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!