A Cancer Journey IV

Salt Lake City Calling

When Jo and I met with Dr. Huntington in July and got the news that my cancer would require a different surgery, we were stunned. Chemo was progressing and nothing had been said that indicated an increased risk. Nonetheless, there we were. So, as my eight rounds of chemo were starting to wind down, a new battery of tests were ordered by Dr. David Griffin from Intermountain Healthcare and Jo would take me to Salt Lake City for an appointment on July 25th to meet with him.

Before the travel commenced, we had some business to attend to. I call this Jo business because it’s what she does. Sure, it helps Idaho River Sports, but more importantly, it helps all of us. On July 22nd, two days before leaving to meet Dr. Griffin, Jo hosted a PFD (personal flotation device) giveaway event at IRS with the City of Boise, St. Lukes and the Boise Fire and Police departments. We outfitted a large group of kids from the neighborhood with PDFs and talked about water safety. Here are some photos!

Jo drove us down to Salt Lake City on July 24th for our appointment with Dr. Griffin the next day. We had a rare chance to talk, tell stories and enjoy time our time together. Jo told me about the spruce that march across the high desert in southwest Idaho and I told her about Burley’s old Ponderosa Inn and how, back in the 70’s, it was a top party stop between Boise and Pocatello. Heading into Utah, I was struck by the growth and how it was still the same crazy place to drive.

Jo handled everything expertly, got us to our hotel safely. Our first impression was of the hospital itself. It is huge. I estimate the facility to be at least three times the size of the Boise downtown St. Lukes. The buildings occupy a huge chunk of ground next to Interstate 15. One of the things I noticed the night we got to Murray was my insurance provider Selecthealth is located right across the freeway from the hospital.

Despite dealing with my feeding tube we were up and at ’em early, grabbed some hotel breakfast buffet and headed straight to the hospital for our appointment with Dr. Griffin. Once there we spent some time marveling at the facility, the striking, but not so pretty view to the west from our perch on the 6th floor. We got in and met Dr. Griffin and his surgical nurse Tammy. Our first Idaho connection was Tammy’s grand father has a cattle operation in New Plymouth where she visits often.

We met for longer than scheduled with Dr. Griffin and Tammy. Discussed the probability, based on his review of the previous scans and tests, that the preferred colon resection surgery wasn’t going to work. The following is from his appointment notes. Yeah, I chuckled too… pleasant?

“David is a pleasant 68-year-old male with past history of tobacco abuse who presented earlier this year with a locally advanced GE junction adenocarcinoma or perhaps a proximal gastric cancer with significant extension into the distal esophagus. Regardless, there is bulky disease.”

That’s when we were introduced to “supercharged jejunal reconstruction and Roux-en-Y configuration” surgery and prehabilitation and the need for several new tests. Both of the surgery terms are real mouth fulls and pretty daunting to say the least. I also asked Dr. Griffin about some pain I had been having with around my feeding tube which Dr. Huntington suggested I ask him about. He took a look, explained a little about the position of the feeding tube, held the tube and did a quick yank – the pain was gone! I think Jo and I were pretty well sold on Griffin and his team in that moment.

After our appointment Jo dashed to Starbucks as fast as she could. We loaded up on lattes and pastry and hit the road back to Boise. I would be lost without Jo’s support, storytelling, empathy and understanding.

Continuity of Care

Excuse me while I advocate… not about my own health, which I do, but about “continuity of care” and the role of the Primary Care Physician or PCP.

From the point my surgery was referred to Salt Lake City I would start to see some places where cancer healthcare services and continuity of care start to feel strained. Continuity of care is about quality of care over time. The patient and the physician-led care team are “cooperatively involved in ongoing health care management toward the shared goal of high quality, cost-effective medical care” or so says the American Academy of Family Physicians (AAFP). Here’s my observations.

The new tests Dr. Griffin ordered up included new CT Scans, a Pulmonary Function test, a colonoscopy, blood work, an ultra sound and so on. I managed to get all of the CT Scans set up back to back to back at St. Lukes Imaging downtown and the rest happened pretty quickly except the blood work and Pulmonary Function test, which was a month out in late August. The final test would be another endoscopic exam that Dr. Griffin would perform in September. Lots of anesthesia.

It made sense to get the tests done in Boise instead of trying to manage them all 340 miles away in Murray, Utah. Dr. Griffin agreed. Of the seven tests he wanted me to get, six would be done in Boise by St. Lukes. While the scans and scheduling for most of the tests happened pretty easily, the simplest of them, the blood test, seemed doomed. I walked the test order through at MSTI a couple of times only to hear the faxes wouldn’t go through from Dr. Griffin’s office. I finally stopped in after one of my tests and checked at the front desk. The receptionist told me she would stay through triage on it until it came through. And she did! Except no one let me know the order had come through. I finally called and got them done 2 weeks later at the hospital, not at MSTI.

Now that the focal point of my care had shifted to Salt Lake City as the site for my big surgery, it seemed these types of miscommunications would be the order of the day requiring me to advocate for my care more than ever. Another example. While getting the new colonoscopy scheduled with minimal intervention on my part, the results weren’t communicated to Dr. Griffin for several weeks until after I involved. The colonoscopy came off without a hitch on August 2nd, just a week after getting back from seeing Dr. Griffin. After several attempts I intervened and finally got the colonoscopy data sent on August 27th.

While we may not need any more research about the benefits of continuity of care, there do seem to be gaps. The evidence about continuity of care is clear – it improves preventive and chronic care services, patient and clinician satisfaction, lower hospital utilization, lower costs, and for elderly patients, lower mortality, etc.

The Utah Surgical Team

Our second trip to Utah was guided by Kelsey. She lined up an AirBNB near the hospital and off we went. The drive was uneventful. The summer heat was hanging on and it was easily in the 90’s as we rolled into the Wasatch Front. My afternoon appointment was a plastic surgeon named Ferguson who would be doing the fine vein work around the graft site in my neck and lower GI area. The next morning I would have a surgical endoscopy with Dr. Griffin so he could “see” what was going on first hand. I liked the idea.

I wouldn’t meet a third surgeon named Diaz who specializes in ear, nose and throat. He would be working in my neck while Griffin and Ferguson worked in my gut and then exit when his throat work was done. I assume he would be detaching the esophagus and prepping the throat for the graft.

Kelsey with the Wasatch framed in a breezeway at Intermountain Medical.

As we rolled up that afternoon for our appointment we had a couple of hours to burn. Kelsey wanted to get an idea of the layout at Intermountain Medical. She too was impressed by the sheer size of the hospital as well. We looked around for a while and found a place for lunch located in the hospital named Siam Noodle Bar. It was really good. Then we went up to see Dr. Ferguson.

Dr. Ferguson is located in the same tower as Dr. Griffin. He was pretty much on time and we went in and got settled. This was a bit of a different experience from the one Jo and I had with Dr. Griffin. Dr. Ferguson was brief, direct and to the point. He explained what he would be doing and gave is own assessment of what I was facing. It was kind of chilling to hear him say this was a “surgery of last resort”. Basically, if it failed, that would be the end of it. And with that my time was up and the appointment was over.

When we got out into the hall and headed to the elevator it was like we were both a bit dazed I think. As we approached the elevator I decided we should go up instead of down and check in at Dr. Griffin’s office. When I checked in I said, is there anything I needed to be doing or know prior to the endoscopy in the morning. The receptionist called back and then told us to take a seat and Dr. Griffin’s nurse would be out. Within a few minutes Tammy popped out and we talked, she met Kelsey and a bit and then she said to sit tight that the doctor would be back shortly. Sure enough, about 10 minutes later Tammy came out and we went back into a one of the rooms and then Dr. Griffin popped in. He was in street clothes with a sling style backpack.

Dr. Griffin asked how the appointment with Dr. Ferguson went and how much time he spent with us. He also asked how I was feeling, how my weight was doing, and told us about visit time limits and other policies… clearly he was off record at this point. We talked about the surgery and how the recovery would be and what he hoped to see in the morning. We were together for about 30 minutes all told. By the time we left Kelsey and I both felt much better. And it was close to time to eat again. This time Kelsey was stoked to visit iHop! She had chicken and waffles and I had scrambled eggs… oh well.

It feels like I have been writing about this journey for years. Actually I started this after returning from the visit to Utah with Kelsey. What was striking about this trip was spending time with Kelsey. We hadn’t spent this much time together since she was a little kid. She was attentive and caring as we readied for the endoscopy at 5:30am. We weren’t all that sure what time we needed to be to the hospital but we decided to be early instead of late. Besides the adventure of getting lost in the emergency lanes on the other side of the hospital, we made it fine and eventually found the surgery check in lobby.

Totally unlike St. Lukes, the check in was a bit clumsy. The self check in didn’t seem to do anything and when you were finally checked in you get a big round pager device and instruction to go “through that door” and to the left when it goes off. At St. Lukes you usually get an escort to the pre-op area. Once in, we had a great experience. Nice staff and good jokes… the tech who did an unexpected EKG had a couple of zingers:

“Why do nurses have red pens?” (in case they have to draw blood)
“What did the green grape tell the purple grape?” (breathe!)

The anesthesiologist got it right away as well… I asked for extra n2o and understood to go easy (unlike what I want for the big surgery) and to have fun. The pre-op nurse Carmen was awesome as well. In fact the pre-op and post-op nurses sent me a card! Dr. Griffin stuck his head in and said good morning and away I went. Kelsey said it was quick and she had found a place to get a latte. Kelsey saw Dr. Griffin after I was out and said things looked pretty good… but not so good that we wouldn’t be doing the supercharged jejunal reconstruction.

Near Idahome area and Jo’s marching junipers

I woke up pretty easily after the procedure. We said good bye to the hospital, stopped by the same Starbucks Jo and I had visited and then hit the road to Boise. We were both exhausted from the ordeal. We talked some, mostly about the madness of traffic along I-15 and then, as we entered Idaho, Jo’s marching junipers. The drive was punctuated by thunder storms and temps were 30 degrees cooler that the day before.

Hopefully surgery will mark the half way point of my cancer journey.

I need to continue being focused on getting as healthy as possible for surgery, prepared for the worst and keeping the best, positive outcome possible in mind at all times. Doing wills and preparing for the worst and planning for the best is quite a juggling act. The ups and downs seem to be steeper as time passed and little else could be done. I think the waiting is the tough part. And then there’s my 14 or 15 year old senile cat Charlie and the changes she has not so gracefully endured.

Now that surgery is next week on October 14th, I can’t get over how fast the last 10 weeks have passed. Many thanks to my PCP Dr. Stacia Munn for getting me in this week and giving me words of encouragement. To Jo, Kelsey, Ben, Noah and my niece Jessie for your last minute help and support. I am so very thankful Jo and my kids will be in Utah for my surgery.

See you on the other side.

After 14 days in Utah, 12 days spent in the hospital, we’re home.

Coming soon… Click here to read about my unique “big surgery”.

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