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. :)

Goodbye, 2015

Goodbye, 2015. Thanks for your delightful twists and turns. It's been nice knowing ya. Thank you. Go away now.

I can't even tell you how happy I am to see 2015 end. There have been so many ups, but just as many downs this year. What. A. Year. It doesn't even feel like December to me. The weather is unseasonably warm here. We've been so busy with life that the holiday has showed up with almost no warning. I couldn't even get stoked about decorating this year, but I finally did. Much, much later than usual. I finished the gift shopping on Dec. 20. While I did pick up a few gifts earlier (as in Black Friday) most of the shopping was done the weekend BEFORE Christmas. My first gift was placed under my tree on Dec. 20 as well. Geez.

So as this year winds down, I'm focused on 2016 and how we will make it a million times better. It's starting to come into focus, and I can just see all of the possibilities. 

I see a March wedding that I have dreamed about for almost 13 years. I see the man of my dreams giving me his last name. I see my new initials. I see a marriage that lasts a lifetime. I see a honeymoon full of smiles. I see a family vacation that our children will speak fondly of for years to come. I see 12-year-olds becoming teenagers. I see my son finally earning his first degree black belt. I see career success and professional fulfillment. I see a sweet little niece that I get to meet. And, I see 365 unwritten days that I get to make the very best of, filled with endless possibilities with of the people I love.

Sometimes life gets so hectic and busy that I forget that I get to decide how the day will go. Heavy stuff happens in everyone's life. There will be ups and downs all of the time, but I get to choose how it affects me. It's so easy to let the downs drag me down, but it's my choice to let it. Or not allow it to create my mood. In 2016 I choose to be happy, positive and present. Hello, 2016. I'm glad you're here.

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!

Surgery #3 is Tomorrow - Silicone Implant Day

Tomorrow - July 30, 2015 - is surgery #3. I'm going in to get my tissue expanders removed and replaced with silicone gel implants. I'm very excited, but I am also trying to keep my expectations at a realistic level. I know that I might not be 100% thrilled with the outcome. They won't be perfect. They definitely won't look like my original breasts. But they'll be breast-shaped. I'll feel more normal. And I'll be on my way to resuming my life. I never lose sight of the fact that I am lucky, and that there are no guarantees - ever. No guarantees with the outcomes of surgery, and no guarantees in life at all.

I'm excited and a bit nervous too. But I'm definitely ready for an improved side view.

At my pre-op appointment with my surgeon, we talked about the placement of the silicone gel implants. I'm going to get shaped implants that are flatter on the top, to help compensate for the way I've expanded. My surgeon told me he thinks I'll be pleased with them and with the final placement, compared to where the tissue expanders sit on my chest.

My last saline fill was July 13, 2015. After each fill, I'd have 3 really sore days, then 3 pain-free days, then I'd head back to the surgeon's office the next day for my next fill. Today is my 13th pain-free day. I'm lucky that I've felt like preparing things and getting things done around the house to prepare for my recovery from surgery. I've spent most of this week trying to do preparations around the house. I've pre-scheduled all of the August household bills to be paid at the appropriate times. I've done all of the laundry. The dishes are done too. I sorted through some of the boxes left over from the move and tossed out some stuff I don't need any longer. I've tried to eliminate some of the clutter that's started to collect around the house. I've done school supply shopping. I even got my hair trimmed and washed today. I've got my anti-bacterial soap to shower with tonight and again in the morning. I don't have any polish on my toes or fingers, as instructed. My pain medication prescription is filled. I think I'm physically ready.

I also took some photos of my tissue expanders so that I can compare them once my swelling is gone. My tissue expanders have ended up being really high on my chest - too high to be natural breasts. They start expanding about an inch below my collar bones. My surgeon has assured me that he's not concerned about correcting the placement in my surgery. I can't wait to see the outcome - with realistic expectations.

Please say a prayer for me, and for my family, as we gear up to go in. I'll keep you updated.

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. :)

Tissue Expander Fill Time

So, yeah. Those needles look HUGE, but keep in mind two things. First, I'm mostly numb. And second, it has 50 cc's of saline in it, and that takes a large syringe. I'll be stuck with these things 5 times. My tissue expanders were placed with 400 cc's of saline at the time of my mastectomy. I'll get 100 cc's at each appointment - hopefully in 5 consecutive weeks - to get up to a total of 900 cc's in each side. At that point, I'll be overfilled, and ready for more comfortable silicone implants.

My Bilateral Mastectomy - Not Sugar Coated!

On Monday, June 1, 2015, I went in to the hospital for my skin-sparing, bilateral mastectomy with immediate reconstruction. I also had a tracer injection a few hours before my surgery that would identify the lymph nodes that would need to be biopsied. The injection was done near my areola, and I had to massage the breast regularly to distribute the fluid before surgery. 

Once I was settled into my pre-op room, there was a lot of waiting. I turned on the tiny tv to try to make time pass faster, but I watched nothing - it was just on. Each of my surgeons (general surgeon who would perform the mastectomy, and plastic surgeon who would place the tissue expanders for my reconstruction) and the anesthesiologist came in to talk with me before my surgery. The plastic surgeon marked on my chest and discussed what he'd be doing. And then finally, it was time to go back. Two nurses came to roll me back. I remember feeling sad, anxious, nervous, relieved and scared - all at once. I said "see ya soon" to Will, and the nurses pushed me back to the operating room. I remember the giant doors. The ride wasn't long, but my mind was racing. I'm certain my heart was pounding. I was trying to remain calm, but I was really nervous.

I remember there being several people in the operating room. I heard my surgeon's voice. Being a contact lens wearer, I couldn't see very clearly. I already had to hand my glasses over to the nurse. They asked me to move from the rolling bed that I was on, over onto the operating table. They told me where to place my arms. I remember being concerned about the IV getting hung up on something as I moved, but I got settled in. Once I was positioned there, I took a couple of deep breaths into the mask - as instructed - and it seemed like only moments later, and I was waking up in recovery.

When I woke up, I recognized one of the nurses from my lumpectomy surgery. I felt a little bit of pain. I remember them telling me that if I felt pain to ask for pain medicine, so I did. That turned out to me a mistake. This was my second time under anesthesia, and the first time I had zero problems. This time, I got sick. I don't know if it was from the pain medicine or the after effects of anesthesia. I stayed sick that entire day and into the next morning. The nurses switched me over to pain medicine taken in pill form. I tried to eat and drink water, or eat ice, but I couldn't keep anything down.

I stayed in the hospital until 4 p.m. the following day. I was in my room for around 24 hours. It seemed much longer to me. I tried to nap often, but that first night was hard. There are all sorts of beeps and alarms. When my IV fluid was empty, an alarm would sound, and I was the only one who would hear it. I'd wait for as long as I could stand it, and then I'd press my nurse alert button. I really hated bothering them, because I could tell that they were so very busy, and I didn't feel like my concerns were urgent. Every time I would stand up to go to the restroom I would need help because for some reason, I didn't yet have shoulder bags for my two On-Q pain pumps. They were giant balls - bigger than a softball - and they had to be held and carried each time I got up. And I had the IV stand to deal with too. On top of all of that, every time I would stand up, I would get sick. It was awful. I felt helpless and depressed on top of the pain and overall discomfort. I just wanted to go home, but I couldn't until I could keep food down, go to the restroom and manage my pain. I tried to time my requests to go to the restroom as far apart as I could stand. I'd note the time I got up and if I felt the need to go again, I actually rationalized in my head if it had been long enough since the last time I got up. I knew I'd throw up, and I knew I'd have to ask the nurses for help.

Will stayed with me all day long. I woke up after one of my naps - sometime around 10 or 11 p.m., and Will was still there in one of the super uncomfy chairs. I felt really bad. He told me he wasn't going to leave without me knowing it. I told him I was OK, and that he could go sleep in a comfy bed. He always gets up early, and I knew he'd be back very early. During the day my sister brought my son to see me. They brought me red roses, a teddy bear and a get well balloon. I was so happy to see them. I showed him my IV and all the things that were coming out of me. I also got a lovely flower arrangement from my team at work. I was grateful to have people thinking of me. Will was in charge of updating close family and friends that day, and I made it a priority to FaceTime with my mom. I knew she wanted to be there too, and I wanted her to "see" me. So we FaceTimed that afternoon when my pain medicine was at its best.

There were other unpleasantries during that 24 hours. My nurses would check on me and take vitals every 3-4 hours. I developed a low-grade fever overnight. One of my drains came apart and I got the fluid all over me. The nurses helped clean me up. I had to have blood drawn at what seemed like 4 a.m. I'm not sure what time it actually was, but it was before 7 a.m. - while Will was at home. I also had to do those breathing exercises to prevent pneumonia. Those lovely people came to have me do the breathing exercises 3 times while I was there. 

The next morning my general surgeon came to check on me. He told me that in order to go home I had to be able to go to the bathroom; I had to have my pain managed; and I had to be able to keep food down. After that overnight stay, I was determined to meet those requirements. He also told me that getting up to move around would likely help get rid of that low-grade fever. I was really afraid I'd be sick if I moved, but I tried it. I was so relieved when I could move around without feeling sick. I eventually took a few laps up and down the hallway - with Will's help. We got to peek into the nursery (there weren't that many babies in there that day). It passed the time to get up and walk, so we walked 2 or 3 times.

My boss and a teammate from work came by to visit me. I was feeling so much better by then. And the nurses were discussing releasing me, so I was feeling good. While I had guests, the nurse came in to take my IV out! I was thrilled. I was going home! Will helped me pack everything up into the truck, and he was able to drive the truck to the patient pick up door. We got everything we needed, and instructions for taking care of my drains, and I got to take the wheelchair ride downstairs.

Getting into the truck, and going over all of the bumps of the road wasn't fun. But getting to sit in my own house, in our recliner, in front of our TV made it all worthwhile. I was finally home.

When I got home I looked like this. I had an elastic binder that used Velcro to close it. I also had four attachments - two On-Q pain pumps that were contained in black zippered bags, and two surgical drains - the nurse navigator gave me pink bags with ribbon straps to hold the drains in. The very tiny pain pump tubes are visible above my binder. The larger drain tubes were coming out of each of my sides.

Close up of the bags. The clear thin tubes belong to the pain pumps; the red larger tubes are my surgical drains doing their job.

The drains truly looked like grenades. I used a lanyard around my neck to hold them while I showered, and I alternated a few different ways to deal with them. I used the pink bags for a few days. I used my lanyard sometimes as well. And, I used giant safety pins to attach them to my binder or camisole. I had my drains for two weeks. We had to use two fingers to "strip" all of the fluid and tissue out of each tube, measure and record the output and time of measurements during that time. The amount of fluid decreased over time, and the color of the fluid gradually changed from red to reddish to pink to brownish yellow.

I had sutures holding each of my drain tubes in place. These things were sore, and were one of the worst parts of this whole ordeal. Each time I'd bump one, or adjust my posture in my recliner, it would hurt. I would finally get one side to stop hurting, then the other would start hurting more. I also had one incident where a tube got stuck on a kitchen drawer handle. Ouch. I was way more careful after that incident.

On Friday, June 5, 2015, I had an appointment with my plastic surgeon to have my pain pumps removed. I didn't see the surgeon at the appointment, as he was in surgery. The nurses removed the pain pump tubes. The tubes were very thin, and the place they exited my chest was taped to my skin, so they weren't bothersome. The nurse simply removed the tape, and pulled the tubes out. There was a LOT of tubing inside of me - way more than I expected. The removal didn't hurt at all. It just felt really odd to have it exit my body. I got Band-Aids over the exit spot in my skin. The nurses also stripped my drains to show us how. THAT HURT. I was way more careful with tugging on the exit point during the stripping. It really made me hate the drain stopping procedure. But my drain tubes were indeed clear after that.

I got my appointment to return for my drain removal - Monday, June 15, 2015. If everything was going according to plan, this would also be my first saline fill into my tissue expanders.

Mastectomy Day

IV is in place. They used lidocaine to numb my hand a bit before inserting it. It really helped (compared to surgery #1 for my lumpectomy.) Now we wait. I had a tracer injection to identify the lymph nodes that need to be removed/biopsied. It takes a couple of hours for that to be ready to go, so I'm here. Waiting anxiously.

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.

Relaxation

Pre-surgery bubble bath!

Nails Off!

It's Saturday, May 30, 2015. Time to get my acrylic nails and toenail polish removed before surgery. See us later, little guys. We'll meet again soon when I get a brand new, fresh set! Surgery is on Monday, June 1, 2015. Let's do this.