It is past 3:00 AM and I can't sleep.
But I just came across this article that I liked, so I am linking it here:
http://well.blogs.nytimes.com/2010/03/15/with-cancer-lets-face-it-words-are-inadequate/%22
The author wrote about that cancer verbiage; battle, survivor, brave, etc.
This article moved me since I have had these discussions with my friends and family. My daughter hates the term 'survivor' as she doesn't want to think of the alternative. But a 'survivor' friend of mine refers to herself as such quite readily. A patient of mine asked if I was a cancer survivor and I answered "So far". In my opinion, the only was I can say I survived cancer is when I die of something else. Maybe I just feel that was since I am still toting around cancer. We are co-existing.
I also don't love 'brave'. I don't feel brave, I just show up. The alternative is to hide in the closet and that wouldn't be a good idea.
I don't want my obituary to say 'lost battle with cancer'. If it gets me, I hope it is not because it beat me, I just chose to find a new roommate. Maybe 'chose' is not the right word, but if this disease progresses, than this real estate that is my body may become inhabitable. So my 'leaving' this real estate would be seen as a good thing. Maybe I should have "Movin' On Up" from The Jeffersons played at my memorial service.
Well we're movin on up,
To the east side.
To a deluxe apartment in the sky.
Movin on up,
To the east side.
We finally got a piece of the pie
Wednesday, March 17, 2010
Sunday, March 14, 2010
3-14-10
There is an experience that I had in the hospital that keeps coming up in my mind. I figure it needs some more processing, so I will process.
It was the morning after the mastectomy. The previous evening, I had apparently talked to a friend (I have no recollection of this) and told her that my "armpit was not massacred so I must be OK". That morning, the surgeon came in, reported that my lymph node biopsy was positive and that chemo was in my future. As I recall, I became very aggitated, went to the nurses station and started asking (demanding) that I be discharged. I was due to go home that day, but I wanted out now. I remember saying "I am NOT OK and no one can help me". I just hear myself saying that over and over.
I was so hopeful that the surgery would remove the tumor and it would be a done deal. I realize now how silly that sounds, but that was my plan. Somehow I had convinced myself that the radical surgery was going to fix my problem. They had discussed chemo before surgery to shrink the tumor and have less drastic surgery, but I declined and opted for the mastectomy.
So when I was informed that I still had cancer... I was not OK and no one could help me.
I have had a good dose of chemo and I still have cancer. I don't know if I am OK and I don't know who can help me. After this round of chemo is done, I will get another scan to see if I still have cancer. There is something in my brain that can deal with chemo to prevent stray cancer cells from setting up housekeeping that is different from knowing there is a visible mass still in there that we are measuring and killing, damn squatters.
So anyway, in a PTSD kinda thing, I hear my voice telling those nurses to let me out since I am not OK and no one can help me. I hear it a lot. I don't like it.
Maybe hypnosis can remove that memory. Maybe that voice is serving a purpose. Maybe I need therapy.
It was the morning after the mastectomy. The previous evening, I had apparently talked to a friend (I have no recollection of this) and told her that my "armpit was not massacred so I must be OK". That morning, the surgeon came in, reported that my lymph node biopsy was positive and that chemo was in my future. As I recall, I became very aggitated, went to the nurses station and started asking (demanding) that I be discharged. I was due to go home that day, but I wanted out now. I remember saying "I am NOT OK and no one can help me". I just hear myself saying that over and over.
I was so hopeful that the surgery would remove the tumor and it would be a done deal. I realize now how silly that sounds, but that was my plan. Somehow I had convinced myself that the radical surgery was going to fix my problem. They had discussed chemo before surgery to shrink the tumor and have less drastic surgery, but I declined and opted for the mastectomy.
So when I was informed that I still had cancer... I was not OK and no one could help me.
I have had a good dose of chemo and I still have cancer. I don't know if I am OK and I don't know who can help me. After this round of chemo is done, I will get another scan to see if I still have cancer. There is something in my brain that can deal with chemo to prevent stray cancer cells from setting up housekeeping that is different from knowing there is a visible mass still in there that we are measuring and killing, damn squatters.
So anyway, in a PTSD kinda thing, I hear my voice telling those nurses to let me out since I am not OK and no one can help me. I hear it a lot. I don't like it.
Maybe hypnosis can remove that memory. Maybe that voice is serving a purpose. Maybe I need therapy.
Saturday, March 13, 2010
03-13-10
Couple of things...
First-Damn that was a good burger I just ate. Not much tastes good these days, but that hit the spot.
Second-I have been dealing with a stomach bug and an eyeball problem this week. Stomach bug has been going around, kids had it, I got it, no big deal. But when my eyeball needed to be pulled out of my head, I couldn't drive, I couldn't see. So I had to carefully consider who my friends were. Who would be willing to take me to the doctor when I might possibly shit in their car?? I was on the toilet every 10 minutes for hours and I needed to go the doctor about my eye. Who can you call in that situation?
Turns out I do have good friends and I didn't shit in their car, but it means a lot that they were willing to chance it.
I did have a corneal abrasion and some other kind of trauma to my eye. So I added another lovely feature to being bald and boobless, swollen and blind. The doc put yellow dye in my eye and it ran out of my nose, damn I am sexy now!
Here is my deep thoughts about cancer today. You cannot be indifferent after cancer. There were people in my life before that were kinda on the fence. You do learn who your friends are. Those who are good, get better. Those who sucked, get worse. It is an interesting magnifying glass that I can see with now (out of my one eye that is not swollen and leaking yellow crap).
Unrelated, I had to get my yearly auto exam thing to get my license plate renewed. The car passed and the guy said "See you next year!". I thought, the chances of me and my car being around next year are not that great (the car is a 1992 model). I just thought it sad that I don't make those assumptions anymore, and I wiped yellow snot from my weepy nose.
I also realized that cancer took my boob but growing big brass balls must be a side effect of chemo, I think that is an OK trade.
First-Damn that was a good burger I just ate. Not much tastes good these days, but that hit the spot.
Second-I have been dealing with a stomach bug and an eyeball problem this week. Stomach bug has been going around, kids had it, I got it, no big deal. But when my eyeball needed to be pulled out of my head, I couldn't drive, I couldn't see. So I had to carefully consider who my friends were. Who would be willing to take me to the doctor when I might possibly shit in their car?? I was on the toilet every 10 minutes for hours and I needed to go the doctor about my eye. Who can you call in that situation?
Turns out I do have good friends and I didn't shit in their car, but it means a lot that they were willing to chance it.
I did have a corneal abrasion and some other kind of trauma to my eye. So I added another lovely feature to being bald and boobless, swollen and blind. The doc put yellow dye in my eye and it ran out of my nose, damn I am sexy now!
Here is my deep thoughts about cancer today. You cannot be indifferent after cancer. There were people in my life before that were kinda on the fence. You do learn who your friends are. Those who are good, get better. Those who sucked, get worse. It is an interesting magnifying glass that I can see with now (out of my one eye that is not swollen and leaking yellow crap).
Unrelated, I had to get my yearly auto exam thing to get my license plate renewed. The car passed and the guy said "See you next year!". I thought, the chances of me and my car being around next year are not that great (the car is a 1992 model). I just thought it sad that I don't make those assumptions anymore, and I wiped yellow snot from my weepy nose.
I also realized that cancer took my boob but growing big brass balls must be a side effect of chemo, I think that is an OK trade.
Sunday, March 7, 2010
2-7-10
This is just pitiful. My 10yo DD and I are watching the Academy Awards (she is rooting for Avatar). I keep having hot flashes (from chemo induced menopause...chemopause). Everytime I have one, I tell her and she keeps her hand on my head and is awe as she can feel it heating up.
We need to get out more.
We need to get out more.
2-7-10
I don't think I have ever been this tired for this long in my whole life. I have a level of fatigue that doesn't respond to rest. Of course, I don't think I have slept through the night in at least two weeks. I am whiny.
Saturday, March 6, 2010
3-6-10
I think I am starting to get very burned out on this Cancer business. I have done my third of twelve weekly new chemos. Weekly chemo sucks, no break. Even if the side effects are not as bad, there is just no "good" period. Plus, the oncologist office calls me every Friday wih an automated voice message reminding me of my appointment.
For some reason, this almost always brings tears to my eyes. Friday night is when I am getting ready to "play normal" and go to work for the weekend and pretend everything is OK. The kids are gone so I don't have to feel guilty if I nap or don't cook. I hate being called every Friday night to be reminded of this crap, I get it, I am not going to forget.
Went to the prothesis store this week looking for a mastectomy bra that looks less matronly, no dice. We were discussing the lack of attractive bras and the sales woman asked if I was married or not. I found this interesting and asked her "Who needs sexy bras more, married woman or single woman?" She answered "married woman" and then admitted that it made no sense. Having been married and sales woman being currently married, we acknowledged that husbands don't really care about bras.
And I am not even going to start on husbands and what they feel about what is under bras, I am still boobed out. It is ass cheeks all the way.
I did do something positive. I made an appointment to meet with the breast cancer chick at the local YMCA. She will advise me in an exercise program and lymphadema info and nutrition guidance. I am looking forward to this as my ass is getting big enough I will have enough to keep two ass men happy.
An interesting thing happened this week. I had two very different conversations with two friends. With #1, he was asking me if I still worry about dying and I shared the stats with him (which are not all rosy and unicorny). He said he could relate to my worrying about surviving to my children's adulthood. He recently had a physical and although everything came out perfectly, he could understand my fear.
Now, I love this friend, I know he is having a hard time wrapping his brain around my cancer. But I don't get how your great physical gives you insight into my cancer thinking.
But then, on the flip side, #2 friend had a sinus infection but stated that he couldn't complain to me about how he was feeling since I have cancer.
Hmmm, I don't like that either. Sinus infections suck, he feels worse that I do. Yeah, you can complain about how crappy you feel. I don't want to be a cancer bitch who has lost all compassion for everyone who is "healthy". That is not who I am. Personally, I think that living with the fear of the unknown is a hell of a lot scarier than post diagnoses. Before D-Day, I worried about what might happen. It scared me. Well, IT has happened and I am OK. I hate that my family has fear of being diagnosed. I hate that my friends worry about developing some life altering condition. Been there, done that, it sucks and I don't wish it on anyone.
My 10yo daughter was reading some Cancer magazine that got left in the car. She asked me if I was mad about getting cancer. I am not, there is no reason why I shouldn't have it. Someone has to get it, why not me? I never said "why me?". My daughter made me happy, she told me that I was not a wimp and I could handle it.
That being said, I am pissed that my kids have to deal with this. It isn't fair to them. But fair schmair, I have to believe that this experience will serve them in their future.
I don't know if any of this made much sense. Like I said, I am a little burned out.
For some reason, this almost always brings tears to my eyes. Friday night is when I am getting ready to "play normal" and go to work for the weekend and pretend everything is OK. The kids are gone so I don't have to feel guilty if I nap or don't cook. I hate being called every Friday night to be reminded of this crap, I get it, I am not going to forget.
Went to the prothesis store this week looking for a mastectomy bra that looks less matronly, no dice. We were discussing the lack of attractive bras and the sales woman asked if I was married or not. I found this interesting and asked her "Who needs sexy bras more, married woman or single woman?" She answered "married woman" and then admitted that it made no sense. Having been married and sales woman being currently married, we acknowledged that husbands don't really care about bras.
And I am not even going to start on husbands and what they feel about what is under bras, I am still boobed out. It is ass cheeks all the way.
I did do something positive. I made an appointment to meet with the breast cancer chick at the local YMCA. She will advise me in an exercise program and lymphadema info and nutrition guidance. I am looking forward to this as my ass is getting big enough I will have enough to keep two ass men happy.
An interesting thing happened this week. I had two very different conversations with two friends. With #1, he was asking me if I still worry about dying and I shared the stats with him (which are not all rosy and unicorny). He said he could relate to my worrying about surviving to my children's adulthood. He recently had a physical and although everything came out perfectly, he could understand my fear.
Now, I love this friend, I know he is having a hard time wrapping his brain around my cancer. But I don't get how your great physical gives you insight into my cancer thinking.
But then, on the flip side, #2 friend had a sinus infection but stated that he couldn't complain to me about how he was feeling since I have cancer.
Hmmm, I don't like that either. Sinus infections suck, he feels worse that I do. Yeah, you can complain about how crappy you feel. I don't want to be a cancer bitch who has lost all compassion for everyone who is "healthy". That is not who I am. Personally, I think that living with the fear of the unknown is a hell of a lot scarier than post diagnoses. Before D-Day, I worried about what might happen. It scared me. Well, IT has happened and I am OK. I hate that my family has fear of being diagnosed. I hate that my friends worry about developing some life altering condition. Been there, done that, it sucks and I don't wish it on anyone.
My 10yo daughter was reading some Cancer magazine that got left in the car. She asked me if I was mad about getting cancer. I am not, there is no reason why I shouldn't have it. Someone has to get it, why not me? I never said "why me?". My daughter made me happy, she told me that I was not a wimp and I could handle it.
That being said, I am pissed that my kids have to deal with this. It isn't fair to them. But fair schmair, I have to believe that this experience will serve them in their future.
I don't know if any of this made much sense. Like I said, I am a little burned out.
Monday, March 1, 2010
3-1-10
Couple of things going on this morning in my little brain.
First, my sister (from whom I am estranged, hopefully temporarily) sent me an email informing me that the cast of 70's show "Eight is Enough" would be on TV. OK, this should be fun, and sis sent me an email that wasn't scathing! So I am watching the cast, googling trivia on the show, nice walk down memory lane.
But what about the Mom on the show? I didn't even realize she had ever been on the show. Turns out, the actress Diana Hyland played the Mom for four episodes and then pretty much dropped dead of...breast cancer. She was 41 years old. She was working and living and got too sick to continue filming and a few weeks later (maybe months) was dead. Maybe that doesn't qualify as "dropping dead" since she did have a few weeks in between becoming too sick to work and dying. But I keep telling my kids that I won't "drop dead" of breast cancer and that story sounds like cutting it pretty close.
Of course, I mean no disrepect to Ms. Hyland or her family. I had the same reaction when I heard about the lady from "Survivor" that recently died of breast cancer. I just need to believe that I will have plenty of warning if the cancer gets me. Which sounds silly when I think it. No one has warning about being hit by a moving...whatever (fill in the blank). People drop dead of heart attacks, strokes, tramatic brain injuries, impalings, etc, etc. Cancer does not mean that I am entitled to a endearing death bed scene with friends and family surrounding me.
OK, now that I have that in perspective. (The feeling of entitlement is a hot button topic of mine and when I see myself feeling entitled to anything, it smacks me on the nose.)
Second issue, the whole boob thing. Someone in internet land is having reconstruction because her husband had an affair with someone with two boobs. Someone else in internet land was dogging a young woman who had a biltateral mastectomy since she carried the gene and wanted to avoid cancer. He said that she would never find a husband without boobs, blah blah blah.
Since I have still not made a decision about reconstruction, this stuff really drives me nuts. I am sure I have seen way to many pics of boobs lately. Real boobs, lifted boobs, scarred boobs, reconstructed boobs, nipple-less boobs, tattooed boobs, barbie boobs, good boobs, bad boobs, boobs, boobs, boobs. Even the word looks stupid.
I am hoping to meet an "ass man". Or maybe a one-armed man. Surely these boobs cannot be all that important. Maybe I just took them for granted since I had pretty decent boobs for a pretty good while. I love grabbing a handful of cute man ass, but I don't think I would dismiss a man if he had no ass cheek.
Maybe I should spend more time looking at pics of cute man ass, I think I am all boobed out.
First, my sister (from whom I am estranged, hopefully temporarily) sent me an email informing me that the cast of 70's show "Eight is Enough" would be on TV. OK, this should be fun, and sis sent me an email that wasn't scathing! So I am watching the cast, googling trivia on the show, nice walk down memory lane.
But what about the Mom on the show? I didn't even realize she had ever been on the show. Turns out, the actress Diana Hyland played the Mom for four episodes and then pretty much dropped dead of...breast cancer. She was 41 years old. She was working and living and got too sick to continue filming and a few weeks later (maybe months) was dead. Maybe that doesn't qualify as "dropping dead" since she did have a few weeks in between becoming too sick to work and dying. But I keep telling my kids that I won't "drop dead" of breast cancer and that story sounds like cutting it pretty close.
Of course, I mean no disrepect to Ms. Hyland or her family. I had the same reaction when I heard about the lady from "Survivor" that recently died of breast cancer. I just need to believe that I will have plenty of warning if the cancer gets me. Which sounds silly when I think it. No one has warning about being hit by a moving...whatever (fill in the blank). People drop dead of heart attacks, strokes, tramatic brain injuries, impalings, etc, etc. Cancer does not mean that I am entitled to a endearing death bed scene with friends and family surrounding me.
OK, now that I have that in perspective. (The feeling of entitlement is a hot button topic of mine and when I see myself feeling entitled to anything, it smacks me on the nose.)
Second issue, the whole boob thing. Someone in internet land is having reconstruction because her husband had an affair with someone with two boobs. Someone else in internet land was dogging a young woman who had a biltateral mastectomy since she carried the gene and wanted to avoid cancer. He said that she would never find a husband without boobs, blah blah blah.
Since I have still not made a decision about reconstruction, this stuff really drives me nuts. I am sure I have seen way to many pics of boobs lately. Real boobs, lifted boobs, scarred boobs, reconstructed boobs, nipple-less boobs, tattooed boobs, barbie boobs, good boobs, bad boobs, boobs, boobs, boobs. Even the word looks stupid.
I am hoping to meet an "ass man". Or maybe a one-armed man. Surely these boobs cannot be all that important. Maybe I just took them for granted since I had pretty decent boobs for a pretty good while. I love grabbing a handful of cute man ass, but I don't think I would dismiss a man if he had no ass cheek.
Maybe I should spend more time looking at pics of cute man ass, I think I am all boobed out.
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