Saturday, 22 September 2012

The Goblin That Ate All My Words




Yesterday we met with Dr. J. We discussed the various symptoms and side effects I’m having,  as  the list progressively gets longer. Most of these, while troublesome, are considered to be in the range of ‘normal’ chemo reactions while on my particular chemotherapy regimen. He gave me a couple of prescriptions to better manage those, which should hopefully make cycle 4 next week easier. 

For me it has been difficult to handle some of the physical effects, but even more frustrating to deal with ‘chemo brain’ as they call it. It isn’t just a matter of my short term memory shorting out; I find that I am losing words.  When referring to something on the street  I couldn’t remember ‘road’ so substituted it for the closest thing that came to mind, which was ‘floor’. Language has been my love since as long as I can remember.  I’m a writer… where would I be without words, without the ability to express myself exactly as I need to? This part wears me down, and I’m told even after chemo ends it may be months before my brain recovers.

The one thing that really troubled him though ( and us!) have been the sudden drops in blood pressure and the passing out /near passing out. He let us know that he has never heard of it happening because of chemo, and like the ER doctor ( he had all his notes and lab tests, yay) he thought it is likely a form of vasovagal syncope.  Likely, in his opinion, a combination of the really extensive surgery ( definitely called MOAS for a reason!) and the battering from the chemo. 

There are some things that have to be ruled out that could point to more serious complications. He didn’t elaborate on those, but he did schedule a series of tests for me. The first is tomorrow (… okay, today, since it is now 3:33 am), designed to test my adrenal system to see if there are issues there. He is also scheduling a few heart tests, some next week and some whenever they can fit me in.  In his opinion its very, very unlikely… but then I seem to be the queen of unlikely things, so we need to rule things out. 

As for the chemo regimen, we continue with the same drugs and dosage, as he feels the side effects don’t warrant a change.  He will be starting me on some type of steroids after the tests come back though, to help with some of the issues.  He also agreed that 12 cycles was extremely ambitious, given the extensive MOAS it was any wonder they could give me any chemo at all. We agreed that given that there is no research on whether chemo does anything for my type of cancer 6 cycles was a reasonable goal. 

I can do that. As hard as 3 have been, if we get to the bottom of the passing out I can do another three. That’s only another month and a half. I would be done before Aiden’s birthday!  I can do that, I can do that, like the little engine that could!

That being said, we wait on tests and monitor. Next cycle is # 4 for me, which had been Dr. T’s initial suggestion in Calgary ( though he defers to the expert here, Dr. J). From here on we mostly play it by ear cycle by cycle, with the goal to try and make it to the 6th.  At the end of the day there has to be a cost benefit analysis to the whole thing --  am I benefiting from it, or is it just making my body weak all over again?

Fact is there simply is no research on it, and as Dr. J said none that he’s aware of to be made in the foreseeable future. There’s just too few of us affected, not enough research funds. 

Anyhow, he’s also started the process of requesting the MRI I’m to have in December, to see how this whole year panned out. 

I’m tired, and cranky, and not looking to be up in three hours so they can poke me some more… but if its for another month and a half only, bring it on!

No comments:

Post a Comment