Thanks to input from a friend I decided to move my blog from Blogger to WordPress, which has been pretty easy. Not so easy, however, has been the emotional impact of having to go back and read the whole thing to tag everything right, get the formatting fixed, etc.
In doing so, however, I realized there is a lot of information missing, gaps in the story that I should probably fix. I know I don’t have all of the information some want readily available — I think I’m a bad blood cancer patient, honestly. Everyone I talk to leads with their numbers like they’re introducing themselves as Patrick McGoohan’s Number 6 from ‘The Prisoner’ … “I am M-Spike 1.9 IgG 2,400,” if you will. Me, I barely pay attention. What difference does it make? I know the trends. I have an incurable but treatable cancer, which sounds good except when you’ve already blown through several treatments in less than that many years you start wondering just how “treatable” it is. Plus if I knew my #’s better I’d be a walking ball of anxiety.
I often ponder putting together an Excel spreadsheet tracking it all, the typical “hi, I work in finance” answer to the world’s problems. Much like a surfer waiting for a wave to ride, as anyone who partakes can tell you I’ve been waiting for a good solid Dexamethasone blast o’ energy to do that. Have a box with all of the lab results and paperwork just waiting for the chemical motivation to kick in.
So of course I just got taken off of Dex.
Someday, Excel, SOMEDAY.
Dex, for those unaware, is the steroid they add to EVERY (seemingly) chemo treatment I’ve seen so far for multiple myeloma. My understanding is it increases the efficacy of the chemo drugs, allowing for a lower chemo drug dosage? Either way with very few exceptions I’ve been on this crap for almost four years now, and sometimes if you get the timing down you can be super productive. I cannot tell you how many times I’ve re-organized our pantries, the garage, the spare closets … great drug if you don’t mind the weight gain and ‘roid rage that accompanies it.
Anyhow, we’ve entered rambling town, so let’s rein it back in a bit. Like I was saying, when reading back through things I found a lot of gaps and events that don’t make sense unless you know a bit more about what was happening at the time. While I don’t write here to tell a clean, linear story, I bow to the logic that one needs to be told at least to a certain degree. So a few things that I think will help color in the gaps:
- Diagnosed in mid-2013 when some GI-related blood tests for recurrent diverticulitis showed red flags. Went to RMCC at Rose for further testing, second opinion at the Mayo Clinic in Rochester, MN with Dr. Arleigh McCurdy. Decide to have MC “take over” my care with the local oncologist, Dr. Alan Feiner, at RMCC in charge of administrating everything locally.
- Began CyBorD chemotherapy, consisting of Cytoxin, Velcade and Dexamethasone. Velcade was done at RMCC at Sky Ridge, the closest RMCC to my office / home.
- Dr. McCurdy quit the MC for husband’s job but recommended her colleague, Dr. Joe Mikhael, at the Arizona Mayo Clinic. Went down to meet with him, have him take charge of my care, and plan for a stem cell transplant.
- Began therapy locally, and eventually anti-depressants.
- Temporarily move to Arizona in February 2014 for autologous stem cell transplant (“SCT”) at the Mayo Clinic (Day Zero = 2/26/2014, some consider that their new birthday for some reason).
- Back to Colorado in late March 2014 (30-day post transplant mark).
- Summer 2014, 100-day SCT results don’t indicate remission, Dr. Mikhael begins Revlimid with Dexamethasone as a treatment.
- September 2014, lower Revlimid dosage (too hard on my blood cell counts) from 25 mg to 15 mg.
- January 2015, switch local oncologist from Dr. Feiner at RMCC to Dr. Matous at CBCI.
- February 2015, Dr. Matous adds Ninlaro (oral version of Velcade) to Revlimid and Dex therapy.
- Summer-ish 2015, Dr. Matous ends Ninlaro, adds Biaxin for a few months (BiRD).
- Tried to wean off of Lexapro (the way you are supposed to). Bad idea, turns out I was relying on it a lot more than I thought!
- May 2016, start clinical trial for Pomalyst, Dex and ACY-241.
- Mid-2016ish begin intravenous immunoglobulin (IVIg) since I’m getting sick (pneumonia) on almost a monthly basis.
- October / November 2016, decide to stop going to Mayo Clinic.
So that should clear up a few blanks, anyhow. Again it would probably be more helpful if I had all the #’s handy to show my stats at some of those bullet points, sorry. I also feel like there’s a lot that happened in 2015 as well that I’m forgetting but I wrote nothing down — let’s just call 2015 a rough year and move along. So mix in 4 hospitalizations for pneumonia in 2016, 3-4 diverticulitis attacks and here we are ready for a stomach surgery and off any chemotherapy (and out of that clinical trial). That should bring things up to date, but thanks to chemobrain I may add to this later.
Oh yeah, the Mayo Clinic decision at the end there? Given that I was in the clinical trial this year and Dr. Matous and Mikhael were pretty much eye-to-eye on everything to begin with, I made the call to can the MC trips after having to cancel two at the end of the year due to illness. I love Dr. Mikhael but it became kind of silly for me to blow $1k or more every three months while in the trial to go down there and have him look over things that we couldn’t really change (since I was in a trial). Perhaps someday I’ll go back but I have full faith in Dr. Matous and CBCI for now, and if I do another SCT it will be at PSL here with the CBCI crew instead of in Arizona again.
Shame, I’ll miss the banana bread french toast at Butterfields and Z Tejas. And renting a Mercedes from Sixt — sometimes along with “food for the soul” you need an auto for the soul as well.
I wanted to address something from a comment last week because I’ve been pondering it the last few days. In it the mother of a friend who is going through chemotherapy for another form of cancer noted that she didn’t know how I could “bounce back” from a failed trial.
Here’s the happy smiley cancer answer, which I’m posting in this blog from atop Mt. Everest after doing a free-climb without oxygen for blood cancers right before a helicopter whisks me away to a raw vegan meal so I have some energy for the 1,000k or whatever marathons are called now I’m running in this afternoon and then tonight where there’s a photo shoot for just my smile because gosh ducky darnit, I’m just so happy and lucky to have cancer and yay puppies! There’s always another wonderful chemotherapy to try, and we’re all sure the next one’s going to have less side effects and I’ll be on it 20 years from now! Hey here’s my two dogs now, Hope and Cure, to tell you in doggy sign language about how me having cancer has improved their lives! So buck up, little trooper, there’s nothing to worry about!
Have you met that person yet? They always seem fake to me. I know that’s unfair, but I can’t help it. Nor can I help wanting to punch them in the nuts. People like that, in situations like this, make you feel even worse than you normally do in my opinion. You can’t really say anything either, because we’re all fighting the same battle. Hell I envy those people, although I question whether they really exist — either way it doesn’t work for me. Either it feels like I’m lying to myself, or I’m lying to myself. So how do you really deal with bad news on this wonderful path we’re on?
Anyways, here’s the secret: I don’t think about it.
So just don’t think about your cancer, folks. Next question?
Really though, that is the answer. This is a horror show that never ends. It doesn’t take a day off. No matter what I do this cloud doesn’t go away. It’s in every car I drive, every waiting room, every ceiling tile I stare at in a hospital. It sits next to me at lunch, picks the radio station and next song on my commutes. I strap it in right after Ari is in her car seat, and I tuck it in at night right next to me. In fact there’s only one place I’ve found so far it doesn’t penetrate on its own, and I guard that jealously because it’s the only real relief I’ve had in almost four years.
I will die from multiple myleloma, most likely. My daughter’s daddy will be taken away. And if that’s not bad enough, because I’ve always had guilt issues, I feel a CRUSHING amount of guilt over that fact on a daily basis (the daughter bit). It taints every possible thing I do, bar none. So I’m driving to, say, work, and instead of the usual daydreams you’d get doing that I get a sudden image of my daughter crying in some hospital about why daddy didn’t take care of himself better so he didn’t die. Or I replay actual conversations I’ve overheard between my daughter and wife about how daddy can’t play right now because he’s sick and needs his rest (that happens more than I’d like).
I can keep listing those, but this isn’t Monday Depression Spiral with your host, Rich. How do you deal with the constant stream of disappointment?
Simple. You don’t.
What else can you do?
Should I blast out of my chair in the doctor’s office, shake my fist at the sky and scream “Why, WHY??!!” in some Oscar-winning performance every time we swap to a new chemo? That just sounds exhausting. Maybe I could shout about how it’s all so unfair?
So I suck it up, get in the car, try not to think about my daughter and if I do, save the tears until the sunglasses are on and just drive, man. Music up, all energy on banishing any thought. Just another day. Don’t think. Do. It’s just a day, just a moment in time. Because in the end, and this is really the point, I have to function, regardless of what LabCorp or a doctor says. I have a kiddo, and a mortgage, and responsibilities.
I am going to die from this.
Does that seem cavalier? I’ve been dealing with the concept of my own demise daily since I was diagnosed. I don’t want to die (well mostly I don’t), but I’ve had almost four years to come to grips with the concept. I’m not surprised anymore. Trust me I’ve gone over every possible permutation, scenario … it just doesn’t bother me a hell of a lot at this point. So what is the point of stressing about a test result, or a new chemotherapy regimen? I worry more about the logistics and side-effects; the need itself is no longer a concern.
A failed test? Man I’ve seen so many horrible test results in the past few years it’s almost funny to me now. “Yep, still on the train to Suckville. Next.” What else do you summon in protest when they’re ALL bad, except dark laughter and a few tears snuck in when nobody’s watching?
I have my moments. I have entire weeks, as my wife can tell you. But most of the time, regardless of how dark it gets inside, I try to keep it positive. Who wants to be around negative people all the time? So I tell black jokes about my health that are probably uncomfortable for people to laugh at (my wife hates those) but make me smile while I try to ignore the situation and just do what I can to make it through the day. I don’t think more than a day ahead as I’ve found that leads to thinking about things that can blow major holes in the emotional walls, and I breathe a lot. Lots of sighs too. You can’t really do anything else.
So that’s the answer.
You get used to it BECAUSE YOU HAVE TO. Because responsibilities, and guilt, and all the other fun things you’ve brought as baggage (or wreckage) to the party. Because if *I* can’t deal with it, how will anyone else dealing with my life?
Tony Robbins, I am not. Sorry. I’ve been asked some permutation of this almost since the beginning and it’s the only answer that rings true to me anymore. You deal with it because there’s no other choice. If you want to take into that cancer fighter’s angst and let the world know how you’re going to beat this goddamn thing, more power to you. If you want to stay in bed all day bemoaning your fate, hey, that’s your life choice and it’s not mine to criticize — trust me I get it. Me? I just try not to think about it. I already have, do, will. I’m far more interested in the few parts of my life I can salvage outside of this shitshow than to dwell on it any more than I already have to.
“It” doesn’t get better. I do, at rationalizing, being pragmatic, avoiding the disasters and trying to stay positive, if possible, but at the least stay standing. I can’t do more than that.
“Why didn’t daddy take better care of himself so he’d still be here?”
I do that to myself a lot, have that conversation that is. This situation constantly leads to these sketchy little daydreams, envisioning on a micro level what the world will be like when you’re gone. I think I did that before this all began, but death takes on a much more real and imminent feeling with a cancer diagnosis. It causes guilt, immense amounts of it, that are totally unfair but that you have to deal with. I wonder sometimes if a lot of folks sadness about cancer comes from that. On the bright side at least I know this is just a mental game being played and to not wallow in it too much. But if you can’t accept the truth, as painful as it is, then what can you accept?
It’s because I just didn’t, Ariana. Because I was selfish. Because I knew smoking and chewing tobacco was a bad idea and did it anyways. Because I knew that that food was fucking garbage but ate it anyways. Because I chose to ignore that all the chemicals and preservatives and food colors were most likely not doing me any favors. Because I had wifi and wireless signals caressing my DNA for 40+ years and who knows what impact that had. Because I drank too many Diet Dr. Peppers and touched the wrong bathroom door handle. Because I never thought it would happen to me. Who knows? In the end because I was weak somehow, and the giant invisible hand of Darwin or [insert deity here] decided to clean up the gene pool.
And I will be sorry, and feel a guilt so large that nothing can assuage it, every second of every day, until the day they take me from you. But until then I’ll try to just breathe and do what I can to stick around a lil’ bit longer, spoil you a bit, and see what happens to us.
So here’s to the next chemotherapy, bring that fucker on.