filling the pages

I woke up to hear Rick's voice whisper to me "Happy Mother's Day."  I smiled as he sauntered off to make coffee.  But then I went to sit up and my stomach lurched.  The nausea washes over me in a deep surge.  I begin to cough,  and cough.  "Oh no, I think, here it comes!"  I then begin to heave and gag.  Vomit looms as I clutch at the side of the chair shifting my position.  Its a good 10 minutes before it unceremoniously subsides.  I'm sweaty and my heart is beating fast.  But I didn't vomit this time.  I let my stomach settle and am about to get up to go to the kitchen when the movement once again sets off another attack.  Here we go again.  And yet, just another few minutes and I'm able to sit and sip at my coffee as if nothing has happened.  This time I got off lucky.  Earlier this week, I had 3 hours of repeated vomiting and heaving and I was unable to do anything else that day, even when the grips of it all left me spent.  But we managed a few hours of watching as Rick planted flowers outside in my flower beds, and bought a vase full of fresh cut flowers for my to enjoy inside.  My family was in and around me throughout a busy day, and I loved how they met me right where I was.

But when I highlight these types of yucky events for Dr. Panwalkar?  Theres nothing he can offer me.  Compassion and concern line his face, but his words are sparse.  "You're in unchartered territory.  I don't know what we can do for you."  His words referring to my PET scan was that it was overall "much worse."  I had many new areas of progression throughout my system.  The part that likely has to do with the vomiting or vaso vagal spells, is a tumor or mass that is by my colon/bowels that is triggered when my bowels move.  It puts me in a precarious situation most of the time.  How do you go anywhere when these symptoms crop up announced?  And they're so unpleasant to have and for anyone to witness.  Rick is such a trooper, offering Kleenex or water, meds, or Nausene to see me through.  But these spells won't likely go away on their own.  They loom in front of me all day long.

Dr. P simply says we will switch my treatment to to the immunotherapy drug called Keytruda.  I mistakenly thought it was oral, but its infused.  I had my first infusion two weeks ago and it went well.  I simply don't feel well, despite the new treatment, not because of it likely.  

So how do you plan your day?  I hover between my chair and the bathroom mostly.  I'm just hanging in there, trying to string together a few hours that I feel ok.  But its a struggle.  I've had to cancel many visits at the last minute, as my stomach sits churning.  I will see Dr. P again in a week and will report the worsening effects but not sure there will be much we can do if I want to continue on with treatment.  Its a hard place to be.  And its why I'm so quiet in this space.  I still long to know that somehow I have something to offer in this time I've been given.  The boys seek me out daily and I love all the time we spend chatting away.  They're affected by all of this, and yet resilient at the same time.  I love them so.

As a couple of days pass, the nausea bouts are still prevalent but I get through them more quickly it seems.  But now its my shortness of breath concerning us all.  I'm quite swollen in my legs and feet and my arm on the right side.  Maybe its affecting my lung as well?  Despite using Oxygen supplementation during my waking hours, I still get so short of breath all of a sudden.  I will find out more when I see Dr. Panwalkar on Tuesday.  But that is as far out as I can look right now.  

I'm grateful for the overwhelming abundance that has found a way through our door.  Whether its a card, or the gift of scripture cards, or food, or a short visit- it all adds up beyond measure.  It's hard to make "plans" for anything.  And I have my days of not being fully dressed and made presentable, as my house sits in varying degrees of disorderliness.  But we open our doors when we're able and pray others can avert their eyes from the mess,  and just see me.  I'm still in this shell of myself peering out through those swollen and hollow looking eyes.  But, I'm still here.  And I'm eternally grateful for all who so tirelessly work to meet me in this space- often so new for both of us.

Love and blessings to you all!

hope is medicine

I have sat down so often, writing a little bit of an update, but it never feels quite finished so I wait.  And begin again another day. But no two days are alike anymore.  I'm in a continuous cycle of dealing with new physical challenges each day it seems, and I just don't ever seem to go back to "normal."  Its a "new normal" everyday.  But here goes just a little of what it's been like. 

 I last saw Dr. Panwalkar on a Tuesday in late March.  He teased me as he fired up the computer saying "3 whole weeks have gone by and I haven't heard you ring my phone once!  How can that be?"  

It sets a pleasant tone instantly and I banter a response right back.  Our whole visit is a series of questions and answers and I try to affirm each time that really I'm doing ok.  Until he asks about shortness of breath.  And between Rick and I we paint the picture, without realizing the ball we've set in motion. 

I just can't always get very far walking, without running out of breath.  And I certainly can't clean, or dress, or do normal activities for any length of time without also struggling for air.  

Dr. Panwalkar assures me we will get to the bottom of it with some help from the Pulmonary department.  While a simple xray doesn't show any big differences from the last one, Dr. P still wants me to have testing done.  As he walks me out to infusion that day, I happen to remember and whisper to him, "I just passed my seven year anniversary since diagnosis on the 16th, thanks to you."  He smiles big and wraps an arm around me as he ushers me into a seat carefully.  He whispers right back... " and we'll just keep hoping for more..."  His voice trails off as he turns to leave.  I sit, flooded with warmth and hope.  

After chemo, I get a wheelchair ride over to the Pulmonary Clinic and proceed to get hooked up to a device that will track my airflow as I simply walk up and down the halls.  I take off walking and seem to do just fine, but after several trips of walking in a circular fashion, I'm short on breath and cue the technician its time I sit down.  She grabs a nasal canula and oxygen streams into my lungs through my nose.  I sit breathing deep as she announces that my oxygen saturation has suddenly plunged to the mid-80's.  My eyes search her face for an answer to what this means. Oh, you failed the test, she says.  But that qualifies you for oxygen therapy.  

Just.  Like. That.  And I'm home, on oxygen therapy.  Its a long appointment with a respiratory therapist at our house.  He first goes over the concentrator that will sit in the living room area with ample hose attached to a nasal cannula for me to wear.  Then he goes over the unit I can wear across my body.  Except, I instantly discover its quite heavy for me and cumbersome to wear. It exacerbates the pain on my left side, no matter how I situate the unit.   It'll take some maneuvering on my part to be able to wear it out.  

Over the course of the last couple of weeks,  having oxygen therapy has taken some time getting used to.  I don't need it around the the clock.  I don't need it if I'm just up and walking to and from one area  of the house to the next.  But as the day goes on and I need to perform some activity, I require more use of the O2.  Its quite drying to the lining of my nose, despite the constant post-nasal drip I have as a side effect of my chemo. And I've had some headaches that may go with it.  But otherwise its a pleasant feeling not to have to fight for air at times and the panic that can go with it when you don't feel like you'll recover your ability to breathe.  

So just when I felt like I had the breathing part figured out, last week I couldn't shake a sense of light headedness.  I had to go into Roger Maris for a booster shot and told them how I was feeling.  The nurse could tell something wasn't right with my color or my blood pressure.  Soon Lori was sent back to see me, and she went to run everything past Dr. P.  They felt I was dehydrated and needed some iv fluids at the infusion center.  I was lucky, a cancellation had just occurred and I got to go right in.  After a good 1 liter bag was infused a couple of hours later, I was cleared to go home as long as I took it easy and rested.  We just had to laugh that it seems lately its always something, but what will happen next?  

It took me awhile to bounce all the way back.  My counts may have been pretty low and had to restore themselves with help from the booster shots.    In the meantime, I've also been dealing with some episodes of a vasovagal response.  I don't actually pass out, I manage to stay conscious, but my stomach heaves for several intense minutes.  I have intense nausea and it can end in vomiting repeatedly for awhile.  I sweat profusely and shake and then after a good 10 minutes or so, it passes quickly and I recover.  But when and where these episodes may occur, is unpredictable, and hard to manage.  Add all of these things together and you can see why no two days are the same anymore.  

So each day, I try to just succeed at a basic level.  If I can dress, eat, get up and be with my family, etc., that is the aim of a good day for me.  But sometimes, even those basic things can just be a tall order.  Its the way things seem to go right now.  And that is where all the wonderful things you send me, help more than I can say.  I so often have to reach outside of myself, clinging to the bits and pieces of hope that are thrown my way.  I love the Anne Lamott quote... "Because hope is medicine..."  Its definitely something I've come to learn from my one word for 2018. 

We finally got to see the airing of our story in Dream. State.  Wow!  They did such a great job of piecing together a wonderful story about our family.  We have continually felt so blessed and honored to have been asked to be a part of this show.  I tired embedded the show below and hope it works if you'd like to view it.  Our part starts about 3 minutes in and runs for a few minutes!  I'm so proud of the boys and how well they shared from their hearts about what they live on a daily basis.  It was very fitting the show aired at the same time I passed my 7 year cancer survivorship milestone!  

Thank you to everyone who has sent me notes inquiring about how I am doing.  The outpouring of care and concern continues to bless us and humble us.  Meals still show up at our door and nourish us both physically and emotionally.  Plants, flowers, cards, letters- they bolster us so and we can't say enough thank you's for all that is done for us!  

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.  

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~

My one word for 2018

 My word for 2017 is love.  I've been reflecting quite a bit on all that I learned about love this past year.  I think the biggest lesson to shine through was simply that being open to love, allowed me to fully see it and feel it in all encompassing ways.  In the everyday, the ordinary, tiniest moments, love can be found.

When I was growing up, we didn't express love to each other by saying, "I love you."  Whether its our Scandinavian heritage, or just old family traditions, love was shown, but not overtly expressed other than on a momentous occasion... and often privately.  Oh how I longed to feel it at times.  But maybe it was there more than I saw?  

I really tried this year, to express my love in ways that reached far beyond the boundaries I grew up with.  You so often have to give away the very thing you desire.  So, I said it, and tried to show it, to all those around me.  It was far easier than I anticipated and seemed to be reciprocated on such a grand scale.  I realized, I had been able to express it for so long, I just had to lean into it, and honor it, and it was such a staple to my every day existence.  My own boys have no trouble at all expressing their love towards me and others. The "I love you's" roll off their tongues and hugs go right along with saying it.  It touched me so to see it lived out in this way.  I hope that its me, living my legacy- not just leaving one- but truly showing my boys how I want them to go on.

But now I'm pondering my 2018 word.  What word could possibly be the same as "love?"  I've just had to stay with my practice of paying attention to what comes to me and consider the deeper message often shown in our day to day activities.

And the word that shows up over and over again lately?  Is hope.  I even received a journal, in perfect timing, as my old one is closing in on another 1,000 gifts I've counted and I need some more pages.  And there it is, "Hope anchors the soul..."   Hebrews 6:19

And then this quote I stumbled across while reading really resonated deeply with me...

Hope is important because it can make the present moment less difficult to bear. If we believe that tomorrow will be better, we can bear a hardship today. 

Thich Nhat Hanh

So often you all ask how I'm doing...


Hardship has entered my world on a daily basis.  Just sitting here to type is somewhat daunting.  Words don't flow out of me like they once did, and the chemo brain stifles what I truly would like to convey.  How do you walk that fine line between saying you're essentially doing ok, but also being real about parts that aren't ok?  And that the next day, it all flips and new things aren't ok, but other parts are now better.  It just depends on the day.  Some days I eat, others I can't.  Often I sleep, but then days go by without a single nap.  Pain is managed, but then suddenly it's not.  I seem to shift in and out of these states often throughout my days.  And yet, every time something new is lobbed my way, so many of you show up with answers.

My blanket with heat has seen me through so many hockey games.  I can fit my heated coat, under my down coat, and the blanket can fit on top.  And then when my feet went cold?  Rick's Dad, Jim, bought me socks with batteries and now my feet can stay warm too!  Hope just keeps showing up seeing me through hockey game after game, I feel so blessed.

Our Christmas was a mix of both of these things.  We had a wonderful cousin's gathering and I managed to go for a couple of hours.  We laughed and talked and shared good food. But then I was spent, and needed a day or two to recover.  I wouldn't trade it for anything, but its hard to gauge where best to spend my energy day to day.  We managed a wonderful night of Christmas Eve at home in front of the fire, but I couldn't go to church.  The boys hadn't asked for very much and we had a simple gift opening and we were all surprised by how well Rick did with being the main Santa Claus this year.  My one big task?  Was to mail out Christmas cards and I enjoyed each moment of it.  I wrote notes with some and delighted on reading letters from others.  I cut way back and didn't get one out to all, but I was so happy to devote my time and energy to the ones I could do.   But that was all I could muster energy for this year.  And despite what we couldn't do?  Nolan whispered in my ear, "Mom, was your Christmas a good one?"  His big heart on display for me, was gift right there.

What really blessed us was all the wonderful gifts we received at our doorstep, or in the mailbox!   The letters some of you wrote that touched me through and through.  The gifts that were so thoughtfully delivered to us- from plants and fruit baskets, to baskets with Christmas goodies and books, and music and kindness all wrapped up in a big bow.  And when our washing machine needed to be replaced?  Gifts of money showed up and helped us do that very thing we so badly needed.  Our hopes were met yet again.

Its one more gift that choosing "love" has taught me.  Family can come to you by means of genes, and by means of community that grows up around you when you have hardships.  I not only have a family, but I have a hockey family, and a neighborhood family, and so many others with people that I can sit and chat with, and commiserate with, and laugh with- and it doesn't matter the origins of the relationship. It all feels like family to me!  If it can happen to me, I know it can happen to all of us when we have a great need for community.  We all just need to be there for each other in whatever ways we can.

I had chemo on the 26th, and am trying to fully recover.  I get pretty worn out and nauseous for a few days, but then slowly start to rebound and am pretty stable after that.  And I just try to stay in these moments, in the here and now, taking in what I can, and giving what I can.

Theres still purpose in my days.  The boys come to me daily, sharing with me their own troubles, and kindnesses that others have shown them.  They don't hide their feelings, and let me see how happy they can be, yet how sad it can feel to them as well.  They're both going through some tough things, outside of me and my sickness, that I can't do anything about. Its pulled us all closer tougher and we're searching for ways to make sense out of what they are enduring- but it hasn't been and won't be easy.  Hope is all I have to offer them as well.

 It was a somewhat teary good bye as they loaded up for a 3 day holiday hockey tourney a few days back.  I wouldn't be able to attend.   I just try to assure them I'd be here when they return, and they should go off and Nolan should play hard and Colton should manage the team well.  Then, I anchor myself in hope. Its what I have right now and its something that I'll hang on to as long as I can!

living my moments

Each time I log in here, I'm at a different point in my life it seems.  I have so many posts started, and not completed because the news is ever changing, every day.  And it seems lately, I shift from having a good day, to a not so good day, rather quickly.  Or a not so great stream of days, turns into a run of better days.  I just never really know, day to day, how I'm doing.  Its easiest to say "I'm fine," because there isn't any other suitable response it seems. 

This past Sunday, the infusion nurse bringing me into the room I would use, commented on how I didn't look like my usual self.  The pain I had been enduring for a few days had taken its toll, and with all the resources I have at home, I'd reached the limit of what I could do.  She could see it in my eyes.  So I had called the oncologist on call who had said I should go right into the infusion center and get iv morphine to better manage my intense pain.  I was thankful I didn't have to go to the ER, and managed a short trip to the infusion center.   But by Sunday night?  I was feeling up to having a visitor.  My friend Katy came, with a stash of food, and good cheer and a sweet soul all the way around.  And I was in a groggy haze of meds, but so happy to just sit and chat away with her.  She met me in those moments and helped me feel comforted and loved and I deeply appreciate that special visit.  I went from one extreme, to the other, all in one day.  

But the one constant I can always count on?  Is how all of you, like my friend Katy, show up for me!    Just look at the friends below who came for a night of fun by the fire with good food and drinks, and wonderful conversation. I was definitely feeling well at this time. Our hockey community surprised me yet again with the gift of a stadium blanket, that has a battery attached to it and heats up just like my coat! They brought it to me this night and I was blown away with their generous gift for me.  I used the blanket just last week, and it saw me through a chunk of the game and even with a low battery the warmth was just enough to help me sit comfortably all the way through.  My neighbor, Darla, brought me to the game and we were both feeling great after seeing Nolan line up right in front of us, and score his first goal of the season!  I'm so grateful and feel so blessed by the giving spirit of so many friends and families who show up, time and again, to help us move through this crazy roller-coaster of a life that we're on.  

From cards that arrive in the mail, to visits from people that bring food.  One acquaintance brought a pillow with the words "all will be well," on it.  She had just learned how to make pillows and it's beautiful.  I also received a new journal from a friend visiting from the cities, with many other goodies. I'd love to show pictures of it all, but I'm afraid I'll leave someone, or something out.  I surround myself with all of these things and they are tangible reminders of just how much everyone is supporting not just me, but our whole family.

I snapped this quick photo of the boys heading out on the road for their first hockey trip of the season.  I just wasn't up to traveling and was grateful I could watch the games streamed on my computer.  Colton on the left, a freshman this year, is a team manager for the Spuds hockey team, and Nolan is a junior forward for the team.

After my crazy adventure through the infusion center on Sunday, Dr. Panwalkar showed up at my appointment Tuesday, with concern written all over his face.  We had quite a somber, although thorough visit with him.  He too, can see the difference in me at a deeper level.  He was filled with compassion and concern.  He said after listening to my lungs, that they sounded like I was much more limited in air movement on the left side and wanted an X-ray done before I left the clinic that day.  He'd go ahead and get a procedure lined up for me to have the lung drained of any fluid, if necessary.

I was surprised by how quickly the nurse's aid took me back to the department for the X-ray and then how quickly they took me back to get it done.  Dr. Panwalkar managed to read the film before I left and felt I didn't have too much fluid, so no draining would be necessary.  I just had to be careful not to push myself too far past my limited ability to breathe deep.  Too many tumors on top of old radiation damage is taking its toll.

But I had tolerated the last chemo session pretty well.  My white blood counts were low, but I'll be getting a series of 3 booster shots next week to help them climb back up again.  We also bumped my morphine up a bit more and added in some Advil for inflammation.  All throughout my visit with Dr. P he was very in tune with me and took his time answering each little question I had.  I'd lob a concern out to him, and he'd ponder it carefully and volley back to me with feedback I could use, or suggest something to try.   But Dr. Panwalkar seemed to be able to tell, I didn't need to know more than what was facing me right now in this moment.  Its too tricky to try and look out a ways when day to day everything can change so fast.  Meeting me in the moment seems to be the best way to do this right now.

In one of the first books I read about a woman's journey through cancer, the author, Katherine Russell Rich told of her checklist she used to determine how she was doing.  She would ask herself, "Are you in the hospital?"  "Do you need help with breathing?"  "Do you need help getting up and walking?"  If she could answer no to these questions, then she was doing just fine.  These have stayed with me and helped see me through what I face day to day.  We could all use a daily checklist to help determine how we're doing, couldn't we?  

One of the other new found treasures I've been reading is Oprah Winfrey's book called "The Wisdom of Sundays."  I've often pondered what has shifted my focus to taking in the small moments and treasuring them in a new way.  Why is this such a big presence in my life?

Page 16.  I just had to turn the page to number 16 and the words resonated so deeply with me.  I've spoken before about how I just want to expand my time and not worry about extending it.  I use all my senses to hear, smell, touch, and taste all that is offered in any given moment.  Gary Zukav wrote about just this experience saying "As people become multisensory they begin to become aware.  Millions of us are acquiring that sense that life has a meaning, that I have a purpose, that I am more than this mind and body...  Multisensory perception does not make us more kind or patient or caring or less angry.  It makes us more aware.  And when you get that sense, the spiritual work begins."  

The more pared down my day to day life becomes, the more I can allow myself to grow spiritually.  I'm working on that.  I have so much to learn just right here in the now.  So I just keep trying to live my moments as fully as I can.  

On the outside I may look fine.  But it won't always reflect how I am physically doing on the inside.  Maybe thats ok.  Maybe I can be ok in some other ways, and not worry too much about the rest.

Thank you for coming along with me!  My gratitude is overflowing for the abundance I truly feel I have.  

answered prayers

My quick cell phone photo doesn't do the cookies justice.  They're bright pink and white and were a complete surprise arriving at our door last night.  Thank you for the sweet treat to the angel who made these- they sure were a day brightener!  And just as yummy as they looked.   So was the meal that arrived ready for us to bake tonight- thank you Bonnie- I was so touched by your thoughtfulness.  I really feel when these things happen, they truly answer some of the prayers so many have said on behalf of our family.

I know I was in search of the things I could count on last week, when so much new was cropping up, so fast.

I met with an OB, Dr. Keup last Wednesday.  She had planned on trying to do the biopsy of my uterus in office that very day.  I was so unprepared for it, but tried to steady my nerves as she prepared me for the procedure.  But I was in discomfort right from the start.  No matter how slight her movements were, it was incredibly painful.  She stopped before she really had a chance to start, saying she just didn't feel she'd get a good sample based on how much atrophy had settled in after my ovaries had been removed.  She needed to have me under anesthesia to get a good amount of tissue.  

So I told her about my scheduled stent replacement the following day,  which I had just found out would be the first surgery of the day at 645 am.  I had to arrive at the new hospital by 5:00 am Thursday morning.

Through a series of phone calls in which Dr. Keup was able to talk with both Dr. Panwalkar and Dr. Williams who was doing the stent procedure, they managed to come up with a plan to do the biopsy right after the stent replacement.  The second surgery pieced itself together in such a seamless fashion, it was hard not to feel as though bigger hands were truly in charge of how this all would go.  But it didn't stop there... the biggest surprise was about to happen the next morning. 

Rick drove me to the hospital early Thursday morning.  I was called back to the pre-surgery room shortly after our arrival.  I had felt like I was walking through a hotel lobby on my way up to the 3rd floor.  Everything had such grandeur to it.  It was a lot to take in and I found myself quiet and reflective.  

As I was being prepped by a nurse, a whole crew of people streamed in and out of my room.  I hadn't been told to take my scheduled morphine and the time had come and gone, so my nurse wanted the anesthesiologist to come in and see if she could help.

Dr. Goswami came in and introduced herself.  But she lingered as she spoke.  "My name often precludes anyone from knowing who I am, she said, coming bedside to speak with me.  There was a warmth she exuded underneath all her scrubs.  She told me she wouldn't be following me to surgery as she had been at work all night and was just concluding her shift.  She continued to speak.  "As I read your history last night, I had an idea of who you might be.  You write a blog that my surgical tech follows.  She even sent me a link to a post you had written that included Amit- Dr. Panwalkar-and it was so kind, I just wanted to thank you.  You see, Amit is my husband, and you spoke so nicely about him ... I just wanted to introduce myself so I could thank you. 

I was flooded with pure joy!  Out of all the doctors I could have been assigned to, Dr. Panwalkar's wife was the one overseeing my care at that time.  I was so awestruck in such a way that I hardly said any words to her.  It truly felt like the presence of God in that moment.  That she took the time and went out of her way to talk to me was so gracious.  She went on to be sure I got a dose of morphine before she left to go home.  She said she doesn't often tell her patients who she is because they tend to turn the conversation onto her or him and she feels the focus should stay on the patient.  

I'm not sure why it had such a big effect on me, but I settled in and felt peaceful waiting to be taken back for the surgeries.  Both procedures went well, and despite a lot of bleeding which is common with the kind of biopsy I had, and some discomfort, I was able to go home late Thursday afternoon.

I'm not sure why it is that small things continue to speak to me in such big ways.  Its a very simplistic viewpoint that I hold.  But I had to feel it was God's way of showing me that He had this, despite how nervous and afraid we may become when faced with hard things to go through.  I just want to feel like I'll be able to handle things, no matter what comes.  And He hasn't let me down in feeling as though I'm not doing this alone.  

Next Tuesday, I will see Dr. Panwalkar, and then begin the new chemotherapy regimen.  I'm so nervous to begin 3 brand new drugs with a host of new side effects that may or may not show up for me.  I will also hopefully get results from the biopsy and be able to move forward with those.  

In the meantime I've been touched by the outpouring of messages, and prayers and visits by so many. Each little bit helps see me through and I will be eternally grateful to all of you who continue to walk side by side with me through this journey.  

What do answered prayers look like in your life?