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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:

 

I’m In A Very Good Mood

March 25, 2019 Featured, Steve Patterson Comments Off on I’m In A Very Good Mood

Lately I’ve been in an especially good mood. It’s Spring. I’m enjoying exploring and researching my new neighborhood. And finally, I have my power wheelchair back. 

My wheelchair after being delivered early this month.

In the Summer of 2015 my 7-year old wheelchair had a problem unlike it had experienced before, it appeared to be an electrical short somewhere. It wouldn’t come on at all.

The company that sold & serviced the chair brought out a loaner and took mine to their facility for repair. Within a few weeks they delivered it and took back the loaner. I immediately go in the chair and went out for a spin. I broke down a couple of blocks away, I had to release the drive wheels and push it back home. Very unpleasant.

The company brought back the loaner chair and took mine back for repair. Again, that was the Summer of 2015.

The loaner wheelchair was lighter, slower than mine, but I got used to it. I gave up bugging them about repairing my chair. I had them out in January 2017 to replace the batteries & tires  on the loaner chair.

When they came out this January to do the same is when they realized I still had a loaner since 2015 and that they still (hopefully) had my chair.

By this point the batteries in the loaner chair were two years old, they’re usually replaced annually. Medicare covers most of the cost, but my co-payment isn’t insignificant.

I could get to the downtown YMCA, where I’d charge it while working out. This required me to lug around an external charger. Then I’d go to Culinaria where I’d need to charge it again, though not as long, to be able to get home.

Even when the batteries were new it just didn’t have the distance of my chair. I had the loaner for at least five trips to Chicago. Unfortunately I had to limit my pedestrian activity, reply more on transit, and keep charging while out.

I think I’ve only been to the Missouri Botanical Gardens once with the loaner, we had to get lunch afterwards in their cafe so the chair could recharge, it wouldn’t have made it as far as the bus stop on Tower Grove Ave otherwise.

In the weeks since my wheelchair was returned I’ve been able to go to the YMCA, Culinaria, and back home all on one charge. I’ve gone out exploring on my own, plus my husband and I went out Saturday for a mile plus journey.

Increased mobility really does increase happiness!

— Steve Patterson

 

Now Living North of Delmar in Columbus Square Neighborhood

January 14, 2019 Featured, North City, Steve Patterson Comments Off on Now Living North of Delmar in Columbus Square Neighborhood

A week ago I shared that we moved, leaving the Downtown West neighborhood. I’m happy to report that I’m once again living north of the Delmar Divide. I’ve told the following Delmar Divide story before, but it has been a while, so it’s worth repeating:

When I first moved to St. Louis in 1990 I rented an efficiency apartment on Lindell in the Central West End, I was 23. The apartment manager was a childhood friend of the mom of a friend I’d met in college, the two women grew up in the 1950s near O’Fallon Park in North St. Louis.  The manager, looking out for her young new tenant from Oklahoma, advised me: “don’t go north of Delmar.”

My 3-room flat in Old North at 1422 Sullivan, 1991-1992

I’d just moved to St. Louis after falling in love with the street grid, substantial architecture, and tremendous potential — I had to see this forbidden part of the city where I shouldn’t go.  I fell in love all over, marveling at the beauty being abandoned.

After 6 months in the CWE I moved to a 3-room flat in Old North St. Louis (then called Murphy-Blair). I still have friendships with neighbors from time, and lots of fond memories.

Years later I’m living in my 7th St. Louis neighborhood:

  1. Benton Park (couple of weeks in Aug/Sept 1990)
  2. Central West End (6 months 90-91)
  3. Old North St. Louis (3+ years  91-94)
  4. Dutchtown (9+ years 94-03)
  5. Mt. Pleasant (4+ years 03-07)
  6. Downtown West (11+ years 07-18)
  7. And now: Columbus Square  (19…?)

My friend Mark Groth blogged about the Neighborhood in March 2010, with lots of photos showing the various developments. He concluded his post this way:

Frankly, this is not a neighborhood that overly inspires me, nor one I would take someone from out of town to showcase the city.  I’m just not into 1980’s architecture.  However, if you are interested in the history of public housing and government subsidized housing, check out Columbus Square.  It has a long history of being home to slums and crime; but, it’s a long way from a slum today.  Maybe Columbus Square will actually be a nice doorstep for north city and the site of more positivity and investment for the near north side in the coming years. (St. Louis City Talk)

Ouch, but I agree.

Looking north the Columbus Square neighborhood, view from parking garage located along Cole St @ 10th St. Twin towers of the historic Shrine of St. Joseph can be seen in the background.

Still, I love exploring new neighborhoods. It’s one thing to go down an unfamiliar street occasionally, but its another to get an opportunity to immerse oneself in a new experience.  In future posts I’ll talk about why we moved and why we selected the housing we did.

It feels very good to again be living North of Delmar.

— Steve Patterson

 

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