I survived our first day back at work! 6 hours of Smart Board training. I don't know how much I'll actually retain, but it was interesting. I'm going to give myself grace and not worry about using too much new technology. There will be plenty of time for that as I feel better.
I realized today that lots of people are curious about how my chemo treatments actually work, so I thought I'd give a little detail. It really is quite a process. We go in to the Hemotology and Oncology Clinic at PCI. The visit starts with one of the nurses accessing my port and drawing blood for labs. Then I go back to the waiting room while the labs are run. Then they call me back again, get my weight, and then we go to a room to meet with my Nurse Practitioner, Sylvia. Actually, we usually see Marcia, my scheduler, first. She takes my blood pressure and temperature and pulse. Then, often my nurse Candace will come in and ask a million questions about how I'm feeling. Then Sylvia will come in once my lab results are in. We'll discuss the labs and see what we need to do. Then we'll go back to the chemo area. By this time we've usually been there almost an hour. I'll go pick out a comfy purple chair and settle in. There are 4 chemo nurses, and one of them will come over and get a small bag of saline going while all my drugs are being mixed. Then we'll start with anti-nausea drugs, steroids, and now also benedryl and other antihistimines. Each drug has its own infusion time. Some only take 15 minutes, others take an hour or more. If my potassium is low, it takes 2 hours to infuse it. The actual chemo drug comes last. Once it's done, they make sure I'm feeling ok and don't need any extra anti-nausea drugs or lorazipam. Then I'm free to go. It usually takes around 3 hours for all the infusions. They have snacks and drinks, so Darrin always has some pistachios, and I often have pretzels. There are also some really good granola bars. There is grape juice and cranberry juice, too.
If I'm there in the morning, I get a visit from Sue, who does wonderful foot massages. The chemo area is kept pretty cool, so I always wrap up in my wonderful purple prayer shawl and my pink blanket. Darrin and I have spent the weeks writing the melodrama for the 8th graders. Actually- Darrin has written the melodrama and I have slept most of the time. Sometimes the chemo area is really quiet, and other times it's like party central. There are 20+ chairs in the infusion area, so it can get pretty busy, and some of the patients and their families are kind of loud. Some people talk on the phone or work, others sleep or read. Most people have someone with them. We counted up the days recently- I was supposed to have 12 so far- 4 treatments, 4 shots, and 4 lab days. However, I've spent over 40 days this summer in a chemo chair. I had so much trouble with the first round of drugs that I ended up going in everyday for a week after each treatment to get shots and anti-nausea meds. It's been a lot, but it ended up working- this last round of the Red Devil has been ok. I haven't had any nausea to speak of- just lots of anxiety. Not quite what any one expected, but my team has been so wonderful and so encouraging. We're all really hoping that starting this Thursday things will go much more smoothly. So- that's basically how my summer has been since I started chemo on June 19th. It has been a fascinating learning experience about a whole new world.
Monday, August 11, 2014
Sunday, August 10, 2014
Date night, sweet corn, potatoes, and ice cream
We actually got to go on a date last night!! We got all dressed up and went to the Starlight and split a tenderloin and fries, and then we went over to Granger House in Marion and saw a Mark Twain performance. I only fell asleep for a few minutes. :) I think this was the first date we've had since my diagnosis. It was very low key, and very fun. It was nice to put on a pretty dress and some makeup and feel pretty and put together.
It's been neat to see how God has brought visitors on exactly the right days. I really enjoy seeing people, but there haven't been many days when I've been up to very much conversation. This weekend was a good one for visits. I got to chat with lots of people at church this morning, too, which was nice. Though I am pretty tuckered out this afternoon.
The boys all went out to Chadima's and picked mountains of sweet corn this afternoon while I rested. I'm so excited to freeze and can it and have sweet corn all winter. We did up 4 quarts in just a little time this afternoon. It will be a several day project, but oh, so worth it!
So here's something weird on the food front- I have been craving potatoes like nothing else. I just want to eat potatoes all day. In any form. We fried up a bunch for breakfast and I couldn't stop eating them. They are full of potassium, so I'm wondering if my potassium levels are low again. The other thing I've started really enjoying is ice cream. I've never been a huge ice cream fan- I like it, but I never bought it for myself or thought of eating it as a treat. Now I want ice cream every night. This makes Darrin happy, as he is a HUGE ice cream fan. :) I'm really enjoying the kinds that have lots of chunks of chocolate and caramel and all that good stuff. I'm pretty sure there is no real nutritional value in my ice cream cravings, though. ;) My nutritionist tells me to eat things that taste good, so I'm not going to feel guilty about it. Pretty much everything else tastes like nothing, so I'm going to enjoy what I can!
Our inservice days start tomorrow at 9. We're doing SmartBoard training. I'll be interested to see if I am currently smart enough to grasp it. :)
It's been neat to see how God has brought visitors on exactly the right days. I really enjoy seeing people, but there haven't been many days when I've been up to very much conversation. This weekend was a good one for visits. I got to chat with lots of people at church this morning, too, which was nice. Though I am pretty tuckered out this afternoon.
The boys all went out to Chadima's and picked mountains of sweet corn this afternoon while I rested. I'm so excited to freeze and can it and have sweet corn all winter. We did up 4 quarts in just a little time this afternoon. It will be a several day project, but oh, so worth it!
So here's something weird on the food front- I have been craving potatoes like nothing else. I just want to eat potatoes all day. In any form. We fried up a bunch for breakfast and I couldn't stop eating them. They are full of potassium, so I'm wondering if my potassium levels are low again. The other thing I've started really enjoying is ice cream. I've never been a huge ice cream fan- I like it, but I never bought it for myself or thought of eating it as a treat. Now I want ice cream every night. This makes Darrin happy, as he is a HUGE ice cream fan. :) I'm really enjoying the kinds that have lots of chunks of chocolate and caramel and all that good stuff. I'm pretty sure there is no real nutritional value in my ice cream cravings, though. ;) My nutritionist tells me to eat things that taste good, so I'm not going to feel guilty about it. Pretty much everything else tastes like nothing, so I'm going to enjoy what I can!
Our inservice days start tomorrow at 9. We're doing SmartBoard training. I'll be interested to see if I am currently smart enough to grasp it. :)
Saturday, August 9, 2014
Sorry for the absence
I didn't realize that I haven't blogged since Tuesday! It's been a long week, spending every morning at the clinic. It was good, though- I've felt physically better this week than any of the previous weeks. It has been a really hard week emotionally, though.
The last couple of days have been really encouraging, though. Tristan and Robin Guthrie are here from Texas, and Amy and Dennis Fulkerson are here from Turkey. It was wonderful to get most of our old Monday night football group back together for dinner out last night. We just needed the VanDuzers. :(
I start back to work on Monday. My classroom is all ready to go, which is a huge relief. I've been doing some prep work with my new Bible and Social Studies curriculum, so I think I'll be ok there. I'm looking forward to seeing my kids again, too. So there are lots of positives amidst all the nervousness.
Chemo brain is definitely settling in. I've been sitting here for 5 minutes trying to remember what I want to blog about today, and I have absolutely no idea. :)
I am almost finished reading Bonhoeffer. The plot against Hitler has failed and Dietrich has been moved to the Gestapo prison. In one of his letters to his fiance, he wrote the following:
"Stifter once said, "Pain is a holy angel, who shows treasures to men which otherwise remain forever hidden; through him(pain) men have become greater than through all joys of the world."
I find that to be very profound, and very true. That is why, even though I hate this whole thing, I wouldn't trade it. Not that I want to be great or anything- but I do want to continue drawing closer to the Lord and become more like Him. I highly recommend the Bonhoeffer book. It is fascinating history and full of great theology. Metaxas is a great writer and infuses some wonderful bits of humor throughout his very readable narrative.
Poor Darrin had to deal with more toilet issues today- this time a broken wax ring. Fortunately, it wasn't a hard fix and we didn't have to call in the cavalry. :) He's such a trooper. Hopefully the rest of the day will be quiet and relaxing!
The last couple of days have been really encouraging, though. Tristan and Robin Guthrie are here from Texas, and Amy and Dennis Fulkerson are here from Turkey. It was wonderful to get most of our old Monday night football group back together for dinner out last night. We just needed the VanDuzers. :(
I start back to work on Monday. My classroom is all ready to go, which is a huge relief. I've been doing some prep work with my new Bible and Social Studies curriculum, so I think I'll be ok there. I'm looking forward to seeing my kids again, too. So there are lots of positives amidst all the nervousness.
Chemo brain is definitely settling in. I've been sitting here for 5 minutes trying to remember what I want to blog about today, and I have absolutely no idea. :)
I am almost finished reading Bonhoeffer. The plot against Hitler has failed and Dietrich has been moved to the Gestapo prison. In one of his letters to his fiance, he wrote the following:
"Stifter once said, "Pain is a holy angel, who shows treasures to men which otherwise remain forever hidden; through him(pain) men have become greater than through all joys of the world."
I find that to be very profound, and very true. That is why, even though I hate this whole thing, I wouldn't trade it. Not that I want to be great or anything- but I do want to continue drawing closer to the Lord and become more like Him. I highly recommend the Bonhoeffer book. It is fascinating history and full of great theology. Metaxas is a great writer and infuses some wonderful bits of humor throughout his very readable narrative.
Poor Darrin had to deal with more toilet issues today- this time a broken wax ring. Fortunately, it wasn't a hard fix and we didn't have to call in the cavalry. :) He's such a trooper. Hopefully the rest of the day will be quiet and relaxing!
Tuesday, August 5, 2014
Lots of tears
The past two days have been so hard. I've cried my way through them. I think I'm starting to worry about the school year and if I'll be able to handle it. I'm just so tired. And there is no joy in anything right now. I'm clinging to the hope that it WILL get better- the Lord is already there. He is sustaining me, but, boy, is it hard right now.
We've tried walking, which helps a little, but I'm not supposed to do too much of that while taking this antibiotic that can react with the steroids I'm taking. It's kind of a catch 22. The last thing I need is to rupture my Achilles. My team increased my anxiety med, but of course that just makes me more tired.
It's just so hard to look ahead and not see an end. I'll be in treatment until the new year. And then dealing with after effects for who knows how many months. And taking hormone pills for 10 years. I miss myself, if that makes any sense at all. This is such a hard fight and I am weary.
I have to go in the next few days and get fitted for a sleeve and glove to treat lymphedema. Whenever lymph nodes are removed, you run the risk of swelling due to a broken lymphatic system. This swelling can be very hard on skin and can cause cellulitis. I experienced swelling in my hand when we went camping, so now I need to have some compression to keep it from happening again. At this point I'll only have to wear the sleeve if I fly, but I'm supposed to wear the glove when doing any strenuous activity, or even just walking. This is a forever thing- lymphedema doesn't just stop happening. Hopefully we've caught it early enough that it won't be much of a problem. But it's just one more thing. One more thing that I have to deal with forever on this side of Heaven.
I know the Lord is working through this and making me more of who He wants me to be, and I'm honored that He thinks me capable of dealing with all this. I guess I really wouldn't trade it- there is nothing better than to be in the center of His will. He never, ever promised that life would be easy- just that He would help bear the burden. I know He is walking every step of this with me, and that is what gets me out of bed in the morning. But I won't deny that this is the hardest thing I've ever done. I've had plenty of tough stuff to deal with over the years- everyone has. But this is taking every ounce of courage I've got, and sometimes I think it isn't quite enough. But I have to believe that He is giving me exactly what I need when I need it. I'm clinging to that hope that better things are coming, because I know He is already there.
We've tried walking, which helps a little, but I'm not supposed to do too much of that while taking this antibiotic that can react with the steroids I'm taking. It's kind of a catch 22. The last thing I need is to rupture my Achilles. My team increased my anxiety med, but of course that just makes me more tired.
It's just so hard to look ahead and not see an end. I'll be in treatment until the new year. And then dealing with after effects for who knows how many months. And taking hormone pills for 10 years. I miss myself, if that makes any sense at all. This is such a hard fight and I am weary.
I have to go in the next few days and get fitted for a sleeve and glove to treat lymphedema. Whenever lymph nodes are removed, you run the risk of swelling due to a broken lymphatic system. This swelling can be very hard on skin and can cause cellulitis. I experienced swelling in my hand when we went camping, so now I need to have some compression to keep it from happening again. At this point I'll only have to wear the sleeve if I fly, but I'm supposed to wear the glove when doing any strenuous activity, or even just walking. This is a forever thing- lymphedema doesn't just stop happening. Hopefully we've caught it early enough that it won't be much of a problem. But it's just one more thing. One more thing that I have to deal with forever on this side of Heaven.
I know the Lord is working through this and making me more of who He wants me to be, and I'm honored that He thinks me capable of dealing with all this. I guess I really wouldn't trade it- there is nothing better than to be in the center of His will. He never, ever promised that life would be easy- just that He would help bear the burden. I know He is walking every step of this with me, and that is what gets me out of bed in the morning. But I won't deny that this is the hardest thing I've ever done. I've had plenty of tough stuff to deal with over the years- everyone has. But this is taking every ounce of courage I've got, and sometimes I think it isn't quite enough. But I have to believe that He is giving me exactly what I need when I need it. I'm clinging to that hope that better things are coming, because I know He is already there.
Sunday, August 3, 2014
A day of rest
Today I took a 2 + hour nap after lunch. Then Darrin and I went over to say hi to his parents, and have Carl check out a vehicle we're thinking about getting. It all looked pretty good to him, so we might be a two car family again soon!! That will be nice once school starts.
I've been meaning to thank every one for their prayers and update that Shiloh DID get approved for the intellectual disabilities waiver! There are still many steps to go through, but we're on the way to more services and help for him. This is a huge relief to us.
This afternoon/evening Darrin and Andy have been experimenting with pizza on the grill and Chicago style in the oven. I can't wait to try it when it's done. The only drawback- our thin crust pizzas cook in 7 minutes- the Chicago style takes 30 minutes. We're all impatient to eat! It smells so good. I hope I'll be able to taste it!
Please keep praying. If the other three cycles are an indication, the next several days are going to be pretty rough. But better things are coming!!! Also- you could pray that we'll be able to get a good schedule in place to work around in service days and the school year. Thanks!!
I've been meaning to thank every one for their prayers and update that Shiloh DID get approved for the intellectual disabilities waiver! There are still many steps to go through, but we're on the way to more services and help for him. This is a huge relief to us.
This afternoon/evening Darrin and Andy have been experimenting with pizza on the grill and Chicago style in the oven. I can't wait to try it when it's done. The only drawback- our thin crust pizzas cook in 7 minutes- the Chicago style takes 30 minutes. We're all impatient to eat! It smells so good. I hope I'll be able to taste it!
Please keep praying. If the other three cycles are an indication, the next several days are going to be pretty rough. But better things are coming!!! Also- you could pray that we'll be able to get a good schedule in place to work around in service days and the school year. Thanks!!
Saturday, August 2, 2014
A tired day
This morning we got up and Andy came with us to the Farmer's Market. It's been so fun to actually be able to go to all of them this summer. I had a shot at 10, so we hit the Market about 8:30. We got home about 10:30, and I was just done. I went up and took a several hour nap while Darrin and Andy and Luke finished the grocery shopping and Andy made some super decadent cheesecake bars we're going to have in a little while.
I did get up and help make our Italian country meal for tonight. We made Devil's chicken (seemed appropriate with the end of the Red Devil) and vegetable risotto. They are recipes from the Calabria region of Italy. We wanted to avoid the normal pasta/ pizza stuff. It all turned out great.
Then we went and got the few things we needed to round out school supplies. At the end of every school year, I tell kids if they are not going to keep perfectly good supplies, to pile them in my room. I was able to outfit my boys with everything they needed except for 1 protractor/compass set and 7 folders. Our school supplies cost us less than $10. My boys are gracious to not mind having slightly used binders and notebooks that maybe are missing a page or two. I just can't believe what kids get rid of. It's appalling, actually. I still have tons of notebooks, several binders and lots of tab dividers. I keep it all in my room for kids who need stuff through out the year.
Anyway, I'm glad we have all that sorted before I start feeling yuckier. I just need to get Luke a pair of shoes and everyone should be set for the start of the year. They've even all ready had their hair cut!
I am just so tired. I know it's because I'm back on full doses of the anti-nausea stuff, which wipes me out, and because the effects of the chemo are cumulative. I'm hoping I'll be awake enough for church in the morning- I really want to be. I have to get another shot at 11, so we'll have to leave right away again. But this is the last weekend for shots. The Taxol doesn't require one. I'm glad about that! As the writer of Hebrews says: "Better things are coming!"
I did get up and help make our Italian country meal for tonight. We made Devil's chicken (seemed appropriate with the end of the Red Devil) and vegetable risotto. They are recipes from the Calabria region of Italy. We wanted to avoid the normal pasta/ pizza stuff. It all turned out great.
Then we went and got the few things we needed to round out school supplies. At the end of every school year, I tell kids if they are not going to keep perfectly good supplies, to pile them in my room. I was able to outfit my boys with everything they needed except for 1 protractor/compass set and 7 folders. Our school supplies cost us less than $10. My boys are gracious to not mind having slightly used binders and notebooks that maybe are missing a page or two. I just can't believe what kids get rid of. It's appalling, actually. I still have tons of notebooks, several binders and lots of tab dividers. I keep it all in my room for kids who need stuff through out the year.
Anyway, I'm glad we have all that sorted before I start feeling yuckier. I just need to get Luke a pair of shoes and everyone should be set for the start of the year. They've even all ready had their hair cut!
I am just so tired. I know it's because I'm back on full doses of the anti-nausea stuff, which wipes me out, and because the effects of the chemo are cumulative. I'm hoping I'll be awake enough for church in the morning- I really want to be. I have to get another shot at 11, so we'll have to leave right away again. But this is the last weekend for shots. The Taxol doesn't require one. I'm glad about that! As the writer of Hebrews says: "Better things are coming!"
Friday, August 1, 2014
The Last of the Red Devil
Sorry I didn't write yesterday- Chemo wiped me out. I didn't feel very good when they were done, so I got an extra dose of lorazipam, which put me to sleep for an extra 2 hours. I was the last one to leave at 4:30. :) It was a 6 hour treatment day.
It actually almost didn't happen. I started running a fever on Wednesday night. We're not sure where the infection is coming from, but the team put me on a broad spectrum antibiotic. All my blood counts came back really good, so we decided to go ahead with treatment. The one kicker is that the antibiotic they put me on doesn't mix well with the steriod I have to take. It can cause the Achilles tendon to burst. Talk about a weird side effect. It is pretty rare and usually happens in old people, but I seem to get a lot of the rarer side effects. I would appreciate lots of prayer for this one. I'm supposed to avoid exercise while I'm taking it, which stinks, because our daily walks are really helpful and enjoyable. I'm on the med for 5 more days. The effects can happen up to a couple months later, so I'll really need to watch for it. GRRR. One more thing. :)
Getting out of bed yesterday was one of the hardest things I have done. I didn't feel good as it was, and knowing that I was willingly going to put more poison in my body that will make me feel awful for the next two weeks took all my courage. Then I have to remember that this poison is potentially saving my life.
Everyone reiterated again that the Taxol will be much better. I'm clinging to that!! We're due back in the clinic soon for a neupogen shot and an hour of fluids to help flush the AC out quicker. Hopefully we'll be home by lunch, not supper!
It actually almost didn't happen. I started running a fever on Wednesday night. We're not sure where the infection is coming from, but the team put me on a broad spectrum antibiotic. All my blood counts came back really good, so we decided to go ahead with treatment. The one kicker is that the antibiotic they put me on doesn't mix well with the steriod I have to take. It can cause the Achilles tendon to burst. Talk about a weird side effect. It is pretty rare and usually happens in old people, but I seem to get a lot of the rarer side effects. I would appreciate lots of prayer for this one. I'm supposed to avoid exercise while I'm taking it, which stinks, because our daily walks are really helpful and enjoyable. I'm on the med for 5 more days. The effects can happen up to a couple months later, so I'll really need to watch for it. GRRR. One more thing. :)
Getting out of bed yesterday was one of the hardest things I have done. I didn't feel good as it was, and knowing that I was willingly going to put more poison in my body that will make me feel awful for the next two weeks took all my courage. Then I have to remember that this poison is potentially saving my life.
Everyone reiterated again that the Taxol will be much better. I'm clinging to that!! We're due back in the clinic soon for a neupogen shot and an hour of fluids to help flush the AC out quicker. Hopefully we'll be home by lunch, not supper!
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