Eliminating Chris' Cancer: Phase 2
I want to start off by saying thank you to all those who have helped us out, your support is the only thing that has made it possible to keep going over the past two years.
There is light at the end of this tunnel though, and so it is time to switch gears. The next 60 days are the critical period, and the months to follow nearly so, but if we can push past this we may finally see some sunshine for once.
Chris (big Chris, not little Christopher) is continuing his war against the cancer that seeks to destroy him. What we thought was in remission back in 2012 turned out to be hiding in wait.
It struck after we completed a cross-country move. Between being the medical caregiver for an almost fully bed-ridden husband, and full-time Mom to a ball of energy and guile that is my darling little non-verbal, adhd, and possibly autism-spectrum escape artist Christopher (age 4), there has yet to be the breather needed to anchor in and attack this properly from a position of strength.
Here's the good:
- Prognosis is good. If we can get Chris into surgery/treatment without any further serious delays, there is a good chance of elminating the remaining cancer and returning to a somewhat normal household down the road.
- Chris is currently being seen by a rockstar group of physicians and surgeons, specializing in treating his Cancer. They are some of the best in their fields.
- We have all the specialized medical equipment needed to monitor and maintain Chris's health while waiting for surgery (providing the insurance decides to cover any of his medications!!
- As soon as Chris can work again (3 to 6 months, depending on speed of surgery), getting ahead of everything will become rather straightforward (Chris' professional experience is in Information Security, Forensic Analysis, and has done training in those and related fields for a couple decades).
- Derpwovles! A family friend has gifted us three Husky puppies to raise with our old pack leader dog, and the energy has been very uplifting on the spirits of everyone involved (when it hasn't been wrecking our sleep schedules) and they've integrated well into the home.
Here's the bad:
- The oncologist at this juncture wants to do targeted radiation and maybe injected alcohol, which is a multi week treatment that we don't know how Chris will tolerate.
- I need to pay rent, and other monthly bills which we currently have neither funds nor income for (like insurance), as well as fix Big Green (our vehicle) because I need to give the borrowed vehicle back to her owner. And prep for winter. And, and, and...
- We've finally gotten the insurance company to recognize Chris has hit his personal out of pocket max (see below). However, There's only a month and half until things reset, and the meds that currently keep him alive and me functional enough to care for him are around $4700 each month, some of which the insurance is still refusing to pay.
- Potential surgery dates (the oncologist is doing some final testing to see if that is even the most useful route) are in later November through December. While that is a huge delay with the stage of treatment we are in, it will still get covered under the insurance which is a distinct positive.
and The Ugly:
- The ACA and Harvard Pilgrim (first the one, then the other) have spent the last year finding any and every reason to cancel insurance whether they had any legal justification to do so or not.
- This latest time the cancellation was even done silently and then backdated (one of several reasons we won the fight to reinstate his insurance) to make the claim that he never hit his OOP maximum. They still owe us tens of thousands from out of pocket expenses we sustained from that, money I suspect we will never see despite it being promised in 90 to 180 days.
- It has been a hard won battle to get Chris' Insurance fully reinstated, but even after victory, they are refusing to pay for critical prescriptions that he's been taking for two years or more.
- Time is in a critical phase now, so I need to make sure that he gets exactly what the doctors say he needs to make it to surgery alive and arrive as the healthiest him possible.
So here we are.
I'm looking for operating costs for the next three months to keep a roof over our head, some heat through the winter, necessary medications, and transportation.
Also good: the borrowed vehicle is being signed over to us.
The bad: we don't have the cash to get it registered, which we're doing before the end of the week in theory, and we don't have cash for gas, food, and meds.
Surgical consult is the 2nd, not the 3rd. If we can manage to limp that far.
Also there's meeting the deductible and out of pocket max prior to the surgery, which is pretty daunting, and managing to survive while Chris recovers from surgery and the following radiation.
As a bonus our debit for our last fill up of heating oil in December bounced, so they're running that debit again, plus the one for the delivery of oil we're taking tomorrow will be debited in a few weeks.
Still got insurance to pay, rent to pay. But I got some necessary medical equipment, meds, and food so far so there's that.
Surgical consult is on March 2nd. Need to keep up until at least then.
*Tries again* nope that's worse.
Fine, I'll just come out and say it.
I want my husband back. To his full capacity. Or something over 10% at least. Cancer is preventing that.
I want to have more hours in the day or less of a work load. Cancer is preventing that too.
I want my son home. Cancer is preventing that too.
I want to pay the health insurance, pick up necessary meds, order heating oil before we run out, get current on the rent, get current on electric, get current on everything, make sure the dogs have dog food... Finances are preventing that.
If I can get everything done that the current financial situation is preventing, and Chris gets cleared by his cardiologist and therefore get his surgery and radiation done, the cancer can be destroyed.
That's the bottom line.
I've got $500 in meds to pick up from the pharmacy today, we're $300 short on January's rent still and then we have the whole next month to deal with. And I'm exhausted. And discouraged. And hurting in ways I can't even talk about.
And Chris is worse.
So that's where we are.
We're just so damn tired.
My jaw frickin hurts. Why? Grinding my teeth so much. Even in my sleep. Because stress and worry. We can't make rent. We have deductible to raise in order to get the surgery done.
Then there's Chris's current state:
"I hate this..."life"... this damn cancer... everything else... it's no way to live.
I can't stay awake... several times a day, randomly without any warning, I have an overwhelming and irresistible need to sleep... and then I sleep for anywhere from 20 minutes, to 14 hours... and most of the time, get no rest from it...
...but yet when I'm so exhausted I can't think sideways nevermind straight, I can't sleep.
I can't drive alone or at night, because I may fall asleep suddenly while driving.
I can barely stand or walk, and the pain and exertion of doing so leave me gasping for breath for minutes, just from the few steps from my bed to the bathroom.
I'm barely alive... I'm not living... I'm just barely existing... and I can only just barely manage to stand it...
The only thing that keeps me going is that I need to be there for my family...
...and right now, well... that's not going so great either....
... not only have I not seen my son for two months... I had to consent to the state giving my aunt guardianship, because I can't take care of him like this, and Mel cant take care of both him, AND me...
...Hell... Mel can't even take care of herself right now, because the stress of this is making her go mad...
I cost so much to keep alive that I'm a huge damn burden, and I can't even work to earn my own keep, never mind provide for my family.
I am in so much damn pain, all the damn time...
It's really not worth it... except I need to be there, for my wife, and my son...
Now there's one more thing the cancer has taken away from me...
I'll never be able to fly again.
Having had ONE of the major side effects... ok... maybe two... but combine the sleep issue, with diabetes, one coma and one near coma, and now atrial flutter... I'm never going to be able to get a medical certificate again.
This goddamn disease is just taking me apart piece by piece, and taking away the things that make me... me.
More than 10 years of pain beyond most people's ability to imagine.... of progressively worsening disability... of losing everything that has ever mattered to me, piece by piece...
... and the only thing that makes it even close to worth enduring... Is that I need to be there for my family...
... and I can't even pay the rent...
...hell of a thing that...
The way things are... I'm in too much damn pain... this fight is too goddamn hard...
Honestly... the way things are... I don't much want to live... I don't want this pain... I don't want another ten... twenty years of this fight...
...but I have to...
...and I will....
...For my family..."