My Full Cancer Story

My Cancer Story

I'd been having some odd symptoms for awhile but they were easily explainable.  Honestly looking back I should have gone to the doctor sooner but again, things felt explainable and sometimes weren’t consistent and my fear of what could be also kept me away. I wish I could have known. 

But I thought maybe it was hemorrhoids or food allergies or sensitivities. Maybe it was Celiac or IBD or my IBS had gotten worse?? 

There was no way at age 35-36 could it be anything else right? Finally after I had been tested for everything else and symptoms worsened, I was sent for an “urgent” colonoscopy, after a Zoom Dr. appointment because it was April 2020 and things had just shut down for Covid. 

My colonoscopy revealed several polyps. The small ones were removed during the procedure and then two were biopsied. One was tattooed so they could hopefully locate it later. The other was so large and low, they could not remove it during the colonoscopy . Because of COVID I was by myself hearing all of this, and was still so out of it from the meds that I could not quite grasp what they were saying. I remember hearing the words “looks angry" and “could be cancer" and “surgery at the hospital not the surgery center”.

I walked out to the car where Trevor and the boys were waiting and I began sobbing. I don't think I stopped crying for 3 days. A week or so later they called to let me know the biopsy said "polyps were pre-cancer". PHEW! Not cancer. I'd have surgery within the next few weeks to remove the two polyps and be on my way. I remember celebrating with people that it wasn’t cancer. 

I was to have a laparoscopic surgery (two tiny incisions) and I would be in the hospital for maybe 3 days. Quick and easy. The surgery was to take about 45 minutes. I was incredibly anxious and felt something was going to go wrong. My surgery was delayed by several hours and the longer I waited to more anxious I got. They finally brought me in some Ativan. I couldn’t remember this part of my story for about a year after. I remembered getting to the hospital but after that I only remembered waking up. I hate that my gut feeling was right. 

I woke up yelling and crying. 

I woke up to nurses saying

"They had to cut you open" and “I’m so sorry.” I was awake and they had not yet put the epidural in. I was in so much pain and confusion. 

I found out later my laparoscopic low anterior colectomy was converted to a fully open abdominal low anterior colectomy and a diagnostic sigmoidoscopy which meant they had to cut me wide open. The 45 min surgery turned into an over 3 hours surgery and Trevor was not updated during this time. He just sat there waiting and wondering, which still makes my heart ache when I think about it. 

My surgeon could not locate the tattooed polyp and had to remove the lower polyp in “piecemeal” fashion. He went back to the site twice to remove more and I was told recently that is most likely what saved my life. He was able to reattach things in such a way that I miraculously didn’t need a colostomy bag. 

I was wheeled into a hospital room where I'd stay ALONE (thanks Covid) for a week. I was hooked up to an epidural for the first 5 days of my stay and a catheter along with heart monitors and oxygen at times.  I had no advocate and they would not update my husband. Once I had the catheter removed I'd have to ring the nurses every time I needed to go to the bathroom because of everything I was hooked up to. Sometimes I'd lie there for 45 minutes crying and yelling while I waited for someone to come even after paging multiple times. I had massive panic attacks, I had extremely low BP and almost passed out several times when PT came to help me practice standing up and was completely alone. I can’t even type some of the other things that occurred. 

It was the most traumatic week of my life and even after all I've been through since, it remains the hardest and most difficult thing I experienced. I didn’t know how large my surgery incision was until 6 days later when I left the hospital. 

I looked like Frankenstein. So many staples, 20 something? Uneven. Awful. 

I left the hospital not knowing what the pathology report said. I went home and could not sleep or eat. I cried a LOT. I didn’t want to talk to or see anyone.

It wouldn't be until my appt 14 days later to get the staples removed where I would find out I had cancer.

My surgeon had terrible bedside manner  and was texting people and joking in between telling me I had cancer. Because one polyp was up higher in my sigmoid colon that meant colon cancer. Because the large one was so low in my colon, that was considered rectal cancer. 

Two separate cancers. Two separate treatment plans. Two different oncologists. 

Rectal cancer would require radiation and oral chemo and because of the lymph node involvement that would require chemotherapy. 

Amazingly they let Trevor come in for my first appointment with my hematology oncologist, but this would be the only appointment he'd ever be able to come with me to because of Covid. 

I was staged at Stage 3A Colon Cancer and “at least” Stage 3B Rectal Cancer. 

I would have 25 rounds of pelvic radiation along with oral chemotherapy (5 weeks, 5 days a week). Then I'd have a small break before getting my port surgically placed and beginning 12 rounds of FOLFOX chemotherapy which would consist of a day of chemo infusion where I'd leave with a chemo pump and wear that for two days before having it removed (56 hours of chemo every other week for 6 months) I left this initial appointment feeling better knowing that I had a plan but so incredibly scared. I did not feel like fighting. I waited for quite awhile before sharing this news. 

I was told I most likely wouldn't lose my hair with the type of chemo I was going to be on, but that a shorter haircut would help if I did and to expect at least thinning. I felt like I needed a “screw you cancer haircut” so I went to my longtime trusted stylist with a Pinterest picture on my phone and said - do it. So off came my long locks. 

But something else happened. I left feeling so BA. I left feeling a fight stir up in me. This haircut wasn't just a physical transformation- it jump started my fight and I was ready. 

Towards the end of my treatment I felt so awful that I could hardly leave my bed. This, coupled with the increased risk from chemo led to me developing a significant blood clot in me femoral vein. This was so painful and scary and I’m so thankful I went in when I did. I was placed on blood thinners and would stay on those for many months. 

I was declared in remission on 3/4/2021.

The toxicity of my chemotherapy treatment left me with significant CIPN (chemo induced peripheral neuropathy). This meant that my hands as well as my feet and legs were numb. It’s hard to describe but think of the worst case of having your foot fall asleep without every waking up plus shocks zinging through and wearing 15 pairs of fuzzy socks over the top. Because of this I tripped and fell and wound up with a concussion and broken nose (along with an ambulance ride to the ER). I’d end up needing surgery on my broken nose and still have a scar on my lip both inside and outside, thankfully only I can see! 

I still deal with CIPN, my hands are much better, but my feet and legs are in bad shape. I was told because of the severity and amount of time that’s passed that this is here to stay. 

Since I’m a fall/trip hazard I don’t run anymore and have to be selective about my shoe choices and very conscience even when walking. I’ve adapted a lot so I feel more confident now even if things haven’t improved. 

I was put into menopause at age 38.

I have LARS (low anterior resection syndrome) and if you want to look that up you’re welcome to 🙂

I’m more of a homebody now, my ambivert ways have swung more to the introverted side and I deal with medical trauma and anxiety. 

I’m a vegetarian, I don't smoke or drink alcohol, I was an athlete and had no family history of colon cancer.  

Basically I had none of the risk factors they tell you about. 

So if you’re over age 45, you can get a colonoscopy now.

If you’re under age 45 but there is family history or you have symptoms like:

• A persistent change in your bowel habits, including diarrhea or constipation or a change in the consistency of your stool
• Rectal bleeding or blood in your stool
• Persistent abdominal discomfort, such as cramps, gas or pain
• A feeling that your bowel doesn't empty completely
• Weakness or fatigue or 
• Unexplained weight loss

Call and ask to be referred for a colonoscopy.

Many people with colon cancer experience no symptoms in the early stages of the disease. When symptoms appear, they'll likely vary, depending on the cancer's size and location in your large intestine.

This is why screening is important. 

I share my story because I hope perhaps it will prompt someone to get screened and maybe it just might save someone’s life.