Update: Finished treatment September 2016

It's been a month since my last radiation treatment and I guess I'm finally coming around to posting about it (kind of tells you how busy life has been). First of all HOORAY to be DONE! We've all been waiting for the fall season to be here when I would be complete with my cancer treatments.  I had a hard time accepting this because I am annoyingly stage 4 and I had this constant nagging reminder of treatment for life you'll never be done, Lisa! A few weeks ago I was playing the piano in our home. Little Violet was puttering around dancing and hitting the keys and I was playing music from the Primary Children's Songbook. I was struck with a thought/revelation. It was so overwhelming and powerful.

See, I was understandably carrying a burden I didn't know what to do with. I was doing well, but still living with metastatic breast cancer, My life stopped and I was face to face with my own mortality. How do I live with this disease? The unknowns? How do I be happy to be done with treatment, knowing it technically isn't over? What I felt that day was I didn't need to worry about being stage 4. I don't need to focus on that part right now. It sounds simple, but it was a big moment for me. I had to really let go of those fears. I decided right then to not live in more fear than I need to. I now have freedom to experience joy and be happy. What a liberating feeling! I'm focusing on becoming healthy and doing everything that I've always wanted to do in my life. So grateful to be alive, but more importantly so grateful to feel JOY. Because I fought so hard to live, I now have a different perspective on life and that is truly a gift.

I want to update everyone on what is going on from here on out. First of all, radiation was exhausting both physically and mentally and I think it's going to take a long time to recover.  Matt's parents came over everyday for my 6 weeks of radiation, my mother-in-law would stay with the kids and do whatever was needed at home (I just wanted her to love up on the kids and play with them) and my father-in-law drove me the 40 minutes to the hospital. Some days I had other appointments, but most days it was just my 20 minute radiation appointment. Then he'd drive me back home and based on how I felt that day they would stay or I would want to take over and attempt at motherhood. I'm so grateful to have had them by our side everyday for so many months. A lot of people don't have that kind of support, I don't take it for granted. My kids benefited the most, having gotten so much closer to their grandparents :) I stayed strong for the most part, but I have to say I did struggle leaving my kids everyday. My heart completely broke when Nicholas would cry when I'd leave or if I had to miss picking up my Kindergartner on his first week of school. I needed a daily nap and I needed help with my kids. It was hard and humbling. It made me appreciate things that were always taken for granted. The hard part wasn't receiving radiation, it was not being me because I was so sick from treatment. Slowly, week by week, I gained more energy. Now that it's been a month, I can take care of the kids without help and Matt can get a full work day in. We've figured out a new normal and hopefully as each week or month goes by, I will get stronger and stronger.

Matt came with me to my last radiation appointment. It was a cute date! He got to meet my technicians and see them prep me on the machine. The last 5 treatments were a boost radiation dose to my scar line. It was like a big metal stencil and they radiated the heck out of my scar. I also met with my radiation oncologist one last time. Here we are waiting for that appointment.

I found the photo of Matt and me at my very first appointment when I was first diagnosed (with Violet in tow). Quite the comparison. Can't you see the change in our eyes? But mostly we both have less hair, haha.

My radiation oncologist expressed the hope he had for me. He said he'd like to see scans in a few months and there was probably a 50/50 chance of seeing the cancer again. A coin toss, you guys. I don't think I'll forget the look on his face when he held up crossed fingers and then so sweetly grabbed my hands and said "We'll pray."

My doctors have finally come to the point where their work is done. They did everything they could to save me and rid my body of cancer and it worked. I can always see the relief in their eyes (vs the fear I saw when I was first diagnosed) and so I will continue to do my part to keep my body as healthy as I can: breathe, drink lots of water, receive all my vitamins through healthy food (I do take a vitamin D supplement because I don't drink milk and one girl can only eat so much salmon...), exercise daily, stretch, stress relief. I began endocrine therapy which is a daily pill call Tamoxifen. So far little side-effects (mild hot flashes). I need this pill because my cancer was 10% estrogen positive so we know we can inhibit growth to any lingering cancer cells. I will also be receiving my targeted therapy drugs Herceptin and Perjeta every 3 weeks. The Huntsman opened up an infusion center at the new University of Utah Healthcare Clinic in Farmington (if you're local, you know how exciting that is!) so I only have to drive 10 minutes for those appointments. I didn't realize how quickly 3 weeks creeps up, it's a new way of life but it's doable. I have minimal side effects from these drugs too. I had a lymphatic massage from my lymphedema specialist last week and was relieved to confirm there is no lymphedema or swelling or fluids or inflammation in my arm or chest. What a blessing! I am still and always will be at risk, but it is very manageable to do a small massage and stretching every night to lower my risk and treat any fluids that may be built up. Radiation did a lot of damage, but I exercised, stretched, lotioned, and massaged my way through it and that made all the difference. My skin looks and feels amazing now and I couldn't be happier.

The radiation department left me with a certificate of completion which was super cute of them. I also got a lovely soft blanket that is one of the new household favorites. Here we are outside celebrating this mom being done with treatment!

Thank you for all the continual love and support and prayers! I know so many are still praying for me and my cute family. I have a CT scan scheduled in November, pray I stay NED. Pray we see no tumors. Matt and I are picking up the pieces from our crazy year and figuring out how to move on, but we are doing it with smiles on our faces and while holding hands. Life is so good and I'm grateful to be alive, be a mom to my cute silly kids, and to still plan a future with Matt. Find joy in the journey.

That Time I Threw the First Pitch

Salt Lake City has a AAA baseball team called the Salt Lake Bees (affilliated with the Angels MLB team where I'm from, yay!). Every year they have a game around Mother's Day called "Paint the Park Pink".  It's a game to raise funds and awareness for breast cancer. I knew this game was approaching because The Huntsman Cancer Institute was doing the fundraiser at the game to raise the funds for research. I saw a few posts and ads about it and thought it was really cool.

Back in April, my social worker sat with me while I received chemo and told me the fundraising coordinator for the event had asked her to nominate one or two women being treated at the Huntsman. She wasn't sure exactly what it would entail, but said it was probably throwing the first pitch. She had thought of me and wanted to nominate me for the game. I was so surprised! There I was, sick and receiving chemo and being asked to do something really cool! I said of course I would love to! Knowing Matt and the boys would love to participate also.

I received a phone call from the coordinator a few days before the game. We worked out the details of my involvement and what we would be doing. If the donors paid a certain amount, they were able to participate that day with the team and the players would wear a jersey with the name of who they were playing for. The coordinator said we could hang out in the press box before going down to meet and speak with the team before the game. Then we would go onto the field so I could throw the first pitch. Then after the game, they wanted me back down there along with the breast cancer researchers from the Huntsman to accept the big check from all the donations.  We were really excited to participate!

It was cool to experience all the behind the scenes stuff. Everyone treated us so kindly and we enjoyed some free drinks!

It had rained earlier in the day and so we got to see them clearing off the field. Probably my boys' favorite part of being in the press box, haha.

Another woman was there with her family and kids. She was about a year ahead of me in treatment. I was encouraged by her words and was happy to see her so healthy (and with hair!). It gave me hope to what I could look forward to after treatment. Her family and my family headed to the locker room to speak to the team. I spoke first. I was announced as a cancer survivor and said "well not yet!" I showed them my bald head and said I had my 12th chemo the night before. They clapped and cheered for me. I continued to tell them how important these fundraisers are. I told them the research done from these donations will benefit women like me. I told them about my family and my diagnosis. I told them how grateful I was for the doctors and researchers at the Huntsman Cancer Institute and how despite such a hard time in my life, I felt so good being treated there. I looked around the small room at their faces and so many of them were emotional. I realized that most people know someone who had or has cancer and how important it is for us to have these conversations and to bring awareness and (I think more importantly...because I think everyone is already aware of breast cancer) fundraising to try and treat metastatic breast cancer. I felt really good after speaking to them. Andrew especially enjoyed being in that room too, he looked super cute with his glove in hand.

Being on the field reminded me of my cheerleading days! The boys loved running around the dirt and saying hi to Bumble the mascot.

Did I prep to throw the first pitch? NOPE! Everybody asked me that when they found out I was going to do it. Then I started to get nervous thinking maybe I should have practiced. I wasn't sure how far the pitcher's mound really was from the catcher and I DID NOT want to come up short or throw it way off. I mean, I have a pretty good excuse for not being at my athletically best, but still!

I'll give credit to adrenaline, I was happy to make it to the catcher. He signed the ball for me and we got to keep the ball. My entire family came to the game. It was so much FUN! Baseball games are meant for families. We enjoyed the atmosphere and watching the players win in their pink jerseys.

After the game I brought Matt, my brother-in-law and cute nephew down on the field with me while we got a picture with the big check. I was so shocked to see they had raised over $28,000 for the Huntsman Breast Cancer Researchers. I met the three researchers and they explained to me how they were planning on using the money. Studying further the HER2 gene and researching further what causes early stages to metastasize. They told me breast cancer research is so expensive which made me so happy to support a fundraiser where 100% of the proceeds go to research.

The night ended with the biggest firework show. I felt really lucky to be chosen to participate in this important event, I think it will be a new family tradition to do every year :)

Radiation Update: 7 left to go!

My 3 beautiful kids

I don't know what I was thinking. Radiation is a piece of cake? I think I'll spend the rest of my life comparing all physical ails to chemo, which is a shame. Radiation is a complete different beast, and yes in most ways it is a piece of cake compared to chemo, but radiation is. so. exhausting.

30 treatments. Stand up and then lay down 30 times. Up and down! That's how many radiations I'll be getting by the time I'm done. That many days I have to go in there. 30 treatments is a lot. Matt started going back work everyday and so it was the perfect time to jump into a better routine.  I am so lucky to have my mother- and father-in-law at my house everyday. Matt made a google calendar of all my appointments at the cancer center so my in-laws know when to coordinate and be at our house.  I tried my best to schedule radiation for the mornings or late mornings so we all could have some consistency. It's a 40 minute drive to my cancer hospital so it's almost an hour and a half of driving everyday. My father-in-law has been more than happy to drive me there after dropping off grandma to tend to the kids. It has become such a lovely little routine, we feel so lucky to have the help. When I think about what we would do without them here, I am stumped and become emotional. I really have no idea. Radiation has been very "doable" thanks to them. The kids look forward to seeing them everyday, it is so much fun.

I love returning home to big hugs and happy faces. It pains me to leave them everyday, but I think they know I don't want to go and I promise lots of one on one time when I get back. My oldest started kindergarten this week which is super fun and exciting, so we have added that to our morning routine as well as radiation. I think it's working out ok and now that I only have 7 left, I am very very excited to be done and move on with my life.

What are the side effects of radiation? Fatigue. I feel it so much more now, really everyday is worse. And if I do more physical activity (like exercise or even run errands) I literally can't move or keep my eyes open afterwards. Yikes. I thought 3rd trimester pregnancy fatigue was bad! I've been lucky enough to get a nap in mostly everyday. I'm working on going to bed earlier at night so at least I wake up feeling energized. But besides the fatigue, I don't feel sick at all. My appetite has really come back, I am so grateful for that. I think the chemo really has worn itself off. Yay!

My hair growth in one month

The only other side effect I am experiencing is the nice sunburn on my skin. I was and still am a little scared and nervous how much damage this will do to my skin. It looks and feels like a sunburn from my chest down to my ribs and all under my armpit and side. I also have a burn on my neck where the radiation is targeting the lymph nodes. I am very diligent using heavy moisturizer and aloe vera. Sometimes it feels dry, sometimes it feels more burned, so I switch off. Unfortunately I ended up with a small blister on my side. I can't feel it, but I have an antibiotic cream and special bandage to keep it covered so it doesn't rub on my clothes or get infected. It's not too bad. Just add it to my many other daily routines to manage the cancer treatment side effects. It truly never ends.

I really can't complain. Despite all these radiation treatments, I am feeling more of myself again and I see the light at the end of the tunnel. From here on out I'll live in fear of recurrence, but I'm learning that even that isn't the worse thing in the world. I feel so blessed and lucky. Isn't that strange? But I do. Everyday I am with my family means I am blessed. And I am not just here, I am getting well again and look forward to getting my strength and health back and hopefully run my household and take care of my kids full-time again :)

My cancer hospital has a wellness center that I have been taking advantage of since beginning radiation. I did a session of acupuncture to help regulate sleep (thanks chemo) and to hopefully improve the neuropathy in my fingers and feet. The chemo I get every three weeks makes my neuropathy worse so that didn't do much, but the acupuncture has helped me fall asleep and stay asleep every night. I used to have to take medicine to help me fall asleep, it was causing me anxiety and obviously affecting my life so I am so happy with the results of doing one acupuncture session. I recommend for stress and sleep issues, for sure. I have been getting lymphatic massages every week and learn so much each time. I do have some inflammation and swelling in my right arm due to having 24 lymph nodes removed and then doing all this radiation on top of that so I'm grateful I have a wonderful specialist who is treating me so the swelling won't get worse. I don't have lymphedema, I don't want lymphedema and I'm doing all I can to prevent it from happening to my arm! The third thing I'm doing at the wellness center is their POWER recovery program. I had a consultation with one of their doctors and exercise specialists to go over my treatment history and what I wanted out of this program. I wanted to have energy through radiation (and beyond!) and to get back some upper body strength since having lost so much from surgery. I did an assessment and they created an "exercise prescription" for me full of resistance training, cardio, and stretching. I have the next 3 months, everyday, all planned out for me and I'm so happy to start exercising again! There is a gym at my hospital with these exercise specialists so I've been going in twice a week and have been training with them and learning so much. Eventually I will get a gym pass and continue it on my own. It just feels so good to feel good and be able to physically exercise again. Yay!

Me and my cotton men's white T. Radiation has me so stylish :)

Matt and I took the kids up the mountains to a beautiful lake this last weekend. We enjoyed an afternoon full of playing in the sand and splashing in the water, all with the beautiful mountain backdrop. I stayed out of the sun and did very little, but the fatigue hit me hard by the time we got home. It's a shame I can't keep up, but I am working on getting healthy again so I can be there for my cute husband and kids.

I hope everyone had a wonderful end to their summers and are having good "back to school" experiences. I love you all and thank you for your continual prayers :)

Update: Radiation Begins

Getting ready to start radiation

Have you ever heard of the expression "flying by the seat of your pants?" This is me everyday (and it's a funny image). If you know me, you know I love organization! I love sitting down each night and looking at my planner and my to-do lists: creating new lists and crossing off items on the old lists. I think of things I need to plan in the coming days and weeks and move forward with organizing my plans and thoughts so life can go as smoothly as possible and everyone is happy and taken care of. My only talent is organizing! I love it. When I was first diagnosed and the night before starting chemo I organized and cleaned out my entire bathroom. For hours. Clutter and dirt bring unwanted stress and organizing and cleaning areas of my home gives me control over something negative in my life. It was a coping mechanism before and during chemo, but the months of chemo taught me to let life happen. I feel myself gravitated to other coping mechanisms or maybe just accepting my new chaotic busy life that I can only do so much to prepare for the next day or even an hour. Plus, I am so tired all the time, doing the minimum sure is enough for me. It was overwhelming at first, but I've learned that "flying by the seat of my pants" helps me feel less stressed. Not sure how, but it does! I guess I'm learning to focus on being in the present and in that day's moments, leaving little time to worry or spend so much time planning for things that don't necessarily need the attention. Coming out of this chemo fog is wonderful, but at the same time I'm trying to catch up with things. What did I miss out on all these months? What is going on, you guys? What's up? Haven't talked with you in forever? Oh we did talk, I don't remember.

I don't remember anything! Those months of chemo are a fog. I reread this blog and other posts and it feels surreal, I hardly remember writing or feeling these things. It feels like a dream or an out of body experience.

I'm not sure where I'm going with this (maybe giving excuses to why I haven't updated this blog), but to say that if you don't hear from me it's because life has been busy! Everything is going at 100 MPH and I'm trying to catch up (hanging onto the back of our 100 MPH life ((by the seat of my pants?)) Life has been crazy busy, but crazy good. There have been wonderful blessings and tender mercies this last month, I'm not sure where to begin!

Let's start with the question I get the most: How are you feeling since surgery?  I am very pleased with how well my incisions look and are healing, I have very little pain, and my range of motion is getting better and better everyday. I lay on my stomach and side now, and can pick up and hold Violet for longer periods of time! Feels so good to move around almost normally (reaching up high in kitchen cabinets, pushing myself up to stand, holding my purse over my shoulder, picking something up off the floor, driving, etc). My surgeon said 6-8 weeks recovery and I'm almost to week 6 and seeing and feeling improvements on a daily basis. So happy to have the worst part behind me!

Currently and moving forward with recovery, I am working with a lymphedema specialist, getting a lymphatic massage each week for the next month or so (during radiation treatments). I had one today and it hurt. Have you ever had a sore muscle? I'm talking painfully sore muscle? And you ask someone to massage the muscle, but ow...be careful, it's sore! Well imagine someone (what it feels like not what she actually did) pushing and squeezing that muscle as hard as they can! That's a little like how it felt today. The rest of it was very relaxing and I'm grateful for this therapist who is doing her best to help and educate me on how I can prevent lymphedema (I have about a 40% risk of getting it).

My compression sleeve and my new wig :)

 I didn't start doing daily stretches until 2 weeks after surgery because it hurt to lift or move or relax my arm. But I learned it's supposed to hurt and pushing it a little more everyday is how you recover. OH! So I did that.  My friend suggested I follow along with this video to help in my recovery, so I started on the two week mark.

How did I do? I cried hard as I sat on the couch and watched this woman do simple stretches. I felt defeated and mad and discouraged. How awful is it to not be able to lift your arm? I let me pity myself and then I got off my butt and did it...for 5 minutes. It hurt so bad. She was very encouraging and empathetic as she instructed in this video, I needed someone's empathy (thank you, Miranda Esmonde-White). Now I can do over 20 minutes of that video before I start feeling pain. The body is amazing, and I'm sure you've heard it before (I know I've heard it from so many people since my diagnosis): "attitude is everything". Recovering from cancer treatment is more work and just as hard as the treatment itself. It's a full time job.

The second update is starting radiation. Since I have (had?..have? I think I decided to say "I'm living with") inflammatory breast cancer, I was given the standard of care for IBC, the tri-modal treatment of chemotherapy, surgery, and radiation. What is radiation? Is it like chemo? I'm getting these questions a lot, cancer is such a huge part of my life I forget not everyone knows what I know (haha). Radiation is not at all like chemo, it's not systemic. But it is like chemo in the way it kills cancer cells as well as some good cells too. Remember the high dose radiosurgery I was going to have? What I'm doing now is not that.  There is also radiation that is placed inside the body where the person needs to be quarantined because they are radioactive. I am grateful that is not my kind of radiation, I am not radioactive, you guys! There are many different kinds of radiation for different cancers for different parts of the body, different radiation oncologists with specialties, etc. I am being given a low dose of radiation to my chest, armpit, and the nodes up towards my neck on just my right side. It's a low dose, everyday for 30 treatments (minus weekends and holidays) which comes to be about 6 weeks. Have you ever gotten an x-ray? It looks and feels a bit like that. Before starting radiation, I went in and made a cast of my upper body laying with both arms up over my head and me looking to the left. The radiation is focusing only on my cancer side, but I needed this cast (and 5 tattoo markers) so I can line up with the machine the same way each treatment. My doctor took a week to "map out" my radiation plan by looking at my scans as I laid in the cast. 

Trusting these doctors and technicians to line me up the right way everyday when receiving radiation was hard the first few times, but I'm getting use to it now. I was extremely nervous something would go wrong and the radiation beams would hit something they weren't supposed to. I trust them, they know what they're doing.

I've had 5 treatments so far. My nurse said it takes 2 weeks to notice the changes in my skin and the side effects of being tired. Luckily this radiation isn't to my stomach (I don't get nauseated) and will hopefully miss my other organs (like part of my liver and lungs and throat) so I don't feel any other side effects. That's what they say, but after my first radiation I was extremely fatigued, nauseated, and felt dehydrated. I found that an odd coincidence, but it improved over a few days so maybe it was the lingering side effect of not being fully recovered from chemo. Who knows these days. The radiation department at the Huntsman Cancer Institution is a big area that is buzzing and is a "happening" place. It's a change of pace that took me a while to get used to, but I like it. I now find my way around the radiation oncology department (I used to get lost finding the dressing room). I change into a robe, put my stuff into a locker, and go into the waiting room. I use the same radiation machine everyday, it has to be that specific machine. There are a few other women who are there everyday like me that I get to see and chat with. I haven't mingled in person with other cancer patients so it felt good to experience it all with other women too. We all have breast cancer and are being treated by the same doctor on the same machine. These women drive from out of state or over an hour to go to radiation, puts my 30-minute commute to shame.

When it's my turn, I enter the big room with the big machine to receive the radiation. They have my cast ready and I lay on my back, raise my arm and turn my head into the right place. They line me up just right. From the ceiling shines down a light in the form of a measuring tape and they use that and other lights to match up the markers on my skin to the exact same spot. I hear the technicians say to each other "3mm to the left" and then move me ever so slightly.

Being that accurate scares me. What if I sneeze! I'm afraid to take a deep breath. I second guess my position and want to make sure I'm set up right, but also so afraid to move at all. I'm not allowed to move. My friends who have gone through radiation before helped me learn to meditate and relax. I hate feeling so helpless lying there, being lined up to receive this cancer treatment. I feel so foolish sometimes, I don't want to have cancer! I don't want to be there, I don't want radiation, I don't want any more side effects and I don't want to leave my kids everyday. I do not like green eggs and ham, I do not like them Sam I Am! (sorry my 3 year old is obsessed with this book so it's always stuck in my head.)

So I'm lying there, feeling vulnerable with my flat chest all lined up for radiation. The technicians leave the room and start the machine. It moves up to my left (the way I'm facing). The machine is at least 2 feet in diameter and I watch as it adjusts to the right position. Then for about 30 seconds I hear  a fast "click click click click..."

I close my eyes and imagine I'm at the beach or Matt is embracing me with my head on his chest...

and then the machine moves to my right, I can't see it but hear the whirling noise. I want to peek to see it, then I panic because I'm afraid I'm going to forget and accidentally move. I close my eyes again and breath slowly, imagining hiking on a beautiful crisp fall day and watching my boys explore trees and streams throwing rocks...

Then that's it! The technicians come in and move me out of there and I get changed and get to go home. It all takes about 10-15 minutes. I feel nothing (like an x-ray).

I'm sure in a week or two my skin will start to look like a sunburn and will only get worse. I have creams, oils, aloe, and lotions I'm already using to hopefully prevent any really bad skin effects.

I've been very diligent, trying to protect my skin the best I can.

Many have asked me why I need radiation since I had a complete response to chemo. It's tricky explaining this, and I wish it wasn't this way, but just because we can't see cancer in a scan, it doesn't mean it's not there. And just because the pathology report came back clear, it doesn't mean the cancer is going to stay away forever.  

I checked out a few books describing cancer to children and I particularly liked this book's way of explaining it. Cancer plays hide and seek. The cancer is hiding and the doctors try and seek it. We can only find cancer when it grows big, either from seeing it in a scan or feeling the tumor in your body. 

Just because we can't see it, it doesn't mean it's not there. The idea behind radiation for me and other women with IBC is to "mop up" any remaining cancer cells whether there's any left or not. This is a big part of the tri-modal treatment and without it, all the work chemo and surgery have done would be undone. Radiation helps lessen the chance of recurrence. Since IBC spreads to the skin, I get the full blown radiation, the most any breast cancer patient can get (just like chemo and surgery, again... IBC is the breast cancer you don't want). I remember reading a statistic early on in my diagnosis that the recurrence rate in IBC if radiation was not done was 90%. With radiation the recurrence rate (with stage 3 IBC) is still high at 60%. Those numbers give me the chills. IBC is the highest metastasized of the breast cancers and is the least funded and researched. Since I was diagnosed in January the Inflammatory Breast Cancer Network Foundation has made great strides in causing awareness and raising funds to support researchers and doctors and other IBC specialists. Terry Arnold, the founder of the IBC Network, runs the site and an an online support group with over 500 women who have or have had IBC. As much as I don't want to be part of this group of women, I look up to many of them, I've sought out advice by those more knowledgeable and experienced than me, and I'm grateful I have connected with many other young moms like me who were recently diagnosed with IBC. We share and support each other, they've become very special to me. If you want to fund a breast cancer organization that uses 100% of it's money for research, fund the IBC Network Foundation.

In summary, I'm doing well and plugging along. I'll continue to have radiation everyday until the beginning of September, I have my Herceptin/Perjeta infusion every three weeks, meeting with my oncologist for blood work every 9 weeks, and I'll continue working with my physical therapist.  I have been blessed with a wonderful mother- and father-in-law who have moved back to the country and devoted their time to helping out my little family. With them in our home, tending to the children and driving me to appointments, helping out with whatever else is needed in our home, Matt is able to go to work and I'm able to take care of myself as I recover through these radiation treatments. I have big plans to get strong and healthy again so I won't need so much help with my three little ones, but for now the kids are so happy to have their grandma and grandpa over everyday. I like to think my little Violet is lucky to have "two moms" as me and her grandma take care and enjoy her every day. I am trying my best to see the glass half full, make lemonade from lemons, etc in this situation. I believe it's from all the prayers coming my way. I know it's not coming from me, I am most definitely getting help from a loving Heavenly Father. I feel guided and directed and comforted. I know in my heart this situation is temporary. I know that because it is temporary (awful though it may be) I can still enjoy this time and appreciate all the good around me. There is so much to be grateful for in life and I am lucky to have seen the love and kindness from so many.

My boys and I made a paper chain to count down each day I get radiation. 

Surgery: Recovery and A Complete Pathological Response

I have officially completed the second part of my tri-modal treatment plan and that is an amazing feeling. I've come so far and have accomplished so much including being able to say I am NED (no evidence of disease)!!

Thank you all for your concerns and love and support! I meant to update the blog sooner, but I've been selfishly enjoying my kids, husband, and my parents being at our house, so I didn't get a chance to come on this blog to give everyone an update on what's going on.

Quick version-Surgery went well. I'm almost 2 weeks post-op and doing amazing! I feel better and better everyday and getting used to my new body. Kids are thriving, husband is happy, and we are ready to move on with recovery. 

I want to update you all on the last few weeks. 

I didn't have too much time to prepare before surgery. Surgery was scheduled 3 weeks after my last Taxol, but that first week and a half was spent being sick from chemo and then I had those radiation appointments. So really I had one full week to enjoy myself before my big surgery. And then I learned that the only free week I've had since January, the Dalai Lama visited the Huntsman! I'm so bummed I missed out on seeing him. I spent my free week with my family! I wanted to pack in all of our summer fun in one week. We went swimming everyday, to the movies, visited with family and friends, t-ball games, and went to Lagoon (our local amusement/water park). It was a lot of fun! I wanted to enjoy my kids and have them see me as I usually am, active and involved.

We had the roller coaster to ourselves!

I held my sweet Violet girl as much as I could for as long as I could. The one thing I can't do while recovering is lift anything more than 10 lbs. That and the added wiggles this girl puts out, I knew I wouldn't be able to hold her for weeks or possibly months. Made me sad, but glad I would have Matt and my mom and dad to take over and give this girl all the love she deserves (and bring her to me so I could kiss her and squeeze her arms and legs!)

Most women when diagnosed with breast cancer have a choice of what kind of surgery they will have. There are different types of surgeries that can be done, some women can spare parts of their breast to aid in reconstruction or have partial mastectomies or even lumpectomies. Lots of women have their breasts reconstructed at the time of surgery. Not with me. Inflammatory breast cancer is the most aggressive form of breast cancer, it's a monster. There's no shortcuts or options. A modified radical mastectomy with axillary node dissection is the removal of the entire breast and as much skin as possible plus all of the lymph nodes in the armpit. There is absolutely no reconstruction for a minimum of two years. That is the standard of treatment for IBC and that is what my surgeon knows to give me the best outcome of beating this disease. Why is this? All patients with IBC already have skin involvement (the cancer had spread to the skin as a "rash" upon diagnosis) so there is every reason to be concerned if any skin was left over after surgery. There is a very high rate of recurrence for IBC in the skin or on the chest wall so this type of surgery can lessen those odds of recurence. I know there is a lot of radiation given to the chest, armpit, and neck after surgery and that can damage any reconstruction started which is a reason to delay reconstruction (and with the high rate of recurrence, it could do a lot of harm to start reconstruction only to have the cancer come back to that area).  There was no medical reason to remove my other breast, but it was my choice to. Reasons were obvious, symmetry and peace of mind. For me it was improving my quality of life for the long term. As an active mom I knew my life would be better if I didn't have my other breast lingering around, always needing to wear bras to make me even. My surgeon agreed to do the double mastectomy as long as I'd have no regrets. No regrets! I absolutely love my surgeon and because of how amazing she is and my trust in her, this surgery experience was the best it could be. I had complete faith in her.

I did my best to not flood my mind with sad thoughts of losing my breasts before going into surgery and was lucky to have a good day before my surgery. I got to visit with lots of family and friends who came over to show their love and support. I loved being distracted and especially putting off thinking about surgery and packing for the hospital. All things I would do just the morning of. I have to be brave these days, it's all part of accepting this cancer and accepting living with the long term side effects of this disease.

The hospital set up for me to arrive on Monday at 6am on June 27th at the Huntsman Cancer Institute to get prepped for surgery. Come clean, no lotion, no make up, no fingernail polish, no eating or drinking starting at midnight the night before. Bring loose clothing and arrange for someone to take you home, husband can sleep on the couch bed in the room. You will be staying overnight because they need to observe you for 24 hours. Bring picture ID and Insurance card.

Got it.

What a strange morning. I remember waking up early for both Nicholas' and Violet's scheduled births. It felt a little like that. We left before the kids woke up, I knew they'd have a fun day with their Nana and Papa. Matt and I were so goofy that morning. Why were we so giggly? I was the first one there and the first one to get called back. Urine sample and robe change. I love those gripped socks they have you wear. And they still gave me a cap to wear despite me not having any hair? I met with my surgeons and anesthesiologists and nurses. I got set up with an IV (not using my port for surgery since the port is close to the surgical site on my chest) and took some pills. I started to feel..excited. It begins! I didn't want to do this. I wish I didn't have to, but I gave no time to pity myself. I was oddly looking forward to this surgery. My surgeon wrote a 'yes' on each breast another 'yes' by my armpit by those lymph nodes. She used a marker to map out where her incisions were going to be made. She explained how she would do the surgery and how she would try to make me as flat and symmetrical as possible. She's so great, you guys! Matt gave me a sweet blessing before they took me back. They quickly whisked me away to the operating room so I kissed Matt goodbye and I awkwardly laid in the bed and entered the bright cold OR. A dozen people were zipping around, I made eye contact with them, all I could see was their eyes because they were wearing masks and caps. All suited up to aid in my surgery. This big surgery that I have no choice but to endure because of stupid cancer. Because my body decided to multiply bad cells over and over again and not stop until tumors were made and grew and grew and spread...

I hate cancer.

I was feeling loopy from those pills, but remember my anesthesiologist putting the mask over me. I breathed in and whatever I breathed in made me cough. I remember my surgeon standing to my right and my anesthesiologist explaining why I coughed and telling me to breathe in again...and that's it. Even that little memory is hazy. 

Waking up from anesthesia is what I was nervous about most. I've had surgery before so that part scares me. It's scary to black out and to know you will be waking up in pain and somewhere different then where you were. How much time has passed? How did surgery go? Who are these people taking care of me? I hate those feelings.

Waking up from anesthesia is not really waking up. You begin by hearing things. You hear noises and people talking and machines beeping. I couldn't open my eyes or move or speak. I was very relaxed and sleepy, but I felt pain in the very center of my chest, my sternum. I hear a women next to me. I peep my right eye open just enough to make out an outline of nurse next to me. I manage to mumble words, telling her about my pain. 

"Do you want morphine?"

"yes..."

I go back to sleep and am awoken to "How's your pain, do you want more morphine?"

"yes..."

Or something like that. Give me all the drugs! I vaguely remember a female patient in bed to my left. I could hear people around her, I don't remember what was said, but there was a lot of commotion over there and I tried my hardest to turn my head and open my eyes, but I couldn't. I peeped open them enough to see the time. There was a big clock right in front of me on the wall (I'm sure not a coincidence) and it was almost noon. I knew I had gone into surgery about 7:30am so I figured I had been out for about 4 hours. 

I vaguely remember the power going out and a backup generator starting immediately and everyone being relieved. 

I slowly came to. Very slowly. Actually I never actually "came to" fully, just a bit more alert and able to open my eyes and communicate (just a little bit more). Because the next thing I remember is I am in a hallway being wheeled to my recovery room and seeing Matt. Matt! HEY! I remember he told me my surgeon had said the surgery went very well. All good news. 

For the next, like, 12 hours I was in and out of sleep. Each time I woke up (mostly to my medical team of nurses and doctors checking on me) I felt more "awake". But I conked back out as soon as I closed my eyes. This is when Matt took this photo of me.

I was super happy here! I felt great (pain meds and anesthesia lingering) because surgery is done and I DID IT! 

Yesterday I went through my phone and read through my texts during this time. So funny! I don't remember responding to texts or even that instagram post I did. Luckily it turned out ok, but I think it's funny Matt let me talk to anyone since I was so loopy :)

My blood pressure was really low (the lowest it got was 78/39) so that was fun. I was very dizzy for days, and my throat hurt from the breathing tube placed down my throat during surgery. All little things to add to the pain and discomfort of a new body. I was up and walking around hours after surgery. I made myself do that every few hours.

I realize most don't want to hear or read about the nitty gritty details of this kind of surgery. I'm not going to put up any post-surgery mastectomy scar photos on my blog. The internet has a lot of photos for you to see if you are so curious. My scars aren't as bad as I thought. Almost two weeks out and I'm feeling more used to them. It's actually really cool! Removing a body part is a lot. Physically and emotionally. There are lots of changes to get used to. One major "thing" when removing breasts, is the need to train your body to redirect fluid that would flow to that area to other parts of the body. There is drainage that goes through your lymph system and especially without any lymph nodes in my right arm, I needed drains.

Drains are the pits. I had three. One on each side for the breast and an extra one one my right side for my missing lymph nodes. Drains have a long tube coming out of the body with a little "grenade" like bulb that gets filled at the end. The tubes are the size of a large straw. They enter my body on my side and drain the fluid that would fill my chest or arm. The first few days there was a lot of fluid, needing to drain it every few hours or so. Before you empty the drain, you have to "strip" it. You pinch the top part that enters my body and you guide the fluid down the tube with your other hand until it fills the bulb. It doesn't hurt (if done right) and isn't that big of a deal. It was really gross to me at first. It's not just fluid, but other floaty things and I think that's so gross, even though it's my body. Each day we recorded less and less fluid because my body learned to redirect that fluid or absorbed what was left. Super duper!

The first night in the hospital is a bit of a blur, but I remember my sister and my Aunt Annemarie visiting me. I was so drowsy and could hardly turn my head to talk, but I am so glad I got to see them. It felt good to talk and know what was going on. I love my family!

Then the next morning my parents brought the kids. I was SO happy to see them. I sat in the chair in our room so when they came in, they wouldn't see me looking all sickly in bed. That meant, of course, my bed was up for grabs. My cute nurses brought the boys some snacks in those plastic bins meant for patients to "get sick" in, haha. They had a grand ol' time. It's important to me they have good memories, keeping things as positive and "fun" as we can. When the boys started to get a little rowdy, Matt took them out to the garden area outside for a little walk. It was nice to visit with my parents and see little Violet. She grows bigger and bigger everyday, I swear.

When Andrew (my 5 year old) came into my hospital room, he walked right to me and looked at my chest and said "yup, I can tell they're gone." I thought that was so funny! I'm very open and honest with Andrew so he knew what my surgery was going to do. He's my biggest cheerleader and says things like "I'm proud of you, mom" and "you're so beautiful". I love him!

Do you know what's funny? I think Matt slept more than me. He slept hard that night and all morning. There were lots of doctors and nurses and students that came and in to check on me and he snored through all of them. When my surgeon came in I had to yell "MATT!" to wake him up so he could hear what she was telling me. I remember we both even took a morning nap. We've had a long few days, it felt good to get a lot of sleep and rest.

Matt was good to me and helped me dress out of my hospital gown and drove home very carefully for my sake. Luckily I had my mastectomy pillows for the drive home, they were made by my cousin and Aunt, aren't they cute?

I was very comfortable sitting and sleeping in my bed. Some women told me to sleep in a recliner for a few weeks, but my bed was just as good. I am now sleeping fine flat on my back. I may even be able to sleep on my side soon! Here I am the day after coming home from the hospital. Me and my three drains and my On-Q bag.

The black satchel around me is part of my On-Q accessory. What's the On-Q all about? My surgeon asked if I wanted to use this pain relief system, I agreed and I am so glad I did. The On-Q pain relief system is a big ball of medicine (I carried it inside the black pouch) with two very small "spaghetti noodle" sized tubes coming from it. My surgeon placed these tubes under my skin and around my incision during surgery. The idea is the On-Q ball slowly releases the pain medicine over the course of  5 days. She said this ongoing local anesthetic helps to not only give me  pain relief, but I also won't suffer from the side effects of taking more pain medicine. I didn't like the idea of two more small tubes coming from my body, but I was game. I hate narcotics and wanted to take the least amount needed to keep me comfortable.

I posted this photo of the On-Q "ball" on day 5. It turned into a rod, letting us know it was empty and time to remove the small tubes. The tubes entered my skin around my ribs. I was nervous to remove them, so I asked my mom to do it. We were thinking there would be an inch or two of tube to pull out. We were so wrong. As she started to slowly pull the tube out I felt a tug under my skin, up in my chest. I was not expecting that. I started freaking out, crying! Matt said the doctor had told us she would coil it all around and up in the surgery site. What?! How do I not remember this? It felt so icky and I wasn't prepared to pull this long almost 2 foot long tube out of my body. But my mom did it! It didn't hurt, but I hated it. You can see the long tube that was inside my body in the photo. EW! My non-cancer side wasn't so bad or as long, thank goodness!

I stayed in bed for the rest of that first week. I tried to get up and walk around every hour or so. I needed to diligently take my pain medicine and slowly stretched my arms a couple times a day. I crocheted a blanket for Violet and visited with family and friends. I was happy to get little time with each of my children. Here is my mom and Violet reading a book with me on my bed :)

Here I am on July 3rd, me and my three drains. I had my drains safety pinned either to my shirt or the top of my pants. It hurt if the drains hung down because of the tug. When I showered I would safety pin them to a lanyard I'd wear around my neck. Pretty fancy stuff!

The Fourth of July was exactly a week after surgery. I woke up, took the biggest dose of pain medicine I could, and was ready for the day! We did the parade, the kids swam, we went to my sister's house for more swimming and a BBQ, and we finished the night with a lot of fireworks. The kids had a blast. I am so glad I was able to participate and for us to keep up with traditions and making more memories. I mean, isn't this what life is all about? I wasn't NOT going to spend my favorite holiday in bed feeling sorry for myself. I am so glad I got to enjoy this holiday. I was really tired by the end of the day, but it was very worth it.

The next day was my one week post-op appointment with my surgeon. My incisions looked great, no swelling or sign of infection. We talked about stretches for my arms and I even got to take 2 of my 3 drains out. My lymph node drain still needed another week because even though there was a low output everyday (less that 30cc) it's best to leave those in for a minimum of 2 weeks. Here I am in the car with my drain covers. Didn't want to gross anyone out at the Hospital :)

My surgeon blind-sided me with good news. I wasn't expecting the pathology reports to have been completed but they were. "I have good news from your pathology report!" I could see a smile in her face, she was so happy to tell me good news.

"You had a complete pathological response. ZERO of the 24 lymph nodes that we removed had cancer in them. And the skin and the rest of the tissue was free of cancer, too."

I cried. I was a little shocked, I'm not used to this good news. I thought because I have a monster cancer, I would have a hard time ridding my body of it. What does a complete pathological response mean? It is the best news any cancer patient can receive. It means the chemo worked. It means the chemo had wiped out my cancer. It means we know what made my cancer grow which means we know how to shrink or destroy it. It means if I had a little hope before, I have a lot now. It means the months of being sick from chemo was worth it. It was worth it because it did its job wiping the cancer out.

WOOOOOOOOOOOOOOOOOOOOOOOHOOOOOOOOOOOOOOOOOOOOOOOOOOO!!!!

With that clear scan of my liver plus the remove of my breast and lymph nodes, I can now say there is No Evidence of Disease. No tumors. No cancer!

We are SO happy! We are finally seeing the end of this treatment. It's been a hard 7 months, but it's been worth it now that I can say there is no more cancer :)

Prayer and faith work. It's real. I never doubted it, not even for a second, but I see faith in a different light since my diagnosis. I had to relearn it because what I'm experiencing is hard. I feel my faith getting stronger everyday, how cool is that? I know the good feelings of faith and hope with the combination of praying and the 40 day fast have helped aid me in my treatments and recovery. I know it. I am very much a practical person and I'd be the first to say, "it was the chemo and the doctors and the surgeons who rid my body of the cancer" because YES without treatment I probably won't be alive right now. But to look at myself and see how I am today despite having gone through what I've gone through, I am amazed I look and feel the way I do. I know there is a divine power looking over me.

Having cancer, an aggressive and most lethal form of breast cancer that I felt growing in my body, is unimaginably scary. I know fear. I know how it feels to have everything, everything, that I have ever known or learned put to the test. I whole-heartedly believe that everything in my life has prepared me for this moment. I don't know why this had to happen to me. I don't know why I got breast cancer at 28 years old. I don't know why me and my family have to experience this hardest of hardship. I'll never know. I don't believe "this happened to me for a reason".  But I do know that Heavenly Father loves me. I know that he is cheering for me. I know he wants me to get through this triumphantly. I know he wants me to experience joy and love through the pain and sadness. I've felt that joy and love. I hold onto it. I felt the difference in my recovery physically and mentally as well as emotionally and spiritually as I experienced the ups and downs associated with having my faith tested. What I know is Heavenly Father doesn't want us to go through life blindly - we should always be learning and growing as a person in all aspects in life, leaning on Him to guide and direct us. In other words, we should never be sitting around twiddling our thumbs and expect a big answer or something major to happen just because we pray for it. We have to act. I'm acting the best I know how. I trust myself and I'm feeling more peace in accepting our new normal.

So when I say thank you for your prayers or for those that are still participating in the 40 day fast, I mean it. I wouldn't be feeling the way I do today, happy and full of hope, if it weren't for the faith of so many.

I'm learning more everyday. I feel myself healing on the inside, I know the outside will come in time.

Next for me is prepping for chest radiation and meeting with a lymphedema specialist to try and prevent lymphedema in my right arm and to begin physical therapy for my arms (I need to get my 'range of motion' back).  These appointments are in the next few weeks as well as my every 3 week herceptin/perjeta targeted therapy chemo. I'm meeting with my medical oncologist to talk about my prognosis and what we can expect long-term wise now that we know the pathology reports came back clear (yay!). Not sure what to expect. This has been quite the ride, but I'm hoping for smoother sailing from here on out! Pray for continual good news and keep us in good spirits. 

Love you all xoxoxo