Pre---Dallas Morning News Article

Nothing much to report today, just a heads up about an article that will be posted on tomorrow. The article will run in the Dallas Morning News a Dallas, TX area paper. The focus of the article is on people that are unconventional cancer patients, I save cancer heroes or better yet cancer warriors that are battling or have battled a cancer you would have never anticipated them having.

Enjoy the article on tomorrow, learn something, question everything, and fight become your own patient advocate for your medical health at ALL of your doctors appointments.

News Article (Cigarette Company Paid for Lung Cancer Study)

A link to the story can be found below: the title is Cigarette Company Paid for Lung Cancer Study

http://www.nytimes.com/2008/03/26/health/research/26lung.html

“Janet Sims’ Transplant Fund”

Have A Heart Campaign

Mrs. Sims, a 40 year old mother of 3, has a disease called Sarcoidosis, she had a successful double lung an heart transplant in February of 2007. Two months shy of her annual post transplant operation, her lungs went into chronic rejection and she had to be relisted for another transplant. The second operation was a success also. Now Mrs. Sims begins her road to recovery, thanking God for another chance at life. It is our hope and desire that you would assist us in with your donations to this worthy cause and to this valiant woman of God who has committed her life to God.

What is Sarcoidosis?

Sarcoidosis involves inflammation that produces tiny lumps of cells called granulomas in various organs of the body. These granulomas can grow and clump together in an organ and affect how the organ functions. It usually affects the lungs, lymph nodes in the chest cavity, skin, eyes and liver.

The Expense of Aftercare

Janet is currently hospitalized at Stanford University Medical Center recovering from her second transplant. She will be required to live in the Stanford/San Jose California area for extensive outpatient medical care after the transplant for a minimum of three to four months.
Her husband Mr. Sims will be her caregiver for her aftercare and will have to undergo training to learn how to assist Mrs. Sims. This will require him to temporarily relocate to the Stanford area to care for his wife and take on the expense of maintaining to places of residences, Nevada and California The cost of transportation for her, her husband and her family, housing, expensive medications, food and other necessities is estimated to reach at least $30,000.

Our Commitment to You and Mrs. Sims
Rest assured that 100% of your donation will be used exclusively for Mrs. Sims’ care during this catastrophic illness. Our prayer is that your generosity will be restored to you 100 times and that God’s will richly bless you with all that you have need of. Please keep The Sims family in your prayers as they trust God through this difficult time.

Thank you in advance for your loving kindness. God Bless You,
Seglinda Chaney, Fund Trustee and Friend of Mrs. Janet SimsMake a donation

Visit any Wells Fargo bank and contribute to the “Janet Sims’ Transplant Fund”
Account # 2296701622
Routing # 321270742
Make checks payable to: Janet Sims Transplant Fund.
By Mail: Janet Sims
6223 E. Sahara Ave. Sp.155

Annual Transplant Exam (PaperWork)

I received my paperwork today, containing my schedule for my annual transplant evaluation. The paperwork consisted of various appointments I would have with the transplant doctors, other specialist, and a little surprise.

Transplant doctors related appointments:
Day 1:
First and foremost staving NPO (no food or water) from midnight the night before my first appointment until after my bronchcoscopy at 1400 on Thursday 4/10/08; 2 to 3 hours after the procedure. If you are counting that is about 17 to 18 hours because you really can’t eat until 1600 to 1700; a long time without food.

Blood work
Abdominal / Aorta ultrasound
Chest X-Ray / CT Scan
Bone Density Scan
Bronch (Biopsy and wash of lungs)

Day 2:
NPO (no food or water/drink) after midnight.
Barium swallow (chest and abdomen) X-Ray
PFT’s (pulmonary function test), 6 minute walk


Other doctors / medical specialist:
Dermatologist
Dentist / Orthodontist
Eye Exam (check for glaucoma, Cataracts, CMV and Retinitis)
Prostate Exam (this test might not take place for the obvious reasons i.e. male ego at play here need I say more)

The Little Surprise:
Had a little package included with the schedule that the hospital sent to me to have another test/cancer screen done. In an effort to keep this story short, sweet and maintain my journalistic integrity as a professional (ha ha ha) I am supposed to capture my fecal matter for a colorectal cancer screen over three days. The funny thing is I didn’t receive any glove, mask, or hasmat suits to collect this SH*T I mean stuff and mail it back. I guess the post office is a logistical marvel as they do move a lot of SH*T.

I worked Out Yesterday.... and it hurt

My first real workout since the transplant 1 year and 1 week ago.

I link to the photographers (William DeShazer) blogsite that took pictures of my workout

http://www.willdeshazer.com/blog/2008/03/14/horses-and-heroes/

I am back, or almost back.... the extremely long road to recovery and the old me continues. I made it into the gym (http://www.ryanymcafw.org/) Ryan Family YMCA yesterday. My workout was not that long and I did not hit the big boy weights, I just worked on resistance machines to retrain my muscles and get my old form back; I hope to graduate and move on to the weight room in about a month or two. I also was able to jump rope for about a minute and a half (even with bad feet neuropathy) no pain no gain; as Coach Bras. used to say at WSSU "Go hard or Go Home". I realized that I have a mountain to climb to get back to the physical level that I was once at, it is going to take alot of work, simply put I am going to have to pay the price with blood, sweet, and tears.

Note: the ab wheel really hurts your chest after having it cracked/sawed open. I used to be able to do this, I was first introduced to the ab wheel in 1992..... am I that old now that was 16 years ago.

Another BAC has made the list

Hello Lung Cancer folks and Heart/Lung Transplant folks, we got some good news today. Bo has been put on the list at Duke (he is pulling for UNC go Heels so you know he is very smart) go to his website and wish Bo and his family well on this journey. http://bovsbac.blogspot.com/

Graduation Video (SMU Dec. '07)

I figured out how to put the video on the blog, I THINK (this video was extracted from the SMU video news Library http://www.smu.edu/flashvideo/?id=162)

Excerpts from the graduation ceremony December 2008 at SMU's Moody Coliseum; with remarks made by President R. Gerald Turner and Provost Paul Ludden (this video was extracted from the SMU video news Library http://www.smu.edu/flashvideo/?id=162)

“Travel Happy”, “Travel Happy”, “Travel Happy”, “Travel Happy”

Follow-up from doc. apt. on Monday

I saw the Neurologists yesterday and we butted heads as I told her that I only took the Cymbalta for my neuropathy one day and the side effects sucked. When we parted it was suggested that I try some cream to help numb the feet, I said I would give it a try; but for the most part I am going to just push through the pain.

One Year and Counting

Today marks one year since my transplant.



Flashback on March 5, 2007:

• Woke up and worked Telecommuting from my apartment (I did not go to the Palo Alto, or Sunnyvale site on that day).


• At about 3PM was able to knock off work and head over to Stanford to pick-up some Paperwork at the hospital, and have lunch in the cafeteria (a very good lunch from the hospital grill that I was mad they would have to get out of my stomach before the transplant was to take place.) Grilled chicken wrap, Strawberry Milk, fresh fruit salad, bottle of water.


• About 3:30 I finished eating so with my paperwork in hand I went over to the cancer center to use the computers, and print out some puzzles and word searches for the recent heart/lung transplant patients (puzzles help with manual dexterity, and mental focus as your body adjust to all the medicine you are on).


• Still in the cancer center at the library printing when my pager went off, at about 5:00PM PST as I was multi-tasking (blogging, e-mail, printing puzzles http://www.krazydad.com/puzzles/, and researching cancer). I ignored it as I had gotten some false pages when someones fax machine had gotten a hold of my pager number; once I noticed it was a hospital number I called it back and the surgeon said "Jerrold this is Dr. ****** we have some lungs you need to get to the hospital"; I said ok I will see you in four hours even though I was right across the street I had stuff I needed to do before I was to be out of commission for a few weeks. (I needed to clean my apartment, I had no clean clothes it was laundry night, needed to pay bills, I needed to set out maps and parking tokens for my wife to get back and forth to the hospital). In the end I was advised not to leave the hospital so I went and delivered the puzzles and parked my truck at the home hospital apartments across from Stanford hospital, caught a ride to the hospital which was across the street.
• From 5:05 - 6:00PM made calls to (my landlord, wife, folks, brothers, Pastor, manager, cancer friends in California, and transplant buds in California)... I walked into the hospital upright and ready for whatever.
• At 6:00 PM the wait began I was in the put in a room to do blood work, get hooked up to my IV, shower, and get ready for the operation. I was told that the surgeon was tired and was going to take a nap before the surgery so I said sleep was good and the transplant was scheduled for midnight...... waiting
• While waiting Sharon and Justin (cancer buds from California) visited with me, then my Godmother made it down from Sacramento, and my wife would eventually make it in right before the transplant at about 11:30PM. ..... back tracking to kill time I got on the computer at the nurses station and blogged, paid bills, and sent e-mails.

Tomorrow marks one year

Tomorrow I will celebrate my one year anniversary of being cancer free, and having a bi-lateral lung transplant (double lung transplant). This has been a long year with many peeks and valleys but as I reflect on the past days, weeks, months I can’t complain because I am still upright vertical and breathing.

Lung Cancer Advocacy Summit

The purpose of the Lung Cancer Advocacy Summit is to provide training and guidance to advocates for how to effect change at a grass-roots level. The summit will consist of teaching workshops, interactive sessions, networking, and small-group discussions. The workshops will be lead by health and research professionals, media trainers, and advocacy trainers. The topics that will be discussed include: understanding lung cancer, how to be your own health advocate, becoming a lung cancer consumer reviewer, how to de-stigmatize the disease, raising lung cancer awareness in your community, and how to navigate the legislative process.

To download the agenda (.pdf format) click here.
In order to facilitate constructive interaction among participants, we are limiting attendance to 50 grass-roots lung cancer advocates.

To download the application (.pdf format) click here.
The application deadline is March 20, 2008
Applications are sought from diverse members of the lung cancer advocacy community, regardless of experience or “allegiance” to any given organization. We have assembled a core group of lung cancer survivors and advocates who will review the applications and choose the participants.

Two nights of hotel accommodations and up to $500 in transportation costs will be provided to participants accepted to the summit. All meals during the summit will be provided.

Lung Cancer Advocacy Summit Affiliate Partners:

The Beverly Fund

Bonnie J. Addario Lung Cancer Foundation

CancerCare

Joan’s Legacy

Lung Cancer Alliance

LUNGevity Foundation

National Coalition for Cancer Survivorship

Prevent Cancer Foundation

Respiratory Health Association of Metro Chicago

Thomas G. Labrecque Foundation

Am I catching a cold or what???

Felling a little bit of on sniffles coming on. Am I catching a cold or what? A cold or any type of bug is not good for a transplant / cancer (former cancer) patient. I have learned that a cold or sniffles are like one way tickets, only this is a ticket to the hospital without a known return date, frankly I am tired of hospital. I have a streak going and want to keep it alive.... I have not been back to the Spa (aka the hospital) since my brief vacation after Thanksgiving '07.

Yesterday, was Hell

Yesterday was Hell to get through as I was trying a new medicine to help with my neuropathy. The medicine was Cymbalta and it is/was to help with my neuropathy as I stated before, the side effects I experienced after one day were more than I want to deal with on a daily basis. I will just grin and bear my neuropathy and just fight through the pain as I start to work out. On the Cymbalta I felt sluggish, my legs were gone, and my stomach was uneasy too. I fell better now.

One thing I have noticed recently and would feel like I am doing a disservice to everyone that works if I don't comment on the fact that if you work and are sick stay home, don't spread the wealth of germs you have built up within your body, work will always be there; if you don't take care of you and your health who will?????

Wheeee I am off of my soapbox now. Thanks for letting me get that off my chest, I may have to revisit this soapbox again so be forewarned.