Monday, April 22, 2013

Looking Forward to Whatever the Future Holds

Written 4/22/13

Well, guys, I started chemo again this week. Way worse than I expected. I mean, I'd done this twice before so I'm not sure why it was so shockingly horrible. You go into the infusion clinic, they fill you to the brim with poison, and then send you on your way to suffer through the worst kind of stomach flu out there. I'm on Day 5 and just baaaaaarely starting to see the light at the end of the tunnel. I need to get me some better anti-nausea meds. My normal ones are just not cutting it. 

Anyway, I didn't start this post to complain about how horrible it's been the last few day. It has been horrible, and I will touch on that, but you would not believe all the amazing experiences I've had in the last few weeks.

You guys know from my previous post that the last few months have been horrendous for me. I truly felt like I'd reached my emotional, spiritual, and physical limits and then gone 1,000 miles past them. A big reason for that is I got fixated on whether I was going to live or die. Like I mentioned before, it was bad news, after bad news, after bad news and it seemed like I was watching my life crumble in front of me. I wasn't ready to die and it wasn't fair. I'm a newly wed, I want to raise kids. I want to teach, I want to serve a mission with Michael, I want to have decades ahead of me to become my best self.

One night I was really struggling and felt I needed to call my aunt Melissa (for those of you who don't know her, she is incredible, I idolize her, and she is one of my very best friends). So I called. Annnd she didn't answer. Instead of being discouraged though, I remembered that she had posted a link to a talk on my Facebook. This was the talk:

That talk made all the difference for me. I feel total peace. If at the end of this I still end up dying, that's OK. I look forward to it; it's something I'm excited for. Returning home to my Heavenly Father, loved ones that have already passed on, and and a pain-free, functional body are just some of the perks. On the other hand, life is beautiful. I have an incredible husband, I have a degree in something I love, I want to raise children, and I have so many goals for self-improvement that I want time to achieve. I guess I'm saying that I will fight for my life until the bitter end, and if that's not enough, I get to go some place wonderful and pain-free, which doesn't sound so bad either.

Yesterday I was lucky enough to have attended my best friend's wedding. I got pretty emotional during the ceremony, first of all because Jenn is one incredibly special girl who has found someone perfect for her to spend forever with. Second of all, I couldn't help but think of when Michael and I got married. As I listened to the promises Jenn and Taylor made with each other, I felt it deep in my heart that no matter what happens, if we get mad at each other sometimes, if we have financial struggles, or if cancer ends up taking my life, Michael and I will be together forever. He will always be my husband that I love. That is true peace.

Oh and people keep asking me about my wig. In the pic with the supermodel next to me (another awesome friend I will always love) I'm wearing my wig! Does it look real?

Wednesday, April 10, 2013


No, I did not have explicit permission from my physical therapist or my surgeon to do this. Also, my knee was killing me that whole night after this, but you know what? It was so totally worth it.

Monday, April 8, 2013

Life is Hard

Wow. It has been a long time since I've updated and I apologize. I think there are really two reasons why I haven't been updating my blog:

  1. My laptop cord is broken.
  2. 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.