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I am waiting to see if the UT SouthWestern SPA will emerge from the dark ages, disregarding the statistical outdated facts and figures that don't apply to many of the current cancer patients that they are seeing who may or may not be eligible for a lung transplant.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.

Who the Hell re-engineered the Microwave

Blew up my oatmeal (eating healthy counting calories) in the industrial strength microwave at work, how many engineers does it take to heat up oatmeal ??? they don't eat oatmeal just tada chips M&M's and MoutainDew

Getting ready for my lab work Saturday in anticipation of the oncology visit on Monday (I will give them my right hand this weekend and my left hand on Monday for the blood draw I will give for my transplant doc visit)

Finally set up an apt. w/ an endocrinologist here the last time I saw one I was at Stanford. Will probe the problem about the effects this prednisone is having on the body (high sugars, and gynecomastia)

Will try the mask (CPAP) out tonight I don’t like it at all and I see where it can cause its users to become dependent on it.

Tour of texas

I ain’t gona ask no stinking directions, I studied the map and memorized three routes to get to our destination (shortest route, quickest route, and the least traveled route) like I always do and have always done. Our destination moved, seems like NRH2O has moved and they forgot to tell me and everyone else in N. Texas about the move, I was right they were wrong. Oh well we didn’t get to play in the water yesterday, but it is probably for the best as there is some virus in the public water parks in the DFW area right now. Since the water park moved we toured North Texas yesterday or until I could not take the nagging and seat kicking anymore (ice cream solves all problems…).

I am out of the dog house since it is not my fault that NRH2O moved, we will take another tour of Texas and hopefully find the park in August when Dora the Explorer is there.

It is Hanna Montana night tonight in 3D, I can’t seem to get these Hanna Montana songs out of my head, and I really shouldn’t know who the Johnas Brothers are …

Still feeling a little scratchy in the throat I will have to see what the results of the nasal wash are that I had done yesterday.

Still can't do the mask

I still can't wear the sleep mask, I might try again in a few days, right now I have to figure out if I am coming down with something as my throat fills scratchy (I will have to go to my stash of antibiotics). Lately I have been coughing up a little bit more crude than usual I have to go to the lab and produce a nasal wash specimen so we can find out what is going on with the throat and stuff I am coughing up.

You know I am just going to have to wear my mask MORE even though kids say the darnedest things and ADULTS say the DUMBEST things.

The more push-up I do the bigger my chest gets, which under normal circumstances would be a good thing but with all the scar tissue and the masses on both chest it speaks to body image conscious problems. I have figured out a way to surpass my goals of 15 miles per week and 500 push-ups I just walk a mile and a half 3 times per week at lunch and do 100 push-ups each day I walk at lunch and my goal will be easily reached along with the night time work outs.

Pink Eye Again

What the Heck. Pink Eye has struck again at the day care and I am scared as heck to drop the girls off or even pick them up for that matter. Where is my Has mat suit. I have started carrying some wipes and a container of waterless foaming soap into the daycare with me everyone has to wash their hands before getting in the truck to go home, I am also schooling the girls on the 2 and a half minute rule. Daddy has 2 and a half minutes that he is willing to stay in the daycare so get your stuff and lets go home to stay out of the Spa (hospital) I have to drop off and pick the girls up from daycare using the drive by technique.

This is a bad summer for all daycare facilities as we had a very Pink Eye, Strep throat and other things, I hope we get some cold weather this year.

Pins and needles in the morning

Well I have more blood work in the morn, I think I will let them take it out of my left hand tommorrow. It seems that one of the levels created by one of the immunosupresant drugs is low, so I have had to increase my dosage of that pill to incresae my suppression levels.

On a brighter note, I am getting my workouts in 2.5 miles tonight (mostly walking with a little jogging VERY LITTLE JOGGING, I think I will set a goal to get in 15 miles a week on the track and about 500 angled push-ups per week when I am working out outside.

Bo is on they mend best news of the day

Back Again in Fort Worth

Back in Fort Worth, after doing downtown San Antiono and a brief stop in Austin to visit relatives and see my old stomping grounds (house, junior high, and high school).sleep. I am happy that I was able to keep up with the family for this trip and most importantly I stayed out of the hospital. I will start wearing the the CPAP machine tonight (below is a picture I took with my cell phone while going through my sleep study, this thing is unfomortable at best).

Help
Help again

I made it

I am not too tired from the travel, looks like I am on the road back, best of all I stayed out of the Spa (hospital).

Travel Day

Back in Fort Worth, after doing downtown San Antiono and a brief stop in Austin to visit relatives and see my old stomping grounds (house, junior high, and high school).

Children's museum pictures

Pictures from SeaWorld

A few pictures that I would normally have e-mail to my dad then other family members, since he is no longer with us I will just post some of them here. The vacation pictures are a first for us as this is the first family vacation we took, keep in mind that Ravyn has only know a sick cancer stricken dad since she was 3weeks old, and before my diagnosis I was in school. Oh well here are the pics.........

The girls and me winding down after a long day at the park with lots of sun, fun, and WALKING
Dinner with Shamu, give me cake mama
Let there be cake, Mmmm this sugar high can't be beat
Wazzzup! How u doing!

With gas prices going up, up and away this was the best way to get around
A new family member
Brush your teeth and rinse
Waiting on the fireworks, before we get rained on
Eating fish, watching fish (killer whales)

Long Day at The Park

Today was a long day but I made it through today like I made it through yesterday. Sea World you can not beat me.

Today we ate Shamu, we ate whale (well) I have really been craving some nice grilled seafood, with summer comes lots of salads for me so I grill fish and put in/on my salad when it is to hot; speaking of salad I had a nice salad today at sea world, and yes fish did come with the salad, what do you expect it is sea world, .... don't dial the last digit to your animal rights group, I shouldn't say fish we had Shamu..... not to eat but to eat with us as part of the dine with Shamu package we participated in.

My feet are tired but I made it through the day and went on every ride that a heart / respiratory patient should stay away from.

The Stars at night Shine BIG & Bright

You know the song, you heard it on PeeWee's Big Adventure... Narf...

I am almost back, one small trip for mankind, a semi-long drive for a transplant / cancer survivor. I drove the nearly 300 miles from Fort Worth to San Antonio by myself, welcome back stamina, I have missed you. The girls handled the ride well, and Rhonda did too, only giving me directions once or twice or maybe three times.... directions I don't need no stinking directions I have enough gas to drive for hours eventually we will find the hotel.

Took the girls swimming and there was enough chlorine in the pool to bleach your clothes and burn your eyes; the girls are now blond (just kidding).

Sea world or bust tomorrow gotta rest up so I can walk the park, enjoy the rides, eat, and carry the girls or push the wagon/stroller after the heat and excitement beat them down.

Bo got a new Apartment at the Spa

Bo is still in the hospital but out of the ICU. Progress is great

On the fourth I will challenge myself as we are going on a family vacation to SeaWorld, I hope I can handle the crowds, heat, and I might jump in the water with the fish.

Funny video about the hate naturally bald people have for cancer patients.
http://www.funnyordie.com/videos/d346d33656

Tag Team

My wife is home, normalcy will soon follow, we will wear clean clothes no more hole is our socks, our hair will be done, I will shave, oh yea and we will have cooked food (no more raw meat survival of the fittest) this was a ha ha joke please don't report any of the above fiction to Texas CPS as they have meet their mistake quote for the year.

I made it staying alive, no hospital, knock on wood, my throat hurts but the girls and I survived her long business trip.