An unexpected PET scan

After my CT scan in October that showed a metastatic tumor in the upper right lobe of my lung, I scheduled a follow-up PET scan for 8 weeks later, to coincide with my previously scheduled Opdivo infusion in mid-December. The Friday before Thanksgiving, however, I spoke with Dr. Andrea Apolo, the head of bladder cancer research at the National Institute of Health’s National Cancer Center. She has been following my case for years and had just reviewed my October CT scan. She suggested that I should be able to get a PET scan after only six weeks. I decided to ask my Kaiser oncologist in Virginia if I could get the scan at a Kaiser facility in Denver, since I was going to be in Utah during that week (and Kaiser isn't in Utah). It took a few phone calls and emails to pull it off, but everyone cooperated to schedule a PET for me on Wednesday November 28 at a Kaiser facility in Lonetree, south of Denver.  A roundtrip Southwest flight for the day was less than $100 (Frontier was $20 cheaper, but I refuse to fly that lousy airline if there is any other option.)

Yesterday, my daughter Kirsten met me at the Denver airport, and a we were able to spend the day together. She and her boyfriend had recently decided to tie the knot, and yesterday they asked me to officiate. I said I’d be honored to do so, as long as I was still alive. The wedding is planned for next September, but 10 months is on the long end of a worst-case scenario of my metastatic cancer going full-tilt and nothing succeeding in slowing it down. It may seem strange to those who have not lived with an uncurable metastatic cancer, but my family is comfortable with talking candidly about the elephant in the room. Plus, it makes for great opportunities for some dark humor.

We arrived at the Kaiser Lonetree facility, checked in and were sent upstairs for a glucose test. But when my number was called, the tech told me that my scan had been cancelled because the machine was broken. But it was working when they checked me in, I said. Not her problem. Go away. Next! I went back downstairs where the radiology receptionist confirmed that the machine had once again quit working – apparently it had been on the fritz for several days. A technician would come out and discover someone had tripped over the cord and unplugged it or tried to reheat a leftover turkey sandwich or put another quarter in the slot or whatever. Could they reschedule me for another day? No, I flew here specifically for this scan and was flying out tonight. Not her problem. Go away. Next! But I didn’t go away. I asked her call the other Kaiser facilities in Denver that had PET machines and see if they could work me in. Instead she gave me the number of her boss, then got up and walked away.

After peeling my jaw off the floor, I called the boss and got a generic voice mail. Halfway through my blunt message it dawned on me that this was probably not an actual Kaiser employee, but likely an ex-boyfriend of the receptionist. I ended the message, shoulder surfed into the locked offices behind the receptionist, walked into the scheduling office, sat down and explained my situation to the surprised employee. I asked her to call the other Kaiser facilities and get me worked into their schedule for today. She said she's try and I said I'd sit and wait. Downtown Denver couldn’t do it, but the Lafayette office north of Denver could get me in at 5 pm. Great, I said. But the Lafayette office said that I’d have to be there by 4 to get the FDG contrast, and there wasn’t time since it was an hour’s drive and it was already past 3. Give me the contrast here I said. She said she couldn’t do that. Call your pharmacy and ask I said. She called the pharmacy. Yes, they would do it. I asked her to call the lab and authorize the glucose test, and that I expected the contrast to be ready when I got back. And it was. Sometimes you just need to be persistent in your self-advocacy.

Kirsten drove me up to Lafayette on the north end of Denver, and I was immediately walked back to the scanner, laid on the table, and nuked. Kirsten and I chatted about wedding planning as the tech burned two disks with the scan images, then were on our way. Since I hadn’t eaten at all, Kirsten took me to Brothers barbecue where we each ordered the two meat platters. There is something about eating good barbecue with your adult kid that warms the heart. Or maybe it was the spicy sauce. But having my daughter accompany me for the day made the madness worthwhile. I flew back to SLC and arrived in Huntsville at 1 am this morning.

After awaking, I emailed my Kaiser oncologist in Virginia about my having the scan, and asked her to email me the reading once she received it. I also mailed to Dr. Apolo one of the disks of the scan. I’ve scheduled a meeting with her for December 10.

This evening, I received a response from my Kaiser doctor. The scan results were unexpected. The radiologist did not fund any tumor in my lungs (“No developing pulmonary nodule”). However, the radiologist did not compare this scan to the October scan that showed the lung tumor, but instead compared it to my scan in July of this year that showed no pulmonary tumor, but suggested I’d had a complete response from my outbreak of mets in April. So I’m skeptical. I’ve asked my Virginia-based Kaiser oncologist to request a reinterpretation, comparing it to the October scan.

The Colorado radiologist did find two other suspicious tumors, however: First, a “solitary enlarged prevascular mediastinal lymph node image 58 measures 1.3 cm with SUV max of 5.1 compared with 1 cm with SUV max of 3.2 which is suspicious for a metastasis.” Something is going on there. Second, "12 mm transverse diameter hypoattenuation right lobe of the thyroid demonstrates low-level metabolic activity with SUV max of 2.4, unchanged.” My thyroid has been previously examined and found to be benign, so I’m not too worried about that.

I’ve emailed three of the clinical oncologists who are following my case (Dr. Ferrera with Kaiser in Northern Virginia, Dr. Apolo with NIH NCI in Bethesda, and Dr. Hahn with Johns Hopkins in Baltimore), and asked for their thoughts. The suggestion that my lung tumor has simply disappeared seems too remarkable to believe, so I’m asking for verification. I’d assumed that I’d be entering a clinical trial in January, but if the scan reading is accurate, then perhaps I can postpone that and instead look forward to dancing with my daughter at her wedding.

Infusion 54 and thought avoidance

I’ve spent the past few weeks mostly not thinking about the metastatic tumor in the upper right lobe of my lung, with tendrils creeping out like kudzu, sucking the life force from the adjoining cells and feeding the malignancy. I have tried to ignore the knowledge that this new carcinoma likely lacks the PD-1/PD-L1 connection that has allowed my monthly of infusions nivolumab to enable the T cells in my immune system to strip the camouflage from, then consume, the tumors in my lymphatic system. I do not dwell on the likelihood that each day thousands of new cancer cells are colonizing in my bronchial tubes. I disregard the data that suggests the average life span of a person who has metastatic solid tumors in their organs is less than a year. I try to not think about these unpleasant facts.

Instead, I try to live each day as joyfully as I can. I visit Jennifer once or twice a day in the hospital, where for the past month she has been receiving treatment for her cognitive issues, and am grateful that I can see her, hold her hand, and tell her that I love her. I read books with my grandchildren. I continue to churn through my book list (most recently, The Coldest Winter, by David Halberstam; The Battle of Arnhem, by David Beevor; Dereliction of Duty, by H.R. McMaster; Leonardo da Vinci, by Walter Isaacson; Lincoln at the Bardo, by George Saunders). I visit with family. I sort through the remaining residue of my life’s accumulations, curiously pleased when I can empty another box. I look forward to skiing this winter, slowly acquiring the necessary gear. A small voice sometimes whispers that I probably won’t be skiing as much as I would like, but I let that sour thought dissipate like a fart in the wind. Sometimes the preparations are more pleasing than the performance.

On Monday night I flew from Utah to DC, and slept in my almost empty house. Yesterday I went in for my labs, then went to lunch with Spencer. He’s working (and mostly living) at a residential treatment center for college-aged kids in rehab, and is getting his firefighter certifications. It’s good to see him carving out a place in the world. Kirsten received a job offer doing social work in the Denver area, and she and her boyfriend are talking about tying the knot. A few weeks ago they flow to Utah and we had a long conversation about the possibility of his joining the family. I guess my cleaning my Glock while we talked didn’t dissuade him. I wish them every happiness. I speak with Garrett each Sunday and hear about his life lessons while at Carnegie Mellon. I am grateful that my children allow me to share in their joys and sorrows.

Yesterday afternoon I met with two curators at Dumbarton Oaks, a DC museum that has a specialty in pre-Columbian artifacts. I brought with me a dozen pieces of ancient Peruvian pottery that had been given to me over two decades ago by my late stepmother. She told me that the artifacts had been discovered by her first husband in the 1950s while he was working as an engineer on a construction project in Peru. He told her that he barely had time to grab the pottery before the site was bulldozed. They have been sitting in my garage ever since. 

I first tried contacting the Peruvian embassy, but no one seemed interested. I tried the Smithsonian, but was told they had strict conditions and likely would not accept them. I found similar pieces that were being offered by dealers for anywhere from $300 over $1000 each. One dealer offered me $3000 for the lot based solely on my photos. I preferred that the items be professional curated, and eventually I was referred to the curators at Dumbarton Oaks. They carefully unwrapped the pieces, documenting each step. They could not promise to take them into their collection, but said that if they could not, they would refer me to other museums that might be interested. I’m not interested in the money; rather, I’d like to see them displayed. I’m just trying to do the right thing.

This morning I met with the handyman who has been working on my Great Falls house to review his never-ending list of projects. I also met with my realtor, so we could re-list the house. I’m more than ready to have it sold.

This afternoon I had my 54^th Opdivo infusion. As usual, it was routine. I spoke with the nurse about the new mets, and how I likely will be entering a new clinical trial in January. Those decisions will be driven by the results of my PET scan in 4 weeks. I try to not think about it, and instead think about snow.