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.