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. 

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. 

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. 

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. 

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? 

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. 

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. ***