6/20/18
Hi everyone. Sorry for the quiet, as I know many of you have been asking about the results of Abby's PET scan last week. As a lot of you have figured out on your own (due to the lack of a cheery "great news" post from me) the findings weren't what we had hoped for. The cancer has spread again, and the chemo/immunotherapy didn't work. Her oncologist essentially has thrown in the towel, suggesting that Abby just stay comfortable (aka hospice) because she really didn't have anything else she could offer in terms of treatments that would help. After a teary minute or two (or five), Abby decided that she/we did not want the doctor's gift of a towel, and that she could take it back please and shove it, because we wanted to continue to fight. I asked about any other chemo drugs, and other possible clinical trials that might be out there. There's another drug, but she didn't think it would help, and probably make Abby really sick to boot. That was confirmed by another doc we like, so nada to that drug (Irinotecan). We left her office weary and teary and agreed to take several weeks off so Abby could rest and get her energy back, and be a better/stronger/faster/meaner/leaner/fighting machine. Plus, no matter what other drugs/therapy we might try, she'd need to have at least 4 weeks off so her system would be clear of past treatments before she could start any new ones.
That night was hard, as was the next day. But once the shock (again) wore off, and I beat a few unsuspecting pillows into submission, we regrouped and I started hitting the phone and web just as hard. And it was hard to tell if our oncologist was also weary from the fight, or was at the end of her skill set, or really just believed there was no hope. I think a mix of the three, as we need to remember that doctors are just people, not all seeing Gods, and they have their own foibles, families and lives and patients. But it doesn't mean we have to always accept what they say as gospel, and we think the truth might still be out there.
So as I was saying, I started doing research, and have a couple of people doing the same. We now have an appointment at MGH/Boston with a new oncologist who also specializes in esophageal cancer. She comes highly recommended from several sources, and that's happening the end of next week. We also have another appointment after the 4th of July with the Director of Esophageal and Gastric Cancers at Dana-Farber. The main man if you would. Also very highly recommended. So things are happening; good things, and we feel empowered at least and are beating the bushes for more information and now have enough links, referrals, web sites, clinical notes, charts etc. to keep me knee deep in research for quite awhile. It's overwhelming as you might guess, and there's a reason why I went to art school and not medical school (besides the fact that, um, I don't think I was on Harvard's radar). But you learn. And you pick up the phone. And you ask questions. A lot of questions. And you bang your head against the wall and do it again. Then you take the Ibuprofen and wash it down with Tito's. Ok, kidding. Mostly.
I/we now also know about "Phase 1 protocol trials" thanks to the wonderful doctor who led the Keytruda trial Abby was in. He unfortunately took a new job as head of medical oncology at RI Hospital a couple of months ago, but we loved him when he was on our team, so I tracked him down and he got right back to me. One thing that always resonated with me that he said after the Keytruda did not work, was "Craig and Abby, there's always another drug to try when it comes to cancer, another trial, another way". Of course he said there's no guarantees, which hey, there are no guarantees in life (yes, I know death and taxes but we paid our taxes and shall not discuss the other). Anyway, he gave me names, emailed people for me, and also mentioned the aforementioned Phase 1 trials. Essentially these are the trials BEFORE the drugs make their way into the bigger, commercial, clinical trials. They need people, human guinea pigs if you would, who are strong-willed, in reasonably good shape (for someone who has cancer) and who has a positive outlook and wants to fight. Check, check and check - thank you for describing my wife. So when we meet with new doctors, hopefully we will discuss all that, and anything else their collective minds can bring to our table, which we hope will be very full by the time we leave their offices.
I am continuing to research, but it does begin to feel like a black hole of information; for every web site and link, there are 10 more to follow the crumb-trail of, and the occasional web site where people have cured their cancer using all sorts of things like Vitamin C, baking soda, and of course, decapitation, which I read almost always, always works. And if anyone is wondering why we didn't do some of this earlier on; we did, to a certain extent anyway. All of the therapies Abby has done were what the doctors thought would work- there have many drugs and they all were a combination of "traditional" chemo drugs as well as "newer" therapies. The thing is, you just don't know what's going to work until it does. Or doesn't in Abby's case. So I/we feel like Abby has gotten the right treatments for her cancer, but fuck, they haven't worked, and that sucks. It really sucks actually.
So now we move forward, one foot in front of the other and occasionally crossing feet, falling and flailing, and hitting the ground. But the key is you get up again and again unless you don't want to. But Abby wants to, and I want to too. What I would like right now is to not feel like a misshapen cotton ball due to that fact that my bed was crowded with two cats and one large dog last night, so the spaces I was left with were irregularly shaped, thus my body contouring to them like a "My Pillow" commercial gone bad. And what's up with that guy's blue satin shirt anyway? Wonder if it's it flammable, and I wonder if he has more than one because the commercials change, but he never does. Vanna White; give that man a washing machine.
Finally, I have been going back and taking all my posts from Facebook, and have created a new blog. I should have it up and running by week's end, and will make sure I post the link so everyone and anyone interested can continue to follow along there. Will keep you all in the loop de loop, and when we know more, you will as well.
Much love from us to you-
Abby, Craig, Ben and Aliza
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