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!

Friday, February 8, 2013

Highs and Lows

Every low moment in this journey has been preceded and succeeded by high moments that more than compensate for the lows. Yesterday I hit another low. I got out of the hospital on Monday, but was just feeling really sick and horrible still Tuesday through Thursday. I don't usually feel that bad between methotrexate treatments, so it was really discouraging that I had to come check back into the hospital yesterday before I had even finished recovering from my previous hospital stay. My sister came to pick me up in the morning to go to the hospital and I was still in my pajama bottoms and hadn't finished packing. I felt sick and tired and essentially had a melt down. I lost it. My sister brought my duffle bag out to the car and while she was outside I burst into tears. I really just didn't see how I could go back and put myself through the sickness again. Michael pulled me onto his lap and wiped away my tears. He insisted I could do it and then proceeded to tell dumb jokes like he always does to make me feel better. I was able to pull it together and make it to the hospital, but I still had that feeling of despair sitting deep in the pit of my stomach, wearing away at my resolve to continue with treatment. Like I said, that was a low for me. The highs that have accompanied that low have more than compensated for the trials though. Like, for example:

I had one of the neatest experiences on Tuesday. One of my very dear friends and pretty much my idol in life came to visit me along with her two sweet kids. I taught with her last year and she is just everything that I want to be. Anyway, I could go on all day about how incredible this woman is, but to the point, Crystal. Geeze. She walked into my house with a huge gift bag. Hmm. Wasn't expecting that. And then I opened the gift bag. My eyes started to well up as I pulled out a beautifully crocheted blanket from the secretary at my previous school. There was a card signed by most of the faculty there. And there was a hot pink tablet case. Uh, what? My heart almost stopped. I finished pulling out the rest of the tissue paper to find a brand new Nexus 7. Yeah. Apparently the faculty at Hobble Creek pitched in to buy it for me so I can bring it back and forth to the hospital with me. I am still in shock. I couldn't believe how thoughtful they were! I am obsessed with my new Nexus. I have probably played Boggle on there over 100 times already, I'm loving playing Words With Friends back and forth with my husband while I'm stuck here and he's in Provo, and I am even typing this blog post on the Nexus. I know I've said this before, but I am just constantly blown away by how good and thoughtful people are. I couldn't even begin to list all the amazing, kind things you have all done for me, but know that the Facebook messages, texts, comments, phone calls, visits at home and in the hospital, dinners, hats, socks, blankets, cards, and letters have not gone unnoticed. You are all truly inspiring and make me feel like I really can make it through this. You guys make me want to be so much better than I am. So thank you. To all of you.

Another high was having my sister spend the night in the hospital with me last night. She climbed up on bed with me and we played Boggle on the Nexus for hours. It was a blast! I'm so lucky to have her here.

The last high was this morning. Today I went on as walk around my floor and it was so fun! If you walk around the whole floor 10 times it equals a mile. Guess who pushed her IV stand around the floor 10 times? Oh yeah. Considering I usually get tired after standing up for more than a couple minutes, this was quite the accomplishment. During my walk a bald guy complimented me on my bald head. I was like, "Do you have cancer too?" Nope. He was just a nice bald guy. Ha ha. We compared head shapes and smoothness and I quite enjoyed it. But note to self: maybe I shouldn't ask every bald guy I meet if he has cancer. Ha ha.

Tuesday, February 5, 2013

Feeling Peaceful

The lows of chemo are SO low. I haven't ever experienced physical trials like this before. When I'm sick and miserable, I sometimes even begin to question whether or not it's worth it to keep pushing forward. However, there is something truly beautiful in being pushed to your limits and then feeling completely surrounded by love, grace, miracles, and peace. There have been more times than I can even count in these last few months when I have been surrounded by angels. Sometimes they are friends dropping by to visit or bring us dinner; sometimes they are nurses sitting down in my hospital room just to talk; sometimes it's nobody that I can see, just an overwhelming feeling that I am loved and never ever alone. And you know what? Cancer is hard, it's frustrating, and it's painful, but I don't think I would wish it away if I could. It's really hard to explain, but something tells me that for the rest of my life I will look back on these experiences and feelings with reverence and gratitude. Miracles are everywhere, every single day. If there's one thing cancer has taught me so far, it's that. And if there's one thing I wish everyone knew, it's that. God sees you, he knows you, he loves you, and there really are miracles everywhere. I knew that before I had a cancer, but now that there are way less distractions in my life and I am much more frequently brought to my knees, I feel it all the time. Some people can feel it all the time without needing to have crazy, life-threatening illnesses, but I'm stubborn so I needed the life-threatening illness.

That's really all I needed to say today. Other things definitely worth mention though are

  1. My medicine is making me lose my mind. I called my aunt today to apologize for sleeping the whole time she was visiting me in the hospital, only to hear from her that I was awake the whole time, we talked, and really enjoyed each other's company. I wish that was the only experience I've had like that.
  2. Surgery is coming up in a few weeks! I'm nervous, but excited! It will be so nice to find out what the necrosis is of the tumor in my leg and get a more definite prognosis.
  3. I organized me and Michael's drawers. They're beautiful.
  4. I cleaned the inside of my bathroom sink handles. If I've talked to you in the last week I have probably casually brought this up in our conversation because I'm so proud. I mean WHO unscrews their sink handles to clean inside of them. That right there is taking homemaking to the next level, my friends. And maybe that would earn me a couple more bragging points if I could walk across my bedroom without tripping on anything. Yikes. You win some, you lose some.
  5. I am home from the hospital! Woo hoo!

Aaaaand some pictures.
Playing Set in the hospital with Amber

I can't remember for sure, but I'm guessing this picture was
not taken at the end of the game =]
Super Bowl party hospital-style