The Beach Week that Giveth & Giveth

"It was as if my eyes were a camera and I was photographing the moment, knowing that I would keep that photograph forever."

Holden Beach Week 2023 - time holds still. 

The Good News, Explained

Yes I'm finished with chemo and all scans have shown that my tumors are "essentially resolved". 

No, I haven't beaten cancer. I completed step one out of about six and every bit of good news has come with not-so-awesome news. 

On my last day of chemotherapy - one of the doctors felt the need to remind me that hormone blocking therapy AND a chemo pill would definitely be in my future. I don't know if they mean to stress people out or temper expectations or if they just sometimes put their medical foot in their medical mouth. I've researched the shit out of breast cancer, so I knew this already. But do you have to remind me, like on my bell ringing day?!? 

Anyways, on the day of my most recent mammogram - the radiologist broke the news that my tumors had shrunk down to nothing AND that there were still suspicious areas to biopsy... All in about 30 seconds. Good news and not-so-awesome news. 

I know that any medical diagnosis is full of twists and turns, and while I appreciate everyone's curiosity - I can't predict what steps are next and how long they will take. I'm still unsure exactly what my surgery will entail and they cannot predict the length of radiation until pathology from surgery comes back. So it's just decision after decision, and changing my expectations. 

My surgeon seemed to be the best at explaining my scans and giving us a moment to celebrate and express relief that chemotherapy was very effective. 

This information was really clarifying to me - it shows how doctors rate the effectiveness of chemotherapy. They had warned me a few times that estrogen-receptive cancer does not always respond well. And that was my biggest fear going in - I just wanted chemo to work. I am a 5! 

No invasive cancer cells are present. BUT, and this brought me down until I understood it... I still have "ductal carcinoma in situ". There were several calcifications and a 1 cm mass that needed to be biopsied. I had that procedure last week and it was extremely nerve wracking. If anyone wants to talk in detail about stereotactic biopsy - I can now add that to my cancer resume. 

That was me, not looking so cute, as the radiologist said "I tried to use enough lidocaine, tell me if it starts to pinch". This is while a 9 gauge needle is deep in my breast. 😱

So while I do have cancer "in situ", it doesn't respond to chemo because it's not yet invasive. The cell makeup is different. It's still in there and it's been added to list of items/areas that need to be removed during surgery. 

A lot of advice is given to stay away from Google... But it's been helpful for me to keep gathering data. Even if it's scary. The medical reports make much more sense. I had a scary grade 3 tumor and will need years of hormone therapy. I Google symptoms and read comments from women in cancer support groups, and sometimes I need to put the phone down and slow my heart rate. But it's still better than just winging it. I want to have the potential questions in my head before meeting with doctors. It makes me a better patient. 

Before all of this, my knowledge of cancer was pretty much non existent. I thought that the end of chemo or the end of radiation marked a type of victory. It really doesn't. I will forever be unsure of whether this will come back - I am going to treat my body like a ticking time bomb and will have to manage my symptoms and hormones as if this was a chronic illness. I share this because I hope we can all become better informed and be better support to anyone with a cancer diagnosis. A lot of the work goes on *after* treatment. 

I'm going to take this temporary win and keep Googling and keep making the best decisions I can. 

The Building Filled With Emotions

My experiences with hospitals before 2023 were mostly positive. I had a very unpleasant six months with gallstones and gallbladder removal in 2016, but in the end - the hospital solved my problems. Most of my stays have involved giving birth and I got to leave with the reward of a healthy newborn each time. I don't feel creeped out in medical environments, it doesn't conjure negative feelings. 

But Roswell Cancer Center is a different place. 

The emotions are palpable. Every person here is either hearing the worst news or best news or waiting for results or visiting someone they love deeply. Anger, fear, elation, anxiety, disbelief, weariness, uncertainty, devotion, hope, restlessness, frustration and curiosity. I know I've felt them all. 

In the first dark weeks of finding out I had cancer, not understanding the pathology results and not knowing yet if it was in different parts of my body - I felt a lot of self pity. But once you're checking into the chemotherapy reception and it's apparent that so many other people are going through the same treatment - self pity turns into solidarity. This is just something that happens. Sometimes I saw couples that were both wearing patient wristbands and I found something to be grateful for. 

Where there is a lot of uncertainty, there's also a lot of love. My heart breaks for every couple holding hands as they walk into the hospital. We saw the sweetest duo of a grandfather and his granddaughter on the chemo floor. You can see the fear, but also the determination to at least TRY and beat these rapidly multiplying cells in the body. 

The kindness of the staff - the radiologist revealing the results of a scan, the oncologist listening to side effects, the nurse asking if I'm ok as my stress tears come out and I'm sniffling during the MRI. The nurse who listened to my complaint about Benadryl making my legs restless and she took the time to administer it slowly. The overnight nursing assistant who brought me blankets. The thousands of interactions going on at any given moment. 

If you believe that energy hangs in the air, or inhabits a space - especially when it's intense; then you have probably felt this in places like hospitals, churches or even schools. For my own intense feelings that I brought into the building, multiply that by a few hundred. 

I said a meta prayer in every waiting room, for all of the friends and family who traveled together to face the beast . This stressful, unrelenting beast. 

Chemo #8 - The One Where I Ring A Bell

Chemotherapy put our lives on pause. It was hard to think about what would happen afterwards, in the middle and each day - although the last four treatments of Taxol were far less abusive to my body. 

Every time we stepped into the hospital on chemo day and they'd take my blood sample to make sure I was healthy enough for treatment - I'd pray that we could just stay on schedule. Anything difficult is easier to endure when you have an end date. 

I don't know when the tradition to ring the bell at the end of treatment began, but I was unsure whether I wanted to do it or not. The bell at Roswell is in the main lobby, off in the corner. We'd never heard or seen anyone use it and it almost looked like a prop instead of something to really use. 

But, I rang that bell. In the lobby, it echoes up the four levels into the atrium. It's loud and clear. My in-laws were there and brought our kids - a moment for all of us to celebrate the end of this weird, weird time. I had been tearing up all day thinking about how victorious it was going to feel. I was holding it together until everyone in the lobby clapped and cheered for me - who knows how many of those people had gone through the same experience. I think they should also add a neon sign that blinks "F#$K CANCER!" 

Turns out I'm Veruca Salt

I don't exactly want a goose that lays golden eggs or a bean feast or to cheat my way into Willy Wonka's factory - but I am a Veruca. I want a lot of things now and I always want more. 

Part of what I keep thinking about is my age... I feel incredibly young to be dealing with this diagnosis. I know I'm not when you consider pediatric cancer and the reality that I've lost several friends when they were only in their 20s. I've had twice as much as life, twice as many experiences. But it's not enough! I'm not done. I want more!!! I want to lock it all up in my pocket, it's my bar of chocolate!

I've been reading several books by Kate Bowler - a woman whose life was also disrupted by cancer at the age of 35. (And here I am complaining about being young at 42!). I find her so comforting because she's HONEST. Her book "Everything Happens" is what I needed to read as I was grappling with the why of cancer. Why me, why now, why the f$#k honestly. She is a religious scholar and has spent much of her career dissecting the idea of the prosperity gospel. A lot of churches preach these ideals - that if you obey God, you'll have wealth, health and happiness. That you can "earn" it all... just keep titheing, praying and behaving the way your pastor tells you to. I've had people tell me that my treatments won't be as effective if I don't give the glory to Jesus first. (Eyeroll.) 

The title of the book is a rebuttal to the platitude "everything happens FOR A REASON." I don't think it does. I think we can take power in our reaction to anything that happens to us, but I don't believe for a second that there's a reason for every shit thing that happens to us. I don't want to downplay an idea that brings comfort to so many people - that God has a specific plan for us. If that works for you, wonderful. We are all navigating this confusing, overwhelming experience. But sometimes things just happen. For me, it has saved me a lot of heartache and wonder to just accept that cancer has happened to me and there's no rhyme or reason. 

But anyways, Kate Bowler also had a very young child at the time of her diagnosis. And her fears spoke to me - the thought that she wouldn't see him grow up. I'm doing the math in my head all of the time - if my treatments work, and I live another 20 years... at least my kids won't be traumatized by losing a parent when they are young. If I only live another 5 years - that's a very different scenario. All the time I now potentially have ahead of me seems borrowed. In her book, Kate talked about sitting in her son's room and swapping out his clothes from one size to the next. Probably the most quintessential MOM thing to do. And when you are questioning your mortality - there's nothing I want more than to be sorting Finian's 4T clothes and buying his winter wardrobe in the next size up. I want to be there for all of it. 

I selfishly want more. I want to see my kids grow up, into middle age. I want to be there with my husband - to live longer than I have already experienced! I keep envisioning myself as a little old lady - who sends birthday cards with cash and works in the garden and knits baby blankets. I want to travel. I want to keep teaching kids how to sew. I want to go to dance class and watch my kids at school concerts. I want every graduation; I want every milestone. I want camping trips and afternoons at the beach. It will honestly never be enough. I'll never be satisfied. Who could be? At what point do we say - well, I've had enough time with the people I love? 

I do know that the time we're given is an amazing gift. I'm realizing that my connections to others IS the purpose. Or at least my purpose. So maybe I'm not a complete Veruca. 

Chemo #7 - The One Where I'm Still Bald & Summer Has Begun

The most recent chemo infusion on Monday was relatively uneventful. This was chemo #7 - only one more to go! Each week I'm terrified that it's somehow going to be delayed, interrupted or cancelled and I'll have to change my END DATE on the calendar. I want nothing more than to check this off on July 3rd and never see the 4th floor of Roswell Cancer Center ever again. 

My sister in law drove from Boston to help watch the kids on Monday, and to help prepare meals and generally let me sit on the couch. Or outside by the pool where I subsequently got a headscarf tan line! That's a first and probably not the last for the summer. I don't know if you can tell in the picture - but there's a clear line of tan vs not tan bald head. I also have a fine downy baby goose-like fuzz from the hair that never fully fell out. As I like to joke with the kids, "I'm still bald!". Some people say their hair starts to grow back during the last weeks of Taxol chemotherapy, but we will see. For now, I'm navigating the high temperatures, sun and sunscreen. 

The month of June is a lot for us. It's an emotional roller coaster of end of school year activities. I tear up with nearly every announcement of field days, graduation activities (even though I don't have a kid in the fight this year), choral concerts, final exams, SATs and prom. We did all of this and more in the first weeks of June. For the most part, the kids did an excellent job getting themselves where they needed to be and putting their best efforts into getting good grades. And Miss Delphine finished Kindergarten, which is wild to me. 

A lot of people ask how the kids are managing with my cancer diagnosis - and my answer is still unsure. I mean, we have teenagers in the house... so the level of "caring" is hard to gauge. Do they ask me how I'm feeling sometimes? Yep. Did they tell their friends or teachers about what's going on at home? Maybe not until they absolutely had to. Or maybe everyone was just too busy moving forward to fall apart. (I might be a model for that kind of behavior.) We never openly panicked about my diagnosis and while sometimes I wish the kids would step up with their help around the house, I can't blame them for taking it all in stride. We aren't acting helpless or melodramatic about my treatment, so why should they? One step at a time, and maybe freak out in tiny increments over the unknowns.

Next steps: We've planned a little travel in between the end of chemo (still fingers crossed that the last treatment goes as planned). We are traveling to my other sister in laws' civil ceremony in California since the trip to France to see the full-fledged wedding ceremony was not in the cards for us this year. After that, on July 22nd and 24th, I will have my next set of scans - a breast MRI and another mammogram - to determine how successful chemotherapy has been. The good news is that I already cannot feel the tumors that sent me to the doctor in the first place, so I know they've shrunk. Then I will meet with my surgeon to talk about the next steps. I feel like I've put in the "hard work" with chemo and can hope that surgery will be minimal and my recovery time quick. 

I'm very much looking forward to ringing the bell to signify the end of chemo and getting off this feel good/feel crappy/feel tired rollercoaster. 

Books to Soothe the Soul

I hope it's a well known fact that I love to read. I have spent the last couple of years trying to increase my yearly total (and yes, sometimes I include young adult fiction to boost my numbers!) Reading is a great escape, informant and way to "waste" time when bound to the couch. The chemo fatigue is catching up with me and usually for the week after an infusion, just standing is enough to tire me out. So reading soothes my anxiety and helps to get through the hours that I would otherwise be thinking about all that I wish my body would let me do. 

This first book was included in my free tote from the WNY Breast Cancer Network - I can't express enough how reading through medical terminology has calmed my nerves. Even before bedtime! One of my methods of dealing with a cancer diagnosis has been to take the personal aspect out of it. I certainly cried a lot at first, wondering why this was happening to me. But once I stepped back and viewed my treatment as something that was happening to my body, and not ME (my soul, my identity), it has helped immensely. I can read about my symptoms or treatments or surgical options without feeling like I am being attacked. I have an illness, one that could be far worse, and there is a ton of research about it. And oddly enough, Google has been soothing to me as well. I worry about the current step (what will this chemotherapy drug do to me? Neuropathy? Allergic reaction?). I also worry about my future with hormone therapy, menopause and the multitude of side effects that I could be dealing with for the next decade. But I actually sleep better when I read about these things and the medical rationale for whatever drug is prescribed next. Taxol clings to cancer cells in a different way than the previous chemo drugs - it is prescribed for longevity and prolonged survivability. The estrogen blockers that I will need to take will change my body's chemistry in a way, making it less hospitable to cancer. These are the things I need to read to sleep at night!

 

This next book was picked up at the library sale. If there's anything I'm not, it's reclusive. I thrive on interaction and pride myself on relationships. But I found this story of a man who lived alone in the woods for 27 years to be amazing. I get it, in a way. The open pockets of time, the connection with nature, the pure nothingness of his existence. His only downfall was that he needed to steal from nearby cabins to survive - he was not prepared to hunt or sustain himself. It was an interesting lesson on hermits throughout history and why they are so intriguing to the rest of us. 

And this last book is one that needs not much of an introduction. I enjoyed Michelle's first book slightly more, but I love her way of explaining her life and what's important to her. Mainly, relationships. It's a "how to" on making connections and putting yourself out there as an adult. We're all so afraid of embarassing ourselves or being the first one to ask a new friend to coffee... fearful of rejection. Imagine being middle aged with small children, leaving your career and still realizing you need Mom friends while moving into the White House (and fearing that any new person could quickly turn to the tabloids to spill your secrets). The fear could be paralyzing. 

It reaffirms what I believe is our own responsibility to nurture friendships - I don't understand how some adults think they happen otherwise? Be the one to reach out in a text or remember someone's birthday. My current stressful situation has only been sustained by my relationships. People actively showing they care, and I hope I can reciprocate in the same way. 

And as for any books I've read, they are always up for grabs and I'm happy to mail one in your direction. Except for my Breast Bible - I need those statistics and surgical options to sleep at night.