Guest Blog

Check out this link http://donotworryaboutme.blogspot.com/2012/11/guest-blogger-1.html#comment-form for a guest blog I wrote for a friend about to accomplish two amazing goals of running a half marathon and having her prophylactic bilateral mastectomy. 

Finally

Remember that blood test I was complaining about back in July saying I was so frustrated with hospitals?  I finally was able to get it done this week.  That's over 2 months.  Now it's not like I was on the phone fighting this one out constantly.  I would remember to call on a weekend, but you can't just call and leave a message because on weekends you either need to page the doctor for an emergency or wait until Monday.  Well the chances of me remembering to call on Monday were very slim. Then when I did remember, I didn't remember to call until after 4:00.  I would leave a message and the nurse wouldn't have a chance to call me back until the next day.  So then I'd get the message the next day and think that I could call back on a break or lunch at work, but that doesn't happen because I have 6,000 other things to do during that short time.   So I would forget to call back or call again too late or on a weekend.  It's just a crazy cycle.

Book Review: That's Why I'm Here

There's another book that I read this summer that I feel compelled to tell others about: That's Why I'm Here: The Chris and Stefanie Spielman Story.

Mitch recommended we get this book; something he caught on espn.com with some substance.  We read it together (with simultaneous book marks not literally together aloud).  It was a good combination of football for Mitch and a beautiful love story for me. Stefanie is such an example of strength, hope, determination, and above all faith.  Chris, while incredibly dedicated to football, was able to learn through Stefanie what the important things in life really are.  It was definitely sad as Stefanie eventually lost her battle, but the inspiring moments made the sad worthwhile.  I am amazed by the courage it took to write this book.  Chris shares openly about the best and worst of times and how their family was able to handle it all with faith. One of my favorite parts was the forward written by their daughter Madison--such beautiful words.  I'd highly recommend everyone checks out this inspirational story!

 

6 months!

It was exactly 6 months ago today that I had surgery.  It feels like a lifetime ago!  I had a check with Dr. J today.  I had noticed a hard spot on my side that I was a little concerned about.  It felt like maybe a bit of scar tissue, which in this case isn't a good thing.  He decided that it is just a couple layers of the alloderm that were overlapping and it's taking longer for my cells to take over this thicker piece.  (In case you forgot, alloderm is the cadaver tissue that was used to create a patch for my muscle.)  He also agreed that we need to do a little fat grafting to eliminate some ripples and divots.  He made it sound like it'll be an easy procedure--just an hour surgery and a few days of light duty. Hopefully I can schedule it over a short break from school in October or November.  I have a little research to do though before I completely understand and agree to this "easy procedure." 

that's my great doctor!!

http://www.greenbaypressgazette.com/article/20120802/GPG0101/308020121/Breast-cancer-survivors-ride-Zippin-Pippin

Disappointed in hospitals

I have had a lot of frustrating experiences lately with hospitals that have left me feeling very disappointed.  We have 4 local competing hospitals.  They spend a lot of money advertising their greatness, but I'm beginning to think they should all put that money elsewhere.  There was the whole fiasco before my mastectomy in which one hospital forgot to order something essential and forced me to wait and wait and wait and not tell me the truth about why we were waiting.  We got 2 free meal tickets from the cafeteria as an apology for that.  Because of this frustrating experience when I went looking into gynecologic oncologist consult with about my ovarian cancers risks, I was open to trying someone affiliated with a hospital I've never really had any experiences at.  Luckily, our insurance can go just about anywhere, so that wasn't a concern. 

Initially, I love it.  Our school district has some special arrangements with this hospital providing a nurse right at our school and a direct line for making appointments so that we have less wait time.  I really like the doctor and his nurse.  However, he's only here two days a month.  This week I called the number to schedule the lab work that I have done every 3 months.  The direct line couldn't schedule that for me, so they connected me to the regular department, who couldn't schedule that for me, and sent me to another department.  At this department I was told, "He's only here 2 Fridays a month, so why don't you call back next week Friday when he's here."  Really? Now I really didn't explain to this third person I was transferred to what I was calling for.  I just said that I have a question for the doctor.  What if I had an urgent need to talk to this doctor, like after another surgery that's in my not so distant future, your advice is really call back 9 days later?  This wasn't acceptable to me, I controlled my scorn for the person on the other end and simply asked for the number to contact his larger office location where he spends the majority of his time.  About 2 minutes later, she was still saying, "Ah...um...hmmm" and flipping through things.  In that time, I was able to pull up the website and easily find the number.  I let her keep looking for another minute (I love that our phone has a timing feature on it) and then told her, "I just looked it up on your website, is it this...?"  I quickly reconnected to the other office.  I got my question answered, labs ordered, and was told "If they ever respond like that again to your question, please let us know."

Now that the lab work had been ordered, I just needed to find the time to stop there and get the quick blood draw.  I had to find a time when I could fast and not have to bring 2 young children with me.  I called the general hospital number, explained that my doctor sent in a lab order, do I need an appointment to come to the lab?  I was told, "Nope, they are open 24 hours a day, no appointment necessary."  GREAT!  I figured I could go right away when I woke up on Saturday morning.  Fasting and kids wouldn't be a problem.  You know where this is going already, I'm sure.  I arrived as soon as possible in the morning at 6:20 and they definitely were not open 24 hours a day.  I was told, "Sorry, they open at 7:00 but the person coming in today is usually early, so it might not be that long of a wait." She was right, at 6:45 they were ready to check me in.  But of course . . . they couldn't find my lab order.  No blood draw today.  When I arrived back home, to still sleeping husband and children, I called my doctors larger office location, hoping to leave a message for the doctor.  The paging service picked up and person rudely said to me "We don't do messages.  You'll have to call back Monday morning or page the doctor now."  Fine, not that big of a deal, just annoying.  I'll call back but when I finally remember it will probably be more like Wednesday. 

The worst part of this is that I was feeling really good about finding a doctor that is up on the newest research and methods, open to different options, and that I like.  This experience is making me question whether this is the right place for surgery #2.  They do have competition out there and I have probably 2-3 years before I will actually do surgery #2.  Maybe a need to schedule a consultation with another doctor.

5 months

It is 5 months today since my prophylactic bilateral mastectomy with direct to implant reconstruction.  Time flies once you have drains out!  I will not have to see my breast surgeon again until it has been 1 year.  I'll have another MRI to make sure there is no cancer growth in the small amount of tissue that I have left in the skin that was spared.  My reconstruction looks good.  I see my plastic surgeon at 6 months to check everything out again.  There are bumps, ripples, and divots at times that I'm not thrilled about, but we won't do anything about that until at least a year because they still have time to go away on their own.  I haven't had a need for any additional physical therapy and have shown ZERO signs of lymphedema.  I can run, do regular push ups (just some after too many, it doesn't feel so good), do regular ab work (at first I would involuntarily flex my chest muscles whenever I'd do sit ups, but now it's ok), lift whatever weight items I want, sleep on my side (stomach still isn't comfy), and forget occasionally that I have foreign objects in my body. The only problems I have still would be an occasional squeak, getting used to the feeling of them moving inside of me, and muscle tightness which doesn't usually occur until after I've already realized that I've done too much.  All things I'm getting used to. 

Our summer

I haven't posted in a while. We've had a busy summer (and we aren't even at the ages where the whole summer sports league things yet!).  I've had a lot to say, but just didn't know how to share some of it.  So here it all is in one large clump of disorganized thoughts.
   
We celebrated my 30th Birthday.  This is was big for me.  30 is the age in which my risks begin their big increase.  30 means closer to 31, which is the age of the youngest diagnosis in our family.  For a long time, I had a big fear of turning 30. It seemed to come with this big dread, a looming sense of bad things to come. But it can now say that I'm not scared.  I turned 30 during a beautiful vacation and cancer didn't cross my mind.  Picture curly red haired Merida in her Scottish accent saying, "If you had the chance to change your fate, would you?" Yes, Merida.  I did and it feels good. In my case, no one changed into a bear, at least yet!

We passed the anniversary of my miscarriage, which happened to coincide with my birthday.  I snuck right past the day that would have been my due date a while ago without really thinking of it because I was busy recovering from surgery at that point.  I did stop and think about this anniversary a little bit.  I wasn't incredibly sad or anything, just thinking about how very different my life would be.  We definitely would have loved the little guy. (Yes, I think it was a boy even though it was way too early to know and sometimes I like to think of him as Gerald Jr. because Dad wanted a Gerald Jr.  The girls love the name Gerald probably from the Elephant and Piggie stories or Giraffe Can't Dance and even named a doll Gerald, but sorry Dad, I'm not having one.)  As much as we would have loved another addition to our family, I really feel like I'm right where I need to be.  I understand now that everything happens for a reason.  When I look back at everything that's happened over the last year, it's shocking to think that if we had that child, I wouldn't have even known or done so many of these things.  I would still be nursing.  I still at this point wouldn't have been able to have a mammogram or MRI.  I would have been completely unaware of what was going on inside me.  I really think that the loss of that child really saved me. 

That's really scary to think about.  So I'll stop there and I'll tell you about the great vacation Mitch planned to keep me distracted during the week that these two big events happened.  We were able to stay in an AMAZING vacation house in Phillips, WI.  We had 2 days to ourselves there and then our parents joined us for 2 more days of fun together.  Beach, boating, fishing, antiques, fireworks, 5K race, WI Concrete Park (sounds strange, is strange), an Art Festival, a zoo trip, good food, and Spotted Cow on tap throughout it all! According to the girls, "That was the best vacation ever!" Little do they know that they've never really been on any other vacation. 

I'm preparing to run again in the Fox Cities Marathon as part of a relay team. Silly me, volunteered to run the longest leg of the race.  I've been running more this summer than I ever have before, trying for 15 miles or more a week.

I spent a few days of nap time this summer writing a seething response to this man.  He's a medical journalist who gave a speech at TEDMED called "Pre-games, previvors, and pre-death: My TEDMED talk on what medicine can learn from Moneyball," He asserts that one of the many problems with our health care system is the overtreatment of certain diseases particularly pre-diseases. He used a number of examples, but focused heavily on the treatment of pre-cancer (what he felt was the best way to describe those at a higher risk due to genetic mutations.) He specifically pokes fun at the term "Previvior" that the organization Facing Our Risk of Cancer Empowered has coined (more on my opinions of that term in another post). Oransky believes that just because signs, symptoms, or tests show that you are likely to develop a disease, it doesn't mean you actually will. He even went so far as to crack a joke that the next reality show produced my Mark Brunett should be placing "Previvors" on an island and seeing who develops cancer.  I am a person who often uses humor to help break the tension of tough situations, but I don't find that joke funny at all.  I find it quite offensive.  He didn't crack a joke about someone breaking a bone, he's talking about someone's life. Comparing acne to cancer is an insult to anyone who has had cancer or love and cared for someone with cancer.  After sharing my opinions on his assertions, I asked him for a public apology.  His apology hasn't come yet, I should just "let it go."

My uncle passed away last week after a short battle with pancreatic cancer.  He was a great guy, loved by many (his obitutary took two columns to list all the family that survived him thanks to my dad's huge family). He was one of my dad's best friends throughout high school, who then married my dad's sister. Our families spent a lot of time together throughout my childhood. He had a great smile and laugh and a strength and calmness throughout the toughest times. After his initial diagnosis, he was expected to have more time, but it didn't quite work out that way. The time he had though, he was able to spend with his family living and loving each day.  I was honored to be a part of celebrating his life this weekend and I will always remember that first line of my reading (thanks to the the Deacon and my brother telling me I nailed it), "The just man, though he die early, shall be at rest." 

Another family out there

Here's a story of another family out there with the BRCA mutation.  It's a touching story of twin sisters adopted at birth reuniting with family because of the mutation.

http://today.msnbc.msn.com/id/3041426/n ... ay_health/

(Scroll down to video.. 2nd one)

Happy Father's Day

I am so blessed to have a fantastic husband and an amazing dad to have spent Father's Day with.  I love you both very much.  I am lucky to have you in our lives. 

The Shack: A book recommendation

At this time of the year, I try to put together a list of book recommendations for all of my students to read over the summer months.  I thought I'd offer a recommendation for adults as well here.  Please consider checking out The Shack by William Paul Young. 

It was given to me as a gift and the giver could not have known what a good choice this really was for me.  Originally though, I was quite scared off by it.  I'm quite a baby about scary things--no scary movies, no scary books.  You can tell right from the cover that something creepy or awful happens in that shack (and it does). But after having a hard time making it through the style of Extremely Loud and Incredibly Close, this book looked like it would be a good read. 

So I did exactly what I tell my students not to do.  I jumped right into the book without thinking at all about what the book would be like.  I didn't read the front or back cover (more than just the title and creepy shack picture).  I didn't read the small text under the title saying, "Where tragedy confronts eternity." I did not have any clue that this book would involve religion, and thus I didn't know any of the controversy surrounding it.  Although I will admit had I known it was controversial, I may have picked it up earlier.  I really dislike when people or organizations tell you not to read something; I can read it and make my own decision.

I could not put this book down during the first 1/3 as the tragedy was unfolding.  It was suspenseful, scary, every parent's worst nightmare, but it was also beautifully written and powerful.  The next 2/3 of the the book describes how this father deals with his relationship with God in the wake of this tragedy. 

I was raised Catholic, attended a Catholic college, and am now a member of one of the most non-traditional Catholic churches in the area (yes, such a thing can exist).  Despite having a good understanding of God and taking one of my two mandatory theology courses in college that centered all around it, I've never understood the role of all the pain and tragedy in our world.  Before surgery even, I struggled with the idea that I'm supposed to be trusting in God, but here I am taking things into my own hands drastically altering my life.  Am I saying that I don't trust in Him?  I'm altering His plan for me?  What does this do for our relationship?  The Shack had a beautiful way of showing God's presence even within such tragedy the characters faced, making my own problems seem incredibly clear.  Despite what critics might say about it, it helped me see God in a different light, understand more of relationships, and helped me clarify a number of things.  If you are open to it, consider reading it.  It won't take long and if you dislike it or disagree with it, then it will just have served to clarify your own beliefs, ideas, and relationship with God from your own understandings. 

Care free

Ah...to be care free again

12 week update

It's been 12 weeks since surgery. This is a big milestone!  At this point, it is safe to say that all the skin survived the surgery and has a sufficient blood supply to remain healthy for a long time.  I've made it through the point where infection was major a concern.  If my body was going to reject the alloderm patch they used, it would have already by now.  I'm showing zero signs of capsular contracture, which would be my body rejecting the implant.  AND my hospital bills have been paid by insurance!  I made the transition back to work just fine.  I'm back to running.  I ran on a relay team for the Cellcom Green Bay Marathon. Thanks to the race being cancelled part way through due to the hot weather, all I have to show for it is a bad sun burn (photo courtesy of Aila).  I'm really back to a new version of normal.

There have been a few side effects that have taken some getting used to.  I knew these things going into it thanks to the women of FORCE sharing so openly about what life would be like after surgery.  But like with pregnancy, reading about labor and actually being in labor is incredibly different.  So...things you may not have known happen after mastectomy:

1. I have no feeling over a large portion of my upper body.  I knew going into it that I'd lose feeling in my chest area, but I was surprised by having no feeling in my underarms, on my sides, and even a small area on my back by my shoulder blades.  It's strange, but if I'm nervous or uncomfortable I will itch that area on my side even though I cannot feel it and do not feel an itch there at all.  There is a small area right in the center of my chest that I can feel.  I discovered it one day while working out because I could feel some drops of sweat! Never been that excited about sweat before.  There's a small chance feeling will come back eventually, but it will likely not be the entire area effected, just small portions of it.
2. I get really cold or really hot easily.  I have 3 pounds of semi-liquid in me that takes the temperature of the air around me.  I haven't had major problems with it yet just a noticeable temperature difference, but I'm concerned about what winter will be like. From the outside the layers go: skin, muscle, implant, chest wall.  The implant gets cold, making the muscle on top of it cold.  The muscle only has a thin layer of skin to keep it warm when usually it would have a layer of fat as well.  I've heard that if if gets really cold the muscle will then start spasming. 
3. Swimming was interesting. There's the temperature issue from above.  It's also a very different sensation having something that floats stuffed inside you. 
4. I occasionally squeak. Picture the sound of an old rocking chair.  Hopefully this is done now and no longer comes back.
5. It is amazing how much better things are looking since those first few weeks!  I see why people sometimes post pictures.  While I will not be posting any, I did take photos along the way for my own personal use (that are securely buried and locked away in hidden files on my computer).  It was something a friend who had been through it already recommended.  I took one weekly in the same place, from the same angle.   On days when I felt like nothing was getting any better, I'd just look through those and I could really see the progress.  It is honestly amazing was plastic surgeons can do with reconstruction.  When I first considered this surgery, I google for pictures of mastectomy/reconstruction examples and ended up in tears thinking of how I did not want to look like that.  I did this same google the other day so that I could see again for a comparison.  I'm so thankful that my doctors were able to everything they could make me look good! 

Why do I want to get back to exercising so soon?

Why do I want to get back to exercising so soon?
This is why.  It's a link to a great article a friend sent me about the importance of exercise during and after breast cancer treatment.  Hopefully the YMCA Livestrong program starting in Green Bay or the YWCA Encore program can help others in the area get back to exercising as well.

Pull ups

Yes, this post is about pull ups and I'm not talking about Adrienne's night time pink princess pull ups.  For the last three weeks, I've been going to Zumba on Tuesday nights.  Tuesday used to be my toughest work out night--the day I had "group personal training" with a really small group :)  Pull ups were my enemy.  I think I have a mental block against them stemming from childhood.  Too many gym classes with failed attempts at the flexed arm hang, too much embarrassment over not being able to the monkey bars on the playground.  I hated every second of training with them and knew I'd be in for a tough night whenever I saw that stupid rack pulled out. With Chrystal's help I was able to learn to do them.  I still didn't enjoy them, but I could tolerate them and feel a small sense of accomplishment after.

So back at Energy the last few weeks, I see the gadgets and goodies Chrystal has out for other training sessions.  Of course, she has the pull up rack out.  It's like it's sitting there taunting me.  For three weeks, I'd walked right by it trying to ignore it.  This week I could no longer.  Something in me was curious to see if I could still do one.  As Chrystal was dancing next to me last night (try to talk to me and break my intense concentration needed to not trip over my own feet), I quickly asked, "Would you help me do one pull up after class?"  She loved that idea and the minute we got over there she changed it to "Ok, give me 5 of them."

No, no, no.  I wanted 1.

Well, I was able to do one, but quickly discovered that I shouldn't have even done that.  It wasn't so much the pulling up that hurt.  Instead it was the hanging down in between.  It was a much bigger stretch than I had yet to feel. 


However, it was good timing as I had a doctor appointment today.  I asked Dr. J's opinion.  He assured me that there was no sign of damage.  Interesting though, he said he didn't really know when I'd be able to do pull ups again.  He hasn't had a lot of people asking to do them before.  I'm taking that as my excuse to never do them again...or at least for the next 6 months until my curiosity gets me again. 

Funny

I've been pretty busy since heading back to work this week.  It went well.  I decided to go back full days instead of trying out half days first.  At about 1:00 each day, I felt overwhelmingly tired.  But I compensated for it in Diet Pepsi and made it through the day.  I have my last physical therapy session this week.  The axillary web syndrome has cleared up.  Now when I stretch upward, I feel just a stretch instead of a pull.  It feels pretty amazing! 

Being back to work has forced me out of my sweat pants.  the transition out of comfy pants hasn't been that bad, however I've had some issues with my top half.  I'm very happy with my reconstruction and I am so thankful that I'm able to have reconstruction that turned out so much better than many women had to endure in the past.  But...it takes some getting used to.  I had to wear a dress and a swim suit for the first time in the past week.  They feel so different and big and awkward to me. I know that they aren't that big and many people have told me that I don't look different at all, but I am still so self conscious about them.  Here are some comics that strike a chord with me lately courtesy of bustygirlcomics.com. 

Renee's Medical Leave 7 Weeks in Review

As my medical leave is coming to a close, I thought I'd put together a year in review sort of a post.  You may have noticed my posts have tapered off as I have less news and I know that once I'm back to work I'll be posting even less.  So here's a recap of what my medical leave has been like.

Even though I spent a lot of time recovering--resting, napping, relaxing, I also tried to accomplish things as well.  I tried to give myself one project each day whether it was cleaning something, sewing, or sorting though things. 

I sewed a pillow case and crib rail teething guards (not that she's still chewing on them, more to cover up the former chewing damage) all using left over fabrics that I already had in the basement.

I organized my recipe collection.  All those great ideas I've cut out or collected over the years are finally categorized and ready to use.

I made a lot of trips to Menards.  I would drop the kids off in the mornings between 7:00-8:00ish and I'd be ready to start my day, but most stores don't open that early.  Thankfully, Menards was right on the route and already open.  I finally got around to buying just a bunch of little things that we've been meaning to pick up for awhile like a new night light, shower curtain rod, or spackle. 

I read and watched the Help.  I loved the book!  The movie was great, but the book was still better.

I read Extremely Loud and Incredibly Close.  I can't believe how long it took me to finish this one.  After finishing several books really quickly I figured I'd fly through this one, but the style that it's written in really was strange to me and I had to take it slow. I haven't gotten around to watching this movie yet, but we will soon. 

I read a couple other nonfiction books that were like the What to Expect When Expecting for mastectomy patients. 

I had a mediocre performance in this years NCAA pool.  I actually had the time to think about read up a little before my choices.  That's definitely not my usual style.  I'm pretty happy with my mediocre performance.  It's better than last place, which I've been in for several years in a row.

I lost a lot of Words with Friends games.  I'd like to think it was the pain meds taking my spelling ability down a notch, but I haven't been on those since like week 3. 

I sold a lot of items on our trading post, craigslist, and ebay.  I passed a lot of baby items onto new homes.  I had no idea there would be a market out there for my old bras, but people bid on them.  One of them went for $12. 

I became a regular at the library.  Unfortunately, my book to DVD check out ratio was way out of proportion.  It's kind of embarrassing.  I thought I'd do a lot more reading.  But movies were a mindless activity I could do every afternoon sometimes falling asleep during them.  You just can't do that while reading.  At least I don't like to...some students in my class do however. 

I watched all of the Twilight Saga movies.  I'm finally caught up with the rest of the world.  I held off as long as I could and didn't really understand the whole vampire phenomenon.  I considered reading them, but then I realized that I only had a few weeks left and the first movie was airing on FX one afternoon, so I figured perfect timing.  While I don't think that the plot was the most amazing thing ever (the scenes with werewolves talking made me think of Babe the pig or Air Bud), I was pleasantly surprised with it overall.  There were some nice romantic notions, like the way the vampire characters have this stance next to their loved ones, the valor of protecting Bella, and the idea of being able to fly off anywhere around the world at a moments notice without any concern for money.  To my surprise, watching Edward Cullen was an enjoyable way to spend four of my days off..   

I watched probably every romantic comedy that Ryan Reynolds has been in.  It seemed like every movie I watched had some sort of connecting or repeating actor from the previous one.  I started with Bridewars which had Kate Hudson, then she was also in Something Borrowed which had Ginnifer Goodwin who was also in Five, then Definitely Maybe with Ryan Reynolds and the Proposal which also had Sandra Bullock who was then in the Blindside.  Then there's Emma Stone, who seems to be like Elizabeth Banks quietly starring in every movie lately.  Of all these movies, my absolute favorite was Crazy, Stupid, Love.  It was hilarious and had shirtless Ryan Gosling.  Speaking of him, I watched every Nicolas Sparks novel that has been turned into a movie. 

I cleaned the house a lot.  I had to stay away from vacuuming for a good amount of time--you'd be surprised by how much chest muscle is used.  By five weeks I could vacuum again.  At seven weeks, I was shampooing the carpet.  I discovered some new products that made cleaning much easier.  I love my shark steamer.  It's small and met my weight restriction.  Steaming the dirt made me not have to put the muscle into scrubbing things away.  My sinks and shower have never been this clean.  I can't believe that I just now discovered Swiffer Dusters. I also discovered a new mop called the Rubbermaid Reveal Spray Mop that is similar to a Swiffer Wet Jet, but you can put your own cleaning formula and has a reusable mopping pad. I cleaned every closet, got rid of a ton of stuff, and reorganized the kids toys.  I cleaned our house well enough for it to be put on the market any day now.  If only Mitch would stop changing his mind daily on whether we should list it or not after we make our final few repairs. 

I scheduled a lot of appointments.  I had the ones that I already knew I'd need like breast surgeon, plastic surgeon, and physical therapist.  But I also thought I'd take advantage of the time and get other doctor and dentist appointments out of the way for the year for myself and the girls.  It's amazing the different vibe places have when you are there leisurely at 9:00 am rather than trying to cram an appointment in during the crazy time between 3:00 and 5:00. I convinced Mitch to get tested for allergies. He complains all the time about it and we clearly have our deductible met this year, so go get it done!  It turns out he's allergic to all grasses.  The doctor said it's amazing he hasn't had a reaction to beer over the years. 

This leaves me with one last day of time on my own tomorrow.  I made sure the house is completely clean and all the laundry and ironing is done so that I have no tasks to complete tomorrow.  I have a 10:30 doctor appointment and 2:30 PT.   Somewhere in between I'd like to get a pedicure and maybe meet Mitch out for lunch.  It's going to be a great day. 

Step 2

Even though I had my mastectomy and reconstruction done in a one step procedure, it still was really just the first step of a bigger process to reduce my cancer risks.  Unfortunately having a BRCA mutation increases your risk for not just breast cancer, but also ovarian, colo-rectal, melanoma, prostate, stomach, and uterine cancers.  Now that my breast cancer risks have been reduced/almost eliminated, my next biggest risk is ovarian cancer,  The general population has a lifetime risk of about 1 in 70 (1.5%) of developing ovarian cancers.  Those with BRCA1 mutations have about a 40% lifetime risk.

Honestly, I wasn't really concerned by this risk at first. We don't have the huge family history of ovarian cancer. But the more I learned and researched about reducing my breast cancer risk, the more I saw the connection between breast and ovarian cancers.  All of the recommendations that I've received from multiple doctors state not just a recommendation to remove my breast tissue, but also to remove my ovaries.

This is more than I'm willing to do right now.  I put all the fight that I have into this mastectomy and reconstruction and want some time to just be normal for awhile.  I understand why doctors recommend it.  If breast cancer is fueled by estrogen, removing the ovaries will almost completely eliminate the estrogen in you and further decrease breast cancer risk while eliminating ovarian cancer risks at the same time.  However this surgery has major  physical and psychological side effects.  This is not something I'm ready for yet.  Maybe down the road...but definitely not now.  I even said to Mitch the other day that I've worked so hard to not get breast cancer, I don't want to deal with ovarian cancer too.  If  I were to get it without any family history, then maybe that's just how things are supposed to be.  He quickly pointed out that this doesn't match with my opinions on breast cancer and challenge me on it.  I love him for this.  I can't stick my head in the stand and ignore my other risks.  I did this so that I can be here for my children and grandchildren; I cannot be done yet.

So Friday morning, I had my first consultation with a gynecological oncologist to find out what I can do in the mean time to monitor and reduces my risks for ovarian cancer.  I knew a little bit going into it, but it felt great to hear his recommendations.  He wanted to send me down for some tests right away that day.  All of the recommendations say to start these tests at 30.  I'm thrilled that he didn't say because I'm 29 right now, we can wait 6 months.  This showed me that's he about action, not sitting around waiting for cancer to grow.  He is going to order a blood test called CA125 every 3 months, rather than the 6 month recommendation.  He outlined exactly what we're looking for with the blood test, what would happen if there begins to be an unhealthy pattern (additional ultrasound of ovaries), and what our nonsurgical option are (OVA1 test if any mass were to be found).

The number 1 thing I can do to reduce my risks is surprisingly using oral contraceptives, something I had been avoiding for years because of the increase in breast cancer risk associated with hormonal birth control. It was interesting to find out that not all birth control options provide reduced risk for ovarian cancers.  Now that I do not have breast tissue, this sounds fine by me providing they don't make me crazy or have any additional strange side effects.

When we feel 100% sure that our family is complete, having a tubal ligation would provide additional benefits. He'd like to take it one step further and completely remove my fallopian tubes as new studies show that most ovarian cancers are originating in fallopian tubes, then spread to ovaries.  This is an exciting option to me.  It would allow me to retain my ovaries, so that I don't have to go through chemical menopause at a young age. Then when I get closer to natural menopause age, I can remove my ovaries to give me the extra protection from both breast and ovarian cancer as these risks increase with age.

I left that appointment feeling great.  I think I just found the Dr. Colette of Gynecology!        

5 weeks

Sorry for not posting lately.  I know that it's had several of you concerned.  :)  I've been making an attempt to not be online as much lately.  Someone important in my life complains that I'm constantly on my computer.  I've been making an attempt at improving this and now nightly while I used to be online and he'd be watching TV (usually some series that no one else would want to watch anyway) we've been watching movies together.  We've watched: The Blindside, Easy A, The Proposal, The Change-Up just in a one week span and that's not even considering my afternoon rest time romantic comedies that I watch by myself.  I recently discovered the DVD collection at our local library, and I've been flying through movies in addition to all the great ones friends have given to us or let us borrow. 

I am at 5 weeks post op now.  I'm doing very well!  I am doing physical therapy 2 times per week for an hour and then have a homework assignment that takes about 30 minutes twice a day on days when I don't have therapy.  My axillary web has really stretched out well and I don't anticipate problem with it for much longer.  At this point, I only feel a tugging when I lift my left arm out to the side and all the way up to the top (think like jumping jack or snow angel).  When I hit the point of about 120 degrees to 180 (which I can't quite reach yet anyway without my physical therapist pushing it there in a stretch), I feel a lot of pulling and tightness.  But it's getting better with each session.  I can now put my arms behind my head lying on the ground (think like start of a situp) and my elbows can touch the floor without a problem.  I can now cuddle close with the girls and do not feel any pain.  I even lifted Adrienne up a few time this week piggy back.  I am physically almost back to normal other than still getting tired really fast.  And when I do get tired, I am like completely wiped out tired (the kids noise won't even wake me up out of a nap). 

I am getting a little bored with being home.  This week I decided to start sewing again.  I made Adrienne a pillow case and fixed something that's needed repairs for over a year.  I organized a whole bunch of closets (don't worry, I was following my restrictions and just left boxes or piles for Mitch to move later). I'm crazy for saying this, but I'm almost ready to go back.  I really do miss my students and the friends at school.  I go back to work in two weeks.  I planned on taking 1/2 days for the first week back, but this week I'm going to see if I can stay a bit more active.  If I'm ok, then I'll go back full time right away.  So...you may not see another post from me for awhile because I'm going to try to relax on my last week off (this week is technically my last, then next week happens to be our spring break.)

What I've accomplished today...

I made it out of the house with two kids by 7:00 and made it to Physical Therapy for 7:30.

I blow dried my hair with a round brush and arms behind my head.

I replied to a whole bunch of emails, wasted about 3 hours on the couch, and ate half a box of Girl Scout cookies.

It's been a great day.  I'm off to another appointment now hoping to hear that my incision are looking good.

Run

I ran for the first time yesterday!  Despite the cording, I got the ok to try "light jogging."  They recommended loading on the sports bras, not because they're going anywhere but just to make me feel more secure.  I did a slow mile and a half, walking a bit before and after.  It felt good!  I felt like I could have kept going a while longer, but knew that I needed to keep it light, so I stopped anyway.  However, I will admit that run was ALL that I did the entire day.  I was on the couch the rest of the day.  I wasn't sore or anything, just tired.

So now, who wants to do the Cellcom Marathon Relay with me???

Cord

It's official.  I have Axillary Web Syndrome. I have a cord in my left armpit.  I can feel it and see it now if I hold my arm up a certain way.  It feels very strange like tiny ropes being pulled in my arm and armpit.  It is the result of some of the vessels being damaged during the sentinel node biopsy. (Sentinel Node Biopsy was the biggest set back of surgery day for which I received the bill of $588 for yesterday--I wonder if they took anything off for waiting over 2 hours for a five minute injection.)  The lymphatic system has been disrupted and now it's trying to restructure itself to find a way for the lymph to drain.  Here's a picture of someone much skinnier than me.  Luckily I have some meat on my bones and mine doesn't stick out like this.   

There is shockingly little information available about it.  Prior to surgery, I heard all about the lymphedema risk, but never this. The few pieces of information that I have found out there all contradicts each other.  One study says that it occurs to 6% of patients, another 40%, another claims that as many as 72% of patients develop it but it's just not well documented because most women think that it's just pain associated with mastectomy and don't notice because they never see the cords pop out.  Some studies say that leads to an increased risk of lymphedema, others disagree.  All studies agree on treatment involving stretching, which I have already started and am doing several times a day. The cord and developing web will go back to normal or pop in weeks or months, but there's no way of knowing how long it will be. However, some women are still bothered by in years following their mastectomy.

As much of a pain as this is, my motto is . . . it's better than cancer.

Day 23

It's been 23 days since surgery.  That's just over 3 weeks.  I'm almost back to normal with the exception of not lifting things and getting tired easily.  I had another Physical Therapy session this morning and tried Zumba Gold yesterday.  It's so strange how some simple moves can feel so different now.  The very first song during the warm up of Zumba had an arm movement that I've done hundreds of times previously and never thought would be a problem, but I felt it!  I had to take it so slow (slower than the moves already are during Gold!) and make sure that it was good stretching pain not hurting pain.  I had fun the rest of the time, once I realized what I could and couldn't do

Before surgery I worked really hard building up my core muscles so that I could handle movement post surgery with ease.  My torture for this was holding plank position for 2 minutes at a time.  It was tough, but I could do it.  Now, instead of holding plank, my two minutes of torture is simply lying on my back with my hands behind my head letting gravity pull my elbows down to the ground.  This sound so simple, but is so challenging for me right now.  Most of my pain right now is in my armpit area rather than directly on my chest.  There just a crazy tightness there.  My physical therapist said that this is typical because that's the center of where everything goes to (nerves, vessels, etc.)  and that my chest is numb therefore, I'm not feeling the muscle stretching pain there. 

She talked to me today about Axillary Web Syndrome or Lymphatic Cording. Because of the pain I describe during movement sounds like that, we're going to just make sure we keep things moving and stretching so that it doesn't turn into it.  I don't really want guitar like strings poking out from me, so I'll be working hard on those exercises.

 I even felt so good today, that I went to Younkers to do a little shopping with their Good Will sale.  Of course, the one day I choose to do something fun for myself during recovery, I see a student's mother there shopping as well.  Oh well, she was very understanding and I got myself some good deals.

Physical Therapy

First day of physical therapy was tough.  She had me stretching and pushing it a lot further than I even would have done for myself.  That's the point though.  I already feel less tightness across my chest and shoulders.  Funny moment of the morning was when I realized that my bra had burst open again at some point during the exercises and I never noticed.  I have no feeling there and I was concentrating on the movements.  I didn't notice until I stood up to leave and my shirt wasn't lying right.  Oops!  If you ever see me having a wardrobe malfunction, please tell me because I probably don't notice. 

Tonight we have a dinner waiting for us made by Chef Kelly (PCMC's private chef and hospitality specialist).  It looks delicious.  I'm having a hard time waiting for dinner and not tearing into it (especially the cake) right now.

Beautiful weather

This weather has been beautiful! I'm really enjoying going on walks and sitting outside watching the girls playing in the backyard.  However, I must admit that this warm spring isn't really compatible with my post mastectomy wardrobe plans.  I really would like a few more weeks to hang out in over sized sweatshirts.  I have movement back enough to get into regular shirts, so I am no longer limited to button up shirts, zip front hoodies, or step into tanks--getting them off is sometimes tricky though still.  It's just that my skin is having some sort of a reaction still to something used during surgery and is peeling like crazy.  I don't really want to show off my arms yet in this condition.  Now onto my other interesting problem...my underarms.  Apparently placing something under your pectoral muscles reshapes your underarms as well as your breasts.  I now have to figure out how to shave these newly shaped underarms which has not been very successful yet.  I'm hoping it just takes time.  If not, I'll be having laser hair removal soon.  I wonder if my Plastic Surgeon would give me a deal on it?  So if you happen to see me out, please ignore the flaking skin and possible hair.  Thanks!

Day 16

These last few days have been interesting.  I left the plastic surgeon's office Monday with some directions for scar treatments that were pretty interesting.  I'm going to go into some details that everyone might not be into, so feel free to stop reading here.  The directions were to cover my incisions with Vaseline, let it sit for a few hours or overnight, then take a wet wash cloth and try to rub away the glue that is covering it.  I didn't really understand exactly what this meant at the time, but the directions sounded easy enough so I didn't ask more questions. 

Monday night I slathered on vaseline and Tuesday morning I started the second step.  I wet a wash cloth and started rubbing away at the incision.  It was a very strange experience.  Here I was pushing on and rubbing with something warm and wet on the side of my breast, but I cannot feel a thing. It was even crazier when the glue actually started to come off.  I had no idea how my incisions were actually closed, but they didn't look pretty.  They were smaller and thinner than I had expected, just a thin line with some brownish reddish chunks of skin in a few areas and an all over greyish tint that I thought meant I was headed toward having necrotic tissue (dead tissue that would just fall off eventually).  They weren't awful, but weren't pretty. Well after a bit of work, this stuff started just peeling off revealing this tiny pink scar.  All that grossness was just the glue with dried blood in it.  I was just amazed! I was so excited! I now understand why so many women post pictures of their healing--they just want to share this amazement with someone else. I had a hard time not taking a picture immediately and sending it to Mitch's phone, but thankfully rethought that one before I actually did it. 

It took a few days and quite a bit of Vaseline and rubbing, but eventually it all came off.  I was all set to begin the next step in scar care involving a silicone product called prosil that cost $21 for .15 oz. (smaller than a chapstick tube).  However, there is a bit of bleeding from the incision still.  Not a ton, not in all areas.  I called the doctor about it today and asked if I what I should do.  The nurse explained that I should not use the prosil scar treatment until it's completely closed up and that I need to be careful and watch for signs of infection.  Too bad, I waited to call until after I had already put the prosil on.  Oops.

All that work left me a bit sore--more than I have been feeling lately and feeling more run down than yesterday.  I hope I'm just imagining this because I'm a worrier and it's not an infection coming on. 

2 weeks post op

I am now two weeks post op and feeling great.  I feel 100% sure that I made the right decision and am already happy with the results.  I'm off pain meds--just need an occasional ibuprofen or Tylenol.  I'm still napping each afternoon, or at least nearly sleeping while watching something each afternoon.  My body is regenerating itself into the alloderm that was used to create my "pocket" so I am expected to get tired and I plan on allowing myself to rest whenever I feel the entire time I am off. 

I read an article the other day that Giuliana Rancic went back to work 2 weeks post op.  Please don't compare me to her.  Even though I am feeling very good, the thought of going back to work right now is out of the question.  I really would like those articles that gush about how quickly she bounced back to tell us more about her work day. I'm doubtful that it's a full day; I would probably last about 2 hours, plus prep time to get myself ready and to work.  Giuliana has a team of people working for her to put her together each day or she gets to show up to work wearing a hooded sweatshirt and sunglasses and they put her together when she arrives eliminating that whole wake up at 5:30 to get myself and the kids ready before school routine that I have to handle.  She can probably take care of some of these post op things during her work day.  Guiliana you are not going to make me feel guilty for taking more time off.  Aside from the huge amount of healing I've been busy doing, here's what else I've already been able to accomplish in 2 weeks:

• Read The Help, watched The Help, and 1/2 way through a second book already
• Cleared the DVR of 1/2 of the season of Private Practice and an entire season of Grey's Anatomy
• One puzzle
• 15 minute walks every day for the last 3 days including one outside w/ the dog not pulling thanks to her Gentle Leader collar
• Enrolled our cars in "Progressive Snapshot" to see if we can save on our car insurance

I'm free!

I'm free!  I'm drain free!  I move my arms, no tugs or pulls.  I can put on and take off clothes now without feeling like I'm stuck on a leash.  It feels amazing! 

Now my output in drain #4 still wasn't good. It still was hovering right at 30cc or more each day, never lower despite my best attempts at being lazy.  But my scheme worked anyway. I showered this morning, drains dangling off a lanyard around my neck.  I did my hair and put on make up. I figured maybe he'll think: "She looks so good, back to normal, we're going to take these out anyway."  I'm not sure if that's it or if was because when the nurse asked if I was ok having more pictures taken today, responding with "only if you take the drains out."  Either way they are gone.  I can throw out the gross measuring containers and move on.

I'm moving on to

•  be able to drive myself again
• a weight restriction from 6.5 lbs (gallon of milk) to 10 lbs. (bag of flour or large potatoes)
• physical therapy to increase my range of motion and slowly work my way back up to exercising regularly to avoid lymphedema (My risk is really low because I had 1 lymph node on each side removed, but staying active is the best way to prevent it). 
• Doctor appointments every 2 weeks now instead of 1 week. 
• Scar conditioning routines morning and night instead of drain stripping, measuring, and emptying. 

If...

If I come home from this appointment with drains still attached to me, I do not know what I am going to do.  I remember reading one person's perspective.  They told their doctor that "if these drains don't come out soon, someone is going to be strangled with the tubing."  I don't know I'll go that far, but who knows what I'd be capable of if I'm pushed to 3 weeks with these things. 

Day 11

Good appointments this week.  Everyone keeps telling me they look great and I'm doing really well.  Both Dr. Colette and Dr. J. called additional people into the room to show them the results because they were very proud.  Dr. Colette worded it well, "We usually get the disasters, so I want her to see something good."  

She also mentioned that she's going to present me at Tumor Board.  We went into surgery with that uncertainty of what would be in there based on my last MRI and almost drastically changes the plans.  Now that they know the exact pathology, they can use this to show others what fibroadenomas look like on MRI.  I'm happy that others will be able to learn from this.  Before doing surgery, I really wanted to participate in some clinical trials. I felt like I needed to do my part to help the research, but none of the ones I looked into ever worked out for me.  So now I still ended up doing my part for research without even trying.  

My dark coloring in drain #4 is not a concern.  It was likely a clot and most clots break up 7-10 days after surgery.  This started happening on day 9.  Everything makes perfect sense. The smell is not there, someone was imagining things.  But the amount of output still bothers me. I've created my new rules because I need to do something to get drain #4 output drastically lower by Monday.  I do not want it still in me past Monday.  I need to be draining less than 30cc in a 24 hour period.  I'm draining over 20cc morning and night.  My body has some work to do.  I'm on recovery day 11 and here are my rules (that I should have been applying all along, but haven't been.):

If it is higher than shoulder height, I don't need it.

If it's on the floor, squatting only to pick it up.  If that doesn't work, it can stay there until someone else picks it up. 

If it's more than one of any item (even if I think it's still below my weight restrictions), carry them only one at a time.  

I am limited to reading, puzzling, writing, and watching.  

We'll see how the day goes with these new rules!

 

On a better note...

I'm not a person who often posts pictures of the delicious foods I eat, even though Mitch is a great cook.  But this I had to share.  It was the best tasting sandwich I had in a long time.  It made me feel a lot better today. Thank you, ladies!

Negative Nelly

I will admit it, I have been quite a Negative Nelly lately stuck here home by myself.  Here's my list of things that I recently decided that I dislike.

I dislike:

Drain #4: I dislike all drains in general, but this one in particular is the worst.  The fluid suddenly turned very dark and according to Mitch has a bit of a smell to it.  He assured me that it was more than my normal stink, thank you very much.  So now we have something to see the doctor about today. 

Sleeping:  Under normal circumstances, there is nothing that I like better than sleeping or napping away an afternoon.  I like to curl up on my side with the blankets right up by my chin.  I am forced though to sleep only on my back.  As soon as I lie down, I have intense pain at the bottom of one breast.  Eventually this goes away and I fall asleep.  However, I wake up a bit later and have kicked the comforter down to the end of the bed and my cozy blankets have gone south with it leaving me shivering.  I don't have the strength to pull the blankets back up because they are weighed down by the comforter.  My options are to wake Mitch up asking him to pull them for me or scoot myself down further to wear the blankets would reach.  Mitch is working so hard taking care of everything, I don't want to wake him up.  So I attempt the scooting down.  But then the pillows need to be moved.  It's not as simple as reaching back behind your head and pulling them a bit.  I wish I could do that, but I'm lucky to be able to reach out of bed to touch something on the nightstand much less pick it up.  So that leave me with doing a full sit up to get out of bed, stand beside it, move the pillows, climb back in bed to where the blankets now reach me, and try to get back to sleep before the intense pain at the bottom of one breast gets the best of me again.

Pain Meds: I don't like them.  They make me sick if I don't eat a full meal with them.  I don't ever know if what I'm feeling warrants taking pain meds, or if I'm just being a baby.  The pain has changed from general all over ache to intermittent sharp stabby pains.

Muscle Spasms:  I don't know if what I'm feeling is really a muscle spams, but it's the general pain that is to be associated with a mastectomy. There are times where everything in my chest feels so tight.  It's rock hard and like everything beneath is being squeezed.  I haven't yet figured out a pattern of what brings this on or what helps it go away (other than meds).  I found that if I read with pillows propping up my arms, it's less likely to happen.  I feel like when it happens at night, it's not worth getting up and getting meds.

Wednesdays at Noon: We live very close to the tornado siren.  I need to remember that before I decide to nap right before noon on a Wednesday.

Opening Cabinet Doors: Who knew that little magnet closure could be so strong--stronger than me right now?

Daytime Television: I've seen every single episode of A Baby Story that they air these days, The Real Housewives of where ever is featured each day is pure ridiculousness, and my HGTV/DIY network favorites just aren't cutting it.  I'm moving onto those movies great friends have sent me this week. 

My purse:  I love my JuJuBe durse (diaper bag/purse) so much, but it has been banned from me for awhile.  Even with most of the contents removed (honestly I don't need to carry around diapers/wipes/a change of clothes for kids), it's still just around my weight limit.  I wish I had planned ahead for this because my bin of substitute purses is just beyond reach in an underbed storage container.  I now rely on others to carry it for me or not bringing it at all.  Sorry--can't pay for lunch, didn't bring my purse!Let's see how Dad likes carrying it for me when he takes me to my appointment today :)

I'll stop here to keep from getting anymore negative.  I have another doctor appointment this morning.  Hopefully, I come home from this appointment with less things on this list rather than more and a better attitude. 

Here are two good things:

1.  Aila told me this morning, "Mom, your pajamas are beautiful!" and she combed my hair for me after a shower yesterday.

2.  Adrienne sat in my lap yesterday as I read her some books.  As long as she climbs up there and she doesn't lean back, it's not breaking the weight restrictions, right? 

boob voyage party

A few weeks ago before surgery, we held a "Boob Voyage" party to say goodbye to my old ones and raise some money for Bright Pink and FORCE.  Here are some pictures from the fantastic day! 

The cupcakes.  1 out of 8 cupcakes had a lump hidden in them.

The donation bin and information center

These two are very excited for zumba!

Me looking nervous

Two of my biggest supporters!

There's such a fun atmosphere at Energy Dance Studio already, we added a bit more decoration.

Catching up with a friend I haven't seen in forever!

The proceeds!

2 out, 2 to go

My appointment went well.  2 drains were pulled.  2 are still left in.  The best part is that I get to shower tomorrow!  It's amazing how much better I feel with just those 2drains gone.  They hide better under shirts, can now just be pinned without pulling everything down, and even aren't that bad just hanging on a lanyard in front of me. 

I'm not sure if you are familiar with what these things are. So here's a quick lesson in case you see them hanging off of me or someone else in the future.  These grenade shaped devices with tubes are stitched in at the end of surgery to collect blood and lymphatic fluid.  By collecting it in the drain it keeps it from staying within your own body at the surgical site potentially causing infections.  The drains are stitch to you on the outside then have to be attached to you at all times during recovery.  They are emptied several times a day and the tubing is stripped daily to make sure there aren't any clogs.  You have to measure and record the amount drained each day because once it is below a certain amount, they can be removed.  This picture is a very pretty version.  Mine are always hanging off of me with a varying shades of red-yellow fluid. 

Now I did say, the 2 drains were pulled.  Literally pulled from my body.  They snipped the stitches and yanked.  There were two nurses working with us today and they considered doing them both at the same time.  Dr. J said that I didn't come here for torture and advised them to do one at a time.  It was crazy to see how long the drain that was inside me actually was.  No wonder they were so painful poking around inside me all week. 

He said everything looked great and my healing was progressing even better than he expected.  It was so good to have all my questions answered.  I am still kind of an emotional mess, but at least I know that regardless of how bruised, swollen, and disgusting they look to me everything is going well in the professionals opinion.

2:00

2:00 cannot come soon enough.  I have my first post op appointment.  I'm hoping that at least 2 of these drains can come out.  I have so many questions for him.  I've spent the last few days googling mastectomy images because I want to know if this bruising is normal or if that sort of a look to my drain site is a problem.  I just want answer from a professional.  And I want to nap, but I'm too excited to.