I posted a few days ago about brain mets-7 was the number reported by the guy who read the MRI. Today, I met with the oncologist who does gamma knife surgery. She asked if we wanted to look at the scans and we said yes. She was very thorough and while very nice, was straight with us. She said she stopped counting after 15 tumors. I just started presenting any symptoms last Thursday! And I wasnt even going to mention this to my oncologist because I really thought this was a result of the navelbine treatment along with tykerb and having so much radiation. I have had no headaches, except a few which were not bad and settled with a tylenol. Now, talk about going numb today. I will be doing whole brain radiation. I am just really depressed ( even beyond that). I feel totally disappointed, upset beyond belief and just a whole range of feelings. My partner is supportive, talked a lot about the treatment, but I know that she is afraid as well. How could this happen so soon. I just had a clean MRI about 5 or 6 months ago and I do mean clean as a whistle. I just cannot handle this now. I know that the results are not good. I feel like all this fighting for 15 years is and has been hopeless. And I feel hopeless now. I cant cry at times and then I do. I have vision problems and now I have trouble remember how old I am, something so simple last week. There is very little supportive services here beyond the oncologists. I am just devastated and need some support, please.
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They stopped counting after 15 tumors found in my brain
- By Yasou
- Posted September 9, 2009 at 9:31 pm · 15 replies
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15 replies
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- By chainsawz
- Posted September 9, 2009 at 10:57 pm
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I know you must feel like a big monster has kicked you in the stomach. You have fought this for 15 years which tells me you are a very strong person. Do not give up hope because there is always hope. I am sending warm thoughts to you this evening. lisa
- By jojobeans
- Posted September 9, 2009 at 11:15 pm
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I am praying for you!!! Have you look into other service outside you drs? Call hospitals or hot lines?
- By frostbite
- Posted September 10, 2009 at 12:01 am
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I'm soo sorry - please don't give up. The alligator has you on the ropes but this is not the time to throw in the towel yet. The last 15 years of fighting have not been futile. You've learned a lot about yourself in those years. Now is the time to dig deep, take a breath and go pummel that alligator into submission. I'm sending positive thoughts your way.
- By sr2603
- Posted September 10, 2009 at 8:31 am
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15 years of fighting the beast - what a fighter you are. Please, NEVER give up hope. As you said, you never had symptoms till a little while ago. The whole brain irradiation will have good results and ease your symptoms for a looooooong time.
I cannot begin to understand how you feel after what you have been through, but want to give you encouragement to keep going.
Be strong.
- By cancerkicker
- Posted September 10, 2009 at 8:40 am
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I can't say much more than the others have already said.
You are a fighter.........15 years! That is amazing. Your battle is not over...........it's just a new but big road bump. Dig deep.........try to get your game face back on and know that every single one of us here are rooting and praying for you to get through this!
Sending big hugs your way!
Jessica
- By jaf
- Posted September 10, 2009 at 8:58 am
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I too can't say more than has already been said. Remember we are here for you and prayers and thoughts go out to you. You have battled this alligator for 15 years (which gives a lot of us hope) so hang in there.
- By Deanie
- Posted September 10, 2009 at 11:44 am
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Sweetheart, please know that while we can't possibly know all you are feeling, we have some idea and are hurting for and with you. The news may be devastating but it is not hopeless. Your mere survival is evidence of that. You are fortunate to have the support of a partner. Too many have to face this kind of news alone. You have a history of being a kick-ass fighter. Embrace that. Sending hugs and prayers.
- By kleighk
- Posted September 10, 2009 at 12:59 pm
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Hang in there!! We are all praying for you and sending lots of positive vibes and rainbows! I can't imagine the fear you're feeling, but I'm sending everything I can through cyberspace.
God bless you!! love, Karyn
- By sarahbf
- Posted September 10, 2009 at 5:08 pm
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It is so hard to have the wind knocked out of our sails and yet, find the strength to pick ourselves up and keep going.
I hope that you are feeling the strength and support that surround you and your partner - she will need all that she can get too! It does not seem fair (but what about this is?) that we can be feeling fine one day - and have clear scans such a short time before - only to be told that cancer is growing and flourishing.
It sucks.
- By margaret27217
- Posted September 10, 2009 at 5:49 pm
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Oh my goodness, you precious child. I'm so sorry to hear about these tumors. If there is a Hospice in your area, I would urge you to contact them. People think that Hospice is just for people who are dying, but ours locally has support and care for people just like you. I will pray for you, dear one.
love,
Margaret
- By Natada
- Posted September 10, 2009 at 8:41 pm
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I am really sorry to hear your news. Don't assume that the brain radiation won't help you, and maybe you should consider a clinical trial. I noticed a link that has trials for brain mets patients and will post it.
http://www.brainmetsbc.org/index.php?q=node/26elow.
- By TwinFlower
- Posted September 11, 2009 at 8:28 am
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I am so sorry, and feel your devastation in your words. The uncertainty of tomorrow is, unfortunately, very real for all of us who have faced the truth of our mortality. If we all lived like we are dying, what a wonderful place this would be! I found that my conversations with God, and a deeper relationship with Him, have brought me to a spiritual place that I find much comfort in. He is there for you, just ask for what you want, and it will be given. I used to ask Him to carry half of my load each day. I now ask Him to carry all of it.
Surround yourself with the people who nurture your spirit. It is in them that you will find peace, and be able to cope with the journey ahead. You already have proven you have the strength to beat this, you can do it again.
I wish you much peace,
Linnea
- By Angelvoice
- Posted September 11, 2009 at 10:10 am
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Dearest one,
Even though thing look dark...nothing is impossible with God. Turn to Him for comfort. Seek Him out in prayer. He has already given you 15 years of mercy..and believe me you are not going to die until He is ready for you... after you have fulfilled your purpose. Don,t give up hope. Keep on fighting. We love you. Smile and try to be happy despite these trying circumstances. I know it is hard..but you are a strong and courageous person! You will beat this!
Love,
Angelvoice
- By nancyc
- Posted September 11, 2009 at 11:29 am
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Yasou,
I'm truly sorry to read of your crushing news. Having had a lung biopsy as a "formality", then hearing that it WAS metastatic BC, I can understand what you're feeling.
You have been living with BC for 15 years. You say that now you feel as though it was all "for nothing". That is the opposite of the truth. By doing all that you and your partner and your doctors and nurses COULD do, you've lived for 15 years...a not inconsiderable accomplishment in the face of an incurable disease! If you are anything like me, you've had days when it seemed that cancer was all that there was for you, and days when you barely knew that you had cancer, except for pills that you were taking.
Think back to all of the special events that have happened since your diagnosis....the holidays, birthdays, vacations, beautiful sunrises and sunsets that you've shared with your loved one, and the silly little fun things in life that make it special. You've had all of those because you did your part, and the doctors have done theirs. You're a winner in that respect.
I know that brain metastasis has to be really scary. You have a new kind of treatment to go through, and none of us knows how your body will respond to it. I don't presume to know what your spiritual beliefs are, or if you even HAVE any. I'll just share a bit of what helps me.
We are NOT our bodies...they're just an expression of who we are when we're here. The "who" we REALLY are is eternal, and continues to exist and grow past our temporary vessels. When I have awful health news, I remind myself that no matter what happens to my body, I am safe. Now, I understand that that is very easy to say, but not so easy when you've just gotten news such as you just have. In my experience, my body doesn't know that I'm safe, even if I do. My body just wants to survive.
I've gotten through such times as lung mets, and diagnosis of a second (also stage 4) cancer by reminding myself that I'M still safe, (the spirit that is me) and by reaching out for help to get me through till I can recover. I've utilized the help of a cancer counselor, a psychiatrist who specialized in care of cancer patients, the BCO chat room friends I've made over five years of chatting their, and my friends and some family. Since I've moved to NC from NJ, I've also gotten enrolled with a Palliative Care/Hospice organization, and joined a Unity church. The support that I received through my early days here, 4 months after a liver biopsy/radiofrequency ablation was very important to me. They continue to support me, and I have mostly good days now with the occasional meltdown. It has taken perseverance and the help of others to get to this point. I am better for it all.
Now is about as rainy as days can get for you. THIS is the rainy day when you call in all of your chips. You and your partner need and deserve support and help now to get through the days ahead. If you haven't already, speak with your oncologist and/or his staff about what help they know of in your community. If you belong to a church or other faith-based community, call on them for help. Your network of friends would, I'm sure, be there for you. It's also good if you can be specific about what you need, so that those who are wanting to help can pick up on doing what they are best at doing. If, for example, you are new to the area where you live, or don't have a big network to turn to, contact your local newspaper and ask for help. Often, papers will write a story of someone in dire circumstances, and help from generous people in all kinds comes rolling in as a response. People, given the opportunity, often come shining through.
I wish you and your partner well through this searing time. Please take what time you can for yourselves, to love one another, appreciate your lives together, and perhaps review your old pictures and remind yourselves of all that is good in the life that you share. Blessings on your way. Nancy
- By Yasou
- Posted September 11, 2009 at 10:25 pm
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Thanks everyone. I really appreciate your words and that you took the time out of your day to post to me.
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