What Living Looks Like

Posted by: mikemann in bladder cancer on Print PDF

While a member of our discussion group undergoing chemotherapy and following a cystectomy for bladder cancer, Lea Marek created an online cancer journal that featured photos contributed by fellow group members; her goal was to share pictures of her online friends, "...living and enjoying life, in spite of a cancer diagnosis." Lea's pictures have been preserved here at WebCafe, and we continue this project in memory of Lea Marek, 1968-2003.


This page is alphabetical on the first or nick name since this is often all we know from the list e-mails. If more than one person are involved, then it is by the one that tends to write the most often.

ALSO, please note that if the person's name is underlined then that means that their story is also on our "Tales from the Trenches" section and the name is linked to that story. If you click on the name/link then you will go to the stories pages where you can read the story they have posted.


 

Angela Winterbower with her husband and two sons.  Angela was diagnosed in April 2006 at age 32 with T1G3.  Radical cystectomy and neobladder June 2006.  CIS also found during RC. 


 

Barbara Norkus had her neo-bladder surgery on Sept.12, 2005

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Left to right.Barb Norkus, Cindy Duffy, Burt Handler.
It was the BCAN Walk May 5, 2012 in Arlington Hgts, IL organized by Cindy Duffy's daughter, Amy.


Bill Butcher - Fun With Cancer! Me & supportive, loving family (L-R: Wife Carla, Me, Son Shawn, Daughter Jaime) in pre-op awaiting last TURB.  Have been clear for three years this month since last TURB in 2004 and have posted humorous (at least it amuses me) adventures with the Pee Pee Doc and Nurse Ratched in the caf in the past.  Mostly enjoy lurking and vicariously sharing triumphs with members!


Bill and Wilma Pullen, Bill had neobladder surgery Thanksgiving week 2003 at M. D. Anderson.


Billie Yandell and her painting "Cabbage Baggage." Billie was diagnosed with CIS in July 2006; and had a RC October 23, 2006 with ileal conduit. The painting was done during her recovery from the surgery.


Bob & Virginia Crilley. Bob received his neo-bladder (Studer type) on December 30, 2004


Bob Myers 6 months before RC. Age, at time of RC 68 RC, July 2005, Norris Cancer Center, Dr Stein. Can't recall the grading or staging but, whatever it was it was bad enough to do  RC ASAP. I service and sell Photo ID systems, from my home office. I spend my free time trying to learn to play the guitar (fingerstyle, blues).  So far I have become more of a collector than a player. (8) guitars to date and haven't learned one song yet.


Bob Wilson: Cystoprostectomy at Moffitt Cancer Center January 31st of 2005 with a neobladder/nerve sparing.


Brian Grace from the UK  and granddaughter Anna who lives in Boston USA. Brian was recently diagonised with a T2G3 and awaiting either a RC or radiotheraphy.


Carol Owens is recovering from RC done on May 2, 2006 after BCG treatments failed to contain her cancer. She is looking forward to returning to hiking, birding, kayaking and other forms of active living.



Cindy Thomas-Duffy, left front, with her mother and two daughters. Cindy was unsuccessfully treated with BCG and Interferon combination, had a complete RC and neobladder installed in 2005.


Cliff Dawe from a photo of the Tulsa Band in 1986 when he was 36. Cliff has CIS and is being treated with BCG and Inerferon after treatment with BCG alone failed. Cliff is one of our Canadian members


Crilly Butler at Stonehenge in 2005. Crilly is a four year survivor being treated with BCG and Interferon. Crilly is an excellent researcher in numerous areas and is a great information source for the list.


Chris Allison: Diagnosed March 2006 at age 35 with T1G3, treated with TURB and induction BCG, no BCG maintenance. Clean after 2 cystos.


Cynthia Kinsella, is a Realtor living in the beautiful Berkshire Mountains of Massachusetts. She firmly believes that as long as you can get up and put on your lipstick you are doing fine. She enjoys hiking, snorkeling, dancing, writing and her work with the Bladder Cancer Advocacy Network. 47 at the time of original dx 50 looked real good this year. T2 g3/3 CIS Aug.2004, Clinical Trial combined modalities-Chemo.& Radiation Oct-Dec 04, CIS Jan.2005, Systemic Chemo. March-May 05, Ta g3/3 Sept.2005, Oct.2005 - Jan 2006 BCG, T1 g3/3 multiple tumors, CIS March 2006, Radical Cystectomy- Umbilical Indiana pouch May 2006, Nov.2006 NED. Be sure to check out Cynthia's corner


Dan Martin, diagnosed July 2004 with T1G3 and CIS at age 50. After two TURBTs and multiple BCG sessions, had a neobladder installed August 2005.


Dolores Stokes, with her grand-son and his wife has just been recently diagnosed with BC.


Douglas P. Nace: Born 8/62, RC 5/05, nephrostomy tube 4/06, not quite dead yet.. 


Earnie Kramar and grandsons. Cystectomy and prostectomy with Neo-Bladder September 15 2005   Cat scan indicates 0 cancer.


Fred Stroop, AKA Deacon John, diagnosed with CIS in October 1998. Finishing 24 months of Gemcitabine installations, feeling fine and loving life.


Gary & Jolene Ratliff: Gary was dx 10/01, Stage T3BN+ (RC/neobladder).  Celebrated 5 years NED, 10/06.


George (of Texas) Holmes, playing an air guitar for his grand kids. BC discovered in 1997. Many tests, instillations, trial diagnostic meds done partly in Austin, Texas and the rest at MD Anderson, Houston, Texas. Had R.C. done in March of 2004 at MD Anderson Cancer Center. Cancer removed successfully and an Ileal Conduit with a stoma installed. I went from being a Couch Potato to being a Pouch Potato!


Gordon Chapman was dx with BC 11/03 and went through two treatments of BCG before having a neo-bladder "installed" on 9/9/04. Gordon is a retired accounting professor and lives with his wife Rose, a breast cancer survivor, in Spokane, Washington. They have learned to truly enjoy "those moments in between" life's trials and tribulations! His obvious passion is fly-fishing in the Great Northwest. BC has not changed that! He has been an ardent lurker in the blcwebcafe since February 2005


Jan Klingenberg with husband and twin daughters adopted from China in August of 2006, Alexandra and Sydney. Diagnosed in January 2004, 17 weeks of chemotherapy followed by radical cystectomy orthotopic neobladder in the form of a Studder Pouch at MD Anderson in Houston on July 6, 2004. Looking forward to my three-year anniversary as a NERD (No Evidence of Recurrent Disease!).


Jeanie and Gary Bowden: Gary was dx in Feb.. 2006; TURB April; T-2; RC not possible due to other health conditions; refused chemo and radiation. Currently Hospice care; taking herbal remedies and no visible signs of BLC or mets, although no tests have been done.  


Jeffery Redfern, 54, dx in 1999 with superficial bladder cancer. He has had four TRUBTs but no BCG or other treatment.


Jeff Stein, 49, and his wife, celebrating our 25th anniversary at home with family and friends. RC July 2003 at USC Norris, two years cancer free.


Jenny and Dan Billings, Nottingham, UK: Jenny was Dx with BC T1 G2 March 2005, aged 32.  Since then a total of 4 TUR BT's (the most recent for the first recurrence in Oct), plus Mitomycin and BCG.  She writes that also had chronic fatigue since the BCG, but despite this Jenny and long-time partner Dan managed to get married this summer! He has been an absolute rock and I am the luckiest woman in the world!!


Jim and Naomi Babb


Karen, the GreeneGoddess, Greene, is a clinical psychologist in NYC that also works in a state hospital. Dxed with a muscle invasive TCC December 1999, node mets discovered by CT scan in January 2000.Had six months of a five drug chemo cocktail, then had the RC with Indiana pouch in August 2000.

 

Kathy Knight is a major survivor having dealt with a number of cancers over the years in addition to bladder cancer. 1976--malignant melanoma-- 1, 1986-1990-1996--malignant meningioma--(brain)--3 1998--2004--TCC--transitional cell carcinoma (bladder)-- 6 2000's--BCC-basal cell carcinoma--2
2007--RCC-renal cell carcinoma (kidney)- 1
. She also had two other issues that were potentially fatal septic shock in 1982 and the V-P shunt in my brain for hydrocephalus in 2007.    


Ken and Connie Tolbert, at his graduation with a Masters Degree in Addictive Counseling, August 2005. He had neobladder surgery just three months before.


Ken and Puff having dinner in Rochester, Mn


Kevin Loweree and son Ryan. Dx with large low grade TA in 2001 treated with BCG and Interferon clear ever since .


Larry Eicher , 64, is a retired diplomat who lives in Charlottesville, VA with his wife Vicky, also a retired diplomat and a breast cancer survivor. Dx November 2006 with superficial bladder cancer. He had his first TURBT November 17, 2006 and is presently scheduled for cysto checkups every 3 months. Larry's photo shows him handling an injured immature Bald Eagle (under 5 years old) at the Alaska Raptor Center in Sitka, Alaska where the Eichers did volunteer work for the past 3 summers.


Leslie Parker celebrating birthday on the Disney Magic 11/19/02 with a close friend.  TURB 8/1/01 T1G3.  Did 15 months of BCG and had to stop due to side effects, been clear since TURB.

Lynn Williams was diagnosed in 2003 and has had treatments with BCG and Mitomycin C.


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Lynn & Roger Williams bald. Roger shaved the rest of his hair to keep Lynn  company.


Mike Mann and Fran Millians, off Cape San Blas, Florida, in the sea kayaks he built for them. Mike had the Combined Modalities treatment and has passed seven years since his diagnosis.


Pat McVey, on the left, with her friend Kathy Sequin in June 2005 at the Kentucky Horse Park after her March 2005 RC and neobladder surgery.


Paul H., blue sweatshirt and baseball cap in the middle, with friends at "Easter in the Park" in Dallas. Paul was Dx'd in March 2004 with papillary tumor and CIS. He is being treated with Dr. Lamm's BCG protocol and there has been no evidence of disease (NED) since October 2004.


Paul Reeves with his three sisters; Shirley, Martha, and Betty - Martha and Betty are also breast cancer survivors. Paul was DX'd in 2002 with CIS and in 2004 with probable upper tract TCC. His treatments include TURB's and intravesical BCG, Interferon, Mitomycin and Gemcitabine to both the bladder and UT. He is scheduled to resume intravesical treatments soon based on suspicious cytologies


Pete Granger, Australian: My only claim to fame - born in the same small suburb as Rupert Murdoch and Dame Edna Everage, and currently living one street from where croc hunter Steve Irwin was born and raised.

August 1999, Gross Haematuria, Rigid Cytoscopy - nothing detected, August 2004, Diagnosed Ta G2, TURBT/Mitomycin, August 2005, 1 Recurrence, TURBT, August 2006. All Clear. As you might gather, Augustus is not my favorite Roman Emperor.


Puff, Robert Puffer, 59, rides the train from Shelby, Montana to Rochester, Minnesota to get his treatments from the Mayo Clinic. Dxed in November 2002 he is currently NED after treatment with BCG. The Puffman is a radio broadcaster and host "Afternoon drive" on KSEN in Shelby. His audio interviews with prominent bladder cancer physicians and researchers, Dr. Donald Lamm and two with Dr. Michael O'Donnell can be downloaded from the Web Café main page.

after a gruelling week of tests and procedures at Mayo Clinic in Rochester, Minnesota, we caught up with the Puffman at his favorite watering hole in Rochester, the internationally famous Michaels.

Roger Barton was diagnosed at 35 with Stage IIIb/Grade IV bladder cancer, RC and nerve sparing were all done laprascopically.


Roni and Ben Olsen taking a hike in the woods. Roni's A Guide to Bladder Cancer, Urostomy and Impotence is a must read, in particular, for anyone contemplating a RC. It details her husband Ben's battle with bladder cancer and the results.

Seattle Wayne Quinn Got bladder and prostate cancers 1997 Indiana pouch created then.  All free until 2006 when got Ureter cancer lesion.  Surgical ureteronephrectomy.  Currently no issues.  I ride my bicycle yearly from Seattle to Portland which is over 200 miles.  So.... I am not doing that badly by any means.  Keep looking to the future!  Day by day.  I am currently 61   Photo put up Feb 2011

Update 5/2012:
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1997 RC w/ Indiana pouch
2006 R kidney and ureter removal for recurrence.
2011 metastasis to R lung and liver
On chemo since June 2011 with shrinkage. Taxol and Carboplatin

Retired RN serving homeless patients for over 30 years. With my wife Joanne (32years) 2 daughters and 3 grandaughters now enjoying retirement and hoping to overcome statistical odds against me.


 Simpson Russell with wife Connie, August, 2008 update and a heartfelt thanks to those on the list who were so helpful to me during the months leading up to my RC at Vanderbilt in April, 2006. I have been NED since then and continue to enjoy good health and an active lifestyle that includes a daily exercise routine consisting of both strength and aerobics plus a forty-  five minute "dog walk". My neo-bladder has performed flawlessly with both 100% day and 99% night-time continence and I have never had to
catheterize. All of which is to say to those whose struggle goes on
that there is hope on the other side of an RC.  My next checkup will
be in January of 2009 and with no symptoms observed my hopes are high for another good result. I'll be 73 then. Best wishes to all.


Shirley Greenberg of Ottawa and Barbados, Dx in September 2004, completed BCG treatments in December 2004. No evidence of disease since then but awaiting report on a recent P & P. Healthy except for Blc, has an active life and loves to travel, play golf, dance and socialize.


Tom, Alana & Hope, Steinmetz. Alana was dx'd with a 4.5 cm high grade T1 tumor when she was 19 weeks pregnant with Hope. She has been receiving BCG therapy, November 15, 2005 will be two years with NED.


Wendy Sheridan, with her dog Ruby, is the mother of this web site which she started to gather information for a sister with Bladder Cancer. Wendy is a Breast Cancer survivor, she and husband Joris Tielkes live on a houseboat in Amsterdam.


This page maintained by Mike Mann, many thanks