Best Day Ever!

I went to Huntsman today for some acupuncture with Annie.  She's amazing, I came away relaxed and feeling great!  But the potentially life changing information she gave me today is this.  She said that when there's a sudden change in activity level, it can cause a condition called Radiculopathy.  At first I thought she was kidding, like nerve pain is ridiculous.  But there is a real condition!  When I started chemo last October, I stopped going to the gym and haven't been back.  Here's what wikipedia says about it.

Radiculopathy, also commonly referred to as pinched nerve, refers to a set of conditions in which one or more nerves are affected and do not work properly (a neuropathy). This can result in pain (radicular pain), weakness, numbness, or difficulty controlling specific muscles.^[1]

In a radiculopathy, the problem occurs at or near the root of the nerve, shortly after its exit from the spinal cord. However, the pain or other symptoms often radiate to the part of the body served by that nerve. For example, a nerve root impingement in the neck can produce pain and weakness in the forearm. Likewise, an impingement in the lower back or lumbar-sacral spine can be manifested with symptoms in the foot.

This makes perfect sense now, because the itching and pain in my neck and arms could be caused by this.  She explained neuropathy is in the extremities (feet, hands), and this is nerve pain closer to the source of the problem.  So if the cervical spine is out of whack, it can cause symptoms in the neck and down the arms.  If your spine down lower is out of whack, it can cause problems down your legs.  

She gave me a card for an musculoskeletal doctor to determine if this is, in fact, the source of my pain and itching.  And she gave me information about a program they do at Huntsman called POWER (Personal Optimism and Exercise Recovery).  You know when you need something and it just drops in your lap?  The story of my life.

The other GREAT news I got today is that this years entire out of pocket maximum ($5000) was paid with a pharmaceutical co-pay program.  Our insurance year runs from Sept. 1 to August 31.  So, my first procedure this year was an infusion of Herceptin on Sept. 7th.  We got the bill from Huntsman for $4,970.  Because the whole out of pocket max was the Herceptin and no other procedures, this co-pay program covered it all.  If the first procedure of the year had been a CT scan, or the hormone shots, or anything else, we'd have to pay toward the out of pocket max.  So, once again, things fell into place exactly like they needed to for our blessing and financial reprieve.  I'm so SO GRATEFUL for my friend Kolleen who gave me information last year about the assistance programs at Huntsman and for Amber who walked me through applying for the co-pay assistance. 

DON'T TELL BROOKLYN!  Its a surprise!

The third great thing today is that Brooklyn's baby book came.  She has no idea and is getting it for Christmas!  She's felt bad for several years because she sees Maddie and Isaac's baby books and she doesn't have one.  Theirs were "scrapped" in those big 12x12 Creative Memories books.  I've got no time for that anymore!  So it's a digital book, but so cute.  She's going to LOVE it!

My week

Isaac's 18th birthday is today.  I've been doing digital scrapbooks for the younger girls and it's been so great to see so many pictures of him when he was younger and hilarious, he kept us laughing constantly!  I could post dozens of pictures just like this one.  Goofy faces, funny outfits, broad smiles!  We love him a lot, even when he's 18!  💖

Sometimes I get a little "bah-humbugish" about the choirs Christmas concerts.  It's so hard to get tickets, the traffic and parking, throngs of people, most years I can talk myself right out of going.  My cousin Jennifer works for KUTV and was able to snag 2 tickets to last nights concert with Kristen Chenowith.  Thankfully, she picked me as her lucky companion!!!  I'm telling you, it was a WINNER!     She's funny, so charming, and her message of love and Christ being the most important of Christmas was so clear and so touching.  She was raised in Oklahoma and has the best accent.  My Brooklyn and her friend Abby came with us, because Brooklyn has been obsessed with the choir lately.  Mat has taken her 3-4 times to the broadcast in the last couple of months despite our 9:00 church time because she asks so nicely and he cracks.  😂  Her choir teacher at SDJH is in it ... and she LOVES her choir teacher, Mrs. Larson!  They watched the concert from the Little Theater in the Conference Center and loved it as much as we did.

I had my monthly support group on Wednesday and came away feeling a little somber.  One of our dear sisters, Cindy, is very sick.  There is nothing more they can do for her.  Her initial diagnosis was stage 4, it was all through her bones.  By this summer, it had spread to her brain.  She's done surgeries, radiation to her brain, spent weeks in the hospital this year.  Her goal is to make it to Christmas for her kids, which I believe she can do!  Probably won't make it much past that.  It was a very emotional group as we processed what she's been through in the last 6 months or so, and what is coming.

I had my monthly support group on Wednesday and came away feeling a little somber.  One of our dear sisters, Cindy, is very sick.  There is nothing more they can do for her.  Her initial diagnosis was stage 4, it was all through her bones.  By this summer, it had spread to her brain.  She's done surgeries, radiation to her brain, spent weeks in the hospital this year.  Her goal is to make it to Christmas for her kids, which I believe she can do!  Probably won't make it much past that.  It was a very emotional group as we processed what she's been through in the last 6 months or so, and what is coming.

The last couple weeks the neuropathy in my feet is worse, starting to get painful to walk.  And despite my ramped up antihistamines the itching is still a bugger.  I was up most of the night last night trying to get comfortable but it was worse than it usually is.  I couldn't get up for church today even though I intended to get there for at least part of it.  Just after 12 o'clock my friend Regena came marching into my room to bring me something, then we talked for 2 hours!  I love it when that happens!  I'm reaching desperation mode with itching and neuropathy.  I'm meeting with a psychiatrist on Thursday, "not because you're crazy, Kim" my social worker Annie said, but so someone can know what I'm taking and how much and know what's happening and see if there's something more that can help me.  I contacted my study coordinator last week to see if the CBD oil is OK, still waiting to hear on that.  I am also doing acupuncture again tomorrow as well as my monthly massage on Tuesday. 

It seems like I do a lot, but when I look back at my days, I don't really.  In some ways I'm grateful for that, to be able to take life at the slower speed it is now.  But I'm a doer, I thrive on checking things off my list everyday.  Not having the energy to cross much off is frustrating.  Mat's niece texted me this week about Christmas and asked me if she could help us with anything.  She came yesterday with a friend and finished painting the interior doors.  I've meant to get to it, I had another friend help me get to the point we were until yesterday.  But the thought of taking out the paint stuff, prepping the last door, pouring, rolling ...  too much for me.  It's pathetic.  I want to stay active and feel productive, but most days I don't have the gas in the tank to do much.  The pain in my feet doesn't help that either.

"MERRY CHRISTMAS!!!"

I had an interesting experience today.  Me and Maddie were going to Old Navy to return something, the one at Station Park.  You know what it's like to to park in there this time of year?  A nightmare, especially to get close to where you want to go. So we're circling around and around and I look down towards Old Navy (You know where the parking stalls are on a 45 degree angle?  And the reasonable way to get into those spots is going the direction of the 45 degree angle).  I saw a car backing out of one of those spots, at the exact moment a women coming from the other direction saw the same car backing out of that spot.  We both have our blinkers on for the spot, but because I was going the "right" direction, and she was going the "wrong" direction, I slipped in as soon as the parked car was out of my way.  After all, in my head, I'm saying "she would have to make a 6 point turn to get in there, therefore, I'm taking it."

What happened next was nothing short of crazy.  If I had known, I'd have let her have the dang spot!  As I sent Maddie in to return one item, she sat behind me in her SUV yelling at the top of her lungs with her window down, left arm and head outside her car.  She blasted her horn at me, over and over again, like she wanted me to vacate the spot immediately.  And she stayed there yelling and honking at me for about 5 minutes.  Now, I have a streak of stubborn in me, if you'll be nice to me I'll do anything for you.  But if you're rude to me, I'll dig my heals into the ground and not budge an inch.  Maddie said that customers in the store were looking outside to see what all the fuss was about.  I completely ignored her, didn't react at all.  I even had a contingency plan if she approached my car.  "What?  What??  I can't hear you.  Sorry!"

She finally sped off just before Maddie came back.  Silly woman.  She could have had my spot!  As she drove off, I yelled as loud as I could, "MERRY CHRISTMAS!!!" in her direction. I think she missed the memo.

Last night, my friend Regena came over to massage my hands and feet.  It was amazing!  In 2009 we started our cancer journeys together.  Same ward, same diagnosis, same treatments, same side, bald together on the back row in Relief Society.  She's been a great friend over the years, she's one that will do whatever she can to help me!  She's come to chemo with me many times.  She'll fluff the pillows, straighten the blanket, make sure my water and purse are within reach, then she lets me sleep if I want to, she'll buy me food if I need it.  She's one great amiga and I'm grateful our paths crossed when they did!  Two baldies!

 

Neuropathy Challenged

I'm getting my first real taste of neuropathy this week.  I've known for a few weeks that my fingers and toes were showing signs.  It finally occurred to me that dropping things constantly and tripping or missing stairs could very well be the beginning (because they are numb).  The last little while I've felt a sensation down my legs - kind of a painful itch.  That has made its way to my feet now.  When I put my running shoes on (not because I'm running!), it feels like the laces are clamped down really tight on my feet.  So, I'll stop and retie them really loose, but it doesn't make a difference.  Just having my feet in a confined space is enough.  I can be grateful that I haven't had problems until now, right?  Always a silver lining.  I know it very well could get worse.  When and if, I'll work hard to get through it with a smile.  It's been relatively "easy" to get through the last 10 months or so, it's a little distressing to see things change.

Recently, I've had 2 friends tell me about either hemp oil or CBD oil for neuropathy.  CBD is legal in Utah, even before all this Prop 2 stuff.  You can get it from chiropractors or health food stores, it's actually widely available.  The quality is widely variable too.  I talked to a few friends (including my bishop) at the beginning of stage 4 and got a wide range of opinions.  People who have tried it for various conditions swear by it.  It comes in various forms, liquid dropper to put under your tongue, in creams, capsules, even breath mints. I'm going to do acupuncture regularly, and try some other things, but this is something to consider.  And just for the record, I would never buy anything with THC in it (the compound that makes you high).  I know this paragraph will bring up a wide range of opinions on the subject!

One of the prescriptions that is commonly prescribed for neuropathy is Gabapentin.  I took a very small, daily dose a few months ago when all this itching stuff was getting bad.  The problem is it created a whole new set of issues for me: clumsiness, blurred vision, fatigue, mouth lesions, etc. etc.  I have to consider all sides of this issue, benefits and side effects, how either will impact my ability to function day to day.  It's a tough line to walk, I wouldn't wish it on anyone.

I've been going through file folders of pictures I've kept since high school.  I can't believe it's taken me 30 years to let go of some of this stuff!  It's been fun/weird to see all the pictures of the first guy I really fell in love with, and the next one - who I dumped when I was 19 because I knew without a doubt I shouldn't marry him.  We had been engaged for about 8 weeks when I did that.  He was devastated but I never regretted it for a second.  Look at what I got because I waited!

I threw away pictures from the MTC.  I went through all the pictures I took the two summers I worked at Lagoon.  All gone.  I threw away dozens of pictures of friends at school dances.  You know how we used to exchange those?  Gone.  High school and graduation?  Gone.  You know what's most important now?  My family, none of that other stuff matters.

I never took the time to go through it until now.  I'm creating digital memory books for my family.  I have 10 years of scrapbooks that are the pre-digital era, and that was when I was deep into those heavy 12 x 12 Creative Memories books.  I figure I have close to 20 of them (17 after yesterday!)
Can you imagine lugging those through 7 moves over almost 25 years?  Yesterday I took three books to the Family History Library in Layton.  They have a flatbed scanner big enough to scan those pages.  I tore off those page protectors with no regard to how much money I've spent "creating memories" over the years.  I scanned the pages I want pictures from, and threw the rest away.  Eventually, all those books will be in the trash because everything I really need will be digital.  I have plenty to do to keep me busy for quite some time.  Lots more fun to come!

Reality Hits

When Mat came home tonight, he was so exhausted that all he could do was watch TV.  All I could do was about the same!  It stresses me out when he is so stressed out.  Christmas season burnout is upon us.  Mat has already had several concerts, Thursday he has 6!  More Friday and Saturday.  Why does he have to be so darn good at what he does??  Everybody wants his choirs to perform - ward christmas parties, nursing homes, etc. etc.  He can send the Madrigals off by themselves, but not the others.  He won't really be present at home until Christmas Eve.  See you in 20 days Mat!


This is our Christmas tree this year, the Winter Tree - blue-ish, white, twig balls and a splash of red.  I like it, I love the little owls I found at Taipan Imports for this tree!  I have driftwood stars that I bought in Plymouth Mass.  I wish I would have bought 10 more of those!  Guess I'll have to go back!

We went to Temple Square to see the lights this weekend.  Turns out, I can get pretty decent night pictures on my iPhone.  I'm kind of surprised!  One of the big pictures I have on our family picture wall in the dining room is a daytime shot of the Salt Lake Temple.  I printed it off 16x20, looks right decent!  You'll have to come see it!

This afternoon Kurt Bestor did a free concert at Huntsman, for patients, family and staff.  He is a really great performer, I need to get some of his music downloaded.  I love the John Schmidts, Kurt Bestors, Paul Cardalls of the world.  Peaceful piano/orchestration is what I listen to most of the time.  My absolute favorite song he does is Prayer for the Children.  I love that Huntsman provides these opportunities to patients and families.  It's part of the "total package" of healing, I think.

I realized after I applied and got approved for Social Security Disability (stage 4 cancer qualifies as a permanent disability) that our minor kids actually get a monetary monthly benefit as well.  I spent an hour on hold yesterday, and after finally getting through to a real person she asked for their social security numbers.  Of course those documents are somewhere in the chaos downstairs.  I managed to stall long enough to find their SS cards and give her the numbers.  They'll call me back for a phone appointment on January 26th to get it set up.  January 26th??  Not quite as efficient as when I applied online late one night, got a phone call the next day, and had my first check in less than 3 weeks.  But I'm grateful for these benefits! It means college savings for both of them.

Acupuncture and Other Fun Stuff

McK wasn't feeling great and ended up on the floor
in front of the Christmas tree, sleeping soundly! I
had to call her name several times before she stirred
and then she still didn't get up!

Today we celebrated Mat's 50th birthday.  We had an informal gathering with a few friends and family and had one of Mat's favorites - pumpkin pie!  It was fun!  I managed to keep it a secret, but by this morning he was suspicious, he knew there was something going on.  😉  I actually blocked him on FB last week, just in case he would see something that someone said about it. He's been "unblocked" now and we are friends again.  I didn't think to take a single picture - typical.  It's fun to have people come see the house, especially when they saw it in it's original condition.  It's a totally different place!  I'm grateful things worked out just like they did, I'm grateful to have a "home" again.

I had chemo this morning (Friday).  I was so delighted when the nurse told me I got a bed!  I haven't had a bed for a long time.  The beds are in private rooms just off of the infusion room.  They are so comfortable, they have chambers in the mattress that slowly fill and deflate with air.  Dreamy!  It's a great way to do it if you have to do it.  Maddie came with me today, she didn't have to work until 3:00.  After we got home, we both crashed for a couple hours.

One of the blessed side effects of my chemo is peeling skin and nails that crack, peel and break.  I used to admire my Mom's nails when I was little.  She'd have them long, perfectly rounded, filed and painted all the time.  I've never liked long nails because I spend too much time outside and I can't stand having dirt under them!  But now I have to trim them before they even have a chance too grow out.  No matter how short they are, they'll crack and snag stuff.  I'm going to have to start to wear bandaids on fingers that have broken nails because I can't clip them any shorter.

Itching is still my constant companion, arms, neck, and now down my legs as well.  I'm not sure when the time will come to raise the white flag.  The chemo I'm on now is keeping the tumors from growing, but at what cost?  It affects my life everyday and has seriously thrown off my sleep.  It's hard to go to sleep and it's harder to get up at a decent hour.  I take zyrtec and a prescription antihistamine, more than the recommended doses (and with the blessing of my doctor), everyday to try to stay on top of it.

One thing I've had to come to grips with is this IS my new normal.  Broken, peeling nails, itching, fatigue, mouth sores ...  I'm getting used to the idea, and I'm very grateful things aren't worse!

I went to an acupuncturist, Annie, this week, and I have to say, I'm a fan!  Acupuncture is one of the "perks and benefits" of being a patient at Huntsman.  Annie is as good a therapist as she is an acupuncturist.  I don't get how it works, but those needles were magic! I had needles on top of my head, in my ears, hands and wrists, ankles and feet.  I left there feeling relaxed and rejuvenated.

I have been thinking a lot about what to do for Isaac.  I know there are a lot of people worried about him and praying for him, which is so great!  We've felt those prayers too.  I took him to his therapist again this week, I was really impressed with her the first time we met with her.  Of course, I don't get to be a part of the sessions, so I don't know what they're talking about but he seems a tad bit more calm.  Maybe it's an illusion?  Wishful thinking??  I've looked into different options as far as treatment programs/therapy etc.  A few months ago, I would have sent him to Timbuktu for 5 years of residential treatment.  But as it always seems to happen, a good friend of mine has a connection to someone that knows a great deal about long-term residential vs. intensive outpatient treatments/therapy.  Evidently, there is a much higher success rate with the intensive outpatient than sending your kid to Timbuktu.  Go figure!  So for now, we stay on the course we are on.  He turns 18 in 2 weeks, so he'll be in the proverbial drivers seat after that.  And he's keenly aware of that fact.  We're praying ...