All Done

So where are we? 

I’m occupying that strange land that lies at the end of treatment and  before we take the pretty pictures that tell us how effective that treatment was. Scans won’t happen for another two months but rather than feeling overwhelmed by anxiety, I  feel pretty calm. Not to sound like a seasoned veteran but I’ve done this before. Rituxan worked before. I have no reason to believe it won’t work again. And if it doesn’t, well, we’ll address that when we get there. So until then…some comments and observations about this round of treatment.

Treatment Not Chemo

First go round, I did Rituxan and Bendamustine. The latter (Bendamustine) is a nasty toxic little chemical substance, thus it is definitely chemotherapy. Rituxan, on the other hand, is a monoclonal antibody — so a type of immuno, not chemo, therapy. This go round? No Bendamustine thankfully. So that’s why I refer to it as treatment and not chemo. In case you were wondering.

Easy Does It

Because it's a targeted treatment, and not the broad, systemic toxin that Bendamustine is, the Rituxan treatment is about as easy as it goes. I felt fine, with the except for a little headache, fogginess on the Saturday after each treatment. I continued my running each week, and this week, I'm back up to my 10-15 mile a week schedule. That's great, but it creates a strange disconnect when you're sitting in the waiting room, about to get treatment feeling healthy, and are surrounded by people much sicker than you. I felt simultaneously lucky and guilty, and occasionally apprehensive, after all since the eighth floor is all hematologic oncology, all the patients there were likely lymphoma, leukemia or myeloma patients. Hard not to see the sicker patients and wonder if that could be you some day.

 

Super Sensitive

Ever drink too much and couldn’t move your head (or any part of your body) without the whole room spinning? Couldn’t shut your eyes? Couldn’t move your eyes? Yeah, that’s me on too much Benadryl, all at once.

So on week three, Lana, my angel of a nurse (more on her later), slowly, slowly pushed the Benadryl in my IV. It was the slowest she’s ever pushed 50 mls of Benadryl, she said. What’s the point? When it comes to medicine, I’m super sensitive. Makes for a cheap date.

The slow push worked well — some vertigo but manageable. And by week four, we were feeling confident enough that I wouldn’t react to the Rituxan that we went back to Benadryl pills. Much better.

Little Things Matter

When you’re spending seven (the shortest day) to 11 hours (the longest day) in the same infusion chair with the same staff, little things matter. Having Stacy there for the second half of each day was key. Often, we were just surfing on our own devices much of the time, but the physical company helps. So do the little things that Dana-Farber does, like having volunteers push around a food cart for refreshments. And smiling. Nurses, techs, volunteers all greet you with a smile. When you’re going through treatment — even when it’s as relatively easy as mine was — a smile helps. 

Big Things Matter, Too

One of the biggest things about doing a course of infusion is having the same infusion nurse. No matter that all the notes from previous rounds are well documented, and that they’re all capable and nice. As a patient, you feel like your nurse knows you. And I felt like Lana knew us — me and Stacy. It was Lana, my nurse, who was there well past her shift end, when my first infusion lasted until 8:30 pm. I was glad to see her familiar (and yes, smiling) face on weeks 2 and 3. And when she wasn’t my nurse on week 4, she still checked in to see how we were doing. I remember when the Yawkey building opened back in in 2011, I was on a few committees and as people talked about the clinic switchover form one building to the new building, one of the big concerns was whether patients would have their same infusion nurse. I didn’t see the big deal back then. I get it now. 

--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

Cancer: My Distant Relative

When I was first diagnosed, cancer was so intimately involved in my life it essentially moved into my house, shared a room, consumed our resources. It was a member of the immediate family, always present and always on my mind.

Over the two plus years since diagnosis, though, I've been able to create a little distance. Even when I was undergoing chemo, it felt like cancer had moved away a bit -- to perhaps the position of an extended family member who I might think of often, but only visit occasionally.

Then, after treatment ended, cancer became more a family relative, who I still think of often -- if not quite as often -- and only visit infrequently. Which brings me to where I am today: If cancer were part of my family, it would be a distant relative -- one I know exists but don't plan on visiting any time soon.

That's good progress

But eventually, I'd love for cancer to be that distant relative I didn't even know I had.

--MIchael

Is It Strange to Look Forward to a Visit with your Oncologist?

This is my third attempt to post a new entry. I'm tempted to say it's writer's block, but it's not. It's just that the thoughts I've been having are worthy of about a line or two and not a full post, so I'll do what all good bloggers do when they can't connect the dots from idea to idea -- I'll use bullets. 

• I've been looking forward to my upcoming visit to see Dr. L. But then I often find  myself looking forward to my quarterly visits. That seems strange. It's not the Crystal Light flavored contrast agent; or the pre-scan fasting; or the bloodwork. Part of it is that it's an opportunity to be another 3-months clear. As much as I try not to live scan to scan, there's always that mental calendar that's hard to turn off. Each post-chemo visit from now until whenever may carry the anxiety of the lymphoma returning, but it also brings with it the opportunity to have as close as we get to a clean bill of health.

• The other part of the anticipation is because of the way I'm always treated at Dana-Farber when I replace my employee ID with my patient bracelet. There's a feeling of welcome and belonging that permeates the place and for cancer patients who can feel vulnerable and full of a sense of otherness, not to mention just plain sick, this big bear hug of a feeling helps.

• I'm also looking forward to our trip to NY to the Lymphoma Research Foundation's National Education Forum. But I have to admit, it's just odd to be looking forward to attending a forum for cancer patients. As we say, the cancer patient/survivor club is the nicest club that no one ever wants to join. It will be good to hear the latest on lymphoma research and treatment, maybe connect with a few other follicularians (that's my new word for follicular lymphoma survivors) and to get away for a weekend. (If you're going to NY for this event, let me know!) 

• The longer it is between posts, the harder it is to post. 

• I was surprised the other day to feel a passing wave of nausea. But if you believe what you read on the Internet, that's pretty normal even 6 months post-chemo. As a friend of mine said, I shouldn't be surprised given all the chemicals that were pumped through me. It's happened on occasion since treatment finished, but it's manageable and well short of the need for medication to manage it.

• Our less processed life continues. It continues to surprise me with how much artificial stuff is in supposedly good-for-you foods.

• As I introduced myself the other night to my new editing class, I was thinking: I wonder if any of my students Googled me, and if so, what they found. As an adjunct professor, there's not a lot of official info on me on the Emerson web site, but Google is an open book, so to speak. Two or three years ago, it would have been an innocuous search that would have revealed a French chef, and a corporate bio or two or me. Now, it's a different story. Cancer is inexorably part of my identity. It's not what I wanted, but I'm good with it.

--Michael

p.s. - It's taken more than a week between writing and posting. It's just going to be a busy fall, with work, teaching, sports, and other commitments. So while I aim to post more regularly, it may be a quiet blogging fall -- both for writing and reading. So to all my fellow bloggers out there, hope you're doing well.  

A Visit to the Oncologist, in Two Parts

Part 1: Before the Visit

I'm a little amazed at how weird it feels to be a patient again -- even if it's only for blood work and an office visit. It's been just over four months since my last chemo and 3+ months since my last scan, but it seems of another time.

Part of the time distortion is that April and May are crazy busy times around here. Sports, schoolwork and a whole lot of work work has meant a lot of activity, and when you compress all of that in a short time frame, it tends to distort time in a way, stretching it and winding it up at the same time.

But as I sit in here in the clinic, I'm struck, odd as this sounds, by the number of sick patients. I realize it's a cancer center, but  after spending the first two years of diagnosis working to redefine (in my mind) cancer patients as someone who felt and looked like me -- that is asymptomatic and surprisingly healthy --  I've forgotten that many cancer patients here on Y8 look much sicker - tired, masked, bald or weak. It's a stark reminder,

Fortunately, I feel fine. My vitals were all fine. My weight is healthily down; my pulse is back to its low running rate. I'm just waiting to see Dr. L to hear about my blood work and such. I expect to hear nothing surprising, but there is -- and will always be -- that nagging anxiety that there was something in the lab work, some growing lump. As I've said before, there's very little I can do to control that.

Part 2: After the Visit
Everything's fine. Let's start there. But I left feeling a bit disappointed nonetheless. Dr. L was running late so I ended up seeing my NP, who is fine and nice enough, but isn't Dr. L. So that was the beginning of the let down, but what exactly does one say in those situations: "Oh, hi. I thought I was going to see Dr. L..." with the implication being, "and that's who I would have preferred to see."

No, that seems awkward and mildly insulting. So we just see the NP. But the disappointing point is that, although my blood work looked fine, there's nothing particularly informative about it. As she explains it, there not really going to see any signs of my lymphoma in my blood work, unless it's relatively advanced. And if it is relatively advanced, well then, I'd probably know about it because I'd have, repeat after me, fellow veterans of oncology visits: night sweats, fatigue, etc.

So if the blood work isn't informative, and the office visit consists of asking me how I'm doing, feeling my lymph nodes and spleen,  listening to my lungs (I'm guessing that's what we're doing with the stethoscope), and asking me how I'm doing... well, it just seems like we could all but do that by email, couldn't we?

At the root of my disappointment, I think is this: when we're post-chemo, or in remission, or whatever we're going to call this waiting-for-lymphoma-to-return phase, what we want is hard confirmation that we're okay. Isn't that why, at it's most basic level, we go to a doctor, any doctor? If we're feeling sick we want the doctor to make us better. But if we're feeling okay yet are concerned even ever-so-slightly that something might be lurking (as, I should add, all cancer survivors tend to be), then we want the doctor to say, "you're fine."

And even though I feel fine and have no reason to think otherwise, that's what I didn't get on Tuesday.

--Michael

So, How are You?

Once upon a time, "how are you?" wasn't such a loaded question. Nor wasv"how are things going?" Or, "hope you're well?" Or "how's the family," for that matter.

When you think of it, "how are you?" is an impossibly broad question if you think about it literally. Of course, most people don't think of it literally, but then, I'm not most people. I have a need for accuracy that I've been told by at least one person in my house, can occasionally stretch my stories to a somewhat unbearable length. Matthew, fortunately, has inherited this gift. While his brother is the talker of the two, if Matthew actually gets going on recounting, say how Messi scored in a recent Barcelona game, the story might take longer than the game, even with stoppage time. But you will know everything happened before -- and after-- that goal with preciseness, if not conciseness.

Which brings me back to, How are you?

The meaning of the question lies in the interpretation of the answerer. And for someone who feels the need to be fullly truthful in their answer, that can be tricky, leading to long answers and awkward exchanges. When I was first diagnosed, I always took the question, often asked by caring people with a tilt of the head and a touch on the arm, to mean: "I'm so sorry you have cancer. How are you dealing with it?"

When I was going through treatment, I heard the question differently. It sounded to me like: "Oh, you're going through chemo? But your hair is not falling out. And I saw you running last week. Are you really going through chemo? Because if you are, you seem okay. Are you?"

But now, as I'm a day away from three months post chemo, I'm almost ready for the meaning of "How are you" to return to its rightful place on the shelf of available small talk.

Almost.

There are still times when someone I haven't seen in a while will use the question, asked with a pronounced emphasis: "How are you?" to let me know that they know -- to inquire without inquiring, to ask about my cancer without having to say the "c" word. When you think about, it's a lot less awkward way of asking, than, say, "So, how's the old cancer doing?" as if my lymphoma was a bum knee that's been bothering me.

In the past, I might have tired to answer with an honest description including the results of my latest scans, and the details of symptoms related and unrelated to lymphoma. But after two years of being asked the question by a growing group of people in the know, I've learned to save the boring details for Dr. L, and answer, instead, based on my interpretation of the question:

"I'm doing well. Thanks for asking."

--michael