As everyone
knows, my cancer evaluations were rudely interrupted by a broken arm! The
Universe has very strange ways of telling one to slow down! All of those things
that I had intended to get accomplished before the cancer treatments began have
all been put on the back burner because of my lack of mobility & submission
to pain meds. I've been able to bounce back & forth to MD Anderson for PET
Scans, consultations, biopsies, a bronchoscopy, & blood work; but my personal
life - & all of my good intentions - hit a standstill a couple of months
ago! "Getting my affairs in order" has temporarily hit a roadblock,
as have other things!
This lapse of functionality includes my
inability to write these updates, & also to hand write personal notes of
appreciation for the cards, food, & gifts that so many folks have sent to
me during this time! I'm so sorry for my lapse in etiquette! I DO know better,
& I'm trying to rectify that delay! But I'm still quite slow! Please forgive
me!... & don't EVER think that your kindness & generosity are taken for
granted or unappreciated!
Still, during this time period, people
have been wondering what's been happening in my world. Patience is wearing thin
& worry is growing! That's not my intention, so I'll try to get everyone
caught up. I kept postponing while I waited for definitive answers, but that's
not yet happening. Answers tend to bring more questions, & the lessons are
becoming harder & harder to define. But now that my arm is stronger, I
should be a better communicator!
During this time frame, I was deeply
relieved to learn that there was no new growth or expansion of the cancer
cells. The PET Scan from last March was compared with one done in May & the
word "unchanged" was used. Okay... this buys me some breathing room!
Of course, it also means that I've most likely HAD this cancer for quite a
while, but the slow growth allows me a bit of time to consider the options
& get things sorted out. So, where are we?
I
still have an urgency since my cancer is blood borne, is on the move, & has
already attacked my lung, liver, lymph, & possibly thyroid. Therefore,
chemo IS my only choice - there's no surgical option. My fear was that it may
be invading other areas as it surges through my body. But, on the other hand,
if a particular treatment plan will works to attack &/or stop this
invasion, it'll stop it anywhere within my body. Still, I don't want to lose my
pre-frontal cortex in the process! It helps to know, for the time being, that
it's slow. As of now, I remain completely healthy (except for that broken arm!)
& completely free of any cancer symptoms - a fact which seems to astound my
medical team, but delight me! I feel fine - I'm perfectly healthy!
Regardless, I've had a couple of
depressing reports from MD Anderson. The first of which is that, despite doing
repeated biopsies & testing to identify a specific, "targeted",
treatment, have all failed. Finding a target would offer me an extension to my
prognosis - maybe another year. However, no option for targeting exists. This
reduces my life expectancy to about a year, maybe a year & a half. BOOM! To
say that this news was discouraging would be a serious understatement; I never even considered this
possibility! Okay - take a breath & move on... Now, under the heading of
"living in the here & now" is an attempt to balance out how long
I can continue to live with no symptoms & no secondary health challenges.
It's all conjecture. Are the cancer symptoms all going to hit me at once? Will
I just drop dead with no symptoms? When will THAT happen? Do I begin the chemo
treatments now & just hope that it doesn't make me bedridden with side
effects until my body simply gives out? Can I possibly count on that NOT happening?
Do I wait until I get symptomatic to begin the chemo treatments? Do I simply
allow the cancer to run it's course & plow ahead - slowly succumbing to
cancer? The decisions are staggering, the ramifications for all are potentially
staggering. I don't know the right answers! I'm a candidate for Clinical Trial
Immunotherapy. By adding this to my two other types of destructive chemo, my
T-Cells should be supercharged & able to better fight off the cancer cells
& the residual effects of destruction. This is encouraging, but there are
no guarantees for either my tolerance or the effectiveness of the treatment. We
learned all of this on June 26th. This is my only treatment option, so I signed
on. Still, I'm aware that the treatment's a gamble - ANY treatment's a gamble.
We told the MD Anderson team to proceed, but we have the understanding that
it's non-binding. So, THAT'S a lot to think about, isn't it? Need MORE
decisions to have to consider?... here goes:
Even with
the Clinical Trial infusion costs being supplemented by the pharmaceutical
company, the treatment costs are staggering. Let's back up a bit. I tried to
play by the rules; I thought that I'd done all of the right things. Although
I've been self-employed for many years, I was being smart. Since I had no
insurance coverage, I always socked away some investment funds. I was a good
investor! In some circles, I was considered to be a great investor. I have over
a million dollars in a brokerage account, & have monthly income from real
estate sales that equate to a substantial annual income. I DID the work to
ensure both a solid savings & a reliable monthly income to protect that
savings. I have no
debt. I have no children.
Earlier, I mentioned that I received
"a couple of depressing reports from MD Anderson"; here comes the
second blockbuster. About ten days after the chemo info & commitment to
proceed with Treatment Plan XXX back on June 26th, a financial coordinator from
MD Anderson phoned. Brace yourself. This woman opened the phone call with,
"The total costs for your treatment will come to $1.9 million. How would
you like to pay that?". WHAT??? When I recovered from this blast, I said,
"Are you telling me that you won't begin treatment until I liquidate
everything & bring you a check for $2 million dollars?" She politely
said that I could spread that amount out over a few credit cards if I needed
to. Now, bear in mind that, during some of the more difficult mountains of this
trip, the air has been completely sucked out of the room a few times. The first
time was when we heard the words "Stage IV, inoperable, cancer".
That's a stopper! The next time was the response to the question of my time;
"Statistics say that you have six months to live." Six months...
b-b-but - I feel FINE!!! That prognosis was back in April, - tick, tick, tick.
Once again, we found no words, there was no air, we were absolutely dumbfounded.
Breathe - $1.9 million. Alright, I tried
to let my left brain take over. I pointed out to the financial person that I
had absolutely no intention of liquidating my entire life, & therefore
leaving my spouse destitute, for a treatment which was unproven. If I did
liquidate everything in order to proceed, only to then realize that the hoped-for
treatment didn't remove or even budge my cancer, where are we? I explained
that, with no guarantees, I can't do that. Back on May 15th, when we originally
conferred with the oncologist, he expected the treatment costs to be around
$20K per month... twenty thousand dollars per month to be temporarily kept
alive. That's hard to swallow, but do-able. But, we were just thrown over a
cliff with, "It'll cost you two million dollars to even have a chance at
rolling the dice for your life." At my insistence, she then broke it down
to an annual estimate. That boiled down to $400K - the primary treatments &
a year of follow-up, maintenance, chemo. Okay, but I still will have to hinge
EVERY subsequent decision on the effectiveness of these FOUR Clinical Trails -
to be done every three weeks. THAT's what will determine if I can plow through
this jungle & buy myself some time on the planet. In the new estimate,
which doesn't include blood work assessment of the treatments, PET Scans to
check for growth, or continuing maintenance chemo for, at least, the following
year... this is JUST for these Clinical Trail infusions, they can open the door
to me for a mere $145K. It's been a very depressing few weeks! So, remember all
of those original questions about beginning treatment? Sick or well?,
symptomatic or healthy?, functional or chemo-bedridden? Well, let's add the
possibility of spending my life saving in order to buy myself a few months -
remember, the statistical prognosis is now that I have a year to maybe a year
& a half to live. How broke do we get in the meantime? Plus, how sick AM I
while I'm on this journey? Oh, Medicare? I'm 62 - I don't qualify for 3 more
years. I'm not sure that I'll live that for 3 years. Medicaid? I have, &
make, too much money. There's NO assistance program out there which is
available for me. I have to spend all of my savings, then file for bankruptcy before I can apply for any type of
assistance. This is why people get a divorce when then get sick, they can split
their assets. Will that work? Nope. My husband is not a citizen, nor does he
even qualify to apply for citizenship for another two years. He's a
"Spousal Resident". He's in the country because we're married. If we
get a divorce, he's deported. Period. So, if we can pay, pay BIG, I can receive
treatment in an attempt to stay alive. But, if not, we'll need to decide when
to start treatment, & also when to finish. Re-read that last section
regarding all of the decisions that are currently on the table. Remember, I played by the rules, I
saved money. I'm even a veteran. But, there is no assistance available for me
until I go completely broke at the end of my life. Oh yeah, the Affordable Care
Act? We looked into it in January. The costs would be (remember, we have
substantial savings & income) around $65K per year - with a ceiling for
cancer payments. At that time, in January, the word "cancer" wasn't a
reality in my life. We were both extremely healthy. The door has now closed to
the ACA, & I doubt that it'll reopen anytime soon! Speaking of a ceiling on
insurance payments for cancer treatments, I've been a caretaker for a cancer
patient. He had a tremendous insurance policy - the best, but benefits were terminated after a few months. Really.
There are caps, limits, on what an insurance company will pay out. It's a Catch-22. Okay, where was I?
Back in mid June, I got a call from a nice
person in a different section of the financial affairs office. She was nice. We
spoke casually, she liked me, but she asked why I had no insurance. When I
explained that I had been self-employed for so long but that I had substantial
savings, she understood; but she said that she believes there are insurance
programs which may be able to help me. She admitted that the premiums would be
astronomical, but doing so might supply some degree of cost reduction. At that
time, I told her that I hadn't received a cost overview, but I asked that she
send me an e-mail with her contact info & I would get back to her when I
knew more. Needless to say, I've now been e-mailing & leaving phone
messages for that woman! The infusion coordinator, who explained the chemo
& Immunotherapy cocktails to us back on June 26th, phoned yesterday &
asked what the hold-up was. Had I changed my mind about receiving treatment? I
succinctly explained the bottleneck to her. She asked if I wanted the
oncologist to try & get the financial/insurance questions straightened out
for me. I told her that I wanted HER to get it straightened out - please phone
them NOW! The "$1.9M" woman phoned me again about a half hour later.
I gave HER the name & contact info for the MD Anderson insurance point of
contact person & pleaded with her to coordinate on my case. So, it sounds
like things are happening. I'm waiting.
So, I've had this down time to ice my
shoulder, wean myself off of pain pills, & begin gaining some range of
motion in my broken arm. I've been strapped to a recliner - day & night. I
need to build some strength back up but it's now extremely hot in Texas - too hot for exercises
or even strenuous walks! The stronger I can get now, the better I'll be able to
tolerate the stress when I undergo chemo! I've investigated a couple of other
options in cancer treatment facilities while I've waited. A few of them are
located in Texas, with one in Tijuana. Allopathic, natural, combination /
balancing, guessing, questioning. I'll give the financial research person a few
more days to try & find me an option for assistance. In the meantime, I
think I've also decided to get another PET Scan to compare to my previous
reports. By doing so, I'll be able to compare the initial one in March, to May,
& now to July PET Scans. Where's the cancer NOW?... & at what point to
I start chasing it? Tough questions.
By the way, I LOVE the commercial on TV
for cancer drugs. On one hand, the small print cracks me up: the product is not
effective for patients with low or nonexistent PT-L1, & the square root of
the combined total of the residual EGFR must be greater than the baseline
accumulation of all resting SAT rates when calculated over a year period. That
tells me that their Clinical Trials defined a different base patient than me.
MY PT-L1 is ZERO. Then there's the stunning college professor who's still able
to teach classes, after she has a run in the woods with the dog, followed by
breakfast with her husband & getting the kids ready & off to school. My
favorite is a lovely family who are all picnicking, mysteriously, on a
mountaintop - no transport, no facilities. As the praises are sung for this miraculous
drug, a grandson looking person hikes up the mountain & approaches the surprised
group. The pictures are beautiful, but the list of adverse reactions are REALLY
serious. How did they all get there?... & where are they going when her
random vomiting, diarrhoea, muscle weakness, or spontaneous nosebleeds kick in?
Marketing - it all looks so easy!
Although there were a couple stretches of
depression over the past couple of months, things ARE progressing - just more
slowly than earlier expected. I still haven't suffered from "why me"
syndrome, or looked for anyone to blame. All things considered, I STILL have to
admit that I'm grateful for this warning. Yes, 62 is WAY too young to have
terminal cancer, that's a stone cold fact. But it's also way too young for a no
notice head-on collision, a heart attack, a fatal stroke, or any other tragedy.
I'm okay, I am... & I'm EXTREMELY grateful for all of the love &
support from all of you! Thank you!
- Gayle -
