yucky with a side of ugh...

I don't feel well, at all.  I expected some nausea and fatigue after infusion last week.  I kept a low profile Wednesday and Thursday.  But the gnawing in my stomach continued Friday.  

I made it out the door for a haircut and was overwhelmed by the generosity of my stylist, Amanda.  Having heard about the cost of my medicine, she refused to let me pay.  I was instantly in tears.  When I don't feel well and am so vulnerable, I seem to wear my emotions on my sleeve and let my teary eyes tell my story.  

By Saturday mid-afternoon, I was flat out in bed.  Cramping began in my stomach and running to the bathroom became a pastime.  

I did go along with the boys for haircuts.  Nolan had asked, yes, his idea, to have his hair cut shorter.  I was thrilled to see all that hockey hair go.  He easily lost 5 or 6 inches of hair.  

I don't really have a before picture... but I can tell you he sat down a 12-year -old, and stood up looking like a 16-year -old.  

Crosby has been my man.  Not only has he not left my side, he has almost entirely stopped eating and drinking.  He acts completely normal but turns his nose up at his food and water.  

So we have two calls in this morning.  One for my poor pup, who is taking "sympathy" to a whole new level, and one for me.  

I am determined to come up with a plan so I can take my drugs, feel well, and take my excited boys on their trip later this week.  That's not asking too much, is it?  *wink* 

Make my life...

My week so far...  

It started with this pretty envelope showing up in the mail...

"Make my life a prayer... "

My sweetest friend Robin@All Things Heart and Home, sent this bracelet to me in the mail. She shared on her blog:

"My prayer for these humble little bracelets is that every time we see them on our wrists we remember to whisper a prayer…over and over throughout the day, our focus gently turned towards the One who made us…over and over whispered prayers of thanks, healing prayers for a friend, prayers of provision for another, prayers of deliverance for someone else, prayers for a stranger …"

You can read more about the story behind the bracelets and how she uses hers by reading her post here.  

I am left thinking, how will I use this to do the same?  "Make my life a prayer?"  My head is swimming with the newness of the week and all of the possibilities. 

As I prepared to receive my "Vitamin H," on Tuesday, Dr. Panwalkar's nurse, Andrea popped into my room.  I haven't seen her since my diagnosis, two years ago, so it was a pleasant surprise to see her again.

She brought with her the list of side effects I may encounter from taking the oral pill, Xeloda.  She also highlighted the most concerning ones, and told me to call her instantly if any of those occur.  They will more than likely have me stop taking the drug, wait a bit, and then try a lower dose.  I was so relieved.  If I am on my trip and have some of those side effects, I will know exactly what to do!  

A few minutes later, one of the Social Workers, Cheryl came into visit.  She essentially pre-qualified us to receive some funds from the drug company to reimburse part of the 859 dollars every 3 weeks that the Xeloda will cost.  

She is apologetic... "its not much."  But its more than I had before her visit.  And not much?  Truly adds up to a lot when its answered prayer.  

"Make my life a prayer..."   Thank you, Father.  Thank you." 

Yesterday I had an eye exam complete with dilation.  I ended up spending the early evening hours in bed with a blurry focus and queasy stomach- but with the good news that despite a little correction needed, the health of my eyes is very good.  

 But Nolan was insistent I get up to eat dinner with them.  I mustered a few bites of food, and then saw a glimmer coming from the counter.  I was so surprised to open a bag and find...

Sparkly mittens!  Beyond adorable!  Thank you Sue for brightening my day!  

Normally, one may not be thrilled with new mittens on the first day of spring... however...

when we awoke yesterday, the sun was shining- but we quickly discovered...

It was a balmy -4 outside!!  

Yes- below zero with a wind that cut right through.  With snow, piled up everywhere, and no warm-up in sight for another week at least.  

Mittens, that sparkle, could not be any more perfect.

But the gifts of the day had not all been revealed yet.  As I sat down to dinner,  I saw Nolan had placed a sheet of paper by my plate,  I turned it over to discover this certificate for Student of the Month.  Wow- I love how Horizon Middle School makes it a priority to recognize the achievements of our kids.  So proud of you Nolan! 

I've been wondering how missing a week of school will affect Nolan and his grades.  I feel the gentle nudge from Him, "he'll be okay."  

I go back to bed, with dinner not really sitting too well with me.

I had such a gnawing in my stomach, and I kept thinking what can I find to eat?  A couple of hours later, another knock at the door and my sweet friend Heidi has brought warm, homemade, bread!  

Its warmth makes it moist and easy on my mouth.  It feels perfect going down, and a short time later, my stomach settles.  I think its the extra dose of love that Heidi bakes with, that truly sits so well.

Time and again, with barely an utterance from my soul, my needs are met in a way that is bigger than I can fully put into words.  

I sat there thinking- wow- this is how prayer shows up in your life.  The right people, with exactly the right things, showing you how to keep on going.  "Wow, Father, wow, the simple abundance continues to nourish me, even when I struggle with the ability to eat." 

Its late now and I finally sit down to go through my email.

The last surprise I receive is a link to the television ad I wrote about previously.  Its hosted on vimeo and I have a short little clip towards the end of the ad.  I would love for you to view it here.  Maybe you'll even click the like button and like it?  The more attention it gets, the longer it will play on cable- and the more audience we can reach.  

Edith Sanford  Breast Cancer Foundation

"Help Father, help.  There are so many others, with heavy burdens, needing to feel Your ever faithful and loving presence."  Please help.  

"Make my life a prayer..."  

How may I pray for you today?  Email or leave requests in the comments.  

2 years ago...

It is a good thing to be without a trouble; but it is a better thing to have a trouble, and know how to get grace enough to bear it.” ~Spurgeon 

Two years ago, March 16th, 2011, forever changed me.  Its often referred to as our "cancerversary."  But that implies a completion of treatment, a moving on with life in a cancer free state.  And that simply isn't me and may never be.

But there IS a word buried in there that does give me pause.  That does hold meaning.  That truly is the part that humbles me and fills me instantly with a gratitude that is all- encompassing.

The 2.  As in 2 years... and I'm still here.  Still breathing.  Still fighting. Living. Still... here.

If you were to go back and look at a snippet, or two, or twelve, blog posts during those 2 years, you'd see how much I've lived.  How well I've lived.  And I wouldn't change any of it.  None of the big, messy, hard, beautiful, blessed, difficult, parts of it.

2.  It's what has me staring at the next most significant part of my life to come... 3.  Here's to hoping that 2 leads to 3, and so on and so forth...

"Prove me wrong,"  Dr. Panwalkar says, "prove me wrong."  His numbers tell him 3 is as far as I can go... but I tell him I'm not really listening to those numbers, and he smiles.

So today I am humbled.  Remembering the ones who didn't even make it to 2.  Celebrating the ones who passed it.  And hoping that somehow, some way, my 2 turns into 3 and that I will have "grace enough to bear it."



Rick went to the pharmacy to pick up my new chemo prescription.  We were warned of the cost and that we can apply for some financial assistance.  859 dollars later, (every 3 weeks) I say bring on the avalanche of paper work!  Holy canoli- thank goodness we have clung to our benefit funds and have some in reserve for just this purpose.  For all of you who have given so generously to us over the past 2 years- it has been LIFE SAVING.  I can't begin to tell you the relief we feel in knowing we will still be okay these next few months.

Tomorrow I will have infusion and start taking my Xeloda- 6 pills a day.  (Anyone with advice on how to best take it- I am all ears!)


We are scheduled to leave on our trip, the Thursday before Easter weekend.  A few things still have to fall into place.  I will have to not be having too many side effects from the Xeloda in order to endure three long days in the car.  The family who asked us to go with them, has had a set back, and we are just waiting for some clarity about if and/or when they may still be able to join us.

We've figured out, that when we are in a free-fall- you may as well just fall.  Everything will sort itself out eventually, and grace will be your companion if you seek it.

Another blizzard is bearing down on us today and its both brutally windy, and cold.  It was nearly 80 degrees last year at this time and we've been tortured this weekend with scenes from last year.


My phone rang on Friday and I literally had no voice to answer it.  The subsequent voice mail left me grinning.

Last summer I was asked by the Edith Sanford Breast Cancer Foundation to share my story on camera with them.  While I've shared the video and so many of you have seen my story, the tv commercials never came to fruition- until now.

Chris Orzechowski, Vice President, Branding and Coummunications, at Edith Sanford, relayed on voice mail to me that the new commercial would start airing on Sunday.  They are testing it in several mid-level cable television channels.  Channels such as Biography, History, Inspiration, BBC- America, Angel, etc.

I watched off and on all day, but alas.  Did not see anything yet.

If you happen to watch and see something- I'd love for you to let me know!

The lost week

Apparently my Lysol spraying, hand-santizing, hand-washing routines couldn't keep me protected from picking up a cold this past weekend.  Of course, surrounding myself with crowds of 20,000 plus people  for 4 days in a row, probably didn't help my cause.  But you know I'll take that risk sometimes.  I lived so many full moments those days, I wouldn't trade that for anything.

So I am sniffling and sneezing, hacking and coughing- trying to shake this bug.  I've had worse, and felt worse, so there's that.  I just need to be well enough to have infusion on Tuesday and start taking Xeloda.  

In the meantime,  look at all the day brightening goodies that have come my way.  Tea and gift cards and a mirror and heartfelt letters and cards with inspiring verses, etc.  Thank you all!  

The time spent resting has afforded me the opportunity to finally finish all 600+ pages of this amazing book.  If you like richly layered stories with compelling characters this might be the saga for you.  Its was both enlightening, sophisticated, yet accessible and highly readable.  

I'm about the begin this book:

Are you reading anything these days that you love?  Please share!  

Change = hope (and an update)

Incredible change happens in your life when you decide to take control of what you do have power over instead of craving control over what you don't. - Steve Maraboli, Life, the Truth, and Being Free

We left last Thursday for St. Paul, MN and the opening round of the 2013 MN State Hockey Tournament.  Our high school team, the Moorhead Spuds were scheduled to take on another northern team, the Duluth East Hounds.  

We left at 6 am and were treated to temps warming as we drove and a beautiful sun lighting up the sky.  It set the tone for a magical, fun, exciting, live-your-moments full- 4 days of hockey madness.  

We ate too much, slept too little, laughed way hard, and celebrated all the moments in between.  

I wanted to capture it all- each person- each moment- each memory.

But, here's a small sampling of the friends, the places, the fun, the memories- the people I love and treasure who always, above everything else, make me feel like I matter, with tons of loving gestures.

Most of the pics are from my phone - some are grainy and blurry, out of focus, lacking light, etc.  I don't care.  They froze the moments I want to cherish and remember and that is all that really counts in the end.

Congrats Spuds- Consolation Champs!

I was expecting the call from Dr. P.  I was not expecting the news he had to share with me.  The study will not "unblind" their results for me so that I can find out if I had Pertuzumab or not.  He called it "borderline unethical" that they won't tell me.

Bottom line, it means we can't risk right now, taking a drug that I may have already had that eventually failed.  

So I will have to go with his plan B drug of choice- Xeloda.  Its a good drug.  Its an oral pill I take several times a day.  I will start next week. 

But this drug carries more side effects: nausea, diarrhea, hand and foot syndrome (crack, peel, bleed), mouth sores, metalic taste in mouth, lowered blood counts and the possibility of thinning hair or hair loss (smaller chance for total hair loss.) 

I was subdued after the call for a bit, not quite ready to face the possibility of not feeling well again.  But then I leaned into my own words- and just decided to live my moments full, despite what may or may not happen.  

What I like most about change is that it’s a synonym for “hope”. If you are taking a risk, what you are really saying is, “I believe in tomorrow and I will be part of it.” – Linda Ellerbee

Embracing...

Dr. Panwalkar walked in a few minutes later than usual and sat down right away to begin downloading images.  The computer takes awhile to load and I fight off the urge to being barraging him with questions.  

On the right side was my PET scan from 2 years ago.  On the left was my scan from 2 weeks ago.  The initial images were white, black and grey and were of my brain.  I panicked for a moment and said, "Its not in my brain is it?"  

No, he replied, I hope you didn't assume the worst? It is worse, but not terrible.  I repeated the "not terrible," part, laughing at his description, and he laughed back saying "Sorry, not a great use of words on my part."  

But I am reading him well and garner strength from his calm demeanor.

He is still shuffling through the layers of scans and and when he gets to my chest we begin to see the color yellow.  Yellow he tells me is cancer activity. He points out anatomical structures so I am oriented and then shows me the lymph node that has grown and is glowing yellow. ( Not a surprise, I've felt this one grow and he acknowledges this.)

Another small yellow dot appears, its the "lump" I felt that brought me in several weeks ago to be examined.  It doesn't appear to be a lymph node, but it doesn't matter, it glows yellow- it shows cancer activity.

He then continues down the scan and several more yellow spots appear and I see now, its back in my left lung.  The three spots I had before (last February) are growing and so is a new lymph node located next to my lungs.  

We now compare CT scans from last year to the one taken a few weeks ago.  The lung tumors were shrinking last spring and that is what enabled me to come off chemo for awhile.  

But it could be they never went away completely, and have just been remaining stable for awhile.  

The lung tumors are now back to about their beginning size, which if I recall, were still considered small.  

But I scan his face and he is calm.  So I quickly say- so no cancer in the brain, no liver, no breast, no spine, or any of the other places from before?  

No.  Nothing else.

It feels so odd, to feel relief while still facing and hearing "you have cancer in your lungs."  

So...

He wants me to go back to chemo.  Its the drug that was a part of my original study- called Perjeta, or Pertuzumab.  He thinks they did actually hear from the study proctors, that I did NOT get Perjeta in the study and I therefore would be able to get it now, since it is FDA approved.  

I would have it infused once every 3 weeks, along with my Herceptin.

Milder side effects- no hair loss.  

So that is plan A.  Perjeta plus Herceptin 1x every 3 weeks.

Plan B would be an oral drug called Xeloda- much more harsh side effects, but we will cross that bridge later.  

Also discussed:

Having my ovaries out- not until after my trip.

Having radiation for the lymph node if it starts to become a daily nuisance.

And the possibility of radio frequency ablation to the lungs if say two tumors respond, and one doesn't respond to Perjeta.  

Lots of variables, but lots of options.

He then asked if I had any more questions and I said just one, 

Will you take a picture with me?

And then his face broke open into a wide smile and he laughed his hearty laugh.  Thats it?  That is your question?

Yep.

Of course, he replies.

So he embraces me tight, and Rick grabs the phone and fires off a quick couple of shots.

Then we chat casually and he tells me about his ski vacation and how he learned how to ski for the first time- along with his daughter.  

See you in 5 weeks, he says.

Lets just try to knock it back and keep you going for a long time.

The sun is shining and I feel bathed in light and warmth the whole way home.  

 “My grace is sufficient for you, for my power is made perfect in weakness..."

2 Corinthians 12:9

The epic tale...

I can't actually hardly begin to tell the epic tale of Nolan's Peewee AA hockey team and their performance this weekend.  After a late night at the Minnesota Wild game last night, we got up and left the Cities at 530 this morning to try and beat out all of the snow headed our way.

My voice is raspy and hoarse from lack of sleep and tons of gut- wrenching hockey watching and cheering.

Let me simply say- these boys were amazing!  I absolutely plan to come back and post more pics and share all of their accomplishments- because they deserve it.

But first,  tomorrow?  Its finally here.  My appointment with Dr. Panwalkar that will reveal the results of my test and allow me to fully know the plans for new treatment.

My phone has once again buzzed steadily all day with reminders that I am covered in prayer- and how lucky I am to have so many faithfully supporting and praying.

I'll be back with an update... soon...

Love to you all~