Being almost sick, almost better

The one-year anniversary of my liver transplant was Sept. 21. I like that the transplant happened on the autumnal equinox, when day and night are balanced.

I look for signs. Because of a slightly gimpy leg from childhood polio, I am perpetually seeking literal balance in my world.

I am comfortable with ambiguity, dissonance and the absurd. However, I like my transplants to be straightforward, with no metaphors or artistic conceits in the room.

But still, I look for signs.

In some cultures they look for signs in the entrails of goats. Here we read biopsies. I have had four of them this year, and they affirm that I'm not the man I was hoping I would be by now. Too frequently I'm out of balance.

Being almost sick, or almost better, is my new normal. I will never have the energy or be dependable enough for any sort of work. Every day is monitored. Yellow eyes and skin are looked for. Food is tabulated. Excretions are noted. Twenty-three pills a day are meted out.

All of this to determine whether I am worse because of something I did, or because of the big viral roller-coaster ride, or because it's the beginning of the End Game.

The most reasonable woman in the world — my wife — never complains. She feels some disappointment for what this disease is robbing from us, but chooses to be glad for what we have. Therefore, our lemonade cup runneth over. She continues to save my life every day, in a hundred ways.

On the day of the transplant surgery, I had been filled with hope and nervously excited. On the anniversary, I felt lousy. I could barely stay awake, and I had a bad case of doom and gloom. I had no appetite for cake and ice cream. The day before the anniversary, and the day after, I felt pretty good. Two steps forward, one step back. Seeking balance.

Gift of a liver

I had been on the waiting list for more than two years when the hospital called that September morning to tell me of an organ that was right for me. A fine family, deep in their grief of a sudden death, had allowed for the gift of a liver.

And then it was out with the old and in with the new. It worked.

Recuperation was not easy or painless. For the first three months I could see weekly progress. But mostly I felt terrible.

Then it got worse. My skin and eyes turned a dull, blurry yellow. My skin itched so badly that I couldn't sleep.

My liver enzyme numbers were bad, way out of balance. For no apparent reason they would get worse, then stabilize.

After a transplant, the hepatitis C virus remains alive and as nasty as it wants to be. Studies predict that 5 percent of transplant patients who have hepatitis C will experience a hyperactivity of the virus, causing too much damage too soon.

There has been no organ rejection (thanks to four of the pills I take every day), but the expletive-deleted virus that destroyed my original liver was coming around again, like back taxes on a broken house.

I was very scared. They told me I had every right to be. They were grim. I could hear my heart beating. They said they were very unhappy. I said, "I am with you on that point."

They said, "Interferon."

I said, "Oh, please don't say that."

Five years earlier, I had declined Interferon treatment because the side effects are so dreary, laced with severe depression, flulike symptoms and bone-marrow depletion. And besides, the success rate was about 25 percent.

No, thank you.

Interferon, essentially chemotherapy, has cured hepatitis C for some people. Doctors don't know how long the virus will stay dead, but there have been promising reports. There is no other cure. Post-transplant, the success rate is about 18 percent.

Bah.

A temporary victory

So three months after the surgery, things looked pretty bad. The doctors suggested a different immunosuppressant medication than the one I had been taking. And they lowered a high-tech gadget and a fluoroscope down my throat to swab out clogged bile ducts and get the enzymes to behave. I didn't know it at the time, but it was a last-ditch effort.

And it worked. My enzyme levels were normal within six weeks.

I had dodged the Interferon bullet, and I should be extremely glad, because Interferon is pure hell on wheels, they said, making ugly faces.

I said, "Freedom is on the march."

It had been a very hard four months. At last I was feeling much better.

Balanced.

Dreads and dreams

This new liver ain't broke. But I know that it's only a matter of time until I have to use the hammer of Interferon to fix it.

One of my doctors says I should take the Interferon now. The other tells me to enjoy my life. He thinks that sometimes Interferon can do more harm than good. Does he mean that life without Interferon might be more pleasant, but shorter? I didn't ask.

It is possible that a person can live for a long time with bad liver numbers like mine. But there is no chart, hardly an average, and never a promise.

You might say, "Don't be such a wimp. Take the Interferon. What doesn't kill you makes you stronger. Maybe it will clear the virus."

But it has taken me so long to feel this good. Interferon has been blown up to be so horrible that even as uneven as things are today, I'll take the known rather than an unknown.

With apologies to Fannie Lou Hamer, the civil-rights godmother who said it first, I am sick and tired of being sick and tired.

I had a biopsy at the end of last month, and we're hoping that recent episodes of yellowing eyes and skin are caused by a clogged bile duct that can be cleaned out, postponing the Interferon at least until my next biopsy, in four months. But if it's not the duct, it means the virus is back in town, and Interferon will have to be discussed with greater urgency.

I feel pretty good these days, but I have too much fatigue. Often after breakfast I need to lie down for 20 minutes to two hours. Frequently, the day's activities are scheduled between naps.

But, oh, the dreams I have! It's almost exhausting. I have dreamed two complete original plays. One night, I swear, I heard the full cut of "Jack Johnson" by Miles Davis. And dreams from last night and years ago come to me all day when I am awake. I may be living half a life, but the half spent in repose is quite busy.

Still, I am dogged by thoughts of death. If I write, or plant a peony, or paint, I imagine people seeing my handiwork after I have joined the choir eternal, and murmuring words of dismay. I don't want to be missed. I'd rather be celebrated.

It's hard to talk about death with my wife. One thing at a time. We both know the potentials.

It's a good bet that I will not live to be an old man. That's what I am now at 59. I am writing my book, "Hepatitis C, Blah Blah Blah," a wise-guy's tour of dealing with the disease. I take eclectic walks, have amiable lunches with friends, play with the neighbor kids, paint, and nap.

Not all in one day. I try to work on my book first, before the naptime bell tolls. Renewing my driver's license, or cleaning up the tomato patch, would mean getting out of bed two hours earlier. That seems impossible.

Of love and laughter

Have I changed? You bet.

For years I saw the transplant as being the only port in the storm. Now I am in open water on a flat Earth, and I am drifting toward the precipice. It's a matter of accumulating good days and bad.

They say this kind of challenge can make me a better person. Do I love my fellows more than I used to?

A friend said I have developed a greater capacity for depth, and for tuning in to others. Another says I am nicer now, and that I was not as nice of a guy as I thought I was. So here's some balance I could do without: I continue to mature, while I anticipate a premature death.

I am better at understanding the quality of time as a beautiful unfolding. But I am deeply concerned about the quantity. Both my parents are alive. I want to outlive them.

Everyone has questions about how to live their lives. I think the simple answer — and it had better be simple — is that love is the answer. It's the real bottom line. To work and to live in terms of love is the best. Doesn't everybody know that? You shouldn't need a book to understand it, or lose a loved one to figure that out.

Finally, what is important to me, personally, speaking for myself as an individual, is to be able to laugh. I am determined to be the gentle jester of your days, whether you like it or not. I've been practicing for a long time and I think I'm pretty good at it. I get pretty good reviews.

"I can be brave"

So ... Do I do the Interferon or not? It's not much of a question. I don't think I have a choice. The question is, will I be able to laugh when it hurts? And the even bigger question is, will I be able to laugh if it doesn't work?

Sometimes my wife will poke me in the ribs while we're walking down the avenue and say, "Hey! You have had a liver transplant. Our dream came true!" Otherwise I can forget. How is that possible?

Sometimes I forget to take my pills on time. What am I, crazy? The surgery scar has faded. My plumbing is excellent. I can eat almost anything. It's easy to forget.

I am humbled, and forever grateful to the donor, my wife, her organization, CityClub, our friends, the doctors and nurses, and even the miracle of my own body. I am a fortunate and loved man. I am scared, but I can be brave.

I am approaching balance.

Jack Slater was born in Chicago, graduated from Calvin College in Michigan and worked for 20 years as an actor and humorist and was a teacher in the Seattle school district. He has been a community and political activist and is an avid artist and gardener. He lives in Ballard with his wife, Deborah Swets, the executive director of CityClub.

You can reach him at jslater@seattletimes.com.

Seattle Times photographer Alan Berner can be reached at 206-464-8133 or aberner@seattletimes.com.