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Friday, 24 August 2012 15:10

A Message of Love and Thanks Featured

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Hello All. There is no good way to break this news, but we wanted to let people know as soon as possible. Bud passed away early this morning. He passed peacefully after a long, and at times, arduous battle with pancreatic cancer. While Bud’s time on earth is done, the words he shared, the love he gave, and the hopes and fears he recounted here, will live on here, in loving memory of his life, his work, and yes his experience with cancer. Nic and I hope that you continue to use this space to honor Bud and his work.

For the last ten plus years, Bud has been a virtual soul. He thrived on his virtual connections, which became especially important and crucial over the past year. The conversations he has had via email, Facebook, and with Communication community inspired, enlightened, uplifted, and more recently, kept him going, giving him something to look forward to each day, adding purpose and humor and joy to his life. Nic and I cannot think of a better way to honor Bud than to continue that conversation. Please take the time to memorialize Bud here in whatever way works best for you.

Nic and I would like to thank you all for all the support we have received over the past year. The outpouring of prayers, messages of support and encouragement and your love kept us going and buoyed us through this incredibly challenging time in our lives. While we sincerely appreciate everyone’s love and support, there are a few people we would like thank personally.

First, everyone at Four Winds but most especially Monica, Lauren, Gerri, Jan, Terri, Bonnie, Ashley, Dr. Robin, and Dr. Sud who guided us through the last year with such love and compassion and respect. We cannot begin to express our love and gratitude for who you are and how much you all have meant and continue to mean to us. Thank you.

We owe immeasurable thanks to Alyssa for her love, patience, positive attitude, and willingness to do whatever was needed, often without us even knowing it at the time, throughout this journey. She helped us move (twice!) cooked, cleaned, ran errands, and provided us with endless entertainment. She has been Nic’s rock, my extra dose of strength, and too often, the go to girl for us both when errands needed to be run, but Nic and I were too tired to go ourselves. She didn’t have to do any of the hundreds of things, big and small that she did for us this past year, but she did them all with love, a sense of humor, and tremendous grace. Thank you Alyssa.

And to Mac who was always here for us no matter what we needed. He helped us move. Brought us food. And was always ready with a strong hug when we needed one most. Nic couldn’t ask for a better friend and Bud and I are so lucky to have Mac as part of our extended family.

We would like to thank Angela and Anna for their amazing friendship. You opened your hearts and lives to us, accommodating our schedule and limitations, filling our time together with laughter and fun. Thank you for being your wonder funny, loving selves. And to all the other ASU folks who emailed, stopped by, and supported Bud and by extension, Nic and I over the past year, thank you.

Thank you to Amira, Bob, and Nick for spearheading the amazing tribute book Celebrating Bud. Your efforts and those of all who contributed meant the world to Bud and the book is something Nic and I will cherish.

We would also like to thank Stewart and Carl for your visits, your long, long emails, and the love and support you provided to Bud, not just in the last year, but over decades of friendship.

And to Vikki and Harvey, thank you so much for your love and support. Thanks for being our friends and having our backs when we also needed you to be our doctors. Thanks for always being honest and for letting me know daily that you were and are here for us. And especially to Vikki for always making me laugh when I wanted to cry.

The same goes for Kris, who always seemed to know instinctively when I needed a virtual hug or a funny message and never failed to provide both. I know you wanted to do more and to be here, but being where you are and doing what you do is so very important. We get that and we love you for it.

Thanks too, to the wonderful caregivers at Hospice of the Valley. Cheryl swooped in on a Sunday afternoon to get us started, addressing all of our concerns, helping us to make Bud comfortable, and giving Nic and I the support we needed at exactly the right time. Tammy has been so caring and attentive of our needs and Sean handled the more delicate matters of after-life needs with astonishing consideration for our needs and Bud’s wishes. Everyone at Hospice of the Valley, helped to make this last step in a very long process much less daunting and far less overwhelming that Nic and I imagined. We are so grateful for your help and support.

And finally, thank you to my family – Martha and Clarence (Nana and Pop), Rick and Jackie, Kat and Liz, Connor and Tyler and Ashley, Tory and John Carl and Rosa and Thomas for loving us, praying for us, and for knowing when to be here and when to give us our space. Sometimes, not doing the thing you want to do most is the hardest thing to do. I know that being so far away during this time has been so very hard on you all. Thank you for giving us the huge gift of making this about us and what we needed. I know it wasn’t easy for you all, but we love you all the more for doing it.

We were so blessed to have had the time we did. Our lives have been forever changed by the past year. Our little family had so many conversations, talked about so many important things over the past fourteen months and a myriad of small things that, at the time seemed so insignificant, but down the road will add to our loving memory of Bud as husband, father, and friend.

One of the things we discussed was what kind of memorial Bud wanted. And Bud, being Bud, of course said that he wanted to be buried in a cathedral, like Shakespeare or Chaucer. After explaining that wasn’t really a possibility given he was not British or famous (his local fame not withstanding) or knighted other than by the queen when he was five, or a member of the Church of England, he decided that what he really wanted was to be cremated and have his ashes scattered at Grayton Beach. Grayton Beach has special meaning for us. It was on a trip to Grayton Beach he and I realized we were in love. As a family, we spent numerous summer breaks, New Year’s, and Valentine’s days and part of both sabbaticals there. It is a beautiful, historic state park that has not changed in years and, we hope, will remain unchanged for a very long time. And in the little village of Grayton, one of our favorite spots, The Red Bar, beckons for those who want to raise a glass to Bud’s memory, if you ever find yourself in the area.

But for now, we ask that you join us in a virtual wake of Bud. Wherever you are, raise a glass and toast his life and his memory. And rest assured, he will be smiling down on all of us and in true Bud fashion, reveling in all the attention.

Cross posted on Bud's Facebook page.

Wednesday, 15 August 2012 16:38

The Best Good Thing We Could Hope For Today Featured

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Doctor Robin’s assistant called us around ten o’clock to let us know that the Doc was a little backed up and needed to move our scheduled appointment from 11:40 to noon. No biggie, but nice of the Doc to call. Last time we had an appointment I had complained about sitting too long in one of the clinic’s hard chairs, but that was back when I was still experiencing pain in my back. That she remembers is not only another sign of her commitment to humane patient care delivered with compassion, but it is also another sign of her personal commitment to me. To us. To our little family’s well being.

Small things like this note that itself was probably jotted down on my folder matter a great deal to us because they underscore putting the patient’s needs and feelings first. Sure, I can now sit comfortably in a hard chair due to the success of the radiation treatment, but Doctor Robin didn’t know that yet. So instead of risking that I might be uncomfortable, she simply consulted her notes and had her assistant make a phone call. No biggie, as I say, for the Doc or for the assistant. But the call and all it represented meant the world to us.

This meeting this morning promised to be an important one. I have been off the chemo for over a month and I have completed the radiation therapy as well. I am working diligently to reduce my dependence on the narcotics and steroids. I have ended my use of the short-term oxies and with tomorrow being my last day swallowing the measly one-half tablet of the steroid, I will shortly be totally steroid free. So, I am making better-than-expected progress meeting these treatment goals.

That said, today our agenda is to review my most recent blood work and scans and together - San, Nic, the Doc, and I - to discuss “the next step.” That discussion will involve an estimation of what else should or could be done - if anything - to alleviate any remaining symptoms (e.g. pain, swelling, etc.). It might also involve a discussion of additional chemotherapy treatments, depending on Doctor Robin’s interpretation of my CA-19/9 marker in relation to other existing data. So, as I say, this meeting promised to be an important one.

***

Wednesday, 08 August 2012 16:42

Other Than That I'm Fine

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I have not cut back on some of the meds. Other than that I’m fine.

I mean there’s nothing to worry about. I’m doing fine. I’m also doing fine with the drug dosages too. I still take the prescribed doses of long-term oxy twice a day, Advil every six hours, B-12 and ALA twice a day, Prilosec once a day, and depending on the state of my “regularity,” and whether or not I needed to rely on one of those cutting-edge stool softeners and a powdered laxative, oh, and let’s not forget the magnesium.

I cut back on the painkillers:  half a 2 mg. steroid twice a day (down from two steroids every 4 hours); no short term oxy unless I need it (down from two pills every 4-6 hours); two rather than three Gabapenetin every 6 hours). So, as a result, I have slightly increased “the level of pain I sit with” but it comes with noticeably clearer thinking, speaking, and writing, not as much tiredness, increased mobility, and my good ol’ bad Dr. Bud sense of humor.

The pain they’ve left me with isn’t bad. It’s more of a dull ache that is occasionally yanked and twisted by a particularly mean-spirited kitchen or bathroom or great room or car troll. Or at least that is what it feels like until I stand up or sit down.

That’s when the troll with the really dull knife, the one with the well worn serrated edges, slices through the middle of my already-scarred abdomen, ripping and tearing more so than cutting.

I really should sharpen that knife. If only it weren’t imaginary.

But other than that, I’m fine.

***

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Tell me the truth: Has it been a whole month since we all last shouted “Rabbit, Rabbit, Rabbit!” for good luck? Are we really entering August, 2012?

The short answer to both questions is “yes.” Yes, it has been almost a full month since our last happy three rabbit shout-out, and yes, we are entering what will be my 15th month - our 15th month! - of living life as a cancer survivor. I am grateful, profoundly grateful, for that time.

***

No surprises then. As a Stage IV Pancreatic Cancer survivor, time is on my mind but not necessarily on my side. In part, this blog about my cancer is necessary because it represents unfinished narrative business and, as you know, I try to work through issues by writing to learn about them so I may share what I learn with others.

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Yesterday San and I met with Dr. Robin to listen to and talk about the results of the most recent CT-scans of my chest and abdomen, my labs, and what should be our “next step.” We drove to the Four Winds Cancer Clinic and agreed that no matter what the news might be, we would take a little time before agreeing to reenter chemo.

We figured chemo might be the only answer for the pain I was experiencing in my abdomen. But chemo has a downside, many downsides really, not the least of which has been a “loss of self,” which is a label I use to describe the longer and longer recovery time from a round of chemo, during which time I am basically “Dr. Bud in the chair” over there and not much else.

But not becoming the resident broccoli in the room was only one of our “end-of-life/quality of life” concerns.

Readers of this blog know that prior to that meeting with Dr. Robin, I was worried about what the scans might show, given the surprisingly sharp pain I was experiencing in my abdomen throughout the day and the strange spasms that woke me up at night. When a concern about pain emerges in our narrative it is always accompanied by a corresponding concern with time, as in “how much time might I have left?” It’s not a question with an answer. At least, not usually a good one.

***

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I awoke early this morning - about 4:15 a.m. - because I moved a little in my recliner and that set off a sharp pain in my guts. I grabbed my iPhone and switched on the flashlight app to find the prescription bottle of Oxycodone and bottled water, shook out two small white low dosage pills and tossed them back with a swig.

In about 15 minutes or so the pain gradually disappeared. Once it passed the threshold going down into the “no pain zone,” I could breathe deeply again without feeling as though I was ripping my stomach apart.

It was now 4:52 a.m.

***

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I place a Para Ordinance SSP 1911 pistol on the black coffee table.

It is a fine weapon and it is loaded.

When I teach my narrative writing seminars I begin with the Aristotelian or “classical” approach to structuring a good story and move through a history of literary innovations – structuralism, post-structuralism, postmodernism, and so on. My aim is to reveal to students the importance of craftsmanship to a well- told tale, where “craftsmanship” means how each part – the scenes, acts, characters and their attributes, and (if we are reading a masterwork) how every word spoken or silence retained, and of course the gun on the table contributes to the whole.

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Yesterday we got supremely good news from Doc Scott! For anyone who is reading this blog but may have missed the earlier post on FB, here it is:

Radiation 10 and we are at the end,

That tumor that pressed pain against the nerves along my spine

is now shrunk to nothing.

Nothing.

The word "nothing" never made me quite so happy.

 

Doc Scott says the cancer along the back is also "eradicated,"

And though there is still some pain - hey - there are also these little white pills to control it.

Good news! Yes! It really couldn't be much better.

Sunday, 08 July 2012 09:32

TrueBeam Dreams - a Poem

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While writng yesterday's blog post about radiation therapy i was inspired to commit to poetry all of the emotional stuff, the surreal stuff, that accompanied my treatment. For me, this is a happy poem, albeit with some recorded fears evident in it. But one way to counter the fears is to write through them, transform them through language. See what you think. 

As a side note I admit to beginning my wriitng life as a would-be poet. My first publication was "Sans Merci" (pretentious French, yes, but back then I was just learning) in the Shepherd College literary journal, and I used to participate in "original poetry" competitions as a forensics team member. Fact is I love poetry. I always have. Returning to it now is a joy and distinct pleasure. 

***

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This week we completed four radiation treatments and celebrated San’s birthday. I haven’t written about the radiation treatments and San didn’t want me to post the mushy love poem I wrote for her here, but suffice it to say that between being radiated (I am reminded of James Agee’s line about “the cruel radiance of what is”) and being a poet, I’d take poet every time.

Not that the radiation treatments have been that hard on me. Learning to live with cancer is learning to live with some pain, and between the meds prescribed to curb it and the small nuclear detonations along my spine and back to eradicate it, we have made significant progress.

***

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