Monday, January 1, 2018

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!

Thursday, December 7, 2017

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.  

Monday, November 6, 2017

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?  

Tuesday, October 31, 2017

the changing seasons

I was recently so honored to be asked to share my cancer story on my friend, Jenna's blog, that she named Grape Tootsie Pop in honor of her mom, Carol.  Carol was part of our Fourward survivor group and we miss her so!  Please feel free to pop on over and read if you'd like to hear how this whole cancer journey began for me...  Vicky's story.  

I've been turning thoughts over and over in my head, wondering how to share with you all.  Its only just past a week since Dr. Panwalkar squeezed me in after he'd been away on vacation, but it feels like a lifetime ago with all the new territory we've covered already.

Dr. Panwalkar strode into the room and was headed straight for his chair when I instantly asked him about his trip.  He smiled big and said it was wonderful- far too short- but good.  But then he switched back to me right away and asked about the boys, as he loaded my scan results on the computer.  I could tell he was all business this day.

He started his report with a summary- "Well the results are not terrible... but they're not good either." He proceeded to show my lungs with a new spot in my right lung now and growing spots in the left,  my ribs on the left with a spot now showing after months of pain indicated something was already there, and my pelvis area, including a growing mass in my uterus.  Click after click with areas lighting up left and right. I find myself drifting off a bit as he measures, and plots, and tries to determine just how much more activity and growth the cancer is showing.  To me?  Its all too much!  What are we going to do?  

I'm trying to just breathe deep and stay focused.  He turns and faces me and says, "I think its time we get a new biopsy and see if the cancer is the same, or has changed in some ways.  It will also match us with any treatments that may be left to try.  I think its best to try to get a sample from your uterus."

"In the meantime, I think we'll try switching to a different chemo... maybe Ibrance, a hormone treatment.  As he talks about my history, he is quiet and reflective.  He is turning things over in his mind too.  I can see how tricky this all is- it certainly matches how I feel.  He finally asks if we've tried any in the 5FU line?  I shake my head no.  We haven't.  As we talk about it, I realize a weight is slowly lifting from me.  He is talking about treatment.  His voice now has some conviction again and then suddenly, he brightens and says- well since you haven't had any from this family than there are two more drugs we can use with it as well. He shares that 5FU is an old breast cancer drug, now used more for colon cancer, but there may still be some benefit from it and I may keep my hair.  He also mentions Methotrexate and Cytoxan that go along with it.  He is proposing a 3 drug combo. 

He goes on about a couple of other drugs and its then I jump in to ask him... "So are you saying theres more treatment options left for me to try?"  We go through many of the ones I've done already, but off the top of his head he still finds another one.  He cautiously says we just need to keep in mind my body isn't recovering very well, or rebounding very quickly from each session of chemo I do.  The trick is to find a therapeutic level of a drug that I can tolerate, and yet still have it do some good.  I find myself shaky all over again.  This isn't going to be easy.  

But then he switches gears again.  What do I think about trying to find a study?  There are so many mechanisms being studied and he rattles off the ones he is most impressed with.  He is downright animated in talking about the proteins, and the types of cells, and the nuances of all the components.  My head is swimming.  A lot of the studies are on the East coast.  They would require a move, and possible hospitalization.  It'd be costly, in many ways.  I'd have a lengthy process to go through just to see if I qualify.  But the idea has merit?  So many ideas with possibilities, but which ones are the ones we should embrace?  For now we will test for the proteins and just start with that to see if I'd even qualify.  

I'm so fraught with emotion by this time, I just need time to process all of this.  So I tell him what is foremost on my mind for right now.  The boys are starting their hockey season.  Its a big part of our lives.  I simply need to feel as though I can do ok, whether I am able to fully be with them or not, can I get by long enough to see them through their hockey season sometime this spring?

He pauses and mulls it over.  He smiles, cautiously, then says, yes, I think we can try for that.  

We get up to go, but I won't be having infusion for 3 more weeks.  Instead of walking me out, this time,  he goes right, and I go left.  So much new, amidst so much old, and I can only wonder what it all means. 

I have had many tests these past few days, preparing for the stent surgery sometime on Thursday.  I will see an OB on Wednesday to talk about the biopsy process and make a plan.  I will do my best to come back and fill you in, soon.  In the meantime, will you pray for me?  Out of all the change, the one thing that has always seen me through is your prayers.  I'm honored.  And humbled as always.  

Love to you all~ 

Wednesday, October 18, 2017

Still waiting...

Last week as I was headed out the door to the clinic, I paused just long enough to snap a few photos.  My hydrangea plant was still blooming, right in the midst of fall weather.  In fact we covered the plant hoping to preserve it a bit longer, but alas, the frost crept in that night and the once bright colors were instantly turned brown.  I was so thankful I had stopped and gotten a few images.

As I looked closer, I noticed that the plant was showing every stage- from the green of the newest buds, to the bright pink of a fully blossomed flower.  There was even some rust patches of reds, yellows and browns creeping into the bottom.  Does the plant really know which season it is in? 

The temperatures are low enough at night that we awaken to a layer of glistening frost in the mornings.  Yet by mid-afternoon, the temps turn into a warmth hovering in the mid-seventies.  Different parts of the day have us either pulling on layers for warmth, or quickly shedding them, with thoughts of what was I thinking when I put this on earlier today?  

It's actually a pretty good metaphor for how I feel these days!  

I had my PET scan on Monday.  With Dr. Panwalkar being on vacation, I saw Lori, a nurse practitioner,  for my appointment on Tuesday.  She has helped me often in the infusion center, checking on me when my infusion nurse, or I have had a concern.  

But everything felt out of place for me yesterday.  My appointment had been changed by the infusion center to an afternoon and I couldn't get it changed back to morning this time.  So Rick had to leave half way through my appointment.  But Lori was honest in saying she simply didn't have enough experience in reading PET scans to truly tell me much of anything that day. While some changes in the scan from 3 months ago, are evident in the scan on Monday, just how much change is the biggest question.   Plus, my platelets were too low yesterday  and I wouldn't qualify for any infusion treatment.  

The report by the radiologist had enough questions in it, that nothing was very conclusive and Lori felt it would be best to wait for Dr. Panwalkar to return from his trip next week to see me- hopefully.  He returns to work next Tuesday, and his schedule will likely be daunting.  Yet they said they would try to get me squeezed in.  So much, is simply out of my hands.  I hardly know what to do.

In the meantime we are in the process of getting me set up for a kidney stent replacement again.  Its hard to fathom its been 3 months since the last one and on November 2nd, I'll be having yet another stent replacement day surgery- but this time at the new hospital which I haven't seen as of yet.

So I'm kind of in limbo.  Both physically, and emotionally.  I'm clinging to today and focusing on all that I can do right now,  and trying hard not to focus on what lies ahead, or doesn't.  I simply don't know.  My outside and my inside simply don't match.  

Yet as much as I am in today,  the future calls to me to engage, to plan, to dream.  Plus, having so many of you showing up and sending me such thoughtful responses to my last blog post helps me fill with hope and keep my eyes seeking the future, as uncertain as it is, for all of us really.

A couple of my cousins and their daughters came to visit me last week.  They brought warmth, laughter and a sense of family back to me, which meant so much.  But they also brought the gift of a battery-charged heated coat!  The battery attaches in the back in a small pocket and the buttons shown on the front help you regulate the amount of heat that is generated.  

How cool is that!  Its perfect for the rink and I'm longing to be able to try it!  

Thank you Mary, Jackie, Nichole, and Brook- and the whole Brainerd crew!  

We also have a wonderful neighbor who offered to cook some casseroles for us once a week.  She offered to use my tuna noodle casserole recipe, and Colton is pretty over the moon to know whats coming.  Plus so many who have also brought other meals, and come to visit and have simply helped us feel supported, and valued and loved.  Its those very things that help me yearn for all the tomorrows, knowing that He has this.  He has me.  He has our family in the palm of his hands and he shows us every day that the bottom line is...

"All shall be well."  

Thursday, October 12, 2017

Bubba Jack

I haven't used a term of endearment for the boys in ages.  It seems lately however,  I've been a bit more nostalgic.  Colton was such a big baby from birth- we used to call him "Bubba."  And with his middle name being Jack, somehow the two were put together and Colton was either Bubba, or Bubby, or Bubba Jack. 

To look at him now, you'd be pretty darn surprised at how round and full his cheeks used to be, and how rolls layered upon rolls of fat surrounded him as a baby.  These days he is stick straight up and down- tall and lanky.  His goal is to put on more pounds and keep stretching the inches.  But its a struggle to keep those pounds on.

So he was pretty bummed last week when he realized he has lost a few pounds again.  Why?  He works so hard at eating in a healthy way, but tries to consume large amounts of food on a daily basis.  He was pretty frustrated to see the loss.  But still, I was unprepared for our conversation to come.

He came into my room after weighing himself and sighed heavily.  "Mom, do you remember when we were little and you used to cook for us?"

My heart stopped.  So much meaning, in such a few short words strung together.  How do you even respond?  My mind can't accurately even tell me the last time I've cooked a full meal for our family- but it hasn't been years.  Yet, this is how he feels?  I was so sad to hear him speak his truth.

I decided to tread lightly and talk about what he missed, and see if him and I could devise a plan to satisfy his desire in some way.  I could still cook a full meal,  couldn't I?  

The dinner he misses the most?  Tuna noodle casserole.  I've tweaked the basic recipe over the years to put a layer of browned panko bread crumbs over the top and layers of sharp cheddar cheese.  So we made a simple list, and the only thing we needed was a way to get to the grocery store.  But Rick and Nolan were gone for fall hockey in the cities, and it wasn't an urgent need to call someone to take us. 

But my Bubba Jack was so earnest in wanting to help.  Couldn't he ride his bike to the grocery store?  He thought so carefully about all the details and knew he could get it done.  In fact, what if he and I went together in the car and he drove, and did the shopping so I could rest in the car?  Could he pay for it on his own?  Could he get his own debit card?  He lit up with all the ways he could make it happen with a bare amount of help from me.  

I sit in these moments lately and cannot always keep my composure.  He could feel so cheated of what he doesn't have, in so many ways.  Of wanting something so basic, yet a true challenge of sorts when your mom is fully in the grips of living with cancer every day.  But what he shows me?  Is that he will find a way to thrive, with or without me.  I simply want to know, both my boys will be ok, no matter what lies ahead.  

And Colton rises and meets the challenge.  Not ashamed- or embarrassed at how he'll have to be the parent in some ways.  My heart feels so full.

It got too late that day, to make it all happen on the spot.  But I was on a mission, with a new found desire to simply provide for my family.

Sunday afternoon, with all the ingredients that Rick had gone to the store and gathered for me, I assembled everything into the glass bakeware I had dug out of the cupboards.  Colton had gone golfing with a friend.  The sheer look of joy on his face when he smelled the dinner in the oven as he walked through the door was so fun to witness.  I had been on the way to my room to collapse already.  I lost myself in the preparation of everything, but as I stood after putting the dish in the oven, I knew I was done.  Exhausted.  How can something so small, have such a big impact?  I don't know that I'll ever have an adequate answer to that question, but its become an every day part of our lives.  

I have to pick and choose, where I spend my time and energy.  The basic things can become monumental tasks and consume you for a day.  Friday was a trip to Target.  Saturday I was able to attend one of Nolan's hockey games here in town.  The cold is going to be a huge challenge for me and how it affects my level of pain- so I'm trying to mentally think through how I will maneuver to watch Nolan play this season- but I am determined.  

I've received a booster shot every Tuesday which truly helps me muster a bit more activity and I'm so grateful for that.  This coming Monday, I'll have a PET scan, then see the doctor on Tuesday for results, and then hopefully proceed on to infusion of one kind or another- I truly don't know what lies ahead.  

Again- so much will depend on that one little test next Monday.  So I'd like to prepare the same way I always do.  Can I take a list of your prayers requests with me?  I'll pray, repeatedly,  for whatever may be on your heart!  Please leave requests below in the comments! 

Thank you for showing up here, and reading, and letting me know I'm not doing this alone.  The little things you all do continue to have such a big impact on me- they're not so very little at all anymore.   

Thursday, September 21, 2017

Updates and blessings

The beautiful art piece above was sent to me this summer in a gift that blessed me so.  I put it on a bookshelf next to where I sit in my recliner most days, surrounded by gifts that continue to uplift me so.  Thank you again, Linda! 

I have felt as though I'm wrapped in a blanket of blessings lately.  My prayer for this Tuesday was a simple, "help me be open."  Tuesday, September 19th, already had a mighty tug on my heart.  My Dad, who passed away 8 years ago, would have turned 88 years old that day.  Warm memories of him followed my steps as I prepared to go to Roger Maris for chemo treatment, along with an appointment to see Dr. Panwalkar.  I was truly a bundle of nerves.  

I was so pleased to be able to walk on my own.  I stepped into the building and instantly saw the new lobby open off to my left.  It was now empty of all chairs around the reception area, and I felt like a new patient figuring out how to navigate this new arrangement.  The new waiting area in the lobby is beautifully done, and the windows bring such light into the room.  Its still a work in progress, but I think it will be great when the small details are figured out. 

After my labs were drawn I had an hour to sit and wait until I saw Dr. Panwalkar.  As I stood watching for Rick by the front door,  I saw a familiar face approaching.  Kevin Wallevand, the reporter from WDAY who had so beautifully shared my breast cancer story last March, had just finished another story and was leaving.  It was so fortuitous that I ran into him.  It felt like we picked up the conversation right where we left off last spring.  It was a wonderful encounter and helped flood me with warmth moving into the day ahead.

It wasn't long and Rick and I were taken to exam room 7.  For some reason, as humid and warm as it was the other day, the air conditioning felt unusually cold and my fingernails were turning blue.  A warm blanket was brought to me and I huddled down into the warmth as Dr. Panwalkar strode into the room.  

He dove right into asking me all the basic questions about how I had tolerated treatment last time and how I was feeling. He noticed how cold I was and he chuckled at how it might be an early "long johns" season for me.  He also said my body is so thin and has had so much treatment,  it will likely not be able to regulate temperature very well anymore.  

He then turned and faced the computer.  He hesitated before he showed me my lab results.  My counts were once again low.  Too low for chemo, so another booster shot was in order.  I have been going into infusion weekly for a booster shot to help keep my counts high enough to continue chemo.  But last week my counts were so high I didn't have the shot.  

So we figured out a new schedule of both labs and shots, and hopefully I'll be able to do chemo next week.  My tumor marker remained the same, but at least it didn't rise.  He also indicated it is time for a PET scan and filled out the orders to seek approval from insurance.  

As Dr. P worked on the calendar he mentioned it'll be 4 weeks until he can see me again, as he'll be gone.  He grew somewhat quiet before he shared with me he was taking a trip home, to India with his wife and kids.  I instantly broke into a big smile.  I don't take offense that he will be gone.  I instead want to celebrate his time away from work, and time with family. He was wondering aloud if his kids want to see where he went to school as a child, and then where he went to medical school.  His smile grew so big as he talked about it.    I enthusiastically shook my head yes, and said please take them.  I was so happy to chat a bit about family and memories.  I shared with him about my own Dad's birthday that day.  And then it struck me- I realized how much of Dr. P's compassion and how he steadies me and encourages me so, reminds me of my Dad.  It felt like a full-circle kind of moment for me.  There is a palpable positive energy that encircles our conversations and it's Rick who points this out to me from an observer's point of view.  

I concluded my day with a booster shot.  As I was walking around the corner to leave the infusion center, I ran into one of the volunteers, Sandy.

Sandy is one of my prayer warriors.  She took time off this summer to spend with her family, including a new grand baby.  But oh how I missed her.  It was pure grace we bumped into each other and she'll be working at the clinic on the days I'll be there.  She is a true spiritual mentor for me and I long to catch up with her.

Looking back on that day, I realize the parting words from my infusion nurse were an apology about keeping me waiting.  And on the occasions it happens, I simply shake it off.  It's truly in the waiting that I've found a lot of "life" happening, and that I wouldn't want to miss for anything.  Being "open" on Tuesday, feels like it helped me to fully receive the blessings that were in waiting to unfold before me.  

I haven't taken a lot of photos these past couple of months.   But recently my energy has improved so that I can walk about the house and not feel as though I will get too short of breath, faint, or fall.  In fact, I was even able to dress for a family photo with the Stanley Cup when Matt Cullen brought it home for the day.   I loved that the boys got to see the cup and play with the Cullen kids before the big party with the cup later that night.  It was a memorable day/night for us all, and one of many blessings that has come our way.  The below pic was a quick cell phone shot of two very happy boys.

One last fun thing to share with you all.  The release of the documentary I was so honored to be in,  "Part of Me Now,  Living With Breast Cancer," is October 1st!  It has won so many awards and accolades.  It's premiered in France, Italy, Spain, Canada, and other countries, as well as all across the United States.  It's also going to be available on online platforms such as " iTunes, YouTube Rentals, Vimeo, Amazon Instant, etc., and hopefully Netflix soon.  Emily, the Director, Editor, and Producer of this film has done a wonderful job helping us follow the course that this documentary has taken and allowed those of us in this, or connected to it,  to follow along.

A Facebook page with lots of information can be found here.  

A huge part of any donations and funds this documentary will raise, are being donated by Emily to Sanford's Cancer Survivorship Program.

If you ever want to truly feel what the experience of living with breast cancer is like, this is a very real look, at so many women and a man too, sharing their stories.  

Thank you all for the continued prayers, uplifting messages, delicious meals, and all the ways you find to help us along this journey.  I think we all want to feel like we matter in the end, and as much as you've made me feel like I matter, I pray that you know how much YOU matter as well.  Together, continues to be the best way through living with cancer. 

When you get lucky

When you get lucky

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