I officially have my first week of chemo under my belt, thank goodness! I literally could not stand the anticipation anymore.
I meant to update this along the week, but honestly the way I feel changes so often that I couldn't sit down and feel good about what I was about to write. I have said all along that I have to learn to live in today, and one day at a time, but this is more like one hour at a time!
The best way to describe how I have been feeling is not very PC, but, it is what it is. I feel like I'm 6 weeks pregnant and got SUPER drunk last night. Every night, last night. The 5 month hangover pregnancy. Without the joy of the baby or the fun of last night. I wake up every morning and feel terrible, but I get out of bed and I make a green juice (3 pieces of kale, 2 stalks of celery, an apple, 3 pieces of romaine, a carrot and half a cucumber) and I swear it makes me feel better. Then the rest of the day is a toss up. I can't let myself get hungry, which is hard because I'm feeling sick, but if I get hungry I get more sick. I'm tired and many days I have fallen asleep on the couch after the boys go to bed (at 7:30). I'm drinking close to 80 oz of healthy fluid a day - 64 of those are water. Blech.
One day this week a co-worker noticed me sleeping with my head on my desk (it was necessary). The next day she brought in a cot and put it in an empty office with a beautiful quilt and little pillow. Today, I rested over my lunch on the cot and have felt great all day. I love people. We've also been "going to the freezer" lately and eating with extreme gratitude for the food that has been made for us. I basically cook(ed) 7 days a week, and that's just the very last thing I want to do when I get home from work now.
Cameron and Elliott are doing well. We've talked about it as much as they've wanted to, and I've answered all of their questions as honestly as I can. They're 3 and 5 so they don't get overly deep yet. Elliott's teacher told me that he told her that his "mommy will probably be bald at spring", and I'm very happy that he's feeling comfortable enough to talk to his teachers about it. They've been amazingly sweet.
I'm proud of my body, what it's endured and how it has endured it. I would be a lot more proud of my body if it hadn't gotten cancer in the first place, but that's behind me now.
Thursday, January 24, 2013
Thursday, January 17, 2013
Operation Search and Destroy
Round one of chemo is DONE! I'm pretty sure it did 1/12th of its job, so I figure I'll go back 11 more times to make sure the job is completely taken care of.
It was overall a very pleasant experience. I'm feeling fortunate to be receiving care where I am. Everyone has been so wonderful. Plus, Hope and Erin were both with me, which as always - was amazing. There's a reason the three of us have been best friends for 20 years, and you could feel it in that room today. I love those girls intensely.
Part of what I was most nervous about was them accessing the port since it's still sensitive to the touch, but it was a piece of cake.
After she accessed the port she drew my blood (right from my port) and then gave me three rounds of pre-chemo drugs. Two anti-nausea and one steroid. Then she got herself fully gowned to start the good stuff. First she injected the "red devil". That one was pushed into my port instead of an IV, and it was several syringes of bright red....devil. Then the second one was in IV drip and took about an hour. In the middle, someone from the pharmacy came and dropped off 5 take home meds - including an ambien. Apparently the steroids steal the sleep from some people, and I'm just not okay with that. I can tolerate a lot, but not sleeping is not one of them.
After that - she sent me home! Just like that. No waiting around to be sure.....of anything. Just sent me home. So, I went home very very tired and sat next to Erin while she read stories to the boys and Scott cooked. :) Then Erin left, I took over the story reading....and I started to get sick from the smell of the cooking. I wanted to cry. Everyone says this is the best day, the last thing I want was to already be nauseous. But, I think I had just gotten too hungry without realizing, so I ate some dinner and feel better again.
I would call today's mission a success.
Monday, January 7, 2013
The weapon
The port is in. My friend Hope decided we'll call it "the weapon" because of the damage it's going to do to this stupid cancer, that I don't have any more because they got it all. The procedure was relatively fast - and I was sedated but not under general anesthesia which makes the recovery a thousand times better.
For those that don't know (because I wouldn't know if I wasn't going through it) the port is a...thing that they place in my chest that has a little tube that connects to my artery. So when I have to have chemo they'll just puncture the piece of skin over the port each time, and then inject the chemo there - and since it's connected to my artery it will provide the best flow for the chemo. And they spare my veins. So I have a tiny cut on my neck, and another about an inch on my chest.
Here is a picture of my crazy support system before the procedure....
Here is a picture of my crazy support system before the procedure....
Sunday, January 6, 2013
Blue
This last week has been hard. I think I grieved the information that my cancer is triple negative almost as bad as I grieved when I found out I had cancer. I had just heard so many positive things about being NOT triple negative that it was hard to come to terms with having it. Again.
Then I caught the stomach bug that has been going around everywhere, and have been sick for the last three days. Honestly - having a stomach bug two weeks before starting chemotherapy is quite like a kick in the crotch. I'm sorry, it just is. I should be up and eating and enjoying life, and instead I've been down for the count. Although, if I were to be completely honest, I may say that it was almost nice to have an excuse to be down and out because I wanted to be anyway.
I've been trying my best to get to yoga at least twice a week. I started to say "and that's helping", but I really don't know if it's helping or not. Who knows how I would feel if I wasn't? I'm also going to get a treadmill for my basement, and try my very hardest to get downstairs and exercise for 30 minutes in the morning through the 5 months of chemo. Everything I'm reading and/or have been told is that if I can maintain some sort of physical exercise throughout chemo that my body will be stronger and will be able to manage it better. I'll go in with good intentions and hope they come to fruition.
My doctor told me to be sure that I do something every day that I love. That is very, very hard to do in the winter. I hate the winter's guts. What makes me happy is camping, playing at the park, biking with the boys, canoeing, picnicing.....nothing that I can do in the winter. I typically experience some form of Seasonal Affective Disorder anyway. Add chemo and cancer, and it's going to be a LONG winter. But that also means it will be an even better summer than usual. The other thing I love to do is eat. My stupid stomach bug took away that joy, and then my "research" on cancer really squashed it (limit sugar! limit fat! no alcohol! limit caffiene!). I eat well already and need to come to terms that this is something that I may not be able to control. That's been hard.
Scott and I took the boys ice skating today with our best friends who have boys the same age-ish. Scott and I don't ice skate, but Cameron and Elliott honestly took off. I have never seen Cameron take to something so instantly unless it was a book. They had those pusher things and both of them just loved it - pure joy. I think the combination of watching them along with my stomach bug finally going away has helped me break out of the blues a little bit. Maybe it was also just a matter of time.
I get my port put in tomorrow. I'm more nervous about that than I was the lumpectomy. I think because a surgeon was taking something out of me that shouldn't be there with the lumpectomy, and I was going to be under general anesthesia. For this procedure a radiologist is putting a tube into an artery that will stay there for many months, so that they can have easy access to poison me. I mean my cancer. Either way, I'll be glad when it's over. Wednesday I have an echo and Friday I have Sesame Street Live. :)
Then I caught the stomach bug that has been going around everywhere, and have been sick for the last three days. Honestly - having a stomach bug two weeks before starting chemotherapy is quite like a kick in the crotch. I'm sorry, it just is. I should be up and eating and enjoying life, and instead I've been down for the count. Although, if I were to be completely honest, I may say that it was almost nice to have an excuse to be down and out because I wanted to be anyway.
I've been trying my best to get to yoga at least twice a week. I started to say "and that's helping", but I really don't know if it's helping or not. Who knows how I would feel if I wasn't? I'm also going to get a treadmill for my basement, and try my very hardest to get downstairs and exercise for 30 minutes in the morning through the 5 months of chemo. Everything I'm reading and/or have been told is that if I can maintain some sort of physical exercise throughout chemo that my body will be stronger and will be able to manage it better. I'll go in with good intentions and hope they come to fruition.
My doctor told me to be sure that I do something every day that I love. That is very, very hard to do in the winter. I hate the winter's guts. What makes me happy is camping, playing at the park, biking with the boys, canoeing, picnicing.....nothing that I can do in the winter. I typically experience some form of Seasonal Affective Disorder anyway. Add chemo and cancer, and it's going to be a LONG winter. But that also means it will be an even better summer than usual. The other thing I love to do is eat. My stupid stomach bug took away that joy, and then my "research" on cancer really squashed it (limit sugar! limit fat! no alcohol! limit caffiene!). I eat well already and need to come to terms that this is something that I may not be able to control. That's been hard.
Scott and I took the boys ice skating today with our best friends who have boys the same age-ish. Scott and I don't ice skate, but Cameron and Elliott honestly took off. I have never seen Cameron take to something so instantly unless it was a book. They had those pusher things and both of them just loved it - pure joy. I think the combination of watching them along with my stomach bug finally going away has helped me break out of the blues a little bit. Maybe it was also just a matter of time.
I get my port put in tomorrow. I'm more nervous about that than I was the lumpectomy. I think because a surgeon was taking something out of me that shouldn't be there with the lumpectomy, and I was going to be under general anesthesia. For this procedure a radiologist is putting a tube into an artery that will stay there for many months, so that they can have easy access to poison me. I mean my cancer. Either way, I'll be glad when it's over. Wednesday I have an echo and Friday I have Sesame Street Live. :)
Tuesday, January 1, 2013
The plan
Just a quick addendum....I met with the oncologist yesterday.
I will have a port placed in my chest for the chemo sometime in the next week and a half. I will start chemo on 1/17. I'll have 12 rounds of chemo in the course of 5 months. First I'll go in every other week for 8 weeks and then I'll go in every week for 4 weeks. When that's done I'll do 6-7 weeks of radiation, 5 days a week.
I feel shaky and scared. She gave me a "number" and I think the intention was to make me feel better about chemo. It really just ended up scaring me. The worse part about the whole appointment was her telling me that if I die from this, it's going to be from a distant cancer - somewhere else in my body. When I asked how we screen for that distant cancer, then answer was we don't. We have to wait until I'm symptomatic. That's not what I wanted to hear. I wanted blood work, tests, other screenings, which she said just don't work. So she said I have to put my complete faith in this aggressive chemo and that it's killing any and every little micro cancer cell that may be in my body right now.
Here's to 2013.
I will have a port placed in my chest for the chemo sometime in the next week and a half. I will start chemo on 1/17. I'll have 12 rounds of chemo in the course of 5 months. First I'll go in every other week for 8 weeks and then I'll go in every week for 4 weeks. When that's done I'll do 6-7 weeks of radiation, 5 days a week.
I feel shaky and scared. She gave me a "number" and I think the intention was to make me feel better about chemo. It really just ended up scaring me. The worse part about the whole appointment was her telling me that if I die from this, it's going to be from a distant cancer - somewhere else in my body. When I asked how we screen for that distant cancer, then answer was we don't. We have to wait until I'm symptomatic. That's not what I wanted to hear. I wanted blood work, tests, other screenings, which she said just don't work. So she said I have to put my complete faith in this aggressive chemo and that it's killing any and every little micro cancer cell that may be in my body right now.
Here's to 2013.
Saturday, December 29, 2012
The bad update
I received bad news last night.
When I was first diagnosed, the one thing that the nurse told me was very, very good - was that my cancer is estrogen receptive. That means they know what makes it grow (estrogen) and they can give me a pill for 5 years post treatment to block my estrogen, helping ensure this won't come back. My cancer was 80% estrogen receptive, and everyone really focused on that, and how good it was. It kind of made all the difference...
Unfortunately - "they made a mistake". When they sent my cancer out to the one lab in the country that does the oncotype tests (on estrogen receptive cancers) they sent it back and said it's not estrogen receptive. When my clinic got the news, they had pathology re-run it, and it came back as a big ole oops. Not estrogen receptive. Not anything receptive, actually.
What that means for me is.....I have to stay off the internet. It's big and scary to read about estrogen receptive breast cancer, but it's bigger and scarier to read about "triple negative" breast cancer, which is what mine is. They don't know what makes it grow, so they don't know how to stop it. So that big fun question of whether or not I will need chemo would've never been a question. I will start chemo by the end of January. It also means my follow up post treatment will be more intense. Instead of every six months rotating MRI with mammograms, I will be in every 2-3 months for 3 years. The other scary deal with this cancer is the chance of distant (in other places in my body) recurrence of cancer is greater, which is why I follow up every 2-3 months.
I also am at an increased risk of carrying the gene mutation that I wasn't at an increased risk for before.
So the plan is, I meet with the oncologist on Monday and we discuss how many rounds of chemo, what the chemo cocktail will be, and when it will start. I will have a port placed in my chest sometime over the next two weeks, and I will have the genetic test.
And I will stay off the internet, and try my hardest to live in today - which is not a skill I've yet to master.
When I was first diagnosed, the one thing that the nurse told me was very, very good - was that my cancer is estrogen receptive. That means they know what makes it grow (estrogen) and they can give me a pill for 5 years post treatment to block my estrogen, helping ensure this won't come back. My cancer was 80% estrogen receptive, and everyone really focused on that, and how good it was. It kind of made all the difference...
Unfortunately - "they made a mistake". When they sent my cancer out to the one lab in the country that does the oncotype tests (on estrogen receptive cancers) they sent it back and said it's not estrogen receptive. When my clinic got the news, they had pathology re-run it, and it came back as a big ole oops. Not estrogen receptive. Not anything receptive, actually.
What that means for me is.....I have to stay off the internet. It's big and scary to read about estrogen receptive breast cancer, but it's bigger and scarier to read about "triple negative" breast cancer, which is what mine is. They don't know what makes it grow, so they don't know how to stop it. So that big fun question of whether or not I will need chemo would've never been a question. I will start chemo by the end of January. It also means my follow up post treatment will be more intense. Instead of every six months rotating MRI with mammograms, I will be in every 2-3 months for 3 years. The other scary deal with this cancer is the chance of distant (in other places in my body) recurrence of cancer is greater, which is why I follow up every 2-3 months.
I also am at an increased risk of carrying the gene mutation that I wasn't at an increased risk for before.
So the plan is, I meet with the oncologist on Monday and we discuss how many rounds of chemo, what the chemo cocktail will be, and when it will start. I will have a port placed in my chest sometime over the next two weeks, and I will have the genetic test.
And I will stay off the internet, and try my hardest to live in today - which is not a skill I've yet to master.
Saturday, December 22, 2012
The non-update
The last I posted I had received great news (super duper great news). Several people asked me if that meant that I don't have to have chemo. Unfortunately, it doesn't mean that. I have one more test out there called the oncotype that will give us that answer. It comes back with a low, intermediate or high number- and based on that result my oncologist will have a better idea of my treatment path. She has never given me any reason to think I won't have chemo (she didn't actually want to run the test, she wanted me to do it either way) so I'm trying hard not to get my hopes up - but at the same time - I still have a test out there that could tell me I don't have to go through 6 months of chemo!?! Yah, my hopes might be up a little bit.
Although - I've talked to someone and read many things about people whose onctotype has come back low'ish and they decided not have chemo and still think about it, wondering if they made the right decision. That's not a fun way to feel either.
So, I meet with my oncologist the morning of 12/31 and my test should be back by then. I'm pretty confident I'll know what's next after I meet with her.
The pain had really decreased over the days, but I was down. My mind has been spinning and I couldn't stop it. I'm trying to figure out the magic number that I was going to say yes to the chemo and the magic number that I would say no. I'm trying to figure out if I want it to come back intermediate so that there's no question, and this decision is just made for me. If cancer comes back, it comes back mad - and I don't want that hanging over my head. Part of me wants to make sure I've done everything I can to make sure this never comes back. But then part of me wants it to be low so I don't have to have chemo. If that number is low and I don't have to have chemo, I have to somehow make myself the kind of person that moves forward with confidence in that decision and doesn't look back.
So yesterday I went to a beautiful slow flow/restorative yoga. Today I feel like I'm back to myself. Still neurotic, but not spinning. I'm going to have a range of motion issue with my right arm that I hope yoga will help me through. I already know it will help me through the mental part.
On another note - I love thank you cards. They're important to me and I'm typically really good at them. For example, Elliott - who is 3 - suggested we send a thank you card to the person that made the pizza we had for dinner the other night (don't judge, it's been a rough month). And it was a frozen pizza (seriously, rough month). So I'm sorry for everyone I haven't sent a thank you card to. I feel like you don't mind, but I'm thanking each and everyone of you right now. For the texts, food, flowers, phone calls, cards, thoughts, etc. Thank you.
Although - I've talked to someone and read many things about people whose onctotype has come back low'ish and they decided not have chemo and still think about it, wondering if they made the right decision. That's not a fun way to feel either.
So, I meet with my oncologist the morning of 12/31 and my test should be back by then. I'm pretty confident I'll know what's next after I meet with her.
The pain had really decreased over the days, but I was down. My mind has been spinning and I couldn't stop it. I'm trying to figure out the magic number that I was going to say yes to the chemo and the magic number that I would say no. I'm trying to figure out if I want it to come back intermediate so that there's no question, and this decision is just made for me. If cancer comes back, it comes back mad - and I don't want that hanging over my head. Part of me wants to make sure I've done everything I can to make sure this never comes back. But then part of me wants it to be low so I don't have to have chemo. If that number is low and I don't have to have chemo, I have to somehow make myself the kind of person that moves forward with confidence in that decision and doesn't look back.
So yesterday I went to a beautiful slow flow/restorative yoga. Today I feel like I'm back to myself. Still neurotic, but not spinning. I'm going to have a range of motion issue with my right arm that I hope yoga will help me through. I already know it will help me through the mental part.
On another note - I love thank you cards. They're important to me and I'm typically really good at them. For example, Elliott - who is 3 - suggested we send a thank you card to the person that made the pizza we had for dinner the other night (don't judge, it's been a rough month). And it was a frozen pizza (seriously, rough month). So I'm sorry for everyone I haven't sent a thank you card to. I feel like you don't mind, but I'm thanking each and everyone of you right now. For the texts, food, flowers, phone calls, cards, thoughts, etc. Thank you.
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