Back to Normal

Back to normal, looks like the girls and I will have to eat in the kitchen sitting in chair, using silverware, napkins, manner and all the thing a civilized society demands of us, Rhonda returns today.

I am waiting to see if the UT SouthWestern SPA will emerge from the dark ages, disregarding the statistical outdated facts and figures that don't apply to many of the current cancer patients that they are seeing who may or may not be eligible for a lung transplant. This data they (many of the transplant centers of excellence) use to help base their transplant decision is irrelevant since the medicines have changed, the equipment has changed, the patients are receiving better care for their cancer before transplant, and the patients are strong and healthy they just have two bad lungs. Their are 4 BAC patients (including myself) that I known of that have been transplanted get your data points from us and our progress...... better yet allow us to speak to you oncology or transplant review boards so they can connect a face, a family, a community to the medical notes on the CASE (patient) seeking the life extending procedure known as transplant (bi-lateral lung transplant to be exact). Sorry on my soapbox when change is resisted... you know if the patient and his or her family are will to take a risk then take a risk don't throw in the towel....

On a brighter note The Johnson Family "Gump Family" need a shoe contract b/c Bo is walking, walking, walking...

Soccer tonight with the girls, then ride my bike after they have gone to bed and run some more, I might take them to daycare in the morn. on the bike but we shall see on that one (They are trying to kill me)

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ChickenPox

I ain't gona make it, now there is a warning at the day care as one of the babies has ChickenPox, the child is an infant so he/she is not in class with Raegan or Ravyn but I still ain't gona make it. The daycare is taking all my money and also putting me in the grave alot sooner than I would like to go. I thought in Texas you automatically get vacicinated for Chicken Pox before you leave the hospital at birth. I am going to have to come up with an alternative way of dropping the girls off and picking them up from daycare because going in and out of there is putting my health in jepordy.

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Rainy Monday

Yesterday started off pretty lazy for the girls and I, we didn't do much until the afternoon when they think they were having fun playing soccer with daddy, but in actuality they were running sprints, kicking the ball and getting tired so they will go right to sleep when they get in the bed.

As I was running up and down the soccer field yesterday I couldn't help but think how bad of shape I was in this time last year; I was just barely able to pick up my youngest daughter (who at the time was 1 and a half years old) and I couldn't spring / jog at all; not to mention that I was hospitalized (my first stay at the UT Southwestern Spa). What a difference a year makes.....Time heals all wounds.

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My feet hurt

My feet still are bothered by the neuropathy from the (chemo) ratt poison I once endured.

My feet swell after a workout and after a jog, or soccer session with the girls.

I feel I have big shoes to fill, I have a price to pay for the gifts given to me, I have to pay it forward for those that will unfortunately travel the dirty roads I have driven. Speaking of feet I had to get some new shoes the other day.

Regular feet can't be affected by irregular shoes.

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No news Tuesday

Nothing cancer wise to report today, nothing to report transplant wise either. No news is good news.

I found some hills to run today, and I don't have to go to TCU to run them either (TCU and SMU are after all rivals so Pony Up, and Ram Pride (WSSU)). Got some more soccer balls so that after we get past this 40 days and 40 nights of rain the Girls and I will get out to the field and play some soccer.

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School Daze, First week of school

We are wrapping up the first week of kindergarten today. The first week of school is basically a rollercoaster of emotions for me and the family as well. Watching Raegan go off to school marks a milestone I shouldn?t have reached so medical community cut and paste that and insert it into your revised white papers. The rollercoaster for me goes from the prideful high to the scary lows in this case the lows would be the geometrically increasing exposure to bugs, viruses, infections, and other health aliments that all school age children seem to pickup and bring home. My goal, the goal of any transplant patients is to stay out not just because the spa is an unpleasantly frustrating place, but it is expensive because of the medical bills and in my case it gives my wife a chance to shop (shop, shop, shop ?Women be shopping?, Chris Rock) with out hearing any objection to her purchase from me.

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Gimp legs

Groggy today I broke down and took the sleep meds the ones I refuse to take anymore since I really could use some sleep (REM / deep sleep), I have not been using the CPAP machine even though I have a new mask (not the full face fighter jet mask) the nasal mask won?t work right now with all the nasal congestion that I have right now. The only problem with taking the sleep medicine if you don?t get to lay horizontal for at least 8 consecutive hours your legs won?t be under you for a few hours when you get up and try to function in the morning.

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