A friend of ours at the hospital heard about the MRI need and managed to get us on the schedule for today, so the MRI is already done. Yeah! Now all we need is a reading so that the Onc can pick a treatment plan. Also had the LDH and other labs drawn while at the hospital.
I've had many MRI's of my spine over the years, but today's was the hardest. For some reason I basically lost it in the scanner. It just got into my head that the inside of the tube looked like a coffin, and that I was going to be buried alive and no one would notice it. Suddenly, I just had to leave, and I mean right now. My chest got tight, I couldn't breathe; it was awful This all hit about halfway through the test, and when the tech mentioned that we would soon be ready to inject and redo the scans I almost hauled my butt out of the tube then and there. I managed to hold it somewhat together for the next 10 minutes of the scan, and then the tech came on the intercom and said that the radiologist had decided not to do a contrast study. My god, I almost cried when they pulled me out of the tube.
I will never, ever, get into a MRI again without sedation. I can still close my eyes and feel the walls of the tube squeezing me out of existence...
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Thursday, July 31, 2008
Meeting the Oncologist
Yesterday we met the Oncologist and talked about treatment plans and such. It turns out that I have:
He is advising that I will also need a MRI of my spine, as the mets to L1 could be life threatening (and the rest isn't?). Until the MRI is done he can't make a decision about what to start, but the leading options are chemotherapy for the kidney cancer or radiation for the spine mets. We also discovered that he likes and uses the guidelines from the National Comprehensive Cancer Network.
If we go for the chemo it will be 4weeks of Sutent followed by a 2 week vacation. After 2 runs he will rescan me and then decide what next. I argued a bit about that, and got him to promise that if the remaining scalp lesion shows any changes we could rescan after the first run of meds. He was rather noncommittal about surgery for the tumor in the left kidney, but I want the f'ing thing gone. I find it hard to believe that leaving it in place is a good thing.
After we got home I promptly lost it. So did Robin. Eventually we managed to hold it together long enough to pick-up the kids from day care. They will hopefully never need to know about any of this. I shudder to think what I would be doing without my family. I do love them so.
Oh, some good news. After we got home yesterday I threw out my cigarettes. I know, it may be a little late for that; but this will prove to be a battle of inches, and that is the first inch that I can claim as a victory.
Time to wait some more...
Read more!
- Renal Tumors, 9cm on the left and 2 of 1cm or less on the right.
- Mets to L1 in my spine.
- Mets to the skin (my scalp), including 1 lesion that I haven't mentioned until now. This one started as a zit.
- Mets to the Lungs--what I am calling shotgun effect, they all look like small #8 pellets on the CT and are scattered about.
- Mets to the abdominal nodes.
- Mets to the mediastinal nodes.
- Survival is about 22% at 5 years.
He is advising that I will also need a MRI of my spine, as the mets to L1 could be life threatening (and the rest isn't?). Until the MRI is done he can't make a decision about what to start, but the leading options are chemotherapy for the kidney cancer or radiation for the spine mets. We also discovered that he likes and uses the guidelines from the National Comprehensive Cancer Network.
If we go for the chemo it will be 4weeks of Sutent followed by a 2 week vacation. After 2 runs he will rescan me and then decide what next. I argued a bit about that, and got him to promise that if the remaining scalp lesion shows any changes we could rescan after the first run of meds. He was rather noncommittal about surgery for the tumor in the left kidney, but I want the f'ing thing gone. I find it hard to believe that leaving it in place is a good thing.
After we got home I promptly lost it. So did Robin. Eventually we managed to hold it together long enough to pick-up the kids from day care. They will hopefully never need to know about any of this. I shudder to think what I would be doing without my family. I do love them so.
Oh, some good news. After we got home yesterday I threw out my cigarettes. I know, it may be a little late for that; but this will prove to be a battle of inches, and that is the first inch that I can claim as a victory.
Time to wait some more...
Read more!
Tuesday, July 29, 2008
The Next Nuking
OK, I had the CT of the Chest today. Again done with and without contrast. Boy, I am getting tired of needles, and here I've only been stuck three times in 10 days. What a weenie...
Again got a noncommittal response to my question about the CT. This time from a tech that my wife and I have known for years. That is definitely not good.
Yet more waiting begins. At least most of the diagnostic stuff (I think) is over.
Robin came to this appointment as well. God, I do love this woman.
Read more!
Again got a noncommittal response to my question about the CT. This time from a tech that my wife and I have known for years. That is definitely not good.
Yet more waiting begins. At least most of the diagnostic stuff (I think) is over.
Robin came to this appointment as well. God, I do love this woman.
Read more!
Friday, July 25, 2008
Some more answers
Saw the Urologist today. Seems that he has also had Kidney cancer many years ago. Go figure the odds of that.
Turns out that the cancer is not just in the kidneys. There is also metastasis to the bone--on the process of L1 in my spine--and possibly to my lungs. Time for another CT, this time of the chest. The Uro is unwilling to commit to any course of treatment; it seems that I will have to work through the Oncologist for that. He does promise that if I need surgery he can have me on the table the same day that I call him.
The Oncologist appointment that I made will have to be cancelled. The Uro has a different one that he wants me to see. Ah well, more waiting. At least I can work on the scan while I wait for an appointment.
At least Robin was with me to hear all the news. It makes it easier.
The boss is back on Monday, so today is the last real day that I have to cover the department. Didn't really work today, so I guess this is the first "official" day of my medical leave. We'll see how long it takes me to go stark, raving mad sitting at home. As I recall, after my back surgery 6 years ago it took about 2 weeks for me to lose it...
Read more!
Turns out that the cancer is not just in the kidneys. There is also metastasis to the bone--on the process of L1 in my spine--and possibly to my lungs. Time for another CT, this time of the chest. The Uro is unwilling to commit to any course of treatment; it seems that I will have to work through the Oncologist for that. He does promise that if I need surgery he can have me on the table the same day that I call him.
The Oncologist appointment that I made will have to be cancelled. The Uro has a different one that he wants me to see. Ah well, more waiting. At least I can work on the scan while I wait for an appointment.
At least Robin was with me to hear all the news. It makes it easier.
The boss is back on Monday, so today is the last real day that I have to cover the department. Didn't really work today, so I guess this is the first "official" day of my medical leave. We'll see how long it takes me to go stark, raving mad sitting at home. As I recall, after my back surgery 6 years ago it took about 2 weeks for me to lose it...
Read more!
Thursday, July 24, 2008
The Hammer Falls
Got another of those infamous calls from the doctor today. This time it was suggested that I bring my wife. And come right away.
Turns out that the cancer is in my left and right kidneys. The tumor on the left side is about 9 cm. The tumors on the right side are both 1 cm or less. I will need to see the Urologist and the Oncologist ASAP. My Doctor has called them, and wants to know if I am free Friday. What can I say to that? "No, I have more important things that my life to deal with right now?"
Time for more waiting. At least I will also get the stitches from the scalp wounds on friday. Maybe I can pick the Surgeon's brain then.
My wife still does not seem to really "get it". Ah well, denial is a wonderful thing, and we all process things at our own pace.
Read more!
Turns out that the cancer is in my left and right kidneys. The tumor on the left side is about 9 cm. The tumors on the right side are both 1 cm or less. I will need to see the Urologist and the Oncologist ASAP. My Doctor has called them, and wants to know if I am free Friday. What can I say to that? "No, I have more important things that my life to deal with right now?"
Time for more waiting. At least I will also get the stitches from the scalp wounds on friday. Maybe I can pick the Surgeon's brain then.
My wife still does not seem to really "get it". Ah well, denial is a wonderful thing, and we all process things at our own pace.
Read more!
Wednesday, July 23, 2008
CT Scans and Evasions
Just got back from the CT. Full exam of the Abdomen and Pelvis, with and without contrast. Test went OK, but when I asked the tech if the "pretty pictures came out" all she would say was that the films didn't need to be repeated and would be read soon. All that without managing to look me in the eye. That can't be good.
Working while we go through all of this is really starting to get hard. I can't wait until my boss is back from vacation. Then I can drop the job and concentrate on this stuff.
Time to go pick-up the family at the airport. Read more!
Working while we go through all of this is really starting to get hard. I can't wait until my boss is back from vacation. Then I can drop the job and concentrate on this stuff.
Time to go pick-up the family at the airport. Read more!
Friday, July 18, 2008
Let the Waiting begin...
Took the wife and kids to the airport today for their flight back east. I am already wondering how I could have been so stupid as to let them go! So much for bravery and all that...
Telling my wife last night sucked. I don't think that it really sunk in for her.
The CT is at 4pm on Wednesday. Here's hoping. Read more!
Telling my wife last night sucked. I don't think that it really sunk in for her.
The CT is at 4pm on Wednesday. Here's hoping. Read more!
Thursday, July 17, 2008
Opening Post
Welcome to my blog, as the saying goes. I initially toyed with the idea of starting a blog for a few months, but have decided today to take the plunge after a friend suggested that it would be a good outlet for me.
You see, today at 3pm my doctor told me that the two wounds on my scalp that had to be excised and closed earlier this week are something called Clear Cell. Clear Cell is a type of cancer that is most commonly found in the Kidneys, and for it to be found on my scalp means that the cancer has already started to spread.
This is just too fucking strange. You bump your head, get an infection in the wound, go to the doctor, and realistically expect that they will fix things up. Instead I am now being told that I have cancer, and that I need a bunch of tests to see how far it has spread. So, now to wait for the radiology folks to call and schedule me for a CT. Tomorrow I also get to go in and get stuck for some labs.
(BTW, when in Med School do they tell Doctor's that calling a patient and telling them to come in "right away" is less traumatic than just telling them the news over the phone? They need to drop that part of the curriculum. The moment the Medical Assistant opened her mouth I knew that something was wrong, and hearing "the Doctor wants to talk to you" did NOT help things. The truth is always better than evasions.)
So much for my ideas about a blog that focused on alternative form factor PC's and electronic medical records in a hospital setting, I think I'll focus on Kidney cancer instead. Read more!
You see, today at 3pm my doctor told me that the two wounds on my scalp that had to be excised and closed earlier this week are something called Clear Cell. Clear Cell is a type of cancer that is most commonly found in the Kidneys, and for it to be found on my scalp means that the cancer has already started to spread.
This is just too fucking strange. You bump your head, get an infection in the wound, go to the doctor, and realistically expect that they will fix things up. Instead I am now being told that I have cancer, and that I need a bunch of tests to see how far it has spread. So, now to wait for the radiology folks to call and schedule me for a CT. Tomorrow I also get to go in and get stuck for some labs.
(BTW, when in Med School do they tell Doctor's that calling a patient and telling them to come in "right away" is less traumatic than just telling them the news over the phone? They need to drop that part of the curriculum. The moment the Medical Assistant opened her mouth I knew that something was wrong, and hearing "the Doctor wants to talk to you" did NOT help things. The truth is always better than evasions.)
So much for my ideas about a blog that focused on alternative form factor PC's and electronic medical records in a hospital setting, I think I'll focus on Kidney cancer instead. Read more!
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