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Lizbiz's husband has joined under the name jonrwall

jonrwall's picture
jonrwall
Posts: 10
Joined: Mar 2010

Thank you to everyone that posted their thoughts and feelings about my wife. Today it has been a week since she passed and the end was just so sudden and shocking. With the surgery she may have had 2-4 years. The side effects and fluid buildup in her body did not allow her body's immune system to work. She was in the hospital for 7 weeks. 10 dime sized tumors formed in her resected liver while she was fighting off everything else. The Dr. then gave her 3-6 months. She was taken by life-flight back to Michigan and the Drs. there informed me that she could only be kept alive via respirator and would be in a comatose state. I was given the choice between taking her off her respirator and making her comfortable or leaving her on. I am crying while typing this. I made the decision to make her comfortable. She fought on for several days and then passed with her family around her. She never regained consciousness.

I was never active on her boards but if people have any questions about chemo, hipec, or anything else I would be happy to help. No person should ever have to go through this and no caregiver should have to watch. Jon Wallner

AnneCan
Posts: 3692
Joined: Oct 2009

Hi Jon,

Thanks for taking the time to post despite all the sorrow you are going through. I, like so many others on the board, had high hopes for Liz's surgery. I am so sorry it didn't work for her. Please keep in touch; we can all help each other.

SpouseDx0108's picture
SpouseDx0108
Posts: 20
Joined: Feb 2010

I'm so sorry for what you've been through and for what your wife went through. Praying for peace to cover you.

Patteee's picture
Patteee
Posts: 950
Joined: Jul 2009

Jon

I am so glad you joined us! Speaking for myself, the ex-cancer patient, hopefully in the post-cancer stage of life- I find it VERY comforting to stay connected with the caregivers who's loved one is fighting the beast or done fighting it. It is through your eyes that I see the other half of this- and I can't tell you how helpful that has been.

She fought so hard to stay here with you and for a future with you. I don't know anyone with more courage or more determination to beat this beast! Liz lives on in all of us- her courage, fight and determination lives on in us, her battle will not be forgotten.

Sonia32's picture
Sonia32
Posts: 1078
Joined: Mar 2009

Jon,

I hope you stick around on the boards, your Elizabeth was an amazing woman. And she was lucky to have you.

Hugs
Sonia

maglets's picture
maglets
Posts: 2596
Joined: Jun 2006

Hello Jon and welcome. I think it is very kind and brave and sweet of you to stay on and offer to help....I am sure that you have knowledge and experience that will help other people and maybe we can support you too.

I still have not accepted that Elizabeth is gone...cannot hope to understand the deep feelings of loss that you must be experiencing Jon.

For now welcome and hugs

mags

sfmarie's picture
sfmarie
Posts: 605
Joined: Aug 2009

Thank you for posting and reaching out to us and being willing to answer any questions. I am sorry for your loss and am teary reading your post. I cannot imagine how hard this must be for you.
I too had high hopes for Liz and the current surgery. Many patients hope to be a candidate for cytoreduction and hipec. I know my sister is hoping to get hipec, as she has many mets to her peritoneum and liver.
While Liz was much younger when she was first diagnosed than my sister, I found her story quite similar to my sister's. My sister was diagnosed 03/09 at age 39 complaining of severe stomach cramps which landed her in the emergency room and emergency surgery to remove the tumor that perforated her colon. There they found it had already spread to the liver and peritoneum and ovaries. She has been on chemo ever since and on 2/5/10 was scheduled for a liver resection which ended up being an open/close but with another resection where they saw a blockage. It has been downhill ever since. Two weeks after that, she landed back in the hospital with tumors blocking her kidneys and liver, where she had stents placed and was in the hospital for two weeks. Needless to say, she has had the most painfully slow and painful recovery. She is back on chemo and it does not appear to be working.
Where was Liz being treated and did you consult MD Anderson at all? We have consulted Stanford, UCLA, UCSD and USC (she is currently seeing Dr. Lenz) and wonder if we need to look at MD for more answers or at least a better approach and treatments to manage the pain and help her regain weight.
You are in my prayers.

Marie

jonrwall's picture
jonrwall
Posts: 10
Joined: Mar 2010

We consulted with MD Anderson but they only seemed to want to do clinical trials. The ones they offered we either tried or were know to not work on her B-raf mutation. At the time I cannot argue against hipec. There are a lot of risks but if your options are nill, I would do it all again. I am still working on disecting what happened at Tufts, and will let you know what I find. Your sister is a very brave person and I admire her courage.

sfmarie's picture
sfmarie
Posts: 605
Joined: Aug 2009

Thank you for responding to my post. I will look into Tufts. And will keep your experience with MD Anderson in mind.

Marie

geotina's picture
geotina
Posts: 2121
Joined: Oct 2009

Thank you for posting. You are a very couragous man. I remember sitting with my sister and her children in the ICU room at Providence Hospital in Southfield while she made the most difficult decision of her life, to discontinue life support for her husband. It is a most difficult decision. Please don't ever second guess your decision. Liz fought very hard in her journey with cancer and always with hope. Although Liz is gone the memories you shared will be with you a very long time. In time you will be able to smile at the joy and memories you two shared, but it will take time.

Take care of yourself as Liz would have wanted you to do.

George and Tina
Livona, Michigan

Shayenne's picture
Shayenne
Posts: 2370
Joined: Jan 2009

It's so wonderful to see you come here and join in our family, you are a brother in cancer as Liz was our sister in cancer, caregivers included! we are all family, and glad you joined. This was difficult for me to hear about Liz, as I also really cried, and just was in shock that she went so fast, I didn't even know she was on a respirator, I can't imagine what happened, you think you go into that surgery to get better, not to die. I always think to myself if I would actually want a resection, and I don't think I would. I'm scared of it, seems to make people worse.

I know your decision to make her more comfortable was a hard one, but to me, it's the right one. I wouldn't even want to live in a comatose state on a respirator for the rest of my life. What kind of life would that be? but really, don't feel guilty about letting her go, she's an angel, and a very beautiful one at that. We played our Farmville together, and I really miss her here. I'm still shocked, and think about her. You know she is always with you in heart, spirit and soul, and will be joined again.

Please come back to talk, and let us know what is going on with you and the family, and if you find anything out about what really happened over there at Tufts, I'd love to know.

Hugsss!
~Donna

lisa42's picture
lisa42
Posts: 3661
Joined: Jul 2008

Hi Jon,

I know Elizabeth will live on in the hearts of many here on the board and of course with you and the others who knew and loved her. I'm glad you decided to join thi board of caring and very supportive people.
Take care and God bless,

Lisa

dianetavegia's picture
dianetavegia
Posts: 1953
Joined: Mar 2009

Several times in the last week, I've gone to look at Elizabeth's picture on her Facebook. I'm just heartbroken over her death. I am so glad you felt led to join us and are willing to share information.

Like Lisa said, Elizabeth lives on in our hearts.

Diane

Kathleen808's picture
Kathleen808
Posts: 2361
Joined: Jan 2009

Jon,
I too was just heart broken to hear of Liz's passing. Thank you for being willing to give to others in your time of sorrow. We will be here for you and provide you with any support we can.

Aloha,
Kathleen

Fight for my love
Posts: 1530
Joined: Jun 2009

Thanks for being here even after you have been through so much.I am a caregiver for my husband.Reading your post brought tears to my eyes.I can understand the sorrow and the pain,plus shock you are having now.I pray the peace for you and your family.Take care.

tootsie1's picture
tootsie1
Posts: 5056
Joined: Feb 2008

Jon,

I'm glad you've decided to join us. You've been through so mcuh as a caregiver, and I'm just so sorry for your loss.

You're very right that nobody should have to go through this.

*hugs*
Gail

jonrwall's picture
jonrwall
Posts: 10
Joined: Mar 2010

Thank you all for the sensitive and thoughtful comments. Liz talked about the people on this site and how helpful they where. She also mourned the losses of those who could not survive this horrible disease. I cannot imagine what the cancer battle would be without the caregiver being there to help. I know there are people out there that, for whatever reason, have to go it alone.

Recently I have began to question the existence of god (don't know if there is a separate discussion for this.) To give me my wife and to take her away so soon seems cruel. I was raised catholic but have not attended church in quite awhile. I just wish I could be sure she was in heaven, though I have yet to receive a post card:) I just cannot wait till I can see her again, and often imagine what it is going to be like.

geotina's picture
geotina
Posts: 2121
Joined: Oct 2009

I am so sorry you are hurting so deeply. Liz fought the hardest she could. Since you asked there is a spirtuality board. Just go through the list of discussion boards and it down near the bottom. Just start typing what is on your mind, thats all you need to do. I have looked at this board several times and personally, my opinion only, they will be of much assistance to you in this special time of need. Take care. No matter what, patients and caregivers, everyone is family and when one family member hurts, we all hurt. Tina

Shayenne's picture
Shayenne
Posts: 2370
Joined: Jan 2009

I'll even check out the Spirituality Board with you, I've posted there before as well. I was also raised Catholic, but don't go to church anymore. I do believe in a creator, whether it be God, Buddha or whatever, but I know we just don't end, I seen and heard from several deceased relatives. Maybe I'm just weird?

Hugsss!
~Donna

jonrwall's picture
jonrwall
Posts: 10
Joined: Mar 2010

I have seen some things as well. I was not going to share this but what the heck. Last week I was lying in bed, thinking about Liz. I had my arms above my head, against the wall. I felt fingers go inbetween mine, like when you hold hands with someone while your walking. I knew it was Liz and found comfort in that. I have asked (greedily) for more signs, but none have come that I have noticed. I know it is weird, but I found it made me feel better.

dmdwins
Posts: 453
Joined: Aug 2008

I have had many signs that I feel are from God over the years..especially during my cancer battle and the recent death of a dear friend. As you said they certainly don't come as often as we would like..but they do come and there will be more for you. I believe that is a way for us to be comforted and know the ones we love are in a good place as I know Liz is. My heart ahes for you. I wish you peace and many more signs.

With deepest sympathy,
Dawn

I'll share a brief story... My dear friend had a massive stroke and was on life support. His wife, children and clergy were in their home trying to make a very difficult decision. When the finally reached their decision they heard a clock chime... It was an old non-functioning clock that Rich was working to fix. The clock had not chimed before that moment and has never since..... I truly believe it was Rich comforting Bonnie to know to be at peace with her decision.

jonrwall's picture
jonrwall
Posts: 10
Joined: Mar 2010

Thank you Dawn and Donna. That gives me hope that she is in a better place.

angelsbaby's picture
angelsbaby
Posts: 1171
Joined: May 2008

I am truly sorry for your loss I have been where you are now just a short time ago and it it devastating but somehow we manage to go on i am still grieving and it will be a year on april 16th there are alot of wonderful people here that have helped me .All i hope is that Angel is ok and not in any more pain and hanging out waiting for me to come.

michelle

baldwin
Posts: 25
Joined: Dec 2008

Jon,
I have just joined this post and I would like to express my deepest condolences to you. I noticed that your wife was being treated at Mass General? My husband is also being treated there as well. He had a liver resection done on New Years Eve and his ct scan last week revealed that there are multiple nodules in both of his lungs again. We have an appointment on Wed with the onc to see if he is eligible for a clinical trial they are conductng with BRAF? Not sure what this is yet, and not sure what to be praying for.
I just want you to know that my heart goes out to you and I pray for God's healing for all.
Joanne

lisa42's picture
lisa42
Posts: 3661
Joined: Jul 2008

Hi Jon,

I am sending you a PM with some of my thoughts- I'd like to give my perspective on a couple of things, in hopes that it might possibly help you or give you something to think about.

Praying for you,
Lisa

AnneCan
Posts: 3692
Joined: Oct 2009

Jon,

Thanks for posting this beautiful photo! What a gorgeous couple! My thoughts are with you.

just4Brooks's picture
just4Brooks
Posts: 988
Joined: Jun 2009

I think you're a wonderful husband to make the choice that you did for her. She's a lucky person to have her family around her during her final moments. Now she's needed in heaven and she'll never truly be gone. She'll be with you forever just look for the signs.

Brooks

Brenda3.16
Posts: 211
Joined: May 2009

Hi John and welcome. Thank you for offering to help us and answers questions for us. Hopefully we can also help you. This is an amazing group of people. They helped me through this last year since my DX.

I really admire the support that you gave your wife. She was lucky to have you by her side. I am praying that you will find peace. I lost my grandmother last week. She was 101 and had a wonderful life. It was still sad. I will miss her. She was the head of our family for many years.

Brenda

tootsie1's picture
tootsie1
Posts: 5056
Joined: Feb 2008

Joh, I pray you will have some comfort. It's such a difficult thing you're going through right now.

*hugs*
Gail

jonrwall's picture
jonrwall
Posts: 10
Joined: Mar 2010

I would like to thank everyone for the nice postings and comments. It has almost been a month since my wife crossed the bar. I still think about her everyday. Yesterday we had a family memorial at her parents house. It was hard to be there given all the memories (and pictures) of Liz. Her neices and nephews let some ballons go to honor Liz and her memories (sorry environmental people) Her 9 year old neice attached a note to her balloon for Liz to read. It was very touching and made me a little teary. It was nice to be with family, I just wish she was there too.

geotina's picture
geotina
Posts: 2121
Joined: Oct 2009

What a lovely tribute to your wife. The little ones remembering her and writing her a note although it must have been most painful for you. How are you and Liz's parents doing? I think of you and Liz often.

Tina

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