I can only laugh about my day and recognize that I must not be in very bad shape since I survived it. I was supposed to meet the vet at the barn where Hannah winters her camp horse, Dennis, for spring shots and a lameness evaluation. Because the world has gone insane with swine flu and, hence, my work life is similarly insane I had to go straight to the barn from work. No big deal. We've been dry for days here so it shouldn't have been a problem. I sat in my car, listening to an audio book and watching the horses graze in the pasture in front of me - a bucolic Connecticut scene if ever there was one. When I had been there for 30 minutes I called the vet's answering service to confirm that he was coming. By the time I got off the phone he was pulling into the barn and lo!, the horses had disappeared. I grabbed a halter and went off in search of them. This took me to the back of the pasture, or "the swamp," where I skipped from stone to stone in my capris and nice navy flats (received as a Mother's Day gift from Hannah last year) and reached the horses. I attempted to put the halter on Dennis, but couldn't get it fastened. I led him off that way. I couldn't go back the way I had come so headed for the little stream, hoping to find stones to step across. Instead, I sunk my foot into the muck, Dennis pulled back, the halter came flying off and he ran back to the herd as I went hands first into the muck at the base of the stream. Both shoes came off - one buried for all eternity somewhere my searching hand couldn't find it. I slogged across the stream and then the pasture barefoot and got a hug and a promise from the vet to come back on Monday and try again. If I could accomplish that stupidity without breaking my hip, I don't think I need the cane any more.
Yesterday I met with the radiation oncologist and had my first treatment. He's going to deliver the treatment in 5 sessions, which will not disrupt my schedule in the least. Two down and three to go. I'm once again covered with Xs to mark the spots and lots of little pieces of circular tape that I'm not supposed to disturb until after the last treatment on Monday. Fun times but nothing that hinders life in the least.
I've emailed the oncologist at Dana-Farber to see where we stand on genetic testing of the tumor. I'm not going to let anyone do anything to me as far as systemic treatment until after Emma's graduation and until I don't feel pyucky and puny from the Cisplatin/Taxotere any more but I know my oncologist will be anxious so I'll try to get a time estimate from Dana-Farber.
So other than swine flu insanity, a confounding horse and persistent side effects from the last chemotherapy everything is going pretty well. The daffodils are on the wane and the tulips are starting to bloom. The trees are all wearing their spring wardrobe and there's the first sign of dogwood getting ready to burst forth. I'm excited for mine to bloom - a pink one that was a gift from Philip last year.
I leave on May 15th for Emma's graduation. A friend is visiting mid-June and my mother is going to try to make it back for my birthday on June 20th. I'm going to wait until I know for sure what my next steps are and see if I can't get to feeling a little better before I make any more travel plans (well, except knowing that I'll head over to Long Island with Hannah and Philip at some point after they get out of school to impose on my aunt and uncle).
I hope spring is putting a little bounce in everyone's step and that you are all enjoying beautiful spring weather and blooms. Every once in a while someone should remind me that a) I'm not a teenager and b) I really should have developed a little more sense by this point in my life.
Lisa
Wednesday, April 29, 2009
Saturday, April 25, 2009
What's Up With the Doc 53? - No Surgery!
Just a quickie to let everyone know that the orthopedic oncologist feels that the hip metastasis is in a part of the joint (acetabular roof) that actually is not really at risk for fracture and so he thinks it doesn't require surgery. I'm off to see the radiation oncologist on Tuesday to set up radiation therapy to keep it from growing any. This is great news since I won't have to miss any work and won't have to recover from surgery so I'm celebrating this weekend.
Lisa
Lisa
Wednesday, April 22, 2009
What's Up With the Doc 52? - Onward and Upward
Well, I saw my oncologist yesterday and there wouldn't have been an argument, even if I'd been looking for it. Granted, I called him on Monday to catch him up on last week's goings on and get permission to change my appointment time to later in the day, so we'd already worked everything out. Yale Orthopedic Oncology had even contacted me and made an appointment for this Friday before my apointment. All my counts are fine so it's just the dregs of the last cisplatin/taxotere dose that are leaving me feeling as though someone hooked a giant vacuum cleaner up to me and sucked every bit of energy out. Hopefully that and the residual nausea will clear up over the next few days.
I spoke to the pathologist at my hospital (where the second biopsy was done) on Monday and he assured me that a) he'd already talked to Dana-Farber; b) they do, in fact, have the tissue samples and c) he kept a little in reserve just in case there was a SNAFU. Hopefully we'll be hearing something from Dana-Farber about the genetic testing of the tumor in the not too distant future.
I really don't know what to expect about my hip at this point. I'll see the orthopedic oncologist on Friday. He'll probably want an MRI. If he decides that hip arthroplasty (replacement) is the best treatment for this thing he'll have to talk to my oncologist to make sure that I have a long enough life expectancy to make undertaking the surgery worthwhile. Both the potential instability of the lesion and the need to have and recover from the surgery before any further treatment for the cancer can be undertaken argue for the quickest possible decision about what course to follow. If we go with the surgery I'm actually going to have to take some time off work.
So that's what's up with me and my cancer right now. My treatment hiatus officially started yesterday with end date to be determined based on potential surgery/recovery and the genetic testing at Dana-Farber.
NYTimes.com Health launched a new lung cancer feature today which you can find here:
http://www.nytimes.com/interactive/2009/04/23/health/healthguide/TE_LUNGCANCER.html?ref=health
You can see and hear me, see Emma and one of our lazy cats. Oh, and five other lung cancer patients, as well.
Lisa
I spoke to the pathologist at my hospital (where the second biopsy was done) on Monday and he assured me that a) he'd already talked to Dana-Farber; b) they do, in fact, have the tissue samples and c) he kept a little in reserve just in case there was a SNAFU. Hopefully we'll be hearing something from Dana-Farber about the genetic testing of the tumor in the not too distant future.
I really don't know what to expect about my hip at this point. I'll see the orthopedic oncologist on Friday. He'll probably want an MRI. If he decides that hip arthroplasty (replacement) is the best treatment for this thing he'll have to talk to my oncologist to make sure that I have a long enough life expectancy to make undertaking the surgery worthwhile. Both the potential instability of the lesion and the need to have and recover from the surgery before any further treatment for the cancer can be undertaken argue for the quickest possible decision about what course to follow. If we go with the surgery I'm actually going to have to take some time off work.
So that's what's up with me and my cancer right now. My treatment hiatus officially started yesterday with end date to be determined based on potential surgery/recovery and the genetic testing at Dana-Farber.
NYTimes.com Health launched a new lung cancer feature today which you can find here:
http://www.nytimes.com/interactive/2009/04/23/health/healthguide/TE_LUNGCANCER.html?ref=health
You can see and hear me, see Emma and one of our lazy cats. Oh, and five other lung cancer patients, as well.
Lisa
Saturday, April 18, 2009
What's Up With the Doc 51? - Forecast Partly Cloudy with a Touch of Orthopedics
Just remember that partly cloudy means mostly sunny. Our visit to Dana-Farber Tuesday was really a wonderful thing. The thoracic oncologist agreed that it is time to stop cytotoxic chemotherapy and that it is not likely to be a useful treatment modality in the future for me. He also reminded us that, while I have this cancer in a lot of places, I don't have a lot of it and none in any life-threatening locations (near major vessels, compromising my breathing, etc.) and that the biology of the cancer is just different in nonsmokers than in smokers. It tends to be much more indolent (I love that word) and that he wouldn't expect me to really feel any systemic effects from this cancer next week, next month or for MANY MONTHS. He feels they can be leisurely in evaluating my tissue for those oddball genetic mutations (which is good, because they don't exactly know where that tissue is right now) and if I've got one of them then we can go the clinical trial route. He admitted that treatment options are more difficult if I don't have one of those mutations, but pointed out that there are still a couple of small-molecule inhibitors of the VEGF receptor tyrosine kinase, such as sunitinib and sorafenib, that have shown efficacy in my type of cancer and those would be reasonable options to consider.
So I get a big old break from systemic treatment for the cancer after 13 continuous months of feeling like crap because of whatever treatment I'm on and I am really, really looking forward to feeling good for a while.
Which takes me to the touch of orthopedics. When my left hip metastasis first showed up early last month my orthopedic surgeon was adamant that I needed to do SOMETHING about it because it was structurally threatening and I would be in a world of hurt if I fractured through it. After much cross consultation we decided to go forward with the chemotherapy, hoping that that would shrink the mass and make it less threatening. Tuesday's scan showed that that did not happen and the oncologist Tuesday was even more adamant than the orthopedic surgeon had been that I need to do something about the hip right now, BEFORE it fractures. While radiation therapy would be an option if pain were the issue, it probably won't provide the structural stability necessary to prevent fracture and allow continued normal activity. So I'm likely to wind up with a partial hip replacement in the very near future. No fun, but the technology is very good these days and people recover very quickly so we probably just need to get on with it.
I consider all of this to be very positive for me and my family and I am so grateful for all the good thoughts and prayers that you have all offered on my behalf. A very good friend of mine is very seriously ill in the ICU right now and if you could divert some thoughts and prayers in Ann's direction for a while I would very much appreciate it.
Good thoughts also to Hannah's volleyball team and I'll let you all know when I know something more concrete on the orthopedic side.
Lisa
So I get a big old break from systemic treatment for the cancer after 13 continuous months of feeling like crap because of whatever treatment I'm on and I am really, really looking forward to feeling good for a while.
Which takes me to the touch of orthopedics. When my left hip metastasis first showed up early last month my orthopedic surgeon was adamant that I needed to do SOMETHING about it because it was structurally threatening and I would be in a world of hurt if I fractured through it. After much cross consultation we decided to go forward with the chemotherapy, hoping that that would shrink the mass and make it less threatening. Tuesday's scan showed that that did not happen and the oncologist Tuesday was even more adamant than the orthopedic surgeon had been that I need to do something about the hip right now, BEFORE it fractures. While radiation therapy would be an option if pain were the issue, it probably won't provide the structural stability necessary to prevent fracture and allow continued normal activity. So I'm likely to wind up with a partial hip replacement in the very near future. No fun, but the technology is very good these days and people recover very quickly so we probably just need to get on with it.
I consider all of this to be very positive for me and my family and I am so grateful for all the good thoughts and prayers that you have all offered on my behalf. A very good friend of mine is very seriously ill in the ICU right now and if you could divert some thoughts and prayers in Ann's direction for a while I would very much appreciate it.
Good thoughts also to Hannah's volleyball team and I'll let you all know when I know something more concrete on the orthopedic side.
Lisa
Wednesday, April 15, 2009
What's Up With the Doc 50? - On to the Next Phase
Where to start? I guess where I left off is as good as anywhere. Last Wednesday afternoon I started feeling very punk again. No fever, just exhausted and nauseated. It was too much effort to sit at the computer and post or even pick up my quilt. Friday I went to the doctor for counts (fine) and Zometa late in the morning. By 6 pm my fever was once again 102.1 and I was back to just flat out awful. Being the holiday weekend (and my oncologist was out Friday and won't be back in the office until next Monday) I decided to wait and see how I felt Saturday morning before deciding what to do next. Saturday morning my temp was 100.3 and I still felt awful so I called my Albuquerque oncologist friend. He suggested that I take some dexamethasone I have lying around from radiation therapy days. I did and was feeling much better within 3 hours, which I really didn't think steroids could do, but yay!
So I made our lamb cake for Easter dinner and dyed eggs with Hannah and Philip. Sunday morning we had our egg hunt and Hannah and Philip had eggs and candy for breakfast and lunch. I made rack of lamb for dinner and that was delightful. I called Aof on Sunday morning to let him know how much better I was feeling and we agreed that I wouldn't take any more scheduled dexamethasone - just see how I feel and act accordingly. So, of course, I woke up feeling stinky on Monday and took some before Hannah and I headed North for a college visit. That went well and I came home and went to bed. Yesterday I worked before my scan, had the scan and went home.
The scan. Not good, to put it in as few words as possible. Of course, it's never that simple. The #@(%&&*# who read it apparently can't commit himself to a darned thing because the very short body of the report is full of mays and perhaps and such nonsense but the conclusion is clear and one with which, after looking at the scan, I agree completely. Worsening bony disease. Worsening adrenal disease. He thought the big lesion in the liver might be a little better. It's not. He just measured differently than the last doctor. My two favorite radiologists, like my oncologist, are not available because it's April school break week in CT so EVERYONE is off somewhere with their kids.
My oncologist will read the report and say that he considers it to be a "mixed bag" and not clear enough to discontinue treatment. I understand his position - this is really pretty much the end of the line for me unless I have a rare mutation that qualifies me for a clinical study so it's a decision between treatment and no treatment, not one treatment and another. But it's really nasty treatment that leaves me with no real quality of life and it's just not worth it unless it is demonstrably controlling disease, which it is not. So we will argue on Tuesday.
The Dana-Farber radiologists will look at the scans and weigh in on their own, but probably not by Tuesday. I'll drop a disk off at my oncologist's office so he can let the Yale boys take a look, but I'm guessing that will be a limbo opinion because that's what he wants to hear. When one of my trusted radiologists is back I will go over the scan with him/her to make sure that at least WE are in agreement that the scan shows progressive disease.
Bah! At least the Zometa is helping with the already not too bad bone pain I was having. Really, in medical school they taught us that bony metastases were the worst pain we'd ever see to treat. That's how we learned to treat severe pain. I have metastases in my C4, C5, T11, T12, L1 and L4 vertebral bodies, my sacrum and two in my pelvis and pain is just not that big an issue for me. Hallelujah for that.
I won't know for sure until I've heard the Dana-Farber opinion and seen my oncologist face-to-face on Tuesday, but I think this is THAT moment, the point at which I say no more treatment, just make me feel as good as you possibly can for as long as I've got. As always, there's no predicting how long that might be and I don't want to speculate, just shorten my window to 6-8 weeks at a time.
As for how I am today, that would be nauseated, tired and full of uncertainty about the future.
So I made our lamb cake for Easter dinner and dyed eggs with Hannah and Philip. Sunday morning we had our egg hunt and Hannah and Philip had eggs and candy for breakfast and lunch. I made rack of lamb for dinner and that was delightful. I called Aof on Sunday morning to let him know how much better I was feeling and we agreed that I wouldn't take any more scheduled dexamethasone - just see how I feel and act accordingly. So, of course, I woke up feeling stinky on Monday and took some before Hannah and I headed North for a college visit. That went well and I came home and went to bed. Yesterday I worked before my scan, had the scan and went home.
The scan. Not good, to put it in as few words as possible. Of course, it's never that simple. The #@(%&&*# who read it apparently can't commit himself to a darned thing because the very short body of the report is full of mays and perhaps and such nonsense but the conclusion is clear and one with which, after looking at the scan, I agree completely. Worsening bony disease. Worsening adrenal disease. He thought the big lesion in the liver might be a little better. It's not. He just measured differently than the last doctor. My two favorite radiologists, like my oncologist, are not available because it's April school break week in CT so EVERYONE is off somewhere with their kids.
My oncologist will read the report and say that he considers it to be a "mixed bag" and not clear enough to discontinue treatment. I understand his position - this is really pretty much the end of the line for me unless I have a rare mutation that qualifies me for a clinical study so it's a decision between treatment and no treatment, not one treatment and another. But it's really nasty treatment that leaves me with no real quality of life and it's just not worth it unless it is demonstrably controlling disease, which it is not. So we will argue on Tuesday.
The Dana-Farber radiologists will look at the scans and weigh in on their own, but probably not by Tuesday. I'll drop a disk off at my oncologist's office so he can let the Yale boys take a look, but I'm guessing that will be a limbo opinion because that's what he wants to hear. When one of my trusted radiologists is back I will go over the scan with him/her to make sure that at least WE are in agreement that the scan shows progressive disease.
Bah! At least the Zometa is helping with the already not too bad bone pain I was having. Really, in medical school they taught us that bony metastases were the worst pain we'd ever see to treat. That's how we learned to treat severe pain. I have metastases in my C4, C5, T11, T12, L1 and L4 vertebral bodies, my sacrum and two in my pelvis and pain is just not that big an issue for me. Hallelujah for that.
I won't know for sure until I've heard the Dana-Farber opinion and seen my oncologist face-to-face on Tuesday, but I think this is THAT moment, the point at which I say no more treatment, just make me feel as good as you possibly can for as long as I've got. As always, there's no predicting how long that might be and I don't want to speculate, just shorten my window to 6-8 weeks at a time.
As for how I am today, that would be nauseated, tired and full of uncertainty about the future.
Tuesday, April 7, 2009
What's Up With the Doc 49? - Hanging In There
That's my usual response these days when people ask how I'm doing. I'm nauseated, weak and tired from chemo but still here and functioning so it seems like the most appropriate thing to say. I don't really have any big news this week. If I get the day 9 fever that will be tomorrow so I started my Aleve today to try and prevent that. The oncologist gave me Ativan for the nausea and that has been surprisingly helpful. I've still lost 4 pounds and nothing tastes good to me, but I don't feel as awful as I did last cycle. One thing I'm almost hesitant to say is that my neck and hip really haven't been bothering me much for the last few days. I don't know what that means but I'll enjoy it while I can.
Baseball season is here! I'm thrilled to let the trash talking, hope and heartbreak begin for another season. I'm a Cubs fan, if you didn't know, and I was glad to see them win their opener in Houston yesterday. The daffodils have started blooming and the hyacinths and tulips are all up! And I'm here to see it!! My mother and Faith will be here to see it as well in just over two weeks.
Next week is very busy - Hannah and Philip are out of school for April break. Hannah and I are going to try to squeeze at least one and maybe two college visits in next week. We are being challenged by her new job(!) and my scan on Tuesday. Thursday she leaves with her dad for Baltimore where there will be yet another college visit before the volleyball tournament begins and Robert and I head for Dana-Farber.
Emma graduates May 16th and I'm heading out for the festivities. I can't decide whether I hope I'm immediately post-chemo (good scan results next week but feeling awful) or not (bad scan results but feeling good). I guess what will be will be.
That's the end of my planning until I find out what next week brings. Emma is coming to CT for the summer and Hannah and Philip don't get out of school until June 24th! Robert and I will probably try to make it to Ian's white coat ceremony wherever and whenever that turns out to be.
Thanks to all of you again and again for your thoughts and prayers. Every one of them does me a world of good.
Baseball season is here! I'm thrilled to let the trash talking, hope and heartbreak begin for another season. I'm a Cubs fan, if you didn't know, and I was glad to see them win their opener in Houston yesterday. The daffodils have started blooming and the hyacinths and tulips are all up! And I'm here to see it!! My mother and Faith will be here to see it as well in just over two weeks.
Next week is very busy - Hannah and Philip are out of school for April break. Hannah and I are going to try to squeeze at least one and maybe two college visits in next week. We are being challenged by her new job(!) and my scan on Tuesday. Thursday she leaves with her dad for Baltimore where there will be yet another college visit before the volleyball tournament begins and Robert and I head for Dana-Farber.
Emma graduates May 16th and I'm heading out for the festivities. I can't decide whether I hope I'm immediately post-chemo (good scan results next week but feeling awful) or not (bad scan results but feeling good). I guess what will be will be.
That's the end of my planning until I find out what next week brings. Emma is coming to CT for the summer and Hannah and Philip don't get out of school until June 24th! Robert and I will probably try to make it to Ian's white coat ceremony wherever and whenever that turns out to be.
Thanks to all of you again and again for your thoughts and prayers. Every one of them does me a world of good.
Wednesday, April 1, 2009
What's Up With the Doc 48? - Still Alive after Cisplatin/Taxotere #2
I had my second cycle of cisplatin and taxotere yesterday and I'm hanging in there today. I'm trying to be more aggressive in treating the nausea and pushing fluids hard. Appetite stinks but I'm able to force normal quantities of normal food down. I'm clinical today, tomorrow, Saturday and Sunday. Administrative Friday and off Monday. If the fever follows its usual course I'd be expecting it next Wednesday so I'll start full dose Aleve on Tuesday to try to head it off at the pass. Next blood count and Zometa are Friday the 10th. Next scan Tuesday the 14th. Dana-Farber Thursday the 16th.
Last week was interesting all around. I went back for my second transfusion of red blood cells on Wednesday and there was a fire in the Ambulatory Medical Clinic! We all had to be evacuated to the conference room. I had my biopsy on Friday and that was a breeze. He thinks he got plenty of good tissue - we'll see what the Dana-Farber pathologists have to say about that.
Chris and Sheri got in Thursday afternoon and we started the great seafood fest with dinner at the Mooring. Friday we had Robert's famous barbecued brisket for dinner and then Hannah, Chris, Sheri and I headed out for the Long Island volleyball tournament. Saturday was a blast - Hannah's team went undefeated and she executed two great slide maneuvers in the last match of the day. The team went to Dave and Buster's for dinner and games and Chris and Sheri and I met Bonnie and Dick for more seafood. Sunday the team made it to the semifinals of the gold bracket but lost to a strong Academy team, tying for 3rd in the tournament. We headed home, picked Robert up and finished up the seafood love-in at the Chowder Pot in Branford. It was a wonderful visit and I felt great all weekend with my little 4 day chemo extension to get me back on a Tuesday chemo schedule.
So at the moment, all is well with me. Think strong thoughts for me to make it through this post-chemo period with as little misery as possible.
Last week was interesting all around. I went back for my second transfusion of red blood cells on Wednesday and there was a fire in the Ambulatory Medical Clinic! We all had to be evacuated to the conference room. I had my biopsy on Friday and that was a breeze. He thinks he got plenty of good tissue - we'll see what the Dana-Farber pathologists have to say about that.
Chris and Sheri got in Thursday afternoon and we started the great seafood fest with dinner at the Mooring. Friday we had Robert's famous barbecued brisket for dinner and then Hannah, Chris, Sheri and I headed out for the Long Island volleyball tournament. Saturday was a blast - Hannah's team went undefeated and she executed two great slide maneuvers in the last match of the day. The team went to Dave and Buster's for dinner and games and Chris and Sheri and I met Bonnie and Dick for more seafood. Sunday the team made it to the semifinals of the gold bracket but lost to a strong Academy team, tying for 3rd in the tournament. We headed home, picked Robert up and finished up the seafood love-in at the Chowder Pot in Branford. It was a wonderful visit and I felt great all weekend with my little 4 day chemo extension to get me back on a Tuesday chemo schedule.
So at the moment, all is well with me. Think strong thoughts for me to make it through this post-chemo period with as little misery as possible.
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