Saturday, September 27, 2014

You'll never guess

So you may have read that last post and wondered "Wait, that was only 5 doctors appointments..."

The sixth doctor's appointment was for Derek! He has been feeling under the weather lately, tired all the time, and has a sore throat. He went to the doctor, got swabbed, blood taken, and turns out that he has mono! So we are both major sickies!

Hopefully this will pass in the next few weeks, but in the meantime, we are both sick and tired. So we will be spending quite a bit of quality time together sleeping.

I will note that when Derek got home from the doctor and told me we both laughed and laughed. The absurdity of the whole situation is just hilarious. I think it's safe to say that after 4 months, we have had a pretty extreme marriage.

Stage 2!

Okay this week is finally over! After 6 doctors appointments/surgeries/tests in 4 days, Derek and I are very, very glad that this week has finally ended.

Tuesday I had my first ultrasound. Woo! Not exactly the regular circumstances for an ultrasound, because it was actually to check out my heart, not my belly (also, there is nothing going on in my belly, if you were wondering. No way José). I got an echocardiogram, which is the fancy name for heart ultrasound. Very cool.

Wednesday was my PET/CT scan, which was also very cool and somewhat intense. I had to fast beforehand, and this—in addition to it being that time of month—made me pretty weak by the time I got to the hospital. I had to give blood via finger prick, which I got very lightheaded for and actually had to be pricked twice because not enough blood was coming out. Following that mildly unpleasant scenario, I was shuffled to a little room where they then hooked me up to a mini-IV thing, but when they pricked my left arm, I once again almost passed out and my vein closed up. So into the other arm we go!

After the IV was in, they plugged in the radioactive liquid-sugar stuff for a minute or two, and then I got to go take a nap for 90 minutes and drink raspberry lemonade with contrast (it helps your intestines and stomach show up in the scans by dyeing your intestinal lining) which is not very delicious. It tasted like sticky-sweet kid medicine. After napping with some heating pads and a papery pillow, I was awakened, and beckoned into the room with the MRI machine. For the 30 minute scan I pretty much sang Only Time by Enya over and over to keep myself distracted. During the scan itself I'm not really sure if I felt anything (like radioactive sugars dancing in my body while magnets whirled around me...) because I was already crampy, so that's how it "felt" for me.

Thursday was the bone marrow biopsy, which I had been dreading all week. From other cancer blogs, most started off the bone marrow biopsy post with things like "After the most painful surgery..." or " was unexpectedly painful..." (I didn't have the courage to read through any of the posts), so needless to say I was not looking forward to it. I did opt to be sedated, which meant yet another IV, but that's fine. I did not want to deal with a fatty needle digging into the back of my hip and sucking out bone marrow. Egh. Still gives me the creeps. Long story short, it wasn't that bad. It was a very fast surgery, my right hip has just been achy, sore and tender, and I've been limping and mosting reclining since then.

Friday Derek and I met up with our hematologist again (cancer doctor). We reviewed all of the tests, and were able to diagnose me as having (drumroll please):
Classical Hodgkin's lymphoma, Stage 2, unfavorable, non-bulky, type A. 

Yay! Stage 2 is a good place to be. The cancer hasn't spread below my diaphragm. Rather, it is growing in a lot of sites in my neck, chest, and armpits (which is "unfavorable"), but none of those sites are larger than 10 cm ("non-bulky"). And I'm a loose type A because I'm not having a ton of side effects. Type B would mean I am experiencing side effects of unexplained weight loss, night sweats, fevers and chills, but I'm only super strong on the weight loss (I have experienced the other symptoms, but not to an extreme degree).

Soooo, treatment for that is most likely going to be 6 months of ABVD chemotherapy. We are planning on starting at the end of October, because Derek and I requested that we meet with a nutritionist before we start chemo.

Also, I went in to visit a gastroenterologist this week because things have been pretty painful down there. The week after I had the biopsy on my neck I was taking narcotic meds to help ease the pain. Unfortunately, one of the side effects was severe constipation, and after a week it became excruciatingly painful to pass stools. So after that doctor's visit we decided that we will operate on the hemorrhoids to hopefully relieve the pain. That surgery is this Monday!

Sunday, September 21, 2014

Support Group

It's been one week since I was diagnosed with Hodgkin's lymphoma, and it has been crazy. Doctor's appointments, a sore neck from the biopsy, and everything in between. But I have felt so loved. Seriously.

One of the coolest things about getting cancer has been the overwhelming love I've received from SO MANY PEOPLE. Talk about a neato blessing. It feels like that scene at the end of It's a Wonderful Life where everyone comes in and shows Jimmy Stewart just how much they appreciate and love him. Yeah, multiply all of those warm fuzzies times 300 and that's what I feel like I've received. 

THANK YOU SO MUCH! All of the notes, and likes, and messages, and flowers, and e-mails, and cards, and gifts, and visits, and food have made a HUGE difference. Anytime I would start to feel down or depressed, I would just open up my email or facebook and there was an inbox full of support. YOU ALL ARE AMAZING. I can't even say how huge of an impact each message made.

One of the best ways you can keep supporting me is to keep in touch! I have a lot of time on my hands, and I don't like thinking about chemotherapy very much, so write me letters or emails! Reading about someone's life is distracting and helpful, and much more interesting than my what's going on in my life right now. And especially looking forward, things are just going to get harder, please keep sending love and messages!

So write me about anything! What are you doing? Do you have projects you're working on? How do you like your job? What was something cool that happened this week? What are you going to do for the weekend? And I'll write you back! 

(Facebook messages or e-mail are both great)

Up and coming

So here's the update:

On Wednesday, Derek and I met with our hematologist (similar to an oncologist) to walk through what's next. 

All of the tests up to this point were just to help us figure out if I actually have cancer. I have cancer. Check that little box... Now what? This next week we are going to be staging my cancer, which means we're gonna figure out how far the cancer has spread through my body. There are four stages: 

STAGE 1: Hodgkin's disease is found in one group or lymph nodes.
STAGE 2: two or more groups of lymph nodes are found either grouped all above or below the diaphragm
STAGE 3: disease has spread to lymph nodes both above and below the diaphragm, and possibly caught a single internal organ too (like the spleen). 
STAGE 4: all of the above, plus disease is found in other organs/regions that aren't close to your lymphatic system (like in your lungs, bone marrow, etc)

So next week I'm scheduled for a bone marrow biopsy (large needle to the back of my hip), an echocardiogram (ultrasound for the heart), and a PET scan, I think, which is similar to a CT scan. After all that jazz we'll meet with our hematologist again, and then knowing which stage it is, we can accurately decide what to do for treatment. Stages 1 and 2 usually get 4–6 months of chemotherapy, plus a little radiation therapy zinger at the end, while stages 3 and 4 are 6+ months of chemo.

That's the technical part of it all. The hard part is trying to swallow everything, I guess. Realizing that I have probably have 4–6 months of chemo ahead is hard. Just plain ol' hard hard. Chemotherapy is not fun, and the longer you do it, the weaker your body gets. Meh. I'm already feeling weak and tired all the time. I don't really want to amplify that. But I also really, really don't want to be sick like this for a long time. Perspective: if I live to be 100, six months is 0.5% of my whole life. That's not very long. 

It really feels like there's a light at the end of the tunnel. After all this sickness and crap, there's life. I'll be strong enough to run again. Healthy enough to grow my own hair and nails. My clothes will fit me. I'll have energy to cook, to clean, to study, to learn, and to do things.
So it's gonna be worth it. I just hope that time flies really fast for this next little bit. 

Tuesday, September 16, 2014



Today I took a long bath. I guess things just needed to soak in.

Some things have already sunk in. Like what if I don't make it. I've already thought about that a million times, and I've decided I don't want to take that route. But other things haven't really sunk in. Like, okay I really have cancer, and it's called nodular sclerosis Hodgkin's lymphoma. Try wrapping your head around that. Over the weekend I guess I was hoping that there was going to be a mistake, and that I didn't actually have cancer, but that I just had a virus or something. But that slim chance is gone. The doctor called at 8:53 am Monday morning with the results.

Anyway, as I soaked in the bathtub today I wondered if I would be able to have kids someday. I asked God, but he didn't tell me. Because from what I've read, sometimes after chemo or radiation therapy you can't have kids.

It's funny. I never thought something like this would happen. Things that you kind of just expect to happen—like having kids—are all of a sudden jeopardized. I definitely didn't think that I would get married and then after four months have to fight to stay alive. I thought we'd be figuring out how to live together, like, you make dinner on these nights, and I'll make dinner on the other nights. Instead, it's like, can you make it to this doctor's appointment with the hematologist?

It's kind of a weird way to start our little married life. Unexpected, for sure. But I know that God has a plan. I don't know why I'm supposed to have cancer, and I'm not asking. All I can do is trust him.

And sleep a lot.

And be with people who love me. Ishel came over this afternoon and we just had a good sister cry. We ate dill pickles (which are oddly comforting. Probably because they taste like our childhood) and chips with guacamole for dinner. Derek got home from school not long after that and was stalwart and comforting as ever. It's okay that this is the new reality, because I have so many people who love me.

Operation day


After surgery, we kept busy for a little bit. We ate at Cubby's with Derek's parents (that tri-tip salad is so good), and then returned home after eating. I had to set up some follow up appointments, and Derek had class, so we split, and when he got back I was restless so we walked up to the Provo Temple. After the operation, the surgeon had told Derek that it looked like my lymph nodes were cancerous. So we talked about cancer a little bit, but it still seemed a little surreal. Like, how do we tell people? And when? What's cancer going to be like? And we didn't really have answers to those questions. So we went home and watched the BYU football game on my laptop while eating stroganoff (thank you Mom Mary Miller!) and drinking elderflower drink (thank you Ikea).

It wasn't until I finally started to feel tired around 11 pm that we let ourselves really think. It took us a while to figure out how I was going to sleep, since my neck muscles were just really sore from the excision, but three pillows did the trick. I guess it was when it was finally dark and quiet that my brain really started to process what was going on. Cancer is scary. There are so many unknowns. But I think it's gonna be hard. And really uncomfortable. I might lose my hair. And throw up a lot. And not be able to sleep well. There are gonna be lots of pokings and prickings and hospital visits. And that's not exactly very fun.

But, lying next to me is a pretty dang incredible man, who loves me with all his heart. For whatever reason, I have this sickness right now. And it's pretty good timing. I am so grateful that I am married to this man who is here to support me, mop up gallons of tears and fluff my pillows when I can't move my right shoulder. I love him, and know that God has a plan for us.


Sooo, here's a life recap of the past year:

My study abroad to Sweden last summer was wonderful. I had a blast in Europe, and really hope that I get a chance to go back. Confession: my blogging here started to lag quite a bit because I was sending emails to this boy that I liked. He was funny, charming, and a steady correspondent. A week after I got back to Provo, UT we held hands, kissed, and started dating all in one night. That fall semester while going to school, we both fell in love.

Fast forward to Christmas: with the help of his family, we surprise Derek and fly him to Virginia. He surprises me with a ring and proposal on the beach.

After another semester of school and work, we are married a week after finals. We honeymoon in St. George, and backpack into Havasupai.

A few weeks later we find ourselves in New York City (living a block and a half from the Metropolitan Museum of Art!), where I have a graphic design internship and Derek starts his own tutoring business.

After the summer ended, we came back here to Provo, Utah! We have an apartment that is four times as large as our New York studio, and half the price! Derek majoring in Applied and Computational Mathematics (he wants to be a data scientist) and is going to school full-time as well as working part-time. I'm taking the semester off: no school and no work, just lots of rest.