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.

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.

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.

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.

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

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.

The Sugar Results

As I mentioned in a previous blog, we found out my blood sugars were high in December, and I am officially now considered diabetic. Today I had my first appointment with my diabetes doctor, aka endocrinologist.

First off, I think I'm really going to like him. He has his wonky moments, I noticed, but he really knows his stuff. He spent over an hour with me at my appointment. He explained things so well and took his time and never, ever gave me the impression he was just trying to move on to the next patient. It was really nice.

As I said before, CFRD is its own type of diabetes. It has aspects of Type 1 and aspects of Type 2, so it's a bit more complicated to treat.

The biggest question—and anxiety—I had going into this was: will I need insulin or not? Everything on the CF website said the only way to treat this is with insulin. He echoed those same sentiments today, but luckily there is a bit of "phasing in" to this. Right now, he was encouraged to see my fasting level where it was. It's not on the high end, and tells him that most likely a small dose of long-acting insulin should work for me right now. There are two types of insulin: rapid- and long-acting. The rapid/fast stuff is what people use right around the time they eat. It involves counting carbs and math and figuring out how much you need so your blood sugars will land in their target area and not be too low. Long-acting is a once-a-day thing, and it does just that: it lasts a long time in your system at a consistent, smooth level.

Obviously, knowing nothing about what might be used, I was dreading hearing I would need (rapid) insulin at every meal. I'm so glad I don't need to do that right now. At some point in the future, I most likely will. He explained that our pancreas are always producing insulin, but due to the nature of CF, my pancreas will produce less insulin over time. So eventually, yes, I will probably add in the rapid insulin. But for now, and hopefully for many years, the long-acting stuff should do the trick.

So that's what I mean by "phasing in"... in future I will have to count carbs and deal with more insulin, but for now I can start out with less; kind of ease into diabetes care.

There is a chance the insulin will not work, though. He has had a few patients that can't tolerate insulin because it keeps their blood sugar at a constantly too-low level, so that is something I'll have to watch out for. If that happens then we'll try something else. For most people, this works, and I'm hopeful it will.

Not like I'm dying to stick myself, but I actually wanted to get a glucose meter, because I like data and knowing what's going on. Ahead of time, I checked our insurance drug formulary to see which meters were covered and I picked one out I liked. It seems that diabetes testing has greatly improved in the past few years, so thank goodness for that. There are many meters now that require so much less of a sample of blood to test, which means a smaller finger stick, which means less pain in my fingers. I am so thankful for that, because I must admit I was a tad worried what this might do for my crocheting hobby; wondering if it might make it more unpleasant and then I wouldn't want to do it as much. Plus, the meter I chose has an app and will Bluetooth my results to my phone. Considering all of the stuff I have to keep track of and remember these days, this sounds like a good convenience to have.

They happened to have the meter I wanted on hand, so they gave me one (yay freebies from drug reps!) I've already taken two readings so far today, and they are so small and light that maybe my finger aches for 30ish minutes after, but like if I press on my fingertips right now, I don't feel a thing. Hopefully that stays that way.

So for now, he wants me to test my blood sugars 4 times a day, basically. For two of my meals, he wants me to test before and then two hours after. That will give us a good picture of what's going on and we can have data for my follow-up in two months. And I'll start my Tresiba insulin once I pick it up tomorrow from the pharmacy. Tresiba ready!! (Darn that company for having so many commercials on TV with such a dumb, catchy jingle!)

Avoid the flu like you have CF

Since the flu season is really kicking up here, I thought I'd share my top 2 tips for avoiding illness. Ever since I've adopted these habits, it has helped greatly. I think I've mentioned these on here before, but here they are again.

1. Wash your hands immediately when you get home—I set my purse down, take off my coat, then immediately go to the kitchen sink to either wash with soap or use GermX. That way all germs stop there. And, obviously, for this to work you have to properly wash your hands for a little while; a quick rinse-and-go will not work here. Same with GermX, follow the proper instructions for maximum benefit.

2. Don't touch your face with your fingers or palm—This one took a lot of work, but now it's just another old habit. I never touch my nose, eyes, or mouth with my hands when I am out and about. I allow myself to at home (since I've already washed my hands when I walked in the door) but not while I'm out of the house. If my nose itches, I use the back of my wrist or lower sleeve; basically a surface that has not come into direct contact with other things. I also use my elbows and the side of my body to open doors to avoid touching the handles, if possible.

Being at high risk, and since it's a really big deal if I get sick, I realize I am hyper-aware of this stuff compared to the average joe. There are SO many surfaces we encounter that no one ever wipes down such as menus (sometimes wiped down quickly with a cloth, but who knows how clean it is), freezer/fridge door handles, elevator buttons (I push these with my elbow if possible), soda fountain buttons, buttons for anything really, credit card pens, touch screens, gas pumps, railings, the pen your waitress brings you to sign the receipt (BYOP, I say—bring your own pen; I almost always use my pen from my purse), shopping cart handles (though some stores offer wipes now, which is nice), food trays, on and on.

Avoid germs like a person who has CF, haha!