Sunday, July 29, 2012

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, "" 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.

Friday, July 27, 2012

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. 

Tuesday, July 24, 2012

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." 

Saturday, July 14, 2012

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. ... ay_health/

(Scroll down to video.. 2nd one)