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.


Sunday, December 27, 2015

Taking Time to Take Care of Mental Health, Too

I've had a lot of ideas bouncing around my head for a post but the problem is, I can't seem to perfect the post in my head so it rattles in and rattles out and the page sits empty. The challenge of being a writer who blogs -- as opposed to someone whose blogging and writing career started simultaneously -- is, as I've told my therapist (more on that later), that I can obsess over the writing instead of just writing. 

Most of the ideas that have bubbled under my idea volcano have been about mental health.  I started seeing a new therapist about a month or so ago. Well, new might be stretching it as it implies that I was seeing a therapist before. I was, but I wasn't. I sort of saw Dr. F occasionally when I was first diagnosed, but only in conjunction with another appointment and that was, at best, once every couple months. To complicate things, we both work for Dana-Farber, so I would see her increasingly in co-worker settings, making the patient/doctor roles a little awkward. Although I haven't seen her in a patient-doctor role for probably two years, ironically, it was working with her in my communications role that made me realize that I really needed to see someone. It's not that I'm not fine. I am.  I just think I can be finer.

There are times, even surrounded by cancer as I am at work, when I don't think about having cancer; there are times when I can't even recall how long it was since I did chemo. (Three years, I looked it up). But that distance doesn't mean that cancer isn't still part of me. It may be below the surface; but it's there and it's real. Sometimes the enemy you see is easier to deal with than the enemy you can't see. That's part of the reason that it can be challenging to move from treatment to "after treatment." To those looking in, that seems preposterous. You're done. You're finished. You should be celebrating.  So just at the time that you're probably most in need of mental health help, you may be most likely to tell yourself that you don't need it. That you should be moving on and closing that chapter in your life. So, if you're like me, you do nothing and that lack of action can make you feel powerless while cancer lurks.
A lot of patients talk about being angry at cancer. But I wasn't just angry at cancer. I was getting angry at myself for being angry at cancer. I have no right to be angry, I thought. I have the "good" cancer, after all. (Repeat after me: There is no good cancer.) I was feeling fine. I wasn't in treatment any more. There were no lingering effects that so many patients suffer from - no neuropathy, no lymphedema. I should just suck it up, stop complaining and move on.  

Move on.

Moving on doesn't just happen. You don't shake off your cancer diagnosis like a winter cold. The diagnosis stays with you long after the chemo has left your body. That can wear you down. You may look fine and even feel fine, but inside it's peeling away your emotional skin and leaving you exposed.

We at Dana-Farber write often about the mental health of cancer patients -- and we are fortunate to have a very strong psychosocial oncology group. But I think many patients overlook, under-think, and even undervalue the importance of taking care of their mental health. Some times we are so focused as patients on treating the cancer that we forget that we should be treating the patient -- and that's not just the body but the mind as well. That's why I started seeing my new therapist, three years post chemo. 

Sometimes I feel a little silly sitting in my therapist's office. Part of it is because unlike my appointments with Dr. F, this feels like real therapy, like something that's not just tacked on to the end of another appointment, but therapy with a purpose. And part of it, too, was  because I felt better about my mental health almost as soon as I made my first appointment. I felt like I was finally doing something and that gave me the slightest hint of control. And if we know anything about cancer, it's a disease that is completely out of control.

What Dr. D's sessions have done so far is to raise my awareness. At first it seems counter-intuitive. It's gotten me thinking more about cancer when every instinct tells me that if I want to feel better, I should stop thinking about it. But thinking about cancer is not the same as worrying about cancer. 

And thinking about -- and gaining tools and understanding about  how I think about it -- in the controlled setting of Dr. D. or any qualified therapist should be a routine part of ongoing cancer care. 

Sunday, July 5, 2015

10 Things I've Learned From Cancer: Part 3

It was four years as of last Tuesday (June 30) since I sat on the phone in my car in the parking lot of the doctor's office, breaking the news of my diagnosis of follicular non-Hodgkin Lymphoma. About two years later I wrote this post about what I've learned. That proved fairly popular so I also posted this addendum a few months later. Without looking back at what I wrote then, and with the benefit of a little time and distance, here's a new take on what I've learned in the ensuing four years.

1. Time helps. It would have been inconceivable to me three years ago to think I would not remember the day of my diagnosis. But that's what happened this year; June 30th came and June 30th went and it was only in the writing of another entry that I realized that the milestone day had passed. So, particularly for those of us with so-called indolent, slow-growing chronic cancers, time does indeed help. Our flexible little minds adapt to the intrusion into our identity that cancer creates. 

2. Cancer may redefine you, but it doesn't define you. There's no single right reaction to having cancer. Some people acknowledge it openly. Some become advocates for their fellow patients. Some all but ignore it. It doesn't matter how much or little of your daily life cancer becomes, it will always be a part of who you are, but it will never be the sum total of who you are. 

3. In numbers, as in all things, moderation is good.  I love numbers, except when it comes to cancer. And the cancer world is populated with numbers. It's hard not to focus on the statistics that come crashing in, wave after wave. Some numbers can inform. Too many can overwhelm. As in all things, except ice cream, moderation is key. 

4. People should be generous with their empathy and stingy with their opinions. Unsolicited opinions about similar experiences of great-grandfathers, second cousins, friends of brother-in-laws? Don't  need 'em. Latest online fad about paleo diets or juicing or ph-balanced diet or whatever? Don't need those either.  Please... for the next person in your life who is diagnosed with cancer and you don't know what to say; if you should, call, or text, or email or post on their Facebook wall... send them one of these cards from Emily McDowell.  

5. Which brings me to: Humor is important.  I wish more people would joke about cancer. Really, I do. 

6. Of all the vices of the Internet -- phishing and malware, propaganda and porn, online bullying and cyberstalking, you name it -- I  think bad health information is among the worst. There is crazy, crazy stuff on the Internet that can penetrate your rational brain and hit you in your irrational core -- particularly at 2 am.

7. Working at a cancer center is a mixed blessing. In many ways, I'm a lot more knowledgeable about cancer and the workings of a cancer center than I would be if I hadn't spent my last seven years directing content at Dana-Farber. But I'm also a lot closer to a lot more stories of patients who don't survive. 

8. Too many people get cancer. It was President Nixon who declared a war on cancer back in 1971. That's 44 years ago! I know we've made a ton of progress and cancer researchers and doctors are miracle workers. I know we're better at diagnosing and it's probably true that there are more environmental carcinogens that are fueling cancer now. All of which drive up the rate of cancer. But still, there are just too many people getting cancer.

9. You have to find your own path to sanity.  Talking is good. Therapy is good. Creativity is good. But my path is a two-lane road of writing and running. Both activities have been part of me for just about forever; they've become increasingly important since my cancer. As long as I stay in either lane, I'll keep driving toward peace of mind. 

10. Life keeps teaching you if you want to learn. I cheated and looked back at the first two posts of this variety and my list now is different than my list back then. I still agree with what I wrote, but would add these on. So I guess I'm still learning.