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.

Hmm.

Been a few weeks, but certainly some busy ones.

After the first month of Revlimid I had my monthly appointment with the local oncologist.  Although we didn’t know it at the time (took blood tests at that appointment), the Revlimid seemed to be working.  My igG went from 3,996 on April 28 to 2,628 on July 18.  My igA and igM are moving in the right direction as well, and my Kappa and Lambda light chain (free) numbers did too.  This has continued through August’s tests, although not as significant a drop in the igG.

BTW I couldn’t explain those numbers if I tried, save to say they are the 5-6 markers that the doctors track my disease with.

So good news?  It’s impossible for me to be optimistic.  Not that I don’t feel it, I just won’t admit it.  Nothing has really gone right with this disease for me in the last year, and every time I’ve even attempted to summon some hope life has beaten me so far fucking down I’m just not even going to bother.  It is what it is, I hope it continues, and at some point I hope I can reduce the Revlimid dosage.

I had a six-month skeletal survey as well this month and the results were good — no new lytic lesions and no progression on the one I have on my hip.  I was kind of worried about that because I’ve had some weird bone pains in the last few months and I was just waiting to find out my bones looked like Swiss cheese now, but no worries yet.

On to the less fun stuff — so after month 1 on the Revlimid, my CBC test showed that my white blood cell count was extremely low.  As a result the doctor wanted to put me on Neulasta, which helps with that.  As one shot is around $3,000 they had to get approval from my insurance company.  In the meantime I started up the Zometa infusions again (bone strength), which has always had some gnarly side effects.  The first dose is usually the worst, though, so when I got the flu-like symptoms the next day (a Saturday) I didn’t think much of it.

Then the cough started, and my temperature went to 102.  So I started up the Levaquin, per the doctor’s standing orders when I get a high fever.  For the next few days I felt like I was making progress and then that next Wednesday I fell off a cliff.  Zero energy, cough so bad it was bringing tears to my eyes.  We were afraid I might have pneumonia so off the hospital I went for eight hours of tests.  I actually was happy to be there, outside of the inconvenience to my family — they put me on oxygen and Dilaudid and it was the best I felt in a week.  Anyways, turns out I had a viral bronchitis, which took a few weeks to get rid of.

I’ve noticed that the Revlimid’s effects are cumulative, much like the Velcade was.  Towards the end of my last cycle I was really feeling the fatigue, badly, and what’s more the off week (I do 21 days on, 7 off) I felt noticeably better.  Kind of scared about this cycle.  I’m also scared that the rate of motion in my numbers on the next test is going to decrease like it did between month’s 1 and 2.  Because, really, what I needed was more stress in my life.

Mentally and emotionally this has been a bad month outside of my week off.  The time in the hospital and the sick days before it was difficult — feeling so helpless and bearing the full brunt of what it means to have a compromised immune system really drives home how sick you are when you have something like this.  Spent a lot of time on my back thinking about life, and death too.  One sick day before the hospital day (or perhaps after, my memory is going) I watched about 10 episodes of Chopped that I had DVR’ed.  I swear in every other one a contestant chef had a parent die early, usually with devastating impact.

I’m haunted, repeatedly, by visions of my daughter asking my wife “where’s daddy?”  It never goes away.

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.

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.