My Second Cancerversary

Today is my second Cancerversary.

I went to my Dermatologist for my check up, and I was cleared.

I am still waiting for the results from last Thursday’s scans, so I am not celebrating yet, but this is a big milestone… in the making. I made my next Dermatologist appointment, and had the pleasure of scheduling it for six months from now, a three month extension to the routine from the last two years.

I am very very hopeful, but not celebrating yet. I learned the hard way about counting chickens before they hatch. I will count them when the report comes in. I will also finish my mixed metaphor then as well.

Approaching two years

I just returned from the College Art Association conference. It was at this confetence two years ago that I got my first indication that I had cancer. My dermatologist’s office called me wanting me to come in to the office as soon as I possibly could to discuss the growth removed the previous week. I’m not stupid. I knew what it meant.

Despite this, I was able to give my panel presentation. Functional denial is an incredibly powerful force.

Last year I was deep in the middle of the worst of the side effects. I was barely able to travel. And I was staying with K with whom things were strained and tensions high because of how bad shape I was in the last time I visited. I skipped nearly the whole conference, only showing up to moderate my panel. And i took cabs to and from, despite the fact that where i was staying was on the same subway line as the conference. I remember walking around the LA convention center baffled and exhausted — trying to find the room where we were supposed to speak.

This year was starkly different. I was only in for two days of the four day conference but I went to many panels and was actively engaged in the conversation. My presentation was full of energy. And I really felt good.

I’m ten days from my official cancerversary of February 22nd. But in a way the conference is a premonition of my milestone, much like the first phone call during the conference was a harbinger of the turmoil and illness to follow.

I get my two-year scans on the 18th and I meet with my dermatologist on the 22nd exactly two years from when I was in his office and he broke the bad news to me. Two years is a really significant point in the timeline. My understanding  is that most melanoma reoccurs at around 18 months. That is where the graph peaks. And it dips pretty agressively around 24 months. The curve never drops to zero, so the calculus means the area under the curve ends up adding up when you factor in a lifetime along the x-axis, but it is as close as it is going to get.

I am mostly excited and relieved, but a small part of me is waiting to exhale until after the results of the scans come back. I fully expect them to be negative, but then I was also sure that my sentinel lymph node biopsy would be negative: the odds were 85% that it would be negative and only a 15% chance that it would have made it to my lymph nodes. And yet it was there, 15% be damned.

So I’m getting ready to be hopeful, but I’m being cautious about letting my emotions move into that space yet. Even as i finish titrating off of Lexapro with my last 1/4 dose tomorrow, (leaving Klonopin as the only drug I am still on), even as I make it through this memory laden conference, I still have the scans. Then I can finish this transition and move into a new phase.

Two months out

It has been a few days past two months since my last injection. I am doing better, but by no means all better. I keep using the number 75% in conversation, but I wonder if I am being optimistic. I can do a full day in the studio, but not the whole week. And I often melt down at the end of the day.

GC had a major medical scenario involving heart surgery; emailing this week she said it took her three years to fully recover. I’m starting to realize that my initial thoughts of 6 months or so, are really radically out of line for a “full recovery.” And that the last 25% or 20% or 5% will continue to remain elusive for a long time.

I look a lot better. I got my hair cut quite short, am wearing glasses, and haven’t had to wear the ice vest for nearly a month (or at least my memory seems to think so.)

But my memory is faulty. Very faulty. There is a lot I can’t remember from this year. That was what my first blog post was about. How I had already forgotten so much. I think part of it is a coping mechanism. If I really remembered every detail and dwelled on every hard time I would never make it past the illness. But everyone around me remembers the whole thing; all the details; everything I have unconsciously blocked out as a survival tactic. This is hard when I don’t remember how bad it was, or how helpless I was, or how much help I needed, and how much others helped me. I mean I *know* this, but I don’t actually *remember* the moments.

If I think hard I can remember not being able to get out of bed without help, not being able to put on my socks or shoes, not being able to walk more than a block or two, not being able to wash the dishes because my hands were so raw, getting gloves to wash the dishes, then dropping and breaking so many bowls and plates that I had to stop even trying. My heart would jump everytime I dropped a plate (and caught it), and would fall everytime i broke one.

A lot of the physical symptoms are receding. My lesions on my legs are almost gone; they are gray and fading. My finger and toe nails are still a total mess, but they are slightly less of a mess than they were two months ago. I still can’t use them properly, but at least they are not completely shredding. My infected bug bite on my left ankle is still healing (four months later) but seems to be making progress. And my tongue can take just about anything but properly spicy food.

I still have dysesthesia, though it manifests in much less severe ways. I get it on a daily basis, but can mostly control it through concentration. It is mostly discomforting, as opposed to the debilitating effects before. Last week I was in San Francisco, and walked through the intersection where I had my lowest moment, and I felt fine. I saw all the same street corners. I pointed out to O where I huddled, where I ran around the corner, which bus stop I ended up at. And none of it set off any side effects. I think a month ago it would have. I think I *am* getting better. Just slowly

I have finally adjusted to seeing through my glasses, and the short haircut feels natural to me. The thin, soft, whispy hair is very strange, but becoming more normal all the time. My cleaning lady brought me some Doo Gro, which is a whole bunch of different plant and seed oils that are supposed to increase hair thickness. I like the smell, so I put it in my hair, but I don’t have much hope it will really work. I am accepting this as one of the permanent changes. Much like the glasses. These are the bad permanent changes. But there are also good ones.

One of the side effects that took the longest to manifest (which logically means it will take the longest to receed) are some really strange sleep talking and sleep thrashing patterns. I seem to talk a lot in my sleep, narrating my dreams. Which are alternately incoherent, and or full of livid, violent, and erotic details that are supposed to stay in my unconscious, or pre-conscious, or whatever. I apparently try to talk to O about these things, and she asks me questions, and I respond. I remember none of this. None. I am completely on autopilot/unconscious. Combine that with tossing and turning and kicking and thrashing. All told, between the talking, the things I seem to say (which are ambiguous as to whom I am talking to, and quite dark as the unconscious is wont to be), and the thrashing, I have kept O from a good night sleep. And given her bad dreams as a result. No fun.

My Psychiatrist has recommended a sleep study, which is nice, but I’m having trouble finding anywhere that takes my insurance. It seems to be a money maker of a procedure here in NYC. He also dropped a few of my medications a few mg. But the bottom line conclusion is that it is the IFN is still in my system and is working its way out. No Fun.

I went for my quarterly set of Drs appts, and I checked out fine. I get a set of scans as soon as I can make the appointment. My Oncologist said that 2 years is the most important number. At two years I get to scale back my visits and scans to twice a year, and my prognosis numbers get better. Most recurrance takes place around 18 months. He dated my start date as Feb 23rd, the date of diagnosis, so I’m at 19 months. Five more months and this becomes something I can start forgetting about (even though I already have.)

I go back to teaching in 4 weeks. I think I can handle it. I have a reduced load, though the commute is going to be hard. seven weeks is all I have to do. I can do it.

No News Is Good News

JS writes


No news (on melanarrative) is good news?


yep, no news is good news.

the only thing to report is that I did some really rough calculations, and figured out i probably took 3200 Tylenol last year, 4800 advil, and 3200 various other pills, supplements, etc. 164 injections of Inteferon. And two quarts of fish oil.

O marvels at my ability to swallow pills with no water. I guess after over 11,000 pills, you get used ot it.



Chemo Brain

O sent me this article just now from the NYTimes on Chemo Brain, which is the word doctors are using to describe the long term cognitive side effects that some chemo patients experience on a permanent/semi-permanent basis.

As more people with cancer survive and try to return to their former lives, a side effect of chemotherapy is getting more and more attention. Its name is apt, if unappealing: chemo brain.

Nearly every chemotherapy patient experiences short-term problems with memory and concentration. But about 15 percent suffer prolonged effects of what is known medically as chemotherapy-induced cognitive impairment.

I have been struggling with these symptoms all year, and they are starting to go away. I still have problems with words and names. If interrupted while telling a story or doing some multi-step talks frequently can’t remember what I was doing or saying. And today while driving, I got lost, realized I was lost, reoriented myself, and then did the same thing going the other direction, and then did it again. 3 times! I kept getting off the freeway, turning around, and going the other way.

I have an infected ankle (but it is getting better)

I had a bug bite, or something, that seemed like it was getting worse. Two days ago, I had some pain walking in the morning, and I tried to lance it that evening, but only got some watery blood… no puss.

I lanced myself, but only got blood

And yesterday morning I woke up just after 8am from a dream in which I broke my ankle. And my ankle was throbbing in pain. I felt absolutely terrible. I got up to go to the bathroom and take some tylenol/advil and i could barely walk. really. i couldn’t put any weight on the bad ankle. I was a mess. When 9am hit, O called my dermatologist for me (I have an appointment on monday anyway…) and they told me my dr wasn’t in, but to just come in and one of the doctors would see me. We ended up taking a car in for an inspection.

When I got there, the doctor looked at O and me and joked “You two sure look like you’ve had a rough night.” Later, when she realized I was on IFN, and had been for a year, she apologized profusely. I told her its good to get a reality check sometimes…

She pushed on the welt/bite, and decided that there was no pustule (which I think I had already proven the night before.) Put some topical antibiotic on it. And gave me a prescription for antibiotics. I spent all of yesterday and most of today in bed with my foot elevated. I’m just now starting to feel a little bit better. I can walk around a bit without intense pain.

getting better

I think it got so bad overnight because I injected that night. That injection caused my immune system to temporarily dip even further below its already immunosuppressed state.

Lying in bed for the last two days is all too familiar. Last spring I spent 6 weeks lying in bed while recovering from my surgeries. It was a little offputting to realize I was back in the same place. Thought I knew it was only temporary.

Likewise, me telling the dermatologist that I had been on IFN for a year made me realize that, in fact, I started my interferon June 16, so in ten days, I actually will have been on the drug for a year.

Losing things

I left my camera in Illinois. Thankfully the housekeeping found it, and the hotel clerk is sending it to me. This has been a year of losing things: 4 hats (My two favs, and then I bought 2 new ones, and lost those two). Two pair of gloves (nice bike riding gloves, really nice ones). One really really nice bike riding jacket; I dropped it on the street I think. Oh, forgetfulness

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.