Tumor marker down from 421 to 261! It has gone 714 to 421 to 261 in 2 months. This is very good. Normal, that is, no cancer, is 39 and below. I have not been there for a few years, but I would like to see it get down to the 100's. I am using this to get ok with going for chemo today. I feel pretty good, so it is hard to let that go... oh well...At least the steroids will keep me pumping for a couple of days.
love love
rebecca
Wednesday, April 13, 2011
Thursday, April 07, 2011
April Update
I had a CT Scan last week and it came out representative of my last blood test. The liver cancer has shrunk and the lung is stable and not doing much. I have been dealing with heat in my hands which is a toxicity response to the cancer. Because it was still going on this week, the doc postponed chemo for a week. YAY!!! so I have a week off. I feel ok, just a bit tired but glad to have the chemo break.
Have some visitors this weekend, so I am laying low and hanging with them.
love to you all!
love love
rebecca
Have some visitors this weekend, so I am laying low and hanging with them.
love to you all!
love love
rebecca
Thursday, March 10, 2011
the latest
So, I had chemo yesterday. They give me steroids when I do it and I already had some energy, so now I am bouncing off the walls! It should calm down in a day or two... The good news is that my tumor marker went from 714 to 412! That is in the right direction very quickly. That was in one month.
Andy started planting seedlings today. I am going to go rest and try not to buzz around the house.
love to you all.
rebecca
Andy started planting seedlings today. I am going to go rest and try not to buzz around the house.
love to you all.
rebecca
Tuesday, March 01, 2011
we are back
Hi all,
We are back from Puerto Rico. It was a lovely and restful vacation. We did not do a ton other than hang out with the Dales East (Andy's brother's family), go to the beach, pool, out to eat, and rest around the amazing house we were in. I (Rebecca) mostly hung out on the couch and whipped through quite a few books. It was good to have down time and know that the family was not waiting for me, but out having lots of fun. We went out in the world a bit. We found the local health food store to get food for me. That was a good adventure. Andy went with family to the rain forest. We had a golf cart to get around and there were lots of friends for Ze'ev there; lizards, bugs, and huge iguanas. He even managed to bug one of the smaller ones (the size of his forearm) into biting him. He was very proud of it.
Travel went well and we all returned rested for a change. Usually it is easy to come back from vacation needing a vacation, but with the r & r we got we were in good shape the day after we returned. I am now getting tired from doing and doing since I got home. I did not realize how much I take care of when I am home and I need to pace myself. The acupuncturist said that I did not over do it on vacation which is really good. I did not have any treatments while I was there, so I came back weaker than when I left, but no damage was done. This is good.
Just thought you should know, we did it. We might not do it again, but we did it.
love to all.
rebecca
We are back from Puerto Rico. It was a lovely and restful vacation. We did not do a ton other than hang out with the Dales East (Andy's brother's family), go to the beach, pool, out to eat, and rest around the amazing house we were in. I (Rebecca) mostly hung out on the couch and whipped through quite a few books. It was good to have down time and know that the family was not waiting for me, but out having lots of fun. We went out in the world a bit. We found the local health food store to get food for me. That was a good adventure. Andy went with family to the rain forest. We had a golf cart to get around and there were lots of friends for Ze'ev there; lizards, bugs, and huge iguanas. He even managed to bug one of the smaller ones (the size of his forearm) into biting him. He was very proud of it.
Travel went well and we all returned rested for a change. Usually it is easy to come back from vacation needing a vacation, but with the r & r we got we were in good shape the day after we returned. I am now getting tired from doing and doing since I got home. I did not realize how much I take care of when I am home and I need to pace myself. The acupuncturist said that I did not over do it on vacation which is really good. I did not have any treatments while I was there, so I came back weaker than when I left, but no damage was done. This is good.
Just thought you should know, we did it. We might not do it again, but we did it.
love to all.
rebecca
Tuesday, February 08, 2011
Living
Yesterday, I saw both my oncologist and acupuncturist and they both welcomed me back to the land of the living. I have a sick liver that is now functioning, compared to a sick liver that was not functioning at all. It was all a very happy medical day.
I have been being a vegan, but been told I can eat white, not fatty fish. So I am hoping to start doing so soon as well as bringing healthy oils back into my diet. Luckily, I am married to mr. healthy oils guy. So we have great options in the house. Today, I also managed to go out and have lunch with a friend at a cafe. I managed. I did have a choking session due to my darned vocal cords not closing and getting some water in my lungs, but when I got home, I was not complete toast. Out all day... from 9am to about 2:30! Very exciting.
We are planning our trip to Puerto Rico with the Dales East and are very excited about it. Looks like I am no longer on the fast track out of here. Someone mentioned that I have nine lives, I have to count to see how much I have left. As it stands, right now I feel like any time I have is all bonus. This week, I have chemo on Wed and my dad is coming to visit on Thurs through Sun. We then leave on next Thurs. Luckily, we have a great house and chicken sitter lined up.
love love
rebecca
I have been being a vegan, but been told I can eat white, not fatty fish. So I am hoping to start doing so soon as well as bringing healthy oils back into my diet. Luckily, I am married to mr. healthy oils guy. So we have great options in the house. Today, I also managed to go out and have lunch with a friend at a cafe. I managed. I did have a choking session due to my darned vocal cords not closing and getting some water in my lungs, but when I got home, I was not complete toast. Out all day... from 9am to about 2:30! Very exciting.
We are planning our trip to Puerto Rico with the Dales East and are very excited about it. Looks like I am no longer on the fast track out of here. Someone mentioned that I have nine lives, I have to count to see how much I have left. As it stands, right now I feel like any time I have is all bonus. This week, I have chemo on Wed and my dad is coming to visit on Thurs through Sun. We then leave on next Thurs. Luckily, we have a great house and chicken sitter lined up.
love love
rebecca
Saturday, January 29, 2011
The good, the bad and the itchy!
I guess I am going to go a bit out of order, but here goes. Yesterday, I woke up with a fine itchy rash on various bits of me, behind my knees, forearms, belly... I did something that I don't usually do. I contacted the doctor immediately, not waiting to see what would happen. The kaiser doc was concerned that it might be my liver going into failure, so I got an early blood test. I did research online and it fits a side effect of my chemo perfectly. So here is the good: my bilirubin (liver function test) is NORMAL! That does not mean I am out of the woods here, but it means that my liver is functioning better. It is also the test that would tell them if I would get chemo on Feb 9th or not. The verdict is most probably 'yes' at this point. That is part of the bad. I am on a half dose of chemo right now. If my liver function is that good, I will get a full dose, so I am kinda scared about what the side effects will be like.
oh.. and as for that Texas comment. We are not going to Texas. I just used the word 'y'all' in that post and said I talk like that because I lived in Texas. We are supposed to try to go to Puerto Rico! It is a trip with Andy's brother's family. It might happen now... I have to wait and see.
The other exciting news is that on Feb 9th, the same day as my next dose of chemo, Andy will be pledging allegiance to the flag and get his 3rd citizenship.
love love
rebecca
oh.. and as for that Texas comment. We are not going to Texas. I just used the word 'y'all' in that post and said I talk like that because I lived in Texas. We are supposed to try to go to Puerto Rico! It is a trip with Andy's brother's family. It might happen now... I have to wait and see.
The other exciting news is that on Feb 9th, the same day as my next dose of chemo, Andy will be pledging allegiance to the flag and get his 3rd citizenship.
love love
rebecca
Friday, January 28, 2011
Subscribing to the blog...
There is now a little 'subscribe' section in the top right corner. Hopefully you can use that to get automatic updates from the blog... please let me know one way or the other.
Wednesday, January 26, 2011
The latest
So, I have been eating my new diet, taking my new herbs, seeing my primary acupuncturist and energy worker... and I think it is working. I have no definitive news from my doc, but my liver does not hurt. My belly does not hurt, I am eating a little (still not enough, but some). I have a little more energy. Today, I made my own miso soup. That is the first time I have fed myself more than a bowl of cereal in a long time.
As my acupuncturist said today comparing my state to Monday. I am "much much better. Still really terrible, but much better."
That is the scoop.
As my acupuncturist said today comparing my state to Monday. I am "much much better. Still really terrible, but much better."
That is the scoop.
Sunday, January 23, 2011
update
So, the weekend is over. I am doing a bit better than I was last week. Bob the acupuncturist is back in town, so I will see him tomorrow for the first time in a couple of months. My oncologist, when I saw him last week, said the magic words for me 'there is nothing you can do to support your liver'. Them's fighin' words. Of course that was exactly what I needed to hear. I did a bunch of research and found a couple of supplements and a liver friendly diet and I am generally feeling better. Better enough to get bored and grumpy.
Today, I stared a new therapy. It is called Quantum Pulse. It is a machine that one of my chemo nurses has at her house. She has invited me to come use it anytime and has given me a key to go in when she is not there. Thera are some amazingly good people in this world. You can research it on the internet, but basically it works on the assumption that the human body has an electrical charge of a certain type that is healthy. It creates that charge to reflect onto your body. Kinda telling it how to be healthy. I am going to try to go every day. Got not much to lose. She also has a detox footbath I did. I think it was too much, because my liver has been hurting today more and I am grumpy. I will lay off the foot bath, but keep trying the machine as it seems fairly gentle.
The kids are keeping busy and we are helping that to happen, so that is good. Andy and I are a bit stressed, what a shock, but are together. Tomorrow, Andy is going to go to work for a bit. He took all of last week off. So that will be a different rhythm. I have a couple of good books. Ever read Christopher Moore? He is really funny!
love love to you all.
Today, I stared a new therapy. It is called Quantum Pulse. It is a machine that one of my chemo nurses has at her house. She has invited me to come use it anytime and has given me a key to go in when she is not there. Thera are some amazingly good people in this world. You can research it on the internet, but basically it works on the assumption that the human body has an electrical charge of a certain type that is healthy. It creates that charge to reflect onto your body. Kinda telling it how to be healthy. I am going to try to go every day. Got not much to lose. She also has a detox footbath I did. I think it was too much, because my liver has been hurting today more and I am grumpy. I will lay off the foot bath, but keep trying the machine as it seems fairly gentle.
The kids are keeping busy and we are helping that to happen, so that is good. Andy and I are a bit stressed, what a shock, but are together. Tomorrow, Andy is going to go to work for a bit. He took all of last week off. So that will be a different rhythm. I have a couple of good books. Ever read Christopher Moore? He is really funny!
love love to you all.
Thursday, January 20, 2011
Deep breath
Rebecca wrote a beautiful blog post about what's going on and how she's doing and then through a series of unfortunate strokes of her finger, as she learns to master her new iPad, managed to erase the message irrevocably. After spending a while trying to recover the message I get to write my version of events while she goes and has a rest.
Earlier this week, her recurrent fever and pain got to the level that we again ended up at our favorite ER. After a series of test, that took WAY too long, the doctors confirmed that there was nothing wrong, other than the cancer. What they found was that the cancer in the liver has progressed rapidly and aggressively. The pain she has been experiencing is pressure from her growing liver pressing on her stomach. The fever is a common symptom of this type of tumor. The good news is that with this understanding of what is going on the doctors have put her on 'pain meds' that have greatly reduced her symptoms. The reason 'pain meds' gets put in quote marks is because it is worth noting that she continues to be an incredible light weight when it comes to drugs and her pain is being managed by doses of ibuprofen.
Given the relief from her symptoms the last couple of days have actually been really nice. She's been up and about and even playing ping-pong with the kids on our newly converted dining room table. She's also having fun playing with her new iPad... did I mention she got an iPad?
Now, as ever, we get to wait. Early in February she will have more tests and we will find out if the new chemo is helping. If it is then, great, we are on track for some unknown period of time. If the new chemo does not slow, stop or reverse the progression of the disease in the liver, to quote the Dr.: "The decline can be precipitous'. So, with an incredible sense of deja-vu we know that "it could be 2 months, or it could be 2 years".
If we get the 2 month version; it's meant to be as good a way as any to go. A growing fatigue, a slowing of the mind and body until she falls asleep and doesn't wake up again. There are definitely worse ways to go.
We will keep you updated if anything changes and when we get the next results in early Feburary. Meanwhile, we continue to enjoy each day together as a family to the best of our ability to enjoy... and we really hope you will do the same!
Love you all,
Andy
Earlier this week, her recurrent fever and pain got to the level that we again ended up at our favorite ER. After a series of test, that took WAY too long, the doctors confirmed that there was nothing wrong, other than the cancer. What they found was that the cancer in the liver has progressed rapidly and aggressively. The pain she has been experiencing is pressure from her growing liver pressing on her stomach. The fever is a common symptom of this type of tumor. The good news is that with this understanding of what is going on the doctors have put her on 'pain meds' that have greatly reduced her symptoms. The reason 'pain meds' gets put in quote marks is because it is worth noting that she continues to be an incredible light weight when it comes to drugs and her pain is being managed by doses of ibuprofen.
Given the relief from her symptoms the last couple of days have actually been really nice. She's been up and about and even playing ping-pong with the kids on our newly converted dining room table. She's also having fun playing with her new iPad... did I mention she got an iPad?
Now, as ever, we get to wait. Early in February she will have more tests and we will find out if the new chemo is helping. If it is then, great, we are on track for some unknown period of time. If the new chemo does not slow, stop or reverse the progression of the disease in the liver, to quote the Dr.: "The decline can be precipitous'. So, with an incredible sense of deja-vu we know that "it could be 2 months, or it could be 2 years".
If we get the 2 month version; it's meant to be as good a way as any to go. A growing fatigue, a slowing of the mind and body until she falls asleep and doesn't wake up again. There are definitely worse ways to go.
We will keep you updated if anything changes and when we get the next results in early Feburary. Meanwhile, we continue to enjoy each day together as a family to the best of our ability to enjoy... and we really hope you will do the same!
Love you all,
Andy
Monday, January 17, 2011
ugh
day two of intermittent fever. yuck. This chemo does not come with fever, so I guess my body is trying to get something out. I will talk to doc's tomorrow. Maybe get an answer, maybe just drugs,maybe not... Dont hold your breath for any answers.
love love
rebecca
love love
rebecca
Wednesday, January 12, 2011
day 1
Day 1. That is what the chemo nurses call the first day of a chemo round. This chemo I get only on day one. The round lasts for 28 days. So I am going to have a variety of phases to go through before I start. There are days that my bloods may be low and I am susceptible to infection. Days that I am more or less hungry.
Today: is day 3 of no fever, so it looks like I am over the flu. My biliruben was high in my blood so that means that my liver is having a rough time of it. Since my liver has to break down the chemo (that is also hard on the liver) they only gave me a half dose today of the new chemo. They also gave me a steroid that helps with nausea and lo an behold, I came home and ate more than usual. It felt really good. My goal is to eat a bunch more. I am down to 149 and fit in my cousin's skinny jeans again. They were on the shelf for a year...
I am glad I am on this chemo and think it is going to help. There are lots of side effects and most people do not get all of them. Nausea and burning mouth and hand/foot syndrome seem to be most common. I could lose my hair, but we will just wait and see. I am not cutting it off this time. The good news is that none of the side effects kicked in while I was getting it. That has happened before.
For those of you with iphones or ipod touches. Plants vs. Vampires took me through the whole chemo time. (Its a goofy game)
I am a bit hyped on steroids while being tired, so I am going to rest.
love to you all
rebecca
Today: is day 3 of no fever, so it looks like I am over the flu. My biliruben was high in my blood so that means that my liver is having a rough time of it. Since my liver has to break down the chemo (that is also hard on the liver) they only gave me a half dose today of the new chemo. They also gave me a steroid that helps with nausea and lo an behold, I came home and ate more than usual. It felt really good. My goal is to eat a bunch more. I am down to 149 and fit in my cousin's skinny jeans again. They were on the shelf for a year...
I am glad I am on this chemo and think it is going to help. There are lots of side effects and most people do not get all of them. Nausea and burning mouth and hand/foot syndrome seem to be most common. I could lose my hair, but we will just wait and see. I am not cutting it off this time. The good news is that none of the side effects kicked in while I was getting it. That has happened before.
For those of you with iphones or ipod touches. Plants vs. Vampires took me through the whole chemo time. (Its a goofy game)
I am a bit hyped on steroids while being tired, so I am going to rest.
love to you all
rebecca
Friday, January 07, 2011
Its (as) official (as it gets)
Looks like a I have a flu. Simply a worse version of what most folks have right now. My appetite has started to go up again, so eating is happening.
I have chemo next Wed at 10 am. I will go no matter what. It should not be a problem.
Thats all she wrote.
love love
rebecca
I have chemo next Wed at 10 am. I will go no matter what. It should not be a problem.
Thats all she wrote.
love love
rebecca
Thursday, January 06, 2011
your fast paced news channel for health
So, I dont have pneumonia. Dunno what it is and am working with one doc to try to figure it out and the other doc to think about starting chemo while the problem still exists, or to wait...
Keep you posted.
love love
rebecca
Keep you posted.
love love
rebecca
Wednesday, January 05, 2011
quickie update
Hi folks.
So the chemo keeps getting postponed because I have a fever. I think it is pneumonia, but no one knows for sure. That is how crappy I feel though. In bed. Low fever, up to 100.3 that comes and goes for a couple of days at a time. No appetite. Yep, very skinny again. This is what happened 2 years ago for months before I went to the doc. I am not waiting this time. The doc's did not respond today, which is fine as I had acupuncture and two trips out would have done me in. Tomorrow I will push for a chest x-ray to get the scoop.
that's it right now.
love love
rebecca
So the chemo keeps getting postponed because I have a fever. I think it is pneumonia, but no one knows for sure. That is how crappy I feel though. In bed. Low fever, up to 100.3 that comes and goes for a couple of days at a time. No appetite. Yep, very skinny again. This is what happened 2 years ago for months before I went to the doc. I am not waiting this time. The doc's did not respond today, which is fine as I had acupuncture and two trips out would have done me in. Tomorrow I will push for a chest x-ray to get the scoop.
that's it right now.
love love
rebecca
Monday, December 27, 2010
Quite the way to start a new year...
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
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
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.
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