December 22nd, 2009

Five years. It's been five years since I laid in that hospital bed nervously watching the nurse manipulate the drip of Ryan's cell into my body. It was, in a word, ordinary. I had expected this big hurrah, but there was no surgery that day or scar left behind. I wasn't instantly healed or suddenly dead either. As the doctors describe the infusion to you, they use the word "anticlimactic" and they were right. I fell asleep holding both of my brother's hands while my parents worried from the sofa in the corner. The gory action came later and has followed long after. But the day is special and significant for what it represents. It was the start of my new life. It was my only chance of living. And that is anything but ordinary.

We spent my anniversary joyously preparing for Christmas. As we decorated our Christmas tree, I hung one ornament in particular. It says "Believe." That is what today and this season are all about. Believing in the unbelievable, in miracles, in each other, in God's grace, and in ourselves. While wrapping presents we ran out of scotch tape. As I was digging through a drawer I handed my mom what tape I had found. It's called silk tape. I used it for years to cover my broviac in the shower, bandage wounds, and occlude dressings. And on my five year transplantiversary, it felt appropriate to use the last of it wrapping presents for the people I love. It felt full circle and I relished the realization of how much my life has changed.

There hasn't been a day that's gone by that I didn't think about being in that bed five years ago. I relieve the moment quite often; the fear and the pain come rushing back, but more overwhelmingly so does the hope and strength. When I thought I was dying there was one thing I worried about more than anything. I prayed that my family would be happy and find peace after I was gone. I would picture certain events in their lives without me. I would envision those big life moments that I wanted to witness. But now, five years later, I have gotten to be a part of many of those events.

The anniversary has brought a slew of emotions. Feelings are very confusing. I got out of bed and dropped to my knees. Five years is a big mark in the transplant concerning relapse rates. The chance of Myelodysplastic Syndrome returning is significantly less likely. It's feels like a weight has been lifted from my chest, and I can breathe a little easier. There is disbelief over what's happened the past five years, shock of how time has gone so slow, yet so fast, fear that the other shoe will drop, gratitude to be alive, joy in celebrating life and family , a surreal astonishment about this being my life, pride in acknowledging everything we have overcome, and anger that we still continue to go through it. We have cried, laughed, and reminisced. My emotions are very unfinished and unresolved. But that's the thing I keep learning. Death and the prospect of it is finite. I had accepted that. The medical world revolves around a very fixed timeline. It is life or death. But the thing about living is it's so messy and unpredictable. And so are emotions, I'll constantly be analyzing and working towards peace with life as it changes. So, the question it begs me to ask is in my next five years, what kind of life do I want to live? I am grateful I get the chance to find out.

I get most of the credit for being strong and brave, but the true crusaders, my heroes, are my family. They run around and make things happen while I am sick in bed or they hold my hand and get me through another tough night. They are the ones I celebrate this anniversary. They give me life, both literally and metaphorically. The parents behind the patient, the doctors behind the desks, the friends by my side, the family members eating in the ICU foyer, the stranger who is compassionate, the warriors of prayer, and the brothers at my bedside are the selfless, strength giving, unconditional love doling, and hope providing, people that make me want to fight harder and make my days a little better.

Finally, my wish this Christmas is that someone else will get the same gift I did five years ago; a second chance at life. Please join the National Marrow Donor Program at www.cecisclimb.com. You could be the match, the miracle, someone out there is praying, hoping, and wishing for this Christmas.

Reality

It’s been over a year since my last post and I have done a lot of living. It does not feel like I am simply going through the motions anymore. I still have an overwhelming amount of appointments, pills, treatments, infusions, tests, etc. But it’s not all I do. I have a fragment of a quality of life. My life is this crazy weird mix of adventures, experiences, challenges, and doctors appointments. In the past year:

I have been in the hospital and I have gone on vacation.

I have had a blood clot in my heart and I bought my first car.

I have had surgery and I have indulged in a spa treatment.

I have been to every specialist you can imagine-neurology, radiology, oncology, hematology, gastroenterology, optometry, endocrinology, cardiology, dermatology, psychology, etc and I have attended several special music concerts!

I’ve gotten shots and taken shots.

I have worn a bone marrow transplant mask, and I have worn a masquerade mask while attending a gala.

I have planned birthday parties for thirty and attended pity parties for one.

I work hard at physical therapy and I relax while getting a massage.

I have eaten nuclear eggs and I have had a glass of wine at dinner.

I have days where my mom brings me dinner in bed, and I’ve been out on a dinner date.

My cheeks have grown to giant proportions from steroids and I went to a Giants playoff game.

I have had many fun girls nights out and I’ve had countless not so fun infections.
I have been helped by volunteers at the hospital and I spent a few weekends volunteering for one of my favorite charities; The Boot Campaign.
I have had a brain MRI and I was a bridesmaid in my brother's wedding.
I have been lectured about taking my medication on time and I have given speeches about cancer awareness.

I am doing my best enjoying the good and dealing with the bad-just like everyone else. I work hard to find a balance so that I am able to experience the enjoyable things I want to do while taking care of my body and doing the things I have to do.

Someone asked me why I hadn’t gone back to school, and they did so in a judgmental and condescending way. Usually, I clam up and I explain that I take chemotherapy, I go into my spiel about not being able to give it 100% of my energy. Sometimes I share the anecdote of throwing up in front of my entire college class on the first day of school (true story). This time, I looked them in the eye and I said, “I am enjoying my life right now. I am travelling and volunteering. I am doing things that make me happy and healing. I love school, and I will get back to it when it’s my time.” It was an empowering moment for me. I wasn’t ashamed or regretful of my reality like I have been for so long. I wasn’t looking for approval or validation to qualm my insecurities. I was comfortable in my own bruised, scarred, pale, and steroid fat skin.

My reality is swallowing over thirty pills a day, I take naps, I occasionally wear makeup, I have nausea, stomach pain, headaches, and body aches on a daily basis. The truth is that five years later- I still have more sick days than I do healthy. I do more hard things than I participate in fun events. Phoenix Children’s is on my speed dial, I am on three forms of immune suppression, I nap daily, and I have bald spots. But I have improved. No matter how small and slow the improvement has been- it feels remarkable to know I am moving in the right direction. I never would have been able to do all of the things I listed above had I not gotten better. Sometimes I look back at where I have been and I drop to my knees overcome with gratitude acknowleding how far I have come.

Like any human being, I am guilty of hiding my scars, my weaknesses, my insecurities, and my flaws. Whether it's a coping mechanism or an attempt to be positive-I post more pictures of the good things than I do the bad. I say “I am fine.” when I am not. I hide my actuality because I don’t want to be seen as just the sick girl. It has been five long years and if I posted every picture or told you what my days are really like- I am afraid you would look at me like I was foreign, treat me differently, or pity me. But I did what I felt was right at the time. And now, I am delighted to share that I am in the process of writing a book about my unconventional “climb”. It is remarkably therapeutic to be so boldly honest.  I am vulnerable and unfiltered pouring my heart on the page. Writing it is both scary and liberating. For what feels like the first time since I became ill, I have come to terms with what has happened. I am learning to accept the reality of my life while maintaining hope that it will continue to improve. I have never felt so alive.

Balance

I was done with MDS, Graft Versus Host Disease, and everything that came with it. I let go of it in my own time, my own way, and it felt good. I started applying to my dream school, Columbia University. We were looking into medical programs nearby. To me, going to Columbia was another way to say "Screw you MDS, look at me now." In my eyes, it was victory against that awful disease by achieving the dream I had long before I was sick.

Allan & I @ Phoenix Children's

Getting an infusion.

But GVHD wasn't done with me. The Rituximab stopped working and was causing too many side effects so the doctors started me on a new medication called Gleevac. My liver enzymes elevated substantially. In other words, my liver put its foot down. (Can you blame it? After all of the toxic medications and treatments that its been forced to metabolize, it's allowed to say no, I suppose.) So, that left one choice: steroids. Oh, steroids. Like the saying "With great power comes great responsibility" steroids warning label should read "With great power comes great amount of awful side effects." But they are effective and quickly got the GVHD under control. I had a few flares and it was determined I needed to start a third form of immune suppression called Methotrexate. It is an older chemotherapy drug used to treat patients with auto immune diseases. And get this...it is working. Go ahead, let those last three words sink in. IT IS WORKING. My GVHD has never been this inactive. It's incredible, marvelous, fabulous, wonderful, miraculous, hallelujah-worthy, tear inducing news. Praise God that we found a drug that I tolerate that is effective against my stubborn little cells.

Clinic Appointment

However, it comes at a cost. I am very sensitive to the medication. Typically they prescribe medication by weight, and the dose I am currently taking would be prescribed to a three month old. Yet, I experience a slew of side effects that diminish my quality of life. Thankfully, my body seems to be adapting with each passing week of the therapy. The goal is to remain on Methotrexate for as long as it takes to taper my other immune suppressions, so at the least, a year.

After focusing on living in the present it is difficult to put such high expectations on the promise of a healthy tomorrow. It is a trade off of sorts, a gamble- my quality of my life now for the hope of a much improved long term. But ultimately, that is the goal- a life without debilitating fatigue and harmful medications. So far, Methotrexate is our best option. I won't stop working towards things I am passionate about just because I don't feel well, but I have to do them at a slower pace and in my own way. It means I have to accept that taking one class a semester is still progress. It means allowing myself to take as many naps as I need and forgiving myself for not getting out of bed on days I feel poorly. I've learned to prioritize my energy. If I want to do something, I set aside time before and after to rest, and choose what I want to do most.

Touring Florida
(no, I didn't smoke it)

Gammie's 80th

I have really struggled these past six months with identity. How do you find the balance of sharing good and bad news in a way that accurately represents your life amidst adversity? Some is too personal. Some is too painful. I am good with denial. That naive optimism has served me well. Not to be mistaken for ignorance because I pride myself on being well educated about what is going on in my body. I research tirelessly and ask questions until I get some speck of an understanding. But when it comes to emotions, my coping skills lean heavily on rejecting the truth, or at least avoiding dealing with it until I am farther from it. So, maybe when you ask how I am, I'll say "Good." in an attempt to spare you the details or to save myself the agony of admitting how embarrassingly unproductive my days can be. Or if someone asks how the chemotherapy is going I will only mention how helpful it is and leave out the part that for 4 days a week, I feel awful. It is not that I am trying to put on a facade, but nobody wants to hear me complain, myself included. Dwelling on the negative isn't healthy, regardless of how much there may be in my life, but at the same time, I can't ignore it. I am trying to strike a balance between honesty and moving forward. I don't need or want to identify myself as "the girl who had the transplant." Don't get me wrong, I am proud and grateful to be a survivor, but it is not who I am, just what I am doing.

Bieber, Bianca, & Me

My Instagram timeline is a collage of happy moments, grand experiences, and pictures I am comfortable posting. A more accurate depiction of my life would include all of those grand moments but also a lot of bags of M&M's, needles, medication, and hospital rooms. I like sharing those happy moments and crazy experiences; it helps me focus on the good things I have going on, which there are a lot of. In January I went to a meet and greet with Justin Bieber thanks to my new best friends, Mia and Cy! I planned a surprise birthday party from bed for my sweet grandma. One week, I got my chemotherapy overlooking the beach in Florida, and that night I went to a Beyonce concert and danced until I couldn't stand (no, really, that was a little scary, I shouldn't have danced that much.) I love going out to dinner with Chelsea and Johnny boy and visiting loved ones in Kansas City. But those are privileges I work hard for.

The bottom line is that every morning I get up with the goal of doing my very best. Sometimes, that means I get dressed up, go on vacation, or attend a concert. I always stop and think to myself "this is the kind of moment I fought so hard to get to." But most days, it is still just a me in a pair of pajamas, in bed remembering how far I have come and fighting so I can experience another one of those grand moments.