March 2, 2010

Dear Family and Friends,

It is time for me to send out this update. I must remind you that March 2nd is not Dr. Seuss’s day; it is my day and has been since 1940. At first, I thought I might not post this update because not all the events of this past year are happy ones. I am posting this e-mail because; I have two personal events in the month of March. I will be 70, but most importantly, I will have my 7th rebirthday on March 15. I feel so very fortunate to be a 7 year mini-allogeneic stem cell transplant survivor.

The other day, I read a copy of my bone marrow biopsy that was completed on July 1, 2002, just two years after my diagnosis with MDS. I had to search the net for some of the terms used in the report. My diagnosis was MDS – Refractory Anemia with Ringed Sideroblasts. At that time, my normal leukocyte count was not typical of MDS. Another biopsy before transplant in 2003 mentioned that megakaryocytes were increased and frequently atypical. Well, I learned as the megakaryocytes enlarge, they release platelets. It stated that the platelets were increased in number with frequent large and some giant forms. So I was on medication to reduce the platelets. The biopsy showed a lot of iron storage that probably was a result of two years of transfusions. I had to research so many of the terms in the bone marrow aspirate and biopsy; I was amazed at all the information in the Hematopathology reports. This was all very interesting as today all my blood counts are normal. The ferritin (iron levels) levels are completely normal. All the “stuff” that the numerous biopsies showed has disappeared. All I have now is the GVH in my mouth and non-symptomatic lung GVH. As of my last appointment, the active GVH in my eyes was gone, but I will know for sure when I see the ophthalmologist on March 1.

I only mention some of the early biopsies because I feel so fortunate to be a 7 year post-transplant survivor from a rare (in 2000) cancer diagnosed in 2000. I think back to those first years when I was transfusion dependent. I hope that all those individuals that donated to the blood bank realize that they were my life blood for over two years. Without those wonderful donors, I would not have had this chance at survival. I was so very fortunate to qualify for the clinical trial in 2002-2003. I hope that by being the longest survivor from a mini-allogeneic stem cell transplant for MDS preceded by 5-azicitidine treatment, others have benefited from my role as a “guinea pig”.

I have tried to support others by sharing my experiences with MDS patients both pre- and post-transplant. I would not be able to do this if it had not been for the unselfish giving of stem cells from my sister, Charlotte. Dr. McCarty and his staff at the Medical College of Virginia certainly had the right plan for me to overcome MDS. I had the full support of my family and friends. I will continue to survive the post-transplant “bumps in the road” because I have a few more things that I wish to accomplish.

My own birthday wish is that research for the cure and eradication of cancer will be achieved. Not enough funding is designated for childhood cancer research. If you want to share in my birthday wish, please contact me, and I will share childhood cancer research contact information. It is difficult for an adult to fight cancer, but it is twice as difficult for a child. I am celebrating this 70th birthday, but also still mourning the loss of a precious grandson to childhood cancer. Thank you for allowing me to share part of my life with you. My webpage is updated through the end of 2009 and has had 1585 visits.

With love,


July 4, 2010

Dear Friend,

I have been very busy since my letter about my two birthdays in March (birth date and transplant date). We have traveled both for vacations and to my regular medical appointments. The fun first – In the later part of March, we traveled to see our daughters and their families in North Carolina and in Georgia. We traveled in our motorhome. In North Carolina, I shot pool with our 12 year old grandson, we went to an Amish Market, and we had a wonderful time. After leaving North Carolina, we camped in the Northeast Georgia Mountains. We thought we had packed enough warm clothing, but it did snow on one of the days. So we went to a pottery and watched the potters at their wheels. We then painted our own pieces of pottery. We spent one day at the outlet mall, so I had my chance to enjoy shopping at Chico’s again. We went to “Gold N Gem Grubbin’” and did not become wealthy, but enjoyed ourselves. We found both precious and semi-precious stones. We had a few pieces cut and mounted. Panning for gold only provided a few tiny nuggets……too much work to panning. We then spent several days near Marietta, Georgia. I treasure the time spent with our 7 year old grandson. He teaches me to look at the world through the eyes of a child….a pure pleasure.

In April, our California grandson flew to Virginia to visit. Oh, he did bring his dad with him, as Kyle is only 3 ½. At that age, a child is in constant motion. We tried to give him a new experience every day of their one week visit. I did go miniature golfing with them. It was hot, hot, hot on that day in April with the temperature at 85. I made it through 7 of the 18 holes of golf as it was too hot. The rest of them made it through 11 of the 18 holes. I had not been miniature golfing in years, and it may be years before I do it again.

In May, we went to Virginia’s Belle Isle State Park for several days. By going mid-week, there were very few people camping. It was quiet and peaceful with no phones, no television, and unfortunately no Internet. We did take a 1.9 mile hike through the woods, along a creek and across the salt flats. Nature at its best!

Now for the medical update. For being 70 years young in chronological age and much younger in mental age, I think I am doing quite well as a 7 plus year stem cell transplant survivor. Last December, my A1c blood test (another test for blood sugar) was a little high. Dr. Chung gave me the name of an endocrinologist to see after the holidays. I decided to delay it as the 6.1 reading was only .1 above normal, and I decided that holidays meant Christmas, New Years, Valentine’s Day, and my birthday. On our way home from our two week holiday in March, I had some extreme double vision problems lasting almost an hour. That scared me, so I made the appointment when I got home. This was followed by my checking blood sugar levels 4 times a day for one day each week and another A1c blood test. The new A1c test was higher at 6.3. After six weeks, I took my chart and had my next appointment. Dr. Cynthia Ryan analyzed the results and said that all my blood sugar tests done at home were normal. So, I am still checking my blood sugar one day each week, will have another A1c test in August and take my chart back to the endocrinologist in September. I am fine, but now I can no longer sign my e-mails to my sister as “Sugar”. She said the name just did not fit my personality.

In May, I was supposed to have my 6 month repeat of the lung CT scan and the dastardly Pulmonary Function Test. I convinced the clinic to let me wait until June. By the time I went for these tests, I had worked myself up to a “nervous” state. I had hated these tests because of previous experiences. I had the CT scan first with no problems. It did not hurt that the technician was young, kind and had sparkling eyes. The CT scan showed no change in the lung GVH….very good news.

By the time I went in the following day for the Pulmonary Function Test, I had a stomach ache. This test involves being inside a booth (not being asked Miss America questions either) with a clothes pin like clip on my nose and a big mouthpiece between the teeth and lips (not pleasant for the GVH mouth). The breathing tests involve being forced to breathe with the air supply cut. Each test is repeated 3 or 4 times. I have always thought of it as a form of torture. Well, this time the technician was great. Everything seemed so much easier. When that was finished, she drew blood from the artery in the arm (a little different from drawing blood from a vein). The reward was the result. There has been no change in my results since last November, and they were a little better than a year ago. I am so happy that my warranty has been renewed for another six months.

The GVH in the eyes has been controlled. I see my ophthalmologist every four weeks to have the eyelash culprits growing against the eyeball pulled. After this procedure, I am good for another 4 weeks. It is a good thing that I really like this ophthalmologist because we have so much eye to eye contact.

So, I will keep my appointments, take my medications, continue to survive and enjoy each day. I am pleased with my progress. I will continue to update this page several times each year. There have been over 1100 new visits since just January of this year. I have enjoyed the responses from “my readers”.

I continue to stay in contact with a few people that I have met either at the clinic or through this webpage. My wish is that they can look back and say, “Wow, I’ve made it seven years, and I plan to make it at least seven more!” As one of these friends states in his messages to others, “live well”. Those two words tell it all. So I’ll take those two special words and pretend they are mine. “Live well” my friends.


Love, Shirley

December 7, 2010

Dear Friend,

I just realized that I had not sent you an update since July 4. Our summer was quite busy this year, but not with travel. I had some medical problems, but now seem to be on the road to recovery. After reading the following, you will understand why it is so important to understand medical conditions and be your own advocate.

In July, I took an antibiotic in preparation for some dental work. This was necessary as I was still on transplant immunosuppressants. After a couple of days, my routine blood tests indicated a possible infection as the creatinine levels were too high. The antibiotics were continued for an additional seven days. Then the "bumps in the road" started as my electrolytes dropped, it was necessary to make many return trips to the clinic for IVs of sodium, potassium, and/or magnesium. Then other problems developed when my hemoglobin dropped and my platelets and white count elevated. I had frequent morning blood pressure drops (70/45) and then normal readings except when rising from a sitting position and then more level drops. Now this is where the advocate part begins; I requested an iron level panel and thyroid tests. My iron levels were low and I had become very hypothyroid. I began daily iron supplements and my thyroid medication was increased. This is how I spent my July and August. The hospital bills sent in for insurance payment for all the blood tests and many, many days of IVs amounted to $35,000 for the months of July and August.

As a result of the increase in the thyroid medication, I became hyperthyroid and the medication is now below the original dosage. The hyperthyroid problems have caused weight loss, blood pressure changes, and sleepless nights. Hopefully when retested in January, the TSH levels will have improved. It is a long process to correct and regulate medication dosage for the thyroid.

My blood pressure is back to normal as my dosage of medication has been dropped from 5mg to 2.5mg and now to 1.25mg. I no longer have problems of rapid heart rate and/or low blood pressure when rising. After three months, the bouts of dizziness and light-headedness disappeared.

Another improvement has been in the A1c blood sugar testing. Those levels are back to normal. The A1c test measures the sugar levels from a blood draw. Blood cells may live for up to 90 days, so A1c testing is only done every 2 to 3 months. I had been testing my blood 4 times a day, but just one day a week. I no longer need to do these checks. I am just checking it 4 times one day a month.

BTW, I did have some dental work (cleaning) done, but had the antibiotic via IV three days in the clinic to be sure that I did not have any reactions. This no longer will be a problem as I am now no longer immunosuppressed. I have been off of the Tacrolimus for three months and the only problem has been some mouth GVH, which I can handle.

I have had my flu and pneumonia shots. There are no current plans to give me my "baby" shots. I need to study the long-term plans as I do not have immunity to the childhood diseases. Ah yes at 70, I still have long-term plans.

Now jumping ahead to more dental work. I had a lesion on the roof of my mouth that had to be removed. I am no longer immunosuppressed, so I did not need to have the antibiotics that cause problems for me. I went to the most amazing oral surgeon, Dr. Jeffrey Cyr. Not only was he gentle, caring, and professional, it did not hurt that he was easy on the eyes (a senior citizen can say this). I had "laughing gas" and giggled, and then an IV of Fentanyl and I guess it was off to la la land. I really thought that I was awake for the procedure, but I only really remember the beginning and the end. When we got home, the bleeding continued for two hours without stopping, we returned to the dental office. Four needles of numbing solution were injected. A patch was placed on the incision. I knew my mouth was numb when the doctor told me that I could stop biting him. I was monitored every twenty minutes. After 2 hrs and 15 minutes, I was released. I was so very impressed with the medical care, especially the time spent in monitoring me before release. Then the "good doctor" even called at 5:30 to make sure that I was doing well. The only downside was waiting for the roof of the mouth to heal. The GOOD NEWS, the lesion was benign. One week later, I returned for a check of the mouth and was told that everything was healing nicely, and I would be able to return to my normal diet in a week or so. The downside is that he does not need to see me again.

I continue to have the eyelashes pulled every four weeks. The plan is to consider having the lower lids cauterized so that the eyelash pulling will no longer be necessary. Now I must decide the order of cataracts first or the cauterization first. I am sure that both are minor procedures.

I know that this sounds like a lot of stuff, but I have kept it all in perspective by remembering the past eight years since transplant. I know that I am a survivor, so I know that I can put all this in the category of "bumps in the road". I only share all of this because there are many other transplant patients that have read my journal. I hope that I have provided some information and made them realize the importance of being your own advocate. My website has been visited 4025 times, and many other patients have communicated with me. I am happy that my friend, Jill, in California is at home reclaiming her life after a May transplant. Jill is much younger by at least 20 years and has three daughters with one still in high school. Another friend, Marion, just recently had her transplant at Sloan-Kettering and has been released to Hope Lodge with the hopes of being back in New Jersey by Christmas. Her special gift was being able to go home for Thanksgiving weekend. Marion is even younger at 41 with three school-age sons. These are just two of my many new friends that I have not met.

Now for the really good stuff..we were able to take the motor home for two weeks for our fall trip to visit our daughters and their families in North Carolina and Georgia. This time we stayed in Hiddenite, North Carolina. Kim and Tyler came and spent some time with is during the day. We all went to an apple orchard and picked apples. When I got tired of walking, I just sat in the wagon with the apples and "let" Tyler pull me through the orchards. We probably picked over two bushels of apples. Ross and I also went to the Hiddenite Mines and did some "gemmin". I am anxious to see the results of the baggie of emeralds after they have been in the rock tumbler. We then went to the northeast Georgia Mountains for a few days before heading to Marietta to spend a few days with Kelli, Mike, and Cameron. We enjoyed our visit, especially our visit to the pumpkin patch with Cameron. Cameron selected some beautiful pumpkins.

Now we are getting ready for the holidays. By December 5, the shopping was completed, the cards addressed and the tree decorated. Kim and Tyler will be with us for Christmas. I am looking forward to the possibility of other family visits in the near future.

So, my friend, I know this is a long letter, but I hope it finds you well and enjoying life. Thank you for letting me share to my journey with you. As I look back, I find that I have been very fortunate. My great days far outnumber the not quite so good days. Hopefully, I will remember to update you before July of 2011. Merry Christmas, Happy New Year, and bless you.


Love, Shirley