Life As A Cancer Survivor

I finished my last chemo treatment March 4, 2005.  For years after, my family and friends celebrated that day as my “Carpe Diem” day.  This was a celebration I learned from Lance Armstrong in one of his books, “It’s Not About The Bike.”  Armstrong wrote that he threw a party for himself once a year on his cancer anniversary to celebrate his life and others.  I silently vowed early on that if I made it I would always do the same.  I still do something special for myself every year on this date to remind myself that I am alive and thriving.  Celebrating wins is a very powerful physiological tool. In the following article, the author explains the important health benefits that come from not just celebrating a success, but also reflecting back on your journey and what it took to get there: FCCOnline

Making it through a cancer treatment whether it is chemotherapy, radiation, surgery, complementary therapies, or any combination of these is something to admire.  The initial diagnosis usually comes as quite a shock to a patient.  I have yet to meet many survivors that have told me, “Yep, I just knew it. I totally knew I had cancer.” My personal belief is that it's just beyond comprehension to think that you personally can get handed such a lethal prognosis.  Fairly soon after learning of the disease, serious measures are taken to rid the patient of the illness that is ravaging their body.  Next comes the battle to keep as strong possible, both physically and mentally, while dealing with side effects and all other stressors that might be surrounding a particular patient at this given time.  Work is still calling, families still need to be fed, bills need to be paid, pets need to go to the vet, reunions happen, etc.  Typically, the time of diagnosis and treatment is when support comes pouring in.  Patients at the very least have nurses around them to answer questions and concerns.  Family and friends rally around to help not only the patient, but often the primary caretakers as well. When it’s all said and done, there are thankfully plenty of people today that reach the other side of cancer treatments and are now lumped into the category of “survivor.”

Today I have spent more than ten grateful years in the survivor category for lymphoma.  I humbly acknowledge it is not a common statistic.  One major gift I was given during treatment was that my body was responding to it.  Aside from managing hospital stays, blood counts, painful mouth sores, paralysis of my digestive system, neuropathy, early onset menopause, severe nausea and vomiting, blistering, muscle wasting, total hair and nail loss, “chemo brain,” and general feelings of malaise, my tumor was progressively getting smaller.  No worries for me ever that the chemotherapy wouldn’t rid me and my chest cavity of the intrusion that erroneously tried to take up space there.  However, living as a cancer survivor has some tough and often peculiar challenges that I was not expecting as I entered into this new phase. 

The day after my last chemo treatment, I joined roughly 30 of my girlfriends at a pool house for a bachelorette party.  Two of my childhood friends were getting married and were having a joint bachelorette celebration.  I was a bridesmaid in both weddings and both had recently stood with me in my own.  I got picked up at my house by a few friends that were also going to the shindig.  I was dressed in a one-piece bathing suit because I was embarrassed of how emaciated I was, as well as a cover-up and a straw hat to cover my bald head.  I excitedly walked out to get in the car and the girls looked at me a bit stunned and said, “Kim are you sure you want to go?” “Um, yes” I replied.  I wouldn’t dream of not supporting and celebrating this special time in my friends’ lives.  After all, not only had we known each other since childhood, they had both just held my hand through a very personally challenging time.  I wondered often if the people that supported me would ever know the depths of gratitude and indebtedness I felt for them? I didn’t have the words to express my feelings but what I knew for sure is that “yes!” I would always show up for them.  I seemed to be the only one at the party that was clueless as to how badly chemo had overwhelmed my body.  I weighed less than 95 lbs.  The fattest part of my thigh was my knee, the bones of my body were protruding out in disturbing ways. One of the future brides followed me around like a puppy dog on her day, holding my hand as I walked down the pool steps or getting me out of the jacuzzi after 30 seconds, respectfully letting me know that I had been in there long enough. I still smirk at the thought of her love and concern - it was her nature and mine was to be embarrassingly stubborn - a quality that helped saved my life. Chemo had broken my body and it would take time to recover but it never broke my spirit.

Living as a survivor and relearning a new normal is what would challenge me and my spirit to the core.  That day at the party, while everyone was having fun eating, drinking, and dancing, I looked around and knew I no longer belonged as I had before and I wasn’t sure if I ever would again.  I had to run away from the crowd to puke after all the bridesmaids took a “body shot” off the daily entertainment.  The blue and green jello with a liquor mixed in named something like “Candy Bomb” was not a good combination for my fragile system. I was also struggling physiologically.  People around me began to get on with their lives.  Rightly so.  I had received so much of their love and support.  They now could breathe a sigh of relief that I had no sign of lymphoma in my body.  But why couldn’t I do that same?

I was just beginning to process all that had happened.  I had experienced so much death in the six months of my treatment and for years that would continue.  I had survived a disease that many people do not.  It is a known fact that there is not a cure for cancer.  Treatments, yes…not a cure.  I felt guilty going to funerals of other patients I had been treated alongside.  Families were mourning the loss of their loved ones and as I stood with them to pay my respects, I felt a strange feeling that can best be described as ashamed.  It was so odd.  I wanted to live; I was beyond grateful to be there but in those moments it just seemed like I was unwanted. I could feel that my presence was often odd for the families too. These people saw me getting treated with their loved ones that didn’t make it, but I did. Going to my oncologist’s office for a check-up also seemed bizarre.  I wasn’t well for years after.  However, it was hard for me to talk about why I couldn’t manage more than a few minutes of cardio, or ask about my terrible digestive issues, or mention weight gain, discuss my hot flashes or a variety of other minor problems considering what I had just been through.  I knew that people were sitting out in the waiting room literally dying and needing to get in the room that I held. Asking about my achy joints or low energy just seemed selfish. Therefore, I existed in a state of “survival” not “living” for years that followed. “Survivor's guilt” would be a term I would come to experience, study, and learn a great deal about. It is not a feeling that will ever go away for me; it is a feeling that I have come to except, acknowledge, and now have adequate tools to help me process.

The initial shock of a diagnosis is just that - a shock.  When you get shocked in the cold winter months by dry static electricity, it’s not fun.  You quickly pick up on a system to prepare yourself for the next or potential oncoming mini jolt.  That is exactly what I did with cancer.  This disease would not pull the same trick on me again.  I would make sure of it.  This time I planned out everything.  I planned out what I would get and when.  Initially I had no idea how toxic this plan was.  I was sick, depressed, and lonely because I didn’t share my struggle with anyone. I didn’t know how; I didn’t even understand that what I was feeling was a normal occurrence for not only cancer patients but a basic expression of anyone that has experienced some sort of trauma.

Having a spiritual practice and trusting and believing there was something bigger and better for me helped me then and will always be a part of my life. Even in my depression and confusion, I had a deep belief that there was something better for me and my survival was not an accident. Having people around that knew me well and way before I had gotten sick, finally got the courage to remind me, “Kim you forgot what it feels like to feel normal.” One day after I came home from teaching 5th grade, I turned on the Oprah Show. I am imagining the date was 9/11 because the guests that day were all survivors of the terrorist attack on the World Trade Center. These people were talking about what it was like to find a “new normal.” I had never heard that term before but I will never forget it.  I realized I had been going about things the wrong way.  I was desperately trying to squeeze back into my old life just as I had left it.  When the truth was, that I just wasn’t the same person.  The new person wasn’t bad or broken, she was just different and I had not quite learned or accepted these changes.

My grandmother gave me the new documentary that had just come out, “The Secret.” Watching that movie taught me the power of my thoughts and beliefs.  Prior to seeing this, I spent my days planning out how I would tell my friends and family should I come out of remission.  I always envisioned and tried to prepare for what kind of cancer I would get next.  After I watched The Secret, I not only NEVER did that again, I placed reminders and affirmations all over my house, bathroom mirror, car and classroom to re-train myself how to think.  I began to spend my time thinking about all the good I had in my life and focusing on attracting the positive things I wanted to come toward me.

Another tough matter for me was living with the knowledge that something very bad could happen to me.  I no longer had the privilege of thinking a cough may not be a sign of something much worse. Or that a bad repeated headache wouldn’t mean something other than, I am just dehydrated. One of the main signs of the lymphoma I had was itchy skin. Even after my treatments were finished and my scans were all clear, my skin itched so badly, I constantly felt like it was on fire. After my oncologist did two bone marrow biopsies to confirm this skin issue was not telling us my cancer was back, I sadly looked at him and asked if this was some kind of bad joke. I was trying so hard to ignore the challenges of remission but this skin problem would not let me. I knew he was sorry I was dealing with it but he did assure me that I did not have cancer and that was all he could do. He was in charge of the cancer part. I was in charge of my mind.  

Every type of cancer and staging of the type has a different process for remission.  Remission means that the cancer is gone from your body but might be dormant waiting to come back out at any time. Imagine what that is like? The waiting. The waiting for your family. My particular remission process was a PET scan every 6 months for 2 years and then a PET scan once a year for 3 more.  PET stands for Positron Emission Tomography and this type of test uses a special dye that has radioactive tracers that will “light up” a hot spot in your body.  Your main organs, brain, heart, are always hot spots because they are very active, and in addition, certain types of cancer will also light up.  Lymphoma is one of those cancers. Possibly one of the scariest parts of receiving PET scans is that the amount of radiation received over time can statistically cause cancer again at a higher rate. So the very thing that could be helping you now, could also be harming you in the long run.

Every time I went in for a PET scan, I would get a hospital band with my name on it. I was never alone. Almost always, it was my mom that would stay with me through the experience.  We both knew that between the stress of the actual scan and the waiting, it was scary.  We didn’t talk about it much, mainly she read to me while I received an IV of radioactive material.  The nurse administering the injection wears a huge protective glove while holding a metal canister that smokes as it’s pulled out of a freezer.  The nurse is very careful to not come in contact with this dangerous liquid before it’s injected into my veins.  I wait 45 minutes so the material can “uptake” into my body to see what might show up.  I then get wheeled down the hallway past the CAT Scan, and MRI and into the Nuclear Medicine department. There in a room is where the PET scan lives.  I get helped on to the bed because I am not supposed to move at all.  Any muscle movement can alter the results of the scan.  In fact, days before, I am also told not to exercise or do any major lifting.  I get adjusted on the bed with my arms above my head.  I will stay that way for 26 minutes while I am pushed through two different donut shaped tubes.  The scan does its job and the reader looks at what is being transmitted to the nurse in his glass enclosed room.  When it’s all done, I will wait ten days to learn if my cancer has come back.  The waiting never ever gets easier.  The ten days I wait are agony.  I try to pretend that life is normal and I can go about my daily routines.  Truth is, all 21 times I went through that process, I braced myself and held my breath desperately hoping I would be able to continue moving forward in my life.  The physiological effects of anxiety that is placed on patients that wait for medical news and test results are well-documented.  This article explains how the stress can actually have adverse effects on health: Science Daily, as well as this one: New York Times.

For me personally, I did not begin to regain control of my life until I was finished with receiving my scans and satisfying the medical community that my cancer was likely to not return. That was 5 ½ years after my diagnosis. I could then really give 100% to believing it myself. I realized then, and it’s a foundational belief that drives me today, that living in fear is not living.  I would learn how to love myself and my new body. I would learn to approach all things from a space of love. Where love exists fear cannot. I don’t get it right every day.  It is a practice; a training.   It isn’t that I don’t fall off the wagon from time to time, but I found my new normal.

In addition, I know that every day I live as a survivor, there are scientists working tirelessly to find cures for my disease and many others. There are people fundraising in some of the most thoughtful and selfless ways so that dollars can go to find cures so that lives are spared.  Every new day is a new beginning.  A chance to move forward with the lessons from my past, so that I can make my future exceptional.  In many ways we are all survivors of something. I have embraced being a survivor, and now I teach and help others how to do the same.