July 9, 2005 (Jim)

July 9, 2005

I’m not sure exactly what hour of the day it was, but it was June 29^th and I had just settled in my seat on Southwest flight #164 from Seattle to Nashville. The flight attendant had just said we can take out our approved electronic devises so I dug my laptop out of my briefcase to begin work on this update. Next to me, two young guys tore into their backpacks to retrieve game boys. We all settled in for the 4+ hour non-stop flight. The boys were both leaving their mothers and traveling to spend the summer with their dads, both dads are soldiers, both stationed in Kentucky, and both have already served a term of duty in Iraq. For a moment I thought how foreign all this was to the childhood I knew in the 50’s and 60’s. Then I started thinking how foreign this year has been for my family compared to what we might have expected.

I am sorry to say that for me, flight #164 was only one more flight I had to make alone. Even though we had marked this departure day on the calendar for the two of us, had purchased the airplane tickets and laid out the plans; even thought I had desperately hoped that my beautiful bride would be sitting next to me the next time I crossed the country, it wasn’t to be.

I know many of you thought we were home. While I was in Nashville for a week I ran into a number of friends who when they saw me, smiled, ran up and asked “…is Janice glad to be home?” “Well,” I would reply, she would be but we hit a snag, and once again (as in so many times in the past) the demon side effects of her cancer treatment changed our plans. So – for those of you who thought so, hoped so, then learned “not so,” here is a quick review of why Janice is not home yet:

June 8^th – In a doctors office, Janice fell and hit her right knee, causing it to swell up the size of a softball and turn her lower leg black and blue . . . certainly a damper on physical therapy.
June 9^th – At clinic it was discovered she had a slight fever. That, combined with a three week lingering cough caused great concern. They ordered a CT scan of her lungs and found spots. They immediately admitted her to the hospital (transporting her via ambulance), where she stayed for six days…no we weren’t kidding when we said we really, really wanted to go home.
June 10 – 15 – They did a broncostopy, (four, 4-inch Q-tips up one nostril followed by a camera up the same nostril, down her throat and into her lungs). By now I have seen the complete inside of my wife’s colon, lower digestive tract, the inside of her sinuses, throat and into the second level of her lungs, much more than I ever expected I would see the day I married her. Two shots of saline shot up her nose to force the dribble they needed to harvest for testing. Instead of packing bags for home, Janice was hooked up to endless bags of saline and antibiotics, etc., etc., etc.
If that weren’t enough…On Sunday during her hospital stay we discovered that she had CMV Viral pneumonia, remember the virus I mentioned in my last update? The one related to the herpes virus? Well…it’s back. Additionally, they found “a colony of mold” in her sinuses. Even though the sinus thing and the pneumonia thing were slight, they decided to treat it all as aggressively as possible, to make sure there were no more problems.
After leaving the hospital, after treating the pneumonia and fighting the “colony of mold” aggressively, Janice left with yet another IV regimen of 18 - 20 hours a day. In the morning in the clinic it was hydration then antibiotics…then every other day an additional 2 ½ HOUR infusion of antiglobulin to help fight the CMV virus in her lungs and prevent it from popping up someplace else. Then, home we go to start bags of hydration and antibiotics that I hook up for her. These pumped into her until the early morning hours of the next day.
HERE COMES THE GOOD NEWS! In the middle of all the treatment Janice honestly started feeling better. After a couple of weeks she no longer needed a walker to walk; she began doing nicely with her cane, and the muscle tone began to return to her legs and arms.
Here’s how we best measure progress. Janice even started complaining about needing a hair cut, a tall-tale sign of improvement. And within a week of getting out of the hospital we were actually able to go out to diner with friends, albeit hitched up to her hydration pump carried in a lovely black nylon backpack. The other good news that came about then is this: Despite pneumonia and mold, the results from the third bone marrow aspiration continue to affirm that her marrow is still completely donor, no signs of rejection and no sign of cancer. By now you’ve learned with us to wait for the shoe to drop, yes? The bad news was that the process of hydration and antibiotics required a three week cycle to do its job and the team didn’t want her to leave town until it was over.

When Bill Levy, our Physician’s assistant, who now feels more like a friend and less like a member of a sterile medical team, told us about the delay, Janice began tearing up with frustration. I, being the calm and calculating peacemaker that I am, I wanted to jump across the room, grab Bill by the throat and scream: “What is it about the words, ‘I HAVE TO BE BACK IN NASHVILLE BY JUNE 29^th TO GET A TOUR ON THE ROAD!’ that you don’t understand?”

Oh yes, the month of June has been all about irrational, irritating and sometimes irresponsible feelings – Feelings of frustration because I fear that when I leave Janice, even for a day, her forward progress will stop, or she will get hurt (as if I were somehow some kind of miracle worker), thoughts that the medical team doesn’t really care about us, because if they did they would just let us go home (as if they can control her body getting pneumonia), or, and here’s the worse, feelings of anger toward my precious wife because she just won’t get better.

So I bring you back to my boarding the airplane, alone on June 29^th. I was not a happy camper. Once again I was alone, once again I was leaving Janice with a myriad of caretakers, all capable and good friends and family, but still different people every couple of days. The night before I left for Nashville, I must admit I had a major meltdown. Late in the afternoon, after working all day in the apartment trying to keep up with my business I realized that I was leaving the next day and had much to accomplish before I could stop for the evening. So first, I spent two hours typing and emailing a four page detailed schedule/instructions sheet for the 4-5 people who would once again help us get through the next two weeks. Once it was sent, I jumped into the car, picked up Janice at the clinic, ran to the grocery store to buy food for the next 10 days, came home, did four loads of laundry (yes I have become quite the domestic goddess) so I had clothes for the Nashville trip and so Janice wouldn’t have to walk around the apartment naked in front of her care-giving friends, packed my suitcase, cooked diner and then sat down to sort all the pills into tiny plastic boxes (four a day for 7 days). When all the tablets were in their proper space, I reached down to pop close the tops of 28 pill boxes (all connected mind you) and proceeded to flip an hour and a half worth of work, thousands of dollars of pills all over the floor of the apartment. This presented a couple of major problems, first, all the pills were compromised because they were now lying in our Berber carpet (which met they should have been discarded, since Janice’s immune system is compromised, but insurance wouldn’t have covered another round of these expensive medications, and there was also no time to refill the prescriptions), and second I now had to find 250+ pills spread across the floor, under the couch and coffee table and without the benefit of their labeled bottles, figure out which was which and restock the pill container.

At this point, after a few choice words from which I will spare you, I slumped over and begin to pound my head on the coffee table and repeat the mantra, “I can’t do this anymore, I can’t do this any more.” For about the tenth time in the past two years it was too much for way too long. After a brief spat of body tremors, I sat up, picked up the pills, wiped them off and restocked the pill box.

Well, Janice did great while I was in Nashville (maybe it was the carpet fuzz on the pills), and thanks to Susan, Dainette and Chelsea she took her medication, went to the clinic, got hitched up to her hydration, ate in restaurants, went to the mall to shop and even saw a movie. When I flew back to Seattle, my sweet niece Chelsea picked me up at the airport and returned me to my love who was in better shape then when I left.

So from this point, here is our schedule:

Today, I leave for Denver for a few brief days at the Christian Booksellers Convention (CBA for those of us in “the biz”).
I return to Seattle for a day of meetings with Janice’s medical team where they will wrap up their care of her, close the thick chart and prepare it for a move to Vanderbilt where Janice’s treatment will continue during the next eight to twelve months of continued recovery. I expect we will smile a lot, laugh and probably shed a tear with this incredible group of people who have cared so deeply for us over the past five months. After our meeting we will probably hug and they will send us on our way. Next, we will ship boxes of stuff we have accumulated in the apartment over the past 5 ½ months, stuff not meant for suitcases and…
On the Thursday the 14^th we (that’s Janice and I!) fly home to Nashville.
Our son Taylor comes in from Boston to see us the day we arrive and will stay with Janice while I go out to see the tour I have on the road.
On the 18^th or 19^th we will reacquaint ourselves with our old friends at Vanderbilt and continue the recovery process.

I started this note by having you on the plane to Nashville with me. I want to finish my story with that flight. In Nashville, I got off the plane, retrieved my suit case at baggage claim and step out into the 98 degree humid summer heat. Home once again, but still alone. I walked through the crowds of summer travelers feeling detached like the main character in Camus, The Stranger. I stood at the baggage claim level street curb waiting for Jen, our summer intern at Chaffee Management who had graciously offered to pick me up and take me home. As I waited, a spotless, white Escalade driven by a perky, attractive, mid-thirties woman pulled up. She hopped out, greeted her husband returned from some business trip I’m assuming, they climbed back in the car, kissed, and pulled away. As they passed me I noticed the two “perfect” children in their SUV carseats.

Now, I know emotions don’t have form, but I can tell you, the one called “overwhelm” came up behind me and buckled my knees for a brief second or two, I very nearly had to stagger to regain my senses. What would it be like, I thought, if life was just normal again? Why can’t my healthy wife pick me up at the airport, take me home to a warm house full of the people and food we love. Where are those evenings of, well, something normal. Where did those things go? There I stood, 4th of July weekend, a thousand miles away from my boys in Boston, and 2,000 miles away from Janice in Seattle. I was on my way home to work through the weekend, alone in my house. (I know it sounds like I am feeling sorry for myself, but bear with me this is going somewhere).

As quickly as the wave of despair washed over me I was hit with an epiphany. What is normal? Inside our perfect home, when everything seemed to be that (as I now idealistically remembered), there were problems and pressures. We had teen issues and job issues, financial issues and marriage issues. But in spite of all that, and regardless of our current situation we were, we are, still family. Janice, the boys and I, though separated, are a unit that can never be divided. I was struck with that reality. Reality, really, because of those past issues and struggles, we can now stand in strength, and fight the biggest battle in our families short history, Janice’s cancer.

In the same thought I was once again reminded that God did not give his son so our lives would be normal. Normal is not the point. Scripture says that in this life we will have trials and tribulations. Then, as if to affirm that truth, the following Sunday, sitting among our church family at St. B’s, the Lectionary reading had us saying this:

“Come to me, all you that are weary and are carrying heavy burdens, and I will give you rest. Take my yoke upon you, and learn from me; for I am gentle and humble in heart, and you will find rest for your souls. For my yoke is easy, and my burden is light.”

Matthew 11:30 NRSV

Jerry, our wonderful new rector reminded us that we are like oxen, carrying this heavy wooden yoke on our shoulders, trying to pull all the crap life has dealt us through the mud and down the rutted road in front of us. And strangely enough, Jesus, Savior of the world, doesn’t come up, take the yoke off our shoulders and disconnect us from our load. No, instead, he hikes up his robe, crawls in between us, throws his arms over the yoke and pulls with us, lightening our load, sharing our burden.

And that, my friend, is the message of the Gospel…

…suddenly, on June 29^th, standing at the curb of the Nashville airport, in the sweltering Nashville heat I was hit with a cooling revelation, I was not alone. Janice isn’t alone, our boys aren’t alone, and you are also not alone. We’re carrying a heavy load, but none of us carry it alone.

Blessings,

Jim

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