More Surgery

I bought beautiful earrings yesterday. They are so beautiful. I use to make silver jewelry. I have a real fondness for beautiful things. I bought these after my Dr.s appointment.

I saw the surgeon yesterday. I wasn't nervous at all. Not one bit. I was still on a high. No cancer in my lymph nodes. I still am so happy about that. There is much sad history in my life about cancer with boyfriends, which I haven't really even gone into yet . But that alone makes me very, very happy that I have no cancer in my lymph nodes.

I was checking the surgery sites quite often to make sure they were healing really well since I'm still even now on prednisone. Being on steroids makes you heal in a lot of ways and on the other hand makes it hard for you to heal in other ways. I'm taking it to help get rid of this darn asthma cough that I still have! It's getting much better, but it is still there and my voice is still rough. It's making me, or as some would say, I'm allowing it, to make me grouchy. Turns out quite a few things kept getting me grouchy through out the day yesterday and I just kept getting more and more grouchy. My poor sister was with me most of the day and guess what happens? I started snapping at her. So we know what to do when we get like that with each other in the past and I think it's still a good policy now....take our separate ways for awhile.

Anyway, I was all set to tell the good Dr. that one part of the incision at the breast site had not held together and I was going to even ask her if maybe a stitch or two might be required. It was still weeping from time to time but not bad. It just wasn't going to heal as nicely as the rest of the wound.


I had said it was ok for my sister to come back with me. She is supporting me totally with all this and there is so much information to absorb with all this. I didn't know I was going to be examined right away first though. So she was there for the whole thing. We are so close and closer and closer now, it didn't really matter. Some funny things have happened through out all this though.

The first time she saw me naked she said, " You don't have any nipples!".

I looked down knowing she had to be wrong because I had been fully aware that I did and nothing in that area had changed lately and I hadn't even had surgery at that point.

I looked back up at her and asked, "What do you mean, I surely do?"

"Well, mine are dark and you don't have any! How come yours are like that?"


She was really being honest and quite surprised I could see.

Yeah we are sisters, but still we have different coloring. When she was just a little kid her black hair was so black it honestly had blue highlights. It was so beautiful. People would stop my mother and accuse her of dying her hair and how could she do that to such a young child. She has always had darker skin than me.

We have olive skin from our fathers side and my mother has blond hair and blue eyes. Our older sister got both of those and my younger sister and I got the darker hair and brown eyes. People use to think we all had different fathers or even mothers but we are all from the same two people. We all in this world just have many colors and it shows up even in one family.

I looked back again at her and said, "Well we just have different coloring. I'm more pink. I have nipples but they are more pink than yours is all. For heavens sake."

I really thought about it and to tell you the truth having lived in S.F. for all kinds of reasons, one being hot tubs, I had seen a lot of naked people. I had to think back to that and realized most people don't see other people naked. Too bad really. Also drawing naked people in art school I had seen a whole lot of naked women and men and I had become quite use to it.

So it seems I'm getting off the subject but I'm not. I'm talking about the beautiful body and loving or hating it. That's what I'm talking about. I've learned a lot about that in the past years.

I love my naked body. I really do. It's not a beautiful one. Not by far. But I like it and sometimes I really love it.

When I found out I had breast cancer and had to have surgery on my breast I was in mourning for my breast.

I really was. Just for what ever was going to happen to it. I kept and still do, carress it and cuddle it and hold it. I talk to it. I was doing it in the Dr.'s office with out really thinking about it and my sister saw me do it.

"That's cute." she said.

"What?"

"The way you're holding your breast and talking to it." She was smiling.

"You poor thing. I'm sorry for you. My sweet baby."

I hold it and cuddle it. I don't mind that one bit. I had told my sister that I love my squishy large breast. I didn't want to loose any of either one of them. She was surprised and raised her eyebrows and looked at me. I guess people don't usually think like that or especially talk like that. But, yes, I love my breast. I really do.

So here I was on that darn examining table again with that horribly ugly green, crinkly, hundred old giant gown on with the Dr. bent over me looking at my beloved breast. Her face was right there next to mine which of course couldn't be avoided.

I was spouting off about the site not healing quite all the way but the surgeon had other things on her mind and I could tell. You can tell when a Dr. is not listen to you. Unfortunately, that is often.

I didn't know why though. I had just blocked out some of the things from my mind that I had thought about a lot before when I had to make a decision whether to have a lumpectomy or a mastectomy. I had just put it all out of my mind for some reason. One thing that could happen with a lumpectomy was that not all the cancer would be removed because it was a guessing game when it came right down to it.

She started talking about the surgery itself and she wasn't talking about what I had been talking about. I knew something was wrong but I had to catch up to her mentally.

Switch gears fast, Valorie.

Took me a couple of seconds to do that, so I didn't really know what the first couple of things she said was. That's why it's good to have someone with you when you go see Dr.s about serious topics.

Then I realized she was talking about the pathology report. Why didn't she just say that? It would have helped me a lot. So the pathology report said what? It said she hadn't gotten all the cancer out. Great. I had forgotten that was a very real possibility.

She was being really nice and gentle and for my part beating around the bush.

This is great for some people but I hate it. Just give it to me and don't make me have to guess what the hell you are talking about. She hadn't actually said it yet even. I had figured it out.

"So you're saying you didn't get it all, right?" I was being a little ticked off because she was wishy washy and not direct.

"Please, just tell me out right, be direct. I want to know."

"There are two parameters that still show cancer cells and we have to get those out."

"So I have to have more surgery then?"

"Yes. We have to get all the cancer out." Her face was still right there bent over my breast looking right at me and still touching my breast. She was being tender and caring but honestly it was strange.

We're talking about my breast and tossing more of it away and more surgery and more mental centering and gathering.

The mental part of excepting all this information is hard. It feels like compacting data and putting it away into a special place that sits there. That is the place for it. It stays there for further investigation and processing at a given time.

It stays there all the time and it is always open. It may be only slightly a crack or it maybe flapping in the wind, but it is always there and always open. Sometimes I try to close it all the way, but even if it seems like it is closed, it's not. There is always that space, that little dark space that can never be reached to close all the way. It's there in everything. That little tiny open space is always there day and night even if it doesn't seem to show itself.


The surgeon was still being so gentle and nice and really not quite like the way she had been in the past. So was this really bad news she was telling me?

Actually right now that I'm thinking about it, maybe she was scared that I might blow up like I did in the hospital when the surgery was canceled. wow. I hope not. I was really terrible that day. Maybe she was afraid. wow. Well I didn't blow up. I knew this was a real possibility.

"So what kind of surgery, are you saying I have to have, a mastectomy?" The way she was acting I thought that was going to be the bad news.

"Well from what I can tell about you, you want to do breast conservation so we can still do another surgery to remove more from the area and see if we can get a clean area." She said something like that but not verbatim.


"That's still a choice?"

"Yes, of course!" That was more like her. She wouldn't say that if it wasn't a choice of course.

I just laid there. I was trying to absorb all this again.

Then I asked,"So then since this time will be even more of a guessing game to remove the cancer than the last time, if we don't get it this time, then I will have to have a mastectomy ?"

"Yes, that is correct. We will have destroyed too much tissue to do anymore surgery like this and it would have to be a mastectomy if we don't get a clear margarine this time."

I just laid there as before and tried to get all this in the right place in my brain. Was there room for all this information I had to put away there? How far back did it have to go? Where did it have to be filed?

There was the fact side of everything and there was the emotional side of everything. The emotional side had to have a double lock most of the time. A secret lock. I only have the key and no one else gets it. Most of the time I have to put that data in there and lock it up right away, don't even get to process it much at all til later. Got to put it in there and deal with it later on my own. Let a little out when I decide to and how much.

I locked that in and decided to deal only with the next step of course which was to have the next surgery and hope that all the cancer would be removed.



My sister started asking the surgeon questions, but I didn't hear them.

Then the surgeon said that since it would be a much easier surgery, I wouldn't have to be out all the way this time. We could do it there at the satellite surgery center.


Oh no, was I going to do it there? We talked about that a lot and the Dr. was very sensitive to the fact that I might not want to do it there. But, she had a cancellation there this very week and the sooner the better. Since I wouldn't be out all the way I agreed to do it there.

"It's just tweaking." My sister was saying with a smile.

"I've had twilight surgery twice before and it 's easy. I loved it. It's so easy. Don't worry about it. It's just tweaking, Val." She was comforting me with a soft, happy voice.


She was saying it and kind of bouncing in the chair trying to be really happy about it and supporting me and all that. She didn't want to seem upset about it, I understand. But I thought she was a little too happy about my surgery, honestly. It was a bit strange.

"Ok, ok." I get it.

"I've had twilight surgery twice before myself" or more I wasn't even sure I was thinking.




I know it's so hard for people to be supportive and what in the hell do they do?

What can you say and what can you do? I think the stress for care givers is much harder than most people ever know. I have been there too. I know people want to give you love, support and boost you up and help you some how. They don't know how and the more they love you the more frustrated they are. I know this. Their stress is tremendous and I think might be even as much as the one they love.

The best thing most of the time is simply being there. Your body, your soul. Your quite support, believe it or not. The person that is there to hear everything and know everything. The other person. You are that person. To listen to the loved one. Just listen a whole hell of a lot. Not forcing anything if the person doesn't want to talk, of course. I'm a talker. But, if the person does want to talk, just listen. You don't even have to respond much. You most likely wont say the right thing anyway. Be ready for that most of all. Just about anything you say is a lot of the time is going to be...he/she didn't get it, didn't understand. You simply can't experience what that person is going through or heard. Silence goes a long way. Listening goes even farther.


For me, I don't like things to be trivialized or dramatized. I think I can say this for many people in my situation. It's really not for others to decide anything about my/your experience. This is hard because this is confused with supporting the that person.

For me, my sister telling me that my surgery is just "tweaking" and that it's not a big deal did not really go over well with me.

It would have been better for me to express to her how I felt about it. In this case I was suppose to try and accept how she felt about it. She told me that over and over. She wanted to comfort me and for me to accept that most of all. I understand that, but sometimes it's really hard.



This Thursday, surgery again. Boy.

I'm not looking forward to this at all. I told the Dr. that most people would be more scared about having general surgery and not scared about twilight surgery but I was the other way around.

She talked to me awhile and I just tried to settle down about it. I don't like it one bit. I have had twilight a few times and when I'm not suppose to feel anything I have. Oh well, I never died from it and this will save my life. Just get it over with. It will probably go fantastic. Thursday will be here really fast so I don't have to think about it forever. Just get it done.

I didn't know I would talk and post so much about what is going on for me. I think it is probably way too much, but it seems to be good for me.

I like drawing and painting and photography and guess what, I like writing too. When I was in college I entered a writing contest and one of my friends got so mad at me. She told I couldn't do everything and what was wrong with me? She was really angry for some reason. I never did figure that out and I remember it well.

I'm working on a big drawing now and I'm really getting forward on it finally. It takes a lot of planning and thinking and prework before actually drawing. I call them projects. I love to draw.

When I was in college one of my professors came over to me while I was drawing and made the remark that I really liked to draw. I thought that was the strangest remark. I looked up at him and said of course. I was an art major at a huge art school. He said a lot of students didn't like to draw. wow. I've never forgotten that.

Great Surgery

Well this is the day after Thanks Giving. Everything went so great it's unbelievable. I'm so happy I'm ecstatic.

First right to the greatest news of all: I don't have any cancer in my lymph nodes!

Isn't that fantastic? The way the surgeon had been implying, I was so sure that not only was there cancer in the lymph nodes, but that it was going to be a lot in a lot.

I have none! I still am having a bit of a hard time understanding it to be truthful.

When I came out of surgery the first thing I said was,"That was fast."

How would I know, I don't know? But it was fast because they didn't have to remove as many lymph nodes as they had thought they would. It only took about an hour instead of an hour and a half as I understood it.

I kept trying to ask questions through my drugs and surrounds fluttering in and out of my eyes.

There was the nurse sitting right there beside me at the computer just as before I had gone in. Well I had a lot of questions for her.

"How did it go?" I asked as if I hadn't even been asleep out of this world for some time.

"Oh it was great. You have no cancer in your lymph nodes." she said almost casually still looking at the computer as far as I could tell.

What the heck??? Did she really just say that? Did she really just say that to me? The most wonderful thing in the world and so casually like she was saying good morning? I must have been dreaming for sure. I'm not awake yet. What did she just say for real? I mean really.

"What? What do you mean?" I was trying to wake up and be clear and know what she was really saying. "What did you say?"

"You don't have any cancer in any of your lymph nodes."

"Not in any of them? None of them? None of the cancer spread?"

"No."

"I know I'm being a pain, but you mean I don't have a drain or cancer there. I don't have a drain even?"

I was trying to feel my under arm and what had happened there. I could tell right away the breast had been dealt with. There was pain there for sure, but something very strange was going on with my arm pit. There was no pain. Nothing. I felt nothing there.

I had expected to feel most of the pain there in fact. I had expected to feel things there and puffiness and something, a drain, under my arm. I had expected to deal with my under arm far more than my breast.

I felt nothing there right now. Could this be real?

"I don't understand. I'm sorry." I was really confused but I had to know right then.

"I was told the cancer was 'invasive' so then where did it go?".

I was laying there just minutes after surgery with the one thing I didn't want. I was wondering if I should have had a mastectomy. It was only mins and I hadn't even woken all the way. How could I be thinking that? If it's not in the lymph nodes then where the heck is it. Is it all in my breast then?

"If it's out of the duct then does that mean it's all over my breast now or does that mean the Dr. got it all out of my body with the tumor?"

I don't think she really answered that one. I don't know cause I was very confused and elated at the same time. I knew I had made the right choice and still think that, but I was very confused.

I also was on a very big high that lasted that whole day, the next day and just now is starting to come back to reality a bit. I think. I mean a BIG high. I was dancing and singing and talking like I was high...which I was a bit on drugs, but I was high on great news too.



It was a great day going there to the hospital. I was nervous and my sister told me I talked all the way there. It's a bit more of a drive to get to this hospital than going to the satellite hospital, but I will never have any more surgeries there, God help me if I have to any more.

It was very nice that day in the beginning. It was sunny and pretty driving into Cleveland. You could see the clouds coming in from the lake as my sister pointed out. There is so much lake effect here, something I have never heard of before I lived here, but is quite famous and known to anyone on the east coast.

We got there and right away my sister says, " This is where you had your legs operated on. This is exactly the place. I remember this place."

She started to go on with more info about this and I snapped, "Don't remind me of any of my other surgeries. I don't want to think of any of them. None of them. I told you."

I got very nervous right away. The first leg surgery was the one in which I was not out all the way and I could hear people talking to me and telling me to keep breathing. I could hear them talking to each other and all kinds of things. I could feel that pipe in my throat and them trying to push it more or something. It was horrible to be truthful. I was a nervous wreck for the following surgery because of that. Now they have to put some kind of thing on my forehead to monitor my brain waves and make sure I'm really out.

"I guess I'll have to tell them about not being all the way out once again, but don't talk about any of it or them. I don't want to think about any of them right now. None of it." I was very touchy. I didn't want to be touchy but I was. You'd think with all my experience I would be good at it, but it's always new and different.

I didn't remember this place at all. I guess I block them out or something. My sister sure did though. She's always there for me and she has a totally different experience of things.

They took me back really fast. We hugged more than a few times. I didn't want her waiting there not knowing if I was having surgery or not. It's stressful. But here, they wouldn't let her or anyone come back with me.

It was very crowded and very "hospitally" there. Very different than the other place. I felt more comfortable. I felt like this was the right place to be for me. Most people I think would feel the other way around, but with so many things going on with me I really felt like I was in good hands.

The anesthesiologist came in. She was a really nice woman with all white hair. My older sister has all white hair. I think that made me feel good. She spoke softly and looked straight at me right off. She already knew lots of stuff and was right on top of everything. She still asked me a ton of questions. She said every thing was fine and surgery was a go. I asked if someone would go out and tell my sister that so she wouldn't have to wait for colors to change on the computer board in the waiting room and all. They were great and someone did go and tell her. She told me later that it was a good thing to hear like that.

The surgeon came in and she was happy. She said she was worried about the eye. I had been told all this stuff about how they were going to put special meds and eye pad on my eye and etc etc. That I was to put my own med in my eye right before surgery. It was a really big deal. The redness that I was worried about on my breast was never even mention. Who knows, not me for sure.

I was so happy and the surgeon was so happy that surgery was a go, I put my hand up and gave her a high five. Surgery was on. She looked a little strange at first and realized what I was doing and she smiled and put her hand up and we did a high five. Now I have to say, I have never done a high five with a surgeon before.

In the surgery room she held my arm and we talked. I was talking up a storm. I guess I really am a talker. I was talking to everyone. I remember saying something to the surgeon and then I told her I didn't even know why I asked her that because she didn't answer me. But then I told her I was glad she was there and holding my arm.

Then they told me they were going to give me something that would really make me feel good and then I would be out. I was out before I knew I felt good.

The day after surgery I was feeling so good and my surgery sites felt so good, I asked my sister to help me take photos of them. Yep I did. I told her I was scrapbooking all this and that is very acceptable to everyone. They can get their heads around that easily. So I have some pretty interesting photos of this.

Right away in the hospital I wanted to see my breast. The nurse started to grab my hand to stop me but I was too fast. I wasn't freaked out at all. I've seen too many surgery sites on me I guess.

I had already known there would be blue dye markings of some kind there. Sure was. Very colorful. There was the long reddish line of the surgery and the blue. It was puckery around the where they had glued it together. They didn't use stitches, they supper glued me together. It's pretty cool. It will heal much better. No poke -a -dots to go away.

Being an artist, the first thing I thought was it would make a really pretty water color painting. I swear to God that is what I thought.

We took several pictures and then my sister told me, "Don't you dare let me forget to down load these photos before we leave for Thanks Giving."

"Ok, I won't. That would be terrible. These are just between us and what I decide to do with them."

When I drove home the next day and walked through the door, I ran to the phone.

"Lyn, Lyn, we forgot to down load the photos. Don't take the camera without getting rid of those photos!!!"

I was terrified. Thanks Giving was going to be with a one year old boy, two four year old girls and an eight year old girl. They always use the camera and want to see the photos that have been taken. They pick up the electronic items and use them more than the adults. One of them could go through those photos in a second and see the old photos in a snap. Now that would be horrible.

My sister took good care of that. All was safe.

I am wondering if I will put them here or not. There is a big part of me that wants to only because I am being very straight forward here and very open about everything. Also because it might be informative for some people.

It might also be too much. I have to really think about this one. I'm going to take photos of the stages for a record and I can decide later. I may just post some drawings or paintings...or nothing. I'm just not sure yet how private or public I'm going to go with all this.

For some reason people show their surgery scars. I don't want it to be like that. If I do it, it will be for more informative reasons and/or artistic reasons. Not sure yet and I'm not going to just jump into that one.


So I really enjoyed Thanks Giving by myself. I was so happy that the cancer had not spread into my lymph nodes that I didn't mind being home by myself one bit. I watched t.v. and was so thankful all day more than I have ever been in my whole entire life.

I am so thankful this Thanks Giving I am almost speechless.

I want to give thanks to all my friends and all their support. All their prayers. All their love.

Thanks to all my family for all their support and love and prayers.

I feel so loved and cared for.

Thank you every one.

Adding photos and drawings

Well I just added a photo of me finally of with my hat. I put it on the very first post. There is going to have to be some refining and such with all this.

Now that I will be settling down some I will be able to add some of the art and photographic aspect to this blog. I really want to do that and I just felt I needed to do that tonight. Just a touch. I have LightRoom and I have no idea how to use it actually. So I will be trying to bring that into this once, I figure that out. Thanks to Lee and Bill I should be able to do that soon.

So my blog should soon begin to show more of the artistic side me which would make me very happy. I've had way too much stress, time for the relief. spread the love.



I just realized I should at least pop something in here right now for fun. I love drawing apples and you'll see more of these. This a colored pencil drawing I did two years ago. You would have to look close but there is a fly on the middle apple. It's actually very classical but I put them on a paper bag to make it a little more this century. I like how they glow.

Latest surgery schedule

I am now scheduled for surgery Tues 23 at 11:45. That is if all goes well.

I woke up with a very nasty eye infection. I have no idea how or where I got it, but I got it. Just in my left eye.

I began to wake from a very nice sleep last night and as I was trying to open my eyes my one eye seemed a bit reluctant to cooperate with me. I just rested and thought that it was a bit strange but I didn't really think I had an infection. I rolled around and woke at my leisure thinking it might be a bit of a long day today waiting to find out when surgery was going to be. I still had a bit of a time with my eye so I finally decided to get out of bed and see what the matter was.

I looked in the mirror and was shocked to see my eyeball totally red and a drippy gunky eye with crusty stuff on it.

I couldn't believe it. Was this going to be a problem now?? I had just had this happen 6 weeks ago when I first got this terrible cold I got or what ever it was. It went from one eye to the other in less than a few hours. I got sicker and sicker by the min back then. Well I knew I wasn't going to get sick but I sure knew how much worse that eye could get. Right then it wasn't swollen or red on the skin around the eye and I wanted to stay that way at least if not way better.

I got on the darn phone and started making calls. I knew I had to fill in everyone about all my news and try to get antibiotic eye drops as fast as I could.

All this took forever. It is a well known fact that you can't speak to a human being anymore and sometimes you just simply have to. But that doesn't matter, you're not going to get to. So I spent the whole morning and afternoon trying to connect with this Dr. and that Dr. and all their nurses.

The finally decision was that there really couldn't be a decision until tomorrow when I'm there at surgery and everyone can see me then and how I am cough and eye wise and each Dr. can make their own decision on what they will and will not do.

So I'm showing up and seeing if it will go forward. I have a feeling it will. My eye already looks much much better though there is still a little redness. I've been extremely careful not to get it into the other eye or in my system somehow. I even changed the sheets a few mins ago.

I'm still coughing but it's only a little and I still have tonight and tomorrow to improve on that too.

So, please anyone reading this, pray for me that I get to have the surgery tomorrow. I really need to do this. Oh yeah, the surgeon's nurse thought the redness was no big deal and disregarded it right away. So I really do hope it's all straight ahead now tomorrow. Wish me luck please.

IBC and why do I even know what that is now.

My sister is beautiful. She made a "mock" Thanks Giving Day dinner for me with some family tonight. She told me she was doing it and I was excited about it but I hadn't realized what a big deal she was making out of it.

She invited our mother over. She needs to eat much earlier these days just because of age. We try to to accommodate that some, but having dinner at three is hard. So she told me to come over at 3:30 and we would have dinner at 4 or 4:30.

I walked in and she had decorated the whole house for Christmas. She had all her decorations out and the beautiful giant tree. She loves animated things and they were all out. It was beautiful, sparkling and glowing like a movie. I went into the kitchen and she had the crystal, china and silver out making a gorgeous table with candles and china bowls and everything! I was stunned. She had made home made bread that morning "not by machine" of course.

She makes beautiful perfect hand made bread and I thought I would never make bread ever of any kind just because she was so good. She had the stove full with cranberries, potatoes, dressing, gravy, special string beans and the oven ready with a twelve pound bird. I helped her take that out and it was absolutely perfect. It really was. She has been cooking big family dinners for so long she can bring lots of food together all at once and have it ready to eat hot for everyone to sit down.

I was so impressed. She kept making excuses because she did not have all the food like yams etc. but I thought it was fantastic. Far more than anything I was expecting at all. I thought I was coming over for a little bit of turkey and stuffing with some potatoes. Far, far more than that.

I just couldn't get over how much she had done and just so I could have a Thanks Giving Dinner in case I couldn't now make it to the "real one" next Thursday. My surgery now is Tues and I'm the only one that thinks I might be there in spite of that. She gave me a whole dinner to take home and freeze so that I can heat it up and eat it if I can't be there with the rest of the family that day.

I was so thankful and happy and very pleased. I really felt loved and felt the rooms were filled with love. It was truly lovely.

At the end of it all I took my mom home to her house cause she is on the way for me. It too was pleasant. I haven't seen her much at all lately, trying to stay away from people who were sick so that I wouldn't get sick and not be able to have surgery. That didn't work cause I didn't get surgery anyway.

I got home and peeled off my clothes to put on my new pajamas. I pulled off my bra and as I was looking down I saw what seemed to look like very dark bruise right were my tumor still is. I was shocked and got in more light to look and see what in the world was going on. I was alarmed actually.

I got up to the full length mirror and more light to see the skin over the tumor area was bright red. As big as a half dollar or so. It was very red. It has never been like that before. I kept looking at it.

I was flooded with emotions. I was angry that I even had to think about it. That damn tumor wasn't even suppose to be there. I wasn't even suppose to have to think about this anymore. But I did have to. It was very very red. It is red.

I started crying and being extremely emotional. I'm just so emotional now. I can't help it. I don't know what is going on with anything anymore. Why did I have to deal with more now when it wasn't even suppose to be there???

I picked up the phone telling myself that my sister told me I could call her anytime. She told me she was there for me and I could call any time. So through my tears I punched in the numbers and I called her. I was crying so much I couldn't talk. I just kept saying, "you told me I could call you so I am." She just kept asking what was wrong. I knew I wanted to tell her but I couldn't even get it out from the tears.

Finally I told her it was bright red and it never was before. I was alarmed and she was. We talked about it and I said it had gotten pink before when I took a shower but it would go away and it was fine. I think I had mentioned it to some nurse somewhere but I can't even remember. I remember mentioning the pinkness to someone some where. I told my sister if it was still really red in the morning I would call the Dr. After we talked I decided I would call no matter what and tell her nurse that it had gotten really red. I told my sister I would hang up and go to bed.

I went to google it of course.

After much searching and almost giving up I found what I might have been looking for. Who knows, not me. But now I know I have to talk to the surgeon's nurse and tell them about this.

There is a thing called IBC. Inflammatory Breast Cancer. From what I could read and understand, one symptom is when the skin over the area of the tumor gets pink or red and /or skin changes.

This might change things with surgery or treatment after wards. I didn't like any of what I read to be honest. Nothing about my kind of breast cancer sounds good. Not any of it. Maybe I don't want to know. I know the more I keep reading things and understanding this, the more serious I am taking this. I now fully accept that I have breast cancer and it is a very bad kind of breast cancer. I don't like it and I want to get on with it and get into recovery mode.

Maybe once again this delay is good in the fact that now this new development will be very important...or maybe it doesn't make a bit of difference. I don't know. I know nothing.

I want this surgery done and done now. One of the things that I read is that sometimes with IBC you have to have a mastectomy instead of lumpectomy. I don't know. I'm not a Dr. and maybe I read it wrong even. I don't know what my case is or even isn't. I want this stage over with. I want it on with. I want to move forward for God's sake.

I really never thought it was going to be this hard so early on. I haven't even gotten started with any treatment and I'm about to go loony tunes.

Surgery Canceled

Yep, surgery was canceled yesterday. I was laying on the gurney with the needle in my hand all dressed to go into surgery and the anesthesiologist came up to the foot of my bed and started asking me questions.

I remembered him from my last surgery there for my gallbladder. He was only looking at his little three ring binder at first asking me questions and then I coughed.

I didn't want to cough but I did. Just a little dry puff of a cough and sure enough he stopped and looked up at me and asked,

"Why are you coughing?"

Just like that. He stopped what he was doing and zeroed in on one little cough. I knew I had to talk about my asthma and the damn cold or what ever I have been having for six weeks now. I can not say here what awful words were going through my mind at that moment. Why couldn't he just keep ignoring me in front of him and keep looking at that darn book and asking me questions. But nope. He had to stop and actually look at me and converse with me. The only time ever I didn't want a Dr. to actually notice me and talk to me. humm.

We spent ten or more minutes talking about my cough and the more I talked the more I coughed. But just a little dry nothing cough. I didn't want to talk cause I knew it was going to make me cough more.

I told him, "I haven't been allowed even water or anything to drink since midnight last night and my throat is dry, I have Sjogren's disease which makes everything single thing in your body dry in the first place and I have chronic asthma. "

I told him that my primary Dr. told me I was ok for surgery, my surgeon had told me I was ok for surgery, the pre admission Dr. for surgery had told me I was ok for surgery!!! And most of all my asthma Dr who had been working with me almost every week or two getting me ready for surgery told me I was ready for surgery. They all told me I was ok for surgery. I had told them every thing and I had been asking and worrying and wanted to make sure I was ready and ok for surgery and I had been asking everyone of them.

He said, " Well that is debatable."

I started crying and told him through my little fighting back tears, "Don't tell me I can't have surgery. I have waited three months to have this. I can't wait any longer. Don't you dare tell me you are going to cancel this on me."

He just turned away from me and walked away.

My nurse came to me and was trying to settle me down and she told me to stop and not get emotional or start crying because then I would surely start coughing really bad. I knew she was right and I got a hold of myself and stopped right away. I couldn't have that.

She was very good and talked to me for awhile and calmed me down and then.......

I saw them coming.

Both the surgeon and the anesthesiologist came together and I saw the writing on the wall.

I said, "Oh no. It's a consult. Don't tell me." , out loud to them. They were still walking toward me.

They started to sit on both sides of my bed and that is NEVER a good sign. When a Dr. wants to sit on your bed to talk to you it always serious every time. I know this from experience. There is some psychological aspect they are trying to get on your level and be intimate with you or something. All they have done is get in your space to let you know this is the right thing for you. I know this, this is what they do. This time I was being ganged up on...and this is never good either. If more than one Dr. comes to sit on your bed or talk to you, you've had it.

"Don't tell me you are canceling this. Don't tell me that. I have to have this surgery today I can't wait any longer. I just can't." I was angry and I wasn't hiding it.

I was not pretending to be noble or logical or that everything is fine and that I can take anything you dish out. None of that was with me yesterday. I had had it. My logical self stepped out to the waiting room and my emotional self was right there full blast and getting full voice. I mean full voice and for the next hour or more. It was horrible and that is being nice.

They were in fact telling me now in stereo that the surgery needed to be postponed. I was having a fit. The surgeon said we can do part of it today and do just the tumor to get that out and then do the lymph nodes on another day. She thought this was giving me good news. I wasn't having it.

"I don't want two surgeries! And what if I come back in a month and I cough once and you tell me no surgery then too!" I was looking straight at the anesthesiologist. This was a very real possibility.

He said, "That is a very good question. I don't know."

I was really having a fit. I was hitting the bed with my hands and just getting madder and madder. I told them I could have a little cough like this for months. We argued about this over and over. How long would I have to wait and I couldn't wait any longer. I had had enough of this. I told them I discovered this August 6 and this was Nov 18 and I just couldn't wait months more. I couldn't take anymore of this. It was one of the worst times in my life.

The surgeon was talking to the other Dr. and was talking about the wire and stuff and I'm thinking what wire!!!

Then she says wait, "You don't have a wire do you" and she looks at my breast and she turns to the other Dr. and says,"I can't do the surgery on her tumor either. She can't have any surgery today."

I was so angry at that moment it was all I could do to keep from ripping the i.v. out of my hand and running out of that place. If you had been there with me you would know how serious I am.

These people didn't have their shit together at all. She didn't even know if I had a freakin wire in my breast for surgery or not!!! I guess that is to help locate the tumor but mine is so blasted big you can just feel it by the touch. You don't need no freakin wire. Then she realized, I assume, that minor surgery was out of the question and I have to be put out for that too.

We had a lot of words after that. A lot. I was there from 10:30 to 12:00 without having surgery.
They could have done surgery faster than that. I'm serious. They told me surgery would from an hour to hour and a half.

When the surgeon and I finally agreed on having surgery next Tues at the main campus with a regular hospital and full staff and me going back to see my asthma Dr that day for more meds, I began to calm down. I was accepting it but not at all happy.

I was finally smiling and laughing and thanking everyone for helping me and putting up with me. I was really much better at the moment and I know they have a very hard time of dealing with patients. I do know that. And I wanted to thank the nurses especially because they really are the best and they were very very good with me and they were the ones that calmed me down. That is really the truth. I don't think Dr.s and others and maybe patients too, realize how special, important and indispensable they are. Every time I have ever been in the hospital the nurses are the ones that have made it not only livable but sometimes life saving. That is not over stating it either.

So I got through my surgeon being very over dramatic and yelling at me. I did even have a talk with her about that too. It was a long long day.

She had done this with me before in her office and now she was really doing it much more here.

Finally I said," You sound like you are mad at me. You're yelling at me and throwing your arms around and making faces at me."

"I'm not mad at you, I'm just trying to work things out for you." which she said angerly.

I just waited for a long moment and kept looking at her. I was really having second thoughts about this entire thing. I was really wondering if I should change my whole plan and place for my treatments. I just kept looking at this women and thinking do I want this women working on me and this whole place that keep messing up on me.

She told me, "I can squeeze you in next Tuesday for surgery and we do all of it then."

She was still making faces and empathizing that she could squeeze me in then. It didn't feel good to me, any of it. I didn't want my surgery to be squeezed in. Especially not by a Dr that was angry at me already.

"Well why don't we just wait and I'll schedule for when you aren't so busy and I'm better. I think that might be better." At this point I wasn't so sure of any of this anyway.

"I'm busy all the time." She started leaning over that darn little table at the end of my bed again. She was getting angry once again and making those darn faces. I really don't think she knows how she looks or sounds to the patient. Surgeons are notorious for terrible bedside manor and she took the cake for me.

"I'm over booked through January and I'll have to squeeze you in no matter what. I happy to do that. I want to book you and I will take all the time you need when I am working with you. I take all the time every patient needs, I do not hurry with anyone." She was leaning over that table and dropping her arms down and pushing her head toward me and just exhausted even telling me.

I told her, " You seem more upset about all this than me and I'm having a hard time. "

She didn't like that one bit which I've never talked to a Dr. like that before but I've never had a Dr. act so unprofessional before and I have had a lot of that with this group since I found the damn tumor.

She dropped more and leaned in more, "I'm just trying to do everything I can for you. What more do you want from me?"

Oh please. I want you to be more professional on every level for one. The only level I can figure out is that everyone tells me you are a good surgeon. Is that enough to go on? I've asked Dr.s and patients. On several occasions and sometimes more than once. About her. They all came back and said she was good. I never asked about her bedside manor.

I said ok lets do it on Tues. Lets do it. She got very calm and happy then. She was even smiling. I guess that made her very happy.

After that her nurse, the surgeon"s nurse came in to talk to me. After all this.

She came in and kneeled down beside me and started rubbing my arm and my back and I thought I was going to smack her. I know I sound awful. But she was irritating me so much. She kept telling me every thing was ok and every thing would work out.

I wasn't scared, I wasn't nervous about surgery! I was very pissed off and irritated. Finally I just told her to stop putting her hands on me and telling me every thing was ok. I started yelling at her.

"Everything is NOT ok. It's not ok. Nothing is ok. You people keep pulling my strings and hanging me around. You tell me to let it go and just keep going forward and I can't go forward. No one will let me go forward. Nothing is ok. Stop telling me everything is ok. I've waited over 3 months for this to go forward and for everything to be ok. Stop telling me everything is ok!"

I was awful, I'm really telling you.

I told her I wanted the needle out of my hand and she said to me,

" Well you need that in your hand and don't drink any water til we know when you're having surgery or how things might be changed."

I wanted to smack her.

I told her it had been canceled. I told her again, it's already been canceled. She kept talking smack and not knowing a thing she was talking about and suddenly to my surprise I turned to her little head sitting right by my freaking elbow and I said,

"Do you know anything you are talking about? Do you really know anything?"

"I'm here for you Valorie. I'm here just for you." she said in this really sickening insincere voice that I felt at the moment no matter how sincere she was or ever could have been.

I was looking right DOWN at her and I said in a very unpleasant voice I'm sure,

"Do you really have any idea what you are talking about?" I wanted an answer, not smack to placate me and treat me like I was five!!! She told me she had just gotten there and didn't know everything but she was here just for me.

"Then you better go catch up with things and get up to date before you start telling me things you don't know anything about because I have had my fill of that today alone."

I was just so furious and irritated I really didn't want anyone to touch me. My sister started to put her hand on me and I shrugged her away and said I didn't want anyone touching me, I really needed space right then. I was kind of afraid if any one touched me I was going to hit them or something. My feelings were so raw it was all I could do to contain them and I wasn't doing a very good job of it.

So I finally, finally got out of there and my sister and I went to lunch. We had a good lunch and my sister is really great. I can talk to her so much and just let my feelings out. She can too and we can get angry too with each other sometimes.

We will get angry with each other and I guess if anyone else is listening we must sound terrible, but then three mins later we are just great and laughing. That's how we are. I love it and that is what makes us have a great relationship. We don't let anything get pent up. We like it that way. She told me once that when we had a big big fight about something and she told her husband she was never going to talk to me again. We must have a had a huge fight about something. This was a long time ago. We hardly ever, never fight a whole day.

Her husband told her she would be talking to me the next day and she was mad at him cause he was right and he's always right. She doesn't remember what the fight was about but that her husband was always right. lol

So I had to tell so many people that I had not had the surgery. Boy, the support is great but the telling of everyone all the steps and missteps gets hard sometimes. My sister helped with that too. I couldn't even post simply that I did not have surgery. I thought about it, but I couldn't even do that.

When I went to bed last night I was a wreck. My asthma Dr. put me on 50mg of prednisone for the third time now and added another inhaler. Can't sleep on prednisone if you don't already know that. Now I'm on 3 inhalers, a rescue inhaler and the nebulizer with xzopenx again to get me up to the surgery so they don't turn me away again on Tues.!! I have to get better with all that, right? And now it's going to be just two days before Thanksgiving. I hate that. I do not want to stay home for Thanksgiving. I had to do that for my gallbladder and it made me sooo depressed I never want to do anything like again.

Thanksgiving is my most favorite holiday of the year too! No one has to buy gifts or anything and everyone just gets together and joins in food and celebration in giving thanks for what they have and have had. I love it. It's the best of all. I'm not missing it if I have to be hauled in on a stretcher. LOL. I'm just not. It's an hour drive to my niece's house is the only hard part I think. We shall see.

So enough, a long post again. It's got to get better from here.

So I'm going to play dominoes with my very good friends today instead of doing recovery with the boob tube and that will be the best thing in the world for me. First everyone will be shocked as hell that I am there unless Marie gets there before me and others, for her to tell them.

Marie is such a good friend. I walked into the surgery department and there was Marie!! I was so shocked. She was already there and I didn't know she was going to show up. So while I was waiting to be taken in it was really nice chatting with her and my sister. Then I went in by myself to get ready and then went through all that crap. They came in and discovered it was canceled and I was a wreck. Poor Marie. I felt bad she was seeing me like that but I couldn't stop my emotions. She is such a good friend and she has breast cancer and has gone through all this at some level so she understands a lot of the emotions that go with it too. She has been a blessing. She has had breast cancer for two years now.

She is doing really well but she says, "Every time you go in for a check up, your heart beats and you are scared no matter what. It just happens until you leave and everything is ok. You have to do that for so long.". I knew that from her talking before I knew I had breast cancer and I have found that out since. Five years is much longer than regular five years when you have cancer.


So I'm off to get ready for a much better day and maybe shopping this weekend because buying things has just got to make things better. It just has to. I don't usually shop, you have to understand. I spend all my shopping money on art supplies and not much on clothing. One women told me she understood it completely. She said that it would make me feel better when I started all this stuff. I could put on new clothes and feel more important and feel like a I looked better. So I think I just might go out and buy some more clothes. I knew there was something behind it. :)

Surgery is Today

Well they called me..twice in fact. Once to tell me the time to come in for surgery and then again to ask me to come in earlier. So I'm going in at 10 am today, Thursday Nov. 17.

I have gotten lots calls and Delma even came over for a short visit. I've never had so much attention before a surgery. It really does help to talk about it and share with people. It helps with the stress.

They are arguing about whether I have to stay over night or not. The surgeon is adamant that I do not have to stay and should go home and the anesthesiologist says I may just have to stay because of my chronic asthma and I still have a sore throat and coughing already before surgery. We'll see I guess.

I will be staying with my sister for a couple days at least. I don't think I will be able to type for a couple days. It's not the lumpectomy that will be a problem but the lymph nodes and how many they might have to take out. So I will be back as soon as I can and talk about what they find and how they rate it etc. I'm sure I will need to talk about it. Here we go folks. See yeah.

Rebounding of posting and wonderful women

I found out that I have to be a little careful about what I post or how it might effect me later I guess.

Yesterday's post got me really upset.

I didn't realize it at first though. I finished it and went to take a shower. I was starting to get upset by then. Then I got into the shower and suddenly the tears began. Then I was not only crying I was crying out loud. There is a difference and a big one for me.

I live alone and yet I couldn't just let my guard down until I was in the shower and really all alone I guess. I just stood there and started crying and crying. I was so upset.

I was upset that I had to be sick again. That is the biggest part for me right now. The past 4 to 5 years have been the best for me ever. I have been the healthiest and most active. I have been active in clubs and I even started a bread making club. I have already helped that club to keep going with out my facilitating it's meetings. I've already done that! I had to because I knew I could not be counted on to be there every single time. I already had a horrible time trying to be there for the meetings because of so many Dr.'s appointments. I'm going to try and be there sometimes still, but I can't be accountable any more for a very long time. I'm sick again. I already KNOW what that means. I know too, too well.

I was looking at myself in the mirror getting ready for the shower and I was upset because my boyfriend wasn't here to help me through this. I was talking to the mirror at myself. To my dead boyfriend. Even to a long ago dead boyfriend. They both have died from cancer.

I was mad at them.

"Where are you know when I need you? You're dead, that's where you are."

I could hear myself and it sounded silly but I kept talking because I needed to talk to him even though he was dead... and I was mad. And I needed him. I need him. It's been over two years since he died and I still need him.

"I gave you so much support for a very long time. I gave you all the support you needed. Where are you now when I need you?"

I need boyfriend support or lover's support even though I have SO much support otherwise. I don't understand that.

I need someone to be able to talk to everyday I think and I guess that's why I'm here.

I got out of the shower and decided I wasn't going to hang around here. I had to get the hell out of dodge.

I jumped into the car and I was going shopping and I was going to buy anything I wanted. I really was. That would make me feel better I was sure of it.



I first went to drop off a CD to my friend, Marie. She has had breast cancer a couple years ago and she has been great support for me. She is a very good friend and one of my "sister friends."

I haven't talked about this group yet, but they are wonderful. I have a group of friends that I hang out with every Friday (I try never to make Dr.s appointments on Fridays). We do a mild hiking in the parks around here and the "Emerald Necklace" parks too. Then we eat lunch that we pack and then play a special kind of dominoes. It's just wonderful. In the winter we love all this so much and meeting that we decided we would keep meeting inside and play dominoes and have lunch and then play some more.

We nicknamed ourselves the "Domino Dogs". I love it. We are a little vicous when we play. Only cause we are such good, good friends.

From this group, four women have become so special to me. We have become such good friends and it means so much to me. I know I will be talking about them much more. We get together so many times during the week we really are almost like sisters.

We use to always go to exercise class together twice a week, but a few of us have some injuries now, so we don't always get together that way anymore. But we always have lunch together on Thursday.Just us five and sometimes another woman we are good friends with. If I only see them twice a week it seems very strange.

Their support for me now is so important to me I can't even put it into words. I am so glad that I have them in my life. We laugh so much. We tell each other anything we want. We say things that you can't say to other people. We talk about anything and everything... and then we laugh. We laugh every where we go and about everything we do. I love all the laughter. We got kicked out of pinochle for laughing too much. We didn't care because if you can't laugh we didn't want to be there.

We laugh about my cancer and all of it. I can and have cried with them so many times already. Then we laugh. It's great. It's so great. It's the best thing for me. I love them all so much. They keep wanting to know exactly when I'm going into surgery and for my sister to call one of them to let them know when I get out. They are great.

I ended up talking to Marie again and crying and laughing just when all I was going to do was drop off the CD. She helped me a lot.


So on my way to the mall I called my real sister and asked if she wanted to lunch with me. We worked out a time.

I got to park right near the mall so close I thought this has to be a good day. It turned out to be a very good and very interesting day. I will try to make it short. I know my posts are too long so far, but I don't think they will be in the very near future. I just know they will get much shorter soon. I want them to be shorter anyway. Who has time to read all this?

But anyway I went to Coldwater Creek. My favorite store to dream in. I love a lot of their clothes but never hardly ever buy from them because they are just way too expensive for me.
But I was shopping today. :) I had at least two hours to shop til my sister got there so I was going to have fun.

I spent over two hours in that store. Can you believe that!

They had some sales going on like so many stores now. The sales people were very nice, maybe too nice. They kept bringing in more and more clothes for me. I mean more and more.

I learned for the first time in my life, at 57, that you can buy blouses in petite. I never knew that. All this time. That is what I have needed all my life but I didn't know I could get it.

I put on a beautiful blouse and it fits me all over except I have no arms or more accurately, I have no hands at all. I just stand there and there are sleeves hanging down by my sides with no hands on them.

I said just dreaming and talking like I do SO much, "I wish they made these in petite".

She said, "They do!".

She ran and got it for me in petite and of course I had to buy the first blouse that had fit me correctly in my life!

It's a beautiful white blouse that you never have to iron. I had seen it on the woman behind the counter and I told her I loved it but I would never buy anything like that cause I won't ever iron it. She said," I've never ironed this and I've had it for three years. It's no iron.".

You should have seen my eyes pop out. It wasn't one of those from way back in the 80's no iron. It was gorgeous. I wanted one. Oh well, it was $70. Not for me.

But I never forgot it. I couldn't stop thinking about. So when I went shopping, there it was again and I had a COUPON. A COUPON! Those beautiful coupons. So I bought it. I also bought a beautiful black vest that was on sale. I have this thing for vests. I don't know why. I love them on men too.

My sister came and we had lunch and then she had wanted to buy bras for at least the last three times we were shopping together so I said lets go look, I don't mind one bit. So we went to Dillards because they fit you and talk to you and actually help you get the right bra and right fit.

Well.....while she was in there getting fitted I couldn't keep my mouth shut of course, I start talking to the other clerk. We were chatting and then I started talking about me. I was nervous and I just needed to talk. I'm a real talker actually and I'm not hiding what it going on with me right now.

I asked, " Since you do so many fittings and everything, maybe you know about breast cancer surgeries and fitting bras and stuff."

"Oh yes I do, but Suzanne, knows much more on a personal level." She was the woman with my sister.

"You mean with fitting women or do you mean personally for herself with breast cancer?" I didn't know how much I should ask or what I should say. I had a feeling I was going to find out more about breast cancer.

"Yes, herself. She can tell you a lot. So you have it? When did you have surgery?"

"I'm having surgery Thursday. I still have lots of questions and a long way to go. I didn't even know if I would be wearing a bra after radiation because I have heard it bothers the skin so much."

"Oh you absolutely need to talk to Sue, she can tell you so much. "


I was scared to talk to her. I was nervous about it. I wasn't sure why, but I was.

When I saw her, she wore a little necklace with the pink ribbon on it. Would I ever do something like that?

I let her finish with my sister and then I asked, " Your associate said that you have had some experience with breast cancer. I was wondering..."

She was nodding her head and she took me by the arms and walked me away from everyone. Her eyes were looking right into me. I couldn't help it, I start welling up right away. She was so personal in an instant. I had hardly said a word. I was just going to talk about bras, about when I came back. I'm crying now again just remember it.

She was so kind and sweet beyond belief. She talked about herself and asked about me. I told her I was having surgery in two days. She spent a half hour talking to me for sure. She kept sliding me over to places where there were no people. She answered some more of my questions. She told me about a support group at Southwest Hospital that is so close to me. It is just for breast cancer too. Not one of three Dr.s and nurses had told me about this place. She told me about using a camisole with a shelf in it instead of a bra after radiation because the skin gets so sensitive. She told me to use Aloe Vera lotion you can get in any drug store. It's not a cream or anything, just a clear lotion that helps with burns. I remembered using it then as a kid when she said that and then it made so much sense because the radiation gives a slight burn to the skin. She helped me so much.

We hugged many times. She almost cried at a moment and I told her I was going to get her crying because of me. Then unbelievably, she gave me her cell phone number. She told me to call her any time just for support or to answer any questions. I was shocked. I still am. I just might use it. She told me to come back some time just to let her know how I'm doing and I will for sure do that. She got cancer a second time. I've heard that before. It is a tough hard road. Damn. I think cancer and damn should always go together. I just do. I can't see any part of it being anything less than the feeling of just,damn.

I have cancer damn it

Well the surgery is Thursday and this is Tuesday. I'm getting more and more nervous and cranky and emotional and just all kinds of things. Very sentimental too for some strange reason.

I'm not scared of the surgery, not really. Just a little bit. I've had several surgeries. I counted once. Lets see, I can count again I guess.

I had my tonsils out. I was in sixth grade when I finally did that, so I was a bit old and I was very scared for that. My dad told me scary stories thinking it was funny, but I think he regretted that afterwords.

When I went in for surgery they were doing two of us at one time for some very strange reason. My "partner" was thirty something and I know this cause I was listening to the nurses. Adults really talk too much sometimes.

Well this woman went freaking nuts in the operating room. She was wheeled into the room after me and she suddenly decided she was having nothing to do with it and she was climbing off the table and screaming and throwing her arms around and going totally bonkers.

All these people were around her trying to get her back on the table and the Dr. said,

"Get her under fast before she freaks out this other patient. We'll do her first."

Well, yeah, I was wondering what she knew that I didn't. I was beginning to wonder if I had better get the hell out of there too.

Too late, they had my arm tied down and they were putting me out too. They told me to count to ten and I didn't get to two.

So that was one. lol.

Two was many years later when I had an hysterectomy.

That one didn't go quite as expected and they only took one ovary and I only learned many years later she didn't take any of the ovarian tubes, but she did take the uterus.

My sister came out from Ohio to stay with me in S.F. and I didn't even ask her too. That was really nice to say the least. I got an infection after words that I would not have realized if she hadn't been there. I didn't know at all that I had a fever but she knew right away.

Three was years later when I had tons of pain in my back at first. I thought it was the herniated disks again. (I was really put out by two herniated disks for a couple years to say the least). But then the pain went to the front. It got worse really fast. I'm talking days or even hours. I ended up going to emergency room. They couldn't figure it out.

They only thing they could find was an enlargement of my overy. Well I said I didn't have an ovary there, only on the other side. They told me I was wrong. I told them they were wrong. No I was wrong.

They wouldn't believe me. The patient is always wrong, what do they know.

Besides, "That wouldn't cause this much pain." they told me.

They decided to admit me and "watch me".

Well I had played that game before. To hell with that. The pain was getting worse and worse and I knew I didn't have an ovary there.

If you leave the hospital on your own knowing what is best for you, then they say you left ADA. That means Against Dr.s Adice. This turns out to be a very bad thing on your file. I learned that from some other people. When you're sick a lot you learn a lot of things.

So, I played the game for a day while they "watched me".

I pretended to eat my food because you have to eat to get out of the hospital. I stuffed the food in the milk carton and gave away food to people in the room and the neighbor etc. When the nurse came to check...I had eaten and I liked it all. I said I felt fine and the pain was a little less. Things like that. I did not complain about anything. I got out the next day and I was in so much pain I could hardly walk. They would not let me even have an appointment with an OB so I knew I had to get out of there. My primary Dr at that time wasn't coming in to see me so I knew I had to take care of myself. Unfortunately that really happens sometime and if the patient is too sick to do that and has no one to do it for them....it's damn scary.

The day I got out I went directly to my OB and told the nurse I had come straight from the hospital and the whole story. They were a bit shocked and I got to see my Dr. right away. He had me get a cat scan and he said the "cyst" had already grown considerably since the emergency room (I don't remember how much now) and that I needed surgery right away. He told me that I had a large cyst in the ovarian tube that had been left after my hysterectomy. Two days after getting myself out of the hospital I was having surgery.

Number Four was Leg Nerve Decompression. This was actually Four and Five. I had to have that done on both legs.

I had gone to the podiatrist thinking that something was wrong with the bottom of my foot. I had gone a couple months earlier thinking I had broken a little bone or something. I had an x-ray and it showed nothing. That Dr. was sure something was broken too, because of the pain.

Well this Dr. examined me and right off he said,

" You have to have surgery. You have very serious nerve damage and it could cause drop foot . You have to go see Dr. so and so."

He had barely examined me and right off he says you have to have surgery. This was very very shortly after the cysts ordeal.

I burst out into tears. I was angry and yelling at him. I was shocked and couldn't control my behavior and most of all I couldn't stop it. I was really yelling at him. I was really crying too. I couldn't stop any of it. I was so fed up with Dr.s and hospitals and now he was so casually telling me to do it all again right away.

Between the tears I was yelling,

" You just casually tell me with no care in the world that I have to go and have surgery on both of my feet and then you start to walk out of the room!"

" You just wait. I haven't even said anything. I haven't told you anything. You just want me to walk out of here and just go out and I 'll have surgery on both of my feet! I don't even know you for one thing. This is the first time I've even seen you!" I was shouting and crying and very angry. I didn't like his behavior or mine.

He turned around and stood in front of me and then we had a conversation through my crying and sniffling.

It was horrible on my part and I had no ideal what I was in for.

I did go to the other Dr. who turned out to be quite famous. Dr. Sieminouw. I have to look up her real spelling. She has done the first full face replacement. Another Dr did a partial and when I saw that, it really was only part of a chin and nose. Dr. S. has now, years after my surgery, has now done a full face replacement.

She does this especially for burn victims and such. She was talking to me about it when I was interviewing her for my surgery. She was very impressive. Then I saw her months later on the international news. wow.

Anyway, I had to have three incisions on both legs to do this and she released pressure on a nerve that runs down the leg from the knee to the foot. It did work to an extent but I still have terrible pain in my feet which is neurapathy and they believe after very extensive testing that it is from both diabetes and Lupus.

Six was from what was to be a very simple gallbladder surgery.

A one day surgery, in and out. They poke a couple holes in you, remove it and then wake you up and you go home. Well you guessed it. Not me.

To this day I don't know what happened or what went wrong but something did. Something very bad went wrong and I'm not sure they know totally.

I don't remember ever really waking up. I was in so much pain I couldn't really answer questions they asked me. I remember trying to sleep but that was very painful. I do remember nurses asking me really stupid questions in the night that were annoying me terribly. I was really in a lot of pain. I just couldn't wake up for some reason. I think it was because of the pain, but I'm not sure. I remember the nurses kept saying that I had a high fever and I knew that couldn't be right.

By morning the Dr. was there again and he was really angry they hadn't called him and my sister was there too.I still only heard bits and pieces. As I said earlier, I was too sick to even talk much less make any decisions so I was so glad my sister was doing it all. She took care of every thing.

They were moving me to the main hospital. I ended up there for a week. I was bleeding internally and I could see it when I peed, but they weren't telling me or my sister anything. They just wouldn't tell me anything even when I started asking. I found out much later that I got released the day I finally began to stop bleeding and they were just about to do surgery again to find out what was wrong. They hadn't told me any of this. I was still bleeding but it was finally getting less.

Seven was surgery for the gallbladder again a few months later because I still was having so much pain.

It was just awful. I don't know what went wrong but something sure did. They couldn't find anything "of significance" . It took nearly a year before it really felt better. I told my Dr. I called it my phantom gallbladder. He laughed but then told there really is such a term. He said that sometimes it happens for some reason but that it would eventually go away. Sure enough now after about 2 or 3 years it has pretty much gone away. Only once in a very blue moon I feel a pain but it goes right away.


a big sigh.

I just don't want to do this. I have been sick a lot. You can tell. I have gone through a lot. I wrote all that just so you get an idea of what my life has kind of been like. I left out tons. Months of being in bed over time.

So now I have this thing about the bed. I have already bought a new cover for my bed. It makes it cheery and fresh. It's red and white...mostly white for a change. I bought a new skirt to go with it too. I even ironed it and starched it....you have no idea how big a deal that is. lol. It's very pretty now. It has matching pillow things...those big pillows that go with the covers that you never use for anything but to put on the bed and the floor. Drives me crazy but I do it now.

So my bed is ready for me to do some recovery time in it . ug.

I hope not to be doing much of that. But if I do, I want it nice and fresh and pleasing. When I laid there doing recovery from the gallbladder I thought I would never get out of that bed. As soon as I could I bought a new mattress and paid for that forever, but now I love that. So that's what I do now when I know I might spend time in bed.

So now number eight will be breast cancer. A tumor. A tumor in my left breast. Because I have cancer.


I have cancer. I have cancer. I have to keep telling myself that. I don't feel it. I'm just not feeling it. I know I have a lump. A tumor. I want that out. But cancer? I don't feel it. I don't want it for sure. How does it feel to have cancer? I guess I'm going to know after the surgery and that's what I'm afraid of. I don't want the surgery because then that means I have cancer then. Then I will have to start radiation after healing from the surgery and then I will have to have chemo and then maybe even radiation again from what I've read. I dont' even know any of that. They wont tell me.

"Surgery is the first step and then we will tell you the rest but we already know you have to have radiation and chemo." Why do they do that? It's always if this and if that. We will do surgery and then hand you over to a team of other people and they will decide everything else for you. It's already all out of my hands. Even information wise.

Then I will be a cancer patient. Then I will know all kinds of terminology. I will be speaking the speak. I'll use acronyms and even know what they mean. I already know that bc means breast cancer. I didn't know that. dah. There are tons, tons more. I went to a discussion board and it was so filled with acronyms I couldn't understand half of it. What the hell. I don't want to be one of those people. I just don't.

Damn. I don't want to be a cancer person. I don't want to be a cancer patient. A cancer victim. I don't want to be a cancer survivor. Yuk. I hear that all the time and I don't want to be labeled that way. I don't want all these labels. I don't want to be brave. I don't want to be a survivor. I don't even want to be a patient.

I've been a patient long enough. My whole life in fact. Starting as far back as I can remember. When I was in preschool my friends would help hide me from the school nurse.

Getting off the bus and to the classroom, the school nurse would pick me out of the moving crowd and haul me into the office and tell me I looked too sick to go to class. Because mom's back then didn't have cars like they do now, I would have to stay in the nurse's office all day.

So my friends started helping me hide from her to get from the bus to classroom and then I was ok. I remember that so well and I was only in preschool.

So here I go again. I have to. I can't hide. I just can't hide. Damn it.

I am a cancer person. yuck. I have to think about some way to say that. I can't say survivor cause I can't say that for FIVE freaking years. damn.

Telling Family

Telling others has been very hard. Who do I tell when and how for heavens sake. How private or public was I going to be with this. I had to think this out. I've been having a hard time thinking anything out to be honest with you. I really have. I've thought I have been really ok and thinking just fine only to find out from others that I have not been on the top of my game. I don't like that and wonder what is going on already. I just mean mentally. Is this all bothering me so much that I'm foggier than I realize. Apparently so.
I didn't have to tell my sister because she went with me to the appointment so she knew before I got to the car. I was very glad of that. I needed that strength to join with mine. It helped a lot. Her love and strength helped me a lot those mins and hours.

We were to go to my mothers then. Do I tell her then or not? Tell her at all? She is 87 and not very understanding of illnesses. She just doesn't understand how they work for some reason. My sister has thyroid disease and takes medicine for the rest of her life for hypothyroidism. My mother kept thinking for several years that it was going to go away. She thought she didn't really need to take those pills, "people take too many pills, they make them sick." I told her over and over, "She will die if she stops taking them." She just didn't get it.

My mother does not take pills, lucky her. When she does need to take medicine it's like trying to get a cat to take a pill...no it's worse. Much worse. She's never needed to take any pills til last year. Eighty-six years never needing medicine so "what wrong with everyone else?".

We went over and she was not up to par. She just felt old and not too happy about it. I shook my head at my sister and gave the finger across the neck. Nope, not today, I couldn't tell her today. She wouldn't understand anyway and if she did she would get sick over it. We sat and talked and my mom went for something, leaving us for a moment.

"You have to tell her. We are both here and that's the best way and there is always going to be some reason not to tell her. Tell her today and get it over with.", my sister was whispering across the table to me.

I really was glad my sister was with me. I needed her for my support. You would have to know my mom. My dad had died many years ago. I wouldn't have to tell him at least.

We went out to the deck and sat in the beautiful days left as the leaves were falling, getting close to being gone even. But this day was really nice. I sat next to mom and Lyn was across from us.
After mom talked some I decided it would be good to get it over with. Just say it gently and be kind of vague and not say anymore than I needed to. Be careful and gentle. I wouldn't even tell her if she didn't live right here. But she would see me. We saw each other all the time. There was no escaping it.

It was months ago now. I don't remember the very exact thing I said to her. I do remember exactly what she said to me. Wouldn't you know.

I told her that I had the mammo today. She knew that I did but not the exacts of it or she pretended that she didn't know. I never know about her. I told her that there was a lump and that they did biopsies and that now I was going to have to wait for lab work on it. I told her I had found the lump etc and that I would be talking to a surgeon because my primary Dr. wanted me to.

I thought I would go slow and let her absorb things slowly. Go at her pace and just answer things she wanted to know about. Not just dump everything on her at once. That was another reason I wanted to start then rather than wait and just say, hey I have cancer etc. But it didn't quite work that way. The best laid plans as they say.

She wouldn't let me talk. I didn't get very far. She got very angry. Her face got red and she wouldn't look at me at first. She started to talk about herself.

She had had breast cancer when she was younger. THIS WAS THE FIRST I HAD HEARD ANY OF THIS.

I turned to her and said, wait.. WHAT, etc.

This is very important. They had asked me a dozen times, any cancer in your family, any breast cancer and I had said no every time!

She turned to me with her hand in the air, her finger shaking at me and told me, " now you shut up and listen to me!" "It's my turn to talk.". I had barely said a thing yet.

I looked at my sister and rolled my eyes and put my hands up. I couldn't believe this. My mother was furious. She was having a very, very strange reaction. I knew it was fear, but come on.

She then went on to tell me this very strange story, that she had been told that she had an x-ray done and they told her that there was a lump and that she had cancer. She told the Dr. to show her the x-ray.
He held it up for her to see and she told him, "that's not cancer, there's no fuzzy edges and it's not big enough. I don't have cancer."
The Dr. asked her if she was a Dr. and she said no, but she knew she didn't have cancer so he said ok and let her go home.

What the hell??

I looked at my sister just to make sure I wasn't dreaming or in some kind of hell. She was getting pretty angry too.

I turned to my mother again and I tried to say I hadn't heard any story like this ever in my life. She was still very angry and said,
"well I didn't have cancer. Have you seen your x-ray, how do you know you have cancer?"

I looked at my sister again. I think I had that look like, help.

My sister looked at my mom and said,"she doesn't need this right now Mom"
and my Mom said,
"Well I don't either!"

We both looked at each other and we knew she was just so up set she didn't know how to handle any of it and anger was her only way. She was shaking and red and almost in tears.

I tried to calm her down and reassure her and bring her back around. I told her that nothing said I had cancer yet for sure. There were many more tests to be done. She needed more time to absorb all this. All of us did. I still do.

Just recently my sister was talking to her, a few weeks ago, and she didn't seem to be getting the whole picture yet. Really in denial. We have been trying to slowly bring her around to the fact that I have to have surgery, radiation and chemo. That I do in fact have cancer and there is no mistake. She told my sister not to use that word. She doesn't like to say cancer because it sounds too nasty. My sister told her to get use to it. lol. It's hard. It's hard for every one. Most of all family.

My older sister started to act as if I was going to die. I didn't like that one bit. She lives in CA in San Jose. I use to live in S. F. Now I live in Ohio.

So we were on the phone and she started the moaning,
"ohhh, ohhh, ohhhh Vaaaal."

Over and over.

I just butted right in and told her,
" Stop it. Stop it right now. I won't put up with that. None of that. I have a very long road ahead of me and I can't have any of that."

I told her that her job was to be happy and act just like all the rest of the times. If she couldn't do that, we couldn't' talk. I was very direct with her. She did stop right then and there. She has been very good every since.

My youngest sister Lyn, has been fantastic. We have had a few little spits here and there. Especially when I was trying to decide between a lumpectomy and mastectomy. That may have been the hardest thing I have ever done. I changed my mind over 500 times and I'm not exaggerating. Perhaps my next post will be about that. It really was the first thing I had to do after talking to the surgeon. It felt like the first thing I had to do altogether really. I had to decide as soon as I could....what a horrible thing. That's how I felt.

The Dr. who had decades of education just looked at me and said, "You get to have a choice. It's great. You get to decide. Now come back as soon as you can with your choice so we can get started. Bye". Effectively, that was what happened.

I had NO, NONE, ZERO, NADA, NOTHING, yeah NO education about anything. Now I had to make a HUGE decision about my body, health , well being and mental wellness that I had to live with for ever, in a week or two.

I hated her.

And my sister could not understand that.

How could she not understand that.

I still rethink it sometimes and surgery is this coming Thursday. I think there is a little part of me that is afraid to post about that process til maybe after surgery because maybe I'll start rethinking it again. I don't want to start second guessing it again. I think I'll wait til after surgery for that post. Sorry about that. I have to take care of myself first all the time now. You wouldn't believe some of the things I do now. I don't have the patience for some things already. I've already started to change and I haven't even had surgery yet. It's amazing.

I fired my therapist. He keeps double booking clients and then he can't see one or the other. He did it again last Thursday. I have talked to him about it before. Even if I'm the one to have the appointment I feel bad for the other person. Our time is important. He is important. We need to talk to him or we wouldn't do it. It's money, time and emotions.

This time we were to share the appointment. Half hour each. I told him I really needed the appointment. First time since I found out I had cancer. I needed it. I had to cancel several appointments because of that dreadful virus I'm still fighting the tail end of.

I told him I needed to be able to count on people especially my therapist. I told him it was over. I had to look out for myself. I didn't care how bad he felt. It didn't help me. He kept saying how bad he felt. I just wanted to never see his face again. I was counting on that appointment. I needed to talk. I needed to be heard. I needed him to be there for me. He wasn't at all. I needed his support. I was scared, frightened and very confused. I needed someone to be there just for me. For me. I damn sure wasn't going to spend three mins making him feel better about anything.
Fifteen mins I was out of there and I felt so good about it.

It's all about me now. I have to take care of myself. It doesn't matter who it is. Family, friends, Dr.s or strangers. I come first from now on. I never have before. This is going to be quit a journey.