March 2, 2004
January 8, 2004….I was no longer receiving physical therapy. I made one trip upstairs each day. I relied on the railings to make the trip. At the top of the stairs, the railing ended even with the top step. Ross added a small railing so I could drag up the last step. I had stopped taking insulin before Christmas. The high blood sugars left as quickly as they arrived.
Remember when I had the high iron levels because of the numerous blood transfusions. I had my first phlebotomy. I am now a producer of blood, so they have started to reduce the iron levels in the blood by removing a unit of blood every other week. The blood cannot be a donation because of the drugs (medicine) in my system, but it can be used in research.
The other day, I had a piece of fried chicken, the first since February of 2003.
Houseplants are not allowed for transplant patients. A friend has had my plants since January of 2003. I asked the nurse when I could have them back. The only answer was "not anytime soon". There was one special plant that I really wanted to have in my home. It was an unusual peace lily with green blooms. It was given to me when my father passed in 1989. I did not know that it was a peace lily, as it did not bloom until the day I was diagnosed with Myelodysplasia in 2000. In my mind, that bloom had a special meaning.
I talked with my Nurse Judy. If I continue to progress, I will meet a goal that I set on transplant day (March 15, 2003). I will be able to go to Marietta, Georgia, in May to walk the survivor's lap with my grandson in the Relay for Life. Whenever I think about the opportunity to walk with him, I get a tear in each eye. I must continue to work on endurance in walking.
I knew that I was getting better because I started working with clay again. I had not made any jewelry since my sisters were here last February (2003). I made some pins and a couple of necklaces. It felt good to be working with the clay again, but it did cause a "little" clutter in the kitchen.
February 7, 2004….I no longer check my blood sugar levels. They had been normal since mid-December. A square of special dark chocolate after dinner provided a special treat.
The blood treatment (Photopheresis) continued to change the white cells so I should not have any more graft vs. host disease (GVH) or should not have the need for any future Prednisone. At one point, I had the record time of 2 hours and 22 minutes. Then a young man broke the record and an eighteen-year-old girl broke his record at 2 hours and 11 minutes. Well, I fooled them; the old lady finished the process in 2 hours and 8 minutes. My sister asked if there was a prize — just bragging rights.
I finish the immuno-suppressants in about three weeks. I have really enjoyed my clinic visits; the doctors and nurses are a second family. The visits are my weekly social event.
Fried Chicken became a Friday ritual. Ukrop’s fried chicken and potato wedges!!! Hmmmm!!!
On February 28, we went to the Bone Marrow Transplant Reunion in Richmond. The attire for the evening was either casual or tropical; I went casual. There must have been about 175 people there with at least 70 stem cell transplant survivors. The rest were guests, doctors, nurses, and other staff members. When we first arrived, we had our pictures taken. They were projected on a screen during the evening as a slide show, (so Prednisone, chubby cheeks had her face on the screen more than a few times.) They served heavy appetizers, provided musical entertainment and three doctors and three patients spoke. The evening concluded with chatting among the patients, guests, and medical staff. The reunion started at 6:30 and ended at 9:00. That was past my bedtime.
I have had four units of blood removed and my ferritin (iron) levels have dropped from 1450 to 450. A few more units and my count should be below the normal level of 50. I was getting Procrit shots to boost my hemoglobin levels, but the shots have been stopped since my hemoglobin was 16.5, above normal.
Kelli, Kim and the three grandsons were here the weekend of February 14. It was a wonderful weekend. We enjoyed the grandsons. Ross took Matthew and Tyler shopping on Saturday afternoon while Kelli, Kim and I played with Cameron. Saturday evening we sat around the kitchen table after the boys were in bed and we laughed until 11:00. It was by far one of the best weekends in a long time. It was wonderful having them here. I really enjoyed myself because my energy level was high.
March 1st was another clinic day. I thought that it would just involve my monthly chest X-ray and blood work. Wrong!!! I was informed that it was bone marrow biopsy time again. My last one was at the beginning of November during my last hospital stay. I hope that the drugs will put me into a deep la la land
I planned to take them my birthday cake (not yet baked) as a thank you for getting me to birthday number 64 on March 2. I have two birthdays in March. March 15 is my first re-birthday. I told Ross that I expected two gifts. I still get tears in both eyes when I think of that March 15 event. The tears are sentimental for everything my sisters did for me (Charlotte and her stem cells and Patti and her support), my family support, and the expertise of the doctors and their staff. The doctors and nurses are like an extended family. I actually look forward to the clinic visits.
Last week was busy. I had my clinic visit on Monday. I went shopping (the masked woman) on Tuesday (Peeble's sale, new glasses and stuff from the drug store to make my face "look younger"). On Wednesday, we went to the mall because Dillard's was having a sale. My sisters know how I do not like to miss a sale; I bought three shirts, as I must wear long sleeves whenever I am outside. Thursday and Friday were for rest, and I made a necklace to wear Saturday to the reunion.
I am still looking forward to our trip to Georgia the first weekend in May. I will be in the relay for life with Matthew on that Friday evening. On Saturday, we will go to church with Kelli, Mike and the boys, as Matthew will have his first communion. On Sunday morning, we will drive to North Carolina and spend the afternoon with Kim and Tyler. We will head home on that Monday morning. I have not been out of the area since 2001, so this is quite an event for me.
Must get a few things done. I miss not seeing you.
April 19, 2004
April 15, 2004….I hit another bump in the road. The bump landed me at MCV hospital in a hospital bed. Maybe it was not a bump in the road, but it was definitely a pothole. The doctors finally put me back in for heavy breathing (actually extreme difficulty after any physical movement). After numerous tests, it was determined that my blood albumen was too low, causing the body tissues to retain too much fluid. I had swelling in my legs all the way to the sacs around the lungs. The fluid pressed against the right lung causing it to be shaped like a pancake (seen on a CT scan). The pressure would not allow the lung to inflate. With IVs of Albumen and Lasiks, the problem should be corrected. The above was a result of care by the lung team (three doctors). Congestive heart failure was not fun.
NOTE: A good picture would have been of the three doctors. The first looked at the infection in my mouth with a flashlight and the other two were lined up behind the first. They each leaned over a little so they could all see in my mouth. From my point of view, it was very comical.
Now the bone marrow team – I was placed back on my favorite, Prednisone. I was also placed on anti this and anti that. A new drug was started to shorten the time on Prednisone. After 13 pills, a lung puff and a mouth rinse, I was ready for the Ambien and morphine.
I know this may all sound daunting, but it really was not. I asked the doctor my favorite question: “Will I make it?" He said I was not going anywhere. I was told to plan on my trip to Georgia.
I was admitted on Friday, and thought I would only be in the hospital through the weekend. When I went for my clinic visit, I had my bag packed and in the car. I was prepared to be admitted. Ross came daily with frozen entrees for my dinners, as the hospital food was not among my favorites. Ross spent each day with me, and I greatly appreciate his love and care.
The lower dosage Prednisone elevated my blood sugar levels, so I was put back on insulin and physical therapy to strengthen my muscles before the Prednisone tried to do its job.
I did some intense thinking while confined to the hospital bed, and I am really blessed. I have a loving husband, children, and grandchildren. I have loving sisters, their spouses and children. I have Kelli's husband, Mike and Scott's girlfriend, Renee. I can add the friends that still stop by and call as my extended family and are very dear to me. I am blessed with each month (13 now) since the transplant. That is an additional month at a time to enjoy my family, my friends, my hobbies and shopping! I am blessed to have had two caring giving sisters; they have become a bigger part of my life. Ross and I have become quite a team. I may start something like dinner preparation and become too tired and he is right there to help or finish. I get what I need with no complaints and no questions asked. He is a true blessing. I am blessed to be able to bounce back and see the real me. I am blessed because I can now look to a higher being and say thank you. I am blessed as each month means more time to get things done. The most important is seeing those three grandsons grow.
I will go home soon.
April 29, 2004
April 20, 2004….Well, I did not go home from the hospital as I woke up to chills and a fever of 101.7. I was diagnosed with pneumonia in the good old right lung. I guess I hit another pothole on the road to recovery. The doctor said I should be better in a few days. I had pain in the right side; I was prepared to deal with it, but they gave me a little morphine.
April 28, 2004, I came home from the hospital Monday afternoon with oxygen. I am getting stronger at home. I still have to go to the clinic twice this week. I do have an antibiotic IV three times a day at home to get rid of the Psuedomonas that I got in the hospital. I am going to be fine when the strength is back and Prednisone is gone. I never really knew how very sick I was while in the hospital. I was just so determined that I could fight anything. I guess some thought that this required too much fight. I was up to it; I have too many things that I still want to do.
The first thing I must do is nap. More later.
July 17, 2004
May 3, 2004, I guess you have figured out by now that I did not walk with Matthew in the survivor’s lap in the Relay for Life in Cobb County, Georgia. Kelli walked in honor of three people. She walked for Matthew, for me, and for Mike's aunt. I met her at Kelli's wedding and in my own way she has been in my prayers. I am proud of Kelli; she even had some Cub and Boy Scouts walking with her. I may have been in Virginia, but my heart was with her in Georgia.
I progressed, except I dropped more weight. I have rosy cheeks and look healthy, but I only weigh 124 pounds. I never thought I would say that I needed to gain about 5 pounds.
May 24, 2004….I would have written sooner but they put me back on all these medications, and I have been fighting Prednisone and some other nasty drugs that mess with me - shaking, dizziness, blood sugar, sleepiness, weakness, etc. It made using the keyboard difficult.
My attitude has been fine, and I have maintained my sense of humor. I guess I did not say that while I was in the hospital, I was in ICU for 16 of the 17 days. It does not seem possible that I have been home for 4 weeks. When I got home, we had to continue with the antibiotic IV's for an infection in one of my Hickman catheter lines. Well, one morning Ross hooked me up to the IV and I did the usual. I rolled over on my side and went to sleep. About ten minutes later, I woke up and felt very strange!!!!! I was lying in a pool of blood; I had somehow popped the tubing and was bleeding in the bed. We turned off the lines and cleaned everything up. I called the clinic and was told I had done everything the right way. The next day at the clinic, they did a blood check and calculated that I had lost one and one-half pints of blood. I did not have a hospital phlebotomy to remove the excess iron. I had already done my share at home in an unconventional way. Fun! Fun! The only thing that angered me was that we had to buy a new down mattress cover.
I have an IV every evening because of low magnesium. It only takes about an hour. I stay on my back and remain observant. We are gradually lowering the Prednisone dosage, but it has already affected my legs with some weakness and one of the drugs gives me blurry vision. As soon as the Prednisone is gone, my blood sugar will return to normal, and I will be off the insulin.
My weight did drop to 121 pounds, but I am now at 128. They dried me out too much, and I had to go to the clinic three days in a row for fluids. I think I am now where I am supposed to be. I would like to get to 135. I never thought I would want to gain weight. The purple-red spots/bruising on my arms are from the Prednisone. That drug has also caused some hair loss.
Ross put some impatiens in the eight pots around the patio and Mary brought me two nice tomato plants to put in the large pots next to the house. I have about eight blossoms on the tomato plants. She also brought freshly picked strawberries. My taste buds are almost non-existent. I can taste some fruits and chocolate. I am eating for the protein, not for the taste. The doctor thinks that my taste buds will return after some of the drugs are stopped or within a year!!!!!! I have enjoyed the Healthy Choice 2-gram sugar chocolate ice cream bars. I have at least two a day.
A couple of weeks ago, Kim and Tyler (age 6) came for Mother's Day weekend. Tyler was fascinated with my medical care. He had to watch the shots, etc. He watched while his "Poppy B" gave the shots. Tyler and his "Poppy" went shopping and out to lunch. I really enjoyed their visit.
Well, I have gotten stronger each day as the drug dosage is reduced. I will soon be back to shopping. Right now, I must enjoy being lazy. I called the department store and got permission for Ross to use my discount coupons and credit card. I certainly could not miss the sales.
July 16, 2004….I finally finished the Prednisone, and my blood sugar returned to normal. The Prednisone problems continue with the reduced muscle strength making the stairs difficult. I have had to return to the downstairs bedroom. I had another round of fluid in the lungs, but we caught it early. When I went for my weekly checkup on Wednesday, the doctor said my lungs sounded clear. The shortness of breath has improved, so I do not need to use oxygen as often.
My hands still shake at various times throughout the day from one of the drugs. The drug dosage has been gradually reduced, so many of these little problems will go away. I have not been able to work with clay as my hands might start shaking and I would be flinging the clay beads all over the kitchen. I have experienced a little boredom.
We were very pleased with my last series of blood tests checking the iron levels from all those years of transfusions. Finally, the ferritin levels (iron) are down, and I no longer need shots to build the blood followed by the phlebotomy. I have not had a phlebotomy since I did the big one at home in May.
Food looks good, but I still cannot taste much of it. I enjoy fresh corn, peanut butter, applesauce, and chocolate. I cannot taste much of anything else. Ross helps with the meal preparation. My meals are simple….juice and cereal for breakfast….an ear of corn, cottage cheese and homemade applesauce for dinner. I have been drinking four Ensures each day. The best is the 10:00 PM snack....peanut butter and a square of Hershey's special dark chocolate. No problems eating the chocolate as I only weigh 120 pounds.
Now that I am off the Prednisone and my lungs are clear, I need to start exercising more frequently. I have exercised my computer fingers enough, and must close now. Take care of yourself, and I look forward to a visit from you.
November 1, 2004
I noticed that I had not written to you since July. The last half of July and August were busy months.
Regarding my health, all my blood tests have been fine. I still have some reactions to the medications. I am light-headed in the evenings; I was using the term "empty-headed", but too many people were agreeing with me!!!! I still do not have many taste buds, but am trying to eat. I can taste sweet corn, low acid orange juice, ice cream, peanut butter and applesauce. Tuesday I did eat most of an Arby's stuffed baked potato; it tasted better than the ones fixed at home. I now have to keep track of everything I eat because I only weigh 107 pounds. The doctors seem to think the weight loss may be related to the medications.
My hands no longer shake, as I will be finished with the immuno-suppressant (gradual reduction) in 10 days. I no longer need the magnesium by IV at home, as my levels returned to normal. As soon as I finish the immuno-suppressant, we will start reducing another medication. In about six months, I will be able to start my "baby shots".
I am now 17 1/2 months out of transplant and according to the doctors; I am doing quite well. The doctors and nurses told me that I looked good, just a little thin. I am so happy that I was able to have the transplant. I plan to be around for another 10 years.
I did enjoy visits from my daughters, grandsons, and son-in-law Mike. Kelli, Mike, Matthew and Cameron came for a visit from July 24 to July 26. I really enjoyed their visit and wish I could travel to see them.
Kim and Tyler came on July 30, and Kim went back home on August 1. Tyler (6) stayed here until August 4 when his "Poppy B" took him halfway to meet Kim. Ross took Tyler to play Putt-Putt Golf, and Tyler loved the water blaster boats. He especially liked spraying his "Poppy B" with water. We tried to plan something for the two of them to do each afternoon. While they were gone, I napped.
On August 8, we had the “big event”. I had decided to go shopping, so I got up at 8:00 to shower before breakfast. I usually shower after breakfast. I had showered and was standing in front of the sink. I started to feel light-headed (not unusual), then it became more intense. I thought it seemed strange to feel so bad. The next thing I remembered was hitting my head on the doorframe. I have no idea how I ended up on my back on the floor. Now I know what it feels like to pass out. I called Ross, but naturally, he could not get in to help me because I was blocking the door. At that point, I thought the whole thing was funny and started laughing. I still had the problem with my knees, so I remembered how the therapist taught me to get up from the floor if I ever fell. It worked. I crawled to the commode, put my arms across the seat and managed to pull myself up with my arms. I was quite angry because I decided that I better not go shopping. I told the nurse and doctor about "The Big Event" when I went on the ninth. The results were bruised knees, a few bruises on my back and a sore spot on the side of my head. I guess the cause was lack of food or becoming overheated in the shower. I did manage to go shopping of the 10th.
On the 17th, I had my immunoglobulin IV and again I had a reaction to the IV. The nurse gave me Demerol through IV to stop the reaction. At that point, I saw six nurses instead of the actual three. I will no longer get immunoglobulin. The doctor hopes to find an alternative. I have planned to be stubborn and keep my levels high enough so I will not have to be given the IV. I was supposed to go back on the 31st but had to wait until September 1 because of the road flooding after the hurricane. When I went on Wednesday, I learned it was time for another bone marrow biopsy. I must have them every three months. It does not hurt as they give me loopy drugs before they begin. The only problem is my mouth; I talk continuously and tell them all sorts of things. I cannot put in writing what comes from my mouth. My goal is to mumble.
I started making clay jewelry again as my hands do not shake, and messy the kitchen table has returned with clay, tools, and other equipment. I have done more towards meal preparation (wearing latex gloves) and doing little things around the house. I have been very happy that I am not allowed to dust, vacuum, or do general cleaning. Ross does all the major cleaning. I plan to keep it that way forever…..
September 25,2004….I have had a few more accomplishments. I no longer weigh 107 pounds; I am up to 108.
I received the results of my last bone marrow biopsy and everything is fine. The report still shows that the transplant was a success. It has now been over 18 months. I did talk continuously during the biopsy because of the drugs. I had no idea of what I said until the nurse told me. I turned my head during the procedure and asked the doctor if he liked looking at "butts" all day. The nurse said he did not respond. I did make another statement, but I will not put that one in writing…
I have been going to Photopheresis (blood altering process) every other month instead of monthly. Clinic visits are now every other week. The weekly shots of Enbrel have been stopped and another drug will end in three weeks.
The doctor said that I looked good and he was not concerned about the weight. One of the drugs (castor oil based Sporanox) may be causing the problem and it may be stopped in three months instead of six months.
I am doing a little more walking. We walked through Walgreen's, Target and the Dollar Tree last weekend. Since I had Photopheresis this Thursday and Friday, I decided it was best to stay home and be extra lazy on Saturday. Wednesday, my friend, Debbie, came over in the afternoon. I enjoyed having company.
I have tried to do a little more. I shopped for the exercise. For example, one day we went to the new Dollar Tree and Books-a-Million in Colonial Heights. Then we came home for lunch and went to Sam's. We were almost finished when my legs told me that I was "finished". I left Ross to check out while I "checked out" to the car for water and a rest.
On October 5, I went to the clinic, and Dr. Chung said I was doing great. He was no longer concerned about my weight because all my labs and blood chemistries were great. I did gain weight; I am up to 109…a pound at a time.
Dr. McCarty told me the following in case my "ears were burning": he would be speaking at an eastern regional conference in Maryland on November 11 and again at a national conference in February. His topic was going to be "me", and he asked permission to use the recipient/donor picture that I had given him in 2003 before the transplant. I should feel good about being the first in the nation in this clinical trial with Myelodysplasia (a blood cancer); I am also the longest survivor and totally cured. I thanked the doctor, but I am most thankful for my two sisters.
We put a small refrigerator and microwave upstairs because I have taken to waking up between 2:00 and 3:00 in the morning and being hungry. I usually have a cup of decaf tea and Colby jack cheese. I have learned not to eat Hershey's special dark chocolate during the night because chocolate on the pillow is not appealing.
Last weekend, we went to the Oak Grove Methodist Church Helping Hands' Carnival. Each year, they provide support for youth with cancer or injuries. Last year, they provided financial support for the little two-year old that had a stem-cell transplant at about the same time as mine. I had wanted to attend last October, but I was in the hospital. We went this year. This year they supported a 16 month-old boy with a rare bone marrow disease, a 17 year-old brain tumor survivor, and a 15 year-old girl injured in an automobile accident. They raised over $4000.00 this year. Next year, I plan to provide some of my hand-made jewelry for the silent auction.
At 5:30 AM on Monday morning, Ross got in line for the flu shot. The store opened at 7:00 AM. He was number 312 out of 450 doses available. Some people got in line at 7:30 last night. I cannot get the flu shot, as I do not have an immune system. I should be able to start my "baby shots" in April of next year. It will be "baby shots" for a 65 year-old "baby".
Kimberly and Tyler arrived for the weekend. Tyler went shopping with his Poppy B. to get Kim's Christmas presents, out to lunch and then selected a pumpkin from the pumpkin patch. Kim and I went shopping. I decided not to cook this time, and Ross went out to get our dinner.
Speaking of cooking, last week, my stove decided it had a mind of its own. I put a roast in the oven at 350 degrees and went for a nap while Ross went shopping. Ross came home and smelled something hot. The oven had a mind of its own and switched to broil. We turned off the oven, but the broiler stayed on. We had to use the circuit breaker. It would have taken ten days and $250.00 for a repair. We bought a new stove, only with a smooth cooktop and a convection oven.
I had to find a new "to do" list as the Christmas shopping has been completed, the gifts wrapped and ready to mail except for Kim and Tyler’s gifts. They will be here for Christmas.
I will write again soon. Take care of yourself. Thank you for being my friend.
November 26, 2004
Since my last letter, I have done a little more, especially shopping for exercise!!! I have slowed a little with another bout with GVH (graft vs. host disease). I have GVH of the skin and mouth. Fortunately, the only part of my skin that hurts is my hands and feet, but that limits me in the amount of walking and using my hands for working with clay. I am back on the immunosuppressants, the ones that cause my hands to shake. No shaking yet! The GVH of the mouth makes eating difficult; it involves eating cream soups and drinking Ensure. The doctors have said that the GVH will eventually go away. My immune system and Charlotte's immune system will eventually live in harmony. I now go back to the clinic weekly and have Photopheresis (blood altering treatment) every other week. Unfortunately, I am down to 97 pounds, so weight gain is necessary. No baby shots in the near future.
Luckily, our Christmas shopping is complete and the cards are addressed and ready to mail. I am now looking forward to the next holiday. The snowman that Ross built is on the front steps and my wreath is on the front door. We will put up the LITTLE tree on the school desk in the corner tomorrow.
One nurse told me to put turkey, dressing and gravy in the blender and drink it. I became irritated at the number of blender suggestions that she gave me. Never would I try any of it. I would rather drink Ensure and Carnation Instant Breakfast milkshakes.
Scott leaves to return to California at 8:00 tomorrow morning. He arrived here last Saturday and had a working holiday. He worked here from the house on Monday, Tuesday, and Wednesday. Wednesday evening and Thursday morning, we had our Scrabble games. He thought he would beat me. Wrong!!!! He always knew that I was competitive and stubborn. It has been wonderful having him here.
I talked with both girls and they are fine. Kim and Tyler (age 6) will be here for Christmas. I am also looking forward to that visit.
Dr. McCarty did speak about me at an eastern regional medical conference on November 2. He even shared the picture of the three sisters. I told my sisters that we were now famous. He will be speaking at another conference in January and at an international conference in February. He also showed me the chapter in a recently published book about Myelodysplasia. Part of the chapter is about me. I asked for a copy when he had a chance to copy it.
If I do not write again before Christmas, have a happy and healthy holiday.