October 23, 2020 – This afternoon, I completed my second round (infusion) of Keytruda (pembrolizumab) at West Cancer Center’s main campus. Keytruda, as I’ve explained previously, is an immunotherapy medicine – meaning it boosts the body’s natural immune defenses in order to fight cancer.
My new treatment regimen is based on science, real science. Not conspiracy theories, not voodoo doctors who believe in alien DNA, not off-the-cuff comments about drinking bleach to kill a virus. Real science.
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Up the steps to the
unknown.
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Immunotherapy treatments are relatively new. Keytruda was FDA-approved in 2014 and by 2017 was in use for solid metastatic tumors, like melanoma. The U.S. approval and testing process is long and somewhat complex. Clinical trials can take years to complete.
Giving Back
I volunteer my time by working on scientific review panels that evaluate research proposals for possible funding grants. I’ve been a part of this process for a couple of years now, and it is a tremendous honor to be a “consumer advocate” and share my impressions (and concerns) with cancer doctors and researchers. This is one of the many ways I give back to the melanoma (skin cancer) community.
I want to ensure that melanoma prevention and treatment moves forward towards a potential cure and the funding of this research remains apolitical. Scientists need to be able to do their work – without threats and without undue influence.
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| A long day.
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Infusion Blues
Although the Keytruda infusion typically lasts only thirty minutes, my October 23rd visit was over three hours. Blood work, IV insertion, oncologist visit, scheduling (and re-scheduling), waiting on lab results, pharmacy prep work, a flu shot – all took place before my infusion.
Sitting in the third-floor infusion area was both odd and sad. Memories of waiting in this area while Emily received her chemotherapy treatments brought a flood of emotions. I’ve been a stage IV cancer patient for a long time, but I’ve never had intravenous treatment. The infusion area is a dull, sterile environment. It’s sad watching folks from all walks of life undergoing treatment. We have one thing in common–however–we all have cancer.
At the same time, watching other patients hooked up to IV machines and monitors reminded me that we’re fortunate to have researchers, scientists, technicians, nurses and doctors working hard to find new and better treatment options and, maybe one day, a cure.
Real research. Real progress. Not just talking points during a political campaign.
Real science.
Thanks, as always, for listening.
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March 24, 2020 – Here’s the second in my pictorial journey through self-imposed home quarantine. As I stated the last time (see Part One), I’ll try to keep it light and try my best – no guarantees – to keep out the politics and frustration (a hard one at this point). We all need to smile a little more, right now.
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Aero Garden in the kitchen. We
should have grown veggies
instead of petunias.
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Pandemic Hits Home
Thursday, March 19th, Vicki comes in the back door and puts her things down in the dining room. She has an odd look on her face. It’s lunch time, so both Emily and I are sitting at the table in our breakfast nook. I ask her if everything’s okay…she proceeds to tell us that a coworker – who is new to her department – just got a call that her adult son was sent home from work because he has a cough and was running a fever. Suddenly, coronavirus gets even more real for our family.
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| Really? Sleep in here?
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Upstairs/Downstairs
We disinfect everything – and I mean everything. Vicki moves all of her day-to-day things into the dining room. We use clean dish towels to touch door handles and sink faucets. Emily and I continue to eat in the kitchen area while Vicki stays mostly in the dining room and the (rarely used) living room. Emily and I commandeer the den.
I sleep in the mother-in-law’s quarters downstairs. Zoe, of course, sleeps downstairs with me, but she doesn’t like it. Life is now very surreal. We have a much better appreciation of how people on the front lines of the pandemic deal with everyday life.
Weather, Weather, Weather
As I said in Part One, the weather in Memphis has been crappy – and that’s putting it nicely. Warm and rainy one day, cold and rainy the next. It makes a weird, depressing situation even more miserable. You can’t go outside, and it’s so dreary that every day looks like nightfall. Ugh.
God Paid the Utility Bill
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| Finally…sunshine!
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Finally…sunshine! Saturday (March 21st) was a glorious day. The sun was out almost the entire day. The neighbors were out, too, which was a mixed blessing. I’m not sure everyone is on board with social distancing. In particular, one set of neighbors are all crammed together in the front yard yucking it up and playing a form of tennis on the driveway. I watch from my front porch as one player hands a racquet to another neighbor (not a family member, by the way), who proceeds to get in the game. Yeah, I’m really not sure that everyone – even when one of those neighbors has cancer – understands how serious this situation has become.
One other note – We were invited (via text) to come over and hang out with these same neighbors. Vicki replied – also via text – that we may been exposed and needed to self-isolate. Did she get a response? Has she gotten any kind of response to this day? Nah. Piece of advice – If someone who’s married to a Stage IV cancer patient says that she may have been exposed to a deadly virus, and, therefore, we need to stay away from each other and everyone else, shouldn’t you do the courteous, caring thing and – at the very least – respond? People. I’ll address this, especially “religious” folk, in my next installment.
Zombie Apocalypse
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Apple Store in Germantown. Four
o’clock on a Sunday afternoon. |
After about two weeks of being at home, I decided that Sunday to get cleaned up, put on some real clothes, and drive around Germantown. Vicki and Emily had told me about the store closures and empty grocery shelves, but I wanted to see – from the safety of my car – what this pandemic looks like. It was – as I told Vicki when I got home – like a zombie apocalypse. No one’s out. Very few people driving around. Shopping center parking lots empty – on a Sunday afternoon! Wow.
Thanks, as always, for listening…and be safe and, if you can, stay home!
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Also, please make sure you leave your name or sign-in somewhere in your comment. Thanks.
Writer’s Note – I’ll continue to update my blog on a periodic basis. No set schedule. So, I want to thank everyone who continues to stop by and check out my blog. Please leave a comment or message; I’d love to hear from you.
Late January 2020 – We’re standing in one of the museum’s backrooms, the drone of the HVAC system along with the faint backbeat of blues emanating from the interior speakers can muddle your senses…especially when you’re having a conversation.
How Are You Doing?
Joe, being Joe, asks a straight-up question: “How’re you doing’?”
I’m asked this question all the time. All of us are asked this same question every day. The question is typically asked out of politeness, not really out of concern or as a genuine inquiry. The questioner doesn’t want to know how you really are. The questioner simply wants to be polite or appear friendly.
It’s like asking, “How’s it going?” You truly don’t want the respondent to go into a thirty-minute soliloquy about what’s really going on in that person’s world. Again, you’re simply being polite. It’s almost like a greeting.
In my case, however, How are you doing? takes on a whole different dynamic. Folks in my life know that I have cancer – Stage IV to be exact – and they also know that, at present, I’m beating the odds. Most of them also know that in December 2018 I had a heart attack.
So, How are you doing? almost becomes a Yeah, I want to know how you’re really doing cancer-wise, but I don’t know if I really want to hear the truth. I’ve actually noticed some people start to cringe or slightly wince – like they’re in pain – as I begin to respond. It’s a subtle thing, but it’s there in their facial expressions. Along with a more noticeable sense of relief when I tell them I’m doing fine.
Which is exactly what I tell Joe. I ramble a little, but there’s a lot to my condition that’s not so easy to explain. I’ve written before about how people look at me in disbelief when I tell them I have cancer – Stage IV cancer as a matter of fact.
Joe looks at me pretty much like he looks at everyone else – like he’s sizing you up. He tells me that he’s glad everything is going well. We banter a little more about living with cancer. Finally, Joe responds, “I know exactly how you feel.”
No Joe, I say to myself, you really don’t.
Say It Ain’t So
Say it ain’t so, Joe is an idiom used to express disbelief, disappointment, or even grief upon learning some unfortunate truth about someone or something. (The Free Dictionary Idioms)
The saying comes from the infamous Chicago “Black Sox” scandal when baseball hero Shoeless Joe Jackson admitted, under oath, that he and other team members cheated during the 1919 World Series.
My disbelief and disappointment stem not from learning some unfortunate truth about someone, but more from an unfortunate truth about something: People truly don’t get it.
They simply don’t get what I’m going through.
A Journey and A Nightmare
Having Stage IV cancer is both a journey and a nightmare.
I don’t expect people to pity me – in fact, I don’t want anyone’s pity or sadness. There are so many more people with cancer who are in dire situations. I also don’t want your prayers or your “qualifiers:” God’s blessed you or You’re so fortunate.
I already know I’m lucky to be alive. I don’t need to be reminded of it.
In early November (2019), I met up in Jacksonville, Florida with some college buddies and their spouses. While it was a great weekend, I still felt isolated and a bit frustrated that no one asked me how things were going. Sure, a few of them asked How’re you doing? Or, even, You look great! But no one really asked the question that is easy to avoid: How is your cancer?
There’s never a good time to discuss cancer. There’s never a good time to sit down and have a long discussion about a cancer patient’s prognosis. People are never sure what to ask or how to respond. What they don’t understand is that most cancer patients want to be asked How’s your cancer? They want to be able to give an honest assessment – the good along with the bad. We’ve already had to come to terms with our situation. As I like to tell people when they do ask – It is what it is.
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| Little Milton gets it. Just say nothin’ and enjoy the music. |
I’m not being cavalier…as I just said, I’m lucky to be here. But it still frustrates me how so many people in my world just don’t get it. For the most part I look fine, but I AM sick, unfortunately very sick. I think people don’t see me as someone who is dying, or at least they don’t want to think about death and disease. It’s difficult. In fact, it’s a nightmare – if you let it become a nightmare.
Be Careful What You Say
On the other hand, many people don’t know what to say or ask, or simply don’t want to say something stupid or insensitive.
I understand that, and I also understand that it seems everyone has been impacted by cancer. But you don’t know how I feel and you don’t know what I go through every day. Just like I don’t know what others with cancer go through. It’s my disease…it’s my cancer.
Say it ain’t so…but I have cancer, and I’d be happy to tell you about sometime.
Thanks, as always, for listening.
Note: If you want to leave a comment, just choose “Anonymous” from the Profile Selection drop down bar right below the Comment box. (It’s the very last choice.) Sorry for any confusion.
Also, please make sure you leave your name or sign-in somewhere in your comment. Thanks.
Writer’s Note – I’ll continue to update my blog on a periodic basis. No set schedule. So, I want to thank everyone who continues to stop by and check out my blog. Please leave a comment or message; I’d love to hear from you.
