Today my dear friend, Cyndy, lost her loving and loved partner, Sam Morreale. 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.
Whenever a life is ended from a Myeloproliferative 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.
Our Lord God, grant Sam your eternal grace and love. Thank you Lord for letting us know Sam and Cyndy.
Good-bye Sam!
MONICA SMITH AT MDACC 9/14/11
MONICA SMITH AT MDACC 9/14/11
Wednesday, December 28, 2011
Sunday, December 25, 2011
Coping with New Reality 12/25/2011
Hi All!
It has been awhile since I did an update. For the last couple months I have suffered from Caregivers 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.
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. Romaguera is pleased with Joe's blood counts but still wants him to continue infusions of IVIG on a 4 to 6 week schedule thus his next one will be the first week of January. Dr. Verstosvek is also satisfied with Joe's blood counts on the basis of his Myelofibrosis. 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 Mohs 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.
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.
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.
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.
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.
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.
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.
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.
Where has emotional love gone? Why does it have to be a one way street all the time?
Bah Humbug!
It has been awhile since I did an update. For the last couple months I have suffered from Caregivers 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.
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. Romaguera is pleased with Joe's blood counts but still wants him to continue infusions of IVIG on a 4 to 6 week schedule thus his next one will be the first week of January. Dr. Verstosvek is also satisfied with Joe's blood counts on the basis of his Myelofibrosis. 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 Mohs 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.
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.
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.
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.
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.
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.
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.
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.
Where has emotional love gone? Why does it have to be a one way street all the time?
Bah Humbug!
Tuesday, October 4, 2011
10/4/11 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 Immunoglobulin at Winship at Emory on Monday that took a half a day for a stupid reason. The Infusion Department never got the doctor orders from Dr Winton 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 Winton 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 Immunoglobulin infusion at the end of October. I must give thanks to my mentor at Bank of America, Leslie Kozicki, who taught me the art of diplomacy. I was a slow learner but it finally caught on into my brain.
The Infusion of the Immunoglobulin was done slowly at first and would build up. It is similar to how the first dose of Rituxan was administered at MDACC. The reason for that is to assure no adverse reactions. Before the Infusion the RN administered a cocktail of Tylenol and benedryl 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 Winship I stopped by Panera 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 prescrptions for his ongoing cough from the acute sinusitis. He has finished taking Avelox 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.
Joe did not get the boost of feeling better after the Immunoglobulin Infusion as some patients mentioned. In fact he felt not as good until this evening which is only a day after the treatment.
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 Caribbean. 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 Lauderdale and has several days at sea that Joe loves. The new islands we will visit will be Antigua, Barbados, St Kitts and St Lucia. I always wanted to go to St Kitts 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.
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 several years ago and if you stayed in Kingston, you could not give blood. Joe and I had flown into Montego Bay and spent a week on Negril 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.
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 MDACC in Houston. No surprise that Dr Romaguera 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 Romaguera 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.
Ciao!
Bonnie
The Infusion of the Immunoglobulin was done slowly at first and would build up. It is similar to how the first dose of Rituxan was administered at MDACC. The reason for that is to assure no adverse reactions. Before the Infusion the RN administered a cocktail of Tylenol and benedryl 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 Winship I stopped by Panera 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 prescrptions for his ongoing cough from the acute sinusitis. He has finished taking Avelox 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.
Joe did not get the boost of feeling better after the Immunoglobulin Infusion as some patients mentioned. In fact he felt not as good until this evening which is only a day after the treatment.
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 Caribbean. 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 Lauderdale and has several days at sea that Joe loves. The new islands we will visit will be Antigua, Barbados, St Kitts and St Lucia. I always wanted to go to St Kitts 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.
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 several years ago and if you stayed in Kingston, you could not give blood. Joe and I had flown into Montego Bay and spent a week on Negril 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.
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 MDACC in Houston. No surprise that Dr Romaguera 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 Romaguera 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.
Ciao!
Bonnie
Monday, September 19, 2011
9/19/11 Blogging AgaIn
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 (Ruxolitinib, RUXO for short in future references) for Myelofibrosis.
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.
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.
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.
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.
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.
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.
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.
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.
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.
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.
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.
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.
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.
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!
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.
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.
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.
Chest PA and Lateral X-Ray 9/14/11
Comparison made with the prior exam of 6/8/2011
The lungs remain clear bilaterally, Minimal subsegmental atelectasis noted in the right base, unchanged. The lungs remain otherwise unremarlable. No new focal abnormality.
No evidence of metasttases or acute infiltrates. Unchanged,
CT Abdomen and Pelvis 9/14/2011
Retaging workup.
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.
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.
The rest of the intraabdominal solid organs remain otherwise unremarkable. No hydronephrosis. There are small cysts in the kidneys.
There is no definite lymphadenapathy or peritoneal disease in either abdomen or pelvis. Minimal periportal nodes are unspecific.
Impression: Persistent splenomegaly and portal hypertension possibly some decrease in overall volume, if any change. No new focal adnormality or lymphadenopathy.
CT CHEST: 9/14/2011
CT chest with intravenous contrast with comparison made with exam ion 6/8/2011.
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.
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.
Impression: No evidence of metastases and recurrence.
CT SOFT TISSUE NECK WITH CONTRAST 9/14/2011
Compared CT neck 8/6/11
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.
IMPRESSION: No enlarged lymph nodes within the neck.
Marked progression of sinusitis, consistent with an acute pansinusitis. There are no CT findings to suggest fungal sinusitis.
IMMUNOGLOBULIN Accession 9/15/2011
IMMUNOGLOBULIN IgG 240L MG/DL (700-1600)
IMMUNOGLOBULIN IgA 10L MG/DL (70-400)
IMMUNOGLOBULIN IgM 31L MG/DL (400-230)
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.
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.
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.
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.
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.
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.
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.
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.
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.
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.
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.
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.
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.
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!
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.
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.
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.
Chest PA and Lateral X-Ray 9/14/11
Comparison made with the prior exam of 6/8/2011
The lungs remain clear bilaterally, Minimal subsegmental atelectasis noted in the right base, unchanged. The lungs remain otherwise unremarlable. No new focal abnormality.
No evidence of metasttases or acute infiltrates. Unchanged,
CT Abdomen and Pelvis 9/14/2011
Retaging workup.
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.
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.
The rest of the intraabdominal solid organs remain otherwise unremarkable. No hydronephrosis. There are small cysts in the kidneys.
There is no definite lymphadenapathy or peritoneal disease in either abdomen or pelvis. Minimal periportal nodes are unspecific.
Impression: Persistent splenomegaly and portal hypertension possibly some decrease in overall volume, if any change. No new focal adnormality or lymphadenopathy.
CT CHEST: 9/14/2011
CT chest with intravenous contrast with comparison made with exam ion 6/8/2011.
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.
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.
Impression: No evidence of metastases and recurrence.
CT SOFT TISSUE NECK WITH CONTRAST 9/14/2011
Compared CT neck 8/6/11
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.
IMPRESSION: No enlarged lymph nodes within the neck.
Marked progression of sinusitis, consistent with an acute pansinusitis. There are no CT findings to suggest fungal sinusitis.
IMMUNOGLOBULIN Accession 9/15/2011
IMMUNOGLOBULIN IgG 240L MG/DL (700-1600)
IMMUNOGLOBULIN IgA 10L MG/DL (70-400)
IMMUNOGLOBULIN IgM 31L MG/DL (400-230)
Monday, August 8, 2011
8/8/11 GOAL REACHED
The past month has been concentrated on getting Joe's hematocrit to a safe level. When Joe hah a routine visit with Dr. Winton at Winship at Emory on July 25, Joe's hematocrit was at 54.7 which is considered high. Dr. Winton 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 HyperCVAD has jumped started Joe's bone marrow where it is producing blood again. The trial drug, Ruxolitimib (INCYTE), for his Myelofibrosis 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 phlebotomies before the hematocrit got to below 45. The danger of having a high hematocrit level is the high risk of a stroke or a heart attack. Since July 31, Joe's was out of danger.
During Joe's last physician visit to Winship 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.
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.
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.
Here are today's blood results:
White Blood Count...(4-11) actual 4.5 NORMAL
Red Blood Count.......(4.5-6) actual 5.03 NORMAL
Hemoglobin...............(14-18) actual 14.8 NORMAL
Hematocrit................(40-54) actual 47.3 NORMAL
Platelets.....................(140-440) actual 255 NORMAL
Astounding, isn't it?
Joe and I will be celebrating at Breezes Negril 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 Montego 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 Negril 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 Pina Colada with the pink umbrella to my beach chair. I will be blogging when I have a chance and if I get motivated.
Bon Voyage my blog readers!
During Joe's last physician visit to Winship 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.
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.
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.
Here are today's blood results:
White Blood Count...(4-11) actual 4.5 NORMAL
Red Blood Count.......(4.5-6) actual 5.03 NORMAL
Hemoglobin...............(14-18) actual 14.8 NORMAL
Hematocrit................(40-54) actual 47.3 NORMAL
Platelets.....................(140-440) actual 255 NORMAL
Astounding, isn't it?
Joe and I will be celebrating at Breezes Negril 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 Montego 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 Negril 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 Pina Colada with the pink umbrella to my beach chair. I will be blogging when I have a chance and if I get motivated.
Bon Voyage my blog readers!
Sunday, July 17, 2011
7/17/11 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
Dr Winton at Emory advised us that he thought it was a good idea for Joe to get back on INCYTE 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 Myelofibrosis 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 myelofibrosis 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 diarrehha was the antibiotics. Dr. Winton 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 Winton state it.
On Saturday night, July 3, we drove up to Alpharetta to have dinner with Joe's sister, Donna, and her husband, Rick, at Pappadreaux off of Mansell 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 4th 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 Rican Tilapia Layfayette which was fabulous with grilled tilapia topped with fresh tasty lump crabmeat, shrimp, tomatoes, capers and basil in buerre blanc 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.
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.
On July 4th 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 Nalley 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.
Thursday the 7th 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.
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 6th 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.
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.
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
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.
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 Beca Di Beppo. Judy and Gilbert are some of my classmates who graduated from Hauppauge High School in 1963. Judy greeted us with a hug and a Puerto Rican 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 Caesar 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.
The alarm went off at 6AM since we planned to see my niece, Jaclyn Garris, run the Triathlon in South Ponte Vedra 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 DeCaprio. Joe and I wanted to show our support and gratitude to her fantastic efforts. We had gotten to scrumptious ritzy Ponte Vedra 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 Ponte Vedra 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.
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 7th 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.
We arrive at Jennifer's townhome 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 WII 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 DS 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 birthday wish of a new Ibanez 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 Winbox 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.
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.
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 immodium to stop the runs . 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 reflux and my stomach was churning even more. I took some more tums and immodium but ugh it did not work. I was on the potty when I started to sweat like Niagara 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.
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. Romaguera 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 research/teaching day so he would try to see Joe when he saw Dr. Torres. Dr Romaguera 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. Romaguera 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 neutrophils.
The most important appointment was with Dr. Verstovsek in the Leukemia Department which was not till 3PM. Dr V was Joe's Myelofibrosis doctor at M D Anderson Cancer Center before Joe got diagnosed with Mantle Cell Lymphoma. Joe had been part of the INCYTE trial drug from 9/12/2008 till September 2011 when he had to come off the INCYTE to be able to receive chemotherapy for the new cancer. Joe was so worried at that time this past September about coming off the INCYTE since it improved the symptoms of the Myelofibrosis 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.
Joe's blood counts on 7/12/11 were as follows with the normal ranges and actual amount.
WBC (4-11) 4.30
RBC (4.5-6) 5.50
HGB (14-18) 15.70
HCT (40-54) 50.70
PLT (140-440) 79.0
ANC (1.7-8.3) 2.36
Oh my, the date is now 7/23 and I just can't get motivated to update the blog.
Joe's cough is substantially better. 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.
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.
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.
Ciao!
Dr Winton at Emory advised us that he thought it was a good idea for Joe to get back on INCYTE 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 Myelofibrosis 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 myelofibrosis 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 diarrehha was the antibiotics. Dr. Winton 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 Winton state it.
On Saturday night, July 3, we drove up to Alpharetta to have dinner with Joe's sister, Donna, and her husband, Rick, at Pappadreaux off of Mansell 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 4th 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 Rican Tilapia Layfayette which was fabulous with grilled tilapia topped with fresh tasty lump crabmeat, shrimp, tomatoes, capers and basil in buerre blanc 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.
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.
On July 4th 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 Nalley 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.
Thursday the 7th 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.
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 6th 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.
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.
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
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.
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 Beca Di Beppo. Judy and Gilbert are some of my classmates who graduated from Hauppauge High School in 1963. Judy greeted us with a hug and a Puerto Rican 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 Caesar 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.
The alarm went off at 6AM since we planned to see my niece, Jaclyn Garris, run the Triathlon in South Ponte Vedra 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 DeCaprio. Joe and I wanted to show our support and gratitude to her fantastic efforts. We had gotten to scrumptious ritzy Ponte Vedra 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 Ponte Vedra 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.
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 7th 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.
We arrive at Jennifer's townhome 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 WII 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 DS 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 birthday wish of a new Ibanez 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 Winbox 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.
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.
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 immodium to stop the runs . 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 reflux and my stomach was churning even more. I took some more tums and immodium but ugh it did not work. I was on the potty when I started to sweat like Niagara 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.
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. Romaguera 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 research/teaching day so he would try to see Joe when he saw Dr. Torres. Dr Romaguera 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. Romaguera 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 neutrophils.
The most important appointment was with Dr. Verstovsek in the Leukemia Department which was not till 3PM. Dr V was Joe's Myelofibrosis doctor at M D Anderson Cancer Center before Joe got diagnosed with Mantle Cell Lymphoma. Joe had been part of the INCYTE trial drug from 9/12/2008 till September 2011 when he had to come off the INCYTE to be able to receive chemotherapy for the new cancer. Joe was so worried at that time this past September about coming off the INCYTE since it improved the symptoms of the Myelofibrosis 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.
Joe's blood counts on 7/12/11 were as follows with the normal ranges and actual amount.
WBC (4-11) 4.30
RBC (4.5-6) 5.50
HGB (14-18) 15.70
HCT (40-54) 50.70
PLT (140-440) 79.0
ANC (1.7-8.3) 2.36
Oh my, the date is now 7/23 and I just can't get motivated to update the blog.
Joe's cough is substantially better. 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.
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.
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.
Ciao!
Wednesday, June 29, 2011
6/29/11 SOME ROUTINE
Joe 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.
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.
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.
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.
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.
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.
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.
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.
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.
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.
Good night since I am really tired tonight.
Bonnie
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.
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.
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.
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.
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.
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.
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.
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.
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.
Good night since I am really tired tonight.
Bonnie
Thursday, June 23, 2011
6/23/11 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.
Let me go back to that last jammed packed appointment week at MDACC. 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, XRays, CT Scans, PET Scans, Bone Marrow Biopsy and other stuff that I have forgotten. There was appointments with opthamologist, neurologists, radiologist, infectious disease, pulmingologist 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 Keppra 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?
Next stop was the crazy opthamologist 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 pulminology 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 pulminologist 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 pulminologist. 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 Caruthers 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?!!!
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 Bisonnett Street not far from MDACC 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.
Joe and I were both asleep by 10PM that night since we had to get early again for his last round of appointments on Thursday which started with a blood test then a CT Scan then we would get to see Dr Oki 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 Oki since Dr Romaguera was out of town for several big medical conferences. It was a bit anticlimactic. It was Oki 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 restaged in three months. When he opened the door, there was our dear Goley Richardson, Dr Romaguera's 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 Oki 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 Romaguera. It was quite an understatement. We left the Lymphoma department with joy and relief. We headed to the Infusion Department to have Joe's PICC/CVC 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!
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 5:3oPM. 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.
Saturday we drove about 7.5 hours before we stopped for the night in Biloxi. 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.
We got home on Sunday evening just as the Bennetts 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.
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 Bally's Fitness and walking for a half hour in our hilly neighborhood.
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.
This pass Sunday it was wonderful being able to attend church service at Eastminster 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.
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.
Joe still has Myelofibrosis per his last Bone Marrow Biopsy. It is graded as MF-2 per the European grading standards where MF-3 is the worse stage. Dr Verstovsek of the Leukemia Department wants to put Joe back on the INCYTE 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 MDACC. Next week we will consult with Dr Winton of Winship Cancer Institute at Emory about the Myelofibrosis 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 MF. I bought him some Benedryl to see if that relieves the itching since I read that it could help on the MPN 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.
The medical community changed the name of MPD (the D is for Disorders) and MPN (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.
I want to thank my blog and Facebook readers who donated to my niece, Jaclyn Garris, efforts to raise funds for the Leukemia and Lymphoma Society (LLS) 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.
Faith. Hope and Charity! It is what keeps us going.
Blessings and thanks to all,
Let me go back to that last jammed packed appointment week at MDACC. 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, XRays, CT Scans, PET Scans, Bone Marrow Biopsy and other stuff that I have forgotten. There was appointments with opthamologist, neurologists, radiologist, infectious disease, pulmingologist 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 Keppra 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?
Next stop was the crazy opthamologist 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 pulminology 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 pulminologist 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 pulminologist. 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 Caruthers 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?!!!
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 Bisonnett Street not far from MDACC 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.
Joe and I were both asleep by 10PM that night since we had to get early again for his last round of appointments on Thursday which started with a blood test then a CT Scan then we would get to see Dr Oki 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 Oki since Dr Romaguera was out of town for several big medical conferences. It was a bit anticlimactic. It was Oki 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 restaged in three months. When he opened the door, there was our dear Goley Richardson, Dr Romaguera's 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 Oki 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 Romaguera. It was quite an understatement. We left the Lymphoma department with joy and relief. We headed to the Infusion Department to have Joe's PICC/CVC 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!
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 5:3oPM. 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.
Saturday we drove about 7.5 hours before we stopped for the night in Biloxi. 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.
We got home on Sunday evening just as the Bennetts 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.
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 Bally's Fitness and walking for a half hour in our hilly neighborhood.
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.
This pass Sunday it was wonderful being able to attend church service at Eastminster 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.
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.
Joe still has Myelofibrosis per his last Bone Marrow Biopsy. It is graded as MF-2 per the European grading standards where MF-3 is the worse stage. Dr Verstovsek of the Leukemia Department wants to put Joe back on the INCYTE 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 MDACC. Next week we will consult with Dr Winton of Winship Cancer Institute at Emory about the Myelofibrosis 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 MF. I bought him some Benedryl to see if that relieves the itching since I read that it could help on the MPN 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.
The medical community changed the name of MPD (the D is for Disorders) and MPN (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.
I want to thank my blog and Facebook readers who donated to my niece, Jaclyn Garris, efforts to raise funds for the Leukemia and Lymphoma Society (LLS) 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.
Faith. Hope and Charity! It is what keeps us going.
Blessings and thanks to all,
Saturday, June 11, 2011
6/9/11 COMPLETE REMISSION! Thanks be to God.
After some very stressful busy days at MDACC cramming tests and numerous doctor visits, Joe was declared in COMPLETE REMISSION by Doctor Oki since Dr. Romaguera 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.
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.
We start our trek home on Saturday morning and will be home on Sunday.
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.
Ciao
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.
We start our trek home on Saturday morning and will be home on Sunday.
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.
Ciao
Friday, June 10, 2011
Tuesday, June 7, 2011
6/7/11 IT'S A SMALL WORLD AFTER ALL!
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. 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. 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. 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!
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. 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!
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