Ben got his CT and MRI results today. VERY little shrinkage of tumor after two cycles of triple cocktail. New spot on Pelvic bone, most likely cancer. New spots on lungs (doesn't LOOK like cancer). I'm having a hard time processing my thoughts through the tears. Ben has lost more weight. We should have been leaving for Europe on the 19th for our "post retirement" dream - 30th anniversary (Oct 5) vacation in Italy and the Greek Isles. Instead, Ben will probably going through radiation and more chemo. Don't get me wrong, I could care less about missing the trip.
I HATE cancer and what it is doing to so many people. We all hurt so much. The pain, at times, is nearly unbearable, BUT, having all of you makes such a difference. I thank all of you for the support you have given us, and will do my best to be there for you.
Cathy
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I'm kinda lost.......Ben Update
- By cat22
- Posted September 19, 2009 at 12:51 am · 20 replies
- In Living with invasive bladder cancer
- Shared with the public
20 replies
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- Newest first
- By mendo_lady
- Posted September 19, 2009 at 1:32 am
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Cathy
I guess I am a forever romantic and would
just run off. I don't see it as giving up hope but
as living, loving and holding on.
Hope is bright shining light which keeps darkness at bay
Hope is the gentle cool breeze on a hot lazy day
Hope is to remain positive when the going gets tough
Hope is seeking more when others think you've had enough
Hope is dreaming of tomorrow
Hope is simmering under sorrow
Hope is sparkles when there are tears in our eyes
Hope is a beautiful thing - Hope keeps us together
Hope keeps all of us together.
- By Tagmike
- Posted September 19, 2009 at 1:35 am
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I don't know how to say how sorry I am Cat. I've said it so many times over the last couple of weeks that it seems to have lost all meaning. i cant remember a time in my life so filled with healing prayer for those who are hurting. The trouble with being a caregiver is watching and being with a loved one. The trouble with being the patient is watching and being with our loved ones. In both cases we're somewhat helpless as this disease takes its toll. Earlier this week my Stepdad was diagnosed with colon cancer mets on his liver. He started his first round of chemo today. Of course the prognosis is not good but we do what we can. Fortunately, his two sons both grown and married are there as is my Mom of course. I'm thinking seriously about flying out to CA to be with them. I don't know why I'm dumping this on you. You already have your hands full with Ben, Your trip to Europe sounds wonderful. One I would like to take without an Aircraft Carrier along providing the ride. I say someday. But it seems all we can be certain of is now. And in this moment all we can be sure of is that God does Love us and maybe this hurts him more than it does us, Good Night and God bless
- By cat22
- Posted September 19, 2009 at 2:06 am
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Thank you Nancy. You already know how much I think of you, and your post was absolutely wonderful.
I wasn't quite ready to move so quickly into this phase. I'm entering the "I wish I hadn't said...." or I should have done..." phase - yeah, the guilt trip.
- By lsh
- Posted September 19, 2009 at 6:58 am
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Cathy,
Oh Cathy, I am so sorry the news is not better. But,don't give up hope. Ask the doctors what "the plan" is now for a best result for Ben. I know how hard it is. There were days during Dan's transplant process that I felt like I couldn't bear it anymore. First go cry, do whatever you have to do to release the anxiety and fear...then put on your game face, pick up your sword and shield and go fight the beast. We are here for you.
Lynda
- By silgal
- Posted September 19, 2009 at 7:16 am
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Cathy, sorry to hear this news, but we are all praying for you and are here for you .. (my anniv. is oct 5 too!)
Thinking of you..... many hugs
michelle
- By YvonneM
- Posted September 19, 2009 at 7:24 am
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You are both in my prayers.
Yvonne
- By Memi
- Posted September 19, 2009 at 7:42 am
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Don't be so hard on yourself with the could have's and wish I had's, Cathy. Of course, we all have those thoughts, but it is the now that counts.
I'm praying as I write this that God will surround you with His love; I'm asking that he let you feel that love to the very center of your being and that you will be able to hold that love close throughout this heartbreaking ordeal. I'm also praying for healing of body and spirit for you and Ben.
I want so bad to help you, Cathy, but I have no power; so I am leaving you where you belong; in God's hands.
Memi
- By LadyJane123
- Posted September 19, 2009 at 8:00 am
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Prayers for the both of you
Stay strong Cathy, and don't give uphope.
- By georgiaE
- Posted September 19, 2009 at 8:14 am
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Hi Cathy,
I am so sorry that you and Ben are going through this . Ed and I just found out a week ago after having an RC in June, that Ed's bladder cancer is terminal and chemo is the only option to hopefully, extend his life. You and Ben are fortunate that this was discovered BEFORE your husband had to have his bladder removed. Ed and I thought how could the doctor's , oncologist, and surgeon have missed the fact of spread before they put him through this! Mark just had his surgery and is going through this also. Sweet Mary just lost her husband 2 1/2 weeks ago. Right before Ed's surgery, we asked the surgeon if he was going to do a CAT scan because Ed had just finished chemo and he said, no need, the cancer is contained in the bladder. My Ed starts the M-VAC treatment next thursday and we are praying for a miracle. We have been also praying for Ben, Mark, Mary and everyone else who has cancer. Every night I reach over and softly touch my Ed , thankful that I have another night with him. All we can do is pray that the chemo will at least shrink the beast long enough to find a new clinical trial that will work.
Much love,
Candon
- By balihigh
- Posted September 19, 2009 at 8:14 am
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Cathy,
My heart is filled with sadness for you and Ben. I will pray for you both.
Hugs,
Nancy
- By Karego
- Posted September 19, 2009 at 8:40 am
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We live each day to the best of our ability. Some days, we falter. You and Ben are in this struggle together. That love will get you both through whatever comes.
Relying on the medical team to help you fight is your best avenue just now. Preparing your minds is your task now. We are here to listen, love, and support you too.
Mendo Lady said it better. Living, loving, and hoping each moment of every day.
Karego
- By cat22
- Posted September 19, 2009 at 10:37 am
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Thank you all for your caring responses.
Candon: I think of you and Ed often, and yes, we are lucky that this all came out before going thru RC. Ed and Mark not only had to go through a difficult surgery, but now must face major chemo. My heart goes out to you. I pray that MVAC is the miracle you and Ed H O P E for, and that the Oncologists come up with a similar plan for Mark and Kelley. Mary, you are always in my thoughts and prayers. Time to go give Ben a big hug.....
Cathy
- By vtom
- Posted September 19, 2009 at 11:08 am
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Oh my goodness Cathy - it is so hard to hear your news. As you know many times - those little blips turn out to be just that - little meaningless blips.
Before my surgery I had 7 tests to prove that the "metabolic activity in my uterus" wasn't cancer. Even when a test came back negative - one more would be ordered - just to be sure . . . I was frustrated to be going through so many tests.
But when I read Candon's post above - I realize how grateful I am that my oncologist was diligent in requiring so many tests - just to be sure. We are fighting the insurance company right now on the medical necessity of all the tests but this is nothing compared to what Ben, Ed and Mark are going through.
I will pray for Ben's, Ed's and Mark's health care teams that they will have wisdom when selecting all future treatment and will do whatever they can to restore each of these warriors' health. May God give you, Candon and Kelley comfort and peace as you stand by your men - Veronica
- By roadrunner
- Posted September 19, 2009 at 12:14 pm
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Cathy,
I am sorry to hear the news,,,,,not what I expected and not you either I am sure,,,I wonder,,,,,how do you think he would do on the trip if you went,,,? it sounds much better than radiation or chemo,,,so I am thinking,,,,could it be worth it ,to go maybe....would delaying the treatment mean alot with his treatment plan,,,for a couple weeks,,,,,,,,I guess I am seeing you and him,,,,in Greece....???
HUGS,
Ginger
- By Kyle-MO
- Posted September 19, 2009 at 12:27 pm
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I will have you both in my prayers as well !
Kyle
- By georgiaE
- Posted September 19, 2009 at 2:04 pm
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Veronica,
I can't believe you are having to go through this with your insurance company after what you have been going through. Just show them some of these posts and they will see how much money these tests could have saved them! We are all so happy for you that you have such a great prognosis. You are way too young for it to be any other way.
Thanks for your prayers for all of us,
Candon
- By georgiaE
- Posted September 19, 2009 at 2:14 pm
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Cathy,
I was researching this morning and found that somewhere they did a trial concerning mets. Out of almost 400 patients with bladder cancer mets who have also had an RC, there was a high frequency of mets , with 46% of these mets occuring BEFORE the time of diagnosis of cancer in the first place. There is a great need for better prediction capability at time of diagnosis. Then our men wouldn't have had to go through so much unnecessary treatment.
The first doctor who saw my Ed, he said the mri showed a shadow where it looked like the cancer had already penetrated the bladder diverticulum and couldn't expect a cure. Whey did none of the brilliant doctors after him, Dr Herr at Sloan Kettering , here at Emory catch this. Did noone look at the first MRI taken at diagnosis? We as caregivers need to stay vigilant at all times and do what ever we can to keep our husbands alive. Mary's husband was talking about the next clinical trial on his deathbed, and you, Cathy , are doing a wonderful job trying to stay strong and fight the fight with Ben. It is not over until it is over, and there are always miracles out there happening every day. I would say it is our turn for one!
Love,
Candon
- By cat22
- Posted September 19, 2009 at 4:25 pm
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Candon. I feel your words. There are things that should have been further investigated long ago for Ben as well, then maybe he wouldn't have been diagnosed at T4 from the beginning. Doctors are encouraged to keep testing at a minimum, at our expense. There are a lot of things that frustrate the h@#$ out of me with regard to the medical profession, but I won't go there.....
We all will continue to fight, and yes, there are new developments every day, and I pray for one to come your way.
Love
Cathy
- By sunshine604
- Posted September 19, 2009 at 11:31 pm
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Cathy -
You must be feeling so stressed, not being able to cure Ben the way you would like to. I do hope the news gets better. Be sure you take care of yourself - he needs you.
Prayers and hugs!
Eileen
- By cat22
- Posted September 19, 2009 at 11:53 pm
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Thank you, Eileen. We are doing our best to minimize the stress, and not sweat the small stuff.
Cathy
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