Friday, February 15, 2013

Meeting With My Surgeon

Yesterday I met with my surgeon for the first time since my diagnosis! I have been looking forward to this appointment for a long time. As you can probably imagine, removal of the tumor is kind of a crucial part of treatment and I didn't know anything about it. Nothing. Although not everything my surgeon told me was positive, it was such a relief just to have answers to my questions and to get some sort of idea of what recovery and the rest of my life will look like.

First things first, my surgery is scheduled for Wednesday, February 20. Yeah, THIS Wednesday! I am going to have an APC, which stands for Allograft Prosthetic Composite. An allograft is bone from a cadaver (dead person). The prosthetic part is the metal part. I get to have both. I really want to include the details of surgery on here both for myself and for other people to know what's going on (I will probably even tell my parents to look at this blog for the details because it's hard to explain) so I'm sorry if this is just way too much information for you. You can skip over it if you want. I won't be sad!

Alright, so as you most likely know, the cancer is inside the top of my tibia (the shin bone). Here is a picture of my MRI. The big white spot (not the glare from the camera, but the other white spot) is the tumor in my left leg. The bone should all be black in the image, like it is in my right leg.

This is a better picture, but for some reason Blogger is automatically rotating it and I can't figure out how to unrotate it. So lame.

Here is an image of the cross section of my bone. So imagine if you cut the bone and looked inside of it. This is what you would see. (I circled the cancerous part for you juuuust in case you couldn't see it).

Alright, so that's where the tumor is. Since it is inside of the bone (which a lot of people don't realize) you can't just go in, take out the tumor, and call it a day. The bone itself has got to go. 15-20 years ago it would have been a given that I would lose my leg. Today they can do some truly remarkable things to help me keep it. It's called limb-salvage surgery. What they are going to do is remove the top portion of my tibia and put something similar to this (but not exactly) in its place.

Typically when you replace someone's knee you can just have a smaller version of that metal contraption, but because they have to remove the top part of my tibia it's a little more complicated.

Here is a model of a leg. 

Looking at this model you can see why it would be challenging to remove that top portion of my tibia. There is a tendon attached to it. They have not yet found a way to attach the tendon to a metal rod, so they have to put an allograft (remember that means a bone from a dead person) on the rod like in the above picture. The allograft they give me will still have the tendon attached. They will then suture the dead person tendon to my tendon and I will end up with something sort of like this (the top metal portion is different from what mine will be like, but the rod and bones are about the same). The black arrow is pointing to the allograft, the white arrow is pointing to my bone that's left. Hopefully you can imagine the tendon part.

Sorry, I know it's confusing, but it's hard to find images online of exactly what I'm going to get. It's a fairly rare form of cancer and the most common place to get it is in your femur. 

So I'm going to be in the hospital (my home away from home) for 5ish days and then I will be on crutches for 3-6 months. Yuck. I remember playing around with my brother's crutches and my under arms would hurt after about 2 minutes. Maybe there is a special technique for using crutches that I don't know about. I was talking to an old man with a cane and I told him I would prefer a cane over crutches. He was like "But if you have two crutches you can hit two people at the same time!" Ha ha. So that is what I plan to do to maintain a positive attitude. . . go around hitting people with my crutches.

Long term we're not sure exactly what life will be like for me. I might have a limp for the rest of my life, I might not. One thing that was really hard for me is the surgeon told me that he doesn't want me to run ever again. I think he saw my eyes well up when he said that and so he followed it up by saying "You never know, nothing is 100%." But I do think it would be a huge risk to put that much impact on a carefully pieced together leg/knee. I've never been a super consistent runner, but it's always been something that I've loved. I ran track and cross-country in high school and I've had waves of consistent running throughout the last 5 years of being in Utah. It is truly one of the best feelings to go out and run faster and farther than you did the day before. I love mapping runs and setting goals for faster times. My doctor said he would recommend things like biking and swimming, but yesterday I just felt overwhelmed with sadness because those aren't things that I'm passionate about.

I say "felt" in the past tense because today I see it differently. I realize what a miracle it is that I CAN KEEP MY LEG. Guys, I'm going to be able to walk, and swim, and bike, and do almost everything that normal people do despite having cancer, despite having part of my bone removed, and despite having a chunk of metal in my knee and my tendon sutured to a dead person's tendon. I think sometimes I'll still feel sad that I can't go out for a run and I still might be super jealous of people that post on Facebook about the races they're entering, but I just need to try to remember how incredible my body is in overcoming the things it has overcome. I might not ever be able to run a faster mile time, but I've destroyed a malignant tumor and come out on top despite being consistently poisoned for many months. At least I hope that will be the case in 5.5 months when I finish treatment!


  1. I'm not going to even pretend to understand what you're going through. I can only mention that I have a small glimpse of the sorrow of not being able to run. I have a degenerated disk (at age 32) and I was told not to twist, run or jump.Considering I'm into high impact aerobics and running..I can kind of understand the disappointment about not running anymore. The rest..I can only be glad that you're not losing your whole leg. I hope that's the last of the cancer we'll see in that part of your body!

  2. You will LOVE SPINNING. Since I will be in Utah for awhile now, we can spin together when the time comes. :)

  3. You are a trooper! I know you were worried about the running, and I'm sorry it turned out that way for you, BUT am happy that the prognosis to keep your leg is favorable. So do they sell kits to decorate crutches? You could crochet/knit an armpit cozy.... :) Take care my friend and know I will be praying for your speedy recovery!

  4. Everyone else posts about races they're running, but you'll get to be unique and post about swim & biking races you're in! That's awesome that you'll get to keep your leg!

  5. I am so glad you'll get to keep your leg! That really is such a blessing that we live in a time of such medical advancements. And seriously, biking is SO much fun! I started spinning/road biking this past summer to recover from a knee injury, and it really helps people to heal. You'll be a natural! :)

  6. Crystal, thanks for all the details of what's going on. I hope your surgery goes well. I'm praying for you! XOXOXO


  7. Hey Crystal - I am so proud of you. And I'm so glad you don't have to lose your whole leg! You inspire me, and we're praying for you (and we're putting your name on the temple prayer rolls too). You're amazing!

  8. You've been through a lot of pain and removing the tumor on your bones is a good news. At least it will lessen the pain. The operation looks complicated, but having a specialist on your side will be much easier. It's been months, how are you feeling? I hope you're recovering fast. Kristal @