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. 

Wednesday, July 1, 2015

I Used To Be Disgusted...

 'Tis the season. 

Not the holiday season but the season of end-of-year school activities. Beginning of summer fun. It's a chance to enjoy all the simple things that make summer great - longer days, sunshine and swimming pools, vacations and backyard barbecues, and seeing friends who we haven't seen in a long time. But cancer has a way of complicating even the simplest things.

Catching up with friends often brings the inevitable earnest inquiry: "How are you?" or "How's your health?"

The subtext of the simple question is: "I know you have cancer and I'm concerned (or maybe just curious) and you don't look sick but I don't want to presume and I I don't know how exactly to ask about it and since saying something like 'How's the lymphoma doing? Not acting up again is it?' seems inappropriate, I'll just ask: How are you? With emphasis." 

That's a lot of subtext. 

It's taken me a while to figure out how to deal with the question. It used to bother me quite a bit at first. There was one  friend who, if I hadn't seen him in more than a week, would ask that question, with particular emphasis. And to be honest, it would piss me off, like the very asking was an affirmation of the cancer that I was trying to ignore.  

Part of it, too, was that I didn't know how to answer. Sometimes I'd awkwardly say, "I'm good, how are you?" And sometimes I'd just blather on about when my next oncology appointment or next CT scan was: "Yep, I'm good. No scans for another year!"  But usually, I'd just say, "I'm good. I'm fine." And then try to change the subject as quickly as possible. 

I've been able to pivot, at least in my head, my reaction to the question.

Somewhere over the last four years, I cleverly realized that my lymphoma is going to be here whether someone asks about it or not. So I can understand now that, in most cases, asking about my health is nothing more than a concerned inquiry from a well-meaning friend. Being the friend of a cancer patient/survivor is no picnic, and people deal with it in different ways. Some avoid the topic. Some avoid the person. Others want to express concern and don't know how to do it. And others bravely venture forth. 

So next time someone who I haven't seen for a while asks, I'll simply look the person in the eye and say, "I'm doing great, thanks. And thanks very much for asking." 


p.s. -The title of the post comes from a great, old Elvis Costello song, or at least this phrase: I used to be disgusted. But now I try to be amused."  The song itself has nothing to do with the topic, but the phrase stuck in my head one run. Here's the song: