One year ago right now, I could barely tie my own shoes.
One year ago right now, I could not feel my feet or my fingers at all.
One year ago right now, I could hardly walk without assistance.
One year ago right now, nothing tasted good.
One year ago right now, I often could barely remember my husband's name, let alone facts about world history.
One year ago right now, I spent every Thursday in a big purple chair with poisons pumping into my body.
One year ago right now, I came home from school everyday and slept for at least 2 hours.
One year ago right now, I had given up playing drums for the foreseeable future.
One year ago right now, I had no idea I was BRCA-1 positive.
Today, I put on my favorite bright purple Converse and tied them myself.
Today, I still can't feel my feet, but I can feel my fingers enough to type well again.
Today, I actually jogged down a hallway. ( I was late to a Dr. appointment)
Today, I am looking forward to my blueberry yogurt and grapenuts at lunch time.
Today, I still have trouble with words and memory sometimes, but I'm competently teaching two world history classes and often refer to my husband by name.
Today, it is Thursday, and though I had an early morning Dr. appointment, I am at school and accomplishing lots of tasks. I'm still taking several medications, but none of them are poisons!
Today, I'll head straight from school to my tai chi class at the Cancer Center.
Today, I'm playing on two different worship teams and have a practice at 8:30 this Saturday morning.
Today, I know about my BRCA-1 status and am actively dealing with the implications.
What a difference a year makes!!
Thursday, October 29, 2015
Finally- an update!!
Hello,all. I realized that it has been quite awhile since I sent out an update about my health. Mostly that is because I've been doing great! I am 7 months cancer free and enjoying every minute of it. I think back to where I was a year ago and marvel at God's goodness and provision. My journey is far from over, though. Here's what's happening now.
I still can't really feel my fingers or feet. It's really, really annoying. It is much better than it was in my fingers, but my feet are still pretty bad. I'm doing acupuncture to try to stimulate nerve growth, but it just takes a really long time for nerves to regenerate. It is possible feeling will never fully return.
Some of my medications haven't been working correctly, so I am scheduled to have a salpingo- oompherectomy (fallopian tubes and ovaries removed) on Dec. 9th. We like to call it an oompa-loomparectomy. This is necessary because of my BRCA-1 positive status. My risk for ovarian cancer is increased, so this is a preventative measure. It is an outpatient procedure that will be done at St. Luke's. Recovery is only a week or two. We were hoping to combine it with reconstruction, but my oncologist and ob-gyn both want it done sooner since my meds aren't doing their job.
I'm still planning on finishing my reconstruction in May up at Mayo Clinic. I need to lose about 15 more pounds before that surgery. It will include 4-6 days in the hospital and then 8-10 weeks to fully recover. It's a huge surgery, but we really think it is the best option given my age. The procedure is known as the 'gold standard' in reconstruction.
When my feet and balance were much worse last winter and spring, I fell several times. At some point, one of those falls caused a tear in my right rotator cuff. Today, one of my doctors gave me a second injection to try to ease the symptoms. I can have one more of these shots, but then it will be time to surgically fix the problem. You can imagine my excitement when I learned I would need yet another surgery. I'm going to try to hold off for a year.
I told Darrin yesterday that it was hard to believe that a two centimeter large object could cause so many problems for so long. It is kind of like sin, I think. What we think is a small thing can cause problems for years hence if we don't root it out. Even once the sin is forgiven and gone, we still have to deal with consequences. it really is like a cancer.
On a really positive, exciting note, Darrin and I are headed to Turkey to visit Amy and Dennis Fulkerson!! We leave on Nov. 18th and will be back Dec. 2nd. There is an international shadow puppet festival in Bursa (where Amy and Den live) during that time. We'll be in Istanbul for a couple days, Bursa for the festival, and then to Iznik (Smyrna), Pergamum, Troy, and Gallipoli. We are SO excited. It is our gift to ourselves for surviving the last year and a half. I haven't been out of the country since 2008, and I am itching to go!
Thank you so much for walking this journey with me and my family. Your prayers and encouragement have made such a difference.
Monday, July 6, 2015
Grief
Grief is such a crazy word. It means so many things to so many people. It can be used as a remonstrance- " don't give me grief." It has been stereotyped in literature, "the grieving widow." However, one common phrase I haven't decided about yet is, "good grief!" Is grief good? It sure doesn't feel like it. Over the past month I have experienced terrible grief. Some of you will understand, and others of you will think I'm silly. But it was very real for me and very painful. Here is my story. The first part is a little PG rated.
I grieve the loss of my breasts. I miss them. They are gone forever, amputated, removed. I know eventually they will be fully reconstructed, but they will not be the same. When I express this to people, I often get the response, "What's the problem? You'll get new ones and they'll be great!" They don't understand that I have lost a part of me. The "great new ones" won't have any feeling or any response. They will be for aesthetic purposes only. People don't understand that. Writing about it even now makes me cry- I'm typing through tears. It is a LOSS- it's not an opportunity. I didn't choose this, and I would much prefer to keep the body God gave me.
I'm grieving other things that are gone forever that I can't really write about on this public blog.
While trying to process all this, our beloved cat Magnolia died of kidney failure. She was 14, and I had had her for 13 years. Darrin and I took her to the emergency vet, and we had to put her down. I sobbed so hard I'm sure the whole clinic could hear me. She was such a loving little cat, and so active- we forgot she was so old, so it was a doubly hard blow. She comforted me so much after my surgeries. She absolutely adored Andy- she always followed him around and he had to do an elaborate scheme to get into his room at night without her. She used to meet us at the door every time we came home. She was so precious to all of us. I told Darrin I didn't think I could bear it if one of the cats died while I was dealing with cancer. She died one year to the day that I started chemo. We had a funeral for her and Darrin read from the Book of Common Prayer. We all cried together. We put a little stone marker and planted some flowers on her grave. She was part of our family, and now she is gone.
I don't know why God is choosing to allow all this grief. It is sometimes overwhelming. Sometimes it causes panic attacks. Sometimes I think I'll never get over it, and other days I do great.
So- is grief 'good'? I think so, actually. It is a mechanism God has given us to process events and loss in our lives. There are stages of grief, and I find myself moving between them regularly. But there is the key word- moving. I'm not standing still- mired in my grief. I'm moving through it. Sometimes I feel like I am crawling through it, but I'm still moving. It hurts like heck, but it is a healing hurt, like debriding a wound. Or like Eustace in The Voyage of the Dawn Treader, peeling away the dragon skin to reveal the raw, new Eustace. Through all this I think there will be a new, raw Robin- one who has survived, and will thrive again. Because God is good, and that is what He does.
I grieve the loss of my breasts. I miss them. They are gone forever, amputated, removed. I know eventually they will be fully reconstructed, but they will not be the same. When I express this to people, I often get the response, "What's the problem? You'll get new ones and they'll be great!" They don't understand that I have lost a part of me. The "great new ones" won't have any feeling or any response. They will be for aesthetic purposes only. People don't understand that. Writing about it even now makes me cry- I'm typing through tears. It is a LOSS- it's not an opportunity. I didn't choose this, and I would much prefer to keep the body God gave me.
I'm grieving other things that are gone forever that I can't really write about on this public blog.
While trying to process all this, our beloved cat Magnolia died of kidney failure. She was 14, and I had had her for 13 years. Darrin and I took her to the emergency vet, and we had to put her down. I sobbed so hard I'm sure the whole clinic could hear me. She was such a loving little cat, and so active- we forgot she was so old, so it was a doubly hard blow. She comforted me so much after my surgeries. She absolutely adored Andy- she always followed him around and he had to do an elaborate scheme to get into his room at night without her. She used to meet us at the door every time we came home. She was so precious to all of us. I told Darrin I didn't think I could bear it if one of the cats died while I was dealing with cancer. She died one year to the day that I started chemo. We had a funeral for her and Darrin read from the Book of Common Prayer. We all cried together. We put a little stone marker and planted some flowers on her grave. She was part of our family, and now she is gone.
I don't know why God is choosing to allow all this grief. It is sometimes overwhelming. Sometimes it causes panic attacks. Sometimes I think I'll never get over it, and other days I do great.
So- is grief 'good'? I think so, actually. It is a mechanism God has given us to process events and loss in our lives. There are stages of grief, and I find myself moving between them regularly. But there is the key word- moving. I'm not standing still- mired in my grief. I'm moving through it. Sometimes I feel like I am crawling through it, but I'm still moving. It hurts like heck, but it is a healing hurt, like debriding a wound. Or like Eustace in The Voyage of the Dawn Treader, peeling away the dragon skin to reveal the raw, new Eustace. Through all this I think there will be a new, raw Robin- one who has survived, and will thrive again. Because God is good, and that is what He does.
Tuesday, May 19, 2015
Today is D-Day
No, it is not June 6th, the Day of Days. It is diagnosis day. At 3:07 pm, exactly one year ago, I got the call that I have 'a little cancer there.' Initially, we all thought I would be completely done with treatment by the end of the summer. Then, .67cm of cancer cells decided to take a trip into a lymph node. That changed everything. We went from 4 chemo treatments to 16, and I got every side effect in the book and 5 hospital stays, one 12 days long. I finally finished chemo on Dec. 4th. As we were getting ready to start radiation, we discovered I am BRCA-1 positive- the gene for breast and ovarian cancer. So, instead of radiation, I had a double mastectomy, and am going through a medical oompherectomy (menopause). I still have one major surgery to finish reconstruction and remove my ovaries and fallopian tubes, and then probably a few little ones to get everything adjusted. I have to wear a compression sleeve for probably the rest of my life to fight lymphedema, swelling caused by the removal of 27 lymph nodes. I currently have an infection that will probably need IV antibiotics to get under control, and I'm having an MRI on Wednesday to see what is wrong with my shoulder.
I'm so tired there are days I can barely function, falling asleep at my desk, sometimes during class. Our family is getting so busy we are rarely all home together and I miss them. Our basement flooded and we have to put in a sump pump, so for the last month we've lost a third of our living space. Shiloh graduates this weekend, and I hope I'll be able to function properly through the day. I think I am fighting depression, as I tend to cry very easily. This is not what I expected D-Day to be. I was hoping it would be a wonderful celebration of being cancer free and winning the war. Instead, I am still right in the thick of it.
HOWEVER- I have won a lot of battles. I am not the same woman I was a year ago. I am more thoughtful(thinking more deeply), I am more compassionate towards others' plights, I am much quicker to pray for people in need, I am generally quieter. I look at the world a little differently and savor it a little more. I have been abundantly blessed, so I want to return those blessings to people around me. Most of all- I have started to be able to let go of control. Time and again I have planned something just to have it all fall apart because I would get sick. I am learning that I have no control over anything. God is the one who orders our days. I used to have to know every detail about everything. Now it isn't that I don't care, but I realize there are other people who can handle things and it doesn't have to be me. This was a very freeing lesson, and I'm sorry it took me so long to learn. In fact, I'm still learning it. But I'm getting a lot better. :)
Now I am so overcome with fatigue I am falling asleep typing, so I will close, and continue to count down to 3:07 pm, the moment that changed my world.
I'm so tired there are days I can barely function, falling asleep at my desk, sometimes during class. Our family is getting so busy we are rarely all home together and I miss them. Our basement flooded and we have to put in a sump pump, so for the last month we've lost a third of our living space. Shiloh graduates this weekend, and I hope I'll be able to function properly through the day. I think I am fighting depression, as I tend to cry very easily. This is not what I expected D-Day to be. I was hoping it would be a wonderful celebration of being cancer free and winning the war. Instead, I am still right in the thick of it.
HOWEVER- I have won a lot of battles. I am not the same woman I was a year ago. I am more thoughtful(thinking more deeply), I am more compassionate towards others' plights, I am much quicker to pray for people in need, I am generally quieter. I look at the world a little differently and savor it a little more. I have been abundantly blessed, so I want to return those blessings to people around me. Most of all- I have started to be able to let go of control. Time and again I have planned something just to have it all fall apart because I would get sick. I am learning that I have no control over anything. God is the one who orders our days. I used to have to know every detail about everything. Now it isn't that I don't care, but I realize there are other people who can handle things and it doesn't have to be me. This was a very freeing lesson, and I'm sorry it took me so long to learn. In fact, I'm still learning it. But I'm getting a lot better. :)
Now I am so overcome with fatigue I am falling asleep typing, so I will close, and continue to count down to 3:07 pm, the moment that changed my world.
Thursday, May 14, 2015
FEAR
I've been having lots of problems with my right shoulder. It hurts all over. Dr. Brooks thinks it is some rotator cuff irritation. I'm starting to understand survivor's fear. I'm terrified that the cancer metastasized to my shoulder bone. I'm sure I'm being silly, but I can't get rid of the fear. I have an appointment this morning at 9:30 and 10. I get another horrible shot, labs drawn, and then a checkup with Sylvia. I have lots of questions for her. If anyone reads this in the morning hours today, please pray for peace and a good outcome. I'll try to update tonight later, as long as the internet keeps working. It was down yesterday.
GO TEAM ROBIN! We've still got a ways to go. :)
GO TEAM ROBIN! We've still got a ways to go. :)
Tuesday, May 12, 2015
Sleep?????
The combination of an internal thermostat gone haywire and a very painful shoulder has made sleep an elusive commodity. I'm worried about my arm, it keeps getting worse , it seems. I sleep best the hour before I have to get up, which really stinks. It's hard to be cheerful and keep on top of everything when I am so tired. I fight really hard everyday at school to stay awake, and on Sunday I slept through a play we went to with some friends. The few minutes I saw were really good and really funny, so I am bummed that I missed it. It is just getting more and more difficult to function again.
Tonight is the final music concert of the year. Luke and Andy both have solos, and I am joining the junior high to sing Already There, which I am very excited about. It will be nice to end the fine arts year with another great concert. :)
Tonight is the final music concert of the year. Luke and Andy both have solos, and I am joining the junior high to sing Already There, which I am very excited about. It will be nice to end the fine arts year with another great concert. :)
Sunday, May 10, 2015
The dreaded 'L' word
During my surgery, Dr. Jakub removed 27 lymph nodes under my right arm. This increased my risk of lymphedema by 25%. Unfortunately, that increase was enough to bring on extremely painful problems with my right arm. Dr. Jakub's nurse said I probably have axillary cording, or Axillary web syndrome. It's basically scar tissue forming and causing lots of pain. I see the lympedema specialist next week. Meanwhile, I'm in A LOT of pain. It's really hard to sleep, and sometimes even to move. I'm wearing my lymphedema sleeve, and it helps a little, but I am still really uncomfortable most of the time. I guess it is just a good reminder that I still have a LONG way to go until complete healing. And lymphedema is something that doesn't ever go away once it shows up. Yippee.
Time for popcorn and a movie. :)
Time for popcorn and a movie. :)
Saturday, May 9, 2015
Cats and Comfort
We have three cats I am absolutely crazy about. When I got sick, I told Darrin that none of the cats were allowed to die any time soon- I just wouldn't be able to handle it. Several months ago Chloe started licking all the fur off her belly. I noticed and was worried, so Darrin got her an appointment with the vet. I took her in and he checked her over really thoroughly since she was sitting still and being so good. Chloe has been my cat since she left her mother at 8 weeks. We've been together for 14 years. She is my special girl and we are very attached. She loves to cuddle. Finally, the vet finishes up examining her and says, "She seems to be in great physical shape. Has there been any trauma in your home lately?" I replied, "Well, I have breast cancer and have been going through lots of really hard treatment." He said, "That's it! Your cat is anxious and depressed because you've been sick!" I could hardly believe it. I felt so bad that my sweet cat was so worried about her mama. You non pet people can laugh, but there is a special bond between animals and their people.
This morning (OK, close to noon!), I was gently awakened when another cat, Magnolia gently ran her paw across my face to let me know she was there. Mags and Chloe are sisters, though I haven't had Mags quite as long as Chloe. The girls have brought me so much comfort over the last year. They seem able to intuit how I am feeling and they come to cuddle all the time- sometimes right on top of me, sometimes right next to me, but always close enough so I know they are there to provide comfort.
I've already blogged about Sydney, the therapy cat who sat with me when I had a blood transfusion.
These animals and the comfort they provide are just a reflection of God's comfort- a physical manifestation of his love and care for us. He always knows exactly how we feel and is within reach for comfort at all times. Often, He knows better than we do that we need His comfort. He has given us cats and dogs and other pets to cuddle with to get the physical side of the mental, emotional, and spiritual comfort He provides.
Today is a day I've needed to feel that comfort a lot- I found my lump one year ago on the night before Mother's Day. Time to find a kitty.
This morning (OK, close to noon!), I was gently awakened when another cat, Magnolia gently ran her paw across my face to let me know she was there. Mags and Chloe are sisters, though I haven't had Mags quite as long as Chloe. The girls have brought me so much comfort over the last year. They seem able to intuit how I am feeling and they come to cuddle all the time- sometimes right on top of me, sometimes right next to me, but always close enough so I know they are there to provide comfort.
I've already blogged about Sydney, the therapy cat who sat with me when I had a blood transfusion.
These animals and the comfort they provide are just a reflection of God's comfort- a physical manifestation of his love and care for us. He always knows exactly how we feel and is within reach for comfort at all times. Often, He knows better than we do that we need His comfort. He has given us cats and dogs and other pets to cuddle with to get the physical side of the mental, emotional, and spiritual comfort He provides.
Today is a day I've needed to feel that comfort a lot- I found my lump one year ago on the night before Mother's Day. Time to find a kitty.
Friday, May 8, 2015
Public Speaking
I've wondered some if the Lord would use my cancer to bring about public speaking opportunities. I am one of those weird people who really enjoy speaking to large groups of people. Earlier this week I got a phone call from the social worker at the Cancer Center, wondering if I would speak to the donors at the annual foundation dinner in June. I was absolutely thrilled! I'm meeting with the coordinator next week to go over requirements and such. I really can't wait to sing the praises of the people at the Cancer Center. They are so amazing. I'm really excited to do this speaking- I hope I get more than 2 minutes!
Today in chapel I got to talk to all the secondary kids about the last year. It went well, I think. I opened up for questions at the end, and they asked some really good ones. One of the girls didn't know what a mastectomy was, so I explained. Then an adorable little 6th grade boy who heard the word wrong, asked me how long my breastectomy took. :) OH, did I laugh. Not at him- I didn't mean to embarrass him, but it was just so cute. He apologized several different times throughout the rest of the day. :) He was really embarrassed. But I think it was good- kids were getting questions answered that they were afraid to ask but really wanted to know.
I had another young man come up to apologize to me. He had given me some trouble earlier in the year, and he apologized for causing trouble while I was dealing with cancer. It was very touching.
So, maybe these couple of speaking engagements will lead to some more. I would love to talk to Bible studies, women's retreats, lunches and teas- any opportunity to be able to talk about my journey and the incredible goodness of God through it all. I am still overwhelmed by His goodness and blessing. If you are looking for someone to speak at an event. . . . :)
Today in chapel I got to talk to all the secondary kids about the last year. It went well, I think. I opened up for questions at the end, and they asked some really good ones. One of the girls didn't know what a mastectomy was, so I explained. Then an adorable little 6th grade boy who heard the word wrong, asked me how long my breastectomy took. :) OH, did I laugh. Not at him- I didn't mean to embarrass him, but it was just so cute. He apologized several different times throughout the rest of the day. :) He was really embarrassed. But I think it was good- kids were getting questions answered that they were afraid to ask but really wanted to know.
I had another young man come up to apologize to me. He had given me some trouble earlier in the year, and he apologized for causing trouble while I was dealing with cancer. It was very touching.
So, maybe these couple of speaking engagements will lead to some more. I would love to talk to Bible studies, women's retreats, lunches and teas- any opportunity to be able to talk about my journey and the incredible goodness of God through it all. I am still overwhelmed by His goodness and blessing. If you are looking for someone to speak at an event. . . . :)
Thursday, May 7, 2015
Giving gifts
5 years ago, just a few months after we got married, we decided my husband would quit his job and become a professional storyteller. It was the best decision we ever made. Of course, when he left his job he left his income, so while he was starting out, we were living pretty much on what I make as a private school teacher (not much!) ;) We were so thankful we had taken Dave Ramsey's Financial Peace University before we got married. We had no debt but the house and we knew how to budget.
One of the things we chose to do was to have Darrin start going back to Biolife to donate plasma. Donors get $20-$25 each time they donate, and you can go twice a week. There are also sometimes bonuses and things like that. They gave us a debit card that is loaded each time he donates. That money is specifically earmarked for gift giving and special family occasions. Last weekend, we took the kids to The Avengers and then to Red Robin for supper. We used the Biolife card. I always tease the children that all their gifts and special things are paid for with Dad's blood. They literally are. Because he gives his blood (or plasma, which is in your blood) we are able to have and do fun and special things.
That really got me thinking. There was Another who gave up His blood, not just so we could do fun and special things, but so we could live eternally in paradise with Him. Of course he didn't just give up his blood, he gave up his life for us. To enable us to join Him as a child of God, with eternal life and blessings. As my body betrays me more and more, I just long for the day of Jesus' return. Because He gave His blood, I know that my pain and fear and frustration are only temporary. I know I win in the end. We all do, if our faith is in Jesus, the one who gave his blood to give us the very best gift of all- eternal life with Him in Heaven. AMEN.
One of the things we chose to do was to have Darrin start going back to Biolife to donate plasma. Donors get $20-$25 each time they donate, and you can go twice a week. There are also sometimes bonuses and things like that. They gave us a debit card that is loaded each time he donates. That money is specifically earmarked for gift giving and special family occasions. Last weekend, we took the kids to The Avengers and then to Red Robin for supper. We used the Biolife card. I always tease the children that all their gifts and special things are paid for with Dad's blood. They literally are. Because he gives his blood (or plasma, which is in your blood) we are able to have and do fun and special things.
That really got me thinking. There was Another who gave up His blood, not just so we could do fun and special things, but so we could live eternally in paradise with Him. Of course he didn't just give up his blood, he gave up his life for us. To enable us to join Him as a child of God, with eternal life and blessings. As my body betrays me more and more, I just long for the day of Jesus' return. Because He gave His blood, I know that my pain and fear and frustration are only temporary. I know I win in the end. We all do, if our faith is in Jesus, the one who gave his blood to give us the very best gift of all- eternal life with Him in Heaven. AMEN.
Unpredictabiity
OK- so I've learned I should not say I will do anything everyday or make any long term commitments while recovering from cancer. It wants to be in control, and the minute I try to assert myself, it reminds me who is boss. :) I had a really hard day on Wednesday, for two reasons, I think. First, I am developing lymphedema in my right arm. It is incredibly painful and I hadn't slept well for several days. I'm going to the lymphedema clinic sometime next week, I hope. Meanwhile, I am wearing a compression sleeve that very well could become part of my permanent daily wardrobe. Yippee.
The other thing that actually sent me into panic attacks was attending a breast reconstruction event Tuesday night. It was supposed to be informative, and it was, but it all the wrong ways. I think most of us in the room were horrified by his pictures and descriptions of how things are done and what happens if it doesn't go right. It would have been great for other physicians, but for actual cancer patients, it was too much on top of an already very scary life. I literally had two panic attacks about it on Wednesday, and I was out of my anxiety med. We got that refilled in the afternoon, and I started feeling much better.
Sometimes I get going feeling good, and then I crash and burn because I forget that I still have LOTS of healing to do. It's such a slow, frustrating process. But this time I went 2 whole weeks feeling pretty good! I feel good again today, so we'll start the clock again and see how long I can go this time. :)
What I've really been wanting to write about is worthy of its own post, so I think I'll end here and start a new post about my topic. ;)
The other thing that actually sent me into panic attacks was attending a breast reconstruction event Tuesday night. It was supposed to be informative, and it was, but it all the wrong ways. I think most of us in the room were horrified by his pictures and descriptions of how things are done and what happens if it doesn't go right. It would have been great for other physicians, but for actual cancer patients, it was too much on top of an already very scary life. I literally had two panic attacks about it on Wednesday, and I was out of my anxiety med. We got that refilled in the afternoon, and I started feeling much better.
Sometimes I get going feeling good, and then I crash and burn because I forget that I still have LOTS of healing to do. It's such a slow, frustrating process. But this time I went 2 whole weeks feeling pretty good! I feel good again today, so we'll start the clock again and see how long I can go this time. :)
What I've really been wanting to write about is worthy of its own post, so I think I'll end here and start a new post about my topic. ;)
Saturday, May 2, 2015
My kids are growing up!
I actually had another blog post planned for today, but the day completely got away from me. We had to go tux shopping for Andy because he got asked to prom! He's going with a really great girl. They did both speech contest and music contest together and are friends. I'm excited he is going and I think they will have a great time.
This afternoon we went over to a local church in town to help with their Saturday Evening Meal Program (SEMP). A dear friend of ours has run it for at least 25 years. We wanted a way to serve the poor in our community, and this is a great opportunity. We served a really nice meal to about 80 people tonight. On busy weekends, they serve double that. Last year when Darrin and I read through the Bible in a year, Darrin noticed how often the Lord talks about the poor. In both the Old and New Testaments, we are told to look after the poor, the widows, and the orphans. This has become very important to us. It was great to see the boys jump right in to helping. They were calling people sir and ma'am, which I could tell really pleased a lot of them. It was a mark of respect they probably don't get very often.
Tonight Darrin and I did Shiloh's senior board for Senior Sunday at church tomorrow. I've been thinking about it for 2 years, but it just got finished about 10 minutes ago. :) Amazing how that happens, isn't it?
Anyway, I PROMISE that tomorrow I will have a meaningful post. I'm excited about it and want to give it the time I need to to say everything right. :) See you tomorrow!
This afternoon we went over to a local church in town to help with their Saturday Evening Meal Program (SEMP). A dear friend of ours has run it for at least 25 years. We wanted a way to serve the poor in our community, and this is a great opportunity. We served a really nice meal to about 80 people tonight. On busy weekends, they serve double that. Last year when Darrin and I read through the Bible in a year, Darrin noticed how often the Lord talks about the poor. In both the Old and New Testaments, we are told to look after the poor, the widows, and the orphans. This has become very important to us. It was great to see the boys jump right in to helping. They were calling people sir and ma'am, which I could tell really pleased a lot of them. It was a mark of respect they probably don't get very often.
Tonight Darrin and I did Shiloh's senior board for Senior Sunday at church tomorrow. I've been thinking about it for 2 years, but it just got finished about 10 minutes ago. :) Amazing how that happens, isn't it?
Anyway, I PROMISE that tomorrow I will have a meaningful post. I'm excited about it and want to give it the time I need to to say everything right. :) See you tomorrow!
Friday, May 1, 2015
I'm back!
I'm back! I'm going to try talking my blog instead of typing it tonight just for fun to see how it goes. So if there are weird typos I don't catch, or if my blog doesn't sound the way it always sounds it's because I'm talking it rather than writing it. After several months of absence it's time to get back to the blog and talk about my experiences. I'm committing to blog every day in the month of May so I can cover all of the topics and everything I want to talk about. It's been a tough several months but God has been very, very kind to us and has taught me and Darrin and our boys an awful lot. I'm finally starting to feel better for real and back to my normal self.
Today's entry is going to be short, because it was track and field day at school. We had a great day and the weather was practically perfect. After school we took a bunch of boys to go see The Avengers. It was a really great movie and we had a great time. Luke went to spend the night with a friend so we took Shiloh and Andy out to dinner and just got home a little while ago. So check back tomorrow for a longer entry and the start of the retelling of my journey of the last few months. Have a great night!
Today's entry is going to be short, because it was track and field day at school. We had a great day and the weather was practically perfect. After school we took a bunch of boys to go see The Avengers. It was a really great movie and we had a great time. Luke went to spend the night with a friend so we took Shiloh and Andy out to dinner and just got home a little while ago. So check back tomorrow for a longer entry and the start of the retelling of my journey of the last few months. Have a great night!
Thursday, March 5, 2015
Surviving
A lot of people ask me how I'm doing. I'm learning to take a moment and answer honestly. I'm obviously not going to go into lots of detail about anything, unless they ask, but I want to be real. If I am struggling, I'm going to say so and ask for their prayers. If I'm doing well, I'm going to rejoice with them. And it's different from day to day- sometimes hour to hour. But I have to be real. Far too often Christians want to hide their pain and pretend things are ok. How silly is that?? Really, as believers in the Creator of the Universe, the God who heals, loves, cares, provides grace and strength when we need it- why wouldn't we be honest and ask for the prayer we desperately need?
I'm surviving without my husband. :) I knew I would, but I sure didn't want to. I didn't want to have to rely on God. I even told Him so. I told Him I'd rather miss out on blessings from Him than be without my husband. Pretty dumb, right? Right. Fortunately, God graciously overlooked my stupidity and heaped on the blessings and the grace over the last couple of days. He is unendingly good to me, and I so don't deserve it sometimes.
I'm surviving without my husband. :) I knew I would, but I sure didn't want to. I didn't want to have to rely on God. I even told Him so. I told Him I'd rather miss out on blessings from Him than be without my husband. Pretty dumb, right? Right. Fortunately, God graciously overlooked my stupidity and heaped on the blessings and the grace over the last couple of days. He is unendingly good to me, and I so don't deserve it sometimes.
Wednesday, March 4, 2015
Lots of vignettes
The visit to Mayo was very good. Most likely no radiation- which is a huge deal, because they would have wanted to do it there at Mayo. My first surgery, the double mastectomy, is set for March 16th. We did all the pre-prep stuff and it is actually real. More on that later.
I FOUND MY WEDDING RING!!! Well, God sent it back to me. A woman who works for the county government found it in the skywalk. She took it back to the secretary at her work, and the secretary went all out trying to find me. She left her name and number everywhere, and finally , when we returned 2 weeks later, I asked about it at the hotel desk and we were reunited! The lady, Nancy, lost her ring around her 5 anniversary and never found it. She remembered how awful it was so she did everything she could to find me. It was quite a gift to get it back. Though we had already gone to look at rings and I found one I really liked. . . . Oh, well. :) I really do love my little ring.
I had my first haircut last Thursday. I barely needed it, but it was a little scruffy.It was great to see Chrystal again, too. She's been an important part of this journey.
Saturday we took our Individual Events speech team to Tipton for district contest. Andy and one other student are advancing to State in storytelling. Imagine that! :) We are very proud of all of them.
We got home from conference about 2, and I slept all that evening and through the next day until 7. I'm glad to be working, but it completely wipes me out. I hate sacrificing time with my family. I think it will get better as our schedule keeps calming down.
Yesterday was Darrin's birthday and he left for Nebraska to do a festival. He'll be home late tomorrow night, just in time for our 5th anniversary on Friday.
Now- if you just want an update on things going on and the happy stuff- stop reading here. If you want the real, raw stuff, keep going.
I can't stop crying. I try to keep it together at school, but it takes supreme effort from moment to moment. I'm so incredibly scared. This upcoming surgery will change my life forever. It will never be the same, and I'm not ready for that. I will go to sleep with a complete body, and will wake up with a mutilated one. I do not yet have the strength to deal with that. Also- it is less than two weeks away, and God saw fit to remove my husband, my rock, my sea anemone, for three days. I know he wants me to rely on Him for all things, but it is truly hard. He has been writing the playlist for 101.9 lately, though. Every time I've turned it on in the last couple of days, all the songs are about strength, peace, God's power, things I really need to hear and remember.
I'm writing this at school while I don't have students. Just this minute a student brought me a card that was perfectly timed. Her words reminded me how important it is to fight! and to overcome this for the glory of the Lord. I also got a card from a friend of a friend- a lady I've never met. Her words were also so encouraging. God is really trying to take care of me, and sometimes I am not doing a good job of letting him. I think we all do that, sometimes. We either forget to, or don't want to let God be in charge. Even with God in charge doesn't guarantee that it isn't hard.
I'm too tied to write more right now. :)
I FOUND MY WEDDING RING!!! Well, God sent it back to me. A woman who works for the county government found it in the skywalk. She took it back to the secretary at her work, and the secretary went all out trying to find me. She left her name and number everywhere, and finally , when we returned 2 weeks later, I asked about it at the hotel desk and we were reunited! The lady, Nancy, lost her ring around her 5 anniversary and never found it. She remembered how awful it was so she did everything she could to find me. It was quite a gift to get it back. Though we had already gone to look at rings and I found one I really liked. . . . Oh, well. :) I really do love my little ring.
I had my first haircut last Thursday. I barely needed it, but it was a little scruffy.It was great to see Chrystal again, too. She's been an important part of this journey.
Saturday we took our Individual Events speech team to Tipton for district contest. Andy and one other student are advancing to State in storytelling. Imagine that! :) We are very proud of all of them.
We got home from conference about 2, and I slept all that evening and through the next day until 7. I'm glad to be working, but it completely wipes me out. I hate sacrificing time with my family. I think it will get better as our schedule keeps calming down.
Yesterday was Darrin's birthday and he left for Nebraska to do a festival. He'll be home late tomorrow night, just in time for our 5th anniversary on Friday.
Now- if you just want an update on things going on and the happy stuff- stop reading here. If you want the real, raw stuff, keep going.
I can't stop crying. I try to keep it together at school, but it takes supreme effort from moment to moment. I'm so incredibly scared. This upcoming surgery will change my life forever. It will never be the same, and I'm not ready for that. I will go to sleep with a complete body, and will wake up with a mutilated one. I do not yet have the strength to deal with that. Also- it is less than two weeks away, and God saw fit to remove my husband, my rock, my sea anemone, for three days. I know he wants me to rely on Him for all things, but it is truly hard. He has been writing the playlist for 101.9 lately, though. Every time I've turned it on in the last couple of days, all the songs are about strength, peace, God's power, things I really need to hear and remember.
I'm writing this at school while I don't have students. Just this minute a student brought me a card that was perfectly timed. Her words reminded me how important it is to fight! and to overcome this for the glory of the Lord. I also got a card from a friend of a friend- a lady I've never met. Her words were also so encouraging. God is really trying to take care of me, and sometimes I am not doing a good job of letting him. I think we all do that, sometimes. We either forget to, or don't want to let God be in charge. Even with God in charge doesn't guarantee that it isn't hard.
I'm too tied to write more right now. :)
Monday, February 23, 2015
The Eye of the Hurricane
So my appointment free week ended up with a dentist appointment. :) I called and they happened to have an opening with my hygienist the next day. I've gone through several dentists, but Michelle has cleaned my teeth since my first dentist visit. :) She was so upset about my cancer. We had a good talk about it. (Before she cleaned my teeth!) It is so great to have prayers and support from so many places.
I had a great week at school, but it completely wiped me out. I slept until 3 on Saturday, and napped on Sunday from about 2 until 7. I missed Bible Study. I hate losing my family/friend time to this weariness. I'm so glad to be teaching again, but I am definitely paying for it.
Luke's basketball season ends tonight at Springville. Having that over will really help our evenings. I've really enjoyed watching him play, though. He has started to really enjoy playing, and it shows. He's scored 10 points so far this season, and he's had a few steals and some good rebounds. I'm really, really proud of him. I hope he'll play in high school. I think he could eventually be pretty good if he keeps at it.
My mom found out late last week that she is the BRCA-1 carrier. She will see my oncologist, Dr. Buntinas, who will keep an eye on her. It's pretty amazing that she made it to 66 and hasn't had any cancer. She feels guilty that I had to be the one to discover it and deal with cancer. I told her God's plan is perfect and He worked it out exactly how He wanted it. He's provided everything we need, and although it has been such a tough road, it's brought our family closer to each other and closer to the Lord. What could be better than that?
We head up to Mayo tomorrow for 4 appointments on Wednesday. The most important is with the radiation oncologist. There is a possibility I'll have to do radiation, and a small possibility I'll have to do it at Mayo. That would mean 6 weeks at Mayo, coming home on the weekends. If I do have to have it, I'm hoping it can be at Hall- Perrine or at least at the University. I'm looking forward to getting some answers and getting surgery nailed down.
I feel like I am in the eye of the hurricane. Things are calm right now, but soon the storm will start raging again. Even now, I'm dealing with lots of pain all the time. My pain patch doesn't even seem to touch it. I'm not sure what's going on, but I don't like it much. I'll mention it at Mayo and see what they say.
Thanks for sticking with me through the storm!
I had a great week at school, but it completely wiped me out. I slept until 3 on Saturday, and napped on Sunday from about 2 until 7. I missed Bible Study. I hate losing my family/friend time to this weariness. I'm so glad to be teaching again, but I am definitely paying for it.
Luke's basketball season ends tonight at Springville. Having that over will really help our evenings. I've really enjoyed watching him play, though. He has started to really enjoy playing, and it shows. He's scored 10 points so far this season, and he's had a few steals and some good rebounds. I'm really, really proud of him. I hope he'll play in high school. I think he could eventually be pretty good if he keeps at it.
My mom found out late last week that she is the BRCA-1 carrier. She will see my oncologist, Dr. Buntinas, who will keep an eye on her. It's pretty amazing that she made it to 66 and hasn't had any cancer. She feels guilty that I had to be the one to discover it and deal with cancer. I told her God's plan is perfect and He worked it out exactly how He wanted it. He's provided everything we need, and although it has been such a tough road, it's brought our family closer to each other and closer to the Lord. What could be better than that?
We head up to Mayo tomorrow for 4 appointments on Wednesday. The most important is with the radiation oncologist. There is a possibility I'll have to do radiation, and a small possibility I'll have to do it at Mayo. That would mean 6 weeks at Mayo, coming home on the weekends. If I do have to have it, I'm hoping it can be at Hall- Perrine or at least at the University. I'm looking forward to getting some answers and getting surgery nailed down.
I feel like I am in the eye of the hurricane. Things are calm right now, but soon the storm will start raging again. Even now, I'm dealing with lots of pain all the time. My pain patch doesn't even seem to touch it. I'm not sure what's going on, but I don't like it much. I'll mention it at Mayo and see what they say.
Thanks for sticking with me through the storm!
Tuesday, February 17, 2015
Back to School
I started back to school full time yesterday. It was really good to be back. It's great to have my classroom back and I'm very much enjoying getting back to my curriculum. I just about have my grade book all caught up, which is good seeing as next week is the end of 3rd quarter. I can hardly believe it!
Last night Darrin and I got to go see Alton Brown Live. Some friends of ours bought tickets, but then they moved out of town and couldn't use them, so they passed them to us. And these weren't just any tickets- these were the meet and greet, 2nd row tickets! We've never watched Alton Brown's show, Good Eats, but we think we will now! ( he is a celebrity chef). He was very friendly when we met him and he signed some things for us. The show was absolutely hilarious. I think I smiled for the whole two and a half hours. He is a masterful storyteller and had us hanging on every hilarious word. It was exactly what I needed after such a hard weekend. God is so good. He had that little respite planned out for us from the very beginning. He knew we would need to laugh and have time together. It was perfect.
The rest of the week is very quiet. I think this is the first week in 7 months that I do not have ANY appointments. I am really excited about that. :) Starting next week they pick up again, so I am going to savor this week. It feels like an oasis in the midst of our desert. We are filling back up so we can face what is coming. :) Go, Team Robin!!
Last night Darrin and I got to go see Alton Brown Live. Some friends of ours bought tickets, but then they moved out of town and couldn't use them, so they passed them to us. And these weren't just any tickets- these were the meet and greet, 2nd row tickets! We've never watched Alton Brown's show, Good Eats, but we think we will now! ( he is a celebrity chef). He was very friendly when we met him and he signed some things for us. The show was absolutely hilarious. I think I smiled for the whole two and a half hours. He is a masterful storyteller and had us hanging on every hilarious word. It was exactly what I needed after such a hard weekend. God is so good. He had that little respite planned out for us from the very beginning. He knew we would need to laugh and have time together. It was perfect.
The rest of the week is very quiet. I think this is the first week in 7 months that I do not have ANY appointments. I am really excited about that. :) Starting next week they pick up again, so I am going to savor this week. It feels like an oasis in the midst of our desert. We are filling back up so we can face what is coming. :) Go, Team Robin!!
Saturday, February 14, 2015
A Little Perspective
Last night I cried and cried and cried. I sat in front of the tv from about 6 until 10:30. The Charlie Brown Valentine Specials were on. That provided some good distraction. I did sleep really well, and we had a really nice family day today, so tonight I have a little perspective.
Here is what we learned. I will go back to Mayo on Feb.25 to meet with a radiation oncologist. He will decide if I need radiation on my lymph nodes. Apparently, there is an 80% chance that the chemo did not kill any cancer cells that might be lurking in the lymph nodes. If the Dr. decides I need radiation, it will happen between two surgeries. The first surgery is scheduled for Monday, March 16th. That will be the mastectomy. The plastic surgeon will then place expanders under the skin and above the muscle. If he is unable to do it this way because the skin is not healthy or thick enough, then he will put the expanders under the muscle. Doing it this way I think will make the DIEP procedure either harder or impossible.
I will be in the hospital overnight. If I have to have radiation, it will take place after I have healed from this surgery. Having the BRCA-1 gene means they can't radiate breast tissue, but they can radiate lymph nodes with no risk. If I do radiation, I should be able to do it here at Hall-Perrine. Hopefully they won't want me to do it up at Mayo. It is 6 weeks, everyday.
If I have radiation, they want to wait 6-9 months before finishing reconstruction. That news was a huge bummer. Please pray that radiation will not be necessary. I definitely want to do whatever I need to to keep the cancer from returning, but I really would love to skip the radiation part. :)
If I don't have radiation, we can do the rest of the reconstruction on a much quicker time frame. A lot of things also depend on the pathology of the breast tissue when they remove it. A pathologist will examine it during surgery to make sure the Dr. doesn't need to remove more lymph nodes, and he will also examine it much more closely after surgery.
Sometime between these surgeries I will have a hysterectomy. I will hopefully be able to do that here in town with my gynecologist. We haven't even started talking about that.
Other things that are upsetting- I will lose all feeling from under my arms and all the way across my chest. I can't really even imagine that. I will have several drains to deal with for at least a week, probably two, at home. They told me sleeping will be very difficult and uncomfortable. The biggest bummer- it looks like we still have about a year to go before we are done with this. Who would have imagined that such a little thing- a 2 cm tumor- could cause so much anguish?
There are also some good things. I will be back at school full time starting Monday. I can't wait to get back to all my classes. I really miss my kids. My surgery is one week before spring break, so I have plenty of time to recover without missing too much more school. They want me up and around and doing things. I just can't lift anything over 10 pounds.
I think that basically covers everything. Feel free to ask if you want to know more. I am still absolutely devastated about losing my wedding ring. It was very inexpensive, so at least we didn't lose a huge investment. But I really, really loved my little ring. Losing it on top of all the bad, unexpected, and confusing news made Friday really awful. But, as my dear, wise Father reminded me, every day is a good day, just some are better than others. That is true, because we have a Heavenly Father who loves us more than we could possibly imagine and He is taking care of us always. He can handle my tears and understands my grief. He is already there, and he is bringing me along according to His plan and His timing. Praise Him for that assurance!
Here is what we learned. I will go back to Mayo on Feb.25 to meet with a radiation oncologist. He will decide if I need radiation on my lymph nodes. Apparently, there is an 80% chance that the chemo did not kill any cancer cells that might be lurking in the lymph nodes. If the Dr. decides I need radiation, it will happen between two surgeries. The first surgery is scheduled for Monday, March 16th. That will be the mastectomy. The plastic surgeon will then place expanders under the skin and above the muscle. If he is unable to do it this way because the skin is not healthy or thick enough, then he will put the expanders under the muscle. Doing it this way I think will make the DIEP procedure either harder or impossible.
I will be in the hospital overnight. If I have to have radiation, it will take place after I have healed from this surgery. Having the BRCA-1 gene means they can't radiate breast tissue, but they can radiate lymph nodes with no risk. If I do radiation, I should be able to do it here at Hall-Perrine. Hopefully they won't want me to do it up at Mayo. It is 6 weeks, everyday.
If I have radiation, they want to wait 6-9 months before finishing reconstruction. That news was a huge bummer. Please pray that radiation will not be necessary. I definitely want to do whatever I need to to keep the cancer from returning, but I really would love to skip the radiation part. :)
If I don't have radiation, we can do the rest of the reconstruction on a much quicker time frame. A lot of things also depend on the pathology of the breast tissue when they remove it. A pathologist will examine it during surgery to make sure the Dr. doesn't need to remove more lymph nodes, and he will also examine it much more closely after surgery.
Sometime between these surgeries I will have a hysterectomy. I will hopefully be able to do that here in town with my gynecologist. We haven't even started talking about that.
Other things that are upsetting- I will lose all feeling from under my arms and all the way across my chest. I can't really even imagine that. I will have several drains to deal with for at least a week, probably two, at home. They told me sleeping will be very difficult and uncomfortable. The biggest bummer- it looks like we still have about a year to go before we are done with this. Who would have imagined that such a little thing- a 2 cm tumor- could cause so much anguish?
There are also some good things. I will be back at school full time starting Monday. I can't wait to get back to all my classes. I really miss my kids. My surgery is one week before spring break, so I have plenty of time to recover without missing too much more school. They want me up and around and doing things. I just can't lift anything over 10 pounds.
I think that basically covers everything. Feel free to ask if you want to know more. I am still absolutely devastated about losing my wedding ring. It was very inexpensive, so at least we didn't lose a huge investment. But I really, really loved my little ring. Losing it on top of all the bad, unexpected, and confusing news made Friday really awful. But, as my dear, wise Father reminded me, every day is a good day, just some are better than others. That is true, because we have a Heavenly Father who loves us more than we could possibly imagine and He is taking care of us always. He can handle my tears and understands my grief. He is already there, and he is bringing me along according to His plan and His timing. Praise Him for that assurance!
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!!
Subscribe to:
Posts (Atom)