I'll be thinking of you during my workout tomorrow. Truly pulling for good news to come your way.
D
I'll be thinking of you during my workout tomorrow. Truly pulling for good news to come your way.
D
Been having some of the most surreal conversations with my wife. Talking about plans to prepare for my demise. Redoing, selling current house. Buying a smaller, more affordable one for her once I'm gone. Cashing in on 401k. Whether to stay here (Texas) or go back home where family is. How much of a cushion I can give her before she has to get a job. No one ever tells you this may be something you do one day.
Remember the docs are still just practicing...
.
Wishing the best for you and your family.
Kevin52 wrote:
Remember the docs are still just practicing...
http://gawker.com/5919363/terminal-cancer-misdiagnosis-leads-couple-to-throw-life-savings-away-on-bucket-list.
Wishing the best for you and your family.
Thanks for the article. I am fairly certain it is a positive diagnosis. Between the 260+ tumors they took out last March and the genetic confirmation they got from the Mayo clinic, it's hard to deny...even though I wish with everything in my being they were wrong.
the cancer guy wrote:
Thanks for the article. I am fairly certain it is a positive diagnosis. Between the 260+ tumors they took out last March and the genetic confirmation they got from the Mayo clinic, it's hard to deny...even though I wish with everything in my being they were wrong.
They are basing a dignosis of recurrence based on what- blood tests? I recall you posting your blood work recently. There was some question about your WBC count? Or do they also have evidence of new tumors on PET scan, MRI, CT? I'm just wondering why they ran differential tests to rule out leukemia and lymphoma vs. recurrent sarcoma?
No need to respond if you find it burdensome to do so. Just know that you have lots of people thinking about you and sending positive, caring thoughts your way.
the cancer guy wrote: How much of a cushion I can give her before she has to get a job..
What is your wife's background/education?
Is there anyone that knows you personally that also follows this thread on Letsrun?
Your wife or someone?
If you cannot communicate online for a period, because of a hospital stay or something, we would like to be updated until you return to post for yourself.
We do not want to misconstrue any silence on your part for a period of time.
Good idea Henny.
Other than that, who are you in real life, 'guy? Please let us do something for you. I'm half way around the world, but I have some family in Texas. Do you have a blog or something somewhere we can follow?
Have you considered treatment with DCA? It has been tested in Canada.
I am new to this thread but not the site (Hell, usually I have something sarcastic to say).
Wow. What a story. You, OP, have truly lived. Thank you for sharing your story and inviting us along on your journey. Needless to say, I am sure we are all pulling for you.
This thread comes at a great time for me. Just this past weekend, I was slogging thru a long run and had another runner come by me and ask I was doing okay (I was walking and limping). I replied to him, "Sure, I mean, I'm hurting and just tired, but I'm enjoying it".
I am not sure if he was a new runner or a hobby-jogger because he said "Your hurting and tired but enjoying it? What's enjoyable about that?"
I gave him this stare and told him that not everything in life is always enjoyable and fun and rainbows and sunshine and that just being able to run is a gift, even when you aren't doing that well.
@neely: no, I am fine talking about it. I don't have a lot of folks to talk with about this stuff, not in real life, and, hate to burden my wife with her already all-too-heavy load. The recurrence is determined, first, by counts, which indicate a blood issue. They are doing a genetic analysis from my second marrow biopsy yesterday as the only 100% match they can get on this tumor type is a gene transcription error. I will know more about that next week. Stains ruled out leukemia, and, lymphoma was thrown out without a full medical history being presented to the pathologist. This tumor type comes from undifferentiated cells, so, it often mimics whatever tissue it is located in. In my case, the last test was hematological in nature, so, the tumor type masqueraded as lymphoma since it was first identified in lymphatic tissue. It's a very hard tumor to type because it is chimeric.
My wife has an undergrad in kinesiotherapy, but, didn't finish her masters. She was working on a practical side of cardiac rehab in exercise physiology. But, she was more into treating patients that research. So, she has some medical background, but, ironically, I find I understand the medical babble better than she. Had she finished her masters we would be a lot less concerned about her being able to get a job once I pass. As it is the only kind of job she can get (without a masters) is working for VA's...which she loathes.
@Henry Y: I will let me wife know to post when/if I am incommunicado. If you are really interested I can post you the link to my lotsahelpinghands site. If you join, please simply refrain from putting my identity out there. A few folks from here have joined and have been kind enough to not out me. (Thank you for that folks!)
@Brent: see above. If people really want to know, I can post the link.
@Alternate method: I have considered a great many things, but, if I get too far off the beaten path I will lose support from MDA (one of two primary institutes that help with this tumor type). So, it is risky getting too far off the beaten path. Plus, my oncologist there is a tool. So, pissing him off would in the end screw me out of treatment. Plus, those roads are EXTREMELY expensive. We have done a few of those things and lost a lot of money in the process.
Sprintgeezer, and others, a while back I started a thread to see if maybe letsrun could pull together to raise some funds for our friend and his fanily here. It didn't really go anywhere but mayne people on this thread who know the story can work to pull something together or even get the brojos to help out (I sadly jabe no idea how to organoze stuff like that). Maybe theu could set up a donation linl on the front page or maybe some of the contest money they give out could be diverted tk helping one of our own?
the cancer guy wrote:
@neely: no, I am fine talking about it. I don't have a lot of folks to talk with about this stuff, not in real life, and, hate to burden my wife with her already all-too-heavy load. The recurrence is determined, first, by counts, which indicate a blood issue. They are doing a genetic analysis from my second marrow biopsy yesterday as the only 100% match they can get on this tumor type is a gene transcription error. I will know more about that next week. Stains ruled out leukemia, and, lymphoma was thrown out without a full medical history being presented to the pathologist. This tumor type comes from undifferentiated cells, so, it often mimics whatever tissue it is located in. In my case, the last test was hematological in nature, so, the tumor type masqueraded as lymphoma since it was first identified in lymphatic tissue. It's a very hard tumor to type because it is chimeric.
My wife has an undergrad in kinesiotherapy, but, didn't finish her masters. She was working on a practical side of cardiac rehab in exercise physiology. But, she was more into treating patients that research. So, she has some medical background, but, ironically, I find I understand the medical babble better than she. Had she finished her masters we would be a lot less concerned about her being able to get a job once I pass. As it is the only kind of job she can get (without a masters) is working for VA's...which she loathes..
Your WBC wasn't all that far off the norm- right? Could the change in your WBC be a non-issue or is it definitely indicative of recurrence? Was your differential normal (i.e., number of neutrophils, lymphs etc)? I just find it odd that the doctors have expressed confidence in a recurrence diagnosis based on blood cell counts without new clinical symptoms, evidence of metabolically active cells by PET, evidence of tumor by CT/MRI etc. I did notice that your alk phos levels were on the high side which might be playing into things (given that high levels indicate greater bone turnover). It sounds like you are getting excellent medical care, though, so it's probably silly of me to ask these questions.
As for your wife, perhaps she should think of going back to finish her masters? It might be a nice thing for both of you to set your sights on now? She wouldn't necessarily have to go full-time. Maybe she could start with just 1 course in Sept?
I'm keen to follow/join your site, if you feel comfortable posting the link. Again, I'm sending lots of prayers to you and your family.
neely wrote:
the cancer guy wrote:@neely: no, I am fine talking about it. I don't have a lot of folks to talk with about this stuff, not in real life, and, hate to burden my wife with her already all-too-heavy load. The recurrence is determined, first, by counts, which indicate a blood issue. They are doing a genetic analysis from my second marrow biopsy yesterday as the only 100% match they can get on this tumor type is a gene transcription error. I will know more about that next week. Stains ruled out leukemia, and, lymphoma was thrown out without a full medical history being presented to the pathologist. This tumor type comes from undifferentiated cells, so, it often mimics whatever tissue it is located in. In my case, the last test was hematological in nature, so, the tumor type masqueraded as lymphoma since it was first identified in lymphatic tissue. It's a very hard tumor to type because it is chimeric.
My wife has an undergrad in kinesiotherapy, but, didn't finish her masters. She was working on a practical side of cardiac rehab in exercise physiology. But, she was more into treating patients that research. So, she has some medical background, but, ironically, I find I understand the medical babble better than she. Had she finished her masters we would be a lot less concerned about her being able to get a job once I pass. As it is the only kind of job she can get (without a masters) is working for VA's...which she loathes..
Your WBC wasn't all that far off the norm- right? Could the change in your WBC be a non-issue or is it definitely indicative of recurrence? Was your differential normal (i.e., number of neutrophils, lymphs etc)? I just find it odd that the doctors have expressed confidence in a recurrence diagnosis based on blood cell counts without new clinical symptoms, evidence of metabolically active cells by PET, evidence of tumor by CT/MRI etc. I did notice that your alk phos levels were on the high side which might be playing into things (given that high levels indicate greater bone turnover). It sounds like you are getting excellent medical care, though, so it's probably silly of me to ask these questions.
As for your wife, perhaps she should think of going back to finish her masters? It might be a nice thing for both of you to set your sights on now? She wouldn't necessarily have to go full-time. Maybe she could start with just 1 course in Sept?
I'm keen to follow/join your site, if you feel comfortable posting the link. Again, I'm sending lots of prayers to you and your family.
I try to sound like I get what the doctors are saying when I talk with them, but, I believe that the labs were inconclusive, other than to show a trend. In this case, they did a second biopsy as the special stains were not definitive the first go round. They are sending these up to Mayo (which provided us the first positive diagnosis). I would be the first person our MDA oncologist has seen with recurrence in the marrow, though, it is not unheard of. Just extremely uncommon.
Here is the link to the site:
https://www.lotsahelpinghands.com/c/624545/My wife tries to post when big news breaks or we have not had anything to say in a while. Lately, it's been pretty active...sadly.
Obviously I can't speak for anyone else, but if there were some fundraising done here, especially for something concrete, you know, "We'd need X dollars to get this experimental but somewhat promising looking treatment," I think a lot of us would contribute. I certainly would.
But I wouldn't be surprised if CG feels awkward about saying something like that. I hope he wouldn't feel awkward because I'd love to be able to help and I'm sure many others feel the same way. So CG, if there's something you're thinking might help but is beyond your price range I think a lot of us really would like to know how far beyond and how much we could do to get it into range. Think about it.
i second this
I've mentioned this a couple times. Hopefully the more people who bring it up the more of an option it will be.
Maybe the BroJos could make a little place on the site with a PayPal setup? They already know CG since he was one of the Puma winners. It'd keep his anonymity on the boards and be a place for us to help. Of course, it's CG's option.
@HRE: Thanks for thinking of me. Honestly, there is no magical cure for this...not even an expensive one. This is one of those "if you get it we're sorry, there's not a lot we can do" kind of cancers. I do think a couple of packs of this:
http://www.thinkgeek.com/product/c6c9/
would be fun. I plan to get some and open them up when I get transfusions as the nurses hook me up then start drinking them screaming,
"I can't wait around here all day! I have to get back to the office!"
I can't wait to see the looks on their faces! It's not all about being downcast! :)
Seriously though, my plan right now is to redo our current house, sell it, buy a smaller, more affordable place for my wife and kids, and, get them closer to our old church. They have a great community upon which my wife and kids can lean. As we get it on the market our big goal will be to downsize and prepare for the last few months. Man it feels weird talking about it this way...
Looks like you've got gallows humor worked out to an art form. I didn't think there was any magical cure but if you wanted to take a flyer on something unorthodox I think a lot of us would want to help get you going.
If this is something you'd rather not get into I understand completely. But do you have any thoughts about whether something comes next? I'm guessing that you must have some sort of spiritual inclinations as you mention your old church.
HRE wrote:
Looks like you've got gallows humor worked out to an art form. I didn't think there was any magical cure but if you wanted to take a flyer on something unorthodox I think a lot of us would want to help get you going.
If this is something you'd rather not get into I understand completely. But do you have any thoughts about whether something comes next? I'm guessing that you must have some sort of spiritual inclinations as you mention your old church.
As far as next steps, my oncologist outlined two or three very intense chemos, both of which I have done in the past, as being immediate actions. Once we identify what the cancer type I am now dealing with happens to be, we will define a plan, and, go from there. The scary part is that we have to use agents that will make my counts much worse in hopes of improving them. That's a best case scenario. There is an equal chance I will get an infection they cannot control and die as a result. So, even the most basic steps, at this point, are as dangerous as they are potentially productive.