The Beginning of a New Stage in Treatment

Let's see, it's been a couple of weeks since I posted an update as there really hasn't been much to post about.  On September 13th, Jim and I flew out to Phoenix for a much needed vacation.  It was planned about a year ago, but the timing couldn't have been more perfect.  We had a wonderful time.  It was nice and hot, we saw great scenery, had prickly pear ice cream, and just relaxed.  The best part was that there were no doctor appointments and we could almost forget about the cancer for the week.

Last week, I had my colonoscopy to make sure that the issues that I have been having with my colitis weren't anything major.  Thankfully they aren't and it is really seeming like the addition of a new med is helping.  I've only been on it since Saturday and I am seeing major improvement.  Most importantly, the searing pain that I've been in has lessened considerably.

So that brings us to today and the start of chemo.  I'm not feeling stressed about it per se, but my emotions are a bit off, if that makes any sense.  I have to be at the hospital at 8:30 for blood work and then I meet with the Physicians Assistant.  I'm a little concerned about meeting with her.  I've only dealt with PAs twice, and the first time was a really bad experience filled with some not quite accurate information, so I'm still a bit apprehensive about their abilities.  I guess, that just like there are doctors that aren't good, you'll have the same with PAs and I need to quit judging them all by the one.

After the two appointments (and they are scheduled back to back), I start my chemo.  It seems that they do the first chemo very slowly, so I will be there all day.  Thankfully Jim will be with me.  We'll also need to be kept separate from the rest of the patients.  For some reason, people think that bringing animals in to hospitals is a good thing.  Unfortunately, for someone that is majorly allergic to dogs, this can be very dangerous.  But, I'm beginning to think that people don't think logically anymore when it comes to animals.  Okay, rant over about that :)

So that's all that is going on.  I'll post about how chemo went in the next couple of days.  I'm a bit curious as to how my body will react.

Oh and for those of you following Bloom County, I am one of those neanderthals that put two spaces after a period when I type.

Appointments, Appointments, Appointments

Well, I finally have almost all of my pre-chemo appointments made, and one after chemo one as well.

On top of the cancer, I also deal with ulcerative colitis, and I've been having some issues lately with that, so a colonoscopy has been scheduled before my chemo.  If they need to do anything additional it will have to be coordinated for a time when my white blood cell counts are up.  Radiation Oncology will now happen after my first chemo, just by a day, but that's fine as any radiation would be after I'm done with chemo.  All that's left to do is schedule my echo and get blood drawn.  I also need to make an appointment for a wig.  We went last night, but I didn't like the place.  They didn't seem to listen to me, never asked my preference, and completely ignored Jim.

Chemo will start on September 30th.  The first treatment is 7 hours long.  We will need to have plenty of books to read :)

Plastic Surgery and Oncology

It's taken me a bit to write this post.  First, I just needed time to process both doctor appointments - it's one thing to have an idea of something happening - it's another to be told that it would happen.  And second, I needed to have time to sit and put this all into words.

Jim and I met with the plastic surgeon to discuss my options with regards to plastic surgery.  Basically, the two options that I was considering was something called a DIEP Flap surgery and reconstruction using implants.  The DIEP Flap surgery would have used fat from my abdomen, but, for a number of reasons, we decided that it wasn't the best option.  So at this point we're planning on a two stage reconstruction using implants.  I will have my mastectomy and then a tissue expander will be put in.  The way that it was described to me is that it's almost like a saline filled balloon and I'll go every one to two weeks to have more saline injected into it until it is the size that we want.  Then I will have a second surgery to have the permanent implant put in as well as surgery on the remaining breast so that they look the same.

It was a bit odd, I had a somewhat major meltdown after we left the surgeon's office.  I'm not quite sure why, but I was a wreck.  Yet another reason that I was glad that Jim went with me.

However, none of that will happen now until February. In meeting with the oncologist - who is great - it was decided that I needed to be treated for being HER2 positive.  The treatment is started along with a round of chemo.  I will go every three weeks, for 6 infusions, so about 18 weeks.  After that, I will continue going in every three weeks for a year for the HER2 drug.  It's an antibody, not a chemo drug, and it doesn't have the same side effects of chemo.

While I knew that it was a possibility, it did take some time to process, and an evening of, I guess you could call it, grieving.  We have a few things to get squared away first, like seeing my GI doc, before I start the chemo.  We're shooting for me starting the first of October.  While I'm thankful that I only have to do one round of chemo, it's still chemo, with all of the nastiness that comes with it.  And, that has me pretty freaked out.  I'm good most of the time, but if I let my brain dwell on it, I get freaked.

Today Jim and I serve in the cafe for our second service, so we went to church last night.  The final song that we did is called "Whom Shall I Fear (God of Angel Armies)."  Man, did the Lord really use that song to quiet my soul and fill me with peace - and courage.

Processing

We had the appointment with the plastic surgeon on Tuesday and the oncologist on Wednesday.  I'm still trying to process everything.  I'm also allowing myself to take my time and let the emotions run their course instead of trying to push them down.  Thankfully, I not only have a wonderful support system in Jim, my family and my friends, but I have a wonderful Lord who I can cry out to.  He has proven so faithful to give me the peace and the strength that I need through this, and I know that He will continue to do so.

So for today, I am resting in Him, crying out to Him, and bugging Jim at work as much as I need to.

I'll post an update on the treatment plan at a later date, when I'm more up to it.

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.

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.

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.