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
Sunday, November 29, 2009
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.
Monday, November 23, 2009
Monday early morning
During lunch with my girlfriends, V, S and M yesterday, someone reminded me that just a week ago I was so very sick. It was hard to believe.
No posts over the weekend because it was a good weekend, a quiet weekend, a normal weekend. Cancer-wise, I remembered to take all meds (B vitamins and magnesium) both days. May hair is showing is is made of the same stubborn DNA that comprises the rest of me - it continues to cling to my head. Although V asked if I had gotten it cut again since she took me to get it cut the week after my surgery (3 weeks ago). I have not gotten it cut. It's not falling out yet, but neither is it growing anymore.
Otherwise, I took Jessie to the park on Saturday morning. No heron. I attended synagogue services on Saturday morning. Stayed around the house the rest of the day, odds and ends. Sunday my friend L came over mid-morning and we went to the park (but not Jessie - poor Jessie!). Still no heron. I think she may have migrated. I will miss her, but it makes me happy in a way to think of her migrating. LIkely it means she's going to a location where many other herons winter (oooh, first time I think I have ever used "winter" as a verb!). I like thinking of her in a community of herons somewhere warm, rather than all alone here in the frosty fall awaiting winter's cold. I met V, S and M for lunch on Sunday. A lovely long foursome talk. And later Sunday, David went with me and I bought an office chair to use for working at home.
A wonderfully pedestrian weekend.
Today is my first day working part-time. A milestone,
Peace.
No posts over the weekend because it was a good weekend, a quiet weekend, a normal weekend. Cancer-wise, I remembered to take all meds (B vitamins and magnesium) both days. May hair is showing is is made of the same stubborn DNA that comprises the rest of me - it continues to cling to my head. Although V asked if I had gotten it cut again since she took me to get it cut the week after my surgery (3 weeks ago). I have not gotten it cut. It's not falling out yet, but neither is it growing anymore.
Otherwise, I took Jessie to the park on Saturday morning. No heron. I attended synagogue services on Saturday morning. Stayed around the house the rest of the day, odds and ends. Sunday my friend L came over mid-morning and we went to the park (but not Jessie - poor Jessie!). Still no heron. I think she may have migrated. I will miss her, but it makes me happy in a way to think of her migrating. LIkely it means she's going to a location where many other herons winter (oooh, first time I think I have ever used "winter" as a verb!). I like thinking of her in a community of herons somewhere warm, rather than all alone here in the frosty fall awaiting winter's cold. I met V, S and M for lunch on Sunday. A lovely long foursome talk. And later Sunday, David went with me and I bought an office chair to use for working at home.
A wonderfully pedestrian weekend.
Today is my first day working part-time. A milestone,
Peace.
Friday, November 20, 2009
Friday afternoon
A good quiet ... normal ... day.
It was raining this morning so no park walk for Jessie and me. Instead a long damp (and weirdly unseasonably warm) walk through the neighborhood, followed by damp dog smells in the apartment. I took myself out for coffee and a roll and read a book. I went to Staples and tried out desk chairs. If I am going to work 20 hours a week from home, I need something better than an old straight back wooden chair. Home. The kids sent confirmations of their flights for their mid-December visit. I spoke with Kim about arrangements for beginning work next week. Etc. Etc. In other words - truly a normal day.
In cancer-treatment specific news: Hurrah, I remembered to take the new magnesium capsules at breakfast and - more-or-less - after lunch. My hair continues to stubbornly cling to my head. The 3-color glossy "Chemotherapy and You" booklet says that hair loss typically begins 1-2 weeks after treatment, but nurse E told me 3 weeks. For some reason I have more confidence in nurse E than in that booklet. Still, I try to become prepared for the day/night I reach up and unconsciously touch my hair and a clump comes out. H advised that her hairdresser will be happy to shave my head, give me a buzz cut (perhaps it would be less traumatic for fuzz to fall out than clumps of "hair"?) or whatever I'd like. Recalling the conversation with H about going to her hairdresser, I realized I felt a surge of panic, thinking she meant I should go now, in the next day or so, and I was freaked out. Then I realized that was my own dread. H was just telling me that when/if I want to do this, her hairdresser will be happy to help.
That's it. A good boring day.
Peace.
It was raining this morning so no park walk for Jessie and me. Instead a long damp (and weirdly unseasonably warm) walk through the neighborhood, followed by damp dog smells in the apartment. I took myself out for coffee and a roll and read a book. I went to Staples and tried out desk chairs. If I am going to work 20 hours a week from home, I need something better than an old straight back wooden chair. Home. The kids sent confirmations of their flights for their mid-December visit. I spoke with Kim about arrangements for beginning work next week. Etc. Etc. In other words - truly a normal day.
In cancer-treatment specific news: Hurrah, I remembered to take the new magnesium capsules at breakfast and - more-or-less - after lunch. My hair continues to stubbornly cling to my head. The 3-color glossy "Chemotherapy and You" booklet says that hair loss typically begins 1-2 weeks after treatment, but nurse E told me 3 weeks. For some reason I have more confidence in nurse E than in that booklet. Still, I try to become prepared for the day/night I reach up and unconsciously touch my hair and a clump comes out. H advised that her hairdresser will be happy to shave my head, give me a buzz cut (perhaps it would be less traumatic for fuzz to fall out than clumps of "hair"?) or whatever I'd like. Recalling the conversation with H about going to her hairdresser, I realized I felt a surge of panic, thinking she meant I should go now, in the next day or so, and I was freaked out. Then I realized that was my own dread. H was just telling me that when/if I want to do this, her hairdresser will be happy to help.
That's it. A good boring day.
Peace.
Thursday, November 19, 2009
Thursday night
A nice normal start to the day: Jessie and I went to the park, walked both loops. I didn't see the heron, but I have chosen not worry about that.
Today was blood count day. I can't say I was really worried about it, more curious to see what it involved. I arrived and was weighed - I think they weigh you every time you're there. I learned that I have lost 5 pounds since the first chemo treatment, and a total of 12 pounds since the day of the surgery. I certainly don't mind, although if weight loss continued in a linear progression over the course of the entire 20+ weeks of treatment, it could be problematic. I doubt that will happen. And nurse E didn't even mention it as a concern, so...
They drew my blood, and then I waited. Then I was taken by a nursing assistant to the group chemo room. There my pulse, blood pressure and temp were taken (all fine). Eventually nurse E came and talked with me about my experiences over the past week. She had suggestions about a gentler plant-based laxative. I told her about the slight numbness in 3 fingers of my left hand; she didn't seem worried, but told me to keep taking my B vitamins. Eventually my blood counts came in. They were all fine, very good in fact. One category, I had 13.2 and the bottom range of "acceptable" would have been .8. Quite a difference. Good red cell count. Good white cell count (due to the NuLasta).. Good platelets (but I knew that would be okay; over the past couple years I've donated platelets and was able to do a double or triple due to my high platelet count). The only unknown was magnesium level; I guess it takes longer to get that reading. Nurse E said she'd call me later with those results. If it was too low, I might have to come in one day next week for an IV magnesium infusion. If slightly low, I'd have to take magnesium tablets.
One interesting thing was spending about an hour in the group chemo room. It was good. There was spirit. There was camaraderie. Not evenly among everyone there, but still. (Most everyone in the room - about 8 patients - were nurse E's charges, which I think was part of it). I realized that if I am in the group room next time, that will be fine. Maybe I've adjusted some, taken a first good stride toward acceptance, but it was good to find myself among people I know are in my shoes, and I in theirs. And of course, I realized that of those in that room, many are in shoes far less hopeful and harder to wear than my own.
That was the morning. The rest of the day was good. I cleaned up my home "office" a little bit. Did some grocery shopping. Went to the post office to mail some letters and my brother J's birthday present. As I was leaving the PO, nurse E called; turns out my magnesium was just slightly low, so I bought the mag pills and now have to take those 3 times a day. That makes 10 pills a day on a regular basis--okay, all vitamins/minerals, but I am not a keen (or experienced) pill taker.
Other news - I think both my kids and my grandson will be coming to visit in mid-December. They're coordinating and I'm waiting to hear final dates.
It's supposed to rain tomorrow. That's okay. It's been a good day.
Peace.
Today was blood count day. I can't say I was really worried about it, more curious to see what it involved. I arrived and was weighed - I think they weigh you every time you're there. I learned that I have lost 5 pounds since the first chemo treatment, and a total of 12 pounds since the day of the surgery. I certainly don't mind, although if weight loss continued in a linear progression over the course of the entire 20+ weeks of treatment, it could be problematic. I doubt that will happen. And nurse E didn't even mention it as a concern, so...
They drew my blood, and then I waited. Then I was taken by a nursing assistant to the group chemo room. There my pulse, blood pressure and temp were taken (all fine). Eventually nurse E came and talked with me about my experiences over the past week. She had suggestions about a gentler plant-based laxative. I told her about the slight numbness in 3 fingers of my left hand; she didn't seem worried, but told me to keep taking my B vitamins. Eventually my blood counts came in. They were all fine, very good in fact. One category, I had 13.2 and the bottom range of "acceptable" would have been .8. Quite a difference. Good red cell count. Good white cell count (due to the NuLasta).. Good platelets (but I knew that would be okay; over the past couple years I've donated platelets and was able to do a double or triple due to my high platelet count). The only unknown was magnesium level; I guess it takes longer to get that reading. Nurse E said she'd call me later with those results. If it was too low, I might have to come in one day next week for an IV magnesium infusion. If slightly low, I'd have to take magnesium tablets.
One interesting thing was spending about an hour in the group chemo room. It was good. There was spirit. There was camaraderie. Not evenly among everyone there, but still. (Most everyone in the room - about 8 patients - were nurse E's charges, which I think was part of it). I realized that if I am in the group room next time, that will be fine. Maybe I've adjusted some, taken a first good stride toward acceptance, but it was good to find myself among people I know are in my shoes, and I in theirs. And of course, I realized that of those in that room, many are in shoes far less hopeful and harder to wear than my own.
That was the morning. The rest of the day was good. I cleaned up my home "office" a little bit. Did some grocery shopping. Went to the post office to mail some letters and my brother J's birthday present. As I was leaving the PO, nurse E called; turns out my magnesium was just slightly low, so I bought the mag pills and now have to take those 3 times a day. That makes 10 pills a day on a regular basis--okay, all vitamins/minerals, but I am not a keen (or experienced) pill taker.
Other news - I think both my kids and my grandson will be coming to visit in mid-December. They're coordinating and I'm waiting to hear final dates.
It's supposed to rain tomorrow. That's okay. It's been a good day.
Peace.
Wednesday, November 18, 2009
Wednesday morning
Feeling better today. Jessie and I walked both loops in the park. A quiet day. Crisp. The heron was hunched down in her new usual spot.
Today I need to check with the disability insurance company and make sure things are set up for me to start work half-time next Monday. Also I'm going to try to do some cleaning up - my kids are coming, so perhaps I feel that old nesting instinct stirring. Actually things are wildly out of control around here; David and I have both been distracted for a while.
Today is one week anniversary of first chemo. Hurrah. Tomorrow is first blood count day. My fingers are crossed.
I'm well.
Peace.
Today I need to check with the disability insurance company and make sure things are set up for me to start work half-time next Monday. Also I'm going to try to do some cleaning up - my kids are coming, so perhaps I feel that old nesting instinct stirring. Actually things are wildly out of control around here; David and I have both been distracted for a while.
Today is one week anniversary of first chemo. Hurrah. Tomorrow is first blood count day. My fingers are crossed.
I'm well.
Peace.
Tuesday, November 17, 2009
Tuesday afternoon
Hello. The sun is shining again. I did get up this morning and take Jessie to the park for our walk. In the end, I cut it a little shorter than usual. I found I was still a little weak, probably the side effect of the fasting, vomiting, diarrhea-filled weekend. But it was a crisp fall morning. When we first arrived, I didn't see the heron. We walked the back loop, which is our usual route. By the time we finished that, I was feeling fatigued. Normally I would do the front loop and rest on a bench in the Eddy Rock Garden, my favorite place. But I wasn't feeling up to the second loop. So I sat on a bench by the pond, something I rarely do. It was a little later than usual - perhaps 7:00 am. The pond seemed very quiet. Still. Empty. Nothing moved. So we sat in the sun. Then one little brown duck flew in and landed, and squawked up a storm. Then another. Then 4 Canadian geese landed on the far side of the pond. Suddenly I saw motion here and there. What I had thought was emptiness and stillness, was quiet water with ducks gliding through it. I still didn't see the heron, but I decided not to worry. I watched the ducks and the geese spread out over the pond. One duck in particular laughed like a hyena, I kid you not. One single loud guttural "He" followed by a series of falling "he he he he he he he he" notes. A laughing duck. It actually made me laugh. I decided not to do the front loop but to walk around the pond itself, a slightly shorter path and perhaps more interesting to Jessie. As we turned toward the north side of the pond, the sun moved to my right shoulder and suddenly I could see the heron, out on the small float in the middle of the main part of the pond. The sun's glare had hidden her before. But there she was, all alone. So different than the community of ducks and geese. Tall. Grey-green. Looking all hunched over. I wondered where she sleeps. Has she built a nest? Perhaps in one of the tall pines that stand on the larger of the two little islands in the middle of the pond? I didn't linger to wonder long - I was feeling tired and we walked back to the car and came home.
As far as how I'm doing overall, physically and emotionally, last night I think I hit a first (albeit small) wall. I should have known, I guess. There was a hint in what Dr. M said when David and I met with him to get the treatment recommendations (that seems a long time ago now, doesn't it?). I remember him saying that the chemo's effectiveness PEAKED about 10 days after the treatment. I have only now reached day 6. Six measly days. Not even 1 full week out of the 20 or more weeks this "treatment" will continue. And guess what - I discovered I don't like it! I had some time this morning between when I woke up at 5:30 and when I took Jessie to the park, to stew in a little bitter self-pity juice. Yes, I am recovering from the weekend bout of laxative-related vomiting and cramps, etc., but last night I realized for the first time that I was now feeling the effects of the actual chemo drugs. Tiredness, dog (sorry Jessie) tiredness and real changes in how food tastes. I look at a plate of food with anticipation, eat 3 or 4 bites and find I don't want any more. Heartburn (so far dealt with by Tums). Very slight numbness in my fingertips - which I believe is a serious side effect that I'm supposed to report (I missed the B-vitamins on Sunday because of the vomiting and those are supposed to counter that side effect). Between last night and this morning, I guess I came up against the fact that I I have reached only the cusp of understanding what all this is going to mean, how this is going to affect me. Only six days have gone by! How is it going to be in 60 days? 90 days? How will I deal with radiation? With more chemo after radiation? I guess I thought that I had started chemo this time from a relative position of health Before all this started, I wasn't feeling sick; I felt well. When I got through the immediate aftermath of the first chemo without the stereotypical side effects - vomiting, etc. - I guess I thought somehow I would be different. Not me. I wouldn't fall prey to the same maladies as the rest of the world of cancer patients - at least not yet. I thought I had bypassed the chemo's side-effects, but they hadn't even gotten started yet. Not only was I being unrealistic, but I learned I was still in some denial about the whole experience.
Well the day has picked me up, starting with getting back to the park. I'm feeling physically stronger. My kids are both trying to make arrangements to come for visits in December (my son bringing my grandson). My friend J from work made by hand and sent to me a very very soft deep pink angora/wool cap, which she says I'll look gorgeous in and - if not (J is a realist, one of the things I really like about her) - it will certainly keep my bald head warm (hair not yet falling out, by the way). Yesterday I received a beautiful fruit basket from a work colleague, R, and his wife P. So thoughtful. My aunt M and cousin C sent a beautiful card with even more loving thoughts written by each. Friends are staying in touch by email, phone, comments here. I am only on day 6 post-chemo, and the gifts of love and caring that people are showering on me are piling up. How lucky I am. So lucky.
Peace
As far as how I'm doing overall, physically and emotionally, last night I think I hit a first (albeit small) wall. I should have known, I guess. There was a hint in what Dr. M said when David and I met with him to get the treatment recommendations (that seems a long time ago now, doesn't it?). I remember him saying that the chemo's effectiveness PEAKED about 10 days after the treatment. I have only now reached day 6. Six measly days. Not even 1 full week out of the 20 or more weeks this "treatment" will continue. And guess what - I discovered I don't like it! I had some time this morning between when I woke up at 5:30 and when I took Jessie to the park, to stew in a little bitter self-pity juice. Yes, I am recovering from the weekend bout of laxative-related vomiting and cramps, etc., but last night I realized for the first time that I was now feeling the effects of the actual chemo drugs. Tiredness, dog (sorry Jessie) tiredness and real changes in how food tastes. I look at a plate of food with anticipation, eat 3 or 4 bites and find I don't want any more. Heartburn (so far dealt with by Tums). Very slight numbness in my fingertips - which I believe is a serious side effect that I'm supposed to report (I missed the B-vitamins on Sunday because of the vomiting and those are supposed to counter that side effect). Between last night and this morning, I guess I came up against the fact that I I have reached only the cusp of understanding what all this is going to mean, how this is going to affect me. Only six days have gone by! How is it going to be in 60 days? 90 days? How will I deal with radiation? With more chemo after radiation? I guess I thought that I had started chemo this time from a relative position of health Before all this started, I wasn't feeling sick; I felt well. When I got through the immediate aftermath of the first chemo without the stereotypical side effects - vomiting, etc. - I guess I thought somehow I would be different. Not me. I wouldn't fall prey to the same maladies as the rest of the world of cancer patients - at least not yet. I thought I had bypassed the chemo's side-effects, but they hadn't even gotten started yet. Not only was I being unrealistic, but I learned I was still in some denial about the whole experience.
Well the day has picked me up, starting with getting back to the park. I'm feeling physically stronger. My kids are both trying to make arrangements to come for visits in December (my son bringing my grandson). My friend J from work made by hand and sent to me a very very soft deep pink angora/wool cap, which she says I'll look gorgeous in and - if not (J is a realist, one of the things I really like about her) - it will certainly keep my bald head warm (hair not yet falling out, by the way). Yesterday I received a beautiful fruit basket from a work colleague, R, and his wife P. So thoughtful. My aunt M and cousin C sent a beautiful card with even more loving thoughts written by each. Friends are staying in touch by email, phone, comments here. I am only on day 6 post-chemo, and the gifts of love and caring that people are showering on me are piling up. How lucky I am. So lucky.
Peace
Monday, November 16, 2009
Monday morning
Well, I'm back after a rough weekend. Sorry if the regularity of my prior postings followed by a 2 day gap caused any of you, my sweet family and friends, to worry. I'm okay.
To pick up from Friday afternoon's post, Friday evening the predicted bone/joint pain side effect of the NuLasta shot began kicking in. I took a Motrin and that helped some, but when I went to bed, the pain seemed to be increasing a lot and I really dreaded not getting any sleep, so about 10 pm I took a Percocet. As a result I slept well, some discomfort but it definitely took the edge off the real deep bone pain. The problem with the Percocet - as I guess everyone in the world other than I already knew - is that it causes constipation. I was already well down that road, likely as a result of the chemo drugs generally and the Compizine I took on Wed night for nausea. So by Saturday I was suffering big time from constipation. The weather was rainy, so I didn't take Jessie to the park in the morning. It wasn't too bad a day; I was uncomfortable, residual bone/joint aches/pain, increasingly bloated feeling, but nothing terrible. But as the day went along, the constipation plagued me more and more. By that evening, I was really worried about it. I ended up calling the oncologist on call at the hospital on Saturday night, and she told me I could take a laxative; in fact, to start with 1 pill, if that didn't work, take another, and another up to 4 pills total. So I took 1 pill before bed; another one when I was still tossing and turning 3 hours later; I slept some and took another one at 6 am. I guess I over did it.
The result was that on Sunday I began the day able to use the bathroom one time, and that was it, and only with much effort. Meanwhile, my insides felt like they were being torn up. And to top it off, I starting vomiting (a reminder that this is to be an uncensored - well, almost uncensored - blog). As vomiting goes, it wasn't terrible. I hadn't eaten much on Saturday - afraid of being stopped up - and I ate nothing at all on Sunday, so there wasn't much to come up. It actually did make me feel better. I spent the entire day on the couch clutching a big blue bucket or leaning over it. David was here and caring for me, while also rebuilding his "new" bike. It was comforting to hear the sounds he made has he clanked wrenches, and pulled wheels and did other stuff. But he was always there for me, too. The worst part was that I felt weaker and weaker; I did try to drink water and soda. I was worried about becoming dehydrated.
By late yesterday afternoon, I actually started to feel a little better, well enough that I asked David to make me a piece of toast. It took me an hour to eat that one piece of toast and I couldn't quite finish it. But it seemed to mark a turning point. No more vomiting after that. (I think the vomiting was the result of some reaction to the laxative, nothing else.) I began to feel just slightly alive and aware of things through the evening. David heated some chicken soup and I ate a little broth. That helped, too, I think. I went to bed feeling very very weak but much better. I tossed some, but mostly slept through.
I woke up - surprise surprise - with diarrhea, but to tell the truth, that was a real relief. It's gotten better over the morning. I'm trying to get my strength back by eating - yogurt, toast and some scrambled eggs so far - and drinking fluids.
What gets me about the whole experience is that it didn't even seem to have to do directly with the chemo, only indirectly - NuLasta, side effect pain, pain killer, side effect constipation, laxative, side effects vomiting, cramps, and eventually diarrhea- and the 18 hours of this has left me feeling so incredibly weak and depleted. But worse than the physical feelings, is a feeling of vulnerability. This is ALL new to me. I've never taken pain killers or dealt with their side effects. I've never taken laxatives and have no way to judge their impact on me. I feel like I wasted some of the days I should have been feeling "good" (relatively) dealing with this whole physical cul d'sac - and that pisses me off. I want to own every single good day. I know there will inevitably be bad days, bad days truly tied to the chemo and radiation. Why rush into that state? Soon enough it will be here to be dealt with.
So for today, my goal is to get my strength back and put the weekend behind me. I hope to feel strong enough to take Jessie to the park tomorrow morning and find out what the heron has been up to without my watchful eye.
Peace.
To pick up from Friday afternoon's post, Friday evening the predicted bone/joint pain side effect of the NuLasta shot began kicking in. I took a Motrin and that helped some, but when I went to bed, the pain seemed to be increasing a lot and I really dreaded not getting any sleep, so about 10 pm I took a Percocet. As a result I slept well, some discomfort but it definitely took the edge off the real deep bone pain. The problem with the Percocet - as I guess everyone in the world other than I already knew - is that it causes constipation. I was already well down that road, likely as a result of the chemo drugs generally and the Compizine I took on Wed night for nausea. So by Saturday I was suffering big time from constipation. The weather was rainy, so I didn't take Jessie to the park in the morning. It wasn't too bad a day; I was uncomfortable, residual bone/joint aches/pain, increasingly bloated feeling, but nothing terrible. But as the day went along, the constipation plagued me more and more. By that evening, I was really worried about it. I ended up calling the oncologist on call at the hospital on Saturday night, and she told me I could take a laxative; in fact, to start with 1 pill, if that didn't work, take another, and another up to 4 pills total. So I took 1 pill before bed; another one when I was still tossing and turning 3 hours later; I slept some and took another one at 6 am. I guess I over did it.
The result was that on Sunday I began the day able to use the bathroom one time, and that was it, and only with much effort. Meanwhile, my insides felt like they were being torn up. And to top it off, I starting vomiting (a reminder that this is to be an uncensored - well, almost uncensored - blog). As vomiting goes, it wasn't terrible. I hadn't eaten much on Saturday - afraid of being stopped up - and I ate nothing at all on Sunday, so there wasn't much to come up. It actually did make me feel better. I spent the entire day on the couch clutching a big blue bucket or leaning over it. David was here and caring for me, while also rebuilding his "new" bike. It was comforting to hear the sounds he made has he clanked wrenches, and pulled wheels and did other stuff. But he was always there for me, too. The worst part was that I felt weaker and weaker; I did try to drink water and soda. I was worried about becoming dehydrated.
By late yesterday afternoon, I actually started to feel a little better, well enough that I asked David to make me a piece of toast. It took me an hour to eat that one piece of toast and I couldn't quite finish it. But it seemed to mark a turning point. No more vomiting after that. (I think the vomiting was the result of some reaction to the laxative, nothing else.) I began to feel just slightly alive and aware of things through the evening. David heated some chicken soup and I ate a little broth. That helped, too, I think. I went to bed feeling very very weak but much better. I tossed some, but mostly slept through.
I woke up - surprise surprise - with diarrhea, but to tell the truth, that was a real relief. It's gotten better over the morning. I'm trying to get my strength back by eating - yogurt, toast and some scrambled eggs so far - and drinking fluids.
What gets me about the whole experience is that it didn't even seem to have to do directly with the chemo, only indirectly - NuLasta, side effect pain, pain killer, side effect constipation, laxative, side effects vomiting, cramps, and eventually diarrhea- and the 18 hours of this has left me feeling so incredibly weak and depleted. But worse than the physical feelings, is a feeling of vulnerability. This is ALL new to me. I've never taken pain killers or dealt with their side effects. I've never taken laxatives and have no way to judge their impact on me. I feel like I wasted some of the days I should have been feeling "good" (relatively) dealing with this whole physical cul d'sac - and that pisses me off. I want to own every single good day. I know there will inevitably be bad days, bad days truly tied to the chemo and radiation. Why rush into that state? Soon enough it will be here to be dealt with.
So for today, my goal is to get my strength back and put the weekend behind me. I hope to feel strong enough to take Jessie to the park tomorrow morning and find out what the heron has been up to without my watchful eye.
Peace.
Friday, November 13, 2009
Friday afternoon
Well, in the end I got out of bed last night and spent time here adding a post, and then hunkered down on the couch and read for a couple hours and ended up back in bed about 4:00 am. Then David came home, early. I was able to go back to sleep and slept until 7:30, late for me. But I think the interrupted sleep - 5 hours on the couch and 3 in bed - wiped me out a little. I haven't done much today. I didn't take Jessie to the park because it's cold and overcast and it was too late to get there and have a good walk and get home and eat something before I had to take the Emend ($100/anti nausea) and steroid pills. So we went for a walk in the neighborhood, then I got coffee and had breakfast and took my pills. So far no side effects from the NuLasta shot that I can pin down. I mean I feel achy in my hip joints and shoulders, but that could be 5 hours sleeping on the couch and the overcast weather or general age and decrepitude.
Apart from reading (I'm re-reading "In the Country of Illness" by Robert Lipsyte; I learned about this book from H. a woman I met through my ex-husband S, who was in his cancer support group; it was incredibly helpful to me then as a caregiver; now I am reading it from the perspective of a cancer patient - sobering; one interesting thing is how far treatment standards seem to have come since the book was written - about 10 years ago I think), I spent most of the day on the phone - calling the disability insurance carrier several times, and being called back by them eventually; calling my employer's employee assistance unit and being called back by them, calling Kim and talking to her about all this (and other stuff), calling Dr. M to try to speak to his office manager who handles the paperwork for disability claims (she had left for the day; I was told to talk to her on Monday). So many details, requirements, forms, questions, restrictions, rules, inquiries, hand-offs from person to person. I mean I am feeling pretty well and had some difficulty dealing with it all. I can't imagine what it would be like for someone really in pain or otherwise dealing with significant physical problems (like how would you talk on the phone, take calls, answer questions, if you had to park yourself over the toilet to throw up all day?) At any rate, it appears the process has been started by which I may go back to work part-time next Thursday, from home (although getting approved to work from home longer time as part of short-term disability appears more complicated; well - one thing at a time).
Now we're waiting for UPS to deliver the "new" bike David ordered on eBay, a vintage Raleigh, which he will begin anew the process of making his own. It is supposedly in the area, and to be delivered today.
Since I brought up H above, as having given my ex-husband S, and me, the book I mentioned, I want to say something more about H - may she rest in peace. She like S was a retired teacher, originally from NY or NJ, I forget, relocated to Atlanta like S. They met in the support group. She was older than he; in her late 60's when we met her I think. She wrote poetry. She was caring and kind. After the first chemo protocol given to S gave him TB rather than curing his bladder cancer, he had to undergo a major operation in which they removed his bladder and built a new one from a piece of intestine. He was in intensive care for 7 or 10 days and in the hospital at least 2 weeks. And every single day he was in the hospital over that time, he received a card in the mail from H. Sometimes with a separate note, sometimes just a card with a brief message - kind or funny, some times a poem would be enclosed - but a card arrived for him every one of the days he was in the hospital. I will never forget how much that meant to S. I was there every day, of course, and others visited. But something about H taking the time to write to him daily - that really touched him, and in turn, me. H. was in remission at that time, but sometime during the next 18 months of S's follow up chemo and radiation treatments, her cancer returned and she died. She was a wonderful person; I feel lucky to have met her - may her memory be a blessing to her family and to all whose paths crossed hers.
Peace.
Apart from reading (I'm re-reading "In the Country of Illness" by Robert Lipsyte; I learned about this book from H. a woman I met through my ex-husband S, who was in his cancer support group; it was incredibly helpful to me then as a caregiver; now I am reading it from the perspective of a cancer patient - sobering; one interesting thing is how far treatment standards seem to have come since the book was written - about 10 years ago I think), I spent most of the day on the phone - calling the disability insurance carrier several times, and being called back by them eventually; calling my employer's employee assistance unit and being called back by them, calling Kim and talking to her about all this (and other stuff), calling Dr. M to try to speak to his office manager who handles the paperwork for disability claims (she had left for the day; I was told to talk to her on Monday). So many details, requirements, forms, questions, restrictions, rules, inquiries, hand-offs from person to person. I mean I am feeling pretty well and had some difficulty dealing with it all. I can't imagine what it would be like for someone really in pain or otherwise dealing with significant physical problems (like how would you talk on the phone, take calls, answer questions, if you had to park yourself over the toilet to throw up all day?) At any rate, it appears the process has been started by which I may go back to work part-time next Thursday, from home (although getting approved to work from home longer time as part of short-term disability appears more complicated; well - one thing at a time).
Now we're waiting for UPS to deliver the "new" bike David ordered on eBay, a vintage Raleigh, which he will begin anew the process of making his own. It is supposedly in the area, and to be delivered today.
Since I brought up H above, as having given my ex-husband S, and me, the book I mentioned, I want to say something more about H - may she rest in peace. She like S was a retired teacher, originally from NY or NJ, I forget, relocated to Atlanta like S. They met in the support group. She was older than he; in her late 60's when we met her I think. She wrote poetry. She was caring and kind. After the first chemo protocol given to S gave him TB rather than curing his bladder cancer, he had to undergo a major operation in which they removed his bladder and built a new one from a piece of intestine. He was in intensive care for 7 or 10 days and in the hospital at least 2 weeks. And every single day he was in the hospital over that time, he received a card in the mail from H. Sometimes with a separate note, sometimes just a card with a brief message - kind or funny, some times a poem would be enclosed - but a card arrived for him every one of the days he was in the hospital. I will never forget how much that meant to S. I was there every day, of course, and others visited. But something about H taking the time to write to him daily - that really touched him, and in turn, me. H. was in remission at that time, but sometime during the next 18 months of S's follow up chemo and radiation treatments, her cancer returned and she died. She was a wonderful person; I feel lucky to have met her - may her memory be a blessing to her family and to all whose paths crossed hers.
Peace.
Late Thursday/early Friday
I couldn't sleep so I got back up and decided to write about the NuLasta injection, etc. Not to worry - I fell asleep on the couch at around 9:00 pm and slept there until almost 1:00 am, got up and switched to the bed, and got a little restless. Not feeling physically bad and not upset. Just a little restless.
As far as the rest of my day, I had a lovely longish talk with my son, S. We discussed possible timing and arrangements for him to come up for a visit with my grandson, C. My daughter-in-law is in school and likely can't come along - my son is "free" to come at this point because on or around the time I was having my surgery, he was let go from his job (a job he didn't care for and that paid almost nothing; still, there is an element of panic in the recession-filled world of being cut loose). So I'm hoping S and C will come up for 5-6 days, possibly between Thanksgiving and Christmas.
I also got to visit with my new next door neighbor, tiny little rosebud-let JR. I held her for a bit. She is so tiny, but had just been to the doctor and pronounced perfect - actually, I think he said healthy. But I say perfect. I offered to give M. the note she left for me on Sunday night ("Midnight Sunday - my water may have broken. Going to the hospital. M & R") for her baby book/ scrap book. I know some day baby JR will get a kick out of it, especially since she was born only 4 hours later!
I got the shot. In the end, despite multiple kind offers to drive me, go with me, etc., I decided to drive by myself. I think it was good to do that. It seemed a first step toward integrating the "treatment" for cancer into my own individual life, something I deal with myself - of course and thank God, with support from wonderful family and friends - but still (as I think Mary S put it), a journey that on certain levels I must take alone.
The shot itself, not a big deal. Nurse E met me but was busy with another patient in the group treatment room, so nurse B, whom I met on Wed., took over. She first asked me questions about my reaction to the first chemo. I filled her in Then she warned that the NuLasta injection "burned" when it went. Didn't seem much like that to me. I asked when I could expect to feel the side effects - I actually was worried they might start on my drive home. No, no, she laughed, maybe not at all, and most likely not for a couple days. Joint and bone pain. Hips, legs, knees. She said once she had a patient she explained that to and she forgot to tell him the pain could be in his breastbone and when that happened, he thought he was having a heart attack. So she warned me about pain in the breastbone. And that was it. I drove myself home.
I'm planning on calling Dr. M's office tomorrow, and the ESU and disability insurance company tomorrow to discuss going back to work. I had discussed with Dr. M the possibility of going back to work first part-time (1/2 time). I'm thinking I would like to see if he would approve my doing that a week from today (Thursday, Nov. 19th I think). That would mean 5 days of part-time work and then the Thanksgiving break. I think that might work out okay. I've already talked to Kim at work about it. I think I'm ready but am a little nervous about it. I'll write more about it and my feelings after i talk to the aforesaid people tomorrow.
Okay, I'm fading. I think I'm ready - or almost - go back to bed with my Ice Bat. Go ahead, ask me about my Ice Bat!
Peace.
As far as the rest of my day, I had a lovely longish talk with my son, S. We discussed possible timing and arrangements for him to come up for a visit with my grandson, C. My daughter-in-law is in school and likely can't come along - my son is "free" to come at this point because on or around the time I was having my surgery, he was let go from his job (a job he didn't care for and that paid almost nothing; still, there is an element of panic in the recession-filled world of being cut loose). So I'm hoping S and C will come up for 5-6 days, possibly between Thanksgiving and Christmas.
I also got to visit with my new next door neighbor, tiny little rosebud-let JR. I held her for a bit. She is so tiny, but had just been to the doctor and pronounced perfect - actually, I think he said healthy. But I say perfect. I offered to give M. the note she left for me on Sunday night ("Midnight Sunday - my water may have broken. Going to the hospital. M & R") for her baby book/ scrap book. I know some day baby JR will get a kick out of it, especially since she was born only 4 hours later!
I got the shot. In the end, despite multiple kind offers to drive me, go with me, etc., I decided to drive by myself. I think it was good to do that. It seemed a first step toward integrating the "treatment" for cancer into my own individual life, something I deal with myself - of course and thank God, with support from wonderful family and friends - but still (as I think Mary S put it), a journey that on certain levels I must take alone.
The shot itself, not a big deal. Nurse E met me but was busy with another patient in the group treatment room, so nurse B, whom I met on Wed., took over. She first asked me questions about my reaction to the first chemo. I filled her in Then she warned that the NuLasta injection "burned" when it went. Didn't seem much like that to me. I asked when I could expect to feel the side effects - I actually was worried they might start on my drive home. No, no, she laughed, maybe not at all, and most likely not for a couple days. Joint and bone pain. Hips, legs, knees. She said once she had a patient she explained that to and she forgot to tell him the pain could be in his breastbone and when that happened, he thought he was having a heart attack. So she warned me about pain in the breastbone. And that was it. I drove myself home.
I'm planning on calling Dr. M's office tomorrow, and the ESU and disability insurance company tomorrow to discuss going back to work. I had discussed with Dr. M the possibility of going back to work first part-time (1/2 time). I'm thinking I would like to see if he would approve my doing that a week from today (Thursday, Nov. 19th I think). That would mean 5 days of part-time work and then the Thanksgiving break. I think that might work out okay. I've already talked to Kim at work about it. I think I'm ready but am a little nervous about it. I'll write more about it and my feelings after i talk to the aforesaid people tomorrow.
Okay, I'm fading. I think I'm ready - or almost - go back to bed with my Ice Bat. Go ahead, ask me about my Ice Bat!
Peace.
Thursday, November 12, 2009
Thursday morning
Thanks to all who sent anti-nausea spirits to guard me last night. I slept well woke up feeling much better, just a slight momentary wobbliness when I first got out of bed, but it went away quickly. I decided to take Jessie to the park since I'm not sure how I will react to the injection of NuLasta scheduled for this afternoon. The park was as always (especially at 6:30 in the morning) peaceful and peace-giving. The heron was back on her old perch, the small float in the back of the pond. I read a little more about great blue herons and now believe she (still not sure about gender) is an immature / juvenile great blue heron. That explains why she does not yet have the feathery crest features of the adult heron. While Jessie and I passed the pond, 2 separate gaggles of Canadian geese came in for watery landings. The first group landed, and squawked and honked up a storm. A moment or two later, the second group landed. More squawking and honking joined the first group. It sounded like... I don't what.... a big family reunion where people hadn't seen each other in ages It was great.
Now to catch up on cancer-specific news - I have now taken my morning-after treatment meds (Emend and 2 of the steroid pills), plus the B1, B6 and B12 vitamins recommended by nurse E to counter the chemo side effect of tingling/numbness in the fingers and toes. I'm feeling every so slightly shaky, the way you might if you hadn't eaten anything for a while. So I ate my usual yogurt. My sense of taste seems a little affected, sort of a background after taste present in my mouth, but I didn't notice it until I took the meds. I'm wondering if it is associated with the B-vitamins, which weren't coated, just plain tablets, and have a strong odor. I sure did enjoy my morning coffee before Jessie and I sent to the park!
Back to yesterday: I'm going to try to describe as much of yesterday's treatment and my feelings about it as I am able to, so bear with me if this is long (there are only 6 of these treatments scheduled in total, and I can't imagine I'll have as much to say about the others as this one).
Helen and I arrived a little early. I was weighed and had blood drawn. A short wait and we were taken to a private treatment room (Nurse E had said she tries to put first timers in private rooms versus the group treatment room). We waited some more. My blood pressure was taken (120/80 - high for me, but lower than when I met with Dr. R), pulse and temperature. Waited some more. Nurse E came by and met Helen and went over the treatment schedule. She returned with pre-treatment meds. I can't remember them all, but they included 1 or more pills from my stash of the prescribed steroids, one of my $100/pill Emend doses, an alternative to Benedril (which I can't take) to deal with potential allergic reaction to one of the chemo drugs), and some other pills that I failed to ask about. We then waited about an hour for all those meds to start working.
The first chemo drug was the Paclitaxel (which is familiarly if not affectionately referred to as "Taxel") - the one to which a small percentage of patients have extreme allergic reactions. As a result, for the first hour, the IV is released very very slowly with alarms set every 10-15 minutes, for a stop and check. Either Nurse E or a nurse B was in the room with me for most of that hour, a measure I guess of the seriousness of the potential allergic reaction. Nurse B is the shift manager or something like that. I liked her. She has a cool spiky short hair cut and advised me that there is a very good chance my post-chemo hair will grow back in curly. Since I've coveted curly hair my whole life, this is a small something to look forward to (apart from generally putting all this behind us). At any rate, I got through the first hour with no problems and nurse E let the IV run normally and told me it would be 3 more hours.
Helen and I had lovely talks as long as she was able to stay, which was several hours. Then I listened to podcasts on my iPod with the uncomfortable treatment chair ( I have to say it, I feel bad criticizing anything about the cancer center which seems like a good and caring place - but these treatment chairs ... man oh man) reclined. Apparently they came around offering lunch while I was doing this and thought I was asleep. So the first drug finished, and I was hooked up with the second which takes an hour. I got up and peed a couple of times (one restroom is shared by 2 private treatment rooms). I asked about lunch and nurse E found some for me. A plain turkey sandwich on wheat bread, container of applesauce and a slice of Sara Lee pound cake. The turkey sandwich tasted great (I like my sandwiches plain). Later in the day I spoke with V and she told me that when A went through chemo, the steroids they gave him made him ravenous. Likely that's what was going on with me, because I don't think I ever devoured a simple turkey sandwich with as much gusto. David arrived about then; we split the pound cake. The second chemo drug finished. Nurse E went through my post-treatment instructions for meds. We changed my NuLasta appointment from Friday am to Thursday (today) at 3:00 pm. And we left.
When I got home, I was still ravenous. I drank a diet coke and had some chips and then some crackers. My daughter called, and I spoke to V and to J. I had an early dinner of the chicken soup David had made the day before. I rested, napped, and was awakened by a rush of nausea. Once I sat up, it dissipated. But I could hardly keep my eyes open and I really longed to lie down and sleep, but was afraid to. Slight to moderate nausea came and went. Finally, about 8 pm, I gave in and took an anti-nausea tablet nurse E had previously called in for me.
During the treatments themselves, I didn't have a lot of physical (or emotional) reactions. Once or twice I felt a flush come up in my face. I was getting glucose through the IV before the treatment, and as is usual with that, I could feel the coldness of the glucose in my arm. The IV site didn't hurt at all; in fact, nurse E put in the IV so gently that I barely felt it. Emotionally, I felt a little bit all day long as if I were waiting for that proverbial shoe to drop (a cliche brought to mind perhaps by the fact that Helen and I talked shoes for some time). Seriously what I mean is that I kept waiting for something bad to happen - to have something hurt, or to have that extreme or any other allergic reaction, or to see that certain gleam of "uh oh" in the eyes of nurse E or nurse B and know something wasn't right. But none of that happened.
I was thinking about this on my walk in the park this morning, and I realized that my past health/medical experiences haven't prepared me for cancer treatments. This isn't like a big buildup to a surgery, after which there is a period of recovery. This is a long term on-going experience that varies, changes and accumulates over time. Yesterday was just passing through the entry gate to what is going to be a way of life, both during the months of treatment and to a certain extent, even afterwards, with post-treatment follow up appointments for years, likely (if I am lucky, for many, many years).
And during treatment, the new way of life will bring chemo side effects to deal with, which have only lifted a cold little nose and nudged me under the arm, so to speak, to get my attention so far. They have not yet sunk their fangs in me or even nipped me hard (perhaps the side effects of the NuLasta injection will bring that new experience). So far only some fatigue (some of which was "naturally" based on lack of sleep - surprise! surprise!). A little nausea combined with ravenous cravings for food (ha!). B-vitamins based short-term affect on taste. Clearly I'm still a cancer neophyte.
That's it for now. Thanks for bearing through a long post. I think I'll go try to enjoy the day before the NuLasta injection this afternoon.
Peace.
Now to catch up on cancer-specific news - I have now taken my morning-after treatment meds (Emend and 2 of the steroid pills), plus the B1, B6 and B12 vitamins recommended by nurse E to counter the chemo side effect of tingling/numbness in the fingers and toes. I'm feeling every so slightly shaky, the way you might if you hadn't eaten anything for a while. So I ate my usual yogurt. My sense of taste seems a little affected, sort of a background after taste present in my mouth, but I didn't notice it until I took the meds. I'm wondering if it is associated with the B-vitamins, which weren't coated, just plain tablets, and have a strong odor. I sure did enjoy my morning coffee before Jessie and I sent to the park!
Back to yesterday: I'm going to try to describe as much of yesterday's treatment and my feelings about it as I am able to, so bear with me if this is long (there are only 6 of these treatments scheduled in total, and I can't imagine I'll have as much to say about the others as this one).
Helen and I arrived a little early. I was weighed and had blood drawn. A short wait and we were taken to a private treatment room (Nurse E had said she tries to put first timers in private rooms versus the group treatment room). We waited some more. My blood pressure was taken (120/80 - high for me, but lower than when I met with Dr. R), pulse and temperature. Waited some more. Nurse E came by and met Helen and went over the treatment schedule. She returned with pre-treatment meds. I can't remember them all, but they included 1 or more pills from my stash of the prescribed steroids, one of my $100/pill Emend doses, an alternative to Benedril (which I can't take) to deal with potential allergic reaction to one of the chemo drugs), and some other pills that I failed to ask about. We then waited about an hour for all those meds to start working.
The first chemo drug was the Paclitaxel (which is familiarly if not affectionately referred to as "Taxel") - the one to which a small percentage of patients have extreme allergic reactions. As a result, for the first hour, the IV is released very very slowly with alarms set every 10-15 minutes, for a stop and check. Either Nurse E or a nurse B was in the room with me for most of that hour, a measure I guess of the seriousness of the potential allergic reaction. Nurse B is the shift manager or something like that. I liked her. She has a cool spiky short hair cut and advised me that there is a very good chance my post-chemo hair will grow back in curly. Since I've coveted curly hair my whole life, this is a small something to look forward to (apart from generally putting all this behind us). At any rate, I got through the first hour with no problems and nurse E let the IV run normally and told me it would be 3 more hours.
Helen and I had lovely talks as long as she was able to stay, which was several hours. Then I listened to podcasts on my iPod with the uncomfortable treatment chair ( I have to say it, I feel bad criticizing anything about the cancer center which seems like a good and caring place - but these treatment chairs ... man oh man) reclined. Apparently they came around offering lunch while I was doing this and thought I was asleep. So the first drug finished, and I was hooked up with the second which takes an hour. I got up and peed a couple of times (one restroom is shared by 2 private treatment rooms). I asked about lunch and nurse E found some for me. A plain turkey sandwich on wheat bread, container of applesauce and a slice of Sara Lee pound cake. The turkey sandwich tasted great (I like my sandwiches plain). Later in the day I spoke with V and she told me that when A went through chemo, the steroids they gave him made him ravenous. Likely that's what was going on with me, because I don't think I ever devoured a simple turkey sandwich with as much gusto. David arrived about then; we split the pound cake. The second chemo drug finished. Nurse E went through my post-treatment instructions for meds. We changed my NuLasta appointment from Friday am to Thursday (today) at 3:00 pm. And we left.
When I got home, I was still ravenous. I drank a diet coke and had some chips and then some crackers. My daughter called, and I spoke to V and to J. I had an early dinner of the chicken soup David had made the day before. I rested, napped, and was awakened by a rush of nausea. Once I sat up, it dissipated. But I could hardly keep my eyes open and I really longed to lie down and sleep, but was afraid to. Slight to moderate nausea came and went. Finally, about 8 pm, I gave in and took an anti-nausea tablet nurse E had previously called in for me.
During the treatments themselves, I didn't have a lot of physical (or emotional) reactions. Once or twice I felt a flush come up in my face. I was getting glucose through the IV before the treatment, and as is usual with that, I could feel the coldness of the glucose in my arm. The IV site didn't hurt at all; in fact, nurse E put in the IV so gently that I barely felt it. Emotionally, I felt a little bit all day long as if I were waiting for that proverbial shoe to drop (a cliche brought to mind perhaps by the fact that Helen and I talked shoes for some time). Seriously what I mean is that I kept waiting for something bad to happen - to have something hurt, or to have that extreme or any other allergic reaction, or to see that certain gleam of "uh oh" in the eyes of nurse E or nurse B and know something wasn't right. But none of that happened.
I was thinking about this on my walk in the park this morning, and I realized that my past health/medical experiences haven't prepared me for cancer treatments. This isn't like a big buildup to a surgery, after which there is a period of recovery. This is a long term on-going experience that varies, changes and accumulates over time. Yesterday was just passing through the entry gate to what is going to be a way of life, both during the months of treatment and to a certain extent, even afterwards, with post-treatment follow up appointments for years, likely (if I am lucky, for many, many years).
And during treatment, the new way of life will bring chemo side effects to deal with, which have only lifted a cold little nose and nudged me under the arm, so to speak, to get my attention so far. They have not yet sunk their fangs in me or even nipped me hard (perhaps the side effects of the NuLasta injection will bring that new experience). So far only some fatigue (some of which was "naturally" based on lack of sleep - surprise! surprise!). A little nausea combined with ravenous cravings for food (ha!). B-vitamins based short-term affect on taste. Clearly I'm still a cancer neophyte.
That's it for now. Thanks for bearing through a long post. I think I'll go try to enjoy the day before the NuLasta injection this afternoon.
Peace.
Wednesday, November 11, 2009
Wednesday evening - 1 down...
Well, I made it through Chemo #1, thanks to support from Helen, David and the excellent and on the ball nurse E. Now I am very tired - result of not sleeping great and getting up at 5:00 am to take the second load of pre-treatment meds, and then not really being able to go back to sleep. Plus all the supporting meds they gave before the treatment; it seems like 1 common side effect of almost all of them is drowsiness, fatigue, etc. In the last hour or so I've had my first twinges/tweaks of nausea, nothing terrible ... yet. But I went ahead and took the additional anti-nausea med they gave me a presecription for. I'll write more about the whole treatment experience at another time, hopefully tomorrow.
Just as we were pulling into the parking lot at home, my neighbors were arriving with brand new and beautiful little baby JR. She is a peanut, tiny and perfect, and she was sleeping soundly when I saw her (later this afternoon I thought I heard wonderful little protesting little mew-cries from next door - hungry I bet! I had a wonderful care package waiting here for me from V - I am now the owner of 4 new caps, 2 outdoors type caps from V, and 2 indoors caps made by nurse E's aunt or mother, I forget which. I had a good talk with V and J and also had a lovely short chat with my daughter, whom I admire so much for what she's choosing to do with her life, while being so available to be there for me, too. It can't be easy for her.
That's it for now. Thanks to each of you who has written to me, commented here, called, stopped by and been so supportive and loving. I'm going to try to go to bed now. Please send me powerful strong anti-nausea spirits to guard me through the night.
Peace.
Just as we were pulling into the parking lot at home, my neighbors were arriving with brand new and beautiful little baby JR. She is a peanut, tiny and perfect, and she was sleeping soundly when I saw her (later this afternoon I thought I heard wonderful little protesting little mew-cries from next door - hungry I bet! I had a wonderful care package waiting here for me from V - I am now the owner of 4 new caps, 2 outdoors type caps from V, and 2 indoors caps made by nurse E's aunt or mother, I forget which. I had a good talk with V and J and also had a lovely short chat with my daughter, whom I admire so much for what she's choosing to do with her life, while being so available to be there for me, too. It can't be easy for her.
That's it for now. Thanks to each of you who has written to me, commented here, called, stopped by and been so supportive and loving. I'm going to try to go to bed now. Please send me powerful strong anti-nausea spirits to guard me through the night.
Peace.
Tuesday, November 10, 2009
Later Tuesday afternoon
Update - my neighbor M had her baby very early Monday morning, 4:30 am. A girl! 7 pounds. Mother and daughter (and dad, too) all doing well. They are due home tomorrow, mid-day. That gives me a wonderful thing to look forward to after my first chemo session - a new baby girl!
Life rocks!
Life rocks!
Tuesday afternoon
Okay, it's official. I am nervous, scared, anxious and full of dread about tomorrow. Okay, glad we got that out of the way.
Jessie and I saw the heron this morning, still on the ducks' side of the pond. Today he/she was actually wading in the pond, about 4 or 5 feet from the shore. While I watched, he/she began to stretch out his/her neck and very very slowly began leaning over toward the water. I thought, oh, she (I've decided I'm going to call this heron a SHE from now on until I learn otherwise) is going to go for a fish. But instead of shooting her beak into the water after a fish, she kind of flopped over in slow motion and the whole top half of her went under water. Like getting dunked. If she was going for a fish, she's not very good at it. I thought maybe she was taking a little bath (not that I'd want to bathe in that pond - too many ducks and Canadian geese. Ick squared!)
Otherwise, dropped by my office to pick up a couple of things. Went to the grocery store. Read some. Spoke to my daughter which was lovely.
The only significant cancer-related news is that I was finally approved to join an on-line subscription based support group for women with gynocological cancers. I logged on and read the other group members' introductions; sobering. They all seemed to be very strong women with (unfortunately) longer experience dealing with cancer(s) than I. Made me realize again how truly lucky I am. Seems sort of pathetic to be as full of anxiety as I am about my first treatment in the face of their collective experiences and on-going battles. I also realized that while I have really wanted to join this support group, when I did and went to start reviewing the first postings, I saw that I am actually not yet ready to read all the nitty-gritty details of dealing with cancer treatments, side effects, etc. I guess when I start going through that and dealing with those issues myself, then likely I will be looking for advice, support and so on. But it was interesting to learn about myself that I am not yet ready to hear details about other people's hard hard struggles. I'll get there, I'm sure. And hopefully be able to be there as support for others, myself, some day.
Lovely notes from Jon and Cathy. Trying to fix a time to get together with V, M and S - something to look forward to post-first chemo.
Well, I'm actually so nervous that I"m going to stop writing now. Perhaps I'll log in and write more later. Otherwise, the next post will be post-first-chemo. That'll be great!
Peace.
Jessie and I saw the heron this morning, still on the ducks' side of the pond. Today he/she was actually wading in the pond, about 4 or 5 feet from the shore. While I watched, he/she began to stretch out his/her neck and very very slowly began leaning over toward the water. I thought, oh, she (I've decided I'm going to call this heron a SHE from now on until I learn otherwise) is going to go for a fish. But instead of shooting her beak into the water after a fish, she kind of flopped over in slow motion and the whole top half of her went under water. Like getting dunked. If she was going for a fish, she's not very good at it. I thought maybe she was taking a little bath (not that I'd want to bathe in that pond - too many ducks and Canadian geese. Ick squared!)
Otherwise, dropped by my office to pick up a couple of things. Went to the grocery store. Read some. Spoke to my daughter which was lovely.
The only significant cancer-related news is that I was finally approved to join an on-line subscription based support group for women with gynocological cancers. I logged on and read the other group members' introductions; sobering. They all seemed to be very strong women with (unfortunately) longer experience dealing with cancer(s) than I. Made me realize again how truly lucky I am. Seems sort of pathetic to be as full of anxiety as I am about my first treatment in the face of their collective experiences and on-going battles. I also realized that while I have really wanted to join this support group, when I did and went to start reviewing the first postings, I saw that I am actually not yet ready to read all the nitty-gritty details of dealing with cancer treatments, side effects, etc. I guess when I start going through that and dealing with those issues myself, then likely I will be looking for advice, support and so on. But it was interesting to learn about myself that I am not yet ready to hear details about other people's hard hard struggles. I'll get there, I'm sure. And hopefully be able to be there as support for others, myself, some day.
Lovely notes from Jon and Cathy. Trying to fix a time to get together with V, M and S - something to look forward to post-first chemo.
Well, I'm actually so nervous that I"m going to stop writing now. Perhaps I'll log in and write more later. Otherwise, the next post will be post-first-chemo. That'll be great!
Peace.
Monday, November 9, 2009
Monday evening
Back to the park this morning. Saw the heron scratching in short grass beside the pond.
Then I dropped off the big red (and very heavy, very full) Jug O'Pee at the Cancer Center. While waiting for the valet parking service (can you believe it - valet parking for us cancer patients!) I ran into a woman I know from work. I recognized her; I'm not sure she recognized me. She was clearly wearing a wig. When I dropped off the Jug O'Pee in the second floor lab, she was in the second floor blood room, having blood drawn. Obviously she is going through cancer treatment as well. It was a strange experience; I didn't really realize who she was or how I knew her until she had gotten into her car and driven away.
Then I came home and read for a while, and then walked over to the synagogue and attended Rabbi C's funeral service. There were many many people there; family members spoke and several rabbis and congregants. It was a moving service. I knew him only slightly; at the end of the service I realized that I wished I had had the chance to know him better.
At the service an older woman I used to know well when I attended a different synagogue, but haven't seen in 6 or 7 years, happened to be sitting near me. She leaned over with a mask of pity (okay, maybe it was sympathy) on her face and patted my arm. "Is there anything we can do for you, dear? Do you need anything at all? Meals?" I smiled. "No, thank you, I'm fine. Really, I'm fine." I turned away and waited for the service to start. At some point during the service, she slipped out. Funny, how some people's "sympathy" can be the hardest thing of all to bear. Also I was a big confused about how it was that she came to know my situation. It's not that I want the cancer to be a secret, but there are many people in my own congregation that I am much closer to who I havent' had a chance to tell yet, and yet this person knew. I guess it means that the news will get around. I think it might be a universal response to cancer to want to seem to be - and to be treated as - as "normal" as possible for as long as possible. It's one thing to have a disease; it's another thing to BE a disease.
Anyway, that's my day - so far. I"m feeling gradually increasing nervousness about Wednesday. But what can you do? Best news of the day - under our front door this morning was a little note on which our next door neighbor, M, had written "I think my water may have broken; we're on our way to the hospital." M's and R's first baby - they chose NOT to find out if it was going to be a boy or a girl, which I admire. At any rate, we haven't heard from R yet, which could auger a long and hard labor, but I'm hoping just that the baby has been born, and everyone is tired and thrilled, and focused on family. A new life.
How sweet the thought of it.
Peace.
Then I dropped off the big red (and very heavy, very full) Jug O'Pee at the Cancer Center. While waiting for the valet parking service (can you believe it - valet parking for us cancer patients!) I ran into a woman I know from work. I recognized her; I'm not sure she recognized me. She was clearly wearing a wig. When I dropped off the Jug O'Pee in the second floor lab, she was in the second floor blood room, having blood drawn. Obviously she is going through cancer treatment as well. It was a strange experience; I didn't really realize who she was or how I knew her until she had gotten into her car and driven away.
Then I came home and read for a while, and then walked over to the synagogue and attended Rabbi C's funeral service. There were many many people there; family members spoke and several rabbis and congregants. It was a moving service. I knew him only slightly; at the end of the service I realized that I wished I had had the chance to know him better.
At the service an older woman I used to know well when I attended a different synagogue, but haven't seen in 6 or 7 years, happened to be sitting near me. She leaned over with a mask of pity (okay, maybe it was sympathy) on her face and patted my arm. "Is there anything we can do for you, dear? Do you need anything at all? Meals?" I smiled. "No, thank you, I'm fine. Really, I'm fine." I turned away and waited for the service to start. At some point during the service, she slipped out. Funny, how some people's "sympathy" can be the hardest thing of all to bear. Also I was a big confused about how it was that she came to know my situation. It's not that I want the cancer to be a secret, but there are many people in my own congregation that I am much closer to who I havent' had a chance to tell yet, and yet this person knew. I guess it means that the news will get around. I think it might be a universal response to cancer to want to seem to be - and to be treated as - as "normal" as possible for as long as possible. It's one thing to have a disease; it's another thing to BE a disease.
Anyway, that's my day - so far. I"m feeling gradually increasing nervousness about Wednesday. But what can you do? Best news of the day - under our front door this morning was a little note on which our next door neighbor, M, had written "I think my water may have broken; we're on our way to the hospital." M's and R's first baby - they chose NOT to find out if it was going to be a boy or a girl, which I admire. At any rate, we haven't heard from R yet, which could auger a long and hard labor, but I'm hoping just that the baby has been born, and everyone is tired and thrilled, and focused on family. A new life.
How sweet the thought of it.
Peace.
Sunday, November 8, 2009
Sunday evening
Quiet day -- except for one very bad thing completely unconnected with cancer or health - David's bike was stolen last night, right from the hallway outside our door, with us sleeping inside the apartment. And our great watch dog apparently "watched" (or at least listened assuming the thief/thieves made any noise at all). The bike wasn't locked up; it's been there many a day, many a night over the past several years, without a problem. I guess now it's time to start locking everything up. What a drag. And David built this bike, slowly, lovingly over years, buying parts on eBay and improving it gradually until it was perfect. Rats! Double Rats!
Otherwise, it was a quiet day of peeing in the "hat" and collecting in the jug to deliver to the Cancer Center tomorrow. I was nervous about it - which goes to show you that it is possible to be nervous about anything at all. I'm not sure why I was nervous, or what I expected to go wrong: Miss the "hat"? Not pee enough? Pee too much? Pee wrong color? Forget to put the "hat" in the toilet bowl before I sat down? What? Anyway, the day is almost over and my nervousness has proved (so far) unfounded.
I did not take Jessie to the park this morning, probably because of my fear about the pee collection. Again, not sure what I thought would happen. It is true that I have occasionally used the restroom in Starbuck's when I go there to buy a coffee before we go to the park. But not often. So did I think that if I did go to the park this morning, I would have the irresistible urge to pee at Starbuck's and not make it home to pee in the 'hat"? Don't know. Anyway, I took Jessie for a fairly long walk in the neighborhood this morning. Then late this afternoon, when my nerves were more settled, I took her to the park. A walk in the park on a sunny warm Sunday fall afternoon reminded me of why I so prefer to go early in the morning. Saw the heron, sitting on a different small float, leaning his/her long neck over to the water to nab an early dinner, probably small fishes, but I couldn't see.
I spoke with both kids, Aunt M and Carol, which was good and comforting to me. Tomorrow I drop the big red (literally, the plastic container is red) Jug O'Pee off at the Cancer Center in the morning. I may drop in at my office to pick up something I will need - if / when I ever start working from home - or I may wait to do that on Tuesday. I want to attend funeral services at my synagogue tomorrow mid-day for Rabbi C, z"l, who passed away just before the Jewish Sabbath, 89 years old, may his memory be a blessing for his family and for the entire community who will miss him (including me).
I'm thinking I may go to my Tai Chi class tomorrow night. There are only a couple of parts of our form that I probably shouldn't do 2-weeks post surgery, and I can just skip those. Tai Chi always relaxes me, centers me or something equally touchy-feely As of right now, I am feeling pretty good, more or less at peace. Of course, beneath the calm surface of my heart, brain, soul, there are racing currents of emotion - fear, dread, sadness. I don't want to deny them, or ignore them, but I don't want them controlling me either. I want to construct a boat of calmness and peace and ride those emotions in a positive direction.
Thanks to all of you for your continuing emails, calls, comments, prayers.
Otherwise, it was a quiet day of peeing in the "hat" and collecting in the jug to deliver to the Cancer Center tomorrow. I was nervous about it - which goes to show you that it is possible to be nervous about anything at all. I'm not sure why I was nervous, or what I expected to go wrong: Miss the "hat"? Not pee enough? Pee too much? Pee wrong color? Forget to put the "hat" in the toilet bowl before I sat down? What? Anyway, the day is almost over and my nervousness has proved (so far) unfounded.
I did not take Jessie to the park this morning, probably because of my fear about the pee collection. Again, not sure what I thought would happen. It is true that I have occasionally used the restroom in Starbuck's when I go there to buy a coffee before we go to the park. But not often. So did I think that if I did go to the park this morning, I would have the irresistible urge to pee at Starbuck's and not make it home to pee in the 'hat"? Don't know. Anyway, I took Jessie for a fairly long walk in the neighborhood this morning. Then late this afternoon, when my nerves were more settled, I took her to the park. A walk in the park on a sunny warm Sunday fall afternoon reminded me of why I so prefer to go early in the morning. Saw the heron, sitting on a different small float, leaning his/her long neck over to the water to nab an early dinner, probably small fishes, but I couldn't see.
I spoke with both kids, Aunt M and Carol, which was good and comforting to me. Tomorrow I drop the big red (literally, the plastic container is red) Jug O'Pee off at the Cancer Center in the morning. I may drop in at my office to pick up something I will need - if / when I ever start working from home - or I may wait to do that on Tuesday. I want to attend funeral services at my synagogue tomorrow mid-day for Rabbi C, z"l, who passed away just before the Jewish Sabbath, 89 years old, may his memory be a blessing for his family and for the entire community who will miss him (including me).
I'm thinking I may go to my Tai Chi class tomorrow night. There are only a couple of parts of our form that I probably shouldn't do 2-weeks post surgery, and I can just skip those. Tai Chi always relaxes me, centers me or something equally touchy-feely As of right now, I am feeling pretty good, more or less at peace. Of course, beneath the calm surface of my heart, brain, soul, there are racing currents of emotion - fear, dread, sadness. I don't want to deny them, or ignore them, but I don't want them controlling me either. I want to construct a boat of calmness and peace and ride those emotions in a positive direction.
Thanks to all of you for your continuing emails, calls, comments, prayers.
Saturday, November 7, 2009
Saturday morning
The heron is back! We walked all the way around the park and I didn't see him/her on the first pass by the pond. Oh, well, I thought, I guess I'll have to keep an eye out for when he/she returns from his/her winter home. Then as we were getting ready to leave, I thought maybe I would walk around the pond itself, not something I usually do, there is no path and the morning grass can be very wet with dew. But the sun was up and streaming and I thought it wouldn't be too wet and Jessie might like to poke her little black nose in the tall grasses and reeds by the pond's edge. So we started to do that when who should appear but the heron. Not where he/she usually is, but on the other side of the pond, the side "owned" by the ducks who live there year around and the Canadian geese - all of whom were absent this morning. So we stopped and watched the heron for a while. I saw him/her first stretch out that long neck - what I think may be a defensive stand. Then, once he/she no longer sensed danger, the head slipped back down to that big blue/grey body and the neck just disappeared. Interesting how different the bird looks with its neck fully extended as opposed to with its neck completely relaxed. The yellow beak stood out; the grey/blue body blended with the ground, covered with brown/green/grey leaves. Anyway, I am hoping this is one of those hardy individual herons who do not migrate, because the temperature was below freezing last night. Selfishly I hope he/she stays through the winter.
Yesterday: there was so much information given to me by Dr. R and nurse E. that it is hard to know where to start sharing it. The first thing I learned is that the specific type of tumor/cancer I "had" is pretty rare, rare enough that there is not a really well-established set treatment protocol. Dr. R - who said she was at either Sloan Kettering or Dana Farber for a number of years, I forget which - said she had contacted a colleague at one of those places to discuss the treatment protocol. She hadn't yet heard back. She was very open to my seeking a second opinion, if I want, and offered to introduce me to someone at either institution. She also said I could pursue participation in a clinical trial, if one is being offered (I think that was part of why she contacted her colleague, to find out if there is a current clinical trial relating to "my" type of tumor). I'm still thinking about the second opinion issue, but it seems to me that if I trust my doctors and if my doctor is checking with colleagues at other institutions to confirm treatment protocol, then I'm not sure what i"d gain from the second opinion. I know that getting treatment at SK or DF would be very inconvenient. So any way, I'm mulling all that right now.
I will be given 2 drugs as part of chemo: Paclitaxel and Carboplatin. The potential side effects are wide and in some cases extreme. Hair loss (surprise surprise), fatigue, pain including pain in the joints, bone pain, changes in color or texture of fingernails, nail loss, nausea, taste changes, diarrhea, numbness or tingling in hands or toes (this is apparently serious and can be permanent so I'm supposed to tell them right away about this), kidney function, vision and hearing problems, rashes. One drug - I think Carboplatin - can cause serious allergic reactions, right up to and including anaphalaxsis but they will give me other drugs in advance to address this and say they have not "lost one yet" (great! right?) I've saved the best possible side effect for last: one of the drugs - I forget which one - can actually give the patient leukemia - rare, but it has happened. Dr. R told me this - one thing I liked about her is that she is so down-to-earth and tell-it-like-it-is - but also said that in her professional opinion, the benefits of this treatment outweigh the risk. I trust her, but there is some element of emotion there in me that says it is always easier to make such a "professional opinion" if you're not the person bearing the risk. But hey, what do I know - I'm just the patient. What I liked about Dr. R was that she seems absolutely committed to me as the patient, and very optimistic about the point of all this - to cure me completely. Now that I can get into.
To prepare for Chemo #1 on 11/11 I brought home a plastic "hat" that gets placed on the toilet and a big red plastic jug so that I can do a 24-hour pee collection (sorry if I am being too graphic for anyone). I'll do that from Sunday AM to Monday AM and drop off the jug of pee on Monday. I think it helps them gauge the amount of the chemo drugs to use on me. Then Tuesday night I have to take 5 pills of dexamethasone - some sort of steroid I think - at 10 pm, and again 5 more at 5:00 am the morning of the chemo (nurse E stressing that 5:00 am is important and calls for an alarm clock if necessary - probably will be necessary, I'm an early riser but not that early usually). Then I go in on Wed morning and nurse E gives me a bunch of other drugs - some anti nausea meds (which I already have - she called a prescription in; I bring the drugs with me and she gives the the first dose and explains how I am to take the remaining doses when I go home), as well as drugs to address the allergic reaction issue, etc. Then the chemo starts. One drug takes about 3-4 hours to infuse (I think this is the one with the potential allergic reaction issue; nurse E told me they do this one very slowly, especially the first time, to check for the allergic reaction). The other drug takes about an hour. I should be there - assuming no allergic reaction issues - about 6 hours. I come back on Friday morning to get a shot of something or other - I forget the name - a drug that significantly aids in keeping your blood count up, white blood cells I think. Then I come back again, I think toward the end of the following week (mid-cycle in the 21-day treatment cycle) for blood tests to see how my counts are. Then the counts should be building back up for Chemo #2 which is scheduled (assuming counts are good, etc.) for December 2nd.
Hair loss supposedly starts around 3 weeks after the first treatment. Nurse E suggested that some people find it easier to have their head shaved before the hair loss gets really bad and clumps of hair start coming out. I think I'll do that, but I want to figure out where I want to go to have it done. I usually go to one of these walk-in places and I don't think that's who I want shaving my head (nurse E said just to make sure they clean the electric razor well with alcohol before they shave my head.) Speaking of shaved heads, in 1979 I was hit on the head by a cop at a political demonstration. Required 15 or 16 stitches. I had at least a mild concussion (which later led to my developing a mild form of epilepsy, causing fainting spells; that was treated with anti-seizure meds for 4-5 years, after which when I went off the meds, the fainting spells did not re-occur.) Anyway, I'm looking forward to seeing if I have a nice Frankenstein type scar on my naked skull.
I think David is feeling out of the loop somewhat, since he couldn't make the consultation with me. He told me last night he feels like he doesn't know what's going on. I shared much of the above info with him already, and they gave me a big packet of printed materials (including a glossy 3-color booklet called "Chemotherapy and You" - nurse E said there is one factual error in there, it says don't eat on the morning of your chemo; she said I could eat whatever I wanted on the morning of my chemo - ha!)
Okay. That's it. That's enough. That's probably overload for most of you since it was definitely overload for me, hearing it all first hand. But it's the next day, and I'm doing better. David and I are going to try to move my boat-shaped-object from Ben's garage back to our parking lot, store it there either on the trailer or on sawhorses, and cover it well for the winter. Well, David and Ben will be doing to lifting. I'll be exercising my astute powers of supervision.
Love to each of you.
Yesterday: there was so much information given to me by Dr. R and nurse E. that it is hard to know where to start sharing it. The first thing I learned is that the specific type of tumor/cancer I "had" is pretty rare, rare enough that there is not a really well-established set treatment protocol. Dr. R - who said she was at either Sloan Kettering or Dana Farber for a number of years, I forget which - said she had contacted a colleague at one of those places to discuss the treatment protocol. She hadn't yet heard back. She was very open to my seeking a second opinion, if I want, and offered to introduce me to someone at either institution. She also said I could pursue participation in a clinical trial, if one is being offered (I think that was part of why she contacted her colleague, to find out if there is a current clinical trial relating to "my" type of tumor). I'm still thinking about the second opinion issue, but it seems to me that if I trust my doctors and if my doctor is checking with colleagues at other institutions to confirm treatment protocol, then I'm not sure what i"d gain from the second opinion. I know that getting treatment at SK or DF would be very inconvenient. So any way, I'm mulling all that right now.
I will be given 2 drugs as part of chemo: Paclitaxel and Carboplatin. The potential side effects are wide and in some cases extreme. Hair loss (surprise surprise), fatigue, pain including pain in the joints, bone pain, changes in color or texture of fingernails, nail loss, nausea, taste changes, diarrhea, numbness or tingling in hands or toes (this is apparently serious and can be permanent so I'm supposed to tell them right away about this), kidney function, vision and hearing problems, rashes. One drug - I think Carboplatin - can cause serious allergic reactions, right up to and including anaphalaxsis but they will give me other drugs in advance to address this and say they have not "lost one yet" (great! right?) I've saved the best possible side effect for last: one of the drugs - I forget which one - can actually give the patient leukemia - rare, but it has happened. Dr. R told me this - one thing I liked about her is that she is so down-to-earth and tell-it-like-it-is - but also said that in her professional opinion, the benefits of this treatment outweigh the risk. I trust her, but there is some element of emotion there in me that says it is always easier to make such a "professional opinion" if you're not the person bearing the risk. But hey, what do I know - I'm just the patient. What I liked about Dr. R was that she seems absolutely committed to me as the patient, and very optimistic about the point of all this - to cure me completely. Now that I can get into.
To prepare for Chemo #1 on 11/11 I brought home a plastic "hat" that gets placed on the toilet and a big red plastic jug so that I can do a 24-hour pee collection (sorry if I am being too graphic for anyone). I'll do that from Sunday AM to Monday AM and drop off the jug of pee on Monday. I think it helps them gauge the amount of the chemo drugs to use on me. Then Tuesday night I have to take 5 pills of dexamethasone - some sort of steroid I think - at 10 pm, and again 5 more at 5:00 am the morning of the chemo (nurse E stressing that 5:00 am is important and calls for an alarm clock if necessary - probably will be necessary, I'm an early riser but not that early usually). Then I go in on Wed morning and nurse E gives me a bunch of other drugs - some anti nausea meds (which I already have - she called a prescription in; I bring the drugs with me and she gives the the first dose and explains how I am to take the remaining doses when I go home), as well as drugs to address the allergic reaction issue, etc. Then the chemo starts. One drug takes about 3-4 hours to infuse (I think this is the one with the potential allergic reaction issue; nurse E told me they do this one very slowly, especially the first time, to check for the allergic reaction). The other drug takes about an hour. I should be there - assuming no allergic reaction issues - about 6 hours. I come back on Friday morning to get a shot of something or other - I forget the name - a drug that significantly aids in keeping your blood count up, white blood cells I think. Then I come back again, I think toward the end of the following week (mid-cycle in the 21-day treatment cycle) for blood tests to see how my counts are. Then the counts should be building back up for Chemo #2 which is scheduled (assuming counts are good, etc.) for December 2nd.
Hair loss supposedly starts around 3 weeks after the first treatment. Nurse E suggested that some people find it easier to have their head shaved before the hair loss gets really bad and clumps of hair start coming out. I think I'll do that, but I want to figure out where I want to go to have it done. I usually go to one of these walk-in places and I don't think that's who I want shaving my head (nurse E said just to make sure they clean the electric razor well with alcohol before they shave my head.) Speaking of shaved heads, in 1979 I was hit on the head by a cop at a political demonstration. Required 15 or 16 stitches. I had at least a mild concussion (which later led to my developing a mild form of epilepsy, causing fainting spells; that was treated with anti-seizure meds for 4-5 years, after which when I went off the meds, the fainting spells did not re-occur.) Anyway, I'm looking forward to seeing if I have a nice Frankenstein type scar on my naked skull.
I think David is feeling out of the loop somewhat, since he couldn't make the consultation with me. He told me last night he feels like he doesn't know what's going on. I shared much of the above info with him already, and they gave me a big packet of printed materials (including a glossy 3-color booklet called "Chemotherapy and You" - nurse E said there is one factual error in there, it says don't eat on the morning of your chemo; she said I could eat whatever I wanted on the morning of my chemo - ha!)
Okay. That's it. That's enough. That's probably overload for most of you since it was definitely overload for me, hearing it all first hand. But it's the next day, and I'm doing better. David and I are going to try to move my boat-shaped-object from Ben's garage back to our parking lot, store it there either on the trailer or on sawhorses, and cover it well for the winter. Well, David and Ben will be doing to lifting. I'll be exercising my astute powers of supervision.
Love to each of you.
Friday, November 6, 2009
Friday evening
Nice to talk with Ron today, and Kim, and a very funny email from Donna providing a link to an internet list where people with backyard fish ponds discuss ways to deal with pesky great blue herons who, it seems, enjoy dining on expensive koi. Meanwhile, here's what I learned about the migratory habits of great blue herons: "Birds east of the Rocky Mountains in the northern part of their range are migratory and winter in Central America or northern South America. From the southern United States southwards, and on the Pacific coast, they are year-round residents. However their hardiness is such that individuals often remain through cold northern winters, as well." Well, Jessie and my heron would be an "east of the Rocky Mountains" bird, but perhaps it will turn out to be a hardy individual who sticks around through the cold northern winter, I hope so. I've attached a photo that looks a lot like our bird, but isn't.
More chemo factoids tomorrow.
Sleep well.
Friday afternoon
Well, I survived my first visit to the Cancer Center, albeit just a consultation visit - no treatment yet. I liked Dr. R and the oncology nurse, E, assigned to my case. I learned that I have lost 5 pounds (is that how much a uterus, ovaries and tubes weigh?) since my pre-surgery weight. My blood pressure was higher than what is normal for me, but not so high as the first time I went to see Dr. M before the surgery. I'm not going to try to write about all the details of the visit, proposed treatment, side effects, etc. right now - too tired. I'll try to do that tomorrow. The bottom line is that my first chemo is scheduled for next Wednesday, November 11th. If all goes well, the second would be on December 2nd, and the third right before Christmas (not a problem for me and both Dr. R and my nurse, E, are Jewish, as well). I came home with a thick packet of information - everything you didn't really want to know about chemo therapy, its side effects, physical and otherwise - and including a booklet from the American Cancer Society showing various turbans, scarves, hats, bandanas, and wigs. I turned down a "prescription" to buy a wig (which my insurance would have paid for).
I'm feeling okay. I wish I could hug my daughter, get a back rub from my son (and hug him, too) and sit with my grandson on my lap all weekend - and metaphorically speaking, that's what I intend to be doing in my head all weekend.
More tomorrow (or possibly even later tonight).
Peace.
I'm feeling okay. I wish I could hug my daughter, get a back rub from my son (and hug him, too) and sit with my grandson on my lap all weekend - and metaphorically speaking, that's what I intend to be doing in my head all weekend.
More tomorrow (or possibly even later tonight).
Peace.
Friday morning
The great blue heron was gone. Perhaps he/she was just off foraging for breakfast or otherwise occupied. I wish I knew what the heron's migration pattern is. I'll have to look into it. Today's walk was graced instead with another lovely sight - a gaggle of 10 or 12 Canadian geese came flying in low toward the pond just as Jessie and I walked past. They circled once and then as group they landed in the water - splash splash splash splash. It was beautiful.
More later after I've met with Dr. R.
Peace
More later after I've met with Dr. R.
Peace
Thursday, November 5, 2009
Thursday night
I began the day with another walk with Jessie at the park. I'd like to keep doing that as often and as long as I am able to. I saw the great blue heron, but barely, on his perch on the small floating raft-like thing. It was just after dawn and overcast and his/her color faded into the color of the pond and the sun rising behind him/her just showed his/her shadow. At the end of our walk, I sat in the rock garden where I sometimes have tied Jessie to a bench and then practiced my Tai Chi. No Tai Chi today; just sitting on the bench in the sun, thinking about time and seasons, about how green growing things will fade and seem to die back and then revive and burst out again in the spring.
Quiet day today. I did have a call from the Cancer Center where I am to meet with Dr. R tomorrow morning for my "meet-and-greet" in which I am to learn all the gory details about the "treatment" and its side effects. Another slight ... hitch. My cell phone rang. "Hello" I said. A woman said, "this is St. Francis Cancer Center." I said, "Yes," She said, "May I please speak with Laurence." I said, "this is Laurence." "Oh," she said, "you're Laurence? Oh..." Okay, she's just calling with an appointment reminder. But somewhere I hope there is a record that Laurence is the person to be treated for uterine cancer. Not sure how many men in the world have received that diagnosis.
The thing stirring my emotions today is this: worry that Dr. R is going to be pissed at me because I refused to accept the appointment next week, and insisted on one this week. I guess that's displacement. I'm really scared about facing the chemo, but I'm displacing that fear into an irrational outlet - revenge of the MD oncologist for appointment-changing-high-maintenance patient!
I had a lovely chat with V last night. And today I received a wonderful note from my sweet daughter, snail mail no less (we both like snail mail), and a package from my son sending me a dvd with copies of the short films that were included in the film festival he just organized (successfully!)
All in all a good day. Nervous about tomorrow. I'll be going by myself; need to take a notebook and write things down.
Peace.
Quiet day today. I did have a call from the Cancer Center where I am to meet with Dr. R tomorrow morning for my "meet-and-greet" in which I am to learn all the gory details about the "treatment" and its side effects. Another slight ... hitch. My cell phone rang. "Hello" I said. A woman said, "this is St. Francis Cancer Center." I said, "Yes," She said, "May I please speak with Laurence." I said, "this is Laurence." "Oh," she said, "you're Laurence? Oh..." Okay, she's just calling with an appointment reminder. But somewhere I hope there is a record that Laurence is the person to be treated for uterine cancer. Not sure how many men in the world have received that diagnosis.
The thing stirring my emotions today is this: worry that Dr. R is going to be pissed at me because I refused to accept the appointment next week, and insisted on one this week. I guess that's displacement. I'm really scared about facing the chemo, but I'm displacing that fear into an irrational outlet - revenge of the MD oncologist for appointment-changing-high-maintenance patient!
I had a lovely chat with V last night. And today I received a wonderful note from my sweet daughter, snail mail no less (we both like snail mail), and a package from my son sending me a dvd with copies of the short films that were included in the film festival he just organized (successfully!)
All in all a good day. Nervous about tomorrow. I'll be going by myself; need to take a notebook and write things down.
Peace.
Wednesday, November 4, 2009
Wednesday afternoon
Well, a woman from Dr. M's office did call me - about 11:30 this morning, with news that my appointment with the MD oncologist, Dr. R, has been moved up to this Friday morning. That worIks better for me. I'll hear all the gory details about the treatment, its side effects, etc. etc., and then have at least the weekend before the chemo starts, but still should be able to get it started early next week. Still, the woman from Dr. M's office first told me that the appointment would be with a different MD oncologist. She even gave me the other doctor's name - Dr. P. I asked what Dr. P's first name was and she gave it to me. I asked if Dr. M had a problem with my changing from Dr. R to Dr. P - and that seemed to trigger some sort of confusion in the woman. All of a sudden, she apologized and told me, wait - no, I'm sorry, your appointment is still with Dr. R but on Friday.
So what does that mean? If I had written down Dr. P's name and the appointment time and hung up without asking further questions, and then showed up for an appointment with Dr. P, would Dr. P have known about it? Was it really changed to Dr. P? Or was that just error on the part of someone in Dr. M's office or the MD oncology office? It's weird to me that this scientific area - medicine, and oncology specifically - which as a lay person (and a patient) I tend to think of as very detail oriented, precise, careful - seems so hit-or-miss sometimes. Oh, wrong date? Sorry. Oh, wrong doctor? Sorry. In the end, I guess it's okay as long as they have the right diagnosis for the right patient. (Reminds me that when I had surgery on my right breast a few years ago, they put several stickers all over my LEFT breast that read "NO" and (I kid you not) had a frowny face on them. Actually a friend told me today that last week when her young nephew - who is diabetic - was brought to the hospital with a serious head/brain injury (a tree limb fell on his head), despite his family informing the hospital of his diabetes, still somehow the hospital gave him an IV that included sugar (or glucose - at any rate, something he should not have received as a diabetic) for something like 12 hours. It almost killed him. But thank God, he's going to be all right.
Me, too. I'm doing all right. Good walk with Jessie in the park this morning. A second good walk with Helen around the neighborhood. Cleared up the MD oncology meet-and-greet appointment delay. Talked to friends at work. I'm tired, a busy day, but a good one... so far. I'm not done yet!
So what does that mean? If I had written down Dr. P's name and the appointment time and hung up without asking further questions, and then showed up for an appointment with Dr. P, would Dr. P have known about it? Was it really changed to Dr. P? Or was that just error on the part of someone in Dr. M's office or the MD oncology office? It's weird to me that this scientific area - medicine, and oncology specifically - which as a lay person (and a patient) I tend to think of as very detail oriented, precise, careful - seems so hit-or-miss sometimes. Oh, wrong date? Sorry. Oh, wrong doctor? Sorry. In the end, I guess it's okay as long as they have the right diagnosis for the right patient. (Reminds me that when I had surgery on my right breast a few years ago, they put several stickers all over my LEFT breast that read "NO" and (I kid you not) had a frowny face on them. Actually a friend told me today that last week when her young nephew - who is diabetic - was brought to the hospital with a serious head/brain injury (a tree limb fell on his head), despite his family informing the hospital of his diabetes, still somehow the hospital gave him an IV that included sugar (or glucose - at any rate, something he should not have received as a diabetic) for something like 12 hours. It almost killed him. But thank God, he's going to be all right.
Me, too. I'm doing all right. Good walk with Jessie in the park this morning. A second good walk with Helen around the neighborhood. Cleared up the MD oncology meet-and-greet appointment delay. Talked to friends at work. I'm tired, a busy day, but a good one... so far. I'm not done yet!
Tuesday, November 3, 2009
Tuesday afternoon
Someone from the medical oncologist's office called to tell me when my appointment to meet the doctor is scheduled. I was unhappy to learn it is not scheduled until November 11th. I protested, which was for me crossing a boundary in my normal "patient" behavior (generally, whatever the doctor tells me, I just go along with it. I have not historically been a strong advocate for myself as patient.) I protested saying that my doctor, Dr. M, had said the appointment with the MD oncologist would be THIS week, so I could start chemo NEXT week. If I don't even meet her until the 11th, when will chemo start? Oh, she said, you could start treatment the next day. I protested that, too, said I'm not comfortable with that. And I realized I wasn't. What I understood Dr. M to be saying yesterday was that I would have an appointment some time this week to meet the MD oncologist, hear details about the treatment, meet the oncology nurse assigned to my case, etc. And then have a few days before the first chemo took place. But on the proposed schedule I won't know anything more or take any other step forward for more than another full week. And then the chemo could be sprung on me the very next day.
I don't like it and I told her so. She said she would tell the MD oncologist. Then Dr. M's office called to tell me the date in December - the 7th I think - when I am scheduled to meet the radiologist. I told her that based on the schedule being set by the MD oncologist, I won't be anywhere near ready for the radiation treatments on December 7th. I told her the MD oncologist meet-greet is scheduled for Nov 11th and how unhappy I am about the delay. She said she would tell Dr. M and ask him to call me.
I've learned something from this, weird as it seems. First - that while I really am feeling stronger every day, and while I really did feel better after meeting with Dr. M yesterday, there are still deep emotions roiling just under the surface of my mind, my soul, whatever, and feeling "normal" and "hopeful" is a very narrow and winding path I am walking right now. It doesn't take much to push me off the path and into that morass out there, just barely out of sight, full of fear and grief and anger. How fragile is my new and untested hopefulness. I learned I had been counting on the idea that later this week I will learn more about what is to come with the chemo and yet not have to actually face the chemo yet; counting on there being a little more time before I have to face that, and yet not too much time; knowing the sooner it starts, the sooner it will be over. Now, this likely pleasant woman just doing her job calls to tell me about this appointment and I lose my foothold on normalcy and feel the fear, the anger inside me.
Well, let's see what happens, Will Dr. M call me back? Will he limit himself to being appropriately sympathetic? Or will he try to move up the appointment schedule? Will the MD oncologist herself call me? Will the appointment date be moved up sooner, this week? Who knows?
What I have learned is that really it shouldn't be such a big deal. These things happen. The fact that it "got to" me is the main interesting point of today's experiences. I am learning to know myself: "This is my self. This is my self with uterine cancer."
A beautiful fall day, by the way. I'm going to meet Helen for a walk tomorrow. And right now, I'm going to go read about evolution.
Peace.
I don't like it and I told her so. She said she would tell the MD oncologist. Then Dr. M's office called to tell me the date in December - the 7th I think - when I am scheduled to meet the radiologist. I told her that based on the schedule being set by the MD oncologist, I won't be anywhere near ready for the radiation treatments on December 7th. I told her the MD oncologist meet-greet is scheduled for Nov 11th and how unhappy I am about the delay. She said she would tell Dr. M and ask him to call me.
I've learned something from this, weird as it seems. First - that while I really am feeling stronger every day, and while I really did feel better after meeting with Dr. M yesterday, there are still deep emotions roiling just under the surface of my mind, my soul, whatever, and feeling "normal" and "hopeful" is a very narrow and winding path I am walking right now. It doesn't take much to push me off the path and into that morass out there, just barely out of sight, full of fear and grief and anger. How fragile is my new and untested hopefulness. I learned I had been counting on the idea that later this week I will learn more about what is to come with the chemo and yet not have to actually face the chemo yet; counting on there being a little more time before I have to face that, and yet not too much time; knowing the sooner it starts, the sooner it will be over. Now, this likely pleasant woman just doing her job calls to tell me about this appointment and I lose my foothold on normalcy and feel the fear, the anger inside me.
Well, let's see what happens, Will Dr. M call me back? Will he limit himself to being appropriately sympathetic? Or will he try to move up the appointment schedule? Will the MD oncologist herself call me? Will the appointment date be moved up sooner, this week? Who knows?
What I have learned is that really it shouldn't be such a big deal. These things happen. The fact that it "got to" me is the main interesting point of today's experiences. I am learning to know myself: "This is my self. This is my self with uterine cancer."
A beautiful fall day, by the way. I'm going to meet Helen for a walk tomorrow. And right now, I'm going to go read about evolution.
Peace.
Monday, November 2, 2009
Monday evening
I'm tired - it's been a long (and emotional) day, so not sure how many details I'll feel up to trying to remember and post here. But whatever I don't get to tonight, I"ll get to tomorrow.
The day began with another long-ish walk with my dog, Jessie, in the park. A lovely walk - the great blue heron who seems to have moved in to this park chose the moment we walked by to lift from the little float on which he (or she) spends most of his (or her) time, and floated across the pond toward us and alighted on those long legs only a few feet away from us. So ... a nice beginning to the day.
Okay, down to brass tacks. David and I met with the oncologist. In a nutshell, here's the scoop. Apparently 80% of uterine cancers are cancers affecting the uterine lining. My tumor - I had my own tumor, how about that? sounds so personal, so private, proprietary, even possessive, doesn't it? -- MY tumor was (key word there - WAS - no more tumor, bye bye tumor and good riddance) - my tumor was in a different layer of the uterus, I can't remember what it's called, but it is more rare - I think he said 5% of uterine cancers are this type. Also there is some sort of "rate" associated with different tumors, like a slower and a faster rate or something like that, and "my" tumor was determined to be of the "faster" type. Okay, but now for some good news. The good news includes the fact that they feel they removed all of the tumor when they did the hysterectomy, that the lymph nodes did not show signs of being affected. Also the CT scan that was done before my surgery didn't show any other "lit up" organs or whatever. The not as good news is that the tumor itself had grown through the uterine wall or actually, I think the doctor said just right to the outside of the uterine wall. That fact causes them to "stage" -- a whole new meaning in that use of the term "stage" -- my (former) tumor as stage 3a. I guess if it was still INside the uterus completely it would be stage 2. Oh well...
Treatment - some time this week I will meet with the medical oncologist who will actually carry out the treatment. Also I will be assigned and meet an oncology nurse who will be assigned to my case throughout the treatment. The first thing is chemo - 3 chemo sessions, 3 weeks apart. Those will be followed by 5 weeks of radiation (Monday through Friday, weekends off - I assume I will need the days off to rest. He said the radiation is cumulatively very tiring) Then after the 5 weeks of radiation, 3 more chemo sessions, once again 3 weeks between them. The whole thing to take about 4 months. I asked if I could possibly start next week, and that seems possible, but I guess the actual date will have to wait until I meet the medical oncologist.
So, I actually felt much better after the meeting. (By the way, I met the woman who blurted out the treatment news to me and she apologized sincerely, as did the doctor, again.) There is something about knowing what's up vs. imagining the worst and then thinking, oh, even that's not as bad as it could be, it's likely worse that the worst. I guess that's the human brain. Now it just seems like facts to be dealt with. Let's go kill any stray cancer cells that think they still have squatters' rights.
So for all of you who bore through reading all of the foregoing, I am including a little reward for you. A photo of my beautiful grandson on his 3rd birthday, Saturday - October 31st.
And thanks and love from me to each of you.
Monday morning
I had a good day yesterday. Started by taking my dog, Jessie, to the park for a good long-ish walk, which is my "normal" weekend (and any other off-of-work day) routine). Then David and I drove down to the shore. We began at Mystic Seaport, an old familiar friend. It was very empty, which always makes me sad. I love it there and want the seaport to survive and more, thrive. But about the time we were ready to leave, it seemed as if more people were arriving. I like the fact that you can hear many different languages spoken there. Then we went to Ender's Island which is just off Mason's Island between Mystic and Stonington. There is an Episcopal retreeat there, with a small and very plain little chapel looking out on the water, across toward Fisher's Island and Block Island. There is a table across the back of the chapel - which is perhaps 12 x 12 feet - where people come and leave ... things, I don't know what you'd call them. In some cases, little medallions showing saints, I think (I'm Jewish, what do I know from saints?), and also shells, and stones, and sometimes notes. Often prayers for recovery or in memory of somone. There was a note about a young man, from his photo obviously a teenager. I didn't read the note, but did see his picture. It's a peaceful place. David says it is his sacred place. The water was very calm, so that it did remind me of "He leads me beside still waters, He restores my soul."
From there we drove to Watch Hill, RI, just across the CT/RI state line, parked, and walked through the sand dunes to the actual ocean. I sat on a log and breathed the salty air. The cloudy day - literally I'm talking here, not metaphorically - began to clear and the sun came out so the still calm water shone, silvery, glittery.
And then we came home.
And I came home to find so many kind and loving messages from family and friends. What a lucky person I am!
Well, that's it for now. Update promised for later.
From there we drove to Watch Hill, RI, just across the CT/RI state line, parked, and walked through the sand dunes to the actual ocean. I sat on a log and breathed the salty air. The cloudy day - literally I'm talking here, not metaphorically - began to clear and the sun came out so the still calm water shone, silvery, glittery.
And then we came home.
And I came home to find so many kind and loving messages from family and friends. What a lucky person I am!
Well, that's it for now. Update promised for later.
Sunday, November 1, 2009
Sunday Nov 1st
It's Sunday, the day after Cachao (my grandson) turned 3 years old, the morning after Halloween. We actually got a few trick-or-treaters last night. We're going to drive down to the shore later this morning. I want to smell the ocean. We may stop by Mystic Seaport, one of my favorite places since I took sailing classes there a few years ago, and then became a volunteer. Haven't been there much this year; to the extent I've had time and energy, it's been focused on working on my little wooden boat-shaped-object.
My appointment with the oncologist is for 12:30 pm tomorrow. At some point I will post an update about what I learn there - not sure how I'll feel, hearing the details, but I'll definitely share the news when I feel up to it. He told me on Thursday that he wanted to start the treatments in "a couple of weeks" so I'm assuming that next week will still be treatment-free. It seems obvious, but I'm torn between wanting to savor every last day, hour, moment before this "treatment" stuff starts - and wanting to just get on with it. Apart from the general dread of what's involved, I guess the thing on my mind is how I'm going to be able to handle working during the treatment process I expect to talk to the doctor about it tomorrow. My impression so far is that he is pretty conservative about it - not wanting me to go back to work, although it did sound like he might approve my working from home.
Overall I'm feeling pretty good and generally positive this morning. Perhaps I should change the name of this Blog to "I'm Not DONE Yet" because I am not done. There are many many things I want and intend to do with my life. Starting with taking that ride down to the shore to breathe in that salty ocean smell and feel alive.
My appointment with the oncologist is for 12:30 pm tomorrow. At some point I will post an update about what I learn there - not sure how I'll feel, hearing the details, but I'll definitely share the news when I feel up to it. He told me on Thursday that he wanted to start the treatments in "a couple of weeks" so I'm assuming that next week will still be treatment-free. It seems obvious, but I'm torn between wanting to savor every last day, hour, moment before this "treatment" stuff starts - and wanting to just get on with it. Apart from the general dread of what's involved, I guess the thing on my mind is how I'm going to be able to handle working during the treatment process I expect to talk to the doctor about it tomorrow. My impression so far is that he is pretty conservative about it - not wanting me to go back to work, although it did sound like he might approve my working from home.
Overall I'm feeling pretty good and generally positive this morning. Perhaps I should change the name of this Blog to "I'm Not DONE Yet" because I am not done. There are many many things I want and intend to do with my life. Starting with taking that ride down to the shore to breathe in that salty ocean smell and feel alive.
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