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.

what I've learned

The following is taken from an e-mail a friend from under Grad. sent to me the other day, thanks D.

'A good friend will come bail you out of jail
But a true friend will be sitting next to you saying
WE screwed up, but we had fun! '
Proud to be your Friend!

I've learned...that life is like a roll of toilet paper.
The closer it gets to the end, the faster it goes.
I've learned...that we should be glad God doesn't give us everything we ask for.
I've learned...that money doesn't buy class.
I've learned...that it's those small daily happenings that make life so spectacular.
I've learned...that under everyone's hard shell is someone who wants to be appreciated and loved.
I've learned...that the Lord didn't do it all in one day. What makes me think I can?
I've learned...that to ignore the facts does not change the facts.
I've learned...that the less time I have to work, the more things I get done.

Doc. visit follow-up

I had a pretty good doctor’s visit yesterday, it was just so long. I got in two naps, went through two playlist (15 or more songs each) on my IPod, heard 3 speeches on the IPod, and watched an hours worth of Barney on TV. The Barney part is funny as I was told I could turn away from that channel after the lady with the small child left the waiting area; the only thing is that I am immune to children’s programs I can watch hours of the stuff without a second thought (my daughters have trained me well). By the way my new favorite children’s show is Word World.


Sorry for the tangent above. The doctor’s visit (Lung transplant side of the house) went well; all test and test results were fine this month. My blood work looked good, the X-Ray was clear, and my spirometry is up (FVC is 82% and FEV1 is 84%) I am not at 100% but I hope to get there as the cold and flu season passes I will be able to hit the gym without too many fears which will strengthen my lungs, and build my body up again. I am able to stop some of the meds that I have been on since transplant as I am quickly approaching my first anniversary (3/6/07). The doctors did notice a slight rub when listening to my lungs on the right side around the rib cage, I think it is just scar tissue, I happen to have a lot of scar tissue.

That’s all for now.

Another BAC has been transplanted

Another member of the lung cancer family, a BAC has been transplanted, the operation took place several weeks ago and from what I hear the new transplant family member is doing well. Good luck, e-mail / call if you have any questions that I can answer.

Doc Visit in the Morn.

I have my monthly visit with the Lung Transplant Docs. at UT SouthWestern in the morn. I hope all goes well, I am a little worried about my spirometry test as I am coughing (as always) up a little bit of crude. We shall see how it goes in the morn.

Sat. in LA (West Side)

Phyllis (heart and bi-latteral lung txp Jan. 07) and me (bi-lateral lung txp Mar. 07)
Picture taken in LA, CA after lunch before I hop on my 3hour plane ride.

Cowtown Preview / Lung Cancer Conference

Good Luck in the Cowtown tomorrow Jan, your first Ultra; also good luck Ben as you compete in the Ultra tomorrow.


I am learning alot about LC (lung cancer) during the various presentations at this conference. One thing that seems to stick out to me is that research and attempts at finding a cure are grossly under funded as more than 80% of the funding for research comes from govt. agencies. LC is not a smoker’s disease it affects all of us and cripples the communities it is embedded in.

Lung Cancer is a National Crime

Lung cancer is a national crime, a national health epidemic. Statistically lung cancer kills more people/patients annually when compared to all of the other cancer(s) combined. Lung Cancer is not politically in vogue like the other cancer that society and of course our elected officials rally behind. Lung cancer will always be the #1 cancer killer until govt. and industry support research that will curb the epidemic that is lung cancer. It does no good to have funds established for programs that help lung cancer patients deal with the cancer (lung cancer) while we are going through treatment for the disease, use that money to find a cure up front and you won't need to ease your conscious by pampering lung cancer patients when we are ailing.

Bonnie J. Addario will be on Nancy Grace
Tune in to “Nancy Grace” on Monday, February 25, 20088pm ET / 5pm PT on HEADLINE NEWS“Nancy Grace” is television’s only justice themed/interview/debate show, designed for those interested in the justice story of the day. Bonnie J. Addario and Board member Deborah Morosini, MD will discuss Lung Cancer

http://www.thelungcancerfoundation.org Bonnie J. Addario

http://www.cnn.com/CNN/Programs/nancy.grace/ Nancy Grace

Lung Cancer Winter SPORE

(I am in very cold Santa Monica right now attending the LC Winter SPORE meetings. I hope that I will be able to effect change and contribute in some small way so that we can change the data, and perception of lung cancer.

I am also nervous b/c the last time I checked UNOS (The United Network for Organ Sharing) http://www.unos.org/ the website only showed two BAC lung cancer patients listed nationwide waiting for a transplant; I am hoping to see that number increase to 3 or 4 soon maybe, possibly.....

There is always HOPE; you can live dying or dye living....

Lung Cancer on YouTube & the Lung Cancer Alliance

The following video was downloaded from the Lung Cancer Alliance website. There are also 5 more PSA (public service announcements) on the site or, you can find them on YouTube (use lung cancer as your search query word) http://youtube.com/ or you can just use this link http://youtube.com/results?search_query=lung+cancer&search_type=/

http://www.lungcanceralliance.org/

More videos from the Lung Cancer Alliance website.

http://www.lungcanceralliance.org/features/youtube.html

Donor Family Letter

I finally composed an appropriate set of words to introduce myself, say thank-you, and give my condolences to my donor’s family for their loss. I hope to build a relationship with the family so they will see their loved one lives within me.

Day 2 (Mr. Mom/ Mr. Dad)

Day two was uneventful, Ravyn has messed her hair up playing all day; so I am either going to attempt to do it the best I can or pull out my clippers ..... and tell my wife she got a hold of some chewing gum.......

Update, I did her hair it looks okay you can tell my wife did not do it, she can't go all week with my handy work so Aunt Pat is going to help me with their hair this week.

3 more days until my better half returns home

Medication List

Some of the meds I take or have taken or you can expect to take post-transplant.

Medication
Prograf (Tacrolimus)
Cellcept (Mycophenolate)
Prednisone
Lasik (Furosemide)
Potassium (Slow-K OR K DUR)
Magnesium (Magnesium plus protein)
Oscal D (Calcium + Vitamin D)
Mycelex (Clotrimazole)
Bactrim (Septra); (SMZ-TMP); (Cotrimoxazole)
Nexium
Colace (Docusate Sodium)
Sporanox (Itraconazole)
Folic Acid
Valcyte (Valganciclovir)
Iron (Ferrous Sulfate)
Aredia (Pamidronate)
Reglan (Metoclopramide)
Vicodin (Hydrocodone/ Acetaminophen)
Metoprolol (lopressor)
Ambien
Warfin
Ondansetron
Starlix
Lidoderm Patches

Visit with the TCEQ

Got to visit with the TCEQ family today, and talk openly about Lung Cancer and Organ donation. I hope that I was a little entertaining. I also took the opportunity to thank them for the support they have been and continue to be to my wife and the entire family. I was also there to help Jan as she prepares to run her first Ultra marathon (2/23/08 The Cowtown) she is raising money to donate to the family, while using my story / my family’s story as motivation. I hope our story helps to cover the long tough race ahead of her.

In closing Jan will be fine the first ultra is always the toughest (like I have run one, maybe in the future once I can feel my feet)

Good Luck Jan and the rest of the Fort Worth Runners Club members
http://www.fwrunners.org/

Thanks again TCEQ for allowing to ramble on with some good information and some information that was TMI

This is also Day1 of living like a bachelor since my wife is out of town on business, the girls and I have made it so far, their hair still looks good, they have had healthy meals today, all is peaceful so far.

Neuro Optomolgist

I can see clearly now, I got the all clear from the Neuro Optomologist as I had to get my eyes checked. One of many things you must keep an eye (no pun intended) on after transplant because of diabetic concerns, cataracts, glaucoma, CMV.....

Next eye check-up will be in 6 months.

The mighty have fallen

On Saturday in between watching my daughter’s double-header basketball game(s), my younger daughter and I went out and played on the playground. While playing I decided to do some pull-ups a task I used to do with ease before LC (lung cancer). I couldn't do one pull-up, the mighty have fallen..... I have my work cut out for me ...... I have some / alot of work to do.

The other Woman

Post football/Super bowl blues..... did you really think there was another woman.... I am going through my post football blues. It seems like every February as we get closer to Valentines Day football breaks my heart and leaves me ...... (fill in the blank for yourself).

Old Material from the Dec. 2007 SMU Graduation

I just learned a new trick with the computer and blogin' so I figured I would make a video of the radio commentary from Ellie and the pictures taken by Rie.

The commentary was provide by

Ellie Hogue; Reporter, WBAP News/Talk 820

The pictures were provided by

Rie Watts; Executive Masters Program, School of Engineering.

DFW walk bio

posted on the http://www.dfwwalk.com/ website

Greetings fellow cancer saviors, loved ones, and support persons. My name is Jerrold Dash and I am a two year survivor of Lung Cancer; terminal lung cancer stage 4 BAC (Bronchioloalveolar Carcinoma).

To say I was shocked, surprised, and blind sided by my diagnosis would be an understatement. I exhibited symptoms for several years before my diagnosis February 1, 2006, but these symptoms were classified as bronchitis, asthma, allergies, and pneumonia. I never expected to be diagnosed with lung cancer being a former collage athlete and non-smoker (50% of all people diagnosed with lung cancer never smoked).

Upon diagnosis I had no choice but to fight as anyone else in my situation would have done. I was told by my temporary oncologist that I could not beat cancer and he would treat me palatively with chemotherapy until I died from the cancer. Fortunately for me I had a pulmonary specialist that was sympathetic and could relate to my situation being a young professional raising a family. I was 32 years old when I was diagnosed and my daughters were 2 and a half and 3 weeks old respectively (I will not reveal my wife’s age).

I endued as much chemo as I could stand, participating in a few clinical trials along the way while waiting for a miracle (a bi-lateral lung transplant). I must emphasis that transplant for someone with lung cancer is just not done, and insurance companies consider the procedure as experimental treatment. Fortunately I had a pulmonary specialist and doctors at Stanford that would not take no for an answer from the insurance company. I was approved by my insurance company to be evaluated to see if I could be a candidate for lung transplant, which I was. The problem with being a candidate for lung transplant is that you must be within 4 hours of the hospital performing the transplant at all times, so I packed up my truck in August of 2006 heading West to Palo Alto, CA not knowing anyone at all and leaving my wife and two young daughters behind in TX. After several months of waiting and hoping my cancer did not spread I got the page a pair of lungs was available and I was number one on the list, the surgeon informed me that I needed to get to the hospital right away. I informed him that I was already at the hospital (eating dinner in the cafeteria) and that I needed to clean my apartment before my wife and other care takers flew in and saw my messy bachelors pad.

In summation everything worked out for the best I got the transplant (March 2007), and have been working to recover physically ever since. I hope to start running a couple of miles per week starting in March 2008 (if I can get my neuropathy under control, chemo side effect). The best news is that I am cancer free since the transplant.

I think that quickly captures my story, as I am not much of a writer, if you want more details and pictures of my lungs go to my blog (cancer therapy). http://2newlungs.blogspot.com/


By Jerrold Dash

2 years and counting

Today marks two years since the correct diagnosis was made that I had BAC (Bronchioloalveolar Carcinoma). The past 24 months I hope have given hope to other BAC patients / lung cancer patients and caused the medical brain trust to rethink the outdated data they so heavily relied upon.

Time keeps ticking, I keep getting stronger, and medical data must be updated and reevaluated.