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A MESSAGE ON HOPE.........................


lisaRN

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I got to thinking the other day..... I almost always think of myself as being an optimist.... After all, it is usually me that is telling everyone in the family not to worry because with God's help, everything will get better.... I always tell people "we have hope b/c there are still options"

As those options started to wind down, I found myself more and more thinking about and preparing for the worst..... Not out loud, but the thoughts were swimming in my head......

last week, with the disappointment in TX I kept telling everyone, it's okay.... just b/c Ahmed doesn't meet the lung cancer vaccine trial (GVAX) criteria right now doesn’t mean there isn't hope b/c if any tumors DO pop up in the neck then we can just hop on a plane and go back to TX.

In my heart, I think I knew even before we went to Texas that we wouldn't get good news.....

Hey! Every single chemo regimen he has tried he has failed..... Dr. Coscia decided to start Iressa 4 weeks ago and although, I was telling the family things like "hopefully this one will work....I have a good feeling about this one....we still have hope", I sit here now and wonder if I had actually LOST HOPE....

I would have adamantly denied it a week ago....but looking back, I am forced to think about what I was doing last Thursday night, the night before we would go to the doc and get the CT results to see if 4 weeks of Iressa made any difference....

What WAS I doing that night???? I was already researching the next 2 drugs the doc was talking about changing to in case Iressa didn’t work...

I always do this, so this action by itself doesn't send up NEON signs that say " AH HA...... Lisa, you've lost hope!"

I still will say I don’t think I ever lost hope.... not in the prayerful sense.... I mean I always pray and ask GOD to give us a miracle..... The fact is I realized we DID need a miracle.....we DO need a miracle.....

You get so used to hearing bad news that after awhile ( I don’t know, perhaps it is a defense mechanism )...... but you get so use to hearing the "bad stuff" that at some point you don't even expect that there will ever be ANY good news........

Well as I said in a previous post on Friday we went to the doc and he said they had seen some overall improvement in the chest....no specifics until the final report would come on Monday, he said......

Well that WAS good news.....we are still cautiously optimistic ......but that IS good news..... Now with the September 23rd report in hand...... I can see the specifics of the changes.....

“….on the previous examination a mass that was measuring 5.21 x 4.04cm now measures approximately 2 x 2.5cm….”

“….the peripheral lesion in the right upper lobe that previously measured 2.5 cm now measures 1.6cm…”

“….an area of abnormality that measured 6.3cm now measures 5.37cm….”

“….a previous 18mm nodule is now 8 mm and the previously identified 1 cm nodule is now approximately 5mm….”

“….previously seen 3.98cm mass in right anterior pretracheal region is now 3.2cm….”

“….overall size of the subcarinal and right azygoesophageal mass appears mildly decreased….. Measured 4.87 x 4.5cm and now measures 3.81 x 3.5cm….”

“…previous study also demonstrated left hilar mass and adenopathy that has shown significant reduction where a previously seen 15mm left anterior infrahilar mass is now significantly reduced and measures about 8mm….”

“…..a left adrenal nodule identified on the last study has reduced in size and is now barely detectable….. Also a right lobe liver lesion appears slightly smaller and less conspicuous than the last exam…..”

I can hardly believe my eyes as I read this report…. IRESSA SEEMS TO BE WORKING ..... go figure.......I know it’s still early on and anything can happen, but isn’t amazing how HOPE can be rejuvenated? Just when you think you’re coming to the end of the road…. LOOK WHAT GOD CAN DO…..

So........I looked up the word HOPE in the dictionary…. Here is what I found….

1 : to cherish a desire with anticipation

2 : to desire with expectation of obtainment

3 : to expect with confidence

What I realized is that HOPE IS what I have and that it is actually my lack of confidence or my low expectations that overshadow my HOPE.

HOPE is as much a gift and a mercy from GOD as good health is…..

HOPE is what keeps us going from day to day………

HOPE is NEVER LOST…. I might misplace or displace it once in awhile, but HOPE is ALWAYS there……

WITH EVERY DIFFICULTY ~ THERE IS RELIEF.................LISA :D

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Lisa

Wonderful and hopeful! Were you able to talk to the Dr about this? It does sound very good! Very, Very good!

One thing I do remember hearing is about stamina. How is Ahmed doing pysically and emotionally? Can you tell a difference in those things? Those are important, too! I sure hope so!

elaine

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hi elaine,

yes, he has so much enegry.... he is up and around most of the day.... 4 weeks ago he slept most of the day and barely moved from his recliner....

the only complaint he has is the diarrhea which has been intermittent but when it does come it is horrible and debilitating..... :x

he is taking Immodium but that doesnt help much....is there anything better out there to stop the diarhea?

also we DID talk to his doc briefly.... he didnt say much other than continue on Iressa and come back on Oct. 4..... i think he is being careful not to get too excited just yet.... but anyway we will see what he has to say monday.....

WITH EVERY DIFFICULTY ~ THERE IS RELIEF..............LISA :D

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Lisa,

Every now and then, we all lose our way, we all are consumed by doubts and fear... Many come here, to be lifted back up, others spend time away to re-build their soul. No one loses Hope, but sometimes, the monsters are so loud, we cannot hear Hope. It sounds like you have your ears back - glad to see that you caught your stumble...

Here's one of my favorite poems, copied just for you (not like I had to break out the pens and work the calligraphy, just cut and paste in the virtual world).

Take care of you and yours,

Becky

Hope is the Thing with Feathers

~Emily Dickenson

Hope is the thing with feathers

That perches in the soul,

And sings the tune without the words,

And never stops at all,

And sweetest in the gale is heard;

And sore must be the storm

That could abash the little bird

That kept so many warm.

I've heard it in the chilliest land

And on the strangest sea;

Yet, never, in extremity,

It asked a crumb of me.

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First, Becky that is one of my most favorite poems.

Second, Lisa I love your posts. I have always tried, but not nearly as eloquently or as well written, to tell our story. The good, the bad and the ugly. I wanted my friends here to know us, to understand our journey. You do this so well. You have made us a part of your inner family and because of that we care deeply about how it all works out.

I think sometimes when we post here, we keep a part of us hidden, our fears, our joy, our concerns. When I was writing our story I tried to tell more than just our lc story, but the story of who we were. I realized that most people were only telling their lc story. Even though lc cut my love story short, lc was not our whole life, just a small although ultimate part of our life.

Am I the odd man out, that chooses to share more than the lc, I hope not. I hope that why we carry this cause forward is because, in addition to lc, we are complete and total human beings, with life stories that are more important than lc but who define who we are.

Thank you Lisa.

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Very well said Ginny. Lisa I could not be happier for your very Amazing news. This type of progress is beyond what we "hope" for. I am so glad that Ahmed is feeling better. We all need to hang on to hope. But I can certainly understand losing your way every now and then. We are only human. Like Becky says, the monster still manage to come out, we just have to kick 'em back under the bed and muster more strength every day. It is a daily, or even hourly battle.

Thank you for sharing your thoughts, doubts and HOPES!

TAnn

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When I was in college, my father suffered a severe heart attack. There were alot of things that were also going on - my father's business was suffering under the weight of a bad economy, my younger teenager brother was acting out in school, doing drugs, and had police problems, my mother was not easily adjusting to the youngest child who was just entering kindergarten. We also had no health insurance. One day when I was walking into the house after a hospital visit, I tripped down the stairs. I said to my aunt who was staying with us at the time, that this was more than I could be handled. She told me that there would far worst things yet to handle.

I never took this message as not listening to my feelings at the time but rather to continuously look at the gifts that I have been given. Yes, I have buried that very same aunt who was so special to me, I have buried both of my parents, I have miscarried a child, and now I have Stage IV cancer. Yet, I know that there are stories out there that are far more/ traumatic worst than my own.

I have many blessings. The love of my wonderful husband and son,the gift of my siblings and inlaws,the support of many friends. A faith that is always with me. The good fortunate to be able pursue a career that has been rewarding and challenging. I have the gift of my health. I was diagnosed two years ago this week and I am still going strong. This is where I go to find my hope and courage to face each day - plus the opportunity to look in my son's precious brown eyes every morning.

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It appears that Ahmed is one of those for whom Iressa works its magic! I am so happy for your family. I have read of a number of people who had the kind of response you describe, and some of those have attained and more importantly maintained remission after a few months of Iressa use (They are still taking Iressa). I will be keeping all movable body parts crossed that Ahmed continues to respond well to Iressa, and that it works like this for a long, happy, full lifetime.

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Lisa, thank you for sharing your story with us. I am so happy for you that the Iressa is doing some good for Ahmed. I have been feeling like I have been struggling with losing hope too, so reading what you wrote brought many tears to my eyes. I realise now that I have not lost hope, but am just losing some confidence in what my being filled with hope actually achieves. That is such a nicer way to feel about it. My confidence in this will return. I am sure of that now. Thank you, thank you.

And I hope Ahmed continues to get improved results with the Iressa.

with best wishes

Jana

xxxx

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Lisa,

That is absolutely wonderful. Good for you. God is shining on you girl,

so hold on to your hope. Your numbers look so good and it is something to be happy about, it's your turn to have good news. You should be proud

of numbers like you received. Good luck and take care!

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Lisa,

We too have had the dashed hopes with some of Steve's previous tx, when things looked good briefly and then didn't last. He is also on Iressa and is doing so much better now, but I still feel like I'm holding my breath. Then I remind myself of the woman we met at Relay for Life - also Stage IV who failed to have any success with all previous tx. Two and a half years after being started on Iressa (under "Compassionate Use"), she looks like someone who has never been ill. Every day brings us closer to more answers - every day counts!

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I am on Iressa and it seems to be working for me also. I am so happy for you and yours.

ABOUT HOPE: I don't look at it as losing hope when you are preparing yourself for the next step if needed. If you had lost HOPE, you wouldn't be doing anything. I like to prepare myself as best as I can for the worse, so that when and if that should come, I won't have so far to fall. I am like my daddy; looking at the hole in the doughnut instead of the doughnut itself. I think you can have all the HOPE in the world but I, MYSELF, try to look at the down side also. Just being practical. Marion

THERE AGAIN THESE ARE JUST MY THOUGHTS

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Lisa, WONDERFUL NEWS... so happy for your family On HOPE....., I believe you did not lose it, you just prepared for the next step if there was to be one, I also make" lemonade out of the lemons..."and there can be alot of lemons before you can make the brew.. Keep the faith.... :D

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I am happy for you, Lisa, that Ahmed seems to be doing well on iressa.

The same for the rest of you on maintenance iressa.....

May you continue to do well.

The outlook on my prognosis has been "guardedly optimistic " all along. and I am still here to glory in the small treasures of life.

Keep the faith, and don't be afraid to dream of the good things....

Miracles happen every day with this damn disease.. I am one...

XOXOXOXOXOX

Prayers always,

MaryAnn

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