So. Here are the details. written by rebecca
There was a little bit of cancer spread or growth from each place, lung, lymph & liver. It is the first time I did not insist on seeing the CT scan for myself. I did not really need to. It seemed obvious. I was a little surprised that the liver had grown, the rest was not so surprising. So. I had thought through the option of changing chemo’s a bunch before the appointment so I arrived ready. More on that below.
The day of the appointment was week 2 in my 3 week round that included a week off. I had plans to not have chemo next week and I did not want to change. I was supposed to go from the onco doc to chemo. The doc was not overly concerned, which is good, and said that if I wanted to miss this week as well as next week, then start fresh I could. I felt that would be too long without support for my body. I guess the way I view chemo has shifted. I see it as something that is good for me, which I think is good. We all agreed that I could change chemos mid-round and do Navelbine this week, take next week off and start a regular round after that.
The new chemo, navelbine, went amazingly well. I mean REALLY well. go figure. I guess I did them out of order (in terms of side effects) and this one has possibly less harsh side effects. The neuropathy part is something that will grow over time, so we will see how that goes. The nausea was severe, but only lasted a few hours. Knowing that it is not going on for days, makes it easier. There was no fever.
Last night (the day after) I even went out with a friend. Ze'ev had a thing in SF. He did a focus group on video games for ....$75! A friend and I took him in, had dinner, and brought him back. It was really fun. I moved slowly and did not drive, so I am pretty sure I did not over do it.
Because of my bounciness I asked my doc if there were steroids in this round of chemo, but he said no! So this is my energy. Very very exciting, but I am playing it supersafe. I am laying low (except for last night).
I have been going to two acupuncturists that work together. Bob, my main guy, cannot fit in two apts with me a week. I have to share him with the general population. The good news is that he has lots of amazing people in his clinic and one of them, Ann sees me too. It is nice to have a back up person that I am as confident in as my main one.
I am also seeing Bobbie the energy worker up in Napa . No longer every week, but hopefully every two weeks. Dawn is new on my team. She does acupressure and energy work and seems to be psychic. That word bugs me, but she really knows her stuff and is helping a lot. Because of Bobbie & Dawn’s help, this whole shift to a new chemo has not been traumatic, but empowering. I feel like I managed to prevent trauma which is a lot cleaner than having trauma and then recovering from it.
love love you all sooooo much
Rebecca
Friday, May 28, 2010
Wednesday, May 26, 2010
As Expected
As predicted the latest scan results were not great. They indicate that the current chemo is no longer effective, so, time to move on to the next one. Rebecca had her oncology appointment at 10:15 and chemo scheduled for 11:00. It was decided to change chemo so instead of getting Gemzar today Rebecca got Navelbine. She will maintain her 2 weeks on and one week off schedule on the new drug.
We'll let you know how she tolerates the new drug.
Andy
We'll let you know how she tolerates the new drug.
Andy
Tuesday, April 20, 2010
lfe, this week.
Hi everybody.
I want to let you know that this week when I went to my acupuncturist, he said that it is the first time he has seen me since the Bat Mitzva that I am doing better. I guess I bottomed out almost 2 weeks ago when my chemo fever lasted for 4 days. The good news is that one can consider that a 'healthy immune response.' That means that I had an infection and my body finally burned it out. I am still coughing, but to keep it clean, the stuff that comes up is no longer colorful. I feel the difference in my lungs, it is lighter. I can now feel the cancer in there, which is a bit weird, but also comforting that I can feel the difference. Now as the cancer lightens up again, I will be able to feel the difference. When there is alot going on, it is hard to differentiate.
With doing better, my energy is coming back a bit. I have to be really careful to not over do it and to not underdo it too. I need to use my energy to get stronger, but pace myself so that I do not go into overdrive. I think my practice in knowing the difference between adrenaline energy and regular energy will help with this. There is still a learning curve there.
The meals and the other help has been great. I have some more errandy things that I will ask for help with soon. I am still up for juicers to visit and make me juice. I do not have chemo this week. yippie!
love love
rebecca
I want to let you know that this week when I went to my acupuncturist, he said that it is the first time he has seen me since the Bat Mitzva that I am doing better. I guess I bottomed out almost 2 weeks ago when my chemo fever lasted for 4 days. The good news is that one can consider that a 'healthy immune response.' That means that I had an infection and my body finally burned it out. I am still coughing, but to keep it clean, the stuff that comes up is no longer colorful. I feel the difference in my lungs, it is lighter. I can now feel the cancer in there, which is a bit weird, but also comforting that I can feel the difference. Now as the cancer lightens up again, I will be able to feel the difference. When there is alot going on, it is hard to differentiate.
With doing better, my energy is coming back a bit. I have to be really careful to not over do it and to not underdo it too. I need to use my energy to get stronger, but pace myself so that I do not go into overdrive. I think my practice in knowing the difference between adrenaline energy and regular energy will help with this. There is still a learning curve there.
The meals and the other help has been great. I have some more errandy things that I will ask for help with soon. I am still up for juicers to visit and make me juice. I do not have chemo this week. yippie!
love love
rebecca
Saturday, April 10, 2010
Tumor marker story
So. My tumor marker was not as bad as I thought it could be. For the Bat Mitzva, I took off a week of chemo and wiped my self out as well. That took my marker up to 100 (from the 62-72 that it was hanging out at). Normal is 36 and below. It has not been there for a very long time. It got back down to 62-72 since I had pneumonia. During pneumonia I think it was up near 156 or something. This week it was down to 98. So I am slowly stabilizing and maybe even going back down again.
This is taking a lot of work on the part of our whole family. I am not moving very much these days. Today is a dear friend's Bat Mitzva and I am missing it right now. This Wed was my first week of a new round of chemo. Two weeks on, one week off = one round. It is Sat now and I still have not shaken the fever. That tells me that my body is still pretty weak. The good news is that I tolerated the chemo better this time than the round that started right after Merav's Bat Mitzva. So... despite feeling yucky, I am doing better than I was.
I just put out a request for some help on the lotsahelpinghands.com website. If you want to be on it and are not, let us know.
love love
rebecca
This is taking a lot of work on the part of our whole family. I am not moving very much these days. Today is a dear friend's Bat Mitzva and I am missing it right now. This Wed was my first week of a new round of chemo. Two weeks on, one week off = one round. It is Sat now and I still have not shaken the fever. That tells me that my body is still pretty weak. The good news is that I tolerated the chemo better this time than the round that started right after Merav's Bat Mitzva. So... despite feeling yucky, I am doing better than I was.
I just put out a request for some help on the lotsahelpinghands.com website. If you want to be on it and are not, let us know.
love love
rebecca
Tuesday, April 06, 2010
life, post Bat Mitzva
Hi folks. So, the Bat Mitzva is over, we are settling back to normal. I danced and danced and danced. I waaaay over did it and had lots of fun doing that. The whole event was amazing and everyone was amazing.
I have been totally wiped out since everyone left. I spent 4 days horizontal after chemo on Wed. Being wiped out at the beginning of the chemo round meant that my body was more sensitive to the side effects and it was not pretty. The whole nausea thing for me is worse than the fever thing, but I got both.
About a week later, I started moving about and I am still recovering. It is going to be a long slow rebuilding of energy and strength as it goes when you use up all of your energy resources. I am glad I did it, even still.
In some ways, I feel like I am recovering faster than expected, because I am really really taking care of myself and starting to feel better. In other ways, I feel like it is going to take a long time to get back up to where I was. Part of the issue is that the energy I expelled over the Bat Mitzva week was above what I usually have and getting back to that level of energy on a daily basis will probably not happen.
I have had a bit of a pity party about it all. I want to go on the family bike rides. I want to grocery shop, and even bike there with the trailer. I want to pull weeds and get the garden going again. I want to have energy to get another dog because I miss being a dog owner and it has not even been a whole month since Joe died. I want to plan a summer in which I have energy to do fun activities with my kids. I want to have energy to go to the snow even if it is just to inner tube down a hill once. I want to get involved with the food movement and make a difference making local organic food happen.
Things that I thought I said goodbye to already, I have to do it again and again. It gets me feeling jealous and angry.
I suppose all of this is a natural anti-climax from the work that it took to pull off the Bat Mitzva. But that does not make it any less real.
I am feeling like I need so much help, but find it hard to ask for it, even when people are offering. At this point we do need help. I am tired and Andy is spent. We cant seem to take care of enough. I am working on summer plans for the kids. If anyone reading this wants help with their little one over the summer, Merav wants to do Ravi camp again and has a more flexible schedule. She is really interested in cooking at this point and wants to do baking too. Both kids are going to kayak, that will be fun. It will be a quieter summer than what they had back when they were camped up all summer long. I think that is a good thing.
If you can help with shopping or cooking or stupid errand running, let me know. I need to figure out how to organize it because so much is not able to plan ahead of time. I will try to use the www.lotsahelpinghands.com or .org again. If you are not on it and want to be on it, let us know.
I will know more about my health statistics in a couple of days. I am starting another round of chemo tomorrow and will have my numbers soon. I do not know what to expect.
Love to you all.
I have been totally wiped out since everyone left. I spent 4 days horizontal after chemo on Wed. Being wiped out at the beginning of the chemo round meant that my body was more sensitive to the side effects and it was not pretty. The whole nausea thing for me is worse than the fever thing, but I got both.
About a week later, I started moving about and I am still recovering. It is going to be a long slow rebuilding of energy and strength as it goes when you use up all of your energy resources. I am glad I did it, even still.
In some ways, I feel like I am recovering faster than expected, because I am really really taking care of myself and starting to feel better. In other ways, I feel like it is going to take a long time to get back up to where I was. Part of the issue is that the energy I expelled over the Bat Mitzva week was above what I usually have and getting back to that level of energy on a daily basis will probably not happen.
I have had a bit of a pity party about it all. I want to go on the family bike rides. I want to grocery shop, and even bike there with the trailer. I want to pull weeds and get the garden going again. I want to have energy to get another dog because I miss being a dog owner and it has not even been a whole month since Joe died. I want to plan a summer in which I have energy to do fun activities with my kids. I want to have energy to go to the snow even if it is just to inner tube down a hill once. I want to get involved with the food movement and make a difference making local organic food happen.
Things that I thought I said goodbye to already, I have to do it again and again. It gets me feeling jealous and angry.
I suppose all of this is a natural anti-climax from the work that it took to pull off the Bat Mitzva. But that does not make it any less real.
I am feeling like I need so much help, but find it hard to ask for it, even when people are offering. At this point we do need help. I am tired and Andy is spent. We cant seem to take care of enough. I am working on summer plans for the kids. If anyone reading this wants help with their little one over the summer, Merav wants to do Ravi camp again and has a more flexible schedule. She is really interested in cooking at this point and wants to do baking too. Both kids are going to kayak, that will be fun. It will be a quieter summer than what they had back when they were camped up all summer long. I think that is a good thing.
If you can help with shopping or cooking or stupid errand running, let me know. I need to figure out how to organize it because so much is not able to plan ahead of time. I will try to use the www.lotsahelpinghands.com or .org again. If you are not on it and want to be on it, let us know.
I will know more about my health statistics in a couple of days. I am starting another round of chemo tomorrow and will have my numbers soon. I do not know what to expect.
Love to you all.
Wednesday, December 23, 2009
good news!
Hi folks. So I will start with the big news. I got a good result on my CT scan. It showed the liver metastases significantly reduced. Some of them were gone. The lung mets shrunk and changed shapes. The doc thinks that the shape change is due to me getting some scar tissue in my lungs, not cancer. I can live with that, for a while.
So the last few posts I did were very vague about how I am doing. I now understand why that is. I had kinda checked out of my body. Not really focused on myself, but on the world instead. That is the kind of behavior that gets me sick. So I had a period of time that I felt ok, because I was not paying attention. I over did it and did not notice. Andy was slowly taking on more and more responsibility for household stuff and I did not even notice. A couple of weeks ago, I started to pay attention and took a nose dive in how I felt. Not surprisingly, it happened while Andy was away and I had so much more on my plate. By the time he got back, I was in bed and stayed there for the next week and a half.
I have been slowly recovering and noticing the depth of my sick pattern. I start feeling better and the list of things I need to do comes back into my head. I do one, then another day I notice that I can do more that one and still feel good. I continue to increase what I do till I am going again. These are not big project things. They consist of regular mom and house stuff. Drop kids off, go to doc apts, cook dinner, do dishes, do a load or two of laundry… I really want to break this cycle and think that it will be the best thing to do to keep me around for a while. The challenge is that I want to do all of these things, yes, even the laundry is satisfying. It makes me feel valuable to the people around me and I enjoy that aspect of life. And, there is just so much to get done. I also think I am shifting from being an extrovert to an introvert. I love having people around still, but it makes me tired afterwards. The hardest part is that it is not consistent. Sometimes it does and sometimes it doesn’t. I feel like I do not post often, but that I am starting to sound like a broken record. But hey, aren’t we all?
It is hard to know what help I need but here are a couple of things
• I need help finding a good reliable housecleaner who is willing to clean a house that is not tidy before they get here. I have systems for where they need to put the stuff, but I might not get everything put away before they come. Other than that, we are asking for a couple meals a week again, on the days that Andy works in San Mateo. I can cook sometimes. If you want to be on our support people’s list and you are not on it already, and then let us know and we will get you on it.
• Another thing I have asked for is respite for dog care. The dog is not well and wakes me up every night at some point. I am doing as my spiritual guide has instructed and not putting him down. He has a life cycle to go through and I am learning about the death process from him. It is not pretty or easy, but I feel it is important to watch. This does not mean that I do not need breaks. The dog could use walks around the block, very slowly… and I could use a night or two of sleeping through the night. If you are able to help, it would be lovely.
If you can think of a way to help me that I have not thought of, even if you do not want to do it yourself, I would like ideas. It is hard to see it from the inside.
So this holiday, we are laying low. No vacation or big trip. We are going to visit a friend who is just a couple hours away for 2 nights and then we are going to take the kids to fun stuff around the bay area. For Ze’ev’s b’day, we are going ice skating and maybe for dim sum. The big treats are that Merav and Rebecca are going to see Wicked and Ze’ev and Andy are going to swim with dolphins at Marine World. Very exciting.
Because I am doing well even though I had inconsistent chemo during Thanksgiving, We have changed my chemo regime. I am getting a week off, the one between Christmas and New Years. Then I am having 2 weeks on and one week off, instead of 3 weeks on one week off. That is 66% instead of 75% chemo. We will see if that combined with a (hopefully) slower lifestyle can keep the cancer at bay.
Sending all of my love.
rebecca
So the last few posts I did were very vague about how I am doing. I now understand why that is. I had kinda checked out of my body. Not really focused on myself, but on the world instead. That is the kind of behavior that gets me sick. So I had a period of time that I felt ok, because I was not paying attention. I over did it and did not notice. Andy was slowly taking on more and more responsibility for household stuff and I did not even notice. A couple of weeks ago, I started to pay attention and took a nose dive in how I felt. Not surprisingly, it happened while Andy was away and I had so much more on my plate. By the time he got back, I was in bed and stayed there for the next week and a half.
I have been slowly recovering and noticing the depth of my sick pattern. I start feeling better and the list of things I need to do comes back into my head. I do one, then another day I notice that I can do more that one and still feel good. I continue to increase what I do till I am going again. These are not big project things. They consist of regular mom and house stuff. Drop kids off, go to doc apts, cook dinner, do dishes, do a load or two of laundry… I really want to break this cycle and think that it will be the best thing to do to keep me around for a while. The challenge is that I want to do all of these things, yes, even the laundry is satisfying. It makes me feel valuable to the people around me and I enjoy that aspect of life. And, there is just so much to get done. I also think I am shifting from being an extrovert to an introvert. I love having people around still, but it makes me tired afterwards. The hardest part is that it is not consistent. Sometimes it does and sometimes it doesn’t. I feel like I do not post often, but that I am starting to sound like a broken record. But hey, aren’t we all?
It is hard to know what help I need but here are a couple of things
• I need help finding a good reliable housecleaner who is willing to clean a house that is not tidy before they get here. I have systems for where they need to put the stuff, but I might not get everything put away before they come. Other than that, we are asking for a couple meals a week again, on the days that Andy works in San Mateo. I can cook sometimes. If you want to be on our support people’s list and you are not on it already, and then let us know and we will get you on it.
• Another thing I have asked for is respite for dog care. The dog is not well and wakes me up every night at some point. I am doing as my spiritual guide has instructed and not putting him down. He has a life cycle to go through and I am learning about the death process from him. It is not pretty or easy, but I feel it is important to watch. This does not mean that I do not need breaks. The dog could use walks around the block, very slowly… and I could use a night or two of sleeping through the night. If you are able to help, it would be lovely.
If you can think of a way to help me that I have not thought of, even if you do not want to do it yourself, I would like ideas. It is hard to see it from the inside.
So this holiday, we are laying low. No vacation or big trip. We are going to visit a friend who is just a couple hours away for 2 nights and then we are going to take the kids to fun stuff around the bay area. For Ze’ev’s b’day, we are going ice skating and maybe for dim sum. The big treats are that Merav and Rebecca are going to see Wicked and Ze’ev and Andy are going to swim with dolphins at Marine World. Very exciting.
Because I am doing well even though I had inconsistent chemo during Thanksgiving, We have changed my chemo regime. I am getting a week off, the one between Christmas and New Years. Then I am having 2 weeks on and one week off, instead of 3 weeks on one week off. That is 66% instead of 75% chemo. We will see if that combined with a (hopefully) slower lifestyle can keep the cancer at bay.
Sending all of my love.
rebecca
Thursday, December 03, 2009
Steady As She Goes
Hi Y’all,
I guess because there is a rhythm to my life, it seems somewhat normal. I do chemo most Wednesdays. I often get a fever from it, sometimes for just a couple hours, sometimes for a whole day. The next day I recover and I move on. I have discovered that a big part of feeling good is getting a good night’s sleep. So now I take drugs for that. It had been so long since I was sleeping through the night that I did not recognize what a difference it makes.
I go to doctors. Sometimes I feel social, sometimes not. I do not blog as much because of the predictability of life. I guess I do not feel the need to have you ride every up and down in my life. I think I have also gotten less social. I am not able to talk to and see everyone that I want to. I spend a lot more time alone, and do not mind. For those of you who have known me forever, it is good that I am learning to enjoy my own company. I also find that when I have energy, which is often, there is a lot to get done in life.
Right now I am working on balancing our books and doing the financial aide forms that are due Dec 11th. We are throwing a fundraising candlemaking party for Ze’ev’s school on Dec 12th. We have Andy’s brother visiting on the 5th and a bunch of other stuff going on. I have to get a metal rack under my bees before it is too cold (if it is not already) to keep the ants out. The dog is getting worse, but I am following my spiritual path and not putting him to sleep. He is here on this earth for a reason and I want to support him to get through at his own pace. I know most of my people disagree with that, but I feel I am doing the right thing. He is not in too much pain, and he knows he is loved. It is extra work, but I can use it to remember love and slowing down in my own life. So life does seem to be incredibly busy. I am trying to make it less busy.
I want to find a way to create a calmer life so that I am not running from activity to activity when I have energy, but slowing down. I do not know how to do that and get wound back up to a frantic speed before ending up on my back, feeling yucky. It is a cycle that is very old for me and is hard to break, hence I get sick.
We have not been having people helping us with food because I have been so active. I am beginning to feel like life is being overwhelming and I might need to get help from everyone to slow down. I do not know if food is the answer, but I will keep you posted. I feel like if I have energy to do my projects, I should feed my family first. It is part of the prioritizing and slowing down thing. Honoring my body and eating well. Honoring life and taking care of it….all challenges…
So much love to you all.
rebecca
I guess because there is a rhythm to my life, it seems somewhat normal. I do chemo most Wednesdays. I often get a fever from it, sometimes for just a couple hours, sometimes for a whole day. The next day I recover and I move on. I have discovered that a big part of feeling good is getting a good night’s sleep. So now I take drugs for that. It had been so long since I was sleeping through the night that I did not recognize what a difference it makes.
I go to doctors. Sometimes I feel social, sometimes not. I do not blog as much because of the predictability of life. I guess I do not feel the need to have you ride every up and down in my life. I think I have also gotten less social. I am not able to talk to and see everyone that I want to. I spend a lot more time alone, and do not mind. For those of you who have known me forever, it is good that I am learning to enjoy my own company. I also find that when I have energy, which is often, there is a lot to get done in life.
Right now I am working on balancing our books and doing the financial aide forms that are due Dec 11th. We are throwing a fundraising candlemaking party for Ze’ev’s school on Dec 12th. We have Andy’s brother visiting on the 5th and a bunch of other stuff going on. I have to get a metal rack under my bees before it is too cold (if it is not already) to keep the ants out. The dog is getting worse, but I am following my spiritual path and not putting him to sleep. He is here on this earth for a reason and I want to support him to get through at his own pace. I know most of my people disagree with that, but I feel I am doing the right thing. He is not in too much pain, and he knows he is loved. It is extra work, but I can use it to remember love and slowing down in my own life. So life does seem to be incredibly busy. I am trying to make it less busy.
I want to find a way to create a calmer life so that I am not running from activity to activity when I have energy, but slowing down. I do not know how to do that and get wound back up to a frantic speed before ending up on my back, feeling yucky. It is a cycle that is very old for me and is hard to break, hence I get sick.
We have not been having people helping us with food because I have been so active. I am beginning to feel like life is being overwhelming and I might need to get help from everyone to slow down. I do not know if food is the answer, but I will keep you posted. I feel like if I have energy to do my projects, I should feed my family first. It is part of the prioritizing and slowing down thing. Honoring my body and eating well. Honoring life and taking care of it….all challenges…
So much love to you all.
rebecca
Thursday, November 12, 2009
long over due
So I feel very behind on updates, but that is because it has been hard to pin down how I am feeling. It can fluctuate from day to day or hour to hour. I have not wanted to send all of you on the roller coaster with me. I am generally doing much much better than I was last year at this time. I am on Gemzar. The chemo is quick (1 hour in and out), and gives me a fever the day of. The next day I can be wiped, or fine. My energy can be good on chemo days/weeks or bad on non chemo days/weeks. Go figure. I am getting a weird neuropathy, that also comes and goes, that is like an ache on my skin.
This week I got the doctor’s permission to skip chemo and go on Ze’ev’s overnight field trip to Monterey! Then I come back Friday and go with some friends to Tahoe to celebrate one if their b’days!
I am generally more functional on the home front, being in charge of dinner many nights, do laundry, grocery shop ( I love grocery shopping)… more normal stuff.
We have not been getting people to feed us, but we might start again on chemo days, keep you posted on that.
I got some great work on my neck and head lately that has really increased the old blood flow. Literally and figuratively. I have been thinking more clearly and remembering more. I managed to coordinate my travel this week in a low stress organized fashion. That has felt really good and empowering for me.
We are having fun on the dale family farm, which is shown on our blog. I had no idea that kale just keeps growing and growing, wondering if it will die when it grows taller than me and then falls over. Its at about 3 feet now… The chickens love it.
I love you and if you have specific questions I can answer, please ask.Otherwise, it is just how my life is. It may seem especially hard to you, but at this point for me, it is just life. Sometimes hard, sometimes not.
Thank you and love to you all!!!
love love
rebecca
This week I got the doctor’s permission to skip chemo and go on Ze’ev’s overnight field trip to Monterey! Then I come back Friday and go with some friends to Tahoe to celebrate one if their b’days!
I am generally more functional on the home front, being in charge of dinner many nights, do laundry, grocery shop ( I love grocery shopping)… more normal stuff.
We have not been getting people to feed us, but we might start again on chemo days, keep you posted on that.
I got some great work on my neck and head lately that has really increased the old blood flow. Literally and figuratively. I have been thinking more clearly and remembering more. I managed to coordinate my travel this week in a low stress organized fashion. That has felt really good and empowering for me.
We are having fun on the dale family farm, which is shown on our blog. I had no idea that kale just keeps growing and growing, wondering if it will die when it grows taller than me and then falls over. Its at about 3 feet now… The chickens love it.
I love you and if you have specific questions I can answer, please ask.Otherwise, it is just how my life is. It may seem especially hard to you, but at this point for me, it is just life. Sometimes hard, sometimes not.
Thank you and love to you all!!!
love love
rebecca
Tuesday, October 13, 2009
The Grapes of... Jelly
(there's a Rebecca update hidden in the penultimate paragraph).
We decided to 'do our bit' and use as many grapes as we could. We went up to Peters and picked about a 1/4 ton of grapes (took Rebecca and I 3 hours). We put the grapes through the 'de-stemmer' and brought them home in large flat containers called 'lugs'. 2/3 of the grapes have been 'put-up' for wine (fermenting in the laundry room). The other 1/3 (about 130 pounds) we made into Jelly... it took 2 FULL 12 hour days... but it was fun!... LOOK:-
The wine will be another... long... process... and post.
Meanwhile - Rebecca has started her new chemo. Predictably, it is making her feel somewhere between 'a little crappy' and 'like sh#t'. As well as the physical effects our ability to ride the emotional roller-coaster varies day-by-day... We seem to be at our best when we are engaged in these big projects... when we slow down and think, it's harder. With Rebecca's reaction to the chemo it's hard for her to work on the projects.
Next weekend we are 'going to market' we'll be selling Jelly, Honey and Oil from Dale Family Farm from a booth at a friends school fair/area festival. This week we have to build our booth.
Friday, October 02, 2009
So far so good
It is Friday morning. Rebecca started on her new chemo, gemzar, on Tuesday. She had a slight fever and headache that same day but subsequently has been doing pretty well. She has experienced a little, but not much, nausea. She has been tired, that could be from the chemo or it could be from the poor sleep she's been having.
Meanwhile... Sylvia from work provides us with a visualization aid to work with. I want to see this page go viral! I find it strangely compelling and could spend hours cycling through. THANKS Sylvia!! - http://andytrackable.s3.amazonaws.com/zapit.html
Meanwhile... Sylvia from work provides us with a visualization aid to work with. I want to see this page go viral! I find it strangely compelling and could spend hours cycling through. THANKS Sylvia!! - http://andytrackable.s3.amazonaws.com/zapit.html
Thursday, September 17, 2009
Wednesday, September 16, 2009
Saturday, September 12, 2009
oncological whack-a-mole
As you all know Rebecca's has been feeling pretty good for the last few months. She had a bad 6 months at the end of last year and the beginning of this but after she started on chemo she got massive relief from her symptoms and got a lot of her energy back. She went in for a CT scan this week. As we expected the tumor in the lungs has significantly receded, hence the relief in symptoms. What comes as a complete surprise is that meanwhile the cancer in her liver has progressed significantly. Apparently one only needs about 20% of one’s liver to function and Rebecca’s is only compromised by 10%-15% so she’s in no immediate danger from liver related side-effects. The progression is considerable though; going from one visible lesion to (we counted) 20. When the liver is effected with one large mass it is possible to apply a local treatment directly on the tumor. With the tumor spread out as it is the only treatment option is systemic. (Even the doc made a fried liver joke at this point).
The doc has made it very clear that we should stop the current treatment and go on to another that will address the progression in the liver. He has given us a choice of 3 different chemo options to chose from; strawberry, vanilla or chocolate… oh no that was at the store after. I can’t remember right now what the choices are but as I research them and commit all the pros and cons to memory I will share them with you here. Doctor made it very clear that even if there is no net increase in tumor mass this is a concerning result. The cancer in the liver is now the ‘primary concern’ so all those good healing thoughts that we have all been beaming at Rebecca’s lungs so effectively; now need to be directed at her Liver.
We are both a little freaked out but are trying to remember to just stay on the moment and enjoy the time we have right now.
We will keep you posted.
LOTS OF LOVE
Tuesday, August 18, 2009
chemo vacations
I have been remiss about writing. Not much to say…
I am starting another chemo vacation tomorrow (my birthday. 41!) that is going on for 3 weeks. J During the time that I was on the last one, my tumor marker went from 55 to 63. The doctor was not concerned about it. He wants me to take this next vacation and enjoy the summer with the family. I have had 2 weeks of chemo between vacations. I am going to get my markers checked before the vacation, so I know what happens during it compared to during chemo.
I have up days and down days. I am always surprised that I get wiped out. Maybe it is my spaciness that makes me forget, maybe I am optimistic. I wish I could control them so I could chose which days to lay around and which I can do my projects, but I cant. The up days come at unknown times. The doc has changed my benedryl to something that does not have as many side effects, so after chemo last week I was full of vim and vigor. Now I am wiped even though it has been almost a week since the last chemo. Maybe coming off of the steroids. Maybe the chemo stays in my body longer than one would think. I don’t know.
There is a bunny in the neighborhood. We caught it once and gave it back to the little girl who got it from an aunt, but she did not keep it for more than a week. We are trying to catch it again so we can give it/find it a home. We don’t know if we will keep it, but who knows…. It is a baby, white and black. Very very cute.
The kids just went on their last week away for the summer. Camp Kesem is for kids who have a cancerous parent. That’s me. I hope they are having fun. I thought I would be glad to have more down time, but it is the first morning and I miss them terribly. Ya never know how something is going to make you feel till it gets here.
The chickens are all laying. The one that we were told was a boy, isn’t. So we have 9 laying hens and about 7-8 eggs a day. They are little, but very yummy. Some of the hens lay in the boxes they are supposed to, but most lay in one spot under the blackberries. Oy! They are very friendly. We have started watering the lawn so the chickens have greens to eat. The garden is good. We are trying to get the next round of patches planted with winter squash, spinach and turnips. Maybe we will plant favas again somewhere. That went well. The tomatoes are just coming in. The cukes are just finishing. Beans are slow producers…etc…
We seem to be all about the food and the yard and the projects in the yard these days. It is fun.
Wednesday, August 05, 2009
Update
It has been a while again. It is early Wednesday morning. I am about to go back to chemo today. I had a chemo vacation of two weeks. That is I did a round of 3 weeks, had my usual week off, and then had another 2 weeks off. It has been a good learning experience. There is subtlety to what the chemo does to me. I have clearly had more energy, which is really nice, but also a general feeling human, sleeping better and better gut mean that life has just been easier. I am ok going back to chemo today because I know that it is part of the medicine that makes me feel better. I remember back to before I started it and I was in pretty bad shape. I am not in bad shape anymore, relatively speaking.
This all leads to people saying, ‘so are you getting better?’ That is a complicated question. I am not getting worse, but I am not ‘all better.’ Connee described it for me well. I am in a no mans land. The whole family is. Life is kinda normal, but not really the way we would have it if we could. The proverbial shoe could drop any time from now for a couple of years, according to the medical establishment. That would mean that I would have to change chemos to one that makes me feel worse. But I am doing a lot of other stuff and last time I had 5 years between flare-ups, so… I am holding out for longer. It is still strange though because we are really living with the cancer again with it affecting us more than it used to. So there is an underlying tension, but on top of that we are living our lives, talking about it and having fun where it is available (which is more than one would think!) so that life is not about cancer (‘cause that is a drag).
I am very grateful for people who are helping us. I do not know if that is clear to you all or not, but I am. I also feel like some people may start to think that we are getting back to ‘normal’. Well normal has just changed so there is no returning to what was normal for us when I was not sick. That is the confusing part. We may look more normal, but the help is still appreciated. Being the good Jew that I am, there is guilt associated with receiving help when I do not look like I need it. So I keep looking to the practice that tells me that I can give others opportunities to do good deeds by letting them help me. So by you helping me, I am helping you to do good (which is good for everyone).. We currently get 2 meals a week and the usual last minute calls from me to people to pick kids up or drop them off somewhere. This summer has been nuts with logistics. That is another way that the chemo is affecting me. I am just not able to think as clearly and hold any balls in the air when it comes to family scheduling. It is frustrating to make so many mistakes that affect so many people. That is the next step for me. To figure out how to be more coordinated. At this point I do not make any plans without my ‘book’ in front of me, so thank you for all of your patience.
We took a real vacation too: I have to run but to keep it short, we went to Santa Barbara with Andy’s siblings that live in the states and their families. It was mellow, beautiful and relaxing. I did not realize what a break it was until I came back and tried to start thinking about everything that needs to be done around here. It was a real break. Andy and I had a date too to celebrate our 15th wedding anniversary J. We took a recumbent bicycle for two and went on a 4 mile round trip. He did a bunch of the hard work, but I was able to keep up pretty well. That is an example of what I can do these days. Lets see how the chemo vacation affected my tumor marker. We should know in a couple of days. We are planning for me to have one round of chemo, then another two-week vacation for the end of the summer. We might not go away, but it would be nice to be around the house and not feeling ucky…
Monday, July 20, 2009
Been a long time
I don't know why I stopped blogging here. I think it has something to do with the fact that Rebecca tends to be much more 'glass-half-full' and I tend to be 'glass-half-empty'. With her telling you all how great things are going I don't want to be the Eeyore or Marvin (pick your literary reference) bringing everyone down. Over the last couple of months things have been going well; as the test results show, the chemo seems to be working really well. If it wasn't for the fact that she's on chemo and has cancer... everything would be great :-)
Meanwhile, we have been having lots of fun!
With the help of Rebecca's aunt Jan we have created a beautiful front garden where there was a scrub patch for the last 15 years. Our veggie garden is putting out huge quantities of awesome tasting food. The chickens are just fun to have around and now we got our first egg. Yesterday Rebecca extracted enough honey from our bee hive to last us a year and I spent the day building a bicycle driven spit that will be used next weekend to cook a whole pig at a friend’s party (pictures to follow). (The theme of the party is “Ride the 21 speed pig”). Rebecca and I are having lots of fun doing this stuff together!
If only I could let go of the nagging worry in the back of my mind; life would be pretty much perfect.
Meanwhile, we have been having lots of fun!
With the help of Rebecca's aunt Jan we have created a beautiful front garden where there was a scrub patch for the last 15 years. Our veggie garden is putting out huge quantities of awesome tasting food. The chickens are just fun to have around and now we got our first egg. Yesterday Rebecca extracted enough honey from our bee hive to last us a year and I spent the day building a bicycle driven spit that will be used next weekend to cook a whole pig at a friend’s party (pictures to follow). (The theme of the party is “Ride the 21 speed pig”). Rebecca and I are having lots of fun doing this stuff together!
If only I could let go of the nagging worry in the back of my mind; life would be pretty much perfect.
Wednesday, July 01, 2009
gooder news
Hey everybody. My tumor marker is down to 55! You can check previous posts to compare notes. 39 is normal and means that my cancer is not growing any more. It does not reflect how much I have in me, though I think it is definitely weaker. I am also suddenly putting on the poundage. That is, I gained 5lbs in two weeks eating the same way I was when I was not gaining weight. So… I am now needing to get pants AGAIN, but for a different reason. All the skinny pants I got, don’t fit. I will put them away for a rainy day, but meanwhile, I am feeling good, eating good, gardening, biking a very little bit and generally doing the ‘life’ thing. The weight gain and the tumor marker drop are all good news. I am also going to get fewer steroids with my chemo starting next week. Yippie. I am however getting more sensitive to the Benadryl and it is knocking me out for 6 hours at this point. I do like sleeping, so it is not the end of the world, it just throws my sleep schedule off a bit mid week.
Love love and talk to you soon….
Rebecca
Love love and talk to you soon….
Rebecca
Sunday, June 21, 2009
long time no update.
Long time no update. I have not had a lot of news, so I have not written much. Now I have some good news which is that the thing on the side of my neck is no longer palpable!
Doctor news: I went to the ENT today to get an understanding of my voice. He explained that my polyp healed fine, that was on the left side. On the right side, my vocal cord is weak. This is not the side that the nerve goes down into the chest and is parallel with the pulmonary artery. That means that the nerve from the vocal cord was damaged another way. I have mucositis from the chemo, so that can be a partial contributor to it. I also had radiation on that side, so that could also contribute to the weak vocal cord. (Oncologist says that it is a good possibility). I am learning a lot about my voice just over the last couple of days. I understand now how to relax my voice so that I get my ‘Thelma’ voice (Marge Simpson’s sister on the Simpsons). I think this is my natural voice and the higher voice is a strained voice. I am going to practice being Thelma and I think over time with some other relaxation techniques, I will get more voice, slowly.
So from all of this, it is good news that the cancer is not directly effecting my voice because anything that the cancer directly effects, is not good. I am glad I went back and got more answers, even if it meant that nasty scope….
My energy has fluctuated a bunch. I just finished a big upswing, today I am tired, but not grumpy. My diet has gone out the window and is a moving target, so don’t even try to please me. The things that I am strict about are milk, red meat, and fresh fruit. I am working on my mucus membranes so I can get that fruit back in. My gut is much much better than it was even a week ago. (whew) The gut is a big deal in this because it is how my body can stay strong.
We have been having house guest fun. Jan, my Aunt, just left yesterday after doing her garden magic to our front yard. This afternoon Andy and I planted 60 someodd plants that Jan helped us pick out and then placed yesterday before she left.
Today is also a big day because Ze’ev just went to overnight camp for the first time. He is gone for 2 weeks with a friend. I miss him already.
Love lot you all
Rebecca
Doctor news: I went to the ENT today to get an understanding of my voice. He explained that my polyp healed fine, that was on the left side. On the right side, my vocal cord is weak. This is not the side that the nerve goes down into the chest and is parallel with the pulmonary artery. That means that the nerve from the vocal cord was damaged another way. I have mucositis from the chemo, so that can be a partial contributor to it. I also had radiation on that side, so that could also contribute to the weak vocal cord. (Oncologist says that it is a good possibility). I am learning a lot about my voice just over the last couple of days. I understand now how to relax my voice so that I get my ‘Thelma’ voice (Marge Simpson’s sister on the Simpsons). I think this is my natural voice and the higher voice is a strained voice. I am going to practice being Thelma and I think over time with some other relaxation techniques, I will get more voice, slowly.
So from all of this, it is good news that the cancer is not directly effecting my voice because anything that the cancer directly effects, is not good. I am glad I went back and got more answers, even if it meant that nasty scope….
My energy has fluctuated a bunch. I just finished a big upswing, today I am tired, but not grumpy. My diet has gone out the window and is a moving target, so don’t even try to please me. The things that I am strict about are milk, red meat, and fresh fruit. I am working on my mucus membranes so I can get that fruit back in. My gut is much much better than it was even a week ago. (whew) The gut is a big deal in this because it is how my body can stay strong.
We have been having house guest fun. Jan, my Aunt, just left yesterday after doing her garden magic to our front yard. This afternoon Andy and I planted 60 someodd plants that Jan helped us pick out and then placed yesterday before she left.
Today is also a big day because Ze’ev just went to overnight camp for the first time. He is gone for 2 weeks with a friend. I miss him already.
Love lot you all
Rebecca
Thursday, May 28, 2009
Tumor Marker drop... again
So it is down to 92! I made a handy dandy chart.
but, i cant get it to load from excel. So what it shows is that the over the first month of chemo my tumor marker dropped from the base of 186 to 161. Then in 1 week it dropped to 125! Three weeks later is where we are at is at 92. :-)
So my uneducated theory is that if I keep on this chemo, I am in good shape for a while. I just hope that I can take a vacation soon because now that the tumor is asymptomatic, the chemo is wiping me out. :-( Right now I am high on steroids and going to Napa for energy work. Yippie!
Love to you all
rebecca
Tuesday, May 26, 2009
End of round 2.
So. First of all, if you leave messages on this, sign them with your name because I do not know who you are all of the time by your sign in name.
It seems to be true that I write mostly during crisis. So no news really is good news...
I am doing pretty well. I am at the end of my second round (month) of chemo. It has been two weeks since I have gone in. I go in again tomorrow for the beginning of the 3rd round. I am doing better than when I started chemo, but I have begun to be chemo tired. It is a drag, and very unpredictable still, but I am letting go of the hope that I am going to continue getting more and more energy. I go get my bloods done today, so I will know what my tumor marker is tomorrow. I will let you all know. We look forward to chemo holidays. Hoping to time them with summer breaks.
We have had constant visitors, which has been nice. Two weekends ago, it was Andy’s brother, then John, a work person with Andy, came and was gone most of the time working. They day John left my cousin David, on my dad’s side, came. It was great to see him and we had fun, just not moving at the pace I wanted to move. I can do some of what I want, but then have to rest. I have managed to get sucked into a Richard Russo book. That is the most complex thing I have read in a while. I am enjoying ‘Bridge of Shadows.’ I take book requests, as I am going to have to get to the library soon.
The garden is an ongoing project. It is doing so well that the next projects are not staring us in the face. We can get creative now. I am looking at companion planting for the things we have in the ground and we are thinking about what the next round of planting is going to be. Already, I am buying less veg. because we have to eat the favas and the artichokes. The lettuce is now ready too…☺
This week is busy. I am starting to offer energy work to others. This is part of my healing and using the ‘energy’ in the universe. It is fascinating how energy work for others is also good for me. This is free, so if you are near by and would like to get worked on, I am starting slowly but would like to talk to you. I am very excited by this.
Love to you all and I hope all of you are having fun doing your thing.
Love love
rebeca
It seems to be true that I write mostly during crisis. So no news really is good news...
I am doing pretty well. I am at the end of my second round (month) of chemo. It has been two weeks since I have gone in. I go in again tomorrow for the beginning of the 3rd round. I am doing better than when I started chemo, but I have begun to be chemo tired. It is a drag, and very unpredictable still, but I am letting go of the hope that I am going to continue getting more and more energy. I go get my bloods done today, so I will know what my tumor marker is tomorrow. I will let you all know. We look forward to chemo holidays. Hoping to time them with summer breaks.
We have had constant visitors, which has been nice. Two weekends ago, it was Andy’s brother, then John, a work person with Andy, came and was gone most of the time working. They day John left my cousin David, on my dad’s side, came. It was great to see him and we had fun, just not moving at the pace I wanted to move. I can do some of what I want, but then have to rest. I have managed to get sucked into a Richard Russo book. That is the most complex thing I have read in a while. I am enjoying ‘Bridge of Shadows.’ I take book requests, as I am going to have to get to the library soon.
The garden is an ongoing project. It is doing so well that the next projects are not staring us in the face. We can get creative now. I am looking at companion planting for the things we have in the ground and we are thinking about what the next round of planting is going to be. Already, I am buying less veg. because we have to eat the favas and the artichokes. The lettuce is now ready too…☺
This week is busy. I am starting to offer energy work to others. This is part of my healing and using the ‘energy’ in the universe. It is fascinating how energy work for others is also good for me. This is free, so if you are near by and would like to get worked on, I am starting slowly but would like to talk to you. I am very excited by this.
Love to you all and I hope all of you are having fun doing your thing.
Love love
rebeca
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