Getting Stronger Every Day

I know! It's been almost two months since I sent my last update. Thanks to all of you who have written to ask if I am OK. I finally got over the trauma of being stranded at LaGuardia twice in a row on my check-up flights to Denver. Actually, I've traveled back to Denver two times since then. However, we made some changes that have made my travel easier.

The travel agency agreed it would be wiser for me to leave out of Portland, Maine, rather than Bangor, on a direct non-stop United Airlines flight to Denver. It means a two-hour drive from Belfast compared with less than an hour of travel time to Bangor. But once on the plane in Portland, it's Denver or bust.

During my ill-fated July trip, I noticed a few strange pink circles that appeared on my lower legs. About the size of the head of a pencil eraser, they were flat, deep pink with a white scaly ring just inside the outer edge and pink inside the ring. They didn't itch or hurt. I had never seen a "rash" like that. When I reported them with pictures to Dr Piquet, she immediately suspected they were a reaction to the antibiotic I was taking. She pulled me off Bactrim and substituted another antibiotic. Unfortunately, those ugly pink scaly spots kept coming and now pretty well decorate both my lower legs. I'll spare you a real picture.

AI Genrated View Of My Legs

Also, it shocked me when my hair started falling out in late July. I knew that with the chemotherapy I might lose some hair, but Dr. Piquet explained likely it would be just some thinning. Since I'd had no hair loss for three months, I figured I had lucked out. But no, for about four weeks, I shed locks whenever I showered or gently brushed my hair. I estimate I lost about 3/4 of my hair. The length of the straggly strands that remained made me look like a scarecrow. Patty, our resident hairstylist, gave it a trim, which helped, but I sure hope new hair starts to grow in soon. In the meantime, I've bought some stretchy velvet turbans to keep my head warm as cold weather approaches.

My New Thin Hair Style

Monica and I made our 5th trip to Denver on August 9th. My friend Carolyn, who also owns a cottage at Seaglass Village, offered to come up the day before, sleep over and drive me down to Portland. I greatly appreciated her help. Monica met us at the airport. Everything with our travel out of Portland on United went well. As we approached Denver, the pilot announced we might have a little turbulence as we descended through the cloud cover. Looking through the windows, the cloud formations were spectacular, but I barely felt any turbulence.

Cotton Candy Clouds Above Denver

Sunday, the 10th, was a free day in Denver. My cousin Dennis, a retired professor of economics, and an ardent Grand Canyon hiker had driven up to Denver from Flagstaff to spend time with his dad, my 100 yr old Uncle Tom, his sister Gayle, and me. I hadn't seen Dennis in years, though I'm an avid fan of his on Facebook. He is working towards a lofty goal of having hiked in the Canyon on everyone of the 365 days of the year. (not all in one year - he's been at it for a while) and he only has about 20 days to go to complete the challenge. He always takes pictures on his hikes and posts interesting narratives to accompany them.

I dug out a few old black and white photos of a very young Dennis and I with his parents, which we projected on Gayle's large screen TV while reminiscing about our childhoods.

Cousin Dennis And Me

Afterward, we visited Uncle Tom and then enjoyed lunch at a Mexican restaurant. I had some delicious shrimp fajitas. On the way back, we drove through Chatsfield State Park and around the Chatsfield Reservoir. Monica picked me up, and we returned to our hotel so I could get a solid night of sleep before my appointment with Dr Piquet the next morning.

We got to my 9 am appointment early. Unfortunately, we went to the wrong building. The Anschutz Campus is huge, and I've met Dr Piquet at several locations on the campus. At 9:10 am Sadie, the trial admin person working with Dr Piquet, called to ask if we needed her to help us find the location I needed to be at. She said she'd request a shuttle to pick us up. Outside the outpatient pavilion, the woman at the valet station told us a golf cart would be by to get us. Huh? We waited for 15 minutes, but no one came to get us. I texted Sadie that we were still waiting. Just as she texted me back that a big white van was on its way, the valet woman flagged down a passing golf cart. Already so late, we jumped in the golf cart and took off. We passed the white van meant to retrieve us halfway to our destination.

Unfortunately, our lateness (my bad) cut into the time I had with Dr Piquet. She checked out my polka-dotted legs and told me I needed to get one spot biopsied when I got home. I did my required walking tests and surprised myself with my results. I could now walk 25 feet unassisted in the time it takes normal people. The six-minute walk still challenged me, but I completed it with enough gas in my tank to walk back to the chair in the exam room. Rob, my PT (aka Darth or Obi taffy depending on my mood) and Dr Piquet both seemed very pleased. Yay! Then it was time for the blood draw. This time tied with my record for vials drawn at one time with 23 vials. (Cumulative number of vials drawn in the trial now at 299).

The Vampire Queens (Sadie Is On The Right)

Monica and I celebrated getting through the appointment by having lunch at her favorite restaurant, Grammy's. I had the BEST Cherry flavored Italian cream soda. The dry air in Denver always makes me so thirsty.

The next morning, Monica's husband Wayne drove us to the airport. Again, everything went smoothly, and Carolyn met us at the Portland airport to bring me home. I felt weary after the trip, but relieved that we'd had a successful trip.

Between that trip and the next, I listened in on a webinar presented by Kyverna Therapeutics, the biopharmaceutical company running the trial, primarily targeted toward institutional investors, many of whom are other biotech firms or large investment firms. The experts who talked about the trial knew their stuff. They explained that once all the trial participants had passed day 112 (from the T-cell infusion date) which they consider the primary outcome date, they would analyze the data they have collected. If the results are as good as they believe they will be, they will file a Biologics License Application form for approval by the FDA, which will allow them to move their SPS CAR T-cell therapy to market. My next check-up in September will be my day 112.

Before then, I had to deal with getting a polka dot biopsied. I went to my dermatologist's office, where a nurse practitioner examined me. She wasn't sure what to make of the spots, but she thought they were healing and all they needed was some Vaseline rubbed on them to keep them moist. She did not feel that a biopsy was warranted. I already had an appointment for a full body scan a few weeks later, so she could check on them then. When I reported this to Dr Piquet, she wasn't happy. She wanted a biopsy to be done, preferably before I returned to Denver.

I turned to my primary care doctor, who agreed to do a punch biopsy, but her jam-packed schedule made it impossible until three days before my flight on Labor Day, 9/1. While at her office, she noted my low O2 level at 92. Not surprising when considering my red blood markers had all been below normal the last time I was in Denver. Ever since then, I'd felt increasingly weak, with a racing heart and getting winded easily. Out of caution, my PCP gave me a referral for a chest x-ray at the hospital.

That night while Zooming with my writing partner, I felt my heart racing. I took my blood pressure, which was only slightly high, but my pulse was over 100, just sitting still, and my O2 had dropped to 90. We decided I should call the after-hours triage nurse. She told me to go to the ER, which I promptly did. Since I hadn't had time for the chest X-ray that afternoon, they did it then. It came back clear. The ER doctor hooked me up to a bag of saline and told me to sleep for a while. My pulse dropped closer to normal, and my O2 came back to 92. Finally, he told me to go home and rest.

I wrote an email to Dr Piquet that I'd gotten a biopsy, which made her happy, but my ER visit did not. She told me immediately to stop taking Dapsone, the antibiotic she substituted when she suspected Bactrim caused my polka dots. She explained that, rarely, Dapsone could prevent oxygen molecules from binding with my hemoglobin, which would explain my low O2 readings and weakness. I agreed and told her I continued to get more pink spots every day.

I spent Saturday resting, and I began packing my bags. Carolyn called and offered to pick me up again to drive me to Portland on Monday. I felt so weak that her offer gave me a flood of relief. At midday on Sunday, my heart raced wildly again, and my O2 meter reading had dropped into the high 80s. I'd heard people are not supposed to fly if their O2 is low, so I headed back to the ER again. I emailed Dr Piquet. She replied and asked me to have the ER doctor call her on her cell phone. While at the hospital, my oxygen level measured 92, and my red blood cell count remained below normal. The ER doctor sent me for a follow-up chest X-ray to rule out any oversights in the first examination. Again, it was clear.

The two doctors chatted and determined it should be safe for me to fly to Denver the next day. I went home and went to bed, hoping I'd have enough energy to make the trip.

I woke up early and finished packing my bags. I felt so glad to see Carolyn that morning. We schlepped my stuff down to her car and left for the airport. Monica met us at the curb. Thankfully, again everything went smoothly with our flight.

Seat Back Screen Showing Our Destination

With the extra day I had in Denver on 9/2, Monica and I splurged on scrumptious Denver Biscuit Company cinnamon buns for breakfast. She got up early to be the first in line to get two hot out of the oven buns. Hands down, they're the best in the world. I spent most of the day very quietly with my cousin Gayle, because I felt so weak. She taught me the strategic mind game, Wingspan, which we play whenever I get together with her. One game takes a couple of hours to play. Later in the day, Monica drove us back to our hotel. I felt so weary that I wondered if I'd even be able to do the walking tests the next day.

Fortunately, I slept soundly and woke feeling as if I had a bit more energy. Determined to be at my appointment early to make up for my prior visit's tardiness, we discovered that our appointment was thirty minutes later than listed on a page of instructions I'd received. My polka dots intrigued Dr Piquet. She wanted to get her hands on the biopsy report as soon as I got it. Otherwise, she found me quite healthy, so she attributed my weakness to the Dapsone antibiotic and assured me she felt confident I would soon regain energy as my O2 levels rose.

Since this visit was my Day 112, I'd hoped I could turn in great results for my walking tests. Rob appeared in the doorway of my exam room. "Hey Brenda, what am I today? Darth or Obi?" Grinning, I answered, "Today, you're just Rob."

"I'll take that." He smiled, pleased I had stopped with the name-calling. He and his wife had just gotten back from a trip to Boston, where he'd bought some taffy but said it didn't compare with Maine's. I warned all of them not to expect much from me on the walking tests. Dr Piquet and Sadie stood behind the 25-foot mark, next to the camera they used to video my test. At Rob's command of "Go," I took off, pushing myself as hard as I could. Rob announced my time, and amazingly it was only 1/10 of a second slower that I'd recorded on my previous test. I couldn't believe, feeling as weak as I did, I could still match my last time. Dr Piquet raised her arms, palms up, as if wondering what the problem was? They were all pleased.

I still had to get through (I hoped) the six-minute walk. I knew I had to get out of my head, where doubts threatened failure. In my mind, I created an image that I was strolling down a path through a garden filled with hundreds of species of colorful flowers. When Rob said, "Go," I started down the path, seeing brightly colored roses, gladiolas, hydrangeas, cosmos, and every flowering plant I could identify.

Flowers In My Imagined Garden

For three lengths of the long hallway, my pulse stayed calm, and my breathing, while stressed, stayed under control. At the end of the fifth length, I said out loud, "Oh my God, those chrysanthemums are gorgeous." No one could speak to me during these tests, so I wondered if they thought I'd begun to hallucinate.

Honestly, when Rob started the final 15-second countdown, I wasn't sure I'd get to six minutes. But at 12 seconds, I imagined myself lunging through the tape at the finish line of the Boston Marathon and just summoned the strength to do it. I immediately collapsed into an empty chair next to Dr Piquet, gasping, sweating, heart galloping for a few minutes. When I finally could speak, I told them about my strolling through a garden strategy to erase any doubts they may have had about my sanity. My distance walked had decreased over my previous time, but not by much.

Once I'd completed the walking tests, I went back to the exam room where they would draw my blood. This would break my previous record of 23 vials drawn at one time. They wanted 24 vials. I found it ironic, since they already knew I was anemic, that they would take that much more of my blood from me. But protocols are protocols, not to be broken. Finally, to celebrate getting through my appointment, we went for lunch. I'd been craving Chinese hot and sour soup, so we went to Chi Lin, a nearby restaurant. Though a human server took our order, I couldn't believe my eyes when an adorable robot brought food to our table!!!

Our Robot Server (A First for Me)

While enjoying our lunch, I got a text from Sadie saying, "I'm so sorry to have to tell you this, but one vial we used was the wrong one, so we need you to come back to the hospital and get that vial drawn." I threw up hands and moaned. Monica said if we had to do it we would! This time we had to go to the outpatient lab, where we stood in a long line waiting my turn. As it turned out, the missing vial was for my blood cell counts, a crucial bit of information in my case. That totaled 25 vials that day, bringing the cumulative number of vials drawn total 324, not including the vials drawn in the ER back in Maine.

I got into bed before sunset to get at least 8 hours of sleep before getting up, packing and being ready for our 7:30 am limo ride to the airport. Heading back to Maine, where I could sleep for three days, filled me with joy. Before we boarded the plane, I took advantage of going to the bathroom in the airport. The unique design of this one totally amazed me. In this picture, I'm looking into a mirror above a row of sinks that reflects the airport runways on the other side of a huge glass window. I couldn't resist taking a picture.

A Reflective Bathroom At DIA

At 4 pm, Carolyn pulled up to the curb at the Portland Jetport to pick me up and whisk me back to Belfast. We ate dinner on the way, so I could just relax at home. How comfortable my bed felt. Grateful for Carolyn's help, I asked her to accompany me on my next trip to Denver in November since Monica will already be back home and will meet us there.

I'm getting my energy back and walking about more. I don't even use a cane to walk around my apartment now. It's all coming back slowly. My O2 is back to a normal reading, and I'm feeling better every day. I've got an appointment with my dermatology doctor on Friday. I hope finally she'll have a diagnosis for my polka dots.

I hope you've had a less harried and healthier summer than I've had. Now it's back to writing. My audiobook of Becoming Amazed should be out on Audible in about a week. The book I'm writing with three other memoir authors, It's Never Too Late To Tell Your Story, is coming along beautifully, and should be complete near the end of the year. And I'm starting a first revision of my Stiff Persons Story story. Guess you could say I'm staying busy.

Warm regards,

Brenda