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.

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.

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!

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

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!

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.

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!