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....

I will pause to rest and heal

I just read this piece and it has a lot of meaning for me. It touched me and is something I would like to share. My favourite line is: "So I will pause to rest and heal". These few words are beautiful in their simplicity and truth. I have no choice now but to take time off from my life, and to reframe this interruption as a gentle and nurturing pause is lovely.

I HAVE CANCER…

I have cancer but cancer does not have me.
Cancer is not who I am.
It’s only a bend in the road that is my life’s journey…
An unexpected detour on my path.
It is a lesson in the cosmic schoolroom that is human existence.
So I will pause to rest and heal
And study the lesson
Before I move on to my life beyond cancer.
I will not give in to fear,
And I will not be discouraged by setbacks.
Setbacks are only opportunities to review the lesson.
I will not be ashamed of my scars.
My scars are brushstrokes in the masterpiece that is my life.
I will be thankful for the many blessings that cancer has brought into my life:
People I never would have known,
Love that I had never been still or quiet enough to witness,
Humility I needed,
Strength I thought I had lost,
Courage I never knew I had.
I will remember that I can still have fun
And that it’s okay – even healthy to be silly.
I will remember that to find the joy in rainbows
I must endure the rain.
And I will remember always that
While I may have cancer
Cancer does not have me.

You can also watch accompanying pictures at "www.thesurvivormovie.com", however before cancer, I would have thought the pictures to be a little too cheesy.

They Say I'm Going to Need More Chemo, I say No, No No

It has been three weeks since my surgeon, Dr. Black, confirmed that my Hogdkin's has returned, or perhaps never really went away. My first encounter with Dr. Black was in May, 2007, when he performed a biopsy on the lump in my neck, which revealed that I had Hodgkin's lymphoma. I endured the usual course of treatment and began to move on with life. Yet my treatment had scarcely ended when a so-called routine set of scans in late January revealed some strange new lesions. And so, it was Back to Black for a second biopsy.

When Dr. Black called me a week later to say that the Hodgkin's had returned, I was certainly not shocked. After the ominous scans, the biopsy was almost a formality. It was only my family that was floored by the surgical results - they had dunked themselves in a denial heavily shellacked with hope.

Truth be told, I had my own suspicions that the cancer had returned even before the worrisome scans. I have this foreboding itch that actually allows me to monitor my cancer. It's somewhat like living in your very own horror movie. The Itch remained lurking throughout my chemotherapy, then flared up uncontrollably a few weeks later, and finally started to subside after starting my subsequent radiotherapy. That is, until one evening in early January when I was casually watching television with my husband. Suddenly, I felt a wave of the Itch run up my left leg and down my right leg. It was like looking around the room and seeing a fleeting shadow on the wall or hearing a mysterious creak in the floorboards, signalling that a new wave of horror wasn't far off. The Itch continued to haunt during the weeks that led up to my January scans.

So in many ways, I was prepared to hear the news from my surgeon. I knew the results of the scans were ominous and I had governed myself accordingly. I put myself in the mindset of being back in the throws of chemo, and even went ahead with fertility treatments before receiving the biopsy results. So I pretty well knew that the cancer was back, and that the treatment for relapsed Hodgkin's is a stem cell transplant.

However, there is always a difference between theory and reality. Even with all the signs flashing, until you get a biopsy result it's still all theoretical. Technically, the PET scan could have been a false positive and the lesions that had appeared on the CT scan could have been some sort of benign reaction to the radiation and chemo I had previously received. And the itch, technically, could have been just a vestige of my Hodgkin's - something that might never go away, but did not necessarily mean that there was still disease. So when my surgeon called me up last week and told me that the biopsy results showed Classical Hodgkin's, I guess you could say that while I was not surprised, I was still shocked

When my relapse was merely a possibility, I could mitigate my fears with the fantasy that the cancer wasn't really back. I could imagine that this was all a terrifying false alarm, and could envision my surgeon calling me up to tell me that it was all a mistake, it was just a benign growth. I could feel the warm and wonderful sense of relief flow through me as I heard the good news.

Three months ago, I had completed my chemotherapy and radiation treatments and thought that I could put the experience behind me and move on with my life. Just when life was just getting back to normal, my world came crashing down for a second time.

In some ways, the news this time around was far less emotionally debilitating than when I was first diagnosed back in May, 2007. When you first find out that you have cancer, you feel as if your life is being brutally interrupted, you feel the tablecloth savagely pulled out from under you. Yet when you relapse, you quickly get over your shock and move into acceptance. You reacognize that cancer must simply become a fixture your life. You acknowledge that it is not just a phase that you could deal with and put behind you, no longer a dirty little secret you could push under the rug if you chose to do so. This time, cancer didn't just rent a room in your mind - it bought a condo.

And this time, you don't know if you'll be okay. At the time of my original diagnosis, I mourned the loss of so many months of my life to nausea, fear and uncertainty. I felt like I was falling, falling into a great unknown, but that there would be a soft landing and I could ultimately dust myself off and pick up where I left off. This time, I don't mourn as much for the time I will lose to fighting this disease. I can barely mourn for the years that will be snatched from my life due to the toxicity of the treatment I will require this time around, that is, if the treatment even works. My innocence, my carefree life disappeared when I was diagnosed the first time around, and so this time the shock, bewilderment and anger just aren't there anymore in the same way. I can no longer get angry at cancer. Now, cancer just is. When cancer comes back, it officially consumes you. Your chances of recovery are often decreased. The risk of other cancers down the road increases.

Cancer has become my new job. I don't go to work anymore. I go to chemotherapy. That is what I do. I get nauseated and puke. I rest. I try to eat. On good days, I can get in a work out. I know that my energy levels won't last long, and that I will be weak for months as my treatment intensifies, culminating in a stem cell transplant followed my months of recovery.

This past Monday, I began a new round of chemo. I will need four to six weeks of so-called low-dose chemo in order to shrink the tumours and stimulate the stem cells. After that, more chemo and neupogen shots and then my stem cells will be collected for a few days. Assuming that they gather enough stem cells, it will then be time to check in to the hospital as an inpatient. The plan is to receive several days of high dose chemo which is intended to completely obliterate my immune system. The goal of this treatment is to destroy my bone marrow. Stem cell transplants are the Hiroshima of chemotherapy. After the high-dose chemo, the stem cells will be defrosted and if all goes well, they will be injected back into my blood street to "rescue" me. I will need to spend about three weeks in isolation at the hospital as my body is broken down, devastated, torn and burned from the inside out, and struggles to rebuild itself.

Sometimes I can't quite believe this is all happening. Other times, it all makes perfect sense and it is crystal clear in my mind that I was meant for this. Before my diagnosis, everything in my life was going so smoothly I sometimes could not believe it myself - I met my soulmate and had a fairy tale wedding. I have an intellectually stimulating job at a great firm.

For about a year and a half before cancer came into my life, I just remember thinking how swimmingly things were going for me and for my extended family. Everything was going so well. Bullets may have been flying around us as we heard of troubles afflicting other families, but we were all succeeding in life, careers and love. Everyone in the family seemed so fortunate. Something had to give. I knew that something had to change and I felt it in my bones. Perhaps literally. And so when I was diagnosed, it made sense in my mind that I would be the recipient of the bad luck. It is possible that this sense of foreboding that had been plaguing me for a solid year and a half was really my unconscious mind telling me that something was not quite right. Perhaps that magical horseshoe that had been stuck up my ass my entire life became dislodged. I don't know.

All I can hope for now is that this awful stem cell procedure works. It is not out of the question that the transplant could actually cure me. I am staying positive about this possibility, but cannot be optimistic. It is what it is. I hope for the best. I want to move on and be well and continue to share every day with my husband, because he is a sheer joy and is my brightest star. Maybe we could even start a family. Such a normal part of life for so many people, yet such a brazenly indulgent thought for me.

Sometimes my mind plays tricks on me. Is this all really happening? Do I actually have cancer, and is it really back? Could this all be a bad dream or am I perhaps just a brain in a vat? Do I really need more chemo - could it be true? There are brief moments in time where I am overwhelmed and struggle in this way.

Is it all gloom and doom? No. That would just be too much to handle. And besides, it would get pretty dull. I have been involved in some intense complimentary therapy in preparation for my hospital stay: retail therapy. The plan is to have several brand new, comfortable yet stylish outfits to wear. I have spent days on my shopping mission and have procured a number of loose t-shirt dresses and cool robe-like sweater scarves. Gradually, I have accumulated quite the trousseau of cute outfits for the weeks I will be spending away from my husband and instead with that other force in my life that has swept me off my feet. I know that cancer doesn't care how I look. But if anything can cheer me up in the face of sheer adversity, isolation and bland hospital decor, I expect it to be some fresh style and colour.

So this is where I am right now. Dealing with the magnitude of the battle I must fight, and all the while starring in my own Sophie Kinsella novel, Shopoholic Gets Cancer. I can only dwell on the fear and sadness for so long. There is only so much time you can spend contemplating your own mortality, and then, you just want to rejoin the happy people walking down Yonge street on a sunny afternoon, and just celebrate all that life still has to offer. In the words of that suddenly famous beehived-hair girl, tears dry on their own.

Bone Marrow Biopsy - Caught on Camera

I have started to document my journey into Cancerland on film, and decided to record the notorious bone marrow biopsy and aspirate. The video is divided into two parts, and reflects my second fabulous experience with this procedure, which took place earlier today.

Part I



Part II



This blog is also posted on Planet Cancer.

Putting All My Eggs in One Test Tube

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After a week of giving myself multiple injections that by all accounts made me look like a heroin addict, the grand finale of my fertility treatments was finally upon me. As I had done every day this past week, I visited the fertility clinic and was requested to, how does one put this delicately, spread for bread. However on this particular morning, the doctor was no longer simply monitoring the growth of my eggs. Today, he would be the gynecological equivalent of the Easter Bunny and collect as many little eggs as possible through my bulging ovarian baskets.

Thankfully, I chose to undergo the procedure under general anaesthesia, since there is something about poking fourty odd holes in my ovaries while awake that just doesn't sit right with me. My hubbie calmed me before the procedure and fed me chicken soup after it was done. Of course it was a big day for him too, and he valiantly performed on demand to produce his noble contribution to the cause. Despite the fact that these embryos have found their start as test tube babies, there is still something magical about the process and we both felt an undeniable sense of glee and awe at the reality of what was going one. These little guys (or gals) are just cells sitting on a shelf for now, but they could one day be our future children, waiting until the right time to make their entrance into this world.

It's My Parody and I'll Cry if I Want to

Lying down spread-eagled, clothes slumped haphazardly over a chair, brimming with hormones and ready for a large object to be inserted into your nether regions may sound like a perfectly delightful, deliciously lustful way to start a 31st birthday. But when you are lying on your back in that most compromising position in a sterile doctor's office, your feet inelegantly splayed in stirrups, and the object in question is an ultrasound device designed to assess how your eggs are growing, you don't exactly feel like Bringing Sexy Back. Nor are you, at that very moment, particularly into doing it like they do on the Discovery Channel. But you do feel a lot like an animal. Like a fish that has been pumped with hormones to produce enough caviar to feed a small country. Or like a chicken injected with drugs to generate extra, extra large eggs. Or like a cow given a boost of chemicals to enhance its milk supply. You get the point.

And when the plan is to have your eggs fertilized and then frozen until you are in remission from a relapse for Hodgkin's Disease, assuming remission is even achieved, the ultimate goal of these fertility treatments, which is to produce a Baby-Gap clad bouncing bundle of joy, feels virtually unattainable and almost ethereal.

Between getting cancer and worrying about related fertility issues, and now having what by all accounts appears to be a relapse, things have not exactly been looking up for me. To make matters worse, on this particular visit to the McGill fertility clinic, I was flying solo, since my hubbie had a meeting back in Toronto and had to miss my appointment. Having no desire for my doting parents to accompany me to the exam (I have my pride...), I went to the clinic alone.


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To top things off, it was my birthday. As I lay down with my loins spread open, the doctor carefully measuring the size of my follicles (the sacks that contain eggs) on the computer screen, making vague attempts to engage in polite chatter, I made the decision that this year, I was going to have a non-birthday. Because most of my thirtieth year had been spent in hospitals enduring mildly unpleasant to downright painful procedures, and feeling like a toxic waste site (and one that is, moreover, dangerously back-up) from all the chemotherapy and radiation and anti-nausea medication, I concluded that this year would simply have to be a re-do, at least from an emotional perspective. Like a major tax write off, my 30th year would simply be wiped out and I would have another go at it.

At the end of my appointment (which had been interrupted by a fire alarm), I asked if the doctor who had been following me would be available for the final "collection", the procedure where the eggs are all sucked out through a small needle aspirate. The day of collection is timed to precision based on the exact point when the eggs reach maturity but before ovulation, and for me, that day would fall on a Saturday. The doctor explained that he would be away that day, so a colleague who was on call would perform the procedure.

I left the hospital, simultaneously inflated with dozens of ripening eggs and deflated by the final blow I had received, that some unknown doctor was now going to be responsible for sucking out my potential future children. As I walked down the hospital hill towards the street, the icy February chill numbing my fingers, the daily fertility injections causing me to feel at times totally erratic, and at times strangely erotic, I did the only sensible thing to be done under the circumstances: have a good long cry and wallow in self-pity.

Back in May, 2007, tests were well underway to determine the cause of the mysterious lump on my neck. I spent weeks looking like the Michelin Man with a huge bandage plastered on my neck from my biopsy, and went through a round of fertility treatments once the diagnosis had been established and chemotherapy was imminent. Now, nine months later, I have another ominous lump on my neck and the test results do not look good. It must be some cosmic joke that I am getting these lumps at the right intervals but in the wrong places - how much nicer it would be if they had only been larger and on my tummy...

So I have found myself going through another round of fertility treatments in order to gather some more eggs before receiving the aggressive chemotherapy it is expected that I will need, and about to embark on another surgical adventure to remove the brand new node from my neck. This whole thing feels a lot like Groundhog Day anyway, so why not just have another go at being 30?

Back to Work: The Cancer Vacation is Over

Yes, it's been a while since my last post. As they say, no news is good news. The holidays came and went, and involved staying at my husband's family cottage along with about 25 other people, including seven children under the age of eight. (Like clockwork, a new critter has been born into the family each year for the past seven years). Then there were two dogs, one of which perpetually had drool icicles hanging down his jaws. Whenever the dog would shake his head vigorously, in the way that dogs do, the stretchy saliva would haphazardly land on a stairwell or on the water cooler. Add to the mix some mice and throw in the stomach flu, and you have yourself a party.

I returned to work on Thursday, January 3rd, after barely recovering from the stomach flu that I had managed to dodge until New Years day. Between chemo and the stomach virus, I now consider myself an expert in puke. There are many different types and styles of puking, which vary based on the individual but also the cause. The stomach flu, for instance, can involve some truly impressive projectile vomiting, whereas chemo vomiting is more controlled. If you aim for the toilet, it all gets in.

But enough about that. Work is going well. It was inevitably awkward to return after a six month hiatus, and on my first day back I stayed close to my office, a little anxious to stray too far away from my home base. By the second day things already began to feel normal again. I received the usual array of odd comments. During a brief encounter in the washroom, a partner on my floor said: "I haven't seen you around in a while, guess you've been hiding in your office!" Then there were those who gave me the old bait and switch, the bait being a sympathetic call asking how I am, and the switch being the part where they ask me to work on a new deal. The best was the frantic call I received on Friday at 4:30 p.m. about a new deal that needed all documentation prepared for Monday morning.

The bottom line is that most people are self-interested. When you return to work after having something like cancer, expect very little sympathy. Your doctor may want you to take it easy for the first few weeks just to ease back into things, but in practice if you say no to too many things, you are bound to stir up some discontent.

That being said, several people took me out for lunch to welcome me back to the firm, and others dropped by just to see how I was doing. Overall it is good to be back, because it means that things are getting back to normal.