Zap #11 and Zap #12 down, 13 zaps to go
For some reason, Wednesday's radiation treatment wiped me out. I was so tired, I could hardly lift an arm. I think I slept 11 hours. I also had some discomfort in my abdomen, sort of aching in my pelvic bones. They took a bunch of x-rays on Wed. to confirm the line-up for the radiation, and they ended up changing the hatch marks they drew on me (one on each side and one in the middle, where they put the tattoos). They said this was normal, and the change was very small. I was also wiped out again after yesterday's treatment, not quite as bad, but almost. Basically after 7:00 pm, I'm useless. They did blood work yesterday and I should be able to find out the results today. I wonder if my blood counts will reflect the reason for my fatigue.
It's getting colder again and supposed to stay cold for a while. I guess Jessie and my walks in the park this weekend will be chilly affairs. I really need this weekend, to bounce back from this fatigue a little bit. It's depressing to me that after today I will only be half done. I'm trying to hang on to the thought of spring, but it was easier this past week when the temperature hit 57 degrees and I saw a huge flock of Canadian geese grazing in the lawns of St. Joseph's College. Yesterday we got snow, not a lot, but enough to cover the grass everywhere and bring back the look of winter. Last night the feel of winter arrived and iced up everything that had melted. Black ice, dark mood, somewhere under there, optimism sleeping, waiting to be woken again.
Peace.
Friday, January 29, 2010
Tuesday, January 26, 2010
Tuesday afternoon
Zap #9 and zap #10 down, 15 zaps to go.
I saw Nurse S yesterday; she still leaves me cold. She's not horrible or anything, I just don't "connect" with her. I guess she makes me appreciate all the other nurses, doctors, nurses aides, technicians with whom I have connected. Saw Dr. VR today. Both ask me the same questions over and over: How am I feeling? Any change in my bowel movements? Diarrhea? Any change in bladder (frequent urination is a potential side effect)? Any increase in fatigue? Over and over, to the point that I start thinking maybe I am experiencing these side effects. But I'm not. I'm doing okay. I AM tired, more tired than before all this stuff began, but I read somewhere that it can take a month to get back to "normal" from every chemo treatment and every week of radiation therapy, so that would be a LONG time. But I'm doing okay. Dr. VR pointed out that at the end of this week, I will be half done with the radiation. Whoopee! My reward for finishing radiation? I get to go back to chemo! (Actually so far the radiation isn't that bad; I'm not suffering side effects yet - except continuing fatigue - and I am able to work and live life. I'm not complaining.)
Thanks to everyone for the continuing calls, kind email messages, particularly those who have had and taken the time to stay in touch - even if briefly - regularly. I know I don't always have a chance to reply directly to you, but it means a lot to me to get your messages or comments on this blog or phone calls/messages. Word seems to be leaking out more broadly at my office, and I have had emails, phone calls and cards from people who are just hearing the news. It's all so astounding to me, the breadth and depth of the support of my family and friends. Indeed I feel very lucky.
Kim is following up at work with the HR department about the disability insurance company fiasco. I'm not taking any bets on the outcome but it will work out, one way or another.
I hear cold weather is coming, but I'm in a spring-is-going-to-come kind of mood.
Peace.
I saw Nurse S yesterday; she still leaves me cold. She's not horrible or anything, I just don't "connect" with her. I guess she makes me appreciate all the other nurses, doctors, nurses aides, technicians with whom I have connected. Saw Dr. VR today. Both ask me the same questions over and over: How am I feeling? Any change in my bowel movements? Diarrhea? Any change in bladder (frequent urination is a potential side effect)? Any increase in fatigue? Over and over, to the point that I start thinking maybe I am experiencing these side effects. But I'm not. I'm doing okay. I AM tired, more tired than before all this stuff began, but I read somewhere that it can take a month to get back to "normal" from every chemo treatment and every week of radiation therapy, so that would be a LONG time. But I'm doing okay. Dr. VR pointed out that at the end of this week, I will be half done with the radiation. Whoopee! My reward for finishing radiation? I get to go back to chemo! (Actually so far the radiation isn't that bad; I'm not suffering side effects yet - except continuing fatigue - and I am able to work and live life. I'm not complaining.)
Thanks to everyone for the continuing calls, kind email messages, particularly those who have had and taken the time to stay in touch - even if briefly - regularly. I know I don't always have a chance to reply directly to you, but it means a lot to me to get your messages or comments on this blog or phone calls/messages. Word seems to be leaking out more broadly at my office, and I have had emails, phone calls and cards from people who are just hearing the news. It's all so astounding to me, the breadth and depth of the support of my family and friends. Indeed I feel very lucky.
Kim is following up at work with the HR department about the disability insurance company fiasco. I'm not taking any bets on the outcome but it will work out, one way or another.
I hear cold weather is coming, but I'm in a spring-is-going-to-come kind of mood.
Peace.
Sunday, January 24, 2010
Sunday morning
Jessie and I had a good walk in the park this morning. But that's not why I am making this post. As someone going through radiation treatment, this NYTimes article scared the bejeezes out of me:
http://www.nytimes.com/2010/01/24/health/24radiation.html?hp
I guess I need to ask my radiation techs every day, "Please confirm that you are using the correct dosage". Seems kind of inadequate to the consequences should they fail to do so.
Oh well.
Peace.
http://www.nytimes.com/2010/01/24/health/24radiation.html?hp
I guess I need to ask my radiation techs every day, "Please confirm that you are using the correct dosage". Seems kind of inadequate to the consequences should they fail to do so.
Oh well.
Peace.
Saturday, January 23, 2010
Saturday morning
Better day beginning. Jessie and I went to the park and walked both loops. A quiet morning, with a pale eggshell yellow sunrise. We sat on a bench by the pond a few minutes. The pond ice is still thick, white, with rough and jagged ridges. I want to see it begin to break up, show patches of water, to know my heron and duck friends will be back ... but those days are still off in the future. And in a post-cancer world, I am trying to learn not to waste time in wanting to skip any parts of life since I am reminded that I don't know how many parts I have left. (I did see a flock of Canadian geese this week, but not at the park. They were grazing on the lawn of the local college campus.)
Anyway, the sun is out.
Peace.
Anyway, the sun is out.
Peace.
Friday, January 22, 2010
Friday evening
I'm so mad, I could spit nails.
I got a call at home tonight from the disability insurance company. To make a long and incredibly frustrating conversation shorter, when the disability insurance company approved my doctor's request that I be permitted to go back to work 3/4 time (6 hours a day), they FAILED to tell me that nonetheless I would be charged 1/2 day of disability for every day I worked 6 hours. In other words, they would treat me as if I were only working 4 hours a day. The result is that I will use up my short-term disability twice as fast.
I am so pissed, I want to throw something breakable at a wall, I want to heave big stones in still water and watch the surface crack up. I want to bang my own head on the floor. I want to crawl into a dark space and not come out ... well, you get the idea.
If I had known, I might have scheduled the radiation at a different time of day - early morning or later - and worked 8 hour days as long as I felt able to, to husband my remaining days of short-term disability for the end of radiation when I expect to feel more tired and the next chemo session. Now, it could turn out that my short-term disability is used up just when I am going back in chemo, if not sooner. And I am sure the reason this happened is that "my" case manager at this stupid company is herself out on short-term disability. I have spoken to people there probably 6 or 7 times, and have never spoken to the same person twice. And yet, they claim they assign a dedicated "case manager" to every case. Great customer service, right?
The most ridiculous thing of all that this woman told me tonight is that since this is a new calendar year, if I come back and work even just one (1), a single full 8-hour day, my "bank" of short-term disability will reset and I will have 13 more weeks of short-term disability available to me for 2010. But of course, I want to use up everything from 2009 that's available to me first. (What if - God forbid - the cancer came back in August or September and I have to go out on disability again in 2010???)
Dealing with this disability insurance company feels to me like being a bug that inadvertently fell off a wall into a bathtub, and now it can't climb up the slippery side of the tub to escape so it scrambles around, afraid and pissed off, as it waits for the water to come rushing out to flush it into oblivion. And if this is how I feel, a person who HAS disability insurance, who HAS health insurance, what about the rest of the world?
Nonetheless I broke down and sobbed after I got off the phone with that woman. It was almost as if all the anger and sadness about this whole cancer thing came pouring out of me more forcefully than since this whole thing started. Of course, I am sure it will work out - one way or another. It's just horrible to be treated with such polite (she kept apologizing) indifference. (The bug is thinking, "Come on, just step on me once and for all and get it over with!)
I'm tired. I'm going to bed early.
Peace. Soon. Please.
I got a call at home tonight from the disability insurance company. To make a long and incredibly frustrating conversation shorter, when the disability insurance company approved my doctor's request that I be permitted to go back to work 3/4 time (6 hours a day), they FAILED to tell me that nonetheless I would be charged 1/2 day of disability for every day I worked 6 hours. In other words, they would treat me as if I were only working 4 hours a day. The result is that I will use up my short-term disability twice as fast.
I am so pissed, I want to throw something breakable at a wall, I want to heave big stones in still water and watch the surface crack up. I want to bang my own head on the floor. I want to crawl into a dark space and not come out ... well, you get the idea.
If I had known, I might have scheduled the radiation at a different time of day - early morning or later - and worked 8 hour days as long as I felt able to, to husband my remaining days of short-term disability for the end of radiation when I expect to feel more tired and the next chemo session. Now, it could turn out that my short-term disability is used up just when I am going back in chemo, if not sooner. And I am sure the reason this happened is that "my" case manager at this stupid company is herself out on short-term disability. I have spoken to people there probably 6 or 7 times, and have never spoken to the same person twice. And yet, they claim they assign a dedicated "case manager" to every case. Great customer service, right?
The most ridiculous thing of all that this woman told me tonight is that since this is a new calendar year, if I come back and work even just one (1), a single full 8-hour day, my "bank" of short-term disability will reset and I will have 13 more weeks of short-term disability available to me for 2010. But of course, I want to use up everything from 2009 that's available to me first. (What if - God forbid - the cancer came back in August or September and I have to go out on disability again in 2010???)
Dealing with this disability insurance company feels to me like being a bug that inadvertently fell off a wall into a bathtub, and now it can't climb up the slippery side of the tub to escape so it scrambles around, afraid and pissed off, as it waits for the water to come rushing out to flush it into oblivion. And if this is how I feel, a person who HAS disability insurance, who HAS health insurance, what about the rest of the world?
Nonetheless I broke down and sobbed after I got off the phone with that woman. It was almost as if all the anger and sadness about this whole cancer thing came pouring out of me more forcefully than since this whole thing started. Of course, I am sure it will work out - one way or another. It's just horrible to be treated with such polite (she kept apologizing) indifference. (The bug is thinking, "Come on, just step on me once and for all and get it over with!)
I'm tired. I'm going to bed early.
Peace. Soon. Please.
Thursday, January 21, 2010
Thursday evening
Zap #5, 6, 7 and 8 down - 17 zaps to go.
Catch up time, I guess. So far at least - the main side effect of radiation (and likely cumulatively of the chemo before it) is that I continue to be very tired, often falling asleep between 8:00 and 9:00. I continue to get up pretty early, between 5:30 and 6:00, so I guess it's not that dramatic a change from my normal level of tiredness.
Radiation is mostly a non-event. The 3 main techs who perform it are very sweet, very young, and hopefully very competent. The radiation itself takes perhaps 6-7 minutes. Yesterday in addition to the radiation, they did some x-rays, the point of which is to check and confirm the positioning of the lines that guide them in where they are zapping me. (Which reminds me - I was talking to my friend J at work the other day. She also had breast cancer, a mastectomy but didn't need chemo or radiation. She was talking about putting a temporary tattoo on her breast before she goes back for her next doctor's appointment to see the effect on her doctor. I thought I might consider the same thing - a nice temporary tattoo across my abdomen where they zap me every day. I can imagine the Gang of Three's shock and awe when I lie on the radiation gurney, roll down my pants and there's a big "tattoo" of Che Guevara or something! It's a thought.) I also met with Nurse S one day, I forget which day, and with Dr. VR, another day. Since I had no exciting new side effects to complain of, the meetings were pro forma and short.
Perhaps the most interesting part of radiation has actually been meeting some other women also undergoing radiation. There are 2 women that come every day for appointments that follow mine. One is a woman in her late 30's or 40's, L. Interestingly she works for a pharmaceutical company doing research into oncology drugs. She had breast cancer, stage 0 (STAGE 0!!!), but they are doing radiation prophylactically. The other woman is older, perhaps early to mid 60's. M. She also had some very early form of breast cancer - I don't even think it was staged - but because her mother had it and her sister currently has a recurrence of an aggressive form of it, they also are treating her prophylactically. Neither L nor M had to have chemo.
Hearing their stories was sort of sobering for me. I guess upstairs on the second floor - that's where they do the chemo - everyone up there has some form of cancer or some cancer at some stage that requires chemotherapy - which means, treating the entire body to rid it of cancer cells, which if you think of it, by definition is more sobering than radiation which is targeted treatment to deal with a specific part of the body. Upstairs among the chemo patients, I felt lucky - so many people there for their second or third round of chemo to deal with reoccurring cancers. On the first floor, among the radiation patients I've met so far, it's they rather than I who seem lucky.
And yet I don't exactly feel depressed or demoralized by this. I still feel basically positive. I've heard that often depression and fears set in AFTER treatment is concluded. I can see that. It's almost as if you feel a kind of inviolability while you are going through treatment, like you are in a weird protective cocoon created by the chemo/radiation - the really really bad stuff (pain from the disease itself--versus pain from the treatment, death, etc.) can't get you while you're in treatment, right? But then when the treatment stops, you start thinking: What now? What if it comes back? How will I know if it comes back? What if it comes back worse? and so on. It's a demonstration of the truth in the old adage that the devil you know always seems preferable to the one you don't.
Meanwhile I struggle with anger and depression about the unbelievable delays in getting assistance - water (WATER!), food, basic medical care, shelter - to people in Haiti. Basically all the political news - results of the MA election, Supreme Court overturning campaign finance laws, etc. etc. - depresses and angers me. My sweet daughter-in-law's father passed away - may he rest in peace - and she and my grandson are on their way to Honduras. Sometimes I feel like I'm drowning. One rope I reach out for is my walks with Jessie. I hope to get to the park Saturday and Sunday this week. I'm starting to read (and hopefully remember) a little about freshwater ecology (who knew fresh water is heaviest at 39.2 degrees Fahrenheit? Not me.)
Thanks to all who have called to check on me, sent cards and emails to make sure I'm okay. It's largely because of your support that I am. It's amazing to me. And I am okay.
Peace.
Catch up time, I guess. So far at least - the main side effect of radiation (and likely cumulatively of the chemo before it) is that I continue to be very tired, often falling asleep between 8:00 and 9:00. I continue to get up pretty early, between 5:30 and 6:00, so I guess it's not that dramatic a change from my normal level of tiredness.
Radiation is mostly a non-event. The 3 main techs who perform it are very sweet, very young, and hopefully very competent. The radiation itself takes perhaps 6-7 minutes. Yesterday in addition to the radiation, they did some x-rays, the point of which is to check and confirm the positioning of the lines that guide them in where they are zapping me. (Which reminds me - I was talking to my friend J at work the other day. She also had breast cancer, a mastectomy but didn't need chemo or radiation. She was talking about putting a temporary tattoo on her breast before she goes back for her next doctor's appointment to see the effect on her doctor. I thought I might consider the same thing - a nice temporary tattoo across my abdomen where they zap me every day. I can imagine the Gang of Three's shock and awe when I lie on the radiation gurney, roll down my pants and there's a big "tattoo" of Che Guevara or something! It's a thought.) I also met with Nurse S one day, I forget which day, and with Dr. VR, another day. Since I had no exciting new side effects to complain of, the meetings were pro forma and short.
Perhaps the most interesting part of radiation has actually been meeting some other women also undergoing radiation. There are 2 women that come every day for appointments that follow mine. One is a woman in her late 30's or 40's, L. Interestingly she works for a pharmaceutical company doing research into oncology drugs. She had breast cancer, stage 0 (STAGE 0!!!), but they are doing radiation prophylactically. The other woman is older, perhaps early to mid 60's. M. She also had some very early form of breast cancer - I don't even think it was staged - but because her mother had it and her sister currently has a recurrence of an aggressive form of it, they also are treating her prophylactically. Neither L nor M had to have chemo.
Hearing their stories was sort of sobering for me. I guess upstairs on the second floor - that's where they do the chemo - everyone up there has some form of cancer or some cancer at some stage that requires chemotherapy - which means, treating the entire body to rid it of cancer cells, which if you think of it, by definition is more sobering than radiation which is targeted treatment to deal with a specific part of the body. Upstairs among the chemo patients, I felt lucky - so many people there for their second or third round of chemo to deal with reoccurring cancers. On the first floor, among the radiation patients I've met so far, it's they rather than I who seem lucky.
And yet I don't exactly feel depressed or demoralized by this. I still feel basically positive. I've heard that often depression and fears set in AFTER treatment is concluded. I can see that. It's almost as if you feel a kind of inviolability while you are going through treatment, like you are in a weird protective cocoon created by the chemo/radiation - the really really bad stuff (pain from the disease itself--versus pain from the treatment, death, etc.) can't get you while you're in treatment, right? But then when the treatment stops, you start thinking: What now? What if it comes back? How will I know if it comes back? What if it comes back worse? and so on. It's a demonstration of the truth in the old adage that the devil you know always seems preferable to the one you don't.
Meanwhile I struggle with anger and depression about the unbelievable delays in getting assistance - water (WATER!), food, basic medical care, shelter - to people in Haiti. Basically all the political news - results of the MA election, Supreme Court overturning campaign finance laws, etc. etc. - depresses and angers me. My sweet daughter-in-law's father passed away - may he rest in peace - and she and my grandson are on their way to Honduras. Sometimes I feel like I'm drowning. One rope I reach out for is my walks with Jessie. I hope to get to the park Saturday and Sunday this week. I'm starting to read (and hopefully remember) a little about freshwater ecology (who knew fresh water is heaviest at 39.2 degrees Fahrenheit? Not me.)
Thanks to all who have called to check on me, sent cards and emails to make sure I'm okay. It's largely because of your support that I am. It's amazing to me. And I am okay.
Peace.
Saturday, January 16, 2010
Saturday midday
Zap #3 and #4 down, 21 zaps to go
Nothing out of ordinary about zap #3 and #4 except perhaps how quickly they went. I was in and out of the Cancer Center in 10 minutes. At #3 I met a woman in the women's waiting area (it's for women because it has 3 women's changing rooms off of it where women can change their clothes and put on a gown, and then lock up their clothes and purses in a locker). She had been there the day before too; she said it was her 8th radiation treatment and she will undergo 35. Her scheduled time is 15 minutes after mine, so we'll likely overlap often. We introduced ourselves but didn't really have time to talk because they came to take me for zap-dom. Still it was nice to actually meet someone and talk a minute rather than just pass in the hall.
Jessie and I went to the park this morning. It was much warmer, much of the snow has melted although the pond is still covered with ice. It was nice out, the eastern sky blushing orangish-pink, like a ripening peach. Mostly nice because it was warn. We walked both loops - first time in a several weeks to do so.
My 2nd and 3rd books came - on ducks and geese and on pond ecology. The duck and geese book is pretty, nice color pictures of many different types of ducks and geese, but not a lot of information. As I already knew, the ducks at the pond are mallards, and the geese at the pond are Canadian geese. I will need to dig a little deeper to find out more, perhaps at the library. The pond ecology book looks good.
At work yesterday, I had 2 interesting cancer-related experiences. First, a woman lawyer with whom I've always had a pleasant but not a close relationship - just to say hello to, or chat a moment in the hall - stopped by my desk and said that she happened to overhear me discussing chemo with another woman in the office, and she wanted to wish me well. What was interesting was that she teared up while telling me she hoped I kept my positive attitude and came out of this all okay, etc. It seemed to me she must have had someone close to her go through this, perhaps with not great results. Then later I was in an office waiting for a meeting to start with several other people, including a new attorney who just started this week. At this point, only he and I were there (at that point I had been introduced to him but that's all). He leaned over toward me and said that he had had leukemia - I think he said 12 or 13 years ago - and had gone through chemo and all and had been completely fine ever since. He said if I ever felt I would like to talk to him about things, he would be glad to talk with me. Cancer, the great leveler.
Beautiful day out today. They say they have buried 40,000 people in Haiti and many more are still buried in rubble. The sun shines in Haiti, too, but obviously not so felicitously.
Prayers for peace, for health, for sustenance, for reunited families.
Nothing out of ordinary about zap #3 and #4 except perhaps how quickly they went. I was in and out of the Cancer Center in 10 minutes. At #3 I met a woman in the women's waiting area (it's for women because it has 3 women's changing rooms off of it where women can change their clothes and put on a gown, and then lock up their clothes and purses in a locker). She had been there the day before too; she said it was her 8th radiation treatment and she will undergo 35. Her scheduled time is 15 minutes after mine, so we'll likely overlap often. We introduced ourselves but didn't really have time to talk because they came to take me for zap-dom. Still it was nice to actually meet someone and talk a minute rather than just pass in the hall.
Jessie and I went to the park this morning. It was much warmer, much of the snow has melted although the pond is still covered with ice. It was nice out, the eastern sky blushing orangish-pink, like a ripening peach. Mostly nice because it was warn. We walked both loops - first time in a several weeks to do so.
My 2nd and 3rd books came - on ducks and geese and on pond ecology. The duck and geese book is pretty, nice color pictures of many different types of ducks and geese, but not a lot of information. As I already knew, the ducks at the pond are mallards, and the geese at the pond are Canadian geese. I will need to dig a little deeper to find out more, perhaps at the library. The pond ecology book looks good.
At work yesterday, I had 2 interesting cancer-related experiences. First, a woman lawyer with whom I've always had a pleasant but not a close relationship - just to say hello to, or chat a moment in the hall - stopped by my desk and said that she happened to overhear me discussing chemo with another woman in the office, and she wanted to wish me well. What was interesting was that she teared up while telling me she hoped I kept my positive attitude and came out of this all okay, etc. It seemed to me she must have had someone close to her go through this, perhaps with not great results. Then later I was in an office waiting for a meeting to start with several other people, including a new attorney who just started this week. At this point, only he and I were there (at that point I had been introduced to him but that's all). He leaned over toward me and said that he had had leukemia - I think he said 12 or 13 years ago - and had gone through chemo and all and had been completely fine ever since. He said if I ever felt I would like to talk to him about things, he would be glad to talk with me. Cancer, the great leveler.
Beautiful day out today. They say they have buried 40,000 people in Haiti and many more are still buried in rubble. The sun shines in Haiti, too, but obviously not so felicitously.
Prayers for peace, for health, for sustenance, for reunited families.
Wednesday, January 13, 2010
Wednesday evening
Zap # 2 down; 23 zaps to go.
I had my first radiation session yesterday, preceded by getting positioned on the "table" and having a bunch of x-rays taken to help line me precisely. The whole thing took about 30 minutes. I met 3 new young technicians, a young man and 2 young women (stress on young, but all nice). Then today I went to the Cancer Center twice; once in the morning for an appointment with one of Dr R's physician assistants, P. I had blood work done and then met with her. Nothing unusual. Then I tried to see Nurse E to set my appointment to come back after the radiation is all done to start the whole next round of chemo, but first the PA had to finish writing her notes in my chart and Nurse E was busy. So I left and came back in the afternoon, before my radiation appointment. Nurse E gave me a date - Feb 23 - to schedule an appointment with Dr. R, but when I tried to do that, the "scheduler" (the cancer center has people who do nothing but schedule appointments with the various doctors, PAs etc.), the scheduler said that Dr. R is not taking appointments on that date and she'd have to get back to me. Then I went for Zap #2. This time it took all of about 10 minutes. One odd thing I learned is that they zap me on all 4 sides - top, from each side, and bottom, sort of like a rotisserie chicken, and apparently for basically the same reason - to keep the overall impact on all the stuff in there balanced.
No radiation next Monday - Martin Luther King day - which means the current date for finishing up the radiation is February 16 rather than February 15th. Oh well. I am actually thinking about how to take one day off - maybe a Monday - so David and I might fly to Nashville for a short weekend visit with Aunt M, cousin C and cousin D (and D's crazy boyfriend, L - by the way, that's how L referred to himself in his very sweet and thoughtful email to me). I would really like to make that visit during the radiation rather than after, when chemo starts again, or waiting until all of this is supposedly "over." We'll see. I'm checking out fares.
I'm really tired today, likely just due to getting up at 5:30 this morning and busy day at work (plus 2 trips to the hospital). Nice talk with V today, voice messages from T and D and H, checking with me. Today spoke with my daughter - who is very worried about friends in Haiti (she spent 10 days there last year, working with an organization called S.O.I.L). News of Haiti does put things in perspective, doesn't it? Why does a major earthquake fault line run through Haiti, one of the poorest countries in the world (if not the poorest), and not through Lichtenstein or Dubai? Not that I'd wish an earthquake on anyone.
Peace peace peace - this evening first and foremost, in Haiti.
I had my first radiation session yesterday, preceded by getting positioned on the "table" and having a bunch of x-rays taken to help line me precisely. The whole thing took about 30 minutes. I met 3 new young technicians, a young man and 2 young women (stress on young, but all nice). Then today I went to the Cancer Center twice; once in the morning for an appointment with one of Dr R's physician assistants, P. I had blood work done and then met with her. Nothing unusual. Then I tried to see Nurse E to set my appointment to come back after the radiation is all done to start the whole next round of chemo, but first the PA had to finish writing her notes in my chart and Nurse E was busy. So I left and came back in the afternoon, before my radiation appointment. Nurse E gave me a date - Feb 23 - to schedule an appointment with Dr. R, but when I tried to do that, the "scheduler" (the cancer center has people who do nothing but schedule appointments with the various doctors, PAs etc.), the scheduler said that Dr. R is not taking appointments on that date and she'd have to get back to me. Then I went for Zap #2. This time it took all of about 10 minutes. One odd thing I learned is that they zap me on all 4 sides - top, from each side, and bottom, sort of like a rotisserie chicken, and apparently for basically the same reason - to keep the overall impact on all the stuff in there balanced.
No radiation next Monday - Martin Luther King day - which means the current date for finishing up the radiation is February 16 rather than February 15th. Oh well. I am actually thinking about how to take one day off - maybe a Monday - so David and I might fly to Nashville for a short weekend visit with Aunt M, cousin C and cousin D (and D's crazy boyfriend, L - by the way, that's how L referred to himself in his very sweet and thoughtful email to me). I would really like to make that visit during the radiation rather than after, when chemo starts again, or waiting until all of this is supposedly "over." We'll see. I'm checking out fares.
I'm really tired today, likely just due to getting up at 5:30 this morning and busy day at work (plus 2 trips to the hospital). Nice talk with V today, voice messages from T and D and H, checking with me. Today spoke with my daughter - who is very worried about friends in Haiti (she spent 10 days there last year, working with an organization called S.O.I.L). News of Haiti does put things in perspective, doesn't it? Why does a major earthquake fault line run through Haiti, one of the poorest countries in the world (if not the poorest), and not through Lichtenstein or Dubai? Not that I'd wish an earthquake on anyone.
Peace peace peace - this evening first and foremost, in Haiti.
Sunday, January 10, 2010
Sunday morning
I apologize for the REALLY long post last time. I guess I wanted to remember everything about the radiation planning session. No more posts so long, at least I'll try.
Jessie and I got to the park yesterday and again this morning. We've been going a little later than we used to, first because the sun comes up a little later and second because it's been so damn cold. Today we were taking a path to the pond that winds through some tall pine trees and I thought I saw people skating on the big side of the pond. I really did think I saw them, but when we got there just a few minutes later, they were gone. I may actually have hallucinated them. I did notice that the little stream that winds along side of the smaller loop had more ice on it than yesterday, but still had some open water.
The book on great blue herons arrived. It looks to be quite dense and scholarly, and seems to be mostly about a community of herons on the west coast in Canada, but it may have some information in it that will help me understand "my" heron better (assuming "my" heron comes back in the spring). The other books - on ducks and geese and on pond ecology - have yet to arrive (I ordered used copies from individuals so there is no telling how long it will take to receive them).
Meanwhile, I'm zealously protecting the green magic marker lines on my abdomen so that they'll still be there when I start radiation on Tuesday, Jan 12th. I had a lovely long chat with J who was in NYC from his home in CA, visiting family. I went to synagogue services yesterday and chatted with quite a few people; the reactions to my circumstances seem to have dialed down toward normal. Today L and I are going to the movies. All in all, my life proceeds almost normally. Of course, many other people's cancers bring pain and suffering and - god forbid - death every day, including to children, global warming still needs a solution - and no, the fact that we've having a cold winter does NOT disprove the scientific basis for global warming), poverty and greed both abound in their dysfunctional relationship, and the world still cries for peace. I guess, no matter how good a day one has, there is no room for complacency.
Peace.
Jessie and I got to the park yesterday and again this morning. We've been going a little later than we used to, first because the sun comes up a little later and second because it's been so damn cold. Today we were taking a path to the pond that winds through some tall pine trees and I thought I saw people skating on the big side of the pond. I really did think I saw them, but when we got there just a few minutes later, they were gone. I may actually have hallucinated them. I did notice that the little stream that winds along side of the smaller loop had more ice on it than yesterday, but still had some open water.
The book on great blue herons arrived. It looks to be quite dense and scholarly, and seems to be mostly about a community of herons on the west coast in Canada, but it may have some information in it that will help me understand "my" heron better (assuming "my" heron comes back in the spring). The other books - on ducks and geese and on pond ecology - have yet to arrive (I ordered used copies from individuals so there is no telling how long it will take to receive them).
Meanwhile, I'm zealously protecting the green magic marker lines on my abdomen so that they'll still be there when I start radiation on Tuesday, Jan 12th. I had a lovely long chat with J who was in NYC from his home in CA, visiting family. I went to synagogue services yesterday and chatted with quite a few people; the reactions to my circumstances seem to have dialed down toward normal. Today L and I are going to the movies. All in all, my life proceeds almost normally. Of course, many other people's cancers bring pain and suffering and - god forbid - death every day, including to children, global warming still needs a solution - and no, the fact that we've having a cold winter does NOT disprove the scientific basis for global warming), poverty and greed both abound in their dysfunctional relationship, and the world still cries for peace. I guess, no matter how good a day one has, there is no room for complacency.
Peace.
Thursday, January 7, 2010
Thursday afternoon
Okay, my "planning" session with the radiology crew is done. Not too bad. At first glance, I wasn't immediately drawn to Nurse S, who is to be my radiation nurse throughout the 5-week treatment plan. But maybe we got off to a poor start (she came in the waiting room and called my name as "Mrs. C". I'm not now, nor in my view have I ever been, a Mrs. anyone, but anyway...) She took me to an exam room and took blood pressure, pulse rate and temperature (just like they do in chemo). Then she took a complete medical history, asking exactly the same questions (I believe from the same 4 or 5 page form) that Dr. R had asked me when I started chemo. I mentioned this to Nurse S - isn't the information I provided 1 floor up in the chemo section of the Cancer Center available to the Radiation section? Apparently not. Remember, this isn't sharing medical info on a patient between different hospitals, this is sharing medical information between 2 floors of the same hospital! Unbelievable.
Then Nurse S took me to another small waiting room and went to find out if I needed to change out of my clothes into a hospital gown. She returned with the answer that I did not, but I did leave my purse and coat in a locker, took the key (on a 10-inch plastic board) with me, and went with 2 very young, very sweet radiation techs named S and K, and along the way we ran into Dr. VR as well. They took me to a room with a CT scanner in it and did a formal identification thing that was sort of interesting. I had to say my full name and birth date (questions I am very very used to), and tell them what part of my body was going to be treated with radiation (gee, let's see....) and then they took a digital photo of my face (for ID purposes they told me). Then they explained what they were going to do and I had to sign a(nother) consent form.
I lay down on a table or gurney-like thing, my head closer to the CT scanner, first pulling down my slacks and underwear enough to expose my abdomen, which they covered with a sheet. They placed a triangular foam pillow under my knees, and then another foam block (maybe 2 x 8 x 8 inches) between my ankles, which I think they actually strapped to the table, I'm not sure (I guess it is very important to the measurements they were making that I not move and my body be positioned just so.) They offered, and I accepted, this interesting blue foam oval ring that I held in my hands over my chest, the purpose of which was to help me keep my hands and arms still during the measurements. Then they left the room and the CT scan took place. I just closed my eyes and tried to do breathing meditation. It didn't take all that long.
Once the scan was finished, the room lights were turned down, the table/gurney came out of the CT scanner and I could see that there were a bunch of those red laser lights projecting lines on my abdomen, telling them where to put the magic marker lines on my abdomen). They lowered the sheet and drew the lines where the laser indicated, using GREEN magic marker and then they made 3 tiny tattoo dots on me - one on each side of my abdomen on each hip and one in the middle of my abdomen just above the pubic area. These, they were careful to tell me, are "permanent". (Actually, one of the techs also spilled some of the ink they used for the tattoos in a blotch on my abdomen, which they tried to wipe off later. Not sure if the remaining blotch is also permanent.) Finally, they took more digital photos of me to document the exact position I was in on the table, from each side and from the foot of the table. (Probably the draggiest part of this radiation stuff is the fact that I am supposed to be careful not to wash off the magic marker lines, not scrub them, not use soap on them, and not even take baths or at least not take anything but a "quick bath" - isn't a quick bath a contradiction in terms? Showers are okay, as long as I don't scrub my abdomen.)
That was basically it. Dr. VR wrote a letter to my employer to ask that I be given a parking place during the 5 weeks of radiation so I can drive to work, and then drive to the Cancer Center for treatment and then home, rather than having to take the bus, which might require that I walk some distance after the treatments to get the bus home. I don't know if the company/HR will agree to the request. I guess I'll find out. The techs also gave me a plastic card with a bar code on it that I am to scan in a laser device at the front desk each day when I arrive for treatment, and then when the light turns green, I can just go back for the treatment rather than having to actually check in. (Once nice thing I learned is that even for the actual radiation treatments, I won't have to change my clothes; I'll be able to do the same thing I did today - keep my clothes on and just roll down my pants so the magic marker lines and tattoo dots are visible. That's nice; there's something dehumanizing about having to take your clothes off, no matter how nice everyone is about it - after all, everyone being nice is wearing his or her clothes while you're not.)
My first radiation treatment in next Tuesday, 1/12, at 3:00 pm. Then my regular radiation appointment will be at 3:30 pm. Assuming I miss no radiation treatments during the 5-week treatment plan, I should be done with radiation on February 16th. Assuming a couple of weeks off after radiation and before chemo (not sure about that), and assuming 6 weeks of chemo (3 sessions, each 3 weeks apart), I would be done done by the middle of April. That sounds so damn far away! Oh well... one step at a time.
Nurse S said that some patients think of radiation as a "vacation from chemo". I'm not sure I'd say that. There is a trade off. Chemo is intense but over in a day and then you're out of the Cancer Center, back at home and/or at work, yes dealing with side effects, etc., but not going through "treatment". At least from the perspective of this side of the radiation treatments, radiation seems like a slog, affecting your life on a daily basis week after week, just down to dealing with getting there every day for five weeks. Oh well...
So that's the news of the day. In the meantime, while waiting to start radiation and for reading material during radiation, I have ordered books to keep me thinking and learning about the park and its wildlife during these long, cold and dreary winter months. Specifically I ordered a book on pond ecology and life, a book on ducks and geese (no kidding - I'm going to find out about that laughing duck) and finally what looks to be a lovely (and thorough) book on great blue herons. When spring comes to the park, the ice on the pond melts, the grass springs up again and the trees bud and bloom, I'll know a little something about these creatures when they return.
Meantime... peace.
Then Nurse S took me to another small waiting room and went to find out if I needed to change out of my clothes into a hospital gown. She returned with the answer that I did not, but I did leave my purse and coat in a locker, took the key (on a 10-inch plastic board) with me, and went with 2 very young, very sweet radiation techs named S and K, and along the way we ran into Dr. VR as well. They took me to a room with a CT scanner in it and did a formal identification thing that was sort of interesting. I had to say my full name and birth date (questions I am very very used to), and tell them what part of my body was going to be treated with radiation (gee, let's see....) and then they took a digital photo of my face (for ID purposes they told me). Then they explained what they were going to do and I had to sign a(nother) consent form.
I lay down on a table or gurney-like thing, my head closer to the CT scanner, first pulling down my slacks and underwear enough to expose my abdomen, which they covered with a sheet. They placed a triangular foam pillow under my knees, and then another foam block (maybe 2 x 8 x 8 inches) between my ankles, which I think they actually strapped to the table, I'm not sure (I guess it is very important to the measurements they were making that I not move and my body be positioned just so.) They offered, and I accepted, this interesting blue foam oval ring that I held in my hands over my chest, the purpose of which was to help me keep my hands and arms still during the measurements. Then they left the room and the CT scan took place. I just closed my eyes and tried to do breathing meditation. It didn't take all that long.
Once the scan was finished, the room lights were turned down, the table/gurney came out of the CT scanner and I could see that there were a bunch of those red laser lights projecting lines on my abdomen, telling them where to put the magic marker lines on my abdomen). They lowered the sheet and drew the lines where the laser indicated, using GREEN magic marker and then they made 3 tiny tattoo dots on me - one on each side of my abdomen on each hip and one in the middle of my abdomen just above the pubic area. These, they were careful to tell me, are "permanent". (Actually, one of the techs also spilled some of the ink they used for the tattoos in a blotch on my abdomen, which they tried to wipe off later. Not sure if the remaining blotch is also permanent.) Finally, they took more digital photos of me to document the exact position I was in on the table, from each side and from the foot of the table. (Probably the draggiest part of this radiation stuff is the fact that I am supposed to be careful not to wash off the magic marker lines, not scrub them, not use soap on them, and not even take baths or at least not take anything but a "quick bath" - isn't a quick bath a contradiction in terms? Showers are okay, as long as I don't scrub my abdomen.)
That was basically it. Dr. VR wrote a letter to my employer to ask that I be given a parking place during the 5 weeks of radiation so I can drive to work, and then drive to the Cancer Center for treatment and then home, rather than having to take the bus, which might require that I walk some distance after the treatments to get the bus home. I don't know if the company/HR will agree to the request. I guess I'll find out. The techs also gave me a plastic card with a bar code on it that I am to scan in a laser device at the front desk each day when I arrive for treatment, and then when the light turns green, I can just go back for the treatment rather than having to actually check in. (Once nice thing I learned is that even for the actual radiation treatments, I won't have to change my clothes; I'll be able to do the same thing I did today - keep my clothes on and just roll down my pants so the magic marker lines and tattoo dots are visible. That's nice; there's something dehumanizing about having to take your clothes off, no matter how nice everyone is about it - after all, everyone being nice is wearing his or her clothes while you're not.)
My first radiation treatment in next Tuesday, 1/12, at 3:00 pm. Then my regular radiation appointment will be at 3:30 pm. Assuming I miss no radiation treatments during the 5-week treatment plan, I should be done with radiation on February 16th. Assuming a couple of weeks off after radiation and before chemo (not sure about that), and assuming 6 weeks of chemo (3 sessions, each 3 weeks apart), I would be done done by the middle of April. That sounds so damn far away! Oh well... one step at a time.
Nurse S said that some patients think of radiation as a "vacation from chemo". I'm not sure I'd say that. There is a trade off. Chemo is intense but over in a day and then you're out of the Cancer Center, back at home and/or at work, yes dealing with side effects, etc., but not going through "treatment". At least from the perspective of this side of the radiation treatments, radiation seems like a slog, affecting your life on a daily basis week after week, just down to dealing with getting there every day for five weeks. Oh well...
So that's the news of the day. In the meantime, while waiting to start radiation and for reading material during radiation, I have ordered books to keep me thinking and learning about the park and its wildlife during these long, cold and dreary winter months. Specifically I ordered a book on pond ecology and life, a book on ducks and geese (no kidding - I'm going to find out about that laughing duck) and finally what looks to be a lovely (and thorough) book on great blue herons. When spring comes to the park, the ice on the pond melts, the grass springs up again and the trees bud and bloom, I'll know a little something about these creatures when they return.
Meantime... peace.
Sunday, January 3, 2010
Sunday night
Finally - Jessie and I made it to the park this morning. Perhaps not the optimum day to go. It was about 12-14 degrees (without the wind chill and the wind was really blowing) and snowing lightly. The good thing about that was that when we arrived, the park was empty of other people. The bad thing - it was f****ing cold They had spread salt on the roads inside the park and poor Jessie got salt in her foot pads. She hates that. To avoid the salt on the roads and paths, we had to walk in the snow, which was okay except I worried about icy patches under the new snow. It did look pristine. And it was completely silent, and apparently empty of wildlife. Except a few birds calling, and the omnipresent squirrels. And us. The pond was not only covered with ice, but the ice lay under a coverlet of snow. It was beautiful. To call it an invigorating walk would be .. I guess accurate ... once my numb fingers thawed, I guess they were invigorated.
I had a good weekend, feeling better every day. When I went for the blood work, I asked Nurse E about taking the B vitamins and magnesium. She said to continue doing so, at least until I go in on the 13th to see Dr. R's PA. This Thursday - the 7th - I have my "planning" session for the radiation therapy. I am to have a CT scan - so they know where everything that is still left in my abdomen is located, and then also I think get a few "dots" tattooed on me. There was some other stuff Dr. VR told me about magic marker lines that they would put on my abdomen that I should not try to scrub off, but which would eventually wear off - I think. To tell the truth, they gave me a little print out of info about radiation and I stuck it in the plastic folder with the other cancer info and haven't looked at it again. (At that point I still had 2 more chemo sessions to go and I just wasn't ready to learn more details about radiation.) I guess I need to get it out and read it.
I've been thinking a little bit about what it means to "have cancer" or "have had cancer," but not a lot. I recognize that the knowledge of it weighs on me, but more like clouds high up in the sky forecasting weather to come, not bringing today's weather. Meaning it's something I need to think about and face at some point. What it will mean when I have finished the "treatment protocol" and go back to living a "normal" life, normal life but with a difference, with the knowledge that I have HAD cancer and the big whammy: the cancer could come back. I am not ready to really think about that yet. But still, on days like today, when I feel basically okay, no surgery or chemo side effects dogging my heels, the next treatment still a week away, and only my poor bald head to flag my circumstances, it is tempting to imagine, for a second, it is all behind me and I am normal again. Except I will never be normal again in that way. Dr. M said I'd see him every 3 months for at least 2 years. That is every 90 days. Dr. R mentioned having me go for genetic counseling - because 3 of my cousin C's 4 daughter's have had cancer as well as my mother (breast cancer twice, although that's not what she ultimately died of). Okay, that's enough thinking about that.
This week will be my first 5-day week at 3/4 time - 6 hours a day. If the radiation planning session goes as I expect, next week radiation will start. Right now I feel ready for it. Let's see how I feel when I read that printed material.
Peace.
I had a good weekend, feeling better every day. When I went for the blood work, I asked Nurse E about taking the B vitamins and magnesium. She said to continue doing so, at least until I go in on the 13th to see Dr. R's PA. This Thursday - the 7th - I have my "planning" session for the radiation therapy. I am to have a CT scan - so they know where everything that is still left in my abdomen is located, and then also I think get a few "dots" tattooed on me. There was some other stuff Dr. VR told me about magic marker lines that they would put on my abdomen that I should not try to scrub off, but which would eventually wear off - I think. To tell the truth, they gave me a little print out of info about radiation and I stuck it in the plastic folder with the other cancer info and haven't looked at it again. (At that point I still had 2 more chemo sessions to go and I just wasn't ready to learn more details about radiation.) I guess I need to get it out and read it.
I've been thinking a little bit about what it means to "have cancer" or "have had cancer," but not a lot. I recognize that the knowledge of it weighs on me, but more like clouds high up in the sky forecasting weather to come, not bringing today's weather. Meaning it's something I need to think about and face at some point. What it will mean when I have finished the "treatment protocol" and go back to living a "normal" life, normal life but with a difference, with the knowledge that I have HAD cancer and the big whammy: the cancer could come back. I am not ready to really think about that yet. But still, on days like today, when I feel basically okay, no surgery or chemo side effects dogging my heels, the next treatment still a week away, and only my poor bald head to flag my circumstances, it is tempting to imagine, for a second, it is all behind me and I am normal again. Except I will never be normal again in that way. Dr. M said I'd see him every 3 months for at least 2 years. That is every 90 days. Dr. R mentioned having me go for genetic counseling - because 3 of my cousin C's 4 daughter's have had cancer as well as my mother (breast cancer twice, although that's not what she ultimately died of). Okay, that's enough thinking about that.
This week will be my first 5-day week at 3/4 time - 6 hours a day. If the radiation planning session goes as I expect, next week radiation will start. Right now I feel ready for it. Let's see how I feel when I read that printed material.
Peace.
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