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.   

When you get lucky

When you get lucky

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