Saturday, November 17, 2018
Thursday, November 1, 2018
|A couple of metsters and our support team!|
The onslaught of pinktober is officially over and I've been following the discussions on social media. There's hate, there's love and then there is indifference. Let me address the indifference.
First of all, raise your hand if you have never met anyone with some type of cancer.
Next, raise your hand if you have a relative or friend or neighbor with this disease.
Now, raise your hand if you, indeed, have this beast living inside of you.
Maybe the small number of hands in the air of not knowing anyone lets you feel indifference to this disease because, hallelujah, it hasn't directly affected you. Unfortunately, and I don't want to scare the crap out of you, the chances are good someone you know will be hit with the cancer bomb in your lifetime. Or maybe indifference isn't the right word and it might be because you simply don't know how to help (the Pollyanna in me wants to believe you care that we are dying and truly do want to help).
Your lucky day because I will make sure you are educated on this disease and then encourage you to share your newfound knowledge with your friends.
Since cancer can affect almost any area on our bodies, I won't overwhelm you with all the known cancer facts but will narrow it down to what I know (and hate) best--metastatic breast cancer.
Here are the top ten facts according to our brochure we put together this past year (I told you I was busy!)
1. Metastatic breast cancer is breast cancer that has spread beyond the breast to other organs in the body (most often the bones, lungs, liver or brain).
2. No one dies from cancer in the breast. Deaths are due to metastasis to other parts of the body.
3. There is no cure
4. 20-30% of people initially diagnosed with early stage disease will develop metastatic breast cancer.
5. Three years is the average survival after an MBC diagnosis.
6. Metastatic breast cancer can occur 5, 10 or many years after a person's diagnosis.
7. Less than 10% of all breast cancer research dollars goes towards Stage IV
8. An estimated 150,000-250,000 Americans are living with metastatic breast cancer
9. Approximately 40,450 women and men in the US died in 2016 from MBC.
10. 100% of your donations to the The More For Stage IV fund at the UW Carbone Cancer Center (click on it) will directly benefit metastatic breast cancer research.
Now there are 10 powerful facts to share in November after the pink dust has fallen away and as the new month unfolds, we are again pushed aside, ignored or completely forgotten until next year. Guess what? My voice is louder than ever and will make sure you know we are still here and always need your support.
Last request, please go vote for the democrat running in your district! Our lives depend on making sure our preexisting conditions are covered with reasonable health care benefits and they are the ones who will protect us.
Thanks for reading #553 of 7777.
Tuesday, September 18, 2018
A guest blog from Rob (BHE-best husband ever):
People are very kind and often ask me how I’m doing. I often use the words that we walk a tightrope of hope versus reality. Or, as the canoe picture shows, some days the water is calm while others it is a category 5 storm. Let me share this article that expresses many of my sentiments and thoughts.
Thanks for reading #552 of 7777.
Thursday, August 2, 2018
|Drinking coffee on his new porch...thanks to his wife.|
Guess what? That's not me anymore. I do not intend to live with dark persisting thoughts of EVERYTHING being my last hurrah and if making home improvements is in the cards, I am on board ready to redo the entire house if needed. A few years ago we remodeled the kitchen and I questioned if it would be worth it due to my possible limited time to enjoy it. Rob was hesitant at first, not because of my health, but because he is, well, Rob. Those who know him well understand perfectly what that means. We forged ahead and of course love the finished product and kick ourselves for waiting so long. So my next project to attack with the viciousness of a wild boar, (more details to follow of the scope of my ferocity) was a screened-in porch I have been longing for since we moved into this house.
For thirteen long years I have politely mentioned (okay, downright nagged) my Best Husband Ever about adding a porch off the kitchen. We had the perfect situation with minimal effort to put this blasted addition up without causing any damage to the environment, our health, the universe...etc. etc. etc. (you get the idea and can you sense my frustration?). Rob, not quite the BHE at this point, decided thirteen years ago to dig in his heels and refused to budge about any discussion on adding this much needed attachment which, by the way, would greatly increase not only the value of our home but our quality of life since eating on the deck has proven disastrous due to the humongous influx of mosquitoes in our area. Okay, I digress, but again, can you sense my exasperation? Usually he is on board with most of my homeowner improvement ideas but this issue for some reason was nonbudgeable (not a word but it fits) in his mind.
Finally, a brilliant contractor, (can't thank Chad enough) showed him a plan that would work for our house without "putting our kitchen in complete darkness" (one of his fears of a porch) and wouldn't cost us an arm and a leg. Voila! A mere month later with minimum disturbance to our daily lives we are now proud owners of a screened-in porch and guess what? HE LOVES IT! Every single day he sits drinking his morning coffee professing his love for this space and every single day I get to say lovingly back to him, "I know, dear, I told you so." As we bask, mosquito free, on our newly built area I get to smile smugly when he tells me over and over how right I was...again.
Stay tuned for replacement of the downstairs carpet...
Thanks for reading #551 of 7777.
Friday, June 15, 2018
|Cheers to the BHE! (Best Husband Ever)|
June 19, 2014. A bone scan. On his birthday. He insisted on accompanying me when I reassured him it was probably a running injury. "Lighten up," I said. "Let's get this thing done and then go out and celebrate your big day."
As I entered the scanning arena, the young tech greeted me enthusiastically and gushed about my "adorable" shoes as I laid down on the extremely comfortable (sarcasm inserted here ) gurney. It was a jovial group preparing me for the scan which led me to feeling more at ease about the outcome. Moments later, after the procedure began, the mood in the room shifted and I craned my neck to see the pictures on the screen. Needless to say, the red dots showing up on my hip and a few other areas made me reconsider my running injury prognosis--this can't be a good sign.
When the previous bubbly tech reappeared with a sad sack look on her face, I immediately sensed a hovering doom settle into the room. She quietly escorted me to the X-ray area without a word spoken between us. At the time I clearly remember thinking, "Please, no bad news on his birthday."
Of course we didn't have any answers until the following day but the evening prior to THE phone call that would alter everything, Rob's sixty-first birthday, was a somber celebration. At the time we had no clue what a metastatic diagnosis would mean only that it was not the news we had anticipated and thought life as we knew it would now be forever changed.
And changed it has become. As of this upcoming June 19th, I will have outlived the three year median life expectancy for anyone diagnosed with metastatic breast cancer. I have gone through four radiation treatments, switched drugs twice and will be beginning my third line of treatment (on his birthday...again) which also means I have had progression twice and, a silly complaint, but have lost a good portion of my hair. The positive side to all of this is being overwhelmed again and again by the support and kindness of family, friends and strangers.
But one thing has been constant and that is this incredible loving man by my side every step of the way. He refuses to accept a grim diagnosis and has taken on this monster called cancer with a vengeance that would rattle even the most skilled opponent. If you know Rob, you know his tenacious spirit and unwillingness to take no for an answer. Our fundraising has exceeded both of our expectations (well, mine. He sees it as a challenge to find more). And he pushes on to where we are going next, how we raise more money for our researchers and educating all those who are uninformed. His networking skills are his strength and as a result have inspired others to give, donate, offer, pledge, bestow, etc. etc. etc. to our More For Stage IV fund.
A side story about his tenacity. He has become a top notch amateur researcher and well known in the medical circles, ie. my oncology department, as Dr. Google or Mr. I'll ask questions until there are no more to answer. For the past two years he has attended the world's largest breast conference in San Antonio--he schmoozes with the researchers, takes notes and then returns to relentlessly pester my oncologist about any latest treatments that might work for me. Dr. A. is always patient and understanding of his nonstop onslaught of questions and never once has he rolled his eyes. Mine, on the other hand, are often rolling around my head.
My last oncology visit was sans Rob as it was a teaching session about my new treatment so no need for him to be there. I was met with the usual hellos from everyone followed by the question, "Where's Rob?" From the nurses to the receptionists, he is adored and admired for his unbelievable gift of caring and cancer knowledge. According to them he is close to a walking metastatic encyclopedia if there ever was one and it makes me feel proud that others see him as I do--a stand-up kind of man who will do anything to keep his wife around a while longer.
Lucky me to have him by my side as we navigate through the scariest time in our lives. When we said our vows forty years ago never in a million years would I think this one would be of such importance--"In sickness and in health". Yep, he has been there for both--even on his birthday.
To wish Rob a very happy birthday, please consider a donation to UW Carbone Cancer Center. Trust me, he would honestly say it would be the best gift--ever.
Thanks for reading # 550 of 7777.
Sunday, May 13, 2018
|Alive and still kicking, thank you very much.|
Outrage, infuriate, enrage, incense, anger, scandalize, offend, affront, shock, horrify
You pick the verb that would best portray what cancer patients (and anyone with a moral compass) would feel after hearing a statement from the White House--"He's going to die anyway"--and use it to confront the ignorance, apathy, indifference, lack of concern, etc. etc. etc. surrounding a terminal disease. These words were spewed from a staff member of the President of the United States towards John McCain, a decorated war veteran, a respected member of Congress, and someone living with a terminal disease. And no apology was given, no reprimand from the higher ups. Nada. This is what it means when we marginalize terminal cancer patients--the gig is up, let's not waste another dime on you poor bastards.
Excuse me for being so blunt but where the hell is the_______(see any of the above highlighted words)? Those of us with a terminal disease must face living or dying every single day and, believe me, it does not sit well when someone so publicly dismisses us with the declaration--you are dying anyway--which has the ominous tone of: Let's stop the feeding, the care, the research because it won't make a damn bit of difference. Seriously? Is this the philosophy from Washington--where decisions are made about our health with regards to where funds go for lifesaving research?
Show me America still has a moral compass by clicking here to make a donation (100% goes to research) to the UW Carbone Cancer Center . We are worthy and NOT DEAD YET.
Thanks for reading #549 of 7777.
Friday, April 6, 2018
A tad late--February 27th was the day this was written-- but with traveling, life and etc. etc. etc.
it was never posted.
|My two sisters. Kathy is on the left.|
My first reflective thoughts were about my sister who would have celebrated her sixty-fourth birthday today. I imagined this hike was right up her alley as we fought with the wind blasts and hanging on to our hats so they weren't blown off. It was her kind of day and I felt her presence step after step on the climb.
On the downward portion of the trail my thoughts turned to a conversation I was involved in last weekend. The details are long and boring but the gist of the discussion focused on me and all I heard was how "bravely" I'm dealing with a cancer diagnosis and "My, you are such an inspiration".
A big cringe on my part as I bit my tongue, smiled and thanked them for their kind words...but then I thought about what was said. Why does this bug me so much and make me want to roll my eyes and feel like gagging when people are only being kind?
I'll dissect this layer by layer starting with the inspiration part. I certainly don't feel very inspirational--all I did was get cancer and how in the hell does that inspire anyone? But then looking at it from another angle, could I inspire people in how I am living my life? Yes, cancer is a shit storm no one wants to weather but what if my actions encourage others to successfully manage their own life's shit storm? With that said, I will work on energizing others simply by being the best that I can be. That is the lesson. All of us are a guiding light in one way or another so the next time someone tells me I am an inspiration, I will counter by telling them, "Right back at you".
Now, the brave comment is another one of those phrases that makes me squirm. I can honestly state the fact that I am not brave. Not even close to it. Some days I am scared shitless dealing with this diagnosis and on other days only half scared. But brave? I think not. Lions are brave. What gives them that bold description? We know they roar ferociously, sometimes are unbelievably savage and can attack you if you have what they want--a tasty meal already dressed (as in your whole body). At least that's what I think of a lion. Although, there is the Wizard of Oz lion...but I digress.
From this day forward I now resolve to accept the brave label because when I advocate I do roar and savagely question politicians to give more. Maybe I won't attack anyone who won't listen, but will definitely speak my mind when it comes to raising more money for Stage IV. There will be no more eye rolling on my part only a smile on my face and a very sincere but humble thank you to those acknowledging what I am doing. ROOOAAAARRRRR!
To join in the roaring go to More For Stage IV and donate today.
Thanks for reading #548 of 7777.
Sunday, February 11, 2018
Sometimes you just have to get out of bed. Last night was one of those nights when the glorious sleep fairies avoided me and as my eyes slowly opened this morning after a nanosecond of sleep I thought staying in the sack might be better for everyone instead of pretending like all was well. It would have been so much easier to hide and retreat from the world but, alas, I slowly moved from my state of inertia and joined the human race.
Actually having a cancer diagnosis often puts squandering a morning or a whole day out of the realm of possibilities for me. I feel I must drive myself to grab those awake moments and celebrate the fact that I am still moving and alive. In my mind I feel this could be my last best day and I would have frittered it away by grabbing a few lost zzzz's. Waste a perfectly good day? I think not.
Or do I? Do I have to expect every single day to be proclaimed my last BEST DAY EVER? That in itself can be overwhelming and just plain exhausting so I will allow myself to let a day slip by without fanfare or celebration. It really is okay. The word humdrum can be underrated when defining a monotonous day but if I want to nap, sit and read a book or simply put my feet up and think of nothing, it is absolutely okay.
So this day I did get out of bed, growled a bit about my sleepless night and then let the day present itself. Was it spectacular? Actually it was. On my walk to shake off the cobwebs in my head I was able to view up close and personal a beautiful hummingbird's nest made out of twigs, plant fibers and bits of leaves all woven together with spider silk. This stunning display of nature was nestled by my neighbor's front door and not only was it exquisite, but the two navy bean sized eggs put me over the top on the "wow" factor.
Yep, this was the BEST DAY EVER and thank goodness I didn't miss it. The old saying if you snooze you lose seems quite apropos for today's event and one I will remember the next time those sleep fairies disappear and leave me a groggy mess not wanting to get out of bed. Lesson learned to rise up and greet the day because one never knows what could be right around the corner.
|A close up of the eggs|
Thanks for reading #547 of 7777.
Thursday, February 1, 2018
Guess what? The numbers are in and we are proud to announce the results of our 2017 fundraising efforts. Drum roll, please... The impressive financial count for the UW Carbone Cancer Center-More For Stage IV fund is a whopping $333,339! In one year! We are still trying to wrap our heads around this as we pick up our dropped jaws. How on earth does this happen and what will transpire because of this windfall?
First, it happened due to a group of dedicated people who are committed to helping those of us living with this disease and their desire keep us around longer than the medium life expectancy of three years. Our friends offered their lovely homes and provided delicious appetizers which then gave us the opportunity to stand on our soapbox to shout out our request for more funding as well as offering an ongoing education of MBC. At each event our rockstar researchers presented an informative piece on where the research dollars would go to improve our lives. Stepping out of their labs and onto the stage showed their commitment to the cause and continues to impress us all.
And the money flowed in. It was gratifying for us to see actual faces of our donors and show our appreciation to them on the spot. Thousands of dollars were generated each night we held a function and it certainly inspired us to seek out others to join our rally cry.
Because of their generosity we were able to hand over the total sum--100% of each dollar contributed--to our researchers so they can develop new treatments or add to an existing one as it benefits the already metastasized patient. Tremendous financial help is on the way as they now share their ideas on what to do with the funds. I am in awe of their skills they will use so my beautiful granddaughter will have her Grandma G around to watch her grow up.
But we are not done. There still is no cure so we can not sit back and pat ourselves on the back for our one year of phenomenal success. A plan needs to be created on how we can top that ginormous number. We certainly could use additional ideas and your creativity as we spend the winter brainstorming other ways to raise the bar. How would you suggest we tackle our next project? Please, help be part of the solution as we navigate through the complex labyrinth of the fundraising world. I will keep swimming but we need other angles to bring in the dough. Don't hesitate to suggest something outrageous--all feedback will help us move on to that next level-- unless it is something along the lines of me swimming sans bathing suit. Not going to happen.
Again, thank all of you for your tremendous ongoing support. If you haven't donated or would like to be one of the first donators of the year, please send it to More for Stage IV--UW Carbone Cancer Center. Remember this quote from Anne Frank, "No one has ever become poor by giving".
Thanks for reading #546 of 7777.
Tuesday, January 16, 2018
|Yep, this looks like me.|
Some days when I feel like a million bucks it is as if I am back to my old self again. I crack jokes, smile at the world and jump up and down screaming, "I'm alive, you *&^% cancer cells so back off." Those are the good days that I embrace and cherish
When the bad days pop up I feel my eyes crossing and my ornery cantankerous personality surface with a vengeance and watch out to anyone in my path. I snap at poor Rob (he's learned to stay clear) or criticize my dear friends when all they want to do is help. It's as if I can't help myself. I am one gigantic bitch and I want everyone else to feel as miserable as I do.
And I hate it when I'm like that. That is not me--not the me I remember before cancer. Yes, I might have had my moments (don't we all?) but nothing, absolutely nothing like what I do now on a bad day.
Anything can trigger those mean son of bitches days--lack of sleep, sore bones, another mets sister dying--you name it the fury will rise out of nowhere and I am ready to knock anyone or anything to the moon and back.
How do I combat this need to slice and dice my good friends or my beloved husband? Meditation in the morning seems to improve my sour mood for a short time. Catching myself before I say something hurtful has proven to rid those ugly words on the tip of my tongue when I feel need to spew venom at anyone near me. Exercise can be two fold--either it's that winning sense --I'm on top of my game-- or a depressed --can't do what I used to do and I'm going to hurt someone today--feeling. My goal is to have at least a few good friends left and my loving husband by my side before I kick the bucket, but at times it feels like it might be a wash as everyone will begin to desert this foul mouthed cancer riddled woman before she can make amends. Let's hope this won't be the case.
Enough! Tomorrow will be what it will be and if I can stay on top of the pain and the mood swings I might be pleasant enough to either make peace with those loyal friends or at least apologize
in advance for this cranky old hibernating bear.
Love to all (must be a good day for me).
Thanks for reading #545 of 7777.
Thursday, January 4, 2018
|Daily Mail--Wish this was me kicking the keister!|
On a cold January day six years ago I heard those fateful words, "You have cancer". It's mystifying how our minds work because I vividly remember exactly where I was and who was with me but have little recollection of what was said after hearing the confirmation I was dreading. Those three little words profoundly changed my life and the lives of my beloved family from that day onward.
Little did I realize it was only the very beginning of a life long relationship with this disease but at the time I was devastated, angry and felt completely out of control. How could this happen? Wasn't I a model of good health being physically active and eating right as I prepared for the next phase of life attempting to be on the top of my game? Cancer, I later found out, does not care what shape or size you are in or if you have eaten kale every day of your adult life. It is often a random occurrence that stuns its recipients and attempts to knock them off their keister. And knock me it did.
I eventually learned the nitty gritty details about the diagnosis and discovered that it was a small (the medical team's words) 3 cm tumor which was surgically removed, afterwards the breast was zapped with chemo for six months followed by six weeks of radiation. It ended up to be an exhausting nine months of terror but when the final rays blasted through my body I was done--a survivor of this ungodly year from hell.
Recovery from the onslaught took more time than I had anticipated but I was thrilled to be able to run a race shortly after the last radiation treatment and began preparing for a triathlon the following June. I was on a roll and felt cancer was just a blip in the radar of life that was finally over. Unfortunately my celebration was a short lived "cancer free" existence as twenty months later my oncologist carefully explained what happens next because those nasty cancer cells had metastasized. Another kick in the old keister but this time it felt like more of a stomp.
Back to this "anniversary" of sorts. On January 6th I will not celebrate my six year cancer diagnosis. It is the antithesis of a beautiful memory so will simply nod as the day flows by and remember how this gut wrenching disease has not gotten the best of me yet. I will never be a survivor but I am a thriver and every day I get up, see the sunshine, the clouds or whatever is outside my window and think, "I am not dead yet so turn around you #*$#* cancer because I am kicking your keister as hard as I can...of course with a little help from my friends. "
To be a keister kicking helper, please donate to UW Carbone Cancer Center.
Thanks for reading # 544 of 7777.