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!

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.

Are Donkeys More Fun Than Cancer Patients?

Donkeys approach this pragmatically

I really don't have a lot of cancer research time. . . Sure, I could spend more hours per week getting really educated on latest developments and jamming off to cancer yoga classes etc.   But really. . . . Once us cancer patients get to the point to where there's not much time left. . . we get a bit quiet, we don't want to go to yoga or to whatever else is offered. We need to focus on the REAL stuff. We get a little introspective.

Terminal cancer people are in many ways like really old people, because they are facing death and can think about death seriously. "No, you're going to live forever!" is a nice family response and an appreciated sentiment. And we'll smile and hope for what you hope for, because you're so sweet. I have been on both sides now. . . I think both approaches, healthy and dying, need to listen above all else, and leave the contrary or expected sentiments silent. Real words and feelings that seek a voice despite stumbles are beautiful.

"Play Dead, Pickles!"

While our family are planning holidays, cancer folks are planning The Next Dimension, which is a far further stretch than "oh will we make the 9:40 train?"  

Give Us a Kiss, Honey!

My first glimpse of addressing our elderly was in England, where old age and confusion and care are just a normal part of family life, and everyone settles in at home.  Perhaps uncomfortably, but they all settle in anyway. "Gran" is here to stay. She might cuss from a chair in a corner while calling everyone by the wrong name but she's home.

When I was 8, we moved from Canada to England where the local primary school was the source of all of my friendships.  Most of my classmates had grandparents living with them.  Veterans from WWII. From my age, that meant odd grandpas (we were all warned in advance), and evening meals at my friends' houses of jam and bread. With Grandpa acting strangely.

In the USA, you never know.  In some families, caring for aging members is par for the course, but in other families, dealing with old age care is confusing to the younger set, so both parents and children are facing unsure outcomes, because they have no idea how the heck they are supposed to handle the many stresses involved. 

Cancer affects us all pretty severely.  The person you love, or the budding new mother, or the fun-loving child, is suddenly the sick, dependent person you didn't expect to have to care for this year. 

Would it be a social faux pas to say. . . Donkeys are Far more Fun?

Is she REALLY a terminal cancer patient?

I must admit that it's a bit odd to be writing a blog about a terminal cancer patient, myself, who is still Not Dead Yet.  What part of 'Terminal' don't I understand?

Are y'all getting tired yet?  I'm not. 
I'm still really jumpy and bouncy. 
(Or maybe I'm just nailed to my perch?)

Actually, I DO still crash from my latest treatments, and spend days in bed. But not often. And if or when I spend a day in bed I can still jump out to do 5 loads of laundry and general cleaning and grocery shopping and at least cook a dinner dish to put in the fridge for the family to reheat at sundown.  Phew!

Prayers come generously. The results, to me, are showing quite nicely.

Mentally and Spiritually, I am where I need to be now, and growing and changing positively at a pretty good clip. For those of you who are not religious, you can surely understand the spiritual love vibe. . .
I have close to a thousand people pushing their love my way in contemplative prayer.  It's completely humbling. And very effective.

People who have to deal with others who have terminal cancer get fatigued and understandably are more than ready for some sort of emotional closure.  

If I were from a BAD family, the question would be, "Is She Dead Yet?"

But if you're from my contrary gene pool (Go Canada!) or are friends or advocates, the rallying cry is "No, She is Not Dead Ever! Lab results are misleading! Doctors don't know squat!"  

OK, that might be a little presumptuous, we need to all settle back down to the pragmatic view of "Not Dead Yet." 

Options for true closure on this whole cancer thing are my Remission or my Death. 

Remission is highly unlikely. But Death is sure taking its own sweet time. 

In short, it's a waiting game. And putting y'all in "The Waiting Room" is nothing I would ever wish on anyone, but there you are.  With me.  And I TOTALLY appreciate the company.

Delays on approaching death, and remission that never comes?  Socially, you can't talk about death dates. Tacky as hell. "So, aren't you dead yet?"  "So, when will you actually die?"  I'm trying to address that here on the blog, where everyone can read it and nobody has to face the taboo of saying it out loud.   July 2017. 

But I'm Not Dead Yet.

And with the latest treatments? Jury is still out. July 2017 death date stands until further notice.

But what's the best way to address people who openly acknowledge that they're actually dying? Go for it. Ask us. Us dying people get one chance to be the wise old people. Cancer center waiting rooms are full of dying people, and people who might live through it. A delicate conversational balance is reached with patients in the waiting room. "Does it hurt?"

My Hope Squadron, which consists of most everyone I know and thousands that I DON'T know, pushes all prayers and good thoughts toward my survival. 

Only a few this time!

My husband worries a little that people don't really understand my cancer because I seem so "up". And healthy. 

In 2014 I had a really fun uplifting friend on the UVA hospital cancer floor.  I was a newbie to cancer so he was gentle in his choice of subjects and stories. He was British, so his energy and humor was a refreshing reminder of what I loved from years in England.  Once I really delved, I found out he had two weeks to live. And then I returned home to my family.  And am still here. Not Dead Yet.

   

Flying Into a Cancer Countdown

Sometimes in life you get to fly.

You stand on a surfboard and balance on the wave. Your skis sketch the powdered surface of a mountain, barely touching the snow. You sit at the bottom of a pool in a warm, watery silence like a jellyfish in a soft, safe blur. You lie on your back in a meadow and feel your soul moving with the clouds to the sweet smell of grass. Or you just hear the music of your child's voice who, for the moment, is entirely, 100%, happy.   

Oh hold on. Terminal Cancer! What? Really? Me? Oh. Actually, maybe not. Or maybe so?

There is a time here in Virginia, USA, where the earth stands still. 
It only happens once in a summer, (not every summer), after a rain, the clouds are so thick, the sun is so bright. But the sun is only in the RIGHT spot for this event for One Day. 
As the sun sets, the entire landscape turns a bright neon yellow.  The plants, after the rain, are happy and breathing and growing before dusk. But you can SEE them grow and breathe. 
Like an old English legend where animals can talk on Christmas Eve--on this day, you can hear and understand the plants. But the entire sky and EVERYTHING is bathed in a completely impossible shade of neon yellow.

My husband had forgotten the years before. He watches too much news, so the intense neon glow made him worry.

Me, I stepped out away from the house. I could feel and hear the plants and trees growing, just as I have done before, just as our people in Kansas can actually hear the corn growing. Been there, done that, very cool!  


With two steps off into the grass and with an eye on the sky, I was flying, growing with the plants around me in the thick cloud neon bright grow light wonderland that happened for a moment that I could step into.

You would think, as a terminal cancer person, that every minute counts. It DOES, but sometimes it doesn't count for much. With a hubby and kids you just ride the wave a little. Some minutes are spent cleaning out the dryer filter. Some minutes are spent trying to unclog the drain. Eleven months to live. . . I still need to vacuum the house.  Kid flips attitude for a day. . . that's one whole day in my countdown, not many of those left.

I know that I need to focus on my family
But I can fly so easily. . . just one step into the grass at the right light and I'm there.

Can Choosing the Wrong Shoes Reduce Your Life Expectancy?

I just had dinner with a newly-diagnosed lymphoma patient who had suggested a clinical trial to his doctor. His Doc strongly advised against it.  Good job.

What is the sound of one hand waving?

Clinical trials are best used for people like me, who have already pretty much run the gamut of standard treatment, and whose cancers are resisting all "normal" treatments. My chances of surviving cancer as a guinea pig outweigh the alternative, which is Surviving Just By Maintaining a Happy, Bouncy Attitude 
(aka "Static Wave of Vertical Springing Movements In Emoji-like Manner").  
I think Queen Elizabeth, God bless her, brought 'static waves' to an art form. She was Emoji-happy years before internet.

Newbies are wise to have clinical trials on their radar, but trials are really more of a last resort, not a primary treatment option. . .the stuff that your doctor orders is worth a try, and might have a 90% response rate. Trials don't know the response rate until after you've taken the trial, yeah? Could be 2%.

I finally figured out HOW to choose a clinical trial.
(If you're really interested in how-to details you can link to my pdf about Searching for Clinical Trials).  But suffice it to say that I chose the trial drugs I wanted, then found the closest hospital that offered those drugs.

There are a few steps to be taken before you get into a clinical trial. I think the first part is they check your sanity and ability to communicate. Then you sign the papers, get the blood tests, have a CT scan or a biopsy or whatever to prove that you have a nice cancer going. . .THEN you get to start the trial.

Hmm. . .looks promising!

So. . . I drove 5 hours from northern Virginia to North Carolina, and paid money for the clinical trial doctor visit, and the blood draw, and signed all the papers. The 'Financial Care Counselor' told me that if my insurance doesn't cover it, no problem, they'll put me on a payment plan that I can afford even if the bills get well into the thousands.  Happy Happy Happy.

Then came the stalling. . . The clinical trials team is facing a possible glitch in insurance, and say I'm the first self-pay patient they've seen. They say that the sponsor of the trial (Bristol Myers) demands insurance coverage. Then a couple of days later, no, it's actually not Bristol Myers, but rather their own hospital, that is having issues with my "self-pay."

But aren't I only responsible for paying for standard-care cancer treatment, and the drug company will pay for any extra expenses for their clinical trial drugs and extra tests?  I asked.

Yes,  they said.

So I cannot receive standard-care cancer treatment if I pay for it personally, because I'm also involved in a clinical trial? I asked.

Hmm. . . I think it would be hard for this hospital to justify that one. And they're evading answering that question.

Standard-care treatment for a broken arm is to take an x-ray and put a cast on it.
Standard-care treatment for the flu is to take your temperature and send you home with fluids and tylenol.
Standard care for cancer is a bit more complex, but it's all still according to the book.
Standard-care treatment is something that I did as a "self-pay" when I went in for my initial evaluation and doctor exam.  I am officially a self-pay patient in good standing now.
It seems that this hospital has lots of those.
 

Just trying to get treatment here. . .

So should I now be eliminated from a clinical trail because I'm a self-pay patient?  Does the National Insititute of Health support that? I don't know, but I doubt it.

It's enough to make your head spin

Head's up. . . if you have medical treatment in the USA, and do not have insurance but pay cash, they usually drop the bill down 25 to 50%.   Insurance, at a few hundred dollars/month, also demands you pay a fee for every visit.  So. . . If you see a specialist for $500, and your insurance charges you $300/month and a $200 deductible (fee) for that visit, you've just paid $500 cash to see your specialist that was "covered by private insurance". Get it?. 
But if you were uninsured and get the cash discount, you may only have to pay $250 total.

I have bigger problems. . .

Now that we have Obamacare in the USA we get fined for not buying insurance ("How can that be legal?" we ask. "Do we also have to purchase tea from Boston again?")  But if you're actually going to doctors regularly, the Obama fine + deductible + insurance bill is usually still more expensive than just paying cash with the cash discount (and affordable payment plans. . .us poorer folk have no hope of holding money "out" for a 12% return anyway). 

The clinical trial underlings were ready to denied me entrance to the clinical trial due to payment methods. So I took it up a notch. Then they weren't sure, then no. Er, yes. No. Dunno?
The woman who manages incoming patient finances called me.  She was lovely, clever, and kind. But she let it slip. . ."you could pay in advance for the CT scans. . ."
Is it your hospital policy to have patients pay in advance for standard-care treatment?  Blank. Switch subject quickly.


This North Carolina hospital has no record of my income, assets, taxes, finances, credit score, or resources.

I think that I was initially denied entry into this clinical trial because the trials intake staff are guessing that I'm a little financially shabby, and they're not allowed to ask if I am or not.
The answer would be "not," but they don't know that because they're not allowed to ask, yeah?
Now their Supervisor is looking-into-it-without-calling-me-back-as-promised. 
We've all met those ladies, right?  

I asked her about the self-pay policies, and whether self-pay precluded me from participating in a clinical trial there. We were all at that polite-but-taking-notes stage.
"We can't tell you ANY of our hospital policies," she said. 
Any? I thought. Really? Even the Slippery Floor policy?  I thought. Or the Fire Alarm policy?
"I'm going to e-mail someone to ask about our policies," she said
"Who are you going to contact?" I asked.
"I don't know." she said
"You're going to email them but you don't know who they are?"
"I won't tell you who I'm e-mailing for advice because I don't want you to contact them."   
Scary!
And THAT was the supervisor of the clinical trials team.  Not quite the Hope-Giver.

My life expectancy expiration date is July 2017, but my husband accidentally leaked out today that it's sooner than that.
One month of bureaucracy is 8% of my entire life (before hubby comment).  
In this month, my CA-125 cancer blood count has jumped from 95 to 185. 
In the time it took them to Not Act, my cancer load doubled.

I don't need to like this chosen North Carolina hospital. But they have the clinical trial drugs that I want, and I feel strongly in favor of my choice in clinical trials drugs. 
My Virginia hospital is lovely, but they are running out of FDA approved options for me, (we're on to the lesser-prescribed chemo that gains a couple of months, or hormone therapy which does not hold my vote of confidence at this stage, at this time.)
And my hospital doesn't have any immunotherapy clinical trials to offer. Darn it.

It just happened that I came as an anomaly to a private hospital that seems to be flexible, as are their fluctuating financial and terminal-cancer-caregiving policies.
But perhaps not so flexible if they guess you're potentially shabby.

Perhaps if I had spent a little less time working with my family and a little more time ordering shoes on Zappos I could have seen this thing through with more credible authority? I would have had the RIGHT strappy sandals instead of just color-coordinated flip-flops, reeking of poverty.

Unfortunately, my advice to cancer girls is WEAR THE RIGHT SHOES.   It might matter. 




Since I wrote the above, my lovely patient advocate got the ball rolling. 
Then the RIGHT person in the financial office called me a few days ago.
"This should only have taken a few days!" she said. "They should have given it to me!"

I got the call today. I'm in.  
A chance to be Not Dead Yet for a little while longer! (OK, only a 10% chance that  I'll respond, but it sure beats Zero!)

I should start my clinical trial Next Week!
And it's so hot outside that I'm going to wear flop-flops anyway.

Whatever it takes to keep cool, I say!