I feel wretched, but I don’t think I’m on my deathbed… Yet

Having a bad pain day.  Had one following my follow up appointment last Wednesday as well.  It’s my left hip/iliac.  Wow, it’s killing-me, off-the-scale pain.  I can only think of my good friend Tara, who had a fused hip all her life  then an unsuccessful hip replacement when she finally got good health insurance.  She was a schoolteacher – not exactly a sedentary job – but eventually had to stop.  I could never imagine or appreciate the level of pain that hip caused her, and now I feel I can relate.  My pain is off the charts, and if that was the only location it might be a tad more tolerable, but it’s more like a secondary location that’s now eclipsing the other severe pains.  It needs to be radiated.

Needless to say, I’ve taken the meds I have and they’re no longer enough.  I need a talk with the oncology pharmacists – they need to solve this pain problem.  Even as the meds try to knock me out, the pain is uncontrolled.  I’m on the verge of asking if my acupuncturist would do house calls.  And I’m starting a book given to me last year by Naomi’s parents – Breakthrough Pain, by Shinzen Young.  It’s on using meditation to divide and conquer pain.

I’m fighting to stay lucid.  I wish I could drink coffee, but it tears up the tummy right now.  Some sort of distraction would probably be best, I just don’t know what.  TV has lost its novelty, and lack of alertness and concentration makes it difficult to read or do anything requiring attention to detail.  Maybe a foot massage/reflexology tx would wake me up.  I’m willing to try anything at this point.  Espresso beans, maybe?

As regards the clinical trial team:  they’ve contacted me this week and I’ve not felt well enough to break through my lack of rapport with Dr. Goldman to communicate.  But I must, and maybe should even return for an “evaluation”, but since he told the internal med doc to get with my local oncologist to set up “some standard chemo regimen”, I’m assuming his mind is made up that I’m not going forward with the trial.  And I’m fairly certain he’ll never cop to my condition being caused by the study drug. With Hubs out of town, the logistics of getting to UCLA are complicated.  I can still drive, of course, but if I’m having a pain day, I’d rather not be hopped up on painkillers driving to LA.

Enter logistics queen Tara, who rightly points out I don’t have enough portable oxygen for more than a 4 hour trip to LA.  So that’s out.  she comes over, we have guacamole and chips, I email Dr. Goldman. He says get back on Tarceva, come in soon, I’m glad you don’t feel too sick.  I’ll fill him in later.  Meanwhile I break out into hives all over.  Is it the aveda massage oil with wintergreen, which has methyl salicylate, an aspirin-like compound? I’m supposed to be allergic to aspirin, but I’ve used the oil before, albeit on small areas.  My mom gave me a massage with it 2 nights in a row.  How likely could it be the store- bought eggplant Parmesan or chicken piccata? ( Not likely?)

all night I go from Benadryl-induced sleep to pain induced wakefulness back to Benadryl induced inability to meet scheduling obligation to get X-ray for pulmonology appointment.  I was trying to change that appointment to Friday, actually, when I go in for monthly Zometa tx (bone meds).  Im losing grip of my organizational skills.  Anyway, its a no go, I think have to go to a clinic 3 days in a row for something.  PITA.

So today was something of a lost day, spent texting and keeping symptoms at bay.  Hubs looks like he might be caught in another east coast weather system.  We are supposed to take delivery of a new bed on Thursday (goodbye fancy formal dining room), and were invited to a superbowl party on Sunday (prolly won’t make it but never know).  My mom has been here the past week and a half and is getting her groove back caregiving-wise… Poor thing.  I feel bad for her but I kind of think it’s good for her mentally.  She was starting to slip and I can’t help but think this unfortunate exercise is sharpening her mind.  I know trying to recover is doing something to mine… Not sure what, but thank heavens for intelligent friends who keep at me.  if I could just get the heart rate under control.

In a strange twist of fate, I came across an op-ed written by the neurosurgeon resident husband of my prior primary physician in Oakland.  I chose her for her outstanding credentials (dartmouth, Yale, UCSF resident of the year), but only saw her twice Before I moved and she quit to do a post-doc fellowship at Stanford, where her huBby was doing his neurosurgeon residency.  They are 36 now, and he has stage 4 lung cancer.  He’s probably an ALKie, but I’m not sure.  It just points to how one can be the most blessed person and be struck and leveled by this hateful disease, while the world’s criminals go about in perfect health, destroying the world, procreating, spreading more ugliness and pain.  Dr. Kalanithi might have the chance to see a breakthrough in his lifetime, and I hoped I would, but that may no longer be a realistic wish for me.  But you never know.

i hope tomorrow is a better day.  Sorry about the typos – I wrote this on an iPad. Will fix later.

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Another tool in in the arsenal of healing

I’ve never been much into games, but this I’m willing to do! Diversion and distraction can be a wonderful thing when one is ill. I wish I’d found this during the interminable days in the hospital!

What does The End look like?

First Friday of the new year. It’s been a balmy holiday season. A night wind is builds up. The house is redolent with the wonderful aroma of several comfort foods cooking at once. My sister came down for New Year’s and Mom has managed to break out of her prison with my brother. It’s nice for everyone involved, and Hubs thinks I should “pretend” to be sick more often, so they’ll come and cook a few days a month. Wouldn’t that be lovely, to just pretend I feel as badly as I do. I think I might be on the brink of death, but no one seems to see it that way. My sister just walked up to me and said, “You’re not doing too well are you? The kids (nephews & niece) need a babysitter tomorrow. I can keep cooking if they come here, otherwise I have to go to their house and not finish the cooking.” She told them her primary reason for coming was to help me out by cooking, but there’s never a time she’s come down when they haven’t asked her to babysit… and of course, they’re as oblivious and uncomprehending of my illness as most people. “Terminally ill” must be like a TV ailment or something.

Had Zometa (bone treatment) infusion today, fell asleep afterwards and missed acupuncture. Probably over-ambitious, two treatments in a day. Shortness of breath seems to be worsening. I can walk three steps before becoming completely winded. Makes no difference how slowly I walk or move – the smallest effort results in panting and gasping for air. My heart rate was 114, even after a few minutes of sitting. For comparison, there was a man in his 70’s at UCLA whose heart rate was 68. I hesitate to go the doctor yet again. I’ll get a chest X-ray, perhaps a new inhaler, another scolding from the trial doctor? The nurse practitioner I saw prior to receiving the second study dose had nothing to say, add, or otherwise illuminate the issue. Hubs had to wheel me from the treatment room to the car. I’ve had a few headaches today, and my shoulders are tense and sore. Blowing my nose yields blood clots mixed with mucus. Pericardial effusion? More pulmonary embolisms?

Am reading The Book Thief, which I bought 6 or 7 years ago. Not sure why I haven’t got round to reading it. It’s morbid and charming. I hear the movie was liked by critics but didn’t do well with audiences.

I am swirling in a vortex of ab, back, rib, hip, neck, and chest pain, some dizzy/lightheadedness, GI discomfort, distress by the loud talking and banging in the kitchen, even through headphones and music, stress from watching my Mom’s cognitive faculties slip… sorrow from knowing she feels even more alone in the world, because everyone is tied up with their own concerns – me with my spiraling illness and all that entails, a longterm house guest, and a morass of uncompleted responsibilities; my sister with being 450 miles away (out of sight, out of mind), Hubs with work/travel, his lately all-encompassing preoccupation with quads, and trying to teach a decade of life skills and turn his brother’s life around in as short a time as possible. In the end, it all falls on me and my incapacity to deal with all the situations at hand.

When I’m in so much pain – the usual state of affairs – my mind immediately shifts to thoughts of friends who have gone ahead. I go over what details they mention while waiting to pass on. Unfortunately, unless one is in the dying’s presence, asking how they feel, or the dying is dictating to a dedicated journaler, it’s pretty much impossible to get the their perspective – physical/emotional/intellectual/spiritual – as they go, in between periods of consciousness, of course. Caroline was the epitome of utilizing a dedicated journaler, and I am eternally grateful for the gift of sharing her journey towards (physical) death. This was made possible by having euthanasia as a choice, I think. It becomes more of a planned event, rather than an agonizing, Waiting-for-Godot death march. As personal, intimate, and vivid as the accounts of her final days are, it can only represent crumbs of everything she was experiencing. Her husband did a remarkable job, I think, of extrapolating the psychedelic world she swam in during that time.

I’ve been thinking and talking about death for the past 7.5 years. I don’t think I’ve felt as seriously about it for as long of a time as these past two months. It’a “This is for real” feeling. I could just asphyxiate in my sleep, or run out of breath on the driveway, or have some other unforeseen event.

Note: this post is incomplete but in light of recent events, I’ll put it up so the next posts don’t seem quite as abrupt…

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…

Shadows and Light

This year marks Joni Mitchell’s 70th birthday. She was an incredible force and influence in my life, and I’ve never stopped listening to her music, regardless of what trend I was caught up in.  This particular song seemed appropriate for the mess that was today.

Shadows: the ongoing harassment of my brother by his downstairs neighbor. I’m afraid it won’t end well. The guy threw rocks through his windows and kicked his security screen door enough to dent it and damage the door frame. My brother has been bullied by this guy for some time now, and the slumlord basically says it’ll take at least two months to evict him, though he’s in the process. I wasn’t convinced, and at any rate am not in great condition to figure out alternative arrangements in the meantime. The police never did arrive, which I find alarming. My brother is tired, and he’s weary of escalating retaliation.

Light: biopsy for clinical trial is scheduled for Monday. I have labs and other stuff to do in preparation, but I forgot to ask where they plan on gathering tissue. Because the lung is out. But nice to know they’re rolling along.

Me, I’m tired too. I’m looking for light but oftentimes, darkness gets the upper hand.

How do you spell relief?

Photo of the day: Max turning the corner.

Little Boy Max

Chasing pain at 4 a.m. is a drag. I’ve got to get this pain under control or learn to be an extreme morning person (Not!). What tends to happen is, breakthrough pain jars me awake, I pop a pill, I read or scroll through Pinterest (never underestimate the power of brainless distraction to alleviate misery), then go back to sleep when the pain subsides. Occasionally I’ll eat a bowl of cereal to counteract the nausea sure to follow the pain pill, but going downstairs is an enormous pain so I try to ignore the nausea. Pain like this is more than an inconvenience, it’s complex – a lifestyle change, even. I won’t bore you with details – just the hope you never suffer it. This really throws into question just how long it will take to enroll in the clinical trial I’ve signed consent forms for. The pain is alarming and I can’t believe bad things aren’t happening to cause it.

Better step up efforts to find an acupuncturist! Making plans has always been difficult. Hubs has a trade show in Nashville in December. The plan is to join him, but I wonder where – or if – I’ll be then. Not being dramatic – I see people who wait forever to get onto trials then die a few weeks later. I don’t want to be that person and it begs the question – Do I really trust the oncologist who says i’ll be okay for a month ? Maybe I’m being a big baby but I can’t believe this kind of pain is business as usual.

<<8)*********Edit********

Lately I’ve had a spate of “follows” unmatched even by traffic from Vox days. Not sure if this has anything to do with NaBloPoMo, but unlike years past, I find it harder to post daily. It feels like a lot of whining about pain, cancer, death, what I can no longer do, etc., ad nauseam. I have a zillion interests, yet find myself mostly internalizing, realizing that most of what I share here isn’t what I want most to write about. I have a great deal to say, I just question if blogging is the right outlet for such thoughts. The beauty of blogging, though, is just that: the blogs that move me are the ones which expose one’s inner life, because we’re all balls of vulnerability, whether or not we know it. That’s the golden moment – the period of innocence preceding life lessons. If there was anything I’ve loved more than great memories, it would be the innocence and spontaneity that led to carpe diem. How I miss those days…

This morning’s pain was eased by morphine and this blog.  Keep on writing, everyone!

 

Nail biting

I toss and turn all night, mind racing with things I have to do. At 2, 3, 4 am I inevitably wake to take painkillers, then hang out with iPad while waiting for the meds to kick in. Then the racing begins.

I had good intentions today, of doing all sorts of admin stuff… spreadsheets, lists, etc. Yet, I just spent the past hour changing the header on this blog, and really not much else.  Earlier I pruned things. Perhaps not the best use of one’s time, but soothing.

CT scan on 10/11 has me worried about the pinching pain in my side. I think the beast is in my liver. Which is just as scary as my brain, where for now, according to the brain MRI of 10/8, it isn’t. But the liver – well, some people live with it the same as brain mets, and some just get taken quickly, as Kirsty. Sometimes it’s just the cancer, as in Dad’s case.

UCLA onc (Dr. Goldman) had me hoping I’d hear from him this past week as regards a timeline for enrolling in the Clovis trial. I emailed and called him, and when I actually reached him, he said he would call me later but wasn’t able to talk now. He said he’d know in a week if I could enroll, and this week will be going on two. Is he jerking me around?  Do I do a round of chemo and then proceed with the anti-PDL1 trial?  Is it just as well that I skip Clovis, since AZD9291 is on the horizon and Clovis will undoubtedly disqualify me for that trial? Hmmm.  (A bit of rash has been reported with that agent but really quick responses in comparison to Clovis)

I just don’t know what to do. I think it’s chemo this week, unless Goldman calls. Even then, I think the shit is in my liver.

I think I’m a bit depressed lately. I don’t think I can get my Mom squared away.  Her situation is complex and it appears to me she plans on staying in her house, no matter how impractical, for the rest of her days. Our situation also doesn’t seem stabilized, with Hubs talking about various locations we might move to.  And it takes all my energy trying to receive appropriate medical care from SoCal Kaiser.  One has to squeeze blood from a rock and jump through a million hoops to get anything moving.

November is Lung Cancer Awareness Month. It’s the month Carolyn died… I pretty much think of everybody I’ve lost, all the time.

If I could just get a grip on my treatment situation… now that I’ve pissed my soon-to-be-ex-oncologist off and am unsure just how far my “new” oncologist will take me.  Sigh.