Edith Gonzalez just died. She was a beloved Mexican soap opera icon. I loved her from Corazón Salvaje and knew she had been diagnosed in 2016.
I have a weird relationship with celebrities who have cancer - especially breast cancer. I look to those who have cleared their benchmarks: Christina Applegate, Rita Wilson. I keep tabs (from a distance) on those who were diagnosed at the same time I was, mainly Julia Louis-Dreyfus. Every time I catch myself thinking that it can’t possibly be true that I have a clean bill of health I look to the former. Julia Louis-Dreyfus has a way to go before I can look to her for comfort.
Last week another celebrity died unexpectedly - one of those you have grown up with, always seeing them on tv. And it hits me harder than expected. Knowing how young they were and how sudden their deaths were just drives home one of the main feelings I’ve had since my diagnosis: life is too short to not do whatever the hell you want. Do it, and do it well. Give it everything. Don’t suffer fools. Create the life you want.
Which is a great segue to the following mental health update I have: after months of my shrink recommending an anti-depressant, I finally relented. My oncologist wanted to refer me to a rheumatologist to explore the source of my debilitating fatigue. He wasn’t down with my blaming chemo + the ongoing hormone treatment.
My shrink had brought up the option before, but had also told me I did not have a straightforward diagnosis of depression, so I had rejected it. But then, after a trip to celebrate my nephew’s second birthday, I went through three of the saddest, heartbreaking, mentally twisted days where I convinced myself that the sadness I felt at leaving him was proof that the universe knew something horrible that I didn’t. And that S was going to die in a plane crash - and I was filled with anticipatory guilt. It was Doom & Gloom City. I was able to shake my self free from it on the third evening by realizing that I had been there before - I had had those feelings before and the universe hadn’t shown any of its cards. Three days is a long time.
I had a shrink appointment scheduled already so it was fresh in my mind as I told him about my thought process. My mind did not have time to pull any revisionist history. And yes, I am referring to my mind as someone separate to me because that is how it feels.
One of the driving points of therapy post-cancer is to find meaning in your life. I have struggled with this concept: what is meaningful? And how does anything meaningful cancel out how shitty life can be? (I definitely scared my brother-in-law and S one night, when I explained there were definite scenarios where I would rather not have been born - I was serious and thought I had good examples, i.e., the Holocaust.) One of the main, if not the only, meaningful experiences of the human condition is connection with those around us. And as someone who is super social and a relatively good judge of character, I have many wonderful people in my life who have been nothing but supportive during this ordeal. But, this was not as heart-warming as it could have been. Maybe as someone super social and open I took it for granted, but it just wasn’t enough.
For example, I witnessed an exchange between a homeless man and a gruff Long Island type, who did not allow him to pass through the train cars because he was clearly too weak to stand up-straight. My shrink thought that was a nice, heart-warming, meaningful moment. I thought it was nothing in the overall scheme of things. I have a bunch of these conversations with my shrink - no human interaction is enough to convince me that life is not fundamentally hard.
But now, with my nephew in particular - I was smitten. Thrilled to be bonding now that he is two and has more of an idea of who I am. Proud of that he is a healthy, brilliant, growing little boy. So incredibly proud of my sister and Bro-in-law for how they are raising him. And in the same instant I was feeling these things, I felt sadness that he lives far away, that I didn’t know he had been hitting all these milestones, and then guilt that I couldn’t be happy that he is great, and that in some twisted way I was making this about me? Why couldn’t I just be happy that he was healthy and growing? Why, when I finally found something meaningful did my mind swipe it away and replace it with fear and sadness? As humans we can feel awe and fear - and I can easily find and feel awe - and as it follows, meaning. But I cannot sit with that emotion. But fear? Hell, we have slumber parties, go to sleep away camp, go to boarding school, take long baths. The works.
My shrink recommended the medication again, and explained that he was not recommending a cast for a non-broken leg (my example) but rather a splint for a sprained ankle. He said I have a mild depression in relation to the menopause. Interesting right? Not the cancer. Not in relation to fear of a recurrence. Menopause.
I thought about this recommendation for two weeks. I spoke to friends who have been open about being on similar medications or open about contemplating them. I had one more quick episode of the twisted mental gymnastics that my mind engages in when it thinks I am not paying attention. I caught myself thinking that I was tidying up our apartment before a bike ride because if I died people would have to come over to pay their respects in a messy apartment. I was thinking this as if though it were the most normal thing in the world.
This time, 20 minutes passed before I realized it - not 3 days. Was this proof that I didn’t need medication? Maybe now that I was aware of the problem, I could get out in front of it?
And then, I saw the Brené Brown special on Netflix. I have been a fan for a long time. She spoke about how some people fear happiness. I thought that, clearly, was not me! Right? Who fears happiness? But then she went on to explain that some people feel happiness and then immediately rehearse tragedy, fearing that the other shoe must be about to drop. And I knew she was describing me. And I knew she was not contradicting anything my shrink had said - it might be human nature to want to control outcomes but engaging in this doom & gloom cycle was not healthy. Brené also mentioned that people who were resilient were good at gratitude and that set them apart from those who rehearsed tragedy.
I never would have thought I wasn’t somebody who was naturally grateful. NEVER. I have such a controlling sense of guilt that I thought I was a gratitude champ. But, my gratitude spirals very very very quickly into guilt, resentment, anger. Happy I caught my cancer early? Anger for all those who didn’t. Grateful I have great health insurance? Rage for those who don’t. Glad I have loving friends + family who rallied from near + far for me? Deep sadness for those who have to go at it alone. Of course I also mentioned this to my shrink and he pointed out that gratitude exercises are built to circumvent this by asking you to identify small joys: a great cup of coffee, a breezy bike ride, a great new album.
In the end, I thought long and hard about this decision. As open as I am about mental health (I mean, I do have this blog) I had to confront my open deep-rooted prejudice regarding depression. Shouldn’t I be smart enough to analyze my way out of this? Aren’t I mentally strong (even if I am not as resilient as I thought I was)? Aren’t I high functioning?
But then the feeling I described at the beginning of this post broke through it all: who the hell cares if I need a pill? Who am I trying to be strong for? Who am I trying to prove this to? At the end of the day, do you think my life will be marked as being someone on an anti-depressant? If I take a pill and it works, then I just improved my life. And if it doesn’t work (it might not with mild depression), I will have tried. I will continue to put the work in during therapy, and maybe one day I won’t need it anymore. I gave my shrink (and me, really) one year of being on it - I figured we could accumulate enough data in a year. But, if I need it until the day I die at 90 years young, and it made my days lighter + happier, then fuck it. Honor those who didn’t make it by taking life by the horns. We get one life and death is a total mindfuck but being hyper aware of it is mind-bendingly freeing.
TFW simple polite interaction leads to bonding over breast cancer + you end up hugging your Lyft driver goodbye. (Not the first time this happens, either.) #Findacure
Today kicks off Mental Health Awareness month in the US, with Mental Health Week in the UK to follow shortly, so with that in mind, and without further delay, let me tell you about my morning.
I had a very lucid nightmare that seemed to go on forever and was still immediately present in my mind by the time I woke up. Contrary to most dreams, I could recall most of it and was not able to get it out of my mind.
In this nightmare, I lived in a large apartment with many friends and two of my favorite cousins. It was all painted white, with gauzy white curtains, and a lot of natural sunlight. One of my cousin’s had a horrific, terminal cancer where she could still walk around the apartment but life would seep out of her little by little. Her skin was very pale against her dark hair. She is in her 20′s so the prospect of this happening to her filled me with anguish. True to my nature when I am awake, I sought to help, to fix, to remedy, to improve her condition. I could not accept that this was happening and sought to talk about it with her, her sister, and the many people who lived with us. She was completely zen about it which made me feel insane. Her sister was also completely zen about it, which made me feel completely insane. I tried listing everything she had going for her as a reason why this couldn’t be happening to her. And nothing. Those who lived with us understood, to some degree, why I was freaking out, but the two sisters remained calm even as she continued to get paler and paler.
I don’t know what woke me up - whether the nightmare or the fact that it was 7 AM. I don’t know what the nightmare means: 1) my brain reliving the trauma; 2) my brain debating whether it would be zen in the face of a recurrence; 3) a general fear of recurrence; 4) a fear of having a loved one develop terminal cancer; 5) a good, old, regular fear of death; 6) a reminder to check in with her and catch up on life for life is fleeting and tomorrow we die?
What I do know though, is that this is most probably PTSD. I know because I’ve counted on the help of a psychiatrist oncologist since a few weeks after my diagnosis. Under his guidance I can identify the different ways that PTSD manifests in me & then do something about it. I tend to talk about things as a means to process them which I find stops them from gathering deafening speed while they rattle around in my head. So I told my sister, her husband, and my husband. Then I tried to shake it off but it has popped into my head all day which then led to writing this post. (Fun fact: according to the National Center for PTSD nightmares are only 1 of the possible 17 PTSD symptoms.)
Yet, I can only talk openly because I do not feel shame around my need to address my mental health. I have a twisted privilege in this regard: no one will judge me for having PTSD post-cancer so nothing holds me back in speaking about it. Many others do not feel this freedom and keep it all in. It is time to end this ridiculous taboo. Your brain is an organ just like all the other ones you would get checked out by a doctor. So, if you need attention, seek it. Talk about it with others to normalize it. And if you think you don’t, be open to it. Mental Health Awareness begins with each one of us.
UPDATE: Turns out the image below was from the 1800s and was not properly researched and updated until 2005. The medical establishment waited until 2005 to figure out how milk ducts work? What? I will post links in the comments. This just further underscores my original comment.
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Fitting to come across this on the 1 year anniversary of having finished chemo. How had I never seen this? I had a bilateral mastectomy because I had a 1.9 cm tumor in my ducts. Invasive ductal cancer is one of the most common types of breast cancer (yes, there are different types). I did so much research before deciding on the mastectomy and never did I come across this.
The erasure of female issues is DANGEROUS. It puts us all in danger when we don’t know basic biology about ourselves because the male form is dominant. Why why why why? And @instagram is worried about people posting a picture with visible female nipples because of modesty? That is bullshit. Modesty won’t kill us. Ignorance will. #KnowYourBody #StupidCancer
Thank you @bbcnews for sharing.
I had the best dream. For the first time in ages. I daresay for the first time since the diagnosis? But I don’t want to get bogged down in that or how messed up it is that my PTSD has only generated weird anxious dreams during what should be peaceful regenerative sleep. Let me tell you how glorious it was!
I had done something great. Not sure what but it was so great that it was worthy of being celebrated. Jameela Jamil wanted to give me an award but the award she was authorized to give had a cultural angle that did not make it appropriate given that I was the recipient. I was cool with this but S’s friend Anders Holm decided he had to find a way to get me an award and the recognition I deserved.
So about twenty minutes after telling me I did not qualify for Jameela Jamil’s award, S pulled me to a side. A stage materialized to the right of us. Barack Obama approached me and gave me my medal: a luxurious navy wool knit beanie with a paisley pattern embroidered on it in white. From a far it looked like a winter paisley-print bandana.
Before I could properly thank Obama, a choir appeared on the stage and sang Supercalifragilisticexpialidocious to me, and it was JOYOUS.
One of the aspects of my mental health that frazzles me is how the realization that I had cancer last year hits me like a ton of bricks all of sudden, quickly followed by the injustice of it all.
Of course I don’t actually forget I had cancer but today, for example, I got up and went to the dentist, food shopping, and then the gym. Over the weekend I made a huge mistake: I thought I felt some of the chemo + hormone weight come off so I weighed myself. The weight says I haven’t lost anything at all. I was so frustrated over the weekend. I simultaneously want to starve myself and eat everything because it won’t make a difference.
I have been working out in some way, shape, or form for a year. Last year I asked a Pilates trainer (hi Yvette!) to come and rehab my core strength and chest. That helped a ton but I keep putting on the weight anyway because of chemo, the hormone that shut down my ovaries, and the steroids they give you during chemo to help keep nausea at bay. The weight was further compounded by the hormone treatment that started in June 2018. I lost some of it as I ran around running errands before our wedding but then it all came back with a vengeance.
You might be asking yourself just how much weight I possibly could’ve gained? Well, it’s not too much. We are talking about 9 kilos. But this is not entirely about vanity but rather identity. I don’t look like myself, I don’t feel like myself, my clothes don’t fit this body, my shoes do not fit, and my body does not respond to what it used to in terms of diet and exercise. That is a lot when you consider that I am also dealing with numbness, some nerve pain, joint pain, swelling, hair that is growing in, lack of libido, skin dryness, and that most of my hair grew in a la Cruella de Ville. When you desperately want to turn back the clock in a futile search for familiarity, it is life’s little joke that cancer keeps making things different.
So, today, when my sense of discipline has already delivered me to the gym but my brain is not having it, it is really frustrating to be reminded why my weight is not budging. And to be honest, I just started a new workout regimen in February and it is probably way to early to see results. What I was trying to do before kept on giving me shin splints so I was benched on/off. Now, I have a good rhythm going. I am just so impatient. Just now, thinking about why I feel like this, and trying to remind myself that in the greater scheme of things not that much time has passed. Heck, if steroids just recently gave me some of my face shape back, who knows what other drugs from the chemo are still lurking? Plus of course, the daily pill I take and the monthly shot of Lupron I have to get this week. Ugh. But all this, me trying to cut myself slack because it’s all so much and of course it is going to take time just takes me back to the original sin: the fact that I had this to begin with. And that sentiment of unfairness just makes me so angry that it is making me cry. If I can’t change the fact that I ever had breast cancer I at least want things to feel normal (my normal, not this “new normal” crap people tout.)
So for all those times someone said that I would find my “new normal” and that it would be great because I would appreciate all sorts of things before and that “maybe this happened for a reason”, I have to words to describe how much I despise those stock phrases. Also, maybe get around to telling me how to get back to my life when I’m so busy being upset and worried, and nothing let’s me forget the whole nightmare? You don’t know how, right? Yeah, that’s what I thought.
This post has been ages in the making. I have debated its worthiness ever since I first had someone utter a religious platitude carelessly in light of my diagnosis. Is it worth writing about? Am I preaching to the choir?
I think I am but take this as a PSA, if you will. When words are used carelessly they belie a lack of emotional awareness that compounds the trauma inflicted by a cancer diagnosis or any other wretched disease. Syntax matters. Syntax is everything.
Platitudes are incredibly offensive to someone who has an illness. Why would you use such a trite phrase in a time of incredible pain? If you do not know what to say (I get it - emotional awareness is elusive, tact is hard & deep down you are scared for me), then choose to do instead - offer to run to the grocery store, to help, to clean, to hug, to hold.
Religious platitudes are even more offensive in this context, because not only is the speaker not thinking, they are choosing to use your moment of pain to proselytize, however inadvertently. Many invoke religion because it provides them comfort but it is self-serving. Isn’t it more thoughtful to take the patient’s beliefs into consideration, instead? Religion is a delicate subject in the best of times. In an illness scenario, a chasm of belief can trigger strong emotions in an already emotionally drained patient.
When someone is sick and vulnerable - and already expending their energy on trying to feel better, keeping track of doctors and tests, insurance claims, etc - it is cruelly reckless to unleash a platitude. Their mind is going a mile a minute and they are holding it together - but you can’t think of something better to say?
Especially because these platitudes, as I have come to understand well, are not really meant to soothe the patient but rather the speaker. The speaker is scared for you, but ultimately for themselves: will I get this too? The speaker needs reassurance that there is a reason that separates them from the patient. I ended up comforting people many times over the phone - and it became the main reason I told most friends of my diagnosis via text.
This is not to say that people do not have good intentions - they do - but most people do not think before they speak or prioritize their fear above your need for comfort. To those who say “but you know what I meant!” when being called out for saying something ultimately insensitive, guess what? It is not about your intention. While we are not mind readers, we do have analytical brains and a vast vocabulary so you can choose to do better by the stricken person in your life. Please do better by them. The burden to not be insensitive is on you - not on the cancer patient. And to think it is on the cancer patient says more about you than you will ever know.
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Let me walk you through things that have been said to me + others, and what we really hear. Please feel free to insert any illness in lieu of cancer.
Do you have the BRCA gene? Does it run in your family? (Or asking a lung cancer patient if they smoked, or if a heart attack patient was overweight.)
(Of course YOU got it, you were predestined, phew!)
You will be fine. You are young and strong.
(Are you listening? I just told you I had cancer - not a scraped knee. Also, you do not know I will be fine. I want something to hold on to and this sounds hollow.)
This is God’s plan. You have to trust that this is happening for a reason. Maybe God is testing you?
(Keep your religion to yourself. Your god is testing me by giving me something that kills millions of people indiscriminately? What sort of god is this, again?)
Think about it. Maybe this is God’s way of teaching you something.
(You need to learn to think before repeating platitudes mindlessly. Maybe you should get cancer?)
If you trust in God and do your part, you will be fine.
(So if this kills me it is because I didn’t try hard enough?)
Maybe this is life’s way of telling you to slow down and smell the roses?
(Do you understand how cancer works? I don’t think you do. Also, chemo messes with your sense of smell.)
Any phrase about needing to be positive/Thankful it isn’t worse/etc.
(Gratitude during the early days of diagnosis is a mind game. Of course I am grateful it isn’t worse but I still wish it never happened. These sentiments are not mutually exclusive and I do not have to twist my emotions in order to make them fit neatly into a gratitude box. Positivity is taxing and I have hormonal induced fatigue. Also, I am terrified.)
You are exactly where you need to be.
(Yes, I have cancer so I need to be in a chemo ward surrounded by my stable of doctors. But, that isn’t what you meant, right?)
It’ll be over soon and you’ll get back to your life. It’ll be your new normal.
(If you do not know the ins-and-outs of a treatment, do not say this. Cancer treatment can go on for years, and some things never go back to normal. The side effects are many and wide ranging.
English is a cruel mistress. Normal is also defined as “(of a person) free from physical or mental disorders.” That is not the present-day, new me. That was the old me.)
I know how you feel with hormone treatment - I’m pregnant so I know what being hormonal and swollen feels like!
(I see where you were going with this but....Congrats? You get a bouncing baby and I get PTSD and menopause!)
You are so lucky your fiancé stuck it out. He didn’t have to.
(Because I am damaged goods now? Cool cool cool. What would you say to those who go through cancer utterly alone and are afraid their scars will only attract cancer fetishists? [It’s a thing.])
This happened for a reason.
(This is by and far the worst repeat offender. Please never say that having cancer was good for me. The leaps in logic in this phrase are hard to comprehend but I will try to break it down.
1. You think there is a good reason for me to get cancer.
2. You think this reason is so good that it justifies me having cancer.
3. You think this reason is so good that it would be okay if I die from cancer.
4. You think that not dying from it means there was definitely a reason for it because I am now this new changed person who will be forever positively marked by my brush with death and everything will be great! TRAUMA SCHRAUMA!
5. Having had it means my risk for a recurrence/metastasis/secondary cancer is forever above the general population but that’s okay, because there was a reason for it.
6. You think there is a good reason for so many people getting disparate level of cancer care that ultimately results in their death. (Shameless plug for universal healthcare!)
7. You simultaneously think there is a reason for me to have it but for you to be free from it. (A little priggish, are we?)
8. What was this reason again?
Do you see how insensitive this is? And how it also reeks a little of judgement? “I’m not saying you had this coming....but everything happens for a reason! <:o)”
Seriously - would you say this to someone who just lost their child to cancer? No, right? So don’t say it to me.
Be happy already! It’s over! It is in the past!
(I have menopause and all that entails; I mostly can’t feel my breasts and sometimes when I do, I feel pain; I have joint pain and swelling; I have PTSD. If/When I have a child, my brain will tell my breasts to produce milk and they will get painfully swollen before my body has a chance to tell my brain to tell those hormones to abort their mission. I will relive what this cancer has taken away from me during what might be one of my most happy moments. Nothing is in the past. I want nothing more than my healthy, innocent past. You can’t give that to me - no one can. But you can at least refrain from making the present worse.)
This is not even a full compendium. These are just the ones that highlight how syntax can make a bunch of harmless words into sharp daggers. You know when people say life gives you lemons, you make lemonade?
Have you ever paid attention to the syntax of that proverb? Life happens to you and you make something of it. It does not say “you needed to learn to make lemonade so life gave you lemons.” Curiously, in Spanish the proverb includes a key verb that points to its true universal spirit: learn. The process is about learning and therefore adjusting, two much gentler verbs than the command form of “make”. Cuando del cielo te caen limones, aprende a hacer limonada.
Trauma is getting pelted with lemons falling out of the sky. There is post traumatic stress and post traumatic growth. Post traumatic stress is freaking out about lemons when you casually see them at the super market. Post traumatic growth is learning how to navigate the supermarket and realizing that you can decide to take a deep breath and make a gimlet, lemonade. (Just kidding, my oncologist has me on a strict alcohol intake limit.)
This is easier said than done. Many people are not equipped to deal with the lemons life threw at them - they can ignore the lemons and live in denial or be forever terrified of lemons popping up in unexpected places.
PTSD does not get better in a linear manner - and for many, it never gets better. And for every moment I hesitantly would identify as “growth”, there are three more of “stress”. And, never forget that at the end of the day, they both come from trauma. Trauma is never good. Never. To speak carelessly in a way that transmits to the patient that trauma is good for them is cruel. Words matter. Please, think before you speak.
It has been an interesting first few months of 2019. From the freak out about closely scheduled doctor’s appointments to feeling like maybe I was totally fine and cured of anxiety, I am currently somewhere in the middle.
I have started to forget some things associated with treatment and fail at piecing certain things together. For example, my libido has been non-existent this month but I did not realize that it was linked to the date of the Lupron shot, S did. And we traveled with a friend and she had not seen me since August and she pointed out that my face shape has changed - most likely due to finally being rid of the steroids given to me during chemo. I had forgotten about the steroids. I am so thoroughly in this mess that I can’t always find the distance needed to identify patterns and I can’t keep track of everything. This month my fatigue and hot flashes have been more frequent and it makes my memory feel weak.
This brings me to my next point. Being so in this.
Two friends have recently gotten bad news: one was diagnosed with thyroid cancer and the other with something called MGUS - a protein in the blood that could be the precursor to a myeloma. When I started to go through treatment, I knew that if I ever got news that a close friend of family member were to be diagnosed with cancer that I would be devastated. But when these two friends told me about their conditions, about two months apart, I was fine. Concerned yes but not devastated. I was so fine that I was worried about why I was fine. Likewise, when the protein for friend #2 turned out to be nothing more than a protein, I also did not feel the relief I thought I would. When I say “feel”, I mean a visceral, physical reaction. I thought of them plenty and researched their cases online (bad habit, I know) but I was not “riddled with grief” or [insert any other analogy to the physical manifestation of a feelings, good or bad]. Of course, on a mental plane I 100% was relieved (I do not wish this on anyone).
Another friend has been dealing with her mother’s terminal cancer. She has been dealing with life decisions that can have life long ramifications - whether to change jobs and lose her visa status in the in order to be able to care for ailing mother back home. While telling me about her decision making process, she prefaced the most brutal sentence with “You know I am not a bad person, right?” and then continued with “If I move home it has to be for me, not for my mom. Because my mom, for all intents and purposes is dead.” I was aghast. I understand the logic but it is one of the most soulless things I have ever heard. I know she is going through her own version of hell. My brain knew that phrase had the weight of a thousand bricks but I couldn’t feel it. Again, to be clear, I do not mean to say that I do not care - of course I care. I have barely spoken to this person since she said this to me. I remember this phrase constantly and it is possible that she has long forgotten it. But if my brain knows this to be a horrific thought process (more so when you take into consideration that it was said about a cancer patient to another cancer patient - seriously, read the room), why wasn’t my body responding? Why was I not feeling anything?
Earlier in the day, before receiving news from friend #2, I came across an instagram account of cancer memes - I cautiously eyed the memes before deciding that it was safe to take a deep plunge and continue scrolling. I laughed so hard I decided it was safe enough to follow the page and have cancer memes pop up in my feed without a trigger warning. I shared a bunch of them on my own Instagram Stories and sent some to S, who sheepishly admitted he felt uneasy laughing with me and in some instances, did not understand why it was funny. I, instead, loved the immediate shorthand of having layered emotions reduced to a succinct meme. These memes made me happy. People started to reach out to thank me for them (non-cancer people.) These memes even gave me a new name for the impertinent people who dare opine on cancer via weird “curative” diets and religious platitudes: cancer muggles.
So, of course I can feel things - just ask me to talk about politics and you will see me get riled up- but why did my friends’ health issues not trigger any physical feelings? I asked my onco shrink today and he had this bit of information:
In London, around WWII, the country decided to build bomb shelters but were hesitant because they thought that people would hole up in them. Instead, they found that Londoners would use them as needed but that their days remained pretty normal. People went about their day. Instead, in a nearby town of Plymouth, the townspeople were freaking out. It was not until a downed German plane was brought in for all to see that they reported feeling calmer about the conflict. Same happened in NYC after 9/11: it was believed that Manhattanites would report a higher level of anxiety and PTSD but records do not indicate that it was the case. It seems that the morale of these anecdotes is that it is human to cope under extreme duress when in the thick of it (whatever it may be) but that stress can be exacerbated by feeling that one is on the periphery of things.
Another quick analogy my onco shrink provided was that since I am in the thick of it (I think “eye of the storm” also works here) - I did not feel the need to use pink ribbons or any other thing that announced my proximity to cancer, whereas my parents proudly bore the pink ribbon during my treatment. That pink ribbon was their downed German plane. (Of course cancer branded apparel or accessories are a personal choice - I have seen a lot of cancer patients cover themselves head to toe in “cancer sucks”, “I got this”, etc sort of affirmation gear.
This is really interesting to me and yet another instance that highlights how my brain processes things differently now.
I have not posted in a while because it feels that some of the mental stress has become redundant. But just now something happened that is elucidates how everything has changed.
I saw an email from Sloan Kettering in my inbox. They very kindly have preview text that states “this is not an urgent email.” So, I know from the get-go that it is about scheduling or bills.
I open it, and see that they want to confirm my next appoint with the oncologist for February 5. NBD, right? Wrong. My shoulders jump up to my ears and I think “WTF, I was just there. It hasn’t been a month.” My blood boils, I get jittery, and tears swell in my eyes. I hate my monthly injection appointment. I hate that in every one I get slightly different advice. I hate that for some reason they never really schedule it 4 weeks out. I hate that I know the amount of days between the appointment date and the date I prefer is probably negligible. I hate that it riles me up. But I feel this anger so deeply. I am actually really upset. Does it have a solution? Yes. I emailed them, asked them to kick it out. They probably will. So again, what is the big deal? I don’t know. Are these my hormones reacting? I don’t know. All I know is that time since cancer has been going by at an insane speed. The rug gets pulled out from under me every day. And not only the daily rug, so to speak. But my monthly rug, my yearly rug, my decade long rug. I feel like my time is up and has ran out - not in the sense that I am dying or dead. In the sense that I have no control, my life is speeding and I can’t slow it down. It its not my life, or my time. I try to be in the now but even the now is running away. I think about how old I will be when my unborn kids reach college. Will I be young enough to be a grandmother? I look at my great aunts and uncles, my grandmother - even my parents - they have been on this earth much longer. I think about what it must feel like to be 60. 80. 90. How will I feel when I am double my age? I can’t fathom every thing that I could compress into another 35 years. Do they also feel like everything is whizzing by? Probably not. I feel like I do not have time. I do not have time.
Posted to Facebook:
"That day, she met with a radiologist. She was not due for a scan, and she was not given one. Instead, she received the vague assurance that they were going to “keep an eye” on her. The doctor said there was “nothing suspicious,” and her regular oncologists refused to see her because they deemed it unnecessary. A few months later she was able to see her chart. Of that visit, someone had written: “Rebecca continues to be paranoid.”
[Get in to bed, apply hand lotion, wonder how awesome it is that this cream makes my cuticle look better; briefly wonder where else I should put it and think of my surgery scars.]
Holy shit. I was cut open last year. And I healed really well. Isn’t it nuts that humans regenerate? And that we never think about it? We are superheroes. Skin is cut and it grows shut. I feel a sense of awe towards my body and my skin. I remember when my shrink asked if part of my fear towards the mastectomy was because humans weren’t meant to be operated on - I hadn’t thought of it that way. Throughout the year I felt gratitude intertwined with sadness. I would talk to different body parts and thank them for their service. Body parts that had to step up even though the cancer had nothing to do with them. To my stomach, for sacrificing good skin and cells when my breasts had to bow out. To my ovaries, uterus, et al for stepping up to the plate to plow through fertility treatments when the rest of me was exhausted. But tonight, gratitude and sadness feel far away because my mind is reeling from the magic wonder that is being able to heal.
Regular GYN check up. First one since last year. It is not a far walk from our apartment - conveniently located inside the beautiful Woolworth Building. I had no reason to be worried about this appointment. I was not presenting any symptoms or expecting any tests. Notwithstanding, I was in some sort of distress. Nervous, anxious, mind going a million miles an hour. Thinking about how to avoid getting blood drawn. Anxious about having to rehash my meds, my treatment plan. Worried about my career. And then, having flashes of clarity about my career - an entire analogy regarding The Unbearable Lightness of Being became clear in my head.
I read the book in high school and remember enjoying it. Once we were done reading it, I remember the teacher summarized it as a book that explored whether heaviness or lightness was the best approach to life. I think it marked me because I do not remember reading it that way - but I had asked myself that question since. And now, post-cancer, I have wanted to explore new options for myself. I was unhappy with work before and have no desire to return to something I do not love.
I have tried analyzing what I turn to when my brain is off - when I am not thinking about “should”. During treatment I occupied myself with embroidery and hand sewing. Creating things made me feel better. It is how I chose to pass the time.
While I have always chosen the “heavier” path when it comes to my career, the truth is that it was not working. The parts of a legal career that I love are the creative parts - brainstorming with a team and writing. And while politics, law, and policy always draw me in, I always reach a saturation point. With creative endeavors, I get excited! So excited! Even when they have nothing to do with me. I feel like I light up just talking about creative possibilities. And while I have tried to find an intersection for both, it has not historically worked out.
Maybe post-cancer, this is the path I choose. Maybe I chose the path that makes me feel like I could burst open, spill over, and feel light doing it. Maybe I leave behind all the internal prejudices I have about what I should do and instead, give this - whatever this turns out to be - a go.
All of this was going through my head while I waited for the gyn to come in to the office. It just took me longer to write it out than it did for me to think it, process it, and somewhat decide that it was right. I was able to apply meditation techniques - note that I was feeling anxious, acknowledge why I was feeling anxious, and that I could stop it. I did not want to reach for my phone, but I clicked on the breathe app on the apple watch. I took deep breaths and tried to center myself. It kinda worked. I was able to reason with my brain, and gather some perspective. That did not stop my eyes from brimming with tears while I rehashed the latest news from my oncologist to my gyn, but it was an exercise in not beating myself up for feeling that way.
Met a 40+ year old who has never had a mammogram because she “would rather not know if something is wrong.” If you tend to think like this about any aspect of your health, please reconsider. #KnowYourBody
[8/20/18, 9:57:28 AM] AR: Hi Everyone - I am sorry for the silence since May. I believe friendships are not only for the bad times, and it seems I fell silent when things started to get better. Things have been a bit up and down. I am feeling better physically even though fatigue still hits, and mentally I continue to improve but this month has been hard because it is full of milestones (the day I felt the tumor, the diagnosis, the upcoming anniversary of the double mastectomy, etc). So, I wrote this and posted it on Facebook:
[8/20/18, 9:57:53 AM] AR: As I debated how to commemorate the date of the diagnosis (August 23 - Should we party or be solemn? Celebrate life? Feel the weight of the interminable sadness? Does it help to know that my gut reaction is still to cry?), I figured I should sit down and write it out but should I even write about this at all?
In the months since chemo ended (April 25, 2018) my mind has been working overtime to make cancer seem like a distant surreal nightmare. A nightmare I am done with in some ways, and that is ever present in many others. Sometimes it feels like it never really happened but the effects are everywhere. It feels oddly distant sometimes and like something with which I can't really connect. Does it help to dig up and reconnect with something my mind is trying so hard to suppress during daylight and process at night? I have PTSD nightmares due to the sheer fear surrounding the trauma. I am too afraid to declare myself healthy without caveat or to use words like “never again”. When I feel better and distant from it all, my own mind chastises me for being naïve. When others confide in me to tell me about how others are recently diagnosed or have a recurrence, I hear their confidence in the belief that I will be okay. And then the fear of taking it all for granted comes back. A vicious cycle of my mind trying to forget and then being terrified of forgetting. The horrible paradox of being genuinely glad to share lessons learned from this with others about to start their treatment but also absolutely hating that I am a part of this club. Terrified this will happen to someone close to me and that they won’t be as lucky. Feeling superficial as my body starts to bounce back from this ordeal only to realize that it is ok to be happy as I am able to recognize myself again. This is my brain. This is my brain on trauma. Yes, I have an onco-shrink and he is as important as, if not more than, my oncologist.
Wondering whether trying to analyze it is tantamount to indulgent wallowing and if maybe I just need to shake it off. Is (over)analyzing it a reflection of privilege because I have: the odds in my favor; great health insurance; no small children to worry about leaving as orphans; a great support system? I am aware of this privilege and grateful for it. I am happy that the odds are in my favor and doctors think I will grow old next to my loved ones. But I feel deeply for those who have it worse. It is not fair that I have this while others die, suffer alone, or in poverty. It is not fair that I caught this early because of luck. Because I happened to be born into a family who taught me to stand up for myself, use my voice, and know my body. Yes, I have been through hell and back with surgeries and chemo. Yes, hormone treatment will last another five years, menopausal hot flashes suck, and the joint pain is real but by and large I am done. Yes, my onco-shrink is aware that I feel guilt like a champ.
And after all is said and done, I daresay I emerged from this somehow intact and re-fortified. I like to think I have never suffered fools, but over the years some had slipped in. I cleaned house in many aspects and am ready to move forward with my core people. I am learning to be kinder to myself and see where I fit in the greater scheme of things. Life is far from wholly good but now I choose to see and appreciate the small things whereas it used to come naturally to me before (as much as this post doesn’t indicate that – but we all have our moments). And I choose to talk openly about my physical and mental experience as a learning opportunity for others. Yes this is all personal and I even forget who I might have added in passing and can now view this, and speculate and judge – but I choose to ask you to please get any medical issue checked now. Please pay attention to your body and mind. Tune in and listen. Try to tune out fear.
In the end, I still have not decided how to broach Aug 23 or any of the subsequent dates– but writing this out did remind me that I am supposed to be learning to relinquish control, let things unfold naturally, that it is still so soon, so much will still change, and that maybe this anxiety stems from trying to control the incontrollable, and pressuring my own mind to figure out something that has been overwhelming on an accelerated timeline. Either way, I hope this helps.
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[8/20/18, 10:02:20 AM] Alexis Ruginis: So thank you all for your support in the past year - I love this feel good, non-judgmental, kinda atheist "prayer" group that rallied for me through all ups and downs. The chat was here to listen, reach out, and provide perspective when I lost sight of things. Thank you, thank you, thank you. I believe in your good vibes, and I believe that it helped. Thank you for holding me up.
Posted to Facebook in response to an article written by an oncologist about having cancer.
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100% on point - keep your stock phrases to yourself; it’s not a journey or a battle; hair matters; all treatment is grueling. And above all: “the nurse who gets the cannula in at the first attempt.” I’ll never know their full names but to Shoshanna (WC/NYPresb) + Theary (MSKCC): I’ll never forget how skilled you were at tackling my sole workhorse vein.
And to my vein: thank you for being my literal lifeline during 3 surgeries under general anesthesia; 1 sedation; 2 weeks of reproductive hormone monitoring; 8 sessions of Chemotherapy; and countless other blood draws. Thanks to you, I never needed a port and I could guarantee a nurse would never need to set up an IV in my far more delicate hand veins. I’ve defended you when they thought you were too puny and scarred, and in turn you showed up for me. Gracias totales.
