I've read a lot of cancer blogs over the years, and it's always an issue of concern to me when a blog stops abruptly. Because you wonder...you know what you wonder.
I don't know if anyone ever stumbles upon this blog. But in case it comes up when somebody is searching about their own cancer, or a loved one's ocular melanoma, I don't want them to find a big nothing at the end and think the worst.
It's been 5 1/2 years. I'm still standing. I still have visual symptoms and my vision in my right eye is lousy. But I'm here. The reason I haven't written is...life. (And, if we're going to be honest, Candy Crush.)
Since I've last written, I've had a kid graduate high school and complete a year of college. My husband and I celebrated our 20 year anniversary. I turned fifty. I've gotten two great-nephews and a great-niece. And yes, I've lost a couple of family members, one to cancer.
In my last post, I probably sounded a little bitter. That's because the husband of one of my best friends died too young suddenly a few days after the start of the year. The memory of that is still painful (much more so for my friend), but in the intervening three-plus years she met a different, equally wonderful man and married him. In other words: searing loss happens and we are never the same, but we can be happy again.
If you've found this little blog because we have that cancer thing in common, I'm so sorry. But know that there is cause for hope, and although it may seem hard to believe now, cause for joy.
Tuesday, May 8, 2018
Wednesday, January 7, 2015
Seven Days In
So far, the baby new year has not been as darling as hoped, more like the love child of Ann Coulter and Idi Amin, with colic and a blistering diaper rash. If you prefer to stick with the vehicle metaphor, so far it's been like a souped-up El Camino driven by a paranoid meth addict. It's already veered out of control and taken out a couple of innocent bystanders.
I really do hope, when we get to heaven, that there's an orientation session where all these things will be explained: why the wicked prosper, and good, loving people are cut down in their prime. Sometimes, in flashes, I think I understand, from an intellectual standpoint--but it still makes me want to throw up. I try to remember my five-word New Year's resolution: "Wait. More will be revealed." But waiting does not come easy to me. I want answers, and restitution for those who have lost things that cannot be compensated for.
I know I am a child of God, but not one of the docile ones that sits quietly at Jesus' knee in the pictures. I'm the foot-stamping toddler throwing a tantrum right outside the frame. My vocabulary is equal parts "NO!" and "WHY?" I believe with all my heart that God loves me, but I also believe He is a little relieved when I fall asleep and finally shut up for the day.
When my own kids were toddlers, they were by turns frustrating and frustrated. The only saving grace was that I knew, as they matured, they would understand and master the things that infuriated their baby selves. I hope the same is true for me. I hope someday this world makes more sense, is more orderly and less of a howling wilderness. I hope I develop more patience, and kindness, and a better attitude. I hope I grow up, and mellow.
And I really hope this squalling, sputtering, shit-spewing baby of a new year does, too.
I really do hope, when we get to heaven, that there's an orientation session where all these things will be explained: why the wicked prosper, and good, loving people are cut down in their prime. Sometimes, in flashes, I think I understand, from an intellectual standpoint--but it still makes me want to throw up. I try to remember my five-word New Year's resolution: "Wait. More will be revealed." But waiting does not come easy to me. I want answers, and restitution for those who have lost things that cannot be compensated for.
I know I am a child of God, but not one of the docile ones that sits quietly at Jesus' knee in the pictures. I'm the foot-stamping toddler throwing a tantrum right outside the frame. My vocabulary is equal parts "NO!" and "WHY?" I believe with all my heart that God loves me, but I also believe He is a little relieved when I fall asleep and finally shut up for the day.
When my own kids were toddlers, they were by turns frustrating and frustrated. The only saving grace was that I knew, as they matured, they would understand and master the things that infuriated their baby selves. I hope the same is true for me. I hope someday this world makes more sense, is more orderly and less of a howling wilderness. I hope I develop more patience, and kindness, and a better attitude. I hope I grow up, and mellow.
And I really hope this squalling, sputtering, shit-spewing baby of a new year does, too.
Monday, January 5, 2015
Stay Strong
Boy, if there are two words I can't stand hearing together, it's "Stay strong." People say it all the time to cancer patients, but they say it to other people facing awful circumstances, too. It's almost always said with the very best of intentions, and when the speaker doesn't know what else to say in the face of the immense struggle the listener is facing.
Sometimes, what the speaker means is, "I wish you strength. I know you have to deal with something terrible, and I want to help you, but I have no idea how, because this is so huge. I'm hoping that my love, and the love of others, will help you tap some secret well of strength you didn't know you had, and you'll come through this awful time intact."
Sometimes, the speaker means, "Something huge and terrifying has happened to you, and it terrifies me, too. I don't know how I'll react if you fall apart. I'm afraid I'll fall apart as well. I need you to stay strong so I don't have to face that possibility."
Sometimes, people who say, "Stay strong," mean both of those things without realizing it.
Many hearers can take the phrase in the best possible light, and that's great, but I worry about the other people. What if they can't stay strong? What if they have used up all their strength just surviving to this moment and they desperately need to know it's safe to break down, that someone else will patiently wait and help them figure out how to put things back together again? What if you say, "Stay strong," and they hear, "Don't break down. Not here. I can't take it?"
Here is what I'd rather say: I'm here for you. I'll cry with you. Don't feel like you have to be strong for me, or for anyone. The only way out is through, and I know it will be hard. But I promise, no matter what, you'll never be alone.
Sometimes, what the speaker means is, "I wish you strength. I know you have to deal with something terrible, and I want to help you, but I have no idea how, because this is so huge. I'm hoping that my love, and the love of others, will help you tap some secret well of strength you didn't know you had, and you'll come through this awful time intact."
Sometimes, the speaker means, "Something huge and terrifying has happened to you, and it terrifies me, too. I don't know how I'll react if you fall apart. I'm afraid I'll fall apart as well. I need you to stay strong so I don't have to face that possibility."
Sometimes, people who say, "Stay strong," mean both of those things without realizing it.
Many hearers can take the phrase in the best possible light, and that's great, but I worry about the other people. What if they can't stay strong? What if they have used up all their strength just surviving to this moment and they desperately need to know it's safe to break down, that someone else will patiently wait and help them figure out how to put things back together again? What if you say, "Stay strong," and they hear, "Don't break down. Not here. I can't take it?"
Here is what I'd rather say: I'm here for you. I'll cry with you. Don't feel like you have to be strong for me, or for anyone. The only way out is through, and I know it will be hard. But I promise, no matter what, you'll never be alone.
Thursday, January 1, 2015
Keep on Truckin'
Some years back, a friend of mine recounted to me the New Year's Eve tradition of burning the old year's calendar in the fireplace after a particularly bad year. The idea sat uneasy with me, though I could never quite articulate why. I suppose the closest I can come to an explanation is, "Don't tempt fate." Those noises from the fireplace might just sound like the crackle of pages curling and burning, but if you listen closely, you can hear the whisper of the old year saying, "You think I was bad? Wait until you meet my bitch of a little sister."
So I never burned a calendar.
Lately, it occurs to me that there's a second reason for not burning the calendar: because it's unfair to the old year. Let me explain.
We have such high hopes for new years. After 365 days that, as an aggregate, did not go quite as hoped, a new year is a positive relief. So bright. So shiny. So un-messed up.
Until, of course, it is. Sooner, usually, rather than later, and then you're stuck with this clunky, nearly-new year that lost much of its value as soon as you drove it off the lot. And you can't sell it on Craigslist, can't trade it, can't get an upgrade for, say, 361 days. No one can. Only cell-phone companies, and possibly Satan, have more airtight contracts than Father Time.
What are you going to do? You can't very well say, "Crap, I dented my new year! I'm just going to sit right here until another one gets delivered." You can't. You have to keep going with the one you have. Maybe you can buff out the scratches a little bit, maybe the damage is so huge that everyone around you can see how badly your year's been dented. They might wonder how you can keep rolling in the face of such a wreck, and you might wonder, too. But on you roll, even if slowly and with much grinding of gears. Through day 89, and 111, and 235. Onward.
There's only one way to get out of your crappy, banged-up dented ride early, and you don't want to take it. If your year gets totaled, so do you.
So if your wreck of a year lurched into the garage last night at 11:59, exhaled a toxic cloud of smoke, and expired, don't kick it and curse it. Be grateful. It got you here, and now you've got a sweet new ride. Make the most of it.
So I never burned a calendar.
Lately, it occurs to me that there's a second reason for not burning the calendar: because it's unfair to the old year. Let me explain.
We have such high hopes for new years. After 365 days that, as an aggregate, did not go quite as hoped, a new year is a positive relief. So bright. So shiny. So un-messed up.
Until, of course, it is. Sooner, usually, rather than later, and then you're stuck with this clunky, nearly-new year that lost much of its value as soon as you drove it off the lot. And you can't sell it on Craigslist, can't trade it, can't get an upgrade for, say, 361 days. No one can. Only cell-phone companies, and possibly Satan, have more airtight contracts than Father Time.
What are you going to do? You can't very well say, "Crap, I dented my new year! I'm just going to sit right here until another one gets delivered." You can't. You have to keep going with the one you have. Maybe you can buff out the scratches a little bit, maybe the damage is so huge that everyone around you can see how badly your year's been dented. They might wonder how you can keep rolling in the face of such a wreck, and you might wonder, too. But on you roll, even if slowly and with much grinding of gears. Through day 89, and 111, and 235. Onward.
There's only one way to get out of your crappy, banged-up dented ride early, and you don't want to take it. If your year gets totaled, so do you.
So if your wreck of a year lurched into the garage last night at 11:59, exhaled a toxic cloud of smoke, and expired, don't kick it and curse it. Be grateful. It got you here, and now you've got a sweet new ride. Make the most of it.
Wednesday, December 31, 2014
Resolved
Well, here we are again, folks. The threshold of another year. And while "here we are again" sounds weary, it's anything but for me. I've got a charming reminder that new years aren't promised, so each one is, if not an achievement, at least a gift.
I haven't blogged much this year, and that's a good thing; it means there hasn't been much to report. My vision remains much the same, and the tumor has even continued to shrink a bit. I still get regular injections in my eye, which still make me feel a little badass, but less so since my company in the waiting room is usually a bunch of eighty year olds in floral prints and track suits. I'm sure they're totally badass on the INside, though.
Recently, some mild and diffuse symptoms in my left eye (the good one) made me paranoid that I was going to lose my ability to write and read and drive, which made me a tiny bit hysterical. Dr. M., bless his heart, arranged for me to be seen yesterday to make sure everything was okay, which it was. So I also get the gift of starting the new year with an extra assurance of good eye health.
As one does, I've been thinking of resolutions. In recent years, I've been keeping the resolutions simple, often just one word. "Ask" has been a recent favorite, and it's been upgraded to an operating principle. I'm branching out a bit this year to longer, but low-pressure resolutions, like "wear more colored socks." Almost all my socks are black because it's just more work than I can bear in the morning to match my top to what's on my feet. But I'm going to really put myself out there this year, fashionwise, with blue and red and green and pink. Perhaps the occasional stripe. I'll let you know when my Vogue cover is scheduled to hit newsstands.
Other resolutions will be, perhaps, less visible on a day to day basis, but more important:
In six words: Open mind, close mouth, reserve judgment.
In five words: Wait. More will be revealed.
In four words: Sit down and write.
In three words: Walk every day.
In two words: Fear not.
In one word. Connect.
Happy New Year, y'all. And many more. Let's make it count.
I haven't blogged much this year, and that's a good thing; it means there hasn't been much to report. My vision remains much the same, and the tumor has even continued to shrink a bit. I still get regular injections in my eye, which still make me feel a little badass, but less so since my company in the waiting room is usually a bunch of eighty year olds in floral prints and track suits. I'm sure they're totally badass on the INside, though.
Recently, some mild and diffuse symptoms in my left eye (the good one) made me paranoid that I was going to lose my ability to write and read and drive, which made me a tiny bit hysterical. Dr. M., bless his heart, arranged for me to be seen yesterday to make sure everything was okay, which it was. So I also get the gift of starting the new year with an extra assurance of good eye health.
As one does, I've been thinking of resolutions. In recent years, I've been keeping the resolutions simple, often just one word. "Ask" has been a recent favorite, and it's been upgraded to an operating principle. I'm branching out a bit this year to longer, but low-pressure resolutions, like "wear more colored socks." Almost all my socks are black because it's just more work than I can bear in the morning to match my top to what's on my feet. But I'm going to really put myself out there this year, fashionwise, with blue and red and green and pink. Perhaps the occasional stripe. I'll let you know when my Vogue cover is scheduled to hit newsstands.
Other resolutions will be, perhaps, less visible on a day to day basis, but more important:
In six words: Open mind, close mouth, reserve judgment.
In five words: Wait. More will be revealed.
In four words: Sit down and write.
In three words: Walk every day.
In two words: Fear not.
In one word. Connect.
Happy New Year, y'all. And many more. Let's make it count.
Wednesday, July 23, 2014
Fellow Travelers
It's been a while since I updated, and I always feel bad when I go a long time between posts; I feel that if people are going to be kind enough to travel along on my cancer journey, the least I owe them is to call out the signposts as we pass.
The latest signpost was very encouraging. It's been twenty months since I spent five days in the hospital, with a radioactive plaque behind my eye, aiming its angry vibes at the tumor. Initially, everything was progressing just as it was supposed to. The tumor was shrinking as fast as the doctor could have hoped. Eventually, the rate of shrinkage slowed, but that was expected. Then came the scary day in the spring of this year when it looked like maybe, just maybe, the tumor had grown a minuscule amount.
I had to wait six weeks before it could be checked again. Mercifully, the news at that time was good. The tumor was back on the regression track the doctor would have expected, and he couldn't say for sure why it had looked bigger at the previous appointment. It did not actually occur to me that the tumor shrinking at the later appointment could have been the fluke, and not the apparent earlier growth.
It must have occurred to Dr. M., though. When I saw him Tuesday, there was unmistakable tumor shrinkage. He actually said, "I'm thrilled." When I said, "Were you worried?" he responded, "I'm not going to answer that." Which led to my inquiry about the likelihood of a recurrence of the cancer in my eye--something I had never asked before. He said that he couldn't say the likelihood was zero, but that it was low, perhaps five percent or less. He also said that the longer I go without a recurrence, the less likely one is. (Sadly, that is not true of metastasis--with this particular disease, mets show up any time they damn please. And then they trash the joint.)
The other good news is that the fluid buildup in my eye as a side effect of the radiation has gone down dramatically, thanks to the injections I've been getting in my eyeball. So we're going to keep doing the injections, but not as often, which is nice, because there's a reason for the expression, "It's better than a sharp stick in the eye." And I don't have to go for another checkup for six months, which is the longest I've gone. It makes me feel happy, and also a little nervous. Like roller skating without holding onto the wall.
The whole appointment, from vision test to pressure check to eyeball photos to eyeball ultrasounds to consult with Dr. M. to eyeball injections took longer than usual--about five hours. Ordinarily, I'd while away the hours in a doctor's office reading, but that's a bit of a challenge with your eyes dilated. So I wound up talking to people. Like a mom I met in the ladies' room who was refreshing her mascara. It had gotten smeared when her eyes had teared up. Not from eye drops--she wasn't the patient. Her nine year old daughter is. She has ocular melanoma and another kind of eye cancer so rare that fewer than thirty people in the country have it.
"Is Dr. M. good?" she asked me. "The best," I assured her. I asked if I could put her daughter's name on my prayer list. She agreed, and put me on hers. I wanted to hug her before we left the ladies' room, but I didn't want her to start crying again.
These are my fellow travelers, too.
The latest signpost was very encouraging. It's been twenty months since I spent five days in the hospital, with a radioactive plaque behind my eye, aiming its angry vibes at the tumor. Initially, everything was progressing just as it was supposed to. The tumor was shrinking as fast as the doctor could have hoped. Eventually, the rate of shrinkage slowed, but that was expected. Then came the scary day in the spring of this year when it looked like maybe, just maybe, the tumor had grown a minuscule amount.
I had to wait six weeks before it could be checked again. Mercifully, the news at that time was good. The tumor was back on the regression track the doctor would have expected, and he couldn't say for sure why it had looked bigger at the previous appointment. It did not actually occur to me that the tumor shrinking at the later appointment could have been the fluke, and not the apparent earlier growth.
It must have occurred to Dr. M., though. When I saw him Tuesday, there was unmistakable tumor shrinkage. He actually said, "I'm thrilled." When I said, "Were you worried?" he responded, "I'm not going to answer that." Which led to my inquiry about the likelihood of a recurrence of the cancer in my eye--something I had never asked before. He said that he couldn't say the likelihood was zero, but that it was low, perhaps five percent or less. He also said that the longer I go without a recurrence, the less likely one is. (Sadly, that is not true of metastasis--with this particular disease, mets show up any time they damn please. And then they trash the joint.)
The other good news is that the fluid buildup in my eye as a side effect of the radiation has gone down dramatically, thanks to the injections I've been getting in my eyeball. So we're going to keep doing the injections, but not as often, which is nice, because there's a reason for the expression, "It's better than a sharp stick in the eye." And I don't have to go for another checkup for six months, which is the longest I've gone. It makes me feel happy, and also a little nervous. Like roller skating without holding onto the wall.
The whole appointment, from vision test to pressure check to eyeball photos to eyeball ultrasounds to consult with Dr. M. to eyeball injections took longer than usual--about five hours. Ordinarily, I'd while away the hours in a doctor's office reading, but that's a bit of a challenge with your eyes dilated. So I wound up talking to people. Like a mom I met in the ladies' room who was refreshing her mascara. It had gotten smeared when her eyes had teared up. Not from eye drops--she wasn't the patient. Her nine year old daughter is. She has ocular melanoma and another kind of eye cancer so rare that fewer than thirty people in the country have it.
"Is Dr. M. good?" she asked me. "The best," I assured her. I asked if I could put her daughter's name on my prayer list. She agreed, and put me on hers. I wanted to hug her before we left the ladies' room, but I didn't want her to start crying again.
These are my fellow travelers, too.
Tuesday, April 29, 2014
Scanxiety
So, it's that time again.
Tomorrow, I head up to Durham for my biennial labs, CT scan and meeting with the oncologist. I have no reason to believe that anything's wrong, and the odds are that everything's all right, but still.
I'm remembering the last appointment, when the oncologist's perky new assistant said, "Preliminarily, everything looks okay, but the radiologist hasn't reviewed the scan yet, so we'll call you tomorrow if anything's wrong."
Then she called me the next day.
And talked for about thirty seconds before she got to the buried lead: no evidence of cancer. I had to have her go back and repeat what she had said before that, because I had been so paralyzed by fear, since she said she would call if anything was wrong, and here she was calling and talking about low-attenuation lesions. What the hell are low-attenuation lesions? I will tell you: they are boring cysts which mostly go away on their own (and did). But I did not know this at the time, because I am not a medical person, and lesions sound like disease to me.
So after Count Perkula finished assuring me that the cysts were no big deal, and that there was no evidence of cancer, I allowed as how she was new at her job and so she might not know this yet, but most people who have scans to see if their cancer has returned to kill them would like to know the very first thing that everything's okay. In other words, do not bury the fucking lead. I did not intimate to her that if she ever pulled that crap again I would become her life-threatening condition.. But only because I was too shaken at the time to form threats. Or, you know, coherent thoughts.
And now here we are again. I've done a really good job of containing my anxiety until now, but the workday is done and my appointment is tomorrow, and I am scared that this is my last night of being an ordinary crabby housewife, mother and writer, and that tomorrow night will be my first night of being terminally ill.
It probably won't. But it could.
One of my friends once posted a rallying cry on Facebook for her "prayer worriers," and I wondered what that was for a moment until I realized it had probably autocorrected from "prayer warriors." And then it hit me. I don't think my poor, thin little prayers qualify me as a warrior. But prayer worrier? I am all over that.
Whichever category you fit into, I'd appreciate your prayers for a good outcome tomorrow. I'll let you know how it goes.
Tomorrow, I head up to Durham for my biennial labs, CT scan and meeting with the oncologist. I have no reason to believe that anything's wrong, and the odds are that everything's all right, but still.
I'm remembering the last appointment, when the oncologist's perky new assistant said, "Preliminarily, everything looks okay, but the radiologist hasn't reviewed the scan yet, so we'll call you tomorrow if anything's wrong."
Then she called me the next day.
And talked for about thirty seconds before she got to the buried lead: no evidence of cancer. I had to have her go back and repeat what she had said before that, because I had been so paralyzed by fear, since she said she would call if anything was wrong, and here she was calling and talking about low-attenuation lesions. What the hell are low-attenuation lesions? I will tell you: they are boring cysts which mostly go away on their own (and did). But I did not know this at the time, because I am not a medical person, and lesions sound like disease to me.
So after Count Perkula finished assuring me that the cysts were no big deal, and that there was no evidence of cancer, I allowed as how she was new at her job and so she might not know this yet, but most people who have scans to see if their cancer has returned to kill them would like to know the very first thing that everything's okay. In other words, do not bury the fucking lead. I did not intimate to her that if she ever pulled that crap again I would become her life-threatening condition.. But only because I was too shaken at the time to form threats. Or, you know, coherent thoughts.
And now here we are again. I've done a really good job of containing my anxiety until now, but the workday is done and my appointment is tomorrow, and I am scared that this is my last night of being an ordinary crabby housewife, mother and writer, and that tomorrow night will be my first night of being terminally ill.
It probably won't. But it could.
One of my friends once posted a rallying cry on Facebook for her "prayer worriers," and I wondered what that was for a moment until I realized it had probably autocorrected from "prayer warriors." And then it hit me. I don't think my poor, thin little prayers qualify me as a warrior. But prayer worrier? I am all over that.
Whichever category you fit into, I'd appreciate your prayers for a good outcome tomorrow. I'll let you know how it goes.
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