Friday, January 13, 2012


There are two things that particularly suck about this stage of cancer treatment.  Aside from the whole "having cancer" thing, that is.

First, very little is actually happening.  I see Dr. C. once a month.  Ever other month it's MRI time.  Generally speaking, there's nothing to report.  It's like watering a plant.  Plant still alive?  OK, great, don't forget to water it again later.

Second, I have to wonder if every slight ailment or discomfort is some horrible disease or metastasis, and it's not hypochondria because I do have brain cancer, which is a horrible, potentially metastatic disease.  It usually doesn't spread to other parts of the body but "usually" is not "never," and 29-year-olds "usually" don't have brain cancer in the first place.

Case in point, that little pain I mentioned a while back, the one I feel under ribs.  It hasn't gone away.  At first I thought it might be due to the chemotherapy, as unexplained pains are a common side effect and I've had two sets of X-rays taken of my torso, one by an oncologist and one by a pulmonologist.  Neither saw anything of concern.  ...except I feel something that concerns me.  There's something causing this.  Lately I can feel something pressing on my ribs when I stretch, and I wonder if the right side of my abdomen isn't just a little bit distended along my flank.  It could be my mind playing tricks on me.  Or it could be another tumor.  Or maybe a blood clot.  Or an organ swollen for a more benign reason.

That side has always been a little odd.  I lost some weight in college and when I took a deep breath I could feel something rubbing against the bottom of my ribcage, like it would naturally fall on one side but my inflated lungs would push it to the other.  I still get that sensation sometimes.  Sometimes it would "catch," and I'd get a stabbing pain if I tried to inhale too deeply.  I always thought that was normal, like a "stitch" that some people get.  It would always go away on its own pretty quickly, as if it were a muscle cramp.  Who knows, maybe that's what it was.  Maybe it was unrelated.

But I take solace in one simple fact: my bloodwork is rock solid.  Nearly perfect.  Not just in terms of platelet count and the like, but on my CBC I fall directly in the center of normal on all readings save one, which is still within normal bounds.  Were something impeding the function of any of my gastrointestinal organs, that would show up in my blood.  The question is, would all of it show up in a standard CBC?  After all, they can't tell everything from that little test strip.

Maybe I'll ask for a full course next time I see Dr. C., just to be sure.  Either way, I'm going to get to the bottom of this.  I can feel something there, regardless of what the X-rays show.  I don't know if it's swelling, or a cyst, or a tumor or what, but I need to figure out what it is, and take care of it if it's going to be a problem.

I got lucky when the neck thing turned out to be nothing but a cheap mattress.  I hope my luck holds out.


  1. I stumbled across your blog while trying to determine an appropriate way to dispose of extra Temodar. I have really enjoyed reading it!
    I was diagnosed at 31 with a right frontal lobe anaplastic oligodendoglioma (6cm) with the 1p19q codeletion. My tumor was discovered 6/17/10 after my PCP ordered a CT due to new onset headaches. We all figured that the headaches were stress related, as I was moving and planning a massive wedding at the time. Similar to your story, the docs estimate that I'd had the tumor 15-20 years. I'm still not certain if my type A, OCD personality was the result of the tumor or not :)
    I had a very successful complete resection at MD Anderson in Houston by Dr. Nick Levine and underwent 12 cycles of Temodar. The plan was to put me on a full dose, but my platelets would not stay stable on a dose higher than 210. We have decided against radiation at this time, as I do not appear to have residual tumor evident and I theoretically have a long life to live. I will probably have radiation if the tumor recurs in the future. I tolerated the chemo ok, I guess.
    I found your blog to be very insightful and connected with your experience on a lot of issues. I'd love to communicate further (maybe via email?) about my experience with Temodar. I may have some suggestions for you, but I'm not sure if I am ready to post everything in such a public manner. Although I've read a lot of posts on the Cancer Forums, I've not registered or posted there either.
    Thanks for sharing your story and I will be passing the link along to friends, family and my docs.

    1. Welcome, Laura. First off, I'd love to hear any questions you might have but I'm afraid I can't seem to find your e-mail address. Could you please post it, or e-mail me? My address is knightlyqblowguns(at)hotmail(dot)com.

      I'm sorry to hear of your diagnosis, but I've heard that oligodendroglioma is possibly the least aggressive kind of glioma, so if you've got to have one...

      I can't really advise you on how to dispose of Temodar, other than that you probably shouldn't flush it down the toilet.

      As for your personality (and my own), who knows? It's really hard to say what part of one's personality is due to the cancer and what part is really "them," or what parts are really them but they were more susceptible to turn out that way because of the cancer. I wrestled with this idea for quite some time around the time of my surgery, and started to ask myself if I could even rightly define the cancer as something "other." It's as much a part of me as my healthy brain tissue.

      There's always a question of whether or not to use radiation in cases like yours, where it isn't clear it would really do any good but would likely cause you some side effects and would preclude you from further radiation treatment should you have a recurrence.

      I'm glad that you like my blog enough to pass it along. It's always been my hope that sharing my experiences would help another patient.

      Hope to hear from you soon, Laura.

  2. Hi! you must be tired of visiting hospitals and doctors, but please check where the pain is coming. You might worry for nothing and you have enough to worry about!
    All the best!

    PS: have you been book-hunting?

    1. Yeah, I'm going to take care of it next time I see my NO, which is in about two weeks. I think it can wait until then. I've done some research and found a few other things it might be and the pain isn't steadily getting worse, so I don't get the sense it's an emergency.

      I haven't been book-hunting lately. I spend about 12 hours a day reading and writing so I don't have a lot of time for outside reading. I'll get to it at some point, I promise. :)

  3. 12 hours is a bit too much. Is this your choice or the working rhythm in the USA/of your job?

    1. Mostly for work, then a little for my own projects.