Holidays in the Sun.

7/4/18

Well, happy July 4th everyone. I hope you all are weathering this heat wave we're having; I however, have had a migraine for 3 days, partially heat-induced, or at least heat-aggravated. I'm sure most of you close to us know that I'd rather sit frozen to a park bench in 20 degree weather than sticking to it on an 80+ day. At least on the cold day you have long pants on and don't have to wonder what you're actually sticking to on that particular bench. I mean, talk about a germaphobe's nightmare.

We met with a new oncologist last week at MGH in Boston, who came recommended to us from a couple of other docs we know and like. And she specializes in esophageal cancer, so we were hopeful that she might have other ideas, other drugs, other studies, other anything. We learned, among other things, that's Abby's specific gene mutation is fairly rare/uncommon - not something you get overjoyed about hearing. But there was a "Phase One Protocol Trial", (which are basically human guinea pig trials- studies that take place way before FDA approval) that the doctor thought might be good to try. We signed the paperwork only to find out the next day that the medicine only came in pill form, and there was no way to crush/liquefy it, as is the case with many pills out there. However, the doc found one other person, literally one person, who had a similar mutation as the one Abby has, and that person had some success with a drug called "Tagrisso", which our friend Nila has been on for a couple of years, with great results. Nila has been saying to us for m=onths that she didn't understand why Abby wasn't a candidate for the drug , and despite asking a several of docs about it, they all said "no, it wouldn't help because it's not the same type of mutation or cancer". Ironically, it now may be the drug that's next in line. The doctor also put Abby on a wait list for another Phase One trial that was full, but should hopefully have a slot open soon. So for now, our new doc is going to do battle w/the insurance company and hopefully get us Tagrisso, unless something else better presents itself. And she said to us that she is "not unhopeful", and so despite the double-negative, it did indeed make us feel hopeful.

And this Friday (July 6), we also have an appointment with the Director of Esophageal and Thoracic Cancers at Dana Farber, who came very highly recommended, too. The main man, head honcho, host with the most, a big man on campus. We hope that maybe he will have other ideas/options too, and the more brainiacs we have on our side, the better I say.

Abby unfortunately, has been a great deal of pain, specifically in her ribs, where the cancer has spread. It's very difficult to watch her suffer, and she's not able to move much when in the throws of it. She started on a steroid a couple of days ago, and that should hopefully help. Maybe my migraine is a sympathy headache(?) or it's heat and stress-related. Probably all of the above especially considering that my normal migraine meds haven't cut it. But this too shall pass and the vises will eventually be removed from my temples. I just want Abby to feel better, because that will make me feel better than any shitty pills can do.

Finally, I have created a blog where I will be posting in the future, as it give me a chance to fancy it up a bit, add photos, have people follow it, and keep everything orderly. It's still a work in progress, as I'm trying to find better, more and different pics, and I know there are typos and extra spaces, especially in my older posts that were done on my phone from the hospital. So take it all with a non-critical design eye, and please leave your English degree in the filing cabinet.

So, enjoy all your fireworks' displays, keep all your fingers intact, and don't say they're boring or lame because there's a lot of worse places you could be, and worse things you could be seeing or doing- trust me on that. And don't forget your SFWhatever if hitting the beach- you don't want to be fried to a crisp laying in bed in pain- trust me again on that too. Be kind and rewind.

Much love,

The Grants