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,
Shirley
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
NOTE:
The Myelodysplastic Syndrome is gone, but the journey continues. It continues through the healing process and the rebuilding of my system. I am so thankful for my friends, family, the doctors (especially Dr. John McCarty, Dr. Harold Chung, and Dr.Yogesh Gandhi) and all of the nurses at the MCV Bone Marrow Transplant Unit (clinic and inpatient), Dr. Gandhi's nurses, and the nurses on the second floor east at John Randolph Medical Center. I am so thankful for having Judy Davis as my former nurse, my �therapist�, and my continuous friend. To the list of doctors, I must add Dr. Gilligan, Dr. Toor and Dr. Iuorno. I have great respect for the Medical College of Virginia Pathology (Apheresis) Department, especially Dr. David Wilkinson, Dr. Richard McPherson, Dr. Susan Roseff, and Dr. Kimberly Sanford. I am also thankful for Jenni Anderson and her staff of nurses in Apheresis. I now have a Post-Transplant Coordinator, Laura Couch, to coordinate my appointments, answer my questions, and support me.
If you are a transplant patient, be an active advocate for yourself. It is important to follow the rules. Be sure to ask questions about everything; become an expert. Research everything on the Internet, as you can never know too much. Yes, listen to others, but always remember you are the final decision-maker. Do not leave anything to chance. Have an unrelated confidant with whom you can share your joys and fears. Double-check all medications and have an understanding for their purpose and their side effects. Do not allow �pity parties� to last more than five minutes as they are really a waste of time and make your eyes hurt. Do not shake hands, just become a hugger. Do not touch doorknobs; let others open the doors. Wear latex gloves when handling raw meat and vegetables. It is always good to carry a clean latex glove in your pocket. You never know when you will need one. Wash your hands frequently and constantly remind family members to do the same. The most important thing to remember is to count your blessings. It sometimes helps to list them. Keep a positive attitude. One of my best pieces of advice is to eat peanut butter, special dark chocolate, and Colby-jack (or cheddar) cheese.