Just in case people had been checking in on the surgery question, I never got a call from my oncologist on Wednesday. I tried calling on Friday but the office was closed. So I guess I won't know until Monday if I go into surgery on Thursday.
In the meantime, I have started back on the ibuprofen. When I saw the radiation oncologist Tuesday, he said that would be fine. I was really having to hit the vicodan for pain, but ibuprofen works pretty well. It seems odd that an over the counter med would work better that a prescription med. I guess it must be because it's also an anti-inflamatory. I even went for my usual walk around Seward Park (2.5 miles) yesterday morning with no problems.
I went in for my dry radiation run yesterday. I think the purpose was to get the field of radiation fine tuned so on Monday I can just be in and out in 30 minutes. I'm a little worried that one hand (radiation) doesn't know what the other (surgery) is doing. I asked if I should be starting on Monday if I'm having surgery on Thursday and they seemed surprised at that. I wish I would have called late Wednesday to check on the surgery but that office has often called me after 6pm with news. I guess I should have know that the day before Thanksgiving would have been different. So two more days of suspense...
Saturday, November 29, 2008
Wednesday, November 26, 2008
Tattoo Me
I had my first radiation appointment yesterday to discuss the treatment with the doctor. It was an encouraging meeting and he seemed very positive that the radiation would be able to kill the groin tumor and relieve the pain I've been experiencing in my hip. He gave me a copy of one of the CT scan photos that shows pretty clearly that the tumor is already in my hip bone. I thought I had understood from my oncologists that it was "beginning" to encroach on my hip bone. It looks very "encroached" in the picture. I'm surprised I hadn't been in more pain, frankly, although yesterday was a pretty miserable day, painwise. I didn't take a Vicodan for it in the morning because I knew I had to drive to the appointment. By time I finally took one, it was too late. I had been thinking that walking was helping with the pain, but I'm thinking now that it may have actually contributed to it so I think I will cut back on that activity.
Anyway, they had a slot available in the afternoon for the simulation set-up so I took it. The process took about an hour and I got my first tattoo -- three in fact! One on my belly and one on both hips. I will go in Friday for my first "treatment" which is really a dry run. The first real session will be Monday the 1st. The doctor sounded pretty convinced that side effects shouldn't be too bad since it should miss most of my bladder and colon. I will do 17 sessions and will finish on December 22nd. Just in time for Christmas! That schedule may get thrown off if I do surgery. The doc said that for the first few days as the tumor starts dying off, the pain level may go up with the swelling, but it should get better soon so I'm ready to get started!
Anyway, they had a slot available in the afternoon for the simulation set-up so I took it. The process took about an hour and I got my first tattoo -- three in fact! One on my belly and one on both hips. I will go in Friday for my first "treatment" which is really a dry run. The first real session will be Monday the 1st. The doctor sounded pretty convinced that side effects shouldn't be too bad since it should miss most of my bladder and colon. I will do 17 sessions and will finish on December 22nd. Just in time for Christmas! That schedule may get thrown off if I do surgery. The doc said that for the first few days as the tumor starts dying off, the pain level may go up with the swelling, but it should get better soon so I'm ready to get started!
Friday, November 21, 2008
Biopsy Results
I got the results this afternoon. It is a recurrance. It was actually a relief to hear that just because I had been so worried it was a serious lymphoma. At least I know what I'm dealing with here and it is a slow growing cancer. On the other hand, slow growing cancers do not respond as well to chemo and my prior treatment did not irradicate it so it seems like it is still something that I will be dealing with for the rest of my life. That's also depressing, but if I can get long remissions between bouts of chemo I'll take that over the alternative.
The treatment plan is firming up, but surgery or no surgery is still up in the air. My oncologist is taking my case before the "tumor board" for discussion next Wednesday and they will let me know then if I will do the surgery. If so, that will happen on December 4th. If no surgery, I start chemo December 4th. Chemo will be taxol/carboplatin again... the same combo I did in 2003-4, on a three week cycle. Not fun, but mostly just around the days 3 - 5 after the infusion. The rest of the time I was fatigued, but wasn't sick. I don't know how much worse the radiation will make it. I meet with the radiation oncologist on Tuesday. If no surgery, I expect that will start the first week in December as well.
And if no surgery, I will try to work as much as I can between treatments. I will be in a division that allows a more flexible work schedule and I can stop working with less trouble if I need to do that, too.
I have felt much better the last couple days except for the stress of waiting for the news. I didn't get alot of sleep again the night of the biopsy because the incisions were uncomfortable, but the following night I got a full night of sleep and felt good on Thursday -- with only an occasional Tylenol for painkillers. Another good night last night and no pain today. The incisions are really healing nicely. The skin irritation from the tape is the worst part.
Now I plan to enjoy as much as I can of the next 9 days of feeling pretty good. :)
The treatment plan is firming up, but surgery or no surgery is still up in the air. My oncologist is taking my case before the "tumor board" for discussion next Wednesday and they will let me know then if I will do the surgery. If so, that will happen on December 4th. If no surgery, I start chemo December 4th. Chemo will be taxol/carboplatin again... the same combo I did in 2003-4, on a three week cycle. Not fun, but mostly just around the days 3 - 5 after the infusion. The rest of the time I was fatigued, but wasn't sick. I don't know how much worse the radiation will make it. I meet with the radiation oncologist on Tuesday. If no surgery, I expect that will start the first week in December as well.
And if no surgery, I will try to work as much as I can between treatments. I will be in a division that allows a more flexible work schedule and I can stop working with less trouble if I need to do that, too.
I have felt much better the last couple days except for the stress of waiting for the news. I didn't get alot of sleep again the night of the biopsy because the incisions were uncomfortable, but the following night I got a full night of sleep and felt good on Thursday -- with only an occasional Tylenol for painkillers. Another good night last night and no pain today. The incisions are really healing nicely. The skin irritation from the tape is the worst part.
Now I plan to enjoy as much as I can of the next 9 days of feeling pretty good. :)
Tuesday, November 18, 2008
Biopsy Day
I woke up this morning about 4:30am, thankfuly pain free. I couldn't have anything by mouth after midnight so I wouldn't have been able to take the vicodan if I had been hurting. It was an encouraging start after such a frustrating and scary day yesterday. It again reinforces my feeling that Lipitor makes the cancer hurt more.
Got to the hospital around 8:00am, got checked in and found out my doctor was the same guy who had put my last port in 5 years ago. He didn't remember me, but his name is so distinctive, I remembered him. When the CT scan room was available, they started the IV and wheeled me in. They strapped my arms to my chest to keep me from moving around. The numbing injection was wasn't that bad and the only slight bit of pain was that final push positioning the needle. After taking several samples I had to lay there and wait 15 minutes with the sample needle still in (didn't hurt) while they checked to make sure they were good enough. Lucky me -- they got good samples the first time.
Then it was off to the surgical room for the port implant. That went pretty similar to the first time around. A little stinging with the numbing agent and a bit of pain when they push the needle into the jugular vein. Then just holding still while they get the port stiched into place and everything sown up. The assistant tried to sedate me into unconciousness but I was awake through the whole thing again. She was really surprised that she hadn't knocked me out.
Back to recovery for some apple juice and I was dressed and discharged with follow-up instructions. I was pretty woozy and thought I might barf as we were leaving the parking garage, but fortunately that passed. Felt better after some coffee and something to eat. I've got a sore neck and it looks like the tape they used is irritating my skin so I may need to change the dressing earlier than I wanted to. Not sure what to use instead either. And when the numbing agent wore off from the biopsy, the groin started to ache again. One vicodan took care of that for now.
Now 2 more days of uncertainty... imagining the worst. Waiting is definitely no fun, except for those moments that I can tell myself for a little while that it may not be a worse case scenario.
Got to the hospital around 8:00am, got checked in and found out my doctor was the same guy who had put my last port in 5 years ago. He didn't remember me, but his name is so distinctive, I remembered him. When the CT scan room was available, they started the IV and wheeled me in. They strapped my arms to my chest to keep me from moving around. The numbing injection was wasn't that bad and the only slight bit of pain was that final push positioning the needle. After taking several samples I had to lay there and wait 15 minutes with the sample needle still in (didn't hurt) while they checked to make sure they were good enough. Lucky me -- they got good samples the first time.
Then it was off to the surgical room for the port implant. That went pretty similar to the first time around. A little stinging with the numbing agent and a bit of pain when they push the needle into the jugular vein. Then just holding still while they get the port stiched into place and everything sown up. The assistant tried to sedate me into unconciousness but I was awake through the whole thing again. She was really surprised that she hadn't knocked me out.
Back to recovery for some apple juice and I was dressed and discharged with follow-up instructions. I was pretty woozy and thought I might barf as we were leaving the parking garage, but fortunately that passed. Felt better after some coffee and something to eat. I've got a sore neck and it looks like the tape they used is irritating my skin so I may need to change the dressing earlier than I wanted to. Not sure what to use instead either. And when the numbing agent wore off from the biopsy, the groin started to ache again. One vicodan took care of that for now.
Now 2 more days of uncertainty... imagining the worst. Waiting is definitely no fun, except for those moments that I can tell myself for a little while that it may not be a worse case scenario.
Monday, November 17, 2008
The bad news
Five years, cancer free. This is the year I get to celebrate, finally. Right?
Not so fast...
On November 6, 2003, I had a hysterectomy for endometrial cancer. The surgery was followed by six rounds of chemo that finished at the end of March 2004. A baseline CT scan in April confirmed no evidence of disease. It was a miserable 6 months but I had a real possibility of beating the cancer.
The next two years I saw the oncologist every 3 months for exams and blood tests. Every time that date rolled around the anxiety resurfaced and for the week after I stressed out waiting for the postcard with results. After 2 years the exams moved to an every 6 months schedule. In May 2006 I had my gall bladder removed. While they were at it, I asked them to have a look around and see if things looked clear and, if so, remove the portacath I had carried under the skin of my chest for years as a reminder of the threat hanging over my head. Everything looked good so the port came out. With the exams less frequent and the port gone, I actually started to believe I had really put the nightmare behind me.
In April 2008 I had my regular 6 month exam. Two days later I got a call on my cell and saw it was from my oncologist's office. My heart leapt into my throat. The CA 125, a cancer tumor marker, had risen to 17. My number had always ranged from 6-9. They wanted to retest in 3 weeks. I sweated out the next 3 weeks cringing at every ache and pain. But I noticed a pattern to the achiness in that if I forgot a dose of Lipitor, the achiness would go away. I quit the Lipitor for the week prior to the retest and the CA 125 dropped to 12. They asked me to come back in 3 weeks just to be sure, but I was convinced I knew what the problem had been. I also got busy at work and moved my office down to Kent which made returning for the test difficult. Next thing I knew it was August and I would be back for a regular month exam in October so I blew it off.
Big mistake.
I went in for the October exam feeling pretty good. The exam went well, but I waited anxiously for that follow up phone call for 2 or 3 days. It never came so I assumed that the number was normal and a postcard would come with the results about 10 days later as usual. However, 10 days later, another phone call. This time the number was 38! I was alarmed. They asked me to come back in 4 weeks this time and set a date to return of November 11th.
I went in on the 11th for the test. They had said if I went in early they would have the results that afternoon. I waited very anxiously all day and no call came. I started to hope that things had gone well and they would just send a card. Again, I was wrong. About 3:30 I got a call that the number had gone up to 48. They wanted me to go in the following morning for a CT scan. I went in and was told the results would be available in 48 hours unless there was something that needed to be addressed quickly. I could expect to hear something late Friday or Monday.
Two hours later, I was driving into my office when the phone rang... the oncologist's office again. I knew it was bad news at that point. She told me the CT scan showed two tumors -- one on my spleen and one in my lower left groin. I had been complaning for months about a nagging tweeking or tightness in my groin. I assumed I had pulled something and it wasn't healing right. They made another appointment the following morning to see the oncologist to discuss the results.
The next morning I was kept waiting for close to 45 minutes to speak with my doctor. After a quick exam, he gave me the run-down. I needed a biopsy to determine what kind of cancer it was. It could be a recurrance of the endometrial cancer or possibly a completely new cancer... a lymphoma. If a recurrance, and if no other tumors but the two that showed on the scan, he said he could take out the spleen. I would then get radiation for the groin tumor and chemo to get anything missed. He thought that I had some chance of a cure, but more likely, another lengthy remission like I had already enjoyed. Certainly I would be doing radiation and some kind of chemo. Surgery was the question.
He did not go into detail regarding treatment if it was a lymphoma. He doesn't specialize in that. But I got the impression he thought lymphoma was more likely. What is scary about that prospect is that it could be something aggresive, whereas the endometrial cancer had been low grade and slow growing. So my odds are better with the recurrance than with something new.
That's what I have been thinking over the past few days, anyway, waiting for tomorrow's biopsy. While I'm in there, they will implant another port for the chemo. From the time I knew it was cancer again, the persistent aches and pains have seemed more painful. I hadn't noticed any pain in the area of my spleen, but now I swear I can feel something. In preparation for the biopsy tomorrow, I had to quit taking the ibuprofen that knocked the achiness down. Last night my hip started aching and the Tylenol just wasn't cutting it. I could not get comfortable and was up basically all night. This morning I filled the Vicodan prescription as soon as the pharmacy opened. I had to take 2 and wait a couple hours before things eased up. Since then I've only had to take 1 every 4-5 hours. I'm hoping it'll feel better tomorrow since it usualy comes and goes. Of course sticking a needle in for the biopsy probably won't help.
I don't know if they will tell me tomorrow what kind of cancer it is or if I'll have to wait to hear it from the doctor on Friday. The intake interviewer asked me how I respond to bad news so I'm already worried.
Not so fast...
On November 6, 2003, I had a hysterectomy for endometrial cancer. The surgery was followed by six rounds of chemo that finished at the end of March 2004. A baseline CT scan in April confirmed no evidence of disease. It was a miserable 6 months but I had a real possibility of beating the cancer.
The next two years I saw the oncologist every 3 months for exams and blood tests. Every time that date rolled around the anxiety resurfaced and for the week after I stressed out waiting for the postcard with results. After 2 years the exams moved to an every 6 months schedule. In May 2006 I had my gall bladder removed. While they were at it, I asked them to have a look around and see if things looked clear and, if so, remove the portacath I had carried under the skin of my chest for years as a reminder of the threat hanging over my head. Everything looked good so the port came out. With the exams less frequent and the port gone, I actually started to believe I had really put the nightmare behind me.
In April 2008 I had my regular 6 month exam. Two days later I got a call on my cell and saw it was from my oncologist's office. My heart leapt into my throat. The CA 125, a cancer tumor marker, had risen to 17. My number had always ranged from 6-9. They wanted to retest in 3 weeks. I sweated out the next 3 weeks cringing at every ache and pain. But I noticed a pattern to the achiness in that if I forgot a dose of Lipitor, the achiness would go away. I quit the Lipitor for the week prior to the retest and the CA 125 dropped to 12. They asked me to come back in 3 weeks just to be sure, but I was convinced I knew what the problem had been. I also got busy at work and moved my office down to Kent which made returning for the test difficult. Next thing I knew it was August and I would be back for a regular month exam in October so I blew it off.
Big mistake.
I went in for the October exam feeling pretty good. The exam went well, but I waited anxiously for that follow up phone call for 2 or 3 days. It never came so I assumed that the number was normal and a postcard would come with the results about 10 days later as usual. However, 10 days later, another phone call. This time the number was 38! I was alarmed. They asked me to come back in 4 weeks this time and set a date to return of November 11th.
I went in on the 11th for the test. They had said if I went in early they would have the results that afternoon. I waited very anxiously all day and no call came. I started to hope that things had gone well and they would just send a card. Again, I was wrong. About 3:30 I got a call that the number had gone up to 48. They wanted me to go in the following morning for a CT scan. I went in and was told the results would be available in 48 hours unless there was something that needed to be addressed quickly. I could expect to hear something late Friday or Monday.
Two hours later, I was driving into my office when the phone rang... the oncologist's office again. I knew it was bad news at that point. She told me the CT scan showed two tumors -- one on my spleen and one in my lower left groin. I had been complaning for months about a nagging tweeking or tightness in my groin. I assumed I had pulled something and it wasn't healing right. They made another appointment the following morning to see the oncologist to discuss the results.
The next morning I was kept waiting for close to 45 minutes to speak with my doctor. After a quick exam, he gave me the run-down. I needed a biopsy to determine what kind of cancer it was. It could be a recurrance of the endometrial cancer or possibly a completely new cancer... a lymphoma. If a recurrance, and if no other tumors but the two that showed on the scan, he said he could take out the spleen. I would then get radiation for the groin tumor and chemo to get anything missed. He thought that I had some chance of a cure, but more likely, another lengthy remission like I had already enjoyed. Certainly I would be doing radiation and some kind of chemo. Surgery was the question.
He did not go into detail regarding treatment if it was a lymphoma. He doesn't specialize in that. But I got the impression he thought lymphoma was more likely. What is scary about that prospect is that it could be something aggresive, whereas the endometrial cancer had been low grade and slow growing. So my odds are better with the recurrance than with something new.
That's what I have been thinking over the past few days, anyway, waiting for tomorrow's biopsy. While I'm in there, they will implant another port for the chemo. From the time I knew it was cancer again, the persistent aches and pains have seemed more painful. I hadn't noticed any pain in the area of my spleen, but now I swear I can feel something. In preparation for the biopsy tomorrow, I had to quit taking the ibuprofen that knocked the achiness down. Last night my hip started aching and the Tylenol just wasn't cutting it. I could not get comfortable and was up basically all night. This morning I filled the Vicodan prescription as soon as the pharmacy opened. I had to take 2 and wait a couple hours before things eased up. Since then I've only had to take 1 every 4-5 hours. I'm hoping it'll feel better tomorrow since it usualy comes and goes. Of course sticking a needle in for the biopsy probably won't help.
I don't know if they will tell me tomorrow what kind of cancer it is or if I'll have to wait to hear it from the doctor on Friday. The intake interviewer asked me how I respond to bad news so I'm already worried.
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