LA Surgery 2 and going home

 I am SO happy to be home. I cannot even express how much it means to be home. Trying to heal and go through something so big away from any of your normal comforts is no joke. After the first surgery, I wasn't sure what was going to happen with pathology. In the first few days waiting for the results, I was too sore, tired, and annoyed to even care about them. My primary goal was to get out of the hospital and get back to Derek at least at the apartment nearby on the USC campus. 

Once back, I had to adapt to the apartment. The beds there oddly came up to my belly button. I'm fairly tall so that’s saying something. So, I'd try to get my butt partially onto the bed then use the desk next to the bed to push myself back further with my left foot. Once I finally made it into the bed, I'd carefully get into a comfy position trying not to use my abs/stomach much. I've always been a side sleeper, primarily a right side sleeper, but now I had a drain tube and ball protruding from my right side and obviously, though they opened the center of me, the actual tumor removal surgery was in my right pelvis area. So, laying on my right side was out of the question which was a challenge in and of itself. If I wanted to get onto my left side I used the headboard of the ridiculously high bed to pull and roll myself. If Derek was next to me, even in his sleep, I'd grab his hand and he'd hold his hand/arm strong so that I could pull myself. He didn't even wake up. Sleeping, in general, was difficult. Your core of your body really controls everything so every move you make pulls and affects that area. 

The other thing that needed adapting was the tub. The tubs there had very high side walls so trying to get into it was difficult because my pelvis and leg are sore and weak. I'd have to take a safety pin and pin my drain to the shower curtain so that it wouldn't hang out of me and pull with the gravity. This way it would slide with me as I moved. 

Derek had bought me a zero-gravity lawn chair to use in the living room as the couch there was a slippery fake leather, very low to the ground, and it was in sections that didn't connect, they were just pushed together. There were a couple nights I slept in that chair to avoid getting into the beds there. I never really got super anxious about the pathology results from the first surgery after I was free from the hospital. I was just so happy to not be in that hospital room alone anymore. 

It was a week to the day that I got the results. I logged into my patient account and there it was ready for me. I'm not going to lie, clicking on that report made my stomach drop. This was it. This determined my next phase. Would I have the second surgery? Would I go home and start chemo again indefinitely? So many questions went through my mind. Then I clicked on it. The results were astonishing. Dr. Tseng himself said he was not optimistic for good results and he fully expected to send me home to start chemo and the process of controlling the cancer with that. BUT, the results said that the front tumor had NO viable cancer cells. I read it over and over again. I sent the report to a couple friends trying to get some sort of assurance as to what I was reading. They sent it to some of their friends and we all understood it the same way. Yes, you'd THINK those words in the report are self-explanatory but when you're expecting the worst, you want to be absolutely sure. 

I emailed Dr. Tseng for clarification. He responded the next day and said he had the previous day off, read it, and that by the way he took it, it too, was wonderful news! He said "this is good news! Second surgery early next week?" My heart just soared. What a miracle! He said he wanted to double-check with the pathologist. He emailed back right away after screenshotting what he said to the pathologist and the reply. "Hi- For Toni OR on 12/29, so her tumor (all pieces) had more or less total necrosis from her neoadjuvant therapy!?" The pathologists reply, "yes!" Insane! Even Dr. Tseng called later and said that just typically doesn't happen. He has seen it twice in his entire career and only once with a sarcoma! This made my heart skip a beat. I'm telling you all right now, I AM A MIRACLE! This is how I know my path to God and all the prayers from all of you have not gone unheard! 

So now, we set up the second surgery for the next Wednesday (a week and a day from the last major surgery). In the meantime, Derek and I went to celebrate with dinner at his friends' house. Having them here was such a Godsent. They lived less than ten minutes away and helped us so much. Wonderful people. My brother came to visit that Monday. We talked, played games, and I was just so overjoyed to see him and how much he cares. Our relationship has blossomed so much over this journey. 

Wednesday came quick. I repeated the check-in drill and left Derek at the elevator again. Back up to the same pre-op area. I immediately looked for Kaylee from the first surgery but she wasn't there this time. Luckily, I was a bit more composed for this surgery. No tears this time. Another urine test, IV, and lots of doctors going over the plan. Then just like before they brought my bed into the very cold OR. This time, I was put to sleep through IV meds, so no count down, no mask, just lights on, then lights out. 

I woke up without opening my eyes but I could hear people talking to me. They were telling me that they were just trying to find a room for me. No ICU this time, straight to a regular room so right off the bat, I felt a weight lifted off of me. This must have gone ok! I officially remember opening my eyes in my room. Same floor as last time just up the hall from the old room. My nurses were much better this time, a couple even remembered me. Oddly, my eyelid was cut, the left side of my face, chest, and ribs felt bruised. Once I saw pictures from surgery, it made sense. I was lying on my left front/side during all of the surgery which was about 4 hours. 

I was instructed not to walk for 24 hours as the incision on my butt didn't have staples but the dissolvable sutures so they wanted that outer layer of skin to heal a bit before I stood. As soon as the 24 hours hit I was wanting to walk. Nurses were busy so I had to wait an extra hour for that first walk but I did well. My butt just felt like one gigantic charlie horse. I didn't really have to meet any requirements to leave this time I just had to stay long enough to know my drain was doing what it should and that its out-put was looking ok. I was ready to go asap. 

Dr. Ung, the doctor that assists Dr. Tseng came in the following morning and said he was surprised to still see me there because he half expected me to escape! He's not wrong, I thought about it. He said I could go that day. When he came into the room I had already dressed myself and started to tidy up and gather my things so I think he knew I was leaving whether or not he said I could. He removed the drain from the first surgery. A quick snip of a suture, and a fast pull of the tube. Very awkward sensation but a nice relief once it's out. 

Derek walked over to meet me at the entrance of the hospital. My nurse wheeled me down the sidewalk outside and asked if he was picking me up. I told her he was meeting me there so that we could walk back to the apartment a couple blocks down. She gasped. She didn't like that idea. I told her I was ok and that I'd go slow. She basically told me I was crazy and was very hesitant to let me go with him. It was a gorgeous, hot sunny day. Great day for a walk. 

Now we wait for pathology results a second time and set an appointment with Dr. Chawla in Santa Monica. He's the new medical (drug/chemo) oncologist. 

My mom and Brent flew out the day after my hospital release and Derek flew home the day after that to be with the kids. I wasn't sure how to feel about this. I was so happy to see my mom but Derek leaving made me feel like I had to things myself. I know my mom would help at the drop of a hat but she has shoulder/next problems so I was determined to do things myself. Luckily, Derek bought me a step ladder to get into bed, and a 5-gallon bucket to sit on in the tub. Now, with two separate incisions, I could really bathe or shower right so I would put a towel on an upside-down bucket in the tub. Sit on it and fill the tub and use a washcloth to wash myself. The only hard part without him ended up being in the middle of the night when I was use to being able to reach over grab him and he just automatically help me turn over. 

My other worry was what if the pathology report from this surgery was bad? I don't want to be alone getting bad news again. I was alone when I found out I had a huge mass in my abdomen, I was alone when I found Baldwin fucked up and it wasn't a large cyst, I was alone when I got the call that I was indeed diagnosed with cancer. I did not want to be alone without Derek again for bad news. I kept trying to remind myself that even if the results are bad, they DID get out the whole tumor with no issues but still the thoughts were there. I would feel uncomfortable grieving around my mom and Brent just because I know how hard I fall sometimes. No one can help or snap me out of it, but Derek just hugs me and lets me scream and cry. 

I set up a telemedicine appointment with Dr. Chawla. He was very no-nonsense but kind at the same time. He said if I were his family he'd have me do two more rounds of Trabectedin in one month. He said he thought we could get me to a "cured" status for a while at least. I still had to go to Santa Monica to sign a paper saying I'd allow tumor marker testing to check for mutations and see what drugs it responds to. That trip really wore me out, I was utterly exhausted traveling there even though most of my time was spent sitting. 

I got my follow-up appointment with Dr. Tseng moved up to Thursday and had booked a flight home that afternoon. I was ready to jump ship the second I was given the OK. My appointment was at nine AM and I was on the way to the airport at eleven. Dr. Tseng agreed with Dr. Chawla and reiterated how impressed he was with my pathology results. The second one came in the night before and said that 95% of the back portion was also dead. So that means out of that whole HUGE tumor (front and back) only 5% was alive. So AMAZING!!! Again, he was just excited and couldn't believe it. Honestly, I couldn't either! 

The flight home was very uncomfortable I was so sore and so tired but it was worth every second to get home to my kids. They were surprised and I was overjoyed with love and happiness. I laid awake most of the night just admiring them. They both slept in my room. I really just couldn't be happier being home and in my own bed. No bed compares to mine. My body needed it. My heart needed my family. My soul needed Wisconsin. 

I know my situation is owed to God, all your prayers, Dr. Tseng, and Bonnie Kinneman. Those four I truly believe are the reason for my outcome. Don't get me wrong, I've worked hard, changed a lot of things about my life, but without God, I couldn't do those things so I feel my fight falls under His category. 

I know that at any moment things could change and I could be back where I started but this has been the hardest year of my life. So many ups and downs and unknowns, but I've learned so much about myself and life… I don't think this happened for no reason. I was meant to fight this battle. I was meant to do the things I'm doing. I want to run with it. I want to help others, share my story, do any/everything I can to contribute to sarcoma research. 

Even though I'm not done, I honestly can't imagine my life without cancer. If I'm so lucky… how do I live life without it? I can't imagine not having treatments all the time. I can't imagine any of it. I will not allow myself to take life and my dreams/goals for granted again. Here's to life!!!