I have been conditioned to put a lot of stock in my blood work since a high or low value can signal a problem. And since this journey began two years ago, my blood work has been consistently near-perfect (even while undergoing chemo).
So when my LDH level came back nearly the lowest it has ever been (188), I was relieved, which allowed me to mosey through the rest of my week with nary a worry about the scan. (LDH fluctuates in response to inflammation in the body, so a higher-than-normal reading usually signals cancer, or in my case, a possible recurrence).
Four days later, I met with my oncologist to confirm that my labs were stellar, so I wasn't prepared when he segued into saying, "but the CT scan found two new areas of concern."
It took me a minute to compute what he was saying, mostly because I was not expecting any bad news, but my body remained calm so I was able to ask the appropriate next questions:
"What does this mean?" and "What are my next steps?"
"We might be looking at a recurrence, or it may just be inflammation."
To make that determination, he was going to order an Urgent PET scan which would be able to look at the areas in more detail.
"Urgent" apparently means "two weeks" since my insurance company wasn't buying it that I needed another scan on the heels of the CT just weeks before. And at the cost of eight grand a scan, the process can't be hurried.
But finally, the PET scan took place on May 29th, the same date two years ago when I underwent my biopsy surgery. (Oh, the irony!).
My oncologist called me with those results, and explained that an area measuring 1.6 cm adjacent to my trachea was lighting up "like a Christmas tree" on the scan. The second, larger area of 3.0 cm, was not lighting up at all.
So, one lymph node was deemed "suspicious," while the other was not.
"I want to see tissue in a dish in a lab," he said, "before attempting to make a statement about what 'this' is." It could be an inflammatory response from a virus I had months ago, a recurrence of my Non-Hodgkins Lymphona, or nothing at all.
Although the result of the biopsy has the potential to completely upend my life again, this time in a much bigger way now that COVID-19 is a factor, I feel no fear.
I had already been told months ago that if COVID-19 turns up at the place I've continued working as a nurse throughout the pandemic, that I would have to take a leave of absence. And if I'm undergoing treatment of any kind, I certainly could not stay, whether there was infection in the building or not. This is in direct opposition to what I did last time when I continued working through all of my chemo and radiation treatments.
But still, I'm calm. Happy. Grateful.
Because the moment I was told the news after the CT, my body stayed neutral.
I felt no flip in my stomach or extra beat in my chest that would signal panic, and I've learned to put a ton of faith into how my body reacts to just about everything in my life--from what it needs throughout the day, to assessing what actions to take regarding work and friends, to receiving potential dire news--because it has always been so spot-on in its predictions by the way I feeeel.
Do I somehow have the inside scoop that this may not be a recurrence?
No, I think it runs deeper.
I believe my body's calm reaction because I'd like to think that it means that everything will be okay, no matter what.
My lab work and my health also tell a story that is not typical of recurrence: my LDH is nearly the lowest it has ever been, my other lab work remains perfect, I have no symptoms that would signal a relapse, and I have never felt better.
According to my oncologist, nothing is pointing toward a possible recurrence except for a 1.6 cm area next to my trachea that lit up on the screen.
"This is not typical," he kept repeating. "Usually we'd see an explosion of areas, not just one."
"But if it is?" I asked.
I expected him to launch into a litany of plans around chemotherapy or stem cell transplant, since that is the typical protocol with a recurrence, so I was greatly relieved when he told me that since the area is so limited, he was hopeful that a few focused rounds of radiation may do the trick.
But first, I met with yet another new doctor, a surgeon, over the phone on June 16th. The date initially felt too far away for an "urgent" consultation, but my oncologist had assured me that he and the surgeon were comfortable with the wait. And since the surgeon works at two separate buildings for two-week stretches, I had no choice but to wait...again.
In the meantime I remained calm, "forgetting" that there may be a potential problem up ahead.
My chat with the surgeon lasted all of 7 minutes, where he explained the procedure that he's "done hundreds of times" and laid out the risks, which all seemed fairly minor. After another 48-hour wait, I received news that surgery would take place as his first case, bright and early on Monday morning, June 22nd.
I felt no anxiety walking into surgery on Monday, and everyone--from check-in to recovery--was wonderful. Somehow in these past two decades, I've managed to have eight other surgeries so I have become somewhat of a pro at this.
As I was wheeled into surgery, I told the staff about my OR incident when my port was removed over a year ago: after being given my first dose of sedative, and without prompting, I launched into a very loud, very articulate count-down from 20 to 1 IN SPANISH! I wanted to warn them that I tend to embarrass myself under the influence...
Then poof! I was back in recovery, waking up, coughing, looking around in a dazed state of confusion.
I love that about surgery. One minute I was awake, laughing, and the next I was waking up, as if from a dream I could not remember.
The rest of the day was spent on the couch, feeling slightly "off" from my normal, perky self. It almost felt like I'd just had chemo, which left a literal bitter taste in my mouth. I had to remind myself that a scope had just been inserted into my trachea, and a sizable pinch of skin was removed, so of course I would feel out of sorts.
By Tuesday morning (yesterday), I woke up feeling very sore. My throat, my neck, my lungs, and my back all felt slightly on-fire. I was reminded of my nursing school days when I attended my first surgery. A very large lady was having a rotator cuff (shoulder) repair and the only way to keep her on the narrow operating table was to duct tape her to it! I was horrified, but it was then when I learned that man-handling lifeless bodies in the OR is not an uncommon practice.
(Hence my very sore body).
My oncologist called last evening and asked me to remain in quarantine until we get the biopsy results, hopefully by Friday. So now that I'm feeling better, I plan to take advantage of a few more days off from work while I recover fully.
Am I worried? Not really. What would worrying solve? Either there is a snag or there is not, and the only way to determine that is to have obtained a biopsy.
So for now, we wait...