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.
Amy and I were chatting during a walk earlier in the week about curing cancer.  The sad reality is the drug companies really have a financial disincentive to cure this.  My treatment is $10,000 a month, and the next drug they’ll put me on (Revlimid) is $25,000.  Make me live longer?  Sure.  Cure it?  Why would they, so they can ride the accolades into bankruptcy?

Sad state of affairs, especially when it’s my only real hope of survival.

I sat next to a woman today, Donna, who sparked up a chat with me after I offered to get her anything while I was up.  She has breast cancer, which had been under control and then metastasized (sp?) and put her back in chemotherapy.  The latest CAT scan showed it had slowed down to a dormant stage, however, so she was thankful for that.  She was a pretty recent patient too (May), so we had some things and thoughts in common to talk about.  I got the feeling, like me, she hasn’t really dealt with this too much or talked to other patients.  I gave her my therapist’s number after she expressed interest that I thought it was helping me, and hopefully it brings her some peace.  She expressed that she was bitter a lot, which I can certainly understand.

It was odd talking to someone with cancer … haven’t really made an effort to do that for a lot of reasons (most “bad,” perhaps, but mine to choose).  I don’t know that confirming that another person had the same thoughts I did was much of an epiphany but perhaps with some time to ponder today I’ll gain a perspective to grow from it.

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.

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?