Five Thoughts from Someone Else's Hospital Bed

I'm going to try something new. Rather than write, edit, revise offline and then post online, I'm just going to write, directly into the post and see what happens.

Let's call this one: Random observations from a hospital bed.... not mine.

Well, the observations are mine but the bed isn't. I'm sitting in Boston Children's Hospital while my son recovers from elbow reconstruction - an old broken elbow that never healed properly. While he sleeps, I think.

•  I was walking back to the hospital after grabbing a quick dinner and I passed by a nurse who was headed home, and I thought, what an emotionally difficult job it must be to be a nurse. To come in each day and be such a positive force for these sick kids, and then to go home and to try not to worry about all those kids, and then to come back the next day and do it again, and again, and again. And then I imagined what it must be like for pediatric oncology nurses who take care of some of the sickest kids, day in, day out. Wow.
  
• I think I'm finally over my scan results, and all it took was one Facebook post. (In that post, a woman was celebrating that her scans showed her tumors had waxed and waned to nothing.) Well, that helped, but so did a good therapy session, a talk with Stacy and a little time. The thing is: I was kind of expecting perfect scans which showed no growth at all. And when that didn't happen, it upset my universe -- or at least my solar system. And it took a little while for the planets to realign.
  
  See, I had decided that I'd make it through my 50s without any more treatment. And when the scans showed a little growth, this brought the possibility of treatment back into the picture, and I'm nowhere near 60. But I realize now that trying to make it through my 50s is about as wrong a plan as I could have. At best, it sets me up for disappointment; at worst it turns me into a calendar watcher, wishing and coaxing the years away for what? To hit some random goal? Sure, I hope the next scans show nothing, but if that's not the case, we'll deal with it then. In the meantime, I'm not going to wish for that day to get here any sooner. The future will be here soon enough.
  
• How do you know if a teenager is feeling better? He asks for his phone.
  
• Sometimes life is not about getting things done; it's about letting things happen. I thought this the other day when I was getting irritated at the general lack of productivity in my house. I don't do well sitting around doing nothing -- no surprise to anyone who knows me. And the aggregate amount of sitting around in the Buller household that day was reaching epic proportions; it was driving me crazy. But then this idea popped into my head. Well, actually, Stacy talked me into going for a run, which I did, and then after I did that, then the idea popped into my head. Still, the point is, at work, productivity may matter a lot.  But at home, it's okay sometimes if stuff doesn't get done.
  
• My dual identities of Dana-Farber patient and Dana-Faber employee may converge. We are beginning a podcast where cancer survivors talk about different post-diagnosis issues and I believe I'm going to be the host of it. I've been back and forth with the prospect of being so open about my dual identities but I think it will be good - both for us and for me.

1 Year Post-Chemo: 10 More Things I've Learned From Cancer

That was me one year ago today. My last round of chemo. Feb 1, 2013.  What better time for a return to my list of 10 Things I Learned From Cancer. (The first two lists are here and here.)  This time sprinkled with links to some of the more expanded version of the idea.

1. Numbers are irrelevant. People place an over-sized emphasis on numbers - in everything I suppose, but particularly in cancer. You can look at the number of people diagnosed with your cancer, the cure rate, the progression-free survival rate, the chance of recurrence, the chance of secondary cancer. Stem cell transplant patients gratefully celebrate the day they received their transplant as their new birthday. I write a blog post for the one-year anniversary of the end of treatment. It's all meaningful... and meaningless.

2.  People want to help. They may say stupid things. Ask ignorant questions. Tell tales or relatives who died of cancer, were cured by wacky diets. They just want to relate. The ignorance used to bother me. Now I try embrace it. To me, the more ignorant the question, the more removed they are from cancer. Good for them.

One of my favorite photos of the boys
enjoying an ordinary moment

3.  We try so hard to have the perfect moment, that we forget the most ordinary moment can be its own perfection.  It's easy to mistake quantity for quality. Last year, for example, we went to Disney World, in between my fourth and fifth rounds of chemo. It was tempting to try to cram everything in -- to make sure we mapped out every moment to make sure we saw and did Everything.  But we didn't. We had a loose plan. We saw lots. We missed a bunch. It was a great trip.  

Living in the moment isn't just about trying to squelch anxiety about what the future may bring; it's also about not living in a permanent nostalgia for better days. But the thing about living in the moment is that some moments are harder than others.

4. I'm sometimes amazed at the pettiness of otherwise good people. 

5. Cancer doesn't necessarily make you better, but it can bring out the best in you. It can amplify what's already inside of you.  

6. Everyone needs something to help them get through the diagnosis. Something beyond the family support. Beyond the friends. Beyond the professional help. Call it a hobby, a passion, a pursuit, an interest. It's just something that you can call your own. For me, it's not this blog. It's running. 

Matthew and I after
a Father's Day run

7. Ego can be a terrible thing. It can get in the way of lots of good intentions.

8. Cancer advocacy is hard work. I often get to work with cancer patients who are advocates for cancer awareness, research funding or health care legislation. After being forcefully immersed in the cancer world — through diagnosis, treatment, recovery and who knows what else — choose to surround themselves with the topic through volunteerism. That's not easy.

9. There will always be mental hills and valleys. It doesn't matter how many months or years you're out from a cancer diagnosis, there will be nights when it's inordinately hard to deal with the thought; there will be days when it's but a distant memory. When you're on top of the hill, it's easy to see that landscape. When you're down in the valley, it all looks like mountains.

10. It's great to hear stories of follicular lymphoma patients who are 20+ years out but there's only one cancer that matters. Mine.

-- Michael

Staying Strong

In a few short weeks, it will be a full year since my last round of chemo. It seems like forever. I don't have another scan until September; my blood work looks fine; I remain, despite my tendency to think any ache is lymphoma-linked, symptom free. I am essentially living the same life I was prior to June 30, 2011.

Essentially.

I tried to think the other day of how I felt before I was diagnosed. What a day was like when the thought of cancer was as distant a thought as winning the lottery? I could only fantasize about either -- and the lottery was the better choice. It's been 2 1/2 years and it seems like this is how it's always been -- which doesn't mean I'm always thinking about cancer.  

But when I am thinking about cancer, and in particular, my cancer,  I occasionally think about dying. I think any cancer patient who says they don't is either trying to protect someone or very, very good at optimism. When I do,  it's always the prospect of missing out on things I'm looking forward to that's the saddest. (Ric Elias talks about this in his short Ted Talk, 3 Things I Learned While My Plane Crashed , which is worth a view.) When we're young, we think we're invincible; when we're older, we often think of ourselves as immortal -- that we're always going to be there.  

Even when the prognosis is good, cancer removes any illusion of that immortality. 

It's not that I often think of dying, but the idea of not being here will sometimes invade my thoughts at my weaker moments. It's been said that fighting cancer is as much a mental battle as a physical one. I'm not sure about that. But I do know that when I'm feeling tired, infected with a touch of symptom paranoia, or otherwise run down, it takes effort, real mental effort to keep those negative fantasies at bay. 

It's always tempting to live from appointment to appointment rather than take each day as it comes -- to carpe scan instead of carpe diem. When I find that temptation hard to resist, I resort to the best therapy I know. 

I run. 

I run for the exercise. I run to stay in shape. I run to counterbalance the ice cream I might eat later. I run to infuse energy into my body, to boost my mood, and my productivity. And some days, I crawl out of bed at 4:45 am and take a train into Boston so I can run to affirm my health. 

--Michael