Hello dear friends and readers. These are strange, unsettling times. I am sending you all so so much love and strength, hoping you are doing your best as you cozy up at home, adjust to this new normal, and just generally slow down in the weeks and months ahead.
Despite the news out of our fine city being bleak and the sounds of sirens being fairly persistent, we are doing okay over here. I am always working remotely, Greg's office has been closed for nearly two weeks, and will likely remain that way for the next month or two. With Greg about to be put on furlough, we will struggle a bit financially from this, but we are so so privileged to have a safe home, savings, a decent unemployment bill from the federal government, and family help if need be. We're spending our time cooking and making sourdough bread and watching TV and organizing and Facetiming and not getting any 'real' work done, but who cares:
Like the rest of the world, we are focusing on staying healthy and nesting.
Of course, I am more at risk than others to COVID given my compromised immune system*, but we can only keep on keeping on, as we have been doing for so many months now. I also feel tremendously relieved to be done with the worst bits of my treatment- that my mastectomy and radiation and the most intense chemo is done, that I don't have to worry about a major surgery being moved or getting to the hospital for daily visits. I cannot imagine the stress of intensive treatment being interrupted by all this, and am lucky that my current treatment is very manageable. Speaking of which, last Monday, I had my last (!) of four Carboplatin chemo infusions (aka hopefully my last chemo ever!) + my standard immunotherapy that I will continue to receive once every three weeks through October:
MSKCC has (rightfully) changed its visitor policy in light of the crisis, so it was my first infusion without loved ones, but I was lucky to have one of my fave nurses administer my infusion.** We gabbed about what TV we're watching, what we're eating, and just general life stuff. And though it was a bit of an anti-climatic end to chemo, I didn't mind. As faithful readers may remember, we already celebrated what we thought was my last chemo back in September, so I honestly relished a bit in the lack of fanfare surrounding this end. It felt like a personal, quiet, and gratifying close to an unexpected additional chapter of treatment.
Generally speaking, we're trying to stay positive and cope with the feelings of loss as best as we can. There are certainly disappointments- this coming week alone, we were supposed to spend Pesach with my parents in Virginia and then head to France to see friends and family. I am so sad that after nearly a year of not being to really travel because of cancer treatment, I can't go see my mamie, who I now haven't seen in three (!) years. But after a year of cancer treatment, I also find myself incredibly emotionally equipped to cope with the change, uncertainty, and discomfort that this current world crisis produces.
If we have spoken recently, I'm sure you have heard me preach the parallels between cancer- and covid-related anxieties. In fact, you may have even heard me call into Brian Lehrer*** to give my two cents on the matter. In the hopes of it being helpful and not too preachy, I wanted to round-up some of these thoughts into a post here. Without further ado, here's what nearly a year of cancer treatment has taught me about the current state of affairs.
Dwell in the discomfort of inactivity. As a cancer patient, I have grown quite accustomed to being fucking bored. During the worst of my chemo treatments, there were days where all I had the energy for was literally staring at the ceiling. Being an ambitious person who spent a whole lot of my pre-cancer life focusing on my work, this massive switch in productivity was extremely difficult for me. The fact that I was falling behind on my dissertation and articles and applications was, and still is, super challenging. It continues to be a slow learning process that is exacerbated by the current crisis, but I hope that we can all learn the valuable lesson that there are many ways to be productive that are not exclusively tied to economic activity. For instance, Greg and I have been baking bread from sourdough starter. It takes forever. It's fickle. But the feeling we had when we cut into a loaf and see that the wild yeast did its job was so incredibly gratifying:
Be gentle with yourself, because this is not normal. There were, and still are, so many times during my treatment that I would think to myself, 'If I were tougher, I would get up and do my work and not be such a baby about all this.' In those inevitable moments of self-critique, I always try and think what I would say to a friend if they were in my shoes. I would be like, 'You have FUCKING CANCER! CUT YOURSELF A BREAK!' In a similar vein, I think we all need to immediately and continuously cut ourselves some fucking slack. There is a reason why you can't focus right now. We are experiencing a global trauma. You are worried about your health and the health of your loved ones, about your livelihood and emotional well-being. If you are not getting shit done, you are hardly alone, and you know what, you DESERVE this period of inactivity. Because capitalism is a fucking grind, and the fact that it takes a global pandemic to slow its churning spokes is pretty bleak. So be nice to yourself- I hope you talk to yourself like you would talk to me or someone else that you love.
Give your body time for clarity. One scary thing about covid-19 is how differently it impacts different people. Here in NYC, I have a number of friends who are exhibiting symptoms at home. A combo of terrible flu-like symptoms + reading the news could understandably result in a tremendous amount of physical anxiety that could make you think/feel/fear the worst. Similarly, after a cancer diagnosis, it becomes very easy to develop a lack of trust in your body. For good reason- the basically worst-case scenario has happened, and you feel betrayed by this vessel that has carried you through the world so far. There have been many moments where I've had a headache or bone ache and worried that it is a metastasis. Similar to worries that a covid case is getting unmanageable, this is not an empty concern. But your mind is also really good at messing with you. If you're experiencing symptoms, it may sound trite, but I suggest sitting squarely in a chair, putting your hand on your heart, taking a deep breath, and telling yourself that you are okay. Then, wait 24 hours. If you're feeling well enough, ride it out. Of course, if you can't take that breath, or are truly feeling like your symptoms are unmanageable at home, call your doctor right away. Just trying to provide some strategies for coping with the occasional mind/body fuckery.
Progress is not linear. Unfortunately, we don't know how long this whole quarantine situation is going to last. From my cancer 'journey', I had to unlearn that life will unfold in a linear fashion. Some days are inevitably going to be worse than others, and the realization of what we are currently living may come in waves or spurts. Know that it's okay if you have an unexpected bad day. Something may trigger you- maybe it's a calendar reminder of somewhere that you were supposed to be, or the sight of a picture from where you were last month/year/decade, or even just watching a neighbor walk by outside your window. These aren't regressions. They are natural ebbs and flows to the uncertainty that we are collectively enduring. It'll get better, and then it might get worse again. That's okay. In the words of the great Otis Redding, just try a little tenderness.
The American healthcare system is so fucked up, but providers, especially nurses, are heros. As a cancer patient, I was intimately thrown into the bowels of the American healthcare system. I have been lucky to have 'good' insurance, and I still have thousands of dollars of medical bills from getting sick. I can't tell you how many times I've been told that an MRI or PETSCAN wasn't 'worth' the cost/benefit, as if I truly had a metastasis, early detection wouldn't extend my life at all. As I read news about the lack of testing around covid and the anxieties individuals and governments expressed around paying for this shit, I can't help but see echos of what being a disabled person in America is consistently like. If this doesn't make you believe that we need Medicare for All, I'm not sure what will. On the bright side though, like cancer has taught me, the current crisis has taught us all that healthcare providers are fucking heros. I especially want to give a shoutout to nurses, who get paid much less for what is often the most intensive work. My nurses at MSKCC not only have provided me with excellent care, but they have become my joy and support system every time I get treatment. Thank them (and advocate for paying them more) along with all essential workers.****
This too shall pass. When you're in the trenches of a crisis, the current moment can feel endless. Just know that someday you will be sitting on a park blanket with friends on Governor's Island watching an outdoor movie and you will look around with gratitude. You will get on a plane or train or bus and go embrace your mom and dad or grandma and grandpa. You will have your people gather with you around your table and feed them well while talking about the bad old days. You will travel somewhere new and wonderful and eat something delicious and think to yourself how much you wanted this, just this. You will look around a crowded theater as you collectively applause and be reminded of the joy of shared art. You will you will you will, I just know it.
I love you all. Be well, stay the fuck home, and I can't wait to hug you.
*For the record, as is Greg, as he is asplenic.
**I've said this elsewhere, but I believe this speaks to my incredible networks that in nearly a year of intensive treatment, I have never been alone. I am lucky, indeed.
***Chime in around minute 15 to hear me gab away!
****Who clearly deserve to be making more than $15 an hour.
Despite the news out of our fine city being bleak and the sounds of sirens being fairly persistent, we are doing okay over here. I am always working remotely, Greg's office has been closed for nearly two weeks, and will likely remain that way for the next month or two. With Greg about to be put on furlough, we will struggle a bit financially from this, but we are so so privileged to have a safe home, savings, a decent unemployment bill from the federal government, and family help if need be. We're spending our time cooking and making sourdough bread and watching TV and organizing and Facetiming and not getting any 'real' work done, but who cares:
The homestead.
Homemade sourdough pizza.
Chicken parmigiana!
Moules marinieres + frites.
Facetime with my NOVA girls.
Of course, I am more at risk than others to COVID given my compromised immune system*, but we can only keep on keeping on, as we have been doing for so many months now. I also feel tremendously relieved to be done with the worst bits of my treatment- that my mastectomy and radiation and the most intense chemo is done, that I don't have to worry about a major surgery being moved or getting to the hospital for daily visits. I cannot imagine the stress of intensive treatment being interrupted by all this, and am lucky that my current treatment is very manageable. Speaking of which, last Monday, I had my last (!) of four Carboplatin chemo infusions (aka hopefully my last chemo ever!) + my standard immunotherapy that I will continue to receive once every three weeks through October:
Masked up in the chemo chair!
MSKCC has (rightfully) changed its visitor policy in light of the crisis, so it was my first infusion without loved ones, but I was lucky to have one of my fave nurses administer my infusion.** We gabbed about what TV we're watching, what we're eating, and just general life stuff. And though it was a bit of an anti-climatic end to chemo, I didn't mind. As faithful readers may remember, we already celebrated what we thought was my last chemo back in September, so I honestly relished a bit in the lack of fanfare surrounding this end. It felt like a personal, quiet, and gratifying close to an unexpected additional chapter of treatment.
Generally speaking, we're trying to stay positive and cope with the feelings of loss as best as we can. There are certainly disappointments- this coming week alone, we were supposed to spend Pesach with my parents in Virginia and then head to France to see friends and family. I am so sad that after nearly a year of not being to really travel because of cancer treatment, I can't go see my mamie, who I now haven't seen in three (!) years. But after a year of cancer treatment, I also find myself incredibly emotionally equipped to cope with the change, uncertainty, and discomfort that this current world crisis produces.
If we have spoken recently, I'm sure you have heard me preach the parallels between cancer- and covid-related anxieties. In fact, you may have even heard me call into Brian Lehrer*** to give my two cents on the matter. In the hopes of it being helpful and not too preachy, I wanted to round-up some of these thoughts into a post here. Without further ado, here's what nearly a year of cancer treatment has taught me about the current state of affairs.
Dwell in the discomfort of inactivity. As a cancer patient, I have grown quite accustomed to being fucking bored. During the worst of my chemo treatments, there were days where all I had the energy for was literally staring at the ceiling. Being an ambitious person who spent a whole lot of my pre-cancer life focusing on my work, this massive switch in productivity was extremely difficult for me. The fact that I was falling behind on my dissertation and articles and applications was, and still is, super challenging. It continues to be a slow learning process that is exacerbated by the current crisis, but I hope that we can all learn the valuable lesson that there are many ways to be productive that are not exclusively tied to economic activity. For instance, Greg and I have been baking bread from sourdough starter. It takes forever. It's fickle. But the feeling we had when we cut into a loaf and see that the wild yeast did its job was so incredibly gratifying:
Sourdough boule #2.
Be gentle with yourself, because this is not normal. There were, and still are, so many times during my treatment that I would think to myself, 'If I were tougher, I would get up and do my work and not be such a baby about all this.' In those inevitable moments of self-critique, I always try and think what I would say to a friend if they were in my shoes. I would be like, 'You have FUCKING CANCER! CUT YOURSELF A BREAK!' In a similar vein, I think we all need to immediately and continuously cut ourselves some fucking slack. There is a reason why you can't focus right now. We are experiencing a global trauma. You are worried about your health and the health of your loved ones, about your livelihood and emotional well-being. If you are not getting shit done, you are hardly alone, and you know what, you DESERVE this period of inactivity. Because capitalism is a fucking grind, and the fact that it takes a global pandemic to slow its churning spokes is pretty bleak. So be nice to yourself- I hope you talk to yourself like you would talk to me or someone else that you love.
Give your body time for clarity. One scary thing about covid-19 is how differently it impacts different people. Here in NYC, I have a number of friends who are exhibiting symptoms at home. A combo of terrible flu-like symptoms + reading the news could understandably result in a tremendous amount of physical anxiety that could make you think/feel/fear the worst. Similarly, after a cancer diagnosis, it becomes very easy to develop a lack of trust in your body. For good reason- the basically worst-case scenario has happened, and you feel betrayed by this vessel that has carried you through the world so far. There have been many moments where I've had a headache or bone ache and worried that it is a metastasis. Similar to worries that a covid case is getting unmanageable, this is not an empty concern. But your mind is also really good at messing with you. If you're experiencing symptoms, it may sound trite, but I suggest sitting squarely in a chair, putting your hand on your heart, taking a deep breath, and telling yourself that you are okay. Then, wait 24 hours. If you're feeling well enough, ride it out. Of course, if you can't take that breath, or are truly feeling like your symptoms are unmanageable at home, call your doctor right away. Just trying to provide some strategies for coping with the occasional mind/body fuckery.
The American healthcare system is so fucked up, but providers, especially nurses, are heros. As a cancer patient, I was intimately thrown into the bowels of the American healthcare system. I have been lucky to have 'good' insurance, and I still have thousands of dollars of medical bills from getting sick. I can't tell you how many times I've been told that an MRI or PETSCAN wasn't 'worth' the cost/benefit, as if I truly had a metastasis, early detection wouldn't extend my life at all. As I read news about the lack of testing around covid and the anxieties individuals and governments expressed around paying for this shit, I can't help but see echos of what being a disabled person in America is consistently like. If this doesn't make you believe that we need Medicare for All, I'm not sure what will. On the bright side though, like cancer has taught me, the current crisis has taught us all that healthcare providers are fucking heros. I especially want to give a shoutout to nurses, who get paid much less for what is often the most intensive work. My nurses at MSKCC not only have provided me with excellent care, but they have become my joy and support system every time I get treatment. Thank them (and advocate for paying them more) along with all essential workers.****
This too shall pass. When you're in the trenches of a crisis, the current moment can feel endless. Just know that someday you will be sitting on a park blanket with friends on Governor's Island watching an outdoor movie and you will look around with gratitude. You will get on a plane or train or bus and go embrace your mom and dad or grandma and grandpa. You will have your people gather with you around your table and feed them well while talking about the bad old days. You will travel somewhere new and wonderful and eat something delicious and think to yourself how much you wanted this, just this. You will look around a crowded theater as you collectively applause and be reminded of the joy of shared art. You will you will you will, I just know it.
I love you all. Be well, stay the fuck home, and I can't wait to hug you.
*For the record, as is Greg, as he is asplenic.
**I've said this elsewhere, but I believe this speaks to my incredible networks that in nearly a year of intensive treatment, I have never been alone. I am lucky, indeed.
***Chime in around minute 15 to hear me gab away!
****Who clearly deserve to be making more than $15 an hour.
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