- My laptop cord is broken.
- This has probably been the darkest, most challenging time in my life and not a time I've been particularly excited to write about.
I think the hardest thing about surgery has been all the unforeseen complications. From the moment I woke up in the hospital it has been one thing after the other. Chemo was hard, but everything went as expected or better than expected. I was so optimistic, but time and time again since my surgery my positivity has been shattered by more bad news. As much as I'd like to brush the hard things off and tell you it hasn't been that bad, that's just not honest. It's been bad, it's been excruciating, and it's been overwhelmingly discouraging.
For starters, that week I spent in the hospital was horrific. It's something I still don't want to write publicly about. One thing you should know though is that while I was there I found out that as a result of the surgery, I now have nerve damage in my foot. I only have feeling in half of my foot and I can't bend my foot up, so it just flops around when I don't have a brace on to hold it up. My surgeon is optimistic that I will get feeling back, but we don't know for sure.
The next item of bad news came a week after I left the hospital. When they remove the tumor, they test it to see how much of the tumor is dead (what the necrosis is) and that lets us know how well I've responded to treatments. I have felt so excited to find out the necrosis of the tumor almost since I started treatments because I've been so confident that I've responded well. A good response is 90% or higher. Unfortunately I found out that the necrosis of the tumor in my leg was 75%. Now, that's not horrible, but it is considered a poor response. The survival rate of those with a poor response to chemo is about 15% lower than that of people with a good response, and now we need to try and change up the chemo. Instead of having 4 more 36 day rounds, I will now have 7 more 28 day rounds. We are also adding 2 more drugs to the recipe called ifosfamide and etoposide. Because osteosarcoma is a pretty rare cancer and the use of these drugs is new, it is unknown as to how effective these other drugs are in comparison to the ones I was already using. I guess I feel like this is my best bet though. If I didn't try changing things up, I might regret it my whole life. So I'm doing it. Wish me luck!
Another unfortunate thing is that my incision wasn't healing. It opened up and was about 1/2 inch wide and 1/2 inch deep. We tried waiting for it to heal, but it wasn't making much progress, so I had to have an additional surgery to remove some tissue and close it up. Now that it had finally closed, I was hoping to start chemo again, but my leg got infected, which can be incredibly dangerous. I am on antibiotics and hoping to start chemo in a couple weeks, but my leg is still super red, so I'm not counting on it.
Lastly, I was denied my long-term disability claim. Apparently because I saw a doctor and was diagnosed with bursitis in June, I have a "pre-existing condition" as their policy defines it. I met with an attorney to try to appeal it, but it doesn't look like it will have a favorable outcome. It's a bummer because they were the ones who were supposed to give me 60% of my salary each month and pay for my health insurance. We have other options and will be fine, but it's just one more thing I don't have the emotional capacity to worry about right now.
If you can't tell, it's been a rough month and a half for me. I really have never experienced so much physical pain in my life; I had no idea just how frustrating it is to not be able to get around on my own, to not be able to bend my ankle, and to not have feeling in half of my leg and foot. Then I had to face sheer disappointment and fear when my doctor told me about the low necrosis of the tumor and my lower survival rate. I had to have another surgery, my leg is infected, and we will soon have no income.
Life has been hard. BUT (here is the one glimmer of optimism in this blog) life would be so pointless if we never had to go through hard things. What would we learn? Would we appreciate anything? God let his Only Begotten Son go through more pain than any human being can comprehend. God allowing us to feel pain doesn't mean he doesn't love us. He allows us to feel pain so we can learn and mature and become more like him. When I'm hurting it's pitiful how quickly I forget that.
If any of you are having a hard time, this talk has made such as big difference for me.
I also want to add as a quick note that I'm not posting this because I'm looking for pity or because we're not getting enough help. We have had so much help, and it has been awesome. I'm posting this because it's honest. We're getting hit pretty hard right now, and it sucks. But at least when I'm heavily medicated and able to feel something other than physical pain, I feel that these are experiences we can benefit from.