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 a Mess
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.
Delta Blues
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.
Number Eleven
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!
Final Thoughts
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.
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July 6, 2020 – I finished the last of my scheduled doctor’s appointment this afternoon – annual physical. Everything was fine according to my internist. I’ve been with this same doctor for perhaps 25 years. He knows as much about my health as I do. After last year’s physical he joked, “You’re the healthiest guy with cancer, who had a heart attack, I’ve ever seen.”
Based on the numbers from this year’s blood tests and urinalysis, I hope that comment remains true.
Appointments, Appointments, Appointments
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| At least it’s clean. |
Because of COVID-19, I waited until June to follow-up with most of my doctors. In the past thirty days, I saw just about everyone: cardiologist, urologist, orthopedist, dermatologist, oncologist (we’ll get to that in a moment), and even the dentist (no cavities!). All of these visits we’re either annual checkups, routine appointments, or quickly scheduled due to an issue that came up. I saw my orthopedist after I over did it with exercise, yard work, and pressure washing the back patio.
Note: The patio’s now clean, but I was in some serious back and muscle pain for about a week.
Metastatic Melanoma
In early June I had my scheduled CT scan and doctor’s appointment at the West Cancer Center. As I mentioned previously (see Status Quo and An Early Christmas Gift), I am now scanned about every six (6) months because my tumors remain stable and (for the most part) unchanged. June’s CT results were pretty much the same. Nothing – in my lungs – has changed.
Now For Something Completely Different
There was, however, something completely unexpected on the scan results. A fairly large mass – about 2 1/2 inches – on or around my right adrenal gland. The adrenal gland sits on top of each kidney. The radiology oncologist called it a heterogeneous mainly low density mass. Basically, it looks like I had some internal bleeding either in or around my adrenal gland.
Between chemotherapy meds, blood thinners (to help keep the stent in my heart working), and everything else I’ve been through, it’s hard to know what caused this mass.
Modern-day Torture Device
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You never know what’s
lurking inside. |
My oncologist scheduled an MRI to get a better look. If you’ve never had an MRI, it’s very strange and a bit nerve-racking. The MRI machine is claustrophobic and loud. And weird…I swear I could feel the magnetic force going through my midsection. Yuck!
Unfortunately, the MRI didn’t provide any new clues as to what’s going on inside me. The concern is that this blood mass may be hiding a cancerous tumor (or, the mass was caused by a cancerous tumor). The size has not changed, and I’m not in any pain.
At the end of July, I’ll have another CT scan to see if anything’s changed. Then, the doctors and I will figure out what the next steps will be.
Possibly another twist in my melanoma journey. More to come…
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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.
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December 31, 2019 – It’s been a year. Man, has it been a year! Like many folks, the end of the calendar year brings reflection and remembrance…and, perhaps, a little remorse. For me, even the month of December brought a flood of new experiences along with memories from the prior year.
I decided, in an indirect way, to have a heart-to-heart talk with myself. Maybe this time I’ll listen.
Writer’s Block
Two more feature articles (see screen shot below) were published online this month (December) at StoryBoard Memphis. While I’ve enjoyed writing these stories along with researching and learning about my subjects, feature writing has taken me away from my true writing love – fiction. So, at some point in 2020, I want to block out enough time to finish my novel.
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| Yes, Elvis is truly everywhere…even in Arizona’s Verde Valley. |
Heart-to-Heart
It’s been one year (December 21, 2018) since I had a heart attack. I wrote about my experience last year at this same time (see All I Want For Christmas…). Life has changed, life has stayed the same, and, as we all know, life moves on. My heart attack was essentially genetic, but I’ve got to continue to take care of myself – like all of us – in order to prevent any more issues.
In an ironic twist, on December 21st (2019), Skincancer.net re-shared one of my blog posts (A Walk in the Park) in their Facebook feed. It’s one of my favorite pieces from 2019 with a very simple message: nothing in life is a walk in the park.
Survivor’s Guilt
One definition of survivor’s guilt states that someone may feel guilty – as though he or she has done something wrong – because they have survived a traumatic or life-threatening event when others have not. Those of us who deal with cancer walk a tightrope of emotions, and survivor’s guilt can rear its ugly head at any moment – especially during the holiday season. I previously talked about my own guilty feelings in the post An Emotional Morning.
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| A great shot from Miles for Melanoma. Our Centrum Silver moment.
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That guilt and pain took center stage right after New Years when I found out that yet another friend had died from cancer. This friend and I shared the same birth date (May 20) and with his passing the close-knit blues music community (national and international) lost a great advocate.
Reflecting on Another Year
I’ve grown tremendously this past year – both as an advocate for skin cancer research and melanoma prevention and as a writer with several published stories to my credit. One of my big successes -under both advocacy and writing – was a piece published (online) nationally by Coolibar Sun Protective Clothing. As it turned out, the original story (from July 31, 2019) was re-shared by Coolibar on Facebook on December 30th.
December 31st
It’s been five (5) years since my mom died, so 2019 ended with an anniversary that no one wanted to celebrate. I’ve written two posts about her decline from dementia and her passing. My dad still misses her very much, of course, but it’s a sad way to ring in the new year…any new year.
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June 22, 2019 – Six months ago I was lying in a hospital bed wondering, “What the hell happened?”
Honestly, I knew what had happened – I had a heart attack! Actually, I had several heart attacks – myocardial infarctions – over a twenty-four hour period. It was surreal. I wasn’t supposed to have heart problems. I have plenty of issues with Stage IV cancer, so no one – myself included – was focused on my heart.
My doctors monitored my cholesterol numbers – good, but not great – and my liver values (also pretty good and stable). My heart? That was something obese people or older people worried about. Not me.
So my melanoma journey diverged to become a health journey. I not only had metastatic melanoma and any recurring skin cancers to worry about; now, I had heart problems to keep me up at night.
Once again, I was fortunate. There was no damage to my heart from the 100% blockage of my right coronary artery (RCA). My new cardiologist put a stent in my RCA and, less than 24 hours later, I went home. My release from the hospital gave new meaning to I’ll Be Home for Christmas.
Note – Here’s the link to the original post about my heart attack: All I Want for Christmas Is…
Christmas and New Years came and went. By mid-January, I was slowly adjusting to my new daily pill regimen. The meds did their job and my cholesterol significantly decreased.
At the end of January, a thirty-six session cardio rehab stint began (see Heart Update at the bottom of Status Quo). Three times a week I spent an hour riding exercise bikes, walking on treadmills, and getting my heart rhythms monitored. Rehab grudgingly became a good routine. After almost three solid months of consistent exercise, I was feeling pretty good and looking okay. (Still need to lose another 5 – 10 pounds.)
Rehab ended in early May and my heart grew lonely (hence the title of this post). Not really. But I did miss the routine and the normalcy of rehab. The steady exercise was good for my heart and, surprisingly, my soul. During that period, I realized that I still have it in me to change. That’s the key – to want it. I have to continue to motivate myself to stay healthy.
The rest of May was hectic for us. A couple of trips along with time at the beach. My cardio routine was broken and it’s taken awhile to get it back. Sometimes good beer and good food will do that.
So, I’m now the owner of a lonely heart. It’s mine and it’s up to me to keep it beating. Like the lyrics of the original Yes song: You’ve got to want to succeed.
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| Miss Susan grows some beautiful irises.
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Melanoma Update – In early June I had my six-month CT scan and blood work. Everything was virtually the same as last November. No new tumors and my existing tumors remain stable and unchanged. Great news! My dermatologist took an additional margin on my back (Ouch!) which turned out to be benign. Also, great news! (See Wake-Up Call for details.)
Heart Update – Nothing new to report (other than what you read above). I’ve been having some issues with excessive heat and humidity. Who doesn’t? I see my cardiologist at the end of July. Hope he has some answers.
Thanks for stopping by.
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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.
