I Always Feel Like... Somebody's Watching Me!

Thursday, February 8, 2024

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. 

Tuesday, January 9, 2024

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. 




Thursday, December 14, 2023

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. 


Thursday, December 7, 2023

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

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. 



Friday, December 1, 2023

Hear Me Out... Money Can Buy Happiness

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. 






Tuesday, November 28, 2023

A story of malfunctioning radiation machines and hair growth


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. 


Friday, November 10, 2023

Where radiation and MAGA hats meet

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?