10 Steps forward, a couple steps back!!

Well I am not blogging as much as mind would like me to these days. I certainly always have a lot to say, but time does not warrent it always.

So I truly have done great with recovering from my PBM, and I know how lucky I am to have had such little complications. However, as I have become more active I have experienced more pain and discomfort. I think alot of nerve pain, regeneration perhaps and muscle pain. This is so difficult to swallow sometimes b/c it just reminds me of what I have been through over the last year. The business of life allows me to avoid and deny alot of life's curve balls!

Feeling my pec muscles pull across my chest frustrates me, or feeling an itch on the right side of my breast where I believe there is a stitch drives me insane at night when trying to sleep, or feeling the stretching under my armpit down to my ribcage at times stops me in my tracks. All of these feelings are things I would like to avoid. I am aware of my body, I know where things are now and what muscle is not happy for the day! These are things an untouched body does not experience. I want to feel untouched again.

It is difficult with the kids too, b/c I do not have a choice at times to not do things that perhaps aggravate my discomfort. Lifting the kids, doing massive amounts of laundry (yes my hubby should do it), cleaning, and just doing things I like doing! I enjoy moving furniture without waiting for my husband, or mowing the lawn, doing yard work. I sadly enjoy these things. I have found however, these motions are really making me uncomfortable.

So and the answer is easy, Do Not Do It! I know, it seems simple, but you just do not realize how much we take advantage of our bodies great abilities until we are restricted. I have some great information from other bloggers, which has been helpful. I feel I need to get myself back into physical therapy. I just can not seem to find the time to do this, and that is the saddest part b/c my purpose in this surgery was to take care of myself!

It is almost 6 months post op and I had to take a valium the other night to relieve some of the spasms under my arm. This helped slightly, but I was pretty annoyed that after this much time I need to revert to medications. I do frequently take ibuprofen, that has been my staple. Usually just once a day, but that depends on what I have done.

So overall I am still taking it day by day, or even week by week. This week is tolerable, last week I was slightly distressed !

Thanks for listening!

Kim

Getting side-tracked by LIFE!!

I am sorry to have neglected my BRCA blogging and friends! It is not for any other reason than being swept up by the "real world". I returned back to work about a month ago and from there life took over. I am happy to say I have been less consumed with my BRCA mutation lately, which has steered me away from writing! However, I will wake in the middle of the night and have a rush of thoughts and discussions amongst myself! So it is all still a process!

The last I wrote I was struggling a bit with mobility and just adjusting to post operative BS. I was struggling a bit with anxiety and depression too I think. I feel as if I have regained a sense of self over the last month or so. Returning to work has helped me refocus my mind. I have less time to think about me, my body, my restrictions or feeling bad for myself. In being an oncology nurse practitioner, I am faced with what my life could be daily, so for right now, I feel so lucky and grateful I was able to take the measure I did to prevent this disease from affecting me directly.

However, I still have moments that I cry because I'm still scared. Or I get angry because I just want to be able to mow the lawn or move furniture without pain or being in pain the next day! So the emotions are still there, but I just have less time to feel bad for me! This is a good and bad thing. It is sureal sometimes that I actually went through all this. So there is some denial going on.

I stopped going to physical therapy because it was more of a holistic approach and I did not feel like it was helping me regain range of motion, but I did join the gym and I have started swimming. That is all I have really done and it felt pretty good actually. I was and still am very tight, but the water really stretches me out. I have not started weights, but I am able to do the rowing machine, only for a short time, and the eliptical. I only do 10-15 min on each machine, but I feel like it is a start for me. I still have a lot of numbness, but I have realized lately feeling is coming back under my arms and back. Breast/nipples are still numb.

The numbness is weird. I do not associate my foobs anymore with really anything. It is like they are not there. I do however have relief that when I look at myself in clothes and even naked, I look like I did before. I had unbelievable reconstruction results! I do not like them being touched by my husband or really myself. They do not really have purpose anymore. Depending on my mood, this reality bothers sometimes, but not always.

I am at times self conscious about how I look. I went swimming for the first time and was very nervous about putting a suit on. I wondered if they looked fake or if people thought "oh she has implants". But everyone tells me I look natural. And in most cases I agree. I did show some of my closest girlfriends my foobs, and they thought they looked great! They were actually surprised. I do realize that everyone has different reconstruction results, the process is different as well. I chose immediate reconstruction with nipple sparing, I know this is not for everyone!

I do feel lucky about how this process has been going. It has not been easy though, but I do read others blogs and know they have struggled in ways I have not. So feel fortunate in so many ways. I think we all process this experience differently, we move through at different paces, and we are faced with different external stressors.

At this point in my life my priority is being a mom and getting through raising them the best I know how. But also to be healthy and take care of myself. So the journey continues!

I will try to continue to write and be more informative and helpful to others going through this process!

Thanks for listening!
Kim

Looking For Answers and Answering Some of My Own Questions!? (Let me know your answers!)

It has been almost 7 weeks since my surgery (pbm). I have been having trouble writing and updating my blog, so I am sorry to all who read. I feel as if my emotions and thoughts are all over the place. I am healing nicely, pain is minimal, only taking ibuprofen occasionally, but I get physically exhausted and I am emotionally fragile. I never know what my mood will be. When I am tired, my mood is worse. I just feel like since the physical part of the surgery is improving and I am feeling stronger, my emotional state is weaker. Perhaps I am thinking more clearly, no pain meds, or the reality of what I have done is sinking in. I am not sure.

One minute I want to spread the word and feel so passionate about BRCA and the next I want this all to go away. I feel sad, lonely, frustrated, fearful and I second guess all of this. What if what I have done is not enough. What if, what if, what if.... Then I feel strong and powerful and want to help others get through this process and share my story.

I'm just all over the place. Which makes focusing on a topic impossible.

I have secluded myself a bit from friends and interactions. I actually went out for the first time the other night with a girlfriend and honestly it was nice. This weekend has been my first "real" full day by myself with the two kids. I did have my mom with me at the zoo! It 's been exhausting but actually nice to start feeling like MOM again. Not that I have not been one, but I did depend on others to really help me with them.

So what can I focus on to be helpful to others???? Perhaps I'll answer questions I would like answered by others!

So a reminder! I had a skin/nipple sparing silicone implant pbm!

How do I feel 7 wks post op?

My breasts feel heavy all the time and there is a lot of tightness in the chest area. Especially under my armpit, but nipple level. I feel as if there are hooks holding my breasts up! It is not painful, just weird! I feel as if I have a tight bra on all the time. I have not sensation on my breasts or under my arms and extending to my back. This is scary when shaving! I feel as if my breasts a bit saggy too! If you can believe that one! I feel like there is some scar tissue or skin puckering under my breasts, my scars look great is just feels heavy. I have been massaging the area, I do hope this goes away. I do notice at the end of the day I am a little sore in areas and have pulling in areas. I also am very sensitive to cold. Drinking cold products, being chilled, this becomes very uncomfortable and my muscles tend to tense up and it just does not feel right. So living in New England is not going to be great for me!

How do I feel emotionally?

Well that is a loaded question for me! I am seeing a social worker right now and started to before my surgery. This surgery has helped resurface some underlying shit in my life. So I do feel like this has been an emotional journey for me. I have a lot of fears still of getting cancer! That has not really left my mind. It is not intense, but there. However, with the amount of close family and friends that I have lost I think this fear has been en-grained in me forever. I am learning right now how to change my thinking and enjoy my life that I have right now! That ought to be interesting. I do not regret having this surgery though. I woke up from surgery feeling extremely confident in what I did. I know it was the right decision . I continue to struggle at times with guilt as well. Guilt of putting family through all this. I know it is crazy, but I do sometimes. The impact it has had on my husband and kids hurts me. Even though my children do not know what surgery I had, they know mommy was not "normal mommy" for sometime. I still can't give big hugs, roll around, just be me! And that hurts sometimes.

Has this changed your relationship with your husband?

Yes! It has added a stress in our life temporarily that we just did not need. My husband has been amazing and supported me through everything. He took care of me for a couple weeks after surgery, took care of the kids, house, everything. But about 3-4 weeks after surgery I think the stress of the "job" got to him. And as I looked better and did a bit more, the expectations were there. We really needed to take a step back and still do and think about why we did this. I also liked that I was being cared for by my husband, crazy huh ! but I am a complete control freak and I take care of most things, so having someone else care for me and the rest of the crap going on around us was really nice. I like that he was with me more and we reconnected in a sense. However for him, he was out straight and ON all the time! I know that is not easy. When I was tired or moody he could do nothing right either. No matter what he did or said, I was just overly sensitive too. I also feel like I owe my husband for being there for me. Which personally I too feel is ridiculous, but I feel that way. Or perhaps I think, how can I thank him for going through this with me! I am grateful I had him through this process, even though it has been hard on us!

Are you exercising?

I'm walking that is it, and just started stretching. I do not feel like I was guided good here. I was not referred to a physical therapist, I go back and forth about whether I need that anyway, but I do feel like I want to be guided a little more. I tend to do start out a little quickly. I was weeding the other day, doing housework, back to lifting. I just do not do things gradually. I have noticed my range of motion is pretty restricted in my arms and underarms, so I really want to stretch and strengthen this area. I was spinning before the surgery, and hope to get back to that. I just get so freaking tired all the time!

Fatigue???????

I have a lot of fatigue and it gets me very upset. I get tired, I get emotional and cranky. Which I am sure happened to me before this surgery. The fatigue is just physical at times and that is not what I am used to. I also do not sleep well, so I know that is not helping. Laying on my side is still very uncomfortable, so moving in bed is frustrating. I am nervous b/c I am going back to work in a week and my days are long and emotionally draining, so this scares me a bit.

Has this changed you?

I do feel like this has changed me! And I do wonder where this road will take me. I am someone who feels I have been given a challenging and bumpy life path. I do feel as if this path has however made me who I am and given all the great things I have. I have always believed that everything happens for a reason, but I have struggled sometimes with finding the reason. Sometimes shit just happens right! I work in the oncology world and have made it sort of my life, my passion. As an oncology nurse practitioner I am faced with cancer and what it does on every level there is. Having personally watched my brother live and die of cancer I have experienced that level as well. I just wonder if this is all too much. I wonder how I will feel sitting across from my breast cancer patients. Will I have it in me, will it instill fear in me, will I feel stronger, will I tell them what I went through? I just don't know! Will this whole experience lead me down a different road?

I hope some my answers help others! Please respond and answer some of the questions for me! I am certainly always looking for guidance!

Thanks for listening!

Kim

Variant of Uncertain Significance- Not so Insignificant!

Today I write with a heavy heart. My mother's bestest- bestest girlfriend from childhood is quickly losing her battle with cancer. Lynda has been my mother's friend since they were 10 years old. They had sleep overs together, learned to drive together, dated together, were each others maid of honors, raised their children together, became grandmother's together and have lived fully a life of loyalty and true companionship to one another. And we are losing her! And I ache and I mourn deeply a life without her.

Lynda was first diagnosed with breast cancer in her 30's, she was treated, and then re-diagnosed with a second breast cancer in her 40's, she was treated, in her late 50's she developed another breast cancer, underwent treatment, had a BL mastectomy, ovaries out, and was doing well. Obviously three separate breast cancers was concerning to her and anyone. She was tested for BRCA mutation, and was told it was a variant of uncertain significance. Obviously, going through all these cancers had taken a toll on Lynda and her family. We all just took big deep breathes each time she had a doctor appointment. It was about 9 months ago when Lynda was then diagnosed with a Sarcoma of the lung, she had a one whole lung removed, underwent multiple testing and screening, and all were hopeful that the cancer would be gone, but of course this was now a new cancer and her fourth diagnosis. WTF!

Lynda was recovering at home for a few months, and doing ok, she was able to enjoy her grand-daughter and kids, she went with my mom for their rides and shopping, but she was not herself.

About a month ago, Lynda started having some difficulty talking, and of course her family and all were concerned. It was confirmed that disease had spread to her brain. Tragic! She underwent whole brain radiation, and within two weeks of finishing she continued to not do well. After further testing it was then confirmed her disease was pretty much everywhere. It still makes me speechless. About three weeks ago, Lynda's doctor's basically told her family that there was nothing else they could do for her as far as treatment. She should go home and be with family. They also informed them that the uncertain significant genetic results that they had received ended up being found to be BRCA 2 +. The MD had said this was her first patient this has ever happened too. That a genetic result overtime and with greater research ended up being re-categorized to a BRCA mutation. Lynda was at the time upset, and of course worried about her girls, but was also slowly shutting down; her daughters were not overly surprised, but this now meant something more as far as it affecting them genetically.

So this is what surprised me about Lynda's the news. That the results of variant uncertain significance means it is unknown at this time if the genetic sequence is at all with disease risk, it is not yet classified. These variants are studied overtime and this is how genetics are being brought about and found, with time. In case, her genetic variant with detailed research has been re-categorized, so she is now in fact BRCA 2 +. Her daughters were both tested last week, as well as Lynda's sister. By the way, Lynda's mother died of Pancreatic cancer at a young age.

Lynda was transferred today to a hospice home after her daughter's and husband lovingly and selflessly care for her at home for the last month. She now lays comfortably surrounded by an outrageous number of friends and relatives who sit vigil at her side. My mother, her best friend, her person, sits too.

I feel blessed because my husband brought me to see Lynda on friday when she was alert and aware of things and people around her. She asked me about my surgery, how I was feeling, we all laughed about the times we had as kids growing up with them as our crazy mothers. We filled the room with great memories and laughter, and I hope that gave Lynda a sense of peace and joy. She was quiet most of the time, but she smiled and laughed. She stared at me many times, just speaking with her eyes. I know she knew she was leaving us soon, and let me tell you she is a fighter, but her spoke to me with calmness in her, she did not look scared really. I know however, she wanted to live a long life with her kids, husband, grandchild and friends. This was not in the plan.

I remember when my brother died Lynda was the one who took charge. She just always knew what my mom needed. Not only did she help raise all of us through my brother's 12 year battle with brain cancer, but she knew how to be my mother's friend through it all. They talked multiple times a day and that was so normal for them. So when my brother died, I had to come home from college, and I had nothing appropriate for a wake or funeral. Lynda brought my sister and I to the mall to find a dress. (she also helped with prom dress shopping as well). I was just not in to it, and we decided to leave, she grabbed my hand, brought me to her closet and said try this on, you can one of my dresses. So there I was, 21 years old at my brother's funeral, wearing my mother's best friends black dress. I am so grateful for that dress and for her ability to make things easy and right.

I could truly write forever about Lynda, and really think I should right a book about my life and the people in it. You would never believe the drama and loss that we have had, but we have also prevailed and we have remained a strong, bonded group of friends that we call family. I am devoted to all of them for life.

What does this all mean ? What are the chances of my mother and her best friend from childhood both being BRCA positive? What are the chances of their daughter all being positive as well and being faced with the same fears, decisions, statistics? It is just mind boggling.

So as I sit hear in the silence of my home, covered in tears, recovering from a prophylactic bilateral mastectomy, BRCA 1 +, I breathe a sigh of relief and fear. Relief and gratitude that I knew at a young age my risk, my genetic predisposition, and that I was able to make a choice to fight this disease and do what I can to prevent it from attacking my own family. A sigh of fear because I wonder if what I've done is enough. Is what I've done going to really keep cancer away from me. Will find another place to go, another organ? It just makes me scared. Is there ever enough that one can do. I guess I just have the peace of knowing I did whatever I could do at this moment and time. And what will be, will be!

So tonight I dedicate this blog to all those affected by this disease and to all those who have fought like hell to beat it, but did not! Their strength and courage will always guide us through and inspire us to live life every second that we can.

I love you Lynda and will remember every moment we had together and for teaching me about friendship, loyalty, laughter, motherhood and always dressing for success! :-)

Thanks for listening!

Kim