BAC (lung Cancer) Jerrold

CT scans yesterday

2012-02-09T04:04:00.000-08:00

Got my 3 month CT scans on yesterday following the microwave procedure on my lung on Nov. 7, 2012. We shall see what the results are in a day or so. In this case no news is good news. I hope I fair better than my Tarheels, "come on man" you got beat by a Freshman in the last, the last second of the game.

6+ years and counting

2012-02-03T03:28:00.000-08:00

6+ years as a lung cancer patient as of mid day February 1, 2012. Originally diagnosed as a Stage 4 BAC patient before the chemo, transplant, and follow-up surgery. The past 6 years have provided an unexpected journey but I wouldn't trade the experiences for anything. Let's see where the next 6+ years will take us...(Can I say that because I am told by some I am supposed to die within the first year of diagnosis)...

Coach Paterno

2012-01-22T07:52:00.000-08:00

Sad day for football fans Joe Paterno passed away this morning. Coach Joe was a class act glad he doesn't have suffer from the difficult situations that he was dealing with.

Happy belated New Year

2012-01-18T15:59:00.000-08:00

happy belated new year. The remainder of this post has been blocked & blacked out due to Congress over stepping their political boundary.

Millions of Americans oppose SOPA and PIPA because these bills would censor the Internet and slow economic growth in the U.S.

Two bills before Congress, known as the Protect IP Act (PIPA) in the Senate and the Stop Online Piracy Act (SOPA) in the House, would censor the Web and impose harmful regulations on American business. Millions of Internet users and entrepreneurs already oppose SOPA and PIPA.

The Senate will begin voting on January 24th. Please let them know how you feel. Sign this petition urging Congress to vote NO on PIPA and SOPA before it is too late.

Merry Christmas

2011-12-25T21:42:00.000-08:00

Merry Christmas.

Today was a good day I stayed out of the hospital which is a good thing since I have sen the inside of a hospital / ER at least 3 days last week. I have been dealing with some kind of cold picked up more than likely at my daughters dance recital a 2 weeks ago. Stupid me I didn't wear a mask the venue is TOO small and yes sick people were out in full force supporting their little dancers. I hope I am on the mend the transplant doctors are running some test and have me on some new temp. antibiotics.

2nd Day back at work.

2011-11-15T07:55:00.000-08:00

Yesterday was a bust, I had no energy and limped through the day as I attempted to go back to work after a week off post surgery (11/7/11).

Last week at a glance.
Monday
Surgery, I thought I would be getting an RFA procedure but going in they informed me it could either be RFA/ or / Microwave. When I woke up sore throat and all (incubation) with more IV's than I started off with I found out that the doctors did a Microwave procedure on only one nodule they think the other might be left over scar tissue from the wedge resection of 2009. I went home high as a Kite that night in the dark, in the rain with a nervous chauffeur (thank you morphine).

Tuesday
Sore as if I was still playing football going through preseason (abs and back were really sore), also deep breaths hurt. Lots of naps.

Wednesday
Rested most of the day, soreness decreased, took off bandage on my back (it stayed 12 hours longer than it should have), showered and I can't really see the incision from the Microwave.

Thursday
Resting, soreness lessening, breathing is getting better.

Friday
Repeat of Thursday Saturday Did the DFW lung Cancer walk, I walked the 1 mile course it hurt, I was tired very tired afterward. The event turnout was good...it has more participants each and every year.

microwave instead

2011-11-07T18:48:00.000-08:00

No RFA today, I was given a microwave procedure on on of the nodules. We will watch the othe nodule as it is right on the line from the wedge resection I had in 2009. CT scans in 3 months.

I am sore and tire but at home so off to bed my belly is full. to quote Autin Power's "I'm a fat b4st4rd".

RFA Day

2011-11-07T04:20:00.000-08:00

Heading to UTSW for an RFA procedure on my two nuts (actually the nuts are what I call these two spots on my right lung) Let's keep this brief post G rated. Time to hit the highway and fight mad traffic.

The Results SUCKED

2011-10-01T05:46:00.000-07:00

My results sucked. Two nodules bot 9mm and in my right lung. The doctors at UTSW are trying to presuade me to go with SBRT as a treatment but I am not sold. I will still look for the best option FOR ME Note:... I am not a lab rat.

Results Day..

2011-09-26T11:06:00.000-07:00

Waiting for the results of my latest CT/PET scans from last week. I am also scheduled to talk with the surgeon and radiologist today too. Cancer sucks.

returning to work in the morn.

2011-08-29T19:45:00.000-07:00

Back to the salt mine in the morn. after sitting around the house for 3 work days.

Umbilical hernia day

2011-08-24T00:21:00.000-07:00

Another surgery day, we will see how it goes. Off to fix my umbilical hernia. I think it might have been caused by a combination of too much coughing and trying to lift more weight than I should.

July 7, 2011

2011-07-07T07:32:00.000-07:00

CT scan today, I hope they hurry up because my stomach feels alittle uneasy...I need some food. I also need to get my stomach checked since I moved all of our household goods myself (I still got it).

random note: I started back riding my motorcycle last week. First time having a good ride in 5+ years (it was HOT though 104).

It is time for a change regarding LC

2011-05-20T18:28:00.000-07:00

Random thoughts...

I need to publish post that only I can see

The different groups supporting LC need to pool shared resources while focusing on the unique areas

It is good for LC survivors together from time to time

BC (breast cancer) is not the enemy. I LOVE THE BOOBIES, THEY'RE NICE

Dissolving the stigma around LC is key to improving the survivability of a LC diagnosis

yet another PET/CT scan

2011-03-24T22:14:00.000-07:00

My four year transplant(versary) starts on Friday. I have my CT/PET scan, bone density, abdominal aorta sonogram...and..other test including labs. I will be getting an extra test to check my CMV levels since I have been so tired an sick lately. I hope to meet with doctors from Baylor hospital in Dallas, TX next week during the lung cancer walk in Dallas on 4/3/11. I fell like UTSouthwestern has dropped the ball and no longer see me as patient I fell like a walking / talking medical white paper.

Oh well short post as I need to eat before the magic hour arrives hat means I can't eat after a certain time for fear that the food will mess up the pending test.

Anniversay (4 years post lung transplant)

2011-03-06T18:34:00.001-08:00

I forgot that a few hours yesterday and today mark the 4 year anniversary of my lung transplant... on such an auspicious occasion as the only thought running through my mind is "Eat Shit Conservative Medical Personnel, Rick James".

Quickly approaching the 5 year mark

2011-01-25T17:29:00.000-08:00

Quickly coming' up on the 5year mark of my stage 4diagnosis of BAC lung cancer. I never should have made it but I did so, suck egg conservative members of the medical community who felt obligated to still my joy and try and take away my hope. 2/1/2011 is gonna be a good and better night even though I have a pending surgery weighing on me.

Merry Christmas, Happy Holidays & Seasons Greetings

2010-12-24T22:38:00.000-08:00

Merry Christmas, Happy Holidays & Seasons Greetings.

PET scan results

2010-11-01T06:51:00.000-07:00

PET scan results today and hopefully and answer as to how I got an infection in my hand during the procedure. I hope to get all the facts and all the info. from these scans. I have lost confidence in the doctors at some of the doctors I see at UT Southwestern. I feel I don't get all the info. and I am often discussed in the third person since I am not invited to the clinical review boards where interesting cases are discussed. I have a boatload of question for the doctors today:

I would like to get all the information available.
I need some sort of plan B, let's plan for continual recurrences... how should this be handled.
How would you handle my case if you were in my shoes or if one of your loved ones was in my position.
What are the options for dealing with LC?
What are my options since your chemo sucks and most hospitals are so conservative?
MORE Questions to be added later depending upon the answers given.

PET Scan in the Morn

2010-10-27T20:13:00.000-07:00

PET scan on Thursday morn. (test to see if the cancer has spread). I hope to talk with the transplant, oncology, and thoracic doctors within the next couple of days. I find it very interesting that now UT Southwestern doctors can do an RFA procedure for the lungs. I also find it interesting that now that I plan to go else where to deal with this nodule should it turn out to be of the AdenoCarcinoma family all the before mentioned medical disciplines would like to chime in on my pending decision. I think I will sell advertisement space and call the the decision.

to breakup or stay together (UT Southwestern or Baylor medical???)

2010-10-26T19:17:00.000-07:00

As unemotional as I would like to make this post, that, is something I can not do. I am pretty pissed about several aspects of my care and condition management at UT Southwestern. Before I address the medical elephant in the room I have been advised to not burn bridges... my response is bridges burn both ways.

Let's tackle the elephant.

I am disappointed with the lack of communication between oncology, thoracic surgery, and the lung transplant clinic.
I am pissed and saying what the hell as I learn more about RFA as a minimally invasive procedure that can be used to kill cancer nodules in the lung(s).
If you recall I had a 1.5 cm nodule surgically removed by a wedge resection 3/2009. I have recently learned that the thoracic surgeon can do RFA procedures. My beef is why wasn't I offered this treatment option . Why did they elect to take almost 1/3 of my right lung.
There is are no plans in place as to how recurrences will be dealt with.
Oncology won't help me get my info. together to pass it on to UCLA so I can possibly have the RFA procedure done on my 5mm nodule in my right lung.

Short Rant I am getting feed-up I am not willing to give anymore huge chunks of lung tissue to research.

RFA Links:

http://www.ncbi.nlm.nih.gov/pubmed/16366374

http://www.radiologyinfo.org/en/info.cfm?pg=rfalung

http://www.lcfamerica.org/blog/?p=90

Cancer Sucks

2010-08-04T20:24:00.000-07:00

I was saddened to hear about the home going of another unexpected warrior in the fight against lung cancer. To read about the journey of Melissa please use the link included in this post.
http://www.caringbridge.org/visit/melissapeterson

I can't put in to words how bad I feel for her loved ones they will forever miss her, I only hope they understand that she is now free from pain and the worry cancer brings.

Boston Med (TV show)

2010-06-24T20:05:00.000-07:00

I like this show Boston Med. I get to see my old stomping grounds from my days living in New England. I also got to view some of a lung transplant which was interesting, and hits home as I am eternally grateful for the gift my donor and his family gave to me and mine as I am still hear trying to do the right thing. Anyway like the show....or at least I like it so far.

CT Day

2010-06-11T01:44:00.000-07:00

Heading off to get my quaterly CT today and to have another post-op visit with the ENT doctor. Other than that I think I will just take it easy and try to beat the heat.

Memorial Day 2010

2010-05-31T22:05:00.001-07:00

This Memorial Day Weekend was great but, too short. On this weekend we celebrated birthday's, honored our countries military personnel, and reflected on the rich life of my late father (a career military man).

Back to work in the morning, I am still in pain from the surgery but there is nothing to watch on TV.... (i.e. I like Drew Carey I think he is funny but he is a dry, robotic host when he is taping the Price is Right).

Back in the Spa (Hospital)

2010-05-19T16:46:00.000-07:00

Had a deviated septum & tonsillectomy procedure on Monday. It HURT I can't swallow so I was home for a few hours on Tuesday after getting out of the hospital....then ta da....back to the Spa so I can get my transplant meds by IV.

I should have never been released to go home only to return back to the ER 24 hours later, This was / is a huge FUCK-UP and COMMUNICATIONS breakdown between the post transplant doctors and the ENT Department.

End of April

2010-04-30T20:25:00.000-07:00

I finally got approval back from the insurance company about my next surgical procedure. Hopefully soon I will have the UVV surgery to help me to get some real sleep at night.

Last day of soccer tomorrow, and it can't come soon enough I need a break.

I finally got the appointment times / dates for my annual transplant evaluation (two months LATE). The jury is still out on the new direction that heart / lung transplant dept. in has taken, I might start looking toward the other transplant team for heart / lung at the other transplant center for lungs in Dallas.

No more Coughing (ALMOST)

2010-04-26T23:56:00.000-07:00

I almost made it through the day without coughing. I had only a few minor tickles in my throat but nothing to be alarmed about. The coughing today is mild compared to what I have been experiencing since the day after we took on Six Flags. I rode too many of the rides that respiratory patients shouldn't ride and just being in such a big crowd I probably picked up some kind of bug. I can't believe that it is almost summer time and my little honor roll student will soon matriculate into the second grade while the little one goes off to kindergarten (private because of her birthday).

Oh well it is good to get back to blogging' and helping' my cancer / transplant hommies. Blogging' affords me an opportunity to dump all these words in my head so I can continue on my thoughtless path in search of the grasshopper.

Eazy Day

2010-04-25T13:28:00.000-07:00

I have decided to release the blog post that I have kept private since the time of AM's lung transplant. I will be publishing them over the next week or so...if I am not in the SPA due to a really painful cough that has been bothering me most of April.

CT time again

2010-03-10T18:59:00.000-08:00

It is time for my quarterly CT scan so I am off to UT Southwestern in the morn to take care of that and speak with the docs. about some other medical issues. I hope I don't get to sick from the contrast dye given to me during the test.

I am starting early for the Calistoga to Santa Cruz relay race for April 2011. I would like to put together two teams; a walking team and a running team. details http://www.therelay.com/

3 years and counting

2010-03-05T18:36:00.000-08:00

Well it has now been 3 years since I was transplanted. The road hasn't exactly been smooth but it beats the alternative and I would not trade the experience and the unselfish gift (of organ donation) for all the gold in Fort Knox.

Doctors apt & Adrienne update

2010-01-26T08:55:00.000-08:00

Adrienne made it through her bi-lateral procedure but had some bleeding and was put on the ECMO to allow her heart and lungs to regain their strength and adjust from the procedure (note: lung transplant is a dramatic procedure). She is progressing nicely though, I hope she continues to show such good signs as she is showing now.

My first doctors apt. of the year, I think I will break my record from last year....I think I will be over the out of pocket limit (money I have to spend) by mid February this year; verses the end of March last year.

Adrienne got the call (2 new lungs)

2010-01-21T19:06:00.000-08:00

Adrienne my lung cancer bud here in TX just got the call for her transplant at UT Southwestern. I will be up all night just like with my bud Bo when he got his transplant I was like an expecting father. Glad I don't have to go to work on Friday.

Sad news

2010-01-10T21:44:00.001-08:00

I was saddened by a Christmas card I got the other day. The card was from the family of one of my cancer homiees in Palo Alto, CA. It told me about how the family was doing and informed me the Sharron had passed away several months ago. Sharron was a great friend I really enjoyed her and her family they really helped me out during my time in CA. Sharron showed me the ropes of how to deal with cancer she will be forever missed.

This is a picture of the LSLW "live strong live well" group at the Palo Alto (Page Mill Rd.) YMCA. This was my cancer workout group, the picture was taken Sept. 2006. That is Sharron front row center.

Roll Tide Roll

2010-01-08T10:19:00.001-08:00

To all those die hard UT fans over at UT Southwestern I just have 3 words for you "Roll Tide, Roll".

Return to Work

2010-01-03T19:35:00.001-08:00

Well on Monday I will happily return to the salt mines although it will be vastly different as I try to transition so I can get to work early. Butt early, O dark hundred early (i.e by 6 AM CST) so that I can pick up the girls, get their homework done, and shuttle them off to their extra curricular activities. This transition will be hard, I think Ravyn summed it up best (we are not morning people, like Rhonda and Raegan) she commented one December morning that Raegan uses too many words in the morning.

Happy New Year

2010-01-02T22:23:00.000-08:00

football, football and more football

I hope I stay out of the Spa this year as my health care has undergone a dramatic change for 2010.

New Years Eve

2009-12-31T18:52:00.000-08:00

It is new years eve and not a creature is stirring..... we are staying in out of the cold away from germs and enjoying each others company (I'd rather be watching bowl game re-runs, my skin is itching I am going through my yearly 12 stages of football withdrawl).

Merry Christmas

2009-12-25T23:50:00.001-08:00

CT results today

2009-12-14T04:45:00.000-08:00

This morn. I will head out to UT Southwestern to get the results from my last CT scan. We shall see what new mysteries the camera will /or/ will not reveal. All I have to save is it the results are less than favorable I will be like a Spider Monkey all over that cancers A**; (I had to work that in after watching Talladega Nights last night).

CT scan(s) showed nothing remarkable (my version of medical speak) they looked all clear, they only noted that they could see scaring from the last surgery. My day still continues though I have more diagnostic test today and to see the skin doctor just to make sure that skin cancer can't pop-up since I am immune suppressed.

The Home going for Bo Johnson

2009-12-09T06:59:00.000-08:00

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

2009-12-08T11:24:00.001-08:00

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)

2009-12-05T09:11:00.000-08:00

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

2009-12-03T13:08:00.000-08:00

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)

2009-12-02T10:00:00.000-08:00

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

Fort Worth Parade of Lights

day after turkey day

2009-11-27T01:38:00.000-08:00

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

2009-11-23T05:34:00.000-08:00

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

2009-11-19T00:38:00.000-08:00

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

2009-11-18T08:31:00.000-08:00

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...

2009-11-18T00:00:00.001-08:00

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

2009-11-17T00:18:00.000-08:00

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???

2009-11-10T19:21:00.000-08:00

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

2009-11-08T21:51:00.000-08:00

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

2009-11-07T06:17:00.000-08:00

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

2009-11-02T14:43:00.001-08:00

I Do exist

My off Friday

2009-10-30T23:50:00.000-07:00

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.

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

Need a nap

Soccer

2009-10-28T20:05:00.000-07:00

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

2009-10-27T20:25:00.000-07:00

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

2009-10-16T08:47:00.001-07:00

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

2009-09-10T23:26:00.000-07:00

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

2009-09-09T19:48:00.000-07:00

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

2009-08-30T05:23:00.000-07:00

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

2009-08-29T19:31:00.000-07:00

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

2009-08-26T19:39:00.001-07:00

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

2009-08-18T01:26:00.001-07:00

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).

Vacation overload

2009-08-06T16:50:00.000-07:00

bowling, swimming, skating too much fun

First time skating in 26 years (I didn't go down)

The winner is ????

Ravyn sick (I hope I don't catch what she has picked up)

I have nasal drainage (I have a little clear nasal drainage, could be the climate here in NC it is alot greener than TX and much more humid)

HOT 4th of July

2009-07-04T10:14:00.000-07:00

Today was big fun we just hung out at NRH2O (water park). It was hotter than an over heated engine in death valley. I burned my feet (the bottoms) walking from one ride to the next, they need to plant grass over the sidewalk. That sidewalk will break you down, I think the expression "makes me weak in the knees," comes to mind. I did get a good nap at the park under a tree in my half dome tent, I just went to sleep like a little baby while everyone played and splashed around me.

ER visit from hell (Father's Day)

2009-06-22T08:12:00.000-07:00

Yesterday I felt really bad and tried to tough it out as long as I could but in the end I had to get a ride to the ER. My wife is still out of town that is why it took me so long to go into the ER, I had to find someone to watch the girls for me. I got my sister-in-law to watch the girls and drop (STRESS the word drop off) at the ER at about 10 PM CST. I could not hold any fluids down, eat anything, or even take my meds; on top of all that I was vomiting all day. The visit to the ER close to my house (Southwest Side of Fort Worth, TX) was horrible:

They don't take the precautions that should be taken when handling a transplant patient
Most of the medical professionals I was treated by had never dealt with a lung transplant patient.
They refused to contact the transplant doctor on call at the hospital where all my post transplant care is given.
These doctors (loosely used) basically gave me some IV fluids, some anti-nausea meds, then sent me home (discharged at 214 AM CST) Knowing I had no one at home to watch me, not knowing if I could take my meds, and also with the knowledge that I did not have a ride home. When I told them I had no was home at 214 AM they said I could just sit and wait in the waiting room.

After this experience I hope I NEVER HAVE THE MISFORTUNE of Being TREATED at Harris Methodist Southwest's ER staff ever again.

Graduation

2009-06-03T21:07:00.000-07:00

Kindergarten was "Easy Breezy"

Little sister was not interested in pictures she wanted to go to her school and have snacks

I am just happy that I am still around to enjoy priceless moments like this; Raegan is also helping me edit my blogs as I am not smarter than a rising First Grader.

birthday

2009-05-30T20:16:00.000-07:00

Today I celebrate,

Today Raegan has a birthday so I celebrate, I also celebrate the home going of my father who passed away on this day last year. Reflecting on the events of a year ago, I was at a lung cancer advocacy seminar in Chicago this time last year when I got the call about my father. I knew one day the call about his passing would come, I wondered who would make the call... the call came from my mother. She told me he passed peacefully and at home. Upon hearing this news I was not as prepared as I thought I was despite all the life and death I had since over the past three years. After the initial shock I was relieved that he was at peace, he didn't have to suffer anymore, and he could now be with his heavenly father.

On this day I also strolled into the ICU where Bo was being treated before he got his double / double (second transplant). Keep fighting BJ and Family.

class field / day

2009-05-28T20:52:00.001-07:00

Field Day (run Raegan run), I was late for class due to field day (field day was scheduled a long time in advance before I knew I'd be pursing another graduate degree)

Cellcept is generic Now

2009-05-21T20:33:00.000-07:00

Cellcept is now a generic medicine, good news for my wallet..... now for the rest of the meds we take daily and when we are sick, experiencing rejection, or just a little out of the norm.

Rained out (no softball this year)

2009-05-17T09:39:00.000-07:00

The transplant Awareness softball game with the Southwest Transplant Alliance (Transplant recipients) taking on local media was ..... can you believe it rained out (Yes it rains in Texas). Better luck next year although I have spent the last few weeks getting ready for the game.

Running the stairs over at TCU's football stadium
Throwing in the racquetball court for half an hour every 3 days
Taking batting practice twice a week
working on my forearms, and total body lifting too.
Lastly I started back swimming once a week

I guess I will have to go back to the old me, and try and get back in the good graces with my couch, I think I will get her a nice snuggle blanket...

I saw the doc

2009-05-14T15:18:00.000-07:00

Today was a good doctors visit, I hope my insurance will pay for the procedure (Gynecomastia) it is a result of past medical procedures so we shall see, it also messes with my ego and is painful...

2nd Try to see the new Doc. in Dallas

2009-05-14T01:51:00.001-07:00

This is my second try to see the new docs in Dallas at the UT Southwestern SPA. The doc is a plastic surgeon to help with my Gynecomastia that I have developed since my transplant. The Gynecomastia is due I think because of some of my medication(s) and the clam shell incision that is used for a bi-lateral lung transplant. Gynecomastia effects your big ego, but it does allow you to get the Victoria Secret catalogue without raising an eyebrow (looking for a Bro).

Swim lesson #2 (kind of)

2009-05-13T11:17:00.000-07:00

The girls are starting there second swim class of the year soon, so there is no rest for the weary... I can't complain though I am enjoying the extension that lung transplant has afforded me. I hope all my post are vanilla and boring for awhile with no medical surprises to speak/blog about.

Last Soccer Game

2009-05-09T18:56:00.001-07:00

Today it was very cold and windy I am wondering if we will get some rain today, it has been gloomy all day so far. The ray of Sun today is Ravyn’s soccer game…her last soccer game of the season. The season was interrupted by the Swine Flu (H1N1), Fort Worth and some of Dallas was basically shut down because of fears about this new flu. Ravyn played really well, she and her teammates had a lot of energy today (could be due to the pregame doughnuts) sprinkled doughnuts at that.

Gynecomastia

2009-05-07T07:15:00.000-07:00

Going to break in a new doctors, and re-organize his/her office. I am going to see a plastic surgeon to deal with my milkshakes, male boobies (from transplant ONLY). It is kind of tough lugging these fun bags around plus they are sore (all due AGAIN to the transplant for a double lung you are cut in a clam shell procedure). With Gynecomastia we get to VS (Victoria Secrets) catalogues at the house his and hers.

Day before returning to work

2009-05-04T19:07:00.000-07:00

The Day before I physically go back I have been working from home up to this time. Working at home has allowed me to heal in a relatively clean environment away from the germs and swine flu carried by the general public. It will be good to have a change of pace, some new/old scenery, and someone to talk and bug during the day.

The Swine Flu

2009-04-30T11:03:00.000-07:00

The Swine / Piggy (H1N1) Flu still lingers in the DFW.... Crowley School System has not reacted to this Flu yet..... I am real nervous about this Flu.

Recovering from the TCU stairs while getting ready for the media / transplant recipient softball game.

Today is the last, final.... soccer game of the Spring 2009 season.

Post Birthday Workout

2009-04-28T20:35:00.000-07:00

Well I am older than I ever thought I would be now, so to stave off that mid-life crisis I will go and workout at TCU and conquer the stadium stairs and do some angled push-ups in between stair sets. It's hard fighting father time, and also trying to get back in shape post surgery and cancer AGAIN.

A birth year older

2009-04-27T19:37:00.001-07:00

Happy to see another year pass.

Doctor Visit

2009-04-23T19:55:00.000-07:00

Went and hung out all FREAKING day at the heart / lung clinic but I had a packed lunch, a snack, another snack, my IPOD, puzzle book(s), laptop and Internet access.... I only got bored the last 2 hours while sitting in the waiting room (so I took a nap, that right I was sprawled out on the chairs Al Bundy style snoring and scratching).

The visit was uneventful. My meds are still the same, the decreased prednisone 5mg in the morn. and Double Strength Bactrum on Monday and Thursday now. I finished my annual Lung Transplant evaluation my PFT's are up from my March Spa visit (which is good) I didn't do the 6 minute walk as that was done in March right after I got out of the Spa and it was still more than double what I had done the previous year (I think the headband, the full body suit and the healies helped).

NY Times Article

2009-04-22T19:42:00.000-07:00

I recently was fortunate enough to lend my voice and story to an electronic article that was produced by the New York Times staff Karen Barrow and others. I hope this article will increase awareness and de-stigmatize this health care crisis (Lung Cancer).

http://well.blogs.nytimes.com/2009/04/22/voices-of-lung-cancer/

http://www.nytimes.com/interactive/2009/04/23/health/healthguide/TE_LUNGCANCER.html

Tired Tuesday

2009-04-21T07:25:00.000-07:00

Saturday: Ravyn did not do so well this past Saturday on the soccer field, I am going to call her the Rock because if the coach puts her in position she is not going to move, at least she isn't chasing butterfly's.

On Saturday eve I tired running at the TCU track, it was an ugly sight I did win EVERY race though. (R³ kept challenging me to race after race until they got hungry. I tried to run a Jingle Jangle (sprints that we used to run during football across the field over-n-back over-n-back for time) I got in one ugly jingle. We finished up at the Purple Cow to celebrate the fact that I made it off the track on my own and not in an ambulance.

Easter / Soccer Photos

2009-04-15T14:24:00.001-07:00

Easter 2009 Raegan and Ravyn (before I / Rhonda found matching shoes for Ravyn so she could look like Ravyn)

Soccer with Ravyn "the Rock"

return to work

2009-04-14T20:16:00.001-07:00

I am returning to work today. I will be telecommuting; there are some people at work that might be a little under the weather. It will be good to start to work my way back into a normal routine I am experiencing at TV burnout (ESPN, CNN, HG, MSNBC....)

Shopping

2009-04-10T22:40:00.000-07:00

What the heck, I can't just sit back and recover. I am shoe shopping for a pair of Easter shoes for Ravyn. Could I not have been told about the need for Easter shoes earlier so I didn't have to work so hard swimming up stream against the mall traffic, I can't move the crowd like I used to I am not such an imposing figure like I once was BEFORE... BTW I had no luck finding the shoes one mall down and 12 stores under my belt.

As I am a respiratory patient I can't garden or manicure my yard anymore, my wife is now taking an interest in the yard (landscaping) and planting flowers. She is taking over my domain and I can't find an appropriate N95 mask to keep my lungs free of the fungus and bacteria that lye within the dirt.

Zoo Day

2009-04-08T12:21:00.000-07:00

I am a month and 24 to 40 hours out from my surgery and the pain is becoming more bearable. I will stand firm on my soapbox that a wedge resection is alot more painful than a bi-lateral lung transplant with a clam shell incision. As my energy increases and pain decreases I need to do what I can to stress my lungs and my entire respiratory system.....so the girls R2 and I went to the zoo. I got alot of walking in, I wish I had our Radio Flyer (wagon) so the girls could pull me, that zoo kicked my but. I am SO glad we got there after school with only an hour and fifteen minutes left before the zoo closed.

Oncologist visit on Monday

2009-04-05T10:35:00.004-07:00

I will go see the oncologist tomorrow to see what the surgery result(s) are and if the pathology on the tissue taken is back yet. We shall see what happens, at this point nothing will surprise me (medically speaking).

Dam April fool's

2009-04-01T21:10:00.005-07:00

Still sore, still trying to recover but my wife once again played her yearly April Fool's joke. Since she gets up butt early in the morn to commute to Dallas she called me on my cell phone to say she had a blow-out while she knew I was still sleep. I start telling her to call triple A (AAA) then she blurts out April Fool's....... I throw my phone and go to bed....... pay back is comin'.

Back to the doctors

2009-03-31T10:44:00.005-07:00

Saw my endocrinologist today, it was a pretty good visit. I got a new one touch machine to track my sugars (steroid diabetic) since I need to monitor my vitals more closely since I am going to be more prone to rejection now (kind of like the first year out from transplant).

Rest and More Rest

2009-03-29T20:10:00.005-07:00

Resting or trying to rest. My ribs still hurt from the surgery and I need to start trying to do some sort of work out to help break-up all the new scar tissue I have accumulated from this wedge resection (that hurt like hell). Guess I will sleep in the recliner and watch some basketball (if I wagered I would wager on UNC).

Free at last (once again)

2009-03-28T21:41:00.005-07:00

Free from the hospital once again, they kept me over night after my bronch because of the elephant drugs they use to knock you out during the bronch. I had to check myself out seems when the orders were written for me to be admitted on Friday they forgot to include my transplant meds. Luckily I had enough meds in my truck for Friday but not for Saturday so after missing two doses this morn. I decided it was time to go.

The bronch hurt my joints or the medical staff from the 3 floor must have come in the room during my bronch and pounded on me. My joints haven't hurt this bad in well over a decade trying to get up and function on Sunday after a Saturday football game. I had to ask for some pain meds and several heating pads. Next bronch I think I will wear rib pads and hip pads.

Good news I didn't miss soccer game number 2 soccer game was canceled due to the cold weather in TX.

Looks like I will be burning up the highways between Dallas and Fort Worth next week.

Back to the Spa on Friday

2009-03-26T04:45:00.004-07:00

Well I guess I have to go back into the Spa on Friday for a bronchoscopy. The transplant doctors want to make sure that I don't have some sort of infection going on. I hope I don't get stuck on the third floor again.

A star is born

2009-03-22T00:07:00.005-07:00

First Soccer Game.... Ravyn had her first soccer game she didn't score any goals but she showed signs of improvement in her confidence and independence; she had fun too. Her team won by the way, they don't officially keep score but I DO.

Double Date

2009-03-19T23:03:00.007-07:00

I hope I will have a double date with the girls R² this eve.

Since this most recent surgery and the cancer recurrence my meds have changed slightly. I take Prednisone (steroid) 5mg once per day and Bactrim double strength on Monday and Thursday now.

With the med change I am now walking a tight rope because my doctors and I are in a delicate balancing act. By lowering my Prednisone I will be boosting my immune system yeah fewer viruses GOOD and fighting the cancer (Jack's army, Jack's brothers, Jackass part two....).

With a stronger immune system (NOT GOOD) I increase my chances of rejection, I white blood cells want to aggressively attack foreign objects in the body (i.e. transplanted lungs in my case).

NO ONE SAID IT WOULD BE EASY.

Uh it's Thursday

2009-03-19T10:34:00.007-07:00

Busy Busy Busy day.....

I had to drop yet another class as I was attempting to get my 4^th Masters.... through this whole round of medical stuff SMU Bobby B. Lyle School of Engineering has been very understanding and accommodating throughout all of this. I did have a hard time doing the right thing in this situation (dropping the class) makes me feel like I am quiting.

If dropping the class was not enough I really really feel bad that I let Ravyn down today. As I was getting the girls ready for school this morning I told her that I would come and watch her at dance class today. When I picked her up she reminded me several times that I didn't come to dance class today. I had a scheduling conflict due to the war on lung cancer, I was being interviewed by the New York Times which will help break the stigma and raise awareness about lung cancer, but I sure do feel bad about missing dance class (very rarely do I get a chance to go to Ravyn's dance class). I have already promised to attend next weeks class but I already see a conflict there too, I have all day doctors visits in Dallas.

Soccer practice was good Ravyn is becoming more independent and comfortable being in a new environment.

Smack Down

2009-03-18T08:23:00.006-07:00

Not much to do today, I have to go to the hospital and lay the smack down CALMLY explaining to the hospital bean counters that they have made a gross billing error and it shouldn't happen again. Once I have straitened out the hospital billing problem I think I will take a nap or two; by my old calculation for everyday you spend in the Spa it takes you at least a day and a half to recover once you have been paroled.

Free

2009-03-17T10:48:00.002-07:00

They let me go last night (2106 CST)...Free at last