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

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

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.

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.