Note - much of what follows is actually based on wrong information, but not just the wrong information a Googlin' shmo might come up with. Three different doctors said it wasn't an infection. IT IS AN INFECTION - and maybe more besides, but that has yet to be demonstrated or even tested. I was trusting what my doctors said, sometimes quite emphatically. Oops.
Original post follows, -
So I have been all over Facebook with this, but just FYI:
1. There has been conclusively proven through negative blood cultures to be no infection, so the people who have been trying to treat my ginormous lump (only getting bigger) via antibiotics were barking up the wrong tree. (Tho'the dextromethasone they gave me in the ER this last Friday brought me a ton of relief but apparently it is bad for the adrenal system, bad for the immune system, bad for cancer, and - my specialist tells me - not viable for a long term solution. He believes this is a recurrent cancer and has ordered a needle biopsy and PET Scan (as yet to be scheduled).
2. Turns out that some forms of cancer (lymphomas, for example) can cause both inflammation and fever. I have been running a fever most nights, as high as 38.3. Which is high, but apparently fevers pose no danger to adults (to children, yes). It's interesting, because - like most 811 nurses and ER folks - a lot of people equate fever with infection. But see point one - all bloodwork is negative for sepsis or bacteria, and the antibiotics they DID give me in the ER when I went in desperate did no good. It's not an infection. It's also not a blocked salivary gland (tho' it resembled one for awhile) because my salivary gland on that side was removed in December, and it's not lymphedema (my specialist says that you only get lymphedema if you have had radiation; I haven't).
3. The swelling and pain are affecting my tongue graft, as well, which is very troubling. It looks grey and slimy and my breath apparently really stinks. Tasted a bit like a rotten onion in there while I was getting some ER hydration. Hope that my graft didn't die... can that happen? Dunno.
4. My speech is now impacted. It is painful to speak, and I sound even worse than I did a couple weeks ago (my "new normal" has been less than optimal since December, but it's even worse now). If you see me, I may not be too talkative.
5. I have upgraded from T3s to Percosets for pain management but the whole area still hurts, as does swallowing. Been told to have no more than one Percoset every six hours. Three hours to go.
6. Solid food is undoable. Even super soft stuff like poutine hurts too much. If I pour quickly I can swallow liquids but ANY swallowing hurts, even saliva. I've been sort of wetly spitting out the build up that accrues - each swallow is like someone is digging an icepick into the side of my trachea, from the inside.
7. However, in other news, with Erika's help, I have a new computer. It's missing a bunch of things I want, but it seems pretty workable. It may take awhile to iron out eccentricities.
8. Next up will be an interview with the director of Loving Highsmith, about my favourite writer, Patricia Highsmith. The film opens in a few days at the VIFF Centre. And speaking of which, I promised to get the director a copy of "Girl Campers," the report from summer camp that Highsmith wrote when she was 12. But I gots to root around in some boxes to find it, so I better get cookin'.
Wish me luck. It's funny, I have no idea if this inflammation and pain is no big deal, we see it all the time, it's easily treatable or a TICKET TO CERTAIN DOOM. I'm already thinking of who gets what. Billy Hopeless gets my Angels records...
Nothin' to do but wait for the tests... and more surgery, I presume... and doubtlessly a round of chemo and radiation. Wish that I'd gotten that instead of the glossectomy-and-graft; it was my specialist's original recommendation, which the people at the Cancer Centre disagreed with. I mean, hindsight is, as they say, a bitch, but if I'd had radiation and chemo, I might not be in this position right now. And instead of sparing me the detrimental aspects of radiation and chemo, I'm just gonna have them anyhow, PLUS a funky tongue.
Ah well.
Note: my fever reached a high today of 38.8, but it occurs to me that my mouth is one of the key sites of the problem. My armpit gave my temperature at 37, within a few minutes of that reading. That's interesting, don't know what to make of it.
Back tomorrow with Highsmith stuff!
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