My next journey - beating Lymphoma

So this was supposed to be a travel blog. Maybe one day I'll circle back to the road trip that K and I did in 2020, but at this point, I'm embarking on a different journey, one I never planned to go on: beating Diffuse B-Cell Non-Hodgkin's Lymphoma.

I've been wanting to sit down and write this blog post for a few weeks now but I haven't been able to find the words, or the motivation. It's been hard to find a lot of myself over the past few weeks, but as things settle and the path towards chemotherapy gets clearer, I am finding myself with some bandwidth, so here we go.

How it started - Just a swollen lymph node

A little over a month ago, I was washing up in the shower and noticed a swollen lymph node in my leg. In the chart below, look for "Inguinal" lymph node, that's the one. I didn't think too much of it at the time, lymph nodes swell all the time when your body is fighting off this or that or the other thing, but I resolved to keep an eye on it. A few weeks later it hadn't gone away, so I made an appointment with my doctor. He ordered blood work, an ultrasound, and a biopsy, and off we went.

I still wasn't thinking "cancer." It's some other weird thing. They'll probably have to remove it and I'll go on my way. I'm only in my mid-thirties, cancer is something that comes later, right? Well... no. Obviously not. I knew in my mind something like cancer can strike at any time, but still, I feel like it's a pretty human thing to assume it's not coming for you... life would be pretty scary if you didn't right?

So fast forward to Friday, November 4th. Normally I work from home on Fridays, but my company had a professional development session I was excited about, so I went into the office. The session was great, persuasive communication, I eat that shit up. My mind wasn't on the lump in my leg, it was on trying to continue the success I'd been having in my role, crushing my sales goals, moving into management hopefully, you know, work stuff. Later that afternoon I was having a conversation with a colleague, that I had to interrupt when I saw a call from a number I recognized as being my doctor's office. I popped into a privacy booth (like an old phone booth without the pay phone) to take the call, and my doctor informed me that I do indeed have some kind of Lymphoma, and he'd be referring me to the Dana Farber Oncology ward housed in the same hospital complex he works in.

I don't know quite how to describe the feelings that came over me in that moment. It wasn't panic or fear (those would come later), but more of a matter of fact-ness? a resignation almost... ok - I have cancer. shit. It might have been because I was at work, it might be how I process things, I'm not sure. My primary care physician isn't an oncologist, so I knew I couldn't ask him too many things. The only thing I could think to ask was this: "In my understanding of cancer, and those who survive it, it seems like catching it early is pretty key, so where are we at with this?" He told me that my blood work was completely normal, not indicative of cancer having spread throughout my body. He reminded me that he's not an oncologist, but that it does seem like an early catch. Ok- good news I thought, and then I tried to go back to work. Tried and failed, I should have just gone home, but I stuck it out like a good little soldier til' quitting time and headed home. After I called my wife and my mom that is, to let them both know what was going on.

I couldn't really tell anyone else yet, I didn't know anything. I knew I had lymphoma, cancer, but nothing more, and it was Friday, which meant I wasn't going to learn anything new until the following week.

Here my friends, is where the panic and fear sets in.

Medical Limbo: The worst weekend of my life

If I can give you any advice on how to get cancer, try not to find out you have it on a Friday. There's nothing in the entire world scarier than a mind turned loose with a context-free diagnosis. Suddenly everything was a portent of my impending doom. I could (and still can, by the way) suddenly feel the lymph node at all times. I felt a numbness in my left toes (the toes attached to the leg with the inguinal lymph node) that I was convinced was happening because the node was swelling and pressing on my artery, restricting blood flow. I cycled back and forth between tears and anger. I was finally introduced to the kind of anxiety some people struggle with their entire lives - the kind that feels like a weight pressing on your chest, that prevents you from taking a full inhale, the kind that, frankly, I needed chemical help with. My doctor (bless his habit of checking emails on the weekend) responded to a panicky email I sent him on Saturday with an Ativan subscription. It definitely helped, but I'm a little leery of the drug so I only took it when I was ready to try to sleep.

The other frustration of the weekend interruption to the gathering of forces that is getting ready for cancer treatment was this: The last thing I heard on Friday was that my insurance might not cover treatment at Dana Farber. Now long story short, they did, and of course they do, but it was one of those "we have to wait to hear from the insurance before we can embark on life saving treatment for you" things, which I absolutely despise.

The only thing that got me through it was my wife, K. She is no stranger to anxiety, and knew how to help me. She sat with me, let me cry on her, and although she's just as scared as I am, she didn't make me feel it, we just sat in it together, and that made it better.

Bottom line - being in a weekend long state of "medical limbo" sucks and I just wanted to start making plans to get better.

Getting started: Meeting Dr. E

So Monday finally rolls around, and I can start making appointments. Insurance came through, and my Hematologist (lymphoma is a blood cancer) reached out to schedule an appointment for Tuesday.

K came with, and honestly we couldn't be happier with this Doctor. The first thing that endeared him to us was that I was sitting in the chair in his office, and in order to look at his screen, he'd have had to have his back to me while he gave his consultation. He asked me to move to the table "so we could have a more human conversation." DING DING DING, this guy obviously gets how to talk to scared people. I'm sure he's done it a lot, and with people facing far more dire circumstances than I am. I don't understand how you keep your sanity in a role like that, but good lord am I thankful for his ability to do just that.

He lets us know that the diagnosis is B-Cell Non Hodgkins Lymphoma - though there is still further "typing" to be done and he's sending my samples over to the main Dana Farber campus downtown. The rest of the appointment lives in a kind of hazy state in my mind. My emotions were all over the map, obviously, but also K and I were there to get the facts and make a plan, so it was this surreal back and forth between quieting the panic in my chest, and pragmatic war strategizing. Because that's what we're doing, we're going to war with this thing.

In one of my more vulnerable moments during that appointment, I asked Dr. E if I would see 37 (if you don't know me and you're reading this, I'm 35). He told me based on my age, my blood work, and my relative fitness level (which... he must be talking about something other than weight because WOOF I am not fit right now), I would see 77, at least, in his mind. That was reassuring, and exactly what I needed to hear.

So, we planned. Scheduled appointments, discussed cancelling an upcoming vacation, and talked about contingencies. He told me I'd be on a chemo regimen known as R-CHOP, a relatively common first line defense for this kind of cancer. Then, he gave me the hardest news I was yet to hear at that point: this treatment could render me sterile.

K and I do want kids. We have had some struggles in this area, and it's been a subject of anxiety as we continue to get older, so to be told that I might be medically incapable of conception after the chemo was, to be honest, devastating. But... Dr. E is a great doctor, and didn't even give me 15 seconds to sit in that feeling before he started talking about contingency planning for that possibility. I won't go into detail here, but if you're not squeamish, there will eventually be another blog post about all that to read. It'll likely be hilarious (seriously).

So, K and I left, armed with more information, and I embarked on what has started to feel like a second full-time job: scheduling appointments.

Learning to Juggle: the Scheduling Circus

Anyone who has been through a serious medical diagnosis is going to know exactly what's coming next: a litany of phone calls from schedulers, insurance, nurses with instructions, appointment reminders, etc. In short order I needed to schedule the following:

1. A series of appointments at the endocrinology lab (for reasons alluded to above RE having kids)

2. A PET Scan

3. an Echocardiogram (R-CHOP can weaken the heart, they needed to establish a baseline)

4. a bone-marrow biopsy (yikes)

5. a port-placement surgery.

I was most anxious about getting the PET scheduled. The purpose of that scan is to scan my body and make sure that the cancer is only in that one, inguinal lymph-node and has not spread to the rest of my body, so seeing that result would be the first thing that would give me some sense of relief from the spiral of turmoil in my mind.

Over the next few days, I was indeed able to get it all scheduled, and then it was off to the races.

Now - I live north of the City. If you know Boston, you know that in order to get to the western suburb of Brighton, where my medical facility is, there is basically no way to do it without going through the city and dealing with Boston traffic. I also work in sales, and my take home is directly proportional to how much time I put in. So here I am, scheduling invasive appointments, hauling ass across the city, and then trying to get a full day's work in, and the one thing that I'm told to look for as a sign that the cancer is spreading is exhaustion. HA. Talk about an anxiety booster. Somehow though, I made it all work. I got the scan, and it indeed did not show any cancer aside from the one lymph node. I had the echo, that looked like a solid baseline. I even made a few visits to the endo lab (lord help me).

And that basically catches us up to today. Tomorrow is the bone marrow biopsy, the port gets placed on Friday. I have a very fun work trip coming up that I was looking forward to, and based on the current trajectory, Dr. E is encouraging me to go, so I'll be back from that on 12/5, and start Chemo shortly after.

I have lots more to say here, and I will continue to blog about this, writing is how I process. I also really love to share, and I believe in the value of documenting my experience so that others who face similar journeys can benefit. We don't talk a ton about this stuff in contemporary American life, and I am trying the whole "be the change" thing.

If you're reading this, thank you. The very act of reading it is something you can do to support me. If you've got a sec, reach out! I love hearing from people, the thing I am most dreading is the isolation I'll have to undergo to protect my immuno-compromised body for a few months, so help a guy out and don't be a stranger.

I'm gonna beat this thing.