Mental Sewage.

Another day passes.

I was supposed to begin the second cycle of my current chemotherapy today (Cytoxin, Carfilzomib and Prednisone) but I’m so beat up that Dr. Matous is giving me a week off.  We’ll find out mid-week how effective the first cycle has been.

I’ve been withdrawn, well, really in a lot of ways since I got the bad news about my CAR T results from Nashville.  I hadn’t realized quite how much hope I had put into that whole deal until it came crashing down. I know I’ve harped on it here a few times but I keep coming back to it, the day hope died for me. Now I just feel like I’m a one-person time-bomb who can’t see the timer. Place your bets, kids, there’s plenty of squares left.

I set little goals for myself, morbid as they are. I had to live through a week ago because I closed on a refi that completely got my family out of debt, so there won’t be any hijinks when I’m gone. I have to live through the 5th of September because I redid my will and all of the trusts I just set up for my family need to be signed for. There’s more, a mental list, but I’ll be honest — they don’t go too far out. I feel too fragile for that and certainly that has played into a despair I can’t shake.

I’ve only slept well in the last month the last two nights thanks to taking 50mg of Benadryl  at night (with a Xanax chaser and a toke or two some nights). Probably not the smartest chemical diet but there’s this weird place you get when you’re terminal where safety just gets put aside. Seat belt? Laugh. The only reason I wear one anymore is because the beeping annoys the shit out of me. Mixing Opiods (Opiates? Whatever, screw your accuracy)  and Xanax and pot? Well, maybe one of them will knock me the fuck out so I can stop thinking and get 4 hours of sleep. Yes how terrible it would be if I didn’t wake up and cheated cancer of slowly eating me alive for another unspecified period. Or hell, just so I could GET to sleep and shut my goddamn brain off for 10 seconds.

SO I CAN STOP THINKING GOD DAMNIT.  CAN’T YOU UNDERSTAND?

My brain is my worst enemy. Sure the cancer’s killing me but my brain is running the Howard Cosell constantly (not with his accent, but you know what I mean). It’s ruined me, and really THAT is the battle with cancer that I’ve lost. I mean you get cancer and you’re fucked, we all know that. At some point you’re just going to lose, odds-wise. But what makes is truly miserable are those voices in your head. My personal favorite is the constantly-repeating image of my daughter screaming “I want my daddy!” after I’m gone. Over and over and over and OVER AND OVER AND OVER AND OVER AND OVER AND OVER AND OVER AND OVER AND OVER AND OVER AND OVER AND OVER AND OVER AND OVER AND OVER AND OVER … get the point yet?

I don’t know how to put that aside. Over five years of this disease slowly sapping away my life, my sanity, my personality. It’s not really how I wanted to be remembered, a shell of a human, but it seems like a one-track destination. I’m zombie’ing days away just trying to live another day.

And for what?

Well, for who, you know that Rich. But at what point do you become the albatross you used to write about? To everyone, to everything you know?

I feel like her defender lately, as if I suddenly understand her better. We’ve built this bond recently. Of course that can be a double-edged sword.  I asked my daughter last night why she told her mother she didn’t want to go for a walk with her and she told me “because mommy didn’t break her spine, or spend all that time in the hospital, and I didn’t want you to be lonely.”

If she saw the tears she didn’t say anything. I’m so glad I got cancer so I could have moments like that with my child.

Anyhow her mother is frustrated with her and a little short-tempered lately. Ariana is in a “phase” I guess. That’s one of the other fun problems with cancer the pamphlets don’t tell you about, kids. See our daughter’s therapist believes some of her acting out comes from my illness. So I get to see, firsthand, how I’m fucking my own kid up. I can’t tell you how awesome that is. Even though I know some of it is in fact just a phase.

But she and I are closer lately, anyways. Mostly because  I sneak her Blow Pops that I order on Amazon and hide in my desk. What the hell do I care? At least she can remember a daddy that broke the rules when her mother was gone to share a sucker with, I guess. I’m fighting for the inches now, praying she’ll remember this or that, or not this or that as the case may be. It figures that the exhaustion from the drugs and disease is so strong, so that I can’t even fully  enjoy these last moments. Not with dad, the gimp. He can’t feel his feet anymore or get out of bed half the time. Quite the epitaph.

Ironically my weight is at a nice spot now, although between the fact that I shave my head and the gaunt look to my face lately I feel like a double in Schindler’s List. I just don’t feel hungry anymore, except for the frozen fruit I take to bed at night as a snack. It scares me sometimes because I know I can’t heal without sustenance, but I just don’t want anything. Hell I’m taking a Zofran a day right now just to combat nausea, the last thing I want to do is eat.

So none of my clothes fit and I look like an idiot now. *thumbs up* I can’t even wear stuff I wore on my honeymoon without a belt, which is impressive (and shows you how often I throw shit away, since those haven’t fit, since, well, the honeymoon). On the bright side I can take my pants off without unbuttoning them. On the not-so-bright side if I don’t cinch my belt tight enough they do that when I’m walking into my office building.

Maybe I’m just pissed because I’ll be dead before Cyberpunk 2077 comes out. You never know with me.

Screw “hope.”

How’s that for a title to set the tone?

I’m not that anti-hope, really.  It’s just … man everything is making me tear up today, and I’m fighting off a serious depression which I always find awkward. Hiding the sniffles and pretending it’s allergies or just “nothing.” Trying not to think about anything remotely sad (impossible for me, since even kindness makes me sad on days like this). Work is kind of a shitty place to just have tears start rolling down your cheeks.

Been like this off and on for a few days now. I don’t think it’s so much drug-related as just a hardcore realization of where I’m at in life, where I’m going, and how much it all sucks. I guess better this way at the start of a new chemo regimen than all hopeful just to subsequently get emotionally crushed like a bug like I did by that clinical trial though, eh?

Started up a new chemotherapy this week — Carfilzomib, Cytoxan and Prednisone (I refused the Dex so we substituted that). I can already feel it in terms of fatigue; the last two nights I have gone to bed pretty early and slept great, but can’t get up. After five years of this you start noticing little things about your body a lot more than I think normals (those of you without cancer) do. There’s something different keeping me from waking up in the last two days, I can just tell.

My shoulders are still a hot mess — I don’t see any way around getting some x-rays or something done as they hurt constantly and my range of motion is severely shortened. Feet are still numb, and I’ve noticed on our nightly walks that if I walk too far the numbness starts creeping up my legs until I feel like I’m going to fall down. My knees and hips feel extremely weak at that point too. In the hopes that this has more to do with not getting a ton of exercise or something I’ve still been going on the walks, but I’m concerned. And it’s typical — it’s not bad enough that my mind is ripping me apart, waves of depression taking down the wall I’m frantically trying to fend it all off with, but then I get these pains and aches on top of it all.

Because I’d feel pretty decent right now if it weren’t for the shoulders and feet/legs, and we can’t have that. Oh no, no respite for Rich.

Sorry … that’s dipping into the self-pity a bit much. Which I’ve been doing a lot lately, I realize. I can’t help it. Still blown away that I got no results from that clinical trial, in disbelief after all of those trips and tests and hospital time and uprooting my family that I got NOTHING from the bleeding edge of cancer research. It’s hard to explain how disappointing that is. I try, but it’s like trying to explain a color or smell — people just don’t get it. Not sure I do either. I was so sure that was the answer that I allowed hope to creep in — let myself imagine me doing normal life stuff again, whatever that means.  Vacations, things with my daughter, diving.

And it hurts seeing others getting amazing results.  I’ll admit it.  I just wanted to have some too, sorry. I went through all of the same stuff, how come it didn’t work for me?

*sob*

As any terminal can tell ya’, “hope” sucks. Hope ruins you. Because we’re always one test away from hope destroying us, you see?

Maybe you don’t. Probably better you don’t. I envy people their ignorance of this world. All I know is I allowed hope to enter my thoughts again and then got destroyed, and I’m still reeling from it to the point that I can’t even find it in my heart to be happy for those it’s worked for. And that sucks, man. It makes me feel like the shittiest human being ever. But I can’t help it. I wanted more time with my daughter, don’t you understand?

I should probably end this there if I wanted a clean, pithy blog entry, but I have all of these random thoughts in my head.  The only one that appears at the moment, however, is how this week Facebook reminded me it was my friend Julie’s birthday this week. Except Julie died a year ago from cancer. I guess nobody ever adjusted her FB page or anything you can do when someone on there dies. It was quite the brutal slap in the face, though.  RIP, you.

Had a friend in town this week offer, when she heard I had chemotherapy on Monday and Tuesday, to drive me to one. Was amazing just having someone there to talk to, someone who I knew cared, to take my mind off things. I always would see people with friends in infusion centers over the years of doing this and quietly sigh that those closest to me (wife, parents) never really offered (at least that I can recall, I think my wife went in the early days a few times but my memory is totally shot at this point). Ever the pragmatist I just kept quiet about it — plus there’s no way for that request to not sound guilt-trippy. But it always bummed me out, so after five years it was a nice change for a day at least.

Ariana has been hanging on me lately, mostly because I think she saw the devastation of  my wife and I at the clinical trial failing. She’s been very protective of me lately as well. It breaks my heart but gladdens it at the same time, if that makes sense. Never in my life have I EVER loved something so much it truly hurt until she came into my life AND I realized what she was.  Took me a while but I finally got it. And now fate seems hell-bent on taking me away from her.

One of her favorite words to misuse is the word “fair.”  If we tell her she can’t have desert because she’s not in the “clean plate club” tonight (hasn’t finished her dinner), she exclaims loudly that it isn’t fair. Usually with faked (and sometimes real) tears and a tantrum for really rough nights when she’s already hit the wall 30 minutes ago and now we’re coasting on fumes just to get through dinner.

But this … this isn’t fucking fair.  And I know it’s ridiculous in some ways to say that. I know that others have it worse.  Blah blah blahbitty blah blah. It isn’t fucking fair, and piss off if you want to ridicule the statement. I don’t care about the other 7 billion right now, just my daughter and I. And if there were a crueler thing than to spend every day wondering if this is the day you break her heart, if this is the day she starts saying “I miss daddy,” if today’s the day I just become a memory of a father, etc., then I don’t know what it is.

I’m just feeding it now, circling the drain at my office desk and I need to stop and get some work done before I totally break down. Anyhow, I’ll post up as soon as I get some results, if not sooner.  Keep an eye on the Twitter feed for random thoughts in the meantime if you care to.

Cancerversaries and other oddities.

Home but can’t sleep again. Been in the hospital all week after not being able to stay awake, ironically. A Xanax and a Temazapam or some other chemical foolishness and here I am, downstairs on the keyboard.

This night, ideally, is one made for a joint burning low, feet buried in the sand of a midnight beach somewhere as the roach burns down and you feel the drug begin to pull at your soul and start the magic, listening to invisible waves crashing and the whisper of the water pulling back into the unknown.

Funny thing is I always wrote better hopped up on this chemical pharmaceutical garbage than the organic stuff. Listening to the 60’s on 6 channel and wishing I was in another time and place, that I could trade all this for a little shackish sort of thing on a beach somewhere 50 or 60 years ago with a surfboard, a little radio you had to smack a few times to get some real music instead of this modern fucking garbage, the musical pollution we suffer today.  Some good weed and all of these crosses on my back gone and just … waves, man.  Waves forever. Serenity, something I can’t fathom anymore. This battle’s been too hard, the meaning’s lost.

Can you see it, even if just for a second?  Smell the cloying scent of the grass, the taste lingering on your tongue as some Manfred Mann plays in the background, the smell of someone cooking down the boardwalk? Are you there with me, silently, the briny smell off the sand wafting by? No more cancer. No more anything. Just peace.

If wishes were fishes, I think the saying goes?

As of last week I’ve been fighting this battle for five years.  Five fucking years, man (that sounds cooler, btw, if you do it in Jeremy Pivin’s voice from Grosse Point Blank). I’m scarred, a shadow of my former self in so many ways besides simply the physical … 185 pounds or something ridiculous this week at PSL. What did I weight a few years ago, an obese-ish 250? There goes that problem at least, sucked into 2017 along with 5 or so shattered vertebrae, 6″ of my colon and who remembers what else.

The clinical trial, my CAR-T salvation, was a failure.  Did I post that here?  I think I’m still in shock about that. My numbers went up.  All that “fun” and money and time for nothing. I even had a woman visit while out there who had just gone through it, same flavor of Myeloma as me, 100% gone. Me?  Numbers go up. I don’t know if it was my cancer, or they fucked the t-cells up, or having floaters and travel nurses watching me and screwing up, who knows. Not much point in trying to find blame. It’s over, it failed. Just like the rest of the treatments.

Oh man. Four Tops doing “I Can’t Help Myself.” Swoon. Just something about good music in the darkness.

I have to get up at some ungodly hour tomorrow morning to meet my oncologist to sign off on the next treatment.  Carfilzomib, here we come. Guess this better work since I think we’ve been through about everything else except another transplant.

Blech, Beatles and I’m outta skips for an hour.  Damnit.

I was talking to a psychiatrist this morning, real strong German accent. Gorgeous. Amy asked if she blew me, and it being the third time I’d fielded that question today from her about someone female I just gave up and said sure hon, if it makes you feel better. If wishes were fishes indeed. Anyways, we talked, I cried as usual. She had some cool things to say and was willing to work with Amy and I, and Ariana as well. She apparently  has a background in pediatrics as well. She talked to me about finding the MEANING in this battle, in this consummation of who I was, really. I’ll have to ponder that.

Wish I could ponder it with a joint burning. Reference above.

And to Liz, thanks for the care and the spirit. It may be a day job but I enjoyed our talks and from a scary hospital bed a friend, much less one who’s seen as much as I think you have, is rare indeed. My humble thanks.

I feel like this is oversharing tonight, too much honestly. I just padded down here and the page beckoned.  It does that sometimes, pulls me in, sucks me in, makes me visualize Ariana reading this stuff someday printed in some archaic PDF I’ve left instructions to be made. Wonder if she’ll be able to reach across the years and see me here tonight in the darkness while she slept obliviously above me, know how hard, how fucking hard, her daddy fought for another day with her. See herself on that beach with me, maybe, not a care in the world, just a dad and daughter burning one to the sunset Gods and the never-ending waves in the darkness.

Jesus … and we end with the Sound of Silence, one of my all-time favs. Don’t tell me that’s not motherfucking kismet, man. My writing career, my life in a way. Words that resonate, each one, haunting, beautiful.

Hello darkness, my old friend
I’ve come to talk with you again
Because a vision softly creeping
Left its seeds while I was sleeping
And the vision that was planted in my brain
Still remains
Within the sound of silence
In restless dreams I walked alone
Narrow streets of cobblestone
‘Neath the halo of a street lamp
I turned my collar to the cold and damp
When my eyes were stabbed by the flash of a neon light
That split the night
And touched the sound of silence
And in the naked light I saw
Ten thousand people, maybe more
People talking without speaking
People hearing without listening
People writing songs that voices never share
And no one dared
Disturb the sound of silence
Fools, said I, you do not know
Silence like a cancer grows
Hear my words that I might teach you
Take my arms that I might reach you
But my words, like silent raindrops fell
And echoed in the wells of silence
And the people bowed and prayed
To the neon god they made
And the sign flashed out its warning
In the words that it was forming
And the sign said, the words of the prophets are written on the subway walls
And tenement halls
And whispered in the sounds of silence

 

Goodnight.

The Summer of 2017.

When I was a child I had a little stuffed bear.  I couldn’t tell you what he originally looked like even though I still have him — almost 47 years of wear and tear from myself and of course now my daughter, on top of being mauled by various dogs through the years, have taken their toll.  In fact he’s more triage than bear at this point.  A sad faded yellow with a white belly, a hard surface where presumably at some point the nose was attached, and covered with my father’s best attempts at sewing him back together after one of the labs would get a hold of him.  Stuffing leaks from unfixed holes in his belly sometimes and both ears could use some reconstruction work.

I’ve thought a lot about that bear recently. This just hasn’t been my year, especially physically — three surgeries have left me looking like him in my mind (with a slightly worse tan); scars across my stomach, translucent skin, no eyebrows or hair, etc.  As I write this, in fact, today marks just over a week since I was last in the ICU at the hospital and the longest I’ve been out of PSL in the last three months.

I realized something (well a lot of somethings, but one big one) during all of that time.

I have cancer.

I hope that makes sense in a non-patronizing way — obviously I know I’ve had cancer for over 4 1/2 years now. But up until this year it felt manageable, almost surreal … something you can picture, form words around, but not really understand.  As Dr. Mikhael at the Mayo Clinic pointed out to me years ago I wouldn’t even know I had a terminal disease except people kept telling me I did (and making me take drugs for it).

But this year?  This year I’ve watched, helplessly, as my health has deteriorated to the point where on a few of these visits I (and others) were convinced I wasn’t going to be leaving the hospital again.  Worst of all, at least to me, was having so much time to really think about that.  At the risk of making too broad an assumption I think most people would prefer to die suddenly, painlessly, their affairs in order.  But there’s a special Hell in just waiting and kinda wishing to die that defies me to really explain it satisfactorily, in crying yourself to sleep in an uncomfortable hospital bed thinking it wouldn’t be so bad if you just didn’t wake up tomorrow.  Even though the consequences on those around you that you care the most about would be so brutal — that tipping point, emotionally, where you just stop caring and the pain of it all trumps the logical, the kind, the caring.  Where you just don’t want to feel anymore, anything.

It’s that inflection point that really scares me about death when I think about it — when I can say to myself that I’m sorry, Ariana, but daddy just couldn’t take it any more.

I haven’t updated for a while, I should probably tell this tale.

VTD-PACE round four fucked me up pretty good.  It did its work, in terms of my numbers (which typically I don’t have handy as I type this), but the price was too high — I’ve been a medical dumpster fire since the end of the treatment and the khyphoplasty for my back fracture.

Things started like the post-PACE hospitalization week always did each cycle, with this overwhelming mental, physical and emotional sense that something was seriously wrong. Each cycle that’s gotten worse but round 4’s was impressive — I was a basket case for a few days. I can’t even put to words, were I even willing to share the thoughts and imagery, of what was going through my head. I would hazard a guess that the massive amounts of steroids in this treatment causes this reaction, but regardless it’s the death of all hope, this black pit that you can’t get yourself out of except by waiting it out.

Then the cold hit.  Having just been hospitalized for pneumonia I wasn’t too worried as I felt decent-ish and had just had an IViG infusion, but then the sputum I was coughing up started being mostly blood (sorry for the gross image) and other symptoms started appearing (body pains, shortness of and difficulty catching my breath, etc.).  Back to the ER and into the hospital again.  Turns out not only did I still have (or had developed a new) pneumonia, but I had mold in my lungs.  Aspergillis, if you were curious, although I prefer to call it “Bob.”  Aspergillis sounds like somewhere you have dinner in the Hamptons after beating the slaves or whatever people who live in the Hamptons do for fun.

And that, btw, is the end of the MMJ treatments for now.  Which figures — I take something like 17 medications and the only one that truly helped is now lost to me.  Yeah that warning about how immune-compromised people should probably avoid certain things?  Not bullshit apparently.

The mold thing led to a deeper problem — one of the main concerns with PACE is the damage it can do to your kidneys and other organs.  Same as Myeloma, really.  For the kidneys your doctors in the hospital look at the “creatin” number every day from the midnight blood tests (that’s when they do them at PSL anyways) as a proxy for that damage being done. On top of being already irritated, some of the tests (CT scan with IV contrast) can damage the kidneys as well, and sure enough in trying to nail down what the mold was and what it was doing my creatin shot through the roof.  All of a sudden I’m meeting kidney specialists who are assuring me we “probably” wouldn’t have to do dialysis and any damage “probably” wouldn’t be permanent while debating if it’s even safe for me to have a Tylenol.

How do you fix things before it gets permanent?  Tons of fluids.  Unfortunately when you have liquid in your lungs already from pneumonia the last thing you want to do is flood your lungs.  That diuretic treatment I’ve talked about before that makes you pee a lot, Lasix? Bad for the kidneys too.

Were that all I’m sure things would have gone smoother, but then out of nowhere I start experiencing excruciating pain in my chest that popped up one random day in the hospital and got so bad I needed painkillers to breathe.

One thing to note here, btw — if you are ever in the hospital and even remotely suggest to a nurse that you have chest pain, prepare for a lot of tests, a lot of monitoring and to meet all kinds of new and seemingly unamused doctors.  Immediately.  In my case it was diagnosed as periocarditis, an irritation of the sac surrounding the heart.  The CBCI doc rounding when this was discovered thought it was probably brought on by the chemotherapy, but either way they began treating it (I forget with what — was in there for two weeks and lost track of time) and within a day or so I was feeling better.

To deal with the mold, the infectious disease doctors (more specialists) wanted a certain level of anti-fungal medication in my system.  For some reason these drugs in pill form are super expensive so before I was discharged we had to make sure not only that my creatin (read: kidney irritation) levels were plateaued or dropping, but that I had the anti-fungals doing the work AND the pharmacies had more anti-fungals for me AND the other drugs I was taking wouldn’t interfere.  Apparently you’re on these for quite a while too.  So I get prescriptions called in and get discharged after two weeks at PSL.

Keep in mind the whole time I’m missing my daughter and freaked out about what she’s thinking — that’s a long time to be away from a 5-year-old, much less in a hospital she can’t even visit (14-year-old age restriction).  We FaceTimed every night, of course, but even sitting up and taking my oxygen out for a bit must still have been scary.  I’m still missing all of my hair, including my eyebrows, so me sitting up in a hospital bed in a hospital gown isn’t exactly the most comforting image.

On the bright side at least I knew, relatively, that I was safe.  So days pass, I felt a lot better, say 80-90%, and a’ discharging we go.

The next day we go to pick up my anti-fungals and … the insurance company refused to cover them.  For several thousand dollars of medicine too, otherwise I would have just eaten the cost.  Not thrilled since this was supposed to have been taken care of before I was even discharged, I let the doctors know and we planned to deal with it at a follow-up appointment a few days later.

I’m trying to get the timeline in my head right at this point but basically I got discharged on Friday the 29th of September here with a Monday follow-up appointment at CBCI. That weekend I felt fine until Sunday, when I started feeling exhausted and ended up going to bed when we put our daughter to bed around 7 pm.  Had the worst nightmares of my life that night as my health deteriorated throughout the night. Thankfully my father was able to give me a ride to CBCI but my wife had me take my in-hospital bag and laptop, because sure enough they re-admitted me that day.  Some of the CBCI personnel I know noted at later visits how bad I looked that day.

I actually thought that was kind of it again, really. I think we in general have this perception, perhaps due to the gravity of it all, that you know when the end’s come. In reality what I’ve learned and come to expect is just a slide into oblivion — the system overloads, the failures mount up and at some point it’s just too much.  Needless to say I was not in a good head-space at this point.

Spent another week in the hospital, more tests, and go home — pneumonia again plus more of the periocarditis-related issues.  A night later and I can’t breathe deeply without severe, stabbing pain and even with home oxygen canisters I had to take a few minutes after climbing stairs to catch my breath.  Freaked out but having oxygen and an appointment at CBCI that coming week I tried to grit through it but I was terrified — not being able to breathe is pretty awful, as are the thoughts that go through your head.  Is this my life now?  What do I do if one of these O2 cans fails, just die?

I emailed the oncology team the night before my appointment and told them what was going on and was admitted to the ICU the next day.  Queue tons more tests including a bunch of echoes which showed that on top of some liquid in my lungs I now had a large amount of liquid in the pericardium sac around my heart, a condition called pericardial infusion. Since there’s a limited amount of space there the heart can’t function normally which was apparently causing the pain and the inability to breathe properly, as well as my randomly going into atrial fibrillation (I think that’s how you say it).  So from 50-70 beats per minute my heart rate would suddenly jump up into the 150’s.

Oddly I didn’t notice when this would happen except that all fucking hell would break loose on the monitors attached to me and a nurse would come running.  It would self correct in about 5-10 minutes, usually before they could even get an EKG set up.

After consulting with CBCI and the specialists at PSL I ended up having surgery to fix the problem, which had ballooned into a full pericardial effusion, where the heart has so much fluid pressuring it that it can’t work correctly, and just short of a tamponade, when it stops being able to work).  The surgery was performed by this awesome guy named Dr. Parker with a ton of experience doing them and they took roughly a quart of fluid from the pericardium.  I now have a new 5″ scar between my belly button and my chest plus a hole where a grenade-shaped drain attached to the surgical site was attached for several days.  I’m on a few different antibiotics, antifungals and antivirals based on what they found when they analyzed the crap they drained out of me, but I’m alive.

Physically.

Mentally and emotionally I’m really struggling.  I relatively waltzed into 2017 by comparison, or as waltzy as you can get always knowing in the back of your head that you have a terminal disease. But after having 6″ of my colon removed, pneumonia twice, four rounds of salvage chemotherapy, mold in my lungs and now a quart of fluid drained from around my heart I just feel pistol-whipped.  I’ve lost a good 60+ pounds and look almost gaunt, a first for me, and not a good look combined with the lack of hair and eyebrows.  I get the chills out of nowhere, presumably from the weight loss, and energy drops I can’t explain.  I definitely do not feel right.

I guess I just feel like I’m cancer now, like this is some big waiting game.  Just when I’ve thought I had a grasp on my reality I’m shown this new level of horror and forced to face it and it keeps happening.  I’m tired.  God two days after I got out of the hospital the last time I had this awful Sunday where I could not stop either sweating or getting the chills and my skin was tingling and I was thanking whatever deity I could think of that I did not have a pistol in the house.  You just hit a limit.  But for some reason I just keep taking it, taking the pain, the heartbreak, the apologies to my daughter for not being able to be a more active or fun daddy sometimes.

Her hugs are about the only thing that helps, even though they break my heart.

I’m quieter now.  I’ve already experienced people not recognizing me physically thanks to this year but it feels different when I talk to people.  Awkward, a little.  I mean it’s always a lil’ awkward when you have cancer to talk to friends, we all know that, but this is different.  Like I’m an observer, almost, a third-party participant that doesn’t quite fit in.  Hard to explain.

On the bright side, if you can believe there is one, we got a puppy.  I really didn’t want a dog and my wife and daughter are allergic, but they found some hypo-allergenic cute five-month-old silky / Havanese mix. Not even sure I was leaving the hospital ever again I said yes, even though I prefer cats, but it’s worked out.  Beatrix is a bundle of love and a joy to just pet, and I think it’s what our family needed right now.  Besides pets pick owners, not the other way around.

And it’s not like I wasn’t already washing my hands like I had OCD with a kindergartner in the house anyways, right?

Lastly RIP to @CultPerfectMoms, someone I’ve followed on Twitter for quite a while now.  Her last blog post can be found here but she only lasted a few more weeks.  In a small way her struggle, and final acceptance, helped me when I was in the hospital to keep just taking a step forward even not knowing (or wanting to know) what was coming tomorrow to see my daughter again.  Thoughts and prayers to her family.