Irene From Tampa
 

Friends -
It's taken me a bit, but I wanted to let you know that Irene is not doing well. Perhaps some of you are already aware of her circumstance (I'm unsure when she posted last) but multiple mets and her resulting physical decline caused her to be admitted to the hospital.

These are very difficult times - as many of you are (unfortunately) far too aware of.

As I've been with Irene for over 20 years and I'm well aware of this forum. Its been a source of information, courage, strength, inspiration and yes, sadness.

It was for the latter point that I hesitated to make this post. You endure far too much uncertainty, challenge and grief for me to compile it. Life shouldnt be this trying.

With semi-specific mention of her circumstance (as I know the details will be understood within this forum) an October PET indicated she had multiple liver tumors. A brain MRI was also done which indicated brain mets for the first time in this 15year war. Cyberknife was ruled out and WBR was put off in favor of chemo. Just before Christmas week, a followup brain MRI indicated progression and mandated she undergo WBR as soon as possible - which was put off until after the holiday.

She took a downturn the day after Christmas - two days before WBR was to begin.

I've started a journal for her on Caring Bridge and I'll read any comments to Irene off there.

http://www.caringbridge.org/visit/irenefernandez


Please be well and accept my heartfelt - heartfelt - thanks for all you've done for Irene over the years. The care & support she's received here in no small measure has allowed her to get this far.

I have to run.

Love to all - John

Re: Irene From Tampa
 

John, Thank you for taking the time to let us know about Irene. She's been such a long time Her2 sister we have all loved and cared about. She had PM'd me quite a while back and was thinking of going out to see Dr. Slamon. I knew she had alot going on but she has always been such a true inspriation and warrior here. I was hoping as always she would find that magic combo and whatever it took to beat back her mets. She was always a fighter and always came up swinging. She is such an amazing lady and I feel so blessed to know her. However I am truly saddened by this news. It just breaks my heart.

I just went to her carepage and when I read her words that she wasn't giving up...that sounds like our Irene.) It brought tears to my eyes, & coming from her does not surprise me. I pray her trt brings her the miracles she SO deserves. We will all be pulling for her to get well.

Please let Irene know how much she is missed & loved by all here. She has been so blessed to have such a wonderful husband and daughers by her side through all this. I will continue to keep you all in my thoughts and prayers. Bless you both.

Chelee

Re: Irene From Tampa
 

John, you and Irene have our prayers. You guys hang in there.

Re: Irene From Tampa
 

John, sorry to hear about Irene. Tell her to stay strong and we are praying for her.

Re: Irene From Tampa
 

John, I know what a blessing you have been to Irene. Sending love and prayers. Keep the faith.

Re: Irene From Tampa
 

John, thank you for sharing. I agree life shouldn't be so trying...yet we are family here through it all.

Much love and prayers to you and Irene.

Chris

Re: Irene From Tampa
 

John I'm so sorry to hear this news and will keep both of you in my prayers and thoughts.

Re: Irene From Tampa
 

John,
Thank you for having the courage to come to the site and let us know of Irene's poor condition.

Irene has been an inspiration and I pray that she receives the strength to continue the fight.

Please let Irene know that we are praying for her and miss her posts on the board.

Love...Lori

Re: Irene From Tampa
 

John prayers going out for Irene and you as will.

Re: Irene From Tampa
 

John,

My thoughts and prayers go out to you and Irene.

Re: Irene From Tampa
 

John,

Thanks for letting us know how Irene is doing. I had been wondering what was going on.

All of you will be in my prayers.

Amelia

Re: Irene From Tampa
 

THank you John for posting. Not knowing is worse than knowing, IMHO. I'm praying for Irene and hoping she can pull through this. SHe's done it before!

Re: Irene From Tampa
 

Friends -
Heartfelt thanks for your thoughts & comments - expressed both here at the Caring Bridge website.
I added the below journal entry today - together with more select photos of Irene, myself and our entire group. There's no denying the severe challenges Irene's facing now and that lay ahead. As we've all found throughout the years, a sprinkling of denial can go a long way when consequences are dire and normalcy is sought. Unfortunately, denial isn't the strongest of warriors - as many of you already know.

You live by the heart. The heart defines you.
Be it brave, cold, courageous, fearful.....
Your intellect sculpts & shapes your hearts desires.

Together they make you whole.

When reality serves to break your heart.
When your heart's desires may no longer be attainable.
Hopefully, hopefully, your intellect can find you.
Hopefully, it pulls you from that darkness & gives solace.

To be honest, I'm not sure.

John

***************************************

Another day...more treatment and more hope for good things.

Although lethargic the majority of the time, Irene did receive both radiation and physical therapy treatments. Only time, treatment, prayer and/or positive thinking will tell if she'll overcome these considerable obstacles. She's most certainly trying.

Visitors are welcome although her energy level is very low, she cant engage in extended conversation and you may find her condition disconcerting/upsetting. She hears and understands everything though - holding out her strongest commentary for when declaring to the room that I talk too much!

As is her way, this never fails to bring cheer to everyone, but unfortunately causes me to talk more. I never did listen...you can ask her yourself, I'm sure she'll agree.

Positive results cant be measured in daily increments.
Small miracles dont happen everyday and sometimes they're difficult to discern - so I may not post daily - but your Guestbook comments are both emotional and inspirational to all. Thanks.

I've updated the photo area with more pictures of Irene in far better times.

Be well - John

Re: Irene From Tampa
 

Dear John and Irene I am praying for you. Sending hugs, Alice

Re: Irene From Tampa
 

John
Please repeat Irene's quote to her everyday!!!

I want to be an outrageous old woman who never gets called an old lady. I want to get sharp edged and earth colored, till I fade away from pure joy. It is her mantra, her spirit.

Please give her a hug and tell her she is in my prayers each day.

"I WANT TO BE AN OUTRAGEOUS OLD WOMAN WHO NEVER GETS CALLED AN OLD LADY. I WANT TO GET SHARP EDGED & EARTH COLORED, TILL I FADE AWAY FROM PURE JOY."
http://her2support.org/vbulletin/ima...er_offline.gif http://her2support.org/vbulletin/ima...ons/report.gif "I WANT TO BE AN OUTRAGEOUS OLD WOMAN WHO NEVER GETS CALLED AN OLD LADY. I WANT TO GET SHARP EDGED & EARTH COLORED, TILL I FADE AWAY FROM PURE JOY."
http://her2support.org/vbulletin/ima...er_offline.gif http://her2support.org/vbulletin/ima...ons/report.gif

Re: Irene From Tampa
 

My prayers are coming daily to Irene and thanks so
much for keeping us posted. We care and it hurts to
hear such things but we must know to send our prayers
and let our sister know how we feel. My thoughts headed north from Naples FL.
patb

Re: Irene From Tampa
 

Thoughts and prayers are going out to Irene right now. I hope she can feel them coming her way.

Hugs and Prayers,
Lexi

Re: Irene From Tampa
 

John, I am so sad to read that Irene is not doing well. I send you strength and hope. Michka

Re: Irene From Tampa
 

John,
Thanks for your heartfelt words. Sending prayers to Irene, she's one tough warrior who gives so much to others.
Flori

Re: Irene From Tampa
 

John:
Thank you so much for letting us know about Irene. She is much loved here and we will all be praying for her, you and her family. She is a lovely person and we cherished the time she spent with us sharing her life.
With tears & sadness ~ Ruth

Re: Irene From Tampa
 

John, Thank you for reaching out to us.
Please know we keep Irene and you in our prayers.

jean

Re: Irene From Tampa
 

Good morning John and Irene! The pictures brought so much joy to my ol' heart! I can just see that spirit of "digging into life" Irene has pressed into through her adventure these many years! I'm praying for the angels to arrive with miracles and blessings. ma

Re: Irene From Tampa
 

Dear John and Irene,

I had a little chuckle hearing that Irene is being the pushey wife that many of us might be. You talk too much? Oh well, that is better than being a quite mouse. Sending you love and prayers and strength to help the two of you and your family get through this struggle. Your words about the heart and intellect....were heartfelt and very meaningful. Keep talking to her because it seems you have a lot to say and a lot to give.

Hugs, Catherine

Re: Irene From Tampa
 

What a lovely site you have made for Irene. I am so saddened to hear she is not doing well, she has been such an inspiration. She is lucky to have such a loving husband and family by her side. I will pray for her and for you. sherry

Re: Irene From Tampa
 

I always loved the inspiring quote on Irene's page:

"I WANT TO BE AN OUTRAGEOUS OLD WOMAN WHO NEVER GETS CALLED AN OLD LADY. I WANT TO GET SHARP EDGED & EARTH COLORED, TILL I FADE AWAY FROM PURE JOY."

What an amazing fighter!

Irene and John, keep on fighting! Know that we have your back (with our prayers.)

Re: Irene From Tampa
 

Oh John. Thank you for taking the time to update us. Irene is a cornerstone of our family here, and she is cherished. Please send her all our love and prayers that the challenges lift for her soon. If I remember correctly, she is our resident Dragon Boat Queen... I admire her verve, spunk and spark greatly!

Re: Irene From Tampa
 

Dear John and Irene -
The poster above me (hutchibk) and I have both had to fight brain mets. Makes us feel even closer to Irene in her current situation.

Yes, you have created a lovely place for Irene's friends and family to get news and updates, as well as to leave their well wishes and expressions of love.

Irene is a lucky woman to have a mate who is not "taciturn." I love conversing with my hubby!

Re: Irene From Tampa
 

Hello all -
Thank-you for your mssgs of love & support for Irene - all of which I've read to her. Here's today's entry at Caring Bridge:


Another quietly eventful day.......
Following a good nights sleep, Irent built on yesterdays interaction by eating a good, multifaceted breakfast. A little bit of everything. (Yes - the towel did the trick again!)

Mid-moring she enjoyed a relaxing session with a Healing Touch therapist. I'd offered to help, but both Irene and the therapist
thought the better of it...

Andrea showed up just as Irene was finishing off a really good lunch and she served up some spanish "sugar laden" deserts (I wont try spelling them...but think really strong coffee....and some flan.) Irene's developed quite the sweet tooth.

A measure of Irene's returning strength & spunk:
As I was testing/tasting various food items for temp and deliciousness (she has high standards) she told me to stop eating her food! Needless to say, we had two trays worth to pick from, so she didnt go hungry!

When I left to come home and get some things, we were waiting on the physical therapist - to continue working Irene's left side which remains challenged. We're hopeful that reduction of the brain tumors plus PT will result in good things. If you were lacking a direction for your positive vibes...have at it.

Thats about it...but for the following:

Since Maxx & Mollie have been mentioned so frequently and since they're such a large part of our lives, I've added a few recent pictures of them as well. They wait anxiously at home for Irene return. Many thanks to Liz for taking such good care of them in my abscence. Some people just have good hearts and never disappoint.

And lastly......

Thank-you Betty for the ingenious tips of how the towel can be utilized to its fullest! I wont promise it'll be handled that way - but it'll go on the list.....wayyyyy down the list!

You all be well - John

Re: Irene From Tampa
 

I am happy to hear Irene is doing better. Keep up the good work. Eat up and enjoy the food !! Continue the therapies.

Re: Irene From Tampa
 

Sending my love and prayers to Irene. The radiation is exhausting, but hoping the tumors shrink and allow her to move more freely.

Re: Irene From Tampa
 

Dear Friends -

Troubling (and feared) news was received yesterday concerning Irene's health. While the immediate focus of her treatment was towards her brain tumors, we learned the mets in her body have spread considerably.

I honestly dont have the heart or strength to go into greater detail and in this forum dont believe it necessary.

I've posted on her website the request that her family & friends hold her closer and be stronger for her than ever before.

I consider you here to be her "her2 family" and given circimstance some of her dearest of friends.

I do have to run.
They'll be bringing her food in a bit and I have to prepare for the day. Please accept my apologies for having to break this news to you as I believe you already too burdened with heartache.

Please be well - John

Re: Irene From Tampa
 

Irene has been such a strong force of courage and support and a real fighter. I am so saddened to read this latest post this morning of more bad news. My love and prayers go out to both Irene and John. Pam

Re: Irene From Tampa
 

John, it's not an unwanted burden to hear news of a warrior sister who has given so freely and lovingly to all of us here! What a lady! Please let her know I'm sending hugs and love galore today! ma

Re: Irene From Tampa
 

Sending prayers out to Irene and John.

A great Warrior...

all the best
caya

Re: Irene From Tampa
 

John,
we all share the sorrow...but do not need apologies. That is why we are here; we are part of the family.

Thank you for sharing.

Re: Irene From Tampa
 

John,

You and Irene along with the rest of your family are in my prayers.

Amelia

Re: Irene From Tampa
 

Hi John,
Please know that my thoughts are with you and Irene. We were on the T-DM1 trial together. I spoke about her to my doctor and nurses. It angers me that she had to come off the trial because it was working for her. Please tell Irene that I am thinking of her.
Barbara H.

Re: Irene From Tampa
 

Hello John, My love and prayers to our dear Irene. Thank you for informing us. My heart aches. Ceesun

Re: Irene From Tampa
 

Barbara H and friends.........

I've been with Irene for over 20 years and have accompanied her through this entire journey. I say that not to direct attention to myself but to validate the following:

In the long course of this struggle Irene (and I) have encountered many knowledgeable, intelligent, and compassionate healthcare professionals. Irene owes her life to these persons, organizations and corporations.

She / we most certainly recognize this.

She / we have also come to recognize and know how the "system" works...or more precisely how the system can work when properly directed. When motivated not by faceless corporate profit and bureaucratic stasis but by the joined / joint effort and motvation of individuals & corporations whose compassion for the human spirit is never lost - never forfeited in the name of bureaucracy - never lost in the "fine print."

She / we certainly understand the "industry aspects" of healthcare - we understand them at their most vital and important juncture :: how they maintain life. How they
restore the human spirit...the human heart...when the stakes could never be greater.

She / we also understand the "industry aspects" of healthcare at their harshest. When they represent the very antithesis of compassion. When they no longer serve the human sprit first - when they no longer seek to restore the human heart - but hide behind bureacracy and legalese...in the name of their own self preservation and financial interest.

Irene Fernandez will be 64 years old come January 22nd. Her current circumstance - her current
jeopardy isnt the result of the collective failure of motivated healthcare professionals doing their very best - its not caused by the failure of healthcare professionals sincerely carrying out their oath: to heal
the human body and sprit.

Irene Fernandez's current circumstance results from the combined failure of healthcare professionals who's goals arent for the individual - but profit. Healthcare professionals who tailor the outline and dimension of care not for the gift of life it can offer - but profit.

Irene's current circumstance can clearly be traced to the hasher elements of the healthcare profession..working to do her in.

Irene Joyce Fernandez is the very defination of a "compassionate use" patient - the term was coined for individuals like her.

Irene Fernandez was a "star" of the TDM1 trial. The drug eradicated double digit tumors and she was classified NED.

But because of an elevated level of a thing called billirubun - she was kicked off the trial.

Because of this thing called billirubin - Irene was put at jeopardy.

Because of the combined failure of healthcare professionals - practicing at their harshest and concerning themselves not with the human spirit...not with restoration of the human heart...but with selfish, profit oriented goals...Irene is in danger.

Show her the waiver.
Present her with the release.
Craft them as dilligently as deemed necessary - BUT GIVE HER THE DRUG.

Give Irene Fernandez the drug.

Live out your creed as healthcare professionals and restore her life.

John Parachini
on behalf of Irene Fernandez
Tampa, Florida

Re: Irene From Tampa
 

Amen, John! Open their eyes and help them find the way to truly care! ma