Straightening out the curves.

Thanks to input from a friend I decided to move my blog from Blogger to WordPress, which has been pretty easy.  Not so easy, however, has been the emotional impact of having to go back and read the whole thing to tag everything right, get the formatting fixed, etc.

Whoops.

In doing so, however, I realized there is a lot of information missing, gaps in the story that I should probably fix.  I know I don’t have all of the information some want readily available — I think I’m a bad blood cancer patient, honestly.  Everyone I talk to leads with their numbers like they’re introducing themselves as Patrick McGoohan’s Number 6 from ‘The Prisoner’ … “I am M-Spike 1.9 IgG 2,400,” if you will.  Me, I barely pay attention. What difference does it make?  I know the trends.  I have an incurable but treatable cancer, which sounds good except when you’ve already blown through several treatments in less than that many years you start wondering just how “treatable” it is.  Plus if I knew my #’s better I’d be a walking ball of anxiety.

I often ponder putting together an Excel spreadsheet tracking it all, the typical “hi, I work in finance” answer to the world’s problems.  Much like a surfer waiting for a wave to ride, as anyone who partakes can tell you I’ve been waiting for a good solid Dexamethasone blast o’ energy to do that.  Have a box with all of the lab results and paperwork just waiting for the chemical motivation to kick in.

So of course I just got taken off of Dex.

Someday, Excel, SOMEDAY.

Dex, for those unaware, is the steroid they add to EVERY (seemingly) chemo treatment I’ve seen so far for multiple myeloma.  My understanding is it increases the efficacy of the chemo drugs, allowing for a lower chemo drug dosage?  Either way with very few exceptions I’ve been on this crap for almost four years now, and sometimes if you get the timing down you can be super productive.  I cannot tell you how many times I’ve re-organized our pantries, the garage, the spare closets … great drug if you don’t mind the weight gain and ‘roid rage that accompanies it.

Anyhow, we’ve entered rambling town, so let’s rein it back in a bit.  Like I was saying,  when reading back through things I found a lot of gaps and events that don’t make sense unless you know a bit more about what was happening at the time.  While I don’t write here to tell a clean, linear story, I bow to the logic that one needs to be told at least to a certain degree.  So a few things that I think will help color in the gaps:

  • Diagnosed in mid-2013 when some GI-related blood tests for recurrent diverticulitis showed red flags.  Went to RMCC at Rose for further testing, second opinion at the Mayo Clinic in Rochester, MN with Dr. Arleigh McCurdy.  Decide to have MC “take over” my care with the local oncologist, Dr. Alan Feiner, at RMCC in charge of administrating everything locally.
  • Began CyBorD chemotherapy, consisting of Cytoxin, Velcade and Dexamethasone.  Velcade was done at RMCC at Sky Ridge, the closest RMCC to my office / home.
  • Dr. McCurdy quit the MC for husband’s job but recommended her colleague, Dr. Joe Mikhael, at the Arizona Mayo Clinic.  Went down to meet with him, have him take charge of my care, and plan for a stem cell transplant.
  • Began therapy locally, and eventually anti-depressants.
  • Temporarily move to Arizona in February 2014 for autologous stem cell transplant (“SCT”) at the Mayo Clinic (Day Zero = 2/26/2014, some consider that their new birthday for some reason).
  • Back to Colorado in late March 2014 (30-day post transplant mark).
  • Summer 2014, 100-day SCT results don’t indicate remission, Dr. Mikhael begins Revlimid with Dexamethasone as a treatment.
  • September 2014, lower Revlimid dosage (too hard on my blood cell counts) from 25 mg to 15 mg.
  • January 2015, switch local oncologist from Dr. Feiner at RMCC to Dr. Matous at CBCI.
  • February 2015, Dr. Matous adds Ninlaro (oral version of Velcade) to Revlimid and Dex therapy.
  • Summer-ish 2015, Dr. Matous ends Ninlaro, adds Biaxin for a few months (BiRD).
  • Tried to wean off of Lexapro (the way you are supposed to).  Bad idea, turns out I was relying on it a lot more than I thought!
  • May 2016, start clinical trial for Pomalyst, Dex and ACY-241.
  • Mid-2016ish begin intravenous immunoglobulin (IVIg) since I’m getting sick (pneumonia) on almost a monthly basis.
  • October / November 2016, decide to stop going to Mayo Clinic.

So that should clear up a few blanks, anyhow.  Again it would probably be more helpful if I had all the #’s handy to show my stats at some of those bullet points, sorry.  I also feel like there’s a lot that happened in 2015 as well that I’m forgetting but I wrote nothing down — let’s just call 2015 a rough year and move along.  So mix in 4 hospitalizations for pneumonia in 2016, 3-4 diverticulitis attacks and here we are ready for a stomach surgery and off any chemotherapy (and out of that clinical trial).  That should bring things up to date, but thanks to chemobrain I may add to this later.

Oh yeah, the Mayo Clinic decision at the end there?  Given that I was in the clinical trial this year and Dr. Matous and Mikhael were pretty much eye-to-eye on everything to begin with, I made the call to can the MC trips after having to cancel two at the end of the year due to illness.  I love Dr. Mikhael but it became kind of silly for me to blow $1k or more every three months while in the trial to go down there and have him look over things that we couldn’t really change (since I was in a trial).  Perhaps someday I’ll go back but I have full faith in Dr. Matous and CBCI for now, and if I do another SCT it will be at PSL here with the CBCI crew instead of in Arizona again.

Shame, I’ll miss the banana bread french toast at Butterfields and Z Tejas.  And renting a Mercedes from Sixt — sometimes along with “food for the soul” you need an auto for the soul as well.

I wanted to address something from a comment last week because I’ve been pondering it the last few days.  In it the mother of a friend who is going through chemotherapy for another form of cancer noted that she didn’t know how I could “bounce back” from a failed trial.

Here’s the happy smiley cancer answer, which I’m posting in this blog from atop Mt. Everest after doing a free-climb without oxygen for blood cancers right before a helicopter whisks me away to a raw vegan meal so I have some energy for the 1,000k or whatever marathons are called now I’m running in this afternoon and then tonight where there’s a photo shoot for just my smile because gosh ducky darnit, I’m just so happy and lucky to have cancer and yay puppies!  There’s always another wonderful chemotherapy to try, and we’re all sure the next one’s going to have less side effects and I’ll be on it 20 years from now!  Hey here’s my two dogs now, Hope and Cure, to tell you in doggy sign language about how me having cancer has improved their lives!  So buck up, little trooper, there’s nothing to worry about!

Have you met that person yet?  They always seem fake to me.  I know that’s unfair, but I can’t help it.  Nor can I help wanting to punch them in the nuts.  People like that, in situations like this, make you feel even worse than you normally do in my opinion.  You can’t really say anything either, because we’re all fighting the same battle.  Hell I envy those people, although I question whether they really exist — either way it doesn’t work for me.  Either it feels like I’m lying to myself, or I’m lying to myself.  So how do you really deal with bad news on this wonderful path we’re on?

Anyways, here’s the secret:  I don’t think about it.

So just don’t think about your cancer, folks.  Next question?

Really though, that is the answer.  This is a horror show that never ends.  It doesn’t take a day off.  No matter what I do this cloud doesn’t go away.  It’s in every car I drive, every waiting room, every ceiling tile I stare at in a hospital.  It sits next to me at lunch, picks the radio station and next song on my commutes.  I strap it in right after Ari is in her car seat, and I tuck it in at night right next to me.  In fact there’s only one place I’ve found so far it doesn’t penetrate on its own, and I guard that jealously because it’s the only real relief I’ve had in almost four years.

I will die from multiple myleloma, most likely.  My daughter’s daddy will be taken away.  And if that’s not bad enough, because I’ve always had guilt issues, I feel a CRUSHING amount of guilt over that fact on a daily basis (the daughter bit).  It taints every possible thing I do, bar none.  So I’m driving to, say, work, and instead of the usual daydreams you’d get doing that I get a sudden image of my daughter crying in some hospital about why daddy didn’t take care of himself better so he didn’t die.  Or I replay actual conversations I’ve overheard between my daughter and wife about how daddy can’t play right now because he’s sick and needs his rest (that happens more than I’d like).

I can keep listing those, but this isn’t Monday Depression Spiral with your host, Rich.  How do you deal with the constant stream of disappointment?

Simple. You don’t.

What else can you do?

Should I blast out of my chair in the doctor’s office, shake my fist at the sky and scream “Why, WHY??!!” in some Oscar-winning performance every time we swap to a new chemo?  That just sounds exhausting.  Maybe I could shout about how it’s all so unfair?

So I suck it up, get in the car, try not to think about my daughter and if I do, save the tears until the sunglasses are on and just drive, man.  Music up, all energy on banishing any thought.  Just another day.  Don’t think.  Do.  It’s just a day, just a moment in time.  Because in the end, and this is really the point, I have to function, regardless of what LabCorp or a doctor says.  I have a kiddo, and a mortgage, and responsibilities.

I am going to die from this.

“Oh well.”

Does that seem cavalier?  I’ve been dealing with the concept of my own demise daily since I was diagnosed.  I don’t want to die (well mostly I don’t), but I’ve had almost four years to come to grips with the concept.  I’m not surprised anymore.  Trust me I’ve gone over every possible permutation, scenario … it just doesn’t bother me a hell of a lot at this point.  So what is the point of stressing about a test result, or a new chemotherapy regimen?  I worry more about the logistics and side-effects; the need itself is no longer a concern.

A failed test?  Man I’ve seen so many horrible test results in the past few years it’s almost funny to me now.  “Yep, still on the train to Suckville.  Next.”  What else do you summon in protest when they’re ALL bad, except dark laughter and a few tears snuck in when nobody’s watching?

I have my moments.  I have entire weeks, as my wife can tell you.  But most of the time, regardless of how dark it gets inside, I try to keep it positive.  Who wants to be around negative people all the time?  So I tell black jokes about my health that are probably uncomfortable for people to laugh at (my wife hates those) but make me smile while I try to ignore the situation and just do what I can to make it through the day.  I don’t think more than a day ahead as I’ve found that leads to thinking about things that can blow major holes in the emotional walls, and I breathe a lot.  Lots of sighs too.  You can’t really do anything else.

So that’s the answer.

You get used to it BECAUSE YOU HAVE TO.  Because responsibilities, and guilt, and all the other fun things you’ve brought as baggage (or wreckage) to the party.  Because if *I* can’t deal with it, how will anyone else dealing with my life?

Tony Robbins, I am not.  Sorry.  I’ve been asked some permutation of this almost since the beginning and it’s the only answer that rings true to me anymore.  You deal with it because there’s no other choice.  If you want to take into that cancer fighter’s angst and let the world know how you’re going to beat this goddamn thing, more power to you.  If you want to stay in bed all day bemoaning your fate, hey, that’s your life choice and it’s not mine to criticize — trust me I get it.  Me?  I just try not to think about it.  I already have, do, will.  I’m far more interested in the few parts of my life I can salvage outside of this shitshow than to dwell on it any more than I already have to.

“It” doesn’t get better.  I do, at rationalizing, being pragmatic, avoiding the disasters and trying to stay positive, if possible, but at the least stay standing.  I can’t do more than that.

“Why didn’t daddy take better care of himself so he’d still be here?”

I do that to myself a lot, have that conversation that is. This situation constantly leads to these sketchy little daydreams, envisioning on a micro level what the world will be like when you’re gone. I think I did that before this all began, but death takes on a much more real and imminent feeling with a cancer diagnosis.  It causes guilt, immense amounts of it, that are totally unfair but that you have to deal with.  I wonder sometimes if a lot of folks sadness about cancer comes from that.  On the bright side at least I know this is just a mental game being played and to not wallow in it too much.  But if you can’t accept the truth, as painful as it is, then what can you accept?

It’s because I just didn’t, Ariana.  Because I was selfish.  Because I knew smoking and chewing tobacco was a bad idea and did it anyways.  Because I knew that that food was fucking garbage but ate it anyways.  Because I chose to ignore that all the chemicals and preservatives and food colors were most likely not doing me any favors.  Because I had wifi and wireless signals caressing my DNA for 40+ years and who knows what impact that had.  Because I drank too many Diet Dr. Peppers and touched the wrong bathroom door handle. Because I never thought it would happen to me.  Who knows?  In the end because I was weak somehow, and the giant invisible hand of Darwin or [insert deity here] decided to clean up the gene pool.

And I will be sorry, and feel a guilt so large that nothing can assuage it, every second of every day, until the day they take me from you.  But until then I’ll try to just breathe and do what I can to stick around a lil’ bit longer, spoil you a bit, and see what happens to us.

So here’s to the next chemotherapy, bring that fucker on.

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.

Post-Arizona.

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.

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.

 

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.