I can be a sarcastic person. I know some of you may scoff at that, as if 'tell us something we don't know.' And I'll start by saying I don't mean for this to sound cheesy, although I know how easily it can go there. Being raised Catholic, I've always been taught not to judge others, which, as we all know, is much easier said than done. When I was pregnant with twins, and hid it well under my heavy winter coat as long as I could, I often found myself wondering why people didn't automatically offer me a seat on the subway. Thinking, 'Doesn't that young man not realize how difficult it is to carry a baby in the belly, let alone two?'
I'm saying all of this because now with cancer, and almost at the end of my treatment, I REALLY look like cancer. The winter is warming, so I'm showing my bald head a bit more. Going into my last session, my eyebrows are nearly gone, and my eyelashes are holding on by a thread. I hid the cancer for as long as I could. Not on purpose by any means, but with a winter hat on and having more energy than not throughout treatment, I'm lucky that I'm able mostly to continue my normal routine. I know that this didn't happen to me because of something I did or didn't do. I know that this is just a part of life. But ever since I was told the news of 'there's something suspicious that we want to look at further,' before the biopsies, before I was told I actually had cancer, long before the double mastectomy and chemotherapy, I was aware. And when I walked around in public, got on the subway, went to the grocery store, life's chores that each and every one of us must accomplish just to get through the day - I became aware of, 'I have no idea what that person is going through.'
The stereotype of New Yorkers is rude. Even The Today Show's poll this past week, confirmed that America thinks New York is the rudest city in the country. I often joke and tell people, 'It's not New Yorkers that are rude, but the people who come here.' But in fact, I can see how this myth can be seen as true. With so many people in this city, from so many walks of life, performing such a variety of jobs, and then possibly going through a myriad of mental and physical troubles, how could one NOT hold a grudge? And when you hold a grudge, no matter what it may be and you're around others, it can be conveyed as rude.
So when I sat next to an African American man this morning on the subway, who refused to close his legs in order to make room for me to rest myself, I had to hold back my tongue. I had to remind myself, 'I've no idea what he's going through right now.' When I walk past a homeless person with the twins, I must always say, 'We don't know what happened to that person that made him get to this point in his life.' When someone pushes past me on the sidewalk, I don't know if they're rushing off to make an appointment at the hospital. Or when someone is in a daze and in my way, I don't know if they're thinking about the news they just received that will change their life forever.
With that, I leave you with the reminder that we simply don't know what's going on in a stranger's life. And that as we all continue on this road with one another, we're all in it together. As for that man on the subway, I forged my ass in. He huffed and puffed a bit, because I didn't 'look' like I needed a seat. But three stops later when an obviously pregnant woman got on the train, he offered his seat without hesitation and said to the woman, 'My wife is pregnant with twins, I understand.' And now, so do I.
Thursday, February 2, 2012
Sunday, January 29, 2012
About RADIATION...
Graham described it best afterwards, "They're probably so used to seeing people beaten down by time they see them that it was most likely refreshing for them to meet with us." Needless to say, we had a good time. I know, a bit bizarre, right? But at this point, with only one chemo treatment remaining, I'm like a kid anxious for Christmas. I'm just giddy as can be, wanting more than anything for all of this to be over with.
Questions that we wanted to know from my newest specialist, Dr. Evans, Radiation Oncologist: was his preference to have my implant exchange before or after radiation treatment; how long would I undergo radiation; how many days a week; how would I feel; any other side effects; any long term side effects; how would I know that it all worked; and most importantly, can I drink some alcohol?
After I gave the Nurse Practicioner, Larry, a former flight attendant, all of my history, I dressed into a gown and waited for Dr. Evans. The South African doc was a fresh dose of realism. While he examined me, he commented on what great work my previous surgeons had done. He commended me on the full movement of my right arm, where I had 24 lymph nodes removed. I dressed and he came back in to share what he knew.
The first thing he said was that I am doing everything perfectly, but that doing chemotherapy and radiation is just an insurance policy against removing and getting rid of any cancer that is possibly still present. Doing radiation increases my chance of survival by another 15%. I knew the reason for doing chemotheraphy was because of the cancer found in my lymph nodes near my breast. Since they're a part of the lymphatic system that travels through the entire body, the cytotoxins of chemo treatment would kill those little microscopic cancer cells that may have started growing elsewhere that we don't yet know about. Radiation treatment, because on the direct spot, will kill any other cancer that is directly in lymph node area that we already know about.
There are three reasons why to get radiation. The first is if there is a tumor larger than 5cm. My largest was 2.5cm, although I'm sure all 15 combined would be more than 5cm, that doesn't quite count. The second is if there are at least 4 cancerous lymph nodes found. I had 8. And third is if the margin is less than 2.5cm. (The margin is the distance between the tumor and the cut of the surgeon.) Mine was 1.4cm. So with 2 out of 3, I get radiation.
I'll receive radiation in 3 locations: the actual area where the cancerous lymph nodes were found and the areas on either side, below along my right side, and above, above my right breast below my clavicle. If I were having radiation directly on any organ, I would have worse side effects (i.e. I'd have stomach pains and digestive problems for radiation on my abdomen for ovarian cancer, or migraines for radiation for brain cancer). But because I'm not receiving it directly on an organ, my side effects will be as minimal as they could be for radiation. The worst that can happen is that due to the radiation on the lymph nodes at the top of my chest, there might be permanent scarring at the top of my right lung. So we'll have to keep an eye on it. But luckily since it's on my right side, it won't affect my heart at all and they'll actually shield and isolate that part of my chest. The most common side effect of radiation is fatigue, and is mostly due to the anxiety, depression or lack of activity. He said my fatigue level will be similar to my level after my nadir time (the halfway point between chemo treatments). So, I anticipate no fatigue at all.
The exterior side effect will be the effects of the skin itself. Because radiation is directly applied to the skin, there will be skin and tissue damage. I can't use any fragrant lotions, body washes, bath solutions or even deoderant. I can't take any hot baths or showers, only mildly lukewarm. However, I'll have to apply the suggested lotions (the nurses will give me all the details on my next visit) two to three times a day to prevent any redness and possibly blistering. The skin could change a darker color around where the radiation occurs, but will go away within the year. Note, how my skin changes with a sun tan makes no difference as to what will happen due to radiation. The area could also have some swelling and iritation so the more that I do preventative care, the better. I'll have to keep track of lymphodema, the swelling of my arm and hand because of the removed lymph nodes. And the hair loss only occurs on the area radiated, which means we'll see the hair come back under my left pit before my right. That'll be fun!
Dr. Evans' preference is to have radiation before the implant exchange surgery. Most women want to do the exchange surgery as soon as possible, simply because it's a bit uncomfortable having the tissue extenders in. I concur that they do feel somewhat disconnected from my body, hardened, and tender at times. But if I take the time out to do the chemo, then having the radiation soon afterwards, helps my insurance policy that much more. Also, radiation do sometimes shift or alter the implant, and do tissue damage under the skin. Some women would then have to go in and have a third surgery. But doing the implant exchange surgery after radiation, the plast surgeon could correct any tissue damage at that time. So even though I'll have to wait 3 months, the answer is, let's wait and take care of the cancer now.
The suggested days of radiation are 28, so we're rounding to an even 30. I'll go in for a scan on 2/15, the week after my last chemo treatment, to get everything checked out and to get my temporary tattoos put on. These are markers that they place in order to ensure that each radiation treatment is on the exact spot each time. Then we'll start a couple of weeks afterwards. I'll go Monday through Friday, 5 days a week, for 6 weeks. The actual time of radiation is only 1-5 minutes, but the time to check in and get situated will be 30 minutes to an hour. Since the hospital is about a 30 minute walk from my office, I'm planning on biking to and from in order to eliminate the time taken out of my day.
So now, I see the light. By the end of April, I will have completed all my treatment. I can't tell you how happy this makes me. Graham and I left that office completely ecstatic. One more chemo, 30 days of radiation, and then life back to normal. It'll take about 3 months for all my hair to grow back (my eyebrows are finally disappearing, eyelashes are hanging on). And then a scan months afterwards to ensure that the cancer is all gone. The exchange surgery will be around August, one year after it all started.
But the blogging won't end there... I've still got to talk about:
The financial impact of cancer, even with insurance.
The food during chemotherapy.
The kindness of family and friends.
What cancer and chemo means to toddlers.
and much more.
Love you all.
Laurie
PS - I can drink, but in moderation. So I'm also counting down the days to have that glass of wine, sangria and mojito, but not all at the same time!
Questions that we wanted to know from my newest specialist, Dr. Evans, Radiation Oncologist: was his preference to have my implant exchange before or after radiation treatment; how long would I undergo radiation; how many days a week; how would I feel; any other side effects; any long term side effects; how would I know that it all worked; and most importantly, can I drink some alcohol?
After I gave the Nurse Practicioner, Larry, a former flight attendant, all of my history, I dressed into a gown and waited for Dr. Evans. The South African doc was a fresh dose of realism. While he examined me, he commented on what great work my previous surgeons had done. He commended me on the full movement of my right arm, where I had 24 lymph nodes removed. I dressed and he came back in to share what he knew.
The first thing he said was that I am doing everything perfectly, but that doing chemotherapy and radiation is just an insurance policy against removing and getting rid of any cancer that is possibly still present. Doing radiation increases my chance of survival by another 15%. I knew the reason for doing chemotheraphy was because of the cancer found in my lymph nodes near my breast. Since they're a part of the lymphatic system that travels through the entire body, the cytotoxins of chemo treatment would kill those little microscopic cancer cells that may have started growing elsewhere that we don't yet know about. Radiation treatment, because on the direct spot, will kill any other cancer that is directly in lymph node area that we already know about.
There are three reasons why to get radiation. The first is if there is a tumor larger than 5cm. My largest was 2.5cm, although I'm sure all 15 combined would be more than 5cm, that doesn't quite count. The second is if there are at least 4 cancerous lymph nodes found. I had 8. And third is if the margin is less than 2.5cm. (The margin is the distance between the tumor and the cut of the surgeon.) Mine was 1.4cm. So with 2 out of 3, I get radiation.
I'll receive radiation in 3 locations: the actual area where the cancerous lymph nodes were found and the areas on either side, below along my right side, and above, above my right breast below my clavicle. If I were having radiation directly on any organ, I would have worse side effects (i.e. I'd have stomach pains and digestive problems for radiation on my abdomen for ovarian cancer, or migraines for radiation for brain cancer). But because I'm not receiving it directly on an organ, my side effects will be as minimal as they could be for radiation. The worst that can happen is that due to the radiation on the lymph nodes at the top of my chest, there might be permanent scarring at the top of my right lung. So we'll have to keep an eye on it. But luckily since it's on my right side, it won't affect my heart at all and they'll actually shield and isolate that part of my chest. The most common side effect of radiation is fatigue, and is mostly due to the anxiety, depression or lack of activity. He said my fatigue level will be similar to my level after my nadir time (the halfway point between chemo treatments). So, I anticipate no fatigue at all.
The exterior side effect will be the effects of the skin itself. Because radiation is directly applied to the skin, there will be skin and tissue damage. I can't use any fragrant lotions, body washes, bath solutions or even deoderant. I can't take any hot baths or showers, only mildly lukewarm. However, I'll have to apply the suggested lotions (the nurses will give me all the details on my next visit) two to three times a day to prevent any redness and possibly blistering. The skin could change a darker color around where the radiation occurs, but will go away within the year. Note, how my skin changes with a sun tan makes no difference as to what will happen due to radiation. The area could also have some swelling and iritation so the more that I do preventative care, the better. I'll have to keep track of lymphodema, the swelling of my arm and hand because of the removed lymph nodes. And the hair loss only occurs on the area radiated, which means we'll see the hair come back under my left pit before my right. That'll be fun!
Dr. Evans' preference is to have radiation before the implant exchange surgery. Most women want to do the exchange surgery as soon as possible, simply because it's a bit uncomfortable having the tissue extenders in. I concur that they do feel somewhat disconnected from my body, hardened, and tender at times. But if I take the time out to do the chemo, then having the radiation soon afterwards, helps my insurance policy that much more. Also, radiation do sometimes shift or alter the implant, and do tissue damage under the skin. Some women would then have to go in and have a third surgery. But doing the implant exchange surgery after radiation, the plast surgeon could correct any tissue damage at that time. So even though I'll have to wait 3 months, the answer is, let's wait and take care of the cancer now.
The suggested days of radiation are 28, so we're rounding to an even 30. I'll go in for a scan on 2/15, the week after my last chemo treatment, to get everything checked out and to get my temporary tattoos put on. These are markers that they place in order to ensure that each radiation treatment is on the exact spot each time. Then we'll start a couple of weeks afterwards. I'll go Monday through Friday, 5 days a week, for 6 weeks. The actual time of radiation is only 1-5 minutes, but the time to check in and get situated will be 30 minutes to an hour. Since the hospital is about a 30 minute walk from my office, I'm planning on biking to and from in order to eliminate the time taken out of my day.
So now, I see the light. By the end of April, I will have completed all my treatment. I can't tell you how happy this makes me. Graham and I left that office completely ecstatic. One more chemo, 30 days of radiation, and then life back to normal. It'll take about 3 months for all my hair to grow back (my eyebrows are finally disappearing, eyelashes are hanging on). And then a scan months afterwards to ensure that the cancer is all gone. The exchange surgery will be around August, one year after it all started.
But the blogging won't end there... I've still got to talk about:
The financial impact of cancer, even with insurance.
The food during chemotherapy.
The kindness of family and friends.
What cancer and chemo means to toddlers.
and much more.
Love you all.
Laurie
PS - I can drink, but in moderation. So I'm also counting down the days to have that glass of wine, sangria and mojito, but not all at the same time!
Tuesday, January 17, 2012
Before Chemo #5
I hope this finds each and everyone of you back comfortably in your own realities after the holidays. As I prepare for Chemo#5 tomorrow, consume all of my meds (steroids, zantac, and cinnamin chai tea, thanks to Heather Foley), get as many chores and tasks done before I'm knocked on my ass yet again - there were others that lived horrible realities through the holidays that I'd like to take a moment to pay their respects. The holidays are the worst time for tragedies to happen. Maybe because it's supposed to be such a happy time, one of joy, and giving. We all heard of the house fire in CT or the family shooting in TX. There were people who passed away over the holidays. I lost a woman I called a dear friend, to cancer. She fought it for many years, lived with it, saw it come and go. But you would have never known it by looking at her, however I'm sure the ones closest to her experienced every minute of it. And that's not an easy battle to fight either. Another friend by association, found out she's terminal. And I have a work associate terminal with another. I say these things not to make you feel guilty for having a good time through the holidays. Hell, I did. We all deserve it. I say it mostly because it's things like this - tragedy, death, cancer - that make as look at our own lives, remind ourselves what's most important to us.
I couldn't go through any of this without all of the love and support. I don't say this to expect more (although I'm not one to deny anyone giving me a lil' love=). Cancer comes in all forms, and it effects people in a number of different ways. Besides me, I'm sure you know a number of people that have fought it, are fighting, survived, died, or has had to care for a loved one going through it. So when I hear folks say that I look great (which thanks by the way) or amazed that I ride my bike (which I've only done twice throughout all of this), what you're not seeing are the days when I'm laid up in bed, having chestpains, moving so slow I feel what it'll be like to be elderly, so tired that I can't even lift my head, and feeling aches throughout my whole body I've never felt my entire life.
With that, I hope to truly document, with words and photos, what it's like, for me that is. I'll go out an about each day. I have to. Physically because my body needs the fresh air and the movement. Mentally because my brain needs something more than TV and electronics. So I'll do it early in the day while I have the energy. I'll try to nap, but it just doesn't work and somehow I feel worse afterwards. I'll go to sleep around 9pm, wake up around 6am. Will either read or check emails or play games, waiting for my eyelids to get heavy once again. And then sleep until about 8 or 9am. So it'll be the time at home that I'll focus on.
I have appointments early on Thursday and Friday. On Thursday, I have my first pelvic exam with my GYN since all of this began. It's something I'll talk about once I actually what know is going on with my reproductive organs. One, I need to deal with the outcome first. Two, I thought it best to have has few emails as I can openly mention menstrual cycles, periods, discharge - oops, guess this one is one of the few. Then I'll go to work for a bit before I return to the hospital to receive my Neulasta Immunity Booster shot, which ironically may be the cause of the extreme soreness in my neck and shoulders for the several days afterwards. I've found it odd the last two times that the nurse was surprised when I said that I'll take it in my arm. Does one have something to do with the other? What if I take it in my ass? Will my hips, thighs and ass hurt? Which one will be better? May ask you heads or tails the day of, so stay tuned.
On Friday, I have a site visit to review the location for Japan Day @ Central Park (yes, it's here already, and will actually be on Mother's Day - stay tuned)! So after we're done, I may just spend the rest of the morning while I have the energy roaming through the Park. Again, great to live in New York.
Off to take my steriod pills, zantac, and colace. Then get some shut eye before I prepare to conquer the Red Devil.
Love you all.
Laurie
I couldn't go through any of this without all of the love and support. I don't say this to expect more (although I'm not one to deny anyone giving me a lil' love=). Cancer comes in all forms, and it effects people in a number of different ways. Besides me, I'm sure you know a number of people that have fought it, are fighting, survived, died, or has had to care for a loved one going through it. So when I hear folks say that I look great (which thanks by the way) or amazed that I ride my bike (which I've only done twice throughout all of this), what you're not seeing are the days when I'm laid up in bed, having chestpains, moving so slow I feel what it'll be like to be elderly, so tired that I can't even lift my head, and feeling aches throughout my whole body I've never felt my entire life.
With that, I hope to truly document, with words and photos, what it's like, for me that is. I'll go out an about each day. I have to. Physically because my body needs the fresh air and the movement. Mentally because my brain needs something more than TV and electronics. So I'll do it early in the day while I have the energy. I'll try to nap, but it just doesn't work and somehow I feel worse afterwards. I'll go to sleep around 9pm, wake up around 6am. Will either read or check emails or play games, waiting for my eyelids to get heavy once again. And then sleep until about 8 or 9am. So it'll be the time at home that I'll focus on.
I have appointments early on Thursday and Friday. On Thursday, I have my first pelvic exam with my GYN since all of this began. It's something I'll talk about once I actually what know is going on with my reproductive organs. One, I need to deal with the outcome first. Two, I thought it best to have has few emails as I can openly mention menstrual cycles, periods, discharge - oops, guess this one is one of the few. Then I'll go to work for a bit before I return to the hospital to receive my Neulasta Immunity Booster shot, which ironically may be the cause of the extreme soreness in my neck and shoulders for the several days afterwards. I've found it odd the last two times that the nurse was surprised when I said that I'll take it in my arm. Does one have something to do with the other? What if I take it in my ass? Will my hips, thighs and ass hurt? Which one will be better? May ask you heads or tails the day of, so stay tuned.
On Friday, I have a site visit to review the location for Japan Day @ Central Park (yes, it's here already, and will actually be on Mother's Day - stay tuned)! So after we're done, I may just spend the rest of the morning while I have the energy roaming through the Park. Again, great to live in New York.
Off to take my steriod pills, zantac, and colace. Then get some shut eye before I prepare to conquer the Red Devil.
Love you all.
Laurie
Thursday, December 29, 2011
Treatment after Christmas Vacation
Yesterday, was chemo#4, the day after we returned from holiday in Louisiana. So if you're asking yourself if I actually scheduled my chemo treatment around our christmas vacation, the answer is yes. Haven't we met?
I didn't blog because I finally uploaded pictures since September to Facebook, and worked on my 100+ work emails collected while away. And we didn't do a meal list because of the hectic holidays & the fact we're mostly covered by visiting with friends & family.
As for chemo#4, I'm being extremely diligent about medication & nutrition. Medication - eating Tums every 3-4 hours to prevent the massive heartburn, taking an anti-nausea pill at the slightest queasy stomach, etc. Nutrition - small portions (i.e. listening to Graham when he says that I've had enough), no tomatoes or peppers for the first five days (to aid in anti-heartburn), high proteins (to aid in healthy cell regrowth), high ruffage & fat-free (to aid in digestion). And as always, hydrate, hydrate, hydrate - to force flushing of the system, so to speak.
I hope everyone's holidays went and are still going along smoothly. Here's to going into 2012 with a more educated mind, a warm heart and a healthier body. May all of your wishes during this time be fulfilled, and may you all find the enlightenment you're needing & searching for.
All my love,
Laurie
I didn't blog because I finally uploaded pictures since September to Facebook, and worked on my 100+ work emails collected while away. And we didn't do a meal list because of the hectic holidays & the fact we're mostly covered by visiting with friends & family.
As for chemo#4, I'm being extremely diligent about medication & nutrition. Medication - eating Tums every 3-4 hours to prevent the massive heartburn, taking an anti-nausea pill at the slightest queasy stomach, etc. Nutrition - small portions (i.e. listening to Graham when he says that I've had enough), no tomatoes or peppers for the first five days (to aid in anti-heartburn), high proteins (to aid in healthy cell regrowth), high ruffage & fat-free (to aid in digestion). And as always, hydrate, hydrate, hydrate - to force flushing of the system, so to speak.
I hope everyone's holidays went and are still going along smoothly. Here's to going into 2012 with a more educated mind, a warm heart and a healthier body. May all of your wishes during this time be fulfilled, and may you all find the enlightenment you're needing & searching for.
All my love,
Laurie
Tuesday, December 27, 2011
Chemo Treatment 3 of 6
day 1, wed - finished in 1/2 the time since I haven't had any side effects during infusion. went to the office for a little bit then to home to start resting up!
day 2, thurs - 1/2 day at the office while I have energy, but I feel the exhaustion setting in at 11am, but I have to wait to get to the hospital for my immunity boost injection. I go home right afterwards at 2pm to sleep. Starting to feel the achiness, and nausea sets in. Thank goodness for medication. A dear friend delivers dinner.
day3, fri - morning meeting at the office, leave by 11am. At home, I can't move. I start to feel abdominal pains, and exhaustion. I take the codine and regelin to ease, but simply need to wait it out. Another dear friend delivers dinner.
day 4, sat - exhaustion, achiness, exhaustion, soreness, exhaustion, achiness. Feel good in the morning, so make the family blueberry pancakes which are actually great for me to eat. But I must get out. Twins have a playmate's birthday party and it's good to get out and sit amongst friends. We go home, and I a little chinese food (which, no matter how much soy sauce, still can't taste) and then try to get through the night of constipation (due to chemo and codine), achiness and stomach pains.
day 5, sun - feel good in the morning. I go grocery shopping in the morning, but have it all delivered. It feels good to walk and stretch my body. I go home and crash. Another birthday party in the evening, which we all enjoy. But once we're home and I get the girls settled for the night, the achiness and pain sets in. It's a tough night, but I get through.
day 6, mon - Still feeling abdominal pain, plus one of the girls have a fever. I stay home with her and we both sleep it out. But by the time the night comes, my head is pounding with congestion, and I have to do everything I can not to get a fever. Another dear friend delivers dinner. Once the girls are asleep, I nasal wash, take a hot eucalyptus, rub myself with mentholatum, put hydrogen poroxide drops into my ears, and snuggle into bed. Once the hubby gets home, he rubs my head with Tiger Balm, and puts mentholatum on my feet. I sleep all night long.
day 7, tues - I wake still feeling the sinus headache, but check my temperature (every four hours) and ensure that it doesn't go above 100 degrees (in which I'd have to get to the hospital ASAP). I nasal wash in the morning, and feel better. I get a decongestant (not Advil, no blood thinners), and go to work. My head still aches, and whenever I bend down or put my head lower than my heart my head fills like it'll explode! I leave work early, and take it easy at home. A dear friend from afar ordered dinner for us. Hubby gets home and takes care of the girls. I do my nightly detox - eucalyptus bath, nasal wash, drops in ears, mentholatum rub and snuggle in.
day 8, wed - I wake feeling much, much better!!!!! Fighting chemo and a cold! Now, that's exhausting! Off to work!
day 9, thu - feel well enough to attend the festival holiday party!
day 10, fri - feel completely normal. We take the girls to see Cathy Rigby in PETER PAN at Madison Square Garden, and it's completely amazing!!!!
day 11, sat through day 15, wed - all is well, and if you couldn't see my bald head you'd think I was completely healthy!
day 16, thur - travel day to New Orleans. I wrap my right arm, the one with the 24 removed lymph nodes, with an ace bandage during the flight in order to prevent swelling. However, the 3.5 hour flight still causes swelling, and towards the end I'm the crazy lady holding her arm in the air & massaging it madly. It's sore for several hours after we land and returns to normal soon after. The plane ride was fine, and couldn't expect any more germs on an airplane than exists on the New York subway. However the second twin gets the first twins' fever and we work over the next 3 days on fighting the virus. it works!
day 17, fri - we go for a boat ride on the bayou!
day 18, sat - Christmas Eve, and see old friends at mass. I wear my wig for the first time, so as to not draw anymore attention than need be. I realize that it actually helps mask me like I never thought! No one is looking, and that's strange for south Louisiana! It itches a bit, but other than that, completely works.
day 19, sun - Christmas Day, couldn't have asked for more.
day 20, mon - Large family get together in Baton Rouge, and it's great to see the extended family.
day 21, tues - travel day back to NYC. Since the flight is an hour shorter due to tailwind, there is no swelling in the arm, just a little soreness. We get home, unpack and I prepare for treatment #4!
day 2, thurs - 1/2 day at the office while I have energy, but I feel the exhaustion setting in at 11am, but I have to wait to get to the hospital for my immunity boost injection. I go home right afterwards at 2pm to sleep. Starting to feel the achiness, and nausea sets in. Thank goodness for medication. A dear friend delivers dinner.
day3, fri - morning meeting at the office, leave by 11am. At home, I can't move. I start to feel abdominal pains, and exhaustion. I take the codine and regelin to ease, but simply need to wait it out. Another dear friend delivers dinner.
day 4, sat - exhaustion, achiness, exhaustion, soreness, exhaustion, achiness. Feel good in the morning, so make the family blueberry pancakes which are actually great for me to eat. But I must get out. Twins have a playmate's birthday party and it's good to get out and sit amongst friends. We go home, and I a little chinese food (which, no matter how much soy sauce, still can't taste) and then try to get through the night of constipation (due to chemo and codine), achiness and stomach pains.
day 5, sun - feel good in the morning. I go grocery shopping in the morning, but have it all delivered. It feels good to walk and stretch my body. I go home and crash. Another birthday party in the evening, which we all enjoy. But once we're home and I get the girls settled for the night, the achiness and pain sets in. It's a tough night, but I get through.
day 6, mon - Still feeling abdominal pain, plus one of the girls have a fever. I stay home with her and we both sleep it out. But by the time the night comes, my head is pounding with congestion, and I have to do everything I can not to get a fever. Another dear friend delivers dinner. Once the girls are asleep, I nasal wash, take a hot eucalyptus, rub myself with mentholatum, put hydrogen poroxide drops into my ears, and snuggle into bed. Once the hubby gets home, he rubs my head with Tiger Balm, and puts mentholatum on my feet. I sleep all night long.
day 7, tues - I wake still feeling the sinus headache, but check my temperature (every four hours) and ensure that it doesn't go above 100 degrees (in which I'd have to get to the hospital ASAP). I nasal wash in the morning, and feel better. I get a decongestant (not Advil, no blood thinners), and go to work. My head still aches, and whenever I bend down or put my head lower than my heart my head fills like it'll explode! I leave work early, and take it easy at home. A dear friend from afar ordered dinner for us. Hubby gets home and takes care of the girls. I do my nightly detox - eucalyptus bath, nasal wash, drops in ears, mentholatum rub and snuggle in.
day 8, wed - I wake feeling much, much better!!!!! Fighting chemo and a cold! Now, that's exhausting! Off to work!
day 9, thu - feel well enough to attend the festival holiday party!
day 10, fri - feel completely normal. We take the girls to see Cathy Rigby in PETER PAN at Madison Square Garden, and it's completely amazing!!!!
day 11, sat through day 15, wed - all is well, and if you couldn't see my bald head you'd think I was completely healthy!
day 16, thur - travel day to New Orleans. I wrap my right arm, the one with the 24 removed lymph nodes, with an ace bandage during the flight in order to prevent swelling. However, the 3.5 hour flight still causes swelling, and towards the end I'm the crazy lady holding her arm in the air & massaging it madly. It's sore for several hours after we land and returns to normal soon after. The plane ride was fine, and couldn't expect any more germs on an airplane than exists on the New York subway. However the second twin gets the first twins' fever and we work over the next 3 days on fighting the virus. it works!
day 17, fri - we go for a boat ride on the bayou!
day 18, sat - Christmas Eve, and see old friends at mass. I wear my wig for the first time, so as to not draw anymore attention than need be. I realize that it actually helps mask me like I never thought! No one is looking, and that's strange for south Louisiana! It itches a bit, but other than that, completely works.
day 19, sun - Christmas Day, couldn't have asked for more.
day 20, mon - Large family get together in Baton Rouge, and it's great to see the extended family.
day 21, tues - travel day back to NYC. Since the flight is an hour shorter due to tailwind, there is no swelling in the arm, just a little soreness. We get home, unpack and I prepare for treatment #4!
Monday, December 12, 2011
LIFE WITH CHEMO ....
... can sometimes seem like normal. For just a second, then something like the sores on my tongue, a peek at my reflection in a passing store window, the deep sighs that help me catch my breath - they all remind me. There are times I use my cancer card, in fact as often as I can. To grab a seat on the subway, to get out of helping with thanksgiving dinner, to get out of doing dishes. But for the most part, I try to do everything I can, as if life were normal. But there are times I can't. I can't make it to the Beijing Dance Co's performance at Lincoln Center because I wore myself out on Thanksgiving. I can't go to the closing night of the solo festival I labored on all year long, because it's the weekend after a treatment & I'm knocked on my ass. I can't go to a late night avant garde show with my best friends because anything after 9pm is considered bedtime.
When I cook I have to be careful during each step. I idioitically put my hand in the skillet to adjust the bacon, just like I normallly would. Sounds stupid I know but it never hurt me before. But now, I can feel the heat before my finger touches down and I wake up, as if in a daze, and remind myself I'm on chemo.
Then there's the actual care of one's self. Imagine the concept? See, while on chemo it's hard for your body to heal. In any possible way, it's hard to heal. A paper cut here, a bite of the tongue there. It all adds up. I think of people whose lives are changed by a diagnosis in which they must make a drastic change to their lifestyle, overnight and for the rest of their lives. Like the bubble boy, allergic to everything. Or those with severe asthma that must keep everthing pristine. I imagine it, and, as silly as it sounds, am thankful that I just have cancer. That this is only temporary and I hold onto that.
When I eat, I need to ensure that the food isn't too hot. I already burnt my tongue on the first day of chemo by the first sip of hot soup. That was 6 weeks ago & it just now feels like it's on the verge of healing. There have been other, shall we say, mouth incidents. A few ulcers, or whatever they are inside your mouth, have popped up. You know, those little sores that randomly appear, bother the hell out of you when they're there, and then majically disappear. Well, imagine that they don't. So instead of becoming obsessed with them, which is easy to do, I do anything to find a little relief, and sometimes if I'm lucky, a little remedy. I chew on gum or suck on a throat lozenge whenever possible. It helps to keep the mouth & throat well lubricated. When I brush my teeth I have to be extra careful not to brush my gums too hard. When I floss I have to make sure I don't break any skin. Then rinsing with mouthwash is extremely painful, especially on my raw tongue but I know it's doing its job of disenfecting. And in the worse case scenario, I rinse with baking soda, salt & lukewarm water, which is about as nasty as it can get.
When my husband and twins come down with colds, I become obsessed with hand washing, whenever I touch anything, use the bathroom, touch a door handle. Hand sanitizer becomes my friend. I start to feel like an OCD person who's fearful of germs & can't imagine the life. It's tiring. See the slightest illness or fever can send me to the hospital for days, and on the verge of pheumonia. So I nasal wash the girls at night in the tub, and do it to myself, but not too hard. I can't pop a vessel. When I blow my nose, I have to do it gently.
And now that I'm washing and cleaning my hands every 10 minutes throughout the day, they are extremely dry. So after each cleansing, I must moisterize. If not, I'll get a small cut here and there, never knowing where exactly it came from. And when I find it, I have to watch over it carefully until it's fully healed, ensuring that it doesn't become infected.
When I cook I have to be careful during each step. I idioitically put my hand in the skillet to adjust the bacon, just like I normallly would. Sounds stupid I know but it never hurt me before. But now, I can feel the heat before my finger touches down and I wake up, as if in a daze, and remind myself I'm on chemo.
But there are times when I feel daring, as if i say, I've got cancer, how much worse can it get? Being a New Yorker, one always tempts fate, but when I'm on my uphill, I'm Evil Kinevil. I race for the subway door and stick my foot in as I stare down the conductor letting her know that I'm only going in one direction. Or crossing the street, jaywalking really and doing it in front of a cop car. C'mon, arrest me. Or especially when I bike, weaving in and out of cars as I make my way crosstown. I know it's wrong, and even stupid. I know that I must be even more careful now then ever before. But it's at these times that, just for a moment, I feel like I'm my old self. Before cancer. Before a label that will forever put me into a category and group that no one could ever possibly wish for.
So as I go through chemo, I strive to keep life as normal as possible. If not for me, then for Graham and the girls. The girls do ask if someone is bringing us dinner on certain nights, and they've learned that it's when mommy has had chemo. Sophie is asking for me to tell her the story about my boobs less and less. They don't even think twice about my bald head. But they know they can't kiss me on the lips anymore, so I'm finding them more and more wanting to kiss my cheeks or even my head. They've mastered covering themselves when they cough, but still want to jump on mommy at the most inconvenient moments. How do you say no to a 3 year old's love? You can't. And when they're sick, you can't turn your back. Even if it means you could wind up in the ER. So I also become obsessed with checking my temperature every 4 hours when the girls are sick, to ensure it doesn't go above 99 degrees. The docters cringe when I tell them that the girls have been sick, but what do you do? Not care for your kid? Not hold her when all she needs is mommy's comfort? Tell me one mother who wouldn't.
So the answer is that life on chemo sucks. You feel achy, exhausted, and sometimes painful. Nutrition is the key. Eating the right things - before, during and after chemo. What's even more ridiculous is by the time I master it, I'll be done, and crossing all fingers, hopefully for good.
Tuesday, December 6, 2011
CHEMO TREATMENT 2 OF 6
day1, wed - a bit tired after treatment but I stop by the office anyways for a couple of hours.
day2, thur - I have tons of work to do so I push through & work a full day, at night I'm worn out and am thankful for the dinner brought over by a friend.
day3, fri - still tired, but in order to not fall behind at work I push through one last time. I feel the exhaustion take over & when I get home, I completely pass out.
day4, sat - I can barely move. I bring the girls to a playdate, thankful for friends who will watch over them for 8 hours. I rest & feel better. My eyes are bigger than my stomach and I eat what I want. Not a good idea. That night I puke. I realize I didn't heed any of my nutrition advice that I did the first time around and am now paying the price. At least I now know what I shouldn't do.
day5, sun - I take it easy, on both my body & mind.
Day 6, mon - I feel better & pace myself. Full work day & go straight home.
Day 7, tues - good day, work, visit with best friends & home. Rest as much as possible
Day 8, wed - slow work day, bring the girls to the rehearsal of the Camp Broadway kids for Macys, dinner then trip to Macys to write their letters to Santa.
Day 9, Thanksgiving - good day, but sad that I'm missing out on drinking. I never realized how much I enjoyed drinking on turkey day until I couldn't. I throw the football around & feel good.
Day 10, fri - start holiday decorating, visit with best friends - LSU FOOTBALL!
Day 11, sat - grocery shopping, playground with the girls, and visit with best friends.
Day 12, sun - relax and clean the house, dinner out with the girls (friends not twins)
Day 13, mon through Day 17, fri - All is as well as can be. Energy good. Appetite good. Work full days, but still pace myself & am able to keep up with the family at night. I bike to work on Day 16, Thursday, and make it home in 45min! Feeling great!
Day 18, sat - Do as many chores before the holidays as possible! Full on grocery shopping, cook a large batch of red beans and rice to eat and last the week (start eating lots of protein in preparation of treatment #3), clean house.
Day 19, sun - another day of chores! 10 loads of laundry, cook another large meal (meatballs!) to eat and freeze, clean house, organize office, and buy & decorate the christmas tree! Ready for my downhill to start.
Day 20, mon - good day at work. The girls' rug for their room comes in so I cook dinner and clean out their room to place it. Becomes more of a complete sanitizing of their room, and wonder why the hell did I start this at the end of my day!
Day 21, tues - feeling great. good day at work, good evening with the girls, and their desks come in. so of course, I'm intent on putting them together before tomorrow's treatment when I'll be out of commission for another 1.5 weeks. Take my steriods.
day2, thur - I have tons of work to do so I push through & work a full day, at night I'm worn out and am thankful for the dinner brought over by a friend.
day3, fri - still tired, but in order to not fall behind at work I push through one last time. I feel the exhaustion take over & when I get home, I completely pass out.
day4, sat - I can barely move. I bring the girls to a playdate, thankful for friends who will watch over them for 8 hours. I rest & feel better. My eyes are bigger than my stomach and I eat what I want. Not a good idea. That night I puke. I realize I didn't heed any of my nutrition advice that I did the first time around and am now paying the price. At least I now know what I shouldn't do.
day5, sun - I take it easy, on both my body & mind.
Day 6, mon - I feel better & pace myself. Full work day & go straight home.
Day 7, tues - good day, work, visit with best friends & home. Rest as much as possible
Day 8, wed - slow work day, bring the girls to the rehearsal of the Camp Broadway kids for Macys, dinner then trip to Macys to write their letters to Santa.
Day 9, Thanksgiving - good day, but sad that I'm missing out on drinking. I never realized how much I enjoyed drinking on turkey day until I couldn't. I throw the football around & feel good.
Day 10, fri - start holiday decorating, visit with best friends - LSU FOOTBALL!
Day 11, sat - grocery shopping, playground with the girls, and visit with best friends.
Day 12, sun - relax and clean the house, dinner out with the girls (friends not twins)
Day 13, mon through Day 17, fri - All is as well as can be. Energy good. Appetite good. Work full days, but still pace myself & am able to keep up with the family at night. I bike to work on Day 16, Thursday, and make it home in 45min! Feeling great!
Day 18, sat - Do as many chores before the holidays as possible! Full on grocery shopping, cook a large batch of red beans and rice to eat and last the week (start eating lots of protein in preparation of treatment #3), clean house.
Day 19, sun - another day of chores! 10 loads of laundry, cook another large meal (meatballs!) to eat and freeze, clean house, organize office, and buy & decorate the christmas tree! Ready for my downhill to start.
Day 20, mon - good day at work. The girls' rug for their room comes in so I cook dinner and clean out their room to place it. Becomes more of a complete sanitizing of their room, and wonder why the hell did I start this at the end of my day!
Day 21, tues - feeling great. good day at work, good evening with the girls, and their desks come in. so of course, I'm intent on putting them together before tomorrow's treatment when I'll be out of commission for another 1.5 weeks. Take my steriods.
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