Cancer catch-up post

Yes it's been a long time since I've posted. Partially this is due to me being a procrastinator. However, on a deeper level I've been avoiding a public revisiting of some of the trauma I've been through these last few months. It's been a lot to wrap my head around and my head has needed to heal as much as my body.

Let me start out by reiterating that "cancer is not for pussies". Even if everything goes as planned (not all went as planned for me) I'd imagine it would still be difficult. The reality is of being diagnosed is IMMEDIATELY followed by a need to get rid of the disease as quickly and thoroughly as possible. This involves taking a toll on your otherwise "healthy" body. Of course in my case having CF makes this infinitely more risky.


STOPPED UP

The first few weeks of chemo & radiation "chemorad" were a walk in the park. I did start having some cramping diarrhea during week two. This is where things started to get a bit hairy. Before going any further, let me preface my discussion by saying this is not an attempt to lay blame for what happened. Rather it is a way of explaining and somehow coping with a rough situation.

In the third week both the oncology and radiation departments put me on various drugs to help with the diarrhea. I really didn't think much about it except being happy not to be having the runs anymore. This happiness mixed with a genuine lack of experience with chemorad side effects caused me to not be concerned that I wasn't pooping enough. I also somehow incorrectly assumed that both departments knew what the other was prescribing or that I had let them know at some point. By the end of week four I was really feeling crappy & having pain so chemo was discontinued. Radiation was also stopped for a day. An x-ray was taken of my abdomen at that point to rule out any issues. No one followed up with me to mention any concerns about it. So to deal with the pain I started on pain meds as needed.

Pain meds also slow down your GI system. Even though I'm VERY pain tolerant my need for pain meds increased steadily during week five. My poop decreased to almost nothing. The fifth weekend was a rollercoaster of trying to poop and using every intervention possible to get it done. Enemas, laxatives, etc etc. After another day I went cold turkey on the pain meds hoping to help the situation. By Tuesday morning (week 6) I was pooping blood clots and my belly was so distended I looked pregnant.

My oncologist admitted me to the hospital and more laxatives etc were tried. A second abdominal x-ray was taken. After a day with no results I asked to be put back on pain meds. At that point I'd lost the ability to mentally deal with the pain anymore. I was told my x-ray showed impaction of feces causing a blockage. My transplant physician visited and pulled up my x-rays on screen. I then learned that I'd had marked constipation starting way back with my x-ray taken in week four. My more recent x-ray showed not one but two blockages (high & low with a massive amount of gas inbetween). Unbeknownst to me I had been getting more & more "full of shit" for a long time. In hindsight I think this was caused by overmedication and my lack of experience with the side effects. I know CF so well and am very in tune with my body relative to that disease. Cancer is a different story.

Early the third morning of my stay I lay in bed not able to sleep. Then I remembered my yoga!!! In bed I started doing some gentle pelvic rotations to try to loosen things up. And IT WORKED sort of. A while later a long and way overdue fart passed. WOO HOO! Later that morning my mom was drinking coffee. I asked for a several sips remembering that coffee always makes me want to poop. A few hours later it finally happened....I POOPED!!!! Once things started it kept literally flowing for a few days. I've never been so happy to poop. The next day I was discharged.

BE CAREFUL WHAT YOU WISH FOR

By the weekend things slowed down to more normal. Of course then I overanalyzed every poop or lack thereof. Next Monday the radiation doctor told me to take several laxatives daily to keep things moving. I was happy to oblige as a way to avoid being impacted again. But sometimes good intentions produce bad results. After a blood draw that Thursday my potassium levels came back dangerously low. Once again back to the hospital :( Having really low potassium can make your heart act irregularly or just plain stop. So they monitored it overnight and administered IV potassium. The following day blood work was OK and it was back home again.

A week later radiation finally ended. My new mission was to get strong and get fat. Due to all the issues I lost ten pounds that I didn't need to lose in the first place.

REWARD FOR ALL THE HARD WORK

This Wednesday was my follow-up rectal ultrasound. The purpose was to see how much the tumor had shrunk after the chemorad in preparation for surgery. It was a real gift to hear the results. Not only did my tumor shrink; it was no longer a detectable mass on the ultrasound. The visual view via scope only showed a 1.5cm ulcerated flat area but no tumor. Such AMAZING news after such a harrowing experience.

Now my focus is continue eating & exercising until surgery. Based on the ultrasound results I'm very hopeful that a colostomy will not be needed. Until then it feels like a huge weight has been lifted from me. And for that I'm so so grateful.

I'd like to close by thanking all of you for all the support, prayers, visits, calls, care packages etc. I'm so grateful to have an abundance of wonderful people in my life. Life is good :)

Love,
Steph