Survivor’s Guilt

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This morning I had my survivorship appointment at the cancer center. This is a next step in my cancer journey–addressing what I need physically and mentally after treatment.

One of the things that I’ve come to realize is most overlooked/not talked about when it comes to cancer is what happens to a person after they complete treatment. When you’re in the throes of the battle, as strange as it sounds, things are almost easier in a way. You have a focus, you have a plan, and you’re really sort of forced to take things one day at a time–handling that day’s treatment, side effects, etc. There’s a routine of appointments, blood draws, check in, check out.

But then everything sort of stops. Appointments taper from weekly to monthly to every couple of months. Your arm stops feeling like a pin cushion (that I don’t mind so much). Your hair grows back (that I definitely don’t mind). Suddenly the routine changes, and you’re supposed to go back to your normal schedule.

Except, nothing feels normal anymore. Even as I go to work, take care of my son, carry on with my regular activities, things are no longer the same. There’s a new sense of fear, anxiety and even guilt.

I’m feeling the latter more acutely this week. On Sunday, Nina Riggs died of metastatic breast cancer. She was only 39. I’ve been following Nina’s story since last fall when her incredible essay about living with terminal cancer ran in The New York Times‘ Modern Love column. Nina’s story resonated with me in so many ways–as a breast cancer patient, as a mother of a young boy, as a wife, as a woman who lost her mother too soon. We had a lot of things in common–we even lived in the same city and had some mutual friends of friends. I wrote about Nina’s essay in this blog, and she was even kind enough to comment and send good wishes my way.

I’ve cried so much this past week for Nina and her family, her two boys in particular. Though I didn’t really know her, I got to know her through her writing and I could empathize with many of the things she experienced during her fight with cancer. I know how hard it was for her as a mom to know she’d have to leave those boys. My heart aches for her in that regard, and for them as  children who lost their mother too soon.

Even more bittersweet is the fact that Nina has a memoir called The Bright Hour coming out in June, chronicling her experience living with metastatic breast cancer. She wasn’t able to live to see its official release. But I hope it will allow more people to not only get to know her great talent, but also shine a light on a type of cancer that is generally kept in the shadows. Nobody wants to talk about metastatic breast cancer because it’s usually not a happy story to tell. But the fact is there are thousands of women and men who face and live with this diagnosis every year. And their stories are important, and I’m glad at least one of them is going to be told in such a public way.

As I wrapped up my appointment this morning, the NP I met with gave me a hug and congratulated me on reaching this point. I know I should be feeling celebratory–and I do in a way–but it’s hard to totally let my guard down and enjoy this moment. It’s a process, and I have a lot of work to go, and I plan on seeking some help to get there. In the meantime, I’m just focusing on feeling grateful. I know how fortunate I am to be where I am, and that’s enough to get me through today.

 

Ultra-Sad

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Last month I started taking Tamoxifen, an estrogen blocker often prescribed to women with breast cancers that are estrogen receptors, like mine. This medication helps block the hormone from feeding cancer cells, and works to reduce recurrence.

As one would expect, though, any medication that tinkers with hormones can have some wonky side effects. I’d heard some horror stories–side effects so bad that the patients had to discontinue or find an alternative medication–but my side effects have been pretty minimal, thus far.

That said, I started noticing some mild pelvic pain a couple weeks ago. Nothing major, just a little pain/pressure, mostly when I was walking or active.

Old me would have just ignored it and moved on. New, paranoid cancer patient me lets very little go unchecked. Though inconsistent, the pain persisted for more than a week, so I called my OB-GYN’s office to let them know (per the instructions on my Tamoxifen patient leaflet).

Yesterday, I went in to have everything checked out.

Going to my OB-GYN office is kind of a sad experience for me nowadays. The place is teeming with women at various stages of pregnancy–the newly-pregnant, with their nervous significant others in tow; the second-trimester gals, all cute belly and glowy faces; and the almost-done ladies, bellies about to pop with that third-trimester look of being completely over feeling like a beached whale.

I’m done having children. I’d made that decision long before my cancer diagnosis. But I still can’t help feeling a pang of jealousy when I see these women. I loved being pregnant, and there are days that I would love to be pregnant again, but that’s not in the cards for me.

This visit only intensified those feelings. After my exam, my doctor sent me to the ultrasound room for a quick look-see just to be certain everything was kosher.

The last time I was in this part of the office, I was one of those pregnant women, excited to get a look at my unborn child. I absolutely loved getting ultrasounds. It was so cool to see my little guy moving around inside me. That blurry black-and-white screen was full of promise and excitement.

Not so much this time. As the tech went to work, I watched the screen nervously, this time hoping my womb and surrounding area were empty. She made a few measurements, and when I asked questions, she gave me some vague answers–standard protocol for ultrasounds. But sensing my terror, she reassured me when she was done that it looked good.

My OB seconded that opinion when we met in her office shortly thereafter, going so far as to say that my uterus and ovaries were “textbook perfect.” Too bad these model parts are where no one can see them!

I left the office with a sense of relief tinged with sadness. Though my decision to be one-and-done was already made, a part of me still mourns the end of this chapter of my life. And I’m angry about the no-turning-back finality that my cancer adds to that ending.

 

Smoke and Mirrors

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Searching “vintage magic” to find this image was super-fun. 

In the past month or so, I’ve gotten a lot of compliments. Some of them are on my hair (the chemo curls are coming on with a vengeance) or how healthy I look. But most of them go something like this:

“You are just so strong. There’s no way I could have managed all this.”

“You are holding up so well; I would be  a mess if this had happened to me.”

You get the picture. But the truth is not very inspiring.

Inside, I’m a complete mess. Truly. I just do a good job of hiding it.

This same thing happened 17 years ago when my mom died. I was so composed (at least publicly) throughout the months following her death that I actually had two friends take me aside to tell me they were worried I was in shock and on the verge of a breakdown or something. Little did they know I’d cried a river of tears almost every day, just behind closed doors.

My people are a stoic bunch. I’ve seen/heard my dad cry exactly four times (three after my mom’s death, the other after his beloved dog died). I don’t think I ever witnessed my grandmother shed a tear, despite burying her husband and two children, as well as several grandchildren. Tough as nails. But it’s not that we don’t feel these emotions–we just rarely express them publicly. (I’m sure this is a conversation to have with a therapist one day.)

The truth is, I still cry often. In the car. At night after everyone’s asleep. Holding my baby in my arms in the dark as he dozes off. Even sometimes after doctor’s appointments.

And if you could see my Google search history, well, you’d know what an overly-paranoid freak show I’ve become. I consult Dr. Google on a nearly daily basis. Every little pain or twinge could be something in my mind. I read symptom lists. I read message boards and blogs, looking for people who felt the same things I do but were OK. It’s totally unhealthy, yet I can’t stop.

So, yeah, I look like I’ve got it all together. But don’t be fooled–I’m still a mess inside.

 

 

 

 

 

 

 

How It All Began

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When I gave birth, one of the things that was really important to me was to take a few minutes of free time (precious stuff with a newborn) to write down my son’s birth story. I wanted to record how it happened not only for him, but for myself as well, before I forgot it.

When I first started this blog, I was so shell-shocked from my diagnosis and the ensuing whirlwind of doctor’s appointments and treatments that I sort of glossed over the full story of how it all happened. And like that birth story, I want to record how it all went down. Right now I feel like I’ll never forget it, but as I’ve learned, time tends to blur memories and things can get fuzzy enough to disappear completely from your mind.

I also wanted to write this post in the event that some newly-diagnosed person or person with a suspicious lump happens upon this blog in their internet searching (I know I ended up reading a lot of blogs that way). I was hungry for information, but even more so, hungry for the experiences of others. I wanted to hear the good and the bad–I wanted to be prepared either way–but mostly the good, as I was looking for some hope to go along with my cold, hard facts.

So, in that spirit, here is my cancer diagnosis story (it’s long–sorry):

I don’t remember the exact day I noticed the lump, but I remember being aware of it around June of 2016. I’d love to say I was one of those conscientious people who did regular self-exams, but that’s not true. I noticed it in part because I was still breast feeding and more aware of my breasts in general, but also because it was pretty prominent–a hard little lump along the outer side near my armpit.

I honestly thought it was some kind of clog associated with breast feeding, or maybe a cyst. I remember thinking it felt different, so I decided to go to my OB-GYN to get it checked out.

I finally got around to doing that the week after July 4th, and the PA who felt me up that day said she thought it was probably nothing, but sent me to the breast center just in case. I was still oddly calm and sure it would just be some kind of benign thing.

At the breast center, they brought me in for an ultrasound. I’d had several ultrasounds before when I was pregnant, and I loved them. Seeing my baby moving around inside my body was one of the most amazing things I’d ever experienced (even if I needed help seeing him sometimes–those ultrasounds aren’t the clearest things!).

This was far less fun. As I laid on my side, the radiologist pressed the ultrasound wand against the side of my breast, pointing to the image on the screen.

“So, here is the lump,” he explained in a very calm, even tone. “Notice how it has jagged edges. And these little white spots here are micro-calcifications.”

I nodded and didn’t say much. I had no clue what any of it meant. Had I done any research beforehand, I probably would have lost my shit right then and there. Jagged edges and micro-calcifications are both signs of cancer.

When he was finished, he told me it looked suspicious, and they wanted to do a mammogram and a biopsy. Amazingly, there was an opening for the biopsy that afternoon, but the nurse told me I had some time before that appointment, so I should go get something to eat.

Oh yeah, food. I’d completely forgotten about lunch. Of course, I had zero appetite, because the impending biopsy completely freaked me out. I stumbled out into the blazing sun and somehow made it to my car. And then I promptly collapsed into a sobbing mess.

I somehow pulled it together enough to drive to a convenience store and buy a Cheerwine (nothing comforts me like my favorite sugary drink), and then I called Rodney, crying, and told him everything.

I dried my tears, finished my soda and staggered in a daze back up to the breast center. The mammogram was first. Being only 37 with no family history of breast cancer, I’d never had one. And I’m here to tell you the rumors are true–they’re no fun.

After that, I was taken to a small examining room for the biopsy. Continuing the theme of the day, this also was zero fun. I laid on my side and got a shot of local anesthesia. It always takes more than one shot for me (so tough!), but once I was sufficiently numb, the radiologist went to work. I could feel the pressure of the needle going into my body, and then the pulling as the device clicked and sucked out bits of tissue from the tumor.

The biopsy was done in a few minutes, and they sent me on my merry way to wait for the results. Of course, it was my luck that this all went down not only on a Friday–meaning I’d have the whole weekend to agonize–but also the Friday before I was to fly to Chicago for a Monday business trip. I spent most of the weekend consulting Dr. Google, who all but confirmed my fears that this was no ordinary benign occurrence.

As you may have read in one of my first posts, I got the news while on a layover in the Atlanta airport. Yeah, that sucked.

I had my first appointment at the cancer center the following week. I’d had some long doctor’s appointments before, but nothing like the four-hour marathon that is the first cancer consultation. On the one hand, it’s nice that they could assemble my team (it never failed to freak me out that I needed a full team to treat me) at one time instead of making me return for half-a-dozen individual appointments. But on the other, such an appointment makes for a pretty grueling morning.

My oncologist was the first doctor to visit with me and Rodney. After introducing himself, he informed me that I had been the subject of a weekly meeting of the area’s breast cancer doctors. Knowing you need a team is one thing; finding out your case was the talk of all the doctors in the area? Absolutely fucking terrifying. I was sure I was about to die.

Turns out, I was of interest because of my age and relative good health. My oncologist went on to tell me my stage (Stage II A) based on the fact that my tumor was around 2.5 cm and had not spread to my lymph nodes (that they could tell). He also told me that it was estrogen- and progesterone-positive (which means those two hormones essentially feed the cancer) and that it was HER2-negative (a protein that can be over-expressed in tumors). The growth rate was at 50%–fairly high, but not “NASCAR speed,” as my oncologist put it.

After telling me all that, he outlined my treatment plan (which changed due to my BRCA2-positive status), and answered the litany of questions Rodney and I had. The rest of the appointment is kind of a blur to me now. I saw my surgeon, the radiation oncologist (whom I never ended up seeing for treatment), nurses, a dietitian, a physical therapist–like I said, it was kind of grueling.

It’s crazy to me to think that day was almost seven months ago. I’ve had chemo, surgery, several MRIs and more doctor’s appointments than I can count since then. I’ve lost my hair and grown it back (well, it’s in process). And best of all, I’ve had a clean pathology report. I’m still not finished with this journey, but man, I’ve come a long way from the beginning.