“My cancer story started in my 20’s.
My mother and two maternal aunts were all diagnosed with Breast Cancer. My mother carries the BRACA gene, but neither of her sisters do. I was tested for the BRACA gene and all other known breast cancer genes and the result was negative. But given the family history I was told there probably is a gene but it is not known yet. I had dense breast tissue and started receiving biopsies and mammograms and the age of 21. I went through years of scares of suspicious lumps. They were always benign.
At the age of 26, I went for another biopsy to a different doctor. This doctor refused to give me a biopsy because my breast tissue was so dense that it felt like lumps everywhere. He mentioned that I should consider a mastectomy. I was startled that he would even suggest that. My mother had undergone a double mastectomy and I knew it was huge surgery. He gave me referral to a cancer hospital for a consultation. While waiting for my consultation, they carried out more genetic testing and concluded I was high risk for breast cancer. When I went home and thought about going ahead with removing my breast I just kept thinking, ‘But I am too young.’
During the visit with the surgical oncologist, she did not push me to make any decisions but asked me to be sure of my decision. When the surgeon left the room the resident said to me, ‘You know this is not a boob job, right? I will be surprised if your insurance approves this,’ I was so taken aback. How could I think this was a breast augmentation. I knew of the nerve pain my mother feels to this day, the unsightly scars, the implant rippling, having no sensation in any of the skin and her low self esteem. If I was going to do this, I was going to do it to save my life.
My aunt was diagnosed in her 30’s and passed away shortly after. I agreed to the surgery because I could not take the waiting game anymore, I could not stand to do another biopsy. I could not stand to sit in the mammogram waiting room with the crying women all in gowns just given the worst news of their life. I was concerned with how I would look after, but it wasn’t much of a priority for me. I went ahead with the surgery (bilateral prophylactic nipple sparring mastectomy with immediate reconstruction over the muscle).
The surgery went well and lasted 6 hours. The healing process took much longer than I thought. I was feeling good about how they looked and was impressed with the results. The most frustrating part was not being able use my arms and the searing nerve pain till this day to the point that I can’t even let a seat belt sit anywhere on my chest without padding on the belt. I was fine with the scars and felt like no one could even notice them. The scars were on the sides of my breast because my surgeon said the shape of my breast would be better if she didn’t do the scars under the breast.
Following surgery, my in-laws took my husband and I on a trip to the Bahamas. While we were at a pool, I could see these women looking and pointing at me and pointing to their sides. My side was faced to them so I knew they were talking about my scars they could see while I was wearing a bikini top. Once I fully faced them with my body they erupted in laughter. Could they really be laughing at me like I had a ‘bad boob job’? I had never felt bad about the way I looked before that. I felt so embarrassed and wished I could yell in their faces.
I would tell them how torn I was to make a decision to remove my breast, how haunted I was thinking about whether I had made the right decision or not and the never ending nerve pain I feel. I shared what these women were doing with my family. They suggested we should go as they could tell I was visibly upset. As we were leaving, my father in law approached the women and informed them I had my breast removed from cancer and they should mind their own business. Not one of them said anything. It felt great having someone stand up for me, but I couldn’t shake the sadness I felt.
Following that incident I started only wearing tube top bikinis and putting makeup on my scars. With my husband, I started wearing a bra all the time and wouldn’t remove it during intimate times. I wondered how I could go from being so joyous to not having to actively worry about breast cancer anymore, ecstatic about the surgery results, to mortified to even show my breasts because they clearly don’t look real. I dreaded another bad boob job comment.
My husband was my gift to this hardship. Not one day has he ever made me feel different or less attractive. He would beg me to take off my bra while we slept so he could feel all of my skin. We made inside jokes about how my breast are now ice cold to the touch. We played games as some of my nerve endings grew back, he would touch somewhere on my breast and I would cover my eyes and try to guess. He reminded me that the words of strangers mean nothing and no one could take away my strength through all of this. It also meant a lot to me when my mother told me that she wishes she had the confidence I had post-mastectomy. That she admires my strength at such a young age because she doesn’t know what she would have done at my age with this kind of decision.
I thought my cancer story in my 20’s would have ended after my mastectomy…
When I was 29, I became pregnant with my daughter. Throughout my pregnancy, I experienced severe lower back pain. I could not sit anywhere without sitting on a donut pillow. I blamed my tail bone pain on the fact that I was born with mild spinal bifida. I had tailbone pain most of my life but before becoming pregnant it felt as though something was pushing on my tailbone.
I mentioned it to my husband and we both agreed that it was probably a tight muscle. For all of my adult life, I had struggled with constipation. I would bring it up at doctors appointments and they would assure me it was just a side effect of the medication I was on and to just drink more water. I am a big water drinker, yet my lips were always chapped. No matter the amount of water I drank, I always seemed dehydrated.
Prior to becoming pregnant, I complained at the doctors of bloating and constipation. I was given an abdominal ultrasound and was told I had an ovarian cyst and that this was probably causing my trouble. During pregnancy, the constipation was unbearable and I had to regularly use a laxative. When I brought up the bowel and back pain issues I was told it was just related to pregnancy and they would send me to physical therapy, tell me to ‘take it easy.’
When I was in the second trimester, I had an episode of loose stools and blood for a week straight. The toilet bowl would fill with bright red blood. My mother took me to the emergency room because I couldn’t even sit up or move my legs without being in pain. I was told the baby looks good, so I will just have to wait out the symptoms because it was probably a virus. I begged my mom for us just to leave because everyone was making me feel like I was overreacting so I should just be quiet. My mother was furious because had I not been pregnant, they would have run every test on me with the symptoms I was presenting.
The pain and bowel issues continued through pregnancy. While I was 8 months pregnant, I went into labor and delivery complaining of pelvic and back pain. I was in so much pain I could not stand upright. I shared my bowel issues with the doctor and let her know that now not only is there loose stool and blood, I was no longer able to hold my bowels or urine inside me anymore and they were coming out uncontrollably. They drew my blood and checked on the baby. My blood came back and my white blood cells were highly elevated. I had no symptoms of a cold or flu, yet they told me I was probably coming down with something. That my pelvis hurt from the bones spreading in preparation for birth.
The following morning, I woke up in even more pain. I got out of bed and immediately sat on the ottoman in our bedroom and cried out to my husband. I was trying to stand but my legs would not work. I started to panic and asked my husband to lay me in the bathtub. Maybe the warm water would help relax what was hurting me? While in the tub, I began going into labor at 33 weeks pregnant, contracting ever 2 minutes. The paramedics had to be called because I could not move and would not let anyone touch me. I was screaming in pain even though I am usually the opposite when I am in pain and will be very quite and internalize things. This screaming was uncontrollable and I knew something was wrong.
They were able to lift me out of the tub and take me on what seemed like the longest ambulance ride of my life. I vomited the entire ride to the hospital and all over the lobby floor of labor and delivery at the hospital. During triage, I was accused of using recreational drugs (I wouldn’t even drink caffeine!) and needed to simply calm down and that I may just have the flu. Doctors tried to stop labor but after MANY hours of leaving me in pain, they decided to induce me because they suspected I had an infection in my uterus, but they couldn’t confirm because it would take 3 days to get the results.
In that moment, admist the pain, the only thing I cared about was my baby. I yelled at them, ‘No, she can’t come now. She isn’t ready and the nursery isn’t done!’ I knew that this amount of pain was not just labor; I had given birth before and this was extremely above that. I was told I needed to calm down and was overreacting. When the doctor would press on my stomach and asked where it hurt all I could say was EVERYWHERE. The doctor told me it was impossible to hurt everywhere and I needed to tell her an exact location. I couldn’t answer her question because where the pain was coming from was unidentifiable.
I was finally given an epidural and it allowed me to sleep for a bit because I was beyond exhausted from pain. It took awhile to dilate but when I did it was from 4 to 10cm in under two hours. The baby came out in 3 contractions and I thought my pain would now resolve. The baby went immediately to NICU and was placed on a ventilator. My husband would wheel me down a floor once a day to go see her. They said she had an infection, but they could not pinpoint what it was or where it was coming from. I agreed for them to give her antibiotics despite knowing what was causing this. This was a decision that would save her life.
After giving birth, I was still in extreme pain and was told it was just postpartum pain and it would take time. At this point, I still could not even stand up or walk straight. I was discharged and later that night developed a 103 fever. I went back to the hospital with fever, shaking uncontrollably, and vomiting. All I could think about was how cold I felt and kept asking for blankets to be placed on top of me. I was again told the fever is probably related to birth. I was admitted and my symptoms were under control with medication.
Suddenly, the next morning, I had severe sharp pain on the left side of my stomach. I was again screaming in pain. The hospital had no idea what was wrong with me and still weren’t taking me seriously until I was vomiting up my own stool. My heart rate sky rocketed and my blood pressure plummeted. Within seconds, I was surrounded, getting prepped for emergency exploratory surgery. They had me sign a paper that said they could remove any part that needed to be removed. I was in surgery for 4.5 hours.
I woke up in STICU and was told I now had a colostomy, they removed a portion of my colon and they had cut my abdomen open from pelvis to ribs. I had a tube down my throat into my stomach to keep it empty until I could tolerate liquids without vomiting, which would risk splitting my stitched abdomen. (That tube was really the worst!) When my husband and mother came to see me after surgery, I couldn’t stop smiling. Even in that sedated moment, I knew my pain was gone and I couldn’t have been happier. I smiled largely and showed them my new bag that I had to poop in. My husband was terrified of the way I was going to accept this. I now had a bag I passed stool in and had a large scar from my pelvic bone to my ribs. My husband knew I could be a bit vain at times, he thought these new body modifications were going to crush me. The surgery had begun laparoscopically but after being met immediately with green, foul-smelling fluid, my entire abdomen was cut open.
A few days later, the surgeon came in the room to tell me that the portion of colon they had removed was cancerous and that I was septic. It felt like time had stood still. I began sweating and was unable to react or even think at that moment. How could I have colon cancer, isn’t that an old persons disease? I was told I was stage 2A. The tumor was 3 inches in size. They removed 14 lymph nodes and none were found with cancer. When the hospital called for a general surgeon, an oncology general surgeon showed up and when he saw the tumor inside me, he knew exactly what to do.
He then followed up saying there were some lesions found on my liver during imaging and it may mean the cancer has spread. I went for further imaging of the lesions and waited for what seemed like the longest three days in the hospital bed. During that time I thought to myself, can I really beat this? The cancer had already come so close to claiming my life, how would I win this war? My newborn baby at the time was down in the NICU with her own set of challenges. The pieces were all coming together.
My colon had perforated sometime earlier that week and stool seeped into my abdomen, creating a giant infection. So, when I was asked where does it hurt and I said everywhere, I really meant it. My blood was infected so clearly the infection had passed onto the baby. All I could think about was how my body betrayed me. How could I have been in a cancer hospital just 2 years earlier, and this was never found? I was brushed off by doctors and hospitals for my GI pain solely because I was too young. So, of course, it ‘couldn’t’ be anything more than dehydration and hemorrhoids. When I took time to think about it, I was grateful for how my body responded to the infection. If I hadn’t gone into labor, the infection would have surely taken my baby’s life and mine. If it weren’t for the pregnancy, the tumor would have never been found until a later stage.
I again received genetic testing, but this time for colon cancer genes. I would rack my head day and night trying to figure out how I could get this cancer. I would think, ‘But I don’t have any genes nor do I fit any of the risk factors.’ After exploring the internet, I uncovered newer articles warning of the uptick in young adults with colon cancer. I went for a second opinion where they also confirmed there is a disturbing uprising and they are suspecting something environmental. The pregnancy is really what saved me.
My growing uterus kept the colon contained in a corner and exacerbated the symptoms to help with detection. This cancer often goes without symptom until it’s stage 4. I was released from the hospital 16 days later with a picc line. My loved ones had to administer antibiotics at home to me through an IV for an additional week to continue to treat the original sepsis infection.
Before chemo started, I had to get a port placed (a catherter inserted into main vein into my heart to administer chemo). While placing the port, the resident nicked my lung and I started to develop a collapsed lung. The next day they placed a chest tube because the collapse had become worse. The chest tube placement was very painful and I was awake for it with only lidocaine to help with surface pain. The tube remained in for a week, usually I would have had to stay in hospital especially to manage pain but they knew I was tough and would handle anything to get back home to my baby.
With the tube came severe back spasms and no use of my left arm. The oncologist said my cancer has been growing for years. I was furious knowing how long I had been living with this disease and upset with all the times I downplayed my feelings and pain solely so I would stop being considered as overreactive. I now had a new set of scars and a colostomy bag that I had to learn to care for every day. A nurse would come a couple times a week to teach me to care for the bag.
It took a great amount of time to learn to care for my ostomy. I would think about how I could now go out in public and not be embarrassed about the uncontrollable gas noises I now make from my stomach. I dread going anywhere quiet, if I am sitting in quiet waiting rooms you will see me with a sweater piled on top of my stomach to mask any noises it makes. At first I felt fine about laughing at any noises it made, but when loved ones would laugh I would get angry and embarrassed. I would think, ‘How dare they laugh at my situation.’ If it were them, they would have fallen apart. I know they were just trying to lighten the mood, but I was bitter.
When I first got the ostomy, I bought all the bag covers, wraps, and anything else to make it not seen. I would not have sex with my husband until I had a cover on because I would think he must think this bag is disgusting and how could he ever be turned on seeing a bag that holds stool just hanging off my body! But again, he paid no mind to it and did not treat me differently.
I have come to love my new scar and believe when I potentially get my ostomy reversed, I will love that scar too. All of these scars are just phases of my life and have pretty cool stories of undeniable strength. There are days I struggle with the ostomy bag, days I shower in shirt just so I can pretend its not there and can take a shower and have a second not being reminded of my cancer struggles. There are days I accept my body and days I wish I would have just died than rather deal with all of this. I tell my husband I have the unprettiest of the cancers, but how lucky I am for how treatable this cancer is.
I have promised myself to never disregard my intuition and downplay my symptoms as to not seem as such a burden on doctors and my family. My pain was real and any pain I feel today is real and should be fully evaluated. And will never allow myself to bullied into thinking my pain is overreactive.”
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