Why I'm up AGAIN at 6 am. Nightmares. I am dancing, and I even went out salsa dancing on Tuesday night - it helps. Trouble is I'm getting really physically exhausted.
I'm going through something really emotionally hard at the moment, and it's giving me bad dreams. wertperch and I have never told anyone else much about this, but back in 2005 when I was first diagnosed with breast cancer, I was pregnant; probably conceived when I was in England. When I wasdiagnosed, the doc said there was no way I could postpone chemo for 7 months, and also no way a fetus would survive the chemotherapy. Probable miscarriage, undoubtedy birth defects, yucky stuff. Adriamycin, in particular, is a class C teratogen. In other words, it can cause severe birth defects. In addition, the pregnancy hormones at the time were causing the cancer to progress faster. I had an estrogen positive cancer, meaning estrogen made the cancer grow more quickly. I also had the most aggressive cancer cells , by staging. Very mutated, growing very fast. "We're going to take a big ba, and we are going to hit you as hard as we can." My doctor said it was pretty much a choice - if I wanted to hang on to the baby, the cancer would probably kill me first. Kevin and I talked about it, and he said I want you more than I want that baby, and Tessie and I need you more. It was a pretty black and white decision at the time.
So I had an abortion. A D&C, about six weeks into the chemotherapy. It was actually about a week after wertperch and I got married, in May of 2005. My doctor kindly postponed it a week, so I wasn't in physical discomfort during the wedding. (Keeping in mind that I was flooded with chemotherapy drugs at the time.)
Well, yesterday the imp saw me crying, talking to a friend in ballet class, and she asked me why - so I told her. And she is furious with me - for not telling her, for not having the baby, for not getting her opinion at the time, for potentially having the baby and dying and leaving her. I realize this makes no logical sense, but it's also a huge loss for her. She wants a baby brother or sister more than anything else in the world. Remember, she was 6 at the time.What is the right time to tell her? There isn't. There never was, and there isn't. And it's bringing up this incredible amount of sadness and loss for all of us, on top of everything else.
Kevin and I wanted that baby so badly, I haven't the words to express it.
The part they forgot to tell me was that chemotherapy destroys both ovaries and eggs. If I had known ahead of time, I potentially could at least have harvested some eggs, in the hopes of carrying a pregnancy later. The chemotherapy made me perimenopausal, so now there's no chance of getting pregnant - and the odds of having bad birth defects if I did are really high. I think the doctors didn't offer it because since my cancer was estrogen positive (then) pregnancy hormones would be bad, no matter when. Now that the cancer has mutated, it's no longer an issue, but it's pretty moot at this point - I'm 45, the ovaries are toast, the eggs, well, what was the old ad? This is your brain on drugs? Chemo kills fast dividing cells, and it doesn't differentiate between those we want, and those we don't want.
Needless to say, I had a rough night. Bad dreams, where I was at an adoption agency that more or less resembled the DMV, and they pretty much just said, your paperwork is not in order, so you can't have that baby. Sorry. They took a picture of my license plate, and the tags were expired, and they would not tell me what paperwork was missing - I "was just supposed to know that". Sorry. Then they'd send me to another line, where every clerk looked like Roz from Monsters, Inc., and they all went on coffee break when I got to the front. You know the drill.
Kevin and I didn't talk about it at all until at least a year later - we were so overwhelmed with all the other emotional repercussions, I think we just set it aside, and left it for later. I finally told a close friend who was struggling with infertility about a year or so ago. Secondary infertility is different from primary infertility, but it's still real, and it was still a loss. Of a very, very wanted baby.
So I'm sad this morning. Weepy. Maybe making a quilt might help. I could make a little baby doll quilt. I think I need to grieve, and acknowledge the loss somehow. Her name would have been Caroline Grace, or Helen Grace, if a girl. Wertperch and I never decided on a boy's name.
I don't, these days, have a lot of fear of death. I'm physically so strong, that any chemical, any radiation, any star wars technology they throw at me, I seem to just sort of bulldoze my way through. I don't suffer a lot from the emotional baggage during treatment, I seem to save that up for when I'm between bouts of chemo. But oh, I wanted that baby.
That baby is the biggest thing I gave up because of breast cancer. Losing a breast was a piece of cake in comparison. Breasts are mostly decorative, and the fake ones nowadays are pretty good. I can even adjust the size, depending on whether I'm doing yoga, or going out salsa dancing, and looking a little more bimbo.
Reconstruction is just not really an option. MORE surgery? Elective surgery? That puts me back in the hospital for a week? I'm more likely to visit Machu Pichu. I think I'm much more likely to get a tattoo of a tough old wisteria over the scar than let them cut me up even more. But I don't know what tattoo to put over the other scar, the invisible one.
Baby, we miss you. I'm sorry.
This post is for Sarah, and for Grace.
Showing posts with label metastatic. Show all posts
Showing posts with label metastatic. Show all posts
Thursday, February 25, 2010
Friday, January 29, 2010
Left parietal lobe
Third time's the charm, apparently.
I have a "suspicious mass" in my brain. Suspicious, as in, a 2 centimeter mass that is presumably metastasized breast cancer.
I'm okay, for the moment. Not entirely surprised, but it is going to mean more treatment, probably gamma knife surgery, and another round of chemotherapy. I wonder what the record is?
The good news is (and I know you'll kid me for this) again, we caught it early. I'm learning to really trust my gut instinct that something is not quite right. I've been having more headaches than usual - this is a pretty minor thing, and not usually how a brain tumor would show up. Good thing I noodged my oncologist into the MRI anyway. Hooray for early detection.
As usual, send me goofy snail mail, and send love and support to wertperch. More as soon as I know anything.
Love,
grundoon
I have a "suspicious mass" in my brain. Suspicious, as in, a 2 centimeter mass that is presumably metastasized breast cancer.
I'm okay, for the moment. Not entirely surprised, but it is going to mean more treatment, probably gamma knife surgery, and another round of chemotherapy. I wonder what the record is?
The good news is (and I know you'll kid me for this) again, we caught it early. I'm learning to really trust my gut instinct that something is not quite right. I've been having more headaches than usual - this is a pretty minor thing, and not usually how a brain tumor would show up. Good thing I noodged my oncologist into the MRI anyway. Hooray for early detection.
As usual, send me goofy snail mail, and send love and support to wertperch. More as soon as I know anything.
Love,
grundoon
Wednesday, January 28, 2009
Ten down, five to go
I visited my oncologist on Monday, and it's all good news.
The CT scan turned out really well - all 7 lymph nodes have shrunk, and are either undetectable, or "normal", which means smaller than 1 cm. An "optimal" response, according to my doc. The chemotherapy is working very well. After a discussion with my doctor, we've decided to tack on an extra three sessions of chemo after the next two, which mean instead of having two more, I have five more, taking me to March 6.
There's a small hope that the extra chemo will knock the cancer out completely (about 10%, if you like statistics), so I'm trading off feeling like shit now for the hope that it goes away, or I go into remission for longer. I'm shooting for the long tail here, people, the end of the bell curve that either manages to get cured, or lives for a reeeaally long time. 20 or more years.
Fact is, I fall into a little bit of a statistical crack - somewhere between a regional recurrence and a metastatic recurrence. Regional would be confined to the axial lymph nodes, or in the area of the first surgery. A true metastatic recurrence would have shown up in another organ. The further I drill down into the statistics, the less they seem to apply to me. So, truth is, there's no way to predict how I'm going to do. Now, they treat me as if it's metastatic disease, just because I've already used up some treatment options - can't do any more radiation to that are, can't do hormone therapy. But I've dug around, and have found very few discussions of a recurrence like mine. So I think I'll just plan on being an exception to the statistics.
Spirits are good, I think Kevin is more worn down than I am. If you are local, take him out for a beer or a hike.
Love to all,
grundy
The CT scan turned out really well - all 7 lymph nodes have shrunk, and are either undetectable, or "normal", which means smaller than 1 cm. An "optimal" response, according to my doc. The chemotherapy is working very well. After a discussion with my doctor, we've decided to tack on an extra three sessions of chemo after the next two, which mean instead of having two more, I have five more, taking me to March 6.
There's a small hope that the extra chemo will knock the cancer out completely (about 10%, if you like statistics), so I'm trading off feeling like shit now for the hope that it goes away, or I go into remission for longer. I'm shooting for the long tail here, people, the end of the bell curve that either manages to get cured, or lives for a reeeaally long time. 20 or more years.
Fact is, I fall into a little bit of a statistical crack - somewhere between a regional recurrence and a metastatic recurrence. Regional would be confined to the axial lymph nodes, or in the area of the first surgery. A true metastatic recurrence would have shown up in another organ. The further I drill down into the statistics, the less they seem to apply to me. So, truth is, there's no way to predict how I'm going to do. Now, they treat me as if it's metastatic disease, just because I've already used up some treatment options - can't do any more radiation to that are, can't do hormone therapy. But I've dug around, and have found very few discussions of a recurrence like mine. So I think I'll just plan on being an exception to the statistics.
Spirits are good, I think Kevin is more worn down than I am. If you are local, take him out for a beer or a hike.
Love to all,
grundy
Saturday, November 15, 2008
Chemotherapy
So what's chemo really like, you ask? Well, dearly beloved, let me tell you at least of my own experience.
Kevin and I usually arrive around 9:30 am, although this is going to change. What I'm describing is a fairly typical regimen for breast cancer, although there are LOTS of different protocols, and other types of cancer have their own.
The first bit, which yesterday didn't go as smoothly as I'd hoped, is to access a vein. I had a port-a-cath installed a week ago, which is a little subdermal gizmo with a rubber top, that's attached to a tube running into my vena cava. That means generally they can get a blood sample for labs, and give me chemo and the associated drugs, through the port, rather than using a needle in my arm. I dislike getting poked with needles in the arm every single week, and I generally find an IV uncomfortable even though they are supposed to be painless, so I like having a port.
Alas, this week it was not to be. They tried to access the port, but since the surgery is only a week old, there's still some swelling, so they couldn't hit it. Three tries, and the nurses gave up. They don't like poking around any more than necessary. So the old IV it was. Always in my left arm, and I tell you, I'm running out of veins.
Then they give a passle of pre-meds, which decrease the risk and the discomfort of chemo. Notice I said decrease, not eliminiate.
Mine looks like this - tagamet, to decrease stomach acid. I sometimes ask for that first, since it's common to arrive with an upset stomach. Benadryl, to prevent a major allergic reaction - anaphalaxia - to the chemo drug or drugs. Dexamethazone, a steroid, also to prevent an allergic reaction, and to make the chemo more effective. Ativan, an anti-anxiety drug, both to offset a manic reaction to the dexametnazone, and also anti-nausera - most tranquilizers are also secondarily anto-nausea drugs.
These take about two hours - I try to eat lunch before the atavan and benadryl hit - in other words, when the room starts spinning. Yesterday it was a shrimp burrito, and it was heaven.
Then they start the taxol. First off, many chemo drugs are caustic, so the nurses don extra-heavy duty protective clothing. Imagine a hazmat outfit, but printed in happy happy pinks and blues, face mask with an eye shield, and heavy duty, elbow length rubber gloves. I want to steal one of these for next years' halloween costume.
The taxol takes 90 minutes, and generally I sleep through most of it. One of the nastier side effects of taxol is that it seems to have weird emotional side effects - I almost always cry about 30 minutes into it, and I'm typically weepy for about two to three days after, until it's back out of my bloodstream. Hard on my soul, and hard on the people taking care of me.
On this regimen, the next thing is Avastin. This is not a traditional chemo drug (poison - kills all fast dividing cells), but an antiangiogenic. Cancer cells, in order to become tumors, have to fool your body into believing that they are normal cells, and to grow a new blood supply. Avastin prevents new capillaries from forming, so new tumors get starved. Very nifty trick, that.
First time I had it, it took 90 minutes. This time they went to 60 minutes, next time I can go to 30, if i don't have a bad reaction. Again, generally sleep through it, but I have movies and books on CD just in case.
All told, takes around six hours. Then they unplug me, and I stagger home in a fog of drugs. One of these tends to wire me up, so I don't always sleep well the night after the chemo. Also makes me feel really hot and flushed - I look very pink and healthy, ironically.
It seems to take about three days to wash back out of my system. The second day after is usually the worst - energy level is lowest, nausea is highest. I've never ACTUALLY hurled from chemo, I take a VERY expensive anti-nausea drug called Zofran, but in some ways feeling like you are going to hul but never actually doing it is almost worse. At least when you have flu, and you DO hurl, you feel better for a little while after. This just goes on continuously. Bleagh.
Day four, Tuesday, so far I have felt miraculously better. Not 100%, but far better than the day before. I get two more good days, then back to the grind.
Kevin and I usually arrive around 9:30 am, although this is going to change. What I'm describing is a fairly typical regimen for breast cancer, although there are LOTS of different protocols, and other types of cancer have their own.
The first bit, which yesterday didn't go as smoothly as I'd hoped, is to access a vein. I had a port-a-cath installed a week ago, which is a little subdermal gizmo with a rubber top, that's attached to a tube running into my vena cava. That means generally they can get a blood sample for labs, and give me chemo and the associated drugs, through the port, rather than using a needle in my arm. I dislike getting poked with needles in the arm every single week, and I generally find an IV uncomfortable even though they are supposed to be painless, so I like having a port.
Alas, this week it was not to be. They tried to access the port, but since the surgery is only a week old, there's still some swelling, so they couldn't hit it. Three tries, and the nurses gave up. They don't like poking around any more than necessary. So the old IV it was. Always in my left arm, and I tell you, I'm running out of veins.
Then they give a passle of pre-meds, which decrease the risk and the discomfort of chemo. Notice I said decrease, not eliminiate.
Mine looks like this - tagamet, to decrease stomach acid. I sometimes ask for that first, since it's common to arrive with an upset stomach. Benadryl, to prevent a major allergic reaction - anaphalaxia - to the chemo drug or drugs. Dexamethazone, a steroid, also to prevent an allergic reaction, and to make the chemo more effective. Ativan, an anti-anxiety drug, both to offset a manic reaction to the dexametnazone, and also anti-nausera - most tranquilizers are also secondarily anto-nausea drugs.
These take about two hours - I try to eat lunch before the atavan and benadryl hit - in other words, when the room starts spinning. Yesterday it was a shrimp burrito, and it was heaven.
Then they start the taxol. First off, many chemo drugs are caustic, so the nurses don extra-heavy duty protective clothing. Imagine a hazmat outfit, but printed in happy happy pinks and blues, face mask with an eye shield, and heavy duty, elbow length rubber gloves. I want to steal one of these for next years' halloween costume.
The taxol takes 90 minutes, and generally I sleep through most of it. One of the nastier side effects of taxol is that it seems to have weird emotional side effects - I almost always cry about 30 minutes into it, and I'm typically weepy for about two to three days after, until it's back out of my bloodstream. Hard on my soul, and hard on the people taking care of me.
On this regimen, the next thing is Avastin. This is not a traditional chemo drug (poison - kills all fast dividing cells), but an antiangiogenic. Cancer cells, in order to become tumors, have to fool your body into believing that they are normal cells, and to grow a new blood supply. Avastin prevents new capillaries from forming, so new tumors get starved. Very nifty trick, that.
First time I had it, it took 90 minutes. This time they went to 60 minutes, next time I can go to 30, if i don't have a bad reaction. Again, generally sleep through it, but I have movies and books on CD just in case.
All told, takes around six hours. Then they unplug me, and I stagger home in a fog of drugs. One of these tends to wire me up, so I don't always sleep well the night after the chemo. Also makes me feel really hot and flushed - I look very pink and healthy, ironically.
It seems to take about three days to wash back out of my system. The second day after is usually the worst - energy level is lowest, nausea is highest. I've never ACTUALLY hurled from chemo, I take a VERY expensive anti-nausea drug called Zofran, but in some ways feeling like you are going to hul but never actually doing it is almost worse. At least when you have flu, and you DO hurl, you feel better for a little while after. This just goes on continuously. Bleagh.
Day four, Tuesday, so far I have felt miraculously better. Not 100%, but far better than the day before. I get two more good days, then back to the grind.
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