Thursday, April 23, 2009

Napa and beyond

Andy and I had a great weekend away. I was a bit nervous because I did not know how I would feel and what it would be like being away for so long. We were welcomed into a fabulous community. We stayed at a friend’s house that is set up like a b&b. It’s a beautiful victorian and we were quite spoiled by their amazing food. The teaching and seeing Rimpoche were great. We both came away with sore backs hanging on the floor for two days, but it was worth it.

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

Hangin' in there (mom titled it for me, god bless her)

So I am sitting here in chemo. It is my first time by myself. It has been a busy morning. I have already gone to Kaiser once. Andy and I were both up by 5:30, talking about the day and working out details. There were a lot of details today. I am glad that I was able to simplify his day as he is stressed about bouncing all over the place.
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

Post passover

The latest medical news comes from a dear doctor friend who has just recently joined Kaiser. Andy asked her to review my records and give us some insight into what is going on. SO. Boy did she help. Turns out that the ENT lied to us. I am really dealing with some anger around this. He said that I did not have vocal cord paralysis, when he put in my report that I do. One of the vocal cord nerves, for some reason, goes from the brain to the chest and back up to the vocal cord. Turns out my cancer is leaning on it. That is what the oncologist thought in the first place. I had a polyp too that did need removing, so that was done well. It has just been strange that I haven’t gotten my voice back. My throat also hurts, not at the top, but half way down my neck. The doctor said a while ago that is because I am straining muscles in my neck to talk. Those muscles need to rest. Ugh. I am not always patient and persevering in this. I get fed up too.

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

I wish my titles were as catchy as Andy's

Passover was a great success, even if I couldn’t lead or talk. Andy did a great job. We had Andy’s family (His folks, sisters Deborah & Julia and some of their kids Kayla, Kezia & Jake), My family (my mom & Deana, my cousin, Bruce & one kid Sophia.) , Friends (really family too), Jack, Justine, Rhonda, Molly, Casey, Rebecca G. (and kid). Plus us Dales west. That’s 22. We hired someone to work the kitchen, so we did not have to do any dishes. There was still a day’s worth of work for all of the visiting family before and ½ day after. I only carved the turkey, which I love to do after watching my dad do it when I was growing up. We laughed and it was lots of fun.

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.

Love love

Tuesday, April 07, 2009

here goes nothing. -from Rebecca

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

Rebecca has something to say.

Hi y’all. So this is my new mode of talking for a while. For some reason, the other day, before chemo, my voice started to go again. This time it hurts a bit, so it is easy to remember not to talk. After surgery it did not hurt really. I think it is from the coughing, but I am not sure, so I am not talking at all. Bummer, but true. So if you want to contact me, do so via e-mail right now, since I cant use the phone.
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

Nancy Says this could be called 'Day 1'

Hi everybody.
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)

Love love