Tuesday, January 26, 2010

afraid to even mention it out loud...

Lots happening now. Went to my gyn/onc yesterday and set up surgery for feb 9th. Funny cuz that's when my pbm/diep was supposed to be. When they first asked me when I wanted to schedule I said 'how about this friday?' Didn't exactly mean this friday but I would have! So today they called me back and said this tuesday the 2nd has opened up so I am ready to go! Kind of nice that I don't have an extra week to think about this. Instead I will spend the next couple of days tying up loose ends and spend Friday, Saturday and Sunday with my dw spending some major quality time together on the slopes and in the sack. After tuesday, I will be mostly limited to walking, sleeping and watching tv or reading for the next 4 weeks. Well, we do have a trip to moab planned for valentine's weekend but we will have to see how I feel. That might have to wait for later if I'm not up for any hiking.

Love my gyn/onc! As I mentioned before, she is very honest. Talked to her about hormones and she said they are controversial, basically because no one really knows for sure if women with breast cancer history should be on them or not. Thank you! This is pretty much what I had concluded from my research. With that said, she is willing to prescribe them for me, but I can also try some other things as well that might work for hot flashes like some blood pressure meds or anti-depressants. I am already on a preventative blood pressure med because of my diabetes so I'll have to see if that's one of the drugs that will work. I am willing to give it a shot without the hormones first and see if I can survive. I am fearful of my breast cancer returning before I get around to cutting the boobs off so I need to try and work this out thru other methods first. As for my libido, we will have to see how that plays out. I should have a little bit of hormones left running thru my body as apparantly women have some testosterone that gets converted to estrogen. My onc had talked about giving me a drug that would get rid of even that little bit but I think that is overkill.

Saw my fourth plastic surgeon today. I was pretty satisfied with her. One thing she doesn't do though is a sensory nerve allograft of the nipple which I would like to try. This is a procedure that, although it is a big long shot, might just get me a little bit of feeling in my nipple. It wouldn't be as sensitive as it is now, but I'd like to try everything I can to maintain some kind of feeling. She said she could probably fit me in sometime in february. I would love to get my boobs done in feb but at this point, jobs, insurance and our lives are so up in the air. And this is a big surgery that would need coordination between my ps and gs. Just seems like if I went that route, maybe it would fall through again and I really can't go thru that disappointment again. I need something positive to happen in my life before I can take on any more negatives and the ooph seems like more of a sure thing. Plus, everyone keeps telling me that things happen for a reason. I can't help but think that maybe I was meant to have my ooph now instead of later. Maybe I have something else growing in me that needs to be taken out now and not later. Which leads me to the hysterectomy. My brca mutation does not leave me at any higher risk than the general population for uterine cancer. But ever since I found the colon polyps I can't help thinking that my body is out to get me. And the docs leave it up to us to decide if we want to take the uterus out while they are in there for the ovaries. My wondertwin did have some endometriosis which means I probably will get that at some point and it is also a common problem for diabetics. I also know at least two of my aunts had hysterectomies although I don't know the reasoning around it. So I decided to take it out now. I sure as hell don't need any regrets about that further down the line.

I'm just babbling at this point. I am very excited and not too nervous right now. I haven't slept much though in the last two days so need to take a tylenol pm and get some rest in prep for this weekend and tuesday. Wondertwin will be doing the shit and fast with me on monday as she prepares for her colonoscopy! And teri (teri's blip blog on left) has her pbm/diep on tuesday! So think of all of us this groundhog's day.

Thursday, January 21, 2010

preparing for whatever comes our way

Still taking things day by day here. DW just applied for her job (which is going from a contract position to a federal position). Don't know what we will do if she doesn't get to keep it but she has applied for other jobs as well. Think I might be able to sign up for cobra coverage and keep my insurance for awhile but we aren't really sure of the details yet. Rescheduled my pbm and reconstruction for May 4th for now while I look into other options. Seeing my gyn/onc and a plastic surgeon next week. Leaning towards getting my ooph done asap and delaying the pbm just because things are so up in the air. Some of the positions dw applied for are for school jobs in cali so if she gets one, it could happen immediately and getting the boobs cut off and new ones glued on is such a big process that it would be better if our situation was a little more settled before we embark on that.

Had a visit with my dietician today. Seeing as I may not have any hormones soon, I am concerned about making sure I get everything I need in my diet in the right amounts, etc to stay healthy. I've only seen this dietician once before, in fact almost a year ago to the day, for some diabetic reeducation stuff. I really liked her so decided to stick with her rather than see someone more experienced with cancer. After meeting with her today, I'm glad I stuck with her. I already knew she is a type 1 diabetic but also turns out she had her ovaries removed about 10 years ago. It is so nice to have a health provider that really understands what you are going through. I had a pcp once that had gestational diabetes and she was one of my favorite docs. They just seem to talk to you a little differently than the others and I listen to them a little more. It feels less like a scolding when the advice comes from someone that understands how difficult it can be to do everything right and how we tend to beat ourselves up when our blood sugars are inevitably not perfect. We discussed hormones and different options like pills and creams and herbs (in case I can't get any meds from my docs), recovery from surgery and how pain can make my blood sugars jump, what to eat if I have no appetite after surgery, how to get more fiber in my diet, and talked about what kind of control I could live with in regards to my sugars. Yeah, I've heard the warnings for years as I am not the best diabetic. I've always been running high and so far have been really lucky with no major complications but I'm ready to tackle that issue and she gave me some really good tips on how to get my a1c down by a whole point pretty easily. I don't think she is too familiar with brca but she thinks I'm so brave and smart for going ahead with my preventative surgeries. It's always nice when people think you are smart and not nuts for doing the slice and gut.

Off to another interview soon. It's just a temporary position with the state so I'm not sure if it is really an interview or a test I need to take. I think I will head into it this time being a little aloof and see how that works. Maybe I won't be so disappointed if I don't get it. Going to have a great weekend regardless. We have received 38 inches of snow in the mountains since last weekend so we will be doing some snowshoeing and some more snowboarding:)

Did a little rearranging of my blog list on the left. I have it sorted by most recently updated now rather than alphabetically since the list is getting so long and it's hard to keep track of. Also added a couple of library blogs. One is dw's on books for tweens that she had to create for one of her classes so "check it out!"

Tuesday, January 19, 2010

and the truth comes out!

So our friend Jen came up for the weekend to see us and do some skiing, or so the story goes. Found out that what she really was looking forward to was the chili at brighton! Yes, she said as she was sitting on the plane she couldn't wait to get her some of that chili! Can't blame her though, 4 out of 5 of us got the chili on saturday. In fact, I think that is all I ever buy there for lunch. They make a damn good cup of chili and as we also discovered, they have the best brownies (at the coffee cart) I have ever tasted:) The riding was great on saturday. No new snow for awhile but good enough and I felt great. All my work at the gym has paid off for me. I am riding so much better than last year and held out as long as all the skiers. Last year, I had to take a lot of breaks to rest my legs but now I can keep up with the big dogs!

Sunday brought sunny skys (up in the mountains) which was so nice because the valley has been so dark with inversion and fog lately. We went to solitude and while the snow wasn't as good, it was nice to try something new and we had another great day. Solitude is just down the canyon from brighton but the slopes are a little steeper so the snow doesn't stick as well. DW was on fire this weekend! She has such a hard time getting boots that don't hurt her (or even sneakers for that matter) but she was fitted by the manager of the ski shop this time and he got her some that really worked for her. Funny how much better you can ski when your feet aren't screaming out in pain. Last time dw was at the shop the guy had to bring boot after boot out for her before she finally settled on a pair. That guy was hiding in the back when the manager fitted her this time and asked him how many boots she had to try on. Only two this time! Guess the manager knows his stuff!

We got to relax on monday. Had lunch at our favorite breakfast place, ruth's diner with jen, my bro and his wife then went to park city to visit the 2002 olympic museum and site of the bobsled track and ski jumps. Dropped jen off at the airport and she was already trying to figure out if she could squeeze another ski trip in before winter is over. And last nite brighton got 14 inches of new snow so maybe she should come back this weekend!

I am feeling so much better than I did last week. I guess I really do need to keep myself occupied no matter how hard that is sometimes. At least I know what kind of things make me happy. Of course I can't just spend all my time having fun:) Trying to motivate myself to get some things done around the apartment too so I can feel a little more productive. This should be an easier week for me anyway as I only have three days to myself. Thanks Jen for coming out here and lifting my spirits!

Friday, January 15, 2010

why can't every day be friday?

I'm back. It's been awhile since my last post. Wish I could say it was because I was busy but it was really because I just didn't feel like talking, or doing anything for that matter except feeling sorry for myself. Too many blows below the belt lately. I didn't do any dancing to Jay-z this week. Eminem is more my style lately when he sings "I'm just so fucking depressed I can't seem to get out of this slump." I'm trying though. Thought I'd treat myself by going window shopping at target and walk around the store with a starbucks chai. Yeah, sounds lame but I think it's fun sometimes. But guess I went to the wrong target cuz they didn't even have a starbucks. Went grocery shopping and picked the wrong line cuz I got the idiot that always says "so anything good happening?" When I said, 'I'm waiting' he said "why don't you make something good happen?" I felt like telling him to fuck off. I am trying to make something good happen you jerk. 3 interviews in a week and a half for two different jobs. That's not bad. Landing an interview in this economy is a prize in itself. But when you don't get the jobs, especially when it's one you really want, then it hurts. Wouldn't be so bad if my surgery was going to happen but it has been rescheduled for may. Yep, 4 months from now. That's a long time. So, I have two other appointments set up. One with my gyn/onc so I can schedule my ooph and one with another micro-surgeon to discuss the diep. If I like her work, I'm willing to jump on the table with whomever can cut into me first, the gyn/onc or the ps. Think I've even talked my gs into letting me have some hormones even if I do the ooph first. She's not real keen on it but I threaten not to get my ooph and she caves a bit. I'm willing to try going without them but I do want a prescription in my hand in case it is unbearable.

Things are so much nicer on fridays. That's when dw gets off for the weekend. I'm a different person when she's around. I've been smiling all day even though we've spent the whole day cleaning. When I'm here by myself during the week I have trouble making myself do anything. I have so much time on my hands that it is overwhelming. I'm used to working at places that are so demanding that you always have too much to do. When I'm faced with an excess of time I just don't know how to use it and I just end up wasting it. I know dw has tons of ideas for me so I am going to have her help me make a list for next week. Just one little thing a day that I can accomplish. Plus maybe one fun thing a day too.

We have a friend coming into town tonight. We'll be snowboarding the next two days. That will be a nice way to jumpstart myself cuz I haven't even felt like doing that lately. Looking forward to jb from lb to keep our minds off our problems! And then we've decided to try and head to southern utah for a weekend in a couple of weeks. We both have been feeling the stress and just need to try and remove ourselves from it as much as possible. I'm sure my next post will be more cheerful, so don't give up on me yet!

Wednesday, January 6, 2010

barkeep...pour me another beer. please

Guess my girls are fighters cuz they are using every excuse in the book to try and stick around. The newest bump in the road is that my surgery has been delayed until maybe april. Well, if I want to keep the surgeon I have chosen then my surgery is postponed due to circumstances out of anyone's control. I could choose to keep that date and use another surgeon, wait until maybe april and use my surgeon, or look into another group of surgeons all together. I am also considering getting my ooph now while I wait for the pbm. Of course that would mean a big fight to get hormone therapy since I would still have my danger boobs. The tods aren't too keen on giving hormones to breast cancer boobs that are estrogen/progesterone positive. i.e. cancer fueled by hormones.

Decided to feed my pity tonight rather than try and fight it. Was supposed to meet dw at the gym for some running but I asked her to come right home after work instead and to please pick me up some beer and ice cream. Yes, weird combo but that's what I needed. And the beer is apricot anyway so the sweetness goes with the ben and jerry's just fine, thank you. I suppose I could have gone to the store myself but honestly, it was hard enough pulling myself together just to take the dog out. My emotions could really use a break. All this up and down shit is confusing the hell out of them. Good thing we are seeing the bcsw on friday. I made that appointment because we were getting nervous about my upcoming surgery. Since then, we have run into the upcoming insurance issue and now no surgery to get nervous about after all. I feel like I should just bring my own box of tissues with me, especially since I have the kind with lotion in them and theirs are the scratchy kind. What would they do if you walk into therapy with your own box of tissues? Maybe commit you asap. Ha, ha, funny thing happened on the way to my mastectomies...

On the bright side, I will now be home for super bowl sunday and can continue our tradition of having people over for the big game. We can watch the olympic opening ceremonies on our nice tv instead of the crappy hospital tv. We will be home for valentine's day and can celebrate with style:) I have a call-back interview on friday and now I don't have to tell them I would need february off. Perhaps I can snowboard this entire winter. And maybe my boob will finish healing and I can get a little use out of it before it hits the chopping block. Guess I can return the south carolina travel books back to the library before they are overdue.

Tuesday, January 5, 2010

new me meets the old me

2009 went out with a bang! As I was anxiously waiting to kiss the year goodbye, I received such wonderful news. My two little sisters got tested for brca and found out on the 31st that they are negative!! What that means is they do not carry the mutation and now can be rest assured that they did not pass it on to their children. They are very relieved for their kids but did both feel a little bit of survivor's guilt which is pretty common in these situations, from what I've heard. While I wanted them to get tested I was dreading getting back any more positive results. To have them both come back negative was a dream come true.

2010 is moving along great so far. DW and I got to see a lot of family and friends on our trip to cali and we had an amazing time. This was the first we've seen of everyone since the whole cancer/brca show started. Of course we talked about it a little but then conversations turned to other things. We talked about past events, new events and new lives that have come into our world recently and much talk about the future. I found my 'old normal' on this trip and that felt really good. Not only did I forget about brca for awhile but I learned that my new normal and old normal can coexist peacefully. Yes, my life has changed but that doesn't mean that everything is different. I am still the same person I was before, just with some modifications in the works:)

Today marks the 12th anniversary of my mom's passing. Although I hate cancer and everything that goes with it, I have to admit it is good for one thing - it does give you time to say goodbye. I don't know how I could have handled it if my mom died suddenly in an accident. For all of you that are suffering from recent loses of your loved ones, I am so sorry. Do know that it will get better in time. I will always miss my mom and always wish she were here, but it has gotten easier with each passing year.

Here are some pics from our trip!