Tattoos

Today my load was lightened by my dear friend, Cari, who just showed up and asked what she could do.  Our water heater went out Saturday night and didn't get replaced until Monday night, so the kitchen was a disaster!  She came in and whipped things right into shape and it looked great until the kids came home.  😜  She even brought us dinner tonight, so there wasn't a thing to worry about today.

My friend Michelle (some of you know her, she's come to church with me a few times) has been in a rehab setting for almost 4 months as she recovered from a C. Diff. infection.  This weekend we got to move her back into an assisted living facility and she was happy!  I worked with Dave and Jenny (other long time friends) this weekend to get her stuff from the storage unit to her room, and get everything set up and ready for her to move in.  This was the "reveal".

Tonight I went up to take her a few things, and another friend came.  I noticed that she had tattooed eyebrows, so I asked her about it, and got pretty excited!  I just need something on my face!   When I got home, I asked the girls what they would think of that.  They both went into all the reasons why I shouldn't do it, "because your body is a temple, and they'll look bad, and how will I get the color right because I don't know what color my hair is when it comes back in, DAD! don't let her do it!  . . ."  On and on they went about how I just shouldn't do it!  Mat said that if I decided to get tattooed eye brows, he wouldn't care.  And then they started up again. It was SO FUNNY!  I suggested the three of us go talk to the Bishop to see what he says about it.  😂
So be thinking about that Bishop . . .

Being my Mom.

Me and my Mom, on her 80th birthday 

My mom was in her 70's and still feeling guilty and worrying about what she could have done differently about her kids making bad choices, or what she perceived to be bad choices!  I swore I'd never do that, that I would do my best to teach and guide and be a good example.  "Teach correct principles and let them govern themselves."

Motherhood is so complicated!  I'm on guilt overload tonight.  I had it out with one of my children tonight.  This particular child has some ideas and opinions that rub me wrong, and isn't making the best choices.  I guess that's just my perspective, based on the way I always pictured the way things "should" be.  This particular child isn't a talker, hasn't been for years.  So, bringing up hard things, sensitive subjects or trying to give council or advice has never been easy because said child isn't often receptive to any of those.

Tonight I'm wishing I would have had tonight's perspective, about 12 years ago.  I would have done so many things differently.  I would have asked more questions, I would have spent more time, I would have been more involved, I would have been more patient, I would have shown more affection and appreciation.  More than anything, I hate having these regrets.  I always wanted to "be more" and "do more" and "be better" at so many things.  I think that's a universal Mom thing.  As a young Mom, I think I did the best I could.  But then you're kids grow up and the storm starts to rage and things go to heck?  Ugh.

Sometimes anger is the emotion of the day.

I saw on FB yesterday that one of my stage 4 friends was moved to hospice yesterday.  I had a little anger fest on the inside, because just 4 months ago I was on the phone with her getting ideas for alternative treatments.  I knew she had done some unconventional things (in addition to medical interventions) and I wanted to pick her brain.  She has 4 kids, her youngest boys are 4 years old.  It ticks me off that cancer takes people before their kids can even grasp what cancer is.  Shayla is a beauty and TOO YOUNG TO DIE FROM CANCER!!!  You have been a great friend and example to me and so many others!  We will always remember your smile and spunk!

It's no secret that all chemo can do is prolong your life.  It is not a cure for cancer, at least not metastatic disease like mine (and Shayla's).  Shayla was desperate to prolong her life and stick around as long as possible for her kids.  I've felt her desperation, and have explored everything I could find (within reason, hahaha).  There are hundreds if not thousands of alternative cancer therapies, supplements, potions, juices, or whatever else.  There may be a testimonial here and there about how something saved them.  And they're all from websites that make money from the "miracle product" they are selling.

The only thing I found that had any validity is juicing and dense, high quality plant-based nutrition.  We even bought a juicer, a nice one!  And I just about lost my lunch just taking my first sip.  I simply can't stand the bland taste of celery, beets, carrots, ginger root and garlic in a drink.  YUCK!

On another subject, I went to the dermatologist today because I had a couple of suspicious spots on my upper lip.  Sure enough, precancerous.  So, not only do I have no hair, eyebrows or eyelashes, I'll have two blisters / scabs for the foreseeable future.  Right in the middle of my face.  But hey! It's not Melanoma.  😜

Lost.

I kind of feel like a lost puppy.  For so many weeks my routine was predictable.  Chemo, a couple good days, a couple bad days and the couple days of recoup before the next chemo, with lots of sleeping mixed in.  I'm not sure what to do with myself now!  I have a long list of "long term projects" I want to get done, but I haven't broken any of them out yet.  I need someone to come hold my hand and get me started on something so I'm a little more productive than I have been the last couple of weeks.  Ugh!

I've been a little bit discouraged (probably because I'm not doing anything productive!).  My nausea is pretty consistent, probably because of Ibrance, the study drug.  I'm used to the other two drugs, it didn't happen with them.  I also have my first mouth sore.  It's in a discreet spot under my tongue and doesn't cause me too much trouble because it doesn't interfere with eating.  That's a blessing!  Hair loss/thinning is another side effect of Ibrance.  So, just as my hair started coming in, it's thinning out again.  My hairline looks a little like Mat's, less on top than around the sides.  Looks great on him, but it's discouraging for me.  I just want to look a little bit like myself again.  Even a short sassy hairdo would make me feel confident.  I'm OK with being a cancer patient.  I just don't want to look like a cancer patient!  And I really want eyelashes again.  Having something to put mascara on would be fantastic! For the time being, I'll have to be content with the compliments I get about how perfectly symmetrical my head is.


Over the last few days, I've read this book by an amazing cancer friend, Laura.  If you want something inspiring to read, you gotta check this out!  Laura was diagnosed stage four breast mets 17 years ago!  She's been on 11 medical/humanitarian trips since then, which totally inspires me.  She gives some raw, honest details of what it's like to have "mets," and some fascinating details about the conditions they worked under in far off lands performing surgeries in filthy conditions on the few people (of hundreds) they could work in with the time that they had on each mission.  Follow your dreams people!  I got the Kindle version for $1.




I feel like I'm always referring to cancer friends.  I've got a lot of them.  When you've done this as long as I have, and you've been in support groups and gone on retreats, and attended seminars, you meet a lot of people who have what you have!  My network of cancer support is a blessing that can't be measured.  Yesterday I went to lunch with my cancer friend, Shauna (with her awesome husband Dave--he didn't come to lunch, he's just in the picture). We went to the Citris Grill in East Millcreek, because something we've never tried sounded perfect!  She's been on the vegan/vegetarian wagon with me for lots of years.  We both slip up and then climb back on.  I had a sandwich that was really good, but neither vegan or vegetarian!  Sometimes I just crave meat, something that packs a little more caloric punch because I feel like I'm always hungry.  It was great to get together with her, and feel her love and support for me.  Her Mom died too young of BC.  Shauna fought her own battle around the time I was the first time. She has the beautiful red hair I used to have.

I have so many other friends who have been caring, helpful and amazing to me too.  I'm very grateful for you's all too!  Yesterday, my visiting teacher, Lane, helped me cut up vegetables for a couple of dinners for this week.  I should clarify.  She turned on the Olympics and put me on the couch under a warm blanket while she cut up the vegetables!  She's so sweet, always thinking of ways she can help me.  Last month, it was a game night with everyone she and Haley visit teach.  That was a blast!  It was the first time I ever played Yahtzee, and luck was on my side!  Thank you Lane!

Valentines Day...whatever!

How's this for anti-climatic, we're postponing Valentines day until Saturday.  It used to be that Mat would take the day off and we'd go to lunch while the kids were at school.  He's much too busy for that now, it's too hard to prep for a sub with festivals and tour coming up.  I called him after school yesterday to tell him we're all off the hook until the weekend!  Besides, Maddie is coming home for the weekend (HOORAY!), so she'll be here too.

I went to the breast mets support group today.  Mets just means "metastatic."  I hear the term all the time, brain mets, liver mets, bone mets, etc.  First of all, I was calm and happy to be there.  Remember last month when I was having a crack up?  We had a large group today because we discussed brain mets with one of the specialists there at Huntsman.  Many of the women that came have brain mets.  One of those times I'm counting my cancer blessings.  I don't have brain mets!  We had a nice lunch and discussion on the subject.  My new friend, Tina, that I met at the retreat last weekend was there too, so that was fun!  They're a great group of women, very supportive and accepting of everyone that walks through the door.

This is my friend Diane.  She's been my friend for since the late 90's, first as a gardening guru that I looked up to so much!  I remember when I was just getting into the gardening stuff, she gave me a seedling of Caryopteris (Blue Mist Spirea) in a plastic cup.  She dug it up from her yard and was excited to share it with me! I had no idea what it was or what it would do.  She's changed careers twice since then.  Now she's my favorite masseuse!  I had my monthly massage today.  Her hands are magical, and I always come away from her house so relaxed and rejuvenated!

This is the "Michelle" I'm used to!

Tonight I went to see my friend Michelle.  Do you remember me talking about her?  She's disabled, she has cerebral palsy, epilepsy, and a host of other problems.  We've been friends for about 25 years.  She's always had a great attitude, she's happy and funny.  Except for the last 5 months.  We both fell apart at the same time!  I got my diagnosis, she got a highly contagious C. diff. infection and was in the hospital and rehab 3 times, and had 2 fecal transplants before it was taken care of.  Yes they do that.  She's been in so much pain, so miserable.  I was forbidden from going to see her in my condition.  I did break the rules a handful of times, and was very careful about what I touched and scrubbed my hands after I left.  But mostly we talked on the phone.  I felt so helpless because I couldn't really help her through a really rough time!  The C. diff. has finally cleared up, and she is back to her normal, cheerful self.  It was GREAT to see her!

Optimism!

This is the first Monday since the beginning of October that I've felt "normal."  I haven't experienced any of the usual side effects I had with Taxol.  Everyone told me that the treatments (Herceptin and Perjeta) will be a cake walk compared to what I had with Taxol.  It's shaping up that way so far!  I'll go for those every three weeks. I haven't noticed anything funky with the study drug either.  So I'm HAPPY!  I can see slight traces of colored hair, in addition to the white peach fuzz I've had for so long.  Best News Ever!  I came away from the retreat this weekend feeling uplifted, optimistic and with 6 new friends who get stage 4.  One of them does treatment at Huntsman and does the monthly stage 4 support group, so I'll see her regularly.


Today I took my business cards up to J and J nursery in Layton.  I worked there last fall, and they are anxious to have me come back.  I talked to my boss about what I thought I could handle as far as hours, and he's willing to work with me on whatever I need.  Stamina is my only concern, especially in the heat!  Me and one other employee will be their landscape consultation people, so that will be an opportunity to earn extra money outside of retail selling.  Since J and L closed, there's going to be A LOT of business at J and J.  I'll start up my landscaping again too.  It's about to get crazy busy!  I can't wait to get back to my normal routine!!!

My new calling at church! I'm the assistant Young Women's president!  What that means is that I can help out with anything I'm up for (camp, personal progress, activities, etc.)  If there are times when I'm not feeling good, I don't have to do much or do anything. The calling is totally built around my treatments and how I'm feeling.  I'm so excited to work with the youth and especially be involved while Brooklyn is that age.  I was released from my previous calling in September when all of this started.  I've felt kind of lost not having an official calling.  I just want to contribute where I can, do what I can to serve.  I'm super excited!

Scan Results

I know a lot of people have been waiting for an update today.  So here's the scoop.  The CT scan showed minimal improvement in my liver (discouraging!  The Taxol has reached the end of it's effectiveness), and no change in my lung (that's a good thing--we don't want anything changing!)

The bone scan picked up two spots, one on my left hip, the other on a rib on the right.  This was my first bone scan, so those spots could very well have been there all along.  But this was the first time we saw them and they're confirmed.  Despite that, it was punch in the gut to get that news!  It felt like losing progress instead of making progress! When you find out its spread to so many locations, it's just discouraging.  So those spots will be monitored closely.

The best news from today is that I found out I DO GET THE STUDY DRUG!!!  That just made my day, I was so happy to hear it!  The clinical study starts today, I take a pill every night.  It's called Palbociclib (Ibarans).  I've seen an ad on TV for it, but it's still in the investigational stages.  My meager understanding is that it will disrupt cancer cells from being able to divide and multiply.  That's as scientific as I'll ever get!

I did have an infusion today, Herceptin and Perjeta.  They are technically not chemo, but have many of the same side effect as the Taxol.  Sarah came with me today, I'm so grateful for her!  She helped point out the encouraging words Dr. Prystas said, because there is always faith and hope.

I left Huntsman and came straight to Park City for a retreat through the Image Reborn Foundation.  Image Reborn does monthly retreats for breast cancer patients, this one is specifically for stage 4 patients.  There are 7 women here, from as far away as Maine and as close as Park City.  We've had GREAT discussions tonight.  We're sharing our stories, and I feel a bond with these 6 strangers already.  We're in a large (huge) log cabin house that the owner donates for the weekend.  I'm in my own room, on a huge king sized bed that I get all to myself!  I have my own bathroom too.  :)  We have a chef coming in to do all the cooking, and we don't have to lift a finger.  There will be massages and facials and yoga and discussions relevant to what we're going through.  I'm the only one without hair, but everyone is in active treatment.  It's going to be a great weekend!

One thing we talked about tonight is the word "survivor".  Are we survivors?  It was just a random question asked by one of the ladies.  Most of us don't want that label, I certainly don't.  I felt like a "survivor" in 2011 when I got through everything related to my first cancer.  In my head, I had survived and it was the stepping stone to the rest of my life.  But Stage 4 changes everything.  I'll always have cancer in my body.  Chemo and other drugs will work for a time, then become less effective, and new drugs/treatments will be tried.  I'll have CT and bone scans every three months to see what changes.  This is my New Normal.  I am learning to accept that and learning to put my faith and trust in Heavenly Father who loves me, and know He will help and support my family through this entire journey, however long it lasts.  I'm GRATEFUL for that knowledge.  One woman describes herself as an "active cancer fighter".  I like that better!

Scan + Scan

Can I just say how grateful I am for the friends who drive me to Huntsman when I have stuff going on?  I could drive there by myself.  I could sit there by myself, I could even drive myself home again.  It wouldn't be a big deal.  But it's a HUGE deal for me to have the willingness, the love and support from SO MANY PEOPLE!  I occasionally see people sitting in their recliners in the infusion room alone, and I wonder where their people are.  I think I'll make a point of going to talk to those people for a few minutes.  It makes me sad to see them alone.

My friend Bonnie drove me to Huntsman this morning, and stayed with me through my drinking of that disgusting berry smoothie contrast, the injection for the bone scan, and the CT scan.  It takes about three hours for the injection to make it's way into your bones.

We went to the Pointe restaurant after the CT scan because I hadn't eaten anything (except berry smoothie), and I really needed to get food in my belly.  Not too long after that, Sharla came so Bonnie could make it to another commitment.  See what I mean?  Sometimes we tag-team the love.

If there's cancer in the bones, it will light up on the scan.  The scan itself was painless but I definitely felt claustrophobic!  I just had to close my eyes and be patient.  They checked my pelvis, skull, ribs and did a full body scan.  I already have significant bone loss for my age, so it's something to monitor.

The bone scan machine, and a random stranger

If it goes like last time, I'll hear from my nurse tomorrow with the results.  Then I'll get the details when I talk to my oncologist on Friday for our regular 3 week check up.  Of course I'm nervous, but I'm not losing sleep either.  It is what is, and we deal with what is.

People often ask me how my family is.  I'd say that the older three kids tend to mirror whatever I'm feeling.  So, if I'm having a meltdown, they are too.  If I'm calm and optimistic, they are too.  If I'm tired and impatient, they notice.  My littlest seems to accept my hairlessness, and doesn't seem to worry about "cancer", but will meltdown over little things that are totally unrelated.  That's when I know she needs some "Mom" time, and we cuddle on the couch with my fuzzy, soft blankets and talk until she feels better.

Of course I worry about the kids, but I really worry about Mat.  He carries such a heavy burden.  I often ask him how he is doing, he'll sigh and say he's OK.  Tonight he said to ask him on Friday how he's doing.  I love him so much, he's such a good man.  It's hard for me to know he's suffering but carries on anyway.

We were both released from callings when I was diagnosed (he was Ward Mission Leader).  Service is the backbone of the church, and I don't have a problem with it, but it was too much.  Mat would love to be the organist, but for now, he's a husband and a Dad.  I had a brilliant calling offered me today--more on that later!  It will make perfect sense when you know what it is, but it might sound odd coming across the pulpit.  Suspense!


She'll hate me for this, but I have to give a shout out to my oldest friend Diana.  Not oldest in the sense of "old" but in the sense that I've been friends with her longer than anyone else I know!  Our parents were best friends, and we were born 5 days apart.  So I've know her since we were born.  We went to lunch on Monday and had a marvelous time talking for 2 ½ hours.  She's one of the funniest people I know, and I love talking to her.  So glad we could make "lunch" happen!

Just One More Taxol!

This will sound weird, but I'm going to kind of miss my weekly chemo.  I've been lucky enough to have a friend come with me to every treatment and scan since I started this in September.  I have one more Friday, Sarah is coming with me for that.  I have a CT scan and bone scan next Wednesday.  And after that, I think the plan is going in for an infusion every 3 weeks.  I've enjoyed so much being able to talk to you, to laugh with you, and sometimes cry with you.  It's been a tremendous blessing to me!

Navigating stage 4 is tricky business.  Sometimes I feel optimistic, and sometimes I just don't!  I'm feeling a little anxious this weekend, as I anticipate my scans on Wednesday.  I have to go in early for an injection specific to the bone scan.  I've never done a scan like this, so I assume they are wanting to light up any cancer that may have spread to bones.  I have no idea what to expect.  

On Friday, I needed to pick up the "berry smoothie" drink while I was there, but both Regena and I forgot completely, despite spending a lot of time sitting around waiting for things to happen.  It took 3.5 hours to get through the one hour infusion.  So, I'm going back up on Monday to get my berry smoothie so it can be chilled when I start drinking it early Wednesday.  Please pray with us that we'll get good news from BOTH scans!

Tuesday I'm going up to Ogden to attend the temple with a dear friend, Jenny.  She is another friend of Michelle, they've helped me so much!  Me and Michelle fell apart about the same time.  She was diagnosed with a C. Diff. infection about the same time I got my diagnosis.  So I haven't been able to help Michelle like I normally would have.  Jenny and Dave picked up some of the slack, despite their own health concerns and large family to take care off.  I love them a lot!  They've been good to both Me and Michelle.

Please don't feel sorry for me.

The kids didn't come to the funeral today.  McK already missed two days this week because she was sick.  Brooklyn didn't want to take a chance at lowering her A average  :)  and Isaac needs to be in school.  The funeral was a very nice tribute to my brother-in-law.  I learned some things about him today that I'd never heard.  Like, how do three 4th graders decided to skip school one day and expect to get away with it?  Dan was a good man who dedicated his life to scouting and helping people.  And a bagpiper did two musical numbers, IN THE CHAPEL!  It was SUPER cool!  I told Mat on the way home that I want that too.  Not that I'm planning my funeral, but I've always loved the pipes.  Something about my British heritage ...

A lady approached me today because she recognized me as Val's sister.  She started talking to me about her cancer 15 years ago, and this ... and that ...  I can't remember what she said to bring it up, but when I told her I was stage 4, there was almost an audible gasp, like "You poor thing, that's terrible!  You're going to die!"  So many people don't understand that stage 4 doesn't mean death is imminent.  It certainly can be, but not for everyone.  I do have good days where I just feel like the average Joe.  If I had hair you'd never know I had cancer, because I'm just like everyone else.

So, please don't feel sorry for me.  I know a lot of people whose burdens are heavier than mine.

One funny/awesome thing: Brooklyn has decided she loves to bake and make foods she likes.  Dinner rolls, scones, brownies in particular.   And she takes the initiative to do it!  Today when we got home, she announced that she had been to the store, used her own money and bought 3 avocados, one for the next three days.  She loves guacamole, she makes awesome guac!  She had one while we were gone today, and will have the other two this weekend.  I love this girl!

Where did they go?

We're going to a funeral tomorrow and it's made me just a "titch" uptight.  I'll see family members I haven't seen or talked to in a long time.  Not in a "oh, you live so far away" sense, but in a "Hey Kim, I don't want anything to do with you" sense.  Oh what fun.!  We're just going to the funeral, but not all the fun after that.

Tonight as we were getting ready for bed, I asked Mat if I should try to put on make up tomorrow.  He doesn't care what I do, he loves me just as I am!  He said (paraphrasing) "nah, you don't need it." I got looking after that and realized that I can count on two hands how many eye lash / eye brow hairs I have left.  A few weeks ago, I bought magnetic eye lashes because at the time I had enough to fake those.  Not any more!  :)  Oh, I hope I get my hair back!