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

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? 




Monday, October 30, 2023

About that rope... it snapped.

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. 


Monday, October 23, 2023

Pink isn't ALL Bad


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. ***




Monday, October 9, 2023

But do I have to miss dance class?

As the months go along, and I continue to take step after step to kill cancer cells and rebuild my body... My biggest question is beginning to revolve around whether I can continue to go to dance class. 

Obviously I still care about staying alive and free from disease. I still research the best diets and supplements. I still Google unpleasant things like "images of radiation sarcoma". I am tired and wonder daily if any symptom I feel is an infection or reaction to my breast expanders. 

But. It's that time of year when I want to be back in tap class!

I've held it together for the most part - facing chemotherapy and surgeries, all with overwhelming support. I was able to tell my coworkers that I had cancer without crying like a baby. I continue to be able to talk about my medical status, without embarrassment. 

The time I did lose my shit? When I had to tell my dance teacher this past March that I wasn't going to be able to dance in the recital. 

I figure I had to break down somewhere, and in the comfort of a dance studio is where I did it. I remember holding it together during class as we walked out our formations and my teacher put her finishing touches on the routine. I'm always amazed by anyone that can choreograph - and our teacher had just coordinated the movements of more than thirty women in our adult tap class. The dance was finalized, I had my spot... And I knew I wasn't going to be able to follow through. 

I asked my teacher after class if we could talk and ... I cried like a baby. I bursted out "I have breast cancer" and of course, the overwhelming feelings were fear and sadness. But I also felt guilty that I was fucking it up! We were arranged in "windows" and lines and a missing person messes it up. After all that work, I have this stupid diagnosis. 

My teacher was understanding. We'd had other people in the class out with knee injuries or pregnancy or whatever else happens to adult women! But if I'm being honest, THIS - my sacred hour on Wednesday night - was what hit me the hardest. 

I love dance. I'm not fantastic - but I love it. I have the fondest memories (that have only gotten more fonder ((is that a word)) as I've gotten older) of my time in dance growing up. That was my team sport. 

And it's my current team sport. I cannot express the good hearts of the women I'm surrounded with at the dance studio. They are supportive and welcoming and hella fun! They've followed up with me as I sat out of the dance recital and brought over meals, fresh fruit, care packages and beautiful plants. They wrote a shout out to me in the recital program that made me ugly cry. They are an incredible group of women. 

Having to step away (even if it was temporary) hurt like hell. 

I went back in September... Only to tap and not lyrical, since my recent surgery restricts my arm movement and strength. And when I found out I needed another surgery after going back to class - my first thought was not "damn it, more anesthesia" but "damn it, I have to miss dance class". 


Tuesday, October 3, 2023

Expanders, You Say?


!! Warning: this post contains a picture of medical bandages, some of my exposed skin and drains. Don't proceed if you're grossed out by such things. !!

When I told most people that I was headed back into surgery in September, the response was generally, "What? I thought you just had surgery..."

Well, yes, yes I did... but there's more to do. 

Breast cancer is a curious and frustrating thing to treat because most patients end up treating two things at once - of course you are taking the steps to minimize/remove/diminish the cancer but also attempting to rebuild your body. At this point in time, I am NED - No Evidence of Disease. (I'll talk more later about how that's a more appropriate term than "cancer free").* All remaining DCIS cancer and areas around my tumors were removed with my bilateral mastectomy and lymph node removal. 

However, due to the area of the body that was affected... I am working towards reconstruction. Even though I said goodbye to my breasts, I was not ready to go completely flat. I can choose to get implants or implants with fat grafting or something called a DIEP flap. I was making decisions left and right and honestly could only mentally handle preparing for the surgery, not life long implications just yet. 

So now I have these things called expanders. Basically tupperware underneath my skin that is gradually filled with saline to mimic the shape of your old breasts or the future implants. Their main purpose now is to hold space and prevent my skin from shriveling away to nothing during radiation. They aren't very comfortable but are getting better every day. 

And why must I still do radiation if I'm free of disease? Because my cancer was in the lymph nodes... trying to get everywhere else in my body. Radiation, and my future hormone blockers, are all modern day attempts to reduce reoccurence. 

This is a picture of me, wearing the Bair Hugger before surgery. It attaches to a tube which blows warm air under your gown, to keep you nice and toasty as you wait impatiently to go into the surgical suite. 


My biggest annoyance with going into surgery again was (1) the mfing drains and (2) dealing with anethesia again. I was very, very sick the first night coming home. I couldnt eat or drink , but was able to take anti-nausea meds and some CBD oil. I had the kind of sleep that one has during the stomach flu... where you're hovering below consciousness, literally feeling like you're holding back the vomit every second. 

The drains were put in different spots, as I'd really only had about a week drain free from the mastectomy. Luckily, one was placed on my stomach instead of my side - so I was able to sleep more comfortably. Those drains are just gross and inconvenient.

But now they're gone! 

I had the added robotics of these vaccuum sealed bandages. I carried around battery packs attached to bandages that offered constant suction. Really smart for reducing infection risks and avoiding surgical glues & stitches.

My scars look WAY better than one would imagine. I also think there's a huge misconception about what the body looks like after a mastectomy, as if there are huge scabs and incisions. I have relatively small "omega" shaped incisions that have already faded to a very light color. 


This is photographic evidence of how f@cking annoying recovery can be. And I can only imagine if you're squeamish or don't have a partner willing to help look at gaping holes in your skin! 

So, I've gone through another hurdle - while life continues to speed by with kids in school, daily reading, daily pick ups, permission slips, dance class and general need to eat food. Tomorrow is my meeting with the radiation department to figure out the logistics of the last big step of active treatment. 

*I have recently learned that it's not quite appropriate to say "cancer free" when it comes to my type of cancer, and probably others. The risk of reoccurrence is high. And removing my breasts didn't really change long term statistics... one can have breast cancer return without having breasts! Fun, right !?! So that's why I did chemo (to attempt to kill all of those unidentifiable cancer cells floating around). Some doctors don't like to promise their patients that they are officially cancer-free, because damn, you just can't guarantee it.*