by Cronk, LN
Of course that meant dying. This also is not a whole lot of fun to think about (particularly when you find yourself feeling all alone and completely unable to pray).
After a long while though, I finally decided that if I had a brain tumor or something and there was a greater than fifty percent chance that I could beat it, I’d take the treatments and do whatever it took to fight. Otherwise, I was just going to enjoy what little time I had left. That, I decided, was my cutoff point – fifty percent.
My thoughts turned to Laci. I could tell by the sound of her breathing that she wasn’t asleep either. I closed my eyes and wondered how Laci would feel about my fifty percent decision.
Not good. I knew that she would want me to fight no matter how small my chances were.
But it was my life and if I didn’t want to spend the rest of it undergoing treatments that were going to make me feel terrible and not help anyway, well, she was going to have to accept that. I’d just have to put my foot down.
Suddenly Laci sat up in bed.
“What’s the matter?” I asked
“Nothing,” she said, swinging her legs over the side of the bed. “I have to go to the bathroom.”
The bathroom was down the hall and since we weren’t very familiar with Mike and Danica’s house, I sat up too and turned the light on for her. Laci got out of bed and went into the hall.
After she was gone I looked around the room. Something about having the light on made it easier to breathe – made me feel less panicky. I remembered how Amber had often wanted the light left on when she’d been scared at night. Somehow it had made her feel safer and now I knew exactly how she’d felt. I left the light on and lay back down.
After a few minutes, Laci returned and climbed back into bed. She lay down beside me on her back and I moved closer to her, putting my head on her shoulder and my arm over her. She wrapped an arm around me, too.
It was when she didn’t say anything – didn’t ask me to turn out the light (and didn’t even ask me why I was leaving it on) – that I realized she was just as scared as I was and that having the light on was making her feel better too.
Poor Laci. Had she had this horrible feeling of dread in the pit of her stomach for a month?
Dear God, I prayed, please be with Laci. Please help her through this . . . please give her peace and help her to not be scared.
Earlier when I’d tried to pray I had gotten nowhere, but now – now that I was praying for Laci instead of myself (or maybe it was because the light was on) – I could do it.
Wow.
The fear and dread that had been overwhelming only a few minutes earlier lifted. I gave Laci a little hug and she squeezed me back.
And I kept on praying.
At some point we both finally must have fallen asleep and in the morning the alarm woke us up before the sun rose. The bedroom light was still on, but it was getting hard to breathe again and the throbbing in my stomach had started back up.
I sat up in bed and covered my face with my hands – my elbows resting on my knees. Laci sat up next to me and began rubbing my back. I remembered how much better I had felt once I’d finally been able to pray last night. I took my hands off of my face and turned and looked at Laci.
“Do you want to pray?” I asked her and she nodded.
We got down on our knees and bowed our heads over the bed. I took Laci’s hand and started to pray for her again.
“Dear Heavenly Father, please be with Laci and give her the strength to handle whatever lies ahead of us. Please keep her close to You and let her know how much You love her–”
A cry escaped from Laci and she sank to the floor, sobbing into her hands. I sat down next to her and wrapped my arms around her.
“Shhhhh,” I soothed, holding her tightly with one arm and stroking her hair with the other. “Shhhhh.”
Please don’t let her feel like You’ve left her. Please let her know that You are here with her and will never leave her.
Laci started quieting down. She wiped her eyes and sat back.
“I’m sorry,” she sniffed.
“It’s okay,” I whispered, brushing tears off of her cheek.
Whatever happens today, please comfort her and see her through–
“You can keep praying,” Laci said.
“I never stopped,” I told her.
She leaned forward, resting her head against my shoulder while I continued.
“And I ask that You will hold her in Your arms, Lord and give her Your peace. Amen.”
Laci took a long, ragged breath and I could tell that she was feeling better too. She pressed her head tighter against me and she prayed.
She prayed for me just like I had prayed for her.
She didn’t pray out loud like she usually did . . . but I know that’s what she was doing.
I could feel it.
Once we got downstairs Laci couldn’t eat breakfast, but I managed to eat some of the sausage and hash browns that Danica had been nice enough to make for us.
“Are you sure you don’t want me to go with you?” Mike asked for the umpteenth time as I was draining the last of my orange juice.
“No,” I said. “We’re good.”
“Okay,” he nodded reluctantly.
In retrospect I should have let both Mike and Danica come along – it would have been better for Laci if I had. At that point, however, I didn’t even want Laci there with me. I really wanted to be alone when I found out what the doctor had to say. But that, of course, wasn’t even a remote possibility – Laci had barely let me out of her sight since we’d left Mexico City.
Dr. Keener again met us at the door to his office – unlocking it for us and giving us an evasive and small smile before leading us back into the same office that we’d first met him in the morning before. We sat down, Laci gripped my hand, and he began.
“I’ve assessed the results from all of testing that you’ve had done – both here and the tests that were done in Mexico. I found no evidence of anemia, depression, infection, diabetes, kidney or liver disease. There was no indication of any vitamin deficiencies, thyroid abnormalities or any problems with your heart or lungs. There were no biomarkers found in the cerebrospinal fluid that were definitive for diagnosis and your genetic mapping showed no inherited diseases that would account for what we’re seeing. There were also no signs of any brain tumors or any brain lesions – which is, of course, good. Blood flow to the brain doesn’t seem to be compromised in any way, so we can rule that out as part of the problem as well.”
No signs of any brain tumors.
I glanced at Laci, but didn’t see a look of relief on her face – probably because she knew there was a “however” coming up.
“However,” he said, “your MRI shows that the volume of gray matter in your brain is diminished . . . particularly that of your hippocampus, which is responsible for learning and memory. The fact that you’ve been exhibiting mild cognitive impairment that can’t be attributed to anything else, coupled with the results of the MRI indicate a diagnosis of early-onset Alzheimer’s disease.”
“Mild cognitive impairment . . .” I repeated, focusing on the beginning of his sentence instead of the end.
“Yes,” he nodded.
“All those tests I did yesterday?”
“Your cognitive memory tests,” he admitted, “were within normal limits.”
“I did good on the tests,” I clarified, “and you can’t find anything wrong with me . . .”
“Based upon the history you’ve provided,” he glanced at Laci and then back at me, “I feel it’s safe to say that we’re witnessing a deficiency in your mental abilities that can’t be attributed to anything else.”
“So just because she says there’s something wrong,” I jabbed my finger at Laci, “you’re diagnosing me with Alzheimer’s?”
“You also indicated some concerns that you were apparently doing things and then not remembering them later, correct?”
I didn’t answer.<
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“And,” he reminded me, “the volume of your gray matter is diminished beyond what would be considered normal.”
I still didn’t say anything.
“And,” he added, “the PET scan detected some metabolic abnormalities in your brain that would be consistent with what we would expect to find in a patient with Alzheimers.”
“But isn’t there some kind of test you can do to know for sure?” Laci asked.
“Unfortunately, no,” he answered, shaking his head. “The presence of certain markers can help confirm a diagnosis, but as I said, your husband doesn’t have any of those markers at this time.”
“At this time,” I repeated.
He nodded. “Alzheimer’s – particularly early-onset Alzheimer’s – often has a genetic component, but it doesn’t always. You have no genetic markers typical of Alzheimer’s. The biomarkers found in the cerebrospinal fluid can also be used for diagnosis, but the absence of these markers doesn’t mean that Alzheimer’s can be ruled out. It wouldn’t surprise me, however, to find the appearance of those markers six months or a year down the road.”
“Why did he do so good on the test he took yesterday though?” Laci asked. “Why does it come and go the way it does?”
“It’s likely that certain parts of your husband’s brain are compensating for the parts that are degenerating. It’s as if one part shuts down and you see the symptoms exhibiting themselves in his behavior or in his abilities. Then, the brain finds new connections and accesses other parts of his brain that aren’t damaged and his functions return to normal again. As those areas become affected, new connections to other undamaged areas have to be found and – until they are – you see the symptoms.”
“How long does it take for the brain to find new connections?” Laci asked.
“I’m oversimplifying things,” he said gently. “It’s a little more complicated than I’m making it out to be and no two cases are exactly alike, but overall, the amount of time it takes just depends on where the new connections need to go to and how many undamaged parts of the brain are left.”
“And eventually there won’t be any undamaged parts to connect to,” I stated.
Dr. Keener looked back at me. “Nothing can repair the damage to the brain tissue once it’s occurred,” he admitted, “but there are treatments that can drastically slow down the progression of the disease – keeping as much tissue as possible undamaged, for as long as possible.”
“What kind of treatments?” Laci asked, swallowing hard.
“In my opinion, the most effective treatment right now is a medication called Coceptiva. It’s only been on the market for about a year, but the initial results are very, very promising.” Then he added, “There are also some clinical trials that you may want to consider.”
“What are the side effects?” I asked.
“Of the clinical trials?”
“No,” I said. “Of that medicine . . . Coceptiva?”
“Minimal,” he said. “That’s one of the reasons I’m recommending it. Dry mouth and rash are the most commonly reported complaints. Sometimes liver function can be compromised, but your liver enzymes are all within completely normal limits right now so I would just recommend having blood work done every three months to make sure those levels stay where they should.”
“What about the clinical trials?” Laci asked.
“New drugs, combinations of drugs and treatments are being developed all the time,” he said. “All clinical trials are approved by the FDA, but that doesn’t mean that they’re necessarily safe, or that they’re effective. That’s the main purpose of the trial – to determine if they’re safe and if they’re effective.”
“Can I start taking this Coceptiva now and think about clinical trials later?”
“Certainly,” Dr. Keener nodded. “Many patients who choose to get involved in clinical trials do so after they’ve exhausted all other traditional treatments that are available.”
“I want to wait on that,” I told Laci. Then to Dr. Keener I said, “Thank you,” and I asked him to point us to the pharmacy.
The pharmacy was just across the street and as we walked to it, I felt strangely buoyed by Dr. Keener’s words.
No signs of any brain tumors. No signs of any brain tumors.
“Any chance I can talk you into going to that pancake house we passed on the way over here?” I asked Laci after we’d picked up the prescription.
“You’re hungry?”
I looked at Laci and thought about her question.
Ever since we’d left the doctor’s office, my mind had been racing to remember what I’d read over the past few weeks about the symptoms of Alzheimer’s.
Becoming confused in familiar places.
Dressing inappropriately for the weather.
Trouble handling money and paying bills.
Granted it got worse . . .
Continuously repeating stories.
Increased memory loss and confusion.
Lack of concern for hygiene and appearance.
And worse . . .
Inability to communicate.
Lack of control of bowel and bladder.
Inability to recognize oneself or family.
But this was better than finding out that I was going to be dead in three to six months from brain tumor, wasn’t it? And what had I read about the life expectancy of people diagnosed with Alzheimer’s? Five to twenty years from onset of symptoms? Something like that. Certainly not three to six months . . . five to twenty years.
Laci was looking at me, waiting for an answer.
“Yeah,” I nodded, giving her a little smile. “I’m hungry.”
When we got to the restaurant the hostess showed us to a booth and I let Laci sit down first, sliding in next to her. Our waitress showed up and took our drink orders and then we looked over our menus.
“I want you to eat something,” I told Laci. She nodded reluctantly and when the waitress returned she ordered some sort of fruit dish with oatmeal.
“Why would you come to a pancake house and order oatmeal when they’ve got all this other good stuff?” I asked her, sweeping my hand across the restaurant.
“I’m trying to eat healthy!” she argued.
“Do I still have to eat healthy?”
She looked at me for a moment as if she was trying to decide whether to cry or laugh.
“As if you’ve ever tried to eat healthy,” she finally muttered. I smiled at her.
I took a sip of water and then reached across her and into her purse, pulling out the little bag with my new drug in it. I opened the bottle and dumped one out onto my hand. I held it up for her to see.
“The results have been promising,” I reminded her, tipping the little blue pill back and forth. “Very, very promising.”
She swallowed hard, nodded, and then watched me wash it down with some more water. I started looking at the pamphlet that had come along with it.
“Most common side effects,” I read aloud, “include dry mouth, foul smelling urine, and a localized rash in the groin area?”
Laci almost smiled.
“I think he failed to mention that part,” I said wryly and then I went on. “Potential side-effects NOT so commonly reported include nausea, constipation, upset stomach, shortness of breath, jaundice, dizziness and/or fainting. Hallucinations have been reported in a small number of cases. Additionally, a small number of patients report experiencing thoughts of suicide. If you develop suicidal thoughts, contact your physician immediately. Contact your physician immediately if you notice an unusual increase in heart rate, develop an erratic heart rhythm, or if you notice yellowing of the skin and/or whites of the eyes, or experience sudden blindness.
“Seriously?” I asked her, hoping for a real smile. “They think they need to tell me that I should contact my doctor immediately if I experience sudden blindness?”
“Maybe we should talk to Mike before you take any more of those,” Laci said worriedly. “None of that so
unds too good to me.”
“Relax,” I said, “none of that stuff is going to happen – except for probably the groin rash . . .”
I finally got the smile that I’d been hoping for. I reached into her purse again, this time pulling out the bottle of pain reliever that she’d been carrying around ever since she’d broken her shoulder four years earlier.
“Ever looked at this?” I asked, unfolding the warning label that was taped to the bottle. I started reading. “Heartburn, stomach bleeding, ulcers, high blood pressure . . .”
“It really says all that?” she asked, looking at the label with me. I nodded.
I could tell that she was still worried about me taking this new medicine though . . . and worried about me in general.
“If it’ll make you feel better,” I assured her, leaning over her one last time and throwing both of the bottles back into her purse, “I’ll ask Mike what he thinks about it. If he feels at all like I shouldn’t be taking it, I’ll stop, okay?”
She nodded.
“And,” I added, “if I develop a groin rash, I promise I’ll stop too.”
When the waiter brought Laci her oatmeal and me my chocolate chip pancakes (with whipped cream and powdered sugar), we prayed again and then started eating.
“What are we going to tell people?” Laci asked after she’d taken about two bites of her oatmeal.
“Whatdaya mean?”
“I mean . . . I mean – are we going to tell people about this or are we going to keep it to ourselves or . . .”
“Oh,” I said, taking another slice at my pancakes with the side of my fork. “I don’t know. I haven’t really thought about it. What do you think?”
“Whatever you want to do.”
“Well, we have to tell Mike and Danica,” I said. “And Dorito . . .”
Laci nodded.
I thought for a moment.
“And I don’t think it would be very fair to put Dorito in a position of keeping it a secret from his brother and sisters,” I finally said, spearing some pancakes.
