Post-Thanksgiving update.

I guess I can’t really avoid this place anymore — certainly tried over the last month, but it gets kind of silly to not blog at least once a month for something like this.  As I was trying to explain to my wife, and think I did at some point to my therapist, is that I can generally cope with having myeloma if I can focus on the short-term, the present.  It’s when I start thinking about the future that things start racing downhill, and it’s hard to avoid that when I write.

I ended up lowering my dosage of Revlimid in September to 15mg from 25mg.  I find out in a few weeks how that has gone — the first cycle I did of that treatment the numbers dropped, but not substantially.  I’m hoping the numbers from the next blood test are better, since I feel like I’ve paid in blood for them.  Felt like hell for almost a week with some neuropathy and a ridiculous amount of fatigue.  I go back to Arizona on the 16th so I’ll get their opinion as well.

I’m probably switching local oncologists here — getting tired of the minor and major annoyances and outright fuckups I’ve had to deal with lately, culminating in spending 2 hours in one of their offices for a simple CBC test because some orders were put in wrong.  With the Mayo Clinic directing my care anyhow I’m less concerned about having the best local person I can find than finding one who can make my life easier, not harder.  Cancer’s stressful enough without your oncologist making it worse instead of better.

It’s a strange thing that I think most people with diseases like this must deal with — whenever something goes wrong it’s hard not to think “Jesus, I already have cancer, what now?” or something similar.  A lot of times that’s just the pity party talking, but in some cases, like, well I dunno, DEALING WITH A GODDAMN CANCER CENTER, you’d hope people would step a bit beyond the “this is just my day job” attitude and get the work done properly.  It’s not just about giving people drugs.

And I’m checking out some supposedly amazing alternatives.  We’ll see what happens.

Mentally and emotionally the last month has been a roller-coaster, from the trip to Arizona through the vacation I took with my wife and daughter.  It was hard being in Scottsdale again, alone.  It felt like driving through a memory as I went through the neighborhoods I stayed in for months during the transplant.  And not a very good memory, at that.

At the start of November I took a vacation with my family, a Disney Cruise.  When your white blood cell count is low that seems like the worst idea you can have, and I’m not sure it wasn’t, but the cold truth is that not knowing if you’ll be alive next month or next year tends to affect your travel planning.  If I go downhill tomorrow, in other words, at least I got to do this trip with my daughter.

Who won’t remember it, and was somewhat bratty all week, but whatever.  I tried.

Pondering ending my therapy (mental) this week when I go in — I’m not sure I’m getting enough out of it at this point to justify the cost, the time, or what it’s taking out of me emotionally to dig stuff up, and we’re not really so much doing therapy in the sense I’d understand it as I am just unloading so I avoid doing it to my wife.  In the end I have a terminal and somewhat unpredictable terminal disease, and that’s pretty fucked up.  I have narcissistic people in my life I can’t really avoid dealing with, and that’s pretty fucked up too.  I have a daughter that I adore but I worry, daily, I am going to mentally destroy at some point due to my untimely death from this goddamn cancer.

And that’s the most fucked up part of all.

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.

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.

Back at Disneyland.

Forgot my damned Kindle so blogging from my phone instead to pass the time. The infusion center is busy today, but at least it’s fairly quiet.  I’ve talked about it before but the usual symphony of suffering in here just makes a depressing experience more depressing.

I wish I had something to exorcise by writing today but I just don’t … I’m on a fairly even keel as far as things go.  Certainly not happy but not in a dark place by any means.  Just sadly resigned, if I have to “be” something today.
Wish I could be something else … Like not needing to be here, not knowing this world exists.  Most people have no concept of how much their blissful ignorance protects them.  I miss that, perhaps most of all.  Well that and the feeling that I had some control over my destiny and that I could put some faith in probability and causality.
Amy and I were chatting during a walk earlier in the week about curing cancer.  The sad reality is the drug companies really have a financial disincentive to cure this.  My treatment is $10,000 a month, and the next drug they’ll put me on (Revlimid) is $25,000.  Make me live longer?  Sure.  Cure it?  Why would they, so they can ride the accolades into bankruptcy?

Sad state of affairs, especially when it’s my only real hope of survival.

I sat next to a woman today, Donna, who sparked up a chat with me after I offered to get her anything while I was up.  She has breast cancer, which had been under control and then metastasized (sp?) and put her back in chemotherapy.  The latest CAT scan showed it had slowed down to a dormant stage, however, so she was thankful for that.  She was a pretty recent patient too (May), so we had some things and thoughts in common to talk about.  I got the feeling, like me, she hasn’t really dealt with this too much or talked to other patients.  I gave her my therapist’s number after she expressed interest that I thought it was helping me, and hopefully it brings her some peace.  She expressed that she was bitter a lot, which I can certainly understand.

It was odd talking to someone with cancer … haven’t really made an effort to do that for a lot of reasons (most “bad,” perhaps, but mine to choose).  I don’t know that confirming that another person had the same thoughts I did was much of an epiphany but perhaps with some time to ponder today I’ll gain a perspective to grow from 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.

 

24 hours.

Tomorrow I go to Rose’s RMCC to start my second month of chemotherapy and to meet with Dr. F. to find out what impact the first month had.  Pretty nervous about that.

I started up a CaringBridge site again for letting people know what’s going on with my health.  I just can’t see me linking this blog to the majority of people I know — it’s vastly too personal to share with random Facebook contacts.  “Hi, here’s me talking about being suicidal” is not really a facet of my existence I feel like sharing with everyone I know.  I understand that these posts here aren’t locked but they also aren’t linked to me personally — I don’t mind just putting this stuff out there like this because it’s effectively anonymous.  Different email account, etc.  And if some cyber-sleuth is so intrigued they had to Sherlock Holmes this all, well, they could have just asked and I would have let them know it was me anyhow.

My therapist woke me up this morning and told me she was getting a strep throat culture so we should probably reschedule.  I appreciated that, although I had been looking forward to our session today.  Having decided to give antidepressants a try and having had an emotionally challenging week it would have been nice to have someone kind to talk to today.  Ah well.


My parents are being fucking abysmal this week.  Not going into details but what bothers me is their son has cancer and they just cannot put aside their own bullshit and deal with it, and me, on a caring level.  I don’t know if that’s because they just don’t get that I have this, even though they know it’s true (they went to the Mayo Clinic with me) or they’re just not wired right but they are piling on stress to such a level that I’m having trouble dealing with it.  That kind of sucks, you know?  Everyone else I know that is involved in this somehow, from friends to family, is being so nice and understanding, trying to do the best they can.  My own parents?  They just seem to be ignoring it.

It’s hard not to feel like that’s unfair, somehow, but for fuck’s sake, I have cancer.  CANCER.  As in terminal illness.  I’m not asking for anything more than one thing — please just don’t stress me out.  Let me try to heal and make life as peaceful as you can for me by considering what I am going through.  I’m fighting for my life here, man, and more importantly to be Ariana’s daddy for as long as I can.  Why would you risk fucking that up for me?  It’s sabotaging the little emotional and mental stability I am desperately clawing for.

Reason # 5,687,245,908,001 why you NEVER WORK WITH YOUR FUCKING FAMILY.  I’m tied in here by salary and health insurance now.  Biggest mistake I will ever make in my life (knock on wood).  Amy’s convinced they are going to be the literal death of me now.  My therapist feels the same way.

I’m coming around to that viewpoint.