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Could Sure Use Some Friends with Funny Bones (@_@)
I just signed up, and i’m already confused. I was first diagnosed Dec 2012. I live near Loma Linda, so that’s where I went when the blood clots came on. Icks.
My urologist, a brusque doc I call No ho-ho Ko performed a cystoscopy, and let me see the one lone tumor. it was the sea fan kind (kind of mesmerizing, really), and I asked him where Nemo was. Not one ho. Nothing at all, though the nurse snorted a bit. This would make me a not so newly diagnosed BC person, but i didn’t find this site until today. I had a transitional resection Jan 21, stayed overnight, and so was able to go home without a cath. Yay me.
Aside: would it kill them to just call it tumor removal? Really? This is worse than ordering a small coffee at Starbucks.
Back to business. I already put some of this post on GlobalGuy’s thread, as I consider him awesome. Meanwhile, back at the ranch, I went in for my first follow-up May 21 and NHH Ko found another sea fan, and this time it brought friends. Some are flat, and appear to be in the same general area (close to the left ureter, yikes!)
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I read that some transitional rumors can be flat, so I hope these are that type. I am once again scheduled for a small Starbucks coffee, in and out, in just a few hours. I kind of could tell the cancer had returned, as I had been having backaches and lower pelvic pain just weeks after Jan. The tumors must have started up right after the first surgery. Bastids.It seems like the pain is worse this second round. Has anyone had this symptom? Is it bad news, or just me getting morbid?
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.
Any ideas on what I could finesse to qualify for an overnight stay? Aside from having a deadly disease and all. And not especially seeing the wisdom in going home with a painful, newly cauterized bladder that may become infected from self-cathing? Words fail me.
Last time i stayed overnight, but only because i had a hysterectomy at the same time. Alas, I am fresh out of uteruses.
My hubs Dave is swell, but bless him, he is a man, only a man. That said, realistically most I should ask hubs to do at home is to leave me in bed with some drugs, saltines,Jello, and a walker. Actually, he could redeem himself by building a motorized rope tow to the toilet. He CAN cook, well grill, but only creatures and corn on the cob.
I absolutely do not want my girls to have to deal with cancer mom, except to kiss me goodnight. They already had to deal with cancer dad three years ago, and I saw the emotional fear they went through. Luckily, he is cancer-free since then.
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.
Any advice? Any recommendations? I really do want to travel, even if is solo, but my driver’s license has been suspended due to epilepsy. Bummer. Even so, I will manage if I can get around by planes, taxi, shuttle, bus, or mare’s shanks.
Schmoochies – Mercedes
– We will cure this dirty old disease. Well, if you’ve got the poison, I’ve got the remedy.
The remedy is the experience…I say the comedy is that it’s serious…
I say the tragedy is how you’re gonna spend the rest of your nights with the light on.
So shine the light on all of your friends, when it all amounts to nothing in the end.I won’t worry my life away. I say, I say, I won’t worry my life away!”
– Jason Mraz, “The Remedy”, written for his friend with bone cancer.
His friend is doing just fine these days.More lyrics: http://www.lyricsmode.com/lyrics/j/jason_mraz/
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11 Replies
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Hi, y’all
MsPeevish here.i am moving my future threads to the non-invasive category, see you there, I hope.
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Hey Mercedes… I as so sorry you are still in so much pain. To add to what Sara Anne said, people here have mentioned that having the stent can cause quite a bit of discomfort also. And I agree, if you are still in pain, definitely let Dr. Gill’s office know first thing on Monday… they do want to know these things!
I am also saddened to hear of the loss of your dear friend, Mark. You, Annie, and her girls will be in my thoughts. Take care of yourself and I wish you a pain-free week ahead. Yes… we join you in hating this cancer sh*t!
Best wishes… CatherineTURBT 1/21/10 at age 55
Dx: T2aN0M0 Primary Bladder Adenocarcinoma
Partial Cystectomy 2/25/10
Vanderbilt Medical Center
Nashville, TN
I think that you had a second TURB? It was probably much more thorough than the first, since they knew where the problem areas were and wanted to get deep enough to be able to tell exactly what they were dealing with. Therefore, it is not unexpected that the pain might be worse. If it still troubles you by Monday, I would certainly let Dr. Gill’s office know.
Sara Anne
Diagnosis 2-08 Small papillary TCC; CIS
BCG; BCG maintenance
Vice-President, American Bladder Cancer Society
Forum Moderator
Hi, SaraAnne and Catherine:
I feel I have two good friends than I had a few weeks ago, and I want to thank you for that.
Update–I decided to switch docs to Dr. Gill at USC, especially after spending almost an hour with his PA. Dr. Gill agreed to see me on his day off, as soon as he landed from Amsterdam. They both spent time with me, and assured they treat me like their USC family, and I have to say, that they have.
I have considerable pain this time. Was not expecting that, since the first TURBT (?) didn’t slow me down at all. I got Detrol-LA for what they think is spasms, and this helps, but there is still other pain that is not spasms, and it hurts me enough to keep me awake at night. At the hospital, they gave me IV Dilaudid for this, so i am so aware of the difference. Now, at home, I can only get the Detrol-LA and baby Norco (5 mg).
Has anyone else gone through this? The difference between now and the last treatment is the multiple (7) tumors, some near my ureter which required a stent, and the mytocin wash. I should add that I am not a total wimp when it comes to pain, but this is bad. Should I continue to harass Dr. gill’s office on Mon, or just hug my heating pad? Something tells me that the energy would be wasted, since the FDA makes it next to impossible for docs to prescribe opium derivatives outside of the hospital environment without ridiculous scrutiny.
And now for something completely different, but even sadder than my pity party. My beloved Annie’s husband, Mark, died just before I went into surgery. I only found out on the way home, and my crappy timing is keeping me from her and her girls. She is my best friend in the whole world. She totally understands, but I hate it that she has to be even the smallest bit concerned about me, when she has just lost her husband and her girls have lost their father. I hate this cancer shit.
Wah, wah, wah. Bad day.
Mercedes
Absolutely FABULOUS news about your visit with Dr, Gill. Didn’t we tell you that USC/Norris was the place to go!! You KNOW that you are in good hands now, and can relax (somewhat) and know that you will be getting the best treatment available.
So sorry to hear about your friend. It IS hard to have someone leave.
Sara Anne
Diagnosis 2-08 Small papillary TCC; CIS
BCG; BCG maintenance
Vice-President, American Bladder Cancer Society
Forum Moderator
Hey, Y’all!
Good news and sad news.
First, the incredible fantastically awesome good news. Turns out Dr. Gill is the same Dr. Gill we know frkqqii,q,qkom the Cleveland Clinic, but now is at USC Norris. The Gods are speaking for ol’ Merc, they are.
I went to the Loma Linda pre-op last week, and asked again for pain meds to no avail, as the grimKo was either in surgery or hiding in the toilet. As soon as I got home, I called Dr. Gill’s nurse, Blanca, and whined to her about everything. She told me that he is only working Mons and Weds the next two months or so, and lecturing world-wide in between. After a second, she said she would call me back if she could talk Dr. Gill into seeing me in three days, a Tuesday. So, guess what? She calls him in Amsterdam (!), and he agrees to drive over directly from the airport, to see me. Is this man a God or what?
I go in with the one paltry page of Ko notes from my last cystoscopy (of course, the only record available on such short notice, and 25 cents a page at that). Dr. Gill was politely horrified at the lack of coverage and detail given under my circumstances, and offered to schedule me for surgery June 12. As he left, he turned back and shook my hand and told me that he now considers me to be family at USC, and will be treated like family should be. OK, sniff. Got to me. Awesome human, awesome doc. And best of all, we spent at least 15 minutes just trading war stories and LAUGHING. Take that, you Ko you.
Now I have really sad news. My bestest friend in the whole world is Annie. She is one of the good ones. Her husband Mark, was diagnosed with BC, with mets to the lungs, bones and kidneys. Basically, cancer of the everything, with absolutely no symptoms. He was originally diagnosed in Feb, and probably will not make it much past the next two months. Fortunately, they have lots of family and friend support, and I will visit for a few days as soon as I can. Although Mark isn’t eating much these days, he has always found my burnt meatloaf delicious. Being of Welsh descent, my go-to recipes all end up cooked to the grey or black stage, and covered with something lumpy. Mmm-mm-mmm.
Must go now, falling asleep. Wish Mark a peaceful journey home, and I will write again soon.
Schmooches – Merc
I do not know Dr. Gill personally, but know of several people who have seen him and he is very highly thought of. IMHO, since you are going to USC anyway, I would (assuming you like it there) move all my care there. Especially if you are
having a second TURB. It would be MUCH better to have that done by the doc who is going to be treating you, since he will be much more confident of his own diagnostic procedures.No patient should put up with treatment that they do not feel comfortable with.
Just a few months ago I was scheduled for shoulder surgery (rotator cuff) at a place that treated me like a number and with a doctor I saw for about 60 seconds during my visit. Got home and it just felt wrong. I cancelled the whole deal, moved to a different doc in a different practice. Turns out he didn’t think I needed surgery. Now six months out with physical therapy…no pain. We MUST take charge of our care and not accept sub-par treatment.You are my current hero for going elsewhere.!!!
Can’t wait to hear how your visit at Norris goes!
Sara Anne
Diagnosis 2-08 Small papillary TCC; CIS
BCG; BCG maintenance
Vice-President, American Bladder Cancer Society
Forum Moderator
How irritating it is to feel ignored when you have major issues going on! I have seen Dr. Gill mentioned on the forum and he is very highly regarded if it is the same person. I am very happy you will be seeing him on Tuesday!
Have you had any scans during all this process? I hope you can find some relief from your pain.
It is very important to feel good about the doctor who is treating you. If you are unhappy with Dr. NoHoHo or his staff, this might be the time to think about a change if you like Dr. Gill better.
Spleen venting is encouraged here… better than stewing on the inside! ;)
Best wishes… CatherineTURBT 1/21/10 at age 55
Dx: T2aN0M0 Primary Bladder Adenocarcinoma
Partial Cystectomy 2/25/10
Vanderbilt Medical Center
Nashville, TN
Merde.
Lost my almost completed post. I will see it with the lost socks in heaven.
Anyhow, time to vent my spleen.
My last follow-up at Loma Linda, having revealed yet another sea fan and some buttons, was on May 21. NHH Ko was his usual sparkling self. I now have a pre-op appt next Mon (6/3), and aTURB / IC the following Mon (6/10).
When Ko’s nurse asked me if I was having much pain, I allowed as to having tiny little Nazi storm troopers marching across my left lower back and bladder area, whenever I get up from a chair or climb stairs. Unhappy face. I asked for pain meds and was told that Ko’s nurse would handle it.
So we wait, and we wait, and last Monday, I scheduled a pre-op for this Mon, and surgery the following Mon. Again asked for pain relief. Again transferred to nursey and had to leave a message.
And we’re waiting…and waiting…still waiting…so yesterday I call nursey and find out my message fell through the crack, Ko wasn’t in the office, and they would call him and call me back.
You can guess….I got through the night, and called 1st thing this morning. They said they would take care if it and call me right back……… ……….. ………… :/( .
They called back at 1:00and told me that Ko said that I should just take Tylenol until the surgery.
WTF??! I have recurrent and increased bladder cancer, He is planning surgery in 10 days, and he won’t allow me pain meds until then? Tylenol, really? I might as well take a Pez.
So, I am going to USC to see Dr. Gill next Tuesday, after the Mon LLU pre-op and hopefully he will be a human bean. I am so tempted to switch docs for this reason alone, but will wait to see if things could possibly be worse at USC. Dave’s urologist is also at that LLU office and has had major grief getting apps.
Sorry for the crab fest.
Schmoochies. – Merc
“I’m not going to worry my life away!” – J. Mraz
Hi Mercedes… I’m not sure how well my funny bone is functioning at this late hour for formulating a coherent response, but reading your post (as serious and detestable as bladder cancer is among us) had me laughing out loud. Your funny bone is certainly firing on all cylinders!
I think Sara Anne covered the basics in her reply. I can only add that having a catheter is certainly tolerable for a bit after your TURBT. You don’t have to do anything to it… it just drains out into a leg bag or night bag. I would prefer that to staying overnight in the hospital provided you are feeling OK otherwise. I went home with one after my “tumor removal”, went back the next day and they removed it since I had no bleeding. Depending on what they do in there, some people have more bleeding than others afterward and the catheter bag actually helps keep an eye on how much, if any. Just remember if you see little puddles on the floor, after reprimanding the dog, check to see if you closed that little valve on the bottom of the leg bag… don’t ask me how I know!
After my BIG surgery (partial cystectomy) I had a catheter for nearly a month while the bladder healed back together. While inconvenient, I learned to think of it as my friend because it meant I still had a bladder that needed to drain. That helped me keep things in perspective.
You are definitely on top of the situation with the 2nd opinion and pulling all your doctors together to work as a team as needed. Let us know how things go with your reports. Also I am happy that your husband is cancer-free after three years. Yay him!
Best wishes… Catherine
(And I am really relieved they DIDN’t find Nemo in there!)
Best wishes… CatherineTURBT 1/21/10 at age 55
Dx: T2aN0M0 Primary Bladder Adenocarcinoma
Partial Cystectomy 2/25/10
Vanderbilt Medical Center
Nashville, TN
First, sorry that you had to join us, but welcome anyway!! You are doing ABSOLUTELY the right thing…and USC-Norris is one of the premier bladder cancer centers in the US.
Now to address some of your issues…I have never stayed overnight for a TURB. I do know that some people, usually male, have problems with catheters (as a female I never needed such a thing) and do stay. My philosophy is to GET OUT OF THAT HOSPITAL as soon as possible. The longer I am there, the more germs I am exposed to. I just want to go home, close the door, and get over it. But that is me.
Most low grade transitional cell bladder cancers are papillary, or the kind that sort of stick out into the bladder like a mushroom. These are easily removed during a TURB …the problem is that they tend to recur. One type of “flat” tumor is more like a rash on the surface of the bladder and is called CIS or carcinoma in situ. This you would rather NOT have as it is usually high grade, meaning it can spread rather rapidly. This is what they found on my second TURB. I then had BCG treatments (there is lots of information on this in the Forum, but you don’t need to read it yet!) and am now five years out and still clear.
Your urologist is doing absolutely the right thing in scheduling you for a second TURB. There have been clinical studies that show that, even in the very best centers, often things are missed the first time. The second time, the uro has a better idea of where to concentrate.
You didn’t mention how old your children are. Often children can sense that there are problems in the family and their fears (particularly since yours have already had to deal with cancer in their father) can be worse than reality. I guess my advice would be to share with them that there is a problem in your bladder, and that the doctor is right on top of it…all your visits should prove that he is taking good care of you. You don’t need to go into further detail unless their ages/understanding require it.
Wishing you the very best and please feel free to ask any questions as they come up. Again, I commend you on going to Norris…and sorry that I can’t recommend an overnight stay!!!
Sara Anne
Diagnosis 2-08 Small papillary TCC; CIS
BCG; BCG maintenance
Vice-President, American Bladder Cancer Society
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