My oncologist is brilliant, did I tell you that?  His name is Dr David Headley and I adore him.  He’s an older oncologist and has headed up transplant programs and such, so he’s no slouch when it comes to cancer.  He was playing me like a Strativarius violin by this time.  He had already suggested Faslodex, a month intramuscular injection that changes the shape of your estrogen receptors so estrogen can’t fill it and stimulate cancer growth.  I was OK with that one.  No problem.  But it takes a few months to work.  I don’t think I was ever really consciously aware of how really bad things were.  I was getting up walking the halls 2-3 times a day.  On that cancer ward, that’s not the norm.  In fact, three folks died while I was there.  Many people go there to die.  But I was planning on a jailbreak as soon as possible and I needed my strength!

It was on one such walk that I crossed paths with my oncologist.  We said hello.  He said, “We need to talk about treatment.” I said, “We already have.  I started Faslodex.”  He said, “We still need to talk about treatment.”  Dammit.  There it was.  After all this time of respecting whatever I wanted and letting me run in whichever direction I chose, he was closing in on me.  When he came into my room that day, I braced myself.  I had had these talks before.  They always wanted to poison me.  Here we go again.  But he’s such a maestro and he knew me so well.  He looked at all the “outside” testing I had had done like the blood test results from Greece and the chemo assays from Rational Therapeutics.  He looked at what substances had shown promise with me on those tests and, unlike most oncologists, actually took them into consideration.

He began presenting his thoughts to me and John.  He said he was thinking about my quality of life and that, since I hadn’t touched any chemotherapeutic agents in the past decade, he wouldn’t have to “blow my head off to make me better.”  He suggested a single-agent treatment with a low dose of Taxotere.  I had had its sister drug back in the day, Taxol, as part of my stem cell transplant so my cancer should’ve been resistant to it.  But the Rational Therapeutics assay said I was not.  He said he was going to also present my case to his colleagues at the Rocky Mountain Cancer Center to see what they would suggest. As was expected, there were eight different ideas which he presented to us.  After we heard them all, I thought his resonated with me the best.  So, as a team, I actually committed to this toxic treatment in order to save my life.  I still didn’t know how serious it was, on a conscious level, but something in me must have for me to have made that choice.  I didn’t know, until weeks later, they were calling in hospice.  My daughter had even called some different organizations so my husband wouldn’t have to.  I knew none of this.

The next day, the hunt began for a spot to put a chemo port in me. Chemotherapy is extremely toxic and it will burn your veins to pieces if you put it in a peripheral vein.  So it has to go right into your heart so it can be pumped everywhere all at once.  They put those ports in a chest vein that leads to the superior vena cava.  Since I had radiation to both sides, back in the day, that was a difficult task.  The right side had already accommodated a port from my original diagnosis, so could not be used again.  The left side had no good access because of the radiation.  Neither did either jugular (and I have to admit I’m glad it’s not in my neck).  Now I was beginning to get scared … if they couldn’t get that port in me, it was game over.  My surgeon saw what he thought was one location that might be viable so off we went to the OR … again.  Another thank God … he dropped it right in on the first try.  I started chemotherapy and Aredia (for the bone tumors) that very day.

A couple of days later, my bowels began to open up just a smidge, which was what had to happen before they could release me.  I had to poop.  And finally I did … a tiny, tiny bit, but hey … something’s better than nothing.

Funny thing about that … since I had managed to keep my NG tube clamped off for 12 hours without a problem, it was time to get rid of it!  On Easter Sunday, out it came!  Oh the plans I had for all sorts of food flavors!  But lo and behold, come evening, that familiar feeling in my belly began and I start vomiting again.  So very reluctantly, I called for the nurse.  I knew that NG tube had to go back in again.  Many of you have told me I’m so courageous.  And I really haven’t agreed.  But this time, I’ll own it.  That was damn brave of me!  Here we went again, numbing it all then shoving that tube back in me.  But mercifully, the insertion only takes less than a minute if that patient isn’t trying to hurt someone.  Sure beats vomiting over and over again.  So much for my best-laid plans!

Now, after the hospital had lost all those litres of fluid, that was bad.  But I was still very ill … too much so to really pay close attention to what was going on.  But John did.  He didn’t miss a lick.  I had started feeling a little stronger once they were getting IV fluids and nutrients going into me, but before the port, I had a line on the inside of my upper arm called a PICC line. Well, that thing kept blowing access and I had to go without nutrition for a day here and there.  The delays waiting for people to fix these situations were hours long.  Anyway, my urine was slowing down and I began to notice it was darkening.  I was feeling punier than I had been.  About 4am, one morning, John and I were trying to figure that out.  Suddenly, he walked over to the pole o’ devices and checked on my fluid.  The amount of fluid I was getting had been reduced by half and no one told us.  And no one did a damn thing about my brown urine.  And now I knew what had caused it.  Damn nurses not doing anything about it.

That was my wakeup call.  I woke my ass up and started micromanaging.  Of course, that made them livid.  I became health bitch incarnate.  When the IV nutrition drove my blood sugar up to 175, I nearly had a fit.  They stood right there and tried to tell me that wasn’t a problem.  Ummmmm … read a frickin book.  If you are not diabetic, that’s a problem.  Anything over 120 causes cell damage.  Oh but no … don’t worry your little head, sweetie.  So let me get this straight … you are the medical professional and I am the patient.  You are supposed to know these things, not me.  But you don’t.  And I do.  It’s that kind of thing that really lights me up.  So yeah, accountability was the name of the game for the rest of the time I was there.  And hospice was not called.  And I left that hospital in a wheelchair instead of a body bag.


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