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Lost Husband to GBM

KMPonder's picture
KMPonder
Posts: 102
Joined: Dec 2009

I've posted here several times in the last two years. I didn't realize that when hubby's symptoms began on August 13th, 2009 he'd die exactly two years later to the day at age 45.

My husband was such an inspiration to me in how he bravely endured three different rounds of brain cancer, mixed-germ cell (germinoma, AA and GBM). I learned as many lessons while he was sick as I did while he was well for the 22 years in between the battles. As his mother said yesterday, "He fought the battle, but he won the war!"

I hope for all of you here bravely fighting that you will never give up. Many are cured, and we never stopped believing in God's ability to heal and our earthly doctors to cure.

I learned so much from others on these boards. It was a great source of strength and information when we didn't know what the next phase held. There were many victories to celebrate and many tears to cry.

Celebrate each and every day with your loved ones fighting the good fight. Stay positive and focused on all you can do for them and yourselves. Caregiving has been my most important job and the one that will shape my life going forward. It was such an honor to do all I could for my husband to help him beat this disease. My faith reminds me that this is just our temporary home, and so my fears are few. My sadness is palpable, because he was the best thing that ever happened to me. He made my life easy, even while sick.

God bless each of you.

Kim

palmyrafan's picture
palmyrafan
Posts: 398
Joined: Mar 2011

Kim I am so very sorry to hear of the loss of your beloved husband. He fought long and hard and you were with him every step of the way.

I hope you and your family are able to find some Peace after all this time and remember your husband for the fighting spirit he truly was.

Blessings,
Teresa

KMPonder's picture
KMPonder
Posts: 102
Joined: Dec 2009

He would have made a great Marine, Teresa. :) He sure did fight hard. I'm so proud of how well he did fight, and he DID win the ultimate gift - eternal life! It's what provides me the peace I need to stay sane. (I think I'm sane.) :)

Kim

momsworld's picture
momsworld
Posts: 135
Joined: May 2010

Sorry about your husband and I will pray for you and your family so you can get through this. You are so very right, he did get the ultimate gift, eternal life. God bless and take care

cindysuetoyou's picture
cindysuetoyou
Posts: 508
Joined: Dec 2009

Dear Kim,

Your post is an incredible tribute to your husband and to your faith. Thank you for reaching out and thinking of us here on the CSN board, even in the midst of your grief.

I was just sick at heart to read that you lost your husband. I always read your posts and I was always strengthened and encouraged by your words. Today's post also encourages me, even in the sorrow. As I stand with my son David in his fight, I sometimes forget that this life is not all there is. And I want to be like you, never losing hope in healing and/or a cure for David--from God and from the doctors.

I pray that God will give you an extra measure of strength and grace for the hard days ahead. May the sweet memories of your husband and the good times that you shared bring comfort to you.....I am so sorry for your loss.

Love and blessings to you,
Cindy in Salem, OR

KMPonder's picture
KMPonder
Posts: 102
Joined: Dec 2009

Cindy,

I think of my husband's mother and how she must feel, even though her son was 45. He was still her son. She nursed him through his first tumor when he was 20/21. David is blessed to have you courageously fighting with him. I know sometimes the loneliness and heartache of this disease is mind-numbing, but never ever give up hope. I still feel Landy all around me, but I sure miss his sweet presence and always will. I suspect as I get on with life, I will always be asking what he'd want/expect of me. He was so wise and level-headed. He made my life so easy in so many ways, even when sick he didn't want to burden me. God bless him.

Peace to you.

Kim

msomawas
Posts: 22
Joined: Aug 2011

I am so sorry to hear about the loss of your husband. Your words are an inspiration to me as I am fighting the same fight with my husband now. I will keep you in my prayers.

Marty

KMPonder's picture
KMPonder
Posts: 102
Joined: Dec 2009

Marty,

See my reply below. I've lived it, so I feel I can share it. As much as what you are dealing with hurts to the core, there are beautiful moments I know you are sharing. I pray healing and peace for you both.

Kim

Tracy724
Posts: 3
Joined: Aug 2011

Kim, thank you for this post. My husband was diagnosed w anaplastic astrocytoma grade 3 in July. We have been married one year. I'm in the shock / anger/devastated page. I needed this positive post today.. I am a very spiritual person but now I Feel like our life has been shattered. I'm so sorry for your loss .. God bless you
Tracy

KMPonder's picture
KMPonder
Posts: 102
Joined: Dec 2009

Thank each of you for your kind words. This disease, no matter what kind of tumor, tugs at my heartstrings. When my hubby was diagnosed in August 2009 with three AA tumors, I felt all your same emotions. I was determined, though, he was going to beat it again, like he did of the mixed germ cell tumor in 1986/87. He really lived in those 22 years: finished college and a Masters degree, taught school for 19 years, shot doves in Argentina, went salmon fishing in Alaska, hiked the peaks of Norway (that was in JULY 2009!!)... We were blessed! He gave me that lesson of living life to the fullest. I wasn't in his life the first round of brain cancer, but I "got it" with the AAs and GBM of these last two years. Even when the GBM on the optic chiasm took his COMPLETE sight, he did NOT give up hope. He adapted. He gave me such a gift of faith and how to live when life is dealing you a tough card.

Don't feel alone. I am shattered inside, and part of me was in August 2009. If I can give you any advice, LIVE through this illness. There will be good days and bad. On the good ones, do all that he wants and more. Try to be yourself. I was such a cut-up before, and I realized Landy still wanted me to make him laugh and have joy. He got to go trout fishing with a guide in June of this year. He was totally blind, and his balance issues had begun getting much worse. He had done it in June 2010, while undergoing chemo, but he could see then. I sent him and his father, as I knew this would be their last time fishing. He had a blast. The guide compensated for his blindness (he had the casting technique) by "yipping" when a fish hit the line. It was such as successful trip for him. He even had a massage two weeks before he died! His dad's insistance. :)

I think of the movie, "Pray, Eat, Love" in the fact that I will suggest you pray, eat and love more fervently than you ever have. Don't waste time, and say all you need to say. Even if you say, "Don't you dare leave me! I need you!" Never give up hope, because healing does come, even with this disease. I've known of it too many times. Deep inside I knew this time would come for me, especially with the GBM diagnosis. Can I tell you after 10 months of treatment for the AA tumors, they were just scar tissue last October? We thought we'd beat brain cancer again! Then three weeks after, his vision started going, and it took until a craniotomy in February to find that darn GBM! Chemo didn't stop it, but he stopped the chemo. He wanted a quality of life even if it was to be short.

For me it helped to focus on the caregiving. It was HARD. I'm just 44. I buried him the day before I turned 44. I had told him the week before he died, "Don't you dare die on my birthday, or I will be mad." Well, he didn't. :) If the time ever comes, and I pray not, get hospice in your home to help. I had their help for four months, and it helped me not feel alone. My husband was able to stay here at home, his home, where he was surrounded by love and his stuff. It mattered to him and me.

Try to take it one day at a time. That's always easier said than done. Try not to look beyond what you're dealing with today. I promise as I look back on 18 years of marriage with him, there were as many lessons in the sick times as there were when he was well. I'm simply not the same, and I think that's a good thing. I've seen the absolute best in people, and I hope you will, too.

I wish your husband healing, and I wish you both peace.

Kim

Rory1987's picture
Rory1987
Posts: 122
Joined: Nov 2009

Im so sorry for your loss, your husband was a real fighter and for that he is rewarded with eternal life with God our father, in a place where there's no sickness or cancer. He was an inspiration.

May he rest in peace

Rory

4theloveofmysis's picture
4theloveofmysis
Posts: 248
Joined: Apr 2011

I am so sorry for for your loss. I have read most of your posts and your encouraging words. You both fought this war hard. May God give you a peace that surpasses understandong. Take care and let us know how you are doing.

katyana72
Posts: 5
Joined: Aug 2011

Hi Kim. I'm new to this board; however, I wanted to offer my condolences for the loss of your husband. Lossing a loved one is never easy; however, it is our faith that sustains us and sees us through difficult times such as this.

My father (67 years old) was diagnosed with GBM Grade IV in April of this year and has undergone chemotherapy, radiation therapy. On last week we found out that his tumor has grown back and is bigger than it was before his surgery. We were devastated; however, my father remains positive and in really good spirits. He's currently undergoing chemotherapy using a drug named CPT-11 and has three treatments left.

If it's not too much to ask and if it's not to painful for you, can you share with me what it was like for you and your husband toward the end of his life. I don't know anyone who has gone through this and it's difficult to find someone who can relate to what you're going through. Any advice you can offer would be greatly appreciated.

Katyana
katyana72@aol.com

Beckymarie
Posts: 358
Joined: Aug 2009

So sorry to hear of your loss. I also lost my husband to GBM. I hope you can find some form of solice and peace in the days to come.

connsteele
Posts: 232
Joined: May 2011

Sorry to hear about your loss. Our son is battling mixed AA3/GBM. It's been a real rough road, as you know. Do you mind if I asked how long your husband battled the disease? So far, our son's doc hasn't said, and our son, who is 34, hasn't asked. We are leaving that to him. On one hand, I want to get an idea of how much time we have, but on another hand, I don't. I know that no one can predict the future, including docs, so maybe it's a moot point. I really appreciate sharing with others on the site who are going through the same thing. Hope you are doing well, considering.

KMPonder's picture
KMPonder
Posts: 102
Joined: Dec 2009

My husband battled AAs, just over a year. After treatment at Duke, the PET in Oct '10 showed his three AA tumors were but scar tissue. We felt like we were really going to beat brain cancer, again. Three weeks after that, his vision started to deteriorate, and it took three months for the GBM on the optic chiasm to fully present itself. (It was not registering as a tumor in another PET, so a craniotomy was required to confirm their suspicions.) Please know that Duke said his tumors were caused by the radiation he had for his first tumor in 1987, so I think my husband was a rare bird. I know that when he completed treatment at Duke for the AAs, one doctor predicted five years for him. I think it's best, if possible, to not get caught up in statistics. Live each day as fully as you can. Brain cancer is so unique for everyone - location, size, symptoms.

I am really doing ok. Some days are easier than others. Sharing my husband's story is healing for me. He was a courageous man. He had great value on this earth, but his reward is now in Heaven.

connsteele
Posts: 232
Joined: May 2011

Your husband and my son share the same histories. Our son (age 34) was diagnosed when he was 8 with a medulloblastoma. He had surgery, for which the surgeon said he got "everything he could see", and radiation, chemo (CCNU, prednisone, vincristine. While our son had long term effects of treatment, including growth hormone deficiency, hypo-pituitary, type 1 diabetes, and some mild learning disability, he went on to lead a full life for 26 years, including living independently, out of state with a good federal job, for 11 years. Then last April our world turned upside down. He was diagnosed with several, inoperable, AA3 tumors. They all occurred in the cerebellum, where he had the highest dose of radiation when he was 8. "The circumstantial evidence is overwhelming," the doc said, "that this second round was caused by the first radiation treatments." Even before this second cancer, I always wondered if we should have refused his having the radiation when he was 8. I feel so guilty about it.
They haven't given us a timeline/prognosis. All they said was that the treatments won't make it go away, just slow things down.
Our son had 4 weeks of radiation this second time around, but the radiation doc was concerned about re-radiating the brain (radiation necrosis). So, our son only received 2/3 the usual dose for this type of cancer.
I'm wondering, did your husband have the full, standard dose of radiation the second time? I'm torn between wishing he was given the full amount, or not having any at all, as is symptoms are worse now, after the radiation, then before. But this time, it wasn't our call anyway, as he is an adult and wanted to go with the radiation.
I hope you are doing well.

KMPonder's picture
KMPonder
Posts: 102
Joined: Dec 2009

Wow...it's truly incredible the similarities of our situations. 26 years is a long time to live fully with no problems. Did you ever worry there could be damage from the radiation in between?

In Oct of 2009, we got to Duke for more radiation. It was focused radiation (mask and all) at 60 grays, I think. I kept lots of records early on, but then it got overwhelming. I can tell you we stayed at Duke, we lived in Georgia, while he got the six weeks of radiation. Each day, we'd see improvements to his "listing" as I called it. Hubby had imbalance issues due to the cerebellum tumor. Is your son having the same? I want you to feel free to e-mail me at KMPonder@aol.com. I will even be glad to contact you and talk about this. I will share our story in any way I can. I know this is hard for you, but I want to offer you hope and encouragement as well. Duke told us that Landy could have five years with the AAs, but when the GBM developed on his optic chiasm, we knew time would be shorter without another miracle.

I am doing ok. He died three weeks ago today, and this week's been the hardest. The reality of the loss is starting to sink in. Talking about him, though, even if it's about his cancer is healing for me. He was a brave warrior.

Kim

cdolive4
Posts: 34
Joined: Sep 2011

Kim - I just registered for this site, but have been reading the forum for a couple of months, and wanted to thank you for you calm, thoughtful, positive but realistic posts on many different topics. I am impressed with your kindness and sincerity, and I'm sure that many people have benefited from your comments.

My husband was diagnosed with a GBM in March 2011, and we have been on the roller coaster ride for 6 months now. He's doing very well overall, but we're aware that it's a very bumpy journey. Thanks for making it a little easier for all of us. Cindy

sadinholland
Posts: 234
Joined: Apr 2011

I am so sorry to hear about your husband. May you find peace in knowing he is in a better place and there is no sufffering or worrying there. God bless you and thank you so much for sharing your husband's journey with us.

micgrace
Posts: 131
Joined: May 2011

I am so sorry yet another person was taken away by the GBM 4. My wife lasted but a month from dx to end. I am still coming to terms with it but am remarrying in October. This disease is so insidious in the way it strikes at random, rarely shows itself until its too late, but all of us end up showing great courage in facing it and the inevitable outcome. My wife was a mere 42 leaving me a widower., a former carer and everything. It was a relief to see her finally pass on as all cognitive ability, movement and such was gone.

KMPonder's picture
KMPonder
Posts: 102
Joined: Dec 2009

I am sorry for your loss. It's tough to look back and realize how we endured as caregivers. It's tough to see our loved ones go through all they did. I always knew he'd do the same for me. I jokingly used to ask him, "You would care for me like this, if the tables were turned?!" It was a hard road, but the lessons learned are important going forward in my life - wherever that leads me.

Congrats on your new marriage!

maineladydi
Posts: 4
Joined: Sep 2011

My husband was diagnosed with a 3 cm stage IV GBM at Brigham and Women's on August 8th of this year. He had surgery on August 13th and I was told by the neurosurgeon that he was pleased by the results and he got all they he saw on post-surgical MRI. The oncologist wasn't as optimistic I'm afraid. She said she saw tumor on the post-surgical MRI. I don't understand how two physicians can give two completely different readings on the same MRI. He will be starting Temador chemo and radiation treatments in two weeks. We're terrified...

One month ago, life was normal. Now I'm being told that average life expectancy after treatment is 15 months. I don't know how I will be able to go on without him, I love him so much. I am so sorry for your loss. How do you do it and how will I? I keep praying for strength but I have never felt so alone in my life even though my family and friends have been wonderful. I am grateful for your story and I want you to know that. God bless.

DistancerunnerXC's picture
DistancerunnerXC
Posts: 44
Joined: Mar 2011

Now is the time to get a second opinion from one of the brain tumor centers..the great ones..
I don't know where you live (not that it matters) but BEFORE you start any treatments, get a 2nd chance at a 1st diagnosis...There are 20 or so great places...some include (but not all)

UCLA
MD Anderson
Duke
Cleveland Clinic
Dana Farber.....and quite a few others

UNLESS you are happy with where you are at.

KMPonder's picture
KMPonder
Posts: 102
Joined: Dec 2009

All I know is that any of us have but only today. This is indeed a challenging disease to beat, but many have. Educate yourself about all your options, and seek other opinions if you can. If you can, try to take one day at a time with this. Don't borrow trouble from tomorrow. I look back on the last two years and wonder how we managed with all the challenges, but we did. We survived each day together. We were grateful for that day, and I know my husband was not afraid. He didn't want to leave me, but he had no fear.

This disease is complicated, and we did often get conflicting opinions, especially after the GBM diagnosis. Doctors want to be hopeful, but they do need to realistically prepare you for what may come. Ask them all the questions you can to best prepare for what you can expect. Hubby and I did. They'll be honest. It's the best way to approach your treatment, with the knowledge you need to make the most informed decisions.

Honestly, my faith has played a major role. No, I do not like it that God called my husband home at 45. That stinks! He gave me sufficient grace to carry me through the toughest challenges and is here still holding me up. This week has been tender, but I know I will be ok. Thank you for letting me share. My husband's life was valuable, as is yours. Your love for each other will give you the strength to make it through whatever you may face. Peace and healing to you as you begin treatment. Hubby had no ill effects from Temodar. He took that with his AA tumors. He ate whatever he wanted and taught school on it and only missed one or two days while on the Temodar. He was tired. Fatigue was his biggest challenge, but he endured!!! Y'all will, too.

Jeannie20
Posts: 5
Joined: May 2011

Hi Kim,

I am so deeply saddened to hear about your husband’s passing; especially now in February of 2012. I haven’t visited the blog in a while but I thought about you and your husband yesterday and it broke my heart to read your post from last August.

I can’t even begin to imagine how hard it is without him. From our conversations and your descriptions it shows how brave he was and how strong of a woman he has made you. There is no doubt he is looking down from Heaven bragging about what an amazing wife you were to him.

Thank you for inspiring us all.

My boyfriend is doing well. He still does Avastin but is officially off Temodar. In November he did a brain PET scan and it came back cancer free. The tumor is still present but his doctors consider him in remission. It’s still so scary knowing the tumor is there. We have so much faith in God as you do and he will guide us through this.

Thank you again for your story and uplifting words.
I pray that your days get easier.

God bless.

KMPonder's picture
KMPonder
Posts: 102
Joined: Dec 2009

Jeannie,

I am so glad I decided to revisit these boards nearly 14 months after losing Landy. Time truly heals all hurts, although I still miss that sweet, precious man! I have had a super busy year traveling (trying to stay gone as much as possible helps), and I was so blessed to meet a wonderful man on one of my vacations! We are getting along beautifully.

It's been too hard to come here, until now. I can easily remember the stress and worry being a caregiver was, and it took many months to feel that stress leave my body. Perhaps I will never quite be the same again. It was a difficult, yet important journey. I am so glad your boyfriend is doing well. I still believe there are many great success stories, and I wouldn't have changed having that hope until the end. May he wake one day very soon to a tumor that has disappeared and will defy all doctors' explanations! It can happen!!

My sister-in-law (brother's wife) was diagnosed with thyroid cancer this summer, and after surgery they realize it has spread to the lymph nodes. While this is way too soon after losing Landy, we are remaining positive that she will have a complete cure once her iodine treatment is completed next month. We aren't taking it lightly, but we know this type of cancer has a high cure rate.

I hope Landy is proud of how I've mananged (some days better than others). He had told his father he expected me to go on with my life, be happy and he fully expected I'd remarry one day. We'll see...maybe that's next year's post. ;) He knew I wasn't good alone, but he was one-of-a-kind special. I feel a strong sense to live the last half of my life for him, too, with as much love and kindness as he gave while here.

God bless and keep you as well!

Kim

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