Friday, March 30, 2012

Pathology and other little Funnies

Yesterday I had my latest little bump removed.  It was quite small on the side of my left breast.  I found it because I had an itch...and I scratched it. :)  Thank God I had that itch.  The surgery was quite simple and easy...a lump removed..in at 7 am home by noon...a little black n blue.. another battle scar in the war.  I have scars everywhere now...on my body and some in my brain :).

Remembering that I have had cancer now on and off for almost 11 years...other folks doing this for the first time would be crazy right now...and rightly so...however I am a hardened fighter and for me this is just another bump in a very long road.

Pathology....if it is sarcoma..that's fine...been there done that..no surprises..just prayers for a very long break...if by some chance it was actually breast cancer...a second primary cancer...well that would just really suck and for the first time in awhile...I would be nervous...very nervous...and if by some strange fabulous chance it was just a cyst...well...I would just have to scream with joy from the rafters...what are rafters?   I have no idea however it sounded good :).

So I carry on...I am doing so well right now that it is scary....I came home from surgery yesterday and took a nap.  I never ever nap so I am not used to it.  I woke up at 5:30 at night thinking it was 5:30 in the morning...by the time I figured out the proper time I could not stop laughing.  Oh my...I am in my 50's!

Do not wait until you have an itch...do all your regular exams on time...what if you did not scratch?

Tuesday, March 27, 2012

Patient Advocates

There is a new career path developing out there...It is generally called a "patient advocate".  These people are very much needed.  Some of these folks deal with the mind boggling issue of medical paperwork.  They will organize you hospital and insurance paperwork and help you work through the maze of issues.  They will save you money on bills and deal with all the crazy people at the insurance companies that have no clue what the real rules are.

And some patient advocates deal with just the mental issues of long term disease.  Both areas of this field are highly not regulated at the moment and fees for these folks can be quite large.  Make sure you thoroughly check the experience and back ground of the person you decide to work with.  What if any types of licenses do they have?   How long have they been in business?  How many people have they helped so far?  Do they carry liability insurance?  Are they incorporated?   Do they have a free standing office or work out of their home?  What professional organizations do they belong to?   Fees also vary greatly.  Why do they charge their particular fees?....Be pro active for yourself because you will be sharing with them your most private information....your health records!

Wednesday, March 21, 2012

Your Knees

Cancer as many other issues ...can bring you to your knees...it will make you crawl, scream, and just wail until you are so exhausted......and then slowly...you surrender..and then you pick yourself up... and up and before you know it....cancer may still be there in some way...many ways...but you are moving on and on....and you are smiling...and laughing..

You fake it until you make it...you keep going as best that you can...because you can ...and this another day...and you get to live it.

Sunday, March 18, 2012

Be a Coin...Flip Over... Not Out!

Gut reactions in bad news and grief are so normal.  You cry...you are scared...you are beside yourself...you are on the dark side.

You must in all honesty get back to the light...however that is for you....whether you have to "fake it until you make it"...whatever you need to do...go racing on you bike :)..scream in your car with the windows rolled up until you go from crying to laughing (I have done this) ...you must.

Seek support from fabulous people that lift you up...not stupid people that bring you down....you must do this for several reasons...

1.  Cancer becomes one of your jobs.  You must advocate for yourself as I have said many, many times.  If you can not do it for yourself...find someone that can.

2.  You must always remember who you are and were before cancer...BC...you are still that person and you must love yourself in the wake of those running away from you,  and being able to accept those new fabulous people running towards you ...we are running towards you.  We want to help you.

3.  You are not dying...Yes ...you have some miserable times ahead...no getting around that..not at all...however you may just get through all of it and be here a long, long, time.  Do not think you are leaving so fast...because you don't know :).

Gather your strength...whether it be from your God...your friends, family...support group...conga drumming class, yoga, wherever.....dust yourself off...watch funny movies and stay on the "Heads Up " side of that coin and move forward.  Lots of love today.  I am writing this for you :).

Friday, March 16, 2012

Closure

There is no such thing as closure. There is moving on and creating new things in your life.  There is laughter, and joy.  There is meeting new people and going new places.  But you never forget and thoughts waiver in and out of your mind ....sometimes like a hurricane...crashing in and overwhelming you...sometimes like a small short wave that sneaks up on you and then slides away....and sometimes one long continuous stream that seems never ending...until you are distracted and it flows away.

We are sometimes haunted by extreme joy and sadness... by those precious memories. There is no full closure and I am glad for those memories....most of the time.

Lovers, Friends, Family, and Strangers

Good Morning.  I have had so many new people come into my life lately in a great way... one important person walk out in a not so great way.  In long term survivorship cancer can be a catalyst for so many new avenues both good and bad.  The wonderful surprises are bigger as well as stunning disappointments.

I hear all the time of friends and family totally ignoring a newly diagnosed person.  They say, "Call me if you need me"....seriously????  May I suggest that you call that person and ask, "what do you need?...what can I do for you etc...It makes the patient feel abandoned, and maybe even dead... even if they are on the road to recovery.  Then the anger comes...then the sadness...and then the feelings of being alone...even in a crowded room.  All cancer patients have these feelings. Do not leave a loved one like that.

What do you do as the patient?  You keep moving forward.  You may be surprised to see people run to you...complete strangers....go to support groups...seek therapy...allow new hobbies, people and events to charge back into your life.  You still are that person BC...before cancer.  I began conga drumming.  I took Tai Chi classes.  I wrote...I laughed...I said good bye to those who could not help and welcomed others that could.  I know it is hard to ask for help...you must. You can.  Some folks love to help.  You may just re invent yourself.

Long Term Disease is a bit different I think.  Some folks just get tired of helping...you live for so many years...they think you not feeling well from time to time...is just who you are now.  They forget that you are still fun...still want to party...work....they run slowly until you just do not hear from them anymore...God forbid they will be at your funeral...to say good bye.

Then there might be a real loved one that comes along one day and for whatever reason...just says good bye.  It was probably coming for awhile however there was no hint and the shock is overwhelming.  You are stopped dead in your tracks.  That can happen too.

Long term cancer patients have all kinds of issues....I never consider myself a cancer patient...I am a person with (none lately) cancer...big difference.  So my people out there... know that you are still who you are...if you are healthy enough or not...do something new everyday...meet new people..remember who you are BC...Re invent yourself...Many folks like me have passed away in these almost 11 years of doing this...

I honor them by moving forward everyday and continuing my life as best that I can.  Join me me in honoring those that have past and keep going as best that you can :)...love...and health.  You are still fabulous...you are more so.




Wednesday, March 14, 2012

Anatomy of Your Health Insurance

I am in a writing mood today :).   You work for a company and you have  a group health plan.  You get sick.  You stay sick to the point that you can not work.  You may not loose your job...or you do...depends on your job..You loose your regular health insurance coverage.  However you then go on cobra which gives you 18 months of coverage at triple the cost of your old insurance......and you have medical bills anyway...and you have lost your income.

You still are sick and can not work...18 months goes by and you now loose your cobra...and have no health insurance...and you can not work long enough to get it back...what do you have after this?  Nothing...no coverage...nada.

You can't sign up for an independent plan because you have to be healthy to get through underwriting. In order to get any help from anywhere you must spend down all of your funds until you have nothing..

So this is our fabulous health insurance system.  We designed it to be employer based which is wrong.  Our employers can not afford to cover us properly in small business.  We have given all of the power to health insurance companies with powerful lobbyists to keep us exactly where we are.....

I am not sure what the exact answer is as socialized medicine may prevent ill people from qualifying for new treatments due to cost...and the structure of the system...

However things must change and they will not change if you do not speak up.  All American citizens deserve good medical insurance.  You deserve care and it should not be connected to the performance of your job and/or your employer.  What do you think?  Tomorrow some other life issues of long term survivors...

Survivorship / Part 1

As medicine becomes more and more advanced and we live longer and longer we must as healthcare, financial,  and legal professionals address the needs of long term Survivorship.  This is just not just true in cancer, but in all long term medical issues.  We did not used to live so long when we were ill.

These very specific issues are a concern for patients and caregivers.  It is also a huge issue for employers and the government no matter which party that you support. :)

The most important person here to begin is the patient. I consider my self somewhat of an advocate.  I have had no formal training however surviving 11 surgeries, many chemos, radiation, and a lot of crazy stuff, I have learned a lot and managed to continue without loosing my mind.  On those occasions when I thought I might, I managed to create a great support network of people to help bring me back....and a lot of Conga drumming :)

I have been fortunate enough to be physically fit through most of this time.  So blessed I have been to even be able to speak in front of over 400 people completely bald..:My daughters always told me that I had a nice head ..lol...

So tomorrow I am going to begin by discussing why our current health insurance system really sucks...and why so many people choose to be uninsured...and how many people become uninsured with no choices ...and why illness in this fabulous country has people loosing all of their money, homes, and life.  Tomorrow is all about health insurance and Survivorship  ...and why things need to change.  The following blog entry will discuss why our candidates hands are tied in many ways when it comes to radical change in our healthcare system.  Your opinions are always welcome!

I apologize for not having the radio show up and running yet...I am organizing a few things at the moment and it's just crazy!

Tuesday, March 6, 2012

Scars of Time and Wisdom

How many scars do you have?  I have many.  The physical ones I can see everywhere.  I am so happy to have them only because it means that I am still here....after 11 years of fighting that I am still here and going strong.  I guess I earned those scars.  Some of them bring back painful memories.  Others actually make me laugh and thank all Gods. :).  I hope I have no new scars for awhile.

The mental and emotional scars of course we can not see...however we deeply feel them....some times more than others....sometimes we are just numb...other times crazy...and other times just fine.  It takes practice to embrace the fabulous and disregard the haunting negative emotions of serious illness.  It is not about positive attitude. It is about mental exercising and the practice of being able to move forward...or sideways :) at any given moment...just not down....and if you go down...learning how to come back up :).  You must come back up.

I will continue to tell you that you never know what the future brings...in a moment, a minute, a second, you could go way up...They are just the scars of time passed and the wisdom that you have earned.... and the hope of that wisdom guiding us into the future in way that we can deal with it.

Thursday, March 1, 2012

Recover

I am getting my chest port removed next week.  I have had this one for 4 years or so.  It just does not work anymore.  I also have no visible signs of cancer right now.  This is truly a miracle.  I am so excited to get this port out and just go crazy in a good way ....I have this strange feeling that I am in for a bit of a great break from all of this.  I am going to get one big massage where I do not have to worry if someone massages my right side...no more port!!!  This was my second port....and I have also had a pic line.  I am not a fan of pic lines...having it inserted was very scary.  

If you are a long time reader here you know that I have been doing this for over 10 years and what a journey this has been.  I have many new things planned including the radio show...just getting a few more ducks in a row. :)

I do not look sick...I do not feel sick...I am so thankful and grateful for this "free" time.  You never know ....You never know...just when you think that you may not crawl out of the whole...you are like a rocket shooting into the sky.  The stars, the moon, and sun...so beautiful.