The Case of Information Gatherers

It's so interesting to look back on the last two years of my life and observe from a distance. My feelings are less frantic and raw. I can put space between my feelings of sheer terror that my life was over and recognize the trauma for what it was - and how time, can give you perspective. Time does not heal necessarily, but it makes you feel like you've got some bullet proof glass and a lock on the door. 

Cancer clarified. It made a lot of noise fade away and a lot of concerns about daily inconveniences take their proper place in the long (I hope) arc of life. So while I can put petty problems aside, there are other "small" things that I can no longer tolerate. I don't have time or energy for one sided relationships now. I don't need to be polite to balance out rude behavior. My favorite quote of the week is Kendrick Lamar "I can't fake humble just because your ass is insecure". I don't need to make myself smaller to get the love I deserve! Cancer showed me who has my best interests at heart. Cancer showed me where and who my attention is deserved. Cancer showed me that my best energy and devotion is reserved for myself, my spouse and the children I brought into this world. Everyone else can hop on board and share in the love - or I match your energy. Cancer showed me that while illness is isolating and lonely, I can be so proud of my inner Alexis that always has my back. 

Illness clarified the difference between two types of questions - information gathering versus true curiosity. It's hard tell. Both will show concern. Both will seem genuine. The problem with information gatherers (synonym to grief tourists ) is that they just want to be in the know. They want to be in a position to broadcast your information. While that is helpful in times of crisis or to give the aggrieved a break from repeating the same details over and over, there has to be a limit. When your personal details are then being used as a means to connect with others or when they share that information with people you'd *never* confide in - that's not really helpful by any means. It's gossip with a cancer flare. 

There's a surface level understanding to information gatherers. They don't really ask "how are you coping"... They want the side effects. They want the nasty details. They want drug names to Google and the worst want to use your pain as a way to gather sympathy for themselves. I hope all patients with chronic illnesses find the wisdom to spot the difference between genuine concern and morbid curiosity. 

I've been happy to share details that could help another person. If you ask - I'll certainly tell you whether I still have nipples or not (I do! Thanks for asking! 😊). But there's an element of the gossip train that doesn't sit right with me and I know this is a feeling in the cancer community. Ask the patient how they are FEELING. Ask the immediate caregiver how they are FEELING. Don't get the information third hand, write a "you're so strong!!" comment on social media and then forget to actually speak to the person going through treatment. Don't use our personal details to make it look like we have a close relationship. 

 Knowing whether someone is truly interested in your well being - it's intangible and undefinable. It's a feeling. It's hard to be a person who has been deeply changed by an illness and want people to show decorum, but not every conversation needs to start with, "what's hurting you this week?!?". I don't know. It's wild how interactions can sometimes be so insanely misconstrued. With all of the cancer scam documentaries that have been on TV lately -it's an interesting deep dive into psychology and illness and attention seeking behavior. 

Permission to Be Human

Lucky for me, one of my jobs allows me the freedom to listen to hours of podcasts and books and Spotify while sewing. An episode of The Huberman Lab podcast about regulating emotions led to this author and his work in creating emotional roadmaps and tools for school systems. Basically: we are NOT taught anything meaningful about our emotional systems and often we end up as adults (me!) saying, what are all these feelings and why am I not allowed to feel them? 

Even in the best scenarios, we are not doing a great job as a society teaching our children how to honor their feelings. I am guilty of it too. Who has time to sit down with a toddler and kick it out? That tantrum over a toy in the store isn't really about the toy... but the intense, overwhelming, unmanageable feelings that a 3 year old has that he *wants* something and the adults with the power are saying no. Teenagers are given a terrible reputation when 99 percent of the time, they are displaying absolutely normal developmental traits: distancing themselves, creating a separate identity and needing lots of time to self reflect. Families suppress and deny very real personality conflicts or dysfunctional behavior with the goal of "keeping the peace" when sometimes all people need is the space to come to their own conclusions. Enmeshment, emotional immaturity and needing to be positive all of the time are messages we give to kids, because well, either we were ill equipped to deal with tough emotions or we were bullied into suppressing them. 

And it isn't a fair system. Some people are given quite a bit of space to display their emotions while others in a family (or classroom) are not. The loudest, most difficult or quickest to react often use up all of the emotional space, leaving everyone else in react mode. Kids learn really quickly if their parents have space to hear their problems at all. This is a generational problem and cycle that seems to repeat itself until someone gains the language or understanding in how to stop it. 

So while it's not an excuse, I was not given a great "vocabulary" regarding emotions, how to feel them fully and then how to integrate those into life. I used to not even be able to name my feelings and I still express everything better through writing rather than verbally. One of the exercises in the book is to expand your personal vocabulary for feelings - sometimes we only know mad, sad or glad. But there's about a million variations of mad... and they all mean very different things. Irritated vs enraged, frustrated vs invalidated, exasperation vs annoyed, and so on. Anger at yourself vs anger at another person. We are so quick to tell other people, and ourselves, to turn off that negative emotion before giving the time to properly work through them. 

This book has been timely because I feel like my body and mind are having a reckoning. There are so many facets of grief, anger, frustation and joy that I have not been either given permission to feel or I didn't recognize they were there, simmering below the surface. I developed cancer - I got really sick because the chemistry in my body wasn't/isn't working properly. While I think the environment and genetics are a factor, so is trauma and my emotional health. 

A huge lesson in this book is about the concept of resentment and what it truly represents. Resentment is a different type of anger or disappointment, and kudos to anyone that either doesn't feel like they struggle with this or has conquered the emotion. Resentment is really a byproduct of helplessness. If you feel helpless to change or alter a situation - you are naturally going to resent the person, the circumstances or the outcome that you inevitably have to "accept". If someone in your life is rude, but you get to walk away or have the freedom to express yourself, you're not going to resent them. You have personal autonomy to do something about it. It's an entirely different situation is someone is rude or disrespectful and others tell you that you just have to accept it. One of my biggest frustrations in life is that some people just get by with lower expectations. The bar can be set SO low for others that it inevitably is left up to the "bigger person" to fix any and all problems. This dynamic makes sense in an adult/child relationship, because YES - adults should absolutely be held to a higher standard. But at what age do we expect equal emotional competency? (I think we all know the answer to that is never, for some.) 

 For kids with abusive parents, or when dealing with a chronic illness, or living under laws passed by a terrible politician or when part of a repressed family system... there's such a bad mix of resentment, helplessness and other people enabling bad behavior. 

The author talked extensively about his own home life and being bullied in school. And how important it was to his development to have an adult SEE that he was struggling. All it took was for one family member to acknowledge his pain to help him work through it. So the aim is to teach both kids and school administrators (and parents) how to better understand and communicate our feelings. We can't pretend that we aren't facing huge roadblocks with both outdated generational ideas about feelings, such as "What are you crying about, I'll give you something to cry about" or "Boys don't cry" blah blah blah and a new crop of kids that feel disconnected from each other due to social media. 

So, I give myself and you the permission to feel. But I encourage maybe screaming into the woods instead of sceaming at each other. 

Read Me After Chemo & Love is A Cheese Grater

"It must be unimaginable dealing with cancer, but we all have things going on in our lives."

Yep! That might be the winning comment from 2024 that sums up what it feels like to be post-chemo, post-radiation and post- amputation. Certain people, I guess, are tired of me having a chronic, terminal illness. 

Said in my most sarcastic tone: OH REALLY? Other people have lives!?! I live with five young humans that definitely show me that other people have things going on. I hold a lot of space for other people's feelings and events and concerns, and honestly, that is a huge part of my identity and my connection. I love hearing about what is going on with my dearest friends and family ... But here's the thing. I will hold infinite amount of space for you if you can do the same for me. I don't even ask for an infinite amount, how about you just listen when I am clear and concise in the things that I need and what hurts me. 

Another issue I had this year was beginning to learn to protect myself from negative energy. I am sometimes barely holding on to my own positive perspective of the future. I am looking at my mortality closely. I am living in a body that has betrayed me and I can only hope it continues to work for years to come. And I have had a few people continue to say things like "Getting old is a b$tch" after me asking them to not say it. Getting old is a gift, from my perspective. 

Anyone that actually talked to me during a year of treatment (some could only muster a text or two), knows that I could and can talk about most anything. You're having work issues? Talk to me about it! Feeling stressed? Yes, I'm sure you are. Problems with being a parent and balancing it all? I know! I'm not going to respond with "at least you don't have cancer" because I'm not 12 and I wouldn't wish this on anyone. 

But if you clap back from my legitimate feelings with "you shouldn't feel that way" or "you need too much attention" - you are not worth my empathy or energy. If I tell you I am deeply fearful of dying young, don't tell me that it's not true. If I tell you it's hurtful to joke about a character in a movie dying in hospice... You don't get to tell me I'm overreacting by being offended. I'm the one sitting in waiting rooms at the breast clinic, hearing women debate hospice with their caregivers. I'll tell you once, but I'm not wasting any more energy than that. The only people that I'm responsible for are my children: it's not my weight to carry for other adults that lack communication skills or functional empathy. 

That's what so many cancer survivors need to read after chemo: how to DO and manage the after, when so many people are unwilling to listen to what your new reality looks like. It's not funny and it's more stressful than facing a chemo infusion. The side effects are not as visible as a bald head or scars left from cutting out all of your breast tissue. The sore, tingling muscles and fingertips. The major anxiety associated with every "normal" ache. 

Our brains are wired to focus on the negative, unfortunately. We do this to keep a watchful eye on situations and people that are unsafe. So a few mean apples have gotten more attention than they should. I should be focusing on the good, generous, kind people in my world. The reminders are everywhere, if I just look. Love has been expressed to me in so many unique ways. 

Love is a cheese grater. Sent to me because I said I shouldn't be eating pre-shredded cheese from the grocery store. Love is my Muppet mug that I carry to work every morning - sometimes with the herbal tea my friend picked out for me. Love is the "Sweary Motivational Quotes" coloring book that reminds me that You can F#CKING do this. 

Love is the basket of blankets made and mailed to our house. Love is my Mr Rogers talking toy. Love is the homemade jam from Chicago or the ice mask and pens sent from Australia. Love is breast cancer awareness socks and pajamas made to hold the God-awful drains after surgery. Love is a bundle of "get better soon" cards from my students, covered in stickers.

Love is gift cards for easy dinners. Love is a Golden ticket hidden in a chocolate bar. Love is a big Kool-Aid man t-shirt. Love is puzzles and late night texts and a friend who will walk with you in the woods. Love is taking time off of work to hang out on the couch. Love is hosting a "hat party". Love is healing stones and driving to cancer rejuvenation events together. Love is Googling "how can I help". Love is showing my immediate family that you think about them too. 

This post see-sawed between the awful and the beautiful. And isn't that what we are all experiencing? Everything. Everywhere. All at once. Because I have no choice but to move forward, whether my body complies or not. Whether I'm ready or not. 

Access Road Closed

Next to my bed, I have a Daily Zen journal. In the bathroom, I have a book about joy - with interviews of the Dalai Lama and Desmond Tutu. I try to meditate every day and find the Buddhist idea of unattachment interesting. I do not know how exactly to put most of these ideas into practice. 

Having attachments to a certain outcome or idea has only ever gotten me into trouble or into a place of disappointment. I'm learning the difference between *hoping* for something while accepting that reality may be different. 

For the bulk of the last year, this blog has been dedicated to sharing my medical information and updates. I appreciated the outpouring of love from friends and family - part of my goal was to keep everyone updated and part was that I needed to process my own feelings. I also hoped that I could share information that would help the next person who got sick. I thought knowledge and transparency about cancer would be useful. 

My life since active treatment hasn't really gone as expected. There have been some instances of sharing what I needed emotionally that have gone quite badly. I think this speaks to the depth of what some people are willing to offer. It's relatively easier to send a wig or meal to someone during chemotherapy (and I don't mean to discount that generosity) than it is to meet someone in an uncomfortable emotional place. I have to let go of these damn expectations or attachment to the idea that others can be with me where I am right now. 

I know this isn't an airport and I don't need to announce my departure - but my instinct is telling me that now my writing and my processing needs to be more personal. I don't owe anyone more access to my vulnerable thoughts or feelings. I'm happy to share one on one - but I need to close the protective shield a little tighter. 

When coming out of the role of patient and back into role of human being just trying to live a life, I've realized how much privacy I lost. I couldn't control who saw me bald. I couldn't control what I ate or what medicine I had to take. (I still can't control that.) I needed to ask for support for over a year for my family's sake and I haven't had the greatest experiences with people giving help without immense expectations in return. 

Some of that vulnerability deepened friendships and I was pleasantly surprised by what it did to relationships that I had no expectations of. (That's the full circle - without expectation, things could flourish!) It's the people that had expectations from me, while at the same time, not living up to those same ideals... That I just can't do it anymore. I do not like people demanding access to my inner world or closeness from me. Key word is demanding. 

I know "boundaries" is a buzz word that makes some people roll their eyes at the concept. I didn't really understand what they meant, and am still learning how to express them. Boundaries are more about me than about what other people do. I've found that boundaries can be easily accepted or rage inducing... All depends on who you ask. 

I didn't think it would feel this way, but after having all of my business shared and me being a willing part of sharing it... I need to close up the cancer talk shop. If you want to ask me how it's going, I'm happy to talk one on one. If I can support you, I'm happy to share what I know. But after being criticized for needing too much attention or not getting over it fast enough... I will preserve my privacy (and boundaries) better than I did before. 

Signing off, in the spirit of healing and accepting things as they are. 

Saying Goodbye.. why is it sad?

I never disliked back to school time - yes, summer is over but it wouldn't be a special time if it lasted forever. From the end of June to August, we are blissfully activity free and we usually eat dinner at 8 pm or after the sun has set and kids have spent plenty of time outside.

But...

 I really love buying school supplies and I used to organize a pretend classroom for my stuffed animals when I was little. I like school, I like that my kids go to school and this year I'm returning to teaching. I like structure and being alone in my house every once in awhile. 

We haven't sent the youngest kids back to school yet (one week to go) - but the entire family packed up our oldest and delivered them to college. We cried our way through June and graduation season, cried our way through a graduation party and knew this pesky move in date was coming... But it still snuck up on us. 

On Wednesday, we drove to Buffalo State and unpacked all the things - including an 18 year old person. It's so strange to feel 17 inside and now be the embarrassing parent who wants to wear a bright orange Buff State Mom shirt all of the time. I'm remembering what it was like to move into a new place, sharing quite a small space with strangers but also making some of the best friends you'll ever have! I have confidence that my kids will be more successful in academics than I was at the start of college... But that's another story why I was a hot mess at that age. 

And in true Muppet fashion, I always think of the song "Saying Goodbye" from The Muppets Take Manhattan when I'm going through something sad that I also know is temporary. Moving is hard, the unknown is hard, stress is hard, working towards a goal is hard. 

So while our whole family of seven was hugging and drying our eyes... A group of college students walked in a said, "Awww, how far away do you all live?" Ummm, 20 minutes. It's 20 minutes away and we are literally coming back tomorrow because of a scheduled dental visit. 😜 

The kid looked at us like we were bonkers... And I'm ok with that! Cheers to college and back to school, whether you want to go or not. Cheers to all of the other families that cry openly about any type of change. And cheers to the Muppets for giving me a soundtrack to last me all of my days.