Thursday, May 30, 2013

Life as a Leukemia Surivor

I am a leukemia survivor. People tell me that I am an unusual one.

This post is written specifically because I'm worried that yesterday's was boring, even though I felt like it was essential to write those things for the sake of other survivors who might need to see how others did.

Today's ... well, it won't be.

I was given permission by Vanderbilt Medical Center to move away from the area in early May, 2012; just over a year ago.

Here was the story at that point:
May 1: "When [the EMT] lifted the bandage, there was a small explosion of blood that splattered all over the bed, my shirt, and even on him. The blood then began running off my chest and pooling in the crook of my arm."

The bandage that squirted when peeled.

May 10: We moved back to Selmer from Nashville.

May 30: "I only got about three steps down the line before my conscious mind caught up and realized that I had no idea where my feet were in relation to my body. All I knew is that my legs were somewhere behind me, too far back to have any hope of staying upright.

"I imagine it probably scared everyone to have the leukemia patient take a dive down the first base line, but we were playing in a grass field. It was soft, I rolled, and it didn't hurt at all."

This is how I had to dress for softball, too

June 13: I was still losing weight. I was 130 pounds, down from 190 before the transplant, and the chemo lines on my fingernails were growing out:

The scrawny dude
chemo-lines; one grown to the end, the other halfway
Being scrawny gave me some good stretching abilities!

Life as a Workaholic Leukemia Survivor

That sorts of sets the stage for where I was one month after returning to my home in Selmer.

In that condition, I returned to work. I run my own business, so I was able to set my own hours. I had to stay home and rest about one day per week, and hemorrhoids would be an ongoing problem throughout the summer.

So what would you do?

I rented a building in Selmer and tried to start a coffee shop.

Understand the scenario. Our church owns the building in Selmer, and they tried to do a coffee shop in 2011. It was almost successful. I really believed the problem was that we had a terrible sign, and there was no way to really tell what the building was being used for. Also, we had no advertising budget, so there was no advertising, either. Just word of mouth.

So I rented the building and tried to do it right. I advertised in the paper. I put a good sign on the front of the building, and I tried to run it with my daughter and a friend.

Front of the Selmer Buzz

Run it? I was already working, and I was taking naps at work on my office floor to do so. I was trying to catch up from 10 months of being in Nashville away from the office. The worst part was trying to catch up from the four weeks I didn't even eat, much less look at emails and texts.

I don't just have a warehouse business I was running, but I maintain four web sites besides this blog.

Why was I starting a business?

It seemed right. The building was sitting empty, costing my church money. I really thought I could make it work, and I was looking forward to using the building for seminars and other educational events that would benefit the community.

People suggested that maybe I was overdoing it. I acknowledged they might be right, then went on about my business.

The Day

Then came "The day."

I don't remember what day it was. I think it was in August.

We were open in the afternoon, but my daughter was unavailable to work for some reason. I tried to get hold of the friend who was helping me, but I couldn't reach her, either. Finally, I got my secretary from work, and I went down to The Selmer Buzz, as I was calling the new coffee shop.

Our advertising and sign hadn't worked at all. Business was incredibly slow, and we certainly weren't making any money. We did have one very successful seminar on health care reform, but otherwise, pretty dead.

It was not a good day for me. Back then I called those "fatigue days." Usually, I just stayed in bed all day. I'd been told not to fight those days. They always win. Today, however, I couldn't do that. I had to open the coffee shop.

I remember the time frame now. It was late October, early November, 2012. I had jogged for 3 or 4 minutes one day a couple weeks earlier, an extremely long run for me at the time. The next day I had run, then walked, 20 or 30 yards each, for a mile. That was really tiring. The day after that I went on a 4-mile walk with my family at a local park, much of it on hills. I was hobbling by the end, as was my daughter, who had injured her knee.

Exercise is supposed to help prevent blood clots, but I suppose overdoing it can make them happen. I got a blood clot in my calf so bad that I couldn't stand for longer than 5 minutes at a time. The pain in my calf would build and build as I stood, then begin to relieve if I could sit down and get my leg elevated. I brought a wheelchair to the coffee shop so I could get around with my leg up.

In that situation, on a fatigue day, I went to the coffee shop with my secretary from the warehouse so she could help me run it. I showed her how to the run the espresso machines and the "cash register," which was really a program on the Selmer Buzz' iPad.

Then, exhausted, i went to take a nap in the back seat of my car. I covered myself with a sleeping bag, and then realized that my toe hurt too much for me to sleep.

I have always been prone to ingrown toenails, but rarely have they been bad. I had chemo lines on them now, though, and the toenail was brittle. It had broken, and when I looked at my toe, I realized how bad the ingrown toenail was.

I don't remember which of these chemo lines gave me the problem.

Sighing and longing for sleep, I got out my toenail kit, which I carried with me at all times due to my finger and toenails constantly breaking or crumbling. It was agonizing, but I got my toenail as cleaned up as possible, and I got some Neosporin on the bleeding side of the nail.

My toe was throbbing, and it was trembling like a hurt puppy. I figured the pain would wear off pretty quickly, so I laid back under the sleeping bag, leaving my foot bare. I took a deep breath, and ...

Tap, tap, tap.

I looked up at the window where my secretary was tapping. I unlocked the door, and she opened it.

"There are four customers in there, and the espresso machine blew apart. I don't know how to work the other one."

My heart sunk. I was so tired. I couldn't imagine getting up. My toe was throbbing, and my foot was cold.

"I don't know if I can make it," I told her.

She went back in.

I pulled myself up, then I pulled my sock over my still trembling toe. I loosened the laces on my shoe, and I pulled it on my foot. Then I hobbled into the coffee shop through the back door. My calf started to throb as I got inside. My toe was already throbbing.

I smiled and greeted the guests, and I went to our new espresso machine. We weren't using it because my daughter didn't like it. I knew how to use it, but I'd only used it a couple times. Being distracted by pain and trying to take care of the customers, I quickly reached down and pulled the cap I would have pulled on the other machine.

Steam blasted across my hand. The pain was instant.

I jerked my hand back, looked at my secretary, smiled, and said, "Oops."

Amazingly, between me and her, we got the lattes out in a couple minutes. I had been standing the whole time. Pain was shooting through my calf and making its way up into my hamstrings. I looked at my secretary and said, "I'm going to bed now. I hope we have no more customers."

I grabbed a soda can on the way to the car so I'd have something cold to relieve the pain in my burnt hand. I hobbled quickly to the car, needing to get my leg in the air to stop the pain in my calf.

In the car, with the cold soda can pulled under the blanket with me, I uttered one prayer before I went to sleep. It was pitiful. "God, please stop hurting me." That's the last thing I remember.

The next day I closed the coffee shop.

December, 2012

 Obviously, I'd learned my lesson. I needed to rest. I'm a former leukemia patient, but still a recovering one.

The blood clot cleared up and stopped causing me pain in November. So in December I drove with my four youngest children to California for a vacation. My oldest son lives in southern California, in Riverside, and my brother lives in Sacramento, as do some "missionaries" from our church.

My oldest daughter, just turned 17, was diagnosed with the flu right before we left. She threw up regularly throughout the first two days of the trip.

Funny, though, despite my depressed immune system, I didn't get sick. Neither did anyone else in the family.

The weather had been in the 40's and 50's and drizzling for at least 2 or 3 weeks before we left. We were looking forward to the drive across the deserts out west.

When we got to southern California, the weather was in the 40's and 50's and drizzling.

I was cold all the time. I liked nothing better than curling up under blankets with a ski cap on, breathing down into the blankets to keep them warm.

My skin was also incredibly dry. It flaked everywhere. I was constantly having to brush it off my clothes. It was like I had dandruff everywhere, especially my face. To combat it, I applied a strong moisturizing lotion over most of my body twice a day. It was cold to put it on, and the moist layer on my skin just made me colder than I already was. It was also horribly time-consuming, as I also had to apply steroid cream to my skin twice a day.

I froze every time I had to apply the lotion or cream. Then I would be cold afterward, and I was cold all the time anyway. I missed a few applications of the steroid cream because I couldn't bear it, and I returned to Tennessee, driving, with a GVH rash over most of my body.

February, 2013

I tried to rest through January, but at the end of the month my son called from California.

"Hey, mom and dad, I'm getting married."

"That's fantastic, son! When?"

"February 10."

My wife said "Great!"; I said, "Isn't that in 11 days?"

It was. Amazingly, we found one very well-priced flight for February 8. Back out to California we went.

This kind of "rest" turned out to be very effective. I had a big increase in energy about that time. No kidding!

March, 2013

March brought spring break. We planned a vacation with the kids to Gulfport, MS. We would take them to the beach.

Then a friend called. He was coming down from New England. Could we meet him in Virginia Beach, Va on the 15th?

Sure, we'll just drive, uh, 14 hours, then come back, pick up the kids and go to Gulfport a few days later.

The trip to Virginia Beach was spectacular. We stopped along the way to visit another friend we know in Virginia, but we made a wrong turn and ended up on a narrow dirt road, climbing a mountain with a drop on both sides. My wife was driving at the time, and we were both terrified. When we got up the mountain, I got out of the car to ask someone for directions, and I was bitten by a dog.

By the time we got to Virginia Beach we had been on the road closer to 24 hours.

When we left Virginia Beach, we chose a highway through Norfolk. We hit Norfolk at rush hour due to poor planning. But it was not just rush hour. There was also construction on the east and south exits out of the city. Traffic was literally at a standstill. We gave up, parked, and went to a mall. This time it was my wife's turn to sleep in the car. She was too tired to shop or drink coffee.

Once we made it back, much slower than had been planned, we got ready for our vacation to Gulfport.

But wait! A pianist with whom my wife is familiar was coming through our town, and he could do a concert if we could arrange it! The only available day was the Wednesday of the week of spring break.

We made a change of plans. Only two nights down in Gulfport, then race back for the concert, then off to the space museum in Huntsville, Alabama, which is only 3 hours away.

Great plan, except our car broke down in Gulfport. We took it to a mechanic, but he couldn't fix it. It's a Lincoln. It's an older Lincoln that I got for $2250, but it's losing functionality because all the parts I need to repair it cost more than the car is worth. (Okay, that's a slight exaggeration.)

Off to the dealer it went. Off to the dealer in Gulfport, MS, that is, and since the first mechanic had the car for a day, we no longer had time to pick it up. We had to go back to Tennessee for the concert. We rented a car and headed home.

The return of the car at the end of the week, after the space museum in Huntsville, went without incident. The trip was not 3 hours, since we had to drive to Gulfport from Huntsville, a good 6-hour drive, then an 8-hour drive back to Selmer, but our Lincoln was fixed. The dealer had even fixed it inexpensively. Amazing.

April, 2013

April saw us flying out to California again!

There was a Bone Marrow Transplant Information Conference in Costa Mesa. Two days of doctors, seminars, questions and answers with BMT specialists, and meeting fellow blood cancer survivors. I really wanted to go.

Just for fun, we threw in another trip to Sacramento by car. Another 8-hour drive. We rented a tiny car that got 40 miles per gallon, and we gallivanted around California for a week. We even drove the Pacific Coast Highway coming back from Sacramento. We took pictures and exhausted ourselves, then arrived at our hotel the night before the flight at 11:30 pm. Fortunately, we had a non-stop flight that didn't leave until early afternoon.

May, 2013

We flew out of California on April 30. On May 2, two days later, I spent the entire day in Memphis at a writers guild and meeting friends. The next day, we spent the entire day in Nashville for doctors' appointments. That was Friday, and another week was gone without an appearance at my warehouse.

The following week was a blur of catching up.

Did I mention that we are outgrowing our warehouse? So we are not just performing business as usual. I am also going out with my warehouse supervisors to look at larger buildings.

A Typical Day

On a typical day I get up between 6 and 8 a.m. It takes over an hour to get ready for the day. I have several prophylactic treatments I do every morning, including checking my big toenails for fragmentation and cleaning them with alcohol. I have to steroid cream my entire body every morning, too. Sometimes there are other things I have to do, depending on the condition of my stomach. Breakfast is not optional, but mandatory so that I can take my morning meds without throwing up.

Usually the morning is filled with internet stuff—answering emails, writing blogs, marketing online, working on a book—which I often do from home. I leave for work before lunch. Often I have to stop on the way for refills on medication, either from the pharmacy or from the grocery store.

I get to the warehouse between 10 and noon, depending on the errands I needed to run and how long I was writing. If it's before noon, I check my to do list, then check on the people. One of my main jobs there is to make sure it's a positive work environment. I take lunch with the warehouse workers, and if I'm lucky they'll have room for me to play soccer with them the last few minutes of lunch.

After lunch I face the torrent of things that come my way. If there's problems at the warehouse I handle them. Accountants, meetings with supervisors, website and book planning with my daugter-in-law, church meetings, salesmen. There are never enough hours in the day, and it's always a temptation to hang around the office late—a temptation I'm careful to rarely let myself fulfill.

Most of the projects that pile up and demand my time are web site and writing projects. I have four main web sites and two blogs, including this one. Between them they got over 2000 unique visitors per day and over 4000 visits per day in April. Since that's 1.5 million visits in a year, the writing seems worth it. I always wanted to be a writer, but I could hardly imagine well over a half million unique readers of the things I write.

My web sites, by the way, are:

I only write the first and third of those. My daughter and daughter-in-law have written most of the Revolutionary War site, and my daughter-in-law, Esther Pavao, has a booklet called Slavery During the Revolutionary War that is available on Kindle!

My son and some college friends write the pages on the soccer web site. The fullest section of the site is its famous players section.

1 comment:

  1. Dearest Shammah
    I do enjoy your writings.
    I don't like all the things that causes you alot of pain. I feel for you. I rejoice of progress and overcoming times with you. Praying always. Thankful for God's Grace