Wednesday, November 14, 2012

My Son, his associates... and I wrote a song....

http://soundcloud.com/veracity-studios/studering-dream

check it out !!!

GEtTING BACK TO BLOGGING

It has been a year since my diagnosis.... so sorry... I have had times of not feeling like talking... but I know I need to start talking... not just for myself... but for others who are diagnosed and need information....
....in brief.....
I recently wrote a testimonial letter for my surgeons....

I WILL ELABORATE MORE IN FUTURE POSTS... but I feel it is important for patients to know there might be more options and support avenues out there !!!
PART OF MY STORY... in brief....
(my testimonial to Dr C and Dr M !)

Dr Cassileth and Dr Memsic are two of the most wonderful women I have ever met. 
I wish I had known about them last year at this time... I was diagnosed with Breast Cancer a year ago in October of 2011. I was swept off to a lumpectomy with my health insurance company....  for what doctors thought was a “pea” sized tumor. Maybe my original doctors should have ordered an MRI to know what was actually in my “dense breasts” .. because when I woke from the lumpectomy surgery...I was told that it was worse than they thought...a six cm tumor with involved lymph nodes...  and that I would be sent back for a Mastectomy in the Spring of 2012 after chemo.... my doctors took three months to get me into Chemo, I was done with that April 19, 2012.... and was referred to Radiation. As it turned out, they thought I could just have chemo and Radiation ... and then would be sent in a few months for the Mastectomy... would heal for a year, then could go in for reconstructive surgery and expanders by 2013.....
During my last week of chemo, a friend told me about Dr Cassileth and that I should talk to her before getting Radiation because radiation can affect the skin, and maybe I should have the Mastectomy first. I was given the website for Dr Cassileth....  I was frantic because I was supposed to start Radiation soon.... and so I wrote a crazy long email to Dr Cassileth late on a Friday night ... and two days later  I received a call from Dr Lisa Cassileth. WOW.... I was in tears... she read my letter and took the time to call me... that fast... and she was totally understanding of my sense of urgency.... she then had her staff call me to arrange appointments with she and Dr Memsic.... and about two weeks later I had my Double Mastectomy with Immediate Reconstruction. These AMAZING doctors and staff at Dr Cassileth’s Office took fabulous care of me from the moment I met them. 
Consultations, decisions, photos, scheduling .... I was in for my surgery at 8am on a Wednesday... I woke at 12:40pm.... stood, then was sat in a wheel chair, taken to a car... and they transported me to the aftercare facility nearby. I spent Wednesday and Thursday night in aftercare ... was then released Friday morning, went by Dr C’s for a check-in... then went home. I was off pain meds in three days... and went grocery shopping two days later ! I am not one to sit around, but the Doctors told me I needed to take it easy and to heal properly ... I followed their instructions... and healed fabulously ! 
I came back weekly, to Dr’s Cassileth & Memsic... for the exquisite, kind and caring followups after surgery. I continued following their instructions and continued healing and loving my feelings of “normal” !.... As with anything... there have been adjustments.... but I feel like I have a lot of normalcy to my life that I may not have if I had not made this decision .... 
This year, this diagnosis... the thought that I would have to have multiple surgeries if I had gone with what my first doctors recommended.... lumpectomy, mastectomy, radiation, a year of healing, then more surgery for expanders, months of expanding ... then surgery to remove expanders and insert implants.... I KNEW I HAD TO CONSIDER MORE OPTIONS....... I KNEW I HAD TO CHECK THESE DOCTORS OUT... THEN I KNEW I WANTED TO HAVE MY SURGERY & RECONSTRUCTION at Dr Cassileth’s office !
I feel great .... everyone who has seen me from the day after surgery to the present... cannot believe that I had surgery. I credit this positive and fabulous experience to Dr Cassileth & Dr Memsic and the staff at this wonderful facility ! They took great care of me ... and their expertise has allowed me to have some normal back in my life much quicker and more efficiently than if I had settled for my previous doctors recommendations ! I love this office and these doctors ... and I love what Dr Cassileth and Dr Memsic did for me.... they gave me hope, they cared for me... and they helped me get some normal... back in my life ! 
Just think... if I hadn’t found them... if I hadn’t decided to go to them.... about now.... I would probably be getting scheduled for the mastectomies and would then be looking at healing until October 2013... and might then be ready for expander surgery in October of 2014.... have months of expanding.... then maybe expander removal with implant insertion around April of 2015.... and months of healing.... 
It is November of 2012.... and I already had my mastectomy surgery, had radiation, and I have boobs... and I’ve got that feeling of normal and well being.... Life is Good... 2012 ! 
Thank you Dr Cassileth and Dr Memsic.... you will always be special to me ! 
❤ Janet R.

Thursday, December 8, 2011

What's ahead

Gee, it seems to change daily... I am a bit overwhelmed...

I was diagnosed in September 2011... Had the biopsy In first week of October... Received the call on October 06,2011. After the biopsyy.... I became very sore and tender around my back and trapezius muscle areas.....

Went to surgeon, he felt no lymph involvement... But I was genuinely sore in several spots around the back of my arms. I asked to have surgery and reconstruction...so I was referred to a different hospital. I met a new surgeon, and  a plastic surgeon. My surgeon said he would like to save the breast. He felt no swollen lymph either. He convinced me that in view of the Mammogram films and by palpating my breast... he felt no tumor... and believed my tumor to be about the size of a pea.....

October 27, 2011, pre-op.... Surgery October 28, 2011.... When I woke, I was told that half of my breast had to be taken... Which is fine, I wish they had just taken it all (....by the way... That is what I had asked for to begin with...)... Anyway.... I was also told that 22 lymph nodes were taken... With 19 large, rubbery and with cancer.

I left the hospital with the drain hanging by my side... Which hung around for a month... My drainage would not lessen.... I finally made myself a sling to carry and keep my right arm immobile... So that I might heal enough to get drainage to subside... so I would be able to have the drain tube removed....

Within one week... The drainage was a sixth of what it was... And the surgeon removed it..... YAY !!!

The Cancer Treatment "business" that I was referred to was supposed to be "the BEST"... "most innovative"... "state of the art"... place around !!!

Where was the support, the director, the people that all of their advertisements spoke of??? They were not at my consultation....


I was scheduled with an oncologist at this "Premier" facility... 
I met him and left his office devastated, next to tears, feeling like I may as well go pick out a casket... a gorgeous urn ...

Anyway... He was rude, unhopeful, negative, and did not appreciate my hopefulness, my positive, my vigor, and my strength.

I ask... Why is a doctor like this even allowed at a facility that boasts of their fabulous treatment and support system....?
Are their advertisements false?
Are their advertisements just meant to get patients in... and then the patients are just so confused or devastated that they succumb and just go with the status quo???


So... I left this "Premier " facility... and I called my insurance provider... I was horribly shaken and in hysterical tears....
 The breast cancer RN coordinator talked with me.... she was wonderful, agreed that I had a bad experience and she suggested I meet my insurance provider in network oncologist ... to see if I might like him.

I think I am generally easy to get along with, easy to please... So I was wondering if I might  have been too sensitive because this is a really tough time and an overwhelming experience....

But... Then I remember a friend who had gone to the same oncologist at the "Premier" facility...

I called her to see show she felt about him... And I asked her why she left the great facility and why she quit seeing that oncologist.... She broke out in this huge description of how she left because of him, she filed a complaint about him... And how she was in a crying, screaming... fit when she left...

Okay, now I am validated.... I know it was not just me being sensitive....

How am I examined for two months, doctors could barely feel my lump issues... And I end up with lumps and nodes an inch or larger ???

What happened to :
*proactive action ?
*let's get on this immediately so the patient has their best chance of survival.... !
*the medical staff is knowledgable and knows what tests to run and what things to check so the patient is not put through unnecessary tests and surgeries and treatments.... !
*listening to what the patient feels and requests ?
*the medical professionals being well aware of things like "Dense Breast Tissue" ... and the extra steps that should be implemented !!??!!

I was told at first call of results of my mammogram... That I was probably only stage one at most... Even my surgeon said I probably only had a tumor the size of a pea.... At the consultation a couple weeks prior to surgery.
All of these medical professionals had all my mammograms and X-rays...
In view of being told that I had DENSE BREAST TISSUE.... Should they have ordered an ultrasound?
Should they have ordered an MRI ?
How were these huge lumps missed?
Were these lumps a result of shooting air into my breast for the biopsy???
If I had

For the past few weeks I have been poked, prodded, radioactively injected for a CTScan, and a Bone Scan.... Which I was told resulted in finding Gall Stones and an enlarged uterus that I knew about and have had a previous ultrasound of to show fibroids...
The bone scan showed a tiny spot on my shoulder which I have thought that I have had arthritis in for years...

My blood work has come back with normal liver, kidney,platelets etc.... So I am thinking I have a fighting chance....until the oncologist got ahold of my at the wonderful facility that I was previously so excited to go to...

Now I am told that I will undergo chemo, then mastectomy, then radiation... Be without breasts for 6-12 months... Then have reconstruction...

Oh, and I am still sitting and waiting to start chemo.... The fact that I had to heal from the drain has held me up a bit... But other than that... I am healing well...

The next appointment is for an outpatient surgery to install a porta cath in my shoulder so that chemo drugs can be administered in the port instead of beating up my vein in my left arm.... My right arm cannot be used because that was the side of my initial surgery.

Where am I now... How am I feeling....?

I am feeling like I am heading in to the worst two years of my life... And I am trying to figure out how to make it the best two years of my life.

TIME TO GET CREATIVE !

Sunday, November 13, 2011

time to embrace the situation

... ya know... times like this when you feel like you've tried so hard to do and help and I look back on all my mistakes.... gosh from the time when I was a little girl... things along the way in life that happened... and then I wonder  how we all made It this long...
I never meant to make bad choices, it's like i got caught in a whirlpool.... i tried hard to do right but just let myself get clobbered... but that is the past and I will work and get myself back.... 
then this thing... no one means to get sick, get cancer... it happens...and we tell ourselves... could I have done different to protect myself etc.... all that I allowed from outside is what has beat me up, has stressed me.... well, I am in my 50's and have learned that i must filter more of the stresses and appreciate my present.
so many people have is so much worse than I.... 
and funny you would say I would be tired of "feeling like a lab rat" .... you are right... and heck, I have just begun being poked, prodded, x-rayed, medicated and operated on.... I have had a good healthy life of strength and vitality.... and yes... I will work for more... and work for more with all of you....
I always ate good... and yes... I snitched fun stuff and fatty stuff, and forbidden indulgences... but I always came back to knowing and thinking healthier and better.... and now i must pull my boots on by the boot straps.... i will walk through the sloppy corral full of shit, get kicked, maybe butted, I will have to run for the fence to avoid a few mad cows, i will have joy in my self, my family, and in my friends.... and yes... i will fight like hell.... 
thank you for your support and love.... you are all so important !
I physically FEEL GREAT .... and I want to stay on that feel great road... using all my feel great... to keep me working through this !
forgive my moments of questioning, my moments of low, my moments of regret for my mistakes, and my moments of knowing that I allowed things in my life that I should not have allowed... and those are some of the reasons I question and get frustrated...  and those are some of the reasons that make me want to have a say in and to know what is happening to me... I want to make right choices for my treatment and for my well being.....
geez.... you must feel like a priest because I feel like I just cleansed and purged my soul.... sometimes you just gotta get it out of your head.....
It is time to stop looking back, fight forward, embrace my present, love and appreciate my present and future.... yep... and fight like hell !
let's saddle up and ride !
xoxo

Sunday, October 23, 2011

There is reality in more than ....

REALITY..... More than a DIAGNOSIS... More than the NEWS.... more than a MISPOKEN WORD.... More than WAKING UNDER THE PORCH and not knowing how you got there.... More than JAIL TIME.... More then a DRUG OVERDOSE..... More than a PARENT in DeNIAL.....

REALITY is LIFE.... What is your reality???????

Surgery is scheduled

I met with a new surgeon... I guess you can say... I got my second opinion...

Yay... I am glad I met with another surgeon... This guy is confident, insightful, sparing, and straight forward....

The first guy was good, straight forward... But I felt he had tunnel vision....steering me to what he just thought would get the job done.... He said...." we'll... We can do a lumpectomy... But if we don't get it all... We will just have to go back in for a mastectomy..."

This second surgeon's opinion is.... " let's do the lumpectomy... If we don't get it all... We do another simpler 4 hour procedure and continue to save the breast tissue....once you sweep the breat tissue away...it's gone.... and there is no turning back!"

So ...... I am scheduled for the lumpectomy.... I have pre-op day thursday and surgery early Friday.... Three days away..........

Wow wow wow...

We go along in our daily lives....And then we realize we need to live....