Health Update for June-uary

(If you don't get the title of this post, you obviously don't live in Portland.  It's the middle of June and I wore a GoreTex jacket, shoe covers and a wool hat to commute this morning.)

Enough with the recent existential whining.  Here is the latest on the nuts and bolts cancer stuff.

First, congratulations to me for hitting my 100 day mark as a cancer survivor.  On my 33rd birthday, no less. 

Second, five chemo happy hours down, three to go.  I am now on a new drug, Taxol.  So far, Taxol has been much easier to deal with, primarily because Taxol does not cause nausea.  As I'm on the third consecutive week of being able to eat on a normal schedule, I've gained back all of the weight that I lost when I got sick six weeks ago.  All of this has conveniently reappeared in my gut region.  Hellooooo, chemo potbelly.  Hellooooo, stretchy skirts and empire waist sundresses. 

I refuse to be totally accountable for this, and almost have myself convinced that part of the weight gain is attributable to the fact that the chemo is fucking with my ability to poop on a regular basis.  This has become one of my daily cancer patient gripes.  So much so that I might have to turn this blog into "Confessions of the Bald and Chronically Constipated."  Thirty-three is entirely too young of an age to be figuring out how to incorporate prune juice and Miralax into one's daily smoothie.  But so it goes.  

Taxol's major side effect (other that fatigue) is muscle aches and joint pain.  So far, all of this has been manageable with rest, Advil, Epsom salt bathes and staying warm.  The weather, of course, is not cooperating with the latter strategy and I have taken to wearing a thick wool stocking cap and wool socks in my office to compensate.

Some of the expected side effects are becoming more pronounced.  I am officially anemic, but my blood numbers have been outstanding otherwise.  My skin is dry enough that my face now soaks up shea butter hand cream and my nails are splitting.  I also have some sort of member of the mushroom family taking up residence on my left hand.  Its not exactly the same fungus as last summer, but still....fungus.  Nasty.  So now, in addition to the wool hat and socks, I am wearing a latex glove on my left hand to keep the fungus cream on my hands and off of my keyboard.    I look and feel like a crazy person, only one step away from the guy in front of my office building that wears a sleeping bag like a cape.  

Now for the fun, unexpected side effects.  First, I am a walking, talking booger factory.  All of my nose hairs fell out, so my nose drains constantly and any debris in the air collects on the inside of my nose in solid form.  (Surprisingly, so far I still have my eyelashes and enough eyebrow to get by without an eyebrow pencil.) I have boogers that will randomly fall out of my nose when I am talking to people.  This is really sexy and not at all distracting.  But, however, not as sexy and distracting as:

The Franken-eye.

This is the name I have given my left eye.  Something about chemo has made my eyes very dry and sticky, therefore causing them to stick shut when I blink.  So please do not be alarmed if we're having a normal conversation and quite suddenly I look like Sloth from the Goonies.  Just give me a minutes to manually open my eye and pretend like nothing unusual is happening.

----

I met with a radiation oncologist last week and have that stage of my treatment tentatively scheduled.  Because I haven't had any setbacks or blood work issues, the doctor was willing to bump up my start date eleven days (July 31) and increase my daily dosage such that I will be done (D-O-N-E) with treatment the day before I leave for Cycle Oregon.  This pleases me to no end.

Re-Entry Woes.

So where have I been lately? That's a question with no easy explanation. I'll start with my weekly Free Will horoscope:

"If you have long conversations with the image in the mirror this week, I won't call you a megalomaniacal narcissist. Nor will I make fun of you if you paint 15 self-portraits, or google yourself obsessively, or fill an entire notebook with answers to the question "Who am I, anyway?" In my astrological opinion, this is an excellent time for you to pursue nosy explorations into the mysteries of your core identity. You have cosmic permission to think about yourself with an intensity you might normally devote to a charismatic idol you're infatuated with."

The mysteries of core identity. Who am I anyway?

I might not be having long conversations in the mirror, but I sure have been talking to myself a lot lately.

Figuring out who we are is often referred to as a process of "finding oneself." For me, it feels more like a process of elimination. Take all of the things I could possible be and gather them up. Some of the identities were easy to get rid of. Some of them I had to experience to realize whether they fit or not. Some of them I didn't realize existed until after experiences of extreme joy or fear.

Being diagnosed with cancer was like having my existing slate wiped almost completely clean. Which is simultaneously a blessing and a curse.

In the times BC (before cancer), I lived this frenetic, competitive, structured existence that I thought suited me to a "T". I did what I thought I was supposed to do: college, law school, got a good white-collar job. I got married (and yes, divorced), bought a place to live and incurred some good old fashioned American debt. I trained and raced and won things. Life was a whirlwind of billable hours, training rides, take-out and happy hour.

I thought I had everything I wanted. But after spending the last few months thinking about other things and doing other things, it is apparent that this pre-BC existence won't work for my in the times post-BC. The times where the simplest things are making me the happiest: cooking, sewing, reading, spending time with friends and moving my body just for the sake of moving.

Instead of being a liberating thought, this scares me to death. Since I went back to work and realized that the break has not reawakened any enthusiasm for my current career, there are frequent moments where I'm paralyzed by dead and anxiety. Thirty-three year old women should not tear up with dread at the thought of being lonely and bored in their offices. Yet, this is exactly what I did on Monday morning.

Knowing that things need to change is easy. Figuring out what to do next is terrifying. But something has to give. I know that I would be wasting my newly discovered (and precious)state of cancer enlightenment if I just went back to the status quo at the end of treatment. And the status quo will not keep me healthy in the long-run. I am sure of that.

People change careers all of the time. ALL OF THE TIME. They go back to school and start businesses and write books. They take risks despite the odds. There is nothing about who I am that makes this impossible for me. I might not feel like I have many useful skills, but I can learn to do anything...I can write a book, run a bike shop, rule the world, own the Internet...if I can get out of my own way long enough to get started

So here's the Catch-22. While cancer has given me the gift of enlightenment, is is also a big impediment to following through on change. I have to keep my health insurance and need a steady stream of income to pay for food, my mortgage and what will be a lifelong stream of doctor's bills. And my chronic bike habit...nothing about that will ever change.

I've talked about this with a couple of people this week and they both pointed out that getting physically healthy should be my first priority right now, that the lifestyle changes will work themselves out. This is true, but getting healthy means not only becoming cancer free, but getting my other ducks in a row so that I am happy, anxiety-free and, ultimately, stay cancer-free. And procrastinating and doing nothing is not exactly moving me in the right direction.

Advice...anyone?

Oh, Lance.

I bet if you own a bike, you have an opinion about Lance Armstrong.

Just in case you have nothing better to read this afternoon, here's mine.

Reading "It's Not About the Bike" after I was diagnosed was mind-blowing.  The story was a good one when I read it for the first time.  But the second time was like reading about my own life.  Other than the whole winning the Tour seven times thing. And that's just because they don't let women ride in it. 

Lance is one intense mutha-fucker.  Maybe you'd call him a jackass.  As someone know for opening her mouth at inopportune times and taking ill-advised flyers off the front to a race just to get my thirty dollars worth out of it, I get that.   

I get that the first thought that went through his mind when he received his diagnosis was that it would effect his bike racing.  I get the whole thing about being weak and poisoned and despondent.  I get the epiphanies that you get when you realize that you are being given a second chance to get your shit together and go be the person in the world that you were supposed to be all along.

I get all that.

What I don't get is what to think about Lance and doping.  Here's why.  He's a survivor.

Lance went thought something significantly more toxic than I am enduring.  The radioactive substances they pumped into his body killed his reproductive system, wasted his body and caused uncontrollable nausea.  What I am going through is much more doable, but the fact doesn't change that it is all incredibly toxic.  My body and my soul will never be the same. 

After being exposed to so much toxicity, after being stared in the faced with my own mortality, I couldn't imagine going back out into the world and exposing my body to more chemicals, more medical uncertainties, solely for the purpose of winning races.  It makes zero sense to me. 

If the hand grenades that Floyd has been launching at Lance and the cycling institution turn out to be true, I'll be honest with you.  I'll be sort of devastated.  

I used to not care about this sort of stuff.  Cheaters were cheaters and we all know about cheaters not prospering.  Or dying of heart attacks at 35 or having their balls shrink into their chests.  They all get their's in the end.

But Lance?  Lance is a survivor.  No, correction, Lance has made himself into "The Survivor."  If he also turns out to be a doper it will feel like a slap in the face to thousands of other survivors who have drawn inspiration and strength from his intensity and perseverance. 

Oh, Lance.  

----

But, all of that aside, as a cancer survivor, I cannot help but appreciate the attention he has brought to our disease and the struggles that survivors face even when we become cancer free.  So there's that. 

So I'm suspending judgment for the time being and am planning to support the efforts of the Lance Armstrong  Foundation by riding the Tour des Chutes on July 17.   Because, when it really comes down to it, there are still survivors out there, and sometimes we need all of the help we can get.

To the Left...To the Right...And Back to the Middle.

We all know that progress rarely occurs in a straight line. Instead, it undulates or peaks and plateaus before peaking again. This is definitely true in cycling and I am finding that it also holds true with dealing with this disease.  

After a few weeks of zen, I got sick, got tired and found myself falling back into old, less healthy patterns.  I judged, procrastinated, worried and skipped new practices that I know made my life better.  I didn't exercise, slacked on my writing, was needlessly unpleasant to bank employees and dropped the ball planning my own birthday party.  I let the fatigue win. 

Its a delicate balancing act--trying to get back into my normal pre-cancer routines (working, cycling, socializing), but keeping only those elements that are healthy and productive while eliminating the things about that life that weren't so great.  Forming new habits is hard...its always three steps forward, a step or two backwards. 

The self-judging has been the hardest old habit to brake.  The cycle of thinking that I should be working more or feeling stronger.  That there isn't ENOUGH to my life...am I healing enough, working enough, resting enough, eating enough good food, exercising enough, getting enough from my relationships.  Enough already.

Today's lesson: Living a balanced life is not like standing on solid ground.  More like standing on one foot, blindfolded, on a wobble board.  It doesn't come naturally--without training, conscious planning, constant adjustment and the acceptance that sometimes we lose our balance and slide off. 

So for this cancer patient, it is time to get back on the wobble board.  To plan meals ahead of time so I eat well during my bad weeks.  To lace up the shoes, put on the rain coat and walk, even when the Portland weather is doing everything it can to discourage us from going outside.  To write without worrying whether there is anything relevant or humorous within the words.  To not judge myself as weak when  the concentration necessary for three hours of lawyer work kicks my ass.  To embrace the simple and eliminate the stressful.  To remember that even when I feel strong, I need rest.  To ask for help when I need it.

Escape from Portland.

OHMYGODFUCKINGCABINFEVER.

That is the best way I can describe, using letters instead of frustrated and unintelligible noises, how Round Three has gone so far.  

Chemo was Monday this time around, due to a scheduling issue with the doctor's office.  And I woke up Monday morning with a head cold.  So I knew going in that R3 not going to be the cakewalk that R2 had been.  

The infusion itself...no problem.  As the owner of a brand new iPad, I spent the two hours geeking out on my new toy.  Some out there might say that porn is the best way to kill time on the internet.  I am not one of those people.  I am a person that spends an hour in a measurement conversion application calculating that I weigh 10.71 stones and averaged 16.7 knots at Jack Frost this year.  All very useful and important information. 

By Monday afternoon, I could feel the fatigue clamping down on me.  And it didn't let loose until Thursday afternoon.  Cold fatigue on top of chemo fatigue was not fun.  Didn't exercise, didn't cook.  Just shuffled in a bermuda triangle from the bed to the couch to the kitchen.   Slept, dazedly watched bad TV, ate burritos and tried to stay hydrated.  (One of the strange things about masking nausea with medication is that it really doesn't affect my ability to eat.  What it does affect is my fluid intake.  There is something about drinking water that made me feel more wonky than eating a heavily loaded bean and cheese burrito.  Go figure.)

I now have a serious case of cabin fever.  It started yesterday afternoon when I was driving home from acupuncture.  The treatment did wonders for clearing up my sinuses and lungs--one of the last things that I need right now is a respiratory infection.  Stuck in the construction traffic on MLK, I had an overwhelming urge to get on to I-84 and drive until the car ran out of gas.  To go anywhere with wind and fresh air and sunlight and without a incessantly beeping clothes dryer.  Something to jerk me out of falling back into bad habits of funk, procrastination and ambivalence.

A horn honked nearby and I was jerked back to reality.  The reality of my body and its need for more rest.

I gave myself another twelve hours of couch surfing, tea drinking and wedding-reality-show-watching.  But this afternoon I am headed to Astoria to spend some time with a friend, then to Pacific City to meet some teammates at the end of the Reach the Beach ride.  Time to get back into good habits--writing in my journal, finishing a book that has taken me too long to read, walking, connecting with people. Living, not waiting.

Hair We Go.

This cancer shit can never be simple, can it?

My hair started falling out over the weekend.  Whatever, totally expected.  What was not expected was creative path my hair decided to take before its curtain call.

There isn't an "easy" button for chemo hair loss.  Because that would be nice.  Press the easy button and all of it falls out at once, I rinse out the shower and that would be that.  I could then proceed along with being awesomely bald or, at least, able to wear hats and wigs without my stubble catching, pulling and hurting my suddenly sensitive head. 

Of course, it doesn't really work like that.  Instead, I have been up shedding stubble all over the greater Metro area and, after six days, am still left with a hair yarmulke. 

Yes, my hair is falling out....everywhere but from the crown of my head. 

I feel like the cancer monster is getting back at me for kicking ass through the second round of chemo.   In exchange for increased energy and a healthy GI system, I am now afflicted with the opposite of male pattern baldness.  Its so ridiculous that it is, quite honestly, hilarious. 

-----

I made two big steps forward toward normalcy this week.  First, I went back to work.  For those of you that just started reading this blog, I am a lawyer.  I have a specialty practice area and only work for a few attorneys, all of whom I adore.  However, I can't say that I adore working in a law office.  Even in great firms like the one I work in, there is always this overarching vibe of panic mixed with self-importance mixed with entitlement and expensive cologne. 

After two days back in my office, I can already see that my biggest work challenge will be not letting this vibe ruin my new sense of zen.  My office is on a busy hallway and I frequently found myself trying to concentrate over loud conversations that made me want to tip over my desk and  run around in a circle screaming "NONE OF THIS REALLY MATTERS."  Nothing would ruin zen like a psychotic episode. 

Second, I started back up with strength class on Tuesday.  I'm sore.  But it's a welcome soreness because it is movement related, instead of caused by surgeries or medication or being unable to sleep.  I have to be very careful not to stress my affected arm and, this morning, learned the hard way that I have to focus a bit more because misjudging the speed and trajectory of a medicine ball could mean taking an eight pound weight directly into the chest.  Not good when one has a port on the right side and a structurally compromised half-boob on the left side.

This...I Can Deal With.

Cycle 2, Day 4 is almost in the books.  

I'm still really tired from the chemo, but life has been so much easier this time around.  Physically, I have had enough energy and motivation to do my daily walkabouts.  Today, it was just three meandering laps around Willamette Park with my friend Delyne, but yesterday I was able to do most of Terwilliger. I'm hoping to make it down to the Eugene Roubaix tomorrow and get a walk in while the girls race, and Sunday, hopefully, take my track bike to the velodrome for a half hour or so.  A couple of good runs off of the top rail at Alpenrose will definitely be good for the legs--and the soul. 

Mentally, its been like living on a different planet.  Simply put, I feel like I can deal with all of this right now.  

We made a few changes to my medications this time around and I think it has made part of the difference.  I'm taking half of the original steroid dosage and, fingers crossed, haven't had any nausea complications as a result. My skin immediately cleared up and it has been easier to wind down in the evening.   I've also don't need as much sleep medication.  Part of that is probably attributable to the lower dosage of steroids, part of it to keeping up with the exercise. 

I've become one of "those people" in the last two weeks.  You know, "those people" that watch every little thing that they put into their body.  Many things have been eliminated from my diet because they don't agree with my newly finicky stomach:  coffee (!!!!!!), processed sweets and heavy carbs, soda.  I'm drinking a ton of homemade iced green tea and Nuun-flavored water.  Alcohol doesn't even sound good...a glass of wine or a half of a beer with meals on my good days has been all I've been able to handle. 

And I'm eating like a champ:  lots of protein, fruit and only organic eggs, dairy and meat.  Slowly learning how to work more legumes and greens into my daily routine.  It's been hard because by the time I eat everything on my "must-eat" list, I'm usually at my food intake limit for the day.  (The anti-nausea meds keep things down, but also make harder to funnel stuff in the opposite direction.)

Too bad it took me 30 years to consciously think about these things, because, all things considered, I feel great right now.  Less toxic, less bloated. Able to, you know, deal. 

Time for a nap...have a wonderful weekend, y'all.  I'll get into some trouble this weekend and have some good stories on the flip-side.