Is it really worth it?
I was given a choice of clinical trials- one being Gleevec and the other a very toxic phase one trial that wouldn't even work for me, just give the docs info on dosage for the next people. Not much choice there; I did ask for the Gleevec trial and had to go through genetic testing and some other routine tests to see if I would qualify. I had a CT and a brain MRI; the MRI came back with lesions present. Suffice it to say, my family and I were devastated!
Then a miracle occurred!!! The oncologist had a neuro-oncologist look at my films and he felt that the lesions were not tumors but vascular abnormalities. We were very relieved! I waited 3 weeks for the results of the genetic testing and God granted us another miracle- I beat the very long odds that I would have a rare protein mutation that made me eligible for the trial!!
A man that I had known and considered a friend for over 20 years asked me while we waited and prayed "if this was all worth it?" WOW!!! I couldn't believe the insensitivity that he showed on a day that we were expecting results and praying for God's favor. I was blown away; he and his wife have been both casual and cavalier about my cancer journey and I guess I should have known better but I just couldn't believe his attitude. This same man had a major stroke and spent 2 grueling years rehabbing from that and I thought he, of all people, should understand the will to live. I have a family to live for and am not done raising my son- he knows this, and yet, he was so insensitive that I will never see him the same way again.
I don't know how many of you have experienced comments like that ( I'm guessing quite a few)and I just wanted to let you know that I have more appreciation for the all of you everyday and every time I go through something like that. Your friendship and support are truly life-saving!! With so-called friends like that, I could end up so depressed and I can't imagine going through this without the love and support of family friends and all of you.
So, give yourselves a pat on the back for being here for everyone who needs you, for listening and sharing and for letting me do the same for you when I can. This is a journey that none of us would choose, but the courage and dignity that are revealed in all of us is such a profound and life-changing gift that I can't imagine being angry or resentful about it anymore. It is because of my friends and family that I can take whatever comes my way and still be grateful to God for the beautiful, bountiful life I have been given.
I hope you all have a peaceful, pain-free day today. You are in my prayers.
With so much love,
Hollyberry
Comments
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Genetic testing: live or frozen tissue??
There will always be insensitive people who say things so stupid that you simply cannot BELIEVE you are hearing them. I try not to let it bother me; and chalk it up to ignorance. For every fool, there's someone equally as wonderful who knows just what to say. Congratulations on those answered prayers!!! That's wonderful!
There was testing I wish I would have known to have done when I had my original surgery (and WILL have done if I ever, God forbid, have a recurrance). Please tell me more about the testing, if that isn't too personal. My understanding was that the pathology/testing would need to be done with fresh tissue, and would occur at the same time I was having surgery. I think types of testing (like for Lynch Syndrome) can be done on frozen tissue from earlier surgeries.0 -
Holly, I am sorry about your
Holly, I am sorry about your friend's comment. It was very insensitive. I am so glad about your 2 wonderful miracles. I too felt God's presence and work during my diagnosis and the days and weeks to follow. Good luck with the trial and I wish you an easy time of it with little or no side effects to shoulder. Sending prayers and blessings to you. Eil0 -
I asked myself the same question half way through my protocol.
That was back in 1981 and my oncologist persuaded me to stay the course for another year with, "We're not interested in temporary remission, we're going for cure!" He looked like he really believed it, too, which is why I stuck with it. I concluded my two-year protocol of cisplatin, bleomycin, and vinblastin on April 18, 1982 and have been cancer-free ever since.
"What does not kill me, makes me stronger."
Friedrich Nietzsche, Twilight of the Idols, 1888
Love and Courage!
Rick0 -
each second or minute it worth it
Hollyberry. There are no words that can express how happy I am that you posted today. I have been checking daily and praying that you would feel well enough to talk with us. I am sorry about your friends attitude and I suspect he is quite bitter about his life. I tend to leave those insensitive people out of my life. Most times I find they are takers and not givers. Its easier to sit around and be mad at the world rather then working towards a better world. Its a blessing that you get to have Easter with your children and husband and I hope you have many more. We can only pray that this clinical trial works. And I hope the side effects are not too rough on you. I will not pat myself on the back as I am waiting for a hug Holly. I always have this picture in my head of you and your family on vacation here. You and your family are always in my prayers and you know I love you a bunch. Slickwilly0 -
The Season of Renewalslickwilly said:each second or minute it worth it
Hollyberry. There are no words that can express how happy I am that you posted today. I have been checking daily and praying that you would feel well enough to talk with us. I am sorry about your friends attitude and I suspect he is quite bitter about his life. I tend to leave those insensitive people out of my life. Most times I find they are takers and not givers. Its easier to sit around and be mad at the world rather then working towards a better world. Its a blessing that you get to have Easter with your children and husband and I hope you have many more. We can only pray that this clinical trial works. And I hope the side effects are not too rough on you. I will not pat myself on the back as I am waiting for a hug Holly. I always have this picture in my head of you and your family on vacation here. You and your family are always in my prayers and you know I love you a bunch. Slickwilly
Much thanks to all of you for your kindness and support! I am so grateful to all of you for being such supportive friends. Even when I can't make it to the computer for weeks, when I come back from my medical odysseys, there you are! You never skip a beat- just keep on giving and loving and helping me through this brutal journey. BIG HUGS to all of you (and Slick, you know as soon as I'm able, we'll be up there to collect that hug in person!!)
I've always loved the Easter season and all that it entails- Jesus' gift of eternal life, the Earths' gift of renewed nature and all of us trying to do the same for each other. That was my second thought when my neighbor said those insensitive things; my first was why I needed Christ to do what he did for me in the first place!! I know you understand what I'm sayin'- just a human, trying to deal with other humans!
Linda, they only needed a frozen slide; they were looking for a C-kit protein. Gleevec seems to work wonders for people with this particular genetic flaw. I'm gonna believe it will work wonders for me, as my one palpable tumor has already gone down from the size of an apricot to the size of an M&M. Not bad for the first week! I do have another MRI in a couple of weeks and, as usual, am stressed about the results. If the lesions are truly mets- I'm off the trial; if not, this is supposed to be the only drug that can actually send my form of melanoma into remission. Please pray for the latter.After all, it was a neuro-oncologist that gave me hope and I doubt he's in the habit of giving out false hope, those guys being as cautious as they usually are.
Anyway, you all made my day with your kind and generous responses. And Rick ,you're right- I've asked myself the same question- just didn't think it appropriate from a friend that I supported when he was in a bad way. I suppose I'm being too sensitive- maybe battle-weary and feeling testy.But, it is a new day and I'm back to fight again. I sure didn't think that would even be a possibility.
So here I go- taking 4 pills a day (this is gonna be so much easier than all those platinum drugs and their side-effects), hoping that the profile of upset stomach and fatigue are truly all that I can expect from this new therapy. It seems almost too easy, considering all that I've endured with the last 2 chemos and 4 surgeries. If all goes well, I will beat this beast back into remission and see my son graduate from high school next year. That has been my goal since the diagnosis almost 2 years ago. I beat the 6 months they originally gave me and I'm choosing to believe that God doesn't do miracles half-way and I can make a new record for melanoma survivorship!!
Much love to all of you,
Hollyberry0 -
The scary thing about hearing it from a close friend...hollyberry said:The Season of Renewal
Much thanks to all of you for your kindness and support! I am so grateful to all of you for being such supportive friends. Even when I can't make it to the computer for weeks, when I come back from my medical odysseys, there you are! You never skip a beat- just keep on giving and loving and helping me through this brutal journey. BIG HUGS to all of you (and Slick, you know as soon as I'm able, we'll be up there to collect that hug in person!!)
I've always loved the Easter season and all that it entails- Jesus' gift of eternal life, the Earths' gift of renewed nature and all of us trying to do the same for each other. That was my second thought when my neighbor said those insensitive things; my first was why I needed Christ to do what he did for me in the first place!! I know you understand what I'm sayin'- just a human, trying to deal with other humans!
Linda, they only needed a frozen slide; they were looking for a C-kit protein. Gleevec seems to work wonders for people with this particular genetic flaw. I'm gonna believe it will work wonders for me, as my one palpable tumor has already gone down from the size of an apricot to the size of an M&M. Not bad for the first week! I do have another MRI in a couple of weeks and, as usual, am stressed about the results. If the lesions are truly mets- I'm off the trial; if not, this is supposed to be the only drug that can actually send my form of melanoma into remission. Please pray for the latter.After all, it was a neuro-oncologist that gave me hope and I doubt he's in the habit of giving out false hope, those guys being as cautious as they usually are.
Anyway, you all made my day with your kind and generous responses. And Rick ,you're right- I've asked myself the same question- just didn't think it appropriate from a friend that I supported when he was in a bad way. I suppose I'm being too sensitive- maybe battle-weary and feeling testy.But, it is a new day and I'm back to fight again. I sure didn't think that would even be a possibility.
So here I go- taking 4 pills a day (this is gonna be so much easier than all those platinum drugs and their side-effects), hoping that the profile of upset stomach and fatigue are truly all that I can expect from this new therapy. It seems almost too easy, considering all that I've endured with the last 2 chemos and 4 surgeries. If all goes well, I will beat this beast back into remission and see my son graduate from high school next year. That has been my goal since the diagnosis almost 2 years ago. I beat the 6 months they originally gave me and I'm choosing to believe that God doesn't do miracles half-way and I can make a new record for melanoma survivorship!!
Much love to all of you,
Hollyberry
is that, sometimes, it mirrors what we ourselves have been thinking. Had someone close to me asked if I thought it was all worth it at the time I was thinking about quitting chemo, instead of my doctor telling me that it was, I might have given up. Fortunately, no one gave me a push in the wrong direction. Not that I believe in all that "positive thinking" stuff, you understand. Hell, at the time, my marriage was going south and I hated my job, I had reasons to "check out", but the glimmer of hope that I could beat the "big one" lead me to believe that solutions to my other problems would present themselves in time, because, "Where there is life, there is hope!" Crucifixion followed by Resurrection
Happy Easter!
Love and Courage!
Rick0 -
Amen Rickterato said:The scary thing about hearing it from a close friend...
is that, sometimes, it mirrors what we ourselves have been thinking. Had someone close to me asked if I thought it was all worth it at the time I was thinking about quitting chemo, instead of my doctor telling me that it was, I might have given up. Fortunately, no one gave me a push in the wrong direction. Not that I believe in all that "positive thinking" stuff, you understand. Hell, at the time, my marriage was going south and I hated my job, I had reasons to "check out", but the glimmer of hope that I could beat the "big one" lead me to believe that solutions to my other problems would present themselves in time, because, "Where there is life, there is hope!" Crucifixion followed by Resurrection
Happy Easter!
Love and Courage!
Rick
There were times I said I don't know if I can do this one more time with one more round of chemo. After my husband passed it was tough. When I seen the eyes of my sons and they had already lost one parent I knew my fight has to go on. I am sure we all have days that we want to "throw in the towel." So my fight goes on and I do have some good days. Thank God I found this discussion board and wonderful people who listen no matter how we "vent" sometimes. Hope all of you have a HAPPY EASTER!!!
Prayers and Hugs
Sandy0 -
Judgement - A complicated emotion
We all do it and most of us don't do it in a mean and purposely hurtful way, it's a very complex human emotion in my books. Holly I am sorry that your 'friend' came across the way he did but my guess is that he was, as Rick pointed out, expressing his own fears in his struggles with health issues - he has thought that of himself before I betcha 'is it worth it?'. He might in fact have been trying to connect with you on a deeper level, knowing that since he experienced health issues then you probably thought the same thing in your deep dark moments - you just never truly know where people are coming from when they say such things. Add to that the situation you are in right now with the extreme hopeful and positive news that you just got and possibly anyone who said anything even remotely negative could have evoked the same feelings of hurt and bringing you down, that you experienced. Don't take this wrong, he maybe shouldn't have said that when he did - timing is everything and doesn't come easily to some, but I am not poo pooing your feelings at all. I would have been hurt too no doubt. I know that when I try not to judge someone, and it's hard sometimes for sure, I actually feel physically better for some reason - I don't feel it brings me down a much as when I get into that judgemental frame of mind - and I do, just like everyone else. For your sake try and let it go and know that he is most likely going through many things himself.
I have found that, for me anywho, the one thing I have learned through this whole wild and crazy thing called cancer is that we have to look the other way when people come off as unkind and instead look to the positive in their just being there for us when we need people around and feel for their pain which has caused them to act as they do. You can't allow people to bring you down though and if this person continues to upset you then you have the right to ease him out of your life, no question, but the way I read the posting this was a one faux pas.
We never know what someone else is going through, exactly.
I hope you have a Happy Easter Holly. Love, Blueroses.0 -
Life
Hollyberry your post with all its positives regarding the miracles that came your way reminded me of all God has blessed me with. Sometimes people such as your inconsiderate friend are placed in our path as a reminder that Yes It Certainly Is Worth It. His callus words gave you the spark to pen these words and voice how dedicated you are to the fight to survive. Lets hope for his sake his life and self image improves so that he will no longer have such thoughtless comments spew from his mouth with little or no concern for those they are aimed at.
Your miracles reminded me of one of mine that I would like to share with you on this Easter Sunday. My second battle with cancer came just 6 months after I had completed my first 6 chemos and 6 weeks of rads. I had been working our to help rebuild my arms from the damage done by cancer treatment and surgery when all of a sudden a bulge popped up in my chest just above my breast. I knew in my heart what it was, the cancer was back. I was told it was in my sentinel node and chest wall and that I was now a stage 4 and would require more chemo and rads. Well after my first chemo I came back for my exam with my onco and he looked where the bulge (cancer) had been and it was gone. He pressed hard on my chest looking for it. I asked him what he was doing and he said "looking for the tumor". I told him well the chemo killed it isn't that what was supposed to happen. He looked shocked and agreed that yes it was what was supposed to happen but hat it never happens after a single treatment! I knew then that I had been given a miracle or sorts. You keep fighting Hollyberry and I will keep praying for you.
Sending a ton of Hugs and then some,
(HAPPY EASTER)
RE0 -
it never ceases to amaze melindaprocopio said:Genetic testing: live or frozen tissue??
There will always be insensitive people who say things so stupid that you simply cannot BELIEVE you are hearing them. I try not to let it bother me; and chalk it up to ignorance. For every fool, there's someone equally as wonderful who knows just what to say. Congratulations on those answered prayers!!! That's wonderful!
There was testing I wish I would have known to have done when I had my original surgery (and WILL have done if I ever, God forbid, have a recurrance). Please tell me more about the testing, if that isn't too personal. My understanding was that the pathology/testing would need to be done with fresh tissue, and would occur at the same time I was having surgery. I think types of testing (like for Lynch Syndrome) can be done on frozen tissue from earlier surgeries.
it never ceases to amaze me that people say the things that they do!! it does hurt doesn't it? i guess we cancer patients are supposed to be immune to such things. but we are not! when things like that happen, i have to offer them up because i am unable to process them. and who wants to process negative comments. yuk! i am thinking and praying for you. peggy0 -
So GoodRE said:Life
Hollyberry your post with all its positives regarding the miracles that came your way reminded me of all God has blessed me with. Sometimes people such as your inconsiderate friend are placed in our path as a reminder that Yes It Certainly Is Worth It. His callus words gave you the spark to pen these words and voice how dedicated you are to the fight to survive. Lets hope for his sake his life and self image improves so that he will no longer have such thoughtless comments spew from his mouth with little or no concern for those they are aimed at.
Your miracles reminded me of one of mine that I would like to share with you on this Easter Sunday. My second battle with cancer came just 6 months after I had completed my first 6 chemos and 6 weeks of rads. I had been working our to help rebuild my arms from the damage done by cancer treatment and surgery when all of a sudden a bulge popped up in my chest just above my breast. I knew in my heart what it was, the cancer was back. I was told it was in my sentinel node and chest wall and that I was now a stage 4 and would require more chemo and rads. Well after my first chemo I came back for my exam with my onco and he looked where the bulge (cancer) had been and it was gone. He pressed hard on my chest looking for it. I asked him what he was doing and he said "looking for the tumor". I told him well the chemo killed it isn't that what was supposed to happen. He looked shocked and agreed that yes it was what was supposed to happen but hat it never happens after a single treatment! I knew then that I had been given a miracle or sorts. You keep fighting Hollyberry and I will keep praying for you.
Sending a ton of Hugs and then some,
(HAPPY EASTER)
RE
it is always so good to come here and read about the many miracles that take place. This is something very hard for people who do not have cancer to understand. I think because we expect miravles they happen more frequently for us. Re, I am so happy to hear your story. I think it is awesome that you got a miracle and are sharing it with us. What a great Easter story!
And Rick, your words..."where there is life, there is hope" are something my Mom always said. She said you never give up as long as there is life, there is a chance. Thank you for reminding me, Rick. It has brought back a good memory.
I also have friends who spit out anything that comes into their heads. I have learned to look the other way and if I can I keep my distance. I don't need their kind of "karma" around me. I had one friend who could not believe I had breast cancer. Then she could not believe I had ovarian. Her comments after each test were always..well they won't find anything. Well, they did. If was not ever said as a hopeful kind of remark, it was one of those..well, you never get sick, this must just be in your mind because your Mom had cancer. Well, it wasn't.
I have learned that some people fear things so much they have a hard time accepting illness and maybe even coming close to death. Everyone deals with it in their own way and maybe what we think are thoughtless remarks are just those person's fears coming out.
We all walk a path that will never be the same as anothers'. Maybe that's why those of us who have been down the cancer path have a little more tolerance and compassion when thoughtless remarks are hurtled out way. We're used to dodging "arrows".
Huga to all of you, Cindy0 -
"Options"Cindy54 said:So Good
it is always so good to come here and read about the many miracles that take place. This is something very hard for people who do not have cancer to understand. I think because we expect miravles they happen more frequently for us. Re, I am so happy to hear your story. I think it is awesome that you got a miracle and are sharing it with us. What a great Easter story!
And Rick, your words..."where there is life, there is hope" are something my Mom always said. She said you never give up as long as there is life, there is a chance. Thank you for reminding me, Rick. It has brought back a good memory.
I also have friends who spit out anything that comes into their heads. I have learned to look the other way and if I can I keep my distance. I don't need their kind of "karma" around me. I had one friend who could not believe I had breast cancer. Then she could not believe I had ovarian. Her comments after each test were always..well they won't find anything. Well, they did. If was not ever said as a hopeful kind of remark, it was one of those..well, you never get sick, this must just be in your mind because your Mom had cancer. Well, it wasn't.
I have learned that some people fear things so much they have a hard time accepting illness and maybe even coming close to death. Everyone deals with it in their own way and maybe what we think are thoughtless remarks are just those person's fears coming out.
We all walk a path that will never be the same as anothers'. Maybe that's why those of us who have been down the cancer path have a little more tolerance and compassion when thoughtless remarks are hurtled out way. We're used to dodging "arrows".
Huga to all of you, Cindy
Cindy,
As I have shared, my brother, Bob, took his own life. He stated in his note that he had no other options, and I am sure that in his mental state at the time, "other options" were not readily apparent or desirable. However, he deprived himself of the one option that would have provided more opportunity for examination -- time. By depriving himself of another day, Bob took away his only possible avenue of hope -- life!
"No one can determine another person’s limits of endurance or courage. No one can judge what another person is willing or not willing to do. Never let anyone talk you out of your dream, no matter how well meaning they might appear..." Tim Connor
http://ezinearticles.com/?Dont-Quit-too-Soon&id=259873
If Bob only knew how much I miss him.
Love life and Courage to endure it!
Rick0
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