Monday, September 28, 2015
Day 1,842: SuperMoon Eclipse
Do you remember when we watched the SuperMoon Eclipse? It was 18 years ago, and you were so small. You were six and nine. The notion of an eclipse had been changed since my youth by social media, by cellphone cameras, by pollution. We were so aware of its coming, and how long it would be until it came again. The day dawned warm and gray and cloudy. Your father cursed the saints, believing that this time, like all the other times, his fascination with space would be temporarily obfuscated by overcast skies. We didn't prepare. We had no cameras, no spot scouted out in advance. We assumed we wouldn't be able to see it. We decided to let you stay up late, at least past 9, just in case. And then the thing that never happens happened. The clouds broke, the moon was perfectly cushioned between the shadows of tree branches in our yard. You were wearing your pajamas; footie pjs and pants and nightgown and bathrobe all together. We set chairs out in the yard, on the hill, by the hostas, in the midst of a plague of mosquitoes. Our neighbors, the youngest of whom was practically grown, were watching too. You wanted to join them and I said no. We watched as a family. It only took an hour. The moon was so bright, then it got slimmer and slimmer, until it was nothing but a line of white surrounded by orange, and then was nothing but a ball of red, and we saw the whole thing happen, perfectly, as if our house was made for moonwatching. You were tired and bug bitten. You asked how craters are formed on the moon. You asked about asteroids and if there was water in space and what would happen if the moon exploded or disappeared. Your father told you people used to think an eclipse was a monster rather than a shadow, that people believed that real and terrible things lived in the sky. You said that you loved our house because you could always see the moon. You asked all sorts of questions, and we answered you, except that last question, when you asked if we would be alive when this happened again, in 18 years, when you would be 24 and 27 and we would be newly 58. We told you we hoped so, but you never know, so we should enjoy this. We told you that if we were all alive at that time, you would remember this night. I said it was hard to imagine, but then I did it anyway. I imagined, and I wrote it down for you, what I hoped I would be able to say to you during the next SuperMoon Eclipse.
Thursday, September 17, 2015
Day 1,831: Nerves
I've been nervous. Anxious, I guess you could say. I've had trouble sleeping. A lot is going on in our family. New jobs, schools, multiple houses to take care of, the regular crazy full time work and full time mom balance that for me has been exacerbated by the full time cancer situation for the last five years.
Cancer actually could be a full time job when you're in active treatment. For me, it wasn't, in that I didn't take time off, hardly at all. I did take a leave during radiation at the end of 2010, mostly because our HR policies were not equipped to deal with my double daily commute. It's a long story, but yeah, I only took time off during the EASIEST time of my treatment. I had two major surgeries in 2010, and took off a total of three days, I believe. I couldn't move my left arm and I sat there typing an article with one hand. I started a new job right after my second diagnosis. I can no longer relate to the normal conversations related to work-life balance, because my situation became a little absurd at some point. Doing all that runaround...and chemo. Having chemo-induced menopause, hot flashes every five minutes, and an infant...at the same time. Making family planning decisions based on cancer and the odds of me staying alive. Stopping nursing because of cancer. My son not sleeping for months and acting like he was possessed by the devil because he thought I would die.
But that doesn't really get to what makes cancer difficult.
The scheduling is rough, the treatment is punishing, the surgery requires a long recovery, and there are side effects that last years. You lose friends and become isolated, no matter how hard you try to be "normal." You lose body parts; you face amputations and physical therapy. Your hormones go insane, and no, it's not just a life change, it's POISON doing that. You experience role reversals in your family. You grieve just looking at your children. People fear you or treat you differently.
Still, that's not what's tough. I am tough, I know that. I can handle pain and suffering. I'm good at it, whether I like it or not. What's hard is the fear, the worry, the anxiety. It's hard even for someone like me, who absorbs it in relative stride. I don't panic, or cry, I haven't dealt with major depression (though I have dealt with depression) or addiction. Many cancer patients have these problems, and you will never see me blaming them. The culture that surrounds how people are "supposed" to feel about cancer is so far off the mark it's absurd. Cancer is horrible and terrifying. It's also very common, and it will impact just about every single person directly or indirectly in their lives. So why create a false narrative? I don't understand why we have tried to dupe ourselves into believing it's a party or a chance for a new outlook on life or a journey or a chance to prove our moxie. We have a range of emotions for a reason. If our so-called negative emotions, such as fear, sadness, anger, and even helplessness cannot be tapped with something like cancer, why do we have them? I actually think they serve to protect us and remind us that there is a difference between the good and bad things that happen in life. They lead us to emotions that CAN help us greatly as we struggle. Anger, for example, can be extremely useful when dealing with a chronic medical condition. I get pissed off easily, but I also cannot be talked into anything. I am cynical, so I'm not wired to trust what doctors tell me right off the bat. I will yell to be heard. I have benefited greatly from that, in tangible, physical ways.
Regardless, cancer is nerve-wracking. Every headache, every pain that doesn't go away in a few days, every menstrual cycle that's off, could be a sign that you are dying if you have had cancer. I don't think of it that way in my every day life, because I have to get through my every day life. And please don't tell me it's negative thinking. It's not--it's the truth. Most of the time, the aches and pains of life are just that. But for a third of women originally diagnosed with early stage breast cancer, they represent more than that--they represent mets. The only thing that separates those women from me is time, or luck, or, possibly--nothing. I don't get to be normal. It's not my choice. I wish it were. I don't get to be a 40 year old woman with normal 40 year old woman problems. I understand that you might have "mom brain" or "40 brain" and so might I, but the truth is the poison wrecked my brain and I'm just getting it back. If you feel a lump, it is probably a cyst. That's how I used to think, back at 33. Since 34 I've known that for me? It's probably cancer. I know that cancer comes back, and my attitude doesn't change that. Cancer came back. It could come back again. I live with that every day, and I do it well, and with little complaining (at least about cancer), I just keep going, as almost everyone does. I don't self-medicate, but I don't judge people who do, not anymore. I think you have to do what you have to do as long as you're not endangering yourself or others. It's a hard thing to live with, when you're young, and life has turned out so different than you expected.
But here's what bothers me the most. We are often judged for being nervous. People with cancer are constantly told that, despite the completely logical reasons for our stress, we should not be stressed, anxious or nervous. Because if we are, cancer will get us! We are told that we have cancer BECAUSE we are stressed. I always argue, no, I am stressed BECAUSE I have cancer. I know women who feel they have cancer because they got divorced. Hell, then cancer is coming for half of you all before age 50. It doesn't HELP to feel stressed during cancer, or after, but the added guilt of being told that we are urging our cancer back just by trying to deal with the extreme complications of our lives is unnecessary and unhelpful.
If I say I am nervous, or not sleeping, believe me I know "it's not good for me." It's not good for you, either. It makes the day to day hard. It stresses your relationships. But it doesn't make cancer our fault. This post is not that deep. I just implore you, if you've ever felt anxious, or nervous, or stressed, or overwhelmed by life, imagine having cancer and a one in three chance of death in the next few years sentence added to that. And then, when you see someone who has or has had cancer living out her life with all of its complexity and continuing to put one foot in front of the other, pat her on the back, or offer her a coffee. Realize what it took to just seem overwhelmed like anyone else.
Cancer actually could be a full time job when you're in active treatment. For me, it wasn't, in that I didn't take time off, hardly at all. I did take a leave during radiation at the end of 2010, mostly because our HR policies were not equipped to deal with my double daily commute. It's a long story, but yeah, I only took time off during the EASIEST time of my treatment. I had two major surgeries in 2010, and took off a total of three days, I believe. I couldn't move my left arm and I sat there typing an article with one hand. I started a new job right after my second diagnosis. I can no longer relate to the normal conversations related to work-life balance, because my situation became a little absurd at some point. Doing all that runaround...and chemo. Having chemo-induced menopause, hot flashes every five minutes, and an infant...at the same time. Making family planning decisions based on cancer and the odds of me staying alive. Stopping nursing because of cancer. My son not sleeping for months and acting like he was possessed by the devil because he thought I would die.
But that doesn't really get to what makes cancer difficult.
The scheduling is rough, the treatment is punishing, the surgery requires a long recovery, and there are side effects that last years. You lose friends and become isolated, no matter how hard you try to be "normal." You lose body parts; you face amputations and physical therapy. Your hormones go insane, and no, it's not just a life change, it's POISON doing that. You experience role reversals in your family. You grieve just looking at your children. People fear you or treat you differently.
Still, that's not what's tough. I am tough, I know that. I can handle pain and suffering. I'm good at it, whether I like it or not. What's hard is the fear, the worry, the anxiety. It's hard even for someone like me, who absorbs it in relative stride. I don't panic, or cry, I haven't dealt with major depression (though I have dealt with depression) or addiction. Many cancer patients have these problems, and you will never see me blaming them. The culture that surrounds how people are "supposed" to feel about cancer is so far off the mark it's absurd. Cancer is horrible and terrifying. It's also very common, and it will impact just about every single person directly or indirectly in their lives. So why create a false narrative? I don't understand why we have tried to dupe ourselves into believing it's a party or a chance for a new outlook on life or a journey or a chance to prove our moxie. We have a range of emotions for a reason. If our so-called negative emotions, such as fear, sadness, anger, and even helplessness cannot be tapped with something like cancer, why do we have them? I actually think they serve to protect us and remind us that there is a difference between the good and bad things that happen in life. They lead us to emotions that CAN help us greatly as we struggle. Anger, for example, can be extremely useful when dealing with a chronic medical condition. I get pissed off easily, but I also cannot be talked into anything. I am cynical, so I'm not wired to trust what doctors tell me right off the bat. I will yell to be heard. I have benefited greatly from that, in tangible, physical ways.
Regardless, cancer is nerve-wracking. Every headache, every pain that doesn't go away in a few days, every menstrual cycle that's off, could be a sign that you are dying if you have had cancer. I don't think of it that way in my every day life, because I have to get through my every day life. And please don't tell me it's negative thinking. It's not--it's the truth. Most of the time, the aches and pains of life are just that. But for a third of women originally diagnosed with early stage breast cancer, they represent more than that--they represent mets. The only thing that separates those women from me is time, or luck, or, possibly--nothing. I don't get to be normal. It's not my choice. I wish it were. I don't get to be a 40 year old woman with normal 40 year old woman problems. I understand that you might have "mom brain" or "40 brain" and so might I, but the truth is the poison wrecked my brain and I'm just getting it back. If you feel a lump, it is probably a cyst. That's how I used to think, back at 33. Since 34 I've known that for me? It's probably cancer. I know that cancer comes back, and my attitude doesn't change that. Cancer came back. It could come back again. I live with that every day, and I do it well, and with little complaining (at least about cancer), I just keep going, as almost everyone does. I don't self-medicate, but I don't judge people who do, not anymore. I think you have to do what you have to do as long as you're not endangering yourself or others. It's a hard thing to live with, when you're young, and life has turned out so different than you expected.
But here's what bothers me the most. We are often judged for being nervous. People with cancer are constantly told that, despite the completely logical reasons for our stress, we should not be stressed, anxious or nervous. Because if we are, cancer will get us! We are told that we have cancer BECAUSE we are stressed. I always argue, no, I am stressed BECAUSE I have cancer. I know women who feel they have cancer because they got divorced. Hell, then cancer is coming for half of you all before age 50. It doesn't HELP to feel stressed during cancer, or after, but the added guilt of being told that we are urging our cancer back just by trying to deal with the extreme complications of our lives is unnecessary and unhelpful.
If I say I am nervous, or not sleeping, believe me I know "it's not good for me." It's not good for you, either. It makes the day to day hard. It stresses your relationships. But it doesn't make cancer our fault. This post is not that deep. I just implore you, if you've ever felt anxious, or nervous, or stressed, or overwhelmed by life, imagine having cancer and a one in three chance of death in the next few years sentence added to that. And then, when you see someone who has or has had cancer living out her life with all of its complexity and continuing to put one foot in front of the other, pat her on the back, or offer her a coffee. Realize what it took to just seem overwhelmed like anyone else.
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