You know when you are at your desk Monday morning chasing Percocets with a soy latte that it was either a really good, or really bad, weekend.
Friday my white blood cell and other counts were bad enough that Dr. Matous and his nurse practitioner agreed that if we’re starting a new Revlimid cycle there’s going to be a problem at my numbers and the current dosage. As a result they decided to change my Revlimid to 15mg every other day (from 15mg daily) and got me approval for a shot of Amgen’s Neulasta, a $7,000 drug that stimulates the body into making more white blood cells. The last time I had this, or something similar, was when they were harvesting my stem cells for transplant 3 years ago, although I think then I had Neupogen. As I recall, the primary difference as I understand it is Neulasta lastas longer.
When a typo becomes a bad joke on the next Geraldo.
Minor problem arises … the insurance companies apparently won’t approve a Neulasta shot within 24 hours of chemotherapy. Solution? Either drive back to CBCI on Saturday or wear an injector that, 27 hours later, will automatically give me the shot. Not wanting to drive all the way downtown AGAIN I opted for the injector being stuck to the back of my arm. They look, and are about the size of, a container of dental floss:
When they put the injector on you it pokes through the skin and then starts blinking green. 27ish hours later it beeps and then injects you. Pretty wild stuff. Kind of nerve-wracking too, though … I mean it’s $7,000 of medicine just taped to you on the hope it works right. What do you do if it screws up, call the insurance company on Monday for another one? Felt kind of anxious walking around with it, as well as anxious that it’d start and I’d watch $7,000 of Neulasta run down my arm instead of into it because I had bumped it once or twice.
In the midst of all of this going on, however, I forgot how painful this drug can be.
It’s hard to describe what these drugs can make you feel like. I had severe bone pain in my back, especially lower back, hips and legs, as well as a shooting pain in my skull. I’m assuming this is somewhat similar to what the bone pain of Myeloma is like when it gets to that point? Either way it SUUUUUUUUUUCKS. I don’t even have a comparison I can make to help you understand this, but it’s easily the worst pain I’ve ever had in those locations. When I had the Neupogen during my stem cell harvest I was just laying there and for all I know they even gave me painkillers. Walking around in your normal life though? Yeesh.
They tell you that for whatever reason Claritin helps with that pain, but if it did I didn’t notice. I slept about 11 hours Saturday night and then the pain started. By Sunday night I was in rough shape and started raiding the household stash o’ Percocets (which worked really well, btw).
So here we are, low on sleep and high on opioids.
Which incidentally is a great country music song title.
Nothing really pithy to get into today. Days of pain generally force a recognition of my situation that, as I’ve talked about before here, I mentally deal with normally by distracting myself. I was so goddamn tired all weekend, however, that I didn’t even have the strength to do that. My wife, however, was blown away by how helpful I was to her on Saturday, so that’s a good thing — she had a gall stone attack Friday night and was in the ER from about 1 am to 12 pm Saturday and in bad shape pain-wise. My continuing efforts to make up for the last several years of DexRich are in fact working (at least until the next major fail), which makes me happy, and having had my gall bladder already removed for exactly what happened to her this weekend I was able to offer some solid advice and doctor referrals.
Ahh, that was one thing I wanted to get into today. So Fridayish I did something I rarely do, which is interact on Twitter with some of the more well-known names in Myeloma. I appreciate that it’s useful but I seriously hate Twitter. As a writer, even a hack, it’s depressing how much Twitter just eats the beauty of language and the art of phrasing things and turns adults into people who substitute “u” for “you” like a 16-year-old texting someone just to make a character limit. Regardless, I was, respectfully, calling out someone over some information on Dex on a slide from some Myeloma-y conference. In seeing the slide I realized that it was just the usual boilerplate stuff I see and once again showed no real understanding of what patients go through, at least to me. Having had my life and who I actually am pretty much rewritten by Dex it’s a sore subject with me.
Again, zero disrespect intended towards anyone involved but look at the pic link in the tweet I’m replying to and read the columns on that Powerpoint slide. Now read this, a quote from drugs.com (my 5 seconds of Google research):
The most commonly occurring side effects have included alteration in glucose tolerance, behavioral and mood changes, increased appetite, and weight gain; the incidence generally correlates with dosage, timing of administration, and duration of treatment … A wide range of psychiatric reactions including affective disorders (e.g., irritable, euphoric, depressed, labile mood, and suicidal ideation) psychotic reactions (e.g., mania, delusions, hallucinations, aggravation of schizophrenia), behavioral disturbances, irritability, anxiety, sleep disturbances and cognitive dysfunction (e.g., confusion, amnesia) have been reported. These reactions have been reported in adults and children. In adults, the occurrence of severe reactions has been estimated to be about 5% to 6%.[Ref]
Frequency not reported: Depression, affective disorders, anxiety, emotional instability, euphoria, insomnia, mood swings, personality changes, psychic disorders, confusional states, anxiety, abnormal behavior, irritability, aggravated schizophrenia …
So to preface what I’m about to say, I know NOTHING compared to whoever @IMFnurseMyeloma is. She’s a Mayo Clinic nurse who deals with MM all the time, I’m just a member of the MM doomed tribe. That being said, the “Managing Steroid Side Effects” of her slide is side-effect management for the stuff to solve side effects from pretty much every drug I’ve ever taken — take with food, take some stomach stuff if you have “discomfort.”
I’d also note that in the drugs.com article they list a lot of what I went through, and others I’ve talked to, as only happening in 5% of patients. Since they’ve happened in 100% of the people I’ve talked to I’d argue that statistic.
What I won’t argue is a simple bullet point addition to that list — TALK TO SOMEONE ABOUT THESE SIDE EFFECTS THE MINUTE YOU ARE PRESCRIBED THIS DRUG. You may never experience the emotional and psychiatric side-effects but I, and others, have been broken by them. Be informed, OK? Suicidal thoughts, total lack of sleep, personality changes, irritability, emotional instability, even weight gain and the psychiatric damage that can cause — those are serious things, folks. Those are what I call “suck-starting the shotgun in the basement” side effects. That’s real, and I’ve experienced it and not even realized at the time that some of these bizarre thoughts and reactions were being caused by one of the drugs I was taking and not my situation (which is hard to separate). And since a lot of times you don’t see the onset of these (i.e., gradual changes), you may not even realize it.
For those without this experience, try to imagine you are diagnosed with cancer. While survival rates, thankfully, seem to be up across the board for most types of cancer, that’s still probably the most serious, and depressing, news you’ll ever get. In a 2012 study I found online, the risk of suicide spikes in the weeks immediately following a cancer diagnosis by 13 times in the first week and 5 times twelve weeks later. It’s still three times as likely a year later. Also thanks to the deplorable state of insurance and healthcare combined with drug pricing issues, add all of the financial issues that cancer victims have to deal with. Then to ice this cake, add a drug to it that’s going to make you retain water so your weight goes up (another giant source of depression and one that can become a brutal circle). You are experiencing the entire spectrum of negative thinking due to your diagnosis and how serious life just became, and now you’re thrown onto the rollercoaster of Dex.
And that’s not a focus, much less even a discussion point on the bullet list?
I can say for myself that the entire reason I began therapy was due to having suicidal thoughts over my diagnosis. Which a lot of us do, honestly — who wants to live in pain / fear for their life? I spent a decent amount of time pondering whether, since children have a tendency to “reset” their memories around age five, if it would be better to step out of the picture and let my life insurance take over as daddy. Ultimately she’s the reason I didn’t pursue this line of reasoning and instead sought out professional help.
My point is simply that a little talking to your provider about how to spot and deal with the mental component is important — a lot more than “take with food,” which while I’m certainly not a doctor I can say with a lot of confidence will not save your marriage when you have become such a bitter, irritable jackass that it and every other relationship you are having is falling apart. Again, no disrespect to whoever created this slide, it just reads like everything else I see in cancer, which is medical personnel downplaying the serious aspects of what we’re dealing with.
Also, given that half of my Twitter feed is articles about the importance of patient-provider communication and patients’ input on treatment, I wonder sometimes if it’s stuff like this that helps cause that divide. Why isn’t talking with a mental health professional part of the initial diagnosis process? Maybe it is in places, but personally I think it should be across the board — the absence makes you feel like that part is ignored or not a “real” problem … but I’m here to tell you it’s as real as it gets.
And to cop lines from the UFC advertising, apparently.
Also if you are a provider, think about the impact having someone ready to talk to on diagnosis would have. Here’s a patient about to get the worst news of their life (or close to it), and, “um, see ya’ and best of luck with that! We’ll start up poisoning you on Thursday.” Now imagine how much more comforting if someone was there as part of an active team (not just if you find out they exist) ready to explain how the diagnosis, and some of the medications, may affect you and what to look out for and to check in at set intervals or as needed.
To me that’s just a smart choice that costs nothing. How many times has an on-staff social worker / therapist / etc. been sitting in their office doing nothing while 2 doors away someone got the “you have cancer” spiel?
Seeking mental and emotional healthcare, especially prophylactically, is not a sign of weakness, emasculating, something to be embarrassed by, etc. It’s not an admission of being crazy or even that you have a problem — it’s just smart planning. Please don’t ignore this aspect of treatment. Every oncology office I’ve been to has some sort of help along these lines, usually free (your mileage may vary of course), specifically to deal with this stuff, although they don’t always let you know about it.
Anywho, enough of me playing Surgeon General today. Not even sure who ours is right now, come to think of it.
With Trump in office it’s probably Doc McStuffins.