My BRCA journey continues...

I think I'm back. I feel a deep desire in my life right now to connect with others and share my journey, knowledge and thoughts. I can not believe it has been over two years since I last wrote an entry in this blog. Especially since finding out I was BRCA positive has taken me on a path I never envisioned.
 
So where am I now and what do I want this blog to be?

Well the moment I woke up from my bilateral mastectomy I felt as if I had my life back. I can't really explain it. But the year leading up to my surgery was very difficult for me. I struggled with anxiety and depression and literally feared for my life. The thought of what would my kids do with out me occupied my mind. I felt like a ticking time bomb.

Although my surgical choice is not for everyone, it is what took the burden and weight off my shoulders. I woke up that day feeling ready to take on the world and get back to living life. My husband  and I moved our children closer to my family. Something I did not realize was actually quite important to me and something I needed back in my life.  I felt as if life is too short and we are not guaranteed tomorrow, so why are we trying to raise our kids and go through this uncertain life alone. The health of my parents and sister is not guaranteed either. I wanted to know my niece and her know me as her "favorite auntie". I wanted my kids to have what I did not, grandparents that they were part of their everyday.

Family was always important to me and friendships that were like family. I think my husband and I were longing for a connection, a community, and I am happy to say I think we have found that in the town we moved to. We are still not completely settled, it has been over two years too, so up and moving was a bit risky. But I see the light !

I also took on a new job. My passion has always been oncology nursing. I have been a nurse for 15 years and a nurse practitioner for almost 6 yrs. I have spent these years devoted to helping patients and families who have been through what I have and what I know. Growing up with a brother with cancer and having seen what the disease can do, I have always been drawn to this specialty.

When I found out my husband had gotten a new job and we could actually move closer to family I pretty much freaked. I had not even been looking for a job. I remember the fear and anxiety about changing my job and what would I do. And there it was. As if it had just fallen in my lap; Calling out my name. Breast Health nurse practitioner and Navigator.

So here I am now taking care of women who are just like me. I talk to women everyday and I feel as if I am talking to myself in a mirror. Women who have family history of breast cancer, BRCA positive, newly diagnosed with breast cancer and long term survivors.  This job has challenged me in so many ways, but has taught me and helped me more than any other support group or anyone ever could. I learn of so many women's amazing stories daily and I am inspired by there own bravery, challenges and journey.

I have not told, but one or two, patients in my practice that I am BRCA positive. It seems to be something I feel is a fine line. I have to know that me sharing such a personal thing with a patient will benefit them. I do not want my decisions to impact them either, I would want them only to know they are not alone. Each decision one makes with this is an individual one and not for everyone. But we are not alone in the world. In fact we are a small, but outspoken, strong, empowered community that has a story to tell and we are eager to learn more and change this course.

So here I am, almost three years later. Still wanting to spread my thoughts and share my journey. It is not alway easy. I still have fear, I still see doctors, I'm in physical therapy, I am insecure, and I still have big decisions to make. I think about what is to come in my future. How will my genes affect my kids and what will they be faced with.

So read on my friends!
Thanks for listening!
Kim

When US were exciting!!

I remember when ultra sounds brought on feelings of excitement, joy, and a sense of accomplishment in what you created! I would look over at the screen and see a little person moving around. I would wait impatiently for my appointments, and take every opportunity to have an US. I now am anxiously and mildly in panic mode waiting for my US results from yesterday to confirm whether I need a ooph . As I layed in the dark examination room yesterday all I could think of was where and when did this all go wrong? How did I get from there to here? I have done everything in my power to stay positive and focus on the day to day stuff. That is certainly becoming more difficult the more time you have to think. The what if's start running through my head and it takes me to a very sad and dark place. I have two awesome kids that need me in there lives and I do not want to cut that short or take any of that away from them. Whose to say it is not going to be me. Cancer does not discriminate! I'm not any different than the next person, and my risk is that much higher. I just pray that in the end of all this, everything is benign, and I can try and move on with my life. I'm so tired of the rollercoaster ride! Thanks for listening! Kim

Haunted by my BRCA gene!

So I have cruising along, going about my business over the last 8 months since my pbm. I decided that 2011 was the year of silence. Silence being BRCA free, surgery free, stress free, worry free. I was determined to just enjoy my kids and my life until this monday!

It all just feel in on me, once again! I had my routine 6 month vaginal ultra sound and received a call about my results on thursday. Now my NP always calls me and gives me my results of ca 125 and US. I should have known after it was more than just a day that I hadn't heard from her. She went on to inform me that there is a "cystic lesion" on my right ovary and b/c of my BRCA history, and b/c of the features of the lesion I need to consider getting my ovary/ovaries out. The only way of knowing it is not malignant is by removing it. I now have any appointment with my gyn/oncologist to discuss my options and hear what she has to say!

I literally was frozen at my work desk, surrounded by all of my patients overwhelming diagnosis' of cancer, wondering what the hell just changed in a matter of a second. I remember staring at the number on my phone, not knowing who was calling, but contemplating answering it. My eyes where frozen in time, now I know why. It's as if I knew!

What is the most upsetting and difficult about this whole thing is I once again feel forced to make a decision about my body that I am not fully ready for. I feel like my body has failed me! I'm angry, scared, frustrated and fearful of all these changes that I have put my body through over the last 4 years. I get my boobs removed b/c I will do anything to be healthy and avoid breast cancer, and I truly believed ovarian was not something I would really have to worry about. I knew I would get the oophorectomy b/c I knew my risks, but I just didn't really panic about it. No one in my family had ovarian cancer, so it was the typical "won't happen to me". And now I'm being told I may have a malignancy on my ovary. WTF just happened.

One of the most difficult things to swallow in all this is I had not made a decision as to whether I was done having kids. I have two beautiful kids, that I am so grateful for, but to be told or have the choice taken away from you just seems so unfair. I talked to a friend tonight, who is an oncology nurse practitioner, who said it perfectly. "I am mourning the third child I could not have, the one I envisioned." And you know, she is right. It sounds intense and above the top, but that is how I feel. I'm sad! A lot of it goes back to when my brother died. I remember thinking what would I do without my sister, so thankful that my parents had three kids. And I always said I would have three kids for that reason. It is a little crazy and twisted, but that was my thinking. And it has always been with me! I also love the dynamics of siblings too. It all just pisses me off!

So help me out BRCA friends! What have your experiences been with oophorectomies, are others MD's recommending total hysterectomy, menopause issues, and does a "cyst" mean take it all out right away! AHHHHHHHH!

I once again need your advice, your support and your stories to guide me through this difficult decision!

Thanks for listening!

Kim

Where the hell have I been?

So where have I been. Not really sure to be honest. I think about writing daily, and I have days where I feel like I have so much to say to my BRCA world and other days where I just feel silent.

It has been about 7 months since PBM and there are days where I feel like this all did not happen and days I think about it alot.

I am focusing alot on exercising and slowly trying to rebuild stregnth in my uppper body. Something I have noticed is pretty absent. I used to love to move furniture and now I have my 4 year old helping me push and pull. That seems to be my weakest area. I also feel like I need to be so careful pulling a muscle.

I am getting back alot of sensation in my chest, back and underarm. It is soo random though. I also still struggle a bit with this feeling of itching from the inside. It is not relievable either, which is so frustrating. This usually happens when I have done a bit too much! Such as exercising.

On a positive note. I have found that my own experience with this BRCA life has allowed me to help others in my profession. Patients and providers. I most recently had a patient who was experiences a lot of pain that she just could not explain. She did have breast cancer and was undergoing treatment, but she also had a bilateral mastectomy. Because her description was what I have experienced I was able to talk with her and treat her more efficiently. And she was so grateful for my understanding of what she was goign through. I did not tell her that I had a bilateral,but I may if the time is right.

I have only told two patients about my surgery. Those patients were people I felt needed to know and where searching for guidance, that genetics and it's choices are difficult but manageable.

Managable has been my experience with this whole process. I have seen the deep hole it can put you in because I certainly felt so lost in the beginning, but I have also seen and experienced that life goes on. It just has too!

Thanks for listening!
Kim