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Broken hearted

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

Hello.

I don't know the purpose of posting here....maybe to vent, maybe to sort out my feelings, maybe a safe place to pour out my pain and sorrow? I used to post a lot in the brain tumor forum but since this is cancer SURVIVORS network, I feel that I shouldn't damage people's fragile hope by crying all over that forum.

My son David was diagnosed in May of 2009 with an anaplastic oligodendroglioma. A grade 3 brain tumor. He was 25 and in excellent health---an athlete. Working out and exercising was one of his hobbies. We were stunned and filled with disbelief when we heard the prognosis---3 to 5 years median survival rate. He had the same treatment protocol that a lot of brain cancer patients have---surgery (total removal of all visible tumor), radiation, then two years of chemo---Temodar taken five days each month. He felt sick and had bad headaches but he didn't complain. He went back to college, worked part time at Apple, got a lovely apartment in Portland, played basketball, golfed, rode his mountain bike---he was thriving. Until July 2011. He had two tonic clonic seizures and the MRI done in ER showed "disease progression." The tumor had returned, and it was malevolent and aggressive. It's been downhill ever since. We've had so many nightmare experiences but I won't write it all out---it would be a book.

My son is losing the battle. David is home with me and his dad, my husband of 34 years. He is totally bedridden, incontinent--in diapers. He can talk but it takes so much effort that he rarely speaks, and when he does, it's just a three or four word sentence. He has a lot of trouble swallowing. He has had at least one brain bleed, and he has times where he "zones out" and is in like a zombie state. When he's not in that state, he's totally aware of everything going on, and he knows he's in big trouble. I don't believe he has accepted the fact that he is not going to beat this cursed disease. He still wants to do chemo---even though the chemo ( carboplatin) and Avastin have contributed to his poor condition. I don't know if our oncologist will even authorize chemo any more. No more Avastin because of the brain bleed. Everyone---doctors, nurses, friends, social workers, etc --all keep suggesting calling in Hospice. We are not ready---yet.

Anyway.....I am so sick and miserable with grief, watching my son slowly spiraling downwards right before my eyes. He's fought so hard, he was (and is) so courageous---never complaining, always positive, always believing and hoping he could beat brain cancer....and I've fought so hard, with everything I had in me, researching, fighting with insurance companies, always questioning the doctors, supporting my son by believing with him that he could survive this....and none of it mattered or helped. He's going to die, and I'm so sad and so filled with grief for him. My grief is like a dark cloud that comes up from my feet and moves up to my chest and heart and squeezes my breath away, and then the tears start. My grief is an actual physical pain. I truly feel like I am dying too.

Having said all this.... I will add that David and I and our whole family are believers and we all trust God even though nothing is going the way we want or think it should go. I totally believe that when David dies, he will be in a much better, perfect place, free from all pain and sorrow. But we are stuck here in this life, and right now this life SUCKS. It could be worse, though, and I'm trying to be grateful for every good moment. We still have some good moments. Unbelievably, David wanted to go to Chuck E Cheese for his nephew's birthday party yesterday, so we all worked together and with a superhuman effort, we were able to get David into a car and to CEC. It took a lot out of David and all of us but it was worth it.

So that's my story. I have lots of pics in my Expressions area, and I've posted tons on the brain cancer boards. Thank you for letting me get this off my chest---I cried while typing this, and I feel a little better. I'll be back posting here a lot, I'm afraid. I know I write too much, but I guess no one HAS to read my posts if they are too long.

Love and blessings,
Cindy in Salem, Oregon

BenLenBo's picture
BenLenBo
Posts: 143
Joined: Feb 2012

Cindy,
My heart just goes out to you and your family at this time. David is struggling so hard to
beat this wicked cancer. Calling hospice is a very hard decision to make, do it when you feel
comfortable as a family making the call. From experience, this call can be helpful , comforting
and devastating. Hospice allows you to spend precious moments with David as a family, while his
immediate needs are being met.
You have displayed such great strength, courage and fight caring for your son, he is truly blessed to have such a great mother. Memories are being made everyday, enjoy each and every
minute. David has such a fighting spirit in him, that is just wonderful, you have to love him for that- shows his true character. FIGHT, FIGHT, FIGHT- never give up!
Your posting are a tremendous help to every household facing brain cancer or any cancer. We
all have out doubts whether or not there a better treatment option somewhere else. Each area of
the country seems to have a different protocol in dealing with this kind of cancer. I worry every
day with Benjamin, he is doing so great and were given 10 to 30 years before a possible recurrance.
ARE THEY SURE!!!!! I almost wanted it writing, stamped and approved. We didn't have the fight
with our insurance company on his treatment, seems like when Roger Maris, Mayo and John Hopkins
came up with the treatment plan, insurance didn't have a leg to stand on. Insurance should not
dictate what is covered or not covered - they do not have medical degrees- they are pencil pushers.
Cindy please remember to take care of yourself. You being healthy , will help you care
for your son. Take breaks, I'm sure he doesn't expect you to be there constantly - and will give others a chance to care for David. Expression of Love to care for those around us.
We will pray for your family, for strength and healing! May the Lord walk through you
home bring peace and happiness.

((((Hugs))))

Carol

Kristy1978
Posts: 5
Joined: Jun 2012

Oh Cindy I am so sorry that you and your son are having to face this wicked disease. I cannot even imagine what it's like to watch your child go through this. Don't feel that the fight and work you have done hasn't mattered, your strong will and commitment has obviously been passed on to your son as he is being faced with something so horrible but is continuing to battle and stay positive. Don't let the medical staff force you into hospice if you and your family are not comfortable with it. My mom was diagnosed with lung cancer on March 1, 2012 METS to the brain, spine, and bone found in May and she passed on June 20, 2012...about the last 2 weeks of her life I was her sole caregiver and all the medical staff at the hospital kept suggesting hospice, the social worker even had a hospice center calling the house. We weren't ready for hospice, I wasn't ready to give up the fight. Maybe it was denial, as I work in the medical field and know that hospice can be a wonderful and comforting outlet, but still wanted no part of it. I was able to keep mom comfortable and it sounds like you do a wonderful job caring for your son. I will keep you and your son in my prayers. I hope you find comfort and peace and may God bless you in every way.

Kristy

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

I will continue to read your posts, I don't care how long they are! I will continue to think about David everyday. You and David are wonderful examples for all of us.

with much much love,

Julia

ErinLeigh
Posts: 3
Joined: Jul 2012

Cindy, I just lost my mom this past Saturday and I am 26. I am heartbroken beyond belief, but honestly cannot imagine being in your shoes. I think my mom would much rather it be her that passed than to ever watch me go through this. I just have birth to a baby girl 10 weeks ago the thought of watching her die seems more than i could ever bear. I am glad y'all are believers. I believe as well but sometimes it seems like a waste to keep praying when everything that could have went wrong for my mom did. Please let your son know just how much he means to you. I wish I could have heard my mom tell me she loves me one more time, but I hadn't heard her voice for 4 months because of the throat cancer. I cherish the piece of paper she wrote it on. I will pray for a miracle for you and your son. He sounds like a great man.

Erin in TX

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

Hi, Erin.

I read this post and your other comment about losing your mom and how broken hearted you are. I am so sorry! I have a 26 year old daughter who just got married on 6/30, and I have a 25 year old daughter who is married and has a 2 year old and a 5 year old. She and her husband and their kids live right next door to me and my husband and David. We are very close--we do a lot together...run errands, grocery shop together, and she and her husband and kids and me and my husband all eat a lot of meals together at each other's homes. It would break her heart and be very hard on her if she didn't have me around. But I can tell you that you are when you say that your mom would rather it was her than you who passed away. I wish so much that I could trade places with my son David. I had my life...I got to do everything I wanted to do...get married, have kids, see my kids get married...but it doesn't work that way.

I tell David how much I love him all the time. I take special tender loving care of him. I believe he totally knows how important he is to me. Before he got so ill and he could still talk, he used to tell me that he was worried about how hard I was taking his condition. He always acted like he cared more about me and how hard this was on me, rather than what he was going through. A wonderful, unselfish man...I love him so.

I hope that your little baby girl is a comfort to you. And I pray that God will bring healing and peace to your heart, and that you will be able to remember your mom with joy and not feel the pain of her passing. It will take time....but I believe you will come to that place in your life. You will be able to tell your daughter about her grandma and how special she was. Your little girl will be such a blessing in your life. My daughters are my very best friends and my strongest supporters. You have a wonderful life ahead of you with your daughter. And your mom would want you to enjoy every minute of your life with your little girl.

Love and blessings and peace to you,
Cindy in Salem, Oregon

mr steve
Posts: 286
Joined: Sep 2009

Cindy,

Calling on Hospice does not mean that you are giving up. They are a great help in taking care of David. It is a hard call to make, but they are a great help in caregiving.

Hugs and Prayers
Steve

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

Hi, mr steve.

Thank you for writing to me. I read on another thread that you lost your wife. I am so sorry, mr steve. I can't even begin to imagine what you must be going through. Thank you for writing to me, even in the middle of your grieving for your wife. I'm always so touched when people who are going through their own terrible pain still take the time and make the effort to write to me and help me. Thank you for your unselfishness.

I know that it's just a matter of time until I have to make the call to hospice. I just can't do it yet. For one thing, David still wants to do chemo and he can't do chemo or any other treatments to fight the cancer and have hospice too. And David does not want hospice either. So far I have been able to take care of David. It's not easy. I hurt my back when I lifted him out of bed and put him in a wheelchair. But I do have some help...we have a great home health care company that sends a nurse out every Mon Wed Fri to check David's vitals and to touch base with me. They also send a bath aide 2x a week, and a physical therapist, a swallow therapist, an occupational therapist, and a social worker. They are all wonderful and are a huge help. I've especially bonded with the nurse who comes 3x a week...a wonderful woman about my age, and so skilled and compassionate. We also see a palliative care doctor. I believe she is somewhat similar to hospice. She also has been a huge help.

I know that we will need hospice at some point in time. I just want to hold off as long as possible.....

Thank you again for writing to me. May God give you peace and strength for these terrible days that you are going through.

Love and blessings,
Cindy

3Mana
Posts: 829
Joined: Aug 2010

Cindy,
I am so sorry for what your going through with your son. I can't begin to imagine how hard it must be. Please be strong and remember we'll always be here for your support.
I lost my husband, in March 2010 from lung cancer. He had a side effect from Avastin. It was a very rare side effect, but he hemorraged to death. I had read this could happen when we were given the papers the first time he had chemo. He only had one treatment of it and started having side effects. A week after his second one, he died. It happened so fast cause he had been fine all day and we watched TV together at night. He went upstairs at 10:00 and soon pounded on the floor. When I went up, it was already too late.
I'll say a prayer for your son and also for you to be strong. This is a great website and everyone understands what we're going through. "Carole"

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

Hello, Carole.

I'm so sorry to hear about your husband, and to hear how he died. It's bad enough to fight cancer, but then to have something that you are doing that's supposed to help him end up causing his death...the shock must have been terrible. I am so sorry for the pain you must still be going through.

When I first started posting and reading posts on CSN, I read several accounts of people having issues with Avastin. It really made me have a fear and a dread of Avastin. It was probably an unrealistic fear, blown up in my mind, but I never was able to get over how I felt about Avastin. Also, when we first learned about David's brain tumor, our NO talked about Avastin like it was the end-of-the-road treatment, a last ditch drug that he used when there wasn't much else that could be done, just to alleviate symptoms. When he put David on Avastin in January, I wept and was so distraught. Our NO then told me that Avastin is used different ways, not just near the end to relieve symptoms but he also used in conjunction with chemo, like a two-edged weapon. He wasn't using it solely to treat symptoms but to prevent blood vessels from forming to feed the tumor--starve the tumor-- and then chemo to kill the tumor. He thought that David would feel a lot better after taking Avastin, but I didn't feel like I saw that happen. I think that the combination of Avastin and chemo was working and reducing the overall mass effect, but it also seemed to take a huge toll on David. I never could tell if his deficits were from the treatments or the growing tumors. And our NO didn't know either. David would walk into the hospital for a treatment, and afterwards, we'd have to pour him into a wheelchair, and he couldn't walk or talk or feed himself, and he became incontinent for a few days after every treatment.

I will probably start another thread on the caregivers board about what deciding whether or not to continue chemo. I wonder if anyone has any insight or experience with this kind of situation--having to make it happen for my son, or to choose not to bring it up. He won't think of doing chemo on his own. I think he's trusting me to set it up when the time is right. Or maybe he just doesn't even think about it. I can't tell. I'm sure that many others have struggled with these same kinds of decisions. It's terrible.

Thank you again for writing to me. May God give you the grace and peace that you need, each and every day.

Love and blessings,
Cindy

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