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.
About a month ago I received a call from my Nurse Practitioner(NP) saying they found a few B cells in my spinal fluid. She went on to say more but I honestly have no idea what she said.
I had prepped for the leukemia to come back in my bone marrow; I’d been vigilant with my blood counts whenever they came in, 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.
I hung up, and while walking in the middle of downtown at 5 pm I ugly cried. I ugly cried so hard I would’ve made Dawson proud. I called my mom and of course she was ready to come to the rescue, as she is whenever there is a new hiccup in the kick cancer’s ass plan. We made a plan for her to come up the day I was having the procedure done and to bring me home for an extended stay at their house.
The following day I was in my own negative la-la land. I tried my best not to cry, and 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 to go before anything could be done.
Then it was Thursday. In one of those weird “medical tests make you think random things are possible” moments, I tried to somehow just 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 three hours of eating them. I’m kidding, please don’t just eat veggies as your cancer treatment.
I did my best not to assume the worst, but when has that ever worked for me? I tried to focus on the hope that this wouldn’t be the first lumbar puncture (LP) in a long line of the dozens more to come in the upcoming weeks 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 needed and I wouldn’t need chemo ever again.
It wasn’t possible to think of anything outside of my little cancer world – so I made my mom pick me up early…early dismissal is still a thing in the real world, right? We stopped by my apartment to pick up Eli and my things for the weekend, and then away we went to the hospital. Where we would wait in purgatory until someone could tell us when the doctor would be 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).
Eventually I was up. 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 for the following day to once again have a needle inserted in my back. #Perksofcancer: no waiting for appointments.
Before the pain from the first needle prick wore off, I was back in my mom’s car and headed to Boston. Of course, we were late to the appointment, as is the case when the appointment is listed for two different times throughout the day. My nurse did not take too kindly to our tardiness. I had already been stressed about the potential negative outcome, and now had to deal with accidentally reading the wrong time. Chill, girl, accidents happen. Thankfully things were able to move smoothly for the rest of the appointment. My oncologist collected the needed test tubes full of spinal fluid and sent me away for an emotionally and physically painful few days.
I checked the site where my counts are published at least ten times a day until they went live. Knowing that my actual report on the findings of the spinal fluid wouldn’t be published for two weeks didn’t deter me from trying to make sense out of the numbers I was seeing.
So on Monday when I finally saw the 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 for this and tried to prepare myself.
I focused on coming up with how I would tell my boss, my friends, and my family. Working with Eli 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 Tuesday came – Monday was a really long day – and 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 come in for a meeting – 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 5:30 pm rather than put it in the email at 10:00 am?
Finally I called her at 5:30 and after getting the runaround and a call back from her an hour later, she told me 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.