It’s June 14, 2005, and I am currently seven months post transplant. I am at home, taking time off work to recover. I am feeling very well, except for occasional lack of appetite. My energy is not what it used to be but they say it can take a year or more before you are back to normal energy. I get out for a 30-40 minute walk almost every day, and last week I even rode my bike for the first time this year. I am currently still taking Cyclosporin (150mg), Coumadin (because I still have my Hickman Catheter and this keeps the blood from clogging it), Altace (for high blood pressure), 650mg of Calcium three times per day, 835mg of Magnesium three times per day, Septra (an antibiotic) three times per week.
My transplant schedule was as follows (2004):
October 31: Start taking Dilantin to prevent possible seizures from Busulfan Chemotherapy.
November 1-7: Take Dilantin 10 p.m. I was told to shower often when taking this drug as it causes some patients to itch. I did shower often, and had no itching at all.
November 1: Start taking a 24-hour urine sample not with this female Whizz Kit.
November 2: Went to Toronto General Hospital to have my Hickman Catheter inserted in my chest. Catheter is used to receive medications and to take blood samples.
November 3: Hickman dressing change at hospital, begin Busulfan Chemo as an outpatient.
November 3-5: Busulfan Chemo. I did not find this chemo made me sick at all.
November 6: Admitted to Princess Margaret Hospital, received final dose of Busulfan. I had a private room, with a bed, two chairs, and an exercise bike. It had an ensuite washroom with a stand-up shower and a bidet. I was emotional and scared the first day in hospital, with the fear of the unknown, however I found my room comfortable, bright and clean. I put on clip in extensions for me to be presentable for my family. A loud fan noise could continuously be heard, as they have a dust filtration system.
November 8-9: Cyclophospamide Chemo. I did have occasional nausea and vomiting from this drug. I experienced a sore throat at one point. I also had days of extreme fatigue. Great thing is, with the push of a button, a nurse would come in and give medicine to ease the side affects.
November 11: Day of stem cell transplant. I was nervous, but ready. They gave me some pre-medications which made me feel nauseated. I was saying some silly things at times, due to medication. One of the songs which kept playing in my head was “I Wanna Be Sedated.”
I had the transplant at 3:30 p.m. when the doctor injected my father’s stem cells through my catheter. It was not a bad experience: However I do recall my throat feeling extremely sore during the procedure, almost like swallowing needles.
Not long afterward I was feeling like my old self. I was chatting with my mom, sis, husband, and sisters-in-law who were all waiting outside my room. I even emailed the folks at work to let them know everything went well.
I remained in the hospital until December 6. During this time, I experienced side affects such as insomnia (for which I was given medication) and an extremely sore throat. I was not even able to swallow my own saliva for a few days. The nurses set up a machine allowing me to suck the saliva out of my mouth since I could not swallow it. Gross, but effective. They also set up a morphine drip to ease the discomfort of my sore throat. I also had some sores in my mouth, and my gums were swollen. When my gums bled the team gave me a transfusion of platelets, donated by some wonderful blood donor out there.
I spent my days in hospital chatting with my mom and my husband, Paul; watching TV; listening to music; emailing friends on the laptop; and reading. I also used the exercise bike from time to time to keep myself active. I could not peddle fast or hard, but a little was better than nothing. Also, since I was in isolation for a few weeks the bike helped me to keep moving. I did experience a bit of cabin fever and anxiety from time to time.
At one point while in hospital I developed a very itchy rash on my back. The doctor took a skin biopsy and determined it was Graft vs. Host Disease of the skin. I was a little relieved, since I was told that a little GVHD is good, in that it means the body’s new stem cells are in place. It also means the body is in fighting mode and may also fight off any cancer.
On November 19 I asked a nurse shave my head as my hair was starting to fall out from the chemo. My mom said I reminded her of when I was just a little baby! I didn’t mind losing my hair and wore cotton caps because I found it quite cold with no hair.
The actual act of having my head shaved was more uncomfortable than I would have imagined, it almost felt like my hair was being pulled out! I didn’t mind having a bald head; I was pretty mentally prepared for it. I couldn’t get the Sinead O’Connor song “Nothing Compares to You” out of my head for a while. She’s a well-known bald female singer.
Every day, several times a day, my vital signs were checked which was a routine procedure. Blood pressure, temperature, and weight were checked routinely. At one point my temperature was higher than 38 degrees, so I was sent for a CT scan to rule out pneumonia. Fortunately, I did not have pneumonia and the fever subsided.
I was very fortunate to have the support of my mother, who put her life on hold in Newfoundland for three months to come to Ontario and stay at my side throughout my whole experience. My husband, Paul, was also with me every day. As for my dad, he gave me the gift of life–twice–and I can’t thank him enough! My sister and my husband’s family were also angels by my side.
June 2005: I had my six-month post transplant CT scan, and it showed no signs of cancer! I did have one residual lump in my groin which was biopsied, and found to be scar tissue only from an old tumor.
It’s now August 4, 2005, and I am still off work and at home. I am down to just 100mg of Cyclosporin, twice daily. The only minor complaints I have are a rash on my arms, legs, and back; and a dry cough. I see the doctor at Princess Margaret Hospital every two weeks for follow-up. They constantly check my blood to ensure everything looks good. I still have my Hickman Catheter (it’s been 10 months now!) and will keep it until I am off Cyclosporin completely.
Later in August: the doctor put my Cyclosporin back up to 175mg due to a rash on my back and legs. Also in August, I got my first “post transplant cold,” which took me one month to shake off. I had a terrible cough and even cracked a rib from coughing so much! It was nothing that time and antibiotics couldn’t lick! It’s nice to have had a cold, and to now know that my body could fight it off. With a new immune system, I find I’m always “testing it out.”
October 12, 2005: I am at 50mg of Cyclosporin twice daily, with no sign of a rash or any other side affect. This is the lowest I’ve been on an immune-suppressing drug, and I am looking forward to the possibility of being off of it completely! I am hoping to return to work in early November. I had my Hickman Catheter removed, almost one year to the date it was inserted. This procedure involved local anesthetic in the form of three needles. It wasn’t too bad at all. I had three stitches which were removed one week later.
This past weekend was Thanksgiving and I was lucky enough to be feeling well, and to have my mom, husband, and sister at home with me in Cambridge. We had a traditional turkey dinner at my sis-in-law’s. Life is GOOOOOOOOD!
I am feeling so great, and so fortunate! My doctor reminded me that my dad was only a 5/6 (imperfect) HLA match, which means my chances of having more Graft Vs. Host is pretty good, especially as I reduce and end my Cyclosporin. I plan to continue exceeding his expectations and am enjoying life to the fullest!