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Sunday, January 31, 2016

Homing signal

One of the most predominate feelings I had after the dust had settled was the desire to be home. I don't mean at my home in North Carolina, I mean the home of my birthplace and rearing: Northwestern PA. I lived in PA from birth, in Franklin, PA since 3 or 4 years old, from elementary and high school, until I graduated with undergraduate degrees from Slippery Rock University (math and computer science), at age 22. Then I headed South, to attend more school at NC State University (computer science).

I'd had enough of rural Western PA by then, and it had probably had enough of me. I was young and wanted to go elsewhere, to find my own path. I wanted to pursue a graduate degree. My two choices graduate-school-wise were NC State and UC Irvine (as in California). California is certainly "elsewhere" from PA, but too far even for me at the time.

After that stint of graduate school, I stayed in Raleigh, NC. At that time, 1991, the software industry, which I was prepared for, was growing like crazy here. There was a lot of opportunity for a career. Not so much back home, for me; and I didn't have a desire to be there, anyway. Plus, my future wife was here, and she also had career opportunity as a medical technologist at UNC Hospital. We looked at moving back to the Pittsburgh area in 1995, but it didn't work out.

Once you get settled, married, get friends, kids, a church, before you know it you've become part of a community, and up and leaving isn't so easy. Twenty-six years in NC has flown by, I've now lived here longer than in PA.

Once the shit hit the fan back in May 2014, I wanted to be back home in PA. I wanted it a lot.

If I were smart, I'd find and read a book on this subject, it's probably understood. However, as usual, this isn't as important to me as simply understanding how I feel about it myself.

Usually we spend Christmas with my family in Franklin, PA. Of course in 2014 that was impossible: I was in the hospital until early December, and once discharged, had strict orders to avoid people. And winter / holidays are prime time for passing around colds and worse, and I couldn't take it. My dad visited us in NC over the holiday, and it was welcome.

So I hadn't been home in quite a while, two years. By Fall of 2015 I was anxious, like some hibernating animal, to get back there. I wanted to see my family, but also be in that place. Maybe it's a safe place for the scared little kid inside me, to be back in the fold of home. It's not just some place on the map; it's home. And I don't care how tough you think you are, when things go sideways this badly, you want your mommy to comfort you and daddy to protect you.

Under the Family Wing

We went to Franklin this year (2015) for Christmas, and pretty much all of my extended family was there. We stayed with my mom, as usual, in the house I grew up in. Being there brought a long-awaited relief, with much stress and fear falling away. I was on the leeward side of the mountain, finally, away from the shit-storm I associated with my other home.

My family simply treats me like myself, and that is a relief.

Plus, they're not inhibited to just ask what's what, and listen to the answer, even if it takes two hours to give it. With them, it's all good, there's none of the awkwardness I sometimes get with others, no effort (or need) to ignore it.

I hold my family close to my heart, and this includes my extended family. We all grew up together, spent the holidays together, hung out together, hunted together, worked together. There is no question someone has your back, and vice versa.

But there's a lot more to it than that. While visiting I spent some time tooling around with my dad, through the countryside. My grandparents (his parents) used to live pretty far out in the country near rural Cooperstown, PA. We drove all though the (once familiar) back (dirt) roads. We went up past the property that my uncle (his brother) bought not too long ago. I see why he bought it; it's a wonderful place.

Just being in that place was natural and comforting. It looked right to me; felt right. I love the mountains and the woods and the look of cut corn fields tucked away on hillsides and hollows. I wanted to be in that; like when I was a kid, we tromped around endlessly in the woods. We hunted that area. Deer hunting was a great event in my family. I have the fondest memories of a lot of us convening at my grandparents place the night before opening day. We had scouted the woods in the prior weeks, sighted in rifles. On the big day we got up early, cooked our breakfast, and set out into the woods, usually in the snow and cold, in the dark.

These and other fond memories came rushing back. Of course I carry them with me always, but somehow being in the place is better.

Back to Life

It was sad leaving PA for NC again. But, NC is our home now. Our kids were born here, and it matters to them, like PA does to me. It's important for them to be here. I know it's important to them, more important than my being home in PA, for example. One day they will look back as fondly on this place as I do my old home, and I want them to have that.

My job, which I wouldn't trade for anything, is here. The standard of health care is high here, and it's readily available. We live near two major medical research universities. Our friends are here, our church is here. NC State baseball is here, of which I'm a big fan!

We are in the right place at the right time. At home.

Saturday, January 23, 2016

The Antihero's Guide to Cancer - Redux

Hero (n) - a person who is admired or idealized for courage, outstanding achievements, or noble qualities

I've been considering what I wrote earlier, and I think it bears some clarification.

The main point I was trying to make was that often times I don't feel very heroic. I don't have the best attitude and fight in me. I didn't choose this fight. It's exhausting always putting on that brave face; because there are no breaks, no cease-fires, or vacations from it. At this point, with Multiple Myeloma there just isn't any threshold you cross such that you believe it isn't coming back. You bring it with you; at least I do.

What I am not (and wasn't) saying is that patients like me shouldn't be viewed as not having shown courage and noble (heroic) qualities. We have. Let me be clear (but not overly dramatic): anyone carrying the cancer diagnosis has borne a dreadful, unasked-for burden. It happens that it's difficult to paint a picture of for someone on the outside. It does indeed require heroic effort at times to cope.

This malady has pushed me well beyond anything I've ever had to deal with; pushed me way out into unfamiliar, and unsteady ground. I have much support from friends and family, but at times I feel utterly alone; but I think that is unavoidable. I suppose when faced with this dilemma one could pack it in and call it quits; otherwise throw in the towel. This isn't in my nature, however. I can't tell you on a scale of 1 to 10 where my rank is as far as coping, though. I've drawn on past experiences, some weirdly similar, to get through. I lean on my fellow patients.

For every ailment under the sun
There is a remedy, or there is none;
If there be one, try to find it;
If there be none, never mind it

My other point was: as a patient my options felt limited. You do what it takes to live and go forward; I really had little choice. I have a wife, three kids, parents, siblings, in-laws, friends. It takes courage, but it's a different courage than someone taking unrequired action like running into a fire to save a child or taking action on a battlefield to save someone else. Those require choice. Courage isn't the lack of fear, it's the decision to act in spite of it.

So in the end, this is why I would recognize the efforts of people like Jimmy V. They chose to go above and beyond their personal battles to give something to us. They gave the messages we need to hear, were templates for actions we need to try, the best to strive for.

Friday, January 8, 2016

The Antihero's Guide to Cancer

Antihero (n) : a central character in a

story, movie, or drama who lacks conventional heroic attributes.

I'm not an author, but if I were going to collect up all my stories, experiences, and accumulated wisdom related to my own Multiple Myeloma, I might call it, "The Antihero's Guide to Cancer".

When I was first grasping for something to hold on to at the beginning, I recalled Jimmy V's famous speech. I have an NC State University baseball jersey I bought at a charity auction some years ago; it's framed in my office, in view every day when I come downstairs: Don't Ever Give Up is the inscription on the back. And I remember some friends I knew that fought, or are fighting, this fight. These gave me inspiration to fight on.

Keeping up with the heroes is tiring, though. And guess what: I find it impossible.

We're not asked to be heroes. But maybe the encouragement to be one is in fact subtly there. Keep fighting; stay strong; you can beat this; never give up. So we try to be the strong ones, the find-a-way ones, the never-give-up ones. But this is difficult, extremely difficult sometimes. Most times I just want to be me, a plain, regular guy, not the guy.

Don't get me wrong, the messages are good and necessary: keep fighting, stay positive, never give up. I've heard them, and I've said them. But, I'm no hero, and some days I really feel like it. Some days the fight just isn't there, or the negativity, pain, and fear pile up; and these are the days no-one sees, except for those closest to you.
it's times like these you learn to live again
it's times like these you give and give again
it's times like these you learn to love again
it's times like these time and time again

-- Foo Fighters

This is the low place I repeatedly find myself falling into, and climbing out of. Cancer is a real battle, and it fights on many levels. Maybe with time I'll learn how to avoid falling, but for now I fall down and fight back up. Cancer tries to wrest from you your identity, your sense of control; it limits choices. I wrote earlier about this fallacy of control; you can't lose what you didn't first have. It's unsettling, however, to have yourself remade. And let's face it: cancer still carries a stigma even despite its prevalence. Meaning: it's embarrassing to say I have it. It instantly changes things between me and most everyone.

Nowadays mere day-to-day life seems so hectic, almost overwhelmingly so. Balancing work and the active lives of 3 teens is hard enough; then add in two major health maladies and their associated doctors visits, chemo, etc. Most days I feel like I'm running to stand still, even though I think my wife does most of the work. My dialysis takes about 10 hours, and while done overnight, takes a huge chunk of time out of my day. Used to be I'd sleep 6-7 hours, so that's 3-4 hours per day lost. Give that a try for about a week. So between that, ongoing doctors appointments, and working full time, I'm always squeezed for time. Precious time.

Our Cancer Heroes

I remember, too, that the real heroes had "those" days, also. Those days are the source of the messages, really, and it makes it that much more inspiring to me. We see the speeches, but we should be careful to not miss the monumental effort and courage it took to give it. Thank God they had courage, creativity, and energy to spare: for me.

It all leaves me seeming, well, like an antihero. But I accept their gift, they sacrificed much to give it. I try to see it as a gift, an ideal, the pinnacle of human spirit. If I can't reach it sometimes, that's OK. There perhaps will be days I can inspire someone else.

Here are glimpses of two of my heroes who happened to have cancer, too.

Our Caregivers

Finally, often overlooked are the other true heroes of the story: the caregivers. They play such a vital role in coping with the disease, and they are affected by it as much. They more than deserve their own speeches, but off hand I don't know of any dedicated to them. Here is a video, though, that I thought captures the dedication of caregivers, and celebrates them. Cancer is a equal opportunity abuser. It affects not only the patient, but also close family and friends. Being the patient is hard, but you really have no choice about it. Choosing to stand with someone, being there for them is hard, very hard. It's heroic.

I am thankful for my family and friends who have stood by me, and looked past the maladies, and found me.