Bill Eccles: December 2020 Archives

(This is part 5 of a series. You can read the previous part here.)

Hi, Y’all!  This is my first foray into blogging and I am not a seasoned pro like Bill.

So we waited and while Bill was posting, the sun set and we waited a bit longer to hear from Dr. EB.

I was in the tenth-floor waiting room. Bill helped pass the time by standing in a visible spot under the Christmas trees on the plaza and waving up at me until I could see him. You can envision the scene for the others passers-by on the ground and the other cancer patients in the waiting area, as we were both standing and staring at some spot and doing a full-length arm wave like we were trying to land a plane. All silently and socially distant, so as not to disturb others! 

And Dr. EB understands the stress of waiting and responded. He called me in at 5pm, a full half hour early! We got Bill on the phone and then braced for the news.

Dr. EB didn’t bury the lede—the scans looked good! Indeed they had to look thoroughly to compare, but the tumors had shrunk and my lymph nodes are now normal-sized.  Pause for a tissue—we were both a bit misty with relief. We both had a silent and not-so-silent, “Thank You God!”  

A few more details of side effect management and review of the radiology notes, and then another reassurance of, "The tumors are normal-sized. The Xalkori is working.”

The waiting is over. The news is good. The prognosis is greatly lengthened. So many prayers and effective warriors have been heard. We can look forward again, and maybe for longer than two months at a time.  

We know that there will be more waiting. But just for now, it is a time for gratitude and celebration! And maybe a really good bottle of wine!

Maybe our next entry can be about a travel adventure and not a medical one. :-)

/Heidi

Waiting

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(This is part 4 of a series. You can read the previous part here.)

For Heidi, the last three or four days have been anxiety-filled. I can't imagine what it feels like, though I have had pretty severe bouts with anxiety myself. Others in the ROS1ders group describe similar anxiety. It's an anxiety that I hope neither I nor you ever have to deal with, though I'm pretty close to it right now: the anxiety associated with finding out if your cancer is progressing or is in remission.

And so I sit here on the rooftop of a garage in downtown Boston near the Dana-Farber Cancer Institute. Near, and not in, because I'm not allowed to go in with the patient, Heidi. So while I'm sitting out here, enjoying one of Boston's most beautiful fall days (60°, sunny, clear blue skies, light winds... really quite perfect), she's inside. The good news is that DFCI does their best to ensure that the patient, Heidi, gets tests done in short order and all in one visit.

They called the patient, Heidi, a couple of weeks ago to make the appointment. First, bloodwork at 1:50, please arrive no sooner than 20 minutes prior to your appointment to ensure that there aren't too many people in the building. And the patient, Heidi, will be the only one allowed in. No visitors because you've already had your first visit where the patient, Heidi, can bring a visitor.

After that, go to have a CT scan done at Brigham and Women's Hospital. To get there, go from DFCI to Massachusetts General which requires a vertical traverse of several floors, a horizontal traverse through a bridge, and another vertical traverse through MGH. From there, walk a ways to another bridge to BWH, grab an elevator, and check in on the appropriate floor. We'd like you there at 2:30 so the patient, Heidi, can have 32 ounces of Raspberry-Flavored Barium Contrast. Is that dessert, perhaps?

After that, the patient, Heidi, will see the oncologist (reverse the path above) at 5:30pm. On a Friday afternoon. Yeah, he works long hours. But we're very happy that the patient, Heidi, is getting to see Dr. EB (Enormous Brain) and that he can consult with others in the thoracic cancer unit who have seen ROS1 patients before. It's not a specialty that everybody has because there are just so few ROS1 cases in the world at any one time. (That there's a targeted therapy at all given the low population of cases is, in my opinion, a miracle in and of itself.)

Now, I'm not making fun of any of this. It is wonderful that we're able to drive to Boston on a Friday afternoon, that she can have all of these labs and tests done prior to her oncology appointment in one day on the same visit, and then that she can see Dr. EB who has seen ROS1 patients before. In spite of the fact that I am not allowed to accompany the patient, Heidi, into the appointments for hand-holding and reassurance, we consider this time here in Boston to be a blessing.

And it's beautiful outside. So I can't complain about being out here, either.

However, no matter the circumstances, there's waiting involved. Is the cancer progressing? holding steady? in remission? We won't know for another couple of hours yet.

Imagine that you're the patient, (insert your name here), and try to feel like the patient, Heidi, as she walks the halls of DFCI, MGH, and BWH on her own, stopping to ask for directions (only twice!), being nervous about the tests you're about to have, being stuck with a needle (only once! I must say, these folks have their act together! the blood draw was done with an IV which was left in for anything else that might happen today!), having a scan done in a big machine ("hold your breath.... now breathe") which whirs disconcertingly around you ("whirrrrrrrr WHIRRRRRRRR!!"), and knowing that all of this effort and mental stress that you're going through may end up at the end of the day with a diagnosis which says, "You're progressing, and that's great, Live some more of your life!" or "It's not working. Remember when we said eight months? Well..."

If you can put yourself in her shoes right now, you'll have an idea of what it feels like to really wait.

I wait, too. However, I have work I am doing with a laptop, a cell phone tether, and a big Diet Coke which has melted to ice water at this point. I am distracted enough that I merely wait. Now, at some point, the patient, Heidi, will make a phone call when she's in with Dr. EB, and together we will wait out the last few minutes before his declaration.

OK, I'll be a bit more transparent here: I'm going to have to do some work tomorrow, too, to make up for the fact that I wasn't quite distracted enough by work. So Ipaused to write this and that I, too, might be waiting right now.

I might also be praying, too. In fact, not "might." Am.

That reminds me that the Bible says a lot about waiting. Funny thing, though: the Bible doesn't say anything about waiting for a cancer diagnosis. It talks about "waiting on the Lord." Since the Bible mentions "waiting on the Lord" well over 50 times, it would seem that it's just as difficult, if not more so, to do.

But right here, right now, waiting seems to be much, much harder.

Added 3:56pm: The scan is done... and right now, there's a computer somewhere with all the information in it necessary to make a conclusion. And so we wait some more.