Mom's work from long ago, prayers needed

When we were young as kids, my sister, brother and I remember mom spending many nights creating beautiful paintings.  This is the only photo we have of her work.  Somehow this horse painting disappeared after the divorce years and years ago.  I never want to see the heart that created this stunning representation of a Spaniard and horse to stop.

I am asking for prayers for mom. She had a heart attack last week and a series of other serious complications are keeping her in hospital, including an infection she acquired from her central line. She is in so much pain and just not herself at all.  She is suffering.  Please keep her in your thoughts and prayers.

I saw my gyn onc yesterday.  Had a follow up CT scan last week.  Well, the carboplatin isn't working as well as my gyn onc would like.  My tumors have grown slightly, one the same size and there's a new tiny one.  They are still all small, but a threat if they keep growing.  I have small amount of fluid around my heart and something strange going on with my lungs.  Atelectasis....where the tiny sacs collapse. I only have small area on both lower lobes, so that is good.  I feel like that partially explains my constant fatigue and decreased activity level.

My last carboplatin treatment caused me to get very short of breath, and sometimes even now I catch myself not breathing very deeply.  So my goal is to start doing deep breathing exercises while I transition to a new medication.  Basically carbo is not giving me enough benefit for all the suffering, and I agree to change out to a new chemo medication.

So I will start a medication similar to Doxil in a few weeks.  The program is 4 treatments, monthly.  My chemo brain has caused me to forget the name of the sister drug, but I think it's called Lipodox.  I honestly can't remember.

Well, it's not the best news, but it's not the worst news either.  The carboplatin did make some difference, and for that I am thankful.  I have been so fatigued and really need to exercise.  I have gained 10 pounds.

The good news is that this new chemo may have more manageable side effects and I won't have to go in hospital to receive treatment.  My gyn onc is so good.  She really wants the time that I am in treatment to be as functional and positive as possible.  I believe she has made a smart recommendation to change at this point in the game.

I need to be there for mom, and work and be as active as possible. We have to get her back on her feet..........

I just wanted to give you an update.  Thank you for your friendship, care and prayers.

Love,
Denise

4th Chemo kicking my behind

My mom with Kate, at the NBC Today Show.  Kate was our producer, so sweet.  My mom still beats down the doors of diabetes every day, and wins!

I painted this little fish when I was on chemo in 2010.  I just love the  blue.

As I sit here drenched because of the side effects I wonder why I don't look like a swimsuit model.  I just can't explain how ridiculously sick I have felt since last Monday.  Actually, yesterday was a good day and this morning I am faring "ok".  

My sister took me home from the hospital last Tuesday after another round of Carboplatin via a desensitization protocol, and I was thinking "I'm good". She bought me a soy vanilla latte ( I know, bad soy bad soy).  I can't remember much after she left, except to say that all week I was very short of breath.

All week I got drenched in sweats and would have bad nausea, be unable to breathe well, and just super tired.  I hardly drank a thing for three days, big NO NO.  I did the best I could. I took my meds like I was supposed to, oh well.  I am on the up side of the recovery now, whew.

Yesterday was the first day I had a cup of coffee.

My mom and aunt were so sweet to come over Thursday night because I couldn't function.  I was crying because I couldn't catch my breath.  It wasn't like I needed 911, it was just a knowingness that my body was having a hard time with the chemo.  Harder than last time.

Today I am so lucky that I feel well enough, I can go with my mom to her rehab and spend some precious time with my aunt.  

I only have two more chemotherapy treatments to go.  Strangely my CA125 marker is slightly rising.  Not sure what it means because my gyn onc stated that the marker is not reliable.  When my recurrence was diagnosed, it was 15.  15 is a dream number, a great number, if you are not in a recurrence.  So for me, 15 is not good.  It was 38 at the end of May.  I try not to obsess about numbers, but hmmmmmmmm.  

So today is a great new day.  I am thinking about some friends, one who's mom and brother are ill.  One who is having her hip replaced and another who will be having brain surgery in a few days.  

We just need to keep looking forward and doing the best we can.  I feel so so so blessed that I get to talk with my family every day, or send a little text, or look at a few photos.  And, I have this sweet little cat named Marilyn, who stays within 5 feet of me all day long.  How bad can this life be?

Love you all.........................

More on New York, it stays with you always

Mom on the way to New York City May 7, 2012

Our cabbie was a great driver

The NBC Today Show Studio crawl

Me with the producer and her camera ladies...yay

Kate in the middle with her camera ladies

Mom enjoying the 360 degree View Restaurant, what a spectacular way to see New York

In New York, everything is big and tall

A view from "The View"

More views

And another view

A view once more

Things sure look small down there

Times Square

Times Square

Our first look at the city, arriving late into the evening

Mom and I have yet to take our little get away on Bainbridge Island, but we will soon.  It's just been a whacky time since we got back.  It took forever for me to even find photos because I had lost my cell phone at JFK airport.  Luckily I got it back.  Mom had severely bruised her tail bone getting into a cab that Tuesday and we spent all of Wed handling that.

As it turns out, mom had the ride of her life on a pedi-cab the day before the show.  She was in awful pain and finally we decided to go into a clinic.  Kate was such a gem helping us out with all of this, but getting there was crazy.

In New York they say take a cab everywhere.  Seems harmless....NOT. You can't catch a cab on smaller side streets, you have to walk to a busy corner.  My poor mom, walking around with me trying to find a cab.  So after one cabbie refused to take us...seriously.....this wonderful Irishman with bright blue eyes came up to us in his little pedi-cab and asked if we needed a ride.

I have to tell ya, I was not real confident in that, as the day before I saw pedi-cab race across four lanes of heavy traffic practically tipping the whole thing over.  Mom was excited.  We explained that she was in tremendous pain and that we were on our way to an urgent care clinic.  He promised me that he would go slow and take good care of my mom.  So we got in and held on...weeeeeeeeeeeeeeeeeeeeeeeeeeeeeeee

Mom laughed and laughed and laughed and laughed and laughed.  She said that was exactly what she needed.  It was also a great way to see the city.  I have a small video clip of our ride...........

It was a trip of a lifetime and we will never forget it.  Thank you Kathie Lee Gifford, Hoda Kotb and Kate for hosting us.  Thank you to David Friedman, Chandra Lee Schwartz, Davy Wild, and of course Kathie Lee Gifford for creating such a beautiful song "Strong Like You" from me to my mom.

Here it is over a month has gone by.  I go into the hospital tomorrow for my 4th round of chemotherapy desensitization.  I went chemo shopping today for soups, veggies, yogurt, etc etc etc.  Of course I forgot my colace and flax seeds.  I just want it over with.  Not looking forward to almost 10 days of bad nausea.

I have been sleeping 12 hours per day for a long time.

Mom has been in hospital twice since the trip.  Geeze.  She can't catch a break but looked great today.  She is just a real trooper.  She is all excited because her sister is coming out to visit.

My sweet sister is finally up and around again, the whole family dealing with whooping cough.  Can you imagine?

Several of our teal sisters have passed away this past month, and that is really hard.  I pray for their families and hope that they can keep the conversation going.

Every day can be rich with life, the little joys and the small smiles that really warm your heart....that is what we need to look for each day.  Can't worry too much about what may or may not come.

I have a beautiful and loving family, a kitty cat that just gives me pure joy and I think she is happy too.  I have really nice friends and most of all I have God.  We all have Him there to love us and carry our pains.

I love you all......................Denise

Art doesn't fall far from the tree

My mom taught her well.  My sister is showing her works on Poppytalk Hand Made, as well as on her blog.  I always enjoy her work.  It makes me smile and brings me joy.

Those of us with chronic illnesses, no matter the name of it, deal with many of the same issues. Pain, disruption of life, lingering thoughts about how we have used our time up until now.  "Could I have done better?"  "If only I would have done this or not done that."  We have no answers, only God knows these things.

What I do know is that we need art and music and play and laughter to be part of our lives, in a big way.  It's healing to see beautiful art.  We go to distant lands or other places and either imagine wonderful things or remember experiences that made an impact.  Granted, we may not always feel "good" but art is about truth.  Truth is cleansing, and cleansing brings about peace with our selves, which can bring about peace with others.

I love you sis!  Good work!

Poppytalk: Affordable Art: weathered silo: One of our participants this month at Poppytalk Handmade is Mandy of weathered silo . As we feature affordable art this coming week, I'm ...

A song for mom. "Strong Like You", by Kathie Lee Gifford and David Friedman

http://video.today.msnbc.msn.com/today/47372225#47372225

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My mom and I had the most amazing experience on the Today Show.

She is such an inspiration to me.  I know she can be an inspiration to others.  We all have our challenges.

Kathie Lee Gifford and Hoda Kotb are so incredibly sweet, so thoughtful, so kind, so sincerely interested.  What an honor for mom and I to have had this chance. I watch the show all the time, it always makes me smile.  Being on the set gave me a permanent smile.  Love and hugs to Kathie Lee and Hoda, I sincerely care about you.  My mom told me she really felt that your sweetness, care and love.  I wish my mom was writing this in her words, but you know what I mean.

All the people on the set, hair, makeup were so courteous and happy and you can tell that the people at NBC love what they do. Bobby, thanks for the joy and for doing my hair.

On the set, you can feel the positive energy in the air.  You need something, all you have to do is ask.

For my essay to have been selected from the hundreds or however many are submitted is just a miracle.  Kathie Lee was so genuine in providing prayers to us and I could feel her spirit.  I just can't believe I was in Hoda and Kathie's presence, wow.

I wish I could write out all the laughter and joy that my mom is feeling right now.  The trip was a real challenge, because we both have some limitations and mom just pushed through everything like the trooper that she is.  I love the look on my mom's face right now, she is BEAMING!

Thank you Kathie Lee and David Friedman for creating such an incredibly beautiful and inspiring musical piece for my mom. WOW, that is truly amazing.  I posted on my FB page that I am truly humbled.  I feel like God has lifted us with this truly beautiful gift.  Chandra Lee Schwartz, your voice is so beautiful. Davy Wild, thank you for your keyboard talent.

Katherine Cook, you are incredible, thank you so much.  You are so responsive and talented, please give everyone a huge hug from me and mom.  Superhug to you!

I hope to find my cell phone because it has all our precious photos from the trip.  I was crying my eyes out on the way home.  I lost it somewhere between the security checkpoint and the gate at JFK.  I wish I had worn a camcorder on my head the whole time.  New York City is just indescribable, and we were overwhelmed.  I mean, what can I say.  You have to be there I guess to understand.  It's huge.....you almost fall over backwards looking up to the top of the skyline.

To my sister and aunt who helped with getting the photos and helping get us ready to go, a major huge hug and love to you.........what a whirlwind.

I pray I did not forget anyone.  There is so much more to tell..

This was a once in a life-time opportunity.   I love you mom!

Denise