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.