The fireplace is lit, I made a casserole for dinner, cinnamon-scented pine cones and pumpkins are everywhere, stores have Christmas stuff out… it’s autumn, and I’m not sure where September went. It’s been an epic couple of weeks, punctuated by doctors’ appointments for Max and I, interspersed with Hubs’ travels, and familial duties. I managed to take my brother to brunch, visit with an old friend in the mountains, and bake cranberry white chocolate cookies to acknowledge how relieved I was that Hubs was home, but beyond that, every day has been scheduled to the hilt. I can barely keep my eyes open at this moment.
I developed a broken blood vessel in my left eye, which reminds me the villain in Casino Royale, literally bleeding from his eyes. At 7am yesterday I discovered where old people go in the mornings – to the ophthalmologist! Wow, the waiting rooms were full and I’d never seen such a line-up of doctors (something like 20?). I got a really fun young whippersnapper though, she dressed like she was in middle school, and assured me my eyes were great. She plucked a very long eyelash that was curled inward, scratching my cornea, and confided that Latisse also makes one’s lashes grow the wrong way, like my oral chemo meds. Which is creepy.
After the eye doctor we stopped at Starbucks for pumpkin spice lattes, it being fall and all. Not quite 8 a.m. and the trial doctor from UCLA calls! He tells me I may POSSIBLY be able to enroll in the Clovis CO-1686 trial in a week, and if not a week, then in a month. I’d begin dosing a week after I enroll. He asks me to refresh his memory and I do, though in retrospect I shouldn’t have told him I could still walk 4 miles, because it’s probably not true anymore, even if I did in San Francisco 3 weeks ago. I’m wondering if he thinks there’s someone else in more dire need who should get on this trial… but I also think that patients whose doctors pursue the trial slot aggressively tend to get in quicker. I know that waiting list must be flexible the way Stanford’s list is (it depends on where people are in treatment and how bad their condition is). At any rate, I say I might do a round of chemo to stem the progression, and he says since I’ve been off for a few months, he doesn’t think it would be really beneficial. He thinks I should have the spine mets radiated. He says he’ll be in contact in a week.
I dash home and send him a recap email. I think he called me only because I emailed on Oct 1, and emailed Dr. Camidge, my Colorado trial doc (his friend and mentor) on Sept 30, claiming UCLA doc was not so forthcoming and I hear no one can get on the trial until early Jan 2014. Colorado doc says not so, he’s setting someone up for the trial now – there’s a new amendment. I can only guess UCLA doc got a call and some chiding, but who knows.
Later in the day I have an appointment with a different oncologist from the same hospital, except I’m seeing him at a satellite clinic – in Palm Desert, 70 miles away. Nice drive, when it’s not 120 degrees and humid. Nice facility out there, on Gerald Ford Drive. Hubs gets his flu shot while we wait. An incredibly kind nurse ushers me into the room and tells me they haven’t hired a permanent oncologist so all the Riverside oncologists do rotation at the clinic. Dr. J enters – a good-natured looking, petite gentleman who seems pretty young. He says he read my file and I give him more back story. He notes my allergy to taxanes and asks about reactions. He suggests a taxane desensitization process since I’m out of chemo options and this would allow me to at least try one again. I start to scribble notes and he offers me a print-out of the abstract detailing the procedure. I get goose bumps and think: this guy has come prepared. I like him already. He’s thinking of my situation. A flurry of clinical trial discussion ensues and I explain my need for aggressive management when I progress, and how the mainstay of treatment for me is clinical trials, as I’ve outlived all my options. He says if he were in my shoes he would do the same thing.
I mention that I tried to get an appointment with him for my father, but it didn’t happen, and that he was highly recommended when I inquired about SoCal oncologists at my Walnut Creek hospital. I mention my dad eventually saw Dr. Ou at UC Irvine. He chuckles, informs me that Dr. Ou replaced him as junior professor on the faculty when he went into private practice. His background is academic, his passion is clinical research, and if a hundred patients are on trials at my hospital, 80 of them are his patients. He says my oncologist works very hard, but she’s never enrolled a patient in a clinical trial – I’m the first. I ask why. He says doctors don’t get bonuses for enrolling patients in clinical trials; no bonus and more paperwork!! I think: so I’m just a bonus? I’ve always known doctors get kickbacks when they administer chemo, but is that a reason to withhold referral to a clinical trial ? That’s bullshit!
I ask if it’s a sensitive issue, changing doctors within a hospital – like switching hairstylists in the same salon. Will they poison my meds bag when I go for infusion? He laughs, says it’s not sensitive for him, but it is for my present (soon to be ex) oncologist. Hubs thinks they don’t get along, don’t like each other. And by the resentful tone my oncologist had on her phone call prior to leaving for Berlin, he’s probably right. She was pretty aggressive on that call; normally she’s very passive. I like her, but it’s not a good fit. Dr. J is a much better fit – still not perfect, but better.
When I mentioned that the UCLA doc suggested radiation for the spine mets, Dr. J said, but you have diffuse disease. I said, it would just be palliative, to which he didn’t reply. So he might not be up for that at all. Old onc in the beginning said something like, let’s try chemo first; maybe we’ll discuss radiation down the road. Was she just being amiable since I’d brought it up? Because she does seem reluctant to treat – I’m now 2 months out from the wimpy no contrast chest CT scan she ordered in August (which was due at the end of July). New onc pointed out I hadn’t had a full scan since June – 4 months. Egads. Super scanxiety now. Anyway, we finish the appointment with talk of future agents, and I tell him about AZD9291, which he hasn’t heard of. I tell him it’s a fantastic new agent from Astra Zeneca, who just presented data from their Phase 1 trial in Amsterdam at ESMO/ECCO and it’s the competition against Clovis for the T790m (that’s the secondary mutation 50% of patients get after being on an EGFR inhibitor for awhile) market. Because of the terrific response rates (46% RR, 56% among T790 mutation positive patients), they’ll seek fast track designation from the FDA if the responses are durable. I get goose bumps, I’m so excited. He says I probably know more about my condition than some of the doctors… and I say maybe, but I’m not the doctor and I still need guidance and I’m just as scared as anyone else…
We stop at Hadley’s for date shakes, wasabi peas, and olives. The veterinary office calls to say they’re refunding more fees because a fluid analysis was charged but wasn’t done. Hmm. The vet then calls to say Max has a fungal infection – Histoplasma capsulatum. It will take 4 -6 months of treatment and he’s not out of the woods because of how advanced the infection is and how anorexic he’s become, etc., but he has more than a 50-50 chance of pulling through. Later we discover how difficult it is to find his medication… We spend all night calling every pharmacy around to no avail. Thank goodness for Loma Linda University Hospital pharmacy. They can overnight this rare anti-fungal drug – Itraconazole oral solution. $329/150ml bottle everywhere else but only $289 at LLUHP! Only $5.60/dose for 4 to 6 months! But whatever, we want to help him live.
This morning we go to LLU to pick up the bottle of gold. Parking is a nightmare. Mom is with us. Hubs administers the meds while I feed Max third breakfast. Robo-litter is re-established in heretofore fancy new dining room. Hubs rakes and wets down previous cat outdoor bathroom area to prevent usage. Max on house arrest for a week. I have long discussion with Mom about trust documents as attorney appointment is this afternoon. I get frustrated, she gets a headache and low blood sugar, we adjourn for a rushed lunch. Attorney appointment kinda silly. She signs the new docs, pays him, we engage in small talk.
I stop at a nearby clinic to do labs for tomorrow’s bisphosphonate infusion (the stuff that keeps me from losing bone), Mom gets a flu shot, she goes home forgetting Hubs wanted to examine cause of Check Engine light in her car. I walk around grocery store brain dead. Tomorrow there’s infusion and a flu shot, and hopefully that’s it for the week. There’s a list longer than my arm of other things to do, but the only way they’re getting done this weekend is in sweats.
Max seems different, even just today. He’s eaten about 7 times, used the litter, hung out in front of the fire, tried to go out front by sitting in front of the garage door. He’s napped on the arm of the couch, which he hasn’t done in about a month. After 3 coughing attacks yesterday, I can only hope he improves incrementally each day.
Forking out dough for vet bills makes me realize how small my medical bills actually are. It’s not worth the time and effort to question Kaiser about whether they were billed or not. After what we’ve spent on the cat, it’s a reality/priorities check. Yeah, my premium is astronomical. So are CT scans. I’m sure they hate me, even if I’m healthier than loads of people who don’t have stage 4 cancer.
“Not going down without a fight!”, I proclaimed to the new onc. Not sure if he was wearing a smile or a smirk. Maybe both. Maybe I can inspire him…
Next week: Doc apptmt to get acupuncture referral (so much red tape, added cost, and wasted time with SoCal Kaiser); brain MRI, CT scan, news about UCLA trial…