Posted 7/15/2016 4:34 PM (GMT 0)
CHAPTER FIVE: IN CASE OF FIRE, BREAK GLASS
Three tales of overreaction in body, super-ego, and id
A RASH OF WARNING
Life is cyclic when on taxotere therapy. Every 21 days, you get that dose of chemo that puts you into a recovery phase as your body responds to the collateral damages imposed by the fight against cancer cells. I have described my response to my first dose in detail in the "Taxotere Side Effects" thread of the forum. As Sonny3 and others have presented, you can be pretty much back to normal by week 3 post-infusion, planning all sorts of rejuvenating activities to remind you how good you feel in the moment. I spent much of that 3rd week with family in Texas, sharing moments with my mother and sisters, playing lots of music with my brother-in-law, walking 4 miles a day in a semi-rural countryside in the cooler Texas morning. Back home for the weekend and a fine open mic session at a microbrewery where my rendition of Warren Zevon's "Werewolves of London" met with howling success. Life is awesome, feelin' real good, not cancer-ridden at all, ready for Round 2.
Ding!
Tuesday: blood work, assessment, then vaccine #3. Labs are great, my RBC are down a bit, my WBC are up a bit, everything is normal, AND my PSA is down to 0.45 (was 0.92 only 3 weeks ago). During initial assessment with the fellow, I point out the persistent non-itching rash on my arms and upper chest that started up about 3 days after the first infusion. The way it works in clinical trial, the fellow assesses and then presents to the team while you wait in the exam room. Then the team sees you, including the program director and sometimes, like now, a PharmD. The docs felt the skin rash was an indicator of a hypersensitivity reaction, something not unusual in taxotere therapy. Going forward, we will bump my pre-chemo steroid infusion of decadron from 12 mg to 20 mg. Vax#3 given, home to hotel.
Wednesday (at least 20 hrs post vax): IV placed, 20 mg decadron over half hour, then taxotere started at 250 ml/hr (1 hr infusion).
about 1 minute into infusion, I start feeling warmth and tightness in the epigastric area, then of a sudden there are stars dancing in my vision as it grays out, and I feel a profound sense of physiological crash occurring. I shout "Help! I'm having a reaction". Being a former ICU nurse and a current teacher of pathophysiology, intellectually I recognize the potential for severe and lasting physical compromise from this type of over reaction in the body. While having a sense of circling the drain, apparently the only verbal response I could muster was a series of "ooh ****, ooh ****, ooh ****..." I wasn't yelling- it was more like a "woe is me" statement. I was very scared.
The nurse turned off the infusion, which quickly pulled me away from the drain and I was able to converse normally, but I was shaky and shivery. I was given 50 mg Benadryl IV (antihistamine) to counter the hypersensitivity I had developed from the first exposure to taxotere. (New edit) Apparently it is not uncommon for some of us to react on first or second infusion to taxotere in a manner similar to Type I hypersensitivity, BUT without mediation of IgE-class antibodies. This is part of our immune response in action. The skin rash from first infusion suggested I was reacting to the taxotere in just such a way. Type I hypersensitivity triggers the release of histamine from mast cells, causing inflammation. Since the introduction of taxotere was by vein, it was flowing throughout my body and could trigger a massive systemic inflammation response if not terminated and countered quickly. Since the foundation of the inflammation response is rapid movement of vascular fluid into tissues, a systemic inflammation can quickly drop blood pressure below levels needed to oxygenate essential organs. I know all of this without thinking about it, hence my only verbal response as I was spiraling down the drain was "ooh ****" rather than something more literate like "is that all there is?" or "so long and thanks for all the fish".
I really like the medical attention I get at NIH. 3-4 nurses, two fellows, a PharmD, and the program director all spent time with me over the next hour. As I said, this type of reaction is not unexpected, so there is a protocol to proceed forward. As an antihistamine, the Benadryl I was given will block the receptors where histamine could bind, preventing the inflammation response. The Taxotere was started up again, but at a very slow rate and ramped up to a maximum of 125 ml/hr. But the current bag of chemo would expire before the and of administration, so they took it down and pharmacy had to make a new bag (read 2 hr delay). Obviously I would miss my plane and have to stay another night.
So you sit in the infusion chair and try to rearrange your life for the next day or so on a smartphone. The NIH travel agency makes it seamless for flight arrangements; of course you need to have your shuttle schedule handy so you know when you can get to the airport. Hotel you must manage on your own, but you can get an NIH rate of $149 at the American Inn in Bethesda (about as cheap as I have found for nearby hotels).
The infusion was completed without complication, I was feeling great, strapped on my backpack and headed out into the world at 8PM. Stopped at the store for a 2 liter bottle of water and 1 liter of gatorade and some junk food (not gonna sleep much tonight due to steroids...), got to inn, up in AM, shuttle to NIH, then shuttle to BWI, and then....
THE TROLL AT THE GATE
I am now about 20 hrs post chemo infusion and feeling the chemo fog. I can always tell fog when I try to do mental math or even compare data in tabular format (like shuttle schedules!)- and just that sense of a bit of disconnection with the external environment. Now Brother Cyclone would be proud of me, I have been hydrating at the rate of about 300-400 ml per hour by my calculation. I am voiding pretty much on the hour and I know from my last trip that I had pain and nausea about 24 hrs post infusion. I figured it would be good to claim disability and get priority boarding on Southwest again. I am a little sensitive about this as I presented in my last post on this thread.
Standing there, a little foggy, watching people board the plane that I did not know were re-boarding as they came in on the plane from Albany, I stepped up to be told boarding had not started. OK. across from me is the guy who obviously has the A1 position in boarding- and he sez "they let anybody have priority these days". Now in my chemo fog, I guess I read the sign as "in case of fire, throw gas" and I immediately blurt "No. You gotta have cancer and chemo therapy treatment." It felt like an insufficient parry, to which he responded "I've been through that. It's not so bad. I never used it to board a plane". At which point the gate manager tried to de-escalate, saying "we're all still friends, right?". I just said "no" and turned away, but inside I am very tight emotionally.
I board and get my aisle seat close to the restroom, and sit there and stew about what I should have said at various points in the interaction. Instead of "no" I should have said "yeah well you are still alive, I am just buying time" or maybe I should have said at first "No. You gotta have terminal cancer and recent chemotherapy treatment" or maybe I should have been technical and rude at the same time:"I have terminal cancer and was just infused with chemo yesterday and anticipate I may get ill on this flight. I am superhydrating to flush out chemo-induced toxins to minimize side effects and felt that climbing around fellow travelers every hour is not something anybody should have to put up with. And you have no idea of the demons I wrestle with, you cretinous *******."
At which point I would have been prevented from boarding of course, but that felt like my most satisfying "should have said". But the boarding is about done, and I am sitting there, fists clenched, eyes clenched, trying to hold back the emotional dam that wants to burst as the reasons I am on this journey bombard my defenses and my fears and weakness become ascendant. The beast has left the cellar and roams freely about the house.
Slowly I coax him back to the cellar and shut the door. I can open my eyes now, but I am constantly on watch at the cellar door. The flight was more stressful than it had to be. But I did not get sick, as I had premedicated with prilosec and zofran.
I finally get home, change clothes, sit down and find peace with my guitar, looking forward to seeing my wife when she gets off work. I am where I need and want to be. All is well.
LOOK MA, NO HANDS!
I am not sick. That is a feeling I have at my primitive core, as my id grasps at any sign of hope, overreacts and amplifies the absence of pain and my active engagement in standard and new therapies into a "durable and lasting remission" fantasy. I cannot help this, although my super-ego, always cognizant of the number "10", keeps trying to remind the id not to be too happy. Really, when you sign a paper for your medonc that states you recognize that all treatment is palliative and cure is not an option, where do you go with that. Apparently not to the id.
It is a good place to be for now, but this situation is so young (less than three months since definitive diagnosis) and the trips to NIH help me to feel like I am aggressive in fighting the disease. I fear I will feel a sense of loss when they stop, and I will have to get on with life as it really is. For example, one of my hobbies has been gaming with historical miniatures, which I paint myself, and I have a couple thousand 25mm Napoleonic figures which I need to start selling off (could net $10K here- I am a pretty good painter), but the act of doing that is not one of hope for the future. I have been putting that off for now, mostly to ride this wave of positive action of late. I think the first time I get a PSA bump, it will be easier to begin that process.
Anyway, I am back to home, hydrating like heck, really feeling better right now than at the same time post 1st chemo, planning a 1 week camping vacation in Utah starting the last week before next cycle. All is well and here's to fightin'.
rf