Health and Patience

It's been just over five months since the last time I went in for chemo. That's weird. In one more month I'll have as many months of post-chemo as I had of going through chemo. That's weird too.

Life is so nice not being sick! This Thanksgiving was so different from last year, when I was a skeleton who was in so much pain. A year ago I didn't even know I had Crohn's yet. Last year I remember seeing so much good food, and even loading up my plate to eat, but ending up only eating a a few bites. Derek had to finish eating the food on my plate for me. My body was depleted and tired, and we hadn't even started chemotherapy. Last November was definitely one of the lowest and hardest parts of my (and Derek's) life.

But this year was so great. Health! I helped cook the rolls, green bean casserole and began learning the way of the pies, under the tutelage of my mother-in-law Mary. I didn't have room to eat seconds, but I had a generous plate and ate everything (except the jello). I even ate a few bites off Derek's plate! We have been enjoying leftovers and life.

For the past few Thanksgivings that I've spent with Derek's family, we have gone around the table and said what we are grateful for, and then we'll share a word that sums up a goal for the next year. This year I said that I was grateful for health. So grateful. Every day I thank God that I am alive, not in pain, and once again able to do things. And I'm so grateful that my family and friends are in good health too (take care of yourselves my friends! I want you all to live long and happy lives!).

The word that I chose for my goal this year is patience. I can be pretty patient with other people, but it is an entirely different thing to be patient with yourself. But that's what I need as my body continues to heal. I'm so much healthier than I've been in ages, so I often forget that I need to still take things slow. My body is quick to help me remember to slow down by quickly becoming exhausted. I need lots of rest at night and I get frustrated when I am to tired or weak to do things. Sometimes I cry when I feel like I'm not making progress. It's not easy. But it's easier when I try to point out the good things that I do have and what I can do. I'm learning to be okay with setbacks, and to look at the positive ways in which I've progressed.

Being madly in love with your best friend also helps. *saaaaaappy loooooove*


And now for some frequently asked questions!

Do you exercise?
Yes and no. I walk to school most days of the week, which takes me 30 minutes. And it's uphill on the way back, so I sometimes have to stop and catch my breath. Basic things like walking and grocery shopping are draining, so I could those as exercise. But no, I'm not out running or anything.

How much do you weigh? How much did you weigh?
I weigh 115 lbs right now!!! AMAZING. I've gained 20 lbs in the past six months. I was 123 lbs before I started getting sick two years ago, but 115 is average for both my grandmas (when they were younger) and I have the exact same body type as both of them. So I am in a really good range. Waaaaaay better than the 83 lbs of last winter. MY CURVES CAME BACK HURRAY.

What can you eat?
Anything! But I don't feel good when I eat straight dairy, so I limit that to cheese and homemade yogurt, and the small doses that are cooked in stuff. I can eat grain again, but try to limit that. Derek and I eat somewhere in between paleo and vegetarian.

Do you feel like you are back to normal?
No. I'm still nowhere near as healthy as I was two and a half years ago. And it'll take me years to get back there. But I am in drastically better health than any point in the past two years. Some things feel more normal, like being able to take care of myself, and to even take care of my husband (for the first time since we've been married), but it comes and goes. Sometimes I'll have a week or two where I'm so very tired and don't get as much done. But then other times I'll be a boss lady and clean stuff and do homework and everything. I take it day to day, and try to stay patient and positive.

And Happy Halloween (very late, but whatever) from the Von Trapp family!

Done

I am done with cancer.

Kind of.

I guess once you've had cancer you're never really done with it. I'm in remission now, which is as "done" with cancer as it gets, I guess. Two months after my last chemo (which was June 23), I had a scan done to make sure that all of the cancer is gone. I'm almost totally clean, with just a little warm spot on part of my neck. That means there's a tiny chance that the chemo didn't get all of the cancer, but that is still not super likely. It probably is just some of the cells hanging out in that spot or something like that. So we'll watch that spot.

For the next forever I'll be periodically visiting my doctor to make sure I'm staying in remission and the cancer doesn't come back. For the next year, which is the most common time for cancer to return, I'll have a scan every 3 months just to make sure nothing is growing anywhere. After a year, I'll have a scan every 6 months for a few years, and then yearly after that.

But the amazing news is that I am done with cancer for right now! I am healthier than I've been in a long time. I feel so so SO great. Life is amazing and I feel like I'm savoring every moment that I can. I celebrated when I was strong enough to do our laundry by myself—for the first time since we've been married! I take so much joy in making delicious food, and most food still tastes wonderful! Every now and then I'll eat a food and it'll remind me of going through chemo, so I'm still careful about eating things like mint-flavored stuff and jolly ranchers.

I'm enrolled in school right now (just taking 2 classes) and working part time at my old job. Derek is deep in his schoolwork and sometimes I'm amazed at how nice "normal" is. How great it is to be healthy. I thank God every day for my health, for Derek's health, for my friends and family and their health. It really is an amazing blessing to feel good.

Also, as a celebration Derek and I went on a 12 day roadtrip all over the Pacific Northwest and northern California. If you want to see more pics of that check out my Instagram or search the hashtag #millersaroundtheworld on Instagram.

Even more about the hairs

It's a good thing we shaved my head, cuz these hairs do not wanna stay in. My pillow and the insides of my hats are covered with teeny tiny little hairs. A few days after buzzing my head I took a shower and as I was scrubbing my head, noticed this:

Hundreds of hairs falling out!

Even with all of these hairs falling out, I'm still not bald. My hair has stayed relatively the same length since we buzzed it. Except for a few (like ten) renegade hairs who are like "we wanna grow!" are are an inch long. But it's cool. I just pull them out. Which is kinda fun and totally painless because my hair follicles are closed up anyway. So I can pull our hair on demand. New talent? Sure.

My armpit hairs have totally stopped growing (#chemoblessings) and the leg hairs have thinned and slowed, but still grow, especially on my knees, for whatever reason. I've lost nearly all my pubic hair (feeling very prepubescent). Eyebrows are holding out, but my eyelashes are in a pretty sad state. I could probably count the last remaining hairs. Not sure if I'll lose all of them, but it's getting close. I wore mascara a few weeks ago, and the result was mostly scary. Kind of like how Yzma has three eyelashes from the Emperor's New Groove. I definitely miss having lots of lashes, because stuff gets into my eyes all the time now.

Buuuut, have no fear because if I do lose all of my eyelashes, there are tons of great tutorials online to help out! Like this:

Barbie Doll Makeup Tutorial!!!

Who knew you could just DRAW your eyelashes on?! #lashgameonpoint

Day in the life

Here is a detailed account of Tuesday of last week. It was a chemo day, so most of my days aren't exactly like this.

8:34 am
I don't have an alarm, so I gradually let my body wake up. The sun is streaming in from our window, and I can hear birds and construction outside. I stretch a bit, and then doze off. When I'm awake again I shuffle to the bathroom.

9:40 am
I pull on my black leggings, a loose-fitting black shirt, and my gray beanie. I wear leggings everyday, and have just a few t-shrits that I rotate between. Then I slip to the couch, where Derek is sitting. He slides over: he warmed up my spot and the blanket for me. We kiss good morning, and cuddle for a bit. Derek had a crazy dream last night, and tells me about it. I try to remember my dream, but it's already evaporated.

10:06 am
"Do you want breakfast?" We eat the same thing every day for breakfast. A smoothie made from our homemade yogurt (probiotics yay!), blended fruit and Miralax. This has been a lifesaving combination for my constipation. Derek hops up  to make it, and I start scrolling through my Instagram feed, wrapped in a blanket. I get really cold after eating cold things. Today's smoothie has some pineapple in it and is particularly delicious.

10:29 am
"What time should we leave here?" Derek asks. Today is a chemo day. I remember that I had dreams about coming to chemotherapy last night. "Let's leave at like 11:30? Maybe a little before then..." It doesn't really matter what time we go. Our appointment is for 11:40, but come on, I have cancer. They nurses and doctors get it, and are flexible. Still, my body doesn't want to go. The fight of brain vs. body begins. For the next hour I swing from "We are so close to finishing! Going to chemo makes the end closer!" to "I really really don't want to gooooo. I don't want to go to the hospital. Please nooooo." Derek is patient and encouraging. He knows that the night and morning just before chemo are hard. I try to distract myself for a while by doing some family history work online. I've been finding and connecting a lot of my English ancestors, which is really exciting.

11:02 am
Derek warms up leftover rice, garlic chicken and asparagus for me. Lunch. I eat with my computer on my lap and take my anti-inflammatory pills (for the ulcers in my colon, which haven't been bothering me lately. Yay!)

11:23 am
"But I don't wanna gooooo." Brain vs. body fight continues. Just thinking about chemo makes my body shudder. Derek finishes packing my backpack with letters and a package I received in the mail. I like having "chemo presents." It helps me stay motivated. "What if we just don't go?" I slip on my Birkenstocks and a cardigan and keep whining a little. But I try to stay positive. "It's practically over, right?" and then "Let's just stay home." A lot of cancer fighting is mental, I swear.

11:35 am
We're finally leaving. We don't ever leave on time, and that's okay. I check on my herb garden on our balcony before we go. Even though we only get 3 hours of direct sunlight, my mint plant has been thriving. And my basil isn't dead yet. Watching them grow (and smelling them everyday) makes me pretty happy.

11:43 am
We get to the hospital and park. Derek carries both his backpack and mine and checks us in. We're friends with the front desk ladies and they're always cheerful and glad to see us. After a few minutes the nurse comes back to get us, and we head to the back of the office. I weigh in at 92.5, which is a 1.5 lb gain! For the win! We all cheer, and then take my blood pressure and pulse. It's low as normal, so it's time to take my blood. I love having a port since it makes for easy access to draw blood and take in the chemo. Buuuuut, the worst part is that every time we use it we have to flush it with saline in order to keep it clean and sterile. This is the worst, because every time we flush it (at the beginning, middle and end of chemo) I get a strong, nasty chemical taste in my mouth. Just thinking about it makes me nauseous and gag. I chew a stick of gum when they do the saline flush to help with the taste. Mostly it just makes me associate gum and mint flavors with saline, but oh well.

12:15 pm
We chat with our doctor about how I'm feeling and my side effects before starting chemo. The past few weeks I hardly been nauseous, I've had more energy than I've had in months, and really I've been feeling good. The only weird side effect that I've been dealing with are hot flashes. Our doctor's best guess is that my ovaries are pretty stressed out (extreme weight loss and chemo chemicals have killed my period since September) and that could be giving me hot flashes. An early menopause is possible, but unlikely. Definitely hoping for the best right now.

12:28 pm
Before the nurses come over to start my chemo, we chat with a lady sitting across from me. She's here for breast cancer and is just a few rounds of chemo in. She's got 10 more. We cheer for her, and give her encouragement. I think breast cancer is what most other people are being treated for, at least when I'm there. We have yet to meet anyone younger than us, but that might be because anyone younger would go to the children's hospital in Salt Lake... Anyway, I get hooked up to my chemo bags, and hop on my laptop. Derek has a work meeting on campus so he kisses me goodbye. I breeze through facebook, watch an episode of Parks and Rec (surefire way to cheer up) and then start writing this post. Derek is back an hour and a half later, he studies for his upcoming test while I keep writing.

2:44 pm
And chemo is over! "Sarah, just three more times and we are done." I tear up and cry a little bit. Today was 9 out of 12. That light at the end of the tunnel is a little closer, and I can't believe it!

I chew gum for the final flush, but can't stop shuddering. Such a nasty taste! I try to focus on the food we are going to eat to distract myself. We place an order for pick-up at Cubby's and walk back to the car. I forgot to take a picture, so we take it in the parking lot (I usually forget to take pictures...). My sister Ishel has sent me some videos of her and the babies she nannies. They are adorable and definitely brighten things up. Then to Cubby's for delicious burgers. We've successfully reintroduced gluten back into my diet, so when we get home I eat my first burger with a bun since October. It was delicious.

3:20 pm
I use the bathroom, and my pee is red. One of the chemo drugs is bright red, and makes my pee red for a day (it's normal). I take a pill for nausea, but my body is tired. I have a minute-breakdown, and Derek holds me. It's okay. Really, it's going to be okay. We watch two episodes of Jimmy Fallon to distract and cheer me up. I have a glass of orange juice to help get the saline taste out of my mouth.

4:38 pm
Bedtime. But not quite sleep time. Derek kisses me before leaving to take a test, and I watch 9 to 5 for the first time (wacky, but good) and then Legally Blonde. Normally I like watching cooking shows, but not right after chemo. Too nauseous. I eat an orange juice popsicle, and watch another episode of Parks and Rec. Leslie and Ben are "on trial" for their relationship, and it's pretty funny.

8:30 or 9:00 pm
It's dark, and I'm exhausted. I fall asleep pretty quickly and don't even wake up when Derek gets home. But I do wake up in the middle of the night, sweaty, a little nauseous, and needing to use the bathroom. Late night/early morning bathroom breaks are a regular nightly occurrence. I sleep all the way through the night maybe once a month.

How I fight cancer

What the heck does it mean to "fight cancer"?

Before I was diagnosed I had only a few experiences with cancer. My mom's parents both fought and passed away from cancer while living with my family in my late teens. Growing up I had heard stories of how my mom's brother also fought Hodgkin's lymphoma when he was my same age and in college (he survived and is still kickin'!). But I didn't really know what cancer was or what it meant to "fight" it.

Until now! There are so many different types of cancers and chemotherapies and treatments, so I can only speak for myself. But if you're interested, here's how I fight:

I fight by going in for chemotherapy.

Going to chemo isn't my favorite. It tastes gross, it makes me feel crummy, and I have to get poked with a needle. But I know that it is helping me heal and get better, so I choose to go (and try to have a good attitude about it).

I fight nausea.
This is the biggest side effect of chemotherapy. Feeling nauseated is the worst. I take that back. Actually throwing up is the worst. I have pills that help enormously, as well as smelling citrus or distracting myself with Netflix.  

I fight constipation and diarrhea.
Another foe that is not pretty, but real. It has taken four months, but we have finally re-figured out my bowels and how to keep them functioning well. But with that said, it took us four crappy months.

I fight all sorts of weird side effects.
My teeth are super sensitive now for several days (it feels like I'm teething). I've had a fever for a week (and I'm taking antibiotics to help, don't worry too much). I get a metallic taste in my mouth pretty often. My skin is acting weird and dries out in strange ways. Night sweats baby. My hormones are loco-crazy. Ya.

I fight my body.
My body is a battlefield right now. Chemo drugs as well as some of my cells are kicking those cancer cells trash. Every. Single. Day. Plus I've still got ulcers in my colon and my body is freaks out about that sometimes. I'm underweight, so I have no fat storage so my body is constantly in starvation-freak-out mode. Sleeping isn't always easy, and I really, really need sleep. In short, things are pretty dang whacked out right now. Which is why...

I fight to love my body.
My body is so far from functioning normally right now. And that is frustrating. Walking 300 feet to the mailbox is a huge feat. Trying to read a book or learn new things is sometimes challenging. Staying awake past 10 pm is almost impossible. Using the bathroom takes an enormous amount of energy. Being bony and thin is very uncomfortable. Things I used to love to do, like cooking and running are impossible for me to do right now. But even though there is so much my body can't do, I choose to love my body. I'm healing. I'm fighting. And I still can do lots of things! My body isn't very strong right now, but I have a body, and I love my body, and I know that someday I will have a functional, strong body. 

I fight boredom.
Now, I do sleep quite a lot (I would say that's the main activity I engage in) but I still have plenty of time on hand during my waking hours. I choose to read books and blogs and scriptures and magazines, paint, listen to audio-books, watch episodes of The French Chef with Julia Child, watch Netflix (favorites include Parks and Recreation, The Mind of a Chef, Cutthroat Kitchen, The Unbreakable Kimmy Schmidt, and Audrey Hepburn films), check email and Facebook, reply to messages, write on this blog, visit with friends who stop by or via Skype, look at Instagram, take baths, take naps, meditate, walk to check the mailbox (that's my one chore), water our plants (mostly neglect), paint my nails occasionally, and make sure I'm eating and drinking. And steal kisses and receive foot massages from my lovely husband when he's around. I'm not bored often, but it happens.

I fight to stay positive.
This is the ever present battle. Every day I have a choice as to how I want to look at this experience. And most days I choose to see it as a positive opportunity. There is so much that I'm learning from this experience, and there are so so SO many blessings that have come into our lives. I still have moments that are really hard, where I want my old body, and a "normal" life. I get frustrated with my inability to do a lot of things. I even miss things like work and school. But I guess my motto that gets me through has kind of turned into: this is not for forever, and look at how much good there is! 

And that's how I fight cancer.

Community

The Rex Lee Run was just over a week ago. And it was pretty cool.

As a way to raise awareness of the run, the College of Physical and Mathematical Sciences at BYU interviewed people who were running with a purpose. This college uses all proceeds from the race to fund cancer research at BYU. They managed to find Derek and got our story (that's the video just below this paragraph). They also interviewed Derek in more depth, which you can read here. (Warning: it probably will make you cry. Derek gets pretty real about how he has had to deal with cancer. Also, the same article was also published in the local newspaper here.)

I was genuinely surprised at how much the race affected me. There were almost two thousand runners who showed up on a Saturday to run/jog/speed walk/walk/push a stroller either 5K or 10K (which is double the participants from last year!) and $55,000 was raised for cancer research. That. Is. Amazing. Just check this out:

So many people! And a lot of those people ran for ME! I had immediate family, extended family, and a handful of friends who raced for me (even my dad's childhood best friend showed up, and got 6th place!). And a lot of them wore purple, which is the color for lymphoma cancers (each type of cancer gets it's own color. Yeah, I didn't know that either till I got the disease). 

As I sat in the stands wrapped in warm blankets, surrounded by my mom and sisters cheering the runners on, I got a little reflective. There were so many people who cared. Most of them didn't know me, but they knew someone who fought/is fighting cancer. And that's no joke. That's life. While I do have some feelings about cancer being put on a pedestal (a blog post on that to come), this event was so positive and happy and made me so glad to be a part of this community. Yeah, community. The Rex Lee Run was a beautiful celebration of community, and I was a part of that. My battle was honored by friends and neighbors, and I was cheered on by thousands of thumping sneakers.

I think all of this is best summed up by Phil Hermanek, a cancer survivor that CPMS also interviewed. Quite simply:

“We’re not as separate as we might like to think.”

More about the hair

Sooo, I shaved my head. And it's been pretty great so far. But let me back up.

The doctor said that my hair would start falling out after about 2–3 weeks. OK cool. About 2.5 weeks in I noticed that every time I touched my head, a single hair would fall out. I was finding and removing hairs from my laptop keyboard more and more often. This was enough to signal to me that it was time.

My dear friends Maude and Emma hopped over and helped document this once-in-a-lifetime moment, which was pretty cool. I mean, when in your life does the husband get to shave his wife's head?

We planned out how we wanted to make the gifs (check out the ones Emma made here), and then started shaving! Periodically we stopped the clippers to take photos. So fun. I got to try a bunch of sweet hairstyles as we chop-chopped our way down.

Things are significantly more chilly without a head full of hair, but that's what hats are for. And I'm covered (pun) in that department.

While some of my hair follicles are closing up because of chemo (that's what causes the hair loss), not all of them are kind enough to close up shop. I still have to shave my legs and armpits, although my pubic hair is falling out like crazy (sorry if that's TMI, but it was something that I wondered about before we started chemo). I still think it would be so awesome if chemo only affected your leg hairs...but maybe that's just too dreamy.

Shaving my head is probably the thing I got asked about the most when I would tell someone I had cancer. "Are you worried/anxious/fearful that shaving your head will be hard/scary/make you not feel or look pretty?" And for a lot of men and women this can be a pretty traumatic event. But my friends and husband were so supportive! We made it into a fun event (photoshoot = always fun), and I know that I'm not gonna have a shaved head for the rest of my life. Hair grows back. My body will heal. This is not forever.