Greetings from my, once again, crazy world of kidney cancer. It feels as though the circus is back in town. If you've been following - you know that the pain has gone to the next level. A little trip to the ER Monday night got me new blood work results and some new polaroids of ye old kidney - but not much else.
Went to the clinic yesterday morning - and once again I am being told that it isn't ethical for them to see me for my kidney cancer and that they won't prescribe me anything for my pain. Basically, there is nothing left for them to prescribe since we have ran through the Fab 4. The next step, so I am told, is morphine or a morphine derivative....but not until I am in hospice. Personally, I view hospice as a step that is way far off in the future.
So - today's installment of the saga: Yesterday, while taking a much needed cancer nap, the nurse for the ER doc who saw me Monday night called and left a message on the house phone and cell phone. Tried to call her back at 4:30pm and they had left for the day. So - called this morning when they opened and the secretary had no clue who I was...that is...until she transferred me to the nurse. Apparently the ER doc, who has a private practice of his own, had a copy of the full CT scan report faxed to him from the hospital yesterday after it was signed by the radiologist. That is why his office was so rabid about contacting me yesterday.
The nurse informs me that I need to get back in with the urologist that I saw in January - immediately. She says that she already called his office yesterday to let them know that I needed to be seen and faxed along a copy of my precious report for his viewing pleasure. A little light reading over some Bruchetta and a glass of wine, I am sure. I told her the issue with the urologist wasn't just the lack of money to pay for surgery - but all of the specialists that I have to get clearance from first - you know, the ones that I can't afford. She claimed to have already explained the urgency of the matter and that all was taken care off.
Since I had her on the phone - and haven't seen the copy of my results yet - I asked her to enlighten me. She said the tumor in the kidney has grown. Well, no earth-shattering news there. That is what we were told Monday night at discharge. So I went on to ask a few more questions....are the liver lesions and abdominal lymph nodes still stable? Has the cancer spread anywhere else? She stated that she couldn't tell me that, that she wasn't a doctor and didn't know how to interpret the results. I kindly explained to her that I am neither a doctor nor radiologist and I do just fine reading from the pre-written script that the radiologist calls an interpretation.....and asked her to just read what it said. She said she couldn't - and for me to call the urologist the minute that her and I hung up from talking. Sounds simple, huh?
Not so simple. I called the urology office - nothing has changed. Cash up front before the doctor will see me. Period. I asked if I could see another doctor in the practice. Apparently the cash and carry thing is standard policy with all the docs there. No cash - no dice. Again - cancer is a game that you must pay to play. Since I have no cash - why I am I still stuck playing this damn game????
Well, anyways.....by 4:30pm today I should have a copy of the report in my hands then I can see for myself what the hell is wrong. I promised to be a good little girl on the phone - and not cry or scream or throw a tantrum if something was that dire - if the urology office would just read me the results. Nope - no can do. Against policy. And I can't talk with the doctor about the results unless I come up with another $140 consultation fee.
In 2 words....This Sucks. Cancer always does. I am but a mere hamster on a wheel at the moment. Round and round and round I go....where this damn thing stops....nobody seems to know.
I sit here - very frustrated - hurting not as bad as Monday night, but a lot more than usual - and starting to panic. On one hand - I already know that I have cancer....and it is in my liver and abdominal lymph nodes - and probably in the lymph nodes in the neck as well. I know eventually it will travel - and set roots yet in another place. Which place is anyone's guess. I felt so good about my 24 month anniversary.....2 years with the blasted beast.....and now I am going down hill once again.
I can't tell you how much I loathe this cancer. I hate it. It isn't fair - I want it gone. But surgery won't take it all away - and surgery is not even an option. Now would be a good time for one of those kidney cancer wonder drugs....ah - but you need an oncologist - who needs a pathology report - which requires a biopsy or surgery - which requires clearance from 5 other specialists - which requires cash. Welcome to the circus. Complete with dancing Jack Russell Terrier in the center ring.
Now I am remembering why I originally started this blog. To vent - my safe place to say whatever I feel, whether it is relevant or not. Not just a safe place for me - but for all who come and visit here. This blog is a safe place for 'all' of us - where it is normal to cry, smile, laugh, scream - whatever you feel. I have rather enjoyed posting mundane things that have no particular significance to cancer. Sometimes it is nice to write - and read - something other than cancer.
I know the results were already written by the radiologist yesterday - but I pray they don't say anything too terrible. They probably do say something that I don't want to see - but until I actually see the words - it isn't as real to me. What is real to me is the insistance and fear in that nurse's voice. Perhaps - if I am lucky - it is just her that is afraid of what I already have - and that it hasn't gotten worse beyond additional growth in the kidney tumor. But, when was the last time you have heard of an ER doc having test results sent directly to their private practice - where I have never been a patient before. Was I discharged too soon? Wouldn't be the first time. I remember being discharged from an ER on October 9th, 2007 before the actual CT results were available. Then receiving a certified letter from that hospital almost 2 weeks later informing me that I had a right renal mass.
This is getting a little too familiar. I don't think I like where this is going. I will post more when I get the results in hand later today and have a chance to process what I read.
Went to the clinic yesterday morning - and once again I am being told that it isn't ethical for them to see me for my kidney cancer and that they won't prescribe me anything for my pain. Basically, there is nothing left for them to prescribe since we have ran through the Fab 4. The next step, so I am told, is morphine or a morphine derivative....but not until I am in hospice. Personally, I view hospice as a step that is way far off in the future.
So - today's installment of the saga: Yesterday, while taking a much needed cancer nap, the nurse for the ER doc who saw me Monday night called and left a message on the house phone and cell phone. Tried to call her back at 4:30pm and they had left for the day. So - called this morning when they opened and the secretary had no clue who I was...that is...until she transferred me to the nurse. Apparently the ER doc, who has a private practice of his own, had a copy of the full CT scan report faxed to him from the hospital yesterday after it was signed by the radiologist. That is why his office was so rabid about contacting me yesterday.
The nurse informs me that I need to get back in with the urologist that I saw in January - immediately. She says that she already called his office yesterday to let them know that I needed to be seen and faxed along a copy of my precious report for his viewing pleasure. A little light reading over some Bruchetta and a glass of wine, I am sure. I told her the issue with the urologist wasn't just the lack of money to pay for surgery - but all of the specialists that I have to get clearance from first - you know, the ones that I can't afford. She claimed to have already explained the urgency of the matter and that all was taken care off.
Since I had her on the phone - and haven't seen the copy of my results yet - I asked her to enlighten me. She said the tumor in the kidney has grown. Well, no earth-shattering news there. That is what we were told Monday night at discharge. So I went on to ask a few more questions....are the liver lesions and abdominal lymph nodes still stable? Has the cancer spread anywhere else? She stated that she couldn't tell me that, that she wasn't a doctor and didn't know how to interpret the results. I kindly explained to her that I am neither a doctor nor radiologist and I do just fine reading from the pre-written script that the radiologist calls an interpretation.....and asked her to just read what it said. She said she couldn't - and for me to call the urologist the minute that her and I hung up from talking. Sounds simple, huh?
Not so simple. I called the urology office - nothing has changed. Cash up front before the doctor will see me. Period. I asked if I could see another doctor in the practice. Apparently the cash and carry thing is standard policy with all the docs there. No cash - no dice. Again - cancer is a game that you must pay to play. Since I have no cash - why I am I still stuck playing this damn game????
Well, anyways.....by 4:30pm today I should have a copy of the report in my hands then I can see for myself what the hell is wrong. I promised to be a good little girl on the phone - and not cry or scream or throw a tantrum if something was that dire - if the urology office would just read me the results. Nope - no can do. Against policy. And I can't talk with the doctor about the results unless I come up with another $140 consultation fee.
In 2 words....This Sucks. Cancer always does. I am but a mere hamster on a wheel at the moment. Round and round and round I go....where this damn thing stops....nobody seems to know.
I sit here - very frustrated - hurting not as bad as Monday night, but a lot more than usual - and starting to panic. On one hand - I already know that I have cancer....and it is in my liver and abdominal lymph nodes - and probably in the lymph nodes in the neck as well. I know eventually it will travel - and set roots yet in another place. Which place is anyone's guess. I felt so good about my 24 month anniversary.....2 years with the blasted beast.....and now I am going down hill once again.
I can't tell you how much I loathe this cancer. I hate it. It isn't fair - I want it gone. But surgery won't take it all away - and surgery is not even an option. Now would be a good time for one of those kidney cancer wonder drugs....ah - but you need an oncologist - who needs a pathology report - which requires a biopsy or surgery - which requires clearance from 5 other specialists - which requires cash. Welcome to the circus. Complete with dancing Jack Russell Terrier in the center ring.
Now I am remembering why I originally started this blog. To vent - my safe place to say whatever I feel, whether it is relevant or not. Not just a safe place for me - but for all who come and visit here. This blog is a safe place for 'all' of us - where it is normal to cry, smile, laugh, scream - whatever you feel. I have rather enjoyed posting mundane things that have no particular significance to cancer. Sometimes it is nice to write - and read - something other than cancer.
I know the results were already written by the radiologist yesterday - but I pray they don't say anything too terrible. They probably do say something that I don't want to see - but until I actually see the words - it isn't as real to me. What is real to me is the insistance and fear in that nurse's voice. Perhaps - if I am lucky - it is just her that is afraid of what I already have - and that it hasn't gotten worse beyond additional growth in the kidney tumor. But, when was the last time you have heard of an ER doc having test results sent directly to their private practice - where I have never been a patient before. Was I discharged too soon? Wouldn't be the first time. I remember being discharged from an ER on October 9th, 2007 before the actual CT results were available. Then receiving a certified letter from that hospital almost 2 weeks later informing me that I had a right renal mass.
This is getting a little too familiar. I don't think I like where this is going. I will post more when I get the results in hand later today and have a chance to process what I read.