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

A Surprising Phone Call

Remember my post about having radio surgery on my liver? I wrote how nervous I was, I even posted on Instagram and asked for prayers. I've felt a sense of calmness all week, ready to move forward with the next step of treatment since I finished chemo. I was ready to kill off part of my liver so the leftover tumors would stay away forever. I was ready to do whatever it took to say I am cancer free.

Last night (Wednesday) I got a phone call from my radiation oncologist telling me he has good news for me...he can not find the cancer.

My liver is cancer-free.

What?! Let me explain how this happened...

I went in on Monday for for a consultation with this doctor at the Huntsman Cancer Institute who specializes in SBRT. My parents drove up from California to spend the day with the kids, and Matt and I were ready to spend the morning doing all the prep work. Meeting with this doctor and his resident, I felt so great. They thoroughly went over the plan with exactly how this treatment works and explained its great success rate, they even mentioned the word cure a few times. It felt as if they gave me the boxing gloves for my next round. Half this cancer battle is mental, these doctors know how to insert hope and I'm grateful for that.

I found my escape place at the Huntsman, here Matt and I sunbathed when we had about 45 minutes between appointments :)

Of course he gets a nap in :)

So onto the prep for radiation. This was a bit gnarly. While listening to Frankie Valli and the Four Seasons in a dimmed room, I laid on a body-sized bag that felt as if it was filled with sand. I wiggled my body to get it comfortable and 3 medical technicians pushed up the bag of sand all around me from head to toe. As they did this, the bag hardened around me, shaping to my body. Then what looked like saran wrap and another few bags of sand were laid over me and wrapped around me from the belly button down, with my hands underneath it all. It was oddly comfortable, thankfully not claustrophobic since my chest or face wasn't in the mold or covered with that stuff. In this position (my body mold, ha!) they gave me a tattoo marker (ouch, thanks for the warning) in the center of my upper abdomen.  My doctor wanted to do another detailed scan of my liver since the last one was in May, about a month ago. So in this position, I went through the CT scan with a very strong dose of contrast leaving me a bit dizzy and disoriented. That was it!

My doctor told me he and his team need a week to plan and map out how they will do the radiation and I was scheduled to get my first of three of these treatments starting the following Monday. So I came home, relieved that part was over and got ready to enjoy the rest of the week with my family with no more doctor's appointments.

Wednesday evening I was driving with my family to Andrew's t-ball game when I see I am getting a phone call. I answer it and am surprised that it's my doctor. I wave to Matt and the kids to be quiet!

Is this a good time to talk?
Yeah, but I'm in the car.
Are you driving?

This isn't a good sign, I thought.

My doctor went on to tell me he had good news. He said he's been looking at my liver a lot -- "well not 24/7, but a good part of the last few days" is exactly what he said. He concluded he doesn't feel comfortable doing this procedure because looking at my scans from Monday, he isn't sure where the tumors are. He isn't sure where the tumors are because there are no tumors. Not only could he not see any cancer, he couldn't even see the trace of where they were.

I was shocked. I was not expecting this. I didn't know what to say or how to respond. I didn't know what questions to ask or where to go from there. I was in the car on the way to a t-ball game, telling my son to put his socks and shoes on and we were talking about what we should do for dinner afterwards when my doctor called and told me my liver was cancer free. The scan was clear.

Remember the photos I posted with the measurements of the tumors? The shaded gray areas of cancer? Well, good news, they're gone! This was the news I wished I had gotten in May, but I guess it took the last of chemo to wipe it clean. This was why I did chemo, this is what I've been working towards for the last 6 months!

It hit me later that night, after the game and dinner and bedtime, when I could finally sit quietly and reflect on the meaning of it all. Not only were hundreds of people praying for me this week, my sister-in-law started a 40 day fast for me. This fast started last week. Since the first day of the fast I haven't felt sick. Literally the day before I was in bed all day, I had a constant bloody nose, no appetite, and an all-around sick feeling. The day the fast began, I felt like my old self. I did so much and not only was I feeling better physically, I was in a better place mentally. I was HAPPY! When you go from sick and sad to healthy and happy so quickly, I thought about what was different and why. I know the fasting is helping me. And then to get a phone call from my doctor to tell me (he was surprised as well, too) that after all that work and prep and doctors on my case, they don't need to do radio surgery treatment after all because there is nothing to treat...well I'd say that's a miracle.

So what now?

I talked to my doctor again today and we decided we most likely will do some sort of radiation to my liver (to get any microscopic cancer cells that can't be seen in a scan), but a very low dose over an extended period of time, not radio surgery where part of my liver dies. There are lots of options actually, and so we are going to wait until after I have my surgery and recover a few weeks to have another scan and think about the best option for me. My doctor told me today "there is less cancer to work with so this is bad news you want to have". I couldn't agree more!

<<If you want to participate in the fast for me click here to sign up for a day. Matt's sister posted these instructions on Facebook.

          Dear family, I wanted to give you all the chance to participate in the 40 day (or more) 
          fast for Lisa. The idea is to have one person fast for Lisa every day for at least 40 
          days. The fasts start at 6pm mountain time every day and end 24 hrs later. There is 
          so much power in fasting and so many blessings that can come from it.

          June is all taken, but we need to fill up July! When you sign up, please give me some 
          contact info--phone or email. If you give me email, don't put in the @, just leave it out.

          Also, the day you sign up for is the day the fast will START. So, if you sign up for 
          Sunday, you will be starting on Sunday night and fasting through Monday.

Thank you to all who are participating in this! Fast and pray for this medicine and treatment to rid my body of this disease once and for all. Pray to receive strength and the ability to endure. Pray for knowledge because sometimes I'm not sure what to make of this whole thing and the decisions we have to make sometimes feel heavy. Pray for Matt. Pray the kids will keep thriving and smiling and being themselves. I know Heavenly Father is very mindful of me and I have felt the peace and comfort that only He can give. Since I was diagnosed I looked to anyone to tell me my future, to tell me what they know will happen. It was an extremely hard to come to the realization that no one could tell me with certainty that everything is going to be ok, except for my Heavenly Father. Throughout the course of the past 6 months I reminded myself of the blessing Matt gave me and the feeling of "everything is going to be ok". I've been holding onto that feeling, trying to figure out exactly how I am going to be ok. I strongly felt today the most memorable, best, and important days are ahead of me and that is something I can look forward to.

You guys! I got a clear scan AND I get another full week of no doctor's appointments or chemo. This is my last week before surgery and we're going to make it count, cramming in as much summer stuff as possible :)

I Finished Chemo!

For almost 6 months I was put through the misery of getting myself pumped with poison. It's very hard for me to process that it's been 6 months, my brain thinks it's somewhere in late February. It's June! And I did it! 16 times I sat in the infusion room. 16 times I endured the side-effects of this harsh chemo. 16 times I had to leave my children and spend half the day at the hospital getting medicine. SIXTEEN!

I gone, done did it!

It's taken me a bit to process how I am going to mentally move on from this. Having an aggressive and late stage breast cancer means treatment for life. It means this isn't it for me as far as treatment goes. That is a hard thing to accept. I hate thinking about it.

BUT...

I decided I am going to celebrate and be happy that I finished this chemo (WEEEEE!!)! Instead of being sad that I am stage 4, I choose to be happy and optimistic that I am all done with chemo for a LONG LONG LONG time! It's a waste of time and energy to sit and worry about a future that is so uncertain. Let's celebrate instead!!

My friend Jen sat with me during my last chemo. My nurse asked if I wanted to ring the gong. Patients ring it when it's their last chemo. I wouldn't have done it if Jen wasn't there, I wasn't emotional or anything, but knew that I should make it "a thing" so I rang the gong! Yay!

I came home to this sign and the kids greeting me outside. I love how specific this sign is, love my engineer husband's mind, haha.

I spent a day shopping! It feels so great to get out and feel normal :)

This last half of chemo has been hard. I. Am. So. Tired.

Chemo feels as if the life is being sucked out of you. Death felt very close, in a dramatic way, but I'm not sure how else to describe it. Your body slows down week by week, your brain checks out, and sometimes you have no strength or even the will power to stand up and walk across the room. You feel sick. You look sick. You can't sleep it off or do anything to get better, you just have to endure it. Blah.

When I met with my radiation oncologist for the first time, he asked me "How are you doing this? How have you have managed all this chemo with 3 little ones?"

I pointed to Matt.

Matt has done everything. He takes care of me, letting me sleep or play with the kids or go for a walk or make dinner or be sad or be goofy or be lazy or be productive or anything. I have this stress-free freedom to do or not do or think or not think.

I get to be.

We've been at this for about 6 months now and Matt gets it. The best advice we've been given and from our experience when someone is going through cancer treatments, especially chemo, is to let that person do whatever it is they want to do. If it's staying in bed watching tv all day? Great! If it's organizing the linen closet? Awesome! If it's chasing your kids in the sprinklers in the backward and then walking to the store to get ice cream? Go for it!

Again, the biggest blessing has been Matt being able to work from home. I am ecstatic to be home with the kids again so Matt can go back into work. I'm not sure when that will be, but I'm starting to see the light at the end of the tunnel!

I was thinking how this happened so suddenly, so out of the blue. This cancer diagnosis smacked me in the face and changed my life forever. It scares to me think of those I love and how this can happen to them. We shouldn't live in fear, but we should educate ourselves and do all we can to live a healthy lifestyle so we can prevent any unnecessary diseases, like cancer, although in most cases it can't be prevented. (the only research I've found to link breast cancer to lifestyle is in postmenopausal women and being overweight since estrogen lives in fat cells and breast cancer is sometimes fed from estrogen...but this doesn't apply to premenopausal women (like me!)) Even the healthiest and those without a family history (like me!) can get cancer. It's more likely not to happen, but from my experience... it can happen. Cancer can grow or begin to grow and our bodies' immune system can stop it. We can help our immune system to be strong to fight off potential cancers. I'm educating myself on how to do this, for me and my kids.

Thank you to everyone for the outpouring of love and support during this tough time. It's a little unknown to me how I'll be feeling this summer. I have surgery (a bilateral mastectomy with the cancer side being a modified radical mastectomy with axillary lymph node dissection) on June 27th and begin daily chest radiation for 6 weeks starting the last week of July.

Oy vey!

I have a very good feeling that despite a heavy treatment load this summer, I will be able to enjoy myself and make memories with my family :)

This is what I looked like from last November and every month since. Now hoping to do the same, but in reverse order :)

An Update: Abdominal CT Scan

Waiting to meet with one of my radiation oncologists

I had my first CT scan since the original one. Oh boy, I am grateful I didn't do this sooner. I know why my doctor had me wait towards the end of chemo. Scans are the worst! Getting a CT scan isn't so bad, but the anxiety! No thanks. But this is my life now. It's hard to accept sometimes, it's weird to think I'll be getting these scans every few months for the rest of my life, but it is what it is!

About midway through May, I had a morning full of chemo and then 3 hours fasting before my scan that afternoon. I had to drink about 6 oz of the "berry" contrast every 15 minutes 6 times. That's two of these...

 I was feeling yucky, but I had my sister and nephew and some lovely weather to keep me occupied during this time.

Getting a CT scan takes less than 10 minutes. The only prep is fasting and drinking the contrast liquid. You don't need to change into a robe or even take off your jewelry. After lying down on the bed, they set up an IV (or can access your port). Once you slide through the machine, a technician attaches your IV to the CT contrast (don't remember the fancy name). I laid still with my arms above my head, the technicians in the other room, behind a glass window. I can hear them on the monitor telling me they're going to release the contrast. I feel it. It feels like you just drank a hot drink, but from your head to your toes. It goes fast, like 3 seconds which fills your bladder and makes you feel like you peed yourself. Then they slowly move you through the machine. Then they do it again. And you're done!

I only had an abdominal CT, not one on my chest. The way my cancer grew in my breast, it's hard to really see on a CT scan, plus the major lump that was there is obviously gone so there isn't a need (unless there was a need, but there is no need, so...no need!)

Here's what my scan revealed on the state of my liver:

The bigger tumor shrunk almost 90%
The smaller tumor shrunk almost 100%
My doctor said when he presented it to the tumor board, one oncologist suggested what we see in the new scans may be just scar tissue of where the cancer once was. One can only dream.

I attached photos to compare the before and after. The first pair you can see my stomach to the right and I apologize for the pixely image. This is the one I had biopsied because it was easier to get to.

Here is my bigger tumor. You can see the gray shaded area, my doctor measured the diameter.

 And since you just saw my cancery insides, here's a better photo of me and Violet before my appointment with my doctor (I love bringing her with me!)

I was happy to see such a big change in my tumors from all the chemo I endured, however this was a hard appointment for me. It was a reality check, a reminder that yup, I have stage 4 breast cancer. It's in my liver. It's been there growing for whoever knows how long before I had my initial symptom of a rash. I hate this so much. I hate that I'm stage 4, it's the worst part of getting breast cancer. It's every woman's fear when they get breast cancer, that it spread (blah, let's not get into that right now).

 "The horse is out of the barn" is what they say when you have secondary, metastatic, stage 4 breast cancer. The spots on my liver are so small that there were and are no side effects, which is something to be grateful for. Knowing my cancer responded to chemo makes me feel confident in going forward to the next stage of my treatment: Surgery and Radiation.

So the plan from the beginning continues. My doctor and I talked about having stereotactic radio surgery (or cyber knife) to those two spots on my liver. This is radiation to my liver, a very high condensed dose to target those two spots, like a little laser that kills all the tissue it touches. This is the best alternative to having surgery. Essentially, it has the same effect as if I had surgery itself.

In a week from today I go in to see a liver specialist to get started with radio surgery. I'm extremely nervous, I don't know what to expect or how it will feel. All in all I am feeling brave, I feel confident in my aggressive treatment plan, I am proud of my body for taking a good pounding from chemo and still ready for some more. 

Bring it on!