Sideways...

We're tiny minutes late, going to see Dr. Foster.  I'm ready and I'm not.  In a "who knows why?" last minute flurry I change my necklace.  Instead of my vertical cross, I choose the sideways one.  Mine has become tarnished from wear.  But, it feels right.  

Especially when it feels all wrong. 

 Dr. Foster is pleasant, but brisk.  He smiles and answers when I ask how his hockey season was and then he inquires about the boys, but quickly its back to business.  

I tell him we can "forgo" the gown if he'd like, but no, he says he'll consult his notes while I change clothes.  So I'm waiting again as I quickly change into a gown.

He returns.  Examines me thoroughly, in much the same way Dr. Panwalkar does.  He finds nothing.

He says, "Go ahead and get your street clothes on, and then we'll discuss treatment."

And then I know.  

I run my fingers over my cross.  The sideways cross, reminding me of the one He carried.  Reminding me, that He plus me, will carry whatever is to come.

Long minutes later Dr. Foster returns.  

"Well, this isn't what I wanted to say."  

The room starts to fade from my sight, as everything slows, again.  I've been here before.  

Hearing what he doesn't want to say, what I don't want to hear, what I don't want to tell you.

The cross reminds me, He has been here before too. With me.  

"A new spot has appeared on your brain, 8 mm, a distance from the old spot, but deeper in your brain."

And then we go over all the things that don't add up.  I feel fine.  I look good.  I have already had a response to the Xeloda.  Its been 14 months since we treated my last spot in my head and typically more spots would have appeared by now.

So, I gather I'm not typical.  

"Biologically, your cancer is behaving in its own way, in it's own time."

I tiny smile to myself as I recall Dr. Panwalkar's words about my PET scan as "not terrible."  

Now I can add, "not typical."  

I chose the sideways cross, perhaps, sensing my news was a little sideways too. 

I have 3 options.  

Watch and wait, re-scan in a couple of months. 

Have a new "Jason" (Think Friday the 13th movies) mask made.  Screw my head onto the table.  And shoot a one-time targeted shot of radiation at my brain. Again. 

Or, radiate my whole brain.  

I ask for some time.  To think.   And talk to Dr. P.

In the meantimes, you will probably find me near the laundry room floor, on my knees.  

Emptying... to fill again.  

"...sweetest in the crushing places..."

"Joy is like wine — it can run sweetest in the crushing places. " Ann Voskamp

I've been concerned about how this week would transpire.  Its another arena of new for me.  With the stable nature of my disease throughout last year, we worked within some well developed boundaries, knowing what to expect.  Coming off of the trial, has shuffled me back into the regular system and I am trying to re-learn how to navigate.  

This is the radiation suite where the Novalis radiosurgery machine sits.  I had the targeted 1 time treatment to my brain in this suite last Wednesday.  On Monday I started treatment to the spot in my spine, in the same room. The first day took about 15 minutes or so.  But by yesterday I was out in under 10 minutes.  The photos are fuzzy, but I didn't want to tie up the machine too long so I snapped three quick shots before I had to have my treatment.

My counts were good enough for chemo this week!  So I had chemo first and then finished exactly at the time I needed to go for radiation.  I sat down and they took me right back.  So easy.

The machine moves around me and the table adjusts me when necessary.  I stare up at the ceiling and immerse myself in the nature photo. 

My legs go over the blue cushion, and my head rests up in the mold at the top of the table.  Then I just lay there as the machine moves around me shooting radiation to the targeted spot in my spine.  

3 treatments down, 7 to go.  

*********************************************************************

She has been my best friend since high school.  Its just over 30 years now that we've sustained a friendship that has seen us through everything from boys, to cars, to college, then law school for her, grad school for me, to weddings, and then the birth of our kids.  We've ridden the high times together and forged through the tough times together.  We haven't lived in close proximity for years, but we've always stayed in touch.  

As I've battled through breast cancer, my friend, Kristi, has suffered through pneumonia on 3 different occasions this past year, including one lengthy hospitalization.  I haven't seen her in almost a year.  But we chat often and know the time will come when we will get to hang out together again soon.

So I was so surprised to have this arrive on my doorstep Sunday night.  There are so many details in it, its hard to capture them all.  But this beautiful quilt was hand made by my talented friend, Kristi!   

She even stitched "hope" into the top-stitching all around the quilt.

She personalized this square for me on the back.  

I even found us in the "best friend" phrase scattered throughout the quilt.

She wrote to tell me she hoped I felt  "hope and hugs."  But what I felt most of all, is all the love coming through.  I know this took hours upon hours of her precious time, and tons of talent and knowledge in piecing and quilting and stitching it all together. 

Its gorgeous!

Its left me feeling like the luckiest "best friend"out there.  

One year ago today...

One year ago today, I received the life changing news, that I had breast cancer.  Its officially my Cancerversary.  As I look back through the journey, I am overcome with such a diversity of emotions its hard to know how to process and articulate where I was and where I am.   Mostly, I am just thankful to be here, and awed at the abundance that has accompanied the difficult times.  I have been blessed many times over.

So in one of those "perfect timing" moments... this arrived in my email box.  My book club girls, with the help of my husband and his video guru, Ben, told my story for a contest.  The Pay it Forward contest is sponsored by State Bank, here in town.  March 16th was the last day to submit videos.

April 2nd a panel of judges will pick 6 finalists from the submissions, and then those 6 videos will be open for voting by the public!  Five of those finalists will win 1,000 for their submission, while the winner will win 5,000 dollars.

To view the contest you have to go to Facebook and search the group Pay it Forward Fans' Choice, and hope our video makes the cut on April 2nd!  If it does, I'd be so honored to have you vote for us!  I'll let you know what happens April 2nd...

I came home last night in a fog of epic proportions.  We decided on two Xanax before the MRI and 1 more for good measure before the simulations began.  So I prayed for all of the requests that came my way, waiting for the meds to kick in. The meds did the trick.  I have very little recollection of most of it.  The mask was hot on my face and I squeezed my eyes really tight.  And I prayed. The tattoo on my chest is a dot... thats it, so tiny you have to squint to see it.  So I kept on praying and peace descended.

Over and over I prayed.  I brought a sticky note list of all the names given to me, and over and over I prayed.  And suddenly I was done and ready to go home.  

We arrived home to a meal waiting in a cooler on the front step!  And  a Superman t-shirt for Rick that had us all chuckling!  Thank you!

The beautiful neighbor that sent me a card nearly a year ago with the name of the herbalist I want to go and see, arrived with dessert pizza that was a huge hit with everyone!  Thank you! 

And then Rick sat down and showed me this video.  I've said before I have the best book club ever.  I can't make it through without being reduced to tears.  Every. Single. Time.  

Amy, Shauna, Heidi, Pam, Heidi, and Suzanne, (Nikki)... its a rare treat that we get everyone together. But to have you come together and honor me and my family in this way, touched me so very deeply.  Thank you... I'm overflowing with gratitude... and lots of tears! 

I went to bed at 5:30 last night.  I awoke at midnight, to Superman helping me out of my clothes and into pj's for bed.  I mumbled to him I was dreaming... I had this crazy dream the girls from book club made a video about me... he chuckled and told me to go back to sleep.  

    

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.  

Whew.  

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! 

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...