Wednesday, February 26, 2014

Second Opinions Matter

As my mastectomy date rapidly approaches, I've been becoming increasingly worried about the reconstruction procedure I chose. Although reconstruction doesn't happen until later, I wanted to make sure I was making the right decision. So, this morning when I woke up, I started reading as much as I could from actual women who had the TRAM Flap procedure done before.

The more I read, the more I became convinced that this could be a mistake I would never be able to fix. And with each account of horror story after another, I knew that I would not ever feel comfortable with this surgery. I thought my only other option would be to go the implant route, which would mean that I would have to have a double mastectomy on Monday, so my breasts would match. But then I ran across a new option.

It's called the DIEP Flap. It's the same as the Tram, but leaves my abdominal muscle intact so that I can use it later. It's more surgery time, but shorter recovery time. The downside is that there is only one surgeon in the upstate that is certified to do this surgery, and it's not the one I've been seeing. So, this afternoon's adventure included a meeting with the new plastic surgeon, who's an hour away.

He was great at explaining everything to me. He said that the TRAM Flap surgery is outdated, and the DIEP is the way to go. If I had the TRAM Flap, as I had planned, the surgeon would have had to use both abdominal muscles to create a breast large enough to match the other. If they did that, I would never be able to do a situp again. I would have to roll to my side and use my obliques to sit up. And I would probably not be able to pick up Eliah anymore. And once the surgery has been done, there is no way to reverse or fix it.

The DIEP Flap gets the same results, to include a new breast and tummy tuck, and leaves the abdominal muscles intact. Because it's new and very detailed, there are many that cannot perform the surgery yet. It requires microsurgery to attach the blood vessel and vein to maintain bloodflow to the breast. The recovery time is also reduced from six weeks to about three weeks. And unlike the TRAM, if for some reason the DIEP doesn't work, I can start over with a new mastectomy and look at implants then.

The surgery will be done at another hospital, an hour away, and will require about 3-4 days in the hospital. The surgeon will be doing a Double Flap to create one breast. Typically they take out an elliptical area from the abdomen, and then use half to create the breast. Basically I don't have enough belly fat to use just one side of my abdomen, so he has to use both sides and attach both blood vessels. But the results should look very natural and much like the other breast.

He suggests that I wait six months after radiation to do the surgery, depending on what the radiation does to my skin. Minimum of three months though. I'll see him again after my last radiation to see how it all looks.

Overall, I'm SO glad I went to see him. And he understood my situation, as he has a special needs child as well. I feel relieved and excited about this procedure and know it's the right one. Whew!

Here's an illustration of what the surgery will do.....

Tuesday, February 18, 2014

Suck it, Cancer!!!

Well, I looked my demons in the eyes
Laid bare my chest, said "Do your best, destroy me
You see, I've been to hell and back so many times
I must admit you kind of bore me"
- Ray LaMontagne

After yesterday's valley of sadness, fear, and changing view of the world, I awoke this morning with a renewed sense of inner power.  Today was the day I met with the breast surgeon to discuss my MRI results and schedule my mastectomy.   My appointment wasn't until later this afternoon, and the weather had quickly redeemed itself from last week's snowstorm, so I went downtown to sit by the waterfall in the sunshine for lunch.  

As I sat there, letting the sun shine down on my mostly hairless head, I watched the people walk by.  Some avoided eye contact, some asked me if my head was cold, and at one point, I looked over and a man was taking my picture.  Naturally I did the Anncredible thing and I gave a big smile and struck a pose.  It felt wonderful to be out in nature, soaking in every delicious sound, sight, smell and feeling.  I even took my shoes and socks off and dug my bare feet into the grass.  I wanted that last hour of freedom from whatever truth I was about to hear from the doctor.  

By the time I arrived at my appointment, I noticed that my neck muscles were so tense I could hardly turn my head.  I was about to find out if the cancer was still in my body.  Did I grow new tumors?  Did the chemo fail?  What would happen if it did?  I waited impatiently. 

When the doctor walked in, she said, "You're not going to believe this.  I wanted to do cartwheels down the hall to get here.  The cancer is gone."  She wrapped her arms around me and tears started to stream down my face.  I couldn't believe it.  Then she pulled out the MRI results....

"The multiple enhancing masses previously seen in the right breast are no longer identifiable"  

I had six tumors when I started on this journey in September.  Now, after chemotherapy,  NONE are there.  The doctor said that's called "Complete Pathologic Response", and is the best possible outcome.  She said that only 20% of patients have that kind of response, and it is a great predictor for overall survival.   And based on what the Oncologist told me a couple weeks ago, this puts me at only a 15% chance of recurrence in the next 10 years.  HOLY CRAP!  This is unbelievable news.  

Because of the number of tumors and their size when I started, I still have to do the mastectomy and radiation.  The surgery is scheduled for March 3rd, and I'll be in the hospital a night or two.  And the five weeks of radiation will begin a couple weeks after surgery.  None of it will be easy.  But somehow, it makes it so much easier knowing the chemotherapy worked on me.  

I'm so grateful for this moment.  I'm so grateful for all the prayers, support, and love that continues to envelope and empower me.  Now I feel like I need to celebrate!!  

Monday, February 17, 2014


Most days I have unwavering faith that I will be cured. Up until about a week ago, I felt like I was already better.  I had convinced myself that I was already on the other side of cancer. Hell, I still hadn't even acknowledged to myself that I have cancer.

And then I had a moment of doubt. I was standing in Five Guys Burgers last night with my wig on, having a hot flash while waiting for my order. I looked around the restaurant and I thought to myself, "I look like anyone else in here, but they don't know what I'm going through.  I have cancer. In just a few days,  I'm going to have one of my breasts removed."  And although it seemed like just an insignificant thought, because we all are going through something personal, it seemed so huge to me.  It was like it was the first time it actually hit me that I have cancer.  And my eyes welled at the realization.

Unless you have been here, in this situation, you have no idea what it is like.  It's weird, and difficult, and scary.  Aside from the physical effects, the changed perspective on life is a big adjustment.  Add a major hormonal shift, and that is a recipe for serious life changes.  The things that were once important in my life are not the same now.  Everything has changed, my feelings, my reactions, my priorities, and my expectations of others.

People have often said, "You learn who your true friends are",  and I never understood how things could change that drastically.  Before, I would look at people in this situation and think, "How could people lose friends? What is it that people do to end a friendship?" and I just didn't get it until now.

But it happens. and it's a combination of things that culminate to make my decisions now.  First, it's like the filters you put on a photo to change how you see a picture. I started to view people in my life with this special perspective filter, and it's like I see the truth in people's intentions.

I have found that real friends genuinely want to be there for me, help me, and support me without need for recognition or repayment.  Especially at a time in my life that I am forced to ask for help, that has lifted me in a way that I can never repay (but will try).  There are even little things people do to go out of their way to make sure I know that I'm not forgotten, even when I've been couped up in the house for weeks, with only the occasional doctor's appointment to get me out.  And I have never been more thankful in my life for such blessings.

I am fighting with effects on my body. I'm fighting against cancer. I'm fighting against people that try to use me or control me. I'm fighting for my children.  I'm fighting fear of the treatment not working.  I'm fighting a flood of emotions every hour.  Fighting cancer has put me in fight mode for my very being now. It seems to be an on/off switch.  And it's on...

Some days I look at my responses to situations and don't recognize myself.  I admit that sometimes I overreact, partly because of the hormones, and partly because I no longer have patience for things that affect me negatively.  But it's the fight and fear.  I don't look for problems, but I don't sit by and let things just "happen" to me anymore either.  I will not be a wilting violet.

My decisions now include the phrase "Does this matter in the end?". I don't worry about the petty things, the daily things, the mundane things.  I don't have time to waste on anything but getting myself better, loving my children, my family, and the people in my life that truly care about me and know that I care about them.  The most important thing I try to remind myself, and say to my daughter all the time, is, "Always tell the truth.  Always be kind.  And always do the right thing." In the end, those are the things that matter... and the actions to which you will be held accountable.

I know that people survive every day from cancer.  I know that surviving requires a positive attitude. I'm not naive either; I know things don't always work out the way we hope or plan.  It's not just hard to deal with side effects, tests, and surgery, it's scary as hell to wonder if you have months versus decades, and it all comes down to the next test result.

And as I await the results of my breast MRI from last week, I look back on how my perspective has changed over these past five months since being diagnosed with cancer.  I believe that I've grown so much.  I have more compassion and empathy for those who suffer.  I have more respect for those that have fought and come out stronger.  I have more drive to be a better person and example for my children.  And I have more fight to live than I ever thought I would.  It requires endurance of the body and soul to get up and fight every day, but I won't give up.  And I couldn't do any of it without the love and support of my family and friends. 

Tuesday, February 4, 2014

Unexpected Surgery

I went to the Oncologist today for a normal appointment and labs.  What I didn't expect was surgery!

First, I met with the doctor, and we went over my labs (which look great) and the upcoming surgical plans.  We talked about my treatment with chemotherapy and what it means for the future.  My story is going to be a little different than others, because my treatment is somewhat unprecedented.  Let me explain.

First, I made a choice to do surgery after chemo.  That is not typically the case for most patients. There have not been any studies done to determine which is better, it's just left to the patient or doctor to decide.  What we do know is that chemo has shrunken, if not completely eradicated the cancer, because we can no longer feel any lumps.  That brings me to the next part of the unprecedented treatment.

My doctor started me on Adriamyacin/Cytoxan, which is standard aggressive protocol for breast cancer.  After I started that, a new drug Perjeta, was approved by the FDA in October.  I am the first, and only so far, patient of my doctor that has had both the A/C treatment AND the Perjeta.  My case will be an interesting benchmark for future cases if it works as well as we hope.  The truth will be in the Pathology.

When I have the mastectomy, they will test the tissue for cancer.  If the tissue has NO cancer cells, then the chemo has completely killed the cancer, and likelihood for recurrence drops to 15% over the next ten years.  If there are cancer cells remaining, for example, a larger tumor reducing to a smaller tumor, then the recurrence rate increases to about 40% over the next ten years.  I can't wait to find out!

I will still continue with Herceptin, the hormonal therapy for another 14 rounds, every three weeks.  But that will be nothing in comparison to the chemotherapy.  And after the mastectomy in a couple weeks, they will start the five week radiation.

While I was there, I also mentioned, like I've been saying every time I come in, that my port is causing great pain.  The only difference this time was the fact that it LOOKS bad.   Everyone freaked when they saw it, and the doctor sent me straight to the surgeon to take a look.

This was over the weekend

When I got to the surgeon's office, the nurse looked at my port, ran out of the room and returned within a minute to say they were taking it out TODAY.  They moved me to a procedure room, got me in a gown, and made me sign a consent.

After six shots of numbing juice, and a few jokes from the surgeon, he got to work.  The port was giving him a really hard time, because the muscle had grown around and attached to the base of the port.  He tugged and pulled, and had to give me another shot for pain, and finally got the port out.  Two layers of stitches and some steri-strips, and I was done.

Now I am home resting and waiting on the pain medicine to kick in.  I didn't expect what today brought, but I'm SO glad that stupid port is gone!!!

These photos are from when I first got the port on September 23, 2013....

They have these weird gowns that have holes to put a hose.
The hose blows either cold or hot air inside the gown. 

I wore my wonder woman socks for surgery.
No pics of the spiderman underwear though.

In recovery, Bone scan next

Saturday, February 1, 2014

Surgical Plans

Back from the plastic surgeon with an update.

First, I don't remember the last time someone stared at my boobies for so long.  He pinch, pulled, poked, and drew lines with his fingers.  And I tried not to laugh when I had to stand in front of the plastic surgeon, him having one hand on my stomach, and one hand on my breast, with his head to side, eyes shut and concentrating.... It was like he was trying to crack a safe.

Anyway, down to business. We discussed a number of options and came up with a plan. I will be doing what's called a TRAM flap reconstruction, which means they are going to use skin, fat and muscle from my abdomen to recreate a breast. Unlike a traditional implant, this will feel real, be shaped more like my other, and it won't need to be replaced in 10-15 years. Plus, it will kind of also be like a tummy tuck at the same time. The down side is, I will have a scar from hip to hip, and I won't be able to use my abdominal muscles in a traditional way. They cut the muscles in the abdomen to be used in my breast, in the hopes that we can retain blood flow to that breast. But it will forever be gone and unusable from my abdomen. He said that the surgery will cause a hernia, which they will have to fix during surgery as well.

The whole process will be broken into three surgeries. The first surgery will be the mastectomy, sparing as much skin as possible. Then I will have radiation for five weeks. Then, I will have another surgery about six-twelve weeks later to prepare the muscles in my abdomen. Ten days after that, I will have the TRAM flap surgery. It's a very intensive surgery, and he said it will take 2-3 weeks before I will even be able to stand up straight.

The other option is not any easier or better. If I were to go the implant route, I would have what's called an extender placed behind my chest muscle.  They can't just put an implant under the skin, because there's nothing to support it, and the breast muscle will be removed with mastectomy, so it has to go under the main muscle against the ribs.  The extender is like a plastic sack with a valve. Every month they fill with more and more fluid over the course of six months or so, until my chest muscle is stretched out enough to put a saline implant. The process is very painful, and the end result would not look anything like my other breast. Plus, the implants are only good for 10-15 years, so it would need to be replaced by another surgery down the line.  

The goal is to look, feel, and be as natural as possible.  And my ultimate plan is to tattoo a design all over the breast with something Natalie is going to draw. I'd like it to look something like this.... TMI alert with the photo below.  

This is not me, but an image I took off the internet

It was a lot of information to take in at once. And there are a lot of major choices. But I feel I'm making the best choice for me, and I'm very comfortable with the surgeon.

I met with the breast surgeon this morning, and it started out weird. She walked in and said, "So what are you going to do?", and I said in a slightly confused way, "I guess I'm going to have a Mastectomy". She replied, "I guess you decided since YOU'RE the patient". I said, "I don't know what the heck is going on. What are my options?"  I guess we had some confusion, as she thought I had already met with the Oncologist, Plastic Surgeon and Radiation Oncologist.

It got a little better after that. She explained that she wants to see where we stand after chemo, so I will do an MRI in a couple weeks. They usually don't consider doing surgery for a month or more after chemo because of the risk of infection, so we have a little time. She will do the mastectomy on one side only (by my choice), then do radiation.

As far as reconstruction goes, they say there are better "pretty" results if radiation is done before reconstruction. They suggest reconstruction happens in about a year. There is an option to do both the mastectomy and reconstruction before radiation, but I'll have to discuss that in more detail with the plastic surgeon when I meet him on Thursday. And apparently, there are a number of reconstruction options.