Monday, August 4, 2014

You Want Me to Put that WHERE?

My life right now centers around a blue pill box - the kind with a box for each day, split into AM, Noon, Evening, PM. Thank goodness there are some things to help with my chemo brain...(I forget at least one important thing a day...my brain is a foggy place these days - which I beg you to keep in mind as I write...my thoughts are so scattered now...it takes me far too long to write a complete thought. But we'll try anyway...)

My day starts at 6:15am when I take the chemo. There is a precise order to things because of what meds need to be taken on an empty stomach, and which ones require food and timing things which knock me out most so I can take a nap. Chemo is a "no food" set of pills, and then I can't eat anything for another hour. So I drift back to sleep if possible, or scan Instagram for lovely photos.

About 7:30am, my sweet mama makes me breakfast and I take my next two pills...the ones that require food.

If I'm feeling good (which sadly, over the past week, has not happened much), I go to work for a few hours. My incredible team is so supportive in understanding that as much as I want to be there, cancer is a unruly beast and I have yet to get the meds figured out to a functioning level yet. This week, between adjusting to my new antidepressant/mixed with my other drugs that make me drowsy as side effects, I have done little besides sleep. I haven't even had much energy for reading...today I actually landed back at the doctor because I had had a sore throat and white spots on my tongue and we (I apparently talk as "we" now, but I refer to me and mom and my nurses) were worried it might be an infection...it's only thrush. Something people on chemo often get due to the high numbers of medications they are taking. I had it earlier this month too...so we added another pill for the next 7 days to clear up my throat. I hate thrush. It makes your mouth hurt and I already can't taste food due to a few of the pills I'm on...But my mouth should hurt less after a few days of the thrush medicine and then hopefully I'll be able to eat again.  So thrush pill about noon for the next week.

When we were at the doctor today, I was asking the nurse practionier about tips for the usual dry mouth/ dry nose side effects of chemo (which are made worse by my nightly oxygen use). We were able to get a humidifier today from Norco, but the coconut oil I'd been putting in my nose wasn't helping much and my nose is now so dry from the oxygen and smokey Bend summer that it really is hurting...she said the best thing for dry nostrils? KY Jelly. (You want me to put that where?) I had to laugh...humor for the win! But seriously, KY Jelly apparently is the trick...my grocery basket when we went to the store to pick up the thrush med from the pharmacy, KY Jelly, a few things that sounded good (cantaloupe, carrot juice and sugar free throat lozenges to aid my sore throat) was a pretty funny sight.

After work (when I make it), mom and I usually have one errand to do. That's all I can handle right now. A quick trip to the bank, or to pick up something at the store. There are about 3 doctor's appointments a week to follow-up on the drugs and how I'm handling them, or when the home health nurse comes to check-in. The rest of my day involves sitting in front of the air conditioner and fans in our living room trying to combat hot flashes and the aches and pains of cancer, but really that means sleeping because the pills knock me out so much that I now sleep from about 1 to 4:30 every afternoon. We have a little dinner about 6, and by dinner I mean I nibble on whatever doesn't hurt my mouth (and no matter what lovely thing we have, it's just the motions of chewing now...they tell me taste will come back and improve even when we finish the thrush meds next week).

Bedtime is getting earlier and earlier (except tonight) and involves a routine of baking soda/salt mouthwash to combat mouth pain, two more pills, and settling into my hospital bed with a yoga nidra meditation before I dose off...although tonight, I'll be adding KY Jelly in my nose before I hook up to the oxygen tank....here's to humor, rest and hopefully some moist nostrils by morning! ;-)

Thursday, July 31, 2014

We survived July (Plus Menopause and Some Good News)!!

Girlfriends visiting Hospice House from Porland (Lacy, Caitlin, me, Bri and Allison)

My incredible family having coffee together after I got home and finally felt better...

 We made it through July! That by itself feels like a miracle.

This was a HUGE month - being in the hospital/Hospice/home on bed rest for over half the month, starting a new chemo, going back to work 3 hours a day (thank goodness for a few moments a day of not thinking about cancer), then the incredible art benefit and tons of my tribe visiting and loving me in huge ways, then our fabulous beach vacation...now I'm tired. I'm excited to slow down this month, invest in some nourishing self-care and honestly sleep a lot while my body fights "the beast." (I'm looking for a good humorous name for my cancer...suggestions welcome. ) At this point my energy is so limited, it's all I can do to have 3 things I want to accomplish during the day (i.e: work, go to a doctor's appointment, and one other thing) and then I'm lucky if I can stay awake until 9pm now...there are so many life lessons coming out of this...it's okay to rest, learning to honor what my body is telling me about slowing down, letting myself be sad/mad/pissed about the whole cancer experience, knowing I can fall apart and be brave at the same time...

I had my weekly check-up on the new chemo with my oncologist today. We do weekly general labs and everything was in the normal range today for the first time since all of this started!! Woo hoo! AND the labs we run to check tumor markers actually showed something pretty exciting...The first time we did this lab it was 523, two weeks later and just before we started the new chemo, it had gone up to 941, and after two weeks on the new chemo is is DOWN to 686!!!! This means the chemo is doing positive things!!! We are still praying for miracles because this is still not likely to be curative, but my doctor and I are hoping this is the beginning of that miracle. :)

The not good news...we ended up running more labs after the appointment today because it looks like chemo has put me into early onset menopause. Let's add one more thing, shall we? I started having severe hot flashes in the past few weeks and a few other symptoms, so we ran hormone tests today too. Early menopause in women going through chemo is pretty common, I guess. We started a new drug that is both an antidepressant and will help with the hot flashes too. We'll start looking into if we want to add hormone therapy to the mix in the next couple of weeks....

To be honest, getting the antidepressant (and some anxiety pills) is a relief after a few anxiety attacks this week. Processing the cancer journey, and how different my life and experience of being in my body are right now, compared to even a month ago, is a crazy adventure.  I'll be spending some down time this weekend thinking through what I need in this season, how to provide the most gentle nourishing care I can for myself right now...my energy levels are so different now, and coming to terms with that  need to happen. A typical day for me right now involves getting up for chemo at 6:15am, resting for an hour until I can eat breakfast, tracking my meds/temp/ blood pressure/ bowel movements, pain levels etc, going to work for 3 hours a day (this is my sanity right now), mom picks me up and we run an errand or to an appointment (right now we are still in the process of getting labs, or picking up a few items at the store), resting at home and trying to eat something that I can keep down and that actually tastes like food (my taste buds have gone away on this chemo so nothing tastes anymore) and then trying to keep my eyes awake until 7pm. face

But tonight I'm looking at the good - the awesome labs I got today! Miracles are happening and so much could continue to change!!

Thank you for being part of this...I will be really exploring what I need healing wise over the next few days...I am a firm believer that we each know what we need...and giving myself permission to really relax, sit with it, and create space for [inset new name for cancer - seriously, if you have ideas, tell me, this thing needs a funny name...].

Doodling from my healing journal the other night
Some of the best medicine in my opinion, is the self-care rituals we create space for once we admit to ourselves where we are at....I'm admitting that my energy is so limited right now (I've got about a 5 hour window per day) and then I'm struggling to keep my eyes open past 7:30pm at the very latest...


That said, I'm going to really focus nourishing myself over the next few weeks with sleep, food and savouring deep rest.

At this point, please call/ text before stopping by to visit as I'm giving myself a week of much needed rest and limited activities so I can give myself a chance to heal and recoup.


Thank you all for being my champions, rocks an supports! I couldn't do this without you!! Enjoy the weekend, and here is to surviving July with GREAT news from the labs! :)






Monday, July 28, 2014

The Best (Most Needed) Family Beach Escape Ever!

Yachats, Oregon
Practically every summer since I was born my family has spent time in the summer on the Oregon coast, usually in Yachats or Waldport and this place holds more magic for my soul than anywhere else on earth - no doubt the beauty, the family memories of spending time with my family walking the trails, seeing the view and basking in the summer sea air over 30 years, this is a soul place. I love everything about it! This past month has been a whirlwind of two weeks in the hospital, which actually scared all of us that cancer was getting the leading edge for a bit while I spent nearly two weeks in bed in the hospital and Hospice house, then home in bed due to pain. Coming out of that, I was trying to create a little normal again and was able to work a few days  for a few hours last week, and then I was flooded with love through the benefit and the kindness of friends and family, but I admit, by the end of last week, I was tired and craving introvert hideout time to process and be with my family.
Last week we did labs again, the check-in on the first two weeks of the new chemo. So far my side effects have really only been a very hoarse voice, being tired, feeling weak (but I was also in bed for almost two and a half weeks straight so it will take a bit to regain some strength) and that food never tastes the way I remember it should and I can only eat a little bit at a time. I'm tired, and slowly learning what I can handle...a few tasks a day is plenty (which feels very strange to this uber productive woman who is not used to slowing down EVER - but I'm learning).  Last week was also a tumor marker lab week...it's a way to monitor the tumor growth without constant CTs (we'll do another CT in a few months), but this week, my tumor marker is up again from 534 to 686. Seeing the number made my heart drop. It's still growing. But I have to remind myself that I have only been on the new chemo exactly two weeks today....like the Fairy Godmother said in Cinderella, "Even miracles take a little time." Needless to say, when my family gave me the opportunity to spend the weekend on the coast together, it couldn't have come at a better time.
Road trips, good food, laughter and photos usually sum up our family vacations and this one was my summer dream! I'm so thankful that it worked out for the family to escape to the beach for a few days and get some respite from the crazy cancer routine we have been on for months and just enjoy nature, each others company and so much laughter!!

My incredible champions/family on Smelt Sands, in Yachats, OR...the beginning of the 401 Trail we have walked hundreds time over the years, this time, we sat and watched the view...


My best friend Jessica, who I have known since high school, made her second trip to Bend for me this month from Boise, which selfishly gave us quality time together too, but as a nurse, she also gave my family and I peace of mind that we were able to travel with our very own private nurse and everyone was able to relax for the weekend. A much needed gift to the family! It was a real gift to have her with my family - we laughed SO much, took hundreds (literally) of photos and she captured lots of photos of my family together.

We stayed in a family friend's house in Waldport, but drove along the coast to all my favorite places from Florence to Newport, taking in the glorious sunshine, the warm weather and salty sea breeze and putzing through some of our usual favorite family haunts.


My beautiful sister/bestie (yes, she's that awesome she gets both titles...),
My sister and I share the love of the beach. We have been known to drive over for the day (6 hours each way) just to watch the sunset and sink our toes in the sand for a moment. I think after all our summers at the coast, the salt air and sand are in our blood, and we can never stay away from this magical place for too long. It was such a gift that my sister was able to sneak away from work so we could enjoy a perfect vacation together! She makes me laugh harder than anyone, and there were certainly hours of laughing until we all were crying! Laughter, the ocean and my people - quite possibly the best healing combination ever!!

My beautiful mama  
My mama has been such an incredible rock/nurse/caregiver/friend/support and joy maker in my life always, but especially in the past few months (wow, actually 6 months...I just counted, I first got sick in February...this has been going on for 6 months - that's wild!). One of my favorite things is when you can get my mom to laugh until she cries and there is actually no sound coming out of her because she is laughing so hard. We joke and say "now you've REALLY done it." That happened quite a few times on this trip! Pure bliss!! She is always someone to inspire me by finding beauty, creativity and joy around us.

Beth took this photo on her early morning walk when she actually went to find me a seashell since I couldn't go far enough yet (I'm gaining strength back slowly) but I LOVE the texture in this shot!!
Laughing with my dad
 My dad and I laughing as we're trying to take a selfie...both of us are photographers, but trying to take a good cell phone selfie on this evening was not working out, but I love both of our smiles in this one. Road trips and photos are always something I associate with my dad the photographer. I can't even count how many road trips we have taken across the country, doing our "drive by shooting" (I take photos out the car window while he drives sometimes) and enjoying nature. We had such a good weekend seeing beautiful sights, basking in sunshine and capturing LOTS of photos!

McMurray Family at our favorite whale watching place in Yachats...

At Heceta Head - a glorious little bit of beach and we actually got a good walk in...it was perfect!

My besties...We actually look like we could all be sisters here...love that!

Sunset in Waldport OR - Magical light and energy!


This weekend was my dream summer vacation and came at just the right time! I needed the break from the usual schedule, to be outside, my toes in the sand, sea air on my skin and quality time with these amazing people who make my life so incredible every day!  I came home tired, and with a sore throat, but absolutely filled with hope, energy and permission that I can rest and slow down and give myself what I need. I found a bit of my twinkle again. :)

Thank you all for sharing this journey with me. Sometimes the simple act of writing and knowing people are following the journey, sending good vibes and healing energy to my family makes for such incredible healing energy!

Here's to dreaming up NEXT summer's family beach vacation! ;-) I'm planning ahead.






Thursday, July 24, 2014

Overwhelmed by Gratitude...An Art Benefit

High School Alumni friends who turned up for the event....
 For a writer, I am at a loss for words about Monday night's the Eff Cancer Art Benefit some friends (Julia, Shannon, Liz, Andrea, Kevin, Isles, Derek etc.) held to raise funds for my medical expenses at Volcanic Theatre Pub. I haven't been able to put into words what the night meant to me...I am completely tongue-tied.  I cannot wrap my head around the magic that happened that evening...instead I'll use pictures (because thankfully, my friend Christina grabbed my phone and took pictures throughout the evening so I would have them...).

The event was bigger than I could have imagined! About 450 people came through to enjoy food carts, music from my friend's band Isles, drinks and good company and browse lots of art, products and treasures from local businesses and creatives! The goodies available were incredible and so much was donated that they weren't able to put everything out!! I was blown away by the things people had so generously donated to the event - art, nights at local retreat centers, restaurant gift certificates, a cruiser bike, massages, etc...incredible generosity!!

I am overwhelmed by the fact that I am so blessed with incredible support and love and so many people walk through cancer alone. That gift by itself is incredible. I cannot imagine going through this journey alone...but I know my reality of support and love is a precious honor and I do not take it lightly.

Over the course of the evening, many high school alumni gathered, old friends, new friends who shared how they saw the even in the paper and wanted to come...my heart is OVERFLOWING with gratitude and hope from this incredible tribe!!

Crowds of friends, family and new friends who showed up to support me...
Some of the ladies who made this possible...Liz, Shannon, Andrea and Julia were the masterminds behind this event, followed by an incredible team of volunteers who helped set-up/clean-up/pick-up etc...the tribe astounds me!!

Photo by Pixie Campbell, my sweet art inspiration, Pixie, not only donated a piece, but attended the event which inspired me in a HUGE way!

Some of the art on the wall up for bids...
Products and art available during the silent auction...
Lovely friends handing out in the patio enjoying some drinks and a good time...
Family friends finding a good piece of art to take home...
My adorable parents enjoying the event...
Me and my friend, Jacob
I cannot thank you enough for your support - planning, attending, donating items/ purchasing items... and simply BEING THERE. It was the most fun I have had in months to be surrounded by such love!! My family and I are so completely amazed and blown away by your love and I still don't know how to find the words to say thank you enough. So thank you from the bottom of my heart!!! The event was a great success and I am over the moon and still floating on the joy that night gave me!! THANK YOU!!

Sunday, July 20, 2014

48 Hour Miracles...

It is hard to believe it has been 48 hours since I could barely move....the horrific pain of last week was so bad that on Thursday when we went to the oncologist I had to use a wheelchair for the first time because I could not walk from the car to the doctor's appointment. After the appointment, mom and I actually had a moment where I was not sure I could get back into the car due to the extreme pain and it took a good 15 minutes for me to muster enough strength to pull myself into the car. It's a strange experience to have your body give out on you in pain, to know what you were once capable of and due to pain and lack of strength to not be able to move.

Getting the pain pills under control and getting sleep finally, thanks to the fancy mattress cover, I began feeling like a whole new woman on Friday afternoon...I actually could get myself out of bed without needing people to literally pull me up. I could sit up in the recliner again! Although I began having side effect symptoms from the chemo on Friday (dizziness, nausea and a headache), it is still a night and day difference from what I had been feeling! Saturday I actually felt like myself and took advantage of it!!

My uncle came to town and my family was able to gather for coffee at Barnes & Noble like we used to on Saturday mornings, all in smiles and be together. My sister and I were then spoiled with a girl's shopping day at Ross - retail therapy: new dresses do wonders for a woman's soul! As my body has changed a great deal from being in bed lately, it was nice to find some things to feel pretty in and to actually feel like I have the energy to dress up again a bit is refreshing!!

Then Monday night's art benefit means old friends are coming to town!! I can't believe the incredible number of friends showing up for this! It's humbling, inspiring and I feel SO FREAKING LOVED!!! One of my oldest childhood friends and her mama came by on Saturday afternoon and it was so good to squeeze her! I feel energized just knowing how many wonderful hugs I will get over the next few days!! AND I finally am feeling good enough to go back to work Monday - I've been cleared to work 3 hour shifts and the benefit of feeling like I am contributing to the world again, to the company that is blessing me beyond believe with insurance and support means so very much to me and I am eager to see my friends at PacificSource! It will do wonders for my soul!

I truly am the luckiest girl in the world, in spite of everything, these are magical days!

Friday, July 18, 2014

Things Are Looking Up...

My new chemo is a 5 pill regime I take every morning at 6:15am indefinitely. At this point, our plan is to take it either until we get our miracle, or until I can no longer handle the side effects, or my body just gives out. Obviously, hoping for the miracle. Each time I have taken it so far this week, I pray over the handful of pills before washing them down with water. Our usual family prayer lately says"shrinky dinky do" and I'm sure God laughs. Thank goodness Spirit has a sense of humor.

I've been on bed rest almost a full week now between my groin situation and while adjusting to this new chemo. I'm getting cabin fever something fierce, but still have hardly enough energy to do more than read (current reads: Sera Beak's Red Hot & Holy, Mandy Steward's Thrashing About with God, and a childhood favorite: Island of the Blue Dolphins), journal and outline the book I've decided to write. Cancer makes you go after dreams hard (life should make us all do this), but writing continues to be something I can do regardless of my energy level and makes me feel connected to the outside world. I'm slowly getting used to the drugs, and we upped my pain medication yesterday at the doctor so I should start perking up too.

Yesterday my incredible home health nurse came by with a new fancy foam mattress for my bed...it feels magical! It actually is comfortable enough that I slept last night. After our usual run-through of all the meds I'm on, she decided I needed to up the pain pills and sent me off to the doctor to do so...as the tumors grow,  I feel more pressure in my abdomen, but the remaining pain from my surgery in March that split my belly open down the middle completely ruined my abs (chemo also weakens the ligaments and many people I know who have been on chemo say their ab muscles were never the same after chemo), needless to say my sweet nurse found me a belly binder often used for after c-sections to hold the muscles together properly...already I'm getting relief and can move on my own again for the first time in weeks! Not having core muscles anymore made my back and abdominals so tired, but I'm not cleared to really work on those muscles because of the abdominal tumors and risk of tearing the tumors and bleeding at this point. Additional surgery is not an option due to how fast the tumors are growing, they fear that if they were in there cutting things up they might rupture again, spread and we'd have more of a mess with more tumors growing quickly. Our goal is to keep the tumors I have at the size they are as long as possible, and hope that this new chemo will give us a miracle and shrink them all together. The groin, they tell me will take months to heal, and all I can really do is go slow, rotate ice and heat and stay on top of my pain medications. I was feeling like an old woman, all things considered, who was confined to my bed, but these changes should really help!

Monday night is an art benefit my friends are putting on in my honor from 5-9pm, which is a lesson in letting people truly help. The perfectionist side of me struggles not to try and help, or organize, or do anything. All I have to do is show up. Cancer is teaching me to rely on others for strength and daily living in a way that is so unfamiliar and so strange. I'm really excited for this event! It will include music, art and community and from the sound of things the community has really rallied around it! I feel so incredibly blessed, supported and encouraged by the whole thing. Despite my moments of feeling totally alone in this, I truly have the best community supporting me and my family and I still don't know how to express my gratitude for the kindness and love we have been given. I would love to see you at the event (details are linked in this paragraph).

Design by Megan Izett Design

Monday, July 14, 2014

Let's Try New Drugs (or chemo arrived in the mail today, woo hoo)!

Today my much awaited new chemo arrived via UPS. We're trying our own trial of sorts with a drug called Cometriq....I canceled the trial I was going to do in Portland, feeling that it was going to drain me with lots of travel and unknowns. After doing a genetic test on my tumors, we learned that my cancer has traits similar to thyroid cancer, so this specific drug is very targeted. We know what I'm getting. The Portland trial wouldn't guarantee what drug I was getting as I would be either in a control group or not. My oncologist and I are hopeful this drug, although never tried with Sarcoma, has potential for good. Wouldn't it be a wonder if it works as we could make history and help someone else? ;-)

The white cooler of pills arrived this afternoon and I read through the usual side effects, nothing too different than the doxo. I was on. It came from an East Coast pharmacy with a packet of sunscreen, lotions, lip balm and a note: call us anytime. We hope this works too! They'll ship it every month, no cost to me what so ever. Miracle courtesy of my insurance company bending over backwards to help get this drug!

I hit a dark place last weekend but I think I'm coming through it. After getting home from Hospice House, I had managed to pull my groin and was in some of the most excruciating pain I have ever experienced...let's add insult to injury. I could barely move all weekend, but pushed through trying to get some grounding beneath me again. To feel, slightly, even if temporarily, normal. I realized there are about two days while at Hospice House that I do not remember in any way shape or form...my family came from Portland and I have no recollection of the entire experience...I remember other guests, but those days that I was really flying high on morphine are completely gone (no offense, family). It is a strange thing to  be made aware of a gap in one's memory...

The home health nurse came on Friday to officially sign me up. That's when it hit me. This is real. Before, I could go to doctor's appointments, watch them pump red chemo into my port and say the words "I have cancer," but it still felt surreal, like any minute the nightmare would be over and I would wake up to my old life. I had been working and trying to carry on as if all I had to do was take some drugs and it would be ok. The nurse (whom I like a great deal) made it real though...she asked questions about how home bound I am, what I'm able to do for myself vs. what my family has to do, and it hit like a ton of bricks. This is my real right now. Cancer is part of it. I got scared. The weekend turned into a dark place and I fell into a funk of wondering how soon I should be responsible for getting my affairs in order and still maintain a sense of hope and expecting miracles. It's a delicate balance. Everyone should have their affairs on track in the 30s, but who really does that?

Sunday my sis took me to the mountains for a little drive, loaded me up on morphine and we at least let the sunshine kiss our heads as we talked and cried. She made me aware of the darkness I had let sink it...I'm shaking it off and I know it will come and go, and I can be both responsible for me and expectant of miracles at the same time. All these things collide in this odd and beautiful dance unlike anything you can imagine if you have never walked it. It is a lonely place, and yet, the support I have is incredible...I'm in a strange paradigm.



My friend Nancy shared her survivor story with me again last night, and the switch went off: I still have time. I am not in my grave yet. The voice in my heart told me to fight, to make goals, to nurture myself and to put on my bad ass armour and fucking fight like hell (excuse my language). Today all I could do, thanks to being doped up on morphine for the groin pain, was lay in bed, ogle Pinterest and watch Facebook; there were no doctor's appointments, nothing that had to be done. Family friends graced my bedside chair all day encouraging me with hugs, love and laughter. I am not alone and I feel alone at the same time. BUT I feel stronger, more hopeful and more authentic knowing this is my story, crappy as it is, it is not finished! Both the struggle and the calm are beautiful and now being able to recognize that this is truly real, freely empowers me to process it, to feel the rawness of it and to move forward into both good days and challenge. I will have equal numbers of both and I am so very deeply thankful that I am never truly alone! The tribe that I have is bigger, more enormous in loving me than I will ever understand, and Spirit, is still here. As always. Bring on the new drug, the adventure, the eff off cancer attitude and a willingness to rest, fight and be in the battle. Here we go!

Thursday, July 10, 2014

Heroes

Tonight I'm laying in my hospital bed that has been set up in my bedroom at home, the moonlight pouring through the window under the breeze of the fan. I'm roasting. It has been a wild day. The home health nurse came for an intake this morning to ensure I'm set up well after arriving home last night. There were doctors appointments and we finally had my tumor markers checked so we can avoid as many CT scans in the future...average is about 220...mine is 534. We new the tumors were growing like wildfire, and at least we can measure it with few CTs now.

My oncologist has become one of my heroes. Today as we talked again about the significance of quality of life, of knowing what I want and making shit happen - he is part of my army working with my insurance and palliative doctors to make sure I get the quality of life I want. I am not a woman who will idly sit on my couch waiting to die, he gets this and I feel so heard and fought for by him right now. We are talking about how I can keep working a little bit to feel like I am contributing to society and how to make my dream of a summer beach trip a reality. I have so many heroes in my life - so many incredible supporters, champions and dream-givers.

I transitioned home last night on pain patches, but still ended up needing pills this evening...the pain is getting worse.  We are gearing up to start the new treatment plan tomorrow...The drugs are ordered; we know it's a wild unknown...my doc has never used these drugs, and we have no idea what to expect. And yet I am more at peace about this treatment plan than any we have thus considered. It doesn't mean it's easy. There has been much grieving in the last few days...things I'm sad I might miss.

Grieving doesn't mean I'm giving up. I still have a big fight in me, and many wild miracles, but I cannot ignore the pain, the what-ifs and whens of a wildfire cancer that forces me to look within and be blessed by the beauty and the pain that simultaneously walk side-by-side in my life presently.

Tonight my family and I went on a picnic at Green Lakes trail head up the Cascade Lakes Highway...a little table by the streams and cooled off in the mountains. They are my heroes. I wrestle with how things could have gone differently had I died on the the surgery table back in March, and although that would have hurt, it would be a different pain. Instead, we are blessed with living daily with the pain, my lack of energy and our very different pain. Each day the blessing, beauty and heartache are with us.  That's okay. I am so thankful for my co-survivors, my family who has the daily routine of experiencing every part of this with me and I am more in love with them than ever.

Have you hugged your family today?


Wednesday, July 9, 2014

Home!

I'm home!!

I was transported to Hospice House last Wednesdy I believe. Hospice does not have the same associations as years past...it's a six unit home with comfortable rooms and doesn't mean I am dying today - just getting pain handled. My room was a flower shop overflowing at the seems with wild flowers, a painting from my friend Mishell who stopped by with her sweet man and son from Boise to visit. I have been blessed by sweet nurses, friends, care and love and the beauty of the moment.


The beautiful thing about facing one's mortality daily is the ah-ha moments:
 I am so loved - I have been showered with friends love, laughter and kisses and good company from people traveling from Seattle (Leigh and Bethany and sweet Luna), Boise (Mishell, Art and little David) and Jessica, Portland (Bri, Ali L. Caitlin) and locally (Ali L., Chandy and Andy, Katie and Eli and sweet 9 day old Finn Orion who nestled into my chest, Jacob, sweet co-workers, and old Res. Life friends Emily and Trae from my SPU days and family). I was in and out of drug induced clarity, and I know many sweet people called, texted, showed up and I remember most of it...but it is certainly nothing personal if I have have forgotten. I was on morphine and did have a few hallucinations (involving Mary - Crazy Eyes - who was my clown nurse...now there is a drug induced horror I never need again)! 

The sweet gifts I receive of time, gentleness and friends who climb into my hospital bed to cry with me mean so so much. You don't know have to know what to say but be here. I don't know know what to say - I only know that despite the number of my days I plan to make the most of each one, and to focus on what is truly important - my peeps. They remind me that there is always hope, even when we are considering things no 31 year olds should ever be considering....the dreamer in me is filled with hope and miracles, but the practical side is also streamlining bills, organizing paperwork so when I do die no one is left with questions about my accounts. It's a strange thing to be thinking in terms of one's mortality when one would rather be planning a wedding or a honeymoon or some more FUN life-stage appropriate event.

My doctors are doing a lot of out of the box thinking especially when it comes to drugs and due to the Heme One Foundation genetic test I had done, they believe a drug used for thyroid cancer might actually give me more quality of life. I have decided to continue exploring natural treatment options for quality of life purposes, but also to do the following plan:


The Plan:
Last week I had settled on doing a clinical trial at OHSU, we would have started tomorrow. It would have involved long drives to OHSU the first day, the 8th day, then a week off before staring again. I'm tired just thinking about it, the nausea, the fact that only 11-12 people have done this study and one died the first week due to a fluke thing...I wasn't highly optimistic about that option.

My oncologist here had looked into a drug, more commonly used for thyroid cancers but that would work with my met-blocker based on the genetic test we did. This drug, although it comes with it's own unknowns, also gives me more of a quality of life by allowing me to stay at home, near my peeps and enjoying life as much as possible. We were able to work with my insurance to get the ball moving (and I am so thankful)! We'll start the new drug Friday. There are unknowns, and truly, it is no different than any other clinical trial...at this point, anything is a trial. We don't know what will happen but I do know what is most important is feeling well enough to enjoy time with loved ones, work and contribute some to the world and to savor the moments.

I'm settling back into being home, finally cutting my work schedule down - I'd still been pushing close to to full time weeks in recent weeks and working on simply enjoying life. More details coming as we unfold the plan with my oncologist here tomorrow, but for now, that is the plan...

Love life, rest, be cared for at home in Bend by my doctors and loved ones. Sounds perfect!

Thank you for checking up, connecting, loving! I'm hoping for a get together soon! I'll keep you posted. xoxox Love you all.

Tuesday, July 1, 2014

ER & The Hospital

Yesterday I had sharp lower back and stomach pains that kept me up until 2am when I couldn't stand it any more and my mom took me to the ER. A Ct scan and labs later, we found out the worst: the cancer has grown  substantially in the last two weeks. They are worried about internal bleeding. We have reached the point of few options in a short matter of months.

My doctors all filtered into the room for the conversation no wants to have....it's time for hospice and pain management.

I'm in a lot of pain - both physically and emotionally. I was still hoping for a miracle. I'm scared, overwhelmed, mad and sad. No 30-something should have to face end of life decisions. It's shocking. I don't have words. This feels so completely surreal.

Right now, we are waiting to hear back from my specialist at OHSU to see if we can still consider the trial. I'm numb. 

Please keep praying for me, for my family. We are very hurt and sad. We need the love of the tribe more than ever.

Thank you for walking this crazy journey with us. We love you all. I'll keep posting here as much as I can.

Friday, June 27, 2014

Plan B

The past week has been a whirlwind of emotions. It started last Thursday with my first CT scan since starting doxorubicin (chemo). It wasn't good. The tumors have grown substantially. My oncologist here had called my specialist at OHSU to discuss options before coming in to tell me and my mom the news. They had decided not to put me through the third dose of chemo, saying it wasn't fair to put me through that when it did nothing. I lost it. Mom and I had a good cry, then had a little picnic in the woods. The woods have always comforted me.

The next day one of my best friends and my sister took me out. We needed time to cry, to process, to sit with it.

I am so thankful for my people.

Being at work helps - my job, my co-workers, helping other people helped me remember there are still many good things.

Friends and loved ones have made the week okay - there has been laughter and love and I know that no matter what happens, I am loved beyond belief.  I am always amazed there are more tears in my body after how much I have cried in the last three months and I am equally amazed by how much I have smiled, laughed and enjoyed life.

My parents and I went to Portland, stayed with my aunt and uncle, and headed to OHSU. At this point I'm weighing out the options...There is a clinical trial at OHSU trying a drug cocktail that sounds promising...But I still keep coming back to natural options - juicing, green smoothies, a radical lifestyle overhaul. I'm scared. I'm mad. I wish for wild health.

At this point I'm reading a lot about the options, talking with those closest to me, and meditating on what's next for plan b. I'm sitting in the midst of the unknown, thinking about things 30-somethings shouldn't have to think about, and life continues on - tears and all.   Tomorrow my dear friends and co-workers are hosting a garage sale to help off-set medical costs. I am surrounded by love. I am still one of the luckiest women in the world.

Sunday, June 22, 2014

Things No One Expects during Cancer

Photo by Alisa Hayes Photography


Things No One Expects During Cancer:

1. Due to chemo, once you are through the nauseaous days, I'm RAVENOUS for carbs and protein! Things I crave lately include bagels and cream cheese, turkey sandwiches and meatloaf...weirdest cravings ever! I can't keep veggies down right now...I hate it!

2. Chemo makes you feel like you are PMSing constantly...one minute I'm weeping over a commercial, my hair, or laughing with a friend and then the green monster hits and I'm annoyed with the 5th sweet person (who genuinely cares) but asked me at the wrong moment, "how are you?" Chemo also makes your eyes water all the time, so the line between crying and watering eyes is hard to differentiate, but usually my eyes are just watering.

3. The list of things I wanted to accomplish in my life has become greatly targeted...it used to include things like Peace Corps, spend a month on a tropical island, write a book, do something great...now, those things would still be lovely, but what I really want more than anything is quality time with friends and family, to be true to myself through cancer and to love deeply.

4. Feelings of back the f-off when people do a double take at my scarfed head in public has become common....I've noticed people looking trying to figure out if there is hair under my hat/scarf or if I'm a bald woman...it's just cancer, people, sheesh!

5. I'm overtly aware of cancer...The Fault in Our Stars Comes and Chasing Life came out about life with cancer...I highly recommend Stars....beautiful, raw, real!!

6. The amount of stupid things people say/do has increased - strangers who touch my head, or the person who asked "how does dying feel?" to which I should have replied, "how does rude feel?" I am completely blown away by the number of rude/stupid things people feel are somehow okay to say/ask/or do.

7. The people who show up best are not who you expect. My great support has come from very unexpected people. They are my rocks.

8. I am in awe of how connected to my body I feel - if you know me well, I have long been an advocate of body image and self-love. Cancer has only magnified that. I am proud to wear my shaved head (because yes, I still have stubble on my head) and my 10 inch scar down my belly from surgery. I could have died on that table. I didn't. I'm totally in awe of the power of my body!

9. Chemo doesn't kill all your hair...I still have hair. Surprise!

10.  People feel compelled to tell you stories about their great aunt, or their grandmother who died from cancer, or their friend's dog had sarcoma and died. Thanks for the info. Those stories do not relate to me. Young adult cancer is completely different than your grandmother's cancer or a dog's cancer, but thanks for the info.

11.  Suddenly everyone has medical advice for me...thank you, if you are not MY doctor, you are not at liberty to tell me what I HAVE to do; you are welcome to give your opinion, but that doesn't mean I have to take it.

12. Just because I was diagnosed with cancer does not mean that my life is boring, uneventful, or tragic...it is just as magical (if not more so) than ever! Stop looking at me with you sad eyes and telling me "when you beat cancer everything will be fine," or "you just have to focus on getting well, you can have fun later." Cancer does not mean a person's life should be put on hold. These comments are not helpful - no one knows if I will beat cancer, or if I will die earlier than I would have liked. What IS helpful is to genuinely ask "how is your day?" or "what is the best part of today" because all of us need a lesson in being truly present to the moment and enjoying the here and now.

13. The generosity of others astounds me! I continue to be blown away by the number of people who donate time, money, gifts and love to my family. We are so blessed!

Monday, June 2, 2014

Chemo #2

Some of the lovely gifts from the Wiggin' Out Party - THANK YOU!!

Last week was my second chemo and although it went better than the first one, I still got sick, but I'm learning tricks of the trade...for example, the white blood cell shot I get the day after chemo gives you massive amounts of bone pain, but taking Claratin for three days around that helps! Who knew! The day before chemo my co-workers hosted a wiggin' out part for me and decorated my head with scarves, hats and wigs...here are a few of them. I'm still learning how to tie scarves, how to rock the chic cancer bad-ass look, but so far...I'm loving he options! It was a great supportive way to go into the second dose of chemo.

Chemo this time around involved more trips to urgent care for fluids and meds; I'm more tired than anything this go around, but they tell me that is the dead cells getting flushed out of my body. My friend Christina came with me to chemo this time. I was nice to have a positive face to sit with me post conversation with my oncologist. He's serious, and hope doesn't seem to be a part of his vocabulary.  Is it too much to ask for a doctor to at least offer hope? I'm not expecting you to make everything perfect, but I simply want someone to say we're hoping for the best and we will fight together. I continue to be thankful for my tribe - family, friends, nurses - who fight along side me when doctors don't see to have that attitude. He's not a bad man; he's young with little bedside manner and less time to have experienced miracles. I'm bent on being a miracle case just to prove him wrong - that science and medicine do have limits, and meditation and faith know no bounds! Pretty sure we'll be having a conversation about hope in my next appointment...bring it on serious, oncologist man! :)

The weekend and today were rough. I started out feeling better, but then slowly progressed into nausea and dry heaves, and pain all over. The worst...I thought it would be a good idea to lay on the floor in some very basic restorative yoga poses....I guess when your body has been fighting you for about 3 months, laying on the floor hurts your bones! But at least I could laugh....yoga will solely happen on the comfort of my soft bed until further notice. :)

And the good news, my specialist and oncologist here have decided that we'll do 6 doses of doxorubicin (the lifetime max.), then I'll get a break from chemo...it could be anywhere from three months to a year depending on how it goes. They say we keep monitoring it of course then, but I'm thinking I'll keep fighting then with more natural methods. I'm still researching, but there are options. So watch out world, come October this girl is getting a chemo break!!

But magical moments continue to happen. Somehow in spite of cancer, I feel bolder, more confident, more optimistic than ever and I'm pretty sure things are going to work out beautifully!

Thank you for all the positive thoughts and well wishes through the second dose of chemo. Now for a little down time until the end of the month when I'll have a CT scan and head back to OHSU for a follow-up. We're praying the tumors will have shrunk, or at the very least not grown. I'm not so secretly praying for clear scans...#eff you cancer!

Wednesday, May 28, 2014

Hair.


Friday my hair REALLY started falling out...I brushed it one more time and much of what was left fell into a pile on the bathroom floor which my cat immediately wanted to play in. Weirdo.

My mom, sis and friends gathered at a friend's salon and all pitched in for the shave. It was highly liberating! I would never have considered cutting my hair short - but I was surprised that I freakin' love it! I can't wait to rock headscarves like my African friends!!

Last weekend was a whirlwind of friends and family getting me moved from my apartment back in with my parents, some good laughs, lots of naps, and finally having a bit more energy after being sick for a few days last week.

Yesterday was my first "bald" day at work - I work a scarf and my sweet co-workers shared the adventure and wore wigs, scarves and hats with me. I am so lucky to have such a great, supportive team walking through this with me.

Here they are in their wigs and hats! Amazing!

Some of my sweet supporters at Pacific Source. Love them!!
Tonight, my amazing friends hosted a "wiggin' out party" and showered me with scarfs, hats and wigs. It is a beautiful thing. In honor of Maya Angelou's death this week, I share her poem "Still I Rise..."


You may write me down in history
With your bitter, twisted lies,
You may tread me in the very dirt
But still, like dust, I'll rise.

Does my sassiness upset you?
Why are you beset with gloom?
'Cause I walk like I've got oil wells
Pumping in my living room.

Just like moons and like suns,
With the certainty of tides,
Just like hopes springing high,
Still I'll rise.

Did you want to see me broken?
Bowed head and lowered eyes?
Shoulders falling down like teardrops.
Weakened by my soulful cries.

Does my haughtiness offend you?
Don't you take it awful hard
'Cause I laugh like I've got gold mines
Diggin' in my own back yard.

You may shoot me with your words,
You may cut me with your eyes,
You may kill me with your hatefulness,
But still, like air, I'll rise.

Does my sexiness upset you?
Does it come as a surprise
That I dance like I've got diamonds
At the meeting of my thighs?

Out of the huts of history's shame
I rise
Up from a past that's rooted in pain
I rise
I'm a black ocean, leaping and wide,
Welling and swelling I bear in the tide.
Leaving behind nights of terror and fear
I rise
Into a daybreak that's wondrously clear
I rise
Bringing the gifts that my ancestors gave,
I am the dream and the hope of the slave.
I rise
I rise
I rise.

Thursday, May 22, 2014

Real.

Cancer just got real over the past few days. My hair starting falling in the shower....cancer finally feels real. Explain that to me? Its been two months since my emergency surgery, I've been to many doctor's appointments and had my first chemo and still as encouraging notes and hugs poured in I've been feeling like this is a mistake. I still thought somehow this was wrong, this wasn't my life/my body/my reality.

I stood in the shower for a long time looking at the clumps of hair in my hands. I'm not scared of being bald, some of the most beautiful women I have seen were bald, but something about your hair coming out of your head effortlessly is so unnatural and wrong. The sarcoma group I joined online told me people usually lost their hair around the two week point after their first dose of doxorubicin. Red devil indeed (the drug's nickname for the horrible effects it has on your body). It sounds like people loose ALL their hair - including nose hairs! Who would have thought...

I vacillate between feelings of how lucky I am to be alive/ supported by an incredible community/ able to work/ able to share the journey and feeling pissed that I got dealt this hand. In more lucid moments I'm grateful for all the incredible things life has given me so far - family and friends/ travel/ work experiences that I have loved/ education/ creativity and then there are the moments of fear and sadness about what I am missing out on simply being a young adult cancer survivor.

The hardest part I think is just recognizing you can't do everything like you did before...it's a sobering reality.  This morning I woke up to more weird side effects - bleeding gums again, pain everywhere and hair coming out every time I touch my head and what looked like a blood blister under the new scar down my abdomen from the surgery (they think it's just part of the healing process). The doctor said bleeding gums could just be from flossing and taking meds in the same day, the pain is just part of the chemo attacking my cells and probably just the stress/emotions of it all...or a little bug.

Today I stayed in my recliner all day. Everything hurt. I keep reminding myself that everyday won't be like this, and hasn't been like this. Today is just a rough one. I watched a trailer for a new tv show called Chasing Life coming out in June about a woman who gets diagnosed with cancer.  I hope they make it real - the aches and pain, fatigue, chemo and hair loss. The trailer just looked pretty. We'll see.

Hopefully tomorrow will be a better day.

Wednesday, May 14, 2014

Port of My Heart

The final paper stiches fell off tonight...the port to my heart is visible (well the incision and the little bruising).

A " port is a location on a coast or shore containing one or more harbors where ships can dock and transfer people or cargo to or from land. Port locations are selected to optimize access to land and navigable water, for commercial demand, and for shelter from wind and waves. Ports with deeper water are rarer, but can handle larger, more economical ships. Since ports throughout history handled every kind of traffic, support and storage facilities vary widely, may extend for miles, and dominate the local economy. Some ports have an important military role." (thank you Wikipedia.)

I like the imagery of that little device being a place of safety for ships, and having a military role...that means it can beat the crap out of cancer!!

I've been such an emotional roller coaster lately; still totally in shock and denial about this whole thing. Tonight mom and I went on a picnic and she shared with me that last weekend after chemo, she actually worried at one point that I was giving up ( I felt HORRIBLE - picture the worst flu of your life). Hearing her say that triggered a lot. I don't want to give up...I admit I'm terrified, sad and probably depressed. I haven't fully become angry yet and I know I will get there and it will move me into wild action. I'm not giving in; I'm going to fight. It doesn't mean it isn't scary or depressing, and I know not every day will feel this way. There will be good days. I'm still just lost at sea, slowly finding my way to the port of my heart - the place that will remind me that I still have lots of things to be grateful for...

I could have died in that first surgery. I didn't. I'm living my second chance. Life is already a miracle. I'm thankful. Beauty abounds.

I read the tribe's comments and I know blogging about this journey was the right choice. It's healing to me and I am amazed by your stories, comments and ways of loving me and my family. I am eternally gratefully. You inspire me everyday not to give up, to fight and to love deeply. You help me move on every moment, to see beauty even when it's hard. Thank you for being my port in the stormy seas.

It also made me think today about the power of legacy. Not one of us knows how much time we will have. Every day brings the risk of potential danger...I could have been killed in a car accident, choked on my gum, or fallen on a hike somewhere. None of us are guaranteed anything in this life.

So what is your legacy? If this were your last 24 hours? Your last year? Your last 5 years? Of even you last 50 years? What would you make your legacy??

I'm done with status quo. I don't know the number of my days, and although I want MANY MANY more; legacy happens everyday!

What will you do with your wild and precious life?

How will you thrive, not just survive?

How deeply will you love?

I hope you'll join me in this wild quest to live, love and laugh well. Life is so beautiful!

Tuesday, May 13, 2014

Thank You Tribe...

Last weekend was rough. Chemo wore me out and I spent most of the weekend in bed, nauseous and crying. They told me it could be worse 3-4 days post chemo, but that everyone is different so we just needed to get through the first round and then the next one should be easier.  I hope so. My port site hurt when I move it, I couldn't keep much of anything in my body, my bones hurt and I woke up one night to bleeding gums. Gross! But like my sweet mama said, they won't all be bad days. I'm trusting that. She's a very wise woman.

Today I'm home in bed again, so very thankful for my tribe. This is difficult for all of us. No one knows what to say and I'm a blubbering mess. I've decided blubbering messes are beautiful because it means we still feel something. I'm so thankful for the text messages, emails, Facebook support and just knowing that I'm not alone in this. It means the world to me.

By 1pm I went back to BMC (my new home away from home). After chemo there Friday, I went back to urgent care on Sunday morning for a shot that boosts my white blood cell count to keep me healthy, then Monday afternoon after feeling horrible and having the bleeding gums, I was sent to the lab for blood work to see if my platelets were low. They were fine. I was given more anti-nausea meds and told if I wasn't feeling much better by morning to return to the infusion lab for fluids and meds. I spent the afternoon there hydrating and taking more meds and surveying the room. Today was the first day I saw a woman close to my age there. I found comfort in this. It's a strange thing to think when my friends are contemplating houses, babies and marriages, I'm contemplating how to get through incurable cancer. I am so thankful for friends who don't let me dwelt on it, and who help me stay present to what is most important in life: the tribe.

My family are my rocks. They cry with me, hold me when I totally fall apart, get up in the middle of the night to make sure I get all of my meds, drive me to appointments, and read me Hafiz. McMurray clan, you are the best family a girl could ever ask or hope for!!

Tribe - I continue to be so thankful for your messages, cards, gifts and generosity! Everyday my family is reminded that we are not alone in this, and that means the world to me! You are such an incredible part of this for me and I so appreciate all your encouragement, generosity and love.

Thank you all so much for going through this with me, loving me and being in this space with me. You are AMAZING!!!

xoxo,
Sarah

Saturday, May 10, 2014

Chemo Day 1...

My incredible support team at work....Pacific Source is amazing!
Wednesday after getting the port put in I felt like I had been hit by a mac truck. My entire shoulder area was sore, so I camped out on the couch taking pain pills and sleeping. Yesterday when I got back to work I arrived to this beautiful group of people wearing navy blue and their follow your bliss shirts in support of my first day of chemo. I am so completely amazed by the tribe!

I'm doing my chemo (doxorubicin) at BMC. Mom and dad went with me to the first round to hear the consult with the chemo nurse educator prior to starting. It still feels completely surreal. We packed the gift bag from BMC with information papers on what to eat, how to combat fatigue, nausea, pain etc. and loaded my bags with water bottles, and pill boxes it started feeling a little more real. We talked through the usual side effects and the last chance call on fertility. I've decided not to freeze my eggs - it's too expensive and with my polycycstic ovarian syndrome I never was sure I would have my own kids anyway, so it seems like an expensive risk at this point. Besides, kids can come into your life in a variety of ways and there are many kiddos out there who need a magnificent auntie or god-mother! But I'll still admit it made me tear up to think of the reality that my fertility is really drying up now...I can always find sweet babies to snuggle for my baby fix! :)

The best news of the consult...I CAN kayak this summer after all! I just can't lift the kayak or do any speed racing. I'm okay with that. ;-)

The chemo session itself wasn't too bad. I'm still sore from getting the port put in last Wednesday, so my chest was swollen and required a longer needle, but I actually didn't feel it going in. We sat in recliners smiling awkwardly at the few other people in the infusion lab. My sweet nurse Janelle actually lives down the street - small world. The infusion itself was a combination of taking some blood, getting pumped full of liquid, saline flushes, anti-nausea meds, then the pump of red looking jello shots of doxorubicin, followed by more anti-nausea meds and fluids. Sunday morning I go into urgent care for the follow-up shot to keep my white blood cells up. The whole thing took about 4 hours because of the education consultation, the next session should be faster.

My parents and I had a nice dinner while I was still feeling okay, but a few hours after getting home, I began feeling sick. I took more anti-nausea meds and pain pills and inspired my mood while reading the tribe's Facebook comments, emails, texts and looking through cards.

Then the miraculous happened: UPS delievered a Vitamix! I have dreamed of perfect green smoothies done on a Vitamix for years! My cheap blender has never done the job well and I'm sure this will help in so many ways!! I look forward to making my daily green smoothie later! Thank you mysterious gift giver!! :)

 I'm exhausted. I have big plans to sleep, watch funny movies and keep up on anti-nausea meds this weekend in hopes that I won't feel too bad. They say the worst of the nausea is day three...Sunday. We'll see. Thank you again for all the support and being my cheering committee! You guys are the best!


Thursday, May 8, 2014

Work, Surgery & Hope

I have been back to work post major abdominal surgery for 5 hours days since last for just over a week and am SO incredibly blessed by my co-workers! There were flowers on my desks, awesome cards and they all pitched in to get my a gorgeous Nashelle necklace that says "eff cancer." I work with amazing people!

Quite possibly the best part of working in the medical field right now is that I work with lots of nurses who are happy to answer questions about health, or discuss what chemo might be like. I feel less alone knowing all of my co-workers are there for me in this. Being back at work has given me some sense of normal again which makes the unknown and the fear dissipate enough to help other people and feel like I am contributing to the world again. Feeling a sense of normalcy is a huge relief!

Yesterday I had my power port put in through minor surgery, by the same surgeon who did my last surgery. She's incredibly comforting, kind and held my hand as we were waiting for the drugs to put me under. I also had a great nurse in the operating room today who told me about tropical beaches while I was going under so I might envision being on a great vacation during the surgery. If only...

And me, being silly, kept asking, "we can do it on the right side, right? I don't want to cut into my tattoo..." Important things like tattoos really matter. ;-) But it is a great tattoo...who wants to mess it up? Besides, I learned recently that peacocks are one of the only creatures that can ingest poison and live through it...I'm claiming my healing peacock abilities going into chemo!


The port will make everything easier from here on out...I can do blood draws, get drugs, fluids, etc. through this little bit of skin where the implant is under my collar bone instead of them picking at my poor veins anymore. I'm thrilled! I'm still home recovering - the pain feels like someone punched me in the collar bone and yanked on my shoulder. But the pain meds. finally started to kick in today.

The sad realization of the port...I can't kayak this summer. I've kayaked most weekends in the summer time for a few years...this is highly depressing. But that movement would move my chest/should and could dislodge the port. Too risky. Perhaps this will be the summer of having people paddle me around...needless to say, applications to paddle me around will be accepted... ;-)

Photo Credit
I also realized I haven't cried in a week (a fantastic break from the daily crying of before)! The tribe helps so much! I am so loved and that is one of the best medicines yet!

In a moment of honesty I finally voiced to a friend what scares me most is the possibility of what I might miss - that although I plan to fight like hell, that is still a possibility. We all die eventually, and we don't get a say in that necessarily...I could die from cancer, or get hit by a car...there are no guarantees in life, for any of us. But that doesn't make it any less scary...and having a major illness just throws death in your face in a way that really makes you think...and for that I am grateful. If I were to die suddenly in a car accident or something, you don't get the chance to think about what really matters, to make changes in your life prior, or to love your people well. Knowing I have the opportunity to really consider what I want my legacy to be, how I want to love people and how I want to spend my life (however long it is) is actually a gift. I am thankful for that. Would I chose cancer? Hell no. But I am grateful I didn't die on the operating table on March 17th when the mass had ruptured.

Hope, love and laughter are by far the great medicines and healing tools I have discovered yet. I truly am blessed by the tribe of incredible people who courageously, with raw emotion are diving into this beast with me. It is so nice to know I am not alone.

Thursday, May 1, 2014

Scary Moments & Miracles

I debated if I wanted to write this post. I've stopped myself a few times. Do I want to share the freak out moments? But then I decided, especially if someone else comes across my little blog and is hearing scary news and recently diagnosed with sarcoma or any cancer, I want them to know they're not alone. So I'm sharing...

When we were at OHSU last week, the CT scan showed some small tumors left from when the mass ruptured in my abdomen. Scary moment #1. We had hoped the scan would come clean. Then the doc said it's stage 4.  Panic set it. My life flashed before my eyes. Scary moment #2. Doc's recommendation - chemo - and the big guns kind starting soon. #3. I had let chemo cross my mind, but I am was not excited about it. At. All. The days since OHSU blurred together with most days involving tears, thinking the worst and reading HOURS of info. about cancer, chemo and alternative therapies.

Tuesday I met the doctors here again. First the oncologist, who asked for the update on my visit to OHSU and then showed me the CT scan. The little masses are in places that worry them that they too could rupture. They want to shrink them fast so they don't rupture adding more little bits of cancer spread further. He began explaining chemo - the heart test first, minor surgery to get the port put in , and chemo's risks and goals. We would start next week.

We talked questions, risks, side effects, fertility and hair. And in the end, I've decided to try it. I'll do a radical nutrition plan too (no dairy, no sugar, gluten free, limited red meat and no nightshades and focus on veggies). I'm scared. I don't have answers. I'm still reading and I plan to fight - not just with drugs, but with a lifestyle overhaul. Tomorrow I go in for an echo cardiogram heart test to see if I can handle the drug. Next week I'll have minor surgery to put the port in and then next Friday would be my first dose.

Perks of chemo? Potentially shrinking the tumors. Not having to shave my legs. Free Brazilians (do you know how expensive those are?) Perks, people! Humor and finding the bright side get me through it.

Last night I lost it. This whole thing still feels like a bad dream that I will get to wake up from. But today was bright - I went back to work for 5 hours and felt massively loved!! I am incredibly blessed by my tribe, my community and people's willingness to stand in this with me. The warrior woman in me is a fighter and my tribe is full of warriors of all kinds. I'm grateful and terrified at the same time, and my warrior woman cries, "I am woman! Back the f off cancer!!"

There are still miracles happening everyday...

1. Tribal support...there are fundraisers in the works by incredible people, people have offered to help in so many ways!
2. Gifts and encouragement encourage me daily!
3. I was given a $500 Help$ grant from The Northwest Sarcoma Foundation toward medical bills
4. I'm gaining more energy.
5. My warrior spirit is getting fiercer!

Tuesday, April 29, 2014

Right Now.

Lately the unknowns are bigger than the knowns; they sprawl out like cities stretching into the wilderness in an attempt to be more hip and with the times.  Even in the wilderness life still breathes and dances, adventures still happen.

Like this one...in an effort to take control of cancer, I'm starting to cut my hair...shoulder length first, then shorter. I was gifted this lovely cut by a dear friend Emily.


The past week has been a wild ride but I'm learning there is no road map to cancer. It is what it is and I can choose to find the beauty in every day...it's not always easy; the past weekend was a hot mess of tears, silence and trying to take it all in.  But here are some things I do know:

1.) I don't have words often. That's ok. I don't expect you to have words for it either. Hugs are much appreciated. You don't have to say a lot.
2.) Fear, tears, love, and laughter...are all part of the journey. I promise we're not sad all the time at our house...we still laugh.
3.) Expletives are an excellent choice of words regarding cancer. ;-)
4.) I'm going to fight like hell (Cheer me on, cheerleaders will make the best groupies for things like rough days...)!

What I'm Reading:

Crazy Sexy Cancer Survivor by Kris Carr
Crazy Sexy Cancer Tips by Kris Carr
Beating Cancer With Nutrition by Patrick Quillin
Knockout: Doctors Who Are Curing Cancer by Suzanne Somers 
Cancer: 50 Essential Things by Greg Anderson
Mind over Medicine by Lissa Rankin, MD
Take Control of Your Cancer: Integrating the Best of Alternative & Conventional Treatments by James Forsthye, MD
Essiac: A Native Herbal Cancer Remedy by Cynthia Olsen
Spontaneous Healing by Andrew Weil, MD

Plus great websites and blogs:
The Wellness Warrior (who has sarcoma too)

I'm heading back to work tomorrow. Five hours per day for the first few weeks, but that will be plenty. One day at a time. In the meantime, I'm working on a play list of bad-ass songs for my afternoon walks....what do you listen to when you need a boost??