I am currently wishing I could have an easier life, but this life keeps me walking the narrow path that is so important to me. Looks like some time in the beginning of the year I will try the botox thing. It is reversable and will last for a couple of months, so it seems low risk. We got my tumor marker info back recently and my tumor marker jumped another 100 to 339! so, I am changing chemos from Xeloda to Doxil. It is a derivative of Adryomiyacin (sp?). I am supposed to start this week, but cant get a hold of the chemo dept because of vacation hours. I am sure they will be in tomorrow so I can make an appointment. I had that the first time almost 10 years ago. It can affect the heart, so I had a new kind of test, a MUGA. Sounds fun, it isn't too bad. They check my heart by injecting me with a radioactive something and put me by something that looks like an x-ray machine for 10 minutes. Not too invasive. My heart is good right now. That is what has to be watched. This is the last chemo before clinical trials. So then I am into experimental stuff and it is just for the good of science. We will see what happens. I am still finding some alternatives to try...This isn't good news, but it is the story of my health. Luckily, that is not the only story I have.
I went shopping with Merav the other day and we went to a fancy shopping area with Julia, Andy's sister, and Kayla, her daughter. We had a great girls day out shopping. The girls even went to the formal dress department at Macy's and tried on formals. It was too fun! The other day, Merav and I went out with one of her friends and her mom to dinner and a show in sf. See Mr. Yoowho's Holiday online. It was a great show. I usually spend tons of time with Ze'ev but since Merav is growing up, she hasn't had much time for me, so this has been really special. I just got back from spending an hour and 45 minutes with the kids at the downtown library. This time we hit the art and music floor pretty hard. Merav is working on a big 8th grade project, called a Masterworks. She is studying fashion photography. We checked out fiction, comics, music, music books, videos, project books... It was fun. Tonight we are going to continue with the theme for this vacation which is movies and hot chocolate. That is after our dinner of pizza and Caesar salad, made with dressing that has home made olive oil and home grown lemons! The tree is going wild folks! Andy just made the dressing and it has a kick at the back of my throat that comes from the oil. Pretty cool! (Pizza is frozen)
I have been spending a good chunk of time in the office because I have not balanced the check book for a year and we have to apply for aid for school for Ze'ev again. That means knowing what we spent! I have a perverted sense of enjoyment doing this. Putting everything into their categories and then balancing it all out. Then we get to see what we spent over the year and where it went. I do find it calming. It gives us the power to decide what we like, dont like, and how we can have power over our money spending.
Anyhoo... We have been burning most food we have been cooking lately, so I better stop doing this and check the pizzas.
love love
rebecca
Monday, December 27, 2010
Tuesday, December 07, 2010
Dear Dr. Rapa
So... we got a new GP for me as the other one was ineffectual. Our dear friend was this doctor's mentor, so we started with a great recommendation from a great doctor. We went to see Dr. Rapa last week. We arrived and she had reviewed my file and already had some ideas laid out. We went straight from her office to the ENT where they shoved something up my nose to look down my throat. Yes, it was very unpleasant, made worse by having a strider during the test. (not breathing so well) So the reason for all of this, including the strider is that my vocal cords are 'paralyzed'. Andy wrote this letter to Dr. Rapa after we went to the ENT. So read away. The rest is his letter.
Dear Dr Rapa,
Thank you so much for your attention yesterday, it was exactly what I was hoping for. After months of uncertainty and frustration we finally have a reasonable and clear understanding of the cause of Rebecca's symptoms. (Rant about why someone couldn't have worked that out months ago... grrrr)
So I am wandering about the next steps but first I am going to restate my understanding of the situation so that you can correct any misunderstandings I have.
Both Rebecca's vocal cords are suffering from paralysis. While they seems to function reasonably in their 'closed' mode, for speaking and blocking random stuff falling into her lungs; they do not open for breathing. This clearly explains why Rebecca feels, as she so succinctly put it, like she has been breathing through a straw for months.
Dr Cruz offered three options for symptomatic relief; two procedures that would result in loosening the vocal cords slightly (botox or laser). These would 'probably' provide a loosening of the cords providing improved airflow for breathing but potentially effecting speech and the 'blocking' function. The third option he presented was a permanent tracheotomy; a hole at the base of the neck directly into the trachea that bypasses the cords for breathing. This was presented as 'the best' options as it doesn't compromise the vocal cords current functioning any further but provides significant airflow for breathing.
When we pressed Dr Cruz on why Rebecca's vocal cords are paralyzed he made it very clear that is not his problem. So, before we consider any of his options which seem to address symptomatic relief but does not attempt to identify the root cause; should we put some energy into identifying the root cause?
The assumption for root cause seems to be nerve pressure from tumor. I find this assumption a little unsatisfying. Given the separation of paths of the two nerves involved wouldn't it be a huge coincidence that on both sides the tumor just happened to find those nerves to lean on? Should we look for some evidence that this is the case? Presumably those nerves come back together up in the brain somewhere, is it possible that the problem is higher up? As a systems engineer I just find the possibility of 2 separate problems causing symmetrical symptoms unlikely.
This is where I particularly need\want your help. If you tell me that tumor pressure is a reasonable supposition then I will believe you. If you tell me that tracking down the root cause might be intellectually satisfying but will not open any other treatment options or otherwise effect the wider treatment plan, then I will let it go. (if for example the problem is a brain met it probably wouldn't change the vocal cord options but might help inform other decisions).
So what do you think the next steps should be?
Should we go looking for root cause or symptomatic relief?
If we go for symptomatic relief; what are your thoughts on the 3 options and which would you recommend?
Do we HAVE to do anything or can we see if the new chemo reduces tumor mass and the problem reverses itself?
Thanks SO much for indulging my desire to understand better and getting to the end of my email :-)
Andy Dale
Dear Dr Rapa,
Thank you so much for your attention yesterday, it was exactly what I was hoping for. After months of uncertainty and frustration we finally have a reasonable and clear understanding of the cause of Rebecca's symptoms. (Rant about why someone couldn't have worked that out months ago... grrrr)
So I am wandering about the next steps but first I am going to restate my understanding of the situation so that you can correct any misunderstandings I have.
Both Rebecca's vocal cords are suffering from paralysis. While they seems to function reasonably in their 'closed' mode, for speaking and blocking random stuff falling into her lungs; they do not open for breathing. This clearly explains why Rebecca feels, as she so succinctly put it, like she has been breathing through a straw for months.
Dr Cruz offered three options for symptomatic relief; two procedures that would result in loosening the vocal cords slightly (botox or laser). These would 'probably' provide a loosening of the cords providing improved airflow for breathing but potentially effecting speech and the 'blocking' function. The third option he presented was a permanent tracheotomy; a hole at the base of the neck directly into the trachea that bypasses the cords for breathing. This was presented as 'the best' options as it doesn't compromise the vocal cords current functioning any further but provides significant airflow for breathing.
When we pressed Dr Cruz on why Rebecca's vocal cords are paralyzed he made it very clear that is not his problem. So, before we consider any of his options which seem to address symptomatic relief but does not attempt to identify the root cause; should we put some energy into identifying the root cause?
The assumption for root cause seems to be nerve pressure from tumor. I find this assumption a little unsatisfying. Given the separation of paths of the two nerves involved wouldn't it be a huge coincidence that on both sides the tumor just happened to find those nerves to lean on? Should we look for some evidence that this is the case? Presumably those nerves come back together up in the brain somewhere, is it possible that the problem is higher up? As a systems engineer I just find the possibility of 2 separate problems causing symmetrical symptoms unlikely.
This is where I particularly need\want your help. If you tell me that tumor pressure is a reasonable supposition then I will believe you. If you tell me that tracking down the root cause might be intellectually satisfying but will not open any other treatment options or otherwise effect the wider treatment plan, then I will let it go. (if for example the problem is a brain met it probably wouldn't change the vocal cord options but might help inform other decisions).
So what do you think the next steps should be?
Should we go looking for root cause or symptomatic relief?
If we go for symptomatic relief; what are your thoughts on the 3 options and which would you recommend?
Do we HAVE to do anything or can we see if the new chemo reduces tumor mass and the problem reverses itself?
Thanks SO much for indulging my desire to understand better and getting to the end of my email :-)
Andy Dale
Wednesday, December 01, 2010
double update
I wrote this on Nov 26th, last week I guess:
I am scared. There I said it. I am not scared of being dead. I am scared of this damned process I am going through. I dont even know what it is. I dont know if I am dying quickly or not. I know I feel like crap most of the time. no energy, grumpy, hard to breathe, out of breath from moving from one part of the house to another, bored, sad, wanting to do so much and not being able to take care of the basics, angry.
I never know how long each phase of my health/sickness is going to last. I thought I would be done with this already, so I was waiting it out. But it is not going away. I changed the chemos. It took a while, but usually when I start a new chemo, I start feeling better quickly. The breathing, they say, is not related to the cancer. It seems I have created so much stress in my body, that I cannot breathe. That happened before. After moving to Texas, I got asthma. This time, my body went whole hog and it is asthma and I am so tense in my upper body that there is literally no room to breathe. It sucks.
I hate watching you all watching me go through this. It hurts me to see you suffer. But I dont want you to hide your feelings, just as much as I need to not hide mine from you. I am writing this as part of a process to work through the anxiety I have created and release the tension, so that I might breathe well again. blaah blahh blahh. I do not need an outpouring of 'you are so great' and I do not need you to hide your feelings. Just be yourselves and I will try to be true to my sad and miserable self right now. It is a phase. This too will end. As it has before. I will not always be this grumpy. But I have to go through it despite how much it sucks.
In the past, I have called the world and reached out and griped and griped and you have held me. This time, I seem to have gone inward and just dont have energy to call anyone. I know you are there and I know you are holding me, but I have so little social energy that I dont even know what to say. I dont have a lot to give, emotionally, socially.... What I have, I give to the 3 people living through this day by day with me. They are all real troupers. It really sucks for them. They are constantly taking care of whiny me. Just because you have not seen me whine, does not mean it does not happen. I just keep it in a small sphere and they get most of it.
I feel like they are going to suffer more than me. Andy has to deal with everything AND hold down a job. He does so much-physically, emotionally, mentally. It is really unbelievable. I get to lay in bed and not feel up for chores. I have dropped my responsibility to the household a while ago. If I do something, it is a bonus. And I do things sometimes. I do clean a bit. I do cook a little. I can take care of my food most of the time. I can garden a very little. I can do an errand or two here or there. I am not totally incapacitated. Which makes it even more confusing. I look good. I pretty much sound good. I can get out. So what the heck is the problem? It is that I cannot do it very much and we never know what I am up for or when. There is no planning. There are no people over for dinner. Vacations...not likely...Sledding with kids, no way... It just sucks.
Today:
Hi,
So, I have had some good cries and yelling stomping fits and that really helps. I am doing better. All of the doc's agree. I do not know what my tumor marker is yet from having gotten this chemo, but I am healthy enough to start again. yippie (not). I am going to do my best, even though I am a bit nervous about it.
I dont think we are going anywhere for the holidays. If we do it will be a spontaneous road trip. I am in a place now where I think I can live with this again. Not constantly aware of dying and panicking about it. My breathing is still tough. Everyone agrees (all types of docs) that it is not my breathing. I have had one possible explanation of it having to do with tension in my fascia being exaggerated by my body being sick. Like if you have a stiff neck, then you get a cold and the neck feels a lot worse. The cold exaggerates the ache. So the fact that my body has cancer makes the tension worse in my upper body and chest, because that is where I hold my fear and sadness. I am getting some of it out and my whole upper body releases. It feels great for a couple of hours, then tenses up a bit again. I am working on it...
Love to you all.
Rebecca
I am scared. There I said it. I am not scared of being dead. I am scared of this damned process I am going through. I dont even know what it is. I dont know if I am dying quickly or not. I know I feel like crap most of the time. no energy, grumpy, hard to breathe, out of breath from moving from one part of the house to another, bored, sad, wanting to do so much and not being able to take care of the basics, angry.
I never know how long each phase of my health/sickness is going to last. I thought I would be done with this already, so I was waiting it out. But it is not going away. I changed the chemos. It took a while, but usually when I start a new chemo, I start feeling better quickly. The breathing, they say, is not related to the cancer. It seems I have created so much stress in my body, that I cannot breathe. That happened before. After moving to Texas, I got asthma. This time, my body went whole hog and it is asthma and I am so tense in my upper body that there is literally no room to breathe. It sucks.
I hate watching you all watching me go through this. It hurts me to see you suffer. But I dont want you to hide your feelings, just as much as I need to not hide mine from you. I am writing this as part of a process to work through the anxiety I have created and release the tension, so that I might breathe well again. blaah blahh blahh. I do not need an outpouring of 'you are so great' and I do not need you to hide your feelings. Just be yourselves and I will try to be true to my sad and miserable self right now. It is a phase. This too will end. As it has before. I will not always be this grumpy. But I have to go through it despite how much it sucks.
In the past, I have called the world and reached out and griped and griped and you have held me. This time, I seem to have gone inward and just dont have energy to call anyone. I know you are there and I know you are holding me, but I have so little social energy that I dont even know what to say. I dont have a lot to give, emotionally, socially.... What I have, I give to the 3 people living through this day by day with me. They are all real troupers. It really sucks for them. They are constantly taking care of whiny me. Just because you have not seen me whine, does not mean it does not happen. I just keep it in a small sphere and they get most of it.
I feel like they are going to suffer more than me. Andy has to deal with everything AND hold down a job. He does so much-physically, emotionally, mentally. It is really unbelievable. I get to lay in bed and not feel up for chores. I have dropped my responsibility to the household a while ago. If I do something, it is a bonus. And I do things sometimes. I do clean a bit. I do cook a little. I can take care of my food most of the time. I can garden a very little. I can do an errand or two here or there. I am not totally incapacitated. Which makes it even more confusing. I look good. I pretty much sound good. I can get out. So what the heck is the problem? It is that I cannot do it very much and we never know what I am up for or when. There is no planning. There are no people over for dinner. Vacations...not likely...Sledding with kids, no way... It just sucks.
Today:
Hi,
So, I have had some good cries and yelling stomping fits and that really helps. I am doing better. All of the doc's agree. I do not know what my tumor marker is yet from having gotten this chemo, but I am healthy enough to start again. yippie (not). I am going to do my best, even though I am a bit nervous about it.
I dont think we are going anywhere for the holidays. If we do it will be a spontaneous road trip. I am in a place now where I think I can live with this again. Not constantly aware of dying and panicking about it. My breathing is still tough. Everyone agrees (all types of docs) that it is not my breathing. I have had one possible explanation of it having to do with tension in my fascia being exaggerated by my body being sick. Like if you have a stiff neck, then you get a cold and the neck feels a lot worse. The cold exaggerates the ache. So the fact that my body has cancer makes the tension worse in my upper body and chest, because that is where I hold my fear and sadness. I am getting some of it out and my whole upper body releases. It feels great for a couple of hours, then tenses up a bit again. I am working on it...
Love to you all.
Rebecca
Monday, November 08, 2010
Dem's da facts
This is short and sweet, because frankly, I am getting sick of being sick and talking about it. here goes:
So... my tumor marker went up while I was getting my alternative acupuncture treatment. I also got the side effects of difficult breathing and orthostatic hypotension. The modern doc's did not know what to do with it. My regular acupuncturist is really helping. When I first wrote this, this morning, I thought my breathing was fine, but then had to move and go to a chiro apt. Well, it is at least fine when I do not move... The O.H. is better, but I am woozy a bit still. Acupuncturist does not believe that the alternative treatment was not a success. It is still to be seen.
I am going to start a new chemo though. It is a pill that I take 2 times a day for 14 days, then take a week off. It's main side effects are hand and foot syndrome - which is peeling and cracking of my hands and feet- and diarrhea. The doc says it can be very well tolerated as chemos go... So we will see.
Last Friday, I had a flu shot. Unfortunately, it gave me a fever for the weekend. When I recover from that enough to go get my bloods done, I will. When I pass my blood test, I will start this new form of chemo pill. Looks like I will at least try to get them done tomorrow.
Dem's da facts
love to you all
Rebecca
So... my tumor marker went up while I was getting my alternative acupuncture treatment. I also got the side effects of difficult breathing and orthostatic hypotension. The modern doc's did not know what to do with it. My regular acupuncturist is really helping. When I first wrote this, this morning, I thought my breathing was fine, but then had to move and go to a chiro apt. Well, it is at least fine when I do not move... The O.H. is better, but I am woozy a bit still. Acupuncturist does not believe that the alternative treatment was not a success. It is still to be seen.
I am going to start a new chemo though. It is a pill that I take 2 times a day for 14 days, then take a week off. It's main side effects are hand and foot syndrome - which is peeling and cracking of my hands and feet- and diarrhea. The doc says it can be very well tolerated as chemos go... So we will see.
Last Friday, I had a flu shot. Unfortunately, it gave me a fever for the weekend. When I recover from that enough to go get my bloods done, I will. When I pass my blood test, I will start this new form of chemo pill. Looks like I will at least try to get them done tomorrow.
Dem's da facts
love to you all
Rebecca
Saturday, October 30, 2010
this week was Not a blast
This week, I have spent a day in the emergency because the night before, I passed out walking from the bathroom at night. I do not have a pulmonary embolism, or anything else bad that they checked by doing a CT, Chest X-ray, EKG, and blood work. I have Orthostatic Hypotension. We have nicknamed it standy uppy, fally downy-itis. When I stand up, my blood pressure drops signifigantly. So far, I have passed out 2 times and gotten a wicked headache. I am on all sorts of herbs for it, and they are helping slowly.
For my lungs, I am on a steroid inhaler, and that is helping too. So I am slowly recovering. But boy is it boring. Andy wants me to say that he has not noticed me getting better. I think yesterday I was doing better till I waaay over did it. I made Ze'ev's Halloween costume and went to a shindig at his school. I was out and about all day till 4 and then crashed big time. Unfortunately, we had tickets to a show that I missed.
Eating has been hard and I have lost some weight, so I am working on getting soups and stews in me.
I am now done with my 3 week acupuncture experiment and plan on getting my bloods checked at the beginning of next week.
love to you all.
For my lungs, I am on a steroid inhaler, and that is helping too. So I am slowly recovering. But boy is it boring. Andy wants me to say that he has not noticed me getting better. I think yesterday I was doing better till I waaay over did it. I made Ze'ev's Halloween costume and went to a shindig at his school. I was out and about all day till 4 and then crashed big time. Unfortunately, we had tickets to a show that I missed.
Eating has been hard and I have lost some weight, so I am working on getting soups and stews in me.
I am now done with my 3 week acupuncture experiment and plan on getting my bloods checked at the beginning of next week.
love to you all.
Tuesday, October 26, 2010
Meee and my luuuungs (sing to Me and my Shadow)
Hi,
so... I have been having some trouble breathing. It started two weeks ago right after chemo. It is not a standard side effect, so who knows... Anyway. I have been doing the acupuncture 3 times a week for the last two weeks and energy work the other two days. That has been holding the breathing problem at bay and working significantly on my liver, in a good way. By Friday, I was doing better. Sat, I took it easy, But Sunday was the Makers Fair. I took it easy, but still did the whole day. We had a booth there for sunflower seed oil and oil production. It was really fun, but wiped me out. By 7 when we got home, I was fried. My upper body tensed up and my breathing was worse. Mond. We went to see my oncologist. He said "I eyeball good". Quite the complement from him, but means that I do not look like I am really in bad shape. As many of you have said, I look good... go figure. My oxygen levels in my blood were better than his! (We were testing to make sure the machine was on, so he tested himself tool :-)) He did not hear anything in my lungs that sounded like cancer and I can breathe deeply, just very slowly. The decision is that my asthma has kicked in again. For folks that have not known me since childhood, I got asthma in 4th grade and got it to calm down by college.
So. all of my inhalers, that I tried before going to the doc, were all expired by years. I got new ones yesterday, both regular and steroid. I am breathing much better now....but... Starting last night, every time I stand up, I start to pass out. It has happened to me before, mostly in the middle of the night going to the bathroom, but not like this. So I am taking it super easy and not getting up unless I really need to. I am going to be asking for more help on driving needs these days, including getting me places. I do not know how long this is going to last. Hopefully, only a couple of days.
Life is very interesting. It really has lots of unusual twists and turns. Hope yours is going well.
love love
rebecca
so... I have been having some trouble breathing. It started two weeks ago right after chemo. It is not a standard side effect, so who knows... Anyway. I have been doing the acupuncture 3 times a week for the last two weeks and energy work the other two days. That has been holding the breathing problem at bay and working significantly on my liver, in a good way. By Friday, I was doing better. Sat, I took it easy, But Sunday was the Makers Fair. I took it easy, but still did the whole day. We had a booth there for sunflower seed oil and oil production. It was really fun, but wiped me out. By 7 when we got home, I was fried. My upper body tensed up and my breathing was worse. Mond. We went to see my oncologist. He said "I eyeball good". Quite the complement from him, but means that I do not look like I am really in bad shape. As many of you have said, I look good... go figure. My oxygen levels in my blood were better than his! (We were testing to make sure the machine was on, so he tested himself tool :-)) He did not hear anything in my lungs that sounded like cancer and I can breathe deeply, just very slowly. The decision is that my asthma has kicked in again. For folks that have not known me since childhood, I got asthma in 4th grade and got it to calm down by college.
So. all of my inhalers, that I tried before going to the doc, were all expired by years. I got new ones yesterday, both regular and steroid. I am breathing much better now....but... Starting last night, every time I stand up, I start to pass out. It has happened to me before, mostly in the middle of the night going to the bathroom, but not like this. So I am taking it super easy and not getting up unless I really need to. I am going to be asking for more help on driving needs these days, including getting me places. I do not know how long this is going to last. Hopefully, only a couple of days.
Life is very interesting. It really has lots of unusual twists and turns. Hope yours is going well.
love love
rebecca
Tuesday, October 12, 2010
For the folks who want to be in the know!
So. It has not been all quiet on this western front. I had a spike in my tumor marker. My CT scan came back with the lung shrunk, which I did not expect because I have not been breathing great, and the liver grown. The liver can lose around 80% of function before being symptomatic and I am still at around 10-15%.
My oncologist wanted to change chemo's has willingly postponed it. Someone, bless her, has brought it to my attention that I have been struggling around the times of the spring and fall equinoxes. It turns out that in Chinese medicine each organ has a time of year that the energy is stronger. This goes for time of day as well. So, the fall equinox is during the time of the lung and the spring is in time of the liver. All very fascinating. The data does not process precisely as I wish it would. However, 5 of the 8 peaks in my tumor marker are around the equinoxes. 2 of the equinoxes do not have data around them.... So there is a chance that: The chemos themselves did not stop working entirely, but my tumor marker went up, so we got a ct and changed chemo before we could see if it went back down. There is one chemo that it is blatantly not the case. But the others, maybe....
With this information, I am working to take care of my liver, as it is more consistently a problem than my lungs, it seems. I am going to work intensively with my Chinese doc's (yes, I have two of them working together for me) for three weeks. I will go to them 3 days on then 4 days off. They are hoping to change the direction of the cancer without me changing chemos. I want to make sure I get the most out of the chemos so that I do not run out of chemotherapy options. This will start next week, but because of this, I am going to change my chemo schedule and go on Fridays starting tomorrow. That is going to mess with my weekends, but it is just for a short time. Ironically, those weekends are the Underground Market (where Andy is selling his oil), the Synagogue retreat ( I am going with the kids....), and I think the Maker's Fair where Andy has a booth for showing how to make oil and perhaps selling oil presses. I will take it easy, but also hope to support Andy through all of this. Yes, life is crazy and I will take care of myself, I promise. I am actually getting much better at it. I hope you are too.
Since I wrote that last bit, I have changed the timing of my chemo. I am going on Mondays for the next couple of weeks. So that was yesterday. I started the new acupuncture regime today. To early to say anything. The Underground Market was really fun and we sold a bunch of the oil. We learned how to work smarter, not harder, by the end of the evening. So next time we will not be as frantic.
I will try to be more communicative but I feel like my life is a roller coaster and I know you all want to be on it with me, but it does not feel right to constantly jerk your collective chains. You know that I am sick. You know that my health fluctuates and that I am very very slowly getting worse, but there are times that I get better too. At least I am getting worse slowly. That is as good as it gets for me. In the mean time, I manage to have fun and get on with a bit of life.
love love
rebecca
My oncologist wanted to change chemo's has willingly postponed it. Someone, bless her, has brought it to my attention that I have been struggling around the times of the spring and fall equinoxes. It turns out that in Chinese medicine each organ has a time of year that the energy is stronger. This goes for time of day as well. So, the fall equinox is during the time of the lung and the spring is in time of the liver. All very fascinating. The data does not process precisely as I wish it would. However, 5 of the 8 peaks in my tumor marker are around the equinoxes. 2 of the equinoxes do not have data around them.... So there is a chance that: The chemos themselves did not stop working entirely, but my tumor marker went up, so we got a ct and changed chemo before we could see if it went back down. There is one chemo that it is blatantly not the case. But the others, maybe....
With this information, I am working to take care of my liver, as it is more consistently a problem than my lungs, it seems. I am going to work intensively with my Chinese doc's (yes, I have two of them working together for me) for three weeks. I will go to them 3 days on then 4 days off. They are hoping to change the direction of the cancer without me changing chemos. I want to make sure I get the most out of the chemos so that I do not run out of chemotherapy options. This will start next week, but because of this, I am going to change my chemo schedule and go on Fridays starting tomorrow. That is going to mess with my weekends, but it is just for a short time. Ironically, those weekends are the Underground Market (where Andy is selling his oil), the Synagogue retreat ( I am going with the kids....), and I think the Maker's Fair where Andy has a booth for showing how to make oil and perhaps selling oil presses. I will take it easy, but also hope to support Andy through all of this. Yes, life is crazy and I will take care of myself, I promise. I am actually getting much better at it. I hope you are too.
Since I wrote that last bit, I have changed the timing of my chemo. I am going on Mondays for the next couple of weeks. So that was yesterday. I started the new acupuncture regime today. To early to say anything. The Underground Market was really fun and we sold a bunch of the oil. We learned how to work smarter, not harder, by the end of the evening. So next time we will not be as frantic.
I will try to be more communicative but I feel like my life is a roller coaster and I know you all want to be on it with me, but it does not feel right to constantly jerk your collective chains. You know that I am sick. You know that my health fluctuates and that I am very very slowly getting worse, but there are times that I get better too. At least I am getting worse slowly. That is as good as it gets for me. In the mean time, I manage to have fun and get on with a bit of life.
love love
rebecca
Monday, September 27, 2010
No news is good news
So news... is not good... Rebecca has been feeling worse for a while and we have both been worried that this chemo is no longer being effective. We just got this weeks tumor marker test results and they have jumped back up to 140 (below 40 being normal and last weeks being in the 80's).
The good news... we get to go see Dr Gordon, have some more tests, decide what to do next... nice together time.
Watch this space.
The good news... we get to go see Dr Gordon, have some more tests, decide what to do next... nice together time.
Watch this space.
Wednesday, September 08, 2010
Update
It has been largely silent here on the blog and whenever we are asked how Rebecca is doing we say 'fine'. What are you going to say? Part of the problem is she looks healthy enough and it’s not like anything dramatic has changed. The problem is she feels like crap a lot of the time. Half the time she isn’t healthy enough to get her chemo… That’s always a fun puzzle to workout, how is one mean to feel about that?
She had a full chemo last week and spent the next 4 days laid-up with a fever. Today she did not get her scheduled chemo as her blood counts were not OK. Next week she was meant to have an off week but now she needs to try to have the chemo. Meanwhile her ‘tumor markers’ continue to fluctuate. Last year at this time they were 64; this year they are 91. (39 is normal).
I am very fortunate that I get to work from home and rarely have to go on business trips so I get to support Rebecca a lot more than many working folks could. However, next week I have a series of meetings in Ohio that I really need to be at. Unfortunately this includes being in Ohio over the weekend (of the 20th) and into the next week. I will be gone from Monday the 13th till Tuesday 21st. We will need help! We will post what we need on the Lotsa Helping Hands site but wanted to give you all this heads-up. It’s tough, Rebecca looks like she is doing so well, but generally feels pretty bad, she can ‘fake it’ but that really isn’t good for her and she pays a heavy price.
So despite the fact that we keep saying everything is ‘fine’ and Rebecca looks so good… we need to ask for help, again.
She had a full chemo last week and spent the next 4 days laid-up with a fever. Today she did not get her scheduled chemo as her blood counts were not OK. Next week she was meant to have an off week but now she needs to try to have the chemo. Meanwhile her ‘tumor markers’ continue to fluctuate. Last year at this time they were 64; this year they are 91. (39 is normal).
I am very fortunate that I get to work from home and rarely have to go on business trips so I get to support Rebecca a lot more than many working folks could. However, next week I have a series of meetings in Ohio that I really need to be at. Unfortunately this includes being in Ohio over the weekend (of the 20th) and into the next week. I will be gone from Monday the 13th till Tuesday 21st. We will need help! We will post what we need on the Lotsa Helping Hands site but wanted to give you all this heads-up. It’s tough, Rebecca looks like she is doing so well, but generally feels pretty bad, she can ‘fake it’ but that really isn’t good for her and she pays a heavy price.
So despite the fact that we keep saying everything is ‘fine’ and Rebecca looks so good… we need to ask for help, again.
Thursday, July 01, 2010
The News
The news.
Everybody wants the updates... It has been so long since there was really any news fit to print. Even my facebook updates are few and far between, as well as bland. Well, now there is real news. It is mixed. First of all, the good bit. The chemo seems to be working as my tumor marker went from 104 to 85 in 3 weeks. This is very good. It has not been this low for a few months! So. the downside is that one of the main side effects of this chemo is that I actually have low blood counts for the first time ever. That means that I am susceptible to infection and this week it meant that I was not strong enough to get my chemo. That in itself is mixed news. Not well enough to tolerate it, but I don't have to get it... You decide if you are happy for me or concerned. It could go either way. It scared me at first as this has never happened before, but no one else seems particularly freaked out by it, so I am not. They will check my bloods again next week and assuming that my bone marrow has gotten a jump start again, I will go back to chemo. In the mean time, my acupuncturist got me a mushroom drink that builds blood. And it does not taste godawful. That is good. Without chemo, my taste buds are back and I am enjoying the food I eat more than I was for a while.
This summer has been really slow. The first week of it, Merav was out of town with a friend's family in Tahoe. This, the second week, Ze'ev is at the beach with Dad, Amy and Abe. Next week we will have two kids in the house, but Ze'ev will be in a full time camp. For the last couple of days, Merav and I have gone to a nearby pottery studio and made a bunch of things on the wheel. It was sooo much fun, but I had my bloods done twice. Once the morning before and I failed that test so they wanted to check again the next day. The results were worse, so I guess I kinda over did it.....So, now I am on self imposed couch rest. I will hopefully do some projecty stuff in the yard today, but hope to crank through a few books that we have from the library too. I have plans to see a friend this evening, so I have to save some energy.
So... that is my news... What about yours? Go ahead and e-mail me with what is going on in your life. As you can tell, I am in a fairly good if not edgy mood lately.
love love
Rebecca
Everybody wants the updates... It has been so long since there was really any news fit to print. Even my facebook updates are few and far between, as well as bland. Well, now there is real news. It is mixed. First of all, the good bit. The chemo seems to be working as my tumor marker went from 104 to 85 in 3 weeks. This is very good. It has not been this low for a few months! So. the downside is that one of the main side effects of this chemo is that I actually have low blood counts for the first time ever. That means that I am susceptible to infection and this week it meant that I was not strong enough to get my chemo. That in itself is mixed news. Not well enough to tolerate it, but I don't have to get it... You decide if you are happy for me or concerned. It could go either way. It scared me at first as this has never happened before, but no one else seems particularly freaked out by it, so I am not. They will check my bloods again next week and assuming that my bone marrow has gotten a jump start again, I will go back to chemo. In the mean time, my acupuncturist got me a mushroom drink that builds blood. And it does not taste godawful. That is good. Without chemo, my taste buds are back and I am enjoying the food I eat more than I was for a while.
This summer has been really slow. The first week of it, Merav was out of town with a friend's family in Tahoe. This, the second week, Ze'ev is at the beach with Dad, Amy and Abe. Next week we will have two kids in the house, but Ze'ev will be in a full time camp. For the last couple of days, Merav and I have gone to a nearby pottery studio and made a bunch of things on the wheel. It was sooo much fun, but I had my bloods done twice. Once the morning before and I failed that test so they wanted to check again the next day. The results were worse, so I guess I kinda over did it.....So, now I am on self imposed couch rest. I will hopefully do some projecty stuff in the yard today, but hope to crank through a few books that we have from the library too. I have plans to see a friend this evening, so I have to save some energy.
So... that is my news... What about yours? Go ahead and e-mail me with what is going on in your life. As you can tell, I am in a fairly good if not edgy mood lately.
love love
Rebecca
Friday, May 28, 2010
The Details
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
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
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
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