Recovery from Rat Years

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Some days it’s great to be me.
Some days it sucks to be me.
It is what it is.
I know only this:
I am in metamorphosis, like Kafka’s Gregor Samsa who woke up one morning and had turned into a big bug. I’m changing now into a new human being with brand-new potential and desires. But I have been Gregor the Bug lately. (And was a Survivor Rat while I was sick.)

In October 2016, about five months after a successful liver transplant, I started feeling odd. Mentally. Emotionally. Since I’m used to moving through those kinds of things fairly quickly – processing through sadness and worry in a week or so – I just went with the flow.

But the usual things weren’t working and I wasn’t coming out of my funk. Instead I had metamorphosed nearly overnight into this useless, awful bug. I’d tell myself should be happy: You have this awesome new liver, and you don’t have to worry about this long grocery list of nightmares anymore, like…

  • Hospitalizations popping up at the most unexpected times
  • Procedures that were the biggest pain in my life
  • Scary events like 12-plus hours of internal bleeding, defying death
  • And god-only-knows-what-other-complications from what should have been just the “normal” hospitalizations from yet another liver infection, and trying to die then, too

I was relieved of all that. And I was having good weekly lab results and the lab visits weren’t too disruptive.

The funk continued. I’d cry a lot. I worried about money. I began having serious motivation problems. I could not get up off the couch and do anything, no matter how much I really wanted to.

Then I had a panic attack one afternoon. I was crying for an hour solid for no apparent reason. What in the hell? A friend asked, “Are you having a panic attack?” I don’t know. I’ve never had one before. What’s it like? Like this. Well, shit. I want it to stop. Now.

I made an appointment to see my internist. She agreed on the panic attack idea, prescribed a few Xanax and referred me to a therapist. This all started in early November, and I saw the therapist the first time on November 21, exactly six months after I’d gotten the call to go to Cleveland to have the life-transforming transplant.

The therapist said, after hearing a compressed version of my story, “I think you’re depressed.” Oh hell no. I don’t get depressed. I get sad for a few days, work it out, then I’m back to whatever is normal for me.

She insisted. I continued to disagree. She saw me for a handful of short visits then referred me to someone I could see long-term at, get this, the Depression Center. I came close to flat-out refusing just because of the name. Get. Out. I pictured a huge, windowless black monolithic tower with its own nasty weather at the top of it.

While all these events were unfolding, I was sitting on my ugly yellow-ish couch at home (I sold that couch) doing absolutely nothing. Maybe a little walking, some Facebook lurking, journaling, reading. But no more writing on any of my projects. Nothing.

It was the flatness and the paralysis I hated most.

Then I realized one day:  I’m trying to run this depression diagnosis the same way I dealt with a liver disease diagnosis. Denial. That might work to some extent for a physical illness. But this, this seeping cloud, undertow, silent but powerful rip? Nope, denial wasn’t going to work. I fought the diagnosis, but I did accept I was grieving the loss of 11 years of my life, all my dreams and goals I’d had before illness struck. I had to give up on all of them. That hurt, a lot.

So how long, I asked, is this grieving thing, depression, whatever you want to call it, going to take me to get over? I was pissed. I had big dreams I’d built into post-transplant, too, you know. This is shit. I wanted to be way into the writing of the book of my transplant journey, and hoping for it to be a guidebook for others on organ waitlists. I yearned to be physically strong again. This was my dance time, but now all I’m up for is sitting on an ugly couch and resisting every urge to get up. Where did my get-up-and-go get up and went? I didn’t even feel like looking for it. I cried a little but I didn’t know why. I just knew my heart ached and I was running out of money for this nonsense.

I kept going to the therapist. I think I performed for her. But sometimes the curtain wouldn’t go up for my act and I was left needing tissues to clean up the snot and tears.

I felt highly embarrassed and guilty. This felt like Big Ingratitude. I didn’t want, most of all, my transplant coordinator Tracey and the rest of my care team at Cleveland Clinic, to know what I was succumbing to. I couldn’t imagine a worse response to such an incredibly beautiful, generous gift. And hell, I didn’t want anyone to know.

But finally I told Tracey and she said, yeah, hon, it happens sometimes. But you’re strong, really strong. You’ll get through this. And I got off the phone and cried some more. Relief. But I still wanted someone to tell me How long. Please. Hint. Throw out a date. I don’t care (as long as it isn’t, in my estimation, too long), just something to shoot for.

I didn’t get a date. But I finally had some rumblings, tiny movements towards a sliver of light. It was so subtle I don’t have any concrete signs to describe. Just itty-bitty nudges, hints I was moving slightly out of my cocoon.

It took almost nine months to gestate into this new being I am still growing into. The bug part has sloughed off and I’m back to life. But this time it’s the new life I began on May 22, 2016, my rebirthday. I feel again like I did post-transplant, with that one phrase running through my head: This is a miracle. It started up as soon as I came out of my post-surgery drug haze, and was a drumbeat always thrumming, reminding me what had just happened. That beat is back, the writing is back, and the new me is evolving.

“…what brings healing is the integration of the past with the strong healthy person you are now. And it may take longer than you think.”

 – Blood Orchids, Toby Neal

 

 

 

 

 

 

 

 

 

 

 

 

 

 

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Living Like a Rat

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“Be like a rat. A rat will do anything to survive.”
—Paul Theroux, Hotel Honolulu

I’ve lived like a rat for a couple of long episodes in my life. Decades at a time, not just a few months. I know people who have lived like a rat for a few months. And others who have done it their whole lives. I don’t know about others living like that, but I didn’t choose that style because it appealed to me, seemed really attractive. I chose it – or it chose me – because I was gnawing to survive. I would do anything I had to do. And I did a lot of things I look back on now and don’t feel pride in them. Except I was, and am, proud of surviving.

But here’s the thing. When you can finally get out of survival mode, it’s hard to stop acting and feeling and seeing yourself as a rat. Rats don’t relax, kick back, see and enjoy beauty – or even look for beauty. Aesthetics is not their deal. Getting a break, making a little headway on any front is what they’re after. It means winning at whatever struggle you’re in.

I am still transitioning from an eleven-year period of real serious illness that involved a hunt for a liver transplant. The disease itself takes a lot of work just to survive. You need a steady roof over your head, health insurance that will take you all the way through transplant, steady income, and support from a group composed of family and friends. A car helps. Except for the support from people, everything else is tied up in money. And you have one, sometimes both, hands tied behind your back to get money.

Once the disease started up, I was shocked at how fast the fatigue set in. And that translates into less or even no work, depending on what you were doing for work. So you get creative. Or, the rat kicks in. Here you are, three to six months into a long-term disease, years from a transplant and the end of it, and you’re already living, thinking, acting like a rat.

How does a rat-human think and act? Here’s what I did. I pushed aside thoughts of illness, any shred of sympathy or softness for myself, and lived mostly in denial. Of illness, disability, taking it easy. I did do things to make sure I was eating okay, taking the meds and supplements the doctor prescribed and recommended, and avoiding the things she told me to avoid (nightshade vegetables, a lot of common herbs, and especially no Chinese mystery herbs). I was compliant.

I was one year into a three-year graduate program and stayed in to complete it. But might have been better off trying to get a good-paying job then. And forget about doing anything even vaguely related to teaching. I was stubborn and determined. Sort of like a rat, but in that instance about the wrong stuff. I could have used some advice then. But probably wouldn’t have listened anyway.

A good rat, a clever rat, would have told me flat-out, “Go for the money. Forget anything else. You have to survive this shit and you need money for it. Not meaning or poetry. Get a grip. Get back to being a rat.”

Eventually I did have to return to Being a Serious Rat when I lost out, in my tenth year of illness, on my sixth potential live donor for transplant. Now, even the rat didn’t like the Live Donor Thing. Even a rat doesn’t like asking people for part of one of their most important organs. That’s over the top even for a rat. But the doctors kept saying, “It’s the only way you’re going to get a transplant.” They left this part out… “before you die waiting.” This time they were the rats. I didn’t want to personally know the person giving me a whole or even part of a liver. Did. Not. So the rat finally spoke up again – tap, tap, “Hey, find a transplant center where they allow anonymous live liver donors.” I asked for help from a huge agency who knew everything there was to know about transplants, and found four centers in the United States who offered exactly that.

I finally got the transplant. A year ago. From a different transplant center in a state 1,500 miles away from Colorado. The rat in me got there in one piece to meet everyone, be evaluated, and put on their waitlist. When I was told I was on the list, the transplant coordinator also told me, “Dana, we’re going to be looking for a liver for you.” No one had ever said that to me.

I could actually stop being a rat because everyone there was helpful, supportive, compassionate and exceptionally competent in everything they did at this center in the city that was home to the Rock and Roll Hall of Fame. Then I only waited six weeks before they called me – “Come on up, we have a liver for you” – and sent their private jet to pick up me and my friend. The rat took off. I didn’t need rat qualities anymore.

Now, I’m recovering from those Rat Years. A few months after an incredibly successful transplant with a split liver (a large liver was surgically split and two recipients got new livers and lives), I found myself inexplicably sad and anxious. Seems there were rat reverberations left behind. It’s hard on a human to be a rat. To scratch that hard to survive. To try to forget who you are and deny yourself comfort. It makes a human angry and hateful and, yeah, even depressed. Rats have no time for depression, just its active symptoms like anger and anxiety and sleeplessness. I’m having to excavate, with care, my hidden self that loved beauty, sought meaning, read poetry and strung words together for others to read and enjoy. Yet, I thank the rat for saving me for this day.

God, I want comfort.

An ending and a beginning

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When I met with Dr. Koji Hashimoto and Tracey Reynolds, RN, my transplant coordinator, last week in Cleveland, I had a list of 20 questions for him to answer. He said, “Wow,” and then wow again when he saw it was three pages long. I’m curious…

But he took on almost every question, and the three of us chatted for about an hour. In an exam room, out of the hustle and bustle of the clinic. The first question (I’m not going over all of them) was about how many surgeons, who was the anesthesiologist, how many nurses and assistants.

There were a total of 13 to 14 people in the OR at all times. There were two staff surgeons – Dr. Hashimoto was number one and Dr. Masato Fujiki was second in command. There were also two surgeon fellows (I believe – no residents, I know that). Two or three anesthesiologists, several scrub nurses and assistants and a perfusionist.

A perfusionist is better known for their role in cardiac surgery for running the heart-lung machine when the patient is without a heart. That person monitors blood pressure, heart rate, breathing and all related matters. There was a period of time when I had no liver.

I was amazed at the number of people there for the whole ten-hour procedure.

I asked who dictated the operative report and Dr. Hashimoto grinned and said, “I did! Do you want a copy?” Wow, I hit the jackpot. Of course I did!

Other items of interest –

  • There were no pictures of the old liver (right lobe was atrophied) or the left lobe of the new liver I received.
  • Dr. H. made the first incision, on the left side of my abdomen extending up to the midline and then down on the right to just above my waistline (I don’t think surgeons call it the “waistline,” just sayin’).
  • The first incision took place at 2:42 pm on 5/22/16, and was closed at 11:13 pm, 5/22/16 – nine-and-a-half hours. I went up to the OR around 11 a.m. so there was lots of prep.

There were two paragraphs in the report that made me weep. When I read “We mobilized the liver,” I knew what was coming. And four short sentences, one dissection and five transections of blood vessels later came this – “…to complete recipient total hepatectomy.” My now-disconnected old liver was then lifted it out of my body. End of that journey.

Then there was some merging of hepatic veins between donor and recipient to “create a venous cuff for anastomosis,” and then this next paragraph:

“We brought the new liver in.” I stopped there for a long time. I’m pretty sure Tracey was in the OR, too, because she told me how they hooked it up to me and it “got all pretty and pink.” Dr. Hashimoto wrote, however, “We reperfused the liver without difficulty.” Same as pretty and pink!

At the end of my questions, I had written a favorite quote of mine from “Four Quartets” by T.S. Eliot, Little Gidding V:

“What we call the beginning is often the end
And to make an end is to make a beginning.”

 I’ve carried that thought around in my head since I read “Four Quartets” in 2006, when I was first diagnosed with liver disease. What was the end? What was the beginning? I believe there were many of each. I know this surgical ending and beginning marks a brand-new life for me. I am beginning.

I stumble. I get lost and confused. But I have more energy, more determination, more stamina to get up and move and even sprint sometimes. And I’m not weighed down by illness anymore.

Getting to that point on May 22nd, 2016, was my hero’s journey. I made it. I’ve returned home, changed. I still have challenges and I welcome every one of them. Everyone has a chance to be their own hero in their life’s journey. I’m not sure you know you’re in it till you reach home.

tellhashimotowhatyoureallythink

This is Dr. Hashimoto’s idea of a great photo op! Yes, post-op in ICU, pissed off because I was still intubated – and drugged out of my mind! He carries it around in his phone and shows it to people. Here’s gratitude for your 10 hours of intensity, and 2,000+ other transplants. Yeah, I’m badass.

Vision

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I don’t have a single idea for a blog post which is due today (Thursday). Not one. I’m filled with anxiety about my eyes and see the ophthalmologist next Wednesday morning in Cleveland. She’s going to measure my ocular pressure again and who knows what else. Then give me the lowdown. What happens next, prognosis, maybe surgery to slow it down, all that kind of stuff.

Thinking about vision a lot since I saw Dr. Singh a month ago and she gave me these two words: severe glaucoma. I think of others who have it, who had it. I had a great Aunt Wixie Parker who was Head Librarian at Chapel Hill main library. She lost her eyesight to the “thief of sight,” and I understand she was pretty pissed off about it. My father had it, too. He had peripheral vision.

Jorge Luis Borges, poet and novelist from Buenos Aires, probably lost his sight to glaucoma at age 55. He continued as a librarian at the Naciónal Biblioteca in his hometown. He also had a butler and a cat and a nice house he owned in the city.

Bono has had glaucoma for about 20 years. I like the glasses he wears and want some like them. The light hurts my eyes a lot and enough exposure to it makes me very tired.

Whoopi Goldberg has glaucoma also. I heard she smokes marijuana to keep the ocular pressure down in her eyes. But I’ve read that you’d have to be pretty stoned all the time for it to really work. So I’m not sure if that’s true about Whoopi.

I take two different eyedrops daily now. The new one I got last month from Dr. Singh I take twice a day, 12 hours apart. My pressure in my right eye last month was 22, pretty high. Just 16 in the left eye.

Here’s the twist. I took a ton of prednisone in order to keep my new liver. A whole lot. That is probably the reason my eyes got so much worse than where they were. What are you going to do? I wanted that liver. Bad. It wasn’t my idea to take the prednisone, by the way – but you probably know that. Sometimes shit happens.

I just want to ask a seemingly unrelated question. Why doesn’t American health insurance cover vision, hearing and our dental health? All three matter a lot to a person’s overall health. And all three are expensive to care for.

 

 

Changing Daily Habits: On Going From Illness to Health

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You wouldn’t think it would be hard to change your daily habits once you got healthy after being sick for a long time, right? I complained for a lotta years about not being able to do so many things, many of them that had just been habits of daily living; I was sick and very fatigued all the time. Eleven years worth of fatigue, and messing up what used to be some pretty great, regular habits. I was pretty excited to get back to my normal self.

I’ve been reading about habits and how they are formed, changed, and messed up in this book called The Power of Habit by Charles Duhigg. It’s a popular book and it’s well-written, based on scientific studies of the brain, groups, teams, individuals, animals; people like good habits, or at least to think about them. I like good habits, but I recently discovered, maybe a couple of months ago, that I’ve got some pretty crummy habits. Not just little ones or a very few. A lot of them and they’re major habits, too.

One of the discoveries the scientists made about habits is that they are based on three pieces of information: the cue, the action, and the reward. Yeah, they did studies on monkeys and all that. Then on people, too, especially in trying to help them change an annoying habit – like smoking or nail-biting or drinking excess alcohol.

I do not bite my nails or smoke cigarettes or drink any alcohol. But now I do procrastinate and I just sit when I think of something I want to do. When I was sick, doing a whole bunch of stuff (yes, even writing) made me very tired because I was always baseline tired. My reward for no activity was not feeling so tired, so I felt rested. I was not entirely satisfied with that, though. In fact, I was pretty pissed off about it. But the habit is still with me even though I would rather feel satisfied that I did the activity. And have a sense of completion and competence. In fact, that was exactly what that “want to do something” cue looked like before I got sick. My reward was that deep sense of satisfaction of completion and competency and sometimes even excellence.

Once I had that awareness that something was really amiss, I told a good friend about it. She had also experienced a very long bout of chronic illness and the lights came on for her, too, when I told her about this thing. Now at least I have someone to talk to about it. It is hard to develop a habit and to change a bad one. It takes, in the end, something they’ve identified as belief. It can be belief in God but it doesn’t have to be anyone or anything religious. You can believe in your team, or the group you belong to (even my small group of two), or simply that “everything is going to work out.” Yes, there is the practice of the habit, but they kept finding alcoholics falling off the wagon when something really awful happened in their lives – and they would revert to drinking again. In other words, they had first stopped the drinking without belief in anything, so they weren’t well-grounded when something catastrophic happened.

I’m trying to make it easy to get the good habit back. And believe everything will work out. But some days when I look around at the end of the day and I feel not enough has been done (as in EVERYTHING), I feel pretty disappointed in myself. Then I listen to music or read for awhile or do some writing. I watch movies, too. And say out loud, “Everything is going to work out, Dana, so just chill.”

Why I Want to Stay in Denver • Why I Want to Move to Cleveland

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I’m a bit torn right now between staying and moving. What I am doing and the way I’m leaning depends on who I’m talking to or walking with or what activity I’m involved in at the moment.
When I have to go out into the 110% bright sunshine in Denver, I feel like moving. It’s exhausting now with the condition my eyes are in. Even sitting indoors with only filtered light coming in, I’m squinting. Then I think of that statement – “Cleveland is where all the clouds went to die” – told me by my oncologist. And I think, hm, Cleveland sounds really good right now.

    • When I see the gold aspen leaves lying on still green grass and still blossoming flowers of both summer and fall, I want to stay in Denver. Forever.
    • When I look west and see the snow-covered peaks, especially Mt. Evans standing at 14,000+ feet, I most definitely want to stay in Denver and anywhere in Colorado. The beauty is overwhelming, all year long. It is – and this is one of my favorite words – pulchritudinous here, almost to the point of being ridiculous.
    • When I think of all the great medical treatment I have received at Cleveland Clinic and will continue to need (eye surgery will be next to slow down the progression of glaucoma), I want to move to Cleveland and live in Cleveland Heights or Shaker Heights, both great neighborhoods. No more traveling twixt Denver and Cleveland – no packing, shuffling to and fro airports, paying airfares, Uber and Lyft fares. Find a pet-friendly place, and Violet and I sell or just get rid of all our stuff (except essentials like treats and favorite socks), then pack once and be done with it.
    • But, and this is the BIG BUT, when I think of all my friends here, favorite pharmacists, favorite waitress and my favorite Thai restaurant, my hairdresser Roger (omigod, Roger!), my vet (not Monica!), did I mention friends?, favorite hamburger place (Larkburger), favorite Starbucks (the big one in REI at the confluence of Cherry Creek and the South Platte River where you can watch kayakers paddle upstream into the rapids, endlessly), my favorite park in the whole world Washington Park, and did I mention friends! When I think of all those people, places and things, I’m not sure I can leave Denver. Ever. It has been home since May 1985. 31 years.

Possible Solution: Make a whole lot more money, rent an apartment in Cleveland, too, and fly back and forth whenever. I would write real hard and fast and well to get to that solution. I am also open to any other ideas or solutions … or suggestions of potential benefactors!!!

“I believe that the very purpose of our life is to seek happiness. That is clear. Whether one believes in religion or not, whether one believes in this religion or that religion, we all are seeking something better in life. So, I think, the very motion of our life is towards happiness…”
—His Holiness, Tenzin Gyatso, the 14th Dalai Lama

heinensceiling1

Ceiling at Heinen’s Grocery Store, Downtown Cleveland

To My Forever Friend, Josh Halberg

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When I started this blog, it was devoted to writing about chronic illness – mine and others. I think I want to expand that now that I have a new liver, and I’m officially a transplantee. So now I write about that.

Every transplantee believes that their new organ will last another 25 years. No one says that, but in their own minds they believe it. Otherwise, what’s the point? Especially the young ones believe that. I think. I don’t know, because I was 68 years old when I got my new liver. But I was thinking 10, maybe 15 years. Yeah, that’d be good. A younger person might go for the 25 or even more.

I don’t know how old Josh Halberg was when he got his first transplanted liver, or even his second one. I know he was suddenly very ill when he was 22 years old, his parents took him to a nearby hospital, they discovered a large tumor on his liver and said he had two weeks to live. Two weeks! And he was 22. But he didn’t die, and he ended up at University of Colorado Hospital in their transplant center soon after. He received a new liver within a fairly short time after that. But that still could have been a few years; the waitlist there is long. I am positively certain, though we never talked about it, that he was thinking along the lines of 25 years, maybe even longer. Then the PSC recurred. He had the same liver disease I did. My friend Adrienne Baker, who also had what became a chronic illness trying to kill her, called her disease “craptastic.” I liked that word, seemed perfectly descriptive, so I called PSC craptastic as well. It is. It’s cruel and it does really mean things to people’s lives who have it. You’ve heard that litany from me, so I’ll spare you. Josh had what most other PSC patients had along with it – an intestinal bowel disorder, and his was ulcerative colitis. Really, really craptastic.

Josh didn’t complain a lot, though. He didn’t used the words I did to describe his digestive system disorders. He was smart that way. But sometimes he confessed to me that he felt like his faith was pretty small and he limped through those times. I despaired in the face of the immensity of his faith, and that’s how we talked about it. I think he was trying to make me feel better and bigger about myself. It worked, and my faith would grow every time I talked to him. Just a little, but it grew.

He finally got another liver in August 2014. I remember seeing the announcement on Facebook. He was at work at Rocky Mountain Urgent Care Center, where he worked hard as an EMT, taking care of other people with fairly minor things going on. Another staffer, a good friend of his, snapped his picture right after he’d heard the news and before he left for home and then the hospital. He was a little pale and grey in the face, but he had a huge smile on his face. He was happy and everyone around him, everyone who knew him was thrilled out of their minds for him.

I’m certain, absolutely certain he thought, wow, another twenty years or so of life without being sick. But it was two years and one month. Is that fair? Hell no. Nothing at all fair about it. Did he live those years like he had a whole bunch more years out in front of him? Hell no, he didn’t. He traveled all over the world – sometimes with his parents, but now most of the time by himself. He went to exotic countries, remote countries, really fun places like Puerto Rico, then out to southern California where he was born. He always mentioned going to an In’n’Out and what burger he ordered; he loved that place. He had to be gluten-free all the time, but he managed to eat everything he ever wanted. And would try some of the most disgusting foods on the planet. On a very recent trip to China, he selected a really creepy-scaly-looking scorpion or lizard (photo on Facebook), thought he’d eat a leg or something small and said it turned out to be a thick yellow crunchy goo. I’ll never ever forget that description. Ewwwww, I told him on Facebook.

After I learned of Josh’s passing this past Friday morning, September 30, 2016, I fell into a tailspin. Eventually I thought of that first sentence in the second paragraph I wrote about thinking, we transplantees, we had 25 years on our new livers. Wrong. We all, all of us humans live on borrowed time. And some do a better job of it than others. Josh is a paragon of how to live no matter what your odds are. He also traveled a lot after his first transplant and after recurrence of PSC, with his wonderful parents, Todd and Candie Halberg, all over the world. Constantly, it seemed. They were grand adventures. Josh lived large. And in love. I hope that kind of living for all transplantees, for all my friends and family, and for myself.

I learned a lot from Joshie, my friend. And he changed, forever, my perception of life and death and illness and how to best live a human life. Thank you, Josh Halberg. You will remain in my heart forever, whispering, urging, inspiring.

“To me, poetry is somebody standing up, so to speak, and saying, with as little
concealment as possible, what it is for him or her to be on earth at this moment.”
—Galway Kinnell

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