Ok, so I didn’t get out of jail ..... It is 4:00 PM Fri. And I hope to get out tomorrow, again tomorrow. The infectious disease people have finally made a decision, and are trying to arrange a self administered IV of something referred to as Vinco. It is a heavy duty antibiotic..... 2 - 6 weeks depending on test to be taken in a couple of weeks. The big question, has the infection reached my heart..... fairly serious stuff I am thinking.
Apparently my infection (s) are somewhat rare and/or hard to eradicate. Just lucky, I guess.
It is hard to believe, but the folks here have made my trip possible. It involves deliveries of meds and an IV pump to me in Valencia tomorrow, and then meds again in Clearfield, and lab work to be done in Hershey Pa. This has all hit the fan within the last 3-4 hours, and at one point, I had 2 calls on 2 different phones, blood being drawn from my left arm, and a nurse working on my IV line in my right arm...... kind of like a SNL skit.
My chemo has just been started, and will be finished this evening. Tomorrow morning I will have a “pick” line (deep vein IV that will last the 6 weeks if necessary) installed, and then be out of here.
I just found out that my Medicare part D prescription plan will not pay any of the cost of the “home meds” that I need..... just an extra $700..... I’m not sure why I am paying a monthly fee, if they pay nothing.
Karen has been an angel during this ordeal, I can’t say enough good things. Thanks also to Terri Lynn, who has been handling my Frazier Park business. It is easy to get caught up in the “bad” of my situation, but in spite of the nasty parts, I am thankful for the people that have stepped up to help me
Dinner will be coming soon..... lobster tail with drawn butter and a baked potato..... USC does a great job.
Friday, February 28, 2014
Wednesday, February 26, 2014
Complication
So, I am to get out of the hospital tomorrow..... probably. They want to get another cat scan of my kidneys. I do not really understand why.... it has something to do with “blocked” urine, that may have been causative regarding my blood infection.
I had my first chemo last Tuesday, and started to run a fever later that week. I figured that feeling lousy was just part of the “chemo” routine, and I would feel better in a few days. Years ago, my friend Carl probably saved my life when he convinced me to seek help.... turned out that I was very close to a diabetic coma.....
This time it was Karen. On Friday, she insisted that I get it checked out, phone call to USC..... urgent care.... then ER..... then transfer from Henry Mayo to USC Norris by ambulance. Much ado about nothing I thought. 5 days, dozens of blood tests, ultrasounds of my heart, x-rays, endless body fluid samples, and a never ending lineup of antibiotics later, I am deemed well enough to leave. Not for sure, but probably.
The plan is for 2 weeks of IV antibiotics administered at home... not my home, but Karens home. It is possible that I can get a “self administered” IV arraignment set up, which would allow me to make my planned trip to PA. Next week.
My chemo that was scheduled for this past Tues. Was rescheduled for this Friday. Assuming that my blood passes all of the tests Fri. Morning, then a 5 hr. infusion of Gemzar. I have noticed that in spite of the general awfulness of a chemo infusion, and the aftermath, I really have fought to get the dam thing. Guess that I am desperate to kill the cancer.
I had the good fortune to attend some high school football games this past fall, and noticed that the entire event had the unmistakable aura of “youthful exuberance”. Go to a rodeo, can’t miss the heavy layers of testosterone that blanket the event. You get the picture, places/events have a feeling..... graduations are oozing parental pride, etc.
I am not sure just what the opposite of “uplifting” is, but that is what you get when you walk into the chemo ward. Doom and gloom is everywhere, and seems to seep into every person and thing there. Really quite disturbing, and difficult to ignore.
It seems that this is just another of the battles that needs to be won in the ongoing war on cancer.
I had my first chemo last Tuesday, and started to run a fever later that week. I figured that feeling lousy was just part of the “chemo” routine, and I would feel better in a few days. Years ago, my friend Carl probably saved my life when he convinced me to seek help.... turned out that I was very close to a diabetic coma.....
This time it was Karen. On Friday, she insisted that I get it checked out, phone call to USC..... urgent care.... then ER..... then transfer from Henry Mayo to USC Norris by ambulance. Much ado about nothing I thought. 5 days, dozens of blood tests, ultrasounds of my heart, x-rays, endless body fluid samples, and a never ending lineup of antibiotics later, I am deemed well enough to leave. Not for sure, but probably.
The plan is for 2 weeks of IV antibiotics administered at home... not my home, but Karens home. It is possible that I can get a “self administered” IV arraignment set up, which would allow me to make my planned trip to PA. Next week.
My chemo that was scheduled for this past Tues. Was rescheduled for this Friday. Assuming that my blood passes all of the tests Fri. Morning, then a 5 hr. infusion of Gemzar. I have noticed that in spite of the general awfulness of a chemo infusion, and the aftermath, I really have fought to get the dam thing. Guess that I am desperate to kill the cancer.
I had the good fortune to attend some high school football games this past fall, and noticed that the entire event had the unmistakable aura of “youthful exuberance”. Go to a rodeo, can’t miss the heavy layers of testosterone that blanket the event. You get the picture, places/events have a feeling..... graduations are oozing parental pride, etc.
I am not sure just what the opposite of “uplifting” is, but that is what you get when you walk into the chemo ward. Doom and gloom is everywhere, and seems to seep into every person and thing there. Really quite disturbing, and difficult to ignore.
It seems that this is just another of the battles that needs to be won in the ongoing war on cancer.
Wednesday, February 19, 2014
First Chemo
Chemo 101..... find out who to call regarding your chemo appointment. Major SNAFU regarding my appointment to kickoff this phase of John Vs cancer.
I waited for a call on Monday to confirm my appointment, which is standard protocol at USC Norris Hospital..... and waited..... and waited. Those of you who know me probably realize that patience is not one of my virtues. So, I started calling..... nothing but voice mail, “leave a message and we will return your call ASAP”...... more waiting...... more calls..... no response.
I finally managed to find a person at a general number for USC Norris. I was repeatedly transferred to the same voice mails that had already failed me. Once again, those of you that know me, realize that I am unable to let these things go. So remaining true to myself, I continued to call the operator, and verbally battle to speak to a person.... any person.... At this point, the operator realized that transferring me to another voice mail would not get him out of the loop, started transferring me to real people. Picture me doing a happy dance.
Found out that Monday was indeed a holiday, presidents day, and that no one was in the department (oncology and scheduling) that I was calling. Mystery of no return calls solved..... Also found out that there was indeed a person at the “Day Hospital”, which is the place where chemo happens. It was then learned that I was most definitely not on the schedule for chemo on Tues. Only option left, call on Tues. Morning.
Tues morning, repeat of Monday process..... finally found out that chemo orders had been made that very morning, and someone should have called me. It is 10 am, I arrive at 11:10 am, for a procedure that takes over 11 hours.
The process itself is anticlimactic. Comfortable bed, TV, bathroom in room, sandwich for lunch, chicken for dinner, and many, many, many bags of IV fluid. I was surprised to learn how many drugs were involved, and how precise the timing needed to be. I left at 10:30 pm.
While receiving my drugs, I spoke with all of the people that I could not reach on Monday. I discovered that I must be mellowing in my old age, or possibly getting a bit more wisdom. I had not come across as angry or rude, but anxious and frustrated..... apparently judged as reasonable by the recipients. My messages motivated the doctor and the scheduler to pounce on my problem, and take care of business. My “message decorum” may also have been influenced by the respect that I have for the doctors and the support staff at USC. They truly are a first class operation from top to bottom. Great facility, great staff, great attitude, and some of the best medical talent in the world. I am amazed that this quality of care is available to someone like me.
I also realized that nobody in the health care business cares as much about me as me...... and that is very reasonable.
Wed. morning awoke with no appetite, and a bit of nausea..... will try some “fix it” drugs. Comments are always welcome
I waited for a call on Monday to confirm my appointment, which is standard protocol at USC Norris Hospital..... and waited..... and waited. Those of you who know me probably realize that patience is not one of my virtues. So, I started calling..... nothing but voice mail, “leave a message and we will return your call ASAP”...... more waiting...... more calls..... no response.
I finally managed to find a person at a general number for USC Norris. I was repeatedly transferred to the same voice mails that had already failed me. Once again, those of you that know me, realize that I am unable to let these things go. So remaining true to myself, I continued to call the operator, and verbally battle to speak to a person.... any person.... At this point, the operator realized that transferring me to another voice mail would not get him out of the loop, started transferring me to real people. Picture me doing a happy dance.
Found out that Monday was indeed a holiday, presidents day, and that no one was in the department (oncology and scheduling) that I was calling. Mystery of no return calls solved..... Also found out that there was indeed a person at the “Day Hospital”, which is the place where chemo happens. It was then learned that I was most definitely not on the schedule for chemo on Tues. Only option left, call on Tues. Morning.
Tues morning, repeat of Monday process..... finally found out that chemo orders had been made that very morning, and someone should have called me. It is 10 am, I arrive at 11:10 am, for a procedure that takes over 11 hours.
The process itself is anticlimactic. Comfortable bed, TV, bathroom in room, sandwich for lunch, chicken for dinner, and many, many, many bags of IV fluid. I was surprised to learn how many drugs were involved, and how precise the timing needed to be. I left at 10:30 pm.
While receiving my drugs, I spoke with all of the people that I could not reach on Monday. I discovered that I must be mellowing in my old age, or possibly getting a bit more wisdom. I had not come across as angry or rude, but anxious and frustrated..... apparently judged as reasonable by the recipients. My messages motivated the doctor and the scheduler to pounce on my problem, and take care of business. My “message decorum” may also have been influenced by the respect that I have for the doctors and the support staff at USC. They truly are a first class operation from top to bottom. Great facility, great staff, great attitude, and some of the best medical talent in the world. I am amazed that this quality of care is available to someone like me.
I also realized that nobody in the health care business cares as much about me as me...... and that is very reasonable.
Wed. morning awoke with no appetite, and a bit of nausea..... will try some “fix it” drugs. Comments are always welcome
Saturday, February 15, 2014
The chemo plan is in place
OK, so the meeting with the oncologist is in the book. Yes indeed, I have been scanned, poked, prodded, and inspected in all possible ways, and in the words of Arlo Gutherie, they have let no part of me untouched. The scan is to check for cancer in distant parts of my body, and to have something to compare pre and post chemo.
My last post contained a big mistake..... This round of chemo is not a “last chance weapon deployment”. The Doc. Said that future chemo, if necessary, was possible during dialysis. It is good to know that there are options available down the road.
I have been deemed to be healthy enough to receive chemo..... I never realized that was in question, but in any event, I start chemo on Tues. I will have a 9 hr. day on Tues. the 18th, 3 hrs of infusion, and 6 hrs of flushing. This first day will be both Gemzar and Cisplatin. On Tues the 25th, I will be there about 5 hrs, and receive only Gemzar. The third week, is a week off..... woo hoo...... This sequence repeats 4 times.
There is no way to stage my cancer until after the kidneys are removed, thus no way to predict my survivability. Best case 89% chance to survive 5 years, worst case, 16% chance to make 5 years. It all depends on if the cancer escapes the kidneys, and where it may set up camp.
Anyway, my best chance is to have a good response to the chemo and then have the kidneys removed about 1 month later. If cancer shows up elsewhere, they will not want to remove my kidneys, but leave them in place as long as they continue to function.
I still plan to make my trip to Pa, but I really have no idea what to expect..... sick as a dog, or not too bad. Right now, I am thinking if I am not in the hospital, I will be on the plane.
My last post contained a big mistake..... This round of chemo is not a “last chance weapon deployment”. The Doc. Said that future chemo, if necessary, was possible during dialysis. It is good to know that there are options available down the road.
I have been deemed to be healthy enough to receive chemo..... I never realized that was in question, but in any event, I start chemo on Tues. I will have a 9 hr. day on Tues. the 18th, 3 hrs of infusion, and 6 hrs of flushing. This first day will be both Gemzar and Cisplatin. On Tues the 25th, I will be there about 5 hrs, and receive only Gemzar. The third week, is a week off..... woo hoo...... This sequence repeats 4 times.
There is no way to stage my cancer until after the kidneys are removed, thus no way to predict my survivability. Best case 89% chance to survive 5 years, worst case, 16% chance to make 5 years. It all depends on if the cancer escapes the kidneys, and where it may set up camp.
Anyway, my best chance is to have a good response to the chemo and then have the kidneys removed about 1 month later. If cancer shows up elsewhere, they will not want to remove my kidneys, but leave them in place as long as they continue to function.
I still plan to make my trip to Pa, but I really have no idea what to expect..... sick as a dog, or not too bad. Right now, I am thinking if I am not in the hospital, I will be on the plane.
Tuesday, February 11, 2014
A small success
Success..... well a small win. I managed to get my oncologist appointment moved up from the 21st to the 14th. This could make a big difference in the effectiveness of the treatment. Really no way to tell, but I am thinking that sooner is better than later.
My success in moving my biopsy up a week, and moving this appointment up a week make me think that I could start a new career as a diplomat, a lobbyist, or at the very least a patient advocate.... I am excited by the possibilities.
Gemzar/Cisplatin, the drugs that I am likely to receive are generally given in a “2 weeks on, 1 week off” regime. It is possible that I can fit in my annual trip to Pa. Into the “week off” part of this protocol. I guess that “traveling” is a question (one of many) for the Doc.
My theory is that even when you know that you are going to get your ass kicked, it is best to get on with it..... waiting in fear is debilitating and counter productive..... So, full speed ahead.
My success in moving my biopsy up a week, and moving this appointment up a week make me think that I could start a new career as a diplomat, a lobbyist, or at the very least a patient advocate.... I am excited by the possibilities.
Gemzar/Cisplatin, the drugs that I am likely to receive are generally given in a “2 weeks on, 1 week off” regime. It is possible that I can fit in my annual trip to Pa. Into the “week off” part of this protocol. I guess that “traveling” is a question (one of many) for the Doc.
My theory is that even when you know that you are going to get your ass kicked, it is best to get on with it..... waiting in fear is debilitating and counter productive..... So, full speed ahead.
Sunday, February 9, 2014
On to treatment
So, my path report is in, and I have seen ½ of it. I am trying to get the rest of it, but things medical seem to move very slowly. One might think that with all of the “life and death” stuff going on there would be a sense of urgency, but that does not seem to be the case.
Anyway, according to the Doc., the report merely confirms what he already knew..... the same cancer that was in my bladder, in both kidneys.
The plan is to attack the cancer with drugs, and then remove both kidneys. Yup you heard right, REMOVE BOTH KIDNEYS!!!!! First my bladder, then my belly button, and now my kidneys. Where will it end?
The chemo is to go after any cancer cells that may be wandering around my body looking for a place to settle in and raise a family. After the kidneys come out, no more chemo possible, so it is kind of a “last chance” weapon deployment. So, after chemo, and after we deport the kidneys for allowing this nasty disease to infiltrate my personal borders, we are out of ammo. If my cancer survives these measures, then it wins.
If I win this round, then I am on to “life on dialysis”. Pretty grim, but still “life”. If I survive 2 years without the return of cancer, then possibly a transplant.
I have an appointment with the oncologist on the 21st. I am trying to move this up, but am not having much luck. All of the information exists, all of the tests are done..... the only thing necessary to begin treatment is for the doc to prescribe treatment. It seems a dangerous and unnecessary waste of time to wait 2 weeks. I mean, we just punched holes into my kidneys, and disturbed the cancer..... certainly enough to make it angry and want to find new digs.
In any event, the path is clear, just waiting for the system.
Anyway, according to the Doc., the report merely confirms what he already knew..... the same cancer that was in my bladder, in both kidneys.
The plan is to attack the cancer with drugs, and then remove both kidneys. Yup you heard right, REMOVE BOTH KIDNEYS!!!!! First my bladder, then my belly button, and now my kidneys. Where will it end?
The chemo is to go after any cancer cells that may be wandering around my body looking for a place to settle in and raise a family. After the kidneys come out, no more chemo possible, so it is kind of a “last chance” weapon deployment. So, after chemo, and after we deport the kidneys for allowing this nasty disease to infiltrate my personal borders, we are out of ammo. If my cancer survives these measures, then it wins.
If I win this round, then I am on to “life on dialysis”. Pretty grim, but still “life”. If I survive 2 years without the return of cancer, then possibly a transplant.
I have an appointment with the oncologist on the 21st. I am trying to move this up, but am not having much luck. All of the information exists, all of the tests are done..... the only thing necessary to begin treatment is for the doc to prescribe treatment. It seems a dangerous and unnecessary waste of time to wait 2 weeks. I mean, we just punched holes into my kidneys, and disturbed the cancer..... certainly enough to make it angry and want to find new digs.
In any event, the path is clear, just waiting for the system.
Sunday, February 2, 2014
Update
The latest update:
I went into the hospital for the biopsy of my kidneys, which was successful, and gave us samples of the suspect tissues.
I got out of the hospital on Fri. The 31st, and am just now drug free enough to send out an update. The news is not good..... cancer in both kidneys.
Best case, chemo, then remove both kidneys, then dialysis for two years, then a possible transplant. Must be cancer free for two years before possible transplant.
Worst case, chemo, then remove both kidneys, dialysis, cancer returns, not survivable.
It will take 5 to 7 days to get the pathology report which is necessary to choose a chemo regime.
Dialysis would be 3 times a week at some facility, or every night at home..... anyone interested can google it.
I went into the hospital for the biopsy of my kidneys, which was successful, and gave us samples of the suspect tissues.
I got out of the hospital on Fri. The 31st, and am just now drug free enough to send out an update. The news is not good..... cancer in both kidneys.
Best case, chemo, then remove both kidneys, then dialysis for two years, then a possible transplant. Must be cancer free for two years before possible transplant.
Worst case, chemo, then remove both kidneys, dialysis, cancer returns, not survivable.
It will take 5 to 7 days to get the pathology report which is necessary to choose a chemo regime.
Dialysis would be 3 times a week at some facility, or every night at home..... anyone interested can google it.
The blog I never wanted to post
Jan 20, 2014
Disclaimer:
This blog is to inform my family and friends of my medical issues, therefore allowing me to avoid telling the same depressing story over and over. This blog is not for the squeamish or faint of heart, as it goes into some detail regarding the barbaric nature of the diagnosis and treatment of urinary tract disease. If history is any indicator, some humor, and other side issues may sneak into mix, but they are certainly not the main objective.
OK, so I stopped publishing blogs because there was no medical info disseminate, I wasn’t traveling, and nothing noteworthy in my life. Guess that I could have written “At home, nothing to report”.
On Oct. 12, I was going to update everyone that I was 4 years since my bladder removal operation, and “no evidence of disease”’ (insert happy dance here) but decided to wait until my yearly ct scan which was to be in Dec. At the end of Oct., I was shocked to find blood in my urine, or a better description.... Lots of blood with a little urine mixed in.
Blood in the urine is never a good sign, so off to the urologist for a Ct scan, and what I used to call a “poke and peek”..... an uncomfortable and humiliating procedure if ever there was, where the Doc. runs a camera up into the bladder. So, the look into my bladder found nothing wrong, but the scan showed something “going on” in my kidney..... Not to worry, might just be an infection, however the blood and urine tests didn’t indicate any infection. Just in case, 3 weeks of antibiotic, and 3 week rest, and another Ct scan. Still something in the kidney.... so off to another doctor for a super “poke and peek” where he goes through the bladder and up into the kidney.
The attempt to snake tools up through my urinary plumbing, and into my kidneys, was a failure. Apparently, my rebuilt bladder is not navigable . The good news.... I was asleep for the attempt..... The bad news..... my urinary plumbing is now punishing me for allowing such a vicious violation. The worse news, there is something in both of my kidneys.
The next attempt will be to install tubes through my back, and into my kidneys. Then take samples out through the tubes. One doc does the tubes, and another collects the sample... talk about specialization. The down side, and of course there is always a down side, is that poking holes in my kidneys can allow runaway cancer cells out into the rest of me. The Doc. thinks that my right kidney might be blocked, so he will also install a stent into the ureter.
There really seems to be no other choice. The scans show something going on in each of my kidneys.... “thickening of the lining”.... same type of cells that line the bladder. If it is cancer, which is 80% likely, the answer for one kidney, is chemo, to prevent spread, then remove the affected organ. For both kidneys, they want to try to cure the cancer with chemo, and if unsuccessful, remove both kidneys. I shudder to think of life with no kidneys. Dialysis for 2 years, and, only then, a waiting list for a transplant????? Or maybe the Obama “pain pill”. Yikes, this is getting pretty grim.
Anyway, I am trying to move the diagnostic process forward, but am up against the dozens of things that cause things to take too much time.
I will keep you all posted.
Disclaimer:
This blog is to inform my family and friends of my medical issues, therefore allowing me to avoid telling the same depressing story over and over. This blog is not for the squeamish or faint of heart, as it goes into some detail regarding the barbaric nature of the diagnosis and treatment of urinary tract disease. If history is any indicator, some humor, and other side issues may sneak into mix, but they are certainly not the main objective.
OK, so I stopped publishing blogs because there was no medical info disseminate, I wasn’t traveling, and nothing noteworthy in my life. Guess that I could have written “At home, nothing to report”.
On Oct. 12, I was going to update everyone that I was 4 years since my bladder removal operation, and “no evidence of disease”’ (insert happy dance here) but decided to wait until my yearly ct scan which was to be in Dec. At the end of Oct., I was shocked to find blood in my urine, or a better description.... Lots of blood with a little urine mixed in.
Blood in the urine is never a good sign, so off to the urologist for a Ct scan, and what I used to call a “poke and peek”..... an uncomfortable and humiliating procedure if ever there was, where the Doc. runs a camera up into the bladder. So, the look into my bladder found nothing wrong, but the scan showed something “going on” in my kidney..... Not to worry, might just be an infection, however the blood and urine tests didn’t indicate any infection. Just in case, 3 weeks of antibiotic, and 3 week rest, and another Ct scan. Still something in the kidney.... so off to another doctor for a super “poke and peek” where he goes through the bladder and up into the kidney.
The attempt to snake tools up through my urinary plumbing, and into my kidneys, was a failure. Apparently, my rebuilt bladder is not navigable . The good news.... I was asleep for the attempt..... The bad news..... my urinary plumbing is now punishing me for allowing such a vicious violation. The worse news, there is something in both of my kidneys.
The next attempt will be to install tubes through my back, and into my kidneys. Then take samples out through the tubes. One doc does the tubes, and another collects the sample... talk about specialization. The down side, and of course there is always a down side, is that poking holes in my kidneys can allow runaway cancer cells out into the rest of me. The Doc. thinks that my right kidney might be blocked, so he will also install a stent into the ureter.
There really seems to be no other choice. The scans show something going on in each of my kidneys.... “thickening of the lining”.... same type of cells that line the bladder. If it is cancer, which is 80% likely, the answer for one kidney, is chemo, to prevent spread, then remove the affected organ. For both kidneys, they want to try to cure the cancer with chemo, and if unsuccessful, remove both kidneys. I shudder to think of life with no kidneys. Dialysis for 2 years, and, only then, a waiting list for a transplant????? Or maybe the Obama “pain pill”. Yikes, this is getting pretty grim.
Anyway, I am trying to move the diagnostic process forward, but am up against the dozens of things that cause things to take too much time.
I will keep you all posted.
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