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.

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.

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!

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?? 

OHSU

Wednesday we went to OHSU's Center for Health & Healing for  the first time. We checked-in at Oncology and I couldn't help thinking over and over in my head...this isn't right. I was by far the youngest person in the waiting room.

I was still in disbelief...even to the point of making bad jokes - when asked if I had the new patient paperwork, I called it the "welcome packet." No one thought it was funny. 

The Sarcoma specialist told us about the same information we had heard - it's sarcoma but they are still unsure of its origin....and the bad news: the ct scan last Friday showed that when the mass ruptured, it left residual cancer in my abdomen; surgery didn't get it all. 

The doctor was compassionate and kind and recommended chemo.  I could do chemo at home with my doctor and check in at OHSU in June to see if it was working. We were so in shock all the questions I had planned to ask slipped my mind and all I could do was say "ok" and cry.  Mom did ask about alternative options..specifically nutrition. The response: you can't starve cancer. You just need to eat. I'm not buying that.

We just sat there. Mom, Dad and me. Totally stunned. The rest of the afternoon was a blur of social workers and nurses giving us their cards, resource lists. I texted my sister. We tried to take a breath by having lunch at Papa Hayden's in Sellwood before driving home.

Today I've been taking it all in, sitting with what cancer means. Reading about the importance of nutrition and potential alternative therapies and hope-filled stories of survivors. There is still a lot to consider based on all the books I've been reading the past month and a half. Tuesday I'll see the surgeon for the final ok to go back to work on Wednesday. I'll also see the oncologist Tuesday in Bend to learn more about chemo before I make my decision. 

In the meantime, our house fluctuates between crying and laughing...life still happens. Cancer doesn't stop that. The journey continues. Thank you for all the prayers, encouragement, assistance and kindness. I am absolutely blown away by the tribe that we have.