Migraines, nose hair and a new standard for complete remission?
Posted Nov 07 2009 10:02pm
Hello folks. Been a few days so I thought I'd post an update.
I went yesterday to get my hair cut, for the first time since March when my head got shaved in the hospital. Actually, for those who don't recall (or maybe I didn't post it), back in March, I had it cropped pretty short. I was in the hospital because of the abdominal issues and broken back, and BB came by the room during rounds. He said to Jill "you better get this guy's head shaved before he looks like a homeless person" and pulled a clump of my hair out! :) All part of his charm. :)
Anyhow, I'm glad to be back among the haired. The hair is a little lighter than it was before -- it almost has a "dusty" quality to it that I'm not crazy about. It's also more fine -- not as thick as it was before. But in the grand scheme, these are tiny little things. My hair guy made a good point -- it's not just that the cells were killed by the chemo, it's that the hair contains whatever drugs were pumped into me (albeit in microscopic qualities). That's why they can test drug use in hair for seven years or whatever it might be. So it's going to take a while for the hair to get back to where it was. That's fine -- it's not too far off.
One of the nice things about where I get my hair cut is they give you an amazing scalp massage while washing your hair before the cut. However yesterday I had an over-exuberant washer and really did a number on my neck. At the time, I thought it was a "good hurt" that would relax the muscles but I have a mind-splitting migraine that I got last night. At first, I noticed my vision was blurring -- almost tunnel-vision-like -- and I was worried that it was Velcade killing eye cells or something dire! Then I got the headache and realized the two are probably related. Here's hoping it goes away soon -- I very, very rarely get headaches like this. Maybe three or four times in my life. So I'll be monitoring it closely.
Concomitantly with hair on my head, those little facial hairs we don't think about -- eyelashes, nose-hair, etc. -- have come back. I never completely lost my eyelashes, but they did thin. I did lose my nose hair. One might think this isn't worthy of commemorating on a blog, but let me tell you, you don't realize how much sneezing you do when you don't have anything to keep dust out of your nose. I'm not talking about tumbleweeds growing in your nostrils -- I'm talking about very fine, small hairs that you don't really see (unless you are staring through a magnifying glass at your friend's nosehairs, which introduces a new set of questions). Suffice to say, I'm not sneezing as much and that's good. I had lost the ability to stifle a sneeze, actually, and I was wondering how that was going to play out in a big meeting if I all of a sudden let a huge sneeze rip out of nowhere. Thankfully, this seems to be a non-issue now.
Now, to the medical stuff.
Thanks to our friend LP, whose husband is being treated by BB now after having been treated elsewhere initially (and who is doing very well, by the way), I watched a few old presentations by BB and other doctors at various international conferences on Myeloma. It is funny to watch the clash of styles -- BB is evidently notorious based on how gingerly the other doctors tiptoed around, but he was very gracious in his comments in these clips.
At any rate, this is a couple of years old but one of the points BB made is that complete remission under immunofixation is the first step, but that the bone marrow microenvironment probably houses the myeloma stem cells that don't secrete protein but which are still there, whether dormant or active. It is for this reason that BB wants to see my bone lesions heal -- if they are gone, that's one less place for the Myeloma to hang out, waiting to return. Velcade is very good at destroying Myeloma cells in the bone marrow microenvironment, so I'm glad I'm on that. But the bones do take time to heal -- months or even years. Hopefully, it's the former in my case. We'll get a snapshot in a couple of months. But this is what BB calls "MRI CR" which means no osteolytic lesions in addition to immunofixation negative status. This is now what we're shooting for.
Meanwhile, going out of town for a few days next week to enjoy the last few days before (drumroll) I RETURN TO WORK a week from Monday. Hard to believe so much has happened in under a year -- it was right around one year ago today that my primary care doctor called to tell me that I had an unusual protein in my blood....wow...