Days 5-6. Not a Happy Post.

I keep thinking it can't get any worse, but then it does.  In stages and fluctuations.  Its moved from a funny stomach, to a wonky stomach plus fatigue, to fatigue that was manageable emotionally, if not physically.  

Chemo dump is on a whole new level today.  Like the amp in Spinal Tap.  You know, the one that goes all the way to 11.  Chemo plus sleeplessness equals...seriously, fuck me, this is awful.  I am having a hard time staying awake for more than 15 minutes and I ache.  Everywhere aches, my skin, neck muscles, scalp, toenails.  Toenails ache, who knew.

The only exercise I am getting is in my head.  The tug of war between the voice that pleads to have my old life back and the one that shouts that I have to be stronger than all of this. Who has the advantage depends on whether I'm grateful or angry that it is an absolutely beautiful day in Portland. Right now I have the windows and curtains wise open, and am curled up with my new quilt in bed, closely supervised by the cats.  Grateful that its not only a perfect day for a ride, but also the perfect day to rest and heal. 

Tonight, who knows. That is part of the sonofabitch of all of this.  Being trapped in my own body and in my own head.  The downward spiral of anger and loss and sadness is so easy to get trapped within and, at night, there is no one that can pull me out of it.  Except me.  And my goddamn toenails hurt too much to pull anything right now.  

But it will get better.  It will get better because it has to.  The challenge is not losing my mind in the meantime.

Cycle 1, Days 3-4

From Wikipedia, the word of the Day(s):

Fatigue (also called exhaustion, lethargy, languidness, languor, lassitude, and listlessness) is a state of awareness. It can describe a range of afflictions, varying from a general state of lethargy to a specific work-induced burning sensation within one's muscles. It can be both physical and mental. Physical fatigue is the inability to continue functioning at the level of one's normal abilities.

I am so fucking tired.  And there's really nothing funny to say about it.  Chemo is seriously lacking in a sense of humor...what a crabby whore.  Sleeping 15 hours a day is not funny.  Forgetting words and whether I've taken a shower today are not funny.  The effects of horse steroids are not funny.  Being too tired to flee your own chemo farts is not funny.  OK, maybe hotboxing oneself is slightly funny (especially when the cats get caught in the fray).  But don't laugh about it to my face.  Yet.

----

What I really want to do today is send A HUGE THANK YOU AND LOVE YOU out to the lovely ladies that collaborated (behind my back...the only time they'll ever catch me with my guard down) to make a beautiful new quilt for me to cuddle in whenever I need some good, strong sisterhood energy:  Sarah, Casey, Cathy, Heather, Heidi, Tiffany, Stephanie, Alice, FT, Margi, Anna, Mindy, Shari, Sage, Jen W., Michelle, Angela, Alia and my wonderful mother. 

With a particular shout-outs to Sarah for masterminding the whole affair and to Steph for her very inspired "Whip Cancer" square:

You all rule.  I am so blessed. 

Guest Author: The Most Awesome Race Report Ever

Quick Cycle 1, Day 2 Chemo Update:  I was wonky in the stomach this morning, but pills and lots of naps had me feeling a lot better this afternoon.  I walked for an hour this evening, with a break at Zupan's for a Haagen Das bar.  

Now onto the main event.  Kings Valley, as written by my Aussie teammate, Jamie.  Read it and try not to laugh out loud.

----

WARNING, WARNING – unusually high number of scientific jokes contained in this report. Do not read if you have liver damage, are a serious cyclist, or may become a serious cyclist. Your doctor can conduct a simple test if you are at risk.

April 12th, 2010

Dear Editor of ‘Crap Cycling’,

Please accept our paper on the analysis of Sprint Wombat's King's Valley Road race. We feel that our findings will be of interest to the wider cycling community and our hope is that with publication in ‘Crap Cycling’ others will learn from his mistakes. In accordance with the international nature of the Journal we have used SI units throughout.

We look forward to hearing from you.

Dr. Cannon Dale, Dr. Van Iller and Sir Velo.
Lactic Threshold Laboratory
Institute of Advanced Cycology
Bonktown, OR


Title: The King's Valley disaster – how, why and what!

Study Aim: To dissect the 2010 Kings Valley (KV) road race of Sprint Wombat (‘the subject’). His self-proclaimed goal was to support more talented Hammer Velo team mates; Driveby, El Luchador, The Kid, Mr Smith, The Neighbor, The Quiet Achiever, and Ryan (no known alias), and finish as high as possible with a minimum of errors. This paper is based on observation, satellite imagery, mental telepathy and interviews with the subject and race officials. It analyzes the known knowns (but not the unknown unknowns - we know what they are) and attempts to understand what went wrong.

Method: The subject (aka ‘The Wombat’) rode his bike around rural Polk County (Oregon, USA) for 93 km (56 miles) under OBRA race conditions. The subject rode a 2010 Cannondale CAAD 9 (54 cm) modified with fancy titanium time trial seat-post and saddle. 50/34 x 11/23.

Results: 47th out of >60 (actually number of finishers will never be known because of mass quitting and at least one rider who took a wrong turn and nearly ended up on 99W).

Discussion: With input from a well meaning, non-cycling State Champion, a well-crafted team plan was formulated. The ‘body mass index (BMI)-challenged’ were to stay close to the front of the pack to control the pace. The plan was for these BMI-challenged individuals to work later on in the race protect the 4th percentile BMIers (light fourckers) for the final sprint. The subject totally ignored this plan for no good reason and settled mid pack for the first half lap. This turned out to be a grave error because of the narrow road, large pack and large quanta of inexperienced riders who braked at every opportunity. There was little room to pass. The wind on the back half of the course was formidable but not an issue for the ‘mid-pack’ plodders.

The 25 km (15 mile) point marked the hill that what would become the finish line. At a mean grade of 6.02 (+/- 0.56)% the hill was of modest steepness and about 1 km in length. The subject was in 41st position at this point. Due to his high BMI, the subject slowly drifted back through the pack at -2 m/sec. This backward motion is described in the ‘regression analysis’ plot shown in Figure 1. Within seconds, the subject was ‘off-the-back’ and losing ground at a rate of -5 m/sec. The subject was observed to repeatedly shout at his legs “shut the f*** up, legs”.

As the subject breached the hill he placed his arms in the ‘drops’ and proceeded to increase cadence to 95 rpm. With the tailwind and downward gradient, the subject increased velocity to 43.4 kph in an attempt to rejoin the pack. Within 3 km the subject caught a strong rider from Portobello. Together, they worked to bridge the gap with the pack, passing riders at regular intervals. They gained ground on the pack on the flats at a rate of 10 m/min but lost ground on the climbs and in the wind at a rate of 5 m/min. After working together for 16.84 km they ceased the chase and ‘sat up’. Mr Smith, who had been chasing the subject for a time then caught up and they rode together discussing their options still with 40.09 km to complete the race. The long-range microphone picked up the subject uttering the phrase “mate,……. I’m buggered if I’m going to get another DN-friggin-F”. Mr Smith then replied “although my ass really, really hurts I’m with you all the way, Jay-me”. At this point it turned into a training ride and the subject and Mr Smith rode the rest of the way, taking turns to ‘pull’ each other. Although the final kms (miles) were traversed with 20% lower intensity than something faster, they appeared to be pleased to finish in the top 50. At the end of the race the subject was overheard to remark that his mouth was “as dry as a dead dingos’ donger” and sought rehydration assistance.

In summary, the subject rode poorly and was positioned too far back in the pack to cope with the finish line hill on lap 1. Consequently, the subject was dropped and failed to influence the race in any way at all. We hypothesize that with a more advanced position at the start of the hill, the subject would have been safely cocooned in the pack-womb sucking his thumb. We predict that he would have survived to deeper into the race.

Conclusion: STAY AT THE FRONT 95 (+/- 7.0)% OF THE TIME

Day 1, Cycle 1

Before I get knocked on my ass by the toxic cocktails that were pumped into my system this morning, some updates and some smart ass comments about what I have already learned about chemo infusions.

[Skip the next part if you don't want to read about chemo drugs.]

My first four chemo cocktails are a combination of cytoxan and adriamycin.  This is a standard treatment for breast cancer.  The adriamycin is the hair killer.  It is bright red and pumped into me using a syringe over 15 minutes.  The cytoxan is administered through IV drip over the course of an hour. 

Before these are administered, I visit with the oncologist and a blood draw is taken.  Once in the treatment room, the first course is an IV drip of  super-steroids and an anti-nausea medication.

Then the chemo drugs.  Shit that might burn a hole in the universe shot into my bloodstream.  

After that, guess what....more medication.  I have four bottles:  must-take anti-nausea pills, must-take horse steroids and two sets of  "in case of emergency" anti-nausea pills.  I hope all of it works because I waited at the hospital pharmacy for two hours after chemo.  Rad.  Tomorrow I go back to St. My Cousin Vinnie's for a shot of Neulasta, a white cell booster that aids my immune system.  And for the drugs they were out of at the pharmacy.  Because, as I have learned, hospitals run of things all of the time.  Like sane patients. 

I can expect to feel OK for a day or two and the worst over the weekend.  

[Rejoin here for some more non-essential cancer advice.]

The infusion room at St. MCV's is very nice.  As something that has only been open for a few months, it should be.  Huge windows on two sides, comfortable recliners, and all of the beverages and lights snacks you can stuff into your face while impeded by an IV pole. 

Hydration is my new big THING I CAN CONTROL, so I came prepped with three full water bottles with the goal to get through all of them before I left the infusion room.  The infusion time was shorter than I had expected and I spent most of that time talking or being talked to, so I only made it through two.  Good for my system, but it also meant having to pee every five minutes.   And,  of course, I had to go and pick the seat the farthest from the bathroom door.  Every 450-700 seconds, I would have to clomp past (because, of course, I am wearing cowboy boots...and ninja socks) all of the other cancer patients to the john.  Thud, Thud, Thud. Slam, Flush, Slam.  So much for keeping a low profile.   But I did get all of the adriamycin dye out of my system within 40 minutes. 

Non-Essential Cancer Advice Note to Self #1:  Next time, sit closer to the bathroom door.

Non-Essential Cancer Advice Note to Self #2:  Hospital wireless sucks balls.  Bring more magazines and cell phone charger. 

Non-Essential Cancer Advice to Everyone Else #3: Please text me  at will during infusions.  Playing with my blackberry in an important manner keeps me from staring at other people.  Staring at other people makes me look like an asshole.  No one want to be The Asshole in a chemo treatment room, but I can't help it when I'm anxious.

So help me out on this one. Next round, April 27 from 10AM to 1PM.  If you want my cell number, email me off-line.

Non-Essential Cancer Advice to Everyone Else #4:  Post-chemo retail therapy is highly recommended.  I have been going to Target after all of my big appointments.  All of the adrenaline rush, but for  one-sixth of the price of downtown Portland.  I bought at $15.99 cowboy hat this afternoon.  It is ridiculously fantastic...I haven't taken it off yet.   That or the ninja socks.  Which, considering that I am now also wearing a seersucker miniskirt around the condo, makes me sort of awesome-sauce right now. 

Non-Essential Cancer Advice to Everyone Else #5:  If you don't know about Cleaning for a Reason and are going through cancer treatment or know anyone going through cancer treatment, please go here NOW and learn about them.   While I was packing up my bags, my mom and I just happened to be talking about the service that spit-shined my condo yesterday  (Maid to Shine in Vancouver, WA....did a phenomenal job), the patients next to me and the oncology nurses overheard, but had never heard of it.  WTF?!

These ladies donate their valuable time and supplies to help cancer patients.  All I had to do was make a phone call, get a doctor's note and sign a waiver.  And voila!  You can now eat off of my bathroom floor.  Not that I would recommend it, but you get the point. Cleaning for a Reason pays for it once a month and I am having the service come in twice monthly on the day before infusions.

The doctor's note requirement threw me for a loop.  Apparently there are people out there that fake cancer.  For fuck sake people, really?  For these people I have created a special level of hell.   This level of hell involves screaming uncontrollable three year olds, dog shit that hasn't been picked up, neon-colored skinny jeans, BumpIts and Jack Johnson playing on a continuous loop. And the only thing to eat and drink are PBR and bananas.  And everything operates using Windows 97.  That, to me, would be the worst hell could possibly be.  This is saying something, as I have fucking stupid cancer.

OK,  off to pee (again) and try and control my anticipation anxiety.  Will keep you all posted.

And So It Begins.

The following ditty is about support groups, in general, and, specifically, about the one I went to last night.  I can't tell the story however, without breaking a bit of fucked up news.  R ended our romantic relationship this weekend.  That is all I really want to say about that until I work through some things in my head and with him.  I'm not going to judge, blame, make excuses for him.  Suffice to say that both of our lives are really fucked up right now and we both need a lot of time to get healthy. 

So, support groups.  After last night, I have this theory that most people come to support groups partially for the support, but mostly because it is cathartic to tell horror stories to terrified individuals.  People with normal experiences don't come to support groups.  People whose vaginas turn inside out and grow hair on their backs during hormone suppression therapy...those are the people that go to support groups.

Which leads me to another piece on non-essential cancer advice. Which I will preface with my second favorite line from Raising Arizona:  Let y'all without sin cast the first stone.

Lesson #2:  Do not show up to your first support group high.  

I needed a serious break from my life yesterday afternoon.  Insomnia, the break-up and chemo were all bearing down on me like a lead weight.  Too exhausted to go exercise, but too emotionally wired to sit still.  The solution:  some specially prepared baked goods and three hours of "Nurse Jackie." 

I'm not an expert in the craft of baking medicinal food stuffs, but my guess is that picking dosage is an art form.  Too little, you just get gassy from eating 14 rice-crispy treats.  Too much, you end up upside down on the floor of your condo talking to the ceiling while your mother watches.  Then you fall asleep face down and wake up with a puddle of drool on the Pergo floor two inches from your face.

This is my life as a cancer patient, folks.  A total champion of humanity.

By the time my ride to support group arrived, I had rejoined the land of the living, but still had a nice bit of a head buzz.  We arrived at the meeting a bit late, me with a not unexpected sense of paranoia that it was going to take everyone about 15 seconds to realize that I was showing up to a cancer support group stoned. 

We all quietly ordered drinks while one woman was giving the group her health update.  The McMenamoron that was serving us rolls back up to the table five minutes later, interrupts a heated discussion on vaginal dryness and calls out our drinks in roll call.

"Water, water, water, iced tea, green tea, water, water.....jack and bourbon."

Everyone pretends not to stare as I take my drink, remove the straws for ease of access and take in 3/4 of the drink in a single pull. 

It takes two hours before it is my turn to talk.   I drink two more bourbons and listen to stories about vaginal atrophy, unexpected hair growth, debilitating bone pain, treatments that don't work and denied health insurance coverage.  I am freaking out by the time it is my turn to talk.  Lucky for me, we are already 20 minutes over time and everyone has one foot toward the door.

No one asks questions as I go through my diagnosis and treatment and when I get to the part to about the break-up and the baked goods and the bourbon, I get a relieved sense that my obvious bout of binge drinking is completely understood.  They've all been there.  And there is no shame is seeking relief anywhere we can find it. 

----

Chemo countdown is down to 17 hours.  I'm trying not to take an outsider's view of my life right now.  It's easier just to take everything an hour at a time, rather than obsessing about side effects and reorganizing my care-giving now that I'm now a single person with cancer. 

So, for now, its all about making lists, packing for chemo and wrangling up some lemon drops and ginger candies. 

Thank You, Team in Training.

I'd been meaning to write something like this for awhile, but finally got around to it when my friend Cat asked me to put something together for this year's Team in Training team.  

It's not exactly blog-format-appropirate, but I like what I wrote enough to include it here verbatim

--
First, thanks to all of you for being here.  I heard you all were riding Hagg Lake today and it made me smile...I have fond and not so fond memories of racing my bike out here in three consecutive weekends of monsoons last spring.  Second, I am sorry that I am not here to meet you myself.  I am down in Corvallis supporting my cycling team at a big road race, but hope to make it to a Saturday workout later in the spring.  And thanks to Cat for reading my words for me.  I have faith that she'll be able to convey the perfect amount of cantankerous wise-assery that I have become known for.  

Some of you know me, but many of you do not.  I was part of the very first Team in Training Pacific Crest team in 2005 and was hooked from the first moment I stepped onto the track with my new teammates.  I was a mentor and captain for the 1/2 ironman teams in 2007 and 2008 and a swim coach last year.  Although I have transitioned from triathlon to bike racing over the last two years, I still consider the Pacific Crest teams part of my extended family. 

On February 23, 2010, I was diagnosed with Stage IIB Invasive Ductal Carcinoma.  For those of you not fluent in cancer-ese, that means breast cancer.  The five seconds that it took the doctor to give me my diagnosis completely changed my life.  At 4:45 PM I was a state champion bike racer and reluctant part-time attorney.  At 4:46 PM I was a 32 year old cancer patient.

Over the last six weeks, I have undergone three different surgeries to remove the tumor in my left breast and several infected lymph nodes.  I start four months of chemotherapy on Tuesday.  That will be followed by 8 weeks of radiation treatment later in the fall.  If you want the hard and fast medical details, Cat can direct you to my blog. 

We all started this TNT journey for a reason.  Mine was because law school interfered with my ability to really support my mother while my grandfather died of Leukemia in 2001.  I felt like I had to put something back into the world to make up for what cancer had taken from my family. 

But what I want to talk about is why I stayed on my journey.  Take a minute and look around you.  This was my the reason.  My teammates. 

These people will become your rocks in the next few weeks.  Some of them only until Pacific Crest, some of them for much longer.   These are the people that will not only ride with you in the rain and get catastrophically drunk with you during race weekend, but will also be the first to contact you on scan days or bring you food when you're too sick to get out of the house.  

One of my rocks is my boyfriend Ricardo.  Not surprisingly, we met through TNT last year. In fact, our first real conversation was out here at Hagg Lake a year ago.  It took me six months for me to realize that he liked me, but it has been worth the wait.   We are an odd couple.  I am 155 pounds of leg muscle and stubborn obnoxiousness. He is small and smooth and suave.  When we ride together, he climbs like a mountain goat.  I climb like a monster truck.  But, somehow, we make it work. 

Ricardo was the one that found my tumor and harassed me into getting it checked out when I was sure it was nothing.  He has held my hand in recovery rooms and has helped me unwrap my bandages after every surgery--probably because he gets to fondle my boobs in the process.  He hugs me when I cry and pulls my ear when I get difficult.  I get great care because he flirts with the nurses and he has an uncanny ability to make me laugh in waiting rooms.  You haven't seen anything until you've seen a confused Mexican play with your prosthesis bra in front of your surgeon.  Or talk about boob drains in front of your father. 

Without TNT, I would not have Ricardo.  Or Cat, who visits me even though she is deathly allergic to my worthless housecats.  Or any other of the dozens of people who have lit up my life in the last six weeks.  I think about that every day. 

I love riding, partially because I'm blessed to be a talented racer, but mostly because riding bikes is an experience where our humanity tends to shine through most purely.  I have never seen human joy and suffering like what I have seen on training rides and at the end of bike races.  The people that are brave and wise enough to show those emotions to the world are the people that you need in your life when the going gets rough. My going is rough right now and the people I have depended on the most are the ones that I have pedaled with over the past six years. 

My hope for all of you is that you will never have to lean on your TNT family like I have had to lean on mine. That the worst experience that they ever have to get you through is a flat tire or a hangover.  But it should be comforting to know that these are the people that have the strength of character to step up in times of crisis and chaos. 

You should all be very proud of yourselves for starting this journey.  Not only are your efforts improving the lives of cancer patients, but you are opening yourself up to a world of friendship and camaraderie that only exists on two wheels. 

Now get out there and ride. 

Chemo Countdown

7:  Days until chemo starts.

105:  If all goes well, days until chemo ends.

90:  consecutive minutes I am able to sleep right now.

4: consecutive days I have had sleeping problems.

I probably over-educated myself into this sleeping problem.  As I have spent a lot of time in the last four days catching up on my cancer reading, every night I have a "side effect" dream.  Not really nightmares.  More of farcical exaggerations of my worst fears.  Two nights ago I dreamed that I gained 100 pounds from the steroids and the only clothes that fit made me look like Larry the Cable Guy.  (If you don't know who this is, google it yourself.  I'm not including a link to him here.  On principle.) 

[Warning:  Adult-ish content ahead.]

So when you have chemo all of your hair falls out.  ALL of your hair, if you know what I mean.  Last night I  dreamt that somehow my body got massively confused in the hair-growing back process and I had pubic hair growing out of my head.  The dream was so real (thank you Ambien), that when I woke up at 3AM, I got up and went to the bathroom to check that my head wasn't covered in short and curlies.

Yes, my name is Lindsay and I have chemo anxiety.  Can't really deny it anymore.  There is absolutely no way to predict how the drugs will affect my system.  I could feel crappy two days every two weeks, or I could be in hell for four months.  I could get unhealthily skinny or become a puff-o-saurus rex. I can't wait to get it started just so the uncertainty ends.

My oncologist is optomistic and I believe her sincerity when she says that the side effects will be less debilitating than I think they will be. However, it seems to be a more pragmatic strategy to hope for the best, plan for the worst. 

Many of you that read this blog have also stepped up to help in the last few weeks.  Thank you , thank you , thank you for that.  And here is some information to help you, my team, plan for the next few months.

1. If you have contacted Christy about food and she's told you to hold off for a while, late next week would be a good week to bug her again.  My mom will be here most of the week and will take care of feeding us, but we have run through most of the meals that have been sent over so far.  Please check with her to see what sort of foods I am able to eat before sending anything over.  It is almost guaranteed that my sense of smell and taste will be wacked out.
2. I love visitors, but if you are sick, getting sick, have sick children, work with sick people--I love you, but please stay the hell at home. And when you are here, I'm going to be OCD about hand sanitizer and hand-washing.  Which is totally not my style, but, then again, neither is going through fucking chemo.
3. I am apologizing in advance for the times when I am crabby or fall asleep while you are talking to me. 
4. Autumn Peterson at Verte Massage and Brooke Jordan at Therapeutic Associates/PACE have graciously volunteered to take care of my body for a few months.  Please help me thank them by sending some business lovin' their way.
5. Finally, if I am up to it, make me get out of the house and enjoy Portland. It's going to be a beautiful summer and it would be a shamed if I missed it because I was moping inside watching Heald College commercials and talking to my cats.  

Last item of business.  Above all of my cancer reading, I highly recommend the following book (in spite of its slightly annoying name and format): Crazy Sexy Cancer Tips by Kris Carr.  My copy was borrowed from the St. Vincent's Breast Clinic, but I am going to go out soon and buy my own so I can mark it up.

Kris was my age when she was diagnosed with a rare and inoperable vascular cancer.  Her energy and outlook really resonated with me (and not just the chapter on retail therapy), and, more importantly, her advice got me back to my private journal and motivated me to plan for my future in a way that I have never done before.     

And that's good stuff for a chemo patient, yo.