I’ve been procrastinating about writing this post. Mostly because I’m not sure what I want to be writing about…there are so many thoughts that float around my head about dealing with cancer, but then I also need to just do the generic update information. So at this point I guess that’s where I’ll start for now.
It has been an interesting start to 2019. Followed my trip to Australia with treatment 2 days after we landed back in the USA. Surprisingly that was the best thing for jet lag as I just got to sleep the whole time. Win!
However following that treatment I was informed that my Doctor, whom I really like, was leaving MSK and I was assigned another Doctor. Blow number one.
Secondly, the new Dr primarily works out of the Montvale location so it was in my best interests to switch centers and so a whole new group of nurses. Not a bad thing, but it’s not the same as going to Basking Ridge where I know the nurses and they all know me.
And then the kicker…my CEA is starting to rise. On January 9 it was 14.1. It dropped to 11.1 on January 24 and since then has risen to 11.2 and after last weeks treatment, 12.3. Not the trend I wanted to see. The number isn’t terrible. But what it likely implies is.
This rise does not bode well for the medication still working in shrinking tumors. Urgh. So I’m scheduled for treatment on the 6th March and then will scan again on the 12th March.
I am scheduled for a CT scan but have a call in to the Doctor to see if I can change it to an MRI or a PET CT scan so I can see what is actually happening in my colon as well as my liver and lungs. As it is we have never gotten a complete picture of my colon as the tumor was too large to get the scope through during both colonoscopies.
Anyhow, I have to say I did not take the increased CEA news well. After a dreary day at treatment (too many new things happening there) and the increase, I kind of freaked out a bit. I was depressed for sure. I am unsure of what my next treatment options are, and honestly it was the first time that the dreaded ‘5 year survival rate’ actually felt like more of a reality. I’ve tried very hard to stay strong, and this just woke me up and crushed me. It was a bad couple of days.
But, we charge on.
I’ve been really positive about what this drug may do for me, specifically for radiation and hopefully surgery (the ultimate happy goal!) But until I scan I just have to not freak out too much. I keep feeling like these tumors are slow growing which is great but I’m worried about what my next options are.
There was talk of radiation with my previous Dr, so perhaps that will be on the table after the scan. Tumors need to stay less than 2cm though so whilst I was basically there at my scan in December we have no idea if they will still be there in March.
Not all sunshine and rainbows unfortunately. But I have my head screwed back on tightly and I’m ready to keep trudging forward. I’m still skiing, I joined a triathlon training swim team which I’m super excited about, and I have had so many people reaching out to see how I’m doing and if there is another update which makes my heart swell xxx. I’m lucky to have such amazing friends.
Until next time, keep your fingers crossed for me and don’t forget to wear blue on Friday March 1st for Colorectal Cancer Awareness Day! ✔️UR :
Ali xxx
Tougher than this 