Tuesday, August 26, 2014
A short hiatus
I did get to go home on Sunday night about 5:30! Taking an unencumbered shower and sleeping in my own bed were absolute bliss. I'm going to take a couple days before I write the rest of the story. I'm finding myself with just a touch of what might be called PTSD. Every time I think about the hospital I panic a little. Last night I woke up alone on the couch and absolutely went nuts- I didn't know where I was. I'm terrified I will have to go back to the hospital if I run a fever again. Please pray that the panic will lessen and that I will be able to stay home. I see my oncology team again tomorrow (I saw them yesterday, too). If everything is good, I should be able to start my next round of chemo on Thursday- 2 weeks late. If I can't start it, it could be bad for the rest of my treatment- I don't really understand it all. Anyway- please keep the prayers coming, and I promise I'll finish the story!!
Sunday, August 24, 2014
Robin's Hospital Story Part 2
I apologize for not writing yesterday- the computer battery was dead and the cord was at home. But we're back up and running today!
After my pneumonia diagnosis, not much actually changed. I was already getting huge doses of 2 broad spectrum antibiotics, so they just kept giving me those. One of them, Vancomycin, made the IV machine alarm go off every so often, usually in the middle of the night. The IV machine thought there were air bubbles in the lines, but there weren't really. It was really annoying. Also annoying was the fact that they had to draw blood every night at midnight to make sure I didn't have too much of the drug in my blood stream. Why midnight? No idea. Probably just so I wouldn't get too much sleep. :) They also have drawn blood every morning at 5 and even one day brought in an X-ray machine and did a chest X-ray at 5 am. I'm starting to get a little grumpy about not getting much sleep. :)
A pulmonologist, Dr. Wamba, came to see me several times. She is an adorable, little tiny woman from Thailand. She was incredibly sweet and just kept touching my bald head. :) It was very cute. I also got to see the same hospitalist for several days, Dr. Sharma. She was also very kind and commented often about my good attitude and my great relationship with my husband. My third consistent Dr. is Dr. Abu Alfoul. He is also really kind. He's the infectious diseases doctor. It always made me laugh when we referred to him as the infectious doctor. (NB- I just found out that Dr. Abu Alfoul is the one in charge of whether I get to leave today or not). One other person I have to mention at this point is Andrew, the transport guy from the imaging department. He came to get me for every test I had. Finally, there was one where someone else had to take me back to my room. That tech told me that Andrew always insisted on taking care of me and was upset when he was already on a call and couldn't take me back. It was very cute. He was a really nice guy and did a great job helping me stay comfortable amidst all the back and forth.
All this gets us to Friday, when I actually started to feel human again. My parents were almost constant figures throughout Wednesday and Thursday. They were so worried. I hate causing them such stress- they should be beyond taking care of me. (though I know we're never done caring for our children). I'm just so blessed to have amazing parents, and amazing in-laws. Colleen was here pretty much everyday, too. She and I cried together a couple of times. It's such a blessing to have family in town, and to be so close to them.
Friday, Saturday and Sunday things really kept improving. We got to the point where they thought they would let me go on Monday or Tuesday. Then my kidneys decided they needed some attention. One of the CT scans required me to drink a contrast dye, which is hard on kidneys. That, combined with all the illness, antibiotics, and ibuprofen for the fevers, pushed my creatin levels all the way to 2.49. That's really high and meant my kidneys were functioning at about 25%. Enter Dr. Cogdill, the nephrologist. (Kidney doctor).
He recommended a kidney biopsy right away. He said it could just be kidney injury due to all the stuff that had been going on, but it could be much more serious. So- here comes the funniest story of the whole adventure. He was explaining how the biopsy would work, and that it would be on the CT table. He said, "You'll lay on your stomach on the table, and since you are frumpier than a skinny person. . . ." I didn't laugh right then, but oh, I cracked up later!!! "Frumpier than a skinny person!!" I immediately dubbed him Dr. Frumpy. ;) I am fully aware that I am no Twiggy, and I was not at all offended. It still makes me laugh to think of it. And there's more to come!!
But first- the biopsy. I was scared to death. I was sure it was really going to hurt. Your kidneys move every time you breathe, so it's difficult to even do a biopsy and actually get kidney tissue. What they didn't tell me was that they give you IV sedation, so I actually didn't feel anything other than the initial shot of lidocaine in my back. I was awake because I had to breathe in and out and hold my breath when they told me to. Apparently, it took 10 tries to get 3 samples, and they caused a renal hematoma (bruise on my kidney). That wasn't actually a big deal. It hasn't hurt too much, other than yesterday when it was hard to go for our second walk of the day. It doesn't hurt at all when I'm sitting or laying down, but walking jostles the kidneys around more.
Here's the second Dr. Frumpy story. He came in to talk to us about the biospy and said that the 7 misses just pulled out "some chubbiness." I told him they were free to take as much of that as they wanted. :) The biopsy ended up showing that I had acute tubular necrosis, which sounds way worse than it is. Basically, it just means that my kidneys took way too much abuse, but that they would get better on their own. I might not get back to 100%, but they should get close. The creatin number has already started dropping, though very slowly. We'll keep a really close eye on it. Lord willing, the kidneys will fix themselves up and I won't have to worry about it again. There is a possibility they won't heal as much as they should, and then I'll see Dr. Cogdill or another nephrologist and we'll figure out what to do. So- you can pray the kidneys will improve enough on their own.
Alright, this is already a very long post, so I'll save the rest of the story for tomorrow. Hopefully I'll know the end of it by then!!
After my pneumonia diagnosis, not much actually changed. I was already getting huge doses of 2 broad spectrum antibiotics, so they just kept giving me those. One of them, Vancomycin, made the IV machine alarm go off every so often, usually in the middle of the night. The IV machine thought there were air bubbles in the lines, but there weren't really. It was really annoying. Also annoying was the fact that they had to draw blood every night at midnight to make sure I didn't have too much of the drug in my blood stream. Why midnight? No idea. Probably just so I wouldn't get too much sleep. :) They also have drawn blood every morning at 5 and even one day brought in an X-ray machine and did a chest X-ray at 5 am. I'm starting to get a little grumpy about not getting much sleep. :)
A pulmonologist, Dr. Wamba, came to see me several times. She is an adorable, little tiny woman from Thailand. She was incredibly sweet and just kept touching my bald head. :) It was very cute. I also got to see the same hospitalist for several days, Dr. Sharma. She was also very kind and commented often about my good attitude and my great relationship with my husband. My third consistent Dr. is Dr. Abu Alfoul. He is also really kind. He's the infectious diseases doctor. It always made me laugh when we referred to him as the infectious doctor. (NB- I just found out that Dr. Abu Alfoul is the one in charge of whether I get to leave today or not). One other person I have to mention at this point is Andrew, the transport guy from the imaging department. He came to get me for every test I had. Finally, there was one where someone else had to take me back to my room. That tech told me that Andrew always insisted on taking care of me and was upset when he was already on a call and couldn't take me back. It was very cute. He was a really nice guy and did a great job helping me stay comfortable amidst all the back and forth.
All this gets us to Friday, when I actually started to feel human again. My parents were almost constant figures throughout Wednesday and Thursday. They were so worried. I hate causing them such stress- they should be beyond taking care of me. (though I know we're never done caring for our children). I'm just so blessed to have amazing parents, and amazing in-laws. Colleen was here pretty much everyday, too. She and I cried together a couple of times. It's such a blessing to have family in town, and to be so close to them.
Friday, Saturday and Sunday things really kept improving. We got to the point where they thought they would let me go on Monday or Tuesday. Then my kidneys decided they needed some attention. One of the CT scans required me to drink a contrast dye, which is hard on kidneys. That, combined with all the illness, antibiotics, and ibuprofen for the fevers, pushed my creatin levels all the way to 2.49. That's really high and meant my kidneys were functioning at about 25%. Enter Dr. Cogdill, the nephrologist. (Kidney doctor).
He recommended a kidney biopsy right away. He said it could just be kidney injury due to all the stuff that had been going on, but it could be much more serious. So- here comes the funniest story of the whole adventure. He was explaining how the biopsy would work, and that it would be on the CT table. He said, "You'll lay on your stomach on the table, and since you are frumpier than a skinny person. . . ." I didn't laugh right then, but oh, I cracked up later!!! "Frumpier than a skinny person!!" I immediately dubbed him Dr. Frumpy. ;) I am fully aware that I am no Twiggy, and I was not at all offended. It still makes me laugh to think of it. And there's more to come!!
But first- the biopsy. I was scared to death. I was sure it was really going to hurt. Your kidneys move every time you breathe, so it's difficult to even do a biopsy and actually get kidney tissue. What they didn't tell me was that they give you IV sedation, so I actually didn't feel anything other than the initial shot of lidocaine in my back. I was awake because I had to breathe in and out and hold my breath when they told me to. Apparently, it took 10 tries to get 3 samples, and they caused a renal hematoma (bruise on my kidney). That wasn't actually a big deal. It hasn't hurt too much, other than yesterday when it was hard to go for our second walk of the day. It doesn't hurt at all when I'm sitting or laying down, but walking jostles the kidneys around more.
Here's the second Dr. Frumpy story. He came in to talk to us about the biospy and said that the 7 misses just pulled out "some chubbiness." I told him they were free to take as much of that as they wanted. :) The biopsy ended up showing that I had acute tubular necrosis, which sounds way worse than it is. Basically, it just means that my kidneys took way too much abuse, but that they would get better on their own. I might not get back to 100%, but they should get close. The creatin number has already started dropping, though very slowly. We'll keep a really close eye on it. Lord willing, the kidneys will fix themselves up and I won't have to worry about it again. There is a possibility they won't heal as much as they should, and then I'll see Dr. Cogdill or another nephrologist and we'll figure out what to do. So- you can pray the kidneys will improve enough on their own.
Alright, this is already a very long post, so I'll save the rest of the story for tomorrow. Hopefully I'll know the end of it by then!!
Friday, August 22, 2014
Robin's Hospital Story part 1
I have several friends and relatives who have written wonderful, beautiful stories about the birth of their children. They are always titled "Sally's birth story" (obviously not always with the name Sally). :) I won't ever get to write one of those since I got my kids premade, so I thought I'd just borrow the name for my epic journey through 11.5 days in the hospital. At day 7, I was going to call it "My 7 day sojourn" but that got blown out of the water. "11 day event" just doesn't have that ring. :) Anyway- here is part one of my journey through very serious illness and back to health.
First, I realized my last post of things I am thankful for is woefully incomplete. I wrote it while under the influence of lots of narcotics, and I got interrupted a lot. The point, though, was that there was so much to be thankful for, even in the midst of all this. For example, I got 2 new pair of wonderful pajamas out of the deal! :) OK- story time.
On Tuesday, August 12th, I went to work. We had our meetings in the morning and I spent the afternoon making copies for world history and doing basic prep work. Darrin picked me up around 3. The boys were out with my dad all day, golfing and bowling and eating pizza. Around 4:15 I was at the computer and I started shivering. Before chemo, I was cold often. Then I realized that now I'm usually warm, and it was 85 degrees outside. I went upstairs to take my temperature- it was 100.1. I'm supposed to call if it hits 100.5, but I usually run a low temp, so I knew I needed to call then, before the clinic closed. The boys got home just as I was calling. Dr. Buntinas told me to go to the ER. I got to see the boys for less than 10 minutes before we left. I wouldn't see them again for over a week. That has been the absolute worst of all this.
We headed to St. Luke's, where they got me in within about 5 minutes. Everyone had to wear a mask since I'm a chemo patient. The time in the ER is hard to describe. They had to bring a nurse down from 5C (oncology) to access my port, because they thought maybe that's where the infection was coming from. They also wanted to put in a peripheral IV because they really aren't supposed to use the port- there is a risk of infection, and the PCI people recommend against anyone but them accessing it. Anyway- there was a nurse who insisted on trying to find a vein, rather than letting the lab guy (who was in the room the whole time). She couldn't get the vein and dug and dug and dug for it. I was sobbing by the time she was done and I have a HUGE bruise to show for it. They never did get anything placed in the ER- they had to send the flight nurses to my room at 11:30, and they even had a hard time. Interestingly, every time I've been poked since (somewhere around 15 times), the lab techs have never missed. Even when I was still really sick, they always hit their mark the first time.
The Resident on duty was really flummoxed as to what was going on with me, and said that people like me can go down hill really fast, which was not at all comforting. My parents came down around 7 or 7:30 and let Darrin go get some dinner. Around 10 or 11 they finally sent me up to a room on 5C- oncology and neurology. That's where I was several weeks ago when we couldn't get the vomiting under control. I was starving, since I hadn't eaten since lunch, so Darrin went out and got me a Frosty and fries. (potatoes and ice cream!) I've always liked this combination, though he thinks it's weird. He sat right at the edge of my bed and held my frosty while I lay curled up slowly dipping my fries and eating them. I will never forget the look in his eyes as we shared that moment. I tear up just thinking about it. That is why a frosty and fries has come to epitomize love to me. :)
Sometime late that night or early that morning I went into septic shock, so I was moved to the cardiac ICU. Septic shock is when your blood pressure goes really low, your temp and pulse really high, and one other thing I can't remember. I had all 4. I remember asking what it meant and a nurse replied that if it wasn't controlled, people die from it. That was scary. They took my vitals every 15 minutes for several hours, and I know there were lots of drugs involved. Tuesday night was the absolute worst night of my life. I was in so much pain and I couldn't find the nurse call button. I felt like all my joints were on fire. It was truly excruciating. I just cried and cried as loud as I could until someone finally heard me. They brought me lots of painkillers. It must have been mostly better by around 8 am, though, because I remember eating breakfast and then lunch. That was the last meal I had until Saturday.
Sometime Wednesday they brought me back to 5C. I slept through most of Wednesday, Thursday and part of Friday, all the while battling horrible headaches, nausea, vomiting and high fevers. I think the highest it got was 104.2. No one could figure out what was wrong, so I had a chest x-ray, a head CT, an abdominal CT, a whole lot of blood work, other tests I don't remember, and a nuclear medicine test on my lungs. For that one, I had to breathe in radioactive gas for 3 minutes, and then they took pictures of my lungs. Then they injected something radioactive (another praise- she hit the vein and didn't have to put in an IV), and took more pictures. That is what finally clued them in to pneumonia. They said it looked like I had ground glass in my lungs. There were lots of little crystals throughout them. So- there was answer #1. With that, I will quit for tonight and give you part two of the story tomorrow. :)
First, I realized my last post of things I am thankful for is woefully incomplete. I wrote it while under the influence of lots of narcotics, and I got interrupted a lot. The point, though, was that there was so much to be thankful for, even in the midst of all this. For example, I got 2 new pair of wonderful pajamas out of the deal! :) OK- story time.
On Tuesday, August 12th, I went to work. We had our meetings in the morning and I spent the afternoon making copies for world history and doing basic prep work. Darrin picked me up around 3. The boys were out with my dad all day, golfing and bowling and eating pizza. Around 4:15 I was at the computer and I started shivering. Before chemo, I was cold often. Then I realized that now I'm usually warm, and it was 85 degrees outside. I went upstairs to take my temperature- it was 100.1. I'm supposed to call if it hits 100.5, but I usually run a low temp, so I knew I needed to call then, before the clinic closed. The boys got home just as I was calling. Dr. Buntinas told me to go to the ER. I got to see the boys for less than 10 minutes before we left. I wouldn't see them again for over a week. That has been the absolute worst of all this.
We headed to St. Luke's, where they got me in within about 5 minutes. Everyone had to wear a mask since I'm a chemo patient. The time in the ER is hard to describe. They had to bring a nurse down from 5C (oncology) to access my port, because they thought maybe that's where the infection was coming from. They also wanted to put in a peripheral IV because they really aren't supposed to use the port- there is a risk of infection, and the PCI people recommend against anyone but them accessing it. Anyway- there was a nurse who insisted on trying to find a vein, rather than letting the lab guy (who was in the room the whole time). She couldn't get the vein and dug and dug and dug for it. I was sobbing by the time she was done and I have a HUGE bruise to show for it. They never did get anything placed in the ER- they had to send the flight nurses to my room at 11:30, and they even had a hard time. Interestingly, every time I've been poked since (somewhere around 15 times), the lab techs have never missed. Even when I was still really sick, they always hit their mark the first time.
The Resident on duty was really flummoxed as to what was going on with me, and said that people like me can go down hill really fast, which was not at all comforting. My parents came down around 7 or 7:30 and let Darrin go get some dinner. Around 10 or 11 they finally sent me up to a room on 5C- oncology and neurology. That's where I was several weeks ago when we couldn't get the vomiting under control. I was starving, since I hadn't eaten since lunch, so Darrin went out and got me a Frosty and fries. (potatoes and ice cream!) I've always liked this combination, though he thinks it's weird. He sat right at the edge of my bed and held my frosty while I lay curled up slowly dipping my fries and eating them. I will never forget the look in his eyes as we shared that moment. I tear up just thinking about it. That is why a frosty and fries has come to epitomize love to me. :)
Sometime late that night or early that morning I went into septic shock, so I was moved to the cardiac ICU. Septic shock is when your blood pressure goes really low, your temp and pulse really high, and one other thing I can't remember. I had all 4. I remember asking what it meant and a nurse replied that if it wasn't controlled, people die from it. That was scary. They took my vitals every 15 minutes for several hours, and I know there were lots of drugs involved. Tuesday night was the absolute worst night of my life. I was in so much pain and I couldn't find the nurse call button. I felt like all my joints were on fire. It was truly excruciating. I just cried and cried as loud as I could until someone finally heard me. They brought me lots of painkillers. It must have been mostly better by around 8 am, though, because I remember eating breakfast and then lunch. That was the last meal I had until Saturday.
Sometime Wednesday they brought me back to 5C. I slept through most of Wednesday, Thursday and part of Friday, all the while battling horrible headaches, nausea, vomiting and high fevers. I think the highest it got was 104.2. No one could figure out what was wrong, so I had a chest x-ray, a head CT, an abdominal CT, a whole lot of blood work, other tests I don't remember, and a nuclear medicine test on my lungs. For that one, I had to breathe in radioactive gas for 3 minutes, and then they took pictures of my lungs. Then they injected something radioactive (another praise- she hit the vein and didn't have to put in an IV), and took more pictures. That is what finally clued them in to pneumonia. They said it looked like I had ground glass in my lungs. There were lots of little crystals throughout them. So- there was answer #1. With that, I will quit for tonight and give you part two of the story tomorrow. :)
Tuesday, August 19, 2014
Thankful
I am thankful:
I am alive
For my incredible husband
That we live in Cedar Rapids with excellent medical care
That we bought all our school supplies and got the boys' bags packed 2 weeks ago
That I gave Sarah all the Girls' Night Out supplies over a week ago so she didn't have to try to get them or buy new stuff
For Frosties and french fries which will forever more epitomize the essence of love to me (I'll explain in a later post)
For friends and family who have taken care of the boys and kept them busy and fed
That my lesson plans are super organized and should be really easy to follow
For Dawn Foote, who will be following them! (Pray for her!)
For my parents who have spent so many hours up here
That I am still in the hospital
for an incredible medical team of hospitalists and nurses who have taken excellent care of me and been so very kind
for a sense of humor to endure many medical humiliations
for nurses who listen to me and try my suggestions
for Katelyn, Amanda, Tyler and BJ who cleaned up the drama room
that the internet connection in my room worked so I could LiveStream church and watch Andy share about his trip
for a great boss who is so supportive.
for friends who are praying
for a loving God who knows exactly what He is doing
for peace that passed understanding during some of the worst testing
for a myriad of little things that have worked out just as they needed to over the last 8 days.
I am alive
For my incredible husband
That we live in Cedar Rapids with excellent medical care
That we bought all our school supplies and got the boys' bags packed 2 weeks ago
That I gave Sarah all the Girls' Night Out supplies over a week ago so she didn't have to try to get them or buy new stuff
For Frosties and french fries which will forever more epitomize the essence of love to me (I'll explain in a later post)
For friends and family who have taken care of the boys and kept them busy and fed
That my lesson plans are super organized and should be really easy to follow
For Dawn Foote, who will be following them! (Pray for her!)
For my parents who have spent so many hours up here
That I am still in the hospital
for an incredible medical team of hospitalists and nurses who have taken excellent care of me and been so very kind
for a sense of humor to endure many medical humiliations
for nurses who listen to me and try my suggestions
for Katelyn, Amanda, Tyler and BJ who cleaned up the drama room
that the internet connection in my room worked so I could LiveStream church and watch Andy share about his trip
for a great boss who is so supportive.
for friends who are praying
for a loving God who knows exactly what He is doing
for peace that passed understanding during some of the worst testing
for a myriad of little things that have worked out just as they needed to over the last 8 days.
Monday, August 11, 2014
A day at the clinic
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.
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.
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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