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Cancer Update: Treatment Is Working!

March 2, 2020 Featured, Steve Patterson Comments Off on Cancer Update: Treatment Is Working!

I first disclosed my cancer diagnosis last Halloween, on this blog’s 15th anniversary. Updates followed at the end of November and December.

To catch you up, I have stage 4 kidney cancer — which means it originated in a kidney but has spread elsewhere. I will never be cancer-free, treatments are about preventing the growth of tumors and further spreading.

My treatment isn’t chemotherapy or radiation, it’s immunotherapy.

Immunotherapy, also called biologic therapy, is a type of cancer treatment that boosts the body’s natural defenses to fight cancer. It uses substances made by the body or in a laboratory to improve or restore immune system function. Immunotherapy may work by:

  • Stopping or slowing the growth of cancer cells
  • Stopping cancer from spreading to other parts of the body
  • Helping the immune system work better at destroying cancer cells (cancer.net)

My treatments are two different drugs administered intravenously, one after another, now every four weeks. As part of a clinical trial I also take a 3rd drug orally every day — though it might be a placebo.

In early February tests revealed my first three treatments managed to stop the growth of my tumors. Today I’ll be back at Siteman Cancer Center, receiving my 5th treatment.

Side effects have varied, but minimally invasive. The worst has been increased fatigue. I’m fortunate to be on disability, not have to work. Initially I was too cautious, thinking I couldn’t do what I’d been doing. I’ve realized now that other than needing an extra nap, my life continues as before. My life just now includes one day with IV treatments every 4 weeks.

Reduced appetite is another, losing weight which is not something my doctor wants. I now eat throughout the day, every day. The dietician encourages me to consume as many calories as I can. This is the opposite of how I’ve been living in the 12+ years since my stroke. Last July, after a year of going to the gym, I managed to get below 200lbs. I went from being obese to overweight. Now I’m on the verge of going from overweight to normal weight.

I’m grateful for Food Outreach, where we get prepared food every two weeks. I still grocery shop and cook, but having frozen foods in small portions enables me to eat 5-6 times per day. I have salmon nearly every day now, a little too often.

When I’m at Siteman Cancer Center I’ve noticed just how busy it is. It’s clear that cancer impacts every part of society. Fellow patients represent all races, ages, economic classes, and geography — some drive many miles to be there, I take transit. We’re all treated equally, those with lots of money wait with a buzzer like the rest of us to be called back to a treatment pod.

Selfie on Saturday driving back home from a Target trip, the day after my 53rd birthday. I only drive about once a week.

Last month we did our annual trip to Chicago for the Chicago Auto Show, my first overnight travel since diagnosis & treatment. It went well enough I’m planning my first bucket list trip next month. In April I’m going to do a two week solo trip to Chicago with a side trip to Milwaukee, WI. This extended time will allow me immerse myself in Chicago and visit the state of Wisconsin for the very first time.

In Milwaukee I plan to see where a freeway was replaced by a boulevard, the Bronze Fonz, try their frozen custard, and ride their modern streetcar & a couple of bus routes. A future bucket list trip will include returning to Wisconsin to tour Frank Lloyd Wright architecture throughout the state.

My current treatment plan will continue as long as it is working. Once it stops, my oncologist will try another. In the meantime, I’m trying to enjoy the passage of time.

— Steve Patterson

 

Will Know In February 2020 How Well My Cancer Treatment Is Working

December 27, 2019 Featured, Steve Patterson Comments Off on Will Know In February 2020 How Well My Cancer Treatment Is Working
My favorite color is orange so I’m pleased with the ribbon.

This year, like most, has had ups & downs. The big downer this year was when I was told I have Metastatic Renal Cell Carcinoma, aka Stage 4 Kidney Cancer.

My two prior posts:

Today I want to talk about kidney cancer and treatments. When a person has a small tumor in a kidney (stage 1) the solution is usually to surgically remove the tumor. Unfortunately, kidney cancer is often hard to detect — so it spreads — metastatic or stage 4.

One of my kidneys is now completely tumor. We can live with one kidney but surgery would’ve delayed treatment. My tumors have been growing and spreading since my initial CT scans so further delay wasn’t an option.

I’ve had two treatments so far — the 2nd was on Monday. Side effects have been minor, mostly greater fatigue. My 3rd treatment is next month.

Chemotherapy, right? No. Radiation? Nope. Immunotherapy!

Wait, what?

Cancer treatments like chemotherapy and radiation use medications or high-energy X-rays to kill cancer cells. Immunotherapy is different because it uses your own immune system to fight off the cancer.

Some immunotherapy treatments help your immune system find the cancer or work harder to attack it. Others give you man-made versions of proteins or other substances to help your body fight the disease. Immunotherapy is a type of biologic therapy.

Immunotherapy is approved to treat certain kinds of cancer, including melanoma, lymphoma, and lung cancer. Immune-based treatments for many other types are being tested in clinical trials. (WebMD)

As chemotherapy has been ineffective with kidney cancer, I’m fortunate to be getting the latest in immunotherapy treatment. My treatment is two different drugs administered intravenously every few weeks. I’m also in a clinical trial testing a third drug taken orally every day. It’s a double blind study — neither I nor my doctor know if I’m getting the third drug or the placebo.

In February I’ll get another scan — our first chance to see how well my immune system has attacked the cancer. A good result will be either no growth or shrinkage of the tumors.

— Steve Patterson

 

Thankful For Modern Medicine — A Cancer Update

November 29, 2019 Featured, Steve Patterson Comments Off on Thankful For Modern Medicine — A Cancer Update
My favorite color is orange so I’m pleased with the ribbon.

At the end of last month, which happened to be this blog’s 15th anniversary, I also shared that I have kidney cancer.  See 15th Anniversary of UrbanReviewSTL.com; Future Uncertain Due To Cancer Diagnosis. 

Since then I’ve met with my cancer team (Oncologist, nurse coordinator, research coordinator, and social worker) twice. I’ve also seen a urologist, had a number of EKGs, cat scans, and an MRI. My blood has been drawn countless times.

The good news is my future is measured in years, not months. Stage 4 of cancer means it has spread beyond the original source. Mine is continuing to spread, though it hasn’t reached the brain — a place where kidney cancer like to go for. Whew.

A “tumor board” of doctors reviewed my case and the conclusion was rather than surgically remove my left kidney now I should begin immunotherapy and see how my tumors respond to treatment, hopefully stopping them from spreading further. I’ll receive my first treatment Monday, side effects are potentially similar to chemotherapy.

I’m taking part in a clinical trial receiving immunotherapy intravenously every 3 weeks plus a daily pill. Half will take a pill that’s helped with other cancers, the other half will take a placebo. Not even my team will know which group I’m in.

Despite the advancements in cancer treatments, my oncologist doesn’t think I’ll be ever be free of tumors. They hope to get my cancer to a point where it can be considered a chronic condition, giving me years of decent life.

When I had my massive hemorrhagic stroke in February 2008 I was certain I was going to die there on my cold floor. The one thing I didn’t do was suddenly become religious — yes, there are atheists in foxholes! But I blacked out so my time thinking about death was short.

Lately I’ve spent weeks thinking about death — my death. I’ve finally completed a  healthcare power of attorney. I’ve resumed working on the will I began in 2010. It’s still years away, but the clock is ticking.

Though some have suggested it, I’m still not turning to religion. Instead, I’ve looked to more enlightened views. One is the late Carl Sagan, who died at age 62 of cancer-related pneumonia:

As an atheist I don’t believe in an afterlife, so I don’t have a fear of it like people in this video.

Words and phrases I don’t use include:

  • Rest in peace (RIP).
  • He’s in a better place.
  • Meet his maker.

No rest, just dead. That’s it, finished. In 2010 I’d arranged to have my body donated to Washington University’s School of Medicine for research, so no body to deal with. No viewing, no funeral.

For me it’s important to make the most of my remaining years. For this I frequently turn to James Taylor’s words:

The secret of life
Is enjoying the passage of time.
Any fool can do it,
There ain’t nothing to it.
Nobody knows how we got
To the top of the hill.
But since we’re on our way down,
We might as well enjoy the ride.
The secret of love
Is in opening up your heart.
It’s okay to feel afraid,
But don’t let that stand in your way.
‘Cause anyone knows
That love is the only road.
And since we’re only here for a while,
Might as well show some style.
Give us a smile.
Isn’t it a lovely ride?
Sliding down, gliding down,
Try not to try too hard,
It’s just a lovely ride.
Now the thing about time
Is that time isn’t really real.
It’s just your point of view,
How does it feel for you?
Einstein said he
Could never understand it all.
Planets spinning…
See the video here. Though my life has been different than I imagined it would be decades ago, I’ve mostly enjoyed the passage of time.  I’ve got a list of future events I’m looking forward to:
  • January 2021: the 46th president being sworn into office (hopefully)
  • August 2023: my husband’s 40th birthday
  • June 2024:  our 10th wedding anniversary
  • October 2024: this blog’s 20th anniversary
  • February 2027: my 60th birthday
At this point I’m not optimistic about anything beyond those. That’s ok, even if I were to die tomorrow I’ve been happy with my life and my accomplishments. I’ve had more time than many.
Earlier this month Broadway star Laurel Griggs died of an asthma attack at age 13. Many St. Louis youth have died this year.  These young people missed out on so many experiences.
Apple co-founder Steve Jobs was just 56 when he died of pancreatic cancer. In 1989 comedian/actress Gilda Radner lost her long battle with ovarian cancer, she was only 42. Musician Bob Marley was just 36 when he died of skin cancer in 1981.
The next update will be at the end of December. By then I’ll have had two treatments and will know the side effects.
As the headline indicates, I’m thankful for modern medicine.
— Steve Patterson
 

15th Anniversary of UrbanReviewSTL.com; Future Uncertain Due To Cancer Diagnosis

October 31, 2019 Featured, Site Info, Steve Patterson Comments Off on 15th Anniversary of UrbanReviewSTL.com; Future Uncertain Due To Cancer Diagnosis
Me pre-stroke in the December 2006 issue of St. Louis Magazine. Photo by Dillip Vishwanat

I don’t normally post on a Thursday, but today is not just any Thursday.

It was 15 years ago today, Halloween 2004, when I registered the domain UrbanReviewSTL.com and began posting my thoughts on urban planning and architecture in the St. Louis region.

I initially began this blog to distract myself from my father’s recovery from a heart attack on the first of October ’04. I had no plan for longevity, I just needed something else to focus my attention on at the moment.

Within a few months I was the first openly-LGBT candidate for the St. Louis Board of Aldermen. I lost, but the experience was great and it increased attention to this blog. I was motivated to make a difference.

In 2006 my mom passed away, later that year St. Louis Magazine named me the 50th most powerful person in St. Louis. In these early years I posted about a variety of topics including buying/riding/parking a 50cc Hondas Metropolitan Scooter, valet parking, Loughborough Commons, etc.

In late November 2007 I moved into a loft in Downtown West, just as my father went into the hospital in Oklahoma City. On January 1, 2008 my father died. Within a couple of weeks I was driving a friend of a friend, and her two cats, to Providence Rhode Island. After a night there I spent a day & night in Boston, flying back to St. Louis from there. I didn’t know it at the time, but it would be my last walking/exploring trip.

On a cold & snowy Friday, February 1, 2008, I had a hemorrhagic stroke at home alone. It was 15-16 hours before a worried friend found me the next morning. After 3 months in 3 hospitals I retuned home on April 30, 2008. Read more on my post about the 10th anniversary of my stroke.

In the nearly 12 years since my stroke I’ve posted a lot about obstacles encountered while using my power wheelchair, my increased use of public transit, meeting & marrying my husband, etc.  I’ve been working out at the downtown Y (YMCA) and, between July 2018 and July 2019, managed to get below 200 pounds for the first time in decades — lost nearly 40 pounds in a year of working out. Felt so great to achieve that goal.

And now, the reason why the future of this blog is uncertain.

For a few years I’ve had an enlarged thyroid. Each year I’d go to the Center for Advanced Medicine (CAM) for a CT scan, once also getting a biopsy to test the tissue. Nothing.

The chest x-ray at my annual physical this year spots were seen that weren’t there last year.  My doctor thought it was cancer, so back to CAM for a CT. Yep, spots that weren’t there before. Next up was Barnes Hospital for a CT biopsy of my right lung. The results showed metastatic renal cell carcinoma (RCC) — kidney cancer that has spread to my lungs.  It might be another type of kidney cancer, but RCC is most common. Interestingly it’s unrelated to my enlarged thyroid.

My favorite color is orange so I’m pleased with the ribbon.

I meet with an oncologist next week at Siteman Cancer Center to discuss diagnosis and her proposed treatment plan. My plan is to continue posting four days per week (Sunday, Monday, Wednesday, and Friday), but I can’t predict how the cancer treatment will affect me. My research has shown a lot of drugs, combined with chemotherapy, have good success with advanced kidney cancer. I’m optimistic about my odds.

I’m still working out at The Y, still going about my life as usual. You’ll still see me out and about, but don’t be surprised if I begin crying — I have pseudobulbar affect as a result of my stroke. I greatly appreciate positive thoughts, well wishes, and such. However, please don’t tell me you’re praying to your deity on my behalf — that’s about you not me! When I was certain I was going to die while experiencing a stroke I didn’t suddenly cease being an atheist/humanist.

“Humanism rejects dependence on faith, the supernatural, divine texts, resurrection, reincarnation, or anything else for which we have no evidence. To put it another way, Humanists believe in life before death.”  ? Greg M. Epstein, Good Without God: What a Billion Nonreligious People Do Believe

Pray if you like, just please don’t think sharing that information with me will bring me comfort — it won’t.

So many blogs have come and gone over the last 15 years — it’s a lot of work so I understand why many ceased being published. I’ll post updates on my health on social media, and a post likely on Friday after Thanksgiving (11/29).

— Steve

 

Married In East St. Louis Five Years Ago

June 10, 2019 Featured, Metro East, Steve Patterson Comments Off on Married In East St. Louis Five Years Ago

Saturday was my 5th wedding anniversary, we spent the weekend in Chicago to celebrate. At the time we got married Missouri recognized same sex marriages performed in other states, but we couldn’t get legally married in Missouri. No problem, we just borrowed the St. Louis skyline as the backdrop. We had a great day and our wedding was inexpensive thanks to borrowed audio equipment and dear friends volunteering to help.  A beautiful wedding need not cost a fortune.

Our wedding was held at 9am at the Malcolm Martin Memorial Park in East St. Louis, Illinois — one of our favorite places.

We posed for a selfie with friend/officiate Chris Reimer (center) during the ceremony.

Chris read an appropriate paragraph from ‘Wild Awake’ by Hilary T. Smith:

“People are like cities: We all have alleys and gardens and secret rooftops and places where daisies sprout between the sidewalk cracks, but most of the time all we let each other see is is a postcard glimpse of a skyline or a polished square. Love lets you find those hidden places in another person, even the ones they didn’t know were there, even the ones they wouldn’t have thought to call beautiful themselves.” 

Friend Jesanka French read a poem she adopted from Edward Monkton’s Lovely Love Story
Friend Dionna Raedeke sang ‘The Very Thought of You’
Here we’re smiling in the back seat of a new friend’s Tesla. She drove us carbon-free from the wedding in East St. Louis to the brunch reception in South St. Louis
Arrived at Bevo Mill

Our guests paid for their own brunch. In the 5 years since our wedding the building was purchased, renovated, reopened as Das Bevo, then closed except for special events. Plans to have a few guest rooms upstairs never materialized, we’d hope to spend the night there on our 5th anniversary.

It amazes me how quickly times goes by.  I’ve lived in St. Louis almost 29 years, this is the 15th year of this blog, it has been over 11 years since my stroke. And something I never thought possible when I was younger — I’ve been legally married for 5 years! Speaking of time passing by quickly, today is my oldest brother’s 69th birthday.

So many great memories of our wedding day, thanks to our friends & family for attending & helping.

— Steve Patterson

One of the songs we played before the ceremony:

 

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