April 5, 2009
Wow! It has been a long time since my last letter. I will begin with a brief update on my medical status. The GVH of the mouth and eyes continue to exist. I do fine with the GVH of the mouth as long as I can remember that there is more to life than eating. I eat what I can tolerate and then drink four Ensures each day. It seems to work for me. Since I have a list of everything I can eat, I designed a brochure for the clinic about foods that easily tolerated based on my own experiences. I even included a few recipes. For now, eye drops, low lighting, and sunglasses help the GVH of the eyes.
We bought an elliptical cross trainer to help me increase muscle strength in my upper legs. I thought the weakness was permanent and caused by Prednisone. Dr. Chung said the weakness did not have to be permanent. Well, we got the cross trainer ……now that is work. At first, I could only exercise for two minutes, but I have increased it to 15 minutes. Stairs are becoming easier to climb. It is much easier to get in the car. Next a marathon!
Kimberly and grandson, Tyler, spent Christmas with us. It is such a joy to have family spend their holiday time with us. They came from North Carolina to Virginia by train. This eliminates the holiday traffic. They came with one packed suitcase and returned with two. Space bags are great for packing after Christmas.
In March, I reached two goals. I turned 69, and I became a six-year stem cell transplant survivor. I accomplished my goal through my own stubbornness and a little help from the medical profession. It did not hurt to have supportive family and friends.
In March, we traveled to Georgia to visit our daughter, Kelli, and her family. I was happy to spend time with our grandchildren, Matthew and Cameron. Kimberly and Tyler joined us at Kelli’s home.
Matthew had chemotherapy for the malignant brain tumor. I cannot go into detail about his condition in this letter as I have difficulty putting my feelings into words. Please, please read about his journey and supporting him by going to http://www.carepages.com/carepages/MatthewJTracy. By logging in and creating your password, you will be adding to the growing community of those who care. Matthew continues to be my role model. He continues to fight a courageous battle and is an inspiration to all who know him.
After leaving Georgia, we traveled to Orange Beach, Alabama. While there, we had a wonderful visit with a high school friend and her husband. I had not seen Linda in 47 years. We played together as pre-school children, graduated from high school together, and Linda cut the cake at my wedding in 1962. Several years ago, we renewed our friendship via e-mail. Yes, we still like each other.
After a couple of days in Alabama, we continued in the motorhome to Fontainebleau State Park, just north of New Orleans. We drove the previously towed car to Slidell where we met my second cousins for the first time. We had communicated via e-mail as we worked on our family trees, but had never met. After meeting, sharing family information, and a great home-cooked meal, we felt that we had always known each other.
We drove across the 24-mile Lake Ponchartrain Causeway into New Orleans. We set the GPS for a location in the French Quarter. We took a carriage ride, did our own walking tour, had coffee and beignet at the Café Du Monde, and walked over the trolley tracks to the Mississippi River. We did not stay to experience the nightlife, as it would have been past my bedtime. Therefore, I could not get drunk (against doctor’s orders) and dance on the tables. We had a great time. I wish we could have stayed longer.
We have planned another trip to Georgia. We will be returning there in May and will be staying for six days. I will be sending another letter in June. Remember to visit Matthew’s carepage.
Thank you for following our journeys. Continue to count your blessings. Hug someone special each day…..always a hug for children.
Sunday, May 10, 2009
This is the most difficult update that I have ever written to you. This Mother’s Day at 4:30 AM, my precious grandson, Matthew, lost his courageous battle with cancer. He left peacefully and now is in a better place. I will miss him so very much. I feel like a part of me is missing. We began our battles with cancer together. His took a different path this past September. I thought we would continue our battles together.
I am so very thankful for all the support that you have given through your prayers, kind words, and understanding. We are all better people for having known Matthew. Our love for him will continue to impact our lives.
Saturday, August 29, 2009
I have not written since May 10. That day and the days since have been the most difficult in my life. I cannot write anything more about my precious grandson as the tears will start once again. I miss Matthew deeply, and he still has a very important place in my heart. Just remember to continue to hug your children and grandchildren.
In June, we went to a beautiful RV resort on Lake Norman in North Carolina just north of Charlotte. Aside from my yearly cold, it was good to spend time with our grandson, Tyler. (More about the cold later.) Tyler spent the days with us with some of it spent fishing. Kim and Michael joined us for the evening meals. I even savored the taste of freshly caught wide-mouthed bass.
In mid-July, Scott and grandson Kyle came to visit from California. Before coming here, they spent time with both sisters and their families. Kyle will be three in September. We had a great time. Kyle did not get into anything. In fact, his favorite activity was shutting doors. He even shut me inside of my closet.
In August, we traveled to Williamsburg for three days. Now that was my kind of road trip – 1 ½ hours each way in the motorhome. We really enjoy the beauty and relaxation of camping in the motorhome. It does get a little noisy when it rains, but it is peaceful noise. While we were in Williamsburg, I completed a 5-hour marathon…..that is a shopping marathon at the Prime Outlets. The only downside was my feet hurt for days and days.
Our next trip will be in October to North Carolina and Georgia. We will treasure our time with grandsons, Cameron and Tyler.
OK, now for the health update. I like to include this part, as I know of many MDS/transplant patients that read these letters. I will report the events in order of occurrence.
In early May, I completed my last Photopheresis blood treatment (separating the white cells from my blood and treating them to lessen the effects of GVH). There had been problems with the treatments since January. A different needle was used because of a manufacturing glitch. The problem with my treatments related to the blood draw. In May during one of my treatments, there was an occlusion (air) in the line. The line was flushed, the machine restarted, and then the problems began. Everything started spinning and I had to grip the sides of the infusion chair. After the spinning started, my vision became extremely distorted. The only way to describe it is to imagine millions of bubble-like structures racing across the visual field from left to right. The nurses reacted quickly by stopping the procedure, lowering my head and increasing fluids. The physician’s assistant from the Bone Marrow Transplant Clinic came to assist and blood samples were taken. I stayed in Pheresis for over an hour and then the nurse took me in a wheelchair to the Bone Marrow Transplant Clinic. After another hour in the clinic, I went home. Well, that was my last Photopheresis treatment ending a twice monthly treatment for the past 5 ½+ years. The cause of this reaction was unknown.
Well, the saga continues….In early June, I asked the doctor for a prescription for Restasis in the hopes it would relieve the GVH of my eyes. I should not have asked. I only used the drops for 3 days. The burning and irritation was so intense that I had to stop using them. I had every side affect listed on the circular. Maybe I should stop trying to “play” doctor. One of my nurses actually calls me Dr. Bulloch!
OK – now later in June, I got a cold! (Or something). I had an elevated temperature of less than 100.5, extremely sore throat and upper respiratory congestion. I contacted the clinic, and as it was probably viral, I was told to use Tylenol and push the fluids. After ten days, I received a prescription for Levaquin. This was the first time for that drug. I had to stop after two days because of a severe reaction.
For anyone with MDS followed by a stem cell transplant from a donor, please follow your treatments closely. See a specialist if needed. I was told that my eye problems were probably caused by GVH. Therefore, I just continued to use artificial tears for the dryness and burning. My eyes got so bad that there were many times when I had to just shut them, especially when outside on a sunny day while wearing sunglasses and a hat. In August, I asked for a referral to an Ophthalmologist specializing in GVH of the eye. Some patients had just recently started using eye drops made from their own blood serum. I had my eyes examined on August 19. I have severe scarring from past GVH and have active GVH. Because of the scarring, my tear ducts are partially blocked. There are three layers covering the eye – mucus, water, and oil. Without all three, the eyes become very dry and burn. The oil layer is very thin and as a result, the water (tears) dry too quickly. There is a drain in the inner corner of eye. The doctor put a plug in each drain to help the eyes stay moist longer. I am now using artificial tears hourly and Prednisone eyedrops four times a day. It may be that we can control the eye problems without using the specially formulated eye drops.
I had to return to the Ophthalmologist on the next day because one of the plugs was causing irritation. He removed the plug in the left eye and will replace it with a different type of plug on September 3. Now I have one dry eye and one almost normal eye. The next step will probably be to add Omega 3 oil to my diet to increase the oil layer on the eye. The doctor had seen eye improvement in just 24 hours.
I have gone into detail with this update because I feel it is so very important to be an advocate for yourself and others. If my experiences help only one person, I feel that I have accomplished my goal. I thought I was doing all that was important to maintain my health. I will continue to question and continue to research because I plan to continue my journey.
I hope that what I write helps others in their own personal journeys following stem cell transplants. The MDS cure was so very important in extending my life. I can deal with the little GVH bumps in the road. I do not want any sympathy for the GVH as I have the inner strength to handle those bumps.
So my friend, I am really doing quite well. I am now a six ½-year transplant survivor at the age of 69+. On a lighter note – I learned this summer that I can still hula-hoop. I can do 100 revolutions….so just call me “Hula Granny”!!!
Take care of yourself. Share your love with your family. It is the most treasured gift that we can give to others. Write back soon.
December 12, 2009
This has been a year of ups and downs; joys and sorrows. This has been a difficult year in dealing with intense emotions. We have survived the loss of our precious grandson on Mother’s Day, and our family bonds have become stronger. We each grieve in our own way, but we grieve with the knowledge that Matthew would have wanted us to be strong and continue his fight by supporting organizations with missions to eradicate childhood cancer. Please log on to http://www.carepages.com and visit the page for MatthewJTracy. Visit http://www.rallyfoundation.org. Matthew is one of many Rally Kids. Matthew is my hero. His parents are also my heroes as they are active in supporting others through their involvement in many organizations including “Make-a-Wish” foundation where Kelli has been the speaker for fundraisers.
I have written this section in detail as many MDS patients read my webpage. I have had some accomplishments and changes in my own life this year. In March, I turned the chronological age of 69 and the transplant age of 6. In March of 2010, I will become 70 and 7. I understand that for my age and a transplant recipient, it is remarkable. I no longer receive the twice monthly photopheresis treatments as I had a “terrible” reaction to the treatment in May.
In August, I had my first appointment with the most amazing ophthalmologist (Dr. Joseph Iuorno, MD, West End Ophthalmology, Richmond, Virginia). I have severe GVH scarring in both eyes and had some active GVH. By plugging both eye drains and using Prednisone eye drops, the active GVH is being controlled. My eyes feel 90% better and I can actually tolerate the lights being on and going outside on a sunny day. The continued problem is the eyelashes growing towards the eye; requiring lash removal every six weeks. We are now decreasing the eyedrops as continued use can cause glaucoma and cataracts. If my eye condition does not remain stable, then we may use the serum eye drops (made from my own blood serum). There really is some humor in all of this eye GVH. The ophthalmologist took a picture of my right eye to use for a class he is teaching. He said it was a perfect example of the turning inward of the lower lid and causing the eyelashes to grow towards the eyeball. I was so fascinated by the enlarged picture of the eye showing all the weird eyelashes. What helped make it weird was the fact that there was a light green residue next to the lid from the eye drops used before examining the eye. I asked him to e-mail me a copy and also e-mail my MCV doctor a picture. Well, just imagine a doctor opening his e-mail on a very large screen monitor, and there filling the screen is my magnified eyeball with 6 long lashes growing against it.
In November, patient records were updated to coincide with the new CDC guidelines. Darn! As a result, I had to have a pulmonary function test (no change since February.) I also had a CT scan of the lungs which showed some GVH. Since I am not symptomatic, I am now taking two drugs that have been found to help control the GVH (Azithromycin - three tabs a week and Singular nightly). I had a battery of blood tests including blood cultures, fungus cultures, iron panels (pre-transplant, I had iron overload and now my ferritin level is 36 with the normal range of 20 to 120), cholesterol, hemoglobin A1c, and the usual series of additional blood tests. The hemoglobin A1c was 6.1 with the normal range being 3.0 to 6.0. I am to see an endocrinologist in January, but I am not concerned as the American Diabetes Association recommends a level below 7.0 and the American Association of Endocrinologists recommends a level below 6.5.
We did travel in the motorhome this year. In March, we traveled to Georgia, Alabama, and Louisiana. In Georgia, we spent time with Kelli and her family and were joined by Kimberly and Tyler. You can read details of this visit in my April update. After leaving Georgia, we traveled to Orange Beach, Alabama, to visit a high school friend. After several days, we traveled to the New Orleans area visiting relatives in Slidell and touring New Orleans’ French Quarter. This trip held both joy and sadness.
We did return to Georgia in May following Mother’s day. We stayed in Georgia for about 5 days.
In June, we traveled to Lake Norman just north of Charlotte, NC. We enjoyed spending time with Kimberly, Michael and grandson, Tyler. This is where Grandma played pool for the first time in over 50 years. I looked like a pool player, but had a “hard” time getting the ball in the pocket. We did have a good laugh.
July travel consisted of an airport trip and being entertained by Kyle. Scott and Kyle (3) came for a visit from California. I really wanted to keep Kyle as he was so very active and loving.
August took us to Williamsburg for 3 days. I actually completed a 5-hour shopping marathon at a very large Prime Outlets shopping center.
In October, we returned to North Carolina and Georgia for a two week trip in the motorhome. We treasure our visits with the grandchildren. Fortunately, we traveled between the big storms and only experienced one very rainy day. Part of the campground in Georgia was closed from flooding the week before our arrival.
I continue to enjoy life. This year, I decided to give back more than in other years. This is probably because it has been an emotional year for us. We adopted two children from the Angel Tree. We really enjoyed Christmas shopping for them. One was a 9 year-old boy and the other was a 5 year-old girl. The only problem is that I will never have the opportunity to hug them.
I revised my brochure, “Eat to Live: The GVH Mouth”. It includes the type of foods that do not irritate the mouth. I also compiled the recipes that I use to stay healthy including recipes for using my new juicer. I gave copies of both to the post-transplant coordinator.
When I came home from the hospital six plus years ago, my older sister gave me a handmade fleece scarf type shawl with pockets and fringe. I have used it at night to keep my shoulders warm. This year, I decided to share with others. I made eight shawls and took them in holiday gift bags to MCV for the transplant patients that would be spending the holidays in the hospital. Thus the birth of “Shirley’s Shawls of Hope: Made with Love”. One of the eight shawls was for a 12 year-old girl. In one pocket we placed a package of Crayola Twisters and in the other pocket a sketch pad. I plan on continuing this gift of warmth.
You have been my dear friend throughout all these years. I treasure your friendship. So now here is my wish for you and your family. Enjoy your holidays. Please remember to share your blessings with others. A positive attitude makes life much easier, and I think it gives us longer lives. Love your family, share with others, and stay healthy.