Archive for August, 2009

On weekends I get a little treatment reprieve: no radiation and no Xeloda (oral chemo).  This weekend, by some miracle, on Saturday afternoon I was feeling fabulous. It was almost shocking. I felt better than I’ve felt for months. It didn’t make sense to me since I’d just finished my first full week of treatment, but I wasn’t arguing. I felt so good I completely reorganized my office/studio space – including moving the furniture around.

Naturally, I made the assumption that I’d feel good on Sunday, too. But it was not to be. The morning was fine, but by afternoon I started to notice I just didn’t feel that well.  I tried to ignore it, thinking it might go away. A little while later I felt something like vague nausea creep in and I had to admit I had no energy. I was also starting to experience some “interesting” pain following each trip to the bathroom.  I ended up in bed very early wondering if it was going to be a long night.

Monday mornings are also a bit of a challenge.  I have to start taking the Xeloda again with breakfast.  Usually, within a couple hours I feel mildly drugged – basically just lethargic, with no real desire to do anything, and a little foggy.  Then, just about the time my energy really plummets, I need to get out the door for my 1:15 radiation treatment.

Voodoo Doll Therapy

Voodoo Doll Therapy

Today, when I arrived for radiation, I asked the techs, “Which one of you wise guys got out your voodoo doll on Sunday and started sticking needles in my butt?”  They each firmly denied it was them, but one of them apparently felt guilty enough to get me a prescription for some suppositories that are supposed to help “calm the area.”

Then, strangely enough, I started to feel better this evening – just about the time I was scheduled to pop another handful of Xeloda.  So, at this point I simply cannot figure out any pattern to the ups and downs.  There doesn’t seem to be any rhyme or reason as to when I’m going to feel fine or when I’m going to feel – uh – shitty.  It seems all I can really do it just ride the wave.  When I feel okay I try to take advantage of it and do something enjoyable.  And, when I feel punk, I just have to surrender and let it run its course.

And wait for whoever’s in charge of the voodoo doll to decide to stop poking pins in me.

P.S.  Thank you, Dad!

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One day not long ago, while I was off somewhere dealing with having cancer, my sweetie Tim left a message on my voice mail.  It was simply him reading Rumi’s poem The Guest House into the phone.  I was moved to tears when I heard his voice and the words of this beautiful poem.  Now, a day doesn’t go by that I don’t listen to that voice mail.

                        The Guest House

This being human is a guest house.
Every morning a new arrival.

A joy, a depression, a meanness,
some momentary awareness comes
as an unexpected visitor.

Welcome and entertain them all!
Even if they are a crowd of sorrows,
who violently sweep your house
empty of its furniture,
still, treat each guest honorably.
He may be clearing you out
for some new delight.

The dark thought, the shame, the malice,
meet them at the door laughing and invite them in.

Be grateful for whatever comes,
because each has been sent
as a guide from beyond.

                               — Rumi, 13th century mystic
                                    translation by Coleman Barks

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I’ve had six radiation treatments so far, out of a total of thirty.  The daily process is really very quick and painless (it’s those side effects that won’t be so painless over time).  Driving to the Cancer Center, changing into a gown, and get positioned perfectly on the table takes much more time than the actual treatment.  Most days I’m in and out of there in about ten minutes – fifteen if I stop to have a conversation with Lucille whose radiation appointment is right after mine.

When I walk into the radiation room, there are two monitors on one wall that have my name and some data on them.  One also has a photograph of my naked pelvis on the screen (with a big box drawn with a Sharpie on my abdomen, reminding me of a meat cut diagram). I was a little taken aback the first time I saw it and warned them that “I better not see that photo ending up on Facebook…”

Meat Cut Diagram

Meat Cut Diagram

The radiation techs have the table set up for me with a headrest, sheet, and my personal leg mold ready for me to climb onto.  Once I’m lying down with my arms folded up on my chest (out of range of the radiation) and my legs in the mold (causing my hips and pelvis to be in the same position each time), they begin to make small adjustments to my torso so that the laser beams line up exactly with my three tattoos.  There’s one on my abdomen, just below the bikini line, and one on each hip.  The machine is programmed to send radiation to a very specific place and they want to be certain the exact same area gets treated each time, so getting me into position is critical to the overall process.

The tattoos are just small green dots, so they’re not really noticeable. Since they are permanent (and I’ve managed to avoid tattoos for 48 years), I’m glad they’re not obvious. They actually tend to get lost among all the moles I have – to the point that the radiation folks like to pull out that Sharpie and draw various circles and boxes on me to indicate where a tattoo is! At any given time I’ve got a whole bunch of designs drawn on me.

Once they’re satisfied that I’m set up properly, they leave the room.  A large avocado green machine with a big square window directed at me starts out just above my abdomen and makes a buzzing sound for about six seconds as it sends the radiation. Then it rotates around below the table to send a blast from underneath me. Next it rotates to my right side and does its six second buzz before rotating over to my left to get the final side.

The techs come back in and help me out of mold and off the table. I get dressed and I’m done. As simple as it all sounds, it’s still a little eerie to experience. I can’t actually feel anything as it’s happening, but there is a psychological component to wrestle with each time I hear the machine do its buzz. A few hours later I usually have a bout of fatigue for a while.  I’m also beginning to have increasingly more diarrhea, which they’ve predicted will only worsen over time, so I’ll have to start carrying Imodium around with me when I’m not at home!

That’s the process every day at 1:15, except for Wednesdays when I’m in the Chemo Infusion room most of the day and the radiation folks simple come get me whenever they have an opening to squeeze me into.  I wheel my pole with the chemo drip on it down the hall to the radiation room and get on the table while I’m hooked up to the chemo.  Since I can be in my street clothes for chemo treatments, the radiation techs generally just let me take my jeans and panties off and I get on the table without a gown on those days.  They’ve seen me enough times by now that it’s no big deal anymore.

After today’s treatment, I’m being whisked off to have tea with one of my dear yoga instructors.  Every small treat takes on more meaning these days.  And I so appreciate all the ways my friends and family are offering their support.  Thank you all.

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I’ve been wanting to do something different with my hair for a while anyway.

I was surprised when my doctors first told me that the particular chemotherapy drugs I’m on don’t have the common side effect of total hair loss (although they did say it may “thin” a bit).  I’d already prepared myself for losing it, and had begun daydreaming about getting a really short spiky haircut (à la Sharon Stone?) before it was gone.  I knew I wasn’t brave enough to do something that radical under normal circumstances, so this seemed like the time to try it since there’d be no lasting consequences!

I think I even had a touch of disappointment over the news that my regimen wouldn’t having the hair loss side effect.  Although those who have gone through chemo and have lost theirs have told me it’s so much more debilitating than you think it will be, so it hasn’t taken much for me to decide to be grateful instead!

The New Haircut

The New Haircut

Nonetheless, it still seems like there’s no better time to make a change.  As you can see, I didn’t opt for the super short mega change (although that’s still an option!).  Instead, my usual let’s-take-it-slow-and-make-a-small-change-first nature won out.  My Mom took this shot yesterday when I stopped by to show her.

Today is my second big chemo infusion of Oxaliplatin.  I’ll be at the Cancer Center nearly all day.

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Cliff Dwellings at Bandelier National Monument (photo credit: Sally King, National Park Service)

Cliff Dwellings at Bandelier National Monument (photo credit: Sally King, National Park Service)

Four treatments down, and only twenty-six left to go! 

So far, the only real effect I’m noticing is that I tire more easily than usual.  Last week I had just three consecutive days of radiation and chemo pills (plus the first dose of once-a-week chemo “infusion”).  I did pretty well until Friday night, when I was suddenly really tired, but I’d also had a full day of activity with Alison.  There’s a two-day break on Saturday and Sunday with no pills or radiation, but it still took most of Saturday before the fatigue lifted.  By that afternoon, though, I felt up to going out to Bandelier National Monument with Ali.  We walked the path up to the cliff dwellings and even climbed a couple of ladders to get a peek inside them.  It was probably the most exercise I’ve gotten in a few weeks!  And it was wonderfully energizing to be out in such a phenomenal natural setting.  But, as you might guess, I was pretty pooped when we got home that evening.  It gave new meaning to Sunday being a day of rest!

So, today (Monday) marked the beginning of my first full week (with five days in a row) of treatment.  I’ve been told the whole process keeps building, so the fatigue thing may start to settle in again by mid-week…but you never know.  I keep hearing from each of the doctors and nurses who see me that everyone responds differently to treatment.  They’re required to tell you all the possible side effects, but they don’t really expect you to have all of them.  And, of course, some will be less severe than others.  One thing I have going for me is that I’m basically very healthy (other than the cancer itself) and I’m physically fairly fit from both yoga and gardening, so it’s possible I may not have a terrible time of this…

Meanwhile, however it plays out, I’m just staying thankful for each day that I feel good and can do the things that make life meaningful.  Like climbing up into an ancient rock cave that was once home to someone who lived here a thousand years ago.

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Alison’s Visit

I’m enjoying a visit with my friend Alison this weekend.  She’s been with me through thick and thin for more than 22 years.  So, of course she would come check on me during these first few days of chemo and radiation treatment.  Thankfully, I’m still feeling pretty good (although I’ll admit a little fatigue has crept in already), so we’ve been able to get out and do a few things that girlfriends would normally do together!

But first I dragged her with me to a meeting with some insurance folks who’ve been working on getting me some more appropriate health coverage (that’s another topic for another day).  Then, Ali got to tag along with me to the Cancer Center for my third radiation treatment.  But afterwards, we got down to “girlfriend time” and had a nice lunch at the Tree House (all organic, local food!) and went shopping for a pair of slippers for me (no luck – I guess August just isn’t a time when people are buying slippers).  We also went to see the movie Julia & Julie, which was a perfect way for me to spend the afternoon as I was beginning to feel kind of tired from the treatment.  We ended our day at home with omelettes for dinner and veggies picked from my garden just moments before.

I seemed to need to take it slow this morning, but now I’m feeling a bit more energy so we’re off to the Farmer’s Market. I’m so grateful for every day that I feel well enough to keep doing the things I love, and for being able to spend time with the people who are dearest to me.

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I turned to the meditation for August 20th in my beloved Book of Awakening and, as often happens, found something in the entry that spoke directly to my current situation.  I smiled with recognition as I read this quote by Swami Sivananda:

The inward battle – against our mind, our wounds, and the residues of the past – is more terrible than outward battle.

Although I’ve tried hard to avoid using the term “battle” in connection with my experience with cancer (choosing instead to use words like “journey” and “adventure” and “dance” as they seem less violent to me), I think this reflection by Swami Sivananda offers me a wise perspective on the what is really at the heart of all I’m dealing with these days.  Yes, my “outward battle” is with a disease that would like nothing more than to take over this shell I call my body, but I recognize also that a very real struggle I face daily is with my inward self – mostly with my mind that wants to take control, does not like the unknown, and works tirelessly to make things fit in it’s fairly narrow box of understanding.

For now, it’s enough just to be reminded of this and to try to be gentle with myself when I find my mind taking off down a road that really isn’t helpful or healthy.  It seems to me that beating myself up and doing “battle” with my inward self is probably equally as detrimental as letting cancer cells run wild in my body.  I believe the chemo and radiation treatment will do it’s job and make my “shell” inhospitable to cancer. All I really have to do is show up for treatment and endure some unpleasant side effects.  The much harder work is continually finding ways to nudge my mind back to a healthier path when what it wants to do is stray off course every few moments.

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1st Chemo Treatment

I made it through my first long day of chemotherapy yesterday.  It actually started at home when I took my first two chemo pills after breakfast.  Even though I knew there wouldn’t be any immediate side effects, my overactive imagination kept waiting for something awful to start happening!

Before I left home, I packed a bag to take with me to the Cancer Center.  You’d think I was planning to stay for a long weekend:  a zip-lock full of prescription bottles including anti-nausea and anti-vomiting pills; an arsenal of supplements for relaxation; a bottle of water; my pink bathrobe (to cover the drafty gown for radiation therapy); my address book (ok, I admit it, I have an old-fashioned address book with everyone’s phone numbers – I like it better than my cell phone contact list); a book; a magazine; my calender; socks…”I’m sure I’m forgetting something.”

I walked into the Cancer Center at 10:30 carrying my “suitcase” of stuff and signed in.  As always, nothing happens until they take those vital signs (blood pressure: 113/78, heart rate: 80, temp: 98.4, weight: 130 – up 2 lbs!).  Then I had a short consultation with Dr. Fekrazad.  He was excited to tell me that he’d “presented my case” that morning to their weekly gathering of oncologists and surgeons at St. Vincent’s Hospital.  They had reviewed my file in detail and everyone agreed on my treatment.  The only question was whether, in hindsight, I should have been advised to have the transrectal ultrasound before the surgical biopsy (the ultrasound might have given them more information before surgery).  But one doctor in the group pointed out exactly what I would have said if I had been there, which is that we didn’t know it was cancer when I had the first surgery.  We were hoping it was just a benign tumor.  So, yes the ultrasound might have been a nice idea, but it wasn’t necessarily an obvious choice then.  In any event, the treatment is the same.  And it was kind of nice to know a whole gang of doctors agreed on that.

I finally made it into the treatment room.  A nurse removed the bandage covering the incision for the port.  Then she numbed the port with a spray (which feels like frostbite) after which she “accessed the port” – their euphemism for sticking a needle in it.  When she was happy that it was working properly, she attached a bag of anti-nausea medication and benadryl to the drip.  A half-hour later, she replaced that with a bag of calcium.  A half-hour later, a bag of magnesium.  Finally, around 1:30, she hooked up the actual chemo to the drip.

That bag took two hours.  Afterward, there was another bag of calcium (1/2 hour) and another bag of magnesium (1/2 hour).  Before it’s all done, they flush the port with saline a few times and then give me a “heparin lock” to keep the port from getting clotted with blood.  All together it’s about 4.5 hours of drip time plus another half hour of miscellaneous stuff. 

Apparently this will be the routine every Wednesday (plus, from now on, I’ll come in an hour earlier for blood work each week).  The treatment room has comfortable recliners and a TV/DVD at each station.  A volunteer brings juice and snacks and blankets around.  While I was there today, Dr. Fekrazad checked on me at least three times, Dr. Han (radiology oncologist) came in to see me, the center’s social worker Marla stopped by twice with information, and a woman from the hospital pharmacy who is helping me get the Xeloda pills for little or nothing through various foundations and “medicine banks” came in to introduce herself.  Everyone asked how I was doing and wanted me to be sure to call them if I needed anything.  I already felt like I was getting individual and caring treatment here, but today really reinforced that for me.  The whole experience was about as comfortable as one could hope.

As for side effects, the only one I can report so far is that my mind is still running rampant waiting for some side effects!  I’ve been told I might experience some tingling and numbness in my fingers and toes, so with every microscopic twinge I think:  is that a side effect?  And, of course I’m to expect some nausea, so after lunch and a snack when I felt a little full, I kept wondering:  is that nausea?  is that a side effect I’m feeling?  After five hours of sitting in a recliner, I was naturally feeling drowsy.  But instead: am I feeling fatigued? is that a side effect?  This “worry-machine” called my mind was in high gear all day.  But, so far, that’s the only side effect I’m aware of.

Postscript:  A huge thank you to Mary Anne for sitting with me the entire day watching the various bags of medicine drip slowly into my port.  Since visitors don’t get the cushy recliners like patients, she endured it all in a regular chair.  So, despite the fact that I don’t like this photo one bit, she took it and I’m posting it as a “thank you.”  (It better not end up elsewhere!)

No longer a "chemo virgin"

No longer a "chemo virgin"

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My actual treatment begins in earnest today.  Here’s the regimen (for now at least – there’s always the possibility of having it change it as we go along):

  • I’ll go to the St. Vincent’s Cancer Center five days a week (it’s only about 15 minutes from my house so that’s handy). 
  • I’ll have radiation therapy every time I go.
  • On the days I go in for radiation, I’ll also take chemotherapy in the form of a pill (Capecitabine, a/k/a Xeloda:  two in the morning and three in the evening).
  • Once a week, I’ll also have a chemotherapy infusion (Oxaliplatin, a/k/a Eloxatin) given through the port they just put in on Monday.

The whole regimen lasts for about six weeks. Radiation treatments are quick, taking only about 15 minutes – most of which is simply getting me and the machine set up in exactly the same configuration each time. There are four blasts of radiation, one from above my pelvis, one from each side, and one from below. The machine makes a circle around me as I lie still on the table. It takes less than five minutes to do all four sides.

The chemo infusion takes longer.  Today, which will be my first time, may take up to four hours as they’ll run the drip very slowly.  They’ll speed up the process a little each week, but it will probably take about two hours even at the quickest rate.

As I’ve been sitting here writing this, the time has arrived to take the first two Xeloda pills. Yesterday, when I picked up the pills, the pharmacist spoke to me about some of the side effects I could expect.  He also warned me not to let any pregnant friends touch the pills!  Apparently the chemo can actually be absorbed from the pills right through your skin.  Since chemo works by killing any fast growing cells, you don’t want a pregnant (or nursing) woman to handle them.

So, just now, as I was about to take the first two, I opened the bottle and thought: I don’t even want to touch these things much less put them in my mouth!  But, I did.  I’m sitting here now half expecting to need to run to the toilet to vomit any moment.  I know it’s not likely to happen quite that fast, but my mind is running rampant with all kinds of weird scenarios.  I only took the pills about eight minutes ago and I swear I can already feel something awful coursing through my veins…

So, in a while, I’ll head over to the Cancer Center to have more varieties of poison injected and blasted into me.  I’m also taking some reading material with me on the subject of expecting miracles to happen.

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I made it through the port placement, but no part of it was fun.  I couldn’t get comfortable enough to sleep well last night, and this morning it feels like someone slugged me hard in the tender area between my right collar bone and shoulder.  There’s a dressing over the incision, but I can see that the area all around it is becoming black and blue.  Raising my right arm too much pulls on the bandage, so I’m moving about like I have a broken wing to protect.

Yesterday was one of the few times when, no matter what I tried, I just could not get myself to calm down.  No amount of breathing exercises, prayers or visualizations seemed to help.  Each of the health care workers I met offered reassurances that everything would be fine, but the anxiety just kept building as we went along.  When they put me on the table in the procedure room and began covering me up with that blue surgical paper – including tenting my head so I couldn’t see anything – I really started to panic.

They were aiming for “conscious sedation” so they kept me alert right up until the doctor was about to make the incision.  The nurse gave me something in my IV to relax me, but I was still crying and trembling when they began cutting.  I heard her say, “I’m giving you some more medication” and I finally became drowsy enough to not care about the pressure and tugging going on at the right side of my chest.  I heard the doctor say, “we’re halfway through,” and I remember thinking, “please hurry.”  I was becoming more alert again as the nurse was stitching up the incision.  I could hear her making the quiet sounds of slight frustration as she sewed, but finally I heard her mutter, “There!”

Tasya was waiting for me with a smile when they wheeled me back to the recovery room.  Half an hour later, I was dressed and walking out of the hospital holding onto her arm.  (It’s pretty shocking how fast they’ll discharge you if you can convincingly say, “Really, I’m fine.”)  We stopped at Backstreet Bistro to get my favorite Hungarian Mushroom Soup to take home.  The man behind the counter, whom I’ve seen many times before, looked at me and asked if I was alright.  I’d managed to get passed the recovery nurse, but my post-procedure zombie look wasn’t fooling the guy at the restaurant.

I climbed into bed right after the last spoonful of soup.  The right side of my chest felt very heavy.  I slept for quite a while, but awoke feeling pretty sorry for myself and had a good cry.  I think it’s finally dawning on me that this tube in my chest is really just the beginning of a long, challenging road.

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