But aren’t they all?  This one really came out of the blue for me.  I think it’s likely because it wasn’t discovered on my regular CT scan, and it wasn’t in a location that has ever been active before.  It was so unexpected for me that I don’t think I really was able to process that it was a recurrence.  I had been doing so well on the maintenance Avastin for two years so where did this come from?

The Start Of Recurrence #???

The way I count my recurrences this would be number six.  I count recurrences by – “Do I have to figure out treatment for this?”

In past recurrences, I’ve had a strange pain or feeling in my pelvis.  Not this time.  I started to have some stomach issues.  No need to share the details but one of the first things that started happening was that I had trouble eating.  I was full quickly if I could even eat at all.  I was at a friend’s birthday dinner, and I couldn’t even take a bite of the delicious meal in front of me.  In addition to the eating issues, I was having issues going to the bathroom.  I’ll maturely say, “number 2”. These details you don’t need but in a nutshell, I could either not go to the bathroom, which isn’t uncommon for me, or my need to use the bathroom was EMERGENT.

After a few weeks of this, I decided it was probably time I deal with it but had zero thoughts of a recurrence.  The Avastin had been working so well so it wasn’t a consideration.  I thought I was dehydrated.  I went to my Primary Care Doctor who suggested a colonoscopy even though I had had a great one less than a year before.  So great that I didn’t need to have another for 10 years.

Waking Up To “Not Great News”

Within a week I was having a colonoscopy.  When I was waking up the first thing I heard was “should he be in here because it’s not great news”.  Dread.  I knew what they were going to tell me, so I said “Yes, he needs to be in here”.  The “he” they were referring to is my boyfriend, Rob.  So, in he came, and they told me there was a blockage and that they couldn’t get the scope around the blockage to see anything, and I needed to leave there and go to the hospital.

Off To The Hospital

That escalated quickly.  That was a Monday.  The plan was to have surgery which I did that Friday.  I don’t remember why I waited in the hospital for the week except that I had a million tests.  Also, they must have had a surplus of broth and yellow jello they needed someone to consume because that’s all I was allowed to eat.  I was starving.  So hungry but clear liquids only.  I didn’t feel bad but the week was a bit of a blur.

I was alone for the week.  Because of COVID restrictions, Rob was not allowed to be with me which was difficult for both of us.  Thankfully we had face time and a very nice nurse who let him come in at 5:45 am on the day of my surgery so he was there before I went into surgery. It was scary.

Surgery Plan

The plan was to do an ileostomy laparoscopically and look at the blockage. Avastin limits healing so they didn’t want to do anything too invasive if possible. If the “mass” (isn’t that a horrible word?) wasn’t invading any of the blood vessels, etc. they would consider removal. However, the initial plan was an ileostomy and figuring out what we were dealing with.

I woke up to an ileostomy, which isn’t pleasant or my first choice, but the plan is to eventually have it reversed…in potentially four months. I also woke up to 36 staples on my stomach where they did open me up which was really the best-case scenario.  When the GI/Onc did the ileostomy he saw that the 10 cm mass (think baseball) could be removed in one piece which he did.

Recovery

The next several days in the hospital were a bit of a blur. Ok, all of it was a blur. I don’t remember a lot of the first few days, but I do remember the hands on the clock moving backward and when I looked at my incision it was an inch to the right of where it really was.  Again, it was a blur with a side of some big drugs.

When I was able to leave the hospital a week later, I was weak, tired, and scared.  My abdomen hurt and I don’t love pain pills (except the ones through the iv that made the clock go backward weren’t bad!). I also had to learn how to handle having an ostomy.  Mine is on the front next to my belly button.  I want to say it’s gross because to an extent it is, but it also helped save my life and with some hope, it will be reversed.  Another one of those things I can’t change so I can’t worry about it.  Doesn’t mean I like it but, I can’t change it.

Home

Rob had the house set up and ready for me, including a bed in the family room and everything I could want or need within an arm’s reach.  He’s been taking very good care of me, maybe too good.  In the beginning, I could barely stand and was sleeping a lot.  We were also figuring out what I could eat which was very little and in small portions but I’ve definitely gotten stronger.

I’ve was starving when we first got home but have been eating. I have lost weight and am working to put it back on. I need strength and being this skinny doesn’t make you strong.

It’s been four weeks since my surgery and as of last weekend, I feel like I’ve turned a corner.  I’m able to get around easier and am not sleeping as much so I am definitely headed in the right direction.

Where Do We Go From Here

What’s next? I’m not sure yet.  We have waited for pathology on the mass and the initial reports look like it is my cervical cancer but there was some question if it could be some sort of secondary cancer.  We are waiting on a few more answers but it looks like I will have a few months of chemo to be sure everything is gone.  After confirming that there hasn’t been another recurrence in my rectum my ileostomy will be reversed.

Strange and Unexpected

So why has this recurrence been so strange?  I’m used to recurrences in my pelvis.  I’m used to feeling a weird pain or enlarged lymph nodes somewhere.  This had none of those and I recently had a CT scan where it did not show up. I was truly blindsided but grateful for the team of doctors who are working to figure this out.