Diagnosis: sleepy

I went to my naturopath in Portland on Monday. Showed him the report from my sleep study and discussed all my continuing symptoms, and he made the conclusion O and I had already arrived at, but he put it so much more succinctly: I was sleepy.

I was sleepy, and not dreaming. So when I was talking garbage in the middle of the night it was because my regular dream cycle was not happening. And the dream cycle is where you empty your mental garbage can. I had not emptied my garbage can for months… Maybe more than a year. So all this garbage was overflowing and had to go somewhere: it comes out as sleeptalking in my all-too-light sleep cycle.

For five days now I have been on melatonin before bedtime. Still on klonopin and seroquel, so now I am on THREE sedatives. I sure am sleeping now. 11 hours a night. I guess this is what my body really needs right now.

It was my birthday on Tuesday. We all went out for a nice dinner. O had already given me presents in NYC because they were too fragile to make the trip to and from. I had a good time, but in my head my cancerversary has become a more important milestone for me right now. Maybe this will fade after I hit two years, maybe it will take five, but for now the end of February is where I am looking towards.

One of the things I was going to talk to my naturopath about was the transition from being a patient to not being a patient. I hate the “survivor” word. But regardless, my residual side effect symptoms have not gone away, nor has my energy come back in full, but I don’t know whether to wait for that to happen before I begin acting normal again, or whether to act normal as a way of helping break down the psychological barriers to that return. Of course it is a balance, and of course I am pushing myself too hard, but I thought it might have been useful to talk about. Maybe next time I am back here in April.

Things falling apart

Broken iPod Touch

I just broke my iPod, and found out that my mileage accounts have been cleared out on a technicality, all within 60 minutes…

At first the iPod breaking didn’t phase me. Am I that meditative? Am I that drugged up?

It is just an object. There is no data lost. The screen is cracked, but I can still navigate and retrieve what little data is on there.

Then I started to feel bad. Defeated, or something. I sat down to make a plane ticket to Portland for July for my last month of IFN injection. O and I are going to PDX for a better climate for my last month of injections. If all goes well and I don’t have to have any breaks (cross my fingers) I will be done on Thursday July 23rd.

In two weeks, I will have four months before I go to Portland. Somehow going to Portland feels okay to substitute for ‘being finished’ even though there will be another three or four weeks of injection there.

I figured that I was flexible with dates, and I had a bunch of mileage to use, so I fumbled my way through the password retrieval process, only to find out that I had *no* miles. None. All cleared out. All 104,000 miles cleared out. On a technicality of a expiration policy that i was never told about. I did the same on my United mileage account, and same story, though no love lost there, as every flight I have taken with them has been miserable, and I don’t even know if I had enough for a full ticket (with the free ticket inflation these days.)

Expired Miles

Expired Miles

It all sucked really badly. I felt really defeated. And overwhelmed in the face of bureaucratic logistics… is it worth all the headache of calling customer service, trying to get through to a human, and then the physical and emotional trauma of having to play the cancer card. To tell them that I have not been able to fly, so my miles were zeroed out for inactivity, and now i need my miles to finish my drug treatment. I’m getting dysesthesia in my hands as I type this, just thinking about it.

The thing is what I am really afraid of is that something might happen like this on a bigger scale. What if the dollar were to tumble so drastically, my bank account might as well be filled with Rubles? What if the City of New York is so hard pressed in debt that they drop all untenured faculty. I’ve been seeing some of this happening: My 401K from school (which I look at once a year tops) has half as much in it as when I last looked. O just got a pseudo-rejection letter from an academic job search, saying that despite a full slate of excellent candidates, they have decided to terminate their search without hire — They don’t have any money. Job searches are being canceled halfway through. I am trying to get my work into a gallery right at the worst possible time in nearly two decades. And I might be buying an apartment in my building at a moment when buyers and sellers are at a standoff over prices, with buyers refusing to pay current prices, and sellers refusing to admit that their apartments are worth 20 percent less than they were last last year. Admittedly, if I do buy the apartment, it will be at a significant ‘insider’ discount as per the byzantine NYC condo conversion guidelines.

first they take the miles and make them disappear. then they take the dollars and turn them into rubles, and back again. I should rereread Master and the Marguerita soon

A point of clarification, or becoming the little brother

It has come to my attention that some of my less-than-careful posting about ex gf’s has made me look like a typical dude who can’t take care of his own shit, and needs a woman to take care of him.  It was put to me in more delicate, and less annoyingly heteronormative terms.

The posts in question are here and here.  It would take way too long, so I’m not going to try to defend or explain.  I will say that they are stories completely without a context.  And that in most all relationships I have been in, I am always the caretaker.  I will admit to a mamma’s-boy binge here and there (going back to Portland for the Interferon and being taken care of,) but I am so much more my mother, than a mamma’s boy.  I am a total Jewish Mother, feeding, and caring for, and supporting, and making sure people go to the doctor, and nagging them when they don’t. I specialize in force feedings, nagging and guilt trips.

And by force feedings, I mean the kind where someone is coming off of food poisoning, or a really bad night out, and has not drank water for a while, and has not eaten for even longer.  I am a specialist at coaxing them into drinking some water, then switching to juice, and then to a smoothie, and then to toast, and then my job is done.  Don’t ask why I have such experience at this.  Again, the story would take way to long.  Let’s just say something vague like “past experience” or “history” or “my mother taught me well.”

So one of the most interesting challenges of the last *six months* (!) has been learning how to accept help, and ask for help.

I have always been a Jewish Mother of a big brother.  Well, not always.  For a while we fought terribly – I was an expert in verbal taunting, and I was still bigger and stronger than him.  I am no longer bigger and stronger *and* he practices Taekwondo, though I am probably still a better verbal taunter, though he is a very very close second.  After I left Middle School and grew out of that phase, I have always looked after my brother in one form or another.  For a while it was a burden my parents gave me.  Or rather, they begged me to take on.  Because he pretty much refused to listen to them for a while there.  I resisted for a while, and then it was just the way it was.  We both gave in to our parents’ wills. School help, life help, help dealing with our parents, etc.  I have even (and repeatedly) offered to make an appointment and pay for a proper hair cut; each time he turns me down.

The amazing thing about the last six months is that I have become the little brother.  My brother is taking care of me, taking me to drs appointments, telling me what to do, bossing me around, nagging me about things I need to take care of.  He is the dominant personality in a conversation, or situation more often than he would have been in the past.  And he is doing the grocery shopping.

When we were all home, there were moments when x and KM and LK and P could glimpse moments of my childhood.  In the way my dad showed them around the woodshop in the garage, or the way we would interact around the dinner table, or whatever.  One time S and I and my Dad were debating something; I forget the details, but Stephen was coming out on top and was teasing me about it.  So x called one out, saying “I just caught a vision of your childhood.”  I told her “Yes, but in the version from our childhood, I was S and S was me.”

And now he is leaving.  Leaving for the west coast to start a PhD.  I will miss him.  A lot.

Three pix from Portland

Here are three pix from Portland I forgot to post.

Here is the SASTM tool that my Physical Therapist used to massage my scar.  (No, its not a sex toy…) I asked if I could buy one.  The set of 6 or 8 or so costs over $4000.  Spendy little jobs.  But they work well.

SASTM tool

These are pictures of the Marquam Trail, the trail I walked on every evening in Portland.  This trail runs right behind my parents house.  You can’t really see any other houses from it.  It is protected city land.  By car and/or bicycle this is 5 minutes from downtown Portland (admittedly, it takes much longer to come back up the hill by bicycle.)  Makes me wonder why I don’t live there.

Marquam Trail, Portland OR

Marquam Trail, Portland OR

Day 19: Are we there yet?

Almost done.  Almost done.  Almost done.

Today was the penultimate day.  I should have geeked out yesterday and called it the antepenultimate day.  Oh, this is what my English Literature degree comes to.

Yesterday, the antepenultimate day, I overheard one of the nurses arranging for hospice care for a patient with pancreatic cancer.  She used the word “nonresectable” which I think means it is inoperable.  My grandmother died from pancreatic cancer.  Hearing the word “hospice” was scary, but also reminded me how well I am doing.  How healthy I feel.  How far I am from giving in and going under.

Today I gave all the nurses cookies (that my brother made) and the URL to this blog.  I gave it to my massage/healer person too.  While it was happening, I wanted it to be private from them, but now that I am leaving, I want them to see it.  Ah… control.

I’m starting to feel like I’m already transitioning back to NYC.  I made a haircut appointment (my hair is wildly out of control.)  And I made an appointment with my NYC oncologist so I can learn how to do the self injection pen.

Wait, did you catch that… my NYC oncologist.  I’m so bi-coastal I have two oncologists…  LOL.

Reiki & Anticipation

A famly friend was over, with her whole family (dog included.)  Her new sister in law is a Reiki practitioner.  (I think I mentioned the wedding a few weeks ago)  So she did some work on me.  A lot of it was similar to what my massage person has done.  Certain ways of holding and touching the feet and ankles, holding & rubbing the belly.  By the time she was done, I was so deeply relaxed I fell asleep for 3 hours.

I guess the idea is that the chi is blocked and the Reiki helps unblock the chi.  So it leads to a quickening of the healing process.  I don’t know whether it was just psychosomatic, but I was very relaxed from it.  Its hard to say.

Not so relaxed now, though.  Sunday night is such an emotionally turbulent time for me.  Tomorrow I will hopefully start the final week of the treatment.  I hope I clear the liver test.  I haven’t taken any Tylenol for two weeks, so that is not a factor.  I feel pretty good; I mean *right now* I have a pit in my stomach and have been crying off and on, but before I started thinking about the blood tests tomorrow, I was felling pretty good.

N.B. I noticed that I had a montly archive on the side of the blog.  It shocked me to realize that I had been here for so long. It has been five weeks, going on the sixth.

Somehow Saturdays are so hard

I don’t quite understand, but Saturdays are the hardest day of the week.  I make it through a whole week of infusions with high energy and good spirits, and then Saturday I crash hard.  Same as the previous weeks.  I sleep in way too late.  Have no energy.  Cry for no reason.  Can’t eat.  No fun.

Today the plan was to go to the beach.  Really, it was my brother’s plan.  To take KM to the Oregon coast, and to let one of the dogs play in the wet and.  I was the limiting factor.  He kept asking me if i was ready yet.  I was still in my bathrobe.  I knew that we were going to be getting there really late.  I felt pressure.  And then I started crying.  I didn’t want to hold them back, but I aslo wanted to go.  I also didnt want to go, but I didn’t want to give up and not go.  Oh, what a jumble in my head.

I did go.  It was worth it.  The wind was strong.  The ocean was big. The dog was really happy. I slept on the way there and the way back.

x left this morning (no beach), P left to be with his girlfriend’s family last night, and KM leaves tomorrow morning at some really early time.  LK and I are going to hang out on Monday, but other than that, my friends have returned home.  I am, of course, a little bit sad from that.  But I also know that I have all my friends in NYC when I return.  Seven days.

I’m feeling really stifled by my family right now.  I know they don’t mean to.  But it happens. I’m really looking forward to going back to my regular life.

That said, I’m scared to have to take responsibility for so much of what my mother has been helping me with.  From helping me figure out what I could possibly eat, to making it, to doing my laundry, to supporting me emotionally.  NYC/Brooklyn is going to be a culture shock.  It is going to be hard again.  And there are going to be lots of people.

Day 15: Week 3 done

That’s about the most important thing today.  Week three is done.  And I kicked its ass.

I’m pretty tired right now, but a lot of that has to do with all of the excitement from my many visitors, and all of the exciting things we have done.

The pizza party was awesome.  Our hike was really aggressive.  All the way from the bottom of the marquam trail to Council Crest (elevation 1,100 ft), and then back down to my parents house on Sherwood (elevation 600ft).

And today we went out for really nice dinner.  P picked it.

I was freaking out on the way there.  Just an exhaustion/hunger/panic episode.  Tired, and claustrophic in the car.  Everyone was loud and boisterous, and my mom was getting lost, and driving erratically.  I was crying quietly for the last 5 minutes.  And when we finally got there, i just got out of the car at a stop sign, saying “i need to get out”  and walked into an empty field/lot.  I sat down and cried and then meditated.  And then did childs pose.  It calmed me down a bit.

I had to go out again towards the end of dinner because I was so tired I was getting to the point where I couldn’t take it.  So I went out there and did a little sit.  P sat with me for a little bit.  It was nice.  The sun was setting right into our closed eyes.