I'm worried about my insurability, whenever I move back to the States.
This is what another cancer survivor wrote to me about insurance.
"The deal with breast cancer: When you have been treated for early stage breast cancer, you have a 10% (stage 1) to 20% (stage 2) of metastatic recurrence in the 10 years after treatment. Once you have been clean for ten years, you are statistically 'cured'. Your odds of developing a new cancer are the same as the general population. So between the time the doctors declare that you have "no evidence of disease" and the time that you have been clean for 10 years, you are ineligible for a new individual health insurance policy (at least one that will treat breast cancer, its complications, or a recurrence). After the 10 year mark, getting a policy is the same as anyone else."
"This is generally bad news for breast cancer survivors, especially since many women want to make a work change after surviving breast cancer. There is a work around, however. This ineligibility applies only to individual policies. You can still get a group policy (i.e., through an employer). Some of the women in my support group have done the following: they hire a part time employee or create a firm with other part-time freelancers, then they get a group policy for their company or firm. You only need one other person to create a group plan. And if you work part time for a company, you are still eligible for health insurance and they can't question your health history."
"Please note that different types of cancer have different remission periods. For lymphoma you may be considered statistically 'cured' after less than 10 years. I don't know what that number is. I learned what little I know on the subject from my support group for young breast cancer survivors. You should eventually find a lymphoma group or a young survivors group (i.e., Young Survival Coalition) to help you navigate the issue."
I hunted around on the net and found some young survivor's groups. None that are specific to non-Hodgkin's lymphoma, let alone my particular type of non-Hodgkin's lymphoma (which only affects 2% of all patients with non-Hodgkin's lymphoma). Here are the links:
www.seventyk.org
www.imtooyoungforthis.org
www.planetcancer.org
www.fertilehope.org
I haven't checked out any of them yet, but I plan to do so soon. Whew, I could really spend weeks and weeks just doing research on my cancer, it seems. My brain already feels overloaded from all the information I'm cramming in.
Monday, April 27, 2009
Treatment Adjustments
Two days before every chemo infusion, I have a half-hour appointment with my doctor to review the results from the last chemo cycle.
Doctor Leeksma was quite pleased with the round 1 results. In fact, he even used the word "impressive". I told him that all outward signs of the tumor disappeared by Day 3 and I stopped taking pain medications by Day 5. He checked the site of the lump himself and didn't see any evidence that there was ever anything there, except for the small scar where they inserted the biopsy needle.
I told him that I suffered from nausea for 10 days, as well as non-stop burping for a few of those 10 days, and he indicated that they might be able to fix that.
My new regimen is:
100 mg Prednisolone every morning to kill tumor cells
1 Granisetron (Kytrol) tablet morning and evening to be taken against nausea and vomiting twice a day for the first 3 days in the chemo cycle
Metoclopramide HCl 3 x a day to be taken for nausea after Chemo Day 3
500 mg Magnesium Hydrochloride PCH with every meal for constipation
40 mg Pantecta every morning for acid reflux and burping
So basically, compared to the previous cycle, we dropped the Allopurinol, which he said was no longer needed because I did not appear to have any kidney reactions, and added Pantecta, which would help with the nausea.
This particular combination appears to be the winning one. I was nauseous only on the first day, but that was probably because I took the Granisetron late and didn't take the Pantecta at all. The following days, I had slight nausea in the morning but hardly any nausea for the rest of the day. The main issues I experience now are hyperactivity and sleeplessness (from the prednisolone) and residual coughing. I tried to get a prescription for codeine so I could sleep at night, but the doctor recommended that I avoid cough medications if I can. And it turns out that the coughing is not so bad now.
Besides the drug changes, we also spent some time discussing the further course of treatment. My brother told me that in the States, they would probably have done a PET scan and full CT scan at the beginning of treatment and after the third cycle.
My doc says he plans to order a full CT after the 4th chemo cycle. If after the 8th cycle, there's still residual tumor, he will order a PET scan to make sure that it's not active. It seems like they don't generally do PETs here as much as they do in the States, which may be a cost or radiation issue. I asked my brother later if he thought I should be more assertive in asking for an earlier PET scan. His (paraphrased) reply was:
"Let me run this by one of my attendings. As a standard, we do PET scans or gallium scans (functional imaging) prior to starting treatment and then repeat until it's negative. I can't say that he's doing anything wrong because there are few studies for this lymphoma. In other tumors, we would consider changing therapy if the PET didn't become negative after 4 cycles. We would even consider changing after 2 cycles if there wasn't significant improvement. I feel the problem with waiting until after 8 cycles is mainly that you have no prior scans for comparison, and the PET scan is overly sensitive and sometimes you can't tell what is tumor and what's not or what's new and what's old."
After his reply, I felt better because I'm confident that the current treatment is working just fine and doesn't need to be changed.
Yesterday, I was doing some research on the internet and stumbled on an article that seemed to indicate other regimens (e.g., MACOPB) combined with radiation produced the best results for mediastinal diffuse large B-cell lymphoma. I asked my brother about this too:
"I did look at these studies. Most people in the US would use R-CHOP. Those other regimens are not commonly used in the US. These regimens are probably more common in Europe, where they tend to favor stronger chemo regimens. There's not an obvious advantage for the more intensive regimens and have the price of higher toxicity and some require hospital stays for a few days to get the chemo in. Additionally, none of those regimens used Rituxan which should improve outcomes significantly. My attending, who has over 20 years of experience with lymphomas, would use R-CHOP."
"The radiation is a different story. I'm not sure how big the tumor was before starting chemo, but we tend to use radiation if it was big. We would probably use 6 cycles of R-CHOP followed by radiation. The drawbacks to radiation are that it can cause future health problems, such as early coronary heart disease, damage to the lungs, etc., although they carefully monitor how much radiation you actually receive. It seems that your doctor is using an extra 2 cycles of RCHOP in lieu of radiation because you're young and he doesn't want to cause long term problems with radiation. Difficult to say if this is right or wrong because we don't have the studies to tell us. These are more subtleties of medicine which you can argue for either side. I can only tell you what my attendings or I would do."
Again, I felt reassured after this explanation, as I remember that my doctor specifically stated he would prefer that we try chemo instead of surgery or radiation because I'm still young and both have such damaging long-term effects.
Doctor Leeksma was quite pleased with the round 1 results. In fact, he even used the word "impressive". I told him that all outward signs of the tumor disappeared by Day 3 and I stopped taking pain medications by Day 5. He checked the site of the lump himself and didn't see any evidence that there was ever anything there, except for the small scar where they inserted the biopsy needle.
I told him that I suffered from nausea for 10 days, as well as non-stop burping for a few of those 10 days, and he indicated that they might be able to fix that.
My new regimen is:
100 mg Prednisolone every morning to kill tumor cells
1 Granisetron (Kytrol) tablet morning and evening to be taken against nausea and vomiting twice a day for the first 3 days in the chemo cycle
Metoclopramide HCl 3 x a day to be taken for nausea after Chemo Day 3
500 mg Magnesium Hydrochloride PCH with every meal for constipation
40 mg Pantecta every morning for acid reflux and burping
So basically, compared to the previous cycle, we dropped the Allopurinol, which he said was no longer needed because I did not appear to have any kidney reactions, and added Pantecta, which would help with the nausea.
This particular combination appears to be the winning one. I was nauseous only on the first day, but that was probably because I took the Granisetron late and didn't take the Pantecta at all. The following days, I had slight nausea in the morning but hardly any nausea for the rest of the day. The main issues I experience now are hyperactivity and sleeplessness (from the prednisolone) and residual coughing. I tried to get a prescription for codeine so I could sleep at night, but the doctor recommended that I avoid cough medications if I can. And it turns out that the coughing is not so bad now.
Besides the drug changes, we also spent some time discussing the further course of treatment. My brother told me that in the States, they would probably have done a PET scan and full CT scan at the beginning of treatment and after the third cycle.
My doc says he plans to order a full CT after the 4th chemo cycle. If after the 8th cycle, there's still residual tumor, he will order a PET scan to make sure that it's not active. It seems like they don't generally do PETs here as much as they do in the States, which may be a cost or radiation issue. I asked my brother later if he thought I should be more assertive in asking for an earlier PET scan. His (paraphrased) reply was:
"Let me run this by one of my attendings. As a standard, we do PET scans or gallium scans (functional imaging) prior to starting treatment and then repeat until it's negative. I can't say that he's doing anything wrong because there are few studies for this lymphoma. In other tumors, we would consider changing therapy if the PET didn't become negative after 4 cycles. We would even consider changing after 2 cycles if there wasn't significant improvement. I feel the problem with waiting until after 8 cycles is mainly that you have no prior scans for comparison, and the PET scan is overly sensitive and sometimes you can't tell what is tumor and what's not or what's new and what's old."
After his reply, I felt better because I'm confident that the current treatment is working just fine and doesn't need to be changed.
Yesterday, I was doing some research on the internet and stumbled on an article that seemed to indicate other regimens (e.g., MACOPB) combined with radiation produced the best results for mediastinal diffuse large B-cell lymphoma. I asked my brother about this too:
"I did look at these studies. Most people in the US would use R-CHOP. Those other regimens are not commonly used in the US. These regimens are probably more common in Europe, where they tend to favor stronger chemo regimens. There's not an obvious advantage for the more intensive regimens and have the price of higher toxicity and some require hospital stays for a few days to get the chemo in. Additionally, none of those regimens used Rituxan which should improve outcomes significantly. My attending, who has over 20 years of experience with lymphomas, would use R-CHOP."
"The radiation is a different story. I'm not sure how big the tumor was before starting chemo, but we tend to use radiation if it was big. We would probably use 6 cycles of R-CHOP followed by radiation. The drawbacks to radiation are that it can cause future health problems, such as early coronary heart disease, damage to the lungs, etc., although they carefully monitor how much radiation you actually receive. It seems that your doctor is using an extra 2 cycles of RCHOP in lieu of radiation because you're young and he doesn't want to cause long term problems with radiation. Difficult to say if this is right or wrong because we don't have the studies to tell us. These are more subtleties of medicine which you can argue for either side. I can only tell you what my attendings or I would do."
Again, I felt reassured after this explanation, as I remember that my doctor specifically stated he would prefer that we try chemo instead of surgery or radiation because I'm still young and both have such damaging long-term effects.
Sunday, April 26, 2009
Hair Loss, Part II
I've decided that I won't look half-bad as a bald chick.
And my new look is slowly coming together.
My recommendations regarding hair loss to those who are starting chemo:
1. Don't do what I did and pay 60 euros to a top-stylist to get all your hair chopped short, unless you have plenty of money to burn. It is good to get it chopped short, but get a friend to do it for free because it turns out that the hair, if it's going to fall out (for some people, it doesn't), tends to shed like crazy already between the 12th and 18th day of the first chemo treatment. This usually happens most noticeably in the shower.
2. When this starts to happen, start immediately planning your new on-treatment look. I procrastinated a bit too long and ended up not washing my hair for DAYS because I didn't have my new look ready and still wanted to go out in public as a normal person and not as a cancer patient.
3. I highly recommend going to a neighborhood salon to get a complete shave (explain your situation and ask them if they can do something for you after-hours with the curtains closed; maybe you'll find it's no big deal, but it could also be more traumatic than you expect) or get someone to help you do it at home. I didn't go to a salon because I had already spent 60 euros on my hair just a few weeks before and figured that it wouldn't be so bad to have the hair fall out when it was so short. True that the shorter hair probably helped, but I still had way more hair to lose than I expected, as I didn't get a military buzz cut. I still had layered hair in the front down to my chin: a very stylish cut that lasted in its original form approximately 1 week.
4. I regretted not going bald sooner because my hair kept falling out in my bed and on the bathroom floor and in my food. Ugh. Also, when it does come out in the shower (and especially after not washing your hair for 4 days so that the hair is really READY to dive out of your scalp), it feels extremely creepy for it to clump up in your hand and get stuck to your body and pile up on the shower floor. I didn't cry, but I did have to recite all the things I was grateful for and keep my eyes closed while almost all of the rest of my hair fell out. I also had to take three showers in a row and emerge with lobster-red skin and pruney fingers at the end.
5. I found out that high-quality wigs are not hot and itchy like the wigs you buy at the costume store for Halloween. They are also very expensive (500-600 euros here in Amsterdam) and my insurance only covers 250 of that. I tried on a bunch; they all looked a little weird to me, especially on top, but I might be able to style them so they look more natural. We narrowed it down to three choices at the wig shop, one of which I wanted to see in a darker color, and they will come to my apartment for free after it arrives so I can try on the three again. I was told that shorter wigs are generally better because they are far less likely to get caught on things like sofas and jacket zippers. You apparently have to be really careful that they don't get pulled off or twisted.
6. But, there's also another cool option that was invented in Amsterdam, of all places! (lucky me again!) It's called a toupim: www.toupim.nl (you can click on a link on the home page for an English translation of the site) and it only costs 95 euros compared to the 500+ for a full wig. I had a lot of fun with this because I narrowed my options down to four and then emailed all my female friends to have them vote on which look they thought would suit me best. It was great because I got all kinds of advice and found out about clip-on hair extensions (http://www.headkandy.com/), which aren't too expensive and that I can add to my toupim when I'm feeling in the mood for a little jazzy color. I can attest to the fact that the hair is high quality and the hair band is very comfortable. I wish there was a little more hair framing the face in the style that I got (half-long Jasmijn) but I'm hoping that the hair extensions will help with that when I get them. Also, I must say that the customer service has been impeccable. I ordered my toupim online on a Friday evening, and it arrived special delivery (the owner apparently biked it over on her way home from work) one hour later. I emailed on Sunday if I could exchange it for a different size and the owner emailed me back the same night to say that would be fine; she'll drop by tomorrow to perform the exchange.
7. I fully intend to shave the rest of my hair off myself as soon as I get my wig (it's supposed to come today). Lurking on the Young Survivor's Coalition website (it's targeted for breast cancer survivors, but I find it helpful anyway), I learned that once you shave it, there will be stubble and the best way to clean off the stubble is with a lint roller!
And my new look is slowly coming together.
My recommendations regarding hair loss to those who are starting chemo:
1. Don't do what I did and pay 60 euros to a top-stylist to get all your hair chopped short, unless you have plenty of money to burn. It is good to get it chopped short, but get a friend to do it for free because it turns out that the hair, if it's going to fall out (for some people, it doesn't), tends to shed like crazy already between the 12th and 18th day of the first chemo treatment. This usually happens most noticeably in the shower.
2. When this starts to happen, start immediately planning your new on-treatment look. I procrastinated a bit too long and ended up not washing my hair for DAYS because I didn't have my new look ready and still wanted to go out in public as a normal person and not as a cancer patient.
3. I highly recommend going to a neighborhood salon to get a complete shave (explain your situation and ask them if they can do something for you after-hours with the curtains closed; maybe you'll find it's no big deal, but it could also be more traumatic than you expect) or get someone to help you do it at home. I didn't go to a salon because I had already spent 60 euros on my hair just a few weeks before and figured that it wouldn't be so bad to have the hair fall out when it was so short. True that the shorter hair probably helped, but I still had way more hair to lose than I expected, as I didn't get a military buzz cut. I still had layered hair in the front down to my chin: a very stylish cut that lasted in its original form approximately 1 week.
4. I regretted not going bald sooner because my hair kept falling out in my bed and on the bathroom floor and in my food. Ugh. Also, when it does come out in the shower (and especially after not washing your hair for 4 days so that the hair is really READY to dive out of your scalp), it feels extremely creepy for it to clump up in your hand and get stuck to your body and pile up on the shower floor. I didn't cry, but I did have to recite all the things I was grateful for and keep my eyes closed while almost all of the rest of my hair fell out. I also had to take three showers in a row and emerge with lobster-red skin and pruney fingers at the end.
5. I found out that high-quality wigs are not hot and itchy like the wigs you buy at the costume store for Halloween. They are also very expensive (500-600 euros here in Amsterdam) and my insurance only covers 250 of that. I tried on a bunch; they all looked a little weird to me, especially on top, but I might be able to style them so they look more natural. We narrowed it down to three choices at the wig shop, one of which I wanted to see in a darker color, and they will come to my apartment for free after it arrives so I can try on the three again. I was told that shorter wigs are generally better because they are far less likely to get caught on things like sofas and jacket zippers. You apparently have to be really careful that they don't get pulled off or twisted.
6. But, there's also another cool option that was invented in Amsterdam, of all places! (lucky me again!) It's called a toupim: www.toupim.nl (you can click on a link on the home page for an English translation of the site) and it only costs 95 euros compared to the 500+ for a full wig. I had a lot of fun with this because I narrowed my options down to four and then emailed all my female friends to have them vote on which look they thought would suit me best. It was great because I got all kinds of advice and found out about clip-on hair extensions (http://www.headkandy.com/), which aren't too expensive and that I can add to my toupim when I'm feeling in the mood for a little jazzy color. I can attest to the fact that the hair is high quality and the hair band is very comfortable. I wish there was a little more hair framing the face in the style that I got (half-long Jasmijn) but I'm hoping that the hair extensions will help with that when I get them. Also, I must say that the customer service has been impeccable. I ordered my toupim online on a Friday evening, and it arrived special delivery (the owner apparently biked it over on her way home from work) one hour later. I emailed on Sunday if I could exchange it for a different size and the owner emailed me back the same night to say that would be fine; she'll drop by tomorrow to perform the exchange.
7. I fully intend to shave the rest of my hair off myself as soon as I get my wig (it's supposed to come today). Lurking on the Young Survivor's Coalition website (it's targeted for breast cancer survivors, but I find it helpful anyway), I learned that once you shave it, there will be stubble and the best way to clean off the stubble is with a lint roller!
Saturday, April 25, 2009
Identity
I have a new identity now: cancer patient. I've only been a cancer patient for less than a month, but already I feel as though this identity has taken over my life. Almost every minute of every day is occupied with cancer: preparing myself for treatment, taking medications, answering people's questions, sending updates, researching on the internet, planning healthy anti-cancer meals, making appointments, going to appointments, fighting side effects. Every phone caller and emailer wants to know how I'm doing with the treatment. Every invitation to do something has to be checked against my chemo schedule and weighed against the risk of overfatigue and catching an infection. The only escapes from cancer, cancer, cancer are sleep, movies, and books.
The worst part is that even after I'm cured, I'll always be a cancer survivor. I'll never be able to blithely eat a piece of barbequed chicken again without worrying about the carcinogens. All of my lifestyle decisions will be made with the risk of recurrence on my mind. I'll have to worry about job discrimination and health insurance, and possibly also how to adapt to chronic long-term effects of chemo and radiation. Many survivors report both chemo side effects that persist long after chemo is over, such as fatigue and cognitive problems. And almost everyone reports that they were changed permanently by the experience, although many seem to say that they are changed for the better. I hope I will be able to say that in the end.
The cancer patient identity feels different from my other identities, as an Asian-American female, as a snowboarder, as an expat, as a manager, as a daughter, as a sister. I'm not aware of those identities all the time. I only really feel them when I am facing discrimination, or with snowboarders, or with other expats, or at work, or with my family. But being a cancer patient feels like a 24-7 role. I'm obsessed with it at the moment. Even as I'm watching a movie or a book, in the back of my mind, I'm still very conscious that I'm doing it purposely to distract myself from my condition. And if cancer or chronic illness or death from illness is mentioned in the movie or book, then my brain automatically starts comparing how the character's situation is similar or different to mine.
It's hard to believe that one month ago, I didn't even know what non-Hodgkin's lymphoma was.
The worst part is that even after I'm cured, I'll always be a cancer survivor. I'll never be able to blithely eat a piece of barbequed chicken again without worrying about the carcinogens. All of my lifestyle decisions will be made with the risk of recurrence on my mind. I'll have to worry about job discrimination and health insurance, and possibly also how to adapt to chronic long-term effects of chemo and radiation. Many survivors report both chemo side effects that persist long after chemo is over, such as fatigue and cognitive problems. And almost everyone reports that they were changed permanently by the experience, although many seem to say that they are changed for the better. I hope I will be able to say that in the end.
The cancer patient identity feels different from my other identities, as an Asian-American female, as a snowboarder, as an expat, as a manager, as a daughter, as a sister. I'm not aware of those identities all the time. I only really feel them when I am facing discrimination, or with snowboarders, or with other expats, or at work, or with my family. But being a cancer patient feels like a 24-7 role. I'm obsessed with it at the moment. Even as I'm watching a movie or a book, in the back of my mind, I'm still very conscious that I'm doing it purposely to distract myself from my condition. And if cancer or chronic illness or death from illness is mentioned in the movie or book, then my brain automatically starts comparing how the character's situation is similar or different to mine.
It's hard to believe that one month ago, I didn't even know what non-Hodgkin's lymphoma was.
Thursday, April 23, 2009
If it's not one thing, it's another: Part II
It's my last day of Chemo, Round 1. Tomorrow I begin anew. A good time to fill in the remaining details of the first cycle.
Day 18: Heavy cough leading to sleeplessness, slight neuropathy (my arm falling asleep a few times)
Day 19: Heavy cough leading to sleeplessness, slight neuropathy, major hair loss (you don't realize how vain you are, until you lose more than half your volume of hair in the shower)
Day 20: Heavy cough leading to sleeplessness, more shedding
Day 21: More shedding, still coughing, and menstrual cramps! 4 days late. Some people lose their periods during chemo. Of course, that's just about the only side effect I didn't have during this cycle.
In other words, I haven't had a day without some sort of symptom since around March 15 -- March 1, if you count the lump.
Day 18: Heavy cough leading to sleeplessness, slight neuropathy (my arm falling asleep a few times)
Day 19: Heavy cough leading to sleeplessness, slight neuropathy, major hair loss (you don't realize how vain you are, until you lose more than half your volume of hair in the shower)
Day 20: Heavy cough leading to sleeplessness, more shedding
Day 21: More shedding, still coughing, and menstrual cramps! 4 days late. Some people lose their periods during chemo. Of course, that's just about the only side effect I didn't have during this cycle.
In other words, I haven't had a day without some sort of symptom since around March 15 -- March 1, if you count the lump.
Sunday, April 19, 2009
If it's not one thing, it's another
It's Day 17 after my first chemo. Every day, I have a different set of side effects and symptoms. There's always at least one thing happening with my body although after Day 9, the problems became more irritating than serious.
Here's a record of my side effects and symptoms starting from Day 1 of Chemo #1 (from memory, so the list may be slightly inaccurate):
Day 1: nausea, lightheadedness, fatigue, slight cough, pain at night, breakthrough pain during the day
Day 2: nausea, vomiting, lightheadedness, loss of appetite, fatigue, strange-tasting saliva, slight cough, pain at night, breakthrough pain during the day
Day 3: nausea, vomiting, lightheadedness, loss of appetite, fatigue, strange-tasting saliva, severe weight loss, constipation, slight cough, pain at night, breakthrough pain during the day
Day 4: nausea, lightheadedness, loss of appetite, fatigue, strange-tasting saliva, constipation, slight cough, breakthrough pain during the day, mouth sores
Day 5: nausea, lightheadedness, loss of appetite, fatigue, strange-tasting saliva, slight cough, breakthrough pain during the day, mouth sores
Day 6: nausea, lightheadedness, loss of appetite, fatigue, strange-tasting saliva, slight cough, breakthrough pain during the day, mouth sores
Day 7: nausea, lightheadedness, loss of appetite, fatigue, strange-tasting saliva, slight cough, breakthrough pain during the day, mouth sores
Day 8: nausea, loss of appetite, fatigue, strange-tasting saliva, slight cough, breakthrough pain during the day, mouth sores
Day 9: slight nausea, slight loss of appetite, slight fatigue, strange-tasting saliva, slight cough, breakthrough pain during the day, frequent burping and belching
Day 10: slight fatigue, strange-tasting saliva, slight cough, frequent burping and belching
Day 11: strange-tasting saliva, slight cough, frequent burping and belching
Day 12: heavy productive cough, heavy sniffling, less frequent burping and belching
Day 13: heavy productive cough, heavy sniffling, less frequent burping and belching
Day 14: heavy productive cough, heavy sniffling
Day 15: heavy productive cough, heavy sniffling
Day 16: heavy productive cough, heavy sniffling, mouth sore
Day 17: heavy productive cough, heavy sniffling, mouth sore
Days 18-21: what next?!
The nausea and loss of appetite were the worst side effects. I was afraid I would never enjoy food again, and I have always been one of those people who finds food one of the biggest pleasures in life.
Weirdly enough, the burping and belching was a close third. I was burping in continuous streams almost all day. My speech was studded with tiny burps, punctuated with an occasional hearty belch. On the days when I was both nauseous and burping, I could smell and taste the food I ate earlier in the day, but in a more toxic form, in the same way that a bag full of garbage that has been sitting in the sun releases a ripened odor of the leftover food that is in it. The involuntary constriction of the throat muscles is the same constriction that happens when vomiting, so every time I burped, I had the feeling that I was vomiting little bursts of noxious gas. This was especially true while my saliva still tasted strange; I was convinced that both my breath and burps smelled bad. Once my saliva became less alien, I was more able to appreciate the ridiculousness of it all and pictured myself as a comic strip character with blank conversation bubbles appearing and disappearing above my head.
During the burping period, I must have had a constantly startled look on my face. Imagine having irregularly-spaced hiccups for four days straight. Besides that, the burping was so impolite and so unhideable that I didn't want to go out in public. I didn't want to explain to complete strangers or (even worse!) to acquaintances who had no idea of my current health issues: "Sorry, I have cancer and burping seems to be one of the lesser-known side effects of my chemotherapy treatment" Or not explain and feel their curious or disgusted stares on my back. Only uncontrollable farting would be more humiliating.
The coughing and sniffling are also somewhat interesting items on the list. They are not cancer symptoms or side effects of the chemo. They are symptoms of a cold that became worse due to one of the side effects of chemo.
I had a minor cold since a few weeks before the start of treatment. In fact, I think that I caught it around the same time that I discovered the lump in my chest, which means that I've had it now for 7 weeks. Although it was always present, I barely noticed it because I had other things to worry about. Of all the "children", it was the quietest and easiest to ignore. But now, it's active and clamoring for attention. The symptoms worsened considerably in the past few days. Especially in the mornings and evenings, I now have violent coughing fits that sometimes last for several minutes and bring tears to my eyes. I've already blown my nose through two boxes of tissues. The cold became strong because my immune system is weak.
In every chemo cycle, there is always a predictable dip in white blood cell count, which the Dutch name the "dip period". The literature I received from the hospital estimates that the dip period will occur roughly between the 10th and 15th days after each chemo infusion. Strangely enough, the Americans seem to believe that this period, which they don't seem to have an official name for, occurs between the 7th and 10th day. Is there a difference in the chemo dosages that could result in differences in cycle characteristics?
During the dip period, I am more vulnerable to infection. I am to avoid going to places where large groups of people congregate, taking public transportation, accepting fresh flowers, or doing anything that could result in a cut or a scrape. I am also to avoid eating: raw meat, raw fish, raw tofu, undercooked egg (e.g., no sunny-side ups), peanuts, certain cheeses, unpasteurized dairy products, homemade jams, any raw vegetables or fruit that are unwashed or difficult to properly wash (such as broccoli), fresh salads prepared in restaurants. It's hard not to become paranoid. I guess it's not so bad; otherwise, my doctors would force me to live in a plastic bubble.
Here's a record of my side effects and symptoms starting from Day 1 of Chemo #1 (from memory, so the list may be slightly inaccurate):
Day 1: nausea, lightheadedness, fatigue, slight cough, pain at night, breakthrough pain during the day
Day 2: nausea, vomiting, lightheadedness, loss of appetite, fatigue, strange-tasting saliva, slight cough, pain at night, breakthrough pain during the day
Day 3: nausea, vomiting, lightheadedness, loss of appetite, fatigue, strange-tasting saliva, severe weight loss, constipation, slight cough, pain at night, breakthrough pain during the day
Day 4: nausea, lightheadedness, loss of appetite, fatigue, strange-tasting saliva, constipation, slight cough, breakthrough pain during the day, mouth sores
Day 5: nausea, lightheadedness, loss of appetite, fatigue, strange-tasting saliva, slight cough, breakthrough pain during the day, mouth sores
Day 6: nausea, lightheadedness, loss of appetite, fatigue, strange-tasting saliva, slight cough, breakthrough pain during the day, mouth sores
Day 7: nausea, lightheadedness, loss of appetite, fatigue, strange-tasting saliva, slight cough, breakthrough pain during the day, mouth sores
Day 8: nausea, loss of appetite, fatigue, strange-tasting saliva, slight cough, breakthrough pain during the day, mouth sores
Day 9: slight nausea, slight loss of appetite, slight fatigue, strange-tasting saliva, slight cough, breakthrough pain during the day, frequent burping and belching
Day 10: slight fatigue, strange-tasting saliva, slight cough, frequent burping and belching
Day 11: strange-tasting saliva, slight cough, frequent burping and belching
Day 12: heavy productive cough, heavy sniffling, less frequent burping and belching
Day 13: heavy productive cough, heavy sniffling, less frequent burping and belching
Day 14: heavy productive cough, heavy sniffling
Day 15: heavy productive cough, heavy sniffling
Day 16: heavy productive cough, heavy sniffling, mouth sore
Day 17: heavy productive cough, heavy sniffling, mouth sore
Days 18-21: what next?!
The nausea and loss of appetite were the worst side effects. I was afraid I would never enjoy food again, and I have always been one of those people who finds food one of the biggest pleasures in life.
Weirdly enough, the burping and belching was a close third. I was burping in continuous streams almost all day. My speech was studded with tiny burps, punctuated with an occasional hearty belch. On the days when I was both nauseous and burping, I could smell and taste the food I ate earlier in the day, but in a more toxic form, in the same way that a bag full of garbage that has been sitting in the sun releases a ripened odor of the leftover food that is in it. The involuntary constriction of the throat muscles is the same constriction that happens when vomiting, so every time I burped, I had the feeling that I was vomiting little bursts of noxious gas. This was especially true while my saliva still tasted strange; I was convinced that both my breath and burps smelled bad. Once my saliva became less alien, I was more able to appreciate the ridiculousness of it all and pictured myself as a comic strip character with blank conversation bubbles appearing and disappearing above my head.
During the burping period, I must have had a constantly startled look on my face. Imagine having irregularly-spaced hiccups for four days straight. Besides that, the burping was so impolite and so unhideable that I didn't want to go out in public. I didn't want to explain to complete strangers or (even worse!) to acquaintances who had no idea of my current health issues: "Sorry, I have cancer and burping seems to be one of the lesser-known side effects of my chemotherapy treatment" Or not explain and feel their curious or disgusted stares on my back. Only uncontrollable farting would be more humiliating.
The coughing and sniffling are also somewhat interesting items on the list. They are not cancer symptoms or side effects of the chemo. They are symptoms of a cold that became worse due to one of the side effects of chemo.
I had a minor cold since a few weeks before the start of treatment. In fact, I think that I caught it around the same time that I discovered the lump in my chest, which means that I've had it now for 7 weeks. Although it was always present, I barely noticed it because I had other things to worry about. Of all the "children", it was the quietest and easiest to ignore. But now, it's active and clamoring for attention. The symptoms worsened considerably in the past few days. Especially in the mornings and evenings, I now have violent coughing fits that sometimes last for several minutes and bring tears to my eyes. I've already blown my nose through two boxes of tissues. The cold became strong because my immune system is weak.
In every chemo cycle, there is always a predictable dip in white blood cell count, which the Dutch name the "dip period". The literature I received from the hospital estimates that the dip period will occur roughly between the 10th and 15th days after each chemo infusion. Strangely enough, the Americans seem to believe that this period, which they don't seem to have an official name for, occurs between the 7th and 10th day. Is there a difference in the chemo dosages that could result in differences in cycle characteristics?
During the dip period, I am more vulnerable to infection. I am to avoid going to places where large groups of people congregate, taking public transportation, accepting fresh flowers, or doing anything that could result in a cut or a scrape. I am also to avoid eating: raw meat, raw fish, raw tofu, undercooked egg (e.g., no sunny-side ups), peanuts, certain cheeses, unpasteurized dairy products, homemade jams, any raw vegetables or fruit that are unwashed or difficult to properly wash (such as broccoli), fresh salads prepared in restaurants. It's hard not to become paranoid. I guess it's not so bad; otherwise, my doctors would force me to live in a plastic bubble.
Another Gratitude List (with Thanks to Anonymous)
I am thankful for the taxes I pay because it means that I have money.
I am thankful for urgent deadlines and office politics because it means that I have a job.
I am thankful for my high rent because it means that I have a roof over my head and a warm bed at night.
I am thankful for the clothes that fit a little too snug because it means I have enough to eat.
I am thankful for the piles of laundry I have to do today because it means I have clothes to wear.
I am thankful for the crying baby in the apartment above me because it means I can hear.
I am thankful for the dark and dreary winter because it means that I can better appreciate spring and summer.
I am thankful for the rains that sweep over Amsterdam on a regular basis because it means that there is lush greenery everywhere in the warm months and that it is snowing somewhere else in Europe in the cold months.
I am thankful for people expressing political viewpoints that I don't agree with because it means we have freedom of speech.
I am thankful for my mother nagging me about what to eat and what to buy because it means that she cares.
I am thankful for my nausea, fatigue, and other chemo side effects, because it means that my cancer is treatable and that I can afford the treatment.
I am thankful for too much e-mail because it means I have friends who are thinking of me.
I am thankful to the anonymous parishoner of Clayfield Baptist Church who wrote the original list that has taught me and many others how to view the glass half FULL.
I am thankful for urgent deadlines and office politics because it means that I have a job.
I am thankful for my high rent because it means that I have a roof over my head and a warm bed at night.
I am thankful for the clothes that fit a little too snug because it means I have enough to eat.
I am thankful for the piles of laundry I have to do today because it means I have clothes to wear.
I am thankful for the crying baby in the apartment above me because it means I can hear.
I am thankful for the dark and dreary winter because it means that I can better appreciate spring and summer.
I am thankful for the rains that sweep over Amsterdam on a regular basis because it means that there is lush greenery everywhere in the warm months and that it is snowing somewhere else in Europe in the cold months.
I am thankful for people expressing political viewpoints that I don't agree with because it means we have freedom of speech.
I am thankful for my mother nagging me about what to eat and what to buy because it means that she cares.
I am thankful for my nausea, fatigue, and other chemo side effects, because it means that my cancer is treatable and that I can afford the treatment.
I am thankful for too much e-mail because it means I have friends who are thinking of me.
I am thankful to the anonymous parishoner of Clayfield Baptist Church who wrote the original list that has taught me and many others how to view the glass half FULL.
Saturday, April 18, 2009
Hair Loss
Today I had a small shock when, after my shower, I noticed there was so much hair blocking the drain that it took a few minutes for the water to disappear. Even when I had long hair, that never happened unless the drain was actually clogged.
Last weekend, I went to a pricey hair salon to have my hair cut very short for the first time in my life. I was nervous, because I always suspected that I would look like a boy with such a cut, but it turned out fine. My hair is now shag-carpet length in the back, stopping at the top of my neck. It's down to my chin in the front, with longish layers framing my face. It's quite a stylish cut.
Before the cut, my hair was super-thick and long, a few inches below my shoulders. I thought it would be too shocking (as well as messy) to have such long hair falling out, and I guess I was right. At least 4/5 of the volume was already cut away, so I can't imagine the hugeness of the hairball that would have been blocking my drain had I not had the haircut. Even with short hair, it was still a shock.
Luckily, having thick hair means that it might take at least a few weeks for it all to fall out. Looking in the mirror today, my hair doesn't look all that different. I read somewhere that the hair on my head will go first, then the eyebrows and the rest of my body. I'll be like a shorn sheep in a month or two. My insurance will pay for a wig, so I'll probably corral some girlfriends into coming with me on a wig-shopping expedition, followed by tea and cake at Taart van Mijn Tante -- a novel way to spend a Saturday afternoon in Amsterdam.
As I write this, I wonder if there would a market for a deck of cards called "52 Ways to Have Fun with Cancer". Decorate crackers with Cheeze Whiz smiley faces! For those days when you are too nauseous to eat anything else. Make art installations with all your hair that falls out! Cancer's a great opportunity to develop your creativity. Try tossing your pills in the air and catching them in your mouth! It's an exercise you can even do in bed.
3 down, only 49 more cards to think up.
Last weekend, I went to a pricey hair salon to have my hair cut very short for the first time in my life. I was nervous, because I always suspected that I would look like a boy with such a cut, but it turned out fine. My hair is now shag-carpet length in the back, stopping at the top of my neck. It's down to my chin in the front, with longish layers framing my face. It's quite a stylish cut.
Before the cut, my hair was super-thick and long, a few inches below my shoulders. I thought it would be too shocking (as well as messy) to have such long hair falling out, and I guess I was right. At least 4/5 of the volume was already cut away, so I can't imagine the hugeness of the hairball that would have been blocking my drain had I not had the haircut. Even with short hair, it was still a shock.
Luckily, having thick hair means that it might take at least a few weeks for it all to fall out. Looking in the mirror today, my hair doesn't look all that different. I read somewhere that the hair on my head will go first, then the eyebrows and the rest of my body. I'll be like a shorn sheep in a month or two. My insurance will pay for a wig, so I'll probably corral some girlfriends into coming with me on a wig-shopping expedition, followed by tea and cake at Taart van Mijn Tante -- a novel way to spend a Saturday afternoon in Amsterdam.
As I write this, I wonder if there would a market for a deck of cards called "52 Ways to Have Fun with Cancer". Decorate crackers with Cheeze Whiz smiley faces! For those days when you are too nauseous to eat anything else. Make art installations with all your hair that falls out! Cancer's a great opportunity to develop your creativity. Try tossing your pills in the air and catching them in your mouth! It's an exercise you can even do in bed.
3 down, only 49 more cards to think up.
Thursday, April 16, 2009
The Gratitude List
I'll probably keep updating this, as time goes on:
1. The cancer is treatable. The chemo works by attacking the fastest dividing cells in my body first (which is why people lose their hair). My cancer is especially treatable compared to other cancers because the tumor was growing so quickly. My brother told me, "the faster it grows, the faster it will shrink". And he was right. The lump had appeared seemingly overnight, and the lump had also disappeared seemingly overnight -- already after Day 3 of my first chemo treatment. There are also so-called "indolent" forms of non-Hodgkin's, and other cancers are typically slower-dividing as well, but luckily my cancer cells are workaholic.
2. The cancer was caught before I had any late-stage symptoms. I was able to schedule medical appointments quickly and the diagnosis was clear -- no ambiguous symptoms that would force me to spend months getting tests.
3. I have gotten so many great emails from friends and family around the world, offering their love and support. I'm so glad I told people about this, because I really feel that I've learned a lot about my friends, especially, in the process. I didn't know that some of my friends have cancer survivors in their families; my friend's mother was diagnosed last year and I had no idea (apparently, she was diagnosed in June and by February was already rollin' the dice in Vegas with her son).
4. My mother and brothers immediately made plans to visit. My mother has been here since April 8 and has been taking good care of me with lots of amazing healthy meals. If it weren't for her, I'm sure I would have lost more than just 2 kilos post-chemo. Not only have I been eating well, but I've also learned a lot about how to prepare meals so I can keep eating great even after my treatment is over. She’ll be here with me until April 22, when my brother Eric takes over. He’s staying until May 1. My other brother Ed is coming in mid-May. None of these family members had plans to visit this year otherwise.
5. My brother's an oncologist, so I’ve gotten a lot of reassurance and helpful advice from him.
6. My doctor here seems kind and competent and very experienced.
7. A good friend back from my days in public health happens to be a bonafide expert in cancer-related nutrition and has given me loads of information on what I can, should, or shouldn’t eat.
8. Amsterdam is a good place to become sick. Unlimited sick days, and no penalty for taking them. My coworkers and even upper management came by to tell me that I shouldn’t think like an American in this case – that I should make my health my number one priority and no one would question my commitment to work if I were to just take the entire 6 months off (I plan to do some work, actually, but on a limited basis). Besides that, I don’t have to get a prescription for marijuana to alleviate nausea here. I can just walk a few blocks to the neighborhood coffeeshop.
9. The weather here has turned beautiful and warm. It stays light until almost 8am and city has really come alive. This is the best time of year to be in Amsterdam, and it’s almost impossible to stay in a bad mood, let alone become depressed.
10. The timing of this thing was unbelievable. If I were to get it at any time in my life, this would be the perfect time. Young enough to recover quickly from the treatment, old enough to have coping skills and money. Long enough in Amsterdam to have developed a support network and understand some Dutch (useful for dealing with the medical system). Just after the end of snowboarding season and before I had scheduled any other trips that would have required cancellation of plane tickets. And just after finishing several major work projects with urgent deadlines. And during the spring, so that my 6 months of treatment fall right in the space between 2 snowboarding seasons and during the time when I don't mind so much being stuck in Amsterdam.
11. I have health insurance. So many people in the U.S. do not.
12. I won't be confined to bed for most of treatment. I can still enjoy life. I can still eat chocolate and ice cream! My mind still works just fine and all my limbs still work.
13. I get to catch up on books & DVDs.
14. I've learned a lot about nutrition that will help me even after the treatment is over.
15. I live walking distance from the supermarket, nightmarket, and a huge open-air market, as well as the chocolate/ice cream shop.
16. The view outside my window is lovely, of a city park and old Amsterdam houses and a little bit of the canal too. And when I open the floor-to-ceiling doors for fresh air, it's even nicer.
17. My apartment is also a nice place to spend the whole day, and I have a nice entertainment system (including Wii) for whiling away the hours.
18. It wouldn't hurt me to lose a few pounds anyway. :-)
19. The pain from the cancer is already nearly gone (no need for painkillers since Day 3 post chemo), and I can sleep through most of the night without any problems.
20. I still get to enjoy exploring new places, but just not so far away. The other day, I went to Amstelhaven and the Amstel Hotel for the first time.
21. Having cancer has made me more empathetic. I can finally really better understand what it means to have a serious illness and certain symptoms. For example, before I had no real grasp of what it is to have serious round-the-clock constipation or nausea. Now, even though I only experienced it for a short time, I realize how horrible it would be to suffer from it constantly, as some do.
22. No more writer's block. I was hardly ever motivated to post in my other blog: "A Snowboarder in Amsterdam", but now, I feel as though my thoughts are running in all-new directions, and I can only clear my brain by writing.
1. The cancer is treatable. The chemo works by attacking the fastest dividing cells in my body first (which is why people lose their hair). My cancer is especially treatable compared to other cancers because the tumor was growing so quickly. My brother told me, "the faster it grows, the faster it will shrink". And he was right. The lump had appeared seemingly overnight, and the lump had also disappeared seemingly overnight -- already after Day 3 of my first chemo treatment. There are also so-called "indolent" forms of non-Hodgkin's, and other cancers are typically slower-dividing as well, but luckily my cancer cells are workaholic.
2. The cancer was caught before I had any late-stage symptoms. I was able to schedule medical appointments quickly and the diagnosis was clear -- no ambiguous symptoms that would force me to spend months getting tests.
3. I have gotten so many great emails from friends and family around the world, offering their love and support. I'm so glad I told people about this, because I really feel that I've learned a lot about my friends, especially, in the process. I didn't know that some of my friends have cancer survivors in their families; my friend's mother was diagnosed last year and I had no idea (apparently, she was diagnosed in June and by February was already rollin' the dice in Vegas with her son).
4. My mother and brothers immediately made plans to visit. My mother has been here since April 8 and has been taking good care of me with lots of amazing healthy meals. If it weren't for her, I'm sure I would have lost more than just 2 kilos post-chemo. Not only have I been eating well, but I've also learned a lot about how to prepare meals so I can keep eating great even after my treatment is over. She’ll be here with me until April 22, when my brother Eric takes over. He’s staying until May 1. My other brother Ed is coming in mid-May. None of these family members had plans to visit this year otherwise.
5. My brother's an oncologist, so I’ve gotten a lot of reassurance and helpful advice from him.
6. My doctor here seems kind and competent and very experienced.
7. A good friend back from my days in public health happens to be a bonafide expert in cancer-related nutrition and has given me loads of information on what I can, should, or shouldn’t eat.
8. Amsterdam is a good place to become sick. Unlimited sick days, and no penalty for taking them. My coworkers and even upper management came by to tell me that I shouldn’t think like an American in this case – that I should make my health my number one priority and no one would question my commitment to work if I were to just take the entire 6 months off (I plan to do some work, actually, but on a limited basis). Besides that, I don’t have to get a prescription for marijuana to alleviate nausea here. I can just walk a few blocks to the neighborhood coffeeshop.
9. The weather here has turned beautiful and warm. It stays light until almost 8am and city has really come alive. This is the best time of year to be in Amsterdam, and it’s almost impossible to stay in a bad mood, let alone become depressed.
10. The timing of this thing was unbelievable. If I were to get it at any time in my life, this would be the perfect time. Young enough to recover quickly from the treatment, old enough to have coping skills and money. Long enough in Amsterdam to have developed a support network and understand some Dutch (useful for dealing with the medical system). Just after the end of snowboarding season and before I had scheduled any other trips that would have required cancellation of plane tickets. And just after finishing several major work projects with urgent deadlines. And during the spring, so that my 6 months of treatment fall right in the space between 2 snowboarding seasons and during the time when I don't mind so much being stuck in Amsterdam.
11. I have health insurance. So many people in the U.S. do not.
12. I won't be confined to bed for most of treatment. I can still enjoy life. I can still eat chocolate and ice cream! My mind still works just fine and all my limbs still work.
13. I get to catch up on books & DVDs.
14. I've learned a lot about nutrition that will help me even after the treatment is over.
15. I live walking distance from the supermarket, nightmarket, and a huge open-air market, as well as the chocolate/ice cream shop.
16. The view outside my window is lovely, of a city park and old Amsterdam houses and a little bit of the canal too. And when I open the floor-to-ceiling doors for fresh air, it's even nicer.
17. My apartment is also a nice place to spend the whole day, and I have a nice entertainment system (including Wii) for whiling away the hours.
18. It wouldn't hurt me to lose a few pounds anyway. :-)
19. The pain from the cancer is already nearly gone (no need for painkillers since Day 3 post chemo), and I can sleep through most of the night without any problems.
20. I still get to enjoy exploring new places, but just not so far away. The other day, I went to Amstelhaven and the Amstel Hotel for the first time.
21. Having cancer has made me more empathetic. I can finally really better understand what it means to have a serious illness and certain symptoms. For example, before I had no real grasp of what it is to have serious round-the-clock constipation or nausea. Now, even though I only experienced it for a short time, I realize how horrible it would be to suffer from it constantly, as some do.
22. No more writer's block. I was hardly ever motivated to post in my other blog: "A Snowboarder in Amsterdam", but now, I feel as though my thoughts are running in all-new directions, and I can only clear my brain by writing.
Tuesday, April 7, 2009
Fighting Nausea
I'm never hungry anymore, but I think about food all the time.
It's like I'm the worried parent and the sick kid at the same time. I know I have to keep my weight up, so I (the worried parent) plot what I'm going to make for myself (the sick kid) that won't trigger extreme nausea. Planning and preparing the food has become a necessary chore, like brushing my teeth. Usually, once I start eating, the food tastes good. Sometimes it stings a little; they warned me about mouth sores at the hospital. I still need to make an appointment with the cancer-specialized dental hygienist about that.
After a few vomiting episodes over the weekend, despite the strong anti-nausea medication I was taking, I wised up and searched the internet for articles on nausea. It turns out that it's better to eat smaller meals more frequently, eat slowly, not mix hot and cold foods, eat blander foods, and drink ice water. In general, cold food is better than hot. These tips helped a lot.
The nurse at the hospital had also emphasized that I had to be careful not to get trapped in the downward spiral of not eating because of nausea, as that just leads to more nausea, when the stomach continues to contract in expectation of food. She was right. A few times, when I was feeling most nauseous, I forced myself to eat just a small amount of food and felt instantly better.
My staple foods, for the moment, are blueberries and raspberries with muesli mix and soy milk in the morning. A mango later in the morning. Rice porridge with a few add-ins for flavor. I managed to work in some leftover Thai food, although it made me sick the other day, and it was all right. I do worry that, after 6 months of this, I'll never be able to enjoy a blueberry again. But I suppose that's a small price to pay for the honor of calling myself a cancer survivor.
It's like I'm the worried parent and the sick kid at the same time. I know I have to keep my weight up, so I (the worried parent) plot what I'm going to make for myself (the sick kid) that won't trigger extreme nausea. Planning and preparing the food has become a necessary chore, like brushing my teeth. Usually, once I start eating, the food tastes good. Sometimes it stings a little; they warned me about mouth sores at the hospital. I still need to make an appointment with the cancer-specialized dental hygienist about that.
After a few vomiting episodes over the weekend, despite the strong anti-nausea medication I was taking, I wised up and searched the internet for articles on nausea. It turns out that it's better to eat smaller meals more frequently, eat slowly, not mix hot and cold foods, eat blander foods, and drink ice water. In general, cold food is better than hot. These tips helped a lot.
The nurse at the hospital had also emphasized that I had to be careful not to get trapped in the downward spiral of not eating because of nausea, as that just leads to more nausea, when the stomach continues to contract in expectation of food. She was right. A few times, when I was feeling most nauseous, I forced myself to eat just a small amount of food and felt instantly better.
My staple foods, for the moment, are blueberries and raspberries with muesli mix and soy milk in the morning. A mango later in the morning. Rice porridge with a few add-ins for flavor. I managed to work in some leftover Thai food, although it made me sick the other day, and it was all right. I do worry that, after 6 months of this, I'll never be able to enjoy a blueberry again. But I suppose that's a small price to pay for the honor of calling myself a cancer survivor.
Day 5 of the First Chemo Cycle
The magic of Day 5. This afternoon I forced down my last pills of this cycle and told myself I was "a good girl" since no one else was around to witness the heroic act.
I still feel queasy and tired. I slept almost 12 hours last night. The weird taste in my mouth, like an extra thin layer of alien mucous coating my tongue and cheeks and teeth, is still there. I feel fragile, but that could be a result of staying in bed for almost 3 days and losing 2 kilos.
I had a not-so-ambitious list of things to do, and then proceeded to do even less than what was on the list. I managed to walk to the mail box to send my DVDs back to DVDPost (decided that I could and should watch the ending of Sweeney Todd after my 6 months of treatment are up). I also managed to walk a bit further to the pharmacist, to ask if they had gelcaps to hide the bitter flavor of prednisolone that I dreaded taking every day. The woman and the man behind the desk looked at each other and laughed. I somewhat expected the reaction, but it still hurt. I'll readily admit that the Dutch are tougher than we Americans. If I want easy-to-swallow, nice-tasting medicine, I always look for American brands. Still, I can't help feeling that the Dutch who take the attitude of 'grin and bear it' suffer unnecessarily more than they need to. The chemo treatment is bad enough; I'm going to do everything I can to make it more bearable.
On the way back from that unsuccessful mission, I passed a bakery which smelled delicious. But when I went inside, I found the sights and smells overwhelming and backed out again. Then I tried the chocolaterie. Thankfully, the strong chocolate smell still smelled good and didn't make me queasier. I was thinking that chocolate might be a way to fatten me up again. Ironic: I spent the whole past year trying in vain to lose a few pounds, but I found that the 'accomplishment' of this goal in just a few days time so alarming that I'm now set on trying to reverse the trend. Unfortunately, in my light-headed state, I had managed to leave the apartment without my wallet. So the chocolates are still in the store, but I'll go back shortly to pick them up.
Tonight I have a ticket to see Ojos de Brujos, a ticket that I bought months ago. I plan to go, although I'm not convinced it's a wise idea. I seem to be unusually sensitive to sights and sounds and smells. Usually I like to have background noise, such as iTunes or the television, as I clean up around the apartment or fix a meal. But in the last 2 days, I've preferred quiet indoors. It's nice to hear the birds outside and the shouts of the kids in the neighborhood playing in the park. I noticed on my walk today that some trees have sprouted green. Spring is really here at last.
I still feel queasy and tired. I slept almost 12 hours last night. The weird taste in my mouth, like an extra thin layer of alien mucous coating my tongue and cheeks and teeth, is still there. I feel fragile, but that could be a result of staying in bed for almost 3 days and losing 2 kilos.
I had a not-so-ambitious list of things to do, and then proceeded to do even less than what was on the list. I managed to walk to the mail box to send my DVDs back to DVDPost (decided that I could and should watch the ending of Sweeney Todd after my 6 months of treatment are up). I also managed to walk a bit further to the pharmacist, to ask if they had gelcaps to hide the bitter flavor of prednisolone that I dreaded taking every day. The woman and the man behind the desk looked at each other and laughed. I somewhat expected the reaction, but it still hurt. I'll readily admit that the Dutch are tougher than we Americans. If I want easy-to-swallow, nice-tasting medicine, I always look for American brands. Still, I can't help feeling that the Dutch who take the attitude of 'grin and bear it' suffer unnecessarily more than they need to. The chemo treatment is bad enough; I'm going to do everything I can to make it more bearable.
On the way back from that unsuccessful mission, I passed a bakery which smelled delicious. But when I went inside, I found the sights and smells overwhelming and backed out again. Then I tried the chocolaterie. Thankfully, the strong chocolate smell still smelled good and didn't make me queasier. I was thinking that chocolate might be a way to fatten me up again. Ironic: I spent the whole past year trying in vain to lose a few pounds, but I found that the 'accomplishment' of this goal in just a few days time so alarming that I'm now set on trying to reverse the trend. Unfortunately, in my light-headed state, I had managed to leave the apartment without my wallet. So the chocolates are still in the store, but I'll go back shortly to pick them up.
Tonight I have a ticket to see Ojos de Brujos, a ticket that I bought months ago. I plan to go, although I'm not convinced it's a wise idea. I seem to be unusually sensitive to sights and sounds and smells. Usually I like to have background noise, such as iTunes or the television, as I clean up around the apartment or fix a meal. But in the last 2 days, I've preferred quiet indoors. It's nice to hear the birds outside and the shouts of the kids in the neighborhood playing in the park. I noticed on my walk today that some trees have sprouted green. Spring is really here at last.
Monday, April 6, 2009
Constipation
I never realized how debilitating constipation could be.
I thought it was just a problem of not shitting for a few days.
What's far worse is when your body still, against your will, wants to expel its waste. But now it feels like the waste is a compact solid mass 5 times wider than the straw hole it's supposed to push through, and with little glass shards and pebbles buried within it. Is there anything less dignifying than squirming, shouting, crying on the toilet seat for two hours in the middle of the night in order to eject a little ball of shit the size of a mouse pellet?
I'm surprised the neighbors have not come by this morning to ask "what the @#$%?!"
There's a mad woman haunting their building.
I thought it was just a problem of not shitting for a few days.
What's far worse is when your body still, against your will, wants to expel its waste. But now it feels like the waste is a compact solid mass 5 times wider than the straw hole it's supposed to push through, and with little glass shards and pebbles buried within it. Is there anything less dignifying than squirming, shouting, crying on the toilet seat for two hours in the middle of the night in order to eject a little ball of shit the size of a mouse pellet?
I'm surprised the neighbors have not come by this morning to ask "what the @#$%?!"
There's a mad woman haunting their building.
What to Say to Someone Who Has Cancer
I never get tired of hearing: "I'm so sorry to hear that", "That sucks", and most of all "Let me know if there's anything I can do". I never get tired of hearing "I love you", "Don't hesitate to ask", "Call me any time", and "We're here for you" (or as my friend Clay said "we've got your back!"). I got a little teary when my company human resources person called to say that my health comes first and that work was a very distant second, followed by "Let me know if there's anything I can do."
Anger
Being a lifelong atheist, I'm not angry at God. I'm not angry at fate either. So many others have survived this disease and worse. The fates have been relatively kind to me, I think. I wasn't born a starving child with HIV in Africa, or with Down's Syndrome, or childhood leukemia. I wasn't locked in a cellar by my father and forced to bear his children for 25 years. There are far worse hells on earth.
I am angry at my tumor. It's like an alien creature curled up in my body. I want it OUT. I'm angry at it because I had to cancel my conference trip to Budapest, a snowboarding weekend in Les Arcs, and a sailing trip to Texel. I missed World Pillowfight Day and a Guitar Hero Party. I'm trapped here in Amsterdam for the next 6 months with nothing to look forward to than my next chemo treatment followed by 3 days of writhing and crying in the bathroom. I miss my hair already, even though it hasn't fallen out yet. And I'm angry that this cancer may have ruined thai food for me forever. I enjoyed it last night, but made the mistake of throwing it up in the bathroom sink instead of the toilet, so now the sink is clogged and I still haven't been able to get rid of the sour stench.
I am angry at my tumor. It's like an alien creature curled up in my body. I want it OUT. I'm angry at it because I had to cancel my conference trip to Budapest, a snowboarding weekend in Les Arcs, and a sailing trip to Texel. I missed World Pillowfight Day and a Guitar Hero Party. I'm trapped here in Amsterdam for the next 6 months with nothing to look forward to than my next chemo treatment followed by 3 days of writhing and crying in the bathroom. I miss my hair already, even though it hasn't fallen out yet. And I'm angry that this cancer may have ruined thai food for me forever. I enjoyed it last night, but made the mistake of throwing it up in the bathroom sink instead of the toilet, so now the sink is clogged and I still haven't been able to get rid of the sour stench.
Weight Loss
I weighed myself this morning and was shocked to find that I had lost 2 kilos seemingly overnight. For the past 3 weeks, my weight had been steady at 57 kilos. It's no wonder. I have to force myself to eat, and then I'm afraid to eat too much, because it's likely that I'll just throw it up. The pills and the water make me feel full; I have never drank so much water in my life. In the beginning, it tasted good, but now, even water has a strange and alien flavor. I really hope I get my taste buds back. I miss enjoying food.
Saturday, April 4, 2009
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