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 Zometa 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 Zometa 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.


My parents are being fucking abysmal this week.  Not going into details but what bothers me is their son has cancer and they just cannot put aside their own bullshit and deal with it, and me, on a caring level.  I don’t know if that’s because they just don’t get that I have this, even though they know it’s true (they went to the Mayo Clinic with me) or they’re just not wired right but they are piling on stress to such a level that I’m having trouble dealing with it.  That kind of sucks, you know?  Everyone else I know that is involved in this somehow, from friends to family, is being so nice and understanding, trying to do the best they can.  My own parents?  They just seem to be ignoring it.

It’s hard not to feel like that’s unfair, somehow, but for fuck’s sake, I have cancer.  CANCER.  As in terminal illness.  I’m not asking for anything more than one thing — please just don’t stress me out.  Let me try to heal and make life as peaceful as you can for me by considering what I am going through.  I’m fighting for my life here, man, and more importantly to be Ariana’s daddy for as long as I can.  Why would you risk fucking that up for me?  It’s sabotaging the little emotional and mental stability I am desperately clawing for.

Reason # 5,687,245,908,001 why you NEVER WORK WITH YOUR FUCKING FAMILY.  I’m tied in here by salary and health insurance now.  Biggest mistake I will ever make in my life (knock on wood).  Amy’s convinced they are going to be the literal death of me now.  My therapist feels the same way.

I’m coming around to that viewpoint.

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.


On a not brighter note, while talking to my GI doctor I tried to schedule the colonoscopy the Mayo Clinic had ordered since I now have a month of chemotherapy under my belt (there was concern about doing too much too soon and drug interaction with results).  Unfortunately I had one last November, and my doctor’s assistant felt that this needed to be handled delicately because there was a good chance my insurance would not pay for a second one within a year’s time.  This even though something showed up on that CAT scan I had prior to hitting the Mayo Clinic.

Because really, I needed something else to be anxious over.  I had hoped to just get this dealt with and have one less thing to worry about, but it sounds like that’s questionable now.

Last week the therapist also mentioned (can’t remember if I wrote about this) that I might want to consider going on anti-depressants.  I have staunchly opposed those for my entire adult life on the basis that sometimes life is depressing and you grow emotionally by working through things.  But this isn’t a partner cheating on me or a divorce or something else depressing to “work through.”  I have cancer.  It is certainly within the realm of high probability, unless they magically cure this before it chews me up or something beats it to the punch, that I’m going to die from this.  As such I feel stuck in this groove on the record where it feels like the weight of having this is just dragging me down the fucking toilet.  No matter how I frame it, no matter how I spin it, I keep coming back to “I have cancer.”

I hate that, I hate that I feel like I need to now chemically alter my brain just to cope with all of this.  What the fuck happened to me, to my life?  And why?

Amy went down to the Springs with Ariana for a night and to do a much needed and deserved spa day.  While she was gone I worked on cleaning up the spare bedroom upstairs, which has become a repository for all of Ariana’s old clothing and stuff that we need to either donate, put on consignment or garage sale away.  That’s the only good thing about my chemotherapy, the steroids have me organizing the house on a daily basis.  Anyhow I’m laying out stacks of my daughter’s clothing and I just fucking broke down, totally.  I feel like I squandered her first year of life adjusting to being a parent instead of being a better one, feel like I could have done and been so much more for her — and now I’m facing the very real possibility that I won’t get to make that time up.  I realized, looking through all of those tiny dresses and infant hats, exactly how much I’d give to have a chance to do that over — but I won’t get that.

I know I’m being hard on myself and that I’ve done the best I can do.  I know I work harder every day to be her hero and to be a better father.  I just can’t get out of this mental place right now — it’s just all bad, everywhere I look.

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.

This marks the first month, and cycle, of my chemotherapy.  Next week I’ll do this at Rose and get blood tests to see, presumably, my progress. As such I can only imagine next week will be stressful.
Therapy was interesting yesterday.  My therapist made the comment that while there are certainly a lot of issues here to deal with related to having cancer, that the umbrella problem is a lack of control. A lack of control over my health, losing who I was to this disease, over the guilt I feel for those around me having to deal with it, over how those close to me are dealing with me, etc.  I hadn’t really thought of it that way, specifically, so I thought it was a cool way of framing it, anyhow.
Sitting here composing this on my iPhone waiting for a doctor to approve my CBC levels to give me the Velcade shot.  The numbers are all fine, they just have to be approved officially.  Busy room today, and the relative silence is being broken up by a patient throwing up in the corner and other  fun reminders of where I am, what I have, and how much I wish neither were my reality.
Insurance is fucking around with refilling my Cytoxin prescription (one of the three-drug regimen drugs in my chemotherapy).  King Soopers called to let me know the insurance company won’t pay for refills, so I’m now waiting for the oncologist to let me know if that’s their problem or mine.  It’s only $140 a month if not, I think, so nothing too troubling, but annoying.
Debating going to church lately.  Not that I suddenly believe, but the hits just keep coming this year and it’s hard not to feel like there’s a divine entity or voodoo curse with a strong interest in fucking my family in all kinds of fun ways that apparently I owe some sort of apology for.  Let’s review:
  • I was diagnosed with a rare cancer,
  • Amy’s sister had a horrific accident,
  • We had to put the dogs down, both of them,
  • Amy’s parents’ dog Chloe died,
  • I have a leak in the dining room, presumably from the roof,
  • Amy’s best friend in the neighborhood is moving,
  • My father has to go see a glaucoma specialist,
  • My mother is seriously fucking with my wife’s mental health,
  • And oh yeah, I was diagnosed with CANCER.  Just in case I hadn’t mentioned that recently.
I was bemoaning this a bit last night to Amy when she cautioned me that things could definitely get worse.  Well yeah, but fuck, not by much you know?  Where’s the fucking good swing of the pendulum?    And why do I feel like the anti-Job?

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 zoledronic 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 naivete about this world, it’s too fucking much.