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Scanxiety + a Rollercoaster of Emotions

Every day is unpredictable with cancer. Some days Mike wakes up feeling good, works out, goes to work, plays with and helps care for the kids, etc. Other days it takes a lot out of him to muster up the energy to get out of bed. Lately, most days have been good. We were riding high off of the fantastic MRI report we received last month. It almost felt too good to be true. That's the thing - this whole experience is a complete rollercoaster of emotions. In my exploration of online patient and caregiver communities, I learned of the term scanxiety. Scanxiety is the stress and worry that you feel awaiting the next round of imaging. Mike gets scans every 3 months and likely will for the rest of his life. The MRI is scheduled out so in those few weeks leading up, the scanxiety starts to creep in. I start to become hyper-focused on Mike's every move and start to question him on how he's feeling. Most of the time the scan will reflect how Mike's doing - which has been really well. His scans have aligned with the significant strides he's made over the last several months. Nonetheless, we worry. As we get closer to the scan date, the thoughts become more intrusive and the eve of the scan is generally a restless night. Our NO (Neuro-Oncologist) has been so accommodating as she normally calls us the day after with a quick " I don't have the full report, but everything looks good!" or "everything is stable, no new spots." This has been so helpful in alleviating the anxiety that comes with waiting for results which typically would take a few days. So far, all of Mike's scans since finishing radiation and beginning his treatment have been great. However, this isn't linear and as soon as we're feeling good, we get a curve ball thrown at us. The other day just after sharing the positive news about Mike's latest scan, we got a call from his doctor telling us to hold his medication until his white blood cell count increases. It's dropped significantly since beginning it and this month it fell below parameters - protocol says to hold it and start back up at a lower dose once they come up. This was a major blow after JUST getting the reassurance that this drug was doing what it should be. Mike stopped taking his medication and was scheduled for weekly lab work to monitor. Meanwhile, we researched what we can do to boost WBCs - supplements, high dose Vitamin C treatments, etc. This was a tense week and a half. While Mike's counts are still not up (leaving him at high risk for infections), his medical team decided that they're comfortable with him starting back up at his normal dose today as long as he continues to be monitored closely. He'll also be starting an IV treatment 1x/month to prevent infections after having a reaction to the oral antibiotic that was prescribed. While the stress of being off the medication was unavoidable, we managed to make the best of it by celebrating Valentine's day a little early, seeing our favorite artist live in Atlantic City. This surely helped divert our thoughts while spending some time alone (which is pretty unusual these days). February 5-6th

Sometimes it feels like when things are going so well - whether it's the MRI reports or maybe Mike's feeling really good for so many days in a row, there has to be some reminder, like: "don't get too comfortable here."

Anyway, we're riding the wave and we'll take all the good news we can get! Mike has an appointment every month but once every three months that appointment is at the University of Michigan instead of Jefferson (per protocol for his treatment). He'll be traveling there later this month with his dad while I stay with the kids and join virtually.

His next scan is scheduled for March. Send positive vibes his way! xo

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You are a great writer. I’m so happy to read about your journey. How lucky Mike is to have you and those two beautiful boys to keep his spirits up and keep him looking positively to the future. Keep looking forward with hope and as much strength as you can muster.

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