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Well, I had a fabulous post all written out explaining how we all change and our needs change and how that change in my life in particular is leading me away from Dailystrength.
It was a grand post; thoughful, inventive, and true. But alas with the convenience in writing that modern technology gives us comes also the convenience to summarily erase our finest works. How many great literary marks of genius have fallen to an untimely click of a "Favorites" link?
I wonder.
In any case, while there may again come a time where I have need of a place like this there is no doubt that others continue to need it. I support its mission to help improve the lives of all the people who come here seeking succor from lifes many difficulties. And I wouldn't have made it to here without the likes of Jeannine, Pinky, and many others who have come and gone from these pages. All the people I have called friend here are important no matter where things went.
To everyone who remains here looking for help, or more nobly to help others, I offer a quote from Shakespeare:
"Frame your mind to mirth and merriment,
Which bars a thousand harms and lengthens life."
I love you guys. =)
I'm sorry upfront for this weak moment where I'm just going to be damn needy and wallow in self-pity. It may seem odd to be writing this during a breakdown, a small one. Fortunately for me I have a private desk at work so no one has to deal with this but me.
I made an appointment to see my oncologist yesterday. August 20th was the first date that would work with my schedule (and only the second date that was available). I haven't heard anything from him since the end of the week of June 2 (whatever that was).
This can only mean that there are no options and research on this hasn't turned anything up. This, in turn, means that unless a miracle steps forward it is only a matter of time. How much time varies so widely that no one can tell. It could be next year or it could be 15 years from now. No one studied under these conditions of cancer lived longer than 17 years. Believe me I've been looking for a sign of hope on this.
Another PET scan would give them an idea of how fast or slow it is progressing. Typically this cancer moves slowly and predictably. Typically it is also among the most curable cancers. I need to buy a lottery ticket.
Next week I'll reiterate my request for a different schedule to my manager. I'm not at all concerned about the challenges he or any of my peers might have to face to accommodate my adjustment. I was previously, and that concern landed me in this shift. Now I can't help be feel like the rest of my life is literally going to be defined by work and sleep with the occasional vacation to visit with friends and family.
If I can't get him to realize how important this is I know the director of the department will (who is about to become our Vice President). I also have another executive Vice President who is aware of my condition and has already said that if there's anything he can do to help to come see him. I intend that to be the last resort but I'm getting to the point where I won't hesitate to take that option.
But the real reason for this breakdown is simple reality. I haven't been denying it but I've subconsciously been avoiding staring the issue in the face. And whenever I do I flinch. Nothing reduces all the power in the universe to the euqivalent of a rusty penny lying in the middle of the street like facing a hopeless situation and feeling helpless to do anything about it.
We're all going to die someday. For most of you (hopefully all of you) it will be after a very long and very happy life. It's a defeating experience to be able to wake up in the morning and know what the relative chance that I might die this year is, and to know that each year that chance goes up sharply.
Maybe I'll go home and find a dark, quite corner and contemplate nothing at all for a while.
I made an appointment to see my oncologist yesterday. August 20th was the first date that would work with my schedule (and only the second date that was available). I haven't heard anything from him since the end of the week of June 2 (whatever that was).
This can only mean that there are no options and research on this hasn't turned anything up. This, in turn, means that unless a miracle steps forward it is only a matter of time. How much time varies so widely that no one can tell. It could be next year or it could be 15 years from now. No one studied under these conditions of cancer lived longer than 17 years. Believe me I've been looking for a sign of hope on this.
Another PET scan would give them an idea of how fast or slow it is progressing. Typically this cancer moves slowly and predictably. Typically it is also among the most curable cancers. I need to buy a lottery ticket.
Next week I'll reiterate my request for a different schedule to my manager. I'm not at all concerned about the challenges he or any of my peers might have to face to accommodate my adjustment. I was previously, and that concern landed me in this shift. Now I can't help be feel like the rest of my life is literally going to be defined by work and sleep with the occasional vacation to visit with friends and family.
If I can't get him to realize how important this is I know the director of the department will (who is about to become our Vice President). I also have another executive Vice President who is aware of my condition and has already said that if there's anything he can do to help to come see him. I intend that to be the last resort but I'm getting to the point where I won't hesitate to take that option.
But the real reason for this breakdown is simple reality. I haven't been denying it but I've subconsciously been avoiding staring the issue in the face. And whenever I do I flinch. Nothing reduces all the power in the universe to the euqivalent of a rusty penny lying in the middle of the street like facing a hopeless situation and feeling helpless to do anything about it.
We're all going to die someday. For most of you (hopefully all of you) it will be after a very long and very happy life. It's a defeating experience to be able to wake up in the morning and know what the relative chance that I might die this year is, and to know that each year that chance goes up sharply.
Maybe I'll go home and find a dark, quite corner and contemplate nothing at all for a while.
Comments
So I couldn't sleep tonight. At least not yet. So I had a talk to myself about cancer.
I believe it's over. There's still alternative therapies I'll explore but I have the distinct impression that there aren't any additional traditional therapies left for this type of cancer. Hodgkin's is not well understood yet and is still fairly rare with only about 7,000 new cases a year and the most successful treatments only being 10 years old or less.
So I asked myself "Do I want my doctor to beat around the bush or come out with it and give it to me straight?"
I want it straigth, of course. If there's something else to do and he believes there's genuine promise in the treatment then let's have at it without delay. If he's not sure or confident about the treatment then there isn't a point to it other than flailing away in the hopes that something will work. And I detest random flailing.
So what does that mean, really? It means the only thing I really need to know is how much time have I got to cover my bucket list? Beyond that I don't know.
It's possible that my doctor may pull off some miracle and if that happens I will rejoice in my second chance. My intuition tells me that won't happen. I doubt he'd wait for another three weeks to start a new treatment if he had one available that showed true promise. And I've heard nothing from him in the past week+.
I'm genuinely not afraid to die. I didn't want it to happen this soon but (to borrow a phrase I liked) I've dined at the dinner table of life and it has been bountiful(sp). I'm not ready for my check yet but I'm prepared to pay for it when the restaurant closes for the day.
Comments
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OMG wheres Kevin? Wheres the Ironman? Baby living without knowing is probably driving you nuts.It did me yes i had cancer but it was 26 years ago its not something i talk about.But half the battle is faith.Don't you think your Doctor would have told you by now if your days were really numbered.Besides thats up to God not a Doctor.Kevin this is the first time I have put someone on here on a prayer list but you dear man are the first.I have lost enough in the last 8 months i'm not losing you.But i know how it is to mentally just give up believing in anything,but you? no way!! At least try not to and if you need to talk please know i'm here for you and will be forever love Kalei
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I can't imagine that sleep comes easy for you these days. I too have had many of these conversations with myself. Everyone talks about how physically difficult it is having cancer but you and I both know that mentally it is the toughest thing a person can go through. It would be nice to have doctors that understood. They often just focus on the physical aspect. I agree with you, the doctors really need to tell you exactly what they are thinking.
The mind body connection can also be a very powerful tool. From day 1 of this mess I always had a picture of myself celebrating my 47th birthday (I have no idea why 47 was always the number) No matter how scary things were for me I had the craziest notion that I would be around. I know you say your intuition tells you there is not much hope left but if there is life there is always hope.
Western medicine may not always be the answer. There are just too many stories of people living way past the medical expectations to give up now.
I will always be here for you.
Love, Jeannine
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Sending you positive energy to face whatever the future may have. You walk this life with grace and dignity to be along for the journey.
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Hello Kevin,
I too have be diagnosed with Cll . I have been told very little but let's wait. Well I live in Southern California and have a Doctor from Mexico who speaks in the area in which I live. He treats cancer patients with chelation treatments. I personally know some people who had Cll and it went into remission many years ago after Dr. Castillo treated them. He is located in TJ Mexico. I am going to look into his treatment. He comes highly recommended. He has a web site www.drcastillo.com e-mail eldoc@drcastillo.com. I figure what do I have to loose. I might be one of the people who responds to the treatment like others I know. The chelation treatment that he provides can not be gotten in the states because of the FDA regulations. In the states you can get a watered version Look into it it might
RichTish
Past Entries
I guess i could feel your needs. Sound asleep i wake up and theres a journal from Kevin.I always get excited because i love his journals and him too.
This is the first time i have seen this side of Kevin.His attitude has always been i'm beating this now i see a small child within scared of that monster and i want to fight that monster for him until he has the strength and mind power to kick its ass.
Kevin i know i'm stupid because when something is wrong i ignore it if its my time to go i don't want to know it. Because i wouldn't do anything different except love harder and longer.I want to be me whoever that is.The other day i asked my 5 yo granddaughter do you want gammie skinny or fat.She shocked me by saying fat i asked why,because gammie your hugs would be bigger your lap would hold two of us.So as she watched t.v. i went and stuffed my clothes with everything i could fine i could barely breathe i came out and when she saw me she screamed and laughed.I grabbed her and we hugged and tickled and kissed and wrestled.And i said how was that she said fluffy fluffy? yes like being in a cloud but i love you anyway you are gammie know why? cause your mine.And i don't know why that story came to mind.I guess its to let you know i love you when your strong or weak,when your happy or sad and even when your in that corner just wrap a blanket around yourself and let me hold you until theres a big smile on your face and lots of love in your heart and all the fears go away.I would do anything for you Kevin,just don't give up the fight i'm selfish i need you in my life Your #1 fan Kalei
kalei