Random brain dump on July 29.
I sent this email on Seattle’s hottest day EVER, which is the day Hank and I met with the oncologist to get an idea of how we’re going to treat (and beat!) this monster.
It is 105F (40.6C) outside my house. It’s about 11 degrees cooler inside — but that’s not much of an improvement.
This is an incredibly random brain dump. I apologize, but I’m melting and, yes, I have a brain tumor — two, in fact. That’s my excuse and I will stick with it until they zap it out of me.
Here’s the plan and various thoughts, needs, rants, whines, and prayer requests in no particular order.
1) Gamma knife (stereostatic radiosurgery) for the two brain lesions on Wednesday the 5th of August, with preliminary MRI on Tuesday the 4th. The fresh hell of this surgery is the many follow-on scans to see if it really worked and all the associated waiting for yet more potentially devastating news. Ain’t it great? Bear with me. I’m still walking through the Valley Fear and Denial Verging on Nearly Complete Mental Breakdown. I haven’t arrived at the Oasis of the Heroic Cancer Patient yet, and quite possibly never will. The truth is that I either walk through this or I die, and my current plan is to complain loudly with each step. I met a couple of Heroic Cancer Patients when I was in treatment last time. Annoying creatures. Completely slappable.
2) 6 to 9 months of chemotherapy starting ASAP. The original thought was 4 to 6 months, but we’re going to get aggressive with this cancer, and blast it — and me. Drugs that you can google: Abraxane (side effects neurapathy, nausea, low blood counts, hair loss), and Avastin (side effects high blood pressure, blood clotting problems, nose bleeds, and kidney function problems). Goody. We’ll start treatment maybe as early as a couple of days after the gamma knife. To arrive at this decision (for people who have referred me to other doctors locally….), my doctor (Dr. Ingber – http://www.southlakeclinic.com/physicianinfo.cfm?physicianid=13) consulted all the doctors in his practice, the tumor board (yes, every hospital has one), and the following local doctors — Specht, Rinn, and Linden. The consensus was 100% as to this course of treatment. I have a second opinion with Dr. Rinn on the 13th, and Dr. Ingber (my doctor) encouraged me to keep it just to get a face-to-face and ask any other questions that I might have, but I think I should just get started with this since everyone’s recommending the same thing. NEED: I’ll be getting chemo once a week for three weeks on/one week off. Hank will be able to cover some but not all of the appointments. We do, after all, have a kid who needs attention from his Dad. I requested late-week chemo treatments, but don’t have the complete picture yet. If anyone can give rides to or from, let me know. I’ll start a list and give you the schedule when I have it.
3) We will not operate on the lung right now, but will instead reassess the lung and rib. The doctor did, however, give me an article about lung surgery for single lesion versus watching it through chemo and the difference in statistical survival rates for doing versus not doing the surgery is 9 months versus 79 months. There are other contributing factors in my case — especially since my case is so highly unusual that there just aren’t any studies that really compare. First, my cancer is considered “indolent.” That means it’s lazy-assed cancer, lying about in my system, taking up space, leaving its dirty socks in any old organ, asking to be waited on, and probably smoking in the bathtub. So, I don’t know. I need to talk with my doctor about that surgery again, but I know for sure you can’t do surgery and chemo together and expect to heal, and chemo is better for the rib. Sigh. Now I’m going to obsess about this ALL NIGHT LONG FOR NIGHTS AND NIGHTS ON END. Oh, and all day long too. Any opinions? This is a new study, too — last updated January 2009, so I can’t use the “well, they have new things now” justification for igoring the uncomfortable bits.
4) We will be doing a test to see if I have the BRCA gene. We didn’t do it five years ago because at that time it required all kinds of authorization and and incredible amount of money, plus then it made no difference in treatment. So, sorry family members, it’s actually better for me if I have the gene because there are some new drugs they’re studying that have been having great results (PARP inhibitors — Drug motto: Nobody wants uninhibited PARPs), which would be good for me. It would, however, be terrible for my family, and for Daniel and any future offspring if I’m a gene carrier. I don’t know how to pray for (against?) this one.
5) My survival time between my first chemo and the recurrence has been greater than 36 months, so that’s a huge contributing factor toward long-term survival. Note that the more optimistic statistics I’m citing here have only to do with the lung and not with the other locations. Subtract for those. The best statistical chance I have of becoming disease free that I can parse from this article is 2.4%, given the random and weird nature of Mr. Indolent. Mostly the news in the article is grim — particulary because of the brain lesions — and puts me in chemo for 9 months and then dead 3 months after stopping treatment. Yippy. Again, the doctor emphasized that my case is extremely unusual and there are absolutely no truly directl comparitive studies. I hope to be around to pester every one of you well beyond my statistically allotted 12 months. Your assignment is to pray that I can be your #1 pest for a very very long time. God and statistics don’t have much to do with each other.
6) More information about triple negative breast cancer: http://www.tnbcfoundation.org/promisegrant.htm. Komen is just getting around to this issue…
7) If anyone local wants to do something with Daniel all day on the 5th, and possibly the 4th too, please let me know. He doesn’t really want to come to the hospital, though I gave him that option just in case it would make him feel better.
8. I don’t really want to go the hospital either, and asked if I could just mail in my brain, but they said no. So, I start at the hospital at 6:00 a.m. on August 5th, and Hank will take me. Any family member is welcome to visit if you want the delight of seeing my head screwed into a frame while I’m in a semi-awake and probably drooling state. The best prediction they have is that they’ll screw me in early because that’s when the doctor is available, but my wait for the machine will put my treatment at about 3:00 or 4:00, and it will last an hour. As far as visitors, I’m neutral. For something where I’ll be sitting around slightly drugged for most of the day, ya might just make me feel tense and embarrassed.
12) I have numbered these paragraphs out of order on purpose to amuse my co-workers. Yes, Holly (my new boss… yay!) you can forward this mess to the group if you think it won’t scare them.
6) All medical people I’ve been dealing with have been completely wonderful and one even today told me to please whine and complain all I want as that’s what they’re there for. No wonder I didn’t go into medicine. Listening to whiners is a gift I do not possess. Whining I can do.
7) Speaking of whining: I DON’T WANT TO DO 9 MONTHS OF CHEMOTHERAPY with potentially no helpful results, possibly just making the rest of my statistical life perfectly miserable. I want to go live on a goat farm near the beach and die in my tracks without pain, without a second thought, without “treatments,” without tormenting my family, and without warning. Would someone please arrange that? Please note that I’m not all that fond of goats, but they sound a lot better than Abraxane and Avastin. Maybe those would be good goat names.
8. Yes, I will start a blog so you can have a one-stop shop and won’t have to parse through long emails any more.
42) I have a written prescription for a “cranial prosthesis” (wig). That’s kind of funny, but not funny enough to justify everything else. Mostly I’ll miss my eyelashes and eyebrows.