The Emotions that Be
Updated: Jan 4
The Bone Marrow Transplant Coordinator said we’d have days where we feel sad, days where we feel angry, days we feel like giving up, days we feel like throwing ourselves a pity party, and days when we realize that none of the above will do us any good, and we just need to get up, gather our courage and strength and just keep fighting.
The past few weeks we’ve been in the last of those camps — we've just been pushing ahead, living our life as much as we can, and gathering our strength for the battles ahead, trying to feel some sense of normalcy in the process.
(Above: Enjoying an afternoon with Matt's college buddy, Alex, and his wife Erin at our new outpatient apartment.)
But today I’m angry and I feel like throwing myself a pity party.
I feel angry because, as I sit in this emergency room, hearing someone call out “code blue” over the intercom for some other patient down the hall, all I can think about is how this horrific disease has done it yet again — it’s stolen something else from us.
It’s already stolen Matt’s health, our carefree life, our future plans, our ability to have kids, our house, our car, our jobs, Matt’s hair, his energy, 15-20 pounds of healthy weight, and seven weeks of our lives, but now this greedy disease has decided it wants more. More of our freedom to be exact.
(Above: On the boat back from Waiheke Island after our wedding.)
I thought that spending 5 of the last 7 weeks in the hospital would have been enough to buy us a few more weeks of freedom before the transplant, but here we are, back in the emergency room, waiting to be admitted back to the hospital.
After getting released on parole last week, we were told that if all went according to plan, we’d get to spend about 3 weeks out of the hospital before having to serve more time for the transplant.
We were excited at the prospect of freedom!
(Above: Goofing around on our Christmas 2014 camping trip)
Of course half that time we’d spend on house arrest (or “isolation” as the doctors refer to it) meaning Matt wouldn’t be allowed to leave our little apartment in the transplant patient housing, but at least we’d get to sleep in a real bed, make our own meals, brew our own coffee, use our own private bathroom, and — the most emotionally significant victory for me — I’d get to have a glass of wine or a beer with dinner every night!
It was a good life outside the hospital, even if it was wanting for a few things. And if I closed my eyes and tried hard enough, I could almost forget that we were in the middle of this mess. I could almost forget that we’ve spent the last seven weeks battling this horrific disease. I could almost forget that we were three weeks away from a major medical procedure that would come with its own set of risks and complications. I could almost forget that we had a long road ahead of us. I could almost forget that this was our life now.
We were warned by the doctors before our discharge that there was a 50/50 chance that we’d end up back in the hospital at some point over the next few weeks, but there was a very real possibility that we’d get to spend the next three weeks in freedom (or at least the pseudo-freedom of house arrest), and we were determined to be in the fifty percent that didn’t get re-admitted.
But today we found out we were in the other fifty percent.
Matt went to the outpatient clinic, as he’s required to do at least 3 times per week when he’s not in the hospital (although they recently upped his requirement to daily visits), and they ran his blood labs as usual. His counts were low, which is to be expected, and he needed a platelet transfusion, which also wasn’t unexpected. They began the transfusion as usual, but he began to spike a bit of a fever halfway through the transfusion, which can be a sign of infection or his body rejecting the platelets, so they had to stop the transfusion.
As per protocol, this meant he had to be readmitted. They sent us over to the emergency department to begin treatment there while we waited for a bed in the BMT (“Blood, Marrow, Transplant”) unit to open up.
(Above: Matt's feet hanging off the bed in the emergency room.)
We were told we’ll be here until his blood counts go back up again, which is probably close to a week if everything goes smoothly. But if we’ve learned anything in the world of AML, it’s that things don’t always go smoothly. In fact, if history is any indication, things typically tend to go un-smoothly more often than they go smoothly, and the only thing we can count on is that we can’t count on anything.
So here we are, back in the emergency room, waiting to get admitted to the hospital, and more than anything else, I’m feeling anger right now.
(Above: In our room in the emergency department where we've been since Tuesday.)
I’m feeling anger at the cancer for stealing more of the few precious days of freedom we had left before the transplant. I’m angry at Matt’s blood for not accepting the platelet transfusion without raising a fuss. I’m angry at myself for allowing myself to believe — even if just for a minute — that we’d really get through three weeks without any hospital admissions.
But more than anything, I’m angry at the helplessness I feel about this situation.
I’ve never felt so helpless in my life as I do in this battle against this stupid disease. It doesn’t fight fair, and I’m sick of having to play by its rules. We did everything right, so there’s no reason we should have to be punished with another hospital admission when we have so few days of freedom left.
I spent the last five days doing my best to make sure Matt didn’t get sick. I cleaned everything in the house that he could possibly touch. I bought him healthy foods and lots of liquids to keep hydrated. Auntie Rhonda brought him a portable AC to use in the bedroom to help regulate his body temperature in this unseasonably scorching "fall" weather. I stood behind him in the bathroom when he was feeling weak and made sure he didn’t fall. I got up with him throughout the night to check his temperature. I made a chart of his medications and made sure he took them on time every day.
I did everything right, so why did this happen?
(Above: My mom "(Joms") visiting us at our outpatient housing.)
It happened because it’s cancer and cancer’s an asshole. You don’t get a choice in the manner, style, or timing in which it chooses to destroy your plans, your health, or your relative happiness. It’s like a 7-foot-tall toddler with a baseball bat, throwing a tantrum in a pottery store. It will do whatever it wants and it will destroy everything in its path. It will leave a mess of destruction behind it and there’s nothing you can do about it.
The most infuriating thing about it is that, with just about everything — and everyone — else in life, you have a choice of how to respond when you’ve been wronged. If your boyfriend cheats on you, you can break up with him. If your boss doesn’t give you that well-earned promotion you’ve been waiting for, you can find a new job. If a person or company cheats you out of something, you can sue them. (Can you tell my American roots are returning?)
My point is that, for just about every other injustice in life, you have a choice in how you deal with it. You can choose to accept it — you could forgive your cheating boyfriend and take him back — or you can choose to reject it — you can decide that you don’t have to put up with his atrocious behavior and break up with him. You don’t have to just sit back and take it.
But in the battle with cancer, you just have to sit back and take it.
(Above: Matt cooling off in our room at our new outpatient housing.)
You don’t have a choice of not going back to the hospital because you don’t think it’s fair that you should have to give up any more of your freedom. You don’t have a choice of skipping chemo because you don’t think it’s fair what it does to your body. You don’t have a choice of not accepting a blood transfusion because it gives you fevers. You don't have a choice of keeping your hair or your healthy weight or your general happiness. You don’t have a choice of returning to your normal life.
You don’t have a choice in any of it. At least we don't.
You just get to sit back and take it while the cancer has its way with you. While it strips you of your hair, your health, and your pre-cancer happiness. While it takes your job, your house, your car, and your belongings. While it takes your dreams, your plans, and everything else you’ve worked so hard for and blows them up in a cloud of smoke in front of you, leaving nothing behind but tears and broken dreams.
This I could deal with, though. These things we can get back, and if the cancer wants to strip us of everything we own, that’s fine. It can have it all.
But what I’m angry about — what I don’t want to give up — are these last few weeks of precious freedom before we go back into the hospital for the transplant. We have some tough months ahead of us and we need to gather as much strength and bank as many happy memories out of the hospital as possible before then.
(Above: Matt and me enjoying a day of relaxation over Queen's Birthday Weekend in New Zealand.)
I’m not willing to give this up, and I want to fight with all my might against it. If only this cancer could take a corporal form for just one day, I would grab it by its throat and punch it in the face. With a knife. I would scream at the top of my lungs that it’s already taken everything from us and we haven’t put up a fight, but we refuse to let it take this from us -- our last few days of freedom. I would shred it to pieces with my bear hands in unimaginable fury and it would be unrecognizable by the time I was finished with it. And then — because I’m American — I would grab a gun from someone’s glove box and shoot it. Like 17 times. In the head. And then I would sleep really well that night.
But unfortunately cancer has no corporal form and I have no power to fight against it while it steals our freedom from us once again.
(Above: Enjoying a warm summer day in Wellington last year.)
So today I’m feeling like a 9-year-old girl whose parents just told me I couldn’t go to my best friend’s birthday party, despite that I had done all my chores and they had no valid no reason for denying me — the only reason they gave was “because I said so”.
So like an angry 9-year-old girl, I stomped around our apartment today, crying and screaming when I learned we were having our freedom stolen from us yet again. I wanted to grab things off the walls and throw them on the floor. I wanted to grab things off shelves and throw them against the walls. I wanted to punch a hole through the window. I wanted to scream that it couldn’t make us go back.
But it could. And it did. Because it’s cancer.
So today was an emotional defeat, but this is just a battle. It’s not the war. There will be many more emotional defeats along the way, and there will be many emotional victories as well. But the victory that matters most — the victory that I know we will win — is the greatest victory: the war against this awful disease.
And true to our American roots, we’re bringing in the big guns to deal with this cancer once and for all: a 10 out of 10 donor match!
Get ready for the battle ahead, Cancer, because you don’t stand a chance.
PS - Since writing the above post, we spent two nights in the cesspool of germs known as the ER and were finally just transferred up to our "home" on the 3 West wing known at the BMT Unit. The 3 West wing is much more palatable -- and with much less risk of getting any germs/disease/infection -- than ER so we're celebrating a small (but important) victory today.