Yesterday was another great day. We actually accomplished stuff and really enjoyed our day. Of course, I'm sitting here trying to remember what we did, and I have absolutely no idea. But I know it was a good day. :)
Today I woke up with a massive headache I haven't really been able to shake. I might have done too much on Monday and Tuesday. And maybe my body just knows chemo is coming tomorrow and is already rebelling.
I went to school for a little bit today, met with Jeff, and looked at some calendar stuff to try to get my head around the fall. I really think one of the Lord's main purposes is to get me to quit being a control freak. It frustrates me to no end that I cannot make any solid plans about anything. Usually by this point I've already started making copies and writing out lesson plans. I have to remember that school will still happen and my students will still get educated. My co-workers are absolutely the best people in the world, and my students bring me no end of joy. I couldn't ask for a better situation.
Did I mention that the other day one of the senior boys dropped by with flowers? It was the sweetest thing ever, and they are really beautiful. I definitely have the best job ever. :)
I'm starting to find it hard to track long conversations. I think my writing is probably taking a hit, too. It's getting harder and harder to be coherent and remember what I want to say. Yesterday I was on the phone and couldn't come up with Darrin's name. :) So- if you talk to me and I seem really random or disengaged, I apologize. It is quite an effort, and it leaves me exhausted. And the fatigue is supposed to get worse as treatment goes on, especially with radiation.
I am still managing to enjoy a really great book. I'm reading Bonhoeffer, by Eric Metaxas. It is a biography of Dietrich Bonhoeffer. He was a German pastor who was involved in the big plot to assassinate Hitler. The book focuses on the fact that Christians have to critically evaluate what we believe and why we believe it, and make sure that what we conclude matches with scripture. It is as timely now as it was 70 years ago. We have a new curriculum for Bible class this year from Summit Ministries. It argues pretty much the same thing. We have to know what we believe and why. I love it when separate things come together to make one unifying point. Of course, it's funny that I am reading and thinking so much about intellectual stuff when my intellect is stuck in jello. :)
Tomorrow is the last of the bad chemo. Prayers are appreciated! I don't have to be there until 10:30, so it will be a long day. Go, Team!
Wednesday, July 30, 2014
Monday, July 28, 2014
A great day
Today was really, really good. I have mostly felt good all day. We slept very late- almost embarrassingly so. I guess we both needed the rest. It was a day of wonderful visitors and answered prayers.
I was actually awake very early for awhile. While I was trying to get back to sleep I was praying about having more focused, quality time in the Word. Sometimes I feel like I don't do a very good job of being deliberate about what I am studying. I prayed for more direction and then went back to sleep. Later in the morning, Samantha Ulmer stopped by and brought me a beautiful devotional book. It was a perfect answer to prayer, just hours after I prayed about it. The section I was reading today pointed me to Hebrews 6. It was just so perfect. The chapter starts talking about leaving behind elementary teachings and not grieving the Holy Spirit. It gets more positive as the author continues. Here's the text starting at verse 9:
"Even though we speak like this, dear friends, we are confident of better things in your case- things that accompany salvation. God is not unjust: he will not forget your work and the love you have shown him as you have helped his people and continue to help them. We want each of you to show this same diligence to the very end, in order to make your hope sure. We do not want you to become lazy, but to imitate those who through faith and patience inherit what has been promised. "
Verse 19 continues: "We have this hope as an anchor for the soul, firm and secure. It enters the inner sanctuary behind the curtain, where Jesus, who went before us, has entered on our behalf."
I was just so encouraged by these words today. It was exactly what my soul needed to hear and be reminded of. I just love that- "We are confident of better things in your case." I don't want to take anything out of context, but those words just leaped off the page at me today.
And then the day just kept being great! My dear friend Shannon is in town from New Hampshire for a couple days, so I got to spend time with her this afternoon, and then the Lillis' stopped by this evening. And yesterday, some other dear friends dropped off incredible gifts for the boys (Legos, of course!) and gift cards for Chick-fil-A. (Luke told me I should get cancer more often so he can get more Legos!) ;) We also got a meatball and cake drop, which also thrilled the hearts of my boys. :) And a lovely couple from church dropped off a meal tonight that we got to enjoy outside in the beautiful weather. It has been such a day of blessings. I realized this evening that I didn't even take my midday medicines today- I felt good and didn't need them. I'm so thankful. The weekend was pretty tough, and I know I have 2 more weeks of unpleasantness coming before I'm done, so it has been a very sweet day. I had been missing people, even though I didn't feel like seeing anyone the last few days. Today's timing was just perfect and such a gift. Lord willing there will be a couple more good days before we start all over again. What a change from Sunday morning when I felt like I would never feel good again. Praise be to the Lord of new days.
I was actually awake very early for awhile. While I was trying to get back to sleep I was praying about having more focused, quality time in the Word. Sometimes I feel like I don't do a very good job of being deliberate about what I am studying. I prayed for more direction and then went back to sleep. Later in the morning, Samantha Ulmer stopped by and brought me a beautiful devotional book. It was a perfect answer to prayer, just hours after I prayed about it. The section I was reading today pointed me to Hebrews 6. It was just so perfect. The chapter starts talking about leaving behind elementary teachings and not grieving the Holy Spirit. It gets more positive as the author continues. Here's the text starting at verse 9:
"Even though we speak like this, dear friends, we are confident of better things in your case- things that accompany salvation. God is not unjust: he will not forget your work and the love you have shown him as you have helped his people and continue to help them. We want each of you to show this same diligence to the very end, in order to make your hope sure. We do not want you to become lazy, but to imitate those who through faith and patience inherit what has been promised. "
Verse 19 continues: "We have this hope as an anchor for the soul, firm and secure. It enters the inner sanctuary behind the curtain, where Jesus, who went before us, has entered on our behalf."
I was just so encouraged by these words today. It was exactly what my soul needed to hear and be reminded of. I just love that- "We are confident of better things in your case." I don't want to take anything out of context, but those words just leaped off the page at me today.
And then the day just kept being great! My dear friend Shannon is in town from New Hampshire for a couple days, so I got to spend time with her this afternoon, and then the Lillis' stopped by this evening. And yesterday, some other dear friends dropped off incredible gifts for the boys (Legos, of course!) and gift cards for Chick-fil-A. (Luke told me I should get cancer more often so he can get more Legos!) ;) We also got a meatball and cake drop, which also thrilled the hearts of my boys. :) And a lovely couple from church dropped off a meal tonight that we got to enjoy outside in the beautiful weather. It has been such a day of blessings. I realized this evening that I didn't even take my midday medicines today- I felt good and didn't need them. I'm so thankful. The weekend was pretty tough, and I know I have 2 more weeks of unpleasantness coming before I'm done, so it has been a very sweet day. I had been missing people, even though I didn't feel like seeing anyone the last few days. Today's timing was just perfect and such a gift. Lord willing there will be a couple more good days before we start all over again. What a change from Sunday morning when I felt like I would never feel good again. Praise be to the Lord of new days.
Sunday, July 27, 2014
Turning the corner
I finally started actually feeling better about 4 this afternoon. I'm hoping the next few days will be good before my last A/C treatment on Thursday. I"m really dreading it, but also looking forward to it being the last one. I didn't go to church this morning, which bummed me out, but I do think it helped me start to feel better later. We took a walk and got some sunshine- two things that really are important for mood and to battle fatigue. When I woke up this morning, I was sad and angry. I know that is part of the grieving process, and dealing with cancer really is dealing with grief and loss. I know church is always beneficial and I hate to miss the message and the music and the fellowship, but today it was the right decision to stay home and deal with my emotions.
Throughout the day we were blessed by several friends in several ways. God just keeps pouring out His blessings through all of you. Thanks. We love and appreciate you all so much!
Throughout the day we were blessed by several friends in several ways. God just keeps pouring out His blessings through all of you. Thanks. We love and appreciate you all so much!
Saturday, July 26, 2014
Green beans
I felt pretty good when I woke up this morning, so I got up and made biscuits and gravy for breakfast. I don't know why I continue to bother with cooking or eating- nothing tastes good. But I enjoy the process enough that it is worth it, I guess. We had somewhere around 6 or 7 gallons of green beans to deal with today. We all helped with the snapping and cleaning, and then Darrin experimented with some new recipes. He froze 2 gallons worth, and then made some spicy dilly beans that will be fun to try in a couple weeks. We still have several gallons more to play with tomorrow. It totally did me in, though, and I spent most of the day sleeping, watching tv and trying (unsuccessfully) not to throw up.
We are experimenting more with the umami flavor. It seems to be the only flavor that I can actually taste and sort of enjoy. Umami is that other taste- not sweet, more than savory- like bacon. We have a lentil and rice dish that we like a lot for breakfast that Darrin is making for tomorrow. We're adding some salmon to it, and the cats are going nuts. :) It will be interesting to see how it tastes in the morning.
I was hugely humbled and honored today to get an email message from Father Raphael Abraham. He has asked Archbishop Chrysostomos to pray for me, and the Archbishop has asked the monks at his monastery to intercede on my behalf. I was privileged several years ago to have the Archbishop as a guest speaker in my world history class. He is a brilliant and fascinating man. I am just so humbled that so many people are praying for me.
Sometimes I feel unworthy of this struggle. Why has God chosen me to go through this? I don't mean why me? in a negative way, but in a positive way. Clearly God has a purpose. Am I fulfilling that purpose? Am I wasting an opportunity when I spend the day on the couch watching TV? Or is that part of what I am learning- that it is OK to admit weakness? I am definitely learning that I can't push too hard or I have no choice about being in bed or on the couch. Maybe it's helping me let go of control. I have always been a strong person with a strong personality. (I am a Cline, after all!!) ;) I've been very independent all my life. I lived happily on my own until I was 33. My husband has been such an incredible influence- he makes it very easy to be a submissive wife in the very best sense of the word. But I know I have my independent, stubborn, wants to be in control streak. Cancer has taken away much of that control. I am learning now to trust that every day will bring its own challenges and I have to trust and rely on God and on Darrin to help me get through each day. We can make a tentative plan in the morning that might get thrown out the window by noon. But I know that as long as we are together and we are keeping our focus on God and on each other, we'll get through each day, drawing closer together all the time. I wouldn't trade that for anything. Well, maybe for some good tasting food. . . . :)
We are experimenting more with the umami flavor. It seems to be the only flavor that I can actually taste and sort of enjoy. Umami is that other taste- not sweet, more than savory- like bacon. We have a lentil and rice dish that we like a lot for breakfast that Darrin is making for tomorrow. We're adding some salmon to it, and the cats are going nuts. :) It will be interesting to see how it tastes in the morning.
I was hugely humbled and honored today to get an email message from Father Raphael Abraham. He has asked Archbishop Chrysostomos to pray for me, and the Archbishop has asked the monks at his monastery to intercede on my behalf. I was privileged several years ago to have the Archbishop as a guest speaker in my world history class. He is a brilliant and fascinating man. I am just so humbled that so many people are praying for me.
Sometimes I feel unworthy of this struggle. Why has God chosen me to go through this? I don't mean why me? in a negative way, but in a positive way. Clearly God has a purpose. Am I fulfilling that purpose? Am I wasting an opportunity when I spend the day on the couch watching TV? Or is that part of what I am learning- that it is OK to admit weakness? I am definitely learning that I can't push too hard or I have no choice about being in bed or on the couch. Maybe it's helping me let go of control. I have always been a strong person with a strong personality. (I am a Cline, after all!!) ;) I've been very independent all my life. I lived happily on my own until I was 33. My husband has been such an incredible influence- he makes it very easy to be a submissive wife in the very best sense of the word. But I know I have my independent, stubborn, wants to be in control streak. Cancer has taken away much of that control. I am learning now to trust that every day will bring its own challenges and I have to trust and rely on God and on Darrin to help me get through each day. We can make a tentative plan in the morning that might get thrown out the window by noon. But I know that as long as we are together and we are keeping our focus on God and on each other, we'll get through each day, drawing closer together all the time. I wouldn't trade that for anything. Well, maybe for some good tasting food. . . . :)
Friday, July 25, 2014
Down from the Mountain
The last couple of days were pretty good. No vomiting at all, and just quick appointments for a shot on Wednesday and Thursday. Thursday Darrin told stories in Altoona, so he and the boys took off for Adventureland for the day. I got to hang out with my parents. It was a very nice day. We had lunch at Bata's down in New Bo. It's really, really good. I had a burger that actually had flavor. :)
I'm really glad the boys could go to Adventureland. I was really bummed to not go, but I wouldn't have had any fun and I would have slowed down everyone else. They did bring me a funnel cake, so it was all ok in the end! ;)
Today I felt good enough to run several errands. We turned in all our financial aid applications and procured a building permit to put walls in our basement to make a laundry room/bathroom space. Unfortunately, we were out too long and I didn't get my meds on time, so I spent the late afternoon with some pretty bad nausea and vomiting. We were hoping to go see a show at the Hiawatha Library tonight, but I don't think I should probably go, both because of the nausea, and I really am supposed to be avoiding crowds for at least another day or two.
I'm still working on evaluating my expectations for myself. I'm trying to accomplish one good thing each day. On Wednesday I worked on meal plans and a shopping list. On Thursday my parents took me to do the grocery shopping, and today we took care of financial stuff. Tomorrow maybe we'll work together and get the house clean.
Yesterday we had a good appointment with Sylvia. We're getting to the end of the A/C regimen, so I had some questions about the next step. The nausea will hopefully get a lot better. However, the Taxol causes peripheral neuropathy- tingling in hands and feet. This tingling can be a permanent thing. I will also most likely lose my fingernails and toenails and have lots of skin issues. The fatigue will also intensify.
Interestingly, the Taxol is made from Pacific Yew Trees. Because of this, about 20 percent of patients have an allergic reaction to it. It's not terribly serious- they treat it with Benadryl, but it could affect whether or not I can teach at all on chemo days. So many things are so up in the air. That's hard for me. I'm a planner. I like knowing what is coming up and being able to plan for contingencies. I have to be back at school in less than 3 weeks, which really seems soon. The kids come back in less than 4 weeks. The summer has just disappeared.
I'm concerned about how the fall is going to go. I think I have my plays all picked out for the junior high and high school, so that is a big relief. It sometimes takes me months to find a show I like, so it's a huge blessing that I've found a couple all ready. You know, it just all comes back to trusting the Lord to provide exactly what I need when I need it. I'm confident that He will. I just need to remind myself of it regularly.
Andy is off to a high school party tonight. I can't believe he is almost a sophomore. It's been fun being able to give the boys more and more freedom this summer. They are rising to responsibility and have been so great to be around. It is amazing how much stuff there is to do with youth group and get togethers and stuff. I'll be glad when Andy gets his license in February. Hopefully we'll have a second car by then!
Alright- enough rambling for tonight! Thanks for your prayers and sticking with me through all this!!
I'm really glad the boys could go to Adventureland. I was really bummed to not go, but I wouldn't have had any fun and I would have slowed down everyone else. They did bring me a funnel cake, so it was all ok in the end! ;)
Today I felt good enough to run several errands. We turned in all our financial aid applications and procured a building permit to put walls in our basement to make a laundry room/bathroom space. Unfortunately, we were out too long and I didn't get my meds on time, so I spent the late afternoon with some pretty bad nausea and vomiting. We were hoping to go see a show at the Hiawatha Library tonight, but I don't think I should probably go, both because of the nausea, and I really am supposed to be avoiding crowds for at least another day or two.
I'm still working on evaluating my expectations for myself. I'm trying to accomplish one good thing each day. On Wednesday I worked on meal plans and a shopping list. On Thursday my parents took me to do the grocery shopping, and today we took care of financial stuff. Tomorrow maybe we'll work together and get the house clean.
Yesterday we had a good appointment with Sylvia. We're getting to the end of the A/C regimen, so I had some questions about the next step. The nausea will hopefully get a lot better. However, the Taxol causes peripheral neuropathy- tingling in hands and feet. This tingling can be a permanent thing. I will also most likely lose my fingernails and toenails and have lots of skin issues. The fatigue will also intensify.
Interestingly, the Taxol is made from Pacific Yew Trees. Because of this, about 20 percent of patients have an allergic reaction to it. It's not terribly serious- they treat it with Benadryl, but it could affect whether or not I can teach at all on chemo days. So many things are so up in the air. That's hard for me. I'm a planner. I like knowing what is coming up and being able to plan for contingencies. I have to be back at school in less than 3 weeks, which really seems soon. The kids come back in less than 4 weeks. The summer has just disappeared.
I'm concerned about how the fall is going to go. I think I have my plays all picked out for the junior high and high school, so that is a big relief. It sometimes takes me months to find a show I like, so it's a huge blessing that I've found a couple all ready. You know, it just all comes back to trusting the Lord to provide exactly what I need when I need it. I'm confident that He will. I just need to remind myself of it regularly.
Andy is off to a high school party tonight. I can't believe he is almost a sophomore. It's been fun being able to give the boys more and more freedom this summer. They are rising to responsibility and have been so great to be around. It is amazing how much stuff there is to do with youth group and get togethers and stuff. I'll be glad when Andy gets his license in February. Hopefully we'll have a second car by then!
Alright- enough rambling for tonight! Thanks for your prayers and sticking with me through all this!!
Tuesday, July 22, 2014
Another good day!!
It seems we might have hit on the solution!! Fluids every morning and a strict every 4 hour dose of anti-nausea drugs. I didn't get sick at all today!!!!!!!!! :)We actually ran a few errands and I even cooked supper for the first time in weeks and weeks. We are up to Ireland in our food journey around the world, so I made sausage rolls in phyllo dough (a street food), colcannon (mashed potatoes with kale and onion- super yummy!) and steak and Guinness pie. It was all really fun to do. I know it didn't taste as good to me as it did for everyone else, but I still enjoyed just being about to cook it!
I got to check in with one of my favorite doctors today. Dr. Silber has been treating me for ulcerative colitis since I was 18. He is just such a great guy and a fabulous doctor. He told me dealing with cancer was probably a good enough excuse to not have to have a colonoscopy for another year or so. That was welcome news! I usually have to have one every 12-18 months. I had one last October, so I should be due again within the next 6 months. But now I don't have to have one for awhile!! Yet another small perk. I'll take what I can get, right?? :)
Even though I am feeling better today, I am a little discouraged. I'd been working really hard on losing weight before the cancer. I'd dropped 15 pounds. 8 of them have come back with all the steroids I'm having to take. It's very frustrating. My whole medical team assures me it will get better once the steroids are done, but it is discouraging to lose so much progress through no fault of my own. I know getting healthy is way more than a number on the scale, but I do have to work to keep myself from being bothered by it. It is amazing how Satan's lies about appearance are so very pervasive that it bothers me even when I know I am doing everything possible to be as healthy as I can be through this process. There's my little rant. I'd appreciate prayers for contentment and peace about it. Darrin of course is wonderful and always says the scale reads 'perfect'. :)
I'm just so thankful for a good day today. Lord willing, the rest of this cycle will go well and I'll survive the Red Devil!! Go TEAM!
I got to check in with one of my favorite doctors today. Dr. Silber has been treating me for ulcerative colitis since I was 18. He is just such a great guy and a fabulous doctor. He told me dealing with cancer was probably a good enough excuse to not have to have a colonoscopy for another year or so. That was welcome news! I usually have to have one every 12-18 months. I had one last October, so I should be due again within the next 6 months. But now I don't have to have one for awhile!! Yet another small perk. I'll take what I can get, right?? :)
Even though I am feeling better today, I am a little discouraged. I'd been working really hard on losing weight before the cancer. I'd dropped 15 pounds. 8 of them have come back with all the steroids I'm having to take. It's very frustrating. My whole medical team assures me it will get better once the steroids are done, but it is discouraging to lose so much progress through no fault of my own. I know getting healthy is way more than a number on the scale, but I do have to work to keep myself from being bothered by it. It is amazing how Satan's lies about appearance are so very pervasive that it bothers me even when I know I am doing everything possible to be as healthy as I can be through this process. There's my little rant. I'd appreciate prayers for contentment and peace about it. Darrin of course is wonderful and always says the scale reads 'perfect'. :)
I'm just so thankful for a good day today. Lord willing, the rest of this cycle will go well and I'll survive the Red Devil!! Go TEAM!
Monday, July 21, 2014
A relatively good day!
We started the morning with more nausea and vomiting, but I went in for an hour of fluids and such, and the rest of the day has been much better. We actually went out and did a few things. We picked plums from a friend's plum tree, played a game of Cities and Knights, and went shopping for some things for the boys tonight. I'm moving pretty slow, but at least I could be out!
I also got more of our financial aid info together for the Surgery Center and ended up owing nothing to them for my lumpectomy!! That was a HUGE blessing. There are plenty other bills still coming, but that one was pretty major. I almost cried I was so blown away by God's provision.
I'm trying to decide which is better (or worse)- being nauseous all the time but having my brain fully functional, or feeling decent but having trouble stringing thoughts together. I guess right now it's better to feel decent and not be in the hospital. And my kids can laugh at me for getting confused and using the wrong words! :) And they definitely had an advantage over me in Cities and Knights. Though, when we quit for dinner, Andy I were tied for first, so I guess my brain is at least working a little!!
I also got more of our financial aid info together for the Surgery Center and ended up owing nothing to them for my lumpectomy!! That was a HUGE blessing. There are plenty other bills still coming, but that one was pretty major. I almost cried I was so blown away by God's provision.
I'm trying to decide which is better (or worse)- being nauseous all the time but having my brain fully functional, or feeling decent but having trouble stringing thoughts together. I guess right now it's better to feel decent and not be in the hospital. And my kids can laugh at me for getting confused and using the wrong words! :) And they definitely had an advantage over me in Cities and Knights. Though, when we quit for dinner, Andy I were tied for first, so I guess my brain is at least working a little!!
Sunday, July 20, 2014
Tranquility
Yesterday was so rough emotionally. Today I am feeling better, emotionally, at least. I have gotten onto a very strict every four hour regimen of popping pills. This morning when I went in for my shot, Dr. Warren explained that I can take so many different things at once because they are all targeting different parts of my brain. Two of them are tranquilizers that work to shut down key receptors. No wonder I've been feeling pretty tranquil. :) I hate the thought that I am not functioning at full capacity mentally, but I guess it's better to be a little mellow than in the hospital. I still haven't had a vomit free day, but hopefully that is coming. I'm back to the clinic tomorrow morning for more fluids to try to flush the A/C out as quickly as possible.
I missed most of Sean's message this morning since I had to get my shot at 10, but I was there for the tennis ball illustration, which I just loved. It was all about priorities- making sure the big ones are taken care of before worrying about the little ones. That if you get your priorities in the right order, there is room for everything. It was a great illustration. Everyday I have to evaluate what the priorities are for that day. Usually it involves accomplishing one or maybe 2 small tasks, and spending time with my family as long as I can stay awake.
Today everyone worked really hard to clean the house. That was a HUGE relief to me. It's amazing how quickly things pile up!
I can tell you have been praying for me. The nausea hasn't completely resolved, but it has been a better day than yesterday, and I'm very thankful for that!! May God bless you all so much for the help and encouragement you've been to me and my family!! GO TEAM!
I missed most of Sean's message this morning since I had to get my shot at 10, but I was there for the tennis ball illustration, which I just loved. It was all about priorities- making sure the big ones are taken care of before worrying about the little ones. That if you get your priorities in the right order, there is room for everything. It was a great illustration. Everyday I have to evaluate what the priorities are for that day. Usually it involves accomplishing one or maybe 2 small tasks, and spending time with my family as long as I can stay awake.
Today everyone worked really hard to clean the house. That was a HUGE relief to me. It's amazing how quickly things pile up!
I can tell you have been praying for me. The nausea hasn't completely resolved, but it has been a better day than yesterday, and I'm very thankful for that!! May God bless you all so much for the help and encouragement you've been to me and my family!! GO TEAM!
Saturday, July 19, 2014
Down for the count
Well, my 4 hour nap kind of put the kibosh on the beach today. After my shot, we hit the Farmer's Market for a while, and then I was completely done. I can't get up without being really nauseous. I'm taking all 4 of my anti-nausea drugs exactly on time and I have my motion sickness patch in place, but it doesn't seem to be working. Or maybe it would just be way worse than it is, so they are helping some but not enough. I really don't want to have to go to the hospital for more infusions, so I am just staying as still as possible. I see the Dr. again at 10 Sunday morning for another shot. If it's still not better, I'll talk with him and see what he wants me to do.
Andy and Luke are so wonderfully sympathetic. It must be hard watching me feel this bad and be retching in the sink all the time. Andy has been gone for a lot of the worst days, so he is just now kind of getting a feel for all this. They are just being brilliant, though. Andy has his apron on and is grilling ribs, bacon wrapped asparagus and sweet corn for supper. I hope I can eat it!!
Even though this is so wretched and way worse than I thought it was going to be, I'm still thankful. God has been teaching me so much about relying on Him and trusting Him even when it is hard. And I am humbled to know that my words have encouraged others. God is ALWAYS faithful, not matter our circumstances. He never, ever, ever leaves or forsakes us. He has a perfect plan. It isn't just me He is working on- it's my whole family. We are all learning and growing together. And I wouldn't trade that for anything.
Andy and Luke are so wonderfully sympathetic. It must be hard watching me feel this bad and be retching in the sink all the time. Andy has been gone for a lot of the worst days, so he is just now kind of getting a feel for all this. They are just being brilliant, though. Andy has his apron on and is grilling ribs, bacon wrapped asparagus and sweet corn for supper. I hope I can eat it!!
Even though this is so wretched and way worse than I thought it was going to be, I'm still thankful. God has been teaching me so much about relying on Him and trusting Him even when it is hard. And I am humbled to know that my words have encouraged others. God is ALWAYS faithful, not matter our circumstances. He never, ever, ever leaves or forsakes us. He has a perfect plan. It isn't just me He is working on- it's my whole family. We are all learning and growing together. And I wouldn't trade that for anything.
Friday, July 18, 2014
Chemo round 3
Thursday was chemo round 3. It was pretty uneventful, as chemo treatments go. I almost got one of the wrong anti-nausea drugs, but my nurse Wendy caught it before she administered it, so all was saved. I felt pretty decent the rest of the day. Sylvia is trying a couple new things again this time- I'll take some steroids every day for 11 days, instead of just for 3. I also am going in twice just to get fluids, and I'm scheduled to come in all of next week just in case I need to. Then we have our plans in place and can back off from them if necessary.
Unfortunately, the feeling good didn't last long. It all caught up with me this morning. I hadn't been up for more than 15 minutes when I started vomiting. I had an appointment already scheduled to go in for more fluids to try the flush the bad stuff as quickly as possible, so I sat very still until it was time to go in at noon. Every time I got up, I threw up, so I didn't get up much. So, instead of just fluids I also got three more anti-nausea drips. But I also got an extra warm blanket and was able to take a two hour nap. :) The chemo chairs are pretty comfortable. They recline all the way back and have heat and massage.
I'm home now and feeling pretty good. The steroid helps with nausea, and since it's a steroid, it helps with energy levels, too. That's kind of nice. We're hoping to feel good enough tomorrow to go to the beach and have a picnic. I have to go in for a shot at 9, but Lord willing, the rest of the day will go well.
I am definitely learning to take one day at a time and to really appreciate those hours that I feel good. We're getting pretty good at taking advantage of those times, and figuring out when they might be. So far, I've felt good the Tuesday evening and Wednesday right before a treatment. And there are other sporadic hours when all the drugs are working in harmony.
We're halfway done with the A/C cycle. Yesterday Darrin commented that it's all downhill from here. I told him we could take that 2 different ways! Darrin has been such a great supporter and advocate. He helps me remember details and takes care of so many things. When I'm awake at treatment, we've been enjoying each other's company immensely. We've started working on the 8th grade melodrama for this year. No spoilers, but it should be really fun. Our adjusted expectations for the summer are going well.
Thanks again for your prayers and support!! One month of chemo down, 4 to go! And then radiation. :)
GO TEAM ROBIN!
Unfortunately, the feeling good didn't last long. It all caught up with me this morning. I hadn't been up for more than 15 minutes when I started vomiting. I had an appointment already scheduled to go in for more fluids to try the flush the bad stuff as quickly as possible, so I sat very still until it was time to go in at noon. Every time I got up, I threw up, so I didn't get up much. So, instead of just fluids I also got three more anti-nausea drips. But I also got an extra warm blanket and was able to take a two hour nap. :) The chemo chairs are pretty comfortable. They recline all the way back and have heat and massage.
I'm home now and feeling pretty good. The steroid helps with nausea, and since it's a steroid, it helps with energy levels, too. That's kind of nice. We're hoping to feel good enough tomorrow to go to the beach and have a picnic. I have to go in for a shot at 9, but Lord willing, the rest of the day will go well.
I am definitely learning to take one day at a time and to really appreciate those hours that I feel good. We're getting pretty good at taking advantage of those times, and figuring out when they might be. So far, I've felt good the Tuesday evening and Wednesday right before a treatment. And there are other sporadic hours when all the drugs are working in harmony.
We're halfway done with the A/C cycle. Yesterday Darrin commented that it's all downhill from here. I told him we could take that 2 different ways! Darrin has been such a great supporter and advocate. He helps me remember details and takes care of so many things. When I'm awake at treatment, we've been enjoying each other's company immensely. We've started working on the 8th grade melodrama for this year. No spoilers, but it should be really fun. Our adjusted expectations for the summer are going well.
Thanks again for your prayers and support!! One month of chemo down, 4 to go! And then radiation. :)
GO TEAM ROBIN!
Camping trip
I'm a few days behind in blogging, so I think I'll break it into two entries. First, we had a great camping trip, but not without some crazy adventures! Getting over to Waukee was quite a challenge for my tummy. We had to go quite a bit under the speed limit so I didn't get too sick. Darrin did a great job telling stories at the Waukee Public Library. They really loved him. Then we went on down the road to Griswold, in far SW Iowa. We camped at the lovely Cold Springs State Park. We were the only people there. I felt great starting about 5 pm. We made pie iron pizzas over the fire, and s'mores and popcorn. It was a really cool evening, so the fire was great.
We have a little Coleman pop-up camper that we bought from some friends a few years ago. It's over 30 years old. When we got it, it just needed to be recanvassed, and it was pretty much as good as new. That is, until this trip. :) At about 4:30 in the morning, Darrin rolled over and our bed fell right out of the frame and collapsed! Scared us to death! There was nothing we could do at 4:30, so he and I slept in the van the rest of the night. The boys were all fine on their ends.
In the morning we got up to assess the damage. I don't understand it completely, but some parts had sheared off that were vital to holding the bed in place. We had to break it further to get it to push back in so we could put the camper down. The good news is Darrin found the parts we need and we should be able to fix it. But even if we can't and we have to have it professionally done, it would be worth a few hundred dollars. We can camp for $12 a night. A hotel for 5 of us would always cost around $100 or more. I'd say it's definitely worth fixing!
On Wednesday, Darrin told three different sets of stories at the Griswold Public Library. They all went really well. After he was done at 3, we went over the tour the Hitchcock House, a National Historic Site and a member of the National Underground Railroad Heritage Sites. It was a neat tour. Darrin does a program on the Underground Railroad in Iowa and doesn't have a lot from western Iowa, so it was a good business opportunity, too.
We got on the road around 4:15. We decided to have me drive, since sometimes motion sickness is better when you're driving. I actually felt really good all day. We stopped for supper at the Culver's in Newton and ran into some old friends that had moved over there a couple years ago. It was wonderful to catch up for a few minutes.
Darrin took over driving after Newton. We had just gotten past the Williamsburg exit when a trucker pulled up next to us and honked and wildly gestured to us to get off the road. This kind of freaked us out, but we did it. Somewhere along the line, the pin holding our hitch in place had fallen out and our trailer was being pulled by only the chains connected to the bottom of the hitch. The hitch was still there, the ball had gotten stuck at a weird angle, but it wasn't attached to the van in any way. Praise the Lord the trucker had noticed it! We called Darrin's dad and he brought us a new pin. It was a very easy fix. I absolutely shudder to think what could have happened if the trailer had come off the van. Andy called the trucker our road angel. There have been a few times we've had trouble on the road, and there has always been someone who has come along side to help. We pray before every trip that the Lord will protect us as we travel. He always does!!
So, other than some adventures that make good stories, we had a great time and I was blessed with an evening and a whole day of feeling good. I hope we'll be able to camp again this summer or fall, but if not, at least I got one fun trip!!
We have a little Coleman pop-up camper that we bought from some friends a few years ago. It's over 30 years old. When we got it, it just needed to be recanvassed, and it was pretty much as good as new. That is, until this trip. :) At about 4:30 in the morning, Darrin rolled over and our bed fell right out of the frame and collapsed! Scared us to death! There was nothing we could do at 4:30, so he and I slept in the van the rest of the night. The boys were all fine on their ends.
In the morning we got up to assess the damage. I don't understand it completely, but some parts had sheared off that were vital to holding the bed in place. We had to break it further to get it to push back in so we could put the camper down. The good news is Darrin found the parts we need and we should be able to fix it. But even if we can't and we have to have it professionally done, it would be worth a few hundred dollars. We can camp for $12 a night. A hotel for 5 of us would always cost around $100 or more. I'd say it's definitely worth fixing!
On Wednesday, Darrin told three different sets of stories at the Griswold Public Library. They all went really well. After he was done at 3, we went over the tour the Hitchcock House, a National Historic Site and a member of the National Underground Railroad Heritage Sites. It was a neat tour. Darrin does a program on the Underground Railroad in Iowa and doesn't have a lot from western Iowa, so it was a good business opportunity, too.
We got on the road around 4:15. We decided to have me drive, since sometimes motion sickness is better when you're driving. I actually felt really good all day. We stopped for supper at the Culver's in Newton and ran into some old friends that had moved over there a couple years ago. It was wonderful to catch up for a few minutes.
Darrin took over driving after Newton. We had just gotten past the Williamsburg exit when a trucker pulled up next to us and honked and wildly gestured to us to get off the road. This kind of freaked us out, but we did it. Somewhere along the line, the pin holding our hitch in place had fallen out and our trailer was being pulled by only the chains connected to the bottom of the hitch. The hitch was still there, the ball had gotten stuck at a weird angle, but it wasn't attached to the van in any way. Praise the Lord the trucker had noticed it! We called Darrin's dad and he brought us a new pin. It was a very easy fix. I absolutely shudder to think what could have happened if the trailer had come off the van. Andy called the trucker our road angel. There have been a few times we've had trouble on the road, and there has always been someone who has come along side to help. We pray before every trip that the Lord will protect us as we travel. He always does!!
So, other than some adventures that make good stories, we had a great time and I was blessed with an evening and a whole day of feeling good. I hope we'll be able to camp again this summer or fall, but if not, at least I got one fun trip!!
Monday, July 14, 2014
A Good Day!
Today was a pretty good day. I needed a long nap this afternoon, but I felt mostly decent all day. I'm praying hard that it will continue through the next couple of days.
We (by we I mean Darrin and the boys) ;) set up the camper today. It weathered the winter really well, which was a very pleasant blessing. We are pretty much ready to head out tomorrow for a one night trip. I love to camp more than about any other summer time activity, so I am very excited. I got all the food prepped today and made sure we had plenty of stuff for pie iron pizzas, smores, and apple pies.
Growing up my family took several long trips all over the country. The last couple of years we've been able to do the same with our boys and it has been amazing. It has been really neat to see God's hand in our schedule this summer. When we got back last year from the east coast, we decided we wouldn't take a big trip this summer. We thought a few smaller trips would be fun and then we could be home more. Little did we know that we wouldn't have been able to take a long trip even if we had wanted to! The Lord saved us from major disappointment. Not going to Branson is disappointing, but it isn't like we have to miss out on one of our 2 week huge trips that we plan for months.
It's also amazing how God worked out Darrin's storytelling schedule. He has 17 or 18 library gigs this summer. That is just enough to easily cover our budget, while still giving him plenty of time at home. It is exactly what we need and when we need it. It is so humbling to me that the Lord of the universe is so intimately involved in every aspect of our lives. Even through this challenge, He is providing everything we need and has been taking care of it well before we knew it. I know I've talked about this before, but it really never ceases to amaze me.
Today we had a blast with the boys. It is so good to have Andy home from all his trips. He was rested today and I felt good, so it was a day full of lots of silliness and laughter. I am again so humbled to get to parent three absolutely amazing young men. They are so full of love and joy and helpfulness. I often wonder how I could ever be so lucky. But then Luke will start licking people, and I'll get attacked by frilled lizards and dinosaurs, and I'll remember that they are pretty typical weirdos. :)
We bought some sea bands today to continue to help with motion sickness, so hopefully tomorrow's trip will go well. Sea bands are like little wrist bands with a button in the middle that hits a pressure point in the wrist that is supposed to help with nausea. I'll try anything at this point, and several people I know said they were helpful during pregnancy.
If this round of chemo is anything like the last, the next two days should be great. Thanks for continuing to pray!!
We (by we I mean Darrin and the boys) ;) set up the camper today. It weathered the winter really well, which was a very pleasant blessing. We are pretty much ready to head out tomorrow for a one night trip. I love to camp more than about any other summer time activity, so I am very excited. I got all the food prepped today and made sure we had plenty of stuff for pie iron pizzas, smores, and apple pies.
Growing up my family took several long trips all over the country. The last couple of years we've been able to do the same with our boys and it has been amazing. It has been really neat to see God's hand in our schedule this summer. When we got back last year from the east coast, we decided we wouldn't take a big trip this summer. We thought a few smaller trips would be fun and then we could be home more. Little did we know that we wouldn't have been able to take a long trip even if we had wanted to! The Lord saved us from major disappointment. Not going to Branson is disappointing, but it isn't like we have to miss out on one of our 2 week huge trips that we plan for months.
It's also amazing how God worked out Darrin's storytelling schedule. He has 17 or 18 library gigs this summer. That is just enough to easily cover our budget, while still giving him plenty of time at home. It is exactly what we need and when we need it. It is so humbling to me that the Lord of the universe is so intimately involved in every aspect of our lives. Even through this challenge, He is providing everything we need and has been taking care of it well before we knew it. I know I've talked about this before, but it really never ceases to amaze me.
Today we had a blast with the boys. It is so good to have Andy home from all his trips. He was rested today and I felt good, so it was a day full of lots of silliness and laughter. I am again so humbled to get to parent three absolutely amazing young men. They are so full of love and joy and helpfulness. I often wonder how I could ever be so lucky. But then Luke will start licking people, and I'll get attacked by frilled lizards and dinosaurs, and I'll remember that they are pretty typical weirdos. :)
We bought some sea bands today to continue to help with motion sickness, so hopefully tomorrow's trip will go well. Sea bands are like little wrist bands with a button in the middle that hits a pressure point in the wrist that is supposed to help with nausea. I'll try anything at this point, and several people I know said they were helpful during pregnancy.
If this round of chemo is anything like the last, the next two days should be great. Thanks for continuing to pray!!
Sunday, July 13, 2014
Dead modem
I'm sorry I've been absent for a couple of days. Our modem went down right after I posted on Thursday night and we just got a new one this morning. The Mediacom guy was surprised at how awful our equipment was. He fixed everything up and now hopefully our internet will run at a decent speed and not drop Netflix every night. :)
I've managed to stay away from the clinic for 3 whole days so far!! They called me on Friday wondering why I didn't come in for my shot, but they hadn't actually scheduled me for one. We decided that I could go without it, so I got to stay home. I still don't have the nausea under control- I've been throwing up everyday. But it is better than it has been. Today I am completely exhausted. Sylvia said that would be normal for today and tomorrow and hopefully by Tuesday and Wednesday I'll be ok for our little camping trip.
I'm eating lots of potassium rich foods like apricots to try to keep those levels up. I'm back to pretty much no taste sensation at all. I know I'm eating, and I know what it is supposed to taste like, but right now everything is pretty tasteless again.
I was telling Darrin yesterday that I feel like I move from meal to meal to meal to bed everyday. I guess we all do that, but it seems like that is all I'm focused on. Will I be able to taste anything? Will it stay down? Will I actually be able to sleep comfortably tonight? It's like normal activities have just slid away and I'm focusing on getting through the day so I can see if I feel better on the next one.
We did a little shopping yesterday and it cost me vomiting and bed for the rest of the day. We're not quite to the halfway mark on this round of treatment. Thursday will be halfway. Then there will just be one more month of this awfulness, Lord willing. After that, the second round drug will hopefully be nicer. Especially since I'll be starting that one right as school gets going again.
We did have a little fun yesterday brushing and bathing all the cats. :) That is quite the experience. They are actually quite good about it, though Chloe yowls to beat the band. But they are much less sheddy now, which is nice for cuddling. Darrin did a great job with them all.
It was nice to see everyone at church today. Please don't ever be offended if I don't talk much or seem to be avoiding people. I love to be there, but it is quite an effort. Also- I have to be really careful to not pick up extra germs since my immune system is so knocked out. I did really enjoy Sean's message and the music- Great is His Faithfulness!!! Strength for today and bright hope for tomorrow- blessings all mine and ten thousand beside. :)
I've managed to stay away from the clinic for 3 whole days so far!! They called me on Friday wondering why I didn't come in for my shot, but they hadn't actually scheduled me for one. We decided that I could go without it, so I got to stay home. I still don't have the nausea under control- I've been throwing up everyday. But it is better than it has been. Today I am completely exhausted. Sylvia said that would be normal for today and tomorrow and hopefully by Tuesday and Wednesday I'll be ok for our little camping trip.
I'm eating lots of potassium rich foods like apricots to try to keep those levels up. I'm back to pretty much no taste sensation at all. I know I'm eating, and I know what it is supposed to taste like, but right now everything is pretty tasteless again.
I was telling Darrin yesterday that I feel like I move from meal to meal to meal to bed everyday. I guess we all do that, but it seems like that is all I'm focused on. Will I be able to taste anything? Will it stay down? Will I actually be able to sleep comfortably tonight? It's like normal activities have just slid away and I'm focusing on getting through the day so I can see if I feel better on the next one.
We did a little shopping yesterday and it cost me vomiting and bed for the rest of the day. We're not quite to the halfway mark on this round of treatment. Thursday will be halfway. Then there will just be one more month of this awfulness, Lord willing. After that, the second round drug will hopefully be nicer. Especially since I'll be starting that one right as school gets going again.
We did have a little fun yesterday brushing and bathing all the cats. :) That is quite the experience. They are actually quite good about it, though Chloe yowls to beat the band. But they are much less sheddy now, which is nice for cuddling. Darrin did a great job with them all.
It was nice to see everyone at church today. Please don't ever be offended if I don't talk much or seem to be avoiding people. I love to be there, but it is quite an effort. Also- I have to be really careful to not pick up extra germs since my immune system is so knocked out. I did really enjoy Sean's message and the music- Great is His Faithfulness!!! Strength for today and bright hope for tomorrow- blessings all mine and ten thousand beside. :)
Thursday, July 10, 2014
Disappointment
I spent another 5 and a half hours at the clinic today. My potassium levels were too low, so that got added to the regimen of steroids and anti-nausea meds. Today it all gave me a massive headache again, so there was some morphine, too. We're also trying a motion sickness patch to try to help the nausea, too. Sylvia and I talked quite a bit, and decided that I am just going to have to go in everyday for a week after each of the next 2 chemo rounds to get the extra drugs to try to stay out of the hospital and in some sort of fit shape to get through the days. Lord willing I won't have to go in again until next Thursday, but I'm still fighting this massive headache, so we'll see what happens this weekend.
The big disappointment is that we'll have to cancel our trip to Branson with my parents. I'll have to be in for infusions and extra treatments, and there is just no way we'll be able to go. I'm praying the various places will reimburse us- the whole trip is already paid for. We were also planning a little overnighter to Adventureland in a couple weeks that I won't be able to do. Darrin is just going to take the boys for the day. He is telling stories in Altoona, so they'll go to the park, he'll tell his stories, and then they'll come home. I'll spend the day infusing. At the start of this we thought we'd be able to do all our little trips. Now it looks like I won't get to do any. We are hoping to camp one night next week when Darrin tells in western Iowa. I'm really praying we'll at least get that.
I've received some wonderfully encouraging cards in the mail this week. The scriptures have been so perfectly timed. Eventually I'll get thank you notes to everyone, but please consider yourselves thanked. I'm asking God to specially bless all of you who are such blessings to me.
I am very disappointed about all the extra treatments and having to miss out on our fun summer plans. But I am happy to say that I am not feeling too discouraged. That is clearly God working through your prayers, because spending 4-5 hours at the clinic everyday should be discouraging. I know we are just doing what has to be done to get through this, and that it will end eventually. The next round of chemo drugs should be much easier on my body. I am choosing to enjoy the time talking with my husband (today with my mom), and just enjoying being together, even though it's in a chair with lots of tubing hooked up.
Now I'd better stop writing as I am not sure how much sense my morphine and oxycodone muddled brain is making. Go Team Robin!
The big disappointment is that we'll have to cancel our trip to Branson with my parents. I'll have to be in for infusions and extra treatments, and there is just no way we'll be able to go. I'm praying the various places will reimburse us- the whole trip is already paid for. We were also planning a little overnighter to Adventureland in a couple weeks that I won't be able to do. Darrin is just going to take the boys for the day. He is telling stories in Altoona, so they'll go to the park, he'll tell his stories, and then they'll come home. I'll spend the day infusing. At the start of this we thought we'd be able to do all our little trips. Now it looks like I won't get to do any. We are hoping to camp one night next week when Darrin tells in western Iowa. I'm really praying we'll at least get that.
I've received some wonderfully encouraging cards in the mail this week. The scriptures have been so perfectly timed. Eventually I'll get thank you notes to everyone, but please consider yourselves thanked. I'm asking God to specially bless all of you who are such blessings to me.
I am very disappointed about all the extra treatments and having to miss out on our fun summer plans. But I am happy to say that I am not feeling too discouraged. That is clearly God working through your prayers, because spending 4-5 hours at the clinic everyday should be discouraging. I know we are just doing what has to be done to get through this, and that it will end eventually. The next round of chemo drugs should be much easier on my body. I am choosing to enjoy the time talking with my husband (today with my mom), and just enjoying being together, even though it's in a chair with lots of tubing hooked up.
Now I'd better stop writing as I am not sure how much sense my morphine and oxycodone muddled brain is making. Go Team Robin!
Wednesday, July 9, 2014
Making progress
We just got back from another morning of infusions. I'm feeling decent right now, so I thought I would blog a little earlier than normal. Shiloh and Luke and Darrin are out finally getting some yard work done. We had some special help from a couple garden gnomes who came to help weed and pick peas this morning. Thank you!!! We're blessed with some beautiful weather, so it isn't too onerous a task to mow and mulch.
I realized I never gave an update on Shiloh's testing. We won't have any results for a couple of weeks, but it seems to have gone well. Getting those services would be so great. They will provide job training, life skills help, and will hopefully eventually help him get into a group housing setting. Not a group home, but an apartment like setting with other guys and someone who lives with them as a caretaker. We want him to live as normal a life as possible. We are more than happy to have him stay with us until he is 22- the age most kids graduate from college. But then he needs to be able to live apart from us and have a full adult life with a job, responsibilities, and friends of his own. If he wants to move out sooner, we'll try to help him do that. He has made so much progress in the last few years- we're confident he can live a great life on his own with a little help. Thanks for praying with us that the help will be available. Every kid should have the opportunity to make it on their own without their parents. Not that we wouldn't be there whenever he needed us, like all parents are.
Andy seems to be having a great time in Alabama with the youth group. He did a VBS for a couple of days, and today and tomorrow he is doing some house painting/construction. They'll head home on Friday and be back on Saturday afternoon. He says it's been fun swimming in the Gulf. I'll be really glad to have everyone home again. We've had fun with Shiloh and Luke, but it just isn't the same without the whole gang.
Thanks for continuing to pray about the nausea. We're supposed to go camping over night next Tuesday and I really want to be able to go. I was so sad to miss the Crow family trip. This is just a short trip for Darrin to tell stories in Western Iowa for a couple days. We'll leave Tuesday and be back on Wednesday. I need to feel well enough to get our camper ready to go and get plans made. Thanks for taking this to the Lord for us! We love you all!
I realized I never gave an update on Shiloh's testing. We won't have any results for a couple of weeks, but it seems to have gone well. Getting those services would be so great. They will provide job training, life skills help, and will hopefully eventually help him get into a group housing setting. Not a group home, but an apartment like setting with other guys and someone who lives with them as a caretaker. We want him to live as normal a life as possible. We are more than happy to have him stay with us until he is 22- the age most kids graduate from college. But then he needs to be able to live apart from us and have a full adult life with a job, responsibilities, and friends of his own. If he wants to move out sooner, we'll try to help him do that. He has made so much progress in the last few years- we're confident he can live a great life on his own with a little help. Thanks for praying with us that the help will be available. Every kid should have the opportunity to make it on their own without their parents. Not that we wouldn't be there whenever he needed us, like all parents are.
Andy seems to be having a great time in Alabama with the youth group. He did a VBS for a couple of days, and today and tomorrow he is doing some house painting/construction. They'll head home on Friday and be back on Saturday afternoon. He says it's been fun swimming in the Gulf. I'll be really glad to have everyone home again. We've had fun with Shiloh and Luke, but it just isn't the same without the whole gang.
Thanks for continuing to pray about the nausea. We're supposed to go camping over night next Tuesday and I really want to be able to go. I was so sad to miss the Crow family trip. This is just a short trip for Darrin to tell stories in Western Iowa for a couple days. We'll leave Tuesday and be back on Wednesday. I need to feel well enough to get our camper ready to go and get plans made. Thanks for taking this to the Lord for us! We love you all!
Tuesday, July 8, 2014
Keeping the Beast at Bay
I got to spend another afternoon with all my favorite medical people at PCI. We couldn't keep the nausea under control, so it was in for fluids and steroids and anti-nausea infusions. I have to go back again for more in the morning. I am so thankful to live less than 10 minutes from such excellent medical care. They do such a great job. Spending 3-4 hours several times a week isn't really my idea of a fun summer, but at least the chairs are comfy.
My awesome sister-in-law Jackie brought us dinner tonight and it actually tasted good!! We also discovered that grape juice, warm milk and pretzels are all winners. :) And Tammy Uphouse brought magical cookies that we all keep raving about. These are all good things!! I'm so thankful to have a few things that are tasting good. Odd combinations, to be sure, but I'll take it!
Poor Darrin has had a tough day. He had plans to get some work done on stories and do some mulching in the front yard, but then I got sick. On top of that, the boys' toilet overflowed and took hours and help from Sean Lillis to get unclogged. I just feel so bad that he can't accomplish the things he really wants to (and needs to) do. He loves working outside, and it was such a beautiful day. Please remember him in your prayers, too. I'm sure he would love to go have lunch or a beer or something with a friend or two. I worry that he will get overwhelmed or discouraged. I'm so thankful that he has the kind of job where he can be with me most of the time, but I know that is hard on him, too. He has things he wants and needs to do that are important, too. His garden is so important to him, and he doesn't even have time to harvest peas and keep it weeded. He is such a selfless man, always putting me and the boys ahead of himself. I cannot imagine a better man to be by my side. It breaks my heart that so much of this falls on him.
He was funny today- he commented that he could handle floods, cancer, car accidents, but a clogged toilet was just too much. It's funny the things that push us over the edge.
Thanks for hanging with me through my day of despair yesterday. I almost didn't write about it, but I want this blog to be real. This is hard, and I'm not going to pretend it isn't. Being honest and open helps me deal with my emotions, and helps you all know how to pray for us. And I know God can take it. I'm not doubting Him at all. I'm completely confident in His provision. But that doesn't make everyday sunshine and roses. Jesus definitely didn't have sunshine and roses while following His Father's plan. But it was the very best plan, and was worth all the pain and suffering. I'm confident that this will be, too. I'm obviously not going to do anything as awesome as saving the whole world from sin, but I know there will be good that comes from this struggle. And that makes it bearable. And good sugar cookies help, too. :)
My awesome sister-in-law Jackie brought us dinner tonight and it actually tasted good!! We also discovered that grape juice, warm milk and pretzels are all winners. :) And Tammy Uphouse brought magical cookies that we all keep raving about. These are all good things!! I'm so thankful to have a few things that are tasting good. Odd combinations, to be sure, but I'll take it!
Poor Darrin has had a tough day. He had plans to get some work done on stories and do some mulching in the front yard, but then I got sick. On top of that, the boys' toilet overflowed and took hours and help from Sean Lillis to get unclogged. I just feel so bad that he can't accomplish the things he really wants to (and needs to) do. He loves working outside, and it was such a beautiful day. Please remember him in your prayers, too. I'm sure he would love to go have lunch or a beer or something with a friend or two. I worry that he will get overwhelmed or discouraged. I'm so thankful that he has the kind of job where he can be with me most of the time, but I know that is hard on him, too. He has things he wants and needs to do that are important, too. His garden is so important to him, and he doesn't even have time to harvest peas and keep it weeded. He is such a selfless man, always putting me and the boys ahead of himself. I cannot imagine a better man to be by my side. It breaks my heart that so much of this falls on him.
He was funny today- he commented that he could handle floods, cancer, car accidents, but a clogged toilet was just too much. It's funny the things that push us over the edge.
Thanks for hanging with me through my day of despair yesterday. I almost didn't write about it, but I want this blog to be real. This is hard, and I'm not going to pretend it isn't. Being honest and open helps me deal with my emotions, and helps you all know how to pray for us. And I know God can take it. I'm not doubting Him at all. I'm completely confident in His provision. But that doesn't make everyday sunshine and roses. Jesus definitely didn't have sunshine and roses while following His Father's plan. But it was the very best plan, and was worth all the pain and suffering. I'm confident that this will be, too. I'm obviously not going to do anything as awesome as saving the whole world from sin, but I know there will be good that comes from this struggle. And that makes it bearable. And good sugar cookies help, too. :)
Monday, July 7, 2014
Nothing
Nothing tastes good. Nothing. This morning I had a sausage and egg biscuit that was great, and now I can't even stand the thought of one. We've tried practically every beverage on the planet, and they all taste gross, or are completely tasteless, but not in a good way. I eat and I drink because I have to, but there is no joy in it. This is especially hard for me, a self- proclaimed foodie. I love to eat, I love to cook, I love to share meals with people. My favorite things are at best tasteless and at worst disgusting. This is very depressing.
Add to that lots of nausea and some vomiting today, and it has not been a stellar day for me. It has been a day of resentment of Agatha. I resent that I have to endure all these treatments or I will die. Those really are the only options, and it kind of stinks. I feel like David when he was in the depths of his despair. I am clinging to the knowledge that God is there, he is taking care of me, he will vanquish my enemies (fear, nausea, vomiting, headaches, despair, and ultimately this cancer). But, boy, being in the trenches of it is HARD. I just want to have a drink that tastes good. So I guess I'll cling to the well of Living Water- the sweetest there is. And pray for a better day tomorrow.
Add to that lots of nausea and some vomiting today, and it has not been a stellar day for me. It has been a day of resentment of Agatha. I resent that I have to endure all these treatments or I will die. Those really are the only options, and it kind of stinks. I feel like David when he was in the depths of his despair. I am clinging to the knowledge that God is there, he is taking care of me, he will vanquish my enemies (fear, nausea, vomiting, headaches, despair, and ultimately this cancer). But, boy, being in the trenches of it is HARD. I just want to have a drink that tastes good. So I guess I'll cling to the well of Living Water- the sweetest there is. And pray for a better day tomorrow.
Sunday, July 6, 2014
Perfection in Weakness
This morning I got to sit in with one of the worship teams at church. We got there a little early, and the normal drummer was gone, so I agreed to step in. It was a lot of fun, but it cost me a 3 hour nap when I got home. It is amazing how tired I get. I'm still walking at least 15 minutes every day and trying to do some of my strengthening exercises, but it is really hard to shake this fatigue. I know it will keep getting worse, too. So, I am trying to lower my expectations to a reasonable level. For example, I walked with Darrin and Luke up to Kenwood to fly a kite, but I just let them fly it while I watched. Then we walked back. That was plenty of energy expenditure for me, but I got some walking in and some fresh air.
If it is really true that God's power really is made perfect in weakness (and I firmly believe that it is) then I am headed for perfection, baby!! :) It's good for me to realize that my strength is not sufficient, but His is.
Tomorrow we take Shiloh in for some testing at Horizons. We really need him to qualify for an intellectual disability waiver. That will open up lots of very important services and opportunities for him. If he doesn't qualify, life after high school will be harder. We won't have as many options for help open to him. The waiver he is currently on only allows for respite help. The ID waiver will provide more skills training, housing opportunities and other services. We'd appreciate your prayers for good results with that testing. It will be a huge blessing and relief to know that he will be taken care of after high school.
This is just another area where I need to remember that He is already there- God knows exactly what it is in store for Shiloh, and He has the best plan, whatever that might be. Isn't it funny how we can do a good job trusting in one area, and then forget to trust in another area? It's not like God is only sometimes trustworthy or only sometimes has our best interests in mind. I am often in need of reminding, as I am sure many of us are. It's a good thing God is infinitely patient!!
It is also pretty amazing how much God loves to bless us. He has used so many of you to bring me and Darrin encouragement lately. I also think it's great how He uses his creation. For example, the most adorable bunny has been sitting right outside my window the whole time I've been writing. He is just sitting under a chair enjoying the shade and being cute as only bunnies can. I love animals- they just bring me so much joy. They also again remind me of God's love and provision. He takes care of the bunnies and the sparrows, He'll take care of me, too.
If it is really true that God's power really is made perfect in weakness (and I firmly believe that it is) then I am headed for perfection, baby!! :) It's good for me to realize that my strength is not sufficient, but His is.
Tomorrow we take Shiloh in for some testing at Horizons. We really need him to qualify for an intellectual disability waiver. That will open up lots of very important services and opportunities for him. If he doesn't qualify, life after high school will be harder. We won't have as many options for help open to him. The waiver he is currently on only allows for respite help. The ID waiver will provide more skills training, housing opportunities and other services. We'd appreciate your prayers for good results with that testing. It will be a huge blessing and relief to know that he will be taken care of after high school.
This is just another area where I need to remember that He is already there- God knows exactly what it is in store for Shiloh, and He has the best plan, whatever that might be. Isn't it funny how we can do a good job trusting in one area, and then forget to trust in another area? It's not like God is only sometimes trustworthy or only sometimes has our best interests in mind. I am often in need of reminding, as I am sure many of us are. It's a good thing God is infinitely patient!!
It is also pretty amazing how much God loves to bless us. He has used so many of you to bring me and Darrin encouragement lately. I also think it's great how He uses his creation. For example, the most adorable bunny has been sitting right outside my window the whole time I've been writing. He is just sitting under a chair enjoying the shade and being cute as only bunnies can. I love animals- they just bring me so much joy. They also again remind me of God's love and provision. He takes care of the bunnies and the sparrows, He'll take care of me, too.
Saturday, July 5, 2014
I lost my hair today
Today was probably my toughest day emotionally so far on this journey. I am very thankful that my hair just started falling out yesterday, and I managed to make it to my appointment with Crystal today before it all came out. Yesterday was funny- when I ran my hand through my hair and came away with a bunch, Darrin quickly warned- "Don't sneeze!!" :)
It's funny how emotionally tied we are to our appearance. I have never been one to do much with hair or makeup, but I always loved my long hair. I thought the short purple hair was lots of fun, too. And now I'm surprised to say I'm not as upset about being bald as I thought I would be. I'm not happy about it, but I'm not devastated by it, either. Though I did have a good cry before we went to my appointment. I guess this is just the final, truly outward sign of this battle with cancer. I'm choosing to wear it proudly. Plus, I have lots of beautiful and cute scarves and hats to wear. :)
So far this round of chemo hasn't been as bad as the last. I had a pretty bad headache going earlier, but I threw 4 different drugs at it and it has mostly subsided. My tummy refuses to completely settle and food is starting to taste pretty yucky. I think I'm going to switch to plastic silverware- that is supposed to help. I've also noticed the dry mouth kicking in, so I'm swigging Biotene 5 times a day. I think I need to make myself a chart so I know what drugs I am taking when so I can keep track of times. It is amazing how many prescriptions I have. I hate relying on drugs to feel only decent, but it is better than the alternative.
I've had two of my daily shots so far. I'll have to leave church right away tomorrow to get another one at 11. I seem to be responding better to the one a day rather than the one big Neulasta shot.
I was very, very thankful for a good day yesterday for the 4th. We had crepes for breakfast and spent the morning playing Settlers of Cataan with the boys. Then we spent the afternoon with Darrin's family outside at Mom and Dad Crow's house. Then last night we made millions of s'mores with the Lillis's and then walked to Kenwood school to watch the Elmcrest fireworks, do sparklers and eat popcorn. It was an absolute blast. (no pun intended!) It was such a blessing to really enjoy the day. I was tired, but that is to be expected. After we got Andy off on the Youth Group trip this morning at 6:30, we headed over to the Farmer's Market for a little while, and then we came home and I slept until after 1.
I can tell the fatigue is starting to kick in more, so I'm trying to pace myself and not do too much. That is hard for me- I like to keep my house cleaned up and I like to get out and do things. I just need to realize that this is only for a season (I hope- sometimes fatigue can last for over a year!).
It's time to end our day with a short walk. My husband has decided he likes the bald look, so he'll be seen in public with me!!
It's funny how emotionally tied we are to our appearance. I have never been one to do much with hair or makeup, but I always loved my long hair. I thought the short purple hair was lots of fun, too. And now I'm surprised to say I'm not as upset about being bald as I thought I would be. I'm not happy about it, but I'm not devastated by it, either. Though I did have a good cry before we went to my appointment. I guess this is just the final, truly outward sign of this battle with cancer. I'm choosing to wear it proudly. Plus, I have lots of beautiful and cute scarves and hats to wear. :)
So far this round of chemo hasn't been as bad as the last. I had a pretty bad headache going earlier, but I threw 4 different drugs at it and it has mostly subsided. My tummy refuses to completely settle and food is starting to taste pretty yucky. I think I'm going to switch to plastic silverware- that is supposed to help. I've also noticed the dry mouth kicking in, so I'm swigging Biotene 5 times a day. I think I need to make myself a chart so I know what drugs I am taking when so I can keep track of times. It is amazing how many prescriptions I have. I hate relying on drugs to feel only decent, but it is better than the alternative.
I've had two of my daily shots so far. I'll have to leave church right away tomorrow to get another one at 11. I seem to be responding better to the one a day rather than the one big Neulasta shot.
I was very, very thankful for a good day yesterday for the 4th. We had crepes for breakfast and spent the morning playing Settlers of Cataan with the boys. Then we spent the afternoon with Darrin's family outside at Mom and Dad Crow's house. Then last night we made millions of s'mores with the Lillis's and then walked to Kenwood school to watch the Elmcrest fireworks, do sparklers and eat popcorn. It was an absolute blast. (no pun intended!) It was such a blessing to really enjoy the day. I was tired, but that is to be expected. After we got Andy off on the Youth Group trip this morning at 6:30, we headed over to the Farmer's Market for a little while, and then we came home and I slept until after 1.
I can tell the fatigue is starting to kick in more, so I'm trying to pace myself and not do too much. That is hard for me- I like to keep my house cleaned up and I like to get out and do things. I just need to realize that this is only for a season (I hope- sometimes fatigue can last for over a year!).
It's time to end our day with a short walk. My husband has decided he likes the bald look, so he'll be seen in public with me!!
Thursday, July 3, 2014
Encouragement
Today is C-Day. Chemo round 2. I'm praying my excellent team has come up with a great plan to keep me healthy in between this time. As I was getting up this morning, I started thinking about all the encouragement I've had recently.
First, I am actually 1% excited to go to chemo today because I have a really cool shirt. :) My friend Molly over at the Hiawatha Library sent me a t-shirt that says 'chemosabe'. Get it? Like Tanto. It cracks me up every time I look at it, and I'm wearing it today.
On Monday, Katelyn texted me and asked if she could drop by. She, Mac, Amanda, and Sophia had made lots of food. Sophia wasn't available to hang out, but the other three came over and chatted for a long time. We didn't have power because of the storm, so we sat around by candlelight and had a great time.
Teaching is my third love. Sounds funny, right? But number one and number 2 and God and my family. So I love teaching more than anything other than those. I love the kids I work with and I am so honored to call so many of them friends. Having those kids stop over absolutely made my week. I was so encouraged.
There are so many more examples of people dropping by with gifts or food or just to chat. I'm still getting lovely cards in the mail and emails. These acts of love really help me get through each day. Even when I'm feeling great, like the last couple of days, I still deal with fear, disappointment, and frustration. Knowing you all are coming along side me really helps. You are reminding me of God's love and provision every day. Thank you.
Now, on to chemo!! I'll check back in later, if I'm awake!!
First, I am actually 1% excited to go to chemo today because I have a really cool shirt. :) My friend Molly over at the Hiawatha Library sent me a t-shirt that says 'chemosabe'. Get it? Like Tanto. It cracks me up every time I look at it, and I'm wearing it today.
On Monday, Katelyn texted me and asked if she could drop by. She, Mac, Amanda, and Sophia had made lots of food. Sophia wasn't available to hang out, but the other three came over and chatted for a long time. We didn't have power because of the storm, so we sat around by candlelight and had a great time.
Teaching is my third love. Sounds funny, right? But number one and number 2 and God and my family. So I love teaching more than anything other than those. I love the kids I work with and I am so honored to call so many of them friends. Having those kids stop over absolutely made my week. I was so encouraged.
There are so many more examples of people dropping by with gifts or food or just to chat. I'm still getting lovely cards in the mail and emails. These acts of love really help me get through each day. Even when I'm feeling great, like the last couple of days, I still deal with fear, disappointment, and frustration. Knowing you all are coming along side me really helps. You are reminding me of God's love and provision every day. Thank you.
Now, on to chemo!! I'll check back in later, if I'm awake!!
Tuesday, July 1, 2014
So much. . .
So much has happened over the last few days. I stayed in the hospital until around lunch time on Sunday. Because of that, Darrin and I missed our family camping trip with the Crow clan. We'd been planning it since March. :( The boys went up with Darrin's folks and everyone had a great time. We decided not to go on Monday. They were camping 4 hours away in Wisconsin and we were afraid that that much time in the car might be bad. It was bitterly disappointing. I love Darrin's family and I love to camp. And I hate disappointing my husband. He loves to be with his family and I felt that I was keeping him from that. He was perfect about it, but I know he was bummed. I couldn't even look at the pictures when they got back- it made me too sad to think we'd missed all the fun. Stupid cancer. I hate that it takes away time from my family. And even though the boys got to go and had a great time, we didn't get to have a great time together. That bums me out. Though they probably didn't mind TOO much- Grandpa Crow let them eat all the donuts they wanted. :)
I felt absolutely great on Monday and mostly great today. It has been wonderful to be back to almost normal. Tomorrow I see the exercise guy and the nutritionist, so those appointments should be productive and helpful. Thursday we start all over, hopefully with a new, modified regimen that will keep me healthier in between. The side effects are so frustrating. I'm taking more medicine for side effects than for my regular illnesses. And some of them have scary side effects, so now we're talking about side effects of side effects. It's a crazy spiral.
I know I mentioned it in my last post, but my Dr. thinks I'm exceptional. Not in a good way,though. Apparently very few people have this much trouble with this chemo regimen, even though it has a reputation of being nasty. Trust me to stay ahead of the curve! :) I have a lot of faith in my team, though, and I know they are doing absolutely everything to help me out. They are such caring, compassionate people. Trying new drugs and rubbing my back even as I'm retching into a bowl. Several of them stayed late on Friday at PCI to make sure I was stable enough to head over to St. Luke's. They are a fabulous team and I'm so thankful for them all.
Of course, all my difficulties pale this weekend at the loss of Jenny Groothuis, a parent of 15 kids, 11 of whom attend Cedar Valley. She died on Sunday. I cannot even pretend to understand God's will or plan in all this. She was a wonderful woman who loved God and her family so much. Then Cedar Rapids also got pummeled with bad storms the last couple of days. I was telling a friend that we obviously are still on the wrong side of Heaven. We know everything will be made right in the end, but it's so hard to see it when there is so much pain right now. We cling to God's promise that He will work it all to good, but we also know that our definition of good and God's definition are not always the same. It's nearly impossible to see his plan right now, but I am absolutely confident that he has one and is working it out each day. I just want God to be glorified, not vilified, through these circumstances. He is the same yesterday, today, tomorrow and forever.
Thanks for your prayers and supportive comments and emails the last few days. I appreciate it all so much! God bless all of you for your support and care.
I felt absolutely great on Monday and mostly great today. It has been wonderful to be back to almost normal. Tomorrow I see the exercise guy and the nutritionist, so those appointments should be productive and helpful. Thursday we start all over, hopefully with a new, modified regimen that will keep me healthier in between. The side effects are so frustrating. I'm taking more medicine for side effects than for my regular illnesses. And some of them have scary side effects, so now we're talking about side effects of side effects. It's a crazy spiral.
I know I mentioned it in my last post, but my Dr. thinks I'm exceptional. Not in a good way,though. Apparently very few people have this much trouble with this chemo regimen, even though it has a reputation of being nasty. Trust me to stay ahead of the curve! :) I have a lot of faith in my team, though, and I know they are doing absolutely everything to help me out. They are such caring, compassionate people. Trying new drugs and rubbing my back even as I'm retching into a bowl. Several of them stayed late on Friday at PCI to make sure I was stable enough to head over to St. Luke's. They are a fabulous team and I'm so thankful for them all.
Of course, all my difficulties pale this weekend at the loss of Jenny Groothuis, a parent of 15 kids, 11 of whom attend Cedar Valley. She died on Sunday. I cannot even pretend to understand God's will or plan in all this. She was a wonderful woman who loved God and her family so much. Then Cedar Rapids also got pummeled with bad storms the last couple of days. I was telling a friend that we obviously are still on the wrong side of Heaven. We know everything will be made right in the end, but it's so hard to see it when there is so much pain right now. We cling to God's promise that He will work it all to good, but we also know that our definition of good and God's definition are not always the same. It's nearly impossible to see his plan right now, but I am absolutely confident that he has one and is working it out each day. I just want God to be glorified, not vilified, through these circumstances. He is the same yesterday, today, tomorrow and forever.
Thanks for your prayers and supportive comments and emails the last few days. I appreciate it all so much! God bless all of you for your support and care.
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