Purple Hair, Bloody Scars -- It Must Be Halloween

I can't decide if Halloween is fun -- or creepy.  It gives people a chance to be what they secretly would like to be -- which in some cases is pretty creepy.  Although it is not yet Halloween, we've had a week of fun activities from parties to haunted houses... it is just strange to see someone running around with a chain saw.

At our 1st Annual Wall Family Halloween party I got to sport my first "real do" since chemo, and then I wore it again to our Stake YM/YW Special Needs Halloween Carnival.  I'm not quite ready to wear my super short hair cut "out and about" but when I dye it purple and wear it as a part of a Halloween costume it looks pretty cool.

Thanks for Toph even though Dave was sick we enjoyed him anyway and Doug made a great Grandpa.  Yes -- they took home the grand prize.  Yummy food, donuts on a string, mummy contests and more.    

Last night Kenzi and a few of her friends were "creepy children" at a spook alley at the Bountiful High Halloween Dance -- and they loved their bloody scars and loved the chance to creep people out in the graveyard.

We have a cop and a robber. A nickel back (as opposed to Nickel Back) a quarter back, a buck-an-ear (ha ha ha), a pair of blue genes/jeans, an owl, super lighting man, Waldo, green grapes, purple grapes, black-eyed pears, a turkey, Hester Prynne, Grandpa IVon and Uncle Dave.

The Black-Eyed Peas

Vance Cook -- great sport who let me dye his hair purple too!

Even Lyla loved the donut eating contest.

Lorie, Karen and Gavin as mummies.

Terri's super cute mummies.

Toph as Dave -- creepy how much he looked and acted like him.

Funny how much he looked at acted like him.

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Clinical Trial -- Round 1 -- So far, pretty good

I had my first round of the clinical trial drug -- Xyotax 2 weeks ago today and went for my Nadir check-up and blood test this morning.

Results:

1.  I love the fact that the Xyotax itself only took 15 minutes to administer vs. 3 hours Taxol used to take.  Still have to take a few pre-drugs, and I hate the steroid high for a few days after, but not too bad.

2.  I love the fact that so far my hair isn't falling out.  In the past 14 days after a treatment my hair would fall out.  This morning I pulled and pulled and pulled on my ever growing head of hair and nothing came out.  Keeping my fingers crossed.

3.  Nausea and fatigue -- still here, but not as bad.  My first rounds of chemo hit me hard day 3-10.  Although I was able to be up and around, I spent a good chunk of that time in bed and resting.  I have been tired and I have been nauseated, but nothing to keep me in bed.   Most days I've taken a short nap, but not everyday and not anything like I used to.  Although by the time I hit the bed at night, I am wasted and ache all over.

And I've been able to keep eating my "new and improved eating plan" despite the nausea.  Lisa and I are discovering new green smoothie combinations every day and generally have at least one conversation about a new oil or seed or veggie we need to add, and my kids seems to be getting used to and eating more of the veggies I'm surrounding them with.  And believe it or not, no or very little sugar is not too bad.  I did partake of a Becky Murri oatmeal chocolate chip cookie at a meeting, and had a couple bites of a cinnamon sugar bagel, but I'm surprised at how well I'm doing cutting out most sugar.

4.  Nueropathy and Feet problems.  Unfortunately I had very little of this before and it seems to be a bit of a problem now.  Tingling, numbness, swelling and pain.  Don't want to complain, but not sure I'll be able to do the full dosage for the entire 12 rounds.

5. Platelets and Red Blood seemed to have held up, but my white count is hammered.  Super low and have to be careful of infections.  Surprisingly though so far I have not been hit with Lauren's sore throat and cold she had last week, or the stomach flu she had Monday.  Maybe I'm just used to her germs.

6.  Exercise.  Although I can feel the affects of chemo vs. the 7 weeks when I hadn't had any chemo, I have been able to exercise.  I've been walking, going to the gym, lifting weights (well really light weights) and have gone on a couple of bike rides.

Overall I shouldn't complain, but I do anyway!  Just pray this stuff is doing my body some good -- trying to have faith that I did the right thing and am going to enjoy a long slow dance with NED.

What makes me the happiest?

There are lots of things that make me happy -- I won't use this post to list them all.  But I think one of the most fulfilling things in my life is watching my kids be happy, and watching them succeed -- especially if there is a little adversity involved.

We were discussing plays, musicals, sports, etc. the other night and one of the kids asked Dave what he likes to watch.  His answer "My favorite thing to watch is whatever activity my kids are participating in."  So very true for me too.

Last Saturday Cam had  "Pick for 6" in his flag football game.  He was soooo excited.  Just watching his face as he ran over to the sidelines was priceless -- listening  him tell Dave about it after was even better.

Kenzi did some recording tryouts for some choir things last week.  Listening to her angel voice is the most relaxing, peaceful thing for me.

And as of last night, Lauren and the Bountiful Braves are going to the State playoffs.  They were the underdogs and there defense had been kind of "slammed" in some of the pre-game stuff.  So to watch them win, and dominate, was so exciting!

What made it even better for me was Lauren.  Sunday night she started barfing and threw up about 10 times on Monday.  Monday evening she had a fever and ached all over.  Dave kept telling her about Michael Jordan and how he defeated the Jazz with the stomach flu.  He kept giving her pep talks and told her regardless of how she felt she needed to go out and play and help her team.   Tuesday morning her fever was gone and she was no longer throwing up, but she had a headache and didn't feel good.  But she went to school, she played soccer and she was awesome.  She and the other defenders almost completely shut down the "amazingly fast" Skyline defenders.

I love that she worked so hard all summer and it payed off.  I love that she has worked so hard all fall, has been trying to eat healthy and despite a super busy schedule has done well in school.    I love that she had the flu, that she fought through it and found success.  I know it won't always work out that way, but for today I am so grateful!!

So Friday night at Rio Tinto, watching Jana and Lauren do their best, you'll find one happy mom/aunt!!!

Some thoughts on hair... I don't mind not having it, but don't love being bald

If you could see me now (well maybe not right now since it is 2:32 am and I am in my PJs... wonder if I will ever sleep through the night again) you'd be amazed at how much hair I have.   And my eyebrows.  Wow!  They are coming back in super thick and fast.

Although I'm not loving the color or texture (it feels so chemically and icky), it is super fun to watch it grow back and start to imagine what kind of hairstyle I might have in a few months.  Dave thinks I should stop wearing hats now -- kids not quite so ready for that.

I have to admit, I really don't mind not having hair.  I can get ready to go anywhere in 2 minutes.  I really do like the look of scarfs and hats.  The wind and a nice breeze feels really cool on my bare head.

I just don't like the attention that being "a bald woman" brings.

Everyone has problems.  Everyone has trials.  Lots of people are struggling.  Unfortunately or fortunately for most people we don't know what that trial or struggle is.  As I walk through the grocery store I don't know immediately that the person walking toward me is going through a divorce, or the guy next to me just lost his job, or that the little girl has diabetes.  But everyone knows I have cancer.  (Well everyone but some of Kenzi's friends apparently.  She told me today one of her friends asked her at school why I always wear scarfs.)

Oddly enough the place I feel like I stand out the most is the temple.  I've been going with my dad every week since school started and I'm the only woman I've ever seen wear a turbin/scarf in the temple.  Maybe I've seen it before and just never noticed, but I sure attract attention there.  I'm already super emotional when I go there now, the spirit is so strong and almost overwhelming sometimes.

I know people don't have any unkind intentions with all of the stares at the temple or any place else.  And I hope it doesn't sound like I'm complaining.  I realize I couldn't have gotten a wig and avoided the very public side of cancer.  It is just that I get lots of double takes.  Lots of sweet smiles.  Lots of sympathy glances.   I can't wait to be the person that blends in again.

When I was at the temple a few weeks ago there was a blind man and a handsome young man in a wheel chair in my session.  As I watched them I realized that in a few months I will no longer be the person that everyone knows has cancer, but that these other two people will always have a very public trial.

Makenzie has said to me several times that me being sick -- and especially being bald -- has made her more aware of people that are different "on the outside" and have more empathy for them.

I hope that I have learned this as well.  I hope I am more accepting and aware.

And as I think about it -- I guess I can also be grateful for the "public ness" of this particular trial.  Many times aches and pains are so personal and private that no one has any idea of what you are facing and I have certainly not had to go through this trial alone.  So I guess I really am grateful for being bald and for all of the love and kindness people have shown me because of it.

Love Dr. Z!! One of my blessings.

Read an article this morning about the most important treatment for Ovarian Cancer is the radical surgery (debulking).  This gives me great hope.  I feel like I was in the hands of an amazing Dr. Zempolich.

Due to complications my chemo didn't go all that great ... and it has been very hard for me to know that.  But when I read articles like this I am feel hopeful.

When I was first diagnosed and my sweet Dr. Brown pulled Dr. Zempolich out of surgery to talk to her and set up an appointment for me, I felt like I was in great hands.  I know it was a little tender mercy I got into Dr. Brown that day, and I felt like I had been led to Dr. Z.  

As I talked to people and found out more about her this was just confirmed.  She is one of the best of the best and has amazing people skills and is so very kind to her patients.  Just what I need!

At her clinic they do outreach for small communities that don't have surgical gynecological oncologists to do the Ovarian Cancer surgery -- she goes to Idaho once a month to treat patients there.

So for today I am reminded of the huge blessing I had that started this whole (icky, but full of blessings too) journey.

Clinical Trial -- Mixed Emotions

Clinical Trial:  After chemo ended during my Nadir visit (10 days after chemo) my Dr. told me about a clinical trial for maintenance chemo I qualify for -- my reaction... burst into tears.  I really, really wanted to be done.  I wanted her to walk in and tell me I was clean, I'd never need chemo again and do go enjoy my life.

Unfortunately with most cancers, that conversation will never happen.

Reality of Stage 3 & Stage 4 Ovarian Cancer is that 70% of women will have a recurrence and although a recurrence is by no way a "death sentence" once you start having recurrences the higher likelihood cancer will beat you sooner than later.  (My thoughts on stats a little later.)  The trial is to see if maintenance drugs when you are in remission can delay or prevent recurrences, improve survival outcomes and their effectiveness vs. the drawback of feeling icky for another year.

In the trial I could get (1) nothing which is standard protocol once I am NED after chemo (2) low dose taxol 1x per month for 12 months which is one of the drugs I was on and causes hair loss and white blood/platelett issues and takes 3 hrs to administer and (3) a new drug from the taxene family but knows not to kill some of the good cells so it doesn't have all of the side affects and takes about 20 minutes to administer.   Both drugs cause fatigue, nausea and hand/foot swelling nerve issues, but the new drug doesn't tend to have the hair loss, blood issues and severe nueropathy

My 1st reaction was no way -- I don't want any more chemo.  My 2nd reaction was yes, yes -- I need to do something to keep this cancer away.  My 3rd reaction was I have no idea what to do.

So I talked to people, research, fasted and prayed and prayed some more and talked to more people.  After talking with my other oncologist Dr. Z (who I love) I started feeling like I should at least enroll.

Ultimately after much discussion with Dave -- who by the way I think should have made the decision because he is affected by my outcomes more than I am -- I went to the temple again and made my decision and that is to turn it over to Heavenly Father.  If I don't enroll I have made the decision.  If I enroll I can turn it over to Heavenly Father and put it in His hands.  So I did -- knowing I have a 33% chance at each.   This way I can't ever look back and wonder what if.

After having a ct scan, ekg, chest xray and full blood work I was accepted in the trial.  Again, enrolling was a bit emotional.  As they read all the "legal stuff" to me I had another out of body experience, one of many I've had this year, when it can't really be me -- can't be my life we are sitting here talking about.

I found out this week I was randomized to the new drug.  When they called me I was relieved.  Although when I prayed I told Heavenly Father I would trust in whatever I got, and wouldn't read too much into anything -- I secretly really hoped I wouldn't get Taxol -- really hoped I wouldn't get put on anything, but if I didn't get on a drug I know my personality and would probably have really regretted that if it every comes back.

I am just starting to feel so good -- lifting weights at the gym, not taking a nap every day, not having achy joints all night long, so I pray the new drug will be gentle on me but kill of anything left in my bloodstream that might bring this nasty stuff back again.

If the drug gets in I will start chemo again this week.  Good news is I'll be seen and checked a lot so I won't have to be worrying and wondering how I am doing -- every 2 weeks I'll have a pretty good idea from blood work exactly how I am doing.

So here is to the last Sunday for a year that I will probably feel this good and as I said here is to praying it does its job in a more gentle way.

On a good note -- I'm loving my new eating plan and feel like a lot of my feeling good has to do with that.  I plan to keep doing it and hope that it will help me get through the next year.

I Shaved my Legs!!

It has been almost 6 weeks since my last chemo -- and you should see me now.

I have 1/2 eyebrows, little tiny eyelashes, and I actually had to shave my legs tonight.  Sure signs that my good cells are regenerating.

My hair gets thicker every day -- I swear if I sat in the mirror and watched for a few hours I would be able to see it grow.  (I used to think that with my kids, especially Cameron.  If I could just watch him all night in his crib I would actually be able to watch him grow.)

Color and texture of my hair is still to be determined.

Dave thinks it is long enough now to quit wearing hats and scarfs, he says I look very European right now.  (But then again he always said I looked really good bald and thought I should have gone out in public bald.)

I think for a while once it grows out a little more I'm going to keep it short, short and may even dye it platinum blonde... just because I can!

"But mom you don't have to shave your legs" was Kenzi's way of trying to keep me positive when I wasn't feeling very pretty.

Now I can say to her "Kenzi I GET to shave my legs!"

Amazing how you learn to appreciate things.

Dancing with NED!!

In the cancer world NED means "No Evidence of Disease."

As of yesterday I am officially NED!!!!!

Yesterday I had my first CT Scan since chemo ended and it looked clean -- no sign of any tumors.  My CA 125 was 7 -- normal is anything under 35.  (I started out at 800.)

Unfortunately with Ovarian, and many other cancers, they will never say I am cured or there is evidence of no disease.

But for now NED is the best I can ask for.  Depending on what happens with my clinical trial I will have blood tested and Dr. visits every couple of months for the next year.  I know from talking to others the anxiety of being tested and waiting for results is not going to be easy.

I have to just forget the statistics.  I have to be careful about what I read.  I just need to live a happy, healthy and fulfilling life.

I met a lady with was given 1% chance of surviving and it has been 10 years.  She has lived to see the birth of several grand kids.  I met another lady who was told she had a 90-95% chance of her cancer never coming back and unfortunately a few years later it is back in another spot and she is fighting again.

I hate Dave's "you could get hit by a bus tomorrow" analogy -- but it is true.  Before cancer I never knew from day to day if I would live or die -- but I never thought twice about it.  Now I think about it at least twice a day.

But for now as my cancer friends say "I am dancing with NED."  If I were dancing with Tim, Matt or Kevin, Dave might not be too happy, but NED -- Dave is ok with that.

Kenzi's Mom looks a lot like a pirate!!!

I dropped Kenzi and Cameron off to one of Kenzi's friends to go swimming.  Her friend's little 5 year old cousin was there as well.  I chatted with the mom and left.

Later Kenzi shared the following conversation.  Love the sincerity, honesty and kindness of children.

Cousin: Kenzi's mom looks a lot like a pirate!
Friend:  Oh her mom has cancer and has to take medication that makes her sick and her hair fall out.
Cousin:  Oh... we shouldn't tease her then.  We should be nice to her!

Bethany and Alex -- I Love Family Weddings

August 3rd -- Congrats Bethany and Alex.  What a wonderful and perfect day.  Beautiful ceremony, super fun lunch, and perfect reception.  Cotton Candy, popcorn, hot dogs and snow cones -- everyone stayed and stayed and stayed.  Dancing with Dave and the kids and the cousins and enjoying the backyard after everyone's hard work all summer.  (Lauren even learned to use power tools in building a planter box and knows how to fix sprinklers now too!!!)

Thanks Bethany for always being such a great example to us and welcome to the family Alex.

Desperately Clinging to the Last Days of Summer....

About the middle to the end of August I started feeling good -- with school starting soon I took it upon myself to pack a whole lot of summer into just a few weeks.  

• Get Air -- seriously have never seen Kenzi and Cams faces so red.
• Summer Incentive Reward Day at Snowbird (Cameron you are much braver than I thought and Kenzi and Lauren were quite the bull riders and for me -- who thought I'd ever be able to ride the Alpine Slide again.)
• Sweets Candy Factory Tour
• Cherry Hill
• Sleeping in the Backyard on the old mattress before taking it to the dump (Lauren don't know how you sleep with Zoe every night -- she moves, she snores and she stinks!!!)
• Fire pits and night games.

A great last few weeks of summer!!!

Brigham City Temp Open House & Peaches....

The kids and I (during our last gasp of summer marathon week) took a day trip tour of the Brigham City temple.  It is so very beautiful!  Loved all of the peach blossoms and the beautiful paintings.  After we enjoyed Idle Isles candy, Brigham City peaches and the Maddox. 

House Dave spent a few years living at in Brigham City.