Chemo went well. Okay, in order:
First - as always - I got weighed. I gained back almost 3 pounds. ( My guess is that's the weight I lost over the horrible weekend of not eating, vomiting and having diarrhea - not real legitimate weight loss. I'm fine with it.) Then blood work. Then meeting with Doctor R, with whom I went over the past 3 weeks since Chemo #1 and told her all the details. I really like her. She was determined that I should not have the horrible experience dealing with taking the necessary drugs -- chemo, anti-nausea and pain pills - and then suffer constipation from those and then suffer worse from the so-called cure for that. So now I'm taking as a prophylactic a much gentler plant-based laxative (took one tonight). She prescribed some sort of awful sweet liquid that I have to "swish and spit" several times a day because she feels I'm developing a slight yeast infection in my mouth, apparently another common side effect. And she wants to hear if I experience any numbness in my hands and feet (I did last time - in 3 fingers and a couple toes on my left side, but it went away after a few days). Apparently this can be serious and even permanent.
Then I had chemo. No surprises - except that I had a another turkey sandwich for lunch and while it was good, fine - it wasn't out of this world as it was last time. It could be that I didn't eat it last time until 2:30 and this time I was included in the first round of lunch serving - at about 12:30.
V drove me to the appointment (oh - before that, my lovely son called me this morning to say hello and send love before the chemo - that was nice). H came and sat with me for a couple of hours from around 10 or 10:30 until noon at least. And David picked me up. I was able to go to the office holiday dinner tonight I did not east like a horse, but i ate well and the food was good - I just skipped the dessert which wasn't particularly inviting, at least to me.
So that was my day. Tomorrow I go in at 2:30 for the NuLasta shot. I'm really really hoping the pain is manageable this time with just Motrin. I want to go to the baby shower for K on Saturday with J and Kim from work.
I'm feeling okay. I'm tired. I think I will sleep very well tonight.
I send love to each of you reading this.
And peace.
Wednesday, December 2, 2009
Tuesday, December 1, 2009
Wednesday morning - pre-Chemo
Just a quick note before I go off for my second chemo. I'm doing okay. I had a good day yesterday - still shedding like a maniac, very little fuzz left up there. I worked my 1/2 day both Monday & Tuesday, Monday in the office, and Tuesday from home - and especially Tuesday was very productive. That felt good. Yesterday I learned that before the Chemo today, I see Dr. R, the medical oncologist. Apparently Nurse E told me this and I missed it. I'll be meeting with Dr. R before every Chemo. I took my Decadron last night at 10:00 (way past my new "normal" bedtime) and at 5:00 am this morning (just slightly earlier than my new "normal" wake up time). My daughter called to check on me yesterday. V is dropping me off at the Cancer Center, H is dropping by to visit with me there after her own doctor's appointment, and David will pick me up. I am feeling well loved and supported.
Tonight is my office holiday dinner. Nurse E thinks I'll be very ready to eat from all the steroids. If nausea stays at bay, I would agree with her.
Now I'm off to find something to eat so I can take my morning magnesium.
All is well with me. Now if we could just have world peace, address global warming, eliminate poverty and aids, and enjoy equality and justice everywhere.
Peace.
Tonight is my office holiday dinner. Nurse E thinks I'll be very ready to eat from all the steroids. If nausea stays at bay, I would agree with her.
Now I'm off to find something to eat so I can take my morning magnesium.
All is well with me. Now if we could just have world peace, address global warming, eliminate poverty and aids, and enjoy equality and justice everywhere.
Peace.
Tuesday 2:39 AM
Trying to stay honest here so when I look back at this experience, I'll remember that everything wasn't roses and sunshine all the time.
It's the middle of the night. I woke up and am having a hard time going back to sleep. Of course, I fell asleep on the couch between 9:30 and 10:00 p.m., woke up about midnight, got in bed, slept again, so I've already slept 5 or more hour. I'm certainly not in any physical pain or even discomfort, and no terrible specific thoughts or fears are suddenly weighing on me - just general malaise, about losing my hair, about the next chemo and potential side effects. I'd say half of the buzz cut fuzz I had on Friday has now fallen out; I'm shedding short grey hairs like pine needles fall from a dead Christmas tree. My skull is left with what looks like a kind of fuzzy greyish coating, not really "hair." (By the way, going to work was fine; my "haircut" was admired by those with whom I shared it.) I also went to Tai Chi on Monday night, and shared with my class my circumstances. I've been in the class with most of the people for almost 2 years; they were very supportive. I told them not to get too fond of my new "hair style" since I'm shedding it rapidly and it will likely be gone the next time I see them.
Basically, everything is okay. I'm just having a little middle-of-the-night angst.
I'm going to get a drink of water and listen to a little music on my iPod.
Peace.
It's the middle of the night. I woke up and am having a hard time going back to sleep. Of course, I fell asleep on the couch between 9:30 and 10:00 p.m., woke up about midnight, got in bed, slept again, so I've already slept 5 or more hour. I'm certainly not in any physical pain or even discomfort, and no terrible specific thoughts or fears are suddenly weighing on me - just general malaise, about losing my hair, about the next chemo and potential side effects. I'd say half of the buzz cut fuzz I had on Friday has now fallen out; I'm shedding short grey hairs like pine needles fall from a dead Christmas tree. My skull is left with what looks like a kind of fuzzy greyish coating, not really "hair." (By the way, going to work was fine; my "haircut" was admired by those with whom I shared it.) I also went to Tai Chi on Monday night, and shared with my class my circumstances. I've been in the class with most of the people for almost 2 years; they were very supportive. I told them not to get too fond of my new "hair style" since I'm shedding it rapidly and it will likely be gone the next time I see them.
Basically, everything is okay. I'm just having a little middle-of-the-night angst.
I'm going to get a drink of water and listen to a little music on my iPod.
Peace.
Sunday, November 29, 2009
Sunday morning
A quiet mostly at-home day yesterday. David and I did go to the movies to see the new end-of-the-world disaster film, 2012. It was - as expected - an end-of-the world disaster film. No surprises. But since for some reason, I've always liked disaster films... It was just nice to get out..
This morning I took Jessie to the park. We walked the front and the back loop. Lots of ducks and some Canadian geese on the pond. I understand this is mating season for ducks (as opposed to spring for most birds). They were kind of quiet today, apart from the one laughing duck. There was also a large flock of what I think are starlings. They were on the ground, pecking at the turning-brown grass. My guess would be around a thousand of them. I had forgotten to write here an incident from a prior visit to the park, last week I think. Jessie and I were coming back to the main entrance of the park from the back loop when I heard a strange sound. Suddenly I realized the sound was coming from above us. A huge, truly gigantic flock (much much larger than today's flock of 1,000) of starlings was circling overhead. They began alighting in trees across the center of the park, each tree holding hundreds and hundreds of them. All of them were calling out to one another - thousands upon thousands of starlings, all calling out. It was an amazing sight (and sound)!
A couple things on my cancer-mind. First, my poor little fuzzy head continues to shed my poor little fuzz. I do think it is less traumatic than having clumps of longer hair fall out. The current fuzz sheddings could pass for Jessie's bristly fur, which she drops regularly in all locations including across the apartment. I have been out several times, but always wearing a cap of some sort (I've worn the green wool cap that V gave me in her care package, and also the soft black knit cap that Aunt M made me - thanks again to both of them!) Tomorrow I have been planning to go into the office. I admit I am nervous about going in now, with my almost-shaved head (but who knows - by tomorrow I could lose most of my fuzz). I am nervous about wearing a hat/cap. I think I'm getting used to myself, but it's harder to deal with how other people may react to me.
Which reminds me - I read an interesting article in the NY Times this morning about a Cancer Center - kind of a patients and family only (no doctors, nurses, etc.) recreation center - at Sloan-Kettering hospital in NYC. Here is a quote about one cancer patient who goes to the center: "He felt comfortable in the center. Among other things, it allowed his cancer to be out front, because it was everywhere in the room. It is those without cancer who felt strange here. Outside of the hospital, Mr. Piepho rarely speaks of his condition, even to close friends. 'I think there’s a certain ethical responsibility about handling cancer,' he said. 'There’s a burden you place on people when you tell them you have it. Here there’s no burden. This particular place is common ground.'”
I do understand the concept of "common ground" with other cancer patients; that's what I felt in the group treatment room at the Cancer Center here. But I'm wondering about his statement that "there's a certain ethical responsibility about handling cancer... a burden you place on people when you tell them you have it". I'm not sure I understand what he means. What is the burden he's referring to? Is it the question of how people will respond to you when they learn you have/had cancer? Admittedly I don't have much experience yet. I'm a cancer newbie, but already I can see that people respond to learning you have cancer in a wide variety of ways. Even among people you know really care about you, reactions vary widely. I wonder if the situation of a person with cancer shares something in common with a person with a physical or mental disability in terms of how a circumstance beyond the control of a person - having cancer or a disability - can result in making other people - even people who care about the person - uncomfortable. Yet the idea that something about who I am that I have no control over - I am a person being treated for cancer - should be something to be kept hidden out of concern about making other people uncomfortable - well I'm not sure I buy that, at least in the abstract. I can understand not wanting to draw attention to it - for example, by wearing a cap/hat to work tomorrow - but in my case, at least, I must admit that my motivation would be to care for my own feelings and not about putting a burden on other people.
I have started to feel a certain knot of tension building in me about my second chemo session - this coming Wednesday. And yet I can't say I'm really dreading it. I think I am sort of looking forward to it in an odd way - to get it over with and mark another one finished.
Anyway, I am off to buy some Legos for my grandson to play with during his visit (in just 2 weeks!) and a couple of other errands.
Peace
This morning I took Jessie to the park. We walked the front and the back loop. Lots of ducks and some Canadian geese on the pond. I understand this is mating season for ducks (as opposed to spring for most birds). They were kind of quiet today, apart from the one laughing duck. There was also a large flock of what I think are starlings. They were on the ground, pecking at the turning-brown grass. My guess would be around a thousand of them. I had forgotten to write here an incident from a prior visit to the park, last week I think. Jessie and I were coming back to the main entrance of the park from the back loop when I heard a strange sound. Suddenly I realized the sound was coming from above us. A huge, truly gigantic flock (much much larger than today's flock of 1,000) of starlings was circling overhead. They began alighting in trees across the center of the park, each tree holding hundreds and hundreds of them. All of them were calling out to one another - thousands upon thousands of starlings, all calling out. It was an amazing sight (and sound)!
A couple things on my cancer-mind. First, my poor little fuzzy head continues to shed my poor little fuzz. I do think it is less traumatic than having clumps of longer hair fall out. The current fuzz sheddings could pass for Jessie's bristly fur, which she drops regularly in all locations including across the apartment. I have been out several times, but always wearing a cap of some sort (I've worn the green wool cap that V gave me in her care package, and also the soft black knit cap that Aunt M made me - thanks again to both of them!) Tomorrow I have been planning to go into the office. I admit I am nervous about going in now, with my almost-shaved head (but who knows - by tomorrow I could lose most of my fuzz). I am nervous about wearing a hat/cap. I think I'm getting used to myself, but it's harder to deal with how other people may react to me.
Which reminds me - I read an interesting article in the NY Times this morning about a Cancer Center - kind of a patients and family only (no doctors, nurses, etc.) recreation center - at Sloan-Kettering hospital in NYC. Here is a quote about one cancer patient who goes to the center: "He felt comfortable in the center. Among other things, it allowed his cancer to be out front, because it was everywhere in the room. It is those without cancer who felt strange here. Outside of the hospital, Mr. Piepho rarely speaks of his condition, even to close friends. 'I think there’s a certain ethical responsibility about handling cancer,' he said. 'There’s a burden you place on people when you tell them you have it. Here there’s no burden. This particular place is common ground.'”
I do understand the concept of "common ground" with other cancer patients; that's what I felt in the group treatment room at the Cancer Center here. But I'm wondering about his statement that "there's a certain ethical responsibility about handling cancer... a burden you place on people when you tell them you have it". I'm not sure I understand what he means. What is the burden he's referring to? Is it the question of how people will respond to you when they learn you have/had cancer? Admittedly I don't have much experience yet. I'm a cancer newbie, but already I can see that people respond to learning you have cancer in a wide variety of ways. Even among people you know really care about you, reactions vary widely. I wonder if the situation of a person with cancer shares something in common with a person with a physical or mental disability in terms of how a circumstance beyond the control of a person - having cancer or a disability - can result in making other people - even people who care about the person - uncomfortable. Yet the idea that something about who I am that I have no control over - I am a person being treated for cancer - should be something to be kept hidden out of concern about making other people uncomfortable - well I'm not sure I buy that, at least in the abstract. I can understand not wanting to draw attention to it - for example, by wearing a cap/hat to work tomorrow - but in my case, at least, I must admit that my motivation would be to care for my own feelings and not about putting a burden on other people.
I have started to feel a certain knot of tension building in me about my second chemo session - this coming Wednesday. And yet I can't say I'm really dreading it. I think I am sort of looking forward to it in an odd way - to get it over with and mark another one finished.
Anyway, I am off to buy some Legos for my grandson to play with during his visit (in just 2 weeks!) and a couple of other errands.
Peace
Friday, November 27, 2009
Friday afternoon
Well, since the blog entry earlier this morning, I called my friend H - who had offered her hair stylist to me to cut my hair off - and H was able to get me an appointment today. So I had my hair cut off. The stylist suggested that rather than shave my head entirely, I leave a little hair. She's done this for other cancer patients, so I trusted her advice. So now I have what is essentially a buzz cut. David said it's like what he got when he joined the Coast Guard. It feels funny, and probably looks funnier. But at least there is some hair up there still. Better than having it fall out in clumps which it was starting to do. Of course H and the stylist complimented me -on the shape of my head, my nice hair line, my small ears, etc. etc. and I guess it doesn't look terrible - my ears don't stick out, my head doesn't appear to have any obvious deformities (bumps, flat places, etc.). But it feels pretty drastic. I wonder how long it will take to get used to it. Probably about the time the fuzz that is left begins to fall out, I'll have gotten use to the fuzz.
I continue to find it so interesting what I am learning about myself. My general approach to my hair for years, decades, has been to have something that is "easy" to deal with. This summer I cut it shorter than I had had it cut since I was in middle school, a true "short" haircut, and I had just begun to get used to that and even like it. But still, there was hair up there. I could feel it on my ears. I could feel it on the back of my neck. On my forehead. I could reach up and touch it with my fingers. And it was like a fence or a wall, a kind of shelter - something to cover me and support me. Without it, I feel so exposed. My face, my self is just sitting out there in the open. Scary. All of which reminds me of a poem I wrote back in high school - which I've always liked (and remembered). In memory of my lost hair I'm going to include it here:
HOUSE OF HAIR
I live inside a house of hair
and no one knows I"m hiding there.
Like golden strands of silken hay,
I do not brush the hair away
that covers my face. Alone, afraid
I stay inside the world I've made.
I see out, they don't see in,
I am behind a wall of thin,
shaking shining strands of hair,
and no one knows I'm hiding there.
Bye hair.
Peace.
I continue to find it so interesting what I am learning about myself. My general approach to my hair for years, decades, has been to have something that is "easy" to deal with. This summer I cut it shorter than I had had it cut since I was in middle school, a true "short" haircut, and I had just begun to get used to that and even like it. But still, there was hair up there. I could feel it on my ears. I could feel it on the back of my neck. On my forehead. I could reach up and touch it with my fingers. And it was like a fence or a wall, a kind of shelter - something to cover me and support me. Without it, I feel so exposed. My face, my self is just sitting out there in the open. Scary. All of which reminds me of a poem I wrote back in high school - which I've always liked (and remembered). In memory of my lost hair I'm going to include it here:
HOUSE OF HAIR
I live inside a house of hair
and no one knows I"m hiding there.
Like golden strands of silken hay,
I do not brush the hair away
that covers my face. Alone, afraid
I stay inside the world I've made.
I see out, they don't see in,
I am behind a wall of thin,
shaking shining strands of hair,
and no one knows I'm hiding there.
Bye hair.
Peace.
Friday morning very early
Happy (Belated) Thanksgiving to each of you who are taking the time to follow this blog. I did not write because I was either busy -- cooking turkey and dressing, making gravy, acorn squash, mashed potatoes -- or vegging in front of the TV watching the Thanksgiving Day Parade, highlights of the national dog show and football. David made cranberry sauce, and his scrumptious walnut cranberry bread. We bought an apple pie. Jessie scored some turkey. It was a delicious meal. David's brother didn't come; he wasn't feeling well. We prepared a meal-to-go and David will take it to him over the next day or so. Kim dropped by late in the day, not to eat, just to visit. I spoke to my son, S, and to Aunt M. A good day.
Cancer-news-wise, my hair is now officially falling out. Just running my fingers through it, I can tell there is less of it. But yesterday for the first time, very gently pulling at it resulted in small clumps, little bitty rats' nests, coming out, It's hard to decide at what point to have it cut or shaved off. I have a certain horror of waking up one morning and having a big bald spot somewhere on my head and finding a BIG clump of hair in the bed with me. At the same time, David is right. At this particular moment, it still looks more or less normal - even if I can tell it's different and changing rapidly now. But how rapidly? Can it wait until Monday afternoon? I'm planning to go in to the office on Monday morning. Do I want to risk going in on Monday and trailng little baby rats' nests of hair around the office after me like Hansel and Gretel's crumbs? (Where's Laurence? Oh, just follow the little clumps of her hair. You'll find her.) It's amazing what you learn about yourself from this process. When Doctor R and Nurse E both brought up hair loss as a side effect, I didn't exactly pooh pooh it, but I really thought it wouldn't be that big a deal for me. It's not as if I have had long flowing silky locks on a day to day basis up until now that chemo is going to rob me of, But now, coming down to the wire, I am discovering it is a more freighted experience than I expected. I think once the hair is really gone, it may get easier. It's just letting go of it. Hmm.... a lesson there, too.
Maybe I'll decide to have it shaved off today -my personal Black Friday. Otherwise, I guess I'll wait until Monday afternoon. I think it comes down to the question of deciding which freaks me out more: Going ahead and having it shaved off now -- or -- the possibility that before I have it shaved off, truly large and obvious clumps will fall out. Don't know yet.
It's time to go take Jessie out. I have to check the weather to see if we should try to go to the park. I'd like to. We'll see.
Peace
Cancer-news-wise, my hair is now officially falling out. Just running my fingers through it, I can tell there is less of it. But yesterday for the first time, very gently pulling at it resulted in small clumps, little bitty rats' nests, coming out, It's hard to decide at what point to have it cut or shaved off. I have a certain horror of waking up one morning and having a big bald spot somewhere on my head and finding a BIG clump of hair in the bed with me. At the same time, David is right. At this particular moment, it still looks more or less normal - even if I can tell it's different and changing rapidly now. But how rapidly? Can it wait until Monday afternoon? I'm planning to go in to the office on Monday morning. Do I want to risk going in on Monday and trailng little baby rats' nests of hair around the office after me like Hansel and Gretel's crumbs? (Where's Laurence? Oh, just follow the little clumps of her hair. You'll find her.) It's amazing what you learn about yourself from this process. When Doctor R and Nurse E both brought up hair loss as a side effect, I didn't exactly pooh pooh it, but I really thought it wouldn't be that big a deal for me. It's not as if I have had long flowing silky locks on a day to day basis up until now that chemo is going to rob me of, But now, coming down to the wire, I am discovering it is a more freighted experience than I expected. I think once the hair is really gone, it may get easier. It's just letting go of it. Hmm.... a lesson there, too.
Maybe I'll decide to have it shaved off today -my personal Black Friday. Otherwise, I guess I'll wait until Monday afternoon. I think it comes down to the question of deciding which freaks me out more: Going ahead and having it shaved off now -- or -- the possibility that before I have it shaved off, truly large and obvious clumps will fall out. Don't know yet.
It's time to go take Jessie out. I have to check the weather to see if we should try to go to the park. I'd like to. We'll see.
Peace
Tuesday, November 24, 2009
Tuesday evening
Today began with a walk in the park with Jessie. The heron was again missing. I am going to imagine her as having arrived in Central America and now enjoying the company of a comely juvenile male heron, long necks twisting together in the tropical night. Beats sitting on a small float in a cold pond full of duck and goose guano in a New England turning to winter.
Today was my second day of working part-time. It went well. I need to get used to the fact that doing everything on my lap top over my DSL connection from home will take longer. It's amazing how spoiled we get; we experience things happening instantaneously and then anything less makes us impatient.
Kim called this afternoon to tell me she had received a letter from the disability insurance company saying my leave had been "suspended". I reached the disability insurance company and they said their records did show that Doctor M's report had been received but that no determination had yet been made on the extension of the leave and return to part-time work. Kim later talked to someone in HR who said this is common, some sort of timing problem, and I shouldn't worry about it. Later a case manager from the insurance company called me. I told her the issue and she said she would review the paper work and get back to me within an hour, as I understood it with a determination. She never called back. Surprise, surprise! I could freak out over this, but I'm going to do my best to choose not. After all, whatever is going to happen, is going to happen -- whether I freak out or not. Freaking out is tiring. And there are more interesting ways of getting tired.
For example, I went to my Tai Chi class last night, first time since the week before my surgery. It was good. It would be good if I could get back into practicing on the days between the weekly class (I was doing that some before the surgery). Anyway, it was a milestone to be back. I should be able to make next week's class. Not sure about the week after that, since that will be during the days during which the chemo side effects are likely to be most pronounced. We'll see
All in all, an okay day. I bought celery and onions to make dressing for our Thanksgiving turkey who is now thawing in the refrigerator. I was troubled all day by a slight case of diarrhea, but after having experienced the opposite, I am not complaining, just stating a fact. From what I understand, it may be a side effect of the magnesium pills which, amazingly, I have been remembering to take.
I'm looking forward to Thanksgiving. Cooking. Eating The Macy's Thanksgiving Day Parade (I remember taking my kids to it in person when we first moved to New York). Football (yes, actually, football).
Peace.
Today was my second day of working part-time. It went well. I need to get used to the fact that doing everything on my lap top over my DSL connection from home will take longer. It's amazing how spoiled we get; we experience things happening instantaneously and then anything less makes us impatient.
Kim called this afternoon to tell me she had received a letter from the disability insurance company saying my leave had been "suspended". I reached the disability insurance company and they said their records did show that Doctor M's report had been received but that no determination had yet been made on the extension of the leave and return to part-time work. Kim later talked to someone in HR who said this is common, some sort of timing problem, and I shouldn't worry about it. Later a case manager from the insurance company called me. I told her the issue and she said she would review the paper work and get back to me within an hour, as I understood it with a determination. She never called back. Surprise, surprise! I could freak out over this, but I'm going to do my best to choose not. After all, whatever is going to happen, is going to happen -- whether I freak out or not. Freaking out is tiring. And there are more interesting ways of getting tired.
For example, I went to my Tai Chi class last night, first time since the week before my surgery. It was good. It would be good if I could get back into practicing on the days between the weekly class (I was doing that some before the surgery). Anyway, it was a milestone to be back. I should be able to make next week's class. Not sure about the week after that, since that will be during the days during which the chemo side effects are likely to be most pronounced. We'll see
All in all, an okay day. I bought celery and onions to make dressing for our Thanksgiving turkey who is now thawing in the refrigerator. I was troubled all day by a slight case of diarrhea, but after having experienced the opposite, I am not complaining, just stating a fact. From what I understand, it may be a side effect of the magnesium pills which, amazingly, I have been remembering to take.
I'm looking forward to Thanksgiving. Cooking. Eating The Macy's Thanksgiving Day Parade (I remember taking my kids to it in person when we first moved to New York). Football (yes, actually, football).
Peace.
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