Wednesday, June 21, 2017

Radiation? To Heck with Tattoos, Be Sharp Instead!

I'm GLOW-ing!
 Zap!

I've started radiation treatments.  10 days of zapping, after that I'm done.

My radiation therapy won't cure my cancer. . . the big masses of low-grade ovarian cancer in my abdomen are too close to all of my essential organs, not worth the "zapping" risk.

But for a few annoying outlying tumors, radiation will work fine! (God willing).  

My radiation is considered to be "palliative care."  Just taking care of a few outlying tumors, nowhere close to curing the REAL problem of my abdominal low-grade ovarian cancer mass.  
But it's still fun, regardless.
 
This machine has hidden ARMS that extend and envelope

In preparation for radiation, I could only think of my deceased sister.  They tattooed her for radiation, to mark the "target" spots.  This week I was at a dinner with a friend who was also tattooed for the same reason.

UVA does NOT tattoo, they use sharpies, and a clear strong tape to protect the target radiation marks (made with multi-colored sharpies).   It works.

And, because that works, shame on any institution that still tattoos. . . Like, we need yet one more permanent scar/reminder?  

I think this is a sex issue. . .Women succumb to tattoos because they are told to, unaware of their choices. I think men condone the administration of tattoos because they just don't innately 'feel' a woman's desire for "body image." And tattoos sure make radiation appointments go quickly. . .

Due to a few seemingly odd, personal, but biblical-based religious restraints, I CAN'T be tattooed, on ethical grounds  Thank goodness for sharpies!

I would advise any woman to ask for sharpie marks and strong clear tape in lieu of tattooing for radiation.  And if your healthcare people can't wrap their heads around that one, refer them to UVA or whomever, but they need to grow up.     Insist on it, and they'll do it.
My Biggest Sister reminded me that back in the 80's (when our 2nd sister died of cancer, tattooed) , they didn't HAVE sharpies.  That was 30 years ago.  Wise up, docs, our goal is to recover from what You Doctors did asap, so we can get back to OUR lives---as far away from medical thoughts as possible.  We need to heal.

Tattoos can only be a reminder of the cancer war we went through.

We don't need those reminders, we need to be able to wash them away.  








Palliative Care Is For Dinosaurs!

I'm getting some radiology now. It won't cure the cancer but will help with a few problematic outlying tumors.  Doc says it's "palliative care."   And that she will hook me up with palliative care docs.
You'd think that after 3 years of cancer I would have known what "Palliative Care" means.  
I always pictured that palliative care meant that you were just warehoused on a pallet somewhere.
So, Call me Clueless!  Now I'm shuffling and reading up quickly like I need to cram for a final--Yes, it IS  Final!  Darn!  OK, so WHAT is the definition of Palliative Care?

As far as I can tell, Palliative Care is the care given when you're terminal. It's not care that would fix you and make you better (like antibiotics for an infection).  
Palliative care is -- treating the symptoms with full knowledge that the treatment is NOT the cure. 
Palliative care is just makes you feel better while you cannot be cured.

My 16-year-old asked me about my health stuff, I replied that besides seeing my oncologist, I would also be seeing a doctor about palliative care.  
"So" was the reply, "you will be seeing a paleontologist?"

Well, at MY age that might not be a bad idea!

Wednesday, June 14, 2017

Free Pass for Not Understanding How Ovarian Cancer Kills

Before I had cancer, I accepted that cancer kills people often. That's a normal perspective. But not really 'deep.'

The grieving survivors of the dead cancer patient are often questioned about details of the deceased's illness, and often they have to answer "I don't know."  And probably feel uncomfortable about that answer, given their love for the dead cancer patient. They're sad. They don't know the details.  They can't answer that.  And that fact alone becomes just one more added sadness. 

Should they have known the details, if they cared enough?  NO WAY!

Surviving friends and family usually don't know the details. They can't know the details unless they were the immediate caregiver or 99% close to it. 
Or total keeners (not in the 'hired vocal griever' sense, of course). 
And so many of these cancer names or types are complicated enough to where most people couldn't remember or repeat them anyway, let alone enumerate the treatments.
Ever feel like you're in a spot-biology-test including only the most obtuse vocabulary items with which no-one but the textbook author is familiar?  Yup.  Most cancer friends and family feel that way when asked specific questions about how their loved ones died.

Many people who have dealt closely with cancer can't help but reach out to others for a mutual understanding of the confusion and grief that they have felt themselves.  And they're often the ones asking all the difficult questions if we even have a whiff of 'cancer-friend' about us. They need to relate, they need to talk it out.
Other people know a few 'key cancer words' and love to direct topics of discussion, but deep-down they are just interested in looking good conversationally, enjoying the concerned closeness, and will forget all said if the hors-oeuvres tray waltzes by closely.
 
Distinguishing the grief-stricken from the curious-and-wielding-conversational-skills is important.  You can lay your heart out to the first and it's helpful. To the second, it's just an exposure of your underbelly. So go ahead, put on your Pirate Pants, and ask lots of questions before you decide, "friend or foe?"And have the cutlass ready.

When I was diagnosed with Stage 4 Ovarian cancer, and failed enough treatments to put me into the "terminal" category, I accepted that I would die of cancer.  Then I found out my estimated life expectancy (July 2017).  OK, got it, let's get the family in gear, set up the safety net for everyone. . .
Cancer is a such a full time job that it's hard to eke out time for reflection (or blogging!). 

So I was "in it deep" for a couple of years before I started to ask: 
"But how do ovarian cancer patients actually die of cancer?"  

The first step was obvious to me, but maybe not to readers. They took out my ovaries, where the cancer started, and the cancer had spread to lots of other parts of my abdomen, which they also removed (still waiting for a requiem for Appy the Appendix).  And they scraped my insides but knew that they couldn't get every wandering cancer cell.   (So. . .I didn't actually DIE)

Then comes the next part, after failed chemo. Abdomen contains cancer cells. Tumors, ranging from microscopic to many centimeters. Hundreds of them. And they keep growing.
But if you really think about it, how would a big cancer lump kill you?   (I still didn't DIE)

Then I got "pleural effusion" in my lungs.  Imagine double-bagged groceries, and there's a pocket of water between the two bags. Pleural effusion is not IN the lung, it's in the lining, and gradually increases in size, and reduces your ability to breathe, within the top 5 causes of death for ovarian cancer patients. Who knew?
Mine disappeared for no apparent reason within a month. (Thank you, prayer-people!!)  
(Still Not Dead Yet)

So now we're back to the tumors of all sizes. . . 
One tumor caused enough grief to where the radiation guys will zap it.  And they'll zap some other outlying tumors, too.  As for my internal huge cancer tumor mass, no way. Too close to everything. Can't be zapped.

I always thought cancer tumors were big masses of cancer cells (which they are).  So I could never really get how they could kill you.  
I'm in my 50's, and lots of people I know have lots of large areas of increasing fat cells, yeah?  (Present family and friends and all readers excluded of course!)
And I guess all this fat just pushes aside all the other guts, yeah?
So if cancer is just fast-growing cells, not enough to even add discernible body weight, how is that really different from getting fat in a different way?

I looked at cancer cells like they were fat cells: move over, more coming. . . Squeeze a little in there and we'll all be alright! Blob out over the belt-line if you need more room. . . How many women can add 20 lbs in one year? Or 40?  My cancer-cell gain doesn't even show on the scales.

I met with my UVA doc.  In three years, Dr. M has never made an error, not even one little bedside faux-pas.  I LOVE her.
We talked about the radiation therapy. Doc brought the CT scans onto screen.  My abdominal cancer growth is a blur of tumor-encompassing-everything.

"So," I said, "It's like a huge mass of goo?"
"No," she said, "if it was GOO, I could get it out. But it's like" (and at this point, she held her hands out with fingers curved like an angry tiger)  "It's like, concrete."

And then I understood. 
"Solid tumor,"  "Calcium shows on the scan." It all came flooding in.    Doc is nice enough to let the realization set in at my own pace, or lend a heavier hint if I just don't get it. . .

I finally figured out that cancer cells, although they are big, loosely formatted cells, aren't just fast-growing squishy things that are competing for space within my body like blobs of fat.
My type of cancer cells lean into my space, harden, lean in more, harden, put pressure on organs, harden, and keep it up until every working part of my abdomen gets so choked up with calcified cancer bits that it can no longer function. The first part to go is my colon. . . if I can't get waste out, what then? And the rest is beyond my bothering with it.

And that's how me, as a low-grade 'ovie,' dies of cancer.

But I'm Not Dead Yet.