JS writes
Hey!
No news (on melanarrative) is good news?
J
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.
LOL
m
Exercise reduces your risk of cancer, via the nytimes:
Parsing the men’s activity levels, the researchers determined that, after controlling for cigarette smoking, fiber and fat intake, age, and other variables, the most physically active men were the least likely to develop cancer, particularly of the gastrointestinal tract or the lung. Even more striking, the intensity of the exercise was key. The more arduous it was, the more protective it proved. Jogging was the most strenuous activity studied, fishing among the least. The men who jogged or otherwise exercised fairly intensely for at least 30 minutes a day had “a 50 percent reduction in the risk of dying prematurely from cancer,†says Sudhir Kurl, medical director of the School of Public Health and Clinical Nutrition at the University of Kuopio in Finland and one of the study’s authors.
I’ve been riding my bicycle for 30 to 60 minutes for 6 of the past 7 days
I’ve been feeling so well that I have been throwing myself into feeling well. I keep realizing I need to write a status update, but I just would rather ride my bicycle, or have sex, or make a good meal, or email a friend I haven’t seen in a while to meet up, or… All of this is good. Really good.
I’m exactly four weeks out from my last injection. To put that in drug terms, during this time I have taken Atarax less than 5 times, for a while I took less and less Klopin, I only took Tylenol when I had headaches I realized were actually Klonopin withdrawal symptoms, and thus started them back up. I’m meeting with my Oncological Psychologist today to discuss phasing out strategies for my remaining three drugs (lexapro, klonopin, and seroquel). we’ll see what he recommends. Obvs has to be done carefully.
Okay, emotional terms: I’m happier than I have been in 18 months. I feel like myself again, except better. The process of facing down my own death made me less afraid of death, failure, admitting mistakes, honesty, etc, and more willing to ask for help, be honest about emotions and needs, and better at saying no to people (as I always say yes, and always end up over extended.) I’m happy, full of energy, and a lot less of a pain in the ass.
Okay, my energy levels: I have only had two proper dysesthesia attacks, and a few tremors that I have been able to control through meditation and breathing. I get up in the morning, and can go through a whole day. All this, despite the mid August NYC heat. I’ve been riding since my return 6 days ago. Rode three of the last four nights. 2, 4, 2 laps around the 3.3m park. Feels really good. I’m hitting lactic threshold in my legs, and i’m pushing aerobic capacity, especially when i did 4 laps. it feels good to be able to feel where my body is. where i can go. and then week by week, expand that. i’m good at rehabbing, actually. i’ve done it a *lot* of times. too many times. a lot more than I should have…
It is fun to restart things in the studio. I have spent this week taking a big picture look at everything we were working on, and figuring out what needs to happen next. A lot of strategy. Big picture thinking I could *not* have done a month ago. Turns out I’m working on 101 distinct projects. Oops. About 20 of them are more than 90% done, and just need finishing touches, and at least 30 are just brainstorms i sketched out on paper and a lot of them can be straight up killed b/c the other ones are so much more worthy. But still. Way too many.
I’m riding the subway. I’m actually typing this on the subway right now. PDX got the heat wave, and NYC had a luke warm rainy summer until this week that I returned. Everyone keeps saying this is the hottest week all summer. It is supposed to chill off in a week. But it feels good to realize I can take the worst of the NYC summer, and I’m okay. I’m still wearing my ice vest for commuting, but I don’t need it anywhere near as much as I did a month ago.
My hunger is back. I’m eating more. I’m eating faster. I’m eating everything. I have had all the things I was unable or prohibited from eating: shellfish, orange juice, lemonade, mustard, rare steak. Strangely, I have not had any sushi yet, and though I had some Indian food, it kind of kicked my ass from the spice.
I have glasses now, my hair has thinned and has no curl anymore. I had to cut it really short to get rid of all the chemo hair that was brittle and frizzy. I can’t wait for my fingernails to start growing back. I can brush my teeth again, and finally shaved with a razor today, for the first time in maybe 9 or 10 months; my skin just couldn’t handle it.
All in all everything is going so much better. I’m looking forward to going back to teaching. My department chair has been really good about working out a schedule that eases me back in. I start with some advising and internships, and going to faculty meetings, and pick up the second half of two “team taught” classes mid semester. I am confident I will be able to do that, and looking forward to being back in the classroom. It has been 18 months, and will be another two more.
Unless anything drastic happens (good or bad) I will prob be writing less and less, which is a good thing.
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.
Its been a week since I started to feel better. 10 days since my last injection. The Sunday after my last injection felt like any normal Sunday, but Monday I woke up and felt amazingly better. My joints didn’t ache. I didn’t have to take Tylenol and wait for 30 minutes before I could get out of bed. And I felt like I had a lot more energy.
Unfortunately, the next four days was the second hottest heat wave on record in portland, tying the 4 days above 100 in 1981. It peaked at 107. Considering that my side effects are mostly heat triggered, it was a brutal four days. I really don’t know if I could have made it through it if it happened a week earlier. O and I retreated from the house we were staying in, to my parents house that has AC.
The daily improvement is subtle and hard to gauge. I know I’m getting better, but I also know that I am not well yet. My eyes healed first: no more flaky skin all over my eyelids. The open wound on my ankle immediately started to form a proper scab after 2 months(?) of being an oozing semi-open wound. My mouth has healed enough that I can brush my teeth with my finger, and tomorrow I am going to get a new toothbrush and try to brush them for real (I haven’t done that for 6 months!!! ICK, right?). My dysesthesia is down a little bit, but b/c i have eased off on the Atarax, and it is so hot, it is somewhat hard to tell how much better it is getting. I am much more mentally clear. My dad said it was like I came out of a fog. The heat here is hard, and it will probably be worse when I get back to NYC at least until mid september.
Last night my parents had a bunch of family friends over for dessert and drinks. It was a chance for them to see me and talk to me, and for me to thank them for supporting my parents over the last 18 months; most of them hadn’t seen me for a while: at least since I was in Portland last summer for my initial high-dose treatment.
It was Os first time meeting my parents friends. If you grow up far away from your extended family, your family friends (aka your parents friends) become like family. They have a major role in shaping who you are. They provide models for how to live your life.
So as I said, it was Os first time meeting them, and afterward she remarked how great they were. How caring. And interesting. I said that everyone who came had an open heart.
I made a toast to my Parents, O, S, PD, and all of the people who helped support my parents over this long haul. It was long, and full of honest, clear spoken, sentimental truths.
I told them about getting a flat tire two days ago in a borrowed car. Once I realized there was a problem, I panicked, then calmed myself. Before I knew it the guy who lived in the house we were stopped in front of was coming down his stairs to help. His name was Jared, he was 230, mostly muscle, and wore a National Jiu Jitsu championship t-shirt. He (with a little bit of help from me) used all his strength with his arms, a hammer, and eventually his whole weight (while I held the tire iron onto the nut) to get the nuts off. The car is a ’89 Land Cruiser, when they still were real safari vehicles, and not suburban tanks. It was a beast. it took 40 minutes to change the tire, and by the end his body was literally dripping with sweat. I profusely thanked Jared (we are going to drop off a bottle of wine and some cheese and crackers tmrw).
I told him that this would never have happened in NYC. You have a crisis: its your problem. No one else stops to help. The only space where people really seem to help each other is on the bicycle: if any cyclist is off their bike and still in the road in Prospect Park every cyclist that comes by stops to make sure you are okay. Even the meanest rider in the park, whom PD and I dubbed “The Bully” (who laughed at me when I rode around with my shirt pulled up to cool my belly) stopped when I had a dysesthesia attack on my bike. My bike was on the ground, I was clutching my ribs in a half bent position, shaking a little bit. Trying to calm myself so I could ride up the last hill and go home. He and his gang stopped to see if I was okay. I clumsily tried to explain that I was in chemo and that i get these really painful pins and needles. That it was kind of like a little seizure, but that it would pass. He said that he recently lost his father to cancer, and he expressed sympathy and understanding about how difficult the fight is. After reassuring them that I would be okay, they rode off. That is the only time a stranger has stopped to see if I was okay, or to help.
The other thing I said was something PD’s father SD said to me sometime in between my surgeries and my IFN year started. He said that he has been repeatedly told by friends who had been diagnosed that their lives took on more meaning after their diagnosis. I told SD that I had just come to a similar realization: that knowing that I could die shocked me into realizing that every moment is precious (what an awful cliche…) and that I really should be doing what I really want to do.
It is 11pm on Sunday. I turned off my alarm. This is when I would restart the weekly cycle, but obviously, I am not injecting.
Starting now, I should start to feel better. Maybe tomorrow, maybe the day after. I does not help that it is going to be over 100 degrees for the next three days.
10 people over for dinner, then desert, then my parents showed up and we raised another toast, and then more desert. Lots of happy. Lots of friends.
I’m done… I’m done. I’m done!!!
My last injection is in 21 hours.
I shouldn’t feel the side effects lift for at least 24 to 48 hours after the injection, but today felt a lot easier than the previous few weeks. I woke up feeling good, I had a kind-of-big meeting during the day (I haven’t had a meeting in weeks, if not months). Maybe I just had a good day.
But I feel how close the end is. That sounds super cliche and kind of sentimental. But I think that my mind has taken over, and knows it is going to be released from this cycle of… (think of non-cliche word for pain and suffering and fail…) …pain and suffering and it is kicking in the endorphins, or whatever, to get me through the last tiny little bit.
Tomorrow we are going to have a few people over for pizza, i’m going to do my last injection, and then we are going to pop some champagne to celebrate.
I am going to go to sleep, and wake up to the rest of my life. That sounds cliche, and maybe even ominous, but I’ve been waiting for this for 18 months now.
I rec’d a pkg from “Lady Fortunes” and while I do buy a lot of stuff online, and often forget exactly what was coming from where, most everything I’ve been buying have been art materials that have been shipped back to NYC.
So this package shows up with the return address “Lady Fortunes.” It was addressed to me, but I felt like it might have been a mistake. I waited for O to wake up, and ask her if it was hers. It seemed like tike it could be private. She denied all knowledge, but exhibited great curiosity. Ditto with my mom.
I was baffled. I had no idea what it was. We unboxed it, and it got funnier and funnier. So it is a fortune cookie that is 9 inches wide… and we are in hysterics. But there was no card in the box. So we are guessing who it is from. We suspected AW and LK, but it turns out upon opening, that it was from my Aunt and Uncle.
We were on a giggle-high from that one. So awesome.
The last week seemed to take forever.
It is crazy hot in Portland, so I’ve been having major heat related dysesthesia.
Sleeping *a lot.* Really exhausted at the end of all of this.
One more week. 7 Days, three injections.