Friday, June 29, 2018

Living with a Treatable Cancer

This being human is a guest house.
Every morning a new arrival.
A joy, a depression, a meanness,
some momentary awareness comes
as an unexpected visitor.
Welcome and entertain them all!
Even if they are a crowd of sorrows,
who violently sweep your house
empty of its furniture

still, treat each guest honorably.
He may be clearing you out
for some new delight.
The dark thought, the shame, the malice.
meet them at the door laughing and invite them in.
Be grateful for whatever comes.
because each has been sent
as a guide from beyond.


So. We all have cancer stories--usually about relatives, and sometimes it's tragic. My father died of an aggressive cancer, and it was hard on all of us for a long time, as it is on many families who go through that. It's a scary word, and in most cases, it's serious enough to warrant fear.

My story is more positive, but it's still a cancer story: I was diagnosed with splenic marginal zone lymphoma in early June. It's a slow-growing, non-aggressive blood cancer that's very treatable.  I'm ok and getting better--I'll get into that a bit more later. I'm writing this because there are a number of things I've experienced along the way I feel might be helpful to others with certain symptoms and dealing with treatment and the the healthcare system. 

One weekend in late April I fell asleep while driving back from a DC sales trip, so I got a room in Columbia Md at 7 pm. I just couldn't stay awake. And then I slept, and the next day I slept in, and when I got back to Lancaster I slept more. 

That evening I sent an email to the team at The Lancaster Food Company saying I needed to step aside as CEO, and maybe out entirely. I was four years into trying to building it into something profitable and I had failed to do so, and I was just tired all the time, and likely sick. 

So I told Craig, Polly, and Chris (board member) then investors. Someone asked how long it would be until I left, and I said ideally eight weeks, but more realistically four or five months. 

But I was ready to stop. And I sort of did; by that point it was hard to work more than a few hours per day. (I need to say my health substantially impacted the company recently, but it was not the primary reason for our difficulty with growth). 

So we started recruiting my replacement and have a great candidate lined up.

Three weeks later in May I ended up in the ER in Chicago for abdominal pain, which led to blood tests at CT scans, which turned up what was eventually diagnosed as splenic lymphoma (a cancer of the blood). It's an indolent (slow-growing) non-Hodgkins lymphoma. 

Splenic means it involves the spleen, and in my case also the bone marrow, which is not unusual; the treatment is the same.  My spleen was sixty percent larger than normal, and some blood levels were out of whack.  The spleen is important for fighting off infections, so removing it increases the likelihood of getting infection, which, if you're a cancer patient, can be, well, bad. Like "don't cross the streams" (total protonic reversal). So I'm lucky because we don't have to remove the spleen. And it's so slow growing I've likely had it for years--I've had symptoms for at least 10 years and just didn't know it. 

The prognosis is very good, and the treatment is relatively benign: four treatments of an immunotherapy called Rituxan over four weeks. No chemo, radiation, or surgery. Twenty years ago they would remove the spleen and hit you with chemo and radiation--brute force. Immunotherapy is a miracle. Most cancer treatment is brute force. 

That said, my first treatment went abysmally wrong; about 30% of people have bad reactions within 2 hours; I lasted about two minutes and went into anaphylactic shock. Let's just say it was like that scene in the Exorcist, or maybe complete protonic reversal  ( ). But we made it through the day, and well make it through the rest, and I'll be able to get back to life, free of the illness, not fatigued, and feeling great about the future. 

Here's what I want to share about my experience: 

Symptoms--Night Sweats If you have night sweats more than a few times, get checked out. I never thought of it as a symptom, but it's a primary tell for lymphomas. I've had night sweats for a long time, maybe 8-10 years. Note that lymphoma isn't the only possible diagnosis! It could be you need to turn the AC on (did I say I'm not a doc?). I also had a bad appetite and didn't really think about it. 

Nurses don't give diagnoses I set up an appointment to review my tests from Chicago when I got back and was assigned a nurse because my doc was unavailable. Nurses can be amazing, but this one missed it, and had to look up the spleen on the web; that was when I knew to ask for another appointment. The doctor gave me the straight scoop within three minutes. And it was a general diagnosis, which meant I had to Google it and everything around it until my appointment with the oncologist four days later. Four days, thinking I had the worst of everything on Google.

Easy on the Google
Google is amazing, but it's not your friend when it comes to diagnoses. One time a test result came in, and of course I searched to understand its significance; all of the search results pointed to a really nasty cancer with a terrible outcome. But it turns out that result is only significant if your red blood cells are abnormal, and mine are fine. I waited three days to learn I wasn't about to die. Those were not my best three was terrifying. Step. Away. From. The. Googles.

You are your best advocate
If you are ever diagnosed with anything, keep in mind you are your best advocate--that is the advice of my friend Jay, who successfully went through treatment for a different, more aggressive kind of non-Hodgkins lymphoma. He also said to make sure you take notes at all appointments, and to have someone with you because you'll miss stuff. Good advice.

Set appointments early...and often. 
Push to get appointments on your timetable, not theirs. They might be booked solid for weeks, but insist on getting in sooner. Ask to be put on a waiting list. Call back. Be the pain in the ass. Jay would approve. Days turn into weeks turn into months. The longer it takes to get the blood tests, biopsies, and diagnosis back the longer it takes to get the treatment started and your life back on track.

Let people help
I'm really bad at this. I don't want to bother anyone, I don't want to be seen as weak (I have been, literally), and I really don't know how to accept help. But your family and friends want to help. Strangers want to help. And they all will. I'm not talking about cancer now--let people help, in general. It's hard for some of us, and maybe that's ego, or culture, or upbringing, but accepting help is healthy for everyone involved. I say this but I'm still very resistant to accepting help. And have no idea what to do with it. I just kind of go blank (which might be a symptom of needing help in the first place).

Be kind
It sounds obvious. I'm wrapped up in my own thoughts so much I'm often inconsiderate. And I can let my displeasure with something or someone get in the way of that edict. And when you're in need of help, you're reminded of how kind people can be, and how it makes you feel, and how unkind people make you feel. Kind is better.

Take time to reflect
...on your life. You might already know what's important, but go over it again. Maybe start by writing a list of what you don't want in your life anymore. That clears the way for what you want. And then keep that list short. 

Mine has five things on it (seven if you count strawberries and ice cream): love, family, health, friends, and music.

The first four are mostly equal and most important, and the last is just a bit of sweetness to add in. If music isn't your thing, fill that in with your own sweetness. Surfing. Painting. Long walks with your kids. Nowhere in there, for me anyway, is business, or new ideas, or community development, or politics. Those aren't core. But that's me. You'll figure out your own. 
You don't need a health challenge to do this. And keep in mind this will be a very emotional time for you--anxiety, sadness, grief, anger, hope, love, happiness--emotion arising at unpredictable times. Notice it when it's happening, and be careful about how you act on it. 

The word is out and I've experienced the awkward conversations as people try to relate you you as cancer patient. Just say hello, ask how they're doing, and share something from your life that's not about cancer. Hearing about you is always better than talking about the cancer, unless the person with the cancer wants to talk about it. You don't know how hard their day has been, or whether they're settled with their condition and path, or how they'll react to your awkwardness.

So the best way to help in conversation is to make it about something else. You can acknowledged it--"hey hope you get better, let me know how I can help, but I'm wondering what you think on the plans for the square downtown."

Make your offer for help specific, like "I can walk your dog any afternoon." I don't need much help, but it's good to know there are options, and good people being supportive.

Invite us to stuff
Recovering from treatment can be boring. Having the condition is scary and isolating. My tendency is to become even more insular, but I know being with other people is a good thing.

I have other thoughts, but we both have places to go, people to love, things to accomplish, new stories to live and tell. Like the doctor said--the good news is it's treatable, and soon I'll be healthy. 

I'm looking forward to seeing you sometime soon, and welcome hearing from you. And encouraging you to invite the unwanted guest in, make some tea, and listen. 

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