Thursday, September 30, 2010

9/30/10 Just Living and Enjoying Every Moment

Wow, this has been such a special week with wonderful things that have lifted my spirits that have made me a better person.

Medical stuff needs to get out of the way first. The esteemed Dr  Ayalew Tefferi from the Mayo Clinic located in Rochester, Minnesota answered my e-mail inquiry from a few days ago seeking his advice. Keep in mind that Joe is not his patient and he is sought out by MPD patients from all over the world for treatment and second opinions. Joe and I met Dr Tefferi in November 2009 at the MPD Patient Symposium held in NYC which we had attended. I found him straight forward, funny, smart and very approachable. It was such an honor to shake his hand, listen to him speak, and ask him questions. Who would have thought that nearly a year later that I would request advice directly to him? It was the suggestion of Annette Livingston, another MF patient who withdrew from INCYTE, to contact Dr. Tefferi.

Here is what Dr Tefferi advised us:

This is how I wean my patients from the incyte drug:

1. Be near your home and your doctor and not travelling while you are
being tapered off incyte.

2. You must do this under strict and close supervision by your doctor.

3.  Go down by 5 mg drop every 5 days and once you are at 5 mg/day,
switch to 5 mg every other day for another week before you stop

Here is a link to bio on Dr Tefferi.

Now I will wrote about the more lighthearted stuff that occurred this week.

Everyday I enjoy my indulgence of having a toasted sesame bagel with light cream cheese at Bagels n More on Five Forks Tickum which is own by a hardworking Mrs. Kim. Joe goes with me also as we read the USA Today together and comment on certain stories. I was able to convert Joe to liking bagels several years ago since he did not see why I loved them so much. Keep in mind not all bagels are the same. They need to be golden brown and slightly crispy on top and a solid soft white inside. Miss Kim's place does it just right to exactly how toasty I want my bagel. On Monday we ran into Neal Nicholson, a retired pediatrician, who also is a regular at the bagel shop. Neal and his wife Vivian just came back from a Friendship Force Outbound visit to the far away and not well known country of Uzbekistan. They loved their trip and especially the people they home stayed with. Neal told me that Vivian was going to an all women's night out at Imane Moroccan Restaurant in Duluth where their Moroccan sponsored student works part time as a cook, a darn good one, too! Neal suggested that I go with Vivian and I said sure. I thought that it would be a good Bonnie TLC event to get me to do something for myself.

After leaving the bagel shop I headed to Tucker for my physical therapy session on my painful right shoulder. The therapists has me do various exercises to strengthen my shoulder muscles for 30 minutes. The therapist stretches and rubs my shoulder in various positions. Ouch, sometimes! The last 10 minutes they ice my shoulder. Since I find all of this quite boring, I put my Oldies but Goodies on my iPhone using Pandora and connect it through bluetooth to my new hearing aids which is quite extraordinary. For the first time I can actually understand all the lyrics which is another special blessing that I have recently received. I purchased the new aids at Joe's suggestion at Costco.

My next wonderful event was meeting the adored Marina Peed for lunch at Luciano's on Sugarloaf Parkway in Duluth. Luciano's is a wonderful white tablecloth Italian restaurant with great and reasonably priced food in a terrific atmosphere. Pablo, the personable General Manager, knows how to create a great restaurant from the dirt on up which includes the wonderful Pampas Argentinian Steakhouse and Luciano's in Alpharetta. When I walked in the door, sweet Pablo greeted me with his big smile and a bear hug since we knew each other through business at Bank of America. There was vivacious Marina to my left waiting to give me a hug. We were so glad to see each other since we have a mutual admiration for each other. I met Marina through the Greater Atlanta MPD Support Group where I am the Atlanta MPD Coodinator. Marina has a tough case of Polycythemia Vera (PV) which is the first blood disease that Joe had. She also suffers from another unusual autoimmune disease but somehow she keeps smiling and living life to the fullest even though she had to resigned from a job she loved because of the excessive fatigue from the PV. What a great two hours of conversation we had! She shamelessly gave me a basket filled of caregiver goodies and truly the best fudge ever as reviewed by Joe. My day was made so bright and hopeful because of Marina. She made me feel like it was a surprise birthday party for me. Now tell me, how totally awesome is that!

At 6PM Vivian Nicholson picked me up along with her Moroccan student and Neal. I was a few minutes delayed since I was communicating with the medical staff at MDACC. I had to rush trying to find my phone and  stretch and grab my purse. Big mistake! It triggered the worse pain in the shoulder than keep giving and giving after I stopped the motion. Grimacing I ran out to the waiting car. Vivian had to get Nealskateline hockey game where she was the only girl on the time. She is truly a girl after my heart with that spunk! The sky was dark with storm clouds when we dashed back to the car along with one of Vivian's daughter whose daughter was the hockey player just as the big fat raindrops started to flow from the storm clouds. We all made it without getting soaking wet. Vivian is a great driver and proved her skills driving in the pouring rain to the restaurant on Peachtree Industrial in Duluth. Robbie, the Moroccan student, rushed to the kitchen to cook and Vivian's other daughter met us. Both Vivian daughters have successful careers with jobs they love and that make a difference in his crazy world. One teaches autistic students and the other works at Egelston's Children Hospital as a occupational physical therapist. They are both attractive and outgoing just like their Mom. The restaurant interior was very colorful with the red Turkish rugs and ornate octagonal low tables and straight backed tiny low chairs. It was a challenge for all of us to figure out how to sit since there was no place to put your legs under the table so one sat sideways. Since Vivian has been to Morocco through the Friendship Force she guided us on what to order. She directed us well. There was a Moroccan female DJ playing those belly and rear end shaking music. Since there were no men around, the women were free just to be and they were. They sure can shake their booties and boobies. The four of us paleface Americans did our best imitation with laughter and enthusiasm,. The two career ladies left early and I was so tired also and really wanted to leave with them but Vivian told me that I was stuck with her. So we waited and waited what seemed forever for Robbie to get finished in the kitchen where she worked so hard for a lousy $7 an hour. Obscene. Vivian and I decided to join the Muslim ladies  dancing and trying to imitate their moves. We got our exercise and plenty soak and wet from exerting ourselves but we enjoyed ourselves. I think we finally left about 11PM and we had to pick up Neal at one of the daughter's home as Vivian was suppose to do. The house was all dark when we drove up and Neal had left much earlier with his son in law taking him home. Next I was dropped off at my home and the lights were still on in the house. Joe was up waiting for me and said that the Braves game has just ended and that was why he was still up. Sure, Joe!

The next day on Tuesday I went to visit Beth Stephens who is my best friend's 50 year old pretty daughter who has a very serious progressive heart disease. Beth also has a severe hearing loss and reluctantly wears hearing aids like me but hers does not seem to help much. Beth had found my blog fascinating from the caregiver's point of view and wanted me to come over and visit her to talk about her patient point of view. She had cooked some delicious muffins which I ate along with her and we talked for three hours. It gave us both an outet for our emotions. In fact while I was there, I had gotten the courage to call INCYTE Corporation directly. Beth smiled and have me the added courage and support to do that. God has given me another blessing and we helped each other. I could not find my car keys when I was about to leave. I had forgotten how to get to Beth's house and drove all around the neighborhood and used my iPhone and Facebook to have her call me to HELP since I did not have her phone number. I eventually called Beth's Mom in Virginia who directed me to Beth's home while talking to me as I drove up. Beth met me at my car door and off we went into her home. Well, guess where my keys were? Yep, they were still in the ignition and the car was still running. Funny stuff! Beth said she would not tell anyone thinking that I would be embarrassed but I said heck no. This is funny stuff and makes life interesting and that I would write about it on my blog. Oh, one other special thing happened while I was with Beth. I put my hearing aids in Beth's ears using the Bluetooth and now she could hear all the words of her beloved, Barry Manilow. She is the most avid Manilow fan ever. Someday I hope that she gets to meet him in person since it is a dream of hers.

Last night, Wednesday, was Caregiver's On Line Support sponsored through the American Cancer Society. I think there was about 10 of us on line discussing the lows and how to cope with a loved ones terminal disease. Each person helped the other. On line Support groups are a valued resource whether you are the patient or caregiver. You get important information and emotional support. I belong to two for MPD and two for Cancer. It is so rewarding and I have made friends in Great Britain, Italy, Spain, South Africa, Canada, Chile, Australia and New Zealand as well as most of the United States. One bonds with other people who are going or have gone through the same thing. One finds other things in common. You cheer each other when there is good news. You are compassionate and thoughful when there is bad news, You share news in medicine. You share in the  joy of new life. You cry and mourn when one of own dies. There are heroes everywhere. God has truly blessed me. God is here. God is listening to our prayers. God is directing and supporting you. God is love and good.

God bless all of you. Thank you for your prayers and support. It means the world to me and Joe.


Wednesday, September 29, 2010


AMAZING! While we were visiting Lamar (Joe's Mom surviving hubby) in a Bremen Hospital. Pamela, VP from INCYTE called me and apologized for not getting back with us yesterday. She bridged a conference call with INCYTE Head Medical Physician. Dr Rick Levy, who was at his home. He spoke with us for at least a half hour and we got the information we needed to wean Joe off the INCYTE.

Dr Levy stated that he could not give us medical advice but would give us some information and answer our questions. He stated that the INCYTE would be out of  Joe's  body before the Chemo even if he stops it the day before. The reason for that he stated was because INCYTE only has a half life. For example if one were to take 100 mg of INCYTE that in four hours there would only be 50 mg left, in four hours more only 25, four more hours 12.5 mg etc... He stated that Dr V is the expert and should had been able to tell us that and how to get off the INCYTE. I told De Levy that I thought exactly the same thing and it was why I was concerned. He did say that there were a few who came off of INCYTE quickly who had dire results, some who came off of it slowly had some of the previous symptoms return and some had no issues at all. Dr Levy expects that Joe will feel like he did before he started the INCYTE  which means severe fatigue, sweats etc.  He agreed with me that he would also have Joe completely off the INCYTE a few days before the FCR chemotherapy. He stated that if Joe started to feel really bad then he could go and take the INCYTE even up to the day before the chemo. He also stated that it would be highly unlikely that Joe would be permitted back on the INCYTE trial after he completes the FCR chemo since one of the conditions to be on the INCYTE trial is that the patient can not have any other cancers and now he has it. I told Dr Levy and Pamela that Joe loved the Incyte since it improved has quality of life with energy and the reduction of sweats and fever. Dr Levy stated they anticipated that INCYTE would be approved and on the market in one year or shortly thereafter. In Joe's case they would work with Dr V making Joe a special case when he is through with the FCR chemo for the CLL.

Dr Levy and Pamela stated that no one contacted them via e-mail nor phone but perhaps one of the other people on the staff and he would pin it down who was contacted to resolve the issue of  why they did not respond quickly.  He believes that Dr V probably wanted a bit more information about Incyte with FCR and about Joe being able to go back on the INCYTE in the future.

Joe started the INCYTE reduction tonight from 15 mg to 10 mg  twice a day for 7 days then he will reduce it to 5 mg twice a day for 3 days then stop totally and have 2 to 3 full days completely off of it before the chemo starts on 10/12.

It is now a watch and see how Joe's body reacts to the slow withdrawal of the INCYTE. Please pray for a smooth withdrawal without any complications. Your powerful prayers have worked so far so please keep them up.

 I am beat so good night our ARMY.




9/29/2010 INCYTE withdrawal update

While I was at Physical Therapy for my right shoulder, Dr. Verstovsek's clinical nurse, Cathy Lewis, called to speak with Joe and me. Since Joe was at home working in the yard, Cathy would call Joe after speaking with me. So after a week of waiting, Cathy had communicated with INCYTE. INCYTE said that Joe have to be off the INCYTE while on chemotherapy but there was no down time needed before he started chemo. Cathy advised Joe to decrease his dosage of Incyte, the trial drug for Myelofibrosis, from 15 mg twice a day to 10 mg twice a day for a week. The next week following to decrease it to 5 mg twice a day with the last day being the day before he starts the FCR chemotherapy on 10/12 at MDACC in Houston.Once he is off chemo then he could start the INCYTE again for the myelofibrosis.

While I was in the parking lot after getting out of physical therapy, Joe called and stated that his sister Rick and Donna would meet us for lunch since they were in the area. Rick and Donna had been out to Joe's and Donna's Mother's grave in Decatur and had put a white stone border around the tombstone to prevent the cemetery's lawn mower from nicking small pieces off the tombstone. Donna took pictures of the tombstone and it really looks so neat now. Martha would be pleased.

I met all three of them for lunch at Enzo's Pizza in Tucker. We started to sit outside but the yellow jackets chased us in. I told all three of them what Cathy said about coming off the Incyte and I gave my opinion that Joe should be totally off of it for 4 days prior to getting the chemo but that it is Joe's decision, Joe stated that he would call Cathy once we got home. He did. He took it all at face value and instructed me not to speak or ask questions. After he hung up, Joe told me that he would do what they instructed him to do. Joe does not like to make waves or speak up. He is afraid that they would deny him the Incyte in the future which makes him feel good and have a good quality of life. It is Joe's body and he should make those decisions but I feel that my plan is safer. We shall see after we have more quiet time to talk.

I will write later tonight about the lighter aspects if living life as full as we can make it.


Medical Update on Joe's CLL

So much has happened the last two days that I am going to break it down into two different blogs. This one will concentrate on the medical aspects.

I had e-mailed Dr V and his clinical nurse on Monday as to the INCYTE update. Cathy e-mailed me back that once she heard from INCYTE that she would contact us and that she had sent another e-mail to INCYTE on Monday afternoon which I am sure was from my follow up. Lesson: KEEP BUGGING THEM!

Last evening I went back on to see if anything new was written up and there was for the two days we were at MDACC last week.

Dr Michael Keating, CLL expert at MDACC who we saw first,  wrote on Joe's Patient Reports the following:

" I personally conducted the history and physical examination of Mr. Evans, together with Dr Xavier Badoux, on 09/21/10. The patient has evidence of an autoimmune myeloproliferative neoplasm, but also chronic lymphocytic leukemia. He has a past history of polycythemia and has increased megakaryocyte mass and collagen fibrosis. The rapid rising count is a cause for concerns. We will evaluate and discuss with his primary physician, Dr Bistodek (sic), what the most appropriate approach might be."

Later on that same day we met with Dr Verstovsek (V) which was dictated by the nonchalant Dr Eric Sung Yung Kim. It is a full page but I will write the most important parts of that report:

DIAGNOSIS: Chronic lymphocyctic leukemia and myelofibrosis.

IMPRESSION: This is a 67-year old gentleman with post-polycythemia vera myelofibrosis and chronic lymphocyctic leukemia, currently on treatment with INCB 50 mg b.i.d , doing well. (Please note that the 50 mg is wrong and Joe only takes 30 mg daily and I e-mailed them the error).

PLAN: The patient is doing very well in the myelofibrosis standpoint. The patient has seen Dr. Keating to address his chronic lymphocytic leukemia and he will go back to see him tomorrow to discuss treatment.
All their questions answered to satisfaction and we are in agreement.

Dr V adds a small subscript:

HISTORY OF PRESENT ILLNESS: This is a patient with myelobifrosis, on INCB. This is a JAK2 inhibitor. He is here for follow up. He is seen by my fellow. Please see his note for details.
PLAN: We will continue therapy. The spleen is 19cm and also 12 cm from the umbillicus to the right.

On that same day, 9/21, Dr Keating and Dr Badoux wrote more detail on the Patient Report but was more thorough and more accurate than Dr V and Dr Kim. I found this report more interesting perhaps you will too:

REASON for APPOINTMENT: Consultation for chronic lynmphocytic leukemia in the setting of a myeloproliferative disorder.

BRIEF HISTORY: This is a 67 year old male from Stone Mountain, Georgia who has a 13-year (really 11 years) history of polycythemia rubra vera. He was initially treated with phlebotomy and interferon alpha but because of the flu-like symptoms, the patient continued on Hydrea for the next 10 years. In 8/2008 (really June 2008), the patient developed significant constitutional symptoms including night sweats, fatigue, loss of weight, and poor energy. It was also noted that his white blood cell count was elevated and he was investigated with a bone marrow biopsy, which confirmed the diagnosis of pos-polycythemia myelofibrosis. The patient was referred to MD Anderson Cancer Center for further management of his myelofibrosis and he was placed on JAK-2 inhibitor Incyte drug INCB and he is currently on 15 mg p o twice daily. Since 5/21/2010, the patient has had a progressive rapidly and his current account above 100,000. At about that time, he was noticed to have also a lymphocytic infiltrate in the marrow with a bone marrow biopsy (this is wrong, the BMB was in February 2010 not May 2010), his immunohistochemistry consistent with CD5 positive B cells. Interestingly, his bone marrow prior to that period of time did not identify any lymphocytic abnormalities. In the last year or so, the patient has had recurrent respiratory tract infections that have been prolonged. He has had  a couple of episodes of shingles above the left eye and recurrent herpes simplex viral infection of the lip. The patient has some mild night sweats (not mild in our opinion), although most of his systemic symptoms have improved significantly on JAK2 inhibitor. He has not noted any significant lympadenopathy, although he did have a prominent left inguinal lesion that flared up a number of months ago. He does have some easy bruising and has large ecchymosis over his legs, but no active bleeding or petechiae. He does have progressive splenomegaly and abdominal distention.

REVIEW OF SYSTEMS: There are no other abnormalities on 12-point systems review.

GENERAL: This is a middle aged gentleman (THANK YOU). He is in no acute distress. He is alert and oriented x3, euvolemic and well nourished.
VITAL SIGNS: Temperature 35.8C, pulse rate 92, respiratory rate 20, blood pressure 119/65, weight 84.2 kg
HEENT: The neck is supple. Mucous membranes are most. There are no mucosal lesions.
LYMPHATICS: There is so significant lymphodenopathy in the cervical, supraclavicular, axillary, or inguinal areas. The patient does have some some palpable lymph nodes in the neck and inguinal areas. However. these are less than 1 cm in maximum diameter.
RESPIRATORY: The chest is clear to auscultation.

ABDOMEN: The abdomen is moderately distended. This is massive splenomegaly palpable 20 cm below the coastal margin and 10 cm across from the midline. The liver edge is just palpable below the coastal margin. There are no obvious masses palpable otherwise.

LABORATORY DATA: CBC, white blood count 137,3, hemoglobin 9.6 g/dL, platelet count 77,000, ANC 8.2, ALC 123.6, Chemistry, BUN 31 mg/dLm creatinine 1.2 mg/dL, LDH 849 International Units per liter, GGT 119.

1. POst-polysythemia myelofibrosis. The patient is currently on Incyte JAK2 inhibitor 15 mg p o twice daily. He appears to have had good symptomatic response to this medication, although his spleen remains enlarged. It is difficult to know whether whether this is predominately due to the chronic lymphocytic leukemia or the myelofibrosis. However, his disease appeared to be reasonably well controlled until the recent progression of his B-cell lymphoproliferative disorder.
2. B-cell lymphoproliferative disorder. This appears to be chronic lymphocytic leukemia. We well confirm this further with flow cytometry. We will also perform some prognostic markers for further information and planning of treatment. The patient may have a predominately splenic version of chronic lymphocytic leukemia, whichg may partly explain his splenomegaly and this may respond to therapy. The patient will return to see us to discuss results of investigations and treatment planning. We will communicate further with Dr. Verstovsek once we have further information.
3. Moderate anemia. The patient is mildly symptomatic with fatigue and some shortness of breath. We will preform hemolytic screen to exclude that possibility and look for alternative cause of anemia including vitamin B12 and folate in view of the high MCV.
4. Thrombocytopenia. This is likely related to hypersplenism. The patient has no indication of therapy at this point. We will continue to monitor.

Dr Michael Keating has personally interviewed and examined the  patient and formulated the above plan of care.

Michael Keating MD dictated by Dr Xaviwe Badoux


LABORATORY DATA: CBC (I am only listing the additional data)  gamma CT 119 units per liter, Beta 2-microglobulin 7.8 mg per liter. Vitamin B12, folate and iron are normal.

1. Chronic Lymphocytic Leukemia. The patient requires therapy. He has massive splenomegaly, which may partly related to his CLL as well as progressive lymphocytosis and a recent drop in hemoglobin. We suggest he should start FCR chemotherapy with some dose reduction. We will discuss this further with the patient. We recommend to use fludarabine 15-20 mg/m2 and cyclophosphamide 150-200 mg/m2 with rituximab as usual dose. We will discuss further with Dr. Verstovek for coordination of therapy. The patient will return to see us for therapy in early October.
2. Myelobibrosis. The patient is on JAK2 inhibitor INCYTE. We will need to communicate with the trial coordinator to determine when and how the patient should come off therapy or whether they will have a dispensation to continue.
3. Seizure disorder. The patient will need to continue following up with his neurologist for management of the seizure disorder.
4. Skin Cancers. In view of the chemotherapy and known history of CLL, it is important for the patient to have continued surveillance for skin cancers

My viewpoint:
Dr. V has kept the myelofibrosis under control and Joe has responded well to INCYTE. I still feel that Dr V should have personally informed us on what the BMB in February 2010 stated and I believe that there should had been a closer look at the new BMB diagnosis stating:

CD5+CD20+ Aberrant B Cell Infiltrate, consistent with involvement by Lymphoma
CD5+ B-Cell Lymphoma/Leukemia in Peripheral Blood by Flow Cytometric Analysis

When I questioned Dr V personally and my alarm, he told me not to worry about it and those words just scare people and continue what we were doing. I am sure that he felt like many physicians that CLL is slow growing and it was not a concern and that Joe was doing well on the INCYTE is controlling his MF symptoms. I still find it strange that I am aware of the fast growing wbc and lymphocytes results on his regular local CBC.  I also find it strange that I was not notified of his last BMB on July 2010 that now his disease is diagnosed specifically as MF3, CLL and SLL and Joe's local CBC counts were skyrocketing. My dissatisfaction is that I had to find out this on my own AND that Joe should had been referred to the CLL expert who were right there in the same department. It does not change Joe's situation and I really feel that I caught it in time. I am so grateful for on line records that a patient can review  and see for themselves. You should use every tool that is available to  patient.

We have been waiting since last Wednesday a response back from Dr V after his team gets instruction directly from INCYTE Corporation about coming off of INCTE, any adverse concerns with INCYTE with the FCR therapy as well will Joe be able to go back on the INCYTE drug to keep his Quality of  Life good. As of  Tuesday night, we still have no word. I have contacted Dr V and his clincal nurse, Cathy, several times and they stated that they had e-mailed INCYTE but they had not responded and that Cathy sent another e-mail to INCYTE on Monday afternoon. Still no word by late Tuesday afternoon, so I called INCYTE Corporation twice before I was able to get a real person on the phone. I spoke with Pamela, VP of Investor Relations, who said that it would be unlikely that INCYTE would not had responded to Dr V's staff at MDACC. Pam stated that the INCYTE physician on staff in charge is Dr Rick Levy who happened to be in their offices today. She agreed that it was important for MDACC to know about any drug interactions and the recommendation on how to go off the INCYTE. Pam stated that she would have Dr Levy call me but of course he never did. I thought perhaps she had him check his e-mails and/or call Dr V about why is Mrs. Evans contacting him directly. Earlier this evening I e-mailed Dr V and he responded that they he does not know why the delay in getting word from INCYTE and he would have Cathy call INCYTE on Wednesday morning. We shall see but now I have two names at INCYTE Corporation whom I will stay on top of.

Joe continues to stay busy around the yard and vehicles. It is amazing to me how much he does. Today he did even more. He loved the cooler weather that has invigorated him. I still feel that he is blocking all of this out but he is aware of the seriousness of it. I tell him everything I find out since I do not want him to feel that it is out of control. He is eating well and enjoying our dining out.

I am surprised that my little blog has created so much discussion on the two support sites that I am enrolled. It is healthy to have the discussions and I find that they reinforce that what I am doing is right. I love the comments on the blog as well as the e-mails directly to me as well as on the support lists. It is uplifting and I feel less stress and anxiety because of you. Little did I know that I would be helping others when I was just trying to cope. The blog for me has been a success since I am coping so much better. Thank you all.

I will have to do the personal event blog perhaps tomorrow since this one has taken me hours to do. You will surely get a few chuckles when I write the more " life goes on" stuff.

Till then,

Sunday, September 26, 2010

Sunday: 9/26/10 Enjoying a Rainy Day in Georgia

As usual Joe woke up at 7AM. He has always been an early riser which came from his career years at the telephone company. He gets pleasure going to Starbucks and getting his cafe' grande mild and a pastry. He worked on spit polishing his shiny red Ford F150 Pick Up with Max, our golden retriever mix watching his every move and begging Joe to throw some of his toys. Well, Max is a retriever after all.

I am a much later riser than Joe since I do not go to sleep as early as he does and it takes me awhile to fall asleep. I got up about 9AM and got ready for church and walked out to examine Joe's handiwork and asked him if he was going to go to church with me. I reminded him that we were the assigned Greeters today and told me to go ahead and go to our favorite bagel shop and that he would be ready when I returned. He was!

I wondered if Joe would really be up to being a Greeter today since he knew that the church members were aware of his condition. He was up to it and did a great job welcoming members and guests and lightheartedly that he was still around with a sly chuckle that put people at ease. I was so proud of him. Today was Choir Installation Sunday where all the choirs were introduced and sang. How we loved the little ones singing and being little kids. It is so precious. Our choirs are dedicated and they give a great deal of their time sharing their gifts of music with the congregation.

Joe chose one of our favorite lunch places which is Pig N Chick on Peachtree Industrial. We just love their pulled pork and spicy BBQ sauce. Great choice, we enjoyed it so much. Yummy! We were able to watch the start of the Falcon/Saints football game. Joe and I love to watch football and baseball especially if it is our teams. Joe did a great job driving home in the rain since it has been along while since it has rained here. It is a nice steady rain which should be perfect for the fescue seed we planted the day before.

We both enjoyed watching the football game with the sound of rain hitting the house. Funny how one starts to enjoy the small pleasures of life when one misses it for awhile. I love watching the rain and listening to the rolling thunder. Amazingly the Falcons played fantastic against the mighty Saints in the Superdome and won in overtime. It made the afternoon enjoyable. As I watched the game, sweet Sally Jackson who is a member of the Chancel Choir called and let me know that she dedicated the last hymn to me. How sweet is that! I just love Sally. I need to adopt her as my surrogate mother since mine has passed away.

We also received a call from Joe's sister, Donna, who is the best sister and sister-in-law a person could have. Her support and love nourishes us.

Joe and I decided to make tonight a date night. We had dinner at a boisterous Applebees and timed finishing eating perfectly by entering the re-opened Stone Mountain theater where the Super Walmart is located just as the film started. What a deal for the theater compared to Phipps and North Dekalb! There was no line and there were plenty of seats available and it cost us only $13.00 and they gave us a free bag of popcorn for a first run move, "Wall Street, Never Sleeps." We both loved the movie and highly recommend it for everyone. It will give you an entertaining education on the financial crisis as well as a sweet love story.

Back at home there was a message waiting for us from our youngest son, Mike, and Emily, our youngest granddaughter. He left such a sweet message and of course hearing the voice of your granddaughter is a priceless treasure.

I am now in the den watching two of my favorite shows, "Desperate Housewives" and "Brothers and Sisters." Thanks to DVR I am not missing any parts and I can race though the commercials.

I want to thank the people who added comments to this blog as well as the people who e-mailed me personally or through the support websites. Your moral support of this blog is rewarding.

Thank you LORD for making this a wonderful day, the whole day! The blessings we have received are so appreciated.

Ciao my followers!

Saturday, September 25, 2010


Changing air and hotel reservations can be time consuming and stressful. Joe and I already had reservations for Joe's quarterly check in with Dr V at MDACC for 10/11 and we were to return on Wednesday 10/13, I had to change the return date but now it will be with Dr Keating and the chemo. The FCR treatment at MDACC will be completed at the hospital to watch for adverse reactions. The "R" part is done first which is a monoclonal antibody therapy. Adverse reactions usually happens within the first couple hours of infusion. They have drugs that have been proven to treat the reactions. The "FC" part is done together the next two days.

I would have to extend our travel by 2 days and when I went on line to change the reservation, the Delta web site stated that it would cost us $330 more. YIPES! I decided to call the Frequent Flyer customer service and told the polite agent of our dilemma for medical reasons. Since the medical reasons could be documented, the total fee was only $30. I am grateful to Delta for this concession.

With our hotel I went back on Priceline and requested to extend our stay another two days. I had to rebid for those extra two days and held my breath to see if the $70 a night would be accepted. By the grace of God, it was. The room at the Westin Galleria is normally $295 a night and that is before taxes and fees. Another piece of good news is that the Westin has free self service parking thus it will cost us less than the Intercontinental that we had gotten at $60 a night but they charged $18 a night for self parking. Another plus is that the Westin is next to the Galleria Mall which will make it easy for us to get dinner without having to drive. I was also able to get a decent price for a rental car through Costco Travel using Enterprise Rental Cars that we will pick up at the airport. I tried to bid lower prices at Priceline but they were not accepted. An ironic thing was that the price for the rental car at the airport and in the city was about the the same price. Blessings indeed!

We worked in our front yard today attempting our umpteenth time trying to grow fescue grass. Yesterday Joe had gotten an aerator at Ace Hardware in Tucker to loosen up the soil. I had suggested the one with sharp metal points and Joe wanted the one that plugged holes into the hard ground. It was one of those times Joe had told me to shut up since he was getting impatient since no one assisted us in getting the equipment on the trailer plus he dropped his wallet and bad words came flying out of his mouth at me. So I kept m mouth shut the rest of the day as he aerated the lawn and stayed out of his way.

When I peeked out the upstairs window, Joe was not having much success with the plugger. Later on I looked out the window, he had gone back to Ace and got the one I had suggested. I did not say anything and stayed out of his way. Stupid me, I had hoped for an apology but Joe is not one to do that. It is just the way he is.

Today Joe spread the start up fertilizer in the front yard and later I spread the seed. The hard part was raking the soil which I did, which turned out to be thatching which is brutal work. I knew Joe could not handle that hard of labor. For at least 4 hours I stayed at it till I accomplished my goal of completing the entire front yard. Joe raked and picked up the residue of my work and dumped it in the pine islands. He also spread some of the wheat straw. Tomorrow after church I will need to do the side where the driveway is and a small area near the house. Hopefully I will be able to finish it before the needed rain comes. Please RAIN come gently into the day and night.

When I came back into the house the power was out and I was full of dirt from head to toe plus I was drenched in sweat through all my clothes. I peeled them off in the washer/dryer room and what a mess I made on the floor. I took a cool shower in the dark but it was so heavenly. I had to wash my hair three times. Using the flashlight on the iPhone I got dressed and somehow got my makeup on since we had dinner reservations at Parkers on Ponce at 8:15. Of course just as I finished, the lights came on but at least I was able to dry my hair. Joe was still working outside at 7:45 so I changed our reservations to 9:15 which worked out great.

The meal was so so but at least Joe and I were able to enjoy each other with the tension gone. Maybe the bottle of wine helped.

Joe is doing pretty good today. He was pleased with the arrangement I made for Houston and proud that I was able to work the system to get a decent price. I am so thankful for this.

I have gotten several e-mails from CLL patients who had FCR which was reassuring. Some were in a blog, a diary or just a good detailed e-mail.

I get contradictory advice which contributes to anxiety, second guessing and wondering if I am directing Joe the right direction. Here is where Faith comes into play where one must believe that God is directing us and directs us to go forward. It is the prayers of Joe's Army that is pulling us through.


Friday, September 24, 2010

September 24, 2010

Today is the first day of the rest of our lives. How we cope with the challenges that face us will be the focus of this blog. I created this blog as a outlet to express my inner most feelings and for therapeutic reasons. The tensions and reactions of today made me realize that I need to let it all hang out someplace. If this is too honest and raw for anyone, please realize that this is my way of coping since all that I do is for Joe's well being that I am forgetting about mine.

I will start by giving some background of Joe's blood disease and when it all started. The truth is that we do not know when it started since Joe's primary doctor at the time did not notice that Joe's annual blood tests were abnormal for at least 3 years. It was Joe's neurologist for Joe's nocturnal seizures that advised us to see a hematologist. We started with Dr Allan Freedman at Emory Eastside in Snellville and also met with several hematologist before settling on Dr Freedman because of his no nonsense approach and a well oiled run office. Freedman's confidence was reassuring. Joe's first Bone Marrow Biopsy (BMB) was done by Freedman at Emory Eastside. It was fast and relatively painful. Joe could tell that Freedman was very experienced by his fast technique. Next we had to wait till the BMB was analyzed and Joe was diagnosed formally with Polythemia Vera (PV) which is a Myeloprolifeative Neoplasm Disorder. It means that the bone marrow is overproducing red blood cells and platelets making Joe's blood thick like molasses. The danger can mean strokes, clots, heart attacks without treatment. Thank God, he did not have that happen during the undiagnosed years. There are various methods to treat PV and that was a hard decision to make. First they had to get his blood counts down by taking blood out by what they call phlebotomies where Joe sits in a chair and instead of getting blood they take it out and throw it away. We decided to have Joe take INTRON A (interferon) which was by injection twice a day. Freedman's office taught me how to do it by testing on an orange. Joe hated INTRON A since it made him feel like he had the flu all the time and all he wanted to do was lay on the couch. After giving it 6 months, Joe and I decided to have him quit that and take Hydroxyurea (HU) orally which is a type of chemotherapy which we read could cause leukemia after 10 years or so but had not been proven. Joe said that he rather that chance and have a good quality of life and that is what Joe did for 11 years along with regular plebes which got to be 4-6 months intervals which Joe was very pleased.

In winter of 2008 Joe started have a steady low grade fever, great fatigue, sweats when he was horizontal, loss weigh quickly but had a huge stomach. Joe would check in with local hematologist Freedman. Joe being Joe would tell him that he was just fine. Both Joe and I were getting ready to retire on 7/1/2008 so I decided to go with him to Freedman's office to get his blood tested (CBC) and then meet with Freedman. Sure enough Joe told Freedman he was fine and I rolled my eyes. Freedman caught that then asked Joe what was really going on. Joe told him to ask me. I told Freedman and Freedman asked Joe if that was true and Joe said Yes and Freedman asked Joe why did he not bring this to Freedman's attention himself. Joe just shrugged his shoulders. Freedman stated that he needed to take a closer look. He stated that Joe's spleen was enlarged and sure enough that Joe did lose a bunch of weight. He scheduled Joe for his second BMB within two days. We were heading on our retirement adventure to Africa on 7/5/08 so we would not know the results till August 2008 when we came back. He gave Joe his blessing to go on African Safari.

The first week of August 2008 we checked back with Freedman who was so excited about the clinical trial at MD Anderson Cancer Center (MDACC) in Houston and that he had communicated with Dr Verstovek (V) on a general basis and looked as of Joe would benefit from the trial. Joe's BMB locally showed progression to Myelofibrosis (MF). MF is one of the myeloproliferative but neoplasms where Joe's bone marrow has grown scar tissue where the bone marrow is not creating healthy red and white cells. Joe's genes had mutated and he has the JAK2 positive gene which 95% of PV patients have. Fatigue and sweats can knock the socks off of most people. The INCYTE drug trial attempts to block the JAK2 gene. It treats the symptoms and improves the quality of life (QoL) but does not cure the disease since there is no cure. It is said that once someone has been diagnosed with MF that their life expectancy is 3-5 years. There has been some progress made on mini stem cell transplant since full stem cell transplant odds were horrible.

It was important to Joe to have a good Quality of Life so we decided to join the INCYTE trial when Joe was offered it from Dr V. Joe started the INCYTE trial on 9/12/2008 in Houston the day that Hurricane Ike hit Houston and Joe was stuck there for 6 days. He was miserable but survived and has great stories to tell of his experience. Maybe it was a sign from God that Joe's experience would be a great storm. It has been and the storm continues.

The INCYTE did not shrink Joe's spleen which is now 30 cm in length which is caused by the storing of immature white blood cells (lymphocyctes) that do not want to die. Joe had a full lab day in February 2010 and when I reviewed the results on line, I noticed that the BMB pathology report mentioned CD20 and CD5 and the words consistent with leukemia and lymphoma but slightly atypical for CLL. I contacted Dr V in March why he had not mentioned this to us and he said not to worry about it and it changes nothing but the words just scare patients. Well heck, yes! I trusted Dr V and we went along traveling and enjoying life as we had. Looking back over the last 12 months Joe had four nasty respiratory infections and long lasting deep coughs. He had several minor shingles outbreaks. Some enlarged lymph nodes in Joe's groin. He had three silver dollar sized cold sores above his lip that took forever to go away. He had several basal and squamous cells removed off his face, ears and back. His night sweats were coming back stronger and his stomach was getting bigger whereas his muscle mass was decreasing. Since he had MF I have been tracking his blood counts closely and whenever they got out of whack I would notify Dr V and the INCYTE would be stopped, then started, and adjusted several times. During the last 6 months Joe's WBC starting rising quicker. Before we left for Alaska in July, Joe had full lab work done once again at MDACC in Houston as part of his clinical trial check in. When we were in Alaska, Joe got another horrible respiratory infection and cough. When we got back to Atlanta mid August, he went to get his CBC blood test locally as he usually does. Joe's WBC was 83 on 8/19. I tried to go onto mymdanderson web site to review the results of his July visit but was unable to get on line to see the results. Next CBC on 8/31 his WBC jumped to 98.6. I was now able to get on line to see the reports. On the pathology reports for the July MDACC visit it showed that Joe's Bone Marrow Diagnosis as: Persistent Primary Myelofibrosis, MF-3, Chronic Lymphocytic Leukemia (CLL), Small Lymphocytic Lymphoma (SLL).

CRAPPO! I stated why the heck am I finding this out all on my own for Joe. I sent an e-mail to Dr V to request that he look at Joe's last pathology report and get back with me. I had stated nothing else. Dr V e-mails me back that nothing has changed and to continue going what Joe has been doing. YOU HAVE GOT TO BE KIDDING ME. I could not believe that response.

I then e-mailed back Dr V that there sure had been a change a drastic change and also went over all that Joe had gone through the last 12 months. I requested that we get a second opinion from Dr Michael Keating and that we would like to see Dr Keating on our next scheduled visit to MDACC on 10/12/2010. From my immense research on the God wonderful web, I knew Keating was the top expert of CLL in the US and he was located right where Dr V was located. Dr Keating agreed to meet with us on 10/12. Next CBC blood test on 9/15/2010 showed Joe's WBC now at 120, increasing rapidly. Thanks to the nudge of Joe's Family and Friends they suggested us to get a faster appointment. On 9/16 I e-mailed Dr V if we could see them both sooner rather than later . They agreed to see us on 9/21. It was wild getting air reservations, hotel and car reservations for Monday 9/20 to get to Houston. Thanks to frequent flyer Delta mileage I was able to use those to avoid the $767 round trip fare for each of us. Priceline came through with a 4 star hotel at the Galleria for an amazing $60. The rental car deal was not so great but it was the lowest I could find with Dollar. It is obscene the add on charges that rental card companies charge. Do you know there is even a charge if you turn a car in early? REVOLTING.

So this past Monday Delta was not ready when we were since the brakes were bad on the plane we were on but three hours later we were on our way to Houston on a new plane. The car and hotel were terrific which made things less stressful . There were little kids next to our room making lots of normal kid noise. The hotel was gracious and efficient in moving our room from the 7th to the 12th floor . Now we had quiet so Joe could get a good night's rest. He did.

Up at 6AM and we drove over to MDACC. Thanks to the iPhone for directions. We checked in on the 8th floor which is the Leukemia Clinic where Dr V and Keating work out of. Joe got his vital signs and blood drawn then we wait till the blood results are done. Finally we get called at about 10:30 to see the doctors and the clinical nurse. I guess we saw at least 5 people before we got to Dr V. We got a copy of Joe's CBC for that day. His WBC is now up to 137. Climbing higher so quickly and so scary. When Dr V came in, there were 2 others docs and Cathy, the clinical nurse. He agreed that I did not over react when I brought to his attention the rapid rise in the WBC and lymphocyte count. Again I asked him why did I have to find out about the CLL on my own on line. He said that we had discussed that in March ( not really). I knew that I was getting no where. Now we had to wait to see what Dr Keating says but the appointment was not till 1pm so we headed to lunch on the first floor of MDACC where there is a wide variety of food where one can always find someone that fits their taste buds.

We went back upstairs to the 8th floor and waited. After one and half hours we get called back to the exam room where again we meet with several doctors who get info and do some examination of Joe. Dr Keating comes in and gives me a bear hug and shakes Joe's hand. He has a vibrant smile and personality. He hails from Sydney, Australia and I love him already since I never have met an Australian that I did not love. He says that he needs to wait on some more blood test results before he recommends the therapy for Joe's CLL. It is a big concern that his WBC is increasing so rapidly and tells us that he will see us the next morning.

That night we meet with our adopted Chinese family who are now living in Houston . Yan is enrolled to obtain her advanced degree in Public Health. We met Yan and Hang through the AMIGO program when Yan was a student at Emory University. We had invited Yan and Hang to Thanksgiving Dinner 2009 and also another Emory Physics Major, Xia to learn more about American Culture. We adored them all and became friends. Yan became pregnant and we got to meet both her Mom and Dad for dinner at Red Lobster. It was so special. Even though her Chinese parents could not speak English we bonded with them since we loved Yan and Hang. Yan's Mom stayed in the US to help Yan with the baby's birth in June along with the move to Houston, What a MOM!!! We met them for an amazing authentic Chinese dinner where we had our first Peking Duck and other new dishes. I tried them all (so much food) and only did not like the cold fried fish. I got to hold Yan's gorgeous BIG baby girl. I had always thought Chinese babies were tiny and petite, not this one. It must be the air in the USA. Yan's Mom was there and she just glowed and could not keep her loving hands and arms off her beautiful granddaughter. Thank goodness, Yan is breastfeeding her or she would never get to hold her bundle of JOY. They treated us to the dinner in spite of Joe wanting to pay our part but they would not hear of it. I gave the baby a soft blue and pick stuffed elephant as a small gift. Yan and Hang gave me an amazing string of pearls from their Chinese village. Both Yan and her husband are so smart and loving. What a gift God has given us with this unusual friendship! They are our adopted Chinese family.

Now it is Wednesday morning we checked out of the hotel and headed back to MDACC to meet with Dr Keating and his professional team. Keating recommends the golden CLL regimen of three drugs abbreviated as FCR and that we should start ASAP. BUT we have to wait to see what Joe must do to get weaned off the INCYTE trial drug since we know that there have been some dire cases of people who came off of it too quickly and passed away. I have now heard from others who weaned off of it without any issues. Dr Keating states that Dr V will contact INCYTE and get their input. Since I have not heard anything yesterday or today I e-mailed Dr V and he stated he was waiting word from INCYTE. An hour later Cathy, Dr V's clinical , called Joe and I back that they were waiting for Incyte and that Joe could be weaned off the Incyte before he starts the chemo of FCR on 10/12. Joe will get chemo for three days and they will watch him carefully for adverse reaction since the reactions would happen in the first couple of hours but they have proven ways to offset any adverse reactions. After that Joe will have 5 other cycles of Chemo which can be done in Atlanta. I do not know how and where that will be done.

Joe stays very active to keep his mind off of his disease. He has had very little patience with everything especially me. I need to keep him positive but he can sure aggravate me that I need to hide away for while. It is what motivated me today to start this blog.

Lynn Scott and her sweet sister, Lucy, stopped over for a visit today and bought us some coffee cake and we chatted for an hour. Yesterday, sweet wonderful Sally Jackson stopped by with her home made bread and chatted with Joe while I was getting physical therapy for my right aching shoulder. Unfortunately I came home in tears when she was here. I just became overwhelmed with so much advice and trying to assist in making the best decisions for Joe.

Oh, I also sent an e-mail to Dr Tefferi at the Mayo Clinic in Rochester, MN to get his input on how to get Joe safely weaned off the INCYTE. Dr Tefferi is a medical genius and is the head US doctor in charge of the INCYTE trial. Joe and I met Dr T in New York City last November at the Symposium and found him honest, funny and straight forward. Thank you to Annette fellow MPD CML INCYTE chat person for Dr Tefferi's e-mail address and your valued advice and pep talk.

Thank you also to Joe's prayer army and my family reaching out to me when I need it the most.

Ciao, on another adventure!

Please ignore spelling and grammar since this is NOT an English assignment.