The pull of belonging is strong. The sense that your own people are more important than other people. Others vs. Ours. Especially in a time of fear.

BCG is a vaccine for TB, used worldwide historically, but since TB has been controlled in some countries, limited to a much smaller number of countries today. India is one where every baby is vaccinated with BCG.

Oddly, it is also the drug used to treat stage one bladder cancer. However, the drug is instilled intravesically, inside the bladder itself, instead of injected just under the skin. It is not a systemic treatment, so it tends to have fewer and less serious side effects than systemic treatments such as chemo.

The side effects of instravesical BCG can be tough nevertheless. It is a very toxic drug and is delivered from a vial that is 500 times the amount that is injected as a TB vaccine. When you urinate the drug out of your bladder, you must add bleach to the toilet bowl, let it sit for half an hour and then flush. You must be careful to not get any on your skin or to expose a partner via sex or close contact.

For me, the side effects included extreme cramping and burning, fatigue and malaise, so intense that my dose had to be reduced. Some folks suffer much more, and the more doses you have the worse it gets. The side effects are cumulative.

I had six infusions, but for folks with high grade cancer and recurrent cancer, doses can reach into triple digits over a lifetime of battling a cancer with the highest recurrence rate of any other.

The drug is made through a lengthy process. It must be grown in a lab. At one time in the United States two strains and two companies provided BCG, Sanofi and Merck. Because of an outbreak of mold at their labs, Sanofi ceased making it. Merck is the only company now that makes the drug used in the United States, and it is in short supply.

It seems that bladder cancer is not important enough, doesn’t kill enough of us, for Merck to ramp up their production or for other labs to initiate production. Bottom line: there’s not enough money to be made.

Consequently, a shortage exists and other drugs have to be used instead. As is common with any treatment, the large treatment centers in high population areas tend to have greater access to BCG. If you see a local urologist in a rural environment, it’s likely the shortage is more extreme.

Consequences of not having the access you need to BCG can be losing your bladder, the standard treatment for folks with more advanced stages of bladder cancer. The surgery for bladder removal is serious and the quality of life resulting from losing your bladder compromised.

Enter COVID-19. Epidemiologists noticed something interesting about localities that routinely give BCG as a TB vaccine—rates of getting COVID were much lower. That’s encouraging, of course. It may mean that a vaccine safe enough to give babies could prevent contracting the Corona virus.

Currently, a study is being organized to test the theory. High-risk health care workers will be recruited to a double blind study to see if BCG is a viable option for prevention of COVID. Researchers had to use a group of people who were naturally being exposed to the virus and, of course, those on the front lines make the most sense.

If it turns out that BCG can be used as a COVID vaccine, then there is lots of money to be made, and I suspect that many drug companies will begin to take an interest. It will be a slow build to provide enough of the drug, but it could be transformative. Ironically, urologists are on the front line of seeking a vaccine for this pandemic.

During a BCAN webinar today about these developments I found myself crying, and I’m ashamed to say, not with joy. Rather I felt great sadness for my community of folks with bladder cancer. A drug, already in short supply, is being tested for a non-bladder cancer related illness.

It’s important to note that one vial of BCG used for one intravesical therapy can be used for 500 doses of vaccine for testing. It likely won’t have a severe impact on treatments for bladder cancer. And, if it proves to be successful as a COVID vaccine, there is no doubt that it will be produced in vastly greater amounts.

But, my community’s need won’t have been the catalyst. Nor will the worldwide communities who still face TB infections. We are more disposable, less important, either because our numbers aren’t big enough or because folks live in countries that aren’t Western and predominately white.

Nevertheless, this is, of course, very promising news for the pandemic and, in the long run, for the bladder cancer community.

On an anecdotal basis, and not scientific in any sense, I have to say that I’m encouraged by my own experience. For about four years after being treated with BCG I had no colds or respiratory illnesses at all. None. When I’ve mentioned this to a few others who’ve been treated with BCG, they noticed the same thing.

Researchers don’t know if intravesical use of BCG has any impact on the immune system outside of the bladder. In fact, most have rejected the notion that it does. Still, no research confirms this conclusion.

I am reminding myself that my protective sense of belonging to the bladder cancer community that gives rise to feelings of sadness and, even, some anger, are just that. Feelings. And, they will pass.

It could be the drug that has successfully treated me could protect millions of people from a terrible illness.

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The above image has become a daily, familiar, and vexing sight to many including myself. Millions of eligible Americans have still seen no stimulus money even though the government began distributing the payments almost two weeks ago. When the mainstream news media covers this problem at all, it tends to cover only one small part of it and then regurgitates advice provided by the IRS which is inaccurate.

It seems that when there’s anything approaching comprehensive coverage of many people’s current reality as it relates to the stimulus debacle, it’s in some obscure special-interest publication like this Accounting Today article.

As far as I can tell, there was a massive caveat to receiving stimulus payments that the government failed to explain or even mention to the public and which the media never thought to clarify in the time leading up to the distribution: To receive a direct deposit to your banking account, it wasn’t enough to have filed a tax return for 2018 or 2019, you must have received a refund in one of those years. There seemed to be an automatic assumption that everyone receives a refund.

Millions of taxpayers like me, who paid taxes owed in 2018 or ’19, undoubtedly took the government’s line at face value: If you filed taxes in one of those years, and your income met the eligibility criteria, you “wouldn’t have to do anything” to receive an automatic deposit as long as the IRS had your banking information.

Wrong.

When several days in a row of checking my account and trying the useless “Get My Payment” tool yielded nothing, I learned the above fact from a Google search that turned up this post from an obscure Atlanta news site and the following email from my 2018 tax preparer, FreeTaxUSA:

Hello,

Thank you for contacting Customer Support. I sincerely apologize for the frustration you have experienced.

The IRS will not send Payments to accounts used to make a payment to the IRS. After you properly verify your identity, the Get My Payment tool will allow you to submit your bank account information if your Payment has not been processed.

In situations where payment status is not available, the app will respond with Status Not Available.

Which begs the question: Why did I have to find out this way? There is nothing, at least that I have been able to find, on the IRS website that explains this.

The media reports dealing with stimulus payment snafus have generally focused on people who used the tax filing services TurboTax or H&R Block to receive their refunds who aren’t getting their payments because of the way those refunds were handled. But that still doesn’t tell the whole story. If you did not receive a refund in either 2018 or 2019, then it doesn’t matter whether you did your own taxes or used a third-party service.  It also doesn’t matter that you used the same bank account to pay taxes that you would use to receive a refund.

There are millions of self-employed, fixed-income and other people in the United States who either owe tax to the IRS when they file their taxes, or neither owe nor are eligible to receive a refund. Most of them are likely unpaid as of this writing.

This situation has resulted in the absurd scenario where millions of Americans who have not suffered a loss or even any hit to their income during the pandemic lockdown, but who received tax refunds in the past two filing years, are $1,200 richer thanks to their coronavirus “bonus” check, while other folks who could desperately use the money to pay everyday bills are left out in the cold and wondering when, if ever, they will see these funds.

The ‘Get My Payment’ feature doesn’t work

If anyone has been able to successfully use the Get My Payment tool on the IRS website, I would dearly love to know. Without exception, every article I’ve read about stimulus payment issues tells the reader to go to this tool to put in their bank account information or their current address. That’s when you get this:

Then the articles will invariably tell you, regurgitating IRS content, that if you see this message it means that:

a) You aren’t eligible because you earned too much

b) You didn’t file a return in either 2018 or 2019

c) You received SSI, SSA or VA benefits

d) You are inputting your personal information incorrectly

a) Wrong

b) Wrong

c) Wrong

d) Wrong

This Time article that reported payment glitches included another IRS link entitled “Coronavirus Operations and Services,” which yielded this page.

This is surely Dante’s Seventh Circle of Hell.

At this point, I’m beginning to think the shutdown will be over or nearly over before many eligible Americans ever see their stimulus money. They’re saying paper checks could take several months to arrive, even if the IRS has your current address which isn’t the case for me and many others.

I’m one of the lucky ones. Many out-of-work people have also been unable to successfully file for unemployment benefits and small businesses have been shut out of bailout loans.

And now there’s reports about a second round of stimulus payments being debated – when they couldn’t get the first round right. Even more bonus checks for the still-employed.

With most sports around the world on pause, revisit iconic sports moments from the past to help fill that void.

Michael Jordan once scored 63 points in an NBA playoff game vs. the Celtics, but his highest-scoring game at UNC was in 1983 against Georgia Tech.

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I’ve had a good time running Despising Yourself, Positively (formerly The Magic of Writing, formerly formerly BastardsArentMassTurds on WordPress) with ChicagoNow. It’s been a while. I pitched my blog idea to CN back in 2013, wanting to gear it toward interviews with authors and artists while sharing some stuff hanging around my brain. I did that. I’m pretty happy with what my blog has turned into and I love that I’m able to see my own evolution as a writer and as a human through my posts. I’ve decided to switch on over to my own WordPress blog site to yes, have more artistic autonomy over the layout, but also because I’m not a fan of ads (who the heck is?) and the pop up video player drives me insane. I know CN likely exposes their bloggers to higher traffic, but I’m excited to detach and start elsewhere. Seems appropriate somehow.

In short, I hope you’ll join me there. The content will be the same, yours truly will remain the same, it’s just a new destination. Thank you, sincerely, for your readership and support over the years.

I can now be found at despisingyourselfpositivelyblog.wordpress.com. Please bear with me as I work through any kinks of the new site.

Hope to see you there!

Each person and family experiences this chaotic and uncertain time from their unique perspective, which may include medical professional and essential in-person workforce stress, physical illness, financial hardship, unemployment, anxiety, panic, grief, moments of joy and/or extra time.

Quarantine photo credit: my Dad

We do our best to accept the grief for this world change. Thanks to my husband, nine-year-old and seven-year-old boys, sis, parents, family and friends for cheering me up during this unexpected time. A few of simple work life joys include…

1. Regular routines that can now evade us rejuvenate us like coffee, water, shower, clean hair, moisturizer, brushed teeth, exercise and chores.
2. Although we miss in-person mass on Sunday and the recent Easter holiday, we still watch mass together on Sunday mornings as a family. Our oldest would now graduate from the junior choir to treble choir, but leads by example at home.
3. Our 3rd grade son’s teacher captures our family heart with the art of fairy tales, which our boys read and write.
4. We all read. Thanks to my sis who just gifted me, Writers & Lovers Novel by Lily King and Little Fires Everywhere by Celeste Ng.
5. Despite some Chicago winter flurries, the sound of birds, buds and bulbs that bloom remind us spring beckons.
6. Dance it out, yo! Our boys indulge me in these quarantine favorites, “Stuck in the Middle With You,” “I Will Survive,” “Miami” and more.
7. Social distance elation of stranger or neighbor greeting.
8. Introverts get a big pass on unnecessary small talk now.
9. We get ready for the privilege of virtual zoom chats, which vary starting with our first-grade youngest.
10. Our boys make extraordinary art with their Dad.
11. We walk our Chicago neighborhood, a lot!
12. My youngest taught me to spiral throw the football.
13. Virtual exercise, yo!
14. Friend and family texts and phone calls help.
15. My husband and I just binge watched Homeland, catch-up on The Six of Us and now watch Little Fires Everywhere.
16. We strive to do our best. Give others space and act with grace.

We acknowledge some moments are rough, but try to appreciate the joy and thank all our loved ones who empathize and share their best practices for e-learning and our new normal. We pray for all our people, we may find a vaccine and get access for wide-spread testing. We feel fortunate to support local businesses and quarantine from home. Best wishes we all emerge stronger together! XOXO

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