ABLCS Blog

The Visit

One week before your cystoscope, the little man in your head awakens and tries to get the best of you.

      Hey........ its almost time to get checked again!

      I know, just go away.

     But what if its bad news? What are you going to do then?

     It won't be bad news. Everything is going to be alright........now GO AWAY!

     Fine I'll wait until you go to bed and then we will talk again......... See ya soon.

 

 This will go on all week. The best way I have found to deal with this, is to talk to someone, or go on to the Web Site and try to help the others out. Or post your concerns and have them try to help you out.

 Just don't sit there and let him get the best of you.

 

 Now, if your like me you lay awake for most of the night before.

      This is typically when the little guy in your head really starts to do his dirty work. He's not real loud and obnoxious, but he is                  persistent. Just ignore him and get some sleep. 

 

 The day of the appointment goes somewhat like this:

   7:30 You rise and get yourself ready to go.

   8:30 You drive to the clinic........ All the time thinking –- I wish that little guy would shut up.

   9:15 You're in the office registering..... You sit down to wait, and out of no where the little guy creeps back into your head......                                 You now turn to your wife and say …... I would like to go home now.

         She is well aware that this is the little guy in your head talking and calmly says...... no.

   9:25 You are trying to remember if it hurt when they gave you the Novocaine last time or not, when you notice a High-Lights magazine on the table in front of you. Your heart hurts a little as you remember that kids have to come here too.

   9:30 They call out your name.

           Mark!

           Yes. I am here.

           Welcome and how are you feeling today?

           I'm fine. And yourself?

          When really inside you are saying....... I have cancer........ but I feel fine.

Then you think to yourself....... I wounder how I am supposed to feel? I don't look sick..... I don”t feel sick..... But still everyone is worried that I might die.

   9:35 You remove your clothing below the waist and take a seat on the chair next to the cystoscope and wait for the assistant to come back in to numb you up. You are a little embarrassed by the fact that you are sitting on a chair with everything exposed and a girl younger than your daughter is about to grab your pee-pee and pour Novocaine into it.

        Then you think to yourself...... Did I just call it a Pee-Pee?

   9:45 The assistant arrives and is very polite and kind to you as she numbs you up.

              ( I don't think she heard you call it a Pee-Pee.)

          She then tells you that it will be about ten minuets until the Novocaine takes affect. Then the doctor will be right in to see you.

          You politely thank her...... ( for not hurting you )...... and calmly wait for the doctor to show up.

   9:55 The Urologist comes in and greets you. He then starts to insert the cystocope in to your …... okay Pee-Pee.

             You start to feel it and are waiting for it to start hurting, but it doesn’t hurt real bad so you relax a little, then he says “Here's where we turn the corner.” You bridge up slightly as you feel the scope trying to get through the prostate. You start to breath out slowly to try and stop the spasms. Then you feel a sharp pain and its in. (Thank God) You can feel the scope moving around, but its not to bad.

           Then the doctor turns on the monitor so you can see whats happening. BCTV (Bladder Cancer TV) I call it.

           Everything is smooth an clear of tumors. So the doctor pulls out the scope and says the words you have waited three months to hear.......... All Clear.

          Your happiness is only surpassed by the sudden urge to urinate for possible the next ten to fifteen minuets........ maybe longer.

    10:10 The Urologist leaves the room and the assistant tells you its okay to clean up and get dressed. And by the way you can use the container on the counter to void into if you feel the need to.

         And in you head you are saying: If I feel the need to?...... GOOD GOD ….... Please just leave the room NOW!

     10:15 You consult with the Urologist about the visit and set up your next appointment. Then you make your exit, hitting every rest room on your way out. 

 Soon you are home and resting. You still feel the urge to urinate a lot but it's getting better.

     11:30 You get up to urinate again but this time its a bit different than before. It burns a little when you start, and when your done you place both hands on to your ….. okay Pee-Pee. This is when you realize the Novocaine has wore off, and you are on your own. You soon learn that a warm towel, or hot pad feels real good after urinating.

     12:30 You wander back into the bathroom for the One Millionth time. You decide that this time you will just stand and do it. So as you start to urinate, you rise up on to your tippy- toes, then slowly settle back down to the floor once it gets going. This time all the water you have been drinking pays off, and you pee like there is no tomorrow. And when you are done it only stings slightly............ Man what a relief.

     2:00 Finally you are starting to feel normal again and the urge to pee is just about gone.

     6:00 You have told all of your friends that you are all clear and will be back to see them tomorrow........ this is where they all should be cheering....... well maybe not.

    10:30 Off to bead........ you have had a long day and deserve a good nights rest.

    10:35 You hear from inside your head...........PSSSST........ remember me?

                You simply answer: Yes......... and you lost again....... Good Night!

First off let me say I am so sorry any of us have a need for a site like this.

My name is Dennis I am 41 a father to 4 kids , husband , grandfather. I was diagnosed with invasive bladder cancer on Feb 13 of this year. I am lost and confused as is my family and friends. It is march 17th and to this day I have no real usable information about my condition. Please don't take anything I say the wrong way because I am a straight forward person and somethings come out wrong.

Ok so I guess I should start at the beginning . A few months ago I started noticing increased urination and blood in my urin, I didn't think much of it well I did but having kidney stones in the past and the fact that the blood was gone after about 3 hours I chalked it up to stone passing. About 5 months went by with small boughts coming and going with small amounts of blood. On Feb 12th I woke to lots of blood including several large blood clots in my urine. I went pee in the dark and still noticed it and turned on a light because my stream felt blocked then bamm let lose like a big stone but no big clot and bright red urine every place it was a mess. I went to the ER where they went through some normal stuff urin sample and and x-ray of my pelvic area. They really didn't say much but they ordered a CT and the doctor came back and gave me the news, they found what seemed to be a mass and my left kidney was blocked and backing up so it was badly misshapen . They admitted me and intalled a cath, Wow never thought it would hurt so much not a delicate process. After all night of flushing my kidney The doctor informed me and my wife that he did see a mass and I would be going to surgery for TURBT . After that we learned that he had found a large tumor had invaded the muscle wall in my bladder he removed what he could safely . Over the next couple days I had another CT with contrast to see if the cancer had spread I was visited by A doctor of oncology who informed us that I did have cancer he recommended surgery to remove the bladder then start chemo and or radiation but needed to wait until a nephrostomy tube was put in to determine if my kidney was in fact working or not. I was admitted a total of 5 days on the 17th they released me and I had wondered why because they hadn't done the tube. Well they gave me a follow up in 3 weeks with a urologist. I waited and we went to the appointment the doctor was amazed when he realized I was released without the tube. He told us his office would get it scheduled right away. We waited and now this is important at this point. They realized we had no insurance and everything stopped. It took a week of the doctor fighting with the hospital to get me back in as an outpatient but meanwhile I had a appointment with the oncologist who will be treating me. He found that the tube was not in place a freaked to making call after call to get it done. Any how. We sat with Dr. Reed where he explained in little detail that I had a tumor and it was bad and I would have a real fight ahead of me. He changed his course of action for my treatment he said and please these are his words not mine , He is goin to take the same approach as with breast cancer and try 3 rounds of chemo then check for reduction to see if we could save part of the bladder , He had also figured out I had no Insurance. The surgery he was so sure of was not going to happen. I had so many questions for him but was not really given time each question I asked was met with the same answer I asked why his treatment changed , He gave no real answer other than he has been doing this for 30 years but admitted thst what he was tying has only been done for about 5 years. I asked what about the stage or grade of my cancer he gave no answer except it is bad and he really don't know if it has invaded limp nodes or other organs but if it hadn't I would have about 65% chance of a good fight but if it was 4 or more limp nodes about 35 % . I went back to the urologist after my procedure the other day and when I asked him he said he did not agree with my doctor and believed the chemo will be hard on me and a waist of time and he would have referred me to a cancer treatment center where they could better treat me. I told him I was feeling like I was uninformed and on the back burner so to speak and his response took our breathe away he said " I know you do and the fact is you have a really hard fight ahead of you and you are right you would have less than perfect odds with even the best of treatment but without insurance you will not receive the best" We realized we where listening to my death sentence . The reason not the cancer but the self pay label was going to get me first. We felt like crap. We are trying everything to raise money for myself as well as others like us and the problem is every way I try to get financial help for us I get denied. My wife makes a crap wage and is still $132 over what we need to qualify for aid. I was denied for disability and a friend told us it was because the doctor has not staged my cancer if he had I would qualify almost instantly . I am not sure how true that is but she works in another hospital in the financial offices and she seems positive. I am sorry this is so long and thank you for reading it . We are scared I start chemo on Monday and don't even know what I am looking at or what I am fighting and a doctor who has told me it is a waist of time being used because I have no insurance. Here is what gets me we feel this way it has been admitted that I am going to receive substandard care I have an advocate that has not called my wife back all week for us to get answers from the doctor. I don't know how to get him to stage me so I can receive benefits before my family runs out of money to pay bills. I don't even know how bad the chemo is going to be because I can't ask questions from any support groups because I know nothing about what they are going to do. Please someone tell me what to do.

First off let me say I am so sorry any of us have a need for a site like this.

My name is Dennis I am 41 a father to 4 kids , husband , grandfather. I was diagnosed with invasive bladder cancer on Feb 13 of this year. I am lost and confused as is my family and friends. It is march 17th and to this day I have no real usable information about my condition. Please don't take anything I say the wrong way because I am a straight forward person and somethings come out wrong.

Ok so I guess I should start at the beginning . A few months ago I started noticing increased urination and blood in my urin, I didn't think much of it well I did but having kidney stones in the past and the fact that the blood was gone after about 3 hours I chalked it up to stone passing. About 5 months went by with small boughts coming and going with small amounts of blood. On Feb 12th I woke to lots of blood including several large blood clots in my urine. I went pee in the dark and still noticed it and turned on a light because my stream felt blocked then bamm let lose like a big stone but no big clot and bright red urine every place it was a mess. I went to the ER where they went through some normal stuff urin sample and and x-ray of my pelvic area. They really didn't say much but they ordered a CT and the doctor came back and gave me the news, they found what seemed to be a mass and my left kidney was blocked and backing up so it was badly misshapen . They admitted me and intalled a cath, Wow never thought it would hurt so much not a delicate process. After all night of flushing my kidney The doctor informed me and my wife that he did see a mass and I would be going to surgery for TURBT . After that we learned that he had found a large tumor had invaded the muscle wall in my bladder he removed what he could safely . Over the next couple days I had another CT with contrast to see if the cancer had spread I was visited by A doctor of oncology who informed us that I did have cancer he recommended surgery to remove the bladder then start chemo and or radiation but needed to wait until a nephrostomy tube was put in to determine if my kidney was in fact working or not. I was admitted a total of 5 days on the 17th they released me and I had wondered why because they hadn't done the tube. Well they gave me a follow up in 3 weeks with a urologist. I waited and we went to the appointment the doctor was amazed when he realized I was released without the tube. He told us his office would get it scheduled right away. We waited and now this is important at this point. They realized we had no insurance and everything stopped. It took a week of the doctor fighting with the hospital to get me back in as an outpatient but meanwhile I had a appointment with the oncologist who will be treating me. He found that the tube was not in place a freaked to making call after call to get it done. Any how. We sat with Dr. Reed where he explained in little detail that I had a tumor and it was bad and I would have a real fight ahead of me. He changed his course of action for my treatment he said and please these are his words not mine , He is goin to take the same approach as with breast cancer and try 3 rounds of chemo then check for reduction to see if we could save part of the bladder , He had also figured out I had no Insurance. The surgery he was so sure of was not going to happen. I had so many questions for him but was not really given time each question I asked was met with the same answer I asked why his treatment changed , He gave no real answer other than he has been doing this for 30 years but admitted thst what he was tying has only been done for about 5 years. I asked what about the stage or grade of my cancer he gave no answer except it is bad and he really don't know if it has invaded limp nodes or other organs but if it hadn't I would have about 65% chance of a good fight but if it was 4 or more limp nodes about 35 % . I went back to the urologist after my procedure the other day and when I asked him he said he did not agree with my doctor and believed the chemo will be hard on me and a waist of time and he would have referred me to a cancer treatment center where they could better treat me. I told him I was feeling like I was uninformed and on the back burner so to speak and his response took our breathe away he said " I know you do and the fact is you have a really hard fight ahead of you and you are right you would have less than perfect odds with even the best of treatment but without insurance you will not receive the best" We realized we where listening to my death sentence . The reason not the cancer but the self pay label was going to get me first. We felt like crap. We are trying everything to raise money for myself as well as others like us and the problem is every way I try to get financial help for us I get denied. My wife makes a crap wage and is still $132 over what we need to qualify for aid. I was denied for disability and a friend told us it was because the doctor has not staged my cancer if he had I would qualify almost instantly . I am not sure how true that is but she works in another hospital in the financial offices and she seems positive. I am sorry this is so long and thank you for reading it . We are scared I start chemo on Monday and don't even know what I am looking at or what I am fighting and a doctor who has told me it is a waist of time being used because I have no insurance. Here is what gets me we feel this way it has been admitted that I am going to receive substandard care I have an advocate that has not called my wife back all week for us to get answers from the doctor. I don't know how to get him to stage me so I can receive benefits before my family runs out of money to pay bills. I don't even know how bad the chemo is going to be because I can't ask questions from any support groups because I know nothing about what they are going to do. Please someone tell me what to do. I have started a youtube video diary to keep people up to date on progress and the only videos I can make are angry videos about how I am being treated. If you would like to help me go to youtube look up cancerfight36618 and subscribe and watch my videos and pass them on they don't pay much but every penny counts.

Humor as a tool to healing

I could tell you so many things about the terror, pain, humiliating procedures and sheer tedium or having cancer but that would only be half the story. When I was diagnosed with Bladder cancer I remember the terror. The day after my biopsy I went to my computer and looked up Invasive Bladder Cancer and this is what I read “The standard treatment is a type of surgery called radical cystectomy, which removes the bladder, together with nearby lymph nodes and adjacent pelvic organs. In men, this procedure includes removal of the prostate gland and seminal vesicles. In women, it includes removal of the uterus, fallopian tubes, ovaries and part of the vagina.” I couldn’t breath to scream. When my personal physician called with my pathology result we both cried. When my Urologist said “you do know that you may die no matter what we do?” I to this day am still searching for the appropriate answer to that one.

At forty seven I learned I was more worried about how I would die that when. Would it be with dignity, could I handle the pain? If pressed I could tell you the nitty gritty of twenty trips to the infusion unit and forty to the radiation. I could tell you the side affects and what that does to a body. I could tell you about being in surgery seven times in a year. And I could tell you what it is like to try to retain you dignity when you are a thing on a slab in a teaching hospital, with your most private parts probed and seen by the world. Yes I could tell you many things but they would not be changed by the telling.

The other half of the story is this. I have sat taking chemotherapy with a woman who knew she would not see this Christmas with her children, and laughed until we cried about silly things. I have seen bald headed children laughing and playing as if the world was right toting their IV poles around the infusion unit. I have read things in chat rooms and list servers form other survivors that would hold no humor for others but make me smile because I know where they come from. I have found humor in things I would have been appalled at a year had a half ago. I have made jokes about glowing in the dark, being bald, bodily functions and a few things better left unmentioned. And in that humor I have found hope. The human spirit is stronger than the cancer. I really have no choice about what happens to me in the future. But I do have a choice how I handle it. Do I sit around and cry the rest of my life about what a rotten hand I have been given? Or do I find joy and laughter given the opportunity? I would think the answer would be obvious, what a waste to cry when you can laugh. And I think that is the most important part of the story.
 

 

Learning to fly upside down while enjoying the view

While going through cancer treatment I have came to use writing as a type of therapy. It grants me the chance to put what happens to me into an order that some how gives it meaning to me. It gives me license to be a drama queen to be totally irreverent if I please and to say things I could never say to the people I love because I would worry about upsetting them. Looking back on the last two years as crazy as it may sound I have came to recognize the fact that the cancer has been one of the most incredible chances I have ever had for personal growth. It has taught me how precious every day is, that passing up the chance to experience joy is a grave sin and that most of us never notice how blessed we really are because we are blinded by the petty occurrences of everyday life. Who would ever think that good could come from something so terrible? But then life does have a way of surprising us when we least expect it, doesn’t it?