Goodbye, Chicago. Hello, Birmingham
Going forward, I may try dividing posts into medical and personal sections. This should make it easier for people who are just interested in the ICT-107 trial.
Medical
I had my final Chicago treatment visit. Blood tests were fine. I got the vaccine injections. They caused the same flu symptoms, which Tylenol helped alleviate. We thanked Liz and Dr. Aiken for their wonderful care and attention. My case is being transferred to the University of Alabama at Birmingham comprehensive cancer center because Chicago is too far away, too expensive and too cold. My first visit to UAB will be for my second MRI.
In front of Chicago Tribune building.
Personal
We flew to Chicago on Christmas Day (Sunday). It’s a great day for travel — most people are at home.
My appointment was on Tuesday so we had all day Monday to explore the city. Unfortunately everyone else had the same idea. We tried to see the Dr. Seuss exhibit at the Science and Industry museum, but it sold out as we waited in line. So we went to the Art Institute of Chicago instead. It was inspiring for me. I hope to get into the studio soon for some painting.
Another big stop of the day was a visit to Pastoral to sample and buy artisanal cheeses. For my foodie friends, I was excited to buy a limited-production cheese I had been wanting to try for years — Upland Cheese Company’s Rush Creek Reserve.
We ended the day with a fantastic meal at our favorite Chicago restaurant, North Pond. I loosened the reigns on my self-imposed dietary restrictions so I could enjoy the seasonal tasting prix fixe menu with wine pairings!
Dinner at North Pond Restaurant
I’ll miss the culture, architecture, food, art and vibrancy of Chicago but I’m ready to move on. I haven’t visited Birmingham in a long time. So I look forward to checking it out again. But mostly look forward to all the friends I can reconnect with who live there or nearby.
Extended Phase, Month 1
My first week of double-dose chemo went well. I did not experience any ill effects.
The follow-up blood results also showed that the chemo did not significantly knock down my blood cell counts.
The only thing that has changed from my regular regimen of nutritious eating and healthy living is that I’ve continued riding a bicycle regularly. It is quickly improving my endurance, stamina and energy level.
Tina and I will spend Christmas day traveling to Chicago. We will spend the next day having a last hurrah in the city. The next day will be my final visit to Rush University Medical Center before we transfer treatments for the next year to Birmingham.
I'm getting good at growing sprouts and wheatgrass.
Beautiful mid-December day. I can't ride my motorcycle yet, but I can share a fire with her.
Let the Extended Maintenance Phase Begin
Chemo Time
Today I rehash my relationship with chemotherapy (Temodar). It’s difficult to embrace taking chemo because it might be beneficial for me, but it could also leave me weakened and hurting.
I start chemo tonight before bed. I will take a dose double that which I took previously. I take it for five consecutive days at the beginning of every month for the next 12 months.
Cross Training
The weakness/soreness is my knee is probably from de-conditioning rather than treatments, so part of my next-phase regimen is to increase my physical activity as I enter this new phase of treatment. Yoga, weight lifting, old-school calisthenics and biking (bicycling, that is).
I haven’t been on a bicycle in… possibly two decades. I dusted off an old ten-speed this afternoon and went for a short ride through my hilly neighborhood. Let’s just say, I’ve got a lot of work to do to get back into shape. My quads got sore; my heart beat fast; I’m tuckered out. But it feels good, and it was fun. (Not as fun as the motorcycles, but better for my health.)
Tail of the Dragon at Deal's Gap (US129), NC, 2007
A Conversation with Mila
No updates here. Only a daydream.
“Doctors know the best answers for problems. And they’ve studied your disease for decades — centuries even. It’s best to do what the doctors dictate recommend. Quit rebelling.”
These are probably the thoughts I would contrive if I tried to imagine reassuring Mila that the Albuterol is necessary for her well-being, as I forcibly “apply the mask to her muzzle and ensure an effective seal.”
Mila is our cat. Eight to 12 breaths, twice a day — every day. Mila does not like her treatment.
She runs away and tries to hide. Once captured, she tries to evade the mask, but she’s no match for my strength (and wisdom). Yet she still resists. She holds her breath, but eventually has to concede. She tries to fake me out by acting compliant, then suddenly yanks her head back in an attempt to escape. Resistance is useless.
We have noticed that her asthma does seem to be quelled since using the feline inhaler. I think she knows we are trying to help her. She often purrs afterwards.
But she always tries to resist. Over the years, we’ve broken her spirit a bit. (I mean, we’ve convinced her we know what’s best.) Since she knows it’s inevitable, she resists a little less.
I can imagine Mila asking me,
“Well why are you questioning taking chemo? Doctor’s say it’s time to double the dosage, so do it. I mean, who are you? You read a few books and watched some videos. You think that qualifies you to question the Standard of Care approved by the FDA? You do want to live an extra six months, don’t you?”
Like Mila, my instinct is to resist or at least seriously question this “answer” of what is best. Maybe Mila, like me, is not convinced that the prescribed treatment is the best.
“Is this helping more than hurting? Is it really helping at all? Why am I having to deal with this?”
These are the questions we might ponder tonight as we share a bowl of (sugar-free) ice cream.
Pickles
Epilogue
Despite living under the same roof as Mila and I, Pickles hasn’t seemed to learn a thing. She continues to live recklessly. She stays out late; eats red meat (mice); strolls across the street; scratches furniture; drinks too much (milk). Maybe it’s genetics, or luck, or nutrition, or karma, or activity level, or God’s plan, or state-of-mind.
Who knows?
Ways to Help
Your thoughts, well-wishes, encouragement and positive vibes are a big help. Financial donations to my fight are welcome as well. Please visit my Donate page for an explanation of how and why donations are helpful.
Meal Train
Sign up to bring us a meal via Meal TrainMEALTRAIN WAS A VERY HELPFUL RESOURCE FOR US BUT NOW IT HAS EVOLVED INTO BRINGING US SPECIFIC UNCOOKED INGREDIENTS BECAUSE of the wtict diet we are on.This is just as valuable to us though..
A glioblastoma journey 