Apparently I spoke - or blogged - too soon. Was feeling much better yesterday, especially in the morning when I posted here, but in the afternoon I had another bad diarrhea attack. I gave in and took the Imodium but was kind of wiped out the rest of the day and was afraid to eat much, so I had eggs and toast for dinner. I feel better this morning, but did not get to the park with Jessie this morning. Maybe I"ll try to go at the end of the day, to see the sun setting rather than rising. If I am feeling okay. The thing about the Big D is its 2 prong whammy: 1) it just wipes you out, probably in part from dehydration (I was careful to drink a lot of water after yesterday's episode), and 2) it makes you afraid to eat much, doesn't seem worth it since whatever you take in may just be passing through, so to speak.
Anyway, I hope to get back on track digestively today and be okay by tomorrow (and stay that way) when the zaps start again.
Peace.
Sunday, February 7, 2010
Saturday, February 6, 2010
Saturday morning
Zap #15, #16, #17, and #18 down, 7 zaps to go
Jessie and I got to the park this morning. Cold but not unbearable. We went kind of late for us, about 7:00 am. The sun was already up. Quiet in the park. Walking the east loop, hearing the snow crunch under my boots, feeling the cold, seeing the icy pond surface covered in snow (it's been cold enough that the snow cover on the pond surface hasn't melted), I realized I felt ... happy.
I feel better, and have since Wednesday or Thursday. Dr. VR advised my buying (and taking) Imodium for the Big D, but as early as Sunday and Monday I tried to adjust my diet to stick to low fiber, and it seemed that by Wednesday I was feeling better and by Thursday I could really tell the difference. I had a brief relapse yesterday but not terrible and today I feel well again. So I'm holding the Imodium in reserve.
Thanks to all who lent support during that rough period in particular. J from out west, as always - you're the best, and Crazy L from Music City and G from the old Hood and Helen as always. Thanks, too, to G from GA for sending me the wonderful CD. A good cause and good music. I talked to my son and my grandson this week. That was a high point. My grandson informed me he was "trying to read to Mama." According to my son, what that actually meant was - he was trying to get Mama to read to him, while also watching a DVD, listening to a CD, playing with a new wooden train and doing something or other on the Internet. Whew!
Cancer-wise news, I"m getting to know better the 2 women that I tend to run into at radiation, L and M, both having radiation for breast cancer. Yesterday I heard a little how the radiation has caused burns and sores on their skin. Made me feel lucky as, so far at least, I've had none of that. Sometimes when I finish radiation and I'm back in my car in a small, closed space, I think I can smell the scent of burned flesh - mine - but I think it's a hallucination. I've had no physical sign of any burns or discolorations. (L said she has a place on her breast that is as brown as M is - M is a lovely chocolate African-American). 7 more zaps to go - all of next week, and 2 days of the following week.
I met with Nurse S this week. She said that there is usually a gap of a couple weeks after radiation before starting chemo. I think the only reason she said that is because she knows I want to start chemo sooner and she is a kind of Grinch-person. I know the type; in fact, I've BEEN the type myself, hopefully not any more. Don't let people get their hopes up, always bring up the down side. Not death and doom, just the niggling hard bad side of things. Into hope-dashing on a day-to-day versus life-and-death scale. Icky. Anyway, it's not up to Nurse S - after next Tuesday, she'll be history. It's up to Dr. R, whom I have an appointment to see next Tuesday.
I learned something else about Dr. R - I remember writing here when I first met her, that she told me she had been at Dana Farber or Sloan Kettering before being here in Ct, I couldn't remember which. This week I learned it was Dana Farber. I found out when I mentioned her name to the new person at work, the guy who told me that he had had leukemia many years ago. This week he was telling me about his diagnosis (he was just 28 years old!), the treatment and so on. Turns out he had what was at the time an experimental bone marrow transplant where they use your own bone marrow after treating you to the point where the cancer is down to 2% or something like that. Anyway, he had the experimental marrow transplant at Dana Farber and Dr. R was his doctor. There was another, more senior doctor in charge. Dr. R was a young associate, but she was the one he saw on a regular basis over the many months of the pre, during and post transplant process. He remembers her with deep affection, and it was a real validation of my own sense of Dr. R.
I also asked Dr. M's office to confirm with the disability insurance company that I was able to work full time, and my short-term disability ended on Wednesday (or maybe it was Tuesday, I forget). Anyway, although I'm not changing my hours - which have been 7:00 or 7:15 am to 3:00 pm - which is obviously already more or less "full time" - until the radiation is done, I no longer have to worry about the disability claim. My supervisors have been clear that I can be flexible, as need be, to make doctor's appointments, and so on. So that horrible disability claim business is - hopefully forever - over with.
I'm feeling good. I'm hoping the mega-snow storm isn't causing too much hardship down south of us. I'm hoping that the most advanced industrial and technological countries in the world can figure out how to actually get water and a little food to hungry people - children! - in Haiti after more than 3 weeks! I'll bet you if an earthquake hit Hollywood, the movie stars wouldn't be living under their duvets waiting to get water and rice! Screw racism and capitalism.
Okay, I'm calmer now.
Peace.
Jessie and I got to the park this morning. Cold but not unbearable. We went kind of late for us, about 7:00 am. The sun was already up. Quiet in the park. Walking the east loop, hearing the snow crunch under my boots, feeling the cold, seeing the icy pond surface covered in snow (it's been cold enough that the snow cover on the pond surface hasn't melted), I realized I felt ... happy.
I feel better, and have since Wednesday or Thursday. Dr. VR advised my buying (and taking) Imodium for the Big D, but as early as Sunday and Monday I tried to adjust my diet to stick to low fiber, and it seemed that by Wednesday I was feeling better and by Thursday I could really tell the difference. I had a brief relapse yesterday but not terrible and today I feel well again. So I'm holding the Imodium in reserve.
Thanks to all who lent support during that rough period in particular. J from out west, as always - you're the best, and Crazy L from Music City and G from the old Hood and Helen as always. Thanks, too, to G from GA for sending me the wonderful CD. A good cause and good music. I talked to my son and my grandson this week. That was a high point. My grandson informed me he was "trying to read to Mama." According to my son, what that actually meant was - he was trying to get Mama to read to him, while also watching a DVD, listening to a CD, playing with a new wooden train and doing something or other on the Internet. Whew!
Cancer-wise news, I"m getting to know better the 2 women that I tend to run into at radiation, L and M, both having radiation for breast cancer. Yesterday I heard a little how the radiation has caused burns and sores on their skin. Made me feel lucky as, so far at least, I've had none of that. Sometimes when I finish radiation and I'm back in my car in a small, closed space, I think I can smell the scent of burned flesh - mine - but I think it's a hallucination. I've had no physical sign of any burns or discolorations. (L said she has a place on her breast that is as brown as M is - M is a lovely chocolate African-American). 7 more zaps to go - all of next week, and 2 days of the following week.
I met with Nurse S this week. She said that there is usually a gap of a couple weeks after radiation before starting chemo. I think the only reason she said that is because she knows I want to start chemo sooner and she is a kind of Grinch-person. I know the type; in fact, I've BEEN the type myself, hopefully not any more. Don't let people get their hopes up, always bring up the down side. Not death and doom, just the niggling hard bad side of things. Into hope-dashing on a day-to-day versus life-and-death scale. Icky. Anyway, it's not up to Nurse S - after next Tuesday, she'll be history. It's up to Dr. R, whom I have an appointment to see next Tuesday.
I learned something else about Dr. R - I remember writing here when I first met her, that she told me she had been at Dana Farber or Sloan Kettering before being here in Ct, I couldn't remember which. This week I learned it was Dana Farber. I found out when I mentioned her name to the new person at work, the guy who told me that he had had leukemia many years ago. This week he was telling me about his diagnosis (he was just 28 years old!), the treatment and so on. Turns out he had what was at the time an experimental bone marrow transplant where they use your own bone marrow after treating you to the point where the cancer is down to 2% or something like that. Anyway, he had the experimental marrow transplant at Dana Farber and Dr. R was his doctor. There was another, more senior doctor in charge. Dr. R was a young associate, but she was the one he saw on a regular basis over the many months of the pre, during and post transplant process. He remembers her with deep affection, and it was a real validation of my own sense of Dr. R.
I also asked Dr. M's office to confirm with the disability insurance company that I was able to work full time, and my short-term disability ended on Wednesday (or maybe it was Tuesday, I forget). Anyway, although I'm not changing my hours - which have been 7:00 or 7:15 am to 3:00 pm - which is obviously already more or less "full time" - until the radiation is done, I no longer have to worry about the disability claim. My supervisors have been clear that I can be flexible, as need be, to make doctor's appointments, and so on. So that horrible disability claim business is - hopefully forever - over with.
I'm feeling good. I'm hoping the mega-snow storm isn't causing too much hardship down south of us. I'm hoping that the most advanced industrial and technological countries in the world can figure out how to actually get water and a little food to hungry people - children! - in Haiti after more than 3 weeks! I'll bet you if an earthquake hit Hollywood, the movie stars wouldn't be living under their duvets waiting to get water and rice! Screw racism and capitalism.
Okay, I'm calmer now.
Peace.
Monday, February 1, 2010
Monday evening
Zap # 14 down, 11 zaps to go.
By Friday's zap #13, I was really wiped out and knew I needed the weekend to rest. David and I did go to my synagogue to a dinner Friday night but ended up leaving in the middle of the guest lecturer - it was 8:30 pm and that's about 60 minutes past my collapsing time.
On both Saturday and Sunday mornings Jessie and I had a good walk in the park - very cold, that bone shaking cold, but a good walk. Seemed pretty devoid of wildlife, even the birds seemed subdued and the usually ubiquitous squirrels were nowhere to be seen - to Jessie's immense disappointment. She lives in the unreasonable hope that she will one day catch one of the little critters, wring its little neck and ... and then what? I doubt her dog thoughts go further than that.
Later Saturday morning I met my girlfriends - V, S and M. That was good, although I wasn't feeling great and generally I had a kind of rough weekend. The Big D - diarrhea - appears to have found my address and moved in and made itself at home. For how long, I don't know. This is definitely not the result of suggestions from my doctor and nurse. This is the real thing. It definitely wears you out. I pulled out the sheet on diet that Nurse S - bless her unsympathetic little soul - gave me that gives guidance on low fiber foods vs. high fiber foods. How strange to spend decades teaching yourself to always choose high fiber only to end up not being able to tolerate it. Who thought a "diet" sheet would say that "any cheese" is okay but no raw fruits and vegetables are!
Anyway, I was kind of peaked all weekend and again today at work, although slightly better today, perhaps as a result of trying to steer clear of the "worst" high fiber foods. I am not going to Tai Chi tonight - which I usually love - but I am tired and I want to curl in a ball and lay low like a veg (but only a cooked veg, not raw!)
I'm feeling a little low in general, perhaps in response to hitting the half way mark of the cancer treatment. Supposedly having climbed the hill to this point, it's down hill from here back to "normal" - that's what various people - radiation technicians, Dr. VR, friends - keep reminding me. But I guess the reality of the whole thing is with me right now: Stage IIIA cancer; more chemo; seeing an oncologist every 3 months; more CT scans; on and on. It's never over; it's a changed life.
But ,,. life is good. And every day keeps the sun out a little longer and helps me believe that life is stirring in the cold veins of the trees and the tangled branches of the rhododendron scattered through the park. Somewhere warmer I like to think there is a laughing duck holding court, telling all who will listen about this great park in Connecticut that she's coming back to as soon as the buds burst out.
Peace.
By Friday's zap #13, I was really wiped out and knew I needed the weekend to rest. David and I did go to my synagogue to a dinner Friday night but ended up leaving in the middle of the guest lecturer - it was 8:30 pm and that's about 60 minutes past my collapsing time.
On both Saturday and Sunday mornings Jessie and I had a good walk in the park - very cold, that bone shaking cold, but a good walk. Seemed pretty devoid of wildlife, even the birds seemed subdued and the usually ubiquitous squirrels were nowhere to be seen - to Jessie's immense disappointment. She lives in the unreasonable hope that she will one day catch one of the little critters, wring its little neck and ... and then what? I doubt her dog thoughts go further than that.
Later Saturday morning I met my girlfriends - V, S and M. That was good, although I wasn't feeling great and generally I had a kind of rough weekend. The Big D - diarrhea - appears to have found my address and moved in and made itself at home. For how long, I don't know. This is definitely not the result of suggestions from my doctor and nurse. This is the real thing. It definitely wears you out. I pulled out the sheet on diet that Nurse S - bless her unsympathetic little soul - gave me that gives guidance on low fiber foods vs. high fiber foods. How strange to spend decades teaching yourself to always choose high fiber only to end up not being able to tolerate it. Who thought a "diet" sheet would say that "any cheese" is okay but no raw fruits and vegetables are!
Anyway, I was kind of peaked all weekend and again today at work, although slightly better today, perhaps as a result of trying to steer clear of the "worst" high fiber foods. I am not going to Tai Chi tonight - which I usually love - but I am tired and I want to curl in a ball and lay low like a veg (but only a cooked veg, not raw!)
I'm feeling a little low in general, perhaps in response to hitting the half way mark of the cancer treatment. Supposedly having climbed the hill to this point, it's down hill from here back to "normal" - that's what various people - radiation technicians, Dr. VR, friends - keep reminding me. But I guess the reality of the whole thing is with me right now: Stage IIIA cancer; more chemo; seeing an oncologist every 3 months; more CT scans; on and on. It's never over; it's a changed life.
But ,,. life is good. And every day keeps the sun out a little longer and helps me believe that life is stirring in the cold veins of the trees and the tangled branches of the rhododendron scattered through the park. Somewhere warmer I like to think there is a laughing duck holding court, telling all who will listen about this great park in Connecticut that she's coming back to as soon as the buds burst out.
Peace.
Friday, January 29, 2010
Friday morning
Zap #11 and Zap #12 down, 13 zaps to go
For some reason, Wednesday's radiation treatment wiped me out. I was so tired, I could hardly lift an arm. I think I slept 11 hours. I also had some discomfort in my abdomen, sort of aching in my pelvic bones. They took a bunch of x-rays on Wed. to confirm the line-up for the radiation, and they ended up changing the hatch marks they drew on me (one on each side and one in the middle, where they put the tattoos). They said this was normal, and the change was very small. I was also wiped out again after yesterday's treatment, not quite as bad, but almost. Basically after 7:00 pm, I'm useless. They did blood work yesterday and I should be able to find out the results today. I wonder if my blood counts will reflect the reason for my fatigue.
It's getting colder again and supposed to stay cold for a while. I guess Jessie and my walks in the park this weekend will be chilly affairs. I really need this weekend, to bounce back from this fatigue a little bit. It's depressing to me that after today I will only be half done. I'm trying to hang on to the thought of spring, but it was easier this past week when the temperature hit 57 degrees and I saw a huge flock of Canadian geese grazing in the lawns of St. Joseph's College. Yesterday we got snow, not a lot, but enough to cover the grass everywhere and bring back the look of winter. Last night the feel of winter arrived and iced up everything that had melted. Black ice, dark mood, somewhere under there, optimism sleeping, waiting to be woken again.
Peace.
For some reason, Wednesday's radiation treatment wiped me out. I was so tired, I could hardly lift an arm. I think I slept 11 hours. I also had some discomfort in my abdomen, sort of aching in my pelvic bones. They took a bunch of x-rays on Wed. to confirm the line-up for the radiation, and they ended up changing the hatch marks they drew on me (one on each side and one in the middle, where they put the tattoos). They said this was normal, and the change was very small. I was also wiped out again after yesterday's treatment, not quite as bad, but almost. Basically after 7:00 pm, I'm useless. They did blood work yesterday and I should be able to find out the results today. I wonder if my blood counts will reflect the reason for my fatigue.
It's getting colder again and supposed to stay cold for a while. I guess Jessie and my walks in the park this weekend will be chilly affairs. I really need this weekend, to bounce back from this fatigue a little bit. It's depressing to me that after today I will only be half done. I'm trying to hang on to the thought of spring, but it was easier this past week when the temperature hit 57 degrees and I saw a huge flock of Canadian geese grazing in the lawns of St. Joseph's College. Yesterday we got snow, not a lot, but enough to cover the grass everywhere and bring back the look of winter. Last night the feel of winter arrived and iced up everything that had melted. Black ice, dark mood, somewhere under there, optimism sleeping, waiting to be woken again.
Peace.
Tuesday, January 26, 2010
Tuesday afternoon
Zap #9 and zap #10 down, 15 zaps to go.
I saw Nurse S yesterday; she still leaves me cold. She's not horrible or anything, I just don't "connect" with her. I guess she makes me appreciate all the other nurses, doctors, nurses aides, technicians with whom I have connected. Saw Dr. VR today. Both ask me the same questions over and over: How am I feeling? Any change in my bowel movements? Diarrhea? Any change in bladder (frequent urination is a potential side effect)? Any increase in fatigue? Over and over, to the point that I start thinking maybe I am experiencing these side effects. But I'm not. I'm doing okay. I AM tired, more tired than before all this stuff began, but I read somewhere that it can take a month to get back to "normal" from every chemo treatment and every week of radiation therapy, so that would be a LONG time. But I'm doing okay. Dr. VR pointed out that at the end of this week, I will be half done with the radiation. Whoopee! My reward for finishing radiation? I get to go back to chemo! (Actually so far the radiation isn't that bad; I'm not suffering side effects yet - except continuing fatigue - and I am able to work and live life. I'm not complaining.)
Thanks to everyone for the continuing calls, kind email messages, particularly those who have had and taken the time to stay in touch - even if briefly - regularly. I know I don't always have a chance to reply directly to you, but it means a lot to me to get your messages or comments on this blog or phone calls/messages. Word seems to be leaking out more broadly at my office, and I have had emails, phone calls and cards from people who are just hearing the news. It's all so astounding to me, the breadth and depth of the support of my family and friends. Indeed I feel very lucky.
Kim is following up at work with the HR department about the disability insurance company fiasco. I'm not taking any bets on the outcome but it will work out, one way or another.
I hear cold weather is coming, but I'm in a spring-is-going-to-come kind of mood.
Peace.
I saw Nurse S yesterday; she still leaves me cold. She's not horrible or anything, I just don't "connect" with her. I guess she makes me appreciate all the other nurses, doctors, nurses aides, technicians with whom I have connected. Saw Dr. VR today. Both ask me the same questions over and over: How am I feeling? Any change in my bowel movements? Diarrhea? Any change in bladder (frequent urination is a potential side effect)? Any increase in fatigue? Over and over, to the point that I start thinking maybe I am experiencing these side effects. But I'm not. I'm doing okay. I AM tired, more tired than before all this stuff began, but I read somewhere that it can take a month to get back to "normal" from every chemo treatment and every week of radiation therapy, so that would be a LONG time. But I'm doing okay. Dr. VR pointed out that at the end of this week, I will be half done with the radiation. Whoopee! My reward for finishing radiation? I get to go back to chemo! (Actually so far the radiation isn't that bad; I'm not suffering side effects yet - except continuing fatigue - and I am able to work and live life. I'm not complaining.)
Thanks to everyone for the continuing calls, kind email messages, particularly those who have had and taken the time to stay in touch - even if briefly - regularly. I know I don't always have a chance to reply directly to you, but it means a lot to me to get your messages or comments on this blog or phone calls/messages. Word seems to be leaking out more broadly at my office, and I have had emails, phone calls and cards from people who are just hearing the news. It's all so astounding to me, the breadth and depth of the support of my family and friends. Indeed I feel very lucky.
Kim is following up at work with the HR department about the disability insurance company fiasco. I'm not taking any bets on the outcome but it will work out, one way or another.
I hear cold weather is coming, but I'm in a spring-is-going-to-come kind of mood.
Peace.
Sunday, January 24, 2010
Sunday morning
Jessie and I had a good walk in the park this morning. But that's not why I am making this post. As someone going through radiation treatment, this NYTimes article scared the bejeezes out of me:
http://www.nytimes.com/2010/01/24/health/24radiation.html?hp
I guess I need to ask my radiation techs every day, "Please confirm that you are using the correct dosage". Seems kind of inadequate to the consequences should they fail to do so.
Oh well.
Peace.
http://www.nytimes.com/2010/01/24/health/24radiation.html?hp
I guess I need to ask my radiation techs every day, "Please confirm that you are using the correct dosage". Seems kind of inadequate to the consequences should they fail to do so.
Oh well.
Peace.
Saturday, January 23, 2010
Saturday morning
Better day beginning. Jessie and I went to the park and walked both loops. A quiet morning, with a pale eggshell yellow sunrise. We sat on a bench by the pond a few minutes. The pond ice is still thick, white, with rough and jagged ridges. I want to see it begin to break up, show patches of water, to know my heron and duck friends will be back ... but those days are still off in the future. And in a post-cancer world, I am trying to learn not to waste time in wanting to skip any parts of life since I am reminded that I don't know how many parts I have left. (I did see a flock of Canadian geese this week, but not at the park. They were grazing on the lawn of the local college campus.)
Anyway, the sun is out.
Peace.
Anyway, the sun is out.
Peace.
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