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Wednesday, August 18, 2010

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


Monday, August 16, 2010

Frustrated!

I'm feeling frustrated and guilty still today. Mondays is normally a day that I am home with the two kids myself; my day off of work. Well these days have turned out to be extremely difficult during recovery. My husband returns to work tomorrow, and he has basically hit a wall taking care of all three of us constantly. Sitting in my bed or on the couch "recovering" is nearly impossible when you see the stress in my husband's eyes. He is doing an amazing job, but I need him to stay strong and confident in is ability to handle all this.

My son, who I expected, is having a difficult time with all the changes. He is having nightmares, does not like school anymore, and is really misbehaving in all areas. He is only four, and he is so sensitive and intuitive to change. So of course this is stressful for both my husband and I. We of course worry about our kids. And when you can't fix it, change it, or make it better the guilt sets in again. Then in my head I blame myself for all those around me struggling. Ridiculous, I know!

And honestly, I should be taking care of me right now! How quickly it is forgotten that mommy has booboos and still should not be doing half the stuff I am. Oh well! I'm aloud to have a bit of a pity party too!

Well tomorrow will hopefully be a new and better day!

Stay strong my BRCA friends!
Kim

Sunday, August 15, 2010

Surgery was 18 days ago. I am doing well. I have gone the whole day today just taking ibuprofen. I had to take percocet tonight because I just get tight and sore, and my skin is sensitive. The percocet tends to take the edge off and it last a while. My underarms get really uncomfortable, that seems to be where the most discomfort actually is. I am getting to a point where a feel good, almost too good and try to push it a bit. I do light dishes, laundry, pick up a bit, I have even gone against docs orders and lifted my daughter. It is so hard not to do things around the house when I know my husband is doing everything, the kids are crazy, but I regret this later in the day. I get so fatigued it is draining. I can say I actually feel guilty sometimes and then I think WHAT, GUILTY!

So lets talk about the guilt women carry with them. I am speaking from a married woman's perspective, but I feel like most women are this way. I can say I have had moments of blaming myself for throwing a wrench in my families routines and life. Going through this surgery you need friends and family to help you! There is no way I could do it without them. I have had my parents and sister help, my in laws, and sister in law, my friends. My husband has taken his vacation to take care of me and the kids and the house. My surgery was scheduled with my husband and I knowing exactly what would be a good time for us and his time away from work. I feel bad for inconveniencing our life. That this is even something we have to deal with.

And then I take a look at myself in the mirror or feel the pulling or fatigue from surgery and think, hello I am the one who had my breasts removed, who is restricted from enjoying the rest of summer, from playing with my kids, laying on my side, sleeping through the night, why am I feeling guilty. I did this for them, for my life! What is wrong with my mind, with women, why do we carry these burdens.

I also feel like the more I do, the more I am expected to do. From myself and my husband. Now he is always telling me to stop lifting, and go rest, but the guilt makes me think he is getting frustrated with me, so I do it.

I know each day will get better and I need to continue using people for help, and I need to put the guilt in the closet. There is a reason I suppose my doctor said 8 week recovery.

Thanks for listening!
Kim

Thursday, August 12, 2010

Hopeful, confident, and Revived!

I am two weeks post prophylactic bilateral mastectomy!!! And to all of you who have read my past posts and to all of you reading for the first time, I have made it through my surgery amazingly. I went into surgery with so many fears, apprehensions, anxiety, and confusion; I have come out of surgery feeling revived, strong, confident, relieved, hopeful and HAPPY! I have not felt hopeful, happy or excited for a long time.

So lets walk through my last week...
My surgery was July 28th. My last day of work was friday before that so I had a few days to let all the anxiety sink in even more. I literally felt like all the air was getting sucked out of me. My emotions had exhausted me. My husband and I however managed to celebrate our 6 year wedding anniversary in the North End of Boston on Saturday and I truly had one of the best nights with him. I woke up the next day with that empty feeling again however and continued to count the days to surgery. Tuesday I had to go to nuclear medicine at the hospital and meet the surgical nurse practitioner to inject the dye into both my breasts for the sentinel node biopsy. I have to say I was so nervous and anxious about his "procedure". I could not imagine getting something injected with a needle into my breast/nipples. Let me say, I hardly felt a thing. I left there feeling like I had expended so much energy on this freaking injection and I felt nothing. It did burn a bit, but painful is not a word I would use. That night my husband brought my kids to his mom's and I cried my eyes out and felt so bad for myself. Basically had a pity party!

The next morning July 28th, we woke up at 4:45 am to head into Boston for surgery. I medicated myself with a little Ativan, which let me tell you prevented me from going over the emotional edge. My sister and mother met us at the hospital, which was comforting as well. My family has a way of just relaxing each other in times of difficulty. We laughed, we joked, and it guided me into the OR that morning.

I have to say every single nurse I encountered was unbelievable. I am proud to be a nurse after the care I recieved from these people that never knew me. Even the physicians were great. The second I checked into the extremely busy surgical area at 6 am, he process began. I was greeted by the nurse who held my hand and felt my emotional pain and concern and just made me feel so secure. I was introduced to the anesthesia team and they explained to me the paravertebral nerve block that they have been now routinely doing pre mastectomy. This involves me lying on my stomach and the anesthesiologist injecting a "numbing" medication into the nerve area surrounding the spine. The medication is injected in the vertebral area near the scapulas. This medication then follows the nerve pathway along the back and front of the chest. Research at MGH has shown to dramatically decrease post operative pain after a bilateral mastectomy within the first 12-48 hours. The level of pain is blocked from this medication so the intensity is not so severe. I was so scared to have this done because in my head, any needles going near or in my spine scare the shit out of me. I did not want and epidural with my first born out of fear of long term damage. This is my crazy nurse brain taking over! I of course am so grateful I went through with this procedure.

The injection into my vertebral space did not hurt at all, a little stings here and there, but honestly, again, worried over nothing. They did however give me a little medication to relax before hand, but I was completely awake for the procedure. It was after this that the rest is foggy. I remember saying good bye to my family and husband, but really did not feel much emotion at that time, which I am so grateful for. I thought saying goodbye would be hard, thank God for medication. I then was wheeled away calmly, peacfully, and surrounded by supportive, caring people.

I woke up 7 hours later to my husband and parents. It is all still foggy, but I really just remember feeling good. It is not really the physical discomfort I think of, it is the emotional aspect. I just felt happy, relieved, like a huge weight was lifted. It was all behind me. I was at that moment looking ahead from the moment I woke up. I was of course uncomfortable and groggy, nothing that morphine can not fix. I was in recovery for a few hours, resting, visiting with my family and being evaluated. I have to say I had the most amazing care and nurses. I know they knew I was a nurse, but they just treated me with such relaxed, sincere and humorous care. Which is what I prefer. Laughter goes a long way in difficult times.

I then was brought to my room where I was settled in. I stayed for two nights. I felt really good, the pain was there, but well controlled with medications. I was placed in a cotton bra, with a 3 inch binder that went above my breasts. I had four drains, two in each axilla area. My chest felt heavy and sore. The day after surgery they started me on percocet for pain, and off the IV morphine. The pain was well controlled with the transition, but I did have some nausea and vomited a few times. This is what happens when you do not eat and take pain meds. So I quickly found that out. I was up and walked a short distance the night of surgery, and then the hallways the day after. I was a little dizzy the first time, and then realized I just have to keep doing it.

I went home two days later, and was certainly ready. I was not ready to go the day after surgery, which I know some people do. I spent the first week just resting, napping and letting people care for me and my kids. This of course has been the hardest. The day my kids got home was hard. Hard b/c my my husband and I were tired, it was alot of responsibility for him to care for all of us and the kids wanted there mommy, and I just could not hold them. I was able to have snuggle time with my son, who is 4, as long as I had a pillow in front of my chest, I let my daughter, whose one, sit on my lap, but that was a bit scary at times b/c she just moves and crawls all over you. But overall, I felt good. Pain was not holding me back. I think it was more the restriction of lifting and range of motion of my arms and the drains. I did have noticeable nerve discomfort. The skin under my arms and bicep area was very sensitive for about a week. That has gotten better of the last week and 1/2 though.

I did experience constipation, so take your stool softeners!

I gradually was coming off my percocets day by day and even doing probably more than I should around the house. Tripping over kids toys and crumbs on the counter are what makes me crazy. So ten days after surgery I had my first follow up appointment with the nurse practitioner and she removed two of the four drains. I did take two pain pills before I left because I of course was nervous about this and thought it would be painful. It was NOT! Having the stitch removed was more uncomfortable. Having the tape removed actually felt good to me, b/c I was so freaking itchy in that area. It just really felt strange having the drain removed, it is about 6 inches in you. I felt a huge difference in my armpit area after just the two were removed, my range of motion was better, and discomfort was better.

So I felt like everything was looking up, until sunday night I developed a sharp, stabbing, burning pain around my drain site on the right. It came sharp and fast. Stopped me in my tracks. I took pain meds, and went to bed. Assumed I had done a bit too much that day. I woke up the next day with the same pain. It was truly the worst pain I have ever had. If I moved a certain way or took deep breath or just unpredictable movement, the pain came on. I cried and yelled b/c of this pain. And that is not me! I called the doctors office and they felt it was the drain hitting a nerve in that area, and then some muscle spasms on top of it. As the swelling and drainage decreases the drain moves a bit and can change positions, changing it's purpose. I also had the visiting nurse at my house at the time, and thankfully she calmed me and advised I request the drains to be removed b/c my drainage was low enough for this to happen. The nurse practitioner called in some valium for me, which did work! Thankfully! She said sometimes it will not help, b/c nerve pain is tough to treat, but the spasms should be relieved. I spent that day feeling pretty annoyed and set back. I knew I was going to go to the doc the next day and request the drains be out. Could not deal with that pain again.

Woke up the next day, had to take a valium for the pain, drove into Boston and within 5 minutes, last two drains were removed without any discomfort and I had no more nerve pain. My armpit areas felt less tight and I felt like my range of motion was better. I was told I am still restricted from lifting until I see my surgeon friday, but usually 4 weeks of no lifting. This is so hard with my daughter, but I certainly do not want my implants to move. I also realized after having the drains removed where I was feeling the most discomfort and from what . I felt more aware of the actually surgery and implants.

As far as my cosmetic results, I feel so blessed and happy with my decision and the amazing hands of my oncologist and plastic surgeon. My foobs, look like my old boobs. They are fuller and do move, but they are the same size, symmetrical, and smooth. I am noticing as my swelling goes down I can see more chest muscle then breasts. But honestly I can not even complain, I am so happy with how they look. I feel a lot of tightness in the armpit area, and think I am having more discomfort from the nerves being cut. My skin is very sensitive to touch under both my arms and on areas on foobs. I also feel bruised if I press on my upper chest wall muscle, to be expected. I can not feel my foobs or the nipples, they are numb. It feels as if I am wearing a tight sports bra all the time, even if I have nothing on. I can not feel change in temperature, but I do feel like my nipples respond to touch, I don't feel it, but they change in appearance a little. I am two weeks out of surgery and I take two percocet in the am and two at night, and feel pretty good. I did take tylenol in between and assume it helped me.

I think fatigue is the one thing that I have noticed also. Fatigue is something that personally gets me frustrated and down a bit. I am a go go go person. So napping during the day or resting is tough. Don't get me wrong I enjoy my TV time and time alone, but I wonder how my strength will increase and how prepared I will be for going back to work. However, I know with each day I get stronger.

So emotionally I woke up from surgery feeling strong, happy, confident, and hopeful. I did not think or work on these thoughts or emotions, they are just present. I did not think about my pain, or my scars, I thought about my strength, my courage, my life, my kids, my husband, my family, my new niece that I will soon meet. I felt hopeful for the first time in my life. I thought about Christmas with my kids, and running around with them, and watching them grow and just be! These feelings have not left me yet either, of course I feel tired and frustrated, but that is because I am anxious and excited to live. And that is why we make this decision.

My visiting nurse whom I met once, entered my bedroom as I was hysterically crying about the nerve pain. She calmly talked me down, made me feel like me again, saw my husband, my kids, my new breasts, my weakness and her last words to me was that I was so brave and she admired my courage and my decision. She made me feel proud and confident in my choice, and made me believe her words.

So to all of you who are in my shoes, we are admirable, strong, selfless women. We were given what can be an unfortunate opportunity to see our future, and we have decided to change it, take it on, and not let it take us. We will have ups and downs, perhaps doubt ourselves sometimes, but we are strong!

Stay strong my friends, and thanks to all who have sent me well wishes and strength. It is your stories that have lifted me and guided me! How lucky are we all!!!

Kim

Monday, August 9, 2010

Surgery is OVER!

To all who have wondered and wished me well. I am a week and 1/2 out of my PBM. I am doing well. Today was a rough day, but I see a light. I don't have it in me to write yet, I have so much to say and share, but overall I am doing well. I also got my pathology back and no cancer or precancerous cells. I feel lucky, grateful, relieved and hopeful about the weeks and years to come.
Stay tuned for a detailed view into my experience.

Love to all who are getting ready for surgery and preparing and to all recovering! We are remarkable women!

Kim
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