In Regards to Boyce's Post, But a New Idea...

[dannysbrother]

People are really something. In some ways I can't blame them, but I suppose when I really think about it, I can. And I do.

For a long time I gave people the benefit of the doubt when it came to 'not knowing what to say' when they heard about a difficult situation. I understand that people come from different back rounds and beliefs, are raised in varying environments and deal with stress, pain and loss different ways. However, I have come to realize that there is a difference between those facts and sheer insensitivity and/or stupidity. While I can usually spot the difference, honestly, it pretty much hits me in the same way and when looking at the issue closer, both may stem place.

I love people. I believe in people. Sorry to sound like a politician (i'm NOT a politician), but I sincerely do believe. However, I guess any of my future presidential hopes will be shot if CNN digs up this post, because the truth is, I think most people are totally clueless. And I have a problem with that, because I don't like feeling that way. Boyce, you made quite a point. You're sick of hearing this statement and I couldn't agree more. I'll go one step further. I'm sick of being disappointed in people. I think this issue goes much deeper then innocent comments or 'what the statistics in Testicular Cancer show' or not knowing what else to say. It goes far beyond the realm of TC.

True, since my brother has been diagnosed I have heard different versions of the 'TC is the best kind of cancer,' 'he'll be fine, 'thank God it's TC and not something else,' probably well over 100 times. I heard it from friends, peers and colleagues. More interestingly, I heard it at the hospital, from people touched by TC and many other kinds of cancer as well. I heard it when Danny was diagnosed in Phoenix and went thru months of BEP and failed, in NY when brain tumors were found, thru radiation, when he went thru TIP and failed that too. I hear it now as danny continues this horrifying road of suffocating fear and turmoil. Of course, no one can know all that danny has been thru so I keep my response short and sweet. "Yes, that's true, TC is very curable, but Danny's is a case where reaching that point is much more difficult and we are still battling very hard."**Each time, my stomach sinks and I feel like I'm going to throw up. It's not worth going into detail, or lecturing the person or getting upset. They mean no harm. But we have to ask ourselves, what is going on with a society who deals with the pain and suffering of others so 'matter-of-factly'? Is the fact that they themselves have not been thru a similar situation an acceptable excuse? Have we become a society who makes a diagnosis or comment about one's health as if they are reciting their grocery list? Why is there a need to make things better or softer, or easier? What ever happened to the words "I'm Sorry." Is that such a hard thing to say? Despite what I myself believe, I don't want to hear that this has happened for a reason, or that God has a plan for danny and this is a part of it, or that TC is the best damn cancer you can get. I don't want an excuse for danny's suffering because there is no excuse. And I don't need the situation belittled by being told how lucky danny is.

Is it so hard to just say "I'm sorry."

I think maybe it is. To go to that place is to put yourself on the same level as the person you are attempting to console and people don't like that. It means truly empathizing with the person and acknowledging the depth of the situation. Maybe I expect too much from people, but I don't think so. We ARE human. Although many of us do not like dealing with such unpleasant things, they happen and how we deal with them indicates and shapes the kind of people we are and society we live in.

My girlfriend, who experienced kidney failure and was on dialysis during the year leading up to danny's diagnosis, (she had a transplant 1 month after danny was diagnosed) walked around for that year of dialysis with a small catheter and bandage above her chest. Everywhere we went people would stop her and ask what it was. At first we were appalled at the notion that people obviously didn't think about the nature of the question before they asked it, at a restaurant or park or Bloomingdale's. She didn't know how to react. I told her to tell people it was a fencing accident. She did, and we laughed every time while getting odd stares in return. Ask a stupid question get a stupid answer, but I guess it doesn't fix the real problem in the long run.

Is anything sacred?

One would think that if anything is sacred anymore, it should be a person's health. When did approaching another's pain become largely void of sensitivity, empathy and reason? More importantly, how do we as a society raise the level of sensitivity and respect and reverence that one anothers health deserves?

In my opinion, it must start with each individual re-examining their core values as a human being. NOT your religious values, although they are certainly precious, vital and worthy. NOT as what any political party says your values should be or what even your environment may have dictated your values to be. Is it a radical notion for us to try to look at ourselves as simple human beings and allow THAT to shape how we react to and deal with each other's pain? Who remembers Mr. Rogers? I haven't forgotten him or his message. In fact, I'm 24 years old but still stop and watch his show when I'm flipping channels and I see him on TV. I believe in people, in humanity enough to believe that we are capable of being better then we are and capable fostering a society that values each other's lives in health and more relevant to this discussion, in one's great struggle for health and life.

I know that this may seem like I am taking Boyce's original point WAY TO FAR, and I respect that opinion, but I thought i'd offer this viewpoint to you all. Everything said, I do believe I am 'preaching to the choir.' BIG TIME.

It warms my heart and gives me great hope to hear that so many of you are thinking of and praying for Danny. Thank you all so much. I really can't thank you enough.

Be well and take care,
Michael

[Margaret]

Michael,

I was amazed by you the first time I met you…sitting in the Sloan Kettering waiting room together at 3:00 am and I just could not stop crying….and you kept telling me I did not have to stop. But surprisingly I was not crying over worry for our family, I was crying because you and your dear family had touched my heart and I felt like I was not going to be able to stop crying until Danny got some good news. I realized that night that you were one of the most incredible people I had ever had the pleasure of talking to, and even today, you continue to amaze me.


Love to you and Danny.

m

[Karen]

Michael,
Wow. That was an incredibly insightful post. Danny is in my thoughts every day...as are others fighting so hard against this monster. One thing he is very lucky to have is a brother like you!
Take care,
Karen

[Fed]

Is it so hard to just say "I'm sorry."

I think maybe it is. To go to that place is to put yourself on the same level as the person you are attempting to console and people don't like that. It means truly empathizing with the person and acknowledging the depth of the situation. Maybe I expect too much from people, but I don't think so. We ARE human. Although many of us do not like dealing with such unpleasant things, they happen and how we deal with them indicates and shapes the kind of people we are and society we live in.

Michael,
I really believe you have struck a chord here not only with the folks here, but I am sure with others dealing with any sort of adversity. I recently read an article that deals with the lack of empathy with people not knowing how to react when others are in difficult situations. I particularly like the closing example about elephants grieving for their departed brethren.
As many have reiterated, Danny is very much in our thoughts, and I am grateful to know that he is surrounded by people like you.

[dannysbrother]

a danny update.

Great article Fed! The writer captures this idea beautifully and takes it to another very relevant place. I think it's and article that should be read by many.

Thanks for your thoughts and prayers everyone. It means so much.

Danny has completed 5/6 rounds of the Flavopuridol Study. The results so far are mixed but still encouraging. A recent CT scan shows that 90% of the tumors have shrunk by 2/3. There are two tumors in his lungs have grown since on the experimental regiment. This accounts for the fact that his HCG level (470,000 at the time of diagnosis) 1800 at the he started the study, made a steep drop to 450 after the first round of Flavopuridol and has been slowly rising since then. The doctors are convinced the very slowly rising HCG, now 1300, is a isolated result of the growing lung tumors. They have expressed how this is rare. In GermCell cancer, when tumors respond so well to therapy, it is unusual to have such a majority respond and a fraction remain resistant.

The Docs are now getting very creative in how they deal with this. Everything will depend on the results of a PET scan scheduled for next week. If the scan further proves the docs theory (which we are hoping and praying for) and shows cancer activity is isolated to the lung tumors they will recommend radiating the 2 tumors during a surgical procedure and 'melting' them away. After that hypothetical surgery he would need at least 4 weeks of recovery before an addition round or two of Flavopuridol. Since this is a STUDY and there is not set protocol, there is leeway in terms of how many rounds they can give him.

The hope is: after the 'melting' of the lung tumors the HCG will drop and with the help of a few extra shots of Flavopuridol, it will normalize and stay that way for several weeks. If we can get to that point, danny will finally have the surgery that could lead to remission. (Orch, RLPND, Liver, Lungs)

For now we do what we have come so accustomed to do, wait.

Thanks everybody,
-M

[jaybird]

I once was told that certain emotions cannot be sumed up in words. If you don't know what to say to someone in bad times your better off just spending time with them and not talking. Your presense alone can go a long way to help someone in the time of need.

[fuse929]

I agree with what jaybird said..........some emotions just can't be summed up in words. If I know that the person truly cares about me, I don't think there is any "good" or "bad" way for them to address my situation. If I don't know them very well, I could care less about what they say, positive or negative. If someone I came across knew all of the right things to say and do, I would feel very bad for that person, because it would be obvious that they have way more experience dealing with cancer patients then I would ever wish on anyone.

I understand completely and agree with what everyone had said about taking the burden on themselves as well and simply saying "I'm sorry," but I also see the good in someone addressing the situation with unyielding encouragement, even in the midst of the worst situations. Personally, I'm comforted more by the people who try to encourage me and tell me everything is going to be alright. Honestly, I would feel guilty if I had a ton of people feeling bad for me, or trying to sympathize with my situation. These are the cards I have been dealt, and I'm going to deal with my situation as strong as I can. I hope that my friends and family keep giving my support, but even if my situation turns around and starts going bad, I by no means want them to put their lives on hold. Encouragement and knowing that they truly care about me is all that matters, no matter how they express it.

Bobby

[dannysbrother]

I never suggested that people who care should not show their unyielding encouragement. In fact, I am saying just the opposite. I sometimes wish that strangers wouldn't have an effect on me or the people I love, but unfortunately that, in my opinion is not the case. I believe we all effect one another in some way, and my point is that I think many people don't realize how their reactions, comments and choices DO effect others. Especially those dealing and coping with a difficult or tragic situation. It is especially during these times that we REMEMBER who showed care and who didn't. Im experiencing it as we speak as is my brother and so many who dealing with struggle on this board.

When I suggested people say "I'm sorry" instead of the other comments that I've received often such as "He'll be fine, it's TC" or "It's God's plan for him" I don't mean that you should stop at just "I'm sorry" nor would I ever interpret someone saying that as them "feeling sorry for me" or pitying my brother. There is a big difference between pity and empathy. There is also a line between levity and empathy. I suppose what was trying to say in my original blabbering post is that I pray genuine empathy is not getting lost among us humans.**I see it hear on this board so I know it's not dead. Here in this place it is alive and thriving. But as we look around us, all around, I see it lacking in how people interact with each other and replaced by something else that in my humble opinion isn't the same.

I like to say "To Each His Own." It's what makes the world go round and things a little more interesting. For some, comfort is found in ways that for others it is not. This I understand and deeply respect. Yet I think it's important when showing care and comfort to truly do it for the person who needs it rather then other reasons, and think about what it is that that person really needs before you react in how it is easiest or most pleasant for you.

thanks for your posts, opinions and incredible support,
-M

[fuse929]

I like to say "To Each His Own." It's what makes the world go round and things a little more interesting.

I couldn't agree more. Well said.

[dadmo]

The Beast Is In Control

The past few days have certainly exposed some raw emotions. Someone with literary talent should accumulate some of these posts and make them available to the public. Maybe then, just maybe, they will begin to understand. This has been great but I need to beat the beast back to hell before my real fears surface. I will see you all on other threads.

[Karen]

I recently read an article that deals with the lack of empathy with people not knowing how to react when others are in difficult situations. I particularly like the closing example about elephants grieving for their departed brethren.

Fed,
Good article, but my comment to the author on "I can't imagine what you must be feeling" isn't that I don't want to think about it, but rather that having not walked in those shoes I really can't imagine all the raw emotions.

This has been a great thread. I suspect at one time or another we've all been in situations where we've blurting out something because we really didn't know what to say. I love this site because if you are worried about symptoms or newly diagnosed, a victorious survivor, a mourning spouse/parent/sibling, someone here really DOES know how you feel and wants to lend support.

[Fed]

[...] my comment to the author on "I can't imagine what you must be feeling" isn't that I don't want to think about it, but rather that having not walked in those shoes I really can't imagine all the raw emotions.

When the "I can't imagine what you must be feeling" surfaces, I find solace thinking that, like you noted, it is sincerely because they really don't understand what it is really like (case in point, the comment I made on Boyce's thread regarding my wife dismissing my fears of a relapse as nonsense).

What I do think is great is that people are letting themselves go on this thread, and this is exactly what the survivorship part of the Forum is meant to do. It reminds me of one of the meetings I had with my shrink when I was back in grad school. I once told her that every time we finished our sessions, I would always be pissed off because a lot of stuff came out; but the fact that it came out was cathartic and made me feel a lot better.

I think the most important implication of a thread like this one is that I find it reassuring that I am not alone. This has only happened one other time, actually during LIVESTRONG Day immediately before we were sent off to the Hill to do our work. The advocacy trainer instructed everyone who had beaten cancer twice to stand up. About a quarter of the people in the room stood up. Then she told people that have beaten cancer once to stand up along with everyone that had already risen. Almost everyone in the room stood up, myself included. Just looking around and being surrounded by all those survivors made me realize finally that I was not alone, and I have many fellow brethren in this journey. I can honestly say that I felt a sense of inner peace.

[emilyalex]

I had to add some of my thoughts to this discussion. Kind of deals with both Michael and Boyce's posts. I think Michael and Boyce have done a great, eloquent job of expressing thoughts on how people react to cancer. I will start by saying there are lots of wonderful people in the world. I have had a lot of support from varying sources, including people that are friends with my parents that I don't even really know. I've had invaluable support through this forum as well, and feel that everyone's concern here is extremely genuine.

I do have a problem with anyone saying a particular cancer is the "best kind to have." It's not even so much an educational issue, with people not understanding TC can be horrendous and incurable. In general, it may not be best to describe anyone's cancer as the best or easiest, etc. Just because you have an early stage diagnosis or a more curable cancer doesn't mean it won't come back, like my father's very early stage colon cancer for which he was successfully treated 2.5 years ago. He'll be on chemo indefinitely, and may only have 5-7 years now. Nothing good about that. I know people get caught up in their words and search their minds for comforting words of wisdom. Insensitive or uneducated responses usually aren't intended to be cruel. But sometimes they are. One thing I have noticed from some people (NOT all) is the underlying tone in their words, as if to say, "geez, I'm SO glad that's not me." My boss is one of those people. Whenever I talk about my husband, he can only sympathize/empathize about 5%, the other 95% is I'm glad it's not me and let me hurry out the door. I would rather he not even ask for updates, not that he does often.

The other thing, although not directly related to words but still relevant, is people's physical reactions to sickness. I don't know if any of you have had these experiences, so if not, please bear with me while I get it out. As my husband's mobility has deteriorated to the point he goes everywhere outside of the house in a wheelchair, I notice more and more how many people stare at us. I used to think they were sympathetic stares, but when people look you up and down, I don't consider that sympathetic. When we were in Indiana at the airport, and my husband had to wear a mask to protect him from other people's germs, an older couple stared at us for more than 5 minutes, with the wife whispering to the husband. I just wanted to go to her and say, "Ok, ok, I get it. We are making you uncomfortable. I'm sorry. We can't help it. It isn't going to rub off on you." Yes, it's sad for people to see a young man of only 38 in his condition. Yes, I'm sure people are trying to figure out why he is covered in dark bruises (low platelets - no, I don't beat him), why he is bloated and looks as if his feet are going to explode (steroids for brain swelling), why he doesn't understand what they say when they speak to him (because his hearing is extremely diminished after all the treatment he's had). I know I can't expect people to be mind readers, but I would rather someone come up and ask me point blank what is wrong, so at least I can explain rather than feeling like we are on display at the zoo.

I do everything possible to acknowledge that yes, he's sick, but to make life outside of home as normal as I can (not much normal at home any more with medical equipment and meds everywhere). Going to a restaurant or public place and being a spectacle is hard. I know he sees the not so discreet, "stolen" glances. Fortunately, he doesn't talk about them. I don't think my heart could handle that. His spirits are low enough already.

Back to the original topic, it probably is very difficult for people to "get on the level" and open themselves up to the amount of emotion we are all feeling while going through this battle. Maybe I'm strange, because I actually want to reach out to people and delve into the emotion and help them through the experience. I feel that being with people through the best times and the most difficult times is to make a true, deep connection, and I think I would miss out if I wasn't open to it. Perhaps this (and my husband's case) is the reason I am considering a change of careers to become a hospice social worker. It is an honor to know people, like all of you here, who have struggled or are still struggling to overcome cancer or even facing the end, while maintaining an amazing amount of dignity, strength and continued compassion for others. Because of our ability to care and be compassionate, we are blessed to know each other and help each other along in this journey. Those who cannot make that connection are truly missing out.

Sorry for the length, guess I just had a lot to say tonight.

Emily

[Russell's Mom]

unknowing

Nothing but warm and caring people here!!! Very touching. I was going to write a very mechanical post, which I will (Russell's post-op CT is ok) but found that I wanted to share here. I believe my mind is almost gone. I know it will be back, but the cumulative stress is taking it's toll. It is difficult to know what I think. As long as we are intense, (this is graphic) I shared with my oldest son the image that came to mind as I looked at how I would ever get the darkness out of me. It was of an animal chewing it's limb off to get out of a trap. my apology to anyone who has difficulty with that picture. Depression has set in and I hate it. What I do want to say is that I am touched by the amazing overall striving for connection and understanding, from each and every angle. As a nurse and also with other interactions, I have watched people react and comment and understand that fear has unkowingly overcome them. The response reflects the distance that is created so that they can hold on to the fictional picture that what they have put into place for protection will continue to work for them. By getting closer, people become too real and the threat of reality sets in. They might get cancer too. So from an emotional distance, a comment comes out. Intentions are good, but others can feel the real reaction. I hate it when it happens because I want people to be there for me, for each other and sometimes they just can't. I wish that I had answers. Maybe when my mind comes back it will carry some new information. For now, I watch Russell. He has shared that on two seperate occasions, he has had the opportunity to deal with a bald headed woman customer. he feels more than comfortable walking right up and sharing some compassion. I'm going to keep working on my words with people, but more the integrity of my feelings. thanks to all for sharing, Russell's Mom, Sharon

[Scott]

Danny has completed 5/6 rounds of the Flavopuridol Study. The results so far are mixed but still encouraging.... The Docs are now getting very creative in how they deal with this. Everything will depend on the results of a PET scan scheduled for next week. If the scan ... shows cancer activity is isolated to the lung tumors they will recommend radiating the 2 tumors during a surgical procedure and 'melting' them away.

I hope this study helps Danny and patients to follow.