Rough weekend.

Settling back into my life and realizing it’s not really mine, it’s a cancer patient’s and I don’t want it.

Nausea almost daily lately — not sure what the reason is but obviously not enjoying it.  Popping Zofran on almost a daily basis at this point.  Trying to get in to see my local oncologist for my 60-day post-transplant appointment so will see if I can go that long before dealing with it.

Having issues emotionally lately.  The cat thing is part of it — I can’t think of Mischief without getting overwhelmingly sad to the point of breaking down, which seems abnormal to me.  I mean yeah in most ways he was my best friend for 11 years but he was a pet.  It occurred to me this past week, however, that part of this may be because I think I just get along with animals better than people.  The mild discomfort and awkwardness, the emotional barriers, the shyness and slight introversion — none of that enters the equation with pets.  As such I wonder if due to that I’m suffering more than most would over this?  Not sure.

I want cats again but I’m afraid to bring it up with my wife for the time being.

I took Ariana on a daddy/daughter date to the aquarium this weekend, which was bittersweet.  She had a blast and loved the sharks, but it drove home the demarcation between my past life and my current one.  As I walked behind the scenes with her it felt like a different world, one that’s moved beyond me, and it saddened me a bit.

I’m not sure I can do justice to why in terms of explaining that with just words … your entire perspective shifts when you put on the proverbial cancer shades.  I can still, if I focus hard enough, remember what life was like almost a year ago when none of this was happening and my goals outside of Ariana-related stuff consisted of becoming a scuba instructor and continuing on like usual at the aquarium.  But now there’s this dark cloud obscuring it all, creating doubts and tethering the dreams I had like a ball and chain around my ankles.  Whether I’ll need maintenance chemotherapy, how I’ll still be needing monthly infusions of Zometa (the bone strengthening stuff that fucks me up for a few days every time) and the potential side effects and how to work that into a schedule where I want to submerse myself in somewhat unclean water.

Pre-transplant your focus, because that’s such a big, intimidating and landmark deal, is on the transplant.  Now, though?  I focus on day 100 post-transplant but looming over the horizon, and now visible really for the first time, is a life with cancer as a constant companion.

It doesn’t look like a lot of fun.

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.

Monday reflections.

I couldn’t get on here this weekend — just too much emotional stress, anxiety and fatigue at every level.

Went in for chemo on Friday and met with Dr. F.  They only had results from the third week of chemotherapy (so we’d have something to talk about).  The “bad” numbers, as I understand them, have gone down like 10-15%.  He termed that “average” and let me know that it’s generally not linear so not to worry, but obviously I was hoping for something more extraordinary.  We’ll see what happens in a month, I guess.

I apparently managed to forget to take a Prilosec Saturday morning because my stomach bugged me all weekend, and although I have not yet (knock on wood) had as bad a time of this first week’s treatment as I did previously (the Zometa infusion) my body just hurts.  Tons of back and shoulder and leg pain and stiffness.  It sucks how that just wears you down, but the deeper problem is it’s just the jab that gets thrown out there … the punch that actually hurts is the overhand right that follows when you realize, as opposed to when you might normally feel like hell, that even when it goes away you still have cancer.  In other words if I felt like this and had the flu at least I’d know at some point it was going to not only go away but not come back and I wouldn’t care.  With this situation, however, it’s just another weight stacked on my back to remind me of my situation.

I got a prescription for Lexapro from Dr. F. as well, although I’m waiting until I hear Dr. M.’s interpretation and opinion on everything (and that drug) this week.  Emailed her this morning, and asked her what I should do about meeting her mentor that she’s setting me up with since she’s quitting the Mayo Clinic.  I’m concerned that if I don’t go out there and meet with him that I won’t feel a connection, and worse he won’t feel one to me — having your doctor root for you and at least acting the part is important to me.  Not sure what to do so I asked them to weigh in on it.  I should be hearing from the stem cell transplant doctor she recommended from the MC in Arizona soon as well, apparently.

Not even sure what else to say here today.  Between the stress of Friday, the stress of waiting to see if the Zometa was going to destroy me physically again, the stress this fucking illness is putting on my marriage, I just feel empty today.