Chapter 2: Kimberly

Chapter 2: Kimberly

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As an average teenager, I had a part-time

job and was in school pursuing a nursing degree. I considered myself pretty healthy.

Well, a pretty healthy person who would end up in the hospital for occasional vomiting episodes. Â Never could I have imagined that these episodes would be a symptom of something big, something that would change my perspective on life forever. !

Spring semester was almost done when I started to feel sick, sicker than my usual

‘face in the toilet’ vomiting episodes. I took an ordinary trip to the bathroom and was met with a horrible burning sensation, something I had never felt before. I was surprised, but didn’t think much of it. My mom said I probably had a Urinary Tract Infection (UTI) and not to worry. But I did worry. Nothing about what I was feeling felt common, and the burning sensation turned into lower abdomen pain. The pain left me walking funny, and it was so obvious that my sibling laughed at me for moving like an old person. Mom took me to the local clinic

for a checkup. My urine test results had the doctors guessing I had appendicitis or a kidney problem and I was sent home and told to see my primary doctor for a follow up. Mom drove me home but we weren’t there for long. That night I spiked a fever and she took me to the emergency room with no clue what was happening to me. I was oďŹƒcially worried. !

I was studying to be a nurse and, up until this point, had never been a patient in the hospital. Being on the receiving end of

treatment was strange and uncomfortable, especially given my fear of needles. The first thing the doctors did was poke me a bunch of times and run tests. No luck- they still couldn’t figure out what was wrong. They ordered me a bunch of scans and something called a Laparoscopy. For the Laparoscopy they had to cut into my side and insert a camera to look around and take a biopsy.

Everything was happening so fast. The results of the biopsy landed me in an Oncologists oďŹƒce a few days later. !

On April 13, 2009, the Oncologist came into my room and told me I had a disease called Pseudomyxoma Peritonei (PMP). I thought to myself “I have Pseudo what?”

PMP is a rare disease that originates from the appendix that affects 1 in a million people per year. What are the odds? When I thought of being 1 in a million in anything, I thought of winning the lottery or becoming famous, not being diagnosed with rare disease. Nobody ever thinks that. To make things worse, the doctor couldn’t tell me how I got the disease. He just knew it wasn’t

hereditary, that the prognosis was poor, and that it usually went misdiagnosed. I didn’t take the diagnosis seriously at first. Folks walk around every day with strange rare diseases and are able to live normal lives. I figured I would be fine. It wasn’t until I realized PMP was not “just” a disease but a rare type of cancer that I realized how big this thing was. Adding that one word “cancer” to my diagnosis made everything different and I knew I wasn’t fine. !

I was referred to a well-known Oncologist/OBGYN and underwent another round of exhaustive tests, which meant lots of pokes with needles and more scans. I was tired, overwhelmed, and clearly not fine. I already felt defeated when the doctor came in to review my results and treatment plan. I didn’t question or challenge anything he told me. My brain at that point was exhausted from trying to process everything that had happened to me in the last few weeks. I simply thanked him for his time and agreed with his suggested treatment. I had

no energy to do anything but trust that he would take care of me. !

On April 23, 2009 I was admitted to the hospital for surgery and left the operating room without my left ovary, 1/3 of my colon, my appendix, a grapefruit sized tumor, and all the mucin inside my peritoneum. This cancer was literally tearing me apart; I could feel it. I was devastated and woke up from surgery in the worst pain of my life. On a scale of 1 to 10 my pain level was 99 and the nurses were at a loss for how to help me. I

was eventually given an epidural (yes, what pregnant ladies get before birth), and I remember squeezing the hand of the male nurse standing next to me so hard trying to distract myself from the pain. It didn’t work, and my hate for needles grew as I felt every inch of that thing go into my back. !

I was an 18-year-old girl, fresh out of high school, trying to start life as an adult. I had a boyfriend and a family that loved me. I never imagined that my first brush with medicine would be as a patient. Being

placed in the Pediatric ICU after surgery reminded my doctors and I how young I really was trying to fight a disease that was having no mercy on me despite my age. My mom was by my side the whole time. I know she was worried but I couldn’t comfort her; I was going through hell and I couldn’t think past the pain. !

While in the hospital, I remember waking up one night to my mom slapping my face. I was totally confused. I kept screaming at her and insisting that she let me rest. Once I

gained full consciousness, I learned that she was trying to wake me up because my vitals had bottomed out to 0 and I had flatlined. I had been literally dead for a few moments and she was frantically trying to wake me up. It became clear that this cancer was not going to cut me any breaks. As time went on, the drama of my complications from surgery did not fade. Surgery left me with a bladder and bowel fistula, in addition to me having urine and stool seeping out of my incision. Nasty, right? !

Once they considered me “stable,� I was sent home with a urinary catheter. The doctors hoped the catheter would prevent the urine and stool from seeping through my incision and I ended up having to live with that thing for months. However, it didn’t work, and my condition became worse. Back to the hospital I went, staying for weeks at a time and never getting any closer to normal. I missed being normal. I grew frustrated and angry at being what I considered a permanent fixture in the hospital. I was lonely and felt left behind.

My family and friends were all on the outside having normal lives and I was stuck in a hospital bed with cancer doing whatever it pleased to my body. My family came to visit for holidays, but it was clearly not the same, I didn’t feel like celebrating anything. I was a prisoner in the hospital and a prisoner to my body. Depression set in hard-core as the news from the doctors became more and more unclear. They had no idea what to do with me, and had no clear answers about what cancer was doing with my body. !

Another surgery was scheduled to repair my bladder and bowel fistula. I was down to only one ovary and given my track record with surgery, I knew there would be complications, so I made a request. I wanted the eggs in my remaining ovary to be frozen so that I could regain a bit of hope for the future and one day be able to have kids.

Devastation set in instantly when the doctor told me flat out that saving my eggs would not be possible if I wanted to have surgery. I kept repeating to myself what he told me, “If I wanted to have surgery?� I mean, there

was really no choice for me. I could either have the surgery or never become a mom, or I could die trying to freeze my eggs and still never be a mom. I became a teenager that would never be a mom. Most kids at my age try very hard to not get pregnant, but understand that later on in life they can exercise that choice if they wanted to. That same choice was no longer available to me and I was once again dierent from everyone else. I felt isolated and alone.  I remember crying on my way to the hospital for surgery, I had no words. My mom and

aunt were joking around saying “You wouldn’t want to have kids anyway. They’re a pain in the butt.” I knew they are trying to make me feel better, but still… cancer took away my hope and I was literally hopeless as the doctors prepared me for surgery. I left the operating room with more of my colon removed and my last ovary gone. The surgery failed and I was sent home with a Wound Vac. For a month I used the Wound Vac to try and “fix” my surgery complications-- another process that landed

me in a bunch of pain. I could literally see the inside of my abdomen. Â !

Depression was a constant for me, with my reasons why growing every day. A Psychiatrist was added to my long list of attending doctors and I shared with her how beyond angry and distraught I was that this cancer had to happen to me. I wanted her to listen. She kept asking me if I ever had suicidal thoughts, which I thought was a weird thing to ask, but I kinda understood given my current state. Even with all that

cancer had handed me, I had never thought of taking my own life. There were times that I told God to just take me so I didn’t have to suffer anymore, but I never considered taking my own life. I wanted to live but needed her help making it out of the dark place I was currently living in. She didn’t listen. On her order, my family began hiding my prescription pain meds thinking I would overdose on purpose. I told them I wasn’t suicidal but they didn’t listen, either. I was helpless. !

Cancer made me feel ugly and useless.

As a healthy person I was 5’6 and 125 pounds. As a person with cancer I was down to 87 pounds and I looked like a skeleton. I was weak. Mom would encourage me to go to the mall and hang with my friends all the time. She wanted me to feel normal again. I wouldn’t go; I hid from the world. I didn’t want anyone to see me and I didn’t want them to think I looked this way because I refused to eat or something. Cancer did this to me. !

Three years later my weight eventually started to come back. I managed to stay out of surgery and started to feel normal again.

By October 2012, I was back in school and working. Constant checkups became normal, as did my elevated tumor markers.

The doctors didn’t seem alarmed by my test results so I didn’t worry. One night I remember coming home starving from school like usual, because we weren’t allowed to eat in class. Mom made dinner and we ate together like we normally did and went to bed. That same night I woke up

with horrible stomach pain which sent me to the bathroom throwing up like crazy. The next morning I was still feeling sick, but I had to get up and go to school for mandatory clinicals. The last thing I remember was putting on my scrubs and then strangely waking up in the emergency room. Mom told me I was in the hospital because when she came to check on me that morning before I went to school, she found me passed out on the floor. I was too shocked to be worried at that moment.

Because I was totally dehydrated from a

night spent throwing up, the nurses were struggling to find a vein. My fear of needles was consuming me as the nurses attempted 10 times to start an IV. The usual suspect tests were ordered and I waited for hours to hear the results. The doctor came in and put her hand on my leg. She had this horribly sad look on her face and said, “I’m sorry, but your cancer is back.” I couldn’t believe what I was hearing. How did this happen? The doctors said not to worry, but now my cancer was back and taking away the little bit of normal I had in my life AGAIN. I

started bawling my eyes out. Mom was crying next to me. I felt transported back 3 years and lost sight of all the normal living I had been experiencing recently. I was back to being an abnormal cancer patient. !

I needed to vent. Seeing a psychiatrist earlier in my treatment did more harm than good, She didn’t help. I just needed someone to talk to, someone that would actually listen. I logged on to Facebook. My sharing was met with a flood of encouragement from my Facebook friends. Their kind words

made me stop crying and my feeling of isolation and loneliness faded. Finally, I felt supported. I couldn’t help but think of my family and my boyfriend, the people who had been with me since the beginning of my diagnosis. I was not alone in this fight against cancer. !

My cancer was back, and I had flashbacks to the surgeries when I was first diagnosed.

When I arrived I learned that my oncologist was out of the country. Hearing about his absence didn’t seem like a big deal: I figured

another doctor would step in and take care of me. Nope. The other doctors refused to perform the surgery without my out-oftown doctor’s consent or presence. What?

There was a GI surgeon who agreed to address my small bowel obstruction issue but would not mess with my cancer. After looking at my scans, he told me that removing the tumors wasn’t even an option because they were everywhere. Everywhere? !

The surgeon worked with 20 other doctors and pathologists at the hospital to

come up with a treatment recommendation. I was prescribed systemic chemotherapy with hope that my tumors would shrink. A specialist was also recommended for my case, but he would not be available for treatment until March 2013. All I could do was wait and hope that the chemo did its job. In December 2013, when I thought I couldn’t feel any worse, I started 4 cycles of chemo and it literally made me feel like crap from head to toe.

The least of my problems were the constant nausea and vomiting. My biggest issue was

the Neuropathy that set in on arms, legs, hands and feet, turning them black. Â I was sensitive to the cold (not to mention it was winter in Chicago). I got tired so easily. I passed out when I showered and was beginning to lose my hair. !

In March 2013, I found out that the chemotherapy didn’t even work. The tumors had not grown anymore, but they did not shrink. I was devastated, I did everything that they told me to do, I endured the pain of chemo, thinking it would be worth

something in the end. My pain was worth nothing and I was still as sick as I was before chemotherapy. They took my case in front of 20 doctors-- 20 medically trained professionals-- and collectively they couldn’t help me. All I could think was that I went through all this for nothing. By now it’s March and the specialist recommended for my case was finally in. After 3 months of waiting, he ended up being no help and simply reiterated that I had tumors everywhere. They were on my liver, spleen, diaphragm, rectum, small and large

intestines, uterus and bladder. I was just in awe and all I could do was cry. I stopped crying long enough to leave the hospital and go home. At home I totally broke down in front of Mom. She couldn’t handle it and was so upset. I tried to comfort her by promising I would only cry that night, and that tomorrow I would be ok without the tears. !

My perspective on life was forever changed. I was so used to taking life for granted. Totally selfish, I only cared about

myself. I focused on the negative of every situation when I should have been counting my blessings. It wasn’t until life felt out of my control that I started to appreciate it and the people around me. I met a 10-year-old kid from the Philippines through Instagram.

He, too, was fighting for his life, and inspired me so much. Chemo left him bald and the whole left side of his body from his hip down to his foot was removed. Finding a reason to smile was impossible for me those days and I often wondered how he found the smile captured in each of his Instagram

pictures. He taught me that pictures were worth a thousand words, and fear was not one of his words. Powerful. As corny as it may sound, knowing that he was going through something similar really did help me and for once, I didn’t feel alone. He inspired me to fight my cancer with a smile; I was finally living again. By embracing the positive things in my life, I became like my 10-year-old hero that inspired me and I started sharing my story with others. My posts didn’t go unnoticed and I had a social media family that spanned the world. We

prayed for each other. Strangers sent me flowers, rosaries and bracelets that were blessed by the Pope. All the random acts of kindness melted my heart. I prayed to God, thanking him for waking me up everyday, for all the blessings, and for all the people that cared about me. !

A month after chemo failed, I was scheduled for what would be my most complicated surgery to date. My 4th surgery was 13 hours long and the doctors didn’t think I was stable enough to make it out

alive. They removed both sides of my diaphragm, my spleen, Âź of my liver, and parts of both my small and large intestines.

Shortly after surgery my lungs collapsed, and I went back to the ICU. More chest tubes were inserted in my sides. Even though I was sedated, the pain meds didn’t work. I could still feel every single tube going in me, including the one they shoved down my throat. I went to sleep with surgery complications and woke up completely disabled. I was totally confused. Eventually, I realized that what felt like the next morning

was actually a month later and it was now June.  They had placed me in a medically induced coma because I couldn’t breathe on my own. I had a tracheostomy and was on a ventilator. Unable to communicate or walk, I was transferred to a rehabilitation center for speech, physical and occupational therapy. !

I was confined to another hospital room for a month, and I was in a bad emotional space. Never wanting to see my reflection, I stayed away from the mirror; I just knew I looked so ugly and terrible. My weight

dropped to 80 pounds (45 pounds below my normal weight). During rehab, my focus was to learn basic functions like hand and eye coordination. For the longest time I wasn’t able to even lift my hand to my head. One day I caught a glimpse of my reflection in the phone and noticed that I was totally bald. I was outraged. I asked my mom why she hadn’t told me about my hair. She knew how much I cared about how I looked-sometimes more than my health-- and she didn’t want to break my spirit with all that I was going through. My hair was all I had left

that distinguished me from all the other cancer patients. Now I had nothing. !

I was home by the end of June 2013 and managed to gain more than 10 pounds. Not having hair was a big issue for me so I wore wigs. I was doing better with learning my basic movements and was starting to gain confidence in my ability, when pain developed in my lower abdomen and stool started seeping out when I urinated. Gross.

My first thought was “This can’t be happening right now. What else could

happen that hasn’t already?” Back to the hospital I went to have a bunch of tests done. I was hospitalized multiple times just to have IV dilaudid because I couldn’t take the pain anymore. After the tests and scans, the doctor told me that I had a tumor on my bladder and uterus, both the size of a papaya. There was no time to remove them and work on my lower abdomen area, because I had so many tumors and I couldn’t be under anesthesia for more than 13 hours.

My only option was for them to work on the top half of my abdomen. My rectum and

uterus were added to the list of organs that cancer took from me. When they took out the tumors, part of my bladder was taken out as well. Losing my ovaries took with it my hope for having my own children, and losing my uterus ended my hope for motherhood all together. I felt like a science project. I left surgery with a temporary colostomy bag and I hated it. I felt so ugly and I just knew my boyfriend was going to leave me for someone that was pretty with less drama. He promised he wouldn’t and

never left my side. He has been there for me since day 1 of my diagnosis. !

It’s now 2014 and I’m fully aware that my fight with cancer is not yet over. I have learned a great deal about my strength and am developing a true appreciation for life with the help of my support system. Since my last surgery I actually am doing okay.

Gaining weight is still a priority for me, along with keeping my hemoglobin up and platelets down. In spite of everything that I’ve been though, I mean everything, I still

push to live a happy life and to make the best of what I have been blessed with. My journey with cancer has taught me to find the good even in bad times, and that life is too short to be anything but happy. People might say my life is miserable, but even if it is, I chose not to live it miserably. I have a lot less organs than most people, but I have one big amazing heart. I know why God choose me to fight this disease, he wants me to bring hope to people and to help them realize that life is beautiful and shouldn’t be taken for granted. I choose social media as

my way to share my story and inspire others.

I spend a lot of energy reaching out to fellow cancer patients and learning their perspective on life gives me the best feeling. Â !

I am very thankful for my family, friends, my boyfriend, and the complete strangers that constantly support me. I want to give special thanks my mother, Susan Formales, who has sacrificed everything for me and has never left my side. I was not the best

daughter a parent could ever ask for, but she treated me like I was. !

I know my purpose in this world, and that is to help others. Once I am cancer free, I will finish nursing school and become an oncology nurse. By sharing my story I hope to inspire patients to fight because cancer is just a word, not a sentence. !

“I may not have the best life, but I’m trying to make the best out of it.�

Kim Formales !