So again it's been awhile since my last post. It's hard to think of anything much to write about other than feeling like crap after chemo and then feeling less like crap as time goes on. I can't imagine anyone wants to read that over and over again, so I figure I'll wait until I have something of substance to write.
The past two weeks have been very up and down. I had my third chemo treatment on March 4, and the recovery this time was the easiest I've had! That may be due to the fact that my Vitamin D levels were tested and were VERY low, so I started taking both prescription and over the counter Vitamin D on the day of my chemo treatment. That weekend was the most "normal" weekend-after-chemo I've had so far, so even though I didn't feel great, I didn't feel like I was dying. My sister came to visit to help out that weekend, and Calla had a great time with her Aunt Virginia. My older nephew, who is a junior at Virginia Tech, stopped by on his way home for Spring Break on Saturday, so it was nice to see him as well.
The only time I really felt bad during this post-chemo was on Tuesday morning. I don't know if it's just because I went into work, which completely exhausted me, but I was in rough shape. I got through the morning and went home early, and thankfully felt fine the next day.
Yesterday I had another bad day, although it certainly wasn't as bad as a post-chemo day, but I was just exhausted all day for some reason. Calla had a birthday party in the morning at the local Children's Museum, so maybe that was what exhausted me. I kept waiting for the other parents to ask me about the chemo, because I'm sure they all know at this point. The kids have all asked me to see my bald head, and I'm guessing the kids have said to their parents "Calla's mommy doesn't have any hair!" No one said a word, though. I'm guessing if I was in their shoes I wouldn't have said anything, either. I'm not sure if what I would prefer, to be honest.
The really low this week, though, was that Aris lost his job. It was a temp job that was originally only supposed to last 8 weeks or so, and it lasted almost a year, so in some ways we should be grateful. However, the way the whole thing happened is really pretty shitty. Basically, at the end of the 2014 they told him that they wanted him to go full time and were basically creating a position for him. The entire time he's worked there, they have been been happy with his performance -- happy enough to keep him around for 9 months past when his original temp position was supposed to end. This week they basically told him that there were concerns with his performance that no one bothered to mention to him before and they were letting him go.
So here's the thing: the only that could have possibly changed in his job performance since the end of 2014 and now is that his wife got cancer. As a result, he's missed a bunch of days of work so that he could be with me, and he's been late a few times (which he normally never is) because he had to take Calla to pre-school or I was just feeling awful and made both of us late. So, basically, they are ASSHOLES. And here's the irony, in case you didn't know. Aris was working at Augusta Health, a fucking HOSPITAL.
I mean, seriously, who does that? Tell someone that they're creating a position for them, then their wife gets cancer so they let them go? And they work in the medical field. But since he was still a temp, there's absolutely nothing we can do. They can just tell the temp company that his job is done, and that's it.
So thank goodness for my sister and her fundraising. If it weren't for that, I don't know what we'd do. Luckily, we've been setting up payment plans for the larger medical bills that are coming in, and I have a small declining balance card as part of my crappy insurance plan that we're using for the smaller bills coming in. So far we have quite a stack of medical bills piled up, but since we've now met my deductible, hopefully they will slow down and eventually come to a stop.
So that's the news for now. Please send positive thoughts that Aris finds a good new job soon. I have my last Adriamycin and Cytoxan treatment this Wednesday. After that, I will have four Taxol treatments, which I'm hoping will be easier on my body.
Sunday, March 15, 2015
Sunday, March 1, 2015
Chemo sucks
Sorry it's been so long since I posted. I was going to write two weeks ago and then last week, but I just didn't. So let me just say straight out: CHEMO SUCKS. It's hard to even explain how I feel on a day to day basis, but I'll try my best. Basically it ranges between an exhausted version "normal" to feeling like someone is poisoning me and I'm dying. Also, my immune system is crap, so I have a cold constantly.
So instead of giving a blow-by-blow of my last three weeks, which quite frankly would be depressing and boring, I'll just list some highlights:
- I got a cold, got over it, and got a worse cold. Calla had the same (first) cold, got over it, and then had some virus that caused her to run a high fever, and now she seems to have another cold. Ugh.
- I got a flat tire and needed four new tires and two weeks later, Aris got two flat tires and needed four new tires. The universe is clearly against us.
- Friday two weeks ago was the last day for one of my staff members, which was bittersweet. I'm happy for her new opportunity, but we miss her and I'm worried for the rest of my staff to have to take on more responsibilities.
- I am lucky to have a really great staff who can handle things when I'm not in. They all have willingly (some of them even eagerly) taken on so much more this semester, and I am so grateful for them!
- I had my second chemo treatment on Wednesday the 18th. My port actually worked, and there were no unexpected surprises. Yay for small miracles!
- So far my plan to work on Mondays after my treatments does not seem to be working. Both Mondays I've tried to go in, but I've felt so awful that I just couldn't. This past Monday, I started throwing up and feeling dizzy in the shower, and I actually thought I was going to pass out. Luckily Aris helped me out of the shower. I was able to work both days from home, but my whole reason for getting chemo on Wednesdays was so I would be able to go into work on Monday for our staff meetings. Oh well.
- After my first chemo treatment, I was feeling mostly back to normal by Tuesday afternoon/evening. This chemo was harder to recover from, and it took me until Thursday to really feel better. I'm really worried that this will keep getting worse treatment by treatment.
- I am very lucky to have family come to help me/us after every treatment. My mom came last weekend, and my sister is coming next weekend.
- As another sign that the universe is against us, Aris' hours are getting cut at work. The thing that really sucks about this is that in November, he was told that would be going full-time, but now it doesn't look like that's going to happen. He was hired as a temp almost a year ago, and I guess he's going to stay a temp for the foreseeable future. This also means that he doesn't have benefits because we thought he was going full-time.
- Calla has stopped taking naps at home and at preschool, which makes evenings such a joy.
- It's been ridiculously cold and snowy, and I'm SO over winter!
Okay, I'm done whining about life now, I guess. I'll finish up with a few words on hair. My hair has officially fallen out...for the most part. I chopped my hair super short on Valentine's Day, and then Aris buzzed it on Sunday. That Wednesday (the 18th) the stubble I had left started falling out with a vengeance. It was actually obnoxious as hell when it was falling out - there were little 1/4 inch pieces of hair EVERYWHERE, and I felt like it kept getting in my mouth. Yuck. Now I just have a little fuzz left, but honestly I just wish it would all fall out because it looks pretty bad. I've officially become a hat person, but my head doesn't seem to be the right shape for hats to stay on, so I'm constantly tugging at my hat to keep it in place. I think maybe I should use double-sided tape or something. Also, it's really cold without hair!
So instead of giving a blow-by-blow of my last three weeks, which quite frankly would be depressing and boring, I'll just list some highlights:
- I got a cold, got over it, and got a worse cold. Calla had the same (first) cold, got over it, and then had some virus that caused her to run a high fever, and now she seems to have another cold. Ugh.
- I got a flat tire and needed four new tires and two weeks later, Aris got two flat tires and needed four new tires. The universe is clearly against us.
- Friday two weeks ago was the last day for one of my staff members, which was bittersweet. I'm happy for her new opportunity, but we miss her and I'm worried for the rest of my staff to have to take on more responsibilities.
- I am lucky to have a really great staff who can handle things when I'm not in. They all have willingly (some of them even eagerly) taken on so much more this semester, and I am so grateful for them!
- I had my second chemo treatment on Wednesday the 18th. My port actually worked, and there were no unexpected surprises. Yay for small miracles!
- So far my plan to work on Mondays after my treatments does not seem to be working. Both Mondays I've tried to go in, but I've felt so awful that I just couldn't. This past Monday, I started throwing up and feeling dizzy in the shower, and I actually thought I was going to pass out. Luckily Aris helped me out of the shower. I was able to work both days from home, but my whole reason for getting chemo on Wednesdays was so I would be able to go into work on Monday for our staff meetings. Oh well.
- After my first chemo treatment, I was feeling mostly back to normal by Tuesday afternoon/evening. This chemo was harder to recover from, and it took me until Thursday to really feel better. I'm really worried that this will keep getting worse treatment by treatment.
- I am very lucky to have family come to help me/us after every treatment. My mom came last weekend, and my sister is coming next weekend.
- As another sign that the universe is against us, Aris' hours are getting cut at work. The thing that really sucks about this is that in November, he was told that would be going full-time, but now it doesn't look like that's going to happen. He was hired as a temp almost a year ago, and I guess he's going to stay a temp for the foreseeable future. This also means that he doesn't have benefits because we thought he was going full-time.
- Calla has stopped taking naps at home and at preschool, which makes evenings such a joy.
- It's been ridiculously cold and snowy, and I'm SO over winter!
Okay, I'm done whining about life now, I guess. I'll finish up with a few words on hair. My hair has officially fallen out...for the most part. I chopped my hair super short on Valentine's Day, and then Aris buzzed it on Sunday. That Wednesday (the 18th) the stubble I had left started falling out with a vengeance. It was actually obnoxious as hell when it was falling out - there were little 1/4 inch pieces of hair EVERYWHERE, and I felt like it kept getting in my mouth. Yuck. Now I just have a little fuzz left, but honestly I just wish it would all fall out because it looks pretty bad. I've officially become a hat person, but my head doesn't seem to be the right shape for hats to stay on, so I'm constantly tugging at my hat to keep it in place. I think maybe I should use double-sided tape or something. Also, it's really cold without hair!
Saturday, February 7, 2015
Post-chemo update
It's been just over 72 hours since my first chemo treatment, and I must say I feel fairly crappy. It's not anything unexpected, but crappy nonetheless. Mostly, I'm very tired and I have a pretty much consistent headache that goes from really bad to just vaguely there. Luckily, thanks to really good anti-nausea meds, I'm not really nauseous, but I don't have much of an appetite. I was told that my tastes may change, and I have noticed that a bit. My drink of choice, Orange Vitamin Water Zero, which I used to drink all the time, doesn't taste good to me anymore. I guess my ability to taste sweet is reduced or different or something, so it just tastes kind of salty now. Yuck. Luckily, water is tasting pretty good, which is good since that's what I'm supposed to be drinking to flush the chemo out of my system.
For those who were wondering, my hair hasn't fallen out yet, much to Calla's surprise. It takes 1 - 2 weeks to fall out, so I figure I still probably have until next weekend. I really don't want to deal with all of the hair everywhere, so I'm thinking Aris can shave my head as part of a special Valentine's weekend.
I ended up deciding to work from home instead of using most of my energy to go into work on Thursday, which I think was a good decision since I got through almost all of my emails since Monday. I also nodded off on the couch numerous times, which would have been awkward at work. That afternoon I had to go into to the Cancer Center to get my Neulasta shot, which was fairly simple and easy. So my first day post-chemo wasn't very good, but it wasn't terrible either.
On Friday, I woke up feeling worse. Mainly, I couldn't get out of bed for several hours and my head was throbbing. I'm not sleeping great...I can't seem to stay asleep more than 3-4 hours straight, but I also can't stay awake for long periods of time. It's kind of annoying. Honestly, though, I don't really care as much about being tired if my head would just stop hurting. I'm managing it with Advil and Excedrin Migraine, which is having mixed results.
This morning was honestly a little rough in our house, as I was feeling pretty crappy, Calla was being hyper, and Aris was at the end of his rope. Luckily, reinforcements have arrived in the form of grandparents to entertain Calla. My biggest fear at this point is whether I'll be ready to go back to work on Monday morning. I want to have a "normal" week next week, but I don't know if I'll be physically able.
Actually, that's my biggest short-term fear. My biggest long-fear is that I have to have SEVEN more chemo treatments. And apparently the chemo treatments have a cumulative effect, so each one gets worse. I really hope that doesn't end up being true, but I guess I'll find out.
For those who were wondering, my hair hasn't fallen out yet, much to Calla's surprise. It takes 1 - 2 weeks to fall out, so I figure I still probably have until next weekend. I really don't want to deal with all of the hair everywhere, so I'm thinking Aris can shave my head as part of a special Valentine's weekend.
I ended up deciding to work from home instead of using most of my energy to go into work on Thursday, which I think was a good decision since I got through almost all of my emails since Monday. I also nodded off on the couch numerous times, which would have been awkward at work. That afternoon I had to go into to the Cancer Center to get my Neulasta shot, which was fairly simple and easy. So my first day post-chemo wasn't very good, but it wasn't terrible either.
On Friday, I woke up feeling worse. Mainly, I couldn't get out of bed for several hours and my head was throbbing. I'm not sleeping great...I can't seem to stay asleep more than 3-4 hours straight, but I also can't stay awake for long periods of time. It's kind of annoying. Honestly, though, I don't really care as much about being tired if my head would just stop hurting. I'm managing it with Advil and Excedrin Migraine, which is having mixed results.
This morning was honestly a little rough in our house, as I was feeling pretty crappy, Calla was being hyper, and Aris was at the end of his rope. Luckily, reinforcements have arrived in the form of grandparents to entertain Calla. My biggest fear at this point is whether I'll be ready to go back to work on Monday morning. I want to have a "normal" week next week, but I don't know if I'll be physically able.
Actually, that's my biggest short-term fear. My biggest long-fear is that I have to have SEVEN more chemo treatments. And apparently the chemo treatments have a cumulative effect, so each one gets worse. I really hope that doesn't end up being true, but I guess I'll find out.
Wednesday, February 4, 2015
Some fun, port insertion, and first chemo treatment
This time I'll start with the good stuff first. My mother, sister, and nephews came to visit this weekend just to see me, which is the first time anyone has come to visit ME (not my much cuter daughter) since before Calla was born. We went to the Massanutten Water Park (which is indoors, obviously) on Saturday. We had lots of fun, especially Calla, who loves the water! It was so nice to be able to take my mind off the fact that I have cancer and just enjoy spending time with my family. And my mother and sister insisted on paying for everything over the weekend - the waterpark, lunch, dinner, breakfast. I feel so spoiled, so thank you to them for that and for visiting!
I also have to thank my husband for all of his love and support, which I haven't really done yet, because I'm a jerk. Aris has been so great, and it's so helpful knowing that I have his unconditional love and support. And apparently our fundraising is now over $6000! Wow! Thank you everyone. That is amazing!
Onto business...yesterday I had outpatient surgery to have the portacath inserted in my chest. I had a choice between general anesthesia and to stay awake, but obviously be very drowsy and not feel much. I chose not to have general anesthesia, so I vaguely remember the procedure. I remember saying "ouch" a lot. After the surgery, I found out that the doctor couldn't "find" a subclavical vein, so he had to run the catheter up to a vein in my neck. The surgeon told this to my husband after the surgery and apparently told me during the procedure, but I don't remember that. I wish I did, because I hope I asked what the hell he was talking about. What do you mean you can't "find" the vein? It's got to be there - look a little harder! Instead I have a nice hematoma on my neck, and I can kind of feel the catheter under my skin in my neck - ewww.
Also, last night I was feeling the back of neck and there was a whole bunch of dried blood back there by my hairline and in my hair. I said "wow" and Aris came over to look at it and said, "Wow, that's a lot of dried blood." Again, I was sort of awake during the procedure, and I don't remember anyone saying, "Uh oh, a whole bunch of blood is running behind her neck into her hair." That's what I would think someone would say, and I think I would remember that. But, regardless, the port is in. And other than some bruising and a somewhat ugly incision, it's fine.
I guess the big news for this post is that today I had my first chemo treatment. Of course it couldn't just go as planned, so first thing the oncologist told us some bad news. And FYI, this wasn't even my oncologist, who apparently went on vacation this week. Grrrr. So substitute oncologist informed us that my insurance, which you may remember previously denied a PET scan, also denied my treatment plan because it includes herceptin.
As you may or may not remember, my HER2 results were equivocol - not negative or positive. Because the results weren't positive, and apparently herceptin is expensive, my insurance company denied it. Since all they care about is making money and not me actually getting well and staying cancer-free long-term, they decided that it doesn't matter what my oncologist thinks if it's too expensive. So here's something I don't understand...someone actually went to medical school, became a doctor, and then went to work for an insurance company so they can use their education to approve or deny people's life-saving claims? Seriously? This is how you want to use that education? That's just sad to me. It's probably all of the doctors who finished last in their med school class making decisions about my medical treatment. Fucking douchebags. Seriously, if any of my family or friends who are doctors or are in the medical profession are reading this, can you help me out with this? Who are these asshat doctors working for insurance companies?
But I digress...so instead of what I thought I was getting, I'm back to getting 4 cycles of Adriamycin and Cytoxan and then 4 cycles of Taxol two weeks apart. So more chemo cycles, closer together, with worse side effects, and it may not be as effective. Thank you, Anthem Blue Cross Blue Shield, you are the worst health insurance ever. Karma is a bitch, you jackasses.
With that said, you would think the rest of the treatment would go well to make up for the initial crap-fest, but no. My port didn't work. There was no "blood return," i.e. the nurse couldn't draw blood out of the port. So they couldn't use the port and had to put in an IV - my third IV and fifth stick in a week. Why did I even get the damn port if I have to have an IV?!? The nurse was hopeful that it just didn't work because it was only put in yesterday, and will be okay for my next chemo treatment. She'd better be right! Grrrr again.
Right now, we're about 7 hours post-chemo, and I feel okay but very tired. Also a little icky and "fuzzy" (I hope this post makes sense!), but not too bad. I have lots of meds for the nausea, but there's not much they can do for the tired and icky. We'll see how I feel tomorrow morning if I am up to going to work, which was my plan with the other chemo treatment plan. By tomorrow night/Friday morning I'm guessing I'll feel really crappy, but we'll see. Tomorrow afternoon I have to go get a Neulasta shot to help with my blood counts. In a week I have to go get my blood counts checked. My next treatment is in two weeks. Hopefully by then my port will be functioning properly, and I'll at least know what to expect afterward, good or bad.
I also have to thank my husband for all of his love and support, which I haven't really done yet, because I'm a jerk. Aris has been so great, and it's so helpful knowing that I have his unconditional love and support. And apparently our fundraising is now over $6000! Wow! Thank you everyone. That is amazing!
Onto business...yesterday I had outpatient surgery to have the portacath inserted in my chest. I had a choice between general anesthesia and to stay awake, but obviously be very drowsy and not feel much. I chose not to have general anesthesia, so I vaguely remember the procedure. I remember saying "ouch" a lot. After the surgery, I found out that the doctor couldn't "find" a subclavical vein, so he had to run the catheter up to a vein in my neck. The surgeon told this to my husband after the surgery and apparently told me during the procedure, but I don't remember that. I wish I did, because I hope I asked what the hell he was talking about. What do you mean you can't "find" the vein? It's got to be there - look a little harder! Instead I have a nice hematoma on my neck, and I can kind of feel the catheter under my skin in my neck - ewww.
Also, last night I was feeling the back of neck and there was a whole bunch of dried blood back there by my hairline and in my hair. I said "wow" and Aris came over to look at it and said, "Wow, that's a lot of dried blood." Again, I was sort of awake during the procedure, and I don't remember anyone saying, "Uh oh, a whole bunch of blood is running behind her neck into her hair." That's what I would think someone would say, and I think I would remember that. But, regardless, the port is in. And other than some bruising and a somewhat ugly incision, it's fine.
I guess the big news for this post is that today I had my first chemo treatment. Of course it couldn't just go as planned, so first thing the oncologist told us some bad news. And FYI, this wasn't even my oncologist, who apparently went on vacation this week. Grrrr. So substitute oncologist informed us that my insurance, which you may remember previously denied a PET scan, also denied my treatment plan because it includes herceptin.
As you may or may not remember, my HER2 results were equivocol - not negative or positive. Because the results weren't positive, and apparently herceptin is expensive, my insurance company denied it. Since all they care about is making money and not me actually getting well and staying cancer-free long-term, they decided that it doesn't matter what my oncologist thinks if it's too expensive. So here's something I don't understand...someone actually went to medical school, became a doctor, and then went to work for an insurance company so they can use their education to approve or deny people's life-saving claims? Seriously? This is how you want to use that education? That's just sad to me. It's probably all of the doctors who finished last in their med school class making decisions about my medical treatment. Fucking douchebags. Seriously, if any of my family or friends who are doctors or are in the medical profession are reading this, can you help me out with this? Who are these asshat doctors working for insurance companies?
But I digress...so instead of what I thought I was getting, I'm back to getting 4 cycles of Adriamycin and Cytoxan and then 4 cycles of Taxol two weeks apart. So more chemo cycles, closer together, with worse side effects, and it may not be as effective. Thank you, Anthem Blue Cross Blue Shield, you are the worst health insurance ever. Karma is a bitch, you jackasses.
With that said, you would think the rest of the treatment would go well to make up for the initial crap-fest, but no. My port didn't work. There was no "blood return," i.e. the nurse couldn't draw blood out of the port. So they couldn't use the port and had to put in an IV - my third IV and fifth stick in a week. Why did I even get the damn port if I have to have an IV?!? The nurse was hopeful that it just didn't work because it was only put in yesterday, and will be okay for my next chemo treatment. She'd better be right! Grrrr again.
Right now, we're about 7 hours post-chemo, and I feel okay but very tired. Also a little icky and "fuzzy" (I hope this post makes sense!), but not too bad. I have lots of meds for the nausea, but there's not much they can do for the tired and icky. We'll see how I feel tomorrow morning if I am up to going to work, which was my plan with the other chemo treatment plan. By tomorrow night/Friday morning I'm guessing I'll feel really crappy, but we'll see. Tomorrow afternoon I have to go get a Neulasta shot to help with my blood counts. In a week I have to go get my blood counts checked. My next treatment is in two weeks. Hopefully by then my port will be functioning properly, and I'll at least know what to expect afterward, good or bad.
Friday, January 30, 2015
Feeling grateful and mostly hopeful
As expected, this week has been a whirlwind of appointments, tests, and scheduling more appointments and tests. On Tuesday, I had my surgical consultation for the port insertion. On Wednesday, I had an MRI and CT scan, on Thursday I had my first appointment with the oncologist, and this morning I had my anesthesiologist consultation for the port insertion. Next Monday I actually don't have any appointments (yet)! Next Tuesday I have an EKG scheduled bright and early and then I have the surgery to have the port inserted, and on Wednesday I start chemo.
So let me just start with the MRI and CT scan on Wednesday afternoon, which was quite an experience. First of all, on my way from work to the hospital, I had to drink two big bottles of barium contrast "berry smoothie." To imagine what this tastes like, first think about what an actual berry smoothie tastes like. Now imagine someone has replaced about half of the berries with Elmer's glue, and you have to drink about a quart of it. So by the time my MRI started, I was a bit queasy, but I didn't throw up so I consider that a win.
The MRI itself was not exactly fun either, nor was it what I was expecting. Basically, I had to lay on my stomach with my boobs hanging into holes and all of my upper body weight on a padded bar on my sternum and a padded hole for my face. Then they gave me some headphones and backed me into a tube, where I lay in that extremely comfortable position for over half an hour. They play music on the headphones, but I could barely hear it over the MRI machine. Good lord, that thing is loud! Halfway through the MRI, they gave me intravenous contrast, so at least I knew when it was halfway through, but that seemed like a very long 30-35 minutes.
My CT scan was scheduled for the same afternoon as the MRI, but not for 3 hours after the MRI was done. So I got to hang out in the Imaging Department for basically the entire afternoon with an IV in my arm. It was as much fun as it sounds. The good news is, though, that everything came back fine - nothing suspicious on the CT scan and only what we already knew about on the MRI. So yay, I officially have Stage 2 Breast Cancer, which is a hell of a lot better than stage 3 or 4!
Also, I finally got the HER2 pathology results, and they were "equivocal," not negative or positive. So that really clears things up. What that does mean is that my chemo treatment will be a little different than what I thought, but in a good way it seems. Instead of having 4 cycles of Adriamycin and Cytoxan and then 4 cycles of Taxol, I will have 6 cycles of Taxotere, Carboplatin, Herceptin, and Perjeta, and they will be 3 weeks apart instead of 2. So it's 18 weeks instead of 16, but fewer actual doses and more time in between, so I'll take it! I think that will make things easier for me to continue working, and that is causing me less stress right now.
The only bad about that is that I need to get the Herceptin every three weeks for a YEAR! But the Herceptin doesn't really have any really bad side effects like hair loss or feeling awful, so I guess it will be okay. And I guess I need to start forming a close relationship with my oncologist since even after all of this treatment, I'll need to meet with him once a year for forever. He seems pretty decent, though, so I guess that will be okay.
Overall, I'm feeling much more grateful and positive this week. This past weekend and the beginning of the week was tough, and I was just pissed about this whole situation, but I've slowly gotten over that. I honestly have a lot to be thankful for. Mostly I'm thankful that this isn't a death sentence. From the very beginning I've said that as long as I'm still alive to raise my daughter and watch her grow up, everything will be fine, and I'm feeling very optimistic about that.
I'm also thankful that I work with a great staff, who have been supportive and willingly taken on more duties and responsibilities to take the load off of me. And I'm excited for this weekend because my mother, sister, and younger nephews are visiting and we're going to the local indoor water park! Lastly, I want to say how grateful I am for all of the Facebook messages, emails, cards, and well wishes I've gotten. Thank you for caring!
And to be honest, I can't believe my sister has managed to raise over $1000 for my medical bills already! I had mixed feelings about her doing fundraising, because I feel like we're fine financially while there are other people who don't have money for housing or shelter. But, as she said, we don't have $6000 lying around for medical bills. This stupid high deductible health insurance is the worst. Honestly, I feel like there are so many more worthy causes out there than my stupid breast cancer, but I really am very grateful.
She asked me to plug this on here, so if you have a few extra bucks and want to see it go towards my medical bills, you can donate here: http://www.youcaring.com/medical-fundraiser/help-dawn-fight-breast-cancer/296413. Or if you would like to buy some stuff from Origami Owl (lockets and jewelry and stuff), the proceeds of which will go toward my medical fund, you can go here http://whoareyoudesigns.origamiowl.com/parties/DawnsMedicalFund596573/collections.ashx. Seriously, though, don't feel obligated. I won't be offended if you donate your money to the sad Sarah McLachlan ASPCA commercials instead...they probably need it more than me.
I think the bottom line behind all of this is that this whole process is going to be long and really suck at times, but it's not going to last forever and maybe (hopefully) life will be even better afterwards. I've always believed that everything happens for a reason, so I'm trying to keep that in mind.
So let me just start with the MRI and CT scan on Wednesday afternoon, which was quite an experience. First of all, on my way from work to the hospital, I had to drink two big bottles of barium contrast "berry smoothie." To imagine what this tastes like, first think about what an actual berry smoothie tastes like. Now imagine someone has replaced about half of the berries with Elmer's glue, and you have to drink about a quart of it. So by the time my MRI started, I was a bit queasy, but I didn't throw up so I consider that a win.
The MRI itself was not exactly fun either, nor was it what I was expecting. Basically, I had to lay on my stomach with my boobs hanging into holes and all of my upper body weight on a padded bar on my sternum and a padded hole for my face. Then they gave me some headphones and backed me into a tube, where I lay in that extremely comfortable position for over half an hour. They play music on the headphones, but I could barely hear it over the MRI machine. Good lord, that thing is loud! Halfway through the MRI, they gave me intravenous contrast, so at least I knew when it was halfway through, but that seemed like a very long 30-35 minutes.
My CT scan was scheduled for the same afternoon as the MRI, but not for 3 hours after the MRI was done. So I got to hang out in the Imaging Department for basically the entire afternoon with an IV in my arm. It was as much fun as it sounds. The good news is, though, that everything came back fine - nothing suspicious on the CT scan and only what we already knew about on the MRI. So yay, I officially have Stage 2 Breast Cancer, which is a hell of a lot better than stage 3 or 4!
Also, I finally got the HER2 pathology results, and they were "equivocal," not negative or positive. So that really clears things up. What that does mean is that my chemo treatment will be a little different than what I thought, but in a good way it seems. Instead of having 4 cycles of Adriamycin and Cytoxan and then 4 cycles of Taxol, I will have 6 cycles of Taxotere, Carboplatin, Herceptin, and Perjeta, and they will be 3 weeks apart instead of 2. So it's 18 weeks instead of 16, but fewer actual doses and more time in between, so I'll take it! I think that will make things easier for me to continue working, and that is causing me less stress right now.
The only bad about that is that I need to get the Herceptin every three weeks for a YEAR! But the Herceptin doesn't really have any really bad side effects like hair loss or feeling awful, so I guess it will be okay. And I guess I need to start forming a close relationship with my oncologist since even after all of this treatment, I'll need to meet with him once a year for forever. He seems pretty decent, though, so I guess that will be okay.
Overall, I'm feeling much more grateful and positive this week. This past weekend and the beginning of the week was tough, and I was just pissed about this whole situation, but I've slowly gotten over that. I honestly have a lot to be thankful for. Mostly I'm thankful that this isn't a death sentence. From the very beginning I've said that as long as I'm still alive to raise my daughter and watch her grow up, everything will be fine, and I'm feeling very optimistic about that.
I'm also thankful that I work with a great staff, who have been supportive and willingly taken on more duties and responsibilities to take the load off of me. And I'm excited for this weekend because my mother, sister, and younger nephews are visiting and we're going to the local indoor water park! Lastly, I want to say how grateful I am for all of the Facebook messages, emails, cards, and well wishes I've gotten. Thank you for caring!
And to be honest, I can't believe my sister has managed to raise over $1000 for my medical bills already! I had mixed feelings about her doing fundraising, because I feel like we're fine financially while there are other people who don't have money for housing or shelter. But, as she said, we don't have $6000 lying around for medical bills. This stupid high deductible health insurance is the worst. Honestly, I feel like there are so many more worthy causes out there than my stupid breast cancer, but I really am very grateful.
She asked me to plug this on here, so if you have a few extra bucks and want to see it go towards my medical bills, you can donate here: http://www.youcaring.com/medical-fundraiser/help-dawn-fight-breast-cancer/296413. Or if you would like to buy some stuff from Origami Owl (lockets and jewelry and stuff), the proceeds of which will go toward my medical fund, you can go here http://whoareyoudesigns.origamiowl.com/parties/DawnsMedicalFund596573/collections.ashx. Seriously, though, don't feel obligated. I won't be offended if you donate your money to the sad Sarah McLachlan ASPCA commercials instead...they probably need it more than me.
I think the bottom line behind all of this is that this whole process is going to be long and really suck at times, but it's not going to last forever and maybe (hopefully) life will be even better afterwards. I've always believed that everything happens for a reason, so I'm trying to keep that in mind.
Monday, January 26, 2015
Stress and a second opinion
I guess I should just start with the bad news...my lymph node biopsy was positive. So my cancer has at least spread to one lymph node, and I have more tests this week to make sure it hasn't spread further. My life has started to revolve around doctor's appointments and medical tests. Also, my insurance won't approve a PET scan, so they suck. I have to have a CT scan instead, and I'm thinking that if a CT scan were the best test, my doctor would have just ordered a CT scan and not a PET scan to begin with. Is the PET scan more expensive or something? Did I mention that my insurance company sucks?
Overall, the enormity of this situation is definitely sinking in, and I was feeling very stressed and overwhelmed this weekend. Work is what I am feeling the most stressed out about, which honestly just pisses me off. I have cancer for crap's sake. I'm starting chemo in a week or so. I'm most likely going to have my breast or breasts surgically removed. I really shouldn't have to worry about all this work crap too.
And the thing is that on a personal level, I feel very supported at work. My coworkers are kind, caring people, and so many have offered support in whatever way they can. And thank goodness for a coworker who I could call over the weekend to help me start making a plan and stop freaking out so much. So there are only two problems. First of all, who has the time and the skills to take on some or all of my work? And institutionally, I really worry about the support that the college will give me. I am trying to schedule a meeting with the HR Director, but I'm afraid that I'm going to be told that when I run out of PTO, I'm screwed. I have about 20 days saved because I haven't taken a vacation since I started working there and I only take days off when I'm really sick or have to take care of Calla, but that won't cover the time I will likely need for chemo and the 2-3 weeks I'll need to take off for surgery. It doesn't seem fair that I should have to use all of the time I've saved up because I have cancer, especially when I'm going to work as much as I possibly can. Although honestly, I'm starting to think that if it doesn't benefit us financially, and it causes me more stress, maybe I will go out on disability. I just don't know what I'm going to do, and I HATE not having a plan.
We also went shopping this weekend to get a few scarves and hats. My mom also found a website that I'm probably going to order a few hats from. It's a little surreal to actually think about having no hair. I don't think I have a very good skull shape, so it's a good thing this is temporary.
Today I had my second opinion at the hospital Aris works for, Augusta Health. I've felt good about RMH so far, so this was really to get a different perspective and maybe a little peace of mind. It also gave me the opportunity to have yet another individual examine my boobs. Since I probably won't have them much longer, I figure I might as well give everyone in the medical field the opportunity to inspect them. I really don't think this many people looked at my boobs when I was breastfeeding. Seriously though, the appointment was helpful both in terms of answering some questions that we both had and making us feel confident that we are taking the right course of action. I'm going to stick with RMH, as I had thought I would, but I'm glad I had the second opinion.
One of the things the doctor said today that really resonated with me is that breast cancer treatment is a marathon, not a sprint. The thing about that, though, is that I've NEVER wanted to do a marathon. I have cousins and former coworkers that are all about running marathons. I'm not...it's not my thing. The only kind of marathon I like is a Top Chef or Walking Dead marathon on TV, but I don't think that's the kind of marathon he meant. I'm a little pissed about having to do this marathon, but I don't really have a choice, do I?
Overall, the enormity of this situation is definitely sinking in, and I was feeling very stressed and overwhelmed this weekend. Work is what I am feeling the most stressed out about, which honestly just pisses me off. I have cancer for crap's sake. I'm starting chemo in a week or so. I'm most likely going to have my breast or breasts surgically removed. I really shouldn't have to worry about all this work crap too.
And the thing is that on a personal level, I feel very supported at work. My coworkers are kind, caring people, and so many have offered support in whatever way they can. And thank goodness for a coworker who I could call over the weekend to help me start making a plan and stop freaking out so much. So there are only two problems. First of all, who has the time and the skills to take on some or all of my work? And institutionally, I really worry about the support that the college will give me. I am trying to schedule a meeting with the HR Director, but I'm afraid that I'm going to be told that when I run out of PTO, I'm screwed. I have about 20 days saved because I haven't taken a vacation since I started working there and I only take days off when I'm really sick or have to take care of Calla, but that won't cover the time I will likely need for chemo and the 2-3 weeks I'll need to take off for surgery. It doesn't seem fair that I should have to use all of the time I've saved up because I have cancer, especially when I'm going to work as much as I possibly can. Although honestly, I'm starting to think that if it doesn't benefit us financially, and it causes me more stress, maybe I will go out on disability. I just don't know what I'm going to do, and I HATE not having a plan.
We also went shopping this weekend to get a few scarves and hats. My mom also found a website that I'm probably going to order a few hats from. It's a little surreal to actually think about having no hair. I don't think I have a very good skull shape, so it's a good thing this is temporary.
Today I had my second opinion at the hospital Aris works for, Augusta Health. I've felt good about RMH so far, so this was really to get a different perspective and maybe a little peace of mind. It also gave me the opportunity to have yet another individual examine my boobs. Since I probably won't have them much longer, I figure I might as well give everyone in the medical field the opportunity to inspect them. I really don't think this many people looked at my boobs when I was breastfeeding. Seriously though, the appointment was helpful both in terms of answering some questions that we both had and making us feel confident that we are taking the right course of action. I'm going to stick with RMH, as I had thought I would, but I'm glad I had the second opinion.
One of the things the doctor said today that really resonated with me is that breast cancer treatment is a marathon, not a sprint. The thing about that, though, is that I've NEVER wanted to do a marathon. I have cousins and former coworkers that are all about running marathons. I'm not...it's not my thing. The only kind of marathon I like is a Top Chef or Walking Dead marathon on TV, but I don't think that's the kind of marathon he meant. I'm a little pissed about having to do this marathon, but I don't really have a choice, do I?
Thursday, January 22, 2015
Another day, another biopsy
This morning was my first doctor's appointment since my cancer diagnosis. I'm going to be honest and say that I really didn't want to go this morning. I may have, somewhat jokingly, said to Aris, "I feel fine...maybe I'll just ignore this whole thing." This is the type of situation when he really doesn't appreciate my sense of humor. Obviously, I went to the appointment, but I wasn't particularly happy about it.
Since it was a doctor's appointment, the first step of course was to fill out about six questionnaires that all asked the same questions. At the top of the second page, it asked "What is the reason for your visit?" Seriously? If you don't know that, I'm in deep shit. So I wrote "Apparently I have breast cancer." I wanted to write "as you clearly know," but even I know that may have crossed a line.
The very first thing they did was an ultrasound of the lymph nodes on my "cancer side." And of course, there was one lymph node that looked abnormal, so they told me I would need to have a lymph node biopsy. See? This is why I didn't even want to come to the appointment. Sigh.
Then the "Breast Health Navigator" (that's her actual job title, I swear) and breast surgeon came in and proceeded to examine my breasts at the same time - one on each side, and then they switched. So that was weird. Then they went over more details about my pathology report. My cancer is ER (estrogen receptor) and PR (progesterone) positive, which is apparently good. They still don't know my HER2 status, which apparently will affect the type of chemo they give me. My largest tumor is 3.6 cm. So I most likely have Stage II Breast Cancer.
And then we actually discussed my treatment. As I anticipated, I will have neoadjuvant chemotherapy, i.e. chemo before surgery. Most likely, I will have eight 2-week chemo cycles. So 16 weeks of chemo, which is better than the 24 weeks that I thought was possible. Next week I will have an MRI, a PET scan, meet with the oncologist, and get a port surgically implanted. In addition to, you know, trying to work, raise my child, and live my life. The doctor said that my chemo may start as early as next week, but since I'm not meeting with the oncologist until Thursday afternoon, I'm thinking it will actually be the following week.
We talked about whether I could/should continue to work during chemo, and she seemed to think it was very possible. So I'm thinking that I will at least try to only take 2-3 days off on and after the days I have chemo and try to keep working otherwise. It will really just depend on how sick I get, which we won't know until the chemo starts. Part of me really wants to keep working, because I do actually enjoy my work. And I think it would be a little more stressful for me to be away for 6 months and not know what I'm coming back to. I work with great people, but I might possibly be a bit of a control freak. There is also a part of me that just wants to lie on the couch and watch TV all day during my treatment, but it is possible that could get old after a while.
The doctor also said that since I have four "masses," I will almost definitely need a mastectomy as opposed to a lumpectomy. I was still holding out hope that I would be able to save my breast, but this wasn't that surprising really. I can probably have reconstructive surgery at the same time, so there's that at least. But the surgery itself is still five months away, so that's not my main concern right now.
I also had blood drawn for genetic testing, so that could potentially change some treatment decisions. Finally, I had my second biopsy in a week, this time of one of my lymph nodes. It was an easier biopsy than the one of my breast, although as I type this my armpit still hurts. And it was a little annoying that we had to wait about half an hour for the doctor after I was all prepped for the biopsy. I'm supposed to find out the biopsy results tomorrow, and obviously that could affect my treatment as well. So let's just say that everything isn't written in stone yet.
Aris and I are trying to figure out how to tell Calla about all of this. I don't want to tell her more than I need to, but there are clearly some things she's going to notice. Like her parents suddenly having the same hair style. So tonight Aris and I tried to talk to her about mommy not having any hair. She was not happy about that idea, which worries me a little. I honestly didn't think she'd care that much about me losing my hair, but it seems to bother her. So we'll keep talking to her, and hopefully it will just take some time for her to adjust to what's going on.
Since it was a doctor's appointment, the first step of course was to fill out about six questionnaires that all asked the same questions. At the top of the second page, it asked "What is the reason for your visit?" Seriously? If you don't know that, I'm in deep shit. So I wrote "Apparently I have breast cancer." I wanted to write "as you clearly know," but even I know that may have crossed a line.
The very first thing they did was an ultrasound of the lymph nodes on my "cancer side." And of course, there was one lymph node that looked abnormal, so they told me I would need to have a lymph node biopsy. See? This is why I didn't even want to come to the appointment. Sigh.
Then the "Breast Health Navigator" (that's her actual job title, I swear) and breast surgeon came in and proceeded to examine my breasts at the same time - one on each side, and then they switched. So that was weird. Then they went over more details about my pathology report. My cancer is ER (estrogen receptor) and PR (progesterone) positive, which is apparently good. They still don't know my HER2 status, which apparently will affect the type of chemo they give me. My largest tumor is 3.6 cm. So I most likely have Stage II Breast Cancer.
And then we actually discussed my treatment. As I anticipated, I will have neoadjuvant chemotherapy, i.e. chemo before surgery. Most likely, I will have eight 2-week chemo cycles. So 16 weeks of chemo, which is better than the 24 weeks that I thought was possible. Next week I will have an MRI, a PET scan, meet with the oncologist, and get a port surgically implanted. In addition to, you know, trying to work, raise my child, and live my life. The doctor said that my chemo may start as early as next week, but since I'm not meeting with the oncologist until Thursday afternoon, I'm thinking it will actually be the following week.
We talked about whether I could/should continue to work during chemo, and she seemed to think it was very possible. So I'm thinking that I will at least try to only take 2-3 days off on and after the days I have chemo and try to keep working otherwise. It will really just depend on how sick I get, which we won't know until the chemo starts. Part of me really wants to keep working, because I do actually enjoy my work. And I think it would be a little more stressful for me to be away for 6 months and not know what I'm coming back to. I work with great people, but I might possibly be a bit of a control freak. There is also a part of me that just wants to lie on the couch and watch TV all day during my treatment, but it is possible that could get old after a while.
The doctor also said that since I have four "masses," I will almost definitely need a mastectomy as opposed to a lumpectomy. I was still holding out hope that I would be able to save my breast, but this wasn't that surprising really. I can probably have reconstructive surgery at the same time, so there's that at least. But the surgery itself is still five months away, so that's not my main concern right now.
I also had blood drawn for genetic testing, so that could potentially change some treatment decisions. Finally, I had my second biopsy in a week, this time of one of my lymph nodes. It was an easier biopsy than the one of my breast, although as I type this my armpit still hurts. And it was a little annoying that we had to wait about half an hour for the doctor after I was all prepped for the biopsy. I'm supposed to find out the biopsy results tomorrow, and obviously that could affect my treatment as well. So let's just say that everything isn't written in stone yet.
Aris and I are trying to figure out how to tell Calla about all of this. I don't want to tell her more than I need to, but there are clearly some things she's going to notice. Like her parents suddenly having the same hair style. So tonight Aris and I tried to talk to her about mommy not having any hair. She was not happy about that idea, which worries me a little. I honestly didn't think she'd care that much about me losing my hair, but it seems to bother her. So we'll keep talking to her, and hopefully it will just take some time for her to adjust to what's going on.
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