Wednesday, June 21, 2017

Radiation? To Heck with Tattoos, Be Sharp Instead!

I'm GLOW-ing!

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.

Saturday, May 27, 2017

Two Months More to Live!

'Sweetheart' peeking into my bedroom window
Pet 'Violet' sneaking a peek
With stage 4 low-grade ovarian cancer, as probably with most cancers, we can't help but sneak a peek at our life expectancy:
Google "Estimated life expectancy."  
Find the recent research on low-grade ovarian cancer. Double-check it, cross-reference it, find friends in the field.. .
For me, my life expectancy is STILL July 2017. 

 It's May 2017 now. Almost June. Eeek!  Two months to go! (if that).

From the outside view, I seem pretty bouncy.  I'm certainly Not Dead Yet.

After a few weeks with my new kidney stent, I'm back to out-walking my peers again.. . I pause while they catch up at the various hospital check-in desks, I slow down to accommodate their pace. 
CB is easy to be with. . .
And then half a day into it all they are pleased to be as helpful as they had hoped to be, and fulfill their goals of truly helping a friend who wants nothing more than to SLEEP after her clinical-trial Nivolumab infusion. And they drive me 6 hours to get me home again.  
Love them!
I drive most of them nuts. .

I LOVE my friends.  And I can't believe how many truly great friends I have.  
Somewhere I missed how that happened.  

Often it was just TIME that happened.  Our friendships were forged gradually, without our really being aware of it.
Our kids are no longer friends!
With some friends, we got on well while our kids were best friends, who then decided not to be, or just went other ways.  Mommies maintaining friendships despite kids' fickle and temporary alliances

Our kids went to preschool together
But I have other friends that came well before my mommy years and are still as steadfast. And how, in my frenzied youth, did I luck into the fabulous friends I have known since then?
And my Newer friends--Wow!   
Prisky and I at Yogaville

I forgot how to REALLY laugh until K came back (from 1982?).

When I go for my clinical trial infusion out-of-state and 6 hours away, I go with a different friend every time.   A friend that's close enough to want to do the trip. A friend that's generous enough to work with my colostomy issues. And who is ready and able to meet any unexpected medical emergency.  And who can share a bed. And who is really fun for a long drive, dinner out, and a jammie party as we tuck into the hotel. FUN STUFF!!

I am truly honored by how many friends I have that help me and know me intimately.  And that's just the tip of the iceberg!  I have lots of friends who ask and try to help but I never take them up on it.  But they WOULD help, and want to, so it's just as helpful, really!  

And my family puts early 1970's TV families to shame. In a NICE way.
Me and Dad

My on-flight sister caregiver
To deal with cancer we need to live and let love. . or die and let live? Or love and live let? or live love or. . . and let love and life . .? Hah!      2 months to live

Does the wording of a prayer or a blessing count more than the thought of the blessing or the love that goes with it?
Please bless me, however it works for you, it's all appreciated.  

Hubby in my chemo chair?
We've decided to drop the current clinical trial (Nivolumab).  Didn't work for us, although it is a lifesaver for Many.
Too much tumor growth. Time to quit.

One more cancer treatment bites the dust. Worth a shot, though!!
No regrets whatsoever on trying that one.

Next is hormone therapy (tamoxifen) and if THAT doesn't work, we go for the new stuff: Cancer virus vaccine.  They take the smallpox vaccine, modify it genetically, then send it off to your cancer cells.  Which somehow theoretically will all die off while leaving all healthy cells intact.  
Hmm. . .My low-grade ovarian cancer cells are frighteningly similar to normal cells. Which is why I'm only dying slowly. Which makes them hard-to-get.  Which also means that any cancer-killer that gets THEM I suspect could also kill my regular, normal cells.

So please Bless Me twice.

Upper colon has been shutting down all week, every day has been a gamble of whether I'll check in to UVA cancer ward that evening or not.
A tumor is munching into my lower colon like a Pac-Man, and it looks as if my gall bladder will soon be a cancer-cell appetizer.  To help ready the cancer masses for the Big Entrees (Lungs, Liver, etc). Munch munch munch.

And yet, I'm STILL feeling pretty good. . .  GREAT, actually, (when I'm not feeling bad).
Kids are doing great, health is well enough so hubby can get back to work without too much worry, I think I need to get my bike out.  
Got my veggie garden started. . .Hoed, raked, planted. . .

Veggie Garden!  Wow.    I see the Shadow of Me sliding into it.  Kind of Creepy, huh? 
Let's see what the next 2 months brings.  . . Me and my shadow are right at the edge. . . 
Oh no, not really 2 months. . .it's only 5 weeks until July 2017.