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. 

Thursday, August 24, 2017

snapshot of my days

I felt like I was in trouble, physically, from the moment I awoke Tuesday morning.  That sense can loom over us before we completely understand it-  is it fear?  Uncertainty?  Just what are we feeling? Why?

I rolled out of bed convinced I'd muster the strength to get through the day.  I had labs, then a visit with Dr. P, then off to infusion, and an afternoon visit with our Fourward group.  Whew.  That is a full day.

But everything was wonky from the start.  I simply couldn't breathe.  A step here, and maybe another and I had to sit or everything felt like it was slipping away from me.  I was so short of breath, and lightheaded at the same time.  Bathing, dressing and getting ready were a tall order.

So we were running late- I simply had no control over what my body could do.  I apologized from the start of arriving at Roger Maris, and the wheelchair was not even questioned but rolled out to me instantly.  

Roger Maris was very accommodating and forgiving of me running behind.  I was soon taken back for labs and then taken to Dr. Panwalkar.  But the lab was behind too.  So when Dr. P walked in the exam room door, he got right down to business.

"A wheelchair?  Why a chair?   Oh what is going on with you?"  he loudly proclaimed.

He sat and faced me right away.

So I told him.  How late I had been, and how physically I wasn't feeling well.  My breathing, my ability to walk and stand and do anything, truly diminished.  I hadn't left the house in 3 weeks.  

Where were those labs?  It had been enough time, but they still weren't back.

Dr. P performed his thorough exam of me like always.  Surprisingly my lungs sounded clear and good.  I really didn't show many symptoms that explained how I was feeling.  The photo of me above, shows how well I can look, even when things on the inside don't match the outside.

What would tell us the most, were my lab results.   The labs just hadn't come through.  Dr P needed to move on with his day.  

So Rick maneuvered me out the door and I heard Dr. Panwalkar say, "Oh, I can get her."  The next thing I knew, I looked behind and sure enough, Dr. Panwalkar was pushing my wheelchair!  In case my adoration of him wasn't as high as it could possibly be, he shows another level of compassion for me.  You could say,  the picture of me in the wheelchair to him, didn't match my words either, but he went with his heart and treated me like I said I needed.  He even took the time to move chairs and steer me perfectly into a waiting room spot to sit and wait.  My heart was bursting for all the right reasons.

Soon, my infusion nurse, Casey, took right over with the deep level of care and concern as we continued to wait for the labs.  It was my doctor's nurse, Angela, that brought the final word to me.

The labs were back and my hemoglobin had fallen to a 5.8!  That is low- extremely low.  And it completely validated why I felt so lousy! She relayed to me how Dr. Panwalkar looked relieved too.  The way I felt and everything I had said matched the results in the blood work.     I needed fresh blood- ASAP.  They could get me in upstairs, in two hours.  I needed to come back in a week to do labs all over again, and see if then I could do chemo.  Angela completely understood the range of emotions we were all going through, and went out of her way to help me maneuver it all too.  I don't feel like I can ever thank her enough for all she does for me.  

Then Angela saved the best for last- a kernel of the best news possible was buried in the mix of some not so great news.  My tumor marker?  Had dropped- from 52, all the way down to 40!  The chemo is working! We just need to get my body up to a quality that it can take another dose of the chemo.  

The rest of my afternoon, was spent lying in a bed up on the old family birth center floor.  I watched tv, rested, and relaxed as the drops of blood started to restore me.  Its a feeling of the light coming back on, after the darkness has swallowed you up for far too long.  I could breathe.  I could walk about. Everything became so easy peasy again- as it should be.  Even when Nolan came to take me home from the hospital, he pushed the wheelchair ever so gently, guiding me down to the car.  But I felt like I could have walked on my own.  

A wonderful dinner awaited me at home.  I did happen to gain 3 pounds and it was all due to the wonderful meals and treats we've received.  I've enjoyed the food so much and it truly made a difference in my life!  Thank you to all who have done so many things to encourage and uplift my whole family so much.

I still have a lot of recovery to achieve.  My counts need to all go higher before I will be able to do chemo and get all knocked back down again.  Most of my time is still spent sitting, or lying down, between my chair and my bed.  So I'm doing all I can to just stay in today and make this day count.

One of the things I've managed to make progress on, with the help of a wonderful friend, is turning this blog, into a book!  Without her guidance, her talents, and the her gift of time, this project may never have taken flight.  She's managed to wield a kitchen chair, wedged between my bed and a recliner for me, and the weight of many posts from my blog- woven together with her deft hands.  She's seen me at my lowest, and always helped me to give my best despite everything.  

We're not quite finished, but we see the completed project on the horizon.  

Love to you all! 

Friday, August 11, 2017

life in my days

I arrived at Roger Maris, on Tuesday, the first day of August.  It was one of the valet parking men who opened my door, and for the first time in 6 years after greeting me, wondered if perhaps I might like a wheelchair?  I smiled and affirmed that yes, a wheelchair was the safest route for my little chicken legs to go. 

It was a day filled with so many new experiences, amidst so many well known activities I could do in my sleep.  Like stepping on the scale before I'm taken back to the exam room.  But this time?  I see a number I hope not to visit anytime soon.  108.  Oh my.  It shows, as much as I feel the frailty.

My blood is drawn and then the wait begins.  My tailbone is sore after a few minutes of sitting and I add this to my list of little concerns to address.  Yet mostly, I wait to hear what the nurse practitioner I'll see, will address with me.

I'm wheeled back into the exam room as my phone starts to ding, alerting me to test results coming back on my labs.  I decide to just wait and let Carrie the NP, tell me.

Moments later Carrie steps into the exam room and offers a warm hello. She sits down and turns to face me, seeking my eyes, and talking directly to me.  She simply wants me to know I'm in charge of how this will go.  That she wants to listen to me, and let me dictate how I want things. 

Its a new conversation and yet, it truly allows me to follow my heart.  I simply tell her these are new unchartered waters for me.  They leave me wanting her and my medical providers, like Dr. Panwalkar, to lead me with their experience.  I know the decisions are mine to make, but I welcome their wisdom, their perspective, and skill in navigating this new course we're on. 

So she smiles and we move right into my lab results. I'm a bit flummoxed by my results.  In the extra week I was given to recover- most of my counts had risen into the normal range!  I could do chemo!  What? I'm instantly struck by the power of prayer.  Nothing else can adequately explain how high some of those numbers grew! Just hearing that tiny bit of news was enough for me to say yes, I would do another round of chemo. Relief flooded through me. While I still have some lower counts, that leave me a little lightheaded and dizzy when I move at times, Carrie felt with time some of those counts may still climb as well.  The rest of the exam went by quickly.  

The chemo dose was reduced a slight amount, but the second infusion of Carboplatin and Herceptin went well.  With steroids in my system, the yucky side effects didn't show up for a few days.  But I also had just the right meds to help me combat them.  

So how am I doing?  Overall, I think I'm slowly starting to recover.  I have had a few days with pain that was hard to manage, but through the Grace of God I somehow made it through.  I can readily admit I have cried, and surrendered, and shouted when I need to.  And I'll see Dr. Panwalkar on the 22nd and will ask for his advice on what I can take to help get me through days like that. But after a few rough times, steadily the days have gone better.

I started reading more.  I'm hungry for some good reading suggestions.  I've also started eating more.  Thanks to all who have so generously cooked and served a meal to us, we're so grateful.  I always feel the love sprinkled in with all the comfort and nourishment the food provides. It truly makes a difference in our lives and I am always seeking my own ways to pay it forward in some small way.  

As hard as this has been on the boys, our bond just strengthens with time.  They check in with me often, and help with everything from getting me meds to laying in bed watching tv with me.  

My phone bings and bleeps with texts and emails- so many wonderful friends just checking in with me.  And so many others sharing encouraging words with Rick to bring home to me-my blessings overflow.  

And I've opened the door to my home, and my bedroom, where friends have come and chatted the hours away.  We just set something up in advance and they text before they come over.  It uplifts me so to have these face to face interactions, with so many going out of their way to offer support to us.

Love to you all!  

Tuesday, August 1, 2017

A small update

I hardly know where to begin.  I've tried so many times to get an update out to my dear readers, but I haven't found the best way in order to do so. 

In a nutshell, here is what has happened. 

I've been in and out of the hospital- 11 days total. 

 We simply couldn't find a method to use to update my blog in the hospital.  I also couldn't manage with my phone.  I had to rely on Facebook, knowing so many readers aren't necessarily connected to me in that way.  

I've been home now for almost a week.  Some strength returning, from a bout with a complicated infection which had me knocked down pretty good.

I even got to spend my 50th birthday in the very hospital I was born.  I don't recommend my venue, although the company I had was great.  My brother, Lee, flew in with my niece, Alex, to surprise me. But boy did I surprise him/them.  I had been admitted just hours after he left Pennsylvania.  The look of shock on both our faces as he walked into my room at the hospital was possibly priceless.  I can say, the best gift, was time spent face to face, one on one, just talking with Lee, and truly all of my guests.  Alex, my niece, was also a trooper and sheer delight to spend time with.  

The other guests we had were Rick's brother, Matt, his wife Julie, and their 3 kids.  My boys were in cousin heaven!  I was so grateful for the time they had together, despite the fact I could not see the younger kids. 

At some point in my first hospitalization, we figured out the infection I had, was most likely coming from my kidney stent.  The same day, I was taken into surgery by Dr. Williams who had placed my first stent.  The very next day after surgery my counts rose enough for me to go home.

Even though, less than 24 hours later, I had another bout with chills, then fever.  I was readmitted that Friday night.

 So many blessed events had already occurred- and they just seemed to continue.  Friday night as I sat at the clinic, I was given a direct admission from the Oncologist on call so that I could bypass the ER.    Dr. Panwalkar had already prepared him for the fact I may be calling him.  Plus, I also found out, the next day, Dr. P was on-call and I would see him both Saturday and Sunday.

It truly seems that, for all those who prayed for me, every prayer felt like it was heard and answered.  My care was first rate while I was at Sanford.  From garnering a private room, to Dr. Panwalkar coming each and every day to see me, I felt watched over.  I had a wonderful view of downtown Fargo, with an entire wall of windows to see out.  I could see two beautiful churches and even hear the bells ring in one of them.  I watched many sunrises, and sunsets.  I could go on and on.

No it wasn't all easy.  It was truly hard and difficult.  I surrendered to so many new things, over and over again.  

But here I am.  Still praying that whatever His purpose for my life might be, that somehow I fulfill that.  

I will be having blood work again today.  Then I will see a nurse practitioner, and we will decide if my counts are high enough to do a lower dose of the chemo I had July 5th.  I'm in a bit of a pickle.  The last thing I want to do is feel sick again, as I slowly start to feel better.  But with the new growth in cancer that showed up, I truly need that chemo to help me fend off that cancer.  

I simply don't know what is in store for me.  Neither does Dr. P, or any of the medical community.  My focus is narrowed to staying within each day and making the most I can out of that.  

The question I hear most often?  What can I do for you?  I'm so touched... it's simply this:

Will you all keep holding me up in prayer?  A few things on my heart: 

I'm a little lightheaded and my legs feel as though they can go right out from under me- I don't want to fall.  

My blood counts, both my platelets and my hemoglobin as well as my white blood cells are low and could use a boost. 

My boys and their precious hearts and minds are often burdened and sad- they just need to know in their hearts they will get through this no matter what.

Superman has been my superhero- and he also simply needs to know he has continuously met all of my needs and I'm in awe of his commitment and compassion.  Its ok for him to let others help, too.

I'm deeply indebted to you all!  Will do my best to get an update out at some point.  

~all shall be well~

Tuesday, June 20, 2017

The storm

At a time when I couldn't possibly articulate what the past few weeks have been like- I stumbled across this video and feel it delivers, powerfully, what living with stage iv cancer feels like.  It's two minutes of a poem, read by a man, with images that marry the words well.

Type, delete.  Try again.  These words?  No.  Definitely not.  Try again.  And again... and...

So many times the past few weeks I've sat here trying to figure out something to say.  To me, there is no clear answer to how I am doing.  I have figured out in a way, how to look ok when I'm in public, or with friends, visitors, etc., for short durations of time.  I can muster something, from somewhere, that has a semblance of "oh, she is doing just fine."

But am I?  I don't know.

I saw Dr. Panwalkar about two weeks ago.  He noticed the sound of more fluid in my lungs, but not to the point of needing to drain them yet.  He also said my blood counts had really bottomed out, so he was going to try something I haven't done in 6 years- ever.  He wanted me to have a Neulasta shot, a week after chemo.  I was told the scale they use for the bone pain you may feel from the shot, goes from "general aches in the bones"- all the way up to "bone-crushing pain."  Oh my!

But, Neulasta has the power to regenerate those healthy blood cells that you need to restore your immune system and keep your counts high enough to do the next chemo treatment.

So last week, I dragged myself into the clinic for my shot.  I could feel my counts were low already, after that first week of treatment.  Plus, we increased my dose of Doxil.  So I was chronically battling taking a deep breath.  That dry, hacking, cough I had years ago when my lung tumors were growing, is back in full force.  My heart races- despite the Metoprolol I take for it.  Thankfully, the shot slipped into the muscle in the back of my arm, and truly was a breeze.  A bit of aching, and some tenderness in the small of my back, but really, not too bad overall.

And I'm learning to just live with the constant ache in my side.  Morphine takes the edge off enough, and we'll bump it up if need be- but then my already foggy head, may not really work much at all.  For now?  I'll just be ok with where I am.  Um, mostly ok.

Because some days?  I truly wonder how I'll manage whatever lies ahead.  I have those days where I can just "go" and "do" and "be."   Yet, other days?  On Father's Day, just hours after getting out of bed- I went back.  I was nauseous and hungry.  I couldn't breathe, but boy could I cough.  I was tired, but couldn't sleep.  I was miserable.  And I was mentally just done.  I sent the men off for a Father's day lunch at the lake and some time for fishing.  Surely, I could muster a few hours alone?

Uff da.  I just couldn't, after all.  Between the dog demands,  and trying to find some food, and little everyday things, I was gassed- back to bed, every time.  Shortly after they returned home, and I requested some food- when I couldn't even form the words to tell them what I could eat?  I burst into tears... and then sobbed.  And sobbed.  It had been a very long time.  And Superman, held me again, and let me- let go.

I had earnestly prayed on and off all day.  I simply needed Him to know, I'd go if he asked.  Was this what He has been leading me too?   But I'd stay and live out His way for me- I just needed a little something.  Anything- to help me through.  I was deeply surrendered.

 We were all spent that night, and tumbled into bed early.  My sleep meds kicked in and I slept well.

It was the early morning sun bursting through my window that awakened me yesterday.  I moved over into the recliner in our bedroom, and was struck by how my breath stayed with me.  I took my meds, and moments later, also noticed my heart slowing down for the first time in a long time.

And then that smell tickled my nose.  Freshly.  Brewed.  Coffee.  It smelled wonderful for the first time in a long time!  Thank you, God!   I sipped and sipped, most of it, and enjoyed it. The light, that seemed to be flickering off in the distance, was starting to steady itself.

"This"- whatever you call it- "this" is exactly what I've yearned for- longed for.  Just a little bit of me, returning to me.

This Thursday I will have a Pet scan at 3 pm at Roger Maris.  Next Monday,  I will have a Brain MRI at 2pm.

How can I pray for you?  I will bring lists with me to the clinic in the hours of wait time, and sedation time I will have.  Focusing on YOU, truly helps me.

My gratitude continues to fill and spill, when the distant hum of life beats at my front door.

My love and blessings to you all.

Thank you for even just showing up here!

When you get lucky

When you get lucky

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