#11 In The Books

The 12 Days of Christmas, day 3

The third day of Christmas is super cute chemo caps!  I mean, can a girl have too many hats to cover a cold head?!  These had been delivered before I came home from chemo.  People are incredibly generous with us.  As hard as my life is right now, I feel so much love and compassion from the people I know, and in the case of the 12 days, people I don't know!  When I was in the infusion room, gearing up for chemo, a grandma and mom came through with fuzzy, big, NICE, warm blankets, handing them out to the people getting chemo.  The tag on the bag says, "Keep up the fight, stay cozy in memory of Crystal Marie."  Crystal is the daughter/granddaughter of these sweet ladies.  Ladies who were inspired to do that one thing that they could to brighten someone's day.  It definitely brightened mine!  My friend Geri brought me some vegan chocolate this afternoon as well.  So I'm going to curl up in my warm blanket, eat my vegan chocolate, and watch a move with my man.

Me and My Tree - as close as I've
been to nature in a long time

My friend Bonnie came with me today.  This is the same Bonnie who does the AromaTouch massage on Mondays.  When you get to the infusion room, they show you to your pod and recliner, and the nurse comes to ask about side effects you've experience through the week.  I added two to the list today.  One started last night.  My four front teeth on top randomly start feeling like they're sitting in ice cream, like teeth freeze for no reason!  It just comes and goes, and is, Oh, so unpleasant.

As I rattled off my list of super fun side effects, Bonnie was surprised by what I endure every week.  My life is hard, but things could be worse.  I could have neuropathy in my hands and feet (KNOCK ON WOOD!).  I could be in pain (KNOCK ON WOOD!), I could be lying in a pine box (KNOCK ON WOOD!).

The nurse ordered some extra tests to check potassium and other stuff.  And she ordered an extra liter of fluid, because I'm dehydrated. The irony is I always have water with me, because my mouth always feel like it's full of cotton balls.  I know I don't drink enough water for chemo, everyday is a water battle.  The remembering . . .  Today was just the Taxol, so it went relatively fast.  The best news of all is that I get to take next week off!  More on that in a few days!!!

Something Bonnie said today made me think about a mission statement I wrote for myself a few years back.  I wholeheartedly believe that if you don't know what you want, and it's not articulated, you'll never get it.  I struggled with what I wanted to do and who I wanted to be.  I thought about it for a long time.  This came to me in the middle of the night one night.  The words started going through my head, I jolted awake and realized these were the words I was looking for.  I wrote it down, almost word for word like it is here.  Not many words, but it sums up perfectly what I want for my life.  So here it is, I keep this on my bedside table.

My dreams encompass meeting the needs of the less fortunate around me.  To stand ready to provide financial assistance to the destitute when I can, to provide emotional strength to those who suffer, and to offer a hand up when I see opportunities to help others help themselves, whether on this continent or another.

One of my BIG, HUGE bucket list items is to go on at least one humanitarian trip in my life.  I've always wanted to do it, but never had the resources.  I've always dreamed that me and Mat would go on a bunch of Humanitarian missions in our later years.  To this point in my life, my contributions to the world are what I can do locally, but I haven't given up on a trip to Africa or some other place where I can share my love for people, no matter who they are or what they've been through.

Me and Mat met with Annie, LCSW this week.  Mat's been so busy the last couple months that this was the first time we could get the three of us together.  She's such a great lady, knows what to ask and anticipates what our challenges are.  She understands the reality of what we're facing too, so she's compassionately realistic.  Stage 4 is no joke, especially when it's living in my liver.  It's an uphill battle, but it's one I'm willing to fight!

p.s.  It took my college age daughter to find the flaws in my math on the last post.  The math has been corrected!  :P

My 200th post since this all began in 2009

I've had a good weekend.  It's crazy how I can come out of a big chemo on Friday afternoon and feel just fine for about 48 hours.  Then, the nausea hits, and shortly thereafter, extreme fatigue.  After dinner tonight, I laid on the couch under a blanket and slept in and out for the rest of the night.

Mat came home late tonight from his performance in Bluffdale and meeting with his family afterward.  He ushered me to bed, tucked me in, and then crashed himself.  He's so exhausted from all the extra concerts that come with his job in December.  His talent is being able to hit the pillow and be asleep within minutes ... and snoring.  My talent is insomnia, hyper-sensitivity to noise at night, and anxiety. Not a great combination!  I generally sleep on a different bed than ours.

This week I'm getting an AromaTouch massage from Bonnie, meeting with Annie, LCSW at Huntsman (Monday), a foot zone by friend Charity (Tuesday), my friend Regena is coming Wednesday morning to help me with a cooking project, and then I'm going to the Stage 4 BC support group at Huntsman.  That will be my first time there.  I won't be in denial any longer.  I qualify for the group and need that association desperately!  By Wednesday, Thursday, and Friday I'll feel pretty good and have some energy and enjoy food a little more.  And then it starts again.

When I talked to nurse Kathy on Friday, she said they wanted to do 18 cycles, x 3 treatments per cycle.  That's doses 54 chemo.  18 Fridays spent in the recliner being poisoned.  It feels like Feb. 2nd will never come.  The clinical trial starts after all of that.  The good thing about that is constant monitoring of tumors and progress, and maybe getting the trial drug (Please pray I'll get the trial drug!  They've had great success with stage 2 and 3 patients!)

Post Scan Emotion

The night before my scan, I was having a little anxiety attack.  It was scary to think that the next day's results could be totally devastating or a huge relief.  I would say the results are somewhere in the middle.  Mat skipped a meeting this morning and came with me for the meeting with Dr. Prystas.  He's the dude!

My neck is totally cleared up.  No visible signs of cancer left there.  Great news!  What I didn't know from the first scan was that there were "multiple" lesions in my liver when I started.  I was only told about the two biggest ones, the significant ones.  This weeks scan showed a "few" lesions, the measurable ones have shrunk by about ⅓.  So, ⅔ of the tumors are still there.  UGH.

They want me to do a total of 6 cycles (18 treatments), today I started the 4th.  So, I'm not as close to finished as I hoped I would be.  In reality, I'm only just over half way done.  If I understood correctly, the clinical trial won't start until after I'm done with chemo.  In the beginning, when this stage 4 crap started,  I thought I would be OK to do chemo forever if it meant that they would keep shrinking and going away.  Now, I just want a break from the side effects.  I'm sick and tired of being sick and tired!  I feel like a science experiment. 

One of the blessings of being in this cancer club is meeting so many great people along the way!  My friend, Marie, was with me today.  She brought me the BEST, most delicious, not-even-close-to-vegan Mint Brownie from the cafeteria at the Church Office Building.  When I worked there, this was the one dessert I couldn't resist.  It made my day to see what she had when she pulled it out.




















 And then there are the friends who want to remain anonymous.  I love them every bit as much!  This came in the mail this week.  I don't know who it is from, but I'm very grateful!  They are silk handkerchiefs, so soft and wonderful.  It's not the first time something has shown up on my doorstep and I didn't know who it was from.

This cute handmade card came from our neighbor, Kyra.  Her Mom brought us dinner this week, and Kyra came with her to drop it off.  This is such a sweet sentiment, I have it hanging on my fridge.

A friend talked to me on Sunday and said she wanted to come help me on Thursday morning, early, with whatever I needed.  I told her I wouldn't be up yet, but she was welcome to come in and look around!  I woke up to sounds from Teri, cleaning the kitchen and other things.  She just looked until she found cleaners and tools, and worked until I came up.  She waited until I was up to vacuum.  :)  So thankful!

This morning as we were pulling out of the driveway, my cancer friend, Regena pulled up.  She asked if there was something she could do for us while we were gone.  "Laundry!" I said.  She she pulled into the driveway as we were pulling away, and started our loads, and worked on it until Brooklyn came home.  I'm sure she was in and out, she wasn't here the whole time!  But, another super thoughtful gesture from a friend who knows the pain of cancer, and is willing to do anything she can to help.  We are so blessed!

People say all the time, "Please let me know what I can do to help!"  I'm overwhelmed and can't think of things on the spot.  But if you say you are coming on this day at this time, we'll look around and see what there is to do.  :)

Here's a fun fact: Mat's been keeping up on our insurance stuff.  He said today that the weeks when I get the three drugs, the insurance pays out $22,000 to Huntsman (or whoever).  22K times 6 = $132,000.  That's not the small treatments-there's 12 of those.  That's not my surgeries, port, anything else.  Just 6 chemo's, 18 doses of drugs.  All since the first of September.  Are we grateful for insurance??  YES!!!

Time for a SCAN!

Tomorrow is my CT scan, so I can't eat breakfast.  But I do get to drink 2 big bottles of barium sulphate spread out over the 1 ½ hours before my appointment.  It's the berry smoothie flavor, I call it "disgusting."  I've had some anxiety over this scan, knowing that it will be really great news or really bad for morale.  We're praying . . . it sure would be great to get good news and know that all the emotions, and side effects, the worry, the hair loss, and tears and heartache was worth it!  I'll update again when I know what's up.

Stage 4 SUCKS!

For the last 3 months, I've been in a deep depression.  I do better when I'm out and around people.  I can't function when I'm home.  Every dirty dish or pile of junk overwhelms me to the point that all I can do is sleep on the couch or watch TV.  Every meal overwhelms me, I don't like eating anything.  I feel bad for my kids who haven't seen "me", or what used to be me, since this diagnosis.  I don't have the energy to engage, help with homework, give guidance or be happy.  Poor Mat is as overwhelmed as I am, but he has a 60+ hour a week job plus the Christmas performances on top of it all.

This has knocked the wind out of me.  I don't know how to be OK.  I don't know how to have hope.  I don't know how to come to grips with this, how to accept and be OK with it.  Last time I did cancer, there was an end. There were 8 treatments that would end on this date.  I had one tumor and one lymph node with trace evidence of cancer that were removed.  Chemo was a "just in case there's any floaters" scenario, because I was young.  This time, there is no end in sight.  This is my life, my new normal.  Please pray with me that acceptance and resilience will come and my "happy" will come back.

Christmas Classes

I taught 3 Christmas classes this week, which has been really fun!  It's cool to see people get excited as the ornaments get added, then red berries, and it clicks for them.  Everyone loves how it turns out and leaves with wheels turning, planning out how to do their trees in a different, more beautiful way.  Not that kid ornament trees aren't beautiful (in their own way!) but Temple Square style trees are pretty remarkable and unique in their style.  From ornament prep to the finished product, it all makes so much sense!

Tomorrow is my 9th treatment.  It will be a "small" one, just Taxol, so it won't take too long.  I expect everything will go just like it always has.  My cancer friend, Regena, is coming with me tomorrow.  And we're going to get Indian food before, just for good measure.  I've been discouraged today.  I called my nurse this morning because I was unsure about chemo next week.  My CT scan is on Wednesday, by Friday we'll have results.  So, if the cancer has responded like I hope it has, would I continue doing chemo?  Yes--to 12 treatments.

Chemo's side effects are wearing on me.  Fatigue, fatigue, fatigue, constipated diarrhea (yes, it's possible), a runny, bloody, raw nose that never stops (I should buy stock in Kleenex), taste distortion--nothing tastes good, super dry skin, and unquenchable thirst.  There comes a point where you just want to put all that behind you.  I'm looking at the New Year before there's a possibility of that.  I'm assuming things go my way.  So it's discouraging, I thought I'd be getting a reprieve after this week.  Blahhh!

My sweet Aunt Jeanette sent me this necklace--I love it!  What a great constant reminder that these are the most important things in life!  I'll wear it everyday.

I also wanted to post a picture of the awesome vegan treats my friend Shellie makes for me.  Lately, she's kept me well stocked with treats I can eat, which I'm so grateful for.  Who doesn't need chocolate everyday!  If I was going to choose a candy bar, it would be a Reeses, so these healthy peanut butter cups are perfect, and SO good.  I keep them hidden, they're too good to share with little people.  :)

Gratitude!

This year, we've been so overwhelmed with help and blessings and meals!  Weeks ago, I sat down with my friend Cindy, and we wrote Thank You notes to everyone who had donated money to our medical expense fund.  So many people have reached out to us!  Even more has been donated since our goal was reached.  I feel like I'm so far behind, it would be impossible to thank everyone personally because the blessings just keep rolling in, and I can't keep track of it all!  So, if I never get these cards out, I hope every one of you knows how truly grateful we are for everything that you are doing for us right now!  I hope that I have adequately expressed it in my day to day life!

I had a cancer friend, Charity, reach out to me a couple of weeks ago.  She does "foot zoning" and offered to help me through chemo by working those toxins out of my body.  She came clear from South Jordan on Monday, and I was so grateful!  She has a very light touch, but I was amazed at the results.  It was great to talk to her, and find that the life changes we made as a result of the original diagnosis are very similar.  I hope she never has to deal with another diagnosis.  My wish is that no one would ever have to deal with a diagnosis in the first place.

Mat was really excited to pull out the camper on Wednesday and take it for a drive, practice backing it in to a space, etc.  And the kids were super excited about sleeping in it!  All four of them packed bedding outside and set up their beds, and made it all night-despite the cold!

Thanks to Jeanne and Cathy for coming to chemo with me yesterday!  Everything went fine, just as expected.  I can't imagine doing chemo alone, even though I feel good enough to drive myself and get home again.  Having friends there makes all the difference to me!  This Friday is #9, CT scan happens on Dec. 6.

I got to see another dear friend, Olivia, for dinner yesterday.  She's here from out of town, and is one busy lady, but she made time for me.  Livi is one of my favorite people, she moved into our ward when we were teenagers.  But it took us both being married with kids before we figured out we could be great friends!  She's lived and traveled all over the world, and has so many great stories, and dreams, and aspirations!  There was so much stuff to talk about that cancer never even came up.  I was happy to have a respite for a couple of hours, to just not think about it.

I taught another Christmas tree class last night, this one at my house.  It was especially fun because I didn't have to dismantle the tree after I got it decorated!  :)  I've been buying ornaments for this years tree since August (love Hobby Lobby!).  And, in my humble opinion, it's GORGEOUS!  I've got 4 more classes scheduled, and would do more if anyone was interested.  I love sharing what I learned about decorating last year!

Maddie went and turned 20 on us!  She's such a great girl.  I'm so proud of everything she's accomplished.  She's grown up a lot at Snow College, it's been a great experience for her.  She's paid for everything on her own, and learned a lot about life and budgeting and priorities.  She'll get her associates degree after next semester, and then move home and figure out what to do with her life after that.  :)

Becca, a friend from Wasatch Peak Academy (where our kids go to school) contacted me a couple of weeks ago, she had just heard the news.  She, like so many, just want to help.  She has a friend with a house cleaning business and offered to pay to have them come clean our house.  Arrangements were made, and two women came today (who also have kids at WPA) and cleaned every corner of our house, it looks amazing!  I told the kids they weren't allowed in the kitchen or bathrooms ... ever again!

What would I do without my friends?

This is what a dear friend said to me after the last blog post:  God is full of miracles!  That's what I think.  Man can give you a guess of time (left) ... but it's really up to God!  That's where we place our faith, and he knows you and loves you!  He has a plan for your life!  It is not just a random, whatever happens happens deal.  You are His precious child and He has a specific plan and purpose for your life.  You will not go until you have fulfilled your special purpose ... and He calls you home!

This is exactly what I needed to hear, because as much as I want to be in charge of this disease and my life, I'm not.  It will take time to get this idea ingrained in my head and spirit, and I'll have to remind myself again and again and again.  It will take time to understand cancer's purpose.  It will take time to accept the plan God has for me, because this isn't what I planned for my life.

I want to get back to feeling "normal", when I can return to work and run my business like I always have.  I want the energy to get through the day without sleeping half of it away.  I want to somehow put cancer on the back burner in my head, so I can be truly happy, engaged and involved with the people and events around me.  I put on a good show, friends.  It's easy to let stress and worry overtake and overwhelm me.  So, I will work on remembering the inspired words shared with me by my friend.

Venting . . .

It's been a rough day.  It was my "big" treatment, and it went just fine.  No issues, I feel great.  My BFF from high school (Sarah) came with me, and we had fun coloring and watching a movie with shared headphones.  I've been thinking about getting a splitter so I can plug in two sets of headphones to my laptop, but I never got around to it since she came with me three weeks ago.  We watched Shadowlands, which is such a tender, true story about C.S. Lewis who falls in love and marries an American woman later in his life.  And then she up and gets terminal cancer and dies.  "The happiness now is part of the pain then."  "The pain now is part of the happiness then."  It's really good, watch it!!!

I had a couple questions for my oncologist when I saw her this morning.  I can't remember one because the other one consumed my thoughts the rest of the day and made me so sad.  I asked her what I could expect in the course of the treatment cycles that will come.  She told me that we'll do the CT scan (December 6th) and then assess what to do.  It's looking like cutting back on chemo, because  the lumps in my neck seem to be totally gone.  The tumors in my liver are probably smaller too.

And then there's this cycle, where the cancer grows again, and then chemo gets more intense again, and then we do a scan again, blah, blah, blah.  But over time, the chemo won't be as effective, and that's when it starts to grow out of control.  I'm paraphrasing!  So, let's say she told me in the first appointment that I had 23 years.  Today she said 22 to 23 years.  She jipped me a year, and it hit me between the eyes.  Why is it, that in the 21st century, chemo can't just KILL ALL CANCER CELLS?!?  That's my question for when I see her in 3 weeks.  I just don't understand.  I'm not just relying on chemo to kill my cancer cells.  I take Copaiba and Frankincense, and have a host of supplements that I feel are helping me too.  AND I signed up for a clinical study today, so I have a 50% chance of getting an additional drug to help me fight my fight.

On the brighter side, I did two Christmas tree decorating classes this week.  The generosity of people, even strangers, never ceases to amaze me!

I went to Time Out For Women tonight, a gift from my friend Karin.  It was so amazing and inspiring.  Sometimes I have a little attitude about feeling like it's just a marketing event Deseret Book (which it is).  But the speakers and music tonight were AMAZING.  Tim Ballard, Nathan Pacheco and Sheri Dew.  Not sure who's on the docket for tomorrow, but I'm excited for it!  And, Geri T. was sitting two rows behind me, and she was with one of the cancer friends I met years ago.  Small world!

One More Thing!

I have some openings for more Christmas tree decorating classes! We can schedule these at your house with as many people as you want, or at my house--5 per class--because I'm so limited on space, but either one works for me!

November 16th during the day
November 21st during the day
November 22nd day or evening
November 28th to the 30th, day or evening

I'll be putting up my own tree the evening of the 24th, so if you want to come watch that unfold, let me know! I'm happy to make that a class as well.

Let's do this!