New Month, New Treatment Updates!

Karen's final days

Photo by Markus Spiske on Unsplash

I hope I didn’t scare you off with my last post about my Ostomy! If you didn’t read it, I totally understand. While it did have pics of my stoma (the part of my large intestine that sticks out of my abdomen), I tried to offset that with a very cute pic of a kitten and puppy. The TL;DR recap (or maybe the L should be replaced by G for gross?) is that I’ve named my stoma Karen and she’s been quite the annoyance. It’s like she’s been marching down to HR to file a trivial complaint daily. Especially these past few weeks as she has been prolapsing like crazy. This means that too much of her (i.e. several inches) has been sticking out of my body and makes me look like I’ve got a lumpy alien baby in my belly.

It not only makes me super self-conscious but it’s really affected my quality of life. It’s limiting my comfort and ability to do the things that I want to do. Outside of daily walks, I’ve barely worked out for the past 3 months. Regular household chores like sweeping the floors, laundry and gardening have to be broken up with frequent pauses to lay down and try to push Karen back in. It’s like she’s quiet-quitting on me.

Karen is definitely not doing more than necessary.

This has been such a frustrating experience and I feel like so much of my time has been wasted trying to coerce and bargain with Karen to go back in her hole. Sorry if that sounds gross but that’s literally what I’ve been spending about 2 hrs each day for the past 2 weeks doing. Yes, many times I lay there in utter amazement watching the natural expansion, contraction and change of color of my large intestine as it responds to blood flow and digestion. It’s truly wild and unreal. However, I’d rather keep binging episodes of Grey’s Anatomy than my own medical drama. This ostomy is the main thing that is making me feel “sick” and I’m ready to move beyond that.

If you’ve been following along I had my 10th chemo treatment on May 16th and was expected to complete 12 treatments before having surgery. In the meantime, I was trying to schedule a visit with my surgical oncologist to get a flexible sigmoidoscopy in order to assess the tumor site and plan for the surgery. At first request, I was told that she wanted to wait until after my last chemo before seeing me. Problem is that the only reason I’d be pausing chemo is to have this surgery. After explaining this and pushing to start the process now, the nursing staff told me they’d have to check with my doctor and that they’d call me back. Even my medical oncologist didn’t think that the surgical oncologist would budge on this which left me feeling a bit defeated.

This Just In…

Well, last week I got a call from my surgical oncologist’s office saying that they wanted to proceed with surgery…ASAP! Not gonna lie, I started to tear up when I heard the news. I was fully expecting them to tell me that I’d have to wait until June just to get an appointment for the surgical consult and instead I got a date for surgery! After reviewing my most recent scans, seeing how well I’ve responded to treatment, consulting with my medical oncologist and hearing my complaints that the prolapse is impacting my quality of life, the surgical oncologist felt that this was a great time to have the surgery.

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So what does this all mean?

Details please…

Surgery is next week, Tuesday June 6th at 7:30am. (OMG!)

The surgery I’m scheduled for is a two-fer: Robotic Rectosigmoid Resection and a Colostomy Takedown. 

• Robotic Rectosigmoid Resection is a minimally invasive surgery where my surgeon will go in (via robot arms) through small incisions in the abdomen, remove the section of the colon along with the surrounding lymph nodes where the primary tumor is located, and then reconnect the remaining parts of my colon. 

• Colostomy Takedown is to undo the loop colostomy, reconnect my large intestine and close the opening in my abdomen so that I can poo like a normal person again. Yep, this means I get to say goodbye to Karen! So long chica. 

• Additionally, my surgeon will inspect my other organs, especially my liver and the lining of my stomach. While she’s been impressed with how the lesions in my liver have been reducing in size (more on that below), she wants to get a visual of the lesions to help us figure out potential next steps for treating my liver. 

At my surgical consult appointment this past Wednesday, everything was explained in such detail, from the logistics of the pre-surgery bowel prep (fun!), the day-of surgery details, the post-op recovery, to the worst case scenarios (upon my request). The Nurse Practitioner and my Surgical Oncologist answered all our questions with such confidence and they really helped to ease my fears. I feel so optimistic and hopeful that I’ll get more of my active life back post surgery and feel so grateful that I have a medical team that I trust. 

Also, as part of my pre-surgery prep, I had new CT scans done last Friday. And again, good news! 

"Improvement in size of multiple liver metastases consistent with favorable treatment response".

More specifically, a lesion on my right hepatic lobe is down to 1.6 cm. It was 2.2 cm in April, 3.5 cm in Feb and started at 4.2 cm in December. Measurable progress continues!!!

It’s still a little hard for me to believe that this surgery is happening in less than a week. Before I received this news, I had intended to write about some of the negative feelings, emotions and side effects that I’ve experienced over the past 5 months. I feel like I’ve mostly been sharing good news (which I’m happy about there even being good news!) and I don’t want to mislead anyone into thinking that it’s all been easy. It truly has been a roller coaster ride. Sometimes I’m scared to get on the ride and feel like the attendant didn’t really check my seatbelt. Other times, like now, I’m pushing my way to be first in line to ride in the front seat. Look ma, no hands.

Photo by Itai Aarons on Unsplash

Thanks as always for reading until the end. Please send me all the good vibes, well wishes, prayers and healing thoughts on Tuesday morning. Cute and funny pics/videos of animals are always welcome but considering it’s abdominal surgery, try not to make me laugh too hard. 🥹

In love and gratitude,

Jess