I get asked alot now how I'm doing... And my immediate answer is always "Sooo good!" And it's true, it is really amazing being done w/ most of my treatments. A couple of days ago at Isaac's cub scout camp, I remarked to one of the other den leaders that the clouds looked like cotton balls in the sky. She goes, "Oh, there goes your "appreciation for the small things in life" again!" I had to laugh, because it's totally true that I see in color now rather than black and white. So to speak.
However, what most people don't know is that I broke down in tears alone in my car when I heard on the radio that Sheryl Crow had a brain tumor. I had the same reaction when I heard about Robin Roberts' blood disorder. It's not necessarily that I have this big looming fear of death hanging over my head, but I have a big looming fear of ever having to endure chemo again.
I love it when friends and family are able to speak frankly with me about my hopes and fears. Pretending that recurrence is not a possibility does not help me move on, or forget about cancer. All it will do is make me not want to share my true feelings, and that ain't healthy!
So right now, I'm trying to adjust to what I'll call (for lack of a newer fresher term) my new normal. Now that I look and feel healthy, I try to go about my normal activities until I completely crash and realize I'm not ready yet to do it all. One of the hardest things for me right now is that in my mind I have a huge stack of IOU's that need to be repaid. My family was served tirelessly for the past 9+ months, and now that I'm well(er), I want to whip them out and start paying everyone back. It's soooo hard for me not to do this. However, the truth is, I still require a couple hours of sleeping each afternoon. And I can barely keep up with my own family's needs.
As I read over this, it kind of sounds to me like I'm asking for help again. But no, it thrills me each day to feel self sufficient(ish). Seriously. My heart flutters a little whenever I think about cooking a yummy meal, or vacuming and tidying a room all by myself. It feels amazing to be able to do beads with the girls, or help w/ Isaac's cub camp. I am so happy I had help when I needed it, but I LOVE being able to do it myself.
Anyways, I'm signing off for now... thanks for all the love and support, I am sooo blessed.
Showing posts with label fatigue. Show all posts
Showing posts with label fatigue. Show all posts
Thursday, June 28, 2012
Thursday, February 9, 2012
Mastectomy Eve!
Well, tomorrow's a big day for me: the day I lose my womanhood. ;) I'm actually feeling pretty OK with everything, considering what's coming up. I'm mostly concerned that it's going to be hard not holding and hugging my kids for a few weeks. As I tucked the girls in their beds tonight, I was thinking of how sad it was that this would be the last time in a while that I'll be able to pick up Ellie and hold her tight. She's running a fever tonight, so I've had to distance myself from her so I don't get sick before the surgery, and it's been hard.
It has been a while since my last blog post. Truthfully, I've been feeling so good and life has been so very normal, that I haven't had any updates. I've been cleaning my own house, cooking food and for the most part taking care of my own kids! It has felt great to have my life back and get back to the way it was before chemo. For the most part. I still take almost daily afternoon naps. The fatigue is still there, mostly I think because I don't sleep well at night anymore - hot flashes.
About a week and a half ago, we met with my surgeon, Dr. Soriano, to discuss the upcoming surgery. I asked him a question I don't recommend ever asking a doctor if you have cancer: What are the chances of recurrence after my treatment is finished? What he told us completely rocked our world. He told us that I had a 60% chance of living for 5 more years. Uh, what? So are you saying I have a 40% chance of dying in the next 5 years? (I'm such a pessimist, I know.) He said that the nature of my HER2 positive cancer is very aggressive and the tumor was really large. According to the past studies, 60% of women with that kind of tumor that same size lived for the next 5 years. After crying a little- or a lot, I'm not sure, we asked him all sorts of questions about what we could possibly do to increase my survival rate. He told me to eat organically, and watch what kinds of health and beauty products I use. He gave me a website to consult for this and recommended 3 books to read.
Hmm... so maybe this cancer thing is a little more serious than we thought? We scheduled an MRI to determine whether the tumor affected my chest muscle or not. This would determine whether or not Dr. Soriano would have to remove any of the muscle during the mastectomy. The absolutely WONDERFUL news is that the MRI showed no trace of the cancer! The chemo did it's job as well as any of us could have hoped it would.
In light of our new found realization of the serious nature of my condition, we decided to go to the Seattle Cancer Care Alliance for a second opinion. Luckily, we were able to get in before the date of my scheduled surgery, and we had all of my medical records sent over to them. The appointment was last Tuesday, and I'm really glad we went there. All 3 doctors (surgeon, medical oncologist, and radiation oncologist) met with me briefly first thing, then we had an hour break as the doctors talked about my case in a conference. My good friend Emily works nearby, so she knew all the best hospital cafeterias in the area and took us to a really nice one. ;) Anyways, when we got back to the SCCA, we spent a very long afternoon meeting with each doctor individually.
We learned that my medical oncologist in Everett had me on the harshest chemo drugs she could have chosen (Yay, Dr. Wang! She picked the right ones, they worked!). So, all my whining was for good cause. We also learned that the radiation oncologist at SCCA specializes in breast radiation, and uses a neat new technique that will minimize exposure to my heart and lungs of the radiation. We also learned of another reconstruction option that sounds like it will be better for me. The surgeon said that a plastic surgeon could insert expanders at the time of the mastectomy, then stretch my skin over the course of the next several weeks before radiation. After radiation, those expanders would be swapped out for permanent implants. This eliminates the need to pull skin and muscle or fat from other areas of my body. And it eliminates the need for another major surgery in the fall. And most importantly, we learned that these doctors think I have a much better chance of surviving for 5 more years. :) I'm feeling very positive and hopeful for the future.
After a stressful couple of days trying to coordinate everything, I'm all set for my bilateral skin-sparing mastectomy, auxillary node removal and expander placement tomorrow morning bright and early! See you on the flippity flip!
It has been a while since my last blog post. Truthfully, I've been feeling so good and life has been so very normal, that I haven't had any updates. I've been cleaning my own house, cooking food and for the most part taking care of my own kids! It has felt great to have my life back and get back to the way it was before chemo. For the most part. I still take almost daily afternoon naps. The fatigue is still there, mostly I think because I don't sleep well at night anymore - hot flashes.
About a week and a half ago, we met with my surgeon, Dr. Soriano, to discuss the upcoming surgery. I asked him a question I don't recommend ever asking a doctor if you have cancer: What are the chances of recurrence after my treatment is finished? What he told us completely rocked our world. He told us that I had a 60% chance of living for 5 more years. Uh, what? So are you saying I have a 40% chance of dying in the next 5 years? (I'm such a pessimist, I know.) He said that the nature of my HER2 positive cancer is very aggressive and the tumor was really large. According to the past studies, 60% of women with that kind of tumor that same size lived for the next 5 years. After crying a little- or a lot, I'm not sure, we asked him all sorts of questions about what we could possibly do to increase my survival rate. He told me to eat organically, and watch what kinds of health and beauty products I use. He gave me a website to consult for this and recommended 3 books to read.
Hmm... so maybe this cancer thing is a little more serious than we thought? We scheduled an MRI to determine whether the tumor affected my chest muscle or not. This would determine whether or not Dr. Soriano would have to remove any of the muscle during the mastectomy. The absolutely WONDERFUL news is that the MRI showed no trace of the cancer! The chemo did it's job as well as any of us could have hoped it would.
In light of our new found realization of the serious nature of my condition, we decided to go to the Seattle Cancer Care Alliance for a second opinion. Luckily, we were able to get in before the date of my scheduled surgery, and we had all of my medical records sent over to them. The appointment was last Tuesday, and I'm really glad we went there. All 3 doctors (surgeon, medical oncologist, and radiation oncologist) met with me briefly first thing, then we had an hour break as the doctors talked about my case in a conference. My good friend Emily works nearby, so she knew all the best hospital cafeterias in the area and took us to a really nice one. ;) Anyways, when we got back to the SCCA, we spent a very long afternoon meeting with each doctor individually.
We learned that my medical oncologist in Everett had me on the harshest chemo drugs she could have chosen (Yay, Dr. Wang! She picked the right ones, they worked!). So, all my whining was for good cause. We also learned that the radiation oncologist at SCCA specializes in breast radiation, and uses a neat new technique that will minimize exposure to my heart and lungs of the radiation. We also learned of another reconstruction option that sounds like it will be better for me. The surgeon said that a plastic surgeon could insert expanders at the time of the mastectomy, then stretch my skin over the course of the next several weeks before radiation. After radiation, those expanders would be swapped out for permanent implants. This eliminates the need to pull skin and muscle or fat from other areas of my body. And it eliminates the need for another major surgery in the fall. And most importantly, we learned that these doctors think I have a much better chance of surviving for 5 more years. :) I'm feeling very positive and hopeful for the future.
After a stressful couple of days trying to coordinate everything, I'm all set for my bilateral skin-sparing mastectomy, auxillary node removal and expander placement tomorrow morning bright and early! See you on the flippity flip!
Saturday, October 29, 2011
Ups and downs
You know, I've had good days and I've had bad days. Isn't that what life is all about? Experiencing both joy and pain, sickness and health, ups and downs? This is how we learn, grow and progress. I know this. I understand that we need to go through the miserable times to help us better appreciate the great times, and I'm glad for that perspective, but sometimes I just want to feel sorry for myself! ;)
That's where I was last week: feeling very, very VERY sorry for myself. Let me tell you something about going through menopause. It ain't fun. It messes with your mind, emotions, sleep patterns, internal thermometer... I was either in tears or on the verge the entire week. Not to mention the other stuff chemo does to me: constipation, changed taste buds, my mouth feeling "weird", headaches, and the ever present fatigue. BUT my symptoms and moods are kind of predictable, and I remember to tell myself that it's all temporary and it's the chemo's fault. Not Trevor's. Not the kids'.
I did a lot of reading that week. Reading of other people's cancer experiences. I read a really good article by a woman who was about my age and went through cancer treatments in 2010. She's about my age and kept a detailed journal throughout her treatments and compiled some of her thoughts in to an article. It was so VALIDATING for me to read her words. I identified with so many of her feelings. For example, she cried when the nurse inserted the needle for the IV. I totally do that! Every single time I get poked with a needle, whether it's in my port, arm, or butt, a single tear trickles down my face. I hate it. Needles never bothered me before, but I hate them now. Hate. Another thing she put in to words for me is this:
"I thought having fatigue, as the doctor referred to it, meant I'd be out like a light. Nope. In fact, actual sleep is elusive. Fatigue means curling up under a blanket without moving. For hours. My mind is usually racing, but my body is perfectly still."
Then she goes on to say that her parents convinced her to move back in with them (she was engaged, no kids) for the duration of cancer treatments. She does this and is able to be taken care of by them, rarely leaving their home except when she goes to the city for her chemo treatments. I have to admit that made me REALLY jealous. Not that I don't love my kids. I mean come on, have you even seen our family photos? They are adorable. I CLEARLY love my kids. But to be able to "curl up under a blanket without moving for hours" and give in to the fatigue sometimes sounds nice.
http://lifestyle.msn.com/your-life/bigger-picture/article.aspx?cp-documentid=30982257&OCID=LIKE
OK, apparently I don't know how to insert a link into a blog, but if you want to read it, you may copy and paste! I really could go on forever about the things she writes about that strike a major nerve in me. I wanted to find her email address so I could send her an email and thank her for sharing her journal with the world. It was truly therapeutic to read and was a factor in my decision to find a good support group of young breast cancer survivors to join.
So anyways, it's not all so terrible all the time. Really, it's not. It's that first full week after a chemo treatment that's a doozy. Then the next 2 weeks are better. Seriously better. Like, I'm almost a normal person. In fact I just got home from a Zumba party!
It just happened to be a Party in Pink-a fundraiser for the Susan G. Komen Foundation. It was a blast! It was my first time doing Zumba in a club type setting, and I loved it. I just wish I could have kept up a little better. I have very little energy or stamina right now, but I did the best I could. Trevor even came and shook it with the rest of us! Well, he's still not sure if Zumba is his "thing", but I think he did awesome. My friend Jamie was one of the instructors there and she had asked me ahead of time if I could say a few words to the group to help them understand the importance of breast cancer research. When I got up on the stage, they all clapped and cheered for me before I even said a word. (It was the bald head that tipped them off that I was a cancer survivor-either that, or they could see my port under my baggy pink t-shirt. No, it was the bald head for sure!) I told them my story, specifically how I came to be diagnosed, and how treatments are going. They laughed, they cried, they cheered lots for me (where were they all last week when I was crying in my bathtub? I coulda used some cheers then!) and I made sure I put in a nice plug for the NEXT Zumba fundraiser that was being held next weekend for... ahem... me.
Yes, my dear fundraising friends are at it again and I couldn't love them more for it! Next Saturday, November 5th, from 11:00am to 12:30pm in Stanwood. I am so very thankful for those that spend so much time and energy raising money for us during this time. I cannot express how much it means to us.
Well I need to go catch some ZZZZ's now. Tomorrow morning (9am) is the children's primary program at church and we can't be late!
That's where I was last week: feeling very, very VERY sorry for myself. Let me tell you something about going through menopause. It ain't fun. It messes with your mind, emotions, sleep patterns, internal thermometer... I was either in tears or on the verge the entire week. Not to mention the other stuff chemo does to me: constipation, changed taste buds, my mouth feeling "weird", headaches, and the ever present fatigue. BUT my symptoms and moods are kind of predictable, and I remember to tell myself that it's all temporary and it's the chemo's fault. Not Trevor's. Not the kids'.
I did a lot of reading that week. Reading of other people's cancer experiences. I read a really good article by a woman who was about my age and went through cancer treatments in 2010. She's about my age and kept a detailed journal throughout her treatments and compiled some of her thoughts in to an article. It was so VALIDATING for me to read her words. I identified with so many of her feelings. For example, she cried when the nurse inserted the needle for the IV. I totally do that! Every single time I get poked with a needle, whether it's in my port, arm, or butt, a single tear trickles down my face. I hate it. Needles never bothered me before, but I hate them now. Hate. Another thing she put in to words for me is this:
"I thought having fatigue, as the doctor referred to it, meant I'd be out like a light. Nope. In fact, actual sleep is elusive. Fatigue means curling up under a blanket without moving. For hours. My mind is usually racing, but my body is perfectly still."
Then she goes on to say that her parents convinced her to move back in with them (she was engaged, no kids) for the duration of cancer treatments. She does this and is able to be taken care of by them, rarely leaving their home except when she goes to the city for her chemo treatments. I have to admit that made me REALLY jealous. Not that I don't love my kids. I mean come on, have you even seen our family photos? They are adorable. I CLEARLY love my kids. But to be able to "curl up under a blanket without moving for hours" and give in to the fatigue sometimes sounds nice.
http://lifestyle.msn.com/your-life/bigger-picture/article.aspx?cp-documentid=30982257&OCID=LIKE
OK, apparently I don't know how to insert a link into a blog, but if you want to read it, you may copy and paste! I really could go on forever about the things she writes about that strike a major nerve in me. I wanted to find her email address so I could send her an email and thank her for sharing her journal with the world. It was truly therapeutic to read and was a factor in my decision to find a good support group of young breast cancer survivors to join.
So anyways, it's not all so terrible all the time. Really, it's not. It's that first full week after a chemo treatment that's a doozy. Then the next 2 weeks are better. Seriously better. Like, I'm almost a normal person. In fact I just got home from a Zumba party!
It just happened to be a Party in Pink-a fundraiser for the Susan G. Komen Foundation. It was a blast! It was my first time doing Zumba in a club type setting, and I loved it. I just wish I could have kept up a little better. I have very little energy or stamina right now, but I did the best I could. Trevor even came and shook it with the rest of us! Well, he's still not sure if Zumba is his "thing", but I think he did awesome. My friend Jamie was one of the instructors there and she had asked me ahead of time if I could say a few words to the group to help them understand the importance of breast cancer research. When I got up on the stage, they all clapped and cheered for me before I even said a word. (It was the bald head that tipped them off that I was a cancer survivor-either that, or they could see my port under my baggy pink t-shirt. No, it was the bald head for sure!) I told them my story, specifically how I came to be diagnosed, and how treatments are going. They laughed, they cried, they cheered lots for me (where were they all last week when I was crying in my bathtub? I coulda used some cheers then!) and I made sure I put in a nice plug for the NEXT Zumba fundraiser that was being held next weekend for... ahem... me.
Yes, my dear fundraising friends are at it again and I couldn't love them more for it! Next Saturday, November 5th, from 11:00am to 12:30pm in Stanwood. I am so very thankful for those that spend so much time and energy raising money for us during this time. I cannot express how much it means to us.
Well I need to go catch some ZZZZ's now. Tomorrow morning (9am) is the children's primary program at church and we can't be late!
Friday, October 14, 2011
Chemo - cycle 2, here we go!
It's been a while since I updated this blog, I hope you didn't miss me too much! Here's what's been going on: Last Sunday and Monday, my hair started really falling out like crazy. I know it probably doesn't seem like a big deal to anyone but me, but before it was my choice that it was shaved, and it was still a little dark and thick and healthy, now it is all patchy and thin and sickly looking. And for some reason now my scalp is more sensitive, kind of like needles pricking if I press down on my hair. I know, I know, it means the chemo is doing it's job to kill those fast growing cells - but I still hate the way it looks right now. I have given myself some new beauty rules: earings and lipstick everyday! Even when I'm not going anywhere. It helps when I pass by a mirror to not feel so ugly.
Monday we met with the plastic surgeon to discuss reconstruction options. Not sure what to say about that visit. Because I'm going to go through radiation after the mastectomy, the skin on my chest will be pretty damaged, so they will actually have to pull skin from another area of my body and attach it to my chest to stretch for the reconstruction. The doctor gave his 2 preferences: My abs or my back. So I'm going to set up an online poll for you to cast your vote. Haha, just kidding. I can't even believe I'm adding this paragraph to my blog, but I'll just blame it on chemo brain. (Yes, it's true. They say chemo makes you a little fuzzy in the brain sometimes.)
Speaking of chemo, Wednesday was my second time to recieve my chemo treatment. If you remember, I go in every 3 weeks for chemo, but every single Wednesday in between I go in for just mone drug, which is Herceptin - my super amazing drug that knows how to specifically target these little receptors on my cancerous cells. I think it's part of the reason my cancer is being so affected my treatments. That and all the prayers and fasts going up on my behalf. Anyways, so my sister Susan took to me this time and we had lots of fun playing card games and eating yummy hostpital cafeteria food. I wouldn't recommend the zucchini/squash side dish though. It sounded great, but it was terrible. Hmmm.
Anyways, the infusion room is a big long room lined by windows that is sectioned off (really just by the arrangement of the reclining chairs we sit in). Each nurse is assigned to a section of 4 patients kind of the way restaurants are divided into sections for the servers to work in. There was a lady sitting across from my in my section, who I think looked a little to smug, but I found out why when all the nurses surrounded her and announced to the whole room that she was finishing up her very last chemo treatment that day! We all cheered and clapped for her, then I had a most unexpected reaction: tears of jealousy. I was soooo jeaous! (and I was kidding about the smug looks she was giving by the way.) I just wanted to be in her shoes so badly, but there I was just beginning my chemo treatment. Poor me. Wah wah.
So now it's Friday, I've been feeling pretty good, just very TIRED this time around. They say the symptoms are cyclical, so each cycle of chemo will be much like the last - except for the fatigue, which gets worse and worse each time. I'm supposed to remain as active as I can, otherwise teh fatigue really gets worse. So I've taken the kids swimming at the YMCA, I took the girls for a walk yesterday - it was such a pretty day we had to get outside and I'm sure we'll find something active to do today. But I'm also able to keep getting lots of rest. It's been nice because we've had dinners brought in the past couple nights from people in the ward so I don't have to worry about that kind of thing right now. And I'm taking naps in the afternoons when I put down the girls. I love that they both take naps still and I am able to have that time to myself. LIFE IS GOOD. At least that's what the plaque in my living room says. :)
Monday we met with the plastic surgeon to discuss reconstruction options. Not sure what to say about that visit. Because I'm going to go through radiation after the mastectomy, the skin on my chest will be pretty damaged, so they will actually have to pull skin from another area of my body and attach it to my chest to stretch for the reconstruction. The doctor gave his 2 preferences: My abs or my back. So I'm going to set up an online poll for you to cast your vote. Haha, just kidding. I can't even believe I'm adding this paragraph to my blog, but I'll just blame it on chemo brain. (Yes, it's true. They say chemo makes you a little fuzzy in the brain sometimes.)
Speaking of chemo, Wednesday was my second time to recieve my chemo treatment. If you remember, I go in every 3 weeks for chemo, but every single Wednesday in between I go in for just mone drug, which is Herceptin - my super amazing drug that knows how to specifically target these little receptors on my cancerous cells. I think it's part of the reason my cancer is being so affected my treatments. That and all the prayers and fasts going up on my behalf. Anyways, so my sister Susan took to me this time and we had lots of fun playing card games and eating yummy hostpital cafeteria food. I wouldn't recommend the zucchini/squash side dish though. It sounded great, but it was terrible. Hmmm.
Anyways, the infusion room is a big long room lined by windows that is sectioned off (really just by the arrangement of the reclining chairs we sit in). Each nurse is assigned to a section of 4 patients kind of the way restaurants are divided into sections for the servers to work in. There was a lady sitting across from my in my section, who I think looked a little to smug, but I found out why when all the nurses surrounded her and announced to the whole room that she was finishing up her very last chemo treatment that day! We all cheered and clapped for her, then I had a most unexpected reaction: tears of jealousy. I was soooo jeaous! (and I was kidding about the smug looks she was giving by the way.) I just wanted to be in her shoes so badly, but there I was just beginning my chemo treatment. Poor me. Wah wah.
So now it's Friday, I've been feeling pretty good, just very TIRED this time around. They say the symptoms are cyclical, so each cycle of chemo will be much like the last - except for the fatigue, which gets worse and worse each time. I'm supposed to remain as active as I can, otherwise teh fatigue really gets worse. So I've taken the kids swimming at the YMCA, I took the girls for a walk yesterday - it was such a pretty day we had to get outside and I'm sure we'll find something active to do today. But I'm also able to keep getting lots of rest. It's been nice because we've had dinners brought in the past couple nights from people in the ward so I don't have to worry about that kind of thing right now. And I'm taking naps in the afternoons when I put down the girls. I love that they both take naps still and I am able to have that time to myself. LIFE IS GOOD. At least that's what the plaque in my living room says. :)
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