CSN Login
Members Online: 5

Where is everybody???

sadinholland
Posts: 237
Joined: Apr 2011

I joined in 2010 due to my husband's Anaplastic Olio grade 3. I never see the people that were here when I joined post anymore. Several of you would follow Cindysuetoyou and it seems that everyone I was familiar with no longer post. Praying everything is going well for all of you.

BenLenBo's picture
BenLenBo
Posts: 144
Joined: Feb 2012

I was wondering the same thing, where is everyone.  My son Benjamin is doing exceptional, he is going on the 17th for another check-up.  I will be almost 2 years since he has been clean, in fact his doctor's call him BORING!  We will take borning any day.   Just a reminder, Benjamin did have the 1p19q deletions, and 99% of his tumor removed on the left frontal lobe.  He has been through 6 weeks chemo/radiation and 6 months of intensive chemo(temodar).  He was lucky,  we found the best medical team available, John Hopkins, Mayo and Roger Maris Cancer Center.  His ped/oncologist is the top 1% doctors in the USA and his Radiologist was very well published in his field.  Doctor's at RMCC, specialize one area, so they give the best to all patients, whether it is brain, breast, lung etc cancer.  They take the time to explain and answer any questions you may have or haven't thought of.  Benjamin's prognois's in enjoy a long healthy life free of cancer and with no complications at this point.  He does look wonderful, and is back to being himself in all ways. 

    This was one of the most difficult times in our lives, we are not here to bury our children.  I probably aged ten years and live with this on a daily basis.  We are heading back to normal, working, vacationing, and spending quality time with family.  Our new and first grandchild was born last August, she has been a total delight and it is great seeing her parent's in action.

    I did get a response from Cindysue about a month ago- on the Caregiver sight.  She is functioning and slowly moving forward as best as possible at this time.  I can not even image how difficult loosing a child or a spouse would be.  I have lost both my parent's , and daily I think of them.  The pain of their lost is still there after 32 years, I was 23 years old at the time, and yes, it still hurts to celebrate the holidays with only my husbands side.  My siblings are scattered about, and we see each other about once a year and have been taking destination vacations together.

    One of my biggest pet peeves at the moment are all the Cancer Fund Raisers taking place in our area for breast cancer, but very little attention is given to other forms of cancer awareness.  Big sums of money are raised in our county-where all money raised is sent to American Cancer Society. None of the money benefits individuals in our area suffering from cancer hardships (travel,motel and meals).  I am looking at setting up a yearly fund raiser to aid family dealing with expenses from cancer treatments.  Just need to work on all the paperwork and put together the right team of people.  May is Brain Cancer Month, and I am putting articles of information in local papers.  Society needs to know the symptoms of other forms of cancer and what it available for treatment options. 

    Now, how are you and your husband doing, is he still receiving clean MRI's, and hopefully functioning well on a daily basis.  Living with cancer daily really does take a toll on families as well as the person receiving treatments.  Having a great family support and friends who stick by you through it all are worth their weight in gold.  I really don't come on this site to often anymore, the news from so many of the people I communicated with has been heartwrenching.  I hope each and everyone is doing well and continue on this journey to kick this cancer's butt.  Please keep in touch, great to share and learn from one another, from those going through the same cancer fight.

Take Care!

((((HUGS)))

Carol

scorpio79
Posts: 25
Joined: Nov 2012

Its always nice to know when someone is beating this deadly cancer...My brother in law who was suffering from Oligodendroglioma Grade 3 passed away Feb this year after fighting the disease for 6 years..he was 29...I check this website once a while i dont post much ...Good luck to all

librarymom
Posts: 5
Joined: Mar 2013

Hi there.

 

I have also noticed there does not seem to be a consistent group here at this time.  There are certainly responses to posts, which is great, but not a lot of ongoing conversation.  I'd like that!

 

You said you joined in 2010 due to your husband's oligo III.  How is he doing?  How are you doing?

I was diagnosed nearly 6.5 years ago with a grade II oligodendroglioma.  At the time of diagnosis I had a subtotal resection and no futher treatment.  For 5 years I had three month MRIs to monitor the tumor and was stable.  18 months ago it was found that over the years there had been gradual growth and it was thought perhaps it was time to seek treatment.  I enrolled in a brain tumor clinical trial and every three weeks I traveled across the country to receive vaccinations.  In February I was dropped from the trial due to possible continued growth.  As immunology is so new, what is being perceived could even be immune response, there is no way to know short of surgery.   I am now seeking other treatment options such as surgery, chemo, chemo and radiation combination.  I have received recommendations from neuro-oncologists all over the country and each has his own recommendation and they all are different.  I have a life threatening blood clotting disorder which adds another level of risk to brain surgery as well.  These differences in opinion and trying to choose what approach to follow based on no consensus is very difficult.

 

I'd love to hear from other brain cancer survivors how they have come to make very important treatment decisions and deal with their ramifications.

 

 

librarymom
Posts: 5
Joined: Mar 2013

Hi there.

 

I have also noticed there does not seem to be a consistent group here at this time.  There are certainly responses to posts, which is great, but not a lot of ongoing conversation.  I'd like that!

 

You said you joined in 2010 due to your husband's oligo III.  How is he doing?  How are you doing?

I was diagnosed nearly 6.5 years ago with a grade II oligodendroglioma.  At the time of diagnosis I had a subtotal resection and no futher treatment.  For 5 years I had three month MRIs to monitor the tumor and was stable.  18 months ago it was found that over the years there had been gradual growth and it was thought perhaps it was time to seek treatment.  I enrolled in a brain tumor clinical trial and every three weeks I traveled across the country to receive vaccinations.  In February I was dropped from the trial due to possible continued growth.  As immunology is so new, what is being perceived could even be immune response, there is no way to know short of surgery.   I am now seeking other treatment options such as surgery, chemo, chemo and radiation combination.  I have received recommendations from neuro-oncologists all over the country and each has his own recommendation and they all are different.  I have a life threatening blood clotting disorder which adds another level of risk to brain surgery as well.  These differences in opinion and trying to choose what approach to follow based on no consensus is very difficult.

 

I'd love to hear from other brain cancer survivors how they have come to make very important treatment decisions and deal with their ramifications.

 

 

Coloradojoy
Posts: 1
Joined: Mar 2013

I have not posted much on this site, but have been following each of your stories.  Thank you for sharing because I have learned a great deal from each of your experiences.   It is difficult to read about those who are no longer here or the difficulties in everyday living, but these stories are extremely helpful for those of us struggling with brain cancer.  I was diagnosed with Grade II Oligodendroglioma in December 2005.  Had surgery at Duke University.  Unfortunately, I do not have the deletions, but I have been doing very well since the surgery.  MRIs every six months, I  hike around 60 miles each summer and am capable of some pretty fancy salsa movements.   My tumor is stable so we are just watching it and hoping it will just linger as it is for several more years.  I have not had any radiation or chemo.  I guess this is why I have not been very vocal on this site.  However, I did have a difficult time recovering after my surgery due to inflammation and I still battle this inflammation on a daily basis.  My goal is to never be on steroids again!  In case anyone is interested I have found curcumin and fish oil extremely helpful with this head inflammation.  The inflammation is easily aggrevated from weather patterns, I live at 5000ft and experience dramatic weather changes, so I try to stay on a low inflammatory diet and get as much fresh air as possible by hiking and weight lifting.   Curcumin seems to have a difficult time passing the blood brain barrier, but I am trying LongVida which is suppose to be more readily absorbed into the blood stream and cross the BBB per University of California in San Diego.     All i know is since I started concentrating on a low inflammatory diet and taking these two supplements I have done very well. 

Also, I am a caregiver survivor, my fiance who had lymphoma 1992, and my heart goes out to you who are caregivers or those who are dealing with grief and loss in your lives.  I was in my twenties at the time so I had the energy and spirit to push through the lingering exhaustion that came with being a caregiver.  However, the dreams are still with me.   In the year 2000 I lost my husband in a car accident and to be honest, I never thought I would enjoy life again.  So, I did not react with the same alarm most experience when they hear the news of having a brain tumor.   But, I married this wonderful loving man in 2007.  He stood by me through my diagnosis , surgery, recovery and he still married me!   I can honestly say I am the happiest woman alive.  I love waking up each day.  Of course, my bulldog, Rosemary, adds to that morning delight.  My tumor lingers in my thoughts and I do have a difficult time with verbal word recall.   Sometimes I am scared to death and other times I am extremely grateful for the moment. 

Please continue posting your experiences.  Thank you for sharing.  All my best, joy 

I_Promise's picture
I_Promise
Posts: 210
Joined: Aug 2011

Hello,

Yes, I found that our old group has gone away... unfortunately partly due to the death of so many love ones. I took an emotional break frpm this website.

Update on my baby sister (anaplastic astrocytoma Aug 2010): she is doing extremely well. She just graduated from her PhD in physics and mathematics; she runs every other day; she is in a stable romantic relationship with a man who worships her. We are lucky that she does not have any deficits from the surgery, radiation and chemotherapy. She still has MRIs every 2 months. They are stable.

I am still wanting her to be part of an immunilogical clinical trial because I don't like waiting for a possible recurrence. My life will never be normal again. I will never accept her diagnosis.

All my love to everyone,

Julia

 

 

sadinholland
Posts: 237
Joined: Apr 2011

I am so glad to hear from everyone! BenLenBo, It's great to hear the doctors are still calling your son boring! Praise God! Scorpio79, I remember reading your post about your brother-in-law's passing and giving my condolenses. I know it is still difficult for you and your family. May God give you continued strength as your are dealing with his loss. Coloradomom, you are an inspiratin. You give me hope for my husband. I pray that you continue to do well in your fight with this horrible disease. Librarymom, I am so sorry that you are dealing with a re-occurance. I pray that you will find the right treatment needed to beat this. I_Promise, Praise God! Your sister is doing very well, and enjoying life. I am constantly praying for everyone on this site. I wish everyone continued success in your fight and those of you that are fighting re-occurances, I pray for healing and strength as you go on with your battles.

 

sadinholland
Posts: 237
Joined: Apr 2011

My husband is doing ok. He is no longer working and has a bit of a short term memory problem. My biggest worry is as I read on many of these sights, it seems this thing can come back without warning and that scares me. He  has one deletion and as I read, there aren't many out there with just one. Either they have no deletions or both. I know your prognosis is better with two but does anyone know what it is with one? It saddens me that many of the people that were on this site has lost their battle. Sometimes reading these postings upsets me so that I have to take a break from this site, then for some reason I'm drawn back in. I guess I'm looking for answers for what is to come. I'm Thankful that my husband is doing so well, but yet scared because of the what if's. I know we are very blessed and I do have faith, but I am human and I do sometimes get so scared of what may happen. I am doing my best to live our lives in a normal fashion and enjoy each other and our family and try not to think about the what if's, but sometimes it is so difficult not to. Pray for me and my family, and I will continue to pray for yours! And Cindysuetoyou, if you are still on this site, I sitll think about you often and I'm praying for continued strength for you too.

 

God Bless!!

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

Thank you for thinking about me. I check this site every now and then, but not anywhere near like I used to do. Maybe once or twice a month. The last time I came here, there were so many new cases, people desperate with fear and worry...it just broke my heart. I was emotional and cryng and depressed for days. I couldn't even bring myself to post anything encouraging or hopeful. I just felt so sad and so overwhelmed about the way their lives had changed overnight. I hated to think about what their future was going to hold for them. I read some of the posts out loud to my daughter and we just sat there and cried together.

I guess I am doing better. It's hard to say "doing better" when I still feel so heartbroken about David. I don't cry all the time like I used to, and I don't try to explain how I feel and why I feel the way i do. I just say that I am okay and then I look off to the side and act stiff and uncomfortable. I have become a master at communicating without words. I have found it very easy to discourage people from talking about David or asking questions that I don't want to adress. Sometimes I want to talk about David; other times it's just too hard for me. If I don't meet people's eyes and if I act subdued and quiet, most people can tell that i am not up to talking about David and how I am doing.

I guess I am going through the different stages of grieving. Right now I am hung up on...I guess...denial? I just can't believe that this happened to David, to me, to our family. I can't believe that I lost my son. That our family is just the five of us. That I will never talk to David or see him or hear his laugh again ever in this life. I hate it and I am frustrated and angry that I can't change it. I feel like I am getting dragged backward through life by the heels....even though I don't lke what is going on, I don't have a choice and I have to get dragged through it. Maybe I have control issues or something---Idk. 

I had knee surgery on Monday. I had torn my ACL two years ago but I never got it fixed because I didn't want to be laid up when David needed me. So now that he doesn't need me any more, I went and had the operation done. They put cadavder tissue in my knee. I'll be on crutches...and off my horse...for awhile. It hurts and I'm limping around but compared to other things, it's no big deal. I cried all the time, cried when I talked to the doctors, cired when they took blood, cried when they did MRIs and EKGs and xrays etc. and had to explain it was because I lost my son and all of this reminded me of how he suffered and then died. Everyone is so very sympathetic but then they go on with their lives and I'm still here, stuck in one place, with a broken heart. 

I'm sure whiney, aren't I? I guess, overall, I am moving forward. We are expecting another grandchild in December. That will be nice. Of course, the first thing in my mind was that David will never see this newest little niece or nephew....but I am trying not to wreck the joy so I didn't say it out loud. 

I'm planning on going back to work in September. I want to stay unemployed for the summer so I can ride and do some camping trips. My husband bought a camper for me to use when I go horse camping. It's really nice and I've enjoyed putting my stuff in it and stocking it with groceries. It's nice to have something to look forward to. 

Other than that, I'm pretty much doing the same. I don't see how I will ever get  over the loss of David...I think I will just learn to live with it. My closest girlfriend, the one who lost her 13 year old son 16 years ago (David's best friend) said that she remembered it took her over 3 years before she started feeling at all better, like there were still things to live for. It is six months today for me. A half of a year. It seems like just yesterday that he was here...but it seems like years ago that we had his funeral, that he was so sick, that we were flying back and forth to Maryland....

Thank you to all of you who asked about me. I miss all of you so much, and I am always wondering about you all and hoping for the best. I'm so glad that so many of you and your loved ones are doing good. Jula, I follow Kat on FB and she looks wonderful! 

There's a few who I haven't seen on CSN recently but I think they are doing good...has anyone heard from Ashley? Or Chicken? I think Chicken's real name is Michelle. A long time ago I corresponded with a woman who went by the name "woodsymom" and I haven't seen any posts from her for a long time. Her son had the same diagnosis as David, and he'd had a recurrence too. 

Also...I miss posts from Raani. I hope she is doing okay. She lost her husband shortly before I lost David. And I have heard from Edna. She lost her beautiful daughter Sarah shortly after we lost David. She is having a hard time, but she's hanging in there. I haven't been able to get ahold of Parrish. Her daughter Gabby is fighting a recurrence too. I hope that Parrish is doing okay...has anyone heard anything from any of these guys?

Thanks again for writing. I love you guys and I really miss the support and undertanding and compassion you all showed to me in my very darkest days. May God continue to give you strength for the road you all are on. 

Love and blessings always,

Cindy

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

I too took a break from the site, its still pretty painful to go on here. This was my support through the darkest days of my life. So greatful that I found this site.

Glad to here of those of you that are doing well.

Take care

Brenda

cdolive4
Posts: 34
Joined: Sep 2011

I have also taken a break from most of the brain tumor sites - I'm still on a caregiver list and a brain research list, but realizing how many people are affected by this is just overwhelming to me.  My husband Dave passed away last June from a GBM - he had a 15 month battle.  It's amazing to think that it's been almost 10 months, and even stranger to think that soon it will be a year since he died. 

I have been dealing with all of the fallout from the last couple of years - financial, emotional, physical, etc.  I thought I had sold our house in Texas, but the sale just fell through, so I'm starting over with that.  In the meantime I have moved to Utah and am starting (slowly) to build a life here.  It's still so hard to realize that this is MY life now, not our life, and in some ways it's nice to be able to just make a decision about things (like buying a purple couch), but in others it's so strange to not have someone to talk to about things.  

My kids have been good, but are definitely moving on with their own lives in positive ways.  My daughter is about to graduate from BYU in a few weeks (yay!), and my son and daughter-in-law had our first grandchild 7 months ago, so that's been a joyful yet bittersweet thing to celebrate.  They named him after my husband, and it still surprises me to see his name written out.

I finally got a monument ordered for Dave, and we are going to have a family reunion over Memorial Day (our 29th anniversary) and visit the cemetery to see it.  It was really hard to order something which would also have my name on it - it's just strange to me to see my name on a grave marker when I'm still here, but we decided to order a bench rather than a traditional headstone, and I think that will feel better.

I think of each of you often and wish you well in whatever stage of the journey you are in - I think things like the bombings yesterday in Boston remind us that we are all bound together in common humanity, and John Donne said it well in this poem - 

No Man Is An Island

No man is an island,
Entire of itself.
Each is a piece of the continent,
A part of the main.
If a clod be washed away by the sea,
Europe is the less.
As well as if a promontory were.
As well as if a manor of thine own
Or of thine friend's were.
Each man's death diminishes me,
For I am involved in mankind.
Therefore, send not to know
For whom the bell tolls,
It tolls for thee. 

John Donne
One of the things which I've been grateful for on this journey is that we haven't been left alone - not by God, and not by one another, and that's a blessing to all.  Thanks for the support and shared humanity. CindyO
Subscribe with RSS
About Cancer Society

The content on this site is for informational purposes only. It is not a substitute for professional medical advice. Do not use this information to diagnose or treat a health problem or disease without consulting with a qualified healthcare provider. Please consult your healthcare provider with any questions or concerns you may have regarding your condition. Use of this online service is subject to the disclaimer and the terms and conditions.

Copyright 2000-2014 © Cancer Survivors Network