My Shadow

Before we left for Denmark I had experienced a couple of intermittent low grade fevers. I did some last minute blood draws before I left and everything looked normal for me. Since I am immune compromised we figured I just caught a little something others weren’t as susceptible to and everything would resolve on its own. 

Unfortunately, the fevers persisted. Coming on for a few days, going away on their own for five to seven days, and then  they would pop back up again. They would mostly disappear during the day but spike at night. Never high enough to alarm me too much, but always lingering in back of my mind as a low-grade worry. I would get mild chills and feel achy. Tylenol or ibuprofen would reduce the fever and take away the chills and achy feeling. I also developed a tiny baby cough. Just annoying.

When I experience fevers or new pains or anything that I wouldn’t consider “normal” it is like a little shadow that reminds me that I have this part of me that I have unsuccessfully hidden away. I know it seem weird, but I find myself wondering why I haven’t unwritten this part of my story. And damn it, that makes me really frustrated. I don’t want to be fragile or to take it easy. I have spent a lot of time listening to my body and fevers tell me I should rest, but my heart says don’t stop. I push on as best as I can, remind myself I have a really cool adventure to live. 

As the fevers kept happening we kept doing our thing. We kept living. We arrived in DK, traveled to the UK for 10 days, we moved into our apartment, we welcomed our first visitors, we arranged for the kids to go to school, and we explored our new home. 

I kept thinking that coming to Boston for my appointments would definitely give me answers. I was sort of looking forward  to it because as hard as it was to leave the kids and miss their first day of school send off, I knew I needed these appointments. I needed answers. 

My oncologist had thought that the scans might show obvious progression because she figured I might be experiencing something called tumor fevers. But the scans were not definitive that there was progression. So I might be experiencing tumor fevers or I might not. She thought okay if the scans aren’t definitive, surely the blood work will show an infection or something obvious. Again, nothing definitive. 

The CT radiology report said that maybe there was some new boney lesions, but it’s not certain because sometime when the bones are healing they also illuminate. It also said that there is a tiny spot on my liver that wasn’t there before. But too tiny to say if it’s anything cancery or not. Remember CTs are good at seeing pretty substantial changes, but not fine or small changes. The blood work said that my liver enzymes are elevated, but only just a little. The ground glass that I have had in my lungs is stable, unchanged for the last couple of years. But still I have this weird cough. So there in lies the mystery. 

If I wouldn’t have been having these fevers I might have been put on a watch and wait protocol and maybe we would have moved my scans up a little. But the unexplained fevers don’t make my team feel good. My oncologist wants to get to the bottom of what’s going on. 

So she ordered a urinalysis and two blood cultures to check for infection and a pulmonary function test to check my lung function. I took care of all of that at Dana Farber that same day. My lung function is great, so yay! Still waiting on the infection results. 

But there are two things I couldn’t do on this trip, and will have to come back for. My doctor wants me to have a PET-CT scan. This will illuminate my boney lesion metabolic activity. So those spots that are just lighting up on the CT will actually have some movement to them and we will get to see an enhanced view — are they healing or growing? And the other scan I need to do is a liver MRI to look at that tiny spot. Is it a lesion or just a freckle? 

So sometime in the next few days I will be playing travel agent, arranging appointments, booking flights to Boston, and figuring out where to stay and for how long. 

But I’ll also keep living. Because as much as my shadow reminds me I haven’t unwritten my cancer story, it also reminds me I don’t have all the time in the world. Be intentional. 

My oncologist left me with some good news though. If this mystery turns out to be progression and is cancer related, she said there are many drugs still in my tool box for holding this disease at bay. That’s hope. I definitely like to carry hope along on my adventure. 

Something she cannot give me though is this time back. I am ready to jump in to my life in Denmark. I want to walk the kids to school, make some bread, start Danish lessons, and really embrace the change. I am less overwhelmed by all of this than I was a few days ago, and more frustrated that I am being taken away again from my kids and husband and our Danish adventure.

Thank you to everyone that has reached out to me to check in, offer me love and light, rides, and places to stay. Ya’ll are the best community I could ask for. I am thankful for your support every day.