A lot has happened in the last few weeks, I just haven’t felt like writing here.  Not even sure I feel like it now, but as it’s been two weeks I should probably provide an update.

I’m still struggling a bit with the scuba thing.  I’m not sure that will change, but I suppose much like the physical wounds not healing as fast due to a low white blood cell count, neither are the emotional ones.  I cling to the life I had still and I have yet to embrace, if I ever will, the fact that that Rich is gone and a cancer patient remains.

On the bright side, I went down to the Mayo Clinic in Arizona and not only accomplished all of my goals but got some good news for a change.  Or at least as good news as it gets when you have an incurable form of cancer, anyways.  Dr. M. and I got along well and he agreed to take over my care — meaning no more Minnesota trips or wondering why my doctor there wasn’t contacting me.  Secondly he disagreed with Dr. F. here locally and wants me to stay on the current chemotherapy regimen (Velcade) and showed me a few charts about how not only are my numbers OK but that they are in some ways preferable to an immediate drop to near 0%.  Lastly he told me I do not have to be fully in remission, as I have been told previously, to do the stem cell transplant, so we’re still looking at mid-January for that.

The Velcade thing troubles me a bit because that’s a big fucking deal, but it makes sense and justifies why I wanted to be treated by the MC — this is the advantage of having expert doctors.  If it wasn’t for that opinion in a week I’d be done with Velcade and my life would be that much shorter.  Kind of scary, really, especially since I really can’t blame Dr. F. here locally for his opinion.  He simply doesn’t deal with this form of cancer enough to deviate from what he understands to be the best way of keeping me healthy.  It’s that “understands” gap that kills you eventually, though.

One of the cool things about the new doctor is he specializes in younger patients with myeloma.  Not sure at 43 I qualify as younger but statistically I’m still on the skinny end of the curve for having this.

Anyhow that’s the latest news.  I’ll be heading back out to Arizona in mid-December with my wife to visit Dr. M. again and meet with the transplant coordinator and social service folks to deal with the logistics as long as things keep progressing.

Given the holidays coming up and expected emotional turmoil those, my birthday and more importantly my daughter’s second birthday are all coming up (all within the next few weeks) I may or may not be here much.  I have purposely tried to avoid thinking about most of that on an emotional level for obvious reasons but there’s no avoiding it as it happens.

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.

That whistling sound.

It’s been difficult for the past few days to not feel like life is passing me by.

A group of peers recently finished their journey towards becoming scuba instructors, and as I’ve read the updates and checked out the pictures it’s been difficult not to let jealousy and even some small amount of anger and frustration through.  Not at any of them, certainly — other people’s success or failures have no impact on my own, and I’m definitely happy for a couple of them (don’t know the whole group).  It’s just that it’s a reminder of where I was going and what it meant to me.  Took me a few days to figure that out, to understand why this was upsetting me this weekend, but it came to me last night as a minor epiphany.

I’m not sure I can ever really explain to most folks what scuba diving, and getting into it professionally as a hobby (I kept the day job) has meant to me.  Getting to share something so non-competitive and fun and help folks on that road was a big purpose in my life, albeit one I adopted later than I had wished, and I relished every moment of it.  I had a goal of someday becoming an instructor and doing it actively when it wouldn’t hamper my time with my daughter, and maybe putting in the teaching and ass-kissing time to lead some trips via my dive shop some day.

There was a comfort in that, a goal, at least some path that I could follow, and I worked hard at both it and my reputation and work ethic at the shop.  I sacrificed time with my family for it, and fought tooth and nail to keep it in my life once or twice because it really was my only avenue to sanity sometimes.  I ate shit more than once when I needed to from people I’d laugh out of my office were the situation reversed and I did it smiling because I always had a goal in mind, refusing to let small-mindedness, drama, rude customers or stupidity get in the way of the long-term plan.

Plus I kept meeting more and more fun people and solid friends diving, something I haven’t really had most of my life either.  I think about it now and I honestly don’t think I socialize with anyone who doesn’t dive, come to think of it.

But everyone else’s world keeps turning while mine has ground to a halt.  Christ I can’t even dive recreationally right now since I’m healing slow and they are punching holes in me on a weekly basis.  Not to mention the fact that most weekends I’m a post-chemotherapy mess, so even were I not worried about rubbing a recent injection site with a wet wetsuit for 8 hours straight I couldn’t be relied upon.  Nope, now I just watch from the sidelines.  I watch friends make new dive trip plans, and new instructors get hatched.  I look forlornly at the aquarium schedule I used to take so much pride in being on without my name on it anymore.  I wonder if I’ll have the balls to even go to the next staff meeting.

And I go home, and hug my daughter, and hope she doesn’t understand any of this, even though she loves to point at any picture of a diver and say “daddy!”  I had hoped to live long enough to go diving with her, but that seems almost out of my grasp now.  I can read the survivability studies as well as anyone else — most likely the only way I’ll even live long enough to see her get to go snorkeling is if they cure my disease.

I was thinking about all of this Sunday on a walk with my father-in-law and daughter as I noted yet another car with one of those annoying “my kid is a blah blah blah honor student” bumper stickers.  I want live long enough to have one of those on the Mustang.  Or twenty.  Fuck, even that’s a stretch … I’m not sure how many goals I get to really have anymore … maybe I should consolidate down to key ones, like hoping that my slow and agonizing death from incurable blood cancer doesn’t permanently scar my daughter when daddy dies before she’s even a teenager.  Sigh.

Granted, it’s a goal, just not quite a fun one as becoming a scuba instructor was.

But that whistling sound is my past life and all of it’s goals like wind through my old motorcycle helmet.  You wouldn’t think, four weeks before turning 43, that you’d have to feel like this.

On a side note, I’ve wondered lately when it hurts this bad how much worse it would be if it weren’t for the LexaPro.  I’m guessing this would be one of those “stop by Cabela’s for a shotgun, yes/no?” sort of days, but instead I’m just feeling sorry for myself and wishing I had another fucking venti soy latte.

Why won’t this just go away?  Why do I have this when such horrific scum are out there living perfectly healthy lives?  And people wonder why I don’t buy into religion.