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

: punishment

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!! 

Update post thoracentisis, Ibrance cycle 15

Thoracentisis experience 2016

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

Update -results of my ct scan and arm ultra sound

Living with Mets Bc part 3- End of Life Planning

End of life planning

Planning for end of Life.

Hello friends,
Life is rough.  And  it can often be hard to talk about the rough things with the people you are closest to in life.  If you have mets or love someone who does, this is the one of the most important conversations you will have Here's the thing, everyone is going to die.  All of us!  The thing is, we know that we  are going to die, and we also know what will most likely be the cause.  Talking about your exit from this world is something you should discuss with your partner at the moment you have determined you are committed to each other.  This conversation should happen between the topics of how many kids you want to have and whether or not you are a dog of a cat person.  You should know how you both feel about death.  
The first step should be to meet with an estate planner.  If you have already done this, you are waaaaay ahead of the plan.  If not, stick around, there is a lot more to cover.  So, as I was saying, schedule an appointment with an estate planner.  They will walk you through the process of  making financial plans, funeral/burial/or cremation plans.  They will help you choose a guardian for your kids, your pets or any elderly people under your care.  
End of life plans are as varied as people are. It is the details that make them unique.  Some people want an all out funeral, with a burial and a memorial service.  Others want a cremation with, and others may just donate their bodies to research.  All of these options are just fine.  But remember your loved ones will want to memorialize you in some way. You should decide in advance how you want to be remembered.  Do you want it to be religious, in a bar, at a park.  Do you want a  wake, or a memorial gathering?  You are probably hoping that you will pass away peacefully in your sleep taking everyone by surprise.  But if you have mets you know it is coming.  Best  to prepare.  
There are more things to decide than where you want to be once you are gone.  It is important to know how you want to spend those final days.  As you decline in health, do you want to be at home with visiting home health care?  I have seen both ends of the spectrum.  My father in law passed away at home with hospice.  My sister passed away in CCU.  I myself have decided  that dying at home is not how I want to leave this world.  I would prefer that I have 24 hour a day health care, and that my family not be put in the roll of care giver as they are saying their goodbyes.  It is also important to know and share with your partner how you feel about life saving measures.  If you do not want life saving measures be sure to have your estate planner draw up a do not resuscitate order.  Also make sure your partner or a close friend or family member has power of attorney.  You should make sure that both documents (dnr, and power of attorney) are on record with your oncologist and your hospital or care facility. 
Make sure that your family and friends know who is allowed to be with you at the end.  When my sister died, there were people present who I know my sister did not want to be there.  It made it difficult, as it made her last moments a sort of spectacle.  So, be very clear with everyone who you want with you.  Your care team will make sure that people are kept out who are the not on your list of approved visitors.  
Do you want an obituary?  If you do, do you want someone close to you to write it, the newspaper, or yourself.  You might want your own words used.  Or you may not want an announcement at all.  Just know what you want and be clear about it.  Put it in writing.  
Finally, If you have possessions that you want to go to a specific person, make sure that it is clearly stated in your will.  Perhaps you don't want to do that.  You may want to make sure that you make a gift/memory with the person you are leaving your possession to while you are still here.  Even if that is the case, make sure it is in your will that while you were still alive you gave such and such to so and so that it will not be disputed at a future time.  The purpose of a will is to smooth things as much as possible for you and for the people you leave behind.  In addition, if you have recipes or traditions you want to pass down, put them in writing and share them with all your loved ones while you are still alive to share them.  People who are close to you will cherish these for a life time, and these recipes and traditions will span generations.  
I am positive that there are points that I didn't cover, so do  me a favor and put any thing I missed in the comments below.  I love to hear from you!
Thanks for stopping by, 
Be looking for a video on this topic on Wednesday.
Thumbs up this post, like, subscribe, follow and share,
Leslie