My journey has encouraged me to educate myself about cancer, and I read a lot about survivorship and fears cancer fighters have. Knowing that it is very normal to fear recurrence validates my feelings of late. No matter what type of success someone has combating this indiscriminate beast, we are never guaranteed 100 percent cancer free lives.
I’m still taking cancer drugs, and will have to for at least another year. The side effects are both physically and emotionally draining some days, and they contribute to my fear of hearing those words again, “It’s back.” Because to have to go through this all over again...it's scary.
It might be silly to think this way, since I have always had a good prognosis, but all I know is that it influences how I respond to a simple spike in temperature or a new reaction to the drugs. It’s why a simple blood test I took three weeks ago scared me more than anything else ever has, even more than my diagnosis in 2009.
This past July I was feeling a little low from the side effects (joint pain and severe hot flashes) and I was also preparing to launch this blog and the online memorial to our mother with my siblings. To help me deal with this my oncologist switched a few things around for me with some new drugs to combat the worst of the side effects. After a few weeks, and to make sure I was still responding well, she had me do some blood tests.
The test results returned as all good, except for a liver enzyme level that she wanted to recheck. The enzyme, known as Alkaline Phosphatase or ALP, was elevated outside the normal range. Before the second test, I stupidly consulted Dr. Google (as my sister would say). Yes, I did it again.
And, of course, got thrown into a whirlwind of anxiety by the volume of data that tries to explain to the layperson what an elevated ALP means. I must say that the availability of medical information is a good thing and I think we would be poorer for not having it at our fingertips, but without context or the ability to really interpret it, it’s a hypochondriac-maker!
I did the second test and the ALP was still elevated outside the normal range. Oh, boy. I immediately went into hyper-angst mode thinking, “I have cancer again.” How silly is that? It’s not like I really knew what I was reading, nor could I change the results even if I did know. Yet, there I was building anxiety in my own head and freaking myself out. How many of us do that to ourselves every day? In speaking with others who have fought this disease, I’m not alone in how I reacted.
My oncologist tried to allay my fears by telling me that she wasn’t overly worried about the results, but since she is super-cautious, added to the fact I had an aggressive cancer before, she wanted to me to get CT and PET scans.
A PET scan? Really? I had only known of people with metastatic cancer having to get those, just like my mother did. I didn't really know more than that. My anxiety went off the scale. I told myself my oncologist knew more than she was telling me, and she just didn’t want to scare me until she had more data. My instincts have always proven me right before, so the cancer must be back, right?
Next on the anxiety train, I had to tell my family about the tests. I debated if I should, but the last time I waited until I had the all-clear to tell them…well, let’s just say it’s safer for my ears if I share information with them early! I know that they are as invested in my wellbeing as I am in theirs, and keeping this from them was not an option.
I did the PET and CT scans this past Wednesday. I was loaded up with a radioactive isotope (no, I did not glow bright neon blue at night, and yes, a number of friends asked me that – ha-ha), and prepared myself to find out if my world was about to change yet again. It’s not an experience I want to go through anytime soon, since my allergies to contrast dyes and my small veins made for an uncomfortable and upsetting experience. The long afternoon at the hospital and the gentle voices of the medical team only served to exacerbate my fears.
The next day, as I waited fretfully for the results, I spent some time reflecting on the many good things I have experienced recently. Not only did I launch this blog with my amazing siblings, but I also had a life changing experience at SURVIVORville 2014 this past July.
At this survivors conference I met so many amazing women that have gone through multiple cancer fights, and for some of them, through recurrences of different types of cancer. Even single instances of survival were celebrated. Guiliana and Bill Rancic, keynote speakers, relayed their shared experience through her own diagnosis. It was empowering to listen to. Every single person there was standing strong and loving life. And every single one of us would do it all over again if we have to.
I remembered my moment of clarity at the conference, what the organizers called our "aha" moment – that recurrence may be a natural fear, but it is just another fork in the road, it isn’t a roadblock. It’s scarier to not have any fight left.
So here I am. I know that if the cancer comes back I will fight again, and again, and again. There is no other option. And taking that fork in the road may be frightening, but I can do it, and so can my family. And, so can you.
Oh, and the scan results? I guess I can save my energy to walk that path some other time, some other day. But not today. I remain a survivor.