Merry Christmas, Happy Holidays & Seasons Greetings

Merry Christmas, Happy Holidays & Seasons Greetings.

PET scan results

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:

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

PET Scan in the Morn

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???)

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

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)

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

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

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)

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

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)

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

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

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

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

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)

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

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

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

Return to Work

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

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.