CHRISTY. STAGE 3 CORECTAL CANCER. DIAGNOSED AT 38. MAINE.

CHRISTY. STAGE 3 CORECTAL CANCER. DIAGNOSED AT 38. MAINE.

On January 18th, 2008 I went to the emergency room experiencing severe pain in my right side and the overwhelming urge to move my bowels, but I could not. I had recently seen a gynecologist (who was my only doctor at the time) and with whom I had only recently scheduled an appointment. I remember writing on my intake form that I thought something was up with my gut. Frankly I thought I had a fibroid tumor.

I come from a long line of working poor people with “iron constitutions” who never saw doctors unless they were having babies or maybe bleeding about the jugular. As a child I vividly remember waking up one morning to find a bloody tooth on the bathroom sink sitting next to a pair of pliers. My father had literally yanked a tooth from his own head after suffering with a toothache for a week. I never knew teeth had roots!  My mother’s signature remedy to any childhood injury was a wet paper towel and maybe some mecuricome… remember that stuff?

Anyway…I had made an appointment with a gynecologist as I had been experiencing very heavy periods for about 6 months prior, my belly was distended and I was experiencing back pain daily, which I noticed mostly when driving for some reason. I had put off making an appointment because I was a self employed personal trainer and lifestyle/weight management coach. To say I was healthy and strong at the time would have been an understatement. But I didn’t have insurance.

Fast-forward, I have now been married for six months, I have insurance, so off to the doctor I go. She examines me form head to toe, no hernia, no fibroid, no hemorrhoids, fecal occult test comes back negative… blood work looks great except my vitamin D level is the lowest she’s ever seen. So she decides that perhaps I have simply developed some food sensitivities and my tummy is all riled up. So she puts me on a “rotation diet” and sends me home. After about a week of eating all kinds of different foods I am not terribly alarmed when I am suddenly doubled over with what I believe to be severe constipation. I of course called her office but it was a Friday afternoon so she could not see me. She advises me to go to the ER to make sure it’s not my appendix, and we plan to see each soon.

So, I’m in the ER, I get my first IV ever…it takes three nurses and seven tries to get it in. They take some blood and again my blood work comes back normal, I have a CT scan…yup I’m extremely constipated; they give me a jumbo pack of Miralax and send me on my way. The phone rings the next morning at 9am. It’s Saturday mind you. It’s a very nice man on the other end who identifies himself as Dr. Strauss and proceeds to tell me that he reviewed my CT scan and would like me to see a buddy of his…on Wednesday…. for a colonoscopy.

And I know that I am in trouble.

Wednesday comes, my best friend Kim takes me to my appointment, and I’m all excited to watch the procedure. Which I do until… there it is.  They find a large tumor on the crux of my colon and rectum. I hear the doctor say “put her out”. When I wake up, all of the nurses, with whom I immediately bonded while being prepped, were around my bed. I could tell that the news was not good. One of them had just finished her shift and had her coat on and purse in her hand. She waited to leave until I woke up. She gave me a hug and was clearly so upset that she forgot her purse. They found it on my bed near my feet and another nurse went running after her. By now they allowed my friend Kim to come and be with me when the doctor came to speak to me. He of course could not tell me in that moment what I’m sure he already new. He just got really close and quite and held my hand and said “I know you can do this”.  My friend brought me back to her house.  Her husband made me scrambled eggs with pesto and I went to sleep.

The following Wednesday I received a call from the Dr. while I was at work. I stepped into the back stairway and heard the words. “Christy, you have cancer. It is one of the most common kinds of colon cancer. It is treatable. You are young and strong and I believe you can beat this.” I can honestly say I did not feel shocked or scared. I just knew from that moment on my life was going to be very different. I came back out to the front desk at my gym where I worked and delivered the news to my boss and co-workers. I never ever once felt emotional. They all still remark that they could not believe I was not sobbing or freaking out.

What I actually felt in the moment in all honesty was relief.  (This is where this story could turn into a novel. But for now I will try to stick to the facts). I knew what my cancer was for me. I knew why an illness had manifested in my belly and I felt not only relieved, I felt down right off the hook. Someone was going to cut me open and reach in and take out generations of pain that I held like a growing child in my body. I did not know or care whether I would live or die. I just knew in that moment my healing had begun.

I left work and called my gynecologist while driving home. I remember pulling into a bank parking lot to talk to her. The sun was shining. I asked her to be brutally honest with me about what would be happening next and she was. I then called my husband who had been away this entire time for work. His company immediately put him on a plane to come home to me.

Within a week I now had three doctors…my gyno, an oncologist and a surgeon too. They asked me who my PCP was and I didn’t know what that meant. I said, “you’re talking to a girl who’s never even had a cavity and got perfect attendance every year in school until high school.”

A few days later I had a colonoscopy to grade my tumor. Stage 3 NI. I remember that doctor telling me “I’ve seen people beat this.” I can tell you I did not feel encouraged by his words, at all. I met with my surgeon. Her name was Sarah and we immediately clicked. She told me everything that would be happening. She said cancer is not what typically kills patients. Treatment does. She said my age and physical fitness were on my side. She explained all about radiation and chemo and an ileostomy. I said, “Can I still drink wine?” She laughed and said yes. I said. “Good, then I will be just fine.”

I refused to go on-line and read anything about colon cancer. I just decided my experience was going to be my experience. I was not like anybody else. I was not a statistic. I can honestly say I had no idea what an ileostomy was until the night before my surgery in May. I figured I ought to at least prepare myself for that I would find when I woke up.

My next trick was to have my medi-port installed.

Whelp, I should have bought a lottery ticket that day, because I was the one in a million to get an infection when the put my port in. Everything went smoothly. I went right back to work for a couple of days. It was now the weekend. My husband was away again. One of my co-workers had gone home with the flu the day before, so when I started to feel hot and then freezing and faint, I figured I must have the flu too. I called my Gyno. who was now my PCP as well. I told her I was shaking violently but didn’t have a fever. She was like, get some arnica.

I went to bed and was in severe pain in my right shoulder blade area. I was sooo thirsty and my heart was racing all weekend. I had never had the flu either so I just figured this is what the flu is like. I got up to go to work on Monday morning. I felt so very sick. I still have no idea how I managed to do it, but I had clients scheduled all day and wanted to be there for them. I managed to rally and make it through the day. I had no clients scheduled for the next day and knew I could rest then. When I woke up on Tuesday morning my left side of my neck looked like it had a football in it. I was pretty sure at that moment I didn’t have the flu. My baby brother happened to call that morning. I remember telling him I thought I should call my doc. He said I should. I took a shower and called and she said go to the ER. I called my hubbs who was home now and told him I was driving myself to the ER. Could he meet me there in about an hour? We arrived and I was immediately taken in. My husband came into the exam room with me and then I was taken by wheelchair to have chest x-rays done. I could barely stand long enough to get the images taken. I felt like I would pass out. They put me back in a wheelchair and parked me in the hall behind another patient. We didn’t say a word. Just sat there waiting. I wanted to yell for my husband as I knew he was in a room right around the corner. Looking back, knowing now that I was very near death and easily could have died that weekend in my bed all alone while my husband was away, or right there and then, sitting silently behind another person “in line” makes me feel very sad.

Turns out my lungs and jugular vein were filled with blood clots. I was immediately rushed into surgery to have my port removed. I had some sort of crazy infection and the CDC was now handling my case. My fever had been so high my lips had blistered and were covered with black scabs. For two days they could not figure out what was going on or how to treat me. They told my husband not to leave the hospital but that he should makes some calls and try to “get my affairs in order.” I was quarantined and lots of people in white coats were in and out. It was a resident who took the time to really look me over. She pulled my johhny down and discovered a rash making its way across my chest. She took her pen out of her white coat pocket right there and then and drew a line around the edges of my rash. I was diagnosed with a Group G Strep infection. Apparently this sort of infection can kill you within three days if not treated. It attacks your heart valve. They were able to find that this infection could be treated with good old penicillin. The hope was that it was not too late. The next morning a very nice young resident came to collect me. He helped load me into a wheelchair. He wheeled me down the hall a bit and then we pulled over. He knelt down next to me chair and explained that I would be having an esophageal ultrasound to determine whether the infection had indeed made its way to my heart. And if it had I most likely would not survive. He seemed very nervous. He was adorable and boyish and had a very thick Indian accent. In that moment all I could think was, this poor kid! It’s probably his first day on the job, so to speak. Ten minutes ago he was probably in a room with other doctors getting a pep talk. I could imagine them punching him in the shoulder and saying “Get out there kid; you can do this” like you’d see on some episode of ER.

I was wheeled into a very small room. There was classical music playing. The doctor explained what would happen next. He had to insert a long hard wand like object deep into my throat. I asked him to be particularly careful because I was an opera singer. Suddenly I felt like he saw me. He pulled up a chair next to my bed and we had a lovely and long conversation about classical music. I think somehow in that moment I became human and not just another job of the day. He spoke sweetly to me and I realized that he didn’t think being careful with my throat would really matter one way or the other. I truly believe he thought he would just be confirming that it was too late. I could see it in his eyes. At that moment, and in many situations after that, something inside me just did not believe I wouldn’t make it. I just remember hearing myself say, “Just wait and see. Just wait and see.”

Obviously, it wasn’t too late. I was prescribed heavy does of penicillin that needed to be administered religiously every four hours or the infection could flare up again. Whelp, when you’re in the hospital and waiting for your meds and the pharmacy is busy you’re basically screwed. It was Sunday and I was overdue for my meds. I politely asked my nurse to get the doctor from the CDC on the phone and let him know that I was overdue for my meds and could he please see what he could do.  Soon I had my meds and soon after that the doctor himself showed up to see me. He told me at first he was furious with me because he was in church when he was paged. He came to see me to tell me that he was so glad that I did because it saved my life.

The very next day I had a picc line put in so my meds would be administered like clockwork. A wash of penicillin would course through my veins and every four hours for the next six weeks in concert with horse-like doses of blood thinners. Meanwhile my actual cancer treatments had to begin. I stayed in the hospital for a couple of weeks and would be wheeled down to receive my daily radiation treatments and I was put on an oral chemo therapy. Once I got out of the clink I was able to drive myself daily to radiation. So for six weeks I dragged around a pump of penicillin that went strait into my central artery, took six big chemo pills and had my butt naked daily with massive does of radiation. It’s pretty bad when you’re lying face down on a table with nothing but your behind exposed and the docs come in and recognize you by your butt and say “Hi Christy!  How ya doing today”?!

After the initial six weeks of preparatory treatment, I was given a six week break before the surgery to have my tumor removed. After a week or so I was feeling well enough to go back to work part time.

 

This is when it got really heavy.

My first day back to work at my gym I was engulfed in love. There are hundreds of members at this gym and I’m pretty sure I got a hug from every single one of them. I was also informed that they had all been hard at work organizing a benefit for me to help with my expenses since I would be unable to work for a long time.

I was absolutely overwhelmed. I told them that I could not accept such a gesture. One of my former clients, who happened to be a psychologist came to me and said, “Christy, you must allow people to do this for you. You need to understand that it is a gift that you are giving to them. It makes them feel like they can be of help in a helpless situation. This will give them comfort.” I agreed. That night I had a vision of sorts. I pictured everyone in the gym in a huge circle. Everyone was holding hands. Everyone was connected. I then imagined if I let go of the hands that held mine and stepped away I would be denying not only myself and the two others whose hands I held, but I would be breaking the bond, the connection of healing energy and everyone would lose. I would be denying the love of the person on my one side and depriving the person on my other. I knew I had to learn to allow and to receive. I knew in that moment that this was what my cancer was here to teach me.

The benefit was a huge success and I forever indebted.  They also created a “sunshine basket” for me. Each day people could bring in cards or little gifts that my mother would bring home to me every so often. I still have every single one of them. Also, one of my clients Teena made little heart pins for everyone to wear, which many people did, every single day, pinned to their gym clothes until I returned to work over a year later.

I went on to have surgery in May to have my tumor removed. I did lots of meditating and visualized my perfect outcome. I woke up to hear my doctor say we had a text book outcome and she was thrilled with my result. I spent the next week in the hospital, healing and learning how to care for my ostomy.

Remember my little blood clot incident? Well, I had been on blood thinners still all of this time, which of course I had been taken off just prior to my surgery. The day I was sent home I was given blood thinning shots that my husband was to administer for a week and then I would resume my normal dosage of blood thinners again. The afternoon I arrived home my husband gave me my first shot. We still have a good laugh about it because he was so nervous he basically tried to harpoon my leg and the shot bounced off. He did manage to get tough on the second try and got it in. Within an hour or so I was extremely thirsty and felt very woozy. Par for the course I thought, and soon went to bed. I started to feel pain in my belly and kept trying to pee. And I was sooo thirsty and felt very weak. Finally at 4 am I woke my husband up and said ‘I’m sorry baby but I think I need to call the doctor.”  He got up and turned on the light. I tried to sit up to talk to him and lost consciousness. I can still see his face as he screamed my name just before I passed out. The next thing I knew I was being strapped to a board and loaded into an ambulance. They told my husband to follow us in his car. We live an hour from the hospital. I was in so much pain I felt every single bump in the road as a kick in the stomach. I could see out the back window. I could see my husbands face as he drove. I wished so much I could talk to him. I knew he was terrified. We arrived at the ER as the sun was coming up. I was taken immediately in. They cut my pajama bottoms off. I was so sad. My friend Julie had given them to me a few weeks prior. They had hearts on them. A very unpleasant young doctor started pressing hard on my belly. I just remember screaming out in pain. He scolded me and told me not to yell. That it would only make it worse.  If I had had the strength I would have punched that son of a bitch right in the face. He then proceeded to jam a catheter into my body and abruptly left.

Then all of a sudden everything was very quiet. A nurse came in and just began circling my bed, methodically unwrapping things. She put in a huge IV and said I would be receiving a blood transfusion. She told me I was internally bleeding and she was prepping me for surgery.  She then asked my husband to come over to my bedside. She handed him a bowl and asked him to hold it under my chin in case I vomited. She then proceeded to tell me that she had to insert a large plastic tube up my nose and feed it down the back of my throat into my stomach. This was normally done when people were unconscious. She told me to relax and swallow when she told me to. The tube kept poking into my mouth from my sinuses. After about the fourth try I stared to cry with exhaustion and asked if we could please take a break. We all actually started to laugh. We finally were able to get it in and I was off to surgery.

I vividly remember waking up in the operating room when we must have just finished. My surgeon was furious. I remember her pulling of her cap and saying “Congratulations, you just gave birth to a basketball full of blood.”

Seven units of blood had filled my belly.

The number seven it turns out has huge significance for me, and it was crazily coincidental that my surgeon alluded to having given birth to seven.

I’ve now been cut open twice in two weeks. I spent the next week in intensive care. I was in so much pain I remember the first time my little Mummy came to see me. I wanted to touch her and let her touch me but all I could say was. “I’m sorry mummy, please don’t come near me.” I was so afraid the bed would get bonked or sheets might move. And I would die from the pain.

They had me up and out of the bed the next day of course. I remember after a few days I could take a few steps. My brother Joe came to see me. He walked with me down the hall. We discovered there was a tiny infant in the room next to mine. He was strapped naked to the bed. He was sprawled out and looked like a little frog like in biology class, pinned open and prepared for dissection. But then I immediately saw one of the most beautiful things. His parents or someone had the sense enough to make a big poster and hang it on the foot of his bed.  In big blue letters it said. “Hi! My name is Sam, and I love the saxophone.” (I get choked up just sharing this).  Someone had sense enough to know that everyone who laid eyes on this poor baby would be overwhelmed with sadness and that would be the energy directed toward his struggling little body. But when we read that sign it filled out hearts up to the tippy top with joy and hope which streamed through each of us and out toward him.  Magical.  I can only imagine little Sam is rockin’ out to some sweet jazz somewhere right now.

So, within a few days I’m on the mend. My catheter has been taken out. I limp into the first shower I’ve taken in weeks.  A few more days and I’m feeling pretty good except I’m having difficulty peeing, and there is blood coming from somewhere and soaking my bed pad. I’m asked if I think I might be having my period. I say I don’t think so. I stopped having my period due to my radiation and chemo treatments.  They seemed to blow it off.  They tell me I have a UTI, give me more meds, and say I should be good to go home in a couple of days.  A couple of days pass. I still feel like I need to pee but barely can.  My surgeon happened to be off that weekend and I was supposed to be sent home. Another doctor barely set foot in my room. Looked at me and said you look like you’re doing fine. I’m sending you home. I said I didn’t feel quite right and I wasn’t sure I felt comfortable with that. I wished we could wait until my surgeon got back and we could make the decision with her. Nope. Home I went. I wasn’t home a day…my fever spiked and I happened to spring a leak with my ostomy. I was all alone but my visiting nurse was scheduled to visit me later that day. I just knew I couldn’t wait. I called her and she begrudging came as soon as she could. She took one look at me and said, “You’re going back to the ER, right now.” We got in touch with my husband. He sped home and back to the clink I went. I was taken in for examination. I asked the nurse who was checking me out if Doctor So-and-So was there that night. She said yes he is. I said, call him and tell him I said to fuck off.  Remind him I told him I didn’t feel right. I don’t know if that message was ever relayed.

It turns out I had developed a huge abscess in my pelvis which burst. The blood that had been appearing on my bed pad was indeed pouring out of my vagina. It was however not my period at all. A fistula had bust through my vaginal wall and it was the bloody puss of infection pouring out of my pelvis via my vagina. Lovely.

So, I had a J.P drain installed into my pelvic bowl through my right buttock…twice, without anesthesia.

Once they finally got it in right, it worked like a charm. I filled that little pouch up 5 times a day for the next nine months it had to stay in there.  (Little more symbolism with here with nine months…but I digress.)

Meanwhile my eleven inch incision had become infected so off to have that opened up I went. Turns out my surgeon was off again, so lucky me, I got to see Dr. Jerk Face. He took one look and said, ‘Yup. That needs to be opened up so we can let it heal from the inside out.” He then proceeds to tell me that he could give me a shot to numb the site but that would hurt just as much as him just cutting it open. I said whatever. Just do it. Out came some huge scissors. He plunged them into my belly. Fluid squirted high out of my body as he proceeded to cut the skin of my belly like he was cutting wrapping paper for a present. It sounded like he was cutting shoe leather and the pain burned. Man, did that burn.

So home I go and my visiting nurse meets us there so she can teach me how to clean this enormous gash in my body and so she can measure me to be out fitted with a wound vac.

She has me lie flat in my bed. She pulls what seemed like feet of gauze from my body and then says, okay. I need you to look at your stomach. My husband was standing at the foot of the bed, paying close attention to the instructions.  She helped me sit up a teensy bit so I could see my tummy. It was the first time I actually came undone. I looked at my belly and then looked up to see the horror on my husbands face, and I lost it. There was a gash in my body eleven inches long and two inches deep and gaping, right down to the filmy shiny fascia. I do not know what kept my guts from spilling out.  I said I just need a minute. In that moment I felt so sorry. I felt so responsible for my illness and so sorry for my body, so sorry that it had to come to this. I knew in so many ways I (my mind) had done this to myself, my body. But I didn’t know any better. I held on and held in and rationalized and diminished so much pain, so much shit for so long my poor body just gave out. (Again I digress). But in that moment, I was completely overwhelmed and filled with the most intense maternal and loving feelings for my body and for myself. I asked my body for forgiveness in that moment and I promised to take loving care of it. I felt as if I had just given birth. It was an out of body experience. I was looking down at myself with the eyes of a mother seeing her child for the first time. I was so overwhelmed with love I knew my body had no choice but to be healed.

The next day a new nurse came to outfit me for my wound vac. It was July now. Mind you, I’m still just trying to recover from my initial surgery which took place in May. It’s hot and it takes three very painful tries to get my tummy plastic-ed off just right to get a proper seal. It was extremely difficult too because my ostomy site was so close to my incision. By the time my nurse left two hours later I was absolutely exhausted. My husband came in from outside and said, “Okay Baby, time to get dressed.” We had been invited to a wedding that day two hours from where we lived. I said, “I’m sorry honey but I just can’t do it. I just can’t.” He looked at me, and without a single hint of sympathy and said “Get up. You still have like a year of this shit to go; if you throw in the towel now, you’re dead.”  I knew he was right so I said, “You’ll have to help me in the bathroom…hold my wound vac and my drink while I fumble with all my tubes and clothes and everything.” He said, “Get your ass dressed.  We’re leaving in an hour.”  I then told him one day I was gonna write a book and it would be called CIRCUS UNDER MY SKIRT! We laughed, hard. And we went to the wedding. And he helped me in the bathroom at least ten times. And I carried around my wound vac and a clear tube hung out of the bottom of my skirt, sucking blood and puss from my belly and tugged at my cells on an atomic level making them divide and multiply at a much faster rate. And I drank wine and I felt human again.

And from that moment on things started to look up.

For the next eight weeks or so my nurse Ann, with whom I’m still very close, came every other day to help change my dressings and ostomy pouch.  I’d have to stop eating at 6 pm the night before so by the time she came in the morning the contents of my stomach would have emptied and we could change my pouch without incident. Ostomies have a mind of their own, you see, and provide no warning. I named mine Stomie and made up a little song about it. I would have to get up every two hours or so in the night to empty my pouch. I didn’t mind and likened it to a mother getting up to feed her baby throughout the night. I still had the J.P drain hanging off my right butt cheek too, which I had to “bleed” so it wouldn’t get clogged. I had to measure every ounce of every liquid that left my body for months. But most of all I had to face my shit, everyday, as it poured out of a hole in my belly.

After having the J.P drain in for a few weeks I stared having CT scans to see how the abscess in my pelvis was doing. I needed to start my last round of chemo and my doctors didn’t want to do that until the tube came out. After a few weeks and easily six CT scans my doctors could not understand why my pelvis would not stop draining. My surgeon sat me down and said she was scheduling me for a procedure to determine whether I had a leak in my intestines which was producing all of the fluid. She told me she suspected that was the case, and if so, I would not be able to have my ostomy reversed.  Again, I just remember thinking. “Just wait and see. Just wait and see.” I knew in my heart she was wrong. I knew my pelvis was weeping and I knew it had good reason. And I didn’t care if I had the tube in for the next five years if that’s what it took.

Indeed, she was wrong. I was able to watch the procedure and was able to hear her shriek with delight that she was mistaken.  My pelvis was still draining away. The tube would have to stay in for five more months while I endured my last round of chemo. I couldn’t have cared less; whatever it took.

 

I had chemo every other Monday for the next five months. I had to have it directly into my veins since my mediport didn’t work out. That I don’t mind telling you, was nothing less than excruciating…and nauseating and paralyzing. The type of chemo I had would literally paralyze my hands for days. I couldn’t eat or drink anything less than warm or my jaw would lock and my throat would close up. I’d have to wear mittens to reach into the refrigerator. Sitting through the infusions would take at least two hours. Drip… drip. My arm would feel like I had severe frost bite. My hands would be paralyzed. And all the liquid from the chemo bag and anti nausea meds would fill my ostomy pouch completely up. Try opening your ostomy pouch to empty it when your hands are paralyzed and you feel like you’ve just been hit by a truck while you’re at it.

But I did it. It was my mom who would take me to my chemo sessions on her only day off from work; a mother’s love.

It’s now February. Chemo is done, and I have had the J.P. drain pulled from my body.  I think Sarah, my surgeon, was happier to rip that thing out than I was! We giggled with joy. She said I do not know for the life of me how you managed to stand having that in all that time.  (I forgot to mention that she actually had me evaluated a few months before because she was sure I was in denial and thought for sure I would crack soon). Nope. I really was okay with it all. I don’t want to say I deserved it, but I was willing to see it through. My body deserved my total attention and care. I had ignored it for a very long time, and it wasn’t going to let me off easy.

Next up was the last step. Having my ostomy reversed. All along I had been told that we should remain “optimistically hopeful” that my parts could be reunited. Sarah told me she would not know until she got in there. Again I chose to wait and see. Throughout my recovery I had pushed myself physically each day to do more and more. Walk around the kitchen, walk to the porch, then to the shed, then to the mailbox. The more I resumed my ability to do normal things I would just try to remember what it felt like to do it without my ostomy. I would literally go there in my mind and body and try to recreate the exact feelings of being “whole” again. But I would also try to figure out how I might do certain things if I had to have my ostomy forever.

On February 11th, 2009 I had my ileostomy successfully reversed. I visualized exactly what my surgeon would say when I woke up and I swear to God, she said exactly that.

She slid her arms under my covers to touch me and bent down to me and said. “You did great. Everything went perfectly”.

The week that followed was the most physically painful and ugly and heart wrenching and beautiful week of my life.

Day two of post surgery recovery I get a new room mate. Her name is Mary and she is blonde and thin and pretty and my age and she is having a portion of her colon removed due to cancer but has been told she won’t have to have an ileostomy. They can just reattach her right away. She’ll undergo some chemo and she’ll be fine. She has a ton of visitors, friends and family all squeezed behind the curtain on her side, in and out all day and night, there to support her. My husband chats a lot with her husband about what loving a sick girl is like and he tells him it’s all totally worth it. That she’s on her way. I talk with Mary about my experience and I too assure her that she can do it and it will be over before she knows it. Mary gets wheeled off for her surgery, which was supposed to take six hours. She’s back beside me in less than four. It’s completely quiet. Her crowd is still coming and going but silently like little geishas in the night and all I can hear are whispers and muffled crying. My husband sees her husband in the hall and learns that the surgeons opened Mary up to find that her belly full of cancer. So they just sewed her back up and told her she had only months to live. She left the hospital the next day and I have no idea whatever happened to Mary.

Talk about survivor’s guilt.

The events of my next few days would prove to be a distraction, however.

I had been given the green light to be able to eat. So I did, like three meals, and still no action. By now I am full of gas and poop and am in excruciating pain. I am doing laps in the halls like it’s my job and being sent for x-rays daily to see what’s happening in there. My surgeon tells me if my intestines were going to burst they would have by now, and decides to take drastic action. She says because of all the radiation I had my tissue is like cement and my colon is shrunken and can’t seem to stretch to let anything pass so they would have to stretch it for me. I can honestly say this was the most painful part of my entire ordeal…times ten!

She began with her fingers to try to open things up until I literally cried out so loudly that an attending nurse came running in and ripped the curtain open to see what was going on. They then decided to insert a tube into my colon to not only stretch it out but to drain the contents before I literally exploded. I have never ever been in so much pain as when they inserted the tube. But it did work and my bowels began to drain. She said she would be back in an hour or so to check on me and left. I literally thought I could not bear it. An hour… I thought I would die! After what seemed like forever I called my nurse and asked him to call Sarah and see if she was coming back soon. I didn’t think I could take it much longer. He came back quickly but looked very upset. He said she was too busy and couldn’t make it back tonight, and that she wanted the tube to stay in for the next 24hours!

I knew I was going to have to literally check out of my body to endure this. I decided this must be what child birth is like. I had never given birth but knew on a primal level that I was made to endure this kind of pain, that I could, and so I would. And I did. And the tube came out and I spent the next 4 days literally camped out on the toilet with a pillow between my head and the wall. I was shivering and pooping and it burned and I was so fucking tired. I think I could accurately draw the pattern in the bathroom floor tile still to this day. Sarah would periodically knock on the door and peek in on me. Finally I was able to get back into bed. And I slept and slept. My friend Teena came to visit me. She said she stayed and just watched me sleep for two hours. I would never have even known she had been there but she left a beautiful plant for me.

The sweetest moment of the whole ordeal came in the wee hours of the morning that I was to leave the hospital for the last time. One of the nurses who had cared for me on many occasions during my many stays there on the third floor came into my room. Although I was not in her care that night she came to see me. She walked over to my bed which was adjusted high off the floor. She leaned onto my bed and began gently and lovingly stroking my hair and face and she ever so softly said… “You did it. You did it.”

I went back to work at the gym on April 6th, 2009, six weeks later with gauze still stuffed in the hole in my tummy where my ostomy had been. In May of 2013 I was declared free of disease and released form my oncologists care. I will have colonoscopies every two years for the rest of my life, but I don’t mind one bit. It means I get to see my surgeon Sarah. Whenever I see her she throws her skinny little arms around my body and reminds me that she lay awake many a night worrying about me praying to God that I would be okay. Whenever she introduces me to anyone she says, “This woman walks on water.”

All I can say is this woman knows that cancer treatment is fucking barbaric. This woman knows that doctors and nurses might be angels here on earth, but they are human beings and they make mistakes. This woman knows that all suffering in this life comes from resisting what is. This woman knew that surrendering was the only way to make it through. This woman knows that the human body has an unimaginable but absolute ability to heal. This woman knows that suffering and grace walk hand in hand. This woman knows the true meaning of compassion and forgiveness. This woman said yes to life and allowed herself to be loved and cared for. This woman has been to the edge. This woman knows that we are in this thing called life together and there just isn’t any making it alone.

This woman knows, with every fiber of her being, that love heals. It is always and the only answer.

So here I am, about to turn 45. I still have no cavities. ☺

I was declared cancer-free almost two years ago and released from my oncologist’s care.

It was completely anti climactic.  He just said “Congratulations. You did it. I don’t need to see you anymore”. He gave me hug and sent me on my way. There were no balloons, no lines of cheering people in the halls, no parade… just me, alone, walking out of the cancer center. Just me walking past others on their way in. I wanted to say, “Hey look at me! I was in your shoes a year ago. You can do this”. But it was none of my business. They were embarking on their own trip. They had been given their opportunity to transform just like I had. Maybe they would and maybe they wouldn’t.

The year that followed was a very difficult one for me, almost harder that the one before. I was still here, left prostrate in the wake, left to make sense of it all. My mind was fogged by all the chemo and I’m pretty sure I glowed in the dark from all the radiation I’d had. I was tormented. I felt so lucky and guilty and an enormous pressure to do something profound and meaningful with my life. I really struggled for a while. And then somehow I remembered. And I surrendered. And I will again and again and again. I changed jobs and have settled into my beautiful, crazy-busy, fortunate, completely imperfect life. I do not now, nor did I ever care to allow my illness to identify me. I have never participated in any cancer-related organizations nor felt the need to ally with any others who had had similar bumps in their road. I’m just a girl who went trough treatment for cancer. And it sucked!! And I moved on. I do not care for the word survivor. I mean, I survived the chicken pox too. Cancer is just one of my life’s experiences so far. And of course I think about it on a daily basis because my body is scarred and different and I fart a lot and have a special needs belly and I do a happy dance every time I poop. But I am not special because I had cancer. I am special because I am. I don’t have any more answers than I did before. Very recently I sat quietly next to my father as he drew his last breath on this earth. And all I know is that when it’s over, it’s over. Just like that. Like a little fire fly in the night, one moment my light will be on and the next it won’t. And then who knows… I’m just passing through this life with a smile on my face. I always have and I always will. I’m just gonna continue to wait and see.

I am so very grateful that Todd rode into my life and asked me to share my story. Clearly I needed to get that all out, once and for all. Thank you for taking the time to read it. Whoever you are and whatever you’re going through, I wish you Peace.

For now, I’m off to live it up, for just as long as I can.

 

Skills

Posted on

December 10, 2014

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