Blog Reset - We'll Get There

Spoiler Alert... I'm fine.

There, got that out of the way. In the event that there were enough readers of this little blog to divide into two different categories, then it would be as easy as not to divide the readers into two types - those who read to generally check in to see how I'm doing,  and everyone else.

It's for the first type that I say, I'm fine. Because some of you, I know, will get the alert that I've published a post and will think, uh-oh what's wrong. Maybe you won't say it that way, but you'll think it.

One year plus. That's a long time without a post and I'm going to avoid spending time talking about how I haven't posted for a long time and what that means, because really, it doesn't mean anything. But a quick recap, for those who have been following along and lost track, and for those who haven't been following.

I'm now about 8 years out from initial diagnosis of follicular lymphoma, a type of non-Hodgkin Lymphoma (or nHL);  I'm almost exactly 6 years out from finishing my first treatment. That was six rounds of Bendamustine (a traditional chemothearpy agent) and Rituxan (a monoclonal antibody). I tolerated the chemo well; kept my hair, stayed at work except for one day a month; went to Disney. And most importantly, the treatment worked. I'm also about a year plus out of a clinical trial of Rituxan + Imprime. That also seemed to work.

But "working" is all relative. Follicular lymphoma is a chronic disease, and cancer as a chronic disease means you keep weeding the garden. You keep whacking away the weeds, getting rid of the cancer and hopefully doing a good enough job so that it doesn't grow back at all; or if the weeds do back, they don't grow back too quickly; or if they grow back, they aren't resistant to your method of weeding; or if they are resistant, you can find another way to weed whack.

Weeding is annoying. I mean, I love the finished product of a neatly manicured garden with evenly spread mulch. It's the getting there that is annoying, at least.

 But to quote my friend, Allan Osborne, life is good. I'm feeling fine, doing my regular checkups, getting my monthly massage, and running.

Meanwhile, we're getting ready to send our senior off to college in about 6 months time. And, if I'm going to be honest here, I'd say that milestone event is part of my return to blogging  motivation. He just walked in while I'm sitting here writing this and, lifting his head momentarily from his phone, asked if I was doing work

"No, I'm blogging."

"For work?"

"No. For me."

"I didn't know you had a personal blog."

"Yes, you did."

"No. I didn't

"We've talked about it. I've been doing this on and off for about 7 years.."

" I just assumed that was for work."

"Nope. It's my personal cancer blog."

"Oh. So sort of like work."

Sigh.

That wasn't the impetus for this post. That was merely the interruption. But when I, god willing, am in my 80s, and my boys are all grown up and have finally left our basement and have moved into their own basement. I want them to remember who I was in my 50s and before -- not from dusty memories and faded photographs (yeah, yeah... digital photography doesn't fade, but give the writer a little space here) -- but from where my mind and soul was. And it's a writer's words not his eyes that are the window to his soul.

Time for a tangent.

I started writing when I was an angst-ridden teenager. Through college and beyond, I continued to write -- pretty poorly, I might add, except for the occasional accident of stringing a couple of clever lines together.  But sitting on English Beach in Vancouver, BC., in 1986 I realized that writing --  being surrounded by words, poems, stories, books, creative expression - that's what I should do. That's what I needed to do. Three years later, I had my Masters in English and American Literature, having finally passed my foreign language competency exam (Mon Dieu!) and was a staff writer for a business magazine. I've never looked back --  metaphorically speaking.

The point being, writing is my happy place. That, and running. And reading good books. And doing crossword puzzles. And hanging out with friends and family with a nice beer, preferably a good craft brew. And traveling. And playing soccer. Okay, I have an abundance of happy places.  But writing is not just a happy place; it's how I process meaning; how I understand life; how I best express myself;  how I think out loud.

So do I pivot this blog away from cancer? Probably not. 

But maybe.

Maybe I don't need a road map (boys, that's what people used before Waze) to figure out where this blog is going. Maybe it'll just get there on its own. Wherever there is.

--michael

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.

FDA Approves CAR T Cell Therapy for Adult Lymphoma

I don't usually use this forum for "breaking news" but for those who follow FDA approvals and such, there was some exciting news out of the FDA last night.

They approved CAR T-Cell therapy for adults for the first time. Our Dana-Farber blog has more info on it, along with a good little video explaining what it is (I embedded it below).

Personally, I'm VERY far away from needing anything as powerful as this. As we write, "The patients Jacobson and her team are currently treating with CAR T-cell therapy at DF/BWCC have highly refractory and fast-growing blood cancers, and have suffered a year or more of disappointing results with relatively toxic therapies."

That's not me. But it's exciting news and there are follicular lymphoma patients who are part of the clinical trial. (There are many clinical trials underway studying CAR T-cell therapy), And it's comforting to know that this is a potential therapy down the line, should I ever need it.

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