Wednesday, February 10, 2016

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.

Monday, January 18, 2016

Scans and Resolutions

I wrote this post, as it'll become obvious in a paragraph or two, a couple weeks back, but having just posted this one, I held it so I could reflect a bit on it.

In the interim, I had my annual scans which showed some slight lymph node growth. Key word: slight.What does that mean? We don't know. It could be the normal waxing and waning of lymph nodes; the beginning of follicular's return; the fighting off of a cold or other infection; or a combination of all of the above. From a practical standpoint, it means a visit back to Dr. L in three months and scans in six (instead of a year), and at that point, we'll determine if intervention is necessary.

It'll be just over five years since I was diagnosed when those scans occur and what intervention means has changed a lot in that time. New therapies, including the much heralded immunotherapy known as checkpoint inhibitors, are now potentially an option for follicular lymphoma, as are Rituxan, Rituxan and Lenalidomide, and others. The science continues to advance and if treatment is required, we'll deal with the options then. But scans are just a picture in time, and hopefully the picture this time just caught my lymph nodes waxing a bit. 

And now on to resolutions...

* * * * *

It's New Year's morning and the house is quiet. I'm sitting in my family room, coffee at the ready, music in the background. Outside, the day is gray and bleary, a disposition that seems as much New Year's hangover as it does winter. But the gloomy weather can't cloud my outlook. I love these kind of mornings. It's my favorite time of day and not just for its soothing peacefulness, but because it's a time of new beginnings, blank slates when the day is stretched out before you, full of possibilities and opportunities. Refreshed (and properly  caffeinated), when the house is still like this, it feels like the whole world is equally so -- and waiting for me.

Today, that feeling is amplified as it's the first day of 2016, a chronological new beginning. Our New Year's celebration last night was intentionally subdued; some video games with the boys, movies with the family and Chinese food that was delivered twice - we declined the second delivery at 9:30. I've been thinking about resolutions, a subject I've written about on this blog before, here and again, here.  My main concern with resolutions is that if they're absolute ones, the minute they're broken, there is little incentive to continue. (Or as John Oliver says, they're the perfect middle ground between lying to yourself and lying to others).  And saving resolutions for January 1 creates the prospect of a pre-New Year's anti-resolution binge. 

But all that said, it's hard to deny the allure of using New Year's Day as a springboard for self-improvement. And so rather than making specific resolutions, I'm going to focus on a word and in 2016, that word is Feed. In the days, weeks and months ahead, I want to:

Feed My Mind
In a nutshell, this comes down to read more, write more. It's creating more mornings like this and more evenings as well. It's cutting down on the junk food of mental stimulation, which for me, often tends to be meaningless sports on television. I'm not suggesting I'm going to give up watching the Patriots or Chelsea, or playing Madden football on the X-box. But to watch Southern Alabama play West Georgia may not be the most nourishing of activities for me. 

Feed My Body
The six weeks or so from Thanksgiving to now is full of sugar -- from apple pie to birthday cake to Christmas cookies. And while the myth of sugar and its relation to cancer is just that -- a myth - there's a lot of science about good nutrition and its positive effects on cancer prevention, and on good health. I'm fortunately addicted to running - and I plan to nurture that addiction for many more years. It'd be good to complement that with more attention to what I'm putting in my body.

Feed My Soul
How do you feed your soul? It starts, for me, by feeding your mind. For me, a well-nourished mind creates an environment more conducive to happiness, and, well, peacefulness. And in that state, I'm more able to connect, more ready to deal with the uncertainties, more prepared to quell anxieties, more willing to accept imperfections in others and myself, and more ready to be in the moment.  

Feed My Family 
It's hard to believe but I have less than four years of having Matthew in my daily life. Less than seven for Noah. That's a short stretch of time. I want to be sure that I give them the best of me. As much as my resolutions above are for me, I know that if I really want to be the best dad and husband, it will happen much more readily if my mind, body and soul have been well-fed.

Here's to a filling 2016.