Saturday, October 31, 2009

everybody knows it ain't trickin if you got itª

Ok, that song("Whatever You Like" by T.I.) is not a halloween song but I like it and it has the word 'trick' in it and I was trying to be more clever than just saying happy halloween! nuff said

Feeling very nostalgic today and have been looking through old photos. This post is a tribute to halloweens past and present. Send me a pic if you want me to add it! Have to say that one of my dw as spock is so cute! Even back then she was a sci-fi geek:)

Also adding a poll just for fun! If we should ever move again, you can put your two cents in, although when it comes down to it, we will have the final say! Trying to limit it to places where we have family and friends.

ª from the song "Whatever You Like" by T.I.

Friday, October 30, 2009

pink musings from a crazy brca chick

Pink october is almost over so I need to jump on the bandwagon real quick and add my two cents. Seems like such a hot topic among all the brca bunch. I'm not really a pink person although my grandma once told me I looked good in pink. Thank god it didn't seem like such a popular color when I grew up. Seems like I grew up wearing blue and my twin wore red. Hmm...maybe that is where mutant 2 first hatched, cuz I wore the boy color!

I only own a couple of pink things. I have a pair of fuzzy fake crocs that I call my dog pee shoes. I wear these to take my dog out for the last piss before bed. Why pink? All the other colors were uglier, believe it or not. My other pink item is so cool! My cancer journal. It is pink and covered in the skull and crossbones. Had to get it the minute I saw it! DW did not like it or find it as humorous as I did. I have to say she does not have much of a sense of humor when it comes to cancer or brca. The journal makes her think of death. I like to think of it as 'fuck cancer' or death to the pink cancer! I never had much luck keeping up with a journal before but I do find myself using this one. I also like looking at this journal because it reminds me of chocolate. I bought it in park city. We like to go to this chocolate shop there that has a book store attached to it, and that's where I got it.

This has been a strange year for us, to say the least. At the beginning of the year we decided we needed something to motivate us at the gym so we decided to start training for a 5k. My brother and sis in law suggested doing the susan komen race for the cure with them in may. So we did it and I ran for my sis in law and my dad. At the time, they were the only ones I was aware of with bc. It was a mob scene. Seemed like everyone in slc was there. When we got close to the finish, you couldn't even move it was just a bottleneck. Afterwards, we checked out the tents and my sis in law collected a bunch of survivor stuff. She survived some nasty stuff, chemo, radiation and all that. Little did I know at the time that I was walking around with cancer in my boob. Flash forward to the fall and we found ourselves at the acs making strides walk. This time I was walking for myself and wore a survivor sash. It was an odd feeling to say the very least. Life can change so quickly.

A lot of bc and brca peeps have opinions on this pink month. They wonder if the message is really getting across. Are non cancer people really getting the message? Do they do their self breast exams? Are they getting their mammograms? Is this really just a big marketing gimmick or is some of that pink money going to actual research? And what about those of us trying to forget about our cancer selves. Hard to ignore when every store you enter has a pink display and some junky bracelet or pink water bottle they are selling for "the cure." That's great but I would like to know where this cure is. I am still holding my breath for the mutant one cure I was promised 24 years ago. Supposed to happen in my lifetime but I'm no spring chicken anymore. Rambling, I know. So I see all this pink stuff in the stores and read the fine print. Some sound pretty good. 100% to research plus matching donation by such and such company. I like those. Then there are the ones that say 100% of net proceeds. Well how much is that really going to be? 50 cents on the dollar or more like 1 cent? And what are they going to do with all the unsold pink stuff after october? Is it going to end up on the discount rack next to the halloween crap? Who gets the proceeds then?

All in all, I think this pink thing is good. Any publicity is good and the media really focus on it and feature a lot of stories during october. I know there are still people out there that need educating. Last time my little sister went in for a mammogram they told her that she didn't need to go in every year because the cancer was on our father's side. Really?? I know I was ignorant and didn't know that I should have been getting mammograms every year but I didn't work in a freaking breast care center! Somehow you expect a little more from your health care professionals. Speaking of which, I have a great team of docs and counselors, etc that are very well educated and I get a lot of help from. I know I've heard some bad stories from others about their tods. It makes things so much easier when you have a good team. I asked one tod yesterday to write a letter for me so I could send it to my ins company to try and get my surgeon approved. She had her letter done before I even finished my own. I didn't even have to tell her that I was in a hurry. All my tods have been like that so far. I always get my calls returned pretty quickly and they always give me the time of day. I wonder how/why people work with cancer people day in and out. It seems so emotional draining to me. But I'd like to thank them all! And I'd like to thank my friend at the acs and all her colleagues for all their hard work. This is an especially busy and stressful time of year for them! I feel like a slacker next to all these people. Years ago when my mom died I thought about volunteering with cancer patients and just never got around to it. Once my life settles down I'd like to follow through with it. I wonder how all the people do it that just don't have anyone in their lives to help them out. How do they get to and from all the appts and surgeries? There are some procedures where they do not allow you to go home by yourself. What if you don't have anyone to take you home? And what about all the single moms out there? Do they drive themselves home from chemo and struggle to get dinner together for the kids? That is the kind of volunteering I would like to do. No one should go through this alone. And I'm not alone so I need to thank my family and friends. Even though I don't live near most of them anymore, I still feel their support. And a big shout out to my dw. I wouldn't want anyone else by my side. DW, you're the best I ever had. Love you:)

Wednesday, October 28, 2009

jumping off the DIEP end

Wow. Did some homework yesterday and I have an idea of when I might cut the bitches off. It may be as early as February. Wow. It feels so real now. So strange but real. Like I really am a brca mutant. Like I am not going to wake up from this dream. This dream is really my life. I hate to admit it but I felt a little excited yesterday. I can finally see an end to this. Well, it won't ever be over cuz I'll have new numb boobs but this anxiety about it will be over. SOON! dw got butterflies in her stomach when I told her we might be on for February. It's been almost three months now that I have been dealing with this and feels like nothing was ever going to happen. I kept pushing my decision deadline back and back. I've been leaning towards surgery for about a month and a half but I think I was kind of hoping I would never have to do anything. This is it. The game is on.

I have seen a few plastic surgeons and done a lot of research and am going to have diep reconstruction. That is where they take your belly fat and use it for your new boobs. So I will have new boobs and a new flat belly. My new boobs will look real and be warm or cold depending on the temperature. They will grow or shrink as my body weight grows or shrinks. I should be able to feel them a little bit. Kind of like if you iced your ankle for fifteen minutes - you can feel it but it is kind of numb. I am hoping they can do a nipple sparing surgery which means I would keep my nipples and they too can react to hot and cold (way cool!) but probably no feeling what so ever. There is a chance that a boob can fail (die). If that is the case, they would do another kind of procedure to replace it, I think it is called GAP. This is where they take tissue from your butt. Yep! Gives a whole new meaning to t&a.

These surgeries are high tech and are done by micro-surgeons. We have a few people that do them here in slc but they don't do very many and the surgeries take over 12 hours. If I do it here, it may require two surgeries because of how long it takes. They like you to do the mastectomies first and have an expander put in to keep the skin loose and then once I heal from that 4 hour surgery they would do the 12 hour diep surgery. I am not crazy about having to heal from 2 surgeries and I definitely do not want to wake up without boobs from that first surgery. I also don't want dw sitting around for 12 hours wondering how things are going. I do have another option. I could fly to south carolina and have it done by a dr that does about a hundred of these a year. She would do it along with another micro-surgeon and it takes about 6 hours and I would have boobs when I wake up. Sounds like a no brainer! But things are never that easy. I need to get my insurance to go along with it since it will be out of network. I only have in network insurance which has been great since it comes with no deductible and 100% coverage. So now I have 2 weeks to try and get this approved before I need to decide if we should change our coverage because it is open enrollment time at work. Luckily the surgeon's office will do most of the hard work for me and they have a lot of experience dealing with insurance so I will have to trust whatever they say.

So hopefully we will be in sc in february. If anyone knows any cool things to do or see in charleston, let us know! We will have to be there for about ten days.

Tuesday, October 27, 2009

just chillin

I went to a cancer survivor thingie over the weekend. It was held at my hospital (the one where I had surgery and most of my tods are affiliated with) and consisted of a couple of short classes and a panel of docs to answer our questions. Of course it started with the pink gift bag full of trinkets. I do wish they would change the bc color to orange, my favorite color! Maybe I will remember to send the pink bag to my nieces at christmas. Seems like all the little girls these days like pink.

So I learned a couple of things at this thing. Well, I think I already knew but I guess it just reiterated them. One thing they talked about was finding your non cancer self. This is the person you were before your world changed. I know I have buried my non brca self away months ago and I have spoken about trying to find it again but I haven't tried very hard. I have been stuck in a rut sitting here on the computer trying to find better solutions, getting support, giving support and avoiding life. I sit here and wallow in self-pity and have been ok with that. I feel like a little bratty kid throwing a temper tantrum until I get what I want. But what I want is never going to happen so I guess I need to pick myself up off the floor and deal with it. My non brca self was never on the computer except at work. Work? I haven't worked in months. I used to be a hard worker, not a workaholic but someone that worked hard when at the office. I used to be in love with my free time as well. Someone who enjoyed exploring something new each weekend. Lately, I have just not been motivated. I can't even pay attention to a football game anymore. I am on the computer while watching and don't even see what is going on. Don't even bother to stay up and see the end of the game. I used to hate to go to bed before the end, even on the east coast which meant a late night.

I am taking some baby steps. I took a bath over the weekend! Took some time to just relax. Read a couple chapters of a novel. Now I need to work on my homework before my next counseling session next week. I am supposed to set a date for cutting off the boobs. And I am supposed to contact my insurance company to see what my cost is going to be. Not looking forward to talking to them! But I am in a good mood today. Can you tell from the picture that it is snowing out today? And some is sticking to the ground! Can't wait for the clouds to clear so I can see how much is in the mountains. I also need to apply for jobs. Need the money and it will get me off this computer and take my mind off things.

Oh yeah, that other thing I learned. There was a supporter in the audience that asked how do you support someone going through this? That is a good question. We can be a moody, bitchy bunch and we don't always know what we need. I can tell you things that help me feel better. Hugs, telling me that I am strong enough to do this, getting together to do something, just anything to fill the time. I have a link on the left of a top ten list of things we like to hear and don't want to hear. Also, goodbyetoboobs has a great post about it as well, 'don't just say anything.' And I need to do my part as well. Trying to communicate better with my dw. And maybe one of these days I will pick up the phone and see how you are doing.

Monthly Reminder: October is almost past. Did you check your boobs or pecs this month? Some links on the left if you don't know how or need a refresher course.

Saturday, October 24, 2009

anger management

They say there are five stages to grief. Denial, anger, bargaining, depression and acceptance. They list them out as if you progress from one stage to the next. In reality, it doesn't really work that way. I bounce back and forth from one to the next, or even mix them together in a smorgasbord of emotions. I haven't quite got a handle on that last one yet, the acceptance part. That is mainly why I decided to seek help through the bc social worker. I feel like I have made the right choices for the right reasons but still need some help in following through. For me to ask for help is saying a lot. There are few times in my life that I have asked for real help. I can't even think of one other time, offhand. I'm not talking about little things like asking you to set the table. I like to describe myself as fiercely independent. I used to think that was a good thing but I am learning that it is more like a weakness. My independence taught me to be silent, suck it up, bury my emotions, not let others in, put on a good front. I'm trying but I think it is going to be a long haul for me! I am so much better at writing about it than talking. Even then, we will see how long this stays posted before I delete it:) Last weekend, word spread through my extended in-laws as to my plans for cutting the bitches off. As they broached the subject with me, I basically nodded my head and said that was indeed the plan then turned to another subject. I have difficulty talking about it. Maybe cuz I'm still working on the acceptance part. Maybe cuz I think you just may not agree with my choices. I don't know.

I have had some good moments this week. Maybe from my one session on Monday. I have even been able to tell my dw a couple of times how I was feeling which she really appreciates. This is after all, pretty fucking hard for her to watch me go through and she feels helpless. But the majority of this week I have felt really angry. It has been a few days and I am still feeling angry. My anger is really at the brca mutation but there is nothing I can do about that so I have to turn my anger elsewhere. I am angry that I have to make such tough choices. I am angry at the tods for not telling me exactly what to do yet I am angry at them when they do tell me what to do. I ask them questions that I already know the answers to then I get angry when they answer because I don't like the answers. I am angry at some of the research and how indecisive it is. How things are controversial like is hormone therapy good for you or bad? I ask one doc and get one answer, ask another and get another answer. They don't really have all the answers and that makes me very mad. I am angry that I have to pay to get new boobs after I cut them off. Sure, insurance pays for some of it but not all. Why do I have to spend money on new boobs when I don't want to get rid of mine? I am angry at a lot of other things, but you get the point. I like to work out my anger at the gym. If that doesn't work, I like to follow it up with some food that is bad for me. Good old ben and jerry. I am not angry at them, I love them:)

Thanks for listening

Thursday, October 22, 2009

emergency broadcast: action needed

Hey everyone, another post for today! Late breaking news about ovarian cancer funding. We need your help to prevent cutting the ovarian cancer budget. OC is a risk I face, being a brca mutant. This year, the National Cancer Institute estimates that there will be 21,550 new cases of OC and 14,600 deaths by OC. The main reason for the deaths is that there is not a good way to detect OC before it is in the advanced stage. That is why so many mutants choose to remove their ovaries. My risk of OC is estimated at 27% whereas yours is probably 1% or below and some mutants have over 40% risk. Though I know of no OC in my family, I did learn that my two aunts that had breast cancer did have hysterectomies back in the 70's. I don't know if they had all of their junk removed or just some of it, so it is possible that they may have prevented OC before it happened. Regardless, my risk is still very high.

Please make a few phone calls today or tomorrow and spread the word. Many thanks


Dear Janine

We have received the following request from the Ovarian Cancer National Alliance (OCNA).

As a result of the Senate mark-up, the Department of Defense's Ovarian Cancer Research Program's funding has been slashed in half - from $20 million to $10 million. Research performed by this program is critical as it is solely dedicated to performing research about ovarian cancer.

However, if we act now, we can work to help get $25 million as the final amount appropriated. As Congress prepares to go into conference where the House and Senate meet to finalize appropriation levels, a Dear Colleague letter is being circulated in both the House and the Senate urging the leadership to take the funding level that was set in the House -- $25 million.

Please help us make sure that the Dear Colleague letter gets enough signatures to make an impact. Instructions are provided below so you can call your Representative and two Senators and ask them to sign on to the letter.

Instructions for Calling: Please call your Representative and BOTH Senators.
Estimated time required: 8 to 10 minutes.

1) Go to and type in the zip code of where you live or where your organization is located. There should be three people listed - your two Senators and your Representative - you will need to call all three.

2) For each office you call, identify yourself as a constituent and state that you would like to speak to the Military L.A.

3) When speaking to the military L.A., you can follow these talking points:

a) Introduce yourself, state that you are a constituent and what city/county you are from, and your affiliation with your ovarian cancer organization.

b) State that you are requesting your Representative to sign a Dear Colleague letter that is circulating that requests both House and Senate leadership to appropriate $25 million to the Department of Defense Ovarian Cancer Research Program for fiscal year 2010.

c) For your REPRESENTATIVE: To sign the letter, tell them to contact Daniel Zeitlin in Rosa DeLauro's office (If your Representative is a Democrat) or Brian Fauls in Dan Burton's office (If your Representative is a Republican).

For your SENATORS: To sign the letter, tell them to contact Megan Moreau in Senator Menendez's office (If your Senator is a Democrat OR Republican).

d) Thank the staff for their time and request that they contact you by phone or email as to whether or not the Representative signs the Dear Colleague letter.

4) Send an email to the Ovarian Cancer National Alliance's Policy Fellow, David Zook, at stating 1) what office you called, 2) who you talked to, and 3) what the staff said regarding signing the Dear Colleague.

Warm regards,

Sue Friedman

Sue Friedman

to test or not to test

When faced with a family history of known brca mutation or suspicion of a mutation, some people struggle with the decision to test or not to test for it. Maybe because of fear of discrimination from insurance companies, maybe they are afraid and would rather not know, maybe their insurance won't cover it or maybe they are in denial. For whatever reason, not everyone chooses to be tested.

For me, testing was the easiest decision I've faced so far. I didn't know what brca was, but as tod described it I assumed I had it. I wasn't concerned with possible discrimination from insurance since I already face that with mutant 1. My dw called the insurance company right from the doc's office to make sure I was covered as it costs over $3000. They said I would be covered as long as my history showed the need. I tested because my doc thought it was important not only in my surgery options and my own health, but that it was something that should be done for my family. The whole testing thing is tricky and should be done in the right order for it to mean anything. It is best to start testing with someone that already had cancer if possible. This way you can avoid false negatives. Some families have an even tougher time because they may have huge family history of breast and ovarian cancer but test negative probably because not all the gene mutations have been discovered yet. But our family is lucky:) Our gene is identified. We have brca2 mutation 8765delAG, resulting in premature truncation of the brca2 protein at amino acid position 2867. What this means is that now my relatives can test for a lot less money, about $300-400, since they only need a single site analysis rather than comprehensive. It also means that if they test negative they can feel assured that it is a true negative.

What are the advantages to testing? Well, number one would be that hopefully you test negative and I can cross you off of relatives I am worrying about! So please, if you do test and it comes back negative, I would really love to hear this! Seriously, though: if you test negative, you will not need to do any extra surveillance at the docs. You will fall into the normal population risks of bc and oc and pc and melanoma and can relax and breathe easier. You can also cross off the need for your children to be tested as you cannot have passed it to them. Yeah, more people to cross off my list!!! Well, what if you test positive? Yes, it does happen and I will shed some tears. I am heartbroken that wondertwin is in my shoes, but she is wearing them better than me. Always seems to be ok and calling me to give me support. Guess she really is my big sis even if by only two minutes. Yes, if you test positive it is sucky but maybe this will extend years to your life, and that is not a bad thing at all.

Disadvantages of testing? Now your insurance company has this on your records. Well, if it is negative, that might actually help you when you are trying to get insurance since you can tell them the rest of your sucky family history will not apply to you! If you are positive, you aren't supposed to be discriminated by private ins at this time, but they may make it unaffordable. Honestly, though how many of us can afford private ins in the first place? Things that you might want to do before testing are try and get some supplemental insurance like aflac and try and get some life ins. And maybe upgrade your health ins to a better plan. I know this is about the time of year where you can choose a new plan through your company ins plan. I am lucky to have picked the upgrade last year to cover 100% in network rather than the 90%. Doesn't sound like much but I can tell you I have saved thousands. Of course, I may have difficulty going to an out of network surgeon so that is something to consider. Sometimes you can get them to allow it but it is a pain in the ass.

So how do you go about testing? I would suggest seeing a genetics counselor first to talk it over. I can use my resources to help you find one or you can use the link for FORCE (facing our risk of cancer empowered) on the left. They have info on their website. Of course, you could also get tested at your doc's office if that is what you prefer.

Wednesday, October 21, 2009

the big house

Judging by the size of cancer buildings I would say cancer is big business here in the states. I have known too many people affected by cancer but before I got it I didn't really notice the buildings. Now I see them all over town. Some blend in with all the other office buildings. Some are part of other medical offices. Some just are so huge they jump out at you. From the outside, they are not so bad. But once you walk through the door it is another story. My onc is housed in a building that looks like any other office building. One that doesn't look too different than the last place I worked. But step inside the door and find a gigantic lobby full of way too many chairs. Offices on one side, the entrance to radiation therapy along another wall. Receptionists wearing 'cancer sucks' buttons. Around the corner is the room full of the chemo chairs. When dw and I went there we were instantly uncomfortable. It felt like a place for sick people. I'm not sick and felt like I was in the wrong place. I sure didn't feel like going back. Oddly enough, this is the same cancer house my sis-in-law goes to. We almost had the same tod but I switched appts and ended up with a different one. I think someday I will have to go back and visit the onc again but I am avoiding the radiation and chemo rooms. They scare me maybe more than the slice and gut. I don't want to be one of the sick people.

The other cancer house I go to is huge. I have been there a few times to use the cancer library. It is an intimidating place to enter. The first floor alone is about 100 feet high, no joke. Very fancy, too. The place is encased in marble and glass. I had to warn dw before the genetics counselor appt that you have to prepare yourself to enter this building. I wanted us to be in a good mood for our meeting. I wanted the counselor to get down to business and not be distracted by any tears or fears. You can feel good but once you go through the sliding doors it can take your breath away. One must be focused and ready to enter. The first time I went in there I didn't know where I was going. I went to the info desk but there was some woman there crying and talking to the receptionist. I think she was having a little breakdown so I wandered around looking on my own. At our appt, a woman shouted out that she had just finished her last appt and was 10 years cancer free. Applause broke out in the waiting area. I couldn't help thinking that I was just beginning. When we were done, we took the stairs down. This staircase is massive and fancy and very likely little used in this building full of sick people. It winds from the second floor to the lobby and has more stairs than the three flights I take to get to my apartment. One slip down this sucker and you might not have to worry about cancer anymore. It has big marble steps. I wish I could steal one of the steps. Then I probably wouldn't have to worry about how to pay for the surgeon of my choice. This is where my social worker is housed as well. I had to calm myself outside the building for about five minutes before I could enter as I was afraid my heart was going to bust out of my chest. Luckily the big house is on top of a hill and offers a view of the whole valley and salt lake. Not a bad place to chill. I laugh to think that I used to bring visitors over to the top of the parking garage here for a view of the city. Those were the good ole days.

Tuesday, October 20, 2009

hey mr dj turn the music up i wanna dance with my babyª

DW's sister was married over the weekend in mn. We went out there for about 4 days and had a great time. We got to stay at their house so we had plenty of time time to kick it with the bride and groom and help out with the remaining details and meet their friends and his family. DW's family is very caring, giving and loving and it is great to know that they are supported by other people that share those qualities. It always feels so good to be around that love. We had a lot of fun before the wedding driving around in a humvee convoy taking pics at minnehaha falls. Didn't get to drive, but thanks little A for trying to make that happen and for sharing your Patrón! The ceremony was beautiful and so was the hall as mj loves her colors! Had a great time on the dance floor with all the family and friends. Thanks to all those trying to teach me how to dance, better luck next time! Received lots of hugs which I need right now. Gotta love the hugging.

Gotta mention my brother's wedding as well! That was last month in co. We roadtripped there which was fun. Very pretty time of the year and we got lucky with the weather. That was an outdoor ceremony on top of a mountain in a park. Very nice and couldn't have had better weather. My bro and my new sis make a very cute couple and also are surrounded by some good people. We met several friends and family and had a very good time with them. Hope to see some of them in vegas! Took the long way home and showed dw my old stomping grounds at keystone resort where i worked oh so long ago. The village hasn't changed much but dillon has blown up!

The first three pics are my bro's wedding and the rest are from dw's sis wedding.

Lots of people wondering how I feel and saying how healthy I look. Well, I have never felt sick. I am physically great. I spend a lot of my time at the gym or outside. I have a nice healthy(?) tan. I've felt worse from the common cold than from cancer. Mentally, I am all over the place but I am working on it. I met with a breast cancer social worker yesterday to work on some of my issues and I think it might help. I actually felt pretty good this morning and working on the homework she gave me already. But then went to see my primary tod who has been out on maternity leave til now. I wanted to talk to her about my other health concerns as my cancer tods seem to blow them off as not that important. Cuz in reality, cancer will probably not kill me. I have a much higher chance of dying from heart disease because of my diabetes. So turns out I am already doing almost as much as I can to avoid heart problems which is good. But I was at a loss to hear my tod say that I shouldn't go on hormone therapy if I gut myself. My cancer tod already said it was ok if I did the slice and gut to take hormones. But according to my primary tod the estrogen may increase my risk of heart problems. Instead of bursting into tears I proclaimed that maybe I would hang on to my ovaries if that was the case. This was met with the usual weighing your risks line. Needless to say I was pretty bummed. I'm only 41. I'm not ready to say goodbye to great sex already. No proof that my sex life will plummet, but it could and I was counting on being able to take hormones in case that happened. Now I am just pissed. Mutant three wants to kick the shit out of Mutant one and Mutant two said she would help.

ª from the song Music by Madonna

Wednesday, October 14, 2009

we now return to our regular programming

Looking forward to this weekend! By weekend I mean Thursday-Sunday:) Extra long for my sweetie. My days are all like the weekend but this weekend will be special. I vow to stay away from the computer. No surfing online, reading boards, blogs or anything brca related. I am taking a break. We will be immersed anyway with wedding prep and hanging out with my in-laws whom I adore. It is so hard trying to squeeze everything in when we go to mn. Most of my extended family lives there and half of dw's does. And I used to live there so I have friends that I often neglect due to time constraints. Mom-in-law is going to see this and start pushing for us to move there again! Wish we could just scoop all our friends and family up and make our own neighborhood. That would be so much fun! It'd have to be west-side though:)

Enjoy your weekends and I'll catch up with you sometime next week. For those who may be visiting dear little boy's family this weekend, please send our love.

Sunday, October 11, 2009

sisterhood of the traveling genes

I have a niece that is cute and spunky, sassy and sweet, mischievous and observant and just a big old ball of fun. She loooves candy and she loooooves to torment her older sister only as a little sis can! She knows what will upset sissy and how to get her to explode or cry. But she also knows compassion and when to use it. When I ran away from brca and was in ny, the poor kid had to go thru allergy testing. I don't know any kids that like needles and I know several adults that don't care for them either. This test involves a whole lot of needles to say the least! I saw the marks and heard the story. How mom held her hand while my niece laughed (cried?) hysterically while the doc went as quickly as she could, poking each dot on her back. A promised treat helped her get thru it. That afternoon, we picked up sissy from play practice. She would be doing the allergy testing the following week. As she saw some of the marks not hidden by little sis's shirt she appeared worried and asked if it hurt. Little sis bravely said 'not really' while looking at mom and myself with big eyes as if to ask if that lie was ok to tell.

I have three sisters. Three biological sisters and I love them dearly. And I have four sister-in-laws that I adore as well. I also have a world full of rugby sisters. Some of whom I've played with or against and many, many more whom I've never met. These strangers would give me the shirt off their back simply for the fact that I was a rugger. And now I have a new band of sisters, the brca sisters. We are there to listen, support, offer advice, spread the newest findings and just to hold each others hands. We are all different and we are all alike. Some have had cancer, some have had really bad cancer, some don't ever want to risk getting cancer and some are keeping a close eye on their bodies through all kinds of testing. We are previvors, survivors and people doing the best they can to watch out for cancer. I admire them all. They are all strong and they all help me along in this journey. The previvors though, they are especially special. These are the women who go ahead with the slice and gut before anyone tells them they have cancer. They are often viewed by the general public as crazy for doing so. Extremists, if you will. Often, they are even unsupported by their families in the choices they have made. My own sister, my twin, she is considering to join the ranks of the previvors. God bless her. The previvors are also conflicted. They don't know where they fit in, in the whole cancer community. They are often unrecognized outside of the brca world. Really, this brca mutation test has not been around very long in the medical world, since 1994 or so. I certainly had never heard of it prior to this past July. I just want to share with you how the term previvor originated as written so well below by Sue Friedman, founder of FORCE.

Previvor: Past, Present, & Future

July 22, 2008

Use of the term “previvor” has become common, which, in my opinion is good for our community. Since popularization of the term increases the chance that its meaning and origin can get lost or forgotten, a post on the origins and future of the term seems timely.

I have seen some people react strongly (with intense like or dislike) to the term, which I can understand. By sharing the history and reason why the term was coined I hope to help people accept or at least understand the intent and meaning behind the creation of the term.

In 1998, after finishing my treatment for breast cancer and after learning that I had a BRCA 2 mutation, I sought out breast cancer support groups. Because of the hereditary component to my cancer, I felt that others in the group couldn’t relate to many of the issues I was facing. My needs were not entirely met by the standard cancer support group model. Along the way I met women who were high-risk because of a BRCA mutation or other risk factor but who did not have cancer. These women became my friends and inspiration; certainly they were facing difficult decisions and issues that most of their friends couldn’t understand or relate to. With a diagnosis of cancer I immediately joined an already well-established community (albeit one I didn’t want to belong to) and instant access to support and resources via great organizations such as Gilda’s Club, the Wellness Community, and local support groups. Sadly, I noticed that many of my new high-risk friends without cancer felt alone, and not comfortable with using resources and forums created specifically for people with a cancer diagnosis.

I founded FORCE in 1999 under the principle that nobody should face hereditary cancer alone. Our goal has always been to include all who have been affected by hereditary cancer: those with cancer and those without, those with a known mutation and those with cancer in the family even if no BRCA mutation has been found. FORCE was also established to provide a home and safe haven specifically for high-risk women who had very few other safe and supportive places to share their common experiences.

The term “cancer pre-vivor” arose in 2000 from a challenge on the FORCE message board by Jordan, a website regular, who posted, “I need a label!” At that time I knew that the medical community had a label: the term “unaffected carrier” is used to describe those who have a gene mutation but have not had cancer. The term applies from a medical perspective, but can be dismissive for people who face the fears, stress, and difficult choices that accompany an increased risk for cancer. As a result, FORCE developed and promoted the term “cancer previvor” for “survivor of a predisposition to cancer.” The term includes people who carry a hereditary mutation, a family history of cancer, or some other predisposing factor who are living with the knowlege of being high-risk.

Over the years the term previvor has been incorporated into the FORCE lexicon. Due to the enthusiastic use by our community and the medical community’s lack of a better word, the term has slowly been accepted by the medical and research community. In 2007 a series of high-profile articles in the New York Times brought public attention to the term and the serious issues that cancer previvors face. In December 2007, Time Magazine chose “previvor” as #3 of the top buzzwords of 2007 giving millions of people exposure to the term.

What does the future hold for the term and the community? The explosion of genetics research has led to the discovery of genes that predispose people to many different diseases. One of the powerful promises of genetics research is the ability to better predict risk and develop effective strategies to prevent diseases like cancer before they develop; this is an area where we have great potential to make an impact on the wellbeing of this and future generations. With the discovery of more genes that predispose to an assortment of diseases; cancer, diabetes, Alzheimers, we can expect that more people will learn that they are at high-risk for something. And risk is a spectrum: not all risk is created equal. Someone with a 25% lifetime risk for breast cancer for example,(compared with the population risk of 12.5%) may have a different set of issues to face and choices to make than someone with an 85% lifetime risk for the disease. These emerging “previvors” will face new challenges and dilemmas that may be different from those faced by the BRCA community but which require a new set of devoted resources. Through recognition and awareness of the unique issues each high-risk group faces we can begin to address their information, resource, and research needs. Perhaps this will require the development of a government agency–maybe an “Office Of Previvorship” (OOPs for short?)–with committed resources and funding to study and try to meet the medical and emotional needs of those who have hereditary predisposition to diseases.

The development and success of the term previvor is just one example of FORCE’s continuing role in uniting and providing a strong voice for families touched by hereditary cancer. For more information on FORCE and our programs, visit our website at

Saturday, October 10, 2009

goodbye dear little boy

Our friends little boy passed away this morning. He fought hard and he fought for as long as he could. In July 2007 he was diagnosed with Chronic Granulomatous Disease (cgd). This is a rare immunodeficiency caused by a genetic mutation. It essentially made him very susceptible to infections as his immune system could not properly fight them. About a year and a half ago this little boy went to the hospital for a bone marrow transplant in hopes that this would enable his body to fight off all the bad stuff out there. They hoped to bring him home in 3 months time. Things didn't go as hoped and the months stretched on. We never met this little boy but I feel like I knew him. I read about his daily test results and procedures and knew if he had been able to sleep the night before. I rejoiced when he had a good day or when his sisters were able to visit him. He was a strong little guy and will always have a place in my heart.

Friday, October 9, 2009

a year ago

Last October was full of stress and sadness. A much different kind than this October. The stress came from trying to get a house ready for sale. Trying to get everything packed up for the move. Trying to finish up at work. The sadness was from saying goodbye to friends, family and coworkers, neighbors I enjoyed and a house I had fallen in love with. But that October also contained excitement. I was looking forward to the move. I had been to Utah several times. The land here is amazing, no other way to put it. I looked forward to all the adventure coming our way. And did it come! We have enjoyed the heck out of the mountains here. Hiking, biking, snowshoeing, skiing and snowboarding. And just gazing. We have explored the southern red rocks of Utah to no end. Backpacked amongst cliff dwellings. We have even been on a dinosaur dig and seen real dinosaur bones. We have seen moose and bald eagles. And best of all, we have had several friends and some family join us on this great ride.

Wednesday night I said I didn't feel relief yet from my decision. Yesterday I did feel something. I can't say it was relief. More like release. I found myself not thinking about this for a couple of moments. I also felt myself looking ahead again. Looking ahead to the next adventure. Finding normal again. I have always tried to stuff as much fun in my life as possible. These last couple of months I pushed the pause button. I am going to try and stuff my grief in my back pocket and push the play button. I am starting to feel ok.

I have attached some pics. The colorful ones are from our hike at Stewart Falls a couple of weeks ago. The snowy ones are the view from our balcony this past week. And the delightful child is our friends child born the day before I left ny. I included her cuz you just can't help smiling:)

Wednesday, October 7, 2009

the math is broken

I love math. It was my favorite class in high school. Maybe the only class I really liked and usually the only class I consistently did the homework for. I like to read but I hate nonfiction so I usually did not open the textbooks I would drag home every night. Although I have not been able to relax with a novel since June. All I read now are cancer books, brca blogs, message boards and research articles. I bring magazines with me to my appts but I can only glance through the pics. My mind is on hyper drive and can't settle down on trivial matters.

Anyway, back to math. This brca stuff is full of statistics. If I take tamoxifen I could reduce my risk of second bc by 50%. Likewise if I took out my ovaries. But if you do both it will not add up to 100%. I had somewhere between 50-80% chance of getting bc but as my genetic counselor pointed out, I have 100% chance since I did get it. Men with brca2+ have 6% chance of bc and 20% chance of prostate cancer. This is where the math starts messing with me. Only 6%, yet both my father and grandfather got it. And my gf got prostate as well. I have a 12% chance of a second bc within the next 5 years and 30% over my life. My aunt had a second bc within months of finding her first. It was in the opposite breast so not a recurrence of the first bc. I just can't put any faith in the stats. Look at the Boston Red Sox. If one put their faith in stats, they never would have beaten the Yankees that one glorious fall. Not that I am a Red Sox fan, just hate the Yanks! Go A's.

So if I can't trust the math or my angel, then how do I decide? Everyone keeps telling me to go with my gut. But I don't like what my gut tells me. I have been trying to silence the gut for the last few weeks. My brain agrees with my gut but my heart is pleading its case. The heart says flee this place. Leave Utah. Go somewhere else and maybe the gut and brain won't find you. It worked before. I fled to NY for two weeks after my last surgery and it only took a couple of days for sleep to find me. But that was before I gained all my knowledge. My fear is still very strong but my brain is pushing its way to the top. There are a lot of things I don't want. Like lymphedema, countless biopsys (turns out I have dense breasts which can cause confusion), waiting and waiting for yet another test result. And I don't want more cancer. I asked tod, would my second cancer just be another baby cancer and she said usually it will be aggressive. That's not something I look forward to. I asked if something better was in the works. This is something I have asked each tod. No one has said yes yet. Maybe in the future. Maybe in 15 years they won't need surgery. That's good news for the kids. That makes me happy and hopeful for them. But I can't wait that long. I couldn't face myself in the mirror if something bad happened to me because I was too scared to face it.

I am going to cut the bitches off. I will start the ball rolling. It will take some work with the insurance and logistics but I am moving forward. I don't feel relief just yet. I am sad. But I will be happy.

Tuesday, October 6, 2009

why do i do this?

I wonder sometimes why I am writing this blog. I am a very private person. It makes me feel a little vulnerable letting you in. Sometimes I cringe after sharing my feelings and want to delete my post. It is a catharsis but I do have a journal. I don't have to share my feelings out loud. I think I started the blog for my brca family. I have been reading their blogs and it really helps me get through this whole process. It is nice to know that someone else understands what I am going through. I wish no one had to understand but it is what it is.

I decided to share this blog with my family and friends because I know you care about me and would like to know how I am doing and I just don't have the spirit or energy to always pick up the phone. And I am not a facebooker. My dw is but she doesn't have the time or energy and I think she was protecting my privacy. I know some of my words make you sad or make you cry. I hope I can make you laugh sometimes too. My intention is not to make you feel sorry for me. I guess I am just trying to be honest about how I feel and how I am dealing with this. I am fully aware that everyone has their daily struggles, big or small and none should be dismissed as insignificant. It could be as little as your dog eating your donut. Hey, I love donuts and I was looking forward to that chocolate old fashioned that Shelby scooped up in my moment of distraction! I hope that I can offer you some strength in your own struggles as I draw strength from others. Some of you share the same friends as I do. You know the family whose little boy has been in the hospital for over a year battling fiercely against his mutation. I am so inspired by their strength and courage and ability to maintain a sense of humor despite it all. I know we can get through this. I just need to whine and cry and protest a little first. I feel like if I don't put up a stink, they will never work on a better option than the slice and gut.

good news

Just a quick update. I did hear from my onc last nite. My mri is all clear! No signs of cancer. So the onc says we will continue doing what we are doing. Thanks doc! Guess he was not looking at my file because we are doing nothing at the moment and that wasn't one of my treatment options. Big sigh of relief:)

Monday, October 5, 2009

post it notes and life changes

I like to jot notes and lists down on post it notes and stick them to my phone or wallet or in my pocket. Grocery lists, to do lists, xmas lists, whatever. It is getting colder now and just pulled out a pair of jeans that I haven't worn since my last day of work. That was June 25th. In the pocket I found a post it note with a list of stuff to do before my sister and her family got here on the 27th for a week of fun. We were headed to southern utah for most of their visit and had lots of fun things planned. After their trip I was planning to try and find temp work for a couple of months while working out hard in the gym to prepare for school in the fall. After debating for several years what I wanted to do with my life I had finally decided to go back to school and had signed up for classes. This was a big deal for me. I hate school and I hate not making money. I hate sitting in a classroom. I like doing things. There are a few things that I really love. Flowers, sports and cars. Flowers don't pay the bills. Sports, well I have contemplated going back to school years ago when I found out about physical therapy. I took a few classes and put in some volunteer hours at the hospital and sports clinic but I just didn't want to go back to school and I fell into something else instead. So that leaves cars. I have always loved classic cars and trucks. I discovered that auto body school was much more doing than sitting in a classroom. I decided to go for it. I was a little nervous. I knew this was going to be hard on my body. Especially a diabetic body whose joints are starting to go. And it is a mans world. But I figured I would give it a shot.

June 26th. This was the day of my first mammogram. I wasn't really nervous about it. I felt fine. Just going in for a routine exam. I was also going in to get an ultrasound of my thyroid. My doc thought it was ok but just wanted to make sure. I have a goiter in my neck from my broken thyroid. So at the hospital, walking from one appt to the other I had a few seconds of a panic attack. What if they find something? I wasn't even worried about the breasts. I was naive at the time. My dad had breast cancer but I didn't know what a big deal that was at the time. I also did not know that my grandfather and two aunts had bc as well. I knew we had cancer on both sides of the family. My mother died from bile duct cancer and her brother died from colon cancer. My dad's brother died from stomach cancer. Getting cancer was not something totally unexpected. But I didn't know what brca was. I didn't know what kind of decisions people had to face. I thought you get cancer, you do what the docs tell you and you fight it. Maybe I am having a hard time because I'm not scared enough. I just had a little bitty baby cancer. Nothing that is going to kill me. I think most of my fear is from years of worrying as a diabetic about amputation. I grew up terrified that I would lose a limb. Losing my boobs would not be nearly as bad as an arm or leg but it still sounds like amputation to me. Yes, I can get new ones but they won't work the same. And you want my ovaries too? The tods are 4/4 on that one. They don't even try and sugarcoat it. Even if I don't ask their opinions they just come right out and say it as if I am taking a poll.

June 29th. I am trying to pack the truck and get out of town. The breast center calls and would like me to come back in so they can take another look at my left boob. I say I am on vacation and will come in next week. It is starting to sink in now. Could be nothing but I think it is probably something. That is the way my head works. My faith is not strong.

July 7th. I go back in for more mammos. Turns out they already know what is in store for me but for some reason they don't tell you over the phone. They see calcifications and want to take more pics of it. They already knew I would need a biopsy. But they tell me don't worry, 80% of the time it is nothing. They tell me this again on July 14th, at my biopsy. July 15th they tell me sorry but we did find dcis. Please talk to your doctor and she can refer you to a surgeon. July 15th, my brother's bday. How fitting, I was diagnosed with diabetes on my mother's bday.

July 17th. Saw the surgeon. As soon as I mentioned my family history (which I now knew) my surgeon started talking about brca. Wanted me to get tested. Said I could wait a month for surgery and get a bilateral mastectomy. What???? WTF. No. I agreed to be tested but said I wanted the lumpectomy please. I took my lump and two days later see her again. She is pleased by how well I am healing. Then tells me and my dw that my margins are not clear and she needs to go in again. Says it is unfortunate, only happens about 20% of the time. But my cancer is hard to get at. Mentions the bm again. Still don't want it but I think she is trying to warn me that if she can't get clear margins this time I will not have an option. This time my margins are clear but my boob is not happy. So swollen and every color of the rainbow. Feels like they put a rock in it. I have a hematoma. Much smaller now but still there after two months. Doc says it will go away in 3-6 months.

Oct 5th. I sit here and wait for call backs from two of my docs. I am waiting for my ca125 results from 3 weeks ago and my mri results from last week. At the very least, I know my surgeon can pull the results for me on Wednesday when I see her. She wants me to come in now and see her. I wasn't supposed to go in til Nov. I think she may have found out I didn't start radiation. She probably wants to know what I'm going to do. I want to know what I'm going to do too. I think she can help me talk through my reasoning and keep the fear and emotion out of it.

Back to my life changes. I dropped my classes. I was not going to be physically ready what with not being in the gym most of July. And I was not mentally ready for school. Plus, I think I would rather work with people instead of cars. I have had many great people helping me and it means so much. I am rethinking the pt thing again. Just need to bite the bullet and go back to school.

Sunday, October 4, 2009

snow makes me happy

Some people hate the snow. Actually, it seems like a whole lot of people hate it! I don't know why. Lots of good things come with snow. Like snow days (no school), snow angels, snowball wars, skiing, sledding, snowboarding, snowshoeing and on and on. And it is so damn pretty. I love the snow. I even like to shovel it. My dw is a california chick. When we moved to ny she experienced her first ever snow day. In fact, I think school was canceled at least four days that first winter. I am lucky she loves the snow too. When a nearby town got dumped on with over ten feet of snow in a week, we ran over there with our snowshoes:) Why am I talking about snow in October? We have some!! Wednesday morning as I went in for my mri it was cloudy and raining. Here in slc the mountains often disappear under a fog when it is raining. As I walked out of the hospital, I glanced up and the clouds had lifted, revealing mountains full of snow! It made me smile. And the snow has lasted all week even though it is not that cold here in the valley. Now today I am supposed to go hiking with my brother but it has been raining all night. Maybe we will grab our skiis and boards instead and catch a couple of runs! I've never gone boarding when the maples were still red. Should be pretty amazing.

BRCA is something that is always on my mind but I always feel better when I am doing "normal" things. Stuff that doesn't involve tods or cancer research. I even enjoy going to the library or store and having to ask someone for help finding something that is not cancer related. I feel like I am normal again. So screw cancer today. I am going to join the other snow rats pulling some free runs.

I did go, without my bro who didn't feel like it. I only took one run because remember, I'm lazy and the lifts aren't open yet. It was great! Snow quality was better than closing day last March but the coverage is pretty bare. Less than a foot so hitting rocks and stuff on the way down but only one small scratch on the board. The drive up the canyon was very pretty and felt like an east coast fall day. Then all of a sudden it felt like Christmas! Hiked up, did my one run then went home to curl up on the couch and watch football for the rest of the night. What a great day:)

Friday, October 2, 2009

want syrup for that waffle?

Some brca women know what they are going to do and stick with it. Others think they know what to do and then aren't so sure. We like to call it the waffle. Some compare it to having an angel and devil on your shoulder. You listen to whomever is screaming at you the loudest. Right now the devil is yelling at me as I am waiting for the results of my mri. He's telling me that I waited too long and my boobs will be full of cancer. That it will be too close to my nipple, ruining my chance for nipple sparing surgery. That I will have to have lymph nodes removed increasing my chance for lymphedema. That not only will I not be able to snowboard this winter, it could be weeks before I can even play Shaun White on my wii. That I will end up having to have both treatment and surgery when I really don't want to do any of it.

But then there is the angel. I know she will jump right in when my mri results come back all clear. I will feel better. Think it will be ok to wait some more. Maybe finally go look for a job. Go buy a ski pass. Get on with my life. Problem is, I don't trust the angel. I am usually a positive person and I like to root for the underdogs. But when it comes to illness for me and my loved ones, the angel has let me down 9 times out of 10.

My dw told me a couple of weeks ago that I already know what I am going to do. She is probably right. But it is like I am going skydiving and I just can't make myself jump out of the plane.

Thursday, October 1, 2009

exsqueeze me

It is October. Goodbye to September and Ovarian Cancer awareness month and hello to Breast Cancer awareness month. You may have noticed all the pink stuff in the stores. Pink ribbon cookie cutters and water bottles. Pink m&ms. Pink stuff you can buy to help the cause (sometimes just to help the manufacturer) and make you feel like you are helping out your cancer friends. But this month is not about buying stuff. It is about you and raising your awareness about your risk. About 200,000 people will be diagnosed with breast cancer this year and most of them are not mutants. Do you do a self breast exam every month? I never did. Couldn't be bothered. Now I say goodnight to my boobs every nite with a quick exam and good morning every day in the shower. Overkill? Yes! Paranoia? No, just trying to burn them in my memory in case I cut them off. If you don't like to do a sbe why don't you find someone that is willing to do it for you? Could be fun!

Have you had your mammogram this year? Before I got mine I didn't know what to expect. I heard they stick them in some machine and flatten them like pancakes. Some friends said there was no pain at all, while others said it hurt like a bitch and they would never do it again. So I went in and found out first hand. I think they squeezed each breast twice to get two different views. Didn't last very long and I wasn't in pain. I asked the tech if they have new machines because my sis said it hurt a lot. She said no but some techs are more aggressive than others and maybe my sis's tech was mean. I've had a ton of mammograms now. I had to go back in when they found my calcifications and take at least a dozen more so they could get a clearer picture. It was in a hard spot so they had to twist and turn and tug and pull. The tech was afraid I'd be all bruised the next day. But I wasn't. I got to do another kind of mammo for my biopsy. This was on a table with holes cut out for your boobs to hang out of. They use the mammo to guide the needle to the right spot. That mammo wasn't painful either. Then I had to go into the other room with the normal mammo machine and take some more. Even as my biopsy site started bleeding down my chest, it didn't hurt. Well, I did have some drugs in me that time:) They used yet a third before my lumpectomy. I didn't actually have a lump so I needed to sit in front of this machine while they took a mammo and placed a guide wire in my boob to help the surgeon. That mammo didn't hurt either. Point is: if you are afraid of pain, speak up. Tell them not to squeeze too hard. They found mine without making me scream. If they don't listen to you, go somewhere else next year. Just get it done.

hello, my name is Janine and I am a recovering liar

I like fibbing and practical jokes and trying to pull one over on you. Some people call this lying. I think it usually is harmless and amusing and call it fibbing instead. I used to work at a place that would get one cake each month to celebrate everyone who had a bday that month. Sometimes we got it on the first, sometimes later that week. One April Fools Day I told the receptionist that the cake had been delivered and would she please make an announcement that it was in the break room. A few minutes went by and then the receptionist called me asking where the cake was. Everyone was running around looking for it! Come on, that shit is funny. It's not really lying.

But sometimes I do lie. I like to lie to my tods. It started when I was 16. The docs always want you to come in with a list of your blood sugar numbers. I always hated that. For one thing, I'm lazy and it takes effort to write it all down. For another, I'm lazy and it takes an effort to test all the time. And back then it took about 3 minutes to test instead of the 5 seconds it takes now. And my numbers were not always very good. So the nite before each appt, I would look at my numbers, write down the good ones, change the bad ones and make up some where I hadn't even tested. It was a dumb lie because they have a special blood test that shows what your control was for the last 3 months, but I was new at lying so I kept practicing. In addition to lying to my tods I became a serial appt breaker. The docs like diabetics to come in every 3 or 4 months so they can keep an eye on you. I don't get much out of these visits so I try and go as little as possible. I make the appt and about a week before I will cancel it and tell them I will reschedule later. I do this as many times as possible until they will no longer refill my scripts. Sometimes I can get away with only seeing the doc once a year. Well, I've moved and my new doc is very wise and will be a challenge. I needed to get a doc fairly quickly because Utah requires certain mutants to have a doc sign off before they let you get a drivers license. So I reluctantly made my way to the office. Sure she'd sign off on it, after I had some blood tests and came back for another visit. Oh, she had me by the balls and she knew it! She was good. So May comes around, I've already seen this doc twice this year and now she is telling me I need to come in again if I want my scripts renewed. I hate that! I resent going in for that. Can't they just give me scripts with infinity refills?? So I talked to the medical assistant and set up the appt, and she tells me they will go ahead and send in the refills in the meantime. Oh, you little sweet naive M.A.! I got you right where I want you! But something strange happened. Instead of canceling my appt, I thought well I haven't had a work up in a couple of years. Might as well get my 20 bucks worth and get the whole pap crap and all that jazz. My breast exam didn't turn up any worries because you couldn't feel the cancer in there. But we did review my records and determined it was time for my first mammogram. I walked out of there with the order for the test and threw it on the pile with the rest of my junk. I remembered it about a month later and decided to get it done. The tods like to say I saved my life by getting the mammo. I like to think mutant one helped out mutant three before it was too late.

Lesson learned about lying? All I can say is that I'm working on it. I have since lied to my onc. He asked me if I knew how to do a self breast exam (sbe) and I said yes as I covered up my notes with the question how do I know if I'm doing it right? Maybe because he is a guy, and old enough to be my father, but I didn't want him teaching me how. I will leave that to my female tods. In the meantime, there are some good instructions on youtube. I've also lied to my dear general surgeon. She has been very supportive of my immediate choice of surveillance over prophylactic surgery although I can see the worry in her eyes. She says surv is ok as long as I am willing to go to the tods all the time for all the tests, etc. I said, no problem. I have to go in all the time anyway, I am used to it! My dw was sitting there and was kind enough not to bust me. But I am doing better and have taken the initiative to see all kinds of docs. I like to think I am turning over a new leaf and maybe now mutant three can help out mutant one.