Tuesday, March 25, 2014

My Good Friend, NED

Today is a great day. I got my first follow-up scans done a few weeks ago and they pointed out some tiny lung nodules that weren't in the write-ups of my previous scans. My general feeling was that these nodules meant the cancer was back, and my chances of living were not all that great. I wasn't depressed about it, but just thought that was how it was.

I found out today that they compared the scans closely and the nodules have not changed since my April 2013 scans. Which means the nodules are considered benign and I am NED, no evidence of disease!!! I have more time!!! I was on my way to physical therapy with Michael and I cried tears of the purest joy. The sun was bright, I laughed, cried, danced along to Katy Perry, and realized that I miss my family so much it hurts, but I am so grateful to be alive. And in that moment I felt very strongly that my dad, Amber, and Daniel are happy too. My family, that spent so many hours researching treatments, flying back and forth to visit my mom and I, making home movies in support of me, and taking care of me while I was sick is not here, but they are still pulling for me from the other side.

I truly feel overwhelmed with happiness and gratitude for how beautiful life is and for the love in my family. I don't know how long I'll live for (it turns out none of us do) but at least today it looks like I've got more time than I thought I had. NED, you are my bff. Stick around for awhile?


*Disclaimer: This was actually written on Friday.

Tuesday, February 11, 2014

Hair Growth and a Ridiculous Summary of a Tragic Few Months

It has been a crazy last few months, to say the least and I'm not even going to try to share all of the events that have taken place or my feelings, but my mom encouraged me to at least come on here and let everyone know the happy news--I finished chemo! Some friends spent the night in the hospital with me my last night there and after getting discharged, I walked next door to the cancer center and rang the bell loud and clear. Physically, I feel amazing. I have not used my cane in weeks, I don't feel sick anymore, I have some more color, I've put on a few pounds so I don't look as much like a freaky skeleton (though I probably went about putting on weight with a little too much gusto, let's be honest), and I can actually do chores and run errands throughout the day without feeling like I got the life sucked out of me.

One thing I thought would be fun is to document the changes in my appearance. Since that last week in the hospital I have been taking selfies every now and again without wearing make-up so you can see what I really look like. Here are those gems:

Nov. 13 2013 (Last week in
hospital
Nov. 19 2013
Dec. 11 2013

   











Dec. 16 2013
Dec. 26 2013
Dec. 29 2013













Dec. 31 2013
Jan. 7 2014
Jan. 16 2014



Jan. 28 2014

Feb. 10 2014






















I am loving the way I look. Especially when I look at the stark contrast between that last week in the hospital and now. It doesn't even bother me that the hair in the center of my head sticks straight up. I just love that I have enough hair for it to do that. Here is a better angle of my funky hair that doesn't stay flat and a picture of the first day in a year I woke up with bed head.



Now, this is going to seem callous, and it's possible that later I will want to get into all the touchy feely details of how my life drastically changed after finishing chemo, but for now I will give you the whirlwind summary. A week and a half after finishing chemo, I spent an amazing Thanksgiving weekend with my entire family. Five of them (my dad, my brother Daniel, his wife Sheree, my sister Amber, and her fiance Jonathan) left in my dad's plane to go home after Thanksgiving and the plane went missing. They were missing for over a month, and in that time we suffered immensely. We felt pretty sure they had passed away, but hoped and prayed with all our hearts they were still alive. A huge blessing was that Michael and I went to Brazil with his family for two weeks, which was a nice almost-escape from the anxiety. We came back to Provo and the next day flew to San Jose to be with family on what would have been Amber and Jonathan's wedding day (January 4). Thousands of people helped in the search for the plane and on January 10 they found it. Everyone had died on impact on December 1. Michael and I were supposed to move to Wisconsin on January 15, but a week before moving we decided to move to San Jose instead. So Michael turned down his incredible job offer and we packed up and moved job-less into my mom's house in San Jose. Best decision ever. Anyway, there was a beautiful memorial held for all five of our family members that passed away on February 1 and I gave my baby sister's eulogy. Michael and I are now both applying for jobs.

Wow, talk about a loaded paragraph. Anyway, I just wanted to blurt that out and let you know what's been going on these past few months. For today I only have one comment on all that happened. Cancer seems like old news. Once my family disappeared I was like, "Whaaaat? I thought my life was hard because I had cancer? What a joke." I get the feeling that's how life is. Each trial puts the previous trial into perspective. Enjoy life now, regardless of your circumstances. I thought my life was hard, but it turns out that having cancer is one of the best things that ever happened to me because of the closeness I had with my family during that time, both physically and emotionally. Literally, knowing what I know now, if someone approached me a year ago and said "You can have $1 million or cancer" I would take the cancer. Ahh, the curve balls life throws us.
My family Thanksgiving weekend

Sunday, November 10, 2013

Big News

Besides, of course, the big news that I am checking into the hospital for chemo tomorrow for the last time! I will be there through Friday and will get to ring the glorious bell before leaving. For those that don't know, when you finish chemo you get to ring a bell in the infusion clinic and all the other cancer patients clap for you. Expect a video.

As I was saying, though, there is other big news. We are moving... to... WISCONSIN! I never in a million years dreamed I would one day be living in Wisconsin, but we're doing it! Michael got an incredible job offer from an incredible company (what can I say? He's brilliant) and I'm really excited about it. He'll begin work at the beginning of February and it just feels like the perfect thing to do. After a crazy year, I just need to get out and start fresh somewhere as a non-cancerous woman.
Cheese seems to be the only thing anyone
(including myself) knows about Wisconsin.
But really, what else do you need to know
when deciding to uproot your life and move
somewhere?
Other than that, I don't have much to say, just pictures to share. These are not particularly flattering, but they are some really special, intimate pictures that I feel capture what a lot of the last year has been like for Michael and I.

Too tired to turn and face the camera. Even
though neither of us is looking, I kind of
love this picture.
That one time Michael brought the Atari for me to play at
the hospital.

I don't remember this, but judging from the shirt it was
last week.

I think this picture might be hard for some people to see
because I just look so sick and so tired, but this is what
the real, no-makeup, no-wig, sick-in-the-hospital cancer
looks like. Oh, and my arms are up like that because
Michael was just walking in for a surprise visit. Those
are my "hug me" arms.
Texas trip


Because I know everyone loves PDA on
the Internet. Just kidding, but it's my blog
so I do what I want. Boo ya. 

Tuesday, November 5, 2013

Giving Credit where Credit is Due

I am very aware that not everyone who reads this shares my religious views. With that being said, I do not apologize for the things I believe in. I do apologize if anything I say comes of as offensive or naive. I assure you that I have nothing but love for all of you. I have cried on the phone to an atheist who brought me great comfort, laughed with a dear gay friend as he cheered me up. An agnostic friend has made it a priority to call me regularly to see how I'm doing. These people, all people, are precious to me for the goodness that is within them and I hope you all know that I love you for who you are.

That being said, I want to share some really sacred experiences with you about having cancer. Things that have pulled me through and given me a renewed desire to live.

1. We believe in something called the priesthood. Here on this earth the responsibility of using the priesthood to bless others rests on the men of the church. They use God's power to bless the lives of others (men, women, children, the sick, tired, lonely, elderly...) It seems to me that every month or so I feel like I just can't do it on my own. My body and spirit are breaking and I don't know what to do so I often ask Michael for a blessing. The words he speaks are inspired and often have the immediate effect of my body being encompassed by peace and the love of my Heavenly Father. Time and time again the words Michael speaks in those blessings address fears and concerns I haven't even spoken about with Michael. One time before I knew I had cancer, but was experiencing excruciating pain in my knees from "bursitis," I asked Michael for a blessing. He told me I would become an example to the women of my church and the pain  in my leg would eventuality diminish. I wrote those words down in my journal even though they didn't make sense at the time, and months later began sobbing as I read those words. That blessing was true. Through my experience with cancer, so many women have come and told me what an example I am to them and low and behold the pain in my leg, as a result of a painful but successful surgery, is usually nonexistent. Like many personal spiritual experiences, this one personally showed me that God was there looking out for me and was very aware of my circumstances. He knew even then the pain and suffering I was about to endure in order to be healed.

2. I went through a phase where I was constantly terrified of death. I didn't want to die and felt almost with a certainty that that would be my fate. I talked to a friend that is very very special to me, Amy, and she said something to the point of, "Maybe whether you live or die isn't really the important thing you should be focusing on, but how you live your life." I completely believe those words were inspired because she changed my life. When I stop to think about it I do start to feel anxiety about leaving this beautiful world that I love, but ultimately what's important is what I choose to do with my life now.

3. There have been many times when I have just laid down in bed and cried, feeling overwhelmed by pain, sickness, and the seemingly never ending road before me of just more sickness and pain. In those moments I truly have felt God's arms wrapped around me filling me with his love and peace. He doesn't always take away the pain, but he does always remind me of the love he has for me.

There are so many more things I could share with you about how God really has assisted me and my family on this wild journey. However, I think the most important thing is that you know that I know, that through all this I have never been alone. I have felt inexplicable peace during times of immense trials. Thank you, Heavenly Father, for loving me and supporting me through this crazy journey regardless of my sometimes imperfect faith and occasionally drowning myself in unwarranted self-pity.

Tuesday, October 29, 2013

Almost Finished!

Guys, guys! I am in the middle of my last round of chemo!! Yes, you heard me correctly... LAST! In fact, I am done with all the chemos that are really scary for me (doxorubicin, ifosfamide, etoposide, and cisplatin). Actually I don't think etoposide is really a big deal, but it's hard to tell because they always give it to me with ifosfamide, which is scary for my immune system.

Anyway, my last "scary" chemo consisted of doxorubicin and ifosfamide. That one is a double whammy because the dox makes me sick. So sick, in fact, that I truly feel ill even thinking about it. And like I said, the ifosfamide is horrible for my immune system, not to mention my bladder. You may recall that ifosfamide (better known as ifex) really did a number to my bladder, so the fact that I had to get it again was scary. Dr. Litton got me all freaked out about how if the bleeding in my bladder didn't stop, I would have to get my bladder removed. Um, what? Granted, he said it was like a 1% chance, but still! Can you imagine a more horrifying thought to a 23 year old girl? You probably can. Regardless, we felt it was important for me to do this round inpatient so we could protect my bladder as I was receiving the chemo. I will, again, spare you the details, but it was a long 8 days in the hospital.

Me on day seven: Man, I need to get out of here! I am getting some serious hay fever.

Mom: Um, you mean cabin fever?

Ah, yes. The hospital was not giving me bad allergies, but rather making me go crazy from being couped up indoors. Anyway, I am still feeling crazy fatigued blah blah blah. I feel like me blogging about feeling sick and tired is getting repetitive. More exciting is the fact that Michael has been applying to jobs, and two of the companies paid for both of us to fly out, eat, and stay in a hotel so Michael could interview with them. Yay! So we got two all expenses paid vacations to Texas and Wisconsin! It was so fun, and although we're still deciding on what to do, both were excellent experiences in their own ways. I don't have any pictures in Texas, but there are a few from Wisconsin. Maybe I'll show you those in my next post since I don't have my camera with me.

Also, I know there's like this unspoken/spoken rule about never posting selfies because they are lame, but I think if you have a day where you feel good about the way you look, and publicly documenting that day makes you feel better, you should do it. Having said that, 90% of the time, I actually look like this:


So when I wore my wig and did my makeup, I obviously had to document it.



 

Friday, October 4, 2013

My Life...

...is awesome. I'm not being sarcastic, I just love it (at least this week. Who knows about next week).

I was supposed to be in the hospital this week for high-dose methotrexate, but when I checked in to the hospital, they did a blood test and my platelets were too low so they sent me home. I was originally super bummed about having to put off chemo for a week, but I realize now how much my body needed this break. I've been able to sleep in late, get stuff done at home, use the bathroom an almost normal amount, enjoy food again, and hang out with the coolest husband ever.

Highlights:
-Eating the majority of a cookie sheet full of homemade nachos with Michael
-Watching an entire season of Parks and Rec in like... 4 days
-Going to the temple with Alicia for her birthday
-Welcoming Brian (my brother-in-law) home from his mission in Russian and the Baltic States
-Getting the stove cleaner than I've seen it in years
-Talking to my aunt Melissa on the phone
-Having energy and motivation to do things! Having cancer makes you feel like the laziest bum ever so it was nice for the fog to clear and for me to feel almost normal again.

Friday, September 20, 2013

Embarrassing Chemo Side Effects

Oh, what a pleasant last week it's been. Ha ha. I tend to share really personal things on here, but the nature of my latest chemo adventure just does not allow for full disclosure. I will try to tactfully explain what's going on without going overboard on the TMI.

So what is my latest body part affected by the chemo? My. . . bladder! Trust me, this is a part of your body you want to function properly. My latest chemo was five days in a row of both ifosfamide and etoposide. Ifosfamide is known for irritating the bladder, so, like always, they gave me a drug called mesna to help protect the bladder. Clearly it did not work this time around.

I was in a lot of pain Saturday through Wednesday, having these horrible bladder spasms. When I would have one I imagine it was like a contraction. I couldn't talk through it, sometimes tears, usually squeezing anything close to me tightly until it was over. Saturday night I went to the ER where they guessed I had a UTI. They gave me some morphine while there, sent me home with some medications, and said it would clear up soon.

The ER communicated with the cancer center about what had happened and as soon as the cancer center was open again on Monday, they called me. They are much more familiar with my chemo regimen and side effects and things. They told me they didn't think it was a UTI and recommended I go to the hospital immediately. So I packed a small bag and headed to the hospital. I expected to leave within a day or two, but boy was I off. It is now Friday and I am still here.

This is where I will majorly gloss over the details. It turns out my bladder is just really irritated. They have tried a ton of things to get me better. Luckily, I'm not really having the bladder spasms anymore, I'm just painfully using the restroom every fifteen minutes to one hour, which is annoying, but a serious improvement.

Why am I still at the hospital? Mostly because my counts are just so low. Despite getting three units of blood and two units of platelets, things continue to drop, specifically my platelets. Platelets are what help you to stop bleeding if you get a cut or something. They are nervous to send me home because if my platelets continue to go down, my bladder will continue to be irritated and bleed even more. Yeah, not a pretty picture.

So I'm just chillin here at the hospital, using the bathroom way too much, and waiting for my counts to come back up.

Question: How many times did Crystal use the bathroom from 10:15am  to 10:15pm (a twelve hour period)?

Answer: 25