Tag: learning

A Letter to K

A letter to K, who was upset with me about my visit last November, but hadn’t said anything about it to me since.

jesus, k.

i’m sorry. i had no idea. i’m sorry.

i’m really caught off guard by this. stunned. totally reeling, from the content, from the tone. trying hard not try cry.

your friendship means so much to me, that it hurts both that i hurt you, and also that you didn’t tell me. these are small things that have built up into serious anger. I don’t even know what ‘startlogic’ is?

and also, i felt so grateful for your patience with me. which makes it all the more painful to realize you were angry at me for it. i was a lot more tired and sick than i thought i would be by the time i got to LA last November. each month provides new difficulties, and that was the month I spent rolling around on the ground, ripping my clothes off to try to cool off on the concrete. I got back, got a name for it (dysesthesia), and a drug for it, which then killed my libido entirely, and dulled the dysesthesia so that I can leave the house without being afraid of a seizure like episode.

i hate not being able to be completely independent. i hate the fact that my fingers have so many lesions on them that I can’t do my own dishes, and it hurts too much to put gloves on and take them off, that I have to save up dishes for a ‘gloving’. i hate that i have no appetite, which makes me crash, which makes me cry. i hate that i have lost my libido, and what that has meant for my relationship O, someone i really care about, who rationally understands it is chemical, but who feels rejected nonetheless. i hate that i have lost half of my hair. and i hate that i have to ask people for their seat on the subway or i won’t make it through the ride, and i more than anything i hate being told to fuck off by my fellow subway riders. my vision is going (i’m seeing double a lot, for a while i was hallucinating), my memory left a long time ago (vis-a-vis startlogic), i am starting to experience real chemical depression, (as per all the prognoses of the drug treatment.)

yesterday was the one year mark from my diagnosis. there is no question this has been the hardest year of my life. the cruel irony is that it is something i have to endure myself (it is a very lonely affair, and only people who have been *really* sick get it) and yet, am completely dependent on everyone around me, for things i can’t do, for thinks i would normally be able to do, for understanding.

i have an intern who has been working with me for two months. she is dedicated, works remotely half of the time, and is doing a great job translating the  book into Spanish. Today I realized I never told her about the cancer. It was a really awkward moment. I guess i thought that I was going to tell her, or that I already told her, or something. I don’t like to tell people immediately, both b/c of pride, trust, and a desire for them to realize that I am normal. or rather really trying hard to pretend like everything is normal. but when i told her, all of a sudden she realized why I kept coming in late, and somedays couldn’t even make it in at all. why I was getting my schedule all confused. And why i have so many drugs on my studio desk.

i’m trying so hard to act like i am normal, but i’m not. i’m on a “highly toxic” treatment. it is so hard to look normal from the outside, and be falling apart on the inside and the edges. and i’m not just talking about the way the drugs fuck with my emotions, and the ensuing chemical depression, but having my body fall apart from the inside. i have so many holes in my tongue i can’t eat anything without pain. i have a permanent gash in the back of my mouth near my jaw. when i eat, i leave bloodstains on my napkin at the edges of my mouth. half of the time i can’t wear in-ear earphones because the lesions in my ears keep getting re-infected. My eyes flake off scales of skin.

but i’m trying so hard to act like i am normal. maybe too hard

i’m really scared about this coming trip. maybe that is why i am reacting so emotionally to this. after the last travel, i cancelled all travel excepting this trip to CAA. i’ve turned down speaking gigs in berlin, croatia, argentina, los angeles, university of iowa, etc. b/c traveling is so hard. traveling is hard just getting to and from my studio and my apartment.

i had lunch with an artist friend last week. i knew he had been sick a few years back, but i didn’t know what. something thyroid related. turns out he had thyroid cancer. while they were removing the thyroid they found it had spread to all the lymph nodes in his neck — out those came. it was so comforting to meet someone who had been dealing with all of these things. I have found people here and there who had been diagnosed, but usually at such an early stage that it was just one minor surgery. It was nice to talk to someone who had something more advanced, like myself, but who is living his life.  His condition requires a little bit more maintenance than mine will be at three years out, as I did not have any organs removed, but he gets it.

He was *really inspirational* for me to try to chill out, he has basically stopped traveling, or speaking publicly, keeps his studio in his apartment, and doesn’t go out for social events. And despite all of that, his career is soaring.  he helped me think about trying to not pretend like i am normal. to sleep in all day because that is what my body needs. to say no to things. more often. and to rest. because it is my life on the line.

I’m sorry if this is a lot. A big response. i don’t want you angry at me. i don’t want you to hold a grudge against me for something i either don’t remember, or couldn’t control.

i want to stay with you because i want to spend time with you. i want you to meet O. i could stay at my aunts, or cousins, or CHP has even offered her couch. but i don’t get to see you very often, and these days, with travel so much harder for me, i see you even less.

if there is anything specific i can do to avoid impinging on you more than a normal visit would, please let me know. can i order groceries from a Fresh Direct style delivery service? I’ll take you out for dinner every night. i’ll rent a car, if you think that would help. i will bring lots of cliff bars.

http://www.pinkdot.com/
http://www.paradiseo.com/

???

I love you dearly K, and I don’t want you upset with me,

m

Dysesthesia, or knowing the words

I went to the dermatologist, who called the flaking on my eyes Eczema.  He called the lesions on my genitals something else (I forget).  He gave me a cream for both.  And told me to take Zyrtec for my itching.

And he gave me a name for my pins and needles: Dysesthesia.  He said that he has seen it in IFN cases. And he also mentioned some drug that may be useful in treating it.  But then backed off, and said I should ask my Oncologist, because it was out of his purview.  I forgot the name of the drug.

It feels really good to have a name for this mysterious side effect.  And a wikipedia page.  That helps too.

EPIC Craigslist FAIL

So I posted that message to Craigslist, trying to find a home for the extra IFN in my injection pens.  I had he best of intentions, but boy was I not thinking.  Here are a couple of the 10 responses:

From Laurence:

Hi,  Your heart is in the right place,  but the infection risk of someone else using your partially used pens is HUGE!!!!!!  Please take the ad down ASAP before some less informed actually takes you up on your generous offer.  I would hate to flag you,  no medications to be listed as per craigslist rules, I will trust you to do the right thing.  I work in healthcare and an fully aware of the cost of this stuff.  Please don’t put someone else at risk.  Great idea,  but there has to be another way to help folks.  Lobbying in albany or DC or contact local politicians to force Govt to  further subsidize these meds would be a great start.  Best of luck to you.  Happy thanksgiving!

From Gerthvan

I don’t need the interferon, but I think you are terrific.  Have you asked your doctor if there is a patient that might could benefit?  All the best to you!  Happy Healing and Happy Thanksgiving.  You are a good soul.

From Gigzilla

Hello,
I admire your generosity, but if this stuff is in a syringe (self injection pen??)  it would not be wise for more than one person to use it. If I am mistaken please forgive me. I am sure you mean well.       G-47

From Anthony

Very, very nice and thoughtful.
Hope you get better and Happy Thanksgiving.
Anthony

So of course the Hep-C patients would be well versed in the nuances of sharing needles, sterility of needles, etc.  And me, the silly Melanoma patient is clueless.

I freaked out when I realized this.  I had a total pins and needles attack. So fucked up the thought that my attempt to help someone could make them worse.  Fuck, what a mind trip.

Back when I found out I would be injecting my dear friend KM was all excited to teach me how to hit a vein (no he’s not a nurse, no he doesn’t hit veins anymore) but was dissapointed when he found out that all I had to do was jab it in and press the plunger.  The things that IV drug users know that come in handy.

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.

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

Self Injection Day 1: I learned how to shoot up!

The calm surrounding restarting the drugs evaporated about two hours before I had to head up there.  I started getting headachey and overheated.  I tried everything to make it go away (eating, drinking, pain killer.) it wouldn’t go away b/c it was psychosomatic.  This was happening a bit in PDX. My Dr there explained to me that it was a very well documented phenomenon that chemo/interferon patients get psychosomatic symptoms *before* they go to actually get the drug.  So chemo patients will start puking in the morning before they go to the hospital for chemo.  In my case, I got headaches, feverish and even more tired in the hour before I was going to leave for infusion.

My appointment was for 5pm.  I got there 15mins early.  But when I arrived at the office, it was like an episode from the twilight zone.  All the receptionists were different, they didn’t know the nurse practitioner I was there to see, they didn’t my Dr’s Physician’s Assistant, and they didn’t even know my doctors phone number. Apparently this office is used by different doctors each day.  Rather than have one set of receptionists and assistants, each doctor has their own set of receptionists and assistants.  I guess they just sit in a cubicle the rest of the time answering calls and scheduling appointments.

So I call up to the receptionist who is in her cubicle, and she says that she will page the nurse and send her down.  15 minutes later I call back, but it is 5:02 and the call goes straight to the message system.  The twilight zone receptionist leaves.  Doctors leave with their bags. You can see where this is going.  Knocking on doors I found someone who knew what I was talking about and who i was looking for.  He made some calls, and actually spoke to her: there was an emergency in the chemo clinic, but she would be down as soon as she could get there.  

About an hour passed.  I was starting to get more psychosomatically symptomatic.  Plus I was getting tired and hungry.  Right when I was really ready to walk out the door I decided to try the open-the-book-when-waiting-for-the-bus technique.  Right when you give up on the bus coming quickly, sit down and open up your book to read, the bus inevitably shows up before you finish the first page.  Its like Law of Nature.  So I announce that to S, who doesn’t quite get me, and I go turn on one of the computers in the waiting room.  They have two public computers to keep people from getting too bored.  And sure enough, right as the first little windows flag shows up in the boot cycle, the door opens and the nurse walks in.

After all that waiting, the injection was really easy.  I’m glad I got instruction, b/c I would have screwed some things up.  I would have pushed the needle in too far.  And not done it at the correct angle.  As is, I didn’t really do it at the right angle.

Pushing the needle in is painless.  As in, I couldn’t actually feel the needle enter my skin.  It was weird that way.  Injecting the IFN stung a bit.  I had to do it slowly.  I did the first half, then I did the rest.

After I did the injection I had this 5 minute spurt of energy, optimism, and other kinds of good feelings.  It was partly b/c it was over, and it was soooo much easier than I thought it would be.  But it was also probably partly chemical. I’m sure there were a lot of endorphins, or adrenaline or whatever that my brain pumped out when my brain groked that i *really* was about to stick a needle in me.  It was so weird to be looking down and think “I’m going to stick this needle into my stomach…”  and then to do exactly that.

Train ride sucked, but not that bad.  I got the headaches for real right as we turned the corner to the apt.  I got some chills, but not that bad.  I should transition to a mild fever shortly.  But overall, not so bad.  Not as bad as restarting.  Which is interesting because I am at the same dose that I was at for the second two weeks of IV, I just take it 3 times per week, rather than 5 times.  I guess the body doesn’t absorb as much when the IFN isn’t mainlined into the vein.

Verdict: Ice Vest Rules!

The ice vest totally worked.  I feel better than I have felt since I returned to NYC, even though I had a full day.

I wore it for 3 hrs running errands in the morning and in in to the studio.  Refroze the ice packs (though I don’t think they fully froze b/c they were stacked on top of each other…). Then I wore it to meet BH for lemonade, ride the subway to chinatown, get a massage, and then eat dinner.  After about 4 hours, all the umph was gone from the packs, so I took it off for the last ride home.

Frankly, I think everyone who gets overheated should be wearing one of these during the summer here.

Yay!

Day 17: Hi Fives from the Naturopath

I was talking with my naturopath today, and right after he told me how well he thought I was doing, he reminded me how difficult what I have been through was.  reiterating that no one knows how hard it has been but me; not him (who had cancer at 31), not my mother, who has had to watch, etc.

A year ago my ex girlfriend went from kinda-sad to severely-clinically-depressed overnight.  I’ll skip the dramatic in-the-middle-of-the-night catalyst event, as that was too big and messy for this analogy.  The point is I didn’t get it.  I didn’t understand what she was going through.  I had never been clinically depressed.  I did not know her experience.

The breaking point with my ex was when she called me in the middle of the afternoon when I was at the studio, demanding (there really isn’t any other word) that I come home and make her some chicken.

This i understand now: when you are sick, and have no appetite, and all of the sudden you want something, that thing becomes the most important thing in the world.

This I understand now: when you are sick, and you cannot get something for yourself you feel helpless,  When that illness is psychological, you feel doubly helpless.  When someone does not attend to you, you feel triply bad.

The argument unfolded without these two kernels of knowledge that my cancer has given me.  The highly condensed version of argument went something like this:

me: Can’t you just order some chicken from the place on the corner.
her: If you can’t come take care of me, I will find someone or go somewhere where people will take care of me.
me: (silence) (sigh) okay, I need you to do one thing
her: (some shouting about how she is sick, and she can’t do anything)
me: Take the chicken out of the freezer.

Then I took off on my bike, leaving my assistants at the studio.  That bike ride was the one where I intentionally hit the guy in the suit on the Brooklyn Bridge.  This is the only time I’ve intentionally hit a pedestrian.  He was in the bike lane, walking towards me.  He looked up at me, made eye contact, then went back to using his Blackberry.  It all happened at the threshold of conscious decisions: I took two hard pulls on my pedals, and subtly dropped my right shoulder and clocked him.   Hard.  I heard his blackberry smack to the deck and skittered off in a freefall into the East River (Its okay, the company probably paid for it.)  I didn’t look back to see if he was on the ground.  I wasn’t.  And I had chicken to cook.

The bridge shouldering is both one of my favorite stories to tell, and one of the lowest things I have done.  Funny that.

But the real point of this whole story is the the other thing I understand now that I did not then:  no one person can take care of someone who is sick.  It is just not possible.  It is too much work.  It is too emotionally tiring.  It takes a team.  It takes a family, and I mean that in the biggest sense of the word.