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Deja Vu All Over Again

6 years 5 months ago #44824 by globalguy
Really wish there were a way to reach out on a more personal level, though.

I'm really doing well and would like to provide whatever support/encouragement I can.

Joe P

Diagnosed: 01/2012 - TCC CIS
All Clear: 06/2012
Diagnosed (Again): 02/04/2013 - TCC CIS
All Clear (Again): 05/03/2013
Diagnosed Yet Again 10/15/2014 - RCC
Working It
Mass General Hospital, Boston, MA.

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6 years 5 months ago #44821 by Mspeevish
Many thanks again. I'm not sure if you are the person I should ask regarding forum questions or not. If I have goofed again, please let me know to whom I should ask, and I will forward these questions to your recommended person. Questions:

I had my first surgery 4 mos ago (TURB) and the pathology came back as transitional, non-invasive. Just had my 1st check-up and found several more tumors. I am scheduling a 2nd option and tentative surgery with chemo wash this month. Should I move myself over to another thread (depending on results) and start with a new topic?

Do the posts run from newest to oldest? Stupid question, but it seems that some topics have postings in both directions. If so, I will just follow the leaders.

My oldest daughter is the Lt. Gov. of the Key Club in The eastern Redlands (CA) Unified School District. Key Club is the high school branch of the Kiwanis. Society. She is always open to community support opportunities, and would like to look specifically into the ABCS as a potential project. This has becomehn a focus since not only do I have bladder cancer, her dad had kidney cancer 3 years ago, one uncle had melanoma (OK now) and the other is battling bladder cancer that has spread to his lungs, bones, and lymph system. Do you have recommendations for organizing an awareness event and/or fundraiser?

Maybe it could include environmental exposures (smoking, 2nd-hand smoke, diet, etc). I am a geologist and used to sample ground and surface water; you would be horrified to know what we saw.

I do go on. If you could post a reply to me under then"Newly Diagnosed" thread (funny bone), I will thank you again. Does one do anything more.specific to officially thank someone? I hope it is not a Facebook thing. I am an antifacebookaterian.

Schmoochies. - Mercedes

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6 years 5 months ago #44800 by Mspeevish
Oops.

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6 years 5 months ago #44798 by Cynthia
Just a reminder of why the moderators remove emails, phone numbers and personal contact information. It is for your protection this forum is open for all to read. Just because this is a survivor site does not make us immune to con men and identity thief's. We do not do this to upset anyone but we feel so strongly about guarding everyone's privacy that it is part of our terms and conditions.

Cynthia Kinsella
T2 g3 CIS 8/04
Clinical Trial
Chemotherapy & Radiation 10/04-12/04
Chemotherapy 3/05-5/05
BCG 9/05-1-06
RC w/umbilical Indiana pouch 5/06
Left Nephrectomy 1/09
President American Bladder Cancer Society

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6 years 5 months ago - 6 years 5 months ago #44797 by Mspeevish
I am totally a probie here; just signed up minutes ago. DV, Your journey is inspirational. You have multitudes of friends who have become your extended family through the years, not the least of which is mm (magic mike? - couldn't resist, sorry, Mrs. Mike).

I was first diagnosed in Dec 2012; and had a transitional resection Jan 21. Aside: would it kill them to just call it tumor removal? Really? This is worse than ordering a small coffee at Starbucks.

Dr. Ko performed a cyscoptosy, and let me see the tumor. it was dthe sea fan kind (kind of mesmerizing, really), and I asked him where Nemo was. No smile, nothing. Nothing at all, though the nurse snorted a bit.

So, I am once again scheduled for a small Starbucks coffee, in and out, just a few hours. I kind of knew the cancer had returned, as I had been having the backache and lower pelvic pain just weeks after Jan. The tumors must have started up right after the first surgery. Bastids.

I have only three complaints. One, my urologist, Dr. Ko at Loma Linda University, doesn't seem interested in altnatives that might compromise his (!) results. He is a clip board type of guy, and does not appear to have a sense of humor. I realize this may be an unrealistic expectation in a cancer situation, but at least a human doc could fake a little for my kids' sake. I thought my Nemo joke was quite hilarious.

Finally, would it really kill the insurance companies to let us stay overnight after cancer surgery? They have so much of our money, and it IS cancer, which should count for something, if only a night with cath assistance and a couple of ,, to order. The most I should ask hubs to do at home is to leave me in bed with some saltines, water, drugs, Jello, and a walker. The girls should not have to deal with cancer mom except to kiss to sleep. Actually, my husband might redeem himself by building me a motorized rope tow to the toilet. He CAN cook, but only grilled creatures and corn on the cob. I have no words.

See? See? I can be funny. I plan to visit USC Norris center in LA for a 2nd opinion after we get the biopsies from this round. My neurologist and neuropsychologist are there, and they could cross-access all of my info. No telling what good may come of that.

Anyway, my email is <<removed>>. Feel absolutely free to contact me. I will try to find some bcancer jokes in the meantime, and may any of the gods you relate to help you and yours through this.
The following user(s) said Thank You: Douglas

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6 years 5 months ago #44796 by GKLINE
Joe

Be very careful when you talk to Mike on the Phone. As you try to cheer him up, He has a very sneaky way of turning the conversation around so that you are the one getting cheered up.
Here is a guy in a major fight, and all he wants to do is make you feel like a million bucks!

Amazing!

We should all have such a good support system.

George

Light a man a fire and he is warm for an evening.
Light a man ON fire and he's warm forever.

08/08/08...RC neo bladder
09/09/09...New Hip
=
New Man! [/size]

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