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October 15, 2015

The Tribulations & Triumphs of My Stage IV Cancer Diagnosis.

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Somewhere in my cancer diagnosis I lost myself. I lost my future, my concept of time, my hair, my ability to see past each day…it was all gone.

At  27 years old and six months pregnant, I was told I had cancer.

I remember the time of day and what I was wearing. I was told it was Stage IV Non-Hodgkin’s Lymphoma.

I remember just sitting on the floor in the office and looking at my pregnant belly. I was told there was not much that could be done.

I remember looking at my mom; I felt like an emotionless void. I was told that once the baby was born we would try chemo.

I remember that day, the time, the place, I remember the season and what it looked like outside. I remember the days leading up to that day. The lump in my neck, the ultra sound, the biopsies, the lumpectomy, the look on the faces of all the medical staff that tested me for various things.

I could see it in the face of the girl who did my ultra sound. She started off smiling and laughing with me, talking back and forth and then her tone changed. She didn’t smile anymore; she became very quiet.

She left the room for 45 minutes and came back with two doctors. I just laid there on the table alone with my giant pregnant belly, trying not to pee my pants, and trying my best not to freak out. They told me I was done and my doctor would be contacting me with the results.

Thus started the weeks of, “We can’t tell you anything, your doctor will contact you with the results” area of my life.

On to the biopsy, then the lumpectomy. I remember the anesthesiologist that held my hand and talked to me as I was getting the giant lymph node cut out of my neck. I didn’t want to be put under. I was afraid of hurting my baby. She tucked herself under the sheet, there we were face-to face, noses touching. She held my hand, I winched in pain, my eyes watered, and she cried… I will never forget her kindness.

I remember the horde of medical students holding me steady on the exam table as they did a bone marrow biopsy. I remember glancing up during the procedure and catching a glimpse of my mother between all the white lab coats. Silently sitting in a chair in the corner, rocking back and forth rapidly with her hands over her face sobbing.

I remember all of that.

All of that led up to the moment of me hearing, “You are going to die.” That is not what they actually said, but that is what I heard. For a year-and-a-half after that moment, that was the only thing my mind could grasp—you are going to die.

Life was hard and scary, it was painful and I was terrified. I was on an emotional roller-coaster and all I wanted to do was hide under my covers, but I couldn’t. I had to take care of my daughter. I had to get chemo. I had to work to keep my health insurance and pay bills. I was beyond depressed most days, the days I somewhat remember.

So much of that time is blanketed in a thick haze. I feel like I lost those days and months, that eventually turned into a year. I let cancer take away those moments and now I am left with blurry memories. In that time I let cancer take my future from me; I let it take away my dreams, and I couldn’t fathom living long enough for my newborn daughter to know who I was. I was in complete despair.

I always took my chemo in a private room. I didn’t want to socialize. I refused a port for my treatments because somehow in my mind that made all of this real. All I did was make things harder and more painful by doing so. I just couldn’t shake the thought that by having that port put in, that it defined me as a cancer patient. That this disease was somehow becoming my identity.

I began shutting myself away and closing myself off from people. I was having horrible panic attacks, even running out of the ER on one of my many trips to the hospital with a fever. The people that were in my life always told me how strong I was, but I felt that I was anything but. I broke down behind closed doors every night. I only slept because of sleeping pills. I hated seeing everyone around me sad and crying, I blamed myself for causing them pain. The more I pretended to be fine the less they hurt, so I tried to show as little emotion as possible.

I would beat myself up all the time for not being like the other cancer patients. Those cancer warriors who always had a positive attitude, the ones who were so strong and always happy no matter what. I tried to put on a show, like I was one of those warriors and somewhere along the way I ran out of energy. I ran out of the want to pretend to be strong. I ran out of the “me” that was left, and I just wanted to shut down. I wanted the world to pause for me, pause for me and my disease, pause for me and my despair. I think in my head I thought if everything could just pause and I could regroup and get through this chemo, then maybe I could make it just a little bit longer.

I remember making deals with God, begging God, crying out to God, ”Please, please just let me see Emma start Kindergarten.” I would have done anything to just live long enough for her to remember me.

I had everyone and their brother telling me to do this and do that. To drink this and drink that, rub this on your arm, and put this on your head. You name every “woo-tastic” thing, I tried it. I did them all. I drank apple cider vinegar with a chaser of cherry concentrate everyday. Someone dropped off a drink in a giant brown glass bottle, from a witch doctor in New Mexico, because it cured their sister’s, husband’s, second cousin’s boss and he had cancer too.

I was inundated with cure-alls and potions, homemade remedies and things I just had to do. If I just had enough faith I could cure myself. If I just drank my body weight in kale juice, if I just ran five miles a day, if I didn’t say or think I had cancer, if I didn’t give it “power.” If I could just do and be all of these things people were telling me, I could live!

So many times I placed guilt on myself for not being strong enough, for not having enough faith, for not being able to save myself from this disease.

Then there’s the countless awkward conversations with random people who found out that I had cancer. Not that it was difficult when you have no hair; everyone places their assumptions on your illness. So many: “My Aunt had cancer, my cousin, my neighbor, my teacher, my mother, my best friend’s, Uncle’s, niece, had cancer…oh, and they died.” Insert my fake smile here and my loss of knowing what to say.

My head was spinning and I could not focus. A year-and-a-half was gone, and I hid under my imaginary blanket. I was a fake shell of a confident person, with a terrified woman at the core.

I had everyone’s opinions and woo-tastic beliefs shoved down my throat and swirling around in my head. None of it mattered, none of what anyone said mattered. I was so lost, so terrified, so completely destroyed. None of it mattered anyway—I was going to die.

My turning point came when I completely ran out of energy to be. When I almost died of a severe bone marrow infection and I laid in the hospital cancer ward for a week. When I made the decision to go on a cancer retreat at the urging of my (now friend) cancer social worker.

That retreat saved my life.

I came hardened and cold, turned off to the world and myself. I did not leave the same person. I gained the ability to be gentle and forgiving to myself, a concept that was completely foreign to me before. I was harder on myself than my cancer could ever be. I was comparing my journey to others. I was not allowing myself to be honest with those I love.

The best gift I ever gave myself was to finally see the gift of being emotionally honest. Going forward I gave myself the grace to feel whatever I was feeling. It took me so long to see that I needed to be able to say, “No, I am not okay today.” I needed to allow myself to be upset or sad, happy or indifferent. There were days I was strong and days I was weak, times I was full of joy and times I was terrified. Until I gave myself grace I could not move past those bad days.

I am one of the lucky ones; I know this. I remind myself of it all the time. Here I am almost nine years later: my beautiful Emma is eight years old, I was married last year, I had another baby, I have three step children, I still have cancer and I am still here.

I am blessed.

I never thought I would ever say this, but cancer has been one of my greatest gifts. I know there are many who will disagree with that statement. Each of our journeys are so individual and so unique. For me I would not give up my cancer. I would not give up how I view life now. I would not give up the things I have learned. I would walk my cancer journey a million times over again to meet the people I have met. People I never would have known had it not been for my diagnosis.

I have found that there is a freedom in knowing that you will not live forever, a freedom in having your mortality brought to light. For me there is a gift in being able to realize that I am not promised tomorrow—none of us are. I did not truly grasp this prior to my diagnosis. I would have never stopped living life on the surface if it were not for my cancer. I would not be the person I am today had I not walked this path. I have been blessed to view life through terminal eyes.

My cancer, yes it is mine; it does not own me. I own it. It is a part of me, but it does not define me and I will never allow it to do so.

Relephant: 

Helpful Strategies for Dealing with a New Cancer Diagnosis.

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Author: Amy Lundquist-Stachowiak

Editor: Travis May

Photo: Flickr/Michelle Hurwitz

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Amy Lundquist-Stachowiak