January 4th, 2018 - It wasn't a kidney stone - It was Cancer
We wanted to wait until after the holiday's before we made this announcement because we didn't want to bum anybody out. That word, "CANCER" scares white off of rice. We are coming to terms with it and plan to fight the good fight together. Prayers are appreciated.
Here is what happened. He we go!! It started back in October. October 11th to be exact. My husband informed me that he thought he had a kidney infection. I took him to the doctor.
We informed the nurse that we thought he may have had a bladder, kidney or urinary tract infection. Husband was experiencing some lower back pain and pain across his groin. They gave him the cup to pee in for a sample. As soon as I saw his urine, (I had kidney disease for 3 years) I knew it contained some blood.
As soon as the doctor walked in the room, I informed him that I thought there was blood in Greg's urine. The doctor confirmed it. My husband has been on medication for near 8 years since his stroke. Some of those meds can cause kidney stones so that was the doctors first choice of ailments.
He put him on an antibiotic in case there was an infection and two other meds to help him pass a kidney stone. We went home and waited and waited and waited. I kept telling my husband that if he had a kidney stone he would know. After a few days of meds, he was no longer uncomfortable and his urine had cleared. STILL NO STONE. We had even discussed a name for it, Earl and then Clyde but no stone was delivered.
Since everything seemed to be back to normal we shrugged it off as a kidney infection. We went back to the doctor in early November for Greg's regular 3 month appointment and told the doctor that no stone had passed so it must have been an infection. Then on November 21st, 2017 my husband passed a blood clot into the toilet. I rushed him to the hospital. They tested his blood and said that the blood thinners had made his blood too thin. They told us to stop the blood thinners for two days to get back into safe levels. We had never had trouble with blood thinners before. During that ER visit, they did a cat scan and said that he needed a follow up with a UROLOGIST. The on call doctor said that the cat scan showed a thickening up of part of his bladder wall. I asked her what could cause this and she looked me in the eye and simply said, 'CANCER." I was shocked. I said, "so you are telling us some really bad news right now?" She said, "no, what I am telling you is that he needs to follow up on this and if he doesn't the results could be dire."
We left armed with this shocking news and I called his GP the next day. Everyone was closing early for Thanksgiving weekend. I left a message at the doctors office. His doctor (we call him Timmy as he has been Greg's doctor for 7 years since we moved to Tennessee) called us that same afternoon. We told him what was going on. He called daily through the holiday weekend to check on him and help keep me calm. He set up an appointment for my husband to see a local UROLOGIST on November 29th, 2017.
It was a sunny day. I will never forget how sunny a day it was. We entered his waiting room. It looked like time had stood still in circa 1975. Quite frankly that made me a bit uncomfortable. He had tons of files on the walls in the reception room so he seemed to be the only horse and pony show in town. His nurse was nice enough but he had no bedside manner. We were very soon to discover that this man was probably in need of a vacation.
He was to perform a procedure on my husband. I want to be honest with people in this blog so if you are bothered by body parts or medical terms, it is probably a good time to stop reading. This procedure is called a cystoscopy. They literally take a tiny camera up through the penis and take a look at your prostate and the inside of your bladder. When he was done with that, he came back into the room where I was waiting and where my husband had returned and bluntly told us that my husband has cancer. We were stunned. I said, "Don't we need a biopsy before you can make that statement?" He responded with a southern drawl, "I have been doing this for 30 years. I know it is cancer."
He then said he would get him schedule for surgery and ushered us out of the office. We both felt like we had just been run over by a truck. This doctor might be used to telling people news that would change their lives forever but we sure weren't used to getting that kind of scary life altering news. We spoke to Timmy and told him of our terrible experience. We said we wanted a 2nd opinion. Timmy agreed. I call the insurance company Blue Cross Blue Shield of Tennessee to make sure they would help for a 2nd opinion. I told them why we needed a second opinion. Unbeknownst to me, the insurance company filed a grievance against the doctor. YOU GO BCBST!! I remember that sunny day. Both me and my husband remarked that it should be raining, pouring and stormy on a day you get such news. It felt as though the weather was mocking us. Who gets a cancer diagnosis on a sun shiny day? It just felt so out of place.
We went in for the 2nd opinion in Nashville in mid December. The Urologist ordered a cat scan with contrast, something that first cat scan didn't have. Another $200.00 co-pay later for 2nd cat scan but same day so we didn't have to drive back into the city, the cat scan was done. The 2nd opinion doctor said he was checking to see if the cancer had spread. He did inform us that you can tell if it is cancer in the bladder by viewing it through the scope. He agreed that doctor #1 should have been more compassionate. He also told us that what you can't tell is what type of cancer, what stage you are in and how to treat it until you remove the tumor and have it biopsied.
Waiting those 24 hours to find out if the cancer had spread was awful. To be perfectly honest, until that doctor received the radiology report, we still were in denial about it even being cancer. Oh, another thing I should mention is that the bleeding had all but stopped but as soon as we got to the hospital in Nashville where the specialist has his practice, the bleeding started in again profusely. I asked the doctor if stress can bring it on and he said it could. Anyhow, the doctors assistant called us the day after the 2nd cat scan to tell us that the cancer was contained in the bladder (HAS NO SPREAD) and that she was going to obtain cardiac clearance from my husbands cardiologist and they would schedule his surgery/procedure.
What they do is they go in the bladder and they remove the tumor. Then they put a liquid chemo into the bladder and make you lay there rolling you over and from side to side like a rotisserie chicken to totally coat the bladder with chemo. Then they use a catheter to get the chemo out. He will then have to be rechecked every three months.
Our first hurdle is to get through 5 days of being off blood thinners without having a stroke or a heart attack. My husband just celebrated his 8th year post stroke. He has been on blood thinners all these 8 years. We are going to need some pretty major prayers during those 5 days. If we can get to the surgery/procedure without incident, we can live with the rest. Another thing to note is that for most people, they do this out patient. They are going to try to do it out patient for my husband as well unless his cardiologist wants him in patient and he might. Depending on the time of day, like if they want early morning, we may have to drive into Nashville the day before and stay in a hotel. We do live an hour and a half outside the city but we are not taking chances. At times like this, you must get the best and most up to date medical treatment you can find. We will keep you updated via this blog as it is just easier than talking about it all the time and over and over again. It is so draining and we must reserve all our energy for the fight. By writing this blog, we also are trying to bring awareness regarding bladder cancer.
We are told that bladder cancer is pretty common but you never really hear anybody talking about it, the signs, symptoms or what comes next. If we can help one person spot the signs early, it would be a wonderful thing.
Another thing I want to note is that we have been told by several doctors that the blood thinners may have caused the bleeding to alert us to the cancer. If it hadn't been for the blood thinners, we may not have found out about this until it was advanced. For now we are keeping our fingers crossed that it is an early stage and that the prognosis is a good one. Until next time.....
We wanted to wait until after the holiday's before we made this announcement because we didn't want to bum anybody out. That word, "CANCER" scares white off of rice. We are coming to terms with it and plan to fight the good fight together. Prayers are appreciated.
Here is what happened. He we go!! It started back in October. October 11th to be exact. My husband informed me that he thought he had a kidney infection. I took him to the doctor.
We informed the nurse that we thought he may have had a bladder, kidney or urinary tract infection. Husband was experiencing some lower back pain and pain across his groin. They gave him the cup to pee in for a sample. As soon as I saw his urine, (I had kidney disease for 3 years) I knew it contained some blood.
As soon as the doctor walked in the room, I informed him that I thought there was blood in Greg's urine. The doctor confirmed it. My husband has been on medication for near 8 years since his stroke. Some of those meds can cause kidney stones so that was the doctors first choice of ailments.
He put him on an antibiotic in case there was an infection and two other meds to help him pass a kidney stone. We went home and waited and waited and waited. I kept telling my husband that if he had a kidney stone he would know. After a few days of meds, he was no longer uncomfortable and his urine had cleared. STILL NO STONE. We had even discussed a name for it, Earl and then Clyde but no stone was delivered.
Since everything seemed to be back to normal we shrugged it off as a kidney infection. We went back to the doctor in early November for Greg's regular 3 month appointment and told the doctor that no stone had passed so it must have been an infection. Then on November 21st, 2017 my husband passed a blood clot into the toilet. I rushed him to the hospital. They tested his blood and said that the blood thinners had made his blood too thin. They told us to stop the blood thinners for two days to get back into safe levels. We had never had trouble with blood thinners before. During that ER visit, they did a cat scan and said that he needed a follow up with a UROLOGIST. The on call doctor said that the cat scan showed a thickening up of part of his bladder wall. I asked her what could cause this and she looked me in the eye and simply said, 'CANCER." I was shocked. I said, "so you are telling us some really bad news right now?" She said, "no, what I am telling you is that he needs to follow up on this and if he doesn't the results could be dire."
We left armed with this shocking news and I called his GP the next day. Everyone was closing early for Thanksgiving weekend. I left a message at the doctors office. His doctor (we call him Timmy as he has been Greg's doctor for 7 years since we moved to Tennessee) called us that same afternoon. We told him what was going on. He called daily through the holiday weekend to check on him and help keep me calm. He set up an appointment for my husband to see a local UROLOGIST on November 29th, 2017.
It was a sunny day. I will never forget how sunny a day it was. We entered his waiting room. It looked like time had stood still in circa 1975. Quite frankly that made me a bit uncomfortable. He had tons of files on the walls in the reception room so he seemed to be the only horse and pony show in town. His nurse was nice enough but he had no bedside manner. We were very soon to discover that this man was probably in need of a vacation.
He was to perform a procedure on my husband. I want to be honest with people in this blog so if you are bothered by body parts or medical terms, it is probably a good time to stop reading. This procedure is called a cystoscopy. They literally take a tiny camera up through the penis and take a look at your prostate and the inside of your bladder. When he was done with that, he came back into the room where I was waiting and where my husband had returned and bluntly told us that my husband has cancer. We were stunned. I said, "Don't we need a biopsy before you can make that statement?" He responded with a southern drawl, "I have been doing this for 30 years. I know it is cancer."
He then said he would get him schedule for surgery and ushered us out of the office. We both felt like we had just been run over by a truck. This doctor might be used to telling people news that would change their lives forever but we sure weren't used to getting that kind of scary life altering news. We spoke to Timmy and told him of our terrible experience. We said we wanted a 2nd opinion. Timmy agreed. I call the insurance company Blue Cross Blue Shield of Tennessee to make sure they would help for a 2nd opinion. I told them why we needed a second opinion. Unbeknownst to me, the insurance company filed a grievance against the doctor. YOU GO BCBST!! I remember that sunny day. Both me and my husband remarked that it should be raining, pouring and stormy on a day you get such news. It felt as though the weather was mocking us. Who gets a cancer diagnosis on a sun shiny day? It just felt so out of place.
We went in for the 2nd opinion in Nashville in mid December. The Urologist ordered a cat scan with contrast, something that first cat scan didn't have. Another $200.00 co-pay later for 2nd cat scan but same day so we didn't have to drive back into the city, the cat scan was done. The 2nd opinion doctor said he was checking to see if the cancer had spread. He did inform us that you can tell if it is cancer in the bladder by viewing it through the scope. He agreed that doctor #1 should have been more compassionate. He also told us that what you can't tell is what type of cancer, what stage you are in and how to treat it until you remove the tumor and have it biopsied.
Waiting those 24 hours to find out if the cancer had spread was awful. To be perfectly honest, until that doctor received the radiology report, we still were in denial about it even being cancer. Oh, another thing I should mention is that the bleeding had all but stopped but as soon as we got to the hospital in Nashville where the specialist has his practice, the bleeding started in again profusely. I asked the doctor if stress can bring it on and he said it could. Anyhow, the doctors assistant called us the day after the 2nd cat scan to tell us that the cancer was contained in the bladder (HAS NO SPREAD) and that she was going to obtain cardiac clearance from my husbands cardiologist and they would schedule his surgery/procedure.
What they do is they go in the bladder and they remove the tumor. Then they put a liquid chemo into the bladder and make you lay there rolling you over and from side to side like a rotisserie chicken to totally coat the bladder with chemo. Then they use a catheter to get the chemo out. He will then have to be rechecked every three months.
Our first hurdle is to get through 5 days of being off blood thinners without having a stroke or a heart attack. My husband just celebrated his 8th year post stroke. He has been on blood thinners all these 8 years. We are going to need some pretty major prayers during those 5 days. If we can get to the surgery/procedure without incident, we can live with the rest. Another thing to note is that for most people, they do this out patient. They are going to try to do it out patient for my husband as well unless his cardiologist wants him in patient and he might. Depending on the time of day, like if they want early morning, we may have to drive into Nashville the day before and stay in a hotel. We do live an hour and a half outside the city but we are not taking chances. At times like this, you must get the best and most up to date medical treatment you can find. We will keep you updated via this blog as it is just easier than talking about it all the time and over and over again. It is so draining and we must reserve all our energy for the fight. By writing this blog, we also are trying to bring awareness regarding bladder cancer.
We are told that bladder cancer is pretty common but you never really hear anybody talking about it, the signs, symptoms or what comes next. If we can help one person spot the signs early, it would be a wonderful thing.
Another thing I want to note is that we have been told by several doctors that the blood thinners may have caused the bleeding to alert us to the cancer. If it hadn't been for the blood thinners, we may not have found out about this until it was advanced. For now we are keeping our fingers crossed that it is an early stage and that the prognosis is a good one. Until next time.....
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