Wednesday, February 29, 2012

beam me up...

I started my week off bathing in light in the waiting room at Roger Maris.  My camera is sitting on my lap and I am shooting straight up.  

I met with my radiation doctor on Monday, Dr. Ethan Foster.  He had read my file and was familiar with my history.  Then he asked to examine me.  Before I could warn him about my lymph node under my arm he pushed just a little too hard and I flinched.  He jumped back and I felt so bad.  But the reason he had to push around to find it?  Is because its already shrunk.  It may be that the swelling has just gone down, but it could be that the node itself is shrinking.  Either way, we decided to hold off on radiating the nodes under my arm for now.  Love finding the silver lining so quickly!  Halaven seems to be having an effect on my nodes!  

Next we moved onto the issue of the spot in my back.  At times its fine.  Other times it flares and gives me fits.  Since there is a lengthy history with it,  and its precariously close to my spinal cord, we decided now is the perfect time to zap it.  The biggest side effect I may have is difficulty in swallowing for a few weeks, due to the esophagus being so close to the spine.  He felt a two week course of treatment should be enough, but he'd adjust accordingly if needed.

Then we got down to the biggest concern.  I have to admit, I've been pretty blasé about the whole brain blob thing.  When I don't have any symptoms, I simply don't focus on it very much.  But the reality of it set in as we started talking side effects of treatment.

I have two choices.  A one time targeted dose to the spot in my brain.  Or whole brain radiation.  With a targeted dose, the hope is to direct the radiation only to the tumor, and preserve the healthy tissue surrounding it.  Fatigue would most likely be the biggest side effect.  

Whole brain radiation on the other hand, targets the entire brain.  But the well known possible side effect is a decrease in overall mental functioning.  As Dr. Foster said "you could lose a few IQ points."  With my School Psychologist background and my intimate knowledge of IQ, well, "losing" and "IQ" are two words you never want to see sitting side by side in a sentence about yourself.

But....  the more nebulous/ominous question remains... are there more cancerous cells in my brain waiting to make their appearance?  Whole brain radiation would certainly zap those as well...  

Such big decisions, and yet for some reason, I didn't wrestle with this as much as I thought I would.  In fact, he had me choose first and then told me his thoughts.  

I chose a one time targeted dose.

He concurred.

Then he shared with me, for most people he recommends WBR.  But, if he were in my shoes, at my age?  He could see why I'd want to try the least invasive first,  he would too.  


Of course, I have to have another brain MRI first.  One that will take even more thinly sliced views of the brain.  If more spots appear, I will have no choice but to go for WBR.  

I topped off my big day with wig shopping.  I still have my hair, but my wig comes in this week!  I am ready.  

And this was just my Monday... sigh... I feel like I am passing through time in light years... 

Our big snowstorm?  Is kind of a bust.  We did get a few inches of snow and its blowing around out there, but  oh well, we'll take the snow day and snuggle in.  

One tiny prayer request?  I referred myself back to wound care.  I have a small "crater" that opened up along my incision. Sigh.  You prayed me through the last time and it totally worked.  But even this has a silver lining- I get to see Dr. Bouton again next week.  

An abundance of light has shown up in my mail box and front step!  Thank you for continuing to beam light at me from all angles! 

Monday, February 27, 2012

The power of love...

The power of love to change bodies is legendary, built into folklore, common sense, and everyday experience.  Love moves the flesh, it pushes matter around.... Throughout history, "tender loving care" has uniformly been recognized as a valuable element in healing.  ~Larry Dossey

Last week I began to feel like maybe I wouldn't feel well again.  Thursday found me still relishing my bed. Friday I decided I didn't care if I felt well or not.  I was getting out of bed, out of the house, and back out into life, sick or not.

And a surprising thing happened.  I actually started to feel better.  Friday night we decided to go watch The Squirt A's play in their hockey game in the big Squirt International tournament here in town for the weekend.  I was delighted to have the opportunity to see so many people we don't see on a regular basis right now.

And I have something I want to say.

I want to tell you its okay.

Its okay if you come to me with tears in your eyes.  Yep, tears, okay.

Its okay if you want to ask me how I am.  I'm fine talking about it.

Its also okay if you DON'T want to talk about it.  We can talk weather, kids, hockey, whatever.  Its all okay.

Its also okay to talk about, your cold, your headache, your job frustration, your sadness over something,  etc.  I hear this a lot, "oh but its nothing compared to what you are going through, I shouldn't be telling you."  Yes, you should.  Want to know why?  It makes me feel normal!  You're treating me like you would any other person, and it makes me feel human and normal.  Me having cancer doesn't diminish your concerns, and worries and struggles, and shouldn't dampen your joy.

Saturday, was even better for me.  I made it through 2 really good hockey games, and an afternoon at the Home Show.  I had hit a wall by the time we left the Fargo Dome.

I came home to a mailbox stuffed with cards.  One of them was anonymous.  And it humbled me very deeply.  It had lovely, gracious words in it.  And offered an apology of sorts for not knowing what to say when that person sees me.

Please, please know. Its okay.  I don't expect anyone to really know what to say- shoot I don't know what to say half the time myself.  But I have never, and I do mean never, walked away from a  conversation feeling like someone said the wrong thing, or not enough of something, or what have you.  It takes a great deal to approach someone going through something difficult.  Thank you.  I'm glowing with the light you sent my way!

I have the best of everything when it comes to my treatment.  The best facility with the best people.

I have all the best meds.  I have stuff for nausea, pain, GI distress, diarrhea, constipation, etc.  I took a combination of all of those things last week.

And you know what finally made me feel better?  YOU.  All of you!  Because you see me and you care.  By the way you touch my arm, or hug me, or put an arm on my shoulder.  Or call out to me.  Or light up when you see me.  Or write or call or email. Its medicine of the best kind.

I've been meaning to send a special thank you to someone else doing something to help our family.  Melissa is hosting a Stella and Dot catalog party with the proceeds coming to us.  If you'd like to check out the newest from Stella and Dot please follow this link Melissa/Stella and Dot.  You have a couple more days to order something if you'd like! Thank you Melissa!  You're the best!

Thursday, February 23, 2012

when the going gets tough...

Tuesday after school I sat down with the boys and tried to explain some of the changes occurring with their mom. I got to the part about losing my hair and the boys looked absolutely horrified. Colton said "No, mom, oh no. Do not walk around bald. Just go to Target and get a wig!" Ha!

I think I've taught those boys well- when the going gets tough- just go to Target.

This round of chemo has been no picnic. The steroids given to me in my pre-meds made me feel like super woman Tuesday, in a manic, edgy, crazy energy, kind of way. I managed to get 4 hours of sleep that night and still felt some super human powers yesterday morning. But then the sunburn settled into my face, my arms, my chest, etc. My eyelids swelled, my face grew puffy, and I ached everywhere.  I crashed hard last night. Today I am weak and having to stay just a few feet away from the bathroom... I will definitely let Dr. P know all of this before next week's round.

Honestly, its harder this time to mentally challenge myself to be ready to do this again next week. Somehow more is being asked and I need to find the more within to push through.  But Dr. Panwalkar also brought up the B word... in cancer world its called a "break," as in a break from chemo.  If I can get theses mets under control and reduce my overall tumor load, I could take a couple of weeks off when we try to take our trip somewhere... what's that saying, nobody said it'd be easy- just worth it... amen.

In other news have I mentioned we have what seems like a brand new dog? Crosby has been going to doggy daycare! And yesterday- they think his sister came in to play for the day. She has the same birthday, looks exactly the same, and came from the same town as he did. And the two of them played all day together. Crosby comes home so whipped he barely makes it across the threshold of the door before he collapses and snoozes away the rest of the night. The calm that has descended upon the house is a welcome respite inside of the rest of the chaos of our lives.

Tuesday, February 21, 2012

The end and the beginning

“There will come a time when you believe everything is finished.That will be the beginning.”
― Louis L'Amour

We were crazy late getting out the door today and I don't know I if ever got my head completely on straight.   It was just a glimpse of how the day was going to go.  So many things coming at me all at once my head was swimming before I even sat down.  So I sat with my pager waiting for my turn at the lab and trying to collect myself. When they finally paged me, they took me back to a station with 6 tubes for blood and one pregnancy test waiting.  The study wants its final samples from me as a parting gift.  But it meant I got to see Kathy, my research nurse again and hug her, so it was a good trade off.   It may be awhile, but I am sure our paths will cross again.  She also graciously offered to take calls with questions from me, so in a way I don't really feel I've lost her completely.

Dr. Panwalkar was his usual- in a good mood but ready to get down to business.  He carefully showed me my scans.  In my lungs, instead of just 1 small spot, I now have about 4 spots, but they are still quite small which is good.  My lymph nodes under my arm have also grown a bit.  And the spot in my brain, grew just a smidge.  But since I am off the study, and the lymph nodes under my arm are probably impinging on a nerve causing pain in my arm, we are going to zap those pesky buggers away! In fact we are going to zap my brain, my back and my lymph nodes with some targeted radiation.  Is it crazy that I feel a little relieved/excited that we may just get rid of them altogether?

So I am losing my research team, and gaining a radiation team.  In fact, one of the nurses that works in radiation is another hockey mom/friend, and the radiation scheduler, is a dear high school friend!  Could I be in better hands?  Seriously?  While all three doctors come highly recommended, my sweet friends chose one to work with me, called him about me already, and have me all lined up to see him first thing Monday morning.

But before we even get radiation underway, I started a new chemo today named Eribulin.  I will have chemo once a week for two weeks, then have a week off.  Its a newer drug thats been on the market for a couple of years, but has been known to shrink if not melt lung mets away.  I will also do my "Vitamin H" or Herceptin, once every three weeks.

Of course it comes with a bit of a drawback.  Initially Dr. Panwalkar mentioned trying Xeloda, which is a pill you take every day, and it has few side effects.  But its several thousand dollars a month, and my insurance won't cover it since its a pill.  The insurance, will however, cover infused drugs.

So I decided, I will go with the insurance covered Eribulin, and be willing to lose my hair instead.  I am neither happy, nor sad about the whole thing.  It just is.  It happens differently for everyone, so I have no idea how much or how little hair will come out, or when.

Dr. Panwalkar did ask me why I didn't call him back.  I told him I just trusted him and have felt such calm and peace knowing I could leave it in his hands, and in HIS hands.  All week last week, my prayers were pretty simplistic- I just needed God to show up.  And I can't help but feel, in the beauty of how all the details came together, he was behind all of it.

The rest of the day has been a blur.  I had people in and out of my tiny chemo hole, oops, I mean room, all day long.  The remodeling being done is creating makeshift areas for infusion and crowded waiting areas, and chaotic hallways, but we are all just doing the best we can.  In many ways, whether its cancer, or an upheaval in a work situation, or a divorce, or some other burden being carried, we all long for the same thing... for the hope of something better on the horizon.

I continue to be inundated with texts and emails and I haven't been able to respond to them at all!   Please know they comfort me, support me, and continue to lift me up and keep me going.  Love to you all...

Monday, February 20, 2012

Hockey districts and distractions

With my test being cancelled on Friday, I got to go to Fergus Falls for Nolan's opening district hockey game.  I could not have had a better weekend of distraction.  We dropped Nolan off at his game an hour beforehand and went to the one place I always turn to when the going gets tough... Dairy Queen.  Yum.

We played a Brainerd team Friday night we had previously lost to in overtime.  We were hoping for a better outcome this time, but lost to them 3-2 in regular play.  

So it was an early start to our morning on Saturday with a 6:30 am drive to Fergus Falls.  But we were treated to the sun rising up into a foggy landscape.  

Just around the corner from the arena is a wildlife refuge.  I would venture to say its a habitat for thousands of geese.  The sun was rising up through the mist and Rick and I both were compelled to stop and take photos.

It was breathtaking and these are my own photos. It was serene, tranquil and mystifying all at once.  I'm finding it impossible to feel burdened at times like this when nature is stunning and gratitude washes over me.

And then it was time for our game against Little Falls.  We beat them recently and were looking for a repeat.  But they gave us a challenge and it made for a nail biter of a game!  We tried to include photos of each player on the Peewee A-2 team, from all three of the games we played.

Lucas with the puck.

Jack winning a face off for the puck.

Skylar battling along the boards for the puck.

Max with the puck.

Parker ripping a shot with some great flex on his stick.

Parker D. skating with the puck.

Karson looking to make a pass or play.

Jake skating with the puck.

Landon with some huge flex on his stick.

Grant battling for the puck.

Carter making another awesome glove save.

Coach Zach and Coach Blake.

Mitch going in for the puck.

Sam shooting one at the goal.

Ryan S. facing off for the puck.

Christian setting up for a shot.

Ryan K looking for the play.

Nolan catching only a small part of the puck and not enough to score on this one...

But Nolan got a full piece of this one with some awesome assists from his team mates!

Mitch, Nolan, and Sam celebrating after the goal. 

Time out... we're headed into OT with Little Falls...

And we win!!! 5-4 in OT with Little Falls!  We've lost so many times in OT, this win was a victory in more ways than one!  

We then took on a team from Alexandria that we've lost to every time we've played them.  We came close to beating them in our first outing, losing in OT 2-1, but have never made it past them.

Saturday, we couldn't get past them either.  In a close game again, we lost in regulation play 2-1.  Our season ended Saturday on a bittersweet day.  

These boys showed a tremendous amount of perseverance throughout their season.  They started the year as a B squad playing an A schedule and regularly got resoundingly beat.  But by the end of the season, to me they look just like an A squad, competing with the other A teams.  They still may not have won, but they challenged those teams and competed with them.  They could not be overlooked- they were an honest viable threat.  

Congrats to the Peewee A-1 squad who went on to win the district championship game and will move on to the regional tournament.  Congratulations to our Peewee B-1 team who will also move on to play in their regional tournament!  

Almost all of our Peewee A-2 hockey moms, with the cute mini-players on a stick made by Pam,  we used to cheer on our boys!

Our hockey family continues to surround us with prayers, love and encouragement.  Yesterday Colton's team surprised us with a fundraising project they have undertaken.  They are making gloves with "spirit fingers" in our team colors and selling them as a way to raise funds for our family.  I'm really touched and honored.  I have finally succumbed to a cold our family has been passing around.  I took cold meds yesterday that kept me "loopy" but able to breathe a little easier.  So I was rather subdued, but I hope they know how truly blessed we feel by their efforts.

Thank you Squirt White team!  (sorry for the less than ideal photos) 

I'm getting ready for tomorrow.  It sort of feels like the first day of school.  A familiar setting with familiar faces, but a whole new set of lecture notes to decipher.  You know I'm bringing my "Cancer Fighting A game" regardless of the circumstances! 

Thank you for all of your uplifting and encouraging notes. I find solace and comfort in each and every one of them and wish I could reply to each one of you that so steadfastly puts my name on your lips and offers it up to God. Blessings and love to all.

Friday, February 17, 2012

"with new things continually on the horizon"

Dr. Panwalkar called me this morning.  I missed two calls while in the shower.  So he left a voicemail.

No, its not the news we were hoping for...

I appreciate how specific and direct he is in delivering less than desirable news.

My MRI scan for today was deemed unnecessary.  A scan from earlier this week showed progression in the spot in my lungs, and new spots showed up as well- significant progression is what he called it.  He already called the study, and cancelled my sedation and scan for this afternoon.   If I had questions I could call him back.  But this is what I already know...

I am off the study.

I am losing my drug.

I am losing my research nurse, Kathy, whom I dearly treasure.

It isn't that I don't have questions- I do, oh how I do.  But I almost feel like I did at diagnosis... I don't need any more news today.  I trust he has a plan.

And most importantly I trust He has a plan too.  I trust.  Thats all any of us really need.

And as if hand delivered by God, my Jesus Calling devotional showed up today in the mail. And with shaking hands I turned to today's devotion... and the words I needed, today, always today, were abundant and clear.

"Your relationship with me is meant to be vibrant and challenging, as I invade more and more areas of your life.  Do not fear change, for I am making you a new creation, with old things passing away and new things continually on the horizon...  ask Me to open your eyes, so you can find all I have prepared for you in this precious day of Life."

I will see Dr. Panwalkar on Tuesday as scheduled... with eyes wide open I will begin anew.

Thursday, February 16, 2012

What I found in the MRI tube...

Tuesday, for the second day in a row I wake to this.  Moments later the sun darts behind the clouds for the day and I am glad I've glimpsed the blazing glory of God's handiwork in the sunrise two days in a row.

I've realized a few things this week.  Like how well I understand facets of my body now.  I also have learned how to advocate for myself.  On Monday when I showed up for my CT scan, they took me back to the iv room.  I said "no, not today, no contrast for me."  The tech said "Well we don't have orders that say no contrast."  I told him "I've had two reactions, even with steroids last time, it wasn't good."  He didn't disbelieve me, but he didn't quite know how to proceed.  Again, I surprised myself by simply saying, "No, I am not pre-medicated, and I refuse the contrast."  

Apparently those were the magic words and he lead me right back to the scanner.  Wow, who is this girl?  I'm not so sure I would have stood up to him had this been a year ago.  What normally takes me 2 1/2 hours was done in 15 minutes.  And he said the images looked clear enough to be read.  

Tuesday I arrive to an empty sedation room.  My blood pressure registers at an alarming 156 and I am so awed by that, I don't even register the lower number.  My heart rate is 122 as well.  I've set a new record and giggle a bit at how hard Dr. Panwalkar would laugh at me.  I reassure the nurse its high, but normal for my first reading, and it should come down.  She gives me the 2 Xanax and five minutes later I register 125.  I can't even tell I have anxiety anymore, its so automatic and internal.  I feel fine on the outside, but my heart belies the truth of the matter inside.

I am placed on the scanner bed, a pillow inserted under my knees, headphones for my ears and I have learned to ask for a towel for over my eyes so I can't see.  I then ask the tech if he will please talk to me through the various segments of the scan.  He gives a small laugh and says, "You will be holding your breath a lot for me, don't worry you'll hear from me more than you want to."  They then place a cage over my chest area and hand me the panic button to hold onto.

I feel my arms and legs being pulled in towards my body, as the scanner bed pulls me up into the tube.  I am reminded of the orange push-up ice cream treats we had growing up, where you pushed the ice cream up through the cardboard tube so you could taste the ice cream.

True to his word, the tech tells me when it will be loud, when to take a deep breath and how long I will need to hold it.  Over the course of an hour I manage to follow all of his requests without dozing off. But in the car on the way home, I fall asleep.  I go straight to bed and sleep for 4 1/2 hours.

I awake to a delicious meal from the Kunka's and a beautiful Kellie Rae Roberts present.  I took a close up below so you can see what it says.  It couldn't be more perfect!  I am such a fan of Kellie's work!  Thank you Julie!

But there was more... I can't wear jewelry this week and I can't wait, can't wait!  Melissa, with her adorable twins, (um they're fifth grade, can I still say they are adorable? Cuz they are.) brought this while I was sleeping- and chocolate too, (smile.)  Yes... such a simple message, and yet so hard sometimes.  But I am paying attention.  

Its busy Wednesday in the sedation room.  I am not allowed to bring anything back with me.  But I've armed myself with all the words given to me for Valentine's day.  I am offered magazines dating back as far as November 2010.  Oddly my mind can't seem to get excited about "decorating for fall" as the article in Good Housekeeping suggests.

Next the nurse with the "good meds" gets paged to come see me.  Otherwise the room is filled with 5 other beds with patients getting ready to go into surgical procedures.  Its noisy and I marvel at how I will convince myself to fall asleep.

She takes my pulse and its a steady 125 and I am only slightly tachycardic at 109.  Letting go... I think...

So I begin, praying for all the requests that have come my way.  So many people, going through so many hard times.  I'm still alert when they take me back to the scanner.  I quickly shut my eyes as the cage goes down over my head.  This day is the brain scan.  Again the tech talks me all the way through, and I pray in between the sound of his voice.

He tells me they are pulling me out to inject the dye in my arm and then I will have 6 more minutes left.  As the minutes count down, I can't help myself, I squint one eye open.  And do you know what I saw?  Light.  As dark as you would think it would be in the tube, in between the bars of the "jason mask" or cage around my head, is nothing but a yellowish glowing light.  And I felt like God climbed right up in that tube with me and filled in all the spaces around me.  

I think of all the things this week has entailed and most of them would have put me in a tizzy at one time in my life.  Needles?  No way.  IV's?  Are you kidding me?  Scans and tubes and sedation?  Shudder.

And Tuesday.  Next week.  The day I will find out what all of these tests reveal.  Probably some blobs, and some spots, and a swearing bone (that has a gag order placed on it) and God filling in all the in between spaces.  I'm holding onto to hope, to light and to the grace that continues to see me through.

Tuesday, February 14, 2012

Love, humor, and light

I promise you not a moment will be lost as long as I have heart &; voice to speak &; we will walk again together with a thousand others &; a thousand more &; on &; on until there is no one among us who does not know the truth: there is no future without love. 

 Brian Andreas, Story People

I love how you all are bringing light to my life...  I'm about ready to burst into song- maybe Debbie Boone's "You Light Up My Life..." or not...  I'll spare you since its Valentine's day and all.  *wink* 

My friend Amy made this for me! All of the words derive from the word light... my photo doesn't do it justice, and I have it on my desk in my room to see when I first wake up every morning.  Amy herself is a light I am thankful for.  

There was a knock at the door this morning and this was awaiting me!  Its a huge dark chocolate bar from my friend Nancy, also a breast cancer survivor.  She was one of the first through my door last March, enfolding me in a hug and telling me I was "her person."  Her support has seen me through. Thank you Nancy!

When I grabbed the cute package off the step it caused me to look up and catch the beautiful sunrise.  Its grey and overcast now, but I tucked that sunrise into my brain to remember later in the MRI tube.  

The pain once permeating my back, has taken up residence in my right arm.  Its starts in my lymph nodes under my armpit and travels down the underside of my arm,  BUT, only when I move my arm a certain way.  And I don't know exactly which movement will trigger the zing down my arm!  It feels like the sensation you get when you've hit your "funny" bone- but I think I'm renaming it to the "swearing" bone.  Some colorful language has come out my mouth!! Its so not me and I am hoping Dr. Panwalkar has a treatment for my mouth arm!

Another survivor friend sent this in an email to me "One of my prayers during testing is please Lord get there before me."  I'm taking this with me today.  I have a ton of time on my hands in before and during the test.

And, I was wondering... do any of you have something on your heart I can pray for today or the next three days?  Leave your concern or request in the comment section and I will pray for you.  You've all done so, so many times on my behalf, it does my heart good focusing on something/someone else.

Hug your Valentines today and make sure they know you love them! 

Monday, February 13, 2012

The trophy

At the beginning of the hockey season, Colton's team really struggled. They lost game after game with lopsided scores of 10-0, 8-0, and even one that probably went into the teens but we stopped putting the goals up on the board.

They always played hard and would be joking with each other by the time they came out of the locker room. And then after Christmas they still lost the games, but they started getting shots on net. And  started getting some defense in front of our goalies. And through hard work and determination, they started scoring goals. They still lost more than they won, but they improved so much and the boys enthusiasm for the game increased at the same time.

I waited Friday night in nervous anticipation for the score of the first game in the tournament. Colton was in goal and after two periods they led 3-0.  By the third period the other team came back to score 3 goals. But our Squirt White team held on to win 4-3.

The next morning they played and after two periods they were tied 3-3. This one sounded like a nail biter. But the team went on a scoring streak and they won 7-3!

Sunday morning was an early start with a 7:45 game. The update I finally got said that they lost 6-2. The kids had worked their way into the 3rd place consolation game. Colton was back in the net. Rick took photos so I didn't get any updates. But finally the text came... Colton's team won 5-3! They were the consolation champs and even got a trophy to bring back to the association!

Rick got a photo of each player on the team below so the parents could see a photo of them here. The dog pile shots at the end of the game are my favorite. They had a low point in the morning upon losing the early game, but they rallied to go and win in the end.

Colton putting his game face on...

Using Colton's stick this mom filled in for me and took a shot at the net and she scored!  She won a 5 dollar lunch gift certificate!  Thanks so much! 

Two of the coaches...

Nathan's first goal of the season!! 

Dog pile after one of the wins!  Colton is at the bottom loving every minute of it!

The team took some outdoor photos for a team photo Rick plans to make for them.

The consolation game!  5-3 win!! 

Colton was elected to go and get the trophy and bring it back to the team!


Kids with all the moms... sigh... the space in the middle is where I would have stood... next time I say... totally next time!  

Way to go team!  

When you get lucky

When you get lucky

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