Hoping for the Best

I have a very simple New Year's Resolution this year. It's, of course, not the first time that I've taken to this blog for resolutions. Over the course of ten years of on and off blogging (mostly off these last few years), I've resolved to feed my mind, body and soul, and to be more accepting and have fun, among other things.

But first a little backstory. I am an optimist by nature -- territory I've also written about over the years. But theses past two years have tried the faith of even  the most eternal optimist. You may have noticed there's a pandemic out there that's killed millions, turned lives upside down, and tested the resilience of individual, family, and community. 

So on the one hand, you have the pandemic, and on the other hand, cancer. Scans in early 2021 showed tumor growth compared to my 2019 scans and as I booked my November appointment, it was with the expectation that we would be talking about treatment options for 2022. 

The familiar expression is: hope for the best, but prepare for the worst. Smart business planning perhaps, but also a guard against disappointment. Don't get your hopes up and you won't be let down. And I was bracing against the challenges that 2022 treatment might present: how to attend my nephew's wedding in March; how to visit Matthew in Copenhagen during his semester abroad -- presuming it still happened. 

But there's a problem with that thinking; when you prepare for the worst, you start expecting the worst -- or at least fearing the worst -- and that anxiety crowds out any space for hope, for optimism. And it's hard to be happy if you are living in a state of perpetual anxiety.

I like what I wrote back in 2013 when I said that "every year is filled with its moments of greatness, of pure happiness and gratitude... Sometimes, they're so tiny, so fleeting that you can miss them if you don't pay attention." 

If you're too busy expecting the worst and preparing for it, you can easily miss them.

A funny thing happened in November. Instead of my scans showing more growth, they actually showed some smaller tumors and others pretty stable. Will I need more treatment in 2022? I don't know. Right now, I have an appointment in a couple months and then more scans in August. So we'll see. But importantly, I feel fine. (I ended 2021 and started 2022 with a run.) And  so I'm simply going to hope for the best. Period.  

And that leads me to my New Year's Resolution, which is simply this: I will allow myself to Be Hopeful; I will allow myself to Be Optimistic; and I will allow myself to Be Happy

It's a resolution I hope a lot of people take. 

Post Treatment Scans: The Results are In

Massage, ahhh. Photo courtesy of Dana-Farber. Note: that is not my foot. 

Scans. A mini-milestone birthday. An oncology massage. It’s been a busy week. 

Let’s start with the scans. As Dr. L said (immediately as she walked into the room), “Scans look good.” After four weeks of a clinical trial involving Rituxan and Imprime back in August and September, it was 10 weeks of waiting until until CT scans would tell us see if the Rituxan did the trick. Short answer it did. The usual trifecta of Neck, Abdomen/Pelvis, and Chest scans all came back good. The highlights:

From the Chest pics: 

No enlarged lymph nodes. 

From the Abdomen/Pelvis pics:

Interval decrease in size of multistation lymphadenopathy

No new lymphadenopathy 

From the Neck pics:

The multiple previously enlarged lymph nodes in the neck have

markedly decreased in size, with no current lymphadenopathy

That's my emphasis, of course. But add that to the very normal blood results and it makes  for a very nice 55th birthday present, thank you very much... except for the not eating for four hours or so. And the drinking the usual cocktail of Omnipaque and Lemonade. Bleh. But I’ll take that any day for results like this. 

What's more, it’s possible that the Rituxan will continue to work beyond what it's already done. We’ll see when we return to the scanning table in six months. But for now, the biggest issue I have is tight calf muscles and even those are doing a lot better. 

Like many things, I blame my calf muscles on cancer. My theory goes that either the disease or the chemo has changed something in my muscles or my tissue that has caused my calf muscles to be tight, even tighter than they usually are. At times, I've been able to run through it. Other times, I've been able to stop and stretch it out and continue on a run. But there have been times when I had to stop my run, midway through and limp my way home. There were even a few weeks where I had to stop running altogether. And if you know how important running is to me, you know that's a bad thing. 

Of course, there's the possibility that I'm just getting older and the wear and tear is getting to my legs. 

Possible. I've been running off an on for probably 45 years. But like anything going wrong in my body these last six plus years, I prefer to blame it on the cancer. There's certainly anecdotal evidence to support the theory from other lymphoma patients and survivors -- but then, dig around the Internet enough and you'll find evidence to support just about any theory. For instance, one myth surfacing in social media groups is that massages are bad for lymphoma patients because in massaging the muscles, you stimulate the lymphatic system and move the cancer cells around the body. Sounds crazy, right? Cause it is.

Fortunately, Dana-Farber has a full integrative services and wellness center which offers, among other things, oncology massage and acupuncture. So part out of desperation, and part out of convenience (I can walk from my office to the center), I went in for an integrative therapy consult and then signed up for three sessions of acupuncture and a couple of massages. Interesting and relaxing as it was, the acupuncture didn't seem to do much (I'm told that acupuncture is most effective in treating treatment-related fatigue and nausea). However, the massages? Great. After the first one, I was able to have a three-run week at my regular speed and distance. Yesterday, after my second one, I tried out the myth of "massage is dangerous to lymphoma patients" on my masseuse. Her reaction "If that were true, your doctor would tell you to stop walking because that stimulates your blood, too." 

My oncologist's reaction was an emphatic roll of the eyes, as well as the suggestion of magnesium supplement. (My masseuse might have rolled her eyes, too. Hard to tell when you're face down on a massage table.) 

So that's where we are. After about a week of Magnesium supplements and my second massage today, my calf muscles feel about as good as new. Or about as good as a 55-year-old can expect. Looking forward to a couple of runs this weekend. It's not only been a busy week, but a pretty good one too.

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.

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.

--michael

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

Cancer and Superstition

I remember watching baseball games on tv as a kid and firmly believing that in order for the Mets to score runs, I needed to sit on the floor. This being the Mets of the late 70s (who were even more abysmal than the Mets of 2013), they needed quality hitters not  superstitious juju to score runs and win games. But that didn't stop me from following the ritual.

A rational mind, I know, would look at superstition and scoff. Show me the scientific proof that a broken mirror produces bad luck, or knocking on wood prevents a jinx from erasing your good fortune. It just doesn't make sense.

Still, here I am with good news about my recent visit with Dr. L and I'm hesitant to write about it. And I know I'm not alone. I know many other survivors who fear that talking about how well they're doing tempts fate too much, almost inviting bad news to follow the good.  

I was reading a story recently about a Parkinson's  patient who confided in his therapist that he was constantly waiting for the other shoe to drop. His therapist told him, "You have Parkinson's. The other shoe dropped a long time ago."

Five years or five months from now, I may have to write a post that talks about how my lymphoma has returned. But that post will happen regardless of what I write today. The more I think of it, the more it seems that avoiding the positive news, or couching the positive in conditionals and wood knocking is giving in to the natural anxiety that comes with a cancer diagnosis. It puts the emphasis on all that can go wrong, instead of what's gone right. 

It's waiting for the other shoe to drop.

So I'll share the good news. After CT scans, bloodwork and an appointment with Dr. L, I remain free and clear. In fact, we are not going to do another scan for a full year. And, on top of that, the Red Sox, my adopted team since the late 80s have clinched the AL East. The Mets, on the other hand, didn't have nearly enough juju this year.

--michael

Just for fun, here's the link to Stevie Wonder's great song, "Superstition"

Processing

Dorothy Parker may have written to have written, but I write to process information.

At least that's one of the reasons. When I started blogging 18 months ago, it was to get the ideas out of my head and onto paper. The ideas, I thought, could do less harm there. I also enjoy the craft of writing - of stringing words and sentences together. Rearranging them so that sentences fit into sentences, into paragraphs, into a seamless, smooth surface. What I discovered along the way of 100 or so posts is that writing is also how I process information. It's how I digest what's been said, and figure out in my brain what it means to me, and how I'll deal with it. Even when what I'm presenting seems straightforward, it's never about reporting information to me; it's always about processing.

Which brings me to Monday night's post. I had the hardest time writing it because it was just information, and it was just information because I didn't know how to process what I heard. It was good news - scans looked great; bloodwork looked great. If we were to do PET/CT which isn't always necessary, we'd likely find No Evidence of Disease. It was good news!  But I was blocked. And the more I was blocked, the less I could process; the less I could process, the more I was blocked.

Dog chase tail. 

Then to confound things, my inability to write - to celebrate through words, to celebrate with this small handful of people who have been my crutch and my support, well that just pissed me off. And then, because I couldn't write about that -- about the fact that I was angry and frustrated that I couldn't use my writing to process it -- well that just made me question whether I should be celebrating. That's just crazy. My inability to write started to affect how I felt.

Dog chase tail.

I wouldn't be the first person to say that as lousy as cancer is, it brings blessings in disguise. A fellow blogger uses that very title in her blog. To me, the blessing has never been about appreciating moments more, I've always been grateful for the life I lead, even if I might be just a bit more aware of the beauty in the mundane these days. To me the two greatest gifts cancer's given me are an ability to do my job better, and a chance to do what I love to do: write.

There are many stories of writers who can trace the seeds of their writing career to their childhood  --to stories written for their elementary school magazine or a teenage writing contest or such. Not me. I had a love and aptitude for numbers as a kid. I was going to be an accountant. Truth. Then somewhere, in college, I think, I started writing. Crappy poems. Amateur short stories. Oddball pieces for fringe magazines and newsletters. But they got me to a point where I was 23 and  sitting by myself on English Beach in Vancouver, B.C., at the end of a day that I don't remember, writing. And  I decided. This is what I should do. 

More than 25 years later, thanks to this blog, I'm writing today more than ever, and like the news I got yesterday, that's a good thing.

--Michael

Good Scans. Good News

Just a short post here to report back that I met with Dr. L to talk about the post-chemo scans and they  looked good.

But for all the good results, this has proven to be an all but impossible post for me to write and I'm not sure why. So rather than labor over this for any more than the 90 minutes that I've been laboring, I'm going to sum up:

• Scans and blood worked liked great.
• Whatever nodes that are visibly larger than normal are under 1 cm and most likely just scar tissue at this point.
• I have the choice of watching and waiting on Rituxan maintenance therapy (1 day every two months for two years). While some studies point toward some remission benefits from the Rituxan maintenance strategy, those studies didn't look at patients who had come off a BR (bendamustine-rituxan) regimen as I did, but rather at those coming off R-CHOP. And even in those studies, there wasn't necessarily an overall survival benefit.
• For me, maintenance therapy may give some sense of empowerment in that you might feel like you're actively attacking the cancer, it also to me is an acknowledgement that you're still sick, which, if you haven't guessed, means I'm leaning toward watch-and-wait.  

That's about all I have for tonight. 

--michael 

Waiting for CT

And now we wait.

I had scans yesterday morning but due to scheduling, I'm not seeing Dr. L until Monday. I've been debating whether to post something between now and then or not. I guess I've decided to post.

The people at the CT reception desk have one of the most difficult jobs. They are greeting people who are likely anxious at best (what will the scans show?), tired (my scans are always in the morning and that means trying to trek into Boston ahead of the commuting crowd), hungry (no food for at least four hours prior),  and forced to drink two bottles of crappy tasting contrast that is only partially masked by a Crystal Light.  And to top it all off, the pressure is on the CT folks to keep things moving  because for many, that's how the day begins - blood draw by a nurse and then CT, followed by either MD appointment, infusion and/or other fun.

And yet at 7:30 yesterday morning, the gentleman who checked me in was smiling, pleasant and efficient. The nurse who prepped me for CT (questions, ID check, dispensing of contrast) was friendly and equally efficient; the assistant who walked me to the nurse was kind and sweet; the nurse who drew my blood? Again, smiling, chatty, and a big fan of Dr. L (not the first nurse I heard to say that). And lastly, the CT tech, friendly, personable, and from Rhode Island.

One of Dana-Farber's core values is compassion.  And to me, it's never demonstrated better than by the ability of everyone I interact with on any given day to greet me with a smile and a kind voice.  I was in and out of CT in 90 minutes and the consistency of the warmth and friendliness made a difference.

-michael