Friday, March 27, 2009

Chemo update

Rebecca starts on chemo next Wednesday, April 1st.

She will get Taxol weekly for 3 weeks and then have one week off.... repeat. She will have Avastin on the 1st and 3rd weeks of the rotation.

Many people are asking how long she will be on chemo. The answer from the western medical standpoint is "as long as possible". One hears stories of people who have been on Taxol for 15 years. The only reason allopathic practitioners would stop the chemo would be because it has stopped holding the cancer in check.

We continue to research alternative allopathinc and non-allopathic alternatives that claim to remove the cancer not just hold it in check.

Thursday, March 26, 2009

us and the US

Thanks for all the pointers to the lawyers! Now I actually have to do the work!... Well actually my brother Richard has offered to take the lead on this for me so if the lawyer you recommended doesn't get called please don't be pissed at me. This is the kind of task that I'm really bad at getting in gear and doing, at the best of times.

Ellis Island... here I come.

Wednesday, March 25, 2009

The kids now know

This morning we told the kids that Rebecca has to go back on chemo. It was toughest for Merav who remembers last time, but Ze'ev is freaked out by Merav's response if nothing else. Then we went out to breakfast and went for a walk on the beach... I guess we should take them to school now. Tonight is 'circle of care', the kids support group; no coincidence that is happening today :-)

Monday, March 23, 2009

Not good news

Based on how Rebecca has been feeling and how her symptoms have been, nothing here is a great surprise, to us. First I will give the cliff notes and then, for those of you who like a challenge, I will include the radiologists report so you can get your favorite oncologist to give an opinion on the treatment plan.

Following a marked increase in the CA 15--3 (up to 188, the highest ever) Rebecca had a CT with Contrast of Thorax, Abdomen and Pelvis. The results of the CT were unambiguously bad. Some of the news includes: growth of everything that was already there, the addition of more suspicious stuff in the lungs and some liquid build-up around the right lung. The big kicker of the report is the first spot of cancer on the liver.

At this point we have to conclude that the Faslodex is not being effective and it is time to move on in the treatment plan.

Next course; Taxol. This is a 'low nausea' chemo. Taxol is a 3 week on, 1 week off treatment plan. Rebecca will lose her hair.

We hope, given the level of fatigue that Rebecca has been experiencing due to tumor load, that the change in treatment will not make her feel any worse. The HOPE is that the chemo induced fatigue will be off-set by reducion in cancer induced fatigue. This SHOULD also reverse the trend in increasing discomfort doing things like... breathing.

We have to schedule the first chemo... I'll keep you posted.


Performed after oral contrast and 120cc of Omnipaque 350.
Compared with the study of 1/13/09. A 7mm slightly irregular nodule has enlarged slightly along the left diaphragm, and a 4mm pleural based nodule along the left pleura at this same level. A patchy 8mm triangular density has appeared along the pleura on the left of image 42. An infiltrative lesion has appeared in the superior segment of the left lower lobe on image 32. A spindle shaped desity along the left major fissure has enlarged slightly.

Any or all of these are suspicious for metastatic disease.

Several small suspicious densities have also appeared in the right lung. A band of tissue extending accross the right upper lung has enlarged into a rounded frank mass measuring 6.7 * 6.0 cm in diameter. It narrows the right upper lobe bronchus. The right pulmonary artery is also moderately circumferentially narrowed by this right upper lobe mass and right hilar and subcarinal adenopathy. A small right pleural effusion has appeared. Left supraclavvicular adenopathy has increased slightly. No bony metastases are identified. A right apicardial lymph node has grown to approximately 2.8cm in diameter, from 1.9 cm previously. A spherical 1.8 cm low density lesion has appeared on the left lobe of the liver., on image 55, consistant with a metastasis. No evidence of ascites or adenopathy in the abdomen. The known pericardial effusion has increased slightly in size, and is now small to moderate in volume. No evidence of ascites or abdominal adenopathy.

Say that 3 times quickly!


Hey folks. So we have not heard from the CT scan, but wanted to let you know that I have had more energy for the last 4 days and it has been nice. I’ve been able to get out of the house, move at a human pace, and do some stuff with the family. I am forcing my self to move slower than I want to because I know if I go at even a partially normal speed, I will crash. So I am taking care. Today, so far I have had a visitor for a little, made myself juice (and washed the juicer!), paid bills, e-mailed, hung with kids, done some jigsaw puzzle (Grandma Gill left one for me to finish), and taken a shower. ALL before 12:30! So I still have some beautiful day left. My goal is to get out of the house with the kids. Maybe go to a park and maybe, just maybe, go for a little walk. I fantisize about getting some woodchips (the city has piles laying around for the taking) for the garden, but I am not going to push it. Andy is having a much needed break for a few hours today. He has been great about working and doing schlepping, even with his folks around, he was not totally off the hook for that stuff. We’ve got some movies for tonight including the BBC production of Hitchihiker’s Guide to the Galaxy. Very very silly.
I send my love to all of you and we will be sure to let you know what is up with the CT.

Wednesday, March 18, 2009

Rebecca's daily

Today’s update is that I went to the Ear Nose Throat guy and he checked my surgery site. It looks good. He also told me that it looks like I could be dealing with acid reflux. Now if the valve in my throat that goes between my two tubes is not working, that acid can go into my lungs and start digesting my lungs. He thinks that I am having weakness in that muscle. Conveniently enough the accupunturist today worked in that area and freed some stuff up. The stomach acid in the lungs is a type of pneumonia. There is no way of knowing if I have that except for giving me acid reflux drugs and seeing if it helps. I asked if it is reversible. He said ‘yes’ and ‘no’. Once it is digested, it is gone, but the lungs can regenerate a little bit. I have become ok with becoming permanently on drugs, so I am also thinking about getting a sleeping med. Acupuncturist agrees that it is a great idea. Since surgery, my anxiety goes up at night because I have been having some difficulty breathing. So I have been drugging myself and it really has been great. Wanna go to sleep? Sure. Out like a light.

Since the acupuncture appointment, I have had more energy, which is nice. I am trying to pace myself and not use it all up. I will sleep on the wedge tonight again so that I am not flat. That seemed to help with breathing. Tomorrow I go to the Tibetan doc. He usually does not say much, just prescribes herbs.

Tuesday, March 17, 2009

third in one day!

I need an Immigration Lawyer... do we know any? I need to get my US Citizenship.

At the same time -

Rebecca wrote:

So, I guess it is my turn to deliver bad news. I am sure Andy is sick of being that person. My tumor markers keep going up. Last week they got to 188. That is the highest ever. The first time round they only got up to 110. So I am skinny (everyone says I look great) and tired. The doctors are checking to see if I have an infection that can be treated with antibiotics. We should know in a few days. I am probably going to get a CT scan in the next week to reassess where the cancer is (yippie!) and then figure if I need to move on to chemo or what. So that is the bad news.

Now for the good news. Life is good. Andy’s folks have been here for over a week and are a joy to have around. They are being very helpful and doing one heck of a job on a jigsaw puzzle. The chicks are growing. They have doubled in size and none of them have died. We were told to expect some death there. Ze’ev is now a brown belt in his martial art, which is WAY cool and improving 100 fold in his new school. Merav is going to start dance lessons and is also doing really really well in school. We are now taking help from our online support service- We have signed up some of the local people, and will do long distance people soon. If you are local and have not received an e-mail from them or are long distance and urgent to help, e-mail to get signed up. They send you an e-mail and you have to register, then you can check the calendar and will be informed with new dates of requests as they come up.

A bit more news

If you've been following the drama then you know that it has been unclear if the current treatment, Faslodex, is working for Rebecca. We had 'mixed' results from the last round of tests. With Rebecca's on-going deterioration in energy, coupled with a recent increase in the tumor markers in her blood we have decided to accelerate the schedule a little. We are scheduling a CT scan for 'soon' so that we can see if it is time to change direction and start a Taxane sooner than later.

Did you know that:

The taxanes are diterpenes produced by the plants of the genus Taxus (yews). As their name suggests, they were first derived from natural sources, but some have been synthesized artificially. Taxanes include paclitaxel and docetaxel. Paclitaxel was originally derived from the Pacific yew tree.

(thanks Wikipedia!)

IF Rebecca's fatigue is due to the Faslodex, then a switch to a Taxane MAY improve things. (Bald but with energy?)

We will let you know what happens next.

lots of love,


Friday, March 13, 2009

belated info

Hi, so... we did not tell everyone what time the surgery was going to be. We have not been on top of communication and coordination, at all. I had my polyp surgery yesterday and it went very well. I was under for 1.5 hours and it was, of course, not cancerous. I found a way to see it as something that I was choosing to do that was being done for me, not something that they were doing to me. It made it a much happier experience. I slept most of yesterday and joined everyone for dinner. Gill & Michael, Andy's folks have come for support services and made a great salmon meal!
Since the surgery my energy has been up. I have not been clear about what is going on here because nothing has been clear. I have very slowly been loosing energy. Going from letting others take care of me to needing others to take care of me. We all thought, next week or in a couple of weeks I will be fine, but it just has not happened. So now we are slowly beginning to look for the long term care solutions that we used before. We are much less excited about it this time, not that we were excited before, but we were somehow more organized. We have just began organizing the local people for support and will get to long distance people later. If you are reading this and do not get an e-mail notice within a week from March 13th, let us know you want to be on the help list.
One of my challenges is that I am way to skinny at this point. Hungry, but nothing sounds good. Each time I get a fever, I lose weight and then never gain it back. I do eat at least 4 times a day. If anyone has good snack food ideas, I am all ears. no dairy or soy.
As those who have visited have seen, life still goes on and goes on well. A year from today is Merav's Bat Mitzva, very exciting. The kids have play dates, birthday parties, dances, school, homework, chicks... chicks? you say. yep. We now have 9 1.5-week old chicks in our living room. We are going to be egg central by the end of the summer. One is a boy and will get sent to the farm that we are CSA members of when he is old enough. That will be good. Between the chicks and the trampoline, we are now a kid 'place to visit'.
So we do not know if my cancer is spreading or not. I am going to get a CT scan in about a month and a half to see how it is going. I am taking the spiritual path seriously and it really makes things go easier no matter what the outcome. I send you all of my love and wish for you to focus love, not worry or fear, on us.
look forward to hearing from you.
love love