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Gratitude/update - Long, but what else is new?


Welthy

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Hi all,

I cannot begin to express my deep appreciation to all of my friends here who posted, pm'd, and emailed me after Tony's passing. You will never know how much this community has been my strength and hope throughout our long journey.

I realize Tony's death came as a bit of a shock to the LCSC -- it did to me too. He had his chemo on Tuesday and, although his breathing never bounced back from the Alimta nightmare, we were cruising along in our typical fashion. Counts were looking good, but I suspected a lung infection and began antibiotics at home. Wednesday evening his breathing problems escalated and he wouldn't let me take him to the hospital until I put my foot down early Friday at about 1:30 am. (I had desperately been trying to honor his wishes about no hospitalization.) We thought some heart meds, antibiotics, and more oxygen would help him rally and fix some of the other outstanding issues. I had no hospice, as he was continuing treatment, but the hospital arranged for a Dr/Nurse palliative treatment team to discuss at home care with me once he was released. His breathing calmed with a dose or two of morphine and his heart kicked back into rhythm. We thought he had finally fallen into a restful sleep. Eight hours later though, he slipped away quietly and peacefully. My entire family (daughter, sibs, in-laws, his daughter & grandchildren) were with him throughout the day holding him and talking to him. My oldest son/wife were in AZ, and my youngest couldn't bear to watch his Father die. That was okay and he was surrounded by friends during the day and prayers were being said with another minister for the boys who were gathered with my son. My brother performed a service of Commendation after Tony passed and then the family went to a quiet room for Holy Communion.

Tony survived for a little over 2 1/2 years at Stage IV with a huge tumor burden and poorly differentiated cells, not just a few random tumors here and there. He never got the "Golden Ticket" with Tarceva, just gutted it out through treatment after treatment. He had an incredible immune system and never took any supplements except his daily vitamin and some B's. He never missed chemo due to low counts. Tony was an unending source of amazement to his Doctors. He fought so hard to live and taught me much about strength and dignity. Never a complaint or boast was heard from him about how he was doing. We were just grateful to the good Lord that he had more time than we ever expected. I had this beautiful soul with me for 31 years -- longer than I had my Mother and one year shy of how long I had my Father. Tony was my life and I have been with him since I was 19. There will never be a way to fill this hole in my being.

As for me, I am still stunned and am now dealing with a lot of legal, financial, etc., etc., issues. Gak -- never knew how much stuff goes on when someone dies. It's keeping me busy though and the full impact hasn't hit me yet. We had a beautiful visitation and a funeral in a huge old church with tons of hymns (he loved singing), a pipe organ, a friend playing a violin solo, and my brother (a minister) doing the service. We used the quilt that my SIL's and I had made for Tony when he was diagnosed as the pall in church. Everything was very comforting and my home remains very soothing, because Tony is everywhere around me. He was the kind of guy who had a hand in everything that went into our home and we always decorated together.

Okay -- I'm running long. So what's in my future? I do so want to continue to help on these boards but need to find a new perspective to continue posting. I want people to have hope and I'm exploring how best to do that -- so give me a little time. My first responsibility is to my kids. They need a strong Mother to see them through this loss even though they are adults. Most importantly is finding a new life rhythm with my son who lives in our home still. I feel a strong need to work in an advocacy role for lung cancer awareness, both in memory of Tony and for my children who may be at risk. This won't happen overnight, but when the time is right, I'll contact the powers that be to see how I can be a useful volunteer for "the cause."

Thanks again to all my friends and sorry this was so long.

Debi (Welthy)

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Please don't apologize for the length of your post! I'm just glad to see you here talking about what you've been going through.

I too find myself wondering where I fit in this community now. It's so odd transitioning from the caregiving role to this new place in our lives. I feel like I don't want to scare folks here with the experiences that Joe and I had. And there's a part of me that wants to seperate myself from the 'cancer' part of my life. I guess I just want to put that segement of time on a shelf and just hold on to good memories.

Please be gentle and kind to yourself. And continue to reach out to us here on the board. You've always been a huge source of strength to many, many people. Let us carry you a little bit now.

Peace,

Nanci

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"Welthy" ...I do so want to continue to help on these boards but need to find a new perspective to continue posting. I want people to have hope and I'm exploring how best to do that -- so give me a little time. My first responsibility is to my kids...

Debi, take all the time you need, and then some. You might even do a few things that are blatantly self-indulgent -- will feel "good" and your core values will not be endangered, I assure you! When you do start to post again more regularly, I don't think you need a "new" perspective as such. Don't limit yourself to comforting the grieving, cheering the depressed, or educating the new and confused. You don't need to respond to every post in any particular category. I see your strength as that of a firm anchor in an ocean of turmoil. Pick and choose where seeds of that anchor might best be planted.

My Aloha,

Ned

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Debi, you have been a tremendous help to me and so many others on this site. My heart is broken for your loss and you definitely need to take care of yourself and your family right now. It's our turn to be there for you. Please let us know what we can do to help. I hope that when the time is right and you are ready, you'll be back here. Shelley

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Debi, as always, you know exactly what you need to do and how to execute your priorities with strength and love. I would expect nothing different from you. I have thought of you daily since Tony passed, as I'm sure so many others have. You are a beacon of light, and we've always been so blessed to have you here. I'm also thinking of your children, especially your youngest son, and wishing peace and comfort for them as they negotiate this difficult course.

Mary Colleen

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Debi,

After reading your post, this seems like a good time to tell you how very much I have admired you and appreciated you for all you have given to this family. Even when Tony was so very ill, you found time to give hope and encouragement to others. You are a very special person and a gifted person.

You take the time you need for yourself and your family , but I hope you will return here because you are needed. You don't need to look for a way to help, you are a natural . Thank you Debi for all you have given of yourself to others. God Bless you and yours.

Love,

Sue

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Debi--

Through this entire journey, you have been our role model. You have been courageous, inspirational, and truly a warrior. Your perspective is so valuable--both past and present. The fact that Tony was here for 2 1/2 years WILL continue to give people hope...I can't tell you how many times Adrian and I showed our Mom and Dad Tony's profile. Knowing Tony's story made us all feel stronger.

It's good to "hear" your voice today. Adrian and I are thinking of you and Tony a lot as we enter what may be the final stage of our journey with my Dad.

Our thoughts are with you and your family.

Best,

Leslie (posting as Adrian because I'm using my folks' computer and it automatically logs me in as my brother...)

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Debi,

Your post was hardly too long -- it was a beautiful testament to who you are, and the love that you and Tony shared. I'm so very sorry for your loss. Just looking at Tony's picture, I know I would have loved him! We've had some good PMs in the past, and if you ever need to talk one-on-one, I'm here.

As to how you fit in this community, I wondered that too. I guess it's different for everyone. I felt myself drawn back, even though I thought it would be too painful. Sometimes I'm online a lot, sometimes I just skip around and find the cancer part too difficult. You do whatever is right for you, and it doesn't matter if that changes from one hour to the next. Whatever that is, no doubt you will find that you're helping others along the way.

With love,

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Debi, you could write a book and we'd all be captivated to the ten thousandth page - your experience and wisdom are treasured gifts you've offered to us on this board.

I've prayed for you and the family every single day and continue to do so. I love and appreciate you tremendously and want to continue to offer my sympathies for your tragic loss. Be blessed.

Mitchell

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Miss ya and just glad you are as ok as ok can be under the circumstances.Still misty eyed reading this Such a Beautiful tribute!!! :(:) (((((DEbI)))))

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Debi,

We all come to this board from a different perspective. Our journeys are all unique yet bear a sameness too. I think many of us question what we really have to offer anyone here.I know I do. Let me just say that I have always said I feel so comforted from the caregivers. I don't know why, or just what it is, but there is c oomfrot knowing they are here.

I think many caregivers have much knowledge and experience to offer the folks here. I am amazed that many continue on after their loved one has passed away. I feel that is a most selfless act that is most appreciated by this poster. You will know if it is right for you to be here.....and if so when and in what capacity. I liked Ned's 'anchor' analogy. For me, you have been the voice of reason as well as one who could add some humor as well. Thanks for all you have given. May you receive back in full for that.

Do what you need to do knowing that we here will be praying for you and lending a hand to pull you through this tough time.

Kasey

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Debi,

Just be yourself and post when you can.

Go where you feel you are needed, now

it is your son at home, later somebody

else, time will tell where you are needed

and for what.

Just take care of yourself now and we

will be glad to read your posts.

xo

Jackie

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Debi,

All I can do is echo what everyone else has said. You have been a true inspiration to so many of us in this community. My daddy didn't make it 2 1/2 years but he sure wanted to and he drew strength from these message boards and from stories like your Tony's ... I don't think he ever posted himself but he was reading vigilantly. It gave him so much hope to see that Stage IV LC could be fought and hope is what he needed to get through the worst days.

I've wondered myself whether I would want to come back but I find myself drawn here even more often then before. We are all family now. Our roles and perspectives may change, but the support and love are unconditional.

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Welthy,

you already have been an important source of perspective and positive energy to so many poeple here. You are going to be a powerful advocate for a lot of people. But you must also be fair with yourself and be "cancer free" for a bit, if that is what you need.

best through these difficult, difficult times,

(The real) Adrian

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Hi Debi,

Take the time you need. You have been a rock for so many of us here even while you were going through your own difficulties with Tony. We are here for you too. I really feel for you. I think of you and many others who have lost thier spouses every time I see my dad and watch him beginning his new journey without my mom. It is heartbreaking and inspiring at the same time. Inspiring in that he is slowly finding strength he didn't know he had. I know you will too!

All my best,

Jill

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Debi,

I too admire you so much. You've been such an inspiration to me and everyone here. I wish I could find the right words to truly express that. Many thanks to you and Tony for sharing your story, your strength, and your wisdom with all of us. I wish you peace and strength in the days ahead. And come back when you can.

Hugs,

Lisa

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Glad to see you posting. I'm sure when the time is right you will continue this journey in honor of your wonderful husband. I wish you and your family much comfort and peace on this new path in life.

Take care

Dar

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Be the Mom right now!! Be the advocate later if you want. Be the mom right now. Savin an apple martini for ya whenever ya need it!! :wink:

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