04-30-12 Colby

Have you ever realized, quite by accident, how technically inept you are?  Just when I thought I was doing pretty good on Facebook and blogging, I was just shocked when I found a message in an inbox on Facebook that I have never looked at, and the message indicator did not pop up until last week. It was the “Other” inbox.  There it was…a message dated October 2011 from a young man named Colby.  I have never met Colby, but I do know his relatives.  It was the most meaningful, touching, encouraging message and I was just sick that I didn’t get the message when he sent it to me!  He has been reading this blog.  I immediately wrote back trying to explain my delinquency and to tell him how touched I was by his message. What caused that message indicator to suddenly pop up??

I was in Tyler at the time and I was talking to my sister, Jan, about it.  She said something that I wasn’t thinking about, and I instantly knew she was right.  She said maybe I needed that message more right now than I did back in October!  It made me start thinking all about timing.  I have always believed that whatever is best for me, if I have faith, will happen.  But I want it to happen right now!  When I was really sick last year after my stem cell transplant, I remember thinking…when I get past the 100 days, I will be feeling great!  Feeling great after 100 days might happen for some, but was totally unrealistic for me!  Then I moved up my deadline for being well every now and then.  At almost 1 year post transplant, I am now saying maybe 2 years will be right!  I was told at MD Anderson in my survivorship class that it usually takes 1 to 2 years.  I should just have faith that it will happen whenever the time is right and to keep working on wellness.  I still have to be weaned off of prednisone, and then immune suppressant drugs, with no graft vs host disease problems before my donor’s immune system takes off.  Then I will be a new person with the immune system of my donor, a 19 year old young man!  That is totally awesome to me!  My whole point is that I don’t always know what is best for me, and how timing plays such an important factor in every facet of my life.  I have to rely on my motto, “I’m going to fake it until I make it”, and not worry about timing.  There are so many good things happening right now!  Like Colby!  Without even knowing him, I know that he is a very caring, outstanding young man, and that his parents are very, very proud of him.

This blog is to you Colby!  Thank you so very much for your kind words, your understanding and knowledge!  What a blessing you are!  Thank you Colby for being so patient with me, and for encouraging me!  May God bless you!

Holly

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04-25-12 My Stem Cell Hospital Admission in May 2011

Here is the unedited, uncut, original version of a future post of mine on the MD Anderson Cancerwise blog site.  Sometimes the editing process takes out some of my silly comments and content!

My husband and I arrived in Houston a week early so we could get him moved into an apartment and also because I was scheduled for several tests that week at MD Anderson.  One of the most helpful things that happened that week was attending a stem cell pre-admission class.  In this class the nurse told us lots of information about our stay in the hospital….everything from the admission to the dismissal.  It was every informative.  Other appointments that week were a CT scan, anesthesia assessment, transplant coordinator visit, bone marrow biopsy, echocardiogram, subclavian catheter insertion, complete pulmonary function test, social work visit, business office appointment, and appointment with Dr. Hosing, my stem cell transplant Doctor.  I was admitted on May 17, 2011.

In the class I mentioned above, we were told to check in later in the afternoon because that is usually when rooms become available.  My husband’s mother had passed away 4 days earlier, so he was in San Aangelo with his family.  My daughter and granddaughter helped me move into my room.  Before we headed for the hospital we stopped to eat my “last meal”.  I knew I was about to have dietary restrictions! When we  arrived at  admissions, everything was ready and it only took a few minutes.  Going up the elevator to the 11th floor was a very strange feeling….knowing that I was beginning a very important journey and that it would be several weeks before I would be coming back down the elevator!  Plus we had a large suitcase, clothes, and a wheelchair full of pictures and another stuff I needed!

The room was small but nice.  It had 2 chairs, a bedside table with drawers, a built in closet with a desk, and most importantly a window!  The window and my computer were my links to the outside world!  The view outside my window was of St. Luke’s and The Heart Institute.  The helicopter landing pad was right across from my room.  We watched them bring in many patients and also coolers (?) with organs inside.  Memorial Day was the busiest weekend.

Besides the usual pajamas, robes, slippers, and toiletries, I took sweat pants, tee shirts, hoodies, a pair of tennis shoes, my iPod, family pictures, books, my fuzzy blanket, my latest crochet project, my computer, a folding table to set it on, and a folding chair to use with the computer (the chairs already in the room were the reclining type).  Please don’t be afraid to bring all of your favorite things!  Even though the room is every small, you will find a place for your things.  My husband arrived the next day and helped me get everything all set up.

One of the cool programs that I participated in was the M&M exercise program.  On the first or second day you are there, you are asked to walk as fast as you can while they time you and measure distance.  Every day you are encouraged to walk as much as you can.  There are different colored circles cut out of construction paper that you punch into and out of a time clock each time that you walk so that they can keep track of the time you spend walking.  You get to tape these colorful paper M&Ms on you door and every week they are picked up and prizes are given out.  Dn’t laugh…this is a big deal!  I won a bandana, and on the last day before my dismissal I received an M&M tee shirt.  They ordered an orange tee shirt just for me since it was my favorite color!  This program gets to use the M&M logos and colors, and it’s purpose is to discover the positive effect of exercise on stem cell transplant patients.

The staff was amazing!  In a future post I will write about the staff, treatment, transplant, and events leading up to my dismissal.  The most important and awesome thing I want to stress now is that I was always treated with the utmost kindness and respect which makes everything so much easier to bear!  MD Anderson IS number one!

04-21-12 Day 333

Day 333…this doesn’t seem possible!  I will celebrate my 1st stem cell transplant birthday in 32 days!  This also means that I will be able to find out if my donor wants to remain anonymous or agree to meet me!  I would love to meet my donor whom I love so very much (!), and I’m praying that will happen.  Wherever Wade and I would have to go, we will be there!  On the other hand, I am also praying that if he wishes to remain anonymous, I will graciously accept his decision.  The countdown is on!

Meanwhile, I just finished my 8th round of Vidaza yesterday.  Only 4 more rounds to go.  I have been having bouts of extreme tiredness and extra swelling of my leg with deep vein thrombosis.  I thought this happened with my leg the last 2 rounds, but wasn’t quite sure.  Now I don’t think it is a coincidence!  Overall I think I am improving.  My liver function tests have improved, and other bits and pieces of GVHD seem to be disappearing.  I have so much to celebrate and be thankful for!

I will be all week in Tyler with my parents and sister and brother-in-law.  I’m so excited!

“In order to get to the other shore, you’ve got to lose sight of this one.”  Steven Tyler   

I’m dog paddling fast and not looking back!  Have a great weekend!  Holly

04-12-12 Feeling The Love In St. Louis

On a recent quick trip to St. Louis, I had the opportunity to shop at a boutique next to our hotel – Blue Moon Activewear.  (It is actually in Clayton, Missouri.  St. Louis is made up of a lot of little towns).  Cheri has the coolest store…all kinds of workout clothing, and also comfortable active wear that is very fashionable.  For instance, I got a pair of really cute jeans that are actually yoga pants.  How cool is that?  While I was trying on, I admired the artwork on the walls of the dressing rooms and decided to snap a pic.  There were song lyrics from Boz Scaggs in one room and Crosby and Nash in the other.  I instantly knew Cheri is a music lover!  She caught me taking the pictures so we started to visit, which led to my blog, which led to my transplant journey.  Cheri is in the Bone Marrow Registry and is very much wanting to be a donor!  She said something that really touched me, (and yes, made me happy cry!).  Speaking of my donor she said, “He’s going to Heaven”.  I love that!  It all just brings to mind how many amazing people I have met throughout my journey in so many different places.  And how much encouragement and HOPE are generously given to me by Cheri and so many others!  If you are in St. Louis, you will love shopping at Blue Moon Activewear.  And be sure to go next door to Extra Virgin, An Olive Explosion where you will find amazing olive oils and balsamic vinegars from around the world and a tasting bar to try them all.  Also an olive bar, pastas, condiments, cookbooks, serve ware, and all kinds of cool stuff!  I bought an olive oil that is produced very near where my friend Rosanna lives in Catania, Italy. She has a great blog –  rap55.wordpress.com.  Check it out!

To become a stem cell donor, go to www.marrow.org for information.  You might be able to save someone’s life, just like my donor saved mine!

Love your soul and it will love your body…which will love your yoga jeans.”  This is printed on the tag of my yoga jeans.

 

 

 

 

04-04-12

Hello Everyone!  I’ve had the dead head for a while and haven’t felt creative enough to blog, but I’m getting my mojo back now.  Yay!  I am not one of those that feels the need to blog everyday, especially when I don’t have anything interesting to say!  Here’s what has been going on.  I had my appointments at MD Anderson last month and learned that I have graft vs host in my gum tissue and possibly in my liver.  The only way to determine if my liver problem is graft vs host would be to have a needle biopsy, neither my team nor myself is interested in that at this point.  Instead they are treating me as if it is graft vs host, so it is back on the steroids again, “liver pills”, and prescription mouthwash for my mouth problems.  This news about the liver was a big downer for me.  However I do have weekly blood draws to check my liver function and it’s at least not getting worse – sometimes it is improved.  I will go back in a week to be checked again.  At the same time I had a flare up with the deep vein thrombosis, and a round of chemo with side effects that were worse than usual.  Yes, I was about to throw myself a pitty party!  Things are definitely much better now…. I am very thankful!

The fun things about my trip to Houston were the two video interviews I had while I was there.  One for MD Anderson’s website for new patients, and the other a documentary on The Rotary House.  I was soooo nervous, but Jo was awesome at the interview process, putting me completely at ease.  And so was James, the videographer.  They were awesome!  When I get the DVD for the MDA piece I will post it here.  The Rotary House piece will be ready later in the summer.

Here is the link for my last MD Anderson blog post:       http://mdanderson.org/cancerwise      You can then scroll down to my post or search Holly Easley in the search bar.

Yesterday was Wade’s birthday, one of those ending in “0”.  We had a great day together!  I love that man!  We are in Saint Louis while he is attending a short business meeting.  We will go home tomorrow.

Thought for today:  (This one is for me!)  “One of the things I learned the hard way was that it doesn’t pay to get discouraged.  Keeping busy and making optimism a way of life can restore your faith in yourself.”  Lucille Ball