Report from the other side of the mirror -Reflecting on my first infusion.

My bald head, staring into the void.

It's been a few weeks since I've updated this blog, I wanted to wait until today because tomorrow is the day of my second infusion, and I wanted to be able to give a full report on how I've been handling the Chemo. The short version is - I've handled it really well (so far).

Between that first infusion and now, much has happened. We've met a few new characters in this tale, had a quiet holiday (twice), experimented with medical cannabis (not for me, it turns out), and even made a drastic hairstyle change. I want to catch you all up on how it's been going, and then I want to reflect a bit on a concept I'm starting to think of as "medical privilege."

The days after Prednisone

There was definitely a moment or two as I was coming off prednisone when I felt a little nausea, if you read my previous blog entry you may have seen my edit, after I triumphantly declared myself symptom free, not moments after hitting the "publish" button, I wound up feeling it. I took a Zofran, which definitely took care of the worst of the symptoms, but that really was the worst it ever got. In the interest of full disclosure, Zofran absolutely causes constipation. If you ever have to take it, do yourself a favor and start the colace and senna before you have that problem. I'll spare you the gory details, just trust me on this. That said, if you're managing THAT side effect, the Zofran is glorious. It absolutely cancels out the nausea with relative immediacy.

The next big milestone was my first of 3 mid-week check ups. In these appointments, they take a little blood from the port, check my levels, make sure I'm not neutropenic, and just verbally check in with me and K to make sure I'm tolerating everything well. This is where we meet a couple new characters - we have a PA who I'll call S for the purposes of this blog (I hope this single letter naming convention I've started doesn't get confusing, I'm already too invested in this nickname economy to sell my shares now), and a nutritionist named D. S conducted both of the check in appointments, K and I are big fans of his. To understand why, you have to understand our one frustration that we've been feeling with our medical providers: it's been a little tough to get an honest risk assessment when it comes to my immune system and its abilities to fight off any invasive microbes. Should I be masking? Should I be a shut in? Do I need to tell people to take COVID tests before visiting (yes, please take a COVID test if you come to visit). What Dr. E will often do when asked those questions is a thing I've found most doctors will do, it isn't prevarication, it's just a simple statement of stats, data, and trends. I'm in XX age bracket, I'm relatively healthy, so it's really up to me, in terms of "how comfortable I feel" with certain risks. Look, I get it. I'm not complaining, this is Doctor speak, their job is to arm me with as much knowledge as I can, and help me avert a nosedive if it happens, it's up to me and K and whoever else is part of my home care team to make the necessary choices. S though, he's got some real world experience, because as it turns out, S himself is also fighting lymphoma.

How the hell about that?

He is a few years older than K and I, and is happy to share his experience as it pertains to mine, which K and I have found very, very helpful. The big question is risk, right? So when I asked him about it, his response was "look, I've got two young kids at home who I have to see, help out with, you know, parent. They come with germs. There's no way to mitigate risk entirely for me, but here's the thing - if you get a cold, or you get COVID, it's not a death sentence, it's just inconvenient, and we'll get you fixed up."

THANK YOU.

Putting it into context like that was so helpful for my brain, and for K's. It's hard to pull the facts and figures from the page of my digital chart into the reality of my day to day, but being able to compare notes with S has been a godsend. He's essentially a peer, walking largely the same journey as I am (though it's a different sub-type), and K and I have really enjoyed talking with him during the two check ins over the past few weeks. He's also going to be present tomorrow for my next infusion, which is great because he has a good sense of humor, and we've found it pretty easy to chat with him, which just humanizes the whole experience.

The next new character we'll meet in our journey here is D. D is the nutritionist that Dana Farber has hooked us up with. Nutrition counseling falls under the category of "things I desperately need, but can't find room in the budget for," but now that it's nested under my oncology diagnosis, my insurance is covering it. Silver linings, amirite? D is great, she's working with K and I not only to help me understand how to eat healthily in order to help the Chemo do its job, she's also making me feel a lot more empowered to actually lose weight and recompose my body while I'm getting chemo treatment. One of the many frustrations about this diagnosis for me was that I had finally gotten my head around to a new, serious fitness journey. I'm carrying more weight now than I ever have in my life. My liver is practically Foie Gras at this point (more on that when we meet Dr. A in a bit), and I am generally not very happy with how my clothes fit. That all predates the lymphoma. But after consulting with D, I feel excited to start diving into changing my eating habits. We've been meeting with her weekly as well.

The next character - Dr. A

Regular readers of this blog will know that my primary hematologist is Dr. E. He works out of the satellite Dana Farber office at the hospital I've been going to, and at his recommendation, we've looped in the head of hematology at Dana Farber's main campus, Dr. A. Now Dr. A is a busy guy, and it took until 12/22/22 to get a face to face appointment with him (though the two doctors have been in touch and are in agreement about my diagnosis and treatment plan).

When we finally were able to be introduced, I immediately felt underdressed. Dr. A is a tall, healthily thin Parisian man, who showed up to the appointment in an immaculately tailored charcoal suit, with a lavender shirt and a deep purple tie. I was wearing sweatpants and a beanie. I felt like "your cousin from Boston" wandered into a "jacket required" area of a country club.

That was all in my head though. Dr. A, for his part, couldn't have been lovelier. We mostly just went over all the information I've gone over before, but in his words. We had the opportunity to ask some deeper questions about it all, which was nice, he clued us into a few studies that guided Drs. A and E as they decided on a treatment course for me, and he explained again that the long-term prognosis for me is "cure," not remission. Never sucks to hear that, so they can just keep on telling me that whenever they want.

Now, I know Dr. A has a good sense of humor. How do I know this? I shall tell you, intrepid reader.

A while ago, K thought it would be cute to start a "meUndies" subscription where they send matching "his and hers" pairs of underwear in the mail once a month. On the day of this appointment, I had on such a pair, and Dr. A needed to do an exam that involved exposing said undies. Dear reader, I need you to understand that one of the selling points of MeUndies is their whimsical prints and patterns. This is the print I was wearing on this day (NSFW if two be-undied bums are going to cause you trouble at work, it's a link to meUndies's website).

When the sweatpants came off, Dr. A started cackling. I honestly had no idea I had even put them on that morning. Didn't think about it in my pre-coffee haze.

After we got over the hilarity of my sartorial faux-pas, Dr. A took me on a recap of all of my diagnostics. He also informed me that I have a "fatty liver." Of course, I have a twisted sense of humor and couldn't help myself from spitting out "so you're saying my liver is foie gras at this point?" which made my new Parisian friend laugh heartily.

FYI, a fatty liver is a pretty common thing. Only thing to do about it is lose weight, which is the next piece of intention I'm setting for myself. It can cause problems later in life, up to and including liver cancer. If I can prevent having to deal with the C word again in ANY way, you bet your ass I'm going to. To whit - I'm getting my foie gras butt back on the peloton. Feel free to follow me if you like, I'm GareBear87 there.

The Nadir

The second appointment with S was during what is referred to as the "nadir." The nadir is the point at which my white blood cells and neutrophil levels are at their lowest. This is expected, as it's the point of the treatment to kill off infected white blood cells and let my body generate new ones. It's a little scary because that's the point at which I am "most vulnerable." S again was pretty pragmatic about it. The big question was about the holidays, and the takeaway was that as long as people are testing before coming to visit, we'd be in good shape. Within 3 days of that appointment, I'd be back to normal levels anyway, so by Christmas Eve itself I am basically back to normal.

Pivoting to the Holidays

Amidst all of this medical drama, one could be forgiven for forgetting that it's Christmas. Fortunately, both my partner and my parents were unwilling to let me forget. Let's take a tangent away from the medical shall we? Let's talk about Christmas.

For me, not being a super religious person, Christmas isn't really about church and quiet prayer, it's about family, food, friendship, and fellowship. I've had those things in abundance over the past few weeks, and I'm feeling incredibly recharged and grateful. It started with a "mock Christmas" at my parents place in northern MA, where we basically did our entire Christmas ritual the week before the holiday itself, so that they can go down to Virginia and visit my Sister and her family for the actual holiday. Our Christmas ritual this year was a Fondue on Christmas Eve, then our normal Christmas morning tradition of sweet breads (pumpkin, lemon poppyseed, cranberry), Mimosas, and Coffee while we open presents. That evening we made our Christmas classic, Beef Wellington (1 of 2, stay tuned).

The next Christmas involved us playing host to K's mom, and originally the plan was for her brother to visit as well. Unfortunately he had a close call with COVID and couldn't make it, so it wound up being just the three of us. That gave us the opportunity to mix things up a bit. We had bought a bunch of nice cheese and other charcuterie delights from the Salem Cheese Shop (a cherished favorite), with the intention of sharing it with K's mom and brother on Christmas Day. Given that we had more than 3 people needed, we invited a good friend over on the 23rd and basically made a meal out of it. It was good fun, here's a few pictures of the board I assembled. As for Christmas itself, it was a relatively quiet affair on Christmas eve, but I wanted to treat my mother in law to as similar a Christmas to what my family usually does as possible, so I endeavored to make the same Beef Wellington myself. Friends - I can cook. It turned out perfect. We invited two of our close friends who we've spent holidays with before to come and enjoy it with us, and had a lovely night. That couple, D&P, is expecting a baby in February. It was so lovely to focus on that for a bit, be proxy to their excitement, anxiety, hopeful optimism, as opposed to living in the "cancer world" for a bit.

Take a look at my instagram if you'd like to see some photos, my profile is linked on the main page of this website.

The only problem with Christmas this year was that my hair was falling out, so I had to hide it in a hat. So let's get back to Cancerland and talk about that a bit.

The Dreaded Hair Loss

Someone told me when I started all this to just shave it. I should have listened. I was prepared intellectually for my hair to begin falling out, I just really wish it hadn't happened over the Christmas holiday, because what I wasn't prepared for was how upset it would make me. The first time I noticed it, it wasn't too bad, a couple strands here or there, picking them out of the drain after I showered, but it started to accelerate, and exactly when my MIL was in town which was unfortunate timing.

You ever fall asleep and your hair gets squished into a direction it doesn't normally lay, and then you feel that tenderness at the roots? That's what it felt like, basically all the time. If I ran a comb through it, it would come out in chunks. It didn't hurt when it fell out, in fact I could hardly feel it at all, that was the freaky part. You run your hand through your hair, and it feels normal, except when you pull your hand away it looks like the hairbrush you've had shoved in your bathroom drawer for years and badly need to clean. I wanted my barber, Mike, to cut it off for me as I'd have done a hack job, and didn't want to deal with disposal, but of course it's the holiday and Mike was unavailable. So I put on a Scaly hat my MIL had given me for Christmas, and resolved to ignore it until the morning of the 26th.

I made an appointment for 10 AM that day to have Mike relieve me of this troublesome mess atop my skull.

Y'all need to know something about Mike Coronella, Master Barber. That dude is a freaking mensch. I've been seeing him since 2017, he's become a friend over the years. I've referred friends to him, recently a friend of mine who also has Mike cut his hair told me that Mike was more upset about me losing my hair than I was.

So because Mike is awesome, he kept it light, and made it fun. I could have been a mess. If I can get this video embedded, you'll see that I wasn't, because Mike put a cup of eggnog in my hand and was a goof ball about it all.

He also about knocked my block off when I tried to pay him, he's informed me now that between now and when my hair grows back in full, I can come to him for a free buzz to keep it all neat and even. I have been keeping proper names out of my blog to protect people's privacy for the most part, but if you're someone who likes male style haircuts in the Boston area, please consider giving your business to this guy. You'll look great, and he deserves all the business in Boston. You can book him here, if you're looking for downtown Boston, and he also cuts hair in Newburyport which you can find here.

So here's the good news, I don't look awful with a shaved head. I mentioned in a previous blog I was afraid I'd look like Baron Harkonnen from Dune. Clearly I don't. It's an adjustment, but it's definitely not that bad, and almost looks intentional. I am greatly relieved to have it gone, picking it out of the drain was unpleasant and demoralizing, and now I can go about my day without worrying about it. Though, I still find myself adjusting any hat I wear to try and let my hair lay right under it, forgetting that I don't have any. Weird.

The Meal Train

Here's a thing I never thought I'd need - support. K and I don't make a ton of money but we do fine, but things have gotten harder since the diagnosis. Lots of unplanned expenses, but more so, the challenge has been having less time. Right now, cooking for ourselves has become very difficult as we manage work and all the appointments, so we started a meal train.

I am not going to post the link here. If you want to participate, you're likely friends with me on facebook and you can find it on my page. I want this space to be neutral of any solicitation, but I do need to talk about it.

We've had amazing participation (mostly from one intrepid couple, you know who you are), in the meal train aspect of it, but a large part of our community doesn't live in Boston, and wanted to help, so I added a donation button thinking I'd limit it to $1000 and be happy if we got 10.

So far, we're at $2,570.

I'm more than a little stunned, soliciting donations was never my intention, but I'd be lying if I didn't admit how much a relief that infusion of cash has been. It's allowed us to find a little normalcy in this wacky holiday season, and my gratitude is immeasurable.

Thinking about all this though, has me realizing just how lucky I am, and that's where I want to end today - with a discussion about privilege and community.

Counting my blessings

There are so many ways this could be harder. For starters, I could be a higher stage in my diagnosis. I could live in a rural community where I'd have to drive for hours, or even relocate, in order to receive the kind of care I've been getting.

I also could have less of a community. K and I constantly moan and groan about the cost of living in Boston, but between the access to world class medicine, and the community we've built, we'd be hard pressed to leave. That meal train thing, I mention it because it speaks to the strength of that community.

Here's something I'd like for everyone reading this to take away from this blog post - you make an impact on people even when you think you don't. I've had people reach out to me who I have had friendly interactions with, but wouldn't consider myself close to, wanting to help. I've had colleagues from all the various walks of life I've trod reach out. My net is wide, and strong, and so often I feel like I don't do enough to deserve that, but at the end of the day, I do. And so do you. We all do, to our own extent. Some of us are better about being intentional about it, getting those holiday cards out, sending thank you notes, hosting dinner parties, and some of us are not, but I defy you to put out into the world that you need some connection, and see how many people come running. There is always someone, to quote both Rodgers and Hammerstein, and millions of drunk Liverpool Football Club Fans, truly, "You'll Never Walk Alone."

Something to Consider

Not everyone has it this lucky. Men in America are taught to ignore their pain - how many of them miss an early diagnosis due to the toxic masculinity that we're all taught? Women and People of Color regularly receive a lower standard of care and worse medical outcomes , because of bias within the medical community. Many people live far from the kind of care I have access to, don't have a partner like K to help share the load, haven't built as visible a community as I've been lucky enough to be able to. For every person you know who is fighting Cancer, there are scores of others who are doing it alone. How much harder must that be? That is why I write. I am having a pretty exemplary experience of medical care, and I want anyone who comes across this to know how good it can be so that they can demand it if they're not receiving it. Speak up. Communicate to your providers. Tell them you're in pain if you are. Even at my treatment center, Nurse K from last entry told me that they often walk in to check on people receiving Chemo to find them doubled over in pain, having not communicated with their team that they're experiencing it.

People, we have to talk about this stuff. I think the burden runs both ways. The medical community needs to continue to analyze and unpack bias, but we as patients need to normalize effective communication. On the other hand, for many people there is a language barrier blocking that communication, so increasing access to medical treatment and material in foreign language is important too.

As I said above, what I'm going through is hard, but it could be so much harder. To all of you who have reached out to me, know that you have helped me so much, just by being seen. And to all of you who are reading my words, know that somewhere in your sphere, there is someone who needs help. Watch for them, seek them out, and if you can, help, because you never know when you'll need it yourself.

What's next - through the looking glass again

Tomorrow we go a layer deeper into wonderland with my second infusion. I don't expect it to be too much worse next time, but the effects are cumulative, and it will get harder as time progresses. I won't go three weeks without posting again, the holidays really slowed down my ability to prioritize writing. In the mean time, if you have ideas for healthy meals, want to be a peloton accountability buddy, or want to jump on zoom and do a kettlebell routine with me, reach out! I hope you all had a wonderful holiday, whatever you celebrate, and I wish for all of us a wonderful New Year. 2022 can take a hike. Til' next time friends, I'm 1/6th done beating this thing.