You Have to be In It...

As optimistic and determined as I have been through this cancer journey, I will readily admit that I have my off days. Most of the time since I was discharged, I’ve just been living my life as best I can amidst frequent hospital visits. I rest, walk, read and enjoy my family. But every once in a while, I have a Really Bad Day. Usually those are the days where my mind goes into cataclysmic mode, where an infected blister means I’ll lose my foot, a runny nose means a deadly virus (obviously), or I imagine myself as a widow if my husband is a half hour late. Without doubt, this kind of thinking is not helpful to recovery.

Then, in the midst of this funk, I get bombarded with overwhelming information and impossible decisions. Radiation or not? Clinical trial or standard treatment? Door Number One has a laundry list of scary side effects. Door Number Two has different ones. Door Number Three is locked.

So how do you get out of such a black cloud? Caffeine, alcohol, saturated fat and sugar are all out for me. Exercise is a possibility, but I can't work out hard enough to really make a difference. Sedatives are an option, as are some pretty strong painkillers, but pill popping is not really my thing (plus it is so passé).

There is, of course, the “It Could Be Worse” game. And believe me, it could always be worse. My children aren’t starving. I don’t live in a war zone. I still have my legs. I haven’t been abducted by guerrillas. Or gorillas. The list goes on. But this game does not usually make me feel better. In fact, it just makes me sad to think about all of the awful things that people experience (and it makes me a little wary of gorillas). 

Finally I realized that sometimes you just have to feel it. Some days, there is no escape. You just have to sit in the funk. Now I'm not one to advocate wallowing, because that generally just makes you and everyone around you miserable. But all of this illness and trauma and decision making is part of the human experience -- we cannot just skip the hard parts or check out until something good comes along. Bad things happen to everyone. The degree of "badness" might differ, but no one is exempt. When I accepted that my sudden illness was all part of being human, "Why Me?” became “Why Not Me?” Life is painful and unfair, yes, but it is also wonderful, magical, and miraculous, all at the same time. As I am dealing with cancer, my beautiful daughter is taking her first steps. Life is just like that.

So I decided that checking out with drugs, alcohol, denial, or twelve hours of TV a day (pick your poison) was not an option for me. I decided that I needed to feel it all. I must admit that this can be exhausting. Sometimes, I would rather just sleep it all away in a haze of barbiturates. But I don't. Spring is here, my daughter is saying her first words, and my son is asking me Big Questions about the galaxy. I don't want to miss a thing.

Chromosomes, Monosomies and Miracles

Among cancer’s many gifts to me (such as bruises, baldness, and black humour), this disease has also provided me with an entirely new vocabulary. I now know impressively big words like neutrophils, posaconazole, and the infamous thrombocytopenia. (Try that one out at dinner parties.) But by far the craziest thing I’ve learned in the last few months is how bone marrow transplantation actually works.

When I was first diagnosed with leukemia, I was obviously devastated. But after some research, I thought that I would endure several horrible rounds of chemo, lose my hair, and then put this all behind me. Unfortunately, that was not to be the case. A few weeks after my diagnosis, I found out that I have a monosomy. That means I’m missing a chromosome, and a fairly important one at that. So while the vast majority of human beings have 46 chromosomes, all of them quite critical to existence, I only have 45. I was not born this way, as a Chromosome 7 deficiency in utero causes all sorts of birth defects. Instead, at some point, somehow, for unknown reasons, my DNA started to self-destruct. You do not need to be a genetic expert to figure out that, without intervention, this will end badly.

With a little research, I quickly discovered that the prognosis for leukemia patients with a Chromosome 7 deletion is very poor. I fall into the “unfavourable cytogenetics” category. Several rounds of chemo might put me into remission, but not for long. The doctors told me that a bone marrow transplant is essentially my only shot. But it is also no guarantee. I found this annoyingly vague. What did that mean? How much more time would I get with this risky procedure? Five years? 10? 20? I’m only 32. I greedily want 50 more years.

I know, of course, that no one is guaranteed that kind of time. No one is even guaranteed a tomorrow, cancer or not. I also have a lot more people working to ensure that I’ll live another day than the average person does, so I take some comfort in that. (Seriously. Do the rest of you have multiple hematologists, an army of nurses, a naturopath, dietician, social worker, chiropractor and a counsellor? I sure hope not.)

Then I started researching bone marrow transplants and completely freaked out. Somehow I had never thought of it as such a dangerous and completely mind-boggling process. (Well, let’s be honest. Before this diagnosis, I had never thought of bone marrow transplants at all.)

For the donor, much to my relief, the process is fairly low risk. The stem cells or bone marrow, depending on the procedure, replenish themselves in a few weeks. Many donors go back to work the very next day, and they get to say they spent their day off saving someone's life. In my books, that is pretty incredible. (See www.onematch.com.)

For the recipient, however, the process is quite different. The chemo that they give you before a transplant is extremely toxic – far more vicious than what they usually use for cancer treatment. It completely kills off your entire immune system. Essentially, it kills you. In fact, the chemo kills off your bone marrow so thoroughly that it cannot come back. And then, in some cases, they also give you some radiation to finish things off. (I guess there’s dead and then there’s more dead.) After all of this, in order to survive, the recipient needs someone else’s bone marrow or stem cells.

Now you know why I freaked out. And it gets better.

In an organ transplant, you receive a new organ and your immune system can reject that organ. But in a bone marrow transplant, you receive someone else’s entire immune system. That means you get their blood type, their immunity, and even their allergies. The way I see it, the process essentially splices two humans together. (Disclaimer: This is my totally non-scientific interpretation of a very complex process.)

After the transplant, I will no longer be missing Chromosome 7, but it won’t be mine. I’ll still have part of my DNA, but I’ll also have someone else’s. A more nefarious person might consider committing a serious crime right before the transplant. Afterwards, the perpetrator would have different DNA and a new blood type – very difficult to track down. (Good thing I’m not nefarious.)

Once the transplant is done, instead of the risk of your body rejecting a foreign organ, this new immune system can reject and attack you. So with a few hours of research, I learned that the process designed to save my life could also kill me. Great. Didn’t someone once say that cancer was a snap? No? I must be thinking of a different four-letter word.

I also discovered that the majority of people who need bone marrow transplants never find a suitable donor, especially patients who are not Caucasian. Yet after all my bad luck with the cytogenetics, I finally got some good news last week: my doctors found multiple donor matches in the bone marrow registry. Hallelujah, baby! Scattered throughout the world, there are people who are as genetically close to me as my own brother. Not only that, but somewhere along the line, these people decided to sign up to be donors. And now at least one of them has been confirmed as willing, young, healthy, available, and a perfect match. This anonymous person, without knowing me at all, with no promise of rewards, accolades, or any sort of payment, is going to save my life.

Miraculous? I think so.

The Upside of Sick

I could bore you with a litany of all the things that are terrible about cancer, but that would do no good. Going over everything I hate about this situation makes me miserable, and sharing it will just make you depressed, and the last thing we need is more sad people. So, instead, I have decided to list some of the good things about being seriously ill. Yes, there are some. It is not all nausea and fatigue and bruises and dry mouth. Here are just a few of the perks:

1. You now have an excuse out of anything at any time. Literally anything. When you get severe dizzy spells and spontaneous nose bleeds, no one is going to nag you about your underwear on the floor. Don’t feel like putting your bowl in the dishwasher? Cancer. Don’t want to change a poopy diaper? Cancer. Once you feel better, people will forget that you were sick and these perks will go away, so I say use them while you can.

2. You can completely reinvent yourself. You’ve already lost your hair, so you have a new look anyway. Always wanted to dress like a rocker chick? Do it. Hate your job but were always too afraid to quit? Walk away. Always wanted a tattoo? Get it. (But wait until you have blood cells again.) Change everything and anything you want. After cancer, no one is going to question your desire to overhaul whatever time you have left. Cancer is the best “get out of jail/school/job” card you could ever play.

3. You will get so thin that you can wear anything. You know how they say you can’t lose weight unless you work for it? Not true! Chemo will kick those last five, ten, or 15 pounds off your frame like no boot camp ever could. So now you can rock those skinny jeans and all it took was a boatload of toxic chemicals pumped into your veins. The downside of this, of course, is that your super skinny self will be far too weak to strut. A catheter in your chest also puts a serious damper on bikini season. So just stay seated and keep your shirt on, and no one will be the wiser.

4. You will save a small fortune on haircuts, highlights, hairspray, shampoo and all things hair-related. Get a good wig, and you have perfect hair every day in about five seconds. I now laugh in the face of humidity.

5. You will have a very sudden, unexpected respite from all duties and deadlines. If you are a type-A personality like me, this may bring a strange sort of relief. Before cancer, I was drowning in PhD deadlines and driven to always be better and work harder. In less than a week that was all taken away. While the sense of loss was difficult, the shift into a mindful, restful existence where no one expects anything of me has been a surprising gift. A nurse, however, pointed out to me that most people are more stressed, not less, when they get a cancer diagnosis. I’m more relaxed now than I’ve been in years. Interesting.

6. No one has to hold back your hair when you puke. Ok, admittedly this is not a great perk, but it did come to mind the other night during a particularly bad bout of nausea. Sometimes it’s the little things.

7. Finally, you will (hopefully) be overwhelmed by how many people care about you. I will never be able to thank all of the people who have donated money, meals, and time to help us, not to mention all of the supportive emails, cards and gifts that I have received. If I ever thought I was alone, I never will again. There are people praying for me on nearly every continent. It is astonishing and incredibly humbling. We shouldn’t need serious illness to bring us together, but maybe sometimes we do.

There you have it. Seven good things about being sick. I may be crawling up the stairs, I may have no white blood cells, but I don’t have to do dishes and I look great in leggings.

That’s something, right?

Coming Home

After five weeks in the hospital, coming home was a delightful but strange experience. While being in the hospital was hard in more ways than I could have imagined, coming home also presented challenges that I did not expect.

In the hospital, I had endless hours to read, write, journal, do yoga, watch mindless television -- all of those things that a full-time parent/full-time student never has time to do. On the flip side, I had horrible hospital food, a perpetual IV tether, limited mobility, and the nonstop invasion of doctors, nurses, cleaning staff, physiotherapists and social workers into my room.

But at home, the day starts with shrieking. Not angry shrieking, just the results of my 11-month-old delightfully experimenting with her vocal range, and my preschooler egging her on. Peaceful meditation is out. As soon as I come downstairs, they are all over me. I can barely get breakfast without one kid hanging onto my ankles and the other one shoving a book into my face, demanding that I read. I get the impression that they might have missed me, just a little bit.

And then there is the inevitable chaos of home. Dishes, laundry, toys, and seemingly endless clutter… things that are all much easier to ignore while in the hospital. Now nothing is how I left it and all I want to do was tidy and redecorate, but having no blood cells puts a damper on those sorts of tasks.

So for the first week, I accepted the mess. I embraced the noise. I did nothing but sit with the kids and let them climb on me. My daughter followed me everywhere saying: “Mama! Mama!” and refused to let me put her down. My son wanted to show me all of his toys again, as though I must have forgotten all about the cool Duplo and spy Playmobil while I was gone.

Then I started realizing that I hadn’t written in my journal in days. Yoga had gone by the wayside, writing this blog was not happening. Surely there must be a way to balance the monotonous silence of the hospital with the insanity of two very loud (and messy) young children at home.

And then I found the solution. A locked door, a loud fan, earplugs and (if needed) some Gravol. I guarantee that will put you into a kid-free, blissful haze like nothing else. Now this should go without saying, but if your kids are really young and you don’t have someone else watching them, this may not be the best course of action for you. Or maybe it is. I shall not judge.

I felt guilty about this at first, after being away from my children for so long, but there is no healing without rest. If I don’t learn that now, I never will. I love my family more than anything, but being climbed on all day long when your body is just barely recovering is not the way to get better. (Crawling up the stairs with low blood pressure and two kids pulling at your feet is also just begging for a catastrophic accident.) So at some point every day, I lock the door and sleep and read. Maybe soon I’ll start to write more. For now this will have to do.