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  Bret Blakeslee
Bret Blakeslee

MyLifeLine Stories of Inspiration and Hope

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Whether you’re a newly diagnosed cancer patient, caregiver, or loved one, discover insights that inspire through shared wisdom that comes from having ‘been there.’

My Story

Last updated: Thursday, June 6, 2019

Hi Folks,

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.

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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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2019-06-05 --- Still around.  You'll find i tend to write when i'm down rather than when i'm up.

So here's what happened.  The antibodies-turned-antigen continued to attack my nerves.  they said it wouldn't likely go into my nerves.  it went into my nerves.  they said it wouldn't go into my motor function in my nerves.  that's where it went next.  to told my hem-onc i'd reached my limit.  he suggested a couple of rounds of Rituximab (actually he suggested i do rounds until i felt better [or worse].  In the event, it only took (20) two rounds.)  Rituximap is a chimericly (mouse/human) sourced, CD20 targeting, engineered monoclonal antibody with three major independent mechanisms of cancer treatment (1) one, antibody dependent cellular cytotoxicity (ADCC), (2) two, complement mediated cytotoxicity (CMC),  and (3) three, apoptosis (cyto-self-toxicity).

As i said it only took 2.  the first (merry-go-)round killed the cancer back to a point it was no longer advancing.  the second (merry-go-)round actually made me feel even better.  didn't know that  was possible.  The other shoe is rituximab didn't target the cancer for my waldenstrom's partner on the gold coast.  so he had to do the whole enchilada, including doxorubicin.  Damn good thing he emigrated all those years ago.  he's getting over open-heart that was actually for genetic valve problems.  still it was touch n go there for a bit.  for both of us.

So after a time i found myself on a very tall mesa.  started tossing the meds.  I reduced the morphine from 1800 mg to 600 myself.  they changed the laws.  i could no longer get morphine in anything like that quantity so i had to quit.  i thought I was doing the right thing by checking myself into a hospital to detox the rest of the way.  maybe i was.  but i could have found someone to reduce me slowly rather than cold turkey with subutex.  i wouldn't chose that option again.  i would opt for slowly and maybe progressive.  nice and irrelavant.  given the option i could have worked out my own schedule and felt nothing i didn't want too.

2019-06-05  i feel relatively good.  the ivig treatments have been at 6-week intervals rather than 4-week intervals for a while now.  i get to think better.  a lot better since rituxan kicked some cd20 ass.  i have evidence from the two people i most trust that i am still thinking well.  (dementia runs in my family.  usally female but sometimes i have to figure this into the cancer limit ().  it's gittin t' be a pain'n'th'ass)  so i'm probably okay there so far.

I guess i don't know exactly what to do now.  I'm still on pain killers, just not the morphine.  flushed the rest.  best that way.  So i'll get back to you sooner or later.  as i said near the top i usually only write when i'm feeling bad.  and i'm not.  later.

Oh, Yeah: th' gvmnts wachn evthng now.  jes'so ya no.  i'd be surprised if it wasn't in the agreement with walgreens.




Chimeric (mouse/human)

an antibody where the source material is from two or more species


Chimeric (mouse/human)




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