Not the best Thursday night.

Today was actually going OK, all things considered, until this evening.  Amy and I got back from dinner and I called my father back (he had left a message during dinner) who offered to go with me to chemotherapy tomorrow.  He sounded pretty broken up but I told him it wasn’t necessary and it would be an in-and-out deal.  I just want to put on a game face, get in, get done and get out and save the emotional breakdowns for home, which I’m afraid I won’t be able to avoid with everyone around me in shock at what I’m about to start having to do.


My mother called me back, apparently in secret, and told me he’s not doing very well with all of this and wanted to be there with me, so I called back and invited him.  I just can’t deal with how much this is affecting him — my dad is never emotional, much less in a crippling way.  Up until this cancer business I had only heard his voice crack in sadness twice, once at a funeral and when he called me a few minutes after he found out one of his brothers had died in a car accident.  I’ve heard it more than once this week, and that’s just this week.

Hearing my dad’s broken voice about this is just killing me.  I hear in it all of the anguish of outliving a child, of his eternal optimism just dying, etc.  I don’t know how to handle that.

It’s not bad enough that I have terminal disease, but on top of the overwhelming weight of that and what’s happening to me I’ve found I now carry this tremendous guilt over how it’s affecting everyone around me as well.  Broke down trying to talk to Amy about it while having some birthday cake a friend made for her.  Oh yeah, today was Amy’s birthday and I promised myself I would let this shit go for tonight, but I couldn’t even manage that.

It’s just too much, this is all too much.

Why is this happening to me?

Wednesday.

Sort of a zombie today.  Again spending a lot of emotional effort just not thinking about things, outside of when I have to.  Left a message last night for Dr. M at the MC and this morning for Dr. F at RMCC because I feel like there’s a disconnect between what I’m being told to do with all of this medication (when to take it, etc.) caused by yesterday’s meeting with the nursing guy.  Heard back from a nurse who works with Dr. M. who basically said use as per Dr. F’s instructions, which isn’t exactly “taking charge of my care” in my mind.  The nurse up there also said they have received nothing yet from RMCC, which is annoying.

Have errands to run for my wife’s birthday tomorrow.

Bad night.

Bad night … stressed out, short temper, the works. I think it’s the reality of picking up all of these pills at the pharmacy on the way home.  Now they’re just sitting on my desk like the grim reaper.  Feel super tense tonight ever since I put Ariana to bed and I can’t shake it off even when I’m not thinking about any of this.

Have two minor adjustments to make to my medication, so glad I went and got the stuff tonight.  There’s a more effective version of one of the nausea meds (a version that dissolves under the tongue and hits you quicker), and they only gave me 1 week’s worth of one of the three chemotherapy drugs with no refills (the 10-pills a dose steroid).  The pharmacy tech was nice, although she offered me the obligatory “sorry” about having to take all of this stuff.  I understand, it’s just a hard reaction to hear so much lately.  I’m sorry too, folks.  Not quite as sorry as my daughter will be that she didn’t have a daddy because he died of cancer, but yeah.

I know that’s horribly unfair, I know.  I’m just bitter right now, it’s just me tonight.  This just is so intense at times I can’t cope with it.  It’s not like I don’t appreciate people caring, even strangers — hell I feel guilty most of the time for existing with this, like I’m bringing down the people around me.  I’m sorry she had to deal with someone with cancer today, talk about a buzz-kill.

Frustrated.  Like my Aunt said today, it doesn’t seem fair.  Got that right, Aunt B.

Time for another Xanax and to try to sleep this mood off.

I came close to doing something this afternoon that I have yet to do, which is break out the cancer card to get something.  I called the Sky Ridge RMCC to schedule the three chemo sessions I need to do there and the person who answered the phone didn’t know how to do that since my primary doctor in their group is stationed at another location, and I started to get the “this is too much of a pain in the ass” vibe you get from people who forget the compassion side of the job.  I was a few moments from giving her the sob story but she finally got the right person on the phone and got us all set up.  Hopefully correctly.

On a lighter note (which isn’t too hard to hit after the last four paragraphs), been watching videos for the last few hours trying to cheer up and calm down while putting together an Iron Maiden playlist for a friend’s young son (5 years old?  My memory sucks).  He was singing some horrifying “Call Me Maybe” pop garbage the last time I saw him, so it’s intervention CD time.  Wanted to put some Slayer on there too but we need to work up to that, and 5’s a bit young for the lyrics of Angel of Death, Dead Skin Mask and South of Heaven.

Six should be OK for that though, right?

Chemo-educated.

Had my chemotherapy “class” this morning with the head of nursing at the cancer clinic I’ll be doing my chemotherapy at.  He was nice and calming, and walked me through what to expect, side effects, what to do in certain scenarios, etc.  I should probably go pick my pharmacy’s worth of drugs today, although I’ll admit I’m a bit freaked out by the concept.  If frigging Anthem BCBS hadn’t broken with Walgreens at least I could have gone to a drive thru, but now I have to stand in line with a compromised immune system with a ton of sick, nosy people while I pick up like 10 prescriptions.  Which being King Soopers will be handled with the delicacy, privacy and professionalism I would expect if I were having my scripts filled at Grease Monkey.

Sigh.

On the bright side, although my chemotherapy will be a weekly thing, (1) I only have to do it at Rose once a month (for an IV infusion that lasts 20 minutes and a visit with the local oncologist) and can do the other 3 weeks at Sky Ridge (about 1.5 hours closer to my house/office, round-trip), and (2) I was told on a scale of 1-10 with 1 being a stubbed toe and 10 being death my regimen should be about a 1.25.  It’s basically a ton of pills I take on my own, a shot in the stomach once a week at one of their locations, and then this IV drip business.  So hopefully that wasn’t just wishful thinking that it will go easy — what this is going to be like has been adding a whole new fun layer on top of the already full cup o’ “fuck, I have to do chemotherapy” anxiety I was already dealing with.

We even chatted about medical marijuana and hemp oil this morning, although after reading a local story on Facebook today about a Colorado family with a child in a fight with Child Protective Services due to the parent’s MMJ cards I’m just closing that avenue of treatment down for now.  I’d rather, well, die of cancer, quite honestly, than put my daughter in jeopardy.  So score one for the ignorati.

Mentally and emotionally I’ve been doing alright this week, at least for the most part.  I think most of that has been accomplished simply by trying not to think about it too much.  I had a long talk with my Aunt after the class this morning and she seemed to think I sounded good, and positive.  I don’t really feel that way, just resigned to move forward.  I’ve learned about as much as I can, I’ve stacked all the odds I can affect in my favor, and I’m now on the only road visible.

Doesn’t mean I’m psyched to be on it, though, nor do I think it takes much courage.  I’ve been given a choice, effectively, of giving up and my daughter never knowing who I was or trying to be around for her — it doesn’t take courage to make the right decision there, just love.

"Yay, chemotherapy week!" Said nobody, ever.

So I started a CaringBridge site at the recommendation of a friend who’s been super supportive during all of this and had some great recommendations for me so far.  I thought a blog made more sense to me personally, however, seeing as how I’ve blogged for half my life and I like the ability to interact via comments, etc.  Same concept, slightly different implementation, and here we are.  Although technically right now “we” is just me since nobody I know has this address and I’m reluctant, for a few reasons, to open this particular Pandora’s Box to everyone I know just yet.

I can’t even really explain that thought except that I feel like in doing so perhaps this becomes even more brutally real than it is right now.

Dropped off all of the prescriptions on Friday at King Soopers in preparation to start taking them this week.  I have a class tomorrow morning at RMCC (Rocky Mountain Cancer Center) about my chemotherapy which presumably goes over all of the side effects and “what ifs” involved.  Now I just have to get through the week.

Amy, Ariana and I got out Sunday for a few hours to visit the Fins Attached event at the Wildlife Experience down the street from where we live and then hit up the mall.  Was nice to see a few co-workers at the event, but I feel so far from that world right now.  Seeing people I know and talking to them is kind of odd now too.  Not in a “I don’t want to do this” way but it just feels like the dynamic has totally changed.  Now I’m their friend or acquaintance WHO HAS CANCER instead of just me.

Obviously some of this is my own feelings coloring perceptions, but the conversations are more intense, tougher to get through at times, etc.  I used to be whimsical, at least when relaxed, and now I feel like that only manifests itself in black humor about this.

Maybe I’m embarrassed by having cancer too … I guess that would make sense to a degree.  I know that probably seems silly, but being an introvert it’s hard to feel like I have this spotlight shining down on me and not allowing me to blend into the woodwork anymore.  Who knows … emotionally I’m everywhere and nowhere with this right now, and I have no idea when that will subside, if ever.

Lots of hardcore thoughts throughout the weekend.  Like I told my therapist (started seeing one 2 weeks ago to arm myself to deal with the emotions of all of this) I think I’m in shock still.  None of this feels real except when it feels TOTALLY FUCKING TOO REAL.  Like last night when I’m putting Ariana to bed … I do her bath, change her and get her dressed for bed, read her something and then we snuggle for a second before I hit the light and put her in her crib.  Last night though we just sat there in the rocking chair, her falling asleep on my chest while we rocked, and it was just too hard to keep the emotions in check.

When I allow myself to feel (or when it washes over me and I have no control to stop it) I feel nothing but despair right now … zero hope at all.  I’m doing everything I can in the meantime to beat this, mind you, but it’s just too fresh an emotional wound right now — I haven’t even started my treatment yet.  I just have a lot of things I can point to and say I should, realistically, have the most favorable outcome.  For example, the Powerpoint presentation (minus colorful pie charts) of why I’ll survive this cancer for longer than the average MM victim (patient?  Feel more like a victim):

  • They caught this super early
  • I’m younger than the average person going through this (42 versus 65)
  • I’m asymptomatic (i.e., nothing truly “wrong” yet)
  • I can afford the best care there is, like the Mayo Clinic
  • I have a ton of support from family and friends
  • I have a job that has already said “take care of yourself and don’t worry about things
  • I have a loving wife dedicated to getting me as healthy as possible with a well-rounded approach (diet, exercise, alternative therapies)

Etc., etc.  The problem is I can recite those at will but I don’t truly BELIEVE I will beat this. Does that make sense?  I’m still sitting around thinking “holy fuck I have cancer.”  Right now that just feels like my epitaph.  I look at my daughter and I’m crushed because I don’t think I’m going to be there for her past an age where she’ll even remember me.  And even if I am, will I be healthy enough to be a meaningful part of her life, at least the way I envisioned it?

I know I need to feel hope … but I haven’t even started the fight yet, physically anyways.  And in my defense, right now I’d simply argue that were I truly feeling hopeless I wouldn’t bother with any of this shit — I’d be out snarfing bacon double-cheeseburgers, eating tons of refined sugar and most of all not treating this as real, because I feel amazing right now and none of what I’m about to start having to do sounds like fun.

In fact it feels like I’m living Iron Maiden’s song “Hallowed Be Thy Name,” quite frankly.  You don’t get the full “Rich Blog Experience™” without Iron Maiden lyrics, btw.

But no, instead I’m eating healthier than I ever have in my life, taking supplements, avoiding all preservatives, refined sugars and enriched white flour and trying to avoid GMO’s (good luck with that).  We’ve thrown out every chemical in the house (or I’m not allowed to use them anymore).  Christ I’ve switched to drinking soy lattes.  Trust me, if I had no desire to live the last fucking thing I’d do on this planet is have a soy latte. LAST.  THING.

Yes I know Starbucks’ soy has some sugar in it.  My morning coffee (and rare occasional diet slips) gets to be filed under the “food for the soul” category for now.

Anyways, the point is if I slip into despair, sound vaguely suicidal, etc., I am at least doing what needs to be done while I work through it.  That’s about the best I can do, even if this all feels like the end.

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.

Slightly more ‘hurry up and wait.’

Talked to the local oncologist’s assistant here and have an appointment Thursday afternoon to get things rolling with the chemotherapy.  A little nervous about how that will go but fingers crossed — I’m at a pretty high stress level and it would be nice if something would go my way with all of this right now.  Unfortunately my original hope, which is to be able to do my weekly chemotherapy treatments at their Sky Ridge location but keep him as my local doctor, sounds like it’s a no-go.

Still going to push for it since a weekly trip to Rose is a good 1.5 hour round-trip commute at best, while Sky Ridge is 20 minutes round-trip.  Seeing as how I’m having a doctor at the Mayo Clinic direct my care anyways I’m not sure what the benefits of just finding a doctor at their Sky Ridge location is … I guess Rocky Mountain Cancer Center isn’t a group the way I thought it was, but we’ll see.

Meeting a therapist to work through the emotional and mental issues related to all of this Friday, waiting to have a endoscopy scheduled with my GI guy to rule out some things they saw on the CAT scan that the oncologists want checked out.

Through all of this I actually feel really good (most likely a function of a vastly cleaner diet for the past 4-5 months), which makes this all so hard to swallow.  I’m on the precipice of embarking on a very scary, very serious road and I don’t feel the slightest bit sick.  Kind of broke down for a moment on the couch last night talking about this with Amy … there we are, sitting and having dinner on the couch and watching some Food Network show similar to our usual routine for quite a while, except it’s all different now because the sense of normalcy is just an illusion, is just us pretending for a moment that this isn’t all happening.

Makes it hard to enjoy even a peaceful moment.