In Memory of a special soul 11/1/16

This is a letter I wrote to John Martin, MD who’s dedication to his life’s work began saving my life since Feb/2011 through Nov/2014, and continues to care for others like me. No one can see the tears of gratefulness I’ve poured out because of him but their joy have been released into our world of suffering.

Dear John,

I know its been a while and I can only hope that this new email address is correct. If you have any new contact info you would like to send me, I would appreciate it. I hope you, Angela and Owen (an probably by now another child) are all well and thriving.

I couldn’t sleep a few nights ago which opened the door to get a cold, go through various crazy symptoms (as this particular body is wont to do) and come out okay again. But tonight I woke up again in the early morning hours to remember that Today, two years ago, I was on a plane coming back from Chicago following the Halloween day I wished I didn’t have with you doing your last and most amazing ERCP! I just read the report on it again. Wow! I am learning to read so much between the lines. In the same moment, I am so, so grateful for what you provided me and hope I never stop staying in that gratefulness. This little note is In Memory of You.

I can only assume that you are not in the loop about my progress anymore. It would be too much to follow all the people you have cared for but I thought I’d just reach out and shout out to you what’s up a bit. Maybe you read it, maybe not but Life is so much about just putting it out there without concern for results…kinda like love.

Quite a journey for both of us. On Nov 28, 2016, Byran Balmadrid takes out the year long stent procedure and I begin to live the great experiment without the props again. The stents have given me one whole year without significant ‘issues’ and I have enjoyed the vitality and learning what it’s like to not have my life go into the tank every few months. I have a certain growing amount of internal ‘freedom’ that informs me to be and give more unconditionally than ever. One of those manifestations is to go back into teaching. I’ve renewed my teaching certificate from 38 yrs ago and have found work substituting almost everyday in our local schools and so love to be with kids and educators again. I still see a few patients at the end of the days just in case God wants to make something more significant out of that someday. I don’t know where else this will lead me but it’s all very good. I am still committed to writing a memoir and have poured a fair amount of work into that very challenging endeavor.

We shared so much through our journeys with out kids. I’ll attach a pic of Clare and me just in case you may be interested. I made it to her high school graduation! Which was perhaps the driving force to make it through all I’ve been through. She is a sophomore in college and really thriving there. I couldn’t be more grateful. Yes, now I am setting more goals for our future that will keep me reaching but peace is already mine and all this is just…extra!

I wish for you the goodness, God can bless on us from time to time keeping us held as in the arms of a great parent watching a child grow. You are a very special soul and I continue to be blessed by your life.

Pat

This pic was taken a while back before the stent process was started (everyone says I look much better now) but it has very special meaning to me.

8/21/16 2 yr. Anniversary of a most amazing Life

Well isn’t Life so amazing…ly wonderful sometimes. At this point I’m appreciating not being compost.

Last night 2 yrs. ago (August 19, 2014) Roni, Mary Bassett, my sister, Joni Sandy and I were finally on the eve of the transplant scheduled to begin basically at dawn the next morning. I’m sure their imaginations, hopes, anxieties, preparations, prayers from the days, weeks, months and years leading up to this moment in time were pretty dialed up. Me? less so. After all I had had already many years of pretty significant anxiety, suffering, ups and downs, some near death events, parents dying, losing control of basically everything in my life on every level, had prepped many times by then for my ‘leaving’. 8 weeks prior I had an unanticipated open heart surgery and recall thinking that that was the toughest thing I could ever imagine getting through. There were more than a few times that I doubted I had the strength or remaining liver function to make it. My biggest dream then was seeing my daughter, Clare graduate from high school. As I said though, at that point I was as ready as I could be and wanted to get to the next morning. I can’t remember whether I slept that night tho. 
But these three amazing women were that beginning wave of support around Roni and I. And we sat on one of the beds in that apartment overlooking Lake Michigan and prayed the most moving prayer of my life. Actually, Roni and I just let go and let Joni and Mary pray. They must have been channeling everyone else! From that moment on it seemed for me and I’m pretty sure Roni would agree, all the butterflys inside us were flying in formation. 
As some might recall, we arrived at the hospital before dawn, were prepped, IV’d on our gurneys ready to go. Then there was a parade of nurses coming in saying everything was on hold because our transplant team hadn’t finished transplanting another person in the middle of the night because a liver became available. When that happens, they don’t have a lot of time. They just have to do it to save another life. The delay crept on for a long time and finally our team representative came in and said the transplant had been called off for the time being. They took all our IV’s out and released us with no timeline for when an opportunity would come again. Truthfully, they could not tell us anything; whether it would be a day or a couple of weeks. We went back to the apartment stunned. I have to admit that at that time, I began to get anxious because I knew and I knew that Roni knew that she only had a relatively small window of time when she was available to do the transplant and the unexpected heart surgery had closed most of her window already. So, we just sat around that whole day leaning in to the phone hoping we would get a call and some new frame of reference. It had to have been after 5PM when you begin to think that everyone at the hospital has gone home when the phone rang and they said to get ready again for the next morning. What a tremendous relief! but my sister, Joni had to leave because her window had closed. But her son, Nick called out of nowhere. Nick is a most remarkable young man about the same age as my step-son, Nick (late 20’s then). He was flying to another big event for one of his best friends in Michigan and rerouted to Chicago to make this surprise hour long visit of support for me. Roni, Mary and I were back on!
And here we all are two years later! By that I mean you (you all), me and Roni!! Roni is doing fabulous. I just have a feeling that one day she’ll tell her story and share it with the world too but in the mean time…isn’t Life so amazing!
You might send Roni a little lovin’…if you want. 

8/2/16 Follow Up on Transplant progress

8/2/16
First of all I want to thank so many of you who sent me your good wishes and fun thoughts. Here are a few words about the ‘results’ of all those intentions.

The ERCP again was very successful. Stents replaced, no complications. Blood values are almost all back to normal, and following those has been for me interesting to see in relation to how I’ve felt and function. But Dr. B was in there so long doing so many micro activities that those delicate tissues aren’t used to that I feel like I’ve gone a round of body blows with Joe Frazier for this past week.
Had a long talk with Dr. B to find out how rare my situation actually is and how many of him there are who do what he does. Crazy small data base. I am extremely fortunate to have gotten this far without more complications let’s just say.
The stents will be removed in 4 mos and the real test starts. In the mean while I am experimenting with creating a more functional life with work, etc.
Of note on a more social level in late June I went back to the midwest to celebrate and be with dear friends at my high school reunion (50th). Then followed that by a family reunion of sheer joy except that one of my sisters couldn’t be there because she had taken her life fairly recently from a very long debilitating disease. We celebrated her life with a funeral and following her last wishes she knowing we would be having a reunion without her. There is another story there obviously but here I can say that she was an inspiration to me and one of the most amazing people in my life not only as a sister but a friend.
May all this continue to lead us all to more and deeper appreciation and engagement of what’s important in life. Roni is doing great by the way as we approach our 2 yr. anniversary. “Hi, Roni!”
Gratefully present still,
Pat

7/20/16 PreOP Post

7/20/16
Hello, everyone of you lover/follower/believer/hopers for me, Clare, Roni and those who consciously engage in or have engaged in this most remarkable process of healing and faith and life!

Gotta Go…again to Seattle for several items of interest that I am again requesting your thoughtful regard of. I think you know what I mean by thoughtful regard; the grateful, intentional, sometimes prayerful, sometimes head-wagging, always optimistic, sometimes conditional and sometimes unconditional place.
I fly to Seattle on Sunday, July 24. Meet with my all-star, interventist, Dr. Balmadrid followed closely by his replacing those lovely little stents with hopefully bigger little stents on Monday morning. Followed by several diagnostic tests on Tuesday and concluding with a big pow-wow with my liver guidance team on Wednesday for a 2 yr. follow up when we might begin a process of lowering rejection medication and looking once again into the crystal ball.
To review a bit: each of these interventions gets a little riskier even though Dr. B gets more familiar with my rather weird, internal plumbing. After all I’ve had over 15 of these procedures in the last 6 years. That doesn’t include the open heart surgery, the transplant or the abdominal obstruction surgeries. I was getting a lab draw on Monday and my phlebotomist, Angela (who’s poked me personally uncountable times)(I call her ‘my’ because of this. She started giving me hugs somewhere along the way…then I started giving her hugs because she had to have a very invasive back surgery to stop a rapidly progressing scoliosis which by the way was successful), anyway we were kinda joking about one of my veins getting a little hard to poke through maybe because of the uncountable number of blood draws I have had. Oh, and I will be finding out when they will finally pull the stents out for good.  If I used a school analogy it would be likening this whole process to taking pop quizzes, mid-term exams for a class that has lasted 6 years and now I’m coming to the Final, where the whole grade is dependent on just this test.
I’ve come to realize that throughout this entire gig to this point and more poignantly than ever from this point on; I have lived with a rather loud ‘clock of uncertainty’ ticking in the background. Before all this, like most of us, I was basically going through life with a clock that didn’t make noise yet quietly marking the journey. It gives me pause daily to be aware of just what is important, really.
The book is taking it’s time to become obvious what I am attempting to say and most importantly to whom. Let’s say, I have a great deal of respect to those who write about significant things, personal things and a crazy amount of awe for those that do it for a living. You are who I write to so far. To write about my faith and your faith in the context of my life is the real task. And then to write to a reader that doesn’t know me at all and hope to offer some hope or inspiration.
Hey, please throw me a little lovin’ again and I hope some of you can send me a thought or two about your life or mine.  I’d love to hear from you who.
Gratefully present,
Pat

Healing inspires new life. 4/19/16

Hi, I’m still here and all things considered, I am thriving. Just being here is truly mind-blowing miraculous! That being deeply acknowledged, I give you a brief recent update on what has transpired then just launch into a short view on going forward. At this point, there is a dwindling readership as there should be because the roller coaster ride of near death to resurrection is over for now. 

One month ago my great G.I. interventionist, Dr. Bryan Balmadrid at Harborview Medical in Seattle performed again one more of a more and more risky ERCP to replace the stents previously placed and expand the duct opening even more. He has great goals of expanding this formerly failing duct system in the hopes of a self-sustaining solution that will be tested beginning at the end of 2016 when all the stents will be removed and my system will be ‘on its own’. In the meanwhile I a am enjoying my stability and growing vigor!

This stability brings with it for me enough certainty to begin moving forward with rebuilding my vigor and developing a ‘resurrected’ life. I say that with a joyful heart not intending to be dramatic or create ……… illusions.

I definitely am immersed in the creative endeavor of writing a memoir of this journey. There is discovery that it is for reasons still unknown but some of which might be described as ‘for other transplant patients, for acknowledging so many caregivers along the way, for attempting to acknowledge the miraculous, for touching on the inspirational, for my own therapy psychically, for the creative challenges’ and other reasons yet to be bumped into.

I have been mulling over whether I could go into doing healthcare work again. The conclusion reached was ‘Yes’. I’m going to show up in my office again. I am and am not really the same person. The Journey has provided much new experience; many new lessons and insights; new perspectives; new drivers and dreams that want to find a way into the lives of others in meaningful ways. I am opening my office this week. What shape it takes on is evolving but I know it will have more depth, more quality, more substance.

The support system around me I think is relieved of the attentions they have provided over these last 6 years…I know I am. People ask me regularly, “How is Roni doing?” We talk pretty regularly and it has become obvious to me and she even acknowledges that she is more ‘on fire’ than ever with her life. More driven, healthier, more fit and more wonderful. I hope that all my caregivers have been touched by that same life giving force because they all surely stepped into it with every thought, word and deed with me along the way. 

 

 

 

 

 

 

 

Arguably great and beginning a Memoir! 2/20/16

Since my last post a whole lot of living has happened! I am so grateful. For those who have been following this ride, to feel this good (and I’m not saying I’m perfect) and for this long!…it wouldn’t take very much to push me to tears.

I couldn’t explain so much in any great detail so let me more or less list some highlights. You can comment or call me if you wish more depth.

The stent replacement ERCP last November has been holding up and giving me as good of health and function as I think I can expect which is fantastic all things considered. Still have the hand/arm neuropathy and some smaller issues but this is great! The weather is beginning to turn and I’m on my bike occasionally, playing some very active table tennis, working out more, etc.

What once was uncertainty and not being able to predict how the day might be is turning into a schedule that is starting to fill in. I have a part time job as an usher a few evenings a week. Minimum wages suck but I am grateful. Apparently no one would hire me because I was overqualified, my resume didn’t make normal sense for most employers or maybe they were saying to themselves, “why is this type of guy looking for this type of work?” Who knows? But I’ve never had to work not doing my calling for 35+ yrs.

So to shorten this:

*I’ve slowly discovered that I am even more capable of going back to my calling as a doctor and physician again. I’m getting relicensed after dropping it for the last two years! I plan on going back to my office and opening sometime in March. This journey has ‘retooled’ me in ways unpredicted. More on that later.

*My daughter seems to be thriving in college! I’ll see her again at spring break. My step-son has moved back to Boise from years in foreign lands and experiences. It is really fine having him so close again!

*I committed to starting a memoir and signed up for a memoir workshop at our local writer’s literary center, the Log Cabin. Enclosed below is my first attempt at a preface. I’ll take no editing comments but am happy to hear your general like/silence feedback. 🙂

*The next stent replacement procedure is scheduled for March 21 in Seattle. If the current one holds up til then, I’ll be very encouraged about the year ahead!

*My spiritual life and community is and has been enriching on so many levels. Praise the Lord! I’d encourage anyone to read, Love Wins by Rob Bell.

*It has not all been a bed of daisies though. One of my sisters, Pamela, took her life on Dec 31. She has struggled with her life being taken away from her over a very long time and she felt she could not bear anymore suffering. Our other sister, Joni and I went to Florida to take care of her affairs after her body was discovered two weeks later. I don’t choose to go into what it was like for us then. But we believe and trust she is in a much more wonderful state now.

 

                                   Preface for Memoir

The idea for writing a book didn’t come from me. It came

from many people who witnessed parts of the journey I was on. It

came along somewhere when the stack of medical records reached

several inches deep.

 

I find myself wondering why I just used the

word ‘deep’? I could have used the word ‘high’ yet ‘deep’ flowed

onto the page without the least hesitation. Maybe it’s because

upon reflection on the times I’m going to share with you, the

essence of deep flowed through every cell of my body for a very,

very long time. Deep took over my body as a disease, broke

through and had it’s way with every part of my life. My mind and

emotions were just along for the ride.

 

Deep is a simple, straightforward word but right in thinking about this ordeal

I get images of open wells or pits or caverns. Childhood images of darkness and places

that are dangerous where you are not supposed to play.. Curiously eery

places. It’s dark down there. You can’t see the bottom.  It’s a long way

down. Feelings of fear and the unknown.  When you are on the

edge of a long way down don’t you feel like you are going to fall in?  What about

that crazy, exciting feeling of dropping something over the edge?

 

When I was a boy and later as a man I experienced being in caves, being

on the edge of cliffs. Once in Hawaii on the island of Maui I went up to the

top of Mt. Haleakala, the great former volcano. There is a vast crater at the

top. I’m standing at what seems like the top of the whole world in the middle

of the Pacific Ocean looking down into what was formerly a smoldering

ocean itself of fire and lava. And by the way, just across a short expanse of

water is a real, live, active volcano on the Big Island of Hawaii that I visited

days ago. Hot, creeping lava was coming down the beautiful landscape, over

roads and  finally into the ocean!  Slowly growing the island by  making  a new,

black sand beach.

 

From the top of the world the crater was very deep looking down into it.  I heard tell that

there were lava tubes beneath the surface that you could hike to.  Not something very

many people do apparently. You have to be committed to want to go there.   I heard tell

that there were lava tubes beneath the surface that you could enter.  So I hiked in.  It

quickly turned into not only a physical but an emotional journey.  The further I hiked down

the more the entire world I had ever known disappeared.  When I landed on the surface of

the crater it was an imagined moonscape.  I couldn’t see living things anymore.  I had

never been to a place anything like this.  It grew more and more into an emotional

experience.  I began my decent into a lava tube. It became dark, very dark, darker than the

darkest dark I ever didn’t see. It is not like the dark of the night without stars with eyes

closed kinda dark.  It’s darker!  I turned on a headlamp to guide me. It wasn’t easy walking.

As I walked, and one could hardly call it walking, more like scrambling , I could see dark

passages going off in mysterious directions.  The tube I was in was big, larger than I

expected.  Taller and wider than two or three people standing on shoulders. I went maybe

100 yards in.  The distance seemed…forever. It was silent. Silent like the darkness was

dark.  The spooky factor dialed up the deeper and further I went…and then I turned off my

headlamp.  That’s when I decided to welcome whatever was going to come, take me,

use me at that moment, in that place, deep in mother earth.  When I turned off the

light the darkness I spoke about rushed in full tilt followed by the silence.  A

p(P)resence engulfed me. I can say the f-word here, ‘fear’… it says it all.  I didn’t move. I

don’t know why or how but it wasn’t quiet anymore.  First, that sense of fear brought

images and subtle sensations, maybe sounds even, of hell…of fire and boiling lava  that

seemed might start flowing any minute from which way, I’d never know.

I wanted to run as fast as I could to get out of there…but that’s irrational, so I sat there

until the intense fear began to subside.

 

My breath returned.  Then the silence returned.  I felt I was in a giant womb…but

that part of the story is for later when it’s not deep anymore.

 

 

12/22/15 Great Outcomes at Holidays

A Very Merry Christmas/Solstice/Holyday Time to You!

As you might surmise, I’m very, very joyful, engaged and blessed to be here now as I am!
I now have enjoyed about 11 weeks feeling pretty darn wonderful! Only have to get poked for blood once a month…a big Wow! My veins are so happy! And last week’s poke show normal values in all the important areas which matches how my liver function is doing. I can easily walk/hike 1-2 hours now. Able to do normal core exercises, men’s push-ups, rake up and bag wet leaves for a couple hours, endure cold weather normally again, get my apartment temperature down more (71F) to where it used to be (68-70F). I am able to fall asleep pretty consistently before midnight and get up before 9am which is a huge improvement. I think it is important to also admit for those of you who go through crisis situations or know someone who is going/gone through crisis, that one typically loses libido. That has returned in the last 11 weeks too and without saying much more…it’s a good sign and a fundamental sign of…life, passion, good things to come. There are still areas of dis-ease but these seem to be driven mostly by the anti-rejection medication. I don’t have much control over that but at the two year anniversary mark in August/2016, the transplant docs will begin to lower those meds. That will possibly lessen the side-effects of neuropathy in hands, arms and feet.
Confidence is again growing in energy, trust in life’s wonderous ways and desire to go and do. It is difficult to communicate but there has been a deep, sometimes insidious anxiety present for years where it would be difficult to trust the moment, to be hopeful because for so long it seems the ‘rug would get pulled out from under me’ when I would start to feel better. It is with great joy that Hope has returned. But as with our human experience, we never know what the future will bring.
Recently I have come to several directions I want to move in. One is to pursue the memoir writing (or writhing) process. I signed up to take a workshop in memoir writing and have begun reading memoirs to learn more about the how to’s. Next, I am planning on going back into the healing arts as a physician on a mission. I figure since Life has tweeked me over the years here, I’ll be able to offer a more comprehensive experience for those who might be led to come for “growing their health”.  I am planning on re-joining my former office partner, Edwin Floyd, in providing what he has mentored me in. Hope to be able to begin in late January or so. More on that later. Maybe you all who have been following my journey wouldn’t mind me getting more specific and invitational about it later.
Again, berry merry Christmas/holidays to all,
Pat
P.S. The fundraising goal has been reached of $10K!Thank you, Thank you. There is no adequate way to express how deeply relieving it has been to not have to worry about expenses I could not afford. You have given me this opportunity to not only be alive! but to thrive. God is Source. God is good…because in your own ways, you choose and allow Source to motivate your lives. Keep finding ways to lift up others in need. None of us knows when that might come back to bless us.