Monday, December 1, 2014

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.

Monday, September 22, 2014

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.

Sunday, August 24, 2014


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.

Friday, August 1, 2014

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.

Wednesday, July 30, 2014

Monday, June 23, 2014

One down, 729 to go.

Took my first dose of the new chemo regimen this morning.  Revlimid pill chased with a low-dose aspirin, an Acyclovir, a Bactrim and some calcium.

Freaked out, depressed, anxious, you name it.  Questions continually form in my head mixed with doubts that overwhelm slender, battered hopes.  There's just no scarier thing I can think of than chemotherapy ... HIV drug regimens, maybe, but my understanding is that that's no longer a death sentence.  Will this work?  How long until it stops?  Will I have side effects or totally reject the meds?  The mind never shuts down.

Took Ariana  to Tiny Town yesterday ... kind of ridiculous, but I saved the tickets for the train.  Thought I'd insert them in my next letter to her, a little treasure to have along with the words.

Tuesday, June 17, 2014

My mail.

Hate bills?  Be thankful, I get bills and this fun stuff in my mailbox:

Monday, June 16, 2014


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.

Thursday, April 17, 2014


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.


Monday, April 7, 2014

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 Zomeda (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. 

Friday, March 28, 2014

Like I Never Left ...

Back at work today, at least for a bit.  Took yesterday off to get unpacked and rest, but I just had too much to do here to stay away from the office at least for a half day.  Also I feel some guilt over being paid for two months for effectively doing fucking nothing, especially when there's so much to be done.

It's weird being here.  In some ways I feel like I never left, and in other ways I feel like I've transcended this particular existence and am someone else now, someone different.  I'm being handed things like I never left, slipping back into roles I've played for almost two decades, but it feels like a new skin.

I need to start getting in touch with some folks to set up "I'm back" lunches and whatnot, but I think that's going to have to wait until next week.  I feel unsteady being back here, abnormal a bit, and I'd like to get my sea legs back first.  Plus now that I actually look like what people expect of a cancer patient (my hair has continued to fall out and nothing is growing back yet) I'm feeling a bit shy about things.  I know that's silly but there it is.

I miss the cats ... I would have thought two months away from the house would have ameliorated some of that longing, but it's just brutally present when I'm home.  Not sure how to swing getting more since Amy is fed up with pets and seems to revel in the fact that "we're never having pets again."  I don't blame her, but at the same time I'm not sure she understands the importance anymore -- motherhood really re-prioritized things in her brain in terms of animals.

I'm at odds, mentally, with who I am right now.  This is a weird time, mentally, as I won't really find out until early June how effective the stem cell transplant was.  Another waiting game, of which there seems to be an endless supply when you have this disease.

On a totally non-pithy note, if nothing else I seem to have kicked my Starbucks habit.  I still love coffee, I just have brought a French press to work instead.  So now Ariana gets to go to college!

Monday, March 24, 2014

Hittin' the Road

Got cleared by the doc today.  Not only can I eat sushi again, but I can do it in Colorado.  Headin' home.

Saturday, March 22, 2014

Last Night in the Villa.

We leave here tomorrow for a Residence Inn for a few days ... the villa was already rented for the 24th onward.  I'm a bit sad to leave this place, oddly.  It's become a nice, warm home in the past few months, and the site of several life milestones.

I just need to keep reminding myself that the wifi sucked.

Kind of clock watching at this point.  I almost wish I had flown Amy and Ari out Monday night, or at least made a reservation I could change.  I'm going to want to blaze town right after my appointment Monday if I'm released to go home, not wait here another night.  Driving with a toddler, however, doesn't quite work like that.  On the bright side I have a secret plan if he says I can safely eat in restaurants again ... there's a Z Tejas Grill here (several actually) just like they used to have on the north side of Park Meadows near my office (now some average Thai place with above average pad se lew).  I *loved* that restaurant and was traumatized when it closed.

So if I can't hit the road, at least I may be able to get some good cornbread and some catfish beignets.  Life's little victories.

Friday, March 21, 2014

Friday Night.

Home from dinner with my aunt and uncle who winter out here, and just sitting on the couch feeling tired and a bit melancholy.

Had my (hopefully) last appointment with the nurse practitioner who's been checking up on me today.  Numbers look fine according to her, although they have dropped (platelets, red blood cells and white blood cells) below normal ranges.  She didn't seem concerned though, so I suppose I shouldn't be.  I have another blood test Monday before I see my doctor anyhow.

If things go as planned I'll be home Wednesday night.  It seems like a strange concept and place to me now.  So much has happened, and I've been in a bubble here a bit.  Getting back to the real world, so-to-speak, will be odd.  Even more so because Mischief won't be there -- this will be my first homecoming without the cats to greet me and I mourn that.  I'm sad beyond words that I won't be able once things settle down to kick back in my home office chair and have Mischief come bump my chin for attention.  Life really is emptier without him around anymore.

One advantage of just being able to focus my attention on resting and getting strong enough to get home has been the ability to tune out, temporarily, a lot of this situation.  As I ponder my life once I get home I realize that there's no real escape from this.  Just have to be hopeful that things go well and my benchmark appointments (60 days and 100 days post-transplant) tell us good things.

Random thoughts on a Friday night ... oh, since I've been here I've found out a high school classmate, an old friend and the guy who my college girlfriend cheated on me with all have been diagnosed with cancer since I have.  Before I was diagnosed I knew nobody personally who had it, and now I feel like everyone is dropping like flies around me. 

Such a strange thing to have this -- I try to explain it to people but I know it falls short.  The average lifetime experience, seemingly, just doesn't contain these puzzle pieces.  For which I'm glad, even though I know way too much now about what it's like mentally and emotionally (thankfully not physically yet) to live knowing you are being eaten alive slowly; as much as sometimes I wish it were easier for folks to empathize or understand what I'm thinking, in the end I'm glad they don't.  Much like those internet flicks you may hear about ("2 girls 1 cup", that WSJ journalist being beheaded, etc.) you can't un-see this particular world. 

You don't want to go here. 

I don't want to be here, trust me.

Sunday, March 16, 2014

Just Waiting.

Been quiet because there hasn't been much change recently.  I hang here at the villa all day, every day, although it's not too bad.  Quiet, peaceful, and my family is here, so I don't really want for anything.

Had the first really "bad" night last night, which is a shame because Saturday I was doing well.  Couldn't sleep last night and started feeling nauseous around 4 am, and then the dark thoughts just crept in and finished the job.  I guess I've been in recovery mode so hard it didn't occur to me until the dark hours last night that I most likely still have cancer and for all I know the transplant did nothing.  I know that's defeatist thinking, just came out of nowhere.  I've had a pretty good attitude, surprisingly, leading up to this morning so it caught me unawares.

Ah well.  I was expecting ups and downs, so I shouldn't be surprised when they happen.  I have 4 appointments left and then hopefully we'll be heading home in a week.  The thought seems strange, somehow.  I crave nothing more than the normalcy of my old life but I just don't think it exists anymore.

Tuesday, March 11, 2014

Thinking Back.

 An off-topic post today.  Sick of cancer, glad to be "home" as it were, and hoping I get the thumbs up on the 24th to beat a hasty retreat to our real home and try to lose myself in the mundane.

Thinking about Fear and Loathing the other day brought back a lot of memories -- HST is easily one of my favorite authors, if not the favorite, and favorite journalist by far.  I think a lot of folks, especially on the hawk side of things during the 70's, ignored or never recognized his genius and preferred to focus on what they thought they could handle and understand.  But nobody saw the world, and could relate it, the way he could.  It always brought to mind those conversations you have as you sober up and are watching the sunrise, the combination of chemicals imbibed leaching out and exhaustion giving you some minor epiphany about THE WAY THINGS WORK.

So one of my favorite passages (from the book, not the film).  I can get back to the doom and gloom another day.

Strange memories on this nervous night in Las Vegas. Five years later? Six? It seems like a lifetime, or at least a Main Era—the kind of peak that never comes again. San Francisco in the middle sixties was a very special time and place to be a part of. Maybe it meant something. Maybe not, in the long run . . . but no explanation, no mix of words or music or memories can touch that sense of knowing that you were there and alive in that corner of time and the world. Whatever it meant. . . .

History is hard to know, because of all the hired bullshit, but even without being sure of “history” it seems entirely reasonable to think that every now and then the energy of a whole generation comes to a head in a long fine flash, for reasons that nobody really understands at the time—and which never explain, in retrospect, what actually happened.

My central memory of that time seems to hang on one or five or maybe forty nights—or very early mornings—when I left the Fillmore half-crazy and, instead of going home, aimed the big 650 Lightning across the Bay Bridge at a hundred miles an hour wearing L. L. Bean shorts and a Butte sheepherder's jacket . . . booming through the Treasure Island tunnel at the lights of Oakland and Berkeley and Richmond, not quite sure which turn-off to take when I got to the other end (always stalling at the toll-gate, too twisted to find neutral while I fumbled for change) . . . but being absolutely certain that no matter which way I went I would come to a place where people were just as high and wild as I was: No doubt at all about that. . . .

There was madness in any direction, at any hour. If not across the Bay, then up the Golden Gate or down 101 to Los Altos or La Honda. . . . You could strike sparks anywhere. There was a fantastic universal sense that whatever we were doing was right, that we were winning. . . .

And that, I think, was the handle—that sense of inevitable victory over the forces of Old and Evil. Not in any mean or military sense; we didn’t need that. Our energy would simply prevail. There was no point in fighting—on our side or theirs. We had all the momentum; we were riding the crest of a high and beautiful wave. . . .

So now, less than five years later, you can go up on a steep hill in Las Vegas and look West, and with the right kind of eyes you can almost see the high-water mark—that place where the wave finally broke and rolled back.

Monday, March 10, 2014

Home, Day 12.

Although I still have this fun full body rash I was released today.  I won't wax poetic about what the hug was like when Ariana woke from her nap and I was there ... Use your imagination and know I had been looking forward to that for two weeks.

What I didn't anticipate was just the pure pleasure of sitting on the patio, smelling fresh air, feeling a breeze on my face again.  

Sunday, March 9, 2014

What? No. We can't stop here. This is bat country.

I'm sure the nine-day gap between these posts has been frustrating for folks playing the home version of "Rich Has Cancer," but they just haven't been writing days.  Starting around Day +4 I began feeling the side effects of the chemotherapy, and while mild they were constant and annoying.  Chronic fatigue, nausea, you name it.  I was hooked up to an IV line for the majority of this time being pumped full of liquids only to be told I'm retaining too much liquid and then given drugs to remove the problem manually.

My White blood count (WBC) hit 0 by around Day +8, and then I had to start infusions of platelets and then red blood cells to keep my other counts safe.  I was miserable by now but I couldn't sleep due to discomfort and bloating so I had to be drugged to sleep with Ativan.  I spent several days in an Ativan coma, just waiting for the next dose so I could sleep again, until they decided to ween me off.  After the red blood cell infusions I also picked up a full body rash, some sort of allergic reaction that seems to want to hang around for a bit.

And today I make the call and shaved my head -- tired of watching my hair fall out.

Anyhow not much to say ... my wbc hit .8 today, which is a big jump from 0, and hopefully indicates I can leave the hospital this week.  I'm eating amazing well, mostly fruit, but all clean healthy food.  Totally sick of the hospital although I have loved a few of the nurses and owe a few some aquarium dives when I get back home.

But that's the executive summary ... given the things I was dreaming and daydreaming about in the last week while in the throes of this fucking monster, blogging it would be like trying to explain everything in the hotel room in Hunter S. Thompson's "Fear and Loathing in Las Vegas" right before Hunter and Duke flee.

When I came to, the general back-alley ambience of the suite was so rotten, so incredibly foul. How long had I been lying there? All these signs of violence. What had happened? There was evidence in this room of excessive consumption of almost every type of drug known to civilized man since 1544 AD. What kind of addict would need all these coconut husks and crushed honeydew rinds? Would the presence of junkies account for all these uneaten french fries? These puddles of glazed ketchup on the bureau? Maybe so. But then why all this booze? And these crude pornographic photos smeared with mustard that had dried to a hard yellow crust? These were not the hoofprints of your average God-fearing junky. It was too savage. Too aggressive.

Friday, February 28, 2014

Day +2.

It's hard to describe not finding the time to write when you are trapped, effectively, in a hospital room with a laptop.  Not really "not finding the time" as just not wanting to, I guess. 

Feeling OK, although getting more fatigue and some slight nausea tonight.  Mostly getting a tad stir crazy, missing my daughter more every hour.  Struggling with what I'm doing here, what's happening to me, the looks of sadness and incredulity I seem to get from everyone for a variety of reasons.

Family has started coming into town to visit, which is of course appreciated.  I think they expect me to look more like something out of Schindler's List than I am, though.  Hair's still connected and they have me on so many drugs that make you retain water I feel like the Titanic.  People don't know what to say, and I get that.  Been dealing with that reaction since this all began.

Trying to keep my spirits up -- the first few days it wasn't too bad but there's just no way to sit here, day after day, hour after hour, through the tests and rounds and being woken up and the drugs and the IV and not start really figuring out where you are in life.  And where I'm at tonight is not home with my wife, and trying desperately to remember what it's like to feel my daughter's breath on my neck when she gives me a hug.

I want to go home.  I don't want to have cancer anymore.

Wednesday, February 26, 2014

Day Zero.

Not going to write too much tonight -- tired and it's been a long, but relatively pleasant, day.  The transplant went fine.  Had a bunch of fatigue afterwards most likely brought on by the cocktail of drugs they were giving me while doing the transplant (benadryl, etc.) but had a nice dinner, Skyped with Ariana and Amy, talked to my folks and have been just taking it easy and trying not to worry about what's coming next.  I guess the chemo starts to kick in pretty soon so it's a waiting game now.

I'll try to post some pics tomorrow and go into more details, just sort of tired and been inside my own head about all of this too much today to want to go over it all here.  Very surreal experience.

Tuesday, February 25, 2014

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 alloted 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.

Monday, February 24, 2014

What's For Dinner ...

Let's Get Ready to Ruuuuuuumble ...

Typing this from my hospital room; checked in around lunchtime today ahead of doing my chemotherapy tonight.  The drug of choice this evening will be Melphelan, which is categorized as a high-dose chemotherapy.  They do cryotherapy along with it as well, which is a fancy way of saying I chew on ice for 30 minutes before the infusion, during the hour-long infusion, and for 30 minutes after.  Apparently this significantly reduces the risk of developing the mouth sores common with this chemo regimen.

Said goodbye to Ariana today.  I think that will be the hardest part of this in most ways.  I can handle the pain, the illness (at least I believe strongly that I can) but missing her ... man, that's hard.  I was breaking up last night doing her bath and reading her a bedtime story as I realized it's the last time I get to do that in person until almost mid-March.  Seeing as how two nights is the longest I've ever been away from her this will be the true test of fortitude.

Jeff, my wife's step-father, got into town Saturday night.  He's so good with Ariana it's almost laughable and she loves him, so I know not only is she in good hands but that it will take a huge load off of Amy's shoulders.  We went to Fogo de Chao last night as a treat and a "last supper" sort of meal, which was awesome, and followed it up with a good breakfast this morning at Over Easy North.

Today I do a ton of testing so they can make sure I'm not infected with anything, and then off to chemo.  Wish me luck.

Thursday, February 20, 2014

Stolen Naps.

Ariana has skipped her naps for the past two days.  I, on the other hand, have taken one for the past two afternoons.  I think it's partially due to the Neupogen leaving my system and partially due to increased activity -- we're doing a lot more lately to maximize my fun time with Ari, so the last several days have been a whirlwind of eating out, going to the zoo, going to one of those bounce houses with wall-to-wall trampolines, etc.

Nothing much new on the doctor front.  We met with Dr. M. for a final pre-admission office visit on Tuesday.  He reiterated that everything looks good, called me an overachiever for collecting enough cells for three transplants, and walked us through the tour de suck (my phrase) of how I'll be feeling in the hospital and when.  Apparently 8-11 days post transplant are when it's going to feel the worst.  I'd have to check my schedule but given my luck in the last year that's probably when I told most people to visit.

On the bright side he lightened up on the "how it will be post-transplant" speech and said I should be fine, just avoid sick people and buffets.

I'm scheduled to get a PICC line in my arm (maybe they always go there, no idea) on Friday, and then I'm admitted to the hospital Monday.  Crazy, and kind of scary.

Missing Mischief and Trouble a lot lately.  It feels so odd, not having cats, and hits me at weird times.  I must be dreaming about them or something because I tend to feel the worst about it when I first wake up.  I've lost a few cats over my life but have never felt like this before; I mean I've always been crushed, but this sense of loss is truly overwhelming and it's been a while now.  I have a digital picture frame that I loaded with photos of Amy and Ariana and one of me and Mischief at the hospital before he was euthanized, and it breaks me down every time it flicks across the screen.  I think I see him curled up on the bed for a moment one afternoon, but it's just my black fleece.  I keep expecting to find him in my laundry basket, or to come running when I open something that crinkles or has a noisy lid. 

I had hoped that being in a new surrounding like this, instead of being at home, would alleviate this to some degree but it isn't.  On the bright side Dr. M. prescribed me some Xanax to help me sleep through the night again (stopped doing that in the last week) so at least I have another pill to combat it.

Sunday, February 16, 2014

Quiet Sunday.

Got another 4.6 million stem cells yesterday so they pronounced me finished and let me get my catheter line taken out today.  Wasn't too painful although I probably should have skipped looking when the nurse asked me if I wanted to see it.  Shnikes.

So 10 million cells harvested, well above the 6 I was shooting for.

Had to take it easy after I got home because with a borderline platelet count (borderline as in any lower and they would have given me some) this won't heal as fast and can be serious if it rips apart or gets infected.  No lifting heavy stuff, no bending over, etc.  No showering either until at the earliest tomorrow morning, which is getting old.  Need a shave as well.

I only have two more appointments before I go into the hospital and start the chemotherapy at this point -- a pre-admission office visit with Dr. M. and to get my PICC line installed.

As it gets down to the wire I'm getting more and more nervous about everything coming up.  As with previous milestones in this treatment, things are about to ratchet up the seriousness quotient again. 

Woke up this morning having thoughts about Mischief as well and how much I miss him, which hasn't really helped either.  Wish he was here.

My thoughts are disjointed, sort of like this entry.  Trying to figure out what to do with Ariana this week since when I go into the hospital a week from tomorrow we won't see each other for almost 3 weeks (she can't visit me).  Maybe we'll go to the zoo or something -- like to maximize my time with her, and I need to write her another letter this week too.  Amy's step-father gets into town Saturday which will be great -- not just to get some help, but we've got a fun dinner out planned (Brazilian steakhouse) and I know Ari will love seeing her grandfather.

Sad today, for whatever reason/s, and just can't shake it.  It's been creeping up slowly but surely lately as I get closer to going into the hospital.  It's easy, even when laying there being harvested, to forget what you are there for and what you are doing.  As I've written before, however, when the reality comes crashing back it can be pretty brutal.  Not sure there's ever any escaping that, any normalcy to be found here if I look too hard. 

Just another cancer patient looking out from inside.

Saturday, February 15, 2014

Last Day Harvesting (hopefully)

So yesterday was pretty mellow.  Harvesting doesn't hurt, you just lay there, and with a laptop and a good wifi connection that was fine.  Relaxing, really.  Unfortunately I needed 6 million stem cells and got 5.65 million, so I had to come back today for another session (and another Neupogen shot).  Only real bummer is now I won't get these damned lines out of my neck until tomorrow at the earliest, although I'm hoping they can do it later today if the labs test my collection bag in time.

Friday, February 14, 2014

Here We Go ...

My labs came back this morning and there's enough stem cells in my peripheral blood to start harvesting, so a' harvestin' we shall go.

Sorry, I got a whole 3 hours of sleep last night between the lower back pain from the Neupogen and having the catheter lines and dressing on my neck.  

Thursday, February 13, 2014


Sitting in the waiting room at the hospital to get my catheter line stuck in my neck. Already had labs done and my daily Neupogen shot ... Had to double-up the Oxy last night just to get to sleep.  The pain is lower back and hips this morning -- walking and feeling like an old man.

I know I made the right decisions about having Amy and Ariana here, but having to go to appointments like this next one without Amy's hand to hold is kind of tough on the soul.  I don't want Ari around here though and she can't go to a lot of these anyhow.  Amy found an indoor play place for her this morning and while I'm lonely, it makes me happy to know she's going to be somewhere giggling instead of in a waiting room.

And I may be able to parlay this into an In-N-Out stop on the way home.

Talked to my mother yesterday ... I didn't even get into it here but my parents were in a head-on 50 mph collision on 285 several days ago when a propane truck heading the opposite direction decided to turn right in front of them and then even more inexplicably stopped.  My dad fucked up his back but mom fractured both legs and will be hospitalized for quite a while.  Her surgery went well thankfully, but they've definitely got her on the good stuff drug wise.

Wednesday, February 12, 2014


So yeah, as forewarned was possible the Neupogen shots are causing severe pain in my upper legs and hips.  Thankfully Dr. M. prescribed me some just-in-case Oxycodone which has taken the edge off and got rid of the jaw pain, but legs are still driving me nuts.  Grrrrrr.

Get my catheter lines in my neck tomorrow morning.  Because what else could be more fun on a Thursday?

Took this this morning on the way to get my shot.  This is the hospital in Phoenix where the majority of this stuff gets done to me.

Tuesday, February 11, 2014

Enough With the ...

... shots in subcutaneous fat.  Seriously.  At least these weren't in my stomach like the weekly chemotherapy shot of Velcade, but still.  Two full syringes of Neupogen in your arm is a shitty breakfast.

Thursday, February 6, 2014

A Few Days In.

It's Thursday night, and taking a moment to get caught up here before dinner.

Had most of today and yesterday off after a few days of tests, re-tests, various meetings, etc.  A buddy from Parker happened to be out here Tuesday for work so we went to get some sushi, which was nice, and last night a longtime friend of my wife was out here from Colorado Springs so she came over to the villa for dinner.  I still need to hit In n' Out but it'll happen before I go into the hospital.  And Mastros.

Ariana has slept well the last two nights -- not so much the first 3, so that's good.  She seems to be teething a bit and that plus a new place was quite a bit for her to deal with.  She's still a lil' crabby but hopefully will get back to normal soon.  We all took a walk today -- probably mentioned it but Amy found a place that rented us a crib, stroller and some toys for her, so we busted out the stroller and got some exercise in.

Had a class today with a 15-year nurse in the program about the transplant.  No real news to me but was interesting.  Hard to believe this is really happening.  She went through all of the side effects and what to expect -- sounds like the chemo is going to fuck me up pretty good and then the week or two without an immune system is supposed to suck.  But they have wifi and an exercise bike sorta deal in my room, so whatever.  A few weeks of hell for several years of remission is a small sacrifice.

The manager here at the Normandie cut me a deal on March, so we're going to keep the villa for another month.  That gives Amy some freedom to leave things here if she goes home and to stay if she wants, and takes the pressure off of having to find a place to stay for 2-4 weeks after I get out of the hospital in mid/late March.

Doing OK mentally and emotionally for the most part.  As I get closer to the cell harvesting I feel a bit of walking to the gallows-ish though.  And I miss Mischief.

In other random news one of my best friend's mother died this week.  It feels bad being out here with that having happened, impotent to do anything.  And then I get a call today and my parents were in a head-on collision on 285 at 50 miles an hour -- a propane truck turned right in front of them.  My dad is bruised and my mother broke both her legs and has a compressed disk and is being monitored for internal bleeding due to the seat belt.  Guessing that means they won't be coming out when I'm in the hospital, which is a bummer.

Sunday, February 2, 2014

First Night in the AZ.

Got in about 6 pm tonight ... not a fun drive but not too terrible, and did 85-90 the whole way so it didn't take as long as it could.  The villa rocks, feels right.  Amy had found a place online that rented us a crib and a bunch of toys for the month so while I unloaded the car Ariana was tooling around the carpeted garage in one of those Flintstone-type red and yellow plastic cars.  She zonked out bigtime after a tiny dinner -- she didn't sleep well last night and woke us up at 11:30 pm for an hour so neither did we.

Drive down was fine ... we had snow all the way from Denver to Las Vegas, NM, but nothing too terrible.  We stayed in Amy's aunt's place in Santa Fe for the night and then did the rest of the drive today.  I drove the whole way, was just in the mood to floor it and zone out.

By the time we got unpacked and Ariana fed and tucked away it was too late to go get or cook dinner, so we snacked and said fuck it tonight when Maggiano's failed to pick up the phone.  Dicks.  The temptation to make an In N' Out run was almost too much but after a shower and with this nice big warm laptop on my lap I don't even want to get out of this recliner to grab my glass of water.

Will update more this week.

Friday, January 31, 2014

Last Day in the CO.

Sitting at work, frustrated simply due to trying to trade municipal bonds on a Friday.  I should know better, but I can only chalk that up on the list of things that I used to be good at remembering and now, probably due to chemotherapy, I forget.  It's weird, having a life centered around being cerebral, and then having that fail on a regular basis.

We leave tomorrow, assuming the weather allows us to.  I'll be taking a very expensive flight Sunday if it doesn't, I guess.  Not too worried though -- roads were fine today, albeit icy, and all we have to do is get about 1/3rd of the way there and it's smooth sailing.

Tuesday, January 28, 2014


Been a tumultuous couple of weeks but figured I should jot a few things down.

Wednesday, January 8, 2014

RIP Little Friend.

I had to have Mischief euthanized yesterday.  His kidneys failed and even with a ridiculously expensive surgery there wasn't that great a chance.  I went over to say goodbye and give him a few last kisses and hugs yesterday afternoon.

You think, when you are diagnosed with cancer, that at least there's not much worse than can happen to you.  But there always is, isn't there?  I feel detached now, like a balloon that just popped another hook holding me back from floating away.  In the 11 years I had that cat he was a teddy bear, a therapist, a constant comfort, my best friend, and so much more -- everyone who met him loved him and thought he was the most amazing cat they had ever seen.

And right when I need him the most, when everything else is going to shit around me, he's randomly taken from me.

I think I'm in shock.  My marriage has been pretty rocky since all of this started, and without a ton of close friends to lean on I've been forced to rely on whatever I could safely get to pull myself through the dark times.  I could always count on Mischief's purring or the feel of rubbing his neck fur to calm me down and balance things.  There's something to be said, a lot actually with a disease like this, to just have something that loves you for you and doesn't care about anything else except to steal a little warmth and a head scratch.

Months ago I was having a beer with a friend on my back patio and talking about cancer and all of this, and we were talking about religion.  Jim mentioned that he held out hope that when he died he'd be reunited with his deceased father.  I never put much stock in stuff like that but I told Mischief last night, quietly, that if there is a place like that, and he can't find anything better, that I hope I'll get to have him fall asleep on my lap again someday.

Goodbye, little one.  You were a better friend than I probably deserved but I will always appreciate that you shared your life with me, from the moment you picked me out at the DFL until we said goodbye.

Tuesday, January 7, 2014

And the hits just keep coming.

I made it through the holidays.  It wasn't easy ... it wasn't going to be, that was obvious.  My daughter had a good time and that's all that matters, really, even if I had to fake the holiday cheer bit personally.  It's impossible to describe to those without the knowledge of what standing in terminal shoes really feels like to explain how the taint creeps in, how often unbidden thoughts come of "how many of these will I have left" and "what will these days be like when I'm gone for those left behind?"

I didn't write here because it's just too painful for me.

I am waiting for the Mayo Clinic to look over my latest test results to confirm they are still doing the transplant in February -- there was a paperwork snafu, as usual, so it's being dealt with late.  I am hopeful that I can get down there to meet with the doctor and the logistics folks before things start.

Oh, I discovered last chemo day something new and even more depressing than previous discoveries -- I was sitting there next to a pregnant woman.  If there's one thing an infusion room is good for it's to remind you of how fucking awful cancer can be.

I feel like I'm in some sort of toxic orbit right now -- the last few years have been so painful, with one thing coming after another, and there seems to be no let up.  2013 was fucking terrible, so obviously my family was hoping for a reprieve in 2014.  But here I sit today waiting for news that won't really make a difference about my cat, Mischief.  He was acting funny last night so I took him to an emergency vet and sure enough, he's in kidney failure.  They are doing more tests but there's no way I can afford an estimated $8,000 surgery for a cat so regardless of what they find I'll probably be going over there later to say goodbye today.  I've had several cats but he was truly a one-of-a-kind animal -- outgoing, friendly, and a teddy bear to my daughter.  And me.

I'm sick of feeling like life is unfair.