It's Still Working: 7 Observations After a Clean CT Scan

Back in December 2012, after three rounds of chemo, I had CT scans to gauge the efficacy of the treatment. Were the prescribed drugs having the desired effect? The answer was yes.  And now, nearly two years since that first good scan, I'm happy to say that my latest scans are clean and stable.

• Today's scans were uneventful -- which is how you want to describe your  medical appointments and plane trips. Three  scans today (pelvis and abdomen, chest, neck, if you're scoring at home) and there was nothing unusual to report.
• A clean scan is great news, but it doesn't feel like a celebratory kind of thing; in fact, it doesn't feel like a thing at all. It just feels like the way it should be.  
• The quarterly appointment is a bit of an odd thing, the appointment. By the time, I'm meeting with Dr. L, all the poking and prodding is over. I've had my bloodwork and scans, she's reviewed them with radiologists and consulted my labs. So beyond talking with Dr. L about ibrutinib vs. idelalisib -- two new lymphoma drugs -- most of our appointment was spent discussing Twitter and the Disney show Dog With a Blog (our kids like it.) 
• I always feel like I'm incognito on appointment day. In the place and buildings that are so reflexively known to me, where I roam freely through the back hallways and shortcuts, where I meet with doctors and scientists as a fellow employee, the moment I swap my employee ID for my patient bracelet, I feel a little out of place.
• A cancer waiting room is no place for a healthy person. 
• I didn't realize until driving home the other night how much cancer stole my identity. I've written here many times how the challenge is always to not let cancer define me; it is now an inexorable part of me, but it isn't the sum of who I am. Still, the very idea of having to go to a medical oncologist regularly, it deprives me of the notion I had of myself as the kind of person who doesn't get sick.
• Now, nearly two years clean, so to speak, I'm beginning to get the faintest glimpse, like a wispy memory of a dream that you can't quite remember, of an identity not dominated by cancer. Now that's something to celebrate.

--Michael

See you on the soccer field (or blog)

If you're looking for me the next two months I'll be at a soccer field. Hopefully with coffee.  And an iPad.  I'll be blogging about that at TheSoccerChronicles.blogspot.com.

Relentless

I started writing this post in early July but I've gotten so out of posting that the act of taking the next step from write it to post it has taken forever. I'm not sure what's keeping me from stepping over the threshold but here I go. But first a few vacation photos from a week up on Lake Winnipesauke in New Hampshire.

The view of the lake from the screened in porch

The view from the dock (with the boys lounging on the rocks)

Good beer. Good book. Good vacation.  

And now on with the regularly scheduled post...
The ever-present dilemma I have with this blog is one I suspect most cancer patient/bloggers have: In the ongoing battle to keep cancer on the back shelf, out of reach, and out of mind, to blog about cancer feels a bit like losing. It feels like a daily admission that I have it. That no matter how good I feel, no matter how happy the dream of day-to-day life seems, I'm going to wake up soon. 

But... to not blog feels like I'm squandering an opportunity to connect and to share, and an equally important chance to process and to heal.

So after a two-month or so absence, some thoughts:

June 30th came. June 30th went. I forgot something. It was my third canciversrary -- three years since initial diagnosis. And although I had this vague suspicion as the day approached that it had some significance, I didn't notice it until I started writing this post. 

I take that as progress.

My recent quarterly visit was as uneventful as they come. It's now more than 18 months since my clean scan and with each day, the vision of my chemo regimen grows fainter in my rear-view mirror. Yet, cancer remains all but an obsession with me. Working at a cancer center probably doesn't help in that regard.

For years, the notion of getting cancer seemed about as far afield as winning the lottery -- perhaps even more distant. It just couldn't happen. But now that it did, I feel like nothing - a second cancer? is out of the question. Each passing discomfort, from indigestion to eczema seems like a sign of a lurking tumor -- just waiting for the diagnosis. Not just my good old follicular lymphoma ramping up, but the precursor to other more ominous cancers. 

It's not logical. But once you uncork the bottle of potential illnesses, once your mind learns that the routine doctor's visit, routine blood test, routine biopsy can lead to a not-so-routine diagnosis -- it's hard to unlearn it, and to remember that there can be things wrong with your body that have nothing to do with cancer.

As anyone with a chronic disease knows, keeping your imagination in check can be a relentless battle.

One of my favorite bloggers, Glennon Melton at Momastery wrote this post after Robin Williams' death.

Her take on how people with mental illness process events such as WIlliams' death hit me smack in the face. Yes, I thought as I read it, this is how cancer survivors feel when someone famous or not famous, for that matter dies from cancer. We get that it's not our cancer. It's not our particular case. But we're reminded of our mortality.

* * * * *
At times I'll come across an old email from Carolyn, printed out and stored away in a folder with spreadsheets and other notes. Carolyn edited the Dana-Farber blog before I did and beyond that bond of transition, we worked together on other projects. I'd like to  say we shared a similar sense of humor but she was much funnier than I am. Her email trail reminds me of that, and as my eyes scan the words, my ears hear her bemused tone. 

Carolyn died in April. She was 45.

Her cancer was different than mine. Much different. And, as I do whenever I hear of sad cancer news, I try to create that diagnostic distance. It's not my cancer, I say over and over again. I'm not sure what I'll do when I hear the news of someone who has died from follicular lymphoma.

Cancer science is an ongoing process of understanding and discovery. It's an exciting time with new treatments and potential approaches in the news every day. But to read about advances in this cancer and that one, is exponentially more frustrating than it is exciting when you see people your age dying from the disease, and you wonder whether discoveries will come about in time for you. 

They didn't for Carolyn. 

Her blog, Writing about Eating, which she wrote under the name LimeyG, lives on for now. It was because of her that I ate chocolate with bacon (good) and a fried grasshopper (crunchy).  More importantly, she inspired me and still does to blog better and more often. I miss her voice. I miss her.

Please take a read, particularly this post. I'll end by quoting from her blog.

In lieu of flowers, Carolyn has asked that you go have an excellent glass of champagne; tell your family how much you love them; buy yourself a book you've been meaning to read; do one nice, small thing for a stranger.

--Michael

Shouting Cancer in a Crowded Room

A couple weeks back I had my quarterly oncology visit. Everything checked out just fine, thank you, see you again in three months.

The only thing remarkable about it, in fact, was that it's now two weeks later and I haven't felt the need to post anything. It's a funny time in the post-chemo journey. While the odd symptom or upcoming scan may trigger a little anxiety, I'm finding fewer reasons to write. 

This blog served as a safe haven for my thoughts for the better part of two years, but as the task of posting feels more task than therapy, it's time to relegate the blog to the back burner for a while. 

Writing remains an important part of me and I hope to continue to do so -- sometimes here and sometimes in different venues and on more diverse topics than cancer.

One such outlet is Dad's Roundtable which just published my recent post, "Shouting Cancer in a Crowded Room"  It's a brand new post, but just pushed out on a different -- and I would guess wider -- distribution platform. 

I'd say check back here for future posts, but I'm not sure when that will be. But when I do post to this (or any) blog, I'll let folks know via Twitter (I'm @MichaelDFCI) or you can subscribe to this blog via email.  Thanks for reading, for commenting, and most of all, for your support.

--Michael

A New Blog Relationship

Rummaging through my inbox, Twitter feed or some other source of news and information, I ran into this great (if R-rated) list on Dads RoundTable.

A couple clicks here, page views there and I liked what I read. So I requested to be a contributor to the site. A week or so later and my first post is up. Take a read and please share it.

Long-time visitors to this blog will recognize that post from its origins here more than a year ago. I've got a few other posts in the works - some having nothing to do with cancer, which I take as a good sign. Although cancer is and will always remain part of me, as it fades to the background, I'm finding fewer topics that are ripe for this blog. So for now, the plan is to post here when I have cancer-related thoughts in my head, and there when I have more general thoughts.

We'll see how it goes.

--Michael

Running through a New England Winter

Yesterday was beautiful. That rare February New England day, when two-month high piles of snow start to melt as the thermostat tops 50. A great day to shed the long pants, gloves and hat, and go out for a long run.

I wasn't alone.

I saw many runners enjoying the weather. Some, perhaps lacing up their shoes for the first time in a while; others basking in the reminder that spring is around the corner. But forecasts say we'll be back in single-digit lows within a week. And I'll still be outside running.

Why?

I hate treadmills. Yes, I can run faster on them because there's no wind resistance. Yes, I can watch the Winter Olympics on the dashboard screen. Sometimes, they're a necessity. I was listening to Dana-Farber's Dr. Rosenthal talk about integrative therapies, and as he talked about the benefits of meditation and what meditation was, I realized that for me, running is meditation. And it's hard to meditate when you're surrounded by other people, watching television and there's a loud, pounding accompanying your steps.

But a dislike of treadmills may keep you pounding pavement when it hits 30 or maybe 20 degrees; but something else has to be at work when the wind chills are approaching zero.

For me, I'd be lying to say that there isn't at least a little bit of "real runner-itis" at work. I've been running since discovering at sleepaway camp in Maine that I was pretty good at it. (Note: when I say pretty good, I need to qualify that. Except for one second-place finish in one track event in ninth or tenth grade, I've never won any race, qualified for any marathon or done anything remarkable in 40+ years of running.  But when I'm running through Boston in the bitter cold, I do feel a bit of ego-induced satisfaction -- of proving to myself that I'm a real runner.

In the past that's gotten me out and running in all sorts of weather. But absent the need to train for an April marathon four years ago, in times of extreme cold, I've turned to the treadmill. This year's been different.

I've said before in this space that since my diagnosis and then chemo, running for me helps me prove to myself that I'm alright -- that I'm healthy. This snowy, cold New England winter, though, running for me has become more than  just an act of assertion, it's an act of defiance.

Whatever the universe brings - lymphoma, snow, single-digit temps -- if I can run, I will.

--Michael

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

Between Anxiety and Awareness

For the six months that I had chemo, I didn't have a single cold. I don't recall a sniffle, a scratchy throat, a stuffed up nose. Nothing. True, I lost my voice for a day after every round, but as everyone else in the house went through boxes of tissues that winter, the joke was that I was the healthiest person in the house.

Except for that cancer thing.

This winter I've had a couple minor colds -- which have quickly resolved themselves. And as the last one fully exited stage left, and as I had that great, post-cold day when you suddenly realize, 'oh, this is how it feels to be healthy," I started thinking about symptoms.

People process symptoms wildly differently - from paranoia and hyperbole to indifference. 

But a cancer diagnosis muddies the water here (doesn't it always). In the BC (before cancer) days, I remember thinking that there are so few days when we are 100 percent healthy. Few days when there is absolutely nothing physically wrong with us -- no scratchy throat, or runny nose, or headache, or insomnia, or fatigue, or indigestion, or sore muscle, or achy joint, or dried out skin, or scraped knee, or blister on a toe or whatever. These minor aches and pains came and went, but they barely registered as anything but an annoyance.

But in the AD (after diagnosis) life, even the most trifling of troubles can send you scurrying through the maze of self-diagnosis, with a cancer-related complication at every turn. Paranoia? Maybe. Anxiety? Sure, a little of that. 

There are so many stories of the grave consequences of undiagnosed symptoms. And in the middle of the night when your mind is vulnerable and your thoughts unchecked, it's easy to turn an upset stomach into a cancer recurrence.   

Symptom awareness comes with the territory, I suppose, and there's only a thin line separating it from anxiety. The trick is staying on the right side of the line.
  

--Michael

A Note about This Blog: With this post, I'm starting (or attempting) to start a more regular schedule of weekly posts. When I started the blog back on 7/1/11, the idea was that I would post when I felt the need. That was pretty frequently two years ago; it's less so these days. So with a regular schedule, I hope to get back to a weekly Friday night/Saturday am post. 

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