Quite a Few Weeks

Hi all,
Well the Nutcracker is over and is was fantastic. I got to see it three times! The first time was on Thursday during the special presentation for Oncology & Hematology patients and their families. Cathie Brown was tireless in her effort to make this show a success and safe for families to "come as they are" and she pulled it off. It was sold out and so amazing (it even made the local news http://www.ksby.com/Global/story.asp?s=9509359). Cathie personally cleaned and prepared the PAC (http://www.pacslo.org/) for the show...I am blessed to call her my friend. The Hearst Cancer Resource Center (see links) was instrumental in getting the tickets to all those who wanted to attend this free performance too. Meghan was beautiful as Clara and Katy was so killer in Snow, Ribbon Dance and Soldier...they continue to inspire me daily. Tommy and I survived as errand boys and Laura was on call to create or deliver all the necessary gifts and accoutrement's needed to pull this off. We love it and the music never gets old so it was labor of love for Laura and I.
On a sad note, my good friend Joel Schnackenberg passed away at the age of 48 after a hunting accident this past week. He was part of our Thursday afternoon men's group & bible study and I will miss him. He was so much fun to be around and his passing reminds me to live life each day with the peace that our Lord has everything in His control...not us. For those who knew Joel, I am sorry and please pray for the entire Schnackenberg family.
Recently, my docs and I have been busy figuring out lab issues and medications and so on. Bottom line, I am improving and have been given the green light to golf and surf. Too much rain lately, so I will wait until the ocean cleans up a little (I am a surfer at heart but not that stupid-ha ha) but the clubs are coming down and getting cleaned off ASAP. I will also be able to make a slow return to work in the next few months if my appts at Stanford go well in January and February. I feel a little uneasy as things began to turn the corner and realize this is a very common emotion for cancer patients. So much intervention, medication and appointments come into your life that when it begins to recede you feel a little lost. I've had to stop, take deep breaths and pray that this news was cool and it is OK to get better. So, I am trying to embrace this good news and enjoy the blessings of a Christmas with my family at home. Last Christmas was not good as many of you recall so waking up on the 25th with just Laura and my children will be my best present.
I am going to end with a quote from a book I read recently (it's from another dog book so humor me-I have moved on to other genres I promise)...enjoy the holidays everyone!

A person can learn a lot from a dog, even a loopy one like ours. Marley taught me about living each day with unbridled exuberance and joy, about seizing the moment and following your heart. He taught me to appreciate the simple things - a walk in the woods, a fresh snowfall, a nap in a shaft of winter sunlight. And as he grew old and achy, he taught me about optimism in the face of adversity. Mostly, he taught me about friendship and selflessness and, above all else, unwavering loyalty.
John Grogan, Marley and Me, 2005

Cold & Chicken Pox Season

Hi all,

Ok, first to recommendations...I just saw "Freedom Writers" on TV. Wow, what a great movie and true story right out of Long Beach, CA. Movie has been around for awhile but it was nice to rediscover it one afternoon.

Now to the crazy stuff-Meghan got Chicken Pox on Thanksgiving or around there. She had been vaccinated, thank goodness, so her suffering was little to none but lesions were present and confirmed by Laura & Kristi Logan (experienced nurses) so we started her on medication right away. I called my docs and confirmed my suspicions. I had to move out of the house for the duration of her illness (about 4-5 days) to the Brown's pool house. It was fun being a bachelor for a few days and the Browns are so awesome (l love that family) but as I discussed what medical interventions I should do with my doctors we all realized how many viruses I am exposed daily in my current compromised state that I don't even know the name of and calmness and common sense ensued (at least for the docs involved). The holiday weekend and insurance hassles had something to do with it too. Funny thing too-Katy was Clara in Nutcracker 3 years ago and on Thanksgiving contracted Chicken Pox! Strange goings on in the O'Neil household with infectious diseases:)

We did enjoy Thanksgiving dinner in blissful ignorance of circulating pox virus with Mom-Mom, Adam (cousin) and Karl (nephew). Nutcracker week starts now and then we will enjoy the slow days to Christmas. Tommy recovered great from his knee injury and is back to full activity. Finals, frugal shopping and reminding myself that last Christmas is not something I remember too clearly (I left hospital AMA to watch presents being opened & returned home sometime in Feb) so it makes this holiday season really special. I am stoked and grateful that the Lord continues to bless me with health, appreciation for simple things and the gift of life each day.

cGVHD is improving each day but I remain realistic that it is not gone away and will continue to challenge me for a very long time. Such is life and I try to stay "glass half full" in attitude but occasional pity parties are allowed I am told. We don't let it get in the way too much now.

Have a great holiday season and don't forget to say "Happy Birthday Jesus" on the 25th.

"Everything"

Another song title...this one is by Michael Buble. I thought I would include it as it is such a great song and can't help but make one smile. Our good friend, Aly, also introduced me to Mindy Smith and her songs. Try out "It's Amazing" by her...can't go wrong.


Calm waters right now as I am doing well and the predisone gets reduced each month. Any sign of cGVHD and my docs will find it and it all ends and we start over. But "waiting for the other shoe to drop" is really hard to pull off so I have tried to moved my blanket from under the tree full of shoes that is cancer and surviving it and placed my trust in the Lord and I relinquish control of all my life's valleys and mountaintops to Him. It is amazing to realize finally that the valleys are much wider and longer than the ground under your feet on the mountaintops. So as I travel through them toward the mountaintops, as we all do, I find comfort in the daily gifts and blessings. Recently, a local businessman was diagnosed with ALS (Lou Gehrig's Disease) at age 46. We all know him but as I felt it in my gut when I heard, I was again reminded of how life is so cool but so fragile. Dang! I guess these things get to me more now...must be the medications. I pretty much get misty during Disney films too...ha ha


OK in other news, we lost football playoffs and Tommy likely dislocated his knee cap but it will heal with 2-3 weeks of immobilization and physical therapy. He is tough and we are glad the season is over. Everyone else is doing great and we look forward to Thanksgiving and a quiet family Christmas.



Keep in touch.


Thanks for the thoughts and prayers


Rich

Nowhere to Go, Nowhere to Be

Hay all
Yes, that is the title of a Kenny Chesney song that is great to just chill too. But yesterday was anything but in sync with the lyrics of the song. We made a regular trip to Stanford (with rain 12 hours round trip) and visited with eye and BMT docs. Great visit with eye guy giving me the ok to continue my care locally as my eyes have improved since we started treatment. cGVHD and ALL are progressing nicely according to my BMT MD and we continue to monitor both closely as we all are in agreement regarding how serious both are and how quickly things can change. That being said, he did lower prednisone a little (yes!) and I am praying for continued resolution of my symptoms. My ALL at my age doesn't get the cure nod until 6-8 years out so I am fine with this and so thankful for each day (i know I am repeating that a lot but it's so true...sorry)

Laura is doing great and she is a saint now, officially, as many of you have already acknowledged:) No really she is the best and puts up with the many twists and turns I provide her with this battle. Tommy's team is in playoffs and Meghan and Katy are at Nutcracker rehearsal all the time. Don't forget to attend if you are local and there is a special performance just for oncology patients and their families on Thursday, December 11th prior to weekend performances.

Vote!
Remember how amazing our God is and treat each and everyone with respect and love...He does.
PS: it's OK to agree to disagree too:)

A Nice Walk

Hay all
Mango and I took a walk tonight and I can't tell you how nice it was to be in the cool air, quiet neighborhood and have the Fall breeze in my face right around sunset. 33 Miles song "One Life To Love" was flowing through my ears and filled my soul with good stuff. Dogs are great:)
Also, on the way to Laguna Middle School this morning with the kids all the horses in the area were talking to each other....pretty cool.
Tommy and I enjoyed the dvd "Where in the World is Osama Bin Laden" by the same guy who did Super Size Me (funny and interesting actually) and Laura and I saw FireProof at the theater (great date night movie but we stuck to less crowded matinee). Also, took Mom and Katy to the movie "The Secret Life of Bees" (warning-serious chick movie) and it was really an enoyable, nice movie...another date night recommendation I have to admit.
My relatives team, the Phillies, are in the World Series so they are excited.
So despite the grind of daily junk that creeps in to our/my life now, it was nice few days and I felt really blessed and fortunate so I decided to "spread the wealth" (sorry-couldn't resist so close to the 4th).
I hope you all enjoyed them too.
Rich
PS: Excuse me now while I go watch a few Gladiator clips.

Day by Day

Hay all

Well, this has been an up and down week but, overall, good news for my cGVHD. My eye specialist said I was getting much better and my BMT docs also said things are progressing nicely so each lowered my medications...I am on my way to a more slimmer trimmer facial profile. My PFT's or pulmonary function tests were also unchanged and if you would like to hear a great story of God's grace then ask me about my PFT's. It is slow progress as expected and my Stanford team said the best case scenario is it is all a bad memory is 12-15 months! The other scenarios are ok too so far but time period is obviously longer. I should follow the economic recovery almost to the month....ha ha Well, maybe not so funny to some I am sure. It is art treating this so I am patient, stay informed, ask questions and pray continuously.

My mom came for a short visit which was wonderful and Laura and I got to visit with Curt (see my links) while at our Stanford appts. He looks great and he is less than a month away from his 100 day BMT freedom ride.

Tommy's football team is doing great (won by 1 point last Saturday in last 2 minutes) and Katy and Meghan are busy with Nutcracker rehearsals (see my links again). Katy also gets her driver's license this week too....yah!

Don't forget to attend a performance on the weekend of December 13th and anyone you know who is battling cancer then the the specially prepared performance is for them. Call the Civic Ballet for time and info. On that same subject, the fundraiser at Salsbury Vineyards for the Special Oncology performance was a success and it was great to see everyone, break the rules for one night and chat it up with you all.

I am able to get out and exercise regularly despite the 100 degree weather here is SLO lately. Jeez, I am so ready for Fall! This is crazy. Ok Al G. we believe you...ha ha

Thanks for visiting the blog and don't forget to sign in and say hi.

Mango was feeling left out

Hay all
My Mom gave me a book recently written by Trixie Koontz, the dog of author Dean Koontz. The book is titled Bliss To You-Trixie's Guide To A Happy Life. He put Trixie, his Golden Retriever, who passed recently, as the primary author and all proceeds go to Canine Companion International (http://www.cci.org/).
It was a easy read and a very nice book that made you smile and laugh, especially if you are a dog owner. Another great book geared more for kids but our family laughed out loud reading it every time was Chewy Louie. My advise-get a dog and go get both books:)
Otherwise, I am doing ok adjusting to my new normal and my face gets rounder with Prednisone as the culprit. Meghan thinks I look more like Santa Clause everyday which made me laugh...good timing too as temporary cosmetic changes shouldn't really rank as high on my list as they do sometimes.
My Phillie relatives are up 1-0 and as a former San Diego native, any Dodger loss is a good one.
If you see me (and recognize me), say Hi and we can even shake or hug if you are feeling good-just don't tell my docs:)
Not much else to report but blogs are good for mundane and rambling too right?
Miss you all at work and hope to back in some capacity after the turn of the year.
Day by Day

Rich

PS: pictures up top are my Mango (pup & now) and bottom is Mocha in Maui & Elle in AZ, my sister's new Golden...and she is definitely the cutest:)

Nice Weekend Visit

Hay all
My sister and her daughter came to visit this past weekend joined by my Mom. We got to catch up, go to Tommy's football game and just hang out. She lives on Maui and misses her mainland family and was able to visit Cyndie in Sedona too (other sis). It rained here in SLO and it felt great to have a little weather and cold as we have had a pretty good Indian summer period so far. I continue to truck along with my this cGVHD stuff with no real changes to report. My eyes are improving according to my Optho doc and the weekly conference call on cGVHD out of the University of Michigan continues to provide me with some really great insight and info. Please pray for my friend John as he struggles through these first few weeks of his BMT. His blog is listed on my site.
It was so great to see you Beth and Emily and if my face gets any rounder from prednisone, I will have to steal political pundit, James Carville's nickname from him (Captain Cueball).
Halloweens coming-'cool'

Rich

Emily & Katy Beth & Emily Me & my future best man, Colin 1977

PS: Go Chargers...please!

One Year and Still Here

Hi All,

Many of you have received an email about my family starting this blog. I am new to blogging but this one is pretty user friendly so my first entry is to remind everyone that my diagnosis on October 19th, 2007 is approaching one year. To be honest, my BMT was on March 4th, 2008 so my "birthday" of one year will be in 2009 but being alive and with my family each day continues to be a gift I never take lightly.

My chronic Graft vs Host Disease (cGVHD) is stable and will be with me likely into the near future according to my docs and other resources I have investigated. The Stanford ophthalmologist keeps using the word "improving" at our visits each week and my BMT team specializes in cGVHD now so I am stoked about that...such a God thing:) Also, I have connected with a group that has allowed me to access resources and experts around the country if I wish to explore options and second opinions in the near future. Please don't hesitate to ask me if there is someone you know who needs this info or anything from me.

But for now, I continue to chug toxic medications, offsetting them with vitamins, shakes and a workout schedule that demands flexibility but keeps me somewhat limber (less limber also cGVHD side effect-jeez:( Laura has returned to work part time with Best Care as a mother-baby Home Health nurse. She loves those babies! Katy and Meghan are gearing up for their Nutcracker performance in December at the Cal Poly Performing Arts Center. Meghan is the lead part of Clara and she is awesome. Katy is an apprentice Company member and will be in many parts of Nutcracker too. Tommy is banging heads in SLO Youth Football and loving it.

Overall, we are stoked for each day together...so stoked! As I often do, I will end with a quote:

"Yesterday is already a dream and tomorrow is only a vision,

But today well lived makes every yesterday a dream of happiness,

and every tomorrow a vision of hope" Rick Hoyt