I am posting this article about chemo brain because hopefully it will help explain why my blog written yesterday, September 6th, has much of the same content as my blog written on August 3rd. Ooops! My bad! I considered just deleting the redundancy I wrote yesterday, but then forgot to do it. Chemo brain. I think I'll just leave it as is. It may help someone recently diagnosed with cancer who is reading my blog.
Chemo Brain
For many years cancer survivors have worried about, joked about, and been frustrated with the mental cloudiness they notice before, during, and after chemotherapy. We don't know its exact cause, but this mental fog is commonly called chemo brain. Patients have noticed chemo brain for some time, but only recently have studies been done that could start to explain it.
Research has shown that some cancer drugs can, indeed, cause changes in the brain. Imaging tests have shown that after chemotherapy, some patients have smaller brain size in the parts of the brain that deal with memory, planning, putting thoughts into action, monitoring thought processes and behavior, and inhibition.
Some people report having these symptoms even before they start treatment. Others report it even though they have not had chemotherapy. Still others notice the problem when they are getting hormonal treatments. So the term "chemo brain" may not be completely accurate, but it is the name that most people call it right now.
Though the brain usually recovers over time, the sometimes vague yet distressing mental changes cancer patients notice are real, not imagined. These changes can make people unable to go back to their school, work, or social activities, or make it so that it takes a lot of mental effort to do so. They affect daily activities and need to be researched further.
What is chemo brain?
Here are just a few examples of what patients call chemo brain:
•forgetting things that they usually have no trouble recalling -- memory lapses
•trouble concentrating -- they can't focus on what they're doing
•trouble remembering details like names, dates, and sometimes larger events
•trouble multi-tasking, like answering the phone while cooking, without losing track of one of them -- less ability to do more than one thing at a time
•taking longer to finish things -- slower thinking and processing
•trouble remembering common words -- can't finish a sentence because you can't find the right words
For some people these effects happen quickly and only last a short time, while others have mild, long-term mental changes. Usually the changes that patients notice are very subtle, and others around them may not even notice any changes at all. Still, the people who have problems are well aware of the differences in their thinking. Many people do not tell their healthcare team about this problem until it affects their everyday life.
Doctors and researchers call chemo brain "mild cognitive impairment" and define it as being unable to remember certain things and having trouble finishing certain tasks or learning new skills.
Is chemo brain real?
Yes, chemo brain is real, but its cause is unknown. How often it happens, what may trigger it, or what can be done to prevent it, is also unknown.
Pictures of the brain have shown changes in the brain activity of breast cancer survivors treated with chemo when compared with those who were not treated with chemo. These changes were still seen on scans 5 to 10 years after treatment stopped. Chemo brain could be caused by any one or any combination of the following factors:
•the cancer itself
•chemo drugs
•other drugs used as part of treatment (such as anti-nausea or pain medicines)
•patient age
•stress
•low blood counts
•sleep problems
•infection
•depression
•tiredness (fatigue)
•hormone changes
•anxiety
What is known is that chemo brain is a real problem that affects both men and women. Even though chemo does not seem to be the only cause, studies have suggested that up to 70% of people who get chemo will notice symptoms of chemo brain.
What can I do to manage chemo brain?
Day-to-day coping
Experts have been studying memory for a long time. There are many resources to help you sharpen your mental abilities and manage the problems that may come with chemo brain. Some things that you can do are:
•Use a detailed daily planner. Keeping everything in one place makes it easier to find the reminders you may need. Serious planner users keep track of their appointments and schedules, "to do" lists, important dates, phone numbers and addresses, meeting notes, and even movies they'd like to see or books they'd like to read.
•Exercise your brain. Take a class, do word puzzles, or learn a new language.
•Get enough rest and sleep.
•Exercise your body. Regular physical activity is not only good for your body, but also improves your mood, makes you feel more alert, and decreases tiredness (fatigue).
•Eat your veggies. Studies have shown that eating more vegetables can help you maintain brain power.
•Set up and follow routines. Pick a certain place for commonly lost objects and put them there each time. Try to keep the same daily schedule.
•Don't try to multi-task. Focus on one thing at a time.
•Track your memory problems. Keep a diary of when you notice problems and the events that are going on at the time. (You might track this in your planner.) Medicines taken, time of day, and the situation you are in may help you figure out what affects your memory. Keeping track of when the problems are most noticeable can also help you prepare by not planning important conversations or appointments during those times.
•Try not to focus so much on how much these symptoms are bothering you. Accepting the problem will help you deal with it. As many patients have noted, being able to laugh about things you can't control can help you cope. And remember, you probably notice your problems much more than others do. Sometimes we all have to laugh about forgetting to take the grocery list with us to the store.
Tuesday, September 7, 2010
Monday, September 6, 2010
Radiation Updates
Yikes, I've become quite lazy in keeping my blog up-to-date. It's not like I've been to busy or anything. I have no excuse this time.
Quite a bit has happened in the past month since I last "blogged." My 8th and last chemo treatment was on July 26th. What a happy day that was for me! Don took me to my appointment. It was the last time (hopefully!) either of us would see Grace and the other RNs who have been so good to me, so we stopped and got 2 dozen donuts for the staff. They were all so appreciative. Even though it started as a happy morning for me, since it was my last time getting chemo, it still ended up being a pretty crappy and stressful day at times. First, when we arrived, as we were waiting for a receptionsist so we could sign in, an older gentleman (who had just been through a weekend of 24/7 chemo treatment in the hospital) collapsed in the waiting room. I started freaking out because that's what had happened to me that landed me at Kaiser for 2 days. The nurses ran out to his aid, got his blood pressure, which was very low (just like mine was), and called paramedics to take him back to the hospital. Apparently Kaiser staff is not allowed to transport a patient to the ER. Crazy. Oncology is in the building right next to the main hospital, but now Kaiser is going to pay a $400 Ambulance bill rather than just wheel the guy over themselves.
I really felt for the poor man. I feel it's so unfair for someone his age (he looked old, although later Grace told me he's not really that old) to have to fight cancer. I'm young. Someone like me can handle it. But he just looked so fragile. It made me cry for him. I was so worried and stressed out for the old guy. I saw him later that day as we were leaving, and he was feeling much better and looked much better. His family was so kind to Don and I just because we were concerned for his welfare. A younger gentleman, who appeared to be his son, asked me my name and said, "Vesna, my family will pray for you so that you get better." How kind. I told him, "well, make it short and sweet 'cuz today's my last day of chemo and I'm outta here!" They laughed. Seems the old guy has Lymphoma (non-Hodgkin's) which is a lot tougher to beat.
Going back to treatment, I was a bit anxious because during chemo #7 I had such severe resetlessness. It was like restless leg syndrome only it was systemic - all over. Fortunately, Grace gave me my Benedryl first which mellowed me out. But it was a long wait for the chemo medication to arrive that we didn't start until after 9:00 a.m. Then I was told that Dr. Glowalla, my Oncologist, had also ordered an IV of Potassium Chloride after all my chemo so I was quite irritable that we would probably not be leaving the hospital until 1:00 p.m. PLUS, I was having my PICC Line removed which also made me nervous. I just no longer have the intestinal fortitude to handle gross stuff. And I proved that to be true around 12:30 p.m. after shortly finishing a big, juicy Fatburger. Don had bought me lunch since I was getting hungry. About 10 minutes after finishing my burger, Grace came in to remove the PICC Line. I honestly don't know if it was the stress or actually the chemo, but I gave up that Fatburger quick. Ick; I can never eat a Fatburger again, ever. I get a little green around the gills just thinking about one now.
The PICC Line removal was painless but I could feel a little "stringy" thing crawl out my veins. It's the kind of feeling that gives you goosebumps, and apparently nausea and vomiting as well. I hated the PICC Line experience; all of it. From insertion to removal. It always hurt a little, felt weird and gave me an awful rash. But if I ever had to do chemo again (God forbid) I'd rather have a PICC Line or a Port-a-Cath inserted in me than feel the burn of the chemo medicine in my veins. Don and I left around 1:00 p.m. and I celebrated with a long 2 day nap when I got home. How happy I was just knowing it was all over. Don't get me wrong; it wasn't a horrible experience considering it's saving my life. It's just not one I'd ever care to go through again. And hope to never have to go through, ever.
Fast forward to August 10th when I had my Radiology consult with Dr. Chen. He informed me that I'll be taking a CT scan later that day and they would make my face mask. This mask is used to hold my head in place while the giant radiation machine is "zapping" me in the chest and throat. Apparently, they are also going to radiate my neck where there are surrounding lymph nodes. They want to get everything for good measure. Dr. Chen also informed me of all side effects: sore throat, cough, chest pain, teeth/gum pain, loss of appetite (fat chance), sensitive skin, skin burn, etc. I'm not to shave my underarms (no problem, I haven't grown hair there in months!) and not to use deodorant or perfum/cologne/body spray; anything with alcohol will burn the skin. Side effects start about 2 to 3 weeks after radiation therapy starts.
I then met with a technician who runs a CT scan and then tattooed my chest with permanent dots (really tiny, you can't quite tell they're not freckles) which will be used as markers to line me up under the radiation machine each time. She also used a red marker on other parts of my chest and put round clear adhesive discs over the marks so they don't rub off. She then proceeded to place a very warm, almost hot, white, pliable netting on my face, let it wrap around my neck and head, waited two minutes for it to dry and harden and then pried off my face. That's the mask that will keep me still so radiation doesn't go into my chin or face. Here's a photo of me with the mask on during one of my treatment sessions:
Just like I thought, Silence of the Lambs!!! If you're claustrophobic, this is something you do not want to experience. I've been told some patients lose it. Fortunately for me, I don't think I'm claustrophobic and I'm really good about going to my happy place - McDonald's. French Fries....mmmmm.
On August 19th I had my PET Scan. I still hated it as much as the last time. It's not the machine, it's having to lay with your arms above your head for 20 minutes. They cramp up and it's like Chinese torture. On August 20th, Dr. Chen called me while I was with my husband and family in Mammoth to tell me that the results showed, "no abnormal signs of activity." My family and I celebrated! Here's a photo of us at the Train Concert in the woods at Mammoth. That's me with my "wanna-be Cher with bangs" wig:
That was such a great weekend for us all. We had a lot to be happy about. I'm not cancer-free, but this is the best news one can hope for at this point in the game. I later asked Dr. Chen, when I ran into him during one of my radiation treatments, what exactly "no signs of abnormal activity" meant and he explained that tumors have a metabolism (thus all the weight loss I experienced) and PET scans show active metabolisms as a red glow in the imaging. Before they scan you under the machine, you are injected with a glucose liquid and sit for an hour as it spreads throughout your body. The PET scan lights parts of your internal body that are metabolizing the glucose, so basically several of your organs are lit and any sort of tumor that may be active. When you light up in only expected areas (heart, lungs, stomach, etc), then that means there are no "abnormal" signs of activity. The tumor is "inactive." When I had the tumor, I lit up in my chest between the lungs. This time there was no E.T. phone home. I won't be declared cancer-free for probably another 2 or 3 years but I'm happy with the fact I don't light up where I'm not supposed to.
August 24th I started my radiation therapy. It's 12 treatments, 5 days a week so it's taking a total of almost 3 weeks to do (Labor Day weekend fell on the last week). I've had 9 treatments so far and just started feeling the sore throat and chest pain side effect 4 days ago, right after my 8th treatment. Other than that, it's relatively quick and painless. I do get tired several hours after treatment so I usually take a later afternoon nap. It's kind of screwed up my sleep schedule but that's OK, I'm not back at work yet. The actual treatment lasts about 6 minutes, 5 of which are setting me up and lining me up on the table. One minute is the actual radiation and it's a low dose since the tumor is in a risky spot, between the lungs and in front of the heart. Long term potential side effects are respiratory issues and heart disease. Makes one think the cure is worse than the disease, but if I didn't get chemo and radiation the Hodgkin's would have killed me. Dr. Chen told me they are willing to take the risk. So am I.
As I was saying, actual treatment is 1 minute long with 5 minutes spent prepping me. The longest part of this whole thing is waiting for my name to light up on a board when it's my turn. I've waited anywhere from 3 minutes to 45 minutes:
On the 8th treatment, which was just last Thursday (Sept. 2nd), Angel went with me and was really great about taking a bunch of pictures of the procedure. The Radiologist Raffi and the Technician Chuck (I think that was his name) were really cooperative and even showed Angel how the machine rotates to "zap" me in the chest and in the back. Here are the photos from that day. The last photo is taken with Raffi:
Today is Labor Day so I didn't have treatment. I thought this may be the perfect day to update my blog. I only have 3 more radiation sessions to go so that means I'll be finished this Thursday. THEN NO MORE TREATMENT WHATSOEVER!!!! YAYAYAYAYAYAYAYAAAAAYYYYY!!!! I'm so excited! I'll only have to go in for a test in 3 months to make sure everything is still OK and the cancer isn't rearing it's ugly head again and I'm very optomistic such will be the case. I've been a text book Stage 1B patient. Everything has gone as best as it can be hoped for. Right now I only have a sore throat and, although it is quite irritating and makes it difficult for me to eat my favorite foods, it's nothing compared to other side effects. Honestly though, I should be eating pudding, ice cream and jell-o. Anyone would be thrilled to be on that kind of diet, but I really like none of those things so today I choked down 8 KFC hot wings. Really, how stupid is that? I got one of the most abrasive, crunchy, scratchy meals for lunch. Don't laugh yet, earlier today I purchased all the ingredients to make CRUNCHY tacos for dinner tonight. I think I'll save that for tomorrow night. In the meantime maybe my doctor will prescribe some liquid lidocaine for me so I can do shots it between tacos. Tonight maybe I'll stick to soup. Cream of something soup. Eating those hot wings was a really dumbass idea. I'm pretty sure I'll be trying to choke down another half dozen later this evening. I'm a glutton for punishment and nothing keeps me away from my favorite junk foods.
I still find it quite remarkable that I have a disease that could have killed me. Since Hodgkin's is so treatable, it's easy to forget sometimes that it's still cancer. Instead of worrying whether or not I'm going to get cancer again, or if I'm going to die from this eventually, I guess I just have faith that God has a plan for me. Part of me lives like there's no tomorrow (I will have that extra helping of pie) and part of me lives like I have many more tomorrows (I better fatten up that IRA and 401K). I'm just grateful for every day that I have to enjoy my life, my wonderful husband, my blessed family, my awesome friends, my beautiful home, my God given life.
I have more blogging coming up in the next few months and years. This journey is not over yet.
Quite a bit has happened in the past month since I last "blogged." My 8th and last chemo treatment was on July 26th. What a happy day that was for me! Don took me to my appointment. It was the last time (hopefully!) either of us would see Grace and the other RNs who have been so good to me, so we stopped and got 2 dozen donuts for the staff. They were all so appreciative. Even though it started as a happy morning for me, since it was my last time getting chemo, it still ended up being a pretty crappy and stressful day at times. First, when we arrived, as we were waiting for a receptionsist so we could sign in, an older gentleman (who had just been through a weekend of 24/7 chemo treatment in the hospital) collapsed in the waiting room. I started freaking out because that's what had happened to me that landed me at Kaiser for 2 days. The nurses ran out to his aid, got his blood pressure, which was very low (just like mine was), and called paramedics to take him back to the hospital. Apparently Kaiser staff is not allowed to transport a patient to the ER. Crazy. Oncology is in the building right next to the main hospital, but now Kaiser is going to pay a $400 Ambulance bill rather than just wheel the guy over themselves.
I really felt for the poor man. I feel it's so unfair for someone his age (he looked old, although later Grace told me he's not really that old) to have to fight cancer. I'm young. Someone like me can handle it. But he just looked so fragile. It made me cry for him. I was so worried and stressed out for the old guy. I saw him later that day as we were leaving, and he was feeling much better and looked much better. His family was so kind to Don and I just because we were concerned for his welfare. A younger gentleman, who appeared to be his son, asked me my name and said, "Vesna, my family will pray for you so that you get better." How kind. I told him, "well, make it short and sweet 'cuz today's my last day of chemo and I'm outta here!" They laughed. Seems the old guy has Lymphoma (non-Hodgkin's) which is a lot tougher to beat.
Going back to treatment, I was a bit anxious because during chemo #7 I had such severe resetlessness. It was like restless leg syndrome only it was systemic - all over. Fortunately, Grace gave me my Benedryl first which mellowed me out. But it was a long wait for the chemo medication to arrive that we didn't start until after 9:00 a.m. Then I was told that Dr. Glowalla, my Oncologist, had also ordered an IV of Potassium Chloride after all my chemo so I was quite irritable that we would probably not be leaving the hospital until 1:00 p.m. PLUS, I was having my PICC Line removed which also made me nervous. I just no longer have the intestinal fortitude to handle gross stuff. And I proved that to be true around 12:30 p.m. after shortly finishing a big, juicy Fatburger. Don had bought me lunch since I was getting hungry. About 10 minutes after finishing my burger, Grace came in to remove the PICC Line. I honestly don't know if it was the stress or actually the chemo, but I gave up that Fatburger quick. Ick; I can never eat a Fatburger again, ever. I get a little green around the gills just thinking about one now.
The PICC Line removal was painless but I could feel a little "stringy" thing crawl out my veins. It's the kind of feeling that gives you goosebumps, and apparently nausea and vomiting as well. I hated the PICC Line experience; all of it. From insertion to removal. It always hurt a little, felt weird and gave me an awful rash. But if I ever had to do chemo again (God forbid) I'd rather have a PICC Line or a Port-a-Cath inserted in me than feel the burn of the chemo medicine in my veins. Don and I left around 1:00 p.m. and I celebrated with a long 2 day nap when I got home. How happy I was just knowing it was all over. Don't get me wrong; it wasn't a horrible experience considering it's saving my life. It's just not one I'd ever care to go through again. And hope to never have to go through, ever.
Fast forward to August 10th when I had my Radiology consult with Dr. Chen. He informed me that I'll be taking a CT scan later that day and they would make my face mask. This mask is used to hold my head in place while the giant radiation machine is "zapping" me in the chest and throat. Apparently, they are also going to radiate my neck where there are surrounding lymph nodes. They want to get everything for good measure. Dr. Chen also informed me of all side effects: sore throat, cough, chest pain, teeth/gum pain, loss of appetite (fat chance), sensitive skin, skin burn, etc. I'm not to shave my underarms (no problem, I haven't grown hair there in months!) and not to use deodorant or perfum/cologne/body spray; anything with alcohol will burn the skin. Side effects start about 2 to 3 weeks after radiation therapy starts.
I then met with a technician who runs a CT scan and then tattooed my chest with permanent dots (really tiny, you can't quite tell they're not freckles) which will be used as markers to line me up under the radiation machine each time. She also used a red marker on other parts of my chest and put round clear adhesive discs over the marks so they don't rub off. She then proceeded to place a very warm, almost hot, white, pliable netting on my face, let it wrap around my neck and head, waited two minutes for it to dry and harden and then pried off my face. That's the mask that will keep me still so radiation doesn't go into my chin or face. Here's a photo of me with the mask on during one of my treatment sessions:
Just like I thought, Silence of the Lambs!!! If you're claustrophobic, this is something you do not want to experience. I've been told some patients lose it. Fortunately for me, I don't think I'm claustrophobic and I'm really good about going to my happy place - McDonald's. French Fries....mmmmm.
On August 19th I had my PET Scan. I still hated it as much as the last time. It's not the machine, it's having to lay with your arms above your head for 20 minutes. They cramp up and it's like Chinese torture. On August 20th, Dr. Chen called me while I was with my husband and family in Mammoth to tell me that the results showed, "no abnormal signs of activity." My family and I celebrated! Here's a photo of us at the Train Concert in the woods at Mammoth. That's me with my "wanna-be Cher with bangs" wig:
That was such a great weekend for us all. We had a lot to be happy about. I'm not cancer-free, but this is the best news one can hope for at this point in the game. I later asked Dr. Chen, when I ran into him during one of my radiation treatments, what exactly "no signs of abnormal activity" meant and he explained that tumors have a metabolism (thus all the weight loss I experienced) and PET scans show active metabolisms as a red glow in the imaging. Before they scan you under the machine, you are injected with a glucose liquid and sit for an hour as it spreads throughout your body. The PET scan lights parts of your internal body that are metabolizing the glucose, so basically several of your organs are lit and any sort of tumor that may be active. When you light up in only expected areas (heart, lungs, stomach, etc), then that means there are no "abnormal" signs of activity. The tumor is "inactive." When I had the tumor, I lit up in my chest between the lungs. This time there was no E.T. phone home. I won't be declared cancer-free for probably another 2 or 3 years but I'm happy with the fact I don't light up where I'm not supposed to.
August 24th I started my radiation therapy. It's 12 treatments, 5 days a week so it's taking a total of almost 3 weeks to do (Labor Day weekend fell on the last week). I've had 9 treatments so far and just started feeling the sore throat and chest pain side effect 4 days ago, right after my 8th treatment. Other than that, it's relatively quick and painless. I do get tired several hours after treatment so I usually take a later afternoon nap. It's kind of screwed up my sleep schedule but that's OK, I'm not back at work yet. The actual treatment lasts about 6 minutes, 5 of which are setting me up and lining me up on the table. One minute is the actual radiation and it's a low dose since the tumor is in a risky spot, between the lungs and in front of the heart. Long term potential side effects are respiratory issues and heart disease. Makes one think the cure is worse than the disease, but if I didn't get chemo and radiation the Hodgkin's would have killed me. Dr. Chen told me they are willing to take the risk. So am I.
As I was saying, actual treatment is 1 minute long with 5 minutes spent prepping me. The longest part of this whole thing is waiting for my name to light up on a board when it's my turn. I've waited anywhere from 3 minutes to 45 minutes:
On the 8th treatment, which was just last Thursday (Sept. 2nd), Angel went with me and was really great about taking a bunch of pictures of the procedure. The Radiologist Raffi and the Technician Chuck (I think that was his name) were really cooperative and even showed Angel how the machine rotates to "zap" me in the chest and in the back. Here are the photos from that day. The last photo is taken with Raffi:
Today is Labor Day so I didn't have treatment. I thought this may be the perfect day to update my blog. I only have 3 more radiation sessions to go so that means I'll be finished this Thursday. THEN NO MORE TREATMENT WHATSOEVER!!!! YAYAYAYAYAYAYAYAAAAAYYYYY!!!! I'm so excited! I'll only have to go in for a test in 3 months to make sure everything is still OK and the cancer isn't rearing it's ugly head again and I'm very optomistic such will be the case. I've been a text book Stage 1B patient. Everything has gone as best as it can be hoped for. Right now I only have a sore throat and, although it is quite irritating and makes it difficult for me to eat my favorite foods, it's nothing compared to other side effects. Honestly though, I should be eating pudding, ice cream and jell-o. Anyone would be thrilled to be on that kind of diet, but I really like none of those things so today I choked down 8 KFC hot wings. Really, how stupid is that? I got one of the most abrasive, crunchy, scratchy meals for lunch. Don't laugh yet, earlier today I purchased all the ingredients to make CRUNCHY tacos for dinner tonight. I think I'll save that for tomorrow night. In the meantime maybe my doctor will prescribe some liquid lidocaine for me so I can do shots it between tacos. Tonight maybe I'll stick to soup. Cream of something soup. Eating those hot wings was a really dumbass idea. I'm pretty sure I'll be trying to choke down another half dozen later this evening. I'm a glutton for punishment and nothing keeps me away from my favorite junk foods.
I still find it quite remarkable that I have a disease that could have killed me. Since Hodgkin's is so treatable, it's easy to forget sometimes that it's still cancer. Instead of worrying whether or not I'm going to get cancer again, or if I'm going to die from this eventually, I guess I just have faith that God has a plan for me. Part of me lives like there's no tomorrow (I will have that extra helping of pie) and part of me lives like I have many more tomorrows (I better fatten up that IRA and 401K). I'm just grateful for every day that I have to enjoy my life, my wonderful husband, my blessed family, my awesome friends, my beautiful home, my God given life.
I have more blogging coming up in the next few months and years. This journey is not over yet.
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| Alex & I during lunch with Angel and my new friend and blog follower Liz. |
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| Angel & I on our way to radiation treatment. |
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| Angel & I posing in front of one of the nature scenes in the radiation lab. |
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