Monday, November 30, 2009

thoughts and inspirations

I started keeping a journal this past September. In the back, I jot down quotes that hit close to my heart or just give me some inspiration or food for thought. Here are some of them:

Sometimes you have to do things you don't like. (me)

Cut the bitches off! (mj)

I am strong but not brave! I will need some pushing to cut the bitches off! (me)

Go fuck yourself. (from I'm a mutant blog)

I'm fucked up. I think I need to see a psychiatrist. (mims)

Patron and lime is mighty fine! (me)

Think she'll get back to normal? Yes, but it won't be the old normal. (private practice)

Remember, you truly have friends that love and care about you everywhere you have been. (sm)

A wise person is one who listens to advice. (kenyan proverb)

How about none of the above, mother fucker! (from goodbye to boobs blog on breast reconstruction options)

I be thinking about the way his life was all crazy. And my life is crazy. But we ain't trying to let the sad feelings get us down. We ain't trying to give up. (from  After Tupac and D Foster by Jacqueline Woodson)

I cherish this scar, a line that suggests my beginning and my end, a line that suggests I take it seriously, which I do. I miss it, but I want to tell all the women that we are still beautiful, we are still powerful, we are still sexy, and we are still here. (susan miller from My Left Breast)

Saturday, November 28, 2009

THIS is why we moved here

A lot of people ask us why we moved here (utah). I get that question every time I move. Sometimes they are just curious and sometimes they are incredulous. Like when we moved to rochester, ny from the bay area in cali. People in rochester thought we were crazy for leaving cali. But we wanted to spend some time there with my family and get to know the nieces and nephew. That time was invaluable and something we would never trade. Now when we decided to move to utah, friends were incredulous but the utahns were just curious. Why utah? Why not! DW had just finished school and work was scarce in ny. So we decided which states we would want to live in and something came up in utah. My brother lives here and we had visited several times and seen the beauty and I was pretty excited at the opportunity to be here awhile. I like to move around. I think of it as an extended vacation. I get a chance to spend some time in a new place and explore and see as much as possible. Usually I only have a couple weeks off from work each year and that is not nearly enough time to travel and see everything that I want.

I talk a lot about snowboarding, and the slopes here are just minutes away, but the real reason I was so excited to move here is southern utah. It is so beautiful. I love the rocks and all the contrasting colors. Green, blue, orange, red, white. It is only a few hours away and it is an outdoor paradise. You can do almost anything there. Mt biking, hiking, rafting, skydiving, horseback riding and for those that like motorized sports, those options are endless too. I snuck away to bryce a couple of weeks ago but dw has not been south since the end of June/beginning of July when my whole bc and brca drama was unfolding. That's about 5 f*ing months. That's crazy. When we moved here we resolved to go at least once a month. I feel bad that it has been that long. We were glued here for July what with all the tests and surgeries and then August was full of recuperation and my great escape to ny. But that still leaves 3 months. 3 mostly wasted months except for two great weddings we went to. So after a wonderful thanksgiving spent with my brother and his dw here, we headed south to moab and Arches National Park. This is one of dw's favorite parks because she loves the formations. It is also a pretty good place to go in the winter because they don't get a lot of snow, the crowds are much smaller and you don't have to worry about the 100 degree weather like you do in the summer. We did a really cool 3 hour hike that we haven't done before and saw some amazing rock fins and did a little scrambling on the rocks as well. Saw some arches too:) We haven't gone hiking in a really long time so it was nice to reconnect a bit with mother nature. I felt myself really smiling (inside and out) for the first time in months. We both feel so refreshed. Only one night away but it felt like a vacation. We will have to plan another trip between now and my surgery in February.

I have to give a shout out to my fellow blogger, Teri (Teri's Blip in the Universe link on the left). We were going to meet this weekend because she is in utah visiting her brother but some health stuff got in the way. I hope everything turns out ok and you are back on your feet soon!

Wednesday, November 25, 2009

giving thanks

One would think with all the whining I have done on this blog that I have nothing to be thankful for! But that is far from the truth. I'm just going thru a rough patch in my life but I do have a lot to be thankful for and I do consider myself to be one of the lucky ones. I'm going to be mostly off line the next few days so thought I'd get my thanksgiving post in early. That reminds me of a funny story! Back when my grandmother was still alive I used to be a good girl and send her letters. I would get a head start sometimes in order to get them out in a timely fashion. One holiday I cheated a little and wrote something like " hey grandma, I had a really good easter, hope you did too!" My roommate saw it and busted on me good since easter had not arrived yet. But hey, what grandma didn't know didn't hurt her and at least I got my letter out quickly.

Things I am thankful for: my dw of course! She is always here for me and helps put a smile on my face. She puts up with everything I throw at her, even the indoor snowball fight I started the other night:0 My family. They support me no matter what and I love them and miss them. And I'm thankful to be an Aunt cuz those kids are such a joy to watch grow up. I'm thankful that I have a big brother here in Utah that is fun to hang out with (and his dw). I didn't hang out with him as much growing up cuz he was always a couple grades ahead of me so it is really nice to connect with him now as adults. My dw's families. They are all so good to us and support our relationship and help us out in so many ways. The toughest part of all these families is that no one lives in the same state! It is hard to be apart as we miss everyone so much. I am also thankful for all our friends. Life is so much more fun with all of them in our lives and it is always a pleasure catching up with them. And despite feeling my age lately, I am still physically able to do pretty much anything I set my mind to so there is that to be thankful for. I am very thankful to have been raised by parents who instilled in me the art of living in the moment and not putting off everything til retirement. And all those cross-country roadtrips to visit relatives gave me my spirit of wanderlust. And last but not least, I'm thankful for my health. For real! You think I'm joking but I'm not. My tods all say that I am in good health! My mutations have not gotten the best of me. My body is still kicking ass, so happy thanksgiving to me:) And I hope you have a Happy Thanksgiving as well.

Tuesday, November 24, 2009

what you can do this Thanksgiving

Many people spend the holidays with family, whether they like it or not. Old stories are told over again. Everyone knows about the crazy sister who dances on tables at weddings or the time their cousin got wasted before his wedding started or their mom got arrested for running away from home. But maybe you should spend this thanksgiving learning the important stuff. You may have a copy of your family tree tucked away somewhere but do you know your family history? I am finding out how important it is to know what lurks behind those closet doors. I'm not just talking about cancer and I'm not just talking to brca+ people. This applies to all of you. Start gathering information about your families. Start with your siblings and parents. What ails them? Is it as simple as a hernia? Write it down. Include the age at onset and what was done to correct it. Diabetes, asthma, migraines, macular degeneration, high blood pressure, age at death, kidney stones etc. Colonoscopys? Your parents have probably all had one by now. Find out if they've had any polyps, how many and what kind, what age found and write it down. Then move on to your extended family and go as far back as possible. Keep a chart and update it as new things occur. Somehow share this with your extended family. Maybe the family history should be something you include every year with that holiday card you send out to the family.

Now that you have this information take a look at it. Take it to your doctor and actually discuss it with her/him. I always fill out the family history when I see a new doc (what I knew of it) but never took the time to talk about it with them and they never brought it up. My appointments were strictly focused on the task at hand. At times I wondered what my risks were since I knew there were cancers on both sides of my family but I guess I figured there was nothing I could do about it but wait it out until I got something. Often times there are a lot of measures you can take for what runs in your family. Very important to see your eye dr every year if you have things like macular degeneration in the family. It is so much better to catch those things early and start treatment. And the colon polyps. Turns out mine was tubular adenoma. One was nothing but the larger one (12mm) was precancerous and who knows what it would have been in 9 years if I had waited until 50 like the general population to get my first colonoscopy. BRCA saved my butt, literally, on that one and quite frankly on my health in general. It is a wake up call to start acting my age and taking charge of my health. Don't wait for something to happen to you or for your doctor to ask you the right question. Take the time to learn your history and take some proactive measures.

Monday, November 23, 2009

today's snow report

11 inches overnight at Brighton Resort with more on the way today! And we got a few inches here in the valley as you can see in the picture. What a glorious day:) Looks like this weekend will be a great time to go snowboarding.

I've been doing a lot of thinking over the weekend while I await the results of my polyp biopsy. I'm pretty sure that it is going to be ok but it does make me wonder what else is going on inside my body. At 41 years old there is no way I should have breast cancer or colon polyps, but I do. Why are my pancreas and thyroid broken? I don't  know. What else is lurking beneath the surface? I wish I knew. Yes, I really wish I could tell if anything else is wrong because so far everything has been fixable. I used to think I wouldn't want to know but now I feel it is a blessing to have a chance to fix it. Go ahead, take my boobs please. I don't want them anymore. And you can have my ovaries too. I am figuring out right now when I can get that scheduled. I know many people who should be tested for brca but haven't. I can't understand what they are waiting for. Why not do something when you have the chance. If not for yourself, then what about your loved ones? Don't you think they'd like to grow old with you?

Friday, November 20, 2009

feed me!!!

I am happily eating again! Went from the hospital to five guys for a bacon cheeseburger and fries and don't forget the free peanuts while you wait. And the fry sauce! I have only seen fry sauce here in utah. Basically it is ketchup and mayo mixed together sometimes with some relish. And I had to have a soda even though I am still a little gassy from my colonoscopy this morning but sometimes the pain is worth it. All in all, this whole procedure is not a big deal. Really more of an annoyance than anything else. The day before is the worst part, not being able to eat what you want but I wasn't as hungry as I thought I'd be. It does affect your mental capacity a little though, not eating. So I would recommend taking that day easy, especially after noon. That is when I started feeling cold and a little out of it. Didn't really need the toilet til about 4 and then once you start drinking the mix, you pretty much forget about food and keep running into the bathroom. The effects are pretty much done by bedtime but I did have to get up at 4:30 to drink the rest of the mix. I had to check in an hour before my procedure for all the usual paperwork. Keep meaning to get that living will thing filled out but haven't done it yet. I have that here somewhere. The nurse came and got us (me and dw) and she looked like a mean old nurse but she turned out really nice and funny. She also got my iv in with one poke. Always get a nurse to do your iv whenever possible, the drs suck at it! Had to sit there a little while cuz they do these colonoscopys almost like a drive thru, one every half hour and they were a little behind (get it?)! I was cold so dw found me another blanket. They did let me keep my socks on and my shirt underneath my gown so that was  nice. I wasn't very nervous but it was feeling a little too much like surgery all prepped up with the blood pressure cuff and iv drip. I was moved into this really tiny operating room and got the heart monitor stuff hooked up and assumed the position - lying sideways, butt sticking out. They were kind enough to put me out before they exposed me. And it was over in about half an hour. Wheeled me back over to dw and she said I looked really clear headed. Then when I asked her the same questions over again within seconds she decided I was a little loopy! Just a little. It was like my mouth was faster than my brain. I was about to ask her for the third time what time it was but then I said "it's 9:39" and she said not anymore:) Then the doc came in and showed me my pics and said they found two polyps. I'm a little shocked. I was not expecting anything. Just did this to cover my bases. She told me not to spend the weekend worrying about it because she doesn't think it looks like cancer. I will get the results in about a week.

So just chilling here with dw, listening to christmas music! It is a nice, gloomy day. Perfect for lounging around and reading. Going to go find that leftover cookie dough from Wednesday nite. And oh yeah, did not lose one single ounce from this whole fast and shit thing. Guess I drank too many fluids. Oh well

Thursday, November 19, 2009

jello, it's whats for dinner

Ah yes, today is a fasting day for me. Sort of. I am allowed to eat jello. I am part way thru my second batch and have a third cooling in the fridge. I am hungry and a little light-headed as I try and keep my blood sugars up. Mutant 1 doesn't like this fasting shit but she'll get over it. I've never had to do a fast this extreme before. My surgeries are always scheduled in the morning so I only have to fast for a little while because of my special diabetic status. I am doing ok now but wonder how hungry I will feel tomorrow morning. Or will my stomach be so upset I won't want to eat anyway? I can't wait to weigh myself in the morning and see how much shit I got rid of. Took the first of the diuretics a couple of hours ago but nothing is happening yet. Took a nice walk with the dog in case I can't go out later. I take the good stuff at dinner and then I guess all shit will break lose:) Please excuse me, I love the potty humor! Pigged out last nite and got a tube of cookie dough. Figured it wouldn't stay in my body too long so what the heck. Now I wish I had finished it off cuz the leftovers keep taunting me every time I go to the fridge.

Didn't go snowboarding this week after all. I decided to do the root canal on Wednesday on the off chance that someone might call me to start working come Monday. It wasn't too bad. Seemed like it took forever. The whole thing was about an hour and they were in my mouth for about 40 minutes. I wasn't in any pain and I only took a couple of tylenol right after just in case. It doesn't hurt any more now than it did before. And much less than last week. They said it should be ok in 2-3 days if everything goes well. There is a chance that the infection won't clear up but usually the root canal works. I hope to be eating on both sides of my mouth by Thanksgiving! I'm glad I did it this week. That leaves next week doc free. Looking forward to chilling with dw for the long weekend and spending thanksgiving with my bro and sis in law. Maybe we will hit the snow sometime that weekend. We decided not to go to vegas for thanksgiving. I had been planning on it since last year. I wanted to go there for the auto show which is over that weekend but I'm just not into it anymore. I would rather stay here and relax. Maybe I'll plan a trip to detroit sometime. That is where the best car show is anyway.

Monday, November 16, 2009

pity party

Saw the endodontic today. The newest member of my team of docs. I went in there knowing that I would probably need a root canal but left there anyway upset with the fact that I am now scheduled for it next Monday. My tooth, which was not infected 10 days ago, now is and the nerves are dying. I could have had it fixed today but I was worried about what meds I might need since I have a colonoscopy this Friday and can't take certain drugs. That is my other new member, the gastroenterologist doc. GI tod recommends I get this done now rather than wait until I'm 50 since I have colon cancer history on my non-mutant side of the family. The procedure is supposed to be easy it is just the prep that will be a pain in the ass. Not looking forward to not being able to eat all day Thursday and spending my evening on the throne.

Over the summer, after I finished with my two surgeries, dw asked my general surgeon about a gyn/onc referral and getting my vaginal ultrasound scheduled. GS asked me if I was ready for that. I asked why, does it hurt? No, it doesn't. Now I understand what she meant by being ready. All of this stuff happening at the same time is a little overwhelming. Every time I turn the corner something else is going on. Hardly a week has gone by that I haven't seen some doc or someone related to this whole mess. My team of docs has developed from a volleyball team to a soccer team. How do I keep it from morphing into a football team? The funny thing is I don't even like going to the doc and now I feel like I know every fucking doc in utah.

So I'm having a bad day. I had such a great week last week. In fact, even yesterday I didn't have anything to bitch about in my journal. I think I will spoil myself and go snowboarding this week, sometime before my cleansing. The slopes have just opened and even though not all the runs are open yet I think I will splurge and use one of my tickets.

Saturday, November 14, 2009

reality tv

It's funny how you don't really notice things until they apply to you. Then those things pop up everywhere. I am watching private practice and so many things in this one episode hit close to home. There is a young woman dying of ovarian cancer. A dwarf couple looking to use selective embryo processing so they can have a dwarf child. A sexologist passing out toys. A young woman undergoing shock therapy.

The woman with ovarian cancer scares me. She ends up dying on this episode. She looks pretty young. Maybe in her 30s or 40s. They don't mention if she has brca but I would assume so. Most people don't get it that young. I haven't put much thought to when I will have my ovaries removed. My main concern is the boobs since I had to choose some sort of treatment for my cancer. But it is something that I need to address soon. I am reading a blog by a young woman, maybe 33, who already had her boobs removed and now has just finished her chemo treatments for ovarian cancer. She had been doing all the surveillance tests but it still did not get detected until it was pretty serious. She is so young. You just can't tell when it will strike.

The dwarf couple wishes to have a baby that looks like them. They want a dwarf child and today's technology allows for testing the embryos for mutations. One doc has to be convinced to go along with their wishes since she doesn't believe in tampering with the natural process. But in the end, it was found that all the embryos that had the dwarf mutation also carried a 40% chance of cancer mutation. So that doc refused to help them. This is a situation playing out among known brca+ women who are looking to get pregnant. Some are choosing to select embryo that don't carry the mutation while others leave it to chance. What would I do? That's not really a question one can really answer until you are faced with it. I don't think I would want to have kids if I thought I could pass on mutant 1 and 3. Would I want to select an embryo that would ensure my baby would have mutant 2? Probably not. I think I would leave that to chance. But I don't need to worry about this. I don't want kids and if my dw ever convinces me otherwise, she can try and have one. After all, she is younger and although her family history isn't perfect, it is better than mine.

Sex toys? What's that got to do with my life?;) I was just discussing sex toys cuz someone I know is having her ovaries removed soon and she is single. From what I've read, they say that your sex drive is decreased after surgery and dryness could also become a problem. They say 'use it or lose it.' In other words, the more sex you have the less problems you will have with menopause. So, yes, sex toys would be a nice present for someone getting an ooph! And a sexologist? Well of course I am concerned about what my sex life might turn into after the slice and gut. My bcsw told me that if my stuff is broken after surgery, there are people that can help fix it. I'm hoping not to have any problems but it is reassuring that there is help out there.

Electric shock therapy. Funny how many topics they stuffed into this one episode. In this case, a woman had been suffering from severe depression for over a year and nothing else was working so they shocked the happiness into her. I don't know anyone that had est, but back in the day parents used to drag their kids in for this to try and shock the gay out of them. It used to be considered a mental illness. I don't think est was ever found to be a good treatment for changing gays. It may have caused them to be better at lying about who they are, or caused more runaways, but I don't think it really changed who they fell in love with.

Thursday, November 12, 2009

is this what growing old feels like?

Wanted to write a nice happy post today because mentally, I am feeling great! I realized yesterday afternoon that I had spent most of the morning not really thinking about brca! That's a first for me. It was a nice morning. DW had the day off for Veterans Day so I made us some pancakes and we relaxed a bit before we headed to the gym. Got to do one of our harder workouts that is usually reserved for the weekends. But had to cut it a little short because of my damn toothache. I have had problems with this tooth since around June 2008. That's when my dentist took out my old filling and replaced it. Didn't feel good after that and I had her take a look at it. She filed the new filling down a bit but seemed to give me a little attitude that nothing was wrong and why was I complaining. So even though it still hurt a little I never went back. I was really busy anyway and Aleve did the trick. When I moved I got a new dentist and the tooth was still hurting, a lot. My new dentist found a crack in the tooth and went ahead and put a crown on it. That relieved the pain for about 7 months. But it came back in August. Not sure why. My root is way up in my sinuses so maybe whatever breathing apparatus they used on me during my surgeries has irritated it. The pain was doable for awhile but now nothing seems to help. I have been taking tylenol and aleve but they don't seem to work at all. I saw the dentist on Friday and there is no infection. He said the pain could possibly go away again but if I can't deal with it I will need a root canal. On Friday, I could bite down without pain. Today, pain with every bite. And not just pain with eating. It is random. Could feel fine one minute then the pain starts up again. Yesterday I had to resort to something stronger than over the counter meds and still had some pain. I can't just sit around all day doped up. Can't drive on the meds and afraid to go too far from home off the meds as the pain can be intense. So looks like the root canal is calling my name.

I've never worried about growing old before. It was something I just never planned on. As a kid, the docs used to threaten me to try and get me to control my diabetes better. They'd say if you don't start doing this and don't stop doing that you won't live very long. Well I didn't do what they'd say so I just figured I wouldn't live long. And to a teenager, 30 seems like a ripe old age so that is the age I planned my life around. I had a list of things I wanted to accomplish by 30 and I did almost everything on that list and then some. Still haven't made it to Australia though! As I got closer to 30 I started to wonder if I was really going to die. I was seemingly healthy and had no problems yet. But still waited until my birthday before believing that I was going to make it. I was never afraid of death and it didn't hold me back in any way, except I never saw the use for a 401k or savings. Funny thing is I never discussed this with wondertwin (a fellow mutant 1) but turns out she also believed she would never make it past 30. We did have the same docs so that stands to reason.

Age doesn't scare me. I didn't cringe at turning 40. I view each birthday as 'cake.' To me, each year is another year that I thought would never happen. I enjoy my life and have never felt my age. Until now! Well, I guess it started at age 39. That's when my thumb gave out on me and I needed trigger thumb surgery. And my hands are not as strong as they used to be. Mutant 1 causes some joint issues. Then I got cancer and discovered I am a brca mutant. Now I need a root canal. Now I feel old. I feel like I have to make compromises because of my body. I used to be afraid of old people when I was young. Maybe I was just afraid to become one of them. I don't want to grow old gracefully. I want to be peter pan.

Tuesday, November 10, 2009

hey bc you're so fine, you're so fine you blow my mind

BC rocks! Bryce Canyon that is. Took a day off from work sitting around on the computer yesterday and headed to one of my favorite parks. It is hard to choose a fav utah park cuz they are all so fucking awesome. Each is special in its own way and they are all so different. But when you need smack in the face, jaw-dropping vistas, Bryce is the place to go. I remember the first time I went there. My brother had just moved here and wondertwin's college buddy lived here as well. We paid them both a visit and cb took us all to bryce. I had never seen anything like it. I felt like I was on another planet. I couldn't believe something like that existed. I have been to bryce countless times now. It is still amazing and something that I will never tire of. I love to bring visitors there, especially first timers. You can feel the awe and joy oozing from their bodies.
Here is a montage of bc trips, past and present.

Sunday, November 8, 2009

trying to find the sunny side of life

That's dw with our discount Brighton ski tickets! Let the winter begin:) I am so looking forward to snowboarding this winter. When you are making your way down the slope it is very difficult for your mind to wander to things such as brca. You mostly just concentrate on what is there in front of you. The conditions, your  next turn, the obstacles in front of you, trying to beat your friends down the mountain. At the same time your mind is screaming whoo hooo! It is a rush as you push yourself past your comfort zone. Taking on a little more speed than you may be able to handle, trying that double black run, eying that jump even as you realize you will crash and burn. When the sun is shining and the snow is deep, you can't help but feel good. And those awesome cookies are always waiting for you at the lodge:)

I have been struggling with this idea of happiness. Back in September if any peace or happiness slipped into my day I would really pay for it the next day. I would be angry with myself for allowing this and just be miserable. I didn't want any good moments. I felt like I was betraying myself if I felt good. I think I equate happiness with acceptance and I equate acceptance with giving up. I want the researchers to find me a better answer. Like make an off switch so that I can turn off this mutation. I understand that this will not happen anytime soon. I've heard they really aren't working on that at all. I think they are just working on more preventative drugs. Stuff like tamoxifen, but better.

I find that happiness has been slipping back in my life whether I like it or not. I'm not as depressed as I once was. Some days I don't even cry. I still feel conflicted though. I haven't sought out happiness. I haven't planned any fun trips and I don't have the motivation to do so. I still don't want to accept this happiness. My social worker says that it is ok to be happy with life and not be happy with brca at the same time. I understand what she is saying but it still doesn't seem right. But I think I should work on it. I can't turn into some grumpy bitch. It's a hard process, learning to be happy again. You remember what it was like, you know how to do it, it is just a matter of retraining your brain.

Saturday, November 7, 2009

the thrill of the cut

Watching an epidode of grey's anatomy right now and it actually has my attention! I have had a bit of adhd since this whole brca stuff started but this episode is very interesting. It is about a spinal cord tumor getting removed through micro-surgery. A bit more difficult than my breast surgery will be but it has some similarities. I was wondering how they would be able to operate while looking through a microscope. I was picturing the kind of microscope that we used in high school. The kind that just sits on a desk. So it was cool to get an idea of what the OR might look like. It has a huge microscope hanging from the ceiling that the surgeon looks through while her hands are busy on the body. It takes some really good hand-eye coordination. It really hammers home the importance of choosing the best, most experienced surgeons! This episode also dealt with the issue of how surgeons handle really long surgeries and what they do about bathroom breaks, food and hydration. This is one of my concerns about if I should choose to stay in utah and go with the longer, cheaper surgery. I asked the doc if he took breaks, since the surgery would be about 12 hours. He said he takes a bathroom break. I asked him what about food? He said he has a powerbar. He looks like he is in pretty good shape but it makes me a little uneasy to have someone working on me that long. And I imagine the anesthesiologist will be relieved several times, which is good and bad. Anytime you hand me over to someone else there is a chance for miscommunication.

It would be great if we could do the surgery here at home. No flights or hotel to pay for. I would get to stay in the comfort of my home and have real food prepared for me instead of recuperating in a hotel for a week and eating take out. DW wouldn't have to sit by my side alone during my 4 or 5 days at the hospital. I would have just a short drive home instead of a couple of flights across the country with drains hanging out of my chest. And it would cost almost nothing. We could keep the insurance we really like. But we have pretty much decided that we will go for it. We will change our insurance so that we are able to go to the best surgeon. DW does not want me to be under the knife for 12 hours. And I want the best boobs I can get. I don't just want them to look nice, I want to get the most feeling out of them that is possible. I don't want any regrets so I think it is worth it to seek out the best surgeon. We will go get me some good boobs and worry about paying for them after it is all over with.

Friday, November 6, 2009

second class citizen: rants from mutant 2

Last November was oh so bittersweet. So exciting and groundbreaking to see Obama get elected. But waking up after his election to the news that Prop 8 passed was something else. Maybe you woke up upset because your man didn't win the election and you are disappointed and maybe even depressed. But that is politics. You win some, you lose some. Prop 8 is personal. This is affirmation that people out there don't like us (the gays) and might even hate us. That my almost 9 years together with dw is meaningless to them and perhaps even disgusting. That if I should find myself in a bad situation in the wrong hospital, in the wrong state, that dw may not even be allowed to see me. They treat us like we are not human, not as worthy as the 'straight' population. But last I checked, I bleed, I hurt, I pay taxes and I sure as hell know how to cry. How did it feel that morning? Imagine waking up on your birthday, sun shining, your loved one brings you breakfast in bed but instead of handing you the tray, he/she punches you in the gut instead. You are shocked, speechless, tears come to your eyes, you don't know what you did wrong. You wish you could pull the covers over your eyes and never get out of bed. It is painful and bewildering. Yet you have to keep going, the world doesn't stop for you. And we do keep trying. We persevere. We aren't going away. Hitler tried to get rid of us, but we are still here. We even use the pink triangle he made the gays wear, as a symbol of pride. 31 states have put the gay marriage vote to the public and 31 states have denied us the right to get married and all the rights that come along with it. Five states have legalized gay marriage: Massachusetts, Vermont, New Hampshire, Connecticut and Iowa. But all did so through legislation or court rulings, not by popular vote. Prop 8 sucked but it has awakened a rebirth of protests and action. Maybe the next Harvey Milk has been born.

I finally had this sticker made. Something I have been meaning to do for the last year. I wish I had the money to make thousands and pass them out but feel free to make your own if you want one. It reads as 'no hate'. Of course it is a play on 'vote no for prop 8' but is has a secondary meaning as well. Hate of anyone is wrong but we all know the world is full of so many kinds of hate. Lets talk about President Obama. I was very worried that he would never even make it alive to election day. He has so many haters out there. Whether you voted for him or not, whether he ends up doing a good job or not, I hope you can see that he has done so much for the United States just by getting elected. We still struggle with our ugly past and people are not treated equally here. His inauguration was crazy. Such an historic moment. I can picture years from now, the older generation telling of the day they saw Obama take the oath of office, tears streaming down their faces. Their grandkids look at them and say "what's the big deal? Anyone can be president." Hope and Change are here.

Thursday, November 5, 2009

the art of saying thanks

I've been learning a lot lately. Some things I wish I had no need to know but the rest is a good consolation prize. Don't mistake me for one of those people that are "so happy I got cancer, it taught me so much" cuz that is not me! But you need to look for good things where you can find them.

I once had a boss that was very good at saying thank you. He is my favorite boss to date. I'll call him Scott, cuz that's his name. When he first came on the scene, we didn't know what to make of him. He had a poker face and we couldn't read him very well. When he would thank me and my coworkers, we wondered what he was up to. Was he being sarcastic? Why was he thanking us when we were just doing what we were supposed to do? Clearly, we weren't used to bosses actually appreciating us, that is kinda sad. Eventually we learned how to read him and we could see his sincerity. Nothing wrong with thanking someone even if it is for something that they should be doing.

Those of you who are following my blog know that I am learning how to ask for help. And of course, I have also been falling into a pile of help from my tods because of the whole brca situation. With all of this help I have found myself learning how to express my thanks and appreciation. I have found that it is not easy to express my thanks. I can say 'thank you' as I walk out the door but that is not really what I am thinking. 'Thank you' doesn't really describe what I mean. What I am trying to say is I appreciate you. I understand how many hours you work and how many patients you see. Thank you for listening to my concerns and being concerned with my well being. Thanks for those seminars I know you attend that interrupt your personal life. Thank you for treating me like an individual and showing me some compassion. But none of that comes out of my mouth. Not sure why. I guess I have lots more tods to practice with though.

And then there are our friends and family. Sometimes it is easy to take them for granted. Yes, we expect them to come through for us in our hour of need but that doesn't mean we can't show our appreciation. I know that me and dw have been in your thoughts through all of this and we appreciate that. It is nice to feel the caring and hear the words of support. It was really nice to escape to ny for two weeks after my surgeries and just open up my eyes to other people's problems and forget my own. That sounds weird! And I don't mean that I'm happy that you all have problems! Yes, it was nice that I wasn't the sole focus. I saw a friend with a broken heart, one with a broken foot, families with the normal kid drama and whatnot. Yet despite life happening to everyone, there was still time and love for me and dw. We thank you for that and appreciate having you in our lives and please know that we are always there for you, anytime.

Wednesday, November 4, 2009

when the moon hits your eye like a big pizza pie...ª

If you haven't noticed by now, I love nature. I love to be outside, it awakens my visual senses. I can sit and stare at the ocean, the mountains, the grass blowing in the wind for hours. I love the colors, the sounds, the feel of the air. Mother Nature has done a good job. Anyone notice the moon these past few days? Hard not to appreciate a full moon. It is beautiful, as well as helpful, casting extra light. When I look at the moon, especially a full moon, I think of all my loved ones that are far away. I think how cool is it that someone I know, miles away, could be looking at the same exact thing as me at this very moment.


Tuesday, November 3, 2009

use your outside voice

My dog is usually content to stay in bed when dw gets up at 4 in the morning for work and waits for me to get up later and take care of her. But this morning the dog knocked on my door and she asked me to please take her out cuz she needed to poop. While she doesn't speak english, she does know how to get her message across and she is never afraid to do so. I should take a lesson from this dog.

This is a tale of two surgeries, things left unsaid and lessons learned for next surgery. Warning: boob shots below

I went into my first lumpectomy not very well informed. I was a bit in shock still and hadn't done a lot of research. And I still hadn't stumbled upon FORCE, a great website for the brca community, full of all kinds of information. I didn't know what to expect and didn't really know what questions to ask. There is plenty of opportunity to speak up. Before surgery I was visited by a nurse for all the pre-op questions. They are basically running through your history and making sure they have the right info and the right patient. Then you will be visited by the surgeon for any last minute questions and they may briefly explain what they are about to do. Then the anesthesiologist comes in and away you go. Kiss your loved one goodbye as they go sit it out in the waiting room.

Once in the operating room, I was introduced to the rest of the team and things got down to business. They ask you again what surgery you are there for. You should be asked this every step along the way. I was not worried at this point that they would not know which boob to work on. I had a wire sticking out of it, so hard not to miss. Pretty funny since some brca women feel like their boobs are 'ticking time bombs' and mine actually looked like one. The first thing they do in the OR is try and knock you out. The anesthesiologist takes a few pokes at me and tells me I am his challenge of the month. This is reassuring as he will be in control of my life for the next couple of hours. But I understand that even when I am not dehydrated (you can't drink anything after midnite the nite before surgery) my veins are not easy to hit. He must have found a good vein cuz I ask him if it is in as I start to feel woozy. I see hands reaching for my glasses and I am out.

When I woke up, I knew exactly where I was, in the recovery room at the hospital. Yet for a second I was excited because I thought I didn't need surgery after all! Then it hit me that I had already had it and I started crying. My nurse, who I like to call no-nonsense nurse, placed a box of tissues on my lap and went about her business. I took a peak at my boob and could not see a thing. They had bandaged the entire thing so I had no idea what was left under there. I was scared and I felt like asking the nurse what was going on under there but decided I would just wait and see in 2 days when I would take the bandage off. NN nurse brought me some ice for my boob and asked me what my pain level was. I said about a 5, which I didn't think was that bad. She suggested some drugs through my iv, so it would start working faster, then a pill. So I said sure. She made me eat some crackers first, which I was happy to as it was late afternoon now and I was hungry. Then she gave me a percocet, which she said the anesthesiologist had prescribed. I thought that was odd as my surgeon said she was giving me some lortab to take home but I didn't question it. She then left me to dress myself which I was a little surprised that I was able to do this on my own! I was wheeled into another room where I was finally reunited with dw:) I felt ok at this time. More questions from another nurse. She went over some instructions and said I could take another pill when I got home then every 4 hours after that. So we went home, hungry but I didn't want to stop anywhere. Took a lortab when I got home and almost got sick but managed to hold it together. 2 days later I unwrap myself and am happy. I survived with a couple of dents and a small frown under my boob, only noticed when I raise my arm. 

I ended up needing another surgery because they like to have a certain amount of space surrounding the tumor just to be safe that they got it all out. I didn't have enough margin so they needed to go back in and take some more. First surgery was on Monday and I decided to get it over with and do the second one right away on Friday. Maybe I should have given my body more time to heal but the doc said it would not have any ill effects and I just wanted to be done with it. So I am feeling good. Went to the gym Thursday and walked on the treadmill. Think I overdid it cuz I ended up pulling my stitches. Not a big deal since I had to get them cut open again. Friday comes and I am nervous all over again. Should have asked if I could get an iv nurse to put my lines in this time, but I didn't. I end up getting the same anesthesiologist as last time. I am on the table while he is jabbing away at my left arm. It hurts, but not enough to cry about. He moves on to my right arm, says I am difficult. I said I would be happy to leave. Everyone laughs but I didn't think it was funny. Several minutes have gone by and I can't fight back my tears. I am scared and just want to go to sleep. Finally he decides to put a mask on me to get me to sleep. I panic as I feel like I am suffocating, then calm down and take a few breaths and fall asleep. When I wake up I see fluffy nurse. She is very smiley and makes small talk with me. I am in more pain this time. Maybe around an 8. I can see my doc sitting across the way, talking into a recorder. I want to ask her how it went, but I didn't. My nurse is taking out my iv. I want to ask her to put some drugs in it but I don't. I do ask for some ice and a pill. She asks me what kind I want and I say bring me something good. I am wondering if she is really a nurse. I ask for diet coke rather than water and she says sure! I know I should be drinking water at this point but if she's going to let me have dc, then I will:) She gives me a percocet with no crackers this time. I don't get sick but my pain has been growing and it feels like a 15 by now. She says she will help me get dressed now and I think to myself that I am not ready for that. I am in too much pain but I don't say anything. She wheels me out and I see dw. I am grimacing in pain, clutching the ice to my boob and trying not to cry. I do not want dw to see me like this. DW looks a little shocked. I notice the two other patients there look so stoned and I wonder how come I am not. The check-out nurse sees I am in trouble and comes over. She remembers me from Monday as she checked me in that day. She asks if I still have pills left over at home and what am I taking. Tells me that I have to leave 4 hours between taking percocet and lortab as they shouldn't be mixed. Oh, that is good to know! She gets me another pill and some crackers. Finally, I start feeling better. I can tell she is a real nurse. I get home and this time it really hurts to try and lay down. Need a lot more pillows this time to prop myself up. This time I need the pain pills all nite long. Didn't need them the first time. I take them again in the am. Then start weaning myself. Try to nod off on the couch and am startled when my cat uses my lap as a launching pad and I jerk up in surprise. The pain rips through my boob and I scream and then wimper. Take a pill and decide to lock myself in the bedroom. Stupid cat.

I feel much more prepared for my next surgery. This time I will see if they will give me some pain med before I wake up and if they won't then at least have them ready to drug me asap. I will be more vocal. This is the time and the place to really let them know how you are feeling. They aren't just asking to be polite. I want the doc to take a pic for me before they wrap me up. I want to see what I have under the bandages and don't want to worry about it for 2 days or however long it will be. I will ask who is going to be putting in my iv. I still have several scars from that last guy. I have seen my surgeon's finished work in person and I am not too anxious about that. I know she can make good boobs. I've talked with a couple of women from Utah that used her. I know what to expect when it is over. I know the flight home is going to be difficult. It is still scary, even with all this info, but at least I will be ready. And for those of you that are going to have breast surgery, start getting used to sleeping on your backs now. You will not be comfortable on your side and it will be awhile before you can sleep on your stomach!

Monday, November 2, 2009

nerf footballs

I have been challenged by Teri (see blog on left) to join NaBloPoMo and try and post every day in November. So I will give it a shot. By the way, Teri just posted about diep surgery and it is much more informative than mine so you may want to check it out! I will try not to bore you with all my posts and try not to weigh you down with 30 heavy posts. I usually just post when something is on my mind so we'll see if I have enough stuff to last 30 days.

I saw a couple of nerf footballs left on the grass this morning while walking the dog. Takes me back to my childhood days full of playing football. I didn't really care about watching football on tv as a little kid but I have always enjoyed playing it. My earliest recollection  of playing was at our old house by maplewood park. We lived there until the summer before 3rd grade so I was pretty young. I remember running around in our huge back yard with one of my brothers, playing ball. Then when we moved, our front yard became the center of the neighborhood. We had a nice flat yard and the neighbor's was flat as well, so all the kids would congregate there for games: tackle football, zip (a wicked game where you tried to hit kids hard with a frisbee), and british bulldog. The neighbors never seemed to complain that we trampled all over their yard even though their kids were all grown up. We repayed their kindness by playing ding dong ditch on them. As we got older, the yards were just too small so we played two hand touch in the street. Around junior high, a new kid came into the picture. Joey was a skinny, blond kid who loved the miami dolphins (an oddity in a buffalo bills town) was bow-legged and always wanted to play quarterback. His younger brother would often tag along but didn't usually play. They looked nothing alike. Ralph was a big kid with really dark hair. I'm not sure where Joey came from - why I had never seen him before. The other kids seemed to know him.

I kept playing street football for a few years. I think I stopped somewhere around freshman year in high school. Not because I didn't like it anymore. More like it was something that girls weren't supposed to play and I was afraid what others would think. But I was damn good at it!

I didn't see Joey again until years later when I was managing a sports store in the mall. He came in and we caught up a bit. He looked pretty much the same. Skinny, blond guy. He talked about his pride and joy, his camero! I can totally picture him in a car like that! A few years after that I found myself working in a car plant, making motors. At break, people were talking about going to a wake of a fellow employee, this guy named Joey. I didn't know who they were talking about. I was new to that department and the plant was pretty big. But then I caught Joey's last name. I asked some questions and turns out they were talking about my Joey. I found out that Joey had leukemia as a child and he ended up getting cancer again and dying. Maybe that is why I never saw him before junior high and maybe that is why he was so skinny. He never talked about his illness and I never would have guessed. He was always so happy out there, pretending to be Dan Marino.

Sunday, November 1, 2009

Used to be running through my mind Now you're jogging Now you're just walking

Today's post title comes from the song Heartbreak Collision by Dolla (sadly murdered earlier this year). He is singing about someone that broke his heart but I like to compare this one line to things that take over my life. When anything major happens to me it becomes the main focus of my life and it is hard to get out of my mind. In time, things go back to normal, for the most part. Right now, brca is running through my mind constantly but eventually I hope that it is just walking, footsteps lightly...

Happy November.  Pink October is finally over! November is National Diabetes Month. I'll try not to bore you with all the nitty gritty details. Basically, there are a few types of Diabetes: type 1(aka juvenile), type 2 (aka adult onset) and gestational. Most important thing to know is that type 1 and 2 can occur at any age despite their aka names. It is fairly easy to tell if you are having symptoms of type 1. Increased thirst, increase in appetite eventually turning into a lack of appetite and then nausea, increased urination, rapid weight loss, fruity breath smell. I think the symptoms are the same for type 2 but happen more gradually and maybe not as extreme. I don't know much about gestational but I would think that they would test for it at your regular pregnancy checkups.There are so many diabetics in the world and most of you probably have at least one in your family. It really isn't a 'silent' killer like ovarian cancer for example, but there are tons of people walking around not knowing they have type 2. The symptoms are probably there but easy to ignore. It's a good idea to listen to your body once in awhile. Peeing too much? Do you wake up in the middle of the night to go to the bathroom? Maybe it is just part of getting older but it could be something else. Not a bad idea to mention it to your doc.

Diabetes can reek havoc on your body. You are at risk of heart disease, strokes, blindness, amputation, kidney disease and as every tod keeps reminding me, we just don't heal as well. There is no cure but we have come a long way in controlling blood sugars and using preventive medicine against some of the risks mentioned above. Not a disease that you can eventually snuff out of your brain because you have to deal with it at every meal, every outing to the gym, every time you get behind the wheel of a car. But it is something that you learn to deal with and get used to.

I was 16 when I got it. I missed a week of calculus class and I never did recover from that! I didn't flunk but just scraped by. It was hard for me to accept diabetes. I was a shy kid who wasn't looking for any attention. Last thing I needed was for anyone to think I was different or for my coaches to treat me special. I never told anyone that I had it but some people would find out. I'd say it took a good ten years before I really accepted it and gave it the attention it deserved. I've been real lucky that I haven't had any major complications considering that at one time in my life I went three years without seeing a doc or testing my blood sugar. That was after college when I was working at a ski resort and I didn't have insurance. It can be a financial drain having diabetes. Test strips cost over $100 bucks a month if you aren't covered so that is always the first thing to go. Syringes are cheap and can be reused if necessary.  Insulin is a must, but sometimes even then, you may have to squeak out a day or two waiting for the paycheck to arrive. I haven't had to do that in years. Since I've been with dw we have been covered by one or the other's work policy. We have been lucky to work for companys that offer partner benefits.

When I was in college, I worked at Pico Ski Resort on the weekends. Great gig, I got free ski tickets and a paycheck! I wrote a poem once, when I was alone in the little hut at the top of the t-bar lift on a little used run. All alone and in my lair, I plunge the needle with despair. I don't feel like that anymore, don't worry! I was just a kid. Things do get better, we adapt. Diabetes mostly just walks through my mind these days. As one day I know that brca will too.