The Aftermath

I honestly don't know why I expected miraculous results in the immediate weeks after my T cell infusion. My own wishful thinking, I suspect. Dr Piquet warned it would take a while to feel my normal self again. She told me, "You'll have good days and bad days during your recovery." No one hinted that I'd have days when I'd want to do absolutely nothing, or when I'd sleep ten hours at night, wake up for an hour to eat a small breakfast and then promptly fall back asleep for 2-3 more hours. Most nights I'd climb into bed two hours before the sun set, exasperated that I couldn't keep my eyes open one minute longer. I haven't even had the energy to send out a blog for two weeks, prompting several friends to email or call me to see if I still inhabited the earth. The guilt caught up with me, so here's my feeble attempt to say, "Yes, I'm alive and thank God that Monica has been doing so much to help me."

May 29th - Released from Hospital

By the 10th day of being restricted to my room's alarmed bed and chair, I couldn't wait to use my get out of jail card. Forget taking a stroll down Boardwalk or visiting Park Place, I only wanted to cross the street over to the Hyatt House and check into my non-sterile comfy hotel room. True, I forfeited the 11th floor expansive vista of the Rocky Mountain range through my hospital window, but I could get in the car with Monica to do some exploring outside. The first few days after my release, I had a fair amount of energy and motivation, which I used to go out for real food. The discharge nurse went through the list of foods they forbade me from eating until my absolute neutrophils increased. This included almost everything raw, (meats, fish, vegetables and fruits, unless we could peel them) Also any unpasteurized foods and anything in a deli case.

Of course, I'd been dreaming of a huge green salad loaded with raw vegies and cheese drenched in blue cheese dressing. Or a huge serving of creamy coleslaw! Instead, I settled for two Argentinian empanadas; one mushroom with onions and mozzarella and the other spinach with mozzarella and bechamel cream sauce. We ate in the car, because the medical team wanted me to stay away from crowds. Afterward, we got all my possessions tucked back into the hotel. I watched the news and climbed into bed.

May 30th - Enjoying the Warm Weather

Monica had an early morning doctor's appointment, so we woke, dressed and left for her doctor's office. Located in a beautifully landscaped office park, I sat in the car with my door open and enjoyed the lovely birdsong wafting on the fresh breeze and the sun's rays warming the skin on my arms. Being in nature made me feel alive again. After her appointment, Monica drove us to one location of the Denver Biscuit Company, where we ate breakfast. One half of a gigantic glazed cinnamon roll with a tall glass of sweet tea served as an ample meal.

When at home in Littleton, Monica walks around nearby Hine Lake a few times every morning. I wanted to see where she walked and perhaps Zinger around it with her. We drove to the lake (more like a pond than a lake) but the sun high overhead warmed the air to an uncomfortable 88 degrees, especially for Monica, who wore a black fleece jacket. As we circled the lake, we noticed a few groups of men fishing, and passed other walkers, some being led by their dogs. We completed half a circle when the concrete path descended to shore level and became gravel. Since my Zinger doesn't work well on gravel, we turned around. I pushed my Zinger back up the slope. The effort of climbing the slope left me breathless, but I'd accomplished a task I'd never have been able to do in the last few years!

Resting in the shade at Hine Lake

Luckily, the shade of trees surrounding a community playground gave us a place to rest for a bit before making our way back to the car. While resting in the shade, an unusual design in the bark of one tree caught my attention. It looked like an owl staring at me.

Owl's Eye

Denver has turned so lush and green since my first visit back in March. Then the pallette of the landscape featured browns and grays dotted with dried clumps of golden grass. In March, meteorologists warned of serious wildfire watches (and some wildfires) across the eastern plains. Now the warnings from the weather forecasters are for tornades and hailstorms. After our visit to Hine Lake, we drove by Monica's house to admire the flowers lining her driveway and backyard.

Monica's Peonies and Irises

Since we ate breakfast early, we decided to check out a restaurant called North County.

They had a lovely open-air patio and a delicious bowl of cilantro lime rice, beans, corn, cotija cheese, avocado, and grilled shrimp. Everything tasted so good after the hospital offerings.

Grilled Shrimp Cilantro Rice Bowl

May 31st - Ups & Downs

I woke up in the middle of the night with quite a cough. Since I sleep with a CPAP, and I hadn't been able to wash it at the hospital and the hotel sinks are too shallow, I worried I needed to clean it and change the filters. I spent an hour in the middle of the night slowly and carefully washing every piece with dish detergent and thoroughly rinsing each with clear water before drying them. When I put it back on, I went soundly to sleep and never coughed again.

The next morning, I woke up to the tragic news that a Penobscot Shores friend had passed away. I felt so sad but I got up and sent a sympathy card to his wife. One of my best friends, Karin, who lives in California, also celebrates her birthday on Memorial Day. So I sent a digital card off to her. And shortly later I got an email saying another Penobscot Shores friend was headed for emergency surgery that day. Later that day, I discover two cousins were having unexpected surgery that day too! Wow! What a busy day!

Weather-wise, it couldn't have been a more lovely day, so Monica decided we should have lunch at one of her favorite restaurants, Grammy's. We ate in their open-sided tent. They specialize in Italian home cooked comfort foods. I got creamy Alfredo with grilled shrimp on linguini with a fist-sized garlic knot. As fantastic as the Alfredo tasted, the thing that really tingled my taste buds was a blue raspberry Italian cream soda. It made me such a happy girl.

Blue Raspberry Italian Cream Soda

June 1st - Monica's home cooked meal

Since I had no hospital appointments today, I slept late, missing breakfast at the hotel. I didn't mind a bit because Monica had promised to cook lunch for me at her house that day. We went to Costco so Monica could get fresh Dungeness crab, perfect stalks of spring asparagus and a mixture of vegetables to cook in the air fryer. I relaxed while she cooked, watching a tiny bunny hopping around her backyard. The steamed crab dipped in melted butter hit the spot while the veggies served as the perfect accompaniments.

To get into and out of Monica's house and move between levels, that day I tackled 23 stairs. That exercise nearly did me in. On the way back from Littleton to Aurora, we drove through a severe rain storm with lightning and small pebbles of hail. The storms out here are spectacular! I only had enough energy when we got back to the hotel to take my night medicine with some applesauce.

June 2nd through June 10th - Lethargy and Fatigue

That night I slept poorly. I had an electric bolt shoot down the side of my right leg. The pain persisted for about 20 minutes. Additionally, I had a nasty headache and tight neck muscles. The trial team insisted I not take Tylenol, because it could mask a fever. I remained at risk for neurotoxicity and seizures, so I skipped the Tylenol, tossing and turning all night until I needed to get up and get ready for a morning hospital appointment.

The following week, I fell into a period of fatigue and lethargy during which I slept or napped whenever I wasn't at the hospital or eating. One night I slept for 14 hours straight. I couldn't understand why I seemed to be regressing. The medical staff all assured me this was a normal, expected part of the process. But, after all I'd been through already, surely I should at least feel better than when I started the treatment.

Since being released from the hospital, the terms of the trial required me and Monica to stay close to the hospital for another 18 days to be near help should I run a fever, show signs of confusion (not know where I was or be unable to write a sentence) or have a seizure. We also had to go back to the hospital every three days for checkups and blood draws. My lab tests all looked great, they said, with most of my enzymes and minerals returning to the low end of the normal range. For each blood draw, the nurse would fill between 11 - 17 vials of blood from my port. As long as they got the needle squarely into my port, the process was painless. One day, when they needed to fill 17 vials, the blood flowed well through the tubing, to fill the first 16 vials, before suddenly stopping. I kidded, "What did you expect? You've taken every last drop of my blood."

The group of nurses tried flushing the port several times with saline, but no luck. They theorized that a small blood clot had formed inside the port chamber. They could still inject fluids in through the port, but blood couldn't flow out. Next, they tried flushing the port with clot-busting heparin. Still no sign of blood. They eventually drew the final vial from a vein on the back of my hand. "What about the next time?" I asked. "Will you be able to use my port?"

One of the nurses answered, "You have a few days for the heparin to work to clear any clots, so everything should be good to go by then."

Three days later, when the nurse accessed my port, the saline flush worked perfectly, but not a drop of blood flowed back through the tubing. The group of concerned nurses tried every trick they knew: having me cough, raise my hands over my head, having me lean forward, leaning me back, another flush of heparin, wiggling the needle in the port. No blood! They had 16 vials to fill. They gave me a choice of getting a heavy duty clot buster and waiting for an hour for it to work or filling the vials from a vein in my arm. Yow! I chose pain over wasting time. After they'd filled the vials, they injected my port with the Alteplase so it could begin working to break up the port clot.

The next time I had to have blood drawn, my port worked like a charm. Hopefully, it will work from now on. As of my last blood draw, cumulatively 243 vials had been taken from my body!

Dr Piquet arranged for me to have Physical Therapy sessions twice a week. So I spent some time nearly every day back in the hospital. My lovely PT, Wendy, a faculty member at the University of Colorado, had my other PT, Darth, as a student. Through massage, she worked out the knots in my legs, stretched my muscles, and helped me practice walking. She's taught me tricks on how properly to use my cane, regulate my breathing, look straight ahead rather than down, all to prepare for my 6 minute timed walk on the 16th. Wendy encouraged me during our practice walks, whereas Darth can only announce the minutes as they elapse per the trial protocol.

I did a few other things amidst my week of lethargy. The new season of one of my favorite History Channel shows, The Secret of Skin Walker Ranch, began on June 3rd. Luckily for me, it started two hours earlier here in Denver, so I barely stayed awake for it. Another day, I visited my cousin Gayle, who also lives in Littleton, to have lunch and play games. On the 7th of June I watched CNN's live broadcast of George Clooney's Broadway show Good Night, Good Luck. Then the next night I watched the Tony Awards. Other than that, Monica went out to get much of our food that week and brought it back to the hotel. Some days I had a little energy, others I felt pretty useless.

Finally, about two days ago, I woke up feeling more energetic than I'd felt in a while. Monica drove me to cousin Gayle's house in Littleton. Her sister, Suzanne, had just arrived from Kingman, AZ in time for a Father's Day visit with their 100-year-old dad, my uncle Tom. I'll be spending some time with my cousins during the next two days and visiting Uncle Tom with them to celebrate Father's Day. I'll also hope to fit in a few games of Wingspan with them.

Cousins Gayle, Brenda and Suzanne

June 16th - The Golden Brick Road

It's amazing that I will reach the final day of this phase of the trial on Monday. It's a big day with big expectations. I will get my final blood draw for now, which will put me over 250 vials. I'll see Dr Piquet for a neurological check and get my marching orders for the next nine months, including 5 more trips back to Denver. PT Darth will measure my walking progress along the golden brick path; this measurement will determine the trial's success.

If I can ask you one big favor - please send me all your healing thoughts and vibes on Monday. With your help, I hope I can conquer this walking test.

Much love to all of you!

Brenda