I created a space to give updates as well as give some background as many have asked what has happened up to this point, what led up to my recent diagnosis, and what the plan of action is. Of course I don’t mind answering questions, but this will be an easy way to keep several people updated at once. We’ve already had an overwhelming support system form around us and we are incredibly humbled and grateful.
And fair warning- you all know I’m a nurse and that I’m not afraid of details. If I’ve learned anything from my first health crisis with HELLP syndrome- it’s that knowledge is power. So- if sharing the embarrassing details of my journey encourages someone else to get screened or checked, then it’s a win. Who knows, it could even save a life!
In the third trimester of my recent pregnancy, I (like so many others) developed hemorrhoids. These were nothing that slowed me down or caused much pain- they were just… there. No big deal. As my pregnancy neared the end, I started to have decreased appetite and upset stomach. Still all very normal “preggo probs”. I was just so thrilled that I was full term without any signs of preeclampsia or HELLP in sight- I soared right up to my beautiful scheduled delivery at 39 weeks. Evelyn Alice joined us that morning with no complications at a whopping 7 pounds! My first words were “she’s huge” ???? Such a big difference from my little 2 pound peanut 3 years earlier. Recovering from my C-Section was uneventful with no concerns. My OB, Dr. Steinbis, and I chatted about my hemorrhoids briefly at my 6 week postpartum visit and decided to keep an eye on them as they hadn’t changed and weren’t causing issues. It was still pretty soon after pregnancy to expect them to disappear and I was more focused on panicking that she was moving away- tears! The weeks moved along and I went back to work. I was noticing a little more mucus in my stool with some blood and the hemorrhoids hadn’t budged so I made an appointment with my primary doctor. She did an exam and we discussed a plan. They weren’t firm or sclerosed and not causing much discomfort so we decided to increase my fiber and water intake, use over the counter creams, and follow up in 6 weeks when my yearly physical was due. Throughout those 6 weeks I noticed more mucus and blood and even started experiencing some urgency to get to the bathroom on time- all things I just attributed to the hemorrhoids causing pressure. I was also noticing some pain over in the center of my right buttock, assuming it was nerve pain from the hemorrhoids. I began to wonder if I had some larger internal hemorrhoids causing problems so I scheduled my yearly physical with the intent of following up. At this visit I had a normal physical exam with all normal labs – just the increased GI symptoms were the only thing worth mentioning. She quickly suggested it was time to “get those taken care of- it’s a quick procedure” to remove persistent hemorrhoids. She told me she’d enter a referral to colorectal surgery. (ha- what? no way am I doing that… I know all of them and all their teams) I smiled politely knowing I was going to ignore the referral and left. Surely they’d resolve soon, if I was better about my diet and water intake- they weren’t really that much of a bother.
That weekend my bestie Katie was in town- we sat chatting and watching a movie as I was complaining to her about my little annoyances. She quickly said, “oh suck it up and go- they do this all the time”. Ugh, she was right. That next week, after I pondered about which one I’d like to see (I choose the one I knew the least, ha), I snuck over to his nurse’s cube (which is in my office) to tell her I needed to see her doc. She quickly agreed to throw me on their schedule for their next clinic day and assured me they see this after pregnancy all the time. That Tuesday, September 27th- I went into his office for a consult. I fit it in between meetings thinking it shouldn’t take long. As I started giving him the history, he began asking more questions- specifically about the urgency and the mucus. As he was digging deeper (uh figuratively at this point… that comes later) I could tell his mind was turning and this wasn’t a normal postpartum hemorrhoids discussion at this point. He did an exam there in the room- I sat back up- he took a breath – and said “I actually feel a mass in your rectum”. My heart sank- what? a what? He quickly got me set up in the procedure room for a more thorough exam (yes it’s as awful as you imagine) to try and get a better look. So this is when my friend I work with had to give me two enemas and I had to sit and wait for the next exams- yikes. At this point I started furiously texting Camden (my cell service isn’t great in the middle of the building so I couldn’t call). “Baby, my appointment isn’t going as planned” “He found a mass- I have no idea what he’s thinking but I can tell he’s concerned” “They’re making me do more tests, this is awful” “Can you please come up here? I afraid he’s going to have something awful to say”
After doing a anascope and a rigid proctoscope (think: on your knees, way up on a table, with things going where the sun doesn’t shine- not fun), Camden was able to join us back in the consult room for the discussion. You guys- I have seen this talk hundreds. of. times. The changed tone of voice, the clasped hands, the deep breaths, the pursed lips… I knew what was coming. He explained that he saw a friable (crumbly), firm, large mass about 5 cm up… the way it looked and the way its was acting- he was able to say he didn’t see a scenario where this was not a cancer. Obviously we would need pathology to confirm the type, but he was certain this was not benign. I’m very thankful for his honesty right in the moment. Obviously our minds were numb and we were horrified- we quickly reviewed what needed to be scheudled next, the nurse assured she would work on it and call me- I wanted out of there. I told a few people I needed to leave, and Camden and I drove off. That afternoon is a huge blur but I’m pretty sure we just went home, sat on the floor, and cried. Maybe when I’m further away from it I’ll be able to explain the feeling better. Hit by a truck, world turned upside down, floor ripped from below you- those all seem close but just not quite bad enough.
The next step was a colonoscopy with biopsies on Thursday 9/29 (shout out to my team for getting it scheduled so super fast! and with the best doc), then staging scans on Monday (CT of the chest, abdomen, pelvis and MRI of the pelvis). Wednesday night was rough doing a bowel prep for the first time- I threw up a lot and needed to have extra medication to get clear- ugh. Thursday itself wasn’t bad at all… the GI team and KU is amazing and I was comfortable the whole time. The procedure went well – they saw the mass but no other lesions along my GI tract (thank God! I was afraid it was some sort of “tip of the iceberg” situation where there were more tumors higher up) and they said it seemed localized to the area. They described it as “involving 3/4 of the circumference of the rectum”- oof. – but not invading other structures. The GI doctor was able to get several pictures and biopsies. She agreed that this was most certainly a cancer and she also couldn’t think of any alternate scenarios. I really did enjoy all the staff there- they were all very informative and comforting (I suppose part of that could be the profofol- I did decide to cry about my missing high school cat when I woke up from anesthesia, ha… love you Gracie!). Recovery from that was a breeze- nice nap that afternoon- call that evening confirming the diagnosis (ugh- but like I said- because of the surgeon’s honesty I was preparted to hear it) Rectal Adenocarincoma- then my next feat was to get through the weekend before scans.
That weekend we thankfully had tickets to the Royals last home game! It was an amazing day full of our sweet kids and beautiful distraction. That night was a different story- I think that’s when it all hit me. I was getting scans the next morning and I was terrified it was everywhere. AND let me tell you- I’m a smart person, BUT- you can manifest ANY fake symptom when faced with this. I was having tightness in my chest, stomach pain, headache, you name it! The uncertainty is mind numbing. Thankfully, Camden was with me to distract me with his sweet humor and protection throughout that Monday as I had all my scans. Laying in those tubes has got to be the most demoralizing and vulnerable feeling I’ve ever felt. I was placed in the MRI machine and the first song that came on was “Here Comes the Sun”- my new theme song, motto, motivation, obsession… whatever you call it. The feeling that came over me when I listened to the words is indescribable! I knew I wasn’t alone. There’s only one other time in my life I felt such clarity and that was in high school at a TEC retreat during meditation (another story for another time). THEN just when I thought He was done sending me my message that “it’s alright” – the second song that played as I laid there was our wedding song- “Stand By Me”. Of course my mind went directly to my husband who had already been my rock throughout this horrible week. Lesson learned- the Sun will come, all will be alright- and there’s no reason to be afraid, as long as my husband is by me. I felt so encouraged, and the day got even better. I rushed back to work at the Cancer Center to find my friend (the surgeon’s nurse) – my CT and MRI were already back- NO EVIDENCE OF METASTASIS Amen! What this means is the cancer was not found anywhere else in my body- obviously my biggest fear at that point was that I was metastatic and without many treatment options. They did notice some enlarged lymph nodes embedded in the fat just around the tumor- so with those, and the size of my tumor itself- that makes me stage 3.
The rest of my time up until now has been filled with choosing the rest of my medical team and deciding on a plan. I already had my surgeon who found the tumor. I have also met with radiation oncology and medical oncology. Luckily I know all the right people and have been able to hand pick my dream team! Listen- yes it is awful to have the disease you’ve spent your entire career trying to treat turn on you – but there have been some major perks to being a “VIP”- our Cancer Center family has always taken care of our own and I am so thankful for everyone who has been working like crazy to keep me in line- both inpatient and outpatient families.
The general plan that was decided (I’ll go into more detail about treatment in a later post for those who are interested) is this:
- Oral Chemo/Radiation for 5.5 weeks (every day except weekends)
- 6 week break
- surgery (total resection with permanent colostomy)
- 6 week break
- 4 more months of oral + IV chemo
In order to get started as soon as possible- I have to get “mapped” for radiation. This is when they do several scans and calculations based on my tumor and anatomy to plan out their approach for radiation therapy and find the perfect position for me to be in each visit. There were just a few minor things in the way before we could schedule that mapping… my ovaries! NO- I am not preserving my ovaries for future fertility reasons- I am preserving them to avoid going into immediate menopause which could lead to a host of other issues throughout treatment and long term (think: osteoporosis, even more increased breast cancer risk, horrible hot flashes, etc.)- so enter in gynecology oncology. The surgeon saw me quickly when learning we had to do this fast and got me on the schedule for her next surgery day. I had the procedure on Thursday and am still recovering. They were thankfully able to complete the oophoropexy (gesundheit) laparoscopically – a concern because of my significant scar tissue from my previous emergency c-section… and all was succesful! The procedure itself only has a 50% chance of really avoiding menopause- but at least we gave it a try! I’ve really just been sore and bloated- the procedure wasn’t awful (and I didn’t cry about any cats this time)… and I’ve had some cute nurses around here at home taking care of me (plus amazing friends bringing loads of food and treats over).
Anyways- so that’s where we are. Still many unknowns- anxious to get started- keeping my mind out of the dark and looking for that sun! Thanks for the support and prayers- I’ll keep updating!
This post originally appeared on Here Comes the Sun. It is republished with permission.