Tired

The two big side effects I was told to watch for with this chemo were nausea and fatigue.

I'm still fortunate in that I haven't had any nausea, thank goodness. But last week, I starting to have fatigue. I had multiple nights where I was just dead tired by 7:30 or 8:00. And a couple other times where after going and going for a while, I just absolutely crashed and burned on the couch.

I have to say, this is a new sort of "tired" that I haven't felt before. I could get run down just like the next person, and it's always been even more important for me to get my rest and get sleep with my CF. But this is different. I had one moment where I literally did not feel like I could do one more thing that day, like my batteries were completely out of juice and I didn't have even an ounce of energy left. Even changing clothes (which was what I wanted to do, change into some comfy lounge clothes) felt like a chore.

It's hard, because it makes my evenings seem so short. I enjoyed being able to spend time with Jarrod or do whatever I'd like until about 9:30ish, when I would then go do my breathing treatment and start getting ready for bed. But I'm not sure how much I'll be able to keep doing that. And I can pretty much forget about staying up late enough to watch Colbert, that's not gonna happen.

With all of this, I can tell I get run down more easily. I was working on a craft project yesterday, then started feeling tired, so I stopped. I had to stop, honestly, because it involved cutting things and I didn't want to hurt myself accidentally. 

It's getting harder and harder to keep up with things around here. In addition to being tired, I have pain that comes and goes. It's so unpredictable, and that's been very frustrating. It's not always in the same spot, I never know day to day, hour to hour if it will stay the same, get better, get worse. I never know.

Next Monday I have my scan at Siteman, and I am looking for someone to take me. With how tired I am, I don't think it's wise for me to drive myself to St. Louis for this. So please text me if you'd be able to. It's at 1:45, so we'd have to leave here a bit before 1:00.

And now, for some good CF news

This afternoon, I got home from running errands and opened up Facebook. The post I was greeted with is, honestly, possibly life-changing.

Last week, Vertex Pharmaceuticals announced data from Phase 3 clinical trials for the triple combination CFTR modulators is expected to be reported in late 2018 and early 2019. Based on the results, a new drug application is expected to be submitted to the U.S. Food and Drug Administration for review for people with one F508del mutation and one minimal function mutation by mid-2019.

We anticipate every person with at least one F508del mutation – regardless of their second mutation – to benefit from the triple combination modulator.

I couldn't believe my eyes.

Up until this point, I have not had the right combination of gene mutations to qualify for the CFTR modulators Vertex has created. Until now.

Yes, my friends and family, this post is talking about ME! I have one copy of f508delta—the most common CF mutation—and one mutation that is considered a "nonsense mutation." And when I pulled up the list of mutations Vertex included for this, there it was: mine. Staring right at me. I'm on the list.

I hadn't even clicked to read the article, I just went off of the last paragraph in there saying "regardless of their second mutation", but I called Jarrod as soon as that bit of text above had sunk in. I read it to him verbatim, and started crying as I did. (I let him know ahead of time I had news that was GOOD, so he wouldn't be worried something was wrong.) And I think I continued to shed tears for the next hour.

Oh wow. Now September 11 can be associated with something good (for me), it was the day I found out that the drug, the one I've been waiting for, the big one, the one that could really change the game for me, is showing promise!

There's still another year of hoops and whatnot (not to mention, finishing the Phase 3 trial) for them to get through before this drug is actually available and to patients, but it's so amazing to hear that it's on its way. I knew this trial was going on, but originally I didn't think it was for me. I thought that another drug aimed at nonsense mutations (with approval possibly another 5ish years away) was what I was waiting for. So this is amazing.

I feel like I have yet another reason to fight, to kick this cancer and get better. I start round 2 of chemo on Thursday, let's do this!

Link to article about all this here.

Fall Preview

Who else is excited for the cooler temps we have right now? I know I am. I know it will warm back up, but this is like a mini preview of fall. Saturday when we were in Kansas City, we were both a little chilly when we left supper. I wished I had brought a long-sleeve shirt with me, but I didn't.

This morning was so nice. I left the deck door cracked open overnight, so the house (the kitchen area, at least) was cooled off. Jarrod made a pot of coffee, and then later this morning I treated myself to some tea. And I had an idea... I should take some tea with me to chemo. Surely they have hot water there, and then I can make myself a nice cup of tea :).

Earlier this year, when it was cooler weather, almost every night Jarrod and I would wind down with either some hot tea or some decaf. I'm really looking forward to that again.

At the candle shop I wrote about, we picked up some fall scents, so I am stocked up and ready!

KC Getaway

This weekend Jarrod and I took a last-minute trip to Kansas City! We decided we would go on Wednesday, and put together some plans and booked a hotel.

We went out for a nice dinner on Friday, when we took this picture. We were all dressed up, and it was Jarrod's first time wearing a bow tie! We had reservations at a place called JJ's, which was really great. We both started with a cup of delicious soup (tomato basil for me, onion for Jarrod) and had steaks and potatoes for dinner.

Saturday morning we stopped by a candle shop I wanted to check out. Candles?! What?! I can't burn candles, but I do have a candle warmer and sometimes use wax melts at home. It was an adorable shop, and I took notes of scents we liked in case I ever wanted to order online. Right now I just put on "I'm the Boss, Applesauce" which is a nice, spicy apple blend. We went shopping at the Country Club Plaza, which for those that don't live here is a really neat historic shopping and dining area. Unfortunately, it was raining lightly and it wasn't all that enjoyable, so that got cut short a bit. But it was fine, really. I found a new vest and Jarrod got some gourmet food stuffs from this amazing cheese shop called The Better Cheddar. And I just had to go in a dog bakery, where I found Josie a "Woofie Pie" (doggy version of the Woopie Pie, haha!) I also got her a "Pupkin Spice Latte" cup full of treats. To say this place was adorable and full of wonderful dog puns is an understatement.

During the afternoon we went to the National WWI Museum, which we both really enjoyed. We both learned a lot, not really knowing a whole lot about WWI in general. The biggest takeaway we had was realizing that the whole war started in one week, and it all began because of a misunderstanding. I would recommend it, especially if you're a history buff.

After all of that walking around, I admit I was exhausted. Dinner was at this quaint, little Italian cafe nearby, and what a gem it was. Our waiter was Italian, which was obvious as soon as I asked what kind of sodas they had, and he said "San Pellegrino" so fast I had to stop and figure out what he said. The food was great!

This morning we got up and went to the art museum, which is a really nice museum. The building itself might be even nicer than the St. Louis building, though I think I like the St. Louis collection better. But there were still lots of great pieces and I enjoyed it. There was this one chair that I keep remembering... It was made of black and white puzzle pieces that were 3D printed, and it listed where you could download the plans to make one yourself. Which I think begs the question: If it can be mass-produced, is it still art? Which is exactly the kind of ideas that Andy Warhol was toying with with his screen-printing art. I guess the answer is yes, but the question still remains.

After that we grabbed lunch and headed home. It's kind of funny, because all of the restaurants I had planned for us to go to, we didn't go to them for one reason or another. But we ended up at the perfect lunch spot and ended our trip with these little dessert shots: puddings and mousse and cake served in a shot glass. Perfectly sized for one! Jarrod had a chocolate one, I had a hazelnut one and we both agreed, mine was better lol.

It was a really great weekend and I'm so glad we went!

Friday Fast 5

Time for this week's Fast 5!

1. I'm sure many of you have wondered how I'm doing. Answer: I'm doing pretty good most days. Still no nausea, so that's wonderful, and my weight is ever so slightly up (yay!), which as you know is a huge deal with my CF, let alone this cancer crap. However I've had some pain come and go, and ended up in the ER last Saturday because it was so bad. I called my cancer doc and he wanted me to go in to make sure nothing serious was going on. It wasn't serious, but basically this might be something that pops up from time to time. It's been slowly better and better each day since then.
2. I don't think it's going to rain that much this weekend. I feel like the weathermen are trying to save face at this point, going on about how it's still going to rain so much. Because when they play out their models, it's not like there is a large blanket of rain over the area. It just doesn't make sense to me that it's going to be the buckets of rain they said. It was supposed to start raining overnight, and it's still not raining. So... yeah.
3. This is my first 'off week' of chemo! Next week, back at it again on Thursday.
4. I recently posted my doilies on Facebook and sold all four I had made so far. I hope everyone enjoys them :). And sounds like some more people are interested. I have one in progress right now. It's red actually, for fall or Christmas. I think it's going to turn out really nice in this color! If you are interested in one of my future ones, shoot me a text or email.
5. Many people have wondered where I learned how to crochet these. I am self-taught. My grandma taught me how to crochet when I was in eighth grade, but as far as making these doilies, I taught myself. Up until last year or so, I had told myself that I didn't know how to read crochet patterns. Then, I started to give it a try. I started with easier yarn patterns for blankets or dog sweaters, and it wasn't nearly as bad as I thought it was (proof that most times, when we 'think' we can't do something, it's really just in our head and we are the ones in the way.) And from there I thought Hmph, I wonder if I could make a doily? and gave it a shot. And I picked a really complex pattern as my first one, haha. But then it turned out great! There is just one small error in it, maybe you can spot it. But I really, really enjoyed it! I honestly didn't expect to have that much fun with it. I've described it as a small sculpture that reveals itself slowly, row by row. I love making them. I use my grandma's old crochet hook, and think of her often when I'm making them. I hope she's smiling down :).

   

   My first doily!

Friday Fast 5

For those new to my blog, sometimes I do my "Friday Fast 5" which are five quick things, usually unrelated, that have been in my mind or happened this week.

1. I had my second chemo treatment yesterday, and still feeling pretty good. I am feeling tired and drained, though, which could be partly due to me not getting much sleep the past couple nights. But thankfully still no nausea! Or really any other major side effects. I am so thankful.
2. I got to see an old friend at the cancer center Thursday, actually. She was in the waiting room for something when I was in there too. It was so great to talk with her and catch up a little, and even though I was wearing my mask—something I always do if I'm in a health care facility due to my CF—I hope she could tell how much I smiling and happy to see her. 
3. Josie turned 6 on Monday, and I can't believe we've had her for six years already! I got her some awesome toys from Bark Shop, so she got a piece of cake, a piñata, and some balloons. She also got special dinner, which is the Grammy's Pot Pie canned dog food by Merrick. Is she not the cutest? Sitting there with her presents and a meek little smile on her face. :)
4. I'm running Rosie the Roomba right now, and she is clearly lost. It looks like she's trying to find her home base, but it's not going very well. She's been spinning in circles for like 5 minutes now. 
5. Some lady flipped me off the other day in the Jimmy John's parking lot. I have no idea why. Really, neither of us was in each other's way, we weren't speeding, I was 'technically' going the wrong way (since, at the Washington one, you're technically supposed to follow the arrows around the building to leave, but it was an off time so I just went the way I entered the low), but that's about it. What a sad existence... to get so upset by such a minor thing that you resort to flipping them off. I understand the use of the finger in certain cases, but this was not one of them.

First one done!

Chemo today went just fine. Fortunately, I can receive treatment here in town and don't have to go far—the cancer center is like 5 minutes from our house. Chemo is chemo: the meds are going to be the same no matter where you go, and they'll be run pretty much the same way, so there's no reason to drive far away for the same thing.

My chemo cycle will be two weeks on, one week off. So for one day a week (currently Thursday, though I might switch it to Tuesday if needed) I get treatment, then I have one week off. I am getting two meds while I'm there, plus a bunch of pre-medications and fluids.

Jarrod came with me today, but I want him to save his other vacation days for fun-er things than sitting around doing chemo :). Originally we were told we would be there until 4pm... a LONG day, to say the least, considering we were starting at 8:30. But once we got there, we were told it was more like 1-2pm, so yay for that! We were back home by 1:30 today.

Everything went fine. Honestly, it was like any other time I've had IV meds at the hospital. In this case, it's a lot of sitting around. But at least they have recliners and blankets and try to make it as comfortable and bearable as possible. There was a nice volunteer lady who just walked around checking on everyone; that's it, that's all she had to do. She was very sweet.

My nurse was Sue, and it's kind of special that she got to be my nurse. She's been my nurse friend for 16 years. Originally, when I got my port 16 years ago, we had to find a cancer center so I could get it flushed regularly while it wasn't in use. Anyways, she was my nurse at this small cancer center in town. Then 5-6 years ago, they merged that one with this larger one at Mercy, and now she's there. I've been going there for my port flushes, and I thought it was special she got to be my nurse today. Maybe she requested that, I don't know. But she's really great and gave me a big hug yesterday when I went in for my labs. She always asks how mom is, since she got to know us all those years ago, and Jarrod got to meet her today too.

It's about 5:30 right now, and believe it or not: I feel fine. Aside from being tired (I didn't sleep well last night) you'd never know that I got my first chemo treatment earlier today.

However, we were told that side effects are typically delayed a little, and will probably show up—if they do—in 2-3 days. So we'll see. Nausea is a big concern with one of my medicines. Fatigue is a concern for the other med. There are a lot of great anti-nausea meds now, but unfortunately there's not much to do about fatigue. They said that should start showing in about a week, and I just need to rest, give myself extra time, take things slow, but to try to keep doing my daily activities. Basically, the more you keep moving, the less the fatigue will get you down. There is a long list of other side effects I won't bother to go into, but those are the two most likely.

As with all cancer patients, there is concern for low white blood cells. If you have a low white count, that makes you much more prone to infection. For the most part, I feel like I have this one in the bag. I've already talked in depth about my hand washing and not-touching-my-face practices, so I'm already on a good foot there. We are also already hyper aware of sick people. If Jarrod or I hear a person cough in public, or someone who has the sniffles, we take note and we avoid them asap. I avoid crowds more as we head into the colder months, I have no problem wearing a mask if I feel I need to, and I've pretty much stopped shaking hands during peace at church. I just give a friendly smile and flash a wave which easily lets people know: I won't be shaking your hand, but "Peace be with you" all the same.

With that in mind, it is imperative anyone who comes over to visit washes their hands when they get here (Germ-X works too.) And also if they use the bathroom. Wash, wash, wash. Sing yourself happy birthday or the ABCs: that's how long you're supposed to "properly" wash your hands with soap. There may be other precautions as we continue along, but this is a good one (plus it's easy) to do for starts.

So yeah, we shall see what the next few days hold. As the nurse went over everything this morning, once again it impressed upon me that no one knows what side effects a person might deal with. Basically anything could happen.

Thank you to everyone who reached out to me this week. All of the little messages and small comments help me believe we can do this.

Today was the first step... onward!

Plan of attack

Alright everyone, we have a plan. I'm gonna keep this short, it's been a long day.

We did the liver biopsy a couple Fridays ago, and it pointed us in the same direction.

Today we met with Dr. Tan at Siteman to discuss clinical trials and treatment. They confirmed my diagnosis: stage IV intrahepatic cholangiocarcinoma. There were not any current clinical trials for first line treatment, so we will proceed with the standard plan of doing chemo. However, there was a second line trial that I signed up to be screened for. They will test my tumor tissue to see if there is this specific protein in it, and if so, I could sign up for that trial if I wanted to. If not, then it wouldn't apply to me. They also talked about numerous other options we may have for second line treatments.

I've learned that there are "first line" and "second line" treatments in the world of cancer. First line are the things you try first, second line is what you try after that when you need to. So there's that, if you were wondering what all that meant.

So... I start chemo on Thursday. It's about time. This has felt like a very long, slow slog to get to this point of FINALLY doing something about this. Please continue to pray; pray that the chemo works, pray that the side effects aren't too bad.

Art heals

Holy cats, Batman, two blog posts in two days? That never happens!

I've recently posted a couple songs on my Facebook that have really resonated with me and given me hope. And peace. And good cries.

The first one was Simon and Garfunkel's "Bridge Over Troubled Water." If you haven't listened to it in a while, give it a go. The lyrics are so well done, and you'll probably get why this song came up. It's such a beautiful song, and I can't think of a song like it produced in recent memory. The crescendo to the final verse is so good.



The second song I mentioned the other day: of King & Country's song "It's Not Over Yet." After my PET scan, as I drove over to UPS, I decided to switch to JoyFM, the Christian radio station here. I'm not the biggest fan of Christian music, but I felt compelled to listen for some reason and this song was on. As I started to pay attention to the song, I realized these lyrics were really hitting me... almost like they were meant for me... I think this might have just been a little "God moment."



Like lots of people, I've always connected with certain songs for a multitude of reasons. Music can be a powerful motivator, mood settler, friend, or simply something to enjoy. Jarrod and I frequently sit downstairs in our home theater and listen to music, filling the room with sound. (And don't even get me started on classical music; talk about some awesome songs there! If you ever need suggestions, let me know. I also made an excellent, if I do say so myself, Spotify playlist of film scores.)

Since I'm such a visual person, I've also pulled up a lot of images in my mind, mostly from movies, about all this. I feel like I'm preparing for a big battle. And it makes me think of things like this:

I also think of the Lord of the Rings, when Gandalf and Pippin are at Minas Tirith, looking in the distance towards where the enemy is preparing. "It's so quiet," Pippin says. "It's the deep breath before the plunge," replies Gandalf. "I don't want to be in a battle... but waiting on the edge of one I know I can't escape is even worse." says Pippin. Or something like that. Anyways, it feels kind of like that too.

See, this is why I love art so much. Art creates emotions, feeling, and a deeper understanding of our world. And sometimes it helps explain things that are harder to put into words, since emotions can be difficult to describe. Anyone got any other movie scenes that come to mind?

Back to the liver

It's been so difficult, I'm not going to pretend it hasn't been. Thank you to anyone who's helped out or sent food, a card, a quick message, or a text. I realize I'm not getting back to everyone, but sometimes it's just really tough; I hope you understand and please don't be upset.

By now most of you know the results of my original biopsy: cancer. I want to update you all on where we are at today, but I'll keep it short because it's still hard to talk about.

All the way back on July 17, the day our lives forever changed, we got the news. My biopsy from my abdomen suggested adenocarcinoma of the ovary, so we were whisked off to a gynocologic oncologist—which is a mouthful. He did an exam, took a biopsy from the endometrium, and I came back the next day for exploratory surgery to find out where this cancer is coming from, what is the primary source. That all went well, and I was back home that night.

Last week, on Tuesday, we finally got the results back from the things he biopsied from that. The biopsy from my endometrium came back negative (benign)—so that's good—but the rest of it was a mixed bag. My tubes were negative, other endometrial tissue was negative, but the right ovary had a few cancer cells on the surface, and another area did too. These were suggestive for hepatobiliary or breast cancer.

Breast cancer is very unlikely at this point; nothing on any of my scans has shown anything going on in the breasts. But, all of the scans have shown the mass in my liver. Most likely we are dealing with intrahepatic cholangiocarcinoma, which is basically what all of my imaging (the CT, the MRI, and the PET) have been pointing to. So back to the liver we go.

To break down that medical term: "intra-" meaning "inside", "hepatic-" meaning liver, "cholangiocarcinoma" meaning "bile duct cancer." So basically, this is likely a cancer that started inside the bile ducts inside my liver.

But to confirm this, we have one final hurdle, which is a liver biopsy. And that's where we're at: trying to get me set up with a liver guru to get this done asap. My doctor also referred me to Siteman Cancer Center at Wash U to see if they have any clinical trials that might apply to me.

If there are no clinical trials for me, and as soon as we get the biopsy results, we will start chemo. It sounds like it might be rough, but really what I've learned is that chemo is kind of unpredictable and affects everyone differently. Some people sail right through it, others have more side effects. No one knows until they try.

Yesterday was a really tough day, though. My doctor's appointment brought back up so many emotions and it was a day full of tears.

Daily, sometimes hourly, I waver between being terrified and then having faith that God will continue to take care of me.

So please keep those prayers going. Pray we can make this go away. I don't know if it's possible, but in times when I'm feeling hopeful I keep remembering how I've defied the odds before. By all intents and purposes, I shouldn't be here right now. When I was born, I wasn't supposed to live much past 18 years old. And 5 years ago, when my lung function dropped so much, conventional medical wisdom would tell you my lungs should have kept going downhill and I would have had a transplant within 1-2 years. But that didn't happen. Not even close. My former doctor, Dr. Kouba, once told me I was "an odd bird" in how much I've been able to keep going like I have. My only hope is that the chemo will work and I can keep on being odd. :)