Hey, the simple truth of the matter is that people die of cancer. When you're in the survivor battle it can be hard to verbalize this. We tend to have this "let's not talk about the bad stuff, because talking about it makes it real, gives it power, scares us, etc." So we frequently focus on the positives, give all our cancer survivors hugs and positive encouragement, chant the mantra that we can create our own reality and sweep the scary stuff under the rug. But today I got the privilege of talking with a couple of folks that are staring their mortality straight in the face, and doing it with a calm grace that was truly inspiring to watch.
The first person is an elderly woman, in the infusion center to get platelets. Normal platelet count is 150-400 and you can walk around with a platelet count of 80 and in general be ok. Her platelet count was six. At 15 they give you a platelet transfusion. So she is basically a train wreck waiting to happen. Brain bleeds, internal organ leakage - nasty stuff. You really need platelets to do what you'd like to do - like walk around without having your organs bleed internally. So you'd expect this woman to be super stressed, or terrified or something. But no. She just walks in (carefully, because if you bruise yourself when your platelet count is six, you are some kind of fucked.) Sits in the chair, gets hooked up, calm as can be and sucks up the life giving platelets. And oh yeah, she has an incurable blood disease and will be dead in six months. And her daughter is with her, bemoaning how the universe can allow someone to hit and run her car while she's transporting her dying mother to the infusion center. But through all of this, these people are as nice as can be - loving to each other, finding ways to laugh at all the little things in life that you have to deal with to live in the modern world. All the time looking down the barrel of the mother's imminent demise. It's just so amazing to see people cope with this kind of mortal threat with dignity, grace and loving approach. When you talk to them, your efforts to help seem so puny and useless given everything they're going through. But as a social worker told me, we give them a gift when we stand witness to their journey. So my pillow plumping and warm blanket wrapping may not have been much, but I was there (after a 2 hour commute in the snow) and it really felt like an honor.
The next guy is an old Russian. And he just looks like a zombie. I mean, really. He's old, yellow skin, skinny to the point of looking like someone from a concentration camp. He got three bags of red blood cells the day before. At the nadir of my treatment, I got two bags one day and it made me look and feel great. But he had three bags and still looked horrible. So you can imagine what he looked and felt like before he got his transfusion. And here is the dialog he has with the nurse:
"How are you feeling today?"
"Good!" (which is hard to believe, given his obviously whacked out blood chemistry and extremely low weight). "I was a bit tired, but better today. " Translation - if you need three pints of red blood cells, feeling a bit tired is a code word for being flat on your back, unable to move due to a complete lack of oxygen delivery capacity.
"How are the sores in your mouth?"
"Still there a bit, but getting better every day."
The nurse asks him several more questions and although he's not evasive, it's pretty clear that he's just not going to admit to anything really bothering him. And he does it all with a calm, dignified demeanor. Although I don't know the details of his prognosis, he's in WAY worse shape then when I saw him a month ago. If it was Vegas, I would bet heavily that he'll be dead in a month or two.
It's kind of a freaky thing to be in the presence of dying people. Somehow you think they should be wailing or shouting or paralyzed by their fear of dying. But in general, they just kind of look and act like you or me. Granted, they usually look pretty messed up but I've been amazed and impressed that these people manage to keep it together. Of course, they may be doing a lot of screaming and moaning and wailing in private but when I see them in the infusion center, their behavior is really a testament to the strength of the human character. They may not look like much to the casual observer, but I've gotten to know them enough to see the hero and heroine inside. It's an honor to get them a pillow and a blanket and maybe share a story or two.
That's the report from the infusion center. Just wanted to share the powerful things that go on in such a place while the rest of us stress out about whether our favorite football team wins on Sunday or what kind of dressing we'll prepare for our Thanksgiving dinner. Intense stuff, for sure. But rewarding to be able to witness.
Thursday, November 14, 2013
This summer, I had the opportunity to participate in a video for Patient Power, a web site that provides information to patients about a range of health issues. It was really fun - we filmed for about three hours and talked about my cancer experience with a few folks from my care team. I never met a camera I didn't like! So if you want to hear me talk about my cancer journey with an emphasis on the recurrence phase, check out the links below.
Howdy, all! Today I had another six month check with my oncologist and everything is still going well. So - yeah! I've been meaning to post for a while but thought I would wait to get through this visit and summarize how things are going for me. Here's the latest stream of consciousness on my health. If you know me personally and are just checking up or you found this through a web search, I hope this is interesting. If not - well, close that browser tab and go out for a bike ride! Ok, in no particular order, here we go:
- Lots of things are still getting better slowly:
- Lung function. Definitely better. Over the last few months I've basically stopped thinking about my lungs. They just feel normal. I haven't had a PFT in quite a while so I don't have quantitative data, but qualitatively, things are better. Less coughing in the morning, less tightness in my chest when I get up to higher elevations, no wheezing. It's been over 3 years since I had the interstitial pneumonitis (brought on by Bleomycin toxicity) and it seems like the lungs are still healing.
- Peripheral neuropathy in my feet is less noticeable. Still there but less obvious than in months past. I'd like to start ice skating and playing hockey again and see how my feet do. Maybe this winter and next spring respectively for those two events.
- Left arm is working better. I can now swim 800 yards and use my arm pretty regularly. By the end of 800 yards of freestyle my hand has a definite purplish tint so I have still have some problems with delayed blood flow, but again, seems to be better. As the days get shorter and colder, I think I will start swimming more. The only negative is that in the dry Colorado winter air, being in a chlorine pool a lot definitely is hard on your skin so I'll have to be better about applying lotion than I have been. The side effect is dry, itchy skin and since itchy skin can be a Hodgkin's B symptom, I definitely don't want to do anything to cause that symptom, less I get my hypochondria dialed up and start stressing about a relapse.
- Things not getting better:
- Blood chemistry. Hemoglobin is getting a little better (13.1 today) but hematocrit is still about where it was last May (~38). That sucks. I love riding my bike hard and running hard and both are pretty painful when you're anemic. I'm participating in a double-blind study for the use of Brentuximab vedotin in relapsed Hodgkin's patients that have had a stem cell transplant, but I'm pretty sure from my response that I got the drug. And one of the adverse effects of the drug is low platelet counts (mine is 115, low normal is 150). So my oncologist and I are thinking that my anemia and low platelets may be a side effect of the brentuximab jacking around my bone marrow. Another data point is that my red cell average size is still around 110%. This is a sign of immature red blood cells. My onc isn't worried and I'm really living a pretty great quality of life, so I'm going to try to be a bit more healthy in my lifestyle (more fruits and vegetables, less alcohol, fats and sweets) and give my body all the help I can to have healthy bone marrow.
- I have some intermittent, low grade chills. This is the most worrisome symptom since this can happen with lymphoma. But I'm also a bit temperature sensitive, so we're thinking I may have some thyroid issues at work. We took some blood for that today and we'll have results in a week or so. I don't have night sweats, not running any fever, no other 'B' symptoms so we think there's nothing serious going on. But it is one of those nagging things that can be stressful.
- Thin hair. My hair is definitely thinner than it was before. I'd like it to be thicker, primarily as another sign of health. The good news is that I have less grey hair! Anyway, I'm not going to do anything about this either, but it is another subtle sign that my body has been through a lot in the last few years.
- To CAT scan, or not CAT scan? I'm now far enough out from my transplant that I can have some flexibility in how frequently I get scans. The upside of a scan is that you can find problems early and early detection can help long term prognosis. The down side is that CAT scans give you A LOT of radiation and at some point, you start entertaining serious risk for radiation caused illness - leukemia, heart problems, etc. I've gotten a number of CAT scans in the last three years so today we decided that I would not do a CAT scan this month, but wait until next march and then do them for the next three years on an annual cycle, assuming that no other symptoms present themselves. So again, it's a bit of a crap shoot and you kind of worry that you might be sticking your head in the sand and give tumors another six months to grow in your body. Which is pretty much a disgusting thought. But if you get too much radiation, you will get sick. Mutations can cause malignant cells to be produced and it would be a really stupid move to get another cancer from doing so many diagnostic tests to detect a cancer that you don't have. Now that would be ironic - but not good. So that's the decision. If something bad shows up in march there will be a lot of anguish that we decided to go this way, but with no acute symptoms today, I feel comfortable with the decision.
that's it from here. I hope you're having a healthy fall and thx for checking in! Look for my next post where I will shamelessly post pointers to a video I shot this summer about cancer survivorship. ttfn!