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.

 

Fractured Thoughts.

Last Sunday night we came home from dinner to put Ariana to bed and let Amy study a bit. Remember that cold I picked up right before getting my monthly IViG infusion (which is supposed to bolster the immune system)? I had contacted my oncologist as the week progressed and it got worse to get some antibiotics just in case — Amy, who had the same cold, had been prescribed some so it made sense for me to do so as well.

“Just in case” happened Sunday night. As the night progressed I started not being able to slow my breathing down (which is a pretty terrifying feeling if you haven’t experienced it). Weighing all of our options we had a neighbor come over to be in the house while Ariana slept while my wife took me to the ER at PSL.  Sure enough, pneumonia.  It took about six hours to get my breathing back under control during which time I’m not afraid to admit I was terrified — I may not mind the concept of death but that is most decidedly NOT how I want to go out.

Interestingly they used Lasix to get my breathing under control — the drug that makes you pee like crazy?  Apparently it also gets liquid out of your lungs.

So anyhow, during the last cycle of PACE my doctors had done an MRI to see what was going on with the back pain I’ve had for a month. By that Sunday night dinner the pain had worsened to the point where I was using a cane just to move around and popping every painkiller I had. Over the course of a few days in the hospital while getting all antibiotic-y and trying to find a painkiller that actually did anything for my back, the docs decided to do some X-rays and it turns out that what the MRI somehow missed (or just wasn’t there yet) when it was done on July 19th) was a compression fracture of my L2 vertebrae.

My life is never simple.

So, net-net is I’m sitting here watching the sun come up but instead of being discharged today I’ll be having a procedure done called kyphoplasty. I’m trying not to be nervous but, um, SPINE SURGERY. I know it’s minimally invasive and problem incidence rates are super low but yeah, SPINE SURGERY. Not something I ever wanted to explore, but hey, Myeloma’s the gift that keeps on giving, right?

So are compression fractures from what I’ve read, incidentally. There’s now an above-average chance of getting another one.  Sighville.

That’s about all I’ve got right now.  I didn’t even find out they were able to schedule it until late last night when one of the nurses told me I was on liquid restrictions after midnight — still no clue when exactly I’m having this done today but I should learn more at the shift change in an hour.  Will post updates when I can.

Jesus, ouch dude.

In a feat of typical Rich timing I managed to pick up a cold right before my IViG infusion yesterday when my immune system was at its most compromised.  On the plus side the cold seems to be moving pretty fast.  The negative?  every time I cough it feels like someone is stabbing me in the lower back.  Was up almost every hour on the hour last night coughing and then muffling a scream into my pillows.  Really wish I had some idea of what in the Hell is going on with my lower back because I have never felt pain like this before.

Oh and it was a damp evening thanks to the night sweats, which I detest. Pretty sure that’s coming from the Velcade portion of the PACE chemotherapy regimen — I used to get that all the time during year one when I was doing weekly Velcade shots.

So yeah, pretty miserable night, but I made it to work. Stoned off my ass on Oxycodone and DayQuil, but here nonetheless.

I met with my oncologist yesterday as well and, thanks to my numbers continuing to improve on this VTD-PACE regimen, we’re doing round four.  I also signed the paperwork at that meeting for my collected stem cells to be delivered here from Arizona as that is still the plan (a stem cell transplant) following this fourth cycle of PACE. I’m still concerned about the six week break between the end of round four and the start of the stem cell transplant, but sounds like there’s nothing to be done about it — Dr. Matous wants me as recovered as possible before I walk into the transplant.

Here’s to hoping that my numbers don’t go nuts like they did at the start of the year when I had to take a few months off chemo for that stomach surgery.

 

PACE round four TBD

At the oncologist today for a Velcade shot and office visit to check blood counts.  Nothing’s needed yet but I have to come back in a few days since my absolute neutra-something count and my platelets are trending down.

According to Megan the NP, the Myeloma labs drawn today will dictate whether I do a fourth round of the VTD-PACE chemotherapy — should have the numbers by the end of the week.

Mixed on what I hope for.  After making a side joke about how I wish someone would tell my wife how hard these treatments are, Megan said each round of PACE is like doing induction chemotherapy for Leukemia.  That means nothing to me but apparently it’s a way to explain things to folks in the know?

Quick PACE Round 3 Wrap-Up.

I’ve been in recovery mode for the past week after being released from the hospital last Sunday.  Although I feel like I’m on the upswing now I’m still guarded, unsure entirely who’s talking when I speak.

I’m going to keep this entry more “just the facts, ma’am,” a trend I think I’ll be adopting a bit more here. Until I get the psych meds sorted and am not taking such massive doses of steroids I have a hard time trusting my thought process and the emotional wall springs massive leaks, which lately are driving me cringing from the thought of writing.  It just gets too damned dark.

Fun fucking disease.

So, some random facts:

  • Round three was like the others, only more so. That’s something that perhaps you just have to experience chemotherapy to get.
  • The MRI on my back showed nothing.  It still hurts, although it’s not as bad.  I can’t bend without pain unless I’m on a pain medication, which I will not take regularly.  Tried Fentanyl and OxyCodone and only the Oxy made a dent.
  • Had a ton of folks visit which was awesome.
  • Talked to my doctor who confirmed that if I handle it well (so far I have) that we could do a fourth round of this prior to another line of treatment.
  • Walked into the hospital with C. diff.  The antibiotic for that bit of fun is one of the worst tasting liquids I’ve ever had.  Four times a day.

That’s really about it. I felt like I was on death’s door after getting out of the hospital and I still have little to no energy, but the physical discomfort has at least mostly passed (except for the back pain).  Emotionally I’m a wreck, but then what’s new with that lately? I was hoping to try the swap to the new brain drug this coming week so as not to complicate things with the hospital, so we’ll see how that goes starting tomorrow.

Many worlds I’ve come since I first left home.

Tomorrow I go back into the hospital for a week for the third, and most likely final, round of VTD-PACE. I’m not worried about the hospital stay, although that’s a pain in the ass, but more what comes after.

This weekend, my wife and daughter went up to Breckenridge with my wife’s parents.  I stayed at home, not really in any shape for outside activities or prolonged sun exposure. I spent most of that time thinking about things, which rarely is a puppydog and rainbows activity for me. And missing my daughter.

I dunno, folks.  Although I hadn’t even really recognized it, last week was my four-year anniversary of this nightmare.  I wish I had something to celebrate besides simply surviving, a verb that still seems so alien all these years later.  It seems to be the key word, though, especially this year and with these treatments.  Yeah, I’m still around … but in pretty rough shape.  I find it difficult, in fact impossible right now except in an abstract way, to even see the light as it were.  No matter how I slice it I’m staring down the barrel at several more hospital stays, doctors visits, tests … the list never seems to end. We’re off the rails now and in the “here be monsters” part of the map where the decisions are not written in stone like they used to be, and the choices make the earlier therapies seem like fun by comparison.

Another round of this?  Unlikely, but possible.  Dr. Matous never does four of these and rarely three, but this chemotherapy is all that has really made a dent in the last year so three it is.  A stem cell transplant next?  I’m at a zero level of excitement for that, but if it’s what the doctor wants I’ll certainly pay attention — I didn’t spend all the time and money to get top of the line healthcare to just ignore it.  CAR-T?  After the SCT, but apparently that’s got some serious hospital time as well.

If I think too long about it all I’m overcome with … well, I dunno.  It’s not depression, although there’s certainly some of that mixed into this.  What’s the word for an overwhelming sense of “fuck me running?”  Not sure.  I’ve felt for a while now like things have taken a turn this year, not necessarily in a good direction, and this is more of the same.  I think I’m in that stage a lot of patients seem to get to at some point where the treatments are so intensive both physically and time-wise that I’m rebelling, at least internally, at the toll it’s taking. I’m exhausted all of the time now and I have lower back pain so severe that even a double-dose of Oxycodone combined with some of Colorado’s finest isn’t getting rid of it, making getting up from a chair or couch an adventure in pain.

I have an MRI scheduled for my back tomorrow, and on the bright side, hey, I’ll get the good drugs to deal with the pain.  Generally when you answer the “what’s your pain at” with tears and a minor scream when you get out of the hospital bed they give you the good stuff.  So helloooooooo Fentanyl, it’s been too long.

I can’t seem to get back to a more carefree, happier headspace lately. I blame the steroids first and foremost, but it’s not as bad as it was before — perhaps because I know what to look for now?  I just bite my lip and boggle at the things my brain comes up with (bitter retorts, nasty replies, constant critical comments, etc.) and only let the good stuff come out of my mouth. But I can’t fake happy like I can fake politeness, and my emotional wall seems dangerously porous again. How do you really explain why you suddenly start crying out of nowhere when your thoughts stray to cancer and your child?  When you have to grit your teeth and clutch the armrests of your chair so tight you snap one in half to get your head back out of that particular hole?  How when most people daydream about summery stuff you’re idly pondering your own funeral?  It’s definitely a weird mental space to inhabit.

How do I understand and come to terms with the person I’ve become when the thoughts I have, as horrible as they are, come naturally?  I mentally go through a checklist of what to bring and do for this next week-long stint and without skipping a beat note to write a goodbye letter to my daughter.  A goodbye letter.  To my daughter.

Jesus.

You try it.  Maybe it’s just me but I don’t know how to deal with things like that without opening the floodgates.  Which is a good look on top of the bald head and hairless face, let me tell ‘ya.

But yeah, as my health has been much more precarious this year I’ve realized if I were taken suddenly there’s nothing but scattered writings and pieces — I need to know there’s more, a direct connection.  So I have some writing to do.

That should be fun.

Decided I want the Dead’s “Brokedown Palace” played at my funeral, although not in an obnoxious “OK everyone listen to this song” way. Just on loop until the festivities, as it were, start.  Probably quote this in the aforementioned letter as well.  Something powerful about this song that has always made it stick in my mind:

Fare you well, my honey
Fare you well, my only true one
All the birds that were singing
Are flown, except you alone

Gonna leave this brokedown palace
On my hands and my knees, I will roll, roll, roll
Make myself a bed by the waterside
In my time, in my time, I will roll, roll, roll

In a bed, in a bed
By the waterside I will lay my head
Listen to the river sing sweet songs
To rock my soul

River gonna take me, sing me sweet and sleepy
Sing me sweet and sleepy all the way back home
It’s a far gone lullaby sung many years ago
Mama, Mama, many worlds I’ve come since I first left home

Going home, going home
By the waterside I will rest my bones
Listen to the river sing sweet songs
To rock my soul

Going to plant a weeping willow
On the bank’s green edge it will grow, grow, grow
Singing a lullaby beside the water
Lovers come and go, the river will roll, roll, roll

Fare you well, fare you well
I love you more than words can tell
Listen to the river sing sweet songs
To rock my soul.

Yes I listen to the Dead AND metal that makes even metalheads cringe at its heaviness.  The 4,000+ songs on my phone are an exercise in schizophrenic music habits.

Anyhow I’m just scrapping the barnacles off the soul here and preparing myself for the hospital stay, so sorry for the negative spiral.  Sadly I actually had something I was going to end with here that was positive, but of course chemobrain ate it before I could get fingers to keys.  Sigh.  Well one bright note, the GOP has failed to destroy our broken but somewhat functional healthcare system, so at least my Twitter feed will go back to cancer-related stuff instead of the incessant political Tweets.

Little victories.

See you in the hospital.  I’ll be the one eating a Chicago dog with a mustard stain on my hospital gown.

 

Reflecting on a past life.

A week out from round three of VTD-PACE and I’m trying to get my head around things.

Went in for a blood test Tuesday morning as I’ve been exhausted since Friday and sleeping like the dead (normally I’m a very light sleeper). On Friday, for example, I came home early from work since I couldn’t keep my eyes open and zonked out on a couch. I woke up around 5 pm and asked my wife why the cleaning girls didn’t come only to find out not only did they but they cleaned around me and I didn’t wake up.

Unfortunately, or fortunately depending on how you view these things, my numbers didn’t qualify for a transfusion. While I was happy to not have to sit in the hospital getting blood all afternoon I am somewhat concerned about how tired I’ve been if it’s not being caused by low blood counts — I’m guessing it’s either the cancer itself or, more likely, the toll all of these chemotherapy drugs are taking on my body?  Who knows at this point.

I’ve also been dealing with an almost debilitating level of lower back pain that I cannot point to a cause for and say “aha!” Been treating that in more natural ways but a few nights I’ve broken down and dipped into the opioid well.

I know the number one lesson from sports is never look past your next opponent, but — actually, that’s wrong.  That’s the number two rule; the number one rule of sports is never treat a groin pull with Icy Hot. But anyways I know it’s a mistake but I’ve been spending a lot of time looking past this third cycle and at that stem cell transplant looming on the horizon.  I’m just not a big fan of the concept right now — the first one I did was a major pain in the ass and wasn’t that effective, so I’m not sure what a second one is supposed to accomplish.  We’ll see.  I’m not in the habit of getting the best healthcare I can find and then questioning it but this is a pretty major decision to just sign off on without some serious thought attached.

Things have been odd lately around me.  I feel like everything is a bit off, from flavors all the way to my initial reactions to events. As a result I’ve been more tight-lipped than usual because I don’t know where my reactions are coming from — the drugs? Depression? My brain is awash in chemicals and unfamiliar responses and I can’t tell any more.  One thought pervades through it all, however, and that is how much I am missing diving. Part of that is the purely hedonistic angle — life just isn’t nearly as fun for me without diving, and after four years I am Jonesing so badly it’s not funny.  I miss the serenity, the comradery, the feeling of being someone special when I was assisting classes or dive guiding at the aquarium here, the exotic locales, the water.

The WATER. Why I ever allowed myself to live in a land-locked state is beyond me.

One of my old favorite things to do was burn a few days vacation time and assist classes at a local reservoir during the week with a favorite instructor friend.  Not only did we work well together but after the students left we’d bust out the mini grill and cook up some burgers or brats and relax, go for a fun dive, etc.  Missing that bigtime.

906424_10151391785258097_1428980244_o

That’s me exploring outside a wreck in Cozumel, picture by a close friend.

Along with those yearnings has come a strong undercurrent of resentment about my disease. Granted that’s always been there to some degree, but lately it’s been more prevalent in my thoughts.  I would guess this is coming from all of the introspection this PACE therapy has forced upon me — I’m always feeling poorly these days and there’s no time to even recover before the next round and another week in the hospital, another slew of follow-up appointments, more transfusions, etc.  Combine that with the lack of hair and how I look lately and I feel like I’m not even Rich anymore, I’m just Myeloma.  As a result I’m resisting, mentally and emotionally, rebelling without a real target.

I miss my old life, who I used to be. I feel like I could be a better person now if I were allowed to return to it free of these diseased shackles but with the full knowledge of where I’ve been and how precarious things can be.

But that’s neither here nor there at the moment.  I have an appointment with the oncologists tomorrow morning and on the 19th we start the third and final round of VTD-PACE, followed by six weeks of recovery and then a stem cell transplant.  Time to focus on what’s right in front of me and just try to keep the dreams of the past life alive until I can get there again.