sadness

I haven't written for a while.  I've been feeling well physically, but have been very sad and scared.  And angry.  I'm angry that I'll never be cured, angry that cancer will kill me and angry that my life has been shortened.  I'm having a hard time.  Before you say it, yes I see a therapist and yes I belong to a support group.  But they don't change the facts.  I often wake up crying, sometimes I can still get up and live the day, sometimes I can't.

The Space Between Us

This is one of my most recent collages.  I'm exploring this theme of what rests between two people.  It's made from some 1950's and 1960's gift catalogs and the bathing beauty is 1940's period.

Scan Results

Just a quick post that both my bone scan and CT scan results were stable.  I wasn't too worried, really, because I had been feeling good.  Ned and I took our first trip last week out of town since my surgery and radiation.  Just before the scans.  We went down to LA.  Spent 2 days in Venice beach and 2 in Silver lake where we lived for a year.  a great trip,  we rented beach bikes, went to galleries, saw friends, shopped and walked the  Venice canal, where ducks rule.  
It felt so good to get out of my cancer life, I can't wait for my next trip.  I've been a bit down since we've gotten home.  It's been rainy and cold.  I've been trying to exercise to improve my mood.  Made it to my gym for the time since maybe July.  I'm proud of myself.  I'll try to go again soon.  I still need some kind of mood enhancer.  

Scanner darkly

http://www.flickr.com/photos/arenamontanus/ / CC BY 2.0
After rescheduling several times, I had my two scans today-- a bone scan and a CT Scan with contrast.  I get them every 3-4 months to monitor my disease.  Let me be honest with you, dear readers, they totally suck!  Today is the first time I scheduled them both on the same day and I think I will keep this my standard.  The bone scan is done by the nuclear medicine department - (scary, right) something they get from nuclear reactors is injected into my arm.  Then we have to wait 3 hours and then we scan.  The scan itself takes 20-30 minutes.  The worst one is the CT Scan with contrast.  First you have to drink a few liters of a barium milkshake and then when you're naked except for the gown on the table, they inject some kind of blue dye into your arm.  Except that for whatever reason, the CT techs can NEVER hit a vein.  3, 4 even a record 6 misses once left me sobbing on the table.  What I learned to do is to go see my IV nurse before and get a pick put in.  Problem solved.  Except today the bone scan nurse was supposed to leave in a pick when she did my injection and oops she forgot.  I had to go directly to my CT appointment and per usual the CT techs couldn't do it.  My veins were "rolling" or "jumping away" they complained.  I started crying out of the pain of the needles and frustration.  Finally after 4th failed attempt they got a nurse to come in.  She had to calm me down and get the pick in.  I'm exhausted and feeling pretty nuclear reactive.  Wasn't the Hulk created by exposure to radiation?  I might like that.

Cocoa Beach Party

I've been working and reworking this piece all through my radiation. I'm not happy with it but have to call it done for now. My question is, can the viewer -- that's all my lovely readers-- feel that? What does it make you think of and what are you most curious about in the collage?

Keep on Keeping on

A Deep Exhale blog reader asked me what I tell myself when I’m down or discouraged. I try to maintain hope. To paraphrase Martin Luther King – hope is the vitality that keeps life moving and gives you the courage to go on in spite of it all. This seems so true to me.

I also really love the small moments of being alive, being present, whether I spend hours watching Matchmaker Millionaire, reading or wandering through fleamarkets. I love being with my husband and our kitties. Since I got sick I noticed the fresh air tastes amazing, like a perfectly ripe fruit or peppermint tea.

Plus, crying all the time only seems to increase the burden of being seriously ill—although I’ve done my share. I try to recover and find the vitality. I tell myself over and over that I am healthy, vital and strong.

The Great Peel

This week ended with me feeling completely exhausted. I’m feeling much better than last week and every day I can do a bit more. My skin is now more sunburned pink than crimson and the great peel seems half way through.

But my mind is scattered and tired. Yesterday I withdrew from an MBA program I started on my last day of radiation. One of my dear friends who I went to law school with questioned my sanity for enrolling. All I can say is it seemed like a good idea at the time. But between my uncompleted accounting assignments and the painful team building exercises, I knew I had to put on the brakes. As you can imagine, as I was recovering B-school homework was the very last thing I wanted to do—right next to my taxes and a dental scraping. The school is one of those new “green” mba’s – people, planet, profits – but in practice it was hard to give a shit whether Wal-Mart uses energy efficient bulbs or how the carbon cap and trade market will work. The students were so enthused and I could hardly fake it. True to my overachieving self, I simultaneously signed up for some classes at City College. In art history, studio art classes and I’m debating a writing one. I really want to stay in bed for another week. I was supposed to have my scheduled scans this week—about every three months I need a bone scan and a CT scan. Yes, they’re as horrible as they sound. I can’t sugar coat it. But I so desperately need a breather from the hospital, I’ve put them off for another 2 weeks. Hopefully my sweet hubby and I can take a trip.

Yoon and the mysterious hula mug

My friend Yoon dropped by on her way back to NY. We had pizza and scotch and tried to unravel the mysterious single white hula mug Ned received in the mail with no card. Love hanging out with Yoon.

Everyone's reading Deep Exhale

After a painful and tiring week, I am feeling better. My skin has moved into a new phase I call "the Great Peel" which is an icky wet peel of the skin. It's itchy, but not keyed up nerve endings pulling at my pain receptors. I haven't hit the balance in the last few days. There's a fine line with fatigue when you're ill. Sometimes exercise is the best counter -- a good walk in the Pacifica Forest with Vanessa it leaves you feeling refreshed, or, it leaves you dog tired and puffy eyed. I often feel bone tired. But it's been a sweet relief not to go to the hospital for a few days. I have some crappy tests I need to take-- a CT Scan and a Bone Scan. I have to take them every 3 months. But I just cant face them this week. I'm too worn out for 2 injection scans. And more importantly I just don't have it together mentally if there are results I have to deal with and strategize. I need to drink at least 3 tall glasses of water before I get into bed tonight. Thanks to my kiki for warming up the keyboard for me.

Pain pills

I've been in bed the last few days, following my burn nurse's advice to take pain pills. I feel a little better today. I went down for a follow up with the nurse. She promised me that this was the worst of it and I would start to turn around- after a peel that I'm not looking forward to. I've been so tired, I've been dragging myself around the house. The pain pills help to keep you from moving around too much. At one point, I was lying on my back, hands on my belly and I couldn't move a muscle. Not out of pain, but from the sedation. I imagine that's the state junkies are furiously searching for. You don't sleep, and the craziest thoughts and scenarios flip through your mind. These painkillers actually leave me manic when they fade - astronaut wives, schools of fish, book sales, dance contests, backgammon games, brilliant ideas that evaporate with the breath.

Burnin' up for your love

Ouch. This isn't me, but it is about the color of my chest and arm. And unfortunately, my radiation onc. wasn't joking when he said it would get worse for another week or so before it gets better. My skin hurts more than it has so far, and worse is the ickiness of skin breakdown -- it gets mushy. I panicked on Sunday and tried to get a doctor on the phone. That's when you know you're really on your own. I was transferred around a circle until someone finally paged the radiation onc. on call, who I have no relationship with. The genius told me to go to the emergency room. I laughed and said I wasn't going unless I had a high fever and to please give me suggestions on what to do. I followed none of them. I hope I at least took him away from Avatar for 5 minutes. I so often wish healthcare was delivered as it is on TV. TV is the reason people are satisfied with their care. Until they get sick. It's Monday, I have a call in today to the burn nurse. I have to limit my movement because my nerve endings are amped up. every soft brush of fabric or cushion-y pad starts those endings shimmying. I spent hours in bed yesterday watching the Mary Tyler Moore Show on Hulu, instead of reading accounting. No regrets.

Owl and Turtle Cupcakes

Yummy chocolate cream owls and buttery turtles celebrating the end of my 25 day treatment and my nephew Rex's first birthday today. I've decided to continue writing about my treatment of this disease. The blog has given me an outlet to vent and to explain. I hope there's a few folks out there in the wide world who are enjoying following it. I look forward to a few day of quiet piece. Reading, working on my collages and getting things back to their proper places. When I'm under pressure, all sense of organization escapes me. A bientot!

Day 25 of 25 a deep exhale

It's taken me a few days to take a breath and update day 25, my last day of radiation treatment. I had a 730 AM appointment, It was quiet at the facility at that time. I gave up on the IPod-- returning to my reliable counting in french. I got to 130. I had my exit meeting with the doctor and nurse. My skin is breaking down, starting at the armpit. I wont go into detail, but trust me it's icky. My skin is redder than I could have imagined - a true beet red. And so sore, I am layering padding over myself after cream and then fitting on layers of shirts to keep things in place. I got this certificate - which is sweet, but I never doubted my determination to make it through. I am a tough mother fucker. After treatment and binding myself I raced to class-- almost 8 (that's eight) hours of accounting. I left an hour early, I was too itchy. Ned picked me up (a doll) I recharged and then went to a Feldenkrais class. I know, insane, but wait! then the next morning I had 8 hours of new age-y effective leadership and team building. It all felt like a laugh-- so absurd, I'll describe it in more detail another time. I've been taking notes to write about it. Finally, I collapsed at home. I was in a manic push, that faded away with a cold breeze. Leaving me feeling achy and sore and worst with a migraine. I wish I could feel the relief that its over, but it's not. Aside from the weeks of side effects, my fight continues. I have a bone scan on Friday and a CT scan next Monday. Not even a week off. But I do feel relieved that there will be no more zapping on hard table by futuristic machines.

Day 24 of 25 Almost there!

These are my celebratory chocolate covered strawberries my mom sent me, we've tried some this evening. It's a good thing tomorrow is my last day, I don't think my skin could take any more. The ladies waiting room at the facility has been so crowded that they've run out of seats at certain times. Making the experience all the more intense. Women packed together want to talk. I did have a conversation with a grandmother about to start avastin for her brain tumor. I told her my experiences with the drug. I am really crispy fried on my chest -- and my back from laser exit wounds which I didn't even notice until this weekend. I met with Dr. P, my radiation oncologist and the wound nurse for a strategy to stave off the worst of my skin "breaking down" as they call it. There is 2-4 more weeks of yuckiness to deal with. I've also decided to keep going with the blog since my battle continues on. I will be relieved to stop going to the facility every day. It's been like Groundhog Day, slogging to the facility every morning --My job seems to only be a patient. Tomorrow is a looong day-- radiation at 730 am, accounting 9am-5pm and, incredibly, a feldenkrais class at 630. I don't really think I can do all this, but that's the schedule. I'm not sure I can sit in a class for so long, I'm very uncomfortable from the burns and I wont realistically be able to keep reapplying creams every 2-4 hours. The rolling thunderstorms wont make things any easier. Still, I'm glad to have made it through this. Berry glad.

Day 23 of 25

The end of the treatment is in sight, although radiation is cumulative, so it continues to build up in the body -- side effects worsen and peak about 2 weeks after treatment is complete. I'm pretty crispy fried today, and cant wait for this to end. I need a vacation! So tired, I'm getting into bed with a book and an ambien. It's challenging to sleep while your wrapped in vasiline soaked gauze and abdominal pads. But I can do it. A Bientot.

Invitation to Comment on this Blog

OK I think I figured out how to set this so anyone can comment on my posts. I can't seem to figure out how to reveal the comments so you can read them without having to click on 'em. Technology can be frustrating, so I give up for now.

Day 21 of 25

It's been a rough day. I felt emotionally fragile and didn't handle external stress well. I had my radiation and then my infusion at another facility in the afternoon. My skin is itchy and uncomfortable no matter what I do. And I am just plain tired of going to the hospital. This is another great image of me, thanks to my Radiation Onc. A cross section -- the two half moons are my lungs with the diagram of my laser entrance and exit points. I plan on coming home tomorrow after treatment and getting back into bed. I went to my support group meeting tonight. I rarely go, but thought i needed it. And I did. A fantastic group of women. Fuck this cancer shit. I am going to keep fighting like hell.

Day 20 of 25

I was slightly disappointed to find out that Monday is MLK day and the facility will be closed. That makes my last treatment day next Thursday, the same day I start an all day program. This means I'll have to get treated at 7ish, go home get ready for my first day of class and all the social anxiety that brings and then get to market street. Class is from 9 to 515. Yes. Otherwise I went back to an older cancer centric visualisation recording for treatment, which leaves me in a daze when they pull me off the slab. My energy is pretty good though, only my skin is bothering me. My Radiation Oncologist says I look pretty good, no nasty effects that can happen. Basically your skin starts to break down. Yuck I cant imagine what that looks like. Tomorrow is an intense day, I have morning radiation and afternoon infusion at oncology of Irradia. If you don't know what an infusion is -- and I didn't before this, it's an IV. Some people put in ports for easy access. I refused and so they have to hit a vein every time. Not as easy as you might think. I've been told mine jump out of the way of the needle. Can that be possible? The chemo nurses are a sweet bunch of people who have taken very good care of me for the past year and a half. Although I have my favorite. He never misses. I hope he's there tomorrow. I usually take a few atavan to sleep through the whole experience, but the stuff looses its efficacy. So tomorrow, maybe a dvd on the laptop.

Standing image of me

The red points are the laser entrance points. It's slightly nauseating to look at for me.

Is this really me?

My Radiation Oncologist was nice enough to let me have some images from my treatment. This is a computer generated recreation of my body based on a CT SCAN. The green lines are the laser points where radiation is aimed. You can see my lungs sticking out of my torso. Pretty incredible. As I said to my Radiation Onc, it would be cooler if it wasn't me. But it is me. And seeing this image actually made me feel a little better about the treatment. Like they might actually know what their doing and their not just blasting me with radiation. Thanks Dr. P.

Day 19 of 25 - Day 18 skipped

I'm back after skipping my update yesterday (Monday). I was just too exhausted to put any thoughts together. After treatment yesterday I bought an electric blanket and got under it and that's about it. I'm feeling better today, fatigue wise. This cold weather puts a damper on my walks. My skin is getting redder and redder and itchier and itchier. I've been alternating through a variety of products-- trumeel (the holistic one), eucerin-- a creamy soother, aqaphor -- sticky, gooey petroleum product and spring wind burn cream -- from my acupuncturist-- a smelly, red cream that stains anything it touches. I also need to get benedryl pills for the itch today. I do have some amazing pix to post from my Radiation Oncologist. I'll try to do tonight, I've been a bit lazy. I'm off to my acupuncture and then my Oncologist this afternoon. Infusion on Thursday. I am going to be super tired this week. Blah. But the end of treatment is in sight-- next week. Although I'll be crispy fried by then. Tried listening to the positive affirmations today, hard to block everything out.

Day 17 of 25 - a tardy update

I've let the entire weekend go by without writing about my Friday treatment. I've been going nonstop, which has felt great and kept me from having a little pity party. Treatment itself was the usual, except I went into the Sequoia room instead of the Tahoe one. A new set of RTs. I missed mine. I hope the switch is temporary. I again listened to guided imagery. In the afternoon I met with a UCSF doc for opinions on my treatment and then had a fun dinner at Vanessa and Josh's to welcome Moshe back from Greece. Vanessa and I hit the Vintage Paper Fair on Saturday like a cyclone. Got many amazing things. Later an art opening. Then Sunday, all day at a seminar for Sustainable MBA program. I can't believe I made it through and had a great weekend. Maybe I'll post some of the paper treasures I found tomorrow. They are super cool. Baseball cards from the teens, postcards from the 40's, 1950's Mademoiselles, a very strange Milton Bradley game called Bradley's Eskimo Village from 1920. My skin is very red and needing lots of attention.

Day 16 of 25 - Armor of Battle

Feeling very tired and cranky. My treatment area is becoming very uncomfortable, part of it feels like a burn, part like a large bruise. My doctor told me this was "normal" and to take advil as well as treating the burn area. I had acupuncture today, which made me feel better. I was cranky at the facility and just wanted to get out as fast as possible. I wore my Ipod, but it didn't distract me enough. I was feeling the gravity of the situation, the weight of the armor of battle. It's really too much to process, I have to focus on my breath and try to only have clear space in my spinning mind. I've double booked myself for several things over the next week and can't seem to prioritize. After acupuncture I supprisingly had enough energy to make dinner. I have a hard time sleeping through the night now, so i take a little ambien. I thought it would be stronger, i don't see the big deal. Unless I need an elephant size dose because of all my meds.

Day 15 of 25

Ten sessions left. Today I tried to wear my Ipod again during treatment. Listening to a Belleruth Napersak's guided imagery. I turned it up real loud and laid down on the table. The RT's take it away from me, placing it somewhere I can reach over my head. Well I cant move at all anyway so if it were in reach it would still be untouchable. Imagining a special place I recalled a hill filled with tall cattails and sunflowers with a path that i used to take. It cut down behind our house on Davenport Avenue to a more populous part of the neighborhood when I was 5 or 6. I added a clearing with trim, warm grass to sit. I imagine the warm sunbeams penetrating my body, as the radiation waves do. After I met with my radiation oncologist. He kindly put together a series of images they're using to treat me and emailed me with them. They are pretty impressive.

Day 14 of 25

Definitely feeling the fatigue these last few days. The facility was buzzing today. Inside the ladies waiting room there were 5 of us, a full house. Two women were excited as it was there last day! Very jealous. We all discussed hair loss from chemo. Some handled it well, others fucked up. If they tell you your hair is going to fall out, it is going to fall out and no shampoo is going to save it. You must shave your head before the deluge, otherwise your hair coming out in clumps is too traumatic. Trust me on this. My radiation oncologist popped in to tell me we could email me copies of my x-rays for all you wonderful readers-- he's still waiting to find out if I can film my treatment. My gut says I'll be denied, but it will be revealed tomorrow. My RTs gave me good recommendations on going to Las Vegas. I couldn't find my Ipod this am-- I'm misplacing things all the time right now. It's stress-- my years of therapy tell me that. I'm going to go on a forced march around the neighborhood for some fresh air. Although I just want to close my eyes. Too tired to figure out online registration for my MBA program I start in 2 weeks-- not a great sign for future academic success.

Day 13 of 25

Lucky number 13. Today I had radiation and the dentist. I would say the dentist was worse since I hadn't been for 3 years. Plus during chemo you can't floss at all-- so that was almost a year of no flossing. Ugh. The facility was quiet today, first day back from the holiday I guess. I was taken into the Tahoe Room as soon as I changed into my gown. Today I tried to do treatment with my Ipod on. I was listening to a wellness guided imagery recording. Since I'm held entirely by the machine during treatment, I put the buds in, and the RT puts the Ipod on the machine where I can't reach it. So the settings are, well, set. I didn't put it loud enough to hear the soft voice of Belleruth Napersak (seriously) over the high pitched mechanical humming. I'll try again tomorrow. I am really feeling tired today, and I look beat. I may take a sleeping pill tonight, to ensure sleeping through the night. I still love my japanese nail art! Seriously, run, don't walk to get it.

Alameda Flea Market

Vanessa and I hit the Alameda Flea Market this Sunday and barely fit our acquisitions into the Prius. We were on a major shopping high, with all the lovely 1950's and 60's objects. I bought 2 early 60's cattail lamps, a 1940's folding cart, some 50's magazines for collage. Nessa bought two bookshelves, a cool 60's green speckled lamp, and little treasures for her film making. If I had rented a truck I would have kept buying! Ned has asked that I curb my big item collecting. Maybe I can, maybe I can't.

Alameda Flea Market

Cool Japanese Nails

As part of my reward program to myself for making it this far in radiation, I got a very fancy Japanese style manicure in Japantown called Calgel. I love, love love it. They simply will not chip. Nail art is my new favorite thing. This is a modern take on a french manicure. I moved tons of furniture yesterday at the Alameda Flea Market- see next post and these babies didn't chip!

Day 12 of 25

My friend Yoon set me a lovely gift for the holidays. A piece of yarn from Laos. She wished me many wonderful things while a monk prayed and tied it around her wrist. Thank you for this. It's very special. The jade earrings from Vietnam are pretty sassy too. Today was my last radiation of 2009. I'm off until Monday. The Dr. order X-rays today, I didn't quite understand why. Something about making sure they were avoiding my lung. I really felt worn out by three o'clock today. I'll be surprised if I make it to midnight. But I'm happy to enter into the '10s. I have many ideas and projects I'm looking forward too. I even start some MBA classes on the 20th. Maybe I'll meet Yoon in Vietnam in February. Many things to look forward too, I remind myself. Happy New Year to all.

Day 11 of 25

Around a third of the way through my treatment-- although I know the worst of the side effects is not coming on for another week. Fatigue, itchy, peely skin, sore throat. I've been feeling really strong and energized during the day, but worn out by dinner time. Ned took me to treatment today. Very sweet -- even when I offered to take myself-- it doesn't impair your coordination. I met with my radiation oncologist after treatment today-- We talked about how it was going to get much worse before it gets better, but there is an end date-- about 3 weeks after treatment I should be back to myself physically. I asked if I could film my treatment and the group presentation of the facility next week-- for the blog. He said he would check with his manager. My guess is I will be allow to document my treatment and not the tour. But who knows? Collected my Christmas present from my hubby today-- an IPhone! I am blinded by science - fiction. This is a lame update, but I'm feeling pretty beat. I'll try to add to it tomorrow.

Pacifica Bobcat

Day 10 of 25

Vanessa was sweet enough to take me to treatment today. She is a special guest on the blog. It was interesting to read someone else's perspective on my small, secretive world of treatment. The facility is in such a quiet part of South San Francisco, you feel like you're sneaking up to the building. Today was x-ray day, to ensure my body is lining up the same as the original plan for treatment. The LINAC machine does it all. It turns clockwise until the x-ray arm is to my left. Then it turns counter clockwise and administers my radiation. Probably because I was with Vanessa and she's such a creative inspiration, I was thinking about interesting ways to document the treatment. It's so hard to describe. Should I film it with my own camera? Would they let me set one up in the Tahoe Room? What am i willing to publicly expose? Whether or not anyone reads the blog. I have my weekly appointment with my Radiation Oncologist, so I can ask for permission then. If I think I'll really do it. After treatment, Vanessa and I had a lovely lunch of yellow split pees and squash. Then we went for a peaceful walk on a Pacifica trail. The sky was an opaque grey and the forest - mossy and wet. we saw in this order, deer, a small, grey bunny and a beautiful bobcat. He was sitting in a field, observing. He seemed magical.

Day 9 of 25

Back to treatment after the long Xmas weekend. My hubby Ned took me this morning and here's a pix of him in the outer waiting room. By the time I returned to the room, it was packed with family and friends listening to their Ipods and flipping through old Us Weeklys. They have a coffee and water machine. Very classy for this HMO. I appreciate it. I suppose this facility has a kick-ass office manager who decorates and tries to keep the place calm. It even had a small "Zen Garden" accessible from the outer waiting room. Although I've never seen anyone sitting in it. The inner ladies waiting room was pretty crowded and a few women were bonding and exchanging contact information. One woman had mistakenly arrived an hour and a half early for treatment, ugh. I felt for her. All the staff stocking were still hung in the halls-- filled with candy I was told. I was thinking today about wearing my Ipod through the positioning and zapping. For all of this my arms are secured up over my head and I hold onto a soft donut to keep them there. I continued to try to count to 100 in french during the treatment -- but the creepy hi tech noises the LINAC makes make me lose my place. I need a new mental exercise to relax me. Any suggestions?

Art Therapy

I've been obsessed with the ancient Egyptians and their ideas of death and burial. I have been working with the imagery in collage. Here's one piece 11x14.