Have Yourself a Merry Little Christmas.

I've probably written about this before (thanks, chemobrain!), but I often wonder lately, when the emotions break through the indifferent aloofness that the LexaPro seems to lock me into, how devastating the experience would be were it not for the drugs.  Not that this would have required a MENSA-level intellect to predict but the holidays are turning out to be tough ... whether it's the incessant songs that always sounded a bit sad to me, like the one mentioned in the title of this, or of the usual "I wonder how many more of these I get to spend with my daughter" thoughts or just seeing the happiness the holidays bring others, it's difficult to maintain an even keel these days.

Not helping is we're rapidly approaching (assuming the numbers have continued to at least trickle down) stem cell transplant time.  Months ago that was some nebulous thing in the future that seemed too far away to be worth worrying about.  Now it's a real thing ... I have to make plans soon to get out to Arizona and start planning logistics, etc.

So yeah, Merry Christmas 2013.

I haven't been sleeping well at all lately.  My dreams, the ones I remember, are of things like me passing away in Arizona by myself and my wife getting the call back home while my daughter is in the background crying and yelling for her daddy.  My weight is up and I can't seem to get it under control even though I'm not eating bad -- a fun side effect of the antidepressants, apparently, but somewhat counter-productive and ironic given that I spent the first half of the year before the cancer bomb dropped losing a ton of weight and starting to feel good about how I looked again.

What's odd, if that's the word for it, is I spent most of my life dreading the holidays.  My family wasn't very holiday-ish and it tended to remind me of what I didn't have and would have liked to experience.  Now I have it ... a loving wife, a child to dote upon and treasure the holidays with, and voila!  Terminal cancer.

And people wonder why I have a difficult time keeping my composure when they bring up things like "God" around me?

Two observations.

Random thoughts today.  One, a "busy" cancer center is a concept that sucks on a variety of levels.  Two, leaving chemotherapy I'm torn between wanting to just slink away and curl up somewhere dark in a fetal position and wanting to shout from a mountaintop "I just had chemotherapy" in the hopes that someone would just give me an empathetic hug.

I Wish.

I feel sometimes like I should just change the name of this blog to "Depression Spiral" or something similar.  In over a decade of blogging I've certainly focused more on the negative than the positive since it's cathartic for me, but there was positive there before.  Now it just seems darker each week, a continuous descent into the depths of disappointment over this diagnosis and metamorphosis from what I was into CANCER PATIENT.

In other words I'm not adjusting well, in case that weren't obvious.

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. 

That Whistling Sound.

It's been difficult for the past few days to not feel like life is passing me by.

A group of peers recently finished their journey towards becoming scuba instructors, and as I've read the updates and checked out the pictures it's been difficult not to let jealousy and even some small amount of anger and frustration through.  Not at any of them, certainly -- other people's success or failures have no impact on my own, and I'm definitely happy for a couple of them (don't know the whole group).  It's just that it's a reminder of where I was going and what it meant to me.  Took me a few days to figure that out, to understand why this was upsetting me this weekend, but it came to me last night as a minor epiphany. 

Happy Halloween.

Or it would be, but on the way home from the colonoscopy yesterday I started getting sick.  Seems like just my daughter's cold so far -- fever is 98 and I'm not feeling too too terrible, so that's good.  I never liked being sick but with my blood counts all fubar'ed it's apparently somewhat dangerous now, so there's some anxiety there.  Took the day off, put the Xbox in the bedroom and just trying to recline as much as possible and drink OJ.

Figured out the hard way (or easy way, really) last night that mixing a Xanax with NyQuil is a great way to (a) sleep like a zombie and (b) snore so badly your wife leaves the bedroom.  Which I feel bad about because apparently the cats kept her up all night and now she's the walking dead.  Sigh.

I woke up during the colonoscopy yesterday.  I didn't realize it until we were halfway home and I started getting my memory back, and was thinking "man I had some weird dreams during that frigging thing."  Turns out after reading the paperwork that I did in fact wake up during it.  That must have been awkward.

On the bright side they didn't find anything bad in there.  Didn't think they would but the way medical news and I have been doing lately I'm almost surprised they didn't find something to hasten my demise a little faster.

Not Good News.

Went in Friday to start my third cycle of chemotherapy and talk to my local oncologist about my results.  There are two primary numbers for my particular flavor of multiple myeloma that I'm trying to reduce to close to zero, igG(S) and igG Kappa.  Don't ask me what they mean -- they're just numbers to me representing this disease and the explanations are a bit beyond my comprehension.  Anyhow, after 2 of 4 prescribed chemotherapy cycles I've only made a 25% dent in the igG(S) and really haven't changed the igG Kappa.  According to Dr. F., that's not a good sign that the CyBorD chemotherapy regimen is working.  He said generally you'd expect a more substantial impact up front for a variety of reasons, and that at this point it seemed likely that (a) I'd need to change regimens and (b) the chances of being ready to do the stem cell transplant by January are low.

Learning all of this was like getting slapped in the face with a bag of bricks.  I just can't seem to catch a break with any of this, and I feel like I'm being railroaded towards a fairly unpleasant demise every time I get more news.  I cried in the car driving home, something I haven't done in a long time -- even through the LexaPro it's just too much.  All of the old thoughts about not being around for Ariana came rushing back, etc.  I know there are other therapies and that it was wishful thinking to believe I could have any semblance of normalcy in life after being diagnosed with this, but whatever glimmers of hope I had for that just got trampled Friday.

On top of that this was a Zomeda infusion week, and sure enough starting Saturday that fun began again.  Nothing as bad as that first cycle but really cloying bone and muscle pain that has lasted until today.  I feel like I got thrown out of a car, if that helps paint the picture.  New this month was/is that I feel like I sprained something in every muscle in my shoulder blades on my back ... just an odd sensation.

The plan is now to see what Dr. M. at the Mayo Clinic in Arizona thinks about everything when I get down there on the 12th.  I'm thinking if we hit it off I'm going to have him take over my care as well -- I'm not sure what the point of Dr. K. in Rochester is when I've never met him and they're all on the same team.  Minnesota is too far from me while Arizona is an easy trip at any time of the year, too hard to get to, can be inaccessible in winter and I have no connection with the doctor there.  I'm sure he's a genius like the rest of these guys, but I like feeling like the people in charge of my life care.  So we'll see.

I switched therapy to be twice a month since (at least up until this weekend) the LexaPro was having a significant impact.  The timing of that, as well as the rest of all of this shit, is really making me feel like there's some force out there taking a direct interest in fucking me over as much and as insidiously as possible.  I just don't get it.

Weird.

Had an appointment with my GI doctor today, the one who originally ordered the tests that led to the discovery that I had multiple myeloma.  Was strange -- he teared up at some points during our conversation, which is now the second time I've experienced that.  Much like my last impression when it happened with my original doctor at the Mayo Clinic, while it's nice to know your doctor is so connected to you and your situation, it's also somewhat of a confirmation that you're pretty well fucked.

They are scheduling a colonoscopy next week.  I had something light up on the PET/CT scan that I did, and while nobody seems concerned (they had just done one a year ago and apparently things don't happen that fast in your colon), I'd like to be reassured nothing is going wrong there if nothing else.  More importantly however my GI doctor believes since the Mayo Clinic requested it be done that they might not proceed with my transplant if it isn't.  So one more thing to stress about, although given the fact that everything feels fine there (in fact better than usual, really, considering I was seeing him for recurring diverticulitis) I'm not too worried.

I am, however, utterly sick of doctors at this point.  Nothing against any of mine, I just don't like medical stuff and I feel like my life is one big fucking doctor's appointment.  I want to be normal again, to not have the weight of this nightmare constantly bending my back down like a backpack full of rocks.  I want to be happy, and feel what "carefree" is like again.  I don't remember it anymore, don't remember what it's like to have nothing to stress about (much less a terminal disease).  I stare down the barrel of this every minute of every day now and it's so hard to muster the strength to keep going, to keep telling myself to get through the day and the one tomorrow.  To convince myself I'll have plenty of time with my daughter and to do the things I wanted to do in life.

Monday.

Well some resolution today ... for the past several weeks I've been dealing with trying to get my stem cell transplant consult set up in Arizona at the Mayo Clinic.  I was supposed to be seeing a certain doctor that was a recommended colleague of Dr. M's from the Rochester Mayo Clinic, but with her leaving the MC things got left undone.  A few weeks ago I was still trying to set this up and found out I finally had an appointment but it was with someone doing their fellowship, that they were treating it like an initial consult (which cost $6,000 in Rochester, so yeah, um "no"), etc.

Anyhow, I have been stressing out about this for several weeks now, trying to get people on the phone and coordinated, etc.  I am supposed to have the transplant after 4 cycles (months) of chemotherapy, and with the 2nd cycle ending last week and them needing about 6 weeks to set up a transplant (giving me a 2 week window) I had to get this all worked out.  So I FINALLY got this settled this morning and now have an appointment with the doctor I was originally supposed to be seeing.  Amen.

Not that I'm all fired up to get a stem cell transplant, but at least now I'm seeing the intended doctor and I have one less thing to check off the to-do list.

Mentally and emotionally things have been weird lately.  I think the LexaPro has definitely helped, so that's good.  Ditto the therapy.  It's still hard to shake this "fuck me, I have cancer" thought though, and the chemotherapy taking slightly longer to rebound from each week isn't helping.

Hoping for good numbers this week -- not sure what the implications are if they aren't, and I had a nightmare about that this morning.  Fingers crossed.

Zzzzzz.

Every week chemotherapy seems to step up its game a little quicker.  Feel weird tonight ... fatigued, but like everything on my body just weighs about 10 pounds more than usual or gravity is stronger.  Hard to explain.

A week later.

I tend to write, at least blog-wise, to exorcise things.  Perhaps I should write here more but sometimes the need to try to scrape something off of my soul by writing it down here is overwhelmed by the need to just not think about this shit anymore, if that makes sense.

It's been a hard week (they all seem to be since I found out about this disease) as things go.  It's amazing how something like this can threaten your sanity, your relationships, etc.  How difficult it can be to know what the right decisions are, and if you are being selfish if you play the "cancer card," how to gauge how much you can lean on your caregiver, if you should cut toxic people out of your life, etc.  Little decisions and actions take on monumental weight in light of having cancer and the smallest thing can, at times, feel like it's what causes it all to fall apart.

I don't want to get into too many specifics here, just to keep things fresh and updated a bit.  I'm dealing with some seriously annoying issues between the Mayo Clinic in Rochester and the one in Arizona, and why I'm not scheduled to see the doctor I was specifically recommended to see there or why they seem to want to start everything from scratch (repeat tests, etc.).  There's a communication breakdown I am desperately trying to fix this week and it's stressing me out to say the least.

Healthwise I'm OK -- it feels like every week I feel a little bit more tired and achy, which I'm guessing is because as my immune system gets overwhelmed a bit by the chemotherapy it can't heal me as quickly.  I've noticed, for instance, that while it used to just take a week for the giant red blotches where I get the Velcade shots to fade now I can still see 3 clearly and the fourth as well if I look hard enough.

I'm tired, though.  I've been desperately working with my spouse to come up with ways to make things more peaceful on the weekends as it feels like either I'm in bad shape physically or we're going at it and that's fucking me up emotionally and mentally.  Either way I don't feel rested after the weekends anymore and working 40-50 hours a week I'm not sure when I'm supposed to be healing and de-stressing.  Like I told her, I feel like between her, all of the drama with our various parent's, having a toddler, my job, etc., I don't have time to have cancer.

Somehow I'm guessing it's going to demand a seat at the table regardless of my opinion, however.

Pondering.

In a weird mental place this week.  Not sure how to even respond to it, but I guess that's why I go to therapy now once a week (to find out).  Feel helpless, sad and a bit lost.

I can't avoid the feeling that this is all so surreal, that there either must be a mistake somewhere or that I'm going to go to the doctor and have them tell me it's all gone, miracle!  But I know that's not only not realistic but beyond wishful thinking and into pure delusion.  I have cancer. 

I don't know why I have cancer, however, and the lack of causality and my focusing on it a bit this week is bothering me.  It's impossible for me, being me, not to continuously go there, and it's frustrating to say the least.  Doctors have no idea so they tell me things like "there's nothing you could have done differently," but I know that not to be true.  Everything has a cause -- in this case science just doesn't have the answer yet.  And it's probably something so complicated that the answer wouldn't be an obvious one, a cocktail of variables that collided just right to fuck me but good. 

My daughter is back on a "daddy" all of the time kick, which is sadly bittersweet.  I love it, and her attention and desire to get another hug or share things with me, but I wonder how long I get to enjoy it.  I despise that this time has to be tainted like that but I'm not sure how to avoid it -- it's not like the thoughts are intentionally dug up, they just appear.  We walk to the playground in the early evening as a family and it's hard to avoid the thoughts, as I watch her play and smile and giggle and experience, of how much more I get, of why this had to happen to me.

I need to get the fuck out of this mindset, I just haven't the slightest idea how.

On the bright side I think I got most of a good night's sleep last night ... that's a first in about 3 days, so hopefully I can repeat it tonight and get my mental, emotional and physical strength back up to at least some sort of base level soon.

Another rough one.

Hard weekend (they all seem to be getting that way lately).  Had a lot of fatigue on Friday and Saturday, and then Saturday night my stomach decided to stage a coup on the rest of my body and my sleep schedule.  Woke up at 3 am about to vomit, which I managed to avoid with a Zofran but was up the rest of the night with abdominal pain.  Threw up several times later in the morning anyhow so that was somewhat of a waste.

Hung out in bed most of Sunday trying to get some rest but just couldn't sleep.

Called the Mayo Clinic today to see where we're at with me getting out to Arizona to meet the doctor Dr. M. wanted to do my stem cell transplant, and Dr. M. left last week.  Sad, but knew this was coming.  Sounds like things are progressing, albeit slowly, to get me out to Arizona.  Hope they light a fire under things because I can't just book a flight next-day and pop out there.

Super-stressed this week, hope things improve.

Back at Disneyland.

Forgot my damned Kindle so blogging from my phone instead to pass the time. The infusion center is busy today, but at least it's fairly quiet.  I've talked about it before but the usual symphony of suffering in here just makes a depressing experience more depressing.

I wish I had something to exorcise by writing today but I just don't ... I'm on a fairly even keel as far as things go.  Certainly not happy but not in a dark place by any means.  Just sadly resigned, if I have to "be" something today.

Wish I could be something else ... Like not needing to be here, not knowing this world exists.  Most people have no concept of how much their blissful ignorance protects them.  I miss that, perhaps most of all.  Well that and the feeling that I had some control over my destiny and that I could put some faith in probability and causality.

Monday reflections.

I couldn't get on here this weekend -- just too much emotional stress, anxiety and fatigue at every level.

Went in for chemo on Friday and met with Dr. F.  They only had results from the third week of chemotherapy (so we'd have something to talk about).  The "bad" numbers, as I understand them, have gone down like 10-15%.  He termed that "average" and let me know that it's generally not linear so not to worry, but obviously I was hoping for something more extraordinary.  We'll see what happens in a month, I guess.

I apparently managed to forget to take a Prilosec Saturday morning because my stomach bugged me all weekend, and although I have not yet (knock on wood) had as bad a time of this first week's treatment as I did previously (the Zomeda infusion) my body just hurts.  Tons of back and shoulder and leg pain and stiffness.  It sucks how that just wears you down, but the deeper problem is it's just the jab that gets thrown out there ... the punch that actually hurts is the overhand right that follows when you realize, as opposed to when you might normally feel like hell, that even when it goes away you still have cancer.  In other words if I felt like this and had the flu at least I'd know at some point it was going to not only go away but not come back and I wouldn't care.  With this situation, however, it's just another weight stacked on my back to remind me of my situation.

I got a prescription for Lexapro from Dr. F. as well, although I'm waiting until I hear Dr. M.'s interpretation and opinion on everything (and that drug) this week.  Emailed her this morning, and asked her what I should do about meeting her mentor that she's setting me up with since she's quitting the Mayo Clinic.  I'm concerned that if I don't go out there and meet with him that I won't feel a connection, and worse he won't feel one to me -- having your doctor root for you and at least acting the part is important to me.  Not sure what to do so I asked them to weigh in on it.  I should be hearing from the stem cell transplant doctor she recommended from the MC in Arizona soon as well, apparently.

Not even sure what else to say here today.  Between the stress of Friday, the stress of waiting to see if the Zomeda was going to destroy me physically again, the stress this fucking illness is putting on my marriage, I just feel empty today.

24 hours.

Tomorrow I go to Rose's RMCC to start my second month of chemotherapy and to meet with Dr. F. to find out what impact the first month had.  Pretty nervous about that.

I started up a CaringBridge site again for letting people know what's going on with my health.  I just can't see me linking this blog to the majority of people I know -- it's vastly too personal to share with random Facebook contacts.  "Hi, here's me talking about being suicidal" is not really a facet of my existence I feel like sharing with everyone I know.  I understand that these posts here aren't locked but they also aren't linked to me personally -- I don't mind just putting this stuff out there like this because it's effectively anonymous.  Different email account, etc.  And if some cyber-sleuth is so intrigued they had to Sherlock Holmes this all, well, they could have just asked and I would have let them know it was me anyhow.

My therapist woke me up this morning and told me she was getting a strep throat culture so we should probably reschedule.  I appreciated that, although I had been looking forward to our session today.  Having decided to give antidepressants a try and having had an emotionally challenging week it would have been nice to have someone kind to talk to today.  Ah well.

Bad weekend.

As if I have many other kinds, lately.  I hate saying that, I hate this "woe is me shit" that seems to have consumed my life lately.  I'm at this stage now, if you can call it that, where it's how I feel.  Last week the therapist mentioned again that people generally don't progress linearly through the stages of grief / trauma, and I feel like I'm all over the place.

Back towards the end of the first week of my chemotherapy, presumably due to taking Levaquin for that fever, Dr. F. started me on Prilosec OTC when I started having abdominal pain.  That's a 14-day pill regimen which according to the box you aren't supposed to redo for 4 months without a doctor's approval.  Unfortunately after cycling off it last week my stomach started bothering me again this weekend and I ended up calling Dr. F., who told me to get back on it and follow up with my GI guy (who said the same thing and said disregard the box instructions and just stay on it).

So yay, another fucking pill I get to take forever.  Took yesterday off to not have to deal with the stomach pain at work and to give myself a mental break.

Here we are again.

It's weird leaving the office to come to chemotherapy.  I walk out of the office building amidst other people going to lunch, going for a walk, talking on their phones, laughing, etc.  Me?  Not so much.  I'm off to RMCC for chemotherapy.  So odd, so isolating.

Mondays.

Body hurts today.  Not sure if I slept weird or it's the myeloma -- that's the problem with this goddamn thing.  Hips, back and shoulders all ache.

It seems like every time I get to a mental place where I can forget about this for a while something pops up to make sure I don't.

Sunday Night.

Felt physically fine all weekend, so again it would appear that the first week's troubles, if indeed they were being caused by anything besides simply starting chemotherapy, were most likely related to the zolendric acid.

Went out to dinner with friends last night which was great -- we went to Izakaya Den, one of my favorite restaurants in town and where I don't think we've been since before Ariana was born.  Going out and socializing, even though we talked quite a bit about my status, helped me feel more "normal."  It's just too easy to feel like you're living in isolation staying home, or just doing things family-only.  I miss that balance I had, miss the activities like being a Dive Guide at the Aquarium that used to get me out and about more.

Emotionally it's been a little hard this weekend -- while I've kind of settled into things my wife is having a rough weekend and it's been tough to battle through it -- this is just one of the fucked up parts of this whole deal I guess.  We're all human and have to deal with this in our own ways, and it's difficult, especially when you need lower stress and positivity around you, to not get it from people.  And you can't be upset about it because they are going through just as hard a time as you are, even if they don't have cancer themselves.  Frustrating, for sure.

I've had an old friend, one of the friends I went to dinner with last night and a neighbor all tell me positive stories about people they know with multiple myeloma in the last few days, and surviving it.  I want to believe, and I kind of do, I think?  It's just hard to see right now.

Bound to happen.

Sitting here in the infusion room waiting for the results of my CBC tests to get my Velcade shot.  I'm doing ok, but there's a woman who apparently is going south fast right next to me ... They just put her on oxygen and are going to admit her to the hospital.  Before I sat down I watched a little boy curled up in a chair outside the blood draw room while waiting for his mother to get her blood drawn.

I desperately miss my naïveté about this world, it's too fucking much.

The hits just keep coming.

After getting a lil' frustrated that a nurse kept intercepting my emails to Dr. M. at the Mayo Clinic I called this morning and she called me back at lunch.  Good news is all she wants to see right now are the CBC numbers with a monthly note from the local oncologist as to my full bloodwork results after my treatment on the 20th.

Bad news?  She's leaving the Mayo Clinic.  Apparently her husband's job isn't working out and with a toddler her only choices are stay there and fly home to Canada on weekends or move back, and I get that completely -- nobody wants to be a weekend parent.  She's going to start working on getting me set up to visit the Arizona stem cell transplant folks in October and is working on matching her patients up with colleagues in Rochester that she feels are a good fit.  For me she's going to suggest Dr. K., her mentor, someone she calls a genius and who is apparently very prolific with research on multiple myeloma.

I guess given the fact that we have little contact I shouldn't be saddened by this, but it just feels like a punch to the stomach right now.  Never met a doctor who inspired such confidence or that was as friendly, personable and was able to emphasize as much with my plight.  Hell I've never had a doctor repeatedly ask me to use their first name.

Ah well.

Tuesday update.

Well so far (knock on wood) my luck seems to be holding out.  Outside of some sweating at night I seem to be doing OK on the drugs this week.

Mentally I've had my challenging moments this week.  I'm still not adjusting to this "lifestyle" or whatever the hell you want to call it.  I think Facebook is to blame -- I used to enjoy using the site to stay in touch with friends and acquaintances, but now it's become a jail cell where I'm staring out through the bars at everyone free walking by.  The scuba-related stuff is the worst but it's all bad, really.  I feel like the world just stopped spinning for me and mine this summer and it's still doing 600 mph for everyone else.

Guess I should probably get used to that.

Did a horrible job of hiding what's going on from the woman who cuts my hair today.  Usually we have fun chatting but I couldn't summon anything entertaining, and she knew something was up.  I apologized for not getting into it.  I feel like my emotional control is still lackluster at best and I'd rather not get into this strapped into a chair in a well-lit public place, much less ruin yet another person's day with my story.

I need to touch base with my doctors and make sure everything is being done properly -- I guess that's a control-freak reaction, but I kind of have to be with this.  I could swear I was told for at least the first month they were going to do more in-depth blood tests to track things but I feel like they are only doing the CBC tests to make sure administering the drugs is OK on chemotherapy days.  It probably doesn't matter but I'd like to work out all of the little bugs and communication flow problems now.

Amy changed her Facebook profile picture to a multiple myeloma ribbon picture, which has let the cat out of the bag I would imagine.  I keep balking at linking this site on there -- not sure if it's because my writing here feels too personal or I just don't feel ready to "out" myself or something.  Dunno, never really hesitated to share stuff like this before but that leap feels like it's right off a cliff and I don't want to go there for whatever reason.

Long week, but fingers crossed again.

A lot to get through and I've been bad about writing here this week, so apologies in advance for the long post.

Fingers crossed.

At work today .. felt better this morning.  I feel slightly "urgh," for lack of a better word, but I woke up feeling like I at least got some rest and I knew if I stayed home I wouldn't be healing.

Talked to various people at Dr. F.'s office this morning who called to check in on me and everything is fine on their end.  I'm supposed to stay on the antibiotic for the full 10 days as a precaution, and both nurses I talked to noted that my reaction this weekend happens in slightly less than 50% of people who take the Zolendric (sp?) acid infusion.  Apparently it's usually just the first time, so fingers crossed.

In a better place mentally today although I feel like I'm having to juggle a lot of stuff and I wish I could throw a few of these balls to others, for a while.

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.

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.

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.

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.

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.

"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.

Eight Days.

Met with the local oncologist today and it went well, all things considered.  I mean I still have cancer and it wasn't all some elaborate hoax, but the meeting went well =/  We chose the CyBorD treatment option, which is apparently a ridiculous amount of pills once a week as well as a Velcade shot, a monthly IV infusion of zoledronic acid for bone strength and "survival advantage," and 1000 units of Vitamin D and 1 to 1.5g calcium daily.  On top of that I have two strengths of anti-nausea medications and an anti-Shingles drug (at high risk due to the chemo treatment, apparently).

So I start in 8 days, next Friday.  I guess I just take all of the 3 chemo drugs in one day, not sure on the rest yet.  I have a "class" to attend early next week to go over my chemotherapy, side effects, etc.

"Joygasm."

Slightly more 'hurry up and wait.'

Talked to the local oncologist's assistant here and have an appointment Thursday afternoon to get things rolling with the chemotherapy.  A little nervous about how that will go but fingers crossed -- I'm at a pretty high stress level and it would be nice if something would go my way with all of this right now.  Unfortunately my original hope, which is to be able to do my weekly chemotherapy treatments at their SkyRidge location but keep him as my local doctor, sounds like it's a no-go. 

Still going to push for it since a weekly trip to Rose is a good 1.5 hour round-trip commute at best, while SkyRidge is 20 minutes round-trip.  Seeing as how I'm having a doctor at the Mayo Clinic direct my care anyways I'm not sure what the benefits of just finding a doctor at their SkyRidge location is ... I guess Rocky Mountain Cancer Center isn't a group the way I thought it was, but we'll see.

Meeting a therapist to work through the emotional and mental issues related to all of this Friday, waiting to have a endoscopy scheduled with my GI guy to rule out some things they saw on the CAT scan that the oncologists want checked out. 

Through all of this I actually feel really good (most likely a function of a vastly cleaner diet for the past 4-5 months), which makes this all so hard to swallow.  I'm on the precipice of embarking on a very scary, very serious road and I don't feel the slightest bit sick.  Kind of broke down for a moment on the couch last night talking about this with Amy ... there we are, sitting and having dinner on the couch and watching some Food Network show similar to our usual routine for quite a while, except it's all different now because the sense of normalcy is just an illusion, is just us pretending for a moment that this isn't all happening.

Makes it hard to enjoy even a peaceful moment.

Waiting for the Sentencing.

Today has been bittersweet.  Talked to a few friends today about everything that's going on, but waiting for the local oncologist who will be handling my day-to-day stuff to get back to me regarding starting chemotherapy.  The doctor in charge of my care up at the Mayo Clinic in MN (Dr. M.) talked to him yesterday but I have yet to hear from him, and I'm antsy about it.  She emailed me yesterday that they got along great but that he preferred another cocktail of drugs to what she recommended ... Dr. M. at the MC thinks I should start chemotherapy with CyBorD (cyclophosphamide, bortezomib/Velcade, dexamethasone) while apparently Dr. F. here locally is going to make a case for VRD (bortezomib/Velcade, Revlimid, dexamethasone). 

Dr. M. had noted in our visit with her that given almost equal success rates with either treatment, that she'd rather save Revlimid (the big and newest "gun" in the MM arsenal) in her back pocket for later down the road.  That makes sense to me.  Either way I woke up at 3 am last night and the first thought that entered my head was how to deal with this discussion and I didn't get back to sleep the rest of the night.  I'm sure it will go well but having never dealt with referrals and all this, and being wired to not want to step on people's toes, I'm just anxious about it.

Anxious about not hearing from him yet either.  Not like I'm all psyched up to start chemotherapy, but I would let to get this show on the road now that the thinking, meeting and testing is mostly done.