Ophthal, Opthal, Optal, Octal…Eye Doctor

I’m starting to feel a lot better about my eyesight. Maybe it’s because I’ve had some time to process the realities that some of the damage done may be permanent. Or maybe it’s because I have hope that they’ll return to normal one day. Either way, I’ve accepted that the way I see now may be my new perfect.

The appointment with the glaucoma specialist went well. Let me define well: I don’t show any signs of glaucoma, the inflammation of my optic nerve head is absent, and after a week off of medication to reduce my eye pressure, the pressure levels are 12 and 11, both normal. It sort of confirms the theory that the trial drug induced my vision problems. Continue reading “Ophthal, Opthal, Optal, Octal…Eye Doctor”

Week 5: A Marathon of the Mind

Things are starting to become mentally tough. I feel like I’m on mile 20 of 26.2 mile marathon. My legs are getting tired and my mind is starting to wonder. I realize that I can’t turn around. Although, why would I want to? I’m almost to the finish line. This is the battlefield of hope, optimism, and endurance. The body is tired and the mind is vulnerable. A reliance upon feelings will always deceive. A reliance upon God’s promise for renewed strength (Isaiah 40:31) will always persevere.

This stretch would be easier if I didn’t have to add eye doctors to my list of appointments, but I’m hopeful to start the process of restoring my vision on Wednesday morning, when I’m scheduled for an exam with a glaucoma specialist not named Snoop Dogg. Although it’s still believed that the drug trial medicine induced my eye problems, the signs and symptoms appeared as acute angle glaucoma. The ophthalmologist at MD Anderson, by her own admission, stated that she was not a glaucoma specialist and that I might want to see someone who is. My hope is that something is able to be done to restore the perfect eyesight that I had only a couple of weeks ago. Continue reading “Week 5: A Marathon of the Mind”

To See or Not To See

Be thankful for what you have. Tomorrow may bring a different result.

“Your field vision test hasn’t shown any improvement. There’s a possibility that the vision impairment is permanent. Your eye pressure was extremely high for days before you came in, and there’s no telling how long it was symptomatic before you even noticed. We can give you another week to strategize a plan for work, but I don’t think an extra week is going to help at all.”

I sat in the chair, not knowing what to say. Dr. Esmaeli, the ophthalmologist, stood up and walked over to my where I was sitting. “I’m sorry, I have a tendency to be very blunt. I just feel that it’s better to be upfront with you.” I tried to communicate that my silence wasn’t due to her style of delivering the message, but she kept talking, “There’s always the possibility that months from now, this will clear up, but things haven’t improved much, which is a significant sign that they may not improve at all.”

It’s thought that my vision impairment was induced by the drug trial. By the time I was diagnosed with inflammation of the optic nerve head, my eye pressure was over 50. To compare, normal is below 20 and anything above 30 is considered an emergency. There’s no telling how long it was at emergency levels, but it’s highly likely that it had been days. I had confused the severity of the eye pain with a migraine a few days prior to my initial appointment.

“There’s no way,” I thought, “there’s no way that this can be permanent.” Katie asked the doctor’s for a minute, but I just wanted to get the rest of the examination over with so that I could get out of there. I didn’t want to be in that office anymore. There were too many people, and I just needed a little time to process what I had just heard.

My vision isn’t horrible. I can read words, but that’s only because one eye has almost returned to normal. The other doesn’t bring much clarity at all unless I’m looking straight ahead. It sees as if I had just woken from a two hour night’s sleep. Everything appears a little softened, like I’m watching a tv from the 80’s. My ability to see much when it’s dark has also been hampered. Having never failed a color blind test, I can now only get three out of twelve slides correct. It’s a significant drop from the perfect vision that I’ve had my entire life.

“There’s nothing we can do? I mean, is there any kind of corrective lens that might help me out?” I asked. “No, I’m afraid that there is nothing available to correct this,” Dr. Esmaeli responded. I was grasping at anything. Even the thought of wearing glasses would have eased my mind. I stared at the floor. For a moment, I was defeated. Like Rocky, standing in his corner during the middle rounds of a fight with Apollo Creed, I looked to God, my trainer, and thought, “Cut me, Mick. Cut me.”

Katie and I walked to the parking lot and sat in the car for a minute. I shared some of my feelings with her. Right away, we discussed the desire to get second and third opinions. She immediately made a call to an eye specialist and set up an appointment for the following week. And we began praying for the best. It could have been worse. I’m thankful that it’s not.

Recently, I started thinking about all of the sporting events and concerts that I enjoy attending. I suppose this means that I now have to get as close as possible. Nosebleed seats are no longer acceptable. That’s too bad, I hate sitting close (kidding). There’s a silver lining in everything.

My new spectacles.

Why I Can Embrace My Weakness

Talking about cancer is difficult. In fact, the entire process is one of the most humbling experiences a person can go through.  It’s easy to understand why a lot of people never share their struggles or suffering with others. It’s hard enough to properly communicate the trials and tribulations of a bad day, apart from a cancer diagnosis. Magnify that by life-threatening proportions and one can begin to appreciate how survivors wrestle with emotions that might make them feel as if they’re standing on the narrow side of a steep cliff. One false move and it’s easy to appear helpless, hopeless, or full of pity. Continue reading “Why I Can Embrace My Weakness”

MD Anderson Week 4: Finding Answers

It seems as if each Tuesday gets exponentially bigger. A month ago, I was excited about starting a new clinical trial that may have been effective against the t315i mutation that has thrown my treatment plan into chaos. Two weeks ago, was the first appointment I’ve had since stopping the trial. I couldn’t see that well and the next day it was discovered that the pressure in my eyes was more than double what it should have been. Yesterday, we were scheduled to find out the results of my siblings and parents match testing for a bone marrow transplant. Each week, I’ve grown increasingly more thankful. This Tuesday was no exception. Continue reading “MD Anderson Week 4: Finding Answers”

A Potentially Big Day

This afternoon, around 2:30, we’re having a followup appointment with Dr. Ciurea, my bone marrow transplant doctor. It is likely that we’ll learn if my siblings, or parents, are a match for a transplant that has recently become inevitable. I’ll see Dr. Cortes, my oncologist, around noon. As far as the trajectory of my treatment is concerned, it’s potentially a big day.

Imagine a time when you’ve lost your wallet. You search the areas that you’d normally put it, with no luck. You check the jeans that you last wore, to no avail. You graduate to your jacket. It’s not there. You quickly realize that you are running out of options and the chances of you finding your wallet is getting smaller and smaller each time another location produces no results. Finally, having searched high and low, you realize that the only place that it could possibly be is in your car. On the way out to your vehicle, you think of all of the things that could have occurred to your wallet. You could have left it somewhere, it could have gotten stolen, or maybe it’s in the middle of some barren parking lot, waiting for you to pick it up. There’s a nervous anticipation.

That’s kind of where we are at the moment, except that finding my wallet would mean a life free of leukemia. Six years of turbulence has lead to a figurative trip to the car, and there are only a couple of more places to look. With a t315i mutation, and a bad experience with a trial drug to combat it, I’m kind of in the middle of first and second base, with the ball in the infield. I’m sort of in a little pickle.

If you see this before my appointment, I ask that you pray for the hearts of my family. Although I believe in the sovereignty of a loving God, we’re human and the weight of anticipation has been carried by an intense sense of optimism. Although the percentages may be low, both of my siblings have long desired to be blessed with an ability to save my life. To learn that there’s nothing that they can physically do would likely be heartbreaking.

As for me, I hope for the best and trust in the sovereignty of a loving God. If neither my siblings or parents are viable candidates, there are 42 others in the bone marrow registry that match at least 3 of the 10 markers they look at to consider whether one is a perfect match. More testing would have to be done to see if any of them are close enough for a transplant, but 42 is better than 0. It’s one day at a time from here on out.

“Be joyful in hope, patient in affliction, faithful in prayer.” – Romans 12:12

A New Direction (Posted at Blogger)

I’ve been at blogger for a few years now. I’ve written a lot of things about a lot of different topics, much of which I don’t even like to read again (super old stuff – bad grammar, poor structure, not very good posts at all). Recently, I’ve spent a lot of time writing about my battle with leukemia and the journey to overcome. The positive feedback has really inspired me to capture as much of the emotion, humor, appreciation, thankfulness, etc. that I can, so that one day I might be able to encourage someone who is struggling with something of their own.

Recently, I was contacted and asked to write blogs for MD Anderson, one of the best and largest cancer facilities in the world. I am excited about the opportunity and look forward to the chance to communicate with so many others who are going through much of the same things. As a result, I have decided to move my blog to my own domain. It will allow me the opportunity to stay better connected, to update others more easily, and to stay more organized. If you’ve enjoyed my blog, please go to theozunaverse.com to read more. To receive updates of my blog via facebook, you can go to ‘facebook.com/theozunaverse’ and click ‘like’. Any new posts after that will show up in your news feed. Thank you for following my blogs. Please follow me over at my new location. And always say hi!

For all of you bloggers, I’d like to become a lot more interactive with those who would like to do guest posts, etc. Hopefully, I’ll be able to set that up soon. In the meantime, add me as a friend on facebook.com/themayorofozunaville. Let’s keep in touch.

Valentine’s Day at MD Anderson

I didn’t think that our first Valentine’s Day together would be spent at MD Anderson, but Katie and I are thankful, nevertheless. The truth is that it doesn’t matter where you are, or what day on the calendar it is, love should be celebrated daily in your relationship. The demands and seasons of our lives make it tough to always follow through with that appreciation, but a thoughtful and caring nature goes a long way. I’m lucky that I get to see this every day with Katie, who is thoughtful, caring, selfless, etc. (among so many other things). I try to learn what this looks like in a relationship so that I can reciprocate and give her what she deserves, but I’m working with a much larger deficit, the male brain.

We’ve been together for four weeks straight now. For literally a month, we have been together all day, every day. We haven’t been in the comfort of our homes for very long, we’ve had little privacy, and we only brought one car to Houston so we’re pretty interdependent on one another. It’s the perfect recipe to drive each other up the wall. But it really hasn’t been that way. We’ve only gotten into one stupid argument, and it was because she had just gotten out of the shower and the one dry, clean towel we had was wrapped around her head to dry her hair (I was going to shower next). I got a little frustrated, but we talked about it and an hour later things were back to normal. It takes a special person to endure all of these medical trials as a caregiver, to be thrown about wildly by the harsh waves in the sea of emotions, and to continue to go to MD Anderson day after day with a positive attitude. So before I write about where we are in my journey, I first wanted to say thank you to Katherine. Among other things, I am also a reflection of you. 

Tuesday

If I were on The Biggest Loser, it would be my time to weigh in. Since the clinical trial is on hold, I spent the day following up with tests and transplant consultations. A week off of the trial drug hasn’t shown any significant effects yet. All of my blood counts are still normal. In fact, my white blood cell count has dropped from 14K to 6K, which is still in the normal range. All of that is boring and doesn’t really matter to the average reader, but it’s good news knowing that a week without medication hasn’t allowed my leukemia to start breakdancing and throwing keg parties.

Secondly, I had an appointment with dental oncology at MDA to get clearance for a transplant. Getting dental clearance sounds weird, right? It is until you consider that I won’t have any disease fighting cells in my body on transplant day. If hidden bacterial infections were to pop up, it would make the process a lot more complicated than it has to be. So they screen beforehand. With four wisdom teeth, my mouth is a gold mine for any dentist looking to make a little money. Luckily, they didn’t seem too concerned.

Finally, my favorite part of the day occurred when I received a lumbar puncture, or spinal tap. They could really work on the procedure name because neither one sounds appealing. The procedure itself isn’t bad. In fact, It is way easier to endure than a bone marrow biopsy/aspiration. In fact, if you’ve had a baby, it’s much like an epidural. During the test, they put a needle in my spine to extract and measure the pressure of my spinal fluid, which allows them to measure the pressure inside of my genius brain (I try to use science terms). Because there was so much pressure and inflammation in my eyes, they had to make sure the vision problem wasn’t being exacerbated by something else. 

One of the things that I learned yesterday was that Leukemia can get into the spinal cavity and travel up to the brain. This isn’t very common with Chronic forms of Leukemia so they weren’t too concerned that this was the case with me, but they wanted to check anyway. As a preemptive measure, they went ahead and injected a prophylactic dose of chemo into my spinal cavity. I hope this doesn’t turn me into a Gremlin.

All in all it was a good day. The spinal fluid pressure ended up being within normal limits! ::Celebration:: And I was cleared by the dentist for the transplant. It really puts into perspective what I used to consider a good day and what I now consider a good day. So many people have it so much worse. That’s one of those things that you’re always cognitively aware of, but never really appreciate until you go through it. I remember when I was young and would have to tell my mom that I was finished with dinner. Sometimes I’d leave the vegetables or something that I didn’t like and she’d say, “Ok, but you’re throwing away good food when there are people who are starving.” I don’t know how I was really supposed to understand that context, because I had never, truly seen anyone starve. Maybe if I had, I would have been more cognizant of my own bad habits. I had to grow my appreciation. Now that I’ve lived and seen the hope of good news, it would be hard to imagine how I’ll ever lose that perspective. That’s why I always suggest to someone who is going through something rough to volunteer or do something good for somebody else who is struggling even more. It will change both of your lives.

I was extremely tired all day from only being able to sleep for a few hours the night before, which eventually resulted in a very early bedtime (8:30pm), but I tried to make the most of Valentine’s Day for Katie. We took a lot of pictures, but one or two of them turned out. My eyes didn’t care much for the corporate holiday (eyes = keeping it real). After we left MDA, however, Katie and I went to eat dinner (thank you Mr. and Mrs. Narvarte), and spent some time walking that off in a nearby store. It wasn’t the most eventful Valentine’s Day ever, but it was one that we could both certainly appreciate. 

The Fountain of Little Victories

There was a moment during yesterday’s field vision test where I grew discouraged. My head was against a half sphere that reminded me of a personal planetarium. The inside of the dome was broken up into four quadrants and an orange light illuminated midway up the line that divided the top two quarter panels. A button rested in my hand that created an audible sound when I pressed it. My job was to push it whenever I saw a dot of light in my periphery. I’ve never been so excited to see dots of light. And I’ve never been so bummed when I didn’t.

I sat for a long seven seconds before I grew disheartened. In my mind, I knew that dots were flashing, but my thumb stood still. Maybe it’s because my eyes were tired. After all, I’ve been sleeping more than normal lately. I keep hoping that all my eyes need is a little more rest. Every morning since Sunday has been like Christmas. I wake up with the thought that maybe that day will be the day that my optic nerve head is less inflamed and that my vision is restored. I’m still waiting for the package under the tree.

“How did it go?” asked Katie. I had just walked out of the exam room. The room was really small so she had to wait in the lobby. “Not well.” I sat down in the chair and didn’t say much. Katie hugged me and reminded me that it wasn’t a test of me, but that it was a test for me. “They are just trying to measure where you are so that they can get you to a better place,” she said. And she was right. One of the lessons I’ve struggled with the most is thinking that I can control any of this. I knew that I wasn’t going to do well on the field vision test. I had even told Katie beforehand that I’d do horribly. My vision has barely improved over the past couple of days. But I had hoped that I just didn’t notice the improvement, and that my concerted effort would reveal new progress. When it didn’t, it made me sad. I had set myself up for disappointment, and futility once again called my number.

I told Katie that I didn’t want to write another blog where I sounded discouraged, but I started thinking about how much I need to remember the valleys to truly appreciate the peaks. How disheartened I’d be to look back, after it’s all said and done, and not accurately remember how far we’ve come, how much we’ve been encouraged, and how God has shaped our hearts towards Himself and others. I can’t pretend that disappointment doesn’t exist. It does, and it wants to linger around. It always wants to linger around. 

After we shared some words of encouragement, we spent some time waiting in the lobby for an MRI I’d have later that evening. One of the lobbies to the main building at MD Anderson has a beautiful and serene  waterfall. Like most public waterfalls, it has coins at the bottom from people who’ve made a wish. Since we had just come from the ophthalmologist, I told Katie that we could wish for my eyes to be restored. I really just wanted to drop in a coin and make a splash. So she grabbed some coins out of her purse and we contributed to the MD Anderson Cancer fund.

I, of course, wanted bagpipes, singing children, the choir in Sister Act, and a fog machine to come through the front doors for my photo op., but we couldn’t arrange all of that in the minute that we had. So I settled on a toss of solitude, which will really be appreciated in an art gallery somewhere. Either way, I just hope that while I was doing this, somebody, somewhere wasn’t pouring out a 40 oz. and dedicating it to my eyes. That would have cancelled this out, and it would have been really uncool.

Moments later, I asked Katie, “Did you make a wish?” “OH! Oops!” she replied. Oops? I wanted to go into my Rodney Dangerfield bit, but I figured I better not wear it out. And when I say wear it out, I really mean that I better not get it started. I better not get it started because I don’t really know any Rodney Dangerfield jokes. I don’t get any respect. There. The picture to the right shows Katie taking out another coin so that she can make a wish the right way. We don’t cut any corners when it comes to my eyes.

Finally, Katie found a coin and made a wish. I hope it was about my eyes. I forgot to ask. And I hope that it was more than a penny. I mean, only Larry the Cable guy puts pennies in a fountain, right? I need Katie to start dropping in dimes, so that if I ever need to get my eye removed, I can tell the doc to grab the dime that Katie threw into the fountain and just kind of install it into the socket. If you ever see a surgeon carrying a caulk gun, don’t stop him. Know that it was my idea. Or “eye”dea. (rim shot)

To make sure there was nothing behind the optic nerve inflammation, the ophthalmologist wanted me to have an MRI scan of my brain. So last night, I had my first opportunity to slide into the MRI machine. If you’ve never had that opportunity, it’s probably what you imagine. You lay on a table and they slide you into what looks like an open ended rocket. For about forty five minutes, the machine alternates between noises that sound as if you’re in a life sized pinball machine, like they’re testing new sounds for the emergency alert system, and as though the neighbor’s awkward kid is putting together his first band. I had originally planned on taking a nap in there, but I quickly learned that the idea was a cute one when ear plugs didn’t do much to drown out the sound.

Today, I had a follow up appointment with the ophthalmologist to make sure the pressure in my eyes was still in the normal ranges. The results were great. An 8 in both eyes! Although the optic nerve head is still swollen and inflamed, the pressure has stayed down. More great news is that the MRI test results were clear of any pathological evidence, which further substantiates my doctors’ theory that my sudden change in vision was a result of the trial drug. The prognosis on my eyesight getting back to normal is longer than expected, however. The doctor said it is a matter of weeks, not days, until the inflammation goes down. It was great news, and such a relief. I had begun to wonder if it was possible that suffering through high pressure for three days had incurred some permanent damage. Every day that I couldn’t see made me wonder even more. The news will do a lot for my frustrations. We’ll have more appointments in the upcoming weeks, as we keep an eye on my situation (no pun intended).

It was a great end to a stressful week. Throughout all of the chaos, frustration, big words, cloudy vision, disappointment, heartache, tears, laughter, fears, and ridiculous parking fees, I am reminded that God is good. Even though I still face an uphill battle, God is good. I won’t for a second believe that this life is as good as it gets, but while I’m here, I’ll celebrate our victories with thanksgiving. After all, just because I’m fighting a battle to preserve my life, it doesn’t mean that I can’t lose it at any other point in time. Thank you for your continued prayers. They mean the world.

P.S. I’m not in a wheelchair, but I found it in the parking lot so I had to give it a spin.

The Adventures of Justin McGoo

One of the things I’ve realized since learning that it actually could “happen to me” is that the human mind is fragile. The cancer patient’s mind is even more so. The ophthalmologist appointment confirmed that I am no exception. I would be lying if I told you that my first thought wasn’t a fear that they’d find a tumor or some other form of cancer. That’s not exactly the positive, optimistic outlook I’ve had, but after the previous three days, I’ve been uncharacteristically discouraged, disappointed, and frustrated. It has been four days since I have been able to see clearly, and the blurriness in my right eye hasn’t gotten much better in the past day or two. 

One Day at a Time

I had to reboot my mind this evening. Thinking through my frustration hasn’t worked well for me. Since Saturday, I haven’t been able to read, write, or do much of anything and today I realized that the recent incapacitation has led to a struggle with impatience. Katie has done a great job of reminding me to take things one day at a time, and she’s right. I’ve been getting way ahead of myself these past few days. It’s just been a difficult adjustment for me. I’m not used to feeling so helpless.

We met with the ophthalmologist this afternoon. I performed a series of tests that confirmed I’m a few years away from being cast in The Adventures of Mr. Magoo. The test reminded me of the Brian Regan’s bit about not taking the eye test seriously and ending up with coke bottle glasses:

This was the first time that I’ve ever had a full blown eye exam. I put in the numbing eye drops and was freaked out to learn that they were actually touching my eye when they checked my interocular pressure. I was more surprised when they told me that the normal amount of pressure is 20 and mine was 52 and 43. Anything over 30 is considered an emergency. And to think that my eyes were just a little sore today, sort of the same feeling you get when you stay up all night to study or watch tv. I would have liked to have known what the pressure in my eyes was on Sunday, when the pain kept me bed ridden for twenty hours and was unbearable enough to cause my entire head to hurt.

I was immediately given four different eye drops and a couple of pills to get the pressure down. Then we waited for over an hour to see if the medication would work. My next test resulted in a 19 and 13. Good news. Soon after, they dilated my pupils. Next, they looked for any pathological signs and symptoms. Through that, they found that both of my optical nerve heads were swollen and inflamed. It’s most likely due to the trial drug, but there’s a distant possibility it is caused by a chronic form of glaucoma, which can be a result of MEK inhibitors. Although DCC-2036 is a TKI inhibitor, the ophthalmologist needed to find out if it still fell under the former category. She’s going to make a suggestion to Dr. Cortes that I get an MRI of my brain to make sure there’s no other significant pathological source of my agitated optic nerves. The hope is that it is merely drug induced and that some time off of the drug will give me back my original vision. 

The most important issue is that it is now recommended that I not continue the DCC-2036 trial. I was experiencing a little reluctance to go back to it anyway, but if it weren’t for today, I may have given a lesser dose another chance. There are other options than DCC-2036, but this confirms that we’ll be pursuing a bone marrow transplant as soon as it’s available. That’s the best chance I have to survive. But as for now, it’s one day at a time.

Thank you for all of your concerns, words, and prayers. Your support makes a difference, especially when I have my human moments. My body feels like it’s been in a car wreck. It’s sore from head to toe, as I try to gather back strength. I’ve been off of all medications since Sunday. I’m hoping for a swift recovery of strength and eyesight within the next few days. I’ll write as I can.