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.