Saturday, July 9, 2016

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?"


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


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.

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