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.

 

The Summer of 2017.

When I was a child I had a little stuffed bear.  I couldn’t tell you what he originally looked like even though I still have him — almost 47 years of wear and tear from myself and of course now my daughter, on top of being mauled by various dogs through the years, have taken their toll.  In fact he’s more triage than bear at this point.  A sad faded yellow with a white belly, a hard surface where presumably at some point the nose was attached, and covered with my father’s best attempts at sewing him back together after one of the labs would get a hold of him.  Stuffing leaks from unfixed holes in his belly sometimes and both ears could use some reconstruction work.

I’ve thought a lot about that bear recently. This just hasn’t been my year, especially physically — three surgeries have left me looking like him in my mind (with a slightly worse tan); scars across my stomach, translucent skin, no eyebrows or hair, etc.  As I write this, in fact, today marks just over a week since I was last in the ICU at the hospital and the longest I’ve been out of PSL in the last three months.

I realized something (well a lot of somethings, but one big one) during all of that time.

I have cancer.

I hope that makes sense in a non-patronizing way — obviously I know I’ve had cancer for over 4 1/2 years now. But up until this year it felt manageable, almost surreal … something you can picture, form words around, but not really understand.  As Dr. Mikhael at the Mayo Clinic pointed out to me years ago I wouldn’t even know I had a terminal disease except people kept telling me I did (and making me take drugs for it).

But this year?  This year I’ve watched, helplessly, as my health has deteriorated to the point where on a few of these visits I (and others) were convinced I wasn’t going to be leaving the hospital again.  Worst of all, at least to me, was having so much time to really think about that.  At the risk of making too broad an assumption I think most people would prefer to die suddenly, painlessly, their affairs in order.  But there’s a special Hell in just waiting and kinda wishing to die that defies me to really explain it satisfactorily, in crying yourself to sleep in an uncomfortable hospital bed thinking it wouldn’t be so bad if you just didn’t wake up tomorrow.  Even though the consequences on those around you that you care the most about would be so brutal — that tipping point, emotionally, where you just stop caring and the pain of it all trumps the logical, the kind, the caring.  Where you just don’t want to feel anymore, anything.

It’s that inflection point that really scares me about death when I think about it — when I can say to myself that I’m sorry, Ariana, but daddy just couldn’t take it any more.

I haven’t updated for a while, I should probably tell this tale.

VTD-PACE round four fucked me up pretty good.  It did its work, in terms of my numbers (which typically I don’t have handy as I type this), but the price was too high — I’ve been a medical dumpster fire since the end of the treatment and the khyphoplasty for my back fracture.

Things started like the post-PACE hospitalization week always did each cycle, with this overwhelming mental, physical and emotional sense that something was seriously wrong. Each cycle that’s gotten worse but round 4’s was impressive — I was a basket case for a few days. I can’t even put to words, were I even willing to share the thoughts and imagery, of what was going through my head. I would hazard a guess that the massive amounts of steroids in this treatment causes this reaction, but regardless it’s the death of all hope, this black pit that you can’t get yourself out of except by waiting it out.

Then the cold hit.  Having just been hospitalized for pneumonia I wasn’t too worried as I felt decent-ish and had just had an IViG infusion, but then the sputum I was coughing up started being mostly blood (sorry for the gross image) and other symptoms started appearing (body pains, shortness of and difficulty catching my breath, etc.).  Back to the ER and into the hospital again.  Turns out not only did I still have (or had developed a new) pneumonia, but I had mold in my lungs.  Aspergillis, if you were curious, although I prefer to call it “Bob.”  Aspergillis sounds like somewhere you have dinner in the Hamptons after beating the slaves or whatever people who live in the Hamptons do for fun.

And that, btw, is the end of the MMJ treatments for now.  Which figures — I take something like 17 medications and the only one that truly helped is now lost to me.  Yeah that warning about how immune-compromised people should probably avoid certain things?  Not bullshit apparently.

The mold thing led to a deeper problem — one of the main concerns with PACE is the damage it can do to your kidneys and other organs.  Same as Myeloma, really.  For the kidneys your doctors in the hospital look at the “creatin” number every day from the midnight blood tests (that’s when they do them at PSL anyways) as a proxy for that damage being done. On top of being already irritated, some of the tests (CT scan with IV contrast) can damage the kidneys as well, and sure enough in trying to nail down what the mold was and what it was doing my creatin shot through the roof.  All of a sudden I’m meeting kidney specialists who are assuring me we “probably” wouldn’t have to do dialysis and any damage “probably” wouldn’t be permanent while debating if it’s even safe for me to have a Tylenol.

How do you fix things before it gets permanent?  Tons of fluids.  Unfortunately when you have liquid in your lungs already from pneumonia the last thing you want to do is flood your lungs.  That diuretic treatment I’ve talked about before that makes you pee a lot, Lasix? Bad for the kidneys too.

Were that all I’m sure things would have gone smoother, but then out of nowhere I start experiencing excruciating pain in my chest that popped up one random day in the hospital and got so bad I needed painkillers to breathe.

One thing to note here, btw — if you are ever in the hospital and even remotely suggest to a nurse that you have chest pain, prepare for a lot of tests, a lot of monitoring and to meet all kinds of new and seemingly unamused doctors.  Immediately.  In my case it was diagnosed as periocarditis, an irritation of the sac surrounding the heart.  The CBCI doc rounding when this was discovered thought it was probably brought on by the chemotherapy, but either way they began treating it (I forget with what — was in there for two weeks and lost track of time) and within a day or so I was feeling better.

To deal with the mold, the infectious disease doctors (more specialists) wanted a certain level of anti-fungal medication in my system.  For some reason these drugs in pill form are super expensive so before I was discharged we had to make sure not only that my creatin (read: kidney irritation) levels were plateaued or dropping, but that I had the anti-fungals doing the work AND the pharmacies had more anti-fungals for me AND the other drugs I was taking wouldn’t interfere.  Apparently you’re on these for quite a while too.  So I get prescriptions called in and get discharged after two weeks at PSL.

Keep in mind the whole time I’m missing my daughter and freaked out about what she’s thinking — that’s a long time to be away from a 5-year-old, much less in a hospital she can’t even visit (14-year-old age restriction).  We FaceTimed every night, of course, but even sitting up and taking my oxygen out for a bit must still have been scary.  I’m still missing all of my hair, including my eyebrows, so me sitting up in a hospital bed in a hospital gown isn’t exactly the most comforting image.

On the bright side at least I knew, relatively, that I was safe.  So days pass, I felt a lot better, say 80-90%, and a’ discharging we go.

The next day we go to pick up my anti-fungals and … the insurance company refused to cover them.  For several thousand dollars of medicine too, otherwise I would have just eaten the cost.  Not thrilled since this was supposed to have been taken care of before I was even discharged, I let the doctors know and we planned to deal with it at a follow-up appointment a few days later.

I’m trying to get the timeline in my head right at this point but basically I got discharged on Friday the 29th of September here with a Monday follow-up appointment at CBCI. That weekend I felt fine until Sunday, when I started feeling exhausted and ended up going to bed when we put our daughter to bed around 7 pm.  Had the worst nightmares of my life that night as my health deteriorated throughout the night. Thankfully my father was able to give me a ride to CBCI but my wife had me take my in-hospital bag and laptop, because sure enough they re-admitted me that day.  Some of the CBCI personnel I know noted at later visits how bad I looked that day.

I actually thought that was kind of it again, really. I think we in general have this perception, perhaps due to the gravity of it all, that you know when the end’s come. In reality what I’ve learned and come to expect is just a slide into oblivion — the system overloads, the failures mount up and at some point it’s just too much.  Needless to say I was not in a good head-space at this point.

Spent another week in the hospital, more tests, and go home — pneumonia again plus more of the periocarditis-related issues.  A night later and I can’t breathe deeply without severe, stabbing pain and even with home oxygen canisters I had to take a few minutes after climbing stairs to catch my breath.  Freaked out but having oxygen and an appointment at CBCI that coming week I tried to grit through it but I was terrified — not being able to breathe is pretty awful, as are the thoughts that go through your head.  Is this my life now?  What do I do if one of these O2 cans fails, just die?

I emailed the oncology team the night before my appointment and told them what was going on and was admitted to the ICU the next day.  Queue tons more tests including a bunch of echoes which showed that on top of some liquid in my lungs I now had a large amount of liquid in the pericardium sac around my heart, a condition called pericardial infusion. Since there’s a limited amount of space there the heart can’t function normally which was apparently causing the pain and the inability to breathe properly, as well as my randomly going into atrial fibrillation (I think that’s how you say it).  So from 50-70 beats per minute my heart rate would suddenly jump up into the 150’s.

Oddly I didn’t notice when this would happen except that all fucking hell would break loose on the monitors attached to me and a nurse would come running.  It would self correct in about 5-10 minutes, usually before they could even get an EKG set up.

After consulting with CBCI and the specialists at PSL I ended up having surgery to fix the problem, which had ballooned into a full pericardial effusion, where the heart has so much fluid pressuring it that it can’t work correctly, and just short of a tamponade, when it stops being able to work).  The surgery was performed by this awesome guy named Dr. Parker with a ton of experience doing them and they took roughly a quart of fluid from the pericardium.  I now have a new 5″ scar between my belly button and my chest plus a hole where a grenade-shaped drain attached to the surgical site was attached for several days.  I’m on a few different antibiotics, antifungals and antivirals based on what they found when they analyzed the crap they drained out of me, but I’m alive.

Physically.

Mentally and emotionally I’m really struggling.  I relatively waltzed into 2017 by comparison, or as waltzy as you can get always knowing in the back of your head that you have a terminal disease. But after having 6″ of my colon removed, pneumonia twice, four rounds of salvage chemotherapy, mold in my lungs and now a quart of fluid drained from around my heart I just feel pistol-whipped.  I’ve lost a good 60+ pounds and look almost gaunt, a first for me, and not a good look combined with the lack of hair and eyebrows.  I get the chills out of nowhere, presumably from the weight loss, and energy drops I can’t explain.  I definitely do not feel right.

I guess I just feel like I’m cancer now, like this is some big waiting game.  Just when I’ve thought I had a grasp on my reality I’m shown this new level of horror and forced to face it and it keeps happening.  I’m tired.  God two days after I got out of the hospital the last time I had this awful Sunday where I could not stop either sweating or getting the chills and my skin was tingling and I was thanking whatever deity I could think of that I did not have a pistol in the house.  You just hit a limit.  But for some reason I just keep taking it, taking the pain, the heartbreak, the apologies to my daughter for not being able to be a more active or fun daddy sometimes.

Her hugs are about the only thing that helps, even though they break my heart.

I’m quieter now.  I’ve already experienced people not recognizing me physically thanks to this year but it feels different when I talk to people.  Awkward, a little.  I mean it’s always a lil’ awkward when you have cancer to talk to friends, we all know that, but this is different.  Like I’m an observer, almost, a third-party participant that doesn’t quite fit in.  Hard to explain.

On the bright side, if you can believe there is one, we got a puppy.  I really didn’t want a dog and my wife and daughter are allergic, but they found some hypo-allergenic cute five-month-old silky / Havanese mix. Not even sure I was leaving the hospital ever again I said yes, even though I prefer cats, but it’s worked out.  Beatrix is a bundle of love and a joy to just pet, and I think it’s what our family needed right now.  Besides pets pick owners, not the other way around.

And it’s not like I wasn’t already washing my hands like I had OCD with a kindergartner in the house anyways, right?

Lastly RIP to @CultPerfectMoms, someone I’ve followed on Twitter for quite a while now.  Her last blog post can be found here but she only lasted a few more weeks.  In a small way her struggle, and final acceptance, helped me when I was in the hospital to keep just taking a step forward even not knowing (or wanting to know) what was coming tomorrow to see my daughter again.  Thoughts and prayers to her family.

 

Jesus, ouch dude.

In a feat of typical Rich timing I managed to pick up a cold right before my IViG infusion yesterday when my immune system was at its most compromised.  On the plus side the cold seems to be moving pretty fast.  The negative?  every time I cough it feels like someone is stabbing me in the lower back.  Was up almost every hour on the hour last night coughing and then muffling a scream into my pillows.  Really wish I had some idea of what in the Hell is going on with my lower back because I have never felt pain like this before.

Oh and it was a damp evening thanks to the night sweats, which I detest. Pretty sure that’s coming from the Velcade portion of the PACE chemotherapy regimen — I used to get that all the time during year one when I was doing weekly Velcade shots.

So yeah, pretty miserable night, but I made it to work. Stoned off my ass on Oxycodone and DayQuil, but here nonetheless.

I met with my oncologist yesterday as well and, thanks to my numbers continuing to improve on this VTD-PACE regimen, we’re doing round four.  I also signed the paperwork at that meeting for my collected stem cells to be delivered here from Arizona as that is still the plan (a stem cell transplant) following this fourth cycle of PACE. I’m still concerned about the six week break between the end of round four and the start of the stem cell transplant, but sounds like there’s nothing to be done about it — Dr. Matous wants me as recovered as possible before I walk into the transplant.

Here’s to hoping that my numbers don’t go nuts like they did at the start of the year when I had to take a few months off chemo for that stomach surgery.

 

Many worlds I’ve come since I first left home.

Tomorrow I go back into the hospital for a week for the third, and most likely final, round of VTD-PACE. I’m not worried about the hospital stay, although that’s a pain in the ass, but more what comes after.

This weekend, my wife and daughter went up to Breckenridge with my wife’s parents.  I stayed at home, not really in any shape for outside activities or prolonged sun exposure. I spent most of that time thinking about things, which rarely is a puppydog and rainbows activity for me. And missing my daughter.

I dunno, folks.  Although I hadn’t even really recognized it, last week was my four-year anniversary of this nightmare.  I wish I had something to celebrate besides simply surviving, a verb that still seems so alien all these years later.  It seems to be the key word, though, especially this year and with these treatments.  Yeah, I’m still around … but in pretty rough shape.  I find it difficult, in fact impossible right now except in an abstract way, to even see the light as it were.  No matter how I slice it I’m staring down the barrel at several more hospital stays, doctors visits, tests … the list never seems to end. We’re off the rails now and in the “here be monsters” part of the map where the decisions are not written in stone like they used to be, and the choices make the earlier therapies seem like fun by comparison.

Another round of this?  Unlikely, but possible.  Dr. Matous never does four of these and rarely three, but this chemotherapy is all that has really made a dent in the last year so three it is.  A stem cell transplant next?  I’m at a zero level of excitement for that, but if it’s what the doctor wants I’ll certainly pay attention — I didn’t spend all the time and money to get top of the line healthcare to just ignore it.  CAR-T?  After the SCT, but apparently that’s got some serious hospital time as well.

If I think too long about it all I’m overcome with … well, I dunno.  It’s not depression, although there’s certainly some of that mixed into this.  What’s the word for an overwhelming sense of “fuck me running?”  Not sure.  I’ve felt for a while now like things have taken a turn this year, not necessarily in a good direction, and this is more of the same.  I think I’m in that stage a lot of patients seem to get to at some point where the treatments are so intensive both physically and time-wise that I’m rebelling, at least internally, at the toll it’s taking. I’m exhausted all of the time now and I have lower back pain so severe that even a double-dose of Oxycodone combined with some of Colorado’s finest isn’t getting rid of it, making getting up from a chair or couch an adventure in pain.

I have an MRI scheduled for my back tomorrow, and on the bright side, hey, I’ll get the good drugs to deal with the pain.  Generally when you answer the “what’s your pain at” with tears and a minor scream when you get out of the hospital bed they give you the good stuff.  So helloooooooo Fentanyl, it’s been too long.

I can’t seem to get back to a more carefree, happier headspace lately. I blame the steroids first and foremost, but it’s not as bad as it was before — perhaps because I know what to look for now?  I just bite my lip and boggle at the things my brain comes up with (bitter retorts, nasty replies, constant critical comments, etc.) and only let the good stuff come out of my mouth. But I can’t fake happy like I can fake politeness, and my emotional wall seems dangerously porous again. How do you really explain why you suddenly start crying out of nowhere when your thoughts stray to cancer and your child?  When you have to grit your teeth and clutch the armrests of your chair so tight you snap one in half to get your head back out of that particular hole?  How when most people daydream about summery stuff you’re idly pondering your own funeral?  It’s definitely a weird mental space to inhabit.

How do I understand and come to terms with the person I’ve become when the thoughts I have, as horrible as they are, come naturally?  I mentally go through a checklist of what to bring and do for this next week-long stint and without skipping a beat note to write a goodbye letter to my daughter.  A goodbye letter.  To my daughter.

Jesus.

You try it.  Maybe it’s just me but I don’t know how to deal with things like that without opening the floodgates.  Which is a good look on top of the bald head and hairless face, let me tell ‘ya.

But yeah, as my health has been much more precarious this year I’ve realized if I were taken suddenly there’s nothing but scattered writings and pieces — I need to know there’s more, a direct connection.  So I have some writing to do.

That should be fun.

Decided I want the Dead’s “Brokedown Palace” played at my funeral, although not in an obnoxious “OK everyone listen to this song” way. Just on loop until the festivities, as it were, start.  Probably quote this in the aforementioned letter as well.  Something powerful about this song that has always made it stick in my mind:

Fare you well, my honey
Fare you well, my only true one
All the birds that were singing
Are flown, except you alone

Gonna leave this brokedown palace
On my hands and my knees, I will roll, roll, roll
Make myself a bed by the waterside
In my time, in my time, I will roll, roll, roll

In a bed, in a bed
By the waterside I will lay my head
Listen to the river sing sweet songs
To rock my soul

River gonna take me, sing me sweet and sleepy
Sing me sweet and sleepy all the way back home
It’s a far gone lullaby sung many years ago
Mama, Mama, many worlds I’ve come since I first left home

Going home, going home
By the waterside I will rest my bones
Listen to the river sing sweet songs
To rock my soul

Going to plant a weeping willow
On the bank’s green edge it will grow, grow, grow
Singing a lullaby beside the water
Lovers come and go, the river will roll, roll, roll

Fare you well, fare you well
I love you more than words can tell
Listen to the river sing sweet songs
To rock my soul.

Yes I listen to the Dead AND metal that makes even metalheads cringe at its heaviness.  The 4,000+ songs on my phone are an exercise in schizophrenic music habits.

Anyhow I’m just scrapping the barnacles off the soul here and preparing myself for the hospital stay, so sorry for the negative spiral.  Sadly I actually had something I was going to end with here that was positive, but of course chemobrain ate it before I could get fingers to keys.  Sigh.  Well one bright note, the GOP has failed to destroy our broken but somewhat functional healthcare system, so at least my Twitter feed will go back to cancer-related stuff instead of the incessant political Tweets.

Little victories.

See you in the hospital.  I’ll be the one eating a Chicago dog with a mustard stain on my hospital gown.

 

PACE round 2 wrap-up and other precious moments.

Drip.  Drip.  Drip.

People who watch grass grow or paint dry have no idea how much more engaging it is to watch IV fluids.  Sitting at CBCI getting the monthly IViG and trying to find a path home with this blog entry, but there’s a part of me that wants to play the cancerous version of “how many licks does it take to get to the center of a Tootsie Roll Pop” (ancient commercial reference) with my IV.  Although with chemobrain I’d probably blow the count halfway through and then be pissed for a month.

“5,400,001. 5,400–“

Nurse: “Can I get you anything?”

“5,400,0–, err, 5,4 … GOD DAMNIT.”

First the good news. As hard as it’s been on me physically, the two rounds of this “kill it with fire” chemo are getting the job done.  From a peak in early May my M-Spike has gone from 3.9 to 2.8 (and according to an email I just got, 2.3 as of Monday), igG is down to 3,786 from 6,041 and my Kappa is down to 436.8 from 1,178.6. Not bad, although I had greedily hoped for even more drastic results for several reasons; perhaps most of all because if you are going to go through the hassles, the GI issues, the pain, the fatigue, being in the hospital for a week, the mustard stains on your favorite t-shirt from ordering gourmet hotdogs delivered to the hospital (what, that could happen to other people), etc., you want to get your money’s worth. The results were good enough, however, for my doctor to want one more cycle as per our meeting this past Friday.

Sigh.  I go back in on the 19th. If you work at Billy’s Gourmet Hot Dogs then congratulations, I’ll be paying for your next vacation.

At the meeting last Friday I also met Dr. Matous’s transplant coordinator, Dana, who gave me THE BINDER. Having gotten one from the Mayo Clinic when I did my first stem cell transplant and now one from CBCI I’m assuming this is standard practice, but for the uninitiated THE BINDER is a collection of information on what to expect, rules, diet, scheduling, yada yada yada.  I read through it this weekend and was amused to see that there was a special callout about marijuana in the rules — specifically, ixnay on the opeday during the hospitalization and afterwards, including edibles (that part makes no sense to me, but OK). Although they did separate out marijuana from the “recreational drugs” category, so that’s progress. I’ve been an activist for medical marijuana for several years now so seeing stuff like that makes me believe that attitudes are indeed changing at the higher levels, especially in healthcare.

You also can’t have nail clippers or a razor. You can however have people bring you restaurant food which seems odd since at the Mayo they were pretty adamant about not eating food that hadn’t just been cooked and served to you, but hey, if I can get delivery while in the hospital for three weeks then it will make things a lot more pleasant.  I’ve noticed that, much like staying in Vegas, no matter how good the food is (and PSL’s is pretty good) you still feel like you’re living in a Denny’s after a week or so.

Speaking of razors, when I entered the hospital for round two of this chemo I started losing my hair in earnest thanks to the first cycle. Irritatingly I only started losing it in the middle of my head, making me look like a poster child for those spraypaint your head infomercials for baldness, so with nothing better to do I busted out my shaving razor and shaved my head during my inpatient stay. As an encore all of the dark hairs fell out of the goatee section of my beard and mustache, so I shaved that all off too. Unfortunately I think in doing so it opened somewhat of a Pandora’s Box without me even knowing it that has fueled some of the depression I’ve been feeling lately. I think it’s a pretty common tale in the cancer world, but since only one previous treatment threatened hair loss (my first stem cell transplant in 2014) and it didn’t really happen I never gave it much thought.

Now I find myself staring into mirrors or purposely ignoring them; I feel like I look like Uncle Fester from the Adams Family. It reminds me a bit of year one when I was first coming to grips with this fucking nightmare while doing chemo during the day (Velcade shots) and feeling an intense isolation as I walked out of my office building when everyone else was going to lunch. Perhaps it’s silly but I find myself battling self-conscious thoughts, something I thought I had been done with by forty-six. I have to consciously look past the feelings of embarrassment now even though I know it’s ridiculous. Might as well get used to it, though, as with another round of this followed by a stem cell transplant I won’t have a beard again until around Christmas-time.  Grrr.

I imagine that seems a petty concern when you are facing a terminal disease. Honestly I never thought it would be a big deal to me, especially since I’ve had my head shav– err, shaved?  Shorn? Whatever, I’ve been getting the brain basket done with a #1 razor for a year or more and had a full beard since my goatee started growing back after the first stem cell transplant. It’s different than I thought it would be though, adding a visceral in-your-face reminder of this disease that I can’t avoid around reflective surfaces.  Didn’t see that coming.

I did, however, talk to my oncology team’s nurse practitioner about depression today. I’m reasonably sure, when I examine things from a distance, that I am in fact depressed. Duh, obviously, but I mean on a level where I would like to go after relief medically so I can function. After consulting with a few psychologists on staff, the oncologists want me to taper off of Lexapro, which I started when I was first diagnosed (suicidal thoughts, general depression) and start taking Effexor. Hoping this works since I was at the max dose of Lexapro and lately I’ve been feeling like it may not be working very well. Fingers crossed because I really do not need a healthy side dish of depression along with my heaping pile o’ cancer.  Especially heading into a gauntlet of some fairly hardcore regimens this year.

One way or another, one way or another,
One way or another, this darkness got to give.

Been listening to the Dead a lot recently (that snippet is from New Speedway Boogie, an old favorite of mine), partially because I’ve been watching this great documentary mini-series on Amazon about them and really it’s just been a while since they lead the mental rotation of what I feel like listening to.  I get in a Dead mood about three times a year and then binge on the live stuff for a week, which you can now download a fuckton of from iTunes. Which still seems weird and out of place to me, just like it does when I download old punk music, but we do live in a convenience-centric world now.

But I digress as usual.  Today at CBCI I also asked if I could get a “why” as to why we’re doing a stem cell transplant, especially when the first one didn’t really do much and subsequent ones are, as I was told when I was at Mayo, only 75% as effective as the first one. Not that I don’t trust my oncology team, but I’ve now been asked this twice by folks and neither time have I really had a satisfactory answer. If I’m going to deal with the incredible hassle, danger and three long weeks without seeing my little one I need to know for myself why I’m doing it beyond just a vague “to reduce my numbers.” Should have an answer next week as they are going to discuss this question at their Thursday meeting.

Thinking about transplants reminds me of a good stem cell transplant story, however.  Back in 2014 when I did my first one I moved my family to Scottsdale for several months and set up my laptop to Skype with my daughter every night (who was three at the time).  So the first night I get on Skype all excited to see Ariana who, after maybe one minute of talking to me, turns off camera to her mother and asks “How do I change the channel?”

Edit: Almost forgot. Found out an old friend was struck down with a brain aneurysm this past weekend and is fighting for his life. I’m not the praying type but if you can spare a few seconds to send some positive vibes for Rob S. and his family I’d sure appreciate it — his kids don’t deserve to grow up fatherless and I have no doubt he has a ton left to offer the world. Thanks.

Saved by the … 1970’s?

I’ve been somewhat avoiding this entry, as ridiculous as it may seem, simply because I’m scared, quite honestly.  Scared about seeing what I should, or want, or need to put down here.  There’s a stark reality to a word on a page.  Something CREATED that you can’t just stuff back into a box.

This is a travelogue, if you will.  Which makes me a tour guide of … myself?  I’ve always found that an interesting viewpoint, whether as a reporter or editor or blogger.  If you’re reading this you’re on a journey with me, and perhaps similar to the anticipation we all get wondering if the traffic you’re stuck in was born just over the hill in smashed cars and blood on the pavement, I have to think in the back of someone’s head reading this blog there’s a knowledge of what we are going to find over the hill.

Here’s the difference between you and I, however.  You read these words, their order and meaning and message devised in my head and placed here as best I can.  Perhaps you get hope from them (that would be a feat), or more likely some information you didn’t have about Myeloma.  Maybe you know me and this is how you stay updated.  For some I know there’s an empowerment in reading and interacting with others sharing their fate, which is why I make sure to answer (I may miss 1-2, sorry) every comment personally.

But for me this thing is something totally different.  It’s truth.  It’s a love letter to someone you’ll probably never meet.  It’s comprised of words once spoken outloud, given birth, that become unavoidable, and once created I can’t shy away from it.  Just the opposite, I re-read these entries ad nauseum.  If they make me tear up I just keep doing it to inure myself, to explore, to learn, to understand me through this process.  To remember — it’s weird going back two years and reading.

And hey, side effect to chemobrain, I have such a hard time recollecting certain things now it’s like reading a whole new blog, laugh.  I should start re-reading my favorite authors come to think of it.  Anyways …

Long way of saying why I haven’t updated in the last few days.  That experience can be so taxing that the anticipation of it can be too much sometimes, especially when my number one method of coping is to compartmentalize and seal until I feel it’s safe to open the vault door and peek inside.  These entries are often the emotional equivalent of blowing open all the cell doors in a Brazilian prison and seeing what happens.

Don’t ever Google “Brazilian prison riot” by the way.  That’s one of those “what’s been seen can never be unseen” parts of the Internet.

Wednesday morning I met with Megan, the nurse practitioner on Dr. Matous’ team (and also with another member of their team sitting in who works with Sonja, the team’s nurse navigator — each doctor at CBCI has their own group of folks).  Megan actually is the reason I’m at CBCI — she’s a friend of a friend’s sister who related to her some unsatisfactory experiences I had had with my former local oncologist and got me in to see Dr. Matous.  Not only is she as sharp as they come on Myeloma but there’s also an underlying level of tangible “caring” that I rarely see in medical professionals.  I consider myself lucky to have met her, quite honestly.

So we have a 45 minute meeting to discuss some things which I’ll save you the narration of.  Here’s some “highlights,” although that’s certainly an odd term for it:

  • We are definitely in the danger zone.  Queue Archer pestering Lana.
  • We are going to continue with the Dara/Rev treatment for a few more weeks (4?) to get some more data and because it’s seemingly very effective on two of the three metrics you watch with my form of Myeloma (IgG, M-Spike) even if the Kappa is going the wrong way.
  • We’ll be doing weekly appointments with a doctor and weekly Myeloma tests now (monthly before).
  • PET Scan time.  Only had one before so not entirely sure what this tells us, but that was the plan BEFORE I told her about some of the pain I’ve had bone-wise lately (skull, lower back, etc.) and once related became even more urgently needed.
  •  The next step for me if this is not sustainable is probably going to be something called PACE (we’ll discuss that in a minute).
  • After Dara, or PACE, I cannot be off chemotherapy.  Every time I have my numbers go to Hell so fast you’d think they had a VIP invite.
  • The step after that *may* be some sort of CAR T trial.  CBCI is most likely going to have one but given the previous bullet point I may need to travel for one to get the timing right — again I cannot be off chemo given what we’ve seen so far.
  • There’s no good way to prop up hemoglobin counts like you can with white blood cell counts, apparently.  i.e., Neulasta, IViG, etc. There used to be and it was a standard of care, but due to heart issues it’s use was severely restricted.
  • An autologous stem cell transplant (someone else’s stem cells) may be on the plate for the future.  Risky and a huge time commitment among other things.  Didn’t even know they did those for Myeloma.
  • I managed to make not one but two medical professionals tear up with one comment.  Basically that I just needed 13 more years, even if it was slogging through chemotherapy 24/7 to get there (we had been talking about living on chemo for the rest of your life versus not even a maintenance regimen).  From knowing me Megan knew pretty much immediately that that was when my daughter turns 18 and explained to the other nurse in the room, who has a young child like Megan and I both do.
  • One of the reasons my cancer may be so frustrating to deal with chemo-wise is perhaps there are not one but TWO clones at work.  That could explain the weird way the Kappa is not marching in step with the M-Spike and IgG.  First time I had ever heard that was even a possibility.

As I remember it those are the main points we hit.  Couple things to dig into from that list.  First, Megan was telling me how she had talked to Dr. Matous the previous evening and he knew my numbers off of the top of his head.  She let me know that’s not the norm and that he cares about me.  That may seem like a very small thing in a very scary list of things, but it meant more to me than anything else said yesterday.  I have a hard time buying that many medical professionals even read this but man, you want a patient to believe in you?  That’s how it’s done.  A little caring moves mountains.  You want someone fighting for you in this, not doing their day job, capiche?

Secondly, PACE.  I checked with a friend with Myeloma doing significantly better than I am and that was news to her as well.  I also don’t recall that one off the list in any doctor’s office of potential treatments.  I’m reasonably sure, since I’m somewhat well-read in Myeloma, that there’s just not a lot of talk out there on this one and doctors don’t even mention it given why it’s used.  The key word I kept seeing over and over again is “salvage.”  It’s a salvage chemotherapy, so in a way a hail Mary pass.  At least that’s how this feels.  We’re not calmly sitting around pondering quality of life issues over IV versus oral chemos and what’s hot now, we’re calling the National Guard and getting ready to light up Berkeley like the Branch Davidian compound in Waco.  It sounds like there’s some variance in the exact cocktail used with this (Velcade or Thalidomide, for example).

So DT-PACE:

  • P = Cisplatin or Platinol.  Mmmm, 1978.  Cisplatin (actually discovered in 1845) is licensed for medical use.  1978: the Sex Pistols play their last show, the Blues Brothers perform their first (on SNL), Van Halen and the Dead Kennedy’s debut albums, and most importantly Iron Maiden hires Paul as their lead singer and records a 4-song demo including Prowler.  Best band ever.  EVAH.
  • A = Adriamycin or doxorubicin.  What year did Nixon resign, Cher file for divorce from Sonny, Neil Peart join Rush and the Ramones perform for the first time at CBGB’s?  1974.  Those two drugs are the same, as far as I can tell; Adriamycin was a trade name for doxorubicin.
  • C = Cyclophosphamide.  Set the Wayback Machine for 1959, Peabody.  Jimmy Hendrix buys his first electric guitar, my dad’s favorite Buddy Holly goes down in a plane crash in Iowa along with the Big Bopper and Richie Valens, and Cyclophosphamide is approved for use.  This one I’ve had before when I first was diagnosed as part of the “CyBorD” triplet (Cyclophosphamide, Velcade (Bortezemib) and that wonderful (not really) Dex.
  • E = Etoposide.  Welcome back to ’83, when Thriller debuts at #1 on the charts, Mick Jones is kicked out of the Clash, the members of KISS take off the makeup, the first Phish show happens and Etoposide hits the market.

The “DT” is Dex and Thalidomide (predecessor to Revlimid/Pomalyst) but it seems like there are variations on this theme (using Velcade instead, etc.).  Only recognize a few of those names?  Yeah me too.  I wasn’t sure what Megan meant when she said it’s an old-school chemotherapy.  More like 800 of them.  At once.  96-hour infusion, only can do this once or twice due to the severity.

In looking at that list maybe I should show up with a giant afro and bellbottoms humming some BeeGees.  CB?  Still got that pink afro wig?

How’d we get here seemingly out of nowhere?

I know the answer, a combination of semi-effective treatments and a few ill-timed but necessary chemotherapy holidays.  I’m still suffering from the whiplash, however.  I went from the, for lack of a better analogy, “softcore” chemotherapies to the “XXX scar-you-for-life and terrify the kids while it kicks your dog” chemo with little to no warning.  There are so many questions this is raising and emotions churning and frothing like some stormy seas out of a novel where people say “yarr” and the great white whale appears on the horizon that I don’t even know which way is up anymore.  It’s given birth to a few feelings, however, that stand out:

Yarr.  I just wanted to say that again since it’s a joke between my daughter and I.

“Knock knock.”

“Who’s there?”

“Interrupting Pirate.”

“Interrupt –“

“YARRRRRRRRRRR!”

Cracks me up every time.  Sorry, your list:

  • I’ve never “feared” my cancer.  That’s an odd realization.  I thought I did, for sure.  Now I fucking do.  So if someone was just trying to make a point with this to not take cancer lightly, I get it.  Seriously.  No I will not start going to church, please stop asking.
  • Taking that a step further, I’ve never felt the grasp of death before.  I think I know more about impending doom than non-terminal peoples after four years of Myeloma, but there’s a big difference between having a concept in your head with some nebulous future date (“eventually this will probably cause my death”) and what I feel now.  It’s gone from 2-D to 3-D, if that makes sense?  I feel like we’re in the “get the paperwork in order” phase of things and I can’t escape that feeling.  Not that my thoughts on it have changed at all (only really care due to Ariana and her future, yada yada yada), but I thought I’d have a bit more time to get there.  That feeling is now gone.
  • There’s a very disappointing jealousy I’ve hid from everyone for a long time.  I get the feeling all of us doomed do this even though we don’t talk about it, because it makes you feel shitty.  It’s being jealous of survivors, those for whom all of the chemicals and years worked.  I hate that because it makes me feel petty and selfish, which is logical.  It’s just so hard reading about how someone survived on Revlimid for 20 years or is now in remission or what have you when you aren’t.  But it’s a full disclosure sort of blog, so sorry for admitting what most of us feel but won’t talk about.

So that’s where we’re at.  Well I’m at; hopefully you, my friend, are not here with me except as an observant whisper in the dark.  I won’t be dropping dead tomorrow, I doubt, but in four years we’ve torched quite a bit of the new therapies and standards and we’re worse off than when we started.  What’s left looks and feels pretty grim to me right now.

Sure there’s hope.  I’m still fighting along with the best medical team on the planet as far as I’m concerned.  I’m taking the drugs, making all of the appointments — ask around and folks will tell you those are the danger signs of giving up (no shows, not taking the drugs, etc.).

I figured something else out today.  My father, upon hearing my diagnosis four years ago, has mentioned a few times since that that was the only time he’s seen me scared.

I realized today I’ve just learned to hide it better since then.

PS:  You know your cancer’s rare when the spellcheck keeps correcting it to “Melanoma.”

Watch, I’ll have that now too and we’ll all go “how ironic.”  Knock on wood.

Last thing that I just recalled.  Don’t read more into this than is necessary but with all these thoughts of death and the timeline feeling like it’s shifted I came up with what I want on my tombstone.  “End of Line.”  Sure, put some family stuff above that, but that needs to be on there.

Tron dork, what can I say.

Deja vu — ouch!

You know when you are at your desk Monday morning chasing Percocets with a soy latte that it was either a really good, or really bad, weekend.

Friday my white blood cell and other counts were bad enough that Dr. Matous and his nurse practitioner agreed that if we’re starting a new Revlimid cycle there’s going to be a problem at my numbers and the current dosage.  As a result they decided to change my Revlimid to 15mg every other day (from 15mg daily) and got me approval for a shot of Amgen’s Neulasta, a $7,000 drug that stimulates the body into making more white blood cells.  The last time I had this, or something similar, was when they were harvesting my stem cells for transplant 3 years ago, although I think then I had Neupogen.  As I recall, the primary difference as I understand it is Neulasta lastas longer.

When a typo becomes a bad joke on the next Geraldo.

Minor problem arises … the insurance companies apparently won’t approve a Neulasta shot within 24 hours of chemotherapy.  Solution?  Either drive back to CBCI on Saturday or wear an injector that, 27 hours later, will automatically give me the shot.  Not wanting to drive all the way downtown AGAIN I opted for the injector being stuck to the back of my arm.  They look, and are about the size of, a container of dental floss:

onpro-device

When they put the injector on you it pokes through the skin and then starts blinking green.  27ish hours later it beeps and then injects you.  Pretty wild stuff.  Kind of nerve-wracking too, though … I mean it’s $7,000 of medicine just taped to you on the hope it works right.  What do you do if it screws up, call the insurance company on Monday for another one?  Felt kind of anxious walking around with it, as well as anxious that it’d start and I’d watch $7,000 of Neulasta run down my arm instead of into it because I had bumped it once or twice.

In the midst of all of this going on, however, I forgot how painful this drug can be.

It’s hard to describe what these drugs can make you feel like.  I had severe bone pain in my back, especially lower back, hips and legs, as well as a shooting pain in my skull.  I’m assuming this is somewhat similar to what the bone pain of Myeloma is like when it gets to that point?  Either way it SUUUUUUUUUUCKS.  I don’t even have a comparison I can make to help you understand this, but it’s easily the worst pain I’ve ever had in those locations.  When I had the Neupogen during my stem cell harvest I was just laying there and for all I know they even gave me painkillers.  Walking around in your normal life though?  Yeesh.

They tell you that for whatever reason Claritin helps with that pain, but if it did I didn’t notice.   I slept about 11 hours Saturday night and then the pain started.  By Sunday night I was in rough shape and started raiding the household stash o’ Percocets (which worked really well, btw).

So here we are, low on sleep and high on opioids.

Which incidentally is a great country music song title.

Nothing really pithy to get into today.  Days of pain generally force a recognition of my  situation that, as I’ve talked about before here, I mentally deal with normally by  distracting myself.  I was so goddamn tired all weekend, however, that I didn’t even have the strength to do that.  My wife, however, was blown away by how helpful I was to her on Saturday, so that’s a good thing — she had a gall stone attack Friday night and was in the ER from about 1 am to 12 pm Saturday and in bad shape pain-wise.  My continuing efforts to make up for the last several years of DexRich are in fact working (at least until the next major fail), which makes me happy, and having had my gall bladder already removed for exactly what happened to her this weekend I was able to offer some solid advice and doctor referrals.

Ahh, that was one thing I wanted to get into today.  So Fridayish I did something I rarely do, which is interact on Twitter with some of the more well-known names in Myeloma. I appreciate that it’s useful but I seriously hate Twitter.  As a writer, even a hack, it’s depressing how much Twitter just eats the beauty of language and the art of phrasing things and turns adults into people who substitute “u” for “you” like a 16-year-old texting someone just to make a character limit.  Regardless, I was, respectfully, calling out someone over some information on Dex on a slide from some Myeloma-y conference.  In seeing the slide I realized that it was just the usual boilerplate stuff I see and once again showed no real understanding of what patients go through, at least to me.  Having had my life and who I actually am pretty much rewritten by Dex it’s a sore subject with me.

Again, zero disrespect intended towards anyone involved but look at the pic link in the tweet I’m replying to and read the columns on that Powerpoint slide.  Now read this, a quote from drugs.com (my 5 seconds of Google research):

The most commonly occurring side effects have included alteration in glucose tolerance, behavioral and mood changes, increased appetite, and weight gain; the incidence generally correlates with dosage, timing of administration, and duration of treatment … A wide range of psychiatric reactions including affective disorders (e.g., irritable, euphoric, depressed, labile mood, and suicidal ideation) psychotic reactions (e.g., mania, delusions, hallucinations, aggravation of schizophrenia), behavioral disturbances, irritability, anxiety, sleep disturbances and cognitive dysfunction (e.g., confusion, amnesia) have been reported. These reactions have been reported in adults and children. In adults, the occurrence of severe reactions has been estimated to be about 5% to 6%.[Ref]

Frequency not reported: Depression, affective disorders, anxiety, emotional instability, euphoria, insomnia, mood swings, personality changes, psychic disorders, confusional states, anxiety, abnormal behavior, irritability, aggravated schizophrenia …

So to preface what I’m about to say, I know NOTHING compared to whoever @IMFnurseMyeloma is.  She’s a Mayo Clinic nurse who deals with MM all the time, I’m just a member of the MM doomed tribe.  That being said, the “Managing Steroid Side Effects” of her slide is side-effect management for the stuff to solve side effects from pretty much every drug I’ve ever taken — take with food, take some stomach stuff if you have “discomfort.”

I’d also note that in the drugs.com article they list a lot of what I went through, and others I’ve talked to, as only happening in 5% of patients.  Since they’ve happened in 100% of the people I’ve talked to I’d argue that statistic.

What I won’t argue is a simple bullet point addition to that list — TALK TO SOMEONE ABOUT THESE SIDE EFFECTS THE MINUTE YOU ARE PRESCRIBED THIS DRUG.  You may never experience the emotional and psychiatric side-effects but I, and others, have been broken by them.  Be informed, OK?  Suicidal thoughts, total lack of sleep, personality changes, irritability, emotional instability, even weight gain and the psychiatric damage that can cause — those are serious things, folks.  Those are what I call “suck-starting the shotgun in the basement” side effects. That’s real, and I’ve experienced it and not even realized at the time that some of these bizarre thoughts and reactions were being caused by one of the drugs I was taking and not my situation (which is hard to separate).  And since a lot of times you don’t see the onset of these (i.e., gradual changes), you may not even realize it.

For those without this experience, try to imagine you are diagnosed with cancer.  While survival rates, thankfully, seem to be up across the board for most types of cancer, that’s still probably the most serious, and depressing, news you’ll ever get.  In a 2012 study I found online, the risk of suicide spikes in the weeks immediately following a cancer diagnosis by 13 times in the first week and 5 times twelve weeks later.  It’s still three times as likely a year later.  Also thanks to the deplorable state of insurance and healthcare combined with drug pricing issues, add all of the financial issues that cancer victims have to deal with.  Then to ice this cake, add a drug to it that’s going to make you retain water so your weight goes up (another giant source of depression and one that can become a brutal circle).  You are experiencing the entire spectrum of negative thinking due to your diagnosis and how serious life just became, and now you’re thrown onto the rollercoaster of Dex.

And that’s not a focus, much less even a discussion point on the bullet list?

Err, eeek.

I can say for myself that the entire reason I began therapy was due to having suicidal thoughts over my diagnosis.  Which a lot of us do, honestly — who wants to live in pain / fear for their life?  I spent a decent amount of time pondering whether, since children have a tendency to “reset” their memories around age five, if it would be better to step out of the picture and let my life insurance take over as daddy.  Ultimately she’s the reason I didn’t pursue this line of reasoning and instead sought out professional help.

My point is simply that a little talking to your provider about how to spot and deal with the mental component is important — a lot more than “take with food,” which while I’m certainly not a doctor I can say with a lot of confidence will not save your marriage when you have become such a bitter, irritable jackass that it and every other relationship you are having is falling apart.  Again, no disrespect to whoever created this slide, it just reads like everything else I see in cancer, which is medical personnel downplaying the serious aspects of what we’re dealing with.

 

Also, given that half of my Twitter feed is articles about the importance of patient-provider communication and patients’ input on treatment, I wonder sometimes if it’s stuff like this that helps cause that divide.  Why isn’t talking with a mental health professional part of the initial diagnosis process?  Maybe it is in places, but personally I think it should be across the board — the absence makes you feel like that part is ignored or not a “real” problem … but I’m here to tell you it’s as real as it gets.

And to cop lines from the UFC advertising, apparently.

Also if you are a provider, think about the impact having someone ready to talk to on diagnosis would have.  Here’s a patient about to get the worst news of their life (or close to it), and, “um, see ya’ and best of luck with that!  We’ll start up poisoning you on Thursday.”  Now imagine how much more comforting if someone was there as part of an active team (not just if you find out they exist) ready to explain how the diagnosis, and some of the medications, may affect you and what to look out for and to check in at set intervals or as needed.

To me that’s just a smart choice that costs nothing.  How many times has an on-staff social worker / therapist / etc. been sitting in their office doing nothing while 2 doors away someone got the “you have cancer” spiel?

Seeking mental and emotional healthcare, especially prophylactically, is not a sign of weakness, emasculating, something to be embarrassed by, etc.  It’s not an admission of being crazy or even that you have a problem — it’s just smart planning.  Please don’t ignore this aspect of treatment.  Every oncology office I’ve been to has some sort of help along these lines, usually free (your mileage may vary of course), specifically to deal with this stuff, although they don’t always let you know about it.

Use it.

Anywho, enough of me playing Surgeon General today.  Not even sure who ours is right now, come to think of it.

With Trump in office it’s probably Doc McStuffins.