Tuesday, December 16, 2014

senor change

I frequently say that cancer changed me. But maybe it just coincided with a time I was growing anyways and I would be who I am today without it. Maybe it was the push I needed to become who I want to be. Maybe it was the excuse I was waiting for. Maybe.

What's for sure is a change. I think some people find parts of me now unrecognizable. I think some parts are the same. 

I received a letter recently that made me reflect on this from the person who knows me better than anyone else in the world. He said the glimpses of who I was complement the new bits of me. I am thankful that there are unfamiliar pieces to me. It means I've changed. It means I've grown.

I lived to please. My happiness came from others happiness, often involving sacrifice on my part. I was always obedient, even to those who had no authority to control me. I listened and did was I was asked, always feeling incongruence to a voice inside of me wanting a different way. I never spoke out or spoke up. 
I remember the first time I did though. It happened after I had created somewhat of a safe bubble to survive cancer in was threatened. I had a choice to float off in another's direction or stick to my plan. I stuck. I stuck once and have been sticking since. I mindfully rebel- because I learned the difference between selfishness and self-preservation. 

I don't need the praise and approval of others for worth. My spirit comes from learning myself and loving myself. Being honest with my flaws and working my weaknesses, while appreciating who they created when combined with the good parts. 

I am not a girlfriend or a daughter. I'm not a sister or a patient. These are roles I'm in but offer little praise to the generous, slow listening, squirmy, growing, smiling, curious, one of a kind of woman I am. I'm tangled in no one but me- making me responsible for my needs, wants, choices, thoughts, and emotions. It also relives me of the responsibility of all those things for anyone else. My heart is plenty for me to control.

My character is without threat when I am in control of myself. I don't carry negative burdens from others because I choose not to. My relationships are loving because I invite love and not abusive because abuse is uninvited. Love comes from a place for respect and freedom, with the same pure intentions I love out.

Along with control of my heart and mind comes control of my body. My body is incredible and carried me through hell and I choose to honor it and cherish it, actions I didn't do before. I choose not to partake in situations that make it feel small, foolish, or anything less than the miracle it is like I have in the past. It is a new body for me to grow into before anyone else has the chance, with great tenderness and love.

I am strong and brave and continuously growing. I choose to forgive others and finally myself as well. My spirit is without compromise and my body has many, many years left to offer.

Monday, November 17, 2014

We get by with a little help from our friends

“They told me not to worry about it.”
These are the words my friend used to sum up a recent doctor’s appointment she had. This friend was someone who was present for every minute of my fight against cancer, from diagnosis to clear scan, so when she found a lump in her own breast she went right in to have it examined. Her doctor said there was definitely a lump, ordered an ultrasound and mammogram for her, and sent her home with a “don’t worry about it.”
Empty phrases like that, along with “I’m sure it’s nothing,” “God wouldn’t give you more than you can handle,” and various others are often shared to offer peace and comfort. In reality they usually invite a daydream involving punches to the speaker’s face. I understand why the average Joe says them, it’s what we’ve been trained to do. You fill the uncomfortable spaces that follow bad news with anything you can. But I find it particularly aggravating when a doctor says this. Are you sharing this because you’ve already felt 10 lumps in other breasts today, and know that the majority of them are actually nothing to worry about? Because to me that feels like you are minimizing my feelings surrounding a serious topic. Are you saying that because it’s what you think I want to hear? Well let me make something clear to you doctor: that is not what I want to hear.
So my friend takes her prescribed tests and the number to call for scheduling them. The first location offered her an appointment in a week and a half, and the second had space for her in three weeks.  I wish hearing their schedule availability was as shocking to me as it was to her. When I found a lump in my breast, I was told I could be seen four days later. When I found the lump I also found this borderline crazy; the leading lady within myself marched into the doctor’s office that very same day and demanded to be seen even though my appointment was days away. And when I was told I would have to wait a week for an ultrasound, you better believe I called other offices until I found one that would see me in two days. I told her it probably would be fine to wait a week for the next appointment, but I had to make sure she knew that if she was feeling as crazy as I did there were other options.
To say I received incredible medical care would be an understatement. I was also the patient that made a name for her self in the hospital—I made friends with everyone. So when my best friend called me with an all too familiar situation my first instinct was to get her to “my people”. I made a phone call to one of my nurses and explained the situation. I sang the hospital’s praises, and then bluntly said that I knew we could figure out a better option for my friend. The nurse gave me a number to call, a specific person to talk to, and the right names to drop.  My friend made the phone call, followed my nurse’s instructions, and suddenly had an appointment for 8:30 the next morning.
Why did I have to make a phone call for my friend’s health to be handled in a serious, timely manner?
I understand that much of life is about who you know, but is this really true when it comes to our health? When I was begging hospitals all over the country to treat me with radiation, after my own hospital turned me away for being too high-risk, the only reason I found a place that would take me was because of a phone call made on my behalf. When I called on my own I heard for the hundredth time that I didn’t qualify. I happened to be very close to one of the lawyers for this particular hospital and when she initiated a call, acting as my advocate as she talked to their head doctor, we almost immediately heard a ‘yes.’ I was able to receive the treatment I needed because of who I knew, just like how my friend was made a priority because of who she knew.
But what about all of the people who don’t know someone? Who informs patients of what’s available to them? Who ensures that each patient gets the highest standard of treatment they deserve?
Sadly, there seems to be a lack of resources to answer these questions. I have been treated at the best hospitals—but at times, even under fantastic care, I found a difference in what I knew was available for me and what actually was available for me. So who spoke on my behalf the majority of the time? I did.
Cancer was the first time in my life where I had to be an advocate for myself. Maybe it’s pathetic that it took a threat to my life to learn to speak up, but regardless it’s a lesson I will never forget. I pray that you learn from my experience before finding yourself in a similar one. I went from a girl who accepted the answers she was fed to a woman who demanded the ones she wanted. From day one I saw that no one else was going to do it for me, so it was either take the wheel or spin out of control. It didn’t take courage. It didn’t take status. All it took was opening my mouth.
If there is something troubling you about your health, confront it. If you don’t think your chemo nurse is giving you the care you need, ask for a new one. If you’re not getting answers, demand them. Hospitals are full of loving people who are usually willing to meet your needs—you just have to express them. You can’t assume that others will advocate for you and you don’t have to settle on answer A without seeking B, C, and D.
Speak up. Be your own advocate. You are in control of your own health and life.


Saturday, November 1, 2014

high-low, high-low, doo-doo-da-doo-doo-doo

This week my bandages came off for the last time. I hope that some of the weight from the last 19 months go away with them. I know I have ??? years of hormone therapy and check ups ahead, but the surgery I had in September was the last part of my in hospital treatment plan that was created over a year an a half ago. It's finally time to experience life after treatment. Swallowing a pill is all that hormone therapy asks of me and thousands of people do the exact same action daily with vitamins or tylenol. I only have to do something lots of people do. I believe that means I'm only required to do something completely normal.  A life without looming surgeries or daily trips to the hospital. THAT SOUNDS TOO DAMN GOOD.
So I reflect. To look at where I was and where I am. As a reminder of why every day I wake up healthy and happy is a day to give thanks. And to keep a little fear in me so I do everything in my power to prevent reoccurrence.

Cancer lows and cancer highs through a little chatting and a lot of selfies.


May 2013
Low: Diagnosis, fondling by dozens of strangers, 
chemo begins. 
High: NT girls hike the Grand Canyon rim to rim and rep "Love Conquers All" as they do it.




June 2013
Low: Signature mane falls out. Nothing is private about my body anymore/detachment to cope.
High: I make bald work for me.




July 2013
Low: Emotions are officially out of control/hormones, hormones everywhere .
High: Round 1 of chemo ends and we celebrate Christmas in July. 




August 2013
Low: Unable to name reasons to keep fighting, Anna leaves.
High: Shipped off to NYC and CA in hopes of refueling/Cymbalta'd up as an attempt to balance out.




September 2013
Low: All 20 nails are officially gone and replaced with numb toes and useless fingers. Mastectomy talk begins.
High: Theme-o is born & life does a 180.




October 2013
Low: Physically/mentally at weakest, on bedrest, quit my job.
High: FINISHED CHEMO, Colin Meyer enters life.



November 2013
Low: Double mastectomy + axillary dissection, body is unrecognizable.
High: Clear post-op path report!!!





December 2013
Low: How is this feminine? Human? Recovery is hell.
High: Healthy enough for Christmas in Cali





January 2014
 Low: Radiation drama, begging hospitals all over the country to treat me before CDH agrees. Scans/appointments/all hands and eyes on my body resume.
High: 20 doctor less days.





February 2014
Low: Living at CDH

High: Weekend in Massachusettes + a comical symptom. Lymphedema/baby hand brings joy to all who see it and Anna is a stud at her first NESCACs.




March 2014
 Low: Radiation/spending every day at the hospital drains spirit and body, once again struggling to find the desire to live.
High: Finally a hospital gown I can work with




April 2014
Low: Liquids only, gooey/fried skin. 
High: Healing begins.




May 2014
Low: Starting hormone therapy makes me nauseous and emo, "was fighting to stay alive worth it?"

High: Post radiation party.




June 2014
Low: Goodbye to the 19 biggest reasons that made hanging on worth it

High: Justin Timberlake circa 1999 is alive and well.



July 2014
Low: Test results concern my doctor and heart/mind decide they want to start processing the past year while I'm trying to Hakuna Matata around paradise.

 High: Central America because I earned it.



August 2014
Low: Leaving everyone who took care of me and constantly provided love to process and start over on my own.
High: Put my time with cancer to use with Reimagine, finally thankful to be alive, fresh start.




September 2014
Low: More surgery/resume patient life.

High: Work with cancer patients/survivors/caregivers to improve the cancer experience. 



October 2014
 Low: A month of gauze and nipple guards. Leg incision reopens. My body once again is more science experiment than human. 

High: Active treatment ends and it's all preventative treatment from here out!!!



November 2014
Low: What to vegans eat on Thanksgiving?

High: Final bandages are removed and I can claim MY new and HEALED body. I want to be more modest again and private with it, treating my body as the sacred masterpiece that it is. I'm proud of what it carried me through and am enjoying the chance to get to know it and celebrate it.  






"...and the scars that mark my body, they're silver and gold."


Friday, October 3, 2014

all wrapped up and so many places to go

I hate recovery periods. I've had months of lying in bed and I am anxious to resume life. My third day post surgery feels more like my 509th day post diagnosis. Everything went well and I officially made it through my last one..sie. Can't wait to get back to work and see the ocean. In the meantime it is wonderful to see my friends from the midwest/east. I have been missing you. Putting more than a quick drive between us sucks. Come west soon.




I'm on assignment from EH to finish my list of 100 reasons why I'm thankful cancer happened. The kick in the butt I've needed. I could ramble bamble about how I'm doing post op, but energy is low so here's an attempt to be productive between naps and appointments. 
The final 25:

76. TLC in the hospital. I think the medical world gets a bad rep for the care they provide. People are quick to share the time they waited two hours for an appointment or how their doctor sent them for the wrong tests, but not as many share positive hospital experiences. We're almost trained to think that doctors don't really care for us and to always be on guard around them. Well after months of crying in their arms, getting weekend check ins, and seeing staff in fuzzy mustaches to show support, I can assure you that this is not the case. Sure, not all doctors and nurses are always warm and fuzzy, but neither are you. I have had over 100 appointments in the past year and I can only recall three of them that went poorly (all three times were at unfamiliar locations). My medical team grew to be my family. It's an odd thing to miss a hospital but I truly do. The friendly faces and warm hugs from CDH and Evanston Hospital will always feel like home to me. Both locations had people on the ground with me when I crumbled and feeding me cake when I was victorious. My mom recorded me post surgery this time and I couldn't thank my nurse Rita enough for all the TLC she gave me. I was out of my mind on drugs but I had no problem recognizing the way she made me feel safe. Have a great doctor? Did a nurse take good care of you? Thank them. They can't hear it enough.

77. Access to knowledge and resources. People who have no reason to care are happy to share all they can in the interest of my health. I met a man on the plane last week who immediately emailed me everything he had on going vegan when I mentioned the switch I needed to make to be on top of prevention. I have Dave Sims sending me helpful videos up the wahzoo and my job has plenty of resources to contact and look through. I'm thankful for the ways that people and various resources are willing to help me now, even aggressively at times, live my best life.

78. I've said it before and I'll say it again: I love having an excuse to bring people together. It's easy to blow off plans because you're tired/stresses/etc- I do it all the time. No one blew off "my last night before surgery" plans though. I'm very fortunate to have so many great friends and I love when we are gathered together.

79. Love the way I want to. When you look death in the eye, it makes you change the way you treat others. When people are aware that this happened, they are sensitive to that change. I have always been a lover. Over the top at times, an enthusiastic, big time lover. I have always tried to make sure all of my relationships know their value but I put even more into that now. Since people witnessed what I went through, I think it has made them more accepting and even inviting of this big love. I think they saw me get a second chance at life and are willing to let me live it and share it the way I want to. Love without being told to hold back. That's a gift I cherish.

80. Love the way they want to. I think seeing someone you care about fight cancer helps you let your guard down a little with your own feelings too. My family, friends, and I have gotten much closer. No one is afraid to tell the other how they feel and every interaction ends with "I love you." My friends and I have become much more affectionate. We all share a little more openly now and I really enjoy that. It's nice to repeatedly hear "I love you" and "Ok, one more hug!" No shame in the lovefest happenings here :)


81. I'm a much better listener. I've always tried to be a friend who is there for anyone in need. I always had a lot of people reaching out for my help so I thought I was doing a good job. I didn't know how much of an advice giver and how terrible of a listener I was until I needed any ear I could find. When I tried to talk about what was going on in my life, a million quotes and bits of encouragement were shoved down my throat before I could even finish. I never expected the person I was trying to talk to to fix my problem; I just needed to be heard. It's our nature to gab, any desperate attempt at saving someone instead of just we sitting in an uncomfortable emotion with them. I'm trying to remember that when people come to me now.

82. Same people, new relationship. I really like the way my relationships changed when I was sick. Some fizzled out-that happens in life. Most of them flourished. My favorite were the ones that surprised me. A perfect example is my friend Wills. Wills and I have been "friends" for over four years now but we never had any real tie or common ground. We just hung out with the same people and therefore saw each other a lot. Zip forward to October 2nd, 2014, and the same Wills is one of my best friends. He has become much more than a snax monster. Wills is my go to when I want to have fun and a mix tape master when I need tunes. He hosted an epic balloon fight send off party for me and keeps showing me reasons why he should be one of my all-time favorite dudes and friends. He's been at every post party I've had and was happy to relax up north with me to distract from preop nerves. So happy to have ya, Wills.

83. A different perspective. I've only ever known my own reality and I'm not sure I've cared too much for anything outside of it. I'm empathetic and sympathetic, but I don't know how much the experiences others have impact me unless I see them happening. I've gotten a lot of that over the past year and I know I didn't even see half of it. But I saw everything from my parents hurting to my friends full of fear to pure excitement over a chance to rub my bald head. All of those moments are pressed into my memory. And because of that, a need to dive further into their experiences developed (when I was emotionally ready to). I've never lived cancer as a caregiver so I can only guess what it's like. Guessing isn't good enough when you're trying to help others. It's been really interesting to get into conversations with those who fought along side of me. I don't think I would care as much about their story if I didn't care for them- not because I'm coldhearted, I just couldn't relate. But when my loved ones hurt though, I hurt. And when they celebrate you better believe I'm happy dancing next to them. I'm not confident that I could best help future patients without being able to help those that take care of them. Your support was make-it-or-break-it in my fight and I know that's the case with other patients too. While I'm sorry to put y'all through this, I'm thankful for the added perspective it's given me.

84. When people wanna hear your story they occasionally want to see your face too. I'm not used to photo shoots, but I did really enjoy the one that my friends and family got to be a part of. Thank you for participating in this awkward/fun event!

85. That same photo shoot was also my first time reconnecting with my (second?) cousin Paul. I've seen him more in the past month than I have in my whole life. So happy to have family out in California with me. I love the Christiansen clan and all of it's branches. LA can be a weird place so it's nice to see a friendly face. Gotta keep the Wisconsin in us alive!!

86.  Puppy therapy. We got a puppy last October. Pets are always a gift but it has been really neat to see the way Presley takes care of me. My parents were almost frustrated at first with how much she seemed to love me more than them. I think she sensed I needed extra love. That little nugget has been such a good snugglebug and keeps me smiling. When I came back for surgery it had been almost two months since I saw her last. Our first moment back together involved a thousand kisses and multiple pees. Being loved feels great. I didn't see her again until after my surgery and everyone was nervous about her being too excited and hurting me. But little P has been nothing but gentle, licked my tears, and stuck with me every night. A list of 100 reason why I'm thankful Presley happened would be a breeze. A new appreciation for four legged friends. Know someone hurting? Try puppy therapy. Even if it's just a trip to a pet store to play with them.

87. Reimagine! Cancer welcomed me into another family- my Reimagine family! The folks in my office are amazing. Even all of the hot shot athletic teams I've been on don't compare the level of motivation and effort this group is putting towards the same goal. It's fun to dream dreams with others. It's even better working together to make them come true. 

88. PCS- With Reimagine comes my new job title: Professional Cancer Survivor. I've met many deserving of this title but none who get to write it on their tax forms. I love getting to apply life experience to my job AND incorporate everyone I love into it. Every day is "how can we be a positive force in the life of a cancer patient?" They created a role for me and I'm working to own it. I LOVE getting to say "professional cancer survivor" when people ask my occupation.


89. Bizniz. Another for my new job- I have no experience in the business world but cancer nudged me into it. I spend more time in meetings making notes of words to google later than contributing, but I really love the opportunity to learn about business. It's not my strength but I'm enjoying the challenge. Aaaaand looking forward to the day that I catch up.

90. Fields of sunnies. A totally unnecessary but VERY appreciated perk is all of the beautiful flowers that show up. I never get tired of seeing sunnies. A little plant can go a surprisingly long way. Every morning starts with a smile because of my delightful bedside bouquet from the Schmitz fam. I loved the bunch that most recently showed up so much that my first instinct was to figure out a way I could have them in bed with me (pain meds are weird + I REALLY LOVE SUNFLOWERS).

91. Puberty 2.0. Puberty: a time where you go through crazy changes physically and emotionally. You feel out of control of what's going on inside of you. You react in ways you can't explain. And one day you wake up in a unrecognizable body that you're suddenly in charge of. Most of us cringe at the thought of this time and would never wish to redo it. The word "puberty" kinda makes me gag. Cancer has a lot of similarities. Chemo started the screwing with my hormones and Tamoxifen has kept it up. My body has been altered from all five treatments. I've been hit with emotions that felt so out of my control. And in a month my bandages will be removed for the last time and I'll have another new body to figure out. I'm actually excited for that day this time around. I became so detached from my physical self over the past year to cope with all the examining and altering. Knowing the final planned changed is behind me has me doing cartwheels (or will have me doing them once I'm healed). I have a whole new body to get to know/embrace and I'm actually looking forward to doing so. It happened so awkwardly the first time. I'm stoked on a own-my-bod do-over. It's an important part to being a strong woman and healthy human. I'll take bandages over figuring out where a tampon goes any day. Fingers crossed for a more graceful transformation this time around.


92. Driving. I have spent so much time in a car since diagnosis. Appointments are anywhere from 10 minutes to an hour and a half away and I've always been driven to them. Love the time with my chauffeurs but I love the ability to drive myself even more. I give thanks almost every time I get behind the wheel for being healthy enough to be independent. 
(I'm realizing I could have just made a list of 100 things I used to take for granted but no longer do.) 

93. A platform. Everyone has a story to share but most don't get the opportunity to. When you experience something like cancer, people are more willing to give you an ear. Now it's a matter of figuring out how to best use it.

94. Going along with how to use this platform, I'm thankful for the chance at having one because of who it can bring me to. I've always said my dream job would be "professional friend." If I can be a source of strength or motivation for others that's great. More than that, I hope I can be a voice of comfort and safety to those who hear me. Half of friendship is helping someone feel less alone. Maybe if people can relate to my cancer journey, to drowning in stress and emotions, or to not being able to recognize their reflection, they'll feel a little bit of hope. Sometimes strength comes from knowing even one person out there gets it. Having the chance to share can only increase my opportunities to be a friend.

95. And to piggy back on being a friend- I also have the pleasure of helping more people now. I've had lows in my life before but for the most part I had it pretty damn great. I was a good student, accomplished athlete, had loving family, no financial stress, and plenty of friends. When trouble came to someone's life, I'm guessing I wasn't at the top of the list of who to refer to. If I was, it was probably based on my reliability as a friend or a source of distraction. That kept me from a whole population of people needing support. Baking someone a cake doesn't always fix things (*Jewel cakes are debatable). My heart breaks when I get a text saying "my friend was just diagnosed with cancer" because I have an idea of what's in store but I LOVE when the next text asks if they can give my number out or for advice on how to help them. It's funny to me how people ask this timidly. PLEASE GIVE THEM MY NUMBER!! PLEASE ASK FOR WAYS TO HELP! You're doing a disservice to your friend by not offering a resource to them. Cancer survivors I meet are little branches of support I cling to. What was the point of fighting if I can't use it to help other patients or caregivers. Cancer becomes a gift when I support others. I've racked my pea brain ways I could directly work to cure cancer and I'm smart enough to know that I'm not smart enough to do that. I'm not laboratory material but I am friend material. Cancer peeps are my peeps. I'm in the club for life and happy to contribute anyway I'm able.


96. A different tune. Music is universal medicine. Sick or not it can work wonders in listeners. Since I am without any musical talent, I never experienced music on the level that some are able to. I've always enjoyed but I've never NEEDED it. When radiation beams burned away at my skin every day for 7 weeks, the Grateful Dead kept me calm. When we were all uncomfortable during my first chemo, Sugar Ray filled awkward pauses. When even the Kardashian's drama couldn't pull me away from my pain, Coldplay helped me disappear. And when it was time to celebrate, we had "Shoop" on repeat. Sometimes it's like air and sometimes it's just something to shake your butt to. Troubles slip away when Taylor reminds me to "Shake it Off" and dance along. The world was silenced when Laken and Stacy sang for me in their home and I almost felt embarrassed that I could never offer a gift as lovely as their harmonizing. Music is one of the mean things that have new meaning.  Suffering gave me a deep appreciation for it. Part of this victory belongs to you, R Kelly!


97. Freedom. When you plow through hell for a year, not too many people are gonna say "no" when you decide to disappear to Central America for the summer and then move to California. There might be some confusion around it, but not many objections. Maybe it was unnecessary and I'm not sure I "deserved"it, but no one interfered with my desire for a tropical vacation. We shouldn't need excuses to go on trips, but cancer gave me one. I had an excuse to be free from all the normal obligations of life. It let me spend a couple weekends in Orange County during treatment and a week in Florida right before surgery. I totally took advantage of the excuse to be free. 

98. Happy returns. The partner to the excuse for new life is the excuse to visit the old. I'm really happy out in California. I feel a strong sense of purpose and thoroughly enjoy my surroundings. It would be easy to stay out there and keep moving in a new direction. But even when you're cancer free, you're not free from cancer. I will always have scans and appointments in my future. My medical team happened to consist of a bunch of all-stars that I never plan on leaving. So even though I love my sunny skies and ocean, I'm thankful to be forever tied to Chicagoland. I like knowing that no matter where life takes me I always have one place as a constant. Luckily for me, it happens to be home to the greatest people I've ever had the pleasure of knowing. I'll keep coming back to you guys for as long as you'll let me.

99. New people. People are always coming and going from our lives. Opportunities to make friends and lose friends happen every day. I don't believe in soul mates and I don't think any of us are destined to be with another. I might have done some relationship revamping on my own. Lovely people joined my life before cancer and would have continued to without it. That being said, I'm not sure that I would have had the privilege of sneaking onto the Skinner family's radar. I don't know that I would have spent a week in Nicaragua and met my favorite Caitie who introduced me to roommates that I see lifelong friendships with. I can't say that broken relationships would have not only healed but blossomed if I had not gotten sick. I don't believe that a kind stranger would have sent me a fb message about how nice my smile was if a mutual friend hadn't blasted my face all over their page... And that stranger would have never become the owner of a face I've grown to love... And that face would have never introduced me to one of his best friends... And that best friend would have never made his girlfriend tag along... And that girlfriend would never have become one of my best friends... See why I wouldn't switch paths? Given the option I wouldn't choose life as a cancer patient but I definitely would never change it. Some people can make anything seem worth your while.


100. I'm thankful cancer happened because it provided me with opportunities to grow and better myself and it gave me a fresh start with life. The world is more beautiful and everyone is precious. Second chances are a luxury. I have a better understanding of what I almost lost and I'm not going to waste the gift.