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.