The Home going for Bo Johnson

Bo Johnson has his home going service today. A celebration of his life, loves and accomplishments with family, friends, colleagues, fellow advocates, medical professionals, and anyone with a pulse. Bo and his two leading ladies have had and will continue to affect lung cancer survivability for years to come.

"I know, I gotta go, I gotta go, and I got one last thing and I said it before, and I want to say it again. Cancer can take away all my physical abilities. It cannot touch my mind, it cannot touch my heart and it cannot touch my soul. And those three things are going to carry on forever."

March 4, 1993, Jim Valvano ESPY Speech

Out of the closet

It seems that Bryant Gumbel has come out of the closet to reveal that he too is a cancer survivor and is battling LC (lung cancer) none the less. I wish him well in his battle and applaud his courage in making it public knowledge. There are several internal battles one must first deal with when facing such a horrific diagnosis. You have your classic anger, denial, confusion, seclusion, clandestine behaviors, openness, anger coupled with the "never give up" attitude.... Again I wish him well in his fight.

I am disappointed that the American Cancer Society for the irresponsible, insensitive statement they made about lung cancer prevention. They just feed the beast with such careless statements like the one they made in reference to lung cancer. The stigma is the beast, it is the ignorance associates smoking with cancer IT IS IRRELEVANT WHETHER OR NOT A PERSON SMOKED NO ONE DESERVES CANCER, NO ONE DESERVES LUNG CANCER SO STOP ASKING, STOP LOOKING FOR A REASON TO BLAME, START EMPATHIZING WITH YOUR FATHER, MOTHER, BROTHER, SISTER, FRIEND, COUSIN, TEACHER, PREACHER..... IN SHORT CANCER IS AN EVERYMAN EPIDEMIC IF YOU DON'T THINK SO READ MY STORY OR FOLLOW THE LINKS I HAVE HERE... YOUR IGNORANCE WILL BE ERASED


CNN.com "Bryant Gumbel reveals lung cancer surgery" December 8, 2009

Lung cancer is the leading cause of cancer death for both men and women in the United States, but it's also the most preventable, according to the American Cancer Society. Gumbel said he and his doctor are hoping his treatment is complete.

Peaceful Journey (Bo)

Brother Bo has gone on to heaven, he no longer has to struggle with the ills of cancer and the highs and lows of being a transplant recipient. He was with his two favorite ladies to the end; may he rest in peace, and pray that Christi and Addi find peace and comfort in the legacy and Impact Bo (BJ) has had on us all. BOvsBAC

Bad News

I just read Bo's most recent blog post, the was so courageously written by his wife to keep us all informed about his progress. If you get a chance read it and leave a message for CJ, BJ, AJ (Christie, Bo, Addi) cancer is a long and difficult emotional battle with many peaks and valleys. By the way CJ describes BJ's current situation it sounds very, dire even. If you get a chance stop by his blog site and leave the family words of encouragement to cover their household in warmth and fend of the cold cruel circumstances cancers brings. Bo vs Bac
The recent developments with his health really worry me. There aren't many of us; by us I mean Lung cancer patients that received a life extending bi-lateral lung transplant. Understand you have to be considered medically terminal to receive this experimental treatment but you have to be healthy enough to recovery from this procedure too.
Leave the family comments, they warm the soul, but be respectful of those of us who are immune suppressed we know you care but care from a distance as it is the cold and flu season.

Pictures (Snow & Fort Worth Parade of Lights)

Snow in TX, in December, what is that all about

Fort Worth Parade of Lights

day after turkey day

Enjoyed my Turkey Day, I ate in moderation I have to start my training table in order to be ready for the transplant Olympics this summer. I am thankful for those special people around me and to still be alive upright and vertical raising heck and embarrassing the girls with my air horn (at soccer games, dance recitals, spelling bees, basketball games well maybe not the basketball game too much echo, swim class....)

week in review

• I got my swine flu shot on Monday
• The CT scan on Monday was not too bad, no IV contrast sickness thanks to my NAC pills; I will get the results 12/14/09
• No black Friday for me unless you count the darkness the grayish / black I see (or don't see) when my eyes are closed and I am asleep.
• The Parade of Lights in downtown Fort Worth was pretty exciting the girls had a fun time, they got so excited when they saw Santa at the end of the Parade.

CT scans today

Getting ready to head out to Dallas, TX in all this fog. Bad weather is not good for people used to the heat and sun. A couple of Dallas doctor visits ago when driving in bad weather on a bumper to bumper highway parking lot I was tailgated and rear ended. How the HECK do you run into someone when the traffic is moving 5 mph??? Oh well we shall see what today's trip brings. I do however feel nauseous already, I wonder how bad I will feel after going through multiple failed IV attempts and ingesting all those shell fish (i.e. contrast dye) for the CT scan.

At the lg txp doctors in Dallas, the CT was painless today and I tolerated the IV contrast; however I am disappointed to know that a member of the post transplant team is leaving it is hard to train new doctors to what your medical condition is and to understand your unique personality.

PFT's were good I am 60% of a normal health person with two good lungs; I think I would be about 67% or maybe 73% if I had two full lungs.

My testosterone was in increased, I am mixing it with the steroids; it is not having much effect on me, I am still green, very green although I want to argue with everyone I even had an argument with myself on the drive over to Dallas today... I think I won the argument

Lab Work Day

I had my lab work today (normal stuff for the transplant team) with an extra tube drawn (for the endocrinology team). They are checking my Testosterone levels (side effect of too much chemo Rat Poison).

The cocktail of steroids and testosterone is turning me green.

wfaa news story

A story of hope and perseverance, fighting cancer, surviving a bi-lateral lung transplant, and beating back the swine flu. This story was well done by wfaa news 8 in the DFW. The reporter was Shelly Slater and her videographer Alan.

http://www.wfaa.com/home/Miracle-Man-overcomes-cancer-swine-flu-69900182.html

I might one get a SAG card (screen actor guild);....
"What chew talking 'bout Willis"

Spam or What...

I gave of potted meat (i.e. spam) along time ago even when I was a starving college student....(side note to self I am still a starving college student remember my back pockets look like a cute young couple all hugged up together).... Anyway I always get this spam / these comments captured below which is why I filter my comments. I don't understand it translate please.
I think it is an automated computer program that got a hold of my blog address and randomly sends out spam to e-mail addresses and comment accepting websites throughout the Internet.

Tough Love

Looks like I have a couple of cancer patients and transplant patient that will soon get to join the Jerrold Tough Love Boot Camp. It doesn't cost much at all. I only require these participants to have a good ear, or the ability to read lips. It would be nice if they had some back, junk in their trunk, behind, butt, hind pocks......BUT we all know that is the first thing to go when you find out you are terminal, have cancer, or need a life extending organ transplant. Remember my behind divorced me when I was diagnosed, we had a long conversation but my butt in the end said it could not stay in such an unhealthy relationship. I do get a card from my rear every now and then, my dip has apologized for allowing my back pockets to touch even though he says he has no intentions of coming back anytime soon... Sorry I digress the butt tale was just my way of saying I will be chewing on these other guys / gals ears rather than kicking them in the butt during my tough love boot camp. You have people working hard to keep you around so it is okay to mope at night for a little bit but in the morning it is game on you need to be about the business of living. I hope this boot camp is successful simply b/c the this Unhealthy highway is a rough road that could definitely benefit from some of this (Stimulus Money), it is not scenic like the Healthy Highway that intersects it.

I will need my students to stage an intervention one day, to chew on my ear and get my RearLess body moving especially when I don't want to. One day grasshopper the student will become the teacher.

There is no beginning or end.. Yesterday is history.
Tomorrow is a mystery.
Today is a gift.

Can't get the shot, Can't find the shot H1N1???

I seem to be spinning my wheels, wasting my time trying to find the H1N1 shot, and anyone to give it to me. The H1N1 vacine seems to be as illusive as big foot or the Locheness monster. I have asked many if not all the providers that I see and it seems I am getting the party answer, “if we get it, if we don’t run out, blah blah blah…..”; I am not going to worry about it my H1N1 care will be as it was before when the Type A flu loomed within my household, REACTIVE and 10 times more expensive (time, money, and pain). If I don't get the vacine I will keep staying away from large groups.

UT Southwestern, for instance, requested 157,578 doses. The state shows shipping orders for 12,050 doses. But the hospital has only received 3,500 doses, spokesman John Walls said.

Source: From
http://www.dallasnews.com/sharedcontent/dws/news/localnews/stories/DN-fludoses_10met.ART0.State.Edition1.4b515e9.html

Nov. 10, 2009

post - DFW Lung cancer walk

Raegan and Ravyn on the trail as I am running behind them multitasking (drinking water, taking pictures, trying to catch my breath, all the while reciting "I think I can.. I think I can").

The second picture is post race, we just did the 3k again this year so they could play in the bounce house and because I was really tired.

The walk was great I really enjoyed it even though I had to bribe the girls to not give me a hard time. I ran a little late for the opening ceremonies which is why I had to again bride the girls so I could make it at all. I had a great presentation to give but, it fell by the waist side once I got up to speak and start the race off. I hope to be better prepared next year if I am asked back. I got in some short burst sprints along the trail as I was pushing my youngest daughter on her bike and chasing the oldest so she would not get out of my line of sight. Katie did a fantastically awesome job along with the other Lungevity staff and volunteers.

DFW Lung Cancer walk Today

I am getting ready to head out to the DFW lung cancer walk today. It is a bit breezy and only about 67 degrees out some I am still on the fence as to whether or not I am going to take the girls bikes so they can ride them. The bike thing will be a game time decision. I am also happy that my wife has finally returned home from her business trip that lasted several weeks. Life as a single SICK parent is TOUGH.

Oh well heading out now and yes my feet hurt (HURT)... I will have to publish older blogs now that I have some time.

Me, Myself, and I

I Do exist

My off Friday

I was off today as we work 9/80 schedules on the job. For the first time in a long time I don't have to go to class, I am off, I am free, I don't have to study, the day is mine...eh not really, but it sounded good.

1. Get the girls ready and off to school
2. Take my truck and get the tires rotated and balanced
3. Pay some bills and run some errands
4. Start some laundry
5. Take my wife's car to get the tires rotated and balanced
6. Go home and make two lunches
7. Eat lunch with Raegan and DOMINATE the class during recess afterwards
8. Hurry over to Ravyn's school and listen to story time and have lunch and talk about Halloween costumes with the pre-schoolers
9. Run some more errands
10. Get some snacks for the after school day care party
11. go to the party (yes I was late)
12. Hurry home to meet the cable guy, getting some more football channels "duh duh du duh"
13. Go back to the school and pick up the cookie order (they couldn't find it)
14. Go home wash more clothes
15. Go back to the school and finally get the cookies
16. Pick up the girls
17. Bake pizzas with the girls
18. Eat, watch noggin and take it easy it is Friday
19. Get ready for the soccer game on Saturday

Need a nap

Soccer

The girls did well this past fall in the Respective soccer leagues. They played on different teams but they had the same coach which was great so the practice times and game times never changed.

Raegan was the leading scorer on her team, she is and aggressive hard charging attacking striker.

Ravyn did well too, she is just getting her feet under her, she scored a few goals but we will have to work on her killer instinct.

Oh yea I tooted my air horn on every goal the girls or their teammates made. Note: I was the only parent out there in the YMCA youth soccer league with an air horn, bang sticks, pom poms, and megaphones..... Can you tell I am their biggest fan, and a constant source of embarrassment already.

single dad again

My wife is once again out of town for work. I hope I can stay healthy over the next couple of weeks. The last time she was off on travel I had to visit the Emergency Spa, and it was not a good visit. (Father's Day 2009)

There hair is already done for the next couple of weeks, $30 bucks each to get their hair done at the beauty shop, Time and stress saved not having to do their hair with my fat fingers Priceless.

Piggy Flu

Day 3 of the Piggy Flu (Type A flu); I got it and the girls have it. We are a sad looking bunch eating Popsicles, Pedolite, crackers, and toast. This flu is painful I am glad we are starting to get better, that tamiflu works wonders.

CT is over

The CT scan was uneventful today, the IV stick only took one try they got in in my forearm. I am now sick of the contrast dye. I get sick now as that crud is being pumped into me. I do however take NAC pills for 3 days to offset the effects on my internal organs. The price you pay in order to not be blind sided by lung cancer / or any cancer AGAIN.

CT tomorrow

CT tomorrow I think I am anxious, not nervous but anxious. I think more about the contrast dye and how many times is the nurse / CT tech going to try to painfully shove the IV large gage needle in my arm before I say "Hell No" throwing the towel in...bleeding all over the floor as I walkout spewing four letter words while they page the emergency nurse on call to put my IV in.

Lung Cancer Research May Lead To Early Detection

http://cbs11tv.com/health/lung.cancer.research.2.1143814.html

Recently I was interviewed by CBS 11 to talk about LC (lung cancer) and my particular case. This interview also mentions that there is some great research being done in the area of non / never smokers that are diagnosed with lung cancer. I really hope this will help people to understand that cancer and YES even lung cancer is an every PERSON disease and no one is excluded from one day possibly having to deal with a similar diagnosis. I never smoked but that is irrelevant; a persons lifestyle does not warrant whether or not they should or should not have lung cancer. The smoking stigma associated with cancer makes it a crime in the court of public opinion for pharmaceutical companies, government, and Joe the average citizen to contribute to lung cancer research.

Short Spa Trip today

Had to stop in at the spa today, I was a little nervous as I feared they might won't to keep me; (I was only there to visit my cancer homie / SOON to be transplant homie; and to get a nasal wash). I was in and out so I can enjoy football at home.

Bo & Adrienne bad news

Got a bit of bad news today, not about me about some of my cancer / transplant homies.

• Bo has developed clots and is being watched more closely by the Dukies (Duke medical staff)
• Adrienne will have a procedure to check her lymph nodes (making sure the BAC has not spread, this is a very uncomfortable but common FEAR all BAC patients had to undergo before transplant).
• I am felling ill so Adrienne and I might be neighbors at the SPA (look out nurses...)

Prayer List
Bo and Family
Adrienne and Family

missed blood work monday

I missed my blood work yesterday at the lab, my orders were not there. I am going to have to apply some of my engineering education to use at the Heart / Lung Clinic and devise a more efficient system that incorporates checks and balances ensuring that lab orders are sent when they are supposed to be sent to the lab.... with a way for the patient to verify receipt of the orders before he/she has to alter their medicine regiment the night before labs (this is done based on the test the doctors order).