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April 28, 2021—The phlebotomy tech begins to poke an IV needle into a vein in my right hand. As part of the little stick portion of the process, he tries to distract me with small talk—a question about why I’m having an echo, questions about my overall health—and I give him a complete rundown of my present and past health woes. He looks at the plastic id cuff on my wrist and says, “You’re only 58.”
I laugh and tell him, yeah, I’m a mess, and my wife tells me I’m a mess, too.
I’m at Sutherland Cardiology today for an echocardiogram—there’s a minor concern about my heart function given that I’ve been on a new cancer treatment regimen (immunotherapy) for a while and that my blood pressure is higher than normal (for me). You may recall that I had a heart attack at the end of 2018 (see All I want for Christmas…).
As part of my rundown, I tell the tech that just this week I’ve been to Campbell Clinic for physical therapy, I’m here at Sutherland for my echo, and, tomorrow (Thursday), I’ll be at the West Cancer Center for my 11th infusion. I go on to explain about the last six weeks of PT for a torn rotator cuff and frozen shoulder, and my stage IV cancer diagnosis and treatment.
It’s enough to make your head spin…yeah, I’m a mess.
Vicki and I took a four-day road trip into the heart of the Mississippi Delta. A great trip that I documented in two parts for StoryBoard Memphis, an online publication about arts, community, and cultural of Memphis and the MidSouth. I’m proud of these pieces (Delta Diaries) along with other articles I’ve written for StoryBoard.
I’m excited that my writing has improved and is being recognized by others. I also have a short story that will appear in an upcoming local mystery anthology. (A second story is in the works for another anthology.) My long-term goal is to get a book published, and I feel closer to achieving that goal every day.
Infusion number eleven (11) was the next day (April 29th) at the West Center. While there’s nothing new to report regarding my prognosis, we were excited when the nurse practitioner told us that my lab (blood) work looked great. Liver, kidney, and other internal functions all looked really good. Couple that with how I currently feel—which is also really good—and we’re very happy.
Now, let’s hope the adrenal gland tumor shrinks. We’ll know more on June 10th.
Melanoma Awareness Month
May is Skin Cancer and Melanoma Awareness Month. As an active advocate for prevention, treatment, and, eventually, a cure, I’m involved in a number of activities, initiatives, and fund-raisers—both locally and nationally.
You’ll see a lot of Facebook posts from me about donations, support, and, of course, taking care of your skin. For obvious reasons, this issue is important to me and my family.
While donations and support are special and mean a lot to me, it’s much more important that all of you make the effort to take care of yourselves and your loved ones—especially younger ones. Excessive sun exposure and sun damage when you’re young—even one sunburn—can impact your health years down the road.
Protect your skin!
The screen shot below is from the website of Aim at Melanoma, one of the national non profit groups that I work with. You’ll see a dark blue box on the top row (almost in the middle). That’s me and that’s my sincere sentiment. I could not survive or continue on my journey without all of you!
Thanks for everything…and thanks for listening.
March 13, 2021— It’s been a week…man, it’s been a week. As many of you know, I love blues music, and this week has been one continuous blues song—full of highs and lows, and just about everything in-between. The theme of this post is dedicated to that legendary Mississippi Delta bluesman who made Chicago blues an international sensation: Muddy Waters.
Like Muddy’s iconic song, Rollin’ Stone, this week had me back, back down the road I’m goin’. In other words, every time I moved forward, I seemed to move even farther back.
Monday I received my first Pfizer vaccine dose. I posted on Facebook that the process was fairly quick and well-organized. In fact, Muddy was there to accompany me (see bottom photo). I’m glad to be closer to being fully-vaccinated and, hopefully, safer from the coronavirus.
This week I started a new writing gig for StoryBoard Memphis. I now have a recurring column, currently titled Time Capsules. I’ll focus on personal essays, stories, and observations/commentary. My first column (Time Capsule) was published on Thursday, March 11th.
I’ve written several pieces for StoryBoard, and I’m excited about the opportunity to continue developing and improving my craft. In addition to the new column, I have two short stories that will be published (hopefully sooner than later) in a local mystery writers anthology.
Deja vu all over again—Warning: Yucky picture!
It’s not only been a heck of week, it’s been a hell of a year!
Thanks, as always, for listening.
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.
|Up the steps to the
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.
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.
|A long day.|
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.
Thanks, as always, for listening.
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.
|Aero Garden in the kitchen. We
should have grown veggies
instead of petunias.
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.
|Really? Sleep in here?|
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
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.
|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!
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)
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.
|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.