Sunday, October 29, 2017

I really hate the first of the month...

As fast as things are moving, some things aren't moving fast enough.

Like getting Chris back to work... or my side project which has again been delayed.

So the good: Chris is seeing the endocrine oncologist at Mass General, and we're working out a treatment plan based on testing.

The bad: the oncologist is at this juncture wanting to do targeted radiation and maybe injected alcohol, which is a multi week treatment which we don't know how Chris will tolerate.

Did I mention I really need my side project to speed the hell up and pay me? Yeah...

So here we are again.

I need to pay rent, and other monthly bills (like insurance), as well as fix Big Green because I need to give the borrowed vehicle back to her owner. And prep for winter. And, and, and...

So here we are.

So I'm looking for 2 things: additional investors for my side project, and operating costs for the next month to keep a roof over our head, heat, and transportation.

I've still got the GoFundMe up and running, PayPal to chris@chrisbyrne.com also works, Google Wallet to melody.byrne@gmail.com, or hit me up on Facebook. I may not respond today, but I will catch up to everyone when I can. If you're interested in the investment part please email me at melody.byrne@gmail.com.

Thanks all,

Mel

Monday, October 16, 2017

When things start moving, they really move...

Chris's endocrinologist called this afternoon. Chris is being referred back to the endocrine oncologist and rock star surgical team at MGH.

Not even a few hours have passed since the endo's office let me know they were sending along the referral and the oncologist's office is already calling trying to set up an appointment.

Bottom line is surgery and radiation will be happening in Boston and will apparently be happening quickly. This is a GOOD thing.

However, it's mid-October. We've finally gotten the insurance company to recognize Chris has hit his personal out of pocket max (family is another deal entirely). There's only a month and half until things reset.

Then it's next year, and trust me, we're not going through the exchange next year, we're dealing directly. That will mean no subsidy, but we'll have the plan with the lowest deductible and out of pocket max that will actually cover all of New England instead of just NH.

... and it will be expensive as hell. Cheaping out turned out to be expensive as hell too. We'll go with the expensive as hell with faster treatment.

So surgery is coming up, as well as multiple trips back and forth to Boston, and whatever babysitting arrangements I need to make so that Christopher is taken care of during that time (including getting him on and off of the bus for preschool). This is going to expensive.

On top of that we still have to fix a vehicle oh and pay the bills, including the health insurance bill for November and December that I don't even know how it will be, because for some reason it changes month to month. Plus the whole roof and food thing. Plus we need to replace the hot tub because it's the only way Chris can currently bathe due to mobility issues, and oh the poor bed needs replaced, badly...

But things are moving. Finally!

Chris sees the endocrine oncologist on the 24th and hopefully, HOPEFULLY, we will get this ball fully rolling by the time the out of pocket max resets on New Year's.

In the meantime we need to stay afloat.

I've still got the GoFundMe up and running, PayPal to chris@chrisbyrne.com also works, Google Wallet to melody.byrne@gmail.com, or hit me up on Facebook. I may not respond today, but I will catch up to everyone when I can.

Thanks all,

Mel

Monday, October 09, 2017

Cards on the table...

So I've been in the middle of a side project for a while now. Years in fact.

I haven't put much cash in, and where I have it's been as a float for an actual financial partner. So don't think donations have been going there, they haven't. I've been more the labor and emotional labor part of this equation. I'm getting a healthy portion based on that. It's not bragging to say this entire project would have died a long time ago if it weren't for me. It's also not overstating to say that successful completion would result in me not having to do any more goddamn fundraising for the rest of my life, at least not for my own family.

However, we're a few weeks out from completion, and the financial part has dried up. No one's fault. Things like that happen.

We're looking for a couple of investors for the next couple of months to finish up. You wouldn't be getting what I'm getting but you'd be getting a very healthy return on investment. I'm not willing to go into details as to how healthy in such a public forum. We're short on cash for this, and that's what we're looking for.

So if anyone is interested please drop me a line at melody.byrne@gmail.com to that effect or message me on Facebook. If we're not on a first name basis or it's not obvious who you are, please include the name or screenname I'd know you by.

Thanks all,

Mel

So the PET scan results came in today...

So the PET scan results came in today...

Here is Chris's explanation:

Ok... preliminary radiologists report and notes showed up on the patient portal this morning... I talked about it with my family first... now time to tell my friends here...
The results are... mixed... I guess is the best way of putting it.
It's nowhere near as bad as it could be... but it's not as good as we had hoped.
First, they confirmed the two large masses or clusters in my neck we already knew about... they're about 1x1 inch, and about 1x.5 inch... consistent with what we saw on the ultrasound.
There may also be a third mass in the same area, but its indistinct.
There may also be another mass on or next to my vocal cords, but it's also indistinct.... That may be what has been giving me the sore throats... it's probably something, but either it's occculted by the glottis and larynx, or it's small and early. That could mean vocal cord paralysis or even losing my voice permanently... or it could be nothing.
That's the good news...
The bad news, is that there is distant metastasis.
The worse news is that it's into my lungs.
...BUT...
There appears to only be one relatively small nodule thus far... appx 5mm in my lower right lung.
If we are INCREDIBLY lucky, it may be a lymph node, and not even be in the lung itself... it's unclear from the report, and I haven't seen the imagery yet.
So... that's bad... not quite VERY bad... but it's bad... any distant metastasis is bad, and distant metastasis into the lungs is just about as bad as it can get.
The best case, is if its just in a lower lymph node, or it's otherwise a self contained encapsulated nodule. If it is, then they only need to take the nodule and immediate surrounding tissue. We pray we are that lucky... but we're not counting on it.
Otherwise, if it's actually infiltrated the lungs... Well, that's not a good prognosis overall... but the nodule is estimated to only be 5mm or so in diameter, so it's small and most likely relatively early. We don't know how aggressive that malignancy is.
They may be able to just get the nodule and some surrounding tissue... or I may need a lobectomy of the lower right lung lobe... Once the lung tissue has been invaded, you have to remove a lot of it, to make sure you dont see additional metastasis or recurrence.
...But it's MUCH better than it could have been.
... Now, the most important thing, is we need to move quickly on the lung nodule. If it has actually invaded lung tissue, then it can spread INCREDIBLY quickly... a matter of weeks and it could be much more serious, or even potentially inoperable...
Also, a guy my size, any kind of lung operation is incredibly dangerous and difficult... I'm as likely to die on the table as from the cancer... and we may even have trouble finding a surgeon or an anesthesiolgist who will do the job.
... So yeah, we are happy it's not as bad as it could be... but it's still pretty bad... and it's now pretty urgent we get moving, in order to keep it from becoming as bad as it could be...
If I die of lung cancer having never smoked a day in my life, I'm going to be PISSED...

So not perfect, but not bad. Survivable.

In the meantime...

Got bills to pay. Hot tub to replace (it's the only way Chris can bathe currently, and while the portable one did us very well, it's both too small and dying), a mattress to replace (being bedridden for a full year is hard on mattresses), and life to deal with. As well as a vehicle to fix.

So yeah...

But fortunately we've got our light at the end of the tunnel, and that's no small thing.

We're going to look into Patreon for dealing with the long term costs here, though after I get some actual sleep.

So yeah, unfortunately still need help.

I've still got the GoFundMe up and running, PayPal to chris@chrisbyrne.com also works, Google Wallet to melody.byrne@gmail.com, or hit me up on Facebook. I may not respond today, but I will catch up to everyone when I can.

Thanks all,

Mel

Thursday, October 05, 2017

PET scan today

Chris's full body PET scan in search of distant metastases is today. After almost a year of delays and insurance issues and everything going wrong, it's finally happening.

Pretty much we're going to find out how likely he is to die. But totally no stress. NO STRESS AT ALL.

I'm still trying to get the bills paid, rent in particular. I'm just a tiny bit distracted by today though.

So please, pray for us. Help us if you can, please.

If you find yourself moved to help, anything would help. Anything.

I've still got the GoFundMe up and running, PayPal to chris@chrisbyrne.com also works, or hit me up on Facebook. I may not respond today, but I will catch up to everyone when I can.

Thanks all,

Mel

Monday, October 02, 2017

Monday Dumpster Fire

Meds to pick up that insurance won't pay for.

Bills to pay, including rent and health insurance.

Crises all around. The shootings in Las Vegas and knowing several people who had relatives in attendance. Friends with relatives attempting suicide. Friends with crimes committed against them.

Shaping up to be a great morning so far.

Would be better if I didn't have $1k in meds to go pick up, and if the damn out of pocket max would refresh, and if it wasn't the beginning of the month.

Well, when it rains it pours.

If you find yourself moved to help, anything would help. Anything.

I've still got the GoFundMe up and running, PayPal to chris@chrisbyrne.com also works, or hit me up on Facebook. I may not respond today, but I will catch up to everyone when I can.

Thanks all,

Mel