Lymphodema becomes a reality

This has been a tough week – I had my first flare up and all I can say is lymphedema blows. I went to bed Sunday night and my arm was fine, Monday morning it was 4 times the normal size and throbbing.  Don’t get me wrong, I’ll take it over cancer any day.  But having lymphedema does suck as it interferes with everything I do, everyday.  I’m not able to lift things and some movements are difficult.  I’m wearing a compression sleeve with a pressure gradient from my fingers to my shoulder to help aid in channeling the fluid out of my arm.  Only time will tell if I can push the fluid out of my arm or if the compression sleeve will be a permanent addition to my wardrobe.

Why do I have this?  I had the first and second tier lymph nodes removed during my surgery and the remaining nodes and channels were damaged by the proton therapy. So my right arm has no healthy channel for filtering and dispersing the fluid that naturally occurs and moves through my arm to the rest of my body.  Lymphedema can occur at any time for any reason and there are few resources for people who live with this condition.

I am very lucky that this does not affect my dominate arm.  That would make simple tasks even harder.  But that’s enough of that!

This weekend we are spending time with family and watching Tribe baseball.

Have a salad this weekend

It’s been a week of flipping back and forth between the Indians and the Columbus Blue Jackets.  Exciting to see the Jackets in the playoffs, sad it was short lived. 

But anyway, Johnny’s returned to himself after his latest chemo infusion with the exception of his right hand.  He woke up in pain Wednesday night.  His hand was red and swollen.  It could be a case of cellulitis, a touch of gout, or something else.  We’re watching closely for now, wrapping his hand and icing. By Friday morning it was better. But still not normal.

We’re also watching his CEA (Carcinoembryonic antigen) number.  It’s a simple blood test that is ordered with along with several others when Johnny goes to the Zangmeister Center for treatment.  Johnny’s has risen a bit to 3.3 from 3. Fluctuations of 0.8 are fully within the error-bars of the test.  He’s scheduled for another CT-scan in May. So it goes back to the standard scientific phrase that “junk data is worse than no data.”  It’s all about trending.  Our green smoothies, juices and salads are coming out in full force.  I have another liver enzyme test scheduled for mid-May.  I need my numbers to return to the normal range so I can skip receiving a CT-scan of my own.

Aside from chemo side effects Johnny feels great, his appetite and weight are good – all clinical signs that his treatment is working.  Thanks for all the prayers.

Enjoy the Weekend!