“Good Morn– ” *SLAM*

Some days you just KNOW what’s coming.

So all of those chemotherapies they gave me as a cocktail from Hell last week? Pretty sure the side effects are kicking in today.  They certainly are kicking the crap out of my blood counts:

  • White blood cell count: 0.9 (4.50-11.00 10^9/L)
  • Red blood cell count: 2.34 (4.4-6.0 10^12/L)
  • Hemoglobin: 7.2 (14.2-18.0 g/dL)
  • Hematocrit: 21.3 (40.0-54%)
  • Platelets: 27 (150-400 10^9/L)

For those who aren’t hematologists, nurses or just one of us dying from a blood cancer, it’s the hemoglobin that, at least for me, has been so low as to necessitate a blood transfusion.  Seven is the threshold but there’s wiggle room, such as when you were at nine-something two days ago.  I knew something was up this morning when I woke up exhausted after a decent nights sleep. That’s always such a bummer … bad enough to have to wake up in the first place when you don’t want to get out of bed, but on top of it immediately experiencing the low blood count version of this:

giphy

That kills me every time.

So to back up a bit, I had an appointment today for labs and more Velcade.  My assigned nurse in the infusion center said that I didn’t actually need labs since there were some done two days ago.  I didn’t think that was correct, given expected blood count drops from the VTD-PACE, but I specifically wanted to see my hemoglobin in case I was right in thinking my exhaustion was being caused by low counts so I requested the test anyways.  Sure enough I needed blood, and there’s a lesson in there about being proactive with this stuff.  After four years I’ve become fairly well attuned to what my personal meat popsickle is going through.

Always be your own advocate!

Unfortunately it’s kind of a Pyrrhic victory. As in “great, you were right!  Now you’ll be here the rest of the day.”

Oh well.

While in the infusion room at CBCI I noticed a FELLOW patient of my doctor that I had spoken to briefly once before.  I jotted down the blog address and gave it to him, a returned favor for a business card he had given me the previous encounter.

So for obvious reasons — well, at least obvious if you read the previous blog post — I’ve been thinking about the loneliness of cancer a bit lately.  It just seems like Myeloma itself is forcing an isolation on me … which probably is about as clear as mud.   Hmm … OK, see if this makes more sense: so there’s a 1 in about 143 chance, or 0.7%, that you’ll, err, catch?  Do you catch cancer? Well whatever. So it’s 0.7% you’ll come down with a terminal case of ze Myelomas.

But then what if you’re not even in the target demographic? I know this disease is striking at younger and younger folks but when I’ve been to three different top level Myeloma centers I’m the youngest in the waiting room by a good 20 years.  Minimum. I still would have yet to actually meet (and become great friends with) another person with Myeloma had it not been for a mutual friend.

Of that population, according to a slide I saw from ASCO earlier, only about 33% are online with some form of social media. So yeah, there’s only a handful of us that are easy to find.

Being singled out in society, even if quietly with a rare disease, is a weird feeling.  A VERY weird feeling.  Like last person on the planet feeling.  Not knowing anyone who can really 100% sympathize, no fucking clue how you got this … I mean humans are no different than the moles you hit in a whack-a-mole game — safety is with the group underneath. It’s written into our genetic code.  Danger is outside the herd, through the holes.

Nobody should have to fight alone.  Especially this fucker of a battle.  It’s just a bit too much to ask of someone — a lot too much, sometimes.

Anyways, hope if you get here, my friend, you know the door’s always open — email, Twitter, whatever.  Nobody has to go through this shit alone.  And I still have every intention of taking one of your classes!

Sat down with the wife last night. She says she’s still committed to our efforts and that, as I relayed Tuesday night’s fun and my thoughts this past week, we have “different recollections” of that night.  Time will tell.  This is another reason, however, why I truly feel some sort of social worker HAS to be involved with cancer patients. The side effects of these drugs can be overwhelming if you don’t know it’s coming.

What else … oh, the big ASCO meeting is going on in Chiraq this weekend. Oddly enough I didn’t know that (took about a week off social media this past week) until I talked to a cousin who is on his way there as part of the industry.  Someday I would like to go to something like that — although I have a feeling the Adult Entertainment Expo or the local Cannabis Cup has vastly cooler giveaways, at least if you are travel planning based on cancer-related life expectancy.  Plus you can get herpes easily at the AEE (there’s probably a booth that gives it away), although I’m not going to rule that out at the other two.

Either way I’ll re-Tweet (God, I swore I’d never say that phrase out-loud, sigh) anything interesting that us plebes can understand on Myeloma.

Hmmm.  You know that’d be a neat business to own, come to think of it … a travel agency for the Doomed.  Could call it “Fuck It Travel.” High-dollar vacations for people who decided their kids were too shitty to leave anything to and want to blow the savings on one last hurrah.  I like it.

And on that note, I’m done. And as usual, I apologize for what I’m doing to this unit of new blood tonight.

And here … we … go.

giphy

VTD-PACE, first day of treatment.

Got to the hospital around 8:15ish in the morning. Pretty sedate day, really.  Port accessed, blood tests taken and then a lot of downtime before the pre-meds and the cocktail of Doom was ready.  I spent most of it sleeping … I’m on a new sleep aide that I started Saturday that is also supposed to help with the Dex side effects and I think it’s working a bit too well.  Thankfully I was able to just relax and get some rest today. My blood counts, for once in the last few months, were not bad enough to merit a transfusion too so yay!

For those who missed it and don’t know, VTD-PACE is a salvage chemotherapy.  Our plan is 1 of these treatments per month for 2-3 months followed by a stem cell transplant (auto, meaning my own stem cells).  This year my Myeloma started to get ornery and the numbers are a bit out of control, so “salvage.”

I’m currently getting Velcade (shot in stomach), Dex, Cisplatin, Cyclophosphamide, Adriamycin and Etoposide. I was told most of the side effects are the typical ones (nausea, fatigue, hair loss) but that each drug had it’s own idiosyncrasies in terms of dangerous ones. One can damage the heart, one can inflame the bladder, etc..  On top of that there’s a risk that the chemotherapy destroys the cells (there’s a name for this) in your blood stream that can end up causing kidney damage.  Those side effects are why I’ll be getting monitored every 6 hours until I’m released on Friday. The lenalidomide (sp?) will begin hopefully later this week as soon as it arrives (hospitals apparently don’t stock the stuff and mine hasn’t been sent yet but the oncologists are on top of it).

Because of my past with it I’m mostly concerned about the Dex. 40mg a day for 4 days or something equally as absurd. Hoping the new sleep aide who’s name I keep blanking on (I cheated and looked it up, “Zyprexa”) will help — it’s an anti-psychotic that also helps with sleep. Since I’m pretty sure they frown on blazing up a joint in the hospital room you go with whatcha’ got I guess.

I do feel hopeful by the way.  Never assume just because I tend to come across as bitter here that it equates to “hopeless.” I am bitter a bit, but it’s rare that I’m not thinking of something funny. That goes back to some MASH episode I watched decades ago, btw.  There was one I’ve never found again where Hawkeye (Alan Alda) is explaining to someone that the reason he and his friends do all of the crazy stuff is that if they didn’t, in the middle of a triage camp in Korea, they’d go insane from the horror. I 100% get that. Looking at photos of people wearing silly costumes and stuff to chemo it’s obvious to me that most of us get it.

I mean it sucks, right?  So have fucking fun with it. Met some really amazing people on staff at CBCI and the hospitals over the years just by making them laugh. After I finish this entry I have to make a list of documentaries I’ve loved for nurse Rita, another awesome nurse at PSL that I’ve worked with before.

Not only am I hopeful but I’m in a “fill it to the top and let’s kick this fucking thing’s ass” mood right now.  Enough’s enough, and if I have to live through the next two weeks with all the fun side effects, etc., I not only better get some good results or I’m, well, I dunno.  We’ll try something else and rock that. Whatever, you know?  I think being pragmatic and active in seeking treatment’s the best you can do in this situation, and I’m doing it.

With lots of cool stuff I snuck in from Trader Joe’s and hid in the closet.

Shhhh.

Nothing too deep to get into today — I’m in a good, positive mood and I’d rather not risk giving that up quite yet by getting into things. I’ve had to do some hardcore “don’t think about this” work in the last few days which, except for my daughter crying and telling me she didn’t want me to go” repeatedly (which broke me down last night) I’ve been mostly able to do. I’d like to write about my visit to the scuba shop I used to work at this week but we’ll see.  Trying to avoid the known triggers right now for obvious reasons.

One thing I would like to mention, and I’ll be putting up some sort of Surgeon General’s warning page about this when I find the motivation (and some other blog fixes I have in mind). I write to exorcise things. I do it in a style that makes it read smoothly (well, most of the time) because I did things like this for a living and learned how — I think in column format now when I write. It works brilliantly most of the time but with a caveat — those who read it tend to only see the negative things I’m writing about and assume that’s me.

It’s only half at most, though, the Mr. Hyde half.

That being said, I firmly believe EVERY cancer patient has the thoughts I write about and similar reactions even if they keep them quiet. I made this blog public because I prefer straight talk and it was frustrating to me when I was first diagnosed to not be able to find that level of brutal honesty in most of the blogs I ran across. Which is fine, right? Look not only do I think it’s great if your faith or your indomitable positive spirit is what gets you through, but I envy you in a lot of ways if you’re that person. It’s just not how I operate, and as a result this blog is going to read as bitter, angry, crass … you name it. So if you need more positive emotions I won’t be offended, promise.  Hell hook me up and I’ll check them out!

But pssssstttt … if you too get frustrated with your personalized death sentence, rest assured that others have felt it, and I’ll be your voice if you don’t want to admit that to people. I understand that too. K? I bet there’s at least one person reading this who not only would never in a million years drop an f-bomb and cringes when I do. But staring at those ceiling titles one day trying to justify all of this in your mind, you dropped one. Even if it never crossed your lips. And that’s OK. Don’t say it out loud; I’ll say it for you and it’ll be our little secret. You deserve that F-bomb, my friend. Fuck cancer, and fuck chemotherapy, and fuck what it’s done to our lives, the experiences we’ve had to have, the fear of test results, the never-ending hypochondriac level of concern when something new happens, yada yada yada.

You aren’t alone. And as I’ve discovered four years into this, neither am I.  I’m amazed in just the last month how many really neat contacts I’ve made in various cancer communities and what I’ve learned. I’m happy to help you get started with that as well, if you ever need it — just message me.

As long as you promise to understand what this blog really is and that it’s not all of me, that is.  Hope that makes sense.

Will post updates when I can. Here’s a pic as promised … one interesting thing I hadn’t seen before is the amazing nurse Kellie put brown bags over two of the chemo drips. She told me that was because some of these chemos are light sensitive.  Trippy. She also recited from memory what each does and the side effects which impressed the hell out of me. You can see the bags over the IV bags here:

IMG_5920

And look, that’s almost a smile!  Well sorta, the really smiley pics were just fucking goofy and as you can see I have bed head, hah.

Also that GIANT bag on the right is a 24-hour infusion. That makes your urine red, apparently.  Things that it’s amazing to know about BEFORE it happens. So thanks again awesome nurse Kellie!

Also I am not photogenic. In 46 years I have come to accept this. Goofy ears, still a bit overweight (but getting better!) and the signature scowl do not a paparazzi’s wet dream make.

Have a fun week and I’ll be in touch.

 

Marsha Marsha Marsha!

Man I feel like I got hit by a truck this week.  No idea what in the hell is going on but it’s like side-effect-palooza around here.  In no particular order:

  • Heart/chest pain.  This is the scary one to me.  I can’t tell if I’m having heart pain or some seriously Satanic heartburn.  It’s right at the top of my chest underneath my breastbone, hurts like the Devil for 5-10 minutes, and sometimes I can banish it with drinking cold water (sometimes not).  When I was on Velcade back in the day I used to have to take Prilosec to combat some side effects so I started taking that again, but I’m not 100% it’s a GI thing.  Will talk to my doctor Friday, although I’m pretty sure that means it’s time to break out the EKG machine.  Which I don’t mind, but the nurses at CBCI hate the combination of my chest hair and the not-really-sticky-whatsoever EKG pads.  Not quite as much as I do when they RIP THEM OFF LIKE A CHRISTMAS PRESENT.  Actually they’re pretty good about that stuff, I just thought that was a funny image.
  • Body pain.  I’m thinking this is Xanax-related.  I had my sleep schedule pretty dialed in during the last few chemos but every time I start a new one, as some of you well know, it’s time to figure it all out again.  I haven’t been able to sleep like I used to with past chemotherapies on this Dara cocktail so I started popping a Xanax on really bad nights again (I think this new steroid is really messing with my sleep), but then I wake up and my ENTIRE body hurts.  It gets worse through the day.
  • Other random things — minor neuropathy in my calves, exhaustion, temperature.  I may just be coming down with something too.  I’ve noticed I’m so much more aware of my body after four years of chemotherapy and everything else that I can usually point to something and say “yeah, think I’m run down because I’m fighting something off and my system is just taxed” or the like.  Either way something is beating the hell out of my immune system as can be seen from the CBC results.  At this point I’m curious if they’ll do my infusion Friday, which opens up a whole new can of worms — I missed a bunch of the clinical trial doses of my last regimen due to having pneumonia FOUR TIMES during it and obviously that’s not a positive (and also why I’m now on monthly IViG).  I’d really rather stay on the chemo drugs and try to get this goddamn cancer beaten back a bit than be sick.

I went to bed a few hours earlier than normal last night and proceeded to wake up all night long, sweaty and confused as to what was waking me up.  Like 10+ times.  THAT is what the Xanax used to stop, but I refused to take any last night to give myself a break.  Thankfully I’m heading home in a few hours for the day to hang with the kiddo while my wife gets some stuff done, because the thought of sitting here for another seven hours seems like a Herculean task today.

An interesting thing about Xanax (besides the fact that some dumbasses actually use the stuff recreationally) is that you can build a tolerance.  I used to take 0.5’s but noticed they weren’t helping this time around so I asked for 1.0’s.  The 0.5 aren’t working for beans, and the 1.0’s give me a hangover worse than my worst next-day in college.  Except for that one tequila “why is this pebble embedded in my nose night” from undergrad in SoCal, but that’s another story.

As a cancer victim, you (well me, but others I’ve talked to about this agree), are constantly scanning and analyzing every new pain, twitch, bump, skin aberration, spasm, sleepless night, thought, etc.  Is it a new cancer?  A new side-effect?  My cancer doing something?  The drugs working hard (I know this is a myth but I’ll admit sometimes I hope this is the case still) or not working at all?  Am I sick again?  Etc. etc.  I get a lot of lower back pain and I’m always worried, due to having Myeloma and knowing folks who have had vertebrae implode due to the osteoporosis Myeloma can cause, that I’m always one “picking up something heavy” from having my back shatter.  Especially since the only PET scan I ever did showed my lower back as a highlighted spot (and my hip and a couple of other spots where there were bone lesions from this).

Anyhow nothing too philosophical today, just an update since this has consumed most of my thoughts lately.  And don’t get me wrong, I’m actually doing pretty well mood-wise still (feel like I have to keep assuring that), just feel like hell.

Imagine that, cancer sucks.  Someone call the New York Times!

Oh and bonus points if you know what the title of this entry is from.  It’s not a contest, just a generational thing at this point.

Hmm.

Been a few weeks, but certainly some busy ones.

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

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

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

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

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

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

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

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

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

Long ride for only being a month.

Yeah I know it’s been a while.  Been a long month and not a particularly fun one.
I noticed right away that the Revlimid/Dex wasn’t as easy on my system, if a chemotherapy drug can be, as the Velcade/Cytoxin/Dex regimen was.  The fatigue hit me pretty hard, and the first week or so as my body adjusted to a new poison I had night sweats, headaches … nothing too too severe, but not really pleasant either.

The new regimen is 21 days on (1 pill a day) and 7 off.  Right towards the end of the first three weeks I got a stomach bug that knocked me on my ass for 3 days — zero energy, not a fun ride.  The next week, my week off Revlimid, I went in for my monthly checkup with the local oncologist and to start up the Zomeda infusions again (monthly bone-strengthener, nasty side effects).  At that meeting my CBC returned a super low white blood cell count, so they began the process of getting Neulasta, an expensive WBC production drug, approved through my insurance company.

The first time I had Zometa I ended up in the hospital a year ago.  Sure enough, my temperature shot up as the bone pain started over the weekend so I started the antibiotic I’m supposed to take as per instructions from my oncologist.  Flu-like syptoms start, temperature won’t go down and I feel flushed and miserable.  It seemed like things were improving towards mid-week, and then WHAM.  Fell off a cliff last Wednesday and ended up in the hospital.  Temperature was back up, cough was uncontrollable and so painful I thought I had pneumonia again, etc.  After 8 hours there and several tests they decided it was a viral bronchitis (which my daughter and wife then got), and by Friday things were stabilized, at least somewhat.  I still have a mild cough.

Got the Neulasta shot on Monday.  Feel flushed and uncomfortable, although none of the pain in my hips yet like I got when I took Neupogen before my stem cell harvest in February.  Headaches and weird jaw aches, though.  All in all not enjoying things, AT ALL.

The WBC scare drove home the fact that until further notice I’m done with scuba diving instruction and working at the Aquarium.  I just don’t have the immune system for either, and if Revlimid is going to be beating on my WBC (my oncologist’s opinion) to the point where I need to suplement WBC production, then I need to be extra careful.

I spent a lot of time miserable and on my back in the last several weeks thinking about things and trying to fight off a crushing amount of depression.  I have one realistic hope, and that’s that the Revlimid pounds this fucking disease down enough that I can lower some dosages and feel normal-ish, at least for a while.  But this monkey on my back just gets heavier, every day seemingly.  There’s no ignoring it, forgetting it.  I wake up and take drugs for it, I deal with the side effects all day, I take more drugs at night, and then, depending on the level of headache or other pain, i either take something to sleep or read myself to sleep with no covers because the regimens make me sweat like a pig all night.  Fun fun fun.

When I was sick in bed, my daughter was coming in daily and giving me hugs while exclaiming “poor daddy” in a way that while touching, broke my heart.  She has no idea her father has a terminal condition, and this is very likely as good as things are going to be.  Fuck she doesn’t even get that the cats are dead and asks where they are constantly, how the hell is she ever going to understand this?

I spent a day watching about 10 hours of DVR’ed Chopped I had stored up.  In almost every episode there was at least one chef who had a parent die at an early age.  Talk about not being able to escape through the magic of television.

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.


So we’ve been here a little over a week now.  I’ve had a bunch of meetings with planners, coordinators and doctors and had several tests done including an echocardiagram, an electrocardiagram, a full panoramic xray of my jaw, a full body skeletal survey (20ish xray shots), a host of lung tests, tons of labwork, etc.  Beyond making sure I’m healthy enough to do the transplant, a lot of these tests are to find a baseline so that if something goes south they have a “normal” to compare things to.

All of that was a precursor to this week, where I start getting Neupogen shots to increase stem cell production and pop them out of my bone marrow for collection starting later this week.

I linked the Neupogen website in that last paragraph just for humor’s sake.  Stock photos are one of those idiotic things in life I tend not to spend too much time on, but seriously — having spent almost half a year going to infusion centers I can sincerely tell you that NOBODY there has ever had that “Yay, chemotherapy!” face from the pictures on that website when I’ve been there.

So far things are OK, I guess.  Although expensive I believe I made the right decision to rent this villa for a few months.  It’s quiet here, and peaceful, and bright but not in an obnoxious way.  Ariana seems to have adjusted, although I think she’d be happy in a shack as long as I could pull up the Bubble Guppies on Amazon Prime Video.  The shopping is amazing in this area and everything’s very convenient.  The weather is great too — it’s been so long since I lived in California that I forget what it’s like when it’s just perfect every day, but you can see why people come to similar climates during the winter.

I finally got my In-N-Out burger too, a double double.  It was heavenly.  I bought a commemorative t-shirt to remind me of how good it was, in fact.  I forgot, however, half the secret menu stuff so I just ordered off the menu like a tourist.  Ah well.  I know that’s not exactly the first line item on the anti-cancer diet but my diet is super restrictive for 100 days after my transplant so I have to get in the bad stuff now.  That’s my excuse, anyways. And if people continue to bitch after that I can bust out the BUT I HAVE CANCER card.

A little uncomfortable guilt never hurts when an In-N-Out burger is being questioned by health Nazis.

Mentally and emotionally …  I’m OK.  I mean I’m freaked out, but as I’ve mentioned before here when you’re out of choices the mental state doesn’t really matter, does it?  I’m so young compared to everyone else here, and that’s been difficult.  One doctor, an ENT guy I saw Monday morning, even said the dreaded “you’re too young for this” line.  He was cool and we were having a good chat so I didn’t mind, but that constantly occurs to me here in the land of Where Wealthy White People Come to Die That Hate Florida.

I wonder what the elderly patients think, seeing me here.  I would imagine a mix of empathy and thankfulness (that they didn’t get myeloma sooner).  I feel empathy and jealousy (that I didn’t get myeloma much later), so that’s probably close.

People have been coming out of the woodwork in my life lately, and that’s been appreciated although difficult to deal with.  As an introvert who’s only regular public interaction was either protected by the anonymity of writing or the expertise of being a professional (diving, portfolio management) this is a new sensation and experience and not one I feel like I know how to handle.  Perhaps nobody does?  I’m sure there’s a whole barrel of monkey’s worth of discussion there about how this is deeply rooted in some inability of mine to deal with people caring about me or similar.

Weird, the things you come up with and/or realize when you are just typing your thoughts.

I’m waiting while Amy gets ready to go, procrastinating fighting Ariana to get her clothed while she watches some edutainment garbage called Super Why, to go to Over Easy North.  Found this place last week while trying to find a good place for breakfast and noticed it was on Triple D.  As much as I hate the host of that show I have to admit he showcases some rocking places to eat, and today, with this Neupogen flowing through my arm like an undesired reality, I feel the need for some serious fucking breakfast.

 

Post-Arizona.

A lot has happened in the last few weeks, I just haven’t felt like writing here.  Not even sure I feel like it now, but as it’s been two weeks I should probably provide an update.

I’m still struggling a bit with the scuba thing.  I’m not sure that will change, but I suppose much like the physical wounds not healing as fast due to a low white blood cell count, neither are the emotional ones.  I cling to the life I had still and I have yet to embrace, if I ever will, the fact that that Rich is gone and a cancer patient remains.

On the bright side, I went down to the Mayo Clinic in Arizona and not only accomplished all of my goals but got some good news for a change.  Or at least as good news as it gets when you have an incurable form of cancer, anyways.  Dr. M. and I got along well and he agreed to take over my care — meaning no more Minnesota trips or wondering why my doctor there wasn’t contacting me.  Secondly he disagreed with Dr. F. here locally and wants me to stay on the current chemotherapy regimen (Velcade) and showed me a few charts about how not only are my numbers OK but that they are in some ways preferable to an immediate drop to near 0%.  Lastly he told me I do not have to be fully in remission, as I have been told previously, to do the stem cell transplant, so we’re still looking at mid-January for that.

The Velcade thing troubles me a bit because that’s a big fucking deal, but it makes sense and justifies why I wanted to be treated by the MC — this is the advantage of having expert doctors.  If it wasn’t for that opinion in a week I’d be done with Velcade and my life would be that much shorter.  Kind of scary, really, especially since I really can’t blame Dr. F. here locally for his opinion.  He simply doesn’t deal with this form of cancer enough to deviate from what he understands to be the best way of keeping me healthy.  It’s that “understands” gap that kills you eventually, though.

One of the cool things about the new doctor is he specializes in younger patients with myeloma.  Not sure at 43 I qualify as younger but statistically I’m still on the skinny end of the curve for having this.

Anyhow that’s the latest news.  I’ll be heading back out to Arizona in mid-December with my wife to visit Dr. M. again and meet with the transplant coordinator and social service folks to deal with the logistics as long as things keep progressing.

Given the holidays coming up and expected emotional turmoil those, my birthday and more importantly my daughter’s second birthday are all coming up (all within the next few weeks) I may or may not be here much.  I have purposely tried to avoid thinking about most of that on an emotional level for obvious reasons but there’s no avoiding it as it happens.