Monday, March 4, 2013

Sarah Lynn Rouette, April 21st, 1974 to January 7th, 2013

(This was written by me, Sarah's brother Sean, I was looking for a password on my gmail and I saw the email string from Sarah on helping her set up her blog, I didn't realize that she had not changed her password, I posted this over at my place but it still holds true, Sarah, there isn't a minute that goes by that I don't miss you)

I can’t believe you’re gone, a month ago, you had a close call and by the time I got to your side, you were already bulling people around about the proper texture of your coconut jello and the feng shui of the Christmas decorations in your living room, 6 months ago, you were risking your life on that damn mountain bike of yours flying down steep mountain slopes and 2 years, 9 months and 21 days ago you went into see a doctor for a excisional biopsy on her right breast and woke to a world that had cancer in it. But this blog post isn’t about that disgusting disease, it’s a selfish post about me and her and choices we made in life.

 Sarah was younger, other than her shoe collection, she was a minimalist. She was a stubborn, smart, pig headed, fun and had great dreams, she would focus on a goal and it was hers. She made life look easy. She saved up her money, lived in a shack and took huge elaborate trips to far distant lands with a pack on her back but she always came back to Prescott to roost. Me, I ran away like I was being chased by wild dogs and then spent the next 2 decades coming back for sips from that well. I became a Gypsy, joined a band of roaming sailors who pulled into home port on rare occasions and somehow in the middle of that wildness I had got married and had a kid. Sarah being Sarah and never one to beat around a bush, called me a breeder (with great distain) and that I was making a foolish mistake, alright, I admit, she did call that one sort of right.

Years go by, me traveling the world and wearing out my soles while she stayed in Prescott and gathered a community around her.

She did finally settle down and had two beautiful children that she could call her own and somehow became a super momma involved in all sort of outlandish mommy activities. Most of the mom’s I see are military wives or military members and she out momma’ed most of them. For those of you who do not know Sarah, it’s hard to explain the gaggle of momma friends she had around. These girls were her life and she was theirs in ways that I can’t pretend to understand.

If my sister and I have one thing in common, we can pull people together when we put a mind to it. By this time, I had gathered my own community of nerds and oddballs that was connected by electrons and ether and scattered across vast gulfs.

The point I’m getting to is that even though I’m torn up and weepy right now and even though I’m her brother. It’s been two decades since I’ve made a real impact on Sarah’s life and even then, I don’t’ think I shifted it an inch out of the path she made, over the last few years, she’s formed this commune of friends that have been her strength and armor, she was a part of Prescott, not meaning that she lived in it or that she was a Prescott girl. She was as much of the town as Whiskey Row. I’ve only touched her life briefly, a dab here and a dab there, dumb little things like setting up her blog and attempting to pull her out of the dark ages because even though she had a huge brain, she was still at heart, a total Luddite and thought of technology as a passing fad that the rest of us would get over.

We were always off on our own private holy mission that seemed so important at that moment.  If there is anything in life that I regret, I regret that we did not have a proper brother/sister relationship, I regret rushing off those moments when I could have taken more time to take in her amazing life that she had built like a castle around herself and I regret not being there for you when you needed me. This armor of hers, it’s just not hers, it’s the people she’s drawn to herself and right now, it’s torn asunder and I’m sorry, I’m just a dumb boy and don’t have a clue on how to mend it.

My heart aches, I love you sis and miss you terribly.

Tuesday, October 30, 2012

320 little pills

The moon is full and my mood well it is pretty dark. 320 is the number of xeloda pills I took. 8 weeks roughly was the duration of my latest chemotherapy. 56 days of wondering is that a side effect or is it me? 100 little black spots appeared on my skin, melanin pigmentation (known side effect). 2 times a day I had to figure out a story to get myself to swallow these pills. 500 the number stamped on each side of these pink little pills, xeloda is on the other, bio hazard that is stamped all over the bottle. 1000 or more is the number of herbal supplements, rubs, oils, tinctures that I have introduced to my body since my metastatic diagnosis in February 2012. 6 cycles of etopiside/sisplatin infusion. 6 PET scans. No matter what the numbers are or how I put them together, I have yet to find a drug that my cancer  completely responds to. All these numbers add up to a sea of fucking tears that I have a hard time dealing with. 

My latest PET scan showed node growth combined with additional nodes in my abdomen.  That of course is a bummer, no cake should go un-iced though, so the additional bad news is that my stomach also shows uptake as well.  Now I would use the F word again in this instance but once per post is probably enough.  The good news is I can stop taking the pills I was so thoughtfully counting in the 1st paragraph.  The bad news is, they did not work.  We are back to the cancer drawing board with more nodes, a sore swollen neck, and now something unknown in my stomach.  Well when digestion turns south (tee hee) you are referred to a gastroenterologist. This will be a first for me. She does not examine me, I don't really care. She tells me she will stick a scope down my throat, into my stomach, look around and take a biopsy.  Oh yeah, the important part is I need a driver and will probably needs someone to help with the kids, I will be in NO condition to drive.  She tells me this like people do it all the time.  Driving is the least of my worries what about this thing in my stomach?  She won't know until she takes a gander, she re-assures me that PET scans have been wrong. However if it is breast cancer in my stomach...well that would be very bad.  She makes some remark about the quality of my genetic make-up and for some reason I just shrug it off.  I don't even care if I get to know one more doctor is this team of professionals that is trying to get me well.  My Rolodex of nurses and doctors is full to the brim.  I am to a point where I would stick a scope down my own throat to see what is going on in my stomach, rather then fill out another medical history page. That of course would be completely impossible due to my crazy gag reflex and general state of distress when it comes to anything medical...sometimes bloggers can be a little dramatic, I think they call it literary license.

So tomorrow will be my 1st EGD.  Totally a messed up way to spend Halloween.  Thankfully it is my ex's holiday this year, so I don't have to worry about the boys.  I did ask my new Dr. if she planned on dressing up.  Thankfully she said no, but the nurses might.  Great nothing like twilight drugs with people in costume. Are they trying to ensure a bad trip? It sounds pretty straight forward, no eating after midnight.  Check in at 7:00, procedure at 8:00, I should be on my way home by 9:00.  That will be the time where I watch horrible daytime TV and ponder the results of my latest procedure.  She said she will probably know if it is cancer right away.  They will take a tissue sample to be sure.  Another good to know fact, I guess.  Since the call, and the visit with Dr. Gastro my stomach has not stopped hurting.  To make matters worse a dear friend came down with appendicitis this weekend.  The hypochondriac in me is pretty sure, if it is not an ulcer or cancer then I must have appendicitis.

I am frustrated and scared.  It feels as if I have been running around this cancer wheel.  Time seems to pass, and not much changes. 

The only time I feel "normal" is when I am on my bike. For those few hours a week, I am not sick, I don't have cancer, and I am hopelessly in the moment.  This life is certainly a struggle.  Most days I feel like anyone else, except for result days.  Those days stop me, remind me, hurt me, compel me to look at cancer in my life.  I don't do well in this space.  I will be returning to the oncology office in the next few weeks for a new infusion therapy.  My new drug of choice will be gemcidabine.  Needles and nurses will be in my world on a regular basis again.  Cancer seems to want my attention, it is however a small part of me, and I resist at every turn to make cancer the focus of my life.

So light a candle in your jack-o-lantern, and send some light my way.

Drink Water and Breathe

Monday, August 27, 2012

curbside chemo service

My new cancer treatment is oral chemotherapy.  The good news is I don't have to drive to the pharmacy or go to the oncology office.  The folks at big pharm along with Golden State Overnight will deliver chemo to a patio or front door near you.  There is something so strange about this.  I have to sign to buy Sudafed but chemotherapy drugs can be left at the stoop?

I received my "xeloda" Saturday.  I couldn't open the box.  I opened it last night and sorted my pills for the week.  Now all I have to do is take them.  There is something completely overwhelming about this next round of treatment. 

I have spent the last weekend riding my bike to the top of the world,  both literally (according to local elevations) and figuratively. I had a mind blowing weekend, I faced so many fears from my saddle, and I persevered.  Things that were hard seemed easy, I was wrapped up in this bubble of fierce joy that propelled me to and through the next challenge. My highs and lows are worlds apart they some times just leave me raw and vulnerable. 

I need to hold on to that joy and just swallow these 2 little pills.

Drink Water and Breathe

Wednesday, August 22, 2012

Not a mutant

So I have been playing the cancer waiting game. It is really quite fun and pushes patience to the absolute limit. I have been waiting to see if I am BRAC 1 OR BRAC 2 positive. This genetic mutation can lead to some hereditary female cancers (Breast and Ovarian), because of my triple negative disease and onset at such a young age, my doctors and I felt that I was probably going to test positive for this mutation. A positive result would have made me eligible for a clinical trial of a PARP inhibitor...this is some kind of biological drug that has significantly less side effects then chemo. I of course would become some what of a lab worries this drug is only tested on animals will be injured. After my extended chemo vacation (it has been since june 4th) I would do almost anything to not have to tap in again, unless of course that choice is die. Sadly I was hoping to be positive so that I would be eligible for this trial. Mutants only for this particular study, BRAC negatives need not apply.

Then I begin the search for the next step. There are lots of choices for the next chemo, the menu is like a really extensive wine list, I need to go over it with my doctor so I made the journey to Sedona today. Now I am all sorts of pissed off about starting chemo again. I am upset that I am driving to Sedona without my beautiful new mountain bike.  Who the hell drives to a place like that without their new 29er?  There are so many kinds of wrong with that picture.  Fortunately my friend Kate tags along for some much needed moral support. I have to say I have been on the cancer breakdown brink lately, walking that fine line of just had enough, I DON'T WANT TO DO THIS ANYMORE!! So just as we are leaving Prescott, a little behind schedule, I am a living breathing ball of frustration, who happens to be speeding. Damn it! I get pulled over by the VA for doing 45 in a 30. The poor policeman, I essentially breakdown, I tell him I am on my way to chemotherapy and I start to sob. I pass him all my credentials and just sit and cry in my car. The injustice of my life, my day, my cancer and now a fucking speeding ticket too. Why can't it only be a speeding ticket why does my day have all these other fucked up details that I MUST deal with? Pity party of one has fully arrived in some little dirt lot on the side of the road. Then the policeman returns, tells me he is going to give me a warning, wishes me luck with my treatment and adds that I don't need other things to worry about with so much on my plate. That of course makes me sob more, the kind man felt sorry for my story, I wanted to apologize to him for the rough start to his morning, I am sure he just wanted to pull over citizen X write a citation and get on with his day. I didn't want to be a sobbing driver pulling the cancer card. Nobody wants to wake up and feel this huge weight on their heart. The last person I want to share it with is a police officer. I was so raw an vulnerable. My friends and loved ones share this with me in there own way. Usually I run cancer light, that is the less then serious disease that is my accessory on occasion. This morning my head and heart were deeply seated in cancer dark, no unsuspecting human should have to view that with out at least the slightest bit of warning. So to the kind officer who gave me a warning today, many thanks, I didn't intend to let it all hang out.

After a good cry and a warning my spirits sort of lift. The drive to Sedona is a pretty one these days. The hills are so green. We arrive about a 1/2 our late, between the ticket and construction it was not in the cards. I attempt to be prompt but truth be told I have waited many hours in a Dr.'s office and being late is no longer one of my concerns.

We get there and guess what we have to wait. The reason I am so wound up about my cancer is that in addition to some new nodes on my last pet scan, I have had considerable swelling in my neck over the course of the last month. It is uncomfortable and just the knowledge that my disease has this visible presentation just freaks me out. I feel pretty good, could my health turn quickly? I don't know, they don't know. Living in this predicament makes it hard to live in the moment. I don't want to face my cancer, I want it on a back burner, preferably not in my life. When I have to make a chemo choice, I have no other option then to take a hard look at this portion of my reality, it is not a place I want to reside, or give to much power to. Yet I have to honor the cancer in me for it too is a part of my journey. Acceptance comes to mind, and I breathe. Dr. Lindquist pops in and it is the usual routine. Exam, measure, talk, blah, blah, blah....possible drugs, possible side effects, this one is promising,so is this one....choose your cocktail and choose wisely, it is only your life. So the winner is Zalota,  an oral chemo drug that I can take from home. It can be shipped directly to me, I must be there to sign for it though, a very highly controlled substance. This drug should be more mellow then the other chemo drugs I have taken. So once the authorization comes through I will be moving forward with my treatment. While at the oncology office I need to have my port flushed and have some blood drawn. They don't like you to leave with out sticking you. Lately it has meant double pokes for me, my port hasn't drawn blood for the last 4 visits. I frankly don't even care about the extra needle poke, I am just a little numb. Chris quickly and painlessly accesses my port, the nasty flush of saline hits my mouth, and my port miraculously draws blood. I don't look because I don't want to jinx it, so I wait patiently for him to fill the 3 vials. Kate is smiling, we needed this little sign that maybe after an emotionally laden day some things were going to go our way.

So far from where I need to be..... Drink Water and Breathe

Sunday, July 22, 2012

It has been far to long

I don't really know where to begin or how to catch up. I have allowed my blogging to fall painfully behind. It seems like I have a constant dialogue in my head of things I need to blog about.

There have been two more benefits for my family. I have been unable to write the Thank You post for these fun gatherings and the people and businesses that made them possible. These posts will come soon with links to all the amazing businesses in our community.

Life has been very busy. I have received a total of 6 cycles of etoposide/sisplatin chemo therapy. My last treatment was on June 4th and 5th. I have had amazing people in my life step up and take me to all of these treatments. My chemo "dates" are bittersweet and intimate. It is a lovely time to catch up with some of the most amazing people in my life. Usually includes a great lunch, followed by some light retail therapy in Sedona. Dinner is out at a fabulous restaurant, and well if I can keep it down we have accomplished alot. Day 2 is a little more chill with a nap a nice lunch and a drive back home over the mountain. I have been on a chemo break. My baby T cell or white blood cell count was low. I was exhausted. It was summer time and I wanted to take the boys on vacation. The plan with Dr. Lindquist was to schedule my next PET scan for July 18th, review results, then plan chemo accordingly. We tentatively scheduled chemo for the 23rd and 24th and I lined up a couple of fabulous dates.

So I planned a vacation in Kauai, Hawaii for my family. We spent a week on the garden island exploring, snorkeling, hiking, kayaking, eating, playing, and just enjoying one of the most beautiful places on planet earth. My boys are so grown up these days, they were great traveling companions. It is a joy to watch them grow and take in the world around them. We had the joy of snorkeling with sea turtles, and more beautiful fish then imaginable. The "Aloha" pace of the island was so welcome. It was a complete 180 from the pace our family has kept since the cancer diagnosis. We needed to slow down and take in some beauty, talk about love and the things that are right in this world. This is easier to do when you are in paradise, add some shaved ice and a perfect sunset and the road is paved for everyone. We were just a beautiful family on holiday. Cancer didn't go with us to Kauai we all needed the vacation.

 Also during my chemo break I made a solo trip to Newcastle, CO to visit some dear friends. There is nothing like a 10 hour road trip for some quiet time in your head. Driving through the reservation, Monument Valley, Moab, only to arrive in beautiful Colorado is a spectacular back drop for some serious contemplation. My bike went with me of course, so it has officially become an inter-state love affair with my bike :) I will be making another trip up north in the near future with my boys for a wedding.

Another highlight of my chemo break was a visit to my youth. Myself and 3 dear friends went to see Van Halen in concert!!!! Fun wild good times! Eddie Van Halen can still shred and we are contemplating Def Leppard and Poison in the fall. Now that I have cancer I am comfortable outing myself in regards to some of my musical tastes.

Now the part you have all been reading for, the results from my PET scan. They are not as good as the last results. I have 2 additional nodes that have lit up on my left side and the other nodes have stayed consistent. That is the bad news, the good news is there are no tumors in my major organs or bones. The long and short is this is not what we had hoped for. I knew the journey would continue as I can still feel the nodes in my neck. What does this mean? I don't know I have been trying to wrap my head and heart around it. I am scheduled to meet with some more specialists on Tuesday. A place called T-gen, I am essentially adding them to my team. They do a lot of cutting edge research blah blah blah blah blah....I was pretty upset when I got the call. I was just coming off vacation. I have spent the last 6 weeks having fun and LIVING, now AGAIN cancer wants my attention. One would think I had given cancer enough over the last few years. There is nothing more frustrating then living like a healthy person, and scans tell you that you are not. I have been trying to wrap my head around this since Friday. I had a healing session with my friend Christi, followed by Yoga, time spent with dear friends, good food, laughter, an 18 mile bike ride a weekend full of love. So tonight I sit here and type, more centered and grounded then I have been in awhile. With a heart full of love and gratitude I try to sit in this moment and am thankful for all the healthy things that make up me. May I honor those, and my cancer as they all shape this blessed life that I am living.

Drink Water(with lemon) and Breathe

Sunday, April 15, 2012

Giant Thank You !!!!!!

Since my last post I have been busier then usual.

I had the honor of attending a Lovefest/Benefit for my family. The number of people in this community who have extended love to my family during this time are really too many to list. I however feel a burning need to recognize and thank some of these amazing women. I do not however want to violate anyones privacy so unless you are a business it is first name and initial only.

First up on the list are the amazing organizers of the event Melanie T., Tara L., Leslie C, Kate P. and Jen B. These women have hearts full of generosity and love. They were also able to put together one of the most amazing, fun, bliss filled night of love benefit/bash. I am honored to know and love each of you! Celebrations are taken to a whole new level when you ladies are involved.

The night of the event there were a few ladies who donated their time and services during the event to make it extra special. Cina M. massaged attendees into chair massage bliss in one room. Tara S. shaped brows to perfection, for literally the entire evening...only leaving to attend her silent auction bids. Carrie from Nyla D' salon did temporary hair painting. Andrea C. was doing tarot card readings in another area, I did not even get a chance to meet/thank her she was so busy. Thank you so much ladies for donating your time, skill and love to make this event extra special your gifts are amazing thank you for sharing!

Kerry C. thank you so much for coming and being my wing-woman. Your presence means the world to me.

I am sure you all noticed the AMAZING flowers throughout the entire evening, they were all donated by my favorite farmers Cory and Shanti of Whipstone Farms. Apparently they not only excell at growing the finest vegetables in the land, they also grow the most amazing flowers as well. I love local, and this farm is all things good! The skill to arrange all those lovely bouquests was none other then the artistic and talented Leslie C.! Beauty and love on so many levels!

Our community is full of great local businesses who extend themselves on a multitude of levels to give back. Here is a list that donated directly to this event. If for some reason anyone notices I missed one please let me know.

There was a multitude of generous donations given by amazing families throughout the community. Hand bags, jewelry, sunglasses, pillows, wall hangings, books, dresses, hand made crafts, timeshares, helicopter rides, books, furniture, massages......The list is so great and the generosity of those giving is hard to express. Many ladies went home with one of a kind earrings and bracelets made from donated bike tubes, extra love lives in each one of these pieces. The tubes have been all over our beautiful trails in Prescott National Forest.

The generosity of the women who attended and bid on all the items was unbelievable. Many people have donated who were unable to attend. The ripple effect continues as more people here of my story.

Trying to blog about the love and energy that was shared that evening is hard. The layers of love are like ripples in a pond. Imagine the people closest to you putting their love into an evening. Then they have the people closest to them give and pour in more love. Each one of them reaches out to those close to them and more love gets poured into this amazing love/fest. It just goes on and on. It has been a couple of weeks since the night of the benefit and the love just keeps washing over me in waves. The kindness and generosity of so many is quite a humbling experience.

Women from different times in my life showed up to show their support. Some I have known for decades, others not so long. I can't get over how many people attended and how amazing all these women are. Many women I didn't know, were friends of friends who knew me through my blog. I can not say enough good things about the ladies who showed up for this very special evening. The love and generosity of so many have made such a profound difference to me and my family.

I need to sign off I have so much more to say.........

with love and gratitude

drink water and breathe

Tuesday, March 27, 2012

So much love....

Where am I these days??? The mind is a little foggy so bare with me. For those of you who I am not friends with on Facebook, the good word from the oncology office is nodes are smaller!!!! They have not completely dissolved as I had hoped for but smaller is better, at least in this instance :)

My last chemo was scheduled during spring break. I could go on and on about the levels of lameness associated with the timing of cancer treatment. This week was particularly difficult because a couple of my closest comrades were out of commission for a variety of reasons. Now by no means was I without support.

My friend Lauren drove on day one. We spent a fun day at the oncology office. I taught her how to play cribbage (the finest card game in the land). We looked at magazines, snacked, I may have even napped. Funny as I type about this day that occurred 2 weeks ago I am unable to re-call crisp details about it. Chemo brain is settling in. I remember we had a great lunch from a euro-deli and had a great day of catching up. We also talked about books as Lauren is one of the most brilliant women I know.....the only one I could recollect is "Man's Search for Meaning"....hmmmm I wonder if it comes in a gender appropriate version. I arrive home to my friend Salli bringing dinner. Day one of the cycle draws to a close, I take some anti-nausea pills to ward off any potential side effects and hit the hay. A chemo day without vomiting is a good day.

Amy arrives bright and early for day 2. When I say early I mean on time and when I say bright well I mean REALLY BRIGHT. My friend Amy is one of the happiest people I know. Sadly I am not much of a morning person and sometimes I have to beg her to lighten up on the cheer. Day 2 is much like day 1 super fuzzy for me. We get some coffee on the way, or do we??? I think yes but I can't be sure. The details are not super important. I teach Amy how to play cribbage and we get some Chinese take-out for lunch. We end up sharing with 3 other patients, my heart aches to think they don't have anyone with them on the journey, or at least for lunch. I am just grateful for so much love. I spend the afternoon napping, while Amy reads my new book "Crazy Sexy Cancer" (A gift from Rachel left on my doorstep during day 1 with some kale love chips, again so much love....:) Then day 2 is over and Amy drives me over the mountain. I am high and low, steroids, chemo, adivan. The drugs leave me pumped up and pulsating. My body feels like intense vibrations, my pulse is amplified by the medication, I am me and not. So hard to explain. I have some homemade broth delivered when I get home, the boys get dropped off and spring break begins.

Overall chemo flows much better then the last time. I spent time focusing on healing. I listened to my meditations while in the chair. The funk seemed to last for about a week this time. The boys went to work with me a couple days and then got to spend time with their friends. I am so blessed to have such amazing kids who can just roll with what life throws our way. I am equally blessed for our family to have such amazing friends to step in and help out. The frustration I feel when I am unable to rally to do the things I used to do make me crazy. I also felt a little weepy and whiny about not having the health to do fun stuff on spring break. We were supposed to be skiing in Grand Junction, not couch surfing. Then I take a breath and accept that this is where I need to be I hug the boys closer and decide to introduce them to Lord of the Rings. If I am unable to take them on epic vacations then at least I can introduce them to some quality epic cinema.

We were also blessed with an end of season snow blizzard. So we had to dig out the brand new sled. I love to get out when it is snowing so Mason and I went to breakfast the first morning. I love driving on the quiet streets, with trees bent gracefully by the weight of the snow. The sound of the tires crushing a path on a million little snowflakes, and the cool crisp air is so fresh. I am also hungry because we shoveled so much snow. We had a delicious breakfast at the Dinner Bell with my dear friend Barbara. Life is good and well there is so much love....

The boys hoped and prayed there would be a snow day on Monday effectively giving them an extra day for Spring break. Their prayers were answered and we woke up to about 18 inches of snow. I called in snow to work and took the kids sledding. We spent a super fun day out in the snow with a bunch of our friends. We could not have asked for a better end to the break.

With a return to our routine I started to feel stronger and stronger. Last Wednesday I met with a bunch of my gal pals. They are making these beautiful earrings out of bike tubes to sell at a benefit for me later this week. Now these women are just amazing gorgeous through and through. We spent the evening crafting, enjoying some yummy food and beverages. I am at a loss to explain how much love I have in my life. It brings tears to eyes and yet lifts me up simultaneously. so much love.....

Later this week I will be attending a benefit held for me hosted by some more amazing women. To watch my community come together and support my family during this time is awe inspiring. I am so humbled and honored to have so many wonderful people in my life. Not to mention I am so excited to just go to this party, hard to feel down when there are so many wonderful things going on. The pulse or buzz of chemo has nothing on the love buzz I am feeling of late.

It is so late and I need my rest...

Drink water and breathe....