Disney Movies

Ok, confession time... Disney movies make me cry a lot.

Does anyone else get very emotional when you watch Disney movies these days? I do. Almost every Disney movie somehow makes me tear up. I don't know if it's part nostalgia, or just being an adult and thinking about the movies in broader, more adult contexts, but it happens often.

Examples:

• When Pocahontas gets everyone to stop fighting, and her father holds up his club that he was about to kill John Smith with, in a bid of peace... (I think the music kills it for me with this one)
• In the Fox and the Hound, when she drops the fox off in the game preserve, the truck ride over... (truthfully, this has pretty much ALWAYS made me cry)
• In Mary Poppins, when their father walks to the bank, knowing he will be fired for his job due to his children misbehaving, but he accepts it, and when he pauses to look at the steps of the cathedral, recalling how his children just wanted to feed the birds and he told them they were throwing their money away doing that...
• In The Little Mermaid... when she hugs her dad, King Triton, at the end, saying she loves him...
• When Simba ascends Pride Rock to take his place as king (again: music)... and also when Mufasa dies and Simba just wants him to wake up (but who doesn't tear up at that one?)
• When Andy leaves his toys behind with someone new in Toy Story 3
• The opening montage in Up
• When Belle tells the beast she loves him at the last second
• Honorable mention: The Wizard of Oz (not Disney, but mostly thought of as a 'kids' movie) Last time I watched it, I teared up multiple times.

I recently watched Mary Poppins, and had a few thoughts. 1, I really, really hope that parents still share this movie with their children. It's getting up there in how old it is, and I worry this one is going to be shoved off as an "old" boring movie, or simply forgotten about. But 2, it is such a magical film! I watched it and remembered how fascinated I used to be with everything Mary Poppins did. Sliding up and down the banisters? What kid didn't want to do that?! I realized it actually has a big message for adults, which is to never grow up too much, never take life too seriously. That's the issue with the father, he becomes so focused in his job and his responsibilities, having order, and what is "right" that he loses interest in games, having fun with his children, or remembering what it is like to see the world through a child's eyes. By contrast, Mary and Bert both make a living and have adult responsibilities, but they are still very much in tune with their inner-child, finding plenty of time to enjoy life and have fun. Who knew that was such a deep movie? Anyways, if it's been a while since you watched this, please go check it out from your library. It is a gem!

And the other night, I again watched Inside Out, which I think has become my all-time favorite Pixar movie. It's just so darn creative and brilliant! And I don't use those terms lightly. (Spoiler warning! if you've never seen it...)

<spoilers>

Never have I ever seen a concept as complex as the brain and depression so creatively explained, and in a kids' movie, no less. Because essentially, that's what they illustrate: depression. As the girl slowly loses all of her key personality traits and feelings, and ends up feeling nothing, where she no longer even feels sadness, she is essentially falling deeper and deeper into depression.

</spoilers>

If you've never seen Inside Out, I highly recommend it. It's funny and brilliant, truly brilliant.

On the other hand, The Good Dinosaur has to be the absolute WORST Pixar movie of all time. I could not even believe it was a Pixar movie, it did not live up to their caliber AT ALL! The plot was fairly predictable, yet still didn't make much sense, and I didn't laugh once during the entire thing. And some parts were downright disturbing. I could tell the times when they were trying to be funny—and like, Oh, that was a joke, I was supposed to laugh there—but it was not entertaining or funny at all. Don't waste your time on that one.

I also just watched Coco finally, and it was... alright. I'd give it a 6/10 rating. It was just a little strange because it's essentially all about the Day of the Dead, and therefore death, and almost all of the characters are skeletons. I didn't think it was nearly as witty as other Pixars.

Elated

Things have been very up and down the past two weeks. But I'm not going to dwell on that because we finally got some good news today...

I had my scans yesterday and got the results today... they showed things were stable and/or slightly improved!!! There were slight size reductions in my main tumors, so that is so awesome. I was truly preparing myself for the opposite to be the case, but it is not so. We will keep going with the same chemo treatment and scan again in two months.

I'm trying to just bask in the good news, because it can never be taken for granted. I'd like to thank God, St. Padre Pio, St. Rita, St. Agnes, St. Peregrine, and St. Jude. And all of you for your continued prayers for me.

Ah! So happy!

Hello from Mercy

So I didn't end up getting chemo Wednesday. My blood counts were messed up again. I was anemic, low potassium, low magnesium, and creatinine levels were too high. They gave me a ton of fluids to try and flush my kidneys and had me come back to check again and get more fluids Friday.

But Friday my labs were even worse. More anemic and worse kidney function (creatinine.) The doctor said I needed to be in the hospital and we needed to figure this out

Went to the ER at Mercy here in town, did a CT scan, and found that both of my ureters were getting pinched off and therefore my kidneys were not draining like they should be. I was still peeing, but not enough, so things were getting backed up and not working properly, basically. So my kidneys were kinda enlarged. This would require a fairly simple procedure to place stents in both of them.

From the ER I went to the OR for the procedure. I was put under a light sedation, thank goodness we didn't have to go full blown anesthesia. The last thing I remember was telling the crew yes, it was finally making me sleepy and it sounded like a loud whoosh like it was pouring rain on a metal roof. In a half hour, they were done and I was moved into recovery. It was late in the day and I was the only patient.

After that they brought me to my room on the floor. After some time we started the other thing I needed: a blood transfusion. My red blood cells/hemoglobin has been too low and since this has been the case for a bit now, I guess it was time. I've never had one before and fortunately that went fine and there were no issues.

They're telling me I'll probably have to stay a couple days until my creatinine levels get back to normal. If they don't, then something else is up that needs to be diagnosed. But I think everyone is pretty confident the ureters were the problem, and that's been fixed now.

Man, I tell ya. What a day. What a whirlwind. I'll be hanging out here at little Mercy if anyone wants to come say hey. Just text me first.

Update: I got to come home this afternoon (Saturday)! My hemoglobin was on its way up and my creatinine was on its way down (from 7.1 to 8.6, and from 3.5 to 3.1 respectively.) Not drastic changes in the numbers yet, but the doctor said it takes a bit and doesn't happen overnight.

Things have been going ok

I figured I finally needed to update everyone.

I finished my CF tune-up last week, and thankfully had good news at my check-up for that. My PFTs were back to baseline! So it was a success and I'm doing much, much better breathing-wise. The tune-up itself was really hard this time, though. We had some set backs, plus I was really sick when I went in, worse than I've been in a really long time.

So I finished IV antibiotics last Monday, and on Wednesday we started back up with chemo.

I was extremely tired last week, I felt like my body had been through the ringer. The antibiotics I was on were strong ones and I know they did a number on my system, then jumping back into chemo did a different kind of number on my system. Believe it or not, the past couple days have been better than last week was.

Tomorrow I do chemo, which kinda stinks having to do right before Thanksgiving. But I'd rather do it tomorrow than on Friday.

My next scans are in a couple weeks and we'll get those results and meet with my specialist at Siteman on December 18th.

So that's the short summary. Other than that, not much to report. The snow was really nice, and it was great having nothing to do both days it snowed and I could stay home and just watch it fall.

Pause

It's been quite a day. I went in this morning to see the doctor prior to starting round 4 of chemo. But my blood counts are off, so I couldn't receive my chemo today.

In addition to that, I have been severely short of breath for about a week. It's gotten to be more than I can handle, simply walking anywhere leaves me gasping for air. It is wearing me out and I can't do much of anything. So with all that, I am in the hospital for a CF tune up. We will resume chemo once I'm done, but right now we have to pause for a bit and take care of my lungs. 

On top of all that, I am coming down with a cold, which is never good for me. Please pray for a successful tune up and that I can breathe well again soon. 

Good news, but not quite a touchdown

We went to Siteman today for my results from my first scans. And we have things to celebrate, because it was good news!

My scans showed an ever-so-slight increase in tumor size, 3-4mm, if that. I've been wanting to update so many of you today on how it went, but it isn't easy to explain in a couple sentences in a text.

So I know that maybe sounds weird, but the doctor said this was very good news, because it shows the cancer isn't progressing and growing rapidly. For an aggressive cancer, the increase we are seeing is debatable and really we don't have enough data to say for sure if it is larger from when we started treatment or not.

The scan we are using as a data point to compare to is from mid-July, a full 5-6 weeks prior to starting chemo. And it was an outside scan from Mizzou. So, with such a minimal increase of barely a few millimeters, it could be: A, either the scan was done a tad differently at the different location and measured differently and actually things are the same, or B, the tumor grew in those 5-6 weeks between the scan date and starting chemo, and now we're playing catch up, in a way, and shrinking it back down. It's hard to say.

He felt good about the path we're on, though, and since I'm tolerating the chemo so well and since I'm not showing worsening symptoms—another really good thing!—we will continue on with another two rounds of chemo and scan again. At that point, now that we have yesterday's scan, we will have a much better picture of what is going on. Plus they will have more blood work and levels to compare to regarding tumor markers and such that we didn't have today.

So, as I'm putting it: not quite a touchdown, but we got some points on the board.

Of course I wish I could tell you it shrank by half or something wildly crazy like that, but that was never really the expectation. The truth is that containing things and controlling the cancer is as much a win as shrinking. Shrinking is a bonus, honestly.

I didn't sleep a lot last night, but I was feeling good this morning heading into the appointment. I put on a new shirt, my new earrings, and new lipstick and was feeling pretty. After the good news, I really wanted Q'doba, so we got lunch, and then headed home where I promptly de-accessed my port, showered, and took a much-needed nap with Josie at my feet.

7 Reasons I'm Excited for Fall

Fall is upon us! Today marks the first day of fall.

Here are my top reasons I'm excited for fall. Alas, I realize some of these are still dreams at the moment because it's still a tad too warm, but it almost makes me smile day-dreaming about it:

1. Making Soup — I'm not much of a chili person (yet, maybe someday I will be) so for me, vegetable soup is the way to go. When we were newly married, having never had to buy stew meat before, I accidentally bought veal stew meat. I came home, Jarrod pointed it out, to which I said "So THAT'S why it cost so much! I was wondering..." I completely missed the little veal label on the front, haha. We had one crock pot of very lean, very pricey soup!

2. Doing More Things Outside — Whether it's exercising, or just sitting still with a book, these things are always best enjoyed outdoors if you ask me. Near some trees, preferably.

3. Blankets — I don't think this one needs explanation.

4. A Nice Stout — After finally growing up and realizing not all dark beers suck and taste like tar, I had my first stout. And I really liked it. I won't be having as many this year, with the cancer and the chemo, but I've been told I can enjoy a drink from time to time. Stouts have slowly become my favorite beers, and this time of year they are in abundance.

5. Candle Scents — Fall is my favorite time for home scents; smells of cakes, cookies, pies, and pumpkin all make me feel very homey in my home. And I love my electric candle warmer since it doesn't require a flame. 

6. Wearing Scarves Again — A scarf is the perfect way to control my personal thermostat. If it's cold, wear the scarf. If it's too warm, ditch the scarf. Easy-peasy. And plus, I just love scarves.

7. The Beautiful Leaves — Duh!

Anyone else excited about fall now? Anything I missed in my list that might be on your own?

Good Doctors

I've been reflecting on the many doctors I've been blessed to have known in my life.

My first doctor—and the one I saw for the longest amount of time—was Dr. Brunworth. He wasn't a perfect doctor, but he was a darn good one.

I will always remember the compassion and care I received when going to his office. I remember the way the door used to swoosh open, the striped seats in the waiting room, the kids corner with toys and books, the way you used to walk down a hallway of files and charts, the various rooms with semi-themes (especially the room filled with all the baby pictures, mom and I used to comb through those seeing if there were people we knew.) I remember the chemical smell of the x-ray room, used to develop the films.

The staff over there knew us well. Mom and I were over there frequently enough due to my CF. And they were so accommodating with that. There was barely a room in that place I didn't see, because if the waiting room was full or it was winter and filled with colds and flus, they'd let us wait elsewhere so I wouldn't catch something. I sat at their nurses lunch table, I waited in the hallway in the back, I'd sat in the doctor's office, wherever they had some space and could get me away from people, they graciously let me.

Thinking back on this, it really seems of another era. I can't even imagine being allowed to do this at Mercy now. Nothing against Mercy, they're fine and all, but in a world with so many more rules and policies—not to mention, a non-existent relationship with anyone on staff—this seems like a request that would be denied. Or would require a lot of explanation. Maybe I'm wrong, but I truly feel that Dr. Brunworth's practice was a special thing.

In my CF specialists, we started out with Dr. Kemp, who was good. Dr. Mallory was pretty good, even though he gave me a bit of a scare when I was young. Then we switched to Cardinal Glennon and were graced with knowing Dr. Albers and Dr. Noyes. Albers was wonderful, and I'll always remember how assuring he was when, after my first visit with him, we were suddenly having to admit me in a hospital we knew nothing about.

I may have shed a few tears when it was my final visit with them. I know there is a picture somewhere of me with everyone there. Judy, the nurse, was wonderful too. I felt such a bond with them that I even called one day after I got married, just to let them know I had. I knew they'd like to know that, since marriage for CF people is not a given. They knew Jarrod, too, since he'd been visiting me in the hospital since I was 19. And a few weeks later, I received a wedding card, signed by everyone on the team, congratulating me and Jarrod. That was a pretty special thing too.

I left them to transition to "adult care" once I graduated college. I transferred to Barnes, and the only doctors I really don't have many good things to say about are the ones at Barnes.

But my most recent doctor in Columbia, Dr. Kouba, was one of the best. She started out as a family medicine doctor, and was not a pulmonologist by training, as most CF specialists are. However, at some point many years ago she took an interest in CF and immersed herself into learning and treating the disease. I truly feel her background gave her a more well-rounded approach to everything, instead of such a focus on the lungs. Yes, the lungs are a BIG part of what makes CF difficult, but they are not the whole picture. Not by a long shot.

Unfortunately, I had to say goodbye to her recently too. I received a letter in the mail saying she was retiring at the end of April. When I called in early May to request an appointment because I was feeling worse, I was fully expecting I'd be seeing the new doctor, Dr. Chairman. Turned out Dr. Kouba was 'technically' still there, and also turned out: she wanted to see me one last time.

I was glad to hear it, because I wanted to see her one last time. Once again, we had developed a great relationship as patient and doctor. She truly, truly cared about me, and how Jarrod and I were doing. I had an appointment in January, and there was no mention of her upcoming retirement. I was very puzzled by the announcement, wondering if she was okay and if something unfortunate had come up. I wanted say a proper goodbye.

During my appointment, she told me she had, ironically, lung disease. And this was a forced early retirement, because she could no longer be in a hospital setting like this. She didn't elaborate on this "lung disease" of hers, and I didn't want to ask too much. But I had a hunch things may not be looking too good for her, because she kind of alluded to how she didn't know what the future would hold.

During my hospital stay, I talked with someone who used to be on our CF team. She told me Dr. Kouba has what is called "interstitial lung disease" and... she would eventually need a lung transplant. Wow...

At my appointment with her in May, it was so sweet because she was like "Yeah, you called and I was like I wanna see Jamie one last time!" She said, if I'd let her, she really wanted to give me a hug. I had been hoping the same thing! And as our visit concluded I asked if she'd be willing to give me her address, I said I'd send her a Christmas card. It was a little hard to tell, since she was wearing a mask, but I think she was tearing up a little. She said she'd love that, and provided it to me.

I am so saddened to hear of her diagnoses. I'm certain I was not the only patient she cared so deeply about. A great doctor like her does not deserve something like this.

As of right now, I am technically under the care of Dr. Chairman, but he will be handing off the CF patients to a new doc there. I'm not sure about all that, but really CF is not our primary focus as of right now.

Dr. Kouba does not know about my cancer diagnosis. I've wanted to reach out to her and see how she is, but if she asks how I am, not including this new piece of very important information would feel wrong. And I don't want her to feel guilty because, in truth, she did misdiagnose me. I don't hold it against her at all, though, and I hope no one else does. And really, she wasn't the only one, if you recall, because even when we went to see an oncologist, the doctor who specializes in this, he didn't suspect this to be cancer. And even when we were doing the test workup with Dr. Chairman, none of them felt this would turn out to be cancer either. No one expected this to be cancer because I don't present any of the usual symptoms associated with this, and because I am so young. Yes, a part of me will always wish that we could have found this sooner (who wouldn't?), but even if we had found it the first time I told Dr. Kouba about this 'lump' near my scar, it would have already been stage four because it would have spread.

Now I'm meeting a whole new team of doctors with this cancer process. I've been told by multiple people that Dr. Tan, from Siteman, is really good. So I'm thankful to be on his radar. Back when we were thinking this was ovarian cancer, I was briefly under the care of Dr. Hunter and he was amazing; I so wish he could have continued to be my oncologist, but his specialty was gynecology.

I hope you have also been blessed with good doctors in your life. And if you haven't, I encourage you to do something about it. Even though it took a little bit of pushing from Jarrod, switching from my doctors at Barnes to my awesome doctor at Mizzou was the best thing I ever did. And it probably saved my life, because I know with 100% certainty I would not be sitting here as healthy as I am right now if I'd continued on at Barnes. Part of that is me, and that I am a different person with a different outlook on life and on my self-care now, but still: we all look to our doctors for their background and experience. Like I said, it can feel like a gamble, but sometimes switching is worth the risk. Your health is the most important thing in your life, don't settle for mediocre care if you feel there might be better options out there.

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. :)

It's been quite a week...

Forewarning: this will be a long post. But it's an important update on me, and there is good news at the end, I promise. 

Last Monday, Jarrod and I celebrated our 7th wedding anniversary at the Lake of the Ozarks. Can you believe it's been seven years? I can't...

But really... it wasn't much of a celebration at all.

We had planned to spend almost nine days at the lake, but that got cut short. And was clouded over with some medical news I received right before we left.

So, I've had this hard lump/bump in my abdomen since February. It started out right above my belly button, right below my scar. I brought it up to my CF doctor, she felt it, and thought maybe it could be a hernia or my scar tissue changing; since it wasn't causing me any pain or discomfort, we took the "wait and see" approach. If you didn't know (because I never wear a bikini) I have a very large scar on my abdomen due to my intestinal surgery I had when I was born.

As time went on, it changed a little. It expanded to more of my scar. I briefly brought this back up again at my appointment right before my hospital admission, and she still was not concerned.

Finally, after talking to a friend about it, I decided to go see my primary doctor to find out what it was. He ruled out a hernia but agreed it wasn't too concerning, likely something with my scar tissue changing, and ordered an ultrasound to look at my abdominal wall.

The next day I went for the test, a technician came out and said that after reading over my chart, she felt I would better be served by having a CT scan. I agreed to go ahead and do it, since we had our anniversary vacation coming up the next day, so it would be over a week before I could come back in and get it done.

That day they called me with my results, and it sent me into a tailspin. They said they found a mass on my liver, which could be a "benign lesion" or something metastatic, and multiple nodules in my abdominal wall, which would probably need to be biopsied. They set me up to see an oncologist the next day.

Wait... what?! Mass on my liver? I went in to find out about my scar, and suddenly there's a mass on my liver?

That Friday, when we were supposed to leave for vacation, we saw the oncologist and despite what the CT scan said, he said this didn't feel like cancer. Actually, he wasn't very concerned about it at all after my exam and finding out my CF history. See, the CT scan did not take into account any of my history with CF. It had no mention of there being scar tissue in my abdomen either, and all of these nodules are right around my scar tissue. Plus, I was able to pull up 4 years of ultrasounds mentioning calcifications in my liver that were in the exact same area as this "mass" was. I brought those with me, and with all that combined, he was not concerned and told us to go on our trip and we'd deal with it when we got back. He wanted to do a PET scan just to make sure nothing was going on. We went with that good news, shared it with our parents, and decided to leave for our trip Saturday morning.

By Sunday morning at the lake, I was having doubts. I didn't want to wait two weeks and agonize over what this was... I wanted to come home early and do the scan. So last week I called them Monday morning, they set me up for the scan on Friday, and set up my follow up with the doctor for the following Tuesday (today.)

But that Monday, our anniversary, I was a mess. I was hysterical, there is no other word for it. My whole body was tense with worry, I could barely function, I was scared to death that this would be a stage IV cancer. I don't know how many times I cried, all I wanted to do was lay around the house, I had no interest in doing anything. I was completely depressed. We cancelled our dinner plans, because with me being in such a funk, there was no point wasting money on a nice dinner out. We tried to salvage part of the day with an evening boat ride, and that helped a little, but the whole trip was out of whack and we decided to come home on Wednesday.

I'd say Monday was my lowest point. But every day, leading up until today, I've had bouts of worry. Some days were better than others, some days I could calm myself down and remind myself of what the doctor told us ("I don't think this is cancer, I don't think this is anything to worry about."), and other times I fell back into that pit of worry. And almost every day Jarrod had to patiently talk me back down and get me to remember all the good news we had so far that pointed to the fact that this was not cancer.

It just didn't make sense... I had NO other symptoms. I wasn't tired, I wasn't in pain, I still have my appetite, I'm not jaundiced, all my bloodwork was pretty normal, on and on. Yeah, this hardening of my scar tissue felt kind of tight and like a pinching feeling at times, but I told him all that, and he still didn't feel this was cancer.

Friday, the scan went fine. So, for the PET scan they inject you with a radioactive material and you have to sit for 45 minutes. In this instance, it was me and another lady sitting there. I know I looked scared out of my wits, so she started to talk to me. I said I was afraid, and she said the test was easy and nothing to be afraid of. I told her no, I was scared what the results might show. Through a brief conversation, I learned she had the same doctor as me, that she used to have lung cancer, and she gave high praise for this doctor. She told me that "Anything he tells you, he says from his heart." and that I should trust him and the fact that he wasn't concerned about this. It was nice to talk with her, and I have to believe God placed her there for me. She was also the second person who told me wonderful things about this doctor.

So today, we saw the doctor. And after the PET scan, he still says this does not look like cancer! Yes, both the area in my liver and the nodules around my scar lit up on the PET scan, but they didn't light up as bright as cancer would. So that tells us that there is some sort of inflammation or infection there, but there is a very small chance it would be cancer. He recommended that I follow up with my CF team and a surgeon with them to look at my scar tissue laparoscopically and do a biopsy, just to find out what it is. So we are still not done, but right now, all signs point to this not being cancer.

I admit I was not entirely relaxed after this news, I think I was hoping for a definitive yes or no answer today. But I realize he can't definitively say that right now, without a biopsy. However, we really did get the best news we could have hoped for. The thing I am clinging to most, as good news, is that NO OTHER spots on the PET scan lit up, which means this does not look like something metastatic. That is very reassuring. I mean, my lungs lit up, but he fully expected that because of inflammation in my lungs from my CF.

He said there are many things this could be. Is cancer one of them? Yes, but that is way down the list. Something is going on with my scar, we knew that, and now we just need to look at it and find out what it is so we can address it if we need to.

I am so relieved right now, and feel like I can finally get back to a bit of normalcy. Getting through to this day felt like the slowest march ahead. This has been quite the week, and I don't know if I've ever had a more difficult week in my life.

I have been praying and pleading with God so much. I felt deeply in my heart that God is not done with me yet, that God has more plans for me, and that this would not be the end. Also, on Friday before my PET scan, while I was praying once again, something happened that I just can't quite explain and it might sound silly, but I think it was the sign I had asked for days before. I was laying on the couch, eyes closed, listening to the TV, mostly praying and worrying, and I felt a tap tap on my shoulder. Clear as day. I actually opened my eyes and looked up to see if anyone was there. There wasn't, but I have never felt that feeling in my shoulders before or since. I feel like it was God telling me he was with me. Even if it was a muscle spasm, it came at the perfect time. There have been so many other times where I asked God to help me and be with me, and minutes later, I found myself at peace.

So the next step is to get the biopsy done. To throw a wrench in all this, my CF doctor in Columbia just retired and I am semi-without a CF doctor right now. I barely know my new pulmonologist, and even then, he barely knows much about CF outside of the lungs. I plan to call SLU tomorrow to ask about their program, because I think I need a doctor who has some CF knowledge, especially with this new weird scar tissue issue thrown into the mix. Maybe we'll stick with Mizzou to get this done, maybe I'll switch.

In the meantime, please continue to pray for me. Pray this is a whole lot of nothing and that it can be dealt with easily. Pray for strength and peace for Jarrod and I, too.

And one last thing... you know the phrase "Be kind, for everyone you know is fighting a battle you know nothing about"? Or some variation of it? This popped in my head many times. We didn't want to tell anyone until we had the news from today and a better idea of what was going on. It was a difficult conversation I didn't want to try to explain to multiple people; like ripping a bandaid off over and over again when all I'm trying to do is distract myself and live my life. I have always liked this saying, and I've always tried to be kind to everyone because of it. In light of all this, please try to be kind to everyone you meet. You just never know what is going on in another's life.

Here's to a Healthier Me

Jarrod got me a Fitbit for my birthday! I've been contemplating getting one for years. I even asked on a CF forum one time if anyone had one, did they use it much, did they like it; stuff like that. And that was THREE years ago. I don't make decisions lightly...

I know it's still shiny and new right now, but it's definitely getting me up off my butt from my desk during work. Since I work from home, I have very few reasons to get up from time to time. It's not like I'm walking to someone's office down the hall.

The sleep tracking has been surprisingly interesting! I'm not sure how accurate it is on tracking my REM sleep, but I believe it when it shows how much I waver between "light sleep" and "deep sleep." It makes sense, too, and explains why some days I feel more rested than others.

So far, I'm really liking it. Like I said, I know it's still new, but I can see this helping me continue to get off my butt and move more. With the ability to set multiple different goals, it's motivating to see you're close to your goal, and to keep going so you reach it.

And today I took another big step: I joined the Y.

I went with mom to the YMCA on Monday to check it out. I've been feeling for a little while now, and especially since I concluded my recent tune-up, that I needed to get back to a gym. I notice how things are more difficult, like coming up the stairs or getting groceries out of the car. All of the upper body strength and step strength I built up all the way back in pulmonary rehab is long gone. Anything I may have continued at other gyms is gone as well; it's been at least a year and a half since I've been to a gym to lift weights.

But I need someone to go with, otherwise I reason myself out of it and stay home. So my plan is to go with mom a couple days a week, and to treadmill at home the other 4 days. It's great that I have the ability to go during the afternoon when it's less busy, too. I don't like working out around tons of people in case I end up coughing a bunch.

But I'm excited. I'm ready to get back to working out. I think the Fitbit is going to help give me a little nudge, too, so I'm glad I have that for extra motivation. It's probably a good thing all of this is coming together right now, right at the end of my tune-up when I'm feeling my best. Sometimes you really have to strike while the iron is hot, while you're motivated to make a change.

Even so, it's a hard step to take. It's hard for me to keep myself going sometimes, because the improvements I make are SO small, not even detectable for weeks if not months. But I have to keep believing I can improve, I have to believe my lungs will be better for it. It's hard to explain to you how much every day I worry if I'm getting worse. With every task that causes me to get a little winded, I'm analyzing and trying to compare to how I felt last time. Did this leave me more out of breath than yesterday? Last week? Maybe not? I thought I could do this more easily... And with exercising, my gains are so tiny, it's hard to keep going and to believe it'll make a difference when no difference is seen. But, I have to almost remind myself, I'm operating on 30% lung function here... nothing is going to be easy. Things are going to make me feel short of breath.

But here's to making a change! Let's hope in three months I can look back and say "Wow, what progress I've made!" And let's also hope I don't catch a cold because I swear, Murphy's law or something, every time I resolve to do something like this, I come down sick.

Friday Fast 5

Five quick things!

1. I've discovered a couple new uses for the library that have me pretty excited. I'm happy to see our library has been really beefing up their collection in the past couple years. So here goes:
1. Movies—turns out the library has a pretty robust collection of popular movies. They also have most all recent seasons of popular TV shows people are talking about. So if you can't find what you want at Redbox, try the library.
2. Cookbooks—a TON of cookbooks. Who knew? I've already put a request on a few of them. I am always keeping an eye out for new recipes to try. But I've also learned that most all recipe sites are user-contributed, meaning anyone with an account can share a recipe on there. That's not to say they're not good recipes, but my point is there is zero expertise required. Cooking blogs can be helpful in this area, but I still believe in the old-fashioned ideology of: if it was published in a book, it means someone had to read it over, approve it, therefore it's better. However, I do not have the shelf space for lots of cookbooks. Plus, most times I only find a handful of recipes I'll make in one book, so I'm looking forward to this.
2. I have to put in a plug here again for the audiobook apps from the library. I'm still surprised how few people know about them. Jarrod's listening to audiobooks now, and another friend just started too. It's so easy and so nice. You just stream it from your phone, or you can download it and not have to worry about a wifi connection.
3. I am always reading more than one book at once, and most times I have 1-2 paper books, and 1 audiobook in progress for car rides, lunchtime, and exercising. Those are the times I listen to books and podcasts the most. Right now, I'm listening to Moby-Dick.
4. I also discovered my new favorite coffee drink: the breve. It's made with half and half instead of milk, frothed like a latte, but so much creamier. Mmmmmm! My backup: a dry capp.
5. I had my annual eye checkup this week, and learned about the concerns with your eyes when it comes to diabetes (since now I have to check yes on the diabetes box.) In essence, diabetes highly raises your risk for blindness. But, if caught and treated early (as in, going for my yearly checkup) it almost always can be prevented. That being said, I'm not at high risk for this complication anyways because: 1, my diabetes is under control; 2, I'm barely diabetic as it is; and 3, I see my eye doctor every year, I never skip it. Even so, he wanted to take a photo of my retina just to have a baseline for me, if ever things should change. I totally agreed, and sat down at a new machine that was like a camera flash an inch from my eye. He showed me the results and it was pretty cool, seeing the back of my eye up close like that!

Getting back to normal

I've finished with my home IV meds, thank goodness. I was taking two meds, the one which I'm allergic to, hence the Benedryl. We actually decided to halt that one on Saturday. I'd been starting to have more side effects issues and I ran my morning dose that Saturday, had a couple more things going on, and decided it was time to call it quits. I finished the other one out until Monday evening.

I tell ya, taking all that Benedryl this time really wore on me. I felt tired nonstop, I had no energy for things, I had no motivation. I had no appetite, I practically had to force myself to eat. Ya know, I can tolerate 25 mg pretty easily. Yeah, I'm a bit tired, but it is nothing like taking 50 mg all the time.

Saturday after I stopped, and wasn't on Benedryl constantly, it's as if a fog started to lift.

The two days following, it was as if all of the allergies and everything that had been held back during that time suddenly whooshed forward. My nose was running constantly, I was coughing more. It was awful, and weird. And then, it ended. So I at least feel back to normal on that front.

But right now my biggest issue is sleep. I feel like I've forgotten how to fall asleep! Since I was constantly tired, I would lay down and rest a lot, even if I didn't fall asleep. But most times I did, because I was so damn tired. I think I had a surplus of sleep, because the day I stopped the Benedryl I couldn't fall asleep until 5am, but I felt fine the next day. And I've struggled sleeping ever since. It really sucks.

Today I went back to work. I'm glad to because I'm happy to have a routine again. I semi-dread the day I will no longer be able to work (and hopefully that's still years away) because it is so hard to provide yourself structure day in and day out when there is no reason to. I'm not the kind of person who can just work up the motivation to hold myself accountable for that kind of stuff. I'm an "obliger" and struggle with that.

Unfortunately work was crazy nutso, but whatever. I woke up early, got everything done for the day so far, and feel like I can keep moving forward. Here's hoping I can rediscover how to sleep again!

Home again

Monday I went in the hospital for my usual tune-up. Things were fairly normal, yet not.

I went straight into the ICU for my "desensitization" to the one IV med. Have I ever told you how much I hate this? My mind's a bit fuzzy right now thanks to all the Benedryl, maybe I've written about it before, but yeah. I very much dislike having to go through this process. This hospital requires I do this in the ICU for close monitoring, which I understand, but that means I am hooked up with the telemetry wires, a blood pressure cuff, and oxygen SATs at all times. Plus sometimes I'm hooked up to an IV pole.

So... getting up out of bed—like, to use the bathroom, or just to get up and move, or get something out of my backpack—requires assistance. Even rolling over while trying to sleep is a chore, and I barely got two hours' sleep that night. I was super cranky on Tuesday. (Oh and in the ICU, there pretty much is no bathroom, it's just a toilet in the corner like you're in jail. I've gotten over the initial shock of this, because the truth is that most people who are in the ICU cannot walk and will not use it anyways. I'm a rare case, and there for a very specific and rare reason, and my nurses almost always comment on their surprise on how I just walk myself right into my room; it's just not what they're used to.)

Long story short, things didn't go quite as smoothly this time. I think I was in a bit of denial, but I have to call it like it is: I was having a reaction to the med I'm allergic to (the one we did the desensitization with.) I guess the desensitization didn't work as well this time? I don't know.

So from Tuesday morning until Thursday, I was dealing with varying waves of fever, chills, rash, and itchiness. We finally upped my Benedryl on Thursday and that helped immensely, and I haven't had issues since. They felt okay to send me home yesterday, and I felt comfortable to come home as well.

Mostly I wanted to come home, in part because of the obvious reasons you'd think of like sleeping in my own bed and not being bothered by beeping IVs. But also because the hospital no longer has a treadmill for me to walk on while I'm there.

We CFers used to have a nice little place to exercise while we were stuck in the hospital. It had an elliptical and a treadmill, and a few weights and things I don't know if anyone ever used. There have been more changes to this little 'exercise room' than I can count, and apparently in the most recent moving of the room, the treadmill broke. This was possibly the most ancient treadmill you could imagine, I'd never seen another one like it. I would say it was probably from the 80s, so I guess I shouldn't be surprised, but it still sucks. I can walk the halls all day long but it's not going to get me a decent cardio workout like I could get on the treadmill. Exercise is an important part of the CF regimen, and especially in trying to gain back lung function from a tune-up, so it's very disappointing to me that they don't have this anymore. The elliptical is too big for my small stature, and too difficult.

All that to say: I wanted to get home quickly so I could get MOVING again.

And here I am, sitting on the couch. I'm taking 50 mg of Benedryl three times a day, before each med dose, so I'm a bit groggy and I hope this all makes sense. The plan is the usual: two weeks of this and hopefully I can then stop my meds.

I'm still finagling with the timing of my IV meds, so I had to get up at 3:30 am this morning to give myself a dose. But, I actually had something to watch this morning with the royal wedding and all. I dozed off a little here and there as guests arrived and woke up with a startle as the trumpets blared (truly blared) to announce the arrival of the bride. I promptly fell back asleep around 9am after everything was over, and Jarrod was awesome and took care of a lot of small chores this morning and made me breakfast. It's good to be home.

Good News

Good news on a couple fronts lately.

For starts, it's been 7 months since I was in the hospital! Anytime I can make it past 6 months I am elated. I am feeling pretty steady, and I think there are a couple changes I've made that are helping in this area. Here's hoping I can keep it going for a while longer.

Secondly, I've been doing my allergy drops since the end of January (I think) and call me crazy, but I already think they are helping. Right now should be prime time allergy season and I should be feeling like complete crap, but I don't! I keep waiting for it to happen, but it's just not happening. It's the strangest thing. I actually googled it, and some say you can start seeing benefits from allergy drops as early as 8 weeks, which would mean I'm not totally nuts. 

If this is just the start, and things will continue to get better, gosh I am so glad I chose to start doing this. Allergies have gotten so much worse for me in the past 5 years or so, leaving me up coughing almost all night long due to all the extra drainage from my nose. I know, for sure, not having such severe symptoms has also helped how I'm feeling overall, and with the whole '7 months no hospital' thing. 

Friday Fast 5

Five quick things!

1. We saw Hamilton on Sunday! It was really good, a very impressive show. The writing/music is quite a masterpiece. That being said, I can't say it's my new favorite musical. My favorite either has to be Wicked or The Lion King. This is up there as one of the good ones, and I'm really glad I saw it, but I don't know... I guess I've been conflicted with this because there is so much hype around it. What am I missing here? But if I'm being completely honest, it didn't totally blow my socks off. I chose to NOT listen to the soundtrack and familiarize myself with the music ahead of time, which I've done on nearly any other big show I've seen. I mean, I knew a couple of the songs, I could have sung you "Alexander Hamilton" in the specific notes, but I didn't listen and memorize it all. I've been wondering if that was why I felt how I did? It was REALLY good, but for me it wasn't the best show ever on the face of the earth. 
2. I also went to see Godspell at Borgia last night, and it was good. They took a slightly different spin on the show, but a very modern one that felt right with the times. 
3. I finally was down in Chesterfield valley and drove past where they are building Top Golf... Holy. Crap. What a monstrosity that thing is. I can now understand why some locals weren't too happy about it being right there. That being said, I'm curious to try it. I've never played golf in my life, and don't intend to, so this would be my only opportunity to swing a golf club outside of putt putt. I expect I will be equally as bad at it as I am at bowling...
4. ...the last time I bowled, for Jarrod's birthday, I got a 68. I'm just that good.
5. I'm really bummed it will be cold again on Sunday, gosh I'm ready for this spring weather to stay here!

Friday Fast 5

Five quick things!

1. I really can't believe Sunday is Easter. Holy cow, where did the time go? Is this the earliest Easter has ever fallen? I think part of the reason it seems weird is because it's still so cold and rainy here. Spring is hardly anywhere to be found. I saw our Easter photo from last year, and I was wearing a sleeveless dress. Granted, Easter was two weeks later than this year's but still. I haven't even switched my closets over to my spring/summer wardrobe yet, it's been too chilly.
2. Jarrod turned 30 on Wednesday! In the morning I picked up doughnuts from Schulte's for him to take to work and we went out for Korean BBQ after work. I'd never had it before, but he had it a couple times in California last year and really liked it. And it was good! I was proud of myself for trying a bunch of stuff too, kimchi for one (it's not for me, but hey, I tried it.) Turns out tofu isn't that bad, especially if it's been cooked a little. 
3. It's funny, though... for both of our 30th birthdays, I realized we went to places where we had to cook our own food, haha. For mine, he took me to the Melting Pot, where you cook your meats in your fondue pot of boiling broth. And for the Korean BBQ, you cook your meats on the grill in the middle of the table. Both of them were also a LOT of food.
4. Trivia Night is coming up, and I've been busy finishing things. I can't believe it's a week away! As always, if you're interested in getting a table together, it's April 7, let me know and I can send you the flyer.
5. I bought Josie a new ball and it's turned out to be one of my best purchases. Josie absolutely LOVES to play ball. She chews the fuzz off of tennis balls, so a racquetball proved the best kind for her. But ever since we put in hardwood, playing ball became downright dangerous. Since the racquetball is so rigid and made the way it is, it bounced all over the place on the wood floor. Not only did Josie slip and slide everywhere trying to catch it, I started to fear for our home. One wrong bounce could send it flying into something breakable or leave marks on our walls. We had to only play ball outside :(. On a whim, I bought her a new ball. It's not perfectly round, and the material has more give to it, all meaning that it doesn't bounce all that much. It's great and she loves it. Woo hoo!

Shop Small

I had a conversation with a woman who owns a local business in our small town. While I was making my purchase, I also asked her about donating a gift certificate to an event I was chairing. She said she couldn't, but could offer some coupons for free coffee. Then we had a nice little chat.

In a matter of words, she basically said how she gets these requests all the time (she said she kept a notebook one year, and they were almost daily.) As much as she'd love to support everyone, this is the best she can do. Otherwise she would go out of business.

I've been thinking over our conversation ever since. She was so friendly, and I greatly appreciated her donation and her openness and warmth. I told her I was new at all this, and I was completely surprised to hear that almost every day, someone else just like me is asking her for something.

I've lived here almost my entire life. I've seen our small town expand and grow and bring in a lot of chain stores and restaurants. And while that's exciting and good, to a point, it also means it gets that much harder for the little local guys to compete. I am still saddened that our Benjamin Franklin 5 & 10 (a.k.a. Annie's) had to close years ago, and I realize it was probably due to us getting a Michael's store. I can list off a handful of nice fine dining establishments that have gone out of business too. And those are the ones just during my lifetime.

Towns and cities are constantly changing, for sure, but with the added competition from online sales and the convenience of two-day Amazon shipments, it has to be harder than ever to run a small business.

I really like the sentiment and meaning behind the phrase "shop local" or "shop small." But in truth, I'm not the best at putting my words into action. Maybe you struggle too. After that conversation, I realized I need to work on changing this.

The big chain stores are hard to ignore, with their large buildings and big, bold signs in high-traffic areas. But there is definitely something to be said for paying a little more to support a small business. Getting the lowest price on anything and everything is not the point of life. If it were, we would all be wearing sweatpants from Walmart and eating McDonald's (because seriously, can you believe how cheap their food is now?)

It's not going to happen overnight, like all habits it will take some time. And I'm not even arguing buying everything you possibly can from local shops, because I realize most of us live on a budget that might not bend and flex.

But prioritize.

Everyone laments when a small business announces they will be closing... for good. I have seen it time and time again: the shop announces on Facebook they will be closing their doors. And how they love this community and are sad to leave, but they just can't keep going. And they want to thank their customers and support they've received. But they have to do what they have to do. Many people swoop in with sadness over the news, claiming they were their "favorite" or raving about this or that, but words like this do not equal dollars.

If there is a shop you really like, make a point to go in there more than once a year. I'm certainly guilty of this, only patronizing a couple businesses around Christmas time. When I walk out, I'm always like "Why don't I come here more often?" I'm a big believer in putting random, mundane things on list apps so why not include something like this? Add "Check out what's new at _______"

And while sad comments about a shop going out of business don't equal dollars, you know what could? Good reviews.

Reviews really have become the keystone of online purchases and decision making. It started with Ebay sellers and knowing you wouldn't get ripped off, to Amazon with product reviews, to Yelp, to TripAdvisor for places to go, to Facebook, on and on. So if you can't afford to shop somewhere, you can certainly afford to give them a great review so someone else can. It only costs you a little bit of your time. And in some places (like Facebook) you don't even have to write anything, you can just rate them.

I adore this little store that I went to. It offers more flavors of coffee than I've seen anywhere else, plus loose leaf tea, plus a myriad of other cute and useful household items. I would be truly, truly saddened if she ever had to close her doors. So starting now, I'm going to make a concerted effort, until it becomes habit, to go to her store more often. I can afford to pay just a little more for a bag of coffee beans.

Another lady opened a book store last year here. It is the most adorable book store, in a little historic corner house. It's warm and inviting, and everything a small-town bookstore should be. Last week, I messaged the owner asking if she could order a book for me. I know fully well I will pay full price for it, whereas I could just order it off of Amazon for 30% cheaper, but right now I don't care. Walking through her store is so... up-lifting. Back in college, when I drove away from a Border's store for the final time after their going-out-of-business sale, I almost cried because I thought this was the beginning of the end of book stores. I love book stores, but buying all my books from Amazon does nothing to keep book stores alive and well.



You have to admire small business owner's for their willpower, too. I know I don't have the guts to do it. With the entire world seeming like it could be against you, with cheaper prices or fast convenience or better roadside placement, it has to be exhilarating and frightening to take the plunge. You have to admire those kinds of dreamers. Those are the kinds of people who truly believe in their community. Who believe that, no matter what, it was worth a shot, because had something to offer; they bettered their community and the lives of their customers.

When you think of it like that, who wouldn't want to support them?

*Today was Mom & Pop Business Day, and inspired me to finally publish this post. I hope it inspired you a little bit :)

Friday Fast 5

1. I am really trying not to be paranoid, but with all these stories about the bad flu season we are in, and cases where normal, healthy kids are dying, it's hard not to. I still have to live my life, though, but I'm cautious. I don't make unnecessary trips out; I don't browse around stores for the heck of it, like I might during the summer, things like that. I have Jarrod make small trips to Schnucks when I can, instead of me going. And I still attribute the two habits I have mentioned on here to my [so far] success in avoiding colds and the flu this season. I also try, as much as possible, to keep my distance from people no matter what. That's about all I can do without being confined to my house for 4 months. And that sounds like zero fun and no way to live your life. 
2. Jarrod and I officially joined the Jaycees at the end of last year. We've jumped in with both feet, Jarrod being the new webmaster and I am... planning a trivia night! I've been busy writing questions and organizing everything for it. It will be April 7th, starting at 7pm at the VFW Hall in town. If you're interested, let me know and I can send you the flyer. Or contact me to reserve a table! 
3. I've started crossing something off my bucket list: I'm learning how to sew! Since Toni in town retired at the end of the year, I gave in to the fact that it was time for me to learn how to hem pants. Both Jarrod and I always need to have our pants hemmed. Mom's good friend Gwen is teaching me! I had my first lesson in November, and actually hand-stitched a pair of Jarrod's dress pants at Christmas! I was so proud of myself. I'm glad I finally decided to give this a try, because it's really not as hard as I thought it would be. 
4. We are looking forward to the Olympics. Jarrod likes the winter games more than summer games. We actually signed up for Sling TV for one month, then we'll cancel it, so we can watch more than the highlights they run on channel 5 in the evenings. 
5. Josie is getting pretty scruffy these days. Her face is in the "slightly shaggy but adorable" phase that I really like, but the rest of her hair is getting long. Problem is, it's still pretty cold out and I'm hesitant to groom her anytime soon. She just might be a shaggy dog for another month or so.

Josie and the Beeps

Years ago, there was a terrible thunderstorm in the middle of the night. Lightning struck a house on the street right next to ours, causing a huge boom. It freaked Josie out, who was laying on the bed. When it happened, it also made my oxygen concentrator beep due to the surge. All of it, combined, made her want to run for it. To where, I have no idea, but we tried to keep her on the bed with us. Knowing what I know now, that was probably not the best thing for us to do, but we had no idea.

Ever since then, she has been scared of thunderstorms, especially ones at night. I've worked with her a lot to try to calm her fear and redirect it. If possible, we play or go in the basement. And if she tries to hide under our bed, as I now think she was wanting to do that initial time, we usually don't block her. If that's where she feels safe, then we shouldn't try to stop that. That being said, my biggest fear with that (and still is) is that a storm might progress and get so bad that we actually NEED to go to the basement, and it will be hard or impossible to coax her out.

Anyways, lately I've noticed a new thing she's scared of: beeps.

I'm not quite sure where this came from except I can say the first time I ever noticed it was about 4-6 months ago when we had a beeping smoke detector in the basement. I actually asked my dad to come over and fix it around 11am, instead of waiting for Jarrod to come home, because it was bothering Josie so much.

So in this case, she shakes. You'd think she is shivering, but she's nervously shaking. Even up to an hour later, sometimes I still catch her having tiny little shakes.

This is on my mind again because last night, as I was demonstrating my new glucose meter to Jarrod, we later noticed she was sitting in a corner of the kitchen, shaking. It took me a second, but then I realized that it must have been the tiny beep that my meter makes when I turn it on. Wonderful... this thing I'm now supposed to use 4+ times a day is going to make her nervous.

I love Josie so dearly, but I gotta say this is the last thing I feel like tackling right now. I'm going to have to do some good research on training her out of this, because this is not going to be good if we let it go. Fortunately, it doesn't seem like our alarm system bothers her, and maybe because that's predictable. She knows this thing in the house beeps when we leave, and it beeps again after we open the door and are back home, which is almost always followed by the sound of the garage door. But even the other night I was watching Star Wars, and I noticed her ears move every time R2-D2 made his beeps and boops. Luckily she didn't start shaking, but she was definitely noticing it.

Le sigh... I can turn off the beep on my glucose meter, which I might do, but still. We really need to fix this problem before it gets any worse.