Tuesday, May 26, 2015

"C" is a Heinous Bitch




Last week I met with my radiation oncologist.  He's a somewhat charming guy who is obviously brilliant and has that uber confidence that I very much need right now.  He was probably that guy in high school most shied away from... hard to say, he looks like a linebacker-gone-to-seed.  I LIKE HIM!

I'm not having another surgery.  He convinced me.  Right now, post the nasty chemo, I'm still at a 44% risk of further cancer within 5 years.  Radiation will reduce that to 10%.  Surgery wouldn't get it down that far... and... surgery is:

Just.  Not.  Done.  Post Chemo.

Very irregular, and he said if someone wanted to cut me they better call and talk to him first.   See what I'm saying here?  Uber confident.  I appreciate that greatly.

I saw them today for an initial CT scan and tattoos... everyone gets them.  They take a mold of your body so when you start the radiation you'll settle into the same position every time.  The very difficult part for me is the arms overhead.  Let me explain:

Since I went into RA remission in 2000 I was able to stop taking all of those meds and did okay for about a year.  I started having mini flare-ups so I was put on an NSAID- Ketoprophen that was time released.  If you understand neurochemistry at all I have GREAT receptor sites for this little drug.  It's like Ibuprophen but not.  It keeps me from hunching over like a 90 year old in pain.  So... recently my insurance said "um, no, we aren't covering this because it's time release and too expensive."  My PCP's office sent over en masse a list of all the RA drugs they tried me on through a couple of decades and why I needed to remain on this one (hello, like I don't function well at all without it!).  A freakin' NSAID, for gods sake!  No, again.  Doc did the next best thing, put me on the same drug (just not time release) 2 times a day, and a lower dosage.

A week of this, holy crap.  I'm in super slo-mo.  Feel awful all day, every day, 24/7.  I cry pathetically all the time when I just can't stand it any more (like a half hour ago when I was crying into my spaghetti).



Every joint, back, knees....  I could go on a tirade about how insurance companies should not interfere with a doctors care and the well being of their patients... but they rule the world.  I know, I did utilization review.  And I savored those moments when I could fuss with them using their own standards.   It's the unscrupulous doctors that make the rest of us pay.  Dang.  Okay... but it was just a tiny tirade!

Where was I?  Oh, yes, it's very hard for me to keep my arms up over my head, lying down, with my chin pointed upwards to the left!  They have to radiate the breast, axillary lymph nodes, supraclavicular nodes, and some cervical nodes.  Now, it's true radiation only takes about 10 minutes or so, but today I wasn't in that position for even that long and I had to (slowly) bring my right arm down using my left arm.   <sigh>  Wah!

During this week of no pain relief and having to use a cane to help me stand in the evenings... I felt so alone.  This is normal I guess.  I'm dealing with that, and the C-bitch.  Yes, yes, I have friends, everyone is a phone call away, David is here, I have some family... I have God.  But when it gets right down to it... I deal with this alone.  I can explain what's happening to me, even in fine detail if needed, but the truth is... I do it alone.  I cope alone.  I change my head space... alone.  This past week I felt really alone.  Still do, but I see the relationship between how I feel and the "alone" thing.  If I felt better I know I'd feel better about everything.

Blogs are an interesting way to journal.  David says at least... see I can't quite remember what he said but it was funny and about doing the blog as a way that I could actually finish sentences and have the time to find the words I want to say.  Chemo-brain is still alive and well here.

Had more to say but will do another blog in a couple of weeks.



I figure with this cancer thing I'm building up karma/cred for the next transition... as in I do believe we all just transition from one reality to another when we die.

Over and out.

<end transmission>











Sunday, May 10, 2015

Ch... Ch... Ch... Changes...

A lot of changes happening...

Had a lot of fatigue this last week, wait, that's not a change... hang with me here... it's frustrating when you're feeling spring/summer and want to do a bunch of things but just can't quite make it up of the couch or out of bed.  I did accomplish some things, just not nearly what I wanted.  I did see an SSA doctor last week who "clearly" found a heart murmur.  He listened two separate times.  I talked to both the Oncologist and my regular doctor (had yearly checkup) about it, both think its a little systolic "regurgitation."



Not to worry.  Okay I won't.  I have an Echo coming up this next week anyway so that will tell the story if there's any changes from the pre-chemo Echo.  What are you going to do anyway, right?  I mean, I'm in "show up and they all just do what they do" mode.  My PCP says her husband called it BYOB... bring your own body.  Yep, that's it.

I'm off all the really nasty chemo and will just be going in every three weeks now through January '16 for the Herceptin.  It has some side effects that are less than desirable but those I can live with.  I will see the radiation folks this month, AFTER I see the surgeon for a consult.  If we have to do surgery again it apparently needs to be done before the radiation.

The side effects of the nasty chemo will lessen in a few weeks and fingers-crossed the neuropathy improves, though doc said it may take a long time... (since it didn't improve while off chemo for 6 weeks) and sometimes never.  So we'll hang onto a little hope there.  My feet and hands are so freakin' sensitive, numbness, tingling, painful sometimes, and I have one spot on my right foot that is tickley, that's a new thing.   I would not be unhappy if all of it was tickley... well, maybe, that could get annoying too I suppose.

My right breast... it always hurts.  Varying degrees, but always.

I'm supposed to start on an oral drug called Anastrozole.  Because cancer is so sneaky it hides and cells lie dormant hoping to spring up and come alive at some point and wreak havoc again.  This drug is taken for 5 years and takes care of those dormant cells when they decide to become active.

Here's the month's schedule:
May 12th: Echocardiogram
May 19th: Bone Density Scan
May 20th: Surgery Consult
May 21st: Radiation Consult
May 29th: Next Chemo

Three appointments in one week... OMG!  Not sure I can handle it!

I'm becoming a furry mammal again.  So weird after being hairless for 7 months!  Seems... not right somehow... I kinda liked being hairless.

Grateful for:  being alive (cuz at the worst of it to date, there were times I didn't want to be... just being honest), grateful for David who makes me cry all the time with his awe-inspiring love, understanding, and support... and surprises...















...and who makes me feel like this:





















Grateful for friends and family.

Grateful for my kitty Os, whose real names is Maahes.  Look that one up.  He is a constant companion well or sick.  (deserves a big picture)


Grateful for the nasty chemo ending and the great timing with spring/summer.  Makes it all feel better.  Gardens make it all feel better.


Says it all.