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

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

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"

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!

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

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

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

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.