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?

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.

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.

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.

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!

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!

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.

-Maya Angelou

 

I am inspired everyday by the people who read my blog, love me and support me. Going into tomorrow's chemo I feel strong, confident and well loved.  This time I'll have chemo Thursday, get the white blood cell shot Friday and fluids from Friday-Tuesday so hopefully the effects will be less horrific than last time.  I can hardly believe that it has been over two months since this whole crazy thing started with the emergency surgery...life is slowly starting to resemble some sense of normal...ok, that is still a stretch of the imagination, but I'm trying to make space for more normal in my life.
What is normal anyway? Aren't we all trying to make the best of what we have? Cancer, or not, I will dance like I have diamonds at the meeting of my thighs....what a legacy you leave behind, Ms. Angelou. I am inspired.