3 a.m. Skittles

It’s been somewhat of a crazy few weeks that I haven’t entirely, or at all for that matter, processed, but I figured I should get something down here before I start forgetting things.

So a few weeks ago Amy and I came out to Nashville for my final week of tests. These set up a “baseline” to compare to after the procedure and included all sorts of blood tests, a PET scan and a bone marrow biopsy. Once those were done I went through three days of lymphodepletion chemotherapy of fludarabine and cyclophosphamide which wasn’t too bad (23rd-25th) — this chemotherapy prepares your body to receive the re-engineered T-cells.  Amy took off the next day back home, and the day after I Uber’ed to the hospital (the 28th). On the 29th I was infused with my re-engineered T-cells.

I’m now genetically modified. Bizarre.

Oh another thing to mention that’s kind of interesting is that they use the HIV virus to reprogram your T cells. As a result for a while I’ll test HIV-positive.

Leading up to this mentally and emotionally was rough. My parents decided to pick this time to start an immense amount of unsupportive, toxic drama even with me begging them to knock it off and see the bigger picture. I was terrified of being away from my daughter for this long (3 weeks) and how that was going to affect both her and me, frightened for my marriage (parent drama factors into that one, but that’s a while ‘nother Oprah), and of course scared about this procedure. We’re well beyond the part of the map where it says “Here Be Monsters” with this Car-t stuff.  No long-term data on efficacy or effects.  No guarantees about how this is going to work for me, and what to do if it doesn’t have stellar results.

Even the morning of the flight out here I questioned whether I should be doing this. In the end, though, the opportunity was just too good to say no and so many had given so much so I could get this chance. As I’ve talked about before there’s a giant guilt factor associated with cancer from all different aspects, and I realized this was a new one — that I was being given a chance to take part in a clinical trial that was a life or death chance for people who’s cancer was as far along as mine was. What right did I have to come this far just to throw it away?

So on the 29th I got my cells back, which just like a bone marrow transplant is somewhat of a non-event. I got my cells around 11:30 am and spent most of the day reading, until about 5:30pm when I noticed I was having wicked tinnitus and nausea. I called the nurse and my temperature had shot up to almost 103, I was dizzy, felt weak, etc. This is the dreaded cytokene release syndrome (“storm” or “CRS”), which to me was the scariest part of the process — the problem is you don’t know when or even if you’ll experience a storm. One nurse told me it’s a good thing to get one as it implies the treatment is working (an old wive’s tale as far as most medicines go, but who knows with Car-t). They can happen as soon as I had mine, or weeks after you leave the hospital (Jesus, that would have been terrifying). You can even have more than one, apparently.

All I know is mine was fucking awful. My brain went into full-on scrambled egg mode and I couldn’t even answer simple questions like who the president was or what year it was. I also had this super-annoying sensation where I felt like I had to urinate when I didn’t, which had me constantly going to and from the bathroom.

Somehow I managed to get to sleep that night only to wake up with a headache so bad I couldn’t see straight and just brutal nausea. We were able to medicate most of that away but I couldn’t convince the staff to give me any painkillers more fun than Oxycontin because my heart rate was dropping low enough that they were considering sending me to the ICU. I slept off and on that day but sleeping with a severe headache is, at least for me, just about impossible.

Then on Thursday things started to clear up, and by Friday I had an appetite and was able to keep some food down.

Since then it’s been mostly quiet.  I’ve had three friends who came out here on their own dime just to hang out, which meant the world to me, and all three of us had some great talks.  I’ve had a fairly high success rate bribing the nursing staff to grab me Starbucks (there’s one downstairs) as well, and I’ve just been reading, sleeping and gaming a bit. Just like with a bone marrow transplant, boredom is the real bitch.  Oh, and a woman I’ve talked to online several times, Cherie, came to visit which was awesome. Cherie is in the same clinical trial I’m in and in her case the treatment completely eradicated her disease. As in Myeloma-free. She and others like her are why this particular clinical trial is so sought after.

I go for late-night walks around the floor every night with my Kindle and enough change to get a bottle of water and some munchies.  It’s a poor replacement for when I was home and would grab a glass full of frozen mixed fruit every night (my snack of choice). Although there is something to be said for Skittles and Twix bars at 3 a.m.

Here we go (again).

Sunday morning I take off for Nashville for the “big” trip.  I’ll have a week of evaluations to make absolutely sure I’m eligible for the study and to establish baselines starting Monday, followed by 3 days of IV chemotherapy (fludarabine and cyclophosphamide) to remove some of my own immune cells and make my body ready to accept the CAR-T cells.  I go into the hospital the next day (the 28th) and on the 29th I’m given my re-engineered T cells back.

At that point I’m GMO. There’s an irony to that, for those who know my wife and I, that I find funny. About the only funny part to this, really.

After about two weeks of being monitored in-patient, I’m released from the hospital but have to stay in Nashville for another two weeks or so to be monitored regularly for side effects. Assuming everything’s OK at that point I get to come home.

I don’t know how much I want to get into here today (guess we’ll find out).  I’m having what I call an “emotional” day today, where everything is making me sad. I’ve had a horrific week or two with my family, truly awful, during which I’ve penned multiple far-too-long emails begging them to have a heart and understand what I’m going through. On top of that the reality that I won’t see my daughter for three weeks at least is kicking in and it’s killing me. I’m feeling the pressure of this clinical trial and that I might fuck it up somehow after all of this effort on so many people’s parts, or that it won’t work and it will end up being the final disappointment in a long chain of them.

When I did my bone marrow transplant back in 2014 I not only had my wife and daughter out in Scottsdale with me but my wife’s step-father as well. I felt taking care of, and I knew if something went wrong or I just needed a hug or something I could just pick up the phone. Now, going through this nightmare, I’ll be alone while in the hospital. I’m stressed about that as well but more just saddened by it.  I mean what if something goes really wrong?  I won’t even be able to give a last hug or say goodbye to my daughter.

Yeah, and on that note I think we’re all done with this entry before I dig an emotional hole I won’t be able to get out of.  I’ll update here as much as possible while in Nashville, but for more frequent updates please keep an eye on my Twitter feed instead.

The Dude Abides.

Sitting here with my wife and daughter Saturday night, idly typing while a movie plays and  lost for a moment in what normalcy must feel like. You forget, you know. So many months, years, of the anxiety, the chronic pain, the never-ending appointments, the sleepless nights.  It’s so hard sometimes just to remember what normal was.

Amy and I got back from Nashville yesterday. I’m grateful she was able to come with me and for her parents stepping up and staying with Ariana and Trixie while we were gone. I would have been screwed if I had gone out there solo — just too much emotionally and physically for me now. But almost as importantly it gave me some alone time with my wife to just talk, something we haven’t done enough. Ever, really.

So after a relatively quick meeting and bloodwork on Wednesday, I showed up at the apheresis department at 7:30 am to have my T Cells harvested.  This is done by a process called leukapheresis (I linked a photo of this on Instagram and Twitter if you want to see it). So I had an IV put in each arm, and from 7:30 am until 3:15 pm it cycled my blood through a machine that separated out the white blood cells. I slept through the process for the most part, having not slept well for the previous few nights. Other than being extremely cold during the process it wasn’t too bad, although when it was done I was pretty wiped out.

Mentally and emotionally this was a really hard week. My disease has progressed fairly substantially … my bone marrow biopsy from the previous week was 95% Myeloma, the highest I’ve ever recorded.  I talked with Dr. Berdeja about that briefly during the harvest and while he thought they may just have hit a pocket of bad cells to get that number, it’s still pretty scary. The skeletal survey wasn’t much better … while I don’t even understand half the terms in the analysis, I know it’s not good:

“Small 5 mm and less fairly diffuse round lucencies throughout visible skull on lateral x-ray of skull.  Scattered similar small round lucencies in cervical spine and thoracic spine.  Moderate T12 compression fracture.  Moderate L2 compression fracture treated with vertebroplasty.  Right internal jugular Port-A-Cath in satisfactory position. Previous right upper quadrant abdominal surgery. Scattered small round lucencies in multiple ribs. Small round lucencies in mid left and right humeral diaphysis intramedullary. Ovoid lucency in left lateral upper acetabulum deep to cortex. Pelvic phleboliths. Small lucencies in proximal femoral diaphysys intramedullary.”

Even not understanding most of that (I’ll have the doctors explain it this week, have an oncology appointment on the 24th), I know it ain’t good. Also now I know why my goddamn back has been killing me even after having that L2 vertebrae fixed; apparently the vertebrae two above the fixed one is fractured as well. Christ. Not even sure what to do about that, but I guess I’ll find out.  Right now the name of the game is to not fuck up my qualification for this clinical trial so I’m walking on eggshells and making sure everything is run by Nashville.

Other than that and fatigue I’m having what I can only assume is neuropathy in my toes.  It started a few months ago and I let the oncologists here in Denver know, who told me to let them know if it starts to hurt. It kind of feels like a combination of all of your toes being on pins and needles and numb at the same time, hurts to the touch, but now is creeping towards my heels. Definitely makes walking a new and unpleasant experience, so I’m doubly thankful I’m done doing so in airports for at least five weeks. Although I did for the first time in my life get a courtesy cart ride this time, and man, that’s the bomb. I was so excited to not have to walk from the car rental place I gave the guy a $20.

Assuming all goes to plan, I will be re-evaluated on May 21st in Nashville, start chemotherapy on the 23rd for 3 days, and then admitted to the hospital on the 27th. I’ll get my re-engineered T Cells back on the 28th, be in the hospital for two weeks, and then outpatient in Nashville for two weeks. Before all of that they want me to do some form of chemotherapy as well which I’ll start this coming week — it apparently has to be one I’ve already done previously and has to end before May 8th so I’m “clean” for two weeks. My oncologist here and the one running the trial in Nashville have apparently already coordinated on that.

So that’s the mechanics and logistics of it all. I spend a lot of time trying not to think about it (and failing miserably). It’s just so … big. There’s so much riding on this, so much logistically to work out especially with a kiddo in school, so much danger. There’s no long-term knowledge of what happens with this, and there’s a good amount of risk involved (although they seem to be aware of how to deal with most contingencies). But it’s pretty scary. Spent a ton of time in my head this past week and I think the only thing that saved me, especially with the lack of sleep, was having Amy there.  I know we’re having problems now but the ability to just ask someone to spoon you for a bit while you cry quietly, versus having nothing there but empty space and feeling like nobody cares, is worlds apart.

As I said earlier we talked a lot on this trip. Neither of us are religious but at one point I was talking about how it’s taken all of this shit for the past five years to scour away the person I was (the bad parts). The fucked-up upbringing and ideals I had, the complete lack of knowing and experiencing what a good relationship and intimacy are supposed to be like; what a good person is, really. Although ironically now perhaps too late due to this disease, I feel like I’m on the right path as a person. Kinder, more thoughtful, more loving, less cynical. I have my moments, of course. But it’s a startling change from who I was, I can tell you that.

Amy commented that perhaps this is what had to happen, that this was the universes’ plan. This is something I’ve struggled with most of my life, really. Raised as a non-believing Catholic, finding out I had cancer put the kibosh on any sort of belief in a higher power. Which I think’s common with cancer patients or anyone else struggling with their health or things in their life — the constant emptiness that threatens to break you down when you just ask the constant “why me’s”, you know? Perhaps she’s right — it definitely made me think, and I will continue to do so.

Although to be honest I wish I could just stop, thinking that is. The gravity of all of this is sinking in and it’s tough to grasp at times. I didn’t feel so much like a guinea pig in the last clinical trial I participated in, partially because the main component was an established Myeloma drug that they were just adding another drug to (so I didn’t see much downside risk). This time though the reality of what we’re doing is seeping in and it’s scary. No idea of the long-term effects. Cutting edge sci-fi-ish technology. Only a handful of people on this planet have done anything like this. Which is an interesting thought in itself — am I just lucky for the opportunity, or one of the worst off? A bit of both I think.

And what do I do if it doesn’t work?

And what do I do if it does?  There’s a woman who just went through this study from Texas that I’m in a Facebook group with and have communicated with. She was in a similar place to my own in terms of disease progression.  She just got the news she’s now in complete remission.  Complete. Remission.

I’ve been doing this for so long, had every treatment fail after such short periods of time, that I can’t even really get my head around that. What would it even be like to not be in pain anymore? To be … normal? I try not to get my hopes up too too much because that way lies madness as well, but man.  Just … man.  I can’t imagine.  No more daddy’s too sick for this, or too tired for that.  No more pity.  No more tears of despair. I’ve lived with this stuff for so long it’s become my life … to actually contemplate feeling human again?  It’s a bit much.

Knowing me I’d probably just feel guilty that more people didn’t get to experience it.  Yeah I’m wired strange, I know.

Lots of questions, things to think about, things to avoid thinking about. I try, and sometimes succeed, in keeping my spirits up though. And chew Xanax like candy. At least I’m sleeping better … I added St. John’s Wort (spelling?) to my cocktail of nightly sleep meds (1mg of Xanax and 1mg of Ativan) and I’ve been sleeping through the night better.  Still have trouble shutting my brain off to get there but at least when I do it’s solid sleep.  Too solid, I just want to stay in bed every morning now.  But there you go, another tip from a 5-year Myeloma “expert.”

Anyhow, off to the local oncologist tomorrow for a talk about a bridging chemotherapy (think I mentioned that above) and to get an IViG infusion. Going to ask about my back and toes too — the name of the game right now is DO NOT FUCK UP YOUR QUALIFICATION FOR THE CLINICAL TRIAL. And make it through, one step after the other, somehow.  I feel like we’re coming to a crescendo with all of this, somehow. That one way or the other life with be altered permanently in the next few months. It’s chilling, but then again as low as I feel most days I welcome it.

CAR-T Begins.

I mentioned it on Twitter and Facebook but haven’t had a chance, or to be honest the desire (Pandora’s Box issues) to sit down and write this. But I got the call and I got into the expansion trial for Celgene/Bluebird’s bb2121 clinical trial.

Apparently I actually got in in January, but because I was receiving radiation for those tumors in my back and hip at the time the nurse in charge didn’t even mention it, just asked me some questions.

So I flew out to Nashville last week for the initial testing.  I went by myself, which was a mistake — it was all just a little too much, too real. I’ve been dealing with so much of this cancer alone but I just don’t have the mental and physical strength anymore, especially after the last few months.  I hadn’t slept the night before I flew out and my wife offered to drive me to the airport that morning since I was in such bad shape. Spent most of the trip just mentally trying to push myself to the next meeting, the next test, etc.

I had a TON of blood taken, got a new skeletal survey, met with the coordinator several times, signed all of the paperwork, met with the apheresis folks who will draw my T-Cells this coming week (I’ll get to that), and then on the 10th I had a bone marrow biopsy. I’m still hurting from that one — and it’s worth mentioning that if you drive yourself to one of those they won’t give you Ativan and Morphine, just a local.  So after having what felt like most of my pelvis clawed out of this tiny hole in my beltline I got to hop behind the wheel, drive to the airport, sit a few hours and then sit on a plane for 3 hours. One of the worst days I’ve had in a while.

And the week since … I still can’t bend over without extreme pain.  On the bright side my back isn’t bothering me as much, heh. Not like I could tell.

This Tuesday I fly back out to Nashville for a meeting at the clinic and then the next day (19th) they draw out my T-Cells. My wife agreed to come with me this time — like I said I just can’t do this stuff alone anymore. I was seriously losing it in the hotel last week and about the only lifeline I had was a very close family friend who tried to fly out to stay with me — talk about friendship. I feel like my mental and emotional fortitude has just crumbled, especially lately. I felt lonely sometimes (well, a lot) when I’d have to go to Scottsdale alone for the Mayo Clinic visits but I felt stronger back then, physically and otherwise. Now I feel infirm and some days each step seems like it’s just one too many to take. Hard to explain.

But like I said this time I have my wife with me, someone to hold my hand through this stuff.  I’ll be honest (when aren’t I), I’m fairly scared about all of this. New techniques, no idea of long-term effects.  So the way it works is they harvest my T-Cells, and then send them to a lab for 2-5 weeks to be reprogrammed to fight the Myeloma. I go back to Nashville then, do more tests and 3 days of chemotherapy, and then enter the hospital. They reintroduce my reprogrammed T-Cells and then I’m in the hospital for two weeks while apparently all hell breaks loose — your body fights against the new cells, which can be pretty dangerous. After making it through all of that I’m out-patient in Nashville for 2 more weeks in a hotel and then I get to come home, but I’ll be flying out there once a month for years apparently.  Pretty intense.  Too intense if I think about it too much.

With Ari still in school just the logistics of being in Nashville for those 5 weeks are going to be hard. The study, amazingly, pays for my hotel while I’m out there but not for the two weeks I’m in-patient. That’s a huge relief as these last-minute plane tickets have been breaking the bank. But ideally I’d like someone out there all the time, or at least while I’m out-patient (well I have to have someone when I’m out-patient, I’ll require a caregiver). I have no idea how to juggle that but we’re back-burnering that problem until we find out when the dates actually are. The bone marrow transplant I did in Scottsdale was much easier as Ari wasn’t in school then, so I just got us a condo for several months and we basically moved out there with her step-father coming to help for a month.

Who has offered to help again, because unlike my folks he seems to actually care about me. Sigh.

I feel like I’m standing at the foot of Everest, unequipped and unprepared, wondering how the fuck I’m supposed to climb it. I had hoped that something like this would have people coming out of the woodwork to help, emotionally and to just take some of the load off, and it has in some quarters, but those that should have been closest to me (namely, my parents) are being awful.  Really awful.  And it’s fucking me up worse than I like to admit.  I just don’t get it, or them, but it hurts. My anxiety level is at an all-time high, although the suicidal thoughts and hardcore depression are not like they were when I was taking that Ambien. I mean I’m depressed, for sure, but not like that.

Although I have found a new trick lately … two Ativan and a Xanax before bed.  It doesn’t knock me out but I sleep really well.

I know this is sort of all over the place. I’m all over the place today. Had a really bad day thanks to my folks yesterday, not feeling great, and like I said I’m scared of all of this. Not like 5 years of chemotherapy wasn’t “serious” but this feels, I dunno, SERIOUS. Scared of fucking it up, scared of all of the travel, the results, being away from my comfort zone, my daughter, etc.  Rough times.

People ask me a lot how I do “this.” It’s the same thing as thinking, like some do, that a cancer patient is some sort of hero or something for not just laying down and dying immediately. They express wonder at how I still go to work, etc.  I remember thinking about this when I landed in Nashville last week, exhausted, with a long walk to the car rental garage, and just looked down and focused on putting one foot in front of the other one when I really just wanted to lay down right there. That’s my life, really. When in doubt, forward motion. It’s not heroic. Maybe it’d be more heroic to just give up and say fuck this, to stop ruining everyone elses’ life around me with this fucking disease.  I dunno.

I just keep moving.  Or trying to, anyways. So next stop, Nashville. And although she doesn’t read my blog (don’t ask), thank you, Amy, for coming with me to hold my hand.

A Third Option.

So last week I sat down for an office visit with the nurse practitioner, Megan, from my oncology team. We talked about the various problems I’m having, from the full-body pain to the sweats/chills, the severe depression, you name it. At one point she asked if she could give me a hug which is about when I broke down. She also told me that for what it was worth, if I were gone (we were talking about suicide) that I would be missed at CBCI. It touched me. Megan is one of those special medical personnel that actually cares and it comes through every time I talk to her.

She also made good on her promise to try to solve all of these problems, emailing me an action plan and calling me with Dr. Matous on the line later in the day. So here’s what we’re planning on in no specific order:

  • Increasing the hydrocortisone steroid back up to the original dosage to see if it helps with the temperature issues. Which, I’m happy to say, it seems to have had an impact with. Still sweating for no apparent reason at times but it’s not as frequent, and I’m hoping that trend continues. That really was driving me batshit insane.
  • Increasing the Oxycontin dosage from 40 mg tabs to 60’s but only after we give the steroid change a chance to see if it has an affect. Since it has I still haven’t filled that prescription.
  • Lighting a fire under the social worker’s ass I talked to a few weeks ago that never got back to me. By the next day I had a spreadsheet of all of their recommended providers and have already picked a few for my wife to review (going to deal with our marital issues first). Score one for Megan.
  • Check my testosterone level — presumably I’ll hear about this in one of my next visits.
  • Schedule another MRI of my spine to see why I’m still in pain.

I had an MRI earlier that day on my liver to explore what that spot was that showed up.  Turns out it is a benign liver hemangioma, which apparently is a tangle of blood vessels.  Either way she said that was very, very good news. I had no idea how dangerous liver cancer was until looking it up after hearing this (for once I skipped Dr. Google)  so I probably should have been more relieved, but at least it’s nothing serious or that needs to be treated.

I left the oncologist having obviously been crying and had several nurses ask if they could hug me as I made my way out, red-eyed. That made me feel nice, although it was hard — I have such a lack of touch in my life, and in-person caring, that it had a big impact. Not used to people being sweet to me, although I wish I was. Always have, really, I’ve just been too introverted to allow it in my life I guess.

On the way home I got a call from the oncology team with the big news — after reviewing everything, they want me to go back on chemo. One of the only drugs I haven’t tried yet, Carfilzomib, specifically. I’ll be mixing it with Pomalyst and Prednisone — it’s actually supposed to be done with Dex as the steroid but I refuse to take that again, so Prednisone it is. Nashville just isn’t calling and Dr. Matous let me know that he talked to Dr. Morie Gertz, the main guy in myeloma at the Mayo Clinic, and Gertz said the wait list for the trial I want is “substantial.” My doctor is also concerned that I still may not be strong enough for a stem cell transplant, so we’re going to try this chemo regimen.

I’m mixed on it. Part of me is glad just to have a plan, although this is going to be a pain in the ass (Carfilzomib is an IV-administered chemo done several times a week) logistics-wise. But maybe it works, you know? In the meantime there’s more time for spots to open in the clinical trials and for my body to hopefully strengthen to do another stem cell transplant. Either way I’m not in limbo anymore, and I think that status was adding to my mental distress.

On the marital front I sat down with my wife, sometimes kneeling, and worked out a plan to make our marriage a primary focus in my life if she’d give me a chance to prove I’m not the Dex-monster I became for years. Not only was she amenable but since then I can tell she’s working on it as well, and while awkward at times, we’re making progress. We had two dates this past weekend that were a lot of fun, just the two of us, and like I said above we’re going to be doing some counseling to try to fix the main problems. Either way it’s been pleasant for the last week or so and felt like family more than I recall having felt before– there have been times when I’ve felt like I was an enemy combatant in my own home and flat-out hated by my wife.

I just can’t take the cancer PLUS the realization that my marriage is dead — it made me realize I just didn’t have much left to live for without my family, and fueled a lot, I think, of the suicidal and hopeless thoughts I’ve been plagued with for so long now.  This is just too much, too painful, to go through alone or pretending, knowing you are making your partner miserable and that they were, at times, rooting for you NOT to survive. So fingers crossed.  I am trying, and that’s all I can do.

 

Mid-Afternoon Rambling.

Have you ever seen one of those crazy videos where someone’s mountain biking on the top of a mountain with a sheer drop off either side? I feel like that emotionally today.

Not sure why, really. As far as I know I slept OK, although I woke up soaked in sweat. Felt like hell when my daughter woke me up but that’s the norm now. I get up, make some coffee and when it’s cooled enough take my morning medications with it. 30-60 minutes from then I start feeling “normal,” or at least like I can function at some minimal level. Hit Starbucks on the way to work for more go-juice and have just been sitting here, not really accomplishing much, ever since.

My wife had to help me get my socks on today. That’s embarrassing, but kind of her to offer.  I can do it but the yoga involved isn’t fun.  No idea what to do about that (my back) … my flexibility is next to nil and I still have daily back pain. I’m afraid if I go for more testing though they’ll find another tumor or fracture and I just don’t want to deal with that right now. That probably seems reckless but it is what it is. The back surgery I can handle but screw getting radiation treatments again.

I’ve at least gotten a few things done today to clean up the to-do list, like a renewal of this new sleep drug (Seroquel) that the mental health folks in Aurora had me try. Still question whether taking anti-psychotics is the way to go for a sleep aid though, especially when the website says to stop using it if you are experiencing sweating, chills, weakness. Might try a night or two without this one come to think of it, now that I’ve ordered a new bottle of course =/ I was on Zyprexa for sleep before too and it’s the same sort of drug I believe.

Ugh, sweating like a pig. I wish I knew what was causing my internal thermostat to freak out like this but I’ve about had enough now. If I’m not sweating I’ve got the chills. There has to be a solution to this somewhere. I’m guessing either the steroids I’m still on (and will be, apparently, for a while) or the stuff I’m using to sleep is causing this. Would kill for a day without soaking through my t-shirt or freezing to death in a 70 degree house though (for most of my life I thought that was actually too warm).

Got my appointments with CBCI set up with the new nurse navigator and got the status of the liver MRI appointment (waiting to be scheduled since it passed approval in finance).  I needed to call Nashville about my clinical trial status today, damnit. That’s one thing I have to do tomorrow now, all the contact info is at home.

Wish I could bust these blues today.  The last few weeks I’ve felt disconnected, even once the mental wall was rebuilt as the Ambien cleared my system. I know realistically that on a lot of levels that there’s no point to being depressed right now, but I’m having trouble shaking it. I guess it’s just been so long since I’ve felt remotely close to “normal” that it’s weighing too much on me — sick of it. I’d like a day with some energy, no pain, laughs, and not feeling like an outsider in my own life.

I think part of it lately is it seems like a huge portion of my life is spent dealing with this — like all of it, lately. Forgetting for a second the never-ending appointments and trips downtown to the oncology clinic, just the day-to-day constant reminders of the disease — the pain, the pharmacy’s worth of pills I have to take every day, feeling like shit, the depression, the constant anxiety about every little weird physical thing, yada yada yada.

I cannot express how much I envy people without cancer their blissful ignorance of this existence or the lack of these things that they are allowed to take for granted.

Anyways, hopefully the social worker I talked to Friday will come through soon with a list of therapists I can get in touch with, because this has got to change.

Maybe now I’ll get super powers.

I’m mentally numb today, just sort of going through the motions as my brain frantically tries to process the last 24 hours of my life while remaining functional.

On Tuesday I had an appointment to get the monthly infusion of IViG and meet with Dr. Matous to map out where we were going with my care. One of the things we had to discuss were the results of an MRI from the previous week since I’m still having tremendous amounts of back pain and it seems lower than where I had the L2 kyphoplasty. So he hands me the report and we read it together, look at the slides, and there’s one that’s troubling him (it’s all troubling to me because I can’t understand a word on the page). So he calls up radiology and gets one of their doctors on the phone to discuss what we’re looking at.

And guess what?

Turns out that the back pain is being caused by a tumor.

Lest that be the only bomb to drop on me, the MRI also showed that my spine has gone from relatively OK to a fucking dumpster fire since my last MRI (July-ish), and there’s serious concern that I’m at risk of more fractures like the one from last October. On that end we’ll be going back to monthly Zometa infusions (was quarterly) and, well, finger-crossing I guess. Definitely won’t be picking up anything heavy anytime soon. I asked if the Zometa could stop and perhaps reverse the trend we were seeing in the pictures and he said yes, so we’ll see. I honestly have my doubts — if it was working then my back wouldn’t look like it does now, would it?

In discussing CAR-T and what we wanted to do about my Myeloma, I brought up that perhaps I should go chat with my doctor at the Mayo Clinic to see if the MC is running a Bluebird Bio anti-BCMA CAR-T trial (the one I and everyone else with Myeloma on the planet wants to get into).  My local oncologist proceeded to email my doctor at the Mayo Clinic and while I can’t get into why right now, suffice it to say I no longer have a contact there (not in a bad way, just shouldn’t discuss it right now). Not really what I wanted to hear, although there is good news on that front if you’ll bear with my tale a bit longer.

So with a parting expression of concern over me from Dr. M I was released back into the wilds to process all of this.

Yeah didn’t happen.

I haven’t had an office visit go that far south since I found out my stem cell transplant was largely ineffective.  A tumor? A FUCKING TUMOR? I didn’t even know you could get a tumor from Myeloma. And on top of that I thought my disease was in kind of a holding pattern. I also thought we were supposed to be able to see the bad stuff related to Myeloma coming from miles away and react quicker, not suddenly find a tumor the size of one of my vertebrae lodged into my back.

Jesus wept.

So Dr. Matous set me up to see a radiation oncologist at Sky Ridge near my house/office for radiation immediately. Amy and I met with the doctor there on Wednesday, Dr. Mateskon, and liked him and his staff. While discussing everything I noted to him during the consult that I had developed severe pain in my left hip as well, and hey Christmas in January, the CT scan they ran after we talked showed I had another tumor in the socket of my hip.

Just wonderful.

I should note at this point, and if for nothing else than to stop this narrative from completely circling the drain, one weird but good thing happened at the radiation office. During the meeting Dr. Mateskon noted that we wouldn’t be able to do continuous days of treatment because according to a text he had received that morning from Dr. Matous at CBCI, I had an appointment in Nashville next week. Baffled, what we pieced together is that Dr. Matous came through and got me an appointment with a doctor running an arm of that coveted Bluebird Bio clinical trial at Tennessee Oncology and was going to call me later. So Sunday I fly out to Nashville to try to get accepted into that.  Crazy eh? So some good news in a sea of drowning crapmonkies.

Anyways, back to the radiation thing. So they do the CT, find that second tumor, and start prepping me to start the therapy (which involves actually tattoo’ing me so they get the placement right or something). I’ll be doing 10 sessions, the first of which I did this morning. No major physical side effects so far except I feel sort of tingly — the Zometa, which I also got yesterday, messes with me so I can’t really separate what is bothering me right now and why. I’m totally numb mentally and emotionally, however — I don’t think any of this has sunk in, really, even when I was laying on the table in that monstrous radiation machine today.

I mean I just had radiation therapy for a tumor on my spine.

What in the unholy fuck?  How did we get here?

I dunno. I’m trying not to think too much about all of this because when I do I don’t like what my brain starts doing. Like asking questions about how if we found two tumors that easily, are there any more anywhere? Why all of a sudden do I have these? Now I’m wondering if every weird sensation or pain is a tumor. It never stops. Even the Nashville thing is freaking me out. Forgetting the fact we’re talking about the bleeding edge of science on cancer with zero long-term data on survivability, etc., I’d be doing that treatment solo. I can’t take Ariana out of school … so assuming I even get into the trial, which is a long-shot, I’ll be moving to Nashville for what I understand to be about two months. That’s scary to me, and really depressing.

So many unknowns and new paths have opened that I feel like I’m not even adrift, I’m being actively overwhelmed and pulled under. I fear when some of this starts sinking in and the wall breaks down a bit.

Anyhow, that’s the update. I’ll write more if the mood hits me, something else happens (which damn near might push me over the edge, so let’s hope not) or when I learn more in Nashville.  Hasta.