When I started this blog I felt I should attempt it in a chronological order since most people seem to prefer things in that order. I tried. But I've gotta say, it's just not working for me. All through school I hated history because it was represented on every third page of the text book as a straight line with dated hash marks. It wasn't until I learned to lose the “timeline” that I learned to love history.
Rich is German so he perceives Time as fixed and linear--we move in one direction along the line, from point to point, event to event. We remember the hash marks of significance, and the spaces between the hash marks become dulled blurs of walking the line.
I, on the other hand, view Time as fluid and circular, like ripples on a pond. Now is the center of the circle where the tossed stone broke the surface...surrounded by a circle that is This Hour, surrounded by a larger circle that is This day, surrounded by a larger circle that is This Week, then This Month, then This Season, Year, Decade, Life. Depending on where I stand in the center, I can imagine the future, or remember the past, or experience all that is simultaneously happening within any particular circle. Which is not to say that I perceive myself as the Center of the Universe. I perceive Now as the Center of Time. I think that's why I enjoy rain so much...each drop breaking the surface of the water, creating it's own ripples that flow out and intermingle with the circular ripples of other drops. Rain reminds me that I am not the only drop that is experiencing the Now, and that my circles spread out and affect others.
All of this to explain that I can no longer continue this blog in a linear fashion. Going forward I will need to focus on the circles rather than the hash marks.
Allow me then to clarify. Rich was diagnosed with Stage Four Pancreatic Cancer on
March 10th, 2009.
Based on everything we could research, and Rich's desperate need for a hash mark on his time line, we were given September 2009 as the final curtain. What I later realized was that Rich wasn't asking when he was going to die, he wanted a time reference so he could figure how hard he had to fight, and how to calculate the hash marks of battle on his time line.
I was busy working out the circles...how many of the different stages of his garden will he be able to enjoy? how many rounds of golf will he have with his buddies (and me)? At what point in the circle of spring, summer and fall of 2009 will he enter the hibernation of chemotherapy and radiation? And how can I best utilize the circles around his hibernation? Perhaps it seems crazy to an outsider, but I was putting my faith in Western Medicine to deal with his Body, I was confident that my stubborn German husband had the Mind aspect in total control, so I was focused on Spirit. Rich and I have always been a team that way.
Circles aren't just measures of time. They're also the onion skin layers of our life. The rings of a tree aren't just the measure of time of each season, but everything that happened in that season—rain, drought, fire, toxins, abrasions of the bark. Wounds that heal over and fresh new growth.
Today is August 12, 2010, Day 521 in the Land of Stage Four Pancreatic Cancer. It is more than a straight line of appointments, procedures and treatments. It is circles and ripples on a pond. It get's worse before it gets better and it gets better before it gets worse. It's a helluva ride. If you're lucky, the person on the seat beside you is someone like Rich. I have learned two things.
Number One: Live in the Now. Survive the now when it is horrific and savor the now when it is bliss. You will have both. Do not rush either one because you can't be certain how many more times you will be able to share anything. And I assure you that when it is over, you would crave 10 minutes of the horrific just to be holding his hand.
Number Two: NEVER BE AFRAID. Fear only weakens and destroys—do not waste your time and energy on it. Nothing is accomplished in the name of fear. You can deal with anything that Life brings you. Life will never bring you fear—that's something you have to invite yourself. Don't.
If you ever love someone so much that experiencing this level of pain feels a small price to pay...then you are truly blessed.
I am truly blessed.
Thursday, August 12, 2010
Tuesday, August 10, 2010
Scarey Words
Stage Four Pancreatic Cancer.....
I say those four words out loud (or write them) every chance I get as you've probably noticed.
There's a reason.
If you keep your scarey words (whatever your scarey words may be) locked up in your head, they will play in your brain 24-7, feeding on your fear, growing daily more powerful until they've got a full-blown party going, and any good party will draw a crowd, so the next thing you know you're not just dealing with those four scarey words. Now you're entertaining entire sentences, scenarios and certainties. There are so many guests at the party they can no longer be fed on the Present so you start drawing on the Future. And where does THAT lead?! That's right, the Land of What IF?!
That, my friend, is the path to ruin—a muddy, slippery, rutted road, dotted with mud puddles that are in fact quick sand. Even the moss-covered rocks along the side of the path are dangerous and deceptive. You think it's a soft place to take a rest and regain strength, but in fact it is a Pity Party Lure. Because in the Land of What IF, there is no regaining strength—there's just the occasional Pity Party Pause along the edges of the Road to Ruin to distract you from the Grand Ball going on inside.
Before you know it, and without a warning sign at the curve, your spirit is weakened and you are careening towards Despair, which is just a downhill slide towards Resignation. And then you're done.
The first few hours and days after the Stage Four Pancreatic Cancer appeared we said those words a lot. They almost became one word. We repeated them out loud to ourselves, to each other, and we used them exactly and precisely each time we had to let someone know what our new path was. We didn't plan, discuss or decide to do this. One does not usually plan ahead for the intrusion of BIG scarey words. It seems that at first it was simply a matter of disbelief. We had to say them out loud to make it real in our minds. You don't go from vital, healthy, and active to Stage Four Pancreatic Cancer in the blink of a cholesterol check and CAT Scan without some element of disbelief.
We did flirt with total Denial, but we ruled that out almost immediately. If the whole thing WAS a mistake, Denial wasn't going to help; if it wasn't a mistake, Denial would definitely hinder us. Denial dismissed and we began thinking clearly.
One of the first things we discovered, quite by accident, was that saying the scarey words out loud made them less scarey. Not sure exactly how we stumbled on that. I think it was visceral. Each time we said the words out loud, the words became easier to say. Therefore, each time we said the words out loud we were less stressed and fearful—blood pressure, pulse, and breathing all slowed accordingly. Our physical bodies were responding to the fearless power that grew each time we said the words out loud. As our power grew over the words, Stage Four Pancreatic Cancer weakened—at least in our hearts and minds. And really, isn't that where the real battles are won and lost?
Within 72 hours Rich took my hand, looked me in the eyes and said calmly and certainly, “this isn't going to beat me. I have cancer; cancer does NOT have me.”
Okay. Admittedly brave words from someone who has not yet faced three liver biopsies, major surgery, chemo, radiation or the shit storm that comes with all of the above. But I am not the only witness to the credibility and steadfastness of that statement. I further assure you that no one can claim otherwise.
We had gained so much power over the scarey words that by the time liver biopsies, 24-hour urine tests, multiple blood draws and daily Reiki treatments had transformed generic Stage Four Pancreatic Cancer into a rare form of neuro-endocrine cancer.... it just didn't seem to matter anymore. Another liver biopsy and more bloodwork to confirm that they still weren't “SURE” of what they were dealing with... and it just didn't matter. While the medical professionals were replacing These scarey words with Those scarey words, we kept focusing on healing and protecting us from Any scarey words.
We had a great team of professionals in place. I had done my version of background checks on all of them and was satisfied that they were our best hope for battle. We discussed every step with them, but the bottom line is, it's a leap of faith. We knew we couldn't do this alone, but we also knew we had to stay active and in control. You for damn sure can't walk that tightrope with heavy, scarey words trying to trip your balance.
So you dismiss the scarey words and discard the labels and focus on restoring Body, Mind and Spirit to a state of Balance. The result is that you transform from victim to warrior...the first step to walking in grace.
I say those four words out loud (or write them) every chance I get as you've probably noticed.
There's a reason.
If you keep your scarey words (whatever your scarey words may be) locked up in your head, they will play in your brain 24-7, feeding on your fear, growing daily more powerful until they've got a full-blown party going, and any good party will draw a crowd, so the next thing you know you're not just dealing with those four scarey words. Now you're entertaining entire sentences, scenarios and certainties. There are so many guests at the party they can no longer be fed on the Present so you start drawing on the Future. And where does THAT lead?! That's right, the Land of What IF?!
That, my friend, is the path to ruin—a muddy, slippery, rutted road, dotted with mud puddles that are in fact quick sand. Even the moss-covered rocks along the side of the path are dangerous and deceptive. You think it's a soft place to take a rest and regain strength, but in fact it is a Pity Party Lure. Because in the Land of What IF, there is no regaining strength—there's just the occasional Pity Party Pause along the edges of the Road to Ruin to distract you from the Grand Ball going on inside.
Before you know it, and without a warning sign at the curve, your spirit is weakened and you are careening towards Despair, which is just a downhill slide towards Resignation. And then you're done.
The first few hours and days after the Stage Four Pancreatic Cancer appeared we said those words a lot. They almost became one word. We repeated them out loud to ourselves, to each other, and we used them exactly and precisely each time we had to let someone know what our new path was. We didn't plan, discuss or decide to do this. One does not usually plan ahead for the intrusion of BIG scarey words. It seems that at first it was simply a matter of disbelief. We had to say them out loud to make it real in our minds. You don't go from vital, healthy, and active to Stage Four Pancreatic Cancer in the blink of a cholesterol check and CAT Scan without some element of disbelief.
We did flirt with total Denial, but we ruled that out almost immediately. If the whole thing WAS a mistake, Denial wasn't going to help; if it wasn't a mistake, Denial would definitely hinder us. Denial dismissed and we began thinking clearly.
One of the first things we discovered, quite by accident, was that saying the scarey words out loud made them less scarey. Not sure exactly how we stumbled on that. I think it was visceral. Each time we said the words out loud, the words became easier to say. Therefore, each time we said the words out loud we were less stressed and fearful—blood pressure, pulse, and breathing all slowed accordingly. Our physical bodies were responding to the fearless power that grew each time we said the words out loud. As our power grew over the words, Stage Four Pancreatic Cancer weakened—at least in our hearts and minds. And really, isn't that where the real battles are won and lost?
Within 72 hours Rich took my hand, looked me in the eyes and said calmly and certainly, “this isn't going to beat me. I have cancer; cancer does NOT have me.”
Okay. Admittedly brave words from someone who has not yet faced three liver biopsies, major surgery, chemo, radiation or the shit storm that comes with all of the above. But I am not the only witness to the credibility and steadfastness of that statement. I further assure you that no one can claim otherwise.
We had gained so much power over the scarey words that by the time liver biopsies, 24-hour urine tests, multiple blood draws and daily Reiki treatments had transformed generic Stage Four Pancreatic Cancer into a rare form of neuro-endocrine cancer.... it just didn't seem to matter anymore. Another liver biopsy and more bloodwork to confirm that they still weren't “SURE” of what they were dealing with... and it just didn't matter. While the medical professionals were replacing These scarey words with Those scarey words, we kept focusing on healing and protecting us from Any scarey words.
We had a great team of professionals in place. I had done my version of background checks on all of them and was satisfied that they were our best hope for battle. We discussed every step with them, but the bottom line is, it's a leap of faith. We knew we couldn't do this alone, but we also knew we had to stay active and in control. You for damn sure can't walk that tightrope with heavy, scarey words trying to trip your balance.
So you dismiss the scarey words and discard the labels and focus on restoring Body, Mind and Spirit to a state of Balance. The result is that you transform from victim to warrior...the first step to walking in grace.
Sunday, August 8, 2010
Your Friends - Part TWO
You Find Out Who your Friends are....PART TWO
I know I “went off” on the frustrations of dealing with friends and family. I feel bad that it came across as pretty negative. I feel the need to make amends...
On the positive side, discovering your true and new friends more than makes up for the disappointments. Way...WAY more.
The day after Rich was discharged from his very first hospital stay we received an edible bouquet from Keith and Angel. Rich and I both shed some tears of joy and gratitude with that. His appetite was shot and this gift, between being beautiful, fresh and delectable was perfect beyond words. We were like two kids at Christmas and he ate a good third of it the first day. Two days later he savored the last bite.
Some messages on the machine simply stated that we were being prayed for and “please don't feel you need to call back unless there is some errand or chore we can do for you.”
After his surgery in May, Rob Pyett, a high school buddy that Rich had recently reconnected with brought him lunches, which made it easier for me to be at work. In fact Rob and his wife Mary sat in the waiting room with me during surgery, and during recovery, and kept me from assaulting the resident who wouldn't pull the catheter that was causing writhing pain in Rich's bladder. One day the Pyetts brought Rich lunch, got him comfortably seated on the back patio and proceeded to spread eight yards of mulch over his beloved garden. No easy task since the entire load had been dumped in the front yard and had to be moved, one wheelbarrow at a time to the back, around winding paths, in sun and heat.
One day Terry Nelson left a covered dish and bouquet of flowers on my front doorstep.
Denise Ellsworth put the word out to her network of Master Gardeners and within three months time Rich received over 300 cards in the mail from all over the United States--sending hope, prayers and encouragement in the lovely way that gardeners speak to gardeners.
I don't want this entry to be a grocery list of all the acts of kindness we've experienced. You'd “have to be there” or it's plain long and boring. I just felt the need, today, to focus on the positive side of this because sometimes the pain and exhaustion threatens to rule and I find that the best thing to do at these times is to switch gears and remember the joy and magic that we have been blessed with. I have not even scratched the surface of the kindness and blessings we have received.
I hope that you will want to continue this journey with me. I have so much to tell you that I believe will be helpful, not just for cancer, but maybe for any struggle that feels likely to crush your spirit. When first dealt the blow, you reach and search desperately for answers, help and hope. Most of what is available seems focused on the “patient”. A few sources deal with the “care-giver”. Like we are two separate people. We're not two separate people. The cancer is localized in Rich's physical body, but in truth, we both have Stage Four Pancreatic Cancer. Unfortunately, few people seem to understand that except me and Rich, and the true friends who recognize and honor that we are One.
I know I “went off” on the frustrations of dealing with friends and family. I feel bad that it came across as pretty negative. I feel the need to make amends...
On the positive side, discovering your true and new friends more than makes up for the disappointments. Way...WAY more.
The day after Rich was discharged from his very first hospital stay we received an edible bouquet from Keith and Angel. Rich and I both shed some tears of joy and gratitude with that. His appetite was shot and this gift, between being beautiful, fresh and delectable was perfect beyond words. We were like two kids at Christmas and he ate a good third of it the first day. Two days later he savored the last bite.
Some messages on the machine simply stated that we were being prayed for and “please don't feel you need to call back unless there is some errand or chore we can do for you.”
After his surgery in May, Rob Pyett, a high school buddy that Rich had recently reconnected with brought him lunches, which made it easier for me to be at work. In fact Rob and his wife Mary sat in the waiting room with me during surgery, and during recovery, and kept me from assaulting the resident who wouldn't pull the catheter that was causing writhing pain in Rich's bladder. One day the Pyetts brought Rich lunch, got him comfortably seated on the back patio and proceeded to spread eight yards of mulch over his beloved garden. No easy task since the entire load had been dumped in the front yard and had to be moved, one wheelbarrow at a time to the back, around winding paths, in sun and heat.
One day Terry Nelson left a covered dish and bouquet of flowers on my front doorstep.
Denise Ellsworth put the word out to her network of Master Gardeners and within three months time Rich received over 300 cards in the mail from all over the United States--sending hope, prayers and encouragement in the lovely way that gardeners speak to gardeners.
I don't want this entry to be a grocery list of all the acts of kindness we've experienced. You'd “have to be there” or it's plain long and boring. I just felt the need, today, to focus on the positive side of this because sometimes the pain and exhaustion threatens to rule and I find that the best thing to do at these times is to switch gears and remember the joy and magic that we have been blessed with. I have not even scratched the surface of the kindness and blessings we have received.
I hope that you will want to continue this journey with me. I have so much to tell you that I believe will be helpful, not just for cancer, but maybe for any struggle that feels likely to crush your spirit. When first dealt the blow, you reach and search desperately for answers, help and hope. Most of what is available seems focused on the “patient”. A few sources deal with the “care-giver”. Like we are two separate people. We're not two separate people. The cancer is localized in Rich's physical body, but in truth, we both have Stage Four Pancreatic Cancer. Unfortunately, few people seem to understand that except me and Rich, and the true friends who recognize and honor that we are One.
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