Tag: back to daily life

From my Mom

Mom read the last post and sent this:

just wanted you to know
yeah, I read the blog
and yeah, I’ll always be your mom

you just ran a triatholon
a full one
with no training

you are going to be ok
yes, you need to re adjust your expectations of normal

the new normal, remember

YOU ARE GOING TO BE OK

and yes, you are jet lagged as well
and yes, you are coming off big time drugs

remember  Jr year in college?

I love you
always
mom

Just for background, Junior year in college I was addicted to caffeine and worked myself to exhaustion, and spent a week in the hospital. It was pretty bad. I had to go home for a month to recover after I was let out of the hospital. I couldn’t even fly for a week or so after I got out, I was so wrecked. Anyway… I guess that is perfect segue.

Last night I had a pretty solid freak out about feeling overwhelmed. I was watching Stephen Colber w/ O and I got a jarring phone call about logistics from one of my assistants. The news wasn’t really that bad, it just foregrounded the extent to which I was kind of all over the place.  And then I panicked and really freaked out. I started thinking about all the things I need to do. All the places I’m supposed to be. And like Jennings’ post, I felt like everything was moving past me so fast, and I could not hold on to anything.

O and I talked about it a bit. I explained all the things I was supposed to be doing the next day.  And she told me that I shouldn’t. And I protested. Even though I knew she was right. I just couldn’t see how I could just say no.  Or not do things. In this case, it was a conflict between my weekly pyschologist appointment, and a five hour long meeting at the studio that I found out about two days earlier. I rearranged my whole schedule around it, but then realized I created a conflict w/ my psychologist. I tried to call and cancel yesterday day, but got a busy signal both times. I should have known it was a sign that I shouldn’t cancel…

O wrote an email for me, backing out of the meeting at the studio. It was almost impossible for me to send the email. O had to write and send it. I am so afraid of backing out of responsibilities. No one wrote me back to reprimand me. No one wrote me back at all. Maybe they expressed their anger at me privately. Or maybe they weren’t angry at all. Maybe I am just afraid of their anger… I came for the last hour of the meeting. Everything had gone fine without me. I contributed some in the last hour. My presence was helpful, but not essential. My absence did not derail the whole process. It was kind of amazing to me. And I don’t mean that in some self-centered way. I mean that I just feel so obligated to do what is asked of me, that I find it almost impossible to say no.

So it was a good lesson, I suppose.

I am trying really hard to learn from it.

I have said no twice today. I sent them to other people for help. It was good. And each case, the person wrote me back to say that it had worked out.

a bad case of the four o’clocks

I definitely think that something is up w/ my chemistry. I don’t know if it is because I am still jet lagged, or because today is day two of reduced lexapro, or both, but I’m definitely having a serious case of the Four O’Clocks. I can’t really focus my eyes. I’m kind of in doldrums. I went for a bike ride to try to energize myself. I rode myself pretty hard. I’m a little numb now, but I’m still pretty damn out of it.

I’ve been working all day. Today is the first day back in the work saddle since i got back from Europe. But I keep thinking about this article O sent me about slowing down. Dana Jennings writes in his nytimes Cancer blog:

But recovery means wholeness: mind, body and spirit. And I reached a point last summer and fall when I realized that even though I was back at work, once again juking and stutter-stepping my way through the streets of Manhattan, I hadn’t recovered at all.

I thought I had weathered the trauma of diagnosis and treatment, thought I was ready to focus on the future. But my body disagreed.

Physically, I was game, but I soon realized I was going through the motions as I became more and more tired. I felt like a spinning quarter about to nod to gravity and wobble to the tabletop. Mentally, I couldn’t focus: I became shawled in the monochromes of depression. And spiritually, I wasn’t angry — I did want to know what this cancer could teach me — but just right then I couldn’t make sense of my cancer-blasted interior landscape.

I hated to admit it, but I had to excuse myself from the day-in and the day-out if I wanted to fully heal, if I wanted to recover.

I was running too fast O sent it for me to slow down. I feel like I have to work harder to clear my plate so I can then rest.  But it doesn’t work that way does it…

Month 3 was lackluster… onto Month 4

I just finally went back to teaching. Taught my first class last week. I realized I was really worked up about it. I had been 20 months since I had taught. Long time! i totally procrastinated my lesson plan, and improvised it all day. It was a full day of classes. When I came home I went and rode four laps around the park. I had all this energy. It was like I was waiting for that moment to come and pass, and until then I was stuck.

I’m three months out of the Interferon treatment. I had a bad third month, largely b/c I got the dreaded H1N1, but having cleared that, I’m doing pretty damn well. Today I rode to the studio and back. And I am *seriously* considering riding in on weds for a department meeting. I was having bad heat related dysesthesia, but it seems to be easing. Though i am out in fall weather riding with a t-shirt and the lightest shorts i have, and everyone else is all bundled up in pre-winter gear.

O wanted to give me a surprise gift for my first day back at school. She went through the usual choices (flowers, chocolates, cards, etc) and decided none of them were… well… enough of a… splash! So she came up with this idea for a surprise. She had worked it all out with my department secretary, my office mate who knew my schedule, etc. Then she ran it by PD and GY and a couple of other people, and they started to give her silent responses, or hesitation, and or flat out “um, no that is not a good idea” responses. So she got cold feet, and canceled.

I found this out the night before I went to teach. She decided to tell me what was *not* going to happen. She kind of figured that I would like the story of what *would* have happened as much as like the experience itself. I think she was right.

What would have happened is that sometime after the second break in my 9am class a singing telegram man dressed in a pink gorilla costume would come give me a box of chocolates and sing me a song about… how I like chocolate, and dogs, and riding my bike, and stuff. O had to fill out a form with things I liked, from which they created a song. The pink gorilla would sing his song, bestow the chocolates, and then leave me and my students probably a little befuddled, possible overwhelmed and in a state of panic, and most likely laughing at the gorilla, and not with the gorilla, (and hopefully, yet probably, laughing at *me*). LOL.

Marisa was quite worried it would overwhelm me, which would lead to a freak out dysesthesia attack. Or that it would completely freak my students out, on what was effectively my first day with them, though it is halfway through the semester. I think she was right on both counts.

So instead, at about the same time the pink gorilla was to show up, I told my students the whole story. As a story they found it absolutely hilarious. They were pretty blank faced the whole day, not laughing at any of my jokes. Not really even reacting to anything I said to try to get a reaction out of them. Pretty blank. But this got a rousing laugh. So in the end, it was a major success, as a story, and not a real event.

Four Weeks Out: I’ve been too well to want to write

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.

One week out

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.

EPIC bowl fail

EPIC bowl fail

I broke one of my bowls b/c I was using rubber gloves to wash my dishes. I found one for sale on ebay for $100, and posted that image. I was going to buy it, but then I noticed one for $40. It looked identical. I bought that one instead. It arrived, and it was… miniature. I guess you get what you pay for. And again, with this damn broken bowl business, I remained calm, didn’t cry, didn’t get angry, didn’t let it break me. I kept my sense of humor. But I still need to get a replacement for the bigger bowl.

I Made Dinner

Mushrooms and Ravioli

I made dinner, after I got home, when I was tired. I didn’t order out. I didn’t get something from the deli counter at the fancy place near the subway. Okay, the ravioli were from the freezer, but I cooked them. And I cooked the mushrooms. And it all came out nicely.

I was feeling really low-energy when i got home, but I kept my focus, and went through the motions. And ended up with FOOD!

Amazing

A Pat on the Back, and some Goals

Things that it is important for me to remember I have overcome:

  • Mouth lesions (twice)
  • Dysesthia is better
  • I have commuting routine
  • Hand lesions are better
  • My eye lesions and eczema are stable and not too bad
  • I am making food for myself and O (the independence is huge)
  • The lesions in my nose are better, though not gone
  • My genital lesions are gone
  • I have not had any major homeless-person-style dysesthesia attack in the street since I returned to NYC
  • I am much better at regulating my body heat outside which helps the dysesthesia
  • I can go grocery shopping

Things that are happening that I am managing to get through:

  • I still have dysesthesia, though milder
  • I still have major itching on my extremeties, and my lower legs and forearms are covered in scabs
  • I still have major heat sensitivity
  • My body still aches if I don’t take Tylenol and advil every six hours
  • I have lesions in both of my ears, with painful scabs
  • My mouth is so dry and raw I am having trouble eating: last week I actually couldn’t get most food In or bite on a sandwich because of the pain, now it is just uncomfortable to do so
  • I am struggling with holding on to my libido

Things I seem to have avoided entirely:

  • I am not depressed
  • I have not lost my appetite (though I have lost much taste, and gained much weight)
  • I have remained phenomenally productive in the studio
  • I was able to finish my book

Goals:

  • I need to meditate more
  • I need to leave the studio earlier
  • I need to exercise (bike or pilates)
  • I need to be more emotionally present for O

Shattered Bowl

brokenbowl

rubberglove

My hands are so beat up with lesions and cuts, and my skin is so thin and dry, I decided to use gloves to wash the dishes. It seemed prudent and responsible.

The first dish flew out of my hands, and crashed all over the floor. It was one of the big cereal bowls from my set. The set I grew up with. I had to concentrate really hard to think "it is just an object. do not let this make you fall apart. do not cry."

This is the second time today I had to do that. I had the same feeling, and response when I cut my finger, right under the fingernail, on the edge of a cardboard box. Cardboard cuts me! That’s how thin my skin is.