Tag Archives: bone marrow biopsy

You gotta ride. You just gotta. Even, especially, if you’re getting a bone marrow biopsy

This was not the way it was supposed to work out. A couple months ago I scheduled my first bone marrow biopsy. You know, that thing on everyone’s bucket list right? I mean doesn’t everyone want one? More on that later. But the original appointment was for a Tuesday morning at 10:30am. That meant things were going to be tight, since I’d normally get back from the Tuesday ride at 9:40am, but I had it worked out. No problem taking a shower, getting dressed, leave (by bike, of course) for the shop at 10am, switch to the shop bike, ride to Kaiser, lock it up and get registered by 10:30am.

And then, a few days before the appointment, I get an automated reminder call, telling me the appointment’s at 9:30am. What? I was sure it was 10:30. Even had a mailed reminder on the kitchen table that said… 10:30. Logged onto the Kaiser website and I find a SECOND appointment, scheduled an hour ahead of the first. I guess for prep? So plans change, no way to do the full ride, I’ll ride as far as I can up the hill until 8:15am, then turn around and head back home.

Really unfortunate to miss the whole ride this morning. Another stunningly-beautiful morning, and I found myself actually engaging in conversation, rather than gasping constantly for air, with Kevin, Kevin and George.

Everything else went according to plan, although there was no real reason I should have had to be there so early. Well, maybe one. Figuring out how to tie a hospital gown behind my back. There’s got to be a better way; I suggested Velcro to the nurse, but she said that had been tried but the Velcro snagged on everything else.

A bone marrow biopsy is not the most-painful thing someone might have to endure, but it will create pain in places you didn’t know you had. You’re numbed up with lidocaine first, but even that, well, it’s not like the way it works at the dentist. The initial jab at the surface is good and deadens quickly, but then the needle’s pushed further, literally to the bone and a bit into it, and oh yeah, you feel that. She warned me about it, but you really don’t know how it’s going to go because there’s really nothing else like it.

Oh, forgot to mention you’re lying on your stomach, head staring downward towards the floor, while the doctor is explaining what she’s doing mostly to an assistant learning the ropes, the nurse, and occasionally, to me. What’s fuzzy is the timeframe. How long will each step take. Is she going to start jabbing me with something (after very, very, very thoroughly cleaning the area with alcohol, or maybe it’s a numbing agent?) without warning? Yes, she warned me.

Nothing’s terribly remarkable until she starts extracting bone marrow. That creates a peculiar and uncomfortable sort of pain you can’t put into any sort of context. The best you can do is detach yourself a bit from the experience and think that it’s only a matter of time and it will be over. How much time? What are the variables? That’s what goes through your mind, especially when she’s first feeling around for a softer piece of bone, something easier to pierce, and not finding anything. Apparently I don’t have an issue with bone density anymore. The ideal bone is found in a post-menopausal women, she says.

The doctor and nurse both claimed I had much less trouble with the procedure than most, but I mentioned they couldn’t have missed how tense my legs were during the procedure, and at one point, the doctor asked me to try and relax my back. I laughed at that.

She eventually does get through though, the extraction process completes, things are cleaned & sealed up and we discuss how long it will be before we get results from the lab (about two weeks) and what to expect for the next day. The nurse is not happy that I’m riding a bike back to work; in general, the idea is that you get driven home and take the day off. Well, that might be how it works for some, but I didn’t require anything other than the local anesthetic so I wasn’t at all “loopy” and I’m not the type to pass up work in favor of “rest.” And the bike thing? That was a bit weird. It didn’t seem to make much sense to them that someone would ride a bike as transportation. Fortunately my doctor knows that’s just who I am and told the others it would be fine.

Of course, my blood pressure went way up, likely from the lidocaine causing an adrenalin kick. The nurse wanted to see that come down and couldn’t believe I felt fine on my feet. She said she’d find the doctor to make sure it really was OK for me to ride back to work, and I waited, and waited, and waited… ok literally for almost an hour… until I finally self-released myself and left. I did find my doctor in the hallway and made sure she was good with me riding away, which she was. And then, 50 minutes later, I get a phone call from Kaiser wondering if I made it back in one piece. 🙂

Update on my journey with Essential Thrombocythemia

Oncology/Infusion Clinic at Kaiser Redwood City. The “EXIT” sign at the end of the hall seems symbolic yet wasn’t noticed when I took the photo this morning.

Why. Not that there’s an alternative, but that first time I met with my Oncologist/Hematologist, and you’re in a part of the facility you’d never been before, or maybe you walked past and saw gaunt, pale people, generally a lot older than yourself, usually with someone else who’d driven them. You had maybe lost a family member who’d been taken care of in this part of the hospital. And now, without warning, you are there. Why.

On my first visit, I didn’t pick up on much, because I was so, well, scared. Yeah, I know, guys aren’t supposed to be scared. But I was. In a period less than 24 hours I’d gone from having a blood test to confirm an anomaly to emailing my GP about the results to having an appointment with an Oncologist the next morning. No time to intellectualize anything or pay attention to my surroundings. I was in a place I was scared to death of being.

That was just over 6 months ago. Since then I’ve gotten past my severe, primal-fear sort of thing over having blood drawn. A weekly blood test didn’t give me much choice.

Now, on my third visit with my Oncologist, I begin to notice things. The Oncology/Infusion clinic is the last department in the wing. Only an exit door beyond. I didn’t attach any symbolic meaning to the exit sign when I took the picture, but now…

Ironically, it seems to have taken a chronic illness to cure me of my white-coat blood-pressure-spiking syndrome!

The nurse that took my weight, blood pressure and history. Whatever I said, she looked for a way to be nice and reassuring. I didn’t need a lot of empathy today; it seemed almost out of place, wasted on someone not that bad off. Where was she on my first visit, when I was terrified? Maybe she was there, and I was beyond reach.

Looking back upon my admittedly-brief journey so far with my mild chronic form of bone marrow cancer, it’s that first 10 days post-diagnosis that stand out, that will always stand out as a soul-searching, potentially life-changing and exceptionally frightening experience. The only remotely-similar time in my life was when my son had his first major seizure and I’m at the hospital watching the doctors spend two hours trying to stop his convulsing, and in two hours an awful lot of possibilities go through your mind.

Today, exactly 7 months after the first test showing something screwy, I’m in a very different place. I find myself in a sort of competition to get my “numbers” (blood values) to a better place. I’ve come to understand the contradiction of a disease that’s incurable but can be managed. I have moved from my disease defining me to me defining the disease. I have even made progress on my “white coat syndrome” where I would spike my blood pressure on a visit to the doctor.

There remains one major, future-defining test, coming up sometime in February. That’s when I undergo a bone marrow biopsy, the only way to find out if my bone marrow issue shows elements of morphing into something that can progress beyond chronic, making mortality issues as real as they are feared. If you feel fine (which I do), do you really want to know? But in the worst-case scenario there are choices to be made, and risky treatment options (stem-cell transplants) that could make sense but would be crazy to consider now.

I am, all things considered, in a pretty good place. In a bizarre way I can say that I have my health, given that there are few limits on what I can do, and I likely remain in better shape that most people a bit younger. I have a great family, I have found support and solace in two groups for people with Essential Thrombocythemia on Facebook (“Essential Thrombocythemia” and “Essential Thrombocythemia Support Group”), I have “remembered” my faith in God I have greater appreciation for the trials faced by others.

My daughter Becky, reading this, thought it was a bit morbid and depressing, especially considering that I’m responding wonderfully to my medication and it would really be tough to have better results than my tests this past Friday showed. My doctor’s appointment went very well too, as she noted there is no longer any enlargement of my spleen. I am virtually symptom-free; I could not ask for a better place to be than where I am right now. But that doesn’t re-write the story; this is about how I got to where I am, and where I am heading.

The plan (remember, there’s always a plan) is to live long enough to definitively prove that you can literally bore people to death by repeated ramblings like this one. That will be tough to prove without being around for a very, very long time. That’s the plan. 🙂  –Mike–