I’ve been somewhat avoiding this entry, as ridiculous as it may seem, simply because I’m scared, quite honestly. Scared about seeing what I should, or want, or need to put down here. There’s a stark reality to a word on a page. Something CREATED that you can’t just stuff back into a box.
This is a travelogue, if you will. Which makes me a tour guide of … myself? I’ve always found that an interesting viewpoint, whether as a reporter or editor or blogger. If you’re reading this you’re on a journey with me, and perhaps similar to the anticipation we all get wondering if the traffic you’re stuck in was born just over the hill in smashed cars and blood on the pavement, I have to think in the back of someone’s head reading this blog there’s a knowledge of what we are going to find over the hill.
Here’s the difference between you and I, however. You read these words, their order and meaning and message devised in my head and placed here as best I can. Perhaps you get hope from them (that would be a feat), or more likely some information you didn’t have about Myeloma. Maybe you know me and this is how you stay updated. For some I know there’s an empowerment in reading and interacting with others sharing their fate, which is why I make sure to answer (I may miss 1-2, sorry) every comment personally.
But for me this thing is something totally different. It’s truth. It’s a love letter to someone you’ll probably never meet. It’s comprised of words once spoken outloud, given birth, that become unavoidable, and once created I can’t shy away from it. Just the opposite, I re-read these entries ad nauseum. If they make me tear up I just keep doing it to inure myself, to explore, to learn, to understand me through this process. To remember — it’s weird going back two years and reading.
And hey, side effect to chemobrain, I have such a hard time recollecting certain things now it’s like reading a whole new blog, laugh. I should start re-reading my favorite authors come to think of it. Anyways …
Long way of saying why I haven’t updated in the last few days. That experience can be so taxing that the anticipation of it can be too much sometimes, especially when my number one method of coping is to compartmentalize and seal until I feel it’s safe to open the vault door and peek inside. These entries are often the emotional equivalent of blowing open all the cell doors in a Brazilian prison and seeing what happens.
Don’t ever Google “Brazilian prison riot” by the way. That’s one of those “what’s been seen can never be unseen” parts of the Internet.
Wednesday morning I met with Megan, the nurse practitioner on Dr. Matous’ team (and also with another member of their team sitting in who works with Sonja, the team’s nurse navigator — each doctor at CBCI has their own group of folks). Megan actually is the reason I’m at CBCI — she’s a friend of a friend’s sister who related to her some unsatisfactory experiences I had had with my former local oncologist and got me in to see Dr. Matous. Not only is she as sharp as they come on Myeloma but there’s also an underlying level of tangible “caring” that I rarely see in medical professionals. I consider myself lucky to have met her, quite honestly.
So we have a 45 minute meeting to discuss some things which I’ll save you the narration of. Here’s some “highlights,” although that’s certainly an odd term for it:
- We are definitely in the danger zone. Queue Archer pestering Lana.
- We are going to continue with the Dara/Rev treatment for a few more weeks (4?) to get some more data and because it’s seemingly very effective on two of the three metrics you watch with my form of Myeloma (IgG, M-Spike) even if the Kappa is going the wrong way.
- We’ll be doing weekly appointments with a doctor and weekly Myeloma tests now (monthly before).
- PET Scan time. Only had one before so not entirely sure what this tells us, but that was the plan BEFORE I told her about some of the pain I’ve had bone-wise lately (skull, lower back, etc.) and once related became even more urgently needed.
- The next step for me if this is not sustainable is probably going to be something called PACE (we’ll discuss that in a minute).
- After Dara, or PACE, I cannot be off chemotherapy. Every time I have my numbers go to Hell so fast you’d think they had a VIP invite.
- The step after that *may* be some sort of CAR T trial. CBCI is most likely going to have one but given the previous bullet point I may need to travel for one to get the timing right — again I cannot be off chemo given what we’ve seen so far.
- There’s no good way to prop up hemoglobin counts like you can with white blood cell counts, apparently. i.e., Neulasta, IViG, etc. There used to be and it was a standard of care, but due to heart issues it’s use was severely restricted.
- An autologous stem cell transplant (someone else’s stem cells) may be on the plate for the future. Risky and a huge time commitment among other things. Didn’t even know they did those for Myeloma.
- I managed to make not one but two medical professionals tear up with one comment. Basically that I just needed 13 more years, even if it was slogging through chemotherapy 24/7 to get there (we had been talking about living on chemo for the rest of your life versus not even a maintenance regimen). From knowing me Megan knew pretty much immediately that that was when my daughter turns 18 and explained to the other nurse in the room, who has a young child like Megan and I both do.
- One of the reasons my cancer may be so frustrating to deal with chemo-wise is perhaps there are not one but TWO clones at work. That could explain the weird way the Kappa is not marching in step with the M-Spike and IgG. First time I had ever heard that was even a possibility.
As I remember it those are the main points we hit. Couple things to dig into from that list. First, Megan was telling me how she had talked to Dr. Matous the previous evening and he knew my numbers off of the top of his head. She let me know that’s not the norm and that he cares about me. That may seem like a very small thing in a very scary list of things, but it meant more to me than anything else said yesterday. I have a hard time buying that many medical professionals even read this but man, you want a patient to believe in you? That’s how it’s done. A little caring moves mountains. You want someone fighting for you in this, not doing their day job, capiche?
Secondly, PACE. I checked with a friend with Myeloma doing significantly better than I am and that was news to her as well. I also don’t recall that one off the list in any doctor’s office of potential treatments. I’m reasonably sure, since I’m somewhat well-read in Myeloma, that there’s just not a lot of talk out there on this one and doctors don’t even mention it given why it’s used. The key word I kept seeing over and over again is “salvage.” It’s a salvage chemotherapy, so in a way a hail Mary pass. At least that’s how this feels. We’re not calmly sitting around pondering quality of life issues over IV versus oral chemos and what’s hot now, we’re calling the National Guard and getting ready to light up Berkeley like the Branch Davidian compound in Waco. It sounds like there’s some variance in the exact cocktail used with this (Velcade or Thalidomide, for example).
- P = Cisplatin or Platinol. Mmmm, 1978. Cisplatin (actually discovered in 1845) is licensed for medical use. 1978: the Sex Pistols play their last show, the Blues Brothers perform their first (on SNL), Van Halen and the Dead Kennedy’s debut albums, and most importantly Iron Maiden hires Paul as their lead singer and records a 4-song demo including Prowler. Best band ever. EVAH.
- A = Adriamycin or doxorubicin. What year did Nixon resign, Cher file for divorce from Sonny, Neil Peart join Rush and the Ramones perform for the first time at CBGB’s? 1974. Those two drugs are the same, as far as I can tell; Adriamycin was a trade name for doxorubicin.
- C = Cyclophosphamide. Set the Wayback Machine for 1959, Peabody. Jimmy Hendrix buys his first electric guitar, my dad’s favorite Buddy Holly goes down in a plane crash in Iowa along with the Big Bopper and Richie Valens, and Cyclophosphamide is approved for use. This one I’ve had before when I first was diagnosed as part of the “CyBorD” triplet (Cyclophosphamide, Velcade (Bortezemib) and that wonderful (not really) Dex.
- E = Etoposide. Welcome back to ’83, when Thriller debuts at #1 on the charts, Mick Jones is kicked out of the Clash, the members of KISS take off the makeup, the first Phish show happens and Etoposide hits the market.
The “DT” is Dex and Thalidomide (predecessor to Revlimid/Pomalyst) but it seems like there are variations on this theme (using Velcade instead, etc.). Only recognize a few of those names? Yeah me too. I wasn’t sure what Megan meant when she said it’s an old-school chemotherapy. More like 800 of them. At once. 96-hour infusion, only can do this once or twice due to the severity.
In looking at that list maybe I should show up with a giant afro and bellbottoms humming some BeeGees. CB? Still got that pink afro wig?
How’d we get here seemingly out of nowhere?
I know the answer, a combination of semi-effective treatments and a few ill-timed but necessary chemotherapy holidays. I’m still suffering from the whiplash, however. I went from the, for lack of a better analogy, “softcore” chemotherapies to the “XXX scar-you-for-life and terrify the kids while it kicks your dog” chemo with little to no warning. There are so many questions this is raising and emotions churning and frothing like some stormy seas out of a novel where people say “yarr” and the great white whale appears on the horizon that I don’t even know which way is up anymore. It’s given birth to a few feelings, however, that stand out:
Yarr. I just wanted to say that again since it’s a joke between my daughter and I.
Cracks me up every time. Sorry, your list:
- I’ve never “feared” my cancer. That’s an odd realization. I thought I did, for sure. Now I fucking do. So if someone was just trying to make a point with this to not take cancer lightly, I get it. Seriously. No I will not start going to church, please stop asking.
- Taking that a step further, I’ve never felt the grasp of death before. I think I know more about impending doom than non-terminal peoples after four years of Myeloma, but there’s a big difference between having a concept in your head with some nebulous future date (“eventually this will probably cause my death”) and what I feel now. It’s gone from 2-D to 3-D, if that makes sense? I feel like we’re in the “get the paperwork in order” phase of things and I can’t escape that feeling. Not that my thoughts on it have changed at all (only really care due to Ariana and her future, yada yada yada), but I thought I’d have a bit more time to get there. That feeling is now gone.
- There’s a very disappointing jealousy I’ve hid from everyone for a long time. I get the feeling all of us doomed do this even though we don’t talk about it, because it makes you feel shitty. It’s being jealous of survivors, those for whom all of the chemicals and years worked. I hate that because it makes me feel petty and selfish, which is logical. It’s just so hard reading about how someone survived on Revlimid for 20 years or is now in remission or what have you when you aren’t. But it’s a full disclosure sort of blog, so sorry for admitting what most of us feel but won’t talk about.
So that’s where we’re at. Well I’m at; hopefully you, my friend, are not here with me except as an observant whisper in the dark. I won’t be dropping dead tomorrow, I doubt, but in four years we’ve torched quite a bit of the new therapies and standards and we’re worse off than when we started. What’s left looks and feels pretty grim to me right now.
Sure there’s hope. I’m still fighting along with the best medical team on the planet as far as I’m concerned. I’m taking the drugs, making all of the appointments — ask around and folks will tell you those are the danger signs of giving up (no shows, not taking the drugs, etc.).
I figured something else out today. My father, upon hearing my diagnosis four years ago, has mentioned a few times since that that was the only time he’s seen me scared.
I realized today I’ve just learned to hide it better since then.
PS: You know your cancer’s rare when the spellcheck keeps correcting it to “Melanoma.”
Watch, I’ll have that now too and we’ll all go “how ironic.” Knock on wood.
Last thing that I just recalled. Don’t read more into this than is necessary but with all these thoughts of death and the timeline feeling like it’s shifted I came up with what I want on my tombstone. “End of Line.” Sure, put some family stuff above that, but that needs to be on there.
Tron dork, what can I say.