One Hundred Days

Well, today is the day. Day One Hundred. As predicted, nothing incredibly epic happened today, aside from the fact that I took both my kids to Ikea, by myself, and we all emerged happy and unscathed. (Trust me, this was a big deal.)

I have learned a lot over the last few months, so I thought I would share a few things that I now know, after one hundred days.

1. Eyebrows and eyelashes are critical to looking human.

Laugh if you must, but without hair and eyelashes, and especially without eyebrows, we would all look like aliens (or like the Observers from Fringe). I can attest to this firsthand, after watching my eyebrows and lashes slowly disappear from the lethal pre-transplant chemo and radiation. My eyelashes didn’t completely fall out – I probably had about five lonely lashes on each eye. But try putting mascara on that – it looked like a spider got trapped and was waving sadly from underneath my eyelid. Now that my eyelashes are back, I spend a luxurious thirty seconds every morning curling them, just because I can.

2. What doesn’t kill you doesn’t always make you stronger.

Despite what many pop artists may claim, sometimes what doesn’t kill you just makes you really, really weak. Sure, I may be stronger in spirit (after being crushed), but my body is the weakest it has ever been in my adult life. Some parts of me are permanently damaged from chemo and radiation. I will be dealing with the fallout for the rest of my life. I choose to be stronger, but it wasn’t the radiation that made me that way. In fact, I found out later that the dose of total body radiation I received is one hundred percent fatal within a few weeks without “radical” intervention such as a bone marrow or stem cell transplant. (I’m glad I didn’t know that before I went under the beam.) That almost killed me - and I'm pretty sure it did not make me stronger.

3. To your kids, sometimes even 24/7 is not enough.

Now that I’ve regained a lot of my strength and am about seventy-five to eighty percent of my normal self, my kids cannot get enough of me. They have turned into barnacle babies. My daughter literally hangs onto my leg as I drag her around the kitchen trying to make breakfast. My son comes into our room in the middle of night wanting to snuggle. When I read stories, he burrows into me so hard that I think he is actually trying to crawl under my skin. I go to the bathroom and within seconds they are both banging on the door. All of this makes it very hard to balance my need for personal healing time and my children’s need for their mama. The kids win out almost every time.

4. There are many different kinds of tired.

I have now experienced too many of them. There is the “I stayed up all night to write a term paper” tired. Easy peasy. Then there is the “my son got up five times three nights in a row” tired. Not so easy. Then there is the “my daughter has been waking up every hour for the last two months” tired. Total hell. This is where you get into brain-cell killing fatigue. And then there is the “my doctors killed me and brought me back to life” tired. In my vast experience with sleep deprivation, nothing quite tops this last one. After three months, I am only barely shaking the all-consuming fatigue, and they tell me it will take a full year to recover. So… don’t call me after nine. I’ll be asleep.

5. I am not invincible

This may seem obvious, but until you almost die, I think most of us have an underlying, somewhat naïve feeling of invincibility. And by that I mean that many of us, including my pre-cancer self, believe that we are going to live until we’re eighty or ninety. We believe we’re going to watch our kids grow up and that we’ll dance at their weddings. We believe that we’ll be there to see our grandkids, and maybe even great grandkids. We believe that we’ll celebrate fiftieth anniversaries with our spouses. And then cancer comes calling and those beliefs come crashing down. Suddenly we are faced with death, faced with the unthinkable idea that we might not live until we’re eighty, that we might not even live until next year. I will never again be able to blissfully believe that I have all the time in the world. It is a type of innocence lost forever, and I wish I could have it back.

I have learned many other things, like how wonderful my friends and family are, what a strong person my husband is, and what incredible parents I have. I have learned how incredibly generous people can be. I have learned that I can be funny even when I don’t feel funny, and I’ve also learned that sometimes I am simply not funny at all. That’s ok. Cancer is rarely funny, we just make it seem that way so that we can survive it. And so far, I’m surviving. One hundred days and counting.

Reconstruction

I have less than three weeks before I hit the critical one hundred days post-transplant. I know that nothing epic will happen on that particular day (except perhaps a good celebratory dinner), but it is still a hugely important milestone.

For one thing, it means that I will be out of the most acute recovery zone. I will not be “out of the woods” so to speak (that takes years), but I will be able to get off most of my medications and live a bit more normally.

And by “more normally,” I mean that maybe I can eat a breakfast that is bigger than the mountain of pills I take each morning. Maybe I can pull my wallet from my purse without a vial of heparin popping out onto the counter. (Yes, that really happened.) Or perhaps I won’t have to explain to perfect strangers who just had to know where I get my hair cut that it’s actually a wig.

But reconstruction is one tough gig. First there are medications, supplements, green smoothies, huge salads, and litres upon litres of water. Then, to gain weight, there are avocados, hemp seed, peanut butter and protein shakes. Then, to gain muscle, there are lunges, squats, sit-ups, bicep curls, hikes, walks, and the infamous shuffle. And, to gain everything else, there is prayer. There is always, always prayer.

I will readily admit that on some days I just sit around and do nothing. I skip strength training sessions just like I did before I was sick (it has never been my favourite thing). But I cannot be this hobbling, weak waif forever, and not only because I am way too old to start a modelling career. So I walk, I eat, and I lift my paltry two-and-a-half pound dumbbells. (Yes, you read that right. I have been reduced to weights that my grandmother could probably juggle.)

This is all very humbling for a woman who once ran over seventy kilometres a week, did power yoga, and hit the gym on a regular basis. It is very tempting to wallow in self-pity and stay on the couch watching The O.C. re-runs (don’t judge). But I walk my forty-five minutes almost every day. Some days I get pretty far in those minutes, other days I don’t. Some days I even run-walk. It can be a monotonous grind, but on those days, I just remind myself of the time in the hospital where I couldn’t even stand up. I remember that and think of the people still on the ward, and I keep going. I have a chance now to rebuild myself the way I want – from skin and bones to muscular and fit – and who gets a chance like that?

So I pray and meditate and try to figure out where my life went wrong. Regrets come in hard and fast. What if I had done that, or this? What if I had not done that? I try to remind myself that this cancer is not my fault. Sometimes that’s a hard thing to remember.

I rebuild in teeny tiny pieces. There are days when I hate it, when I am sick of being so tired and weak. There are days when I wish I could erase it all and be in Ecuador where I was supposed to be this fall. But most of the time I try to live where I am. I cannot change what happened, but I can reconstruct myself. And that’s exactly what I’m going to do.

Bows and Marrows

My son asked me the other night if my “blood cell factory” was working again, and that reminded me of this blog post – one I meant to write long ago but didn’t. I just couldn’t.

Talking to children about illness, after all, is not something in which I am an expert. In fact, when the social worker gave me a book titled “When a Parent is Sick,” I instantly recoiled. We were not that family. And yet, devastatingly, we were.

The book was a knife to my stomach. It had ways to explain death and dying to children of every age. I nearly tossed it across the room. I was not going to tell my four-year-old that his mommy might die. That was simply not happening. But I didn’t want to lie to him either. He was old enough that he should know what’s going on. Besides, he is very clever and a master eavesdropper. Eventually he was going to pick up on what the grown-ups were saying.

So I sat him down to have “the cancer talk,” admittedly very angry at God that I had to have this talk at all. But we all have our roads to travel, and this was mine. I had found a video online from a children’s hospital that explained leukemia with all types of candies, and then I found another video that explained bone marrow (calling it a “blood cell factory”). My son looked from me to the videos, wide-eyed and nearly silent the entire time. Clearly he knew this was serious business, because for my son, being silent at any time is practically miraculous.

Finally I asked him if he had any questions.

“Do I have leukemia?” He asked. The mere thought of it tore my heart in half.

“No, baby, you don’t have leukemia. It’s very, very rare. You are not going to get leukemia.”

“Does Daddy have leukemia?”

“No, baby, Daddy doesn’t have it and he’s not going to get it.”

“Well then why did you get it?”

This was the part I was dreading. I could not explain to my son why I got leukemia because no one knew. I couldn’t explain to him how he could avoid it, or how I could avoid getting it again, because no one knew. It was infuriating. All I could tell him was that it was very rare. But how does a four-year-old understand “rare”? His mommy and daddy are his whole world. If Mommy can get it, then half the world can get it too.

But he seemed to accept my attempt at answers for the time being. We watched the videos again (upon request), and then he only had one more question:

“Mommy, when do you get your new bow and arrow?”

Well… I did my best. Clearly I couldn’t expect him to grasp it all. And I should have known that he would somehow turn it all into a weapons issue.

Come to think of it, I never did get any new weaponry along with my transplant. Perhaps now it’s time.

Random Hospital Hilarity

This blog would not be complete if I didn’t include at least one entry of random moments in the hospital that were simply too funny to keep to myself. I love people-watching to begin with, but people-watching at the hospital is pure gold. Sure, there are weird people everywhere, but people at the hospital are an entirely different level of weird. (You nurses especially know what I’m talking about.)

One glorious example happened when I was waiting to be picked up at the main entrance. First, there are No Smoking signs plastered all over the entrance, and the smoking area is across the parking lot. Second, people often violate this rule. Third, on this particular day, I was very cranky, and I have little tolerance for smoking at the best of times.

So… I was waiting for my ride and I smelled smoke. This made me irrationally upset and I immediately looked around for the culprit. I saw a woman smoking about three metres away from me, right underneath a No Smoking sign.

I went up to her, extremely annoyed at her disregard for the sign.

“Excuse me, lady,” I said, a tad too sharply. (Yes, I actually called her “lady.” Like I said, I was cranky.) “You cannot smoke here. There are tons of sick people waiting for rides and we are all inhaling your smoke. Besides that, you are standing right in front of a No Smoking sign.”

She half turned, but didn’t make eye contact, and said, “I’m blind. I can’t see the sign.”

Yes, this really happened. I had practically said, “Can’t you see the sign?” to a blind woman. I wanted to dissolve into the sidewalk. At least ten people had seen this go down, and I went from vigilante no-smoking enforcer to the woman taking a strip off a blind lady. It was mortifying. After I took a few seconds to recover, I helped her over to a different area where she could smoke (because God forbid she would actually put out her cigarette).

Not even five minutes later, a different woman came out of the entrance and asked me if I had a cigarette. I burst out laughing. I was at a hospital wearing a scarf on my head in forty-degree heat. I was clearly a cancer patient.

“Did you just ask me if I had a cigarette?” I asked, dumbfounded.

“Yeah,” she snapped. (I guess I wasn’t the only cranky person that day.)

I laughed and gestured to my scarf. “Do I look like someone who should be smoking?”

She just stared at me blankly, still waiting for an answer. Clearly her observational skills needed some more development. So I directed her to go join the blind lady in the designated smoking area.

Not to be outdone by those two fabulous women was the young man in his twenties with whom I had the misfortune of riding the elevator. He was wearing a zip-up hooded sweatshirt, fully unzipped, with no shirt underneath. He had a sideways ball cap and matching sweatpants on, and a tube was popping out from the waistband of his sweatpants, running down his leg and straight into a bag of urine that was dangling from his ankle. In fact, his pant leg was hiked up so the bag was fully visible and hanging free. Yet he walked out of that elevator like he owned the place, pee bag or not.

He was going the same place I was, so I ended up following him outside where a group of friends was waiting for him. I have to wonder – if you are meeting some friends that are kind enough to visit you at the hospital, would you not go to a little trouble to hide your bag of pee? Quite the contrary, it seems. This young man immediately pointed out his urine to his friends (as if they could have missed it), and went on a very spicy rant about how the nurses kept telling him that he “didn’t know how to [insert gratuitous swearing] pee.”

This man was not letting the hospital wreck his swagger, I’ll give him that.

So there you have it. Nothing profound today, just random moments of hilarity from the hospital. If you are ever bored, or if you are a writer or actor searching for a new character, I would highly recommend the main entrance of any hospital. I am quite sure you will not be disappointed.

I Had Leukemia

Carefully note the past tense. See you later cancer, you are not welcome back. Of course, we will never know if I’m completely cured, so that unknown will always hang over me. I also have a very long road to recovery, with many more potential complications and speed bumps. But for now, I cheated death. My donor saved me. The new bone marrow is working. And hopefully, with time, that new marrow will become my own, cancer’s threat will fade, and this nightmare that I’ve lived for the past six months will slip further into my memory.

My four-year-old son told me yesterday that he was proud of me. For what, I wondered. He didn’t really have an answer. He was just proud of me.

Maybe he instinctively knows that I have been through hell. Maybe he knows that I went to the brink of death and then clawed my way back, thinking of him and his sister and his dad the entire time. Maybe, on some level, he knows that I said “No thank you” to death’s invitation (only I wasn’t that polite, and there were definitely some curses involved). Maybe, somehow, he knows that I’m still struggling, that it still hurts, and that I still need lots of hugs and kisses. Four-year-olds can be very wise.

I am now in the fragile, treacherous ground of post-transplant recovery. Every change in health, every rash, fever, cough, or sniffle must be documented and investigated. I am so tired that, like a newborn, I usually need a nap about two hours after I wake up. When I am awake, I am not always coherent. I walk like a little old lady (really, I do). But every day seems just a little bit better than the last, and so I cling to hope.

I had leukemia once. It's a horrible story that I'm not going to tell very often. But next year on June 27^th I’m having a (re)birthday party. Mark it down. Save the date. 

It’s going to be a big one.

So...Are You On Any Medication?

Last week I had my official pre-transplant consultation, and one of the big concerns that came up was my weight. I’ve lost about 10 pounds off my “normal” weight, but I was fairly thin to begin with. Now I am right on the cusp of being officially underweight. On Thursday last week, the doctor told me that I could expect to lose at least another 10 pounds during the transplant process. Then she gave me a five-second once-over and sighed.

“Ok.” She said. “Your job before you start chemo is to gain as much weight as you can, so that you have some reserve.” (Apparently you can be too skinny.)

I looked at her. “So… you want me to gain a whole bunch of weight in the next four days?”

Pause. “Yes, as much as you can.”

Well, all right then! Bring on the nachos! Avocado! Peanut butter!

I did my best, but five days later and I only managed to put on two measly pounds. When you don’t eat meat, gluten or dairy, and you’re supposed to stay away from sugar, saturated fats, processed foods, and refined carbs, weight is not that easy to gain. (I know, “boo-hoo” say all of you trying to lose weight. But I would take a little excess fat over leukemia every day of the week.)

However, yesterday I got home from my first day of pre-transplant chemo, and along with a truckload of other medications, I am back on steroids that always make me ravenously hungry. So perhaps I can gain a few more pounds before losing it all.

The first day of pre-BMT chemo was fairly anticlimactic considering the huge red letters it has had on our calendar for the last few weeks. Half an hour of IV chemotherapy, some consults with the doctor and pharmacists, and that was it. But what I wasn’t expecting was the enormous bag of drugs they sent me home with. Decadron. Zofran. Ursodiol. Dilantin. And that’s less than half of them. For a woman who has rarely taken prescription medication, I must admit this is hugely overwhelming.

It went a little like this:

“Take this one in the morning with food, but this one in the morning on an empty stomach. Take this one in the afternoon with a snack, but away from other medications. This one will make you drowsy. This one might give you jitters. Take this one at dinner, but away from any calcium or antacids. Take this one at night with food. Take this one at night away from food.”

I wish I were joking. My medications schedule is like a bewildering and somewhat cruel matrix that you need superpowers to decipher. (Good thing I'm getting radiation soon. Maybe that will help with the mutant-superpower thing.) Add the drowsiness-jitters-anxiety-nausea from all the medications, and it will be a miracle if I get it all right. And then the pharmacist laughed and told me that “more are coming.” People around here have a very strange sense of humour.

I too am joining the ranks of inappropriate hilarity. What I found particularly funny is when I saw a new counselor last week and she asked me if I was on any supplements or medications. I laughed.

“Um… do you want them alphabetically or by colour?”

I feel like I am on every medication. And next week they will add more.

But somehow I will make it through. Because I have to. Yesterday might have been Day One of killing Rachel, but next week will be Day One of my rebirth. Until then, I will be busy pill-popping. I know, I know. I said I don’t do that kind of thing. But there is a distinct difference between pills to protect your kidneys and pills to knock out your senses. If the kidney medication does both, well… win win.

So if my writing gets worse or more nonsensical over the next few weeks, or if (God forbid) I start to have spelling and grammatical errors, then please, let’s chalk it up to the medication, shall we?

Shuffling Along

Before cancer, I considered myself an athlete. I was not elite-level by any means, but I ran with an amazing team of very fast women and a great coach. I ran my first marathon right before my son turned one (not fast, mind you, but I still ran it). I broke 20 minutes in a 5k race the summer he turned two, and that same year I won a trail race for the first time. I never ran track in high school or university, so when I joined the racing team, interval and track workouts were entirely new to me. I loved it. I loved the lung-heaving, muscle-burning feel of a tough workout. I loved chatting with the girls on really long runs. I especially loved tackling tough uphills and technical downhills in the trails.

But getting cancer put a major kink in my running plans. Suddenly I was in the land of the sick and sedentary, and I was in major endorphin withdrawal.

Among many other things, this summer was supposed to be my comeback year after pregnancy (in my own head, that is. I’m quite sure no one else was counting the days until my “comeback”). In any case, this was my year to get back into awesome shape, run some really fast 5ks, and tackle some fun trail races before heading to South America. Now, I’m happy when I can complete a 40-minute walk, and I never stray far from home. But I’ve been feeling pretty good lately, and I’ve been itching to run. I am acutely aware that I have a few precious weeks of feeling good before they hit me with industrial strength chemo. I know, however, that low platelets and pounding the pavement do not make good bedfellows. So I walk.

After two rounds of chemo, I’m now waiting for my bone marrow transplant, which is scheduled to happen in a few weeks. At my last doctor’s appointment, after an hour discussing clinical trials and radiation and other Very Serious Things, he asked me if I had any more questions. So I said: “Yes. Can I run between now and the transplant?”

You could have heard a pin drop in the room. There was an absolute stillness as the two nurses and the doctor stared at me like I was a total nut. After a very long pause, the doctor said: “Well… no one’s ever asked me that before.”

The final consensus was that yes, I was allowed to run, though I could tell they thought I was crazy. Maybe I am. But I am not about to lie around like a lump, crying and waiting to die.

So during my first “run” last week, which was more of a power walk with a few breathless shuffles in between, I imagined what racing with cancer would look like. I could get electrolytes pumped straight into my chest catheter (no water stations required!). I would schedule races right after blood transfusions so I had extra energy (legal blood doping!). I would run fundraising races for cancer and collect the proceeds at the end (thank you very much!). It would be awesome.

And then I stopped after only a few minutes, chest heaving, muscles burning, humbled and overwhelmed at my lack of fitness. Maybe racing will have to wait until after cancer. I do have some sense, after all.

But I won’t quit. So if you see me, skinny, bald and panting, shuffling along the local paths, please don’t call an ambulance. I don't need medical attention. I'm just “running.”