Bleeding Zeppelin

blood

I just woke up.  With a bloody nose and an irrational desire, no… need, to listen to Stairway to Heaven.

I found a quick mp3 that was so over-compressed it almost sounded like it was live.  It was kind of an amazing experience.

And I guess the lyrics are about life, power, death and choices, and “its not too late to change road you’re on.”  I realized that for probably the first time just now.  Because I haven’t really listened to the song since the last song of my last High School Dance.  Every dance ended with that wistful “and she’s buy-uy-uy-uy-uy-ing as stairway to hea vun.”

inspiring inspiration

We had dinner last night at BH and JW’s. The food was wonderful. They played some great music we had never heard of before. We caught the 1990 hiphop references that are generationally specific.

As we were leaving BH said something to me like “you are my motivation. Whenever I feel overwhelmed or like I have so much on my plate and I think about how much you are going through and how productive you remain.” it was really touching. And affirming.

As per usual I defer much of the credit to my team of  two to three assistants. Without them I would not be able to handle this.

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

I’ve never been happier about a runny nose

I got a humidifier yesterday.  I put about a gallon of water into the air of my little apartment, and fell asleep.

When I woke up my nose was moist, if a little runny.  So much better than the barren desert craggy nasty bloody snot crust lesions I have spent the last two months waking up to.

nice mental image, eh?

Scarfs, Clothes and Memory

My godmother sent me her late husband’s scarf for my birthday.  Jack passed away several years ago; he had been waiting for, and then had a liver transplant that did not take.   i *do* remember Jack wearing it. I will wear the scarf with the strength and power and perseverance that Jack lived his life with.  it is both hugely emotional for me to receive this from her, and for her to give it.  and it is probably, in a certain way, cathartic.  memory is hard.  especially the sweet ones that we want to hold on to, but have to move on from.

i have a box that has three stuffed animals that my ex-girlfriend and I used to play with.  they all had names and characters, and histories and personalities. i don’t want to let go of those memories, but at the same time i can’t impose that on someone coming afterwards.  and those memories have turned so bittersweet.  (and not like all the chocolate i got for my birthday).  she is an *ex* for a reason, despite the funny scenarios she could concoct with two stuffed tigers and a dog.  maybe some day i will find someone to give them to, and show them their personalities and their voices. (they all have very distinct voices!)

My aunt sent me a scarf for my birthday last year.  She had begun knitting extensively when she started chemo for lung cancer.  The scarf arrived late, in mid january.  That was almost exactly the time I first went to the dermatologist to ask him to look at the bump on my calf.  It is amazing the power we can attach to clothing: sometimes I think of that scarf as her way of warning me.  Or of welcoming me.

New Drugs Helping!

I have been on Atarax for a week, and it is really helping with the itching and the dysesthesia.  Atarax is a high powered antihistamine. The Dr put me on 50mg 3x per day, and that was quite a wild ride.  I pretty much was stoned and staring at the wall, or sleeping.  I cut the dose in half, and am taking it 4 to 5 times per day, and the effects are more even, and i’m less zonked.

The really good thing is that my dysesthesia symptoms are markedly reduced.  I guess the idea is that the dysesthesia is happening in the nerve endings, so if you dull the inputs via an antihistamine, it will reduce the chances of the dysesthesia.  Or something like that. Regardless, it is working.  Which is not to say that I am not having episodes.  i have had several, but whereas I was having one bad episode per day, and two to five moderate episodes, now i have one bad episode every few days, and one mild episode per day.

Strangely, though, I have been having more episodes at night; waking up from nightmares in full pins and needles.  And generally having restless nightmare filled sleep.

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

some up some down

The good news for today is that I didn’t have any pins and needles.  I stayed inside most of the day.  The book is done.  And I didn’t do any public speaking.  And I was chill, and chilled.

The bad news is that my body continues to fall apart.  I woke up with a swollen something-or-other in my right cheek.  It is right above the back of my jawbone.  It feels like it is 10mm in diameter, but its probably smaller.  I have a corresponding lesion on my right side of my tongue.   I think I have a lesion in my left nostril.

And most humiliatingly, I have a large mole on my ass that is raw all of a sudden.  It hurts really bad.  It seems almost like it is bleeding or something.  My Dermatologist has checked it several times and cleared it each time.  So I’m not worried that it is a Melanoma.  But it hurts, and I worry about my ability to heal.  And the worst part is that I can’t see it.  I tried taking pictures, but that didn’t really work.  Try aiming a point and shoot camera in macro mode at your ass really close up and try to get results…  it doesn’t work very well!

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.