Stem Cell Transplant

I arrived home on Monday after a two-and-a-half week stint at Princess Margaret Hospital, where I underwent an autologous stem cell transplant. On Wednesday, May 28, I began my journey by having a truly horrendous double lumen port inserted into my chest at the Toronto General. As many surgeries as I have had, I will never get used to walking into an operating room. The sterile surfaces, the shnot-green curtains and scrubs and caps, the operating table you know is meant for you... I was asked to lay down and immediately started to cry. I was petrified, not only of the insertion, but of what was to come over the next few weeks. At that point it became the nurse's sole job to hold my hand and dry my tears. The surgeon, nurse and technician worked well together and the insertion was more uncomfortable than painful. I was shocked by how hard the surgeon had to jab that line into my veins, it felt like he was trying to stab a pen into concrete. Because I am petite, the line dangled below my waist, with what appeared to be two monstrous caps finishing it off. There was no hiding these puppies in my bra.

Immediately after the insertion, my husband and I walked across the street to floor 15A at the Princess Margaret, where I would be spending the next few weeks. I was surprised when the technician from the Toronto General showed up, and handed me a necklace that I had forgotten in the operating room. He had walked across the street and somehow found me on the 15th floor, and totally impressed me with his dedication and kindness. At that point, I realized that it would be the professionalism and devotion of the doctors, nurses and staff that would carry me through the next few weeks.

Because the room wasn't yet ready for me, I was asked to return to the hospital in a few hours. I went home, packed a few extra things, and returned later that afternoon and checked into a double room. My roommate seemed nice enough, although I voiced my preference for a private room, particularly because my husband was going to sleep in the room (a mattress on the floor) for the next few weeks.

Later that day, a new doctor I hadn't met before, Dr. Franke, explained that he would be treating during the stem cell transplant process and walked me through what would happen. He presented me with a calendar that stated the exact day when the side effects would start, when they would increase, and when I would start to feel better (depicted on the calendar by a happy face). I would start the process the next morning, Thursday May 29, with hydration at 6:00 a.m. Later that morning I would receive my first dose of high dose chemo, etoposide. Ah, the etoposide. Even writing about this makes me nauseated - they had given me benadryl, and that combined with the etoposide made me feel queasy and like someone was pushing my body down.

The next day I received my second and final dose of chemo, melphalan, which went better. Both times before receiving chemo, the nurses handed me an atavan, which I refused. The doctor actually tried to make me take it, saying that it would relax me, but I rejected the offer. I hate the feeling of being completely drugged up, the compulsory drugs I was taking were doing that already, thank you very much.

The next few days were uneventful, other than some nausea, which was occasionally debilitating. The kytril I was receiving for the nausea just wasn't adequate, so I was given stemytil and another drug, which together made me painfully jittery. I couldn't sit still and the manic feeling inside of me drove me batty. Eventually I was given benadryl, which somewhat helped, but after that episode I refused stemytil because I preferred the nausea over that horrible jittery feeling.

I was able to get a private room on my second day at the hospital, which was great. I decorated it, added a number of colourful synthetic flowers (real ones weren't allowed), covered the awful see-through needle disposal box with a pretty pillow case, and overall tried to make the room as cozy as possible. It was especially fantastic to have my own bathroom.

It took some time to get used to being attached to an IV pole. For the first few days I received intense hydration and had to pee every 30 to 45 minutes, including throughout the night. Each time I would have to get up, unplug several plugs, negotiate and untangle all of the lines and cords, drag the pump to the bathroom, return to the room and plug everything back in, and then rinse and repeat in less than an hour.

My stem cell transplant, Day 0, occurred on Monday, June 2. I was told in advance that during the transplant I would sense the antifreeze used for the stem cells, which would taste and smell like creamed corn. Because reactions to the antifreeze are so individual, I was not informed about the overpowering sensation of toxic creamed corn that would overtake me, causing me to wretch uncontrollably and overwhelming me with a profound and agonizing malaise. The process took about 30 minutes and I gradually recovered and regained my composure over the next four hours.

The side effects from the chemo were supposed to start on Day 3, June 5. To be honest, I didn't feel much, other than some nausea. I continued to exercise on my stationary bike, which I had bought off Craig's list for $35, and to do some fairly vigorous yoga. Gradually, I even began to discover a dance partner in my IV pole (video to follow....)

Side effects were supposed to peak on Day 7, June 9. Apparently up to 100% of people get mucositis with the high dose treatment I received, but I managed to avoid it through a combination of good fortune and obsessive mouth rinsing. Every half hour, for at least twelve hours a day, I would first gargle with a sodium bicarbonate solution for 30 seconds, and would then rinse my mouth out with a new gulp of the solution for another 30 seconds. At night I rinsed about every hour and a half or so. It was obsessive, but it worked.

However, I traded in the mucositis for something equally debilitating: perotitis. This was a blocked salivary gland - a rare side effect of the chemo that I received, which you are more susceptible to when your immune system plummets. It took a day or two for the doctor to figure out what I had. I thought it was a pain in my jaw, and gradually my ear and my teeth began to throb as well. The worst pain happened when I took a bite of a muffin one morning, which in retrospect made sense since my body naturally wanted to produce saliva despite the blocked gland. Over a couple days, my right cheek swelled like a chipmunk and the pain became an unbearable, throbbing agony. The nurses hooked me up to a morphine pump, which generally worked except nothing would help when I ate. Even drinking anything other than water caused such intense agony that I stopped eating or drinking anything (other than water) for 3 days. As my counts gradually rose, the symptoms went away as quickly as they came. My counts were great by Day 11, June 13, and the doctor said I could even leave the hospital except that he wanted to make sure I could eat and drink. The truth was that I was still petrified of eating (because of the intense pain it had caused), so they kept me in the hospital for the weekend. By Day 12, June 14, my "happy face" day, my perotitis was worlds better and the morphine pump was removed.

I left the hospital on Day 14, Monday, June 16, after the doctor thankfully removed my gargantuan port. Overall, the procedure went smoothly. I never had a fever (although hovered closely at 38.1), did not get mucositis, never had that overwhelming feeling of exhaustion, and recovered my counts very quickly. In fact, at some points I wondered if they even gave me enough chemo... The doctor quickly dismissed this by noting that my while cell counts were 0.

However, the procedure was undeniably brutal. The excruciating pain of my perotitis, the constant nausea, the 6:00 a.m. blood draws and saline clean-outs (which tasted horrible for some reason), the nauseating blood transfusions, the constant stream of nurses, doctors and staff walking in and out, sometimes without any warning (despite my "please knock sign"), the overall sickly feeling - it was all awful. But it will be worth it if it works....