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How to honor kidney cancer awareness month in March

cancerat46's picture
cancerat46
Posts: 35
Joined: Feb 2013

I was pondering positive ways to recognize the upcoming awareness month and pulled out on old tablet to jot down some ideas. In that tablet I came across a page I had used 10 years ago when my husband was diagnosed with diffuse, systemic Scleroderma (a rare and often deadly auto-immune disease.) Then, too, I was struggling to find a positive outlook after a horrible diagnosis and I had written down the following:

"God shook our Etch-a-sketch, giving us a blank slate and a chance to draw a new picture."

I need to listen to my 10-years-ago-self now in the face of my RCC! I need to try every day to make this new picture a masterpiece! Here's hoping everyone here finds their own deluxe box of Crayolas!

donna1grace's picture
donna1grace
Posts: 2
Joined: Feb 2013

Dear cancerat46...I appreciate your words! I didn't even know there was a month that provides awareness for Kidney Cancer. I like to let women know the symptoms as I completely ignored them until my doctor left 3 messages to call him back so that I could have my usual cystoscopy. I was just too busy and accustomed to seeing blood and feeling discomfort due to IC, I had no idea the "flank" pain was important. Thank God I am okay, however I will say it changes your life forever just being on the Oncology floor and seeing so many people that are so sick...now my bones hurt me so bad I can barely stand it. I have an appointment in March to try to find out what is going on with the pain in my bones & the extreme tiredness.

roaddr23's picture
roaddr23
Posts: 77
Joined: Jan 2013

I live an hour + south of DC but had my surgery at Washington Hospital Center in DC..I am lucky to live in an area with wonderful medical resources..I have a friend from the FD who is a retired reporter from one of the DC TV Stations...I am going to see if he can hook me up with a reporter from his former station and hopefully do a spot about Kidney Cancer in March...I will let you guys know what happens..

Texas_wedge's picture
Texas_wedge
Posts: 2807
Joined: Nov 2011

As late as March? That's days away!  Are you just going to keep sitting on your hands like this?  You must have been out of the operating theatre for at least a week!

Do you have any thoughts on the content of your spot? I hope it gets syndicated because I'm sure it will be good.

roaddr23's picture
roaddr23
Posts: 77
Joined: Jan 2013

I would really like to hit hard on the mostly benign symptoms...like don't ignore blood in the toilet the first time...Last go round..I peed a bucket and went immediately to Drs...however...between that day and my surgery I never saw a drop of blood...I had a lot but I also have a family member who ignored the first little bit HE saw..and sadly, is deceased now...also, I have a true genetic factor in mine...start talking to older members. My maternal grandmother had her kidney removed for the same thing in the 50's when she was 50...she lived into her 80's and never had another recurrence...but on a genealogy site I talked to a guy from her line that had it when he was 36... we need to check our family histories etc...My daughter was advised because of the hx to have a routine screening now...I am sure that will be an insurance company fight but we can go there too,...I have been lucky twice to just have surgery...so many of you are dealing with meds, treatments etc...that I have no knowledge of and would like to understand better...we need to put this cancer in the headlines too...especially since the symptoms can be caused by so many other things...I am going to my best.. Can you believe that I used to be the kid who would stay home sick because I was terrified to do an oral book report...That changed in August of 1979 when my youngest sister in law was killed by a drunk driver..I was one of the first members of MADD...and I haven't shut up yet...

 

roaddr23's picture
roaddr23
Posts: 77
Joined: Jan 2013

I would really like to hit hard on the mostly benign symptoms...like don't ignore blood in the toilet the first time...Last go round..I peed a bucket and went immediately to Drs...however...between that day and my surgery I never saw a drop of blood...I had a lot but I also have a family member who ignored the first little bit HE saw..and sadly, is deceased now...also, I have a true genetic factor in mine...start talking to older members. My maternal grandmother had her kidney removed for the same thing in the 50's when she was 50...she lived into her 80's and never had another recurrence...but on a genealogy site I talked to a guy from her line that had it when he was 36... we need to check our family histories etc...My daughter was advised because of the hx to have a routine screening now...I am sure that will be an insurance company fight but we can go there too,...I have been lucky twice to just have surgery...so many of you are dealing with meds, treatments etc...that I have no knowledge of and would like to understand better...we need to put this cancer in the headlines too...especially since the symptoms can be caused by so many other things...I am going to my best.. Can you believe that I used to be the kid who would stay home sick because I was terrified to do an oral book report...That changed in August of 1979 when my youngest sister in law was killed by a drunk driver..I was one of the first members of MADD...and I haven't shut up yet...

 

roaddr23's picture
roaddr23
Posts: 77
Joined: Jan 2013

I would really like to hit hard on the mostly benign symptoms...like don't ignore blood in the toilet the first time...Last go round..I peed a bucket and went immediately to Drs...however...between that day and my surgery I never saw a drop of blood...I had a lot but I also have a family member who ignored the first little bit HE saw..and sadly, is deceased now...also, I have a true genetic factor in mine...start talking to older members. My maternal grandmother had her kidney removed for the same thing in the 50's when she was 50...she lived into her 80's and never had another recurrence...but on a genealogy site I talked to a guy from her line that had it when he was 36... we need to check our family histories etc...My daughter was advised because of the hx to have a routine screening now...I am sure that will be an insurance company fight but we can go there too,...I have been lucky twice to just have surgery...so many of you are dealing with meds, treatments etc...that I have no knowledge of and would like to understand better...we need to put this cancer in the headlines too...especially since the symptoms can be caused by so many other things...I am going to my best.. Can you believe that I used to be the kid who would stay home sick because I was terrified to do an oral book report...That changed in August of 1979 when my youngest sister in law was killed by a drunk driver..I was one of the first members of MADD...and I haven't shut up yet...

 

roaddr23's picture
roaddr23
Posts: 77
Joined: Jan 2013

I would really like to hit hard on the mostly benign symptoms...like don't ignore blood in the toilet the first time...Last go round..I peed a bucket and went immediately to Drs...however...between that day and my surgery I never saw a drop of blood...I had a lot but I also have a family member who ignored the first little bit HE saw..and sadly, is deceased now...also, I have a true genetic factor in mine...start talking to older members. My maternal grandmother had her kidney removed for the same thing in the 50's when she was 50...she lived into her 80's and never had another recurrence...but on a genealogy site I talked to a guy from her line that had it when he was 36... we need to check our family histories etc...My daughter was advised because of the hx to have a routine screening now...I am sure that will be an insurance company fight but we can go there too,...I have been lucky twice to just have surgery...so many of you are dealing with meds, treatments etc...that I have no knowledge of and would like to understand better...we need to put this cancer in the headlines too...especially since the symptoms can be caused by so many other things...I am going to my best.. Can you believe that I used to be the kid who would stay home sick because I was terrified to do an oral book report...That changed in August of 1979 when my youngest sister in law was killed by a drunk driver..I was one of the first members of MADD...and I haven't shut up yet...

 

roaddr23's picture
roaddr23
Posts: 77
Joined: Jan 2013

I would really like to hit hard on the mostly benign symptoms...like don't ignore blood in the toilet the first time...Last go round..I peed a bucket and went immediately to Drs...however...between that day and my surgery I never saw a drop of blood...I had a lot but I also have a family member who ignored the first little bit HE saw..and sadly, is deceased now...also, I have a true genetic factor in mine...start talking to older members. My maternal grandmother had her kidney removed for the same thing in the 50's when she was 50...she lived into her 80's and never had another recurrence...but on a genealogy site I talked to a guy from her line that had it when he was 36... we need to check our family histories etc...My daughter was advised because of the hx to have a routine screening now...I am sure that will be an insurance company fight but we can go there too,...I have been lucky twice to just have surgery...so many of you are dealing with meds, treatments etc...that I have no knowledge of and would like to understand better...we need to put this cancer in the headlines too...especially since the symptoms can be caused by so many other things...I am going to my best.. Can you believe that I used to be the kid who would stay home sick because I was terrified to do an oral book report...That changed in August of 1979 when my youngest sister in law was killed by a drunk driver..I was one of the first members of MADD...and I haven't shut up yet...

 

roaddr23's picture
roaddr23
Posts: 77
Joined: Jan 2013

I would really like to hit hard on the mostly benign symptoms...like don't ignore blood in the toilet the first time...Last go round..I peed a bucket and went immediately to Drs...however...between that day and my surgery I never saw a drop of blood...I had a lot but I also have a family member who ignored the first little bit HE saw..and sadly, is deceased now...also, I have a true genetic factor in mine...start talking to older members. My maternal grandmother had her kidney removed for the same thing in the 50's when she was 50...she lived into her 80's and never had another recurrence...but on a genealogy site I talked to a guy from her line that had it when he was 36... we need to check our family histories etc...My daughter was advised because of the hx to have a routine screening now...I am sure that will be an insurance company fight but we can go there too,...I have been lucky twice to just have surgery...so many of you are dealing with meds, treatments etc...that I have no knowledge of and would like to understand better...we need to put this cancer in the headlines too...especially since the symptoms can be caused by so many other things...I am going to my best.. Can you believe that I used to be the kid who would stay home sick because I was terrified to do an oral book report...That changed in August of 1979 when my youngest sister in law was killed by a drunk driver..I was one of the first members of MADD...and I haven't shut up yet...

 

NanoSecond's picture
NanoSecond
Posts: 515
Joined: Oct 2012

Hi roaddr23,

First off, I am in the DC area too (Rockville, MD) and had my left nephrectomy at Washington Medical Center back in May 2010. It's a great facility.

I am looking forward to seeing your spot(s) airing during the local news (as that's the only broadcast TV that I watch).

Have you thought about setting up a network between all the fire departments and/or other first responders across the country?  I only ask this because I recently heard from a cousin (wife's side of the family) who is a fire fighter out in San Francisco.  She said they have noticed an unusually high incidence of renal cancer amongst their troops.  Perhaps you are also aware of this?  Is is due to being exposed to toxins in the air?  Are there any studies being done about this that you might know of?

 

roaddr23's picture
roaddr23
Posts: 77
Joined: Jan 2013

What I was thinking of doing was setting up an anonmous list of symptoms etc..including a parent that had kidney...like a known family history in their family...listing possibly   symptoms they may have known or dealt with that some of us have not experienced...I just think that I can takes the reins here but I really would love to see this become a project we can all be proud of.

So please feel free to call me and lets put our heads together and see how things come out...I know we can make a difference. My # is  443-550-3844          

Thanks,

Laurie Gilman aka roaddr23 (road doctor)                                          

NanoSecond's picture
NanoSecond
Posts: 515
Joined: Oct 2012

Hi Laurie,

Yes, I will contact you.  Might not be today though - lots going on.

I like your ideas.

In the meantime please email at = n.feldman@videopost.com

I have a document to send to you.

Best wishes,

-Neil Feldman (NanoSecond)

Texas_wedge's picture
Texas_wedge
Posts: 2807
Joined: Nov 2011

You've certainly been doing some thinking and, indeed, as you say, you haven't shut up for a while!  - sometimes when CSN is slow you just have to learn to be patient with the "Submit" button, but you certainly forced it into submission!

You're right about not ignoring seemingly minor tell-tale signs - with the wisdom of perfect hindsight, I might have made more of a few faint signals and got a dx before my histology morphed into a totally incurable form.

roaddr23's picture
roaddr23
Posts: 77
Joined: Jan 2013

I swear I only hit submit once and then the computer locked up on me. On thing I am very interest in is the "Night Sweats" as they are killing me and I believe it is because the adrenal gland that sits on the kidney and I think the cancer effects the way it functions and sometimes it causes cortisol and adrenaline  to just dump all that into our systems at once and the effect is like running a marathon.Thos of you that are having trouble with this being accepted . I feel safe sharing my phone # if any of you have anything that you think needs to be hit on if I can gets this on the news next month call me any time and we can gather up some excellent speaking points  on it..I want you to know that this has become a top priority for me. When I couldn't get back on the computer the other day I was upset as hell but then I had a night to think and sort of ended up with a dose of Survivors guilt..I have had this twice..come in get some surgery and go on my way...I am suffering a bit of survivor guilt as I just seem to come in both times have surgery and get clean  edges after tumor removal. And am basically cured per my Dr....there is so much going on with you   guys that I want to learn from you and help you get through this...This is a club none of us wants to belong too but if we have to I think that the best of the best have come. So think about it and give me a call...I am the one that is going to try to get the story out but I don't want to do it just for me...you have become family to me in a sense and I want to fight for the lives of my family. I know we can do this...I just want as many of you that would like to take part just let me know..

Well it is way past my bedtime but I wanted to get this up to get you some food for thought

Bless you all,

Laurie Gilman aka roaddr (road doctor)

roaddr23's picture
roaddr23
Posts: 77
Joined: Jan 2013

Guess What Guys, although my mind still adamantly believes I am 20 my 62 year old body jumped in and slammed me to a stop dead in my tracks..You all know how blessed and excited I am to have beaten this cancer twice and I was most assuredly running on pure adrenalin...now I am humbled and realize no matter what my mind says my body cannot recover and heal if I don't rest, rest and rest some more....so I have been trying to be a good girl and follow my Drs and my body's orders and have been resting and resting and I hate to admit it but my body is right this time. It is just hard to make myself do it but now with no pain meds (I hate taking them anyway) when I start to get amped up and do stuff I am immediately reminded of why I am supposed to rest...LOL...I did hook up with my FD friends local TV Station and to my amazement the reporter said they had just finished filming a piece with a patient that just had robotic surgery at Georgetown for RCC but she said she was going to see if she can work something in with me too...but if they can't that is ok because I was extremely excited that they were on it already...so I will keep you all updated and I will try to get on more just to help us all keep our spirits up...Know I am thinking of you guys and sending out good energy...so glad to have found so many new friends..

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