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Friday, March 21, 2014

Feeling better.

Bad headache day today.

Was forced to medicate it.

Feeling better, now.

I dont't understand why that happens. But some days, it is as though someone were hammering a nail into my head.

I hate that....

But thanks,  medicine.

Pain sucks.

But!  I feel better now.

Tuesday, March 18, 2014

Low day today.

They warned me.

But it still sort of sucks.  Tired.  Achey.

But!  I'm not dead!  that's a plus!

Not sure at all why i've been having these days where i just feel puny.  BP and pulse are a little elevated, a little headache, and a lot of tired.

This is a roller coaster.  One day it's all good, one day I just want to lay down and sleep.

Dr Taylor says to try hard not to give into the sleeping, so I'm writing a little and just resting a bit.  Often after a 15-minute lie-down I feel better.

So!  That's what I'm doing.

My advice ro you all is avoid cancer.  It sucks.

Thursday, March 13, 2014

So! Round 1!

Sitting in the chemo unit at the cancer center; just got an injection of (what I hope to be) well-trained white blood cells that will go after whatever bits of cancerous tissue we didn't either get with surgery or the chemo and radiation.  Interesting.

I don't know if I'm in the placebo control or the experimental group.  I hope I'm in the latter.  Immunotherapy holds a great deal of promise for dealing with cancer that can't be gotten at with surgery (what I have that is left is likely scattered around and hard to get at surgically).

So, here's to successful clinical trials!  I expect to be cancer-free very soon.

Tuesday, March 11, 2014

So, more whiplash, only this time it isn't Kansas Spring weather.

So this morning my radiation oncologists suggested that I might stop thinking of myself as a cancer patient and start thinking of myself as a cancer survivor.  It's early yet, but I like his optimism a lot...

This is the same guy who just a few weeks ago suggested I might want to make a list of things I'd like to get done  this year.  :)

But I'm going to run with it.  I'll get more info from the medical oncologist on Thursday when we start the immunotherapy stuff.  She's a little more cautious than the radiation oncologist, so I'll wait to see what she says.

But in the meantime, that seems pretty good news.

Friday, March 7, 2014

And another thing...

So, here's another thing.

Yesterday was a scan day -- first new scan since treatments started.

It looks pretty damned good.  There's one small troublesome spot that took up a lot of the contrast medium, but it's very small and chances are good that it will get whacked by the maintenance chemo, or better, if I get in the experimental group in the clinical trial, that my own, specially-trained white blood cancer-eater cells will eat that shit up.

But on the whole, it was a very good-news day.  (I adore my medical oncologist: she is amazing and always gives me a hug before she leaves after we meet.)

One thing that I'm struggling with a little bit is being left alone.  I still have cancer (in her words, "there's no curing this") and it has felt good to be surrounded by people at the radiation place, or the Cancer Center in KC.  The thought, though, of this transitioning into a chronic thing that I just have to deal with on my own is a little scary.  It feels fantastic to be surrounded by those people, and the thought of being out here on my own is unnerving.  Yes, I will kick this cancer's ass, but I cannot do it alone and find the thought of going back to my "regular" life a little scary.  Being on leave has allowed me lots of time to process what's going on with me (and to write about it a little, thank you for reading!).  Not having that time is going to be weird.  It isn't that I want to be sick, but at the same time, I feel that I need to carve out some space to be sick and not forget that I have to save some energy for beating this disease.

So I've been thinking more and more about how important social media has been and how important it has been that I can feel all those good wishes and know that there are so many people out there who are on my side.  So I won't be alone in this.

But it's a little weird to get cut loose. I'll miss them.  They're smart, caring, people, and they mean a lot to me.

Other thing is that I am all of a sudden "normal" again, and it's back to the same old grind.  That's a little unsettling, too -- I was pretty unhappy with things last fall (not feeling good about the job, not feeling in control of things), and I don't want to step right back into that...  So my job right now is to figure out what I can do differently so that I don't feel like I'm wading back into the same mud that I left last fall.  I think I can talk to the Dean about that -- and will.

Really weird thing is that when I go to my office, it looks exactly like it did on December 6.  I just left work that Friday afternoon and didn't come back.  Odd that your life can be so truncated like that: my work life just stopped that day like a clock that ran down.  A frozen moment.  (And let me tell you: my office at the end of a semester looks a lot like something blew up in it -- it would only be a perfect frozen moment with papers suspended in mid-air.)  It's not unlike a little time capsule, sitting there on the cusp of my two lives.  I think a lot of two parts of my life: the part before that weekend, and the part since then.  Very different sets of concerns.

But!  I had really good news yesterday, and even amid all these odd feelings, I feel pretty good this morning.  There's hardly any cancer to be seen in my head.  (Did learn something interesting; "paradoxical progression": sometimes treatment can make it appear as though the cancer has actually grown.  They don't know why.  But I don't show that, so I get to stay in the clinical trial.)

And by the way, immunotherapy is pretty cool.  Brilliant idea, and has worked with other sorts of cancers.  And they are going to keep some of my stem cells, so I keep hoping that I'll be like Henrietta Lacks and my cells can go on helping people for a long time.  That would be a neat legacy.  To think that I could somehow help others with glioblastoma would make the leukaferesis worth it.  (Did I mention that involves them sticking a spear into my heart?)

Yay, brain.  Keep fighting!

Wednesday, March 5, 2014

So, here's a thing...

Well, here's something I've been musing on and off about for a while.

People seem to be (for some reason) impressed with the way I'm handling all this.  I'm not sure where that comes from.  I get "brave" and "strong" comments and feel like they're way off the mark.

To me this is one more thing to do, but that's all.  I have had a fairly laid-back feeling about it, and don't think I'm in some sort of denial.  I think I know what's going to happen, but am not feeling a lot (or not consistently feeling much) distress about it.

But that doesn't make me strong or brave or whatever.  It just is what it is.  If I do have a shorter time here than I was thinking, I surely don't want to spend it moping or being afraid or sad.  I just need to go on and live what I get. openly and full-on.

I wonder if it doesn't have something to do with some of the adversity I had to deal with when I was a kid.  After a while you just sort of resign yourself to the way things are, and do what you need to do to get through them.  That's sort of how this feels.

I can remember being in the hospital once when I was about 5 and had started to feel sorry for myself and my mom took me around that pediatric ward and showed me all the kids who were in way worse shape than I was.  That was a good lesson, I think.  Ever since then I haven't been tempted to feel pity for myself.

I just do what I gotta do.  But it isn't heroic.  It just is what it is.