Last week I did my first professional travel since Chemo - 2 days in Washington DC attending a meeting (wed) and chairing a meeting (thurs). I am pleased to report that all went well. My energy and concentration were adequate for both tasks, although on Wed I did take an hour long nap between the meeting and dinner, and on Thurs after the meeting ended an hour earlier than scheduled, by the time it had been scheduled to end I was in my hotel room in my PJs sacked out on the bed watching TV. I did not leave that room again until I checked out the next morning - even ordered room service in for dinner.
But it went well, and I was able to visit with several friends in the DC area before returning to Atlanta Sunday night.
Other evidence of progress:
(1) my blood cell counts have been high and stable enough that I was able to skip my lab test the previous week. Hopefully soon the weekly testing will no longer be necessary.
(2) my head is mostly covered by peach fuzz - all areas except the very top. Clear evidence that however slowly my hair is starting to return. YEAH!
My 3rd dose of Avastin, the investigational drug that I get every 3 weeks for nearly a year after finishing the standard chemotherapy on April 12, will be 2 weeks from today. In the absence of really major events, I probably will not update this blog more frequently than at the time of each dose of Avastin. In other words, every 3 weeks starting 2 weeks from today.
Again thank you for your support.
Monday, May 24, 2010
Saturday, May 15, 2010
energy up, fuzz returning
This is the first week I have not had to return on Thursday for laboratory testing. My counts had been stable enough for the previous 2 weeks that they decided to skip a week. But as a result I do have to go in for lab testing Monday.
This weekend high school friend Ginny Walker Middleton picked me up and we drove to Nashville to watch other high school friend Elaine Brooks Harwood be awarded her DNP (Doctor of Nursing Practice) degree along with the rest of the very first class of DNP graduates at Vanderbilt. Very exciting and also another experiment for me to learn how I held up. Surprisingly well - which is good because next week I have my first business travel since surgery to DC for 2 days, afterwhich I will stay with friends over the weekend. Hopefully my energy will hold up.
I am encouraged enough that likely I will try to go back to work full time (5 instead of 3 days a week) starting June 1.
Although I confess that when Ginny dropped me back at my house today I immediately plopped into the recliner and began to doze. But I notice that the shows I had begun watching full time when I was on full time leave and finishing chemo are beginning to bore me now. Probably not unrelated to the fact that my brain suddenly began to seem much clearer about a week ago. It does not require quite as much effort to concentrate these days.
And lastly, while you have to look very carefully to notice it, I believe a tiny fuzz of hair is beginning to return around the lower rim of my skull. Not much to write home about - but a beginning hopefully to soon be followed by larger hairier things.
This weekend high school friend Ginny Walker Middleton picked me up and we drove to Nashville to watch other high school friend Elaine Brooks Harwood be awarded her DNP (Doctor of Nursing Practice) degree along with the rest of the very first class of DNP graduates at Vanderbilt. Very exciting and also another experiment for me to learn how I held up. Surprisingly well - which is good because next week I have my first business travel since surgery to DC for 2 days, afterwhich I will stay with friends over the weekend. Hopefully my energy will hold up.
I am encouraged enough that likely I will try to go back to work full time (5 instead of 3 days a week) starting June 1.
Although I confess that when Ginny dropped me back at my house today I immediately plopped into the recliner and began to doze. But I notice that the shows I had begun watching full time when I was on full time leave and finishing chemo are beginning to bore me now. Probably not unrelated to the fact that my brain suddenly began to seem much clearer about a week ago. It does not require quite as much effort to concentrate these days.
And lastly, while you have to look very carefully to notice it, I believe a tiny fuzz of hair is beginning to return around the lower rim of my skull. Not much to write home about - but a beginning hopefully to soon be followed by larger hairier things.
Thursday, May 6, 2010
Blood counts stabilizing, energy up
Just a brief update. Thursdays are the day I am on medical leave to have labs tested until my blood counts stabelize. Until today I have gone to Gainesville, come home, collapsed in the recliner and sat in front of the TV for the rest of Thursday and Friday, and pretty much dragged through the weekend.
Today I had energy to spare after my labs were collected. Elizabeth, my chemo nurse, printed out my labs since I finished standard chemo and sure enough the hemoglobin (red blood cell count) had gone down, although not quite far enough to require a transfusion, but then come back up again. Last Thursday it was 10.4 - which is not normal but is about the highest my hemoglobins would get immediately after a transfusion. And my white cell count (the ones that fight infection) also had gone down but last week were about 4,000. 5,000 is the bottom limit of normal. So that was all good and is reflected in my energy and endurance levels.
Since I will continue to get the investigational drug Avastin the first Monday of each 3 week cycle for about another year, this coming Monday I will have to take medical leave to recieve Avastin. I will have blood labs drawn then as well. But if the blood counts are as good today and next Monday as they were last Thursday, possibly I will no longer be required to take every Thursday off for laboratory testing! That would be terrrific.
Whether I will still need to take Thursdays and Fridays off just because of general energy levels remains to be seen. But based on improvement to date, I am hoping to be back at work 5 days a week by the beginning of June. This week is the first week that I have come home from labs and actually been able to do chores at home, making it seem likely that within a couple of weeks I will be able to work full time. At least I hope so.
Again, thanks for your support.
Today I had energy to spare after my labs were collected. Elizabeth, my chemo nurse, printed out my labs since I finished standard chemo and sure enough the hemoglobin (red blood cell count) had gone down, although not quite far enough to require a transfusion, but then come back up again. Last Thursday it was 10.4 - which is not normal but is about the highest my hemoglobins would get immediately after a transfusion. And my white cell count (the ones that fight infection) also had gone down but last week were about 4,000. 5,000 is the bottom limit of normal. So that was all good and is reflected in my energy and endurance levels.
Since I will continue to get the investigational drug Avastin the first Monday of each 3 week cycle for about another year, this coming Monday I will have to take medical leave to recieve Avastin. I will have blood labs drawn then as well. But if the blood counts are as good today and next Monday as they were last Thursday, possibly I will no longer be required to take every Thursday off for laboratory testing! That would be terrrific.
Whether I will still need to take Thursdays and Fridays off just because of general energy levels remains to be seen. But based on improvement to date, I am hoping to be back at work 5 days a week by the beginning of June. This week is the first week that I have come home from labs and actually been able to do chores at home, making it seem likely that within a couple of weeks I will be able to work full time. At least I hope so.
Again, thanks for your support.
Sunday, May 2, 2010
Sorry I have been so slow to update this blog. The last cycle of chemo therapy (last 3 weeks) actually took a bigger toll than I anticipated - probably disproportionate to the previous ones. Additionally, my expectations for recovery after finishing the standard chemo exceeded the reality of the pace of improvement. The combination resulted in me probably overdoing it and wearing out before i got around to updating the blog. But several people have contacted me a bit concerned about the absence of information, so tonight I am determined to get an update on board. Plus I am so far behind I can't really let it go much longer and expect to ever catch up.
As I said above, after the one week deferral of chemo due to low platelet counts, I started the last 3 week long cycle. The impact was stronger than I anticipated, possibly in part because I had begun to feel so much better during the week free of chemo. Whatever - it was really exhuasting and I found my energy much lower than before. At the same time, the anticipation of an end to the standard chemo ironically made it harder to tolerate. On the one hand, having done very well spending much of several months in isolation (with the exception of the dogs who are not so good at conversation) I suddenly found myself very impatient with sitting home alone and very eager for company. On the other hand, having gotten immensely good at living strictily in the moment, with the end of chemo in sight I suddenly was again focusing on the future - what I needed to catch up on at home and at work, the need to seek a more permenent position within CDC, whatever chores and responsibilties that had been deferred for the many months of chemo and now seemed imminent. The combination was really quite distressing - made somewhat easier that I had been warned to expect this.
Fortunately for me my sister in law Dore (Davis's wife) came from Dallas to visit for the last weekend of chemo. In addition to driving me for the last dose of standard chemo on Monday before returning to Dallas on Tuesday, on Sat and Sunday she helped me problem solve on several issue, most urgent the weeds growing rapidly and high in my front yard. This may seem trivial but it was causing me much distress, partly because the stage of rapid growth the prior year had corresponded to the period when I was working 80 + hour weeks on flu response and my usual yard guy was out of town or otherwise not responding to my phone messages. As a result my neglect of the yard led to some unindentified person in my neighborhood leaving a snippy anonymous message in my mail box telling me how much my neighbors would appreciate it if I would just mow my yard. I was aware that my neighbors were unlikely to be any happier if I failed to address the weed issues this year again.
But Dore was terrific. First she suggested a weed wacker since I no longer have a functioning lawn mower. We bought the week wacker, which was a good idea for the future. And we have it partially assembled. The last few steps need stronger hands so I am waiting for an opportunity to exploit a male relative, friend or neighbor.
But meanwhile after we had the weed wacker partially assembled Dore went out and decided that the weeds were easily coming up by the roots and that was better approach. So she spent most of Sunday and Monday afternoons actually weeding the whole patch by hand. She did a terrific job but I felt kind of bad about it because it seemed above and beyond the call of duty. But it was terrific and when we got the weeds mostly out (for “we” read “she”) she tells me the St Augustine is coming back, but could benefit from having some of the heavy thatch removed. She seems to know a lot more about this than I do.
Dore insisted that she was actually enjoying the weeding, talking to neighbors who went by and listening to the birds. Possibly it was true the first afternoon, but I think she was just being nice the second one. Either way I am feeling a bit guilty, but extremely grateful.
Either way, the lawn improved, I now have a tool (needing only a couple of things tightened by stronger hands than mine) for when future such problems arise. And I finished my last standard chemo treatment that Monday April 12, an event Dore and I celebrated by chowing down on take out Lebanese food and a gigantic chocolate cup cake.
On Tuesday April 13 she went home. The dogs wandered restlessly sniffing at things and occasionally barking at me for no particular reason. They insisted on going out and back in multiple times the night after she left, and wandered over to sniff at the futon couch that served as her bed en route inside and outside. Occasionally for no particular reason that I could identify Balsam (the hound) would howl at me balefully. I think they were looking for Dore. Explaining that she had to go home because her husband and personal dogs were needing her does not seem to satisfy them. Fortunately with time they adjusted.
Meanwhile, the Friday after Dore left (and after my last standard chemo dose) I was again called and ordered to report for type and cross (blood work necessary to arrange a transfusion) followed by another blood transfusion on Saturday. I had hoped I had already had my last transfusion, but did feel a bit less guilty about letting Dore do all the yard work while I napped once I knew my hemoglobin was again below 8.
The following MOnday I got the first dose of the investigational drug Avastin alone (which I will take every 3 weeks for nearly another year) and started back to work in the afternoon. Despite my intention to work full time, I discovered that if I got in before 10 AM, worked a 7-8 hour day, all I could manage after that was to nap in my recliner until bed time, then transfer sleeping locations. Thursday I was on medical leave to get labs, and Friday I made it in about noon and back home about 4. A bit discouraging since the combination of being off chemo and knowing I had been freshly transfused (a situation that normally leads to a large increase in energy and endurace) indicated I was at a peak of energy...
Based on that experience, for now we have set up a schedule where I work 3 days a week (Mon - Wed) and am on medical leave Thursday and Fridays. For now that is working. The second week I managed to stay awake between the time I returned home and went to bed, which I consider a victory. This week (the one that starts tomorrow) I intend to try to walk a little bit in the evenings. That may be deferred a bit because in addition to fatigue the neuropathy increased during the last cycle. That results in numbness and tingling in my hands and feet, but also affects balance and other things. Time will tell. So in summary the recovery will obviously be slower than I would like, but I am seeing steady if small progress week by week,
Last Sunday I have a visit from cousins Ed and Clara Chapman from CT. They stopped by en route back to CT from visiting thier daughter and son in law in western NC, and stayed long enough to take me out for Dim Sum and help put away my Christmas decorations. Amazing how much more roomy the house looks when I remove these and the massive display of all greeting cards I had received over the coursse of chemo (Thanksgiving, Birthday, Christemas, New YEars, Easter and Get Well cards had grown to quite a large population).
And last week Bruce (the yard guy) returned to town and mowed my yard - picking up where Dore left off.
So for now things are good. the Avastin is not supposed to affect energy, bone marrow, or hair growth, leading me to optimistically anticipate hair beginning to grow back the week after I took my last chemo and planning to return to swimming at the gym a week or 2 later. But I am adjusting to a more realistic view (my hair probably won't begin to grow back for another month or so and I can expect to be recuperating physically all the way through next December). I expect to continue going on Thursdays for lab studies until my blood counts return to normal, which probably will take at least a month after the last standard chemo (through late May). Elizabeth (my chemo nurse) tells me that she has instructed the office to check with her before calling me in for any more transfusions. She wants to let my counts drop to lower levels if necessary to give the bone marrow to begin its own transfusion. I am hoping the counts don't get that low again, since I know from experience that low red blood cells have a marked impact on my ability to get anything done, other than napping.
Now that Standard chemo is finished and, unexpectedly but not surprisingly if I had thought about it, I am using up all my energy trying to return as fast as possible to normal activity levels, I will probably update this blog less frequently. I will try to update at least every 3 week cycle of avastin for the time being. I will also update if there are any major changes in status. So you don't have to worry that something has gone wrong if I do not update. If anything goes wrong I will be sure to update.
No news will be good news. In the absence of update - assume all is well.
And thanks again to all of you for your support over this long ordeal. It was not as bad as anticipated, but it was not all that rosy either and your support, in whatever form it was provided, was immensely appreciated.
As I said above, after the one week deferral of chemo due to low platelet counts, I started the last 3 week long cycle. The impact was stronger than I anticipated, possibly in part because I had begun to feel so much better during the week free of chemo. Whatever - it was really exhuasting and I found my energy much lower than before. At the same time, the anticipation of an end to the standard chemo ironically made it harder to tolerate. On the one hand, having done very well spending much of several months in isolation (with the exception of the dogs who are not so good at conversation) I suddenly found myself very impatient with sitting home alone and very eager for company. On the other hand, having gotten immensely good at living strictily in the moment, with the end of chemo in sight I suddenly was again focusing on the future - what I needed to catch up on at home and at work, the need to seek a more permenent position within CDC, whatever chores and responsibilties that had been deferred for the many months of chemo and now seemed imminent. The combination was really quite distressing - made somewhat easier that I had been warned to expect this.
Fortunately for me my sister in law Dore (Davis's wife) came from Dallas to visit for the last weekend of chemo. In addition to driving me for the last dose of standard chemo on Monday before returning to Dallas on Tuesday, on Sat and Sunday she helped me problem solve on several issue, most urgent the weeds growing rapidly and high in my front yard. This may seem trivial but it was causing me much distress, partly because the stage of rapid growth the prior year had corresponded to the period when I was working 80 + hour weeks on flu response and my usual yard guy was out of town or otherwise not responding to my phone messages. As a result my neglect of the yard led to some unindentified person in my neighborhood leaving a snippy anonymous message in my mail box telling me how much my neighbors would appreciate it if I would just mow my yard. I was aware that my neighbors were unlikely to be any happier if I failed to address the weed issues this year again.
But Dore was terrific. First she suggested a weed wacker since I no longer have a functioning lawn mower. We bought the week wacker, which was a good idea for the future. And we have it partially assembled. The last few steps need stronger hands so I am waiting for an opportunity to exploit a male relative, friend or neighbor.
But meanwhile after we had the weed wacker partially assembled Dore went out and decided that the weeds were easily coming up by the roots and that was better approach. So she spent most of Sunday and Monday afternoons actually weeding the whole patch by hand. She did a terrific job but I felt kind of bad about it because it seemed above and beyond the call of duty. But it was terrific and when we got the weeds mostly out (for “we” read “she”) she tells me the St Augustine is coming back, but could benefit from having some of the heavy thatch removed. She seems to know a lot more about this than I do.
Dore insisted that she was actually enjoying the weeding, talking to neighbors who went by and listening to the birds. Possibly it was true the first afternoon, but I think she was just being nice the second one. Either way I am feeling a bit guilty, but extremely grateful.
Either way, the lawn improved, I now have a tool (needing only a couple of things tightened by stronger hands than mine) for when future such problems arise. And I finished my last standard chemo treatment that Monday April 12, an event Dore and I celebrated by chowing down on take out Lebanese food and a gigantic chocolate cup cake.
On Tuesday April 13 she went home. The dogs wandered restlessly sniffing at things and occasionally barking at me for no particular reason. They insisted on going out and back in multiple times the night after she left, and wandered over to sniff at the futon couch that served as her bed en route inside and outside. Occasionally for no particular reason that I could identify Balsam (the hound) would howl at me balefully. I think they were looking for Dore. Explaining that she had to go home because her husband and personal dogs were needing her does not seem to satisfy them. Fortunately with time they adjusted.
Meanwhile, the Friday after Dore left (and after my last standard chemo dose) I was again called and ordered to report for type and cross (blood work necessary to arrange a transfusion) followed by another blood transfusion on Saturday. I had hoped I had already had my last transfusion, but did feel a bit less guilty about letting Dore do all the yard work while I napped once I knew my hemoglobin was again below 8.
The following MOnday I got the first dose of the investigational drug Avastin alone (which I will take every 3 weeks for nearly another year) and started back to work in the afternoon. Despite my intention to work full time, I discovered that if I got in before 10 AM, worked a 7-8 hour day, all I could manage after that was to nap in my recliner until bed time, then transfer sleeping locations. Thursday I was on medical leave to get labs, and Friday I made it in about noon and back home about 4. A bit discouraging since the combination of being off chemo and knowing I had been freshly transfused (a situation that normally leads to a large increase in energy and endurace) indicated I was at a peak of energy...
Based on that experience, for now we have set up a schedule where I work 3 days a week (Mon - Wed) and am on medical leave Thursday and Fridays. For now that is working. The second week I managed to stay awake between the time I returned home and went to bed, which I consider a victory. This week (the one that starts tomorrow) I intend to try to walk a little bit in the evenings. That may be deferred a bit because in addition to fatigue the neuropathy increased during the last cycle. That results in numbness and tingling in my hands and feet, but also affects balance and other things. Time will tell. So in summary the recovery will obviously be slower than I would like, but I am seeing steady if small progress week by week,
Last Sunday I have a visit from cousins Ed and Clara Chapman from CT. They stopped by en route back to CT from visiting thier daughter and son in law in western NC, and stayed long enough to take me out for Dim Sum and help put away my Christmas decorations. Amazing how much more roomy the house looks when I remove these and the massive display of all greeting cards I had received over the coursse of chemo (Thanksgiving, Birthday, Christemas, New YEars, Easter and Get Well cards had grown to quite a large population).
And last week Bruce (the yard guy) returned to town and mowed my yard - picking up where Dore left off.
So for now things are good. the Avastin is not supposed to affect energy, bone marrow, or hair growth, leading me to optimistically anticipate hair beginning to grow back the week after I took my last chemo and planning to return to swimming at the gym a week or 2 later. But I am adjusting to a more realistic view (my hair probably won't begin to grow back for another month or so and I can expect to be recuperating physically all the way through next December). I expect to continue going on Thursdays for lab studies until my blood counts return to normal, which probably will take at least a month after the last standard chemo (through late May). Elizabeth (my chemo nurse) tells me that she has instructed the office to check with her before calling me in for any more transfusions. She wants to let my counts drop to lower levels if necessary to give the bone marrow to begin its own transfusion. I am hoping the counts don't get that low again, since I know from experience that low red blood cells have a marked impact on my ability to get anything done, other than napping.
Now that Standard chemo is finished and, unexpectedly but not surprisingly if I had thought about it, I am using up all my energy trying to return as fast as possible to normal activity levels, I will probably update this blog less frequently. I will try to update at least every 3 week cycle of avastin for the time being. I will also update if there are any major changes in status. So you don't have to worry that something has gone wrong if I do not update. If anything goes wrong I will be sure to update.
No news will be good news. In the absence of update - assume all is well.
And thanks again to all of you for your support over this long ordeal. It was not as bad as anticipated, but it was not all that rosy either and your support, in whatever form it was provided, was immensely appreciated.
Wednesday, April 14, 2010
LAST STANDARD CHEMO FINISHED!!!!
Thanks to the assistance of my wonderful sister in law Dore, I received my last standard chemo this past Monday. Tomorrow I return for my major end of standard therapy check up (blood tests, CT scan, Doctor exam), Monday I continue the experimental part of the treatment (avastin every 3 weeks for about another year), and Tuesday i start back to work. Knock on wood I will have the endurance and not have to back off for more leave.
My apologies to folks I worried by not posting this Monday night. Between the last chemo, visiting with Dore, and napping while Dore worked like a dog I sort of ran out of time.
More details latter I promise.
My apologies to folks I worried by not posting this Monday night. Between the last chemo, visiting with Dore, and napping while Dore worked like a dog I sort of ran out of time.
More details latter I promise.
Monday, April 5, 2010
SEcond of 3 treatments in the last cycle DOWN!
This morning I received Taxol, the second chemotherapy dose in my last cycle of 3 weeks of treatment. So far, all went well. My blood counts are really staying up - the tests last Thursday showed a hemoglobin staying up at close to 10.4, good platelets over 130,000 (100,000 are needed before they will give me treatment) and white cell counts in the 2,0000+ range.
So far, so good. That week vacation from chemo seems to have done me a great deal of good as far as the strength of my cell counts. It was also good and encouraging to have the week off chemo and recognize how much better I felt, how much my mental concentration and physical stamina improved.
However, back on the chemo both have done right down hill to a remarkable extent. My week vacation from poison raised my ambitions but the return to chemo has dashed my ability to do anything to enact them. So I am more aware than ever of what needs to be done but inable to do much of it. Oh well, just this week and one more left before I come off standard chemo and hopefully start improving.
Other issues: My lawn has started growing and the front is totally covered with fast growing weeds. If I am not able to do something to them soon I fear they will totally take over. Hastings (A local garden place) tells me I can buy a weed killer, hook it up to the garden hose, and spray the area and it should get rid of all weeds without bothering the grass. Sounds great. Also sounds like more than I can manage at the moment. However, my sister in law Dore is arriving from Dallas Saturday afternoon with the primary intent of driving me to my last chemo on Monday. But last night on the phone she offered to help with other things, and had spent the day gardening. Maybe I can convince her to spray the front lawn for weeds. It is a departure from her approach to gardening - she and my brother Davis are very organic - but she may be willing to compromise to help me out. JUst hope all the seed pods do not develop and bloom out before she arrives Saturday afternoon. 4.5 more days to go - we may make it!
My doc started me on neurotin, a medicine used to treat siezures, to try to slow the progression of the neuropathy and then speed its withdrawal after the chemo is over. The neurotin seems almost worse than the neuropathy. Not really, but it does make me drowsy and unsafe to drive - but it also seems to diminish the neuropathy. The neuropathy really improved during that one week off chemo - a hopeful sign that things will improve once i finish chemo (does not always happen, but usually does). However, it has rapidly gotten worse again on chemo. Also the "chemo brain" has worsened - I feel generally off balance, weak, tired and unable to get anything done. Fortunately there are only 2 weeks left. If the neurotin will improve / prevent worsening of this then it is work working with I just have to be sure I finish all my tasks that require me to drive in the morning before I take the morning dose of neurotin on any day I will need to use the car.
A friend from work and church invited me over on Easter morning to have leftover ham and potates gratin, plus lovely desserts. She had cooked a beautiful meal for visiting family the night before. They took off headed home early Easter morning, Sue went to services and then fed me afterward. It was a lovely opportunity to get out (no crowd, I could emerge) a delicious meal as always at Sue's, and a good opportunity to get out of the house confinement. but I was surprised how much energy it consumed to dress nicely and put on makeup - something i have not really done since I quit going to work. MAde it clear that my energy level was lower than I realized. And the visit was delightful, I returned home and then slept all afternoon in the recliner. I mean slept. Could hear myslef snoring but was too tired to bother to get up and readjust.
Well, you can never have too much naptime. May suggest that returning to work full time the week after chemo may not be totally realiztic, but you can only try. If i can't manage it, I can always cut back again.
Happy Easter everyone - 5 cycles and 2/3 treatments in the 6th cycle down, 1 standard treatment to go. Perfect timing to coincide with the major religious celebration of rejuvenation and rebirth.
So far, so good. That week vacation from chemo seems to have done me a great deal of good as far as the strength of my cell counts. It was also good and encouraging to have the week off chemo and recognize how much better I felt, how much my mental concentration and physical stamina improved.
However, back on the chemo both have done right down hill to a remarkable extent. My week vacation from poison raised my ambitions but the return to chemo has dashed my ability to do anything to enact them. So I am more aware than ever of what needs to be done but inable to do much of it. Oh well, just this week and one more left before I come off standard chemo and hopefully start improving.
Other issues: My lawn has started growing and the front is totally covered with fast growing weeds. If I am not able to do something to them soon I fear they will totally take over. Hastings (A local garden place) tells me I can buy a weed killer, hook it up to the garden hose, and spray the area and it should get rid of all weeds without bothering the grass. Sounds great. Also sounds like more than I can manage at the moment. However, my sister in law Dore is arriving from Dallas Saturday afternoon with the primary intent of driving me to my last chemo on Monday. But last night on the phone she offered to help with other things, and had spent the day gardening. Maybe I can convince her to spray the front lawn for weeds. It is a departure from her approach to gardening - she and my brother Davis are very organic - but she may be willing to compromise to help me out. JUst hope all the seed pods do not develop and bloom out before she arrives Saturday afternoon. 4.5 more days to go - we may make it!
My doc started me on neurotin, a medicine used to treat siezures, to try to slow the progression of the neuropathy and then speed its withdrawal after the chemo is over. The neurotin seems almost worse than the neuropathy. Not really, but it does make me drowsy and unsafe to drive - but it also seems to diminish the neuropathy. The neuropathy really improved during that one week off chemo - a hopeful sign that things will improve once i finish chemo (does not always happen, but usually does). However, it has rapidly gotten worse again on chemo. Also the "chemo brain" has worsened - I feel generally off balance, weak, tired and unable to get anything done. Fortunately there are only 2 weeks left. If the neurotin will improve / prevent worsening of this then it is work working with I just have to be sure I finish all my tasks that require me to drive in the morning before I take the morning dose of neurotin on any day I will need to use the car.
A friend from work and church invited me over on Easter morning to have leftover ham and potates gratin, plus lovely desserts. She had cooked a beautiful meal for visiting family the night before. They took off headed home early Easter morning, Sue went to services and then fed me afterward. It was a lovely opportunity to get out (no crowd, I could emerge) a delicious meal as always at Sue's, and a good opportunity to get out of the house confinement. but I was surprised how much energy it consumed to dress nicely and put on makeup - something i have not really done since I quit going to work. MAde it clear that my energy level was lower than I realized. And the visit was delightful, I returned home and then slept all afternoon in the recliner. I mean slept. Could hear myslef snoring but was too tired to bother to get up and readjust.
Well, you can never have too much naptime. May suggest that returning to work full time the week after chemo may not be totally realiztic, but you can only try. If i can't manage it, I can always cut back again.
Happy Easter everyone - 5 cycles and 2/3 treatments in the 6th cycle down, 1 standard treatment to go. Perfect timing to coincide with the major religious celebration of rejuvenation and rebirth.
Tuesday, March 30, 2010
next day part 2
i failed to explain that I did not start my new medicine today because the instructions say to start it at night because it likely makes you drowsy. Too bad I did not think about that last night. Looks like tomorrow may be another late start day.
New medicine starting tonight. Check in in a couple of days to see (2) how the labs on Thursday go and (2) if I am still awake enough to add to the blog after I start the Gabapentin.
New medicine starting tonight. Check in in a couple of days to see (2) how the labs on Thursday go and (2) if I am still awake enough to add to the blog after I start the Gabapentin.
next day
I let the dogs out and went back to bed. I woke up at approximately noon ish when someone called me. Apparent;y that post-chemo famous steriod boost does not work as powerfully as it used to on by the 6th cycle. Although I did take a sleeping pill last night. But at about 10 pm and it only lasts for about 8 hours. And in the past often was not very effectively at all.
Oh well, sub total of accomplishments today:
1. made further progress on the necessary arrangements to be made to close out my original checking account and operate contiually out of the new and hopefully more secure one
2. becaue it was such a beautiful day (63-66 and sunny) and because my white blood cell counts had been the highest they have been in months yesterday due to the week vacation from chemo (4,500 - almost low normal) I decided to take advantace of the beautiful day to get out and run some necessary errands before my energy faded
3. dropped off and picked up dry cleaning, out breakfast/lunch out at panera bread, did grocery shopping for essentials (OK mostly for cravings like crystal light drinks and coconut cake for Easter, but also fresh fruit and other good healthy things), and tracked down and identied the driving route and time to the local place in Atlanta where I go for chemo next Monday on account of my usual chemo nurse being on vacation.
By the time i got home and feed the dogs it was after 4 and I was pooped.
4. so it looks like probably no more paperwork accomplished today. Unless i whip through my medical bills while watching TV from the recliner chair.
Still over all pleased to be starting my 6h and last round of standard chemo. a few small wrinkles.
I did not start my new medication - Gabapentin also known as neurotin. Despite my eager description of how the week without chemo had really improved it and although I occasionally had trouble opening things the frequency with which I was aware of it beyond my hands and feet (legs, back face) had really receded and practically disappeared. they were not impresssed and thought I should start this drug, normally given for seizures, which is supposed to slow the progression of neuropathy and then after I finish the standard chemo to increase how rapidly it receeds. Apparently it can take years to receed.
Also, this morning I looked down and noticed petecia around my ankles. these are little red spots that often form when platelets are low. If you are a fan of CSI or NCIS or other detective shows, these are the little red spots that medical examiners point out to the detectives as evidence that the dead person was strangled or someimes drowned. But I promise you no one has been sneaking in and trying to strangle my feet while I sleep. Remember, the dogs lack pre-hensile thumbs. And low howls at the first evidence of intruders. so....
Likely these date from last week when we know my platelets were low and I just failed to notice them until today. If not, it may be a sign that my platelets are dropping rapidly in response to this latest round of chemo. On the good side - that is clear evience the chemo is doing what it is supposed to do. On the down side - it may suggest another delay may lurck in my future. Time will tell. We will get the first hint when i have my blood tested this thursday.
The people who clean my home every other week came this week and suggested that could help me take down the Christmas decoratins and put them away. Hmmm. I told them my cousins were coming on April 25 and I had promised them they could help take down and put away the Christmas decorations as a celebration of finishing my chemo. That made my cleaners happy. I hope have have finished chemo by then but if not, I will still be ready for the Christmas decoratioms to go away. Somehow once Easter passes they cease to seem festive and become sort of tired.
That is all the news that is fit to print for today.
Oh well, sub total of accomplishments today:
1. made further progress on the necessary arrangements to be made to close out my original checking account and operate contiually out of the new and hopefully more secure one
2. becaue it was such a beautiful day (63-66 and sunny) and because my white blood cell counts had been the highest they have been in months yesterday due to the week vacation from chemo (4,500 - almost low normal) I decided to take advantace of the beautiful day to get out and run some necessary errands before my energy faded
3. dropped off and picked up dry cleaning, out breakfast/lunch out at panera bread, did grocery shopping for essentials (OK mostly for cravings like crystal light drinks and coconut cake for Easter, but also fresh fruit and other good healthy things), and tracked down and identied the driving route and time to the local place in Atlanta where I go for chemo next Monday on account of my usual chemo nurse being on vacation.
By the time i got home and feed the dogs it was after 4 and I was pooped.
4. so it looks like probably no more paperwork accomplished today. Unless i whip through my medical bills while watching TV from the recliner chair.
Still over all pleased to be starting my 6h and last round of standard chemo. a few small wrinkles.
I did not start my new medication - Gabapentin also known as neurotin. Despite my eager description of how the week without chemo had really improved it and although I occasionally had trouble opening things the frequency with which I was aware of it beyond my hands and feet (legs, back face) had really receded and practically disappeared. they were not impresssed and thought I should start this drug, normally given for seizures, which is supposed to slow the progression of neuropathy and then after I finish the standard chemo to increase how rapidly it receeds. Apparently it can take years to receed.
Also, this morning I looked down and noticed petecia around my ankles. these are little red spots that often form when platelets are low. If you are a fan of CSI or NCIS or other detective shows, these are the little red spots that medical examiners point out to the detectives as evidence that the dead person was strangled or someimes drowned. But I promise you no one has been sneaking in and trying to strangle my feet while I sleep. Remember, the dogs lack pre-hensile thumbs. And low howls at the first evidence of intruders. so....
Likely these date from last week when we know my platelets were low and I just failed to notice them until today. If not, it may be a sign that my platelets are dropping rapidly in response to this latest round of chemo. On the good side - that is clear evience the chemo is doing what it is supposed to do. On the down side - it may suggest another delay may lurck in my future. Time will tell. We will get the first hint when i have my blood tested this thursday.
The people who clean my home every other week came this week and suggested that could help me take down the Christmas decoratins and put them away. Hmmm. I told them my cousins were coming on April 25 and I had promised them they could help take down and put away the Christmas decorations as a celebration of finishing my chemo. That made my cleaners happy. I hope have have finished chemo by then but if not, I will still be ready for the Christmas decoratioms to go away. Somehow once Easter passes they cease to seem festive and become sort of tired.
That is all the news that is fit to print for today.
Monday, March 29, 2010
6th cycle successfully started
Blood counts were adequate today, so we successfully started the 6th and last cycle of standard chemo. That means after starting the day getting blood counts done at the hospital, I received my 3 chemo drugs, had a doctor visit (well really with the nurse practitioner who works with dr. Green but he also dropped by later), and got the schedule straightened out for the next part of the chemo.
The next 2 weeks, assumeing my cell counts hold up, I will get taxol alone on Monday. My wonderful chemo nurse Elizabeth will be on a well earned vacation in Hawaii the following week, but has arranged for me to get my chemo here in Atlanta in the office of Dr. Green's partners. And the third week in addition to the Taxol on Monday and the labs on Thursday, I will have to get additional labs, have another doctor's visit, and get a CT Scan. It will be a very busy week.
If I have the schedule right, and if all the counts hold up, the following week I will be finished with standard chemo, but not with the whole run. I will start the part of the investigational trial where I get Avastin alone the first Monday of every 3 week cycle and will continue this part for nearly a year.
I also hope to start back to work that fourth week.
All in all it will be a pretty busy 3rd and 4th week. Wish me luck.
The next 2 weeks, assumeing my cell counts hold up, I will get taxol alone on Monday. My wonderful chemo nurse Elizabeth will be on a well earned vacation in Hawaii the following week, but has arranged for me to get my chemo here in Atlanta in the office of Dr. Green's partners. And the third week in addition to the Taxol on Monday and the labs on Thursday, I will have to get additional labs, have another doctor's visit, and get a CT Scan. It will be a very busy week.
If I have the schedule right, and if all the counts hold up, the following week I will be finished with standard chemo, but not with the whole run. I will start the part of the investigational trial where I get Avastin alone the first Monday of every 3 week cycle and will continue this part for nearly a year.
I also hope to start back to work that fourth week.
All in all it will be a pretty busy 3rd and 4th week. Wish me luck.
Friday, March 26, 2010
Z-Z-z-z-z-z-z
So after all that bragging about my stamina yesterday i spent most of the day today dozing in the recliner chair again.
Oh well, I still have the weekend to try to knock off more of the past due paperwork before I get dosed with poison again - I hope. The clinic called to say my platelets (labs from Thursday) were up but only to 95,000. So I have to have labs tested again Monday morning before I can get the chemo. Since they only have to rise another 5, 000, hopefully they will accomplish that by Monday and I can proceed to start the 6th and last cycle without further delay.
Oh well, I still have the weekend to try to knock off more of the past due paperwork before I get dosed with poison again - I hope. The clinic called to say my platelets (labs from Thursday) were up but only to 95,000. So I have to have labs tested again Monday morning before I can get the chemo. Since they only have to rise another 5, 000, hopefully they will accomplish that by Monday and I can proceed to start the 6th and last cycle without further delay.
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