Previous Experience

Yesterday, I had my very first chemo treatment. Prior to that, we met with the physician who gave me great news that my abdomen and pelvis are clear of any metastatic disease and that my brain also remains clear. AND the affected node in my chest is actually smaller than the original scan. It's a little scary knowing you have an aggressively growing cancer and in the weeks that follow surgery, it is important to focus on the tissue healing aspect of that surgery. Once chemotherapy is initiated all healing of tissues stops. Chemotherapy breaks down rapidly dividing cells which are also cells required for healing damaged tissue. That is why it is imperative that you are as healthy as possible (except for the Cancer part) prior to starting chemo. We got the message yesterday that yes, I was healthy enough to begin chemo which strangely enough, brought both anxiety (related to chemo) and relief that my cancer would no longer have an opportunity to proliferate.
Changing hats from Oncology nurse to Oncology patient is an interesting dynamic. The nurses treat you as one of their own and yet the experience is dramatically different from the other side of the chair. I had a nurse yesterday, Jennifer, who was young and sweet and caring but also efficient and brilliant. I liked her. She was visibly nervous about having a nurse as a patient. We all are. Nurses are the best (and the worst) at watching your every move. Every self-respecting nurse asks herself, what if it was me? What would I want to see my nurse doing? Washing hands, not taking shortcuts, taking time to explain things, advocate for my patient and what she might need. Jennifer did a nice job.
Then came the chemo.....I get a medication called Adriamycin. It's a vile, thick, red liquid that they inject directly. Having been an oncology nurse, I asked my surgeon to place a port in my chest wall during my mastectomy. A port is a device that sits directly below the skin and has a rubber stopper facing out, but it's under the skin. There is a catheter attached that goes into the cardiovascular system, specifically the sublcavian vein. The convenience of this is wonderful. The Oncology nurse gets a special needle and pokes right into the rubber stopper through the skin. No multiple IV starts and my veins don't get tracked out and damaged which is important for a girl who likes to go sleeveless in sunny California.
Anyway, Jennifer drove the Adriamycin into my port with ease. After that, I got Cytoxan over 2 hours. Soon after that, I was de-accessed and we were on our way home.
The multitude of new sensations were intriguing. Thankfully, I have lived a very full and colorful life of amazing experiences and I can find an association to what's going on with me that does not allow me to freak out. The first things I noticed were Brain fog. Who slipped me a Mickey? I don't know but it's time to leave the bar. So, I stood up to leave and suddenly, I'm walking sideways....
Did this scare me? Absolutely not, because I had been in this state all too many times before in Europe, in Park City and just leaving the Coloma club. Yep, I felt loaded. Marek looked a lot cuter and I was ten times braver than I was when I went in to the place. I even high-fived the first nurse at the door. Dude, I got this. I'm a pro at this. Ever had that experience when you are in a public place, trying to pull off being completely wasted, head spinning, eyes fogging, trying to find the door? What's your first thought? Please don't let me fall down and please don't let me hurl in front of this really cute guy. You think you are stealth and that no one else around you knows, but the funny thing is, everyone knows. The only bummer is that this drunken chemo state is not fun. It's the un-fun part of being drunk. It's the "oh crap, I drank too much and now I feel like hell" part. I am feeling a little robbed at this point that I didn't get to flirt and break out my dance moves first. However, it's a feeling I've had before and I am grateful to know that this too shall pass with rest, and possibly chocolate milk.
The drive home was uneventful. I didn't get worse and tried to engage in intelligent conversation with the cute guy I picked up at the chemo clinic. The fog in my head was clearing a bit and sitting was better than standing. By the time we hit Sacramento, I was ravenously hungry.
Because of the intense feelings of nausea, many chemo patients don't eat. They lose tons of weight and it's hard to get what little nutrition in to the body because the lining of the GI tract is being killed by chemo. It's super important for chemo patients to eat when they can. Frequent, small meals are generally advised and grazing throughout the day on nuts, fruits and vegetables is preferable.
Wondering when I would be this hungry again, I suggested we celebrate this momentous day and go for sushi. I soon discovered a new chemo staple: Miso Soup. It was sooooooo good. It was warm and salty and yummy. I could eat it all day. Then Marek and I chowed down 3 huge sushi rolls. They tasted like heaven. One of the other cautions with chemo is the tastebuds change. It's advised not to force yourself to eat foods you normally love because later you will no longer love them. However, today's sushi was by no means "forced". It slipped down quite easily.
When we got up to leave the restaurant, my sensation vacation changed to another well-known feeling. Complete and utter exhaustion. Not just tired after a workout, or a long day with the kids. Nope, exhaustion like you may have only felt once or twice before. Thankfully, I have.
11 years ago, before Marek andI had the kids, we went to Nepal and self-support trekked to Everest Base Camp. We climbed from Lukla at 9,000ft above sea level to Kala Pattar which peaks out at 18,390ft. We carried our own gear much to the dismay of the local culture although I think they were okay with it since there weren't any porters available with a multitude of mountain climbs going on at the time. So, carrying 45lbs, we trudged our way up up up. At about 15,000ft, I felt like I was trying to run through a giant vat of molasses. I could hardly put one foot in front of the other and my head felt like it was going to explode any minute. Sure, I was in the early stages of High Altitude sickness. I felt pukie and weak inside and decided that sleeping a little further down was probably a good idea. After a little climatization, we soldiered on to a town called Lobuje. It's more of a hovel really but they had a teahouse there that served potatoes and eggs. I remember feeling so undescribably exhausted here. Sleep was restless at best and recovery was difficult. At these altitudes your body does not heal as well and it's hard to get enough adequate nutrition that your body is screaming for. There isn't a vegetable for miles.... All we did was sit out on the porch for the entire day. We drank tea and ate potatoes and eggs. The idea of putting my hiking boots on was as daunting as climbing Everest itself. Every cell in my body was rebelling against me. I was exhausted.
Yesterday, I revisited this level of exhaustion. My whole world had slowed. All I wanted was to lay down and when I did, I couldn't sleep. I was restless and pukie, but not rattled. I was thankful. Thankful that Marek had won a sales contest that bought us two free tickets anywhere in the world. Thankful that both Marek and I chose Nepal instead of Florida or Hawaii, like the company anticipated. I am thankful that the husband who took me to Nepal was laying right next me and I could say to him, "Remember that night in Lobuje? How awful we felt?"
"(sigh) Yeah."
"It's like that."
"Oh. Bummer."

Marek

Change the way you see things, and the things around you change. ~ unknown

I met my husband on the river. We worked for the same rafting company. Actually, he had been working for said rafting company for over 3 years. At 26, I joined the ranks of ECHO's finest class of '93 and earned the title "first year guide". I had missed guide school due to finishing college, so I was already a remedial case. My choice to run rivers for the summer was sort of , last minute. Fleeing a failed relationship on the heels of graduating college, I needed to fall off the radar of my existing life, so I loaded the roof of my '91 Subaru with a windsurfer, 2 bikes and a kayak and headed west. Two of my very good friends already worked for the company and were transitioning out of river running to the "non-seasonal" life. They put in a good word, and there I was at the preseason kickoff party in a room full of 18-20 somethings on the heels of my own 3rd decade. While most of my friends were getting out of seasonal work like coaching skiing, or river guiding, I turned down a $30,000/year offer to "get my head together" working for $50/day.
My friend showed me around. Her significant other and good friend of mine had yet to arrive. He had been out kayaking with friends that day. Among my new class of first years, there were two guys from the Bay area who were already drunk by the time I arrived.
"I'm Tim."
"I'm Jake"
"I'm Tori, nice to meet you."
"Can we get you a beer?" (This would prove to be their greatest service in the 6 years we worked together).
My friend already had designs on who to set me up with and started introducing me to them. Unbeknownst to her, I had sworn off men forever and was planning on joining a convent when the river season was over. I was hear to get some survival skills, learn to live outdoors and navigate rivers. I was to be a rugged individualist, swayed by no man, and if anything, was considering relationships with women. I was still working on a plan to make this work as sex with women didn't appeal to me in the least. However, I'd had it with men emotionally and was convinced I could "choke down" a female relationship somehow. At some point in the evening, it became evident that my lack of interest was beginning to show and I was getting ready to excuse myself. My friend's significant other finally arrived, and on his heels was the most visually appealing human being I had ever laid eyes on.
"WHO is that?" I demanded.
He was beauty and perfection and walked on air. His long brown hair was thick and slightly curly at the end. He was tan, fit, and had a bright white smile that made my knees shake. I was paralyzed as he walked over to us and we were introduced. His voice was deep and definite and his air of humble confidence was intoxicating. He wore a worn white, T-shirt, red linen pants with ties at the ankles and one pure, silver ring on his second toe. I could not take my eyes off of him and felt like everyone in the room could hear my heart beating.
"We've met before" he said.
"Hmmm, I don't remember."
"Great, I'll try not take it personally."
Off to a good start, I remained as aloof and uninterested as possible. I avoided him, sat on opposite sides of the room, tried not to engage. I feared it was obvious that my Fight or Flight mechanism was doing overtime. He was ruining my plans to be independent and fierce. Later, it turned out, he managed the river I wanted to work and he held it over me with invitations to "train" or "learn the camp routine". Having missed guide school, I needed the time on the river so approval was simple. He turned me into a puddle of girlie mush, and it was not serving my purpose. Finally, after three weeks, I gave in. I succumbed to his manipulation of our sleeping locations and the sweetness of that very first kiss is still fresh in my mind. We've been married 15 years.
Over the years, my husband and I have done some fairly amazing things. We did a lot of kayaking together throughout California and Oregon on some challenging Class IV and Class V rivers. Mostly, I was in fear of my life, but that smile and the way he looked into my soul made me follow him everywhere. Often, I was paddling at a level over my head. I would get to a rapid and he would tell me the run. He would catch an eddy in the middle of the drop and be there waiting for me. When you approach a rapid, often, there is nothing but a horizon line and no way to orient yourself in the rapid until you are right in the middle of it. It's a leap of faith of sorts. White-knuckled and petrified, I was always determined to go charging into the rapid and nail the move. I surprised myself on just about every occasion, and eventually became a fairly decent kayaker. Kayaking, for me, was always about being scared to death and overcoming that fear by charging right toward the edge of a watery abyss.
Over the years, getting "non-seasonal" jobs, buying a home, and having kids, my husband and I seemed to have traded that intense connection for a quieter, sacrificial-type of love where he goes to a job he doesn't choose for himself to provide for his family and I embrace the roles of homemaker and mother, jobs I had not ever envisioned for myself nor had the remotest idea of how to perform. We lament over petty issues from time to time and frequently disagree over food budgets and ice cream flavors.
We now embark on an entirely new adventure. One that has blind-sided us and caused us to ask ourselves, "are we living life to the fullest? Are we choosing the life we wish to live? " It's an answer that will have to come later as now that we go barrelling into the challenges of a cancer lifestyle, we are now forced to look back on our life experiences for guidance.
Cancer scares me. It's a disease that kills people and turns survivors inside out. However, the only way to get through it is to charge it, face it full on and build a really big cheering section on shore. There's no portage option. You have to run every drop, without seeing it first and nail it. There's no one in the bottom eddy with green eyes smiling up to you with love.
A year or so ago, I went kayaking by myself with DeRiemer Adventure Kayaking. The owner and river guru, Phil DeRiemer and I had the good fortune of running a stretch of river together and he pushed me out to the front. I caught every eddy. I was afraid to lead, and had no confidence that I could go down river without having someone to show me the line, But Phil was persistent, an gently taught me how. It was a crossroads in my kayaking but it was also a realization that perhaps it was time to be that person. It was time to grow up a little and be the smiling person in the downstream eddy bringing comfort to fledgling boaters.
Cancer treatment is a lot like charging the horizon line, hoping you are on line and the maelstrom below is not going to eat you up and spit you out, but even if it does, most often you come out changed for the better, if you come out, that is.
My husband always ran the drops first. He'd find a visible eddy and sit in it, looking up at me with those big green eyes and gesturing with his paddle where the line was. He always had a big, genuine smile on his face like there was no place he would rather be. And I, smitten with those eyes and that smile, would follow him anywhere.
However, I am the first one running this Cancer drop/horizon line, and this time he is right next to me, big smile and green eyes, holding my hand with confidence that I will make the bottom eddy on my own just fine, just like Phil did that day in Ecuador. And as I pull my husband into the watery abyss with me, I am reminded that perhaps it's my turn to read and run. It's my turn to smile and be confident and let him know that I've got this. That it's my turn to sit in the downstream eddy and let him know that the drop is clean, that eventually, there's a pool at the bottom, and that there's a big cooler of ice cold beer at take out. Good news: my husband will still follow me anywhere.

Newton's First Law

There's an old movie called "Bringing out the Dead" that came out in 1999. It's about a paramedic working in a burrow in New York and the storyline is how he wrestles the demons of the people he's failed to save. It's considered a drama/thriller, but to most paramedics or ER nurses, it's a comedy. It's a fairly accurate rendition of the challenges of the emergency healthcare system with patients handcuffed to geurneys, tragic stories of crisis and the chaos that engulfs busy emergency rooms. In one scene, as Nicolas Cage's character walks into the emergency department of a New York hospital, and a characteristic setting of chaos and mayhem, you overhear the triage nurse talking with a heroin addict presenting to the ER with a request for detox. "Let me get this straight." she says. "You shoot poison into your veins and then come here expecting us to fix it?"

I keep thinking of this line over and over, infusing my own situation into the line. "Let me get this straight. You're going to shoot poison into my veins to make me BETTER?" Seems so counterintuitive. And it is. To kill Cancer, one must kill any cell that divides rapidly. That's great for killing Cancer but that's really bad news for the cells of my GI tract, hair and nails. I'm trying to imagine how awful it will be but the unknown is too vast. I can tolerate pain. I can self-motivate my way out of laziness or apathy. I just don't know the best way to push through this cancer patient thing. Do I push myself to be active or is it time to rest? Hard to say and a challenging question for a physically active former athlete. The not-knowing is unsettling and everybody has a story to share or a treatment plan that worked for so-and-so....They often conflict with one another.

This whole new way of life for us is surreal. There's the never ending "good news- bad news" scenario. Life continues to go on and the world turns on its axis despite the fact that you feel like you are checking out of it with a Cancer diagnosis. It seems like something global should be happening but it's only happening to you. As if to add insult to injury, there are no symptoms. I feel no different, but really smart people with lots of fancy gadgets like MRI's and PetScanners are telling me the big bad wolf is coming. I am skeptical and yet, I've seen it too many times in the Emergency room when people ignore the advice of genius. It's tragic mostly.

Tomorrow they will fill me full of poisonous substances that may or may not affect me.It resembles a rite of passage. For me, a passage to menopause and premature balding. I'm thinking Heroin isn't such a bad idea at this point. I would like very much to do this with grace and style and the only way I know how is to meet it face to face, and all the while not let it deter me from my path. For now, I will support Newton's First Law: A body in motion tends to remain in motion until acted on by an external force. Potential external forces may include overwhelming fatigue, uncontrollable vomiting or diarrhea (or both :-(), my doctor or my husband "says so" or there's a really good movie on DVD.....Otherwise, I plan to keep moving, test for my green belt this Friday, take my kids to soccer practice, and kayak all weekend. Come on Cancer, catch me if you can.....I'm betting you can't keep up for a minute.

2 Crises are Better Than One

"90 miles per hour isn't too fast to drive. I mean, hell, I used to ski this fast. That's it. I'll only drive as fast I used to ski. That sounds like a fair upper limit."

This was one of the many thoughts that drifted through my mind on my way back from San Francisco today. Today, I had my appointment with my new rockstar oncologist, Dr. Mark Moasser, who, by all intents and purposes, is a Cancer rocket scientist. Before I go on, I must openly and publicly thank Dr. Andrew Solomon for facilitating this appointment. Andrew,made a call after i had reached the upper limits of frustration by not being able to get an appointment with UC Davis Oncology or Sutter Cancer Center in Sacramento. Before I called in some of my backdoor contacts, Marek beat me to it and called his old, river-guiding friend from his Bio Bio days and told him of our predicament. 15 minutes later, UCSF called and registered me as a patient. I think Andrew is royalty or something. Either that or he gives really good wine at the yearly Christmas party. Whatever it is, he may have saved my life today.

Today's story is a long one, so get a cup o joe or a lemontini and sit and read. Today started out when I woke up "full of awesome". I was so proud of myself that I asked for help with the kids. Natalie Patterson agreed to pick up Zoe after school and Mr. Tom agreed to take Stella. I headed to the Bay Area while Marek left for San Francisco at O-Dark-thirty to give an important hoity-toity presentation. I was on my own to meet my new oncologist. After a swanky lunch with an old ski buddy, I made it to my appointment on time (unusual, yes). I was taken to an exam room and told to undress from the waist up. As I sit waiting for the Dr., I started having feelings of wishing someone was there with me, and no sooner after I thought it, there was a knock at the door. In walked my extremely awesome husband who, through some miracle, fanagled a way to be there. My husband is a phenom.
On to my appointment: My new oncologist is a New Yorker. Direct, to the point, and short on small talk. He reviewed my case and in no uncertain terms pointed out that my cancer is the highest histologic grade (which means it grows fast), grade 3 (out of 3), Stage III C (out of IV), "High-Risk" and Aggressive. He proceeded to lay out a treatment plan complete with rationale, that included ACT regimen (read "gnarley") chemo lasting 6 months with Herceptin (adjuvant hormone therapy) lasting 1 year, followed by radiation (duration to be determined). He painted a very ugly picture but he was clear to say that my prognosis was "good" because despite this cancer being "high risk" (read gnarley) and aggressive, it is also the cancer most studied and most researched with the most successful treatment options. AND he just so happens to be a
smarty on the subject. He has published papers on my specific cancer and is currently involved with finding a potential cure via the mechanisms that actually turn this cancer on. He's a UCSF professor on the subject having done his fellowship at Sloan Kettering Cancer Center in New York, and he has "sniper-esque" radiation buddies across the hall from his office. He is confident that the treatment plan outlined will reduce my mortality chances from 80% to 10% barring any unforeseen circumstances, which are unlikely, given that this guy leaves no stone

unturned....And he's likeable. He listens, answers questions and doesn't answer what he doesn't know but instead, refers you to the guy or gal who does. I like that in a doctor. He also said I qualify for a Phase III clinical trial after my chemo treatment.

Let's review:
UC Davis actually received my referral paperwork but two weeks later had still not made a decision whether or not to accept me as a patient. They said they'd get back to me. Sutter finally called and said that I was not officially "referred" by my surgeon but that I self-referred even though my surgeon's office sent all of my test results and paperwork (technically a

referral).

Sutter Health apparently doesn't accept "self-referrals" and the oncologist I chose was not accepting new patients. It took them two weeks to tell me that. I think they are missing the point of "early detection." FAIL.

UCSF calls me fifteen minutes after another physician intervenes, registers me, tells me where to have my information faxed, and makes an appointment with a rockstar specialist for me 5 days later. I was impressed by the fact that they actually had real people answering their

phones and they returned calls within minutes. Astounding!

Hmmmm, which system would you choose? Can't wait to write those "How are we doing" letters.....
So, it looks like the winner is going to be UCSF. Marek and I signed up for the whole shebang. What's a 2-hour drive every two weeks when you have a doctor who has more experience with this particular cancer than anyone? I want the rockstar to be captain of my team. I am not

screwing around. If I am going to get the gnarliest cancer that begets the gnarliest treatment, I want the smartest guy on the planet with the most resources....I think i met him today. Not only that but he hooked us up with a genetic counselor, while we were there. She shook my family tree looking for hereditary markers that might have led to this whole mess. Nope. Not looking like it's in the genes.
So....Anybody got a little apartment in San Francisco I can borrow? I start chemo in two weeks.

But wait......there's more.

Caught in the middle of not knowing how to feel about the fact that my cancer is gnarley but treatment is a slam-dunk and in the middle of talking with the genetics counselor, I get the call every mom dreads.
"Um, Where are you?"
"Still in San Francisco. Sorry, I'm gonna be late."

"Well, Stella fell off the monkey bars and hurt her wrist. It looks broken. Which hospital do you want me to take her to?"

Luckily, I have rockstar friends who know how to deal. The Genetic Counselor was very empathetic and kicked us to the curb. It was 5pm. Rush hour in San Francisco. I was not getting home soon. Marek had to return to a conference. Thank you Natalie Patterson for keeping Zoe for the night. Thank you Heather for being one step ahead of me, always. Thank you Mr. Tom

for being calm, cool and collected in a crisis. Thank you Marshall Medical Center Emergency department for being extended family to my family. Thank you Katy Mulligan for dropping everything and running to be by Stella's side as substitute Mom. Thank You Laurie for keeping me from killing the dumbass in the toyota camry who refused to get out of the left lane, and thank you for whoever hosted the CHP convention that kept patrolmen off of I-80 East. Stella did break her left wrist fairly significantly. I made it to Placerville in two agonizing hours to find my darling Stella mildly sedated, reduced and casted by an awesome Ortho, and adored by an entire ER. She was brave and respectful and showed courage beyond her years at a time when she needed her family the most. There are not words for the gratitude I feel for all who surrounded her with love. I am sad that i was not there but I am so proud of her resilience and I

am eternally grateful for the kindness of friends.

Nope. 90 isn't too fast to drive, but I promise to never drive any faster than I used to ski. (And as long as the kids are not in the car....)

Tomorrow will be better.

Phase I complete

Surgery to remove my left breast went well. I woke up
in a haze in recovery babbling about how I felt I got hit my a mac truck and that I felt like I did 600 push-ups....The ramblings of a person waking up from anesthesia can be incredibly entertaining or downright annoying. i was praying that I was the entertaining kind. I begged my recovery nurse to tell me: Did I moan and cry incessantly?"
"No, you did great."
(2 minutes later....)
"Did I moan and cry incessantly?"

Repetitive questioning is relatively common while your nervous system comes back to life.
My recovery nurse was an angel. She anticipated my needs before I knew I needed them. Narcotic medications and anesthesia have a nasty side effect of dry mouth. You wake up feeling like you've been sucking on a rock. The amount of moisture in your mouth is relatively close to that of the Sahara Desert. Your lips stick to your teeth and gums and you are unable to expectorate any saliva. It's torturous. My nurse used these sponge swabs on a stick to moisten my mouth between my cheek and gums. It was pure heaven. It was like getting a really good foot massage. It felt so good. I could have had her do that all day. Because I was so dopy, I

couldn't rely on my own hand to actually find my face. I probably would have stuck that swab in my nose or eyeball a few times before hitting my mouth. I was thankful that my nurse already knew that relying on me to do this for myself was not going to serve anyone.

We are avid Pirates of the Caribbean movie fans. My kids have seen them all and we watch them over and over at home. It's got something for everyone: Orlando Bloom and Johnny Depp for me, Keira Knightley for my husband, and a lot of inappropriate behavior and innuendo for my two young children.....We know all the lines and sing the songs while we dress up and eat popcorn every Friday night. It's a bit of a ritual and the whole Pirate thing rings true with us. Once my vital signs were stable and I was no longer babbling incessantly, it was time to go to my hospital room. Having been a nurse working in the cath lab, I was able to wear one of my surgical hats for my surgery. My particular favorite is a pink scrub hat with the Jolly Roger all over it. I call it my "Pirates for Breast Cancer" hat. At some point, I believe my husband referred to my hospital bed as a ship. Probably because as I was waking up, I was getting demanding.... Of course every ship needs a captain and I was captain of my hospital bed. As my nurse is rolling me down the hospital corridor I took advantage of this moment to call attention to myself by exclaiming, "Hoist the Colors!". Apparently, this drew a few laughs. Happy to know I'm one of those entertaining people when I'm drugged up. Repetitive, demanding and entertaining, I survived the surgical removal of my left breast. The pain was nothing like having my hip replaced or knee surgery. This was easy. I was so happy. The majority of my cancer was gone and while one little node remains, I am feeling more at ease. Phase I complete.