Tag: other people’s stories

I’m clear at two years, but my aunt died last night

I am officially clear at two years. I found out this past week. This morning I found out that my aunt passed away last night after four years fighting lung cancer. I was deeply relieved last week and deeply saddened today. And I will not be able to be at the funeral on Wednesday.

My full set of scans finally came back two weeks ago, and I just met with my oncologist.

He finally gave me some numbers: he has been unwilling to commit to numbers b/c they have so little data on my staging group. He said that the rate of reccurrance was anywhere from 15-30 pct during the first two years. (That range has changed several times, as it is a fairly broad range, and they don’t really have a handle on it.) More importantly, at two years, it now drops to 10% and after five years it drops to 5%.

10% is a nice number.

He said the scans looked really good. Which means very stable. nothing new. Everything has been consistent for two years. In particular he had been concerned about the nodules in my lungs which were ostensibly scars from my childhood pneumonia. He is now convinced that they are totally completely benign, as they have not changed *at all* in two years.  This is good.

I had a pretty rough time leading up to these kind-of high pressure scans. Scheduling the scans was an ordeal insurance-wise (they were reschedule once, and were almost cancelled the day of b/c the insurance papers had not come through.)

Then the New York Times published two articles on melanoma that appeared the night of my 2 year cancerversary. I had the scans done at that point, but had no results. They totally fucking freaked me out.

http://www.nytimes.com/2010/02/23/health/research/23trial.html?pagewanted=1&hp
http://www.nytimes.com/2010/02/24/health/research/24trial.html?pagewanted=3&em

I was a wreck after i read the first one. and then the second one only made things worse. I was actually already on edge, as I waited for the results from my 2 year mark scans.

So I was already on edge, and then this article comes out talking about patients diagnosed with the same type of cancer as me, but who were diagnosed at extremely late stages, when they were more-or-less given weeks or a few months to live. A very few of them respond to this miracle drug, but after 6 months, they all relapse, and a large percentage die. Talk about fucking heartbreaking. I was doing my absolute best not to cry while reading the article. In retrospect, maybe I should have cried; maybe it would have released some tension? Who knows.

But I didn’t relapse. This is the major milestone. It is the first real number-changing mark. My numbers now go down from the vague 20 to 40 percent, to a solid 10 percent. Three more years, and I get to 5%. From what I understand, I will never get under that 5% — the percentages in a given year are very low now (whereas they were quite high in the first two years, especially in the months 12-18), but if you add that up over the rest of my life, it adds up. But it is a mark, and now I only have to see my doctors and get my scans at 6 month intervals, not 3 month intervals.

straight talk from the dr – and its good

departure for portland is creeping up fast! i’m going to portland at the end of the month and staying through mid august. after friday, i only have six more weeks of injections. my drs are all v positive. they seem really genuinely happy when my scans come back negative – as if they really thought there could be something on them. my oncologist doesn’t want to talk numbers, and always gives me the crazy ranges like 5 to 35 percent. i asked my derm to give it to me in plain language, and pull no punches, and he basically said that if i was going to relapse, it would have already happened. he says that he has two kinds of melanoma patients: the 60 year olds, who usually relapse w’in the first year, and the 30 year olds, who all survive w/o relapsing.

He told me the story of a guy who came in 5 years earlier w/ a massive melanoma on the back of his head — so close to his major lymph nodes. Apparently it had been bleeding for 6 months, and he finally came in to the dr. It was advanced stage III – in lots of lymph nodes. He had surgery and did the interferon, and 5 years later, is perfectly fine.

a friend’s bad news

I wrote this at the end of August, but didn’t feel it was appropriate to post it then.  Then I forgot about it in my draft folder.  The good news is that everything checked out fine, and there was no Cancer.  (I spoil the ending, I know…)

B came up to me today and asked to talk.  she seemed really distressed.  strangely the kind of distressed i usually associate with someone about to tell me that they are really mad at me.  i was really confused.  we went over to where the chairs are at eyebeam, and sat down.  i asked her if she was okay, and she said “no” with real conviction.  she paused, and said that  she went to the doctor for a mamogram, and then she paused.  stunned.  i just reached out and held her hand.

they found calcifications (nodes) in her breast.  apparently they are concerned about them.  that some patterns are worse than others.  I don’t know much about the histology and prognoses of breast cancer.  i only know about melanoma, and each are so different.  but what i do know is what it feels like to be told you need to have a biopsy.  i told her the things i wished i had known at that moment.  and i did it with a calm and collectedness that surprised me.

i told her that until they confirm that it is malignant, she needs to remain calm, and not go down that road mentally.  i told her that percentages and odds of outcomes are irrelevant: i was supposed to be in the 85%, but I ended up in the 15% (with metastisis).  i told her that she could come and cry at any time and i would hold her.  and i told her that she shouldn’t keep it bottled up: i waited way too long to tell people, pretending that it was not a big deal.  but the fact is, it is a big deal from day one of discovery.  emotionally, and physically.  i told her to figure out what she can ask for help with, and ask for it: from her parents, from her friends.  and i told her what SL told me the first day: she needed to learn how to meditate.

and i told her the story of when i was 17 and they found big nodes in my lungs on a routine physical.  they had to do a biopsy.  i thought i was going to have cancer and die.  but it turned out that it was just scar tissue from a childhood pneumonia or something.

until you get confirmation that something bad is going on, you have to be optimistic and remain mentally strong.  so much of it is a mental struggle.

I didn’t write it at the time, but the other thing I was how I was becoming The Cancer Expert, and people were coming to me to talk about their histories, and their current scares.

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

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.

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.

Too True, Too True

O is sick.  She writes:

I’m not really hungry but i haven’t eaten and want the comfort of
comfort food (sound familiar?) so i’m going to call the diner for
delivery and then just stare at it when it arrives.

it’s a mystery to me what this is. my sore throat is super mild, it’s
just headache, body aches, and total fatigue. i think i might also
have a low-grade fever. i’d say that i really hope you don’t catch
this, except that i know these symptoms already define your every
day….

sad but true.  and well put

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.

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