|Hello all! My name is Jennifer & I was diagnosed with stage 3a rectal cancer on June 1, 2017. I was 29 years old.
To tell you my story, I suppose I have to go waaay back to when I first started noticing symptoms. Get comfortable because this is a short novel! This is also not for the faint of heart - you have been warned! It began in November of 2015. I was experiencing abdominal cramps that didn't seem to want to go away. They weren't altogether painful, but they were bothersome enough that all I wanted to do was lay in bed all day, in the fetal position, drained of energy.
I figured maybe my diet was to blame & so I tried eating less & healthier. After a few weeks, there was no improvement. I noticed I had a relatively light period that month, but that seemed normal considering I changed up my diet so drastically. My husband urged me to call my doctor, which I did. Being a busy time of year, I wouldn't be able to get in until almost a month later.
In the meantime, I noticed I had missed a period in December. I took a home pregnancy test & it was positive. So that's why I felt like crap! I met with my doctor anyway, so happy that I had figured out what was wrong. She confirmed I was indeed pregnant.
During my pregnancy, my symptoms slowly got worse. I was in more pain, having difficulty having bowel movements, and started noticing blood after a bowel movement. Naively, I assumed this was all apart of my pregnancy this time around. Granted, I never had these symptoms with my first, but I shrugged it off as "every pregnancy is different" & "this will all go away after I have the baby." Ergo, I never said anything to my ob/gyn.
I welcomed my baby girl on July 12, 2016. After having her, my symptoms only got worse. There was far more, excruciating pain & a lot more bleeding. I began to notice my stool was narrower & I was losing a lot of weight without trying (altogether I dropped 85 pounds!). I ignored this for almost 6 months, figuring maybe it's hemorrhoids, and I needed to give myself time for them to clear up.
A day before new year's eve, 2016, I got the scare of my life. I was in the middle of making a bottle when I felt the sudden urge "to go." I ran to the bathroom & felt a release. I feared I had pooped myself! But I was dead wrong. It was nothing but blood. I sat on the toilet & it was as if someone turned on a faucet - of blood! Despite all this blood, I refused to go to the hospital (I HATE hospitals/doc offices). I did, however, call my doctor after the new year, when the office opened up again.
Again, naively, I said the reason for needing to be seen was hemorrhoids. I had never had them before but I was just recently pregnant & I didn't know what else could be going on. When I explained my symptoms to my doc she kept saying, "That could be hemorrhoids, that could be hemorrhoids." She did an exam & claimed she could see "two small hemorrhoids." The only good thing she did for me that day was refer me to a general surgeon for "hemorrhoid removal."
Now, I live in a small, rural town in NE Oregon. Efficiency is not its strong suit. I waited a month to even make an appointment with the general surgeon because my doctor's office lost my referral & I had to keep calling them!
When I was finally seen by the general surgeon, he said he didn't even need to examine me, he knew my symptoms were the cause of something more serious than hemorrhoids. He referred me to a GI specialist in Washington (thanks small town), which was a little over a two hour drive away.
The GI specialist performed a colonoscopy on May 30, 2017. I came out of anesthesia somewhat relieved that this whole nightmare could soon be behind me (pun not intended). Then he came into my room & all I remember hearing was "large suspicious mass." A couple days later, on June 1, I got the call on the biopsy results. It was positive for cancer.
This began a long process, covering across the state of Oregon & up to Washington to visit doctors, specialist, & to have several more colonoscopies & sigmoidoscopies to see if the mass could be removed at all. The thought was that perhaps it was an overgrown polyp. But better biopsy results from a sigmoidoscopy confirmed it was indeed cancer.
I started chemotherapy & pelvic radiation in September of 2017 in Walla Walla. Every day, five days a week, I travelled back & forth from my home to the treatment center, nearly a 5 hour round trip. I had to withdraw from college (I was taking classes online, majoring in psychology) because the pain was so intense & I spent all my time travelling back & forth from treatments. Radiation put me into menopause & squashed any chance of having another baby. To this day, it is still a bitter pill to swallow. I did not realize just how extensive the "collateral damage" would be. I had met with an ob/gyn oncologist to see about moving my ovaries out of the way before treatment started but she made it sound so pointless, so I decided against it.
Chemo drained me & made the pain that much worse. I spent my time at home howling in pain & being bedridden. A fun side effect of the chemo was that it gave me heart attack like symptoms. This is because I have an arrhythmia & my oncologist explained that chemo tends to aggravate otherwise dormant conditions such as this. As if dealing with cancer wasn't enough!
Radiation made going to the bathroom, even urinating, so much more painful. There really are no words to express how much worse the pain got when I already felt it was so bad to begin with. Every trip to the bathroom had me screaming, crying, cursing, pleading with God to just LET ME DIE because death would be far less painful than what I was going through. My poor husband & kids no doubt suffer a bit of PTSD on account of my wailings!
Radiation lasted 5 weeks & I had my last round on October 23, 2017. Chemo was another story. I was originally hooked up to a portable pump that delivered 5FU 24/7. I came in once a week to have the pump refilled. After about 6 weeks of that, my oncologist tried switching me to oxiliplatin. That turned out to be too much for me - more pain & a fainting spell! So oral chemo was prescribed & I was on that for nearly 5 months, until my first surgery in April.
My surgeon was out in Portland, so anytime I saw him it was a solid 4.5 hour drive, one way. But my surgeon was well worth it! I had my LAR surgery on April 24, 2018. I had my entire rectum & the top 3/4th of my anus removed. The remaining end of my colon was crafted into a "colon J pouch," or as I like to call it, a faux rectum. It's job is to hold waste until it's time to go to the bathroom. It was then sutured to the remaining part of my anus. While I healed, I was given a nifty (not really) ileostomy bag.
The bag was not fun. There were challenges to getting used to changing the thing. In the first three weeks after my surgery, I dealt with so many leaks, I felt like I was going to lose my mind! I met with several ostomy nurses & eventually learned how to get my bags on & to stay put. I had my bag for a total of 6.5 months. During at least half of this time, there was a spot that seemed to not heal correctly around my stoma, like a suture popped. It was an incredibly sharp pain! It would leak a bit there, but didn't seem to mess up the overall function of my bag until the last month that I had it. My surgeon didn't seem concerned, stating it occasionally happens & isn't really a problem unless it's causing problems with the functionality of the bag. By the time I was having problems with it, it was so close to my reversal surgery, I just dealt with it as best I could.
I had more chemo, this time the oxiliplatin with 5FU. It was far more tolerable this time being that I wasn't suffering the effects of radiation at the same time. However, to this day, I still suffer consequences of radiation. I am post menopausal, I will be starting hormone replacement therapy soon, my uterus/vagina have shrunk, I have no libido, and sex is painful. Unfortunately, this seems to be all apart of my "new normal." I'm hoping with time, and maybe the right meds, things will get a pinch better.
I also suffer permanent damage from the chemo. I have neuropathy in my hands & from the knees down, making coordination, walking, balance, or performing any fine motor skill difficult. I still suffer "chemo brain" & have trouble recollecting things.
I had my reversal surgery on November 6, 2018, where my ileostomy was "taken down." Basically, my guts were reconnected & I could start pooping with my butt again. Things have been challenging, to say the least. It is amazing how much toilet paper & wipes I go through! There was a day I went through 4 rolls & at least one pack of wipes! If I'm not going to the bathroom multiple times a day, I'm wiping until my arm goes numb! This obviously leads to rawness & pain. I also average about 2-3 accidents a week & so I have been living in Depends 24/7 since my reversal surgery.
Despite ALL this, I consider myself lucky. I am still alive! I have my butt back (despite it being a pain in the...well...you know what!) I recently celebrated my 31st birthday in January. Cancer has taught me to be patient, to trust in the process, and to always look on the bright side. If there's anything I hope readers take away from my story, it is to not let cancer dim your spirit. Persevere. You are a true warrior and you have a battle to win!