Wednesday, December 23, 2009
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.
Thursday, December 03, 2009
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.
Thursday, November 12, 2009
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!!!
Tuesday, October 13, 2009
Friday, October 02, 2009
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
Thursday, September 17, 2009
Wednesday, September 16, 2009
Saturday, September 12, 2009
As you all know Rebecca's has been feeling pretty good for the last few months. She had a bad 6 months at the end of last year and the beginning of this but after she started on chemo she got massive relief from her symptoms and got a lot of her energy back. She went in for a CT scan this week. As we expected the tumor in the lungs has significantly receded, hence the relief in symptoms. What comes as a complete surprise is that meanwhile the cancer in her liver has progressed significantly. Apparently one only needs about 20% of one’s liver to function and Rebecca’s is only compromised by 10%-15% so she’s in no immediate danger from liver related side-effects. The progression is considerable though; going from one visible lesion to (we counted) 20. When the liver is effected with one large mass it is possible to apply a local treatment directly on the tumor. With the tumor spread out as it is the only treatment option is systemic. (Even the doc made a fried liver joke at this point).
The doc has made it very clear that we should stop the current treatment and go on to another that will address the progression in the liver. He has given us a choice of 3 different chemo options to chose from; strawberry, vanilla or chocolate… oh no that was at the store after. I can’t remember right now what the choices are but as I research them and commit all the pros and cons to memory I will share them with you here. Doctor made it very clear that even if there is no net increase in tumor mass this is a concerning result. The cancer in the liver is now the ‘primary concern’ so all those good healing thoughts that we have all been beaming at Rebecca’s lungs so effectively; now need to be directed at her Liver.
We are both a little freaked out but are trying to remember to just stay on the moment and enjoy the time we have right now.
We will keep you posted.
LOTS OF LOVE
Tuesday, August 18, 2009
I have been remiss about writing. Not much to say…
I am starting another chemo vacation tomorrow (my birthday. 41!) that is going on for 3 weeks. J During the time that I was on the last one, my tumor marker went from 55 to 63. The doctor was not concerned about it. He wants me to take this next vacation and enjoy the summer with the family. I have had 2 weeks of chemo between vacations. I am going to get my markers checked before the vacation, so I know what happens during it compared to during chemo.
I have up days and down days. I am always surprised that I get wiped out. Maybe it is my spaciness that makes me forget, maybe I am optimistic. I wish I could control them so I could chose which days to lay around and which I can do my projects, but I cant. The up days come at unknown times. The doc has changed my benedryl to something that does not have as many side effects, so after chemo last week I was full of vim and vigor. Now I am wiped even though it has been almost a week since the last chemo. Maybe coming off of the steroids. Maybe the chemo stays in my body longer than one would think. I don’t know.
There is a bunny in the neighborhood. We caught it once and gave it back to the little girl who got it from an aunt, but she did not keep it for more than a week. We are trying to catch it again so we can give it/find it a home. We don’t know if we will keep it, but who knows…. It is a baby, white and black. Very very cute.
The kids just went on their last week away for the summer. Camp Kesem is for kids who have a cancerous parent. That’s me. I hope they are having fun. I thought I would be glad to have more down time, but it is the first morning and I miss them terribly. Ya never know how something is going to make you feel till it gets here.
The chickens are all laying. The one that we were told was a boy, isn’t. So we have 9 laying hens and about 7-8 eggs a day. They are little, but very yummy. Some of the hens lay in the boxes they are supposed to, but most lay in one spot under the blackberries. Oy! They are very friendly. We have started watering the lawn so the chickens have greens to eat. The garden is good. We are trying to get the next round of patches planted with winter squash, spinach and turnips. Maybe we will plant favas again somewhere. That went well. The tomatoes are just coming in. The cukes are just finishing. Beans are slow producers…etc…
We seem to be all about the food and the yard and the projects in the yard these days. It is fun.
Wednesday, August 05, 2009
It has been a while again. It is early Wednesday morning. I am about to go back to chemo today. I had a chemo vacation of two weeks. That is I did a round of 3 weeks, had my usual week off, and then had another 2 weeks off. It has been a good learning experience. There is subtlety to what the chemo does to me. I have clearly had more energy, which is really nice, but also a general feeling human, sleeping better and better gut mean that life has just been easier. I am ok going back to chemo today because I know that it is part of the medicine that makes me feel better. I remember back to before I started it and I was in pretty bad shape. I am not in bad shape anymore, relatively speaking.
This all leads to people saying, ‘so are you getting better?’ That is a complicated question. I am not getting worse, but I am not ‘all better.’ Connee described it for me well. I am in a no mans land. The whole family is. Life is kinda normal, but not really the way we would have it if we could. The proverbial shoe could drop any time from now for a couple of years, according to the medical establishment. That would mean that I would have to change chemos to one that makes me feel worse. But I am doing a lot of other stuff and last time I had 5 years between flare-ups, so… I am holding out for longer. It is still strange though because we are really living with the cancer again with it affecting us more than it used to. So there is an underlying tension, but on top of that we are living our lives, talking about it and having fun where it is available (which is more than one would think!) so that life is not about cancer (‘cause that is a drag).
I am very grateful for people who are helping us. I do not know if that is clear to you all or not, but I am. I also feel like some people may start to think that we are getting back to ‘normal’. Well normal has just changed so there is no returning to what was normal for us when I was not sick. That is the confusing part. We may look more normal, but the help is still appreciated. Being the good Jew that I am, there is guilt associated with receiving help when I do not look like I need it. So I keep looking to the practice that tells me that I can give others opportunities to do good deeds by letting them help me. So by you helping me, I am helping you to do good (which is good for everyone).. We currently get 2 meals a week and the usual last minute calls from me to people to pick kids up or drop them off somewhere. This summer has been nuts with logistics. That is another way that the chemo is affecting me. I am just not able to think as clearly and hold any balls in the air when it comes to family scheduling. It is frustrating to make so many mistakes that affect so many people. That is the next step for me. To figure out how to be more coordinated. At this point I do not make any plans without my ‘book’ in front of me, so thank you for all of your patience.
We took a real vacation too: I have to run but to keep it short, we went to Santa Barbara with Andy’s siblings that live in the states and their families. It was mellow, beautiful and relaxing. I did not realize what a break it was until I came back and tried to start thinking about everything that needs to be done around here. It was a real break. Andy and I had a date too to celebrate our 15th wedding anniversary J. We took a recumbent bicycle for two and went on a 4 mile round trip. He did a bunch of the hard work, but I was able to keep up pretty well. That is an example of what I can do these days. Lets see how the chemo vacation affected my tumor marker. We should know in a couple of days. We are planning for me to have one round of chemo, then another two-week vacation for the end of the summer. We might not go away, but it would be nice to be around the house and not feeling ucky…
Monday, July 20, 2009
Meanwhile, we have been having lots of fun!
With the help of Rebecca's aunt Jan we have created a beautiful front garden where there was a scrub patch for the last 15 years. Our veggie garden is putting out huge quantities of awesome tasting food. The chickens are just fun to have around and now we got our first egg. Yesterday Rebecca extracted enough honey from our bee hive to last us a year and I spent the day building a bicycle driven spit that will be used next weekend to cook a whole pig at a friend’s party (pictures to follow). (The theme of the party is “Ride the 21 speed pig”). Rebecca and I are having lots of fun doing this stuff together!
If only I could let go of the nagging worry in the back of my mind; life would be pretty much perfect.
Wednesday, July 01, 2009
Love love and talk to you soon….
Sunday, June 21, 2009
Doctor news: I went to the ENT today to get an understanding of my voice. He explained that my polyp healed fine, that was on the left side. On the right side, my vocal cord is weak. This is not the side that the nerve goes down into the chest and is parallel with the pulmonary artery. That means that the nerve from the vocal cord was damaged another way. I have mucositis from the chemo, so that can be a partial contributor to it. I also had radiation on that side, so that could also contribute to the weak vocal cord. (Oncologist says that it is a good possibility). I am learning a lot about my voice just over the last couple of days. I understand now how to relax my voice so that I get my ‘Thelma’ voice (Marge Simpson’s sister on the Simpsons). I think this is my natural voice and the higher voice is a strained voice. I am going to practice being Thelma and I think over time with some other relaxation techniques, I will get more voice, slowly.
So from all of this, it is good news that the cancer is not directly effecting my voice because anything that the cancer directly effects, is not good. I am glad I went back and got more answers, even if it meant that nasty scope….
My energy has fluctuated a bunch. I just finished a big upswing, today I am tired, but not grumpy. My diet has gone out the window and is a moving target, so don’t even try to please me. The things that I am strict about are milk, red meat, and fresh fruit. I am working on my mucus membranes so I can get that fruit back in. My gut is much much better than it was even a week ago. (whew) The gut is a big deal in this because it is how my body can stay strong.
We have been having house guest fun. Jan, my Aunt, just left yesterday after doing her garden magic to our front yard. This afternoon Andy and I planted 60 someodd plants that Jan helped us pick out and then placed yesterday before she left.
Today is also a big day because Ze’ev just went to overnight camp for the first time. He is gone for 2 weeks with a friend. I miss him already.
Love lot you all
Thursday, May 28, 2009
Tuesday, May 26, 2009
It seems to be true that I write mostly during crisis. So no news really is good news...
I am doing pretty well. I am at the end of my second round (month) of chemo. It has been two weeks since I have gone in. I go in again tomorrow for the beginning of the 3rd round. I am doing better than when I started chemo, but I have begun to be chemo tired. It is a drag, and very unpredictable still, but I am letting go of the hope that I am going to continue getting more and more energy. I go get my bloods done today, so I will know what my tumor marker is tomorrow. I will let you all know. We look forward to chemo holidays. Hoping to time them with summer breaks.
We have had constant visitors, which has been nice. Two weekends ago, it was Andy’s brother, then John, a work person with Andy, came and was gone most of the time working. They day John left my cousin David, on my dad’s side, came. It was great to see him and we had fun, just not moving at the pace I wanted to move. I can do some of what I want, but then have to rest. I have managed to get sucked into a Richard Russo book. That is the most complex thing I have read in a while. I am enjoying ‘Bridge of Shadows.’ I take book requests, as I am going to have to get to the library soon.
The garden is an ongoing project. It is doing so well that the next projects are not staring us in the face. We can get creative now. I am looking at companion planting for the things we have in the ground and we are thinking about what the next round of planting is going to be. Already, I am buying less veg. because we have to eat the favas and the artichokes. The lettuce is now ready too…☺
This week is busy. I am starting to offer energy work to others. This is part of my healing and using the ‘energy’ in the universe. It is fascinating how energy work for others is also good for me. This is free, so if you are near by and would like to get worked on, I am starting slowly but would like to talk to you. I am very excited by this.
Love to you all and I hope all of you are having fun doing your thing.
Tuesday, May 12, 2009
I went for a mile long walk around a lake up in the hills today. I am now pooped, surpringly so (at least for me). It was very slow and leisurly. Tomorrow I have chemo again, so I am at the top of my game right now.
It is beautiful here and Richard, Andy’s brother just arrived, so I am going to go hang.
Love to you all and thank you for your loving support.
Friday, May 01, 2009
Good news. My tumor marker dropped from 186 to 161. That is one month’s progress. It is not surprising as I have had more energy. It is in the right direction, but not huge. Normal is below 39. It is not miraculous, but a good steady drop. The first time I went to South Africa, the tumor marker was at 110 when I left and 56 when I got back. That is huge. This time I have to be patient.
My voice is doing much better. It goes away sometimes, but mostly I can talk. Phone talk is hard because people do not understand me, the same way it is hard to understand kids on the phone. My voice is pretty high, or breathy.
I am constantly working on staying grounded in relation to whatever drugs are going through me. The steroids going up, and down, the benedryl and the chemo. I am working on holding steady in my body and trying not to over think too much.
Merav has been out of town all week and we miss her a whole big bunch. She comes back today. CANT WAIT! I thought I would be glad when the kids went away to summer camp, but now I am rethinking that. This summer they each go away for two weeks. They are going to different camps and they overlap being gone for 1 week.
Nothing very exciting going on here, I guess that is good for a change. I think of you all and wish you well. How are your lives?
Thursday, April 23, 2009
Friday night we ate a fancy meal at Celedon. I spoiled myself and went for 3 appitizers, salad, crab cakes and muscles. ☺ Saturday I met with Rimpoche during lunch and then after dinner a very talented energyworker worked on my head, nervous system and throat. Since then, my voice has been back much more. It really effected the way my entire neck/5th chakra feels. Its great. I hope to get back to her sometime. Sunday, was a very good ending to the teaching that I started getting over a year ago. It is the first time I have had a complete teaching and I look forward to using it, the best I can.
At some point on Sunday, Andy mentioned the kids and I was surprised and somewhat relieved that I let go of them for at least 24 hours. It was nice to know that I really trusted the situation that they were in and their ability to cope in it. They did of course totally fall apart when they got home. But that is cool. They had lots of fun and were pretty tired.
This week I have had Anne Aspen (nee: Boynton- I think I did that right) come to town. We have worked out that we have not seen each other since 1995! It has been fabulous showing her Berkeley (yes we went out of the house). I have had a bunch of energy lately and so I have been getting out and about. We took a driving tour, climbed Indian Rock to look at the view, and walked a little of Lake Anza. It has been beautiful weather. Today we are back to cold and grey. It has been special that even though our lives have taken different paths, we have grown in similar directions and noticed the same magic in life. That is pretty cool.
Anne gave me the gift of talking about a couple of beautiful deaths of loved ones she experienced. I have never experienced a death. It is like birth and house buying for me. The first baby I held was my own. We were the first of our friends to buy a house and did not know what we were doing. (we did not make any major mistakes, but it still was like shooting in the dark). How did I get this far in life without being with someone when they were being born or dying? I am 40. Somehow I have lived a life away from its messy changes. Maybe by the time I am that sick I will have experienced someone else’s death, but probably not. So it was great to hear some beautiful experiences around it. It reminds me that I really am going to do fine. That is a big relief. I guess the pressure I put on myself to ‘do stuff’ did not go away, it just transferred to the one thing I am guaranteed to do other than pay taxes. Now that I recognize that, I will work to take that pressure off and just trust myself.
Thursday, April 16, 2009
So I am in the last chair in chemo and it is a ‘semi-private room’. There is no curtain on my side, so the other person has privacy and I feel like I am in a storage room with extra machinery and an extra bed thing…forgot the word AND there is no door, so its like being in the hallway too. I am glad that I have the computer to vent on and the noise canceling headsets. I am not usually bothered by this kind of thing, in fact I am sure if andy was here, we would have a laugh about it. It really does not matter. I have a comfortable chair, I am getting my medicine, and the rest doesn’t matter. In fact the extra bed makes it so I have a kind of desk surface. (an hour later they offered to move me to a private room, but I was set up already) I brought everything in the world with me, (computer, ipod, extra cds to listen to, my book, my practice folder, more food than I could eat in a day if I tried…I shoulda been a boyscout.) just in case I get bored or lonely. (which is so unlikely because last two times I slept 95-80% of the time). I usually do not get stage fright, then get upset when I am there. This time, I am letting myself be nervous before, and I think it will be straight forward.
I have had to ask for another nurse because at Kaiser it is not a requirement to use a mask when accessing a port. My nurse has glasses and if she wears a mask, they fog up and she cannot see. At the clinic in Sebastapol, I have heard nightmares of people who have gotten infections in their port. The nurse was very nice about having someone else do it. She even said ‘hey, you are the boss.’ That made me feel better. I gotta say, my port rocks. Even this morning when I got my bloods done, it burst a vein in my hand. If they had to try to get my vein for chemo, life would be hell. They are always surprised that I don’t want the cold stuff that numbs the skin before the needle. One needle directly in is nothing compared to the pin cushion I have been.
Who is going to read this? I don’t know. It does not seem like something that I would want to inflict on anyone. I know that I cannot protect people from pain, but I can at least be considerate and not share it with people who would be upset. Right?
It just feels good to write. (I wrote that, but then decided that if my mom could take it and she says other people want to know, then I would post it. If it is not interesting enough, sorry...;-))
I have been going up and down the last few days. I have had bouts of crying and then remembered the love in the universe. I am trying to work at holding on to that love. That is the key. When I remember that what I want to be is a healer and that I can still help with my intention, my mind, my most powerful tool… then I remember what to do. I am reading this book ‘Gates to Buddhist Practice’ and I just love finding similarities between religions. It is all the same when you get down to it. According to this book, one of the ways to purify oneself is to do 4 steps: 1. Invoke a being (god) that you have faith in. 2. Find regret in your heart for ills that you have done 3. Commit to not doing it again & 4. Receive and feel purification/blessing. Sound familiar? Yom Kippur? Confessionals? I am sure there are more religions that do this too, but I did not study comparative religion. It just all comes down to the same things: believe, forgive, walk true and allow in the light. That is all something I can do at any time. So when I am there, it is easier to not feel sorry for myself. I still have things I can do to make a difference in the world and that is all I want to do.
It is 11:00. I have been here for an hour, been writing a good amount and now I am getting the benedryl and getting sleepy…. random owie belly. Do I go to the bathroom now? Or ride it out? Better go, get some kleenex on the way back.
I am glad that I waited to write till I had something to say.
Oo typig on benedryl is hard. I also want to say that the nurse saw that I was writing and ws beig considerate and di d not to my benedryl first, so I could continue working. Very thoughtful. I did manage to complaine before she told me why. I do complane a bunch. I a afraid that I passed that on to the kids.. not ideal (Spelling errors due to benedryl)
Once I woke up, I had a harder time. The nurses did not come when I called. I saw that my nurse was busy and the other ones did not want to help me, I think because I was not their charge. I also felt really invisible because I cannot talk to ask for help. The nurses did not want to get so close that they could hear me. That was hard. People think something is wrong with my mental capacity because I cannot speak loudly. The nurses know me and do not think something is wrong with me, but they still get frustrated. It is strange in shops and stuff, they speak slowly. I was aware that I was feeling selfish at chemo and did my practice as well as recognized that the nurses were helping other people who needed help. I am not more important than them, even without the awareness of my spiritual practice.
Chemo is not seeming to wipe me out like before. I am a bit woozy, but pretty capable of sitting around and doing bits and pieces. FYI The doc says that he cannot reduce the IV steroid or benedryl. It does not work like that. The allergic reaction can kick in at any time and then it would be BAD…so steroids and benedryl once a week it is.
After we brought the kids home from school, we all went into the backyard and Andy shaved my head. Merav has fun memories from the first time we did it, but it did not go that smoothly today. She wanted it done a certain way and that is not what Andy did. The kids fought over the trampoline… it ended with merav inside upset, ze’ev got a little bounce and then got sent to homework. It was quiet in the garden. Everyone was very emotional about the haircut, so I can understand how it was not all easy. I don’t know when my hair is going to start falling out so we did not shave shiny head, as I remember that it hurt, razor burn and all. Instead I got a dream come true since highschool. I always wanted zig zags on the back of my head. So now I have a couple of thin lines that outline a Charlie Brown style stripe on the back of my head. ☺ We have pictures, but I am still notoriously bad about getting them to people.
It was much more emotional for me about losing my hair this time because I do not think I am ever going to get it back, being on chemo for life and everything… So it is an end of an era for me. Another change, another letting go. I am doing better about it now.. I am just heading towards the Buddhist nun look sooner than I would have expected. Maybe I will get kudos this weekend from the Buddhist community.
This weekend we are going to Napa for the 3rd teaching on Taming the Mind done by the teacher who I have taken on as my teacher. Andy is coming too. We are staying in a B&B that is run by friends and does not take paying customers. They are sooo sweet and I look forward to seeing them as well as other friends up there. My cousin Deana is organizing the weekend for everyone, so her house is going to be too busy. I think Andy and I are going to have a couple of nice date nights.
Saturday, April 11, 2009
The other medical news explains my energy level going up. The cancer is leaning on the pulmonary artery that takes blood to my lungs. With that pressure, the lungs cannot get proper oxygen to my body and I get very tired. Since chemo, I have had more normal energy. That hints that the chemo is working and that the cancer is not leaning on the pulmonary artery so hard, so I can bounce off of the walls a bit, as Tiggers do.
Speaking of emotions. It is really easy to tell everyone how calm I am being through all of this. It is hard to admit being so scared. Especially because everyone thinks I am so brave. How do the brave get to show their fear without disappointing or scaring everyone. (If she is brave and scared and I am not brave, it must be really scary…people think) So I am going to tell you. I am scared right now. I am scared of losing bits and not getting them back. I am scared of the physical pain that this sickness is going to cause. I do not want to die on morphine, totally out of it, but I don’t like pain.
Thursday, April 09, 2009
This week’s chemo is different from last. I just walked back in the door 5 minutes ago. Instead of crashing, I am eating matzo ball soup leftovers from last night. Yum… And typing this. It was a short chemo week. It took from 10:30-1:00. Long is another hour. The weekly patern is long, short, long, none. Is that morse code for SOS? While I was getting my chemo and still lucid (they give me benedryl first right now and it knocks me out) I was picturing the chemo as white light entering me and healing me. Filling me with white light instead of black, which is what the cancer feels like. I am working on loving the chemo for its healing properties and not being resentful of it. Oh, and here is some good news, I gained 2lbs. Nothing I have ever said before, but I was getting too skinny. Gaining weight is good considering how much I am eating, if I wasn’t, I would be really feeding the cancer.
So what does it mean that I am dying? What is dying? While talking to Deborah, my sister in law, in the car home from chemo. She said that she sees in my life the factor of ‘having to let go’- from practical things, like getting to shop, to personal things like my hair. Dying is about letting go so that when the time comes to die, I am not holding on to anything that will make the process suffering. Since there is an infinte amount of things to let go of, some big, some small, even though I have started down this road with a sure footing, I still have a long road ahead of me. I am so fortunate to have so much support around me. No person is an island and definitely not me. Ironically, the thing that I hold on to most is my people. I am not going to let you go, but I am working on not fixing it for everyone. That is hardest for my kids. Today, I did not succeed in that practice. I tried to fix it and couldn’t. The beauty is that it got fixed without me. Go figure…
Thank you all for your comments you are all so important on my road.
Tuesday, April 07, 2009
So I am a week into chemo. I am doing better, i.e. I have more energy and doing more. The house is filled with family. I generally do not have a voice. Sometimes it comes and I use it, sometimes it goes. My voice problem seems to be coupled with a reduction of esophageal motility. That means my esophagus does not work. It is like someone took an axe and hacked at my neck. My head is still attached (despite what my parents said), but my vocal cords in my windpipe and my esophagus don’t work very well. It has been hard literally having my voice taken away from me. This blog is something I am doing to cope with it. Luckily, I can type. I hope you will not regret that.
This is a bit scary to talk about, but I am trying to take the elephant out of the room. I am dying. Very slowly, bit by bit, but it is happening. It is going to be a while till I am dead, but its gonna happen most likely before I am 50. We do not know if it is going to be 6 months, 4 years or what. My healthcare (chemo included) is aimed at prolonging my life, not making the cancer go away. It is just as hard to watch you all worry about me as it is for you to worry. I know this is strange sounding. But it is ok that I die.
Don’t get me wrong, I am not on my death bed. It is still going to be a very long haul. Another one of the reasons I am telling all of you this is because for those of you who are being a physical help to my family and want to continue to, pace yourselves. I may still be dying for years. No one knows. I am starting to understand the depth of the not knowing. Sometimes I think it would be easier to know, even if it meant dying sooner. It is the not knowing that can be so hard, from the diagnosis time to the learning to live without waiting.
This process has really gotten me thinking about purpose on earth and all. I have found a great deal of comfort in the Buddhist teachings. I am going to try to start talking to everyone about this to open some doors for communication and to share this amazing journey I am on. I am not talking to my kids in these terms though, and I would appreciate it if you did not either. They are on the journey with me and we are all working it out, day by day. That is enough for them.
Buddhism talks about impermanence. That nothing is permanent. I am very aware of that right now as I am slowly losing functioning of bits of my body. I don’t know when or if I will get my voice back. My esophagus thing is simply annoying, not life threatening. Who knows, maybe it will go away, or maybe it will be another thing that just stops working. I am breathing better than I was a couple of weeks ago… With all of this impermanence, I am learning to appreciate what I do have. I have so much it is crazy. I remember feeling like that when I was first off of radiation 8 years ago. I got to go to work. It was so exciting. Everything in life was grand. I think that lasted almost a year. I am slowly getting it back in reverse. As I lose things, I see how much I have.
I have never been afraid of death. Being dead is easy. It is getting there that is the hard work. I am watching people be afraid for me, sad for me… I am not the one who is going to be sad when it is over. I’ll be dead, much easier. I want to give as much as I can before I die and help everyone I can before I die. That is also how I got to the whole spiritual path thing. I have done the ‘running around in circles caring for people’ thing and that is great, but never ends. The list never shrinks and people are still needy of things. The more you give the more they need (not that I mind, it just does not seem to help). I can no longer do that and I do not believe that the actual acts of giving were the things that helped them. It was the love behind the acts that helped, deep down. So now I am just skipping the acts and going straight for the love. I am learning how to love everyone, slowly but surely. Why not love every little thing? It can only make more happiness. I am testing this theory. So far so good. I am happy when I am loving. The ones I am loving are also happy when they are getting my love. I am learning not to meddle, not to nag, not to force the ones I love into doing what I think is right. I am learning to love them right where they are. It has been hard for me to let go and let that happen. Instead, I have pissed people off who I have tried to ‘help.’ Some of you may not know this about me, especially looking at my house, but I am a control freak.
I have a bad cough. There is a 40% chance that the chemo will shrink my cancer 50%. We do not know how long that is going to take or how long that will last. My original (8 years ago) odds were 30% that I would be alive in 5 years. So who knows. It is all statistics that keep on changing.
So that is the scoop. And I really am open to talking to everyone about this stuff. So let the floodgates open. Love to you all.
Friday, April 03, 2009
The chemo, however, is going ok. I spent two days bouncing off of the walls because of the steroids (even went bowling with the family), now I am coming down and trying to not crash. Using the meditation practice for that. The steroids also helped my breathing. The big dose of benedryl helped my coughing, so I have had a break from symptoms thanx to drugs. So that was kinda’ cool.
Now I realize that I might be allergic to chickens, but that is not a big deal because they will be going outside soon. It is not a severe allergy, just a bit annoying, so I will still be able to hang with them sometimes, just not have them in my living room. Right now they have moved to the laundry room.
We now have netflix on demand so I am taking advice about what good movies to watch.
Wish you all well and thankyou for all of your help, love and support.
Wednesday, April 01, 2009
Just got back from a day at the doctor’s’ offices. The chemo appointment was at 8:30. There is practically no turn over in the department, so I had a nurse that I liked from last time, 8 years ago. That was really nice. Everything went very smoothly. They gave me some pre-drugs because some people respond negatively to the solution that the Taxol is given in. I got Pepcid, which cant hurt my esophagus problems. I got a steroid, blocking histamines, and benedryl preventing histamines. So being the light weight that I am, I slept the entire time. The chairs lay all the way back into a bed, and with three pillows that leads to good sleep and no back pain. I have a port, so I was not a pin cushion (that was great). I used a theory that the cancer likes sugar and when the chemo goes in with juice, the cancer wants the sugar from the juice so grabs both the chemo and the juice at the same time. So we shall see. I woke u at 12:55 and had an acupuncture apt at 1:15. Andy sat in on the pulse taking and talking part. I am glad he got to meet doctor Bob. He really is good. While having needles in me, I did forget where I was and what was going on. I think I went pretty doggone deep because next thing I knew, I figured it was time to as for the needles to come out. It was 3:45. I have been having trouble eating lately. Got home from Dr. Bob’s and raided the fridge. ☺ I feel happily full now.
The other doctor appointment I had this week was with the swallowing specialist. It turns out that part of my reflux problem is that not only is the acid coming up, the food is not going down. It is sitting in my asophagus. My asophageal muscles are not working well. Oh joy and rapture. I am supposed to eat small bites and alternate with drinking. (easy when I feel yucky, hard when I go into lawn mower mode like I just did…) It is good to know what it is. Modern medicine does not know what causes it or how to fix it. I have an acupuncture point that I am supposed to do myself that should help a bit with the reflux and the swallowing. I am also supposed to swallow my spit a lot so that the stuck stuff will go down.
Tonight, there is a potluck at Ze’ev’s school. Even though I slept through chemo and accupunture, and I am sitting in the sun outside while Andy is being tough and changing the chicken’s cage (it is a gorgeous day), I am going to stay home for the pot luck. Playing it safe. It’s a new thing for me. Dispite how shocking today could have been, I have actually had a nice relaxing day. I have enjoyed the people around me and slept a hell of a lot, which is always good cause my sleep is not ideal these days.
Wow I just moved. Ya know how everything is fine, till you move, well there I am. Whew. We just got net flix and that is where I am hanging out tonight. I am very tired now. I feel good though otherwise. ☺ I think Andy’s story is very different from mine so I want to let you know that his day was not as good as mine, as he did not sleep as much as me and watched his wife do chemo. Everyone is feeling this whole thing differently. I want to thank you for all of your love and prayers for me and mine. For those of you worrying about our lives as people and family, it is ok. Most of our lives are very normal and we deal with issues of homework, summer camp plans, getting chores done, playing family games, eating as a family, andy’s work. I am just not as involved in everything as I used to be. That also means that I do not get to control how things go. This is a challenge for me and hard to let go of, but I am getting better at it. Andy is glad that I am getting better at it. ☺
So I send you all of my love and know that life is different from what it was, but it is still normal. We still have lots of life in this family as well as stinky chicks. (they will be a month old in 2 days)
Friday, March 27, 2009
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
Ellis Island... here I come.
Wednesday, March 25, 2009
Monday, March 23, 2009
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.
THE DRY FACTS:
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!
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
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
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- www.lotsahelpinghands.com. 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 firstname.lastname@example.org 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.
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.
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
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.
Wednesday, February 04, 2009
I have a date for my 'procedure' to have the polyp removed. March 12th. It is a while to wait with this silly voice, but it is a non-urgent issue. That is always good. Looks like we get Gill & Michael for this chunk of time (Andy's folks!). We are being spoiled by visitors.
Amy and Abe were here this weekend with Dad, who stayed on for the week while Andy is out of town. We had a great weekend with Amy cooking (She is AMAZING). All had a good time. Now I am having a quiet week with dad helping me out. My energy is still fluctuating. The steroids (for the poison oak) first gave me a ton of energy two weeks ago and now they have sent me into a tail spin of tired as I weened off of them. I have been off for a couple of days, so the energy is balancing nicely. At least I am sleeping now.
Now I am struggling with a big long list of things to get done (taxes and stuff for kids schools...) Blech!! I am taking it very easy though. I thought you folks would want to know that.
love to you all. Thank you so much for all of your help and love.
Thursday, January 22, 2009
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
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
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.
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
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.