Friday Fast 5

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

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

First one done!

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

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

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

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

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

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

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

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

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

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

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

Today was the first step... onward!

Plan of attack

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

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

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

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

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

Art heals

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

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

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



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



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

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

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

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

Back to the liver

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

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

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

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

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

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

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

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

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

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

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

It's been quite a week...

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

Here's to a Healthier Me

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

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

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

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

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

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

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

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

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

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

Friday Fast 5

Five quick things!

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

Getting back to normal

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

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

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

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

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

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

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

Home again

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

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

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

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

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

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

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

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

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

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