Friday, June 28, 2013

Pardon the Interruption

As the month of June approaches its end, so does our time here with our daughters.  They have no idea the strength they gave to me this past month. 





I cannot believe how much has been accomplished this month.  It seems like just yesterday I was going through all the pre-tests to ensure my body was capable of handling the stem cell transplant.  Now here we are planning to go home and prepare for the next phase in this process.

This month, I have shared and learned more about CIDP than I did in the prior 20 years.  Recently, I was asked by a member of the Neuropathy Association (www.neuropathy.org) if I would give permission for the association to share my blog with its members.  I cannot tell you what an honor this is for me.  I have not always been open or candid about the nature of this disease.  However, by sharing my experiences through this blog, I have witnessed how my story is able to comfort others and how theirs have been a comfort to me.  

Tomorrow we will be heading back to Ohio to spend time with our families before returning to Chicago the second week of July.  Since we will be home I will not be as active on updating the blog.  However, I will monitor it and respond to any questions. 

Since I won't be posting as much, I thought I would leave you with a riddle.  Don't give into the temptation to look up the answer on the internet.  It spoils the fun! Here goes: I can run but not walk. Wherever I go, thought follows close behind. What am I?

Good luck to all in the week that lies ahead and may all of you have a safe and happy 4th of July.

 -- Get the hi-res version!

Thursday, June 27, 2013

Harvest

Today was a long and rewarding day.  We woke up at 5:00 a.m.so that I could take my neupogen shots and arrive at the hospital by 6:30 for the placement of my catheter.   All went well and then we were off to the Rube Walker Blood Center for the start of the stem cell collection process, otherwise known as "Harvest Day".


This picture is of me once I was hooked up to the collection machine.  As you can see, I had the catheter placed in the right side of my neck.  They need to use the catheter because of the large volume of blood that will be extracted and returned to me in a short amount of time.  The nurse told us that during this process my blood will essentially be circulated through my body and this machine at least three times.  


For those of you out there who have tried plasma pheresis this machine should look quite familiar.  This apheresis machine is used for many different types of blood collection.  In my case, today, it was used to collect the plasma and stem cells, separating them from the remaining parts of my blood.  The remaining blood was warmed and returned to my body along with normal saline solution.  It amazes me how this machine is capable of separating all the different parts of our blood.  In this picture, you can see the stem cells that have been collected in the upper right hand corner.  The bag that has the red liquid in it.  One thing to remember when moving large amounts of blood in and out of the body is that your calcium tends to fluctuate.  As a result, you will feel tingling in your lips and hands.  To help prevent this, a bag of calcium is normally given to the patient during this procedure.  Today, I had an unusual amount of tingling in my lips and hands so in addition to the IV bag of calcium, I was also given Tums as often as needed.  Although everyone's experience is a little different, my collection time, or amount of time hooked up to the apheresis machine, was about three hours in length.  This does not include the total amount of time spent in the blood center, which for me was about six hours.  Once the stem cells are collected, they are sent to the blood bank where they are counted.  For the CIDP stem cell transplant, a minimum of 2 million stem cells are required.  I was fortunate that my body gave up 17.89 million of these tiny cells.  In addition, the nurse said that I will still only receive 2 million stem cells during my transplant in July, but the extras will be saved in case I ever need them in the future.  Once my nurse had received word that my stem cell numbers were above the minimum and my platelets were normal, the catheter was removed.




 It was important to Ann and I for our daughters to see first-hand this part of the stem cell process.  The girls were very intrigued as they watched the apheresis machine work its magic.   My hope is that from these experiences our daughters will grow up to have a compassionate heart and an undying determination to continually strive to reach their goals.

Tonight as I lay here exhausted from the day I feel a heavy weight has been lifted off my shoulders now that my stem cell harvest is completed.  As I have reached the midpoint in this journey, my heart goes out to those who are struggling with this disease and don't have the same opportunity as me.  I still have a long windy road to travel, but along the way I want to help as many people as I can.  Ann and I plan to establish a foundation to ease the financial burden of this disease for others and give back for all that we have been given.  It may only be a dollar today, but in time it is our prayer that it will continually grow.  Phillipians 4:12  I know what it is to be in need, and I know what it is to have plenty. I have learned the secret of being content in any and every situation, whether well fed or hungry, whether living in plenty or in want.















Wednesday, June 26, 2013

Be The Change You Wish To See

I am not sure who coined this phrase first. It was either Gandhi or an eccentric guy I coached football with. Last night, I got to see with my own eyes the change I wish to see. I met a lady who had the stem cell transplant 4 years ago. She explain how she had gone from being so weak that she was having trouble swallowing to recently signing up for surfing lessons. Sitting there listening to her and her husband explain to us their experiences made me realize that although the toughest part of the journey is still in front of me the results are worth it. As we said our good-byes for the evening I took away some valuable advice from this lovely couple.

They stressed repeatedly to Ann and I how important it is to keep a positive attitude and to surround yourself with only those who are supportive. I figure we have this one covered as we have so many people following our journey and already offering words of encouragement.

The second piece of advice was to always carry a pen. Think about how many people have touched the pen at the bank. Gross right? You know that pens in banks or restaurants are never cleaned and have been touched by who knows how many people.

The last one, and probably the most difficult one for me, was to allow your body time to heal as much as possible. She told us that she did not really leave her home for a solid 12 months. She talked to her friends and family on the phone. Absolutely no one who was sick or even around someone who was sick was allowed in. During the first year after transplant is a time where a lot of healing is taking place and it only takes one minor cold or infection to setback the healing process. By sticking to her strict regime of hand sanitizing and keeping people at a distance she went 18 months before she had to go to her family doctor for a sinus infection.

It was an honor to be able to sit down and talk with this couple. I have been amazed at the love and support of those who were mere strangers just months ago. As my tests continue to return positive results, the path to being the change I wish to see is becoming clearer.




Tuesday, June 25, 2013

What a Difference a Day Makes

Do you remember reading my post from yesterday saying how good I was feeling? Well, the Chicago Cubs baseball team must have broken into my apartment last night and taken turns hitting me in the back with their bats. Boy, me and my big mouth.

 For those of you out there who are either getting ready to start the stem cell transplant or thinking about it please know that Dr. Burt and his team do a wonderful job of explaining the entire process and they are willing to do just about whatever it takes to make this process as comfortable as possible.

I have learned to embrace pain as a guiding force throughout my life. Pain has taught me that stoves are hot. Pain has taught me that when using a hammer hit the nail not the thumb. Waking up and feeling all the aches and pains has always let me know that I made it through another day. For the most part, I think it is safe to assume that pain is generally met with a negative connotation. Or to put it a better way, pain is usually a sign that something is wrong. Today, my pain is not that type of pain.

After my first year coaching a group of 9 and 10 year-old kids baseball one player on the team got me a shirt for my birthday that said, "Pain is weakness leaving the body." During this time I was having some difficulty getting around, but I was truly touched by this gesture. All how perfect that saying is now. As the pain from the Neupogen shots kicks in, I am staying fixed on the phrase from that shirt.



Monday, June 24, 2013

Monday, Monday

Not much is on the agenda for today (Monday June 24, 2013).  I had my labs drawn earlier. The doctors are wanting to get a complete blood count and rule out any active infection with my lung. I was told they would call me with the results later in the week.

I know this may sound weird. I am getting a little concerned that I am feeling so well. I feel better now than at any point I can remember over the past year. I have been warned that by Tuesday or Wednesday I should be really feeling the affects from the Neupogen shots. Time will tell.

As my stem cell harvest day quickly approaches, I am looking forward to coming home and spending time with family and friends before beginning the next leg of the journey. There are tough days in my future. I just know that everything I have gone through has led me, and prepared me, for this opportunity.



Sunday, June 23, 2013

Grass: Chicago's Next Endangered Species

I am glad to report that all is going well. I have officially begun the second phase of the mobilization process, which includes giving myself Neupogen shots and taking my antibiotic and anti-fungal medicines.  Also during this time the doctors have informed me that my blood counts will continue to drop and possibly bottom out on Monday, making me Neutropenic.  Since I will be at such a higher risk for infection, I have decided to stay close to the apartment.  This will give Ann and the girls some much needed Mommy and Daughter time. 

Last night I had a bright idea of walking to the end of the street to watch the Navy Pier fireworks.  As we were leaving our building, I asked the gentleman at the front desk if he had any recommendations for a good spot to watch the fireworks.  He suggested walking to the end of our road and setting up camp in a grassy area in front of the neighboring apartment building.  Making our way toward the recommended location it felt like a perfect night for watching fireworks.  We quickly located the grassy area, sat down, and watched as the boats on the lake jockeyed for their spot to view the upcoming firework display.  While all this was going on  and we were settling into our perfect spot, Ann had made the comment that we would most likely be told to stay off the grass.  It was just about that time that I noticed a silhouette  of a man carrying a flashlight approaching from the shadows of the apartment building.  We had been caught!  I could not believe they were actually going to kick us off the grass. With every step the man took toward us I could feel my defiant nature growing. This was going to be a matter of principle. In an area that has so few grassy areas they should be enjoyed by all; not simply admired from afar. As I played the scenario out in my head, I kept coming to one conclusion that ended with me laying in the fetal position on the sidewalk surrounded by a cloud of pepper-spray.

Now the security guard was upon us giving us the "Stay off the Grass" speech. I still was not sure how to handle this situation. I did know that a man with a suppressed immune system should not be getting pepper-sprayed or spending a night in the Cook County jail.  In an effort to stall, I took a long drink from the Pepsi I had with me. My attempt to rationalize with the security guard resulted in me trying to explain where we were staying and this spot had actually been recommended by the doorman from our building. My pleas seemed to fall on deaf ears and the security guard just kept repeating, "You just can't be on the grass. I don't care where you sit, just not on the grass." I could see that the man was merely giving me his standard orders and he was not even listening to what I was saying. So I did what I hope anyone would do. I had my family move to the sidewalk only inches from the building's precious grass.

Finally, the fireworks were underway. Crisis adverted. We were now enjoying a wonderful display of fireworks. The girls were oohing, aahing and discussing their favorite fireworks. I, however, could not help but notice that we were being constantly watched by security.

All in all, another lasting memory has been created. It will always be nice to look back on the night we sat on a sidewalk in Chicago and watched the fireworks.






Saturday, June 22, 2013

A Blog about a Blog: How to Post

Several of you have mentioned that you have tried to post a comment and it has not allowed you to do so.  We thought we would write a post on how to post a comment to our blog site.  I know that many of you keep up to date on Bryan this way and many times this is your only way to keep in touch.  It is as important to us, as it is to you. So, here we go:
  • Step 1: At the bottom of each entry in the blog, there is a comment section.  Click on the blue words that say, "No comment" or if there are comments, the line that says "2 comments", etc.
  • Step 2: A box will open at the bottom of the post that says, "Enter your comment."  Type your comment in the box.
  • Step 3: Underneath the box that you typed into, there is a drop down box that says, "Comment as..."  Select either the profile,  "Anonymous" or "Name/URL"
  • Step 4: 
    • If you pick "Anonymous" then click the box at the bottom that says "Publish".
    • If you pick "Name/URL" a new box will pop up that has a place to enter your name.  You can leave the URL box blank.  Then click on the box that says, "Continue".  Then you will click, "Publish".
  • Step 5: You will then be shown a box that shows something like this:
    • ""
      reCAPTCHA challenge image
       
  • Step 6:  Enter the two words that you see and then press "Publish".  You should be given a confirmation that your comment was received.  If you entered one of the above characters incorrectly, then you will be given another chance to enter the characters.   
It is important to us to continue to get feedback and continue to get questions, so please let us know if this helps.  

Friday, June 21, 2013

Weekly Update

I wanted to let everyone know things are going fairly smooth here. The first few days after my chemo I was tired and had an upset stomach. I had read countless other testimonies from stem-cell patients warning the newcomers to not be too tough, or proud and to take their meds. Me being me, I did not take the anti-nausea medicine until I was absolutely miserable. So my advice is, "Take your medicine!"  No, really, take your medicine.

Today (Friday, June 21, 2013) I actually feel like I may have gotten a boost. I woke up this morning feeling refreshed and stronger. I also received a call from Dr. Burt's office today to check my progress and go over my instructions for next week. So far, my temperature has been normal, with the exception of one evening it went to 99.4.  It went down right away, so nothing came of it. 

Starting tomorrow I will begin my Neupogen shots. Two shots in the belly for six days.  I also start the antibiotic and anti-fungal medicine tomorrow.  I am not sure how all of this will make me feel.  Therefore, I plan to rest and take it easy this weekend.

Then, Monday, I will go in to have my labs drawn.  They are doing blood work to check my white counts.  Also, they are running another test because I have a little scarring on the right lower lobe of my lung.  The doctors have assured me that it does not appear to be anything serious.  They are just ruling out an active infection.  It is possible that I have had pneumonia at some point in my life and just not known it.  Knowing me, it was probably one of those many times that I refused to go to the doctor, adamant that it was "only a cold" that had to run its course. 

Today, Ann and the girls and I went to the Chicago Science and Industry Museum.  Knowing that this was probably the last outing I would enjoy with them for a while, we tried to cram in as many activities and exhibits as possible.  I try to live by the philosophy of "No Day But Today" and take each day as it comes. 

I will leave you with one piece of advice, which is taken from a book I am reading entitled, Neverisms. "Never go to a doctor whose office plants have died." 

Wednesday, June 19, 2013

Mind over Matter

Since my diagnosis I have been aware there would be many things that I would not be able to do. I was told that I would more than likely not be able to have children because of the medications I had to take. Wrong! I have been blessed with two beautiful daughters.

I was told by doctors that I should avoid heat as it may cause my CIDP to flare up. So, I went out and got a summer job at a golf course. We worked from sun up to sun down in the heat of the summer.

Now, as I sit here a day after receiving my first dose of chemo it is hard for me to not reflect on how the events in my life have prepared me for the task that lies ahead. One year ago I was in a deep depression. I had given in to that little voice in the back of my head that said, "It's OK to feel sorry for yourself. You have had a good run. Nobody will blame you for throwing in the towel." I have heard this voice a thousand times over the last 20 years, but I have always been able to use it as fuel to keep pushing forward. However, this time I couldn't fight this voice off. Why? Everyday the voice seemed to get louder and louder and I began shutting people out of my life. I wanted to be miserable. I wanted to feel sorry for myself. I wanted others to feel sorry for me. As I was being sucked into the dark abyss I offered little resistance. Then I hit my rock bottom. I had forgotten how to pick myself up. I was alone in a room full of people.

Then one day I started to hear another voice say, "If you don't mind it doesn't matter." Hearing these words started a little spark inside me. Quickly, this spark turned into a fire. Now, I needed answers. I needed to know why I was so willing to give in. The answers I found were not the ones I had hoped to find.

Prior to my relapse last year I had been coaching baseball and football. I loved coaching. It gave me purpose and passion that I had not had in years. The problem was that I had put all of my self-worth in to how good or bad my teams were. I had forgotten that it was about teaching and inspiring. Once I was no longer able to coach, my self-worth was gone. That is why I could no longer fight off this disease. I allowed what I was doing to become who I was.

Today, I can honestly say that I am a stronger and better person because of the suffering I have endured. My mind has become fixed on beating this disease and paying forward my experiences to those who may be suffering.

I want to leave you with some final thoughts for the day. Do not let your current circumstances prevent you from reaching for your dreams. Remember, as long as you stay fixed on your dreams every setback is just better preparing you for the day your dream does come true.

If you don't mind, it doesn't matter.


Tuesday, June 18, 2013

Why Chemo Now?

This blog has been created to bring awareness and keep our friends and family informed.  Sometimes we take for granted that everyone already knows the terminology that we use.  Hopefully as we go along we will explain each phase better, but if at any time you have any questions, please feel free to leave a comment or contact us through Facebook.  That is the only way for our message to be fully received and understood.  So, thank you to those who have asked the questions.  Keep them coming!  

Well today I finished the chemo portion of the mobilization process and I still have all of my fingers and toes.  So, that is a good thing. 

As I was going through the chemo I received some questions about the benefits of doing chemo now.  Since this blog has been created to spread awareness about the stem cell transplant for CIDP, I wanted to get an official answer from Dr. Burt's team.  Amy Morgan, Dr. Burt's nurse, explained to us that although it is possible to mobilize the stem cells without using chemotherapy, they (Burt's team) believe that there are three benefits for using Cytoxan as part of the mobilization of stem cells.  Here are the three reasons that she provided:

1) Main Reason: To prevent a flare up.  Basically, Neupogen, which is a standard growth factor medication used to generate a large release of stem cells into the blood stream, will cause a flare-up of symptoms in CIDP patients.  The chemotherapy, in this case Cytoxan, helps counteract the Neupogen induced flare-ups by knocking the immune system down. 

2) Promote Stem Cell Growth: Because the immune system is knocked down by the chemo, this promotes the growth of stem cells in the bone marrow and a higher number of cells can be harvested.

3) Dr. Burt's Theory: The chemo wipes out the bad cells and in return you are left with "healthier" stem cells for collection. 


Now that we have all of the medical technicalities out of the way, I must say that I feel pretty good today.  Last night, I felt that there was a war going on inside of me.  I was not running a fever, however I could not stop sweating.  Then, as they were running gallons of fluid through me to help flush out the chemo, the more I peed, the better I felt.  When I talked to the doctors about this, they said that it would not be uncommon to get a little "boost" after the chemo.  As you know, or don't know, patients with CIDP have an overactive immune system.  When the immune system is suppressed you actually feel better, but you will be more susceptible to colds and infections.  Therefore, you must be careful around large crowds and continually wash your hands.  So today, besides not having much of an appetite I do feel like I have a little more energy which I will take any time I can get it.  I have been warned that next week when I start my Neupogen shots, I will more than likely have flu-like symptoms and experience bone pain.  But we will worry about next week- next week.  For now I have been released from the hospital with no restrictions.  So I will continue to explore Chicago with Ann and the girls with no restrictions. 


Monday, June 17, 2013

Mission: Cytoxan; Misson Completed!

Disclaimer: This is Ann writing this tonight, so it probably won't be as entertaining as usual! :)  I guess we will all have to allow Bryan a night off every once and awhile.

Today, Bryan was admitted to the Prentice "Women's" Hospital on the 16th floor.  Although the hospital is called the Prentice Women's Hospital, the floor that he is on is actually for cancer patients receiving chemotherapy.   The admission process was seamless and the gentleman that took us to Bryan's room was very thoughtful and explained the hospital to us.  Once he arrived in his room, Room 1661, we quickly realized how beautiful the view of the lake is.  That view would be healing and comforting to anyone, I bet.
The nurse taking care of him today, Kathy, was very thorough in her explanations to both Bryan and myself.  She even took the girls and I on a tour of the unit.  There were several family style lounges.  One of the family lounges had computers with internet access, a tv as well as a recumbent bike.  In Bryan's room was plenty of seating.  We had a regular chair, a couch that folded out into a twin sized bed and a recliner.  As far as germ precautions we did not have to gown, glove or mask.  Staff had to be fully covered, however as guests each time  we entered the unit, we had to wash our hands or we wouldn't be permitted to enter.  Then, when we went into his room and exited we had to use hand sanitizer.  I don't think that I have had such clean hands in years!

Bryan wanted to make sure that we took a picture of his infusion pump.  Weird, maybe, but I guess it was something that he felt was important.  He said that this was our new addition to the family and who we would be vacationing with this year.   I guess that is his sense of humor shining through despite the obstacles he is facing :)  

On a more serious note, I took notes today as he received each medication because there were so many different IV meds being given.  Most of them I had never heard of.  Prior to the start of his Cytoxan, he was given a bag of IV fluids to hydrate.  Then, he was given Mesna, which is a drug that coats his bladder to protect it from the chemo.  He was given a one time dose of Dexamethasone (which was the horror drug he took last summer), which was supposed to help with the nausea.  In addition, he was given pre-meds for nausea through his IV which included Zofran and Emend.  Once he had all of these, he finally started the Cytoxan.  He was warned that he may experience "wasabi nose", runny nose, back pain, or upset stomach.  If any of these symptoms occurred he was supposed to call the nurse right away.  About an hour into the Cytoxan he was given Lasix which was used to flush his bladder of the chemo.  Fluids were encouraged in order to do the same.  With about 30 minutes left in the two hour Cytoxan dosage, Bryan started to have a weird feeling in his head.  He explained it as somewhat "numb" and it bothered him to move his head too fast.  About an hour later he developed a headache.  Not sure if this was a side-effect of the chemotherapy or if it was from being tired or even from the pre-meds.  Nonetheless he was given tylenol to help with the headache. 

When Amy Morgan, Dr. Burt's nurse, made rounds earlier today she told Bryan that everyone reacts differently to this first dose of chemo.  She said that some people don't even know that they have received any chemo.  Others do experience nausea.  Tomorrow (Tuesday) morning will be the true test of nausea control she indicated.  According to her, Bryan wouldn't have any restrictions once he was discharged Tuesday, 6/18/13, with the exceptions of avoiding undercooked meats, deli meats, raw foods, etc.  Most of this was common sense, but it is still good to know.  She also indicated that although he shouldn't be around large crowds, that he can resume regular activity as tolerated.  To Taylor's delight that even included the Science and Industry Museum.  I was surprised by this because I would consider the science and industry museum to be a "crowd".  Ms. Morgan indicated that because it was a big place and that we would be going through the week it should be just fine as long as Bryan felt up to it.  I guess we'll take her word on that one.

Overall, I would say that Bryan's first experience in the hospital at Northwestern and  receiving chemotherapy was as good as can be expected considering the circumstances.  The girls were real troopers throughout the day today.  Of course they had their "I'm bored" moments, but overall they were exceptionally tolerant of the hospital setting today. 
My prayer is that we all will be a stronger and closer family after this summer.  Of course, I am praying that we are a healthier family as well.  To all of you reading this blog tonight:  If you are going through health struggles of your own, I pray that you find that hope that only God and his blessings can bring.  If you are healthy, take time to pray and thank God for this blessing because every good and perfect gift is from above.  Good night to all and God Bless you no matter your journey. 

Sunday, June 16, 2013

Mobilization

Now that all of the pre-testing is done, I will begin the first step in the stem cell transplant process.  This is a ten day process known as mobilization that consists of stimulating the stem cells to move out of the bone marrow and into the bloodstream.  Tomorrow, June 17, 2013, I will be admitted into the hospital for an overnight stay.  During this stay I will receive a dose of chemotherapy, Cytoxan, followed by 24 hours of IV hydration.   Once this step is completed, I will be discharged and required to take my temperature twice a day.  Should I have a temperature higher than 100.5, I will need to go to the emergency room and page Dr. Burt.  Five days after my chemotherapy I have to begin giving myself Neupogen shots.  These shots will stimulate my stem cells to move out of the bone marrow into the bloodstream.   Then one week after my first dose of chemo I will have labs drawn in order to check my white count.  During this time, I will also be taking Cipro (antibiotic) and Diflucan (anti fungal).  I will be sent home with anti-nausea medicine to use as needed.  Finally, ten days after my chemo, I will have my stem cells harvested.  In order to do this, they place a central line into your neck the morning of the collection.  The collection process is similar to a plasma pharesis, where they take the blood, spin out the stem cells, and then warm and replace the blood.  This takes approximately 5-6 hours in order to collect the needed 2-3 million stem cells.  After the stem cells are collected I will be released to travel until hospitalization on July 10, 2013.  I know that this has been a lot of information, so I plan to continually update everyone as I proceed through each step. 

Friday, June 14, 2013

It's Electric

On Wednesday, June 12, 2013 a series of severe thunder storms swept through the Chicago area, leaving behind a path of destruction.  Fortunately for my family and I we were treated to bright flashes of lightning and loud booms of thunder, but nothing compared to the areas south of the city.  In the picture to the left, you can see both the Willis Tower (Sears Tower) and the John Hancock Building being struck by lighting simultaneously.  For me, I didn't truly understand the power of this storm until the following morning when I saw pictures of tornadoes and reports of baseball sized hail in suburbs around the city.  I'd like to pray for all those affected by the storm, not only in the Chicago area, but clear to the Eastern Shoreline. 

On Thursday, after the storm had passed and the blue skies appeared, it was time for me to have my last pre-test appointment.  This final test was an EMG/NCV.  This consists of a series of electrical currents being sent through your body to stimulate the nerves in order to measure how fast and effective the nerves are conducting.  My wife and daughters were in the room and watched as electrical currents were being sent through my arms and legs.  My daughters were especially surprised at the involuntary movements of my limbs as they were being shocked.  Many times I looked over and Torin, my youngest daughter, was covering her eyes.  After the test was over, Torin's only real concern seemed to be that my underwear was showing during all of this testing.  Isn't it funny the things that kids find important.

During my initial evaluation in January, I had this test performed.  Now the current testing was being done in order to compare this to the January results.  The bad news is that the current tests showed that my nerves are not responding as fast as they did in January and there were some new findings that showed new areas of nerve blocks.  Dr. Allen was surprised that I had only noticed mild effects from the further nerve demyelination.  The good news is that starting on Monday, June 17, 2013 I will begin the process of preparing my body to harvest my stem cells.   It has been no secret that over the past year my health has steadily declined.  I know I am where I am supposed to be. 

Tuesday, June 11, 2013

Lincoln Park Zoo

What a great day! Today was the first day in I don't know how long that the Hinkle family could actually spend a day together without having any other things to do. Well since the weatherman was predicting a sunny 84 degree day we opted for an outdoor adventure.  In my opinion, there could be no better choice than that of the FREE Lincoln Park Zoo.  This zoo is a hidden gem among the hustle and bustle of the city. 
As we began our adventure in the zoo, I can honestly say that my expectations for a free zoo were not that high.  I was expecting to see maybe a few animals lying around in small cages.  Boy was I wrong!  The zoo was full of animals from all over the world.  Not only were the animals terrific, but the exhibits from all regions of the world were spectacular.  One of the first things my daughters wanted to do was attend the cow feeding exhibit.  How sad is it that two girls from Perry County, Ohio have to go to Chicago, IL to feed a cow.
From here we left the farm area and went to watch a seal training and feeding session. 
Not really knowing what to expect at this zoo we spent the entire day going from one exhibit to the other.  I have only been to two zoos.  One in Columbus and one in Toledo.  The Lincoln Park Zoo ranks right up there with them, if not higher.  Here are some more pictures of our day. 












Another great thing about today was that I got to use the electric scooter that Ann's grandma and husband bought for me.  It was so nice to have a little sense of freedom and not have to worry about Ann pushing me around. 
And remember, never go to a free zoo unless you are willing to put up with more animals (humans) outside the cage than are in them.   The good news is that my scooter is equipped with a horn to shoo them out of my way.  If you are ever in the Chicago area, this is a must see.  You can spend an entire day there and if you pack a lunch and park on the street, you won't have to spend a dime!

Monday, June 10, 2013

Shot Through The Heart

You know the 80's song, if not you're to blame!  So if you know the words, sing along.  On a more serious note, or not so serious note, last week I had a 2D echo of my heart and the tech who read the results felt that my heart did not relax quick enough.  I mean, really?  Does this tech know what I am going through?!  I am sure that I have been wound a little tight and excuse my heart for not relaxing.  Well, because this tech's report raised concern with Dr. Burt I was referred to a cardiologist.  Today I met with Dr. Shah and he reviewed my echo.  From Dr. Shah's perspective, my heart relaxes just fine I just happened to appear a little dehydrated.  I have no idea how that could be.  On the day of my echo I had not had a chance to eat or drink anything in about five hours since the start of my hectic test-filled day.  Hence the dehydration issue.  I understand that people have a job to do and some people do theirs better than others.  I am thankful that Dr. Shah signed off that my heart was strong and healthy enough to go through the stem cell transplant. So now one more hurdle has been jumped, one last bridge has been crossed, and one final "I" has been dotted.  I should have my final approval to continue the stem cell process sometime tomorrow.  An EMG later in the week and mobilization is in my near future.  All joking aside, I took comfort in knowing that my heart is healthy and not to blame.  Stay classy Perry County. 

Cussin' Cabbie

Last week when Ann and I were in Chicago on our own, I thought it would be a good idea to take cabs in order to get a true sense of city life.  Well let's just say our two cab rides in Chicago will be unforgettable.  First, as mentioned in an earlier blog, we had the white knuckle ride from the airport to our apartment.  Then we had a profanity laced ride from our apartment back to the airport.  As we were leaving last Friday to go home, we hailed a cab in front of our apartment.  In my opinion, this ride started like any typical cab ride should.  The cabbie was more than gracious to load all of my medical equipment into his cab and take us to our desired destination.  As we pulled away from the curb and the initial small talk faded the crazy-eyed cussin' cabbie appeared.  It started with a profanity filled tirade aimed at another cab driver whose passenger was vomiting profusely out the back window.  Then his rants lead him to share a variety of off-color jokes.  During his uncomfortable monologues he somehow starts telling us about his 2300 square foot house which he shares with his overweight cat.  I don't know much about this cat, but he must have a good sense about people because the cabbie kept telling us about how this cat kept trying to bite him and how he then would cuss out his cat.  As the cussin' cabbie retold these stories you could feel the anger and tension building in the car as the wild-eyed cabbie relived and reenacted his arguments with his cat as we sped down the highway.  Every time he took his hands off the wheel and shook them violently at the imaginary cat in the passenger seat, my heart would pound profusely and an uncomfortable chuckle could be heard.  Now I am not one to judge a person and their relationship with their pets, but if you ask me a man who gives a cat its own room in the house with its own twin size bed may not need to look any farther to find the reason that remain single.  Moral of this story is from now on, transportation to and from the airport will only be handled by the experts at Go Airport Express.  No more cab rides for this Perry County couple!  We joined the ranks of the clinically insane as on this trip we did the unthinkable- we brought our own van. 

Thursday, June 6, 2013

Groundhog's Day

My days are beginning to run together because they are all so similar: Get up; Walk to the hospital in the rain; Get poked and prodded; Walk home from the hospital in the rain; Take a nap; Wake up wondering what day it is.

However, there was a little wrinkle added to my day. Today I started receiving my IVIG treatments again. This morning when Ann and I arrived at the infusion center where we were ushered back to the room by our nurse. She was a tall lady with short brown hair and she spoke with a thick Russian accent. As she was gathering all the necessary supplies for my infusion she was questioning us about the stem cell process I will be doing. As she further questioned me she finally got around to asking me which doctor was performing my transplant, and I replied, "Dr. Burt". When she heard those words her face seemed to brighten and while holding her thumb up she said "Good. Good" in her thick Russian accent. I could not help but chuckle. She then proceeded to tell us that she worked with Dr. Burt for eight years and she had seen the miracles of his work first hand. After the day I had yesterday I cannot begin to explain how comforting it was to hear her speak so highly of Dr. Burt and his work.

As for the infusion, I had kind of forgot how, for lack of a better term, yucky the IVIG makes me feel. The good news is that the staff is very friendly, the rooms are comfortable, and the infusions only take a couple of hours. And most importantly, these infusions are temporary.


Wednesday, June 5, 2013

Hurry up and wait

Not feeling very creative today, just wanted to update everyone on all of the tests done today. 

I don't know what is worse- running late to an appointment or sitting around waiting for an appointment. As late as we were on Monday, we were equally early today. It's funny how things tend to even themselves out in the long run.  I started off with my dental consultation.  Everything checked out and I guess you could say my pearly whites are pearly white.  Then we visited the "Blood Center" which is where my stem cells will be harvested.  A nurse from the blood center explained to us the process and answered any questions that we had.   Next I had a CAT scan done of my chest.  Finally, the moment arrived with my appointment with Dr. Burt.  Due to an elevated protein level in both my blood and urine Dr. Burt had to perform a bone marrow biopsy.  Then he explained that there was a minor issue with my echocardiogram and I will need to see a cardiologist next week.  The good news is that none of this should delay the transplant.  Also, Dr. Burt noticed that I was much weaker than when I first met him in January, therefore he wants me to start back on my IVIG transfusions again.  They will take place in the "Blood Center" starting tomorrow and lasting up until my stem cell transplant.  This was something that I was hoping to avoid, but I guess it is a necessary evil to help build my strength prior to the transplant.  All in all it has been a good day as we are moving closer to the transplant.  Just pray that the tests come back negative and that the IVIG helps to strengthen me and carry me throughout this journey. 

Monday, June 3, 2013

Testing 1,2,3...Testing

Today I started my pre-transplant testing and throughout the entire day I felt like a dog chasing its tail; running around in circles and never going to catch it.  We were scheduled to arrive at Northwestern at 8:45 to pick up my lab orders.  We actually arrived early (hard to believe with Ann, I know!)  and noticed four people in line ahead of us.  After standing there for about five minutes and the line not moving, we noticed one lady was working behind the counter trying to do the job of three.  Trying to be patient and optimistic for the day ahead however as the minutes ticked away so did my patience.  After 25 minutes we finally approached the desk only to be handed a stack of orders and sent to another area of the hospital for the labs to be drawn.  Once arriving at the blood draw center, I noticed it had more of a resemblance of a butcher shop.  You pull a number and wait for your number to be called.  After I drew my number I realized I still had at least 10 people ahead of me.  There was no way I would be making my next appointment scheduled for 9:30.  After 20 minutes of meditation and Ann consoling me, it was finally our turn. Because my orders were 14 pages long, the unit clerk checked and rechecked and checked them again to ensure she had entered all of the orders into her computer and printed the correct labels.  Bless her soul, this took another 20 minutes.  Once back in the room waiting for the blood drawer lady to show it became apparent that today's appointments were going to fall like a set of dominoes.  Luckily the lady was a good stick and she quickly filled all the tubes.  However, once she took out the needle and began labeling the tubes, she realized that we were one short.  Break out another tourniquet and needle!  As we scurried away from the lab, we realized that we were 45 minutes late for my pulmonary function test (PFT).  I apologetically approached the reception desk outside of the PFT area because I was so late for this appointment.  The woman behind the desk was so helpful and so nice, she referred us to a patient care rep, Alex, who quickly grabbed our papers and banged on his computer for about five minutes.  He was able to successfully reroute our appointments and somehow we were back on track for the day.  I told him that he was my new hero.  So now we are feeling good for the day.  Things are looking up for us!  After my PFT was completed, I headed up to have my 2-D Echo testing.  The test was going oh so smoothly.  I was laying on the table with my eyes closed, day dreaming the day away when we came to the part of the test that required an IV to be placed in my arm.  In walked a nurse armed with her trusty tourniquet, needles and alcohol swabs only to leave the room calling for help after two missed attempts to start an IV.  Now called into action was the older, wiser nurse on the floor who came into the room with confidence.  Only to leave the room shaking her head as she too missed on her two attempts to start the IV.  At this point it was decided that I should just go ahead and do my next test which was an MRI where an IV would need to be started.  The nurses in the ECHO lab kindly wrote the nurses in MRI a note asking for them to leave the IV in so that they could finish their job after the MRI was completed.  Now this was the part of the day I had been dreading most.  The infamous MRI.  Earlier in the year I had a failed attempt in the MRI machine.  This time, I came armed with two Ativan pills to ensure that the MRI would be a success.  Success it was.  But you should have seen the look on those nurses' faces when I came in with my arms speckled with gauze and band-aids from elbow to wrist.  The MRI nurse confidently looked at my arms, found the vein and started an IV with one stick.  After 2 1/2 hours of laying in the MRI machine having crazy Ativan induced dreams I strutted back up to the echo lab, showing off my new IV for them to use.  As the day wound down, so did the excitement.  We rounded out the day with an uneventful EKG and chest x-ray.  Just remember you never want your nurse that starts your IV to have the motto of "If at first you don't succeed, try and try again."

It has been a long day, but we know that these days are bringing us closer to our ultimate goal.  They are a necessary evil and we are continuing to try to find the humor in our big adventure. 

Sunday, June 2, 2013

The O'Hare Experience

Let me preface this by setting the scene.  This occurred back in January while Ann and I were traveling to Chicago for my initial evaluation.  Therefore, this was not included in the blog, until now.  Get some popcorn and enjoy the show!

Picture:  Ann with two carry-ons strapped to her back, my lap piled high with luggage and a walker anchored to the back of the wheelchair, because we thought it would be a good idea to not check any bags.  We thought this would not only save money, but time.  So, as the plane touched down at O'Hare from Columbus and we exited the plane, we were met by what I would consider the human version of the German Autobon.  As we were weighed down with luggage, weaving our way through "traffic", we must have been a sight for sore eyes because several airport employees asked if they could be of some help.  Thankfully on this encounter we made our way to our hotel shuttle.

Return Trip Experience:  On our return trip to O'Hare, still strapped down with luggage, Ann was nearly arrested going through security for having two water bottles in her purse that were innocently received from the taxi driver.  While Ann was being interrogated for having "hidden" these bottles in her bag, I am being frisked by a rather large TSA agent who disregards the fact that there is a reason I am in a wheelchair.  Then the TSA agent wipes down my chair and I simply ask, "Are you checking it for dirt?".  He does not answer my question, but rather gives me a look that is daring me to make another comment so that he can slap the cuffs on me and take me into the back room.  We successfully make it through security-finally!  As we are trying to put back on our shoes and gather our belongings, traffic continues to whiz by us and I can't help but feel that we are in everyone's way.  Now as we settle in by our assigned gate, which is thankfully only a few feet away, we enjoy an overpriced airport sandwich in special handicap seating.  We are living the life only to find out that our gate has been changed to another gate on the other side of the airport.  As we start in that direction, we encounter a man on a golf cart.  We simply asked him to point out the location of our new gate and he quickly offers us a ride.  He then exits the cart and ushers us to a vehicle that was equipped to transport my wheelchair and all of our belongings.  Because we had arrived so early for our flight, the courteous man decided to take us on an impromptu tour of the airport.  This tour consisted of us weaving in and out of people, honking our horn excessively at people in his path and almost taking out several children and elderly women.  People constantly gave us dirty looks and Ann had to shut her eyes a few times too many.  Somehow we were able to arrive safely at our new gate where we waited patiently as our flight received numerous delays.  Finally, the moment had arrived.  We were so ready to head for home.  With priority boarding we anxiously approached the gangway with our sights on getting home.  While Ann's grip slowly weakened the wheelchair began to gain speed.  As it raced down the ramp, Ann threw her body on the wheelchair to save my life from the impending wall in front of me.  This no doubt brought me much anger and tears for Ann.  Many people walked past us, not sure what to say or do as they had witnessed such a horrific sight.  Finally someone asked if they could help and we were more than happy to allow them.  Needless to say, we didn't talk much as the plane took off.  Me, because I just saw my life flash before my eyes.   Ann, because her worst fears had come to fruition after a week long journey of many near death experiences.

Moral of the Story: Check all baggage and avoid O'Hare at all costs.  We flew into Midway this time and checked our baggage!  We hope you can learn from our mistakes.

Saturday, June 1, 2013

Christmas in June?

I woke up this morning like a kid who could not wait to see what presents Santa left under the tree. For over a month I had been feeling a little worse than what is my normal. But today I actually woke up excited for the day. I love adrenaline.

Today, June 1, is the day Ann and I left for Chicago. We were fortunate to have good weather for our 50 minute flight from Columbus to Chicago. On a side note, this time we flew into Midway because I still wake up in the middle of the night after our experience at O'Hare.

After we arrive in Chicago we thought it would be best to just hail a taxi and have them drive us to our apartment. Let me just say, YOU HAVE TO BE CLINICALLY INSANE TO DRIVE IN CHICAGO. The good news is that we do not need to waste our money on the new Fast and Furious movie because we lived it.

Our apartment is in an older building on a quiet side street in an area called Streeterville.  The building definitely has character. The elevator has a sign on it that says, "3 Person Max or Elevator may stall". Although the elevator did not stall on us, we did not know how to get out of it so we rode it for awhile. Good times. Our room is small but perfect for us.

 Tomorrow Ann and I are planning on resting up and familiarizing ourselves with the area. I cannot begin to explain how grateful I am for this opportunity. None of this would have been possible if we did not have such an amazing family and such amazing friends.

Monday is my first day of testing, so I will keep you posted.

Thanks again to everyone for all the prayers and support. My heart tells me this is where I am supposed to be.



Thank you is sometimes just not enough

I want to thank everyone for all the love and support they have shown me and my family. To say the least, it has been a little overwhelming.

It is this ability to rally around a member of the community that makes our little piece of the world such a great place to live.

All too often we are bombarded with negativity and hatred that we miss all the good deeds being performed.

For everything that our family and friends have done for us, and continue to do, I am not sure that  we could ever repay them. However, I have been brainstorming ways to pay it forward.

Thank you all so much.