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She nodded as she showed me the stack of papers.
“Yes, this is lymphoma”. She was saying something else, and I saw her lips moving. I could hear myself answering. Inside I was thinking “this is what it’s like to be aware that you’re in shock.”
I’d seen my labs.
I’d Googled the shit out of my white blood cell counts, my lymphocyte levels. I had come to the conclusion that I either had CLL or SLL.
I even had a running joke with myself that since this fatigue had a more serious cause than the chronic pain I was in, maybe a cancer diagnosis was enough to keep my relatives off my back, and their “helpful” suggestions to themselves.
But the feeling of knowing your body was making something that could hurt or kill you?
I’d had that feeling before. And it wasn’t a pleasant one.
“… take your blood for some additional lab work. I’m a bit concerned that your condition might be more aggressive than we have the resources to treat here. If so, I can refer you to someplace that has…”
I know I said something. God only knows what.
What would it be like to have cancer?
The next thing I know there was a nurse there, taking my blood. I was still in shock but I wasn’t devastated.
Maybe because I had three months to get used to the idea.
Maybe I won’t be crushed until I start chemo, and begin to have the experience we typically associate with having cancer. Though strangely enough, does anyone ever actually talk about it?
We talk around it a lot, sure.
I’m sad to say I have several family members and friends who have cancer or have had it. And I said all the “right” things, and probably some dumb things, in retrospect.
In some cases I even did all the things we think of as right.
But I never thought to ask what day to day life was, with cancer. And now I had to ask myself.
Although I guess what it’s like is exactly how I felt at that moment, and in many moments before it. The only thing that had changed was confirmation.
A little good news after the bad
To my surprise, the lab work came back in about 20 minutes. They have a lab on-site that is part of the facility. It didn’t occur to me just how often you’d need your blood tested as a place that administers chemotherapy.
Now I realize, of course they could do the blood work on site. If you ever have cancer, try to have your treatment at a place where they have a dedicated lab onsite.
(Or transfer your care there – that’s a thing that can happen, getting diagnosed by a doctor but your chemo at a facility nearer to you instead of theirs or a hospital you don’t like.)
The doctor had asked me to wait, I assume now because she was actually looking at my blood through a microscope.
When she came back, she looked… relieved.
“These labs are a bit better than the last ones. You still definitely have lymphoma, but your platelets aren’t dropping.” I can’t pretend I have total recall so all of these quotes are approximations.
She said other things consistent with the stage I thought I was in- early but in need of treatment.
Some people with the type of Lymphoma I speculated that I had often don’t develop symptoms for decades.
I was about 25 years younger than the average patient profile, but inside, with the two of the chronic conditions I have, my body is 40 years older than it looks.
So in comparison to the news I expected her to come back with- this was awfully good news.
I think that spending the last 15 years in and out of doctor’s offices gave me a different perspective on getting diagnosed with one disease or another. So my reaction isn’t the typical one.
In a way, I’m happier to know what I have than to be perpetually wondering and waiting while doctor after doctor is stumped.
In my earlier experiences, it was a long time before the doctors even believed I was in as much pain as I said I was in. So much time passed that an instrument became available that proved to a chiropractor I referred to that I hurt.
But he believed me before I said anything.
It was in his financial interest to be, and I was aware of that. But it was in the interest of the other doctors I saw too- it’s not cheap to manage pain and a lot of insurance plans don’t cover it. I paid for my treatment in cash pre-Obamacare.
To the tune of thousands of dollars sometimes.
Anyway, part of me is still in shock, I know that. Dr. Wang, my hematologist/oncologist (who is an MD and a PhD!) told me to come back in a week for a more exact diagnosis.
Pondering telling people
I knew lots of people who had cancer. Way too many people. As I started to think about what I was supposed to do next, I went back to Google to see what resources I could find.
Was there a good way to break this kind of news to friends and family?
How do you decide whether/who to tell at work if you’re an entrepreneur?
You don’t want to look like you’re keeping a secret, if a colleague happens to discover something from another colleague who is also a friend, who might not be clear on who knows or who doesn’t.
(Or who is just messy! Let’s face it, that happens.)
At the same time, people treat you differently knowing you have an illness, be it chronic pain, nerve problems, a mental health issue. I can’t imagine what it must be like for something as serious and potentially fatal as cancer.
But I certainly found out.
Related:
- I’ll let you in on what it was like to tell people I have Lymphoma, from close friends and family to work colleagues and friends who live far away. Much different than I thought!
- My suggestions for telling people you have cancer in this world of instant everything.
- My reason for doing this series on having Lymphoma.
Coming up soon:
- After that, the CLL diagnosis with CLL-specific resources that helped.