Mom is home

While mom was in the hospital, many days passed by.

What started out to be a weekend of fun, plans to see "Rock of Ages", abruptly turned into two weeks of rounds for our family.  More importantly, two weeks of pure Fight like hell days for mom.

What started out as super high blood sugar (diabetic ketoacidosis) turned into every nightmare you can imagine.  I cannot detail it exactly for her privacy, but it is safe to say that my mom is my true heroin.  She just never quits, never never never.

Our family had to be with her 24 hours a day 7 days a week while in the hospital.  I'm tired and joyous at the same time.  Thank God her sister came out when she did.  She is still here. God Bless her.

As mom rotated from one floor to the next to the next, my sister and I had birthdays.  The nation had a birthday.  Mom was fighting to tell her doctors to help her.  It was so scary to see her experience so many different problems, and not be able to communicate.  But with her will, our will and the prayers of many, she made it, by the grace of God.

She is home now and so so so so beyond thrilled and joyous to see out her living room window.  To walk in the sun.  To have her own food and sleep in her own home.  To watch the people walking by with their doggies and stollers.  To see the neighbors and see the children smile.

Most of all to see her family and feel our love.  She has some determination that comes from no place I know.  I have my cancer to deal with, and had my Lipodox yesterday............but overall it's just not that big of a deal. My mom is everything to me.

I remember one day a few weeks ago, I had knocked on her door.  "Come In" she would say with her boisterous voice, as she knew it was me.  I remember my glancing thought...."I wish I had recorded that".

She made this meal when my Aunt was out here in June, just a great spaghetti with peppers and all the good stuff.  I decided to freeze my portion of the left overs.  I just had to keep it.  My mom actually can't eat that kind of stuff, but my Aunt was returning home and my mom really wanted to cook up something good.  She sure did.

Now she is on a new road.  It will take a few weeks for her to get her strength back from this most recent ordeal.  I just pray that she accepts the help she is given.  Her independence is crucial to her survival.  That's mom.

As I recall the lonely halls at night in the hospital, arriving after work to relieve my sister or my Aunt, I would see other people all alone.  It was heartbreaking.  Especially on the critical care floors.  I'd walk by the same room day after day and see that no visitors were there, no extra voice to speak for them, no watchful eyes.

That is the truly scary part.  Hundreds of thousands of people are alone in the hospital, they live away from family, have no local support network or are from a nursing home and may have few family ties.

I can guarantee you that if we weren't there, my mom would not be faring so well.  We had to stay on top of everything.  Her specialists are so amazing, but it's the in-between people.  The change in shifts, change in floors, a constant new orientation to someone different who did not really understand the complexity of her medical condition.  They have too many people to help, can only take time for what is needed.

I know I was a pain in the butt, but it was necessary.  When someone you love is fighting for their life, you just do what you need to do.  That is all you can do.  I pray.  I want to thank all of those who prayed for mom and sent their warm wishes and positive healing thoughts.

It feels strange to be sitting here being able to take time to even type this out.  The past few weeks have been spent running back and forth to the hospital, coordinating shifts and my work and errands.  My poor kitty cat was so good......I think she knew.  She complained a little, but for the most part, did OK.

Now is time for healing and peace.  I continue to pray that my mom can find some time to do what heals her spirit, her art and just doing some fun things for what remains of our summer.  She loves her grand kids so so so so so so much and her family.  She is so bright and wants to be involved in important things.

She just needs a break to get some time to do these things while she is feeling good.  It's so hard in between doctor appointments etc.  It will happen.

We still need to take our sweet trip to Bainbridge Island, the one we won in KLGandHoda.

She just called to see how I am doing........yay.  I got to hear her voice.  I got to talk with her and my Aunt.  My day is better already

For today I am resting, will work tonight and hopefully visit mom tomorrow.  My sister has just done an incredible job of coordinating and running things.  She is the best sister ever.  My sweet Aunt is here, such a blessing.  A few nurses and nursing assistants really were so so so so so so good to mom, you really were.  Thank you for your tender care....especially Mario and Sean.  Thank you deeply to her specialists who really look out for her, you are wonderful.

I love you mom.  I love you mom.  I love you mom.

More well wishes and positive thoughts needed

Hi everyone,

This is just a simple note to you to let you know how mom is doing.  She is STILL in hospital.  We are trying so hard to get her stable, she is so complicated.  She had new and severe issues arise after she was admitted and we are dealing with all of that mess.

I can't go into details, just know anything you can do to send a prayer or a cheery thought her way would be welcomed with open arms.

We want our mom back.  I love you mom with all my heart.....................

PS.  I start my new chemotherapy treatments Monday the 16th.  It's breaking my heart because I won't be available to help for a few days.  I have been switched to Lipodox.  Just really need it to NOT knock me down.

Being lifted in spirit.

Love,
Denise

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