Countdown Begins.....

Okay, so I haven't posted much about my upcoming surgery. This really surprises me. Time constraints have been a factor, like the start of a new school year, a Disney vacation, two classes I am taking, etc. But the reality is that I am not excited about this at all.

I've been squashing and denying all my fears at least until my pre-op appt, which is next week. There is really no sense in worrying about anesthesia, phlegm balls and the general risks from surgery until I have a chance to discuss my concerns with my doctors. My biggest concern is the anesthesia and making sure that I don't feel the same as I did when I came out of 14.5 hours of surgery. Truthfully, I don't think I could ever do that again!! Granted, most people don't have phlegm balls that prevent them from breathing, but that's another story. Still, it weighs heavily on my mind.

Next week I will meet with 'my team' and, I am sure, will feel more confident in my decision to move forward. It will be nice to be closer to being back to normal. And when I think about it, my goal, is for my kids to not be reminded of my surgery every time they see me. That alone will propel me forward.

I was reminded by another DIEP friend whose response to me when I said, "Three weeks from now I will be having surgery." Her response was, "Four weeks from now you will be recovering from that surgery." That really helped me to put it all in perspective. Stage II is such a small thing compared to Stage I. It is minor. BUT I feel great now and don't really want to feel like a post-surgical patient, even for a week.

In time I will wrap my mind around this procedure and get excited that I am so close to the finish line. One silver lining is that I get to visit with two DIEP friends while I am in Boston for pre-op AND I get to see my medical team again. I like that there is always a silver lining!!!

6 Month Anniversary!!

Today marks the 6 month anniversary of my bilateral mastectomy and reconstruction. I just want to report that I feel wonderful. I feel normal. Most days I don't even think about it. But when the 29th of the month approaches I do tend to reflect on how far I've come since March 29th.

A year ago I really was obsessing on whether or not I should have my breasts removed to fend off my risk of invasive breast cancer. There were endless hours of internet research trying to figure out if this was my best option or if I should wait and watch. There were endless hours connecting with new friends on the best breast cancer support site online. I can't say enough about the support these women gave me. I found women there who represented both sides of the question, "should I or shouldn't I?" Listening to both sides was key to making my decision. One thing that was very apparent to me was that in 3, 4, 5 or 10 years I DID NOT WANT TO BE spending endless hours at breastcancer.org. I did not want to waste another minute on this horrid disease. I wanted to be done with it and move on to living my life.

The only hurdle I had to moving on was a bilateral mastectomy with reconstruction. This was very scary to me. How could I possibly live through and recover from a 14.5 hour operation? Would I be normal after all that? Would I regret my decision? These were very real questions.

Sometimes in life you just have to take a leap of faith. I knew in my head that a PBM/DIEP was the right thing AND I found, what I believe to be, the best team in the world to do my procedure. I just had to get the courage to schedule my surgery. That was probably the toughest phone call I had ever made. Once it was made and the surgery was booked, I started reaching out to people I knew personally who had taken this path before me. Five friends come to mind as they spent lots of time with me on the phone answering questions like, "what do they feel like now?", "how did you make your decision?", "did you go with nipples or tattooing?", "what kind of follow-up have you needed?". You get the picture, nothing was off limits. These women were my lifeline. Not one person regretted her decision. No one was in pain. No one died. I could do it.

So on March 29th, 2010 I was as calm as I've ever been as I walked over to BIDMC for a 14.5 hour surgery. I knew I was doing what was right for me and for my family. I trusted my medical team. And now, I simply feel relief that that part of my journey is over. My risk of invasive breast cancer is now 0-2%, not 50-85%. I can live with that!!

"More importantly, how does your husband like them?"

This is a post that has been waiting to come out. Maybe I am being a bit touchy, but when a friend's friend (male/55+) said, "More importantly, how does your husband like them?", I didn't take it well. I gave him just a cursory response, but later thought about the absolute thoughtlessness of this comment. He is great example of someone who truly doesn't get it. I did not have my breasts removed/replaced for any other reason than to reduce my risk of breast cancer. Going from a good B-cup to a small A-cup isn't about cosmetics. I've wondered what it is that I said that may have gotten him thinking I was in for enhancements. Anyway I just needed to get this off my chest!!

My blog is meant to be about my experience as a high-risk woman, diagnosed with LCIS (lobular carcinoma in situ) and when faced with my options, chose to have a prophylactic bilateral mastectomy with immediate DIEP reconstruction at Beth Israel Deaconness Hospital in Boston with the best doctors in the world (my opinion)! I have completed Stage I of my DIEP procedure. I still have one more surgery and two more office procedures before I am complete. Stage II is scheduled for November 5th.

My posts will continue, albeit sporadic since I have a pre-K daughter who attends school half-days and I am trying to fit my work into those short periods of time.

Hugs!!

Today I noticed that I can give hugs without cringing. Can you believe that for years - yes, years - I haven't been able to hug anyone without my breasts hurting? They were always sore and tender. Over the years I gave up coffee, chocolate and anything that I thought might be causing my breasts to be sore. Nothing worked.

Cystic breasts are cystic breasts. And the cysts caused my breasts pain. Pain when running, pain when sleeping and pain when hugging.

So today is a great day!! Even though I have given and received tons of hugs since coming home, I had still kind of protected my breasts when doing it. Until today! I am thrilled. I can give bear hugs!!

This week was also a turning point in other areas as well. First, I haven't had a cup of coffee all week. I love coffee and I don't have to worry about it's effect on my lobules or ducts any more. But I didn't feel like I needed it. For the past month I have craved it and have had a couple of cups a day, but something changed. I don't know what it was, but my body isn't craving it anymore and I am taking advantage of not having to spend the extra time drinking it. The second turning point is that I realize I am back to being me. It is amazing how the body can bounce back from such a big surgery. I do realize that I am lucky and blessed beyond belief to have had such a speedy and uneventful recovery.

A quick note to my regular readers. I will be away for much of the summer and will post even more sporadically, but in September I will begin again. With my Stage 2 surgery scheduled for November I will be posting more frequently at that point. So, have a great summer.  I will be lakeside with Jie Jie and Mei Mei and loving every minute of it. With no worries of breast cancer or surgery, I can relax and enjoy the most important things in life.

Next week this time.....

Next week this time I should just be getting out of surgery.....this morning at 5:30am I fast forwarded to next Monday and thought, "Oh I will be walking to the hospital next week this time." Then when I was driving home from Rockland today at 2:30pm I thought, "Oh, I will still be in surgery." Then when I went to JieJie's Art Show tonight at 6pm I mentioned to a friend, "Oh, I will still be in surgery next week this time." Now it is 8:50pm and I am thinking, "If all goes well I will just be getting out of surgery." It is so hard to believe. But I will be on the other side of the surgery. The healing journey will begin. I can't even describe what it is like to choose this type of surgery just so you don't have to live in the shadow of breast cancer.

Waiting is tiring....waiting to get the results of my first, second and third biopsies. Waiting for consultations with breast surgeons, oncologists, plastic surgeons. Waiting for just the right team. Then after making the most difficult phone call of my entire life - the one to schedule my surgery, a different kind of waiting began. Waiting for March 15th......then waiting for March 29th.

Seeing the fear in the eyes of those around me is tough. How do you look at a little 4 year old who doesn't really understand and not see the fear? How do you tell then how you will feel when this whole deal seems unimaginable? This is when you want to just wake up and realize it is just a bad dream. But no, the clock keeps ticking, but the waiting is now getting very short. Part of me wants time to stand still and the other part wants time to fly by.

So, one week away from surgery and I am getting nervous.....but when I wake up tomorrow I will be able to say, "Next week this time my surgery will be over, the waiting will be over and the healing will begin."

"Shut it down. Shut it out."

This is exactly what I needed to hear. I run my own consulting firm and have a tendency to obsess on my work. I don't have regular hours and can be found on my computer at all hours of the day. And I will bend over backwards for my clients. But I am feeling some stress right now with my surgery date quickly creeping up on me. There are so many things I need and want to do before I head into surgery.

Since this all began I have connected with several wonderful women who have been tremendously supportive throughout my rollercoaster of decision-making and with the details of the surgery, hospital stay and recovery. But last night I spoke with a woman who told me to "shut it down, shut it out." And that was just exactly what I needed to hear at that point in time. I was contemplating squeezing one or two more clients in before my surgery, but have re-thought that and will refer the clients to a fellow consultant who has agreed to cover for me while I am out. I feel guilt about that, but her advice really hit home and will free me up to enjoy my family and pull some loose ends together.

Emotional Rollercoaster

Oh, the poor secretary at JieJie's school. When I told her that JieJie's aunt would be dropping her off and picking her up next week, she thought that DH and I would be going somewhere fun. When I told her what we were doing I almost cried. I felt bad for her. She may never make small talk again after that and she is such a delightful lady!!!

So, it looks like the emotional rollercoaster is still there. A part of me had thought that since I am committed to the surgery that I had moved beyond the sadness, but maybe I am moving into it. I don't know.

When I heard myself say that I was having a bilateral mastectomy it really hit home. Me? Why me? I've said this before, but I can honestly say that early detection is a two-edged sword. It's great because I have information and can take the time to make informed choices, but it's awful because I have the time to gather information and make informed choices. My friends who have journeyed through breast cancer, surgery and treatment as well as the majority of doctors I have seen are on the side of never letting breast cancer take hold. My BRCA friends are with me on this and understand the uniqueness of our position. Although I am not BRCA, we travel the same high risk road. Then there is that one lone oncologist who told me to wait until I got 'real' cancer. She certainly planted doubt in me, but in the end it is my life, my body, my choice.

So, this morning for a few moments I was sad.

Cold Feet?

I am not sure where this feeling came from, but yesterday I got really cold feet about my upcoming surgery. I still want the surgery, but am thinking that it might be better for me if I wait until the fall. I hadn't realized that I wouldn't be back to normal in six weeks. With summer coming I have so many things I need to be able to do, like living at my camp with my two daughters, while DH is two hours away. I don't have any help up there, so maybe the timing just isn't right.

Oh, to have a crystal ball. Wouldn't it be so much easier to make these decisions if we could only foresee the future? Putting my surgery off by 6 months wouldn't change the risk. With LCIS my risk increases 1% each year. The risk is that if I put it off I may never get back to rescheduling it.

I do find it interesting that I am questioning my decision to move forward. When I make big decisions I typically do this type of waffling. I like to know that there is an 'out'. BUT with a decision this big, I was surprised that I am rethinking my decision all over again.

One thing I did do was contact my PS's nurse who is going to connect me with a past patient who had all the same things going on that I do: LCIS, PBM, LCIS and lives a distance for the medical center. I am looking forward to speaking with her. This may be the piece of information I need to feel confident in my decision.

People with LCIS are in a unique situation. We don't have invasive cancer. What we have is a marker for increased risk of breast cancer in either breast with that risk increasing by 1% each year. 20% of in situ cancers are LCIS, so we are not in the majority. I know of lots of people with LCIS (from breastcancer.org), but I don't know anyone else in real life. So a big missing piece for me is talking to a real live person who has had the very same diagnosis as me.

At this point the best matches for me are my BRCA+ friends. They have been so supportive of me and my upcoming surgery. It doesn't matter to them that I am not BRCA+. They know what it is like to be told that you have a 50-85% chance of getting breast cancer by age 80. These women have been inspirational, brave, educational, supportive......the list goes on. They have helped me more than they will ever know.

My online LCIS friends have also been supportive, but still there aren't many of us who have gone down the same road as me.....living hours from the hospital, LCIS, PBM and DIEP. With LCIS, we fall in the middle, we have non-invasive breast cancer which may never spread. We are given our options: 1. vigilant follow-up, 2. vigilant follow-up and tamoxifen and 3. PBM. We are left to choose on our own. There are no advocates for us. We do our research, connect as much as we can and hope for the best.

So, in hoping for the best, I am trying to wiggle away. I want stop thinking about this and get on with my life. I want to focus on my kids, my DH, my business, my life. I have no idea if this is normal, but this is where I am at today. I call it cold feet.

Countdown to March 15th (NOT)

I have had to leave Facebook temporarily since my wonderful niece (she really is wonderful) is doing a countdown to March 15th for a very cool concert she is going to. It happens to be the day I will have my breasts removed and endure 12+ hours of surgery to create new breasts. I want time to stand still. I get a knot in my stomach each time I see her countdown, so I have been avoiding facebook.

Although, I have created a FB account under the name Beth Israel which will be primarily updates as we move closer to the 15th and as we move beyond the big day and the big surgery.

It's all about the FEAR.....

Here is another post from a previvor's blog.....this says it all, for now....
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From this blog:  http://goodbyetoboobs.blogspot.com/

3) The worst part of surgery is the fear and anxiety I felt leading up to it.

It's hard for me now, a month removed, to quantify exactly how scared I was before my surgery. But it goes without saying I have never been more anxious or more fearful of anything in my life. And now: nothing. No fear. No anxiety. When I said before mastectomies only remove breasts, I was only half truthful: they also remove the anxiety. Nothing about recovery -- not the soreness, not the painkiller-induced fog, not the emotional vulnerability -- is as difficult as living life under the crushing weight of fear and anxiety. I know it sounds simplistic, and this is a statement that can only be said with the benefit of hindsight, but here it is: surgery isn't so bad. The shit I put myself through before -- now that was torture.

Reflections

Now for some reflections. I want to talk about my beautiful and loving daughters. Jie Jie and Mei Mei are truly the light of my life. When you are facing a very difficult decision and a very long (12 hour) surgery you start to think about all the things that are important to you. My DH is my best friend and the one person in this world that I undeniably rely on to hold me up. He has been supportive throughout this past year in a way I never would have expected. Accompanying me to each and every key appointment. Never complaining. Always deferring to 'my' decision. But in his eyes I could see that he doesn't want to see me battle breast cancer with chemo and radiation - if I can avoid it. He has always insisted on being there for me before, during and after my surgery. I could never have asked for a better partner in life.

Fear, Worry, Bargaining......

I am actually getting a bit scared. My search for a plastic surgeon is nearing the end, which means that my impending surgery will be scheduled and I will lose my breasts. All this is by choice - sort of. The two-edged sword of LCIS leads me down two roads:

1. Do nothing drastic
2. Do something drastic

If I do nothing drastic then I it may be a matter of time that I get invasive breast cancer and my path will lead to mastectomy, radiation and/or chemo along with the lingering effects of that.

If I do something then I will be heading to surgery sooner rather than later, but I will eliminate the need for radiation and chemo. This makes sense. BUT I am scared. All my life I have been healthy. Other than a couple or car accidents in college and a kidney stone that landed me in the ER, I have been in pretty good shape until I started on the biopsy rollercoaster last September.

There is nothing quite like waiting for the results of a biopsy and having those results take weeks to receive. You get to do alot of thinking during that time. Your options become pretty clear as you wait. You wait. You wonder. You worry. You bargain with God. You pray. You hold your children closer. You connect with those closest to you. You pray. You worry.

As soon as the results come back, life goes back to the new normal. I don't have invasive cancer. You begin to almost forget about it. You move forward. You slip back into denial.

But the ongoing search for the right procedure and the right surgical team continues to keep my feet to the fire and moving toward my goal of reducing my breast cancer risk.

Loving Life.....Questioning.....

Some days are just so wonderful and today is one of those days! I am home with MeiMei. We've gone on walk, painted and picked pumpkins! We had a lovely lunch of mac & cheese and mandarin oranges. What I really like is that this is just an ordinary day. As I face one of the biggest decisions of my life, what I really want is just more ordinary days with my family.

I don't want regrets about 'jumping the gun'. My biggest fear is that I will end up with lifelong residual pain because I couldn't continue to live with the risk (50 - 85%) of breast cancer. By the time I have my surgery I hope to have total confidence in my decision. However, in the meantime, I will question everything.

As breast cancer continues to target those all around us I am reminded that I may be jumping the gun (before a diagnosis of invasive bc), but I continue to see just how devastating the diagnosis of bc is when it strikes. Although I worry that my LCIS could be spreading as I type this, I am comforted to know that statistically I am still a Stage 0.

In the next month I will meet with two plastic surgeons in Boston, a breast surgeon in Boston and my current breast surgeon. By the end of October I hope to have my game plan in place. When you are feeling just fine and having an ordinary day it seems so out-of-place that in a few months I will be recovering from a bilateral mastectomy and DIEP reconstruction. Well, I think I will get back to my ordinary day and finishing painting.

What if...

What if I decide to move forward with the surgery in Boston? That will mean about 2 weeks in Boston. Five to seven of those days I will be in the hospital in pain and with multiple drains. The rest of that time I would be somewhere else (???) in pain and with multiple drains and my family. The somewhere else concerns me. A hotel - how will I sleep? A friend - how can you ask someone to do that? Other concerns - what about JieJie's school? How can we leave her home? How can we have them both with us?

After my appointment on the 24th of September many of these questions will be answered. I am not the first out-of-town person to deal with all this. But it worries me.