So, once again, it has been a long time since my last post. To say that I have been busy at work would be a gross understatement. Partially, it's that time of the year in the world of Student Affairs and Residence Life in particular, but also we've been short-staffed since February. So there's that, too. Thankfully, beginning tomorrow, we will once again be fully staffed - pro and student staff! (I really hope I didn't just jinx that.)
To back up a few months, my big news is that I survived surgery! This is not being written from beyond the grave. In fact, recovery really wasn't too bad. I mean, it wasn't fun, but painkillers and muscle relaxers definitely helped a lot. Up until my C-section, any narcotic painkiller used to make me sick. I took morphine, demerol, and codeine after surgery I had on my arm in college, and I threw up. I took percocet after I had my wisdom teeth out - more puking (that time it really freaked my mother out because I had just eaten red jello and she thought it was blood...oh, funny memories). When I had appendicitis, I think I was just nauseous. Luckily, I seem to be able to handle them now.
The worst part of the surgery recovery was by far the drains I had in for THREE weeks. They were awful - basically two bulbs of my bodily fluid (plasma mostly) hanging three feet from the bottom of my boobs. They had to be emptied three times a day (thank goodness for my lovely husband for helping with this), which was obnoxious and gross. And they kept getting caught on things and tugging, which hurts! The amount of fluid that the drains put out has to get down to a certain level before they can be removed, and I seriously considered fudging the numbers to get them out. But with my luck, I would end up with some terrible complication if I did that, so I didn't. The day they finally came out was so great, though!
So I now have fake boobs, which is a little weird, but I'm getting used to it. In some ways they are an improvement over my old boobs. 1. They are much smaller and perkier and 2. As my surgeon keeps saying, they aren't trying to kill me. Ironically, I have always thought in my adult life that at least I would never need implants since I have never been small chested. So much for that. Another nice thing, though, is the bras I bought after my surgery. They have no underwires (this is the first time since I was about 14 that I have had a bra without an underwire), and they have the tiniest straps. Of course, instead of nipples I now have incision scars across both boobs, but I wasn't planning to do any topless modeling, so I suppose it doesn't really matter.
On August 3, about 3.5 weeks after my surgery, I went back to work. Then, on August 12 (conveniently, right in the middle of RA training), I started radiation treatments. Radiation is everyday, so I've had 22 radiation treatments so far and I have 8 to go. My last day of radiation will be September 23.
Radiation has been a breeze compared to chemo. The only pain in the butt is the fact that it is everyday, so it got old about a week into it. Also, it really does irritate the skin. During the first few weeks, my skin was fine, but over the past couple of weeks, my skin has gone from pink to red to purple in places and now black on the incision under my arm. It also has started to hurt a little, but compared to chemo, it's basically nothing.
Oh, and my hair has started growing back. I have eyelashes and eyebrows again, which is nice. The hair on my head is almost long enough to be a "hairstyle," but it will still be a while before I actually need a haircut. I might have to start using shampoo again soon, though! Unfortunately, this does mean that I have to shave my legs again, but I guess it's worth not feeling and looking like absolute crap.
So hopefully in 10 days I will be cancer-free and finished with treatment! After this, I just have to have my port removed and a small procedure to remove excess tissue under my arms leftover from the surgery. I will meet with both the breast surgeon and medical oncologist every six months for the rest of my life. And I will wish and hope that the cancer never returns.
Sunday, September 13, 2015
Tuesday, July 7, 2015
Surgery is imminent
Well, first off I feel like I should acknowledge the fact that it's been a ridiculously long time since my last post, so let me catch you up...
Almost three months ago, I had just had my first Taxol treatment and thought it was going to be cake! Well, that was wrong. Very wrong. Taxol was very different than AC (Adriamycin and Cytoxan), but really just as bad. Instead of feeling exhausted and generally awful, I was a little tired and had horrible muscle pain, mostly in my legs. It was painful. Really, really painful. But at least I didn't have any nausea, so there is that. And the few hairs I had left all fell out, including my eyebrows and eyelashes. So for about the last two months, I've officially looked like a cancer patient. Which I guess makes sense since that's what I am.
I had my last chemo treatment on May 27, and finally started feeling better in mid- to late-June. The bottom line is that chemo is awful. That's probably not a surprise to anyone, but actually living through it is very different from just intellectually knowing that it will be awful. It was four months of my life basically feeling completely horrible about 90% of the time. But it's over now, and according to my oncologist, I should feel back to the way I did before chemo by the end of September. That's right, it takes about four months to completely recover. Of course, he also said that my hair would be about a half inch long by now, and it's only about half a millimeter long, so I'm not sure if I should believe him or not.
So enough about chemo. Aris, Calla, and I have managed to have some good times and make some good memories despite all the crap during the past three months. We had a nice picnic on Skyline Drive on Memorial Day, went to Virginia Beach for a long weekend a few weeks ago, and met my mom, stepfather, aunt, and uncle for a Fourth of July picnic. Calla seems to be doing well despite all of this, thank goodness.
So, the real reason I decided I should break my radio silence and finally write a new blog post is because tomorrow is the big surgery day. I have decided to have a bilateral mastectomy with reconstruction. Technically, it's a modified radical mastectomy on the left side and a total mastectomy on the right side. One surgeon does that part, and then the plastic surgeon puts in implants. Oh, and they will be removing my nipples. So that will take some getting used to. Each part of the surgery is supposed to take 2.5 hours, so it will be about 5 hours for the whole surgery. My surgery was originally scheduled for 7:30AM tomorrow, but I got a call tonight that it was pushed back to 11:30AM. I'm supposed to be in the hospital for two nights. Then when I come home, I will have drains coming out of my boobs. Fun stuff! My wonderful husband gets to empty the drains for me.
I will probably be out of work for about four weeks, which means that I should get back just in time for RA training. So I've been trying to get a summer's worth of work done in a month and a half. I think I accomplished this, but we will see. Once again, I am so, so appreciative for my amazing staff. We've been short-staffed since February, and they have been so amazing this entire time!
Also, thank you to my husband, mom, sister, in-laws, co-workers, family, friends, and everyone else who has wished me well and helped me so much during this whole thing. If I'm being honest, I am really dreading this surgery. Part of me just wants to have it over with, but I know it's going to SUCK. Oh well, just the surgery and then probably six weeks of radiation to go, and then hopefully I will be cancer-free!
Almost three months ago, I had just had my first Taxol treatment and thought it was going to be cake! Well, that was wrong. Very wrong. Taxol was very different than AC (Adriamycin and Cytoxan), but really just as bad. Instead of feeling exhausted and generally awful, I was a little tired and had horrible muscle pain, mostly in my legs. It was painful. Really, really painful. But at least I didn't have any nausea, so there is that. And the few hairs I had left all fell out, including my eyebrows and eyelashes. So for about the last two months, I've officially looked like a cancer patient. Which I guess makes sense since that's what I am.
I had my last chemo treatment on May 27, and finally started feeling better in mid- to late-June. The bottom line is that chemo is awful. That's probably not a surprise to anyone, but actually living through it is very different from just intellectually knowing that it will be awful. It was four months of my life basically feeling completely horrible about 90% of the time. But it's over now, and according to my oncologist, I should feel back to the way I did before chemo by the end of September. That's right, it takes about four months to completely recover. Of course, he also said that my hair would be about a half inch long by now, and it's only about half a millimeter long, so I'm not sure if I should believe him or not.
So enough about chemo. Aris, Calla, and I have managed to have some good times and make some good memories despite all the crap during the past three months. We had a nice picnic on Skyline Drive on Memorial Day, went to Virginia Beach for a long weekend a few weeks ago, and met my mom, stepfather, aunt, and uncle for a Fourth of July picnic. Calla seems to be doing well despite all of this, thank goodness.
So, the real reason I decided I should break my radio silence and finally write a new blog post is because tomorrow is the big surgery day. I have decided to have a bilateral mastectomy with reconstruction. Technically, it's a modified radical mastectomy on the left side and a total mastectomy on the right side. One surgeon does that part, and then the plastic surgeon puts in implants. Oh, and they will be removing my nipples. So that will take some getting used to. Each part of the surgery is supposed to take 2.5 hours, so it will be about 5 hours for the whole surgery. My surgery was originally scheduled for 7:30AM tomorrow, but I got a call tonight that it was pushed back to 11:30AM. I'm supposed to be in the hospital for two nights. Then when I come home, I will have drains coming out of my boobs. Fun stuff! My wonderful husband gets to empty the drains for me.
I will probably be out of work for about four weeks, which means that I should get back just in time for RA training. So I've been trying to get a summer's worth of work done in a month and a half. I think I accomplished this, but we will see. Once again, I am so, so appreciative for my amazing staff. We've been short-staffed since February, and they have been so amazing this entire time!
Also, thank you to my husband, mom, sister, in-laws, co-workers, family, friends, and everyone else who has wished me well and helped me so much during this whole thing. If I'm being honest, I am really dreading this surgery. Part of me just wants to have it over with, but I know it's going to SUCK. Oh well, just the surgery and then probably six weeks of radiation to go, and then hopefully I will be cancer-free!
Thursday, April 16, 2015
Just a few small problems
Well, a lot has happened since my last blog a month ago, but I'm going to try to keep this as short as possible. First of all, on the same afternoon of my last blog, March 15, I started running a fever of 100.6. While on chemo if you run a fever over 100.5, you're supposed to call the oncologist on call. So I did, and she she told me to go to the ER. Ugh. So I called one of my amazing co-workers, who was able to babysit on a moment's notice (thank you, JJ!). I was at the ER for over SEVEN hours that night! They did blood work, a urinalysis, a chest X-ray, and found...nothing. No reason for the fever. So after the SEVEN hours, they sent me home with an antibiotic for no reason except that's apparently what they do when your're on chemo and have a fever for no reason.
I still had chemo that Wednesday, March 18, which was my last (and worst) AC treatment. I felt really crappy that weekend and for most of the next week. Luckily for me, room selection at work also started the next week. For those of you who haven't been lucky enough (that's sarcasm, my friends) to experience room selection in college housing, let me boil it down for you with a few quick numbers. 275 spaces in apartments, over 400 students who want to live in the apartments. What does this equal? About 75 students emailing me, the Dean of Students, and the President of the College to express their feelings that "the system is broken," "they got screwed by housing once again," and "they shouldn't be punished because the housing staff screwed things up." Also, 75 parents of students calling to say the same thing and DEMAND that their precious baby get what they want. Newsflash: just because you don't get what you want doesn't mean that someone else screwed up. (Okay, full disclosure, I did screw up two assignments, but they still got into the apartments just not the apartment complex they wanted. And we did have a few issues with our software, but no one actually got screwed over.) Sometimes you just don't get what you want. That's part of life. Why can't these spoiled, entitled students understand that? I have to say, though, that I work with the best, most supportive staff ever. Without them, I don't think I could have survived this.
So about the same time as the shit hit the fan at work, I started getting really bad mouth sores, which is a common side effect of the chemo. At first, it wasn't too bad, so Aris got me some over-the-counter mouthwash and stuff for mouth sores. But by that Friday, March 27, it was so bad that I not only couldn't really eat, but I was in so much pain that I could hardly swallow or talk. I finally called the oncologist on call (who ended up being my regular oncologist). He thought the mouth sores might actually be thrush, and prescribed me some meds for that. Apparently the antibiotics I was on combined with the suppressed immune system from the chemo caused the thrush. And just for the record, thrush SUCKS! The only thing I could really eat for a while was canned peaches...thank god for canned peaches!
The very next day, Saturday March 28, I started running a fever again, this time it was 101.9. So once again I called the oncologist on call (even though I didn't want to). Basically, I told him that I really didn't want to go to the ER especially since the last time I went, they couldn't figure out what was wrong anyway. Well, apparently going to the ER was non-negotiable. He said that it was "a medical emergency," and I was risking kidney failure or sepsis if I didn't go. So fine, I got one of our amazing students (thank you, Abby!) to babysit, again, at a moment's notice. And off Aris and I went again. This time I was only there for six hours. They did the same tests as last time, plus an EKG for some reason. And again, they found...nothing. The only different between this ER visit and the last ER visit was that my blood counts were really low. I discussed the effect that stress at work could be having on my health with the ER doctor, and he said that while stress wouldn't cause a fever, it could cause low blood counts. Super. Due to the low blood counts combined with the fever, they considered admitting me to the hospital this time, but luckily they didn't. They did prescribe an antibiotic again. Oh, and the ER doctor called my oncologist, who said they "they weren't going to mess around anymore" and if I got another fever, he was just going to admit me straight to the hospital. So that was awesome.
Fast forward two nights, and I have ANOTHER fever. This one was 102. I really had no desire to go back to the hospital, so I almost didn't call the oncologist. But then I started throwing up...a lot. So Aris called the oncologist. This time I thought for sure they were going to say that I was going to be admitted. Instead, the oncologist (who I had never seen before) said that it wasn't necessary for me to go to the hospital since I was seeing my regular oncologist in a few days, and just to call if I got worse. Well, that sounded good to me!
Then on Tuesday, I started having problems breathing. I couldn't take a deep breath without tightness in my chest and pain and any exertion made me really short of breath. By Wednesday morning, I felt AWFUL. I was nauseous, tired, and my breathing was worse. So, the bottom line is that there was no chemo on April 1. Instead I got sent for a chest CT. I found out that they were looking for a blood clot in my lungs. Well, that's scary. Luckily, as soon as I got back to the oncologist's office, he told me that it was not a blood clot. So that was a relief. But there was an abnormality on the CT scan, so I got to meet with a pulmonologist the next day and have a bronchoscopy! A bronchoscopy, for those not familiar, is a lovely procedure where they stick a tube down your throat, squirt water into your lung and then take a "sample" to test for infection. The squirting of the water into my lung felt a little like I was drowning, so that was super fun.
By the next Wednesday, my breathing wasn't totally back to normal, but it was much better. Since I had rearranged my schedule thinking that I would have chemo that week, I was hoping to actually have chemo. But no, since I wasn't totally better and my oncologist still didn't know what exactly the problem was, there was no chemo on April 8 either. The good news is that with no chemo for over three weeks, I felt pretty darn good...almost "normal." Last weekend we actually got to enjoy the beautiful weather on both Saturday and Sunday.
On a side note, my awesome sister had a fundraiser for me on Saturday, with a whole bunch of different vendors giving their proceeds to me for my cancer treatment. So a big thank you to her, my mother, all the vendors, and everyone who attended. I really appreciate the support!
This Tuesday, I had a follow-up appointment with the pulmonologist and finally found out what my actual diagnosis is. I have PCP! And as I keep saying, I'm not ON PCP, I HAVE PCP. What is PCP, you ask? Well, it's a lovely form of pneumonia that people with a compromised immune system get. It's common in people with HIV, and people with chemo get it sometimes. Lucky me! Since by this time it had been almost four weeks since my last chemo treatment, my body did what a "normal" body would do, and fought off the PCP. So my breathing was back to normal. However, once I started chemo again, the PCP would likely come back. So I am on meds until the end of chemo to keep the PCP away (hopefully).
I was finally able to have chemo yesterday, my first Taxol treatment. And so far, I have to say that Taxol is awesome! By this time after the AC, I felt queasy, exhausted, and just plain icky. As of right now (knock on wood), I feel...fine, almost normal still. I feel like I didn't have chemo yesterday. Yay! I hope this continues!
I still had chemo that Wednesday, March 18, which was my last (and worst) AC treatment. I felt really crappy that weekend and for most of the next week. Luckily for me, room selection at work also started the next week. For those of you who haven't been lucky enough (that's sarcasm, my friends) to experience room selection in college housing, let me boil it down for you with a few quick numbers. 275 spaces in apartments, over 400 students who want to live in the apartments. What does this equal? About 75 students emailing me, the Dean of Students, and the President of the College to express their feelings that "the system is broken," "they got screwed by housing once again," and "they shouldn't be punished because the housing staff screwed things up." Also, 75 parents of students calling to say the same thing and DEMAND that their precious baby get what they want. Newsflash: just because you don't get what you want doesn't mean that someone else screwed up. (Okay, full disclosure, I did screw up two assignments, but they still got into the apartments just not the apartment complex they wanted. And we did have a few issues with our software, but no one actually got screwed over.) Sometimes you just don't get what you want. That's part of life. Why can't these spoiled, entitled students understand that? I have to say, though, that I work with the best, most supportive staff ever. Without them, I don't think I could have survived this.
So about the same time as the shit hit the fan at work, I started getting really bad mouth sores, which is a common side effect of the chemo. At first, it wasn't too bad, so Aris got me some over-the-counter mouthwash and stuff for mouth sores. But by that Friday, March 27, it was so bad that I not only couldn't really eat, but I was in so much pain that I could hardly swallow or talk. I finally called the oncologist on call (who ended up being my regular oncologist). He thought the mouth sores might actually be thrush, and prescribed me some meds for that. Apparently the antibiotics I was on combined with the suppressed immune system from the chemo caused the thrush. And just for the record, thrush SUCKS! The only thing I could really eat for a while was canned peaches...thank god for canned peaches!
The very next day, Saturday March 28, I started running a fever again, this time it was 101.9. So once again I called the oncologist on call (even though I didn't want to). Basically, I told him that I really didn't want to go to the ER especially since the last time I went, they couldn't figure out what was wrong anyway. Well, apparently going to the ER was non-negotiable. He said that it was "a medical emergency," and I was risking kidney failure or sepsis if I didn't go. So fine, I got one of our amazing students (thank you, Abby!) to babysit, again, at a moment's notice. And off Aris and I went again. This time I was only there for six hours. They did the same tests as last time, plus an EKG for some reason. And again, they found...nothing. The only different between this ER visit and the last ER visit was that my blood counts were really low. I discussed the effect that stress at work could be having on my health with the ER doctor, and he said that while stress wouldn't cause a fever, it could cause low blood counts. Super. Due to the low blood counts combined with the fever, they considered admitting me to the hospital this time, but luckily they didn't. They did prescribe an antibiotic again. Oh, and the ER doctor called my oncologist, who said they "they weren't going to mess around anymore" and if I got another fever, he was just going to admit me straight to the hospital. So that was awesome.
Fast forward two nights, and I have ANOTHER fever. This one was 102. I really had no desire to go back to the hospital, so I almost didn't call the oncologist. But then I started throwing up...a lot. So Aris called the oncologist. This time I thought for sure they were going to say that I was going to be admitted. Instead, the oncologist (who I had never seen before) said that it wasn't necessary for me to go to the hospital since I was seeing my regular oncologist in a few days, and just to call if I got worse. Well, that sounded good to me!
Then on Tuesday, I started having problems breathing. I couldn't take a deep breath without tightness in my chest and pain and any exertion made me really short of breath. By Wednesday morning, I felt AWFUL. I was nauseous, tired, and my breathing was worse. So, the bottom line is that there was no chemo on April 1. Instead I got sent for a chest CT. I found out that they were looking for a blood clot in my lungs. Well, that's scary. Luckily, as soon as I got back to the oncologist's office, he told me that it was not a blood clot. So that was a relief. But there was an abnormality on the CT scan, so I got to meet with a pulmonologist the next day and have a bronchoscopy! A bronchoscopy, for those not familiar, is a lovely procedure where they stick a tube down your throat, squirt water into your lung and then take a "sample" to test for infection. The squirting of the water into my lung felt a little like I was drowning, so that was super fun.
By the next Wednesday, my breathing wasn't totally back to normal, but it was much better. Since I had rearranged my schedule thinking that I would have chemo that week, I was hoping to actually have chemo. But no, since I wasn't totally better and my oncologist still didn't know what exactly the problem was, there was no chemo on April 8 either. The good news is that with no chemo for over three weeks, I felt pretty darn good...almost "normal." Last weekend we actually got to enjoy the beautiful weather on both Saturday and Sunday.
On a side note, my awesome sister had a fundraiser for me on Saturday, with a whole bunch of different vendors giving their proceeds to me for my cancer treatment. So a big thank you to her, my mother, all the vendors, and everyone who attended. I really appreciate the support!
This Tuesday, I had a follow-up appointment with the pulmonologist and finally found out what my actual diagnosis is. I have PCP! And as I keep saying, I'm not ON PCP, I HAVE PCP. What is PCP, you ask? Well, it's a lovely form of pneumonia that people with a compromised immune system get. It's common in people with HIV, and people with chemo get it sometimes. Lucky me! Since by this time it had been almost four weeks since my last chemo treatment, my body did what a "normal" body would do, and fought off the PCP. So my breathing was back to normal. However, once I started chemo again, the PCP would likely come back. So I am on meds until the end of chemo to keep the PCP away (hopefully).
I was finally able to have chemo yesterday, my first Taxol treatment. And so far, I have to say that Taxol is awesome! By this time after the AC, I felt queasy, exhausted, and just plain icky. As of right now (knock on wood), I feel...fine, almost normal still. I feel like I didn't have chemo yesterday. Yay! I hope this continues!
Sunday, March 15, 2015
Ups and downs
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.
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 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.
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