Wednesday, December 24, 2008

Overdoing it

It has been 10 days now and it is xmas eve.

I have really been overdoing it by just thinking I was doing what was "normal". but I have discovered that you really need someone to help you with almost everything that is normal. Reaching in any way, like doing the dishes, or reaching up to get a plate, even wiping yourself or taking a shower, is too much. It is just causing me not to heal fast and I still have the drains in me because of that. It feels like someone is standing on my chest with "golfing shoes". . So then I have to take more meds for the pain and that makes me really feel out of it...forgetting even the simplest things.

My friend Jeanne, who I really trusted has ended up having some sort of freak out over a misunderstanding of my helping her with money (which I dont have ) has hurt me terribly. The stress has made my healing really suffer, and I just don't understand what has happened. I cannot talk with her about it until I feel that I have my strength back. She somehow thinks I am drinking and doing drugs along with my medications, which i am not, even though my doctor said I could have a glass of wine or smoke a little pot if I wanted. (great doctor)

As far as the diagnosis goes, it is really confusing because eveidently when i had my first lumpectomy at kaiser, they had taken out more than just the centinal lobe,, and had even left some staples in there. It was pretty scared up, and he really only had one lobe to have evaluated. This means that we can't be absolutly sure that it hasn't spread. He says he thinks I am fine, but we will be talking with the oncologist to see what his recommendation is. He says I should have some kind of chemo whether it is a more mild type or the tomoxofin. but because of my already compromised imune system, he doesn't think that I should have any agressive chemo just because we aren't sure if it has spread. As usual, my case is always unusual!!! I worry because I am always the "percent" even though it is small, of the one that gets it back. I should't have gotten it back in the first place in this breast.

So maybe i will go have a glass of wine and a little hit on the pipe instead of taking a pain pill, and see how that does. It is, after all, xmas eve! Linda is making spagetti sauce as a tradition in her family, and then tomorrow if it doesn't rain maybe we can take a drive up the grass valley and see the decorations.

Tuesday, December 16, 2008

"The boys are glad mama is home"

I am finally home and all my cats are happy. I am being well taken care of and still feeling pretty good. I really don't need any help except for lifting or pulling or reaching up.

Dressed for the ride home

Even after this, my tits are still uneven! I'm all hooked up to the drains for the ride home.

Day after surgery

Well, I got the nurse to take a picture! I got real good care and hardly any pain. I had a private room, and lots of good drugs. It really isn't very bad...not any pain....I just feel like i look like a guy with a beer belly now! For sure I have a reason to lose weight.

Wednesday, December 10, 2008

gettomg ready for "the big day"

I feel much more at ease after seeing my surgeon today. I know I am in good hands. He isn't that stuffy "I am the doctor" kind of guy, yet I feel he is the best because he sees me not as a patient, but as an individual. You can just tell. He walked in, held out his arms and I was able to tell him how scared I was. He didn't try to talk me out of it, but just asked what I needed to have him explain. He is going to try to do the "blue dye centinal lobe" before he just goes in and takes out all the lymph nodes. He is worried that because of the former surgerys,, there will be too much scar tissue for it to work, but we will give it a try before. My scare will go under my arm anyway because of my breast tissue going that way, anyway. He is going to try to make it all look as smooth as possible. He is also going to give me IV antibiotics while I am in the hospital to make sure that the infection i may still have won't go anywhere.

I have such good friends, and especially my friend Linda who is taking me there and will be really watching over me. I really trust her knowledge and that she will be the best advocate I could have between me and the nurses (if you know what I mean). She is so sick herself, but I realize that she does care and will go out of her way to help me. It has always been hard for me to ask for help, feeling like I am putting others out of their way for me, but Linda makes me realize that she would be hurt if I didn't ask for her help...that is a new way for me of seeing things. I am allergic to morphine,and every time I have had surgery, they try to give it to me, even though it says everywhere that I am allergic ! I also want to stay on a liquid diet as long as I can. I have fasted before, and I know it gives my body a better chance of focusing on healing instead of digesting. I would like to then stick to a mostly vegetable diet if I can. I would really love to lose weight after all this. My health needs it and my body needs it.

As far as my relationship with my daughter, after thinking about it, I think just sticking to us talking on the phone is a good idea for a long time. All I really want to know is how she is doing in her life (if she will share it with me) and how the kids are doing. It will take time for trust to come back for her, I think, and if we don't go into my life "which she has no interest in" there will be no emotional stuff from the past come up. I am learning that you can't expect some people in your life to accept you as you are, even your own relatives....probably mostly relatives. Learning to keep my mouth shut is a part of growing up! Listening to others, not even having suggestions or answers for them unless they ask, is a good way of being in the world.

Monday, December 8, 2008

surgery coming soon and its getting scary

I called the Dr today to find out how long I would be in the hospital for the surgery, thinking 24 hours was it. He said it could be 3 or 4 days! Again, a shock that it is really serious surgery...it is not just like having my breast reduction! I have been being just like my mother was with her cancer....not making a big deal out of it. But this is a big deal, and I want to express myself and not feel like I am being "over dramatic". I have always been accused of being dramatic by my mother and my children, and I have held back from myself, what it feels like to me. I don't even know how to express it, because it is so old and embedded in my persona. But what it does is make me feel alone. I don't trust that I can be myself and not be humiliated or made fun of. It is about time I express myself, don't you think? I have so afraid of what people will think. I am so like my mother, but I am not the part of her that was mean and vindictive and jealous.

I don't want to be going through this! It is not fair! It is now a time in life where I should be able to finally do what I want to do and enjoy my life for me...and what happens....I have to deal with illness, fatigue,loss of freedom, loss of my son, loss of my money, loss of my daughter, loss of my grandchildren, loss of my breasts, etc

ALERT!!! As I am writing this blog, my daughter calls me! I didn't even recognize her at first!
She wanted to tell me that she loves me(and how could I ever think she didn't)...she says at first "I don't want to get into any old stuff, I just want to tell you right now that I have decided to talk with you during this time and that she wants to figure out how to have a different kind of relationship with me". Miracles do happen! She of course was saying she isn't worried, nothing is going to happen to me, I am going to be alright (she is taking the fixing position) and she was very unemotional and matter of fact (as she always is) I just listened and told her I loved her and that it was now such a relief that the ice is broken. It is so funny, because her main thing was to make it sound like "how could i ever think for one minute that she didn't love". In other words, how could I get emotional or have all the feelings I have expressed in this blog...that it is no big deal...that is how she operates in her unemotional state that makes her feel safe. She is very afraid of emotions, and she was making sure that I didn't have any and she didn't. I don't know what she thinks "a new kind of relationship will be" but I am sure it will be on her own terms. You know, at this point in my life, I do not expect to have to kind of mother daughter relationship of my dreams, but I don't want what we had before, which was her demeaning and bullying humiliation, and my "taking it" and never commenting on it. I have had time too, to know what I will take and not take from life. I have grown up alot and been on my own, made my own place for myself without any help from her, and I don't "need her" any more. For a long time I "needed" her, and that was difficult on her too, and set us up for a very disfunctional relationship. She doesn't realize it yet, but I don't need her and therefor will not stand for the abuse any more. I will nip it in the bud, and find a way to "call her on it", before it becomes toxic.

Thursday, December 4, 2008

Me and my gorgeous brother 1995?

This is my wonderful brother who was "my first love". I have wanted to be close to him, all my life. As children, we were the best of friends. But as adults there has always been space between us. He is who he is. But intimacy is not what he is comfortable with. He and I are so different, but I always adored him. He has become more and more like my father was...distant, and uncommunicative of his real feelings. Isn't is a trip how become like our parents? He reminds me so much of my father. He is distant, but doesn't realize it. But I guess we all do what we have to to protect our feelings. I think men have it so much harder in life because they have to be "men". I accept who he is.

Me and Hisham 20 years ago..the love of my life


my daughter & I, My brother in the good times







Having this blog, and writing from my heart is quite brave of me. Giving the address to friends and having them see that part of me, inside and out, the truth is raw. I am trying to tell the truth as if no one is really reading this, like my diary when I was a kid. But I am exposing myself to all. My God, I even have pictures of my deformed breast! Even my brother can see me!






I want to live in the truth, but in the moment with friends, the truth can offend or be taken wrong. We all live in fear of revealing ourselves to even those we love. It comes for me, from not really trusting those I have in my life. I am afraid that if I tell the truth, they will get mad, or leave me. I really don't care a bit for them to know who I really am, I am just afraid of their reactions.






I talked with my brother tonight who is in Mexico. I know he loves me, and we are the only ones left of our family. I have always wanted a close relationship with him, but it just can't happen. We react to each other from a place that is old and embedded in our psyche's. But I love him and I know he loves me. But I really cannot be myself with him, and I don't trust that I can really tell him how I feel. I am so saddened by that, and there is always something deeply missing when I hang up the phone. We seem to "do our usual thing" that is comfortable and doesn't offend, but when I hang up, I wish we could really "know" each other. It is like my relationship with my daughter, where I always have to be "vigilant" of what I am saying. I can't relax and be myself. I don't blame them, it is my issue too.






The thing I have loved about my relationship with Jeanne is that no matter what is said, I can stand up for my truth and I know that she will hang in there until we get through it to the end and we become closer and closer because of it. We have gone through our fears of thinking the other might get hurt, disapprove, get mad, whatever, and we have a greater understanding of who we are in relationship to each other. This is why she and my son are so perfect for each other. My son and I have this issue in common. We can't lie, we can't fake it, we can't pretend...



He is even more honest at this than I am, so he is my teacher. But I know that he got this from me in his dna, and that makes me feel like a good Mother. That is my ego talking , because I really believe that he chose me as his mother so that he could be validated for who he was, and I could be validated for who I am. Living in this world where we are all so fearful of being in the truth with each other, I have a son who understands me, and I know that there is another person who "gets it" of how I am in the world. There are very few of us (in fact I think we are from some other planet sometimes) who just cannot "play the game" of this society. I keep looking for others who understand this way of being, but I am disappointed. Then I can be in his presence and relax and know that I am not so strange. Jeanne has this essence also. I am so glad that they have found each other because to me, my greatest happiness is knowing that my child is happy and has found partnership in this world.






This brings up the issue with my daughter. I am so worried about her. How can she live with herself stuffing down the feelings that must come up with me and what i am going through?






My mother was not nice to me...she never liked me...and she would humiliate me and put me down at every opportunity....yet, when she got cancer, I was there...in a minute..I cried when I found out about her cancer. I had her live with me while she was going through chemo. I visited her every day and took her to her doctor appointments. It's true, my children were grown, and I had the time, but there was never a moment where I didn't have compassion for what she was going through. Does my daughter really not have any compassion for her own mother? Or does she stuff it down so deep and keep herself so busy and give herself excuses, that she cannot even feel? As her mother, I worry for her. I love her, and I want her to be honest with herself. I could die in surgery...(probably won't) and then would she be hard on herself and wish she had been there to say good by? I guess she thinks she has time. I don't know what she thinks! Maybe she doesn't even think! It is so weird that I have a son who is so intuitive and kind and sensitive, and he is in prison....and my daughter is living the high life with every material thing that people think brings happiness, and yet, she is the one that I worry about! I am so sad that I don't know my daughter, and I was so sad that my mother died and she never let me in to know who she really was. I hope there is time for her to change and feel okay for loving her mother.

Wednesday, December 3, 2008

Date for surgery, reality sets in

I got the date for my surgery, December 12. It's really going to happen!

I saw the oncologist today and that brought up the reality of maybe having to have chemo after the surgery. He will know after we get the results from the pathology of my lymph nodes. I really don't want this to go "that far".

I saw a book in the waiting room of artwork by breast cancer patients called "expressions of a womans cancer journey". One of the words that stood out for me was "mutilation". For some reason I identified with it. But what came up for me was that I have felt that my body was mutilated from the time I got horrible stretch marks from pregnancy and my husband at the time told me how gross they were to him. He also told me my breasts were ugly. I can remember standing in front of the mirror a month or so after giving birth to my daughter, and he came up next to me to express these things.

Also, for all my life, I have picked at myself, literally making wounds on my body. I don't cut myself, but I think it comes from the same place. It just feels "right" when I do it. It's like "my body is already mutilated, so I am just doing what it wants......" In the last 10 years, since my life started falling apart, and i started getting old, with skin hanging, getting fatter, I saw no reason to do anything about it because it just is what it is.....ugly. No man is going to love me anyway, so keep digging at my skin, getting some kind of momentary pleasure from it. It is like an addiction. But when for a moment I may think how bad I am going to look, I consider I already look so bad, so what? It is hard to put words to what the feeling is. All I know is that it "takes me away, or takes me into myself, or something like that". It is a very shameful feeling when I pick at myself, and unfortunatly the scars can be observed by others and I don't want that to happen.

So whats the big deal of having no breasts???? Now I can really have an excuse for why no man would ever want me! The idea of dealing with a relationship is much worse than not having my breasts. So maybe it makes me feel even more safe. I don't ever want to "want" a man and face rejection ever again.

The one man that didn't reject me was my last husband. But he "used" me, and that didn't feel like love, so I was rejected by him, not in words but by the way he treated me. Being single is so much easier. It is lonely, but I have learned to live alone. I like being alone and making my own decisions about my every moment. I can choose for myself. Having my good friend Jeanne and my son is almost enough. But if only my daughter could love me, life would be pretty damn good. Each day that she doesn't get ahold of me makes me wonder how she can be so.......unfeeling

Tuesday, December 2, 2008

Still waiting for the surgery

I still don't know if I will have the surgery next week, as we are still waiting for the infection to subside.

I am on another dose of antibiotics, but my breast around my nipple where the biopsy was, opens up and still ooses. I don't know if this means it is still infected.

I don't seem to have any emotion around having the surgery. I don't really think about it much. Does that mean I am holding back my feelings? It doesn't feel like that. Maybe I am just getting used to tragedy in my life, and it isn't a big deal any more. Life has become a series of challenges, and it is just another challenge. what can I do? Nothing. It is what it is. I sometimes look at my breasts and wonder what it will look like without them there, and then wonder if I will freak out!

My daughter still hasn't gotten ahold of me, and I suspect if she hasn't wanted to by now, why would she in the future? My son will probably be in prison the rest of his life, and we are helpless to do anything about that. the only thing i have control over is what I am doing right now. Have I really grown to a place of wisdom where acceptance of what is, is really what is happening....I am no some sage or old wise woman, but you know, maybe I am. Maybe all of these struggles have finally gotten me to this place? I have had years of wanting to end it all, and couldn't do it because it wasn't the answer. I have had husbands and relationships and realized they don't work for me, and I don't agonize over wanting a lover in my life.

Right now, I am excited that I have rented a small space where i can have my art studio and have a little shop where I can sell my many artistic projects of jewelry, silk painted clothing and fabric, paintings, antiques, whatever. I am going to call it Joslins Gallery & Collectables. I don't have to make money, just enough to pay the rent. It is something I have always wanted and a way to get rid of all the stuff I have collected for years. (Good fung Shui). I will meet people and be able to do things on my own time. I will even have my easy chair there to take my rests.

So, again, am I just in denial? Or have I come to a place in my life of acceptance of what is? I know if I lost one of my children, it would be painful, but I have lost my son in a way that is slow and agonizing, watching him suffer. I have had to learn to accept his suffering too. That is the hardest lesson. To allow your child to suffer, accept you have no power to change his suffering, and still live in this world and find some happiness.

And to be able to forgive my daughter for what she is doing. To accept what she needs to do for her own life and happiness. To not judge her for not having compassion in her heart for me. To accept that the dream I had of having my daughter love me and accept me for who I am. I had to accept my mother not loving me in the way I wanted to be loved, unconditionally. I don't know if I have done that, but having it happen all over again with my own daughter has been hard.

I am truly alone, even though a have my son who loves me, but can't be with me physically, and I have a good friend, his girlfriend who takes care of me when I need her. All the fantasys we have about life being sweet and kind and loving were just that, "fantasys". I used to think that "one day it would happen", but it hasn't happened yet. But I do manage to find some sweetness and love, here and there (especially in a pint of ice cream).

Enough for today.