ACS - Making Strides Against Breast Cancer

Maria, my nurse from my plastic surgeon's office, is forming a team for the October 3, 2010 Making Strides Against Breast Cancer walk in Boston. The team name is Boston DIEP. If you are interested in walking or donating please click here, I support the Boston DIEP team! THANK YOU!

I donated online and it was very easy. I clicked on Maria's name so that it will be credited toward her fundrasing goal. I love fundraising and if there is any way that I can help in the fight against breast cancer and the promotion of early detection I will do it.

About twelve years ago I was one of the founding members of the Maine Race for the Cure and the Maine Affiliate of the Susan G. Komen Foundation. We were instrumental in getting the RFTC off the ground and building a foundation for what is today a two-city (Bangor and Portland) event held in September. If you have never participated in one of these events you really should.

As Race Chair, I traveled all over the country to learn and to particpate in races. There is nothing like the sea of pink you see when you are walking. It always brings tears to my eyes. Those experiences were actually a factor in my decision to pursue my prophylactic bilateral mastectomy (PBM). When you see women fighting for their lives because it wasn't found early, then you realize just how important early detection is. Although my decision to have a PBM was difficult, I realized just how lucky I was to have the option of reducing my risk of breast cancer before it could take hold.

So, whenever I have the opportunity to support friends who are raising money for breast cancer research, education or treatment, I find ways to give. Please help.

Week 6 - Day 3

This is my 100th post. When I started this blog about a year ago, I never thought I would go public with it. It was just my little journal and way for me to sort out my feelings about a having a huge surgery or not. Now, less than a year later, I am pleased to share my blog with people all over the world. Even though there are some very hideous pictures of me (see Week 1/Week2 posts), the benefit of sharing my experience outweighs the embarrassment of having the world see me in a not so good light.

A few months ago, I was scouring the internet looking for blogs of women who had walked this road before me. I was desperately trying to find someone whose experience paralleled mine. That someone is Teri over at http://www.myblip.wordpress.com/. About six weeks before me she had a PBM with DIEP and chronicled her story on her blog. One night I found her and connected immediately. Amazingly my stress started to dissipate almost immediately. She wrote about what each day, then what each week was like. I began to feel strong, to feel like I could do it too. As I began my recovery, I went back to her posts to see how my recovery compared to hers. Better yet, she would email me words of encouragement. She is out west and I am about as far east as you can get, but we still became friends. We may never meet, but I can assure you I will always remember her and be grateful to her for her support and encouragement.

I would like to publicly thank all those women who have reached out to me to support me and to share their breast cancer experiences with me, but I won't name them. They don't have blogs and may not want their names posted. So, I will say that they are old old friends, new friends, friends from college, friends from my town and online friends. All of you held a piece to the puzzle I was trying wrap my mind around as I moved toward my surgery date. As the date got closer the puzzle was coming together, but there were still missing pieces. At that point there were a few key connections that were made in person and via the telephone that were instrumental in pumping me up for surgery. I will forever be grateful to each and everyone of you.

And, how do I thank my non-breast cancer friends and family? The cards, the flowers, the meals, the trip to Reny's, the visits, the babysitting.....where do I even begin to thank you? You will always hold a special place in my heart. Thank you.

Maria and my medical team were also instrumental in getting me over the hump. On my pre-admission visit to Dr. Tobias, I had four pages of questions. Maria very throughly answered each and every question. She put me at ease. That was a key moment for me. She did this with confidence and humor. She also connected me with another person who had had the same surgery for the same reason just a few months before me. Again, a key piece to the puzzle.

So, for my 100th post, I just wanted to recognize all the people who were instrumental in getting me to where I am today. It was truly a team effort.

However, the one key person I can never thank enough is my Dear Husband. You've read the posts, so you know just what he did to support me before, during and after my surgery. We can now laugh about some of the 'crazy' things that happened (or didn't really happen) in the hours after the surgery, but there were moments of sheer terror for him and he never let me know at the time. He was steady and supportive and loving every minute of every day. I love him and will forever be grateful for his love, patience, understanding and support.

Week 6 - Day 2

As I have mentioned before, I am back to normal - EXCEPT - I can't snap my pants. This is a problem since everything I wear has a snap and a zipper. And the snaps close right at my incision. So today I am wearing some capri pants with my zipper undone, but with a jacket over it. Plus I am wearing my binder which makes it hard to zip and snap. It's not a bad dilemma, but it is a dilemma. Do I go out shopping for some sun dresses that would be wonderful if the weather cooperates? Or do I try to find some elastic waist pants that I can roll down and never wear again when I am totally recovered?

Mike and I are headed to Boston for some follow-up appts next week so maybe we can take some time to shop. I know he would just love that!!! Well, he would love it if we were shopping for golf clubs. I also need to check into bathing suits.

Since I am not having the second surgery until fall, I need to figure out how to live with my body as it is for the next few months. At home I can do just fine with what I have, but when it comes to work clothes I need help. Maybe I will go out around here today to see what's available. Hopefully I will be pleasantly surprised.

As far as recovery I am doing great. What I notice most is that I am thinking much more clearly than before. I hadn't realized that things were foggy, until things cleared up. Maybe there's still some of that nasty anesthesia floating around in my body somewhere.

Week 6 - Day 1

Every Monday I am so excited. Last week it was "Four weeks ago I was in surgery....". This week, it's "Five weeks ago I was in sugery...." I don't know how long this will go on, but I am thinking that after this week when Monday comes along I probably won't be focusing on the surgery date. In my mind I have the 6-week recovery in my head and next Monday will mark the 6-week date.

At this point in time I really don't have any pain, except at night. It's not really pain, but again, discomfort. It feels like a thera-band being pulled across my chest. Tightness. I am taking only 2 Tylenol before bed now and nothing during the day (most days).

Every morning (7 days/week) I am exercising for 45 minutes. It's keeping me in shape. My arms still need to do more stretching. It's easy to run my fingers up the wall, but when laying on my back with my shoulders over my head I can really feel the stretch. I need to do more of those stretches to really get the mobility back. Plus, while I am on my back, I am going to try some crunches today. Everything seems healed so I don't think I am going to pop a stitch.

Speaking of stitches. My 38cm belly scar is looking pretty good. The scabbing and glue is still coming off. My designer belly button is looking great. I had a few concerns a week or so ago, but now it's looks normal and very nice. Great job Dr. Tobias!!!  My breasts are healing well. The scabs/stitches are pretty much gone now. They are still numb and will stay this way for a while or longer.

Now that some of my belly sensations are coming back I can focus more on what the sensation of my breasts is like. Before I had the surgery I had heard that it was a bit like Novacaine. Now, I agree. If you've ever had Novacaine and felt your cheek on the outside - kinda poking it. Well, that's what it feels like when I poke my breasts. I don't know if that will change. But I must say, that that is a small price to pay for the reduction in my breast cancer risk.

That's my post for today. I am not sure how much I will post this week. I hope to put some time into completing MeiMei's adoption video/lifebook. Then, I plan to revamp my website - an ongoing goal.

I love to hear from you. So feel free to email me at bethisrael207@live.com.

Week 5 - Day 6

Today was another great day. Down to one round of Advil and two rounds of Tylenol. The real test came today. As you can see I passed. It was really important to me to be able to ride my bike and I did it today. No pain. No discomfort. Joy!! I loved it. My ride was short, but absolutely perfect!!

On the family side, JieJie had her first official riding lesson this morning. She had fun, so we will most likely sign her up for a bit of horse camp when she gets out of school. It feels good to see her so happy. I also want to sign her up for an art camp since she is so creative and happpy when she is doing art.

Then we will be off to camp for the summer without high speed internet. We actually have dial-up service. After a few years of going without internet, I decided that I could live with dial-up - so much better than nothing at all. Being isolated on a beautiful lake in the easternmost county in the US is great, but also lonely, so being connected is great.

JieJie's first communion is coming up at the end of the month, so my wonderful and thoughtful aunt stopped by to drop off a gift for her. I love my aunts. I am so lucky to have my aunts and my girls are so very lucky to have great aunts. They really are GREAT!!

Week 5 - Day 4 - ONE MONTH AGO!!

One month ago today I was being wheeled into a 14 1/2 hour surgery to reduce my risk of breast cancer. Today I am sitting at home (after a 45-minute workout) typing on my computer and feeling great. I am so happy that I did the surgery. I am relieved and ready to move beyond the waiting and wondering. There are still two more procedures for me to fine-tune my 'canvas', but nothing like the big surgery. So today is a very happy day!!!

Week 5 - Day 3

Today, I am feeling so much better. Yeah, I did get up at 5:30am to WATCH Mike do his workout. Baby steps. Getting out of bed. Maybe tomorrow I will actually do the workout with him again. Still getting adjusted to the lack of energy. BUT not for long. I just put a pot of coffee on - YIPPEE!! I admit I NEED IT. Hopefully caffeine will get me over this low energy hump. I can always quit - again.

On the recovery front - my scabs are falling off along with the glue that has held me in place. I am excited about seeing what I will look like without the brown scabs. I am also gearing up for Stage II. Realistically that won't happen until the fall, but I really want to move forward with it.

Although I have been wearing jeans and a sports bra, I find that I am so much more comfortable in a cami and sweatpants. Oh, I am so much more comfortable. So, today it comfy clothes all day. Since I plan to do some bookkeeping and cleaning it will work out just fine. I do worry about when I have to wear work clothes again and how that will feel. My original plan was to take 6 weeks off from work (I work for myself) so I think I will stick with that plan. Luckily some of my work is online, so that's been easy. It's the face-to-face career consultations and the traveling that I do that will be a bit more challenging. So if I give it another week and a half I should feel that much better.

Last night was my first night without Percocet. I took two Tylenol at 8pm and made it through the night. I was a bit uncomfortable, but not enough to wake up and take another pill. I also slept on my stomach - wow. I love sleeping on my back, but found that I had rolled over and if was fine. So, I guess these are some of the baby steps I am taking.

Last night I was so happy!!! Three of my favorite nephews stopped by with three of their friends on their way to a canoe trip on the St. John River. My oldest nephew said that this was something on his 'bucket list' and was excited about checking it off. They will be camping in snow at the start of their trip as they canoe 120 miles to the very northern part of Maine (Allagash). How exciting for them!! One of my nephews is a Registered Maine Guide and two of the friends have hiked the Appalachain Trail, so I think they are in good hands. However, when I asked about the temperature rating on their sleeping bags, they were talking about Walmart sleeping bags with a rating of 40 degrees. Yikes. It's going to be much colder than that at night. I gave them my LLBean bag with a much lower rating. They were impressed when they saw just how small it was once it was pushed inside the attach sack. Hopefully it will keep someone warm at night. Here are some pictures of my 'boys' with their little cousins.

Week 5 - Day 2

This week I am trying to follow my normal routine. So today I volunteered at JieJie's library. When I got home I realized that I am not exactly up to par. I am a bit tired and still a bit sore. Even though I want to be full strength, I am not really quite there. Yesterday I forgot to wear my binder and was quite sore at the end of the day. Maybe it was the 3 mile walk I took!! I am feeling like I am having a coffee withdrawal, but I gave up coffee months ago. So I guess it's just that I am tired. I would much rather post about all the fun stuff I am doing, but this blog is meant to be a resource of others who find themselves on a similar path at some point, so I need to be accurate.

Yesterday I talked to friend about her breast cancer and the choices she is facing regarding reconstruction. It's ironic because she was an inspiration to me as my surgery date was getting closer and whenever I was doubting my decision I would run into her and she would tell me that I really needed to move forward with the PBM. Now that my surgery is over, I am able to 'give back' with information, suggestions, etc that may be helpful to her as she makes reconstruction decisions. One of the things I can do now is direct people back to this blog. Hopefully it will help others see what the choice of PBM + DIEP is all about.

My original plan for my blog was to update it everyday for the 6-week recovery period, but there just isn't that much change from day-to-day so I am going to do a couple of updates each week instead. I will also update after follow-up medical appointments and will do daily updates as I prepare for Stage II of my reconstuction surgery.

I still need to call the bra-fitting, post-mastectomy specialist, but just don't have the energy yet. With summer coming and swimsuit season almost here I really need to get moving on this, but I am not ready yet. Maybe it's just that it is cold out again. Spring in Maine is so unpredictable. We can go from 80 degrees to 40 degress in the matter of hours. So, in the absence of warmth outside I am posted some pictures of my pretty flowers (taken with new Nikon D5000 camera).

Week 4 - Day 7

Okay, so I still need Tylenol and Advil. Today I tried to go with only a couple of Advil before church, but by 2:30 pm I was reaching for the Tylenol. Not sure if I am weak, or if it's pretty normal to still need some pain meds 4 weeks after surgery. Other than the numbness and tightness in my core I feel pretty normal. Today I even wore a sports bra. Yippee!! Not sure when I will move beyond a sports bra, but it certainly is a milestone. Again, feeling more like myself. For the past few days I have been getting away from all the elastic waist pants and moving into stretchy jeans. It works as longs as the waistline isn't on my scar.

All the scabbing seems to be flaking off now. Yeah, gross, but I want to detail some of the milestones for others who someday may be reading this as they face their own surgery. For me, as I was anticipating the surgery, hearing from others who walked this path before me was the most helpful of all. Knowing what the recovery was like was a key piece in having confidence that I could do this. Of course, I expected more pain and discomfort than I have had, but I think I paid the price in the hospital those first 2-3 days.

There are a few things I will have to get used to. The first is the numbness of my breasts. Actually my whole core is numb now, but most of that should return in time. With my breasts I am not expecting to be able to actually feel them again. Well, I can feel them but in a different way. Maybe in another post I will try to really describe the feeling. One other thing I need to get used to is my new "designer" bellybutton. It's not the same one I was born with. It's different. I am sure that in time I will become accustomed to it. Same with my breasts.

Tomorrow will mark the four week anniversary of my surgery. Wow, time has really flown. It really does seem like yesterday that we were heading out to Boston and I was wrapping my mind around the fact that I was having a bilateral mastectomy. Now four weeks later I have breasts and even wore a tank top today. Also, really loving the flat belly. I do need to ask my plastic surgeon if it will stay flat even if I eat alot!!! I got some of the Feed-the-Flap recipes from friends and have been making them myself and feeling the 'stretch'.

Tomorrow I plan to start working out with Mike at 5:30am - and hopefully will get back into my pre-surgery routine. I also need to do my arm stretches - I have neglected these and find it hard to reach for things up high.

Well, Week 4 is a wrap!! Tomorrow Week 5 begins. I don't have a plan on posts, but will come up with something.

Week 4 - Day 6

With school vacation this week, things have been a bit hectic. Today JieJie is off to Augusta for dress rehearsal for her baton recital next month. Thankfully one of the other moms was happy to take JieJie along with her own daughter. Recovery is good, but not good enough to drive an hour+, hang out for 4 hours and drive an hour+ home. So, instead I am watching MeiMei while Mike and two of his friends build the Sky Fort for the girls. Here are some photos from today.

Week 4 - Day 5

Today I woke up exhausted!! Not sure if it's because JieJie was in bed with us and was so excited about getting up and making Blueberry Buckle (see Feed-the-Flap recipes) for her Daddy's Birthday Breakfast. So for a couple of hours I just kept telling her it would be a few minutes, so finally, around 6am we were up and cooking in the kitchen. Then while the Blueberry Buckle was cooking, we headed upstairs with breakfast in bed for Daddy. After all that I really was exhausted. Hmmmm, seems some days I can do alot and others I can barely get out of bed. Not sure if that's just me or part of the recovery process.

Now it's 10am and I feeling a bit more normal and energetic. It's Mike's birthday and in all the pre-planning that I did before surgery I neglected to pre-buy birthday gifts. So, now we are all headed out to do some birthday shopping with the guest of honor. I do plan to make him an apple pie and Taco Soup (also under Feed-the-Flap recipes) for dinner. That's probably all I will be up for, but on my list is making chocolates for my Aunt, cleaning the house, the basement, preparing for a yard sale, paying bills, organizing finances, tinkering with my work website, cleaning out the garage, redoing the girls' rooms, dejunking, making Shutterfly books, doing MeiMei's lifebook and video.....well you get the picture.

Week 4 - Day 4

I feel great!! This morning I did most of my old workout routine with Mike. Stopped after about 2.5 miles to work on my arm stretches. It is beautiful outside so I plan to grab my camera and watch Mike work on the Sky Fort with the girls. Pictures will follow......

Week 4 - Day 3

Who would have thought that just barely three weeks out of surgery I would be doing some hiking in Acadia? Certainly not me!!! Granted it was light hiking - like walking around Eagle Lake and picnicing by the water, but it still counts as hiking in my book!  I've been wearing a binder around my middle which seems to make me more comfortable when walking. The binder is like a giant velcro band that covers my entire middle section. Not sure what it is for, but it feels good. I am down to taking just Tylenol and Advil now, with an occasional Percocet at night. It seems to be working.

Last night I did find that there was something I couldn't do. I just couldn't wash the girls' hair in the tub. I can't bend over very easily. Trying to get them to move from their tub to my shower so that I could help was torturous. In the end they did it, but it wasn't pretty. Mike realized when he came in from building the new swingset that maybe I am not 'totally' back to normal. I've fooled him into thinking I can do everything I could do before the surgery, but my secret escaped me last night.

My energy isn't really what it was before, but it's not bad. I am starting to think about spring projects. In time I might even feel like cooking again. Although that might be a ways away. We still have a couple of Feed-the-Flap leftovers, which I hope to stretch. I am so glad that we had that pre-surgery party. I had planned to cook up a bunch of food before surgery, but never had the time or the inclination. So, now, because our friends so generously provided potluck meals at our Feed-the-Flap party we still have food around. It is wonderful.

Here are so photos from our day at Acadia National Park. You've gotta love living an hour from Acadia. We ended our day with ice cream cones from Bill & Bob's in Bar Harbor.

Week 4 - Day 2

More monumental improvements today!! I mowed the lawn this morning and drove this afternoon. My brother, Tommy, and his son, Joe, stopped by for a nice visit today! He was funny. He remembers me telling him last summer about the surgery I was planning to have (PBM + DIEP) and didn't give it any further thought. I think his words were, "That's so far out there that no one would do it." So when he heard that I was in the middle of my surgery 3 weeks ago, he was quite surprised, to say the least. I liked the gasp when he saw my abdominal scar!! Now I can sit back and say, "Yah, I did that and I lived through it!" My recovery is going very smoothly. Mike says it's because he had me working out every morning for a few months before the surgery. You know, I might just be able to start doing that same workout again - maybe tomorrow!! Here I am mowing the lawn this morning.

Week 4 - Day 1

Update - Just added photos to Week 3, Day 4 (Drain Pull Day):

It was three weeks ago today that I had my surgery and I am proud to say that I am now taking real showers - no more sitting down and no more Marsupial Pouch. Getting the fourth and final drain out made that all possible. I would highly recommend the Marsupial Pouch to anyone and everyone who has hip and armpit drains.

I am still quite sore and tender. The little bit of pain that I have seems to be moving up from my abdomen to my chest. Still not really hitting the 1-10 pain scale - just discomfort. But, I have been able to do so many more things. For example, today I wore jeans for the first time in 3 weeks. I also rode my Green Machine very slowly around the driveway. And I have lost almost 10 lbs from my pre-surgery (feed-the-flap) weight. Oh, and my stomach is flat. Sure there is a scar across it that is 38 centimeters long and I have new designer belly button, but my belly is flat. My breasts seem to be loosening up each day and becoming more like breasts. For a while they were getting quite hard, but seem to be adjusting to their new placement. It is hard to imagine that my belly fat is now sitting in my breasts. It's also hard to imagine just how uncomfortable I was just 3 weeks ago -- the phlegm ball in my throat that seemed to be suffocating me, the hallucinations from the morphine and the steady stream of medical professionals checking on me.

I am pleased with the results - even if I have only done Stage I. Stages II and III are to come. I can do Stage II this summer, but think I will wait until Fall. Although, I would love to have my new body ready for summer. But I am a bit worried about undergoing surgery again. I can remember everything and there is nothing pleasant about the recovery area. Waking up from 14+ hours of surgery was tough. Waking up from 14+ hours of surgery with a phlegm ball was even tougher. Waking up from 14+ hours of surgery with a sensitivity to morphine was toughest of all.

So, other than a little bit of nerve pain down my left arm I feel pretty good. I still get tired mid-day. I get as much walking in as I can and feel much better after exercising. My armpits have been uncomfortable, but with the arm exercises they are feeling a little bit better.

On the homefront, we are still benefitting from the generosity of friends. Yesterday we finished up Brenda's lasagne and chicken/broccoli casserole. We still have some leftovers from the Feed-the-Flap party that will carry us for a few more meals. We are truly blessed to have so many kind and generous friends.

Week 3 - Day 5

Another little difference is understanding my limitations and accepting them. When we were planning our trip to Boston this week I wanted so much to keep heading south to RI or CT to visit with a an old friend who was so suppportive and a key piece to the puzzle when I was on the fence with surgery. She and I talked for a couple of hours the night before I left for Boston for the surgery and she was just exactly what I needed at that point in time. So, I thought that if we could just head south a bit after my last drain is pulled then we could visit with her. Plus my nephew lives nearby and we could squeeze a visit in with him. BUT, I am now accepting my physical limitations. So, instead of RI and CT we are staying put in ME. That's okay. I realize that I can't burn the candle on both ends or my recovery will be very slow. Even now, everything takes a bit longer. With the drains (even one) I dreaded the whole shower routine. A slight pull on the drain and pain would shoot through my body.

It's very tough to do less. I feel like I should be able to do everything I was doing before, but when your entire core is sore, tight and funky feeling it makes movement difficult. One thing I can do without much difficulty is sit at my computer, thus all the blog posts.

On our little mini vacation in southern Maine we have been able to enjoy the things we love about Maine. We love lighthouses and beaches. My favorite beach of all time is Pine Point Beach, so we always make a point of going there, especially when the tide is out. This beach makes me very very happy!!! So even though I have had to realize that I can't do all the things I used to do (for now) I can still enjoy so many things, particularly when I am with my family.

Just want to thank my friends again for all the things they have been doing. We truly are appreciative of everything and the food is always delicious. I need to add more of your recipes to my Feed the Flap page. Thank you!!!

LIVE UPDATE: By now you have figured out that I pre-post sometimes. Anyway, today was my first drain-less shower - heaven!!! No twinges when the drain would pull or I would accidently drop the drain. No more marsupial pouch for me. I will post photos from yesterday's visit to Dr. Tobias' office when I get home. This morning's breakfast was absolutely wonderful. I consider today to be the first day of my recovery......I really can't tell you just how nice it is to be without that last drain. I have a binder wrapped around my mid-section, but it feels fabulous and the best part is that I can pull my waistband up over the binder - again, like a normal person. Ahhhhhhh.......

Week 3 - Day 4

Since today is the day I will get my fourth and final tube out, I want to once again thank my medical team. (See "My Team:" at top of blog). My girls are going with us on this trip and are quite excited. They know we 'go to Boston', but they don't really know what that means, so on this trip they get to 'go to Boston'. They probably won't go in while the drain is pulled, but they will get to meet some of my wonderful team.

So today, let's see how I have changed. Well, when it comes to medical care, my experience has taught me to shop around. There is certainly nothing wrong with going local; however sometimes sacrificing the convenience of local for the expertise of a place like Boston (Beth Israel) is worth the trade off. I have learned to keep looking for what you want or need until you find it. Just because you have a consultation with someone and you like them does not mean you should stop there. Find out where they were trained and then have a consult with the person who trained them. Keep going until you feel comfortable. Don't settle. Again you will see photos of my medical team!! Dr. Tobias was prepared for the photoshoot this time!! And Maria straightened her hair for the event!!! We have an exceptionally long wait for the drain pull, but it was worth the wait and once again, Malika did a super job!! I felt a little twinge (not pain) on the opposite side of the where the drain was located and Maria said that it was the drain on the inside. That thing must have been a foot long on the inside!!! Soooooo glad they are gone!!

It's not like I have a crystal ball, but I am wondering what might have happened if I hadn't been at Beth Israel when I had the bad moments coming out of anesthesia and the whole day I was on morphine. I don't even want to think about it. I do worry about my next operation (Stage II) which is much shorter, but I know I have the best medical care in the world. They got me through the first operation and I am confident they can do it again.

So, yes, life is different. You can face life's challenges. You can be gutsy. You can choose your medical team. You can do it!!!

JieJie took lots of photos on Final Drain Pull Day. She is becoming a very good photographer. One picture I have been waiting to take is me with a chocolate frosted doughnut and a coffee coolata. The doughnut was delicious, but the coolate did not meet expectations. So, maybe I don't need caffeine after all.

We also got to enjoy a meal at Souper Salad. They had stopped serving beef potpies for the season, but the clam chowder was still good. It was very nice, so once again we got to enjoy a nice meal on the patio.  The last photo is of JieJie, our official photographer for the day!!!

Week 3 - Day 3

Today my post is dedicated to Mike, the unsung hero in all of this. This week I am looking at how life is different now. Again, most of the changes are subtle, but this particular one isn't quite so subtle. I can no longer look at my husband without seeing and feeling the love he has for me. Anyone who knows me knows that I have always shared that Mike is the most wonderful husband in the world, because he cooks, cleans, does laundry, takes great care of our girls, but he is so much more. He is genuinely caring, loving, tender, patient and gentle. Those are just the words I can come up with, there are other qualities that I just can't wrap words around.

During all of this he never waivered or made me hurry up with my decision or persuaded me in any way, he is caring is such an unassuming way. Protective even. The night in the hospital when he pulled the plugs off the machine I was hooked up to and got me into the bathroom is one thing I will never forget. He knows exactly what to do when I am in need!!! He has had to strip and clean my drains since leaving the hospital, he has been so gentle when doing this. It's really tough for me since the drain is coming out of MY body, but I don't have to worry that he is going to pull on it and cause me pain. When I am achy or tired or simply lazy he carries all the weight. He gets the girls dinner, gets them ready for bed, reads to them, then takes care of me, my drains, my bed (my pillows have to be just right for proper sleeping!). Over the years I have certainly tested his patience, but the depth of his patience seems unending. Right now he is living with 3 needy girls. AND he is hanging in there.

When you get married you don't always realize just how important that decision is until you are tested. Is this the person you can trust to walk you to the bathroom in your johnny? Is this the person who will endure night after night on a cot when he could be staying in a first class hotel? Is this the person who won't leave your side in the recovery room so that he can get something to eat after a very long night of waiting for you to come out of surgery? Is this the person who gives you backrubs when his back is the one that really needs it? Is this the person who gives you the last piece of his favorite pie? Is this the person who will take six weeks off from work to make sure that you are doing what you need to do to recover? Is this the person who will go out and get you new milk after you take a sip of milk from March 31st and it's now April 10th? Is this the person who can laugh with you when you are being dramatic or silly? Is this the person you can trust with your worries and fears? Is this the person you want to sit with on an old porch watching the sun set? When I look at Mike I can say, "YES!" to each and every one of these questions. I hope that I am never tested, but if I am I certainly have a great and caring role model. Again, my gratitude to his mom. He is my unsung hero. He doesn't get the cards or the flowers or the hugs or the phone calls. But he did have a friend come over to get him out to go golfing!!! And what a difference that made!!

"Love is patient; love is kind; love is not envious or boastful or arrogant or rude. It does not insist on its own way; it is not irritable or resentful; it does not rejoice in wrongdoing, but rejoices in the truth. It bears all things, believes all things, hopes all things, endures all things."

Pathology Update:

My breast surgeon called with my pathology report. Although I wasn't worried about having invasive cancer (yet), I still wanted to know. So, what I had was LCIS in my right breast, which is not the breast that had endured 3 previous biopsies. My right breast hadn't given me any problems and I had assumed that it would be clear of an non-invasive or invasive cancer. I know that my path is not the right path for everyone, but I am certainly relieved. It was a big decision and the recovery is big, but worth the peace of mind.

Week 3 - Day 2

I may have mentioned this "Brave Me" canvas before; but it certainly deserves mentioning again. As I reflect on the subtle differences in me as a result of my decision to choose a prophylactic bilateral mastectomy with immediate DIEP reconstruction, I can't help but think of this canvas and the friend behind the canvas. When she gave this to me it was two weeks before my surgery. I was 'almost' ready, there were a few puzzle pieces that needed to fall into place, but I was more ready than not. BUT one thing I didn't really feel was 'brave'. Another friend has said that I was an 'inspiration'. All these were before the surgery. I really just felt like it was my own way of dealing with high risk and that most people when faced with this would choose to do the same thing (sooner or later). I didn't feel special, or brave, or inspirational. PLUS I hadn't actually done anything at that point and knew that I could back out right up until they sent me off to surgery.

Well, now it's been two weeks since my recovery began AND I feel brave and proud and happy and at peace with my decision. And maybe in there somewhere is some inspiration. I can honestly say that once I came off the morphine (to which I have a sensitivity) I have never once doubted my decision. That day, two weeks ago, when I was dealing with the phlegm ball and thought I would never leave the hospital alive I had some doubts, many of them morphine induced. My body is different - which is still pretty uncomfortable and ultra-sensitive, but that's okay. I don't have to worry about my risk of breast cancer. I don't have mammograms, MRIs, ultrasounds, biopsies, etc. I sleep well at night, even if I am propped up on pillows so that I won't roll over.

In the end, I am at peace. Others could see something in me that I couldn't see until I had come through the surgery. I am proud. BRAVE ME! And I hope that through some of my blogging or my openess that I can serve as an inspiration to others who are facing a similar journey. I just got a get-well card from one of my beloved aunts and she called me 'gutsy'.  I like that!!!

Physical Update: Today is already better than yesterday. The only percocet I get during the day is in the morning, so when getting up and showering that eases some of the discomfort. For the rest of the day it is Tylenol and Advil. I do feel the ultra-sensitivity all day long which is rather bothersome, but can deal with it. MeiMei asked this morning when she could give me a 'real' hug. Right now they give leg hugs and shoulder hugs, but not belly hugs. Maybe when the drain is pulled. It stills feels so funky and weird and uncomfortable, but maybe a few good hugs with my girls will make it all feel better!!!

Week 3 - Day 1

This was me a few minutes ago. It's cold here. Or at least I was cold. Plus, if you look closely you can see that I am pained a bit. Uncomfortable is the best word I can come up with. The pain doesn't really rate the 'official' pain chart of 1-10. But uncomfortable works. It might be the 2 foot tube sticking out of my hip. It might be that I am taking only Tylenol and Advil during the day. It might be simply that it is cold out. I was trying to watch Mike put the SkyFort together, but decided it was time to blog. This week I want to talk about some of the ways my life is different.

Of course there are no major revelations, but some more subtle things that are different. From the beginning of this blog I have talked about how important my friends and family have been to me during this journey. I could never have gotten this far without their limitless support and encouragement every step of the way. I will be eternally grateful to them for all they have done for me and my family. I think I have the best circle of friends. When your friends become your family and your family becomes your friends you are truly blessed. And I have been blessed a thousand times over.

So just how have these wonderful people helped us? That's a great question since it is always hard to know what to do for others who are in a tough situation - UNTIL you have been there. It's the big things (thank you Aunt Dot) and the little things. It's thinking about what might ease the burden a bit, like preparing a home-cooked meal; offering to watch my girls; cleaning my house; sending a note or card or even a heartfelt message on FB; making a phone call or a special visit; sending a bouquet of flowers or fruit; creating art; or sending prayers. All of these things make a huge difference. And I am grateful to each and every one of our friends for all they have done to help us. I will certainly know better how to help next time I have the opportunity to help one of them.

Just this morning at 7am one friend dropped off tonight's dinner (chicken, mashed potato.... comfort food) for us along with some delicious blueberry crumb bars (I couldn't wait Marcy). I know how busy everyone is and I am so appreciative of what they are doing for me.

Last week I went in to get my long awaited haircut from Debbie (Options Spa) and she gave me the cut. I never would have expected that. She said that she couldn't make a casserole, but that she could cut hair and she did that for me.

I still get tears in my eyes when I think about all the thoughtful, heartfelt things that people do. You wouldn't believe the incredible food that my friends have sent our way. I am including the recipes at the top of the blog so that everyone can enjoy them.

So, today my life is different in the sense that I am aware of who my friends are and just how much they mean to me. Sometimes life gets busy and you lose touch with those people you truly care for, so this has served as a reminder not to let that happen.

Week 2 - Day 7

Okay, so it's been a few days since I have posted. Let me see if I feel any different from the pins and needles of Friday's post. No, not really. I think the whole numb feeling will pass in time, but it's a funky and wierd feeling and I don't like it. BUT, this feeling didn't hold me back from attending the annual auction at my daughter's school on Saturday night. Here I am all dressed up with my new do, while still sporting one drain, hidden under my size 2x top. I had a blast at the school auction; HOWEVER I paid the price the next day. I was exhausted, tired, cranky and very sore. Thank God, for Gary and Brenda, who came over with dinner all prepared and pitched in with the girls and helped Mike work on the girls' SkyFort!! I watched Brenda play with my kids and wished I had the energy to do that. I enjoyed seeing them happy and carefree. Here's a picture of Brenda doing some planting with them. One of the many things I am grateful for is my friends. I cherish them and could not be managing my recovery as well as I am without them (and Mike).

Week 2 - Day 6

I have been home for over a week now. Am feeling good, but also starting to feel lots of numbness in chest/abdominal area. From everything I have learned this is normal, but it just feels funky and weird. Numbness, I have learned, is not something you can actually convey to someone else with words. People will associate it with novacaine, or tingly feet (pins and needles) or an old scar, but really none of that fits this. Just odd. My assumption is that some of this will dissipate and the rest I will become my new normal. Right now it isn't my new normal and it's rather uncomfortable when clothing touches it.  Next week I plan to post each day on some of the ways my life is different now, almost 2 weeks after surgery. I also plan to include more real live photos to track my healing progress (no pictures of incisions or anything awkward so don't worry). Have a nice weekend.

Week 2 - Day 5

Last Week: Going home day!!! We knew on Thursday that we would probably be ready to go home on Friday. We told the girls first then called everyone else. Plus our friend, PA, stopped by on Thursday night when we Skyped the girls to tell them. They were thrilled and we felt ready to move out, even though we loved the staff. So, Friday morning started with a 5am walk around the nurses' station, a shower unassisted by nursing staff, getting dressed in street clothes, packing up and heading home. It was a very exciting day. We had requested that we leave between 10 and 12 and we were out the door by 10:30. I had always understood that discharge was this time consuming, very delayed event, so we were thrilled.

We did have to do some picture taking of Dr. Curtis, Maria and Petrya before we left. They were all so wonderful. I didn't say much about Tamara, but she was an angel too. When Petrya left on Thursday, Tamara took over, then Petrya returned on Friday am to help us get ourselves together. Hopefully each and every one of the nurses (as well as Maria and the doctors) who cared for me on CC6 know that they are always welcome to our home!!! I think I promised Petrya that we would find some very good hiking trails for her in Acadia. On my last walk around the nurses station the department manager (I think) stopped us and was shocked. She lit right up and said something like, "You look sooooooooooooo much better than when we met. I didn't even recognize you!" I may have paraphrased wrong, but it was a great compliment. I had on street clothes and no longer sported a johnny. I had on make-up, well under eye corrector (good-bye bags) and lipstick. My hair was clean and I was happy. Mike was by my side. A few minutes later he wheeled me out to the car and we headed home. On the way home we stopped at Aunt Sally's house in Freeport, where I felt a bit odd. It was sensory stuff....like way too much sunshine and movement. But that passed by the time we got back to Bangor. The girls were happy. Dot was relieved. And were finally home. This had been a year and the half in the making and now we were on the road to recovery.

The photos I have included: my last breakfast at BIDMC. It was oatmeal and English muffins. We didn't know we had to ask for brown sugar and butter. Every meal had been great, so when this one didn't hold a candle to the others, we knew it was time to go. Here's a picture of Mike working. Poor guy slept on a cot for three nights and never ever complained. Then there is me in street clothes. I was so so happy!!!! Next is the room number. Then you will see me with Dr. Curtis (Dr. Tobias's Breast Fellow) who will be setting up his own practice when he is finished with this assignment. I feel blessed to have crossed paths with him. In this photo is Maria, a true Godsend. No one can put you at ease like Maria. She is funny, caring, knowledgeable, helpful and always available. The last photo is with Petrya, who was outstanding in every way. My other 'team members' can be found under MY TEAM at the top of the home page.

This Week: Today I woke up for the first time in a week and a half with ONLY ONE DRAIN. I am thrilled. I am still quite sore and numb, but I assume that that will last for quite awhile. I will go back and post pictures from yesterday's visit with Dr. Tobias, Maria and Malika (my new angel) on yesterday's follow-up post. Today I am finally going to get my hair cut!!! I will post the new do!! For over a year I have been growing my hair out thinking that if I pulled it back in the hospital it would be easier and look better. The reality is that if I had had a short cut it would have been easier. Looking better isn't really a concern during those first few days when you are simply trying to adjust. Greasy hair, bangs pushed up to the side and the rest just hanging there is not a pretty picture, BUT they do not have mirrors in your room. And Mike didn't seem to mind how I looked. He was just happy that I wasn't seeing things or imagining things anymore. I plan to post more FAQ today. More pictures coming!!!

Mike's office staff had this fruit bouquet delivered today!! Wonderful. You will see MeiMei's hand reaching for it...... I also had my hair cut and my hair stylest 'gave' me the cut. She said that she isn't so good at casseroles or things like that, but she wanted to do something nice for me. Of course, it made me cry!! It is amazing how kind the people in our lives have been. What people do is across the board from cards, to flowers, to food, to phone calls, to visits, to Mass cards, to sending along special prayers and quotes, it all means so much to me. I have a much greater appreciation of the things I can do for others now that I have been the recipient of such a wonderful outpouring of love and support. Thank you all!!!