Mercy

I pre-existed. Even if I had never had breast cancer, the very fact that I am a woman, is a strike against me. If we are to believe that the GOP has just secured a victory for America by sending a bill to the Senate that denies access to care to over 24 million Americans, and jeopardizes those with pre-existing conditions by leaving it up to the states to decide if insurance companies should be compelled to offer them fair, affordable, and comprehensive coverage, then I have a little piece of the Brooklyn Bridge I’d like to sell you.

This bill — like this congress and this administration — has no moral compass. It penalizes the sick, the elderly, the disabled, women, and children. It divides us by fate and fortune. The healthy, wealthy, and young are all over social media claiming they should not have to pay more for the sick. They have no desire to be their brother’s keeper. Of course, when you believe you use “less healthcare” than others, or when you are wealthy enough for it not to matter, it is tantamount to pushing your way to the head of the line, to the very threshold of the red carpet because you believe you are somehow more beautiful, more worthy, more monied than those waiting in line. It is privilege at its worst.

By now we all know that the Senate has deemed the House bill unsustainable. They will amend, or they will start over, but our fate is still in the hands of a political party and politicians who feel no sense of obligation to the greater good. They are the pull-yourself-up-by-the-bootstraps crowd. They simply can’t imagine why government needs to provide for its citizens. They have no compassion, no empathy, and no sense of responsibility to those they represent.

I’m happy to go on record to state that I will gladly pay more. I will pay more to ensure that those less fortunate do not go without. I support every effort to make access to affordable care universal — I do not believe I deserve more than my neighbor, even though my neighbor may believe he deserves more than me.

The lack of leadership in Washington is bringing this democracy to its knees. But we cannot give up; we cannot go quietly. Our voices must be heard. We don’t need to be perfect or solve all the problems, we just need to show up. There’s honor in that alone.

And if they still think that some among us should be penalized with less access to care and higher premiums, well then nothing anyone says is going to give them a heart or convince them that caring for each other is the reason we are all here. They can gloat all they want about being young and healthy, or rich and immune (like some members of congress) — but let me just say this: There but for the grace of god they go.

And should the moment come when they find themselves standing in my shoes — or in the shoes of anyone whose health and financial security is at risk — I pray that someone kind, someone with a heart, someone who has selflessly chosen to be his brother’s keeper, has mercy on their souls.

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Two steps back

Even though we are leaving for California in exactly 10 days, I decided not to wait, the pain really was too much. I’m back in PT. I have somehow managed to do damage to my upper pec muscle and AC joint on the left side. It would seem boxing is a very bad idea when you have internal stitches and so much scar tissue restricting your natural range of motion. The good news is nothing seems to be torn, the bad news is it’s going to take a long time to properly heal.

I let my guard down. I was feeling good. I thought, why not go back to one of the activities at the gym that I enjoy? (There are so few…) As my PT reminded me, that shoulder was a trouble spot even before my surgery. All the more reason to be extra careful now.

I have three more PT appointments between now and our departure. Fingers crossed that I can get some relief before we go and that eight weeks of low impact moving will give me a chance to heal.

All that is mine

It’s been quiet here since we got back from California. I’m not working right now, but I’m not that worried about it either. The truth is, I’m not that concerned about much of anything these days. I tend to be of the mindset that things will fall into place when the time is right.

I’m using the quiet of my days to plan and purge and pare my life down to the bare essentials. It’s my way of letting go — of all of it, really. The flotsam of my life. I am figuring out that moving forward for me, truly healing and recovering and separating from what I’ve been through, demands a certain amount of easement. I need less things to keep track of or take care of or hold on to. This week that has translated into something close to 12 bags for donation and more items set aside to be sold. I feel lighter, freer, less tied to the past.

I had an appointment with my oncologist Wednesday. The paradox of these appointments is that they are unsettling and yet somehow comforting, too. I don’t like to be reminded that my cancer might come back.  It isn’t the only thing we talk about, but still, when you are chatting with an oncologist, cancer is without a doubt the elephant in the room. I like the fact that his eyes mostly smile and that he is kind. I feel safe with him, even when I don’t like the things he is telling me, like the fact that my bloodwork indicates I need to go back on the Lupron shots for maybe six months to another year. It’s a minor thing, really. A stupid thing. But it’s one more drug that ties me to being a “patient” and I don’t want to be a patient anymore. I guess, truthfully,  most days, I’m not. Most days I am not living in the moment of what was. Most days I am looking forward, not back. But even that can get tricky.

I’ve been thinking a lot about how this moment is mine. Sometimes I see it all so clearly; but sometimes I don’t. I want to let go of what doesn’t matter, the feelings and fears that clutter my mind and my heart. The physical stuff too. As much as I’ve regained my strength and mobility, some things linger. Some things I think will never be like they were. So while I don’t think about cancer every day, it’s still somehow there in the shadows. I guess that’s inevitable. When an experience forever changes you, there’s no going back. And really, for me, so much of the change has been for the better. But some of it has left me feeling restless and unsure.

There are times when I wish I had a map, a guide of sorts. One that clearly outlines steps to take on specific days. But there are no maps like that, and life is too changeable, too organic for anything like that to hold. So I focus on today, and consider only the things I really need, the things I really want. Find a place to sell the wedding gifts that have never been used, a good home for little treasures that once mattered but now feel like an anchor around my neck. Every day is a do-over, a chance to embrace the changes that are good and let go of the things that hold me back. The day that sits before me is really all I have. To make it mine, I have to have faith. I have to believe that things will fall into place when the time is right. And if that means turning away from the elephant in the room, so be it.

What we do

In a few short days, my son and I will be in LA. My sister texted, “Leaving your surroundings will be good for your soul.” She’s probably right. This week has been too quiet. I feel lost. Without work, without deadlines, I’m not sure what to do. I have too much time to think. The project I’ve been working on the last few months is wrapping up. I turned in my last story a week ago. Something will take its place soon, but for now, I’m kind of on my own.

I’ve been wondering what I want to do with my life. There was a time where the short, simple answer to that question was write-a-book. Now I’m not so sure. It seems like a vain and pointless effort. If I were younger and unattached and not somebody’s mom, I think I might join the Peace Corps. Or go to Africa with these folks. There’s something about the last year that has changed who I am and who I want to be. I know it’s been a combination of things, a layering of cancer and mortality and simply surviving. Like all things in life, it’s complicated — but what I feel, what I’ve become, that’s very real. I’m no longer on the same path.

I look around and I am comforted by what is familiar, by what feels safe. And yet I know all of it is fluid and changing. Nothing lasts forever. Life doesn’t move in a straight line, it moves in circles, eventually bringing you back to places you have already been. Relationships evolve, there’s that constant ebb and flow, what matters now might mean nothing in a year. Or it might mean everything. I don’t know what I want, what I’m hoping for, but I don’t think I’m going to find it in the places I’ve already been looking.

My son has big plans for our week in LA. He has a life in California, it is his other home. He falls into it with such ease. And I am grateful for that. The big questions I wrestle with, the unknowns I hope to somehow uncover, I have no idea how or where to begin. It’s easy to settle into the old routines, to just keep doing what we always do. That’s what happens, right? It’s so hard — impossible, maybe — to act on our longings, our desires. We just keep doing what we always do. I’ll never join the Peace Corps. Or go to Africa. But maybe there’s something else.

We talk in circles about the future, about what is possible, or not possible. But for a few minutes last night my husband and I talked about it in real words, attaching real dreams and ideas, and it felt hopeful and good. Sunday morning we’ll board a plane and fly home. My son will bask in the admiration of his LA people and, for a few short days, we will settle into familiar routines. We’ve carved out a pretty wonderful life — this bicoastal thing we do — but I see the balance beginning to shift. I really don’t know what the future holds, but I’d like to think there’s a promise in there somewhere. A chance to start something new.

In the meantime, California, I’m coming home.

 

When we fall

Yesterday I took a nasty spill on the driveway. I don’t even know what I tripped on, but I went down hard. My knee and my hand are still seeping (the downside of taking a baby aspirin a day), and my whole body is sore. I feel like my arms were wrenched from their sockets and then shoved back in. I can’t raise my arms over my head, everything is out of whack. I told a friend that it felt like I may have dislodged a breast. “Can’t be,” she said. “Those things have got to be built to last.” She’s right, of course. But this is what you think of when you fall down hard on your newly reconstructed boobs.

It’s an adventure, that’s for sure.

I just finished reading Atul Gawande’s The Checklist Manifesto. If you don’t know who he is, google him. He’s a doctor, author, and frequent contributor to The New Yorker magazine. I love his writing, and I loved this book, but it made me realize how incredibly lucky I am to have come out of my surgeries in one piece. Because, while doctors and nurses are exceptionally well-trained, things can go very wrong very quickly. Sometimes the only thing standing between you and death is the troubleshooting skills of your medical team. And for that, you better hope they have a checklist. A cognitive safety net. Because, like it or not, we’re only human. Memory and judgment are fallible.

I read Gawande’s book for a story I’m working on. I’ve been working almost nonstop since September, and it’s both a relief and a blessing. I love the things I’m writing about. The topics are never boring, and while it’s time consuming and research intensive, I love what I’m doing right now. I also adore my editor, she’s a writer’s dream. I know it won’t last. These things never do. It’s the nature of the freelance beast. But for now, it’s exactly what I need and what I want.

Which brings me to my final thought: This post-cancer life is such a strange balancing act. There are days when I feel almost normal, almost whole. And there are days when I can’t even look in the mirror, when the thought of seeing my physical scars, overwhelms me. There are days when I feel strong enough emotionally to tackle the on-going insurance and financial fallout, and days when all I can do is crawl back under the covers and sleep until my son gets home from school. Sometimes I can’t stop thinking about the possibility of rogue cancer cells multiplying and re-staking their claim inside my body, and sometimes I think I will most likely live forever.

But the truth is, it’s not that much different for any of us. Cancer or no cancer. Life is hard, sometimes harder than we can even imagine. The good, the bad, the scary. It’s all tangled up, isn’t it? And there’s nothing for us to do but keep moving — and hope we don’t break anything when we fall.

 

 

On a lighter note…

Something I haven’t talked about at all here is this sudden strange and ongoing problem with my teeth. I can’t pin it to any drug side effects or collateral damage from the cancer itself, but I’m absolutely convinced it’s related in some way.

I had to have my back lower molar on the right side (tooth #32, to be exact) extracted within days of our return from California due to an infection in the bone. And now, on Monday, I am scheduled to have the top molar directly above it (tooth #2) extracted as well. It’s just weird. All this mouth pain. At first I was convinced it was because I grind my teeth at night. After all, I’ve been under a bit of stress and in that weird sleep/wake state that passes for a night’s sleep for me, I know I’m clenching my jaw, pushing my teeth into each other with a ton of force. But it seems there’s more to it. The theory is that tooth #2 is fractured, even though nothing shows on the x-ray. My sensitivity and pain is through the roof.

My dentist tells me that neither one of those molars is necessary, and in fact, it’s probably going to feel more natural and less awkward when the top molar is extracted. As it stands now, that tooth has no partner on the bottom row, so chewing on the right side is an incredibly strange experience. Tooth meeting gum is just weird.

I guess the good news is that there’s really no cosmetic impact. You’d never notice that my last molar on the top and bottom are missing, even if you looked directly into my mouth. But I have to tell you, it totally pisses me off. I feel weirdly ashamed that my teeth are falling out, or being pulled out; it seems like such an unnecessary insult on top of everything else.

One of the side effects of the Aromasin is bone and joint pain. My dentist won’t rule out a connection, but there’s nothing in the drug literature that specifically mentions teeth. I know I probably haven’t been on the drug long enough for it to have that kind of an impact, but I really want to lay the blame somewhere.

I’m more nervous about having this tooth pulled Monday than I was for either of my surgeries. I had the first pulled with nothing more than Novocain to cut the pain. The timing was so close to my surgery that I was worried about having too much anesthesia on top of anesthesia. Now that I’ve had such a bad reaction to the surgery anesthesia, I’m reluctant to go under again for the extraction, even though it’s an option. I’ll probably stick with the Novocain, even though this time I kind of know what I’m in for — and it’s not pleasant.

Last night one of my editors emailed a list of stories to work on. One of them was about wearing a mouth guard. I responded right away and said, my teeth are a disaster and there’s no way I can research and write about this topic. We had a good laugh and she offered an alternative. I only wish I could change my life as easily as I was able to change the assignment.

Moving forward

A week ago we arrived back in New York…and pretty much hit the ground running. California already feels like a life we used to know.

I’ve been taking Aromasin for seven days now and the only troubling side effect, so far, is insomnia. It’s hard to know if my sleeplessness is due to the drug or to jet lag or simply to the fact that I’ve become a terrible sleeper in recent years, but when I am binge watching Amazon Prime at 2 a.m., it’s kind of a problem. My oncologist, Dr. D, is pretty great and I love the way he matter-of-factly outlines all the what-to-expects. The thing he’s most worried about is severe pain in my small joints, but so far, I’m okay. I know it can take weeks, even months, for some of the side effects to reveal themselves, but overall I feel good and I’m hopeful that this will be the right drug for me.

We met with the head of my gynecology practice last night to talk about whether I need surgery to remove my ovaries. I was surprised to hear that any surgery in that area would be complicated by the fact that I have a 47 cm incision running from hip bone to hip bone and that laproscopy may not be an option in my case. I was also surprised to hear that this particular doctor/surgeon does not think I need surgery. I’m paraphrasing, but she feels the gains wouldn’t necessarily justify the risks; I’m too close to natural menopause. She’s going to consult further with my oncologist to ensure that she isn’t missing any information and review all my blood work and labs.

Even though we didn’t make a definitive decision about how to move forward, her hesitation and cautious approach line up nicely with my own instincts. The less surgery, the better. And it kind of clears my head on finishing up my reconstruction. The closer I get to that surgery date, the more ready I am to let my plastic surgeon finish what he started.

And so it goes…

I’ve been on the Tamoxifen for just about 10 days now, and while I’d love to finish this sentence with the words “and it’s still no big deal,” I’m not quite there. On Tuesday morning, I noticed a rash on my legs, but because it didn’t really hurt, I just kind of took note and went about my day. By Wednesday morning, it had spread to my right arm and I thought maybe I should alert someone… but who? I have about a bazillion doctors right now.

I called the dermatologist, who was able to squeeze me in same day, and put another call in to the oncologist. Dr. S wasn’t in, but her colleague told me to stop taking the Tamoxifen immediately, or at least until the origin of the rash is resolved. His concern was that drug-related rashes are often a precursor to more serious side effects. “At the very least, the rash could spread to your mouth, eyes and throat, and cause breathing problems,” he said.

An hour later, my dermatologist had taken a biopsy and sent me off to see an allergist. The allergist agreed that it could be drug related, but insisted I stay on the Tamoxifen. “My fear is that if it is the drug and you stop and then try to reintroduce the drug later, you will trigger a much more severe reaction.” This doctor treats a significant number of cancer patients who have allergic reactions to chemo, and he seemed pretty savvy about the drugs and their side effects, but at this point in the day I only wanted everyone to agree — after all, what do you do with a medical draw?

In an effort to take the focus off Tamoxifen, I told the allergist about the smoothies. “I really hope it’s the smoothies,” he said. But it’s not the smoothies. Eight skin patch tests and I didn’t react at all. I’ve been almost 36 hours smoothie-free and the rash isn’t fading.

The allergist told me I am a medical mystery (this was later confirmed when three people in his office tried to do a blood draw and found that I have no veins in any of the logical places), but he said his entire practice revolves around medical mysteries so I shouldn’t worry. Allergies are not always easy to pinpoint. Sometimes the body reacts only when the exact right combination of factors exists in the exact right environment. After nearly 2 hours of skin patch tests and 3 failed blood draws, he sent me home with instructions to take Zyrtec as long as I can see the rash and call his office in a week.

The biopsy results should be back in a few days, but I’m pretty sure they won’t reveal much. For now, my dermatologist and allergist are calling it a “hive-like” rash but are puzzled by the fact that there’s no itching. Everyone has left messages for my oncologist, who I’m sure will weigh in on the situation today.

This is the first time that I have taken a drug because my life kind of depends on it. So I was surprised at the level of concern and care and diligence on the part of these doctors. No one wanted to be the one to say, this drug isn’t for you. And while the oncologist told me to stop taking it, he assumed it would be a temporary stop. The allergist knew a temporary stop might become permanent if my body was breaking out the histamines to ward off the foreign substance.

If the rash stays as it is, if it stops spreading, and doesn’t hurt, I can live with it. I don’t love it, but I can live with it.

I’ve read that sometimes it can take about 6 months for your body to adjust and kind of settle into the side effects of Tamoxifen. Some women may have problems early on that fade over time. Maybe that will be true for me. Either way, I guess I just keep moving forward.

I keep thinking of the first thing the allergist said to me when I told him my story. “If it is the drug, we’ll never really know. We’ll only know because we will have figured out that it can’t be anything else.”

Almost normal

It’s easy enough to figure out what people want to hear. When the question is asked — how do you feel? or, how are you doing? — there really is only one response. I smile and say I’m feeling good or I’m doing well, but the truth is it’s so much more complicated than that.

My go-to response lately has been, “I feel almost normal.” I’m not sure what that means exactly, but I like to think it relates a greater truth than simply saying I feel good. Normal is one of those words that means so many different things, and yet it really means nothing. What is “normal” anyway?

Maybe normal is being able to raise your hands above your head without pain, or sleep comfortably on your side. Maybe it’s being able to reach behind your back and hook a bra strap, or comb the back of your hair without feeling like your arms are coming out of their sockets.

Yesterday I realized that I can reach the top hangers in my closet with my left hand, something I haven’t been able to do since before my surgery. I can stretch my arm up to that high rod and I don’t feel like I’m going to tear open the entire left side of my body. I have more stamina, too. I’m definitely stronger, though not quite back to my pre-surgery self. On Sunday I walked to the local CVS to pick up a prescription. Maybe because it was so much colder than I expected it to be, or maybe because the walk was a little longer than I remembered, I was winded and wiped out by the time I got back home. But I did it. Three weeks ago, my walk was still an unsteady shuffle.

I look at my body in the mirror and I’m not sure how I feel about it. Some things have changed for the better, but other things, things I worked hard over the years to improve on my own  (like my upper arms) seem a little worse for the wear. I know it’s mostly temporary, but still.

I had an appointment with my gynecologist yesterday. I needed an exam to get clearance from her to start the Tamoxifen. She is also a breast cancer survivor and has been on Tamoxifen for just about three years. We talked a lot about the side effects. In her experience, it’s all been minor stuff — hot flashes and trouble sleeping. She said she was very nervous about taking the drug at first, but that it’s really been no big deal.

I can handle no big deal.

I am impatient with my recovery. When I start to slow down, or feel that weird pulling across my abdomen, I get discouraged. Sometimes I’m still very uncomfortable and I get frustrated by that. But for the most part, those feelings don’t linger. I am not hanging out in the house of blues by any means. Most days I am kind of in awe of this whole process — the fact that doctors can “fix” you in this way and your body just kind of bounces back. It’s truly amazing.

When I tell people I feel almost normal, I know it can’t mean much to them. They may think of what their own normal feels like and just assume it’s the same for me. And it could be. But my normal has changed. I’ll never be my pre-diagnosis, pre-surgery self. Physically, I’m changed. Emotionally, too.

For most of my 30s and 40s, I worried my way through dodgy mammogram results. There was always something “to watch” or to biopsy. And now the thing I feared the most has happened. I got cancer. But it didn’t play out the way I expected it to. Treatment was swift and decisive, recovery has been pretty much okay. None of it was as bad as I expected it to be, and yet I am forever changed.

So if you ask me how I am and I tell you I feel almost normal, understand that I say this because I don’t know what else to say. I’m not sure I can ever give voice to what’s really inside my head, to the things that have been lost and the things that have been gained.

I do feel almost normal. But it’s so much more complicated than that.