Friday, February 13, 2015
Mayo part two
Today we had four appointments. I am so disappointed. Basically I am looking at at least three major surgeries and some out patient procedures, as well. There is also the possibility of radiation back on the table,too. I didn't hear any more about my mammograms/ultrasound. I cannot even talk about how awful I feel about the whole thing. And to top it all off, I lost my wedding ring. I will write more when I can do it without crying.
Thursday, February 12, 2015
First day at Mayo
We started out today with a 9:30 visit with a general internal medicine doctor named Dr. Ghosh. She was very nice. We talked a lot about my medical history in general and my cancer treatment specifically. She agreed with our surgery desires and started trying to set up appointments, First for a mammogram, and then with the surgeon and plastic surgeon. I got an appointment for a mammogram at 2:00 today. Then both Dr. Ghosh and her scheduler were amazed that they managed to get both surgeons scheduled for tomorrow. I had to laugh a little because of course it was not surprising to have things fall in place. Too many of you are praying!
I went for my mammogram at two and ended up with a bit of a surprise. The short version is that there might be some cancer in my left breast. The radiologist can't be sure until he compares the mammogram and ultrasound to ones I had done last May, and then does a biopsy. Of course, having my surgery will take care of it, but if it is cancer, there will probably have to be additional treatment. How about we all pray it isn't cancer?!
So, that sums up day one. Keep praying and I'll keep you posted!
I went for my mammogram at two and ended up with a bit of a surprise. The short version is that there might be some cancer in my left breast. The radiologist can't be sure until he compares the mammogram and ultrasound to ones I had done last May, and then does a biopsy. Of course, having my surgery will take care of it, but if it is cancer, there will probably have to be additional treatment. How about we all pray it isn't cancer?!
So, that sums up day one. Keep praying and I'll keep you posted!
Dumb ipad
My iPad is acting up. That is code for 'I don't really know what I am doing.' :) Anyway, it is now 4:05 am and I just accidentally woke up Darrin while muttering imprecations at my iPad, so I should probably try to get some sleep. This post will show up before my actual post about arriving at Mayo, so if you are reading this, please go to the next entry to get the real information. I am so thankful for technology, except when it is smarter than me!
Arrived at Mayo
We left around four fifteen this afternoon for Mayo. It is amazing how much stuff we brought for possibly just a one night stay.i wanted several comfort items, so we brought my purple prayer shawl and my zebra blanket, both given to me by dear friends who had prayed over each of them. Wrapping up in them makes me feel like I am wrapping up in God's love and peace, and helps me remember how many people are praying for me.
The ride up was uneventful until we got to northern Iowa, where the wind whipped up and sent the snow blowing across the road like crazy. It was really beautiful in the headlights of oncoming cars, but also a bit scary. We made it to the hotel about 8:15, only ten or fifteen minutes ahead of my parents. I realized just before we left that I had forgotten to do all the paperwork they sent me, so I spent about 45 minutes doing that. They need to know everything, so it was nice to my folks around to help with family history. On a quick side note, my mom had the genetic testing done a week or so ago to see if she is the BRCA-1 carrier. Please pray that it will be my dad, instead. If it is Mom, she will have to have some surgery, too. Not as extensive as mine, probably, but no surgery is fun. If it is my dad who is the carrier, he won't have to do anything.
It was hard to leave school today not knowing when or if I will be back this semester. I did get to teach one of my favorite world history lessons today, though, which was a great way to finish. I taught about the Congress of Vienna, which happened after the Napoleonic wars to try to rebalance power in Europe. It is not the most interesting topic, so several years ago my mom and I sat and brainstormed ideas to make it interesting and memorable, since balance of power is an important concept even up to current times. We came up with a great activity using Oreos and milk. Whoever has the most Oreos has the most power,so we work to balance how many Oreos each 'country' has. It is lots of fun, and at the end the kids get to eat all the Oreos. Anyway- it was fun to (possibly) end on such a fun note.
I also got to pray (and cry) with several of the staff ladies before I left. The staff has been so amazing through all this. I am so blessed to have such a wonderful work environment.
Now we are here and it is 3:45 in the morning. The bed is comfortable, but it is too quiet and there is too much light. After my last hospital stay we talked about getting a nice sleeping mask because it is so bright at night with al the equipment in the room. We will have to do that before I go in this time. I am frustrated to be awake, but at least I remembered about the mask. I am also hungry, which is funny, since I haven't actually felt hungry for weeks. I've been eating mostly because I have to.
The ride up was uneventful until we got to northern Iowa, where the wind whipped up and sent the snow blowing across the road like crazy. It was really beautiful in the headlights of oncoming cars, but also a bit scary. We made it to the hotel about 8:15, only ten or fifteen minutes ahead of my parents. I realized just before we left that I had forgotten to do all the paperwork they sent me, so I spent about 45 minutes doing that. They need to know everything, so it was nice to my folks around to help with family history. On a quick side note, my mom had the genetic testing done a week or so ago to see if she is the BRCA-1 carrier. Please pray that it will be my dad, instead. If it is Mom, she will have to have some surgery, too. Not as extensive as mine, probably, but no surgery is fun. If it is my dad who is the carrier, he won't have to do anything.
It was hard to leave school today not knowing when or if I will be back this semester. I did get to teach one of my favorite world history lessons today, though, which was a great way to finish. I taught about the Congress of Vienna, which happened after the Napoleonic wars to try to rebalance power in Europe. It is not the most interesting topic, so several years ago my mom and I sat and brainstormed ideas to make it interesting and memorable, since balance of power is an important concept even up to current times. We came up with a great activity using Oreos and milk. Whoever has the most Oreos has the most power,so we work to balance how many Oreos each 'country' has. It is lots of fun, and at the end the kids get to eat all the Oreos. Anyway- it was fun to (possibly) end on such a fun note.
I also got to pray (and cry) with several of the staff ladies before I left. The staff has been so amazing through all this. I am so blessed to have such a wonderful work environment.
Now we are here and it is 3:45 in the morning. The bed is comfortable, but it is too quiet and there is too much light. After my last hospital stay we talked about getting a nice sleeping mask because it is so bright at night with al the equipment in the room. We will have to do that before I go in this time. I am frustrated to be awake, but at least I remembered about the mask. I am also hungry, which is funny, since I haven't actually felt hungry for weeks. I've been eating mostly because I have to.
Tuesday, February 10, 2015
Back to School
I made the huge decision last week to go back to school part time. I come in at 12:30, have two study halls, then teach world history, then have another study hall. Not too strenuous, to say the least. :) But it is great to be with the kids again, and it's given me time to work on speech stuff and help make sure my wonderful sub is staying on track time wise. This is very important in world history. 8,000 years of history in 36 weeks!
Our Large Group speech season is over. Our kids did a great job at state, and we are very, very proud of them. They had very little time to practice with our weird schedule and snow days. It was such a fun group of kids. Darrin and I really enjoyed getting to know the newcomers and deepening relationships with the returners. Contest days wiped me out, but it was nice to have something that is a part of my normal life.
PBS is going to air a documentary called, 'Cancer- the Emperor of all maladies.' I really want to watch it. Cancer is so unlike any other disease. It strips you bare of everything- literally. There are more side effects that I haven't even talked about on the blog- Things that aren't fit for mixed readership. :) It took from me everything I found enjoyable. Everything. Slowly, some of those effects are lessening. Food finally tastes mostly normal. I can stay awake through a movie now (mostly!), my ability to type is much better, I'm starting to grow hair back. (Right now I look like a punk from the 90's. I just need the heavy makeup and black, ripped up clothes) :) I put on earrings and a necklace today for the first time in months. Some of the other effects could linger on for a year or more. Many people say they never fully get their energy back. But I've been feeling pretty good for the last week or so.
However, the last couple of days have been really hard. Sunday night I was up until 2 crying. So why all the tears? Because I am finally feeling better, and I know I have to have major surgery that will hurtle me back into the world of pain and incapacity. I HATE that. I just want to feel good and be with my family. I'm ready to be done with this. We'll head up to Mayo tomorrow afternoon (Wed) and my appointment is at 9:30 on Thursday morning in the breast diagnostic center. From there, everything is up in the air.
We've been trying to do extra special things with the kids. My date with Andy was super fun. Last Friday night, we went out to a new wings place in town and to the cheap seats to see Big Hero Six. It was so much fun for all of us to be able to do that together. We've been watching more of our favorite shows together, too. Sunday evening Andy and I played Atari for about an hour. Today is Andy's 16th birthday, so we're celebrating tonight and I am taking him right after school to get his license. I'm focusing on the good and the fun to fight back the anxiety of the unknown. But it is not unknown to the LORD- he's got it all covered. I have to keep reminding myself of that. I'm working on the whole "Be not afraid" thing. Sometimes it works, and sometimes I struggle. That's when we fall back on God's grace and perfect plan. He's already there, taking care of everything. A comforting thought, isn't it?
Our Large Group speech season is over. Our kids did a great job at state, and we are very, very proud of them. They had very little time to practice with our weird schedule and snow days. It was such a fun group of kids. Darrin and I really enjoyed getting to know the newcomers and deepening relationships with the returners. Contest days wiped me out, but it was nice to have something that is a part of my normal life.
PBS is going to air a documentary called, 'Cancer- the Emperor of all maladies.' I really want to watch it. Cancer is so unlike any other disease. It strips you bare of everything- literally. There are more side effects that I haven't even talked about on the blog- Things that aren't fit for mixed readership. :) It took from me everything I found enjoyable. Everything. Slowly, some of those effects are lessening. Food finally tastes mostly normal. I can stay awake through a movie now (mostly!), my ability to type is much better, I'm starting to grow hair back. (Right now I look like a punk from the 90's. I just need the heavy makeup and black, ripped up clothes) :) I put on earrings and a necklace today for the first time in months. Some of the other effects could linger on for a year or more. Many people say they never fully get their energy back. But I've been feeling pretty good for the last week or so.
However, the last couple of days have been really hard. Sunday night I was up until 2 crying. So why all the tears? Because I am finally feeling better, and I know I have to have major surgery that will hurtle me back into the world of pain and incapacity. I HATE that. I just want to feel good and be with my family. I'm ready to be done with this. We'll head up to Mayo tomorrow afternoon (Wed) and my appointment is at 9:30 on Thursday morning in the breast diagnostic center. From there, everything is up in the air.
We've been trying to do extra special things with the kids. My date with Andy was super fun. Last Friday night, we went out to a new wings place in town and to the cheap seats to see Big Hero Six. It was so much fun for all of us to be able to do that together. We've been watching more of our favorite shows together, too. Sunday evening Andy and I played Atari for about an hour. Today is Andy's 16th birthday, so we're celebrating tonight and I am taking him right after school to get his license. I'm focusing on the good and the fun to fight back the anxiety of the unknown. But it is not unknown to the LORD- he's got it all covered. I have to keep reminding myself of that. I'm working on the whole "Be not afraid" thing. Sometimes it works, and sometimes I struggle. That's when we fall back on God's grace and perfect plan. He's already there, taking care of everything. A comforting thought, isn't it?
Monday, February 2, 2015
Getting Better
I can tell you all have been praying for me. I am doing much, much better. I have been able to wake up most days and have a productive day. A productive day for me right now means getting one or two tasks done, but I'll take it! I did sleep until 2 today, though. I needed a day to recharge, and this snow day was perfect for it.
I am going back to school this week part time- just in the afternoons. I'll have 2 study halls and my world history class, which is my favorite class to teach. It's kind of silly to just go back for 6 days, but I need to do something to keep me occupied and not focused on the trip to Mayo.
I decided that before our trip, I wanted to take each boy out on a date. They got to choose what to do, and there were no limits. ( I could do that because I knew they wouldn't want to do anything terribly expensive- they have relatively simple tastes.) Shiloh and I went to see the third Night at the Museum movie, went to McDonald's for supper, and then went to Walmart to look at Lego, since he had a gift card. He didn't find anything he wanted, so we went home and he ordered a set online. It was a very fun evening. Luke and I went to see Interstellar, which is a FANTASTIC film. I highly recommend it- spiritual themes all over the place. Then we went to Chick-fil-a for supper and headed home to watch Agent Carter on TV. Andy and I are going tomorrow. We're going to rent The Hundred Foot Journey and then go to Red Robin for supper. They are all so much fun to hang out with, and so very different. It has been so fun over the years to watch their personalities develop. They have been wonderful through this whole cancer journey. They take excellent care of me when I need help. I couldn't ask for better kids.
It has been so great to feel more like me again. Please keep praying. Anytime I start to think about Mayo and these surgeries I start to feel overwhelmed again. I just keep reminding myself that God is already there. He's on the other side of the surgeries and knows exactly how they are going to go. He also is right here beside me helping me through every day. That amazes me about God. He is everywhere and everyWHEN all at the same time. And he is intimately interested in all the wheres and whens. For all you Doctor Who fans- He is the ultimate Time Lord. :) Our God cares about every detail in our lives- nothing is too small to take to Him in prayer. I am so awed and humbled by that truth.
I've seen the Lord do a couple of undeniable miracles in some friends' lives over the last few weeks, after years of praying. His timing is perfect and wonderful. I am so privileged to be part of His family, and I know my cancer is part of his plan to bring glory to Himself. I still hate it, but that knowledge does make it easier. As do all your prayers and notes!! Let's praise the LORD for his goodness, TEAM ROBIN!
I am going back to school this week part time- just in the afternoons. I'll have 2 study halls and my world history class, which is my favorite class to teach. It's kind of silly to just go back for 6 days, but I need to do something to keep me occupied and not focused on the trip to Mayo.
I decided that before our trip, I wanted to take each boy out on a date. They got to choose what to do, and there were no limits. ( I could do that because I knew they wouldn't want to do anything terribly expensive- they have relatively simple tastes.) Shiloh and I went to see the third Night at the Museum movie, went to McDonald's for supper, and then went to Walmart to look at Lego, since he had a gift card. He didn't find anything he wanted, so we went home and he ordered a set online. It was a very fun evening. Luke and I went to see Interstellar, which is a FANTASTIC film. I highly recommend it- spiritual themes all over the place. Then we went to Chick-fil-a for supper and headed home to watch Agent Carter on TV. Andy and I are going tomorrow. We're going to rent The Hundred Foot Journey and then go to Red Robin for supper. They are all so much fun to hang out with, and so very different. It has been so fun over the years to watch their personalities develop. They have been wonderful through this whole cancer journey. They take excellent care of me when I need help. I couldn't ask for better kids.
It has been so great to feel more like me again. Please keep praying. Anytime I start to think about Mayo and these surgeries I start to feel overwhelmed again. I just keep reminding myself that God is already there. He's on the other side of the surgeries and knows exactly how they are going to go. He also is right here beside me helping me through every day. That amazes me about God. He is everywhere and everyWHEN all at the same time. And he is intimately interested in all the wheres and whens. For all you Doctor Who fans- He is the ultimate Time Lord. :) Our God cares about every detail in our lives- nothing is too small to take to Him in prayer. I am so awed and humbled by that truth.
I've seen the Lord do a couple of undeniable miracles in some friends' lives over the last few weeks, after years of praying. His timing is perfect and wonderful. I am so privileged to be part of His family, and I know my cancer is part of his plan to bring glory to Himself. I still hate it, but that knowledge does make it easier. As do all your prayers and notes!! Let's praise the LORD for his goodness, TEAM ROBIN!
Wednesday, January 28, 2015
Back to the blog
I'm sorry it has been so long since I have written-especially for you friends far away who don't see church updates. There is so much I could write about, but I'm just going to give you the pertinent details for now and then some thoughts about it all.
Just a week or so after I was done with chemo, the geneticist called with my test results. Yet again I have beaten all odds. I am in the 1 to 2 percent of the population who has the BRCA-1 gene. This means I have a dramatically increased risk for a new breast cancer and for ovarian cancer. It also means I can't do radiation to complete my therapy for this cancer because radiation is bad when you have this gene.
Therefore, I will be having a double mastectomy with reconstruction and most likely a full hysterectomy sometime in the relatively near future, probably at Mayo. I have not been working at all this semester, other than coaching speech. I'm trying to get strong enough to handle the surgeries. I am still in pretty bad shape from the chemo. I spent two weekends ago in the ER both Saturday night and Sunday night, and finally my Dr. admitted me on Monday. I couldn't stop vomiting, and on top of that I was having panic attacks. It took a good deal of lorazapam and morphine to calm me down. I've lost somewhere between 15-20 pounds. I very rarely have any appetite, except for fresh fruit. That always tastes good.
I'm regularly seeing the social worker, nutritionist, and exercise guy at the Cancer Center, as well as getting a massage every week. I also just started seeing another therapist to start dealing with mastectomy issues. The amount of support provided by the Cancer Center is truly amazing. It has been very helpful for both me and Darrin.
However, life has not gotten any easier. It's gotten harder. We thought we were almost done, and then we got blindsided by the BRCA-1 diagnosis. We did manage to get away for a couple days right before Christmas (funded by a dear old friend!) Unfortunately, the whirlpool in BOTH the hotel's whirlpool suites were broken. :( The manager knocked quite a bit off our bill, but we didn't get to relax in a whirlpool- which was kind of the whole point of going to a hotel instead of staying home. And we ended up spending a lot of our time finishing our Christmas shopping. But we were away from chores at home, so it was still nice. :)
Anyway, since then we've been trying to get our heads around everything. Many days I don't get up until the afternoon. If I do too much on one day, I'll have to sleep the whole next day to make up for it. After speech contest on Saturday I slept until 5 pm on Sunday, and then only got up because friends were coming over. This week is a little better physically. I've been more awake. Emotionally is a whole different story. People keep telling me I'm brave. But they don't see the days when I am curled up on our bed weeping my heart out because I'm so afraid. I'm afraid of these surgeries coming up, I'm afraid of never feeling better, I'm afraid of not getting my joy back. The battle seems never ending and I am exhausted. I didn't know I had so many tears to cry. Darrin and I made a list of everything I am afraid of, and it was a full notebook page long. As we talked through them all, Darrin pointed out that many of my fears are performance based- that I'm disappointing people or disappointing God. That was quite a freeing revelation. I'm not disappointing God- He loves me and is caring for me no matter what. And people know that I have cancer and cannot do the things I used to do right now. (badly constructed sentence, sorry- too lazy to fix it). I'm sorry if they are disappointed in me, but I can't worry about it.
We head up to Mayo on the 12th of Feb. Please pray that the consultation will be good and we'll ask all the right questions. And please pray with me against all this fear. I want my joy back. We need to keep fighting. Team Robin!!
Just a week or so after I was done with chemo, the geneticist called with my test results. Yet again I have beaten all odds. I am in the 1 to 2 percent of the population who has the BRCA-1 gene. This means I have a dramatically increased risk for a new breast cancer and for ovarian cancer. It also means I can't do radiation to complete my therapy for this cancer because radiation is bad when you have this gene.
Therefore, I will be having a double mastectomy with reconstruction and most likely a full hysterectomy sometime in the relatively near future, probably at Mayo. I have not been working at all this semester, other than coaching speech. I'm trying to get strong enough to handle the surgeries. I am still in pretty bad shape from the chemo. I spent two weekends ago in the ER both Saturday night and Sunday night, and finally my Dr. admitted me on Monday. I couldn't stop vomiting, and on top of that I was having panic attacks. It took a good deal of lorazapam and morphine to calm me down. I've lost somewhere between 15-20 pounds. I very rarely have any appetite, except for fresh fruit. That always tastes good.
I'm regularly seeing the social worker, nutritionist, and exercise guy at the Cancer Center, as well as getting a massage every week. I also just started seeing another therapist to start dealing with mastectomy issues. The amount of support provided by the Cancer Center is truly amazing. It has been very helpful for both me and Darrin.
However, life has not gotten any easier. It's gotten harder. We thought we were almost done, and then we got blindsided by the BRCA-1 diagnosis. We did manage to get away for a couple days right before Christmas (funded by a dear old friend!) Unfortunately, the whirlpool in BOTH the hotel's whirlpool suites were broken. :( The manager knocked quite a bit off our bill, but we didn't get to relax in a whirlpool- which was kind of the whole point of going to a hotel instead of staying home. And we ended up spending a lot of our time finishing our Christmas shopping. But we were away from chores at home, so it was still nice. :)
Anyway, since then we've been trying to get our heads around everything. Many days I don't get up until the afternoon. If I do too much on one day, I'll have to sleep the whole next day to make up for it. After speech contest on Saturday I slept until 5 pm on Sunday, and then only got up because friends were coming over. This week is a little better physically. I've been more awake. Emotionally is a whole different story. People keep telling me I'm brave. But they don't see the days when I am curled up on our bed weeping my heart out because I'm so afraid. I'm afraid of these surgeries coming up, I'm afraid of never feeling better, I'm afraid of not getting my joy back. The battle seems never ending and I am exhausted. I didn't know I had so many tears to cry. Darrin and I made a list of everything I am afraid of, and it was a full notebook page long. As we talked through them all, Darrin pointed out that many of my fears are performance based- that I'm disappointing people or disappointing God. That was quite a freeing revelation. I'm not disappointing God- He loves me and is caring for me no matter what. And people know that I have cancer and cannot do the things I used to do right now. (badly constructed sentence, sorry- too lazy to fix it). I'm sorry if they are disappointed in me, but I can't worry about it.
We head up to Mayo on the 12th of Feb. Please pray that the consultation will be good and we'll ask all the right questions. And please pray with me against all this fear. I want my joy back. We need to keep fighting. Team Robin!!
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