Close your eyes a minute. Well, close them after you read this, that is. I want you to picture that turn in the road that tells you you're almost somewhere you really want to be. For K and I, it's a bend in the road on I-93 in New Hampshire, where Canon mountain comes into view for the first time. Where is it for you? What do you feel when you get to that place?
In a lot of ways, that's how I feel today.
^Not exactly the place I mentioned, but it is in the White Mountains and evokes a similar feeling for me.
So, now that I've indulged in yet another sappy metaphor, raise your hand if you've had a PET scan before!! I've had two now. The initial one that was part of the flurry of appointments after we found the lump in my leg, and now a recent one as of this past Wednesday, and friends, the news was good.
Chemo Cold - don't recommend.
So at the risk of burying the lede a bit here, I'm going to start by talking about the past few weeks post infusion #3.
This one was a little harder on me, I think I mentioned in my last post, but still not too bad. What was tough this time is that we're in peak cold and flu season, and things have gotten a little scarier in that respect. The Sunday before that infusion, K and I and some good friends of ours went to see the new production of "The Life of Pi" at the American Repertory Theater here in Cambridge, MA. K and I loved it, our friends not so much. Reason I mention it is, a few days after that performance, our friends let us know they tested positive for COVID.
Thus our watch begins...
So this is an experience we've all had at this point, right? You're in close contact with someone who winds up COVID positive, and you start playing the "is this a symptom or is my house just dusty" game. Only, this time, the first question was "ok do we go ahead with the infusion?" which we decided to do, on advice from my Doctor. Then it became "if I get COVID now how fucked am I?"
Now as I mentioned before, the answer to that question is "ultimately, not very." As my PA told me, it'd be inconvenient, but at this point I'd get through it. Worst case scenario I get admitted for a few days. Not ideal, but not the potential death sentence this all was a few years ago (side note, one of the many "thank you Jesus" moments I've had lately is that I didn't have this journey beginning at the same time as the initial outbreak). So we took a test every few days until we were out of the window of vulnerability, and considered the bullet dodged.
Then my nose started to run.
K and I both started to get sicker and sicker, still testing negative with the godforsaken nose swab kits. Fortunately we had a weekend coming up so I was able to back off of work for a day and just focus on rest and recovery, but let me tell you - getting a cold while dealing with Chemo is no fun. I was like a faucet, it wasn't cute. K was on a similar trajectory, but thought she was better enough to go see a friend on Sunday, which resulted in her just tanking afterwards. All of you folks who have sent us grubhub gift cards and money for groceries and all that? This was the week where you saved out butts. We took full advantage of it, and of the amazing Asian food scene near where we live. Nothing gets the ol sinuses flowing like a slightly too spicy bowl of Ramen or Pho.
The coughing was so bad for K we got a little worried about pneumonia. I was starting to feel better, so that brings us to Wednesday, where we wound up both going to Brigham and Womens for "his and hers radiation." She got a chest x-ray, I got my PET scan.
She didn't have pneumonia. Ultimately the consensus is there's a really brutal upper respiratory something or other going around and we fell victim. What are you gonna do. We're both better now.
OK Let's talk about the PET scan now
So now that I have thoroughly buried the lede and made you suffer through me basically bitching about having a cold... let's revisit that PET scan I mentioned at the outset here.
So for context, here's what you need to remember. I was prescribed 4 full cycles of the R-CHOP Chemo regimen, followed by two additional cycles of just the R. As a reminder, each letter represents a different drug. The R stands for Rituxan, which is immunotherapy, and now that we know my body can handle it, has basically no side effects. The CHO drugs are the ones that are "traditional" chemo, cause hair loss, nausea, etc, and the P is Prednisone, the steroid that helps me deal with the side effects. So, this PET scan was ordered to check in on how my body is handling the Chemo, and ascertain how much progress has been made. With this info, my doctors can decide if we finish out the course as is, or if we add more treatments into the plan.
If you haven't had a PET scan before, let's demystify it a bit. It's not the same thing as a CAT scan, yes they move you through a giant tube and it's somewhat claustrophobic, but it's not the loud, slightly terrifying experience of the CAT scan. The machine is pretty quiet. The annoying part is that they inject you with a radioactive substance, and you have to sit there and wait for an hour for it to filter into your entire bloodstream before they do the scan. I laughed a little at the injection, they access my port, do the injection, and then de-access it. Made me feel like I was getting "plugged in and unplugged" in rapid fire which I found some humor in.
Anyway then they run you through the machine, which takes about 20 minutes. It's a little weird, you're on this moving table and they move you back and forth a bunch of times, kind of surreal.
After K and I both got our doses of radiation, we headed back home to await the results. So here's the good stuff.
PET scans are scored on what's called the Deauville Scale , and my scan was scored at a 2, which is considered a negative score. I was able to do a little reading on this, 2 in my kind of lymphoma is also considered a "CMR" or "Complete Metabolic Response." It doesn't indicate a cure, but it is considered a really good report, basically means there's no tumor or anything like that at this point.
Now I haven't discussed this with my doc yet, but based on what I read I'm taking this as really good news. It means the Chemo is working, and likely I won't have to do any additional rounds. That means that the infusion I'm scheduled to get on Thursday will be my last full infusion. Once the effects of it have worn off, I'll have the two additional Rituxan infusions but they don't cause things like hair loss, nausea, etc, so I'll essentially be on the path back to normal at that point.
Starting to look forward
So now, suddenly, I feel like I've come around a corner, and I can see normal waiting for me up ahead. I'm starting to feel like this whole thing has gone incredibly fast. I feel like that day in early December was yesterday, and really it hasn't been THAT much time anyway, has it? But up until now, this has seemed like something to get through, something I couldn't see beyond, and now, suddenly, I can. It's odd, and it brings up interesting feelings. One of the ways I've coped is by joining certain subreddits. There are specific subreddits for lymphoma and a general one for cancer. The cancer one is heavy, there's a lot of posts about people who are terminal and trying to find their path to dealing with that... it would be a lot I think, for someone who isn't experiencing this in some way, who doesn't have a foot in this world. For me it's been grounding to be there, to occasionally comment with my support, to see how other people deal with things both smaller and much, much larger than my journey. But now, I'm starting to wrestle with something that feels like guilt. I've been so public with this, I don't regret it at all and I continue to get feedback thanking me for it, but so many people have such harder journeys than mine has been so far, but there is a little voice that I have to quiet sometimes that tells me "oh shut up, people have it so much worse." So many people never turn around that corner and see normal waiting for them. So many people spend so much more time through the looking glass than I have. In some ways I feel like I've sampled what it's like to be a cancer patient.
It's not negative, this emotion I'm feeling. I know that my journey is as valid as anyone else's, and this is part of that journey. It's extremely difficult not to compare my story to others I've encountered, so I made the decision not to try and avoid it. It's ok that I feel this way, because what it is, I think, is an overflow of compassion for people who are walking their own journeys through this dark valley. Connection, maybe, too. Once I'm past it, will I still carry that connection with me? I think I will. I think I'll always understand what it feels like to get that phone call, the one telling you that you have a fight ahead of you. I'll always know that feeling of going in for your first infusion, the unknown of what's ahead. That's something I'll never, ever forget. I feel lucky to be stepping into the final stretch, and sad that so many others have so much further to go, or never will. It's complicated, but that's life, isn't it?
For me, there's a lot coming. K and I will restart our journey towards hopefully having a child. We are going to take a SOLID vacation. I'm finally going to turn this into a travel blog. I'm going to keep trying to move K and my life forward, both professionally and personally.
I also have a fitness journey ahead, I am basically at square one at this point, I haven't been able to get on the peloton much, that cold kept me pretty down and out. I can feel that I've lost muscle mass too, and I get winded faster than I did before, but it's ok. I get to start rebuilding. I get to be intentional. This blog is going to make a pivot soon, once I'm through all this and beyond that home stretch, the journey continues. Life continues. I am going to live while I'm alive, and I'm going to write about it. On writing - where do I go next?
Speaking of writing about it - a lot of you have been really kind about my writing in this blog. Some of you have even suggested I try to do this in some kind of professional capacity. Thing is, I have no idea where to begin. I'm grateful for the readership I have, but I haven't the faintest idea of how to expand, how to take this further, and goodness, how to get paid for it. So, I turn to you, my dear readers. If any of you have any advice or feedback on this, please contact me.
I've dabbled in writing a little fiction, even posted a teaser a while back of a short story I'm working on. I would like to take it further but it's shelved for the moment, I need to do some serious edits. It's coming though, one of these days.
On my last post
For now, I'll finish up by addressing my previous post. It was definitely a low point, that one. Losing the hair and the beard were painful, on a variety of levels. That said, I'm ok now. It was a moment, not a new normal. Many of you reached out with support after that one, genuinely and from the bottom of my heart, thank you.
I've said this a couple times, and I will keep saying it, this whole journey has brought so much light into my life. Yes, I am walking through the dark valley, the one where you can see death with more clarity than you're comfortable with, I think that's how it is for anyone who has a brush with cancer or the like, but you all have done your best to shine a light into those shadows and keep my path illuminated. Yes, this treatment took my hair. But this journey has given more than it has taken away, by orders of magnitude.
So for now, if you've been concerned at all when reading my blog, please know that I spend most of my time living in gratitude and optimism. I'm doing well, I'm almost there, and you have helped. Thank you, I love you all.
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