Update on Quilts Delivery and Hope From Sandy

I delivered the quilts Sandy donated to give hope and relief to oncology patients to my friend Penne.  Penne is getting ready to head out for oncology classes in Kansas and the three facilities she works with there.  I also delivered her a box of hats, prayer shawls and two boxes of magazines.

She was amazed at the work put into these masterpieces and three very special patients immediately came to her mind.

These patients are confined to their rooms and are struggling with various issues.  Alone much of the time I bet they wonder if they are forgotten.

Penne took Sandy’s quilts to these three ladies and here is her story of the delivery these gifts.

Paula-  My car is loaded with half the magazines and all of the knitted items- ready for a journey to Kansas this weekend.

Those quilts were absolutely beautiful!   So I just went up to the unit and the nurse manager and me delivered them to three oncology patients that I knew needed them.  The first is a 20 year old with a life-threatening lymphoma.  She picked the colorful one and kept saying over and over “thank you”!   She couldn’t believe that someone had taken all that time to make that for her.  The second is a lady in her 80s.  She loved the quilt and kept asking if she could keep it.  I told her that it was made just for her and that we couldn’t take it back.  She then asked if it would be on her bill.  I had put it on her bed and the room just lit up.   So did she.   She was so cute.   And very full of gratitude.    And the third lady is a woman in the last stages of ovarian cancer.  She is very weak, always cold and depressed.  Her eyes filled with tears.  The quilt totally brightened her room.  As weak as she was, she leaned up to hug me.  And she wanted to make sure that whoever made that for her knew how much she liked it.   The 20 year old got out of bed and came and hugged me as well.  Thank you so much for arranging all of this.   You do good work!  I know He is smiling on you!      P.

Sandy gave a lasting gift of hope and happiness.  The staff that care for these ladies also benefit.  Seeing how Sandy’s generous gift of time, talent and all the supplies to make her stunning works of art change patients lives must make their days brighter too.

The spirits of those three ladies and their caregivers have been forever touched by Sandy the Quilt Queen.

Hope From Sandy

When Sandy learned about the inpatient oncology treatments she decided to share her special talents.

These patients are confined to dreary rooms. They aren’t allowed any flowers or plants.

What could she do to bring some brightness and hope into their lives?

A talented quilter, she donated these three gorgeous quilts.

The backs of these masterpieces are just as amazing as the fronts!

The patients will take these quilts home with them when they leave the hospital. What a wonderful message they received from Sandy, an extreme quilter!

 

 

Delivery to Oncology Coordinator

There are some pretty serious cancer treatments out there.  Sometimes the patients require a hospital stay. This can be pretty devastating being stuck in a room for days on end and most times these patients are not even allowed flowers due to the seriousness of their condition and treatments.

Here is a delivery of blankets and shawls to cheer up the rooms.   The patient knows that somebody cared enough to take the time to knit or crochet them something special and they get to take their gift home with them at the end of their stay!

Knitting and Crocheting for Charity Delivery

A delivery to the oncology department.  We send hats, scarves, lap blankets or shawls.  These are given to the patients, care givers and nurses in the chemotherapy room.  They also are given to inpatient cancer patients to make their room a little more personal with a gift of a hand made little something.  They can look forward to taking their gift home at the end of their stay.

Note the blue and orange hat, GO BRONCOS!

And the cerveza box has magazines and books.

What did I manage to personally include?

A hand knitted lap blanket.

 

 

Redefined by Cancer

I was speaking to a long time friend about our recent cancer diagnosis-es.  We have known each other for about 20 years and both recently began our journeys as cancer survivors.

We both were struck how our lives had been redefined by cancer as we gabbed, catching up and discussing the latest about our conditions.

When we met 20 years ago neither of us knew the word metastasize or five year survival rate or waiting for the day you could say you were cancer free…   Neither of us knew the side effects of surgery to remove tumors, chemotherapy or radiation.  Now people ask us questions about these things and want our opinions.

I called my friend at the dinner hour.  20 years ago I would have said “I know its dinner time and you need to feed your family but I just wanted to say hi, lets talk soon.” or she would have said “I have to get dinner on the table, can we talk later?”

But we have been redefined.  Life is short.  Dinner can wait but friendships can’t.

LympheDivas Helping me cope with Lymphedema

Not a tattoo but a compression sleeve and glove to combat lymphedema.

Lymphedema was caused by damage from my cancer treatments.  I have to wrap my arm like this every night, applying compression to my arm to keep the accumulation of lymph fluid from swelling my arm into a scary huge mess:

Compression is 24-7.  During the day it is sleeves and gloves.  The sleeves and gloves suggested by my physical therapist are the same color and ugly as heck.  Note the seams on the fingers, makes typing a chore.

Discouraged I scoured the internet to find alternatives.  Ta-da!  LympheDivas, a comfortable and fun alternative.

Just working up the courage to wear one of these:

Lymphedema Treatment Act

Imagine you are told you have a condition that requires lifetime treatment.  The supplies you need are simple, some are expensive, but necessary to control your condition.  And then you find out your treatment supplies are consumed very quickly and must be replaced constantly.  And none of those supplies are covered by insurance.  And finally you realize if you don’t pay for all these supplies your condition will deteriorate and get worse.

There are many causes of lymphedema.  It touches people of all ages.

http://lymphedematreatmentact.org/

 

Lymphedema is Forever

 

You can’t cheat lymphedema.  It can affect a famous actress, different cancer survivors, the soldier who suffered a terrible trauma, a child with a genetic or inherited issue.  It’s with you forever. Don’t follow your treatment? Serious complications will follow.

I will need to wrap my arm like this every night for the rest of my life.

Some of the supplies I need every day, these are a just a portion and these  along with the rest are not covered by my insurance, there are much more not pictured here.  I spoke with my physical therapist about why some people let their lymphedema get out of control. Came to light that perhaps they could not afford all of the supplies.  Homeless?  Have to choose between your lymphedema supplies and paying your rent or mortgage or groceries?   The truth is my insurance pays for none of the supplies I need to keep my lymphedema under control!  They pay for a portion of one sleeve and glove each year that is my daytime therapy (I’ll need at least 2 or 3 each year minimum if I am really careful).  I am not alone, another lymphedema sufferer I know is in the same boat as I am. We both have jobs so we are not going to sink but that boat next to us is sinking.

I am getting my lymphedema under control and was just measured for my first sleeve and glove that I’ll wear during the day.   My insurance is not covering all of this and the supplier called me to make sure I knew my out-of-pocket was quite hefty and not part of my deductible and I was responsible for this uninsured portion.

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

March is Lymphedema Awareness Month

Lymphedema is a swelling caused by excess fluid.  Cancer patients can get lymphedema because lymph nodes are damaged or removed during surgery and damaged by radiation.  Lymphedema becomes uncomfortable and limits movement as it progresses.

Treatment?  The therapists through my current insurance are booked weeks out.  As lymphedema progresses it can cause tissue damage and other permanent damage.  Waiting weeks for some relief was not an option.  I increased the exercises for stimulating lymphatic system and added a manual lymphatic drainage (light self-massage) to reduce the swelling.  I was unaware of this simple technique until a friend told me about it.

The results?  Swelling reduced and movement almost back to normal.  Much more comfortable.  Since I was previously doing the exercises, I believe the light self-massage was the thing that reduced the swelling so dramatically.

At the preliminary therapy appointment I was told that my insurance did not provide any massage or self-massage techniques.  I was told that the self-massage probably did not help.  If I wanted to continue self-massage to go ahead because it probably didn’t hurt anything.

My first therapy appointment to learn how to do the compression bandaging designed to reduce swelling?  Two more weeks.

The interesting thing about this self-massage is the light touch used.  One therapist described it as pushing a dime across your skin.  It is just a suggestion to your tissues to wake up and get that fluid moving.  Anything more aggressive is a no-no!