Wednesday, March 29, 2017

#516 Not One More

Champagne Joy

Two deaths noted in less than a week on Facebook.  Unless you are friends or family or a metastatic sister you may not have heard the huge sucking sound as these brave tireless workers for the MBC cause left this earth.

I did not know them personally.  One need not physically meet any metster face to face to connect in some invisible way.  There is a tight bond that weaves us together.  When we read about another living and thriving "sister" ripped from us it follows with a punch in the stomach that leaves us dizzy and breathless.  Not fair, not fair!

They were both relentless fighters for more funding for MBC.  Champagne Joy ( love the name and the person behind it) shouted and screamed from the rooftops.  She founded the group #cancerland and was an outspoken member of our community.

Beth Calabatta was a swimmer, outstanding athlete and compassionate human being.  We had connected on several occasions to join forces to swim for MBC funding.  Unfortunately on my part it never worked out but I continued to follow her swimming escapades and fundraising techniques.  Actually, she was a outstanding swimmer and I might have been a bit intimidated by her strength and prowess in the water but that wasn't the reason we never met.  It was one of those moments you put off until the timing is right---which it never seemed to be--and now she is gone.  A lesson learned to do it today, not tomorrow, but now.  Read her latest blog entry for insight on this incredible woman,  Dying is about Living.

These are only two mentioned of the 791 who will die of metastatic breast cancer this week.  The names could go on and on.  Each person loved by many and lost forever.  Outrage! Where is the outrage?  Research must be a top priority on the national scene and our elected officials need to hear this from all of us.  It is our best hope to have more time with our families.   Funding for researchers is what we need.  We CAN NOT let one more person die without making that effort to give scientists more ammunition to tackle this disease.

As Champagne said, "I won't leave this earth until I see the beginnings of change." View her Facebook page and learn about this formidable woman  She began something the rest of us need to finish--finding a cure or at least making it a chronic disease before one more bright light goes out.

Today I am feeling saddened, vulnerable and pissed.  Wake up NIH, wake up NCI, wake up women and men who are all as susceptible as Champagne and Beth.  Cancer strikes and does not care about your social status, economic status, whatever status--help us because it may eventually benefit you or your loved ones.

Go to UW Carbone Cancer Center  and donate.  Let's make sure we are beginning the change for a cure.  Already donated?  Take action --please email your representative and senators-- and demand increased funding for NIH and NCI.  Do it today and then ask twenty friends to do the same.  Together we can make a difference.

Thanks for reading # 516 of 7777.

Monday, March 20, 2017

#515 Are We Crazy?

The old--stay tuned for the new.

To remodel the kitchen or not? That is the question floating through our house at the moment.  The problem isn't if it shouldn't be remodeled. It is a 25 year old kitchen with cupboards that were cheaply made and, after the passing of time, they are looking pretty rough around the edges.

Rob and I have been discussing this at length--invest in the house and enjoy the beautiful surroundings for many years or live with it as is until we are shuttled off to a retirement home.

What the elephant in the room isn't shouting is if I will be around to appreciate it for the next 10- 15 years or will this disease progress quickly and... well, it could get complicated.  We don't discuss that angle.  Instead we throw ideas back and forth on increased value of the home, owner benefits--all those "logistical" questions based on if we should proceed with this foolhardy idea; or could it actually be a valid move in the right direction?

The bottom line for me is will I be around X number of years to get MY value of out it?  Will the last knob get screwed in as I lie in the next room feeling screwed out of a longer life or will I be drinking my morning coffee reveling in a more efficient kitchen design for many more years?  Right now I'm feeling pretty confident of the latter scenario.

To do or not to do--always an unanswered question as we carefully proceed through life making decisions based often on financial advantages and not always taking in consideration our longevity.  My gut feeling is to bite the bullet and get it done.  For once I would love to look forward to opening that aggravating lazy susan cupboard and not have it collapse throwing the contents topsy turvy all over the floor.

Worth the risk of not enjoying it for an eternity?  Cancer takes another back seat on this one as my vote is yes; and I do believe I can convince the "best ever husband" the same.

Stay tuned for more home improvement adventures.  Oh, and by the way, to keep me sipping my coffee in the new kitchen, go to UW Carbone Cancer Center and donate.

Don't forget Our call to action:  As the health care legislation is presently working its way through Congress please email your representative and senators-- of our need for protection in health care affordability.  Do it today and then ask twenty friends to do the same.  Together we can make a difference.

Thanks for reading #515 of 7777.

Wednesday, March 15, 2017

#514 Don't Let A Road Block Your Way

A slight glitch of plans in the road.
Plans:  a method for achieving an end
b :  an often customary method of doing something :  procedurec :  a detailed formulation of a program of action
d :  goal,  aim

Plans. We make them, we organize them and we coordinate them; and sometimes they are altered on a whim or a catastrophe or for no apparent reason at all.  Having cancer often makes planning a precarious undertaking but can also be gratifying to help us look forward, onward; and the best is when our intentions are fulfilled.

Due to my continuing saga of health issues, our plans to Washington DC were on, and then possibly on hold, and then back on again.  I hate the uncertainty this disease renders me when my objective is to get from point A to B without interference.

A little help from friends gets us through every time.

Plan or not to plan? That is the million dollar (or plane ticket) question.  My conclusion--do it, get insurance if need be, use the cancer card to get out of things, whatever it takes-- just do it.  Cancer should not put life on hold waiting for the day when the body is motivated to cooperate.  It's stupid cancer, for crying out loud, and I for one will suck it up and keep planning and doing; or even repair a road with a few rocks and hardy friends, if need be (See the above picture), to get to my destination.

Phew! Live it up is my mantra so it is off to grand parenting duties in Seattle, family fun in Hawaii and anything else that might hit my fancy.  Time is a'wasting and those adventurous moments must be seized, cherished and above all, treasured.

With this short blog, you have plenty of time to go to UW Carbone Cancer Center and donate so all of us can fill our calendars with the luxury of carefree escapades.

Thanks for reading #514 of 7777.

Friday, March 10, 2017

#513 Voices Heard on the Hill

The two of us, Speaker Ryan and our son, David

Well it's over.  The much anticipated meetings with the big wigs on "The Hill" are in the history books and the verdict?  Time will tell but here's a brief recap of what transpired and how the day unfolded.

First of all, let me begin with a caveat about life as a metster and our days that are the feeling good, conquer the world kind of days; or the down right rotten ones-- leave me alone kind of day. We never know which one will present itself until our feet hit the floor.

Unfortunately for me the BIG day would have better spent in bed than traipsing across Washington DC but, alas, here we were and the stakes were too high to be a no show.  The morning began with a sleepless night due to my ongoing enemy--insomnia.  From there it continued to deteriorate into a long, and literally $hitty day (TMI- I won't go into details but nearly every bathroom was visited in both the House and Senate buildings). Oh, the joys of the side effects from medicines that are prolonging my life...

But I digress.

The morning meetings with the legislators went smoothly with their aides and Senator Baldwin indicating approval regarding more funding for research.  How could they contradict me as I described my limited time here and my mission on protecting my children and grandchild and all future generations from this ugly disease?

My final meeting was at the Capitol for a private session with Speaker Ryan. He agreed that supporting research and curing cancer must be a top priority in our country. I reminded him of the fact that we do not have the luxury of years or even months to wait for the debate on where to find the money.  I also informed him of his and our country's moral obligation to solve this "problem" quickly.

Was he listening?  He assured me this was an uppermost concern for him as he had a family member die of metastatic breast cancer.  I expressed my dismay that 600,000 Americans will die from cancer this year--many more than any terrorist attacks. He nodded in agreement.  Rob (the true genius behind all these meetings and best husband...ever) pointed out our concern of the present administration's beliefs on reducing the need for science and research. Ryan responded about being the ballast on the boat driving research forward and would not let that happen (No political comment from me).

One of the biggest concerns for the cancer community is what will happen to our health care and the financial toxicity that we face with this diagnosis. Again, I was assured that we will be protected (Really, I mean...REALLY?).

So, a successful experience or a bust?  The verdict is still out until we see NCI's funding increased and our health care becomes affordable.  Stay tuned.  With a brief 15 minutes of Speaker Ryan's time, the hope is my story and those of you who responded to my request for advice will prompt him and others on the Hill to do the right thing.

Thank you for all your positive vibes and good wishes.  My voice was one small whisper in everyone's ear but I am hoping it will resound into a chorus of shouts from all of us.

Our call to action:  As the health care legislation is presently working its way through Congress please email your representative and senators-- of our need for protection in health care affordability.  Do it today and then ask twenty friends to do the same.  Together we can make a difference.

Thanks for reading # 513 of 7777.

Tuesday, March 7, 2017

#512 The Update on My Big Date

The meeting is coming!  The meeting is coming!  In two days we will be in Washington DC convening with our legislators and Speaker Ryan speaking to them about metastatic breast cancer and all Stage IV cancers.  I will have the ear of the #3 person in the country and I don't want to blow it.  Pressure is on and I'm feeling like the kicker in a tied football game--hit it and you are the hero--miss and you are in the doghouse.

To make sure I cover everything I want to say in my short 15 minutes with the Speaker, I asked the metastatic community through the closed Facebook pages to give me advice...and the words began to flow.  Over 150 comments came in ranging from: "Tell him your story", to "Don't wear pink--wear black", to "Research must be a priority"; and most often expressed, "Make health care affordable.".  All were both heartwarming and heart wrenching ("I miss my mom every day").  I also heard from non cancer women offering support as they could some day be in this cancer hole without a cure in sight.

How could I let these voices go unheard--they were profoundly expressed and affirmed what we all want--more time.  Thanks to modern technology Rob copied and pasted the comments on twelve sheets of paper (removing all names) and sent them to the legislators and Speaker Ryan's office.  Let them read and hear our voices and our outrage at being ignored.

Stay tuned next week when I can report what happened.  I'm not expecting any miracles or huge revelations on his part but maybe, just maybe, when a bill comes up regarding more funding, he will hear my voice in his ear about our country's moral obligation to protect all citizens--especially those who are living/dying with this disease every single day.

As always, keep sending the donations to UW Carbone Cancer Center so if our government doesn't make it a priority, we can assure these dedicated scientists support towards finding a cure.

Thanks for reading #512 of 7777.