The Bad News and the Good News
- Brenda Smith
- Mar 30
- 11 min read
Why do I feel so bad?
At the end of my last blog, I felt pretty lousy. Monday, I decided to stay in the hotel to head off whatever might be trying to invade my throat, head, and lungs. Although the hotel doesn't permit guests to take items from the hearty breakfast buffet up to their room, I convinced Alex, the front desk manager, I would be doing no one a favor by eating with other guests in the dining room. My cough served as a dead giveaway that I was sick, so he allowed me to box up my breakfast and take it to my room.
Whenever Alex saw me, he handed me two bottles of water and a tube of skin moisturizer. That entire day I rested, sucked on lozenges, slurped cough syrup, and drank several bottles of water. I napped for hours. I also took off the heart monitor after three days as I'd been instructed, packaged it up and took it to the front desk to have them mail it back to the manufacturer.
For dinner, I went in my Zinger along the sidewalk behind the hotel to a ground level restaurant called Modern Market and bought a healthy Buddha bowl with spicy Tofu, and portions of raw and roasted vegetables to go. On the way back, I noticed a few trees bordering the rear parking lot had started to bloom. TA-DAH! Right then, I knew what had gotten me. The pollen being shed by a variety of trees and shrubs in Colorado had attacked my defenseless body, causing a whopper case of allergies. I googled the differences between allergies and head colds. The information I found about allergies pointed directly toward my symptoms.
This had happened to me once before. Returning to Massachusetts in spring, after four years of living in the arid dry climate of Pakistan, the onslaught of familiar pollens I'd grown up with caused a sudden violent reaction I'd never experienced before. My body had become desensitized to New England allergens and sensitized to the ones in Pakistan. Like then, every part of my body felt depleted. I went to bed very early for the night owl I am.
Tuesday morning, honestly, I didn't feel much better. Though my throat no longer felt scratchy, my cough seemed worse. And I frequently had to blow my nose. When Monica checked in with me by phone, I told her I needed another day of rest. It worried me I only had two days to get rid of these allergies. I got another breakfast to go, then sat still self-medicating most of the day. Around supper time, I made another dash to Modern Market. I got a Green Goddess Shrimp bowl. Monica called with a suggestion. "Tomorrow the weather is going to be a glorious, so if you want to go to the mountains, we should go then." I told her, "Let me get to bed early. I'll text you how I feel as soon as I wake up."
Off to the Mountains
After two days cooped up inside the hotel, I knew getting outside would be good for my mental health. Monica wanted to get an early start since we'd have a two-hour ride each way. I felt a bit better when I woke up, at least until I checked my email. Dr Piquet had left a message saying that the heart monitor results came back fine. Yay! However, the spot of melanoma removed from my ear two years ago presented a problem. The criteria for the trial excluded anyone with an "in situ" cancer within the previous five years. Technically, I didn't qualify.
I'd specifically told Dr Piquet about my melanoma during our initial conversation weeks prior to my trip to Denver, so why only now, mere hours before my apheresis, was she telling me I was excluded? Frustrated and angry, I continued to read the email. Dr Piquet explained she could request an exemption, but she would need all my medical records documenting the surgery, results, and follow up. I groaned. This could take hours to get resolved.
Between the files I'd saved on my computer and the records I could access from my health portals, it took less than an hour to find (1) a description of the biopsy procedure, (2) the lab results showing the successful removal of the "in situ" cancer, and (3) a letter from my dermatologist to my primary doctor stating that all the cancer had been removed. I attached them to a reply e-mail, hit send, and prayed this information would be enough to build the case for my participation.
Twenty minutes later, Dr Piquet emailed again. She thanked me for the information I'd sent, but she needed to get the dermatologist's clinical notes from the last visit I'd had with her a month before flying to Denver. Growing more frustrated by the minute, I dialed the number for the dermatology office to request that information. Rarely do I get a live person to answer the phone when I call their office, but the fates smiled on me that morning and their receptionist answered the phone. She quickly pulled up the notes and faxed them off to Dr. Piquet along with the phone number for my dermatologist. I'd given her everything that existed concerning my melanoma. Now I wanted nothing more than to flee to the mountains.
I'd called Monica to let her know about this glitch. We got a slightly later start than she'd hoped. She could gauge how upset I felt from my grumpiness. But her wise words calmed me with positivity. "You've done all you could possibly do. Things are going to work out fine. Look at how much money the biopharma sponsor has already spent. They aren't going to kick you out now! Besides, it sounds like Dr Piquet is going to fight for you."
We headed to the front range of Rocky Mountain National Park via Estes Park, home of the historic Stanley Hotel at an elevation of 7,500 ft. Monica's weather prediction proved accurate.
For days the wind had howled, stirring up dust, smog and pollen, creating an opaque haze between Denver and the Rockies. Today, the cleanest air since I'd been
there gave us an amazing view of the brilliant white mountain tops against a cloudless deep blue sky. As we left Denver's sprawling metropolis behind, our drive took us northwest through vast plains dotted with straw-colored shrubs and plants. For much of my time in Colorado, meteorologists posted an extreme wildfire watch for the area. With raging winds and the abundance of dry tinder, even the smallest fire could become catastrophic! We passed through Boulder and drove by the architecturally attractive campus of the University of Colorado before turning west to wind our way up through a narrow canyon toward Estes Park, where we'd stop for lunch.
Monica is a foodie and knows where the best food can be found throughout Colorado (and the US). She chose Smoking Dave's, a rustic place serving exceptional ribs. We both got four rib plates with two sides and cornbread. I could only eat two of the gigantic ribs and my sides, a cheesy corn casserole, coleslaw and the cornbread muffin. The other two ribs went in a doggy bag.
Monica devoured three ribs, sweet potato fries, part of her corn casserole and her muffin. With bellies full, we headed to Rocky Mountain National Park.
At the entrance gate, Monica convinced the park ranger that I had a handicapped National Park pass stowed in the glove box of my car back in Maine. I do. He believed her and let us in for free. We could only proceed on the Trail Ridge Road for 7 miles before it closed because of snow. But in that seven miles we climbed to above the snow line to10,000 feet in altitude.
The fresh air and spectacular vistas inspired me. The sun warmed me so much that I kept shedding clothes. Though the temperature in Denver reached a near record 75 degrees, it registered only in the high fifties where the road stopped.
I had this crazy idea to stop and make a snowball from the snowbanks lining the roads. Monica, happy to oblige my quirky desire, took a picture of me grinning with my coveted snowball.
During a stop at one vista point, we met an older lady with binoculars around her neck. I asked, "Have you seen anything interesting today?" She replied, "Well, there's a herd of elk quite close to the road." We got directions to where we might find them and headed off in pursuit. They weren't hard to find as several cars lined both sides of the road, while people with cameras shot photos of them with cameras. It tickled me that the big guy sat resting on the ground while the ladies smartly lay on a patch of snow to stay cool on this warm day.
Finally, we needed to start the return trip back to Denver. Being outside in this wilderness area had calmed me down. I was in my element in a placed I never dreamed I could go again. What a gift I'd been given!
We still hadn't heard back from Dr Piquet, so Monica said, "You know, no news is good news. If we don't hear anything from Dr Piquet, we'll just show up for your appointment tomorrow."
The Bad News
An hour from Denver, my cell phone rang. I heard Dr Piquet say, "I'm afraid that we won't be able to go forward with your apheresis procedure tomorrow." "Oh, no," I uttered, the dejection evident in my voice.
She explained she'd tried calling the dermatology office four times that afternoon to get two questions answered: the stage of the cancer and the likelihood of its reoccurrence. She'd not heard from my dermatologist and by now offices on the East Coast were closed for the day. Panic set in as I realized all of this trip might be for naught, shattering my dreams of being able to walk again and to enjoy a few more years of normal life.
Dr Piquet asked if it would be possible for me to stay until Monday, which would give her another day to close the loop with my dermatologist. I said I'd stay as long as it took, but it would screw up the carefully orchestrated travel plans not only for me but for the travel companion accompanying me back to Maine. I told her I didn't have it in writing, but my dermatologist told me I didn't have to worry about the melanoma coming back on my ear. She asked me to try to get my dermatologist to call her on her private cell as early as possible.
What a mess! After we hung up, I googled stages of melanoma. I found a reference in the National Cancer Institute's Glossary of terms that specifically stated that "in situ" when referring to melanoma was considered Stage 0. It meant all the cancer cells had been removed, so I was cured. I quickly sent this information to Dr Piquet.
Monica tried to cheer me up, saying she would fly back to Maine with me whenever if it came down to that. Neither of us believed I would get thrown out of the trial for such a trivial concern, especially given all the testing and other forms of qualifying I'd been through and the cost of that to the sponsor. But would Dr Piquet succeed in making her case to include me?
The Good News
Just as we got to the hotel, I got a text from Dr Piquet. "I was pushing on the sponsor a bit. Sounds like we may be able to move forward tomorrow. I still need to get back to your dermatologist, but maybe able to at least initiate the procedure." Another text about an hour later said, "As of now, we are planning to proceed with apheresis tomorrow. Please see if you can get your dermatologist to call me early in the morning."
Sitting at my computer, I drafted an email to my dermatologist begging her to call Dr Piquet first thing in the morning. Finally, at 9 pm, another text arrived from Dr Piquet. "We are moving forward! Get some rest and I'll see you tomorrow!"
I'd averted a nervous breakdown, but the stress of not knowing whether or not I would get apheresis had stiffened all my muscles and sapped my energy. I let Monica know we needed to be at the hospital at 7am, then I ate my two left over ribs and tumbled into bed. I slept fitfully, paranoid that some other issue would sneak in to eliminate me from the trial.
Monica picked me up, so we arrived at the apheresis unit a few minutes early. The prep for the procedure took about an hour. Both Dr Piquet and Sadie, a research assistant, arrived with a slew of questions for me to answer (for the third time). I frowned when I saw another tray of empty vials brought into the room. When I asked how many, the nurse said she couldn't count that high. She finally fessed up that they had taken 24 vials. Several nurses attended to me. Even the doctor in charge of the unit paid me a visit.
Apheresis is the procedure for taking blood from one arm, running through a machine containing a centrifuge that spins blood into different layers based on density. It extracted the layer containing my immune T cells, while the remaining blood returned to my body through the opposite arm. The machine right behind Monica is the mighty magical contraption. Once they had enough T cells, they drew four more vials of blood to be sure my body chemistry was stable. That took an extra 45 minutes. They found my potassium level was low, so they gave me two huge pills to swallow with my lunch. Another medical person arrive to collect the bag with my cells, which she would freeze to -190 degrees for shipping to the lab in California the next day. The total cumulative count on vials collected stood at 69.
We were both hungry and ready for a hearty lunch. Monica, of course, knew the perfect place. At Grammy's Goodies, I feasted on their lasagna made famous by Guy Fieri's visit for his show Diners, Drive-Ins and Dives. Monica had an amazing Italian sandwich, which I look forward to trying when I go back to Denver. I only could eat two-thirds of my meal and Monica only ate half her sandwich. Great tasting food for really reasonable prices.
After lunch, I went back to the hotel to get packed up for the trip home. Our flight would depart at 6:20 am, with a pick-up from the hotel at 4:00 am. So I set my alarm for 3:00am. UGH!
Jenny, who accompanied me to Denver, arranged for her friend,Toni, who lives in Fort Collins to be my travel companion back to Maine. She arrived that afternoon and we planned for her to meet me at 3:30 am to help get my baggage down to the lobby. The drive to Denver International Airport took about a quarter of the time it had taken to go to the hotel when we arrived.
We arrived at our gate at 5:05 before the gate personnel got there. I felt so happy to get into the CAR-T trial and now happy to be headed back to my Belfast home. The two weeks and cross-country travel had exhausted me, perhaps more than I'd ever been. Honestly, I'd accepted my world had shrunk to existing inside my apartment with numerous medical visits to the nearby hospitals. My fun play days were long gone. My lightweight battery powered Zinger chair enabled me to do many things I hadn't anticipated, including covering long distances within the airports and in the enormous medical buildings on the Anschutz campus. In short, I proved to myself I still had some vigor left in me. I'm thrilled to see what the results of the reengineering of my T cells will mean for me.
As our flight taxied down the runway, Toni took this beautiful sunrise photo. To me, it symbolizes hope. A new day is dawning. I couldn't have asked for a better travel companion than Toni. Our flights arrived on time. I watched an old movie that I'd had on my must watch someday list. The Motorcycle Diaries chronicles the early days of Che Guevara as he and a buddy attempted to travel the length of South America on a well-worn motorcycle. I loved it.
This is just the start of the medical trial. Tentatively I'll be returning to Denver around May 10th accompanied by Monica for 33 days. I'll keep blogging but they may not be as frequent as they've been until I get back to Denver. I hope you'll keep taking this greatest adventure of my life with me.
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