Category: metanarrative

Dana Jennings on Libido

Dana Jennings was/is writing a weekly blog post about his fight with Prostate Cancer.  O pointed me to this one about libido. While my situation isn’t Testosterone related, the way he describes his libido just vanishing are so much like my experience of the last two months.

As recently as two weeks ago, my libido hadn’t yet checked out. But since then, hormone injections — like the oncologist’s elves — have kept doing their job, which is to suppress testosterone. No testosterone, no sex drive, and, my doctors and I hope, eventually no prostate cancer.

But even with the promise of being cured, the physical changes in my sex life and, more shockingly, my recent loss of interest in sex, are among the most difficult aspects of having prostate cancer — not just for me, but for my wife, too. Men often don’t want to talk about these changes, as if words and impotence couldn’t possibly coexist.

My Mom on Hair

My mom wrote me back about the hair…

when I was on the prednisone for 2 yrs, my favorite barrette , that I had had since college, fell out of my hair in the ocean in Hawaii.  That’s when I knew I wasn’t imagining that there was a considerable change.  Didn’t get it all back, but most.  Drugs play alot of hardball on your body.  Fortunately, you have some to spare, in the hair dept, and it is not apparent  to the familiar eye.

Dad ran into Dr U last week, and he said all the side effects will be gone when you are done with the treatment.  That is something to look forward to.

that, and your Grandpa Morrie did not loose his hair, nor did his brother Saul

I remember when she lost that barrette.  I didn’t understand what the big deal was then.  I get it now.

A Pat on the Back, and some Goals

Things that it is important for me to remember I have overcome:

  • Mouth lesions (twice)
  • Dysesthia is better
  • I have commuting routine
  • Hand lesions are better
  • My eye lesions and eczema are stable and not too bad
  • I am making food for myself and O (the independence is huge)
  • The lesions in my nose are better, though not gone
  • My genital lesions are gone
  • I have not had any major homeless-person-style dysesthesia attack in the street since I returned to NYC
  • I am much better at regulating my body heat outside which helps the dysesthesia
  • I can go grocery shopping

Things that are happening that I am managing to get through:

  • I still have dysesthesia, though milder
  • I still have major itching on my extremeties, and my lower legs and forearms are covered in scabs
  • I still have major heat sensitivity
  • My body still aches if I don’t take Tylenol and advil every six hours
  • I have lesions in both of my ears, with painful scabs
  • My mouth is so dry and raw I am having trouble eating: last week I actually couldn’t get most food In or bite on a sandwich because of the pain, now it is just uncomfortable to do so
  • I am struggling with holding on to my libido

Things I seem to have avoided entirely:

  • I am not depressed
  • I have not lost my appetite (though I have lost much taste, and gained much weight)
  • I have remained phenomenally productive in the studio
  • I was able to finish my book

Goals:

  • I need to meditate more
  • I need to leave the studio earlier
  • I need to exercise (bike or pilates)
  • I need to be more emotionally present for O

Birthday Wishes

I turned 31.  x writes me:

officially in your thirties

because i think you’re 31, yes?

1. your pants start to fall off of your ass and so you spend more of your time than you ever thought possible with this singular task: pulling up your pants.
2. it seems you’ve been privy to eyes that don’t need glasses, but i suspect this curse of seeing will haunt you at some point, too. i predict your thirties for this one.
3. more time for collaborations gone wrong like the email you just sent me from that weird powder-paint-guy. (what was his context anyway?)
4. when good things happen they are REALLY GOOD but
5. when bad things happen they are horrible. oh, but you’ve been living with this for almost a year now. sigh.
6. you think about time in chunks of years instead of chunks of days.
7. your hands start to look old and veiny (have you noticed this yet?)
8. you realize even more than you did in your twenties the importance of your friends and family.

this is my way of saying happy birthday to you.
because, dammit, i’ll always be a few years older.
x

Midpoint / Birthday

I’m thinking of doing some Enron Accounting, and coming up with some framework in which my Birthday (Dec 22) is halfway through my treatment.  So I can have a party.

I just completed week 12 (of 48).  By my birthday I will be in week 19 of 48.  BUT if you count the 4 weeks of IV IFN I did, I will be at week 23 of 52.  Which is almost 50%.

Maybe I wait until January 15th, and then I will be very solidly  halfway through.

In other “halfway through” milestones, I’m in my 9th month of this.  And I have about 9 months left of the IFN.  So I am kinda halfway through *something* now.

The Placebo Effect

Apparently doctors regularly proscribe drugs for their placebo effect.  The nytimes has an article detailing the practice.

I myself wholeheartedly believe in the effect.  When I was put on a .75 mg dose of Klonopin, it calmed me down immediately.  It actually calmed me down even before I got my prescription filled.  Later, as I was recounding the medications I was on to a nurse, she said “that’s not doing anything!  that’s not enough to be effective.”  and i said “Shush!  The placebo effect is working just fine.”

Interferon’s History

From O:

Uh, this was the first google result, but not the one i intended:

http://query.nytimes.com/gst/fullpage.html?sec=health&res=9806E7DB1239F932A35753C1A963948260

it’s from 1985! it said “‘It’s been a medication in search of a disease.'”

shit, and look at this from 1983:

http://query.nytimes.com/gst/fullpage.html?sec=health&res=9807EED71239F931A15750C0A965948260

early AIDS crisis! oh wow, it contains the sentence, “Most researchers
believe AIDS is caused by an unknown virus.” actually, that’s a super
interesting article, from an historical perspective…

i am totally liveblogging this google search!

ok, actually, there are almost 6,000 NYT articles related to IFN:
http://query.nytimes.com/search/sitesearch?query=interferon&srchst=cse

super interesting. lost of uses, lots of side fx…

this is the one i was looking for:
http://health.nytimes.com/ref/health/healthguide/esn-hepatitisC-ess.html

yours in sleeeep

The New “Normal”

About 10 days ago I had a pretty important conversation with my naturopath.  It had two foci: my new Normal state, and confronting my fears about feeling out of control.

He pointed out that over the last 7 months (it is now 7…) my emotional and physical baseline for what was “normal” has fluctuated wildly.  And I don’t really remember all of these discrete moments.  All I remember is maybe the last week. The here and now.  Which is always not quite what I once was able to do.  But the point was that I am doing so much better than I was after the surgery or during the IV IFN in Portland. And I have to accept that things have changed and that I have a new standard of “normal.”

A lot of acceptance that has to happen during this year. Its okay to be a new normal.  My new normal changes.  It is better than it was a month or two ago, but it is *not* my old normal.  It will keep oscillating a bit.  But hopefully it will stay high.

The other thing we talked about was my anxiety that “i can’t take care of my life”.  The thought and the fear spin out of control.  And attaches itself to all kinds of other toughts.

But the fact is, i can take care of myself.  Mostly at least.  I have to look at these things specifically.  And really ask if they are true.  Its not a pep talk.  its facts.  i’m doing these things.  i can do this.

If i call myself out on a *specific* fear (e.g. that I can’t make myself dinner, that i can’t do creative work, that i can’t go to the grocery story), i see its not true, or i see it is true (and i do something about it – i ask for help).  take it out of mental torture.  look through it and see the truth, or accept it and figure out a way around it.  otherwise it will eat me.  i eat it, or it eats me.

i need to write down a journal of stressful thoughts.  and then question them.  and they’ll loose my power over me.

i will bring the darkness out into the light and see where the dust settles.  and then from there, i can figure out how to make sure i’m supported in terms of the mental down.

so to start, here is a graph of my changing normal.  from december 06, when i was having a rough time, feb when i was diagnosed, through the surgeries, and IFN treatments.