A Third Option.

So last week I sat down for an office visit with the nurse practitioner, Megan, from my oncology team. We talked about the various problems I’m having, from the full-body pain to the sweats/chills, the severe depression, you name it. At one point she asked if she could give me a hug which is about when I broke down. She also told me that for what it was worth, if I were gone (we were talking about suicide) that I would be missed at CBCI. It touched me. Megan is one of those special medical personnel that actually cares and it comes through every time I talk to her.

She also made good on her promise to try to solve all of these problems, emailing me an action plan and calling me with Dr. Matous on the line later in the day. So here’s what we’re planning on in no specific order:

  • Increasing the hydrocortisone steroid back up to the original dosage to see if it helps with the temperature issues. Which, I’m happy to say, it seems to have had an impact with. Still sweating for no apparent reason at times but it’s not as frequent, and I’m hoping that trend continues. That really was driving me batshit insane.
  • Increasing the Oxycontin dosage from 40 mg tabs to 60’s but only after we give the steroid change a chance to see if it has an affect. Since it has I still haven’t filled that prescription.
  • Lighting a fire under the social worker’s ass I talked to a few weeks ago that never got back to me. By the next day I had a spreadsheet of all of their recommended providers and have already picked a few for my wife to review (going to deal with our marital issues first). Score one for Megan.
  • Check my testosterone level — presumably I’ll hear about this in one of my next visits.
  • Schedule another MRI of my spine to see why I’m still in pain.

I had an MRI earlier that day on my liver to explore what that spot was that showed up.  Turns out it is a benign liver hemangioma, which apparently is a tangle of blood vessels.  Either way she said that was very, very good news. I had no idea how dangerous liver cancer was until looking it up after hearing this (for once I skipped Dr. Google)  so I probably should have been more relieved, but at least it’s nothing serious or that needs to be treated.

I left the oncologist having obviously been crying and had several nurses ask if they could hug me as I made my way out, red-eyed. That made me feel nice, although it was hard — I have such a lack of touch in my life, and in-person caring, that it had a big impact. Not used to people being sweet to me, although I wish I was. Always have, really, I’ve just been too introverted to allow it in my life I guess.

On the way home I got a call from the oncology team with the big news — after reviewing everything, they want me to go back on chemo. One of the only drugs I haven’t tried yet, Carfilzomib, specifically. I’ll be mixing it with Pomalyst and Prednisone — it’s actually supposed to be done with Dex as the steroid but I refuse to take that again, so Prednisone it is. Nashville just isn’t calling and Dr. Matous let me know that he talked to Dr. Morie Gertz, the main guy in myeloma at the Mayo Clinic, and Gertz said the wait list for the trial I want is “substantial.” My doctor is also concerned that I still may not be strong enough for a stem cell transplant, so we’re going to try this chemo regimen.

I’m mixed on it. Part of me is glad just to have a plan, although this is going to be a pain in the ass (Carfilzomib is an IV-administered chemo done several times a week) logistics-wise. But maybe it works, you know? In the meantime there’s more time for spots to open in the clinical trials and for my body to hopefully strengthen to do another stem cell transplant. Either way I’m not in limbo anymore, and I think that status was adding to my mental distress.

On the marital front I sat down with my wife, sometimes kneeling, and worked out a plan to make our marriage a primary focus in my life if she’d give me a chance to prove I’m not the Dex-monster I became for years. Not only was she amenable but since then I can tell she’s working on it as well, and while awkward at times, we’re making progress. We had two dates this past weekend that were a lot of fun, just the two of us, and like I said above we’re going to be doing some counseling to try to fix the main problems. Either way it’s been pleasant for the last week or so and felt like family more than I recall having felt before– there have been times when I’ve felt like I was an enemy combatant in my own home and flat-out hated by my wife.

I just can’t take the cancer PLUS the realization that my marriage is dead — it made me realize I just didn’t have much left to live for without my family, and fueled a lot, I think, of the suicidal and hopeless thoughts I’ve been plagued with for so long now.  This is just too much, too painful, to go through alone or pretending, knowing you are making your partner miserable and that they were, at times, rooting for you NOT to survive. So fingers crossed.  I am trying, and that’s all I can do.

 

Mid-Afternoon Rambling.

Have you ever seen one of those crazy videos where someone’s mountain biking on the top of a mountain with a sheer drop off either side? I feel like that emotionally today.

Not sure why, really. As far as I know I slept OK, although I woke up soaked in sweat. Felt like hell when my daughter woke me up but that’s the norm now. I get up, make some coffee and when it’s cooled enough take my morning medications with it. 30-60 minutes from then I start feeling “normal,” or at least like I can function at some minimal level. Hit Starbucks on the way to work for more go-juice and have just been sitting here, not really accomplishing much, ever since.

My wife had to help me get my socks on today. That’s embarrassing, but kind of her to offer.  I can do it but the yoga involved isn’t fun.  No idea what to do about that (my back) … my flexibility is next to nil and I still have daily back pain. I’m afraid if I go for more testing though they’ll find another tumor or fracture and I just don’t want to deal with that right now. That probably seems reckless but it is what it is. The back surgery I can handle but screw getting radiation treatments again.

I’ve at least gotten a few things done today to clean up the to-do list, like a renewal of this new sleep drug (Seroquel) that the mental health folks in Aurora had me try. Still question whether taking anti-psychotics is the way to go for a sleep aid though, especially when the website says to stop using it if you are experiencing sweating, chills, weakness. Might try a night or two without this one come to think of it, now that I’ve ordered a new bottle of course =/ I was on Zyprexa for sleep before too and it’s the same sort of drug I believe.

Ugh, sweating like a pig. I wish I knew what was causing my internal thermostat to freak out like this but I’ve about had enough now. If I’m not sweating I’ve got the chills. There has to be a solution to this somewhere. I’m guessing either the steroids I’m still on (and will be, apparently, for a while) or the stuff I’m using to sleep is causing this. Would kill for a day without soaking through my t-shirt or freezing to death in a 70 degree house though (for most of my life I thought that was actually too warm).

Got my appointments with CBCI set up with the new nurse navigator and got the status of the liver MRI appointment (waiting to be scheduled since it passed approval in finance).  I needed to call Nashville about my clinical trial status today, damnit. That’s one thing I have to do tomorrow now, all the contact info is at home.

Wish I could bust these blues today.  The last few weeks I’ve felt disconnected, even once the mental wall was rebuilt as the Ambien cleared my system. I know realistically that on a lot of levels that there’s no point to being depressed right now, but I’m having trouble shaking it. I guess it’s just been so long since I’ve felt remotely close to “normal” that it’s weighing too much on me — sick of it. I’d like a day with some energy, no pain, laughs, and not feeling like an outsider in my own life.

I think part of it lately is it seems like a huge portion of my life is spent dealing with this — like all of it, lately. Forgetting for a second the never-ending appointments and trips downtown to the oncology clinic, just the day-to-day constant reminders of the disease — the pain, the pharmacy’s worth of pills I have to take every day, feeling like shit, the depression, the constant anxiety about every little weird physical thing, yada yada yada.

I cannot express how much I envy people without cancer their blissful ignorance of this existence or the lack of these things that they are allowed to take for granted.

Anyways, hopefully the social worker I talked to Friday will come through soon with a list of therapists I can get in touch with, because this has got to change.

Back in Scottsdale.

Sitting in a hotel room less than a mile from the Mayo Clinic, having already done my blood work appointment and trying to fill up the time until I see my doctor tomorrow.  Then home again.

It’s been a long, hard month.  One of the big things I have to discuss with the doctor here is changing my chemotherapy regimen somehow — both I and the Denver oncologist believe it’s too damaging to my immune system.  I’ve gotten sick every month at the end of the cycle since I started the Revlimid, culminating with 5 days in the hospital this month when I came down with bacterial pneumonia.  Either the dosage needs to change or I need a new drug, I guess.

Feeling really fatalistic lately.  On one hand perhaps that’s silly, seeing as how outside of fatigue I still am not sure I’m feeling the effects of the cancer so much as the drugs I’m being treated with.  Still, being in the hospital for a week, getting sick every month … it adds up, mentally and emotionally.  Having my daughter visit when I was in the hospital was really touch — the look on her face, the fear, until I won her over by showing her how I could make the bed move.

I sat today next to a pretty young girl at the Clinic who was with her father.  I watched as she helped him plug in his chair, talked to the nurse — 16, maybe?  I wanted to talk to her, to ask her what it was like to have a father wheelchair bound, sick, but even were it appropriate to ask I couldn’t.  This is the raw vein open, the thing that I keep coming back to.  We talked about it in therapy last week, how I really don’t fear death on a personal level.  I have nothing personally left on my bucket list that means enough to bemoan fate about.  But not being there for my daughter?  The thought instantly shrivels my soul, hurts in a way I can’t express and can’t linger on for more than seconds without dying a little inside.

I was listening to a podcast recently on World War I, and the podcaster (Dan Carlin) was talking about a letter a young British soldier wrote to his wife the night before the Battle of Somme, which the soldier did not survive.  Carlin noted that even were it in the end not neccesary, just the penning of such a letter would scar your soul.  Having written so many of them in the past year to my daughter, I can assure you it does.

Being hospitalized for pneumonia as a cancer patient really had me thinking hard about death lately, compounded by a recent death of a high school acquaintance that left behind a widow and two young children.  A lot about death.  In fact I decided that I wanted that soldier’s letter read at my funeral, whenever that may be, as I don’t think I could really put into words any more effectively exactly how this has all felt, what I live with every waking moment of every day.  I’ll close with that, I think, and update this again when I have something new to discuss.

I do not want to die.  Not that I mind for myself.  If it be that I am to go, I am ready.   But the thought that May never see you or our darling baby again turns my bowels to water.  I cannot think of it with even the semblance of equanimity.  My one consolation is the happiness that has been ours.  Also my conscience is clear that I have always tried to make life a joy for you.  I know at least that if I go you will not want.  This is something.  But it is the thought that we may be cut off from one another which is so terrible and that our babe may grow up without my knowing her and without her knowing me.  It is difficult to face.  And I know your life wthout me would be a dull blank.  You must never let it become wholly so.  For to you will be left the greatest charge in all the world; the upbringing of our baby.  God bless that child, she is the hope of life to me.  
My darling au revoir.  It may well be that you will only have to read these lines as ones of passing interest.  On the other hand, they may well be my last message to you.  If they are, know thought all your life that I loved you and baby with all my heart and soul, that you two sweet things were just all the world to me.  I pray God I may do my duty, for I know, whatever that may entail, you would not have it otherwise.

 

– Captain Charles May, 22 Manchester Regiment
The captain, a former journalist and poet, died the next day.

Beat down.

I feel tired today and light-headed.  Part of that is a lack of sleep — in fact I’m hoping it’s most of it, because if this is the new norm I’m not going to be a happy camper.

That’s part of the problem with all of this — you never really know what the new norm is.  Not to mention between being so sick last week, the Neulasta shot Monday — God only fucking knows what “normal” is like.

Yesterday was a difficult day.  I haven’t seen my therapist for several weeks due to scheduling and health-related conflicts, and as usual the walls fell down and I just core dumped everything that has been going on lately.  Not sure how many epiphanies we really discovered, or perhaps even the value of exorcising all of that darkness yesterday.  It’s all kind of a blur today anyways, fogged by lack of sleep and a workday of putting out annoying fires.

Of note from the session, or at least sticking prominantly in my mind, is my lack of fear of death itself.  Is that strange?  I fear dying, not death.  I don’t want to feel pain, to feel myself slipping slowly over time.  I don’t want to see what it does to those around me who have to bear witness, and perhaps even carry the burden, as my life fails.  I stay awake at night horrified by the thoughts of what a dying father will do to my daughter.

But death, on the other hand, I almost welcome in a way.  Not to sound suicidal, but when you’ve lived so long with this monkey on your back, with these thoughts and pains and horrors and drugs weighing you down as you just try to get to work on time and be a good father and husband, it can sound almost comforting to just be able to put it all down for a while.  Or maybe for good.

I hope this weekend is more cheerful than I feel right now — really down and depressed, and it’s so goddamn hard to find things to be hopeful about lately.

Man.

Tough week, and a hard day.

Had my first therapy session in several months today — my therapist has been checking on me on a weekly basis and we did an abbreviated phone session while I was in Arizona, but we finally got back together today.  Not a fun session — I’m a mess today, for a variety of reasons, and the walls just crumbled.  Dealing with a frustrating problem at work that has dominated my time this week (and will do so tomorrow) which isn’t helping.

I noted during the session that in some ways cats have been a bigger support system for me than people are — not sure if that’s a trust issue or what, but like I’ve noted here before I just get along better with animals, I think.  She said that was a lot more common than I might think, but seemed disappointed, or at least saddened, that I didn’t feel like there was anyone out there I could lean on.  I know that seems unfair to people in my life, at least 1-2 or whom would be happy to step up; I just am not capable of having that kind of relationship with people.  It’s depressing, in a lot of ways.

One thing I noticed while talking to her that I hadn’t consciously realized until today was that my appearance right now (bald) is bothering me so much because it’s a constant reminder of what I now am — I look like I expect a cancer patient to look (well except for my eyebrows still being there).  My wife has noted that nobody notices my haircut (lack thereof) when I’m out because so many people shave their heads these days, yet I have still felt self-conscious.  I guess it’s more that it’s me externalizing (internalizing?) how I feel about this path I’m on and the one I’ve lost.

The unfortunate net/net of my therapy session is a conclusion I’ve drawn several times in the past — that I’m not “suffering from depression,” but am dealing, as normally as possible, with amazingly depressing things.  Not that that is some major epiphany, it simply “is.”  I mentioned that outside of my daughter I’m having severe trouble finding anything that brings me real joy lately, that can break through this fucking cancer cloud, so my homework for the next two weeks is to focus on that and try to figure it out.

Meh.

A Day of rest.

Had nothing scheduled today as we’re at -1 and counting.  They use that scale here if I hadn’t mentioned it … -2 for chemo day, day 0 for the transplant, etc.  Amy said she’d get me a few Gigi’s cupcakes to celebrate my “new” birthday tomorrow.

A nothing day here still consists of tests, vitals every 4 hours, and several drugs taken prophylactically (sp?) for nausea, viruses and bacteria.  I’m also hooked up to a constant IV so I have to pee constantly — I’m sure there’s some value to that but with all of the other information I’ve had to absorb it’s simply slipped my mind.

Had a phone session with the therapist back home today.  She emails me to check in quite a bit, which is nice.  Our session went fine and was only half the allotted time — quite frankly I’m not really that upset or torn up about any of this.  I’d attribute most of that to the LexaPro, a bit of whitewashing from the staff here (not in a malicious or misleading way, they just tend to focus on the best possible outcomes for obvious reasons) and the fact that this is all so fucking surreal.


I mean I’m sitting here at the Mayo Clinic getting a stem cell transplant.  It’s easy to forget that sitting here, if that makes sense.  It’s funny because I’ve spent most of my life training myself, inadvertently, to deal with tough times by tuning them out with something entertaining — a video game, a movie, playing with the cats, playing with Ariana, whatever.  So I sit here, doing stuff like that, and manage to forget the seriousness of it all.  Maybe it’s just too much to deal with in a realistic way, too, and so my mind has just snapped into a defense mechanism where I refuse to “properly” attribute the correct level of seriousness to all of this.

Or perhaps I’ve simply cried all of the scared, horrified tears, played out the scenarios so many times they are now broken records, and realize there’s really nothing I can do.  This will play out like it plays out, period, end quotations, next paragraph.

But yeah, it’s more than just a little crazy, and a hell of lot too real to rationalize on almost any level.  It just … is.  I hope this is a step on the path I began when I first found out about this and realized I needed to mentally get to that place of “yeah, fuck this cancer, I’m kicking it’s ass!”  I’ve moved along a continuum from hopelessness, desperation and fear to resigned … indifference?  That word doesn’t seem right though.  Just resigned, I guess.

The chaplain came by today, a wonderful woman.  Being agnostic/atheist I hadn’t requested the services of one but I enjoyed talking to her, as did Amy (who showed up while she and I were talking).  She said she rarely tells patients this but she’s a Unitarian universalist, something I was totally unfamiliar with but I will be researching more about.  She said they welcome everyone, including atheists, and that it’s more about morality and ethics than some dogmatic faith in seemingly capricious deities.  They welcome any religion, and the more she spoke the more  I enjoyed talking to her and found the concepts interesting.

One of the things that’s been hard about this whole process is how many people have said they were praying for me, and had groups praying for me, etc.  I don’t really know how to respond to that.  It’s just such a nice, selfless gesture, you know?  Even if I don’t understand or can’t feel the religious belief they have I can’t adequately state how much I appreciate the gesture.  Hell some positive energy never hurts, even if I don’t agree with the conduit.

I wish I did.  I was listening to a podcast from atheist author Sam Harris months ago and he noted that the major problem with atheism is you have no mechanisms to deal with death and suffering.  I.e., were I a good Catholic, whatever that really is, I could seek solace in the fact that this is all God’s plan, that it’s not for us to understand or question but just to have faith, and I’d know I’d be going to a better place.

As an atheist you’re just there going “well, um, fuck.”

I tried.  I was raised a Roman Catholic but it never jibed with me, and as I got older and more intelligent and began researching the history of religions to find one that spoke to me I became more and more jaded by it all.  I’ve got books on finding God, and have the best translation of the Quaran I could find on my Kindle (not a fun read BTW).  I’ve read about Buddhism, and once let some Mormon kids talk to me in my apartment (while I drank a beer and had a few smokes, not realizing that was the roller-coaster drop straight to Hell in magic underwear land).  I feel like finding God, or at least some organized spirituality to learn more from, has been a distant hobby most of my life; one of those things you occasionally find in the closet and decide to focus on for a bit like a model airplane or a broken radio you swore you’d fix.  I’ve done that since high school really, when I came to appreciate the inner peace spiritual people seemed to exude.

I studied the bible as literature in college, and for the first time as an adult really read the thing.  Multiple times.  And try as I might I could not get past the story of Job.  That may seem strange to people, especially religious ones, but of all of the stories in the bible the one thing that I can point to as why I cannot follow any organized religion is that story and what it really is saying.

But if that wasn’t enough, next I met fundamentalists, and well, yeah.  Bzzzt.  It’s ironic because just two nights ago Amy and I were at the Villa doing a puzzle and Netflixed a movie called “Revisionaries” about the Texas School Board hearings regarding science text books.  Although fascinating, what blew me away was one of the main figures in the mid-2000’s on that board was a “Young Earth Creationalist” — someone who not only doesn’t believe in evolution but believes the Earth is 6,000 years old.

6,000.

No really.  6,000.

In a position of responsibility to decide what children learn as SCIENCE.

As a parent that is on the short list of things that terrify me along with accidents, boys, hard drugs and the Internet.

So when I say I don’t expect much from talking religion with people, understand where I come from.  Needless to say I wasn’t expecting much when this chaplain walked in the door today but after asking me some questions and hearing my answers regarding spirituality but never being able to find a religion that rang true to me, she didn’t so much give me a sales pitch but just explained what she was about.  So I liked her message and agreed to meet with her tomorrow and let her say a blessing over my stem cells because it’s not going to be about a God but about friendship and love and positive energy, and I think that’s a good thing.  As part of the ceremony she is going to read a Buddhist story, which I think is pretty cool too.

Definitely not what I was expecting of a chaplain here, but this place continues to surprise me.  Everyone is so professional and exudes quality but is friendly at the same time.  It breeds a confidence that I’m in good hands, and that’s really the most important thing.  I’ve experienced some scary health care in my life, even with this cancer diagnosis from excellent doctors, so being able to just relax those anxieties a bit is really valuable to me.

Let’s see, what else.  Couldn’t sleep well last night — when you know someone’s going to wake you up every four hours it adds an odd level of stress to trying to get to sleep when you know you need rest but you aren’t tired.  Plus I’m tethered to this damned IV tower.  Xanax to the rescue.  Not like I needed energy to sit on my ass all day playing SWTOR and watching Ender’s Game over dinner anyhow.

The food here is decent — I had the world’s smallest french dip tonight, but the salad was good.  And my last one for a while — my dietary restrictions post-transplant preclude most vegetables and other things that are at risk of carrying bacteria (washing/cooking deficiencies) as well as eating out.  The chemo hasn’t hit me yet and I feel great today though.  It takes 3-4 days, apparently, but Amy said I looked good today and had good color, so that’s a plus.  Ariana seemed more comfortable on Skype with me as well and said she loved me, which broke my heart.  I shaved my goatee mostly off so the transition to having no hair won’t be as strange for her — honestly out of all of this coming up my biggest concern is not messing with her too badly since she’s too young to understand it.  Thank God Jeff and Amy are here and we have the Villa through March … like I told Amy today, knowing they are all there and Ari’s well taken care of and Amy is relaxing makes being here in the hospital a lot easier for me.

Although if Ariana turns to mommy while we’re Skyping and asks her to change the channel to Curious George again I’m going to get offended, heh.

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.