I know this forum has been filled with so much sadness from the passing of beloved friends. My post isn't intended to take attention away from the mourning of those brave fighters. I just wanted to share my mom's story and attempt to remind even just one person to hold onto hope. I remember searching the internet for survivor stories, and maybe this one can make a difference in someone's life. For those of you who don't feel like reading, long story short: 48 year old female diagnosed with stage 4 rectal cancer, metastasis to the liver and lungs (twice), chemo, radiation, about 13 surgeries, anal fissure, paralyzed vocal chord,etc...4 years later, just got a scan last week showing no signs of cancer.
My mom was diagnosed when I was 18 so I was in college for this 4 year journey I'm about to tell, plus my parents were also trying to "protect" me at first by hiding as much as possible, so I apologize for not knowing the specific medical terminology and details of chemo, operations, etc. she received.
My mom was diagnosed with stage IV metastatic rectal cancer in 2010 at age 48. I remember her bringing home the portable fanny pack-looking bag she strapped around her shoulder, and it made a buzzing sound every time the chemo went through the tube. I don't know the name of this chemo, but it made her hands extremely sensitive, black, and shriveled. She had to wear gloves because the slightest touch of an object would be too cold. Her hair started falling out, and she had a lot of nausea and vomiting. I'd be awaken in the middle of the night by the sounds of her moaning and choking on her own puke. Sometimes she would just sit there on the sofa and stare off into space, her bony face suddenly white and blank, and I'd get closer to check if she was still breathing. She also had radiation. During this time, my mom continued to work. She just wore her gloves to work, and hid the chemo bag under a big jacket. In September, I was starting my freshman year at college so I wasn't able to be home for all of her procedures. She had a operation done to remove the cancer from her liver, sigmoidoscopy, laparotomy, coloanal anstomosis, etc.
The one I remember most clearly was her ileostomy. Oct. 2010
My dad picked me up from school to visit my mom at the hospital, and I mentally prepared myself by imagining my mom asleep in bed in an eerily quiet ICU. I'm still being haunted by the scene I saw instead. She was propped up on a chair, with her oversized gown flailing around as she thrashed her arms in the air. My mom was shrieking in pain with tears pouring down her face, and I lost count of how many tubes she was entangled by. Her piercing screams were interrupted with sudden gasps for air, and then more agonizing shrieks. As for the ileostomy itself, she actually became allergic to the bag so she got a rash around the stoma. At work, there were were incidents when the bag got overfilled, snapped open, or poured down her pants when she couldn't make it to the restroom. She had the ileostomy reversal a couple months later. Apparently the ileostomy didn't do its job or something, becase she had to go back into the hospital to reopen the same hole for another ileostomy/ileostomy reversal.
My mom's next scan showed that the cancer had mestasized to her lungs. This was now Oct. 2012.
She had surgery to remove tumors from both lungs. She recovered quickly from the operation, despite having multiple scars where the surgeon sliced through her back and the side by her ribs. However, she had to restart chemo a week after she got out of the hospital. I remember this one being Irinotecan, and the hell began again. This chemo made her lose much more hair than the 1st chemo, and she was deciding whether to shave the rest of her head. Her face got very thin and skeletal, and all her bones were sticking out when I felt her body. She had extreme nausea, and could not even drink water for the chemo days. She went through a total of 22 rounds. This wasn't continuous; she began having low white blood cell counts so we needed Neupogen shots. Her doctor saw her side effects and diagnosed her with anorexia and depression, so that was great. Oct. 2013,
the scan results again showed cancer in the lungs, at the very spot the chemo was targeted. This time, they removed half of her left lung. The recovery for this lung operation was not so good. Her vocal chord got paralyzed during the procedure so she couldn't speak for a while. She had a lot of mucus and fluid built up in her lungs, making her get fatigued very easily with a lot of difficulty breathing. Up to this day, her voice is still not back to normal and she has to breathe a lot and gets tired if she talks too long.
Throughout all of this, my mom had the rectal issues I'm sure you are familiar with. Her bowel movements force her to stay in the restroom for 8-9 hours, sometimes throughout the whole night so that she could only attempt 1 hour of sleep before she gets up for work. I bring her dinner into the bathroom, and she has her meals on the toilet. The constant restroom use and pain resulted in an anal fissure. Although she altered her diet, some she starved herself so she can lessen the restroom time. No sleep, no food, and no rest (she continued to work these 4 years) made her very weak. There have also been other emergency situations at home where my mom suddenly has severe pain and needed the ER. There have been moments where she told me she wants to die, so that all of this can end. I haven't even mentioned the non-medical problems she had to deal with: I got disqualified of financial aid because of my mom's hospital bills, her "best friend" tried yanking off her wig in public, she was getting verbally abused at work, etc.
These are only snippets into the hell that was my mom's life for the past 4 years--her unbelievable battle cannot be fully portrayed by mere words. However, Oct. 2014
, her scan showed no signs of cancer, age 53. If you saw her on the street, you wouldn't be able to tell how much she had suffered. She couldn't make it to my high school graduation, but she was cheering at my college ceremony. I didn't really know who to tell, so I decided this was the most appropriate place to vent a little bit and share a little bit of my mom's battle. It has been so hard for my family, and the good news finally arrived. I remember forcing myself not to have too much hope because that can be the very thing that destroys you. But for anyone who actually read this whole thing (first of all thank you,geez I didn't realize it'd turn out this long haha), please stay strong. If I may also share the following things I've learned. Whether you are the patient, caregiver, friend, or family...strength is as powerful as hope. Mentality makes a huge difference, and perseverance can be revealed at the most unsuspecting times. The negative people in your life, which includes non-supportive family, are a waste of time. Nobody has the right to tell you anything unless they've walked a mile in your shoes. Cancer shoes are very big to fill. It's okay to get bitter, resentful, and frustrated at the life you now have. But it's also okay to have faith that you can overcome it. Maybe the problem isn't overcoming it, but just getting through it. And that's the hardest part, but you'd be surprised how much determination one person can have. Don't give up.