Hello,
When I found out I had Hodgkin's earlier this summer, I met a lovely girl who had gone through the same thing two years before me through her blog. I emailed her, and she was great at answering my questions about treatment, diet, hair loss, and everything else I could think of. I'm now extending the same invitation for any Hodgkin's fighter (or any cancer really, but I will be most helpful for Hodgkin's patients). It's always better to know than to wonder!
If you are a cancer fighter or a caregiver with questions, feel free to email me them. I'll do my best to answer them, and I promise to respond as quickly as possible.
Best wishes,
Maggie
Tuesday, July 28, 2015
Thursday, July 23, 2015
The One with the Different Chemo Drugs
2 down...6 to go! Until the next PET scan that is, but hey, at least we have a check point.
Today I'm going to explain the four different drugs of my specific chemo cocktail and what they each do to me. But before that, some general Maggie updates. Summer is very quickly losing its taste for me (it always does in late July) and I am eagerly anticipating the day when I can start packing up for school. At this point, I don't see any reason to miss this semester, especially since SNC has provided me a private room and bathroom. Thanks St. Norbert College :) I am also in a winter/holidays state of mind, so today my work has consisted of listening to Christmas music while I play with spreadsheeets.
Last week's infusion of chemo went a lot better than the first one. We opted not to have the drug that really knocked me out, an anti-nausea drug, and I'm glad we did. I had plenty of other things to keep my stomach happy. I did get tired toward the end and felt really jittery from the steroid.
The infusion goes like this: I have four different chemo drugs, and each has to be administered differently. The four drugs are: adriamycin (doxorubicin), bleomycin, vinblastine, and dacarbazine (ABVD). Usually they go in that order, but because I had a minor reaction to bleo the first time, they ran that one first.
Bleo is clear and comes in a drip. They started me off with a test dose and then gave the full dose, which took a total 20 minutes. It can really mess up your lungs, hence my pulmonary test way back in June. If I had had problems with my lungs already, I probably wouldn't be on this regimen of chemo. After that was adriamycin, which is a bright red drug that causes the hair loss and is administered in a syringe that my nurse slowly pushes into my port. Adrimycin is used in a lot of cancers, and in addition to hair loss also can cause heart damage - so doctors monitor regularly for that.
Vinblastine follows, and while that's also a drip, it's a really fast one. It's clear like Bleo, but since it rarely causes any reactions the nurses don't have to do a test dose. Apparently it can cause nerve damage, but so far I haven't noticed anything. Dacarbazine is the last one of the day, and it takes FOREVER. I think this is the one that makes me tired. It takes a half hour, and at this point in the day I am just not having it. It also causes the most nausea, but with so many anti-nausea drugs most Hodgkin's patients don't have problems with nausea.
So those are the four chemo drugs. Let me know if you have any questions!
Current symptoms, side effects, and general complaints: Nothing, except my cold sore won't go away even with medicine. Might indicate that my body's having a harder time fighting infection.
Today I'm going to explain the four different drugs of my specific chemo cocktail and what they each do to me. But before that, some general Maggie updates. Summer is very quickly losing its taste for me (it always does in late July) and I am eagerly anticipating the day when I can start packing up for school. At this point, I don't see any reason to miss this semester, especially since SNC has provided me a private room and bathroom. Thanks St. Norbert College :) I am also in a winter/holidays state of mind, so today my work has consisted of listening to Christmas music while I play with spreadsheeets.
Last week's infusion of chemo went a lot better than the first one. We opted not to have the drug that really knocked me out, an anti-nausea drug, and I'm glad we did. I had plenty of other things to keep my stomach happy. I did get tired toward the end and felt really jittery from the steroid.
The infusion goes like this: I have four different chemo drugs, and each has to be administered differently. The four drugs are: adriamycin (doxorubicin), bleomycin, vinblastine, and dacarbazine (ABVD). Usually they go in that order, but because I had a minor reaction to bleo the first time, they ran that one first.
Bleo is clear and comes in a drip. They started me off with a test dose and then gave the full dose, which took a total 20 minutes. It can really mess up your lungs, hence my pulmonary test way back in June. If I had had problems with my lungs already, I probably wouldn't be on this regimen of chemo. After that was adriamycin, which is a bright red drug that causes the hair loss and is administered in a syringe that my nurse slowly pushes into my port. Adrimycin is used in a lot of cancers, and in addition to hair loss also can cause heart damage - so doctors monitor regularly for that.
Vinblastine follows, and while that's also a drip, it's a really fast one. It's clear like Bleo, but since it rarely causes any reactions the nurses don't have to do a test dose. Apparently it can cause nerve damage, but so far I haven't noticed anything. Dacarbazine is the last one of the day, and it takes FOREVER. I think this is the one that makes me tired. It takes a half hour, and at this point in the day I am just not having it. It also causes the most nausea, but with so many anti-nausea drugs most Hodgkin's patients don't have problems with nausea.
So those are the four chemo drugs. Let me know if you have any questions!
Current symptoms, side effects, and general complaints: Nothing, except my cold sore won't go away even with medicine. Might indicate that my body's having a harder time fighting infection.
Monday, July 13, 2015
The One Where I Review My Sister's Keeper and Other Stuff
Turns out, when you have cancer, a lot of what you do is waiting around hoping that medicine (poison) is working inside you. As of yet, I haven't seen many indications that it's doing its job. I still have my hair - though I'm getting used to wearing scarves and hats so it's not a huge jump. I have to admit - I have fantasized about getting body crayons and letting my friends draw on my head (I think this could be a lot of fun :)) - but that'll have to wait until after my hair follicles stop hurting.
I picked up Jodi Picoult's My Sister's Keeper not because I have cancer so suddenly it's relevant, but because I'm working to complete The Rory Gilmore Reading Challenge. So far this summer I've read The Art of War, Metamorphosis, The Jungle, and Water for Elephants. Including all the books I read this past year and all through high school, I'm at about 50 on this list. But this weekend I was working through My Sister's Keeper.
I'm glad I read it now and not in 8th grade when all my friends told me I needed to. It's kind of cool to know all the medical terminology like "bone marrow aspiration" which just makes my pelvis hurt thinking about it. At first the amount of narrators bothered me, but once you begin to understand each person's voice it gets easier. Much like another favorite: The Guernsey Literary and Potato Peel Pie Society.
All in all, I would recommend the book, but it makes it a little more real if this has been an experience you've had before. It's a lot more realistic than The Fault in Our Stars, which after comparing that to real life, isn't as accurate as they make it seem. Two kids with cancer just would not be able to walk that much. I'm sorry. And there was not nearly enough hand sanitizer. Maybe that was supposed to be symbolic in that Hazel didn't want to take precautions to save her life anymore? (#sarcasm)
So, an update on my life. We are reaching the end of the first 14 day cycle and will be starting all over again on Wednesday. Tuesday I go in for a short appointment to get blood taken for labs, which will determine if I'm ready for chemo on Wednesday. Then on Wednesday we're going in for my second round of drugs. My next post will be on the different drugs themselves and how each effects me.
Current symptoms, side effects, and complaints: Nothing :)
Prayers to my old swim coach Mike Slagle who suffered a heart attack last night!
I picked up Jodi Picoult's My Sister's Keeper not because I have cancer so suddenly it's relevant, but because I'm working to complete The Rory Gilmore Reading Challenge. So far this summer I've read The Art of War, Metamorphosis, The Jungle, and Water for Elephants. Including all the books I read this past year and all through high school, I'm at about 50 on this list. But this weekend I was working through My Sister's Keeper.
I'm glad I read it now and not in 8th grade when all my friends told me I needed to. It's kind of cool to know all the medical terminology like "bone marrow aspiration" which just makes my pelvis hurt thinking about it. At first the amount of narrators bothered me, but once you begin to understand each person's voice it gets easier. Much like another favorite: The Guernsey Literary and Potato Peel Pie Society.
All in all, I would recommend the book, but it makes it a little more real if this has been an experience you've had before. It's a lot more realistic than The Fault in Our Stars, which after comparing that to real life, isn't as accurate as they make it seem. Two kids with cancer just would not be able to walk that much. I'm sorry. And there was not nearly enough hand sanitizer. Maybe that was supposed to be symbolic in that Hazel didn't want to take precautions to save her life anymore? (#sarcasm)
So, an update on my life. We are reaching the end of the first 14 day cycle and will be starting all over again on Wednesday. Tuesday I go in for a short appointment to get blood taken for labs, which will determine if I'm ready for chemo on Wednesday. Then on Wednesday we're going in for my second round of drugs. My next post will be on the different drugs themselves and how each effects me.
Current symptoms, side effects, and complaints: Nothing :)
Prayers to my old swim coach Mike Slagle who suffered a heart attack last night!
Monday, July 6, 2015
The One with Hardly Any Side Effects
Woo! One round of chemo done, only....who knows how many more (at least 7, at this point). But let's not focus on that. This whole weekend I've been up and about, eating pretty regularly, botching knitting projects (I do not want to talk about it), and generally surprising everyone with how I'm feeling.
When I came home after chemo on Wednesday, I slept a ton. But apparently this was good because I woke up the next day feeling pretty okay, besides some fatigue. Since then, I haven't gotten sick or had any of the really typical chemo side effects most people report. I have a little tingling in my thumbs, a little dry skin, some blurry long distance vision (good-bye driving for now), and then just being tired.
When my mom and I went in for side effects education two weeks ago, my wonderful nurse Katie ran through a list of what seemed like 1,000,000,000 side effects that could happen including, but not limited to: nausea, poor appetite, constipation, headaches, organ failure, depression, yellowing of the eyes, and hair loss. But like I said, I haven't experienced many of these at all. I was especially surprised that I've had no nausea since I had such a bad reaction to the Emend during treatment. But after two days of Zofran (another anti-nausea drug for at home), I'm not taking any medication.
The fatigue can be really tough, but there are several things that I've been doing that seem to help combat it.
1). Yoga. I've always loved doing yoga, but already I can feel that my muscles are weakening, and I'm not as flexible as I used to be. However, doing two 15-minute sessions of yoga (once in the morning and once at night) help a lot with balance. Fatigue can make it hard to stand up, go up and down stairs, and sit on stools, but doing poses like tree and the different warrior variations help a lot.
2). Walking. You may see me walking around town a lot, either in a large block or down to the bookstore and back. I try to walk at least once a day. Like the yoga, this keeps my blood moving and helps get the good cells in my body to work while the cancerous ones are dying.
3). FLUIDS. I have been drinking so much. Tap water no longer tastes good, but if I have a lot of ice in it, water has been fine for me. I also have been drinking that bottled "Peace Tea" which has a strong flavor to get rid of the metallic taste in my mouth. All the fluids keeps things moving. Dehydration is also the main reason most cancer patients end up in the hospital, which I am itching to avoid. Unfortunately coffee doesn't count toward my daily fluid intake, but so far it hasn't been that hard to drink enough. Fluids also help in keeping skin and lips moist (another side effect).
If I think of anything else, I'll add to this list. But so far, we are good! Thanks as always for the support and prayers :)
Current symptoms, side effects, and complaints: fatigue, tingling in thumbs, blurry long distance vision, and metallic taste in my mouth, dry hands and lips
When I came home after chemo on Wednesday, I slept a ton. But apparently this was good because I woke up the next day feeling pretty okay, besides some fatigue. Since then, I haven't gotten sick or had any of the really typical chemo side effects most people report. I have a little tingling in my thumbs, a little dry skin, some blurry long distance vision (good-bye driving for now), and then just being tired.
When my mom and I went in for side effects education two weeks ago, my wonderful nurse Katie ran through a list of what seemed like 1,000,000,000 side effects that could happen including, but not limited to: nausea, poor appetite, constipation, headaches, organ failure, depression, yellowing of the eyes, and hair loss. But like I said, I haven't experienced many of these at all. I was especially surprised that I've had no nausea since I had such a bad reaction to the Emend during treatment. But after two days of Zofran (another anti-nausea drug for at home), I'm not taking any medication.
The fatigue can be really tough, but there are several things that I've been doing that seem to help combat it.
1). Yoga. I've always loved doing yoga, but already I can feel that my muscles are weakening, and I'm not as flexible as I used to be. However, doing two 15-minute sessions of yoga (once in the morning and once at night) help a lot with balance. Fatigue can make it hard to stand up, go up and down stairs, and sit on stools, but doing poses like tree and the different warrior variations help a lot.
Not me, but look at how happy she is doing yoga!
2). Walking. You may see me walking around town a lot, either in a large block or down to the bookstore and back. I try to walk at least once a day. Like the yoga, this keeps my blood moving and helps get the good cells in my body to work while the cancerous ones are dying.
3). FLUIDS. I have been drinking so much. Tap water no longer tastes good, but if I have a lot of ice in it, water has been fine for me. I also have been drinking that bottled "Peace Tea" which has a strong flavor to get rid of the metallic taste in my mouth. All the fluids keeps things moving. Dehydration is also the main reason most cancer patients end up in the hospital, which I am itching to avoid. Unfortunately coffee doesn't count toward my daily fluid intake, but so far it hasn't been that hard to drink enough. Fluids also help in keeping skin and lips moist (another side effect).
If I think of anything else, I'll add to this list. But so far, we are good! Thanks as always for the support and prayers :)
Current symptoms, side effects, and complaints: fatigue, tingling in thumbs, blurry long distance vision, and metallic taste in my mouth, dry hands and lips
Thursday, July 2, 2015
The One With Chemotherapy
1 down! Yesterday I had my first treatment of chemotherapy. Overall, it hasn't been that bad. I haven't been nauseous, but I have been pretty tired.
There was only one scary moment during chemo, but it was fixed right away. They were going to give me an anti-nausea drug called Emend, but I had bad reaction to it. My chest tightened up and for a few minutes it was really hard to breathe. Thankfully my nurses and my oncologist were very close by and with the help of Benadryl, I was just fine. And I was assured that I was never going to get that drug again; they had several anti-nausea drugs to pick from.
After that, the Benadryl made me pretty sleepy. I was awake for the first infusion of chemo, but slept through the next two. My last drug took only 5 minutes to get injected, and then we were free to go. I was a little shaky on my feet, but I made it to the car and slept on the way home. We got home around 3:00, and I went straight to bed. Dad woke me up around 6:30 to eat some chicken soup (it's very important to eat and drink after chemo), but I could only a few bites before almost falling back asleep. Then I fell back asleep until this morning (minus one bathroom break around 2:30).
I haven't gotten sick, and I really don't feel that nauseous, which is fantastic. I am tired, but doing little spurts of yoga and grazing instead of eating big meals seems to help. I've watched two movies (Philomena and The Butler) and started a knitting project. I also don't seem to have "chemo brain" yet. I would say I'm pretty lucky.
Thank you to everyone who has left comments, sent cards, or kept me in their prayers. As always, they mean so much. And thanks for liking the new haircut pictures on the Facebook page! I'm excited to see which one wins the page's profile picture. I don't think I'm ever going to go back to long hair after this :)
Current symptoms, side effects, and complaints: only a little tired
There was only one scary moment during chemo, but it was fixed right away. They were going to give me an anti-nausea drug called Emend, but I had bad reaction to it. My chest tightened up and for a few minutes it was really hard to breathe. Thankfully my nurses and my oncologist were very close by and with the help of Benadryl, I was just fine. And I was assured that I was never going to get that drug again; they had several anti-nausea drugs to pick from.
After that, the Benadryl made me pretty sleepy. I was awake for the first infusion of chemo, but slept through the next two. My last drug took only 5 minutes to get injected, and then we were free to go. I was a little shaky on my feet, but I made it to the car and slept on the way home. We got home around 3:00, and I went straight to bed. Dad woke me up around 6:30 to eat some chicken soup (it's very important to eat and drink after chemo), but I could only a few bites before almost falling back asleep. Then I fell back asleep until this morning (minus one bathroom break around 2:30).
I haven't gotten sick, and I really don't feel that nauseous, which is fantastic. I am tired, but doing little spurts of yoga and grazing instead of eating big meals seems to help. I've watched two movies (Philomena and The Butler) and started a knitting project. I also don't seem to have "chemo brain" yet. I would say I'm pretty lucky.
Thank you to everyone who has left comments, sent cards, or kept me in their prayers. As always, they mean so much. And thanks for liking the new haircut pictures on the Facebook page! I'm excited to see which one wins the page's profile picture. I don't think I'm ever going to go back to long hair after this :)
Current symptoms, side effects, and complaints: only a little tired
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