February 2021 Archives

It's Called "Scanxiety"


(This is part 7 of a series. You can read the previous part hereNew to the series? Start here.)

D-2 Days

In two days' time, we'll be back at the Fortress of Cancer Research, Dana-Farber Cancer Institute. There we will meet with Dr. Enormous Brain. Heidi's blood will be sampled and analyzed using  Heidi's body will be examined using magnetic fields, radio waves, and X-rays. Dr. EB will look upon the results and declare, "Hmm, not bad," or something along the lines of, "Well, that's not so good."

I understand scanxiety, though I'm not the one undergoing the tests. During the beginning of the week, she was upbeat, positive that the results of Friday's scans will be good. In my engineering head, I know there's no real way for her to know unless something is bad enough for her to notice. But until then, it's really a tossup governed by the biochemistry—or "biochem-mystery"—that is the functioning of the human body. Amazing stuff, but pretty darned unpredictable. Certainly not predictable enough to say, "Yep, it's all going to come out well on Friday."

D-1 Day

It began to affect her yesterday. The anxiety was beginning to peek through. She got angry where she would have merely been annoyed. Weepy instead of dry-eyed. That sort of thing. And it really manifested itself more today when she admitted to her anxiety.

I began to ponder what I will do if the results are anything less than neutral at worst. Am I ready to handle the renewed concern, anxiety, worry? Can I handle not knowing what is in store without imploding myself?

As I ask myself these questions, it dawns on me that the answer does not lie within, but without. You can't derive peace from turmoil. I would liken that to standing in the middle of a sandstorm and trying to have an intimate moment with your spouse. Yell at the sandstorm, shield yourselves as much as you might, but it's not going to help. Instead, you have to look to God for the ultimate peace—the peace, as the Bible says, that passes all understanding.

D-0 Day

It is the morning of the scans and our visit to Dana-Farber. You might think that I'd be most concerned about what I will do in Boston for 7 hours while I need to work and she's in the Institute. But, no, that's not my concern. My anxiety is still looking forward to that moment when we have Dr. EB on the phone... well, I'll be on the phone and the two of them will be in the Institute... and he'll say something like, "Well, we got the scans back and..." (Drumroll please. And let me tell you something: HGTV has nothing on this kind of tension with their silly, "We chose... [pictures of each participant, the houses involved, the dogs, the cats, the leaves and rain]... The Little Bungalow!" cliffhangers.)

The reality is that unless something has changed drastically, the Xalkori/crizotanib should still be doing its thing, for a while anyway. We're only about four months into this treatment and median (Or average? I can never remember.) progression-free time is something like 21 months, so we really don't have to worry about that, unless she's an outlier... which she has been in the past... so... [insert anxious music here].

But the MRI is something new, and if there's something that terrifies Heidi, it's brain metastasis. Why? Because Xalkori doesn't cross the blood/brain barrier. It makes good headway between the bloodstream and most (all?) other kinds of tissues in the body, but the brain is a special fortress of solitude, taking in only what it deems worthy, and Xalkori isn't one to make it across that moat. (So maybe "headway" wasn't the best word, huh?) There are other ROS1 TKIs, though, which can cross that barrier, but finding "mets" in the brain would be a pretty significant step... and not in a positive direction.

And so that's where I am. I can feel my anxiety today, which is a bit more than usual. I will pray right alongside Heidi and the rest of you for peace and wisdom, both for me and Heidi and also for Dr. EB and the folks at Dana-Farber, especially those whose journeys are further along and not headed in a good direction. And I'll do my best to be not anxious, because as Paul wrote, "Be anxious for nothing, but in everything, by prayer and petition, with thanksgiving, present your requests to God. And the peace of God, which surpasses all understanding, will guard your hearts and your minds in Christ Jesus."


(Don't forget the thanksgiving. We owe a lot of that to Him!)

Continue to Part 8

(This is part 6 of a series. You can read the previous part hereNew to the series? Start here.)

I’ve been contemplating the choice between these words over the last few days.  

Yesterday (2/4) was World Cancer Day.

Today—looking back—is the 6th year since my single lung tumor was discovered and I started a Survivor Journey.

Today—looking forward—will be our 3rd day at Dana Farber Cancer Institute. This time for routine (How is that word even used in cancer care?) blood work, CT scans of my entire short torso, and an MRI of the brain.

Tomorrow—the sun will still come up and we will again be grateful for the day that the Lord has made and that we get to be in it. 

On my calendars, 2/5 has the notation of “Anniv #6”.  But my view of that has changed over the last seven months.  

An anniversary is some event that happens every year, each cycle around the sun. Dependable events, ones that are to be remarked upon or have memories revisited.  

February 5th no longer feels like an anniversary of a static event.

Since the recurrence of my cancer seven months ago and the miraculous discovery of the ROS1 RNA fusion, the things that felt like past accomplishments don’t feel just the same. “Cured” was a short step on my Survivor Journey. This is now (and maybe always has been) a dynamic and changeable path, one that we have to follow with Faith with the knowledge that our work and impact here is not yet done.  

So, I think the word milestone is more appropriate now as my confidence that anything will be the same 365 days from now as it is today has changed.

Along the way, we will have many more milestones.

Today—looking back—is the 6th milestone of stumbling upon a tumor that we never would have looked for in a never-smoker. And my life was saved.

Today—just now—is the daily Blessing that there are medical miracles, that my cancer has been typed, and that a treatment is available. (Imagine: Heidi taking a gulp of water and swallowing that big Xalkori pill. It's almost as big as my pinky!)  The ROS1ders have been a light in our lives to know that I have a rare cancer diagnosis but that we are not alone in it.

Today—looking forward—is the 2nd milestone when the scans will come back looking good and my brain will still be clear of cancer and just full of love and faith and quirky humor.

Tomorrow—we will start packing for another milestone trip to favorite places with our loved ones.

I am supremely grateful and know how blessed that I am to have had each of these last 2,190 days. AND I fully expect to have thousands more!

Thank you for all the Hugs and Prayers - they work!


Continue to Part 7