Soccer, picnic and vomit

This weekend is a holiday weekend but we won’t be able to get in rest, I am just happy that I am not kicking off this football season in the spa (hospital), its hard to find or sneak in hot wings and beer (root beer) when your on the heart lung floor…. It can be done though…. It is not mission impossible you do deserve some comfort while uncomfortable in the spa…just tell them that the orange stains on your sheets and gown are IV fluid that leaked out from one of your IV bags…

Friday we went to watch TCU play Xavier in soccer, I am sure it was an exciting game Rhonda and I wanted Raegan and Ravyn to see some positive women’s sports. Our family time at the soccer game lasted longer than our Texas Rangers game (viewed after the transplant softball game May 2008, we didn’t even make it to the first inning heck we didn’t even make it to the national anthem the girls were hot and needed a nap) I digress… we saw one score by TCU all told about 45 seconds of soccer and 4 minutes of halftime before the flood gates opened and Ravyn threw up on the people in front of us (I told y’all to sit down) then she threw up on Mommy, threw up on Raegan, threw up on the people on the stairs (clear a path, move) I slight stomach virus… she is fine.

Today we had our church picnic and Ravyn was fine playing like nothing happened yesterday, she and Raegan enjoyed the water bounce house I will have to post pics later, Rhonda and I enjoyed having grown folks talk as it was our first time being able to go to the church picnic since 2005.

I was supposed to get another A1C blood test today but they were closed for the holidays so I will get it on Tuesday and send it off to my medical Posey

I feel less sick, less congested today

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.

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.

More Drugs....

Normal day, I just got the all clear from my nasal wash cultures so I don’t have any virus or there was nothing that showed up in the test that the transplant doctors performed on yesterday.

I visited an endocrinologist on yesterday to discuss some of the changes I felt needed to be addressed and to also look into the steroid diabetes most of us transplant patients get. He is of the opinion that many of the side effects that I discussed were due to the hard chemo that I received more than two years ago. It will take years to HOPEFULLY recover from that RAT POISION. I was given a new drug to counteract some of the effects that are going on, he said that the chemo messed up my hormones my response was “What chu talkin’ bout Willis, pouting) they want me to take a hormone med (Testosterone pill/ or shoot; I will take the pill for $200 Alex the shot is self given with a LARGE gauge needle and they hurt like HELL take my word for it)… I am now taking Testosterone and steroids and lifting weight (can you say angry man in the gym, but I have a doctor’s note so it is okay)

Still waiting for the results of my A1C test from Friday.

I think I am getting sick

I feel like I am coming down with something I have alot of nasal congestion and drainage (clear), no fever, no shortness of breath, weight is steady, and no releasing of fluid / matter from either end, constant cough, headache.... self diagnosis allergies or some sort of a summer cold.... it is time to pop some new pills after a nasal was.

Your Fired???

Friday: didn't do much stayed alive, the girls went to daycare via the car the bike stayed in the garage today (until) I get in better shape. Had a physical today to finish off the final test to satisfy the annual transplant requirements that I didn't satisfy in April of this year. I like this doc. but he might get papers (i.e. fired) reflecting back on the visit I know I make doctors nervous due to my condition ..... but they didn't even take my temp. during the physical.... that is standard even on me. They did do some blood work so I will get to find out the results of my A1C soon (a 3 month snapshot of my blood sugar levels).


Saturday: Ran some sprints / maybe jogged about 10 100's, back pedaling 2 of them ran a few hills/ bumps in the earth (Texas is flat), some push-ups topped off the workout

Sunday: more running and soccer with the girls, Raegan (the oldest) is very competitive and quick tempered, Ravyn listens well and is stubborn.... excellent traits, I like

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.

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)

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.

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.

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.

School Shopin' shopin' shopin'..

Today was a lazy day school shopping, boy I tell you first time school parents be shoppin' be shoppin' shoppin' shoppin'....I am glad I kind of had a list my wife left with me or else Raegan might have been wearing the wrong colors that don't satisfy the school uniform colors. We got in a bunch of soccer today at the park, along with swinging and sliding too, and yes I DID NOT get stuck in the LITTLE tunnel slide this time.

Wanted to take the girls to the zoo but the fact that they didn't take a nap put that idea to rest, I am recovering but not stupid, I can't carry / drag both of them through the zoo they are too heavy combined and I would be out of breath


church tomorrow, I wonder if it would be okay for them to wear winter hat during service as I am still working on my hair doing skills, when my fat fingers don't get in the way

Friday Funday

TGIF today will be a fun day. I have a date with Raegan and Ravyn at the circus tonight lots of candy, popcorn, cotton candy, and other stuff I should not be eating (Don't expect me to take my sugars tonight). While my wife is away the bachelor by-laws rule the house and its occupants.

I have nothing to report on the cancer side, or the transplant side of the house; the only thing worth noting is that my tacrelimus levels are low. I have been using new CPAP machine and don't like it, pictures will be posted soon.

Oh yea Bo is out of the ICU he is giving a new set of nurses hell, good going.

It takes time to heal

Bachelor life begins on Monday for the next two weeks, as my wife will be traveling for work. This time last year I wouldn't even think about being left alone with the girls for longer than a few hours.

They tried to KILL Me

8/8/08 is not all that lucky R cubed tried to kill me; I bought a couple of bikes on Craigslist to help get me back in shape faster, I also bought a little tikes trailer to pull the girls along. In short we looked like a hot mess the girls sitting in the back eating pop-tarts grinning, laughing, singing, and weighing me down. I was dog tired after riding the mile from the house to the daycare I just pushed them in the door and grabbed a handful of paper towels to dry my dripping sweat (keep in mind this was just before 8 AM so it was still cool outside, relatively cool for Texas). On the way back I was like the little (out of shape) engine that could, I kept saying I think I can I think I can so I wouldn't stop, if I stopped pedaling I would have just laid in the grass somewhere for an hour or so. I finally got home and feel out Rhonda was home and had water, a towel, and a wet sponge waiting on me (is this the Tour De France????) it took me two hours to recover my legs were gone (like Jell-O

Going to visit the sleep doctors and tell them I hate the CPAP and I want a different mask and some more options beside the mask.

My blood work was a disaster as I was outside of the 12 hour limit between doses of one of my meds.

The Spa treatment

At the Doctors again, the UT SouthWestern Spa. driving was murder drove to dallas w/ the AC off but my return trip will be wind aided (w/ AC) it should be cool today though only 105 compared to the 111 that my truck thermometer registered yesterday.


The oncology doctors gave me the all clear today based on my CT scans (with contrast) and my chest X-Rays. My lungs are all clear still (Note to transplant centers that denied taking on my case MY LUNGS ARE STILL CLEAR EDIT YOUR WHITE PAPERS I still carry a chip on my shoulder. My next CT will be in three months and the cancer side will have to battle with the transplant side regarding the use of contrast.

The transplant doctors were pleased with my progress my spirometry was off by 0.003 percent maybe it is because they took so much blood 8 tubes today out of my hand (my hands have less scar tissue than my arms)

Breakfast with Ronald

blood work for the oncology side on yesterday in preparation for my Monday visit to the UT SW Spa, which will be a long day cancer doctors, lung transplant doctors, and I will hunt down the newest team member an endocrinologist just to find out where his office is located.


We had breakfast this morning at the Golden Arches, per Raegan’s request, and the urging of Rhonda and Ravyn, I did not win the popular vote on this and we were all at Ronald’s house (McDonalds) by 9:30, grumble grumble I’d rather eat at home less chance of getting sick.