Random and spontaneous

I let my mind drift frequently these days to the alternate universe, the one where we have moved to California and all our problems are somehow washed away by the blue waters of the Pacific. I stand on the cliffs and look out to sea and I am surrounded by blue and that amazing California light. The dream heals my soul.

Yesterday as we rushed from ophthalmologist to ophthalmologist in what turned out to be an epic day of doctors and lasers and waiting, all to repair a horseshoe tear in James’s retina, I completely forgot that I was waiting for a call from my oncologist. I held my cell phone in my hand through the first two appointments, sure the call would come at a moment when I couldn’t talk — caught between two doctors, the one in the room and the one on the phone — but eventually, I stuck the phone back in my bag, overwhelmed by what was happening in the moment. I forgot, too, that I had silenced my phone, so when the call came sometime after 7 pm, I almost missed it and then, not recognizing the caller id, almost decided not to answer.

The body seems to have a mind of its own, and mine is unwilling to go quietly into menopause. My ovaries insist on continuing to produce estrogen despite the fact that I am 55 years old and have been drugging them into submission for two years. I am unsure, but maybe beginning to regret that I didn’t have them removed at the time of my surgery — removing them now is complicated by the fact that I have so much scar tissue in my abdomen, a byproduct of my reconstruction. I don’t think removing them at the time of my original surgery was really an option either, but I wish it had been. I don’t think we knew until after my mastectomy what type of breast cancer I had, I don’t think we knew that estrogen was the enemy.

For now, the plan is to wait a month and retest. If my numbers aren’t what they should be, then I will go back on the Lupron, or maybe revisit what surgery would look like at this point. When I asked my oncologist if being off the Lupron for another month was going to somehow make recurrence more likely, he said that’s not really how it works. It’s complicated. And while he applies mathematical formulas and plays a statistics games, the reality is we don’t have any idea what the future holds.

Sometimes life is as random and spontaneous as a horseshoe tear in the retina, sometimes it is as beautiful as my California dream, and sometimes it just is what it is — a long string of fortunate and unfortunate events. I used to think there would be plenty of time, that I could hold on to my dreams for years and they would be there, waiting, whenever I was ready. But I know more now. I know that time is the one thing there is never enough of, and dreams don’t wait.

I no longer think about my cancer every day. But every once in a while it pushes its way forward, demands my attention, and the only way to push it back is to address the fear all over again. In the end, I know my body will betray me — despite my best efforts. No one has forever. Yet, I hold tenaciously to my dream, to California, to the misguided notion that moving my family across the country — to the place I still call home — will somehow heal me and set us free.

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Amazing grace

My sweet friend Gretta died on Sunday. Ovarian cancer. Fucking cancer. I am at a total loss.

We grew up together, and then, somehow, we got cancer together. Gretta was already a year into it when I was diagnosed. And though her initial surgery and treatment were a success, she learned her cancer had come back right around the time I had my first biopsy. When I told my mother I had breast cancer, the first person she called — the first person she cried with — was Gretta’s mom.

When I think of my dear friend, I think only of her grace and her beauty. She taught me how to live each day with gratitude and hope, even in the face of absolute despair. I have never known anyone like her; she was a beacon of light in my darkest hours.

The last time I reached out to Gretta she was in the hospital. We texted a bit and then she sent me a gif of a beating heart. Two weeks later, she was gone.

Rest in peace, my beautiful friend. I will love you always and forever hold you close in my heart.

Not just a year

When he came down for breakfast yesterday, my son wrapped his arms around me and said, “I can’t believe it’s been a year.” It floated in and out of my consciousness all day, this anniversary, this date that will always be a little bit of a mystery to me. I don’t remember anything beyond the pre-op prep. The surgeons writing on me with markers, the anesthesiologist smiling down at me as I was wheeled into the operating room. It all seems like a long, long time ago. Not a year. Definitely not just a year.

I have been sitting this week with a lull in my workload, it feels indulgent after so many days of endless deadlines. I have been tempted to reach out to my editors, to seek more assignments, but I’ve been happy too, to have the time and the space to reflect, to plan, to think about some short-term goals.

I taught myself to knit by watching instructional videos online. I’m still not quite fluent in the purl stitch, but I’m getting close. One of James’s cousins offered to give me all her knitting supplies, she boxed them up when arthritis forced her to stop. When I knit, my hands go numb, I lose the feeling in my fingers, but sometimes I can stretch and move in a different way and it comes back. This seems like a small thing to carry, in light of how big, how invasive my surgery was. I am still surprised by how far I’ve come in a year, but also by how many things linger. When I sneeze, I have to hold my chest. If I don’t, the movement feels as though I’m being pulled apart from the inside. At the gym yesterday, I held a modified plank for 30 seconds, and then I did it a second time — this is something I was sure I would never be able to do again.

There were things my PT told me, cautionary tales, as she worked through the list of exercises I should avoid. But I’ve been thinking, why put limits on it? Why should I accept that I’ll never do push ups, never bear weight on my upper body, never have full range of movement in my arms? I think I might get there. I’m not there yet, but why not believe it’s possible, rather than accept that it’s not?

I don’t know what my life looks like going forward, I don’t know how to get to the place where I want to be. My focus has shifted. I live with the flickering flame of fear. Sometimes, even, I can see the cancer coming back; I’m not sure that doubt will ever be erased. But today I am one year and one day beyond a double mastectomy and reconstruction. One year and one day post a 12-hour surgery. One year and one day into a fresh start.

This morning when my son came down to breakfast, it was just another day. No hugs. No reminders. But deep inside my heart there is more. Always more. Every day is a chance to start again, to log the minutes and the hours, to try harder, dream bigger and live better. I am a walking cliche.

Because today is the first day of the rest of my life.

 

All that is bittersweet

Yesterday I “graduated” from the breast cancer recovery program at Full Circle Physical Therapy. It was a bittersweet moment. I am relieved to know I am well enough and strong enough to be discharged, but also sad to be losing the wonderful community and support of my therapists. I have also been taking a pilates class designed specifically for breast cancer patients, and last night I realized that I only have two of those sessions left. This, too, makes me a little sad.

Because I don’t want to lose any of the strength, flexibility, and stamina I have worked so hard for in the last three months, I signed back up with my local gym. I wasn’t sure how I’d feel about going back there, but I went on Friday and again this morning, and it feels right. I know I absolutely have to keep moving. All my doctors stress the importance of exercise to keep my bones and joints healthy, and to counteract the side effects of the drugs I am on.

Tomorrow I have one last (I hope!!) little procedure to finalize, or put the finishing touches, on my reconstruction. After months of agonizing over whether or not to go through with it, I have finally decided to get my nipples tattooed. It’s so weird. I’m one part ambivalent, one part nervous, and one part totally freaked out by the idea of it. I think ultimately I will be glad I went through with it, but right now, in the moment, I have no idea what to think and my emotions feel very fragile. As real as my breasts will look when everything heals, they aren’t real and that can never be changed or masked by surgeries and cosmetic procedures.

My cousin is still in the hospital recovering from her stroke. I know she will have a long road ahead, and while the last few days have been marked by a series of forward and backward steps, I am hopeful that once she gets into rehab she will make some significant progress. I know she must be exhausted and frustrated and if she could talk to me and tell me what’s in her heart, I have a feeling she would simply say she is tired. We both worked so hard after our surgeries to get out from under the pain and the physical limitations and the emotional fallout of this stupid cancer. To suffer this setback is unimaginable to me, and I feel angry and scared and at times overwhelmed by what she will have to rise above.

I am still struggling to accept the things I can’t change. It’s a life’s work, isn’t it?

Tipping point

I have this theory that the world is continually spinning away from its tipping point. Either that, or there is some strange cosmic balancing act in play, the kind of thing you have to look very closely to see. Some might say it is the hand of God, moving from one moment to the next, I tend to think of it as something less holy than that, something more man-made, though not exactly within man’s control.

I’ve been in a good place — physically, emotionally — since my trip to Denver. I’ve been relaxed, happy, looking forward to the holidays. I have accepted every invitation and attended every party I’ve been invited to. I am, more so this year than any other in recent memory, living in the moment, enjoying my family and friends, working to be present, to honor the second life I’ve been given.

And yet, within these moments, there are lingering feelings of something a little dark, a worry that things could change again — without warning, without cause. I guess that’s part of the balancing act. Holding back that small, smoldering flame of fear.

As much as I come here to sort out my thoughts, there are things I haven’t shared. Stories I haven’t felt are mine to tell. One of those stories runs parallel to my own. Someone I love very much, someone who means the world to me, was diagnosed with breast cancer just a couple weeks before I was diagnosed. Our surgeries were February 10th in New York (mine) and February 11th in LA (hers). We recovered side by side, 3,000 miles apart. On Thursday, she had a stroke. Her doctors think the stroke may have been directly tied to the drug tamoxifen.

I’m not even sure what to say about that. I know there is a family history of strokes, so that could have been a factor. I don’t think anyone will ever be able to say for sure exactly what happened. I know millions of women take tamoxifen without a problem. But in this odd parallel universe, tamoxifen proved not to be the drug for us. For very different reasons, with very different outcomes.

The thing that sticks with me the most is the fact that “recovery” is a never-ending process. There are setbacks all along the way — emotionally, and physically. And it is incredibly difficult to hold back the fear. And so I have two choices: I can live my life with that pervasive worry hanging over me, or I can just embrace the life I have. People, I am working so hard to embrace the life I have. But don’t for one minute think that means I’m okay.

Because I’m pretty sure I will never be okay again.

 

Update

I got the call from my doctor this morning: The CT scan is clear. Nothing to worry about. The mass they saw on the chest X-ray is an azygos fissure, a normal anatomical anomaly. Whatever that means. I would google it, but I kind of want to put this whole thing behind me — especially now that my cough is finally getting better.

I imagine it’s going to be like this for a while. When I don’t just bounce back from an illness, they’ll want to check and double check. I think the best plan is to just not get sick, don’t you? Stupid cough.

I have my doubts

I had the strange experience the other day of accessing my primary care doctor’s patient portal online. I kind of love these portals because it’s access to your own little world in a nutshell. But it’s also a little weird. I remember back in January getting an email telling me how to set up access, but with everything that was going on at the time, I never followed through. When I set up my account, I was surprised to find that I could click on all sorts of information, including the notes sent to my GP by most of the specialists I’ve seen in the last year.

Here’s the weird part: As I read through the notes sent to her by my oncologist, I was kind of shocked to see that he defined me as a “former smoker” (not true) and had my occupation listed as “auditor and accountant.” Another note from my previous oncologist makes reference to my sister having a history of breast cancer (again, not true). I know I shouldn’t get hung up on this stuff, but it kind of bugs me.

I accessed the portal because I went for a chest x-ray on Monday and I was hoping the results would be posted. They weren’t. But I did finally hear from my doctor last night. The good news is that I don’t have pneumonia. The not so good news is that they “see something” on the x-ray that looks like a small mass. Dr. M, my GP, was quick to say that it is most likely tied to my surgery. Possibly scar tissue. But she also said I have to follow up, and that means a CT scan. Dr. M is going to speak with my breast surgeon today to try to get a better understanding of the scans and x-rays I had before my surgery, but in the end, I’m sure they will both err on the side of caution.

In my logical brain, I know I have nothing to worry about. But in my fucked up brain, I’m sure the cancer has come back.

By the way, I may not have pneumonia, but I’m still coughing.

There’s no TGIF in Friday afternoon

Friday afternoon we got a call from a friend who had just heard some unsettling news from radiology. Her mammogram was suspicious, there was a lump. The only thing they know for sure is that the lump is not a cyst. But this is not the part of the story I want to focus on. The part I want to focus on is Friday afternoon.

Really? What is it with these doctors and labs? Why do they think it’s okay to give a woman news like this, news that a biopsy needs to be scheduled, news that is at best disturbing and at worst simply terrifying on a Friday afternoon? You might remember my Friday afternoon story. It was the post that started this blog, the first one I wrote about my diagnosis. I will never forget the fear or the anger I felt. Certainly, it could have waited until Monday, until I had access to my doctor and more information and the ability to move through a checklist of next steps.

When we are given news like this, we think that time is of the essence. It’s how our brains work. So having an entire weekend stand between us and any kind of medical care or action is unbearable. But cancer isn’t like a heart attack or a stroke. Its timeline operates on a different schedule. I got my diagnosis on Friday, December 5, 2014. My surgery wasn’t until February. My cancer was invasive, but it wasn’t a forest fire.

But that was my story.

I don’t know what our friend’s story will be. It is still unwritten. I’m really not one to pray, so I told our friend this: I feel your pain, your anxiety, your fear. And I will send as much good energy as I possibly can out into the universe and up to the heavens for you this weekend. Because right now, if I could change one thing about the way doctors deliver bad news, I would call for an end to Friday afternoon.

It’s just unnecessarily cruel.

Not so pretty in pink

So it’s breast cancer awareness month, or Pinktober, if you will. I hate awareness campaigns. I really do. I’m not sure what the point is. This October has been particularly unsettling. There have been so many articles, so many links shared via social media, about the pros and cons and timing of mammograms, the “over-diagnosis and treatment” of breast cancer (particularly as it relates to DCIS), and the reality of survival rates.

I shared one of these stories, a piece that ran in Mother Jones, on my FB feed. You can find the story here. It’s sobering. Well-reported, well-written, it really makes you wonder. And while I’m sure part of the intent is to make us angry, the truth is, it only made me sad.

When I was first given my diagnosis, my primary care doctor told me that my cancer was DCIS, which for lack of a better definition is kind of a “good” cancer to have. (In fact, new thinking questions whether DCIS should even be called cancer.) It’s non-invasive, it hasn’t spread, and it responds beautifully to treatment. But after all the follow up testing, I learned that only some of my cancer was DCIS. The truth is, my cancer was kind of three things in one. A mix of invasive ductal carcinoma (or IDC), DCIS and ADH. DCIS and ADH are not scary. ADH is, in fact, pre-cancerous cells. DCIS is curable and has an excellent (nearly 100%) survival rate. But it was the invasive ductal carcinoma, poorly differentiated, which dictated my treatment plan. That and the fact that my cancer was found in at least three locations in my left breast. That said, I have been one of the lucky ones. My cancer was ER+, which means it can be treated post-surgically with anti-hormone therapy, and — even luckier — genetic testing of my tumors revealed that chemo would not improve my longterm survival odds.

So that’s me. I have no doubt that I chose the right treatment plan, that a double mastectomy and anti-hormone therapy were/are my best shot at survival. But good grief, the information out there now, the stories blasting the medical profession for aggressively treating cancers that may never become life-threatening… It upsets me. I have friends who were diagnosed with DCIS and opted for lumpectomies and radiation, or even mastectomies. I wonder what they are going through right now? Do they feel mislead? Are they angry?

Added to all this is my general distrust of the whole “awareness” mentality, my inability to find support from things as stupid as “National No Bra Day,” and pink ribbons on bottles of soda. The amount of “fun” activities and events to raise awareness of breast cancer is at an all-time high. But what exactly are these things making me aware of? When’s the last time you saw the real face of breast cancer? What I see when I type those words is my beautiful cousin Tina’s face, just a few weeks before she died at 48 years old, swollen and unrecognizable from the toxicity of the drugs that couldn’t save her. I see my own scars, my body forever altered and changed.

We are so schooled in awareness that we’ve lost sight of what really matters. The media feeds us survivor stories where the underlying and unwritten message is: see how great all these happy women with breast cancer are doing!! They’ve thrown their bras away!! They are wearing pink!! Look at those smiles!!

Cancer treatments, particularly those for breast cancer, have come so far in recent years, but not far enough. While doctors know so much more about how breast cancers behave, how their genetic makeup can dictate treatment options, there is still a great deal of confusion and misinformation out there. We can’t lose sight of that. There’s nothing about this diagnosis that is a gift you can tie up with a pink ribbon. To have breast cancer is to be forever changed, sometimes in ways that can’t be explained or defined, or even shared with those we love.

This morning I sat in the exam room at my oncologist’s office thinking a great big “what the hell” about all of it. I mean, I had breast cancer. Just saying or writing those words still fills me with dread. And despite what my well-meaning primary care doctor said all those months ago — most likely in an effort to reassure me — there is no such thing as “the good kind” of cancer. You live with the fear, you live with the disease, you live with the aftermath. And it’s messy — all of it.

One of the real problems with awareness campaigns is that we hop on the bandwagon for a set amount of time and we think we’ve done our part. We feel good, we donate, we volunteer, but it’s all so damn whitewashed. I’m not sure what the answer is, but I know we have a long way to go. We have to provide more and better support for survivors, and we have to fund whatever research is needed to clear up the confusion about treatment options. Because do we really want to make women feel bad about their choices? Do we really want to tell someone that maybe she didn’t need that surgery after all? We have to do better than that.

We’ve come so far. But we really have such a long way to go. Maybe that’s really what Pinktober is all about — or at least what it’s supposed to be about.

 

First I have to grieve

I’ve been thinking a lot recently about the things cancer takes away; the things they kind of tell you, but not very clearly or directly or in any way that enables you to prepare. It was almost a year ago when I had my mammogram, the one that led to a call back for more images of the left breast, and finally in early December a diagnosis of invasive breast cancer. All that to say it’s been nearly a year since my journey here began.

I’ve lost a lot in the last year. My breasts — yes — but also other things that are harder to see or measure or quantify in any way. I’ve lost my health. Or the illusion of my health. I will from this day forward continue to wonder if every ache/pain, cough, lump, or headache is in some way something more sinister. I know my cancer is gone, that I have no signs of disease, but I will never again feel safe or immune or free from the worry of recurrance. And I know there are those who do not understand that. Or who will understand, but urge me to let it go, to be grateful that I am alive. I can only say it’s so much more complicated than that.

I’ve lost too a great deal of strength and stamina. Between my surgeries and my recoveries and now my drug regimen and its side effects, I find it hard to commit to exercise, though I know that alone could easily define the difference between feeling better or feeling worse. I have not even come close to regaining my pre-surgery level of fitness. I am no longer strong, and my left arm is a tangle of knots and cords and scar tissue that prohibits my full range of motion. To say that I used to run/walk 3-4 miles a couple times a week and do cardio and strength-training means nothing, to say that I used to do anything means nothing. What was is behind me now. I know I need to find the path forward.

In some ways too little is made of recovery, of the emotional fallout that can overshadow even the most daunting physical challenges. We are expected to bounce back and be strong. To fight this thing, to overcome. To reclaim our lives. But nothing is the same. I don’t know what the answer is, I don’t know how to ask for what I need because I have no clue what that is.

It kind of boils down to this: I am grieving. I feel a tremendous sense of loss. But I am stuck in an endless loop of anger and sadness and shock. I still can’t believe this happened to me. I look in the mirror and I no longer recognize myself. There has been a profound physical change. My body is scarred. And, there’s no sense talking about all the ways in which my body is better now, post-surgery. Well, okay. It’s currently a cancer-free zone, but even in this better state, this cancer-less state, I feel a tremendous disconnect. I am haunted by phantom pain and the pinging of nerves trying to regenerate, and the ceaseless pulling and tugging of scar tissue. Clothes are uncomfortable, I still can’t tolerate the feeling of a waistband or pants with a zipper.

I know I’ll get past all this, but I can’t help but wonder why it isn’t openly discussed. Why doesn’t anyone pull you aside and say good lord this is going to suck for a very long time. Instead, we are bombarded by language that is supposed to make us feel better. We tell ourselves and each other that everything is fine, even though it isn’t always true. Saying I am fine shuts down the conversation, it closes the door on expressing worry or fear. And it prevents anyone from getting too close. But I know it is the thing people want to hear. They tell me I’ll be fine, and I agree. Because saying anything more is too hard, too scary, too incredibly complicated.

In the absence of a timeline, I really don’t know how long it will take me to find my way. I want to protect my family, my friends, from that ridiculous loop of anger and sadness. I really want to be fine. So I say it.

I only wish I didn’t have to.