Monday May 9th, 2011 marked an important day that we've been anticipating on Bleeker Street for a long time. I am officially 5 years cancer free! Five years is the mark at which I'm considered "cured" from the spector called Synovial Sarcoma. It's hard to even believe that it's been that long. Everything still stands so vivid in my mind from when we started this crazy journey-- before we knew if our 'Once Upon a Time' would end in triumph or tragedy.
Five years ago-- I woke up at 4:30 am and nursed my three month old Brandon baby one last time before heading off to Loyola to have an early morning surgery. Neurosurgeon Dr. Shea saw me less than week earlier and diagnosed me with a benign nerve tumor called a schwannoma. He was the sixth doctor I'd seen for the swelling behind my right knee and the first to take me seriously. I checked in, went through a few more pre-surgical tests, pumped again, said bye to Joe and was wheeled into the surgical theater. I remember it pretty clearly- the room was very bright and green, between seven and ten masked figures milled around the room. My doctor came to talk to me before the anesthesiologist put me under and explained that they might have to cut out part of my nerve to remove the tumor. I just nodded. Counting back from ten I was out.
Five years ago-- I woke up after surgery into a full recovery room. The pain in my leg was surprising but the nausea was even more overwhelming. There was a man across the room from me was having problems coming out of anesthesia and most of the staff was around his bed. They gave me another dose of morphine and wheeled me into my hospital room where Joe was waiting. After several doses of antinausea medication and a few popsicles that the nurse did not want to give me ("those are for the laboring mothers down the hall") I started to feel better. One more pumping session (and dumping this time) Dr. Shea came in and told us that it was a, "beautiful schwannoma" and he was "99.9% sure that it is benign."
Five years ago-- Joe drove me home with the seat leaned back all the way so I could extend my leg. I'd been warned that if I stood up the stitches could burst and because the incision was so large it would open the majority of the back of my leg. I couldn't walk for a week, I couldn't sit upright for long periods of time for another two but we didn't care because as we pulled out of that garage structure we were so releaved. For the first time in almost two years we had a diagnosis and it was a good one.
We call this my "shark bite" picture
Five years ago-- Dr. Shea called me personally at home. He told me that the tumor had not been a schwanomma but it was "something else." They had to send it away to be analyzed further. I don't know how warning bells didn't go off but they didn't.Five years ago- My sister Elizabeth drove me to Dr. Shea's office for a check up and he was somber. I'd brought Brandon with me so he wouldn't have to take another bottle (he HATED bottle feeding) and that seemed to make Dr. Shea even more quite. He checked me out and showed me some pictures of the tumor he'd removed. Then as he was leaving I remembered to ask- "Did you ever find out what that tumor was?" He paused and said very quickly, "It's monophasic synovial sarcoma. I will email you the diagnosis as well as the name of the 'tumor doctor' I've been speaking with."
Five years ago-- I realized he'd just told me I had cancer.
email from dr:
Emily Bleeker #1748141
FINAL DIAGNOSIS
NERVE SHEATH OF RIGHT LOWER EXTREMITY; REMOVAL:
-MONOPHASIC (SPINDLE) SYNOVIAL SARCOMA, 4.0 CM
COMMENT
The tumor is composed mostly of herringbone fascicles of spindle cells,
although some focal areas have a plumper 'epithelioid' appearance. The
'epithelioid' areas also show increased mitotic activity of at least 4 mitoses
per ten high power fields (40X). No true epithelial areas are identified. The tumor is positive for CD99 and bcl-2. It is negative for S-100, SMA, EMA, cytokeratin CAM 5.2 and AE1/AE3 (pankeratin). This case was reviewed by Dr. Hammadeh.
NERVE SHEATH OF RIGHT LOWER EXTREMITY; REMOVAL:
-MONOPHASIC (SPINDLE) SYNOVIAL SARCOMA, 4.0 CM
COMMENT
The tumor is composed mostly of herringbone fascicles of spindle cells,
although some focal areas have a plumper 'epithelioid' appearance. The
'epithelioid' areas also show increased mitotic activity of at least 4 mitoses
per ten high power fields (40X). No true epithelial areas are identified. The tumor is positive for CD99 and bcl-2. It is negative for S-100, SMA, EMA, cytokeratin CAM 5.2 and AE1/AE3 (pankeratin). This case was reviewed by Dr. Hammadeh.
Primary Pathologist: Henry G. Brown, M.D., Ph.D.
Five years ago- I went home and called Joe and told him the news. I googled monophasic synovial sarcoma. I nursed my baby and cried as it sunk in that I had just been diagnosed with a rare, aggressive form of soft tissue sarcoma. I prayed that they were wrong. I prayed that it would be taken away from me. I learned what "bargaining" meant.
Me and 3 month old Brandon after surgery
Five years ago-- I couldn't find any survival stories. They were all stories that ended with "So and so lost their three year battle with synovial sarcoma last year....." Survival rates were as dismal as 50% in 3 years and 30% in 5.
Five years ago-- I sat on my couch with all the windows open, staring at the statistics and stories and tried to figure out how old my kids would be in three and five years. If I became a part of those statistics would they even be old enough to remember me? Would I be a shadowy memory, a culmination of stories from family members, random pictures and videos? I started journals for my kids just in case so they would know how much I adored them. I made it clear that if the worst happened I wanted Joe to find someone else, someone that would love them like a mother, someone they could call mom. And though I "knew" that we are an eternal family in that moment I just didn't feel like it was enough. I wanted to help them learn and grow. I wanted them to know me. I wanted to BE there.
Johnny 20 mo, Brandon 5 mo
Five years ago-- I didn't know if I could have any more children. I asked Joe to put away the little newborn 'going home' outfit that had been hanging in our closet since Brandon was born, suddenly going from being sure it'd be worn again to not knowing if treatments would leave me in premature menopause. I was given a choice: do chemo for a better prognosis or just radiation and retain the ability to have more children. I chose fertility over peace of mind.
So I could have a Thomas
and a "new baby"
Five years ago- I did eight weeks of radiation therapy- 35 sessions of radiation in total. I got my first and only tattoos. I left my babies with friends and family every morning, drove to the Sage Cancer Center at NIMC in McHenry, changed into a gown and lay in a machine that shot radiation at my leg. There was a picture of the beach that was backlit on the ceiling and a spot on the textured wall that looked like the profile of an old woman. It didn't hurt during the treatments but as the weeks went on my skin turned black, peeled and fell off. I forced myself to deal with the pain without pain meds so I could still nurse Brandon because I didn't want to lose that knowing that there was a chance I may never do it again. My radiation oncologist told me offhandedly one day that I should give up the idea of having more children cause, "why would you want your baby to grow up without a mom?"
6 wks into treatments
Five years ago-- I learned that you can find comfort and friendship from people you've never even met. After finding a support site on MySpace I met a community of people that were dealing with the same things I was. The physical experience as well as the emotional one. It was a relief to find people with the same rare kind of cancer I had. I loved to hear their stories and sometimes I hated hearing their stories. In five years I've lost several of my friends to SS. I cry every time.
Five years ago-- I lived in a world of if's. IF the scans are clear..., IF it comes back..., IF I am forced to do chemo because of metastasis...., IF we have another baby..., IF I'm there when the boys go on their mission...., IF I can dance with Johnny at his wedding...., if, if, if. As one of my Synovial Sarcoma friends once wrote- Every three months you had to be ready that if the scans came back bad that your life was going to change again.
not my scan... but you get the idea....
Five years ago-- I was filled with regret. Regret for the five years I waited to have kids, the time I spent working while Johnny was a baby, for not getting my lump checked sooner, for not pushing the doctors harder, for being so naive to think that it couldn't happen to me.
Five years ago-- I was afraid I'd never see this day as a healthy 30 year old woman 100% cancer free.
Five years LATER-- I've made it to this huge milestone. I know it is not a graduation- I will still get scans once a year for the rest of my life, I still get a nervous feeling in the pit of my stomach when I drive past Dr. Shea's offices on my way to Brookfield Zoo and I am still at an increased risk for different cancers in the future due to my exposure to radiation through my treatments and CT scans. But for now, from this disease, I have been spared.
When I look at my scars I think about how superficial they are. They don't reflect the nights of worry, the pain and stress of doctors appointments, scans and treatments. They don't reflect what I learned about charity, faith, prayer and friendship. They are just patterns on my skin, irregularities in pigmentation, a topic of conversation but they represent so much more.
When I was younger I always wondered why Jesus, after he was resurrected, came back with the wounds still in his hands and feet. Why didn't he, when he had the power to heal the world, choose not to heal himself?
As I grew older I came to understand that he'd left those wounds as a testimony to his sacrifice. Not as proof of his suffering, I think, but maybe as proof of his redemption and ours. It has made me wonder if perhaps there are some wounds that are too deep and too important to ever go away completely. And when I look at it that way-- the stress, pain and frustration of the past five years seems tiny compared to all those out there that have scars we cannot see. Like the family I just heard about that lost their little girl when she ran into the street after a ball and was hit by a car or Joe's family who lost their dad to a car accident when they were all very young or my cousin that lost her little baby boy a few days after he was born or my brother in law's sister that is struggling with an incurable and debilitating disease or my friends that recently lost their three month old infant son or Joe's aunt that lost her dear husband to cancer despite having faith that could move mountains that he would be healed. You could walk past these people on the street and not even notice their scars, not know their pain.
So I choose to use my scars as a testimony to the things I've learned-- that there are no guarantees in life, that hope is a choice that you have to make every day, that charity is about being willing to receive service as much as give service, that the time that you think some might want to be alone is usually the time when they need you the most, that the memories of physical pain goes away so much faster than emotional ones. But mostly I learned that if things had turned out differently, if this story had a sad ending instead of the brilliantly happy one I've been given, that this is not the end, Joe and my kids would make it through, life would go on and we would see each other again and I would be so proud of them.
Five years is 17% of my life so far-- a tiny fraction of what I hope will be the rest of my time on earth and I give thanks every day that I am still here. I've been blessed that my physical wounds have healed- I can run, I can keep up with my kids and I can go to bed without my knee aching or hip throbbing. My emotional wounds are nearly healed or at least scarred over enough to give me peace. Now I venture to live with the whens and not worry about the if's as I enter into the rest of my life-- here on Bleeker Street.
