Today was chemotherapy port placement day. While I'm not usually squeamish about any kind of medical procedure (with the exception of everything that happens at the dentist), I have to admit I was a little nervous about this one. Reading things like this Wikipedia entry that explain the procedure very simply, but that also mention devices being implanted under my skin with a tube running into the jugular vein and then directly towards the heart, well...yikes.
Turns out the implantation was no big deal. So far, my experience with every nurse, imaging tech, and aide in oncology and surgery at Mass General has been great. Maybe these people are just nicer because they know they're dealing with patients who are fighting for their lives, but whatever the reason, I've yet to feel like anyone taking care of me was anything other than professional, competent, and really caring. I even got a hug from one of the older nurses as I was leaving the OR today (well, as much as a hug as you can give someone who's strapped down to a table and who's kind of loopy, but still). The radiologist who put the port in was straightforward, respectful and encouraging. Once again, thanks to some lovely sedatives, I felt absolutely no pain. I had an IV with some antibiotics, got snugly tucked in to a table with lots of sterile drapes and warm blankets, and then had some really weird half-dreams while I was under sedation (yet was also somehow conscious enough to understand what the doctor was saying as he explained what he was doing and when - not sure how that works, or if I imagined the whole thing). I was a little loopy and seasick from the sedatives on the drive home. Now, about 8 hours later, the port site and the right side of my neck are a little sore, but there's no sharp pain. It's about the way you feel if you have a bad bruise, or have pulled a muscle lifting something the wrong way. I had visions of sharp pain from bleeding incisions - not at all. If you're about to get one of these things, fear not. You may be achy, but for me the worst feeling right now is the itchy adhesive that's holding down these dressings. I can live with that.
So now I'm all set for the real treatment to start. I'll go in for a radiation simulation tomorrow (a test run with imaging but no actual "zapping," as my kids are calling it), then a chemotherapy teaching session during which I'll learn how to maintain the port and manage my portable chemo pump, and then on Wednesday morning, the fun begins. Bloodwork at 8:30, first chemo at 9, first radiation at 9:45. I'm ready to start scaring this tumor AWAY. If everything else goes as smoothly as the port placement did, this will all be a breeze. :)
Monday, January 31, 2011
Friday, January 28, 2011
Doggone It
Cancer takes all the fun out of being cynical.
At the risk of turning into this guy, I have to say that it's interesting how much easier it is for me to feel good about the world these days. I've said to a few people that this diagnosis is, in its own way, a gift (this is usually the point at which they get the "Oh, God, maybe it's spread to her brain" look on their faces). But I'm sane, as far as I can tell, and also serious. When you're faced, even for a moment, with the very real fear that you might lose everything, you realize how much you have. And when you get past that immediate fear, it makes lots of small annoyances disappear.
Don't get me wrong - I haven't suddenly become a smiling bundle of joy and optimism. I still find myself yelling, "JUST. PUT. YOUR. SHOES. ON." at my kids when it's taking us what feels like hours to get out the door in the morning. And I still want to slap people who say that global warming must be a myth because it snowed last night. But I've found myself feeling much more tolerant of things that might have made me furious a month ago, because really, how much does it matter? It turns out that people are basically pretty nice. When they find out you're facing something really scary, it seems like everyone offers love and support. Not just people who know me well, old friends and relatives; everyone from the principal at my daughter's school to the clerk at the post office to a musician I'm a fan of and have never even met have offered to drop everything and help. I find it difficult to complain when I think about all this. I have a huge network of people who will pray, meditate, drive my kids around, run errands for me, put up with really unpleasant stories about medical procedures, whatever. I live in Boston, where I have easy access to some of the world's best medical treatment. We have good health insurance. I will be OK. Just knowing all this, without anyone even lifting a finger to do anything else, has been incredibly powerful for me.
I've never been a fan of positive affirmations and overly sentimental inspirational quotes; I've always been a little too cranky to see that stuff as anything other than decoration. But I've stopped yelling at other drivers in bad traffic, at least. Life really is too short.
At the risk of turning into this guy, I have to say that it's interesting how much easier it is for me to feel good about the world these days. I've said to a few people that this diagnosis is, in its own way, a gift (this is usually the point at which they get the "Oh, God, maybe it's spread to her brain" look on their faces). But I'm sane, as far as I can tell, and also serious. When you're faced, even for a moment, with the very real fear that you might lose everything, you realize how much you have. And when you get past that immediate fear, it makes lots of small annoyances disappear.
Don't get me wrong - I haven't suddenly become a smiling bundle of joy and optimism. I still find myself yelling, "JUST. PUT. YOUR. SHOES. ON." at my kids when it's taking us what feels like hours to get out the door in the morning. And I still want to slap people who say that global warming must be a myth because it snowed last night. But I've found myself feeling much more tolerant of things that might have made me furious a month ago, because really, how much does it matter? It turns out that people are basically pretty nice. When they find out you're facing something really scary, it seems like everyone offers love and support. Not just people who know me well, old friends and relatives; everyone from the principal at my daughter's school to the clerk at the post office to a musician I'm a fan of and have never even met have offered to drop everything and help. I find it difficult to complain when I think about all this. I have a huge network of people who will pray, meditate, drive my kids around, run errands for me, put up with really unpleasant stories about medical procedures, whatever. I live in Boston, where I have easy access to some of the world's best medical treatment. We have good health insurance. I will be OK. Just knowing all this, without anyone even lifting a finger to do anything else, has been incredibly powerful for me.
I've never been a fan of positive affirmations and overly sentimental inspirational quotes; I've always been a little too cranky to see that stuff as anything other than decoration. But I've stopped yelling at other drivers in bad traffic, at least. Life really is too short.
Wednesday, January 26, 2011
Tom Petty Was Right
So it turns out that, after you live with a cancer diagnosis for a while, the challenge becomes wondering what the doctors will decide to do about it, not worrying about whether you'll live through it. So, yes, the waiting is in fact the hardest part.
I walked around for a while with a knot in my stomach as we waited to find out how to proceed. Here's how it worked: Step 1: colonoscopy. Step 2 (the following week): CT/MRI scans to determine whether this cancer has metastasized to any other organs, and 24 hours to wait for that answer (which was, thankfully, no). Step 3: wait a few more days to let the surgeon consult with some other doctors to decide whether to operate immediately or start with a different approach. Step 4, about two weeks after the initial news: meet with an oncology team to talk about strategy and scheduling.
It turns out that it's a pretty standard approach to try to shrink these kind of tumors before surgery if they have advanced past Stage 1. Mine is medium-sized, and there are a few enlarged lymph nodes visible on my MRI images, so we're going to do 6 weeks of pre-op (otherwise known as "neoadjuvant") treatment. I will have radiation 5 days a week, and will get to carry around a portable chemotherapy pump, which should make things interesting for a while. I've put a moratorium on my internet reading from here on out, but the things I've seen so far make me feel pretty good. If the tumor responds to the radiation and shrinks significantly, it looks like survival rates are comparable to those for Stage 0/1 tumors - in other words, high 90 percents. I am choosing to believe that the radiation will zap this nasty thing away for me, and that I'll be just fine. :)
After meeting with the oncologists to discuss the plan, I went in the next day for a CT scan to plan therapy and to get my little tattoos for the radiation itself. Just 3 small dots, but the needles stung enough to make me confident that I will not be having anything tattooed anywhere else for now. Next step will be having a chemo port installed. That's a little line that's inserted under my collarbone to provide easy access for IV meds, saving my veins from constant punctures. I'm a little squeamish about the idea of this, even though I'm not generally needle-phobic, and I remember my dad's port well (my parents taught me how to help him maintain it and even to help administer some of his meds). Just need to get through that one.
I am feeling pretty good right now. I'm not scared, just focused on getting this treatment started. I feel fine physically, apart from a slightly sore rear after yesterday's poking and prodding. I'm trying to continue running a little bit every day. The team tells me I probably won't have much in the way of significant side effects during this 6 week stretch, apart from some fatigue that will likely hit towards the end.
Here's how I think about it. February is pretty horrible anyway, so why not put the month to good use? It will give me something to do besides look out at the dirty old snow and feel desperate for spring. May as well use the time to get myself better!
I walked around for a while with a knot in my stomach as we waited to find out how to proceed. Here's how it worked: Step 1: colonoscopy. Step 2 (the following week): CT/MRI scans to determine whether this cancer has metastasized to any other organs, and 24 hours to wait for that answer (which was, thankfully, no). Step 3: wait a few more days to let the surgeon consult with some other doctors to decide whether to operate immediately or start with a different approach. Step 4, about two weeks after the initial news: meet with an oncology team to talk about strategy and scheduling.
It turns out that it's a pretty standard approach to try to shrink these kind of tumors before surgery if they have advanced past Stage 1. Mine is medium-sized, and there are a few enlarged lymph nodes visible on my MRI images, so we're going to do 6 weeks of pre-op (otherwise known as "neoadjuvant") treatment. I will have radiation 5 days a week, and will get to carry around a portable chemotherapy pump, which should make things interesting for a while. I've put a moratorium on my internet reading from here on out, but the things I've seen so far make me feel pretty good. If the tumor responds to the radiation and shrinks significantly, it looks like survival rates are comparable to those for Stage 0/1 tumors - in other words, high 90 percents. I am choosing to believe that the radiation will zap this nasty thing away for me, and that I'll be just fine. :)
After meeting with the oncologists to discuss the plan, I went in the next day for a CT scan to plan therapy and to get my little tattoos for the radiation itself. Just 3 small dots, but the needles stung enough to make me confident that I will not be having anything tattooed anywhere else for now. Next step will be having a chemo port installed. That's a little line that's inserted under my collarbone to provide easy access for IV meds, saving my veins from constant punctures. I'm a little squeamish about the idea of this, even though I'm not generally needle-phobic, and I remember my dad's port well (my parents taught me how to help him maintain it and even to help administer some of his meds). Just need to get through that one.
I am feeling pretty good right now. I'm not scared, just focused on getting this treatment started. I feel fine physically, apart from a slightly sore rear after yesterday's poking and prodding. I'm trying to continue running a little bit every day. The team tells me I probably won't have much in the way of significant side effects during this 6 week stretch, apart from some fatigue that will likely hit towards the end.
Here's how I think about it. February is pretty horrible anyway, so why not put the month to good use? It will give me something to do besides look out at the dirty old snow and feel desperate for spring. May as well use the time to get myself better!
The Journey Begins (a long introduction)
January 14, 2011: Well. Who would have thought I’d be here?
I am 42 years old. I’ve never been really sick with anything other than a bad cough or the flu in my life. I’m fanatical about good food; I have a ridiculously healthy diet. I get a reasonable amount of exercise and have even started in the past year to think about training for a marathon.
And then, on January 7, I learned that I had colorectal cancer. First of all - cancer? Excuse me, but no, thank you. I’m young and healthy and I have none of the traditional risk factors for this disease. And second - of all the parts of the body to have to talk about, did I have to end up with cancer in this one? Sheesh. If humor helps with the healing process, I should be all set, because with 6 and 9 year old kids, there’s no shortage of butt jokes in this house.
My father died in his early 40s after a struggle with esophageal cancer, so in a way, I'm not entirely surprised to be facing this. As I approached my 40th birthday, I found myself wondering whether I'd manage to sneak through middle age without cancer noticing me, but no such luck. Still, it never really seemed like it would happen. When I got the news, I spent about 24 hours feeling alternately shocked, terrified, and incredulous. I started to imagine what would happen if my kids had to grow up without me. I had horrible images of a painful wasting death in the hospital. I waited to wake up from this bad dream. And then, while putting my 6 year old daughter to bed one night, I realized that there’s one thing that will make me fight harder than anything else I can imagine: threaten my kids, and watch out. If I don’t get through this alive, they will suffer, and I will NOT let anything hurt my children if I can help it. So here I go.
For now, here's where the story begins (warning: it's not possible to discuss rectal cancer without some embarrassing and gross details, including facts about poop and references to exams and procedures that most of us would rather not imagine. I'm over the embarrassment now, as I've got other things to worry about). I am sharing the gory details because plenty of people might experience this and write it off as nothing serious. I encourage anyone who has even remotely similar symptoms to go see a doctor NOW.
It started in August 2010. I thought I had developed some hemorrhoids, because I had some slight bleeding when I went to the bathroom. Most women who've given birth have experienced the joy of hemorrhoids, and know that they usually heal on their own, so I decided to add some fiber to my diet and be done with it. The bleeding came and went over the next few weeks. I had no real pain or discomfort, and didn't give it much thought until October, when I had a sinus infection and a really bad cough. I saw my doctor in search of some heavy duty cough medicine, and mentioned the bleeding to her as an afterthought. She confirmed that sometimes a persistent forceful cough can aggravate hemorrhoids, but after thinking about my dad's history, she suggested a colonoscopy, just in case.
Next step, in November, a lovely little procedure called an anoscopy. You can Google it if you're wondering; it's pretty much what you'd imagine. The result of that was that the surgeon saw a few small internal hemorrhoids, and nothing else. No big deal - we scheduled a colonoscopy just to complete things, but I was sure I had no real reason to worry.
Christmas came and went, and in early January, I went in for the colonoscopy. My husband and I laughed a lot about the prep for the procedure and the awkwardness of the whole thing. I went to the hospital, had an IV and some really lovely sedatives, and settled onto the exam table. I don't know how deeply I was really out, because at some point I heard the words "radiation and chemo" and I opened my eyes to a fascinating view of the inside of my colon on a TV monitor, and then I drifted off again. When I woke in the recovery area, I had a vague idea that something might be really wrong. And, in fact, something was. Dr. Shellito waited for my husband to arrive and then gave us the news that he'd found a rectal tumor, and that it was probably cancer. Well. It's going to be quite an interesting ride.
I am 42 years old. I’ve never been really sick with anything other than a bad cough or the flu in my life. I’m fanatical about good food; I have a ridiculously healthy diet. I get a reasonable amount of exercise and have even started in the past year to think about training for a marathon.
And then, on January 7, I learned that I had colorectal cancer. First of all - cancer? Excuse me, but no, thank you. I’m young and healthy and I have none of the traditional risk factors for this disease. And second - of all the parts of the body to have to talk about, did I have to end up with cancer in this one? Sheesh. If humor helps with the healing process, I should be all set, because with 6 and 9 year old kids, there’s no shortage of butt jokes in this house.
My father died in his early 40s after a struggle with esophageal cancer, so in a way, I'm not entirely surprised to be facing this. As I approached my 40th birthday, I found myself wondering whether I'd manage to sneak through middle age without cancer noticing me, but no such luck. Still, it never really seemed like it would happen. When I got the news, I spent about 24 hours feeling alternately shocked, terrified, and incredulous. I started to imagine what would happen if my kids had to grow up without me. I had horrible images of a painful wasting death in the hospital. I waited to wake up from this bad dream. And then, while putting my 6 year old daughter to bed one night, I realized that there’s one thing that will make me fight harder than anything else I can imagine: threaten my kids, and watch out. If I don’t get through this alive, they will suffer, and I will NOT let anything hurt my children if I can help it. So here I go.
For now, here's where the story begins (warning: it's not possible to discuss rectal cancer without some embarrassing and gross details, including facts about poop and references to exams and procedures that most of us would rather not imagine. I'm over the embarrassment now, as I've got other things to worry about). I am sharing the gory details because plenty of people might experience this and write it off as nothing serious. I encourage anyone who has even remotely similar symptoms to go see a doctor NOW.
It started in August 2010. I thought I had developed some hemorrhoids, because I had some slight bleeding when I went to the bathroom. Most women who've given birth have experienced the joy of hemorrhoids, and know that they usually heal on their own, so I decided to add some fiber to my diet and be done with it. The bleeding came and went over the next few weeks. I had no real pain or discomfort, and didn't give it much thought until October, when I had a sinus infection and a really bad cough. I saw my doctor in search of some heavy duty cough medicine, and mentioned the bleeding to her as an afterthought. She confirmed that sometimes a persistent forceful cough can aggravate hemorrhoids, but after thinking about my dad's history, she suggested a colonoscopy, just in case.
Next step, in November, a lovely little procedure called an anoscopy. You can Google it if you're wondering; it's pretty much what you'd imagine. The result of that was that the surgeon saw a few small internal hemorrhoids, and nothing else. No big deal - we scheduled a colonoscopy just to complete things, but I was sure I had no real reason to worry.
Christmas came and went, and in early January, I went in for the colonoscopy. My husband and I laughed a lot about the prep for the procedure and the awkwardness of the whole thing. I went to the hospital, had an IV and some really lovely sedatives, and settled onto the exam table. I don't know how deeply I was really out, because at some point I heard the words "radiation and chemo" and I opened my eyes to a fascinating view of the inside of my colon on a TV monitor, and then I drifted off again. When I woke in the recovery area, I had a vague idea that something might be really wrong. And, in fact, something was. Dr. Shellito waited for my husband to arrive and then gave us the news that he'd found a rectal tumor, and that it was probably cancer. Well. It's going to be quite an interesting ride.
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