Thursday, January 22, 2009

Good news

Rebecca went to the Ear Nose and Throat guy yesterday and we discovered that the squeaky voice IS NOT due to tumor pressure on her Recurrent Laryngeal Nerve! (which is what both Dr Gordon and I thought it was). It turns out she has a polyp on her vocal cord.... This has nothing to do, directly, with the cancer. The indirect connection is that the polyp MAY have formed due to excessive coughing.

The polyp can be removed in a 10 minute 'procedure'. But then Rebecca will not be able to talk for a week (make all the jokes you want.. I'm not saying a thing.)

We are assuming that this will reduce the urgency to drop the faslodex and go to chemo. We need to talk to Dr Gordon about it but it was this concern that was driving the conclusion that the faslodex was not being effective. As always... Rebecca was right.

Wednesday, January 21, 2009

and then...

So. After the bad CT scan, we have found out that there is a small chance that the Faslodex is causing dead cancer cells to slough off into my blood. That is a sign of more success. The oncologist does not think that is the case in my situation. My jury is out until I talk to my Tibetan and Chinese doctors who work together. I realize that my health may not be particularly spectacular, but that is not going to hinder me from getting all of the perspectives. That is going to happen late next week. I will be sure to keep you posted for better or for worse.

This weekend was however, spectacular. We went up to Peter’s land outside of Healdsburg. It is the same place that I had my B’day party. It was just the four of us, Peter and his wife Solange. We had good food, lots of laughter, bonfire, tree planting, hiking adventures, kids driving 4 wheelers around to the grape fields, more food, slow mornings, learning about and watching the milling of big ole trees that were felled and left to rot by previous owners (it is not evil). Peter and Solange are very very funny and full of good stories. The stars were plentiful and very close. It was really really cool. It felt like more of a break than we have all had together in a long time. I guess since August when we were last there. It is very nice land.

However, no fun weekend goes unpunished. I got poison oak… So now I am on steroids and have a very itchy right forearm. I hope that it does not spread and I keep the itching under control with my own hot water scratching method. I put my arm under a stream of very hot water and let it itch to high heaven for about 5 minutes, and then it just stops itching. Its great because I can do it a few times a day and the rest of the time, I don’t itch.

Love to you all and may we all shoulder what ever we get as best we can.


Friday, January 16, 2009

An apple a day...?

We just came back from Dr. Gordon where we got the results from the tests Rebecca had earlier this week. The news isn’t very good.

The CT results are mixed, some shrinkage and some growth of tumor. The blood levels have gone up a lot… From 58 to 83 to 129. The combined reading of these results is not definitive but ‘probably’ indicates that the new drug, Faslodex, is not being effective.

The options that we are considering are:

Give Faslodex more time and check in again in 2 months.


Start chemo

The first chemo that would be on offer is one of the taxanes, Taxotere or Taxol, they have slightly different side effects but have in common that neither have significant nausea nor fatigue side effects. They do cause hair loss.

There would also be some additional treatments that could be administered along with the chemo such as Avastin or Sutent. These are both ‘targeted’ drugs that use different strategies for disrupting the processes by which cancer grows at the cellular level. Avistin was recently approved by the FDA for breast cancer and Sutent is in clinical trials.

Either way, if stay with Faslodex or go to a Taxane, the expectation is that Rebecca will still be up and about and ‘doing her thing’.

Tuesday, January 13, 2009

More Updates from Rebecca

So… For those folks who are tracking this, my voice is still missing, but my energy is better. My voice has been gone for two weeks and I have this stupid squeeky mini mouse voice that makes me feel like I should bleach my hair and get a white dress....
My cough is not good, but it comes and goes. I find that when I can spend some time in a healing meditative space, my cough actually goes away. Creepy, but true.
I went to the oncologist to see about my voice and cough. He decided to move my CT scan up. Instead of having it in a month, we are going to check now to see how I am doing. The thing on my neck is shrinking. It is unlikely that the stuff in my lungs is growing while the neck is shrinking, but so far, my health is not very likely, so we are not taking any guesses.
Yesterday, I had another Medicine Buddha puja, which is a total honor. It was much less dramatic than the first one, which is good. My energy today has been very good, but it could be due to the quantity of sugar I ate. Yes folks, I fell off the wagon today and ate a doughnut (!) and cookies. Very yummy, but I do not feel I have to have them the way I did before. Good to be able to taste the fruit of the tree, but not feel addicted to it. (lets see if that lasts). After the Puja, I went to a wedding and stayed for quite a while. Cried for quite a while too. It seems that I have turned into a wedding crier. Never thought I would go there, but it is just so beautiful. Either way, the one noticeable possible result of the puja is the amount of energy I have today and my ‘get up and go’ has returned, which is nice.
I am seeing my acupuncturist once a week these days, waiting to meet the main Chinese and Tibetan docs. That will happen at the end of January when they come back from retreat. Monday, I get my third shot of Faslodex from Kaiser.
I am also still working with Connee to help being comfortable where I am when I am there, rather than trying to fight being here. It is hard, but when I get ok with it, life just gets easy.
I biked Ze’ev to school twice this week. It was great to be on my new bike. Andy and I ripped the shelves off of the dining room wall and I have been spakling, soon to be sanding (with a resperator on) and then painting that wall. The house has been calm and kind of organized, as it goes, lately. It feels good here, which is nice because I spend a lot of time here. Today, we put together the trampoline that my dad and Amy got the kids. It is really fun! Also finshed enclosing the chicken coop, so now we can get chickens. (and finish getting the roof tiles on.
I have also been hanging out with my non working friends during the day or crashing friends work places to make them eat lunch with me. I am getting out and shopping a little too, which is good. We have a new food system in our house. We are trying the English system to make life easier, except fish is on Thursdays, because garbage is on Friday and who wants fish bones around all week. I plan on having a good variety of foods, but at least I know what category is each night, like: chicken, beans, fish, pasta… It is making it so much easier for me to figure out what to cook.
I planted fava beans in a couple of beds as a winter cover crop, and lo and behold, they came up!! I am very excited about it because the kids have taught us how to eat them fresh and raw. Yum!!!
Between all of these projects, I am reading a lot and spending a lot of time on the couch. I have actually gotten a little addicted to tv again. I can turn it off, but I am finding it more relaxing than I have in years. I am no longer judging myself for wanting to watch it, which is good. I have had a jag of sadness about my health crap that I may be coming out of at this point. I have gotten the support I need through it and have had lots of good releasing cries. If I haven’t talked to you all about it, do not take it personally. I seem to not go into detail with many people. It just takes too much energy, even though I love you all so much.
Looks like my Dad, Amy and Abe are going to be visiting for a weekend at the end of January and then dad will stay for the week while Andy is out of town. (back in Dublin, Ohio where the mothership is.) That will be really nice.
That is all the news fit to print tonight, maybe more later.