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.

Lobster Fest -- Love you Walls!

Got back Sunday night of Labor Day weekend for a very last minute (had to wait and see how my numbers were from my Dr.) trip to visit Scott and his family in Washington and join them in their annual Labor Day Lobster Fest.  

Just the girls and Grandpa (Dave and Cam went to the cabin for a father/sons/cousin weekend).  Not sure what we enjoyed the most...

• Mt. St. Helens with Mandy and playing Tallyhoe
• "Helping" Scott mow his lawn with his tractor and watching him chase after dad who was driving too fast and too sloppy.
• Riding Jordan and Josh's little motorcycle.
• Helping get everything ready for the big party -- balloons, picking up 50 crabs and 50 lobsters (including dad's 4 1/2 pound one), making sushi (yes Kenzi and I are pros now).
• Eating, eating, eating lobster, crab, salmon, shrimp, sushi, prawns and lots of other yummy salads and treats with the 90 other people enjoying a gorgeous seafood filled day.
• Laughing around the post party fire.
• Swinging, hiking, soccer...
• Singing and getting a bit grossed out by "Midnight Special" videos -- especially with Rod Stewart and Blondie.
• Seeing the Columbia River and taking a tour of Kalama hot spots -- Twilight High School filming.
• Basketball and Elimination... wow I am out of shape.
• Just hanging out with some of my favorite people in the world!!!!

Love Janice's martial arts guys. 

Josh taking care of us in the great jeep.

High School where Twilight was filmed ... that's for you Misty.

Salmon fishing contest on the Columbia River -- tons of people catching huge salmon.

Relaxing fire after a crazy day.

Grandpas 4 1/2 pound lobster.

Mt. St. Helens