Cancer has stolen my life from me.
It's true that I'm in remission now, that my chemo treatments are done. It's also true that I was able to maintain much of my normal lifestyle while I was going through chemo. I went to work most days, and enjoyed social activities with my friends. But cancer still stole some of my life from me.
I had to give up one of my favorite activities, studying Chinese, while going through chemo. I just didn't have enough energy or ability to concentrate to keep going to class. I gave up weekly meetings at a coffee shop with other Chinese students for the same reasons. I gave up working on my fiction writing because I couldn't concentrate on it. I cut my work hours. I lost vacation time to chemotherapy. I gave up driving so my husband had to be my chauffeur. I gave up going for long walks.
Now that I'm in remission, my oncologist wants to keep me on a maintenance regimen of Rituxan, the monoclonal antibody I received during chemo. Every other month I have to return to the chemo infusion center to receive an intravenous dose of Rituxan. If the Rituxan makes me feel tired afterward, I'll have to sacrifice some vacation time for the treatments. If that is the case, then over the next two years I'll have to use six PTO days a year for medical treatments. That's vacation time I could have used for long weekends, trips to the beach, or just a day to loaf around the house and pamper myself. And now I have to work my treatments around other activities like actual vacations, other medical appointments, and workplace commitments.
I'll also have to spend the rest of my life having annual CT scans and going to see my oncologist at least once a year. I like my oncologist, but there's a part of me that resents having to spend so much time seeing him. I resent all those CT scans, and especially the hated barium sulfate contrast solution I have to consume before each scan. I have to worry about the cancer recurring and what treatment I'll receive the next time it comes back. I have to think about what I'll do if there isn't any viable treatment for me next time beyond a stem cell or bone marrow transplant, and whether I want to give up quality of life for quantity. I have to think about a lot of things I really don't want to think about.
I know my problems are small compared to many other people. But that doesn't make me feel any better about the intrusion of cancer into my life and the ways it's going to change me in the future. I resent it, and I want my pre-cancer life back.
Showing posts with label Cancer. Show all posts
Showing posts with label Cancer. Show all posts
Sunday, April 14, 2013
Tuesday, April 9, 2013
Being Kind to the Sick
I haven't blogged much recently. But when a couple of my Facebook friends shared the following links, I decided it was time.
The first link is to a blog that gives some excellent advice for those who know someone with a serious illness: Some Thoughts on How to Be a Friend to Someone With a Serious Illness. I wholeheartedly endorse everything the blogger says. Good intentions are not enough. "I meant well" doesn't cut it. Think before you speak. Don't offer to help if you don't mean it. And before you say "I'm praying for you", stop to think about the spiritual beliefs of the person you intend to say it to. Go ahead and pray, but keep it to yourself unless you know the person you're speaking to will appreciate the gesture.
Link #2 is advice for saying the right thing: How not to say the wrong thing.
It covers some similar territory, but it's worth a read because it gives a clever concrete way to evaluate whether the thing you're thinking of saying is being said to the right person. We all want to show sympathy by relating similar experiences we've had. It's a natural behavior. But it doesn't really help the person who's sick or in trouble.
Finally, I'd like to relate some advice of my own for those who are visiting a sick friend or relative in the hospital. Anyone who's been in a hospital knows that they are awful places to be in. A day or two isn't too bad, but if you're in the hospital more than 48 hours it's pretty miserable. When you're in the hospital, you're not there to be comfortable. You're there for medical treatment. You're probably on some medication that may make you disoriented, drowsy, irritable, or nauseous. You don't get good rest because hospital staff are waking you every hour to check your vitals. You may be in pain or suffering symptoms of an illness, you may be connected to an IV or monitors that are unpleasant and annoying, you may not be able to get up and walk around or eat or go to the bathroom as you normally would. You may not feel like having visitors.
It's important to make sure the patient is really comfortable with having visitors before you pay the person a visit. And don't just accept a "Yes" at face value if it's from your dad who never complains, or grandma who really loves to see the grandkids. Dad or Grandma may not really feel up to visitors but be unwilling to say no. Ask some additional questions to try to assess how the patient really feels before you accept a yes answer.
Even if the patient is feeling good and has no problem with visitors, don't take the whole family at once, or the whole team from work. Hospital rooms are small. If the crowd is too big everyone will get in each other's way and block the hospital personnel if they need access to the patient. Most of the group won't get much time with the patient. It's even more important to not take too many people if the hospital has non-private rooms. You can have a crowd for a few minutes if the patient is up for it, but don't hang around.
Pay attention to the hospital rules. If the sign on the bathroom door says "Patient only restroom", don't use it. Don't leave your germs in there to endanger your friend or family member. Don't hang around when visiting hours are over, even if the nurses don't tell you to leave. Don't leave children unattended. Hospitals are not playgrounds. In fact, I'd recommend not taking kids unless the patient you're going to visit is Mom or Dad. Hospitals are kind of scary and creepy. And don't stand around talking loudly about Grandma's surgery in the hallway or elevator. Keep personal information private.
My first stint of chemo, I had to be hospitalized for 5-7 days a month, and the oncology unit had several shared rooms. One of my roommates had a group of family members who came to visit every day, four or five of them at once. They seemed not to notice me. Nothing separated my bed from their relative's bed but a flimsy curtain. But they stayed for hours, used the patient-only bathroom, turned the tv on too loud, and were generally just horribly inconsiderate. And most importantly, the patient wasn't getting anything out of their presence; she was on high doses of pain relievers and much of the time was either semi-conscious or so disoriented that she was unaware of who was with her. Don't be that woman's family when you go to visit someone at the hospital.
I hope some of the advice is valuable to some people. It's always hard to know what to do when someone is seriously ill or injured. Be kind and caring, but be sure you're being kind to the person who's sick. You can be kind to yourself some other time. And then when you're injured or seriously ill, which is almost certain to happen at some point in your life, your friends will be kind to you.
The first link is to a blog that gives some excellent advice for those who know someone with a serious illness: Some Thoughts on How to Be a Friend to Someone With a Serious Illness. I wholeheartedly endorse everything the blogger says. Good intentions are not enough. "I meant well" doesn't cut it. Think before you speak. Don't offer to help if you don't mean it. And before you say "I'm praying for you", stop to think about the spiritual beliefs of the person you intend to say it to. Go ahead and pray, but keep it to yourself unless you know the person you're speaking to will appreciate the gesture.
Link #2 is advice for saying the right thing: How not to say the wrong thing.
It covers some similar territory, but it's worth a read because it gives a clever concrete way to evaluate whether the thing you're thinking of saying is being said to the right person. We all want to show sympathy by relating similar experiences we've had. It's a natural behavior. But it doesn't really help the person who's sick or in trouble.
Finally, I'd like to relate some advice of my own for those who are visiting a sick friend or relative in the hospital. Anyone who's been in a hospital knows that they are awful places to be in. A day or two isn't too bad, but if you're in the hospital more than 48 hours it's pretty miserable. When you're in the hospital, you're not there to be comfortable. You're there for medical treatment. You're probably on some medication that may make you disoriented, drowsy, irritable, or nauseous. You don't get good rest because hospital staff are waking you every hour to check your vitals. You may be in pain or suffering symptoms of an illness, you may be connected to an IV or monitors that are unpleasant and annoying, you may not be able to get up and walk around or eat or go to the bathroom as you normally would. You may not feel like having visitors.
It's important to make sure the patient is really comfortable with having visitors before you pay the person a visit. And don't just accept a "Yes" at face value if it's from your dad who never complains, or grandma who really loves to see the grandkids. Dad or Grandma may not really feel up to visitors but be unwilling to say no. Ask some additional questions to try to assess how the patient really feels before you accept a yes answer.
Even if the patient is feeling good and has no problem with visitors, don't take the whole family at once, or the whole team from work. Hospital rooms are small. If the crowd is too big everyone will get in each other's way and block the hospital personnel if they need access to the patient. Most of the group won't get much time with the patient. It's even more important to not take too many people if the hospital has non-private rooms. You can have a crowd for a few minutes if the patient is up for it, but don't hang around.
Pay attention to the hospital rules. If the sign on the bathroom door says "Patient only restroom", don't use it. Don't leave your germs in there to endanger your friend or family member. Don't hang around when visiting hours are over, even if the nurses don't tell you to leave. Don't leave children unattended. Hospitals are not playgrounds. In fact, I'd recommend not taking kids unless the patient you're going to visit is Mom or Dad. Hospitals are kind of scary and creepy. And don't stand around talking loudly about Grandma's surgery in the hallway or elevator. Keep personal information private.
My first stint of chemo, I had to be hospitalized for 5-7 days a month, and the oncology unit had several shared rooms. One of my roommates had a group of family members who came to visit every day, four or five of them at once. They seemed not to notice me. Nothing separated my bed from their relative's bed but a flimsy curtain. But they stayed for hours, used the patient-only bathroom, turned the tv on too loud, and were generally just horribly inconsiderate. And most importantly, the patient wasn't getting anything out of their presence; she was on high doses of pain relievers and much of the time was either semi-conscious or so disoriented that she was unaware of who was with her. Don't be that woman's family when you go to visit someone at the hospital.
I hope some of the advice is valuable to some people. It's always hard to know what to do when someone is seriously ill or injured. Be kind and caring, but be sure you're being kind to the person who's sick. You can be kind to yourself some other time. And then when you're injured or seriously ill, which is almost certain to happen at some point in your life, your friends will be kind to you.
Saturday, December 1, 2012
Linkmania
Copy of lost Da Vinci masterpiece recovered.
Pythons sued over Spamalot royalties. Some people will do anything for money.
Skyfall fails tech test. (Warning: Spoilers) I notice stuff like that, too. But it's a movie. Movies aren't realistic.
UK stand on teaching Creationism. Can we do this too?
Australia bans cigarette branding. Wish we could do this, too. It seems Big Tobacco doesn't have the Australian government in its pocket as it does in the US.
Scientists detect 12 billion year old supernova. We already have time travel. It's called astronomy.
Easter Island statue walks
What we can learn from poop.
Bendamustine as a treatment for indolent lymphomas. This is pretty technical, but I still found it of interest since I'm receiving Bendamustine as part of my treatment.
More info about Bendamustine.
Pythons sued over Spamalot royalties. Some people will do anything for money.
Skyfall fails tech test. (Warning: Spoilers) I notice stuff like that, too. But it's a movie. Movies aren't realistic.
UK stand on teaching Creationism. Can we do this too?
Australia bans cigarette branding. Wish we could do this, too. It seems Big Tobacco doesn't have the Australian government in its pocket as it does in the US.
Scientists detect 12 billion year old supernova. We already have time travel. It's called astronomy.
Easter Island statue walks
What we can learn from poop.
Bendamustine as a treatment for indolent lymphomas. This is pretty technical, but I still found it of interest since I'm receiving Bendamustine as part of my treatment.
More info about Bendamustine.
Tuesday, October 30, 2012
Wedding Blues
When I was a girl, I didn't daydream about my wedding. I didn't play dress-up with my mother' wedding veil (she didn't have one). I suppose most young girls dream about what kind of wedding ceremony they'll have, what sort of gown they'll wear, but I never did. I dreamed about marriage and what kind of man I would marry, but never about the actual wedding. I find traditional weddings ridiculously expensive, boring and rather gauche. Wedding gowns are ugly. I've never yet seen one that I found even mildly attractive. I don't see the point in buying a dress that costs thousands of dollars and will only be worn once. A party is nice, too, but how can anyone afford to spend $10,000 for a one-day party? Not to mention the expense of the honeymoon.
My first wedding wasn't much. My husband and I eloped to a town neither of us knew well. We found a church near the apartment we had just rented and persuaded the pastor to marry us, even though we weren't members of his congregation and had never attended his church (and never would). I wore the only dress I owned at the time. My husband wore his only suit (a polyester leisure number). We had no friends or family present. No one took any pictures. Only the pastor and the church secretary were there to witness. We didn't have a honeymoon. We couldn't even afford to go out to a restaurant for dinner afterward.
My Special Someone and I have been a couple for 21 years, but we're not married. I love him dearly, but I'm divorced, and for many years my attitude toward marriage was "Been there, done that". He wanted marriage, I didn't. I felt we were happy enough as a couple. If the state we live in had a common law statute, we would be considered married already. Marriage was a formality we didn't need. But in 2003-2004 when I went through cancer treatment for the first time, my guy took care of me and made tremendous sacrifices for me. And the best thing I could think of to do to show him my love and appreciation was to tell him that I wanted to marry him. It made him happy. It made me happy, too. We wanted a ceremony, a special event where we could celebrate with our friends. But as I started thinking about the process of organizing such a celebration, I started to run into problems.
As I said earlier, I don't like traditional weddings. I don't want flowers everywhere or a poofy white gown or dancing or an open bar. But I couldn't decide what I did want. I did want to dress up and look pretty. But did I want to be an elven princess or a pirate wench? Where should we hold the ceremony - in a church, a garden, a public venue or a private home? Did we want a catered reception? What kind of rings would we exchange to act as tokens of our union? And most importantly, how were we going to pay for any of this once we made up our minds? My parents are long gone. If I want a wedding I have to pay for it out of my own pocket.
It wasn't long before indecision, procrastination (at which I am a master) and budget woes brought all the wedding planning to a halt. We basically just gave up on it. We still wanted to get married, but we just couldn't decide what to do. We can't even make up our minds what kind of rings we'd like, just that we don't want traditional gold and diamonds - I don't like either the metal or the gem. Things got more complicated for us, with our complete inability to plan anything, when the county changed its process for acquiring marriage licenses and required both partners to appear at the county office to complete the application. We couldn't rearrange our work schedules to meet there and get the license. Gradually the plan went from a ceremony and a party with our friends to a civil ceremony with an unfamiliar judge officiating, but we couldn't manage to organize even that. It didn't sound like fun, so although I really do want to marry, I didn't have much enthusiasm for it.
It was cancer that brought marriage back to the forefront of importance in my mind. What happens if I become incapable of making decisions about my care? If he isn't my husband, legally, he won't be able to make decisions for me unless I give him power of attorney. And the same is true if anything happens to him. Marriage has tax advantages too, and allows us to pool our funds to increase our buying power. And even if all that wasn't true, I want to marry him now. I want to say that he's my husband, not my boyfriend/fiancee/Significant Other/Spousal Equivalent. I want him to call me his wife. I want to have a ring that tells people I have a life partner.
This weekend we'll be attending a science fiction and fantasy convention, Orycon, which we've both been attending for many years. In fact, the only time I've missed the convention since 1990 was in 2003 when I was going through chemo and was too ill to attend. I'm delighted that I'll be able to attend in spite of my current illness. It's also my birthday this weekend, so I can enjoy celebrating my birthday at the convention as well. And this gave me an idea: What if we added another special event to the weekend? Our friends have been threatening to drag us off to be married at a convention for several years. Why not just do it? Stop worrying about all the details that we can't afford anyway and just have a small civil ceremony during an event that is meaningful to both of us.
There's a tv ad for some product, I think perhaps for a smartphone, that features a whole group of friends spontaneously organizing a wedding for a couple using some social networking app. They arrange for a venue, a band, decorations and a potluck reception dinner. It's all very sweet and romantic and unrealistic. It would be great if life was like that, but real people have jobs and budgets and children. Real people can't be that spontaneous. Pity. It would be fun to just show up someplace and have someone throw a surprise wedding for us. We've got a marriage license now; we just need somewhere to use it. I hope that place will be the convention this weekend, if we can manage it. It won't be the kind of ceremony we hoped for, but maybe we'll be able to do that later. Or maybe it will be better than anything we could imagine.
My first wedding wasn't much. My husband and I eloped to a town neither of us knew well. We found a church near the apartment we had just rented and persuaded the pastor to marry us, even though we weren't members of his congregation and had never attended his church (and never would). I wore the only dress I owned at the time. My husband wore his only suit (a polyester leisure number). We had no friends or family present. No one took any pictures. Only the pastor and the church secretary were there to witness. We didn't have a honeymoon. We couldn't even afford to go out to a restaurant for dinner afterward.
My Special Someone and I have been a couple for 21 years, but we're not married. I love him dearly, but I'm divorced, and for many years my attitude toward marriage was "Been there, done that". He wanted marriage, I didn't. I felt we were happy enough as a couple. If the state we live in had a common law statute, we would be considered married already. Marriage was a formality we didn't need. But in 2003-2004 when I went through cancer treatment for the first time, my guy took care of me and made tremendous sacrifices for me. And the best thing I could think of to do to show him my love and appreciation was to tell him that I wanted to marry him. It made him happy. It made me happy, too. We wanted a ceremony, a special event where we could celebrate with our friends. But as I started thinking about the process of organizing such a celebration, I started to run into problems.
As I said earlier, I don't like traditional weddings. I don't want flowers everywhere or a poofy white gown or dancing or an open bar. But I couldn't decide what I did want. I did want to dress up and look pretty. But did I want to be an elven princess or a pirate wench? Where should we hold the ceremony - in a church, a garden, a public venue or a private home? Did we want a catered reception? What kind of rings would we exchange to act as tokens of our union? And most importantly, how were we going to pay for any of this once we made up our minds? My parents are long gone. If I want a wedding I have to pay for it out of my own pocket.
It wasn't long before indecision, procrastination (at which I am a master) and budget woes brought all the wedding planning to a halt. We basically just gave up on it. We still wanted to get married, but we just couldn't decide what to do. We can't even make up our minds what kind of rings we'd like, just that we don't want traditional gold and diamonds - I don't like either the metal or the gem. Things got more complicated for us, with our complete inability to plan anything, when the county changed its process for acquiring marriage licenses and required both partners to appear at the county office to complete the application. We couldn't rearrange our work schedules to meet there and get the license. Gradually the plan went from a ceremony and a party with our friends to a civil ceremony with an unfamiliar judge officiating, but we couldn't manage to organize even that. It didn't sound like fun, so although I really do want to marry, I didn't have much enthusiasm for it.
It was cancer that brought marriage back to the forefront of importance in my mind. What happens if I become incapable of making decisions about my care? If he isn't my husband, legally, he won't be able to make decisions for me unless I give him power of attorney. And the same is true if anything happens to him. Marriage has tax advantages too, and allows us to pool our funds to increase our buying power. And even if all that wasn't true, I want to marry him now. I want to say that he's my husband, not my boyfriend/fiancee/Significant Other/Spousal Equivalent. I want him to call me his wife. I want to have a ring that tells people I have a life partner.
This weekend we'll be attending a science fiction and fantasy convention, Orycon, which we've both been attending for many years. In fact, the only time I've missed the convention since 1990 was in 2003 when I was going through chemo and was too ill to attend. I'm delighted that I'll be able to attend in spite of my current illness. It's also my birthday this weekend, so I can enjoy celebrating my birthday at the convention as well. And this gave me an idea: What if we added another special event to the weekend? Our friends have been threatening to drag us off to be married at a convention for several years. Why not just do it? Stop worrying about all the details that we can't afford anyway and just have a small civil ceremony during an event that is meaningful to both of us.
There's a tv ad for some product, I think perhaps for a smartphone, that features a whole group of friends spontaneously organizing a wedding for a couple using some social networking app. They arrange for a venue, a band, decorations and a potluck reception dinner. It's all very sweet and romantic and unrealistic. It would be great if life was like that, but real people have jobs and budgets and children. Real people can't be that spontaneous. Pity. It would be fun to just show up someplace and have someone throw a surprise wedding for us. We've got a marriage license now; we just need somewhere to use it. I hope that place will be the convention this weekend, if we can manage it. It won't be the kind of ceremony we hoped for, but maybe we'll be able to do that later. Or maybe it will be better than anything we could imagine.
Saturday, October 20, 2012
Why I Hate Chemo
Okay, I admit it, I'm tired and bitchy today.
Why I hate chemo:
1. Fatigue
2. Constipation
3. Fatigue
4. Not being able to eat my favorite foods
5. Worrying about exposure to bacteria and viruses
6. Fatigue
7. Not having the energy to enjoy my usual social activities
8. Not getting to see my friends as often as I'd like
9. Fatigue
10. Fatigue
Why I hate chemo:
1. Fatigue
2. Constipation
3. Fatigue
4. Not being able to eat my favorite foods
5. Worrying about exposure to bacteria and viruses
6. Fatigue
7. Not having the energy to enjoy my usual social activities
8. Not getting to see my friends as often as I'd like
9. Fatigue
10. Fatigue
Thursday, October 18, 2012
There Is A Fungus Among Us
I'm happy to say that I'm not experiencing some of the most unpleasant potential side effects of chemotherapy. For those who aren't aware of this, chemo can have a lot of unpleasant side effects: Nausea, vomiting, diarrhea, constipation, loss of appetite, hair loss, fatigue, sleep disturbances, peripheral neuropathy, infections, skin disorders... The list is nearly endless, and almost all chemo drugs have these same potential effects. Last time I went through chemo, I had most of them. I still have neuropathy in my toes as a result of chemo, and my digestive system's behavior never returned to its pre-chemo state. I get nauseous easily, and have more lower GI issues than I did before I went through chemo.
My recollection of my previous chemo experience focuses mainly on diarrhea; it seems to me that I had one continuous eight-month stretch of it, though I think in reality I had a few periods of diarrhea-free time. All the antibiotics I was taking to prevent infections killed off my beneficial gut bacteria and allowed my mortal enemy Clostridium Difficile to overpopulate, turning my GI tract into an express tunnel. It was miserable. So diarrhea was my biggest fear this time around. But I haven't had any. Instead I seem to be having just the opposite. Food goes in the pie hole and nothing comes out the other end.
On top of that, since my immune system isn't at peak efficiency right now, my asthma inhaler has caused me to develop an oral fungal infestation, commonly known as thrush. It doesn't hurt, but it is uncomfortable and annoying. I have to take Nystatin, an antifungal mouthwash essentially. It comes in banana yellow, and oddly tastes a little like banana, too. Not the most offensive liquid medication I've ever taken, but not my favorite taste sensation. Good thing I like bananas. My oncologist has indicated that I should expect to be taking a lot of Nystatin during chemo.
But at least I'm not on the regimen of antibiotics, antifungals, and steroids that I had to take last time. I just have to get used to making Nystatin part of my daily beverage choices, and find what method works best to keep the train running smoothly in the intestinal tract. And deal with the fatigue. The fatigue should improve as I get farther away from my most recent chemo treatment. But this week I am feeling pretty worn out.
My recollection of my previous chemo experience focuses mainly on diarrhea; it seems to me that I had one continuous eight-month stretch of it, though I think in reality I had a few periods of diarrhea-free time. All the antibiotics I was taking to prevent infections killed off my beneficial gut bacteria and allowed my mortal enemy Clostridium Difficile to overpopulate, turning my GI tract into an express tunnel. It was miserable. So diarrhea was my biggest fear this time around. But I haven't had any. Instead I seem to be having just the opposite. Food goes in the pie hole and nothing comes out the other end.
On top of that, since my immune system isn't at peak efficiency right now, my asthma inhaler has caused me to develop an oral fungal infestation, commonly known as thrush. It doesn't hurt, but it is uncomfortable and annoying. I have to take Nystatin, an antifungal mouthwash essentially. It comes in banana yellow, and oddly tastes a little like banana, too. Not the most offensive liquid medication I've ever taken, but not my favorite taste sensation. Good thing I like bananas. My oncologist has indicated that I should expect to be taking a lot of Nystatin during chemo.
But at least I'm not on the regimen of antibiotics, antifungals, and steroids that I had to take last time. I just have to get used to making Nystatin part of my daily beverage choices, and find what method works best to keep the train running smoothly in the intestinal tract. And deal with the fatigue. The fatigue should improve as I get farther away from my most recent chemo treatment. But this week I am feeling pretty worn out.
Friday, October 12, 2012
Cancer Saga, part 2
I've finished my first chemo treatment for this round. Only two days at the infusion center, and the second day was just a couple of hours. I didn't get nauseous, and the Dexamethasone didn't give me the jitters or keep me awake like it did last time. The dose is much less this time. I haven't had any "Shedding" yet, either, as Jay Lake likes to refer to one of the other lovely side effects of chemo. I'm just really fatigued, achy, and feeling a little down. It's harder to keep the morale up when the fatigue sets in.
Diet is fun during chemo. I love fresh fruits and vegetables, and sushi is one of my favorite foods - nigiri sushi, with raw fish. But I shouldn't have those things while my immune system is vulnerable. And then there are the people. I have to avoid people. They have germs. When I go to work on the bus I'll be wearing a mask and gloves to protect me from other people's germs. If my co-workers have colds, I'll probably work from home.
But all of the above is still better than being in the hospital a week out of every month, and having to take injections to increase my white blood count. I can work. I can watch television. I can drive, at least some of the time. I spent a lot of my first day of chemo studying my Chinese textbook. I wouldn't have been able to do that the first time through treatment.
That doesn't mean this is going to be super-easy. Just about the time I start to feel pretty good and back to normal, I'll have to have another treatment. But this time I won't miss OryCon. I've attended OryCon every year since 1990, except for 2003, when I missed it due to chemo. This time my next chemo session isn't until after the convention, so I should be able to attend. That makes me happy. It's a tradition, and this year my honey is a program participant so I want to be there to support him. I'll just have to support him while wearing a mask to avoid the germs.
Diet is fun during chemo. I love fresh fruits and vegetables, and sushi is one of my favorite foods - nigiri sushi, with raw fish. But I shouldn't have those things while my immune system is vulnerable. And then there are the people. I have to avoid people. They have germs. When I go to work on the bus I'll be wearing a mask and gloves to protect me from other people's germs. If my co-workers have colds, I'll probably work from home.
But all of the above is still better than being in the hospital a week out of every month, and having to take injections to increase my white blood count. I can work. I can watch television. I can drive, at least some of the time. I spent a lot of my first day of chemo studying my Chinese textbook. I wouldn't have been able to do that the first time through treatment.
That doesn't mean this is going to be super-easy. Just about the time I start to feel pretty good and back to normal, I'll have to have another treatment. But this time I won't miss OryCon. I've attended OryCon every year since 1990, except for 2003, when I missed it due to chemo. This time my next chemo session isn't until after the convention, so I should be able to attend. That makes me happy. It's a tradition, and this year my honey is a program participant so I want to be there to support him. I'll just have to support him while wearing a mask to avoid the germs.
Sunday, September 30, 2012
Me Versus the C Word
I have cancer. It's not the first time.
Yes, that's right, I have cancer right now, and it's not my first entry in the cancer rodeo. That sounds pretty scary, doesn't it? It is scary. Cancer is scary. Cancer treatment is scary, too.
Nearly 10 years ago, I went in for surgery to have an ovarian fibroid removed. I had no thought of cancer, really. My doctor didn't think the fibroid was cancerous. It wasn't. But while the surgeon was looking at my innards, she noticed that I had some enlarged lymph nodes. She removed one and sent it for a biopsy.
I remember when I was told that I had cancer, I thought the doctor meant that I had ovarian cancer. I guess I was a little muddled after the surgery. What I had was Non-Hodgkin Lymphoma. Not just any old lymphoma, but an uncommon variety, Mantle Cell Lymphoma, that more typically affects people 20 years older than I was at the time. If you're interested in reading more about it, try here
They sent me home to recover from the surgery. I'd waited too long to have surgery and they couldn't do it laparoscopically, which in hindsight was a good thing. If they had done it as a laparascopy they probably wouldn't have found the cancer. My cancer history is a story of fortuitous coincidences like that, as I'll explain later.
I spent eight weeks healing from the surgery. Once I had recuperated, I started chemo treatments. They put me on a regimen called Hyper-CVAD-MTX/AraC supplemented by Rituxan. I think the Hyper stands for Hyper-intense. I had to have my treatments in the hospital, a week each month for eight months. I usually spent a couple of additional days in the hospital after the treatment was done, while they gave me blood or plasma transfusions and tried to get my white cell count back up.
I didn't throw up a lot, after they spent a lot of time finding the right anti-nausea medication. One medication they tried was Haldol, an anti-psychotic. Cancer treatment involves a lot of using medications for purposes for which they weren't originally intended. Haldol gave me weird muscle spasms in my neck. I couldn't stop turning my head to the left.
I also completely lost my appetite and stopped eating. My doctor had to prescribe an appetite-enhancing medication. I hated taking it, but it worked. Along with the anti-nausea meds and the appetite enhancer, I had to take a whole fleet of antibiotics, anti-fungals, steroids, drugs to counteract the side effects of the steroids, drugs to protect my kidneys from other drugs, drugs to prevent allergic reactions to the chemo drugs. My beneficial intestinal flora died and the less beneficial ones overpopulated, so that as Jay Lake put it, it was "like winning the toilet paper lottery". Every hair on my entire body fell out, not just my scalp hair but my eyebrows and lashes and even my nostril hair.
I was off work for a year. By the time I finished treatment, I could barely walk. I lost 40 or 50 pounds. I couldn't concentrate enough to read a book or watch an entire movie. I had become very isolated, seeing no one but the nurses and my doctor, and my Significant Other. My immune system was too weak to allow me to go out in public much, and I was too weak to visit with my friends, even on the phone.
During that time I learned a lot of things about cancer treatment I'd never known, despite the fact that both of my parents died of cancer. I didn't know that chemo can cause so many effects on the brain when it's not even being given for brain cancer. Chemo patients learn about something called "chemo brain", which describes how thick-headed you get on chemo. I don't remember some things that happened just before my treatment began, and my memories of that time period are foggy. That's chemo brain.
A month ago I went in for a routine mammogram. I'd recently been having a lot of health problems, which don't have any relevancy to the mammogram, but it's important to the overall story. My primary care had ordered a CT scan for me earlier, to look at my lungs, but I'd had to cancel because I didn't feel well that day. I hadn't got round to rescheduling. The mammogram found enlarged lymph nodes. I called my oncologist. I already had a routine followup scheduled with him, the first one in quite a while, but it wasn't for another month and a half. I wondered if I should see him sooner.
I got a call from the Imaging center to schedule a CT scan, which I thought was to reschedule the one I'd canceled. Then they told me it had been ordered by my oncologist. That worried me. I got more worried when he left me a voicemail message to tell me he suspected the lymphoma was back. I spent a weekend feeling pretty anxious as I worried about what my treatment would be this time and whether I'd be able to work during chemo. The oncologist told me this time I won't have to do inpatient treatment; I can go to the chemo infusion center once a month for my treatments. The treatment shouldn't be as hard on me this time. If this had happened three years ago, the treatment I'll be having wouldn't have existed. This time I'll get Rituxan again, combined with a new drug called Bendamustine.
When I read the potential side effects of both drugs, they're the same: nausea, vomiting, constipation, diarrhea, fatigue, loss of appetite. The same stuff I went through last time. Chemo is largely composed of giving you poisons to kill the cancer cells. Unfortunately, that means killing some good stuff as well.
I have a biopsy tomorrow to confirm that it's really lymphoma. I start chemo on October 10th.
I'm still scared, but I'm not as scared as I was. I have a good doctor, and a great team of other medical professionals looking after me. My doctor thinks my prognosis is good for another full remission, though it probably won't last as long this time.
Everyone knows there is no cure for cancer. But until I had cancer myself, I didn't really understand what that meant. The variety of lymphoma I have almost always reoccurs. It's just a waiting game to see when it will come back yet again. And each time it will get harder to treat, harder to force into remission.
When I found out that I had cancer, I thought about my parents. Neither of them lived past age 60. My father was only 53. I'll be 52 in a month. I've often wondered if I will live past 60, either. I'll just have to wait and see. I feel optimistic. Not only will I be less isolated this time, I know someone else who's going through a similar situation and somehow that makes me feel less alone. And I have someone who loves me and will look after me, and great friends, and coworkers who are kind and caring. There's a lot to be said for a good support system.
Deep breaths. I got through it last time, I can do it again.
Yes, that's right, I have cancer right now, and it's not my first entry in the cancer rodeo. That sounds pretty scary, doesn't it? It is scary. Cancer is scary. Cancer treatment is scary, too.
Nearly 10 years ago, I went in for surgery to have an ovarian fibroid removed. I had no thought of cancer, really. My doctor didn't think the fibroid was cancerous. It wasn't. But while the surgeon was looking at my innards, she noticed that I had some enlarged lymph nodes. She removed one and sent it for a biopsy.
I remember when I was told that I had cancer, I thought the doctor meant that I had ovarian cancer. I guess I was a little muddled after the surgery. What I had was Non-Hodgkin Lymphoma. Not just any old lymphoma, but an uncommon variety, Mantle Cell Lymphoma, that more typically affects people 20 years older than I was at the time. If you're interested in reading more about it, try here
They sent me home to recover from the surgery. I'd waited too long to have surgery and they couldn't do it laparoscopically, which in hindsight was a good thing. If they had done it as a laparascopy they probably wouldn't have found the cancer. My cancer history is a story of fortuitous coincidences like that, as I'll explain later.
I spent eight weeks healing from the surgery. Once I had recuperated, I started chemo treatments. They put me on a regimen called Hyper-CVAD-MTX/AraC supplemented by Rituxan. I think the Hyper stands for Hyper-intense. I had to have my treatments in the hospital, a week each month for eight months. I usually spent a couple of additional days in the hospital after the treatment was done, while they gave me blood or plasma transfusions and tried to get my white cell count back up.
I didn't throw up a lot, after they spent a lot of time finding the right anti-nausea medication. One medication they tried was Haldol, an anti-psychotic. Cancer treatment involves a lot of using medications for purposes for which they weren't originally intended. Haldol gave me weird muscle spasms in my neck. I couldn't stop turning my head to the left.
I also completely lost my appetite and stopped eating. My doctor had to prescribe an appetite-enhancing medication. I hated taking it, but it worked. Along with the anti-nausea meds and the appetite enhancer, I had to take a whole fleet of antibiotics, anti-fungals, steroids, drugs to counteract the side effects of the steroids, drugs to protect my kidneys from other drugs, drugs to prevent allergic reactions to the chemo drugs. My beneficial intestinal flora died and the less beneficial ones overpopulated, so that as Jay Lake put it, it was "like winning the toilet paper lottery". Every hair on my entire body fell out, not just my scalp hair but my eyebrows and lashes and even my nostril hair.
I was off work for a year. By the time I finished treatment, I could barely walk. I lost 40 or 50 pounds. I couldn't concentrate enough to read a book or watch an entire movie. I had become very isolated, seeing no one but the nurses and my doctor, and my Significant Other. My immune system was too weak to allow me to go out in public much, and I was too weak to visit with my friends, even on the phone.
During that time I learned a lot of things about cancer treatment I'd never known, despite the fact that both of my parents died of cancer. I didn't know that chemo can cause so many effects on the brain when it's not even being given for brain cancer. Chemo patients learn about something called "chemo brain", which describes how thick-headed you get on chemo. I don't remember some things that happened just before my treatment began, and my memories of that time period are foggy. That's chemo brain.
A month ago I went in for a routine mammogram. I'd recently been having a lot of health problems, which don't have any relevancy to the mammogram, but it's important to the overall story. My primary care had ordered a CT scan for me earlier, to look at my lungs, but I'd had to cancel because I didn't feel well that day. I hadn't got round to rescheduling. The mammogram found enlarged lymph nodes. I called my oncologist. I already had a routine followup scheduled with him, the first one in quite a while, but it wasn't for another month and a half. I wondered if I should see him sooner.
I got a call from the Imaging center to schedule a CT scan, which I thought was to reschedule the one I'd canceled. Then they told me it had been ordered by my oncologist. That worried me. I got more worried when he left me a voicemail message to tell me he suspected the lymphoma was back. I spent a weekend feeling pretty anxious as I worried about what my treatment would be this time and whether I'd be able to work during chemo. The oncologist told me this time I won't have to do inpatient treatment; I can go to the chemo infusion center once a month for my treatments. The treatment shouldn't be as hard on me this time. If this had happened three years ago, the treatment I'll be having wouldn't have existed. This time I'll get Rituxan again, combined with a new drug called Bendamustine.
When I read the potential side effects of both drugs, they're the same: nausea, vomiting, constipation, diarrhea, fatigue, loss of appetite. The same stuff I went through last time. Chemo is largely composed of giving you poisons to kill the cancer cells. Unfortunately, that means killing some good stuff as well.
I have a biopsy tomorrow to confirm that it's really lymphoma. I start chemo on October 10th.
I'm still scared, but I'm not as scared as I was. I have a good doctor, and a great team of other medical professionals looking after me. My doctor thinks my prognosis is good for another full remission, though it probably won't last as long this time.
Everyone knows there is no cure for cancer. But until I had cancer myself, I didn't really understand what that meant. The variety of lymphoma I have almost always reoccurs. It's just a waiting game to see when it will come back yet again. And each time it will get harder to treat, harder to force into remission.
When I found out that I had cancer, I thought about my parents. Neither of them lived past age 60. My father was only 53. I'll be 52 in a month. I've often wondered if I will live past 60, either. I'll just have to wait and see. I feel optimistic. Not only will I be less isolated this time, I know someone else who's going through a similar situation and somehow that makes me feel less alone. And I have someone who loves me and will look after me, and great friends, and coworkers who are kind and caring. There's a lot to be said for a good support system.
Deep breaths. I got through it last time, I can do it again.
Subscribe to:
Posts (Atom)