Happy

Today I married my best friend. I picked a dress to show off my new cleavage post bilateral mastectomy with reconstruction. The best part - no bra required! My implants are shaped silicones, and I didn't love them at first. No matter where you are on this roller-coaster of a journey, trust me - I believe it can be a blessing in disguise. And, it gets better. One day you'll get to a place where normal returns and you see the experience in your rear-view mirror.

How do I tell my children?

How do you break scary news to your child? The answer is as unique as the individual who's struggling with the answer. I'm not an expert, but I am a mom, and I take my responsibility to protect my child extremely seriously.

Today I want to talk to you about how I chose to break the news of my medical treatment to my son. I'll also walk you through some of the things I think you should consider as you decide what's right for you and your family. Again - not from a place of educational expertise - but from my own experience.

First off, YOU decide what is right for your family. You and you alone. You'll hear this many times as you're going through treatment for DCIS, but almost everything about this is a highly personal decision dependent upon many unique factors. You get to decide what's right here too.

Here is what was right for me.

I told my 12-year-old son about my DCIS and treatment right before I went to the hospital for an overnight stay with my mastectomy. I made it through the initial scare, the mammogram, the doctor appointments, the lumpectomy surgery and the wait for the surgery date to roll around, before he even knew what was happening. I felt it was just too much for him to bear, for those first few months. I simply didn't want him to worry.

When I went in for the lumpectomy we were able to drop him off at school and go straight to the outpatient surgery center for my surgery. I told him I was going to the doctor. When he got home from school that day, I was at home sitting in the recliner - as I usually am - and he had no idea that I had surgery that day. I told him I didn't go to work that day. No big deal at all.

I dealt with some super heavy days before my son even knew what was going on. For me, it was important not to disrupt his routine or his feelings until I had the facts. I was worrying non-stop, and I didn't want to put that burden on my child. School was in session at the time, and I couldn't see any good reason to tell him right away. So, I waited.

I knew I'd have to have help from family members when I was at the hospital for my mastectomy, and so I knew it was the right time to talk with him about it. The conversation went extremely well. He was in his room and I talked with him. I told him that I had seen my doctor and had some tests done, and that my doctor had suggested surgery because some of my results showed that I needed it. He followed me, so far.

I asked him if he knew what cancer is, and he said he did. He had learned that it's when cells in our bodies are defective and grow into something bad. I asked him if he knew what the pink ribbons stood for related to cancer, and he did - breast cancer. I also asked him if he had ever had any friends whose moms had breast cancer before. Again, he did. We talked about them. I told him that is what I would be having surgery for, and that my doctors were going to take care of me. We talked a little about the surgery and how I'd be spending one night in the hospital to make sure I was OK after the surgery. He was totally fine with the plan of staying with a family member. He did ask if he could go to the surgery too instead of school, and I told him that I was only allowed to bring one adult to drive me home, and that I didn't want him to miss school. He was OK with it after we talked it through. I could tell he was worried about me, but the words I used weren't too scary or overwhelming. And I truly felt confident that my decisions and my doctors' recommendations were the right steps for me. I also told him that I'd be staying home from work for a few weeks after my surgery to recover. Some of my recovery was during the summer and he was glad that I would be home.

My son came to visit me in the hospital the next day after my surgery. He brought me a teddy bear, a balloon and red roses. I was so happy when he walked in with those that day. I am sure I looked a bit scary with a hospital gown, drain tubes, pain pumps and IV. I didn't show him the bandages or anything like that, but I did show him the binder I was wearing. He was curious about it all, but he didn't seem to be freaked out. I put on my best face and attitude while he was there. And I told him I should be able to come home the next day. Luckily, I was able to.

He was very helpful throughout my recovery. Also quite protective and wanted to know when I'd be seeing the doctors. I had two follow-up surgeries after my mastectomy, and I told him about those. I tried to use what I was going through as educational opportunities. Doctors help us. I counted my needle sticks throughout - I think I was at 17 when it came time for his next round of immunizations - and I told him what I did when I'd get an IV or injection of saline. It was good to relate my experience to his.

I'm really pleased with the way we discussed things at my house. I know that this isn't a one-size-fits-all approach, but I hope my experience can help guide you as you figure out what is right for you. :)

It Gets Better

Today is an awesome day for me. I've had several crappy, God awful ones, but today rocks. Today I turn 37. I'm so very grateful. And thankful. My 36th year was filled with so many ups and downs. It was kinda awful at times. But today is different. Today marks a brand new beginning to a fresh new year - one where I'll marry my best friend (in six months). One where I get to live life more fully and to its maximum potential. 37 is gonna be grand. I can already tell.

Today I've heard from my family, friends, coworkers and acquaintances with wishes for a great day and year ahead, and I can honestly say that my heart is full. The blessing of a scary, awful medical experience is that you feel so much more completely whole in moments where you are so fully blessed. You don't take things for granted as easily. Life is truly a gift and you feel blessed to be alive.

If I could tell you one thing as you get ready to go through your DCIS journey, it's this: it gets better. You WILL feel better. If you are in pain, it's gonna pass. If you are uncomfortable because you have to sleep on your back, you WILL get to feel comfy in your own bed again. If you're scared about upcoming surgeries or procedures or test results - you'll get past it, and you'll surround yourself with a rockstar medical team who will guide you through it all. The crappy day you're having right now - the feeling that you're not "yourself" - the days when you are sad or angry or scared or uncertain. All of that DOES pass, and you'll feel better. One day you will.

There also could be speed bumps and twists and turns in the road. Sometimes it gets worse before it gets better. What if you get test results that change the diagnosis? What if the journey of fighting cancer must be repeated later down the road? What if things actually get worse? That's certainly a possibility too - for all of us. There are no guarantees, and I'm not naive enough to think that everything always works out in the end. Life is full of uncertainties and ups and downs. It tests your faith and your convictions. It always seems like you've either just gone through something, or you're in the middle of something, OR you're just about to go through something. That's life - no guarantees. Sometimes the news sucks. But I'd like you to consider that you are strong and that you will find a way to get through it, no matter what it is. And - God willing - once you're through it, you'll feel like a brand new person.

I'm at that place today where I can finally say that I am happy. I didn't know if or when I would get there. I've had many crummy, awful days. Days where I didn't think I could motivate anyone with my words here because I couldn't even motivate myself. It sucks.

My wish for you as I blow out my birthday candles today is that you'll soon get past this icky, awful time too, and that it will get better for you fast. I'm here to say, it gets better.

Surgery #3 Pre-Op

Since my tissue expander fills are over, I was hoping I would be able to get through this whole week without any needles, but no such luck. Today was my pre-op appointment at the hospital, and it required blood to be drawn. I'm all set for surgery #3 next week to get rid of my tissue expanders and place my implants. I can't wait!

What is a Mammogram like?

I never spent much time worrying about what a mammogram would be like. I just accepted it as a normal screening that I'd do when my insurance company started to cover it. (Under my plan it's covered at age 40 for women who aren't at high risk.) After my diagnosis, I mentioned to my surgeon that I had started advocating for early mammograms, and he told me that sometimes people who personally know someone who has had a cancer diagnosis become MORE HESITANT to be screened. I hadn't really considered that everyone would look at this differently. It's always challenging to see things through someone else's perspective. So if you haven't had a mammogram screening before, I wanted to tell you what it's like. I'm not a medical professional - just someone who has had to learn about it quickly, as a patient.

I'm absolutely NOT afraid of doctors. I view them as vital. If something is going wrong with me, I want to know as soon as possible so that I can start to fix it. I do annual exams with my gynecologist. I'm not at all afraid of it. I always chalk that up to having a child - once you've been through that experience, modesty goes out the door, and nothing seems awkward or painful at all about an annual exam. I had planned to be just as diligent about mammograms too. I've followed along several breast cancer journeys, and I knew the risks.

Check Yourself Monthly
I always did self exams of my breasts in the shower. They always felt "lumpy" to me, so I wasn't sure I would know what I was looking for if I found something iffy. My doctor always does an exam of my breasts annually as well, and I'd always feel the same way that she does - circular motions, kneading dough motions, etc. I just wasn't sure what I was looking for - until, that is, I found it. In the shower, I noticed what I can only describe as a grape under my skin. I don't know the exact date that I found it, but I did. And, I couldn't stop thinking about it. I knew that I should have it checked out. How did I know?

1. It was new. It had developed and wasn't there before.

2. It was different. It was unlike any other area or bump or inconsistency I had ever felt before. Everything else within my breasts felt similar. If I felt a bumpy area, it was very similar to all the other bumpy areas.

3. It didn't go away. Breasts can change with our normal female cycles throughout the month. Sometimes breasts are tender and sore, and other times everything feels just fine. This place was always there; after I noticed it - it never went away.

Now, there are many things to look for with breast changes. Sometimes it's an indentation in the breast or an inversion. It could feel harder, feel like a lump, look like a dimple, etc. I found one illustration that shows 12 different signs of breast cancer that you should be looking for. But to best summarize it: you're looking for something that is DIFFERENT than before. Become familiar with how your breasts feel, and look for anything that is a change. Talk to your doctor if you have any questions, or if you notice anything. Don't be afraid. The sooner you find it, the better your outcome could be.

I've also learned that sometimes these things can't be detected by touch. Sometimes they are there, they are small, and they are bad news. That's why I can't imagine NOT wanting to be screened. If something nasty and deadly is lurking, I want to eradicate it. I hope you won't be afraid either.

After I found the lump and talked to my doctor, she set up a mammogram for me. The appointment was excrutiatingly FAR away from the date that I scheduled it. So I kept calling back to see if there were any cancellations. I finally got lucky, and got one - and got in 5 days sooner. That was important to me. By the time my original appointment rolled around, I already had the cancerous growth out of my body. Be your own advocate. Don't hesitate. Don't be afraid or timid.

I walked into my mammogram knowing that I had this lump that needed to be checked out, so I had a diagnostic mammogram. The technician took many images of the one spot in questions, from different angles, because we knew the spot was there. I wasn't intimidated at all. I wanted those images, and I wanted to deal with whatever it was. Was it uncomfortable? Yes. A little. Was it weird to have my breasts tightly pressed between plastic for photos of them? Yes. It was. But I simply did not care, because I had to know what I was dealing with. The technician told me to let her know if she was pressing too tightly on my breasts. I let her clamp it down as much as she wanted to, because I wanted the best possible images. I wouldn't describe it as painful, just really uncomfortable. But it was only until she could get the image, and then it was released.

I wore a shirt-like gown in place of my shirt. I removed it for the images. The nurse placed stickers on my nipples and on any place on my skin that was raised, so that it would be noted on the images. She also put stickers near the questionable area, since we knew about it. Then she walked me through each step. She told me where to stand and where to put my hands. She positioned my body into the machine and then told me to let her know if it was too much pressure. It wasn't for me. She took many images, and in 15 minutes or so, it was over. She told me she'd take the images to the radiologist to review and they'd let me know if I needed to do anything else.

So I waited in my gown-like shirt.

They did ultrasound images next. A new technician came to get me and we did that. It was very much like the procedure when you are looking for a baby, and I have been through that before, so this was easy. The technician used the cold gel on my breast, and took several images. When she was done, she told me either she, or the radiologist would talk with me about the findings. After several minutes she came back in and told me the radiologist would talk with me, and that I could get my shirt back on. I walked into the area where the radiologist sits to review images on a screen. It was dark back there, and there were several nurses lined up to talk with him. When it was my turn, he showed me the tumor. He explained to me that it wasn't fluid-filled, and that it had a blood supply. Ick! I saw both the mammogram images and the ultrasound ones. He recommended a biopsy as a next step, but the nurse said she'd also set me up for a consult with a surgeon. I wasn't sure why, but I went with it.

I met my surgeon the next day, and he set me up for surgery - a lumpectomy - the very next day after that. He explained to me my options regarding a needle biopsy or a lumpectomy. Getting rid of the thing sounded preferable to me from the very beginning. He told me I wouldn't have to feel it, or explain it to a doctor in every mammogram for the rest of my life if we just got rid of it, and that we wouldn't be messing around if it turned out to be something nasty. I'm very thankful that I listened to my gut on that one. And, I was super grateful that my surgeon's schedule was able to match my sense of urgency. I thought it would take days or weeks to be scheduled. When he said he could do it the next day, I breathed a sigh of relief.

I'm super grateful for my mammogram. It was able to rule out that I wasn't dealing with a cyst, and that it was something more serious that should be tested. I can't imagine my life if I had ignored it. I'm 36. What if I had waited four more years until I turn 40 to have a mammogram? I don't want to think about what could have happened if I had left it there for four more years!

I know that many things related to the medical world are scary and uncomfortable. Needles. Blood. Undressing. It sucks. But you know what sucks more? Not having a choice about your treatment plan because too much time has passed. I can deal with anything you throw at me, if it means that I can be healthy and alive longer.

If you have any questions about my experience, don't hesitate to ask! I'm literally an open book about this. :)

Random Things I Did Not Expect

1) I no longer have nipples, but luckily (ugh) those stupid weird, random nipple hairs are still there,  just living in a slightly new address. Thank goodness for that.

2) Sneezing is extremely painful post op. I  am squelching all sneezes indefinitely. 

3) Hot showers are therapeutic. But not too hot due to all of the numb areas. Didn't expect to hold my hands over my chest to test water temp. 

4) I am numb across my chest, under my arms and around the sides of my back. I noticed it when my fiancé was rubbing my back. Putting on deodorant - and shaving under my arms - feels really weird. 

5) No BRAS! I remember how excited I was when I got on the school bus the first day of the new school year in like 5th grade and told my bus friend that I "had to" start wearing a (training) bra. I didn't expect that I would have that same ecstatic - but opposite - feeling at age 36. I don't have to wear a bra unless I just want to! Yippee!

6) It absolutely IS possible to sleep on my back with lots of pillows. In fact I can now go to sleep quite easily. I didn't expect that I'd ever be able to sleep on my back. I hated it before my surgeries. But, I haven't slept on my side or stomach since May 31.

7) I didn't expect to feel guilty about my diagnosis, but every time that I walk into the oncology center, I feel awful. I feel so guilty that I had options. I didn't have to go through chemotherapy or radiation treatments. I feel guilty sharing my story, because there are so many others who have had it so much worse.

8) I take people up on their offers to help me or bring me things. It's not a sign of weakness at all - it's letting others show you their love and helping you. Don't turn it down.

9) I didn't think that I would second guess everything I've ever done in an effort to try to prevent a recurrence. I didn't think I'd blame myself and start thinking through how I identify and eliminate all of the things that are potentially causing me (and my family) harm.

10) I didn't expect to feel blessed after going through this. I'm so lucky. I have been given a second chance. I saw my life flash before my eyes, and I imagined what it would be like if I couldn't experience all of the things that I want to experience. I am so lucky that I get to adjust my approach and live every moment to the fullest. Tomorrow is never promised, and I'll approach life that way. I didn't expect to feel so blessed.

Surgery #2 is Here

It's bright and early on surgery day. June 1, 2015. I'm here early to allow time for the tracer injection to pinpoint the sentinel node during surgery. Bilateral mastectomy with immediate reconstruction. Sentinel node removal/biopsy. Here we go.

Ultrasound after Mammogram

My first mammogram prompted an ultrasound. I knew it wasn't good when the tech brought me back to speak with the radiologist. When he said that the lump had a blood supply I knew it really wasn't good. Next up: meeting with a surgeon to figure out what's going on for sure.