The Swine Flu

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

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

Happy to see another year pass.

Doctor Visit

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

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

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

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

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

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

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

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

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

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

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)

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

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

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

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

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

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

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

Breaking out of the spa today

I wouldn't feel right if I didn't bend the rules every once in awhile. No more chest tubes, no IV's right now, so I just went for a walk (without borders). I kept walking and walking and walking....

No more chest-tubes

My ladies have gone, so now I will raise hell in this hospital to mask the vacancy void that exists once again.

My last chest-tube was pulled today. Surprisingly it was not that bad as the previous chest-tubes that I had at other Spa institutions. Apparently they use a different technique here where they place the tubes through the skin and into the lungs in such a manner that the holes are not parallel to one another. No stitches, no pain, just take a deep breath and pull.

I feel bloated since the procedure.

I am now under the care of the post-transplant team and the oncology side of the house; surgery turned me over as they pulled the last tube out. Since the tube was pulled I can taste the rustic taste of blood in my mouth from belches,

SleepOver

My Spring Spa retreat lingers on. The chest-tubes are still in and still hurt.

Earlier this week while going to get a sonogram the sonogram person (I don’t know what you call them exactly) almost caused my tubes to be yanked out as she quickly and without any warning tried to lower my head. That crap (replace word if so desired) hurt like hell after about 30+ minutes of cussing I settled down let the procedure take place but come on you have to be kidding me is this how patients are treated everyday.?.?.? That was a story I told my ladies as they are here to visit with me and spend the night. The reason that I told this story to them (TWICE) was because Ravyn seems fascinated with my one remaining chest-tube (I got the other out just a little while ago) she wants to pull on it. Rhonda seems to want to trip over the IV cord hanging from my PICC Line and that is not good. I hope I survive their visit (with my health), like a young child with a pet they are going to love the life out of me.

Lung Surgery

Still stuck in the Spa (hospital) but getting burned out though....

I am still stuck in the hospital and raising hell (or getting my point across) while ensuring all those that are charged with my care, management, and recovering understand that we are in a partnership. My definition of a partnership for my current spa treatment is as follows:

I am a patient I demand that information be shared with me regardless of which side of the good news / bad news spectrum it falls on. Communication(s) are key to a good strong partnership.

I am not and will never be the textbook cancer, or transplant patient that most standard of care procedures were designed for.

Schedule treatment with me don’t just sashay your Crocs (another word can be substituted in the place of Crocs) into my room for whatever treatment you are there to give. Respect is a two-way street.

I really hoped to be out of the hospital by now, and I certainly never thought my chest-tubes would still be sticking out of my side.