If you’ve read this far, thanks for continuing on this journey with us. As you know by now our very for-serious surgery was a success, yay! The bummer was we now have a long recovery and there’s still a lot of unknowns but are so happy that the surgeons got 99% of the tumors… the rest we’ll be fighting with post-surgery treatment called mTOR inhibitors and hoping it stops any further growth.
The hospital stay seemed to go as well as we could have hoped. The first day I was basically completely bed-ridden and on a liquid only diet, that was to be expected but didn’t make the process any easier. The good news was they had me on an epidural and that thing was awesome, I had very little pain. My nursing staff was stellar and helped me each day get a little stronger and healthier.
During the surgery I ended up losing a lot of blood, the doctors said they put four pints in me and then two more over the next couple of days. Apparently these tumors were sucking me dry, gross! Can I reiterate how much I loved my two women surgeons Dr. A and Dr. T! They came in and visited me every morning and gave me updates on my progression, and Robert was there every step of the way too.
Unfortunately because of Covid I could only have one visitor and they couldn’t stay the night, so Robert was there first thing at 8am and was supposed to leave by 8pm but always snuck another 30 minutes or so before the nurses nudged him out. I’m so grateful that I was allowed a visitor at all. Kids of course weren’t allowed, but we were able to Facetime with them while they stayed at my dad and step-moms and they had a fun week, so that was good.
Hospitals are not my favorite place but one nurse told us we literally had one of the best rooms in the whole hospital and it was quite large, which made the stay overall pretty comfortable. There was a lot of downtime so I took plenty of naps and as I got stronger started to do slow walks around my floor. Robert and I also have been binge watching our favorite show from when we first got married, Friends. Because of my incision I had to hold back from laughing but it was a nice escape from hospital life. We also watched some sports (Go Lakers and Dodgers!) and a movie or two in between nurse visits and vital signs.
By mid-week I started to get up with limited assistance and I slowly met the necessary milestones in order to go home: tolerate food, manage pain, use the restroom on my own etc… that sort of thing. It was especially exciting when I switched from liquid foods to full meals! It’s the little things…oh man I was hungry. 🙂
All of the doctors were really happy with my progression after surgery and by Saturday all the teams felt I was ready to go home, and we agreed. I couldn’t wait to rest in my own bed and squeeze my kids again!
Being at home has been so great. I’m not doing much and my family, especially Robert, is waiting on me hand and foot so that I can rest and heal. The kids started virtual school on Monday and Robert and my Mom have been helping make sure they are ready to go in the morning and turning in assignments. I saw Dr. A and Dr. T yesterday who are very happy with my healing and Dr. S ordered the mTOR to get approved by insurance so I can have my first infusion next week. If you’d like to continue to pray for us, please pray the mTOR works and gets rid of the remaining disease. Thank you again for your loving words and support it really has given me so much strength through what’s been a very trying season.
1 Corinthians 13:7-13 “Love bears all things, believe all things, hopes all things, endures all things… So now faith, hope, and love abide, these three; but the greatest of these is love.”