We finally returned to Memphis later that day.  It was a Sunday and we had just returned from getting our son back to college in Atlanta.  I was thinking about everything that had to be taken care of at work for what promised to be a hectic Monday.  Likewise, I was taking care of things around the house – moving trash cans to the street for Monday morning pickup, watering my plants on the front porch and the back patio, retrieving our dog, Nixie, from the vet, and so on.

Finally, I had a chance to check email and Facebook.  There it was – T Jerry Ellis was dead at the age of 71!  Oh, boy…I wasn’t sure how to feel at that moment.  An online friend was dead from melanoma.  He had died that morning around 10:30 or so…right around the same time I had that strange feeling.  Eerie, very eerie.  To add to the irony, Jerry passed away at his daughter’s home in Heflin, Alabama.  Heflin is right off of Interstate 20 – the same interstate we were driving on that morning.  Eerie…

To this day – until I published this post – I have never told Vicki that T Jerry died.  Why?  Because T Jerry’s melanoma was almost the exact same genetic mutation as mine, and he was on the same treatment regimen (Imatinib) as me.  T Jerry – everyone called him that, and to this day I don’t know why – essentially had the same melanoma as I do, but it metastasized in other areas of his body.  He took Gleevec for over 8 years, before the cancer overwhelmed his body.  That’s one of the key reasons I did not want Vicki to know about T Jerry’s death.  I just don’t want to think about what will likely happen to me.

T Jerry and I “met” online about five or so years ago.  I had started to look online for answers and support groups after my bout with melanoma in 2009 (I had two melanomas removed via surgery).  Back then, there was not a lot of Facebook traffic and online support groups – chat rooms, boards, etc. – were still rare.  I “found” Jerry, if you will, on a message board sponsored by the Melanoma Research Foundation (MRF).  I was new to this whole “sharing” and asking questions to complete strangers, but T Jerry was one of those stalwarts who always had an answer or suggestion, or simple words of encouragement.  As my melanoma unfortunately advanced, I would “run into” T Jerry on the Internet from time-to-time.  He was still giving advice, researching new treatments for metastatic melanoma. I never really kept in-touch with T Jerry until that July day in 2013 when my world changed forever. 

I immediately started to reach out through message boards and Facebook, which was quickly becoming the place for online communities.  T Jerry was right there on the Internet where I had last “seen” him.  Now, we had something else in common: our genetic markers for metastatic melanoma were virtually the same.  I was scared, somewhat confused, and just looking for someone to “talk” to.  T Jerry was there for me.  I even remember talking with him about the pros and cons of clinical trials at MD Anderson Cancer Center (in Houston) versus Vanderbilt’s Ingram Cancer Center (VICC).  Fortunately for me, I didn’t have to go anywhere for my treatment.

We also found out we had other things in common.  We were both from Florida and we both had a connection to Memphis.  T Jerry was stationed in Millington, which is just north of Memphis, for several years.  I still remember his FB private message to me: “What’s a Florida boy doing in Memphis, TN?”  It still makes me smile.

A good friend.

Rest in Peace, Thomas Jerry Ellis…you are truly missed.      

Green, green, green…

Why do I care about the rain? Or the heat and humidity?  It has more to do with the side effects of my medicine (Gleevec) and the necessity to stay out of the heat – and the sun! – as much as possible.  Since I love being outside – even in the heat of summer – that becomes a huge challenge.  In addition, my current job requires me to venture out into the plant, which gets extremely hot during a typical Memphis summer. Some of the production rooms can get to 110 degrees by mid-day! I feel for the folks who work in those conditions and thank my lucky stars that I don’t have to be in the plant all day long.

I’m not even sure if I can describe how tired and rundown I get after a day of dealing with the heat.  Just think of being so tired that you fall asleep by 7 or 7:30 at night – every night of the workweek.  By the time Friday rolls around, I’m plain old worn out!  It’s made me start to wonder if I should begin to “take it easy” and not work as much, if at all.

Oh well, I should be grateful that I have lived another summer to sweat and swear in this heat (and rain!).

Thanks for listening…..

My red Epiphone Special.

Late Spring 2015 – One of the more severe side effects of my chemo medicine (Imatinib) are muscle cramps and muscle aches.  While I’m now tolerating the cramping and pain much better than a year ago, I still don’t have complete strength or stamina in my muscles, joints, or tendons.  In particular, my hands have become very sensitive to over-use – especially in the winter time – and there are times that I have to get someone else to help me with simple tasks (for example, unscrewing the top to a soda bottle).  The aches and pains come and go, but, nonetheless, frustrate me.

A little scratched up.

I’m a especially frustrated that I can no longer practice and play on my electric guitar.  (I don’t even try to play my old Fender acoustic. As you musical types know, an electric guitar has a much easier neck to finger.)  I gave up trying more than a year ago, and the few times I’ve given it a shot since then, my fingers just don’t have the strength they used to have.

It’s not that I was ever much of a musician…and I’m still not.  But I have always enjoyed music and how musicians “make” music.  I was, however, never one to sustain my musicianship.  I never had the self-discipline or the drive to actually become a “true” musician.  Nor was I ever talented enough, artistically, to create my own music.  But I found some comfort in the last several years in trying to relive whatever glory days I used to have as a pseudo-musician.  Even though the best years of learning the guitar – or any instrument – have long passed me by.

So, ever few years I would mess around with the few chords and notes that I know (or remembered from way back when).  I even took guitar lessons for a couple of years.  My teacher was not only an excellent musician – and instructor – but he was a wealth of knowledge about musical genres and rock history.

My hope is that someday soon I can make the effort to re-learn all those “guitar things” I used to know and, truly, find the strength to play my little red “Abbey.”  Not sure if I’m supposed to have a nickname for my guitar, but “Abbey” sounds good.

Thanks, as always, for listening…..   

I just want to be “Liked.”

Oh well, at this point I’m just ranting, but it really does piss me off that people will “friend” you on Facebook, but after that, they have no further interaction with you.  I understand that I can’t check-in with all of my FB friends every day, or even every week, but I would think that if someone who is acutely aware of my situation would make even a half-hearted effort to be engaged – there’s that word, again – even through a somewhat impersonal medium like Facebook.

I’m not asking for much, just for people who claim to “care” about my journey to actually invest some time in finding out what’s going on…to make a small effort to ask, “How are you doing?”  If you can go to the effort of posting cat pictures and “sharing” prayer appeals, you can certainly send a quick personal message (PM) or post on my timeline.  You’d be amazed at how it will brighten my day.

As always, thanks for listening.

No doubts about what’s inside.

Later in March we followed-up with the oncologist, who told us that the board and the melanoma “expert” (a researcher at the University of Pittsburgh cancer center) both agreed that we should “stay the course” with my treatment.  I have another CT scan scheduled for May and my annual PET scan is due in July.  It was both a relief – I don’t want to be “burned” – and a victory in terms of feeling control over my situation.  Just knowing that other doctors and experts are being consulted made me feel less isolated.  Eventually, we’ll have to make some major decisions about my treatment, but I want to make certain all “easy” options are exhausted before we move to next level.

As always, thanks for listening.

Not that I needed to be reminded that my situation is a serious one, but the company that makes and sells my cancer drug, Gleevec, (aka Imatinib) has begun to package my meds in a yellow “transport bag” that leaves no doubt that I’m dealing with some serious stuff.  Just another not-so-subtle reminder that I’m dealing with some serious stuff.  It is sometimes hard to remember that when I’m living a somewhat “normal” life (whatever that is).

The drug company also started us on a discount program in which we receive my meds at almost no cost – about $30 for a 90-day supply.  The drug company calls it a financial assistance program and part of their “patient advocacy” initiative.  I think it’s because I’m a human “lab rat” and as I continue to live by utilizing an experimental treatment, the company will be able to sell more of its product to other cancer patients.  I guess I’m being cynical…whatever the reason, I’m glad for genetic testing.  That’s what it truly keeping me alive.