Irene From Tampa

[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

[Chelee]

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

[Bill]

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

[WomanofSteel]

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

[BonnieR]

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

[chrisy]

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

[tricia keegan]

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

[Lori R]

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

[Yorkiegirl]

John prayers going out for Irene and you as will.

[RhondaH]

John,

My thoughts and prayers go out to you and Irene.

[schoolteacher]

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

[MJo]

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!

[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

[Midwest Alice]

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

[Sheila]

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/images/statusicon/user_offline.gif http://her2support.org/vbulletin/images/buttons/report.gif (http://her2support.org/vbulletin/report.php?p=219884) "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/images/statusicon/user_offline.gif http://her2support.org/vbulletin/images/buttons/report.gif (http://her2support.org/vbulletin/report.php?p=219773)

[Patb]

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

[lexigirl]

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

Hugs and Prayers,
Lexi

[michka]

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

[SoCalGal]

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

[Ruth]

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

[Jean]

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

jean

[Mary Anne in TX]

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

[Catherine]

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

[Sherryg683]

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

[Jackie07]

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.)

[hutchibk]

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!

[StephN]

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!

[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

[ElaineM]

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

[StephN]

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

[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

[Pam P]

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

[Mary Anne in TX]

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

[caya]

Sending prayers out to Irene and John.

A great Warrior...

all the best
caya

[chrisy]

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.

[schoolteacher]

John,

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

Amelia

[Barbara H.]

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.

[Ceesun]

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

[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

[Mary Anne in TX]

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

[chrisy]

Amen, again John.

[StephN]

John -
Know that we feel your pain seeing Irene's disease come back on her so quickly. It is a shock after she had responded so well to the T-DM1.

It is exactly for people like Irene that our group has been asking Genentech to release it for Compassionate Use.

Clinical trials are run to uncover all kinds of information. The billirubin elevation may or may not be very meaningful, but the trial managers made the decision to withhold.

Joe of this web site may know who you could try to speak with at Genentech to restore Irene's treatment. You have my prayers that the previous decision will be changed.

[schoonder]

It would seem that there is need to augment the clinical trial practice with some new process for refractory patients that no longer respond in accordance with sponsor and FDA agreed test evaluation criteria and for whom no alternative, potentially efficacious treatment is at hand, which in so many instances is the case.
And yes, that new process should definitely include option to continue receiving original drug(s) used by ongoing clinical assessment.
Not only is it possible, even probable that patients assigned to and treated in this new setting will reap more benefit from this service than being outright excluded from it, but they also continue to provide science with further data about drug’s performance when re-administered after some period of discontinuation.

[IRENE FROM TAMPA]

Conversations took place yesterday regards Irene's circumstance and the ready access to TDM1. As already mentioned / posted in this forum, such access isnt currently available.

There may be issues with the drug - although its agreed that the drug does work in many people in their fight against a terminal disease.

As mentioned to the Genetech representative, their stated search is a CURE for cancer - in its many varieties & complexities - one, two at a time. These trials are many and well founded, providing the statiscal basis on which "cure" is processed and offered - however, one stastistic should be unavoidable in their considerations - zero.

Irene Fernandez had double-digit tumors reduced to zero.

TDM1 may be the cure for Irene Fernandez.
TDM1 may be the cure for many of others at this forum.
TDM1 may not be a perfect drug yet - that process continues in good faith - but it worked "as is" now
on Irene. Unlike any chemotherapy taken previously - and over a 14-15 year period there have been many - TDM1 made her tumors both shrink and disappear.

Liver toxicity levels are a concern - but when compared to the ravages cancer will undoubtedly impose on her body - its a minor challenge. Irene's faced larger mountains with a strong heart.

Its a risk worth taking - its a risk she's been willing to take for many months, but her voice went unheard - unheeded.

In the complex healthcare field, Irene needs a partner of similar strength & conviction as she.

Irene lives in an absolute world.
Perhaps others on this forum - most certainly in the country share her circumstance.

There are no greys - its fairly black & white.
Maybes dont exist - its yes or no.
Good intentions..a well placed heart - dont count.

After a long and hard search - a battle to stay alive until such a cure could be discovered - TDM1 was found. This may be it for Irene. In every sense of the phrase.

Irene's (our) plea isnt made for "good intentions"...
Its not a search for calm in a difficult time...
Its not an effort to leave no stone unturned...
Its a desparate / first clenching grab for life.

Adminstrative concerns wont change the nature of this moment. A long clerical/medical "to do" list cant prevent action. An expression of concern - although accepted as heartfelt - wont suffice.

Action is needed.
Bold, creative, motivated action is whats necessary.

I believe Genetech is capable of these things - if they have the will.

I believe Genetech is capable these things - if they mirror Irene's strength.

I believe Genetech can cure Irene's cancer.

I believe thats their stated goal.

The time is RIGHT NOW.

[Mary Anne in TX]

John, I so agree that the "drug dealers" working to "find the cure" must have the level and depth of courage that Irene and so many others express daily. Line up the lawyers ready to have the "you're not responsible" papers signed....But give them the drugs! I'm prayin' for your miracle! ma

[suzan w]

I am so sorry to hear this, John. Peace and love to you and Irene. xo Suzan

[Lani]

John, can you find out who is in charge of herceptin-TM1 at Genentech and have Irene's oncologist contact them directly? Could he put a human face on the situation and ask as one human to another if there is not a way Irene could give up all rights to sue and continue to receive the drug?

I have met the persons responsible for herceptin @ Genentech (she left soon after it was approved), lapatinib @ GSK( he left around the time it was approved) and knew the son of the woman in charge of rituximab development and trials @ IDEC (who was willing to ask her questions on my behalf). All were very considerate human beings. They must get these types of questions all the time, but not often with a face on them. Perhaps your doctor could arrange a video conference call if he/she does not get an emphatic no to his/her plea.

Just thinking out "loud"


Hope some of this helps!

[IRENE FROM TAMPA]

Friends..

I posted an update at Caring Bridge regarding Irene. I dont have the strength to repeat it.

Please be well - John

[chrisy]

Here is John's post on Caringbridge:

Dearest Family...
Dearest Friends...
Dearest Loved Ones...

I'm heartbroken to bear you this news...but Irene's battle is over.

Dr. George met with Irene, myself and the girls this afternoon...to graciously and with dignity let us know the war couldnt go on.

Irene's liver simply is no longer up to the task.
He recommended discontinuing care.

We're uncertain...actually doubt...if Irene understood the import of Dr. Georges words. She showed no reaction.

So...its over.

In recent times I'd been told that Irene & I had done just about everything that possibly could have been done in this long engagement. I know Irene had...and I struggled to mirror that effort in her abscence. I didnt want any stone left unturned...any possibility left unexplored. In the end, we simply ran out of stones.

In coming days we'll explore ways of bringing Irene back home...back to our home...where she belongs and where will always be part of. I want her care to be dignified and loving. She deserves nothing less - much, much more.

Two things please........

In recent days Irene was searching for the words to some prayer....and had the phrase "Jesus stay with me..." in her mind...but couldnt construct or recall the remainder.
Does anyone know if this truly is part of a prayer? I do not. If so, please be so kind to let me know.

Also - Friday will be Irene's 64th birthday. Come. Be with her. Please.

I do have to go...my heart is out of words.
Please be well and please go well.


Love to all - John


John, I have no words - only continued prayers. I don't know the specific prayer Irene is seeking - Jesus stay with me - but I do know that it will be so.

Please give Irene my love,
Chris

[Sheila]

I am so tired of bad news while drugs that can make a difference are not made available...even as a last effort.
Tired, sad and feeling like we are all just waiting our turn. Words cannot express...............

[Carolyns]

So sad to hear. Why does this have to go on? When will it end? Irene is such an inspiration and she deserves so many more birthdays...

You are in my thoughts and prayers. Praying for a miracle.

Love, Hope, Peace, Carolyn

[vlcarr]

Shedding tears of sadness as I read this post. It's just so damn unfair......I'm getting ticked off about our sisters and brothers dying of this cancer and having to fight to get the treatment they need and deserve.

Irene is a true warrior. John, wishing you all strength during this very difficult time.

[Chelee]

John this news just breaks my heart. What a fighter & "true" inspriation Irene has always been to me. I'm so sad and angry at the same time. Irene has always been one of the strongest women on this board, & I really believed she would pull through this. Sending all my love to Irene. I will continue to keep all of you in my thoughts & prayers.

Chelee

[Lien]

Oh John. I am just numb. I am so sorry. I'm glad you will help her leave this world in a dignified, loving way. Just 64. This disease STINKS! Please tell her she is surrounded with love. Tell her she brought wisdom and beauty and love to our community and that the essence of her will live on through us, through those she inspired.

Love

Jacqueline

[Pam P]

I'm staring at this screen numb with this latest news. Words don't come only feelings. I'm trying to imagine Irene blanketed in dignity grace and love.

[Mary Anne in TX]

This news of Irene flattens the spirit and challenges the hope of better tomorrows. I know they are working hard to find the answers, but to know one is right and available to some is so hard when it is denied to the most desperate. Love to Irene and John and the family. ma

[StephN]

Dear John -
To borrow a phrase from American statesman Thomas Paine, "These are the times that try men's souls."
Not only men, but women and children are tried.

Our souls ache for Irene and all her dear, steadfast family and friends. She has had a long, very positive connection with many of us on this board.

I hope someone will come up with the rest of that prayer. It seems that Irene has been closer to her maker in recent days.

[SoCalGal]

I found this online...my heart is heavy and I'm sending prayers to Irene, you and her family and friends.




Sam Cooke, Be with me Jesus Lyrics

Oh Lord, the time is growing high
When I must breathe my last breath inside
Lord, in my dying hour, stay with me, Lord

Oh Lord, my friends have gathered ‘round
They’re watching me slowly, slowly sinking down
Lord, in my dying hour, stay with me, Lord

Now Lord, now Lord, now Jesus time have come
When I’m a leave my earthly home
Friends standing around, tear in the eyes

They know that I am about to die
But I’m not worried, I’m not afraid
I know you do, Jesus, just what You say

You be with me Lord, day and night
I’m not afraid, I said I’m dying, don’t leave me now

Oh Lord, I know you’ll stand by me
When I’m in trouble, when I’m in misery
And Lord, in my dying hour, stay with me, Lord

Oh Lord, I know You’ll stand by your word
Whenever I call You, I know You have already heard
Lord, in my dying hour, stay with me Lord

Now Lord, I said farewell, fare thee well
Fare thee well to my friends down here
I’ve got loved ones waiting for me up there

Oh Lord, others are waiting for me
What a reunion, I know that will be
Lord, in my dying hour, stay with me, Lord

[chrisy]

I've been posting on Irene's caringbridge page...and like John find it too much to post in both places.

Irene has always been my inspiration, and will always be.

I so admire how one moment she would feel herself running out of options then the next would find her squeaking through a partly open window - and running full force again, sometimes for a long time.

Irene told me once that she sometimes hesitated to post because she hadn't been "cured" and didn't want to scare people. Yet although cancer is scary, Irene is the antithesis -always bold, heroic (although I doubt she would call herself that) and full of both passion for life and compassion for all she came in contact with.

[Barbara H.]

These are such sad days. Irene is such an inspiring and uplifting person. I'm sure that TDM-1 would have given her more quality time, and I have trouble dealing with the rules that still do not allow it to be released for compassionate use. My thoughts continue to be with John and Irene and their extended families.
Best,
Barbara H.

[IRENE FROM TAMPA]

Hello all.....
Many thanks to you all for the love & support you've shown Irene (and I by reflection). Without doubt these truly are the most trying days of my entire life...unquestionably.

I gained a sense of peace somewhere along the line today...and mention it in my post at Caring Bridge...but its dissapated in the few hours since typing the last word. I fear it will be this way for quite some time.

Unfortunately, this system wont allow me to copy/paste it to this forum...so if someone could assist me I'd appreciate it.

Be well - my goal is to get some sleep tonight as tomorrow is Irene's birthday, but sleep has been too great a challenge of late.

John

[Yorkiegirl]

John I just copied and pasted what you wrote on the Caring Bridge site today.
My prayers still continue for Irene and you and the girls.
++++++++++++++++++++++++++++++++++++++++++


Today has been long, busy, tiring and yet mentally settling.

Irene had a restless night as her breathing was challenged.
She was unable to cough fully and clear her throat of some fluid, so the nurses were called multiple times to check her lungs and move her into a better/different position. In her lethargic state, she's not swallowing properly...fluids can go to her lungs...so the doctors have mandated nothing be given her by mouth.

Her ammonia level rose to 140.
Her bilirubun rose to 6.3
Her platlete count dropped to 19.

I cancelled her 15th - the long sought last radiation treatment. In Irene's condition, it would serve no curative purpose and it seemed an injustice to put her (and the technicans) through it.

She's resting comfortably besides me.

Perhaps she's overheard our room conversation...that she'll be going home. I (and the girls) visited Hospice House mid-morning and after learning the parameters of their service, decided fully to take her home to rest. We'll meet with the Hospice representative from the hospital on Saturday to make those arrangements.

I'll set her up in the middle of our family room - where she can be surrounded by all her loving friends...family...Maxx & Mollie - for as long as she'll let us have her. Hospice will be on hand (or on call) to keep her comfortable and I and the girls will fill her days with music, reading, sunlight and love. Lots of love.

When we have her there...come often...make yourself (and Irene) comfortable.

From the Hospice House we traveled to east Tampa - to revisit a patch of ground Irene & I had chosen many years ago as our final resting place.. She was to have a stem cell transplant...a possibly fatal procedure...so such arrangements were necessary. She made it though the transplant and the many months thereafter. It wasnt easy..but she/we made it...the land wasnt needed and since its matured into the quiet, peaceful place we envisioned.

Discussions took place and tentative arrangements were reached to care for Irene after she passes. Irene's final days wont be cluttered by administrative matters. Eventually Irene (and someday I) will rest beneath a proud oak tree...with wind chimes and gentle breezes. A bench will be left for you to sit on...and tell us of your day.

My heart overflows whenever I read the many prayers & passages that you all have provided for Irene. Theres something too special about such loving expressions...I dont have the words. Rest assured...I promise...that I will read each and every last line to Irene...as softly and best I can.

Although it wont ever be forgotten, its time for me let today go.

Dont forget - tomorrow will be Irene's 64th birthday. If you cant come and give her a kiss...think of her all day. It will be her last birthday - so make sure you dont forget to celebrate the entirety of her. Fill your day with her. No "Sorry I missed your birthday" cards will do this time.

As I close, Irene is "exercising" both feet under the sheets...
Dr. George's words probably ringing in her ears.

Its tender, heartbreaking and no wonder why I love this woman so much.


Love to all - John

[ElaineM]

Many hugs to you and Irene. I hope she has a wonderful birthday. Her life and her strength should be celebrated by everyone.

[Jackie07]

Happy 64th Birthday (1-22), Irene. We'll be celebrating with you.

[Shen Zih kuai Lerh]

[bejuce]

Happy birthday, Irene!!! I'll be praying and thinking of you and your wonderful
family who loves you so much!

Here's happy birthday in Portuguese:

Feliz Aniversario!!!

[WomanofSteel]

Happy birthday Irene. Please know that you are surrounded by prayer, love and comforting hugs. I am glad that you have such a wonderful man to care for you. You and your family are in my prayers daily.

[Lien]

Dear Irene,

Happy Birthday & Hartelijk Gefeliciteerd (Congratulations from my heart) as we say in the Netherlands. May the love you have showed to all be mirrored a thousand times in this world.

As a birthday gift I am sending rays of light and well-being.

Love

Jacqueline

[schoolteacher]

Irene,

Happy birthday.

Amelia

[alicem]

Irene,

I'm sending you birthday greetings and hugs from Deep in the HEART of Texas. My love goes out to you and your family as you celebrate today. Your life has been a gift and an inspiration to us all.

Love, Alice

[Barbara H.]

Happy Birthday, Irene.
I have been thinking of you all day.
Barbara

[whatz]

You were in my prayers this morning. Happy birthday to you!

[mmoons]

You were in my thoughts so much today. Praying for peace for all of you. Irene was my grandmother's name....lovely, lovely name.

Sending love,
Maureen

[Ruth]

I woke up this morning wishing Irene a beautiful Birthday as she shares these moments with you all. I go to bed tonight thinking of her too. She shares my sisters name and one of my best friends birthday. Thank you for sharing so much with us John. It is greatly appreciated.
Much love and peace ~ Ruth

[jhandley]

Happy Birthday Irene
I am praying to Sister Mary McKillop (our nearly new Australian saint) for you.

God Bless You.
Jackie (down under)

[Barbara2]

Happy birthday, Irene. Sending love, hugs, and prayers to you and your loving family. God bless and keep you all, and bring you peace.

[IRENE FROM TAMPA]

Sorry I've not posted for a few days, but they've been both evenful and tiring.

Irene's birthday was a happy day...yet sadness was lurking. So many friends and family members came with best wishes and happy hearts that at times the air was filled with happy laughter and friendship. Tears of both joy and saddness could easily be found.

The hospital had to ask the overflow to contain themselves when in the hallway. They've been nothing but hardworking, understanding, caring and kind during the entire ordeal and I want them to know that its recognized and taken to heart. It takes a special heart to remain strong amongst such trying circumstance - yet these people can do it.

Irene's white blood cell count had dropped below 1 - so surgical masks and antiseptic soap were required by all. Her counts havent been this low since the stem cell transplant.

We hope to bring Irene here tomorrow. Hospice didnt show up yesterday so our meeting was delayed by an administrative snafu. So I hope to meet with them this afternoon...hopefully time enough for them to get the necessary equipment to the house.

The girls and some friends are coming over today to help take down the Christmas tree and decorations which have remained in place since the house was evacuated about a month ago. Its odd to be walking amongst gift packages and alike that bring only an odd sense of detachment and sadness.

Its early Sunday and I'm at home.
I came here yesterday evening to organize things a bit but simply ran out of gas and couldnt make the drive back. Andrea was good enough to bring me some necessary medicine so I could remain.

I'm totally exhausted yet cant find sleep in my own bed. I dont know whats to come of the future, but I foresee cold seas and I'm a tired swimmer. Best I keep thoughts to a minimum.

As I often do, I ran through my picture albums of better times...but must admit I'm crushed and they didnt have the desired affect. Hopefully next time.

I updated the Caring Bridge phote album with some more pictures of Irene during happier times and with good people.

Be well and all my love - John

[IRENE FROM TAMPA]

From Irene's Caring Bridge website:

Tomorrow Irene comes back home....to a spotlessly clean house. The girls, Irene's brother Paul, his Soul Mate Liz and the irrepressible Erma cleaned this house of dust of the ages. The dust of some dinosaur fossils were found...just before being sucked up into the vacuum cleaner!

Truly : they deserve serious praise for their hard, extensive work. For the honor they paid Irene.

Michele & I met with a Hospice representative at the hospital in the afternoon and arrangements were put into motion. Necessary equipment will be delivered before noon - then sometime in the afternoon I'll be dropped at the hospital so I can ride with her back home. She's coming home.

I found loading up the car with things from Irene's hospital room difficult. Over the years I'd wheeled cartloads of flowers,
clothes in plastic bags, luggage & medical supplies...from many of Irene's hospital rooms, but something was different this time...something undefined.

Until it hit me: it was the flowers.

These flowers would be different. Irene wouldnt be getting well this time and "suggesting"where I should plant them. Irene wouldn't be healing and tending to them months after...or being certain I did. Irene wouldn't be there to put cuttings into a table top vase and light up the room. It was the flowers. These flowers had no home and I found myself crying while filling my car with them.

There's so many things about this turmoil that simply destroy me. I see others struggle as well...but sense they have a better grip and I'm both puzzled and jealous. I know I'm suppose to find peace...find understanding in that she'll be in a better place...at rest...when this war finally ends...but my heart and mind simply aren't on the same page. They cant find accord...and I cant find peace.

Before leave leaving Irene for the night, I spoke to her.
The nurses had recently roused her...causing her to open her eyes. Andrea spoke to her Mother lovingly and Irene's face relaxed into peace fullness...her eyes closed contentedly as she listened. Then I told her how much I loved her and asked her to have sweet dreams: "to dream of Italy...to remember
Cortona...Kay & Ed....Fernando & Giovanna...dream sweet dreams darling...remember Italy." A tear formed under her eye which Andrea wiped away. I'll always remember that.

Before leaving the room I stopped and returned. Pulling some paper from my suitcase, found the prayer: Stay with me Lord - and read it to her. If she should pass during the night...if should she should pass in my absence...I wanted my last words to her to bring her comfort.

Although I've never felt such anquish before...and I hope never to again...I want to do this right. I need to do this right. I want her to know I love her...and that it was done right.


John


ps - theres some new photos in the album.

[StephN]

John -
Thank you for opening your heart here and showing all the spirit the family and friends are pouring forth in these gut wrenching days.

You are " a prince of a guy" as my dad would day.

[Mary Anne in TX]

John, what you daily give to Irene is what we all long for and greatly fear won't be there for us when we need it most. God bless you for caring so kindly and choosing rightly for Irene. ma

[IRENE FROM TAMPA]

Irene is home.

On a sunny, blue sky day...Irene came home.
Our family room is filled with the reflected sunlight of late afternoon and the sounds of Tuscany are flowing over her.

Most precious is that she's amazingly aware.

Following many days of silence, I arrived to the hospital to find she'd "woken up" and could stare up at the girls and myself. She's recognizing and acknowledging people and conversation with head motions or light moans.

She recognized Mollie calling out to her from outside and per her gently when Mollie was brought to her.

My guess is...that she's been laying back...resting and marshalling her strength all the while listening to us talk about her coming home...and she didnt want to sleep through it!

Amazing woman.

Rest assured....
She knows that I love her...
She knows my heart is hers to take on her journey...
And I know that she loves me too.

Taking her hand I told her that I'd never stop pestering her and love her forever...and she smiled.


John

[DonnaD]

Welcome home Irene. So many thoughts and prayers are with you, John and your family.

John, thank you for keeping us informed. What a beautiful lady you are Irene (your new photo). You are all loved.

Donna

[StephN]

Glory be! She did not want to pass at the hospital and John knew that.

I am wondering if the treatments for Irene's brain might be helping with her awareness. Hoping that some of the stress is off the important areas and that will make her more sensitive to stimuli.

No one can really rest in the hospital anyway. Nothing like home sweet home.

[Lien]

Dear John,

I'm so glad she's home, knowing that she is loved and cherished and able to smile.

You people are amazing!

Hugs

Jacqueline

[IRENE FROM TAMPA]

Dear friends -

Irene passes away tonight around 10:30.
Peacefully and quietly - no pain - no anquish.

Think of her often...and smile.


Love to all - John

[Chelee]

John, I'm so glad Irene made it home. There is no doubt in my mind that is why she held on a little longer. I have had Irene on my mine daily and although I knew this was coming it does not make it any easier. As I type the tears come. I've said it before & I'll say it again. Irene was a true inspriation to me & I will so miss her presents on this board. But I will forever hold her in my heart. John, my sincerest condolences to you and the family at such a difficult time.

Sending much love to you and your family. God bless you all.

Chelee

[Paty]

John,

God bless you and your family, she will be missed so deeply by all of us. My prayers go for you and your entire family. My heart is broken.

Paty

[Lien]

Dear John,

Thank you for letting us know. Hearing she was at peace and surrounded by love when she passed makes it easier for me to accept she is no longer on this planet, physically. Her spirit will be with us for as long as we live. She was an exceptional women with a great sense of humor. I hope you will be at peace with this too. My sincere condolences to you and all who loved her.

We will not forget.

Love

Jacqueline

[whatz]

Dear John,
I never met Irene in person but feel like I've known her a long time and will miss her terribly. Though I know she is in heaven where there is no cancer I still sit here crying. Praying that peace above all understanding may blanket and fill your heart and carry you forward.
Anja

[schoolteacher]

John,

You and the family are in my thoughts and prayers.

Amelia

[IRENE FROM TAMPA]

Dear friends, family & loved ones.....

I'll be brief as too many words can prove difficult.

Its been decided that services to honor Irene will be on Sunday, January 31st, 2010 @ Garden of Memories Funeral Home & Cemetery.

All the many who's lives Irene touched are welcomed - all of you.

Family is asked to arrive by noon for private time with Irene afterwhich all others are invited to join in remembering, celebrating and embracing her life.

Speakers will be welcomed and a chapel service will be done around 2. Afterwhich, a short ride will take Irene to her final resting place.

It was initially considered that a donation to The Breast Cancer Society (in lieu of flowers) would be appropriate. However, this is Irene's day and although they do good work - I ask that you fill the room with flowers.

Garden of Memories Funeral Home & Cemetery
4207 East Lake Avenue
Tampa, Florida 33610-8035
Phone: (813) 626-3161

Following graveside services, you are welcomed back to our home at: 14720 Bellamy Road, Tampa, Florida 33625 to relax,
be amongst friends and reminice.

All my love - John

[StephN]

Thanks, John, for the info for the service in Irene's honor.

They have gorgeous flowers all year around in Florida!

Irene was an active and valued member of this support group (over 550 posts) for five years.
I am sure she would be pleased to see donations to HER2support.org in her memory.

[v-ness]

dear john - i have not been on this site long enough to have 'known' irene at all, but i have been following her story for some time now. i know in my heart that irene held on long enough to celebrate her birthday and to come home to be in the place she loved with the people she loved. it must have given her great peace. i lost my husband to cancer 3 yrs ago. he did not make it home from the hospital, but he did hang on long enough for me to make it there when they called me at 4:30 AM as he suffered a heart attack that actually took his life. i know he held on, just like irene, so that i could tell him i loved him and that he was the best thing that ever happened to me. i am SO glad that she got to be with all of you for her birthday and for her last day and that you got to have her close by. i have been very moved by your intense devotion and by irene's spirit. when she slipped from this earth, perhaps she really did fade away from the pure joy of being home and with you.

valerie

[Bill]

John, please accept our prayers and condolences.

[ammebarb]

I am so sorry, John. I wish you comfort.

Barb A.

[bejuce]

I am so sorry for your loss, John. May you find strength to go on with your angel now in heaven. Your love for her has inspired me and your posts have made me cry. I can see your beautiful Irene in a heavenly garden full of flowers with a big light coming out of heart and shining in on you.

My prayers go out to you and your family in this difficult time.

[Barbara H.]

Irene was such a special person and member of this group. I so looked forward to her inspiring posts. I will truly miss her. John, please accept my condolences. You and your family remain in my thoughts.
Barbara H.

[Kavy]

John,
I am so sorry and sad to know about Irene's passing. I have been praying for her since she went to the hospital. She was a very special lady and an inspiration to all of us. I liked to read her posts very much. She will be missed.
Irene was blessed to have you in her life, and so were you.
I am praying for Irene, you and your family. My deepest sympathy.
Hugs,
KarlaV.

[IRENE FROM TAMPA]

Fernandez-Puleo, Irene 64 or Tampa was taken by the Angels on January 26, 2010 following a long, courageous and inspiring battle with breast cancer. Irene passed away peacefully and tranquilly at her home, surrounded by her loving family, to begin a journey anew.

Many do aspire, but not all do touch as many hearts as Irene had during her lifetime.

A loving Mother, Nana and Partner, Irene was a beacon of hope, confidence and happiness throughout her life. Never more so than during her 14 year battle against breast cancer.

Born and raised in Tampa, she shared with those she loved and those fortunate to know her an inner strength and love of life that marks her passing…that leaves a void.

Daughter of Paul Puleo & Josephine (Tamargo) Puleo, Irene is survived by daughters Michelle Chaplin (Todd), Kimberly Karpodinis (Jim), Andrea Stachewicz (Shawn), nine beautiful grandchildren, Brother Paul Puleo Jr. and a large and loving extended family. For safe keeping, she carries the heart of long time Partner and Soul Mate John Parachini with her.

A visitation will take place on Sunday January 31st, 2010 from 12:30 to 2:00 PM at the Garden of Memories Funeral Home. Services to honor Irene and her life will begin at 2:00PM and internment will follow at the Myrtle Hill Memorial Park.

[alicem]

John,

I have not been able to post until now. My heart has just been too heavy with grief. I only knew your lovely Irene "electronically" through this site. Yet that is what is so wonderful about this site . . . it enables all of us to reach across the expanse of this world and be touched by one another.

Irene was a woman who was special to me in the brief time I have been posting here. I was always amazed by her strength and her fortitude, and now I am touched by the way you have brought us into your life. There is one thing that speaks volumes about your beautiful wife, and that is in the phrase you wrote . . . " her 14 year battle against breast cancer. " I don't know that there are many that would be willing to fight for so long.

Please accept my condolences for your great loss. The loss is so great because the love was so deep. May you in time find the comfort that you deserve.

Sincerely, Alice

[IRENE FROM TAMPA]

Irene was laid to rest on Sunday, January 31st 2009 following a nice service within which many spoke of her affect on there lives.

The "spirit" of the room buoyed my own.
The many and continual greetings...hugs...and good wishes kept my thoughts positive...and excepting for some darker moments (to be expected) I've been able to maintain an even keel about things.

One of the photos I took in Italy....the "reach out and snap a shot" of our two heads pressed together was cropped and placed beside her casket. Irene looks radiant. It was accompanied by the room full of flowers I'd hoped for and a myriad of photos and clippings that marked her life. That picture hangs on the wall of the family room now...so I sense her still with me.

At her gravesite, one of her healthcare providers whispered something to me...that Irenes doctor...Doctor George...had told her that Irene was his longest living patient.

Her continual fight for additional life...her struggle for additional time to love and learn while on this earth...had bought her that time...gained her that experience.

Now its up to you.

Its up to you to carry on your own fights...to carry Irene's flag...together with flags of the many cherished loved ones and friends who struggle still or you have lost...another 14 years...until a cure is found...until a suitable maintenance drug is discovered...or until you or your loved ones are no longer in jeopardy.


As with the spirit in my heart...
As with that picture on my wall...
Irene will be with you all as you carry forward.

All my very best...

All my love...care...appreciation...and best hopes go out to each of you.


John
2/6/10

[Chelee]

John, What a wonderful description of Irene's service...I can almost picture it as if I was there. You have a wonderful way with words. Irene's service sounds as beautiful as she was.

I'm not surprised that Irene was Doctor George's longest living patient. Irene was a true fighter with a strong will to live...nothing was going to stop her. She was one very amazing lady that I will never forget. She was a true inspriation to me and so many others here...I feel so blessed to have known her. Thanks so much for sharing this with us. I will continue to think of Irene and smile. God bless you and the family.

Chelee

[Jackie07]

I just added Irene's favorite quote to my signature. What an inspiration! Yes, we are carrying on the fight. And she will not be forgotten.

[lkc Gumby]

Dear John. I am so sorry for your Loss of Irene. She was much loved and will be surely missed on these boards.
May God Bless you, Irene's Family and may you all be comforted of happy memories of this very special lady.