2 weeks later / August 1st

As I mentioned in my previous outpouring, I had a couple of issues to be determined before any further advancement could be made. First off, I needed to speak to a Financial Counselor at MD Anderson because I have too much money saved & I make too much money annually to qualify for any assistance. Secondly, I needed to get another PET Scan to assess the cancer cells’ growth. Those things have happened.

It’s actually kind of funny to even use the words “further advancement”, since there’s actually been NO “advancement” since my initial diagnosis. I’ve received no treatment of any type up to this point. In late February, I was informed that I had “a nodule”. I expected it to be an easy surgical removal. In late March, I was told that it had metastasized to other organs - thus making it Stage IV, inoperable, & blood borne. In April, I received the prognosis of a 6 month life expectancy unless I received immediate treatment; which could be stretched to 1 year or two with luck. In May, MD Anderson began re-testing blood & tissue samples for “targeting” & Clinical Trial possibilities. I’ve had lots of tests... & more tests... & then more tests. Also in May, I was originally scheduled to begin chemotherapy treatments in early June - two & a half to three weeks later, it was on the calendar. Those dates came & went, but they needed more tests. MD Anderson is a teaching hospital, isn’t it? Yep. At some point, I began to feel less like a patient & more like a great test subject kept on the line in order to disprove the validity of potential treatments. My test results have all proven to be dismal failures... & it’s now August. If I could wrestle with & bottle up my anger, I would truly be a raw force of nature. But the negative energies would only prove to exacerbate my cancer cells. I’m trying to stay zen.

So, finally, on June 26th I was given a concrete treatment plan. HOORAY!!! It was a month late, but I was ready to get it scheduled! Wait... we can’t begin until the Business Office clears it? What? With financial statements in hand, we offered to go right over to their office & prove our net worth. Nope - I had to wait until they had received the treatment plan, priced it, & they would phoned me (tick, tick, tick...). As I mentioned in my previous note, I got nailed to the wall with the demand for $1.9M if I elected to treat my cancer (again, THAT was the conversation opener!). After haggling, I got the chronology broken down to $400K annually; followed by more haggling to deduce that $150K would be enough to JUST cover the initial chemo/Immunotherapy infusions - no maintenance chemo, blood work, or Scans were included in that price.
Okay... well, that was do-able; at least I could get a handle on the effectiveness of treatments & have an idea how my body would handle all of this poisoning. Having received this numeric breakdown, I then submitted that info to the Financial Counselor who had previously told me that she felt like I could qualify for SOME type of assistance. I waited, & phoned, & e-mailed, & phoned, & e-mailed, & even had the chemo oncologist phone her office for a full month. No shit. It took a full month before I could make contact the one person who had offered to help me. Her phone call came on Friday, July 28th. By the way - remember that initial 6 month time frame? Tick, tick, tick...

So, what did she say? She said that I’m stuck in a black hole. I make way too much to quality for assistance & have healthy brokerage & savings accounts; but my cancer treatment costs will wipe me out - completely. Once I go bankrupt, I can then apply for assistance, but not before then. I COULD contact the VA, but I’d have to start over with step-by-step approvals, testing, & paperwork - they’ll want to do their own lab work, Scans, & biopsies (tick, tick, tick...). The Affordable Care Act would benefit me, but open enrollment won’t come around until November 1st. Even if I were allowed to sign up now, they also would require that all testing be individually approved & duplicated. So, with either option, I need to start back at the beginning. Why wasn’t this all done back in May - when I first went to MD Anderson. Everyone knew that I had no insurance! Could we NOT have addressed the issue of $2M at THAT time? Plus, when I go bankrupt... leaving my spouse destitute, only THEN apply for medical assistance? Do you hear it? That ticking sound now consists of deafening thuds.

Okay - that was issue number one, the Financial Catch-22, which needed to be addressed. We’ve learned the frustrating answers to that issue. What else was on the front burner? Ah... getting another PET Scan. This would determine any cancer cell progression & growth. I was lucky between March & May when they said “Unchanged”. Could it be possible that I might remain in limbo a bit longer, or will the cancer now be directing an accelerated schedule? I needed to learn those answers. I had the follow-up PET Scan done this morning. More on the results later in this note, I promise.

As I was impatiently waiting for MD Anderson to regain some compassion regarding saving - or at least attempting to extend - my life, I had the opportunity to do a lot of research... & I mean a lot! In-country, out of country; pros vs cons; probabilities vs random chance; & costs expended for any potential value gained. It’s been ugly! Everything’s a crapshoot - a complete mystery! Behind each option is nothing other than unknown outcomes. Again, this is Stage IV, inoperable, & blood borne. The most I can hope for is a few more months... but at what cost? I’m playing poker with blank cards! The outcomes are only revealed once you’ve made the commitment & have played them. Consider that there’s a large probability that I’ll be miserable, bedridden, & nauseated throughout any treatment. There’s also the same possibility that I’ll experience the same degradation if I refuse treatment. The only real guarantee is that all of the options are ugly - & temporary. That fact that this will kill me is not in question. But if I’m buying six extra months of crawlin’ & pukin’ verses four or five solid months of having a gradual decline, I’m okay with the shorter time frame & skipping treatment all together. But again, will it BE a gradual decline?... or will my brain become invaded & I’ll just become a droolin’, crawlin’, pukin’, probably incontinent &/or incoherent entity while I waste away? Ha! There are no guarantees, regardless of the direction I take! I have a caring, but direct, friend who told me to “stop paying people to prolong my death”. I GET it! I understand completely! Doing nothing but allowing nature to take it’s course IS an option that was already on the table. There’s lots to think about - there IS no “right” answer, no predictions, no guidance. They’re ALL wrong & they’re all unknown! But those are my, & my husband’s, choices.

During my searching, I came across a treatment facility in Mexico. The first thing that struck me was that they incorporate vitamin therapies, oxygenation, & nutrition. These modalities were conspicuously absent in the MD Anderson plan (which actually surprised me). The hospital in Mexico has more freedom due to no FDA constraints. Therefore, they don’t need specific permissions to incorporate Immunotherapy - & it’s already included. The initial plan consists of three weeks of in-house treatment - along with a spouse/partner/caregiver who’s right there with the patient learning everything with them. After the three weeks in residence, continuing care is then transferred to oral medications, including chemo; & out-patient follow-up. The cost for initial check in is about $30K, but will expand to closer to $50K with take away medications & follow-ups. The follow-up covers a five year period. I like this place. We would fly into San Diego, be picked up at the airport, driven to the (enclosed) facility for treatment, & returned to San Diego for a flight back to Austin.

So, let’s have another look at what’s on the table:
1) Do nothing, die naturally. It might be easy & smooth with the time & opportunity to take road trips & enjoy life - what an idyllic picture THAT would be; or it might go South in an instant with my brain & other vital organs being eaten up with cancer & confusion. There’s no way to predict an outcome. I love the idea of fading away gracefully, but that’s unrealistic. This is reality, not a Lifetime movie. I just don’t think it’ll be pretty as my lungs, liver, lymphatic system, & possibly brain shut down! Results are unknown.
2) Commit to the Mexican program with more natural modalities, more support, & in-house training to accommodate a new lifestyle while healing or while dying. Three weeks & $50K; we can do this easily. Plus, after those three weeks, we’ll have a handle on the effectiveness of the treatments, on my tolerance, & on my overall health. Results are unknown.
3) Continue solely with MD Anderson. $150K just to open the door (with additional costs for blood work & Scans to gauge effectiveness of the treatment), followed by the promise of $400K to follow immediately after the initial trial of twelve weeks. Results are unknown.
4) Leave the MD Anderson plan on the table as a back up, but try the less financially devastating option of the Mexican hospital as a first resort, holding MDA as a potential LAST resort. One doesn’t have to preclude the other. MD Anderson isn’t going anywhere... at least not while there’s cash on the table!

Why have I decided to come clean with these plans now? I said that I needed to get a current PET Scan to compare with those from March & May. I had one this morning. It’s not good news. My brain remains untouched at this time - which is very good news, but the cancer cells within my lung, liver, & lymph glands ARE growing. I no longer have the luxury of waiting. I think it’s time for us to make a decision.

- Gayle -