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.

The Truth

So, the truth one week post-op is, I hate my boobs. I'm soooo trying to keep an open mind about this, but I'm bummed out. They aren't the shapes I had hoped for. They are smaller than I expected. And the right side - the side that did NOT have cancer - has a weird dent in it parallel to my incision. At my pre-op appointment the nurse warned me to remember that they are "sisters" not "twins," and I get that, I really do. But man, this sucks.  I know things have to settle and swelling has to subside (which will make things SMALLER?!) And I know my surgeon has told me I might want a revision to address symmetry down the road (yeah, ANOTHER surgery), but today I just want you to know how I'm feeling about it, in case you feel the same way too. This whole process sucks. There's no way around it. And I am sad.

I've been stressed out about weight loss too, with a new passion around that. I'm trying to find enough willpower to overcome my stress-eating ways. After being told that I can't for so long, I am truly ready to start moving and finding activity and exercise that I enjoy. Stuff that won't feel like punishment or work. I've got to refine my diet and improve my nutrition. 

I'm questioning what caused this in my body. What am I doing that made my body welcome these icky cells, and can I change it? Do I have the willpower to change it?

Ok. Rant over. Again, I count my lucky stars every single day because my worries are nothing compared with many who have fought and are fighting cancer. I'm lucky. These worries are nothing compared to some, and I'm truly blessed. But I just wanted you to know that it's OK to feel crummy about your outcome. Not everyone will look as perfect as some of the reconstructed breast images you'll see online. Only time will tell if I can get used to the new way that I look.

Bed time! Four days post op

It has been 4 days since my implant surgery, and I am finally feeling better. My weekend was rough. For most of it, I had a low-grade fever, a low appetite and low energy. I slept a lot. But my pain level has also been very low (yay!!!). That is both good and bad, to me. This pain is lower than my tissue expander discomfort, but it's partly because I am numb. I know I need to take it easy to heal, but because I am not feeling pain, I could over-do it without realizing it. I do have some minor muscle soreness. But it is nothing compared to everything else. I'm on my third day without my prescription pain meds. And all my systems seem to be back to normal post surgery (hallelujah!). I'm attempting to sleep in my bed tonight surrounded by pillows. Since my mastectomy on June 1, I think I have tried 3 full nights in the bed. I would wake up multiple times - every time - so, I would default back to the couch the next night. My only real fear is turning over in my sleep and hurting myself. I have to remember that I have stitches and healing incisions. So, that's why I have the pillows. In the couch recliner it is almost impossible for me to turn over. I'm giving the bed another try. My back feels sooo much better without the expanders. I don't miss those things at all. Wish me luck!

Selecting Treatment for DCIS

Every cancer diagnosis is unique and dependent on many individual factors. It is full of individual characteristics and variables. Once you begin your journey, it's unlikely that your diagnosis will be identical to another person's.

I'm not a medical professional. I've never been through this before, and everything I share is based on my own personal experiences guided by a medical team that I trust. Just like the diagnosis is unique, the course of treatment is also unique. I encourage you to research everything recommended to you by your medical team. It will be based on your complete medical picture. What's right for me, might not be right for you. I can't tell you what's right for you, but I will share with you some of the information that I used to make my decision and some of the facts that I researched. I feel extremely lucky and blessed that with my diagnosis there were choices. I'm saddened that many cancer patients aren't offered any choices.

My diagnosis was Ductal Carcinoma In Situ (DCIS). That is considered to be Stage 0 breast cancer, and is non-invasive. Before I had my diagnosis, I chose to do a surgical biopsy of the tumor - or lumpectomy - where the entire tumor was removed for biopsy. When my diagnosis came back as DCIS, I had a choice of following up with a second surgery to remove more tissue that would ensure all of the cancerous tissue was removed followed by radiation treatments, or to do a mastectomy that would not require radiation or any further treatments. I chose to have skin-sparing bilateral mastectomy with immediate reconstruction that would be completed in phases. My surgeon also recommended a sentinel lymph node biopsy to try to ensure that no cancer cells had spread to my lymph nodes. I chose to do that as well.

Why did I choose mastectomy? It's a major surgery - my first in fact. Because I chose mastectomy, my treatment did not include radiation or drug therapy. (Chemotherapy is not usually associated with this diagnosis, so none of that either.) I believe that I have reduced my chances of recurrence as much as I possibly could have. There are certainly no guarantees, but I sleep better knowing that I don't have to go through this testing and these surgeries to follow up on a lump in my other breast years down the road. When I met with a radiation oncologist he told me that either way I went, I couldn't make a wrong decision. But he also told me that if I had another lump in the future, that my medical team would likely recommend mastectomy at that point. That would mean going through every single step that I've been through all over again. Finding the lump. Worrying. Mammogram. Ultrasound. Biopsy. Waiting for results. MRI. And then - surgery again. Likely a mastectomy.

I'm a worrier. If I had chosen lumpectomy and still had breasts, I would be constantly scared that I'd find another lump. I'd be counting down the days and hours until my next mammogram, and I would be living in fear. I'd lose sleep over it. Some women know that they will have body image concerns, but I honestly am not one of them. I don't care at all about losing my breasts and having scars. My fiancé also doesn't care. I don't feel like less of a woman at all. I don't plan to have any additional children in the future or breastfeed again. And I don't have a need for functioning breasts. I'm totally comfortable with the idea of having reconstructed breasts.

The language of cancer is foreign to someone who hasn't been exposed to the terminology before. I had never heard of DCIS before my diagnosis. I knew about stages of cancer, and that women that I have known have gone through the journey before me, but I didn't have to memorize the terminology. Here's a rundown on my diagnosis, if you're uncertain about the terminology and would like to learn a bit more.

Ductal Carcinoma In Situ (DCIS) is a noninvasive condition in which abnormal cells are found in the lining of a breast duct. The abnormal cells have not spread outside the duct to other tissues in the breast. In some cases, DCIS may become invasive cancer and spread to other tissues. At this time, there is no way to know which lesions could become invasive.

DCIS is classified as Stage 0. The breast cancer stage is based on the results of testing that is done on the tumor and lymph nodes removed during surgery and other tests.

Most patients with breast cancer have surgery to remove the cancer from the breast. Some of the lymph nodes under the arm are usually taken out and reviewed to see if they contain cancer cells. A sentinel lymph node biopsy is the removal during surgery of the sentinel lymph node - the first lymph node to receive lymphatic drainage from a tumor. It is the first lymph node the cancer is likely to spread to from the tumor. A radioactive substance and/or blue dye is injected near the tumor. The substance flows through the lymph ducts to the lymph nodes. The first lymph node to receive the substance or dye is removed. A pathologist views the tissue under a microscope to look for cancer cells. If cancer cells are not found, it may not be necessary to remove more lymph nodes.

The standard recommended courses of treatment for DCIS may include:

• Breast-conserving surgery (like lumpectomy, which removes the tumor and a small amount of normal tissue around it) and radiation therapy with or without tamoxifen
• Total mastectomy (surgery to remove the whole breast that has cancer; some of the lymph nodes under the arm may be removed for biopsy at the same time as the breast surgery or after) with our without tamoxifen. In a bilateral mastectomy, both breasts are removed. If a patient chooses mastectomy, breast reconstruction (surgery to rebuild a breast's shape after a mastectomy) may be chosen. Breast reconstruction may be done at the time of the mastectomy or at a future time. The reconstructed breast may be made with the patient's own (non-breast) tissue or by using implants filled with silicone gel or saline.
• Breast-conserving surgery without radiation

I researched and considered alternative treatments as part of my plan as well. Each patient is entitled to be their own advocate and ultimately be in charge of every step that you take. I'm learning about, and taking steps to improve my nutrition every single day. I also believe that increased activity will benefit me. I believe that everyone can benefit from that no matter what.

I used Navigating Cancer and Blood Disorders, a web site founded and developed by accomplished professionals from the healthcare and technology worlds, as my primary source for describing DCIS and treatment options in this blog. This web site was provided to me by my oncologist, and is one that I trust. I encourage you to use sources provided to you by your medical team as well. There are tons of sites out there, but please spend most of your time at the ones your medical team refers you to.

Expanders Out - Implants In!!!

Tonight I'm home in absolute awe over how EASY today's surgery was. I keep thinking I'll start to feel worse at any minute, because I don't feel that bad at all right now! (Thanks, pain meds!) The hardest part - legitimately - was all the WAITING I had to do before my procedure began. 

I had to make sure that I didn't eat or drink anything after midnight the night before, so I got a snack around 11 p.m. That was a smart move since things were slower than planned. This morning I showered with anti-bacterial soap, and shaved my legs in case I can't for several days. I got my driving pillow for the seatbelt, my pain medicine, changed into my glasses, and chose comfy, loose clothes (and a button-up shirt.) My procedure was scheduled for 1:15 p.m. We arrived at 11:30 and got checked in with the receptionist. In 15 minutes or so I was called back to get in my fancy gown and weird grippy socks to get prepped for surgery. That part was quick. And then I waited. And waited. And waited. 

I was so happy to see a nurse that has been in all THREE of my surgery pre-ops/recoveries. She even remembered me. It made me feel comfortable instantly. As she was reading my paperwork, she asked me if she was in my other surgery. And later she remembered that she was in both of my other surgeries. (I thought so too, but was afraid it was a delusional moment post surgery.) The nurses did all the standard questions and typing into the computer - when did you last eat, last take meds, did you leave the country, blah, blah, blah. And they took my temp and blood pressure. For some reason my temperature was 99.8 - I was really nervous that would be a deal breaker, and I had no clue why I had a low-grade fever. I wasn't feeling sick - just really nervous and anxious. There was no other mention of it, but I was really afraid they'd tell me I had to postpone.

At around 1:05 p.m. the nurse told me that the surgery before mine hadn't ended yet, and that it would be a few more minutes. 

Around 1:45 p.m. my surgeon came by to talk with me. He told me it would be a breeze, and that he'd place the implant size that looked the best. 

About 10 minutes later I met with the anesthesiologist. He put me at ease too. 

Usually after the doctors talked with me at my other surgeries, things started to progress quickly, and it wasn't long before the OR nurse arrived and introduced herself. Before she materialized, I went to the restroom really quickly, and then sometime after 2, it was time to go back. I handed over my glasses (which meant that I could only see blurs and outlines from that point on), and I said "see ya later" to my fiancé.

In the operating room they had pop music playing. I told myself I'd remember the song, but of course, I don't. The nurse leveled out my cot so that I could get up on the operating table. I did. I remember them untying the gown around the back of my neck as I positioned myself in the right spot on the table. They placed a few sticker sensor things on me, and then I got the mask for the deep breaths. I think I took 3, or maybe 4, breaths. I heard the anesthesiologist tell me to pick something good to dream about, and the next thing I knew I was waking up in recovery! It was a little over an hour later, in reality.

My eyes felt super heavy when I first woke up. I struggled to keep them open. I didn't feel any pain - or at least nothing compared to the pain waking up after my mastectomy - just some soreness. And my arms felt a bit sore too, for some reason. I had an oxygen mask on, and I hoped that breathing in deeply would help me feel normal faster. I hoped that I wouldn't say anything stupid and incoherent to the nurses while I was coming to. I reminded myself to keep my mouth shut. :) The nurses let me rest for several more minutes, and said they'd go get my fiancé to come back with me. They also let him pull the car around to patient pick up, so I knew I'd be moving out soon! When he arrived back there, my eyes were still feeling heavy, but it eventually got better. The nurses got me some ice water to sip on. And offered me some Sprite. I had a yucky taste in my mouth, and they said the Sprite would help. The biggest win of all - NO QUEASINESS this time! At 4 p.m. they gave me some crackers, and I took one of my pain pills. I went to the restroom again, got dressed, and it was time to go home!

When I got home I ate some crackers and chicken noodle soup since I wasn't able to eat beyond midnight the night before surgery. I started my antibiotics. I've felt great ever since! I can move my arms like normal! I didn't need help to get to the restroom. I could get in and out of the car on my own. It is AMAZING how awesome I feel! Now, I know that tomorrow I'll probably feel sore and achy, but I can totally handle this, so far. :) I'm on my recliner/couch with my pillows around me. I've got ice packs to use intermittently to help with pain and swelling reduction. And I feel great! I did have some bleeding on one side - I was told that would be normal, and to change the gauze as needed. We did that right before bed. It's a slow staining, but I'll keep an eye on it. I can see my incisions through the steri-strips. I'm wearing an elastic binder that closes with Velcro in the front. That is holding the gauze against my incisions. I can see that the same mastectomy scars were used, and that they are not cut the entire length. The ends in the middle of my chest aren't cut. I'll take some photos tomorrow. And the best part - THERE ARE NO SURGICAL DRAINS!!!!!!!! I really hate those darn things.

All in all, I am so pleased. The surgeon told my fiancé that everything went great. I have one side that expanded differently, and that might cause some symmetry problems, but we won't know for sure for a few months. I'm really pleased with the results. My skin feels way more normal when I press on it. When I put my hand over my heart I don't have to cup my hand around a bulky tissue expander. And, from what I can see so far, the placement is way closer to a natural breast placement. Thank. Goodness.

We'll see what tomorrow - and the weekend ahead - brings! Thank you so much for your well wishes and prayers. I was so nervous all day today, and I thank you for thinking of me.

Ugh, I hate IV's, but today's nurse told me to take a deep breath when she inserted it, and it hardly hurt at all! The stinging when one of my medicines started was way worse.

My oncology facility gave me this super cool reusable (it has a snap) lymphedema alert bracelet. The nurses thought it was awesome. Not sure they've seen it before. It's hot pink, and it's way cooler than the paper one that I usually get.