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My badder cancer story

6 years 3 months ago #45059 by teresa56
Hi Gail,

I just read your story today. Wow! You sure have been through a lot.....and prevailed! You're a fighter. How are you doing now? I pray that you may not only be surviving but THRIVING!

Shalom,
Teresa

Radical Laproscopic Nephro-Ureterectomy: 05/18/12
TURBT: 01/14/13 (dx: CIS, high grade)
TURBT: 05/28/13 (dx: pT1, papillary urothelial carcinoma, & high grade & CIS)
BCG: Induction Phase completed: 07/31/13

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7 years 7 months ago #41424 by DougG
Gail,

Thank you for sharing your story. So glad that you were given the good advice and that you heeded it. I know your daughter is happy to have her Momma home, gaining strength, and in yoga class. Praise be to God!

Anita

Anita
Forum Moderator
Caregiver

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7 years 7 months ago #41423 by upnorth
Gail,

You have done a wonderful job of telling your story. It almost reads like a TV movie, but the scariest parts is that it is true, and you are living it.

I salute you for your abilities, and the courage you have displayed through out this whole ordeal. I hope others read this and see that YOU, and YOU ALONE, are ultimately responsible for your medical decisions.

I hope and pray that you can continue to be so strong and keep taking care of yourself, and your daughter.

I will pray for you, and with you.

Mark

Age 55
Diagnosed BC 12/20/2011 Ta No Mo 0a Non-Invasive At age 48
"Please don't cry because it is over..... Smile because it happened!" {Dr. Seuss} :)

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7 years 7 months ago - 7 years 7 months ago #41421 by CatherineH
Hello Gail... Welcome to our forum and thank you for sharing your story in such a compelling way. When I got to the last sentence, I was both breathless and teary-eyed from reading the profound struggle you have been through and the courageous way you have prevailed. I am so happy that you have reached a point of equilibrium in living with your diversion, getting on with your new "normal", and back to being a healthy mom to that beautiful little girl.

The advice you received was indeed life saving... get to a major cancer center - pronto! Too many local uros are just not equipped or even aware of some of the complexities and evils of bladder cancer. Your story is absolute proof of that!

Best wishes for continued good health,
Catherine

Best wishes... Catherine
Forum Moderator Team

TURBT 1/21/10 at age 55
Dx: T2aN0M0 Primary Bladder Adenocarcinoma
Partial Cystectomy 2/25/10
Vanderbilt Medical Center
Nashville, TN

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7 years 7 months ago #41419 by gailb
I'm not sure if this is the place to do this, but it seems as good as any. I was 48 years old, going through a painful divorce, and reestablishing my life, when I began having recurrent bladder infections and pain. I had gone through decades of interstitial cystitis, but after the birth of my daughter 8 years before, the symptoms seems to get miracously better. Then they seemed to come back. I was treated over and over again for bladder infections until one day I noticed a small amount of blood in my urine. It went away quickly, but at that point, the doctor felt I might have a kidney stone. I began to be diagnosed with a variety of intestional problems and urinary tract malodies. They found c Diff infection in my colon and I went thorugh several horrific courses of antibiotics, which turned out to be important later on. But the blood kept coming. Sometimes it was thick and clotted. I saved a jar of it, and placed in on my GPs desk after she told me I didn't have enough symptoms to see a urologist. She scheduled an MRI for the next day. It was a Saturday. I expected to see stones, but what the image revealed was a large mass. I finally got my referral to a urologist.
Two weeks later, the urologist put a scope in my urethra and pulled it out immediately. "You have cancer," she said, almost lifelessly and flat. I started to cry. We scheduled a cystoscopy for two weeks time. I was assured that most bladder cancer was superficial and that they would "slice" it off. I woke up from surgery in the recovery room where my urologist confided that the tumor was very large and appeared different than any bladder tumor she had ever seen. She told me it seemed to be very attached to the bladder wall, completely. We waited for pathology. I hoped that it was nonmalignant since it looked nothing like bladder cancer was supposed to look. The pathology came back inconclusive, since so much of the biopsy was necrotic and dead. We waited for further tests and she called with unexpected news. Seems my tumor was squamous cell, a rare cancer comprising 5% of bladder cancers. It is slow growing but always muscle invasive. It is also the only kind of cancer that allows for partial removal of the bladder. My doctor arranged a CT scan and we hoped. And I waited some more.
On the day I went to the office to get the news of the scan, I brought my friend Susan. The urologist came in and told me that my tumor was huge - 7cm - and that it was too near the bladder neck to allow for either a neobladder or a partial removal. I was to have a urostomy. When I asked about other continent diversions, she said "maybe." I didn't know at the time she was too inexperienced to do them herself. She informed me that the cancer had not left my bladder, so I would not loose my uterus, vagina or cervix. This also turned out to be bogus advice, but I didn't know that. I got pain killers and downers and waited.
Over the next few days, I got a lot of advice, but the best advice I got came form an M.D. friend of mine who is a cancer survivor. GET TO A TOP 5 FACILITY IN THE COUNTRY FOR YOUR KIND OF CANCER AND DO IT WITHIN 30 DAYS. I began doing research and settled, for various reasons, on Columbia University in NYC. Within two weeks, I was on a plane. When I got to Columbia, I had a meeting with a surgeon who would remove my bladder. There was never any question in my mind that it would need to go. He did a cystoscopy within a few days and reaffirmed that my cancer was squamous and that the tumor was mostly or completely confined to the bladder. We agreed to a radical cystectomy with a continent diversion. Unfortunately, the physician who did continent diversions at Columbia was going through his own health issues. This slowed my surgery down a little until one night, my bladder decided to rupture. I went to the emergency room in Nyack, NY, near where I was staying and was transported to NY Columbia Presbyterian by ambulance. I would not leave this hospital again for over 30 days.
I was taken to emergency surgery to repair my bladder enough to buy time to prepare for the RC. I passed the next few days in ICU where they learned I still had the c.diff. infection in my colon. This made the continent diversion a little more complicated, but not impossible.
Three days later, I was ready for the RC. It lasted almost 18 hours. My bladder was removed, as well as my uterus, cervix and about 1 inch portion of the wall of my vagina. The advice I received at home was wrong - if I had had surgery with my inexperienced urologist, I would have been slowly dying, because cancer cells were found in my vagina and my uterus. The margins were tested while I was on the table and the doctors determined that they had all the cancer. This was reaffirmed by pathology follow up reports.
I felt okay, but something felt wrong in my tummy. I couldn't eat and was fed through a pic line. The pain was increasing rather than decreasing. On the eve of my discharge, it was discovered that I had an abcess the size of a grapefruit in my gut and that it was resistant to all antibiotics they had tested. When I was taken into surgery to place a drain, the infection entered my bloodstream and I went septic. For the next 20 days, they gave me cocktails of 4 antibiotics which caused my one functioning kidney to shut down. They would take me up to the point of dialysis, then stop the worst antibiotic for a few days, then start again. It was horrible.
I was released 32 days later, with a pick line so I could give myself iv antibiotics for an additional 5 days. I could not eat anything, since the more toxic meds had burned my taste buds away. A little food here and there. I had horrible diarrhea. I kept trying to eat. Poached eggs and toast. Peanut butter. Ten days later, I could fly home to the Southwest. I had been separated from my 8 year old daughter for over a month.
I spent those first days confused as to how the catheters worked. I had an Indiana Pouch diversion, and as the tubes were pulled and I had to catheterize, I became filled with fear and almost unable to function. I just hated catheterizing so much. Gradually, I was learning how to do it, but I still hated it. My doctor told me the only thing standing between me and a successful life...was me. He was right. I knew the only way I was going to get home to my daughter was cathing and doing it well, so that's what I did.
I got home to NM in the late fall of 2011. I had spoken with my doctor in NY and had mostly decided against chemo in the absence of further evidence of cancer cells. I was so weak after my bladder rupture and my c.diff. infection that it was not a possiblity until later anyway. I still may do it, but I needed to regain strength first.
My Indiana pouch is working well. Six months later, I have not had an infection or any complication. I cath every 3-5 hours, depending on how much I drink and whether it is day or night. I have become very good at cathing, but it still feels a little odd. I am slowly gaining back strength and am walking and in a yoga class. Some days, the fear of further cancer is there and some days, I feel invincible. Since squamous is the slowest growing of the bladder cancers, we'll just see. I will not be out of the woods for reoccurence for 5 years. I have some symptoms of short bowel syndrome, but no diarrhea or constipation. I take a lot of vitamins. I drink a lot of water and have found Ice brand beverages to be particularly helpful in controlling how acidic my body is.
Cancer gave me a profound experience of God. I think I actually miss the feeling of a divine presence in my hospital room. I am profoundly grateful for my life and the chance to see my daughter grown up. She has needed some therapy to deal with her mom having cancer, but she is doing well and we take each day together as it comes. I was torn between writing something flowery and inspirational and giving nuts and bolts information. I hope I did both. So far, so good. Praise be to God.

Gail
The following user(s) said Thank You: itsamama, teresa56, tcontadino

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