Last night I sat down to read about my chemo drugs and my final pathology report. I just want to share one really wonderful little bit with you. Here we go:
"Nuclear Pleomorphism: Score 3: Vesicular nuclei, often with prominent nucleoli, exhibiting marked variation in size and shape, occasionally with very large and bizarre forms."
I laughed and laughed. "Very large and bizarre forms." Of course, we're talking large on the cellular level, but I still just envision huge, weirdo shapes from a Picasso painting. :) You can always count on me to be described as bizarre- even my cells!!
We're off to the Farmer's Market this morning. It might be the only one I get to enjoy this summer. The next one is right after chemo starts. So I'm going to eat whatever I want. :) And I'm going to look for cute head scarves.
I don't think people in Cedar Rapids always recognize how incredible our city has become in the last few years. We rose from a devastating tragedy to be better, stronger, and prettier. I don't consider cancer to be a devastating tragedy in any way, but it is fun to think how the Lord will work to make me better and stronger through it. And everyone tells me that my hair might grow back curly and really fun. That would be great! I've always envied my college roommate's hair. Sarah Denhart has the best hair of anyone I know. :)
Get out and enjoy our city today! There is the Downtown Farmer's Market, free trolleys over to NewBo and back, and this afternoon there is a big Asian Festival at the ampitheater. I hope there are dumplings!
Here's to a great Saturday.
Saturday, June 7, 2014
Friday, June 6, 2014
Today I Got Cancer
Sorry for the lateness of this post. We took the kids to Red Robin ( our favorite!) to celebrate summer.
At 2:45 we met with Dr. Buntinas. I was looking forward to and dreading this appointment at the same time. We went over pathology first. The tumor was exactly 2 cm, which puts it right between stage one and stage two for size. It was high grade, meaning aggressive. It had micrometastisized to one of the two sentinel nodes. Because of the metastasis, it became a stage 1B or stage 2B cancer. The B indicates lymph node involvement.
I would have had to have a short round of chemo even if it weren't in the lymph nodes due to its aggressive nature. However, because it is in the nodes, I will have to do twenty (yes, you read that right!) weeks of chemo, followed by a short break and then 6 weeks of radiation. I should be finished with those treatments right at the end of the calendar year.
Here's what will happen:
Sometime in the next two weeks, I'll have a minor outpatient surgery to insert a port. This port will be under the skin, and will enable the chemo treatments to be administered much more easily and less painfully. On Tuesday the 10th, I'll see my surgeon, Dr. Kerri Nowell, for a postop visit. Then, right after that, I'll see her husband, Dr. Andrew Nowell, who will evaluate and set up a time to do the surgery to place the port.
We want that all to happen before June 19th. On the 17th, I will meet with the chemo educator who will teach us all about chemo and side effects. On the 19th, I will have my first chemo treatment. On the 20th, I will go in for a shot to boost my white blood counts so they can do a treatment every two weeks instead of every three. I am going to be in a clinical study to evaluate bone pain from those shots. I don't think I'll get any benefit, but if it helps them figure out how to make them less painful in the future, that's great.
The first round of chemo will be the nasty one. I will have a combo of two drugs once every two weeks for a total of 4 treatments and 4 shots (8 weeks). Then I will have a single drug once a week for 12 weeks. Each treatment takes between 3-4 hours.
So- today I got cancer. Now it's real. I was expecting chemo, but I was not expecting 20 weeks of it. We will have to deal with this during the school year, which will not be much fun. BUT- we have already worked the treatment schedule around so that I can go on both little trips we had planned for the summer. This is really great news.
Tonight's email is simply information. I have lots of thoughts rolling about in my brain that I'd like to share later. Thanks for your prayers and support! Don't forget to pray for Darrin, too. GO TEAM ROBIN!
At 2:45 we met with Dr. Buntinas. I was looking forward to and dreading this appointment at the same time. We went over pathology first. The tumor was exactly 2 cm, which puts it right between stage one and stage two for size. It was high grade, meaning aggressive. It had micrometastisized to one of the two sentinel nodes. Because of the metastasis, it became a stage 1B or stage 2B cancer. The B indicates lymph node involvement.
I would have had to have a short round of chemo even if it weren't in the lymph nodes due to its aggressive nature. However, because it is in the nodes, I will have to do twenty (yes, you read that right!) weeks of chemo, followed by a short break and then 6 weeks of radiation. I should be finished with those treatments right at the end of the calendar year.
Here's what will happen:
Sometime in the next two weeks, I'll have a minor outpatient surgery to insert a port. This port will be under the skin, and will enable the chemo treatments to be administered much more easily and less painfully. On Tuesday the 10th, I'll see my surgeon, Dr. Kerri Nowell, for a postop visit. Then, right after that, I'll see her husband, Dr. Andrew Nowell, who will evaluate and set up a time to do the surgery to place the port.
We want that all to happen before June 19th. On the 17th, I will meet with the chemo educator who will teach us all about chemo and side effects. On the 19th, I will have my first chemo treatment. On the 20th, I will go in for a shot to boost my white blood counts so they can do a treatment every two weeks instead of every three. I am going to be in a clinical study to evaluate bone pain from those shots. I don't think I'll get any benefit, but if it helps them figure out how to make them less painful in the future, that's great.
The first round of chemo will be the nasty one. I will have a combo of two drugs once every two weeks for a total of 4 treatments and 4 shots (8 weeks). Then I will have a single drug once a week for 12 weeks. Each treatment takes between 3-4 hours.
So- today I got cancer. Now it's real. I was expecting chemo, but I was not expecting 20 weeks of it. We will have to deal with this during the school year, which will not be much fun. BUT- we have already worked the treatment schedule around so that I can go on both little trips we had planned for the summer. This is really great news.
Tonight's email is simply information. I have lots of thoughts rolling about in my brain that I'd like to share later. Thanks for your prayers and support! Don't forget to pray for Darrin, too. GO TEAM ROBIN!
Thursday, June 5, 2014
The gang's all here!
The boys came home this morning!!! I was very excited to see them. They love what we did in the Lego Lounge. It's really nice to have us all together again. We're officially kicking off summer break tomorrow with a trip to Red Robin for supper. :)
Today I got a few more appointments set up. I see the genetics counselor, Shana, tomorrow morning. Then I see Dr. Buntinas (oncologist) at 2:45. Next week, I see Dr. Nowell (surgeon) on Tuesday morning. I'll see the radiation oncologist on Thursday morning over at Hall Perrine Cancer Center. My speech kids filmed part of their movie "Solace" there. It's a really nice facility. I remember talking to Jeff Cash as he showed us around- joking that we hoped we'd never have to be there again. Ah, the irony. :)
After Dr. Nowell clears me for activity, I'll have appointments with the dietitian and the exercise guy. Pilates, here I come!
Joel DeSousa stopped by to chat today. We were so thrilled. Please feel free to drop in and say hi anytime! We're right on "C" Ave. We'll be home a lot this summer, so chances are you'll find at least one of us around.
I continue to get wonderful cards and notes of encouragement in the mail. Thank you so much. Each one is so precious and means a lot. I'm starting a file. If you know Debbie Lord, ask her about her 3rd grade sense of humor! ;)
Tomorrow the blog will hopefully be full of information about a treatment plan. Until then- GO TEAM ROBIN!!
Today I got a few more appointments set up. I see the genetics counselor, Shana, tomorrow morning. Then I see Dr. Buntinas (oncologist) at 2:45. Next week, I see Dr. Nowell (surgeon) on Tuesday morning. I'll see the radiation oncologist on Thursday morning over at Hall Perrine Cancer Center. My speech kids filmed part of their movie "Solace" there. It's a really nice facility. I remember talking to Jeff Cash as he showed us around- joking that we hoped we'd never have to be there again. Ah, the irony. :)
After Dr. Nowell clears me for activity, I'll have appointments with the dietitian and the exercise guy. Pilates, here I come!
Joel DeSousa stopped by to chat today. We were so thrilled. Please feel free to drop in and say hi anytime! We're right on "C" Ave. We'll be home a lot this summer, so chances are you'll find at least one of us around.
I continue to get wonderful cards and notes of encouragement in the mail. Thank you so much. Each one is so precious and means a lot. I'm starting a file. If you know Debbie Lord, ask her about her 3rd grade sense of humor! ;)
Tomorrow the blog will hopefully be full of information about a treatment plan. Until then- GO TEAM ROBIN!!
Wednesday, June 4, 2014
Answers, sort of. ;)
I just got off the phone with my surgeon's nurse. "Finally, some news!", I thought when the phone rang and I recognized their number. (Kind of funny that I recognize my doctor's number!) However, even though I have some news, I don't have any answers. Here we go:
The surgery itself was fully successful. Dr. Nowell was pleased with the margins around the tumor. This is great news. However, they did find micrometastisis in one of the two lymph nodes she took. Side note- spell check just wanted me to change the spelling of micrometastisis to micrometerorites. We would have a much bigger problem if I had micrometerorites in my lymph nodes! :) Anyway- I still have no idea what all this means. I see my oncologist, Dr. Buntinas on Friday afternoon. When I looked up micrometastisis a few minutes ago, cancer.org says that chemo is usually recommended. But we'll see on Friday.
I am still reeling from how fast all of this has taken place, and I'm so thankful for that speed. If it was already starting to metastisize, then it is really good that it was removed so quickly.
Darrin and I were talking this morning about how right now it just seems like another surgery. On Friday, I think it will finally become cancer. I'm not really looking forward to that. But I am looking forward to what God is going to do with it.
Thanks for your continued prayers and support!! We really appreciate all of you more than you know!
The surgery itself was fully successful. Dr. Nowell was pleased with the margins around the tumor. This is great news. However, they did find micrometastisis in one of the two lymph nodes she took. Side note- spell check just wanted me to change the spelling of micrometastisis to micrometerorites. We would have a much bigger problem if I had micrometerorites in my lymph nodes! :) Anyway- I still have no idea what all this means. I see my oncologist, Dr. Buntinas on Friday afternoon. When I looked up micrometastisis a few minutes ago, cancer.org says that chemo is usually recommended. But we'll see on Friday.
I am still reeling from how fast all of this has taken place, and I'm so thankful for that speed. If it was already starting to metastisize, then it is really good that it was removed so quickly.
Darrin and I were talking this morning about how right now it just seems like another surgery. On Friday, I think it will finally become cancer. I'm not really looking forward to that. But I am looking forward to what God is going to do with it.
Thanks for your continued prayers and support!! We really appreciate all of you more than you know!
Tuesday, June 3, 2014
Girls' Night Out
First, just to get it out of the way, I'm still waiting to hear from pathology. Hopefully tomorrow will be the day. ;)
A little over a year ago, my dear friend Sarah Lillis and I had coffee together and she told me about this great idea she had to start a girls' night out ministry at Cedar Valley. The purpose would solely be to get women from the church together a couple times a month just to hang out. No Bible study, no prayer time- just hanging out getting to know each other. The main idea was that the deeper things will come, but not until you build relationships and get to know each other. I thought it was a great idea. Then I remembered that I am an introvert. :)
I went to the first couple of gatherings, but then was exhausted by play rehearsals and speech practices and three teenage boys. There were a few months I didn't make either of the nights out. But then, a couple months ago, I got excited about it again. I made it a point to be there, even if I was tired. I firmly believe that God prompted Sarah to start GNO to provide me with a support system for dealing with breast cancer. Now, I'm not so arrogant as to believe that was the ONLY purpose, but I'm pretty sure it was one of them. I know there are a whole host of women from Cedar Valley who are praying for me, ready to support me in any way. GNO helped build those relationships and provide support I would not have had as readily without it.
So, in just a couple of hours, the first GNO of the summer will be in my backyard. Darrin and I just spent the last while cleaning up the patio, hanging lights, putting the candles in place, and spraying for bugs. I'm exhausted, (the prednisone only let me sleep about 4 hours last night), I'm uncomfortable (it's still not helping the allergic reaction AT ALL!! ), but I'm so excited to see my girlfriends, eat snacks with them, and talk about whatever comes up. If you are in Cedar Rapids and read this before 7pm, come on over! Even if you don't go to Cedar Valley. I'd love to see any of you.
Isn't it amazing how our God anticipates our every need and provides for it long before we know we need it? He is already there, planning and preparing and taking care of us every step of the way. To that I say, Wow. Now I'd better get ready to make lemonade and popcorn!
A little over a year ago, my dear friend Sarah Lillis and I had coffee together and she told me about this great idea she had to start a girls' night out ministry at Cedar Valley. The purpose would solely be to get women from the church together a couple times a month just to hang out. No Bible study, no prayer time- just hanging out getting to know each other. The main idea was that the deeper things will come, but not until you build relationships and get to know each other. I thought it was a great idea. Then I remembered that I am an introvert. :)
I went to the first couple of gatherings, but then was exhausted by play rehearsals and speech practices and three teenage boys. There were a few months I didn't make either of the nights out. But then, a couple months ago, I got excited about it again. I made it a point to be there, even if I was tired. I firmly believe that God prompted Sarah to start GNO to provide me with a support system for dealing with breast cancer. Now, I'm not so arrogant as to believe that was the ONLY purpose, but I'm pretty sure it was one of them. I know there are a whole host of women from Cedar Valley who are praying for me, ready to support me in any way. GNO helped build those relationships and provide support I would not have had as readily without it.
So, in just a couple of hours, the first GNO of the summer will be in my backyard. Darrin and I just spent the last while cleaning up the patio, hanging lights, putting the candles in place, and spraying for bugs. I'm exhausted, (the prednisone only let me sleep about 4 hours last night), I'm uncomfortable (it's still not helping the allergic reaction AT ALL!! ), but I'm so excited to see my girlfriends, eat snacks with them, and talk about whatever comes up. If you are in Cedar Rapids and read this before 7pm, come on over! Even if you don't go to Cedar Valley. I'd love to see any of you.
Isn't it amazing how our God anticipates our every need and provides for it long before we know we need it? He is already there, planning and preparing and taking care of us every step of the way. To that I say, Wow. Now I'd better get ready to make lemonade and popcorn!
Monday, June 2, 2014
Dumplings and doctors and deep thoughts (not in that order)
I called my dr. back today and got a steroid burst pack to try to get this allergic reaction under control. After one dose, I'm ready to run around the block and I am shaking like a leaf. It's actually a bit of a challenge to type. :) I only have to take the pills for six days, so hopefully I'll avoid the worst of the side effects of steroids.
I also heard from my gastroenterologist today. I've been seeing Dr. Silber since I was 18. He's an incredible guy and a great doctor. He was super concerned about my diagnosis, so he's changing up my meds a little and asked me to have some tests run. I'll go over to the lab tomorrow to do that. I'm guessing he wants to stay ahead of my colitis as much as possible. It is exacerbated by stress, and I guess you could call this a stressful life event. :) I am so very thankful to live here in Cedar Rapids where we have exemplary medical care. It is care that is combined with midwestern kindness. Several of my docs have been nationally recognized for their skill, and they treat their patients with great care and concern- spending the time we need, rather than just sticking to a fast schedule. That is a huge blessing.
Darrin and I decided to go to the library today and check out our favorite dumpling cookbook. Then we came home and made over 100 dumplings! We cooked and ate some and then put the rest in the freezer to cook later. It was a lot of fun, though it was tiring. But with this predisone energy, I could probably make 100 more!! It is wonderful to have a husband who loves to cook as much as I do. Someday we'll be little old round people who just make and eat dumplings all day. Maybe we'll open a food truck. "Look- here come the dumpling people!!" I can see it now!
Well, pathology results should be in tomorrow or Wednesday. I see my oncologist, Dr. Buntinas, on Friday to create our battle plan. I'm looking forward to figuring out what we're going to do. Everything is on hold right now, and it will be nice to have a plan and be able to move forward. Go, Team Robin!
I also heard from my gastroenterologist today. I've been seeing Dr. Silber since I was 18. He's an incredible guy and a great doctor. He was super concerned about my diagnosis, so he's changing up my meds a little and asked me to have some tests run. I'll go over to the lab tomorrow to do that. I'm guessing he wants to stay ahead of my colitis as much as possible. It is exacerbated by stress, and I guess you could call this a stressful life event. :) I am so very thankful to live here in Cedar Rapids where we have exemplary medical care. It is care that is combined with midwestern kindness. Several of my docs have been nationally recognized for their skill, and they treat their patients with great care and concern- spending the time we need, rather than just sticking to a fast schedule. That is a huge blessing.
Darrin and I decided to go to the library today and check out our favorite dumpling cookbook. Then we came home and made over 100 dumplings! We cooked and ate some and then put the rest in the freezer to cook later. It was a lot of fun, though it was tiring. But with this predisone energy, I could probably make 100 more!! It is wonderful to have a husband who loves to cook as much as I do. Someday we'll be little old round people who just make and eat dumplings all day. Maybe we'll open a food truck. "Look- here come the dumpling people!!" I can see it now!
Well, pathology results should be in tomorrow or Wednesday. I see my oncologist, Dr. Buntinas, on Friday to create our battle plan. I'm looking forward to figuring out what we're going to do. Everything is on hold right now, and it will be nice to have a plan and be able to move forward. Go, Team Robin!
Sunday, June 1, 2014
A minor setback
Well, it was nice while it lasted! I had to call my surgeon last night to get some advice. Apparently I am allergic to the prep they used to sterilize the skin before surgery. I've been popping Benedryl like crazy, but it isn't helping. It is making me sleepy, so we slept until 10:30 this morning. In the morning I'll call again and get a prescription for some steroids to knock it out. This happened with my foot surgery in December, too. But then I thought it was a reaction to the adhesive in the bandages. It might be a combination of the two. At least now I know to tell everyone that I'm allergic to chlorohexadrine. :)
On another note, we had a great time redecorating the boys' Lego Lounge today. We bought amazingly cheap poster frames at Michael's and hung a couple posters, put up the counter top we bought at the ReStore and cleaned it up quite a bit. It should be a great surprise for them!! It was slightly frustrating that it took me a really long time, though. Usually this is a project we could knock out in an hour or so. This time there had to be a 2 hour nap between starting and finishing. That's ok, though- Sunday afternoons are great for naps!
On another note, we had a great time redecorating the boys' Lego Lounge today. We bought amazingly cheap poster frames at Michael's and hung a couple posters, put up the counter top we bought at the ReStore and cleaned it up quite a bit. It should be a great surprise for them!! It was slightly frustrating that it took me a really long time, though. Usually this is a project we could knock out in an hour or so. This time there had to be a 2 hour nap between starting and finishing. That's ok, though- Sunday afternoons are great for naps!
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