Spoke a little too soon, apparently.

The last 48 hours have been significantly less pleasant.  Felt fine Saturday but woke up early Sunday morning with the chills, and then woke again slightly later with a solid temperature.  The protocol for a temperature over 100 for me is to immediately start an antibiotic, which we chased with Tylenol.  That got the temperature under control but I felt like ass the rest of the day.

We were supposed to go to a family BBQ on Sunday but I couldn’t make it and my wife, who had contacted Dr. F., wouldn’t leave me at home.  Instead her parents brought the BBQ to us, just another example of how amazing her parents are.  Warmed my heart to see Ariana get to play with her grandparents, who are amazing with her.  Another example of how I feel guilty about this, though.  I know that’s wrong, and that people are happy to accommodate, but I can’t help feeling it wouldn’t be necessary if I didn’t have this.  Not sure how to shake that feeling.

Passed out in a comatose state last night at 7:30 pm and then alternated between the sweats and the chills for the rest of the night.  We called Dr. F. again who told us to come down to the Rose ER to get checked out.  He didn’t seem concerned but was surprised I was having such a severe reaction so we all figured it would be best to rule things out.  Having spent the last week ruminating on the side effects of the drugs I’m now on (like, scary psychotic “whoa, that would suck” side effects like your jaw dying — which I didn’t even know was a possibility!), your mind tends to wander.  Is this how it ends?  Is that what the start of organ failure feels like?  That’s a fun one.

Called a friend to babysit and we hit the ER, where after 5 hours and having a ton of blood taken we were released with a reassuring “there’s nothing wrong with you.”  My temperature seems to be stabilized for now although I do have a slight chill, so fingers crossed for tonight.  Better safe that sorry, and I guess they are used to this down there.

The overwhelming thought for me for the past day or so of feeling like this has been “ahh, THIS is what it feels like to be a cancer patient.”  It’s been a really black period — I was fading in and out of lucidity this morning, plagued with visions of my own funeral, thoughts of how if this is what things are going to be like from now on I don’t want to live like this, images of Ariana asking “where’s daddy,” etc.  Just dark, unpleasant, rapid-fire.  As the images came back to me throughout the day it was hard to remain composed, especially while laying in the hospital.  Having to tell so many people at the ER why I was there, how I just started chemotherapy the previous Friday … too much.

It’s funny, almost, how the protective walls cave in … I’m laying there in a hospital bed, desperately trying not to think, not to feel, to count the divots in the ceiling tile in desperate search for some OCD train of thought to lead me away from my real thoughts.  I can feel it when the emotional levy breaks, when a tide led by a thought of Ariana fatherless or something else blasts through like it wasn’t there and completely engulfs me.

After they drew all of that blood at the ER they wheeled in an elderly woman to the slot next to me who had some sort of bronchitis thing going on.  That sent me into a little bit of a panic, but we quietly asked a nurse if I could have a mask and when we told her why (suppressed immune system, hi) she put me in a private room.  Granted after just one session my immune system isn’t as compromised as it will be getting, but still I have to be careful.

I have a bunch of friends who work or worked in the medical field who have always expressed the positive side of working there, the helping side.  It’s hard, mostly experiencing hospitals when my daughter had surgeries or now with me having to visit them as a cancer patient, to see that — I just see the hardships, the horrific stories … and now I’m living my own, I’m “that” person I never wanted to be and that I felt overwhelming empathy for.  It’s hard, especially in the grips of severe body pain, inability to control my temperature and worse fatigue than I’ve ever felt before, to not feel like the “see, it could always be worse” example.

Part of that is pity party, I know — I’m pretty aware of how much worse it can be.  Forgive me a momentary lapse of humility, though.

When we got home, Amy took Ariana shopping briefly and I had some time to reflect.  I decided to get the hell out of bed and just move, be, breathe.  I think it helped, somewhat.  We took a walk tonight with Ariana before her dinner and that helped too, just to get outside and pretend to be normal again, just a couple walking their baby in the stroller, daddy stopping for a moment to blow a dandelion in her face.  I asked Amy if we could try to make more plans with people because I feel like I’m living in a bubble right now, detached from everything except emotional stimulus that seems to take great joy in overwhelming me during weak moments.

When we were driving home today from Rose I noticed a sign for some random church with one of those faith messages on it … something like “Feel his glory” or similar.

I wish I could feel it.  I really do.  I just don’t see any glory in this situation, I didn’t need a reminder this big to be a better father, husband and/or friend, and glory isn’t what keeps popping into my head as the end of this journey.  I can spin this however I want, be as positive as I want (and I’m trying), but I’m not sure how to effectively spin the fact that unless the omnipresent (and so far infective) “they” cure this fucking thing I’m a walking dead man and we’re debating when, not if.

Try wearing those boots for a day.

The day after the first chemo treatment.

So yesterday was the first day of chemotherapy.  Man that just sounds so strange, so surreal, even typing it out.  Went down with my wife and father, who wanted to come.  It went fine for the most part — there was some confusion about my medications that freaked me out a bit, though.  The way the Mayo Clinic does this treatment and the way the RMCC does it are just slightly different — mostly in how and when you are supposed to take the Dexamethasone.  I had taken it Friday morning, as directed by Dr. F and the Mayo Clinic, but apparently the usual way the RMCC does it is to take it the day before (only a partial dose) and then the rest with the Velcade shot.

Got it cleared up that afternoon, however, so now I just await the results and next Friday’s session.


All things considered I’m feeling OK.  Had some mild nausea and some joint/bone pain, which was to be expected, a little vertigo when getting up too quickly, and I can definitely detect a higher level of fatigue than usual.  Considering how it could be, though, I guess I should be thankful.  While sitting there in the infusion room (where they do everyone’s chemo), I was listening to the nurses talking about things like “96 hour infusions” which doesn’t sound like too much fun.

Then again what I’m doing isn’t fun either, even if it’s a much more mild regimen.  I think my deal is more of a mental battle at this point … it’s hard to describe the feeling of just having done a chemotherapy session when I don’t feel the slightest bit cancer-ridden.  I have a feeling I’d be approaching this differently, at least mentally, if I was as ill as some of the folks get with this stuff.

Today (Saturday) we took Ariana out to Cabelas to get out of the house and I got sunburned just driving there and back … forgot about the chemotherapy class mentioning I need to always be wearing sunscreen outside now.  On the bright side I had a good friend I met on a diving trip hang out for several hours talking on the patio at home, though, so ended the day better than usual.  He and I, as he put it, just instantly “clicked” with the kind of kinship you find sometimes on things like dive trips, and it was nice to just kick back with a beer (well me with water) and shoot the shit for a few hours.

 

Not the best Thursday night.

Today was actually going OK, all things considered, until this evening.  Amy and I got back from dinner and I called my father back (he had left a message during dinner) who offered to go with me to chemotherapy tomorrow.  He sounded pretty broken up but I told him it wasn’t necessary and it would be an in-and-out deal.  I just want to put on a game face, get in, get done and get out and save the emotional breakdowns for home, which I’m afraid I won’t be able to avoid with everyone around me in shock at what I’m about to start having to do.


My mother called me back, apparently in secret, and told me he’s not doing very well with all of this and wanted to be there with me, so I called back and invited him.  I just can’t deal with how much this is affecting him — my dad is never emotional, much less in a crippling way.  Up until this cancer business I had only heard his voice crack in sadness twice, once at a funeral and when he called me a few minutes after he found out one of his brothers had died in a car accident.  I’ve heard it more than once this week, and that’s just this week.

Hearing my dad’s broken voice about this is just killing me.  I hear in it all of the anguish of outliving a child, of his eternal optimism just dying, etc.  I don’t know how to handle that.

It’s not bad enough that I have terminal disease, but on top of the overwhelming weight of that and what’s happening to me I’ve found I now carry this tremendous guilt over how it’s affecting everyone around me as well.  Broke down trying to talk to Amy about it while having some birthday cake a friend made for her.  Oh yeah, today was Amy’s birthday and I promised myself I would let this shit go for tonight, but I couldn’t even manage that.

It’s just too much, this is all too much.

Why is this happening to me?

Wednesday.

Sort of a zombie today.  Again spending a lot of emotional effort just not thinking about things, outside of when I have to.  Left a message last night for Dr. M at the MC and this morning for Dr. F at RMCC because I feel like there’s a disconnect between what I’m being told to do with all of this medication (when to take it, etc.) caused by yesterday’s meeting with the nursing guy.  Heard back from a nurse who works with Dr. M. who basically said use as per Dr. F’s instructions, which isn’t exactly “taking charge of my care” in my mind.  The nurse up there also said they have received nothing yet from RMCC, which is annoying.

Have errands to run for my wife’s birthday tomorrow.

Bad night.

Bad night … stressed out, short temper, the works. I think it’s the reality of picking up all of these pills at the pharmacy on the way home.  Now they’re just sitting on my desk like the grim reaper.  Feel super tense tonight ever since I put Ariana to bed and I can’t shake it off even when I’m not thinking about any of this.

Have two minor adjustments to make to my medication, so glad I went and got the stuff tonight.  There’s a more effective version of one of the nausea meds (a version that dissolves under the tongue and hits you quicker), and they only gave me 1 week’s worth of one of the three chemotherapy drugs with no refills (the 10-pills a dose steroid).  The pharmacy tech was nice, although she offered me the obligatory “sorry” about having to take all of this stuff.  I understand, it’s just a hard reaction to hear so much lately.  I’m sorry too, folks.  Not quite as sorry as my daughter will be that she didn’t have a daddy because he died of cancer, but yeah.

I know that’s horribly unfair, I know.  I’m just bitter right now, it’s just me tonight.  This just is so intense at times I can’t cope with it.  It’s not like I don’t appreciate people caring, even strangers — hell I feel guilty most of the time for existing with this, like I’m bringing down the people around me.  I’m sorry she had to deal with someone with cancer today, talk about a buzz-kill.

Frustrated.  Like my Aunt said today, it doesn’t seem fair.  Got that right, Aunt B.

Time for another Xanax and to try to sleep this mood off.

I came close to doing something this afternoon that I have yet to do, which is break out the cancer card to get something.  I called the Sky Ridge RMCC to schedule the three chemo sessions I need to do there and the person who answered the phone didn’t know how to do that since my primary doctor in their group is stationed at another location, and I started to get the “this is too much of a pain in the ass” vibe you get from people who forget the compassion side of the job.  I was a few moments from giving her the sob story but she finally got the right person on the phone and got us all set up.  Hopefully correctly.

On a lighter note (which isn’t too hard to hit after the last four paragraphs), been watching videos for the last few hours trying to cheer up and calm down while putting together an Iron Maiden playlist for a friend’s young son (5 years old?  My memory sucks).  He was singing some horrifying “Call Me Maybe” pop garbage the last time I saw him, so it’s intervention CD time.  Wanted to put some Slayer on there too but we need to work up to that, and 5’s a bit young for the lyrics of Angel of Death, Dead Skin Mask and South of Heaven.

Six should be OK for that though, right?

Chemo-educated.

Had my chemotherapy “class” this morning with the head of nursing at the cancer clinic I’ll be doing my chemotherapy at.  He was nice and calming, and walked me through what to expect, side effects, what to do in certain scenarios, etc.  I should probably go pick my pharmacy’s worth of drugs today, although I’ll admit I’m a bit freaked out by the concept.  If frigging Anthem BCBS hadn’t broken with Walgreens at least I could have gone to a drive thru, but now I have to stand in line with a compromised immune system with a ton of sick, nosy people while I pick up like 10 prescriptions.  Which being King Soopers will be handled with the delicacy, privacy and professionalism I would expect if I were having my scripts filled at Grease Monkey.

Sigh.

On the bright side, although my chemotherapy will be a weekly thing, (1) I only have to do it at Rose once a month (for an IV infusion that lasts 20 minutes and a visit with the local oncologist) and can do the other 3 weeks at Sky Ridge (about 1.5 hours closer to my house/office, round-trip), and (2) I was told on a scale of 1-10 with 1 being a stubbed toe and 10 being death my regimen should be about a 1.25.  It’s basically a ton of pills I take on my own, a shot in the stomach once a week at one of their locations, and then this IV drip business.  So hopefully that wasn’t just wishful thinking that it will go easy — what this is going to be like has been adding a whole new fun layer on top of the already full cup o’ “fuck, I have to do chemotherapy” anxiety I was already dealing with.

We even chatted about medical marijuana and hemp oil this morning, although after reading a local story on Facebook today about a Colorado family with a child in a fight with Child Protective Services due to the parent’s MMJ cards I’m just closing that avenue of treatment down for now.  I’d rather, well, die of cancer, quite honestly, than put my daughter in jeopardy.  So score one for the ignorati.

Mentally and emotionally I’ve been doing alright this week, at least for the most part.  I think most of that has been accomplished simply by trying not to think about it too much.  I had a long talk with my Aunt after the class this morning and she seemed to think I sounded good, and positive.  I don’t really feel that way, just resigned to move forward.  I’ve learned about as much as I can, I’ve stacked all the odds I can affect in my favor, and I’m now on the only road visible.

Doesn’t mean I’m psyched to be on it, though, nor do I think it takes much courage.  I’ve been given a choice, effectively, of giving up and my daughter never knowing who I was or trying to be around for her — it doesn’t take courage to make the right decision there, just love.

"Yay, chemotherapy week!" Said nobody, ever.

So I started a CaringBridge site at the recommendation of a friend who’s been super supportive during all of this and had some great recommendations for me so far.  I thought a blog made more sense to me personally, however, seeing as how I’ve blogged for half my life and I like the ability to interact via comments, etc.  Same concept, slightly different implementation, and here we are.  Although technically right now “we” is just me since nobody I know has this address and I’m reluctant, for a few reasons, to open this particular Pandora’s Box to everyone I know just yet.

I can’t even really explain that thought except that I feel like in doing so perhaps this becomes even more brutally real than it is right now.

Dropped off all of the prescriptions on Friday at King Soopers in preparation to start taking them this week.  I have a class tomorrow morning at RMCC (Rocky Mountain Cancer Center) about my chemotherapy which presumably goes over all of the side effects and “what ifs” involved.  Now I just have to get through the week.

Amy, Ariana and I got out Sunday for a few hours to visit the Fins Attached event at the Wildlife Experience down the street from where we live and then hit up the mall.  Was nice to see a few co-workers at the event, but I feel so far from that world right now.  Seeing people I know and talking to them is kind of odd now too.  Not in a “I don’t want to do this” way but it just feels like the dynamic has totally changed.  Now I’m their friend or acquaintance WHO HAS CANCER instead of just me.

Obviously some of this is my own feelings coloring perceptions, but the conversations are more intense, tougher to get through at times, etc.  I used to be whimsical, at least when relaxed, and now I feel like that only manifests itself in black humor about this.

Maybe I’m embarrassed by having cancer too … I guess that would make sense to a degree.  I know that probably seems silly, but being an introvert it’s hard to feel like I have this spotlight shining down on me and not allowing me to blend into the woodwork anymore.  Who knows … emotionally I’m everywhere and nowhere with this right now, and I have no idea when that will subside, if ever.

Lots of hardcore thoughts throughout the weekend.  Like I told my therapist (started seeing one 2 weeks ago to arm myself to deal with the emotions of all of this) I think I’m in shock still.  None of this feels real except when it feels TOTALLY FUCKING TOO REAL.  Like last night when I’m putting Ariana to bed … I do her bath, change her and get her dressed for bed, read her something and then we snuggle for a second before I hit the light and put her in her crib.  Last night though we just sat there in the rocking chair, her falling asleep on my chest while we rocked, and it was just too hard to keep the emotions in check.

When I allow myself to feel (or when it washes over me and I have no control to stop it) I feel nothing but despair right now … zero hope at all.  I’m doing everything I can in the meantime to beat this, mind you, but it’s just too fresh an emotional wound right now — I haven’t even started my treatment yet.  I just have a lot of things I can point to and say I should, realistically, have the most favorable outcome.  For example, the Powerpoint presentation (minus colorful pie charts) of why I’ll survive this cancer for longer than the average MM victim (patient?  Feel more like a victim):

  • They caught this super early
  • I’m younger than the average person going through this (42 versus 65)
  • I’m asymptomatic (i.e., nothing truly “wrong” yet)
  • I can afford the best care there is, like the Mayo Clinic
  • I have a ton of support from family and friends
  • I have a job that has already said “take care of yourself and don’t worry about things
  • I have a loving wife dedicated to getting me as healthy as possible with a well-rounded approach (diet, exercise, alternative therapies)

Etc., etc.  The problem is I can recite those at will but I don’t truly BELIEVE I will beat this. Does that make sense?  I’m still sitting around thinking “holy fuck I have cancer.”  Right now that just feels like my epitaph.  I look at my daughter and I’m crushed because I don’t think I’m going to be there for her past an age where she’ll even remember me.  And even if I am, will I be healthy enough to be a meaningful part of her life, at least the way I envisioned it?

I know I need to feel hope … but I haven’t even started the fight yet, physically anyways.  And in my defense, right now I’d simply argue that were I truly feeling hopeless I wouldn’t bother with any of this shit — I’d be out snarfing bacon double-cheeseburgers, eating tons of refined sugar and most of all not treating this as real, because I feel amazing right now and none of what I’m about to start having to do sounds like fun.

In fact it feels like I’m living Iron Maiden’s song “Hallowed Be Thy Name,” quite frankly.  You don’t get the full “Rich Blog Experience™” without Iron Maiden lyrics, btw.

But no, instead I’m eating healthier than I ever have in my life, taking supplements, avoiding all preservatives, refined sugars and enriched white flour and trying to avoid GMO’s (good luck with that).  We’ve thrown out every chemical in the house (or I’m not allowed to use them anymore).  Christ I’ve switched to drinking soy lattes.  Trust me, if I had no desire to live the last fucking thing I’d do on this planet is have a soy latte. LAST.  THING.

Yes I know Starbucks’ soy has some sugar in it.  My morning coffee (and rare occasional diet slips) gets to be filed under the “food for the soul” category for now.

Anyways, the point is if I slip into despair, sound vaguely suicidal, etc., I am at least doing what needs to be done while I work through it.  That’s about the best I can do, even if this all feels like the end.