Perspective

I have so many things I want to tell you. I would even be willing to post pictures just to give you a bit of perspective, but that might be taking things a bit too far.

So, I will tell you this:

If you are having a really bad day, and you feel like the world is ganging up on you, I want you to look down and take a peek inside your shirt. See down there? See your breasts? (and this includes men!) Do you see your nipples? Are they still attached? If you nipples are still firmly attached, and they are not threatening to FALL OFF, then tell yourself, "Things could always be worse. I still have nipples."

And "worse" is a relative term. I am still walking, talking and breathing. Breasts are not what keep me alive, but they are part of my fight at the moment so that's where I am. I'm about ready to stop fighting for my nipples in my quest for pain free days.

And that, my friends, is your bit of breast cancer awareness for today. 

Awareness month: Breast cancer

It is October 2014. It is Down syndrome awareness month and it is also Breast Cancer Awareness month. Where do I start????

Lets start with Breast cancer this year, shall we? We all know that breast cancer exists! Every month is breast cancer awareness month. Ever day when I look in the mirror, or take a shower, or glance down, I am reminded how breast cancer has affected not only me, but my entire family. There is no escaping it. But, that doesn't mean I buy into pink.  Some yes, some no. Yes, the pink ribbon has become the symbol for breast cancer, but before you get involved in activities and events promoted by various breast cancer organizations, check out their stats. What percentage of their money raised is actually given to the support of people with breast cancer, or to research for a cure for breast cancer?  How much of the money raised goes into overhead? Just because they have a big name does not make them a good place to put your money. Pink has become a great marketing tool for many organizations and businesses. People think if it's pink, they must be doing good things with that money. Not necessarily true! Do your research, ok? We don't need awareness events, we need research. We don't need "feel good" events, we need research.

Did you know that the survival rate of breast cancer has NOT CHANGED in 20 years???? If the research was being done, this statistic would no longer be true.

 Did you know there are 14 different types of breast cancer?

Did you know that "early detection" of breast cancer is a bit deceiving? Most breast cancers have been there months -or in my case years - before they are actually diagnosed.

Did you know that 76% of women who develop breast cancer have absolutely NO risk factors? All women are at risk!

11% of women diagnosed with breast cancer said pain was symptom. I am one of them. In fact, it was my first symptom. It is pain that lead me to find my lump.

There are approximately 232,670 new cases of breast cancer in women are diagnosed in the US every year, and 2,360 cases of breast cancer in men. Approximately 40,000 women and 430 men in the US die from breast cancer every year. 

While mammograms are helpful in diagnosing breast cancer, the most important thing you can do is know your breasts! Know how they feel and how they look so you are aware of changes when and if they occur. 

Take that, cancer!

Its done! Chemo is done!!

I had my last treatment on July 17th. Unfortunately the fatigue is cumulative with each round, so even though I did not have that evil Neulasta shot - so no bone pain - I am still dealing with some fatigue on day 14. (normally its gone by day 10) I had one day that I was feeling pretty good, and even posted something on Facebook about being back. Apparently it was caffeine talking. A couple days later my counts dropped further and I got sick. Today my neutrophils are at 400. I've been on a broad spectrum oran antibiotic for a week and will continue for a few more days. Without that I would be in the hospital on IV antibiotics.

Anyway, even though I'm still dealing with some side effects, chemo is done, and that is a huge thing! Clearly worth celebrating!

I have spent the last four months researching all of my option related to mastectomy and reconstruction while taking into consideration the risks associated with each decision.  I was, and still am, happy with my own boobs. I just don't want them to kill me. I have a 1/4 chance of getting cancer again if I leave them alone. I don't want cancer again.

Today I met with my plastic surgeon, Dr. L. I have used her in the past and knew she did breast reconstruction. She did her plastics training at Mayo clinic, and she is awesome! I have to say, my boobs are really the only part of me that I truly am happy with. I am NOT happy to be faced with the decision of whether or not to do a mastectomy.

First Dr. L.  looked at the size and shape of my breasts and the current scars from my lumpectomy and lymph node biopsies. Most women want to have a shape similar to their natural breasts. Based on where my scars are she thinks I am a good candidate for nipple sparing surgery. This is a big deal, because it means the end result is much closer to a natural breast. I really want to be comfortable looking at my own body, much less my husband. It is impossible to know until the doctors are in surgery and can take a good look at the nipple and surrounding tissue, but for now it looks like a good option.

Because there isn't cancerous tissue involved I can have reconstruction at the same time as mastectomy. That means as soon as the breast tissue is removed the doctor would place a tissue expander under the muscle of the chest wall. This would be left in for several months and slowly expanded through a port similar to the port in my chest. Once they're the right size (similar to my current natural size) I would have another out-patient surgery to exchange the expanders for implants.

Next we talked about the type of implants she recommends for me and why. I have been researching implants for months now. Who knew there were so many? I thought I had decided I would prefer a cohesive gel implant, but once I got to ask some questions and see them for myself I don't think so. I was able to feel all the different types of implants and see how they would look in position.  Dr. L. also explained that at the top of the chest there is often a cavity after mastectomy. She uses fat grafting to fill in that area.

Then we discussed timing of surgery. If I need to have radiation it is better to have the mastectomy done before radiation. After radiation nipple sparing is not an option. After radiation the skin will loose all its elasticity. The loss of elasticity means I would need to have a dorsal flap procedure done to have enough skin to create a breast. There is also another type of flap procedure, using abdominal tissue, but I am not a candidate for that.

Needless to say, I would prefer not to have the flap procedure done. More scaring. More risk of problems. Having radiation after mastectomy comes with its on set of problems an is certainly an issue to keep in mind, and I still need to find out if I can go without radiation if I'm having a mastectomy and have already had chemo.

I left feeling like I was, for once, doing something that was proactive instead of reactive. Chemo is reactive. Radiation is reactive. Mastectomy to prevent the recurrence of breast cancer in one breast, or a new diagnosis in the other is a proactive approach. Next week I will meet with my oncologist as well as my other surgeon (He and Dr. L would work together to do my mastectomy and reconstruction.)

There is  no way to 100% eliminate all risk of breast cancer recurrence or to eliminate the risk of developing cancer in the other breast, but mastectomy is as close to zero as a woman can get. 

I'm not brave

Over the last couple of months many people have said to me, "You're so brave."

No. No I am not brave. What about being given a diagnosis of cancer makes me brave? I have no choice in whether or not I choose to fight this disease. That doesn't make me brave. It makes me a patient.

Someone who is brave steps into a situation no matter  how scary it is, like running into a burning building to save a life. Am I determined and strong? Yes, I think I am, about a lot of things. But I am taking this disease by the horns not because I like the thrill, but to keep it from impaling me! It is absolutely possible to have a positive attitude about things while simultaneously being scared to death!

I am not a survivor yet either. A survivor is someone who has come through a difficult battle and lived to tell about it. Right now I am a warrior. I am a fighter. I am in active battle with a horrible disease that kills people. When I ring that symbolic bell in honor of my last chemo treatment, when I can say there is no evidence of disease inside me, THEN I become a survivor.

My tshirt for today

Do it

If you are a woman, please please please watch this video. (it is not for kids)



Now do it. Every day. Touch yourself. Know your breasts so when there is a change you will recognize it. Don't skip your mammograms. Do you know if I had skipped this mammogram, my journey would have been very different? It could have killed me.

Since my diagnosis several friends have told me they've had mammos done, one that came back with a mass and is waiting her biopsy results.  Two other friends had genetic testing done and one found she carries the BRCA1 gene. Some friends have decided to put it off even longer. This was the exact purpose of sharing my journey. So that others can help themselves. I have given a lot of details because that is what I wanted to find when I was freaking out digging for info. I have so many friends who have said, "I haven't had a mammogram in two years, but I don't have any risk factors, so I'm ok." No! No you are NOT! I have ZERO risk factors. Cancer doesn't discriminate. It doesn't care how old you are, how many kids you have, or if you're a nobel prize winner. Cancer doesn't care.