Friday, April 9, 2010


WWLS - what would L say? L is my breast cancer social worker. I have seen her 2 or 3 times on my own and twice with dw. I started seeing her because I had convinced myself that the pbm was the best choice for me but I was too scared to go through with it. L is not there to tell me if I'm making the right or wrong choice. There are no right or wrong choices as my survival rate is pretty much the same with or without surgery. L helps me talk through my reasoning and guides me towards the finish line of this brca journey. Well.. she helps me with more than just the brca stuff because now whenever I have an issue playing out her voice pops in my head and I start reasoning through things.

Ever since my hyst/ooph I have been second guessing my choice of cutting the bitches off. I was so ready to do it and when my surgery date was cancelled, I felt destroyed. So I went ahead with my other surgery in the meantime. And while I was waiting in pre-op (for a very long time) I felt so relieved that I wasn't there for the pbm. That's when I started the second guessing. And then of course, I had to go through the many weeks of recovery. All in all, recovery is really not that awful but I hate it just the same. I hate the interruption in my life and I'm really not looking forward to doing it all over again. Now that my recovery is just about over I feel ready to move on. I've got plans stacked up for May, I want to find a permanent job, go to school, hit moab hard with the bike this summer, etc. None of this moving on includes more surgery or time for it.

So WWLS? I don't want to go see L right now because I know what she would say. We would talk about my original decision and why I made that choice. And we would discuss if any of that reasoning has changed. And I would have to admit that no, none of it has changed. I still don't want to risk getting a recurrence or a new bc that might require chemo or lymph node involvement. I still don't want to go through with radiation. I still don't want to risk getting mets. If anything, I have more reasons to go through with the surgery now. My maximum out of pocket expense has almost been reached for this year, so financially it would make sense to do it soon. I have a big lump in my boob from the lumpectomy that will probably not go away at this point. I am nervous about going in for my next mammo as it seems like it would just pop or at the very least, hurt a lot. It does hurt a little just from touching it. Surgery would give me a lumpless new boob. Another reason for surgery is that I wouldn't need to get another mri. I'm still working on getting the last one paid for from 7 months ago. I don't need that stress in my life.

I tell myself that I decided to do the pbm because after reading the message boards I came to the conclusion that most people practice surveillance and then choose surgery when they reached a certain age. Well, I was definitely in that age group where everyone was/did have surgery by. Maybe my choice was based on fear! Ha, not. See reasoning above. I made a sound choice, I just don't want to stick to it. And I have to keep in mind my family history - which sucks. I could very well get more bc.

It's almost like I'm back to square one. I have chosen the pbm but am too scared to do it. At the same time, it is not square one. I am so much better now. I'm not depressed, I'm living life and enjoying it and moving forward. I don't cry all the time and when I do it's just little tears popping into my eyes instead of the heart-wrenching tears of yesterday. I'm not going to see L right now. I want to live in my little fantasy world (where I'm normal again) for a little while longer. I plan on getting my mammo in june, talking to my breast doc afterwards and moving on from there. If there is one thing that I've always known about myself it's that I can do anything I set my mind to. So when I'm ready, I know that I can do it. This whole brca life is fucked up, but I can do it.


  1. That's the problem with choice, isn't it? It's one of the ironies of this journey -- we have so many options, it's sometimes paralyzing. If you don't think this is the right time to have a mastectomy (and, to be fair, is there ever a good time?), then don't pursue it right now. But, if the reason you are putting it off is fear (you talked about being scared but didn't say of what), I wish I could convince you -- or find the right words to express -- that it's no big deal. I guess maybe the question you should ask yourself is: what am I more scared of? If you are more scared of surgery than having a recurrence, then you should just continue with surveillance and, should you face cancer again, know that you made that choice. But if you are more scared of cancer than surgery (that's how I felt), then you should reconsider surgery. You have a unique perspective; you are cancer survivor. You've faced the beast and defeated it. Whatever your path, though, with the strength you possess from the battle you've already waged, you have the power to chose what's best for you. Have fun at Moab!(I love it there!). Cheers, Steph

  2. Steph, yours was the first blog I ever read, followed by Dee and Teri, and I've seen you all go through your pbm and I do believe you when you say it will be ok. I just have a strong aversion to medicine and surgery and drugs. If I could say for sure that the only cancer I might get again would be just like the first time then it would be a no-brainer for me to opt for surveillance forever. Wish I could get one of those crystal balls:)

  3. I really wish this was easier, Janine! I know the feeling you are describing, I had the same one for awhile. I'm afraid for you because you've already had breast cancer, and we both know your recurrence rate is higher than the average bear. I suggested to a friend of mine (who has had breast cancer/radiation but is terrified to go through with a PBM though she knows she should) that she should make a list of her fears, and then we could address them one by one. Maybe you could do the same thing. Yes, the whole damned thing sucks, it does, there's no way around it. I'm here if you need to vent, ask questions - whatever.

  4. Life is good but life is hard... It was a tough week for me as I struggle to get all my work projects prioritized yet I add even more and more to my plate as I prepare for my PBM. So I agreed to give a talk about kids and diabetes to the Kiwanis Club, and 15 minutes after I get back to work I find out I have a new-onset type 1 little child rolling in the door. After day 2 the obvious was stated, "Diabetes sucks!" At the end of 2 days and hours of talking and teaching, I summed it up before I walked out the door: "Diabetes sucks, but you can live with it. You can do it." What else can you say? You don't have much of a choice when "genes go wild" but to live with it and roll with the punches. The choices and treatments are not usually optimal, which makes the "living with it" part that much harder. Maybe that's why we so easily see how much courage it takes to live with something like BRCA and other life-threatening illnesses, disabilities and chronic diseases. It's your attitude and how you carry on no matter which treatment path you choose to take today. And so while I was saddened on Thursday to welcome another youth to the club of diabetes, I was filled with encouragement when I listened to my phone messages that evening and heard the voice of my last new-onset patient who was calling to tell me she's like to become a diabetes educator and could I help her along that path... 2 months into her journey. Wow. I can do this BRCA thing. So can you, Janine, no matter which path you take. You already ARE doing it. And I am inspired and encouraged by all the growth and sharing you have done so far. And by your energy. Keep the faith, wt. Love you, sissie.

  5. I feel just the same as you. I know I should go for a PBM but it really scares me and I dread the recovery time aswell and everything else that goes wit it. I also have a high risk of getting breast cancer again as I'm BRCA and I don't want to wait to get it again so what choice have I got! Good luck. xxx

  6. Good luck to you too, El! My sis is getting her pbm in May and hopes to video part of her experience. If I can figure out how to do it, I will post it on my blog. Maybe it will help us out somehow.

  7. It really doesn't help that every time I turn on the TV I hear the ad for JCPenney: "Here come the girls..." When they come to take me away, and I have to tell the anesthetist to not sneak up on me this time, I will be singing that right after I finish singing "Goodbye to (you) boobs".