"your cancer might be back". While many of us unfortunately live with a fear of recurrence, it's hard to prepare ourselves to hear that it could be back for real. Read more below.
I've been sitting on this post for awhile. I wanted to share this with you in an effort to be honest about this shitty journey, but I had a lot to process so it took me a bit to get this together. So without further adieu here it is.
A few months ago I received a call from my Nurse Practitioner(NP), telling me they found a few B cells in my spinal fluid. She kept talking but I honestly have no idea what she said after that.
I had prepped for the leukemia to come back in my bone marrow; I'd been vigilant with my blood counts, looking for any oddity. I hadn't prepared for it to rear its ugly self in my brain. Eventually I came back to the phone call just as she was telling me I would need to come in for testing over the next two days.
I had been in remission for almost 18 months, and while I know there is no guarantee it's permanent, I like to think that I'm better off the further out I get. In the cancer world, the 18-month mark means that your chances of being cured rise 20% - so getting this news a week before my actual 18-month mark and Thanksgiving wasn't making me feel super thankful.
After hanging up the call, I ugly cried. I ugly cried so hard I would've made Dawson
proud. I called my mom and she came to the rescue, as she did whenever there is a new hiccup in the kick-cancer's-ass
The following day I was in my own negative la-la land. I tried not to assume every pain in my head was the cancer making its grand appearance. I was angry, upset and scared - not the best feelings to have when I still had another 24 hours before anything could be done. Days later, in one of those weird "medical tests make you think random things are possible"
moments, I tried to will away my cancer. I ate healthy things for breakfast and lunch – because fruits and vegetables have magic cancer-killing powers that start working within hours of eating them.
I tried to focus on hoping this wouldn't be the first Lumbar Puncture
(LP) of many more to come if the results were positive. That I wouldn't be losing my hair anytime soon, or enjoying another month long stay on Feldberg 7- as much as I love my nurses. I told myself if I just kept thinking good thoughts then the cancer would magically go away and none of this would be necessary and I wouldn't need chemo ever again.
My mom and I headed to the hospital - prepared to wait in purgatory until being told the doctor was ready to stick a needle between two of my lower vertebrae (oh that's what an LP is...it feels awesome. Totes recommend trying it out sometime). When it was time, my oncologist and NP began to prep the room for the procedure:
Step 1: Kick the patient's mom out.
Step 2: Have patient assume curved position (one I'd become all too familiar with).
Step 3: Take scary long needle out of sterile package
Unfortunately this time wasn't as easy as my last four. The pain and stress got the best of me, and I passed out. Luckily they took the needle out before my head hit the bed. I somehow managed not to get admitted that night, but I did get a rescheduled appointment. #Perksofcancer: no waiting for appointments. Things moved more smoothly in the make-up appointment. My oncologist collected the test tubes of spinal fluid and sent me away.
I checked the site where my counts are published at least ten times a day until they went live. Knowing that my actual results wouldn't be published for weeks didn't deter me from trying to make sense out of the numbers I was seeing.
So when I finally saw my numbers I freaked out. There was a new cell type appearing and my red blood cell count was an astounding 700+ (it's supposed to be 0). Was I dying? Was this it? The cancer had spread to my brain and that's where my story would end. I had convinced myself that I would need to move forward with the new treatment and prepared myself. I focused on coming up with how I would tell my boss, my friends, and my family. Working with my boyfriend to come up with a plan of action - not only for getting the help we needed, but basic things like who would watch the dog so he could spend a night or two in the hospital with me.
Then the day came where I read the least comforting email from my NP I've ever received: "You're a difficult stick so blood
probably leaked into one of the test tubes. I'll call to discuss the other results further later today."
Part of me was glad she didn't say to come in - you only give bad news face to face after all - but the other part was wondering why she couldn't just email me "Things are fine!" What was so complicated she had to call me at 5:30pm rather than put it in the email at 10:00am?
Finally, she got back to me saying everything was fine. I was still in remission.
As I'm typing this I'm trying not to cry. It was such a relief to know it was only a scare and I didn't have to be subjected to more intense treatment. Right now, the cancer coming back is one of the worst things that could happen because I don't know if I can make it through more. I'm grateful that it was just a false positive but I know I'm not alone in having those awful days/weeks of waiting for results, and that's why I wanted to share my story.
Do you suffer from fear of recurrence? Share your story in the comments below.