Tuesday, March 4, 2014

The Follow Up

March 4, 2014

Last week Ann and I traveled back to Chicago for the first of 6 follow up visits. CIDP patient who participate in this clinical trial will return to Chicago at 6 months, 1 year, and then annually for the next five years in order to have their progress monitored. I was so excited to show off my progress to Dr. Burt and his team.

After we got checked into our hotel and met up with another CIDP patient, it was off to my appointment with Dr. Burt. There I sat in the examination room chair anxiously awaiting my turn. I listened attentively to the voices in the hallway in anticipation of Dr. Burt's arrival. Then all at once the door burst open and Dr. Burt came bounding through it. We abruptly exchanged some pleasantries and then it was down to business.

Dr. Burt, armed with paper and pen, quickly asserted himself at the desk where he would begin firing questions at me. "How old are you?" "When was your transplant?" "Have you had any hospitalizations?" Finally, Dr. Burt asked the most important question, "What can you do now that you could not do before?"

As I explained how I gone from a wheelchair to walking, climbing stairs, driving, and how my stamina has begin steadily increasing. I further explained to him how I felt that I am slowly getting my life back. I could see Dr. Burt begin to beam with delight at my answers. It was not a self full-filling delight; he was genuinely delighted at MY progress.

Once Dr. Burt was finished with my examination he asked a favor of me. Two actually. The first was to share my transplant story with a neurologist who has been shadowing Dr. Burt. Which I quickly accepted. As Dr. Burt asked the second favor, he took my hand and looked me in the eyes and asked me to share my story with the world. It was quite a touching moment between him and I.

The second day brought about pain. It was time to have my nerves tested to see how they are responding after the treatment. I have had quite a few nerve conduction tests over the past 20 years and this was without a doubt the most painful one I have ever experienced. I took this as a good sign and my nerves were finally beginning to work properly. Dr. Allen, the neurologist who conducts these torture tests, was evasive when I prodded him for the results. He assured me we would go over the results at my appointment the next day.

On the final day of my visit I would get a total neurological examination from Dr. Allen and also get the results of my nerve conduction tests. One of the main tests administered is the sit, stand, walk, and sit test. For this test, I started out sitting in a chair. Then I have to rise from the seat and walk to a designated point, turn around, walk back to the chair and sit down. Last year it took me about 40 seconds to do this test using the assistance of a walker. This year I completed this task in 7 seconds and I did not use any assistance (no walker or cane). How's that for improvement? Remember I am on no medicines for CIDP. No IVIG. No Steroids. Nothing. For the first time in over 20 years I am not taking anything to treat my CIDP and my health is improving.

Now, it was the moment I had secretly been waiting for. The results of my nerve conduction test. The verdict was in and Dr. Allen informed me that my numbers had improved since June. However, he did caution me to not put too much stock in my nerve conduction test. He said that I will probably never have a "normal" reading. For me, I realized that I do not care if I ever have a "normal" result as long as my health is stable and I no longer need CIDP medications.

From my trip to Chicago I have once again been humbled. During this visit Ann and I got to meet several families who were in town to visit Dr. Burt. The people we met were at various stages of the process. Some were there for the initial evaluation. One gentleman had just been accepted. Others were waiting to be admitted into the hospital to begin. One had already received the transplant and was just waiting for blood counts to rise. Meanwhile, several were beginning their chemotherapy.

Having the opportunity to meet with these people filled my heart. It makes me realize I need to do more. I keep replaying that moment where Dr. Burt grabbed my hand, looked me in the eyes, and asked me to share my story with the world. I have flirted with the idea of becoming a motivational speaker, but have been afraid to step out of my comfort zone.  I think this is something that I need to explore further. Be prepared......I will probably be posting videos of my story soon.

Monday, February 17, 2014

A Week of Living, Laughing, Loving, and Losing

February 17, 2014

Seven days does not seem like that long of a time. It is just a week, right? Well, as I reflect on this past week it is clear to me that a lot can help in this short amount of time.

For me, the adventure started last Wednesday. I was awoken early Wednesday morning by Ann who informed me that our furnace was not working. Happy, Happy, Joy, Joy!!!! After wiping the sleep from my eyes and shaking the cobwebs from my head I retreated to the basement to solve this mystery. As I banged and clanged on my furnace I had a vision of a scene from a movie called "A Christmas Story." There I was fighting a losing battle against a malfunctioning furnace just like the father in the movie.

In utter defeat, I ascended from the depths of the basement in search of the repairman's phone number. Meanwhile, Ann was busy setting up electric heaters and sending out an SOS on social media....a move which would be so valuable later in the day.

About 2 hours of sitting wrapped up in my Superman Snuggie had passed when the phone rang. It was a friend who saw Ann's plea for help and wanted to offer some help. Then shortly after I hung up the phone it rang again with another person offering assistance. Between the two we were able to solve the problem. It seems that the pipe that brings the air in from outside became clogged with ice. Therefore, the furnace was not getting fresh air and shut itself down. To remedy the problem I used a wire coat hanger to remove the ice from the pipe, restarted the furnace, and heat began flowing through the house again.

And that my friends brings us to about noon on Wednesday. I still needed to drive about 25 miles to the doctor's office to have an x-ray of my back taken, take Taylor to basketball practice, and then head to church. Let's just say that by 9 p.m. I was pooped and I had to get up early Thursday to head back to the doctor's office to get the results of my x-ray.

When Thursday morning came all I can say is "SNOOZE BUTTON." I was a little slow moving, but was able to get up and once again drive myself the 25 or so miles to the doctor. The trip was well worth it. My back is healing nicely and I no longer need to wear my brace all the time. Now, the hard part about Thursday was that Ann and I went to the funeral home to pay our respects to my great uncle who passed away earlier in the week. Rest in peace John.

After we left the funeral home I was feeling a little run down. My throat was scratchy and my ears were beginning to itch. I decided that I would skip Taylor's basketball practice this night and try to rest up because tournaments were Friday.

Friday finally arrived. Along with the snow that was falling on Valentine's Day, Friday brought another trip to the doctor, a quick Valentine's dinner, and Taylor's first game of her basketball tournament.

Saturday brought more of the same. Busy...Busy...Busy. Taylor and her team ended up playing two games on Saturday. In between her games we went to a benefit for a 2 year old who was recently diagnosed with  neuroblastoma. It was amazing to see such an out pouring of love and support for this little boy and his family. Saturday also brought about another loss of a loved one. One of Taylor's basketball coaches lost his father. So it was a very emotional day. Please keep Taylor's coach and his family in your prayers this week as they go through a very difficult time.

Finally Sunday was upon us and guess what....More basketball was on the slate for the day. At this point I think that between fighting off a cold and not getting enough rest my body was running on pure adrenaline. However, I am proud that I was able to accomplish all of these things this week. I even made it to church Sunday night.

It was this week last year that I was officially approved to undergo my stem cell transplant. And there is no way I would have been able to take on a week like this past week. Last year I was in a wheelchair and dependent upon others for assistance in so many areas of my life. Now, I have regained many of my freedoms that my CIDP has taken from me. Even though I am battling a cold, I am thankful that I can drive myself to the doctor. I can drive myself to the pharmacy. I can not stress this enough, but it is truly the small things I am so thankful for.

So, another crazy week of recovery has been filled with laughter, smiles, and tears. 

Monday, February 10, 2014

Live Life

February 10, 2014:

This week I wanted to dedicate a poem to all those individuals who are fighting the fight of life. I also would like to send out a special dedication to all those individuals in Chicago and around the world awaiting to undergo their stem cell transplants to rid their bodies of a variety of illnesses.

 Live Life
© Livelovelaugh
Life is crazy,
and totally unpredictable...
It's going to push you over,
kick you while you're down
and hit you when you try to get back up.
Not everything can beat you.
Things are going to change you,
But you get to choose which ones you let change you.
Listen to your heart,
Follow your dreams,
And let no one tell you what you're capable of.
Push the limits,
Bend the rules,
And enjoy every minute of it.
Laugh at everything,
Live for as long as you can.
Love all,
But trust none.
Believe in yourself,
And never lose faith in others
Settle for nothing but only the best,
And give 110% in everything you do.
Take risks,
Live on the edge,
Yet stay safe,
And cherish every moment of it.
Life is a gift,
Appreciate all the rewards,
And jump on every opportunity.
Not everyone's going to love you
But who needs them anyways.
Challenge everything,
And fight for what you believe.
Back down to nothing,
But give in to the little things in life,
After all, that is what makes you.
Forget the unnecessary,
But remember everything,
Bring it with you everywhere you go.
Learn something new,
And appreciate criticism.
Hate nothing,
But dislike what you want.
Never forget where you came from,
And always remember where you are going.
Live Life to its fullest,
And have a reason for everything,
Even if it's totally insane.
Find Your purpose in life,
and Live it

Monday, February 3, 2014


February 3, 2014

I woke up this morning not feeling too well. I think I have been battling a bug for the past couple of days. The good news is that I am not running a fever. However, my stomach has been upset and I am feeling fatigued. It is the most annoying kind of fatigue. The one where all you want to do is lounge around, but can't sleep. I sure hope this passes and does not turn into the stomach bug that seems to be going around. Think I will be laying low for a few days.

Sitting here this morning and looking out on the fresh fallen snow, my mind began to wander. I began to think about how everyone's recovery from the HSCT is like snowflakes. Just like no two snowflakes are alike; no two HSCT recoveries are the same.

These difference can bring about uncertainty for many of us during our recovery. Is this as good as it gets? Is what I am experiencing "normal"?  Why can I not do the things that others are doing? Shouldn't my results be the same as others who have had the transplant?

What is important to remember is that the HSCT stops your body from attacking itself. It essentially halts the attacks and allows the body to heal itself. I believe that is why the initial recovery for many of us varies so greatly. Our recovery seems to be dependent upon the amount of damage our body has already endured.

I need to remind myself of these things from time to time. That my recovery is my own. I cannot try to compare and compete with others. This is not a race. This is a marathon. The long term success rates of the HSCT speak for themselves.

After my transplant, I had a few goals. The first goal was to be walking with a cane. Check. The second goal was to be able to safely care for myself throughout the day. Check. The final goal was to be driving. Check.

I have reached all of these goals and have began setting new ones. The problem is that I forgot to enjoy my successes of walking, driving, and caring for myself. I am sure that even the Seattle Seahawks are taking time to enjoy their victory. My mindset is to continually push forward. But right now I need to step back and be thankful for how far I have come. Sometimes I forget to be thankful. Sometimes I get frustrated because of what I am still unable to do.

Over the next 6 months, I am going to continue to focus on the little things. The things that I so desperately desired to do only a short time ago. I am going to have to prepare my body for the next phase of life.

Remember, we are all like snowflakes. No two of us are alike and no two of us will respond in the exact same manner. Set your goals. Push toward them. But, don't forget to enjoy them. 

Monday, January 27, 2014

Remember This

January 27, 2014

The past few weeks have been a little rough, but I have some wonderful people in my life who are always here to cheer me up. This week I received a card from my mother-in-law that I wanted to share with everyone. The card says:

Remember this - whatever life may choose to bring your way,
You're not defined by anything but who you are each day....

Remember this - your spirit shines so brightly from inside,
And the light you bring into this world, no clouds could ever hide....

Remember this - you're cared about, there's no one quite like you,
And you've only grown in strength and heart with all you've been through.
I know it is cheesy, but I am realizing that cheesy is OK. I keep telling Ann I need to go get my testosterone levels tested because of how sensitive I have been lately. She thinks I am crazy.

Anyway, I wanted to share this because I think this is a message that many of us in recovery can often forget. We have been through too much to not be thankful for today. As Ann has reminded me, "Today is the day the Lord has made; We will rejoice and be glad in it" (Psalm 118:24). Now it is time for me to go and put my "big boy" pants on and continue moving forward one step at a time.

Monday, January 20, 2014

Back to the Future

January 20, 2014

Well the party hats and kazoos have been put away and the pity party is over. However, for my next pity party I am definitely having cake and ice cream. Maybe even streamers. I wonder why the party stores never carry any "pity party" party supplies? Much obliged for all the kind words and kicks in the pants that I needed.

 Life is not a perfect sequence of events that are neatly laid out in front of us. Life is a long and curvy road. Along the way we will encounter many obstacles. Some good. Some not so good. This past week I went back and revisited my blog. It is easy to sit here and offer words of encouragement, but it is another thing to have those words staring back at you. Doing this reminded me just how far I have come. Reading through my blog also reminded me of how scared of the future I was. I worried that life would pass me by as I wasted away. I no longer have those worries. It is now time to get BACK TO THE FUTURE.

This week has been eventful to say the least. I have had the opportunity to meet and be inspired by some amazing people. My new friend Ken has promised to teach me how to fly fish and how to weld. I can't wait to catch a fish on a fly rod and then weld it to my truck. (Sorry PETA it is a joke). Ken and his wife Crystal are amazing people who have some of the biggest hearts of just about anyone I have met. They have such wonderful stories and have done so by overcoming many hurdles. They are continually paying it forward.

So, what have I learned this week? I have learned that I am still stubborn as a mule. My CIDP may be under control, but there is no stopping my cabin fever. I have learned to be more thankful for the things that I can do. I have learned that as much as I once despised Facebook it is a wonderful tool to connect with others. I have learned that my wife is right more often than not and I need to listen to her more. Yes I admitted it. Men please do not think less of me, but Ann has been on a roll and I need to give her credit. Finally, I have learned the importance of keeping your heart open to new opportunities and relationships.

Since today is the International Day of Acceptance I thought it would be fitting to leave you with another quote from the Bible. "Therefore, as we have opportunity, LET US DO GOOD TO ALL, especially those who are a household of faith" (Gal. 6:10).

Photo: Today !!!!!

Monday, January 13, 2014

Four Walls

January 13, 2014

Thursday will mark 6 months since my stem cells were infused into my chemo depleted body. The experience of my recovery from the stem cell transplant has brought about many changes. I am no longer taking any medications to suppress my immune system or treat my CIDP. I know the procedure worked and my days of being hooked up to IVs are over. I do not know how much of my former self I will recover and that is the mental challenge I am now facing.

After my failed work attempt and my back-aching fall it is apparent that I still have a ways to go in my recovery. Over the past week I have been fairly secluded within the four walls of my living room. Each day these walls seem to be inching in on me. Slowing smothering me and breaking my spirit. Sure I know how to put on the smile and charm to others…I have been doing that all my life. Smiling through the misery. My family are the ones that truly suffers. Ann, Taylor, and Tori have to deal with the highs and lows of my depression. They see the real impact these four walls have on me.

Sharing these feelings is not something that I wanted to do. I prefer my blog to be uplifting and positive, but it has been brought to my attention that this “funk” or “rough patch” can happen. Not everyone will experience these lows, but some do. 

This past weekend I watched a movie I had not seen in sometime. The movie was about a former mental patient who turns his life around and becomes a doctor. At one point in the movie there is a reference made to him being in a mental hospital and how the doctors cured him. His response was that it was not the doctors who cured him but the patients. He realized that by helping others he forgot all about his problems. If you haven’t guessed by now the movie was “Patch Adams”.

After watching that scene in the movie it made me realize how important helping others is to me. When I was in Chicago going through my transplant it was never about how I was doing. I was always more concerned with the other patients on the floor. My motivation for walking the hallways was to catch a glimpse of my fellow Dr. Burt patients. The moment I returned home from Chicago I was already laying the foundation to find ways to help others.

 However, the people I need to help the most are my family. I carry a huge burden of guilt for not being “the man of the house” and seeing all that Ann does. Right now I am uncertain of the direction I am heading. Sometimes a step back gives one the perspective to see a clearer path. Uncertainty, doubts, fear, and anger have all piled into these four walls of my living room. 

I know that I am in good hands and God has a plan for me. Just wanted to share that the "post transplant blues" may occur so that others going through it will not feel alone.


Monday, January 6, 2014

Accident Prone

January 6, 2014

This past summer when I packed my bags and headed home from Chicago infections were my biggest fear. As time has passed and I have been fortunate enough to avoid many of the germs floating around my fears have changed. My biggest fear now is not seriously injuring myself.

For the past few months my health has been steadily improving and I needed to get out and test my boundaries. This included a failed attempt to return to work full-time. My body was just not ready for the demands of working 40 or more hours in a week. The upside about this experience is that I learned that when I do return to work it will initially be on a part-time basis.

Since I am no longer working my energy levels began to return after a few days of taking it easy. Once again I start becoming restless. I piddle around the house looking for things to do. My mind is always jumping from one idea to the next. I feel like I have no direction. I can feel a sense of anxiety and anger building up inside me.

As a teenager I spent a lot of time in the woods behind my parent's home. It was my little sanctuary. It was a place I could be alone with my thoughts. I place where I did not need to worry about anything. I have always felt peaceful in nature watching animals behaving in their natural environment. Watching a squirrel scavenge the forest floor looking for an acorn. Listening to the birds singing their wonderful praises for the day.

For Christmas, my parents got me a camera that I could put out in the woods to take pictures of all the forest dwellers. We open presents on Christmas Eve with my parents, so needless to say I had Taylor out there holding a flashlight while I found the perfect spot for my new set off forest eyes.

The following days were filled with anticipation for me. I just could not wait to see what action my camera may have captured. Almost every afternoon I would go up and check the camera and then I could sit there looking at the pictures over and over again.

Last Thursday was going to be no different day. It had snowed the night before and I was looking forward to heading out and checking my camera. The backdrop of snow really makes the animals standout. I walked to the spot like I had several times, switched out the SD card, and made a couple of adjustments. That is when it all went wrong.

Turning to leave the woods my feet slipped out from underneath me. I came crashing down directly on my butt. I consider myself to have a high tolerance of pain, but in that moment of impact I remember yelling out for help. I knew something was instantly wrong. I heard a "pop" and pains shot instantly into my hips. I actually thought I was going to vomit the pain was so intense. Fear began to set in because I was not sure that I was going to be able to get up.

Laying flat on my back watching the snow falling from the sky I made a decision that I was not going to just lay here. Somehow I was able to get to my hands and knees. The pain intensified. Grabbing a nearby tree I was able to work myself to my feet. Once I reached my feet it was pure adrenaline that got me back to my truck. I knew this was not good and I needed to go the the emergency room.

Ann, who was not too happy about all this, drove me the 20 or so miles to get to the emergency room. I never realized how bumpy many of our state routes were until every bump sent a jolt of pain throughout my body. Never been so happy to finally be pulling into a parking spot at an emergency room.

After I got registered they sent me for an x-ray of my back. Then they stuck us in a room to wait for the doctor. After about 183 minutes (give or take a couple of days) the doctor popped in to tell me that I have a slight to moderate compression fracture of the L1 vertebrae. The good news was that their spine doctor was in the building and he would be willing to see me. So off to sit in another room.

When the spine doctor entered he seemed very confident and reassuring. He explained to me that with the use of a brace and rest I should be good as new in a few weeks. I am able to walk around the house. However, getting up and down out of a chair is quite painful. I go back this week to get fitted for the brace and I hope that my back heals properly.

This fall really took a toll not only on my back, but also on my spirits. It is devastating and frustrating to always be suffering from something. I had been feeling so good and here is another setback. It often seems that I am destined to never leave this house. Wrap myself up in a bubble and forget about the outside world. Just stay put. Never move. Never take a chance. I can feel my heart beginning to harden and I have to try even harder to put my faith in God.

"Why me?" I know that no matter our situation we have all asked this question at some point. Throughout my life this phrase has resonated numerous time in my head. The bible tells me, "Trust in the Lord with all your heart, and do not lean on your own understanding. In all your ways acknowledge him and he will make straight your paths" (Prov. 3:5-6). Sounds easy enough. Well not always.

Hoping to continue to find the positives in the week to come.