So, it really ticked me off today when I see that someone who is – or, at least I thought was – a friend of mine sending birthday greetings to a mutual acquaintance who she hardly knows.  Why does this bother me so much?  Probably because she rarely, if ever, “Likes” or comments about any of my Facebook posts, or my health updates (whether on Facebook or through email), AND this mutual acquaintance doesn’t even update his Facebook page on a regular basis.  We’re talking once a year, maybe.  In fact, he won’t even acknowledge – like so many of us do – that people sent him FB birthday wishes.  As a matter of fact, I’m not sure he does anything proactive on Facebook.

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.

March 2015 – The latest word from my oncologist is that the largest tumor – in the very upper right section of my right lung continues to grow, albeit very slowly, and the tumors in my left lung have stayed relatively the same size (he thinks), but there is one – in the lower left lobe – that has “changed” from the last set of scans.  Needless to say, we’re at a crossroads in terms of my treatment regimen.  There are several options to choose from, and none of them may make a significant impact on my present condition.

Option 1 – We do nothing and continue with the Imatinib.  My oncologist is not keen on this option because he thinks the medicine has done all it can do (which is good), but my melanoma may be fighting back and, possibly, starting to win.

Option 2 – We try a new drug regimen either with or without the Imatinib.  The new drug, Dasatinib, is primarily used to treat certain forms of leukemia.  It is a “kinase inhibitor” (whatever the hell that means), which puts it in the same category of drugs as Imatinib.  The idea, according to my doctor, is to supplement my current drug with a newer “version” that may help stem the growth of my current tumors.  Unfortunately, the insurance company did not think adding another costly cancer drug was something that they want to pay for, so the idea was nixed.  (My oncologist said he could write a letter to the insurance carrier to appeal their decision, but we decided to look at the other options, first).

Option 3 – The final option was to ablate the larger tumor in my right lung.  Ablation essentially means to vaporize or burn something.  In my case, a cancerous tumor.  There are three key types of ablation treatments: radiofrequency, microwave, and laser.  According to the Mayo Clinic’s website, radiofrequency ablation for cancer is a minimally invasive procedure that uses electrical energy and heat to destroy cancer cells.  Basically, they would stick a needle in my lung and “zap” the tumor with heat.  Ugh!  I was not too thrilled to hear about that option.

So, after meeting with the oncologist on March 19th, we decided to “punt.”  We asked him to get us a second opinion.  His initial response was sort of defensive, but, then, he bought into it.  Our biggest concern was for me to undergo a possibly difficult procedure, which may prove unnecessary and, worst of all, not make any difference.  The doctor agreed to consult with some melanoma experts and put my case in front of their “tumor board,” which meets periodically to make decisions about patient treatments.

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.

January 9, 2015 – Mom’s service was today.  A day that cannot be characterized as “bittersweet,” but as painful as the death of a loved one can be, tragically, my mom has been “gone” for a very long time. So, in a sense, her passing brought some relief that her suffering – along with my father’s – was over.  Seeing those pictures and accolades brought back a host of memories – some good and some bad – of our family’s life.  As much as I tried to console my father, I knew – as callous as it sounds – that his world would eventually be better.  Today’s visitation was both solemn and low-key.  It was nice to meet some of her old  teaching colleagues and several of her former students.  That was a nice testament to her legacy as a teacher.  No grandiose statements were made or eulogies given.  It seemed odd at first, but I think it fit with the mood.  Glenda has been “gone” for several years now…there really isn’t anything else to say.

November 15, 2014 – It was a “reunion” almost a year in the making.  The idea took hold after I reconnected with several fraternity brothers after announcing that I had cancer.  We thought of it as a reunion because several of us had not been to a home football game in Gainesville, Florida since 2004.  And a few of us were “out of staters,” who had not been to Gainesville in years.  One of my brothers, Greg, took command and organized the entire weekend from A to Z.  All I had to do was show up.

As ideas tend to do, the “seed” grows and flourishes. Sometimes, however, that growth can begin to spiral into something much larger than intended.  In the case of our weekend reunion, the simple idea of a “reunion” started to get out-of-control. Fraternity brothers – and their wives (and children) – were signing on by the dozens, or so it seemed.  Guys who I had not thought of – or thought much of – for years were RSVPing for a weekend that was originally intended to be somewhat low-key.  The seed, it seemed, had become an overgrown weed.

As the November weekend grew closer, anticipation, excitement, and trepidation also grew.  You have to remember that although I keep up with many of these guys via email, texting, and Facebook, I have not seen – face-to-face -many of them in a dozen years, or more.  And I was not the only one feeling anxious about returning to the scene of many a college hijinks. Most of us are in our 50s now, so the thought of getting blasted, smoking a stogie or two, or staying up all night reliving old, old memories was not what several of my closer friends signed on for.

I even got a little concerned when Greg sent out an updated listing of attendees.  “Oh, Lord!” I thought.  I really don’t want to see that asshole, again.  There wasn’t much I could do at that point.  I had to tell myself that I was not that same person, almost 30 years ago…a very young and immature guy trying to figure out who I was, playing a part, wanting to fit in, but still be true to myself.  I put a lot of those thoughts out of my head as the reunion weekend approached.  Still, old habit die hard, and old habits of the mind tend to live on in those creases of your brain that have remained closed for years.

Two generations of “brothers” reliving the past.

Yet, at the same time, I was excited to rekindle some of those old friendships, to be part of that tribe once again, and to thank all those guys who had sent me well wishes and encouragement after my diagnosis in 2013.  It meant a heck of a lot to me that those guys – now, men – who haven’t seen me in years wanted to reach out and support me during this new journey in my life.

As the saying goes, “The best laid plans…often go awry.”  In my case, it was a set of circumstances that seem almost comical now, but were not at the time.  Two days before Vicki and I are to board a plane for Tampa, I get a call from my sister.  My dad is in the hospital and is about to get fitted for a pacemaker.  He passed out in the Publix check-out line and, after having several tests run in the emergency room, the doctors determined that he needed a pacemaker.  Incredible…I had to let everyone know that I may, or may not, be in Gainesville for the weekend.  At the same time, it was a blessing that we were already scheduled to come to Tampa.

My dad ended up being okay…Installing a pacemaker is almost an out-patient procedure nowadays, but we remained in Tampa an extra day to make sure he was okay.  While I missed out on some of the Friday-night festivities, we did finally make it to Hogtown the following morning to tailgate before the game and catch-up during the game with the guys I truly wanted to see.

After the game – another loss during a miserable season – we made our way to my old fraternity house.  That anxiousness, which had been replaced by adrenaline over the past several days, began to creep back into my psyche.  Some it was warranted – those guys who were assholes in college were still assholes in adulthood – but I also met up with guys who I wanted to see, and we were genuinely glad to see one another.  That made all the turmoil of the past several days worth it.  My biggest disappointment was that I did not get to hangout with them longer.

So, can you really go home again?  It’s hard to say for sure…I don’t think I had enough time to feel like I was “home” in the true sense of that word.  At the same time, however, I have moved on with my life and I don’t have regrets with any place that I called “home” (even for a short period).  While it felt good to reconnect with my college friends, I was definitely not home.  I felt like a visitor the entire time I was there – and that includes hanging at my parents’ house.  My home is here with my family and my dog. This is where my heart belongs.

October 20, 2014 – Another 3 – 4 months and another CT scan.  These have become so routine that I have started to almost forget why have to be scanned every three to four months.  At first I thought there was nothing new to report.  In fact, my oncologist looked over the results and said everything was pretty much the same.  So, we’ll just “stay the course.”

Unfortunately, not everything was the same.  I had checked in with my internist on an unrelated medical matter and he had copies of some of the latest write-ups.  What I found out was that there was another tiny tumor in my left lung.  My LEFT lung!  Not my right, which still has a couple of small tumors, but my left.  What is going on?!  I was not happy, to say the least, and my internist explained that both reports sound positive: very small, slow-growing tumors.

Here’s what the report said – There is also a stable 3 mm nodule in the left upper lobe. However, when compared to December 2013, the right lower lobe nodule is much smaller in (and?) the bilateral upper lobe nodules have both minimally increased.  No new consolidation or effusion is seen.  There is no adenopathy or suspicious osseous lesion.

My oncologist didn’t really have an explanation for why he failed to tell us about my left lung, or why he was not clearer in his discussions with us about what was going on in my lungs.  I think one of the things I’ve noticed about my doctor and, perhaps, other cancer doctors is that they have to give so much bad news, or they have to deal with “here’s our last treatment option” that a situation like mine is almost too pedestrian for them, so they forget to bring some of the same intensity and focus as though this is “my last shot.”

While I can’t really blame him for seemingly “glossing over” what I consider a major change in my condition, I am still really pissed about it.  It makes me, once again, think that I need to spend every waking moment that I’m not at work or doing chores around the house studying my disease and all the potential options that are our there.  In other words, I need to “own” my cancer and its treatment.  Then, again, all that energy focused on my condition depresses me.

So, that’s my conundrum….and, unfortunately, it’s not an easy puzzle to solve.

Happy Anniversary to my one and only!

Vicki and I celebrated our 25th wedding anniversary, ironically, the day after my most recent scan.  I wish we could have done more to celebrate this milestone, but it was not to be.  For that, I feel truly sad inside.  She has sacrificed so much for me that I cannot begin to express in words how much I love her.  I know she would agree that the best anniversary gift I could give her is another 25 years.