Long ride for only being a month.

Yeah I know it’s been a while.  Been a long month and not a particularly fun one.
I noticed right away that the Revlimid/Dex wasn’t as easy on my system, if a chemotherapy drug can be, as the Velcade/Cytoxin/Dex regimen was.  The fatigue hit me pretty hard, and the first week or so as my body adjusted to a new poison I had night sweats, headaches … nothing too too severe, but not really pleasant either.

The new regimen is 21 days on (1 pill a day) and 7 off.  Right towards the end of the first three weeks I got a stomach bug that knocked me on my ass for 3 days — zero energy, not a fun ride.  The next week, my week off Revlimid, I went in for my monthly checkup with the local oncologist and to start up the Zomeda infusions again (monthly bone-strengthener, nasty side effects).  At that meeting my CBC returned a super low white blood cell count, so they began the process of getting Neulasta, an expensive WBC production drug, approved through my insurance company.

The first time I had Zometa I ended up in the hospital a year ago.  Sure enough, my temperature shot up as the bone pain started over the weekend so I started the antibiotic I’m supposed to take as per instructions from my oncologist.  Flu-like syptoms start, temperature won’t go down and I feel flushed and miserable.  It seemed like things were improving towards mid-week, and then WHAM.  Fell off a cliff last Wednesday and ended up in the hospital.  Temperature was back up, cough was uncontrollable and so painful I thought I had pneumonia again, etc.  After 8 hours there and several tests they decided it was a viral bronchitis (which my daughter and wife then got), and by Friday things were stabilized, at least somewhat.  I still have a mild cough.

Got the Neulasta shot on Monday.  Feel flushed and uncomfortable, although none of the pain in my hips yet like I got when I took Neupogen before my stem cell harvest in February.  Headaches and weird jaw aches, though.  All in all not enjoying things, AT ALL.

The WBC scare drove home the fact that until further notice I’m done with scuba diving instruction and working at the Aquarium.  I just don’t have the immune system for either, and if Revlimid is going to be beating on my WBC (my oncologist’s opinion) to the point where I need to suplement WBC production, then I need to be extra careful.

I spent a lot of time miserable and on my back in the last several weeks thinking about things and trying to fight off a crushing amount of depression.  I have one realistic hope, and that’s that the Revlimid pounds this fucking disease down enough that I can lower some dosages and feel normal-ish, at least for a while.  But this monkey on my back just gets heavier, every day seemingly.  There’s no ignoring it, forgetting it.  I wake up and take drugs for it, I deal with the side effects all day, I take more drugs at night, and then, depending on the level of headache or other pain, i either take something to sleep or read myself to sleep with no covers because the regimens make me sweat like a pig all night.  Fun fun fun.

When I was sick in bed, my daughter was coming in daily and giving me hugs while exclaiming “poor daddy” in a way that while touching, broke my heart.  She has no idea her father has a terminal condition, and this is very likely as good as things are going to be.  Fuck she doesn’t even get that the cats are dead and asks where they are constantly, how the hell is she ever going to understand this?

I spent a day watching about 10 hours of DVR’ed Chopped I had stored up.  In almost every episode there was at least one chef who had a parent die at an early age.  Talk about not being able to escape through the magic of television.

I wish.

I feel sometimes like I should just change the name of this blog to “Depression Spiral” or something similar.  In over a decade of blogging I’ve certainly focused more on the negative than the positive since it’s cathartic for me, but there was positive there before.  Now it just seems darker each week, a continuous descent into the depths of disappointment over this diagnosis and metamorphosis from what I was into CANCER PATIENT.

In other words I’m not adjusting well, in case that weren’t obvious.


There’s several threads twisting in and out in the last few weeks that are combining to keep me reeling most waking moments.

One, I don’t think I’m asymptomatic anymore.  In the last week I’ve started having regular and constant lower back/spine pain as well as a sore spot in my hip/buttocks, both the spots that lit up as being active on my PET/CT scan.  I mentioned this to Dr. F. at chemotherapy last week and he said we could certainly get an MRI ordered and then “radiate” the spots, which didn’t sound fun.  I deferred to after the holidays to get my mind around the concept.  Either way it’s been a significant milestone in feeling lately like I’ve begun slipping from mortality somehow, that THIS IS HOW IT BEGINS.  Perhaps that’s not accurate, but it’s the feeling I have, right or wrong.

Secondly I feel like the LexaPro is just not working anymore.  Ever since about four weeks ago when Dr. F. casually noted that the CyBorD treatment didn’t seem very effective and I should ask Dr. M. at the MC about abandoning it I’ve felt like I was slipping emotionally.  I now feel about as stable as I felt before I started LexaPro (not very) — prone to overwhelming and random fits of depression and sorrow, inability to control my emotions, etc.  I need to call the docs today to see if they can up the dosage or something, but I have no idea if that’s how you do it with these kinds of drugs.  Zero experience.

My daughter’s second birthday party was this weekend (she turned 2 yesterday).  Combined with the overwhelming feeling that everything is finite for me lately (only X number of her birthdays left, etc.), it has been difficult to say the least.  The holidays coming up will be the same, if not worse.  On top of that my parents are being as toxic as they’ve ever been, which I cannot understand and feel is actively taking years off my life at this point.  You’d hope, if you ever go through something like this, that the people around you could rally a bit and re-prioritize.  When you get the opposite the effect is really chilling.

I’m finding it really difficult to excise this cancer part of me from the rest of my life.  Sunday night we took our daughter to Sesame Street Live, her first live stage performance.  As she sat on my lap in her gorgeous dress, enraptured, clapping along, saying the character names, I looked around at all of the other children and her and couldn’t stop the thoughts.  How unfair this is, how wrong, how isolating.

I have distilled my entire life down to one single fear at this point.  I don’t fear death itself anymore — that has been scoured away over the last several months as I’ve been forced to confront this reality and realized that while I don’t want to die, I’m not afraid to be gone for myself at least.  I fear the pain that this disease pretty much guarantees me on the way there a bit.  But really the only fear I have is the impact that my death, which feels imminent even if I know it’s years away, is going to have on my daughter.  How unfair it is that she won’t have a daddy after a certain point, and thanks to the method may not have much of one even before I’m gone.

We play every night together, talking, singing, and I cannot get that thought out of my fucking head as her innocence and the pure happiness of being that only children possess washes over me and highlights these facts.  I can’t even escape it when she’s not around — I was watching Chopped the other night, one of the only TV shows I watch, and one contestant just randomly mentioned that his life was transformed when his father died at 12 and only cooking saved him.  It’s kind of hard to sit there and not have that effect you, but to hear it, knowing you are going to do that to someone?  It’s too much, just too hard.  I wonder, very seriously, if I’m making a mistake hanging around.  It’s not like there’s hope here.  I know that sounds defeatist, I know I need to be positive, but the pragmatic side of me knows this is a death sentence.  This isn’t a cancer, to my knowledge, that you get to survive indefinitely like some tumor you get removed.  Unless they cure it I’m always going to be under it’s shadow until it eats me alive, literally.

Is it better to stick around, torturing myself while I slowly but surely wither away and knowing that at best I’ll have a limited amount of time to share with my daughter before I yank that away and leave her with the hole a prematurely dying parent leaves in a child?  Or is the courageous choice to take myself out of the picture now, before she is capable of remembering more than flickering glimpses, to give her a chance to have someone else, perhaps even better, fill that role?

I cannot describe the sheer agony of knowing that all you ever wanted in life, all that mattered to you, was to be the hero to a little girl who’s already been through too much.  And knowing instead you’ll destroy her no matter which way you turn or what you do.

Live with that for a day and then tell me I’m crazy to be considering this stuff pragmatically.  Then ask another cancer patient about it, because I can’t find a column or blog written by one where I don’t see the same theme repeated over and over and over again.

So I dunno.  My inability to doom her right now to having a father who killed himself answers the question, as it’s my understanding from researching this (quite a bit of research) that of the two (dying when she’s young or committing suicide) the latter is far worse.  I’m just not sure I can reconcile it indefinitely.

Oh, did I mention I feel like every week my blogging gets darker and darker?

OK, just checking.

I’ve been trying to get a letter written to Ariana for a while now — I have it started and saved but it’s simply too painful right now.  I realized that I was kind of blogging to her, which was getting dark, so I decided to sort of tell her the story of my life in future letters.  I realize, as I have more and more time to reflect, that I will be the only one with either the information or the interest to really let her know who I was.  Fuck, of the few people I know anymore who even know a little about me I think half of them have opinions of me that aren’t entirely flattering anyways.  I had always hoped to relate the stories of my life, my experiences and the lessons I learned (or should have) in person.  It just doesn’t feel like that’s feasible anymore.

As usual the Zometa infusion has made this weekend brutal.  It feels like it’s kicking in later than usual this time — Sunday was awful, with the usual bone and muscle pains and cramps, but then Sunday night was even worse.  I think because it hasn’t been cold in previous months outside that sleeping without sheets helped somewhat.  Sunday night, however, it was freezing so I’d pull the sheets up and then wake up two hours later soaked like someone had poured a bucket of water on me.  Change clothes, go back to bed, and two hours later repeat the same cycle.  All night.

What else … oh, got a letter from my insurance company last night that, at least how I’m interpreting it, implies they will not cover me having my stem cell transplant at the MC in Arizona.  I had no idea the transplant coordinator had started initiating research like that so it was a complete surprise and obviously a slap in the face.  I’m hoping I’m simply reading the paperwork wrong, but I’ll need to confirm that tomorrow — it just seems like too much effort and too much risk today.

Not good news.

Went in Friday to start my third cycle of chemotherapy and talk to my local oncologist about my results.  There are two primary numbers for my particular flavor of multiple myeloma that I’m trying to reduce to close to zero, igG(S) and igG Kappa.  Don’t ask me what they mean — they’re just numbers to me representing this disease and the explanations are a bit beyond my comprehension.  Anyhow, after 2 of 4 prescribed chemotherapy cycles I’ve only made a 25% dent in the igG(S) and really haven’t changed the igG Kappa.  According to Dr. F., that’s not a good sign that the CyBorD chemotherapy regimen is working.  He said generally you’d expect a more substantial impact up front for a variety of reasons, and that at this point it seemed likely that (a) I’d need to change regimens and (b) the chances of being ready to do the stem cell transplant by January are low.

Learning all of this was like getting slapped in the face with a bag of bricks.  I just can’t seem to catch a break with any of this, and I feel like I’m being railroaded towards a fairly unpleasant demise every time I get more news.  I cried in the car driving home, something I haven’t done in a long time — even through the LexaPro it’s just too much.  All of the old thoughts about not being around for Ariana came rushing back, etc.  I know there are other therapies and that it was wishful thinking to believe I could have any semblance of normalcy in life after being diagnosed with this, but whatever glimmers of hope I had for that just got trampled Friday.

On top of that this was a Zometa infusion week, and sure enough starting Saturday that fun began again.  Nothing as bad as that first cycle but really cloying bone and muscle pain that has lasted until today.  I feel like I got thrown out of a car, if that helps paint the picture.  New this month was/is that I feel like I sprained something in every muscle in my shoulder blades on my back … just an odd sensation.

The plan is now to see what Dr. M. at the Mayo Clinic in Arizona thinks about everything when I get down there on the 12th.  I’m thinking if we hit it off I’m going to have him take over my care as well — I’m not sure what the point of Dr. K. in Rochester is when I’ve never met him and they’re all on the same team.  Minnesota is too far from me while Arizona is an easy trip at any time of the year, too hard to get to, can be inaccessible in winter and I have no connection with the doctor there.  I’m sure he’s a genius like the rest of these guys, but I like feeling like the people in charge of my life care.  So we’ll see.

I switched therapy to be twice a month since (at least up until this weekend) the LexaPro was having a significant impact.  The timing of that, as well as the rest of all of this shit, is really making me feel like there’s some force out there taking a direct interest in fucking me over as much and as insidiously as possible.  I just don’t get it.

Bad weekend.

As if I have many other kinds, lately.  I hate saying that, I hate this “woe is me shit” that seems to have consumed my life lately.  I’m at this stage now, if you can call it that, where it’s how I feel.  Last week the therapist mentioned again that people generally don’t progress linearly through the stages of grief / trauma, and I feel like I’m all over the place.

Back towards the end of the first week of my chemotherapy, presumably due to taking Levaquin for that fever, Dr. F. started me on Prilosec OTC when I started having abdominal pain.  That’s a 14-day pill regimen which according to the box you aren’t supposed to redo for 4 months without a doctor’s approval.  Unfortunately after cycling off it last week my stomach started bothering me again this weekend and I ended up calling Dr. F., who told me to get back on it and follow up with my GI guy (who said the same thing and said disregard the box instructions and just stay on it).

So yay, another fucking pill I get to take forever.  Took yesterday off to not have to deal with the stomach pain at work and to give myself a mental break.


On a not brighter note, while talking to my GI doctor I tried to schedule the colonoscopy the Mayo Clinic had ordered since I now have a month of chemotherapy under my belt (there was concern about doing too much too soon and drug interaction with results).  Unfortunately I had one last November, and my doctor’s assistant felt that this needed to be handled delicately because there was a good chance my insurance would not pay for a second one within a year’s time.  This even though something showed up on that CAT scan I had prior to hitting the Mayo Clinic.

Because really, I needed something else to be anxious over.  I had hoped to just get this dealt with and have one less thing to worry about, but it sounds like that’s questionable now.

Last week the therapist also mentioned (can’t remember if I wrote about this) that I might want to consider going on anti-depressants.  I have staunchly opposed those for my entire adult life on the basis that sometimes life is depressing and you grow emotionally by working through things.  But this isn’t a partner cheating on me or a divorce or something else depressing to “work through.”  I have cancer.  It is certainly within the realm of high probability, unless they magically cure this before it chews me up or something beats it to the punch, that I’m going to die from this.  As such I feel stuck in this groove on the record where it feels like the weight of having this is just dragging me down the fucking toilet.  No matter how I frame it, no matter how I spin it, I keep coming back to “I have cancer.”

I hate that, I hate that I feel like I need to now chemically alter my brain just to cope with all of this.  What the fuck happened to me, to my life?  And why?

Amy went down to the Springs with Ariana for a night and to do a much needed and deserved spa day.  While she was gone I worked on cleaning up the spare bedroom upstairs, which has become a repository for all of Ariana’s old clothing and stuff that we need to either donate, put on consignment or garage sale away.  That’s the only good thing about my chemotherapy, the steroids have me organizing the house on a daily basis.  Anyhow I’m laying out stacks of my daughter’s clothing and I just fucking broke down, totally.  I feel like I squandered her first year of life adjusting to being a parent instead of being a better one, feel like I could have done and been so much more for her — and now I’m facing the very real possibility that I won’t get to make that time up.  I realized, looking through all of those tiny dresses and infant hats, exactly how much I’d give to have a chance to do that over — but I won’t get that.

I know I’m being hard on myself and that I’ve done the best I can do.  I know I work harder every day to be her hero and to be a better father.  I just can’t get out of this mental place right now — it’s just all bad, everywhere I look.

Here we are again.

It’s weird leaving the office to come to chemotherapy.  I walk out of the office building amidst other people going to lunch, going for a walk, talking on their phones, laughing, etc.  Me?  Not so much.  I’m off to RMCC for chemotherapy.  So odd, so isolating.

This marks the first month, and cycle, of my chemotherapy.  Next week I’ll do this at Rose and get blood tests to see, presumably, my progress. As such I can only imagine next week will be stressful.
Therapy was interesting yesterday.  My therapist made the comment that while there are certainly a lot of issues here to deal with related to having cancer, that the umbrella problem is a lack of control. A lack of control over my health, losing who I was to this disease, over the guilt I feel for those around me having to deal with it, over how those close to me are dealing with me, etc.  I hadn’t really thought of it that way, specifically, so I thought it was a cool way of framing it, anyhow.
Sitting here composing this on my iPhone waiting for a doctor to approve my CBC levels to give me the Velcade shot.  The numbers are all fine, they just have to be approved officially.  Busy room today, and the relative silence is being broken up by a patient throwing up in the corner and other  fun reminders of where I am, what I have, and how much I wish neither were my reality.
Insurance is fucking around with refilling my Cytoxin prescription (one of the three-drug regimen drugs in my chemotherapy).  King Soopers called to let me know the insurance company won’t pay for refills, so I’m now waiting for the oncologist to let me know if that’s their problem or mine.  It’s only $140 a month if not, I think, so nothing too troubling, but annoying.
Debating going to church lately.  Not that I suddenly believe, but the hits just keep coming this year and it’s hard not to feel like there’s a divine entity or voodoo curse with a strong interest in fucking my family in all kinds of fun ways that apparently I owe some sort of apology for.  Let’s review:
  • I was diagnosed with a rare cancer,
  • Amy’s sister had a horrific accident,
  • We had to put the dogs down, both of them,
  • Amy’s parents’ dog Chloe died,
  • I have a leak in the dining room, presumably from the roof,
  • Amy’s best friend in the neighborhood is moving,
  • My father has to go see a glaucoma specialist,
  • My mother is seriously fucking with my wife’s mental health,
  • And oh yeah, I was diagnosed with CANCER.  Just in case I hadn’t mentioned that recently.
I was bemoaning this a bit last night to Amy when she cautioned me that things could definitely get worse.  Well yeah, but fuck, not by much you know?  Where’s the fucking good swing of the pendulum?    And why do I feel like the anti-Job?

Eight days.

Met with the local oncologist today and it went well, all things considered.  I mean I still have cancer and it wasn’t all some elaborate hoax, but the meeting went well =/  We chose the CyBorD treatment option, which is apparently a ridiculous amount of pills once a week as well as a Velcade shot, a monthly IV infusion of zoledronic acid for bone strength and “survival advantage,” and 1000 units of Vitamin D and 1 to 1.5g calcium daily.  On top of that I have two strengths of anti-nausea medications and an anti-Shingles drug (at high risk due to the chemo treatment, apparently).

So I start in 8 days, next Friday.  I guess I just take all of the 3 chemo drugs in one day, not sure on the rest yet.  I have a “class” to attend early next week to go over my chemotherapy, side effects, etc.

“Joygasm.”

I feel remarkably calm about all of this.  If I were to guess I’d attribute that partially to shock, resignation, denial, the surreal nature of this all, etc.  I was sitting at the schedulers desk setting all of this up today and I said to her how odd it felt to be scheduling chemotherapy, and it’s true — seriously what a bizarre feeling.  I would imagine next week will be an emotional roller-coaster as well as CHEMOTHERAPY DAY looms, but while just next week it feels like a lifetime away.  I guess that’s the problem with having cancer with no symptoms — none of this is real to me right now.

Been researching hemp- and cannabinoid-based treatments for cancer in the last few days.  Obviously there’s very little research out there but a lot of anecdotal evidence that there’s a lot of potential.  I had been hoping, living in one of the most liberal medical marijuana states, that this would be an easy avenue to pursue.  Unfortunately in the last week it turns out the MMJ database maintained by the state is apparently being shared with law enforcement, and with a toddler at home I have no desire to have my name on any lists connected with a Schedule I narcotic.  It’s fucking shameful that this is the case.  You can’t throw the proverbial rock at the Internet without getting 1,000,000 hits of real stories about people who have had success combating all sorts of terminal diseases (including cancer) and critical conditions with marijuana-based therapies like hemp oil.

But as long as the willfully ignorant make the rules (and can send Child Protective Services to your door) it’s just not worth the risk.  Here’s to hoping it isn’t the missing component of my success in beating this goddamn disease, I guess.

Waiting for the sentencing.

Today has been bittersweet.  Talked to a few friends today about everything that’s going on, but waiting for the local oncologist who will be handling my day-to-day stuff to get back to me regarding starting chemotherapy.  The doctor in charge of my care up at the Mayo Clinic in MN (Dr. M.) talked to him yesterday but I have yet to hear from him, and I’m antsy about it.  She emailed me yesterday that they got along great but that he preferred another cocktail of drugs to what she recommended … Dr. M. at the MC thinks I should start chemotherapy with CyBorD (cyclophosphamide, bortezomib/Velcade, dexamethasone) while apparently Dr. F. here locally is going to make a case for VRD (bortezomib/Velcade, Revlimid, dexamethasone).

Dr. M. had noted in our visit with her that given almost equal success rates with either treatment, that she’d rather save Revlimid (the big and newest “gun” in the MM arsenal) in her back pocket for later down the road.  That makes sense to me.  Either way I woke up at 3 am last night and the first thought that entered my head was how to deal with this discussion and I didn’t get back to sleep the rest of the night.  I’m sure it will go well but having never dealt with referrals and all this, and being wired to not want to step on people’s toes, I’m just anxious about it.

Anxious about not hearing from him yet either.  Not like I’m all psyched up to start chemotherapy, but I would let to get this show on the road now that the thinking, meeting and testing is mostly done.

We had the pugs put down yesterday which has been difficult for Amy — one of her friends came over for the day at my request, and I’m hoping her good mood carries through the rest of this week as things get a bit more serious.  As infirm as they were right now she just felt it was time, which I understand but didn’t make it any easier.  I took care of it with my dad’s help.

One of the harder things about something this traumatizing is the immensely wild swings in emotions that just slam into you like a car accident — at least so far there’s no smooth, predictable emotional wave whatsoever.  Knowing that, and knowing we’re not even into the meat of all of this yet, makes it tough to fully engage in life right now, if that makes sense, sort of like holding onto the side of the boat on perfect seas for no apparent reason but doing so because at any moment you expect a huge wave to hit.  I’ve been nailed a few times out of the blue just sitting at my desk and I’ll think of Ariana, or see someones kid doing something on Facebook, and just brutal waves of despair overwhelm me.  Kind of nerve-wracking, to say the least.

Have an appointment with a therapist this week that I did a consult with last week.  Never been a giant fan of the concept, but I fully recognize that I am just not mentally and emotionally equipped to deal with what’s coming.  Hoping she can give me at least some tools to cope with it all.