This morning I went in for my second of 12 taxol treatments. My blood work came back mixed. My kidneys are improving slowly, which is very good news. However, my hemoglobin is pretty low and has been dropping every week for the last 3 weeks. So, Sylvia decided to order 2 units of blood for a blood transfusion. They don't do blood at PCI, so I had chemo first and then, after a quick lunch at Subway, headed over to St. Luke's infusion center. I am currently a little ways in to the first unit. The whole thing will take about 5 hours, so no work for me today. I was really glad I had planned a study hall for 6th grade and a work day for world history. I'm fervently praying that my scripts will arrive in time for drama class at 2:45. Darrin headed over to the school to take care of the drama kids and play games with them if the scripts don't arrive. I'll be here until around 5 pm. Another reason to be so very thankful for meals provided by wonderful friends and church family!
It was tough having to come back to the hospital, even knowing it's only for a few hours. Having to get a wrist band again made me panic a little, and then when I heard an IV machine beep like mine did so many times I almost lost it. I had to do some deep breathing to stay in control. I find that so odd. I talked with Sylvia about my panic and sadness a little and about the numbness in my fingers. She thinks the transfusion will help me feel physically better and thus mentally better, and she prescribed a new med that will help with the tingling and will help me sleep better. She also prescribed percoset to help with the joint pain. We decided to go with those options. If things do not improve mentally, she can give me a drug that originally was used to treat seizures, but is now used as an anti-depressant for cancer patients (and others). It's really nice to know that there are so many options. It also amazes me how much time Sylvia spends with us and how well she listens to me and Darrin. I really feel like I have choices and am in control of my health. I appreciate that a lot.
Here's the best thing in the world!! I was just visited by Sydney the therapy CAT!! She came up with her handlers and just snuggled on my lap. It was amazing! The timing was perfect- God sent her at exactly the right time. I was a little nervous about the blood transfusion, and it had just started when Sydney arrived. It took my mind right off of it. She sat with me for about 10 or 15 minutes, and it was awesome. Why couldn't she have come around when I was an in patient?? We joked about trying to smuggle one of our cats onto the floor, but we didn't figure they would take it very well. ;)
According to Lynne, 30 people have signed up to join my team for the Especially for You race in Oct. If you signed up, thanks!! I can't wait to find out who you all are! And thanks to all of you for your continued suppport! GO TEAM ROBIN!
Thursday, September 4, 2014
Wednesday, September 3, 2014
Chemo Part 2- Taxol, and going back to work!!
I started my second chemo drug last Thursday. Dr. Buntinas and Sylvia decided I was healthy enough, which was a huge praise. Going too much longer would have really messed things up, and the more you delay treatment the less effective it is.
So on Thursday last I went in and we started taxol. Actually, we had to start with an hour of fluids because my kidney numbers had gone back up a little. After a good flushing, though, they went back down and we went on to the actual chemo.
It starts with the steroid, dexamethazone, and zofran (anti-nausea). Then I got a big dose of benedryl and zantac, I think. The benedryl put me to sleep. Then they started the taxol. One of the nurses, Darcy, had to sit and literally stare at me for 15 minutes to make sure I didn't have an allergic reaction. Everyone was SURE I would with all the problems I'd had. Miraculously, I didn't!! My body handled it just fine and we didn't have to do anything different. All the chemo girls and I were amazed. :)
The steroids gave me TONS of energy for Thursday and Friday. It was great to feel so good again. But Saturday it all ended. I slept until 1 pm and then slept again from 1:30-5:30. I don't know if that will happen again this week or if it was still just recovering from being sick. I hope it was just recovering. I also slept most of Sunday. By Monday I was feeling better.
The side effects started kicking on Sunday, though. The nausea hasn't been a problem, for which I am very thankful. However, I did have really severe joint pain on Sunday night. That has lessened, and hopefully the Dr. can give me something to take when it happens again. I also have started getting the tingling in my fingertips and hands. So far I can still type relatively well, but it is getting more and more pronounced each day. I'll talk to the Dr. about that tomorrow, too. It can take months after treatment is over for the effects to go away, and sometimes they never do. That would really stink.
I went back to work on Tuesday. I was really nervous about it. The staff had planned a 'pink out' and told all the kids to wear pink to welcome me back. They had signs all over telling people to wear pink. It was really awesome. I felt very loved.
Both Darrin and Dawn Foote were there all day to help me out. We got everything figured out for each class and Dawn helped me make a bunch of copies. She did such a great job subbing with short notice and only my notes to go off of. My notes of course make sense to me, but they don't necessarily translate well. I'm so thankful all my classes moved forward and we're pretty much on track.
Today I was on my own. I did talk to Jeff about not teaching Bible this semester, and he got that changed. With Bible I would have kids 7 periods a day on M,W, and F. This way I'll have a break every day during 3rd hour. That will really help me not get too tired. Julianne Wilson is taking it over. It's great curriculum and I think she'll do a great job and the girls will enjoy her.
Going back to work was the best thing I could have done. It has helped my fatigue lessen and given me purpose. It's great to be around the kids again and teaching the things I love. I have chemo again tomorrow, so prayers for that and no advancement of side effects. Thanks! GO TEAM ROBIN!!
So on Thursday last I went in and we started taxol. Actually, we had to start with an hour of fluids because my kidney numbers had gone back up a little. After a good flushing, though, they went back down and we went on to the actual chemo.
It starts with the steroid, dexamethazone, and zofran (anti-nausea). Then I got a big dose of benedryl and zantac, I think. The benedryl put me to sleep. Then they started the taxol. One of the nurses, Darcy, had to sit and literally stare at me for 15 minutes to make sure I didn't have an allergic reaction. Everyone was SURE I would with all the problems I'd had. Miraculously, I didn't!! My body handled it just fine and we didn't have to do anything different. All the chemo girls and I were amazed. :)
The steroids gave me TONS of energy for Thursday and Friday. It was great to feel so good again. But Saturday it all ended. I slept until 1 pm and then slept again from 1:30-5:30. I don't know if that will happen again this week or if it was still just recovering from being sick. I hope it was just recovering. I also slept most of Sunday. By Monday I was feeling better.
The side effects started kicking on Sunday, though. The nausea hasn't been a problem, for which I am very thankful. However, I did have really severe joint pain on Sunday night. That has lessened, and hopefully the Dr. can give me something to take when it happens again. I also have started getting the tingling in my fingertips and hands. So far I can still type relatively well, but it is getting more and more pronounced each day. I'll talk to the Dr. about that tomorrow, too. It can take months after treatment is over for the effects to go away, and sometimes they never do. That would really stink.
I went back to work on Tuesday. I was really nervous about it. The staff had planned a 'pink out' and told all the kids to wear pink to welcome me back. They had signs all over telling people to wear pink. It was really awesome. I felt very loved.
Both Darrin and Dawn Foote were there all day to help me out. We got everything figured out for each class and Dawn helped me make a bunch of copies. She did such a great job subbing with short notice and only my notes to go off of. My notes of course make sense to me, but they don't necessarily translate well. I'm so thankful all my classes moved forward and we're pretty much on track.
Today I was on my own. I did talk to Jeff about not teaching Bible this semester, and he got that changed. With Bible I would have kids 7 periods a day on M,W, and F. This way I'll have a break every day during 3rd hour. That will really help me not get too tired. Julianne Wilson is taking it over. It's great curriculum and I think she'll do a great job and the girls will enjoy her.
Going back to work was the best thing I could have done. It has helped my fatigue lessen and given me purpose. It's great to be around the kids again and teaching the things I love. I have chemo again tomorrow, so prayers for that and no advancement of side effects. Thanks! GO TEAM ROBIN!!
Robin's Hospital Stay part 3
OK- I think I'm finally ready to write the end of the hospital adventure. There isn't actually a lot more to tell. Dr. Abu Alfoul couldn't figure out why I still had some fevers, so he ordered cultures off my port and from a peripheral location (my hand). They had to draw them twice from my hand because he wanted them to be from the same time. They first drew off my hand at 5 am, so they had to do it again around noon. Then we just had to wait. I kept feeling better and better, but we had to wait at least 24 hours. Unfortunately, the culture off my port got contaminated with staph, so then we had to wait another 24 hours. Dr. Frumpy came by and told me I should just have the port taken out if anything else came back positive. Better that than have to wait longer to start chemo again. I agreed- his logic seemed sound. However, praise the Lord, the rest of the cultures came back negative. I finally got to go home at 5:45 on Sunday evening. 12 days and 1 hour since I had gone in. The nurses stood up and cheered as I left. :)
The whole experience was really traumatic. I often didn't know what was going on and I was really, really sick for several of those days. Every person I dealt with was absolutely wonderful and kind, but it was a very difficult experience. I could shower, but we had to tape up my port so it didn't get wet, so I never really felt clean. I was hooked up to an IV machine, so I couldn't do anything or go anywhere easily. I was scared and lonely and confused much of the time. I'm not sure what God's purpose was, though I know He has one. I had a couple of good talks with one or two of the nurses, so that was positive. I tried really hard to be a good patient and treat all my caregivers with respect and thankfulness. Hopefully that will have an effect on them. Susan Johnson made me wonderful signs with verses of encouragement on them, and many people commented on them. I'm going to hope that seeds were planted and people were positively influenced.
I still have moments of freaking out about the whole thing, though they are fewer and farther between. As I continue to feel better my fear is lessening. The Lord has been very good to us and I am very thankful to be healthy-(ish) again. In my next post I'll talk about the new round of chemo. Thanks for your continued prayers!!
The whole experience was really traumatic. I often didn't know what was going on and I was really, really sick for several of those days. Every person I dealt with was absolutely wonderful and kind, but it was a very difficult experience. I could shower, but we had to tape up my port so it didn't get wet, so I never really felt clean. I was hooked up to an IV machine, so I couldn't do anything or go anywhere easily. I was scared and lonely and confused much of the time. I'm not sure what God's purpose was, though I know He has one. I had a couple of good talks with one or two of the nurses, so that was positive. I tried really hard to be a good patient and treat all my caregivers with respect and thankfulness. Hopefully that will have an effect on them. Susan Johnson made me wonderful signs with verses of encouragement on them, and many people commented on them. I'm going to hope that seeds were planted and people were positively influenced.
I still have moments of freaking out about the whole thing, though they are fewer and farther between. As I continue to feel better my fear is lessening. The Lord has been very good to us and I am very thankful to be healthy-(ish) again. In my next post I'll talk about the new round of chemo. Thanks for your continued prayers!!
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.
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