[id] => 1024632
[vanity_url] => Bret
[first_name] => Bret
[last_name] => Blakeslee
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You're here because you know I have cancer. I'm glad you stopped by. I do need the support. More than you can know. By nature I'm a introvert. I do have extrovert moments but mostly I keep to myself. That's left me pretty isolated now since I don't get out much anymore. So I'm trying to reach out to you in this way.
Just so I know who has stopped by would you please sign in. This is only for my information. Even the overall site doesn't read these. But I would like to know who cared enough to stop by. So sign in, please?
To get started I suppose I should offer some details.
My cancer is a B-cell, non-Hodgkin's lymphoma (bone marrow / blood cancer) called Waldenstrom's Macroglobulinemia (don't blame me I didn't name the bloody thing). It's a very rare cancer of the blood plasma itself (kind of a liquid tumor), incurable, normally very slow growing, and with a chaotic range of symptoms. In me, it has attacked my sensory and motor nerves. This causes pain in my sensory nerves and cramping in my motor nerves.
I am on significant doses of nerve deadeners and pain killers. These generally keep the pain at bay. I'm also on a treatment called IVIG (Intra-Veinous Immuno-Globulin) which goes a long way toward reversing the damage done to my motor nerves. This is the only thing that can currently be reversed.
The sensory nerves that have been killed by the antibodies attacking them are permanently gone.
IVIG may retard the advance of the damage done to the sensory nerves. This is a side-effect but one of the few welcome ones.
The only thing that affects the sensory pain (other than pain-killers) is a treatment called Plasmapheresis. This is essentially a plasma transplant. During this treatment I'm hooked up to a machine twice a week that removes the major portion of my plasma and replaces it with plasma from donors. In 5 treatments they have replaces some 98% of my plasma giving my nerves time to regenerate a little. But it's only a little and it's temporary. I need this treatment (currently) about every 6 months.
We've (my doctors & me) tried other things but nothing has had any effect. This is not uncommon for this cancer with these symptoms.
Eventually the liquid tumor will harden. When the blood plasma hardens the patient dies. This (normally) doesn't happen fast. And there are treatments that can reverse that aspect to an extent. But it will happen.
However, that could be a decade down the line because, as I said, this is a very slow growing cancer. Or I could get hit by a bus tomorrow and not have to worry about it.
I very much hope that I haven't driven you off.
As you can see I need all the support I can get. I have found, however, that some people can't deal with this. That's okay. I understand. I'm finding it hard to deal with myself. If you can't deal with it, please, don't offer platitudes. And don't offer help if you don't mean it. That just hurts both of us and there's no need for that.
But if you can deal with it. Deal with mortality. I would like to associate with you very much. I'll leave it up to you. I'm no judge - my need for real friendship is too great.
. . .
However, it looks like I might live a bit so I've decided to try to live it having fun. I managed to go to Australia to visit me cobber over there who has the same disease, diagnosed the same month and year, and who has kept me alive more than once. And I've returned the favor. Ira's understands my situation. He's there. I wouldn't take the journey with anyone else. He's a good friend.
3-18-16 - Well, I'm still alive. With a shitload of help from my immune system I'm actually beating back the cancer a bit. Maybe to the point where I could try to heal my nerves some. That would be amazing. Especially if I could stop taking a lot of the meds and, wonder of wonders, stretch out my current treatments. The current stuff gives me the flu complete with fever for a week each time I get it.
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[created] => 2014-03-29 18:42:20
[edited] => 2016-03-18 23:32:28
[updated] => 2016-03-18 23:32:28
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[notes] => 79248
[title] => Bret Blakeslee
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