Thursday, February 22, 2018

Scans and surgery and Dream. State.

It's days after I had my stent replaced and that is me in the photo above, late the first night.  I was actually allowed to go home from the hospital by early afternoon.  Around every corner that day, it seemed a small gift awaited me. 

I've learned through time, to try and not have too many expectations.  I had been told to arrive at 6 am and that surgery would be at 8 am.  I had been barely settled into my pre-surgery room when Dr. Williams arrived to see me.  He had already concluded his first surgery of the day and it was only a little after 7.  He assured me I'd be going down soon.  We had very little to say as this was my 4th procedure by him and we're pretty well versed in how things go.  He was full of an understated ease, that mimicked my own calm at the time.  While everything is truly very straightforward, you still know you're presenting yourself for something quite serious.  I have a large mass in the area where the stent goes, and it's proper placement is key to helping my bladder and kidney work smoothly together.  But we don't elaborate those details.  He simply says he'll see me in a bit and off he goes.  

The operating rooms are on the second floor, just a short trip down through the elevator and down some long hall-ways.  Somehow I was so relaxed I didn't need any pre-meds to calm my nerves before going to the OR.  I was chatty with everyone as they began getting me ready for my procedure.  But as soon as a little "versed cocktail," was added to my port, I knew the "party" was about to begin.  The last little bit I recall is that they were going to cancel my need to go to the PACU unit since I was such a light weight and wouldn't require high doses of drugs.   I would go directly back to my room after the procedure if it went well.

Sure enough, an hour or so later I awoke to being back in a regular hospital room.  At the mention of food I agreed to some jelly toast and was soon sipping some coffee and munching away.  Rick had managed to go down to the cafeteria and was surprised to receive a call that I was back in my room just as he was getting his food.  He finished eating and came back to sit with me.  He shared that Dr. Williams was pleased with how the procedure went and also happy with how the stent looked when he took the old one out.  He also shared with Rick that he feels bad that I have such difficulties to face, and yet he admires how I remain so positive. Based on everything being in such good shape Dr. Williams has decided to move me to a 4 month rotation so that I can have more time in between procedures as long as I continue to do well.  

It wasn't long and I managed to get up and walk on my own.  As soon as that was checked off the list, I was told I could dress and prepare to go home!  At every juncture that day, it went far more smoothly than I had ever experienced.  I felt at ease for so much of it, despite some discomfort and side effects of the anesthesia, I still felt it was all manageable.  At home I managed to sit with my phone and finally see the outpouring of love and prayers on facebook from so many friends and family.  I was thoroughly touched and moved beyond words.  The multitude of prayers and well wishes truly were answered and blessed me so.  How else can you explain how well it all went?  My tiniest concerns were met and taken care of- truly I was in the best hands.  His hands.

My scan results even showed me the stent the week before last.  Its such a tiny piece, but its surrounded by a mass of breast cancer tumors in my pelvic region.  Fortunately?  The mass was actually less pronounced in the most recent scan, and overall looked smaller.  In fact, the entire scan showed less prominence of cancer in many areas.  Dr. Panwalkar was pleasantly surprised at how good the scan looked in most areas- a couple of areas were the same and some a bit worse maybe, but overall good.  He hesitated in how we should proceed with treatment, but ultimately decided that since I was handling the side effects pretty well, we'd stick with the current regimen.  So for the next 3 months I will continue on with the combination of 4 drugs infused every 3 weeks.  I'll continue to do 3 booster shots and I promised Dr. P I'd call if I had the slightest change in how I was feeling. He had looked so serious when he arrived at our appointment, but was more cheerful and pleased overall, when he left that day.  

I've managed a few photos of some of the blessings that have come our way.  Beautiful plants with just the right words displayed on the crate- so uplifting the day it arrived.  Plus the box of cookies that came all the way from Georgia!  They were delicious and I was so touched someone took the time to mail them off to me.  The flowers that arrived one day,  gave me such a lift.  I remember how bright the sunshine was and how "springy" it felt that day.  The gift of the blanket just topped everything off.    

I was groggy and recovering from surgery, and the best possible way to rest is when you have a blanket made that is called "covered in prayer," by a woman who was a survivor of cancer herself.  I'm definitely living proof, that blankets can cover our physical needs, but it can also help cover our emotional and spiritual needs as well.  A few days later another beautiful hand knit blanket arrived- ti is equally as warm, and done in some bright beautiful spring colors, I love wrapping in it early in the morning.  Thank you to all who have blessed me in so many ways.  It helps me feel like there is a continued purpose to my life, and that is the best gift of all.

I've been reading the book, "Option B, Facing Adversity, Building Resilience, and Finding Joy," by Sheryl Sandberg and Adam Grant.  She says "resilience comes from deep within us and from support outside us.  It comes from gratitude for what's good in our lives and from leaning in to the suck.  It comes from analyzing how we process grief and from simply accepting that grief.  Sometimes we have less control than we think.  Other times we have more.  But when life pulls you under, you can kick against the bottom, break the surface, and breathe again."  

This is how I live my days, with the support of all of you.  I'm kicking and breaking the surface, and breathing yet again.  Thanks for coming along with me! 

The first episode of the show Dream. State. aired last week.  We had decided to watch as a family and as the boys arrived home, the show began.  We were all glued to the television when suddenly it stopped after just a minute or so had aired!  And it didn't come back.  We were so perplexed and disappointed.  But luckily, Nolan discovered a link for the episode on Youtube and we were able to stream it to our tv.  Wow!  The first episode was so well done!  We watched twice that night, pausing and remembering as we went.  There were so many special moments with Nolan in it throughout the episode- over a dozen times we saw him or one of his goals, or an interview he had done with his friend Ethan, when they were really young- so many great moments.  

Here is a link to the first episode on Youtube:  Dream. State. 

The second episode is scheduled to run on FSN tonight, right after the Wild game.  We have been told our story will not be in the second episode, but has been moved to the 4th episode to run at a future time.  All of the shows should be able to be viewed on Youtube after they've aired on tv, if you don't have access to the tv show.  

Thursday, February 1, 2018

Dream. State.

Dream. State.  It's the name of the television show that is following our boy's hockey team this year.  We've seen their production crew both on and off the ice at the Sports Center.  One of the young men met with Rick to talk about using some of his photos from over the years as part of the show.

But then he received another email request.  Would we consider doing some interviews with the crew about our family story?  They expressed not only talking to me about my journey with cancer, but also wanted to talk to our boys, and to Rick.  

Through a series of messages we picked a Sunday for the crew to come to our house.  The boys had been traveling for hockey and had arrived home late the day before.  So we let them sleep in a bit and didn't get started until 11 am.   We truly didn't know what to expect.  We anticipated it'd last an hour or so.  

I had just had chemo the Tuesday before, and was just starting to feel better.  I prayed long and hard that I could feel up to the task of being on camera and sound ok in the interview I would do with them.  I was fully prepared to live up to the honor of sharing my humble story once again.  I felt like I had so much to give.  I'm always awe-struck that He seems to find a way to help me live with purpose, by sending these huge opportunities to me time and again.  As confining as it can become to physically live within your 4 walls, its amazing how much your spirit can grow past those very walls.  I was ready to give... 

But I had no idea just how much I'd receive instead.  

The crew spent a good hour or so just setting up all of their gear.  I forget how many cameras there were.  At least 3 were running most of the time.  And their lights were strewn about.  Each one of us was given a microphone that we taped to ourselves.  Then the questions began.  

I got to go first, with the other 3 watching on.  I know we talked for almost an hour.  But the focus of our talk?  Certainly wasn't about cancer.  Its funny how much hockey has been more pervasive in our every day lives, and how easy it was to lead the talks back to hockey throughout everything.  Its so clear that hockey is more than a game, more than a season- its definitely a way of life that is lived both on and off the ice.  

And so many of the people that you started this journey with, are the very people that are still present in your life all these years later.  I was both drained and exhausted when my part was finished.  But I was filled up with joy and good memories, and pure satisfaction of just how fully we've lived our moments throughout all of these years.  But that's when the biggest gift started to unfold before my eyes.  The boys were starting their interviews.  And part of what they were asked to share was about how Rick and I had contributed to their hockey life.  I won't forget the magnitude of those moments.  The raw emotion they spoke with.  The words that every parent longs to hear.  We laughed and laughed at all the fun stories the boys remembered.  And relished the good memories that prevail to this day.  I know parts of this could be used for the show.  While the tears streamed as I stood just outside the doorway listening in, the gift of hearing my boys speak these words was simply priceless.

The young men then sat down with all of us and we continued to share stories with them.  As they slowly began to wrap up and pack their things, I glanced at the clock.  They'd been with us for 6 hours!  For 6 hours we had talked non-stop about our hockey life, and we felt like we barely scratched the surface.  We re-told the past 15 years of our life, and it was such an honor to have it all captured on camera. The whole afternoon was a wonderful culmination of the journey we've been on ever since the boys were in diapers.  

I was literally spent for days to come.  I have no idea how I got through the taping as well as I did.  Its clear that He saw me through.  Those prayers were answered.  The grace rained down in abundance on me that day.  

The show, Dream. State., will air February 13th on Fox Sports North.  Its a 6 week, 6 episode show that follows the Moorhead boy's hockey team.  We were told our family footage would be aired on the second episode.  We can't wait to see it!  

A lot has been happening as far as my cancer treatment goes.  Dr. Panwalkar has been very busy in researching and finding another treatment for me, despite the fact I haven't physically seen him in awhile.  I've gone in twice to fill out paperwork to help me secure access to a new drug should I need it.  I've both had to qualify for the drug medically, and financially so its been no easy process.

I will have a PET scan on Monday, and see Dr. Panwalkar on Tuesday of next week.   If my scan is stable or shows tumors shrinking I'll just stay on my current treatment.  If I show progression than I would start taking a pill called Keytruda.  You may see advertisements for it on tv.  It's a new immunotherapy drug on the market that shows promise in heavily treated patients like myself.  I'm so grateful to have qualified to have this drug when the time comes.  

The very next week, on Valentine's Day I will have another stent replacement surgery.  I have so much happening over the course of the next two weeks.  I will be at the clinic or hospital nearly every day those two weeks.  Between all the booster shots, the pre-surgery labs and exams, infusion and PET scan- I'll be stretched to handle it all.

So I'm still leaning in to all the uncertain and scary times ahead.  Each day is different.  Will I have break through pain, or not?  Will I need the wheelchair or can I walk?  Can I keep my oxygen saturation high enough, or not?  Will I be nauseous?  Tired?  Weak?  Worried?  Likely all of the above.  

Still- my days fill in between with support in all kinds of ways.  Meals arrive on a weekly basis.  Treats and goodies are left by our front door.  Cards and letters with encouragement arrive all the time.  I feel blessed despite the hard things we continue to face daily.

So to get through the next couple of weeks, I'm turning to the best coping method I know.  Taking myself out of the center of it all as much as I can.  I'd love to focus on you!  Will you share your prayer request with me for Monday?  How can I pray for you?  Please leave your requests in the comments below and I'll make a list to carry with me the next couple of weeks.  

~all shall be well~

When you get lucky

When you get lucky

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