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: http://www.lds.org/ensign/2006/02/refined-in-our-trials?lang=eng

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.

5/10/13
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?

Walking!

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.

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.

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!

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.

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

High-Dose Methotrexate

It's official: I survived the first round of chemo! I am 1/6 of the way done! Wow. Saying that actually makes the finish line seem really far away. So I am going to stop thinking about that ridiculously small fraction and focus on the fact that I made it through an entire round, the world hasn't ended, and I haven't felt ANY pain in my leg since I started chemo. Since I have finished a whole round, I now have some sort of idea what the next many months will look like for me (I know some of this is a repeat).

Day 1- Get chemo for 7-8 hours
Day 2- Get chemo for 7-8 hours
Day 3-9 Feel really sick
Day 9-20 Feel good, but get tired easily and sometimes a little queasy
Day 21-25 Check into the hospital and stay for 5 days while I get pumped full of poison/other fluids
Day 26-27 Feel okay, still a little sick and tired
Day 28-32 Check into the hospital and stay for 5 more days
Day 33-36- Feel okay
Start over

I know, I know. I didn't blog about my hospital stays. I guess I can catch you up. I had to stay in the hospital twice for high-dose methotrexate. These weren't emergency hospital visits, they were a planned part of my chemotherapy and will unfortunately be happening every round. Methotrexate is very effective in killing cancer cells, but could be devastating for many of my good cells if it wasn't followed up with a "rescue" 24 hours later. So they give me this other drug called leucovorin that rescues me from the poison they just pumped into me, give me lots of fluids to flush it all out of my system, and monitor me very closely until the methotrexate is out of me. That's the short version anyway.

I doubt you want a play-by-play of the 10 days I spent in the hospital (most of which consisted of sleeping, watching way too much TLC, and knitting) so here are just my most favorite and unfavorite things about staying in the hospital.

Favorites:
-The fun bed
-I could ask the nurse for a sack lunch any time I got hungry
-Walking around my floor while pushing around my IV stand
-Watching football games and movies with Michael
-Nurses from my first visit hearing I was back and coming to say hi
-Visits from family
-Having food brought to me for all three meals- this was an unfavorite for the first visit, but by the second visit I figured out what foods were safe to order
-Having lots of time to knit

Unfavorites:
-Nights--between having to use the bathroom every 2 hours and nurses coming in to give me meds and draw blood every 2ish hours, sleep was hard to come by
-Nurses coming in while I was sleeping in the middle of the night or morning, flipping on the light switch, and trying to hold a conversation with me
-Being tethered to an IV at all times
-Trying to change my shirt with tubes going from my chest to an IV stand. I had to get pretty creative sometimes.
-My face getting really chubby from all the fluids. At least I think it was the fluids. I'm going to say it was the fluids.

K, I'm just going to apologize for how wordy this post is. I can't think of a single blog I like to look at that isn't 75% pictures, at least. I will make a conscious effort in the future to take pictures of everything. And just so your click over here to my blog isn't totally in vain, here are two random pictures I just took of myself on the webcam so you could have pictures. Be grateful because it was super awkward to sit here in the infusion clinic and take pictures of myself.

Finishing knitting my second scarf

Me pretending to be smiling at something on my computer
screen. What? Me taking a picture of myself on my laptop?
No no no, there's just something funny I'm reading online.