tag:blogger.com,1999:blog-65164838289631965502024-03-13T09:05:57.282-04:00Mantle Cell Lymphoma Journey with Joe and BonnieI am creating this blog to follow Joe's journey through the Mantle Cell Lymphoma maze of treatment.Bonnie Evanshttp://www.blogger.com/profile/09493718799661073722noreply@blogger.comBlogger119125tag:blogger.com,1999:blog-6516483828963196550.post-89654573774550325442011-12-28T17:27:00.002-05:002011-12-28T17:46:04.574-05:0012/28/12 As time goes byToday my dear friend, Cyndy, lost her loving and loved partner, Sam <span class="blsp-spelling-error" id="SPELLING_ERROR_0">Morreale</span>. Cyndy, Sam and I never met in person yet we are as close as one could not imagine. When I look into a mirror, I can see Cyndy giving her heart and soul to the care of Sam. It is a miracle that Sam stayed alive this past year and I am sure he did it because of his love of Cyndy. As he saw Cyndy give every fiber of her body and mind fighting to keep him alive, he knew that he needed to keep fighting and keep hope alive that a cure could happen as we all do with these diseases we all fight. Sam was an accomplished artist and his creativeness oozed into everything he touched.<br /><br />Whenever a life is ended from a <span class="blsp-spelling-error" id="SPELLING_ERROR_1">Myeloproliferative</span> Neoplasm which by the way, is considered a slow leukemia, I mourn the lost as if it were a loved one in my family. Cyndy is me and I am Cyndy. Her experience with Sam will be my experience with Joe. I feel what she does. She feels what I feel. I am sure that may make no sense to many people but it is really true. How God put us together is a gift I cherish! Cyndy and I will share future adventures together and share our zest for life. She shared the last year of Sam's life with hundred's of people who learned how to live the final journey of someone you love. It is a sad day today and lots of tears were shed since I feel Cyndy's lost and her ache as well as her future loneliness.<br /><br />Our Lord God, grant Sam your eternal grace and love. Thank you Lord for letting us know Sam and Cyndy.<br /><br />Good-bye Sam!Bonnie Evanshttp://www.blogger.com/profile/09493718799661073722noreply@blogger.com1tag:blogger.com,1999:blog-6516483828963196550.post-55877504091924316702011-12-25T19:15:00.001-05:002011-12-25T19:16:51.244-05:00Coping with New Reality 12/25/2011Hi All!<br /><br />It has been awhile since I did an update. For the last couple months I have suffered from <span class="blsp-spelling-corrected" id="SPELLING_ERROR_0">Caregivers</span> fatigue I had decided not to write anything since I felt so down most of the time. As hard as I tried to get to a regular positive state of mind. I could not hold onto it for any substantial amount of time.<br /><br />Joe is still in remission from Mantle Cell Lymphoma as of days of tests at MD Anderson Cancer Center at the beginning of December. Dr. <span class="blsp-spelling-error" id="SPELLING_ERROR_1">Romaguera</span> is pleased with Joe's blood counts but still wants him to continue infusions of <span class="blsp-spelling-error" id="SPELLING_ERROR_2">IVIG</span> on a 4 to 6 week schedule thus his next one will be the first week of January. Dr. <span class="blsp-spelling-error" id="SPELLING_ERROR_3">Verstosvek</span> is also satisfied with Joe's blood counts on the basis of his <span class="blsp-spelling-error" id="SPELLING_ERROR_4">Myelofibrosis</span>. Personally I have a concern that his counts are on a slow curve downhill but the doctors says he is OK. Joe continues to have to have <span class="blsp-spelling-error" id="SPELLING_ERROR_5">Mohs</span> surgery for regular pop ups on his face for squamous and basal cell cancer, His last one on the upper part of his ear has taken over two weeks to heal and still he giving him pain.<br /><br />The most troublesome of Joe's issues is his mental and reasoning capacity. His personality is hard to deal with since he has no interest in much of anything. His lack of communication to me is difficult since I have to analyze his body language and the tone of his voice to determine how is really is. Too many days he wakes up grumpy and any time something will really set him off. I am worn out dealing with the downer personality and constantly trying to figure out how to boost his mood. I miss the intimacy that has been gone for while and it dwells on me more and more.<br /><br />Yes, I am taking an antidepressant and Joe refuses to acknowledge he is depressed. Once again on a visit to my son's home, he was grumpy and did not participate in conversation. He comes across as he can't get out of there fast enough and it has happened too much in the last year. My granddaughters and son bring me joy but Joe makes it stressful. He is draining me of my self esteem and happiness. Yes, I have discussed this with him but he is not responsive which makes the situation even worse. It is depressing being around him.<br /><br />My support list encouraged me to write on my blog again since it is a method to get my frustration and stress lessen since it worked during the battle with his Mantle Cell Lymphoma.<br /><br />I planned some incredible dream trips that were dreams of his or the both of us. I wondering if I have the energy to deal with his gloomy personality and the lack of desire to do anything but go out to eat. Eating out gives him something to look forward to but it is the only thing and that is the issue.<br /><br />When some very good people tell me what a great life I have and that I should be happy but that makes me even more sadder. Until you walk in another person's shoes, you really do not know what is going on.<br /><br />I am aware of the many blessings that are there but I need emotional support and a connections that is totally lacking. I can not help that way I feel.<br /><br />The day WILL be brighter tomorrow because I will find a way to make it that way. The issue is that I will be knocked down.<br /><br />Where has emotional love gone? Why does it have to be a one way street all the time?<br /><br />Bah Humbug!Bonnie Evanshttp://www.blogger.com/profile/09493718799661073722noreply@blogger.com3tag:blogger.com,1999:blog-6516483828963196550.post-52301403155006867342011-10-04T23:28:00.002-04:002011-10-05T00:26:06.900-04:0010/4/11 Joe is GOOD!Joe's blood counts continue to be in the normal range where his germ fighting antibodies are low. He received his first infusion of <span class="blsp-spelling-error" id="SPELLING_ERROR_0">Immunoglobulin</span> at <span class="blsp-spelling-error" id="SPELLING_ERROR_1">Winship</span> at Emory on Monday that took a half a day for a stupid reason. The Infusion Department never got the doctor orders from Dr <span class="blsp-spelling-error" id="SPELLING_ERROR_2">Winton</span> so we sat around from 7:30 till 9:30 until the orders were received. Naturally I rolled into action trying to figure out the bottleneck. The Infusion RN paged Jessica, the PA, and Sylvia, the RN but got no replies so I decided to take a walk up to the Hematology Department to untangle the bottleneck. The other person I could see that I knew behind the closed doors was the clerk who sets the appointments. I told her that I had a problem at about 8:35AM. She stated that the staff did not arrive till about 9AM. She promised to alert either Jessica or Sylvia or Dr <span class="blsp-spelling-error" id="SPELLING_ERROR_3">Winton</span> when they came in. Jessica came in first and by 9:30 found another doctor to write the order and fax it down to the Infusion Department. Now that I found the break down, I reminded Jessica in a diplomatic manner that a doctor order needs to be faxed to the Infusion department for Joe's next <span class="blsp-spelling-error" id="SPELLING_ERROR_4">Immunoglobulin</span> infusion at the end of October. I must give thanks to my mentor at Bank of America, Leslie <span class="blsp-spelling-error" id="SPELLING_ERROR_5">Kozicki</span>, who taught me the art of diplomacy. I was a slow learner but it finally caught on into my brain.<br /><br />The Infusion of the <span class="blsp-spelling-error" id="SPELLING_ERROR_6">Immunoglobulin</span> was done slowly at first and would build up. It is similar to how the first dose of <span class="blsp-spelling-error" id="SPELLING_ERROR_7">Rituxan</span> was administered at <span class="blsp-spelling-error" id="SPELLING_ERROR_8">MDACC</span>. The reason for that is to assure no adverse reactions. Before the Infusion the RN administered a cocktail of <span class="blsp-spelling-corrected" id="SPELLING_ERROR_9">Tylenol</span> and <span class="blsp-spelling-error" id="SPELLING_ERROR_10">benedryl</span> that put Joe in twilight zone where he dosed away for three hours. While he slept, I drove down the block to get my blood test drawn so it will be ready for my follow up appointment with Dr Shah on Thursday. On the way back to <span class="blsp-spelling-error" id="SPELLING_ERROR_11">Winship</span> I stopped by <span class="blsp-spelling-error" id="SPELLING_ERROR_12">Panera</span> to have a bagel and bring Joe his favorite cinnamon roll which he devoured. I rolled over to the Pharmacy to pick up one of Joe's <span class="blsp-spelling-error" id="SPELLING_ERROR_13">prescrption</span>s for his ongoing cough from the acute sinusitis. He has finished taking <span class="blsp-spelling-error" id="SPELLING_ERROR_14">Avelox</span> for the infection and has been doing the irrigation of his sinuses which makes him feel like he is drowning. He still suffers with it and it is a never ending story that he would like to end that chapter.<br /><br />Joe did not get the boost of feeling better after the <span class="blsp-spelling-error" id="SPELLING_ERROR_15">Immunoglobulin</span> Infusion as some patients mentioned. In fact he felt not as good until this evening which is only a day after the treatment.<br /><br />We are heading to Florida shortly to drop off Max with my son, Mike and our granddaughters. They are going to dog sit for us while we are on a 10 day cruise on the Emerald Princess to the Southern <span class="blsp-spelling-corrected" id="SPELLING_ERROR_16">Caribbean</span>. Joe really wanted to go on a cruise but I did not want to go to the same places we had been before and also not to be too far from the USA. The ship departs from Fort <span class="blsp-spelling-error" id="SPELLING_ERROR_17">Lauderdale</span> and has several days at sea that Joe loves. The new islands we will visit will be Antigua, Barbados, St <span class="blsp-spelling-error" id="SPELLING_ERROR_18">Kitts</span> and St Lucia. I always wanted to go to St <span class="blsp-spelling-error" id="SPELLING_ERROR_19">Kitts</span> and St Lucia so now I will. Through Cruise Critic website there are about 90 of us who have communicated over several months. We booked some private tours together that look like will be mighty fine. The group is from all over the US, Canada and the United Kingdom. Some are seasoned cruisers and some are first timers. The private booked tours cost about 70% of the cruise ship sponsored tours, much smaller groups, one sees more sights, do more adventures, and learn more about the culture of the islands. You make new friends and learn about other places. The group gave me a good tip to park just outside the cruise terminal gates at a Park N Go for half what Princess charges plus they pick you up where you park, load your luggage and drop you off at the front door of the cruise terminal. When you come back, they do the same thing. You go on line and reserve the days you need and you get the $5.99 day fee whereas it is $12 a day with Princess. I love to save some bucks to be used for new experiences.<br /><br />I was able to give blood today at Bank of America Northeast Center location. I used to have issues in years past, where my iron levels were too low. I started taking Iron supplements several years ago and have not had an issue since. I did find out that Kingston, Jamaica had an outbreak of Malaria <span class="blsp-spelling-corrected" id="SPELLING_ERROR_20">several</span> years ago and if you stayed in Kingston, you could not give blood. Joe and I had flown into <span class="blsp-spelling-error" id="SPELLING_ERROR_21">Montego</span> Bay and spent a week on <span class="blsp-spelling-error" id="SPELLING_ERROR_22">Negril</span> Beach where there was no Malaria so I was cleared to give blood. After visiting Southern Africa and Argentina in the past, I had to wait for a certain period where I could give blood again. With Joe getting so much units of blood and platelets when he was getting chemotherapy, I really wanted to make sure that I donate my blood every 8 weeks. I am so thankful for the blood donors who take the time to do this. You really are saving lives. It is easy to do and I was done in 30 minutes! A sight prick on the skin that hardly hurts so do not worry about that part if that has stopped you from giving blood.<br /><br />Joe's weight was 184 yesterday and his blood pressure was super. I scanned the blood reports and attached them to an email to send to Joe's two doctors at <span class="blsp-spelling-error" id="SPELLING_ERROR_23">MDACC</span> in Houston. No surprise that Dr <span class="blsp-spelling-error" id="SPELLING_ERROR_24">Romaguera</span> e-mailed me back in a few hours where he stated Joe's blood counts were good. He wanted Joe to have Emory to get his blood also tested for Lymphoma markers. Dr <span class="blsp-spelling-error" id="SPELLING_ERROR_25">Romaguera</span> is so pro-active in keeping Joe in remission but I do wonder why he wants Joe to have that done whether he saw something that deserved a closer look. Jessica at Emory added the order for Friday to have Joe's blood also tested for Lymphoma markers.<br /><br />Ciao!<br />BonnieBonnie Evanshttp://www.blogger.com/profile/09493718799661073722noreply@blogger.com1tag:blogger.com,1999:blog-6516483828963196550.post-57885428234576815022011-09-19T23:37:00.000-04:002011-09-19T23:38:16.172-04:009/19/11 Blogging AgaIn<span style="font-size: small;">Getting back to blogging is harder than what one would think. I think I was worn out after nine months with helping Joe fighting Mantle Cell Lymphoma then back on the INCYTE (</span><span class="ccbnTtl">Ruxolitinib, RUXO for short in future references) for Myelofibrosis.</span><br />
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<span class="ccbnTtl">Our trip to Jamaica was very laid back at Breezes Grand Negril. The most adventuresome Joe and I got was snorkeling. Joe went once but opted out on other trips since the bottom of his feet hurt when he climbed on the ladder to get back in the boat. We both got a bunch of rest and stayed away from big crowds. We did take a late afternoon excursion to watch the sunset at Rick's Cafe on Seven Mile Beach which is a "must" if you visit Negril. The bar sits on top of the cliffs where one drinks the fancy fruit drinks as one watch the professional local divers just off the cliffs which are about the third of the size of the ones in Acapulco. The tourists who are somewhat brave (drunk) jump off the lower levels probably after a least five fruit concoctions. The tourists show an amazing movement of their hands and legs as they scream on the way down to splash into the cove. After experiencing the All-Inclusive resort, Joe and I decided that cruises were what we like best. It wasn't even close.</span><br />
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<span class="ccbnTtl">Joe's blood results continue to improve and stay pretty much stable with phlebotomies to keep his hematocrit at 45. The phlebes were done at Winship Cancer Institute at Emory University. The nursing staff take good care of Joe. I have noticed that the operation is smoother and faster with the blood draws, labs and getting the phlebes completed at Winship. We are also grateful for the compassionate and good care that Dr Elliott Winton and his Physician Assistant, Jessica Neeley give us. They work closely with MDACC to make sure Joe gets what he needs while we are at home in Atlanta.</span><br />
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<span class="ccbnTtl">On Wednesday, September 14th, Joe and I flew Delta to MDACC in Houston for Joe's first follow-up with Dr Romaguera for Mantle Cell Lymphoma restaging and a routine follow up with Dr Verstosvek in the Leukemia Department for the RUXO trial for Joe's Myelofibrosis. It is a challenge dealing with two incurable blood disease and trying to keep Joe's health care balanced.</span><br />
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<span class="ccbnTtl">Our plane arrived on time at 10:15AM and we picked up our Enterprise Rental Car.They upgraded us to a Jeep Liberty which had only 2000 miles on it. Enterprise is quite efficient in getting checked in. I used Priceline to bid on rental cars. It is quite expensive to rent cars in Houston and one must be diligent in getting the best deal. The best I could do was $48 a day which was not a gold medal bid at all. </span><br />
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<span class="ccbnTtl">Joe's first appointment for blood draws and chest X-Ray was not till 2PM but we got to the Diagnostic Labs early at about Noon. I checked Joe in and surprisingly they saw him within 15 minutes then the X-Ray was done immediately after that. It was great since we were able to meet up with Monica Smith who is a member of the Greater Atlanta MPN Support Group. She moved to Houston at my suggestion to get better care than what she was getting in Atlanta. Monica has Primary Myelofibrosis which she got in her 20's, way too young. She had her spleen removed by Grady Hospital but her follow up care was poor and I knew she needed to see Dr Verstosvek at MDACC. Monica moved to Pasadena, Texas (suburb of Houston) with her wife and her two kids in July. She adores Dr V and he found a trial for her which she just started. She is awed by MDACC, the staff and the facilities. She calls it the Disney World of Hospitals. Joe and I spent about an hour talking to Monica and her wife and catching up on her life and me giving her news on what is going on in Atlanta. We got a photo of all four of us in the Sun Room on the second floor which I will post.</span><br />
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<span class="ccbnTtl">Joe's next stop was to get a CT Scan. There is the prep where Joe must drink two barium milkshakes which takes a few hours. Joe checked in at 4PM and was not done until almost 8PM. It seemed like forever. He hates the stuff the squeeze up into the rear end which is very uncomfortable and the after effects are undesirable.</span><br />
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<span class="ccbnTtl">We were to meet our Chinese friends, Yan and Hang, who are studying for advance degrees in Houston and Atlanta. They are so bright and so lovable. A few years ago we had invited them to Thanksgiving Dinner with our family to learn about American Culture. The friendship continues to blossom. We were suppose to meet them at Cleburne's Cafeteria but by the time Joe was finished, it was too late so Yan suggested the Olive Garden on Old Spanish Trail. Finding the restaurant at night and using Google Maps on my iPhone was a total failure. Somehow we missed the road and I kept following Google Maps. Driving and reading Google Maps at night is fruitless. Joe was no help at all. I could tell he did not feel well and was getting tired. It was very frustrating. Yan called on the iPhone and we decided to meet at Joe's Crab Shack that I had passed several times as I drive around in circles. I think it was about 9PM when we all met and enjoyed each others company. </span><br />
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<span class="ccbnTtl">About 10:30 PM we started to drive to the Crown Plaza on Kirby. We passed one Crown Plaza near the stadium but I told Joe we were staying at the one at Greenwood Plaza where we had stayed twice before. Alas, as I checked in, they had no reservation for us. What? My confirmation was in the car up on the fourth deck of the parking garage. Joe was taking a comfort break in the Men's Room. I remembered that the confirmation was in my email so I trekked back to the front desk and showed the clerk the confirmation. Sure enough, the reservation was at the Crowne Plaza alson in Kirby Drive but the other end and it was near Joe's Crab Shack. I apologized profusely to Joe over and over again since I knew he was tired and feeling sick from the barium junk.</span><br />
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<span class="ccbnTtl">We checked in and the room was so far away from the lobby but the room was clear, nicely decorated but it still had an old TV. You would think that the Crowne Plaza would have flat screen TV's but it really did not matter. I had used Priceline to bid on a four star hotel for $50 a night and I won the bid with the Crowne Plaza being the hotel that accepted it. I let Joe into the room to get himself comfortable as I parked the car. Since the place was filled with guests, I had to park towards the back side. The only way to get back into the hotel was through the lobby since it was so late. I got back to the room and Joe was laid back into the easy chair watching the news. I decided I had to have my Diet Coke and walked down the third floor, to the second floor, first floor and heck there was no vending machine. Down to the front desk I went where I asked where the heck are the vending machines? There was only one (four buildings in the hotel) and it was totally in an out of the way place near the conference rooms, down two corridors behind the lobby. Of course the vending machine was out of Diet Cokes but there were some Coke Zeroes. I had to laugh since I was exhausted with all the Abbott and Costello mess ups.</span><br />
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<span class="ccbnTtl">Thursday we had the doctor consultations. Our first one was with Dr. Romaguera in the Lymphoma Department. We were immediately greeted by Goley Richardson to come on back to the exam area. She asked the hundred questions then was followed by the Lymphoma Resident who examined Joe. He measured Joe's spleen from the outside at only 3cm. Wow, the spleen continues to shrink. Dr Romaguera comes in the room with two female physicians from out of the country. Romaguera always greets me with a big bear hug and Joe gets a strong handshake. Romaguera is pleased with Joe's blood results, XRays and CT Scans that showed no evidence of Lymphoma. Good news indeed, He did state that the CT Scan showed the worsening of Joe's sinusitis to the point of being acute, Dr R ordered another blood test to check Joe's IgG (antibodies) levels in spite that his blood tests were good. He stated that the results probably would not be known until Monday.</span><br />
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<span class="ccbnTtl">Our next stop was the Leukemia Department for a follow up with Dr Verstovsek for the RUXO trial for the Myelofibrosis. Dr V was his usual sweet suave self, He is hoping that we would attend the New York Symposium on November 2 but we have not made a final decision on that trip. Dr V was very pleased with Joe's success on the RUXO and that he would see Joe for another follow up in December the same time Romaguera will see Joe.</span><br />
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<span class="ccbnTtl">We were done with our visits at MDACC and the rest of the day and evening was free. We would fly home on Friday around lunchtime.</span><br />
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<span class="ccbnTtl">We arrived in our home about 5:30PM and I checked my emails, There was a message from Dr Romaguera that Joe's Immunoglobulin levels were low. He wanted Joe to see an ENT specialist and get a culture of the secretions in his sinuses. He also recommended that Joe get infusions of Immunoglobulins once a month.</span><br />
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<span class="ccbnTtl">I fired off a detailed email to Dr Winton and Jessica Neeley expecting to hear from them on Monday sometime. On Saturday afternoon Dr Winton returns my email that he will set up infusions for the following week and work on getting Joe and ENT consultation. Amazing Saturday night I get a copy of an email from the Nurse Practitioner in the ENT department that Joe can see Dr Zara Patel at Emory Midtown at 9AM Monday! A little over an hour later, I get an email from Dr Patel acknowledging that she will see us Monday and if Joe needed anything over the weekend to contact her. WOW!</span><br />
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<span class="ccbnTtl">We saw Dr Patel this morning at Emory Midtown. She was a young, attractive, personable and confident physician. She examined Joe's sinuses with a scope that I was also able to view on a TV screen. I could see the secretions and that his right sinuses were more inflamed than the left and the doctor was able to get some secretions to be examined in the lab. She instructed Joe to irrigate his sinuses twice a day with a saline solution which will take a bunch of prodding from me to get Joe to do it. She also prescribed AVELOX as an antibiotic. The results from the lab will probably be available in three days.</span><br />
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<span class="ccbnTtl">When we got home, I sent the scanned medical test results to Jessica Neeley at Winship Cancer Center. She had instructed the appointment clerk to set up the office visits and tests Joe needs. I replied and asked about the immunoglobulin infusions. She stated that they were not successful in getting that set up. Dr Winton needs to certify him and I am betting that Joe will need Winship to do the same tests. It may not be till next week till we can see Winton and get the infusions. Procedures and protocol needs to be followed. I find it frustrating since I want it done quickly but it is what it is.</span><br />
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<span class="ccbnTtl">You can stop reading now since I am going to post the results of the tests that were done at MDACC. I know some people are interested in the facts so that is why I am posting them. I may be able to attach a copy of the full blood tests since I was able to scan them and save them as a pd file. </span><br />
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<span class="ccbnTtl">Chest PA and Lateral X-Ray 9/14/11</span><br />
<span class="ccbnTtl"> Comparison made with the prior exam of 6/8/2011</span><br />
<span class="ccbnTtl">The lungs remain clear bilaterally, Minimal subsegmental atelectasis noted in the right base, unchanged. The lungs remain otherwise unremarlable. No new focal abnormality.</span><br />
<span class="ccbnTtl">No evidence of metasttases or acute infiltrates. Unchanged,</span><br />
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<span class="ccbnTtl">CT Abdomen and Pelvis 9/14/2011</span><br />
<span class="ccbnTtl">Retaging workup.</span><br />
<span class="ccbnTtl">CT of abdomen and pelvis with intravenous, oral and rectal contrast. Comparison is made with the prior exams including the most recent exam on 6/8/2011.</span><br />
<span class="ccbnTtl">A few hepatic cysts, unchanged. The liver is upper normal in size with no gross change from the previous multiple exams. There is a moderate-to-severe splenomegaly with moderately distended portal vein. The position of the spleen has changed between between the most recent exam and the current one. Although the largest cross sectional dimensions are about the same, measuring 19x11 cm as opposed to 20x10 cm previously on the exam of 6/2011, the volume of the spleen appears smaller.</span><br />
<span class="ccbnTtl">The rest of the intraabdominal solid organs remain otherwise unremarkable. No hydronephrosis. There are small cysts in the kidneys.</span><br />
<span class="ccbnTtl">There is no definite lymphadenapathy or peritoneal disease in either abdomen or pelvis. Minimal periportal nodes are unspecific.</span><br />
<span class="ccbnTtl">Impression: Persistent splenomegaly and portal hypertension possibly some decrease in overall volume, if any change. No new focal adnormality or lymphadenopathy.</span><br />
<span class="ccbnTtl"><br /></span><br />
<span class="ccbnTtl">CT CHEST: 9/14/2011</span><br />
<span class="ccbnTtl">CT chest with intravenous contrast with comparison made with exam ion 6/8/2011.</span><br />
<span class="ccbnTtl">The focal spiculated, most likely scar in the right apex has been stable over multiple previous exams. Minimal subsegmental atelectasis at the bases have been stable. The lung parenchyma remains otherwise unremarkable. No new focal abnormality.</span><br />
<span class="ccbnTtl">Free of lymphadenopathy. Visualized soft tissue, including the axilla, show no evidence of new focal abnormality or metastasis. The small calcified mediastinal nodes are most likely treated disease or previous granulomatous diesase.</span><br />
<span class="ccbnTtl">Impression: No evidence of metastases and recurrence.</span><br />
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<span class="ccbnTtl">CT SOFT TISSUE NECK WITH CONTRAST 9/14/2011</span><br />
<span class="ccbnTtl">Compared CT neck 8/6/11</span><br />
<span class="ccbnTtl">Findings: There is no nasopharyngeal or tonsillar enlargement. There are no enlarged lymph nodes withing the neck or supraclavicular fossae. There is a coarse calcificatio noted within the left anterior thyroid gland which appears stable since the prior study, to be followed. Again demonstrated is a dural-based calcified lesion along the right posterior fossa likely repesenting a meningioma which is stable in size. There is an increae in size of air-fluid levels within the maxillary sinuses bilaterally. There is new diffuse opacification of the sphenoid sinuses and ethmoid air cells as well as the frontal sinuses. The findings are consistent with acute sinusitis.</span><br />
<span class="ccbnTtl">IMPRESSION: No enlarged lymph nodes within the neck. </span><br />
<span class="ccbnTtl">Marked progression of sinusitis, consistent with an acute pansinusitis. There are no CT findings to suggest fungal sinusitis.</span><br />
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<span class="ccbnTtl">IMMUNOGLOBULIN Accession 9/15/2011</span><br />
<span class="ccbnTtl">IMMUNOGLOBULIN IgG 240L MG/DL (700-1600)</span><br />
<span class="ccbnTtl">IMMUNOGLOBULIN IgA 10L MG/DL (70-400)</span><br />
<span class="ccbnTtl">IMMUNOGLOBULIN IgM 31L MG/DL (400-230) </span><br />
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<span class="ccbnTtl"><br /></span>Bonnie Evanshttp://www.blogger.com/profile/09493718799661073722noreply@blogger.com1tag:blogger.com,1999:blog-6516483828963196550.post-82870976726971552362011-08-08T17:27:00.003-04:002011-08-08T18:04:39.132-04:008/8/11 GOAL REACHEDThe past month has been concentrated on getting Joe's <span class="blsp-spelling-error" id="SPELLING_ERROR_0">hematocrit</span> to a safe level. When Joe hah a routine visit with Dr. <span class="blsp-spelling-error" id="SPELLING_ERROR_1">Winton</span> at <span class="blsp-spelling-error" id="SPELLING_ERROR_2">Winship</span> at Emory on July 25, Joe's <span class="blsp-spelling-error" id="SPELLING_ERROR_3">hematocrit</span> was at 54.7 which is considered high. Dr. <span class="blsp-spelling-error" id="SPELLING_ERROR_4">Winton</span> ordered a phlebotomy at the Infusion Lab. What a change from when Joe was having chemo when his counts were low and needed to have red and platelet transfusions. It seems like the <span class="blsp-spelling-error" id="SPELLING_ERROR_5">HyperCVAD</span> has jumped started Joe's bone marrow where it is producing blood again. The trial drug, <span class="blsp-spelling-error" id="SPELLING_ERROR_6">Ruxolitimib</span> (<span class="blsp-spelling-error" id="SPELLING_ERROR_7">INCYTE</span>), for his <span class="blsp-spelling-error" id="SPELLING_ERROR_8">Myelofibrosis</span> usually suppresses the blood counts which has been in Joe's history when he took it before he was diagnosed with Mantle Cell Lymphoma. Joe had a total of two <span class="blsp-spelling-error" id="SPELLING_ERROR_9">phlebotomies</span> before the <span class="blsp-spelling-error" id="SPELLING_ERROR_10">hematocrit</span> got to below 45. The danger of having a high <span class="blsp-spelling-error" id="SPELLING_ERROR_11">hematocrit</span> level is the high risk of a stroke or a heart attack. Since July 31, Joe's was out of danger.
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<br />During Joe's last physician visit to <span class="blsp-spelling-error" id="SPELLING_ERROR_12">Winship</span> at Emory, the medical staff had measured Joe' spleen at only 4cm, nearly NORMAL. When Joe turns sideways, he no longer looks pregnant. He is eating normal now and is slowly gaining weight. His stamina is better and Joe states that he feels good. His hair is now more than a fuzz and has some color to it.
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<br />Joe had a visit with his dematologist and had three squamous growths that had to be remove. Dr. Braza did the one of the top of his forehead and a rather large one on the inside of his right arm. I had grabbed Joe in that area and felt the area which seemed like scar tissue so I had Dr. Braza take a look at it. Sure enough, Joe had a chunk of tissue removed from those areas. The one of the side of his forehead above the left eye will have to have the more delicate Mohr's surgery which will be done on the 23rd of August. The stitches were removed today and Dr Braza says the salt water will enhance the healing and to remember to use sun block of at least 30+. I purchased plenty for the both of us as well as Repel for those pesky mosquitoes.
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<br />We were ecstatic today when we got the blood tests results. They showed all his basic blood counts in the normal range. To say that we are thankful is so shallow sounding. We rejoice that God has given Joe a great chance of being able to live longer and enjoy life. The power of prayer and faith is so strong.
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<br />Here are today's blood results:
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<br />White Blood Count...(4-11) actual 4.5 NORMAL
<br />Red Blood Count.......(4.5-6) actual 5.03 NORMAL
<br />Hemoglobin...............(14-18) actual 14.8 NORMAL
<br /><span class="blsp-spelling-error" id="SPELLING_ERROR_13">Hematocrit</span>................(40-54) actual 47.3 NORMAL
<br />Platelets.....................(140-440) actual 255 NORMAL
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<br />Astounding, isn't it?
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<br />Joe and I will be celebrating at Breezes <span class="blsp-spelling-error" id="SPELLING_ERROR_14">Negril</span> Resort in Jamaica for a week. It is an all-inclusive resort which I thought would be a good idea for Joe's first trip outside the country. There will be no running around doing tours or finding local restaurants. The resort is about an hour and a half from <span class="blsp-spelling-error" id="SPELLING_ERROR_15">Montego</span> Bay Airport on the west cost of Jamaica. Tropical Storm Emily is gone and hopefully no hurricanes will come around while we are there. We have been comparing the Atlanta weather to <span class="blsp-spelling-error" id="SPELLING_ERROR_16">Negril</span> Beach, Jamaica and it is about 4 degrees cooler there. The nice part is that there is the Caribbean breeze of 10 to 16 mph. Bring me my <span class="blsp-spelling-error" id="SPELLING_ERROR_17">Pina</span> <span class="blsp-spelling-error" id="SPELLING_ERROR_18">Colada</span> with the pink umbrella to my beach chair. I will be blogging when I have a chance and if I get motivated.
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<br /><span class="blsp-spelling-error" id="SPELLING_ERROR_19">Bon</span> Voyage my blog readers!
<br />Bonnie Evanshttp://www.blogger.com/profile/09493718799661073722noreply@blogger.com2tag:blogger.com,1999:blog-6516483828963196550.post-86528426804614751162011-07-17T15:21:00.006-04:002011-07-23T01:43:55.415-04:007/17/11 How is Joe?Shame on me for not keeping the blog updated. The reason is I lacked the energy to write it. When I start, I keep going like the energizer bunny. The bunny runs out of juice because she relives the same path over again. Much has happened since I last wrote so the next paragraph<br /><br />Dr <span class="blsp-spelling-error" id="SPELLING_ERROR_0">Winton</span> at Emory advised us that he thought it was a good idea for Joe to get back on <span class="blsp-spelling-error" id="SPELLING_ERROR_1">INCYTE</span> if allowed. Joe's last blood test at Emory still showed elevated White Blood Count at 16 whereas normal is between 4 and 11. It is not too bad for someone with <span class="blsp-spelling-error" id="SPELLING_ERROR_2">Myelofibrosis</span> but the worry was that the white cells would start to increase incrementally once again. The platelet account was a low 79 where normal runs between 140 and 440. The low count was not critical for one with <span class="blsp-spelling-error" id="SPELLING_ERROR_3">myelofibrosis</span> but must be watched for lower counts and excessive bleeding. The results of the stool sample thankfully showed no bad infection which seems to confirm my "doctoring" that the cause for the <span class="blsp-spelling-error" id="SPELLING_ERROR_4">diarrehha</span> was the antibiotics. Dr. <span class="blsp-spelling-error" id="SPELLING_ERROR_5">Winton</span> told Joe that he did terrific on the chemo and congratulated him on his remission. Joe did as good as could be expected. It was a great confirmation and relief to Joe and me to hear Dr <span class="blsp-spelling-error" id="SPELLING_ERROR_6">Winton</span> state it.<br /><br />On Saturday night, July 3, we drove up to <span class="blsp-spelling-error" id="SPELLING_ERROR_7">Alpharetta</span> to have dinner with Joe's sister, Donna, and her husband, Rick, at <span class="blsp-spelling-error" id="SPELLING_ERROR_8">Pappadreaux</span> off of <span class="blsp-spelling-error" id="SPELLING_ERROR_9">Mansell</span> Road. There was hardly anyone in the restaurant which was a real surprise since we always had to endure a long wait. Perhaps it was slow cause it was July 4<span class="blsp-spelling-error" id="SPELLING_ERROR_10">th</span> weekend. We enjoyed a drink before dinner. It seemed like a long wait to get our order and finally a server bought all the dishes out on one of those large oval trays. The server judgment was off since he put the tray down in an off balanced manner. He served Joe's and my order when Donna yelled out. "Watch Out!" Yep, both their orders ended up on the floor. The guy mumbled something under his breathe but never apologized. Donna and Rick insisted us on eating our dinner while they waited for their meal to be made all over again. Joe and I had the Costa <span class="blsp-spelling-error" id="SPELLING_ERROR_11">Rican</span> <span class="blsp-spelling-error" id="SPELLING_ERROR_12">Tilapia</span> <span class="blsp-spelling-error" id="SPELLING_ERROR_13">Layfayette</span> which was fabulous with grilled <span class="blsp-spelling-error" id="SPELLING_ERROR_14">tilapia</span> topped with fresh tasty lump <span class="blsp-spelling-error" id="SPELLING_ERROR_15">crabmeat</span>, shrimp, tomatoes, capers and basil in <span class="blsp-spelling-error" id="SPELLING_ERROR_16">buerre</span> <span class="blsp-spelling-error" id="SPELLING_ERROR_17">blanc</span> with fresh green beans and a ridiculously tasty spaghetti squash which was hard to believe that it was squash. Thank goodness we ordered the small size since it was enough for a normal human being. It was another thirty minutes before Rick and Donna were served and the management apologized for the mishap. The manager did not charge them for their meals which was a class act.<br /><br />On the previous Thursday Donna had some abnormal cells removed in one of her breasts where the cells showed up on her routine annual mammogram. The growth was too small to even feel. She felts great and her surgeon said he got all of it and sent it to the pathologist. Donna was optimistic that all was fine since about five years ago she had the same thing done and it was non-malignant. She would get the results in about a week or so. (UPDATE) Donna's tissue sample was malignant and in the very early stages. A lumpectomy was performed on Thursday, July 21 which went very well.<br /><br />On July 4<span class="blsp-spelling-error" id="SPELLING_ERROR_18">th</span> evening, Joe and I celebrated by going to the Atlanta Braves game. The temperatures were great for a July evening because of cloud cover. I had purchased Club Level seats so if Joe got uncomfortable he could go inside where it was air-conditioned. The game was great since the Braves won and we got to see the fabulous fireworks after the game. Our seats were at an angle so I had to move to get photos at a better angle. I moved towards my right till I could get a better view. When the fireworks were over, I could not find Joe. I looked over to where I thought we had been seated and did not see him so I went into the interior where there were mobs of people piling out of the stadium. I stood there looking back and forth for Joe's bald head and alas, no Joe. For those who know Joe, know that he has a tendency of going off and no one knows where he is. I tried to call him on the cell phone maybe ten times and there was no answer. I prayed that he had my purse with him where ever he was. I decided to go to the car since I decided that he must be there. Outside the stadium it was raining and Joe had the umbrellas. I called on the phone again still nothing. Finally he called me but I could not hear him and I said I hoped he had my purse and was at the car. Cell phone goes dead. I get to the car in the <span class="blsp-spelling-error" id="SPELLING_ERROR_19">Nalley</span> Lot and Joe is not there. Oh my, where the heck is he! Rain pours down harder making me soaked to the underwear but sweating since I was worried about him. I decided to stay put near the car but pacing back and forth like a tigress. Ten minutes later here comes Joe trotting slowly through the parking lot. He shows me his cell phone and says that it was dead so that is why we could not hear each other. He says he was in our original seats and waited for me since he had no idea where I went. I thought he knew where I went. I apologized to him in that I had forgotten exactly where we had been seated. I drove home after I dried myself off with a towel. Joe remarked how well I had driven home since it was pouring and had to see the road. Sweet of him to say that after I had lost him at the Braves fireworks.<br /><br />Thursday the 7<span class="blsp-spelling-error" id="SPELLING_ERROR_20">th</span> we drove down to Orange Park, Florida to see Mike's family and our beloved granddaughters. Of course Max was with us since he is a great traveling dog and the girls love him too. The drive was enjoyable but we notice that in middle Georgia on Interstate 75 there was a lot of smoke that hindered the view and smelled nasty. The fires in south Georgia in the Okefenokee Swamp were causing the smoke to reach this area.<br /><br />We arrived an hour ahead of schedule so we were able to drop Max off at Mike's home then head over to the Holiday Inn on Wells Road to check it. We were on the 6<span class="blsp-spelling-error" id="SPELLING_ERROR_21">th</span> floor and had a lovely good size room. Joe was able to rest for 30 minutes before we would head to the girl's swim meet at the Argyle Pool. Joe and I were surprise to see so many people there. I mean hundreds. Some smart parents had a tent with chairs to watch the meet. We looked around and could not see the girls, Mike or Jenn anywhere and thought I had the wrong pool. As I was calling Mike, here comes Samantha and Emily running up to us with big hugs and wide smiles. They had grown and Sam was really maturing into a young teenager. Sam had slimmed down and look great in her bathing suit. As we followed the girls to where they were sitting, Emily has Sam look at her head to make sure that Grandma did not leave any of her lipstick on her. There was Jennifer under a tent and in a chair with a friend whose daughter was also part of the meet. She graciously offered us a seat in the double lounge chair next to Jenn. It was raining and the meet was on hold since one of the judges had seen lightning in the distance and had to wait till there was no lightning for 30 minutes before the meet could start. The girls had some of their friends around them and it reminded me how young girls are so silly and giggly. It was a delight to see both girls race and Mike came just before Emily's first race. Wow, Emily really knows how to swim now with backstroke, breaststroke and freestyle. Last year she did not know any of that. No ribbons were won but they had a ball and best their previous run times which is their goal. Winners they are.<br /><br />It was about 8;30 PM when we finally left the well organized swim meet to head over to Gators for dinner. It was so nice to sit down with all four of them for dinner. What a great evening and Joe made it through the whole event without having to leave one time.<br /><br />Friday was our day with the girls since both Mom and Dad had to work. We picked up the girls at 9:30 AM and got a quick bite to eat somewhere but I forgot where. Our mission was to buy some school clothes for the girls. We drove over to Avenues Mall which is across the other side of the St John's River. Sam wanted to do her shopping at Forever21, a clothing department store that I never heard of. To our surprise the place was huge with two levels. We started to collect a wide range of styles, colors of skirts, blouses, jeans and dresses. I found a chair outside the dressing room to have Joe sit as Sam tried on clothes and I would run and get different sizes or find another outfit. After two hours, we were successful with Sam and she got four different outfits that were interchangeable which is loved and was so excited about her finds. Our next stop was to find Emily some clothes at Justice Just For Girls. Again between Emily, Sam and I we grabbed difference outfits for Em to try on. Em did not want me in the dressing room so she could model the outfits for me. Joe was seated comfortably outside the store on one of the benches. After about an hour Em had her new wardrobe and grinned from ear to ear. Fun times with the girls doing some shopping. Lunch was at Steak N Shake. The girls ordered a large M&M Milk Shake which the waitress forgot to get in a timely manner. The girls enjoyed those shakes along with their burgers. In the car Emily states I am tired and I am going to take a nap and asleep she goes. We thought we would all get a good rest at the hotel but Em got her energy back and decided that she loved jumping back and forth on each bed forever. I could tell Joe had enough and needed some rest so I took the girls outside to the pool area. We soaked our legs in the hot tub then I let the girls get in it with all their clothes on since they did not bring their swimsuits with them. They also swam in the big pool for about an hour. When they got upstairs, they took a shower and used everyone of the towels. They got dressed up in one of their new outfits<br /><br />We got back to Jenn's townhouse about 5:45PM and we stayed until 6:30. The girls proudly showed their new outfits to their Mom.<br /><br />Joe and I drove over to Judy Morales home about twenty minutes away to pick up her and her brother, Gilbert up for dinner at <span class="blsp-spelling-error" id="SPELLING_ERROR_22">Beca</span> Di <span class="blsp-spelling-error" id="SPELLING_ERROR_23">Beppo</span>. Judy and Gilbert are some of my classmates who graduated from <span class="blsp-spelling-error" id="SPELLING_ERROR_24">Hauppauge</span> High School in 1963. Judy greeted us with a hug and a <span class="blsp-spelling-error" id="SPELLING_ERROR_25">Puerto</span> <span class="blsp-spelling-error" id="SPELLING_ERROR_26">Rican</span> Rum and Eggnog Concoction. Gilbert came in a few minutes after we arrived. Gilbert did the driving over to the restaurant on the other side of the river located at Avenues Mall exactly where we had been earlier in the day. The restaurant had all kinds of nostalgic photos and artifacts from our era that we enjoyed looking at. Sophia Loren was even more gorgeous than I remembered. Strangely the hostess seated us at the same table where Joe and I ate with the family several years ago. We had a <span class="blsp-spelling-corrected" id="SPELLING_ERROR_27">Caesar</span> salad, calamari, lobster ravioli and lasagna which was shared family style. All the orders were small sizes and way enough for all four of us to share and enjoy. Joe and I always enjoy our time with Judy and Gilbert who are such warm and caring people. Judy wanted us to come back to her home afterwards but at 10:30 PM, I knew that Joe needed to get some rest. It was a long day for him and he held up pretty good.<br /><br />The alarm went off at 6AM since we planned to see my niece, Jaclyn <span class="blsp-spelling-error" id="SPELLING_ERROR_28">Garris</span>, run the Triathlon in South <span class="blsp-spelling-error" id="SPELLING_ERROR_29">Ponte</span> <span class="blsp-spelling-error" id="SPELLING_ERROR_30">Vedra</span> Beach. The Triathlon consisted of a ocean swim, bicycling and running. She has made this a part of her training for the Nation's Triathlon in Washington, DC on 9/11/11. Jaclyn has raised over $10,000 for the Leukemia and Lymphoma Society (www.lls.org) in honor of Joe and her deceased maternal grandfather, William <span class="blsp-spelling-error" id="SPELLING_ERROR_31">DeCaprio</span>. Joe and I wanted to show our support and gratitude to her fantastic efforts. We had gotten to scrumptious ritzy <span class="blsp-spelling-error" id="SPELLING_ERROR_32">Ponte</span> <span class="blsp-spelling-error" id="SPELLING_ERROR_33">Vedra</span> about 8AM which Jaclyn told us to come where we could see her finish the bike part of the race then complete the run. Joe and I stood where the bikers jumped off their bikes and start the run. After seeing so many guys and gals of all ages pass us, I was wondering if I would recognize Jaclyn since so many people looked the same in the racing outfits or maybe she had already finishing the biking. About 15 minutes went by, I heard "Aunt Bonnie!". There was Jaclyn looking like a racing pro getting ready to dismount her bike. She had a huge smile and I got her photo! Joe and I moved over to the Montoya Finish Line where the runners came to take off their timer and give it to the officials at the table. I suppose it was 30 minutes when Jaclyn finished the running part of the race. She was pleased with her time and was able to finish the triathlon for the first time. The first one she competed in, her bike had a flat tire and learned an important lesson which she is now prepared for future races. We treated Jaclyn to a hardy breakfast at Elizabeth's in <span class="blsp-spelling-error" id="SPELLING_ERROR_34">Ponte</span> <span class="blsp-spelling-error" id="SPELLING_ERROR_35">Vedra</span> which was a nice casual restaurant and very popular. We ate outside and enjoyed our time together. We did drive over to her apartment located in Jacksonville Beach so we could meet her puppy, Memphis. Memphis is an adopted schnauzer and poodle mix with high energy and so very friendly. Quick good-byes since we had to be in Orange Park at 11AM.<br /><br />We arrived at North Florida Gymnastics about 11:15AM where Emily was participating in learning gymnastics. Her Daddy Mike was there since Mommy Jennifer and Sam were shopping and decorating the townhouse for Emily's 7<span class="blsp-spelling-error" id="SPELLING_ERROR_36">th</span> birthday party. There was Emily flipping, balancing and jumping in the huge gym with wall to wall gym mats. Emily knew that we were there to watch her do her thing which kids love to have. Just being there meant so much to her and to us. After the event, Joe and I headed to the hotel to get a little rest before the birthday party started at 2:30PM.<br /><br />We arrive at Jennifer's <span class="blsp-spelling-error" id="SPELLING_ERROR_37">townhome</span> which was filled with Emily's six guests and Deanna, one of Jennifer's friends. The house was decorated with balloons and streamers necessary for a party. The girls were already playing with the two video set ups with <span class="blsp-spelling-error" id="SPELLING_ERROR_38">WII</span> on one and 360 on the other. It was an Olympic Video Game Party. The girls had so much fun and were so well behaved. Emily was in heaven having her dear friends at her home all at the same time. She could not have been any happier. Jenn cooked pizza for the guests and some pasta since Em does not like pizza. Cupcakes were the dessert and birthday cake and enjoyed by all. Emily loved all her gifts as well as the three Sony <span class="blsp-spelling-error" id="SPELLING_ERROR_39">DS</span> games we got her. Since Joe and I would not be at Sam's birthday party the following weekend, she got to open her large gift after Emily opened all of hers. The size of Samantha's eyes and the expression on her face was priceless when she got her <span class="blsp-spelling-corrected" id="SPELLING_ERROR_40">birthday</span> wish of a new <span class="blsp-spelling-error" id="SPELLING_ERROR_41">Ibanez</span> Acoustical Guitar, bag, tuner and pick. It was so shiny and sounded perfect for her to take her guitar lessons that her other Grandmother and Grandpa got her for her birthday. Joe left after the gift opening since he had all he could take. I stayed for a few more hours to enjoy watching the kids interact with other kids. Mike, Jenn, Deanna and I played a bowling game on the <span class="blsp-spelling-error" id="SPELLING_ERROR_42">Winbox</span> 360. What fun that was and boy we all paid the price for it with sore muscles the next few days. I got such a kick out of watching the girls play "makeup" in the bathroom which was one of the birthday gifts that Emily adored. There was Em trying to put eye shadow on one of her friends as the others looked on. Em told the girl she needed to put her eyelids down. The girl held her eyelids down with her fingers as Emily tenderly smeared some eyeshadow on her lids. Precious memory for sure for me.<br /><br />Joe came by and picked me up about 10PM to head back to the hotel for a good night's rest. The girls had all their sleeping bags all over the living room floor and were all set to watch movies. It was a good time to leave.<br /><br />On Sunday we drove over to Jenn's to say our goodbyes and I love yous. Joe and I were so thankful to be able to be there for the weekend. We enjoyed it so much. We were back on the road after picking up Max at Mike's home at 12:30PM and we got home about 6:30PM. I was starting not to feel so good in the tummy like it was filled too much. At 8PM we went over to Outback for dinner and I did not feel like eating and I started to have to go the restroom often but I still had control. By the time I got home, I had to run to the bathroom way too often. I took tums to settle my stomach that was churning and some <span class="blsp-spelling-error" id="SPELLING_ERROR_43">immodium</span> to stop the <span class="blsp-spelling-error" id="SPELLING_ERROR_44">runs</span> . I could not sleep cause of my issues. At about 2AM I tried to lay down in bed when I started to have some really awful acid <span class="blsp-spelling-corrected" id="SPELLING_ERROR_45">reflux</span> and my stomach was churning even more. I took some more tums and <span class="blsp-spelling-error" id="SPELLING_ERROR_46">immodium</span> but ugh it did not work. I was on the potty when I started to sweat like <span class="blsp-spelling-corrected" id="SPELLING_ERROR_47">Niagara</span> Falls and getting like I was going to pass out. So, I had to lay on the floor. The worse started to happen when I was started to throw up and come out the other end at the same time. I laid on the floor drenched in sweat until I felt there was no more to give. I got out of my nightwear and washed them in the sink, redressed and fell fast asleep. I slept till 3PM the next day and then took it real slow and kept drinking liquids. I did not want to take a chance on putting any solids in my stomach. It was yogurt and cottage cheese for the next two days before I came back to normal.<br /><br />The bad part was that on Tuesday, we were flying to Houston to see Joe's doctors. I prayed that the virus would only be 24 hours. The bad part was but early Tuesday morning I felt like I had been run over by a truck since every muscle in my body aches and my stomach was still churning a little bit. I started taking Maalox anytime my stomach started rolling which helped that part. Our plane left at 7AM to Houston. The day was filled with appointments. At the airport I picked up our rental car and we were on time for the first appointment at 9:15 which was vital signs and a blood draw. We met with Dr Torres in the Infectious Disease Department who came into the exam room stating that he had good news for us. Joe could stop taking the antibiotics since his infection has cleared up and all tests showed no more pneumonia and his chest no longer was wheezing. I was hoping that with the removal of the antibiotics that Joe's intermittent diarrhea would stop which only time would tell. As requested, Dr Torres paged Dr. <span class="blsp-spelling-error" id="SPELLING_ERROR_48">Romaguera</span> since Tuesday was not his clinic day so he could not meet us over in the Lymphoma department or it would stir up the staff. Tuesday was his meeting and <span class="blsp-spelling-corrected" id="SPELLING_ERROR_49">research</span>/teaching day so he would try to see Joe when he saw Dr. Torres. Dr <span class="blsp-spelling-error" id="SPELLING_ERROR_50">Romaguera</span> came into the room with his usual soft smile and a hug for him and a shake for Joe. He was concerned with Joe's platelet count which was again 79 as it was two weeks ago at Emory. He checked for any swollen lymph nodes and there were none. He checking his spleen which was now down to 13.7 cm. Yeah , it decreased another centimeter. <span class="blsp-spelling-error" id="SPELLING_ERROR_51">Romaguera</span> was satisfied that Joe was still in remission and in good shape and he would see him in September. He also told us that Joe's White Blood Count was down to 4.3 which is in the normal range. Great news since it has been high! Not only that, 55% of the white blood count were the germ fighting <span class="blsp-spelling-error" id="SPELLING_ERROR_52">neutrophils</span>.<br /><br />The most important appointment was with Dr. <span class="blsp-spelling-error" id="SPELLING_ERROR_53">Verstovsek</span> in the Leukemia Department which was not till 3PM. Dr V was Joe's <span class="blsp-spelling-error" id="SPELLING_ERROR_54">Myelofibrosis</span> doctor at M D Anderson Cancer Center before Joe got diagnosed with Mantle Cell Lymphoma. Joe had been part of the <span class="blsp-spelling-error" id="SPELLING_ERROR_55">INCYTE</span> trial drug from 9/12/2008 till September 2011 when he had to come off the <span class="blsp-spelling-error" id="SPELLING_ERROR_56">INCYTE</span> to be able to receive chemotherapy for the new cancer. Joe was so worried at that time this past September about coming off the <span class="blsp-spelling-error" id="SPELLING_ERROR_57">INCYTE</span> since it improved the symptoms of the <span class="blsp-spelling-error" id="SPELLING_ERROR_58">Myelofibrosis</span> such as the drenching night sweats, extreme fatigue, weight loss, muscle lost and lack of stamina. Dr V was not sure if he would be allowed on it. I even spoke to the drug company about it and they would see about it when the time comes. So, when we were out there, we were not sure if Joe would be allowed to go back on the trial drug. Catherine Lewis, Dr V's clinical nurse, had Joe sign a disclosure package which listed some of the ill effects which now listed lymphoma in less than 3% of the patients. Dr V stated that he did not have another patient in the trial that had gotten lymphoma but Dr Teferri had one but he did not know which type of lymphoma. It was good to see the tall, gray headed, good looking smiling doctor. He said that he and the drug company decided that they would treat Joe as if he had been on a hiatus from the INCYTE thus he would start where he had left off with 15 mg of the drug twice a day. He was very confident that it would shrink Joe's spleen even more and tackle his other symptoms such as the hourly dripping sweats on head and his stamina as well as the fatigue. It would also help him gain weight. I asked lots of questions and felt comfortable with the decision to go back on INCYTE. Joe was very happy indeed. Time will tell if it works and there are many people praying that it does including us. Next stop was the 10th floor pharmacy at 4:30. They had told us that it would be an hour before it was ready and we requested a rush since we had to catch a plane at Hobby at 7:20 in the middle of Houston's infamous rush hour traffic. They said they would do there best. I got on my iphone where I found out that the plane was delayed by an hour which for a change was good news for us since we did not have to be under great stress to get to the airport and we would have time to have a leisurely dinner if we get the drug in a decent time. We did and by 5:30 we were heading to the airport and were able to fill the gas tank up with .7 gallons, drop the car off, get through security and to the gate by 6:40PM. All the airport screens showed the plane leaving on time so we had to go to the gate to find out what was happening. The gate was at the end of the concourse of course and the attendant indeed told up that the plane was delayed an hour. Yeah, we headed to the middle of the airport where all the food is and we decided to eat at Pappadeaux since I still needed to eat very carefully. I was dragging myself all day by the time I got to the airport, I felt like I could give no more. Joe would walk way in front of me for a change while I slowly took tiny steps. I felt that I was in slow motion. At Pappadeux I had an outstanding Lobster Bisque that I will remember forever with real chunks and pieces of fresh tasty lobster floating on top and in the bisque with just the perfect amount of spices. I had a bland shrimp cocktail that I barely could finish eating. I could not drink my wine. Joe had some fantastic looking oysters rockafeller, salad and even a dessert. The good news from the day had generated an appetite. Yeah for Joe! We landed in Atlanta at 11:30 PM and Joe drove home at my request. It was so good to be home. It was great to have a day filled of good news. God has answered our many prayers.<br /><br />Joe's blood counts on 7/12/11 were as follows with the normal ranges and actual amount.<br /><br />WBC (4-11) 4.30<br />RBC (4.5-6) 5.50<br />HGB (14-18) 15.70<br />HCT (40-54) 50.70<br />PLT (140-440) 79.0<br />ANC (1.7-8.3) 2.36<br /><br />Oh my, the date is now 7/23 and I just can't get motivated to update the blog.<br /><br />Joe's cough is substantially better. <span style="font-style: italic;"><span style="font-style: italic;"></span></span>It has lasted so such a long time so I hope that it is really going away. Joe's spleen decreased substantially after only six days of taking the INCYTE. One nice aspect of the smaller spleen is that Joe can now lay on his left side while in bed. It means that he can snuggle up to me which I treasure thus helping me to sleep better and feel more loved His appetite is finally back to normal so I hope that he gains some weight to his frail frame. Joe's hair growth is now visible rather than just fuzz. One of Joe's favorite perks is when I shave his face with his electric razor which he finds so relaxing. Yes, I have spoiled him! His stamina is somewhat improved but no where it needs to be.<br /><br />Every two weeks Joe will get a blood test done at Winship at Emory. The final report will be faxed ot e-mailed to Dr. Verstosvek and Dr. Romaguera at M D Anderson who will still be directing his care. Our next blood test is Monday morning, July 25.<br /><br />I have booked in August a seven day Breezes Grand Negril Resort and Spa located on Negril Beach in Jamaica. It is about an hour and twenty minute bus ride from Montego Bay Airport to the resort. It is an All Inclusive resort which I felt was good for Joe since we would not be running away. He is looking forward to it tremendously since it is his desire to be able to travel again. Since he is feeling decent, I thought I better fine something sooner rather than later. At this time it would be hard to book any trip way ahead of time.<br /><br />Ciao!Bonnie Evanshttp://www.blogger.com/profile/09493718799661073722noreply@blogger.com0tag:blogger.com,1999:blog-6516483828963196550.post-4264434430588101222011-06-29T22:54:00.002-04:002011-06-30T00:19:56.937-04:006/29/11 SOME ROUTINEJoe stamina is still weak; He eats so little and he tries to cover it up so that I will not notice what be leaves on his plate. But when he turns around I peek under the napkin and plate. We start the morning with a toasted bagel with light cream cheese at the New York Deli on Five Forks Trickum, Mrs Kim greets us cheerfully every morning. After eating I drive off to Bally's Fitness Center and do one hour and half of water aerobics. I usually am exercising much harder than my peers in the class. You get what you put into it. In the class there are about 30 people, when I do aerobics, Joe drives over to Lilburn Park where that have a nice level track and some other green trails. Joe had started with 2 laps last week when as started out exercise routine. He is now doing 4 laps around the track. We get home about the same time. We rest long enough to stop sweating, at times we have some chores to get done such as bill paying and investments, pick up the limbs off the grown, trim some bushes.<br /><br />About 7pm I walked with Max around our block which is hilly and is about 1.5 miles long, I love walking so I can see what is going on in the neighborhood. AS one passes by walking or driving. each person waves to the other. There is a bunch of yard trimmings next to the road from all the thunderstorms that we had. The county did not pick all of it up. I do not think that they were expecting a big load. On Monday the hairless coyote spotted me at the beginning of Musket Lane. It was sitting in the middle of the street to keep his eye on me. The coyote has lost its hair with a bad case of mange, It sure looks quite weird looking. Coyote followed me down Musket Lane to Musket Court then he got lost in the bushes. He is alone and looks sad without his crew.<br /><br />I used Joe's electric shaver to shave his face, chin, neck and ears. Joe is in heaven when I shave him since he finds it so relaxing. It is an act of love of course. Joe's cough is so much better right now but he has a nasty diarreha which occurs about 6 hours after he takes his morning pills; One night when I could not sleep I read the issues on the drugs. It is my opinion that the diarrhea is a reaction to Azithromycin which is one of the two antibiotics he takes for the mycobacterium gordonae. Joe body temperature is so messed up. One minute he is sweating profusely then another minute later he needs a blanket or a jacket to get rid of the cold. His appetite is very fair.<br /><br />I had to do some straightening out of the future schedule for Joe medical appointments to get them changed for when we will be in Houston. I also had to reschedule several other appointments that were on days that we were no going to be there. I would send a secure email on mymdandrerson but nothing got corrected so I had to get more involved with calls and follow up to make sure that it is done. It can be a real challenge and Joe is glad that I handle it all. He just does not have a clear organized mind to get it done correctly.<br /><br />Today I had sent an email to Dr Romaguera about Joe's peersistent explosive watery diarreha that happends in mid afternoon. I also told him about Joe's excessive sweats and extreme temperature, and fair appetite. He wanted Joe to see Dr Torres in the Infectious Disease Department but that would not be for 2 weeks which was too long a period of time .I set up an appointment with Dr Winton at Emory for tomorrow. I forward DR Romaguera's email which stated what he would do and why. So we go to Emory Joe will have his stool tested as well as additional blood tests to make sure Joe does not have another infection. I also told Dr Romaguera that I could not get an appointment for Joe to see Dr Torres in Infectious Disease until September. Romaguera would fix that and he did. I have got to get Catherine Lewis, Dr V's nurse to put his appointment on the schedule for 7/12 since we will be there only that one day. I have been trying to get it on the schedule for a week and it is still not there. I was succeccful in getting DR Schiffman's appointment moved to September when we will be there for a few days.<br /><br />United Health Care finally paid the Home Care that I had to give Joe drugs via IV and even mix the crazy stuff. United kept rejecting the claim and I was getting worried since the price was up to $65000. I had called Applied Health Care about the bill and they told me not to worry about it. It was approved. They go through this with United Health Care each time. Phew I am glad that worked out.<br /><br /><br />Joe and I have enjoyed being homebodies so much that we hardly venture out of our little community. On July 20 I started exercising quite seriously with on Monday, Wednesday anda Friday I do an hour and a half of water aerobics at Bally's Gym. At night I walk 1.5 miles around our hilly neighborhood. On Tuesday and Thursdays I go back to Bally's Gym and ride a recumbent bike 13 miles then do 12 sets of 10 movements on the various weight machines. Every night I do the walk around the neighborhood where I take Max with me since Max also has weight to lose. Max gained 6 pounds since last March.<br /><br />Early this morning we took Max to Banfield Animal Hospital to get his shots updated and that want very smoothy and efficient for a change. We need to get Max groomed on Friday so that is why his shots had to be updated. I think I caught Poison Ivy from Max on the inside of my left arm. What an itch! I asked the pharmacist at Walgreens for help. She helped find me the right ointment gel to use and to take Benedryl also.<br /><br />Tomorrow we have to be at Emory at 8:30 AM for Joe's blood tests. then a stool test, followed by an appointment with DR Winton and Jessica Neely. I had to take a sleeping pill tonight since I only got two hours sleep last night. I also had a glorious two hour massage at Massage Envy today with Hannah.<br /><br />I had spoken to Hollie Baker who had a Allo Stem Cell Transplant and she is finally out of the hospital and in an apartment 5 minutes from MDACC. She said there are 13 pages of side effects from a Stem Cell Transplant and she got every single side effect. She lost 40 pounds during the transplant process and her appetite is still poor. She sounded great on the phone and is so grateful for her husband, Johnnie. She is now allowed visitors so that makes Hollie a happy woman.<br /><br />Good night since I am really tired tonight.<br />BonnieBonnie Evanshttp://www.blogger.com/profile/09493718799661073722noreply@blogger.com1tag:blogger.com,1999:blog-6516483828963196550.post-11723148891587847882011-06-23T21:51:00.004-04:002011-06-24T00:17:13.173-04:006/23/11 Bonnie, where have you guys been?Home, so sweet, Home! We got home on Sunday, June 12. It has taken this long for me to get the energy to write on the blog. The emotional roller coaster broke me down and I had to be rebuilt with new battery. Driving into our neighborhood with the large trees and homesites was emotional for the both of us. All we both wanted to do was nothing! Our desire was to be homebodies for as long as we needed. We unpacked the car and our luggage stayed unpacked for nearly a week. We valued watching TV in our home and on our couch. I had forgotten how great HDTV and a large screen was like. Heavenly, but after a week of do nothing, our batteries were recharged and started doing little things around the house and yard that needed doing.<br /><br />Let me go back to that last jammed packed appointment week at <span class="blsp-spelling-error" id="SPELLING_ERROR_0">MDACC</span>. It took quite a toll on Joe. I had to intervene a few times as the bad guy to get things rolling or tell whoever that we were waiting too long and we would come back when we could. Joe had more eye exams, <span class="blsp-spelling-error" id="SPELLING_ERROR_1">XRays</span>, CT Scans, PET Scans, Bone Marrow Biopsy and other stuff that I have forgotten. There was appointments with <span class="blsp-spelling-error" id="SPELLING_ERROR_2">opthamologist</span>, neurologists, radiologist, infectious disease, <span class="blsp-spelling-error" id="SPELLING_ERROR_3">pulmingologist</span> and lymphoma department. Appointment times were basically "suggestions" where the patient must show up at that time but God only knows how many hours it would take to be seen. The last day we started with neurology at 8:15AM and waited in the small windowless sterile exam room for two hours. We were already late for the next appointment. I walked out of the room looked all over the hallway and there was no one in sight. I walked out to the hallway to make a call to Patient Advocacy to tell them the waiting is ridiculous. They put me on HOLD what seemed forever......I looked through the little window opening when I saw the doctor walking quickly down the hall then poked into Joe's room. I had no smile when I walked in and Joe had no smile either. The doctor stated that the hospital has him running ragged and stretched too thin and he did not make enough money for all he had to do. I know. I could not believe he said that either. Stress gets to all of us. He stated that this would be short that Joe should stay on the <span class="blsp-spelling-error" id="SPELLING_ERROR_4">Keppra</span> for seizures and gave me a 90 day prescription script so I could order it via mail order. He tested Joe's various reflexes and we were gone in probably 5 minutes. Outrageous, isn't it?<br /><br />Next stop was the crazy <span class="blsp-spelling-error" id="SPELLING_ERROR_5">opthamologist</span> at 10:30. Thankfully there were not many people in the waiting area so I thought this should be easy for us to make the next appointment with <span class="blsp-spelling-error" id="SPELLING_ERROR_6">pulminology</span> at 11AM. Joe got called back at 10:15 and at 11AM he was still back there. I had been told to stay in the waiting room. I called Joe on his cell phone, no answer! I text Joe on his cell phone, no response so I did what Bonnie would have to do. I barged into the exam area and there was Joe sitting in the hallway on a little chair. I said what the heck are you doing there. Waiting for the doc. How long will it be? The nurses heard my voice and said the doc would be with him in a few minutes and that he was next. Few minutes pass. Joe's color was awful and I could tell he was feeling really bad and that he was weak from the lack of food and liquids. I told the nurses that we could no longer wait since he was getting weak and we were already very late for the <span class="blsp-spelling-error" id="SPELLING_ERROR_7">pulminologist</span> appointment. The doctor comes out to see what the noise is all about. She was very condescending with Joe and asked him why he was so angry that she was going as fast as she could with each patient. I told her that we had waited for hours on Monday with her and we could not do that again today. Look at Joe, one can see he is getting weak. We are late for another appointment by an hour. The doc said that he could come back later that day but the nurse was going to have to dilate his eyes. Well, why we had to wait another 15 minutes for that to happen was nuts when we saw nurses running around looking for supplies and seemed disorganized. Eyes are now dilated and I take Joe to the <span class="blsp-spelling-error" id="SPELLING_ERROR_8">pulminologist</span>. The eye staff had called ahead and told them about Joe and that he was a bit miffed about the delays. A nurse saw Joe quickly and pronounced him OK though she was really startled when she saw that his eyes were dilated. We get out of there at about 11:15 and Joe has 20 minute window in which to eat to prep for the PET Exam. We ate in the cafeteria downstairs where we met Alan, Laura <span class="blsp-spelling-error" id="SPELLING_ERROR_9">Caruthers</span> and their son, Sammy, for lunch. Alan is getting ready for a Stem Cell Transplant and getting various tests and exams for it. He had had his spleen removed with complications about two months ago. He looked pretty good. We went back to the eye doctor again. We did not wait very long this time, When she came into the exam room. she says to Joe, Are you feeling any better? He says No but the eternal waiting is very stressful and trying to meet each appointment in a short period of time. After some more examination, she tells Joe that his type of eye defect is not caused by the medication he was taking, She wants him to have a CT scan of his head and orbital area before we left Houston. I told her that it had to be done by the next day since we were leaving to go back home to Atlanta. Would you believe, the appointment was scheduled for 5PM on a Friday?!!!<br /><br />We headed over to Mays Clinic for the PET Scan and they took Joe back and I would not see him for several hours. The Meadors stopped by to say hello while I was waiting and we talked for an hour when Joe came out. Joe was starving so we all decided to go eat at the fabulous Cleburne's Cafeteria on <span class="blsp-spelling-error" id="SPELLING_ERROR_11">Bisonnett</span> Street not far from <span class="blsp-spelling-error" id="SPELLING_ERROR_12">MDACC</span> which has great homemade from scratch food with very generous portions. Randy Meador has had an auto and an allo stem cell transplant. He looks wonderful and has a fabulous attitude. Randy and Angela are such fun people to have dinner with once again.<br /><br />Joe and I were both asleep by 10PM that night since we had to get early again for <span class="blsp-spelling-error" id="SPELLING_ERROR_13">his</span> last round of appointments on Thursday which started with a blood test then a CT Scan then we would get to see Dr <span class="blsp-spelling-error" id="SPELLING_ERROR_14">Oki</span> for the final word on Thursday afternoon. I have forgotten all the places we had to go that day but we did not get to the Lymphoma Department until 4:30PM. There was only a few patients left in the waiting room but we finally saw Dr <span class="blsp-spelling-error" id="SPELLING_ERROR_15">Oki</span> since Dr <span class="blsp-spelling-error" id="SPELLING_ERROR_16">Romaguera</span> was out of town for several big medical conferences. It was a bit anticlimactic. It was <span class="blsp-spelling-error" id="SPELLING_ERROR_17">Oki</span> going over every test result with us where each stated NO LYMPHOMA. Joe was in complete remission and he needed to come back and be <span class="blsp-spelling-error" id="SPELLING_ERROR_18">restaged</span> in three months. When he opened the door, there was our dear <span class="blsp-spelling-error" id="SPELLING_ERROR_19">Goley</span> Richardson, Dr <span class="blsp-spelling-error" id="SPELLING_ERROR_20">Romaguera's</span> RN who is pictured on the top of the blog. I gave her a huge hug and then the tears of relief finally flowed down my cheeks into her hair. She gave Joe a hug also. I gave a hug to Dr <span class="blsp-spelling-error" id="SPELLING_ERROR_21">Oki</span> who finally gave us a big smile, He acknowledged that he knew that we really wanted to hear the news after all these months from Dr <span class="blsp-spelling-error" id="SPELLING_ERROR_22">Romaguera</span>. It was quite an understatement. We left the Lymphoma department with joy and relief. We headed to the Infusion Department to have Joe's <span class="blsp-spelling-error" id="SPELLING_ERROR_23">PICC</span>/<span class="blsp-spelling-error" id="SPELLING_ERROR_24">CVC</span> line removed from his left arm. As we waited, I cried and Joe held me. I could feel his relief also and I was crying for the both of us. I could see the emotion in his eyes and body language. The tech was wonderful who took out the line. It was all real that this nightmare was over with and that we would be going home, really home and that the chemo was done and was successful. The PICC line is equal to a ball and chain so having it removed it like FREEDOM with an exclamation point!!!!!!! Yeah, free at last!<br /><br />We slept very late on Friday and packed up the room so we would be able to leave on Saturday. We had lunch at the Brisket House. We headed over to the Mays CT Out Patient Clinic which the crazy opthamologist ordered and got there on time. Oh my, they took Joe back to the rooms at 5:3<span class="blsp-spelling-error" id="SPELLING_ERROR_25">oPM</span>. I was pacing the floor like crazy what seems like forever and met a daughter from Roswell, GA with her Mom who had cancer in her nose. I met another couple from South Texas. When the man got called back, I told him to check if another patient by the name of Joe was still alive. I think it was about 8:30PM when Joe finally came out. He said the CT can of the head was the hardest one that he had. With his persistent cough, he would have to press a button to stop the machine so he could cough. It was a very long ordeal and the noise of the machine and having to wear a helmet was a bit much. He was finally over all the testing and ready to get away from the Texas Medical Center.<br /><br />Saturday we drove about 7.5 hours before we stopped for the night in <span class="blsp-spelling-error" id="SPELLING_ERROR_26">Biloxi</span>. We had dinner at a Country New Orleans Cajun Restaurant where the locals eat. Thankfully from YELP we ordered only one dinner and shared it and still had enough food left over for another meal for the both of us. The shrimp and oysters were so tender and tasty. It was nice to find a little local place to eat.<br /><br />We got home on Sunday evening just as the <span class="blsp-spelling-error" id="SPELLING_ERROR_27">Bennetts</span> next door were coming home from Chad, their son's, wedding in Columbia. We had hoped to had been able to attend the big joyous event but the timing did not work out.<br /><br />Since we have been home, I have been making better meal choices. The toll of the last 10 months had me gain nearly 40 pounds. I know that it is terrible but the stress of this time was very high and I had to keep Joe eating since he had lost 30 pounds. He was slim to begin with. This past week I started exercising in the morning for an hour at <span class="blsp-spelling-error" id="SPELLING_ERROR_28">Bally's</span> Fitness and walking for a half hour in our hilly neighborhood.<br /><br />I am so proud of Joe's attitude where he accomplishes little tasks around the house. He is walking about a half mile a day and he will get stronger. His appetite is fair but he is eating but I doubt that it is enough for him to gain weight.<br /><br />This pass Sunday it was wonderful being able to attend church service at <span class="blsp-spelling-error" id="SPELLING_ERROR_29">Eastminster</span> Presbyterian Church and see everyone who had prayed and followed Joe's journey. They cheered at his remission and will pray that his remission will last a long time.<br /><br />Joe had a CBC today at Emory. His blood counts improved except his platelets dropped to 118 which is acceptable but below normal. His coloring looks good and he seems upbeat though he still gets tired quickly but at least he accepts it as a situation that will get better with time.<br /><br />Joe still has <span class="blsp-spelling-error" id="SPELLING_ERROR_30">Myelofibrosis</span> per his last Bone Marrow Biopsy. It is graded as <span class="blsp-spelling-error" id="SPELLING_ERROR_31">MF</span>-2 per the European grading standards where <span class="blsp-spelling-error" id="SPELLING_ERROR_32">MF</span>-3 is the worse stage. Dr <span class="blsp-spelling-error" id="SPELLING_ERROR_33">Verstovsek</span> of the Leukemia Department wants to put Joe back on the <span class="blsp-spelling-error" id="SPELLING_ERROR_34">INCYTE</span> trial drug since Joe's Quality of Life was good with it. Joe will fly for an exam with Dr V in mid July at <span class="blsp-spelling-error" id="SPELLING_ERROR_35">MDACC</span>. Next week we will consult with Dr <span class="blsp-spelling-error" id="SPELLING_ERROR_36">Winton</span> of <span class="blsp-spelling-error" id="SPELLING_ERROR_37">Winship</span> Cancer Institute at Emory about the <span class="blsp-spelling-error" id="SPELLING_ERROR_38">Myelofibrosis</span> to get his opinion what Joe should do. Joe's sweats happen more often now and he has itching behind both ears which might be from the <span class="blsp-spelling-error" id="SPELLING_ERROR_39">MF</span>. I bought him some <span class="blsp-spelling-error" id="SPELLING_ERROR_40">Benedryl</span> to see if that relieves the itching since I read that it could help on the <span class="blsp-spelling-error" id="SPELLING_ERROR_41">MPN</span> Support Group on line. One can not take it long term cause of possible liver complications but I want to see if it helps him.<br /><br />The medical community changed the name of <span class="blsp-spelling-error" id="SPELLING_ERROR_42">MPD</span> (the D is for Disorders) and <span class="blsp-spelling-error" id="SPELLING_ERROR_43">MPN</span> (the N is for Neoplasms) so the diseases can get more funding and research by designating it as a type of very slow leukemia. It sounds awful but if it helps find a cure then that would be a real gift to humanity.<br /><br />I want to thank my blog and Facebook readers who donated to my niece, Jaclyn <span class="blsp-spelling-error" id="SPELLING_ERROR_44">Garris</span>, efforts to raise funds for the Leukemia and Lymphoma Society (<span class="blsp-spelling-error" id="SPELLING_ERROR_45">LLS</span>) by participating in the Nation's Triathlon to be held in Washington, DC on September 11. You can still donate and still help the cause. "Soon there will be a cure," as Mary states at the end of every Mantle Cell posting.<br /><br />Faith. Hope and Charity! It is what keeps us going.<br /><br />Blessings and thanks to all,Bonnie Evanshttp://www.blogger.com/profile/09493718799661073722noreply@blogger.com4tag:blogger.com,1999:blog-6516483828963196550.post-27795637971259816012011-06-11T00:16:00.003-04:002011-06-11T00:23:14.334-04:006/9/11 COMPLETE REMISSION! Thanks be to God.After some very stressful busy days at <span class="blsp-spelling-error" id="SPELLING_ERROR_0">MDACC</span> cramming tests and numerous doctor visits, Joe was declared in COMPLETE REMISSION by Doctor <span class="blsp-spelling-error" id="SPELLING_ERROR_1">Oki</span> since Dr. <span class="blsp-spelling-error" id="SPELLING_ERROR_2">Romaguera</span> was out of the country until 6/21. All results showed no Mantle Cell Lymphoma. Praise be to God. We are so thankful that there are not enough words to state how we feel. We are experiencing a complexity of emotions.<br /><br />More on what transpired will come when life slows down a little bit but I know how everyone was anxiously awaiting the news on the blog.<br /><br />We start our trek home on Saturday morning and will be home on Sunday.<br /><br />Stay Tuned. Thank you for your prayers and great thoughts that made us able to reach this goal with our bodies and minds somewhat still intact.<br /><br />CiaoBonnie Evanshttp://www.blogger.com/profile/09493718799661073722noreply@blogger.com8tag:blogger.com,1999:blog-6516483828963196550.post-7666926833484805842011-06-10T12:40:00.000-04:002011-06-10T12:40:06.495-04:00Cancer Journal: Latest cancer research EHA 2011: Remission duration of lymphoma doubled by new therapy | ecancermedicalscience<a href="http://www.ecancermedicalscience.com/news-insider-news.asp?itemId=1821">Cancer Journal: Latest cancer research EHA 2011: Remission duration of lymphoma doubled by new therapy | ecancermedicalscience</a><br /><br />Ciao,BonnieBonnie Evanshttp://www.blogger.com/profile/09493718799661073722noreply@blogger.com0tag:blogger.com,1999:blog-6516483828963196550.post-79193854980220896222011-06-07T22:32:00.001-04:002011-06-07T22:33:21.382-04:006/7/11 IT'S A SMALL WORLD AFTER ALL!<!--[if gte mso 9]><xml> 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Roman"; mso-fareast-theme-font:minor-fareast; mso-hansi-font-family:Calibri; mso-hansi-theme-font:minor-latin; mso-bidi-font-family:"Times New Roman"; mso-bidi-theme-font:minor-bidi;} </style> <![endif]--> <p class="MsoNormal"><b><span style="font-size:14.0pt;line-height:115%; font-family:"Times New Roman","serif";mso-fareast-font-family:"Times New Roman"">Good Day so far! We started at Panera Bread for the usual sesame bagel. I made calls to MDACC to get Leukemia Department scheduler to schedule and order a full CBC with PTT so it will be ready for the Bone Marrow Biopsy (BMB) tomorrow AM. I had read on line late last night for BMB prep that a full blood test with PTT must completed within 48 hours of the test. </span></b><b style="mso-bidi-font-weight: normal"><span style="font-size:14.0pt;line-height:115%;font-family:"Times New Roman","serif"; mso-fareast-font-family:"Times New Roman"">The one Joe had on Monday as only partial blood test and did not have a PTT as well as it would be over 48 hours old. Thank Goodness I caught this since it would have created a mess and a huge delay. <span style="mso-spacerun:yes"> </span>I ran into the grocery store to get Joe some OJ, Congratulation cards for the girls and a USA Today. When we got back to the room at 11:50 AM and I signed on to see if the CBC test was ordered. It was scheduled for 11:30AM. They must have thought that we were at MDACC when I had called earlier so we were already late before we even knew we were late. We hopped back in the car to MDACC and had the test done at the 8th Floor Leukemia Fast Track Lab.<span style="mso-spacerun:yes"> </span>The Fast Track area was all brand new and so much more room than when we were last there in July 2010. They were efficient and quick. Next we headed to lunch at Luigis for a small pizza which was yummy good. Since we were so close to downtown, I drove over to Minute Maid Park and bought two Club level Baseball tickets 4th row, visitor side between third base and home. The Braves are playing the Houston Astros this weekend starting Friday night. Since it should be our last night in Houston, I splurged and got good seats. The Park is enclosed and kept at 72 degrees inside so it should be comfortable for Joe. It is a real treat for the both of us since we are huge Braves fans. Now we have a few hours of rest before we have dinner with some travel friends that we met in Valparaiso, Chile. It should be a delightful evening!</span></b></p> <p class="MsoNormal"><b style="mso-bidi-font-weight:normal"><span style="font-size:14.0pt;line-height:115%;font-family:"Times New Roman","serif"; mso-fareast-font-family:"Times New Roman"">It is now 9PM and we have returned from our fantastic South American dinner with Don and Joanie Haley of Houston, Texas. They picked us up at our hotel. When we came out of the elevator, I recognized Joanie from her back since she was asking for Bonnie Evans but there was no Bonnie Evans at the hotel but there was a Kathleen Evans. I stated that I bet this lady is looking for “Bonnie” Evans but she could not find her at this hotel. Well, here I am. We gave each other a big warm hug and smiles and went to the waiting car. Don drove as we talked away a mile a minute catching us on news. They were amazed that we saw more of the Houston area than most Houstonians and we sure get around! The South American restaurant was called America’s and was decorated with unusual pizzazz and in bright colors. Our waiter, Salvatore, was from Palermo, Italy and did an amazing job waiting on us.<span style="mso-spacerun:yes"> </span>Joe and I ordered steaks churraso and they were perfectly seasoned, hot, tasty and tender. All four of us shared one order of Tres Leche since so many of the reviews raved about it. It was scrumptious. As we were leaving the restaurant Joanie and I had to use the restroom. There were four doors. Three were marked Men and only one was for Women. This restaurant is nuts since it should be the other way around so Joanie went into the door marked Women’s and I went into the door marked Men’s. It was a beautiful well designed restroom. I came out before Joanie and I mentioned in the lobby to Joe that the restaurant had three men room and only one ladies room. The hostess heard me and said that I needed to open the women’s door and that there were eight stalls in there. You could have fooled me. She walked back there with me and opened the door. I thought I was in a Fun House with Mirrors at the Circus. The bathroom was a sight to see and each stall was like one of the Men’s Room. I was laughing pretty hard when Joanie came out of her stall. It was quite a surprise with the decorated black and white mirrors on all four sides and door stalls. I have not seen anything close to that since I was a little guy at the Fun House with all their wiggly mirrors. Upon leaving the restaurant Don and Joanie took us around the old grand part of River Oaks with all the Oil Magnets huge homes and walled lots with impeccable perfect landscapes. I love the Fig Ivy that they grow on the fences and sides of the homes. It is so flat and thick, lovely to look at. The immense old 100 year oaks that adorned the area were God’s gift to Houston. What a wonderful fun evening given to us by the generous Haleys. We have another wonderful memory to share on top of Chile. It is a small world after all!</span></b></p> <p class="MsoNormal"><b style="mso-bidi-font-weight:normal"><span style="font-size:14.0pt;line-height:115%;font-family:"Times New Roman","serif"; mso-fareast-font-family:"Times New Roman""> </span></b></p> <p class="MsoNormal"><b style="mso-bidi-font-weight:normal"><span style="font-size:14.0pt;line-height:115%;font-family:"Times New Roman","serif"; mso-fareast-font-family:"Times New Roman""> </span></b></p> <p class="MsoNormal"><b style="mso-bidi-font-weight:normal"><span style="font-size:14.0pt;line-height:115%;font-family:"Times New Roman","serif"; mso-fareast-font-family:"Times New Roman""> </span></b></p> <p class="MsoNormal" style="mso-margin-top-alt:auto;mso-margin-bottom-alt:auto; line-height:normal;mso-outline-level:6"><b><span style="font-size:14.0pt; font-family:"Times New Roman","serif";mso-fareast-font-family:"Times New Roman""> </span></b></p> <p class="MsoNormal"> </p>Bonnie Evanshttp://www.blogger.com/profile/09493718799661073722noreply@blogger.com2tag:blogger.com,1999:blog-6516483828963196550.post-51465194620935633262011-06-06T16:05:00.005-04:002011-06-06T22:50:06.384-04:006/6/11 BIG "D" WEEKEarly Monday 5/30, which was Memorial Day, Joe had to go to Diagnostic Testing to get his blood test then up to the Sarcoma Clinic for someone to review it. It was a very trying day since the constant waiting was finally getting to me. I felt like screaming but I knew it would not do any good plus there was a roomful of patients also waiting. Joe's platelets had dropped to a very low 6 thus he would need another 6 units of platelet transfusion. We left the Sarcoma Clinic at 9AM and the infusion appointment was not until 11:30 AM. So we had lunch at The Rotary House which was nice and quiet since it was a holiday. We got to the Infusion Department on time but were not called till about 1PM. It seemed like a full day. Once Joe was in a bed, we then had to wait for the platelets to show up. We waited and waited. There was an alarm going Bing, Bing, Bing, Bing every five seconds for about 10 minutes that finally got to me that I went looking for where the alarm was coming from. I located it near a phone where across the table was two nurses. I asked them what was the sound for. It was a patient alarm. I asked how could they stand that sound after 10 minutes of constantly beeping. They just turned away. When I went back to Joe's bed, the alarm finally was answered and stopped. Jeez! I wonder why? NOT! We waiting some more. It was getting to be infuriating. So I opened the curtains of Joe's area and kept it opened. Joe paged the nurse. I said we had been there an hour and 15 minutes on the bed and nothing was happening. Finally the platelets arrived and took about 45 minutes to be infused. He was done for 30 minutes before the RN came back to flush the lines so we could go. Thank God, we had finally left the building.<br /><br />When we got back to the hotel home, we both crashed into bed from exhaustion and stress. We were not going to move so we ordered pizza at 8:30 PM from Barry's Pizza to be delivered.<br /><br />On Tuesday, 5/31 Joe had a full day exam with the Flex Department at <span class="blsp-spelling-error" id="SPELLING_ERROR_0">MDACC</span> on the 7<span class="blsp-spelling-error" id="SPELLING_ERROR_1">th</span> floor with Dr <span class="blsp-spelling-error" id="SPELLING_ERROR_2">Schiffman</span>, an <span class="blsp-spelling-error" id="SPELLING_ERROR_3">Opthamologist</span>. Her office had left me a message that the tests and appointments would last as long as six hours so make plans for a long day. I am glad that they had left that message on my voice mail since I would have been impatient that it was taking so long. Joe had the most thorough eye exam ever and stated so. Not surprisingly there was a lot of waiting in between various tests and exams. It did not start so well when Joe was answering the doctor's questions and she would ask the same one over and over again. We were both starting to think she was a dingbat and she was thinking the same thing of Joe. The nurse had given her the wrong chart thus causing the communication bottleneck. So one can see why it is important that whoever is seeing you should ask you your name and patient number and compare it with the chart or look at the armband. After a three day weekend people get loose so I contribute it to getting back in the work mode.<br /><br />Dr. <span class="blsp-spelling-error" id="SPELLING_ERROR_4">Schiffman</span> did also find a Visual Defect Impairment in both eyes which the Costco Optometrist had found during exam so Joe could get new glasses. She advised us that she found a very tiny tear in his Optic Nerve and that we should not worry about it. She requested us to go back to Costco to get the Visual Defect Impairment grid and bring it back to them. A MRI Scan of the head, neck with optical area would be ordered. I told her that on 6/10 we were planning to leave Houston to head back home to Atlanta and to instruct the scheduler to make the MRI appointment for the following week. She assured me that they would work with the Lymphoma Department to work it in at the same time as one of his other tests.<br /><br />The evening of 5/31 I got a surprise call from my favorite niece, Jaclyn <span class="blsp-spelling-error" id="SPELLING_ERROR_5">Garris</span>. She asked us permission to train and compete in the Nation's Triathlon on 9/11/11 in her Uncle Joe's honor to raise funds for the wonderful Leukemia and Lymphoma Society or www.lls.org who assists in grants for research, provides education and support, as well as financial support to patients. She is in serious training and recently bought herself a racing bike.<br /><br />Please donate to her efforts in honor of Joe. Even a little amount will help so many people. Here is the link to be able to donate.<br /><br />http://pages.teamintraining.org/ncfl/nattri11/jgarris<br /><br />On Wednesday, 6/1, Joe woke up and thought that it would be a great day to go to Galveston Beach and take Max with us. It sounded great to me so I drove down to Galveston from the main seawall to where the ship channel was and saw lines of tanker ships waiting to come in to get filled up with oil from one of the numerous refineries along the Main Land coast of Galveston Bay near Texas City. We had gotten out of the car with Max at the channel where no one was around so Max could be free to roam. I took a few photos and back into the car we went. Joe says to me, " I think we should have lunch on the way back to Houston off of Interstate 45." I had stated that there were some good restaurants located on the Galveston Strand where we could have some great seafood. I drove a few more blocks through the awesome Strand area of Galveston where there are some incredible Victorian Homes where I took from photos from the driver's seat. I am the one who drives everywhere during out time in Texas since I have gotten to know my way around so well. I drive down the Strand and I see some enticing shops that I would love to go into but <span class="blsp-spelling-error" id="SPELLING_ERROR_6">noooooo</span>, Joe says, "I want to go back to Houston now and eat there." I asked him if he were sick and he said no! I did not believe him. I was not a happy wife, caregiver, or person to drive that far to spend a few minutes. This is becoming a habit with Joe where we go someplace and he wants to leave very quickly. Why the heck even go? Before we left for Galveston, I had asked if he was sure he was up to doing the trip since I did not want him to feel that he had to make sure that I kept myself entertained. He stated that he was up to it. I am not going to do this with him again. He did that to me in San Antonio where we spent one night and came back right away. He did it in Dallas when we visited Julie and her family and when home after one night. If I am going to do something, I am going to do it by myself without him. Thank Goodness I went to Victoria by myself.<br /><br />On Thursday, June 2, it was time for another blood test to see if Joe needed any transfusions. His platelets were at 7 so we headed to the 2<span class="blsp-spelling-error" id="SPELLING_ERROR_7">nd</span> floor transfusion department. It was another long day of waiting for all the pieces to fit together. Unfortunately we did not leave until 7:30PM. My endurance for patience is getting less and less perhaps it is because I think that we are getting closer to this being over with so we could head home on 6/10. Since Joe's platelets were so low, the RN said that Joe will be scheduled to come back in on Saturday.<br /><br />I had gotten a text with a photo of my granddaughters from my daughter in law of them in their swimsuits competing in their first swim meet. Emily, the 6 year old, came in second on two races which made happy faces on Joe and me. Samantha, the 12 year old, came in fourth in her races. I appreciate it so much when I get news of the kids achievements since we can not be there. Hopefully Joe and I will be able to see them compete since the races continue to the end of July.<br /><br />On Friday I got two sad pieces of news. One of my first boyfriends from High School when I was in 9<span class="blsp-spelling-error" id="SPELLING_ERROR_8">th</span> grade passed away after losing his fight with cancer. He was one of a kind and my dance partner where we did a wild Twist to Chubby Checker! I also found out that one of my retired peers from Household Finance, Fred Johnson,received news that he had Large Cell Diffuse Lymphoma, a type of Non-<span class="blsp-spelling-error" id="SPELLING_ERROR_9">Hodgins</span> Lymphoma. Joe has the Mantle Cell Lymphoma which is also a type of Non-<span class="blsp-spelling-error" id="SPELLING_ERROR_10">Hodgins</span> Lymphoma. I e-mailed Fred a bunch of links to learn about the disease, treatments and support.<br /><br />I spent most of the day trying to get someone to schedule Joe's blood test for Saturday since it fell through the cracks on Thursday. I finally got word late Friday that Joe was put on the schedule. It can be challenging making all the pieces fall in a line together. If I do not get a response, I keep contacting someone else on the ladder until I do. This time it took me about four tries!<br /><br />Saturday morning, 6/4, we were back at the 2<span class="blsp-spelling-error" id="SPELLING_ERROR_11">nd</span> floor Diagnostic Testing and back up to the Sarcoma Floor to get the results. GREAT NEWS! Joe did not need platelets since it jumped up to 38 from 7 in just two days. Joe and I were smiling ear to ear. We bounced down the hall in a celebrating mood. Yea!<br /><br />We decided to celebrate the day's good news by going to dinner at <span class="blsp-spelling-error" id="SPELLING_ERROR_12">Villagios</span> on San Felipe, not far from out hotel The temperature had hit 100 degrees on Saturday breaking all previous records. We were directed to our favorite table but Joe wanted to eat outside since he was too cold inside. Big Mistake! After about 10 minutes being outside, I started to perspire like a wet towel. I kept wiping my face with my napkin but I never complained. Joe ate his salad and a piece of bread. When the main course came, Joe ate maybe two bites of his Lasagna and said he was not hungry. Again, I asked him if he felt okay and said that he just was not hungry. I proceeded to eat my delicious <span class="blsp-spelling-error" id="SPELLING_ERROR_13">cannelonni</span> with a creamy mushroom sauce that was outstanding. Joe turned to get the waiter to bring the check. I told Joe to stop that since I had only started to eat my meal. He was rushing me which was rude. He fidgeted while I ate my meal faster than I wanted to but I did finish my meal and my glass of wine. As soon as I placed my fork and knife on my plate at am angle, he got up and went into the restaurant to pay the check. As I drove back to the hotel, he said that he made a big mistake in making the decision to eat outside. I went with his decision since I try hard to make sure he is comfortable so he can eat decently and enjoy his meal. Bonnie learns another lesson.<br /><br />Sunday, 6/5, Joe and I attended service at St Philips Presbyterian Church near our hotel. It was World Communion Sunday and we both gave thanks to God that Joe is making progress on being released from the Lymphoma department. We also prayed for so many of our friends fighting cancer or other life's challenges. The list is very long.<br /><br />On Sunday afternoon, I got stir crazy and could not stay another minute in the hotel room watching Golf. If Tiger is not in the race, I am not interested in watching slow moving Golf on TV. I told Joe that I was heading over to Galleria Mall to walk around. He said he would come. I told him that I thought it would be better if he didn't since I did not want to go for only a few minutes then come back. Thankfully, he agreed to stay put and rest. I probably spent two hours walking around the mall. My favorite part was watching from the sidelines the ice skaters on the skating rink where it was cooler and more comfortable. I had a small lunch while sitting there taking it all in and remembering times in my past when I use to love to skate and the time the boys went skating with their grandparents when the <span class="blsp-spelling-error" id="SPELLING_ERROR_14">Omni</span> (now CNN Center) had their ice skating rink.<br /><br />When I got back to the hotel, Joe was happy and in a good mood. I had been researching trips to take that I felt Joe could handle. When I got a travel alert that tickets to Honolulu were only $400 round trip from Atlanta, I made my move. I bought tickets for 1/10/12 and return to Atlanta on 2/10. Joe hates the winter in Atlanta and since he has had the chemo, his hot/cold body comfort level is a mess. It was 106 degrees on Sunday which was the hottest day in Houston EVER. Joe carries a flannel shirt around with him to keep him warm. We will spend half the time on Waikiki and the rest of the time in Maui which are our two favorite places. It is also a huge plus that it is still the United States thus health insurance is still good. We have used some of the medical places in Hawaii and were pleased with their care.<br /><br />Since Joe was having a PET Scan at 3PM on Monday, his diet became very restrictive starting at dinner time where he was not allowed to have any carbohydrates meaning bread, pasta, potatoes or dessert. I took the directions with me and read all the restrictions to him for dinner and for Monday morning. He said he understood and that he could so it. Dinner he had a salad with no croutons, a small <span class="blsp-spelling-corrected" id="SPELLING_ERROR_15">fillet</span> of beef and veggies. He ate all but half of his veggies.<br /><br />When I woke up on Monday morning (today), Joe was already up and standing in the kitchen taking his medicine with Orange Juice. I say what are you drinking. Joe: Orange Juice. Bonnie: Remember what we talked about last night at dinner. Joe: Oh, I only took a few sips and I will take the rest with water. Bonnie: Good Grief, Joe. You need to remember stuff. I hope it is not going to interfere with the PET Scan since you were only allowed water and decaf coffee, eggs and meat. We headed over to <span class="blsp-spelling-error" id="SPELLING_ERROR_16">IHOP</span> so Joe could eat two eggs and bacon which was all he could have up to 9:00 AM. After 9, no food, just water, no candy, mints, zilch. Since I was there, he didn't. Joe had his blood test first and his platelets were at 117 from 38 on Saturday. Joe is on his way to recovery from the last chemo. His white blood count was elevated at 35.1 but that was because of all the shots of <span class="blsp-spelling-error" id="SPELLING_ERROR_17">neupogin</span> which energizes the production of the <span class="blsp-spelling-error" id="SPELLING_ERROR_18">WBC</span>. His red blood count was at 4.85 in the normal range. The hemoglobin was 13.3 not too far from a low normal of 14. His <span class="blsp-spelling-error" id="SPELLING_ERROR_19">hematocrit</span> was in the normal range at 41. Good news indeed. We had from 10AM to 3PM to waste time before the PET scan over at the wonderful Mays Clinic 6<span class="blsp-spelling-error" id="SPELLING_ERROR_20">th</span> Floor. I had some running around to do such as faxing a rental agreement for the Maui rental for two weeks. I had copies to make of Costco's eye grid on Joe's Visual Defect the the Flex Department wanted. I delivered the report to Terry in Dr <span class="blsp-spelling-error" id="SPELLING_ERROR_21">Schiffman's</span> office. I also changed the July 1, MRI appointment of Joe's head to 6/10 so we could get all the tests done before we head home. The only opening left was 4:30 PM on 6/10<span class="blsp-spelling-error" id="SPELLING_ERROR_22"> </span>which means we would not get to leave to go back to Atlanta until Saturday 6/11 and arrive back home on Sunday evening on 6/12 IF Joe gets the expected release from the Lymphoma Department. On the other hand, I get my wish of attending the Braves/<span class="blsp-spelling-error" id="SPELLING_ERROR_23">Astro</span> game on Friday night on 6/10 at Minute Maid Park. Yippee!<br /><br />The PET Scan department at the Mays Clinic is efficiently run since Joe was called back for the prep at 2:50PM (yep, early). I did not expect to see him back till about 6PM so I thought that I would have three hours to catch up on the blog. I was about halfway done when our friends, Randy and Angela <span class="blsp-spelling-error" id="SPELLING_ERROR_24">Meador</span> of <span class="blsp-spelling-error" id="SPELLING_ERROR_25">Collierville</span>, TN came by to say hello. Randy also had Mantle Cell Lymphoma and has had both an Auto Stem Cell Transplant and an <span class="blsp-spelling-error" id="SPELLING_ERROR_26">Allo</span> Stem Cell Transplant. They have had quite a journey. They are delightful people to talk with so we talked nonstop catching up on each others lives. At 5:15Pm here comes Joe who had finished his PET Scan. Wow, that was a surprise. Randy asked Joe if he was hungry and Joe said he was starving. How about <span class="blsp-spelling-error" id="SPELLING_ERROR_27">Cleburne's</span> Cafeteria. Perfect says Joe. The four of us enjoyed not only the home cooked meals but also the continued lively conversation. It was a great way to end Monday.<br /><br />Tuesday, 6/7, we have the whole day off to rest. Joe will need it since both Wednesday and Thursday are jammed packed with tests and appointments from early in the morning till late in the afternoon. Tomorrow we have a dinner date planned with Joanie and Don Haley who live and work nearby where we are staying. We met Joanie and Don in <span class="blsp-spelling-corrected" id="SPELLING_ERROR_28">Valparaiso</span>, Chile last year at the Robinson Crusoe Hotel where we both were staying. I invited them to join us for the walking tour of <span class="blsp-spelling-corrected" id="SPELLING_ERROR_29">Valparaiso</span> with Michael the German Pirate. We all loved the tour and learned so much about the very artistic city on the steep hills by the Pacific Ocean. Small world isn't it and so very special that we will see each other again after enjoying our tour day in Chile.<br /><br />Ciao my dear people. Please continue to pray for a cure for all cancers.<br />BonnieBonnie Evanshttp://www.blogger.com/profile/09493718799661073722noreply@blogger.com3tag:blogger.com,1999:blog-6516483828963196550.post-51084589742421995332011-05-30T13:44:00.004-04:002011-05-31T00:16:44.723-04:005/30/11 PLATELETS NEEDEDThursday was Joe's regular fast track visit at <span class="blsp-spelling-error" id="SPELLING_ERROR_0">MDA</span> and on that day his platelets were at 98. Joe had a horrible time sleeping Thursday night since his cough became chronic thus hardly getting any sleep. Early Friday morning he told me that he was coughing so hard that he got a nose bleed which took 3 hours to stop. As he laid in bed, I called and left messages for his Infectious Disease department and the Lymphoma Department. When I got no return calls, I told Joe that we were going to Walk-In to the clinics and have him examined. He stated he did not want to wake me up last night since I needed my rest since he knew that I would have insisted on going to the Emergency Room. He wanted to stop by <span class="blsp-spelling-error" id="SPELLING_ERROR_1">Panera</span> Bread but I shot that down since it was the start of the three day Memorial Day Weekend and if we did not get to the clinics early, there would be little staff on duty thus great waits.<br /><br />His regular Infectious Disease nurse saw him and stated that the doctors were gone and asked what he wanted to do. I told her that Joe was told to come in if his cough got worse and it sure did. He had pneumonia previously so I thought that it was prudent to come in. She told us to go to his regular Lymphoma Department and get assistance there. It sounded like she was passing the buck to me. She stated that if the Lymphoma department wanted him to see an Infectious Disease doctor then she would page one or send us to the ER.<br /><br />Off we went to the Lymphoma Department where the receptionist quizzed me whether we had an appointment. When I did the sign in form, I wrote that smack on there so I knew where she was heading. I told her that Joe had a serious cough resurgence last night that it caused his nose to bleed for three hours. It would mean his platelets were low and he needed a strong cough suppressant so he could get some sleep. She said there was only one doctor on the floor but she would call the RN. We waited for a bit and one of the <span class="blsp-spelling-error" id="SPELLING_ERROR_2">RNs</span> came out and I told her the same story. She went back and spoke to the doctor and they scheduled him immediately for a blood test and to come back in one hour for a <span class="blsp-spelling-error" id="SPELLING_ERROR_3">PRN</span> to review it with us. We went to lunch at the Rotary House which was an escape from the hospital setting as well as far from cafeteria food. When we came back an hour later, we waited another hour to see the <span class="blsp-spelling-error" id="SPELLING_ERROR_4">PRN</span>. She was the same <span class="blsp-spelling-error" id="SPELLING_ERROR_5">PRN</span> who saw him the day before. She was concerned that his platelets has dropped by 50% in one day which could mean his platelets would be in the 20's on Saturday. She listened to his lungs and there was a significant difference in the sound with more wheezing and bubbling sounds. She sent us over to get a <span class="blsp-spelling-error" id="SPELLING_ERROR_6">XRay</span> of his lungs and also gave Joe a prescription for some codeine medicine along with an inhaler to help him breathe better. She also scheduled him for an additional blood test for Saturday and to see a PA in the Sarcoma department since this is where one goes when it is the weekend or a holiday. I picked up Joe's prescriptions at the 2<span class="blsp-spelling-error" id="SPELLING_ERROR_7">nd</span> floor pharmacy and made sure both drugs were in the bag. The inhaler cost a bunch more than I had expected but at this point I did not care. I was just glad I had it.<br /><br />Friday night Joe slept like a baby after taking the <span class="blsp-spelling-error" id="SPELLING_ERROR_8">meds</span> and using the inhaler. He was so happy to get such a good night's sleep and could have slept some more even though he went to bed at 9:15PM. Now we head to the 2<span class="blsp-spelling-error" id="SPELLING_ERROR_9">nd</span> floor Diagnostic Center for his 8:30 AM appointment to get Joe's blood drawn and tested and it was jammed packed with people. UGH. They are efficient there so it was not too bad of a wait and was done at 9:30AM. We went to the 9<span class="blsp-spelling-error" id="SPELLING_ERROR_10">th</span> floor Sarcoma Department to wait to see a <span class="blsp-spelling-error" id="SPELLING_ERROR_11">PRN</span> or PA. It was so crowded in both waiting rooms so we knew it would be a <span class="blsp-spelling-error" id="SPELLING_ERROR_12">lonnnnnnnng</span> wait and it was. The PA who saw us was one we had met with before in the Lymphoma Department we think. He was running around with his head cut off since there was so many patients. He told us Joe's platelets were down to 23 and the doctor's instructions on the PC stated he would need a platelet transfusion of 6 units. He had to put the order in on the system and the receptionist would let us know what time it would be. The appointment was not until 2:30PM so we were going to have lunch at the cafeteria but there was nothing there that seemed appetizing so we went back over to the Rotary House. Joe liked that so very much. The same waitress waited on us that we had the other day so it was quite pleasant. We head over to the 2<span class="blsp-spelling-error" id="SPELLING_ERROR_13">nd</span> floor <span class="blsp-spelling-error" id="SPELLING_ERROR_14">ATC</span> <span class="blsp-spelling-error" id="SPELLING_ERROR_15">Tranfusion</span> Unit and it was packed. Joe's name was called at 4:00 and we both followed the Vital Sign person through the door. When I turned around a second later, Joe was no longer standing beside me. He had gotten dizzy as he was entering the door and someone caught him and put him down in a chair. He had been waiting such a long time and stood up too quickly. Good Grief! His bald head was sweating profusely but he was coherent. The platelets got done about 5:15PM. We got back to the hotel about 5:45 and just stayed there. It had been a long day. About 8PM Joe requested Chinese food so I ordered some on line from PF <span class="blsp-spelling-error" id="SPELLING_ERROR_16">Chang's</span> since it is only about 5 minutes from our hotel. We got some Hot and Sour Soup, spring rolls and two mini desserts. It was perfect. After eating Joe took his <span class="blsp-spelling-error" id="SPELLING_ERROR_17">meds</span> and headed back to bed early again. I reminded him that we were suppose to drive to Victoria, Texas, two hours south of Houston, to go to Whitney Wilkinson's church, and be treated to lunch at her parents home. If he was too tired or weak, that he could stay "home" and rest. He said let's see how he felt in the morning since he really wanted to go.<br /><br />Sunday morning I got up at 7:15AM and Joe got up with me. We stopped at <span class="blsp-spelling-error" id="SPELLING_ERROR_18">Panera</span> Bread and said he was so tired that he decided that it was best for him to get more sleep and rest all day and for me to go to Victoria by myself. I dropped him off at the hotel front door and off I headed to Victoria on US59 South which will someday be Interstate 69. I turned on my radio loudly and cruised on down the flat ranch and farm lands of Texas. I had no issues in finding The First <span class="blsp-spelling-error" id="SPELLING_ERROR_19">Presbytertian</span> Church on Navarro Street in Victoria since Whitney had told me that it wason the main street of Victoria. The church looked like it had been there for a very long time. I came in through the side entrance of the church so I was able to walk though the whole church where people stopped me to introduced themselves. I got to the church lobby where I had waited only a few minutes till Whitney and her parents, Bonnie (YES!) and Bill Wilkinson, came in. Bonnie saw me first and gave me a big welcoming hug. Whitney's Mom is quite attractive and well dressed and so young looking. I can see where Whitney got her good looks and personality from. Her Dad was equally gracious in greeting me and Whitney and I gave each other a huge hug and lots of big happy smiles. They introduced me to so many people that it was a blur but they were all so friendly. Their minister's name is Kathryn who gave an inspirational sermon. She was such a good speaker using no microphone. The end of the service ended with a triumphant organ music arrangement of patriotic songs with the last one being the "Star Spangled Banner" which the congregation sang together. Quite appropriate to remember the brave men and women who lost their lives fighting for the freedoms we enjoy as well as remembering their families. Wonderful! Whitney took some photos of their new gorgeous shiny black grand piano which they had purchased for only $10,000 from a church that had closed. Whitney's Mom took photos on my iPhone of Whitney and me together. <span class="blsp-spelling-error" id="SPELLING_ERROR_20">Eastminster</span> Presbyterian Church back home in Stone Mountain would be delighted to see Whitney and me together at her home church. I followed Whitney home from church to her parent's home about 10 minutes away. As soon as I walked into the home, I was greeted with another warm hug and hello from Bonnie and Bill along with a cool glass of Sangria! I loved the large Great Room in their home decorated in a Western decor with some prized animal heads on the wall where two of them looked as if they were from Africa. The animals were imported from Africa to central Texas Hill Country to save the species and they have flourished. The patio and back yard look lush even though Texas is in a serious drought. In the middle if the yard is the "Beach House". You have to ask Whitney why they call it that. It was so cool looking. There are two rooms. On the right is a greenhouse and on the left is Bill's office. On the outside wall there were all kinds of farm and garden tools attached in a perfect pattern. Each tool had a story from the past. It was hot and very windy or we would have had lunch outside. How could I forget and not tell you about Whitney's white ball of affectionate curly hair doggy. She adores Whitney and is so sweet that she sat between Whitney and me on the couch while we grabbed for hours. She got scratched and petted from both sides. In heaven! We had lunch in kitchen where there was a bay window looking out into the back yard. We had yummy crispy Tacos for lunch and their own hot homemade spicy <span class="blsp-spelling-error" id="SPELLING_ERROR_21">picante</span> sauce. The dishes were colorful and matched the tablecloth. What a perfect meal to engage in lively friendly conversation. Whitney learned new family history where her grandfather had met Pancho Villa unwillingly in Mexico while trying to eradicate hook and mouth disease.Pancho Villa let the crew of men go, thankfully! Bill showed me some extraordinary artifacts that were handed down through several generations of his family. One was an arrowhead pierced into a large spinal cord joint. Another was a petrified piece of wood made into an arrowhead which was about 6000 years old. Fascinating stuff. Bonnie told me the story of an breakfront she had restored from a severely broken down display cabinet from her ancestors when they cleaned out the home after the great grandmother died. The picture before showed it as a piece of junk where it appeared nothing could be done with it but Bonnie had a vision. It is now an incredible piece of restored furniture that will be passed along to future generations with a great story to tell. It use to keep medicine bottles and salves for the animals on the ranch. I found out from the family photos displayed on the large bookcase that Whitney and her sister are hunters. I saw a picture of Whitney who was about 14 years old with her prized deer with antlers. She shot it at their family ranch located in south Texas about 100 miles from Laredo. Who would have thought that petite cute Whitney would be a great white hunter? Not me!<br /><br />Bonnie served us an amazing dessert that if I had known what was in it, I would had politely declined. It was an enchilada rolled with a can of cherry filling with a finger licking sugar cinnamon frosting with Blue Bell Vanilla Ice Cream. It is probably one of the best desserts I ever had and reminded me of peach cobbler but even better. There was no way I could guess it had cherry filling since I do not like cherry filling. I ooh and <span class="blsp-spelling-error" id="SPELLING_ERROR_23">ahh</span> it as I ate it as I raved how wonderful it was. They got a real kick out of that.<br /><br />I left their home about 3:30PM to head back to Houston. Bonnie told me about a little store about halfway between Victoria and Houston where I needed to stop and walk around the store which has a gourmet fresh meat, cheese and all kinds of preservatives. She told me when I walk in the front door to look to my immediate left and buy some of the best Jalapeno Cheese Bread in the world. I found the store and I bought some of that bread.<br /><br />What a great day I had with the Wilkinson family! I wish that Joe had felt better so he could have enjoyed the visit as much as I did. We will just have to come back someday and visit them again. The winds of love stretched out its arms again. Amazing Grace how sweet the sound.<br /><br />I called Joe just as I entered the Houston City Limits and asked him if he would mind if I stopped at <span class="blsp-spelling-error" id="SPELLING_ERROR_24">Chico's</span> to shop their Memorial Day weekend sale. Since he said it was <span class="blsp-spelling-error" id="SPELLING_ERROR_25">ok</span>, I took a slight detour to the Chico's Outlet at <span class="blsp-spelling-error" id="SPELLING_ERROR_26">Meyerland</span> off of Interstate 610. I bought a few things and was their last customer of the day when I left at 6:15PM.<br /><br />When I got to the hotel, Joe was antsy to get out of the hotel. He had slept till noon and just hung out in the room with Max and took it easy. He felt so much better and enjoyed my tale of the visit with the <span class="blsp-spelling-error" id="SPELLING_ERROR_27">Wilkinsons</span>. I got tickets on line to see The Hangover II that started at 7:05. Joe had to have popcorn so he went to the concession stand while I went searching for two seats together since the show was sold out. I waited and waited for him to come into the theater. I started to worry so I asked my seatmates to save my valuable seats while I go search my missing husband. He was not at the concession stand, not in the men's room and not any where. Oh my, I was really worried now what if he got dizzy and got sick or went into one of the 22 other theaters. I went back into the theater and was stood in front and tried to look at the stadium seating and there he was about 10 rows up sitting alone and eating his popcorn. I pointed at him to come down and come over to me. He figured out my strong hand signals that he better come quick and we were now seated together. From now on we will both enter the theater first, get our seats, then he can go to the concession stand. He has got to have his popcorn. The movie was not as funny as the first one but still pretty funny and crazy. Joe laughed out loud a bunch so that was a good thing. After the show at 9PM we headed to <span class="blsp-spelling-error" id="SPELLING_ERROR_28">Chuy's</span> for some great Mexican food that was close by. On the <span class="blsp-spelling-error" id="SPELLING_ERROR_29">flatscreens</span> in the bar was the Braves baseball game so we requested to eat there at the tall tables where the table was a breast level. It felt a bit weird for me. I had a Margarita to reward me not nagging Joe about getting lost in the theater.<br /><br />Joe went right to bed since we had another early wake up call for a blood test at 7:15AM at the Diagnostic Center. We started with a bagel break at <span class="blsp-spelling-error" id="SPELLING_ERROR_30">Panera</span> Bread and got to the center right on time. Next we headed up to the 9<span class="blsp-spelling-error" id="SPELLING_ERROR_31">th</span> floor to get the results and be seen by one of the medical staff on duty. Two hours later we got called back and sure enough Joe needed platelets again since his platelets were now at a tiny "6" from 23 two days ago. The appointment for the transfusion was not until 11:30 AM. We had plenty of time to waste so we went down to the second floor where the Gazebo is and found two reclining chairs where I slept for several hours. We walked over to the <span class="blsp-spelling-error" id="SPELLING_ERROR_32">ATC</span> Transfusion waiting room at 11l30 and it was wall to wall people with people standing in the hall. Groan, another long wait. Joe got called back to a bed finally about 1;00. It felt like forever. It is freezing cold in these rooms since it is <span class="blsp-spelling-corrected" id="SPELLING_ERROR_33">believed</span> that patients get less nausea when it is cold. I dressed in jeans, a long sleeved top, a dress jacket and used Joe's flannel shirt and two blankets while Joe got his transfusion of 6 units of irradiated platelets in a 300ml bag. I did not know that they do not use a pump for it to infused the platelets into the veins. It is just plain good <span class="blsp-spelling-error" id="SPELLING_ERROR_34">ol</span>' gravity that makes it work. Joe was finished with his platelet infusion at 2:15PM. We headed to lunch on our side of town at a new place called The Brisket House on <span class="blsp-spelling-error" id="SPELLING_ERROR_35">Woodway</span> Drive. It is own by an Aggie. I had read a great review in one of the weekly papers that are free everywhere like Creative Loafing in Atlanta. When we got to the counter, Joe got a weird look on his face so I knew he had another dizzy spell so I sat him down and got him some food into him quickly. All he wanted was two pieces of Pecan Pie. He loved it. I had some fantastic Beef Brisket where it was slow cooked for 14 hours. The layer of fat was crispy black with great spices and the beef was tender and tasty. I liked it so much better the <span class="blsp-spelling-error" id="SPELLING_ERROR_36">Goode's</span> BBQ plus the BBQ sauce was better too.<br /><br />When we got to the hotel, Joe changed into shorts and laid on the couch with his feet on my lap and I massaged his legs and feet. He fell asleep with a smile on his face. We both ended up taking a nap and woke up about 6PM. At 8PM Joe said he was hungry so we decided to get a Cheese Pizza at Barry's Pizza on Richmond Ave. It was good!<br /><br />Joe has headed to bed early again since we had a medical appointment at 7:30 at <span class="blsp-spelling-error" id="SPELLING_ERROR_37">MDA</span> with the Ophthalmologist where they will test his eyes for 4 to 6 hours. When Joe had gotten an eye exam at Costco for new glasses, the examiner stated Joe had a Visual Defect. He has issues seeing things coming from the the side and below. He could not state the correct number of fingers when the <span class="blsp-spelling-error" id="SPELLING_ERROR_38">MDA</span> PA examined him in the hospital and I had stated that I would like for Joe to see an expert in eyes. So we will see one tomorrow. I sure hope that it is nothing serious. We shall find out.<br /><br />Joe's next blood test is not scheduled till Thursday again but if he has any bleeding then we will go in and get his blood tested. Joe is at the nadir point after chemo and it is the same pattern as he has had in the past after <span class="blsp-spelling-error" id="SPELLING_ERROR_39">HyperCVAD</span>-R Part B. His blood counts should start to improve from hence on.<br /><br />So that is it folks. Thank you for reading my blog. It has been therapeutic to me.<br /><br />Ciao!Bonnie Evanshttp://www.blogger.com/profile/09493718799661073722noreply@blogger.com4tag:blogger.com,1999:blog-6516483828963196550.post-9579716959723421202011-05-24T00:26:00.005-04:002011-05-24T00:59:18.903-04:005/23/11 Last Round Done! Released!Thankfully Joe has successfully completed round 8 of the <span class="blsp-spelling-error" id="SPELLING_ERROR_0">HyperCVAD</span>-R chemotherapy today and was released from <span class="blsp-spelling-error" id="SPELLING_ERROR_1">MDA</span> Hospital at 2:30 PM after the results of the <span class="blsp-spelling-error" id="SPELLING_ERROR_2">Methrotrexate</span> levels were under .1. There were so many times since October 11, 2010 when we did not think that Joe would be able to complete all eight rounds. To be able to type those words is a great feeling with the major milestone met. We will continue to be in Houston for the two week recovery period from the chemo followed by a whirlwind of staging tests starting on 6/6. We think that we will be home on Saturday, 11<span class="blsp-spelling-error" id="SPELLING_ERROR_3">th</span> of June, if all goes well. From our past experiences we have run into various infections that set us back or rather put us in a hold pattern. It was hard emotionally on Joe more than me since it just wanted to get over it. He is not the type of person who can handle being restricted to a hospital or hotel room. One unusual thing that happened with Joe that after the first two rounds of chemo, he refused to take showers. He would clean himself up pretty good with a washcloth and soap and always smelled good. The area that got a mess was his head and hair since he did not wash it. I suppose he thought there was so little of it so why bother. While he was in the hospital this past week, I shaved the remaining hair off his head and there was a massive amount of dead skin and crud on his scalp. I took him into the bathroom and washed his scalp for about 30 minutes until it looked sparking and shiny clean. He had no idea that it was that bad though I had I mentioned it to him many times. After awhile, I just stopped bringing it up, since it seemed I was nagging him about so much stuff such as drinking more liquids, eat all his food or some food, exercise by walking which he stopped doing. He lost so much weight the last two weeks that the <span class="blsp-spelling-corrected" id="SPELLING_ERROR_4">dietitian</span> wrote on his records that his weight lost over two weeks was considered "severe." She wrote that his weight was down to 156 pounds which scares the heck out of me. Joe can be quite stubborn so I have to be more creative in getting him to do the right stuff to help himself.<br /><br />Last night Joe and I went up to the 17<span class="blsp-spelling-error" id="SPELLING_ERROR_5">th</span> floor Family Quiet Room to visit with Holli and Johnny Baker from <span class="blsp-spelling-error" id="SPELLING_ERROR_6">Baytown</span>, Texas. I have become friends with Holli via the <span class="blsp-spelling-error" id="SPELLING_ERROR_7">ACOR</span>.ORG on line support list for Mantle Cell Lymphoma. We have become cheerleaders and can discuss the most basic of bodily functions with o<span class="blsp-spelling-error" id="SPELLING_ERROR_8">ut</span> worrying about it offending any one of us. Holli had her hat on with a mask and gloves to protect her from germs. We had to pretend to hug each other from a distance since Holli's biggest enemy is infections since her immune system is zero. Her stem cell donor is from Germany and she is so grateful to that person. In a year she will find out the person's name and where they live. It took a long time for Holli to get a match so she was so excited and thrilled that a 8 out of 10 match was found. Holli has had the usual reactions such as diarrhea, nausea, lost of appetite, exhaustion, sores in her mouth and nasty blood blisters in her mouth that burst every so often. Holli is also doing a clinical trial where she got chemo before, during and after the stem cell transplant. Johnny, her husband, has been by her side and such a great caregiver and partner.<br /><br />Please continue to pray for Joe that infections will stay away and that his re-staging results will show no cancer in his body so we can come home. Continue to pray for a cure for all cancers and strength for the families who are in their battles to win their war.<br /><br />Ciao!Bonnie Evanshttp://www.blogger.com/profile/09493718799661073722noreply@blogger.com2tag:blogger.com,1999:blog-6516483828963196550.post-72235019703506915472011-05-21T00:20:00.003-04:002011-05-21T01:00:10.847-04:005/21/11 LAST ROUND!On 5/20 Joe started the day with visits to Infectious Disease to determine whether his infections were under control so he could do his last round of <span class="blsp-spelling-error" id="SPELLING_ERROR_0">HyperCVAD</span>-R. We both sat on the edge of our chairs with nervous anticipation. They cleared him! It was such a huge relief since Joe was not in any mood for any more postponements.<br /><br />The afternoon of 5/20 Joe had his blood tests followed by the very important visit with Dr. <span class="blsp-spelling-error" id="SPELLING_ERROR_1">Romaguera</span>. Joe was cleared to enter <span class="blsp-spelling-error" id="SPELLING_ERROR_2">MDACC</span> for his last round that very day. There were some very important items to work out with all the departments that has worked on Joe with his medications. The <span class="blsp-spelling-error" id="SPELLING_ERROR_3">Pharm</span>-D advised us that one of Joe's antibiotics <span class="blsp-spelling-corrected" id="SPELLING_ERROR_4">interferes</span> with the toxicity of <span class="blsp-spelling-error" id="SPELLING_ERROR_5">methrotrexare</span>. The <span class="blsp-spelling-corrected" id="SPELLING_ERROR_6">pharmacist</span> recommended some substitutions that had to approved by Infectious Disease, There were some other items that were to be discontinued because of the interference with <span class="blsp-spelling-error" id="SPELLING_ERROR_7">methotrexate</span> such as 81mg of aspirin, B12 complex and I forgot what else. It took from 2Pm to 7:30pm before Joe was finally admitted to the hospital. To our approval, Joe was placed on the awesome 15<span class="blsp-spelling-error" id="SPELLING_ERROR_8">th</span> floor of the new tower where the rooms are huge and very comfortable. Joe's first IV was <span class="blsp-spelling-error" id="SPELLING_ERROR_9">Rituxan</span> that started at 11PM and ended about 4Pm. He had no issues.<br /><br />Today at 11AM they started the 24 hour infusion of <span class="blsp-spelling-error" id="SPELLING_ERROR_10">Methotrexate</span> which is so very strong where there can be serious issues with the kidneys so vital signs are watched very closely. Joe had some complaints of the intermittent <span class="blsp-spelling-corrected" id="SPELLING_ERROR_11">diarrhea</span> again so they got a sample of it to be tested. Today was the first time that Joe complained of some burning when he urinated. So I made an intense effort to have him drink more fluids. By the evening the burning urination had ceased but they took a urine sample anyway. His darn cough continues and is a little worse than it has been. All of these complaints make me so on edge since I am so conscious of the danger of infections. I suppose that I am more on edge since we are close to closing chapters of this stage of fighting the beasts. A <span class="blsp-spelling-corrected" id="SPELLING_ERROR_12">dietitian</span> came around at the behest of <span class="blsp-spelling-error" id="SPELLING_ERROR_13">Romaguera</span> because of Joe's weight loss, He is now down to 162 pounds from 169 three weeks ago. She gave Joe suggestions to add more calories and some fruit such as bananas and yogurt to control the intermittent <span class="blsp-spelling-corrected" id="SPELLING_ERROR_14">diarrhea</span>. I could tell that he was not seriously paying attention which drives me nuts.<br /><br />Here is some of Joe's counts today since I know so many people are interested in following it.<br /><br />White Blood Count 19.4 (high from the <span class="blsp-spelling-error" id="SPELLING_ERROR_15">neupogin</span> shots)<br />Red Blood Count 5.14 (normal)<br />Hemoglobin 14.5 (normal)<br /><span class="blsp-spelling-error" id="SPELLING_ERROR_16">Hematocrit</span> 45.4(normal)<br />Platelets 288 (normal)<br /><span class="blsp-spelling-error" id="SPELLING_ERROR_17">ANC</span> 16.49(high but a good thing)<br /><span class="blsp-spelling-error" id="SPELLING_ERROR_18">ALC</span> .78 (low, <span class="blsp-spelling-error" id="SPELLING_ERROR_19">Rituxan</span> working)<br />Electrolytes all in normal range<br /><br /><span class="blsp-spelling-error" id="SPELLING_ERROR_20">Romaguera</span>, the PA and <span class="blsp-spelling-corrected" id="SPELLING_ERROR_21">pharmacist</span> all stated that Joe;s rebound of his blood counts have been quite remarkable for a 68 year old from the <span class="blsp-spelling-error" id="SPELLING_ERROR_22">MCL</span> and <span class="blsp-spelling-error" id="SPELLING_ERROR_23">MF</span> perspective. They stated that Joe has done better than other patients in their 40's and 50's. Joe is a good example why an oncologist should review the entire physical health of the patient and not look at their age with using <span class="blsp-spelling-error" id="SPELLING_ERROR_24">HyperCVAD</span>-R.<br /><br />I was happy to see tonight on the future schedule that Joe has appointments for a massive amount of tests on 6/6, 6/7. 6/8 to <span class="blsp-spelling-corrected" id="SPELLING_ERROR_25">re-stage</span> his disease. He has a final late afternoon visit with the Lymphoma Oncologist to see if he is ready ti be discharged from the Lymphoma Department. The long journey is getting close to ending this trip.<br /><br />Praying for success and a smoother ride.<br /><br />Good night!Bonnie Evanshttp://www.blogger.com/profile/09493718799661073722noreply@blogger.com2tag:blogger.com,1999:blog-6516483828963196550.post-40053036133560339112011-05-14T23:49:00.003-04:002011-05-15T00:55:45.518-04:005/14/11 COUNTS LOOK GREATEven though we got to the Lymphoma Department at 8am, time seemed to drag. Every chair was taken in the hallway which is a queue to get one's blood drawn. Since it looked like a long wait, I headed down to the 2<span class="blsp-spelling-error" id="SPELLING_ERROR_0">nd</span> floor pharmacy to ask where the three antibiotics were that were missing from the order when Joe left the hospital the day before. The clerk looked it up and it turned out that those three drugs were dispensed at the 10<span class="blsp-spelling-error" id="SPELLING_ERROR_1">th</span> floor pharmacy. Now, how the heck was I suppose to know that. You would think someone would had advised me but no sirree.<br /><br />There was no line at the 10<span class="blsp-spelling-error" id="SPELLING_ERROR_2">th</span> floor pharmacy when I got up there and sure enough, they had the missing important antibiotics. It seemed that no one was interested in figuring out how that happened since all the drugs were submitted by the pharmacist at the same time when we were checking out. At least the on floor pharmacist did call me back and let me know that I had picked the drugs up but had no idea was the breakdown was. I suppose I should call the Patient Advocate about it to prevent that from happening to someone else.<br /><br />Joe still was not finished with the Fast Track labs by the time I got back to the Lymphoma Department. He also got his vital signs completed and his weight was 165. The guy can not seem to gain weight. Oh how I would love to have that problem! For some reason the lab results took longer than it normally does since Joe was not called back to speak with a physicians assistant until 11AM. We were antsy since we knew that a RN would be coming to our hotel to instruct me on giving Joe the IV of <span class="blsp-spelling-error" id="SPELLING_ERROR_3">Cubicin</span> as well as the supplies by noon. The physician assistants who do the visit with the patient after Fast Track do not know diddly squat about the <span class="blsp-spelling-error" id="SPELLING_ERROR_4">patient's</span> history. It is so weird to know more what to do that this person. When I saw the results of Joe's blood tests, I was <span class="blsp-spelling-error" id="SPELLING_ERROR_5">so happy</span> since the numbers looked fantastic. Here are a few of the results.<br /><br />White Blood Count 6.2 (NORMAL)<br />Red Blood Count 5.33(NORMAL)<br />Hemoglobin 15.4(NORMAL)<br /><span class="blsp-spelling-error" id="SPELLING_ERROR_6">Hematocrit</span> 48.0(NORMAL)<br />Platelets 99 (Low but after chemo this is GREAT)<br /><br />I recommended to the PA that Joe stop getting the <span class="blsp-spelling-error" id="SPELLING_ERROR_7">Neupogin</span> shots since his white blood counts are normal. The PA agreed. We will go back on Monday for another Fast Track and review.<br /><br />We got back to the hotel about 11:30AM and waited for the RN to show. At Noon she called and stated that she would be here between 1:30 and 2PM so Joe and I went out to lunch. Of course Rosalyn, the RN, did not show up until PM. She has NO supplies or medicine with her. She was under the impression that she was to come to us for five days to administer the IV. I advised her that she was only to instruct me. She gathered up her stuff and left before I could get Applied Health Care on the phone. I was not happy since it was now 2:15PM and I knew they would tell me that it was too late to get everything done now so I was very assertive and demanding. Meanwhile a mean line of thunderstorms were about to hit Houston in about 10 minutes. I told them that we would come to them for the supplies and instruction since they were close to where were staying. After negotiating with several people, we were on way over to their office off of Richmond Avenue and Fountain View.<br /><br />As we stepped out of our hotel the wind was blowing fiercely and the rain came down in sheets sideways. I mumbled a few choice words under my breath. I suppose I was peeved because of the screw up in the drugs the day before, the long wait in Lymphoma, then waiting some more for the RN to show and then she rudely leaves. Heck, it is my husband's life at stake here and they needed to get their act together.<br /><br />It was still pouring rain sideways when I finally found the building which was strange how it was located. I dropped Joe under the overhang so he would not get wet. I parked the car and got wet. When I got to where Joe was, he said he guy standing outside stated that Applied <span class="blsp-spelling-error" id="SPELLING_ERROR_8">Healthcare</span> would bring the supplied down to us as Joe was dialing their number. I just ignored them both and found a door open and went up to the 2<span class="blsp-spelling-error" id="SPELLING_ERROR_9">nd</span> floor and found the office and BING, rang the bell for some attention. They treated is very nicely up there as I got the instructions and supplies. It would be much easier to do this IV rather than the <span class="blsp-spelling-error" id="SPELLING_ERROR_10">ERAXIS</span> that I had done previously. Hey, I found a blessing. We finished it all up by 4PM then we both crashed and took a long nap.<br /><br />On Friday we went to Memorial Park with Max and got out our folding chairs at a unpopulated area of the picnic grounds where Max could explore without us worrying about him bothering anyone else. We sat under the shady oaks as Max did some business and sniffed his way around the area. We dropped Max back at the hotel as we decided to go to the movies to see "Bridesmaids." It was hysterical. I could tell Joe was not thrilled with the movie since he kept looking at this watch every 5 minutes. I ignored him since I needed that good therapeutic hardy laughing. Melissa McCarthy stole the movie but Kristen Whig was quite good.<br /><br />Since we skipped lunch, we decided on having <span class="blsp-spelling-error" id="SPELLING_ERROR_11">LINNER</span> at <span class="blsp-spelling-error" id="SPELLING_ERROR_12">Pappa's</span> Burgers after the movie which I love. Yummy burgers to eat as well as some great fresh delectable french fries. We stayed at the hotel wand watched Friday Night Lights which is such a great show. It did not disappoint us as usual.<br /><br />Saturday we slept late again. Joe is really sleeping long these days between 12-13 hours a night. I stay up about 3 hours later so it all works out. I took Max for a walk outside the hotel. It was "Be a Tourist Day," We drove down Interstate 45 south to Galveston. What magnificent large stately old Victorian homes there are in the Strand area of Galveston. We have got to come back here to drive all through the back streets to see these colorful beauties. Today Joe wanted to ride the Ferry from Galveston to Balboa. There was a long line of cars and trucks to ride the Ferry. I suppose we waited for about 45 minutes before we were parked on the ferry. It was done very orderly and efficient. To our total surprise the ferry was FREE! Well, of course, it is at taxpayers expense and needed in that area. The ride over to Balboa Peninsula took maybe 30 minutes on the warm clear day. Joe really enjoyed it tremendously. He was looking forward to a seafood lunch but alas the 50 mile peninsula had no places to eat that looked appetizing or clean. The area was big for people who seriously loved to fish, There was beach home on huge stilts and we could see where previous hurricanes had made their mark. We also saw lots of oil pumps some which were totally rusted and many still pumping away. In the far distance on the Gulf of Mexico we could see several large oil rigs. The beaches currently are inundated with huge batches of seaweed which happens rarely. We saw it on the nightly news the night before. It will take hundreds of trucks to get the beaches presentable again. Yuck!<br /><br />We decided to eat <span class="blsp-spelling-error" id="SPELLING_ERROR_13">LINNER</span> again in Houston near our hotel at <span class="blsp-spelling-error" id="SPELLING_ERROR_14">Villlagio's</span> on San Felipe. We got there at 4:40Pm and groaned when we saw the sign on the door stated they opened at 5PM. Blessedly, the owner invited us in and we had our choice of seating so we sat in a booth by the window. Oh, how we both enjoyed our meals, It did help that we were hungry. This is the place that has the BEST Tomato Basil Soup that I have ever had and of course I had a cup.<br /><br />We were back in our hotel room by 6PM and settle in for the night. I must admit that we were both pretty bored.......no, we were very bored. Joe hit the sack at 10PM. I can not possibly go to bed that early so I decided to write on the blog. Now it is almost midnight so I put the time to use very wisely.<br /><br />Ciao, my family and friends. Good night,Sweet Dreams!Bonnie Evanshttp://www.blogger.com/profile/09493718799661073722noreply@blogger.com4tag:blogger.com,1999:blog-6516483828963196550.post-39749214968613767562011-05-11T23:58:00.000-04:002011-05-13T16:23:28.311-04:005/11/11 RELEASED! COUNTS UP!!Joe <span class="blsp-spelling-error" id="SPELLING_ERROR_0">texted</span> me that <span class="blsp-spelling-error" id="SPELLING_ERROR_1">Romaquera</span> was releasing Joe from the hospital today.Whoopee! I <span class="blsp-spelling-error" id="SPELLING_ERROR_2">texted</span> then called Joe. He did not know his counts but they must be okay. The Fellow with <span class="blsp-spelling-error" id="SPELLING_ERROR_3">Romaguera</span> cautioned that many pieces had to fit together for Joe to be released since a <span class="blsp-spelling-error" id="SPELLING_ERROR_4">pharmacy</span> person would have to go over medications and get new ones submitted/ The Case worker would have to contact <span class="blsp-spelling-error" id="SPELLING_ERROR_5">Caremark</span> and Applied Home Health Care to coordinate the delivery and instructions of the antibiotic IV that I would have to give Joe for five days. As the day went on, we knew that it would be in the evening that Joe would be released so the medical staff decided that they should do the IV of the antibiotic starting at 6PM and would end at 7PM since it could not be arranged to have the IV and supplies delivered this afternoon to our hotel. It was fine with us since we were both so happy that Joe was getting released today which was not expected by us.<br /><br />When I got to the hospital room with Joe's bag of current <span class="blsp-spelling-error" id="SPELLING_ERROR_6">meds</span> the pharmacist was going over the <span class="blsp-spelling-error" id="SPELLING_ERROR_7">meds</span> one by one. Some will be omitted and destroyed and new ones in their place plus some new ones. It is quite something to keep up with all of it. I highly recommend a pill organizer that covers four times a day or it would be impossible to keep it all straight. As that was being called in, I made arrangements with Applied Home <span class="blsp-spelling-error" id="SPELLING_ERROR_8">Healthcare</span> to deliver the IV <span class="blsp-spelling-error" id="SPELLING_ERROR_9">meds</span> and supplies by noon Thursday. I went down to the 2<span class="blsp-spelling-error" id="SPELLING_ERROR_10">nd</span> floor pharmacy to put up the called in drugs and also get 2 new boxes of heparin used to flush Joe's <span class="blsp-spelling-error" id="SPELLING_ERROR_11">CVC</span> lines daily. The IV antibiotic that will be given for 5 days is called <span class="blsp-spelling-error" id="SPELLING_ERROR_12">DAPTOmycin</span> 400mg, after <span class="blsp-spelling-error" id="SPELLING_ERROR_13">heta</span> is done Joe will take <span class="blsp-spelling-error" id="SPELLING_ERROR_14">Doxcycline</span> 100mg twice a day for 7 days. In addition to those antibiotics Joe will take <span class="blsp-spelling-error" id="SPELLING_ERROR_15">AZITHromycin</span> 500 mg once a day for two months as well as <span class="blsp-spelling-error" id="SPELLING_ERROR_16">Ethambutol</span> 1200mg also once a day for 2 months. The later two are for the stubborn germ <span class="blsp-spelling-error" id="SPELLING_ERROR_17">mycobacterium</span> <span class="blsp-spelling-error" id="SPELLING_ERROR_18">gordonae</span> in his lungs. There are lots of other drugs he takes also besides the antibiotics. He will take <span class="blsp-spelling-error" id="SPELLING_ERROR_19">Neupogin</span> for just three days since his counts are on the upswing.<br /><br />By the time I got to Joe's room again, a copy of the blood test was in. Here are a few of the counts.<br /><br />White Blood Cells 2.0 (low) bu much improved from day before<br />Red Blood Cells 4.99 (normal)<br />Hemoglobin 14.4 (normal)<br /><span class="blsp-spelling-error" id="SPELLING_ERROR_20">Hematocrit</span> 44.5 (normal)<br />Platelets 69 (low but stable)<br />Absolute <span class="blsp-spelling-error" id="SPELLING_ERROR_21">Neutrophil</span> .89 (low but above ,5 which allowed Joe's release from hospital)<br /><br />Joe finished his IV of antibiotics at 7PM and we left the room at 7:30PM. Joe just glowed with happiness. He strutted down the hall like John Travolta. Joe requested to eat at <span class="blsp-spelling-error" id="SPELLING_ERROR_22">CHUYS</span> Mexican Restaurant which was jammed pack with people but luckily we had a corner booth away from other people. It was finally raining in Houston after 57 days of none and Joe enjoyed the rain also.<br /><br />We go to the studio at about 9PM. I started to get the drugs together to put them in the organizer. There were three that had to be thrown away. After an hour of setting it up, I realized that the three new antibiotics were missing. Pharmacy never gave them to me. Since he pharmacy closed at 8PM and it was now 10PM, there was nothing that I could do. I even paged the on floor pharmacist and she told me that she did call it in but since it was so late, I would have to wait till tomorrow to get it resolved. I was peeved that the drugs were not given since Joe was suppose to take a dose tonight of each of them. If I had not <span class="blsp-spelling-corrected" id="SPELLING_ERROR_23">meretriciously</span> went over the pills I had and the list from the hospital, I would have not realized they were missing. A lesson learned for all of us caregivers.<br /><br />Joe fell asleep right away at 10:15PM. He is always s exhausted when he comes home after an in hospital visit. I am beat too but I know so many of you are anxious to know what happens so thus you got this blog tonight.<br /><br />Tomorrow we have an 8AM appointment with <span class="blsp-spelling-error" id="SPELLING_ERROR_24">FastTrack</span> for a blood draw then a visit with Lymphoma medical staff. I will get the drug situation straight and try to find out who caused the goof.<br /><br />Thank you for your heartfelt prayers since Joe is on the road to recovery and "home."<br /><br />Ciao!Bonnie Evanshttp://www.blogger.com/profile/09493718799661073722noreply@blogger.com0tag:blogger.com,1999:blog-6516483828963196550.post-15635542083114775362011-05-10T23:53:00.003-04:002011-05-11T00:35:44.000-04:005/10/11 New CVC line and countsGood Evening!<br /><br />Today was a busy day for Joe where a new <span class="blsp-spelling-error" id="SPELLING_ERROR_0">CVC</span> dual lumen line was put into his left arm. The <span class="blsp-spelling-error" id="SPELLING_ERROR_1">CVC</span> had two people come to Joe's room early today to put it in. Joe says that it does not hurt when it is inserted. They put a tube into a vein in his arm and it does up to his shoulder, along the shoulder blade then down to above the heart. It is an amazing thing that they are able to do such a thing. After putting the new one in, Joe has to be taken down to <span class="blsp-spelling-error" id="SPELLING_ERROR_2">XRay</span> on the 2<span class="blsp-spelling-error" id="SPELLING_ERROR_3">nd</span> floor to get a picture of it to assure that it is placed correctly without any kinks or wrapping. Once they are assured that it is okay then the old one can be removed.<br /><br />We found out there was an issue with the placement when the RN came into Joe's room with an armful of heparin syringes which she told us that is was for a Power Flush but she did not tell us why. The <span class="blsp-spelling-error" id="SPELLING_ERROR_4">CVC</span> team came back in and they told us the <span class="blsp-spelling-error" id="SPELLING_ERROR_5">CVC</span> line about the heart was twisted and they are hoping that the Power Flush would untwist it. Each time they entered the flush, Joe had to lean over and take a deep breath. Next Joe would have to get another <span class="blsp-spelling-error" id="SPELLING_ERROR_6">XRay</span> on the 2<span class="blsp-spelling-error" id="SPELLING_ERROR_7">nd</span> floor to see if the Power Flush worked and untwisted the lines. Joe said the X-Ray was finished at 6:10 PM and he had to wait for hospital transportation to take him back to the room. They should let me take him and bring him back since it would be way more efficient. Waiting for transportation for another tests takes way longer than the tests themselves.<br /><br />Joe's RN Melissa told us that the procedure worked and that a <span class="blsp-spelling-error" id="SPELLING_ERROR_8">CVC</span> team member would be up to take out the old line. She set up all the new <span class="blsp-spelling-error" id="SPELLING_ERROR_9">IV's</span> to the new line. Joe complained of a headache the last two days and they give him a half of a little pill that stops the headache in minutes. In the meantime I decided to order some Tex Mex dinner from <span class="blsp-spelling-error" id="SPELLING_ERROR_10">Pappasitos</span> that was only 2 miles away from the hospital. While I was gone to pick the food order up, the <span class="blsp-spelling-error" id="SPELLING_ERROR_11">CVC</span> team rook out Joe's old line which did not heart at all. They told Joe that he could order a pain pill since his left arm may be sore from the new entry point of the line.<br /><br />Dr. <span class="blsp-spelling-error" id="SPELLING_ERROR_12">Romaguera</span> made his rounds about 1PM today. He was pleased to see that Joe's Absolute <span class="blsp-spelling-error" id="SPELLING_ERROR_13">Neutrophil</span> count went from zero yesterday to 110 today. It needs to be at 500 before Joe can be released. Joe thanked him for calling in the Infectious Disease expert and that we were both impressed with how the doctors work together flawlessly at <span class="blsp-spelling-error" id="SPELLING_ERROR_14">MDACC</span>. Dr R stated that Joe's last scheduled chemotherapy for 5/19 will be postponed. He could not tell us for how long. He says we need to take each day as it comes. It is important that the infection be gone 100%. Joe will be ordered home care for antibiotic <span class="blsp-spelling-error" id="SPELLING_ERROR_15">IV's</span> that I would administer after he gets release. <span class="blsp-spelling-error" id="SPELLING_ERROR_16">MDA</span>, the Case Manager and Applied Health Care would work all of that out for us as they did previously when Joe need home IVs of <span class="blsp-spelling-error" id="SPELLING_ERROR_17">ERAXIS</span> which was for the believed fungal infection. I told Dr R to make sure Joe fully understands why there would be a postponement since he gets depressed when that happens. Joe understood and was fine with it.<br /><br />Joe decided to take them up on the pain pill. He was floating away to the twilight zone as the late news came on so I came back "home". It is hot and muggy in Houston where the city has not had rain for 57 days. There is an "exceptional" drought happening in Texas which is causing massive wildfires that are excelled by the strong winds.<br /><br />Some of Joe's other counts are as follows:<br />White Blood Cell Count .7 (low)<br />Red Blood Cell Count 4.85 (normal)<br /><span class="blsp-spelling-error" id="SPELLING_ERROR_18">Hemogloblin</span> 13.8 (slightly low)<br /><span class="blsp-spelling-error" id="SPELLING_ERROR_19">Hematocrit</span> 43 (normal)<br />Platelets 63 (low)<br /><br />With chemo the <span class="blsp-spelling-error" id="SPELLING_ERROR_20">WBC</span> and Platelets are expected to drop. The good news is that the platelets did not stop to an extreme low level as they have done in the past. The Red Blood, <span class="blsp-spelling-error" id="SPELLING_ERROR_21">Hemogloblin</span>, <span class="blsp-spelling-error" id="SPELLING_ERROR_22">Hematocrit</span> are excellent. Joe has not needed any transfusions of Red Blood Cells or Platelets with this round of chemo as he has had on each of the others in the past. We do have some positive things happening in spite of the serious infections.<br /><br />Joe is getting the full alphabet of antibiotics of which nearly all of them I never heard of before. I can not even pronounce their names correctly. What a blessing that there are so many antibiotics available.<br /><br />Good Night!Bonnie Evanshttp://www.blogger.com/profile/09493718799661073722noreply@blogger.com2tag:blogger.com,1999:blog-6516483828963196550.post-23154836687343531652011-05-10T00:16:00.003-04:002011-05-10T01:13:34.481-04:005/9/11 DANGER!!!!Joe was admitted into <span class="blsp-spelling-error" id="SPELLING_ERROR_0">MDACC</span> in the new high rise on the 15<span class="blsp-spelling-error" id="SPELLING_ERROR_1">th</span> floor at 1AM on Saturday morning if I have kept the days straight. It is truly hard to know what day things happen on when they are happening so fast and you are up over 24 hours straight. I needed to keep alert to assure Joe's treatment was on target and that his regular medication stayed on tract. It is not an easy thing to do when his medications are changing daily for one reason or the other. The second ER visit was a better experience and with better staff than the first ER visit that day.<br /><br />Joe's room number at <span class="blsp-spelling-error" id="SPELLING_ERROR_2">MDACC</span> is G1553 where the entire floor is the Lymphoma floor. The room is not quite a large as Joe's last room but still nice. It just has a weirder layout but it still has the two flat screen <span class="blsp-spelling-error" id="SPELLING_ERROR_3">TV's</span>, a sofa bed, desk with chair, a lounge rocking chair and a decent view of the Texas Medical Center. I ended up staying till about 3:00 AM since I had to get Joe settled in and answered all the status questions and go over his drug list. The nurse on duty was pleased that I gave her so much detail and made her job so much easier. They immediately placed sodium <span class="blsp-spelling-error" id="SPELLING_ERROR_4">cloride</span> IV as well as a powerful antibiotic called <span class="blsp-spelling-error" id="SPELLING_ERROR_5">vancomycin</span> which will be given once a day. All the blood tests were done once again from the arm as well as from the two <span class="blsp-spelling-error" id="SPELLING_ERROR_6">PICC</span> lines to determine what bug he has picked up. Joe's <span class="blsp-spelling-error" id="SPELLING_ERROR_7">neutrophil</span> count was a very tiny 30, 60 and 20 the first 3 times they tested the blood. His platelets continue to drop which is all a normal reaction after getting chemo.<br /><br />Sunday morning, Mother's Day, I was up at 9AM to take a shower then take Max to the dog park. I made it to the 11AM church service at St Philips Presbyterian Church on San Felipe Blvd. The children of the congregation gave the service including the sermon. It was delightful. After church I drove over to Randall's Supermarket to get a flower arrangement for my Chinese friend, <span class="blsp-spelling-error" id="SPELLING_ERROR_8">Yan</span>, who is working on her doctorate in Public Health at the Texas Medical Center. Her beautiful baby. Claire, is over in China staying with <span class="blsp-spelling-error" id="SPELLING_ERROR_9">Yan's</span> very loving Mom and Dad until <span class="blsp-spelling-error" id="SPELLING_ERROR_10">Yan</span> finishes her doctorate. She wants to go back to China and help her countryman. <span class="blsp-spelling-error" id="SPELLING_ERROR_11">Yan's</span> Mom stayed with <span class="blsp-spelling-error" id="SPELLING_ERROR_12">Yan</span> and Hang for about 9 months during her last months of pregnancy then until Christmas 2010 when all of them went home to China but little Claire stayed with Grandma and Grandpa. With both of us away from our family and children we decided to have Mother's Day Lunch together. It was just perfect since I needed a pleasurable break from the caregiver role. After we both exchanged gifts, we went to Champs to have lunch which we both enjoyed and caught up on family news. Each time I meet with <span class="blsp-spelling-error" id="SPELLING_ERROR_13">Yan</span>, she educates me more about Chinese culture. In China, mothers who just given birth, are expected to have complete bed rest for a full month after giving birth. The only thing she gets up for is to go the the bathroom. In China they do not have access to <span class="blsp-spelling-error" id="SPELLING_ERROR_14">Facebook</span> but they have their own Social Network.<br /><br />After lunch we both made our separate ways. At the hotel my oldest son, Keith, sent me an amazing arrangement of a dozen long stemmed white perfect roses with a lovely note. Michael, my youngest, sent me the most perfect Mother's Day card with a touching statement. Keith's girlfriend, Jennifer, sent me the best book ever called "Women, A Celebration of Strength." In the package was three red hats to honor all the different hats I wear in life. It was a very thoughtful kind gift.<br /><br />I did not make it to the hospital till about 3;30PM. Joe has <span class="blsp-spelling-error" id="SPELLING_ERROR_15">texted</span> me to pick him up a Roast Beef Sandwich and chips from Brown Bad Deli. Boy, he enjoyed eating it, big time. Dr <span class="blsp-spelling-error" id="SPELLING_ERROR_16">Romaguera</span> made his rounds late Sunday afternoon and we discussed Joe's situation. He stated that the initial cultures came back as gram positive cocci bacteria. Joe would have to be fever free for 48 hours and his <span class="blsp-spelling-error" id="SPELLING_ERROR_17">neutrophil</span> count must reach 500 (it was 30 at that time) before he could be released. It was the hospital's policy. Good! It is just the place Joe needs to be since if he were at the hotel, he would insist on going out for meals and doing something no matter how I would fuss. At the hospital he could be protected as much as possible. I stayed at the hospital until about 10:30 PM and headed back to the hotel to get some rest. I was so exhausted. It had all caught up with me. I was in bed at 11:30 PM and I did not wake up till 11:30 AM on Monday morning.<br /><br />The day starts with getting a shower than taking Max to the Dog Park. We left the park at about 1:30 PM. Joe <span class="blsp-spelling-error" id="SPELLING_ERROR_18">texted</span> me to pick up a Big Max Meal for him so I decided that I would eat something from <span class="blsp-spelling-error" id="SPELLING_ERROR_19">McDonalds</span> also. On the text he told me <span class="blsp-spelling-error" id="SPELLING_ERROR_20">Romaguera</span> had stopped by and increased the dosage of <span class="blsp-spelling-error" id="SPELLING_ERROR_21">Neupogin</span> to 480cc from 300cc since Joe's absolute <span class="blsp-spelling-error" id="SPELLING_ERROR_22">neutrophil</span> count (<span class="blsp-spelling-error" id="SPELLING_ERROR_23">ANC</span>) was now ZERO and his platelets were down to 64. Tuesday is Joe's expected nadir point but the <span class="blsp-spelling-error" id="SPELLING_ERROR_24">ANC</span> can not go negative but we expect the platelets to drop to its lowest point on Tuesday before it starts to rebound. There were a few times that we had to get medications straighten out since we knew better and they listened to us and had paged <span class="blsp-spelling-error" id="SPELLING_ERROR_25">Romaguera</span> for clarification. They also had Joe getting only 1000 kg of <span class="blsp-spelling-error" id="SPELLING_ERROR_26">Keppra</span> once a day when it was suppose to be 1500 units twice a day. So errors can happen even at <span class="blsp-spelling-error" id="SPELLING_ERROR_27">MDA</span>. One must be on guard all the time and insist on the <span class="blsp-spelling-error" id="SPELLING_ERROR_28">RN's</span> contacting the doctor to get it corrected.<br /><br />At 6:30PM Monday night, the Infectious Disease Expert, Dr <span class="blsp-spelling-error" id="SPELLING_ERROR_29">Ashita</span>, came to talk to Joe and me. He explained that Joe had a bacteria infection in his <span class="blsp-spelling-error" id="SPELLING_ERROR_30">PICC</span> (<span class="blsp-spelling-error" id="SPELLING_ERROR_31">CVC</span>) lines and that it was at such a high level of 1000 that he recommended that the line be removed and a new one place on the left arm. It will be done on Tuesday since it was now after hours. He also explained that the <span class="blsp-spelling-error" id="SPELLING_ERROR_32">AVELOX</span> (<span class="blsp-spelling-error" id="SPELLING_ERROR_33">moxofloxcin</span>) had to be stopped since it was diluting the effect of the seizure medicine, <span class="blsp-spelling-error" id="SPELLING_ERROR_34">Keppra</span>. They believed it was the reason he had the seizure Friday/<span class="blsp-spelling-error" id="SPELLING_ERROR_35">Saturdat</span> night. He stated he was replacing his current antibiotics with ones they use for TB patients but he assured us that Joe did not have TB. To keep all of the <span class="blsp-spelling-error" id="SPELLING_ERROR_36">meds</span> straight is so complex. Some <span class="blsp-spelling-error" id="SPELLING_ERROR_37">meds</span> will have to be thrown out and new ones and additional ones for the bacteria infection and <span class="blsp-spelling-corrected" id="SPELLING_ERROR_38">separate</span> ones for the rare <span class="blsp-spelling-error" id="SPELLING_ERROR_39">mycobacterium</span> <span class="blsp-spelling-error" id="SPELLING_ERROR_40">gordonae</span>. He said Joe was a very rare case with rare diseases and infections. A rare jewel my hubby is, has been proven medically.<br /><br />I left the hospital tonight at 10:30PM since Joe was ready to call it a night.<br /><br />I am so thankful to God for directing me to get Joe to the ER when he got the fever. I am thankful for the terrific care the <span class="blsp-spelling-error" id="SPELLING_ERROR_41">MDA</span> gives the patient. I honestly do not think that Joe would have gotten the care he needed at Emory since the doctors from the various departments do not work closely together with an urgency. I am thankful for Dr <span class="blsp-spelling-error" id="SPELLING_ERROR_42">Romaguera</span> calling in for the expert help from the Infectious Disease Department. I am thankful for all the prayers that Joe and I are getting from such a large Prayer Army.<br /><br />Good night. It's time to hit the hay.Bonnie Evanshttp://www.blogger.com/profile/09493718799661073722noreply@blogger.com1tag:blogger.com,1999:blog-6516483828963196550.post-19829558479913889062011-05-07T01:09:00.003-04:002011-05-07T01:17:05.832-04:005/6/11 Two Trips to the ER in the same dayOn Friday 2:15AM Joe had a seizure and I took him to the MDACC ER. They are not sure what caused it but the neurologist upped his seizure medicine by 50%. A bunch of tests were done. The ER doc thought maybe the diarrhea on Wednesday diluted the anti seizure medicine from his blood stream Or one of the antibiotics he takes for the weird germ in his lungs caused a seizure. His <span class="yshortcuts" id="lw_1304745269_0">blood tests</span> were good except for the extreme <span style="border-bottom: 2px dotted rgb(54, 99, 136); cursor: pointer;" class="yshortcuts" id="lw_1304745269_1">low white blood count</span> that is an effect from the chemo. Joe was released from the ER at 3:30pm.<br /><br />I gave Joe a shot of Neupogin at 8pm tonight. As we sat on the couch his hands and arms were hot to my touch so I took his temperature 3 times and it was 101.12F. Discharge instructions tell us to take him to the ER if his temp is 100.5 or more. Joe did not want to go since he was so tired but he knew I would not take no for an answer. We arrived at the ER and checked in at 10pm. The ER doctor was very thorough and said that Joe needs to be admitted to the hospital since infections are so dangerous for him. We are waiting for the admissions order and a room. All of this is fluid situation as I type this.<br /><br />It is good for him to get into a hospital room where it is quiet so he can sleep.<br /><br />Ciao,Bonnie Evanshttp://www.blogger.com/profile/09493718799661073722noreply@blogger.com2tag:blogger.com,1999:blog-6516483828963196550.post-39045167014156544262011-05-04T23:25:00.003-04:002011-05-05T01:23:52.158-04:005/5/11 Devil's GoneWhile Joe was receiving <span class="blsp-spelling-error" id="SPELLING_ERROR_0">Doxorubicin</span> (the Red Devil) at <span class="blsp-spelling-error" id="SPELLING_ERROR_1">MDACC</span> on Sunday evening, May 1, we were watching one of my favorite shows on Sunday nights called "Brothers and Sisters." The program was interrupted with a News Bulletin about 9:45 Pm CST and I grabbed Joe's thigh since it was highly unusual to see a bulletin come over at that hour on a Sunday night. When the news alert come on, I was happy to hear Osama bin Laden, the real live Devil, was dead. I felt kind of strange almost immediately as to why I was "happy" about another human being's death. I pray that God understands and forgives me for the gladness and relief. This person killed thousands of innocents on our America soil who were defenseless. This person has killed many of people of <span class="blsp-spelling-error" id="SPELLING_ERROR_2">Islam</span> faith also. This person had woman and children strapped with explosives to kill people in markets and public places. This person meets our maker, God, who will send him to Hell to meet the other mass murderers like Saddam, Hitler, Stalin, Mussolini, to name just a few. The Navy Seals, who should remain anonymous, are true heroes as well as the many men and woman who have died fighting evil and had and continue to do so. God bless the USA. May God protect us from evil. May God forgive us for we know not what we do nor sometimes what we should do. I agree with President Obama that the gruesome death photos of Osama should not be publish for maybe 100 years. The crazies would use the photos as a recruitment too. I do not care if they do not think he is dead.<br /><br />Joe's session of Part A of <span class="blsp-spelling-error" id="SPELLING_ERROR_3">HyperCVAD</span>-R has gone as well as expected. From reading Joe's medical records on line at <span class="blsp-spelling-error" id="SPELLING_ERROR_4">MDACC</span>, Dr. <span class="blsp-spelling-error" id="SPELLING_ERROR_5">Romaguera</span> stated that he was reducing the strength of the chemo by one level (whatever that means). Dr R wrote that the reason he was decreasing the dose was because Joe was already in complete remission and because Joe had the "serious" bout of infection. It is strange that I never thought what Joe had, was that serious. I now know that was the wrong thought. The reason I never thought of it as serious was because Joe never had a fever nor hospitalized for the infection.<br /><br />On Monday I came with my Brown Bag lunch of a Roast Beef Sandwich and some chips. Joe had asked for a bite of my sandwich so I pulled off a bite for him which he thoroughly enjoyed. Stephanie, Joe's RN for the day shift walked in to check on Joe. She asked Joe what he ate for lunch. He tells her he had a Roast Beef Sandwich. I asked Joe what Roast Beef Sandwich? He said the one from Brown Bad Deli. I stated, " You have got to be kidding me Joe. You had a bite and you call that lunch?" I started laughing like crazy. Joe stated OK, OK , go get me a Chick Fillet Sandwich and Fries from the Cafeteria. I replied "I am not going to trek 16 floors, walk halfway down the first floor and get you a meal that you are not going to eat." I did not go but I continued to laugh at his so called lunch! The nurses could hear me laughing all through the floor. When Stephanie left the room., Joe rolled his eyes at me and stated he just told her that, to keep her off his case on eating. Joe covers up what he really eats and especially what he drinks. The only way the medical staff would get close to the right information is from me. Well, that is what I thought until I opened my eyes and realized that Joe was not telling me the accurate facts either.<br /><br />Sometime I have failed to write about, is Joe's memory and thought process is so very poor. This is true both on short term and long term memory. He has confusion and his thought process is poor. Memory has never been a strong point with Joe but now it is really serious. I have got to talk to the doctor about it as well as his bouts with depression. I did bring it up to <span class="blsp-spelling-error" id="SPELLING_ERROR_6">Goley</span> Richardson and who did a good job in getting Joe to finally admit that he had it, Believe me that was a major milestone for Joe to admit it. <span class="blsp-spelling-error" id="SPELLING_ERROR_7">Goley</span> left it as we will keep tabs on it so I will bring it up again as well as the serious <span class="blsp-spelling-error" id="SPELLING_ERROR_8">chemobrain</span> issues. <span class="blsp-spelling-error" id="SPELLING_ERROR_9">MDACC</span> actually has a medical department that deals with <span class="blsp-spelling-error" id="SPELLING_ERROR_10">Chemobrain</span> thus it is a real issue.<br /><br />Joe's chemo finished up on Tuesday at 10:30AM. There was a discrepancy on the discharge orders on the dosage of <span class="blsp-spelling-error" id="SPELLING_ERROR_11">Neupogin</span> as well as the number of days Joe will take it. I got the dosage corrected and the discharge RN advised me when Joe goes for his followup on Friday that the doctor will make the decision on the <span class="blsp-spelling-error" id="SPELLING_ERROR_12">Neupogin</span> number of days. The reason I brought this to their attention is that Joe white blood counts jumps up extremely quickly and high after a few shots. I will bring it up again since I know better. <span class="blsp-spelling-error" id="SPELLING_ERROR_13">Caremark</span> Mail Order Specialty Pharmacy has to ship the <span class="blsp-spelling-error" id="SPELLING_ERROR_14">Neupogin</span> to us <span class="blsp-spelling-error" id="SPELLING_ERROR_15">in a</span> refrigerated box. I requested them only to send is 5 <span class="blsp-spelling-error" id="SPELLING_ERROR_16">pre</span>-filled syringes since I do not want to receive more than what was needed plus it is so expensive. Before we left the hospital, we had to stop by the second floor pharmacy to pick up additional drugs and a refill of <span class="blsp-spelling-error" id="SPELLING_ERROR_17">Keppra</span>. <span class="blsp-spelling-error" id="SPELLING_ERROR_18">Caremark</span> told the <span class="blsp-spelling-error" id="SPELLING_ERROR_19">MDACC</span> the the <span class="blsp-spelling-error" id="SPELLING_ERROR_20">Keppra</span> was a maintenance drug and that if we filed it there instead of mail order, it would cost us $548.00. I refused to pay that price so after I left the pharmacy I called <span class="blsp-spelling-error" id="SPELLING_ERROR_21">Caremark</span> who would mail the refill to the hotel where we are staying for a total of $18.00. Joe had to use the restroom again for a BM. I started to notice two things about Joe's bathroom habits. He was having <span class="blsp-spelling-error" id="SPELLING_ERROR_22">at</span> least 3 <span class="blsp-spelling-error" id="SPELLING_ERROR_23">BMs</span> a day when he normally has one. He could be having more than that since he has been been telling me the whole truth. When he urinates, it takes him a lot longer than it used to. I also asked Joe how his <span class="blsp-spelling-error" id="SPELLING_ERROR_24">BM's</span> were and he told me that they were normal and not runny. <span class="blsp-spelling-error" id="SPELLING_ERROR_25">Hmmmmm</span>. I decided that I would have to press him some more on that issue.<br /><br />Joe requested that we eat pizza for lunch at Luigi's in Midtown where they have a wonderful outside patio. I walked in and when I turned around Joe was not behind me. Some other guys were waiting, told me that he went to the restroom but then Joe finally walked through the door. He looked weird and I asked him if he was OK. He told me that he was tripped but he was fine. I asked him if he fell, but he said that he had just tripped. We enjoyed the medium cheese crispy crust tangy tomato sauce pizza. Joe also enjoyed a delicious side salad with raspberry vinaigrette which he said was fantastic. Joe insists on eating salads though we both know that it is not a good idea when his immune system is suppressed.<br /><br />When we went back to the car, I could see why Joe had "tripped". The pavement had a little ridge to it. It was in the car when he showed me that he cut his arm when he FELL! I was not a happy woman since he did not tell me the truth that he FELL. He claimed he told me that he tripped and that was the same thing. No, it is NOT.<br /><br />When we got back to the hotel, I cleaned his wound up very carefully and bandaged it. I explained to Joe that with his immune system being suppressed that cutting himself and not taking care of it right away could be quite dangerous. What am I going to do to save Joe from himself! It is wearing me out.<br /><br />One would have thought Joe would have been happy to be out of the hospital but I started to see the very first night back at the hotel that he was not talking and his lips were pursed thin. Uh Oh! I could see depression seeping back into his brain. Perhaps he was just tired after the hectic pace of checking out of the hospital since that has been an historical happening with Joe. I started to read my notes from the blog and found that he will be like this until probably next week. I remind him that he normally gets real tired and weak after a chemo treatment and that he should rest and rest some more and not push it. We discuss that he did great with this last chemo and it was the first time where he did not need blood or platelet transfusion. I remind him that he has only one more chemo week to go and then we should we home free. He goes to bed about 10:15 pm CST which I thought was good for him. The day Joe got out of the hospital felt like 2 days had passed. If it was tough on me, it was way tougher on Joe.<br /><br />Today, Wednesday, we both got up about 9:15AM. Our first stop was the dog park for Max to do his business. I promised Joe that it would take only 15 minutes at the most and it took less. Joe was hungry so we stopped at <span class="blsp-spelling-error" id="SPELLING_ERROR_26">Panera</span> Bread on the way "home". It was there that I brought up to Joe that I thought that he was in another depression state. He actually agreed with me! He basically stated that he thought that he would never have good energy ever again. He was afraid of getting another infection. He was worried about part B of the chemo since that one was so much harder on him and he was afraid that he would not make it through it. He was afraid of the cancer. He was afraid that he would not be able to travel again. I went through each of his fears with him but with depression knowing why does not make one feel any better. I asked him at <span class="blsp-spelling-error" id="SPELLING_ERROR_27">Panera</span> Bread whether he would like to go to Memorial Park with Max and just sit outside in the fresh air. Yes, he would. Perhaps open spaces would help. When he got out of the car, he headed right to a <span class="blsp-spelling-error" id="SPELLING_ERROR_28">Portajohn</span>. It was then he finally admitted to me that he had diarrhea. We stayed at the park maybe 15 minutes when Max ran back to the car and wanted to leave so we did. On the way back home I bought some <span class="blsp-spelling-error" id="SPELLING_ERROR_29">Immodium</span> and some other essentials. Later on today, Joe was glad that I had gotten the <span class="blsp-spelling-error" id="SPELLING_ERROR_30">Immodium</span> and he had to take it 3 times. If he still has the issue tomorrow, I will call <span class="blsp-spelling-error" id="SPELLING_ERROR_31">MDACC</span> for further help. I kept filling Joe's cup with liquid since it is so important for him to drink liquids not only because of the "runs" but some the the medication he takes, it states to drink plenty of liquids. It has been a huge challenge to get liquids into Joe since he keeps saying he is full and has not room for it. One of the last things we need is for him to become dehydrated. If someone has a magic answer, how I can get Joe to drink more liquids please let me know. If someone has a magic answer, how I can get Joe to tell me the truth. My ESP and women's intuition can only take me so far.<br /><br />Today Joe had an appointment to get his eyes examined at COSTCO so he could get new glasses. The ones he has are over four years old and scratched up badly. I was braced for the results of the eye exam since I was truly worried that Joe may be getting cataracts since so many people who have gone through chemo have gotten them; I have not told Joe that could happen since I did not want him to worry any more than he had to. It would make him even more depressed if the had them. Praise God that he did not have them. God probably knew that Joe could not handle any more that he already had on his shoulders.<br /><br />Before we left Costco, Joe had to use the bathroom again for a long period of time. I even <span class="blsp-spelling-error" id="SPELLING_ERROR_32">texted</span> him to see if he was OK since he would had not been pleased with me knocking on the men's restroom door to do a shout out to him. I was hard to remain patient.<br /><br />Tomorrow is a full day of rest with no appointments. Joe wants to get the laundry one and thankfully the hotel has good washroom facilities.<br /><br />God is with us and keeps carrying us though all the bumps along this journey.<br /><br />Ciao!Bonnie Evanshttp://www.blogger.com/profile/09493718799661073722noreply@blogger.com5tag:blogger.com,1999:blog-6516483828963196550.post-59198839537016576382011-04-30T00:06:00.003-04:002011-04-30T00:47:29.263-04:004/29/11 SMOOTH SAILING AT MDACCWe arrive in Houston on Tuesday, 4/26. The entire drive from Cape San <span class="blsp-spelling-error" id="SPELLING_ERROR_0">Blas</span> to Baton Rouge to Houston was very windy. I had commented that it was a bad omen for the Deep South since I knew that a storm was brewing. Little did I know that it would be so destructive and take so many lives as well as disrupting the lives of thousands. The pictures of the destruction is mind boggling to me. Two of our church members families had children attending college in Alabama with one living in a home off the University of Alabama campus in Tuscaloosa. You already know the force that hit that town. Mollie, who is to graduate in May, thankfully was saved by hiding in the bathroom of a house while the house was destroyed around her. We give thanks to God that she was spared but still saddened by those who lost their lives. God has something special in store for Mollie.<br /><br />We checked into the same Homestead Studio Suites in Houston near the Galleria where we have stayed for extended times twice before. The staff knows Joe, Max and me well so we were greeted with big welcoming smiles and they gave us the same studio suite again which takes care of our needs.<br /><br />On Wednesday Joe's appointments started at 2PM with a blood test then followed with an appointment with Dr. <span class="blsp-spelling-error" id="SPELLING_ERROR_1">Romaguera</span> in the Lymphoma department. We saw <span class="blsp-spelling-error" id="SPELLING_ERROR_2">Goley</span> first, followed by a "fellow" then Dr R who greeted us warmly. Joe's blood counts have been amazingly stable. The big negative has been his high <span class="blsp-spelling-error" id="SPELLING_ERROR_3">hematocrit</span> which was 56 that day. I agreed with Dr R that that chemo would drop it. What is great about this time around, it that Joe's platelets are in the normal range at 266. Even though Dr R says Joe is in remission, he still wants to Joe to complete the last two scheduled rounds of chemo to attempt to keep him in remission longer. I am for that.<br /><br />We had about an hour to waste while Joe's paperwork for chemo and admission was completed. We decided to eat at the Rotary House across the street from M D Anderson Cancer Center. It is similar to a Marriott Hotel so the services are quite good. Dinner was enjoyable in the nice, quiet surroundings.<br /><br />Joe was admitted to the new 22 story High Rise on the 16<span class="blsp-spelling-error" id="SPELLING_ERROR_4">th</span> floor of MD Anderson about 7PM. It is truly state of the art and very nice. It makes the hospital stay much easier for Joe with the wide hallways, colorful artwork, shiny hardwood floors, huge nicely decorated patient rooms, the best of up to date technology in and outside the hospital room. They also thought of family members and created two comfortable family rooms. One has a large flat screen TV, vending machines and wonderful views of Houston. The other family room is the quiet room. It is a very nice considerate touch for caregivers and their families. I am going to put a few pictures of the new High Rise of <span class="blsp-spelling-error" id="SPELLING_ERROR_5">MDACC</span>.<br /><br />I stay with Joe till about 10:30 PM then I go back to the hotel to take care of Max and sleep. Joe started with the monoclonal antibody, <span class="blsp-spelling-error" id="SPELLING_ERROR_6">Rituxan</span>, at 11PM and finished it at 4AM with no reactions. Joe says he slept right through it. At 6 AM Thursday the nurse started the IV of <span class="blsp-spelling-error" id="SPELLING_ERROR_7">Cyclophosamide</span> that is given for 3 hours every 12 hours for three days. To protect the kidneys <span class="blsp-spelling-error" id="SPELLING_ERROR_8">Mesna</span> is also given via IV continuously for three days. He is also given Saline Solution continuously to keep him hydrated.<br /><br />This same routine was also done on Friday. He is comfortable and has no adverse reactions to the chemo. I go back to the hospital each day by 2PM and stay till 10:30 PM. I try to sleep late, take a hot shower, take Max to the Dog Park since he is still scared of doing his business around the hotel with all the strange noises that he is not fond of.<br /><br />Joe's blood tests continue to amaze me as he undergoes chemo. Today his platelets were at 240 (normal range). Thankfully his <span class="blsp-spelling-error" id="SPELLING_ERROR_9">hematocrit</span> has dropped to a much safer level at 51.3. Joe's white blood count did not drop real low yet but it will. Joe is happy that I am there to keep him company and to keep track what is going on.<br /><br />I am thankful to God for taking care of Joe and making him comfortable as he receives chemo.<br /><br />Good night!<br />BonnieBonnie Evanshttp://www.blogger.com/profile/09493718799661073722noreply@blogger.com1tag:blogger.com,1999:blog-6516483828963196550.post-4734498745984553162011-04-24T20:40:00.003-04:002011-04-24T21:49:57.633-04:004/24/11 Cape San Blas EscapeTonight is our last night of our escape with our family at Cape San <span class="blsp-spelling-error" id="SPELLING_ERROR_0">Blas</span>. Every night I watched the sunset with a glass of wine in my hand. Every night Joe stayed in the condo. If he cracked one smile the entire time, I think I missed it. I did my best not to let him spoil these few days and most of the time I succeeded. I did bring it to his attention that he looked 100% miserable and that it looked like he wanted to croak any minute. Watching him like that is stressful to me and I wish he could pretend. The only things he does is eat, sleep and watch TV in this glorious pristine place. He has slept and ate well. There is no reason for his blues.<br /><br />Cape San <span class="blsp-spelling-error" id="SPELLING_ERROR_1">Blas</span> is very isolated. There are no high rises, tacky souvenir places, restaurants or amusements. The peninsula has plenty of beach houses that are for sale or rent. Many of them are painted in pastels and have colored tin roofs. There are places to park to get over the dunes to the sugar white sand beaches. Shell hunting is the amusement park and riding the ocean waves.. During in season, one can snorkel for bay scallops in the bay. The sea grass and sparkling waters beacon everyone. The weather has truly been perfect for the days that we have spent here. We enjoyed eating at various seaside shacks in the open air where the specialty was FRESH seafood. The oysters and shrimp were divine and they came in hundreds of different ways.<br /><br />Being with my sons and my two granddaughters made me a happy person in spite of Mr. Grim tight thin lip Joe. We enjoyed pulling off the road in the out of the way places to explore the beach and tidal pools. The tidal pools were interesting with lots of hermit crabs, live conch, horseshoe crabs, fish, snails, snakes and imagination. Lots of sweat was created exploring St Joseph's Peninsula State Park where if you bring it in, you must bring it out. The sand dunes were huge there and only a few people venture all the way to the end. Billions of shells are a reward for the exhausting trek.<br /><br />We also enjoyed BBQ burgers and drinking wine along laughing at each other. <span class="blsp-spelling-error" id="SPELLING_ERROR_2">Mike</span> rented a two movies from <span class="blsp-spelling-error" id="SPELLING_ERROR_3">Redbox </span>where one was terrible. We are watching the last one in a few minutes to ease down to rest. I am happy to saw that I got three amazing night's sleep.<br /><br />Tomorrow we head to Baton Rouge which is our rest point for the night on our way to Houston.<br /><br />God will lead us on the following leg of our journey with Mantle Cell Lymphoma. I sure hope He gives me more strength because I am getting really tired. I will do my best to take it one day at a time and one challenge at a time. It is the key.<br /><br />Good-bye Cape San <span class="blsp-spelling-error" id="SPELLING_ERROR_4">Blas</span>. You were a blessing to our family. I am not sure about Joe though. It is what it is.<br /><br />Ciao!Bonnie Evanshttp://www.blogger.com/profile/09493718799661073722noreply@blogger.com1tag:blogger.com,1999:blog-6516483828963196550.post-75453846295751847112011-04-20T00:45:00.002-04:002011-04-20T01:18:46.770-04:004/20/11 ON THE ROAD AGAINIt has been while since I updated my blog. The month at home in Atlanta has been excessively busy cramming everything in, that needs to be done in a short period of time before we head back to Houston for Joe's last two rounds of chemotherapy. I am happy to state that all our goals were accomplished over the last month with me catching upon a bounty of doctor and dental visits. There were some bumps in the road, as usual, that we just seem to handle somehow by tackling the task at hand. God has truly been our Co-Pilot.<br /><br />Joe's <span class="blsp-spelling-error" id="SPELLING_ERROR_0">hematocrit</span> remains high even after three <span class="blsp-spelling-error" id="SPELLING_ERROR_1">phlebotomies</span> thus far. His last <span class="blsp-spelling-error" id="SPELLING_ERROR_2">HCT</span> count was at 56.4 on Monday. Before we leave Atlanta on Wednesday, 4/20, Joe will have one more phlebotomy. I pray that the <span class="blsp-spelling-error" id="SPELLING_ERROR_3">HCT</span> will go down since there is a danger of a stroke if we do not get it down. Joe is doing okay with the usual complaint of feeling tired but honestly, I think he does amazingly well, especially with all he has been through and still going through. He still has the lingering cough and has a cold sore between his nostril and upper lip. He has been taking medication for it and also for shingles in case that is what it is. He had a minor excision done on his neck onTuesday by his local hematologist, Dr. <span class="blsp-spelling-error" id="SPELLING_ERROR_4">Brazas</span>, in Decatur, Georgia. Joe had a squamous growth on his neck. Joe has a history of basal and squamous cell growths for the last 7 years or maybe more. It is hard to keep track any more.<br /><br />Joe's hair is so handsome and cool to me. It is now about an inch long at the most and so soft as well as being a nice color gray. He will lose it all over again when he does the rounds of chemo but that is no big thing for a man. I love him no matter what he looks like. He is still too thin and has not gained any weight. He eats but he needs to eat more. I keep tabs on it.<br /><br />I have gained a ridiculous and embarrassing amount of weight where I have lost control over. You would think that I could control it but it is easier said than done over what has happened in the last six months. My nails are down to a quick and my cuticles looked like a raccoon has eaten them. The fingernail that I crushed in the car door fell off but that is no surprise since it was totally black. It is grown about half way. My doctor increased my dosage of <span class="blsp-spelling-error" id="SPELLING_ERROR_5">protonix</span> to control the nasty acid reflux. United Health Care "<span class="blsp-spelling-error" id="SPELLING_ERROR_6">PRO'S</span>" had requested my doc to have me only take one pill a day instead of two last year. Well, that did not work! My doctor also prescribed me some <span class="blsp-spelling-error" id="SPELLING_ERROR_7">Ambien</span> to help me go to sleep when I need it. She said it was better for me to take the <span class="blsp-spelling-error" id="SPELLING_ERROR_8">Ambien</span> rather than the <span class="blsp-spelling-error" id="SPELLING_ERROR_9">Xanax</span>. I had no idea that <span class="blsp-spelling-error" id="SPELLING_ERROR_10">Ambien</span> would be better for you rather than <span class="blsp-spelling-error" id="SPELLING_ERROR_11">Xanax</span>. One learns new things all the time.<br /><br />We are optimistic that the last two rounds of chemo will work and put Joe in a longer period of time of complete remission with of course, God's help. We need lots of His help along with giving us the strength and tenacity to fight on.<br /><br />Before we land in Houston, we are taking a detour to Florida for six highly anticipated days with our family at Cape San <span class="blsp-spelling-error" id="SPELLING_ERROR_12">Blas</span> on the beach. To be with each other over Easter is truly a blessing from God since we had it as a goal. It was so iffy that we could achieve that goal. It seems like forever since I have seen both my sons and my two granddaughters, Samantha and Emily. Keith is flying in from Memphis with his girlfriend, Jennifer Lindsey. I will take lots of photos and post them when I can.<br /><br />Happy Easter! Happy Passover! Happy Springtime! God is with you and your loved ones! Pray for a cure of all cancers. Lately I have had too many friends across the globe and at home, fighting cancer who mean so much to me. I know that everyone knows someone who has cancer or survived cancer or who loss their battle with it. I pray for peace and good health with plenty of love and hope for all.<br /><br />Thank you for reading my blog. I had no idea how much it meant to me until I started to do it.<br /><br />CIAO!Bonnie Evanshttp://www.blogger.com/profile/09493718799661073722noreply@blogger.com3tag:blogger.com,1999:blog-6516483828963196550.post-79916525956249001182011-04-13T23:36:00.003-04:002011-04-14T01:02:31.577-04:004/13/11 WHAT GOES UP HIGH, MUST COME OUT!Last night, Tuesday 4/12, as Joe and I watched the Braves game on TV, I could not but notice that his face was beet red like the worse sunburn you can imagine. He did not have a fever but was having the sweats all day long along with being so very tired. From Joe's extensive medical history, I knew that his <span class="blsp-spelling-error" id="SPELLING_ERROR_0">hematocrit</span> (<span class="blsp-spelling-error" id="SPELLING_ERROR_1">HCT</span>) had to be very, very high. It is exactly what Joe experienced when he had <span class="blsp-spelling-error" id="SPELLING_ERROR_2">Polycythemia</span> Vera (<span class="blsp-spelling-error" id="SPELLING_ERROR_3">PV</span>) where he would need to have regular <span class="blsp-spelling-error" id="SPELLING_ERROR_4">phlebotomies</span> for having too much blood. <span class="blsp-spelling-error" id="SPELLING_ERROR_5">Phlebotomies</span> are where the hematologist takes blood out and takes about 30 minutes much faster than getting blood. If you remember reading last week, his <span class="blsp-spelling-error" id="SPELLING_ERROR_6">Winship</span> at Emory clerk had messed up his appointment day to the day we were flying to Houston thus he did not get it done. At that time his <span class="blsp-spelling-error" id="SPELLING_ERROR_7">hematocrit</span> was 51, high but not real excessive. There was no time to get a <span class="blsp-spelling-error" id="SPELLING_ERROR_8">phleb</span> at <span class="blsp-spelling-error" id="SPELLING_ERROR_9">MDACC</span> since it was a day filled of scheduled tests and doctor appointments.<br /><br />The appointment time for the blood test to see where Joe's blood levels was at 7:30 AM so we got up at an early 6AM. I got 5 hours sleep but Joe got a decent night's sleep. His face was still beet red but no fever and his blood pressure and heat beat was normal, Unfortunately Joe lost weight again, he was 165.1 with his shoes on so more milk shakes and ice cream for Mr. Joe. Joe was called back for the blood test in a timely manner. Unfortunately, this is not normal at <span class="blsp-spelling-error" id="SPELLING_ERROR_10">Winship</span> at Emory. I was getting antsy waiting for Joe to be called into the Infusion Ward but the appointment time for that was 8:30 AM and he was called at 8:37 which is darn good for them. He was assigned the last seat in Row B where there are 8 hospital chairs where no one else was yet assigned but by the time we left, every chair was full. Joe got a blanket and made himself comfortable so he could fall asleep. I started to bug the nurses' station for a copy of his blood test so I could make my 9:05 appointment with my orthopedic sports medicine doctor, Dr. Mason. Eunice, Joe's assigned nurse,verbally told me his <span class="blsp-spelling-error" id="SPELLING_ERROR_11">HCT</span> was an astonishing 58.2. I wanted to see it in writing and within a few minutes later, I had it. Wow, it was true and it had Joe's name on the top. No wonder, his face was so red. It explained the tiredness and the sweats on and off all day long. I stated to Eunice that it appeared to me that Joe would probably need another <span class="blsp-spelling-error" id="SPELLING_ERROR_12">phleb</span> on Friday and Monday to get the <span class="blsp-spelling-error" id="SPELLING_ERROR_13">HCT</span> down to a safe level. The concern with a high <span class="blsp-spelling-error" id="SPELLING_ERROR_14">HCT</span> is clotting and strokes which of course is life threatening. I left <span class="blsp-spelling-error" id="SPELLING_ERROR_15">Winship</span> and drove 10 minutes over to the Emory Clinic Orthopedic and Spine Center located in Executive Park, Remarkably I arrived on time. My nurse walked me through the maze of offices and gave me my stylish cover. When she came back in the room, she had the monstrous large needle in her hand. I teasingly told her that she should not have let me see it since I could freak out but I did not. The sonogram machine was already in the room so Dr. Mason could get the cortisone shot right into the shoulder joint. The only thing they give you is some cold spray to supposedly help with the pain which by the way tastes awful since some got into my mouth. You can keep the jokes away my friends and family! <span class="blsp-spelling-error" id="SPELLING_ERROR_16">LOL</span>. I did OKAY though I did slightly jerked a few times but Mason said I did good. I figure with what Joe has to go through, I could handle it for 10 minutes or so. I squeezed my eyes shut and gritted my teeth as it went in. Mason did a good job. He gave me a prescription for some <span class="blsp-spelling-error" id="SPELLING_ERROR_17">meds</span> as well as Physical Therapy which I will do while I am in Houston. Heck if Houston <span class="blsp-spelling-error" id="SPELLING_ERROR_18">TIRR</span> Medical Center is good enough for Representative Gabby then it is good enough for me. It is located directly behind <span class="blsp-spelling-error" id="SPELLING_ERROR_19">MDACC</span> - very convenient, huh?<br /><br />I was headed back to Joe by 9:50 AM. I called him and he stated that the <span class="blsp-spelling-error" id="SPELLING_ERROR_20">phleb</span> was done and they were giving him an IV of saline which is a good idea to do since one can get faint after blood is removed which happened to Joe only one time over a 12 year period. Drinking lots of liquids , such as water or Gatorade,beforehand is a key to prevent dizziness or fainting, While I was getting my shoulder tended to, Joe told me that Physician Assistant, the lovely Jessica Neely, came to see him prior to the <span class="blsp-spelling-error" id="SPELLING_ERROR_21">phleb</span>. Joe said that I should have seen the expression on her face when she saw how red he was. She asked him why he was so red and Joe told her it was because he had too much blood. As as I driving back to Joe, she came back down to see Joe after the <span class="blsp-spelling-error" id="SPELLING_ERROR_22">phleb</span> and spoke to me about maybe Monday or Tuesday would be best for Joe's next <span class="blsp-spelling-error" id="SPELLING_ERROR_23">phleb</span> but she would consult Dr. <span class="blsp-spelling-error" id="SPELLING_ERROR_24">Winton</span> about it since I stated I thought it should be Friday and Monday. Jessica thought that might be too soon. I was back with Joe at 10:10 AM as he was getting his IV of Saline. His face was already 50% less red. He stated he already felt much better that he had more energy already. Jessica came back while we were waiting and stated that Dr <span class="blsp-spelling-error" id="SPELLING_ERROR_25">Winton</span> said that Joe should come back in on Friday and Monday for a blood test and a scheduled <span class="blsp-spelling-error" id="SPELLING_ERROR_26">phleb</span>. Well, how about that! <span class="blsp-spelling-error" id="SPELLING_ERROR_27">Winton</span> tried to get down to see Joe but he was called into a meeting and that he would stop by and see Joe on Friday once they page him. <span class="blsp-spelling-error" id="SPELLING_ERROR_28">Winton</span> told Jessica that when the <span class="blsp-spelling-error" id="SPELLING_ERROR_29">HCT</span> is high like Joe's that one doe snot have to wait to have another <span class="blsp-spelling-error" id="SPELLING_ERROR_30">phleb</span>. We walked out of <span class="blsp-spelling-error" id="SPELLING_ERROR_31">Winship</span> at Emory at 11:20. Joe says that he was starving, Yeah! His appetite was <span class="blsp-spelling-error" id="SPELLING_ERROR_32">BACKKKKKKK</span>! I could tell he felt better since his posture was more up and he walked more firmly and quicker. His optimism was also back. Praise the Lord. We had lunch at <span class="blsp-spelling-error" id="SPELLING_ERROR_33">Steak'N'Steak</span> at the corner of <span class="blsp-spelling-error" id="SPELLING_ERROR_34">LaVista</span> and North Druid Hills where we beat the lunch crowd. Joe ate his entire lunch after I edged him on to eat the last 5 fries on his plate since he was ever so close to finishing it all. Good job, Mr. Joe!<br /><br />As we drove up Musket hill to our home that we could not help notice that the tree and huge stump was still in the front yard. The tree man failed to show up again. Joe hopped in his shiny red Ford F150 pick up to talk to the tree company that was doing tree work for someone on <span class="blsp-spelling-error" id="SPELLING_ERROR_35">Gunstock</span>. They told Joe that they would be finished in 30 minutes and would come by our home to take a look at what we needed and give us a price. Sure enough, they were at our home in 30 minutes and offered us a price of only $$200 compared to $600 that our normal tree guy was quoting us. I admit that I was my skeptical self and questioned Joe's wisdom of hiring a person off the street to do the work. The crew chief was a muscular <span class="blsp-spelling-corrected" id="SPELLING_ERROR_36">tattooed</span> woman with 4 Latinos. She sensed my concern and promised that she would not mess up our yard or plants. I went into the house and decided that I could not bear to watch since that would add more stress that I did not need. The tree and huge stump is gone. I lost one dried out <span class="blsp-spelling-corrected" id="SPELLING_ERROR_37">hydrangea</span> that has not flowered since I transplanted it two years ago. I was NOT happy to see that my new nicely grass yard that I worked so hard on growing was pulled up for about 10 feet. I grumbled loudly to Joe. He promised to reseed those areas as well as where the <span class="blsp-spelling-error" id="SPELLING_ERROR_38">DeKalb</span> County Water department fixed the water main to our home several days ago, They did see it some but I am not sure it was enough to satisfy me. Joe stated that since we saved $400 that I could buy some new <span class="blsp-spelling-corrected" id="SPELLING_ERROR_39">hydrangeas</span> and the pink dogwood tree that I always wanted. We went shopping for the pink dogwood at Pikes, Home Depot's two locations nearby and <span class="blsp-spelling-error" id="SPELLING_ERROR_40">Lowe's</span>. I called another Pikes Nursery over on <span class="blsp-spelling-error" id="SPELLING_ERROR_41">Toco</span> Hills who stated that he had five pick dogwoods priced at $125 but were 6 ft tall and wrapped in burlap. Great! But thrifty me decided to hit Home Depot and <span class="blsp-spelling-error" id="SPELLING_ERROR_43">Lowe's</span> on Hwy 78 had about 8 pink dogwoods from 3 ft tall to 5 feet tall for only $25. I actually picked the smaller one since I liked how the branches were growing on it plus it looked healthier and the pink flowers looked perfect. I also purchased some panting soil for trees and bushes. Joe stayed in the truck as I ran into each place since I try not to wear him out. He knows that I am focused fast shopper so he does not ever mind waiting for me. Good guy!<br /><br />When we got home, Joe worked in the yard blowing our long driveway and walkways as well as our deck, He was definitely feeling better and he did not even take a nap today. Hey, a little blood letting worked its magic. He looked even better as the day progressed and ate about 90% of his dinner at <span class="blsp-spelling-error" id="SPELLING_ERROR_44">Applebee's</span>. I did serve him two scoops of Strawberry Ice Cream as he watched the Braves lose to the Fish (Marlins). When he came into the house, I went outside to plant the dogwood where the 100 foot hardwood used to be. I dug a two foot hole, mixed the soil mix with the moist Georgia Red Clay, refilled the hole, made a moat around the perimeter to hold water. I need to get some mulch tomorrow to help keep the ground from drying out. I was a dirty gal when I finished doing the task. I came into the house and went right into the Laundry room to strip down to my birthday suit and put the muddy clothes into the wash. I headed upstairs to take a hot shower that felt heavenly and I smelled and looked a heck of a bunch better. Once I got back downstairs Joe was hungry and ready to go to dinner at <span class="blsp-spelling-error" id="SPELLING_ERROR_45">Applebee's</span> on Hwy 78 since we could watch the Braves game as we ate. I had one of their Weight Watcher's 550 calorie meal of <span class="blsp-spelling-error" id="SPELLING_ERROR_46">Teriyaki</span> <span class="blsp-spelling-error" id="SPELLING_ERROR_47">Shrimp</span> Pasta which was quite tasty so I will have that again as well as highly recommending it. I had read in the paper that for the last two months that the biggest selling meals have been <span class="blsp-spelling-error" id="SPELLING_ERROR_48">Applebee's</span> 550 Weight Watcher's meals. They are pretty darn good. Joe had the <span class="blsp-spelling-error" id="SPELLING_ERROR_49">Asagio</span> Peppercorn Steak and enjoyed it very much.<br /><br />Joe headed to bed at 11:30 PM and announced to me that he had no sweats all day long! He was sure happy about that. The <span class="blsp-spelling-error" id="SPELLING_ERROR_50">Phleb</span> will do that to someone who has <span class="blsp-spelling-error" id="SPELLING_ERROR_51">Polycythemia</span> Vera.<br /><br />I spoke to my friend, Nancy Smith who is Ray Buff's very close friend tonight. She told me that the surgeon worked on Buff for 11 hours very carefully removed veins and an aorta from the pancreas tumor.His spleen was also removed. The doc told the family that he believes he got all of the tumor. He will be in Intensive Care for 2 days then in a regular room for 8 days if all goes well. Please continue to pray for my long time friend, Ray Buff, his good friend and his family.<br /><br />Tomorrow I have my "Welcome to Medicare Physical" with my wonderful caring internist, Dr. <span class="blsp-spelling-error" id="SPELLING_ERROR_52">Shabah</span> Shah at Emory Clinic across the street from the CDC. I can't imagine it being very thorough but Medicare encourages it so I will get it done.<br /><br />I am tired so good night my blog followers who I treasured. You sure all know how to boost my spirit and keep me motivated at continuing the blog.<br /><br />May the peace of the Lord be with you, your family, our country and physicians!<br /><br />Ciao!Bonnie Evanshttp://www.blogger.com/profile/09493718799661073722noreply@blogger.com0