I don’t think anything quite prepares someone to hear the word “cancer” dropped into normal conversation. This is especially true for conversations involving someone you know. It’s as if someone has turned off the music and turned on the lights. Everything that appeared glamorous suddenly seems cold, distant, and isolating.
Depending on the party involved, there isn’t always a good way to vocalize your feelings because you are just stunned. It’s easy to think in panic: cancer doesn’t happen to someone I know, it happens to other people.
It all becomes very real, very quick.
Now on the other side of it, I notice how even in my own speech patterns, I can’t always bring myself to say “cancer”. It’s interesting to see how many euphemisms can be substituted for the word. Further, sometimes I feel like a jackass if I flit around the truth. Sometimes I feel like a jackass when I have to use “cancer” as an explanation.
I have noticed that there is a certain amount of grace necessary to navigate cancer as a term.
Cancer is a loaded word. It’s an identity. It contains memories and flashbacks, thoughts and feelings. It’s an association and a description. In day-to-day vocabulary, we all know it has a negative connotation.
When I’ve used the word, the variety of reactions hardly astounds me. Sometimes it’s greeted with hopeful grimaces. Sometimes pity. Sometimes, brushed off and not even acknowledged, like I’ve just informed the person that I have a paper cut: “oh, that’s too bad”.
Each of us deals with the cancer bomb a different way, but when it goes off, it smells like fear and dread.
It’s sad that as a society, because of what it represents, cancer is an explanation of its own. As I’ve been navigating issues related to working, school, and finances, using the cancer card has had its benefits. In a small way, it’s nice that the majority of people understand, and they don’t require me to explain why I feel a certain way a certain time of day.
By no means do I want to use the cancer card to make other people feel bad or to get my way (see the jackass comments above), but there are times when it’s the only description that is adequate.
As in, I’m not trying to be a pain in the ass: I have cancer.
When I go to my oncologist, I see other patients and it’s amazing to me that you can tell who has been touched or traumatized by cancer. Sure, there are visual cues, like missing hair, but it’s in their eyes.
It’s remarkable how they don’t look sad, just resigned to what is happening, at peace about their progress, and hopeful about their fate.
Rarely do I see anger and it’s the compassion I feel from other patients that gets me choked up. It makes me want to be stronger for not only myself, but my cancer peers as well.
No one wants to sign up for cancer voluntarily. But, perhaps holding onto the cancer card isn’t so negative and awful as we perceive.
Friday, April 22, 2011
Monday, April 18, 2011
Food and music
Nausea and sour stomach are normal side effects of chemo, but there are some interesting things I’ve noticed about my own eating habits in the recent weeks.
For starters, one moment, something will sound delicious and the next, absolutely disgusting. It changes day to day and the rigmarole could even include my favorite foods.
My taste buds are shot; though a dietician told me that sour generally will taste the same for people, so sucking on lemons before eating a meal will help someone maintain a “normal” palate.
I’m probably not stretching the truth by saying that food and psychology go hand in hand. Why is it watching a commercial on bacon will be tempting to a carnivore and horrifying to a vegetarian? There are moments when the food becomes art and psychology in commercials.
For example, in one heavily mass-produced commercial stereotype, a chocolate chip cookie is broken apart in a close-up oh-so-gently to exploit the gooeyness of the chocolate chips and is given by a mom to her children.
Oh! I get it. Mom made those cookies for her kids. The happy kids are ingesting chocolate chip cookies that are gooey. Since they are happy, gooey cookies must be good. That particular brand’s gooey cookies must be good. And then I want one. And so forth.
My cravings are hardly as direct these days, but I have noticed an interesting phenomenon.
I’m one of those people that attach memories to music (like most people) and if I made a compilation years ago and suddenly put the CD in my car, I’ll remember the exact order of the songs. I refuse to listen to certain songs if the memories are depressing.
Today, I was listening to The Beach Boys, on a lark, because 1) I’m on a Mad Men kick and therefore music from the 60s, 2) The Beach Boys, despite their issues with depravity, have such infectious music, and 3) I’m looking forward to summer.
Here is the weird part: I’m listening to the music and I’m reminded of my childhood in California. Yes, I was a bit of a California kid stereotype: a cute blonde kid with a light golden tan and permanent windburn. While we didn’t live close to the ocean, it was only a few hours away. I then begin associating California with things that did not necessarily occur in my childhood or adulthood visits to the state, for that matter (perhaps all those Sonic commercials?):
Warm sunshine, rollerskating on the boardwalk, milkshakes, grilling on the beach, happy people, sparkly water, the smell of ocean air, sand between the toes, running and splashing into the water with clothes on and shoes off…I’m transported to a happy place.
And here’s the shocking part: I’m hungry. I suddenly begin craving milkshakes and burgers.
Whiskey tango foxtrot?!
For the duration of the morning, I had hardly eaten a thing, pushing some mashed potatoes around in a bowl and consuming a glass of soy milk just so I could take some damn pill and now I’m hungry after listening to The Beach Boys?
I’m blown away at the psychology of it.
Is it because of the association I made between the music and food? Is it the commercialization of food and how its psychology affects our choices?
Further, how the heck can a cancer patient who had no appetite suddenly make a 180 and become hungry after listening to songs that have memories, pseudo and real, attached to them?
I’ll leave that for everyone to ponder.
As they say with the priceless and ageless Tootsie Pop commercial: the world may never know.
For starters, one moment, something will sound delicious and the next, absolutely disgusting. It changes day to day and the rigmarole could even include my favorite foods.
My taste buds are shot; though a dietician told me that sour generally will taste the same for people, so sucking on lemons before eating a meal will help someone maintain a “normal” palate.
I’m probably not stretching the truth by saying that food and psychology go hand in hand. Why is it watching a commercial on bacon will be tempting to a carnivore and horrifying to a vegetarian? There are moments when the food becomes art and psychology in commercials.
For example, in one heavily mass-produced commercial stereotype, a chocolate chip cookie is broken apart in a close-up oh-so-gently to exploit the gooeyness of the chocolate chips and is given by a mom to her children.
Oh! I get it. Mom made those cookies for her kids. The happy kids are ingesting chocolate chip cookies that are gooey. Since they are happy, gooey cookies must be good. That particular brand’s gooey cookies must be good. And then I want one. And so forth.
My cravings are hardly as direct these days, but I have noticed an interesting phenomenon.
I’m one of those people that attach memories to music (like most people) and if I made a compilation years ago and suddenly put the CD in my car, I’ll remember the exact order of the songs. I refuse to listen to certain songs if the memories are depressing.
Today, I was listening to The Beach Boys, on a lark, because 1) I’m on a Mad Men kick and therefore music from the 60s, 2) The Beach Boys, despite their issues with depravity, have such infectious music, and 3) I’m looking forward to summer.
Here is the weird part: I’m listening to the music and I’m reminded of my childhood in California. Yes, I was a bit of a California kid stereotype: a cute blonde kid with a light golden tan and permanent windburn. While we didn’t live close to the ocean, it was only a few hours away. I then begin associating California with things that did not necessarily occur in my childhood or adulthood visits to the state, for that matter (perhaps all those Sonic commercials?):
Warm sunshine, rollerskating on the boardwalk, milkshakes, grilling on the beach, happy people, sparkly water, the smell of ocean air, sand between the toes, running and splashing into the water with clothes on and shoes off…I’m transported to a happy place.
And here’s the shocking part: I’m hungry. I suddenly begin craving milkshakes and burgers.
Whiskey tango foxtrot?!
For the duration of the morning, I had hardly eaten a thing, pushing some mashed potatoes around in a bowl and consuming a glass of soy milk just so I could take some damn pill and now I’m hungry after listening to The Beach Boys?
I’m blown away at the psychology of it.
Is it because of the association I made between the music and food? Is it the commercialization of food and how its psychology affects our choices?
Further, how the heck can a cancer patient who had no appetite suddenly make a 180 and become hungry after listening to songs that have memories, pseudo and real, attached to them?
I’ll leave that for everyone to ponder.
As they say with the priceless and ageless Tootsie Pop commercial: the world may never know.
Saturday, April 16, 2011
Break it down
I definitely have my good days and my bad days. After the first treatment, I began to understand how it ebbs and flows. There are a lot of euphemisms that can be attached the feelings.
It’s like surfing.
Or it’s like being on a rollercoaster.
Or it’s like a storm with sparkly clean days to follow.
The days right after chemo aren’t so bad. The days following those days: lots of fatigue, sleeping, and soreness from the antibody shots. Then the depression sets in. It’s not necessarily depression manufactured within the recesses of my own hormones and chemicals. It feels different from the “bummed out” days. I have to remind myself that chemo makes you depressed. My mantra for those days? It’s the meds, it’s not you.
Or, as we have begun saying in my family: fuck the meds, I just want a happy day.
The plan is to cross-stitch this onto a pillow or something. Perhaps, I’ll make a t-shirts and be one of a few that understands its meaning.
To a certain extent, I was lonely when working full time and completing graduate classes, because I was always busy. I had no social life. I had moved away from some of my friends and it became harder to call them up or join in activities at the last minute. I would be excited to have an outing at a restaurant because it would be outside the norm.
Now, it’s a different kind of lonely: the kind of lonely where I’m forced to think about things that I wanted to avoid. For example, I’m a patient person with other people, but with myself, I’m my own worst critic. Being left to my own devices is a bit devastating because I feel so unproductive.
It’s hard because I want to put on a brave face for the people I care about. I want them to feel the success of my treatment as much as I do. But I also want to protect them from seeing me at my worst or when I’m down. This is probably the most difficult aspect of the cancer process, I’ve discovered. I like to think I’m a compassionate person and perhaps someone who puts other people before me. This situation has taken that away from me and forced me to take care of myself. I wonder why I have ignored this for so long.
I had a reaction to the first drug in my 2nd chemo treatment on Friday. The Rituxan helps antibodies and the nurse began to increase the rate that it was going into my body since my vitals were looking good. I began to have chills and started shaking. My mother, staying with me the entire duration of this chemo, began to look alarmed. The nurse and doctor were keeping a close watch on me and just stopped the IV to let my body recover. They covered me with blankets and I just sat there and shook for a while, though I couldn’t tell you for how long. My mom said my face went sheet white, blue veins began to appear in my face, and my lips began to turn bluish. Apparently, this was the reaction they were trying to avoid in the hospital during the first treatment. After my chills and subsequent fever subsided, the treatment continued.
I had a small amount of sadness to realize that I was the first person at the oncology center to arrive and the last one to leave.
For the rest of the day, my stomach felt sour and my taste buds were off (as usual), but I was reeling more from the realization of what just happened. In retrospect, it’s unnerving because of the psychology of the things they put into my body for the sake of killing off the mass. It affects my thoughts and I think that requires more recovery time than the actuality of the stuff inside of me.
Then again, it’s the meds, it’s not me.
So, in jumping off the depression train, I’m trying to create a list of happy thoughts in my head for the times when I feel down. I’m learning to meditate and center myself through all the fog and anxiety.
I would also like to start a little garden in the backyard. Just so I have something to work on and have the opportunity to watch something grow. Maybe it will placate some of my own dark thoughts and create something positive.
A reminder to myself: there are better days ahead.
It’s like surfing.
Or it’s like being on a rollercoaster.
Or it’s like a storm with sparkly clean days to follow.
The days right after chemo aren’t so bad. The days following those days: lots of fatigue, sleeping, and soreness from the antibody shots. Then the depression sets in. It’s not necessarily depression manufactured within the recesses of my own hormones and chemicals. It feels different from the “bummed out” days. I have to remind myself that chemo makes you depressed. My mantra for those days? It’s the meds, it’s not you.
Or, as we have begun saying in my family: fuck the meds, I just want a happy day.
The plan is to cross-stitch this onto a pillow or something. Perhaps, I’ll make a t-shirts and be one of a few that understands its meaning.
To a certain extent, I was lonely when working full time and completing graduate classes, because I was always busy. I had no social life. I had moved away from some of my friends and it became harder to call them up or join in activities at the last minute. I would be excited to have an outing at a restaurant because it would be outside the norm.
Now, it’s a different kind of lonely: the kind of lonely where I’m forced to think about things that I wanted to avoid. For example, I’m a patient person with other people, but with myself, I’m my own worst critic. Being left to my own devices is a bit devastating because I feel so unproductive.
It’s hard because I want to put on a brave face for the people I care about. I want them to feel the success of my treatment as much as I do. But I also want to protect them from seeing me at my worst or when I’m down. This is probably the most difficult aspect of the cancer process, I’ve discovered. I like to think I’m a compassionate person and perhaps someone who puts other people before me. This situation has taken that away from me and forced me to take care of myself. I wonder why I have ignored this for so long.
I had a reaction to the first drug in my 2nd chemo treatment on Friday. The Rituxan helps antibodies and the nurse began to increase the rate that it was going into my body since my vitals were looking good. I began to have chills and started shaking. My mother, staying with me the entire duration of this chemo, began to look alarmed. The nurse and doctor were keeping a close watch on me and just stopped the IV to let my body recover. They covered me with blankets and I just sat there and shook for a while, though I couldn’t tell you for how long. My mom said my face went sheet white, blue veins began to appear in my face, and my lips began to turn bluish. Apparently, this was the reaction they were trying to avoid in the hospital during the first treatment. After my chills and subsequent fever subsided, the treatment continued.
I had a small amount of sadness to realize that I was the first person at the oncology center to arrive and the last one to leave.
For the rest of the day, my stomach felt sour and my taste buds were off (as usual), but I was reeling more from the realization of what just happened. In retrospect, it’s unnerving because of the psychology of the things they put into my body for the sake of killing off the mass. It affects my thoughts and I think that requires more recovery time than the actuality of the stuff inside of me.
Then again, it’s the meds, it’s not me.
So, in jumping off the depression train, I’m trying to create a list of happy thoughts in my head for the times when I feel down. I’m learning to meditate and center myself through all the fog and anxiety.
I would also like to start a little garden in the backyard. Just so I have something to work on and have the opportunity to watch something grow. Maybe it will placate some of my own dark thoughts and create something positive.
A reminder to myself: there are better days ahead.
Tuesday, April 12, 2011
This is your brain on chemo
In 1998, there was a memorable Public Service Announcement for a Drug-Free America starring Rachael Leigh Cook in which she smashed her way around a kitchen with a frying pan demonstrating how drugs affects lives. I doubt the line “any questions?” has ever been said with such memorable authority.
No doubt there were dozens of PSAs that I’ve managed to remember over the years, some of which still have influenced me.
Note: if you lived in California in the early 90s, you will recall a water shortage due to severe drought conditions. There were days when you were to “shower with a friend,” which believe it or not wasn’t an effort created by the porn industry. There was also the PSA in which a little kid is brushing his teeth and leaving the water faucet on while doing so. The camera cuts to a fish in the ocean, with the ocean water level going further and further down before cutting back to the kid who is still carelessly letting the water faucet go while brushing his teeth.
This PSA created a harbor of water conservation paranoia in me since then.
Recalling PSA comparisons of splattered fried eggs to drug-addled brains, I cannot help but see a connection to my own current state.
It is a mildly humorous thought that chemicals and narcotics are drained and fed into my body under the guise of shrinking a lung mass and killing off mutated cells.
Aren’t these the things that people would do recreationally that we’ve been told our entire lives not to do?
In completing research about the side effects of chemotherapy, there is one phenomenon called “chemo fog,” which also includes a few other terms including “chemo brain.” Essentially, there is a lack of mental clarity when undergoing chemo, which includes short-term memory loss, difficulty in remembering details, lack of multi-tasking skills, feeling disorganized, forgetting words, and just “spacing out” (see this link for other fun facts).
The scarier part about this phenomenon is that doctors do not understand why this occurs.
Let’s review.
We are not surprised that hitting one’s head in an accident could possibly cause cognitive impairment or irreversible damage to the brain. However, it’s unknown why there is a lack of lucidity after pumping a human with toxic chemicals that are killing off cells, including healthy good ones?
Perhaps in my own chemo fog, I find this concept ludicrous: a big fat “duh”.
So, have I experienced any of the effects of “chemo fog”? The answer is a resounding yes. Or, let’s just say, if there were a time for blonde jokes, this would be it.
I feel like myself but off.
Not remembering the day of the week? I blame it on chemo fog, not sheer laziness.
Writing things down in my day planner because appointments come into my head, don’t process fully, and then float back out? I call it a good habit for a brain that doesn’t want to hold as much anymore.
Going downstairs for something, then forgetting what it was, going back upstairs, remembering, and then going downstairs again? Chemo fog AND exercise.
According to The Chemotherapy Survival Guide by Judith McKay and Tamera Schacher, a theory is that “chemotherapy can cause direct toxic injury to brain cells.” This book is an interesting resource and even includes a chapter with a section devoted to chemo fog. While it’s not a comforting topic, it’s a positive step that researchers are devoting time to finding ways to prevent cognitive impairment due to chemotherapy.
So, remember kids, don’t do drugs (unless the doctors specifically instruct you to do so). Many cells within our bodies reproduce, but brain cells are the highfaluting bastards that just want to keep to themselves, not reproduce, die alone, and leave you cognitively stranded.
If Rachael Leigh Cook was doing a PSA for “chemo fog,” she’d thrash around the kitchen with a frying pan, but she’d then misplace the pan and forget what she was doing.
This is your brain on chemo.
What was I supposed to do Friday again…?
Postscript: You might be wondering how I can write all these blogs without sounding like a Neanderthal. Since I’m a library student who writes research papers, I’m a stickler for good prose. With my own “chemo fog,” I review my writing multiple times to ensure that what I say makes sense and is structured in an orderly manner. I even complete them first in MS Word, then copy and paste the words into a blog posting. Admittedly, there are times when I publish one, I’ll review it and find flaws. Call me a perfectionist, but this is how I function.
No doubt there were dozens of PSAs that I’ve managed to remember over the years, some of which still have influenced me.
Note: if you lived in California in the early 90s, you will recall a water shortage due to severe drought conditions. There were days when you were to “shower with a friend,” which believe it or not wasn’t an effort created by the porn industry. There was also the PSA in which a little kid is brushing his teeth and leaving the water faucet on while doing so. The camera cuts to a fish in the ocean, with the ocean water level going further and further down before cutting back to the kid who is still carelessly letting the water faucet go while brushing his teeth.
This PSA created a harbor of water conservation paranoia in me since then.
Recalling PSA comparisons of splattered fried eggs to drug-addled brains, I cannot help but see a connection to my own current state.
It is a mildly humorous thought that chemicals and narcotics are drained and fed into my body under the guise of shrinking a lung mass and killing off mutated cells.
Aren’t these the things that people would do recreationally that we’ve been told our entire lives not to do?
In completing research about the side effects of chemotherapy, there is one phenomenon called “chemo fog,” which also includes a few other terms including “chemo brain.” Essentially, there is a lack of mental clarity when undergoing chemo, which includes short-term memory loss, difficulty in remembering details, lack of multi-tasking skills, feeling disorganized, forgetting words, and just “spacing out” (see this link for other fun facts).
The scarier part about this phenomenon is that doctors do not understand why this occurs.
Let’s review.
We are not surprised that hitting one’s head in an accident could possibly cause cognitive impairment or irreversible damage to the brain. However, it’s unknown why there is a lack of lucidity after pumping a human with toxic chemicals that are killing off cells, including healthy good ones?
Perhaps in my own chemo fog, I find this concept ludicrous: a big fat “duh”.
So, have I experienced any of the effects of “chemo fog”? The answer is a resounding yes. Or, let’s just say, if there were a time for blonde jokes, this would be it.
I feel like myself but off.
Not remembering the day of the week? I blame it on chemo fog, not sheer laziness.
Writing things down in my day planner because appointments come into my head, don’t process fully, and then float back out? I call it a good habit for a brain that doesn’t want to hold as much anymore.
Going downstairs for something, then forgetting what it was, going back upstairs, remembering, and then going downstairs again? Chemo fog AND exercise.
According to The Chemotherapy Survival Guide by Judith McKay and Tamera Schacher, a theory is that “chemotherapy can cause direct toxic injury to brain cells.” This book is an interesting resource and even includes a chapter with a section devoted to chemo fog. While it’s not a comforting topic, it’s a positive step that researchers are devoting time to finding ways to prevent cognitive impairment due to chemotherapy.
So, remember kids, don’t do drugs (unless the doctors specifically instruct you to do so). Many cells within our bodies reproduce, but brain cells are the highfaluting bastards that just want to keep to themselves, not reproduce, die alone, and leave you cognitively stranded.
If Rachael Leigh Cook was doing a PSA for “chemo fog,” she’d thrash around the kitchen with a frying pan, but she’d then misplace the pan and forget what she was doing.
This is your brain on chemo.
What was I supposed to do Friday again…?
Postscript: You might be wondering how I can write all these blogs without sounding like a Neanderthal. Since I’m a library student who writes research papers, I’m a stickler for good prose. With my own “chemo fog,” I review my writing multiple times to ensure that what I say makes sense and is structured in an orderly manner. I even complete them first in MS Word, then copy and paste the words into a blog posting. Admittedly, there are times when I publish one, I’ll review it and find flaws. Call me a perfectionist, but this is how I function.
Statistics
Note: This is a small selection of material I have found in researching Non-Hodgkins Lymphoma and all my sources are cited at the bottom.
Statistics and notations, specifically causal or relational ones, for Non-Hodgkins Lymphoma are not lengthy or descriptive. The information scientist in me is not satisfied with this information, so I’ve been doing some digging.
According to Frederick Hagemeister, M.D., professor in the Department of Lymphoma and Myeloma, in MD Anderson’s Fall 2010 Network newsletter:
“We’re not yet sure, but we suspect that some forms of lymphoma may have a genetic disposition, not in terms of inheriting the disease, but perhaps in inheriting a type of immune deficiency, for example. Other possible causes include environmental factors, such as exposure to pesticides and herbicides, and certain viruses, although these causes are rare.”1
I already understand that in order for cancer to occur, you need just one mutated cell to duplicate and the domino effect lets loose.
My doctor and general collective cancer intelligence all say not to prioritize time in discovering what causes cancer. In my professional life, I enjoy finding out answers for patrons and customers. What would make my own situation any different?
Non-Hodgkins Lymphoma is a fairly common type of cancer in the United States. According to the Leukemia and Lymphoma Society, Non-Hodgkins Lymphoma is the seventh most common type of cancer.
For patients with Hodgkins Lymphoma, the number of incidences in adults between the ages of 20-34 and those above the age of 65 are higher than for the adults between the ages of 35 and 64.
However, for patients with Non-Hodgkins Lymphoma (like me), the rise of incidence appears almost exponential with age. From 2003-2007, for adults between the ages of 25 and 29, there were 330,000 cases of Non-Hogkins Lymphoma, which is a small percentage compared to the millions of cases for adults ages 75 and older. 2
According to MD Anderson:
“Over 66,000 adults and children will be diagnosed with non-Hodgkin's lymphoma this year. Over 95% of those cases will be adults around 60 years of age. Men have a slightly higher risk than women, although the numbers of women being diagnosed with non-Hodgkin's lymphoma has recently been increasing. Non-Hodgkin's lymphoma is more common in whites than African Americans or Asian Americans.”3
Part of me looks as this information and thinks I must be in a very small percentage of incidences. I would be in the 5% of adults not around 60 years of age. I am female, though while the numbers are increasing, women tend to have a lower risk than males. I am technically 5/8 white, with the remainder of my ethnic background as Asian and Native American, populations that have a lower risk of developing Non-Hodgkins Lymphoma.
As an interesting family history side note, there are no known cases of cancer on my father’s side of the family. On my mother’s side of the family, there are incidences of cancer, but it’s not prevalent.
I refuse to blame something authentic or arbitrary as the reason I have cancer. However, if I have a genetic predisposition to getting cancer or have an immune system deficiency, I want to know how this will affect my future. If, in fact this was caused by environmental factors, what are they? Are there people like me who could use this information as prevention?
I know that much research exists in discovering the causes behind Lymphoma, especially Non-Hodgkins Lymphoma. I know I won’t be able to add anything extraordinary to this research. For my own information curiosity, I’m collecting all the puzzle pieces in my own medical and personal history.
There is a small amount of paranoia I feel: will this come back after all the treatments are complete? If it is a genetic disposition, can I pass this onto my children (assuming I can even have children after all this)?
I can’t shake off the concept that my future has irrevocably been altered. However, I don’t want to look at it like a bad thing. I look at it as an opportunity to get more tools to keep living the life I want. I might or might not be a statistic, but I truly believe things happen for a reason. With all the sad and terrible things that happen in our daily lives, this seems like a futile belief. I think that sometimes you have to find the proverbial light at the end of the tunnel. Sometimes you have to make your own sunshine.
If you surround yourself with positive thoughts and wonderful people, what could go wrong?
1 MD Anderson Fall 2010 Focus on Non-Hodgkins Lymphoma
2 The Leukemia & Lymphoma Society Facts 2010-2011
3 MD Anderson Non-Hodgkins Lymphoma Patient Information
Statistics and notations, specifically causal or relational ones, for Non-Hodgkins Lymphoma are not lengthy or descriptive. The information scientist in me is not satisfied with this information, so I’ve been doing some digging.
According to Frederick Hagemeister, M.D., professor in the Department of Lymphoma and Myeloma, in MD Anderson’s Fall 2010 Network newsletter:
“We’re not yet sure, but we suspect that some forms of lymphoma may have a genetic disposition, not in terms of inheriting the disease, but perhaps in inheriting a type of immune deficiency, for example. Other possible causes include environmental factors, such as exposure to pesticides and herbicides, and certain viruses, although these causes are rare.”1
I already understand that in order for cancer to occur, you need just one mutated cell to duplicate and the domino effect lets loose.
My doctor and general collective cancer intelligence all say not to prioritize time in discovering what causes cancer. In my professional life, I enjoy finding out answers for patrons and customers. What would make my own situation any different?
Non-Hodgkins Lymphoma is a fairly common type of cancer in the United States. According to the Leukemia and Lymphoma Society, Non-Hodgkins Lymphoma is the seventh most common type of cancer.
For patients with Hodgkins Lymphoma, the number of incidences in adults between the ages of 20-34 and those above the age of 65 are higher than for the adults between the ages of 35 and 64.
However, for patients with Non-Hodgkins Lymphoma (like me), the rise of incidence appears almost exponential with age. From 2003-2007, for adults between the ages of 25 and 29, there were 330,000 cases of Non-Hogkins Lymphoma, which is a small percentage compared to the millions of cases for adults ages 75 and older. 2
According to MD Anderson:
“Over 66,000 adults and children will be diagnosed with non-Hodgkin's lymphoma this year. Over 95% of those cases will be adults around 60 years of age. Men have a slightly higher risk than women, although the numbers of women being diagnosed with non-Hodgkin's lymphoma has recently been increasing. Non-Hodgkin's lymphoma is more common in whites than African Americans or Asian Americans.”3
Part of me looks as this information and thinks I must be in a very small percentage of incidences. I would be in the 5% of adults not around 60 years of age. I am female, though while the numbers are increasing, women tend to have a lower risk than males. I am technically 5/8 white, with the remainder of my ethnic background as Asian and Native American, populations that have a lower risk of developing Non-Hodgkins Lymphoma.
As an interesting family history side note, there are no known cases of cancer on my father’s side of the family. On my mother’s side of the family, there are incidences of cancer, but it’s not prevalent.
I refuse to blame something authentic or arbitrary as the reason I have cancer. However, if I have a genetic predisposition to getting cancer or have an immune system deficiency, I want to know how this will affect my future. If, in fact this was caused by environmental factors, what are they? Are there people like me who could use this information as prevention?
I know that much research exists in discovering the causes behind Lymphoma, especially Non-Hodgkins Lymphoma. I know I won’t be able to add anything extraordinary to this research. For my own information curiosity, I’m collecting all the puzzle pieces in my own medical and personal history.
There is a small amount of paranoia I feel: will this come back after all the treatments are complete? If it is a genetic disposition, can I pass this onto my children (assuming I can even have children after all this)?
I can’t shake off the concept that my future has irrevocably been altered. However, I don’t want to look at it like a bad thing. I look at it as an opportunity to get more tools to keep living the life I want. I might or might not be a statistic, but I truly believe things happen for a reason. With all the sad and terrible things that happen in our daily lives, this seems like a futile belief. I think that sometimes you have to find the proverbial light at the end of the tunnel. Sometimes you have to make your own sunshine.
If you surround yourself with positive thoughts and wonderful people, what could go wrong?
1 MD Anderson Fall 2010 Focus on Non-Hodgkins Lymphoma
2 The Leukemia & Lymphoma Society Facts 2010-2011
3 MD Anderson Non-Hodgkins Lymphoma Patient Information
Monday, April 11, 2011
Everyday is (almost) the same
I begin each morning by taking my blood pressure, checking my blood-oxygen level and pulse, and finally my temperature. I created a table that allows me track all the numbers. I separate the day numbers with yellow cells and the night numbers with blue cells (because they look pretty).
I take a medication to help with stomach acid in the morning and one to maintain my uric acid in the evening. I have a slew of “as needed” medications. They sit in a small green bucket in the front hall. It’s like having my own pharmacy. Post chemo, there are more required medications to take, but the minimum is required for this week.
Keeping track of the pills is a bit unnatural for me. I had entered the hospital as someone who never took a daily medication, to someone who has a typed list with the hard-to-pronounce names, dosage, and milligrams. Also on the list are the chemotherapy drugs I receive.
I have utter insomnia and usually do not fall asleep until between midnight and 2 am. I typically wake up between 4 am and 6 am to use the toilet because all fluids move through me quickly. Then again, supposedly it’s a good thing, because it means I’m hydrated.
I don’t cough as much as I used to, which is a relief. I have a system of how I organize the pillows on my bed so that I can fall asleep comfortably and not cough in the middle of the night and wake myself up.
Even my cat has integrated his lifestyle with his newfound home, since I had to move back in with my parents. He hasn’t quite made friends with the other family cats and spends his nights in my bedroom. He mews pitifully at the other cats seemingly saying: “hey, I’m a nice guy!” Alas, they still run away and hide from him.
I had a giant sigh of relief after the doctor’s appointment prior to my upcoming 2nd chemotherapy. I’d been waiting for the results of my bone marrow biopsies and PET scan. I’ve also had my blood monitored every other day with the antibody injections and had watched my white blood cell count go from high to low back to high again throughout the week. The lab results handouts sit in small stack on my desk. They are the visualizations of me in blood cell form.
My body is finally maintaining a good percentage of white blood cells. My bone marrow biopsies came back negative, so I have no dormant cancer cells hiding out there. The PET scan indicated that I have cancer isolated in my lung. I'm grateful that in relative terms, this is a fairly straightforward cancer to treat.
Part of me is humored by the fact that I’m based on blood cells, numbers, and chemicals. The doctors look at the stuff that is being pumped into me and coming out of me.
In doing my own research about my particular cocktail of chemotherapies, I’ve discovered that I have the aggressive form of Non-Hodgkins Lymphoma, but I was not necessarily informed of this. I suppose I just knew it was important to get treated right away. I recall asking my doctor how long I had this mass in my lungs and he seemed to think only a few months. Considering its size, I was a bit shocked with this information. However, with lymphoma, aggressive forms are not necessarily bad. In fact, with the aggressive subtypes of lymphoma, chemotherapy can typically cure the cancer. Indolent (slow moving) types are difficult to monitor because it’s not always known how or where it will grow.
My particular cocktail of chemotherapy is affectionately named “R-CHOP”. To me, it sounds like something a pirate butcher might exclaim. It’s a weirdly cute abbreviation for a toxic chemical mixture.
The letters stand for the names of the drugs used in the treatments. For example, the "R" is Rituximab (Rituxan), which is used first before the other drugs to help the immune system. This was the drug that was first administered to me in the hospital, where I was monitored so closely by a nurse. I await this same mixture in the upcoming week for my second chemotherapy.
It’s still amazing to me that I had gone from girl with a cough to girl with cancer in little over a week. Though, time has flown by relatively quickly. Each day holds a different challenge. Just after my first chemo, it was getting out of the bed. This week, it’s unpacking my belongings and being with friends since I’m feeling better than I had prior to going to the hospital. I’m a bit nervous about the next chemo since I know I won’t be feeling so well after it’s done.
All in all, I’m just taking it one day at a time.
I take a medication to help with stomach acid in the morning and one to maintain my uric acid in the evening. I have a slew of “as needed” medications. They sit in a small green bucket in the front hall. It’s like having my own pharmacy. Post chemo, there are more required medications to take, but the minimum is required for this week.
Keeping track of the pills is a bit unnatural for me. I had entered the hospital as someone who never took a daily medication, to someone who has a typed list with the hard-to-pronounce names, dosage, and milligrams. Also on the list are the chemotherapy drugs I receive.
I have utter insomnia and usually do not fall asleep until between midnight and 2 am. I typically wake up between 4 am and 6 am to use the toilet because all fluids move through me quickly. Then again, supposedly it’s a good thing, because it means I’m hydrated.
I don’t cough as much as I used to, which is a relief. I have a system of how I organize the pillows on my bed so that I can fall asleep comfortably and not cough in the middle of the night and wake myself up.
Even my cat has integrated his lifestyle with his newfound home, since I had to move back in with my parents. He hasn’t quite made friends with the other family cats and spends his nights in my bedroom. He mews pitifully at the other cats seemingly saying: “hey, I’m a nice guy!” Alas, they still run away and hide from him.
I had a giant sigh of relief after the doctor’s appointment prior to my upcoming 2nd chemotherapy. I’d been waiting for the results of my bone marrow biopsies and PET scan. I’ve also had my blood monitored every other day with the antibody injections and had watched my white blood cell count go from high to low back to high again throughout the week. The lab results handouts sit in small stack on my desk. They are the visualizations of me in blood cell form.
My body is finally maintaining a good percentage of white blood cells. My bone marrow biopsies came back negative, so I have no dormant cancer cells hiding out there. The PET scan indicated that I have cancer isolated in my lung. I'm grateful that in relative terms, this is a fairly straightforward cancer to treat.
Part of me is humored by the fact that I’m based on blood cells, numbers, and chemicals. The doctors look at the stuff that is being pumped into me and coming out of me.
In doing my own research about my particular cocktail of chemotherapies, I’ve discovered that I have the aggressive form of Non-Hodgkins Lymphoma, but I was not necessarily informed of this. I suppose I just knew it was important to get treated right away. I recall asking my doctor how long I had this mass in my lungs and he seemed to think only a few months. Considering its size, I was a bit shocked with this information. However, with lymphoma, aggressive forms are not necessarily bad. In fact, with the aggressive subtypes of lymphoma, chemotherapy can typically cure the cancer. Indolent (slow moving) types are difficult to monitor because it’s not always known how or where it will grow.
My particular cocktail of chemotherapy is affectionately named “R-CHOP”. To me, it sounds like something a pirate butcher might exclaim. It’s a weirdly cute abbreviation for a toxic chemical mixture.
The letters stand for the names of the drugs used in the treatments. For example, the "R" is Rituximab (Rituxan), which is used first before the other drugs to help the immune system. This was the drug that was first administered to me in the hospital, where I was monitored so closely by a nurse. I await this same mixture in the upcoming week for my second chemotherapy.
It’s still amazing to me that I had gone from girl with a cough to girl with cancer in little over a week. Though, time has flown by relatively quickly. Each day holds a different challenge. Just after my first chemo, it was getting out of the bed. This week, it’s unpacking my belongings and being with friends since I’m feeling better than I had prior to going to the hospital. I’m a bit nervous about the next chemo since I know I won’t be feeling so well after it’s done.
All in all, I’m just taking it one day at a time.
Tuesday, April 5, 2011
The girl with two brains
One week out of the hospital and the days have blurred together into a mess of aches, tears, laughs, and appointments.
The Monday following my release, I was injected with radioactive glucose for a PET scan to check all of my lymph nodes. Much to my disappointment, I did not become Spiderman or a Teenage Mutant Ninja Turtle, no matter how much I questioned that validity with the technician.
Somehow I think my youth and sarcasm amuse all the people working at the Oncology Center. There is no doubt in my mind that I stick out. If my mom accompanies me to an appointment, other patients glance between her and me and I can tell they are assessing: who is the patient? When the nurse calls my name and I stand up, eyebrows raise. I don’t know if it’s surprise or pity I detect. Then again, I look like an unkempt teenager most of the time now, so they might be regarding my appearance instead.
A few days later, the same tech that had administered the PET scan teases me: “aren’t there other places you’d like to hang out than here?” I smile sheepishly and sit in the waiting room awaiting another blood test, another shot.
The antibody shots are a unique addition to my days. Injected into my belly, they force my body to produce white blood cells. The first one made me feel a bit tender all over. The second one the next day made my entire body feel like it was having all out war. I could barely move and it hurt to cough. I finally took a pain pill to fall asleep.
Nurses at the Oncology Center completed the first few injections since I was trying to get my insurance company to release a set at my local pharmacy. Finally, after phone calls on my behalf and doctor authorizations, I have a box of injections overnighted to me through a mail order company. Apparently this is the only way I am to receive them.
The package is finally delivered at the end of the week and I’m not entirely sure what to expect inside, just that I know this isn’t Christmas in April.
The package begins like a ridiculous Russian nesting doll. After getting through the tape, there are Styrofoam chunks to remove to get to the center. Reaching further, there are ice packs surrounding a small box. The size would be perfect for holding chocolate truffles, except it is holding 10 small containers, each enclosed with an injection. The orange plastic casing around each injection has a friendly quality to it like: hey, I could be a pen. Though, in reality, it’s the guard that is pulled up to cover the needle when discarding it into the handy red biohazard container included in the box. Instructions and alcohol prep pads complete the set.
I’m fairly certain my family is one of only a few that has a box of injections sitting behind the bottles of ketchup and mustard in the fridge.
The first day I’m to inject myself, I situate myself in the bathroom with the biohazard box, the injection, a prep pad, and the instructions.
I open up the instructions like a roadmap and it’s clear that brevity was not the goal in creating this particular pamphlet. I’m reminded of when I first began coloring my hair as a teenager. I had opened up the instructions and read the directions word for word, then inspected the bottles and plastic gloves included.
I wish I were only coloring my hair at this moment.
I’m elated when I finally see the diagrams that show how it works (visuals!). After swabbing my belly with the prep pad, pulling off the cap and exposing the needle, I sit poised, trying to aim at myself.
“I can’t do this,” I say aloud.
And then I have an utter meltdown: tears and screaming.
You know how they say not to drive angry? It’s probably good advice to not inject yourself when having a meltdown.
As a disclaimer: it’s not a painful shot by any consideration. I think at that moment, I was frustrated by having to think through both parts. There is the me that is experiencing the shot and bracing herself. Then there is the other me that is performing the shot and making sure she doesn’t screw it up. Having to be both are very conflicting feelings to say the least.
I finally calm down enough and just finish the job. Relieved, I dump the injection into the biohazard box and put everything away. Tired from being upset, I crawl into bed and stare off into space.
The next day, I wake up with a bit of trepidation because I know I have to do another injection. My dad says he’ll help me, but I refuse saying that now I know how to do it.
Prepped again with needle poised, I have another meltdown and hand the injection over to my dad. It’s like two guys deciding who is going to shoot.
Dad: “I’ll do it.”
Me: “No, I’ll do it, I know I can do it.”
Dad: “Ok, you do it.”
(Pause)
Me: “I can’t do it, you do it.”
And so forth.
So, we have decided as a family that I will have a Needle Buddy and that person is my dad. Just like in Finding Nemo:
“First, you need an Exit Buddy. Do you have your Exit Buddy?”
Except in my case:
“Do you have your Needle Buddy?”
(My dad raises his hand).
I prep everything and just hand over the injection and it makes the process that much easier. No more frustration about having to think through both parts.
I still sometimes have dualistic feelings post-chemotherapy, but apparently this is normal. Some days are just better than others.
But I’ll save those for other stories…
The Monday following my release, I was injected with radioactive glucose for a PET scan to check all of my lymph nodes. Much to my disappointment, I did not become Spiderman or a Teenage Mutant Ninja Turtle, no matter how much I questioned that validity with the technician.
Somehow I think my youth and sarcasm amuse all the people working at the Oncology Center. There is no doubt in my mind that I stick out. If my mom accompanies me to an appointment, other patients glance between her and me and I can tell they are assessing: who is the patient? When the nurse calls my name and I stand up, eyebrows raise. I don’t know if it’s surprise or pity I detect. Then again, I look like an unkempt teenager most of the time now, so they might be regarding my appearance instead.
A few days later, the same tech that had administered the PET scan teases me: “aren’t there other places you’d like to hang out than here?” I smile sheepishly and sit in the waiting room awaiting another blood test, another shot.
The antibody shots are a unique addition to my days. Injected into my belly, they force my body to produce white blood cells. The first one made me feel a bit tender all over. The second one the next day made my entire body feel like it was having all out war. I could barely move and it hurt to cough. I finally took a pain pill to fall asleep.
Nurses at the Oncology Center completed the first few injections since I was trying to get my insurance company to release a set at my local pharmacy. Finally, after phone calls on my behalf and doctor authorizations, I have a box of injections overnighted to me through a mail order company. Apparently this is the only way I am to receive them.
The package is finally delivered at the end of the week and I’m not entirely sure what to expect inside, just that I know this isn’t Christmas in April.
The package begins like a ridiculous Russian nesting doll. After getting through the tape, there are Styrofoam chunks to remove to get to the center. Reaching further, there are ice packs surrounding a small box. The size would be perfect for holding chocolate truffles, except it is holding 10 small containers, each enclosed with an injection. The orange plastic casing around each injection has a friendly quality to it like: hey, I could be a pen. Though, in reality, it’s the guard that is pulled up to cover the needle when discarding it into the handy red biohazard container included in the box. Instructions and alcohol prep pads complete the set.
I’m fairly certain my family is one of only a few that has a box of injections sitting behind the bottles of ketchup and mustard in the fridge.
The first day I’m to inject myself, I situate myself in the bathroom with the biohazard box, the injection, a prep pad, and the instructions.
I open up the instructions like a roadmap and it’s clear that brevity was not the goal in creating this particular pamphlet. I’m reminded of when I first began coloring my hair as a teenager. I had opened up the instructions and read the directions word for word, then inspected the bottles and plastic gloves included.
I wish I were only coloring my hair at this moment.
I’m elated when I finally see the diagrams that show how it works (visuals!). After swabbing my belly with the prep pad, pulling off the cap and exposing the needle, I sit poised, trying to aim at myself.
“I can’t do this,” I say aloud.
And then I have an utter meltdown: tears and screaming.
You know how they say not to drive angry? It’s probably good advice to not inject yourself when having a meltdown.
As a disclaimer: it’s not a painful shot by any consideration. I think at that moment, I was frustrated by having to think through both parts. There is the me that is experiencing the shot and bracing herself. Then there is the other me that is performing the shot and making sure she doesn’t screw it up. Having to be both are very conflicting feelings to say the least.
I finally calm down enough and just finish the job. Relieved, I dump the injection into the biohazard box and put everything away. Tired from being upset, I crawl into bed and stare off into space.
The next day, I wake up with a bit of trepidation because I know I have to do another injection. My dad says he’ll help me, but I refuse saying that now I know how to do it.
Prepped again with needle poised, I have another meltdown and hand the injection over to my dad. It’s like two guys deciding who is going to shoot.
Dad: “I’ll do it.”
Me: “No, I’ll do it, I know I can do it.”
Dad: “Ok, you do it.”
(Pause)
Me: “I can’t do it, you do it.”
And so forth.
So, we have decided as a family that I will have a Needle Buddy and that person is my dad. Just like in Finding Nemo:
“First, you need an Exit Buddy. Do you have your Exit Buddy?”
Except in my case:
“Do you have your Needle Buddy?”
(My dad raises his hand).
I prep everything and just hand over the injection and it makes the process that much easier. No more frustration about having to think through both parts.
I still sometimes have dualistic feelings post-chemotherapy, but apparently this is normal. Some days are just better than others.
But I’ll save those for other stories…
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