February 12, 2005
I checked the date of my last letter, and I realized it was dated November 26. The last couple of months were very busy. Kim and Tyler (age 6) were here for Christmas and I am not sure what happened to January.
I have done quite well, but the GVH (graft vs. host) of the mouth still exists. My mouth stopped hurting; I just have not been able to taste much. The taste buds for salt and sweets function well. My meals have consisted of apple juice, waffles (blueberry), cream soups, Ensure, roasted chicken and desserts (cheesecake, pumpkin pie, milk shakes, and peanut butter cups). I have tried other foods that I cook for Ross. The best part has been eating chocolate. My weight has remained steady at 100 pounds. I have had a lot more energy, and am generally happy with life. I have continued the blood treatments every other week. I have actually enjoyed going to the clinic as I think of the doctors and nurses as friends and family. I must wear a mask when entering the hospital, but can take it off after entering the clinic. I continue to use magic markers and to decorate each mask so they coordinate with my outfits
I had another bone marrow biopsy. As usual, while under the drugs, I talked. I entertained them, but I cannot repeat what I talked about. I was determined before the procedure to keep my mouth shut, but it did not work. I had the procedure at 11:30 in the morning and was still dopey at 4:00 in the afternoon.
More big events take place in March. I will be 65 and am very happy with the upcoming birthday. Then on March 15, I have my re-birthday number two (two years since transplant and cure). The re-birthday makes the 65 possible. I was diagnosed in June of 2000 with Myelodysplasia (blood cancer), and today there are no signs of the disease as I have a new blood system. My younger sister told me that we retire so we have more time to visit the doctors.
I have been making jewelry again and just finished crocheting a poncho. I do quite a bit of baking and take cakes to the clinic every 4 to 6 weeks. I still enjoy shopping. The only problem with shopping is that I must always purchase something.
Time for a little rest. I will write again later.
March 18, 2005
So far, this has been and will continue to be a wonderful month. I am now on Medicare and turned two this past Tuesday. On my second re-birthday, I called my older sister and thanked her for her gift of life (stem cells). I still go to the clinic weekly and have Photopheresis (blood treatments for GVH) every other week. All the reports have been good and so is the shopping. We have a new Kohl's department store near here, and I have already checked it out.
I went to the grocery store with Ross on Monday so I could see if there was anything new that I might be able to eat. The taste buds may be a little better, but softer foods are easiest to eat. I have discovered Sushi rice and use it in a variety of fish and vegetable dishes. Because I only weight 100 pounds, I have a feast on cheesecake and pies. Chocolate chip cookies are good if dunked in my tea. It is a good thing that I eat to live and not live to eat. I think I must live to eat chocolate.
Spring is finally here, I think - rain and snow yesterday and 60 and sun today. I did some cook-ahead foods (cheesecake, potato salad and macaroni and cheese) today as Kelli and her family will be here tomorrow and stay until Monday. I have not seen them since July. Of course, Matthew (age 9) will remember me, but I am not sure about Cameron, as he will be two in April. We bought some toys in the hope that Cameron can be bribed to come to me.
Kimberly and Tyler will be here for four days the following week. We try to plan one activity so Ross can spend time entertaining the boys (Matthew and Tyler).
Life has been fun, especially so because of good friends, family, doctors and nurses. My nurse said I should be the poster "child" for stem cell transplants. The doctor in Apheresis sang "Happy Birthday" and gave me little apple pies and peanut butter cups. I told her she was my "junque food" sister as she also thinks that chocolate is a very important food. I took the doctors and nurses in the clinic a plate of re-birthday cookies on my two-year anniversary and my birthday cake on my real birthday. I really do have a fun life. Everyone is so friendly and caring.
I do very little housework. In fact, I am doing this letter because Ross is scrubbing the kitchen floor. I usually watch TV in the evening in my favorite chair in the kitchen. Speaking of the kitchen, Ross is now making a few changes in it. He is installing additional cabinets and a work surface. I can store away all my crafty stuff and have a work surface in front of the window where I can craft and watch the busy squirrels trying to attack the bird feeders. He has already painted and installed new ceiling fixtures.
I have started to crochet again and in the last 5 weeks, I have made six ponchos and three blankets. I found the Martha Stewart poncho on the Internet and plan to make one. Both girls have asked for another poncho. Next, it will be back to the jewelry. I told a friend that there are not enough hours in the day to get everything done.
April 26, 2005
I am still doing well. I still go to the clinic weekly and have Photopheresis every other week. All the reports are still good.
Both girls and their families have been here for wonderful visits. I had time to spoil the grandsons. Cameron had not seen his Grandma Shirley for 8 months. It did not take him long to warm up to me. I think talking to him on the telephone helps. Of course, it helped that I could get down on the floor and play with him (it was also good that I could get back up). Matthew (9) and Tyler (7) were a pleasure, and they have not outgrown hugs. I am already looking forward to more visits.
I am still shopping!!! Yesterday, we went to Michael's and to the mall. I did walk from Hecht's to Dillard's at the other end of the mall. Of course, I had to buy something at both stores.
Two weeks ago, I taught myself to knit and in three days had completed a scarf out of boa yarn. I did buy more yarn yesterday, but have vowed to wait at least a week to start knitting again. I did crochet a Martha Stewart poncho in two days. Actually, I decided that I preferred crocheting to knitting.
The kitchen is finished and the crafty "crape¢" is in the cabinets. We ordered a home office chair and now I am ready to start back working with clay while watching the birds and squirrels. The advantage is that I will not have to clean the table before meals.
To keep busy, Ross has repainted the downstairs bedroom. Next, he will install laminate flooring. I must start thinking of the next project for him. He had already put new flooring in two upstairs bedrooms while I was confined to the downstairs bedroom.
More good news, I have added special dark chocolate and peanut butter back into my diet. I have finally gained a pound; up to 101. The doctors and nurses are pleased with my progress and are rewarding me by scheduling another bone marrow biopsy for May 17. The shots of Enbrel in the stomach end on May 3. I hope that they will start reducing some of the meds in the next few weeks.
Spring has arrived and the azaleas are beautiful (the old plants and the 19 new plants). Ross is the "master" gardener and I am the supervisor. I enjoy supervising!!!! Actually, I am quite bossy.
I hope all is well with you. Enjoy this beautiful spring! Enjoy life!
December 27, 2005
A lot has happened between April and the end of November 2005. Throughout this period, my health has continued to improve. The medical reports and biopsies are all good. I have maintained a weight of 105 to 108 pounds and remain active.
Our children and grandchildren visited us. Our big purchase was a 30-foot Coachman Motorhome. We took a trial run trip to Williamsburg to determine what and how to pack. At the beginning of October, we left for a three-week road trip to visit my sister (donor) in Arizona. We thoroughly enjoyed the trip. I would recommend a motorhome to anyone with a medical condition that affects the immune system (mine because of meds). It was nice to take our own environment with us. We knew that our lodging was germ free. I could control the food preparation. I called it “sanitation on wheels”. I did call Nurse Judy on the second day as I had the need for reassurance as we were increasing the distance from the clinic. It was probably very much like a kindergartner on the first day at school.
In November, we took the motorhome to Georgia to visit children and grandchildren. This was our first trip to Georgia in over 5 years. It is wonderful to be able to travel again.
Our son visited from California in September, and we had family here for Christmas.
About a week before Christmas, I did hit another little bump in the road. I had the return of GVH (graft vs. host) of the mouth. It returns as a mouth full of blisters that make eating difficult. So, it was back to cream soup routine. I eat breakfast and can tolerate roasted chicken for dinner. One great thing is Folger’s Vanilla Cappuccino made with milk – good protein source. I have now had the GVH for 6 weeks. My doctor has sent my records to Johns Hopkin’s Hospital to a GVH specialist. We are waiting to hear from the specialist, and we will probably be going there for help in planning a new course of treatment. If it is a chemotherapy treatment, I will refuse it. That treatment could cause me more serious problems than the GVH. The treatment cannot include Prednisone as it wipes out the leg muscles and increase blood sugar to the point of needing insulin. I refuse to spend my time in a wheelchair. This bout of GVH has affected eating, but not shopping and generally enjoying life.
I still stay active…shopping, cooking, crafts, talking on the telephone, etc. I am very fortunate. In March, I will be three years out of transplant. I will celebrate my 66th birthday and my 3rd re-birthday. The key to my success is wonderful doctors and nurses, family, friends, and self-determination.
I hope you had a wonderful Christmas.