Health update
By now, for the few of you who remember me, I ought to update you on my health status. In the words of NASA, my treatment and recovery have been "nominal".
I was originally diagnosed with bladder cancer last November at the begining of the month. My urologist was concerned enough with what he saw on the CAT scan (tumors almost filling the interior of my bladder) that he said he wouldn't bother doing a biops himself. Instead, he referred me directly to Dr. Kamal Pohar ot Ohio State University' Jaes Cancer Research Hospital. I met with Dr. Pohar and his team in mid-November. What they didn't tell me is that the size of the tumors led them to believe they must have metastasized ouside of the bladder, meaning I would be in Stage IV, with about a 15% chance of surviving five years. What they DID tell me is that if I had to have cancer, it might as well be bladder cancer, because they knew how to deal with it.
Two things never asked by doctors: "What do you prefer to be called?" and "How much education do you have?" I go by my middle name, but all records lst my first name instead. As for thesecond non-asked question, during my initial visit, I spoke with the physician's assistant, a resident and Dr. Pohar, all trying to explain, in the simplest possible language why they wante to keep specimens of my tumors. I replied that I had a Ph. D. in a research science and kew the importance of sampling, and of course, they could keep whatever samples they needed.
I had a biopsy on December 7th, and emerged from it with a Foley catheter, as on of the tumors was threatening to block off my urethra. For the next month, I was largely bedridden, wth a LOT of internal hemorraging. It seems that there was so little rom in my bladder that the inflatable head of the Foley kept bumping into the bladder walls and the tumors,ausing injuries. I largely lost Christmas and New Year's, no outside trips. The catheter got replaced in early January, after cheo had startedshrinking the tumor, and I quit leaking blood, and was able to get out of he house occasionally. No work - my company kept me "on the books" until early February when I went on insurance-provided disability.
Current bldder cancer protocol is to treat muscle-invasive bladder cancer with chemotherapy first, and then with surgery to remove the bladder. My surgeon referred me to a local doctor with an excellent reputation to administer chemo. This saved me about a dozen trips to Columbus, Ohio. I went through four 21-day cycles with Gemzar and Cisplaten, starting in late December and extending into early March. I tolerated chemo relatively well, no nausea, and only some hair ad beard loss. I was pretty wiped out the day of the chemo treatment, but usually recovered late in the day. My daughter mari4212 got home one Friday (a chemo day) and saw me grooving to a new Bruce Springsteen tune, and said I must be getting better. I had one complication, a blood clot high in my right leg.
When chemo was finished, the tumors had shrunk to such an extent that my urologist could remove the Foley catheter, ad I cold more-or-less function normally for about six weeks. I had that delay to help flush out the chemo drugs completely from my system prior to surgery.
Surgery was on May 2nd, and lasted about 12 hours. During the surgery, my bladder, prostate and associated plumbing were removed, along with a bunch of nearby lymph nodes. I had already agreed to participate in a research study comparing standard surgery to an enhanced lymph node removal. It is'nt double-blind but it is randomized, and my doctor called in to NIH in Washington DC during surgery. I got enhanced treatment, and a total of 60 lymph nodes got removed. They then paused surgery again to wait for the emergency-rush pathology report. The uretral and urethral cut ends of the bladder came back "clean" and my surgeon was able to construct a neobladder out of a foot of my small intestine. I woke up late that night to the news that surgery had been succssfull. I also had nine tubes leading into or out of me, including two IVs and a naso-gastric tube. I got fed by IVs for almost a week until the stitched-together ends of my intestine healed, and several other tubes and drains were removed as well. I was released from the hospital after nine days. I had one relapse due to a fungal infection of my urinary tract, with four more days in the hospital.
Three weeks fter my surgery, I was back at OSU, where they tested to see if the stitches holding together my neobladder had healed. They pumped me full of X-ray fluorescent dye, and the X-rays showed it had held. Now I had to train the new bladder how to e a bladder. When it was made, it had a capacity of about 70 ml, or a little over two fluid ounces - about what I could generate in an hour. I needed to stretch out the bladder to hold more, by waiting as long as possible to "go" and using the internal pressure to gradually stretch out he new bladder. Each time I "went" I had to measure the volume, and then catheterize myself to make sure I had voided everything. I also had to flush myself four times daily to get out the mucus that my intestine/bladder was stillmaking. Over time, I got to skip the constant catheterization, and even the flushings. Over about eight weeks, my capacity finally grew to about a pint, four hours worth of time. Since this was the design capacity of the nw bladder, I got released from medical monitoring. A final visit to OSU, and checkups by my regular doctor and an occupational medical specialist, and I went back to work about three weeks ago.
The final pathology report showed no evidence of any spread of caner outside of my bladder, and I was "downgraded" to a Stage II, with a greatly increased chance for long-term survival. I'll be going back for screenings and CAT scans quarterly for a year and annually afterwards for at least five years and probably longer. I won't be officially "cured" for five years, but I have permission to start living that way now. Along the way, I've lost almost 60 pounds, and my blood sugar has returned to normal levels. The hair I lost has come back in, brown instead of gray. I still need some additional endurance, but I'm probably in better shape now than I have been in years.
I couldn't have done it without the support of my company, my work, and especially my family. I owe them all a BIG thank you.
I was originally diagnosed with bladder cancer last November at the begining of the month. My urologist was concerned enough with what he saw on the CAT scan (tumors almost filling the interior of my bladder) that he said he wouldn't bother doing a biops himself. Instead, he referred me directly to Dr. Kamal Pohar ot Ohio State University' Jaes Cancer Research Hospital. I met with Dr. Pohar and his team in mid-November. What they didn't tell me is that the size of the tumors led them to believe they must have metastasized ouside of the bladder, meaning I would be in Stage IV, with about a 15% chance of surviving five years. What they DID tell me is that if I had to have cancer, it might as well be bladder cancer, because they knew how to deal with it.
Two things never asked by doctors: "What do you prefer to be called?" and "How much education do you have?" I go by my middle name, but all records lst my first name instead. As for thesecond non-asked question, during my initial visit, I spoke with the physician's assistant, a resident and Dr. Pohar, all trying to explain, in the simplest possible language why they wante to keep specimens of my tumors. I replied that I had a Ph. D. in a research science and kew the importance of sampling, and of course, they could keep whatever samples they needed.
I had a biopsy on December 7th, and emerged from it with a Foley catheter, as on of the tumors was threatening to block off my urethra. For the next month, I was largely bedridden, wth a LOT of internal hemorraging. It seems that there was so little rom in my bladder that the inflatable head of the Foley kept bumping into the bladder walls and the tumors,ausing injuries. I largely lost Christmas and New Year's, no outside trips. The catheter got replaced in early January, after cheo had startedshrinking the tumor, and I quit leaking blood, and was able to get out of he house occasionally. No work - my company kept me "on the books" until early February when I went on insurance-provided disability.
Current bldder cancer protocol is to treat muscle-invasive bladder cancer with chemotherapy first, and then with surgery to remove the bladder. My surgeon referred me to a local doctor with an excellent reputation to administer chemo. This saved me about a dozen trips to Columbus, Ohio. I went through four 21-day cycles with Gemzar and Cisplaten, starting in late December and extending into early March. I tolerated chemo relatively well, no nausea, and only some hair ad beard loss. I was pretty wiped out the day of the chemo treatment, but usually recovered late in the day. My daughter mari4212 got home one Friday (a chemo day) and saw me grooving to a new Bruce Springsteen tune, and said I must be getting better. I had one complication, a blood clot high in my right leg.
When chemo was finished, the tumors had shrunk to such an extent that my urologist could remove the Foley catheter, ad I cold more-or-less function normally for about six weeks. I had that delay to help flush out the chemo drugs completely from my system prior to surgery.
Surgery was on May 2nd, and lasted about 12 hours. During the surgery, my bladder, prostate and associated plumbing were removed, along with a bunch of nearby lymph nodes. I had already agreed to participate in a research study comparing standard surgery to an enhanced lymph node removal. It is'nt double-blind but it is randomized, and my doctor called in to NIH in Washington DC during surgery. I got enhanced treatment, and a total of 60 lymph nodes got removed. They then paused surgery again to wait for the emergency-rush pathology report. The uretral and urethral cut ends of the bladder came back "clean" and my surgeon was able to construct a neobladder out of a foot of my small intestine. I woke up late that night to the news that surgery had been succssfull. I also had nine tubes leading into or out of me, including two IVs and a naso-gastric tube. I got fed by IVs for almost a week until the stitched-together ends of my intestine healed, and several other tubes and drains were removed as well. I was released from the hospital after nine days. I had one relapse due to a fungal infection of my urinary tract, with four more days in the hospital.
Three weeks fter my surgery, I was back at OSU, where they tested to see if the stitches holding together my neobladder had healed. They pumped me full of X-ray fluorescent dye, and the X-rays showed it had held. Now I had to train the new bladder how to e a bladder. When it was made, it had a capacity of about 70 ml, or a little over two fluid ounces - about what I could generate in an hour. I needed to stretch out the bladder to hold more, by waiting as long as possible to "go" and using the internal pressure to gradually stretch out he new bladder. Each time I "went" I had to measure the volume, and then catheterize myself to make sure I had voided everything. I also had to flush myself four times daily to get out the mucus that my intestine/bladder was stillmaking. Over time, I got to skip the constant catheterization, and even the flushings. Over about eight weeks, my capacity finally grew to about a pint, four hours worth of time. Since this was the design capacity of the nw bladder, I got released from medical monitoring. A final visit to OSU, and checkups by my regular doctor and an occupational medical specialist, and I went back to work about three weeks ago.
The final pathology report showed no evidence of any spread of caner outside of my bladder, and I was "downgraded" to a Stage II, with a greatly increased chance for long-term survival. I'll be going back for screenings and CAT scans quarterly for a year and annually afterwards for at least five years and probably longer. I won't be officially "cured" for five years, but I have permission to start living that way now. Along the way, I've lost almost 60 pounds, and my blood sugar has returned to normal levels. The hair I lost has come back in, brown instead of gray. I still need some additional endurance, but I'm probably in better shape now than I have been in years.
I couldn't have done it without the support of my company, my work, and especially my family. I owe them all a BIG thank you.