Coming Together

Patience. Waiting. Relaxing and letting go. That was what I needed to do. I knew it, too.

This morning it all began to come together. As I lay in my bed at 3:30 after being awakened from a dream by the sound of cats fighting, I tossed my body to the right, fluffed my feather pillow into a ball under my head, and stared absently in the direction of my dresser. I was thinking of the frustration I had felt every minute of every day since leaving the hospital. Well, really it was before that. The words that had lingered in my brain since the day my sister said it aloud it with a touch of consternation – and who could blame her?: “You are the most impatient person I have ever known!”

Patience. Waiting. Relaxing and letting go. That was what I needed to do. I knew it, too.

One might have thought, as I did, that the stay in the hospital was the hard part. It wasn’t any fun, I’ll give you that, but compared to coming home and restarting my life, it was a piece of cake. Funny. That’s what Dr. Joudeh called the autologous stem cell transplant that I underwent when compared to the autogenic version, which requires stem cells from a donor as opposed to using one’s own. He was curious what my experience was like, how I felt about the care I received at OU Medical and the Stephenson Cancer Center. Of course, I had nothing but good things to say about the hospital and the dedicated medical professionals who took care of me. When you consider that the expectation was a minimum three week stay, and that my engraftment began on Day 4 after transplant as opposed to the usual Day 6-11, and that by Day 10 my absolute neutrophil count began to more than double each day so that 16 days after I was admitted, I was deemed ready for discharge, it’s easy to see why I felt impatient about my recovery. Boy, did I have a wake-up call coming.

If you asked me what the worst part has been so far, I would tell you without hesitation that it’s the physical weakness. In the hospital, the nurses, PA’s, and doctors harped about the importance of exercising every day, even if it was just a short walk around the hallway, and until the last week that I was there, that wasn’t a problem for me. But once my marrow had been wiped out by the high-dose chemo, and the new marrow started to grow, it was a struggle just to get from my bed to the bathroom. Taking a shower, which I did every day but once while I was there, became my crowning achievement. By the time I finished and collapsed back on my hospital bed, I felt spent, as though I had struggled to reach Camp 4 on Mount Everest.

Second to the weakness is food and eating.

“Try to eat something every day,” PA Regina would encourage me. “If you can’t find anything that tastes good, drink a Boost. You’ve got to eat to regain your strength.”

Except for occasional overindulgence, I have never in my life had a problem with food – until now. So far the only foods that taste close to normal are bean nachos from Mariachi’s, my favorite Mexican restaurant in Gulf Breeze; chicken egg rolls and orange chicken; and cheddar cheese. When I met with Dr. Joudeh for the first time in more than two months earlier this week, he encouraged me to eat nutritious foods.

“We are not trying to fill you with calories to gain weight, but rather, you should eat fruits and vegetables and beans.”

Beans! Yes! I flashed a look at John and mouthed the words, “See? Bean nachos!”

Okay, I realize that particular version of pinto beans is probably not the most nutritious, but over the two weeks now that I’ve been home, they are what I have enjoyed eating more than anything else, as strange as that sounds. I have a one-pound bag of pinto bins ready to soak tonight and cook tomorrow with a big ham hock. I don’t know how they’ll taste, but if I have the energy, I’m going to try to fry some potatoes and bake some cornbread too. And if I can’t muster the energy, I’ll ask John and the boys to cook them for me.

I think I like the latter scenario better.

Want to hear some of the stranger things I have experienced? The first time I stood at my kitchen sink and turned on the water, I could smell the chlorine in it. My car smells funny too, and not in a good way. When I was staying with my sister after being discharged from the hospital, she cooked one of my favorite meals, chicken spaghetti. The chicken tasted good; but the spaghetti noodles tasted off. Like most of the foods that taste strange, there was a chemical or metal aspect to the flavor that was very distasteful. Even coffee doesn’t taste right, and until this morning, I haven’t had any since the first couple of days when I got home. I can taste watermelon, but apples, at least the red delicious variety, have little flavor at all. If I were blindfolded, I would only know I was eating an apple because of the texture. It’s the same with carrots, although there is a faint familiar flavor to them. Bananas were okay, at first, but now they hold no appeal for me. Chicken and fish seem to be fairly normal tasting, but I have absolutely no appetite for beef, none whatsoever.

On a somewhat positive note, one of the strange things that I have noticed is that my fingernails have never been so strong and have never grown so long as they are right now. I say that is “somewhat positive” because it makes it difficult to type and to remove contacts. You may be thinking, why don’t you cut them short, Kelly? I suppose I could, but their uniform growth and hardness are such a novelty for me, I can’t bring myself to cut them or file them down, at least not yet. On a related note, I read up on fingernails and learned that they are made of keratin, the key protein that makes up not only our fingernails, but our hair. Now that’s something to get excited about! If my hair grows back anywhere nearly as fast and strong as my fingernails, I’ll be more myself in no time!

During my last visit with Dr. Selby at the Stephenson Cancer Center clinic on 23 June, he told me that the high-dose chemo had “destroyed my taste buds,” and that it would take some time for them to grow back. For some reason, this mildly surprised me. How had I missed that in my research over the months before the transplant? I knew to expect that foods would taste different, but it didn’t occur to me that my taste buds had been obliterated. I suppose it makes perfect sense. I began to wonder if some of the foods I used to enjoy would ever be appealing to me again. So far, there were so few things that I ate that actually tasted good. I found myself sitting alone in my living room, covered with a fleece throw, the blinds drawn to keep out the sun, and even the warmth and coziness of a cat sleeping peacefully on my lap brought me little comfort. My stomach has been upset most of the time, but the medicine I have to combat it causes another equally unpleasant side effect: constipation with the bloating and painful gas, many times during the night so that it is nearly impossible to sleep. In addition to having no desire to eat, I felt no motivation to write either, although once or twice I did sit down at my computer. Both times I stayed only long enough to pay a few bills and read a few emails, but I had little strength for anything else. Keifer waited on me hand and foot. John would sit with me and ask me, “Do you feel like taking a walk to the water?” or “How about we go for a drive somewhere?” But I would just glance at him forlornly, shake my head gently, and look away.

There have been a few good days, when I awoke in the morning feeling almost normal. On those occasions, I took advantage of the feeling to get out of the house, and on both occasions, probably overdid it because the days that followed found me once again curled up under a blanket, shifting positions every few hours when a flat spot would form on my butt or my hip like the field spot on a pumpkin. I haven’t really worried about things like pneumonia or blood clots. I have to climb a flight of stairs to my bedroom several times every day, and it’s easier today than it was two weeks ago when I got home. Still, I know I should be careful because my fledgling immune system doesn’t need a full-blown infection right now.

So, how has it started to come together for me? As I lay awake in my bed this morning, feeling frustrated because I couldn’t get back to sleep, I decided to talk to God. I remember telling a friend in an email not long ago that one of the most relaxing things for me when I have trouble sleeping is saying a prayer, but that I often fall asleep in the middle of it, and I feel a little guilty about that, but I know He understands. Before I addressed Him, I tried to gather my thoughts. I thought about how blessed I have been throughout this experience, and especially those two weeks and two days that I was in the hospital when so many friends sent me cards and gifts, called or texted, or just thought about me. I thought about my sister and how she and her husband had provided a cozy room for me, fed me, and even hosted a small gathering of family and friends for me before I headed back home to Florida. I thought about my sons and how they love me and care for me. I thought about how filled with self-pity I had been because I felt half dead. My hair was gone and everyone could see the funny flat spot on the crown of my head and the ugly skin tags that my hair had always hidden. I couldn’t gather the willpower to eat, and even when I did, nothing tasted right. I didn’t have the strength to drive my car, to take a walk, or to write. In my mind, I knew all of it was temporary, but I wanted it to be over. Now. I needed to talk to God about being patient, about waiting on Him, and giving it all to Him because it was too much for me to carry. I shouldn’t even be trying, I told myself.

As I lay there in the darkness, my eyes went to the dark rectangle that hung on my bedroom wall next to the door. It was a wood carving that I had purchased some 40 years before on one of my family’s many trips to the Rocky Mountains. The wood was red, and the carving on its face included a majestic eagle in flight with the wood resembling red cliffs behind him. The words of Isaiah 40:31 were carved under the eagle and painted white: “They that wait upon the Lord shall renew their strength…”

Isn’t that exactly what I needed? To have my strength renewed?

“They shall mount up with wings as eagles…they shall run and not be weary…and they shall walk and not faint.”

The answer had been in my heart and in my head all along. Now, if I could just put it to practice, have the patience to let go and let God handle it. All in His good time.