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.


Bridget Wynne said...

I am reading, and do want to know what's happening, even if it isn't always pleasant -- how could it be unless you were Buddha or dishonest?

I'm glad writing helps. We are here, listening, receiving your love, and sending ours.


Denise Wolf said...

Hi, Rebecca. I love reading your posts. Thanks so much for sharing yourself like this, so honestly.

Being ignored by people because they can't hear you sounds really hard. I can imagine wanting to throw things at them, especially if they assume something is wrong with your brain just because your voice has gotten so soft. Challenge after challenge. This sure isn't easy. And the hair - well, I can relate. It's hard to say goodbye to one of the things that makes us look normal to others. One of the things we associate with health and beauty, especially when we can't really see ahead to a time when we know it will all return.

Well, you are beautiful with or without hair. And if the chemo works as well as I'm guessing it will, you might just get a nice long chemo holiday coming up. But I do know how you feel. Saying goodbye to things, feeling your losses. It's ok to cry. Your life is full of beauty - there's plenty to cry over because you are so lucky. Not everyone has so much to lose. And the crying and sadness will wash through you and leave room for other things, like healing yourself and others. You are a healing presence for me, and for many others too I know.

Much love,

Alon Shalev said...

I want to support what Bridget wrote. If writing works for you, then use it freely. We, the readers (your family and friends), have the choice whether to skip a part or not.

For those of us who don't participate in the more intimate discussions with you, your blog is a great window for us into what you are going through. I am sure many of us appreciate this opportunity.

Physical Appearances: Some of us will look twice, stare, gasp, whatever, the first time we see you. This is only natural and I hope you wont judge any of us harshly. What is more important is the person we know and love behind the physical appearance.

Stay strong,

Barbara Perry said...

You are one ballsy lady Rebecca.It was great to see you in February and to give you a hug.Also going chocolate shopping together was pretty good too!Of course I read your blog
Love and Hugs

Bridget Wynne said...

I ran across a blog by a woman in LA who is in her 30s and is getting treated for cancer. She's very "real" in the part of her blog I read. I thought you might be interested, especially since sometimes you write about being concerned about sharing too much realness with us. The link: If you don't want to read about someone else's experiences since yours are enough to deal with, just ignore it.