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.
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.

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.