ABLCS Blog

I haven't been on this site since my father's initial diagnosis. But he had his surgery to have the tumor removed on 11-28-12. We just went to the doc this morning for the post op follow up. The cancer is stage one, it HAD NOT penetrated the bladder wall and they removed it all. He will be rechecked ever 4 months for a year then yearly. I am truly blessed and thankful for this outcome and I thank you all on this site for your information and support and will continue to pray for positive outcomes for you all. Merry christmas, happy holidays and the healthiest of new years!

Warm regards,
TinaMarie

Well its November and I am about to have my fifth treatment this coming week. Had a very bloody urination in August and it all started from there. Trips to the hospital, trips to the doctor, surgery and more surgery and not BCG treatment 4 down and 2 to go. I am here to say I am scared stiff about what is to come I hope I am clear but I have my doubts, I was shocked I had cancer in the first place. One thing I know for sure my wife has been my rock, has been my godsend, she has been my angel!! I am blessed.
This is my first attempt at a blog, so I will leave because I need to go, well you know, I have to pee...
Have a wonderful Monday

Bad Bladder in Boiling Springs

I am my mother's daughter. Mom was diagnosed a few months ago with bladder cancer. I think it was classified as T3. We were told it had invaded the muscle of her bladder, but there were no signs it had progressed further. My mom is 86 years old. However, she's no typical 86 year old woman. She lives alone, by choice, and has been on her own since 1979 when my dad died of a heart attack. I'm fortunate that no one in my small family ever moved away, so I have two brothers and a sister who all live nearby mom and have always been close to each other in our hearts.

Mom is a retired school teacher. And still, to this date, we occasionally have someone walk up to us when we are out who remembers her and what a great teacher she was. I find it amazing that people remember a teacher after so many decades. Anyways, Mom stays very busy and is in pretty decent physical shape for a woman her age. She still drives, makes beautiful quilts, knows more about computers than I probably ever will, is very politically active, is involved in League of Women Voters as well as some groups for retired teachers. And I must admit that she's one of the smartest women I've ever known :-) She always complains about never having enough time to do everything that she'd like, but at the same time, I think that's what has kept her going for all these years.

The trip to her diagnosis began with a weight loss and a battery of tests checking every part of her body. Everything turned out well on those tests, and then she began feeling like she had a bladder infection. She was given some meds for that which didn't seem to clear it up. Then she began seeing blood in her urine. The urologist did a cystcopy and reported a golf ball sized tumor in her bladder. Next he performed a day surgery to remove the tumor, and we waited to hear the pathology report. He said that the cancer had invaded the muscle of the bladder, but he saw no evidence that it had spread further. He recommended her to an oncologist.

I went with her to the meeting with the oncologist who said she could do some chemo followed by a short period of strength building and then surgery to remove her bladder in December. Since mom is in relatively decent health - she didn't feel like a "do nothing" option was something she wanted to consider at this point, so chemo has begun after a port was placed in her shoulder in which the chemo, blood tests, etc would be administered. After four treatments of chemo, one short of the first cycle being completed, her platelet counts were too low, so instead of the last chemo of that cycle, they gave her a blood transfusion - I sat with her for the whole six hours.

I've been doing some research on this surgery they want to do in December...both the urologist and the oncologist have stated that this is a HUGE surgery, and not only will they remove the bladder, but will basically do a hysterectomy as well. I assume that is in case any cancer cells broke loose during the removal of the tumor - so as a safety measure. From responses I've received from the good and supportive people here, I've found that even for people 60 or 70 years of age, the recovery from such radical surgery can take up to a year. So mom is now wondering and rethinking whether surgery will be an option for her. She figures that she only have a certain number of years left anyway being that she is 86 now. And she isn't sure she wants to spend a year or more recovering from a major surgery and having to pay someone to assist her in her home with the basics of daily living - when she has been such a vibrant and independent person up to this point. So I'm going to talk to her over the next few days about going back to the oncologist to see if there are some options greater than "doing nothing" and "doing everything" that could still give her a few more years, while at the same time, giving her the option to keep her quality of life somewhere around where it is now.

So that's where we stand now and the background of my story. What I wanted to write about here is the fact of losing my mother and how to cope and deal with all this. Along this way so far, mom has asked us, her children, to remain "cheerful." And the atmosphere around her any time we are gathered together or just one-on-one - cheerful is what she gets. At the same time, my heart is breaking at the thought of losing my mom, and especially of losing her to such a cruel disease such as cancer. Of the four children, my schedule with work is the most flexible, so I have gone with her to every doctor appointment - the surgery to remove her tumor - the first visit to the oncologist - the placement of the port into her shoulder, and so on. I almost feel compelled to be at every event, and I'm not sure why. I have found that the time I have spent with her are some of the most precious time I can recall spending with her. I wonder if my insistence of being with her for every event is my way to trying to accept the reality of the situation.

Today, I received an email from my younger brother stating that he is angry, but doesn't know who to be angry at. It was heartbreaking.

I've felt for about a decade now - that one of the nicest things about growing older is that all of life's biggest questions have been answered - who I will marry, where will I live, how I will be financially, where I will work, you know - all the things you wonder about when you are young. Life has been very good to me, and I felt there would be few, if any, big surprises left or things I hadn't experienced - until now.

How does one cope with the loss of a mother. This is the one person, in my entire life, who has loved me UNconditionally - through all of life's ups and downs - through all the hard times and good times - the one constant in my life - MOM. Even though we all know that, at one point or other, we will lose our parents. My husband has lost both of his in the past ten years. But I cannot even begin to even consider my life without my mother in it. And I have no idea how I will do this. Right now, I'm only trying to get through one week at a time, make the most of it, and worry about next week once it arrives. As I sat beside her Tuesday while she was getting the transfusion - she snoozed a while and I just watched her sleep. Memories of the past came flooding back, and a few tears rolled down from my eyes. This is so very, very hard for me. I don't know how I can go on with life when I am no longer anyone's little girl. I love this woman so much, and my heart is slowly breaking.

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!

I am so glad that this site is here for those that are dealing with this type of cancer. I would not be writing in this if my husband had not been diagnosed with bladder cancer. He happened to be working across the country since October when around the 30th of January he had blood in his urine. He made the right choice by calling his doctor. It all snowballed from there, tests were done and he was diagnosed with bladder cancer. He was called on his birthday March 2nd and informed he had the cancer. We have had the greatest doctors available for him, they removed his bladder, prostate and 40+ lymph nodes - the doctors then made him a new bladder from his intestinal track. Everything is working out very well, even thought it is going to be a very hard time for recovery. He has to learn to pee again and often, but at least he can go. After the surgery while still in the hospital we were also informed that he had prostate cancer. I have always believed in God but this really made me realize that He really cares and will take care of you. I am so thankful that it was all gotten and was not in his lymph nodes.

On November 21, 2011 I had my bladder, prostate, appendix and lymph nodes removed because of bladder cancer.
I now have an Indiana Pouch, which I cath through a stoma where my belly button used to be.
Every three to 4 hours, the rest of my life, I will have to endure this new form of bodily waste function.
But, as others point out consistantly, "At least I am cancer free, and alive"

No matter what life may have for me from now on, regardless how that life may be, only my attitude, and my opinions can dictate how I advance or fall.
Only I can decide what my normal will be.
All I know, is life will never be the same.

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.

   When I first heard the news "you have cancer," I was the mother of a 8 year old girl barely coping with her parents' divorce, which had been final less than a month.  I had no idea what to tell her.  At first, I sat her down and said something like "mommy has something inside her that doesn't belong there and the doctors are going to have to do surgery to get it out."  She seemed to accept that.  But at church a few weeks later, it was published in the bulletin that I wanted prayers for my recent cancer diagnosis.  I knew that now, she would find out anyway and I couldn't let her find out from someone else.  We were driving home when I told her that I had cancer.  She, of course, immediately panicked.  "Mom, you have CANCER.....you can't have cancer."  You get the picture.  After some talking, I convinced her that while I was going to need to have surgery, that I would be fine.  The next 3 months were a nighmare of surgeries, complications and a diagnosis of stage 3a cancer.  Luckily, I had no lymph node or other metastasis and the doctors were able to get all the cancer through an RC and a radical hysterectomy.  My baby spent the time I was in the hospital with my family and with her father.  He showed real class by remarrying with a few days notice while I was in the hospital, to a woman my daughter had met only a couple of times.  She managed to roll with these punches, and to continue to function well.  But I could tell something was wrong.  We talked every day when I was hospitalized and convalescing nearby.  Sometimes we skyped.  It gave me a reason to fix up and put on makeup.  When I got home, she moved into my room in case I needed something at night.  In fact, I got up every two hours to empty my pouch, and she slept through it all and cuddled up when I got back to bed.  It was clear that she needed some therapy to feel secure again.  It has been six months now since I have been home.  So far, so good as to the cancer.  My new fake bladder, as I call it to her, is doing well.  If you have had a continent diversion of any type and wonder what to tell your kids, I would say answer questions honestly, but don't push information they are not ready for.  It was a couple months before she asked what the catheters were for.  She would walk in to the bathroom when I was in the Jacuzzi and notice the tape over my stoma and would ask what is under there.  Eventually, she wanted a look.  She said it looked like a second little belly button.  After that, she never asked again...she had figured out enough to be satisfied and didn't feel a need to know more.  We use the term "pit stop" for cathing, since it takes a little longer for me to go to the bathroom.  She is concentrating in school as she did before, but this took several months. 

   If anyone were to ask me about cancer and their kids, I would give the following advice:

   1. Don't lie to them as the feeling of powerlessness in the face of cancer is bad enough, and they don't need to deal with the feeling of betrayal too.

   2.  Find good child care during the worst of surgery or treatment.  You need to concentrate on healing yourself.

   3.  Understand that you aren't the only one affected by cancer - your child, whatever their age, is affected and they will have anxiety and grief, just like you.  Give them space and permission to grieve. 

   4. Any child going through a parent with cancer needs a support group or therapist who can help him or her through it.  You can be many things to your child, but you cannot perform this function.  They need a safe place to say things like "I'm scared my mom is going to die." 

   5.  Cancer will make you appreciate your life and your kids so much more.  During my long RC hospital stay of 32 days, I would dream of driving Kathryn to the bus stop for school and fixing her lunch.  The first day I did it was so special.  You may find you want to take a cruise or a trip once you are cancer free or stable.  Take it.  Dip in savings if you have to.  Make memories with your child.  That way, no matter what, cancer will not defeat you as a parent. 

   Good luck, mom, dad, grandma and grandpa.  You got this thing.  You can do it. 

It started about 6 and a half years ago.

I noticed that I had been going to the bathroom allot more than normal, then one day I started peeing blood. Not just a little but bright red and clots. So I went to a doctors office and the nurse practitioner said it was a infection. She gave me antibiotics and told me to come back in 2 weeks. The bleeding went on and off for about 6 months.

My wife is a nurse for a privet practice. I was at her office one day and she mentioned something to her boss about it. She did a urine test for blood, made a phone call, and told me to go across town to this uro that she knew, he would be waiting for me. That was 10:00 AM. He scoped me and said I had 5 tumors and it was cancer. He sent me for x rays and ultrasound and by 2:00 PM I was in surgery. By 5:00 PM I was at home saying what the heck just happened. Went back the next day to get the cath removed and started BCG. Did that for 6 weeks an d started my 3 month check ups.

I have had 6 surgeries for bladder cancer.

I found ABLCS about a year ago and have been here every sense. I consider everyone here friends, and don't know what I would do with out you all.

In 1987, my first daughter was born. This was one of the greatest days of our lives. We called my Mother and Father to tell them the news. Next we called my wife' s Mother and Father, and then we called everyone we could think of. { NOTE: The internet wasn't ready yet.}

I remember sitting in the waiting room with my Father. I felt so secure and strong just knowing he was there with me. He would doze off and take a nap every so often as the two of us waited to go inside and see my new family member. I could tell he was very tired. I thought, man he must have had one heck of a tough week to be this tired.

It wasn't long after that day he told me he had been diagnosed with Stage 4 Bladder Cancer, and had been under going treatment. He told me it wasn't the worst stage and that the doctors are sure they can cure it with a little more time.

All I said was, "Oh Thank God. Well Dad, let me know if there is anything I can do to help."

Later my Mother called me at work and asked if I could meet her at the hospital. I said I could after my shift was done. When I finally met with her she told me that Dad would need to be driven to Iowa to get more treatment. She explained that the doctors there are specialist, and that I shouldn't worry because they will fix Dad right up.

Shortly after that day, my mother called me at work again. She asked if after work I could stop by the farm. My heart stopped beating, and I took a slow breath and told her that I would be right up as fast as I could. As I drove the tears filled my eyes and the fear set in.

When I reached the drive way I could see several cars. I parked in the yard and ran into the house. My Mother was busy helping Dad move in his bed so he wouldn't hurt so bad. Close friends of my family were there to comfort her. My Mother was so polite to everyone, but I could tell she was about to break down. I asked the guests if they could leave us alone tonight, and told them we would call them as soon as anything happened.

She asked me to sit with my Dad as she took a bath. Dad would wake up for a little bit and talk with me as if nothing was wrong. I would choke back the tears and talk with him until he fell off to sleep again. Once he asked my why I was crying. I told him it was because I knew he was going to die. He took my hand and held it tight and said, "Don't you fear my death. I will be just fine. You need to stay here and help the others get through this." Then he smiled and fell back to sleep.

At around four in the morning my Mother woke me and said, " Honey, Daddy is gone now. You should come down stairs and help me with things." She was so calm and peaceful as we set about the task of contacting the police to come. I sat along side the bed watching out the window to the road waiting for the hearse to come. I wanted to be with his body until the very end.

I will never forget that night. I never have gotten over the fact that he didn't seek help from the doctors sooner, but I understand how he felt now. After I was diagnosed with bladder cancer I could only think "How do I tell the children".
But after going through it with him I knew to be calm and straight forward. Show them how this is to be done and let them know just what they should do.

But most importantly tell them you love them. Because in the end that's all that really matters.

 

My journey with bladder cancer began about four years ago. I kept having "Urinary Tract Infections", over and over and over, and my internist kept prescribing antibiotics again, and again, and again. I was overdue for my pap smear and went to a new practice, recommended by a friend, where I was seen by a wonderful nurse practitioner. I happened to mention the recurrent "UTIs" and she firmly told me that, if you have more than three UTIs in a year, you go to a urologist. She recommended a practice nearby, and even told me which of the five urologists there to avoid!!!

Sure enough, a few weeks later, another "UTI" had me calling the urology practice, where I took "potluck" from the recommended doctors. Here LUCK stepped in, and I met my urologist, Dr. Janoff, who had trained with the best, was young and whose personality fit mine perfectly. First, he ascertained that I did NOT have a UTI even though I was symptomatic. Cystoscopy showed a lesion in the bladder. TURB led to a diagnosis of low-grade papillary carcinoma, but Dr. Janoff had some questions about some "irritated" areas of the bladder. A few weeks later, a second TURB confirmed his suspicions of CIS.

Now, after a complete course plus maintenance of BCG (at continually lower doses), I am still doing great. All my horrible "UTI" symptoms are gone and I recently graduated to 6 month exam intervals!

Lessons to be learned from my experience? Repeated symptoms of urinary tract infections are NOT to be ignored. This was the only symptom I had....NEVER had any blood in the urine, microscopic or otherwise. Find a urologist who is an expert in bladder cancer (here I just had good luck...REALLY good luck).
Many urologists see primarily men with prostate issues...or, if they do specialize in women, it is for typical incontinence problems. To find someone really GOOD in bladder cancer treatment is VERY

I came to this site, knowing nothing about bladder cancer...in fact, I often joke, that I never even knew I HAD a bladder! At first, of course, panic set in ...I kept telling myself that at least, now I knew what I would die of! This site provided so much information...it took several tries before I was able to digest most of it. But it was the people here who made a big difference. I felt, and still feel, that there is an army of friends who are holding my hand as I walk through this.

Sara Anne

Three Years of Living

August sixth 2004…………if I give into it I can recall the intense terror that day brought. The feelings of confusion, fear, anger, sorrow, regrets and guilt for doing this to my family paralyzed me. Only the knowledge that doing nothing was not an option moved me forward. Then the second opinion, and I knew I was in for the fight of my life and determination to slay this beast became my reason for being, and fight I have. Radiation, chemotherapy, endless test, scans and so many biopsies and tumor removals I lost track of the numbers. But no matter what we threw at it the cancer thrived and took root once again necessitating major life changing surgery. Then one day I realized that maybe just maybe we had won the battle. Only time will tell if it will attack again.

August sixth 2007……… Today finds me thriving with the constant rechecks for recurrence a part of my life but no longer the center of it. When looking back I think of a conversation I had with an Ontological Social Worker, sitting in chemotherapy one day, as being a pivotal point in my life. I told her that I was having trouble imagining living life with such uncertainty in it. How do you go forward if you do not know if you are going to be here this time next year or not? And she answered me with a question” How would you live your life differently if you knew?” When it comes down to it none of us really do know what the future will bring. The only thing any of us know with any certainty is that we have today. Maybe I was given a gift in a way for I think most of us never realize how tenuous life really is. I am no more perfect than I was three years ago but I like to think I am wiser. I try very hard to make sure that the words that I would regret not speaking are spoken. I try never to be too busy to see the small joys and miracles of life, the fall day, a good cup of coffee, a new baby or sharing a joke with a friend. I no longer think of doing things someday I do them now. I celebrate birthdays with abandon my age no longer something to morn but to celebrate. I try to forgive others and myself more quickly and love as I want to be loved. I try to think of unlimited possibilities instead of why something is impossible to accomplish. I no longer see sitting with my feet in a stream reading a book as a waste of time. And I try never to forget that tomorrow is a miraculous gift.

 

Through the eyes of James

James was someone I meant with bladder cancer when I was new to all this. He mentored other survivors and one would have never known he knew his days were numbered. He was truely an impressive man and this is what I wrote the day we lost him.

When faced with real adversity we can no longer hide behind the everyday wall most wear, made up of fake smiles, greed, jealousy, discontent and insincere if polite words. Because you have reached a place where the petty everyday things no longer matter and are not worth precious time. What status and honors others give, you know, is just fleeting and not worth the paper or stone they are written on. That true strength is not measured by a persons muscle, power or money but what lies in their actions, heart and mind. That true love is to have loved others above yourself, to put them before your own needs and comfort is to have shown the depth of that love. And that it is only the richness emotionally and spiritually of a life and not the length that can deem it a full one. You know that to have been truly blessed in this life is to have known enduring faith, and that the only lasting sin is to have missed one moment of joy or the chance to bring a smile. You know that the mark of a life well lived is not what we leave behind that can be touched but in the memories and the caring we give and are given. Your only wish would be to teach the world the worth of every day and every minute as the true gift they are. That the only true treasure to be taken from this earth worth having is to have known and given love….and that the only truly poor man is the one that never lived outside of his everyday wall

Why All the Fuss

Over the time I have read many things about how to get well and stay that way. Some where common sense others where way out there. It put me in mind of what my father once said. When I asked him how his doctors appointment went he answered that by the time the doctor told him everything he needed to give up to get well he couldn't remember why he wanted to live. I wrote this for all of us that have ever felt that way. Before you ask no I am not a member of AA and no I don't have Lloyd's number. But if you want a list of my real bad habits just send a self addressed envelope and a large check and I will send them out to you right away.

***********
My doctor took away my will to live on
As he told me what I had to give up I thought of Dr. Kevorkian

So I gave up meat a vegetarian and a vegan I became.

I threw out the coffee, chocolate and caffeine now green tea is just the thing, even though its not the same.

Sugar, fats, nitrates, preservatives, enhancers, fillers, thickeners, and empty calories are a thing in my past. The folks at Whole Food know me by my first name not my last.

My water is the purest sort gathered by vestal virgins at the mother source.

Even though I miss my drinking and smoking buddy Lloyd and his gang, the ones at AA are filling the void as much as they can.

I took up yoga and it is quite the thing, but my chiropractor thinks it may be too much of a good thing.

I doing my best to learn how to meditation and my Dolly Lama thinks I may one day levitate if I can learn not to hesitate.

I wrap up tight to avoid the sun but I am getting tired of signing autographs for Michel Jackson.

My consumption of garlic and onion has become so copious; my children now walk behind me because I am so odorous.

Imagine my disappointment when I got a hernia from heaving around bags of supplements. They are expensive but a second mortgage is a small price to pay if they do all they say.

Last night I woke with a start from a nightmare that almost made my heart stop. All around me at my funeral where my new friends from AA, they where all looking depressed and grey, and then with horror and dismay I heard one of them say you know it is too bad she went to all this fuss only to be run over by a bus.

So you endure.......

I once ran into a lady in chemo, who was just wonderful. She knew she was end stage ovarian cancer and had been fighting ten years. She had seen it all and I had the pleasure of spending six hours with a fascinating lady. Of the twenty times I sat in chemo the day with her stand out the clearest in my mind. One of the things I asked her was what systemic chemo was like. I had that part ahead of me I had just started. “Well” she said “it’s like this….. when you think they are going to kill you they stop” She smiled “When you start feeling good again they start again. That is the idea of it she said. They give you as much as you can take and keep breathing, hoping to kill the cancer. It is a lot like going to war, and I guess that is an apt description, a war is waged in your body. And the good guys fight until they have taken enough casualties and then the general pulls them all back to regroup and fight another day.
And I asked her” How do you stand it?” And again she smiled saying” if you are here you have already made the decision to fight the monster so you endure…………it is as simple as that. You will do what you have to survive.” And she was very right you put your chin up as high as you can get it and go straight forward. Keep in mind that as high as your chin may get that day is the top of the toilet or the mattress. You persevere…….knowing that beating the beast is the reason you did this.

Now we will all do this in our own way. Some of us will whine, even if we never have before. And yes going in and saying fill me up with toxins does have a way of dampening your usual stellar sense of humor at times. Some of us get testy. Some of us get depressed. Sometimes we all cried. Grown men know to be stoic may become child like. Woman thought of as being emotional may become stoic. No two people handle it the same. But handle it we do, no ones way right or wrong. But the only thing that will make it any easier is keeping the end in sight and that is winning the war...so you endure.

 

Thoughts on being a hairless wonder

Cancer takes away so many things. You’re feeling of invincibility. Your faith in the future, life as you know it has changed forever. On the other hand, it brings out the fighter in most of us. You deal with things most people never have to think of. When you are told you may die, you do not crawl away and hide, you face it square on. You tell them ok give me my best shot. You walk in and tell strangers here I am, irradiate me and give me poison. You even learn to see the humor in it. I remember the day I lost my hair as being almost as traumatic as the day I was diagnosed. So why was losing my hair enough to bring me to my knees after all that I had been through? A very complicated question, was it just ego? No, I do not think so, not for me at least.

I had finished my first course of chemo it was low grade to help the radiation do its work. I was told it may or may not fall out this time. I was past the time I thought it would happen and was no longer looking for it. My husband was on travel and I had gotten up and was showering. As I washed my hair, I felt something on my hands. When I squinted through the shampoo bubbles I saw they where covered in hair. As the tears started, I quickly rinsed as the shower drain was clogging. By the time I looked in the mirror the towel and floor where covered also. I looked like a mangy dog and for the first time I saw cancer. I had talked about cancer and studied it but now I saw it. I felt ashamed I did not want anyone to see me. For the first time I wanted to just crawl away and hide. By the time I sat and cried with my hair stylist as she shaved the rest off there was little left but a few tuffs.

I left the shop in my new wig and it felt like something alien was on my head. My girlfriend bless her did not just say it will grow back dear, as most people would in the future. She understood and said coffee hell you need a stiff drink. By the way, I promised to never tell anyone we got tipsy before noon, so keep that to your self-ok? I remember the first time my husband saw me without my wig. Would he still find me attractive? He held me as I cried and laughingly told me he had always had a secret fantasy. He had had it ever since he had seen the Star Trek movie with the bald alien. In addition, in his book it made him a lucky man. He could have a blond a brunette or a red head and his wife would not care. The darling man, he made me laugh through my tears.
In the months, since I have gone through a lot, the wig is now affectionately called the Rat at my house. After systemic chemo I have lost my eyelashes and eyebrows also. My hair has came in and fallen out again. My oldest calls the short time it was coming in my dike phase; by the way, he is out of the will. I have found that when two women see each other without hair a bond is immediately formed. Just as children are drawn together so are we in the sisterhood.

I think the most important lesson I learned was when I went back to exercising after chemo. I had put it off because I knew I could not do it in a wig, much to hot. So I got my nerve up and walked in whipped off the wig threw my keys into it and went to work. It is an all woman group and to say some stopped dead would be an understatement. Then in the days to come something miraculous happened. One by one, they came up and started talking about their experiences and those of family and friends.

I rarely wear the Rat I mean wig anymore except to work. By saying here I am I have nothing to be ashamed of with a smile on my face I have allowed others to face the beast, and see hope. I now know that even if I am bloated by steroids and bald as a cue ball I am still me. So why is a woman losing her hair during chemo so traumatic? You have to face the question, who am I without my looks. The inconvenience of it all and the discomfort of hot flashes in a wig can be a factor. I imagine any woman that has been through it could add her own to the list. However, I think ultimately the biggest reason is it makes you face the beast in the mirror every day.

 

Taming the Beast

The memory of reading my prognosis and normal treatment path the first time will always be with me. I was finally alone the pathology was back and I had what I needed to do some real research. I sat at the computer and typed in Invasive Bladder Cancer into the search engine. I picked the Harvard Medical web director as my first stop. As I read I felt a scream trying to come out but the was no air I couldn’t breath. It was August of 2004 and at 47 I looked into the face of the Beast known as cancer and knew true terror for the first time in my life. After that came a time of numbness and shock I was just living from moment to moment. But always with me was a feeling of dread of expecting the worst. The weeks and days after where filled with finding specialist, tests, planning and decisions. Doing things that had always seemed to be in the future. Living wills, health care proxies, my will and last wishes where taken care of.

Finally on a crisp fall day I stood in front of the Cox Cancer Center in Boston ready to go in and it all hit me. This was the day I would begin radiation and chemotherapy. I couldn’t move there was no going back and I couldn’t go forward. As I stood there I hear a child’s laughter. And a little bald head rushed past me closely followed by Dad. Decked out with his back pack he ran in and pressed the button for the pediatric infusion unit. And the numbness wore off in a flash. I made it to the bathroom stall as the tears came. I to this day do not know if I cried for me or the little bald headed boy. And the words of my father rang in my head. We truly have control of nothing in life but our attitude towards what happens to us. How could I be a coward when this little one could laugh and he hadn’t even begun to live? I walked out of the bathroom knowing I have had a full live and that everyday that was before me was a gift.

One day as I sat in radiation waiting my turn I was talking to a friend I had made. Dave always made me laugh and feel better just by being there. He was my age, good looking, successful, humorous, articulate and intelligent. His sister was with him this day and when he went in for his treatment we talked. I found out he was there for palliative care that they had gotten to his cancer to late and he had maybe a few months. I walked out that day grateful that I had a chance that life was not yet finite for me. Once again I heard my father’s words. We truly have control of nothing in life but our attitude towards what happens to us.

As I was being set up for chemotherapy one day I could hear a lot of laughter coming from behind the curtain from the bed beside mine. And a voice called out “how are you doing I am Judy”. I answered and before long was part of the party. Judy was the ringleader and her daughters where helping her out. When her daughters went to lunch Judy and I talked. Judy asked me how long I had been without hair and I told her and she proceeded to give me advice about handling it when it came back in. She told me not to dye it to soon as she did and it had turned purple from the chemo drugs still in her system. I asked her what she had done. She smiled and said “I went out and bought a purple purse of course”. Judy was end stage and knew it. I walked out that day knowing that to waste one hour of life on regrets and fear was a sin not to be committed. Once again my father’s words echoed in my head. We truly have control of nothing in life but our attitude towards what happens to us.

If the little one or Judy or Dave can face life without finding it hopeless no one ever should. I am sure Dave and Judy who are no longer with us would laugh and tell us that they would willingly live with a small thing such as uncertainty, and be happy for just one more sunset. What we face is not hopelessness but uncertainty. I choose not to let the Beast live my life for me. I choose to live life as the gift it is, with as much joy and laughter as I can. Because I know that my father’s words are very true. We can not control what happens to us in life but we can control how we react to it.

 

Miracles

Once there was a grumpy ungrateful man. He was never happy………..if it was sunny he complained that rain was needed. He never saw the beauty of the night sky because he was too busy cursing the darkness. He didn’t have friends because they would take up to much of his time. He got rid of his dog because he ate too much food. His family was just too much trouble and always needed something.

One day this man became ill, and the doctors told him he had cancer and needed treatment. He complained that the nurses hurt him. He yelled at the Oncologists because the treatment made him ill. He became angry with his cancer support group because he didn’t like what was said all the time. So the man gave up and he sent them all away.

When the man died he found himself in a white room with a young man holding a clip board. “Hello” said the young man “I am with the Miracle Output Committee. We felt that we needed to talk to you, as you have sent back every miracle we have sent you and we wondered why?” “Miracles? I was sent no miracles” yelled the grumpy ungrateful man.” “All I was sent was problems.” Immediately the young man said “Oh no you are very mistaken” he started sorting though his paperwork. “Here is the list of what we sent you and it is a very long one indeed.” Reading on he said. “An intelligent strong mind as well as sight, touch and smell, glorious sunsets, the love of others,the beauty of a spring morning and the joys of nature” and the list went on and on. “And when you got cancer we sent you more miracles” “When I got cancer all I got was trouble and pain, I saw no miracles, I am here aren’t I?” complained the grumpy ungrateful man. The young man looked at him with great pity and said “The cancer we did not send it just was. The miracle we sent you when you got cancer was one of our most wonderful miracles of all, the love of your fellow man.” The young man was shaking his head sadly for he knew the grumpy ungrateful man could not see. “We sent family and friend to comfort and care for you. We sent you other cancer survivors that where willing to share your sorrows and joys. We sent advocacy groups working to make life brighter for all cancer survivors. We sent intelligent, talented people so filled with love for their fellow man that they dedicated their lives to them. Researchers to find a cure, nurses filled with compassion, Oncologists, Surgeons, and Radiologist with staffs to work tirelessly to help you. And through them all we sent you the greatest miracle of all…………hope”

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.