Always Back Up Your Blog

I worked on a different website this past weekend and accidentally deleted all of my blog files. My only hope is that I have a backup on my portable hard drive. I’m 85% sure I do, but I can’t find the USB cable to connect it to my new computer.

I’ve ordered a new one, and I’ll get it on Thursday. Crossing my fingers and hoping for the best. Otherwise, my leukemia journey is stuck in my head. Crushing.

Always back up your blog.

UPDATE:  I received the cables to my hard drive and ripped open the box like a four year old at Christmas. I searched for a backup file of my blog and couldn’t find one. I contacted my host company to see if they had a backup and the only one they had was from after I deleted my posts.

My last hope was to log into WordPress.com to see if I had copied my blog posts over on to site. I remembered thinking at one point that I should keep my free blog and stop paying to host this one. The good news: It was there. The bad news: It wasn’t complete. There were a few blog posts that were missing, but a majority of my leukemia experience was there. I’ll take it.

I have a lot of work to do to clean this website up and get it to where it was. That will be a nice project over the next few months, I’m looking forward to it.

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. It doesn’t matter where you are or what day is on the calendar, love should be celebrated daily in your relationship. The demands and seasons of our lives make it tough to always deliberately follow through with that appreciation, but a thoughtful and caring approach to your partner goes a long way.

I’m lucky that, with Katie, I get to see this every day. She is thoughtful, caring and selfless (among so many other things). I’m also lucky to learn what those traits look like when applied to a relationship.

We’ve been together for four weeks straight now. For literally a month, we have been together all day, every day. 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 crazy. But that hasn’t been the case.

We’ve only gotten into one petty argument, and it was because the one clean, dry towel we had was wrapped around her head. She had just gotten out of the shower and I was next. I got a little frustrated that I’d have to dry off with a damp towel. I was wet forever. 😛

It takes a special person to endure all of these medical trials as a caregiver. She’s been thrown into a harsh wave of emotions and she continues to go with me 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

Since the clinical trial is on hold, my day was spent doing follow up tests and transplant consultations. A week off of the trial drug hasn’t shown any significant negative effects yet. All of my blood counts are still normal. My white blood cell count has dropped from 14K to 6K (which is still in the normal range.) It’s good knowing that a week without medication hasn’t prompted my leukemia to throwing keg parties.

Part of the transplant process includes meeting with a dental oncologist at MDA. Getting dental clearance sounds weird, right? It is, until you consider that a transplant means you won’t have any disease fighting cells in your body for some period of time. If hidden bacterial infections were to pop up in the mouth, it would make the BMT process a lot more complicated than it has to be, so they screen beforehand. With four wisdom teeth, my mouth is a dental gold mine. Luckily, they didn’t seem too concerned.

My favorite part of the day included a lumbar puncture, or spinal tap. They could really work on the procedure names because neither sounds appealing. The procedure itself isn’t bad. In fact, It’s way easier than a bone marrow biopsy/aspiration. In fact, if you’ve had a baby, it’s much like an epidural (from what I can tell).

During the test, they put a needle in my spine to extract and measure the pressure of my spinal fluid. That 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 exacerbated by something else.

Yesterday I learned that leukemia can get into the spinal cavity and travel up to the brain. This isn’t very common with chronic leukemias so they weren’t too concerned that this was the case with me, but they wanted to check anyway. As a preemptive measure, they injected a prophylactic dose of chemo into my spinal cavity. I hope it 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!:: 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 I’m always cognitively aware of.

I was extremely tired from only a few hours sleep the night before but I tried to make the most of Valentine’s Day for Katie. After we left MDA, however, Katie and I went to eat dinner (thank you Mr. and Mrs. Narvarte), spent some time walking that off in a nearby store and took a lot of pictures. It wasn’t the most eventful Valentine’s Day ever, but it was one that we both appreciated.

Milk, Cookies, and Delirium

Milk, Cookies, and Delirium

One of the great things about adulthood is being able to get out of bed at 4 in the morning, walk into the kitchen, grab some cookies and pour a giant glass of milk in the widest cup you can find. These are the kind of liberties that we should take advantage of more often. We should just plan out a morning, once every six months, and get up early to do something we would have gotten into trouble doing when we were kids.

That, in a very small sense, is freedom.

Of course, there’s the consequence of not being able to go back to sleep once the demands of the day are upon you. I can’t really help you there.

I didn’t really sign up for this. I woke up from a dream four hours ago with my pulse racing and haven’t been able to fall back asleep. It wasn’t even that bad of a dream, which is sort of frustrating. After tossing and turning for hours, I came into the kitchen for a glass of milk and remembered that we bought cookies yesterday. Katie’s laptop was on the table and here I am. I feel like Santa Claus, post Christmas.

Speaking of Santa Claus, imagine all of the crap that gets left out for him to eat and drink on Christmas Eve. Think about being Santa. You go into all of these houses and find all kinds of crazy food that someone thinks is cute. You’re already beaten down by the chimney thing, and now you have to write a note and lie to little kids, which would really make you the bad guy and create this black hole of judgement, so you end up having to eat what’s on the plate.

If Santa knows if you’ve been naughty or nice, he surely knows that you’re leaving things out for yourselves and not him. Stick to milk and cookies, but make sure the milk stays cold, because there’s an expiration on milk in room temperature. Lukewarm milk is a bad choice.

The Fountain of Little Victories

There was a moment during yesterday’s field vision test when I grew discouraged. My head was pressed against a half sphere that reminded me of a personal planetarium. The inside of the dome was broken up into four quadrants. An orange line divided the top two quarter panels. A button, that created an audible sound when I pressed it, rested in my hand. My job was to push it when 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.

The dots would arrive in one to two second intervals. At one point, I sat for a long seven seconds without seeing anything. I grew disheartened. In my mind, I knew dots had to have been 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 are a little more rest. Since Sunday, every morning has been like Christmas. I wake up with the hope that maybe that day will be the day my optic nerve is less inflamed and that my vision is restored. I’m still waiting for the package under the tree.

“How did it go?” Katie asked.

I had just walked out of the exam room. It was a small room, so she had to wait in the lobby.

“Not well.”

I sat in the lobby chair and didn’t say much. Katie gave me a hug 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.

She was right. One of the lessons I’ve struggled with the most is thinking that I can control any of this. I knew I wasn’t going to do well on the field vision test. I even told Katie beforehand that I’d do horribly. My vision has barely improved over the past couple of days. But I hoped that it was because I didn’t notice the improvement, and that my effort would reveal new progress. When it didn’t, I felt 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 discouraging blog, 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 waited in the lobby for an MRI I’d have later that evening.

One of the lobbies at MD Anderson has a beautiful and serene  waterfall. Like most public waterfalls, coins shine brightly at its base.  Many people have made a wish. I told Katie that we could wish for my eyes to be restored. In reality, I just wanted to drop in a coin and make a splash. She grabbed some coins out of her purse and we contributed to the MD Anderson cancer fund.

I wanted bagpipes, singing children, the choir in Sister Act and a fog machine to simultaneously enter the front doors for my photo op, but sadly, we couldn’t arrange all of that in the minute we had. So I settled on a toss of solitude, which will really be appreciated in an art gallery somewhere.

“Did you make a wish?” I asked Katie.

“OH! Oops!” she replied.

“What do you mean, oops?”

The picture to the right shows Katie taking out another coin so that she can make a wish. 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.
To make sure there was nothing behind the optic nerve inflammation, the ophthalmologist ordered an MRI scan of my brain. As a result, 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’s sounds make you think you’re in a life sized pinball machine.  My original plan was to take a nap in there, but I quickly realized the ear plugs they give you doesn’t do much to drown out the sound. Try taking a nap in an arcade. It was kind of like that.

Today, I had a follow up appointment with the ophthalmologist to make sure the pressure in my eyes were 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 for my eyesight to return 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 began to wonder if it was possible that suffering through high pressure for three days had incurred some type of permanent damage. Every day that I couldn’t see made me wonder even more. The news will do a lot quell my frustrations. We’ll have more appointments in the upcoming weeks as we keep an eye on my situation (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’m 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 fear. I was afraid they’d find a tumor or some other form of cancer. That’s not exactly the positive, optimistic outlook I’ve had in the past, but after the previous three days, I’ve been uncharacteristically discouraged, disappointed and frustrated. It has been four days since I’ve been able to see clearly, and the blurriness in my right eye hasn’t improved 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. Today, I realized the physical isolation 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 the 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 Famous Adventures of Mr. Magoo. The test also reminded me of Brian Regan’s joke about not taking the eye test seriously and ending up with coke bottle glasses:

This was the first time I’ve ever had a full blown eye exam. I was freaked out to learn that, when checking your eye’s interocular pressure, the equipment actually touches your eye. It was even more surprising when they told me that normal eye 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 caused my entire head to hurt. I could have sworn it was a migraine.

During the appointment, the tech gave me four different eye drops and a couple of pills to relieve the eye pressure. We waited for over an hour to see if the medication worked. Nineteen and 13. Good news.

Soon after, they dilated my pupils to look for any pathological signs and symptoms. They found that both of my optical nerve heads were swollen and inflamed, most likely due to the trial drug, but there’s a distant possibility it was 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 suggest that I get an MRI of my brain to make sure there is no other significant pathological source affecting my optic nerves. The hope is that it is drug induced and that some time off of the drug will restore my original vision.

The most important issue is that it is now recommended that I not continue the DCC-2036 trial. I was reluctant to go back to it anyway, but if it weren’t for today, I may have given a lesser dose another chance. I currently have no options outside of DCC-2036, and 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. 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. My body feels like it’s been in a car wreck. It’s sore from head to toe. I’m trying to gather back my 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.

72 Hours

The past 72 hours have been the most challenging period since my CML diagnosis six years ago. On Saturday night, the trial medicine knocked me to the canvas. My body reached a breaking point. The fatigue started a little before 10 p.m. Katie’s brother, dad and I were walking back to our car after a Spurs/Thunder game when I started to experience a little cloudiness in my vision. Street lights developed halos. I was either having the first ever migraine in my life or something else was going on. It worried me.

I went to bed early Saturday night, but there was no avoiding the pain I’d experience when I woke up on Sunday morning. On Sunday, the pain behind my eye matched the throbbing in the back of my head. I couldn’t see much. The feeling was so debilitating that I slept most of the day, only to catch the fourth quarter of the Super Bowl.

I emailed the trial nurse on Sunday night to inform her of my symptoms and she told me to go in for lab work on Monday morning. On Monday, I showed the same symptoms, and the decision was made to temporarily stop the trial. When my body recovers fully, we’ll begin the trial at a lower dose.

I still can’t see very well, so this blog is going to be a little short. I’m sorry if I haven’t been able to respond to texts, calls, or emails. You don’t realize how incapacitated you are until you lose your vision.

There are two things that I now know I cannot do without; my vision and electricity. Katie has been my eyes the past few days. She has been an amazing partner and caregiver. I’m so thankful for all that she has done for me while I’ve been down and out. I couldn’t ask for more.

I’m hoping my vision is 100% tomorrow. I’ll write more when I can. Please remember us in prayer. This has been a really trying and frustrating period for Katie and me. We’re learning how to navigate these rough waters with hope, faith, and thanksgiving.

Struggling with Leukemia: The Bad Side of Cancer Pt. 2

For the past six years, I’ve dealt with Leukemia in one way or another. In part 1 of this blog post, I briefly shared a few of the ways that it has affected me from the outside in. However, the vulnerability of a cancer diagnosis goes a lot deeper than mismanaged appointments, miscommunication and having trouble getting treated. The greatest struggle is the battle within the mind.

I don’t like to talk too much about the negative. I decided early on that I wouldn’t allow myself to be victimized by cancer. In the past, I’ve quickly dispelled any feeling that could lead to self-pity, hopelessness or dependency upon perfect circumstances. More often than not, I have succeeded. This post is about the times that I have not.

A brief history of my illness begins in my hometown of Wichita Falls, Texas. Before I was diagnosed with CML, I lost a lot of weight (25 lbs) over an inexact period of time. I went to my primary care physician, who referred me to a gastroenterologist. After blood tests and a CT scan, he called and told me that I may have leukemia and that they would set up an appointment with the oncologist the next day.

I remember everything about that moment, as if it were the most vivid dream I’ve ever had. It may have been the shock that absorbed my natural reaction to such devastating news, but I saw a glimpse of the attitude that I carry to this day; “What do I need to do?”

For four years, I struggled with the events described in part one of this post. Life seemed to flow and I was doing what I could to create a situation to where I could go back and finish school (I dropped out when I was diagnosed with CML). I accepted a promotion with my company and moved to Dallas. I was excited about the new opportunities of living in a bigger city. Soon after I settled in, I experienced another setback.

I ran out of my Leukemia medicine, Gleevec, sometime in August of 2009. By December, I started to feel physically weak again. Because I started a new job, I never took time off of work to go back to Wichita Falls. I felt good physically, and I felt like I always had time. I could have asked for a day off to go back to my oncologist, but a new job made it difficult to overcome that mental hurdle. Looking back, it doesn’t make sense, but at the time, it did.

Cognitively, I knew I had been inconsistent with my medication, but I hadn’t yet reached the point of doing anything about it. Finding an new oncologist in Dallas wasn’t one of my greatest concerns. I made a lot of excuses. Towards the end of December, I finally called for a refill.

The Wichita Falls office told me that to receive a refill, my doctor would have to first see me. But I never went back. Instead, I had them refer me to an oncologist in the Dallas. I received a call from Baylor Medical Center a day later. Because of my history of non-adherence (inconsistent visits and treatment), they wouldn’t accept me as a patient.

I remember growing briefly bitter towards them for not taking me in. I felt as though they left me out to die. It was such a lonely feeling. That rejection resonated with me and I couldn’t shake it. I had no idea that I could be denied as a patient.

The rejection was a good thing. It was first time I realized I needed to make some major changes. I could no longer live as if I didn’t have leukemia. The balance of life and illness that I emphasized early in my illness had tilted towards irresponsibility, and I knew I was to blame. A couple of days later, I learned that Dr. Collins at UT Southwestern Medical Center would see me. I picked up the baton and decided to be a full participant in the race.

For the next three months, I did everything I could to show a renewed commitment to my body, mind, and spirit. I began exercising, eating healthy and taking my medication religiously, regardless if I could “afford it” or not. I made every doctor’s visit, asked every question I could think of and didn’t make any excuses. I began feeling good about the process again.

I was still on Gleevec. My blood counts normalized and things were going well. After three months of continued therapy, they conducted a bone marrow biopsy. I was excited to learn how well my renewed efforts would pay off. Even Katie came into town that week so she could go with me on my visit.

Dr. Collins walked in and sat on a stool across from me.

After some brief conversation, I asked, “So how are things looking?”

He adjusted his posture in a way that suggested his answer wasn’t entirely positive.

“Well we’re seeing progress, which is good” he said, “but we’re not seeing the kind of progress that we had hoped for at this point.” “What do you mean exactly?”

“Your cells may be mutating, and I’d like to run tests to see how. In the meantime, we’ll start you out on a 2nd generation drug called Sprycel.”

I could feel my eyes tear up as we talked. I had always kept it together, but I thought of all the hard work I put in over the previous few months and the lessons I learned.

Katie sat to my left. I kept thinking that I needed to keep it together for her. I couldn’t look over. Dr. Collins kept talking, and my eyes struggled to hold my tears. One tear rolled down my cheek. Dr. Collins stopped talking. Another tear rolled down my other cheek. I could feel his compassion.

Katie hugged me, and I could no longer hold back. I cried. That was the first time I realized that cancer was out of my control. My body had betrayed me. We completed our visit, dried our tears and walked out the back door of Dr. Collin’s office. I knew I’d have to start all over. By the time that I got home, I was okay with that. I just needed a little time. It felt good to cry.

A few weeks later, I was sitting in my work truck, eating lunch in the middle of an empty parking lot when my cell phone rang. It was a representative with UT Southwestern.

“Hi Justin, this is (?) from UT Southwestern. Dr. Collin’s office wanted me to call to inform you that we received your mutation test and you have what is called a t-315i mutation. There isn’t any known medication to treat this. If you’d like, we can refer you back to MD Anderson.”

What does that mean?

“I’m not sure. I’m just relaying information….”

I was numb. I got off the phone. I searched the web and pulled up a website that confirmed exactly what she had told me. I felt the universe shrink.

“This is it,” I thought, “I can’t believe it.”

I called my mom. She didn’t answer. I called my dad. As soon as I heard his voice, I began to sob. I could no longer keep it together.

“It will be okay,” he told me. “We’ll do everything we have to do to get through this.”

It was just what I needed to hear.

I struggled with a lot of emotions after that day. I didn’t want to finish my work, and I didn’t want to call my boss and tell him what had happened. In fact, I didn’t want to do anything. I tried to digest the feelings and emotions. I sat still, and was quiet.

The rest of the story is written in my blog. I’m proud to look back and read some of my older blogs and realize that I allowed myself to feel the pits of emotion without allowing them to control me. I experienced every emotion to the full and then I let it go. Every time. It was like experiencing a rain storm. It was dark, gloomy, wet and sometimes miserable, but what resulted from it had the potential to be nourishing. I had to focus on the end result.

There are still moments when I lay in bed and doubt everything. I’ve had moments of resentment, regret, low self-esteem and heartache. I’ve felt hopeless, helpless, isolated, vulnerable, worthless and have second guessed everything I’ve done. When I post a blog, I question if I’ve been too open and honest. However, none of those things define me. I don’t allow those feelings to stick around.

Here’s one of my favorite scenes from The Pursuit of Happyness:

And just know that each one of us has a purpose on earth. Choose to be a part of it, no matter the circumstance. Be a fighter.

“More than that, we rejoice in our sufferings, knowing that suffering produces endurance, and endurance produces character, and character produces hope, and hope does not put us to shame, because God’s love has been poured into our hearts through the Holy Spirit who has been given to us.” Romans 5:3-5.

“Your faith produces perseverance. Let perseverance finish its work so that you may be mature and complete, not lacking in anything.” James 1:3-4

Never give up during your lowest moments. On the other side of that is the new you. It doesn’t have to be anything as life-threatening as leukemia. In fact, it probably won’t be. But it will be something, and you’ll have the chance to inspire others. Please don’t miss out on that chance. It’s one of the greatest gifts in this world.

Every day, I thank God that I’ve been through the lows. It makes the highs that much more special.

Six years ago I stared into an ocean. Today I swim in it.

Struggling with Leukemia: The Bad Side of Cancer Pt. 1

I have leukemia.

I am lucky.

I never think of one phrase without the other. It may sound like I’m crazy. After all, life would be much easier if I didn’t have a life threatening illness. If I could choose my own path, I wouldn’t go through any of this.

I’m lucky because I have chronic myeloid leukemia. It’s a manageable, slow producing blood disorder that, to this point, is treatable with oral chemo. As long as it is suppressed, it won’t evolve or spread like other cancers.

I’m lucky that I developed this cancer in my adulthood, when I could process all that was going on.

I’m lucky that I live in an era where treatments exist and I have a good chance to survive.

I’m lucky that I have a strong support system.

I’m lucky that I’ve been given a significant chance to grow as a person.

I’m lucky to live close to a great cancer center, MD Anderson.

And most importantly, I’m lucky that I have a relationship with a loving God who has laid all of this out for me.

For the past few months, I’ve shared many of the thoughts, feelings, and perspectives that have helped me deal with my cancer. The positive responses have been overwhelming.

Countless people have told me, or someone I know, that my blog has inspired them, I have been the one who has been inspired by you. This has been a difficult, yet amazing journey.

Between blog posts, prayer, self-reflection, there are the human moments where I wonder if I really believe all that I say. Frustration and vulnerability try to continually permeate the shield of perspective.

I would be doing myself, and everyone else who reads this blog, an injustice if I allowed anyone to walk away from here thinking that I am not vulnerable to the doubt, negativity or feelings of hopelessness that we all face in a world full of bad news, broken relationships and unanswered questions. That’s why I’ve decided to blog about the negative side of dealing with a chronic blood cancer.

The first lesson you have to make with any cancer related illness is how vulnerable you’ll allow yourself to be. I decided the best way to deal with what was thrown at me was to be as open and honest with it as I could be. I didn’t want to keep it to myself. I wanted to allow others to love me, because I had first loved them. If talking about my illness and sharing my positive attitude meant that I could make someone I cared about feel a little better, then that was something I wanted to do. I knew that if I could learn from the good and the bad, I’d be in a much better place, physically and emotionally. I didn’t push my vulnerability upon other people, but I didn’t keep it from them either. It seemed to have worked out perfectly.

“I had no idea you had cancer.”

The first few years that I had cancer, only the people who were around during the diagnosis knew I had leukemia. I made a subconscious decision early in my diagnosis to embrace the that I was living with cancer. I never wanted to use it as a crutch. To me, that meant living my life as normally as I could. On days when I experienced fatigue and nausea, I’d fight through it. CML was a lifelong disease, and I didn’t want to begin conceding to the “new normal” when I was 24 years old.

It always surprised people when they found out I had CML.

“Wow, you look great. I couldn’t tell,” they would say.

I’d always just say thank you. Was I supposed to look like a zombie, drug addict, cancer patient? Over time, not intrinsically acknowledging that cancer changed the trajectory of my life caught up with me. The habitual suppression of symptoms led to communication issues in relationships with oncologists, employers, and those closest to me.

One personal challenge I often encountered was taking time off of work for doctor’s visits. My job required others to make up the work I was unable to perform when I was gone. I felt guilty that others had to do more because of me, so I often disregarded or rescheduled appointments as a result. That was easier than managing internal guilt. I could have (and should have) expressed those feelings with my boss instead of internalizing them. I could write chapters on these feelings and areas of mismanagement. Hopefully one day, I’ll get to do that.

Although physical and behavioral deficiencies shaped the early years of my cancer treatment, the most difficult part of my journey came when I learned that my leukemia cells had mutated and that my chemo was no longer working.  I’ll share some of those experiences and mental struggles in part 2 of this blog post.

MD Anderson Week 2: Donating All of My Blood to Science

MD Anderson Week 2: Donating All of My Blood to Science
Results day.

I feel like a contestant on The Biggest Loser, except that I’m trying to shed Leukemic cells instead of pounds. If feeling ill is an indication of success, I’m the big winner for the week.

As expected, the past seven days has had its ups and downs. DCC-2036 hasn’t been as kind and forgiving as the other drugs. Nausea gives the chemo personality and the occasional headaches indicate it likes to party. However, if this is the downside of a life free of uncertainty and chaos, I guess I can get used to it. In the meantime, maybe the Zofran will keep me from waking up every day and thinking I’m pregnant. I empathize with your morning sickness, moms.

This is the second week of five that I’ll have to be at MD Anderson. I only go in one day a week for now. I want to save the gift of hospitalization for the possible bone marrow transplant. I need something to look forward to.

Today was the long day of the trial. Before I could eat, I was fitted with a butterfly IV. I walked into a room, a tech pulled the curtain closed and I cried at what was to come. Kidding, I didn’t cry, but all I knew was that I would have to give blood at different intervals for the next four hours. That is not something I like getting up early for. I’m thankful Katie is here to make this process as good as it can be.

The day went a little like this: Blood draw, EKG, blood draw (15 minutes later), blood draw (30 minutes after that), another blood draw (30 minutes after that), a blood draw (an hour later) and finally one last blood draw (two hours after that). As I write this, my left arm is half the size of my right arm. Think: one full limb, one raisin attached to a shoulder. The purpose of the testing is to see how much of the chemo is in my blood at each of the given intervals.

I wasn’t sure if I was going to make it through the EKG alive. As I lain on the table, I heard,

“Uh oh, well that’s not good.”

I looked over to the paper print out. It was blank. I felt my body go cold and vivid images flashed before my eyes.

“My body is floating towards the ceiling. Do you think I’m going to make it?” I asked.

“I think so,” she laughed. “I just had to reattach a loose cable.”

The results of the blood tests look great on the surface. We are starting to see my white blood cell count decrease and fall back into the normal range.

Although this is great news, it’s just the tip of the iceberg. My old medicine gave me normal blood counts. The problem was at the cellular level. For oral chemo to work, it has to eliminate the genes that produce abnormal white blood cells. The hope is that the new Sheriff in town (DCC-2036) shapes up and ships out. Otherwise, we’ll have to start over with something else.

After all of the testing, Katie and I went to a required class to prepare us for the bone marrow transplant. The more I find out about the process, the less scared I become. The less scared I become, the more likely I am to say screw the trial and move forward with the transplant.

Thinking about the long term affects of having chemo in my body, even if in pill form, is not something that’s very appealing. Especially when, at any given time, I could be drawn back to the dragon that I could have slayed when I was young and capable of enduring the harsh bone marrow transplant process.

What’s important this very minute though is food.
Katie agrees.

Wedding Table Ideas

 

This afternoon, Katie and I were sitting on the couch, each with a laptop in our lap, doing completely different things. Like any woman in the year 2012, I was looking at Pinterest. Kidding, Katie was the one looking at Pinterest, among other websites. Her goal was to try and pin down a color scheme for our wedding. After asking for my opinions about many different ideas, she showed me a table centerpiece that looked like a tree. I really liked the centerpiece because it sparked a lot of other ideas.

Since Katie no longer wanted to listen to my ideas, I thought I’d bring them here. My first idea is to have a centerpiece like the picture above, but with a bird’s nest in it. Not just any bird’s nest, but a nest with baby birds inside. I want all of the birds to have on tuxedos and top hats.

Feeding guests would be rude if we didn’t include the birds, so we’ll make the momma bird a baby plate. She can then baby bird the food to the chicks in tuxedos once we give them the sign to break bread. This will drive up the costs a little, but it will be worth it. Pretty soon we’ll be the talk of the town. Best wedding ever.

I can’t wait until my incredible ideas open the door for more of my valuable opinions.