STORMS

(circa 2004-2006)

…and our saga continues…

Bill’s cancer was miraculously gone! We were beyond grateful. God had truly worked a miracle, but there was so much more to deal with.

For the next several weeks after Bill’s two cancer surgeries, he remained in the hospital, suffering from a mysterious kind of infection which required him to be in isolation. Whenever someone would come to visit, they would have to don a gown, gloves and mask. Besides that, he was not allowed to eat or drink anything – not even ice chips. So they installed a “J tube” (a tube inserted into his intestines) and was fed with a liquid diet. His heart was in atrial flutter so they did a cardio-vert (shocking his heart to get it back into rhythm) and his biliary duct had closed up again so they performed another “ERCP” (a scope inserted from his throat way down into his bile duct) to install another stent. His liver and kidneys were also showing ominous signs of problems.

Diabetes began to be a problem during this time so he had to begin taking insulin injections. And ascites (fluid on his abdomen) really began to be a problem too. Several times they had to perform procedures to drain off the fluid, sometimes draining 4 to 5 liters of fluid at a time.

Day after day, week after week, he lay in the hospital bed. He hardly talked or reacted to anything – he just lay there and stared, with no expression on his face. It was frightening. Visits by our friends and family were a godsend, providing welcome breaks in the interminable, bleak monotony.

“Happy Birthday”

December 20^th was his 60^th birthday and he was finally released from the hospital! What a wonderful birthday present. After nearly 5 weeks he was HOME!

But it was Bill’s 60^th birthday and I was in a dilemma. He couldn’t eat. There could be no cake. I mean, it’s really hard to celebrate a birthday with no cake. But then I had an idea: he was being fed a liquid diet. His “food” was in 8 ounce cans, the contents of which would be poured into a pump, which went through a tube into his intestines. What if I made a “cake” out of those cans?

So I took about 8 cans and placed them in a circle on a plate. Then I took 6 cans and placed them on top of the 8 cans. Then I took 4 cans and placed them on top of the 6 cans and, voila! A 3-tiered birthday “cake”. After gluing birthday candles onto the cans, his birthday cake was complete. (I know – it’s weird, but hey, you gotta do what you gotta do, right?) We sang “Happy Birthday” to him and he mustered up just enough breath to blow them out, then collapsed back into his recliner. And he “ate” his birthday cake through his tube. Problem solved! I’m not sure if Bill thought it was funny, but I thought it was hilarious – and very creative, if I do say so myself. (Spoiler alert: we didn’t partake of any “cake”.)

Home Again

Having Bill home was, on one hand, a relief. On the other hand, my role drastically changed from hospital visitor to caregiver. His care was totally up to me now and for the next two months he had to spend about 16 hours a day hooked up to his feeding tube and pump. I had to fill his pump several times a day, clear out the feeding tube when it clogged up, crush his pills and administer them through his tube, etc., etc.

Finally the doctors determined that he could eat and drink again. When we went to the grocery store together he was like a kid in a candy factory, buying all kinds of food and relishing every bite.

For the next six months Bill was in and out of doctor visits and hospital procedures, which consisted of CT scans, draining more fluid from his abdomen and having surgery to repair a huge inguinal hernia. None of the doctors could tell us why he kept having these problems. They were out of expertise. It was then that we decided he needed to go to Mayo Clinic in Phoenix.

And that’s what we did. On our first visit to Mayo we brought two years’ worth of medical records (over 700 pages) and 40 CT scans to give to Bill’s new doctor. After nearly fainting, the doctor realized she had a lot of work to do. Eventually she ordered a battery of tests for him and referred him to over 14 specialists. And after several months Mayo finally had a handle on how to care for Bill. We knew we were in very good hands.

HOWEVER, every time Bill had doctor appointments or procedures we had to travel over 150 miles each way. Often we had to stay overnight in Phoenix. Thankfully, Shannon & Gabe had moved to Phoenix and always welcomed us with open arms, saving us a boatload of money on hotel rooms. Juggling our trips to Phoenix with my demanding job was a real challenge, but my co-workers at the church were so supportive and covered for me countless times. I will forever be grateful for each one of them.

Those days flew by in a flurry of activity, stress, confusion and, yes, stomach-churning anxiety. Day after day, month after month – the memory is all a jumbled, hazy blur.

A Wild Ride

But, in September of 2006 things seemed to have calmed down. Bill seemed to be doing better. And so we decided we could break away from the craziness that had been our life for so long and go on a much-needed trip to see my mother and step-father in beautiful Florence, Oregon.

What a treat to be on another much-loved road trip again! Our visit with Mom & Mel was delightful. We spent leisurely days with lovely drives up the Oregon coast, going berry-picking and eating yummy berry cobbler. However, Bill began to feel lousy again, with the all-too-familiar, ominous symptoms of his bile duct getting clogged up – yet again. His itching was coming back and his skin was turning yellow again.

And so, at 4pm one afternoon we went to Emergency at the tiny hospital in Florence and finally got in to see the doctor at 11pm. The doctor called Mayo Clinic to get more information about Bill’s condition and they told us to go straight to Eugene Oregon, get on a plane and fly home – NOW!! However, there was no way we could afford a plane trip. Besides, our car and our dog were in Florence and we would have to come back to get them. No, we would have to drive the 1,250 miles as fast as we could.

We got back to Mom & Mel’s at 1:30 am and, after 3 hours of sleep, packed up our car and headed home. We knew it would be a grueling drive but were determined to do it. However, after driving only 100 miles we stopped at a rest area. When we got back in the car, it wouldn’t start. We had to call a tow truck and as we waited, I cried out to God in frustration: “God, is this some cruel trick? What are you doing? We don’t have time for this. Bill is getting itchier and itchier!” But at last, the tow truck came. What a welcome sight!

However, we still had to wait – in the mechanic’s shop. Thankfully it was a quick, inexpensive fix and we were back on the road. But after driving only 150 more miles it was late at night and we had to get some sleep. After just a few hours of fitful sleep in a motel we hit the road again. We had over 1,000 miles to go that day and most of that driving had to be done by me. We stopped only for gas and bathrooms, ate in the car and drove as fast as we could.

The day wore on and Bill was getting itchier and itchier, yellower and yellower and weaker and weaker.

By 10:30 that night as we neared Kingman, Arizona a horrendous monsoon thunderstorm hit. I was driving through a 75 mph headwind. Tumbleweeds were blowing straight onto our car. A downpour of rain hit the windshield with hurricane force. Lightning bolts split the sky in two and roaring thunder shook the very earth we were driving on. Suddenly the windshield wiper on the driver’s side disintegrated and I couldn’t see the road. So, I had to roll down the window, stick my head outside in the maelstrom and continue driving.

The off-ramp to Kingman was a gift from God and the Flying J gas station, a welcome haven – and it just happened to have the right size windshield wiper for sale. Bill mustered up the strength to change the wiper blade and we were on our way again.

Then I began to laugh – and laugh – and laugh. Maybe it was exhaustion; maybe it was hysteria; maybe it was God’s gift to give me the strength to continue. But I looked over at Bill and declared, “Life with you is certainly exciting. There is never a dull moment!” And we continued on our way – and he drifted off, back to blissful sleep.

However, I had to drive down what is considered the most dangerous highway in Arizona: Highway 93. Thankfully there were very few cars on the road at midnight, but the storm never abated. The flashes of lightning intensified and with each flash, my throat went dry and with each roll of thunder, my heart lurched. It was a “white-knuckle ride” for sure.

And finally, the bright red Mayo Clinic “Emergency” sign shone into my sleep-deprived, red-rimmed, blood-shot eyes and I breathed a heart-felt prayer of thanksgiving. We made it! We’re safe!

God never promised that our life would be easy, but he did promise to be with us every step of the way, every moment of our life. And he was – even when I got mad at him – even when I lashed out in anger – even when my faith waned and fear seized my heart. God never left me.

And you know what? Days after our wild ride I found out something so profound, so encouraging, so reassuring. Right at 10:30 that night, as the windshield wiper was disintegrating, unbeknownst to each other, God woke two of our friends up out of a sound sleep and told them to pray for us. They had no idea what was happening to us. They didn’t know that Bill was so sick. They didn’t know we were racing to the hospital. They didn’t know there was a raging storm battering us. But they faithfully prayed. And we arrived, safe and sound.

Epilogue: After examining Bill in Emergency at Mayo that night they determined that, even though Bill’s bilirubin count was very elevated (normal is 1.4 – his was 14!) he didn’t have any life-threatening problem. They couldn’t do anything for him until the next week. So, in despair, we drove to Shannon & Gabe’s at 4:00 am and fell into bed. He did eventually have his procedure, but his itching didn’t subside for another four weeks – and the nightmare of three years before repeated itself.