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.


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  2. Dearest Crystal, it is so difficult to know of the hardships you (and Michael) are going through and not be able to put our arms around you and tell you that everything will be alright. You have such strength and you know where your peace can come from, even if it does not come often or easily. He won't desert you nor leave you alone, and He knows your heart, and that you are suffering. Don't give up. You are in our prayers every day. It is not pity that we feel, but rather helplessness at not being able to take away your pain and discouragement. Please know that all of your extended family and even people who have no relationship to you are praying for you and sending you love. You are ou shining star--our belief that one can get through any trial with the Lord's help. Sending bushels of love and happy thoughts to you today--Love, Grandma & Grandpa Caro

  3. I am SO sorry for what you are going through right now (and not pity, just empathy)...I can't even begin to imagine how hard it must be, but I just wanted to let you know that we are thinking of you all the time and praying for you and I just feel so strongly that Heavenly Father is with you every step, even though it may seem that He is far, far away sometimes. I know you will get through all of these setbacks and come out stronger! Keep holding on to hope and lean on others right now, because I know that one day, you will be such a strength and help for other people. You already are. :)

  4. Crystal, I am so sorry about all of this! I think about you all the time and wonder how you're doing. Thank you for sharing with us. I love you, you are even more amazing than I already knew you were. You'll continue to be in my prayers. --Michelle

  5. Crystal - you have always been a friend to people facing difficulties or hardships, doing so without the benefit of having faced true hardship yourself - until now. I can only imagine the opportunities for service you're being prepared for as you're forced to deal with pain and the most depressing of situations. I'm terrible at dealing with pain, and admire your ability to push through it. I know that there's a larger plan for each of us than we can see. I love you!

  6. I love the talk you referenced, about the clock seeming to stop during times of trial, and the person experiencing the trial being "polished a little more." This polishing during your trial is surely a long process. You are already pretty polished, but I know you will come away from this with an unparalleled glow. I love you! -Mommy

  7. Sweet Crystal,
    Thank you for sharing such an honest experience. I know you're not looking for pity, but I wish I could take away some of your pain. I love you so much...and I know your COURAGE and FAITH is not going unnoticed. The talk you shared by President Eyring was very touching. I especially like these 2 quotes: "fear not what man can do, for God shall be with you forever and ever.” and "...If the foundation of faith is not embedded in our hearts, the power to endure will crumble." I know (and will continue to pray that) you are strong enough to see this through! Remember: "Tough times don't last, but tough PEOPLE do!" Hang in there, B.T-B!! Love and hugs, Melissa (& Brian)

  8. You and Michael are so brave and so humble. Thank you so much for sharing your experiences with us. We sure love you guys and pray for you everyday!

  9. Thank you for showing me the things some of us take for granted...sensation/feeling. Never again.I hope its lack is temporary.

  10. Dearest, Dearest Crystal,
    One of the hardest things in my life was to be physically present to see the horrific pain that you went through and to have been so helpless to help you. Thanks for sharing the "walking" video. You are unbelievably amazing and I love you soooo much. Grandma

  11. You are one of the bravest people I don't know. I have read all the comments and your report as well.
    I have prayed for you every morning and night that you will get through this and that things will be
    well for you. I will continue to pray for you and that the pain you are suffering will end soon. Your folks are in my Ward and I admire them so much. They have raised you well and you will survive.
    My best to you and your family. Eileen Braun

  12. Hello Mrs. C!!! This is Eliza (note passer/shortie) and Annalyse (tall one) from fifth grade (four years ago), when you taught at hobble creek! We were the first class you taught! We miss and love you, and we always talk about how you were our favorite teacher!