Friday, July 31, 2009

recycling our pain

it doesn't get any better than soaring through the sky hanging by your knees. trapeze school. who would've thought. i went on a good day, gave it my all, and felt like i got hit by a truck when i woke up the next day...but, in a good way. what an amazing experience. this is the first of many classes, so let me know if you wanna come with next won't regret it. i'm taking my little brother, seth, and my nephew, josh, this coming week...and it's gonna be awesome. i've also recruited my chemo nurses, theresa and kissen, to come...can't wait!

wednesday was my 10th chemo treatment. i have 2 more to go. i thought it would never end and now it's finally almost here. my doctor is leaning towards radiation because the main tumor in my chest cavity was quite large and they want to ensure that i don't have a recurrence. the plan is to get a PET/CT scan (yes, this is the one that i have to drink all that nasty liquid and then try not to pee my pants...don't think i'm above wearing an adult diaper) the week of september 14th and then meet with my doctor and the radiology oncologist the following week. they will then decide whether or not we move forward with radiation. the risks include the possibility of damage to my heart and lungs, so there's a lot to consider. radiation usually lasts 3-5 weeks and is everyday, but i don't think the side effects are like chemo. i think it just causes extreme fatigue and skin irritation. i'm completely at peace with radiation because i never want to go through chemo ever again. i felt amazing yesterday and now today, not so much. as much as i try to figure out a pattern, one never seems to form. i'm definitely ready to feel normal again.

"kill bad stuff" is my new baby. lindsey and i officially have a bigtime pro-bono lawyer and are on our way to becoming a non-profit corporation...soon to be "kill bad stuff, inc." we placed our first order of tank tops, men's, women's, and kid's tshirts...along with water bottles, car magnets, reusable grocery bags, pens, etc... we are constantly coming up with new designs, but because we are a non-profit, we are pinching our few pennies that we have. the website should be ready to take orders in about a week or so. it feels so amazing to do something that will encourage cancer patients to take a positive approach to their battle...and all the proceeds will go to helping those patients in financial need. we still haven't decided which charity our proceeds should go to, suggestions welcome. we are looking for one that specifically helps cancer patients and their families pay co-pays, deductibles, and other medical expenses. our goal is to create a contagious attitude and passion for life, no matter what obstacles we may face...and have fun while doing so.

our most recent stop on the kill cancer summer tour '09 brought us to Lake Norman, which is about 20 minutes outside of Charlotte, NC. We hung out with great friends, JoJo and Stephen, and experienced a beautiful part of the country...we even extended our trip a day. thanks guys for an amazing weekend!!

i have to take a time out right now to discuss something very near and dear to my heart, something i live with everyday, and something i am extremely disgusted with...chemo brain. if you think i'm making it up, google it. i had to write about it right now or i would forget. months back, i asked my nurse, theresa, if stupid was a side effect of chemo. turns out it is. i have issues with speaking because it's hard for me to get my words out properly, i forget what i'm saying mid-sentence, as well as forgetting everything in general. i have never had to write down things in my life. now, i don't know anything that's going on if it's not written down. the fun part is that i get to open my calendar and see what's on tap each day...not always a good surprise. i don't remember to call people back, i don't remember who i told what to, and i certainly can't remember if i've blogged about chemo brain before or not. it can last up until a year after treatment, thank God it's just temporary...but, it's official. i'm stupid.

kristin and i went to see billy joel/elton john at the Nats stadium where we had amazing seats on the field...and belted out all of billy's songs like good long island girls should.

we also had tim, vanessa, and baby makayla come visit from long island. they have an amazing story of love, generosity, and patience. vanessa donated her kidney to tim shortly after they were married. after many years of trying to have a baby and several rounds of in vitro, makayla joy finally arrived. i know every parent is in love with their child, but the look on tim's face when he looks at his baby girl is priceless. they have taught me about patience. joey and tim golfed while us girls got pedicures and caught up on life. we know it wasn't easy to travel with a new baby, but it meant the world to us.

i've been up for five hours now...trying to convince myself to drink the 48 oz of water sitting in front of me. i drink about 120 oz everyday and yet my cotton mouth never seems to go away. i could really use a nap right about now, but the steroids have me wired. not a fun combination. i won't get into any gross details, but it's funny how excited you can get over some things. it's crazy that this is my life when i really stop and think about it. i don't diminish cancer in the least. i call mine the "easy cancer" because i know how my story ends. i don't worry about the future, upcoming treatments, getting sick, or the possibility of dying...and yet i know that reality is all too evident in other cancer patients' lives. my heart truly goes out to them. just 2 days ago, jay's father, who had cancer and some heart problems, passed away. joey and jay grew up on the same block on the eastside of seattle most of their lives. i can't even begin to comprehend the pain that he must be feeling right now.

too often we take life for granted. we aren't owed a long prosperous life with a happy ending. we have to take what we get and make the most of it. that's easy to say coming from the girl with the "easy cancer," but i truly believe it.

No one rolls out the red carpet and invites tragedy into their life, but our greatest gifts and passions are often the byproduct of our worst tragedies and failures. Trials have a way of helping us rediscover our purpose in life. -Mark Batterson

Friday, July 3, 2009

do not fear death so much, but rather the inadequate life

no matter what kind of cancer you have, death always will cross your mind. i am certainly not scared of dying, but i can't help but think what my legacy would be. it doesn't help that i have all the time in the world to sit and think on chemo weeks. but, it's good for me. it causes me to reflect on the kind of wife/friend/relative that i am and the one i strive to be. i want to make a lasting impression when i'm gone. this isn't me getting all morbid either, i know i'm not dying for a looooong time. i just realized that it's not enough for me to just be yet another person on this earth who lives for their own selfish gain. i want to make a difference. if i just get married, work, have kids, and die when i'm 90, i won't have lived up to my potential. yes, i can make a difference in my everyday life, but that's not enough...not for me. Colleen Wolak is a perfect example of this. so is Kristin Hodulick. both of their lives have been impacted by friends and relatives who have/had cancer. they are constantly doing fundraisers and running marathons to raise tens of thousands of dollars to help those who are suffering. i certainly don't think that's for everyone, but it's their thing and they make a difference...and it's inspiring.

so, i'm gonna get on a soap box for a second and say that the "woe is me" attitude is just plain sickening. no where is it written that life is it fair that i got cancer? sure, it is. why should cancer discriminate? cuz i'm young? please! it's way better to get cancer when you're young. It's easier to fight and it changes your entire outlook on life. plus, look at all the experiences we've been accumulating. joey and i went to Charleston, Savannah, Isle of Palms...and before that trip, we even went to the ballet at the Kennedy center (big one for joey). i am trying new okra instead of french fries and a whole grouper with the bones still in it. we took carriage rides around the town, listened to locals sing and dance down on the pier...and of course i got it on video:

okay, rant over. back to cancer update for a moment. i've been having some issues with my breathing so they took me off the "B" of my ABVD treatment. "B" is the bleomycin that can cause lung hardening. i had a second pulmonary function test which showed a decrease in my DLCO, which is the ability to take oxygen and exchange it for carbon dioxide. so, the bleo is being left out. i have lots of marathons to run when this cancer crap is, better safe, than sorry. my red blood count has also been slowly and steadily declining, which just means that i'm slowly becoming anemic.....which really just means i'm getting more and more tired. i can deal with tired as long as i get my 2 mile run in first and if i can't run, then i'll walk, and if i can't walk, i just watch Fit TV and kill calories by osmosis.

my doctor told joey and i that i need to be in remission for 2 years before we can try to have babies. i originally shrugged that off until my nurse, theresa, agreed with him. she said that i probably don't want a baby with three heads. but maybe i would be like having triplets but with only one college tuition. okay, so maybe i'm using humor to mask the fact that i don't wanna wait two years. but since when is any of this about what i want? so, i'm changing my mindset. what can i accomplish in the next two years or so? well, for starters, i am starting a business with my friend Lindsey who has been there since the beginning. we are going to empower and inspire cancer patients and their friends and families with our "kill cancer" gear. we are taking a proactive approach. no whining about how cancer sucks...we are just gonna help kill it. so, check out our website: Lindsey also started giving me my injections lately which i think she enjoys waaay too much.

will running marathons for charity be my legacy? will my company? who knows. i do know, however, that i have the ability to choose my attitude and outlook and that leaves a lasting impression. the following is an email that i received from my nurse, theresa, who just so happens to go to our church...

" I had to say goodbye to a beloved patient. I hate that part. I will see his obit soon. Rachel- one day I will see you as a cancer free girl and I am grateful, joyful and praising Jesus for that. One day we will see each other at the clinic for hello's and not chemo. I will see you at church being a cancer free momma in waiting. That is really cool. I write this because I started reading Lion Chaser and I am inspired to love you cancer people more! I am blessed to meet some awesome people and I count you and Joe among the really cool.

...thanks for the gifts, tee shirts, coffee (medicinal syrup), hand soap, smiles, laugh, blog, looking forward to seeing you moments. Thanks, you are too good to me and I appreciated it. Thanks for being Rachel the Lion Chaser and inviting me to join in your kill cancer journey!"

if only they didn't weigh you, poison you, and harpoon you with huge needles at the cancer center, i would thoroughly enjoy going to visit my nurses. "kissen" and theresa always make me laugh and getting an email like that one just makes my day. every action of every day makes a difference. i am going to live my life with no regrets and certainly no self-pity. everyday uncovers yet another redeeming aspect of cancer. if only everyone could be so lucky.

To laugh often and much; to win the respect of intelligent people and the affection of children; to earn the appreciation of honest critics and endure the betrayal of false friends; to appreciate beauty, to find the best in others; to leave the world a bit better, whether by a healthy child, a garden patch or a redeemed social condition; to know even one life has breathed easier because you lived. This is to have succeeded. - Ralph Waldo Emerson