Friday, August 28, 2015

Two Doctor Visits and a Twist in the Path

I saw two different doctors yesterday.  The first was just a follow-up with my cardiologist to see how my blood pressure was doing.  It was 136/82 which is amazing for me (I have been known to be as high as 200/110).  So he's not messing with my meds, and I don't have to see him for a year unless someone wants an echo down as part of my cancer treatment.  Then I'll go through him since I'm about due for one anyways, though he's fine for putting that off until after things settle down with the cancer.

My second appointment was with the new surgeon, Dr. Ahrendt, who also happens to be the head of the breast cancer surgery group.  I really liked her, and she was able to clear up a few things for us, and address some of our frustrations.

She was actually surprised that I hadn't seen any of the other doctors, and that my first appointment wasn't a group appointment.  Before I left, I not only had the appointment with the oncologist that I had made, but two other appointments were scheduled for me.

She also cleared up some confusion with our understanding of the pathology report.  While my first surgeon went over it briefly with us on the phone, it wasn't until my post-op appointment that it was gone over in any detail. The problem was that appointment wasn't with a doctor, but rather a Physicians Assistant, and things weren't presented correctly.  Jim and I were very honest with my Dr. Ahrendt about our concerns with how things have gone so far, and she seemed genuinely concerned that we had faced these frustrations.

So that part of the appointment went well.  Unfortunately, we did learn a bit more about why they were recommending a second surgery.  Where the PA had led us to believe that it was because UPMC wasn't following the new guidelines for margins, Dr. Ahrendt explained why those new guidelines didn't necessarily apply to my case.  We also discussed the fact that they had already taken a large amount of tissue in the first surgery, which makes a re-excision a poor option.  So we have decided to proceed with a mastectomy with immediate reconstruction.  We meet with the plastic surgeon next week and will be able to start to figure out exactly what reconstruction I will have.

At this point, I am very happy with the team of doctors that is being "assembled" for my treatment, and I am coming to terms with the fact that I have to have the more drastic surgery.

The other thing that we learned yesterday, was that even though the auxiliary lymph nodes were clear, the fact that I had an intra-mammary node with cancer isn't a good thing.  I have a feeling that between that and the fact that my HER 2 is equivocal,  I will need chemo.  We'll find out when we meet with the oncologist on Wednesday whether or not that will be before or after surgery.

With the mastectomy, it is unclear whether or not I'll still need radiation.  I will see the radiologist on the 23rd of September.

So lots going on, lots to digest, and lots still unknown.

Tuesday, August 25, 2015

Taking Control

Just like a parent of a child with special needs has to be an advocate for them, we need to be an advocate for our health and our health-care.  I'm not afraid to question a doctor or the necessity of a procedure.  Maybe it's because my husband and I work in medical research and deal with MDs day in and day out, but I long ago realized that they aren't perfect and don't have all of the answers.  I never assume that just because a doctor says something that it is right, and I will speak up if necessary, and we do our research.

Up until now I have been content to follow the way of doing things at Magee in treating my breast cancer.  Not any more.  The problem that I have is that the cancer treatment is done almost piecemeal.  I have had this diagnosis for two months and have yet to see an oncologist because you don't see them until all of your surgery is done.  That has never sat well with me, and I know, from talking with others, that it's not how places like Cleveland Clinic do things.  At any rate, I finally have had enough, especially since I'm looking at the possibility of having a second surgery.  Yesterday I made the appointment with the oncologist on my own. Granted, I confused the scheduler and it will be interesting to see what his reaction is, but I need to take charge of my treatment.  There are too many outstanding questions concerning other aspects of my health that I need his input on, and I am tired of waiting.

Also, while I am scheduled to meet with the new surgeon on Thursday morning, a second surgery is by no means a definite.  We will listen to what she has to say, but we may also seek a second opinion from John Hopkins.

Sunday, August 16, 2015

About Me

I guess that I should do an about me page here.  I’m just not too sure how to describe me.  First and foremost I am a Christian and a wife.  Those are the two things that define me the most, and I view them in that order.  But it doesn’t stop there.  I’m a daughter, a sister, an Aunt (to the most adorable nephew ever), a granddaughter, a friend (though I would like to become better at that).  I am slightly obsessed with fashion blogs, but I also read a lot of foodie blogs as well.  While I steer clear of most “Christian Ladies blogs” there are a few out there that I enjoy. 

I love to watch action/spy type shows and movies, but I also watch Food Network, HGTV and Disney Jr. And I really love the older cartoons.  I listen to bluegrass and country and old hymns and CCM. And I also love operettas like Le Miz or Phantom of the Opera.

I love to cook and bake (though since dieting I don’t do much of it) and I do counted cross-stitch, knitting and crocheting.  And I would love to try my hand at quilting.

I also love to wander eclectic neighborhoods looking for neat little stores and food places.  I also like adding little eclectic pieces to my outfits, usually in the form of an accessory.

So I guess that’s a little about me.  Slightly quirky and still defining.

Monday, August 10, 2015

Post-Op and MRI

This morning was my post-op appointment followed by my MRI this afternoon.  The post-op went well.  I am healing nicely and have been released from restrictions.  That means that I can finally get back to exercising.  Now I still need to take it a little easy and not do anything that is going to pull on the under arm incision, but things like crunches and some weight lifting will be fine.   I will probably hold off on any yoga or aerobics for another week until I get more of a range of motion back.

We did learn that the tumor was much larger than we originally thought.  We also learned that I had both invasive cancer (which we knew) as well as cancer that is in situ, which basically means contained in the duct.  However, at this time there is no indication that the cancer has spread from the breast and the sentinel lymph nodes were clear.

We still do not know whether or not I am HER2 positive or negative, it is still coming up as equivocal.   More than likely the medical oncologist will need to send the tumor out for further testing to determine.  Here’s a link to an article on HER2.  If I am HER2 positive, I will more than likely need to do a round of chemo at the start of treatment for it.

The MRI actually wasn’t as bad as I thought it was going to be, and I could have probably managed it without taking anything ahead of time.  For a breast MRI, you actually lie face down with your arms above your head.  Your head rests in a headrest that reminds me of what they have at spas for massages.  So really, as long as you don’t think about being in the tube, even if you open your eyes you can’t really tell.  It was very noisy and the occasional movement made me a bit motion sick.  All in all though, it wasn’t bad at all and took less than a half an hour.

At this point, we are still in a holding pattern.  There are still a lot of unknowns, and it will take a few days to get the results of the MRI in.  I also need to switch surgeons, as my doctor is now a few days past her due date.   I have two picked out, and am comfortable with either of them.  They are both very experienced.

Saturday, August 1, 2015

Not the News We Wanted . . .

. . . or "The Start of My Cancer Journey"

Around the beginning of June (or maybe the end of May) I found a lump in my breast.  We decided to give it a week or two, to make sure that it didn't change, and when it didn't I went to the doctor.  I had an ultrasound done, and the radiologist recommend, based on what she was seeing, that I have a mammogram and a biopsy done.  So I had both done that day.  That was June 19th and I new once she started the ultrasound that it was cancer.

This past Tuesday I had a lumpectomy and sentinel node removal.  We got the results back yesterday evening.  Unfortunately, our plans for healing from surgery and then six weeks of radiation have been slightly thwarted.  The margins weren't clear, so I will have to have additional surgery.  I have opted to have an MRI done first, just to help keep there from being any new surprises.

I think that I'm taking the news pretty well.  At least right now I am.  Talk to me in five minutes and that might be a different story.  I'm scared, I'm sad, I'm slightly angry, but I'm holding on to the fact that God is good.  And I will thank Him, and praise Him, even in the hard things.  Not perfectly, and yes, I ask why.

I said in my last post that the Lord's timing is perfect and shortly before I was diagnosed I discovered a wonderful song called The King of Love My Shepherd Is.  It has become one of my rocks that I cling to when the scariness of this disease threatens to over take me.  It's an old hymn, but one that I have only recently discovered.