In memoriam Naomi Matsunobu

Laurie Anderson – For a large and changing room. This piece feels very cinematic and architectural to me, very New York. Two things Naomi seemed to be. I wanted to play music for her, those last days. I felt so helpless, having to leave, knowing I would never see her again. I wanted just a few more hours. I never understood the rush. It accomplished nothing. Sigh.

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Looks like another non-existent Christmas season

It’s 5 days since my first infusion of MK-3475, Merck’s anti-PD1 immunotherapy drug, in clinical trials for non-small cell lung cancer and melanoma.  It’s been fast-tracked by the FDA for melanoma, so if the data is smashing, it could be approved very quickly (for melanoma). While I think it’s a good thing that three large pharma companies are racing to be first to market with their anti-PD1 or PDL-1 drug, I hope safety and thoroughness aren’t being sacrificed.  We all know that many long-term side effects can’t be discovered until way down the road, but I wonder if there aren’t markers early on to point to possible problems.

I’m vigilant as regards pneumonitis. I’m already short of breath, and it has not improved, which worries me.  Of course I have a couple of pulmonary embolisms… I really just wish I could know sooner rather than later if this is going to work.  No such luck, I’m told.  One just can’t know if it’s working or not, at least not right away.

I’m exhausted.  Seriously, like run over by a Mack truck and beat with a baseball bat.  I can sleep standing up, it’s that bad.  The night after infusion I had severe chills and my already off-the-scale pain escalated into the stratosphere.  Today is the first day I’ve had any relief – I’ve increased my morphine dose by half and am now taking percocet simultaneously (there is no such thing as breakthrough pain – I’m already there, all the time).  Worse pain? Apparently things could get worse before they improve – inflammatory response and all that.  I’ve heard others are also experiencing increased pain… and itching.  Yeah, more itching all over.  So I can’t get comfortable, as sleeping on any part of my body for over 4 hours produces excruciating pain in that area – heating pad, pain patches, cushions, etc. notwithstanding.  I haven’t had an unbroken night’s sleep yet.  I sound like a mental case.

Thankfully, cannabinoids are allowed.  Hurray, cannabis isn’t illicit!  I just have to muster the energy to make something. Am working on that tonight.  Topical application of cannabis-infused olive oil works fairly well, but is very temporary and I don’t have much of it.  I’ll have to source it in larger quantities to be able to use it as a massage oil. Also helps the itching. So that’s immunotherapy so far.

Meanwhile, the Christmas season, like sand, is sifting through my fingers.  Time just laughs at me.  Energy laughs harder.  They conspire to keep my eyes from being open long enough to accomplish anything as seasonal as sending cards or shopping for gifts or even making food.  Resistance is futile, I should just give in.

So, edibles recipes.  I’m thinking shortbread.

 

 

Scared

I feel like crap. I’m quite nervous about this wash-out period before the trial. I think I had a similar period prior to the last trial, but I wasn’t having complications… or was I? I wasn’t that far from intervening therapy though, only a couple of months. I had an oncologist who was paying attention.

Maybe the blood thinner is what’s causing the headaches, and the stomach aches. The pain is really escalating. Tuesday just can’t come soon enough, and I have to drive myself to and from treatment! Well, that’s because I’m staying the night at a friend’s house, otherwise I could probably have someone take me.

I had very little motivation today. Did some chores, watched a lot of Christmas movies. Just felt yukky, tired, in pain, short of breath. I’m seriously tired of feeling ill and not being able to get a full night’s sleep.

I hope and pray anti-PD1 treatment works.  So many people have died this month on my online cancer forum, it’s hard to be perky. I find it ironic that all the nurses at the hospital marveled at how cheerful I am. You’d never know it by what I write here. Strange, isn’t it?

PE, and I don’t mean the class

This may become a rambling, stream of consciousness, meandering post. I’m writing on my phone as I descend into the mists and hollows of painkillerville, from a hospital bed in a room with a view which i  now can see only because my roomie checked out. I’m on the far side of the room, with a lovely view of the hallway. This is my first hospitalization ever.  I’ve landed here due to – surprise – pulmonary embolism, aka blood clots in my lungs. No surprise actually, it’s somewhat inevitable, but I’m still disappointed.  Lung cancer patients have something like a 70% greater risk of getting them than other high-risk folks, including cardiac patients with leaky heart valves, though maybe not post-orthopedic surgery patients. Cancers secrete many pro-inflammatory substances, among them pro-coagulants, hence the high risk for blood clots.

Staying active and hydrated, taking aspirin, wearing compression socks when traveling, etc all contribute to preventing clotting events. However, at some point it seems bound to happen, especially to those with advanced disease and, I suspect, who are heavily pre-treated.

I’d been feeling lackluster, experiencing more shortness of breath (SOB) than usual, but recovery was quick and I chalked it up to progression. Being winded by the routine airport traverse of parking lot-ticket counter-security – boarding gate was a surprise/disappointment but the general conclusion was that I probably wasn’t quite healthy enough to go Nashville. I went  anyway and it was alright, except for the two arctic storms which rolled in back to back the last day there. Anyway, lack of stamina and low energy levels exacerbated by an ill-suited travel companion amplified my awareness that I was heading downhill fast and maybe should’ve stayed home in favor of completing clinical trial screening procedures in order to begin treatment a week sooner. Brilliant, Captain Hindsight!

I went to ucla for a battery of tests on the 9th. A looong day without pain meds, capped by a 3-hour drive home. I popped pills, went to bed,  disregarded phone calls that came  in at 9pm. Turned out to be the UCLA doc, calling about the blood clots.  Thankfully he emailed. Per Murphy’s Law my printer was on the blink and Hub, having now caught the flu from being run down, drank NyQuil and crashed while I was almost in tears trying to print the scan report and figure out who could go to the ER with me. It was almost midnight on a Monday night.  He angrily got dressed, slugged down a shot of espresso and brought me.  Thanks to technology I was able to email the report to the ER doc. A resident came and did her assessment, wrote it up and her supervising doc seems to have approved it. I got in at 12:15 and by 4am I was barely moved to a hospital bed. Once settled in I sent Hubs home – he looked miserable and felt worse, I’m sure. The orders were released around 5 and I finally received my first shot of Lovenox, a warfarin-free “blood thinner”, along with some morphine and all the usual pills I take. I badly wanted to sleep but it was not to be. Between breakfast and what seemed like an endless parade of people taking vitals, then blood, asking questions, checking my skin, etc. I was convinced there was a conspiracy to keep me from sleeping.  I will say, however, that the nursing care was cheerful and efficient, and the food not bad.  Eventually I just passed out until another resident came in… who was the antithesis of the ER resident (who only wanted to follow the UCLA onc’s orders) and was obsessed with defying the orders.  I was so annoyed but had confidence that my local oncologist would do the right thing.  And he did.

I’m home now (got home Wednesday night).  I now have to shoot up Lovenox twice a day until the pharmacy gets in a supply of Xarelto, an oral, non-warfarin blood thinner. I have friends who inject themselves with insulin every day, so I won’t complain. I have bruise dots at all my injection sites, but mostly I have to remember that I’ll bruise and bleed easier, and will take longer to clot, and must be very careful of injuries. I’m just glad I have this option, which is a much costlier one than Coumadin, but superior for lung cancer. The other choices are Arixtra and Eliquis. I’ve not done the research to know the difference, but I’ve always been clear on the fact that Coumadin is not a good choice for lung cancer, that Lovenox or similar is always indicated.  I’m grateful for not having to argue with the internal medicine resident – I just couldn’t understand her resistance to alternatives and her obsession with using warfarin. And I’ve just heard that it takes months – MONTHS! – for pulmonary embolisms to resolve!! So I’m still in danger?!! I feel much better today, having more energy than I’ve had in a month, it seems.  Maybe a product of getting enough sleep, or of needing to care for a sick Hubby.  Hmmm.

I’m now off Tarceva (TK inhibitor/chemo pill), being in the (scary) wash-out period prior to treatment. I start the trial on Tuesday, 12/17 at UCLA in Santa Monica. Hubs won’t be with me, so it’s daunting.  The infusion is 30 minutes, after which I hope to stay the night at a friend’s house since I have to return for bloodwork late the following day.  I imagine I’ll have to stay the second night too, as I’ll once again be in rush hour traffic. I hear side effects don’t happen right away, which isn’t heartening, as he may still be away when they kick in. I may have to lean on people, which is rough, it being the holidays and all.

Speaking of holidays… all the days between Thanksgiving and Christmas seem to sifting away like sand. I was hoping for a different holiday season than the past few years, but it doesn’t appear to be so.  Looks like another non-decorated Christmas, mostly because of all the activity and the lack of manpower to put and take down decorations.  Oh well…