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.
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.
Sunday, June 22, 2014
|Photo by Alisa Hayes Photography|
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!
Monday, June 2, 2014
|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!