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.

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.

Hi.

It’s been a while, hasn’t it?  I suppose that’s pretty rude of me — when you have a blog about having a terminal disease, vanishing for two months isn’t exactly “nice” to people who get news about you from it.  So sorry, for what it’s worth.  I know anyone I actually know personally that reads this, however, can (and does) text or call to get updates if I’m gone from here too long.

The news hasn’t been good which is the primary reason I haven’t written.  I’ve certainly thought about it a lot these past few months, but this is painful to me — understand that most of the time I keep composed about all of this by doing my utmost NOT to think about it.  I can’t do that when I write, however — it just all comes streaming out and most of this cancer-related stuff is really hard on me, emotionally, to keep going over and over.  But I will try to keep this updated more.

To make a long story as short as possible, I was doing pretty good mentally and emotionally and then I got my 60-day results.  They indicated that the stem cell transplant hadn’t been very effective.  That subsequently sent me spiraling into depression but I still tried to keep my spirits up, telling myself that Dr. M. at the Mayo Clinic had said the 100-day results were really the ones to pay attention to.


Unfortunately, the 100-day results, as I found out the first week of June, weren’t anything to cheer about either.

So, best case scenario at the 100-day was that my bone marrow biopsy indicated I was in remission and I wouldn’t have to do any maintenance chemotherapy.  Next best would be having to do maintenance chemotherapy, which is a low-dose chemo designed to, well, “maintain” things.  Then there’s me — I get to start a full chemotherapy regimen, this time with Revlimid and Dexamethasone.

My wife was NOT excited about the dex.  Apparently I roid-rage pretty badly on it.

Since then I’ve just been trying to keep my head up, you know?  I was in a bad, BAD funk after the 100-day visit.  My doc tried to be somewhat reassuring, but even he admitted this was not what he had hoped for.  He described my disease as “stubborn.”

But all I could think about was my daughter back home.

Here’s the thing, and I guess I’ve written about this before.  I don’t care if I die, really.  I’m certainly afraid of the concept, as much as I can get my head around it (can anyone?).  But it’s not like I would be leaving a personal life unfulfilled … EXCEPT for where my daughter’s concerned.  I don’t have a big bucket list of things that are all that important at the end of the day; most of my bucket list, in the end, is pretty frivolous (dive trip destinations,etc.).  I’ve made great money, and provided for my family financially and with a home.  So I boil it all down and all that is left, with all due respect to my wife, whom I love, is my daughter.  She’s all that makes me smile anymore.  And now here we are again, with me wondering whether I’ll make it to her being a teenager.

I think I’ve written about this before, but the hardest part, in some ways, is the perspective I’m forced into with this.  Take Sunday, for example.  My daughter (with help from mommy) woke me up with hugs, kisses and “I love you’s.”  I’ll never forget that.  Ever.  She, on the other hand, will probably not remember it very long since kids tend to forget everything before age 5.  So the things that are so important to me she won’t even remember.  What will she get to remember?  My last years, when she’s still in single digits?  I’m tormented, haunted by this on a daily basis.  Almost as bad is that I’ve realized there really is nobody who knows me well enough to let her know, later in her life, who I was.  I try, with the letters I’ve been writing her and storing in the lockbox, but that’s not enough.  Who’s going to tell her that I may have failed a lot but I always tried to do the right thing?  About how much I loved diving, or video games, or Iron Maiden?  Who’s going to teach her to ride a bike, or how to play poker well, or how a love of reading will serve her so well?  Who’ll be there for her prom night, or teach her how to drive?  To give her a hug or hold her hand when it’s needed?

The problem with multiple myeloma, especially when it’s being “stubborn,” is statistically the answer to all of those questions is “not me.”  And for some of them the answer’s nobody, and that hurts a lot as well.  It would have been nice if at least she knew who I was.

I know I’m putting myself into the grave with that last paragraph, but that’s the pragmatist coming out.  This is the stuff that keeps me awake at night, every night.

I can discuss my disease with just about anyone without getting too upset — but mention my daughter and I start tearing up, instantly, uncontrollably.  I just can’t handle it.  I take Xanax nightly to keep from waking up at 3 am dreaming about my daughter crying and asking my wife where daddy is after I’m dead.  She asks me every morning where I’m going, and when I tell her “work” she sounds so sad and disappointed when she asks me to stay and play with her and I can’t.  There’s 1,001 more examples I could give, but in the end it’s like none of this is real except where she is concerned.  I still don’t feel sick at all, and as far as I can tell I don’t have any symptoms — had some odd bone pains here or there, but nothing I would be inclined to attribute to more than a bump or spending 5 hours in front of the computer with my forearm in a weird position.  But I’m assured, test after test, that I am in fact dying.

I think about that a lot — I would have no idea, as far as symptoms are concerned, that I actually have terminal cancer right now.  They keep telling me I do, though, and then my heart breaks again for that little kiddo.  I mean fuck me, right?  But she doesn’t deserve this.  She eats well, and she’s polite.  She’s so kind and has been through so much with her cleft palate already.  Why does she deserve to have her father die?

Enough.   I can’t be doing this at work right now.

I got the call today about my Revlimid prescription and I’ll probably be starting it within 3 days now that insurance has OK’ed it ($8,000 a month).  I get to take a host of other stuff with it as well — the dex, as mentioned, baby aspirin to keep from getting blood clots, the anti-viral stuff, an anti-biotic … add those to the LexaPro (which, sadly, I had hoped to get off if I didn’t need maintenance chemo) and the Xanax to sleep and I’m a walking pharma-dumpster.  Joygasm.

I’ll try to update more often.  Hug the people you love, you’d be surprised how fragile and fleeting life really is.