Wednesday, December 31, 2014

Looking forward to 2015

Sand Hills, Nebraska
Long silence, I know. Life has been good - physically, mentally, emotionally. A person can't ask for
more than that. Dear husband and I have been together now for over 30 years (and still like to ride in the car together, even when it is a Mini Sport!). Celebrated anniversary and holidays with the kids - they have grown up to be fine adults, everything their parents could wish for. Extended family is doing well. Work is changing in exciting ways - retirements, new hires, more opportunities to serve the great educators, clinicians and researchers at the finest medical center in the world (how lucky can a person be?!).

Thanks for the great service, Justin!
Even though we lost Cheeky during the spring trip to the west coast, thanks to Justin at Performance Toyota in LaVista, NE, we have not one but two new cars in the garage this winter. We have had some great travels in both cars so far, and looking forward to many more.


I am amazed daily that I have the life that I live, after all that took place in 2006. No matter what takes place each day, that is at the top of my mind when I pause at night, and when I rise in the morning. I have been anticipating 2015 - this is the year that my photo comes out of the time capsule, when the New Horizons craft reaches Pluto. I can remember wondering if I would be here to witness the time capsule being opened... and the way it looks, I will be!

@Lauritzen Gardens, 2014
I wish for everyone a great new year ahead, full of smiles, adventures, connections to the people and the activities you love, with sun in your face and wind in your
hair.


Monday, September 15, 2014

Days Since

from my Dreamdays app
It has been 3000 days since I was diagnosed with Adenoid Cystic Carcinoma. There has been a lot of life in those 3000 days: the world has turned, children have reached adulthood, relationship with my dear husband has deepened, renewed and strengthened connections to friends and family, said farewell to friends and family that have died before me, watched as 8 years worth of health professionals graduated to their next level, watched sunrises and sunsets... I think you get the gist.
I don't generally count the days. It has been great counting years (8 and growing) and looking forward to counting by decades soon. I do wonder though, why I have been able to see 6000 sunrises and sunsets, while others with this crappy cancer didn't, even though we went through similar treatment protocols. There is just too much not yet known about cancer in general and adenoid cystic carcinoma in particular. I will continue to save money as if I was going to live to be 100 (according to Dreamdays, only a mere 17,000 days to go), and look forward to retirement (approximately 5300 days left.) I don't have a clue as to when my last day here will be. Until it arrives, I want to embrace this life for all its worth. Here's to future adventures that will no doubt be recorded on these pages.

Sunday, September 07, 2014

Saw this CNN post-had to comment: "My cancer is worse than your cancer?"

Thanks to Geraldine Moriba for both the article (http://www.cnn.com/2014/09/05/opinion/moriba-my-cancer-your-cancer/) and the upcoming documentary called "Until 20". She had sarcoma, which she survived. In the article, she mentions having "survivor's guilt":

"This is the guilt that can occur when someone survives a traumatic event that others do not, such as accidents, war, natural disasters and even illnesses like cancer. Guilt is
Me in Germany in 1985
a complicated emotion."



This is  something I too have experienced, especially after noting the deaths of so many of my fellow Adenoid Cystic Carcinoma wearers, while I keep on keeping on. Her words that spoke to me the most though:

"I have no patience with "my cancer is worse than your cancer" conversations. Cancer is not a competition. Cancer causes us all pain, and having a rare cancer is exponentially devastating, because there is so little research being done. The only remedy is banding together to create awareness and pushing for research funding."

Thank you for your words, Ms. Moriba, and for continuing to find purpose in your experience. And my forever thanks go to those that raise money for the research into stopping my own personal rare cancer. Some of them I have learned about and shared before (let me know additional ones you learn about, please):

Live Like Andi Foundation http://livelikeandi.org/

Adenoid Cystic Carcinoma Research Foundation http://www.accrf.org/

Attack ACC http://www.attackacc.org/

Sunday, June 29, 2014

8 Years Since Adenoid Cystic Carcinoma Diagnosis, and Still Going Strong

Some days, it doesn't seem that long. Other days, the day I received the diagnosis from my surgeon seems an eternity away. My heart sends thanks to all you who have supported me on this path I did not ask for, and offer my support to others that walk the path beside me. 

I am grateful for all opportunities that I once thought would have been taken from me: seeing the love in my husband's eyes when I catch him looking at me; witnessing my daughter's graduation from college; watching my son grow into the great man I knew he would be; following my mom's and brother's  adventures of moving into new homes; sharing joy with my friends as they welcome their grandkids; cheering my colleagues on as they retire and begin their lives over again;  and in my role as medical librarian, supporting those researching cancer as well as other diseases and conditions at the medical center.

Someone asked me recently what the hardest part has been lately, since I am not currently undergoing active treatment. My answer doesn't have much to do with having cancer - I think it is pretty much shared by all humans: the hardest part of living is having friends and loved ones die. 

Sunday, June 08, 2014

Cheeky - an open letter of gratitude to the CEO of Toyota Motors

(Posted here since I have not yet been able to locate a direct address for Mr. Toyoda.)


As a member of a long-time Toyota owning family, I want to thank you and your expert professionals on creating the wonderful car that was in our family until an accident took her from us on May 22, 2014. Even though the loss of the car was traumatic, all of the Toyota professionals we came in contact with reminded us why we owned Toyota cars in the first place: the people and the machinery are the highest quality all around!

In 2008, after living through head & neck radiation and two surgeries to treat cancer, my husband joined me in celebrating life by buying a 2008 5.0 Release Series Scion xB from Dennis Gormley at the Performance Toyota/Scion (http://toyotaoflincoln.com/) of Lincoln, Nebraska. We named her Cheeky, to go along with my nickname of the Cheeky Librarian. The Scion xB fit our family perfectly - it came with a factory-installed sun roof, it came with a manual transmission, and the tall men in my family could easily sit in the front and back with no space problem. No matter how bad a day was, I knew I could walk out of work or home and have a big smile when I saw Cheeky parked, ready and waiting for adventures. She was her own parade. I wrote about some of the adventures over the years on my blog (http://cheekylibrarian.blogspot.com), and posted photos on my Flickr account (https://www.flickr.com/photos/bibliotek/).Driving a Scion is never boring - it's the most fun a person can have in traffic. 

My husband and I decided on a driving trip to celebrate our 30th anniversary, and headed for the Pacific coast. We drove through Kansas, New Mexico, Arizona, and California to reach Pacific Coast Highway 1. For 6 days, we drove up and down the coast between Cambria and Marina, playing in the surf and taking lots of photos of ourselves and yes, the car. On 7th day, we forced ourselves away from the beautiful coast to begin the trip back to Omaha, driving through California and Nevada for the first leg of the trip. East of Reno, traffic was stopped due to something in the highway. As we sat stopped, waiting for traffic to clear, we heard the sound of hard-braking tires. My husband said, 'Hang on!', and then the crash. Someone had driven on the shoulder around the stopped traffic, couldn't stop, pulled their parking brake which put them in a spin at 50mph and right up against Cheeky's rear bumper. To say there was a lot of damage is an understatement, but neither my husband nor myself had injuries - your safety engineers earned every bit of their wages. That car did exactly what it was designed to do - absorb the impact and keep those in the passenger compartment as safe as possible.


We had the car towed to the Reno Toyota dealership for evaluation. A man there told us to take it to the Dolan Lexus Autogroup (http://www.dolanautogroup.com/index.htm), since that was where body work was done. It was late evening (around 7:30pm) when the tow truck dropped us and Cheeky off in the lot. Ginger Kraus, salesperson for Dolan Lexus was getting off work, but insisted on taking my husband and me (and all of the contents of Cheeky, since the windows were broken out) to a motel so we could rest and recover. We saw Reagan Riveria, the Service Manager,  the next day and learned that there would be no fixing Cheeky - the damages were just too extensive. We drove away in a rental car, discussing our options all the way back home (which was still 1450 miles away). 

We have loved the Toyota brand since my husband bought a Toyota Starlet in 1981 (that car saw over 300,000 miles on it before the floor gave way - the engine was still purring along). We even owned an American-specs Toyota Corolla station wagon while stationed in Germany in 1987. The 2008 Scion xB, while aimed at demographics younger than our age group, fit all of our wishes and made us feel like kids again. We knew we wanted another one, so I contacted Justin Polland of Performance Toyota of La Vista (http://www.toyotaoflavista.com/index.htm) to find out what the 10.0 Release Series would be for 2014. Justin had to give me the bad news that the 10.0 Release doesn't have a sun roof nor does it come with a manual transmission. Despite those disappointments, we ordered a regular blue Scion xB (with manual transmission, but no sun roof), and expect to get it in July. We needed a car right away, so Justin was able to locate a 2014 Yaris LE, which we bought and are happily driving until we get the Scion xB to play with. The new xB won't be Cheeky - that was a once-in-a-lifetime car for me. But I look forward to getting the new regular Scion xB. Health professionals say that a cancer patient's state of mind is as important as medicine when it comes to healing. As an 8 year cancer survivor (and now major highway accident survivor, too!), I want to thank you and your wonderful Toyota professionals on putting me in a great state of mind daily since February 2008. 

Friday, February 28, 2014

February update

Rainbow on the 1st of November
No big personal news, just checking in. Enjoying the good life here in Omaha. Taking photos daily (it is like I am proving I am still present in the scheme of things!) Finding value every minute at work (our students, faculty, staff, and citizens are the best!) Family is doing well. All of this despite being in the coldest winter anyone can remember for quite a while (I am looking for a head transplant - some days, the cold brings on pain that is just...)

Sending all good wishes to those who wear or have worn cancer, and their wonderful supporters and caregivers (professional and otherwise). Here's to some warmer weather, somewhere, for us all.

Sunday, January 12, 2014

Catching up

Cheeky in the sunset
Cheekymobile on New Year's Eve 2013

So 2014 has been around a couple of weeks, and seems to be behaving itself for the most part, at least for me and mine. To review:

1) Moment of irony - my baby brother (ok, only a year and half younger than I) had to get his first of two cataract surgeries this week, yet I am the one they watch for cataracts due to the radiation I received in 2006! Once again, this illustrates that all that is watched for in cancer patients is not necessarily what is found. Little brother is doing fine, mostly thanks to his wonderful wife and excellent eye surgeon (plus, he is made of the same sturdy stuff that I am, after all!)

2) Spring travel plans are being made to celebrate 30 years of being married to a wonderful guy. All we know at this time: it will involve the ocean in some form. Past that, we are still figuring it out.

3) I didn't make any resolutions, so I don't have any report on keeping or breaking same.

4) Still using Mention.net to monitor news information about Adenoid Cystic Carcinoma. I will post recent news next.

5) Family, friends, and fellow ACC wearers seem to be doing pretty well at the moment. It is really great to just catch up and talk, leaving the big C off in the corner where it deserves to be. 

Wednesday, January 01, 2014

Farewell to a great ACC wearer and leader of cancer survivors

Alicia Almanza passed away on Christmas. Her funeral was on Tuesday - here is the announcement from the funeral home (I think the acronyms are - CPD for Chicago Police Department, CFD for Chicago Fire Department) . You can read about Alicia's story and learn more about her organization's fund-raising efforts at this site: http://attackacc.org/ .

On the Adenoid Cystic Facebook site, the family posted this request: "...one simple request for anyone who was touched by my sister Alicia.
Please jot down a favorite memory of Alicia or simply how she inspired you in your life. There will be a box at Alicia's services for memories to be added. Next Christmas, our family will open your personalized notes in celebration of Alicia's life. Together we will reminisce about the amazing gal who changed us all in such a beautiful way!

Personal messages can also be mailed to:

Alicia Almanza
C/O Loving Leedy
PO Box 557983
Chgo IL 60655

Please share this message and thank you for all the love and support showered upon our family."
 
Who links to my website?