Gentle Readers,
This morning the surgeon who did the biopsy reported that he could neither feel nor see any cancer. This was confirmed by his 3rd-year resident.
At the end of June, the radiologist, too, thought it was gone. It is such very good news. As with any cancer, it is, of course, impossible to know if it is all gone. I choose the view that it is gone.
I'll continue to see these two doctors and the oncologist for several years and they'll continue to watch for recurrence.
The port will come out in a few weeks.
So now it just remains for the bowel and bladder functions to return to normal. They're getting there, poco a poco - little by little. I'm impatient but I know it is likely that there will be complete or nearly complete healing and it is going to take months. The skin peeled off and new skin grew back quite quickly compared to the time it's taking for internal healing. There are worse things than the occasional Depends or pads days. I'm grateful that on the whole my body has responded well to the brutal treatments.
Thank you caring about me during this ordeal.
Affectionately,
Betsy
Monday, July 7, 2008
Wednesday, June 18, 2008
18 June Betsy's new 'do and good news!
Well, I'd said no blog for a couple of weeks but when my hair started coming out in handfuls I got my head shaved. This is a drag and I shed some tears but it isn't nearly as bad as mouth sores. It's better to be bald in summer than winter, no? I thought, well, I'll put up a few photos. I have a new pirate's cap and maybe I'll get a picture of that up after I get some big silver hoop earrings. The new photos are part of the slide show. Just work your way through.
And this afternoon there was good news at the oncologist's. After she admired my pirate cap, she did an exam and said she couldn't feel the cancer at all. So that is a good milestone. Next week I'll see the radiology oncologist and then a couple of weeks later the surgeon will check in. But I'm feeling hopeful. I've resisted feeling optimistic because the healing process has been very hard.
Well, now I really don't think you'll hear from me for a couple of weeks. Maybe after the radiologist's visit.
XXXOOO
Betsy
And this afternoon there was good news at the oncologist's. After she admired my pirate cap, she did an exam and said she couldn't feel the cancer at all. So that is a good milestone. Next week I'll see the radiology oncologist and then a couple of weeks later the surgeon will check in. But I'm feeling hopeful. I've resisted feeling optimistic because the healing process has been very hard.
Well, now I really don't think you'll hear from me for a couple of weeks. Maybe after the radiologist's visit.
XXXOOO
Betsy
Monday, June 16, 2008
16 June Monday
Gentle Readers,
Progress continues slowly but, I think, surely. I noticed yesterday with a little bit bit of surprise that it is pretty easy to sit. Mostly these days I'm dealing with tiresome continence issues.
My medical oncologist said that I need to make plans for positive events away from home and so my first trip out beyond the PO and Walgreens was to Santa Fe to an open house at the Santa Fe Complex. http://sfcomplex.org/wordpress/ It was fun and terrific to be out and about.
I have a regular checkup this week and will see the radiology oncologist on the 27th. I'm not sure what action besides wait-and-see will come out of that appointment. I'm still planning (I'm a little tentative) to go to San Antonio to a meeting on the 27th for several days.
So this blog is winding down. I'm making a note to myself to blog again on Sunday the 29th.
Again, thank you for writing and sending ideas to aid the healing process. You are truly a caring community.
Betsy
Progress continues slowly but, I think, surely. I noticed yesterday with a little bit bit of surprise that it is pretty easy to sit. Mostly these days I'm dealing with tiresome continence issues.
My medical oncologist said that I need to make plans for positive events away from home and so my first trip out beyond the PO and Walgreens was to Santa Fe to an open house at the Santa Fe Complex. http://sfcomplex.org/wordpress/ It was fun and terrific to be out and about.
I have a regular checkup this week and will see the radiology oncologist on the 27th. I'm not sure what action besides wait-and-see will come out of that appointment. I'm still planning (I'm a little tentative) to go to San Antonio to a meeting on the 27th for several days.
So this blog is winding down. I'm making a note to myself to blog again on Sunday the 29th.
Again, thank you for writing and sending ideas to aid the healing process. You are truly a caring community.
Betsy
Monday, June 9, 2008
9 June 2008
The oncologist report today was very positive. She noted that the burns on the outside of my body are mostly healed. I had observed that myself, of course, but hearing her confirmation was like getting a good report card. She says it will be at least 2 months before the internal burning will be healed. But she thought that progress was as good as it could be.
She urged me to look ahead to a holiday away from home. Right now I'm planning to go to the National Education Computing Conference in San Antonio at the end of the month. She approved of that. I'm hopeful I'll feel confident about the trip when the time comes.
As always, thank you for your friendship.
Betsy
She urged me to look ahead to a holiday away from home. Right now I'm planning to go to the National Education Computing Conference in San Antonio at the end of the month. She approved of that. I'm hopeful I'll feel confident about the trip when the time comes.
As always, thank you for your friendship.
Betsy
Saturday, June 7, 2008
8 June 2008
It has been almost two weeks since I last wrote here. The chemo ended two weeks ago and I don't think it can be entirely out of my system because red wine still tastes pretty awful. The radiation was completed on the 28th. The last week and a half has been about dealing with the burns and trying to get my digestive system back to comfortable. It is going to take longer than I anticipated. The burn creme is very good and very expensive - 1.5 ounces for $38 - and not covered by insurance.
I enjoyed and was greatly comforted by friends and relatives who stayed with me during the hardest and probably most potentially dangerous parts of this illness. I'm alone most of the time now and it feels right, too. My energy level is still very low - I always think I'm going to have more than I do and I think I'm going to be feeling better than I do. I'm not lonely and company is always within a phone call or email.
I'll see the medical oncologist on Monday and she will schedule a time for me to see the surgeon who did the biopsy. He will assess the size of the tumor. The port for blood draws and which was used for the chemo pump will be coming out. I'll know more about what is next after that appointment which is probably at least a couple of weeks away.
The healing will continue slowly but surely. It is already easier to sit than it was and little by little the perineal area is healing. I'm not taking quite so many pain pills.
This much solitude is new to me and it's ok. I thought I'd have done more reading, more work, watched more movies, and maybe even have done some sorting in the garage! Live and learn!
Betsy
I enjoyed and was greatly comforted by friends and relatives who stayed with me during the hardest and probably most potentially dangerous parts of this illness. I'm alone most of the time now and it feels right, too. My energy level is still very low - I always think I'm going to have more than I do and I think I'm going to be feeling better than I do. I'm not lonely and company is always within a phone call or email.
I'll see the medical oncologist on Monday and she will schedule a time for me to see the surgeon who did the biopsy. He will assess the size of the tumor. The port for blood draws and which was used for the chemo pump will be coming out. I'll know more about what is next after that appointment which is probably at least a couple of weeks away.
The healing will continue slowly but surely. It is already easier to sit than it was and little by little the perineal area is healing. I'm not taking quite so many pain pills.
This much solitude is new to me and it's ok. I thought I'd have done more reading, more work, watched more movies, and maybe even have done some sorting in the garage! Live and learn!
Betsy
Friday, May 23, 2008
Memorial Day Weekend 2008
My sister-in-law has been here providing wonderful support - soups, teas, chores, and good conversation about everything from flowers to politics. And my daughter Liza arrived last night and is making a matzo ball soup for me. She is eating exclusively from the menu at the Frontier! We've got a handful of movies.
The radiologist is confident the treatment is going well. The "Boost" is different from the other treatments which were one blast on the top of my pelvis and the other underneath. For this one after lots of measuring and xes marking the spots is nine different blasts (not that I can feel or see the xrays). The machine is positioned in a starting point down to the right and blasts and then moves around a few degrees and repeats until after six moves it is right under me. Then after those seven it is repositioned to treat first the left and then the right groin. So it's nine all together. Very thorough. As the radiologist noted, you can only radiate an area once so she is making sure no existing cancer cell is left untreated. Although my pelvic area looks like a freshly boiled lobster, she says I'm doing really well and is pleased that I've taken good care of myself. I have some burns that are starting to peel but she says thanks to my wearing the kind of baggy, low hanging crotch kinds of trousers that are popular among way cool young men, I've saved myself a good deal of irritation.
After seeing the radiation team, I went to see the oncologist who urged me to move beyond tylenol and onto the oxycontin. "What Rush Limbaugh is hooked on?" Liza asked. The oncologist said yes but not to worry. "Your mother isn't going to be an addict". I hadn't realized how helpful it would be. It is a very happy pill and I'm enjoying feeling quite pain free. Next week after the radiation ends I can start an ointment which was developed in Switzerland and has no alcohol or steroids in it and which will help my skin to heal.
She also said to keep a sharp out for the possibility of another infection. She isn't predicting it but wants to be prepared: she is on call this weekend - I heard that as wonderful news. "We'll skip the ER step and get you admitted immediately." Take your temperature two or three times a day.
The nurse took the chemo pump out. And she said to be careful because the mouth sores are starting. Another opportunity for infection. The chemo side effects kick in 6 to 10 days post treatment.
But I feel hopeful. I'm glad to be off the chemo. I'm glad there is a three day respite before the last two radiation treatments. I'm loving my new best friend oxycontin. I think it will take me more time in June to get back to normal but I will definitely get there.
As always, thank you so much for your friendship and caring gestures. I'm grateful. I hope you are planning to stay and dry and warm this weekend! Here in NM it is raining and there is snow in the mountains.
Betsy
The radiologist is confident the treatment is going well. The "Boost" is different from the other treatments which were one blast on the top of my pelvis and the other underneath. For this one after lots of measuring and xes marking the spots is nine different blasts (not that I can feel or see the xrays). The machine is positioned in a starting point down to the right and blasts and then moves around a few degrees and repeats until after six moves it is right under me. Then after those seven it is repositioned to treat first the left and then the right groin. So it's nine all together. Very thorough. As the radiologist noted, you can only radiate an area once so she is making sure no existing cancer cell is left untreated. Although my pelvic area looks like a freshly boiled lobster, she says I'm doing really well and is pleased that I've taken good care of myself. I have some burns that are starting to peel but she says thanks to my wearing the kind of baggy, low hanging crotch kinds of trousers that are popular among way cool young men, I've saved myself a good deal of irritation.
After seeing the radiation team, I went to see the oncologist who urged me to move beyond tylenol and onto the oxycontin. "What Rush Limbaugh is hooked on?" Liza asked. The oncologist said yes but not to worry. "Your mother isn't going to be an addict". I hadn't realized how helpful it would be. It is a very happy pill and I'm enjoying feeling quite pain free. Next week after the radiation ends I can start an ointment which was developed in Switzerland and has no alcohol or steroids in it and which will help my skin to heal.
She also said to keep a sharp out for the possibility of another infection. She isn't predicting it but wants to be prepared: she is on call this weekend - I heard that as wonderful news. "We'll skip the ER step and get you admitted immediately." Take your temperature two or three times a day.
The nurse took the chemo pump out. And she said to be careful because the mouth sores are starting. Another opportunity for infection. The chemo side effects kick in 6 to 10 days post treatment.
But I feel hopeful. I'm glad to be off the chemo. I'm glad there is a three day respite before the last two radiation treatments. I'm loving my new best friend oxycontin. I think it will take me more time in June to get back to normal but I will definitely get there.
As always, thank you so much for your friendship and caring gestures. I'm grateful. I hope you are planning to stay and dry and warm this weekend! Here in NM it is raining and there is snow in the mountains.
Betsy
Tuesday, May 20, 2008
Good Days and a little bit about this Cancer 20 May
The last round of chemo began yesterday. It's the same format as the one Irene described in the early days: I carry the pump in a lightweight shoulder bag (the sort of thing you might carry a phone and your license and a few dollars for a night of dancing, for example). It's attached to a semi-permanent subcutaneous port which is attached to cable under my skin and linked to the jugular.
I started feeling well on Sunday after three dreary days. Sunday was beautiful. It was the second day of no radiation and I did some watering and house frau chores and actually got quite a lot of work done. It was a terrific day.
And I think the reason this new chemo course is going well is that I'm only getting 5FU and not the mitomycin, too. So there is little discomfort. Aches from the radiation and some digestive upset but NOTHING like other times.
When I was first diagnosed with this cancer I really couldn't bring myself to be straightforward about it. But now I can talk about it with anyone who wanders into my periphery. It is squamous cell anal cancer. It is very rare as cancers go - not unheard of but uncommon. The wonderful nurse at Lovelace who administers my weekly blood tests and does the infusions of saline and the chemo had never treated anyone before and she is a experienced longtime chemo nurse. She and I nipped into the bathroom so she could see the extent of the changes in my body and the amazing tan which may be useful if I decide I need a bikini waxing and don't want to be too pale!
To say that this cancer is a major invasion of one's "private parts" is a euphemistic description of what this treatment is like. But the radiation techs are gentle and respectful and they don't tattoo anymore - just lots of xes marking the spot and the xes connected with marking pen lines. I get radiated in increasingly shrinking areas tho the quantity of radiation stays the same. And it is still a blast in the pelvic area first on the bottom and then on the top.
The nurse asked me to write up some of the effects of the radiation like the feeling that the the urethra and bladder and other neighboring organs are shrinking along with the cancer. Maybe I'll do that. She says there is nothing she knew about to help nurses prepare patients. The radiation nurse had some info but it had not drifted over to oncology-hematology.
So Celia stayed here yesterday and we had a good day working and enjoying time together. She picked up my sister-in-law from Tucson at the airport this morning while I was at radiation. We are catching up on family stuff and talking about Africa where her son lives. Mostly we are talking about what we have read about Africa including novels and non-fiction. And my dear daughter comes on Thursday night and will here until Tuesday morning.
Friends continue to bring food and flowers and I continue to be appreciative of your thoughtfulness. But the truth is that mostly I'm thrilled to be more myself. Having energy, being able to complete a thought, being able to work (well, not full bore), not on the verge of tears feels miraculous.
Thank you all.
Betsy
I started feeling well on Sunday after three dreary days. Sunday was beautiful. It was the second day of no radiation and I did some watering and house frau chores and actually got quite a lot of work done. It was a terrific day.
And I think the reason this new chemo course is going well is that I'm only getting 5FU and not the mitomycin, too. So there is little discomfort. Aches from the radiation and some digestive upset but NOTHING like other times.
When I was first diagnosed with this cancer I really couldn't bring myself to be straightforward about it. But now I can talk about it with anyone who wanders into my periphery. It is squamous cell anal cancer. It is very rare as cancers go - not unheard of but uncommon. The wonderful nurse at Lovelace who administers my weekly blood tests and does the infusions of saline and the chemo had never treated anyone before and she is a experienced longtime chemo nurse. She and I nipped into the bathroom so she could see the extent of the changes in my body and the amazing tan which may be useful if I decide I need a bikini waxing and don't want to be too pale!
To say that this cancer is a major invasion of one's "private parts" is a euphemistic description of what this treatment is like. But the radiation techs are gentle and respectful and they don't tattoo anymore - just lots of xes marking the spot and the xes connected with marking pen lines. I get radiated in increasingly shrinking areas tho the quantity of radiation stays the same. And it is still a blast in the pelvic area first on the bottom and then on the top.
The nurse asked me to write up some of the effects of the radiation like the feeling that the the urethra and bladder and other neighboring organs are shrinking along with the cancer. Maybe I'll do that. She says there is nothing she knew about to help nurses prepare patients. The radiation nurse had some info but it had not drifted over to oncology-hematology.
So Celia stayed here yesterday and we had a good day working and enjoying time together. She picked up my sister-in-law from Tucson at the airport this morning while I was at radiation. We are catching up on family stuff and talking about Africa where her son lives. Mostly we are talking about what we have read about Africa including novels and non-fiction. And my dear daughter comes on Thursday night and will here until Tuesday morning.
Friends continue to bring food and flowers and I continue to be appreciative of your thoughtfulness. But the truth is that mostly I'm thrilled to be more myself. Having energy, being able to complete a thought, being able to work (well, not full bore), not on the verge of tears feels miraculous.
Thank you all.
Betsy
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