#cancerstillsucks

Lest anyone think I am always put together and positive and smiling, I'm not.  I can't seem to hold it together tonight.  Maybe I'm processing having to shave all my hair off a few days ago.  Maybe I'm angry, or mourning, or both.  I think about what we were doing just a few weeks ago, going about our lives, completely oblivious to what was about to happen--that apologetic phone call from your oncologist.  I love her and her team, and I'm grateful they are on my team!  But sometimes, I just need to be mad, and sad over having to go through this.  I have to be angry over my family's suffering because I'm suffering.  I let the tears flow tonight, we talked about it being OK to cry.  Me and them!  "When one door closes, another one opens, but it's HELL in the hallway."  We're in the hallway.

I am ⅓ of the way to another scan.  Six more treatments, and we'll be able to see if what we're doing is working.  December 1st (Mat's birthday!) is my 9th treatment.  A CT or PET scan will follow shortly thereafter.  I can tell you already that the lumps in my neck are shrinking.  I used to feel marbles up and down my neck on the left side.  I can still feel something in there, but the marbles seem to be gone.  The tumors in my liver are the wild card.  What they do or don't do . . .  ugh.  We'll face that when the time comes.

I know there are so many people praying and fasting.  We are so grateful for all the help we've received in this and so many other ways.  You are our angels, Gods hands are touching us through you.  We are forever grateful.

Louise and Brooklyn!

Brooklyn turned 13 today!  I can't believe we have another teenager in the house!  She's an extraordinary girl, so helpful, patient, kind, and amazing!  We love you dearly Brooklyn!

For her birthday meal, she chose Cinnamon Toast Crunch . . . and dinner rolls!  That's what she had for breakfast.  :)  I guess that's good, because last year she wanted to go to Chuck-A-Rama, and that cost us considerably more than this.

The other picture is me and Louise, my favorite
91 ½ year old!  We went to lunch this week at Sunshine Cafe, one of her favorite places to go.  After that, she "kind of" insisted that we go to Walmart so she could buy me a sweatshirt.  She doesn't want me to get cold this winter.  How could I refuse?!  I couldn't.

I love Louise because she loves gardening as much as I do.  But the memories I'll always cherish are the times she would drive down the street (the other Bountiful house), and honk when I was in the front yard working.  Often, scaring me to death.  She would always stop so we could talk for a few minutes.  She's an amazing lady!

I got jipped! (treatment #3, in the books!)

My hair started falling out yesterday, which was so hard!  Today, when I pulled on the ends of my hair, it came out in big clumps.  I pulled and pulled, and just pulled hair out with no resistance.  I knew the time had come.  When I started chemo two Fridays ago, the nurse said it would be 4-6 weeks before my hair would fall out.  I didn't even get to the third treatment (or three weeks).  I did get jipped!



This is a professional photo I had taken last time.  This was early spring 2010.  I have a few more wrinkles now, but I look about the same with my shiny head.  I didn't have the heart to have my picture taken today, that will come in time.  I'll get used to my new look and be more comfortable with it.  Maybe I'll collect new funky earrings?  :)  My hat of choice is a baseball cap (even to church).  You won't be seeing any scarves, and certainly no wigs, on me!  Not.  My.  Style.

Mat's the one who shaved my head.  We tried to get kids in on it to, but they didn't want to.  I thought Isaac would jump at the chance, but No.  Maddie is home for the long weekend, so she helped him clean up spots he missed.  It's always great to have her here!

Chemo went as expected, no surprises there.  Except this: just after I got settled in my recliner, a lady in the next pod over started having a reaction to her chemo.  It was horrible listening to her, not because I was annoyed or inconvenienced, but because I can't imagine how terrified she must have felt.  It's a fear we all have, when you're sitting there getting poison pumped through your veins.  Immediately there was an army of doctors, nurses, and other helpers that swarmed around her and got her stabilized and breathing again. Having cancer is hard enough to deal with, but when you almost die getting the treatment design to get you better, that's TOO MUCH!  Her poor husband.

Some days . . .

This happened on Saturday!  We're long overdue for a family picture, and I thought it would be good to take care of it before I lose all my hair!  #hair-is-over-rated

Kelly Sansom, of Gallery Photography, was nice enough to send me one edited image before the rest come the end of this week.  I. LOVE. IT!!!

My nausea hit yesterday afternoon, right on schedule.  I've felt BLAH today, but got through it with only one nausea pill.  Good!

This happened this morning!  With the gracious help from Karin and Darryl, who picked the grapes for us; and Lori and Cindy who came to help me get it all bottled and processed.  Twenty seven glorious quarts of the BEST, darkest purple concord grape juice.  I can't tell you how much I love it.  Sends me right back to my childhood, when my Mom would bottle grape juice, and anything else she could get her hands on.  I miss my Mom!  

This afternoon, I met with Dr. Lopez, a "complimentary therapies" doc at Huntsman.  She gave me great information about how to get through cancer this time around.  Just take care of yourself, nutrition, exercise, stress management, blah blah blah.  I've had to process that tonight, because I was in the best shape of my life when it happened the first time around.  I was very conscientious about exercise and diet before I got it the first time.  So why did I get it in the first place?!  And why am I dealing with it again??  Obviously, still processing.

Infusion #2

I got lucky enough to have a private room today, so I didn't have to listen to all the TV's around me.  Hooray!  The infusion room at Huntsman is split into Pods (unless you get a private room), there are 4 stations in each pod, and a nurse and medical assistant for each pod. Each station has a standard TV with the speaker in the remote, so ... not so fun.  Because I don't want Family Feud in the background!

The infusion went perfectly today, no surprises!  A one hour infusion takes three hours.  They draw blood and send it to the lab.  They check to make sure your white/red (?) blood cells are high enough to handle it. Once those results are back, they order the infusion from the pharmacy.  They mix it and send it to the infusion room.  Meantime, they pump me full of steroids to prevent an allergic reaction, and then finally, I get the infusion.

One of my cancer friends, Regena, came with me.  She lives in our ward and was diagnosed with the exact same cancer, within weeks of me last time, and we had the same treatments.  So we were baldy's together, sitting on the back row in RS.  Thankfully, she didn't follow my lead this time.  We should have taken a picture together, dang it!  Next time.  Today, I colored!  And laughed with Regena.  She's fun to talk to!  Mat came by on his way home, so I rode home with him.

It's been such a weird week! So many great things have happened, but then there's those moments.  Wednesday I was in the dump for some reason.  I got up at a pathetically late hour and just couldn't pull myself up by the boot straps.  Some days, the thoughts of what's possible hit me hard and make me so sad.  The day ended well though, Mat had his fall concert.  Me and McKinley went, and she got her kale salad at Cafe Zupas, so she was HAPPY!  And that made me happy.  :)  She's so funny, she just inhales it like there won't be food to eat for a week!

I got a package from my sister-in-law this week, and even seeing it on the porch made me smile!
Jeri is a bright, cheerful soul and I love her dearly!  She endured so much when my brother was going through cancer (Glioblastoma) and his death last July.  She's doing a great job as a Mom of Sydney, and I love them both.  She's so thoughtful!  Plus, MILKA!  She knows I love Milka!  I ate them ... and ate them some more on my mission and ever since.  25 Years of Milka Happiness.

    
I've received kind gifts from Colleen and Haley this week, and a visit from my gardening friend, Jenny.  Heck, I'm so blessed!  Cindy came and spent the morning on Thursday, and helped me write Thank You notes to all the people who have donated money to our medical fund (they aren't in the mail yet).  I'm so grateful that covering my "out of pocket maximum" isn't something we have to worry about.  Enough was donated to cover the entire amount.  What a blessing!  And another blessing, our plan year started September 1st, so it will be a whole year before we have to worry about that again.  Blessings, I tell ya!

Last night we went to Ephraim for Maddie's choir concert at Snow College.  Carmina Burana!  Such a great piece of music!

These are two of her roommates that are in the choir as well, and such good friends to her!

Tomorrow we're getting family pictures done by Kelly Sansom, Gallery Photography.  He's the dude! So good at what he does.  and for the first time ever, we'll be all matchy matchy!  I actually planned a color scheme.  Stay tuned!

Mostly Good!

A funny thing happens when you get cancer.  You're automatically inducted into this club that no one wants to be in.  I have SO MANY friends that I met through this cancer club, and I'm so grateful with my association with each one of them!  This morning I went to Murray to pick up a bed frame, and got a text from one of my friends, Shauna!  We were diagnosed about the same time last time, I met her at a luncheon for breast cancer survivors.  When we met, we both had really short, red hair - I knew she'd be a forever friend!

We decided to meet at our favorite Indian place, because when you can't taste stuff, there's nothing better than spicy Indian food!  It was great to see her and spend a little time together.  Thanks for thinking of me Shauna!

I had a little time to stop by the Murray DI too, and I hit the motherlode!  I love having a good day at DI.  It's right up there with dark chocolate (which I haven't eaten in almost a month - blahhh!), a date night with Mat (which is so often . . . DI!), or putting on my fuzzy pjs, making popcorn, and watching a movie.

And then I thought, what the heck!  I'll go see my little brother!  My brother, Jon, is at least a foot taller than me.  We're not sure where he got his mutant genes, but he's the coolest little brother anyone could ever want!  And look at Nubbin, had to go see him too!  If you ever meet Jon, ask him about the heirloom park bench statue (a wedding present for my parents in the mid 50's) that I hit instead of him.  Remember back in the day, when phones were corded, but the receiver was really easy to unplug from the cord?  And when it flies at a high rate of speed, it can do some damage.  But it didn't do any damage to Jon.  My mom did glue it back together, but it forever had a dime-sized hole in the top that couldn't be fixed because the pieces were too small to glue. 

We've had so much food brought in the last couple of weeks!  We had dinner brought in again tonight for us.  You know the really remarkable thing?  Not a single person was asked to do it through the RS.  Every single one thought about us, cares about us, and offered to do it on their own (that's what I've been told).  It's been amazing! The food and the thoughtfulness!  You know who you are, THANK YOU for your kindness and concern for our family!

Friends who are blessings

This morning we went to our niece's daughters baptism out in Stansbury Park.  When we got out there, I texted Gidget, the other dear friend I worked with at Temple Square last Christmas.  She lives out there and I hoped I could go visit her.  Turns out she was coming toward Bountiful to see me!

My sweet friend was on her way to bring me the softest fleece blanket for chemo and this beautiful arrangement from my friends in Floral Services.  She left it on my kitchen table (because I told her how to get in my house!) and it totally made my day!


This afternoon I got to visit with one of my favorite mission companions too!  She lives in Tridell, near Vernal, and I don't get to see her very often!  I have many fond memories of our time together in Germany.  She "made me" eat Milka chocolate everyday.  We laughed and cried together.  She's definitely one of those people who shaped me and made me a better person.  I love you dearly Wanda!

And if all of that wasn't enough, Dimes and Bella (Camp Kesem BYU counselors) came and picked up my kids and took them to dinner, and then took Maddie to the National Parks concert!  My kids have gone to Camp Kesem since 2010, the year I was going through treatment the first time. Kesem has had such a huge impact on our kids.  They have a fun, happy place they can go every summer where they can connect with other kids who understand what they're going through.  They've made life long friends, and so have we-with parents of the kids that go to camp.

I've been thinking about a conversation I had with one of those parents the day we picked up kids this year.  I told Ed how grateful I was that our kids get to go to Kesem year after year, "because you never know when your life can turn upside down and you're dealing with it again."  Little did I know that just 7 weeks later I'd be sitting in my own chemo recliner.  #cancersucks

The view from my recliner

I went to Huntsman at 8:30 this morning.  I walked in the door at home at 4:00.  It was a long day!  After getting the needle in the port, they drew blood to check my counts, make sure I could handle chemo today.  They were good.  THEN, they had to order the chemo from the pharmacy.  Apparently the drugs are mixed to the right proportions based on body weight.  Who knew!  More waiting!  Once the drugs came, the infusions started, one drug at a time.

I'll learn more about this, but apparently only one drug, the Taxol is actually "chemo".  The Taxol is what I'll do every Friday.  The other two are medications in liquid form.  They still have their side effects, like any medication, but maybe they won't be so hard on my body.  I'm having hot flashes tonight, that must be one of them.

Geri T. drove me to my appointment and stayed with me and talked for a few hours.  I was so grateful for that!  I had another friend, Marie, offer to leave work at lunch time and come sit with me and take me home.  Marie is one of my cancer buddies.  She's inspired me in many ways!

And these guys showed up this morning!  Sharla was one of my Christmas tree decorating buddies last winter at Temple Square.  She is a dear friend!  Her daughter was diagnosed with cancer about a year ago, and while Kenzie lives in California, she's done her surgeries at Huntsman.  Kenzie had lung surgery this morning.  Her husband Kevin is photo bombing us.  Great people!

I took a nausea pill in the car on the way home.  I don't remember having a lot of nausea when I did Taxol last time, but just wanted to take it as a precaution.  And as luck would have it, I feel good tonight!

The Oxymoron

A lot of people assume that before you get cancer, or you discover it a second time, that you must feel sick somehow.  That's the crazy thing, you don't feel sick - at least not with mine.  You just find a lump on a random day, and then your life turns upside down!  Looking back, there was one clue something was going on, but since I decided years ago that I wasn't going to spend my life worrying about it coming back, I just didn't.  So when it did--and it did in a big way--it's turned our lives upside down.

Tomorrow, I go in for my first chemo.  I'll go into it feeling fine and come out of it feeling nauseated and exhausted, "poisoned".  "Not sick" to "Sick."  Crazy, right?

I just have to be honest here, because it needs to be processed and dealt with just like everything else.  The hardest part for me is to think about what I might miss.  The milestones in our family--anniversaries, weddings, missions, graduations--you know, the big stuff.  I've always pictured getting old and going gray, being SO HAPPY to be a grandma.  I've always pictured us being like the Boes'.  They go on walks around our neighborhood nearly every day.  I want to be like Louise, who at the tender age of 92, still loves her flower garden and wants it to look nice.  I want to be like Paul, who passed away this week at 85.  He was SO HAPPY when we moved back to Bountiful.  I got a bear hug every time I saw him.  He stayed active until the very end.  I'll spend the day in my chemo recliner, and have to miss his funeral.  I want to be a cheerful old lady with a zest for people and life and gardens!  I haven't given up on my dreams, I'll never give up on my dreams.  I'm going to do everything I can to make my dreams come true.

The port, and other news

I haven't updated for a few days, because there hasn't been a lot to report!  Just the same roller coaster of emotions.  Sometimes I'm fine, and sometimes, I'm really NOT!  I spent about 7 hours at Huntsman yesterday, first for an echocardiogram.  Then I went to Radiology to wait, and wait some more to get my port.  My sister in law, Jeanne was with me.  I was so grateful for that!  She got through her book, and I WAITED!

My "Not Very Happy About How That Happened" Look

They couldn't get the IV started in my right arm.  "Too much scar tissue in my veins", they said.  I can only use my right arm because of the lymph nodes that were removed last time, so my left arm is off limits.  So they said they would do an ultrasound guided IV into the flesh of my upper right arm.  After about 10+ minutes of "fishing" and failed attempts, I lost it.  Just a few tears.  Apparently, the veins in my upper arm are as naughty as the ones in my wrist and elbow.  Finally, though, they got it and knocked me out and did the procedure.  "Conscious Sedation" is what it's called.  They monitor the vitals and pump up the drugs as needed.  By the time I got home, I was so emotionally spent.  I slept until a ridiculous hour this morning.

I remove dressings tomorrow

I spent a few hours doing landscaping at the house in Bountiful I help maintain.  It's amazing what pulling weeds and deadheading can do for my spirits!  I'm hoping to get my Farmington house done tomorrow.  Because Friday, the fun starts.  It's my last chance!

I sent Mat to the pharmacy last night to pick up one thing, but forgot to tell him that Kathy, my nurse called a couple of days ago to tell me she had called in the prescriptions I need to get started.  Lidocaine for my port (to numb the skin before I get there for a treatment) and three powerful nausea medications, because apparently, I'm going to need them.  I learned last time that you don't wait until you're nauseated to take medication.  You have to stay in front of it, to prevent it.

We did this Sunday afternoon, because when there's wind, you must fly kites!  The other kids are our neighbors.  Brooklyn let out all the string, all 600 feet of it!  You know, because that's the easy part.  Any guesses on who reeled it back in?