March 8, 2008
Well, my birthday has passed and my re-birthday is on March 15. I am 68 in real years and almost five in re-birthday years. So far, it has been an eventful 2008. I am on a self-imposed quarantine as the flu season is at a peek in Virginia. I am determined to stay healthy.
The end of January brought some discomfort. I had my Photopheresis treatments the last two days of January. The first day of treatment was quite eventful. In Photopheresis, blood is drawn in six cycles with the white cells removed and the red blood cells returned to the body. At the end of six cycles, the white cells are treated and returned to the blood stream. At the end of the first cycle, I felt quite bad and finally told the nurse. My throat was dry, it felt like my mouth was swelling, and I had trouble swallowing and breathing. My blood pressure went to 87/35 and I turned the red color of the hazardous waste bin. The three nurses sprang into action. Up went my feet, down went my head, an ice bag was placed on my head and I was infused with fluids. I finally stabilized and the treatment was aborted after four of the six cycles. Well, I went back the next day, and the same thing happened at the end of the first cycle. The only difference was that I reported it as soon as I started feeling bad. They stopped the process. They reset the machine and started over. In the meantime, a doctor came in and watched. Well, at the end of the first cycle, it happened again. They went through the same process, up with the feet, down with the head, ice, and fluids. The doctor had the treatment aborted. He immediately started checking patient records. That was on a Friday. He called on Monday morning, to let me know that the common denominator was the bolus dose of Heparin. He called the FDA, Baxter Healthcare, and the CDC. The Virginia State Health Department visited the hospital on that Wednesday to check patient records and filed a report with the CDC. The result was a further recall by Baxter Healthcare and the inspections of the supplier in China. I am naturally anxious to hear what the contaminant was. I have been following the reports on the Internet and in the paper. I sent letters to our district representative and senator in the United States Congress. They did not acknowledgement of receipt of my e-mails. Hmmmmm….future voting decisions.
Kim and Tyler have been here for a visit. We are busy planning our spring travel. Ross will have the motorhome ready for travel by the end of the month. In April, we will travel to Savannah, Georgia. We have never been there. Then we will continue on to see Kelli and her family in Marietta, Georgia. We plan to travel to Michigan to see my older sister in July. My younger sister will also be there. It will be a sisters’ reunion. Then in November, it will be back to Georgia, and Myrtle Beach, South Carolina. We will plan additional trips based on the price of gas!!!. A motorhome is a gas-guzzler.
This is a brief picture of the last eight years. Besides being a five-year transplant survivor on March 15, it will have been 2810 days since I was diagnosed with Myelodysplastic Syndrome and 1826 days since my transplant. Before the transplant, I had 125 units of blood. Since the transplant, I have had 162 Photopheresis treatments, two ports and two Hickman implants in my chest….all removed except for one port. I also have a pacemaker….the beat goes on.
Now the better stuff….I have four grandsons – two since transplant. I have had an additional 8+ years of marriage for a total of almost 46 years. We bought a motorhome in the summer of 2005, and we have traveled through or to West Virginia, Pennsylvania, Ohio, Indiana, Maryland, Michigan, North Carolina, South Carolina, Georgia, Tennessee, Oklahoma, Texas, New Mexico, and Arizona. Naturally, some of our trips have been in Virginia. We have visited many important people that have touched my life from family to high school and college friends.
I still use a cane. I actually own four of various designs and colors. Hmmm…five years, maybe it is time for cane number five. I have not decided if the cane is a necessity, security or a fashion statement. I do need the cane for a few hours after the Photopheresis treatments. I try to match the cane to my outfit. I still decorate the mask that I must wear in the hospital until I arrive in the clinic. The mask also matches the outfit. I am maintaining a weight of between 114 and 118 pounds. The blood counts are still spectacular. No “baby” shots yet as the treatment for the mouth GVH continues.
I continue to enjoy life. Yes, there have been some little bumps in the road, but no “potholes” since the spring of 2004. I feel very fortunate to have been part of a clinical trial and to be a “survivor”. I hope sharing my experiences will help others. I am now up-to-date on my letters. I will send another one after our travels this spring, summer and fall.
Yes, we will keep in contact by telephone and e-mail. Thank you so much for being my friend.
September 1, 2008
We have been extremely busy since my last letter in March. I ended my self-imposed flu season quarantine and resumed enjoying myself.
Well, I did receive some responses from my three severe reactions to the tainted Heparin in January. I have heard from several lawyers that I do not qualify for a class action lawsuit, as fortunately I am still alive. I did receive two very good responses from Senator Jim Webb of Virginia. He actually sent my first letter to the FDA. The second response included a copy of the letter that the FDA (actually they even used my name in the letter) sent to him in response to his inquiry on my behalf. Because of his kindness and taking the time to help me, I may even vote for him when he is up for re-election.
In April, we traveled to Savannah and spent several days sightseeing. We then traveled to Marietta, Georgia, to visit with our daughter, Kelli, and her family. We went back to Georgia again in May for Matthew’s Make-A-Wish Luau before their trip to Hawaii. Kim and her family joined us in Georgia.
In May, I took part in a course offered to transplant nurses at the Medical College of Virginia. I spoke (without notes, I had them but did not use them) for 10 minutes about my journey with Myelodysplasia. Even with my experience as a Coordinator of Gifted Education and giving presentations, I was extremely nervous before speaking. Within two days after the class, this story on the web was read more than 20 times. Must have been the nurses! I will be taking part in the next class in November.
On June 19, we moved into a new apartment in Midlothian, Virginia. This is a larger apartment with a more open floor plan. It is also a gated community. We have a first floor apartment. The best part is instead of 30 minutes from anything, we are now two minutes from everything. We are two minutes from Stein Mart, Kohl’s, Barnes & Noble, Michael Crafts, and the grocery stores. Now this is a real gas savings. We are now 30 minutes from the hospital instead of 15 minutes, but we only make that trip 3 times a month. Kim and Tyler stayed here for several days and helped with the move. We rewarded Tyler’s hard work with crab legs and a movie date with his mom.
In July, we took a two-week vacation to Waterford, Michigan and spent 5 days with my donor sister and her husband. We had wonderful time. Naturally, we traveled in the motorhome. We had great weather except for one big, big storm in Ohio. It occurred in the late evening. There were tornado warnings, but all we felt was a little rocking of the motorhome. Whenever there is a storm, I react like Chicken Little – the sky is falling!
In August, Kim and Tyler (10) spent a weekend with us. She drives from up from North Carolina when there is a break from all of Tyler’s sports.
We have started to reduce my Tacrolimus (immunosuppressant). We are reducing it gradually as I previously had to restart medication because of increased GVH. This month, I am down to 2ml twice daily. We are dropping 1ml twice daily each month. One doctor is checking to determine if there is a possible rebound reaction as my blood pressure increased at the end of July. We have that under control with 5mg of Norvasc daily. The most common side effect of Norvasc is dizziness that occurs mainly in the evening. I may have mentioned before that if a medication has a side effect, I usually have it.
This month brought the end to taking Coumadin. I did not need it as the lines that had little clots on them had been removed a year ago. I was not on a therapeutic dose, just a maintenance dose. I questioned the taking of “rat poison” since the Hickman Catheter was gone. In addition, I no longer need to have the monthly breathing treatments with Pentamidine because the Tacrolimus levels are so low. Pentamidine protects the lung of an immune suppressed system from a deadly pneumonia. I just had my last 20-minute breathing treatment on August 27.
Scott and his family will be arriving from California for a visit on September 13. I am hoping that Kyle (almost 2) will remember me. I have talked to him on the phone. He has communicated with me in his own language! The will fly back to California on September 18. I hope that what they say about children keeping a person young is true. Hmmmm…a two-year old boy, a ten-year younger grandmother!
Generally, I am doing well. I am hopeful that in another six to seven months I will be finished with the medications and finally get my “baby” shots. I still have GVH of the mouth so will continue with the twice-monthly Photopheresis treatments. I am just happy that the “good” heparin is in use with the treatments. I have had a few little bumps in the road, but nothing major. I have been following the progress of several other MDS patients through the CarePage web site. I have even offered a little “motherly” advice. I feel truly fortunate to be able to share my experiences with others.
I hope all is well with you. Thank you for being my friend. I will either call or write again soon.
December 21, 2008
We took one more trip in October before we had the motorhome winterized in preparation for traveling again in March. In October, we went back to visit family in Marietta, Georgia, and then to Myrtle Beach for several days. Last year Myrtle Beach was warm in November. Not this year; we were there during a three-day cold snap. We still enjoyed ourselves. We just dressed in layers and used the heat at night.
We attempted to stop the immunosuppressant drug, Tacrolimus. I took my last (!) dose on October 22. Oh well, I had to restart the drug on December 6, as the GVH in my mouth got worse. There is still a little sibling rivalry from the stem cell transplant. Other than the GVH, I am doing quite well.
This next part is unusual because I do not usually spend much time talking about my family. I feel a need to share with you the latest news about our grandson, Matthew. In 2000, just before I was diagnosed with Myelodysplastic Syndrome, our grandson, at age four, was diagnosed with a craniopharyngioma and had his first brain surgery in April of 2000. Radiation followed in September of 2000. By January 2006, the tumor cyst had increased in size and he had his second surgery in late February. A third surgery was performed in November 2006, with more radiation in January and February 2007. This year has carried Matthew through six additional surgeries both at Le Bonheur hospital in Memphis and Scottish Rite Hospital in Atlanta. The Ommaya reservoir was placed to periodically drain fluid from the cyst. After the September surgery, the nonmalignant tumor converted to a malignant tumor. Matthew will turn 13 on January 3, 2009, and will then begin chemotherapy. I mention all of this because I just want to share with you that Matthew is my role model and my hero. Matthews has experienced some vision loss, but has maintained his strength and his positive outlook. When I talk to him on the phone, I ask him how he is doing. He always responds with “great.” He has handled more in his thirteen years than most people experience in a lifetime. Matthew was approved to receive a wish from the Make-A-Wish Foundation this year and he and his family had a wonderful family experience in Hawaii. He was able to swim with the dolphins, visit Pearl Harbor, experience a luau, and snorkel in Hanauma Bay along with many other wonderful adventures. Matthew has taught me to maintain strength and a positive attitude. He has shared his love for art and music with me. He has shared his love for life with me. We have shared our own battles with cancer since 2000. It is almost 2009, and we are both still going strong. We will survive 2009 with many good experiences.
I have a second role model. That person is our oldest daughter, Kelli. She has been the “glue” that holds the two generations together. She is a very caring and strong individual who has put both of us first in our journey through and battle with cancer. She puts her family first, but still has time to help others. She is a very giving person. I feel extremely honored to have her for a daughter.
I have just one further request, dear friend. Please visit Matthew’s Carepage. You have followed my journey so lovingly, please follow his journey at http://www.carepages.com/carepages/MatthewJTracy I will try to send you another letter in the first part of 2009.
I hope you have a wonderful holiday season with family and friends. Take time to count your blessings. Hug someone special…..always a hug for children.