March 14, 2003
Dear Friend,
At the end of January 2003, Charlotte came for two weeks. She had a complete physical, and Neupogen shots to boost her white cell count, which in turn forced more cells into the blood stream. To harvest the cells from the blood, one needle is usually placed in each arm. The blood is removed from one arm, filtered, and returned through the other arm. Her veins were not strong enough for this method and so they placed a catheter just above the collarbone for the process. This process usually takes two to three days. By day four, half of the stem cells needed were collected. The technicians froze the cells, the catheter was removed, and Charlotte went home to Michigan. The process has limits as the platelet count lowers with each day. The body must rebuild. She had been through quite an ordeal, but would not give up until the job was done. She came back at the end of February to repeat the process. By the end of the fourth day, enough cells and a few extras had been collected. My younger sister, Patti, flew up from Florida both times to help and provide the much needed sisterly support. We had several days together without treatment before they left on March 10. I checked into the Medical College of Virginia North Hospital in Richmond, Virginia, on the same date.
March 10th was a good day, After being admitted to the hospital, I gave blood, got hooked to multiple IV’s and received the first dose of chemotherapy. The chemotherapy left a terrible taste in the mouth. I cannot begin to describe the number of pills that I had to take each day, must have been between 15 and 20 maybe more. My day nurse, Darlene, had major problems getting the blood samples. It took several hours. One time as she left the room she mumbled, "She just got here, and she is already a problem." I found out later she was a military nurse, and I should have given blood on command. I decided I needed to make her my friend.
On March 11, Ross brought a 20" x 48" table to put the computer on. I also put my get-well cards on the wall and family pictures on the windowsill. He spent a couple hours setting up the table, etc. His next assignment involved making a door sign, “Shirley’s Room”.
I had another Chemotherapy treatment later in the day. I had to take another antibiotic because of a bug that showed up in one of the white cell cultures. It was either a germ or a contaminated culture.
Food restrictions were in place: no pepper, cheese, spices, orange juice, caffeine or chocolate. Vanilla wafers dipped in applesauce or peanut butter worked for me. Black pepper naturally had its own mold, cheese had enzymes, orange juice was acidic and coffee and chocolate had caffeine. Oh, well!!!
On March 12, I was so tired that even my feet slept. The chemotherapy and the low blood counts caused the fatigue. I had blood transfusions in the evening as my red blood counts were down to 8.1. MCV provided excellent care. An exercise bike was delivered to my room (Hint! Hint!) I had visitors, and Ross spent part of each day with me.
I received my last round of chemotherapy. Fatigue was the only problem. I was not happy when I heard that I would not develop hair loss. I wanted heavy, curly hair. I growled at the doctor.
I had two units of blood on March 13. My ferritin (iron level) was 1085, down about 500 from the last test. That was great news.
On March 14, I had a very busy day. I received a Pentamidine breathing treatment to protect my lungs. The treatment was followed by 20 minutes of full body radiation. In a pre-admission visit, a radiology resident told me that I could not wear my pajamas during radiation. I was relieved as he was just teasing. When I returned to my room, I received the first stem cell transfusion. The stem cell transfusion was not pleasant. I managed the weakness and light-headedness by focusing on sending Charlotte’s stem cells to my bone marrow. I hoped I would eventually receive her artistic talent…must get that sketchpad!!! On the 15th, I received my second transfusion of stem cells. My re-birthday was completed. The physicians’ assistant, Rick, transfused me with 24+ little bags of stem cells. Stem cell transfusions smell bad. Everyone knows when stem cells are being infused as the whole hospital wing smells medicinal. I took about 40 pills a day and remained connected to two IV bags. I am sure this is all going to work.
Love,
Shirley
April 9, 2003
Dear Friend
Well, my re-birthday was completed on March 15, 2003. I was transfused with 5 million peripheral stem cells. They should travel to my bone marrow, live with my cells and take over.
Ross had his work cut out for him. The house had to be sterile for my arrival home. This past fall, we had the duct work professionally cleaned. We bought new carpeting for most of the house in preparation for my return home
I would not change any of my decisions about my treatment. I learned that I was the first at MCV to undergo this type of treatment for my condition and the first in the nation. At some point, I will be the topic of a medical journal case study. I hope that what I have been through will help others. The experience has changed my outlook on life and helped me set my future priorities.
On March 17, I had an episode of gagging and coughing caused by the medications. Ross and I watched “Sweet Home, Alabama” and then I rode the exercise bike for about a mile.
The doctor voiced concern about my low heart rate, and I told him it was normal. A heart doctor checked me and I had an EKG. I have had a slow heart rate since diagnosis in 2000. The heart rate ranged between 40 and 48 bpm. Actually, I felt good, just tired. The waiting began for my counts to drop and Charlotte to take over. I could not wait to become an artist.
The food continues to be bad: breakfast was the best meal. Oh for baked salmon, butter beans, dinner rolls, and key lime pie!!! Maybe in 6 months!!! I had a piece of pound cake for a snack. It was missing ice cream and chocolate syrup. I have kept a positive attitude. The notebook computer from Scott has made communication easy. Mary came to visit. She brought me a stuffed, dancing, singing chicken and a card. She stayed for about 45 minutes.
As of March 19, there would be no more sugar coating….welcome to the real world of the bone marrow transplant unit! The previous morning I was sick and ill most of the day. I had two more units of blood. Thank goodness for low dosage chemotherapy. I also got the big "D". They gave me morphine at night for leg aches. The doctors remained pleased with my progress. The weakness required me to wait until Nurse Ross arrived to take my shower. Strength must return, so I can continue my independence.
March 20th, wow…still sick! The doctor’s diagnosis was that I was normal. The 12-a-day Cyclosporine caused the stomachache. The medication for the stomach made me very tired. I finally figured out what to order from "the menu." The entrees were not for me. I ate soup and sandwiches. I tried to add fruit and vegetables. Canned food does not taste like my cooking. I have lost about a pound a day. Weight loss should stop as my body adjusts to the "drugs."
On March 21, we discovered the stomach problems were definitely from the Cyclosporine (anti-rejection). Phenergan taken before taking the pills solved the problem. All my blood counts were down and I was again neutropenic. I did not have enough white cells to fight off infections. I could not leave the room for the hall walking routine. I rode the bike for a little bit while Ross visited me. The doctors said I was progressing as expected with no unusual problems. I had leg aches at night. I took Ambien to sleep and morphine for the legs. I actually slept for 7 hours. I have not regretted going through the transplant. I had to look at the big picture.
March 23rd marked two weeks in the hospital. My stay would be another two weeks, but if I progressed as I had, I heard that I might go home in a week. Of course, we would not know the engraftment status (my sister's stem cells taking over) for about two months. The first 100 days at home are critical and I must be in a sterile environment, as I will still have a compromised immune system.
I even curled my hair and put on eyebrow pencil and lipstick. I tried to put on make-up and curl the hair daily…could not let anyone see me without the frills! The curl did not last, as I had to use baby shampoo, no setting lotion and no hair spray. I did not think that I had lost even one hair. It would not be thick and curly. The doctor said that I was right where I should be. I was weak, but that was expected.
On March 24th. I had two units of blood. The units were B negative blood. That meant that the majority of my blood cells were B (Charlotte's type) instead of my type AB positive. I was making very few of the old cells. I was a week or so ahead of schedule. The doctors were very pleased. I also received a platelet transfusion. My blood counts should start going up. The platelets are the last to change and go up.
By March 25, Charlotte’s stem cells were working at top speed. My own red cells were breaking down in the blood stream, and I turned very yellow. This happened 25 to 30 days sooner than expected. Dr. McCarty would have something amazing to write about in the medical journals. I told the nurse that it was because I was determined and stubborn. She told me that I was stubborn from the inside out.
The headaches and back pain were my only discomfort. They were the result of the chemotherapy. I also had a little nausea after swallowing 15 pills twice daily.
I said a special “thank you” every day for my sister. She gave me a second chance at life. This whole experience has made me a better person ready to enjoy each day that I have been given.
I thought I would be going home on Monday. I was progressing 25 to 30 days ahead of schedule. One e-mail question was about the fact that I would be famous,. If I were, nobody will know it, as the medical journal article will probably say a 60-some year old woman.
I was not yellow, just bright orange. The color was caused by the bilirubin. My red cells broke apart in the blood stream, but Charlotte's were fine. When her cells started working harder, I would no longer need transfusions.
On March 28, I knew engraftment was occurring as I had leg cramps and little aches here and there. Knowing what the results would be, I said a thank you for every big and little ache. The plan was to go home on Monday. Beginning on Tuesday, I knew that I would be visiting the bone marrow clinic daily for seven days. I would have blood tests daily. After the first seven days at home, a schedule of visits would be set up. I thought it would be two to three times a week.
I would be glad to have my own bed back. I imagined the pleasure of nestling into my pillows and covers and enjoying my space. The hospital beds gave me a major backache. All the IV changes, blood pressure checks and lights being turned on and off interrupted my “beauty” sleep.
I gave Ross a grocery list. My diet would be limited, but we planned to be creative with the food preparation. Black pepper use at the table is prohibited. Pepper is full of mold. I cannot remember what kind of mold. The only thing that Ross could not find in Ukrop’s or Kroger’s was apricot nectar. I will drink apple juice, no orange juice allowed for a while. I can add a restricted food item every several days. The first addition will be salmon and then butter beans. I guess you can tell that my taste buds are beginning to work again.
Oh, BTW, I have lost some of my hair. I thought it looked a little thin on top. I could feel new hair growth all over my head. I had hoped for thick and curly.
It was finally March 29, and I would be going home on the following Monday. I walked the halls twice. I slept for two hours afterwards. I used the exercise bike. I know it does not sound like much, but I did ride for 1.5 miles. Considering all, that was good. The bike has a chair seat with the pedals out in front. It also gives heart rate. Mine usually stays between 46 and 56, but I got it up to 102. Then I had to take another nap. I needed to get my strength back so I could walk into the bone marrow clinic on Tuesday. I needed to be as entertaining as before the transplant.
I asked about the little aches and pains, the doctor said it was normal. He also said being tired was fine. He said, "You had a transplant."
On March 30, I waited for my discharge instructions and the visits from the doctor and nurses. My platelets dropped to 31 thousand. If it fell below 30, 1 would receive a platelet transfusion. Most transplant patients have their platelets drop to 10 thousand. I had been told that the discharge date would be March 31. Well, going home did not happen. I stayed in the hospital because my white counts dropped from 1.0 to .7.
By April 2, I was still in the hospital. My blood pressure went up, and I was given a blood pressure pill. A blood pressure drop followed that to 82/36. After several hours and a blood transfusion to increase the fluids in my body, my blood pressure returned to normal. This was all followed by a fever of 101 degrees. Why? No answers. Blood cultures were taken and I was given antibiotics as a precaution. I guess these things are not unusual for transplant patients. I just chalked it up to another learning experience.
On April 5, I received the news that I would remain in the hospital for about another week. I had a fever ever day. It spiked at about 102 and then returned to normal. It might spike during the day or at night or both. I was given enough antibiotics that anything lurking in my system should have been attacked. I had a CT Scan of the lungs. They wanted to make sure that nothing “funky” was growing there. The report was good.
I told the doctor that I could not hear out of my left ear. I had sinus congestion, so back to radiology and a CT Scan of my sinuses. No report yet. I tried to bribe the aide to take the gurney outside and run me up and down Marshall Street, but he refused.
I was taking about 35 pills a day and antibiotics through IV. I had to receive potassium and magnesium by IV, because my electrolytes were low. I received a growth factor to increase the output of white cells. The medication caused bone pain. Fortunately, IV medications were given at night, and I usually slept through the process.
All of this shall pass. Engraftment of Charlotte's stem cells would be complete within 2 months. Oh, the other day when I showered and washed my hair, I had more hair on my hand. So maybe my hair would be thick and curly.
I continued to hang in there. It was one step at a time, but I knew that I would make it. When I went to radiology, they called me a model patient. I was also one in the transplant wing. All of the nurses were wonderful. My favorite was the one from the first day that had problem drawing my blood.
On April 6, the doctor was pleased when he came in after seeing my blood counts. My hemoglobin went from 9.1 to 9.7 and the hematocrit from 26 to 28.1. Those numbers usually drop and that was why I needed frequent transfusions. Therefore, you see Charlotte's cells were producing healthy red blood cells. My platelets went from 62 to 95. A few more points and I could use a real toothbrush instead of a sponge brush. The most amazing was the white cell count. I received a growth factor to force the white cells out of my bone marrow into the blood stream. My counts rose from .7 to 3.4, which was within the normal range. This all happened in a 24 hour period. Again, I was ahead of schedule.
Now the not so good, but good in the end. I continued to run a fever with it spiking once or twice a day up to 101 or 102. They could not pinpoint the cause, so I was on many different antibiotics daily. Radiology did chest x-rays every Thursday. A pulmonary doctor reviewed the results. Dr. McCarty told me that I might have to have a tube put down my throat, so they could look around in my lungs. Dr. McCarty said I would not feel it or remember it as they would put me in la la land (I spend a lot of time there anyway). I had a sinus CT scan, and it showed a thickening on the left side. An ENT would look around. If they had to scrape, I would be in big time la la land. The good part was that I would go home with only the needed antibiotics.
Now the funny, I had a two-minute pity party. I looked at Ross and said, "Now, Charlotte, no time for a pity party!" I called myself by my sister's name. The other funny, you know how sometime you get tongue-tied. Well, the IV pump started beeping, and I pushed the nurse's call button and said, 'The peeping is bumping." I had wanted to call it a bleeping pump in the middle of the night.
Even with the little roadblocks, I thought things were going well. My sister's stem cells were taking over, the result being no more transfusions and more energy. I needed to make up for three years of mall shopping. I would set up an exercise routine. I had a different outlook on life.
On April 7, I met with the ENT and Pulmonary Specialists, and the CT scans did NOT indicate the need for any further procedures. Wow! No tube down the throat!!! I celebrated with a great vanilla milkshake instead of a “cardboard” meal.
On April 8, I found out that I might go home the next day. My blood counts improved with the white counts finally in the normal range. I walked 12 rounds of the hall. Ross grocery shopped again and cleaned the house again, even the doorknobs and light switches.
Oh, this is April 9, 2003, and I am about to finish this letter. Yes, yes, I am finally home. I cannot do much as I am very, very weak. Once I get my strength back, I will feel fine. So far, every body part is responding to the wonderful transplant. I do not show any signs of graft vs. host disease. I do not plan to get it.
Ross picked up all my “drugs” this afternoon after we got home. I followed instructions and stayed in my chair while he was gone. We are so fortunate to have insurance as the “drug” bill was $4100.08 and our out-of-pocket expense was $56.00. That was a blessing. I think about the people that are struggling through the transplant process without the benefit of insurance.
I am on a limited diet and cannot handle raw or uncooked food. My meals are much better here. I had pineapple, cottage cheese and saltine crackers for lunch. Ross fixed my scrambled eggs, ham, cheese and toast for dinner. I cannot even crack an egg. I had a small vanilla milkshake for my evening snack.
It is good to be home. It is a little more work for Ross. He has all the cleaning and cooking (under my supervision) to do. I help when I can. I will follow all the rules and plan to keep progressing so I can eventually take the survivor’s lap in the Relay for Life with my grandson, Matthew.
I start back to the bone marrow clinic tomorrow morning. The time there will vary from a few hours to all day depending on the IV’s needed, especially for potassium and magnesium. I will send another letter after I have been back to the clinic and am on a regular visitation schedule.
Love,
Shirley
April 30, 2003
Dear Friend,
April 10, 2003, was an amazing day. Thirty days had passed since my admission to the hospital. I had my first return visit to the clinic and found out that I had daily schedules. I received potassium and magnesium, had blood tests and medication evaluation. We had been told to plan on staying the day. We arrived at 10:00 and were home before 2:00.
Amazing!!! Tuesday evening blood was drawn before going home, and my hemoglobin was 9.1. On April 10, my blood was drawn and it was 10.1. Usually, my counts went downhill leading to another transfusion. I was finally producing healthy red blood cells that could exit the bone marrow into the blood stream. When I saw the results, I sat and cried - happy tears.
My taste buds returned. I still had hair along with a little new straight fuzz. I started afternoon naps – a trait from Charlotte (my donor). I do not think that I gained her artistic talent, as I have not started drawing and painting beautiful pictures. Oh well, all I really wanted were her stem cells, and they were of the highest quality.
On April 11 at 8:28 AM, I became a new grandmother. Kelli made me the proud grandmother of Cameron (9 pounds 2 ounces and 18 ½ inches long). My sister made it possible for me to be here for the new arrival.
Saturday, April 12th, was not a day of rest. I had to go the clinic. My blood counts continued to rise. After three years on transfusions, I was finally producing healthy red blood cells. My hemoglobin was up to 10.7. That is higher than my counts were when I used to receive two units of blood. There were no signs of graft vs. host disease. My problems were minor with burning eyes and knees that hurt. I was told that I could eat Baked Lays potato chips. I would have some crunch with my lunch. My body needed to learn digestion all over again, so I added one food at a time. Now for the butter beans!
On April 15, 2003, I celebrated the one-month anniversary of my re-birthday. My only complaint was being so very tired. For the first time in three years, I walked out the door, down the driveway, across the street, visited with neighbors, walked back up the driveway and into the house. That was quite an event. When I lived through blood transfusions, I could not do the driveway without difficulty breathing.
I had my clinic visit and received more magnesium by IV. The honeymoon continued with no GVH.
I made a plan to buy new shoes….shopping, shopping, shopping…return to the real world.
On the 14th, I ate rainbow trout, butter beans, and a scoop of ice cream with half of a sliced banana. The only thing missing was the special dark fudge sauce. So far, I have lost 5 pounds.
Kelli and Cameron came home from the hospital on Sunday. Matthew loves being the big brother and has the T-shirt to prove it.
Thursday, April 17th was a long, long day. I had another bone marrow biopsy. La La Land did not arrive until near the end of the procedure. Needless to say, it hurt when the long needle went through the back part of the hip to the center of the bone to draw out the fluid and a piece of the marrow. They usually send me to la la land, but the drugs did not take me there until the procedure was finished. I went to sleep as the doctor was placing the bandage on my hip. I woke up an hour later and was connected to a five hour IV of immunoglobulin to boost the immune part of my blood.
I did have to go to the clinic on Friday for blood tests. We left home at 9:20 and were home by 11:30. Tomorrow I go in again for blood tests and will probably be there a little longer as I will wait for the results in the event that I need magnesium IV.
Unfortunately, I did not have many visitors, as everyone fears bringing in germs. I ordered a few lightweight long sleeved shirts; when outside, my skin must be covered to prevent sunburn. I still needed to get a big hat. Ross put a "baby shade" on the passenger window, so my face would not burn.
I just finished meal number five, ice cream with banana and peanut butter. Good! I followed my usual schedule of starting my pill schedule at 8:00 AM and finishing the daily schedule at 10:14 PM.
The lady will not be famous until about 6 months have passed. Then the case study will be submitted to a medical journal…..a 62+ lady….
I also had to go to the clinic on Saturday, April 19, I did cry in the clinic because my hemoglobin was up to 11.1. That was only .3 below the lower end of the normal range. I had not seen a reading like that in at least three years. Charlotte really gave me quality cells. At pre-transplant, my counts would have been around 7.5, and I would have been ready for two units of blood.
My ferritin level went from 1050 to 6000 as my body shed my own red blood cells. The process throws more iron into the system. Another test was performed Wednesday, and the levels had dropped back to 4781. The Desferal pump has continued to be connected to my stomach via a needle every night for 8 hours to inject the drug to lower the iron levels in my system.
I seem to be a little stronger each day with no signs of rejection. How could my body reject the wonderful gift from my older sister! I must never forget the support of my younger sister; she was here both times Charlotte came to donate stem cells. Family is wonderful.
Sunday morning started with the usual pills. I got up at seven and took some pills, then at eight took a few more pills. I finally got up at nine, had breakfast, read the paper, and took two more pills. At 10:00, I went back to bed and slept until 2:15 in the afternoon.
I ate the little chocolate chip cookie. Each nibble was a special treat. Each cookie was about the size of a half-dollar. I made it last for at least 12 bites. I had no digestive problems, so I had another on Monday. Ah, the simple pleasures. The cookies were part of a gift basket from Coram Healthcare the supplier of my Desferal and pump.
I went back to the clinic on April 21. My blood counts were still good. I had an IV of saline because my creatinine levels showed a little toxicity due to some of the drugs. The words were drink water, drink more water.
On April 22, Ross and I made three big pans of lasagna. Along with the lasagna, we took salad, bread, and cookies for the staff in the bone marrow clinic and the bone marrow transplant in-patient nurses both day and night shifts. We made Ross a very small pan of lasagna. It smelled so good. I could not even have a taste.
On April 23, we took the meals to the clinic and nurses. On the way, we stopped to get salad dressing. Ross left the air conditioner on for me. A woman got in her van, got out of her van, peeked around the baby shade, saw a little old “baby”, and got back in her van. She probably planned to rescue a baby left alone in a car! I have had a wonderful week. My creatinine levels were still a little high, so I had another bag of saline laced with magnesium. The chocolate chip cookie did not cure all.
The funniest part of my clinic visit was the drawing of blood samples from the double Hickman catheter in my chest. Usually, the nurse just accessed the catheter and drew the blood, but not for me, I did not cooperate. I got into the reclining infusion chair, the chair was tilted back, and it looked like I was going to slide off the chair. Next, I turned on my right side, turned my head to the right as far as possible and threw my left arm over my head. Finally, I did deep breathing. They were lucky and got the blood samples. It was all worth it. For two consecutive days, my hemoglobin was 11.2, that is only .2 from the bottom end of the normal range. My white counts were back to normal.
I have a little GVHD (graft Vs host disease). They say a little is a good thing as my sister's cells battle my remaining cells. Of course, she is stronger and will win!!! This was the only game where I was happy that she was winning. Now, Scrabble was a different story. The GVHD in my system was a little rash and itch on my upper arms. I was prescribed a cream to use to control the itch. It sure helped with sleeping. GVH only affects patients receiving stem cells from a donor.
We got home around 12:30, and after lunch of cottage cheese and pineapple, we went to Peeble's Department Store. I was finally ready for spring and summer, except for shoes. I bought pants, tank tops to wear under lightweight long-sleeved shirts, another long sleeved shirt, and two floppy straw hats. The skin must be covered and protected from the sun because of the chemotherapy and drugs.
I felt so good in the morning. I said a cheerful good morning to Ross and said it was beautiful day and great to be alive.
On April 24, I went to Shoe Forum and bought three pairs of shoes. I had to wear my mask the whole time and I am not even the Lone Ranger….no silver bullets.
On April 25, I went to the clinic, and my blood counts were up again. Charlotte’s hard working cells were doing their job. My creatinine levels were high, and I needed more fluids. The Cyclosporine levels must be adjusted to correct the creatinine problem.
On Sunday, we went to Lowe’s and bought some bedding plants. I wore my jeans, long-sleeved denim shirt, denim floppy hat and a mask. I do not think I saw anyone that I knew, if so, they would not have known me. I played the pointing game. I pointed at a plant, and Ross picked it up….I could not touch dirt. When we got home, I sat in the sunroom while Ross sat outside potting the plants. I did more; I gave directions!
On Monday, I went to the clinic. I pulled the typical; my body refused to give the nurse any blood. It took two hours to get a sample and then another two hours to get the results. I would be back in the clinic the next day. No treatment was needed, and they sent me home.
April 30th, I went to the hospital and the nurse accessed my portacath to get the blood sample. I had an IV of fluid laced with magnesium. My blood counts were still good. It had been five weeks since the last transfusion. I could not be happier.
They are now lowering the dosage of Cyclosporine (anti-rejection). I have gone from 325mg twice a day to 75mg twice a day. Once I am off the drug, we will know what else might need to be done. Oh, if you have never experiences the smell of Cyclosporine, you are really missing out. It has a very strong smell of castor oil………ugh….
Since blood could not be drawn from the Hickman Catheter (the one hanging out of the left side of my chest), the doctor said it made blood cultures impossible, and he wanted it removed. It made sense because if cultures could not be done, we would not know if there were any infections. I went to Interventional Radiology at 2:00. They did not provide la la land for this. During the process, they gave me between 8 and 10 injections of lidocaine in my chest. It took quite a while to remove it because my body had accepted it as part of me, and there was a lot of scar tissue. It did hurt. I had just one tear in each eye. I am ready to conquer anything.
I will write again later. Take care of yourself. Life is wonderful.
Love,
Shirley
May 23, 2003
Dear Friend
On May 1, I got up at 7:00 and took some pills. I got back up at 8:00 and took some more pills and then rode the bike for 1.8 miles, took a shower, had breakfast and took some more pills. Then we went to Hopewell and I visited with Dr. Gandhi and my favorite chemotherapy nurse, Janett. Dr. Gandhi took care of me until I checked into MCV hospitals. If you know me well, you know that I have never been a hugger. I do not know whether it has to do with Charlotte's cells or not, but I hugged the doctor. I thanked him for keeping me around until a treatment for my condition became available.
After that, we stopped at Peeble's Department Store again. I really needed another tank top and long-sleeved shirt to go with my khaki pants. I have the hat and shoes to match the pants. Actually, when I get ready to go out and put on the mask, I will not be recognized.
On May 2, I received the bone marrow biopsy results from April 16. As of April 16, 2003, my blood cells were 91% my sister's, Charlotte, cells. The biopsy showed all normal blood cells and no signs of Myelodysplastic Syndrome.
On Tuesday, May 6, 2003, I went back to the clinic for my weekly chest x-ray, a physical, and a bag of fluids laced with magnesium. Everything was fine. On Wednesday, May 7, I went back to the clinic for more IV fluids because of the creatinine levels. The amount of Cyclosporine was reduced. The doctors and nurses consider my condition amazing.
Today I increased the distance on the exercise bike to 3.5 miles. I only ride every other day. I told Ross that I wanted small hand weights for Mother's Day. I am actually in better physical condition than I was three years ago. I seem to get better every day. Sunday afternoon, we walked up and down every aisle in Kroger's Grocery Store. I had not been to the grocery store in two years. I wanted to see if I could find anything additional for meals. All I found was a low sodium, low fat buffet ham.
I made pizza for dinner tonight. Of course, I steamed all the vegetables before putting the pizza together. I put chopped ham on top and then the low-fat mozzarella cheese. It was quite good. Ross had to chop the vegetables, as I cannot touch them. I could not eat much, so there were leftovers.
I feel good and some days, I just put on my hat and mask and we go shopping. I do not touch anything and keep my hands in my pockets. I sometimes wonder if people think I have SARS! One person asked if the pollen was bothering me. I said no. Just let them wonder!!!
May 9th was another trip to the clinic. The blood counts were fine, and I did not need any fluids. The bone marrow biopsies continue, and I have another one on Monday. Around 2:30, I put on my hat and mask and had Ross take me to Ukrop's Grocery. I had not been there in two years. I walked every aisle and tried to find something I could eat to give a little variety in our meals. Not much luck. While he was in the checkout lane, I went out to the car. I got there before the big rain hit. Naturally, Ross got wet.
I guess all the walking today made my legs a little tired. I have more energy. We actually cleaned out my closet. I had five bags of big clothes for the Salvation Army. Time to shop again….
On May 12, my hemoglobin was 11.7. This was the first time it had been in the normal (lower end) range in three years. My white count and platelets were also normal. I was so happy that I had tears in my eyes, and I hugged the nurse. I never used to be a hugger. I also had another bone marrow biopsy. I do not remember much, so I think I made it to la la land.
I hope that after Thursday, I will only have clinic visits once a week. I told them I might have withdrawal as they have become like family during the past 9 months. It sure was worth all the procedures to be where I am today. Not only am I riding 3.5 miles on the bike every other day; I am now using two-pound weights. I may be in better health than I was three years ago. Now if only I could get more sleep.
May 14th, We had a wonderful day; the temperature was about 75 with sunshine and a nice breeze. We went to Williamsburg at 10:00 in the morning and got home around 3:30 in the afternoon. We went into most of the stores at the Prime Outlets. It was a lot of walking, but I did not get tired. We went to the car at 12:30 and I had a peanut butter and jelly sandwich and cold water. We continued shopping. I bought a new outfit at the Koret Outlet, and Ross bought two shirts at the Big Dog Outlet. Naturally, I wore a long-sleeved shirt, mask and hat (Oh, I was fully dressed). We also went to the Westpoint Stevens and bought two sets of sheets.
I did call the doctor's office in the morning to have the trip approved. Then they called me back around 4:30 to let me know that I had to have another IVIG (IV of immunoglobulin). That is the IV to boost the blood immune system. It takes around 5 hours and sometimes has flu like symptoms (fever). I had one a month ago and did not know it was a monthly thing.
May 19th, I had a perfect treat today. I had to be at the clinic at 10:30 and as usual, my creatinine level was high. I had to have another IV of fluids. I was checked by the PA (physician's assistant) and everything else was fine. The treat was——a freshly grilled Chick-Fil-A sandwich. That was my first food prepared outside of our kitchen. It was delicious. The Chick-Fil-A at the hospital has a perfect rating from the state health department and of course, I shared that with Rick, and he said I could have one. I immediately sent Ross down for one, carted my IV stand down the hall to the patient kitchen and enjoyed every bite. Just as important, but not as much fun, my blood counts were all in the normal range today. My Cyclosporine dosage was reduced again. I should be finished with them in about 10 days.
We got the results of my latest ferritin level (iron overload from all the transfusions). In the last four weeks, the level dropped from 4781 to 3500. At this rate, I should be off the nightly Desferral pump in about 2 months.
Next week I should have the results of the bone marrow biopsy. I should be 100% Charlotte. I may have more energy than she does!!! I may have to expend some of the energy and go and buy a few more hats. I really do enjoy dressing sporty for my clinic appointments.
May 23rd, I must tell you about that wonderful grilled Chick-Fil-A sandwich that I ate on Monday. On Tuesday around 5:30 PM, I did not feel great, so I took my blood pressure. Now, I have never had a blood pressure problem. Since the transplant, the medications have slightly elevated the pressure. My blood pressure was 194/106. I immediately called the clinic. They put me on a low dosage blood pressure medication, one per hour until it dropped below 180/100. Within an hour it had dropped. I went to the clinic on Wednesday and my pressure and blood tests were fine. When I got home, I went on the Internet and found that a grilled Chick-Fil-A sandwich has 1000 mg of sodium. Add to that the ham sandwich and dill pickles that I ate for dinner. I was well above the 2500-mg daily allowance of sodium. I have always watched my salt intake due to a long bout with vertigo five or six years ago. I guess I blew it. Monday's pleasure! Tuesday's problem!!
I had my blood pressure cuff checked at the clinic on Thursday. Everything was fine. I just cannot have any more Chick-Fil-A sandwiches. I will have to make my own at home. Now I must check nutrition values on the Internet when I am allowed to eat out (in several months).
My biopsy results showed that I was 92% Charlotte. The blood counts were still good. In fact, my hemoglobin was in the normal range. I have not had a transfusion since April 8, 2003. I was getting them every three weeks. I have to learn to channel my new energy and still follow the rules - no housework (no problem), no lifting over 5 pounds (I use 2 pound weights), no going out of the house without a mask (hot inside, but no need for lipstick), no eating out (Ross and I prepare meals together, I direct). I cannot shop during peak shopping hours. I have been to the grocery store, but the mall is better. The other day we walked the mall, but I did not buy anything. I either walk or ride my bike every day. Ross does the housework; I think I will keep it that way.
I will write again soon.
Love,
Shirley
June 30, 2003
Dear Friend
May 28, 2003…After another clinic visit, I learned that all my blood results were good. Another five days and the Cyclosporine would be finished. My only complaint was fatigue.
June 02, 2003…Another clinic visit and more good news. Blood tests were good, and the Cyclosporine was finished. Clinic visits will only be weekly, and shopping with the masked woman will be daily!
June 10, 2003…I developed a rash from neck to toes and thought, "Here comes the GVH" (graft vs. host disease). The clinic sent me to the dermatology department Monday afternoon. The doctor said it did not look like the classic case of GVH. It was probably an allergic reaction to something. They did a skin biopsy on my back. I was told it would be painful after the lidocaine wore off. No pain, no discomfort. It was the size of a pencil eraser and had two stitches. The doctor in the bone marrow clinic put me on the six-day supply of Prednisone as a proactive measure until the biopsy results were received.
I am still riding my exercise bike, four miles every other day. I have been shopping on the sunny days and just enjoying myself. I have added a few things to my diet. I can now legally eat a square of special dark chocolate as an evening snack. I tried my favorite orange juice with calcium. I did not like it. Ross had to finish it. I lost more weight and returned to a size 12.
June 16, 2003…. Saturday evening, I called the clinic as the palms of my hands were quite red and the skin felt burned. The nurse contacted the doctor and he wanted me in the clinic on Sunday morning. Dr. McCarty said I had stage one (mildest form) skin GVH (graft vs. host disease). A little GVH is a good thing. It again proved that I had a new blood system. I was told that if it got worse, I would have to be on steroids for a while. It looked much better the following morning. I used a steroid cream on my hands. I told a friend that my only problem was that I could not work on my polymer clay jewelry for a while.
I went to the clinic for my monthly immunoglobulin IV, a three-hour process. I also had blood work done. I was quite pleased with the results. My hemoglobin was 13.5. I had lost 3 1/2 more pounds since last Thursday. I found out that I not only had my sister's blood cells and DNA, but my whole metabolism had changed. It was also possible that I had some of her allergies. All this was good news. Her blood cells were working hard…no blood transfusions since April 7, 2003. Before the transplant, I received two units of blood every three weeks. That was all behind me.
I went back to the clinic on Thursday so the doctor could check my hands. I was scheduled for another biopsy on June 30.
June 24, 2003….Last Tuesday, Kelli, Mike and the boys arrived for the long awaited visit. They stayed until Friday morning. Originally, they had planned to leave on Thursday, but the car air conditioner problems delayed their departure for 24 hours. Of course, I did not mind at all. I enjoyed the grandsons. Matthew still had hugs for grandma, but not as many as usual. Cameron, age 10 weeks, was pure pleasure. It was my first visit with the new baby. I felt a little let down when they left for DC, but they stopped back for about an hour on Sunday on their way back to Georgia.
Well, I was still doing fine with only a few bumps in the road. My blood counts were high and all my blood chemistry was great. A little GVH started in my mouth with no visible signs; just a burning. I am now using a special swish, swirl and swallow mouthwash. It was supposed to be very bitter, but with impaired taste buds, it tasted fine to me. My taste buds left a week ago. Only special dark chocolate had any taste. The skin rash was better, so I did not need to go on Prednisone. That was good; I did not want the weight gain or the "fat" face.!!!
My platelets started to drop below normal, so the doctor stopped the Bactrim. As of Monday, the platelets started back up. I would not go back on Bactrim (for the lungs). I asked if the new drug would cause side effects and the answer was possible liver problems. Since the breathing medication once a month does not have harmful side effects, I asked to be put back on it. It takes about 20 minutes once a month. The doctor said that it might cause an upset stomach. I told him I could deal with that.
I continued to read about everything (drugs, etc.) on the Internet. The doctors gave me information and then I gave them my "medical" opinion!!!
I asked if I could have a hotdog. The answer was a definite no as was the addition of Cheddar cheese and salad. They would not let me add anything new to my diet. It was possible that I would eventually be able to go out for a meal. Good luck....no seafood, no fried foods, etc. I am happy with my Morning Star Prime Griller with three pickle slices, mayo, and whole wheat bread (when I can taste). Hmmmm, one friend wanted to take me to lunch. I decided to invite her to our home. I wondered if she would like a Morning Star Griller!!!! (a glorified soy burger) For dessert we could have my favorite....banana, low fat vanilla ice cream with a glob of peanut butter on top. I could bake her some chocolate chip cookies!!!
June 30, 2003…. I had my bone marrow biopsy in the morning. I was fine, but tired from the drugs. I did talk while in la la land. I told the nurse about the people on the elevator with fat stomachs and fat necks and that they needed to do something about it.
I got a call from my nurse, Judy, with my blood results. I was very pleased except for the platelets that dropped from 112 to 85. I was told not to worry as Dr. McCarty thought that it was caused by the GVH. Platelet transfusions would only be needed with a drop below 20. We did not think that would happen.
I started taking 60 mg of Prednisone a day, and experienced relief from the burning hands. I hope that by Thursday we would be able to cut the dosage. With the GVH getting better, my platelets should be going up. I was very pleased with my progress, as were my nurse and the doctor. The nurse told me that I looked great. I actually slept for six hours the night before and would have slept longer except I had to be at the clinic early.
Must close for now. Thank you for being such a good friend.
Love,
Shirley
September 1, 2003
Dear Friend
July 3, 2003…The GVH on my hands continued to improve. My blood counts were great, my platelets rose from 85 to 115 in four days. Everything looked good. Now I had to get rid of the GVH. I cried when I got the results because my hemoglobin was up to 13.3 from 12.9 and my hematocrit was up to 37.2 from 36.3. I am well into the normal ranges.
Remember the friend that I offered lunch of a Morning Star Griller (soy burger)? She said she would settle for a peanut butter and jelly sandwich. I guess I will wait until I have my taste buds back and then fix a real brunch. I do enjoy cooking. I can make some good breads, etc. With my problem hands, I have not been able to make any jewelry lately, but I can cook.
July 15, 2003…On July 14, we spent our 41st anniversary at the clinic. I had blood tests, a 4-hour immunoglobulin IV and a physical. My blood counts were great and my liver enzyme levels were headed back to normal. The Prednisone continued for the skin GVH. My legs were all clear, but I had the rash on my upper body. I love Prednisone!!!!!! I was beginning to look a little like a chipmunk. It would go away once I stopped the Prednisone. Thank goodness. I must wear a mask when I go out. That way, my chipmunk cheeks stayed hidden. The doctors said I was extremely healthy and little GVH was good. It showed that my blood was strong and my Myelodysplasia was completely gone.
We went shopping, and I took advantage of some big sales. I bought four more long-sleeved shirts and a pair of slacks. We went to Pier 1 Imports and I bought two covered baskets for storing my pill bottles. Kelli suggested it since I had to have the stuff sitting out; baskets would be better than cardboard boxes. I agreed; it did look better. She also suggested that we rearrange the contents of the shelves in the living room. Originally, I had books on one shelf, pictures on another, etc. We arranged them in an HGTV show type arrangement. Since I had to wait for my hands to heal, I could not work with the clay jewelry for a little while longer. These little projects kept us busy. I kept Ross busy with grocery shopping and his “honey do” list. I did most of the cooking, my laundry and the little stuff. I rode my “going nowhere” bike at least two miles a day five days a week.
July 27, 2003…Another bone marrow biopsy is scheduled for July 28. I have them put me totally into la la land. The last time I talked about people on the elevator. I said that they had thick stomachs and necks, I was worried about them, and they should do something about it. I hope I keep my mouth shut this time.
My Prednisone dosage dropped to 20mg per day. I still looked like a little chipmunk, but had not gained any weight. I lost more. The Prednisone not only caused large muscle weakness, but bone pain in the hips and knees. By afternoon each day, I had the pain under control. At least my GVH (skin rash) seemed to be improving, but my taste buds were still gone. I tolerated it considering the health of my blood. The Myelodysplasia was gone, not in remission, but gone.
One friend said she told someone that I had good days and bad days. In truth, I have had good days and a bad few hours here and there. One of my other friends dropped in for 2 minutes to bring fresh sweet corn and butterbeans. Oh, she gave Ross two tomatoes.
We have been busy. I mean Ross has been busy. I just supervise. We plan little projects. We have a small bedroom upstairs that Ross has been using for his computer room. I decided it needed some changes. He built book shelves above the computer table, and we went to Pier I Imports and bought a loveseat sleeper, pillows and new curtains. Now when the kids visit the grandsons can have their own room.
I have also been doing some recipe research on the Internet for foods that I can eat. I am going to put them on 4 x 6 cards. I was told that I could not have Alfredo sauce because of the high fat content, so I found a fat-free recipe. I have quite a collection of fat-free or low fat recipes to enter into the computer. I am going to call it, 'When Taste Buds Return!"
I started making clay jewelry again. I made some neat face pins and pendants.
September 6, 2003…My blood counts were still great, and the Prednisone ended. Because of the Prednisone, I was still having problems with bone and muscle pain in my legs. The cane came in handy until I got moving.
The next step was to do a different procedure than medications to get rid of the GVH (graft vs. host disease). I had a liver biopsy at the beginning of August and had a double catheter placed in my chest below the collarbone. The liver biopsy was transjugular. Nasty details, but fortunately, I did not have GVH of the liver. The catheter was placed in the right side of my chest because I am now receiving Photopheresis twice a week for two days each week for the next 8 weeks, then once monthly. It does not hurt, just sitting for about 21/2 hours. The blood is removed in six cycles, the white cells are separated from the rest, and the remaining blood is returned at the end of each cycle. The white cells are treated with a drug and photosensitive light to alter the DNA of the white cells. After treatment, the cells are returned to my bloodstream. My sister's white cells are fighting with my remaining few and this causes GVH. I should see the results in several months and may be on this procedure for a year or two.
I will write again soon. Take care!
Love,
Shirley
November 1, 2003
Dear Friend,
Since my last letter, Kim and Tyler have been to visit. When Kim was here, we took Tyler (age 5) to the Farmers' Market and he selected his own fruits and vegetables. He loves all vegetables, but we talked him out of okra, as Kim has never prepared them. We took a picture of him sitting in the back of a truck holding the watermelon he had selected. He took two coolers of fresh produce home with him. He also took some of the other vegetables that I had in the fridge.
October 1, 2003. I was admitted to the hospital on September 22. I may go home next week!! I had extreme difficulty in breathing and was diagnosed with GVH of the lungs. I had an Echocardiogram, a Pulmonary function test, a Stress test (Chemically Induced), an Electrocardiogram, a CT scan of the lung, a Bronchoscopy, an ultrasound of the liver and lower right lung, and a vascular ultra sound of the right arm which had become swollen. They checked for a blood clot in the arm. The test was negative.
All of the above listed tests were negative and ruled out other causes for her breathing problems. My comment was "Finally a diagnosis!!!!!". The diagnosis was GVH (graft vs. host disease of the lungs). A new nurse was in training in the transplant wing. Well, Margie and I hit it off. We laughed all the way through the lung GVH. Really, laughter is the very best medicine.
The doctors put me back on the nasty Prednisone. I did not like being on this drug, because of the past experience with hip and joint pain. I told Ross that I might have to relent and use a walker.
October 31, 2003… I checked back into the Bone Marrow Transplant unit at the Medical College of Virginia on Monday, October 27. My blood sugar had shot up to 600. I probably should have been in a coma. Not me!!! I had extreme mobility problems. I could not climb steps, had difficulty walking and could not get out of a chair unless Ross pulled me up. The problems were caused by the Prednisone. I was extremely weak and required assistance in performing basic tasks.
While in the hospital, I received physical therapy to strengthen the muscle groups that would allow me to sit up and do less labored leg movements until the initial drug that has caused some of these problems can be reduced sufficiently or eliminated. I am working with large rubber bands to strengthen legs and arms so that they become stronger and more usable. This was the only time that I was extremely depressed and wanted to quit. After two days, I realized I had too much to live for and decided to continue the fight. It did not hurt that Dr. McCarty gave me a big lecture.
They are trying to reduce or eliminate some of the many different drugs I am taking. Because of the blood sugar problem, I was placed on insulin to bring the level into the 100-150 range. Once the Prednisone was eliminated, the blood sugar would return to normal.
I will write again soon,
Love,
Shirley
December 22, 2003
Dear Friend,
December 4, 2003…The Prednisone continued as did the insulin with a shot each morning administered by Nurse Ross. The Prednisone also affected my legs again. This time it wiped out all the muscle use of my legs from the knees to the hips. I could not get out of a chair without Ross pulling me. I had to resort to sitting in the computer chair (as high as it would go) with a pillow or two on it. Walking became almost impossible. I had a couple of down days in the hospital (big time pity party) and felt like a burden. I came home to a hospital bed and a walker and was supposed to have a physical therapist. I was at home for two weeks before I had a therapist. I did many the exercises on my own. I came home on November 6.
I set a goal to make it to the main level (kitchen, dining, living room level) by Thanksgiving. On arriving home, I could lift my left leg about 2 inches. On Thanksgiving Day, I made it up the four steps to the dining area for dinner. Of course, I used the railing to help drag me up the stairs. I saw the therapist once a week and progressed to walking around the back yard without the walker.
When I went back to the clinic, I had to show off for the nurses and doctors by walking the long hall without the walker. The following week I managed to get to the bedroom level of the house. I mastered the 10 steps up and down. I got up by pulling on the railing with both hands. The following week, I mastered walking up and down the driveway hill. By Christmas, I planned to be finished with the hospital bed and be back upstairs at night. The Prednisone takes away, and stubbornness and therapy return the muscle use.
The lung GVH had not returned and my skin GVH has gone. I had another bone marrow biopsy while in the hospital, and the transplant has held, I am cured of the Myelodysplasia. I am still my sister!!! I have her DNA and blood type. I now must take allergy medicine. I even lost my loud Mason sneeze and have a dainty little one. Oh, I am now a size 10-12. In fact, the nurse called me today and said that because of Monday's blood chemistry results; I did not need to keep my next appointment. I hope that my visits return to once a week.
As I look back on this year, I have decided that if I had to make a transplant choice again, I would do it all over. A transplant patient never knows if GVH (graft vs. host) will show its ugly face or not. I still have too much fight to give up.
December 22, 2003…This a busy time for you, and I hope your holidays are happy ones. This will be my last letter of 2003. Part of my family will be here for Christmas. Kim and her son, Tyler, are coming from North Carolina, and Scott is flying in from California. Kelli and her family will have their Christmas at home in Georgia.
Today was bone marrow clinic day. All of the news was good. I took my last Prednisone today. I have been on insulin since shortly after starting the Prednisone. The doctors said that the blood sugar problem was caused by Prednisone, and the sugar problem would go away. Today when we checked the sugar levels, they were normal and I did not need the insulin. My blood counts were normal. I had been getting a three-hour IV of immunoglobulin every four weeks, but no more for at least three months.
I may have mentioned at one point that I had to receive a drug through a pump for eight hours a night for iron overload caused by 2 1/2 years of blood transfusions. My doctor took me off the drug about two months ago, but I still have the iron overload. The other way to remove the iron is by drawing blood and throwing it away. Now that I am a different person and producing blood, they can draw blood. One unit will be drawn and thrown away every other week to eliminate the iron. I have no signs of GVH (graft vs. host disease). It is also official, the last bone marrow biopsy shows that I am now 100% my sister.
My physical therapy is going well. After Christmas, I will move back to the upstairs bedroom. Using the railing to pull on, I can now go up the ten stairs. I can get in and out of the bed. The hospital bed will be returned after the holidays. I will go upstairs at night and come down in the morning. I can now walk most of the time without using the cane. Oh, I can also stand up from any chair in the house. I do not even have to put a pillow in the seat.
The doctor was pleased when he saw me walking the halls today. He held out his hand. I hesitated and then told him that I did not do hands or doorknobs. I asked when he last washed his hands, and then I shook hands with him.
Have a wonderful holiday season. Give my love to your family.
Love,
Shirley