It's Not a Sprint

Hi all
After my last post, I was struck by the resolve that my children are showing through all this and wanted to write a little more.  The chemo sometimes makes my head spin and even just turning my neck in bed makes me dizzy.  And it (and certainly some of the other drugs I’m taking) also makes me emotionally unstable.  Whatever.  All I know is sometimes I’ll be sitting just watching TV and I’ll just have an emotional low.  It’s like sitting in the ocean and being surprised when waves crash over your head.  You know they are there, and are headed your way, but for some reason, it’s still unexpected.  And that’s not me.  Most folks who know me know I’m pretty stable. Monday was interesting though and after some reflection, I thought I should be mindful of what was happening and share it.  It was raining outside, very heavily.  I was watching television in bed while the rest of the family was doing other things in other areas of the house; nothing out of the ordinary lately.  All of a sudden, I felt an emotional low starting to loom over me; a slow moving wave with a high crest that I could almost physically observe out of the dreary window.  Most of the time, I can just deal with it, recognize it for a low caused by medicine and fatigue and distract myself with the internet, books or anything else and it will pass.  But this time, even though my family was home, I realized I just needed someone close to me – a family member within an arm’s length.  Jenn was watching Jack and Ben was in his room. I asked Ben to come in and keep me company.  I had been in bed a long time and with the rain, and the drugs, compounded with the looming wave, I needed my son.  And without complaint, he came.  He sat in bed with me, just being with me.  At that moment, he didn’t understand how much I needed him but that did not matter.  He certainly doesn’t understand the full ramifications of what may happen with this cancer, but right now, he doesn’t have to.  I imagine he does understand at some basic level that his daddy needs him right now as much as he needs his daddy.  And that is enough.  I hope that is one of the positive lessons he takes away from this.  That cheering up a really sick dad, while it shouldn’t be a part of any 6 year old’s life, is the reality right now.  And he’s good at it.  He’s empathetic, considerate, cheerful, and kind and I am so proud of him.  He has been busy making crafts for me including a UFO with alien.  And he’s made me a personal notebook with his own paper that I can draw or write in with crayons and pencils attached by a Ziploc bag.  When he brings me something he has created, I can see the pride in his eyes that indicates how much thought he has put into his version of what will make dad a little happier.  Seeing that look warms my heart. He keeps me company through this and I will be forever appreciative.  I look at him, and Jack and Jenn and can’t help but be overwhelmed with their presence through this.  I watch them play; I smile and laugh with them, then realize how much this disease is affecting me as I lose my bearings because I’m dizzy or tired.  But they keep me company, and sit in bed with me and keep the house alive with child’s laughter and innocence. And that gives me strength, courage, and motivation to keep going and not give up.  This is hard, but the boys are making it just a little easier.  And we are so fortunate to have that support system within an arm’s reach.

My latest prosthetic appointment was yesterday.  Lately, we have been in kind of a stagnant mode regarding the prosthetic.  Through all this, my being autonomously mobile is the one area that gives us tangible hope and a sense of progress so getting back on track has been at the forefront of our minds.  I had been waiting for a small part of my incision to completely close until I could get fitted for my silicon liner.  The chemo had been slowing that process.  We had last seen our awesome prosthetist prior to Christmas and he wanted to wait longer to fit me for the liner until the incision had more time to heal.  By yesterday, the incision, while significantly much better than our first visit, still had not completely closed.  There was (still is) a minute amount of drainage.  So before the visit, we were anxious that we would have to wait even longer for prosthetic progress to continue.  To add to the uneasiness, we had had to shift our appointment once already and certainly did not want to continue just showing up and having the prosthetist tell us to keep coming back!  We drove to our appointment (30 min drive to Nashville) and waited for our prosthetist.  Once he came in, I rehashed what our last appointment had been, and he began the examination of my wound.  He looked, pushed, squeezed, rubbed, and worked Short Round.  Much to my chagrin, a small amount of discharge appeared in the one messy spot…grrr… Fortunately, it wasn’t enough to warrant another visit.  He was satisfied that it was a small amount and he would go ahead and fit me for my liner!  In my head I was doing backflips!  So he went and got the silicon liner, cut it to fit, and proceeded to work it onto Short Round.  There was a little bit of pain, but I was welcoming of it!  Once it was on, he had me stand and he wrapped a fiberglass cast around the liner, which will be used to cast the actual socket…more signs of mobile progress!  I’ll wear the liner for two weeks and we’ll go back to get the socket fitted.  That visit may also include attachment of the actual leg portion. To top off the exciting visit, I held the actual leg in my hand (see photos) – a small measure of forward motion!  We are just ecstatic to get things stepping out on the leg front!

Using suction, the liner holds the socket in place once the leg is attached. The white rings at the bottom help create a more secure fit for the socket.

We’re 99% sure we are getting the Genium over the C-Leg. Until it’s affixed to me, I’m not going to jinx it!

As always, thanks for reading everyone!  Your post responses continue to inspire and encourage us.  They are consistently a part of our daily conversations.  Please continue keeping us in your prayers and thoughts.  Until the next update, talk to you later!
Hunter