Moving on.....

It's been a week since my Stage II DIEP surgery and I must really be moving on since I have yet to post pictures of my awesome bruises. When I look back to even a year ago, I was living and breathing this whole bilateral mastectomy with DIEP thing. Should I or shouldn't I? I knew I wanted to reduce my risk of breast cancer, but wasn't so sure I could actually go through with a PBM + DIEP. And now, it's been what, maybe 8 months, and I don't even think about it anymore. The fears that were trying to hold me back are gone.

Since I didn't share any pictures of DIEP Stage II, I will do that now. It looks worse than it it feels. Dr. Tobias did lipo on my thighs, waist and belly and it looks fabulous. There is minimal bruising in the other areas, so of course I post the "worst" pictures.

I am still wearing two binders, one for my breasts and one for my belly. I have them on for just about 24-hours each day. I don't mind them and I feel safer around kids when I have them on, so it works for me. On Thrusday I will have my follow-up in Boston. Then I will be done until tattooing sometime in February.

When I say "moving on...." I mean that this chapter of MY life is coming to an end. No more surgeries, no more Boston medical trips, no more appointments (which I will miss), no more worries. But what isn't going to change is my commitment to other women who are considering the DIEP. I will be there 100% for anyone who has questions about this procedure, my medical team, my recovery, etc. If anyone has questions please feel free to ask me. I also have two Boston DIEP "Sisters" who have had invasive breast cancer and have done the DIEP who, I am sure, would be happy to help as well.

My blog will stay up, but my posts will stop in time. Officially I won't stop blogging until after my tattooing and on some of my 'big' anniversaries.

So, if you are reading this for the first or the fiftieth time, please know that I am only an email away if you have any questions or just want to reach out. I will always respond. My best to my DIEP sisters and to all the others who have yet to make this journey.

Love,
Joanie

Stage II DIEP - done!!

The build up to Stage II DIEP and my fear of anesthesia was actually worse than the surgery. I showered with my special soap and worried about coming out of anesthesia. I walked the 5 minute walk to the surgical check-in desk and worried about anesthesia and then I met with an anesthesiologist and let her know about my fears due to my past experience. My confidence level didn't change until a wonderful CRNA and day surgery nurse said that they had never seen anything like that happen on Day Surgery. My fears seemed to leave me immediately. That was the last thing I needed to check off my list. Okay, so I will be alright.

For those who may be reading this post first and have no idea what I am talking about, I'll make it quick. Back on March 29, 2010, I had a 14.5 hour DIEP Stage I operation. When I woke up I was combative and a danger to myself and the staff. They put me back under. Then when they brought me out I couldn't breathe due to mucus or a large phlegm ball in my throat. Between my inability to breathe and a newfound sensitivity to morphine I had a rough two and a half days when I saw and heard things that weren't really there and thought I was just going to die. Anyway, when the phlegm ball disappeared and the morphine pump was removed I became myself again, but not without concerns. My concerns were for future surgeries.

So, now I know that future surgeries will be okay. I wore an orange bracelet that warned the staff that I had an allergy/reaction to a medication, in my case morphine. Whatever everyone did, it worked. This time I woke up just like everyone else does.

Back to Stage II. Dr. Tobias came in about 6:40am and marked me up with his famous purple marker. He drew circles in all the areas where he would do lipo, fat transfers, revision of my incisions and nipple reconstruction. He was very focused. After he left, the CRNA came in and put in the IV line. We took some pictures, then she asked if I was ready for the sleeping medicine. By now I wasn't worried at all. I knew I was in the best of hands and was very ready to have this surgery behind me.

Waking up was very different than Stage I. I just kind of woke up. It's all a bit foggy, unlike last time. They offered me some juice and crackers, then I think they moved me to another area. Again, this is very foggy.

But I do remember feeling fine.

Once I got to the new area, Mike arrived along with Sara and her mom. For those who don't know Sara, she had the DIEP on October 25th. Sara, along with Kristine, who had the DIEP on September 8th, have been my support system. Last week were all able to meet in Boston (see earlier blog post). Anyway, the nurse sent Mike down to get the car, while Sara and Barb stayed to help me get dressed. I might still be there if they hadn't been there to help. There didn't seem to be as much concern and follow-up on the nurse's part following day surgery as there had been following DIEP Stage I. Probably for good reason. This procedure was only 3.5 hours long and relatively minor in comparison.

I was given the folder with post-surgical instructions and two prescriptions. We should have been told to FILL THE PRESCRIPTION IN BOSTON, since when we got back home to Maine we couldn't get it filled until Monday. They had to call Dr. Tobias' office to get approval to fill it. As it is I am still waiting for WALGREENS to call me back after I left another message there this morning. Not a big fan of Walgreens about now. Because I couldn't fill the pain med presription I went light on the pain meds that I did have. Unfortunately I didn't get ahead of the pain and paid the price. For the first time pain hit about a 4/10 and the first time around it never went above a 2/10. My advice, fill your prescriptions in Boston and take them.

I've gone on too long with this post, so will post again later about my actual recovery.

DIEP - Stage II on Friday

We will leave tomorrow morning for Boston. I am very appreciative to my brother and his wife for stepping in to take care of the girls. Since this began I don't know what we would do without our families to help us out. Both girls are looking forward to seeing Uncle Tommy and Aunt Beth.

I know that JieJie and MeiMei are scared. The hardest part of any procedure, whether you are looking at 14+ hours or 3 hours, is leaving my kids. They have been through so much in their short little lives that it pains me to put them through watching us leave - again. They only thing we can tell them is that I will be okay and will be home soon.They are very good about creating their own prayers so I am sure that in their own way they will be right there with me in the OR.

Hopefully Mike will be with me in recovery, so we probably won't be able to post any updates. I have promised calls to my DIEP Sisters - so you will hear from us. Please prayer for a smooth, uneventful, phlegm-ball free operation.

Stage II Prep & Tribute to "My Medical Team"

This is me with Dr. Tobias one week pre-op for Stage II surgery at Beth Israel Deaconness Medical Center in Boston. He is going to 'fine-tune the canvas'. What that means is that he will smooth out the 'dog ears' or in my case 'mouse ears' from the abdominal incision. He will also lipo out about 200 cc's of fat from my hips and belly. Once he gets that he will deposit in into the spots where the breast tissue was removed above my breasts. And he will reconstruct my nipples.

As you may know, I've been on the fence about nipples. Now I am on board. I was able to look at their 'book' and saw that they looked very natural. And my goal is for my breasts to look so natural that even I will one day forget that they are not my originals. When I am done with Stage II and later Stage III, I may not have any more reminders of my surgery, but I will never forget the talented professionals who have crossed my path.

Obviously at the top of my list is Dr. Tobias. He is everything you would ever wish for in a surgeon - a perfectionist, personable, talented, committed, funny, understanding, patient AND he knows how to hire the best staff in the world. It is without a doubt that Maria was meant to be his nurse. She is incredible!! She is always available when I have questions, she's everything that Dr. Tobias is, in addition to feeling like a girlfriend. The team wouldn't be complete without Malika and Jean. They always seem happy to see me and really make my visits to their office feel like 'old home week'.

Although, he is no longer in Dr. Tobias' office, Dr. Mike Curtis was a real asset. I understand that he is now offering the DIEP in Syracuse. I will always remember how understanding and accepting he was when I was still under the effects of my morphine sensitivity and things were very crazy. If anyone reading this isn't in a position to travel to BIDMC in Boston, then I would certainly suggest meeting with Dr. Michael Curtis in Syracuse.

Stage II is still surgery, but it doesn't come with the same anxiety that Stage I brings. Of course, I am still scared about going under and coming out of anesthesia. I am praying that I don't have a phlegm or mucus issue this time. Not being able to breathe when you come out of surgery is a pretty awful feeling. Add to that the spinning sensation and the boots that put pressure on your calves. Feeling like I was on the Ninja Turtle ride at Storyland and having people grabbing/chasing me was pretty terrifying. At pre-op I met with a very understanding anesthesiology resident who told me that that really shouldn't happen again. Hopefully they will suction everything out this time. Plus I am trying NOT to catch a cold before Friday!!!

My recovery this time will be shorter, but it is still recovery. Looks like it will be a week of recovery with 2-3 weeks of no heavy lifting. I needed this reminder from Dr. Tobias since I have a tendency to try to bounce back to my normal life maybe a bit too soon. I don't want to pop any stitches.

Hopefully I will post again before Friday. It's a busy week trying to get ready for surgery.

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!!!

Getting Nervous All Over Again!

With Stage II surgery on the horizon (November 5th) I am getting nervous all over again. When I got my packet from Beth Israel yesterday with the surgical instructions I had to put it down. Because this isn't the 'big' surgery I really haven't appreciated that it is still surgery.

I am having flashbacks to March 29th. At that point I had put so much into that decision that I was more than ready. Plus I had the advantage of not knowing what to expect. This time I know that I can have an adverse reaction to anesthesia and morphine. Plus, who knows if I will have another phlegm ball incident. The one saving grace is that I absolutely trust my doctor. But it is still surgery.

Needles....not my favorite things. Last time I began drinking lots and lots of water so that my veins would be easy to find and less painful as they insert them for IVs and all the other things they hook up to my body. I can't imagine that I will wake up in the PACU and have tons of things hooked to me like last time, but I just don't know. I can honestly say that the ABSOLUTE WORST DAY of my life was the day I spent in PACU. This is certainly not the case with anyone else I know. They actually liked their nurses in PACU. Again, it's the phlegm ball thing. When you can't breathe, life is tough.

Being a post-surgical patient has been awesome. Being a pre-surgical patient is not quite so awesome. I have to wrap my mind around it all over again. Last time I had expected to be laid-up for 6 weeks, when in reality it was about 6 days, if that. This time I don't know what to expect. I am hoping to be feeling fine the day after as I have purchased tickets to the Super Supper at my daughter's school and want to go to the event. BUT, I know that if I plan on feeling great, I will be down and out and very disappointed. This time there shouldn't be an drains - I pray for no drains!! Plus I have given all my drain supplies (marsupial pouch, bathrobe, jacket, etc) to a friend who just had the surgery. The likelihood of drains is slim.

One other thing is that I thought I was just getting lipo, not that that isn't a big deal, but I hadn't realized that I would also be getting nipple reconstruction during this procedure. I've been on the fence about nipples. I like my breasts they way they are and am not sure that adding nipples will make me happy. I still can choose not to do that, but on the other hand......when I change in a locker room it would be nice to look a bit more normal. And I have two little girls who might even forget someday that I had a bilateral mastectomy if my body looked like everyone else's body.

So, yes, I am nervous. Yes, I will do more research into nipple reconstruction. And, yes, I will do what I can to be the best I can be for my surgery.

Pre-Op Scheduled for Stage II

For the last few months I have been a resource to some friends who are facing the decision of whether to get the DIEP or not following their cancer diagnoses. But now I am the patient again. With Stage II looming on the horizon I am starting to focus on what I need to do and what I can expect from this procedure.

What I know is that Dr. Tobias will go in and smooth out the 'dog flaps/ears' on the abdominal incision. He will also do some lipo and add the fat to spots where breast tissue was taken. This doesn't seem too awfully invasive; however I am quite concerned about me and anesthesia. If you recall, I had a very tough time with that during Stage I, which was 14.5 hours long. When I came out I had a phlegm ball and couldn't breathe for a couple of days. Not breathing meant not sleeping and not sleeping meant "crazy" times. Then, on top of that, I have a sensitivity to morphine! I've been reassured that with this surgery which will be about 3 hours this should not happen again and they won't give me a morphine pump, but I do have my fears.

With all that in mind, I am still moving forward. Today I scheduled my pre-op appointments. I have timed these appointments so that I can dovetail my trip to Boston with a visit to a friend who is having Stage I that week. This will be my first visit to Boston by myself. I am excited about the adventure of the trip, but also that I don't have ask to anyone to watch the girls since DH can do that.

It feels like years since I have had to deal with referrals and authorizations, but I am back at it. Luckily I have a wonderful PCP whose staff 'gets it' and makes it easy for me. One thing I have learned along the way is that my insurance provider is very much a member of my 'team'. They may be the silent partner, but without them none of this would be possible. Before each appointment making sure that they are on the same page is essential.

So, now I need to wrap my mind around another surgery. One thing that is very very different this time around is that I am not spending endless hours on the internet like I did with Stage I. I want Stage II. I know that I am in good hands. I know that they will answer all of my questions and Maria has already done alot of 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.

Last Days of Summer

It's been so long since I blogged that I think I may have forgotten just how to do it. Well, not really. All summer I have been on dial-up service and chose not to do much writing online. But now I am back at home and will start writing about my reflections of an awesome summer with my new breasts and about my upcoming Stage II surgery in November beginning in September. That's only a week or so away, so it won't be long before I'll be back in the swing of things....I will cherish these last few days of summer with my girls.

Nipples

Two years ago did I ever think I would create a blog post entitled, "Nipples"? Not in a million years. Life has a way of throwing curve balls, so today I thinking about nipples or actually the lack of nipples.

At my last post-op appointment with my PS, I told him that I would like to have nipples created as well as some touch-up liposuction at my next surgery in November. Stage II typically is the nipple creation stage, so I have been planning on doing it. Until now. Well, let me tell you what has changed.

This week it has been so hot here in Maine, so I have been wearing all those tank tops I bought for post surgery. I have been going without my bra. At this point the only bras I have that fit are the mastectomy bras and I didn't want the extra weight or the binding feeling. AND I LIKE IT. Yesterday I even picked my daughter up at school this way and it was such a freeing feeling. Prior to surgery I never would have gone without a bra if I was going to be seen in public.

So this is where nipples come in. I don't have any, so I don't have that awkward appearance of going bra-less and having nipples show through. Even in cold weather or if I get a chill I don't have to think about my nipples. Very very freeing. Not that I thought about my nipples at all before the surgery, but after the surgery I have thought about alot of things I never had before.

Here's my dilemma. Do I have the PS reconstruct new nipples, which will always be semi-erect (without any sensation) or do I go with a 3-D tattoo that looks like a nipple? As a traditionalist I always figured I would do the typical Stage II nipple reconstruction, but I am leaning strongly toward the tattoo. The thing that is tipping the scale is the freedom to go bra-less when I choose to. If I go with the nipples then I would not walk around bra-less in a tank top at public events. Not that there is anything wrong with that, but as I said I am a traditionalist, so I just wouldn't do that.

Plus, as a new 38A, I am limited. I've tried all the big chain stores for bras that fit my new body, but it is an exercise in futility. So, luckily I have already been fitted with mastectomy bras, which are great. They give me the shape that I have always lacked and they are comfortable. But on hot days, particularly when I moved to camp, I like the simplicity. And putting mastectomy inserts into a bra just aren't my idea of simplicity.

As I searched the internet for a photo for this posting, I came across lots of tank tops and camis with shelf bras built in. I wonder if that would make the whole semi-erect nipple a mute point. I will have to try one to see, but I am still leaning toward the 3-D nipple. If anyone of my readers have dealt with this issue I would absolutely love to hear from you.

Today I am cleaning. All that clutter I talked about last week, well it's still here. I was working on a special project that consumed me for a few days, but now I am back.

Offical Recovery is Over - Back in the Saddle

My official recovery is over. Today marks the start of Week #7 and since the typical recovery is 6 weeks, it is now over. I realize that I am one of the lucky ones. Other than the bad spell with anesthesia and morphine, my surgery and recovery have been uneventful. I like that. Life is back to normal. Well, almost normal. Wearing a sports bra under work clothes just doesn't cut it. But, I am lucky that I have breasts and that they feel/look quite normal. Well, other than they are numb. Unless they are being touched they feel normal. I will take this over the roller coaster of biopsies and mammos and MRIs.

Today was my first official client appointment. As you know, I work for myself as a Certified Career Management Coach, so today was the first day I started seeing clients again. First I pumped myself full of coffee - high test. Up until last week I was reluctant to drink caffeine even though Maria and Dr. Curtis said I could do so way back during Week #2. I held off, but now I am back. I love my coffee. For years I didn't drink it due to its association with breast lumps/soreness, but I don't have to worry about that anymore.

Plus, the caffeine was just what I needed to get going today. I've had great appointments with clients today. Felt like I was back in the saddle. Now, to the computer to create their resumes. But first my blog. Since starting this blog I have not written much at all about my work. So, let me tell you that years and years ago I quit my 'secure' job to start my own career counseling/coaching business and I love it. I love my job. I love career coaching. I love resumes. I love job search. I love working for myself.

Wow, the caffeine has truly kicked in. It's been six weeks since I even felt like doing work. Even if my body felt fine, my brain was still a bit groggy. Details were fuzzy, even a week ago. But now, I am into the details and excited about creating some exciting, detail-oriented resumes today!!!

In the beginning I thought I would stop blogging after Week #6 and start up again right before Stage 2 surgery in the fall, BUT blogging makes me happy, so I will continue even if it is sporadic. Tracking my progress makes me feel good. Seeing how far I have come in a year makes me feel great. In a future post I will go back to where I was a year ago as I started down the road to my PBM with DIEP and how it feels to look back.

Time is speeding by and work awaits me.....