Saturday, September 24, 2016

Let me encourage you

Dear Friends,
It is officially fall!  The seasons are changing so rapidly.  Before you know it we will be in that crazy time of the year where we are celebrating Hanukkah, Christmas, Kwanzaa, and attending all sorts of parties and get togethers.  As people who live with a terminal illness, I know that these seasons can be difficult and beautiful.  I want to take a moment to encourage you.  With a bit more thought and planning these things can be amazing and wonderful for you, not something to dread and feel anxious about.  Many of us have feelings of nervousness when it comes to participating in anything that takes us beyond our daily routine.  With the kick off of candy grabbing children on halloween to the ball drop on New Year's eve, many of us feel pretty unsettled and exhausted.  It doesn't have to be this way.
First off let me apologize for getting you thinking of this in September!  Here is why.  By planning or talking about it in advance, you remove the stress, and perhaps even begin to look forward to these things.
Step one is to make a plan.  If you and your family are in charge of any of the holiday gatherings, I say make a plan and be willing to let go of the past.  By letting go of the past I mean, don't be so rigid with traditions.  Sometimes you just need to let a few of them go.  You may have been making a special food item from scratch your whole life just because that's the way grandma did it, but this could be the perfect time to let it go.  If you have to have the pumpkin cheesecake, maybe you need to pick it up from costco, and gift yourself back the hours of shopping and food prep you would have spent.  One of the greatest bits of advice I have ever been given is this.  Keep it simple stupid.  Just keep it simple.  Whatever your traditions are talk to your family and come up with a plan to make them more simple.  You may find out that your family hates that damned pumpkin cheesecake but they've been eating it all these years because they thought it was important to you.  
So step one was coming up with a plan and letting go.  Step two is talking to your family here is step three.  DELEGATE.  You don't have to do it all on your own.  Hubby can pick up the halloween candy.  You can buy the cheesecake or ditch having it altogether.  If you really have to have the turkey on thanksgiving, but the idea of cooking all day is overwhelming, you can have one of your children cook it this year. Or take advantage of the many stores that will let you pre-order a precooked turkey with the fixings.  My husband and daughter did this one year and had a really laid back holiday.  I also did this one year when my husband was on chemo and cooking smells bothered him so badly.  I got all the preorder stuff I could and then just went with canned crannies, and canned gravy ect.  No real cooking involved, just heat and eat.  Very little stress and it was so relaxing.  Guess what, the food tasted essentially the same as it would have had I made it from scratch.  It's not rocket science it's just turkey and stuffing folks!
Step four is the most important.  Rest.  That's right.  Just rest.  Let go of the responsibilities by delegating them and rest.  Go to bed early, sleep in, take naps.  Get rest every single place you can.  If you are away from home and you are tired, ask if there is a place you can excuse yourself to and rest.  People really do want to help you and take care of you.  So let them.  Let them serve you, let them help you, and take time for yourself.  I know it isn't in your nature to be on the receiving end of service, but if there was ever a time in your life to accept service, this time is it.  I know these tips and suggestions seem simplistic.  It may be difficult to put them into practice.  Share these thoughts and ideas with your partner and family and have a healthy open discussion so that you all can enjoy this holiday season.  I love you guys!
Thanks for stopping by,
Leslie

Tuesday, September 20, 2016

Knowing when it's time to seek counseling

Saturday, September 17, 2016

Pain, a living entity,post originally in 2011, But still totally relevant today

Oh Pain.... Living with you really sucks.  I wrote about you in 2011, and you haven't changed much.  I want the people who read my blog and view my vlogs, to know what you're really like.  So I am sharing this post again. The  more people  know about you, the harder it will be for you to hide!

Pain, like a living entity.

Two years or slightly more ago, I began to feel pain in my arm and hips.  I passed out in the driveway on the hottest day of the year.  I lost weight, and gained weight.  I went through reconstructive surgery and suffered a few infections that landed me in the hospital.  My oncologist discovered that I had high protein in my urine and checked me out for diabetes.  I was also checked out for lupus because it fit all my symptoms.  The aha test was negative and I didn't have diabetes so they sent me to a rhuematologist  who told me that I had fibromyalgia.  That didn't feel right.  In my heart I knew there was something else going on.  But since I see an oncologist every three months I figured if it was cancer they would have caught it.  I was suffering from pain, and the pain was causing fear.  Below I tell you how the dictionary defines pain.  Then I will tell you the was it really is.

This is the definition of pain as defined in the Merriam-Websters Dictionary:


Definition of PAIN

1
2
a : usu. localized physical suffering associated with bodily disorder (as a disease or an injury);also : a basic bodily sensation induced by a noxious stimulus, received by naked nerve endings, characterized by physical discomfort (as pricking, throbbing, or aching), and typically leading to evasive action b : acute mental or emotional distress or suffering : grief
3
plural : the throes of childbirth
4
plural : trouble, care, or effort taken to accomplish something <was at pains to reassure us>
5
: one that irks or annoys or is otherwise troublesome —often used in such phrases as pain in the neck
It is interesting to me that the first definition of pain is simply the word punishment.  When diagnosed with  a disease it isn't uncommon for person to wonder what they are being punished for.  I know life doesn't work like that.  I choose to see that this disease can in some way bless my family or others.  First it will allow me to act with grace as I live with it which will teach my children and my friends and extended family grace and maybe a little style. 
How do I define Pain?  Picture this.  Pain is an actual force, a physical presence.     In my minds eye pain is an old sinister man who has ragged scars and sores all over his being.  He sits next to me where ever I go.  He whispers the most hateful things.  He tells me that my arm and hips will throb, and he tells to me to sit down and give up.  He utters hopeless words like "suffer!'  And when I do suffer he smiles, although it looks more like a snarl when he does it.  When I tell him that I refuse to suffer, and I take a pain pill or choose to do busy work to distract me from the pain, in my minds eye, he rolls into a ball and begins to rock back and forth.  He chants, "no, no, you need to give up and give in to this feeling"  I remind him that feelings change from moment to moment and tell him that as soon as I get busy doing something or if the pain is really bad take a pain pill, that the "feeling" will pass.  He cries when he hears that.  Pain doesn't like being told that he is temporary or that I have the power to change him into something else.  He really Hates being told that I can turn him into busy work that will produce results.  It truly bothers him that when he is at his worst I can take a pill and make him go away.  Poor pain, I almost feel sorry for him.  It is sad for him that I am winning this war that he wages.  Today, He set an all out assault on my arm, hips and ribs.  As I scrubbed counters, did laundry and made a list of the errands that I was going to run, I know I saw a tear drip from his eye.  He asked if he could come with me on my errands, but the pain pill was taking effect and I had to tell him NO.  It brings a smile to my face to see him disappear.  Then I remember that the first definition of pain is punishment and he has definitely been punished.  He picked the wrong woman to try and bring a life of pain.  
I win!! 

Friday, September 16, 2016

Update post thoracentisis, Ibrance cycle 15

Tuesday, September 13, 2016

Thoracentisis experience 2016

Thursday, September 1, 2016

Why We Haven't Cured Cancer-Just in case you wondered

Wednesday, August 31, 2016

Update -results of my ct scan and arm ultra sound