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 rat...no worries this drug is only tested on humans...no 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....

Sunday, March 11, 2012

Preparing to tap in

Today is day 21, of my 21 day cycle. Which means tomorrow is the beginning of my second chemo cycle. I could try to compare it to my menstrual cycle.....but it has been a long time since I had one of those too. I have to say it has been an interesting 21 days. My health has had peaks and valleys. Some experiences are new, like the vomiting, and nausea. Others felt familiar like fatigue, stress, and anxiety. Then there were the countless acts of love that came into my life, from a million different angles at the most unexpected times. I can't get over all the kindness and generosity of so many around me. I received a hug from Garchen Rinpoche and heard him speak for the first time. I was able to get out on my bike twice, once with an old friend so dear to my heart and again with a new friend. Both rides hold a special place in my heart it is like biking past and future all in the present....I was so grateful to have the strength to ride. I had a delicious potato, ginger soup delivered to my door. Wonderful meals with friends. My boys well they are just a blessing that never ceases to amaze me. I had a wonderful visit from Liette and Matt. Nothing says love quite like a Lego tree house, if you have doubts, just ask my boys they will tell you. I have been blessed with someone to help with the housework this week. Another amazing gift. Life seems busier then ever and I am so fortunate to have so many willing to pitch in an help out in so many ways.

So my thoughts are circling in a cosmic way. The blessings that are in my life are all about being connected. My cancer has paved the path for so many to share in this profoundly human experience. There is so much goodness and light that surrounds my diagnosis that at times it feels surreal....can I really be sick? The mind is a powerful thing. If my hair wasn't thinning so much it might be easier to think this was dream. But today is the end of my cycle and well tomorrow is day 1...again and what exactly do I plan to bring?

I guess my theme for my next round is eternal. My friend Christi mentioned it to me tonight when I had my Chinese Medicine session. Her thoughts were directed towards never ending nature of energy itself. The shelf life of my body is still to be determined. The energy that is me, well that goes on forever. If you doubt this just pause for a moment and think of someone you love. The energy of that love is with you at this very moment. Simple, right? How do I channel eternal into tomorrow? Through my breath. I need to accept this treatment as someplace so necessary, it is exactly where I am suppose to be. With my breath honoring that in me which is everlasting, it feels kind of tricky because I need to be in the present moment. Thankfully any shortcomings in my spiritual aspirations will be covered by the fact that my treatment takes place in Sedona the known vortex capital of the world. I am sure that will cover any gaps in my own process :)

So my friend Lauren is going to be behind the wheel and the party starts around 9:30.

Keep us in your thoughts, share some love with those around you, everyone can use it.

Drink water and breathe

Thursday, March 8, 2012

kinks with the donate button

Long ago I admitted to being a ludite, or I may have been called one by my brother. There was a kink with my original donate button, and it has since been worked out. If you tried to donate and were not successful, it was due to problems on my end. I do believe those problems have been worked out.

With love and compassion,

Drink water and breathe

Tuesday, March 6, 2012

Back to being me.....

After nine of the longest days of my life I started to feel like myself. It is about damn time. Let me see where did I leave off....

Oh yeah day two of chemo, Jen is signed up to be my DD. I wake up exhausted...late night blogging, steroids, chemo, the emotion everything involved with day one left me feeling like my body was a war zone and it was not pretty. So I make my smoothie, get my supplements and we hit the road. After the completely crippling effects of day one I have no idea, how I got out of bed, and decided to return to Sedona for day 2. I just do, I can not explain it but I just go.

We show up a few minutes late......that's okay because I am not really in a hurry today. We explain to the Dr. my horrible day and night so she switches up the meds a bit. Then I proceed to doze off and on for the rest of the day. I read a few magazines. Jen heads out to get lunch. I nap a little. We eat lunch. We chat some more, I nap some more and before you know it day 2 is pretty much over.

The change up in drugs seems to work I am groggy as hell but I am not puking...three cheers for the pharmaceutical company.....rah rah rah. We decide coffee is in order for the ride home. So Jen and I head into Sedona, we come across a cute little coffee shop near the post office. We grab our lattes to go and stroll around. After chemo the simple, normal things feel priceless. So we wander into a hip little boutique and peruse the sale rack. They happen to be doing card tarot card readings in the back room so I sign up for one. When you are in the vortex it seems like the right thing to do. Sadly I have chemo brain and don't remember all the details. I believe I pulled 4 man of world cards (There apparently are only 4) one related to feelings and how I must allow myself to feel everything, another had to do with masks...I would be changing them often...I needed to always remember which one was the real me....one had to do with organization and accomplishing any task...another for some kind of transition....then the universe card...another big change...and for the life of me I don't remember the last card. I wish I had taken a picture of them.....It was kind of fun, it surely beats puking my brains out and I needed a little encouragement from the other side :)

So Jen and I head home, I think we go over the mountain. I am not even sure the drugs kind of just created a blank spot in my brain. We get home around 4:00, Steve drops the boys off sometime later. I really don't have much recollection of that night at all. I think Amy came down to help with the boys and we all pretty much turned in. I can't believe how vague this day is in my memory. Maybe it is like childbirth....if you don't remember the details it will hurt less when you revisit that space.

The 3 days following chemo I return to work. The Wednesday following I wake up slow and plod through my day....it is like my brain has been turned into soup and every simple thing requires all my concentration. I had no appetite and a splitting headache. Thursday was pretty much the same only in addition to the other side effects I also had puffy eyes, always a nice touch when you work with the public...no I have not been crying all day even though I look like I have been. Friday, I almost called in....but my weekend was around the corner....I made it through with a little nap on the booth. I could not shake the extreme fatigue, it was never ending. The boys were scheduled to be with there Dad for the weekend. So I rented a ton of movies to prepare myself for some extreme couch surfing. The headache is what really wears me down....fall asleep with one and wake up with one just sucks. That headache was accompanied by low level nausea...the kind that says you might need to puke. This combination prevents me from drinking my smoothie or taking my supplements (I manage about half of them). I just listen to my body and ride it out. I manage to squeeze in some gentle yoga on Saturday in hopes of centering my body and mind. It feels good but the headache persists. I spend the remainder of the day on the couch.

On Saturday (2/25) I was an emotional mess. The weepies returned I did not want to be sick, and home on the couch. Thankfully Kate popped over at the right time, I cried some more. Apparently it is more effective when you cry with someone, or at least that particular cry doesn't get stored inside but is set free. Somehow shared tears lighten the load a bit. So we run out for some more movies and a little Chipolte and it is back to the couch for ...ready....set....heal..........
Sadly it doesn't quite happen that way but a little company goes a long way. Amy pops in later to watch movies with me and I doze in and out of my films.

So I forgot to mention a totally amazing part of the longest week ever. My support system has been working overtime. Layla comes and refills my water bottles for me. Melanie and Leslie come to my house on Friday while I am at work and do all my laundry and clean my apartment. I come home Friday to a clean apartment, laundry done, healthy food in the refrigerator, and flowers on my table I am so blessed. The extra help allows me to come home and rest in complete peace, no mommy guilt of chores not being done.

The next amazing part of the longest week ever is a healing meditation that I organized for Sunday. I am working with a woman that practices Chinese medicine. I had a session with her early in the day, it is a combination of chi gong and acupuncture and some other things that I just don't have the language quite yet to explain. Then we had a group energy ceremony with some of my close friends, in a guided practice we gathered "chi" and showered it on me. All I can say at this point is that love and intention are very powerful things and by Sunday afternoon, I felt like I was on the mend. I went home after my session and really rested.

Monday and Tuesday I felt stronger and stronger. By Wednesday of last week I was ready to get out on my bike for the 1st time in 3 weeks. Oddly I felt just like me it was like a switch had been flipped and I was back to normal. I am tired in the evenings....I am a single mom....that is the norm.......We had our last weekend of YMCA Basketball for the boys. That of course means party at Peter Piper, which of course can wear down the heartiest of parents. Corbin has another cold/cough so we were at the doctor yet again. The good news is his cast has only a few more weeks. Life has a magical way of pressing on.

I managed to squeeze in a ride over the weekend as well. I am honored to have such an amazing riding community. For those that don't know my friend Tina, with the help of others has designed a ladies riding jersey, with all profits from the sales going to help my family during this time. If you come to P-town for the Whisky Off Road you will see a bunch of amazing women sporting these jerseys, or maybe you will just see them out on the trail. I am humbled daily by the immense out pouring of love that is showered on me and my family.

So I am focusing on honoring the healthy parts of my body, and healing the other parts.

I have chemo again on March 12th and 13th.......not quite the ski trip I had planned for spring break, but it will do.

I am filled with so much gratitude for all the people that are sharing this journey with me.

Drink water and breathe.....

Monday, February 20, 2012


What exactly does that mean and when do you arrive?
For some it the act of riding, not driving, that makes one vulnerable......
A needle into my brand new powerport makes me vulnerable........
Starting chemo for the second time makes me vulnerable......
Asking someone to hold my hand makes me vulnerable..........
Someone showing up to hold my hand makes me vulnerable.........
Receiving love and the gifts the universe showers down on me makes me vulnerable.......
Crying with my children makes me vulnerable........
Vomiting makes me vulnerable..........and doing it for hours on a car ride home well there are know words or tears available to quite explain that journey.
Needing someone to help with the boys makes me vulnerable.....
Coming home to dinner and filled prescriptions makes me vulnerable...
People showing up to be HERE for my family makes me vulnerable........
Being given the most amazing piece of furniture for my healing altar makes me vulnerable........

I could go on forever.......

Then there is this magic pill that I believe is called Zofran which eased the side effects of my chemo at about 6:45 approximately 2-5 minutes before the boys came home. The universe must know that I must be a little less vulnerable and raw with the boy........I am sure they can take it........but I am a mom. So I sit down and have some soup and try to piece together there super fun exhausting day with friends. Vulnerability has left me with this soft place in my heart that sees every moment as so precious. I am sad to see them go to their dad's, I am blessed that they can. All I want to do is hold them and explain that the future holds unlimited possibilities for each and every one of us. Somewhere in all this vulnerability resides peace and love.

Needless to say chemo started off smooth. I spontaneously cried as they accessed my port, not from the pain, but it is kind of like a port of entry. Not like losing your virginity, but a crossroad of probably more magnitude in so many ways. This is a beginning of a new phase of healing in my life. Cancer treatment is a small part, I am creating through my vast network of love and support........a mind, body, nutrition program to make possible my complete healing. Thankfully this is a long project and I look forward to each day being better then the last. That means that blogging may go on forever.

So back to the facts. I get super hydrated first. Giant bag of saline with a diuretic in it. The goal is hydrate and pee. Dani steps out and brings back a yummy lunch from the New Frontiers Deli. We eat and play cribbage to pass the time (score me 3; dani 1) Cisplatin my first chemo of 2012 likes to camp in the bladder and do more destruction then good to to ward off this side effect they encourage me to "drink tons and pee" (the first title of my blog:). I get a little "creeped" out by the chemo but roll with it pretty well. The second treatment is etoposide and it is drained and gone before I know it. Near the end I just start to get anxious and my sense of smell kicks into hyper drive. The thought of the heprin and saline flush makes me want to vomit.

The nurse kindly draws saline out of a big bag, this removes the preservatives that I can taste when they flush my port. The saline prevented me from having "another" incident at the oncologists office. My near fainting spell the week before along with my chatty nature is already putting me on the radar with my new office. Brenda the plebotomist who drew my blood last week was all to ready to pass me on to the nurse for my new labs once she heard I had a port. Puking in the office, well that is just a little to intimate for a first chemo date. So once I am unplugged we beat feet out of there. Now mind you it is 4:00 PM and we had been there since 8:45..........it was more then time to go. We grab a puke bag for the road, it is kind of like self-fulfilling prophecy at this point, some would call it foreshadowing, I took it as a bad omen. I had no idea what Dani and I were about to endure.

I am sure the fresh air will make me better. I sit on a bench while Dani pulls the car around. I breathe, slowly, deliberately and with purpose. We drive 2 miles down the road and I say "DANI YOU HAVE TO PULL OVER" and I precede to puke on HWY 189(could be wrong) between Sedona and Cottonwood, anyone who know Northern AZ realizes this is a busy road, it is not the autoban but it could be it's redneck cousin. So to the din of non-stop traffic I puke, Dani rolls the car forward in 10 foot intervals so I could have clean spots to puke. Somehow the medicine made my nose into a superhuman sniffer......I could smell the exhaust fumes, the bile in my stomach, the chemo on my tongue (totally crazy), the odor of the salads we had for lunch. Vomiting would be number 2 on my list of medical shit I just can't stand. Then I get flashy I am burning up then I have the chills. I get in the car we drive a few more miles and do it all over again. This side effect sprang out of nowhere and lasted until HWY 169 (Cherry Rd.) It was approximately 2 steady hours of this nausea and chills. I took a pill before I left the office, sadly I left it at the 1st puke station. Had I know then how much I needed it I might have gone through my own vomit to find it. So I go from exhausted with my eyes closed just focusing on my breathing, hot and cold intermittently to puking on the side of the road. The fucked up part about this whole situation is that I AM UNABLE TO DO A DAMN THING ABOUT IT. I have to ride it out and see what is on the other side. Do you know what encourages you to vomit more? The thought of doing it all over again the next day. Well guess what that is where vulnerability came into play. I cried and puked on the side of some highway today, I was in no state to provide myself with what I needed. I did not have to, my body was doing exactly what it needed to be doing, my friend Dani Baker was doing what she needed to be doing to support my body and me well I was just along for the ride. Dr. Lindquist ordered me suppositories to help with nausea. After a ride like that I would stick many things up my ass if it meant I would stop puking!

I was thankful for the reprieve given to my body from the Zofron. I look forward to my next treatment tomorrow as it is another day closer to healing. I sort of feel back to normal with fatigue and a slight buzzing under the surface. The buzzing could be from the chemo or the royal jelly I am taking........ I may never know but it is always nice to have a mystery.

If you wonder why I am blogging late after a day like today, well I am sure it has to do with the steroid high that I am on.

Embrace your vulnerability......

Drink water and breathe

Wednesday, February 15, 2012

Life presses on

How do I express the chaos? I wake up, feed the boys, make a smoothie, dress myself, dress the boys, drop them at school, drive to chino, work, leave, pick up boys, go to scheduled sports/or not, home, home work, dinner, shower, bed. What is missing from that rant? fun, exercise, meditation, yoga, reading, blogging, cleaning, dating, BIKING. Then of course there is that new category that must be addressed....the CANCER time...it supersedes other parts of the list because it is IMPORTANT. Then of course there is the other unexpected life stuff that is not on the list it kind of comes out of the blue.........something like Corbin breaking his arm at the skatepark.

That is correct Corbin in an attempt to master a "nose manual" on his scooter, managed to fall in such a way that he broke his radius and ulna. Now this is not my first child with broken bones as Mason fractured his wrist in August last year. Mason's break was a little more severe, but I was not "blogging" much then so the pseudo real time details are not available. So Sunday 2/12 I get a call from Steve saying I think Corbin broke his arm we are heading to the ER. Really??? I had spent all Friday afternoon at our lovely YRMC. Is it really necessary for me to spend a Sunday there on the same week? I show up and Corbin is in a wheel chair and he has worked himself up into a frenzy. Corbin loves Dr.'s and medical stuff just like I do. He has a pretty big knot on his arm and in quite a bit of pain. Mind you he broke it and Steve probably had him at the ER 20 minutes later...it might have been less. So poor Corbin is crying with Mason chiming in occasionally "I broke my are worse then that", apparently brothers don't let up when the injuries don't seem to be too severe. Corbin is so upset he won't let the nurse take his temperature orally. He can be a bit dramatic, so she puts it under his arm......totally breaking the rules, but it's not like he has the flu. Then he gets wheeled into the back and we wait. A tech comes from radiology and takes him back for an x-ray. He can barely move his arm for the x-ray, he whimpers through the entire thing. We are back in the room and we wait for the Dr. to read the results. It is broken, but it does not need to be "re-set". This means all they do is splint it up and refer you to an orthopedic specialist for a hard cast later in the week. Super fun way to spend a Sunday.

Great! at the time I get this news I figure what else do I need to do this week? Oh yeah schedule my first chemo, get a cast on Corbin, and the regular crap I do every day. The question is how much can you pile on a plate? How far do you bend the branch? How many needles break the camels back (that one may not make sense)? The answer is "IT WILL TAKE MORE THEN THIS".

I found out on Monday that Corbin's appointment would be Thursday. I was hoping (sort of) to start chemo on Thursday. Then I spoke with my oncologist and I asked her if it would be okay to start on Monday 2/20. I don't want to hurt my chemo odds by waiting to long, but really what is 4 more days at this point? I think it is 4 more smoothies and supplements to support my body and maybe I will be able to squeeze in a bike ride before the chemo show begins. I also need to have Corbin in a hard cast. So I breathe and let it all fall into place. Dr. Lindquist recommends a chemo that might need some extra approval Monday is going to be a good start. Kate is on board to take me for day 1 and Jen is on board for day 2 and slowly it is all coming into focus.

I will start chemo on Monday 2/20. My regiment will be a combination of etoposide and sysplatin given on day 1 and 2 of a 21 day cycle. In English that means I will be tapped in for approx 5 hours on Monday and Tuesday of the 1st week, with week 2 and 3 off. Then we will repeat the cycle 4 times. We will monitor how my cancer responds at that point and go from there. This regiment seems pretty manageable. I may need a neulasta shot on Wednesday's following treatment to boost my immune system but I will be able to have that administered in P.V.

So that IS IT after searching far and wide for the right Doc's and the drugs that I think are best for me this is where I have arrived. I don't know what the side effects will be. Probably much like my last treatment. Although all the natural herb and supplements will better support my body through this journey. I am sure I will know by next week.

Today is kind of a bitter sweet day, I received the confirmation for my Whiskey Off Road Race entry. I was able to squeeze in a quick hike at the Butte today but am not able to ride until my port heals up. I don't know if my body will be able to ride the race at the end of April..........I guess there is so much that is undetermined, and I can't get over how quickly things can change. Tomorrow I go for some kind of heart test to ensure that it has not been damaged by the prior chemotherapy. I guess that is important before I start treatment again.

I need to keep moving forward, loving, grateful, and blessed with so much goodness surrounding me and my family.

Drink water and breathe................

Monday, February 13, 2012

Sedona success!!!

Life is always a whirlwind in my world. Cancer just throws more stuff into the mix, some really unpleasant and some really great. For all of us life continues to go on, until it doesn't. So I am a motivated metastatic cancer patient.

The good news is that I have decided on a doctor, Dr. Lindquist was the fit I was looking for she is caring, hopeful, and super smart. She understands the specific nature of MY disease. I met with her on Tuesday 2/7 for approximately half an hour. We talked of clinical trials, she wanted to contact her colleagues to present my case to see what they would suggest prior to a final recommendation. This makes sense to me. Gather as much information as possible, then make a choice. While waiting to here from all the who's who in the breast cancer world it is time to prepare for treatment. Dr. Lindquist orders a port, some heart test, and a TON of blood work.

So Gina, my oh so amazing driver for the day gets to watch me fill like 8 tubes of blood. I start of like a champ thinking this is going be just a few tubes. I talk and talk, and then I watch her keep reaching for tubes and I see how many she has left to go. Then my ears start to ring, my vision gets blurry I am cold and clammy. Brenda the plebotomist calls over a nurse, just in case I faint. The new onc office is kind of crowded, there are 2 women waiting to have their blood drawn watching my drama unfold. It feels like there are people everywhere nothing like making a GREAT first impression. I fill all the tubes, staying conscious the entire time, it takes FOREVER. When I finally return to a normal state, I make my way to Richard the scheduler and I am booked to have a port placed at the YRMC Cath lab in Prescott Friday 2/10. Gina and I leave the appointment much closer to a plan and I feel good about the progress.

Thankfully Jerome is strategically located between here and Sedona. We stop at this little restaurant called Quince for dinner. I had the best Ahi tacos, loaded with pomegranate, mango and jalapenos. Spending the day with Gina was just what the Dr. ordered, it takes a special person to walk by your side on a day like this and G well I just love you. Thanks for being there for me.

For two days I return to work, like a normal person.

Friday is procedure day. I wake up take the boys to school, come home, shower, do some laundry and again drink my saliva until noon. Jen is my chariot driver for phase one, she is also my go to for the boys. The hospital was kind enough to warn me ahead of time that they are often behind schedule. This confuses me, why not just schedule me later? This new cath/lab port placement fills me with a little anxiety. What is light sedation, is it like light beer? I go back for pre-op and wouldn't you know I have a super attractive male nurse. Great that will make me relax. Michael does all the pre-op questions, he thinks I am a nurse because I have got this dance down. Then I let him in on the fact that I don't like needles. A gal comes in and draws my blood for some routine tests. He wisely notices my distress and punts my IV placement to Anita the Needle Ninja. Anita strolls in and she is no nonsense. She has arrived on the scene to place an IV and she does it with absolute calm and authority in her voice. The authoritative tone is what froze me to the bed. Her physique reminded me of Olive Oyl from Popeye and she had this beret on and here lips were stained deep maroon. Anita was not a force to be reckoned with so I laid there prone no whimpering or whining. First a little local, then tube placement in vein, followed by tons of tape to keep tube in place....then the icy saline drip, IV accomplished. Why can't I get used to that? We are on our way. Now for the next part, what the hell are the drugs going to do to me? They decide it is in my best interest if I take a couple of Valiums prior to the procedure. Okay if you insist. Jen gets to visit with me after the IV until they wheel me back.

The joy about having a procedure in your home town is that you run into tons of people you know. Jamie wheels me back and we are all chatting about all kinds of stuff. I remember getting names of the other nurses Regan, Kimberly, Cheryl and of course Dr. McNaughty (McNotten), I named him naughty just so I could remember. So I am totally chatting it up with the nurses, and then there is this gap. Regan tells me I nodded off for about 5 minutes, I wake up to feel Dr. suturing my skin. I could feel the tugging, and I didn't care. I just laid there not to concerned . I think I may have gotten off the operating table and got back into the hospital bed on my own. Then they wheeled me back to post-op. Typing about it today it feels a little faint in my memory, but at the time I felt amazing clear headed. Quite possibly one of the craziest things I have ever experienced medically. My friend Anessa comes to pick me up, we stop and get me a burrito as I was starving. Again I feel totally FINE, and I can't get over it. I am able to walk, I am not really sore. This was way better then my 1st port placement, that was so awful I felt like I was hit by a baseball bat. My theory is that surgeons may be more gentle when you are not under general anesthesia.

I am so much closer to treatment.

There is soooo much more, alas it is way late.

Drink water and breathe

Monday, February 6, 2012

How many long days?????

Due to the unpleasant and painfully honest nature of my posts I would like to share two extraordinary positive facts about my cancer experience today. I had a very knowledgeable doctor congratulate me on effectively eradicating ovarian cancer from my life. Apparently I am one lucky lady to have "caught" that cancer in time so as not to worry about a relapse. Thank you breast cancer I would never had found that mass on my ovaries if it wasn't for you! The next dose of positive new came in the form of a voice mail when I got home Dr. Boresh's office called and...my brain MRI was all clear.......no grey matter jokes here please as cancer is a very serious business. I am relieved why? In my ordinary mind it feels like less is better. I have all this pain in my neck the last thing I need is a tumor in my brain messing with my cognitive ability. So that is the good news portion of this blog please enjoy and read no further if you don't want to here some of the less then pleasant details.

It was yet ANOTHER day of TEARS. How is my body able to support all this damn crying? We left p-town around 7:30 ish. I needed to be in Tucson at 12:30. The 1st set of tears started rolling around 7:40 and have yet to really stop. That was AM and now it is LATE PM this is getting old. I am exhausted but don't know if I can sleep.

Triple Negative Breast Cancer is the bad one in the bunch and those are the cards that I was dealt. Dr. Livingston seemed to knowledgable about this disease, he also was very compassionate and thorough. He spent a little over an hour examining me and talking to me. There were some harder parts like progression of disease into other parts of my body that would cause more then a stiff neck. The benefits of no organ involvement at this time. We touched base on the chronic part of my condition and the reality of a lot of treatment in my future...I am personally unable to say forever as I need to BELIEVE THAT THIS DISEASE WILL GO INTO REMISSION. If my insurance approves I am a candidate for a clinical trial for a combination drug therapy. It would be Team Bavituximab/Taxol. I am familiar with Taxol as we had 6 dose dense cycles my first go around. The difference is this time it would be a smaller dose and weekly. They say this reduces side effects and cancer cells respond differently. I am not sure how I feel about using a drug that I have already been treated with. I asked the Dr. about this and his answer was that in theory when Bad Boy Bavituximab gets added to the play book it is suppose to cut off any new vessels that might feed the cancer cells it singles them off by a protein given off by these new bad vessels? Sounds crazy to me. It is also a trial these are all theories that they hope will make a difference in cancer care. If insurance approves I could be enrolled in the trial within a week 2 at the latest.

The largest difference I heard today from this Dr. and the two prior oncologists was that he recommended I do combination chemo therapy vs. single agent chemo. The AZ Oncology form I was given said essentially that there was no difference in life expectancies from either of these 2 treatment options. Single agent has less side effects then double, sounds like a winning proposition to me. Dr. Livingston said that information is correct if you lumped (no pun intended) all breast cancers together. However my illustrious triple negative status needs to have a more aggressive battle plan.

It comes down to what kind of care is going to work for my life and allow me to enjoy the things that matter most. The U of A definitely had organization and flow. I was handed a vibrating pager upon check-in. That's right folks just like the Olive Garden, that little bit of corporate charm is a reminder this is business. Lucky for these folks business is booming. There was a group of ladies beading as we walked in. I was shuttled from check-in, to registration, to the American Cancer Society, then walked to the pavilion where we would wait for my buzzer to go off then they would take me in to see the Dr. Very streamlined, very smooth, nice gardens, lots of information. I spent an hour or so with the Dr., another hour with the research nurse, and then about a half hour with a social worker that wanted to let me know she was there for anything I might need. Kate and I chatted with her about the importance of support from my community. I absolutely have to put my health above everything else this is hard for me. I am trying to plan how best to do this.

The downside about the U of A is that it is in Tucson. Trying to plan a weekly drive south for treatment seems rather daunting, I don't have an extra day to spare. It is however totally possible I have some great friends in Tucson along with family.

Tomorrow I made a change-up, I cancelled my Phoenix appointments for an opportunity to see Dr. Lindquist in Sedona this all happened on the drive down. She comes highly recommended so I look forward to hearing what treatment options she has in mind.

So I came home to find a gift from a dear friend hanging from my door. It is a seaheart the legend says "with a seaheart in hand the right path is always chosen" and in case that did not cover my needs it was infused with essential oils "surrender" and "believe". The universe never ceases to amaze me.

I am grateful for my many blessings and the joy of dear friends in my life.

I feel closer to peace then I have in weeks and I am ready to sleep.

Drink water and breathe

Sunday, February 5, 2012

The long and short of it.....

The crying spells have become intermittent. A few nights here, a car ride there, all day yesterday......with a few pauses for basketball and a bike ride with the boys, oh that would be a lie I even cried at basketball.....If there was a camera on me while doing laundry someone would assume that I was a depressed housewife sobbing over the endless pile. If I saw me I would call someone for help, I don't know who to call and I need to work through this and get my head on the other side. I need to let go of things that are serving me no purpose and well these tears have almost ran their course. The pity party can only be useful for so long.

I met with Dr. Zieve from the Pine Tree Clinic he specializes in comprehensive cancer care. He is an MD that practices natural medicine. Based on my reports and my financial limitations, traditional chemotherapy is the best choice with a comprehensive herbal support package to support my body while going through this process. I really like him and he seemed to understand my condition and recognized the failures of western medicine. He also recognizes the seriousness of my condition and the need to treat me. I have to find an oncologist that recognizes the need for me to have both camps represented in my next round of care.

My neck is still stiff and I am still searching for the right doctor. Dr. Vu my old oncologist was without answers and a plan. He also REFUSED to work with Dr. Zieve in anyway, "it is not proven", kind of failed logic when the "proven" plan has me walking the cancer road again. Thank you Kate for going with me I could do a whole post on this crazy visit.

I met with a Dr. Boresh in Scottsdale, a little more bedside then Dr. V but I am still not sure same drugs, same side effects, not a lot of hope. He did have the ability to communicate to me that care changes from adjuvant (original disease) to chronic care(metastatic disease). He kept talking about how long people are able to tolerate this chemo or that chemo. He mentioned Zolota as the best transition chemo (this totally sounds like the gateway drug to me). It is oral chemotherapy and the side effects are mild...mouth sores, and painful inflammation of your hands and feet. Sounds like a nice transition to me, no needles and IV's those come later, once your "in the program". Patients can tolerate this chemo for a year or more???? This is the part that confuses me, what no end date? Apparently I am naive in the cancer world, metastatic disease means = chronic disease and the care well it is chemo for life!!!!!!!!!! with a few breaks for holidays and vacations. How gracious of this disease to give me time off..........no wonder I can't stop crying this just sucks! So I sit in this plush rocker and I rock back and forth in this super nice Scottsdale office and I listen and I rock. There is no physical exam apparently my condition has become an oral history....just a story backed up by exams and reports......surreal does not do this justice. Thanks heavens for my friend Lara sitting with me asking questions as I rocked and processed. Dr. B says I need a bone scan and a brain MRI apparently a pet scan does not show brain tumors (fabulous) or bone mets (super). These additional test will give him the "COMPLETE" picture. We always like to know what we are dealing with. So don't get me wrong Dr. B is nice, seems to be good at what he does, has a nice office he offers the same menu choices as Dr. V, only his office is a couple of hours drive away. I want more in a Dr. maybe that is not realistic, but I want to "feel" like someone "believes" in fighting this disease with me.

There is so much more.....but mom duty calls.

Tomorrow I head to the U of A to meet with Dr. Livingston (not to be confused with the seagull variety:), he comes highly recommended with all the papers. Tuesday I head to Scottsdale to meet with Dr. B and Dr. Kato (perhaps he is the side kick to a superhero I could sure use one of those). I am confidant I will find the right Dr.

The timeline is roughly 4 weeks from surgery, with sooner being better then later... I better get moving.

Drink water and breathe.....oh yeah and my herbal smoothie too...

Tuesday, January 24, 2012

Giant Tears

I now have insomnia. My neck is stiff or I have a stiff neck. It feels sort of hot and angry kind of like me at this moment. This present attitude reflects my complete and total lack of presence but only for a short piece of time maybe longer if need be. I spoke with my surgeon and the biopsy results conclude that I have METASTATIC BREAST CANCER..... there are no words to describe the tears that are streaming down my face at this precise moment. They flow full of hot uncertainty, and they just flow. These are not little tears they feel like giant tears full of pain, hurt, sadness. They are also filled with so much love for my ordinary simple life. A life once again threatened by this awful disease. A long time ago someone told me that tears wash your soul. I always thought this meant pain and old hurts. I am 37 years old and I have cried my fair share of tears. Tonight they just feel different. The tears just well up in my eyes and then they roll hot and slow down the front of my face and the tears feel so big and so large it is as if a single tear reaches all the way from my eye to where it splashes on my chest. Then it seems like I could not possibly have enough liquid left in my ducts and in that exact second another burning hot tear rolls out ever so gently down my entire face to my chest. It is going to take quite a bit of these tears to wash away the sadness of my heavy heart. So here is hoping these tears stop, if only to allow me to get some more sleep tonight. I am pretty sure tears are not a treatment option if they were I would have this wrapped up in spades.

Tomorrow I put on my game face and meet with a couple of doc's and the cancer journey begins anew. I can't imagine it will be the same as the last time, things never stay the same. I am sure however they have not re-invented the needle since my last stint which means that it is still going to suck.

after a cry like today I need the hydration

drink water and breathe

Thursday, January 19, 2012

2012 can we start over????

The New Year has been off to a somewhat crazy start.

I registered for my first mountain biking race. The Whiskey Off Road is twenty five miles (+/-) of grueling road and trail through our lovely Prescott National Forest. Kind of a big step for me as I only got back on my bike around April of last year. I am so thankful for the awesome ladies that I am fortunate enough to ride with. You all are an inspiration and just so much fun!! So here is to training for the race in our playground. We are so blessed to live and ride here.


The year has started off with a cancer scare as well. I found a couple of lymph nodes on my neck swollen. I had a CT scan a few weeks ago, it is so amazing the test confirmed that I had swollen lymph nodes in my neck. I visited my surgeon, Dr. Alan Bornstein and he felt my neck and aggreed that I have swollen lymph nodes. I have swollen lymph nodes and we need to figure out why. Dr. Bornstein is kind of a no nonsense surgeon. He says there is a very small possibility that it could be nothing. Nice to know he always leaves that gap for a small miracle. I believe and pray for miracles, but with 2 cancers under my belt I am kind of a realist. He is not sure what is going on but says, "You will probably JUST need some more chemo." To which I respond with an eye roll, "JUST some more chemo?" Dr. Bornstein profusely apologizes for his wording. For those who have been down the chemo road you may find humor in this little exchange. I have a sense of humor so am not really offended. Dr. B does not lack sensitivity he is just real. He sees medicine scientifically as a tool. He looks at disease by type, progression, and tools to treat it. He does this with minimal fluff, he is on schedule, warm and full of pertinent facts (according to him). He also leads me to feel like he gets me, as if that were relevant, I like to think my care is personalized :).

The only way to tell what I have going on is to have a biopsy. This means my return to the Spa at Thompson Peak for a little out-patient procedure. The procedure is going to be surgery light, a little general anesthesia to make sure I don't move, only 15 minutes or so in the OR. Before surgery it would be nice if I could sqeeze in a PET scan, just to make sure we have the COMPLETE picture. So in addition to working, chasing kids, biking, 2 unplanned Dr.'s appointments, and surgery I now have to work a PET scan into my already full dance card. Being over booked is not fun. There is also quite a bit of pressure associated with a PET scan. YOU WANT TO DO WELL ON THIS TEST. So I follow all the directions, no carbs the day before, no strenuous excercise (I packed in all my yoga and biking the day before). You also have to be super hydrated and you fast. Now mind you I prepared for this test on the Friday after I met with my doctor, they of course could not get the insurance approval in a day so it was tenatively scheduled for the following Monday. So this is my second prep for this test. Monday morning rolls around and I am fasting at least I can have water. The goal behind the radioactive isotopes that are suspended in glucose is that they go to your "hotspots" not your dehydrated organs. You also have to lay very still for an hour while the injection finds your "hotspots", they suggest limited muscle use during this time I guess they don't want your muscles using up this special glucose. So it is pretty much nap time in a dark cozy room, followed by a scan in a BRIGHT tube with your arms over your head for about a half hour. REMEMBER STAY CALM YOU WANT GOOD RESULTS, ANXIETY IS NOT YOUR FRIEND HERE. Needless to say I have not matured much in "the meshes well with medicine" part of my personality. So I was super proud of myself when I passed this test with only having suspicious growth in my lymph nodes. No "hotspots" detected in other parts of my body. What ever I have going on is contained to my lymph nodes, in my neck and clavical. FUCKING FABULOUS........just about sums it up.

So on Wednesday, January 18th, 2012 I had an excisional biopsy at the Spa at Thompson Peak. My surgery was scheduled for 4:00 PM. I was allowed a light breakfast before 8:00 AM followed by an entire day of drinking my own saliva for sustinence, I did this once in a yoga class but that is another story. Doesn't that sound like fun? No water or food until after the procedure. We get to the hospital at 2:00 they check me in. I get taken to the OR around 3:00. Now the fun part starts... pre-op is quiet only a couple of patients...happy hour must not be big here. I of course take this to mean either I will get great care because there is not much going on OR everyone is rushing to get out of here and this is going to really suck. Why I am unable to look at a medical event without personally dramatizing the situation is completely beyond me....I assure you the only thing that may benefit from this is my writing.........living the reality just sucks. I of course make up in my mind that they are RUSHING to get out of here. Enter John the RN with the IV... I gently ask questions like have you done this before? I tell him I hate needles. I have a really hard time with IV's. I try to channel all the calm I can muster. He tells me, "I will feel a poke, don't move, cuss if I need too." So I visualize full plump veins and breathe. Okay the poke...no problem....don't move....got that....MOTHER FUCKER........THE PAIN. Followed by John asking Heather (the other RN) for a little help....my vein collapsed...... words like get the needle a little pressure did I say pain.......I could not even look. My ears are ringing sweat is pouring down my back I could really use a glass of water and the only way to a drink is getting a damn needle in my arm....just great. In order for the show to start I HAVE to get an IV. This is the worst part. Lucky for me we are going into surgery light.....we can use the little tiny IV for the next try......Why didn't we use it in the 1st place? I will never know...it is almost like I am being sent some cosmic message from the hospital universe....this will always be crazy for you....message received it is. So Heather gives it a go and manages with the baby IV. I meet the anesthesiologist, how do you do, I will take great care of you. Dr. Bornstein arrives makes a pen mark on my neck gives me the low down. Saw my pet scan yah, dah, yah, dah, yah, dah...follow up with your oncologist yah, dah, yah, dah, yah, dah. I will call you with the PATHOLOGY Friday or Monday. I wake up an hour later with a stiffer neck and some instructions for after care about when to shower and not, how to take pain pills, ect. ect. ect.

There are no easy ways to swallow the fact that I am headed down yet another road of medical uncertainty. I am frustrated and angry. I have no answers yet.

When I do
I will share them with you

Drink Water and Breathe

Tuesday, January 3, 2012

"Love Tears"

I kind of needed to share a story about my son Mason. Tonight I was putting my sweet son to bed and we were just talking. Somehow the conversation got on to how he did not want to become a grown up. I re-assured him that he would grow into a fine man one day that was loving, strong, caring and kind. He would be surrounded by friends and family, maybe meet the girl of his dreams and get married. He said, "Mom will you be at my wedding?". I said, "Of course son I would not miss it for the world." Then my sweet son's eyes started to tear up. I asked him why he was crying and he said, " Mom they are just watering." I told Mason they were "love tears" not the kind you cry when you are horribly sad, angry or hurt but the kind of tears that flow when you think of perfect love. My sweet young son and I had an amazing moment where we just shared "love tears". I am so blessed to be a mother to my amazing boys and am grateful for each day that I spend with them.

So on a maintenance note. I had my one year check up with Dr. Vu in December. According to blood work and physical exams I am NED (no evidence of disease). This is fantastic news. It does not however negate the fact that CANCER is a GIANT MONKEY ON MY BACK. I think the worry ebbs and flows. This will be something I have to deal with forever. Before cancer the story of "love tears" would mean something different for me. I would have taken for granted my presence at my son's wedding. The thought of my own mortality now plays into my processing of future events. I realize that I need to live in the NOW. Not one of us has a guarantee for tomorrow. I try to face each day with gratitude.

Cancer is a wicked club. I don't know if I shared that my half-sister was diagnosed with ovarian cancer last year. Her journey began shortly after I finished treatment. I believe I was still having reconstruction surgery when she was having her surgery to remove her cancer in April. We went under the knife within days of each other, in separate states. After my surgery I began to heal for the 1st time since my surgery in April 2010. No more chemo, no more operations for me. While my sister Arlene began her 1st cycle of chemotherapy. She was amazing through treatment and finished in October of last year. Arlene's doctor released her from care and allowed for her to return to Japan where her husband was stationed with the Navy. Last month my sister was having stomach pain and they think that her cancer has returned. She was flown back to the states today to meet with her oncologist. My heart breaks at the thought of her going through chemo again, I pray for her children, her husband, and our family. Cancer does not have any rhyme or reason. Arlene is not BRACA positive. I don't know if I am. I was never tested. I don't know if our cancer is genetically linked. In the end it doesn't even matter (I don't know how Linkin Park got in here). Cancer just sucks. Pray for my sister.

Take some time, count your blessings, shed some love tears,

drink water and breathe