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 brain is a foggy place these days - which I beg you to keep in mind as I thoughts are so scattered 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 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'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 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 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'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 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'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 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'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 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 was perfect!

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