Thursday, May 20, 2010

Lifestyle as we know it now

Alright, as I sit here in my chemo chair for my weekly intake of the chosen poison, I have reread a few of my recent posts and they all sound the same. Problem is, they are-things turned south beginning of last week and really not much else to report so thought I might try give some insight to how the general lifestyle has been effected for something different.

As you all know, we don't like radiation and there is no indication it will get any better, or easier, until it is pau, and even then, weeks of recovery. Hopefully however, it doesn't get any worse and we keep trying new drugs to assist me along. The newest challenge over and above the pain that seems to be here for a bit is communication. For now, speaking simply consists of a series of grunts and groans and in dire necessity, some form of mumbling. In person, I can point or write a note, but talking with Lisa when on the phone is a difficult chore for her I'm sure. That is a big bimmer but again, trying a new medicine tonight to see if they help the mouth sores that have caused the swelling of the tongue creating this dilemma. Crossing my fingures.

It also has drastically effected consumption of foods and fluids as Ive mentioned repeatedly. The weight keeps dropping and today I find myself down again to 210-a number that is light even for me and starting to concern the "professionals." No significant change in blood work to indicate malnutrition, but they see a trend and it is hard to get things down no doubt-Herein lies the biggest lifestyle adjustment I must work with -EATING. I know everyone around me frustrated as well as want to help but its not that simple and I tend to be the loner when it comes time to accomplish this task. It's just not fun nor anything anyone needs to witness to be honest. Case in point, it was my Aunts birthday the other night and she came over for dinner, something I no longer participate in formally. I did decide at some point when they were outside enjoying that I needed to get something down outside of the now daily Ensure ritual. This usually involves some kind of soup or liquid base that I add anything too I can to inject nutrients and it is not a pretty sight. I literally have to gag down whatever it is and hope the throat allows it-sometime it doesn't and therefore can be messy. Certainly NOTHING I want an audience for, nor anything I enjoy as it is painful and the flavor profiles I get to deal with are terrible. Believe me folks, nothing can be done except that I get down whatever and as much as I can, when I can and I feel terrible as I know peple trying to help. In this case, Mom came in to try and help but she simply can't and I tend to scurry away like a caveman as again, not into the audience. I feel bad as I know she feeling helpless-Lisa has had a bout or two with this too and it sucks but some things I jsut need to do alone-Sorry.

Further, along these lines, Ive even come to the realization that showers are a great way to hydrate so do enjoy them. . I can stand in the shower and take in whatever water I can and haven't a worry in the world if it stays down or not-there is always more and i can take my time drinking it in-LOL Again, lifestyle changes.

Attire also a bit of an issue as I have developed what I call my radiation lei. A perfect match to where a lei would lie around your shoulders except in my case, that coloring and texture are not flowers but actual burn marks. I actively treat with aloe as is recommended but they have become pretty severe burns, blistering and scabbing.

Let's see. what else???? I've mentioned the super thick saliva, again, keeping me laying low in private a bit here instead of showcasing myself as a 210lb drooling, spechless idiot. The Uncle Fester look that seems to be on standby with these individual blond hairs coming in sporadically is not my best look and.....Oh yeah-the fatigue has set in. This actually has a pleasant outcome. NAPS-not something I did regularly but they are increasingly necessary and I must say-I am already looking forward to getting out of this chair, going to the zapologist for number 19, a swing by the office and then....ahhhhh... this afernoons nap.

Lifestyle changes-guess we knew they were coming!


  1. luv u honey.....that's all I have to say...

  2. Hang in there Jeff. Life is good! Even if it sucks right now, we all have so much to be grateful for. Try to spend as many moments as possible counting your blessings and to experience the love and the beauty that surrounds you. That is how I survived the pain and agony of my own close brush with death.