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.

Cancer Diagnosis

(Sarcoma's color is yellow...FYI)

I was officially diagnosed with undifferentiated sarcoma on Tuesday April 16th after the pathology from my surgery went through three different hospitals. Sarcoma is a rare cancer; only 1300-1500 cases in the U.S. each year, and there are nearly 100 different types. Mine is "undifferentiated," meaning they can't determine what the origin is yet. Normally sarcomas are seen in young children and the elderly, and the "young adult cancers" (hitting 19-40 year olds) are less discussed. The oncologist said I'm "special" and this is not the kind of special a girl dreams of being....

My oncologist explained as much as he could to my mom and me on Tuesday morning, but there is still much unknown. I go in for another CT scan today to see if they got all the cancer out, or if it is still growing post-surgery, or if it has spread. Next week we'll go to Portland to meet the Sarcoma specialist at OHSU. I'm hoping for more information, for options, for massive amounts of hope.

Getting a cancer diagnosis is scary anytime, but being just barely 31, knowing that cancer is a nasty beast, I'm determined to be nastier, to fight hard and be one bad-ass cancer warrior! I'm really thinking about documenting the journey...to give hope, insight and courage to other young adults fighting sarcoma because as I've been researching I've found very little from young adults battling this type of cancer. It feels very lonely so far. I'm thankful for my tribe, but there is still a deep longing to connect with other young adult sarcoma survivors.

It still feels so surreal to write that word: cancer. It feels like any minute I'll wake up from a bad dream, or my oncologist will walk in and say "you've been punked!" How can I feel so much better than I did before my emergency surgery (for a month prior to surgery I couldn't eat, it hurt to lay down, and it was horribly painful to walk or move) and have cancer? I feel so much better!

In this on-going waiting game, I continue to read - books on nutrition to beat cancer, websites and articles by survivors who combined alternative treatments with conventional methods, and I pin tips I want to remember for later. I'm trying to gain as much information as possible before we meet with the specialist next week so I can be informed in my decision making. Information is power, hope and inspiration.

 I've also decided to change the cancer vocabulary:

1. "The Big C" - nope, it's the little c, I'm not giving cancer that much power.
2. "Cancer victim" - I call bs, I'm a survivor already!
3. "Cancer is a death sentence" - cancer is a wake-up call.
4. "Cancer is so depressing" - I can choose how I respond to cancer.
5. "Cancer is scary" - and yet I won't let fear rule my life.

Cancer will drastically change my life, but it doesn't get the last word. I am empowered and inspired in there (even though there are terrifying moments).

What great books/articles/websites have you read about cancer?

The C-Word & William Wallace

The C-word has hung in the air for awhile. One morning while in the hospital, a tall brown haired man showed up at 7am at the foot of my bed and squeezed my toe. I ignored him at first, thinking it was the result of pain medicine like the spider dreams I'd had the day prior. Then he introduced himself. He was an oncologist and although they weren't certain what the mass was, he had come by to introduce himself to my mom and me and let us know we would work together to figure it out.

Mom and I looked at each other, taking in the word. Oncology meant cancer. That hadn't crossed our minds yet. I burst into tears.

A few days later my surgeon returned to check on me, asking if I'd met the oncologist. I still tried to shrug him off as part of my drug-induced dreams, perhaps he really was a figment of my imagination. But Erin, my surgeon, said that the local hospital couldn't figure it out in pathology and would be sending it on to OHSU (Oregon Health Sciences University) to see what it was, but since it was spring break we would have to wait two weeks for results.

The waiting game began. I was discharged to go to my parents where my days were spent sleeping, reading, faithfully monitoring Facebook and Pinterest to keep my mind off the what if questions for nearly two weeks.

Last Friday when I went to see Erin to get the staples removed, she dropped into the chair, looked at me and said, "Well...it's cancer, but we don't know what kind. We had to send it to the Mayo Clinic so we should know more in a week."

There was that damn c-word again, only now paired with the looming phrase "Mayo Clinic." I'd been to Mayo once to visit a college friend who was a nurse there. It is a beautiful building to someone simply visiting; to someone on the brink of a cancer diagnosis, it's terrifying. Mayo is the big-wigs of medical research....where you go when no one knows what's wrong with you and other doctors see you as beyond their scope.

My eyes welled. Fucking c-word. The waiting game continues.

I cried with my parents in the car. We drove down to the river and watched the sunshine cast diamonds on the water. Just keep breathing.

I quit using my walker that day, my determined spirit bound to do something on my own for the first time in weeks. Perhaps that is the lesson for a woman who is so highly independent I have a hard time asking for help. I have been able to do nothing on my own for weeks - bathe, prepare meals, get out of a chair, get dressed, carry anything...it's so humbling.

That evening I tried putting Neosporin on the visible parts of my wound where there is no paper-tape and nearly fainted...the wound isn't fully closed in parts yet and it made me woozy. My dear mom had to bandage me up as she has the past two weeks.

Everything feels woozy. Tears come out of no where constantly. I'd rather have some definite "yes" or "no" to wrap my head around, the waiting game is so difficult. In the mean time I read...books on nutrition for cancer, blogs on cancer and career, recovery stories, inspiration quotes and I meditate.

One of the books said that visualization is highly important and to imagine sharks eating your cancer cells. I've decided it's much more effective to imagine William Wallace leading his army to attack cancer anyway...

Happiness is a Choice I Make...

Earlier this week I began to to ask a powerful question...what if I invited my tribe into this journey? I wanted to find a way that we could explore the realm of bliss together...

Life is a series of circumstances and events - good and bad. Our job is to choose happy, to find a way to choose to see beauty in the world, to find our happy. "The more you retrain yourself to choose happy, over fear, the more blissful you will be" - Gabby Bernstein, Miracles Now.

**This weeks goal is to sell 18 more unisex shirts. They are available with my story here.**

Less than 48 hours ago I decided to choose happy and invite my tribe to do it too, to follow our bliss together. I created a shirt fundraiser to inspire all of us and help cover bills post surgery. What amazed me most in this is that within 30 hours, the fundraiser had sold 52 of the 100 shirt goal. BLOWN AWAY! But even more, I was blown away by the gifts, the kind words and the reminder about my purpose and how loved I am.

It's truly humbling for a highly independent woman to learn to ask for help in EVERYTHING (bathing, dressing, getting around, covering costs, and processing big life events) and I'm learning, when you ask, the tribe wants to show up! What a gift! I am so very grateful for all of you.

I am choosing happy because I know that bliss is what gets us through the hard times, and that it is in letting go of our fears, embracing our tribe and choosing to find a happy place, that miracles really do happen.

31 Things

In honor of my 31st birthday today, here are 31 things I am completely grateful for and excited about:

1. My amazing tribe of family and friends who have supported, cared for, loved me the past few months.

2. My incredible medical team - the doctor at  Urgent Care who finally figured out what was wrong and sent me to the hospital for surgery, and my incredible surgeon.

3. My family being close by so I could live with them while I recover.

4. Our family cat, my snuggly nurse.

5. Friends who have encouraged, supported and inspired me!

6. The timing of this emergency....mom was on spring break, so she had a week off and could stay with me in the hospital and care for me at home for most of it.

7. For my dad and sister who's schedules are flexible enough to help with all the random things I needed...checking on my apartment, getting my mail, etc.

8. Having incredible insurance!

9. Having an incredible job and company who is eager for me to return to work when I am well and has been super supportive in the process.

10. Walking for the first time in two weeks without a walker yesterday when I went to the doctor to get my staples out!!

11. Sunshine and blue sky.

12. Bird songs in the morning.

13. Time to read, write, sleep and meditate.

14. Mom's home cooked food.

15. Cards, gifts, flowers, visits and love. Lots of love. :)

16. I was given the okay to start walking more...looking forward to VERY SLOW (to start) walks on the river trail in the weeks to come...looking forward to fresh air!

17. Ginger tea. Enough said.

18. A fresh take on this grand adventure we call life.

19. The power of our bodies to heal, renew and amaze us!

20. Coconut body butter.

21. Pinterest. While sitting in my recliner, I've been planning vacations, gardens and menus with that! It's magical!

22. Knowing I'm not alone.

23. Kayak season is closer...looking forward to it already!

24. Being off coffee/caffeine 40 days so far....massive stomach pain gets you off certain vices.

25. Laughter doesn't hurt as bad anymore...thank god! Belly laughs are such good medicine and my family is great at making sure I get some daily.

26. Soon I'll be able to sit up in a straighter chair and PAINT! I can't wait!! Watercolors here I come!

27. Food tastes good for the first time in over a month and I can keep it down. I can also lay on my sides for short periods for the first time in 1.5 months. Pure bliss!!

28. Looking forward to hugging, snuggling, visiting, laughing and loving on my tribe.

29. Farmers markets will start soon - organic produce!! YUM!!

30. Sunshine and feeling a bit stronger means soon I'll be able to sit on the patio in the fresh air.

31. This too shall pass. My mantra for right now.