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.

 

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.

The bad sevens.

Not even sure where to begin this.

I guess just the facts to start.  Tuesday night I started feeling a bit run down with a tiny productive cough and some minor nasal congestion.  Given all the craziness of the last two weeks (IViG, blood transfusions, bone marrow biopsy, the usual weekly chemo, the Neulasta shot, etc.), I was inclined to think it was just the aftershocks of all of that.  Wednesday I woke up and felt like Hell … low energy, body aches, the nasal/chest congestion.  Went to work but came home at lunch on my last personal drop of energy and slept until about 10 pm.  By then I had developed the sweats, chills and a 102.3 temperature.

Waiting until morning we contacted CBCI and they gave me an appointment, but after waiting an extra 30 minutes in their office past my appointment time we realized they were so slammed that I might as well just go to the ER downstairs.  The ER did the usual stuff (chest x-rays, cultures, blood tests) and decided I had pneumonia again, so the wife and kiddo went home to get Ari to pre-school while I waited for the inevitable admission to the hospital.  They brought me up to the oncology ward and I’ve been here ever since, fighting what they now tell me is the flu.  Let’s see … sweats, chills, full body pain, cough, nasal congestion, zero energy (due to damn near zero hemoglobin again), nausea and the kitchen sink.  Thankfully the wonderful nurses here have been a big help even slammed (I got the last bed in this ward, which for whatever reason I always feel guilty about), and the Dilaudid and now Oxycodone (Dilaudid works great but gives me a headache at the end of every dose) have gotten rid of the pain.

They’ve done nothing for my mental state.

Even though I was forced to skip chemo this week my counts are still really low, so I’ve had 3 transfusions in as many days.  More disconcerting, however, is I met with my oncologist today at the hospital to discuss my treatment and bone marrow biopsy results from Monday.  Since the beginning of March and this Daratumumab / Revlimid / steroid therapy my M-spike has gone from 4.4 to 3.5 in just over a month.  That’s great, right?  Problem is my kappa is going the opposite direction and I get the feeling that the doctors are a bit confused by that (apparently they usually march in the same direction).  Not sure where my IgG is but I’ll try to find it.  Anyways here’s the scary part — my plasma is 90%, according to the bone marrow biopsy.  As I understand it what that means is in the sample they took from my pelvis on Monday placed on a slide, 90% of the white blood cells are monoclonal (bad) plasma cells.

My oncologist didn’t say it, but I’ve done enough reading to know that that’s probably why my counts are so bad — the good blood cells are being crowded out by the bad ones.  He wants a few more data points so we’re going to continue this for a few more weeks but chances are he is going to change strategies soon.

I’ll be honest, I’m kind of heartbroken by all of this.  I’m just so tired of it all.  I’ve been slogging through this fucking mess for what, 4 years now?  And there hasn’t been a break.  Chemo after chemo after stem cell transplant after chemo after chemo ad nauseum.  Barely a partial remission, and when I took a two month chemo holiday this year for my surgery my numbers almost doubled.  I feel like this burden just gets heavier, and heavier, and heavier.

So here we are, realistically at what could be near the end of the journey I’m guessing?  I have 90% bad cells and my counts are low, so where do I go from there?  Now I have no idea.  And you know what?  If this is it, I’ll be honest — part of me doesn’t even care.  I read about these folks who have done 20 years with Myeloma and I don’t know that I have that strength even if I’m given the time.  I just need 13 more years to get Ariana out of high school and I feel like that’s being taken away now as well.

I can’t even mentally go there right now, I’ll be out the goddamn window.

Just once, I would have liked to had a blood test that showed whatever we were doing was working amazingly well.  But man, not one in four years now.  I can’t describe how brutal that is, week in and week out, to try to summon just a tiny drop of hope and watch it get squashed every time.  I’m tired of doctors and nurses and hospitals — I like the folks but seriously.  I can barely even work now I’m down here so much.  Sick of being afraid to kiss my daughter, and having to wash my hands like I have OCD.  The dumb thing is the IViG at least has been working — I haven’t really been sick since I started it except for this stupid flu (which I’m not sure IViG could deal with anyways).

I’d like to think I took a lot of this in stride.  I had to give up diving and my path to become a diving instructor, a real passion of mine, and even though I knew it was fucking dumb I kept up hopes that someday I could safely do that stuff again with my immune system.  I go to most of my appointments alone because even though I appreciate the support I don’t want to put this cloud over other people.  Plus I’ve found having folks there at times can make the emotional wall crack, especially if it’s my daughter.  I didn’t really even want much from life anymore — time with the people I care about, their health, and some quiet time to ponder things.

I give up, this entry is going nowhere.  Sorry.  I guess this is where I’m supposed to get religious as a cancer victim now, right?  Yeah.  Problem is the only God in my world is Random Number Jesus and he just keeps rolling the bad 7’s for me, one after the other.

Oh.  Have a positive attitude Rich!  Keep your chin up!

Yeah I’ll get right on that.

My hips are a code violation.

Eventful week, and not really in a good way.

So Friday I went in for the weekly Dara appointment, but there were problems with my CBC (“complete blood count”) results.  Namely that my red blood cell count was in the danger zone.

giphy

Sorry, Archer joke.  Here’s what the danger zone looks like, apparently, with my number and then the “OK” range in parenthesis and a description of what each one is (that I shamelessly copied/pasted from webmd.com):

  • Hematocrit 18.8% (40-54%).  This test measures the amount of space (volume) red blood cells take up in the blood.  The value is given as a percentage of red blood cells in a volume of blood.
  • Red Blood Cell 2.14 10 12/l (4.4-6.0 10 12/l).  RBC’s carry oxygen from the lungs to the rest of the body, and carry carbon dioxide back to the lungs.  If the count is low (anemia), the body may not be getting the oxygen it needs.
  • Hemoglobin 6 g/dl (14.2-18 g/dl).  the hemoglobin molecule fills up the red blood cells.  It carries oxygen and gives the blood cell its red color.  The hemoglobin test measures the amount of hemoglobin in blood and is a good measure of the blood’s ability to carry oxygen throughout the body.
  • Platelet Count 78 10 9/l (150-400 10 9l).  Platelets are the smallest type of blood cell.  They are important in blood clotting.  When bleeding occurs, the platelets swell, clump together, and form a sticky plug that helps stop the bleeding.  If there are too few platelets, uncontrolled bleeding may be a problem.

Anyhow, the doctors decided to keep the Dara appointment but prescribed two bags of blood.  Thankfully I ran my errands the day before, since that added four hours to my day.  Easter weekend itself wasn’t horrible although I was exhausted all weekend even with good sleep.  Saturday my daughter Ariana had belt testing at her TKD gym and did great, then Amy’s parents came up to celebrate Easter since my mother-in-law had to fly out Easter Sunday.  They set up an egg hunt outside which she loved.  Sunday we met my parents in Cherry Creek briefly after lunch at one of our favorite seafood restaurants, Blue Island Oyster Bar.

So Monday comes around and it’s IViG time.  The CBC from Monday looked about the same as Friday’s, just minor improvements.  Due to my numbers last week my doctors asked for a bone marrow biopsy, my fourth now, to give the doctors a better picture of what’s going on with my disease.  Not wanting to inconvenience anyone I opted for no anesthesia and just did it with a local — really didn’t hurt much at all and was vastly quicker than doing it with the fun drugs in the hospital.

Do those holes grow back, by the way?  I need to ask my doctors that.  Feel like my hips must look like Swiss cheese now.  Seeing as how my hips are, as far as I know, load-bearing, I’m pretty sure I’m not up to code anymore.

Had trouble sleeping last night, although I was in a great mood last night.  Oddly I think the non-Dex steroids might be IMPROVING my mood.  Lord knows I had enough between Friday and Monday, Jesus.  Even a good mood couldn’t keep the pain away though — spent most of the night uncomfortably sitting at my home office desk and fighting off what seems like a minor cold and a minor temperature (99, at 101 I’m supposed to call the doctor).  Came to work today since I missed Monday and will miss Thursday (Dara day this week) but popped an Oxy when I sat down and I’m just trying to relax and not move my hips.

Sorry for the inelegance of the first part of this entry — just sort of core dumping the last 4 days and I can’t think 100% clearly today thanks to the body aches and pains.  I wanted to jot some notes down about just that, however.  I’m wondering, as I’m sure a lot of the doomed do, if it’s possible to separate out what is causing what pain-wise.  While driving to work this morning I was thinking about this — whether the bone pain I am feeling is the Myeloma and not just side effects from something else.  Hard to know — I’ll ask the doctor but I’m guessing that there’s no way of knowing.

I’ll be honest, I’m a lil’ freaked out.  Just a little, mind you, but there’s something truly un-nerving about watching parts of your body and its systems fail.  The irony that what’s beating me up so bad (presuming this is chemo drug-related) is actually working so far hasn’t escaped me either.  It would be nice to catch a little break here — I have yet to really have phenomenal results from any of the five or six treatments I’ve done so far, which really is a bit scary.

So is the NOT knowing.  Which drug’s working on me?  Revlimid or Dara?  That’s the problem with so many variables.  I was demo’ing a new app on my iPhone last night to help me track dosages for hospital and doctor visits since I can’t remember all of this stuff, and the sheer number of things I take always makes me wonder how you really know which one’s putting in the real work.

Anyways it will be interesting to see what they do Thursday with my Dara treatment.

Marsha Marsha Marsha!

Man I feel like I got hit by a truck this week.  No idea what in the hell is going on but it’s like side-effect-palooza around here.  In no particular order:

  • Heart/chest pain.  This is the scary one to me.  I can’t tell if I’m having heart pain or some seriously Satanic heartburn.  It’s right at the top of my chest underneath my breastbone, hurts like the Devil for 5-10 minutes, and sometimes I can banish it with drinking cold water (sometimes not).  When I was on Velcade back in the day I used to have to take Prilosec to combat some side effects so I started taking that again, but I’m not 100% it’s a GI thing.  Will talk to my doctor Friday, although I’m pretty sure that means it’s time to break out the EKG machine.  Which I don’t mind, but the nurses at CBCI hate the combination of my chest hair and the not-really-sticky-whatsoever EKG pads.  Not quite as much as I do when they RIP THEM OFF LIKE A CHRISTMAS PRESENT.  Actually they’re pretty good about that stuff, I just thought that was a funny image.
  • Body pain.  I’m thinking this is Xanax-related.  I had my sleep schedule pretty dialed in during the last few chemos but every time I start a new one, as some of you well know, it’s time to figure it all out again.  I haven’t been able to sleep like I used to with past chemotherapies on this Dara cocktail so I started popping a Xanax on really bad nights again (I think this new steroid is really messing with my sleep), but then I wake up and my ENTIRE body hurts.  It gets worse through the day.
  • Other random things — minor neuropathy in my calves, exhaustion, temperature.  I may just be coming down with something too.  I’ve noticed I’m so much more aware of my body after four years of chemotherapy and everything else that I can usually point to something and say “yeah, think I’m run down because I’m fighting something off and my system is just taxed” or the like.  Either way something is beating the hell out of my immune system as can be seen from the CBC results.  At this point I’m curious if they’ll do my infusion Friday, which opens up a whole new can of worms — I missed a bunch of the clinical trial doses of my last regimen due to having pneumonia FOUR TIMES during it and obviously that’s not a positive (and also why I’m now on monthly IViG).  I’d really rather stay on the chemo drugs and try to get this goddamn cancer beaten back a bit than be sick.

I went to bed a few hours earlier than normal last night and proceeded to wake up all night long, sweaty and confused as to what was waking me up.  Like 10+ times.  THAT is what the Xanax used to stop, but I refused to take any last night to give myself a break.  Thankfully I’m heading home in a few hours for the day to hang with the kiddo while my wife gets some stuff done, because the thought of sitting here for another seven hours seems like a Herculean task today.

An interesting thing about Xanax (besides the fact that some dumbasses actually use the stuff recreationally) is that you can build a tolerance.  I used to take 0.5’s but noticed they weren’t helping this time around so I asked for 1.0’s.  The 0.5 aren’t working for beans, and the 1.0’s give me a hangover worse than my worst next-day in college.  Except for that one tequila “why is this pebble embedded in my nose night” from undergrad in SoCal, but that’s another story.

As a cancer victim, you (well me, but others I’ve talked to about this agree), are constantly scanning and analyzing every new pain, twitch, bump, skin aberration, spasm, sleepless night, thought, etc.  Is it a new cancer?  A new side-effect?  My cancer doing something?  The drugs working hard (I know this is a myth but I’ll admit sometimes I hope this is the case still) or not working at all?  Am I sick again?  Etc. etc.  I get a lot of lower back pain and I’m always worried, due to having Myeloma and knowing folks who have had vertebrae implode due to the osteoporosis Myeloma can cause, that I’m always one “picking up something heavy” from having my back shatter.  Especially since the only PET scan I ever did showed my lower back as a highlighted spot (and my hip and a couple of other spots where there were bone lesions from this).

Anyhow nothing too philosophical today, just an update since this has consumed most of my thoughts lately.  And don’t get me wrong, I’m actually doing pretty well mood-wise still (feel like I have to keep assuring that), just feel like hell.

Imagine that, cancer sucks.  Someone call the New York Times!

Oh and bonus points if you know what the title of this entry is from.  It’s not a contest, just a generational thing at this point.

Dara week 4-5 thoughts.

In psychology there’s a concept called the “ironic process theory,” or alternatively the “white bear problem,” where an attempt to NOT think about something makes thinking about it more likely.  For whatever reason, unless put directly to the test (i.e., “Rich, DO NOT think about cheesecakey goodness”) I’ve somehow managed to turn the ability to not think about things into the coping mechanism I rely on most of the time.  Perhaps too much, as it generally involves focusing intensely on something else like a video game, etc. But I’ve been doing it for so long I don’t remember a time when I couldn’t just automatically tune out my parents going off on each other as a child, whatever anxiety I’ve had through the years, and certainly all of the fun thoughts brought on by the BIG C in the last four years.

I had some trouble lately doing it last week, unfortunately.  Thoughts snuck in, unbidden, and once present became harder than usual to dispel.  While trying to get my mental state back under control I couldn’t write.  Just as I NEED to write at times, sometimes I just need to NOT write at times, or even think about anything serious — it really can turn into a Pandora’s Box without warning.  Does that make sense?

Little unpredictable things crack the Box open sometimes when I don’t realize the emotional walls are in place and shored up.  I remember, as the dusty twitch in my nose confirms as I glance to my right, that one trigger was just staring last week at a picture framed on a bookcase in my office.  It’s my favorite picture in 46+ years, of Ariana’s hand resting on my finger the day she was born.  She’s my Achilles Heel with this Myeloma thing, if you weren’t aware.

My cancer numbers are another source of anxiety, building towards next week when I’ll find out the results of the first 4 weeks of Dara (get tested Friday before my infusion, and should have #’s by the middle of next week for the Myeloma labs since they take longer than your standard CBC workup).  Hell even my current CBC numbers are a cause for concern — although they did my infusion Friday, presumably because the IViG I take covers the gap, my white blood cell count (WBC) and neutrophil count are WAY low.  As in normally I don’t think they’d do an infusion low.

On the bright side where that’s concerned, this is my off week for Revlimid, one of the 3 drugs I take with this current regimen, so I’m looking forward to that.  It’s a 28-day cycle with the last week free of the Revlimid pills.  Hopefully the numbers rebound a bit since walking around without a working immune system is about as fun as it sounds.

Death is the last part that I’ve had trouble erasing from my conscience lately.  Thinking about Ariana always wends it’s inevitable path towards this, to not being around for my daughter.  Far and away the hardest thought to dispel, it’s just been on my mind lately with all of the death surrounding me.  A diving friend.  A really nice guy I knew from back in the foosball days — RIP Bear and no that’s not a typo, I actually played ranked “tour” foosball for years albeit at a pretty low level and ran a local tourney for quite a while.  And non-death cancer stories too — a friend’s mother, an old friend from my Live Journal days, a close friend with Myeloma in a bad way and facing some nasty non-cancer issues, a text from my mother-in-law asking for a recommendation for a friend’s 28-year-old daughter who was just diagnosed last week with Hodgkin’s Lymphoma.

Regularly this wouldn’t affect me as deeply but all at once has been difficult.

Not that I want any of those notifications or conversations to stop oddly enough — I don’t see those things as a burden but instead I’m pointing them out to note two things.  One, there’s a difference between hearing something like those issues when you do and don’t have cancer.  The folks who go through this stuff with us don’t get this part, or a lot of this really.  They try, most of them, but they’ll never GET IT.  And that’s OK — I think all of us doomed folk would kill to go back to that naivete, wouldn’t we?  I know I certainly miss NOT knowing what was behind that particular door.  But that also means they just can’t provide the same comfort, at least to me.

I lived this with two different therapists (I think you’d call them both “therapists,” my bad if that’s incorrect).  Both were amazing, but one was actually working in a blood cancer clinic.  In one session with her I got more than I did from months of dealing with the other for what should be obvious reasons — it’s all she dealt with.  Even though she didn’t have blood cancer herself, we’re all she talked to professionally.  She’d heard it countless times to the point where she was an honorary member, if you will.

Anyhow the point is I feel like there’s a bond among cancer patients that you just have to experience to truly get — it’s in the same ceiling tiles counted.  Choking back tears in a car in your oncologist’s parking lot.  In nurses having to take a second shot at veins too abused to handle another poke, and a laundry list of side effects and their cures.  It’s wondering if the next time you go into the hospital if you’re coming back out.  It’s the mantras some of us (maybe all of us, who knows) use to get through the hard spots when the thoughts threaten to overwhelm.  It’s laughing in disbelief at the number of medications they want you to take, or in pondering death, not in the abstract sort of way we all ponder it, but in a very real “holy fuck, I’ve got the plague” sort of way.

It’s in asking “why.”  A LOT.

And hearing nothing but silence.

What I’ve noticed though is that when I talk to folks with this shared death sentence I feel better, even just a little.  I would hazard a guess that comes from there being so much helplessness with a diagnosis like this that the ability to even offer a tiny bit of hope to others is empowering, especially when all of the issues with this disease can be so emasculating.  While I’ve found a comfort of sorts in there really only being a few paths to take with this disease, sometimes it feels helpless.  A shitty job I could quit.  If my car turned out to be a lemon I could buy a new one.  But with cancer, at the end of the day, there’s not a lot you can do.  Eat better, get a new doctor, exercise or exercise more, pursue more holistic choices or supplements, etc.

Having an opportunity to even just listen and perhaps as importantly UNDERSTAND  someone else, which I’ve found is what most people just want to begin with, is cathartic.  So don’t get me wrong, I’m not bitching.

I knock it sometimes, but I do appreciate the awareness that people doing 5k’s and climbing K-2 or whatever “for cancer” brings.  However as a pragmatist there’s a large part of me that wishes instead of doing that stuff that those with our shared fate just helped each other more.  For all of the money raised have we cured any cancer, ever?  Does March being Myeloma Month (trust me I forgive you for not knowing that if you aren’t on Twitter specifically following like 1 of 50 or so people) matter?  I definitely could be showing my ignorance but have any of the countless anti-cancer organizations ever cured anything?

I’m sure they all do, or try, to do good.  Please don’t take this as a condemnation of those organizations as I KNOW they bring hope and other things to folks.  But when you are actually a cancer victim it’s pretty easy to slip into this thought process, you know?  Perhaps it’s just crass but as a cancer victim I think everyone has that thought one day similar to “well this sticker is cool and all, but STILL DYING OVER HERE.”

Sorry, but it’s true, admit it.

*crickets*

Damn it.

And sure, I know that sounds a bit downbeat.  Like I said it’s been a tough week and a lot of things have conspired to put me here, at least temporarily.  But to not end on a bummer note, I continue to do better off the massive Dex doses (again I still have to take a 4mg the day after and the day, um, after-after my Dara infusions, but I don’t feel that base level of just pure intolerance, impatience and anger from before that I associate with the Dex.  In fact now my biggest concern is that I feel like I can’t get angry or be impatient at anything, which makes dealing with a 5-year-old, um, “entertaining” and has me biting my lips much more than previously in life.  Especially on a weekend when the steroids (presumably) have kept me from sleeping for two days.  I raised my voice at my daughter this weekend when she was intentionally ignoring me and immediately got this “oh shit, he’s Dex’ing out” vibe from my wife.

My wife and I talked immediately, another thing that I think is helping things at home, but unlike before me being aware of her concerns before she even voiced them helped immensely.  We agreed that a good way to put me in check in case I even seemed like I was approaching DexRich (I really need a better name for that) would be to just ask me if I’m OK to insert a pause in there.  I suggested that.  See?  I am getting better.

I still have no idea what to do about disciplining my daughter, though.  We don’t do physical punishment so short of taking things away, which I do think teaches consequence if done right, I really have no alternatives besides going a bit R. Lee Ermey (drill sergeant from Full Metal Jacket) sparingly to express disapproval or initiate corrective behavior.  I’m afraid if I do nothing I’ll just get walked all over or put all of the disciplinary burden on my wife, neither of which are good answers.  We’ll figure it out, though.  As a family, which I’m here to tell you, before I got off the Dex, would not exist in the same house if things hadn’t gotten better.

BTW, THAT’S the kind of stuff talking to other patients gives you the opportunity to share with those who only have their doctors to go by.  We all know they whitewash things, and while I had plenty of warnings that Dex can make relationships difficult that’s the same sort of advice as “don’t touch the stove.”  It’s just an abstract concept until it’s too late because you experienced it yourself.

Instead, the last six weeks of being Dexamethasone-free things have been really amazing at home.  Everyone’s happier, including me, and my wife keeps telling me how grateful she is (that’s a definite first).  That her anxiety has all but vanished and my daughter and I are doing so much more together now means more to me than most of this stuff.  Which is awesome, but also opens the door for not only another shoe to drop but an ironic one at that since I’m the living embodiment, as I’ve mentioned before, of ironic outcomes.

So in other words I’ll probably get trampled to death by a herd of maddened pugs or something this year.

Fucking pugs.

One thing I would suggest is as a cancer victim if you really want to help another victim with cancer: TALK TO THEM.  Doctors will be doctors.  They speak differently, they detach themselves a lot for self-preservation, and they have different goals than we do.  That’s fine, it’s their job.  But for us?  Send money to pink license plate holders or whatever other thing is not curing breast cancer or run that marathon or climb that mountain but please, make time to just TALK to someone else with your disease (or any cancer, it’s all relative) as well.  Cancer patients don’t need to see other cancer patients doing superhuman things to feel normal.  We’re not normal and honestly for a lot of us it just makes us feel like shit if we can’t do that stuff.

Talk to one another instead.  It might be more helpful, to both of you, than you know.