Tag: the fight

It is all a front

On Mar 15, 2009, at 12:27 PM, PD wrote:

i think b/c your studio work seems productive i assumed that you were feeling better. but i know you well enough to know that i might have been off on that assumption.

Yeah, duh! Of course it is all a front. It is all a way of me thinking that I am okay. Studio production is up, therefore I must be okay. Both telling the outside world, and telling myself. If I keep acting like I am fine I will be fine. (Lie.)

But these last two months have been really hard. And i’ve worn myself down.

And I’m pretty much going to spend the day in bed today. sick to my stomach. exhausted. my skin is falling apart.

Seeing things, part two

So I went to all my doctors this week.

I’ll post about my hypnotherapist in a bit, but I’ll just say that it is great.  It is really helping.  I’ll explain more in a followup post.

My Oncological Psychiatrist said that the “seeing things” was probably IFN related.  He upped my Lexapro and Klonopin to take the edge off of my anxiety and help with the pins and needles.

My Oncologist says that unless I am having “night tremors” the visual abberations are not anything to worry about.  He says that the lesions and ulcers and strange skin textures are all “to be expected.”  He said that the pins and needles are a new side effect, but that none of it surprises him.  And, he said that “unless you skin is falling off, I don’t see any reason to modify your treatment.” He was quite concerned about depression, though.  He asked a lot about that.  He said that it starts to hit four months in, and gets worse through months 7 and 8.  By the 9th month, it gets better: either you have adjusted, or you see the light at the end of the tunnel, or something.

My psychologist says I’m doing well

And my dermatologist said that all the skin stuff, and mouth lesions stuff, are not growths (e.g. cancer, or warts) but are something called Acral Erythema.  As far as I understood, Acral Erythema is a skin reaction to a lowering of blood supply at the furthest extremities.  One of the things that the IFN does is reduce blood flow to the capilaries, hence the problems around my hands, ankles, and my tongue.  He gave me some cortizone cream, which has not seemed to do anything yet.

Neitzche and Beckett

A couple of months ago, AW sent me an email that I meant to respond to.  She basically asked me what was keeping me going:

d)Your grace through this whole thing amazes me, I think I would of just went into a ball and would have completely stopped functioning entirely
e) Someone told me this when I was 19 and the doctors told me I was going to die and for some reason I think of it now a lot when things are tough, even though I’m not religious I find it comforting “God only gives you want you can handle”

I finally finished my response to her:

I guess that there are two things that keep me going: Neitzche and Beckett.  (LOL)

I was probably in 10th or 11th  grade when I first heard a bastardized version of Neitzche’s quote “That which does not kill us makes us stronger.”  It is totally fraught, but really something i have lived by.  i have really pushed myself in my life.  really to the edge mentally and physically.

one semester in college i worked so hard (and was so strung out on caffeine) i collapsed and spent a week in the hospital.  fever was 104. but after i got better i think i was stronger for it.  though, i always worried there might have been some brain damage.  i never was able to pull all-nighters again.

In Waiting for Godot Estragon says “I can’t go on like this” and Vladimir says “That’s what you think.”  Sometimes it is translated “That’s what you say.”   But actually the French is “On dit ca”  or “One says that.”  Which I think is a subtle difference.  But really, what else am I going to do?  I’m waiting.  But i’m not just sitting around waiting.  I’m actively waiting.  For what, who knows.  Godot?  The White Light? The Singularity?  The End of Oil?  Whatevs.  I’m just trying to keep myself entertained while I wait.

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.

Feeling like crap

My mouth sores are mostly gone, but now I can’t swallow without pain on my left side of my throat.  I called the Dr, and these are not conventional side effects from the IFN. I was told to treat it like a cold, and if it is not gone in a couple of days, to call back for an appointment.

I’m queasy.  I’m wearing my ice vest inside my appartment with the A/C on.  I need to eat more food.  And I have to shoot up tonight.

I remember what AW said to me at one point:  “You will have good days, and you will have bad days.  And you just have to accept that somedays the best you can do is to lie in bed and cry.”  We’ll I haven’t cried yet today, though maybe that would be a satisfying release.  I think I’ll go eat some watermelon instead.  And then lie in bed.

The Compassion of Others

Today I have mouth sores. I did a quick search, and it is a little mentioned but documented side effect of the Interferon. Kind of like my mouth is raw in lots of parts.  Or like I burnt it on some really hot pizza, except not just the roof of my mouth.  Like ulcers, or gum disease or something. It hurts to eat food. I noticed it last night, and started using a mouthwash, which hasn’t helped. The interwebs say that there are some scary sounding iodine rinses, or you can just try warm salty water. Though neither work that well.  I’ll go for the salty water.

But it makes is really hard to eat. It hurts to have anything in contact with those areas. Especially hard or rough things. So when i got my sandwich today at the sandwich shop I go to nearly every day, I asked them to cut the crust off of the bread. I was bashful (if not ashamed) of having to make such a strange request. I mumbled something about having sores in my mouth, and chemotherapy. The two women who work the register know me well, and while they don’t adore me per se, I sense a fondness from them. They always remember that I don’t want a bag for my sandwich, and they love that I sometimes order one sandhich and 3 or 4 cookies (for my assistants!)  I guess I’m a regular. So they smiled, maybe not really understanding what I mumbled but not caring, and told the guys making the sandwiches what I wanted, they all laughed. Not a mean laugh, but a hearty “never a dull moment” laugh. I said “at least I made them laugh.” In the last six months I have realized how important making people laugh is to me.

On my way out of the store the man who ordered after me, but got his sandwich before me (because they didn’t have to cut the crust off!) held the door open for me. As I reached to take the door from him and walk through the threshold he said, “I hope you feel better.” I had not paid him any attention, but he heard enough to know that something was wrong. He might have heard me say “chemotherapy” or “mouth sores” or maybe he just knew of the feeling of needing the crust cut from your bread.

sandwich without crust

My sandwich shop, like my studio, is in Chelsea. Chelsea is many things, but one of them is a neighborhood of men who have survived. Men who have seen their friends and lovers die. And men who understand the toxic side effects of therapeutic drugs. It was so comforting to have that anonymous man offer me his support. To keep the door open with his hand, and offer me his words. It was comforting, but it also made me cry. I guess I’m used to crying on the street at this point

His brief comment was an act of recognition. He was saying “I know you. Know that I know you. Know that you are known and noticed for the pain and suffering you must be going through.” Obviously he didn’t say that, but that is what those words meant in that context.

I have been really honored to have friends and colleagues and mentors and peers who have come out and told me their own stories of illness. Stories I did not know before. Cancer, HIV, immunodeficiencies, epilepsy, etc. When you are publicly sick, people offer their hand.

A number of the “How to Survive Cancer” books and websites and pamphlets that I have read are big on having you *not* allow people to tell you the stories of their great aunt melba who had x or y cancer. They counsel you to say “I’m very sorry about your great aunt melba, but each case is different and I am trying to remain positive about my treatment and outcomes.” They are especially aggressive about that if great aunt melba died.

While I have had to pull that line a few times when it became clear aunt melba was dead or dying, the vast majority of times people have told me about their own health struggles it has been comforting.  It is like being welcomed into a world of other people like me that was existing in front of me, I just wasn’t able to or allowed to see it.  It is comforting to know that there are other friends of mine out there who are surviving their own battles with their own physical challenges.  It is comforting to know that I am not alone.

This post is for BB, HW, AW, BH, JW, SD, JC, CQ, EM, VT, LP, JG, KW, MH, IV, FG

Life will be better in 11 months

O mentioned that she was imagining what my life was going to be like in 11 months when the drug treatment has become so routine, and then is over.

i think my life is going to feel so awesome and easy in 11 months

like:
i wont have to shoot up
i’ll have lots of energy
i will have made it through
i will have an appetite
i will eat anything i want
i wont have to take anymore anti depressants and anti anxiety drugs (which make it so I can’t orgasm)
i will be able to have all the orgasms i want
i will want to eat more than watermelon, smoothies and watermelon.  oh and frozen pizzas
oh, life will be better in 11 months
I hope.
PS I just addd the “hope” tag

I feel the sleepy undertow again

It is kind of amazing to feel the side effects of the Interferon coming on again.  Whereas before they were confusing, surprising, chaotic and alarming, now they are like the return of an old friend.

This morning I had my first “I don’t feel like eating anything in the whole world” feeling.

This evening I felt the sleepy undertow.  I lied down around 6pm, and felt like I could just go to sleep.  I felt like it was going to be so hard just to get myself up.  I had a friend coming for a walk at 630, so I forced myself to get up.

So all my old friends are back.  Fevers, Loss of Appetite, and Exhaustion.  Side effects make constant companions.

I will fight them, though.  I will fight them with water, food, exercise and meditation.

I sound rediculous, right?  I’m just reminding myself.  I guess I don’t really care what I sound like b/c I know it will work.

Chemo report day 2

It is wednesday at 1pm.  I leave for my third chemo treatment in an hour.  I feel like total shit.

Yesterday seemed like it was going well.  I woke up feeling okay.  Not 100%, but kind of like I had a hangover.  I felt pretty okay going in to chemo.

While I was there I met a man named Bob who had finished the full Interferon sequence two months previous.  He was in just to get IV fluids.  He was still experiencing fatigue.  He offered to answer questions. I asked him if it got better or worse, and he said that after the four weeks of high dose it pretty much stays the same.  The first week is the worst. The fever and chills get better, but the fatigue builds through week four and doesn’t go away.  I asked him if he had been able to go to work, and he paused for a bit, and said kinda: 3 to 4 days a week, for 5 hours a day.  He said that by 2pm you are just done.  Not physically tired, just done.

He remarked at how young I was.  He was the next youngest, and he was mbe 50.  Everyone else was in their 70s and above. The place was full, and loud.  I was happy that I could meditate through it the way I did.

He also asked if I had a history of clinical depression.  I told him that I didn’t, but that I had been put on prophylactic antidepressants by my Psychiatrist.  He asked which, and I told him Lexapro.  He noded, and said that is what he was on, and that it helped.  Everyone asks about the depression factor.  It must be serious.

Other than Bob, chemo was uneventful.  We left and got home on time.  I ate earlier than the day before.  That helped a lot.  I started to get a headache, as expected, but it wasn’t as bad as the day before.  The headache built, but never peaked like it did the first day.  My friend C came over, and we had a nice time hanging out.  I haven’t seen him since Thanksgiving.

I felt so much better.  I started to think this whole thing would be a piece of cake.  right…

I curled up in bed and didn’t fall asleep.  All night.  I was restless, and nervous. I was afraid to take an Ambien on top of the Klonopin, so I didn’t.  And so I didn’t sleep.  As the night grew on and on, I tried music.  I got up and then tried to go back to bed a second time.  I even tried masturbating, b/c sometimes that release lets me sleep: I couldn’t even come b/c my left hand has the IV in it and it hurt too much to hold myself.

And plus, by that time I was getting cold.  I didn’t really realize it happening, but I got cold.  Really cold.  By the time I realized it, I had the chills.  I put on an extra blanket.  But was still shivering. My dad came in at 630 to get me to take my next set of tylenol, but i was already wide awake.  He seemed hurt that i hadn’t wakened him to put more blankets on me, but I didn’t even realize how cold I was.  He went back to bed, and I put two more blankets on my bed.   Six total, I think.  Mbe seven.  Still cold, though slowly warming.

When my mom came in around 8pm with the dogs I finally was warm.  I held one of the dogs for a moment, before she ran downstairs to go out for the morning pee.  Then I finally fell asleep for two hrs.

I woke with a start at 10.  Confused about where I was and what time it was.  I knew I had to be somewhere, but couldn’t remember where and when.  After jumping out of bed, I remembered I had physical therapy at 11.

Today I really am scared of the chemo.  I was full of energy the last two days.  Today I need to get my energy up.  I feel like hell.  Like the worst kind of hangover.  No sleep.

Time to rest for the remaining 40 minutes before I have to go.

ADENDUM:

I leave in 5 minutes.  I took a shower, changed my clothes, and pretended I was getting dressed for a sporting competition.  A soccer match.  Or a ski race.  It worked.  I’m amped up.  I know I’m weak underneath, but I’m pumped on the surface.  Ready for this.  Ready right now.  Tired, but ready.

Time to go.