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.

A new low.

This is a hard entry for me to write. Normally I just expose my life without a care, a habit born of almost three decades as a journalist and then a blogger. But I’ve always self-edited, keeping the most embarrassing parts private — although granted what I consider embarrassing and others might is apparently wildly different at times.

But for example, I don’t go into my marital issues here. It’s not really the point of the blog and detracts from what I’m doing with this, which is a bit more targeted.

Today’s topic I can’t really avoid, however, so strap yourselves in.

When last I wrote I was just about to start radiation treatments for tumorous growths found in my lower back and left hip. I’m happy to report that after 10 sessions those pains are gone; however, I don’t recall ever feeling so bad, so consistently or for so long as I have since. Only in the last few days have I stopped feeling nauseous 24/7 and I’m still sleeping a ton. That was a humiliating and unpleasant experience that I hope to never repeat, although chances are I’ll have to at some point.


As I was saying I’ve felt like a dumpster fire since, however — so much, in fact, that I ended up going into the hospital for a few nights a few weeks ago while they ran a barrage of tests to make sure my heart was still OK, lungs, etc. I know for a fact something was/is wrong, although whether it was aftershocks of the radiation treatment or not who knows. Unable to eat, no energy, soaking everything I’m wearing multiple times a night in sweat, chills so bad I was afraid I’d break a tooth … yeah that’s not normal even for a cancer patient. But, other than needing some blood supplements everything came out negative and I asked them to just discharge me after a few nights since I can sleep at home a hell of a lot better than at the hospital and they couldn’t find anything. I’m still suffering from a crushing amount of fatigue though and my energy levels are non-existent.

The doctors did put me back on a steroid, who’s name I’ve conveniently now forgotten, in case what was causing all of this was being weened off of the Prednisone (sp?) I was taking too quickly.

No news from either of the sites running the CAR-T clinical trial I’m trying to get into. The radiation treatments put that on the back-burner for now but with that in the rear-view it’s going to be time to deal with again. I’m honestly not sure what to do at this point.

Ariana, my daughter, has been so sweet during this time. I basically have dinner, if I can stomach it, and then go lie down upstairs, and she sneaks up when my wife isn’t looking to watch cooking shows with me. Granted letting her watch Hell’s Kitchen (Hulu binger, what can I say) isn’t going to win me any parent of the year awards but we enjoy it. She has her first therapy session at the end of this month — sort of preparation for a parent dying thing that was recommended to us. I can’t really focus on that right now though because just the thought of my illness being the reason she has to do that makes me want to scream and break stuff until there’s nothing left in the world to break.

That brings me to today, as I sit here in a bathrobe trying listlessly to find answers as to where things went south and did so so fast.

Yesterday I checked myself in to the hospital for a psych evaluation. This was prompted by what feels like weeks of hardcore depression and what’s called “passive” suicidal thoughts. I haven’t had much of an appetite for weeks, I couldn’t control my emotions in terms of sadness, and I just want to sleep all of the time, to not be awake so I didn’t have to think. The guilt of what my cancer has done to those around me has become too much to bear — I can’t look at my daughter without bursting into tears, and the realization of how bad my marriage has been damaged is almost too much as well.

I also feel hopeless about my cancer, and further like my doctors have given up as well. We haven’t discussed treatment options since I was rushed to Nashville in January to interview for the CAR-T study there but I know the list and it’s a short one. So what’s really left, you know?  Just to fade away, ruining everyone’s life around me in the process (what it feels like). My daughter who can’t have a healthy normal daddy. My wife who’s dying for intimacy in a virtually loveless marriage.

At some point you just have to wonder what’s the point.

For the last five years I’ve managed, if you can call it that, my depression over my diagnosis. In reality this has consumed me, utterly. I’m not me anymore, just some cancerous automaton who can’t even figure out the motions, who wants so badly to just have a day or two of normalcy but has forgotten what that even looks like.

But I’ve maintained, even managed a smile at times. I try desperately thought failingly to maintain friendships. I work, mindlessly, to support my family since it’s all I feel useful doing. I just don’t think about the cancer thing as much as I can, which requires some serious effort at times. I mean you can’t rationalize this away, at least I don’t think so. I’ve got terminal cancer and there’s no miracle happening here for me, no last-minute save on the horizon that I can see. I’ll die as my numbers creep up and the cancer causes more things like the tumors I just had removed, and to a greater or lesser extent take everyone around me with me on the journey down the drain. At this point I don’t even seem like I’ll be busting the average life expectancy post-diagnosis of seven years, despite all of the advantages I’ve had (best medical care and insurance, caught early, etc.).

Anyhow, I’ve maintained for the most part until recently but something, or some drug change, in the last month has made this almost untenable. So yesterday my wife called the oncologist and they told me to come down for a pysch evaluation, which is a pretty scary deal. In the end I was offered three options: hospitalization in a psych facility, an intensive outpatient therapy option, or basically nothing. The thought of being hospitalized in a pysch facility frankly scares the shit out of me, nor do I think it’s necessary, so we chose option B. I’m just sitting here waiting for the call for this all to begin.

In the meantime I’ve been doing my own drug evaluation and ditched the Ambien last night — that’s the only thing that’s really changed in the last week and it’s not really working the way I wanted anyways. So far so good.  I’m emotional today, but after yesterday that’s to be expected. I feel a little lost, embarrassed, and although I’m forging ahead with it I’m dreading this phone call from the psych people.

It’s bad enough that Ariana’s daddy is dying, he doesn’t have to be crazy too.

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.


The holidays were such an unmitigated shit-show thanks to family drama that it really hasn’t been until the last week or so that I’ve felt centered enough to where I felt comfortable opening this Pandora’s Box. That may sound like a weak excuse since everyone seemingly has family drama around the holidays, but if it helps your perspective I actually had to consult an attorney over the shenanigans this year.


So yeah, most of the little energy I have just went into surviving December. And scarred and battle-worn I’ve fallen off the cliff into 2018. Here’s to hoping it’s not the health nightmare 2017 was or I don’t see me making it out of this one — I had to do some paperwork recently for our disability insurance policy (which is apparently garbage), and here’s my list of hospitalizations during the past year:

Admission Discharge Procedure
1/18/2017 1/23/2017 Colon Resection
4/19/2017 4/23/2017 Chemotherapy: VDT-PACE
5/22/2017 5/23/2017 Multiple Myeloma Complications
6/19/2017 6/23/2017 Chemotherapy: VDT-PACE
7/19/2017 7/23/2017 Chemotherapy: VDT-PACE
8/13/2017 8/20/2017  Chemotherapy: VDT-PACE
9/5/2017 9/9/2017 Multiple Myeloma Complications
9/18/2017 9/29/2017 Pneumonia Treatment
10/2/2017 10/5/2017 Kyphoplasty
10/10/2017 10/15/2017 Multiple Myeloma Complications
10/17/2017 10/27/2017 Drain of Pericardial Cavity

Fun summer, that.

Anyways a few disconnected ramblings to pour out this time, so be forewarned.

I believe the last time I sat down here we were in a holding pattern to find out what Dr. Matous wants to do with me. The answer is CAR-T, but the question becomes which protocol and when. There are a few things complicating this issue, none of which I have an easy answer for:

  • The big news out of ASH was the anti-BCMA CAR-T treatments, specifically Bluebird Bio’s. Unfortunately CBCI does not have that available and won’t in the foreseeable future. They will have a two-target anti-BCMA trial opening up around the second quarter of 2018, but there’s (a) no guarantee I’d get in and (b) it’s a dosage trial, which is more experimental than I’m comfortable with.
  • Right now I’m not on any chemotherapy and we’re hoping my numbers stay stable while we figure out what to do next. Unfortunately that’s not the M.O. for my cancer so every two weeks I go in for bloodwork, and while relatively stable my numbers are creeping up. Talk about “scanxiety” … I’m not even sure what we do if they start really moving.  Need to remember to ask that tomorrow, actually.

Tomorrow … tomorrow I’ll find out more then as I go in for the monthly IViG infusion and talk to the doctor. This is pretty nerve-wracking at this point as I’m honestly not sure what to do. I’m going to set up an appointment at the Mayo Clinic with Dr. Mikhael to get some more input as well, whom I haven’t seen in over a year — perhaps he’s got some ideas.  I feel like I am definitely experiencing side effects of the cancer, however — my fatigue level is abnormally high and getting worse, and there’s something seriously wrong with my internal thermostat. Should have some preliminary answers about my temperature problems tomorrow as well.

In other health news I had an MRI last Friday for my back — I’m still having a ton of back pain and it seems to be coming from much lower down my spine this time. I should get an idea of what’s going on when we go over the results tomorrow but I have a hard time buying that there’s not something seriously wrong given the pain level. Early last week I took all of my pills out one morning, went to the kitchen to get more coffee to down them and then apparently had a chemobrain moment and just left them un-swallowed on my desk.  By lunchtime without the daily 40mg of Oxycontin on board I thought I was going to fucking die from the pain.

What else … oh! Unusual for me but I’m going to start doing reiki, or at least trying it, next week. One of the things I learned at that Myeloma support group I went to last month was that there’s a group here in Colorado that donates 12 weekly reiki treatments for free to cancer patients, so I figured I’d try it. Can’t hurt, right?

Lastly, I participated in a brain tumor Twitter chat last night which ended up being a double-edged sword. Normally I’d skip something like this but the topic was on advanced care planning and when your sub-group of cancer has as small an online footprint as Myeloma does, you take what you can get for support. Interesting chat although it stirred memories and a few things on my mental to-do list I didn’t want to think about last night, enhanced I’m sure by enjoying a bowl right before the chat started.

It does remind me, however, that I need to put together my “Hey I just died, here’s what you need to immediately do” note for the lockbox. I’ve been avoiding that one and doing so knowingly but it needs to be done. A few passwords and instructions and then I can cross it off. I’ve just been so depressed for so long due to the holiday season and how bad it got I just couldn’t, you know? But it’s time and I simply don’t have the luxury, certainly not after how bad my health got last year, of procrastinating — that’s not fair to Amy or Ari.  Sigh.

That’s about it for now. I’ll post at least a quick update tomorrowish once I find out more about the back and the rest of the doctor’s appointment. Happy New Year to you folks and hope 2018 finds you in better health than last year.

Group sessions and ASH.

I’ve had one of the worst weeks of my life, emotionally, so if this is discombobulated it’s because I am. Going to avoid getting into why, however, as it’s so ugly, anxiety-inducing and just plain wrong it’s a no-fly zone for now. Been fighting off a serious depression for a week straight and it’s taking everything I have just to maintain.

I did want to get a few things down on “paper” however, as it were — this is the Magellan aspect of writing for me, this hope that in just typing I can find connections, put my life in order, discover what the REAL problem is, exorcise something, whatever.

So one thing that’s somewhat interesting is my only real-life (as opposed to online) friend who has Myeloma, Mary, convinced me to go to a monthly support group in Denver with her this past Saturday.  Specifically we went to the Denver Multiple Myeloma Support Group, which meets downtown on the second Saturday morning of each month. It was interesting, and surprisingly (at least to me) I think I’ll try to make it regularly.  Oddly enough I tend to get a bit introverted speaking about myself in person so I don’t generally do group-speak activities but I figured fuck it, I’ll get to hang with a friend I don’t get to see enough and be supportive, plus why not?

So the agenda changes depending on whether they have speakers or not but this time the meeting started with a nice meditation and then we just went around the room sharing our stories. Obviously for privacy reasons I’ll avoid relating individual’s information but interestingly for there being only eight folks this particular morning there was a wide variety of Myeloma experiences, from a 19-year survivor to someone who just got diagnosed and hadn’t even started treatment yet.

One person’s experience was actually similar to mine in that they found out via a blood test that looked bizarre to a doctor instead of some catastrophic Myeloma-related incident.  And I mention this only because the person noted while relating their story the experience of that moment where you’re hoping it’s MGUS (“monoclonal gammopathy of undetermined significance.”).  Which for the uninitiated requires a bit of explanation — so MGUS is like a precursor to Myeloma with something like a 30% chance of blossoming into the wonderful gift we know and love (no idea where I remember that stat from, so apologies if it’s incorrect).

Point is it’s what you want your blood test to say when a doctor sends you to a hematologist to explain the weird blood test results. It’s a significant moment because here you are in the hematologist/oncologist office with what feels like your last chance that this is all some crazy mistake, that the nightmare of sitting in a cancer doc’s office isn’t really happening, primed and ready for the biggest sigh of relief you’ll ever have in your life … and then WHAM. Nope, sorry, fuck-o, you lose!

It feels like I’ve walked this road for so long that combined with the chemobrain I look back sometimes and wonder at it all, especially when I recall moments like that.  More, I wish I had some pithy useful conclusion so far besides “What a long and bizarrely tragic shit show,” heh.

Onward and upward, this weekend is the American Society of Hematology’s big annual meeting.  I’ve been following it on Twitter as best I can and re-Tweeting links to articles normal human beings can understand (i.e., minimal obscure acronyms and jargon), so check the Twitter feed if you want some highlights focused just on Myeloma.  All the big hitters in the industry seem to be there, including both Drs. Mikhael and Matous, my favorites, so it’s been interesting for sure. I’m not sure what the big takeaways are from the weekend yet in terms of new stuff for Myeloma, but my list to discuss with Dr. Matous this coming week includes:

  • what’s going on in CAR-T for Myeloma
  • what is my sub-type?
  • what’s all this about doubling up on the flu vaccinations
  • what’s the story with Venetoclax for Myeloma, and
  • what are the latest thoughts on transplants. Seems like I’m seeing more and more about allogeneic (other peoples) stem cells for relapsed Myeloma victims like me as opposed to a second autologous (your own).

No cure yet though. Also if you want a wrap-up Dr. Mikhael is one of the three experts who is going to present a free streamed discussion on the latest trends in treating Myeloma on Monday night which you can watch here.

That’s pretty much all I feel like unburdening myself with right now. I have a big meeting with the Doc on the 13th where we’ll be discussing what we do next, so I’ll post again this week when I’ve had time to process.  Toodles.



Well, I made it.  Forty-seven years old.

As opposed to other birthdays it almost feels like an accomplishment this time, like I “won” or something.  Crossed some invisible finish line in life, even though the race never ends.  Although sometimes just getting through a day you feel like that when you have that cancer monkey on your back, don’t you?  My time horizon has shifted so drastically that I can’t think about next week, or month, or God forbid year.  I just need to get through today and I’m never sure what hurdles I’ll have to surmount.

Up until yesterday I’ve been doing really well — great mood, energy, etc.  Since I got out of the hospital about a month ago I’ve been going to bed at reasonable times (a good 2-3 hours earlier than most of my life) which I’m sure has contributed to that and getting up without being grouchy when Ariana bursts into our bedroom at 6-6:30 am. It used to take me 30 minutes of groaning, phone-surfing and sheer willpower to get out of bed; now I just get up. In fact a few times I’ve let Amy stay in bed and taken the puppy out, fixed Ari some breakfast, made some coffee for myself (trying to wean off the Starbucks a bit) and been wide awake.

Like a real husband / dad. It’s been nice, I won’t lie. Since my diagnosis all those years ago I’ve felt like I’m phoning it in sometimes and I hate that. Especially when it comes to being a good dad. I know it’s silly to rail against the reality of this disease at times, such as the fatigue, the back pain, etc., but it still bothers me. You want to be the best parent ever, not whatever the fuck this is.  So it’s been nice.

I’m different since I left the hospital. More thoughtful, nicer, calmer. Did a lot of thinking staring at those ceiling tiles and so far so good.  My marriage is better, although if I don’t stop snoring that may be in jeopardy soon. I do more with Ariana, and less with my cell phone and computer. I’m sleeping better, although only with the help of a bunch of scary pharmaceuticals. Just hoping it continues as I like this version of me, especially contrasted to the me when I was taking Dexamethasone and destroying my life without even realizing it. *shudder*

Not sure if I’m coming down with something or not in the last few days but my energy is definitely lower which is weighing on me a lil’ bit — took a nap yesterday afternoon after leaving work early and although I didn’t get to sleep until around 9, I went to bed at like 7:30 pm.  Amy and her mom (nurse-to-be and nurse) believe I’ve still got a lot of healing to do and I’m inclined to agree.  Just hoping I don’t get sick … it’s never “just a cold” with me, at least this year, and I really could do without any more hospital stays or the accompanying bills.  So far though just a tiny runny nose and fatigue, so fingers crossed.

One concern right now is my taking Oxycontin daily. My back has been really bad so I’ve been popping one with the morning meds and it definitely works. Having been a hypochondriac for most of my life, however, I’m freaked out about whether I’m working on an opioid addiction. I know it’s ridiculous for a variety of reasons to think I’m addicted to it but I’m so wary of stuff like that — it’s one of the reasons I never did cocaine in my life (just every other drug, heh) and why I don’t drink. I need to figure out something though because I really am getting sick of the back pain. Another thing to discuss with the docs this month.

My internal thermostat is all fucked up as well. Ever since I left the hospital I’m either sweating or freezing. At the appointment with the oncology team that I’ll get into in a second it was suggested that perhaps I’m having thyroid issues — apparently what I was describing is a sign of thyroid issues. We didn’t schedule a test though so I need to remember to ask about that at my next visit.

Since I last wrote I met with Megan, the nurse practitioner from my oncologists’ team, and had a follow-up with Dr. Barley, the cardiologist that took care of me in the hospital. The heart looks good (according to the EKG) and Dr. Barley seemed pleased that I looked so healthy compared to the last she saw of me. We discussed if it was OK for me to take Carfilzomib (a chemotherapy that can affect the heart) and what drugs I could get off (the daily aspirin only, sigh) and worked out a tapering-off schedule for the steroid I’m taking.

Megan and I had a long meeting, which was awesome. Perhaps you’ve learned this yourself but there are some folks in healthcare who really do care about you and it shows, and she’s one. I also hate feeling rushed and none of the docs or their teams at CBCI have ever made me feel like that. Net-net is no chemo right now while my body heals up from all of the damage this year while Dr. Matous takes some serious time to review my case and figure out where to go next.  CAR-T clinical trial?  Stem cell transplant?  Carfilzomib?  Something else?  Either way I meet with the doctor on the 13th and I’m sure we’ll map something out to start after the holidays.

My hair has come back, although mostly white this time, and I’ve put about 10 pounds back on since I left the hospital.  People keep remarking on how much better I look, that I have color, etc. Considering I looked, and felt, like a corpse when I left the hospital a month ago, I appreciate the comments. It all seems so bizarre though, and I still feel a bit displaced.  Having eyebrows, a beard (albeit a white one) and some hair again certainly has helped though.

Although personally I attribute the hair growth to the puppy, who seems to take an inordinate amount of pleasure in licking my head.