Balancing On One Foot

One Big Mirror Spell

2026-01-08T23:07:24.443-05:00

This post is for anyone who isn't deluded about what is appropriate for a masked man to do to an American citizen in the middle of the day. This post is for people who have held onto their humanity and empathy, and are hurting deeply every day because we *still" give a shit.

This post is for anyone that is struggling to balance every day tasks while also wondering if that dude who threatened to kill you on the Internet because you're a feminist isn't polishing his gun because now the top "leadership" keeps condoning murder.

This post is for people who are tired, so very tired, of liars.

There is a bit of spellwork that can help. I think a collective reminder and a collective voice that says "you aren't wrong. The offender actually left proof and you aren't crazy to talk about it". It really happened.

All I want is for people to be honest. Trauma isn't just the terrible things happening, it's the people who protect the abuser, make excuses for them, make it YOUR fault that they hurt you... That's the trauma and it's happening on a national level.

If you wish that some people could just FACE their actions and stop lying to themselves and to you about what that impact has been... Write their name down on a piece of paper. Place the side with their name on it towards the mirror and tape it in place. With your whole spirit, say that they need to face themselves and realize what they've done. Imagine how much society would improve if that happened? If the selfish realized it? If the narcissist who has been blaming everyone else for their unhappiness just... Fucking figured it out that they've built a miserable existence for themselves? If a murderous man just...said... I screwed up? In a world that seems allergic to accountability - I wish a mirror revelation on it. See what you've done, see your responsibilities and stop. Hurting. Other. People.

Reparenting Myself Through Spotify

2025-12-08T22:36:00.000-05:00

*I do realize that in November of 2025 that Spotify has become problematic with their use of ICE recruitment ads*

Fifteen year old me loved her discman. I would sit on the bus to school, not really in the mood to be human in the morning, and listen to my beloved small collection of CDs. Oh those compact discs! The love story I have with them! I was influenced by different friend groups - so I'd listen to G Love & the Special Sauce in one realm, DC Talk with my youth group friends and secretly listen all year round to my Harry Connick Jr, "When My Heart Finds Christmas" album.

I don't remember exactly when the discman broke. Might have been during college. In the beginning years of cell phone use - I didn't listen to anything other than downloaded mixtapes and my CDs in the car. And even later, my cassette player in a blasted Dodge Neon. And if you follow the evolution of music technology - I enjoyed the days of the iPod Nano (that girl went with me to the treadmill many times!), to CDs in a minivan, to downloaded music and back to record players.

I also broke/lost my iPod and for quite awhile, listened to Pandora and my family account of Spotify. As a family, we listened to Queen and Yo! Gabba Gabba songs, musicals, Bruno Mars, Lady Gaga, Michael Jackson, etc. But I hate Pandora - every time I wanted to scratch that Harry Connick Jr Christmas itch...they'd throw in some Josh Groban. Random selections were no better than the radio.

My kids have gotten older and more selective in their music tastes. So our family algorithm became a bit scattered and I made the big financial leap to pay for my own Spotify account... a whopping $9.99 a month to save my own playlists and search for that song I haven't heard since junior high.

Right before cancer struck - I started an industrial sewing job where we have the freedom to listen to music/podcasts/audiobooks all day long if we desire. And Oh do I desire!! This is when my Spotify account became the best friend I could tote with me anywhere. Phone battery in alignment, of course. I could tap into whatever genre I wanted given what I was feeling that day - and it was mine, all mine. I may sound silly - but as a parent - there aren't a lot of things that are yours. You have to share, a LOT. And not much is private.

But no one but me and Spotify know what goes on in my headphones. I can listen to a new song I found 15 times in a row and not bother a soul. I can search up all the albums I bought from BMG and recreate the thrill I had listening to them in my tween room.

Music, and my ownership over what I choose to listen to, has been a very healing element as I navigate the normal challenges of adulthood and parenthood. Sometimes the day is too loud and I just want to hear the Sleeping Beauty ballet music. Sometimes I need to put on my "You're Gonna Cry" playlist and release everything I've been heartbroken over. It's also helping me navigate the not normal parts of life. Where I'm teaching myself to better regulate emotions and reparent myself, as I try to give myself space to understand all that went on after my father died. It's such a strange season in life to be the grown up, but watching your kids live in a much more secure environment than you had. My inner 20 year old, my 17 year old, my 11 year old selves - they are begging to be heard and understood. They want to rage with Tori Amos but also rediscover listening to Janet Jackson at sleepovers.

There is something deeply comforting about finding your voice again. It's a meditation practice to sing or hum music that is so well known. In your body. It's bringing me back to the root of who I am, but also the root of who I wish I could have been without experiencing so much trauma.

Life is Short & Other Unhelpful Advice

2025-12-08T22:24:03.388-05:00

I listened to a podcast listing the 10 truths a breast cancer survivor shared about her healing - and I feel like the words could have come right out of my mouth. The lack of understanding for what survivorship means and the lack of comprehension for what this disease does to a body. Worst case scenario is death. (Well, honestly that may not be the worst.) In medium case scenarios - you now live in a body that has had vital parts of you amputated. You take medications that leave you fatigued and achy.

1. The cancer is never "done". It is a wraith that follows you, making you wonder if and when it has returned. Because you now know it's completely out of your control.

2. Your knowledge about health, diet and exercise is heightened.... But also useless. There are dudes on YouTube telling you to eat a raw diet when they had a completely different type of cancer and yours feeds on the natural hormones in your body. Being "aware* of osteoporosis when the medication you have to take *CAUSES* osteoporosis, isn't really helpful at all!

3. Think think think before you tell a cancer survivor to be strong. What does that mean exactly? Don't ask for too much help? Don't let yourself cry over your mortality? Don't admit that you think this is bullshit? When we hear "you're so strong" - I at least hear - "you're only allowed to be strong. We will not let you slip up." I was strong because I had to be. I am strong because who exactly is going to pick up the pieces if I fall apart?

4. We will never be the same. I cannot go back to an innocence about my health or my mortality. Every shitty thing that happens to us creates a little divide from other people... It's just the truth. I know what it's like to have cancer, when many are oblivious. I know what it's like to lose a parent, been there since I was 17. Empathy can only go so far - so you live with a grief and a personal knowledge that a bulk of people around you don't get. And when you are punished or considered difficult for no longer being who you were before a doctor said "you have cancer", you are further isolated.

5. Some people run towards you and some run away - and I am not in the mental space yet to NOT take that very personally. If my brush with death wasn't enough for you to consider my humanity or to let go of your petty expectations for me... How else am I supposed to interpret that? My life feels pretty damn personal.

6. Cancer clarifies. The circles of people around you shift. Logically, I know that other peoples' behavior is a reflection of who THEY are, not whether I deserve what they're giving me. Emotionally, it really bothers me. I'll give grace to a stranger being rude on public transportation. This is a big world. We are walking around in personal solar systems that will bump into others. But it's the people that want to get into your car, your personal space, claim some sort of knower-ship about you and then ride along without input, support or kindness... nah. Enduring a life-altering event seems like a good time to reassess. Who actually listens to me? Who tries? Who was waiting for me to "look better" before they resumed hating me openly? Strangers roped in to show me that they wanted me to live, while several family members roped waaaay out, showing that they couldn't be bothered.

7. Lack of control in the medical sphere can make patients double, triple, quadruple down on the areas of their life that they can control. For the last three years, I've been on a leash connected to my appointments, blood tests, pre-surgical checklists and the pharmacy. The leash gets longer, the time between appointments goes from every other week, to monthly, to 3 months apart. That's the longest leash I've been on since 2023. Three months without a needle in my arm or my abdomen. As a person who likes to plan into the future - this is a challenge. I stare at the calendar that is taped to the medical reception desk. I used to look at that when I went a whole YEAR in between check ups. When the gynecologist asked, should I make the appointment a year from now? Pre-cancer me would shrug and say, "why not?" Now I am trying to schedule the next bone infusion appointment so it doesn't ruin the weekend of an important family event in June.

8. There is no guidebook on how much to talk or not talk about being sick. The hair grows back, the scars fade. Bra prosthetics hide imbalances. A Thursday morning visit to a clinic and then Friday to the massage therapist and Saturday acupuncture. No one needs a play by play of your appointments, but how else does one comvey that cancer is still a huge part of the schedule?

9. The concept of gratitude will continue to be murky. I now have a circle of women in my life that I never would have known without being a part of survivorship programs. They are everything I would have loved in a normal book club, but a cancer book club! I would have liked getting to know them on a good day but REALLY like knowing them on bad days. So what is the name of the emotion for being grateful for friends, but not the situation that made you friends in the first place?

10. There is no healing without safety. And there is no guarantee of safety. There is only the best we can do with the knowledge that we have. When new knowledge is available, make sense of it and apply where needed. I wish there was a cap to put on the salve we need for our hearts and minds to heal. Apply once a day, discard after encountering one too many MAHA advice columns about raw milk and "Chemo is poison". Do not mix with trying to run a 10k again when your body can only do soft yin yoga. Apply to clean, unbroken skin and call a medical professional if you develop a fever. Apply with art therapy and days of renewal. Do not use if it's been tampered with. Trust your brain on the days you can see the positive and watch with caution on the days it is telling you that you are too broken. Be the safest person you've ever needed.

Dance like everyone's watching

2025-10-15T21:29:00.000-04:00

June - or Junevember as the creative, over scheduled parents like to call it... Is one thing after another. In a good way. This year we didn't have any graduations in the household (although my nephew did graduate high school!). We *only* had soccer, dance, dress rehearsals, chorus concerts, band concerts, the dance recital AND tonight - the intensive dance banquet! Other than field day and teacher gifts... We're in the clear until the 4th of July. 🫠

Can you guess that I've cried over plenty of things? 🎶 I get so emotional 🎶 - but in all fairness, universe, you have my child sing a collection of Les Miserables songs for his final chorus concert? Like ever? I felt like I was floating in space - watching my 17 year old child sing songs that I watched at 17, knowing they were one of my departed father's favorites and I'm not supposed to ugly cry in the auditorium??

And our dance recital. There was less crying for me because last year was my big "overcome cancer" moment when I got back on stage for a tap routine. This year was more of a celebration and gratitude that I have such a welcoming place to go several times a week.

I can't recommend dance or any group exercise enough when recovering from an illness or surgery. Three breast surgeries really messed up my arms, sides, chest and any sort of flexibility. Going to dance and learning a routine is the best kind of physical therapy..I don't think I'd be this far along in recovery if I wasn't having fun pretending that I'm actually good at hip hop.

My sweet Delphine is a dance pro - by the recital, her group has performed more than a dozen times on stage and from my perspective, it is a bonus to dance for our family and friends.

I did have a little post- recital melancholy because all that work AND time together is just... Poof.. over until we meet again in the fall. Thank you to my dance friends and our teachers and for everyone that purchased our fundraising goodies throughout the year. You helped create this for an 8 year old who promised me she'd never stop dancing. 🤞

Too...Much...Water

2025-06-03T22:17:00.001-04:00

Middle age is an interesting time to learn and unlearn things. Simple things like how much effort it takes to learn how to use a new phone, or in my case, a new Kindle (first day I could NOT figure out how to get out of my book and back to the home screen). Or when the supermarket gets updated and you don't know where tomato paste is!

It's a time to Embrace nerdiness or character traits that still aren't particularly useful. I'm fully invested in building miniatures - when that's the last thing I "have time" for. And I find that I use my dictionary more than ever. Does anyone else just pass over words they don't understand or you've read/seen it a million times without bothering to know what it means? I used to do that all of the time. When I finally, lazily, press the word to open the dictionary - it is worth it! I had probably read the word 'nadir' twenty times before I took the effort to learn its definition - and know I see the word everywhere.

Idioms too. If you have to Google it .. I'll wait! Because I just had to in order to include it in my writing. I was getting it confused with colloquialisms. (I'll still be here after you Google that one too!)

Bite the bullet. Costs an arm and a leg. The last straw. Under the weather.

We've heard and said these things so often that we don't think or really hear what we're saying. And once you really *hear* it, you can't unhear the meaning.

I've written in the past about some really unhelpful idioms that cancer patients hear a lot. I've had my issues with people that say "getting old is a bitch". We just regurgitate sayings without thinking of the audience or how negative or dismissive they might be.

But over the last couple of weeks, the term "carrying water" has been a recurring theme. What does that mean exactly? Can you envision for yourself the water you are carrying for other people? For our culture? For things to stay the same and to keep us busy serving something other than ourselves? I carry a lot of water for people and ideas. I also carry a purse with snacks, gum, water and activities because I'm a mother. But the entire cultural norm of carrying a purse (AND the car keys) as a woman is carrying water! Why didn't anyone else bring a bag???

Carrying water is the unappreciated mental task of keeping track of groceries, schedules and what time dance class starts. Carrying water is remembering birthdays. Carrying water is knowing the truth and watching everyone else pretend. Carrying water is staying small or keeping your opinion to yourself to let an insecure man feel good about himself. Carrying water serves the patriarchy.. Carrying water serves the status quo.

And now I can't seem to look at the words carrying water. 🫠🫠🫠

My point is that we carry so much in order to keep things going, whether anyone notices or not. Because it's "easier" to stay quiet until it isn't. I'd like to put the water down; I wish I could stop caring about what is ethical or right for one minute and just be as selfish as many people are!

I encourage you to look around and see what you're carrying for others. Be it the weight of responsibility to maintain a relationship, be it the snack schedule, be it the cleaning. It's ok to carry what you want, of course, because there is beauty in being a responsible, functional adult. But it's all about actually choosing what you carry.

My Suburban Mom Crystals and Woo Woo Healing

2025-05-29T22:20:00.001-04:00

My kids make fun of me for being a millennial on a daily basis, even though I'm not technically in that generation. If my outfit is lame? Millennial mom fashion. If I make a bad music selection? Uggh, so millennial. But the worst is when I start talking about crystals, the chakras in the body and Reiki. I bring it on myself, but that's when the teenagers start ripping on me that I'm just like every other white suburban millennial woman. Especially when I start to tease them that I'm dipping my foot into witchcraft and drinking moon water.

But I disagree! I don't think most adult women my age are *that* into crystals. Or Reiki. Or are they? Any input from my friends in this category?!?

Since my surgery last December - I have taken a big step towards completing my active treatment and reconstruction. Anything can change, but my treatment continues to be some oral medications and upcoming transfusions for bone health. I'm not "done" EVER, but I'm also not preparing for the next surgical event. That's when the mental healing really needed to begin. All of 2023 was pure crisis mode and I let a lot of boundaries slide. But survivorship and my new frantic sense of time has changed me in ways that I'm still finding surprising. I have no tolerance for unequal relationships. I have no space to manage others emotions. I have taken really big steps back to focus on taking better care of myself. I need to find my own strength and be my own support in places where I've been habitually put in third or fourth place. People that have always been in crisis mode themselves and I have spent a lot of my life reacting to harmful behavior and trying to find my own sense of peace.

My reading and podcasting this year has focused a lot on emotional health, family dynamics, reparenting myself and woo woo stuff like self healing through Reiki and chakras. I don't believe that any of it is more important than proven therapies like chemo or good nutrition - but there's a lot to be discovered or understood about the minds effects on the body.

I went for Reiki one level training in February and it was fascinating. This is after I had an amazing Reiki session at a cancer retreat (Mary's Place by the Sea) in January. The practitioner was a nurse who added Reiki to her healing. When in a session, the healer typically works from head to toe - checking in with chakra centers: crown, throat, solar plexus, etc. She went over my throat several times and asked if I'd be trying to say something important.

The answer is: YES I HAVE. To put it generally, I have tried to explain my new challenges about cancer and survivorship and ways I was trying to protect myself to a few people in my life... And not only were they not understanding, they were aggressively uncaring. The "new" me was rejected. I was frustrated that I've been given very little grace to even think about freaking out that my mortality was/is threatened and how difficult it is to live in my body now. Menopause aches and pains, PTSD, trauma, grief, fear. All of the things that may not LOOK like cancer, but certainly cause a lot of anxiety and sadness. The basic response was that I'm arrogant, selfish and since I don't look sick, I should just return to normal. Hah!! There is no fucking normal.

So I'd desperately been trying to explain myself. Which was showing up in my throat chakra. I've also learned since then that it is the gateway for problems or imbalances that are happening in lower chakras and it manifests through the throat too.

I see some of my mistakes now, that I was over communicating. I won't make that mistake again. I have really stopped trying to explain myself or my motivations - and now my answers will simply be yes or no or that doesn't work for me. I know who actually is willing to listen and those that just want access.

And let me talk about my new appreciation for crystals ! Delphine and I had an amazing trip to Arizona where my Aunt & Uncle took us to Sedona. I had no idea is it a spiritual mecca and we learned a lot about crystals and stones. That's where I picked up my Amazonite bracelet, which is meant to help clear the throat chakra. I wear it every day as a reminder to think slowly and clearly about whether I'm speaking up to appease someone else or if I'm fully justified in protecting my sacred little family.

I've also started to wear rose quartz over my heart to help it heal. To help myself remain open when I've really felt blindsided. It's very easy for me to hang on to hurt because I haven't had the greatest experiences where those that hurt or betrayed me showing any remorse or need to change. We're supposed to let people be who they are, right? I'm trying to hang on to the belief that people aren't mean spirited on purpose... Hard in the world today.

What's next? A few books about Buddhism and Jungian psychology are on my list. Maybe I'll get a Tibetan singing bowl and start rolling in the grass in my yard! Who knows!?! All I know is it can't hurt me. And if I'm already embarrassing my children with chakra candles and crystals - I might as well make a true spectacle of myself!!

What Squishmallows Mean to Me

2025-05-27T22:32:00.001-04:00

We live in a home nearly filled to the brim with stuffed animals, toys, stuffies, Barbies and Squishmallows. I can blame part of the clutter on five children.. but if I'm being honest, a LOT of these items are special to me. Many of the stuffed animals are mine! Looking at you Sesame Street beanie babies! We have a large Big Bird that has been with us since before we were married. I'm basically a large child looking for excuses to buy more stuffed animals.

The recent trend with Squishmallows might be the hardest because they are huge!! I know friends that have developed entirely new storage solutions to deal with the influx. They are soft and the perfect amount of squish.

After my most recent reconstructive surgery in December - my tissue expanders were replaced with the "final" implants (I don't want to jinx my luck because implants can fail or leak or become infected at any given time). The hardest adjustments I've had to make since August 2023, with my mastectomy, is learning new sleep patterns. Every single night, I attempt to move back into my most comfortable position. I could sleep soundly with my arms above my head and on my stomach.. that's just been impossible and uncomfortable since then. Every. Single. Night. My body tries that position and fails.

After the mastectomy, I had drains and severe stiffness. Imagine how C3PO would lay down... That's how I felt. After each fat grafting procedure, I also had pain in either my stomach or sides. I tried pillows propped between my knees and wedges and a large body pillow I could twist. The most useful items I was given were two bolster pillows from the Pink Pillow Project. Filled with microbeads, they gave me support between my sides and my arms. But they have been used and abused!

Enter the breast cancer scene: Squishmallows!!! I raided the supply in my youngest children's room and voila, my new best friend is Lil Gouda! I can hug him against my chest and still roll from side to side, being annoyed that I can't sleep the way I want... But he's just the right density to help.

So please, add Squishmallow to the list of "what to buy for the cancer patient in your life".

The Case of Information Gatherers

2025-03-30T22:35:00.000-04:00

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

2024-10-17T13:02:00.132-04:00

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

2024-10-09T22:33:00.001-04:00

"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

2024-09-10T01:29:00.003-04:00

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?

2024-08-26T22:10:00.001-04:00

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.

The Uncharted Waters of "You look okay, you Must be ok"

2024-08-19T22:41:00.003-04:00

I will try to write this post on the interest of information, and not to gather sympathy or pity. That ship has sailed, so to speak, in the pity department... After the first biopsy, when my body decided to allow cancer to develop, when I needed all of the treatment. Like any uncomfortable topic... People get that look when you talk about experiencing cancer.

The active treatment phase of cancer is wild. Some people choose to be transparent about their pathologies and treatment plan, while others try to keep it a secret. I'm sure it's a matter of trust and personality - I know people in support groups that worked during chemo, wore wigs constantly to cover the bald evidence and never told anyone what they were going through. I never felt like that was a possibility for me nor do I enjoy keeping secrets. (I'm a terrible liar). My bald head was a declaration that I was going through something.

But everything is temporary and in 2024, I have several inches of hair and expanders in my body that replace the breast tissue I had removed last summer. I look relatively normal. But I feel like the divide between normal and what's really going on in my brain is widening all of the time.

Survivorship is really hard. I've struggled since January with the pressure to do everything right, as if I have the ultimate control over whether the cancer returns. This might seem doom and gloom, but no one can convince me that everything is going to work out. I sometimes feel like I've gotten a taste of what's going to be my demise - and now I'm just hoping for as much time as possible. And with that thought always in the back of my mind - I also have to function like a sane adult.

My whole life I've been a quiet patient. I can endure a lot. I had kidney reflux problems when I was young, when doctors would attach a catheter and fill my bladder to uncomfortable levels and then watch as I emptied my bladder on an MRI. I've broken my leg, broken an elbow, smashed the bejesus out of a toe, had fainting episodes as a teenager, had a bastard of a gallbladder and so on. I gave birth in a bathtub by myself. I am calm on the outside and figure I might as well manage my pain quietly because what's the sense in causing a scene. I don't know how much of this is my natural personality or a coping mechanism due to living in some emotionally volatile situations. But regardless, sometimes I think people assume I'm good just because I'm not whining. I don't envy the type of person who freaks out over every little bump or scrape... But I do wish the quiet patients could get a little bit more empathy. Yes, the squeaky wheel gets more attention (and I don't want to be the squeaky wheel) but I sometimes resent that it's the calm, collected patient that gets dismissed.

I've come here mainly to say, and advise, check in your people that have gone through something traumatic. Going back to your life, as if it was just a brief interlude, can feel really lonely. Pain is lonely, and that's no one's fault - it just is. It's okay to ask them how they are coping. I didn't know to do this until having cancer myself - the fear of reoccurrence is real. It's like the damn Babadook. Cancer is a chronic condition. It's never something to joke or make light of.

An overwhelming majority of people in my life have treated me with genuine care and concern. There's always going to be characters, however, that acted nicely when they thought it mattered and then turn that empathy off when they think a certain timeframe has ended. I realize that those people probably didn't have empathy to begin with.

Every time I hear news of a reoccurrence for a breast cancer patient or the death of any high profile like Shannen Dougherty... I am reminded that it's a very real possibility for myself. I know in my rational mind that we are all eventually going to "lose" to this thing called mortality... But can someone tell my amygdala to cool it with the fight or flight?!?

Summer is for Reading

2024-08-13T22:52:00.002-04:00

This is mainly a test to see if Facebook will reject my link again, so here is a brief recap of some wonderful books I've been reading.

I am on page 2,075 out of 2,450 in 1Q84. I think I've renewed it in the Libby app just as many times since January! It's heavy and strange and because I'm strange: I read several books at a time.

Took a break with some YA fiction and cried my eyes out with both of them.

Tell me what you've been reading... But also don't... Because if it looks too good, I will have to add it to my list. :)

An Update - Six months into the "Rest of My Life"

2024-07-23T23:12:00.001-04:00

While I think about writing almost every day - I just haven't made the time lately. One of my last big posts was about starting my targeted cancer medications - Verzenio and Anastrozole. I was worried about side effects and it felt more daunting to think about how long I'd have to put up with them. (Two years for V and ten years for A) As well as the permanent changes.

How it started? High anxiety and possibly too much use of Google and message boards.

How it's going? I've gotten to take one Verzenio break, before and after my fat grafting procedure in April. It causes low white blood cell count and difficulty in fighting off infections - so it's recommended to stop for surgery or dental work.. It was like a mini vacation for major work done on my body... So not really a win/win situation.

V can cause a variety of issues - it works to target any circulating cancer cells in the body. The medicine kind of recognizes any fast growing cells, like your hair, mouth tissue, and anything in your digestive track. It's a lot like chemo but not chemo. I was terrified that I'd have extreme aversion to fresh fruits & vegetables, as I'd read a lot of women saying that happened to them. That didn't happen - but other foods tend to bother me and my appetite is scarce. I did need to lose some steroid weight but was starting to get concerned when my weight kept dropping, without any real gain to muscle or strength.

I was also exhausted - all of the time. Yes, there's the general "I'm a mother of five and I work and we drive to activities every night" tired, but this was "need to lay down and take a nap every day tired". I'd work for 4-5 hours at my sewing job, which is not physically tiring and need to lay down. I'd be driving to pick Delphine up from school and feel like I couldn't do it.

I had been also reading a lot about studies coming out that V is just as effective at a lower dose. The initial trials had people taking 200 mg twice a day and then the most comprehensive trial went down to 150 mg twice a day. (That's what I started with). By May, however, I couldn't do it anymore. A discussion was had, QOL (quality of life) was written in my chart and the dosage was reduced to 100 mg twice a day.

Game changer. I still have days where I need Zofran for nausea and my *stomach issues* are not completely gone... But I don't feel like I'm slowly wasting away. While I feel like science is the answer to curing cancer, there's something to be said for having the ability to function and exercise and eat an adequate amount of nutrition every day.

The other drug is an aromatase inhibitor. This goes hand in hand (or pill in hand with needle in stomach) with my ovary suppression shot. I'm in menopause, but need to stay in menopause... So we tell my poor ovaries by medical injection to not reawaken every month. I don't feel that I've had any issues with this shot: knock on wood and thank you universe! Drug A stops my body from absorbing estrogen that is produced in other parts of my body. Hormones are kind of fascinating once you've read a thousand articles about them.

Menopause is a bitch. Sometimes I'm really angry that I got a jump start on it at this age. Problems with your bones, muscle retention, skin, hair, eyesight, mental clarity, etc. Expected weight gain, joint pain and sorry TMI - possible issues with all lady parts, including your bladder. What a disservice the medical industry has done to ignore the symptoms almost every woman will encounter in her life. For a very large portion of her life, if fortunate enough to live that long.

With that disclaimer, I think I'm managing ok. I take tart cherry and collagen and I've been really trying to make weight lifting or resistance a part of my life. I have joint pain and my feet always hurt. I take vitamin D and have gone crazy with dairy consumption. I had a dexa scan of my spine and hips before starting any of these meds and won't have another one for two years, unless it's warranted. In the meantime, you just hope your efforts can stop osteoporosis.

And I can't tell if my scattered thoughts are Mom brain, normal in my 40s brain or medicine/menopause brain. I've been meditating more often to help me avoid that panicked thought process that we all face. The one where you think about everything you need to do at once and slightly freak out.

The biggest challenge of the last six months has been absorbing all of the trauma of a cancer diagnosis. This is the part where a lot of people feel lost and overwhelmed. I feel a lot of personal pressure to do absolutely everything right: get the perfect amount of sleep, exercise, avoid stress, say yes to broccoli, say no to bacon, challenge my brain, cultivate gratitude and get to the depths of my feelings about it all.

I feel like some people treated me as if it was time to turn off the cancer switch on 2024 and I was ALL BETTER now! While I don't want my identity to be cancer person... I am forever altered. I know several people whose breast cancer has returned after several years and you can't turn off that anxiety. We can only control so much. So I've been learning in the past six months how to keep up with my medications, keep up with my family and keep the rest of the nonsense out.

The Annual Library Book Sale!

2024-04-28T22:03:00.002-04:00

There are so many holidays, traditions, birthdays and events throughout the year that bridge the now and the past. You can't help but think about where you were a year ago on Christmas or your last birthday.

We have fireworks in July and countdowns at the end of the year. Marking our very inconsequential votes for at home viewing of the Academy Awards. We put candles on birthday cakes and there's all the things that come with home ownership. Take out the patio furniture, bring it in. Placing our indoor plants out in the spring sunshine, where they make up for a dormant winter.

One of my personal annual events is the library book sale. Oh, how I try to stay away. I tell myself, DUDE - you have no business bringing more books into your house. Bookshelves and book bins are overflowing and the personal pile next to my bed is ummm, out of control. And let's not talk about while I have all of these physical books at the ready - I'm still downloading and requesting e-books regularly. Like four at a time regularly.

But every year I go and buy the $5 bag that can be filled to the brim. I look at cookbooks and hard cover non-fiction and always find something that is on my Goodreads "want to read" list.

Last year I went to the book sale only a few days after shaving my head. I wore my baseball cap/wig combo and hoped I didn't look obviously wigged. It's kind of magical to think about how much and how little changes in a years time.

And my prize this year was a book that no one needed and no one will read but I laughed so hard when I saw it...

From one immature person to the next, I hope you have something like the book sale where you can make entirely irresponsible choices for only $5.

World Cancer Day

2024-02-08T13:58:00.000-05:00

Apparently World Cancer Day is "...a powerful opportunity to speak out, to call for action, to listen to cancer patients and their families, and to give them a voice."

A day where people should listen to me and care about my experiences in cancer treatment? OK! (All said with a dose of sarcasm because cancer or illness shouldn't be treated like a spectator sport.) But I'll gladly talk about my feelings and post it for all the world to see.

I'm quickly approaching a year from diagnosis. I think we all feel this crazy unraveling of time, a disbelief that a year has passed at all. How is it 2024 exactly? A year of intense information gathering and stress. A year of clarification and hurdles, some that I thought wouldn't be possible. But it was a whole year of living! I remember thinking last February... Good GOD, we just got a puppy a few months ago: Is this dog going to outlive me? Whether it was an awesome year or not, it was a year of being here with my family. I could have just as easily been in a fatal car crash last February 13th and I wouldn't be here to recount anything.

I'm proud of myself for overcoming a lot of unpleasant physical and mental trudgery. I certainly didn't do it alone... but at the end of the day (and the beginning and middle), we really only have ourselves to count on. I've got to give myself the mental pep talks and process it into a way of positive, realistic living. It's not all sunshine (in fact, Buffalo only has given us maybe three days of sunshine in the last month). I'm overwhelmed often by the pressure to be on my best health behavior now: sleep well, stress less, eat plant based organic foods and if I miss a nutrient... better get that supplement in. Exercise often and remember to be mindful and still. Oh yeah, also be a parent and a wife and a friend and a sibling and adult child and get to work on time too! I often feel like my health lies entirely in my mindset... and that's just too much pressure.

I have been reading and listening to cancer & health related blogs. I am taking my medications and managing side effects. A lot of my information gathering is less frantic and more pure curiousity. I could not have read this history of cancer synopsis a year ago, especially the parts about surgery. But I have found a lot of comfort in viewing my body, and its ailments, as separate from my self. Cancer affects a lot of people and has been a mystery for healers/doctors for a very very long time. I am just one person who is fortunate enough to be experiencing this in 2024... with a few centuries of research and experience to build on.

I highly highly recommend this book Emperor of Maladies to educate yourself and also marvel at how far we've come. A century ago, we barely understood bacteria and anethesia. Surgeons cut people to shreds trying to get tumors out of the body. No one understood leukemia or how to even try to prevent cancer from returning. And for Buffalo people - my mind was blown that Roswell Park was a dude! A real dude! I figure hospital names are a mish mash of doctors last names and donors... but Roswell Park himself made huge contributions to updating safety in medical procedures and in Buffalo history. This is where I admit I am truly becoming a history nerd.

I am finding life to be interesting *after* active treatment. I'm not really in the nadir of cancer care, but my doctor reminded me today that it's going to take at least a year for my body to fully recover. And my medications do still cause fatigue, nausea and a comprimised immune system. My skin is actively recovering (under the surface) from radiation. So of course I'm tired.

BUT. And I think this is an important distinction that means something different for everyone that has been through a medical ordeal. I still don't identify myself as a person who is "sick". That might be delusional... as I look back on the instances I had health crises. Kidney problems as a young child, acute galbladder problems, a few atypical pap smears (and procedures), gestational diabetes, breast CANCER. That's not exactly the resume of someone who is extremely healthy. But I don't think of myself that way. While I love a community, I don't want to willingly join this pink army of breast cancer survivors and create my identity around it.

After listening to Shannon Dougherty's podcast (Let's Be Clear), I kind of see the path I'd like to take going forward. I don't want anyone to necessarily forget that I had cancer... as it's a chronic condition... but I don't need it to be the focus of my existence. Most people in my life have been extremely considerate and don't throw unsolicited advice my way. Yes, if you do read about the cure and it's been peer reviewed by doctors and somehow my own doctors haven't heard of it - please feel free to mention it. But don't bring me internet theories and conspiracies that cancer centers only want my money.

Her biggest advice on the podcast was to be very, very careful of what you say to a cancer patient because it can never be unheard or unsaid. That's also some pretty solid life advice as well. Be mindful of what you are saying. Be courteous and don't lead with, "How crappy do you feel today?" :)

As for World Cancer Day, I think we're in a fantastic place where we can openly talk about cancer and it isn't a hopeless, dire subject to be whispered about. I am using it to speak my piece and also think about the many patients before me... who endured trials and how their ineffective treatment or surgery helped us move one step closer to figuring it all out. Cancer still takes a lot of lovely people away from us: often decades before it should have. I see you.

Relationships Are like Customer Service Reviews

2024-01-09T22:29:00.001-05:00

Hi. Happy New Year.

Its 2024. Not the hellscape 2023. Not all of last year was bad - I had little breaks of sanity and enjoyment and travel peppered in with moments of sheer terror, grief and physical pain. Maybe we all experienced that in a way. But it's 2024 and I want it to be a good one. One for healing and refreshing the browser and eliminating things that I don't need.

I want simplicity. Clearing the clutter in my house and the cycles in my brain. And honestly, closing bad relationship cycles as well.

So my title is a weird metaphor for relationships and customer service. Let me explain. In the world of reviews for businesses - it's hard to get anyone who has an average experience to take the time to rate their service or write an online comment. Average service is basically washed out. You got what you asked for and nothing more.

Bad service gets a lot of attention, obviously. We want everyone to know which businesses should be avoided and which ones scammed us. But, if we have a bad experience and it's FIXED - we are usually happier with that business than if nothing negative had occurred at all.

Having a problem and then overcoming it usually makes us more loyal to a business, more vocal and more likely to give high ratings.

I think this is the same with relationships.

We're all looking for connection, or at least I am. I value deep relationships that are authentic. Authentic in the way that you can discuss a lot of topics and be honest. You can share your feelings and know that it will be held in confidential space. You can voice frustrations without it turning into defensiveness or gaslighting. You can give and take feedback. You can say the ugly things out loud.

Since all of us are incredibly different - I think these relationships take time and often mistakes. Feelings get hurt. We don't understand each others' motivations or histories. We don't have the same communication styles. And some people are just not going to give you much to work with!

I'm trying to get better with expectations. I wish that others valued communication, as a way to stay connected. Or maybe they just don't feel the need to express it? I often wonder if people think they have good relationships with me, when I think they've completely dissolved. Do they have the same thoughts or do they think everything is just fantastic?

When the relationship is either long term or familiar enough that you've had conflict, there's going to be the need to give and get feedback. (This is where I hope I finally explain my metaphor). Someone says something hurtful, someone doesn't return a text (or 10). And maybe like at a business, you say something. You complain. You have the wrong order at your emotional restaurant and you want it fixed! How that person responds is so freaking important. And not just once, but maybe you weigh the averages of the last five encounters.

If/when you say the wrong thing or you miss something important - being open to feedback is the path to enlightenment. Love is shown through actions, not the words "I love you" and then nothing else that is trustworthy or kind. And maybe it can't be "fixed" to a five star review status... But we're going to be happier and more willing to come back if that person (or business) at least *attempts* to fix it. I know I feel more connected, more empathetic, more "satisfied with my experience" when I feel heard. And I hope I'm getting better at providing those services myself! Being a parent and spouse and child and sibling and friend and co-chair and extended relative and member of the Girl Scouts... I think I'm headed more towards 3.5 Star review than I was before.

Mistakes are made, dumb things are said. People act out of bad habits. I know this. But the businesses I no longer want to patron are the ones that double down on mediocre service. Sorry, we ran out of your favorite dish again and didn't change any of our inventory/behavior to try and do better!

Thanks for reading my ridiculous post about comparing take-out and unmet emotional needs.

Day One, only 1097 more to go

2023-12-14T15:18:00.002-05:00

I'm having some big feelings over a 150 mg pill. (And the 1 mg menopause maker pill called an "aromatase inhibitor".)

Today is day one for my long term medications. The things I have to do now that active treatment is over. The things that will change my body chemistry and help stop reoccurrence.

The pills that subsequently require *other* pills or supplements to handle side effects.

This is my PSA that with some cancers, treatment never ends. I know I've harped on this before. I have to fall somewhere between grateful that they exist and skeptical about whether the risks outweigh the benefits. I just ask that if anyone wants to say, "it's better than being dead!" , you should probably keep that to yourself and reconsider the logic.

For anyone curious about the science, I am taking a CDK 4/6 inhibitor called Verzenio. It's widely prescribed and was developed I believe to give to Stage 4 patients as a means to shrink tumors that can't be operated on. Or shouldn't be operated on - not all cancer surgery is a good idea, oddly enough. But more recently, Verzenio has been prescribed as a preventative measure for two years. Is this big pharma greed or does it work? Research is showing that it works... But also that big pharma is making bank. Of course I have conflicting feelings about it - knowing that the side effects WILL show up. I follow comments in medical support groups and have had several meetings with pharmacists - this is not an easily tolerated medication. Food restrictions, ongoing nausea and stomach problems, I've even read of people that had to avoid raw fruits/vegetables for the years they are taking these meds. So with the dietary advice I'm getting (and with it, the pressure that it's supposedly under my control whether cancer returns) - it's a big frustration for me.

The other medication is to prevent my body from turning available aromatase into estrogen. That beautiful, terrible estrogen that makes our joints work and our brains work and many important organs work. Estrogen that is being suppressed in my ovaries but is still produced by body fat and other organs. I'm post menopausal but am also being drop kicked into the estrogen levels of an 80 year old woman.

Hence the vitamin supplements and calcium and DEXA body scans to catch osteoporosis... I can't take Vitamin C or certain antioxidants and will continue to have a weakened immune system. That UTI that put me in the hospital during chemo? It's highly likely that I'll have more of those since estrogen, obviously, is very important for healthy bladder function.

I'm trying to find a healthy mental outlook for this. The end date for these meds is so so so far away. Verzenio is two years and the AI is ten years. When I'm done with this medication - my kids will be 27, 25, 23, 16 and 14. Finian will be FOURTEEN and the older ones will be out and launched into the world. A full decade of my life.

And yeah yeah, it's better than being dead! Counting years and wanting to be there for my kids has been a huge motivator - but it's a lot to mentally come to terms with. Somebody show me the healthy balance between wanting to stay informed and just blindly taking the pills and hoping for the best.

And Just Like That... I am Free from Radiation!

2023-12-07T21:40:00.002-05:00

I asked, and asked and asked again. "Are you sure I'm scheduled for 30 rounds?"

I was skeptical and hopeful that the doctors suggestion that I could get away with 15 rounds, which is becoming the standard of care in other countries. But my patient portal said otherwise.

We were shuffling into Roswell, me feeling a bit unmotivated at treatment #24. That's not a very exciting number... Oohh wee 24! Seven more to go! Start a parade!

But once I was changed into the gown, the techs said encouragingly, "Almost done!"

"Yeah, I can't wait for next week!"

"No, your last day is tomorrow."

"Tomorrow, as in tomorrow???"

The tech said that when she looked at my schedule, she realized that I didn't need the last five targeted treatment. If I had gotten a lumpectomy, then they would have focused on the areas where my tumors had been... But since all breast tissue has been removed - I'm good at twenty five!

I was filled with the biggest endorphin rush. Suddenly I felt like the world had opened up and I could sprint down the street. Only one more day!?!? I had SO MUCH TIME now.

Granted, radiation has been a lot easier physically than everything else. I'm burnt and can't tell if the sore throat/cough that I have are general illness or intensified by my treatment. The burns may worsen before they improve, but at least I am done!

We were well taken care of with the meal train and the plethora of lotions given to me. If I could give a shout out to my cancer related Facebook groups - I would. It's hard to imagine going through this without the advice of women that have endured it before you.

I came home and happily worked in the sewing room to finish a Christmas quilt that has been in the works for most of 2023.

Hear Me Out... Money Can Buy Happiness

2023-12-01T19:36:00.005-05:00

As an adult, I sometimes hear the platitudes that were spoken to me as a child, and I think about how reductive or trite they were.

"Life's not fair"

"Monkey see, monkey do."

"Money can't buy happiness."

That last one, I think we should reconsider.

Of course, money can't protect everyone from illness or tragedy or heartache. You can't find the love of your life via your bank account. Money can cloud our judgement and money can inspire jealousy. You can't purchase peace in your soul or empathy.

BUT: money, and the access it provides to many wonderful things and services... That can make you happier!

First of all, being poor is expensive. Think of the winter boot analogy that sometimes floats around on the Internet. If you're strapped for cash and can't afford quality boots/shoes - you buy something at maybe $30 to get you through a season. (Even that's being generous with prices since you basically can't find anything decent for less than $50). But.. if you had to buy a new pair every year because they didn't last... Let's say over a period of a decade, you're spending over $300. If you had been able to afford a high quality boot at the get go, you'd more likely spend around $150.

When we first moved here to Buffalo, we were not rolling in cash. The training period for Gregory's new job lasted 4 months and was barely compensated. I wasn't working more than two days a week because (1) three little kids, (2) we were preparing to move and (3) no one has ever offered me free child care.

That Christmas, my mother in law bought me a beautiful pair of Sorel winter boots. More than I'd been able to justify spending on such a thing. When I look at the Sorel website now - the most expensive boots I can find are around $190. I still use these boots, they don't look like they've been worn at all. They're amazingly warm and I know I'll use them for ten more years.

Do you see where I'm going with this? Having money gives one the chance to buy one nice thing in the first place, instead of shelling out $$ year after year for what you can afford right now.

There's also the hierarchy of needs. I first learned about this in my psychology 101 class in college.

We need the basics covered before we can even begin to think about "luxury" items such as self-esteem, love and philosophy. If you're always searching for the next meal or stressing about the impending bills - I don't think that leaves much time to explore your artistic pursuits.

In today's age - having credit, building credit, having wiggle room in your budget might seem like a sick joke. You don't get good interest rates on basically anything if you don't look good on paper. Your mortgage is higher, your car loan is worse. The quality of your car is probably worse because you couldn't afford the one that will last 15 years. You can't save for an emergency and end up paying more for normal services like the inevitable new tires or home repair.

Add something fun like a cancer diagnosis and I'll tell you 1000% that money can make you happier. Money can buy supplements, acupuncture, high quality food, all of the medical supplies not considered essential by insurance, time off from work, therapy, access to exercise, body products that aren't laden with hormones. Money can give you time to heal and time with your loved ones - especially if travel is involved. A job with adequate insurance (because that IS part of the compensation package) can buy your prescription that would cost $14,000 a month out of pocket. Money can give you options. Money can buy books and stupid things like doll house miniatures because they bring you stupid joy!

Money has bought my children lessons to explore dance, scouting, camping, swimming, biking, gardening, basketball, musical theatre, art and science. Money has provided us visits to the botanical gardens, planetariums, amusement parks, national parks, art galleries and the pumpkin patch. Just being able to comfortably afford celebrating holidays and birthdays is happiness.

I should also point out that we value the value of money around here. We coupon, we argue increases in our insurance rates and subscriptions. I will look at the thrift store before I buy something new. We don't say no to off-brand anything. I also love to "earn" my money, if that makes sense. I enjoy working and don't think I'd be happier if I didn't need it. But I'd also be happier if my compensation allowed me to have more money in my bank account!

I hope my children understand that we've provided their basics so that they can explore the items higher up on the hierarchy of needs. To pursue happiness, education and their artistic expression - built upon the knowledge that they have food and a safe home.

Money, when allocated fairly, can build safe neighborhoods. Money can help a woman escape an abusive relationship. Money can help that single teenage mom go to school and "better herself". Money can buy nice clothes to wear to that interview for the job that will finally pay you enough to live beyond paycheck to paycheck. Money can provide a kid with Internet access, so they have a more level playing field in this life. Money can get you a personal chef or physical therapy.

Money can also make you happy when you have enough to share it! When you think of someone like Elon Musk or Donald Trump - you can see that money is wasted on some that are miserable through and through. But isn't greed really the problem, and not the money? Isn't it the entitlement and lack of empathy?

Money can't buy kindness, really.

A story of malfunctioning radiation machines and hair growth

2023-11-28T22:04:00.002-05:00

Hi. I have to say that time is moving much faster now during radiation (and Halloween and Thanksgiving and all the school things) than it did during chemo. It felt much harder to knock out 8 sessions of chemotherapy than it does going everyday for radiation. But I'm also like a hardened cancer criminal now ... And this is an endurance race.

I completed round #20 of radiation today. There have been a few hiccups with the machine either breaking before I get there or while I'm on the table, stretched out like a bug on an entomology display. The past two days they've had to reschedule my appointments... Which again makes me wonder how anyone continues to work during treatment. God bless the good bosses out there. (I have also been blessed with the most understanding employers as I take time off, never any pressure to do more than I can.)

Several times I've been mid treatment and there's either a component of the machine that isn't working or the main computer needs to be rebooted. When someone tells you to lay completely still ... And then that time just goes on and on... First my nose itches. Then my foot. Then I have a twitch in my eye. Then a wedgie. Then a cramp in my arm. You can imagine where this is going. I'm getting a true lesson in *stillness* and focus.

As for side effects, my skin is turning variant shades of red and purple. My skin is also tightening - the best way to explain it is that my skin has lost flexibility. If I move or stretch too far, my side and chest tend to say, "Umm no. That's not gonna work." It's more irritation than pain - and if I can get through this without blistering or breaking the skin, I'm going to consider it a success.

In the coming months, I'll be hyper aware of signs of lymphedema, lung issues and pain in my esophagus. Issues with shoulder pain and permanent skin changes are always a possibility. Isn't modern medicine fun? It's my fault for asking (and researching) all of the possible problems... But it's served me well to be more informed than not.

I included a recent picture of my hair, which is actually from over two weeks ago and I have more growing! It's soft and becoming a little unruly... I haven't woken up to bedhead in over 7 months, so it's kind of exciting! This will be a whole learning process on how to move from short hair to longer hair gracefully. Tips and barber recommendations are welcome.

Where radiation and MAGA hats meet

2023-11-10T17:07:00.003-05:00

I completed day 10 of radiation... I wish the doctor had never suggested that I might be a candidate for 15-25 rounds, because now the grand total of 30 seems so very, very far away!

Everyone has been checking in - asking questions about whether I have any pain or irritation yet. The answer is: not yet!! I've been applying lotion several times a day as a preventative measure. Although I think radiation effects people in different ways, regardless of what one does to mitigate the damage. Some burn, some do not. My mother in law bought me a lotion from France that has excellent reviews... It smells nice and I consider my applications to be little moments of self care. They also can't hurt helping my scars from surgery.

And whether it helps or not, I've been drinking alkaline water and trying to stay hydrated.

Now what is radiation like? I didn't know what it entailed before lying down in the machine myself and it may also be very different in regards to what body part is being targeted.

I have four little freckle tattoos that were placed a few weeks before this started. They measure your body and make these marks easy to find, as I can imagine that would waste so much time finding those spots again and again for daily treatment. The techs always say "19.5" when I lay down on the table and adjust me to line up under a red laser cross hatch. I still don't know when the actual radiation is being released from the machine because there's noise and rotation and little metal pieces opening, closing and moving.

Imagine a frog on a dissection tray - that's how I feel on the table. I place my arms above my head (that's still a difficult movement for me, but it's improving) and turn my head away from my right side. They tape a sensor to my stomach, used to gauge how deep a breath I've taken every time they speak from the other room, "Take a breath... Hold... Breathe". If I cough or move or expand my lungs while the radiation is flowing, it will trigger an error and turn off. This is reassuring to me that they are trying their best to avoid damage to my lungs.

The whole process takes about ten minutes. I take many deep breaths and hold them... Feeling like I did when I was little, holding my breath under water at the pool; keeping track of the seconds with my father's Casio glow in the dark digital watch. I hold my breath and count, feeling that low grade burn in my lungs. The machine has three main parts, they swirl around like you are about to launch into space.

Every day I try to visualize something different and hope that these radioactive waves are finding any sneaky bastard micro metasteses that are hiding. I may or may not imagine that these cancer cells are wearing red MAGA hats and we're eliminating their awfulness one by one. I visualized that they were invited to a drag queen story hour and came to the realization that it's just one human reading to little humans and as they saw the positivity, removed their MAGA hats and threw them in the garbage. Wouldn't that be amazing? Just a little bit of progress?

Anyways, these vignettes in my brain help me during the process. My wishful energy for the world and my body to heal. What would you visualize? Laying on a kayak in the ocean? Floating in space? Picking cancer cells off with a gun at laser tag?

About that rope... it snapped.

2023-10-30T14:04:00.002-04:00

Two things: I joined an online writing group in hopes of stretching my skills and our recent prompt was "Write as if you are a rope about to break .."

Monday was my first radiation treatment and I was scheduled to follow up with my oncologist before radiation - to talk about my blood estrogen levels and whether I'd get the shot to suppress my ovaries.

We checked in at 9:45.... Waiting waiting.... 10, 10:15, 10:30, 10:35.... They've called literally every other patient back and my radiation is supposed to start at 11:15. I'm pretty sure this is how all radiation departments work - but they want you there on time, in the gown, ready to go. Plus my anxiety was THIS BIG, feeling a bit out of my element with yet another unknown.

I was getting fired up and I gave my dumb little patient stickers back to reception and said I'm not staying - I don't understand why you've let everyone else in ahead of us. I have a radiation appt!

First she argued that my appt was only at 10:30 (it's 10:40 at this point) and I reminded her that my appt calendar had us check in at 9:45. This is what time we got there after rushing to get our two littlest ones to school. Then she tried to say I still had a little time to get to radiation, as if I want to run to the other side of the hospital, nervous for my first treatment.

I think my rope just snapped. Why is it acceptable for them to just change appt times, add extra days that we need to take time off of work, and have us sitting around waiting for hours!?!? I don't know how patients do this that are primary wage earners or have small, small children or rely on others for rides. What a f$&king mess.

My "rope" has been hanging on since February. Stretched one way through chemo, stretched through the long days of blood draws (and my needle anxiety with the damn port), then the oncologist, then back upstairs to a chemo chair - knowing that the side effects would hit full force a few days later. My rope stretches with my children and the worry that I'm dropping the ball times five. My rope frayed after what I thought would be a less invasive surgery turned into a mastectomy. My rope was pulled down for another surgery a month later. My rope has gone through spring, summer, fall and into winter with one treatment plan after another.

My rope wasn't made of stainless steel - it's made of fibers that need protection from the elements. My rope hangs with the weight of my family, my obligations, my love for this life. My rope frays with these extra hiccups- every extra appointment and every extra frustration. My rope is stretched between the expectations of "enjoy every moment" and "give yourself time to recharge". I can't do both all of the time.

So as I was low-key raging at a reception desk, where I think they've become accustomed to late appointments and patients held captive by the care they need... I could feel a major strand of my rope break. I don't feel like being a nice patient all of the time, regardless of whether I am directing my anxiety in the right direction or not.

Almost a week later and I've gotten through the first 5 rounds of radiation. Happy that my side effects didn't start day one, but also feeling like the train is about to hit me.

I also did make up that appointment with my oncology team - they rescheduled it for me. I went into that office with more needle anxiety (it does not improve with time, honestly seems to get worse) about the potential shot to shut down my ovaries. Because my cancer was fed by hormones, the long term care plan is to get me fully into menopause. Which brings a host of unpleasant long term side effects to my body. Osteoporosis, muscle pain, joint pain, hot flashes, mental fog, etc etc freaking etc. My age is not my friend in this department, because even though chemo pushed me closer to menopause and I did experience a drop in estrogen and hot flashes... There's a very viable chance that my poor ovaries will start doing their job again. For now, my estradiol levels (estrogen in my blood) is *right* on the cusp. So if they stay where they are, I can avoid the monthly shot (into my stomach 🤮) and only take the other two unpleasant medications.

My rope, it stretches! It strains with every unknown turn and disappointment. But it also relaxes with each horizon I meet and become familiar with. It endures. And it is strengthened by everyone that is helping to weave new strings.

Pink isn't ALL Bad

2023-10-23T12:22:00.001-04:00

You don't know until you know... And now I know what it's like to be on the other side of awareness during October. Or Pinktober. Breast Cancer awareness month.

Via my multiple Facebook groups for women facing cancer, the resounding sentiment is that this month is difficult. A reminder for those that are survivors or thrivers. Or confusion over what this awareness is supposed to mean or actually accomplish. Some women are just happy that talking about it may lead another to finally get that mammogram. Some are triggered and some wish we had higher expectations for charities or companies just taking advantage of the chance to sell a pink T-shirt.

I don't like the pink NFL jerseys and I don't like the targeted ads selling me cute catchphrases about being a FREAKING WARRIOR. I want to see more money given to patients and their families, for help with medical bills and the costs of treatment. I want less trite slogans and more attention paid to aftercare. I want the FDA to pay more attention to dangerous food additives and to remove black box labels from estrogen therapy. I want more medical studies for women. We are doing a lot of this treatment wrong for young survivors that are trying to maintain a high quality of life.

The aim of "awareness" is so vague and unquantifiable, when breast cancer is the second most diagnosed cancer. We're aware. I believe it's a nasty loophole for certain charities to collect a lot of money and not really do much with it. We could raise awareness every second of every day - but if we're still pumping our food and skin products full of parabens (which mimic hormones), we're just talking to talk.

I am thankful that my ailments come with an automatic club membership. There is comradery, understanding and a plethora of resources as a patient. My disease is "seen" and many, many other people can't say that if they have something rare or untreatable. It's not lost on me that I will most likely live many many more years only because of the many many women before me, and the research knowledge gained by time and modern medicine.

I had a beautiful bright spot in the month where I'm rolling my eyes at pinkwashed advertisements. My friend, more specifically her daughter, invited me to her volleyball game. Of course I would always want to go but this was the first time she had asked me to come to a game. My brain said... Hey wait a second, it's October, you're in the middle of treatment for breast cancer and usually there's a Pink out or pink jersey game....

And it was. My dear, sweet Girl Scout that I've known since she was in elementary school gave me flowers and a balloon during her game. Tears were brimming on eyelids all around and I was brought back into the reality of why Pinktober might actually be more therapeutic than I thought. I forget how others are watching my actions, behaviors and words about cancer and the realities of treatment. I forget that sometimes we just need a pathway or ritual to mark a moment in time to acknowledge an ongoing endeavor.

October is now my birthday month and stark reality month! All together! I am counting my years and think about how I hope to keep celebrating this birthday month for ummm, lots of decades into the future. Reminder that there's thousands of people out there fighting breast cancer and thousands that had it long ago and thousands that need a moment to remember and honor people that were taken by the disease.

** I know I've blabbed a lot about charities that I dislike, but I'm finding many organizations that provide real solutions to cancer patients and their families. The National Breast Cancer Foundation is a good one! They send this Hope kit if you request one and you can also donate to help. ***