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.

Waiting on CAR-T and Fuck my Liver.

It’s been a long couple of weeks since that last entry. I do believe the Ambien was the culprit with the emotional problems, which subsided a few days after I stopped taking it. I attended one of the IOP sessions as well but decided, after talking to the wife, that it wasn’t for me. You could almost feel when my mental fortitude, for lack of a better way of describing it, came back. Was like putting on sunglasses when you are suddenly blinded through the windshield, you know?

But the IOP thing wasn’t a good fit. One, my breakdown or whatever you want to call it was due to a chemical problem which we fixed, two I can’t do group therapy 3-4 times a week for 3 1/2 hours a day for six weeks and keep my job, and lastly I realized it wasn’t a tailored experience (and how can it be in a group setting). For example, they have a theme and the theme of the week I attended was interpersonal relationships. That has nothing to do with what’s going on with me. You want depressing?  Sit through a week of therapy that has nothing to do with your problems.

I was disappointed because I wanted something to fit. I need help with my medications, and I need help with coping with this. Just stopping taking Ambien did not suddenly make my life not depressing — I simply can handle it now. Well at least it feels like I can, like I’m shielded again from the reality of all of this.

I didn’t feel like I belonged there either. The people were nice and all, but I’m sitting there with a bunch of unemployed folks, junkies … that has nothing to do with me. Is that elitist?  It’s not meant to sound that way — I just felt like I was sitting around a table playing “which one of these is not like the other.” And to be fair maybe they were too, so who knows. All I know at the end of the day is that I’m depressed because I have a terminal diagnosis and, were that not enough, I’m plagued by the guilt associated with this disease and the sacrifices made and to be made it has caused. I’m just trying to find the easiest mental and emotional path through things in the meantime, whether that be therapy, drugs, or some combination therein. Thereof? Can never remember that.

I did, however, meet with one of the social workers at the oncology clinic this past Friday for quite a while and requested some help. They are going to try to find someone in my zip code with an iota of experience with depression caused by a terminal disease diagnosis (which I did not have the first time I went into therapy after being diagnosed). I also requested information on palliative care, which my oncology clinic outsources. So some changes will definitely be getting made.

Before I get into that oncology visit, about a week and a half ago I checked myself into a local hospital, Sky Ridge. For a good 36 hours or so I had been feeling miserable — chills, sweats, total body weakness and fatigue, GI issues, couldn’t get comfortable, you name it. I struggled with what to do because without a fever, problems breathing or heartbeat irregularities I figured I’d go all the way downtown to PSL just to be told there’s nothing they can find and I have cancer, so deal with it (politely, of course).

After we put Ariana to bed, however, I just couldn’t take it any more so I drove myself to the local ED because I could not have safely made it to PSL (which is downtown Denver, I live in a small suburban area called Parker about 25 miles south of there). Sky Ridge was a shitshow but I got some morphine and Zofran, which helped immediately (not sure what a healthy dose of morphine doesn’t fix), and after a few hours a CT scan revealed that I had colitis.

Colitis? With like none of the symptoms?  I asked my oncology office to get my records from the hospital and have my doctor review them because that just didn’t sound right.

So Friday I met with my oncologist. First I learned that his longtime nurse navigator was leaving, which sucks as I relied on her so much. More troubling personally, however, is I found out something they didn’t mention to me in the ED that past visit is that there was a decent-sized spot on my liver that also showed up on that CT scan. The PET scan from February shows no activity in that spot so we’re hoping it’s nothing serious, but I’ll be going for some 45-minute MRI next week to find out. Fairly stressed out about this — not the MRI but that my cancer may very well, although unlikely, have metastasized to my liver.

The hits just keep coming lately.

We discussed CAR-T a bit as my parents were also at this appointment, and I’m still in limbo. It’s been about five months since I was treated with any sort of chemotherapy for my Myeloma and my numbers, which have been fairly stable, are now apparently slowly creeping up again. My doc got in touch with his contacts both in Nashville and at the Mayo Clinic in Rochester but the simple fact is that the sample sizes are just tiny right now for the study everyone wants to get into. I asked at what point do we go another route and was told probably in another month we’ll go for another stem cell transplant if we don’t hear anything.

I’m not sure I wouldn’t prefer that right now. Doing a stem cell in Denver would be easy, compared to when I did my first in Scottsdale at the Mayo Clinic, at least logistically. I know and like the BMT staff here and most importantly trust them, and all of my support is here. I have no fucking idea how I’d deal logistically with doing that CAR-T clinical trial in Nashville with zero family or friends anywhere’s near there. I know my support group would come together to figure it out but it would be hard — even Rochester would be hard, although I have family in Minnesota.

Anyways, I’m glad I’m feeling more stable mentally and emotionally right now because it was a tough meeting, what with the liver thing and everything else. Cancer has a way of becoming more real somehow every time you deal with it, which probably makes no sense. But things feel colder now, more finite. Maybe it’s this last vestige of myself trying to convince myself a miracle will happen (or at least not the worst case scenario) being snuffed out, the realization that it won’t in fact be different for me than those other folks who die from this stuff, etc.

I just feel sort of numb and sad, however, and a bit shell-shocked from all the news and health and mental issues in the last month.