We Drove 2,000 Miles To Los Angeles And Back And All I Got Was This Lousy Keychain

Today was supposed to be “the first day of the rest of my life” — the first day after my surgery in Los Angeles.

But if you’ve been following, you know by now that my wife and I made the 2,000 mile round-trip drive the entire length of California for nothing.

After arriving in Los Angeles on Sunday I completed the pre-surgery testing on Monday. Then, just 2 days before the surgery, I got the call on Tuesday that everything was cancelled. A spike in COVID cases left the hospital with not enough ICU beds.

I don’t know why, but the news didn’t hit me that hard. We just packed up the next day and made the 2-day drive home. I’ve suffered so long that I’ve learned just to take life a few hours at a time. Just one foot in front of the other and try to get through the day. I rarely have the physical strength or mental clarity to do much more than that. This setback felt no different than the countless daily setbacks I’ve come to accept over the last 10 years. Just roll with it.

But today, the day after my would-be surgery, was a little harder. Guts hurt. Sinus headache all day. Dark, rainy, cold and miserable outside. Discouraged that I’d run 1,000 marathons only to have the finish line moved yet again. All I wanted was a day off with coffee, a hot shower, and comfort TV.

I didn’t think I had it in me to figure out what to do next in regard to MALS surgery.

Strength For One More Step (With Help)

And yet… I guess I found the strength to write an email.

One thing this journey has taught me is to lean on other people. That’s hard for me. I have that mid-western upbringing with the unspoken rule of, “Buck up, stop complaining, do-it-yourself, and keep going.” Plus, I’ve been let down by people quite a bit. And I think my personality is a bit hard-wired to not want to be a burden on others.

All of that is why I’m so grateful for the MALS Awareness community on Facebook. Seems like regardless of what hurdle you’re dealing with, there’s other people in the group going through the same thing—and many people who are ready to help.

I’m not the only one who has had a long-awaited surgery cancelled recently. Seems like there’s several people a week getting that bad news. Glad to have some comradery in the misery.

Someone in the group messaged me privately yesterday with the email address for Dr. Starnes in Seattle, suggesting that I bypass the usual blockade of receptionists, schedulers, and nurses to talk to the Big Man himself.

I wasn’t so sure I wanted to risk irritating Dr. Starnes with a “run around” play. But enough people encouraged me to do it, that I gave it shot today.

I tried to be gracious and deferential in explaining…

• I’ve been trying for 5 weeks to get a consult with him.

• I called every day for 2 weeks before I could get someone to return my call.

• I finally heard from his team that I could get a consult, but that was 3 weeks ago and I still hadn’t heard anything.

• If I needed to stick to the usual process, I would gladly do that. But if he could get things moving, I would be very grateful.

And it worked!

To my shock, Dr. Starnes returned my email very quickly and said someone from his team would contact me today. And they did. There was a cancellation for Monday, so they worked me in for a video consult for this coming Monday 12/14/20!

The life lesson here is:

• Share your burdens with people. Some people may not help. Some may want to help and aren’t able to. But someone out there might have just what you need.

• People want to help you. They can’t if you don’t open up and ask.

• Letting people help you is giving them a gift. Meeting needs is way that we connect in a meaningful way. And because we are wired for connection, you’re giving people what they need and desire.

• Tenacity boils down to doing the thing you don’t feel like doing. Had I not found the courage and strength to email Dr. Starnes directly today, who knows how long my case would have languished at the bottom of the pile?

What’s Next

The fact that things are finally moving forward with Dr. Starnes in Seattle doesn’t guarantee that’s my final solution. There’s still hoops to jump through, like:

• He might require a celiac plexus block before he’s willing to consider surgery, which could take 2-3 months to get done.

• He might be delaying surgeries due to COVID cases surging. I’ve seen conflicting reports from patients having surgeries cancelled while others seem to be moving forward, so I’m not sure what’s going on there.

On the other hand, I’m always hopeful that things could move quickly. Because my schedule is flexible, and Seattle is only 3 hours away, I could easily jump in to get surgery if they have a cancellation.

There’s definitely some great benefits to using Dr. Starnes:

• He confirmed via email today that he removes 5 centimeters of the ligament around the artery, a complete celiac ganglion removal and neurolysis. That gives me confidence that he’s really going to take care of the problem and it would be highly unlikely I would need another surgery down the road.

• A Seattle surgery would be far easier on my family. My wife could drive me up to Seattle the night before surgery, drop me off at the hospital in the morning, then head home. No need to have someone stay with our kids long-term. At most, I would be gone from home only 1 week instead of 3.

I’ll know more after my consult with Dr. Starnes on Monday 12/14.

In the meantime, I’m leaving the Los Angeles surgery with Dr. Sheikh as a possibility. I’ve officially shut down the Utah surgery with Dr. Richards.