Crazy like a loon

'But about the loon-- you know, but he's a funny bird. He's a lonesome, a melancholy bird, but he's got a lot of sense. We can learn something from him. The way he's made, he can't walk much, so he don't get out on land-- you never seen one on land, did you?-- He don't get out of the water unless he has to. A lesson to some of us to stay where we're meant to be.'  The Loon Feather by Iola Fuller

Rick took these photos last weekend at the lake and I am just sitting down to post them.  We sat mesmerized in the boat for hours while nature performed for us.  If you've never heard the call of the loon, listen for a minute to the video...  melancholy and haunting sums it up nicely. 

Loon lookout...

Thank you all for your uplifting and encouraging messages on Tuesday! Chemo knocked me down a bit this round and I not only slept Tuesday evening but much of Wednesday and Wednesday night. I am playing catch up on just about everything.

We had a truly fabulous 4th of July weekend! We spent Saturday in Park Rapids at the lake with Rick's family and then Sunday we were invited down to Loon Lake and hung out for the afternoon with our "hockey" family. Thank you Connelly's for the great time!  Have I mentioned how much I love being at the lake?

I "edited" most of these photos just for fun, but they didn't really require any tweaking.  We've been on a  run of amazingly perfect summer weather and I'm soaking it all in.

I had a "good" visit with Dr. Panalkar on Tuesday.  He definitely seemed pleased with my response so far to the TDM1.  After examining the tumor site, he mentioned again he is ready to move forward with the masectomy.  He even mentioned "this week?"  But I need to explore reconstruction possibilities and plastic surgeons, so he said he will consult with Dr. Boutin, the breast surgeon and then we will proceed from there... we also don't want to interrupt my chemo schedule, so a lot is under consideration right now. I will share details when everything gets sorted out!

A year ago today...

Dear Dad,

It feels both like yesterday and yet forever ago at the same time.  Its barely one year ago today, as Lee, Mom, and I sat making plans with the hospice nurse for your care.  You were already slipping so quickly from life, but as long as you fought and as strong as your spirit was, we couldn't have known how quickly you'd leave us.

I go over and over the events of that day looking for the clues or signs we missed that July 5th was your last day on this earth. My mind fills with the sight of the big white and blue striped coffee mug meticulously filled with syringes of morphine by the nurse.  You searched my face when she asked that we get you in bed.  "Why," you said, "am I sick?"  I faltered a minute before I said, "Well, we just think you ought to rest a bit."  Who was I to crash reality down on you, when you had so bravely held it at bay?

After all, she told us. In a soft spoken, easy manner, she told us. You were in your final stages. Maybe days, maybe just a day or two. She had a comforting way about her and she put our minds at ease, even as you wrestled that day. You didn't want to lie in bed, you never lied down in your bed.  You fought off the covers, kicking your legs out of the bed. You muttered and spoke things we couldn't quite make out. You brushed my hand away as I tried to lay my hand on your arm. But that mug filled with syringes- enough for a week- was where we set our eyes.  We left you to rest.

My head was filled with what I would say, how I would provide comfort, the way in which you'd leave your place amongst us. We'd gather, we'd say our words. We planned- always a plan. But then I forgot the essence of who you were- and it always involved plans gone awry. Besides, clearly Dad, neither you, nor I, were ever really in charge of the plan. It frightened me, yet it comforted me. If not my hands, HIS hands, as I would come to see.

At sunset we stepped outside of the apartment for a quick breather. We stood in the driveway with our mouths agape, straining to see the glory painting the sky- blazing a trail straight up to heaven. Just hours later, as we gathered, not in your room, but just outside of it, you quietly slipped away from us. It was your way Dad. There was no bedside handholding, no words uttered, no tears shed-until we realized you had gone on ahead of us, without us.

I smile through the salt of my tears when I think about the way the sky lit up fire engine red and blaze orange, the night your soul went to heaven.  You saved the best for last.  It was a far better exit than I could have imagined or planned, and even in death you taught me.

Sometimes the purpose of a day is to merely feel our sadness, knowing that as we do, we allow whole layers of grief, like old skin cells to drop off us  ~ Marianne Williamson

I sit here today with the lifesaving chemo drugs flowing through the needle sticking out of the port in my chest.  I'm sitting with the sadness of missing you.

But, I've remembered to kick the covers off Dad.

To not spend too many days in bed.

To fight Dad, just as you fought.

With our heads up.

With grace.

And to always look for the glory in the sunset.

I love you and miss you Dad,

Snickelfritz

Tee'd off @ Cancer for a cause!

Here is some of my exciting news! Because of the stellar work of my benefit committee, Dakota Medical Foundation has chosen me to be part of their Lend A Hand Initiative.  Dakota Medical Foundation, otherwise known as DMF, will match funds raised by our benefit up to 5,000 dollars!  


Even though many people attended and gave generously at the first benefit we did, many other people did not have a chance to attend and we hadn't been approved yet by DMF. So the committee came up with this fun idea to host a golf tournament and try to raise funds and receive the matching $5,000.  All of the details are posted in my sidebar if you follow the link!  Stay tuned for more fun details of the big day!  

Even if you are not a golfer, you can donate to the fund by following the link to DMF, scrolling down and finding my flyer (my flyer is the first one listed.)  Of course, if you've already contributed and attended the first benefit, please know we don't expect you to do more!  

But in case you've been wondering, let me give you some context of what the reality is financially for cancer patients- regardless of their insurance.  One of the drugs I am receiving through the study is Trastuzumab, or Herceptin (along with a chemo agent, known together as TDM1.)  As long as I am both tolerating the treatment and having no "progression" of my tumors, I will be allowed to receive my chemo drugs, scans, tests, etc, at no cost to me or my insurance.  However, if I were to show progression, or no longer tolerate the drug, I would be taken off TDM1.  At some point, most people on TDM1 will show resistance to it.

At that point, I could continue with standard Herceptin and other standard chemo agents, with a catch. 

Wiki provided this helpful info...

Trastuzumab is also controversial because of its cost, as much as $100,000 per year, and while certain private insurance companies in the U.S. and government health care systems in Canada, the U.K. and elsewhere have refused to pay for trastuzumab for certain patients, some companies have since accepted trastuzumab treatment as a covered preventative treatment.

Just how much will my insurance cover, if it does at all?  Its one of the many unknowns i face, and will eventually have to find the answer to.  Many insurances also limit the number of scans you are allowed in a year.  With the average PET scan costing well over 5,000 dollars this makes sense.  But to a cancer patient who can only know what their cancer is doing based on what is seen on this scan, once a year isn't nearly often enough.  

Hence the burden faced my most cancer patients.  Add in the fact that I have been told to expect I will never be without treatment of some sort.  Because the cancer has metastasized, the cells are everywhere within me and we will never know where they may show up next. I try not to think about that.  And you all enable me to do that more than you know.

My family and I continue to be overwhelmed with all that is being done to ease our burden.  I don't sit with the financial or physical weight of fighting this disease on my shoulders  because so many of you continue to step up and give so generously.  It all matters to us.  Whether its a meal, or card, or your favorite cd, or an email of encouragement, or a golf benefit, it all counts equally to us.  

I keep telling Dr. Panwalkar, I feel lucky... I think he may just be starting to believe me.

In other news...

Blueline hockey camp is officially over for the year!  The boys loved their camp experience and the highlight is when Matt Cullen, from the Minnesota Wild and Mark Cullen, of the Florida Panthers- AHL Rochester Americans, come home for the summer and show up for a day to sign autographs.  Colton rallied from a doubled=over stomach ache to dress in his goalie gear for his last session, since Matt was coming on the ice with them.  Colton only asked one thing of Matt "no slapshots on me, please."  Matt laughed and said he had a deal... but I happen to know his wrist shot is no joke either! 

Matt's wife Bridget asked me if I was "sick" of being at the rink... I said absolutely... NOT.  All day I watched as young player after player lit up when Matt and Mark would talk to them and encourage them.  There were beaming faces everywhere and the joy was palpable.  

 


Left to Right: Matt Cullen, Colton, Mark Cullen

Its not about the book...

Would you believe me if I said these photos are from book club? Yep, for real. Coolest, book club, ever. What I've come to know about our group is that we are never at a loss for something to talk about, and yes, we even talk about books sometimes, or not.  So when the suggestion was made for a Friday afternoon book club meeting by the pool, it should be no surprise that we all jumped at the offer.  Even more surprising, I was able to attend as I've missed the last two meetings,  and all but 1 friend *cough* Amy, made it for the afternoon.

It was a mildly overcast day, just bright enough to make you squint, but not so hot you needed to cool off in the water.  The rain threatened off in the distance, but nothing dampened our spirits. We laughed, we ate tasty foods, laughed some more, and completely relaxed around the pool.

While the rest stayed through the night, I had to leave early to get Colton to baseball.  I so didn't want to leave.  Its one thing to have a group of women make you feel like a part of their group.  Its another thing to feel more than just accepted, and truly embraced and valued.




Back row, L to R: Shauna, our host, Heidi, Jill, Heidi, Jen.  Front row L to R: Suzanne, Nikki (who is definitely wearing clothes and allowing me the use of her knee to sit on) myself and Pam.

 

I have some exciting news to share in the next few days or so... stay tuned!  

on boughs too slight

“Be like the bird that, 
pausing in her flight awhile on boughs too slight, 
feels them give way beneath her, 
and yet sings, 
knowing that she hath wings.”


Victor Hugo




The other day, I could hear the faintest "brushing" sound, a fluttering of sorts and looked over my shoulder to discover a flash of yellow.  In the gloomy grey, pouring down rain, a baby finch appeared in my window. But he hovered, hence the noise I heard.  And upon a closer look I saw that he had somehow managed to plop his little claw just over the metal rim on my window. 


He precariously perched for the longest time while I carefully retrieved my camera.  He seemed both barely hanging on, and yet not afraid of his tenuous position. 3 quick pics were all I managed to get off before he took flight again.  


This much I know is true, God always seems to bring me something that helps me articulate how I feel.  I've been trying to put into words what "cancer" has meant to my life.  Oh sure, the obvious things, the chemo, the diet, the tumor protruding from my right breast that is still both crusty and grotesque, but a part of me nonetheless.  All of these I've grown somewhat accustomed to and can speak about at will.  In fact, saying I am making a trip to Roger Maris has come to sound like I am going to visit a favorite Uncle, instead of the name of the cancer treatment center I attend frequently.  But those are the obvious ways cancer affects your life.  


On a deeper level?  I'm not truly sure if I know yet the how and why of cancer and what it means for my life. Three months past diagnosis and in many ways I am still just a "newbie."  I've begun to spend some time on the cancer "boards."  Last week I finally made a profile for myself and spoke up for the first time.  The "veterans" on the board have lived years with varying diagnoses of breast cancer.  They're on their 9th or 10th new drug now, they've had hair and lost it, gained weight with steroids and lost both breasts, or surrendered an arm to lymphedema. They've been cancer free for months or years, only to have it come tearing back into their lives sending them to the ends of the world in search of the next cutting edge treatment.  Their insight and experience is both mesmerizing, encouraging and gut wrenching all at once.


Through all of my reading, all of my conversations, what I've come to see is how very close to that fledgling bird I really am. I think when I didn't first see that bird perched on my window, God helped me hear the fluttering and notice the bird, for a reason.  No different than me getting cancer, for a reason.  Most of the reasons I can come to know, but some of those reasons will take a bit of work to discover. 


I've gotten a tiny finger hold or "claw" on the ledge of the window looking into cancer.  And now, I am beginning to understand the key is to learn how to sing, and find my wings, no matter how slight the bough on which I perch.  

Hope sits...

In a basket on my kitchen table, is my box of hope. Or my "encouragement stash" as "The Nester," put it in her piece, "Everyday Encouragement," over at (in)courage.  But unlike some stashes, mine has accumulated in a mere 3 months, since the time I was first diagnosed with breast cancer.  And the basket is filled to overflowing thanks to the outpouring of love I continue to receive.   I lay eyes on it every day.  In fact I am constantly rummaging through it and re-reading.  Love-filled, hope- inducing, comfort giving words, that are balm for my soul fill me back up when the burden is starting to weigh in on me.

Running out to the mailbox has become a cherished time of day, and I am rarely disappointed.  The cards of encouragement come from all over and each day I relish and savor ripping into a new envelope, a new message, a new hope-filled moment.  My cup, um, "basket" continues to overflow and I couldn't be more blessed by it.