The Double Life

It's been a while.

I still have cancer.

I am still navigating what I can only describe as parallel lives.

There is me, mother, wife, full-time working woman, who is trying to find missing library books and make dentist appointments. Someone who is making plans for summer camp and beach weekends, making mental grocery lists and trying to pair missing socks. Someone who had a hard enough time trying to balance work and home before fitting in devastation.

Then there is me, breast cancer patient on week 20 of sitting in a chair, waiting, wondering, hoping. Someone who has given up on headcoverings and who barely wears a wig outside of work. Someone who makes green smoothies and keeps her talismans close at hand.

It is amazing how normal this has all become. How the weeks have moved forward and how much I have changed and how much I am very much the same.

You would think I would be sleeping less. That the worry would be so constant, so chronic that I could do nothing but sit wide-eyed in my bed at night and fret over all the what ifs and the things that I may miss. And while there are times that I am blindsided, hit so fiercely and furiously by the enormity of my diagnosis, I am also so exhausted by chemo and kids and correcting commas that there is no time left to pay it any mind.

So I live in both spaces, balancing precariously on the tightrope of each, trying to move on.

Updates

I realized that I never really update this blog with actual information about my treatment.

Today I have an off day. That means no chair, no meds, no time off from work. But it is also a nice little break. My body doesn't get beat up, I have a bit of time to recover and not feel so run down.

I will pretty much be getting weekly treatment until June. Sometimes it is one drug, sometimes it is two, every three weeks or so I usually get all three.

The chemo drug, Taxol, is the one that I feel the most side-effects from. It keeps me up at night, it makes my face flushed the next day,and it needs to be coupled with a steroid that makes me hungry. One girl (and I say girl because she is about 10 years younger than me) who is going through treatment told me that the Dr. said you can gain up to 25lbs. on Taxol. I am thinking about wiring shut my jaw. I am all for getting proper nutrition but I do not want to show up in swimsuit season with a crewcut and an extra 25 lbs. attached. The kids are really into getting in the water now and my husband refuses to step foot in the LI Sound, so it is pretty much me in there. Ugh.

The other two drugs that I am on are targeted for the HER2+ breast cancer. I will continue getting them both every three weeks after June for who knows how long. But I will continue to take them because they are part of the long-term treatment of this disease and because they seem to be working and I am all about things working.

I will say that there appears to be a bit of a silver lining on the hair front. I haven't actually gone full-on Daddy Warbucks bald. In fact, my hair seems to be growing back.

I went from the GI Jane phase and am transitioning from the butch lesbian/English soccer hooligan phase into the 13-year-old Asian boy stage right now. I asked the nurse if this was OK. I mean, one of the big side-effects of Taxol is hair loss and even though my hair was coming out in clumps maybe I was premature to shave it all down. Maybe I could have gone with a pixie cut? I am pretty sure I will never be described as "gamine" like the Hollywood starlets who have embraced the pixie hairdo but it would have been a little less dramatic than taking it all off.

I was worried that because the hair was growing back that it meant the drug wasn't working. The nurse assured me that it was just because of the way my body metabolizes the drug. I will take that as a bit of good news. Hopefully, once June hits I won't have to wear the wig anymore.

I know a lot of people want to know how I feel, and in all honesty, I feel OK. I do get tired. I hit a wall every day where I just feel like I have had enough and need my bed, but I am not knocked out completely. I still get up with the kids. I still occasionally vacuum. I still go to work every day and still make it to the grocery store. I am lacking in energy and it isn't always easy, but I see how far I have come already and I know that if I keep going I am going to make it through.

So for now I just move forward. I will go to treatment and keep hoping the drugs continue to work and I will try my hardest to keep you all updated.

On Giving Up

I gave up cancer for Lent.

I am pretty sure I can get some sort of special dispensation, but I decided to just let it go.

I am giving up the worry.

I am giving up the insomnia, the feeling of insurmountably, the burden of it all.

I am giving up the ache in my bones, the cracked nails and skin.

I am giving up the indignity of my body breaking down.

I am giving up the itchy wig, the scarves, the head coverings.

I am giving up feeling defined by it, feeling sorry for myself, feeling sorry and sad and stuck.

I am giving up just managing to get by.

I am giving it up, out to the universe to deal with and struggle with every day instead of me.

I won't give up the treatment. I will still sit in that chair every week while the meds pump through my veins, I will still do as much as I can to battle this disease but I won't be in some sort of holding pattern until treatment stops, until this all melts away. I will give up the weight of it, the heavy load, the unimaginable fear and I will live through it. I will live my life. I am pretty sure it will be easier than giving up chocolate. 

On Washing Wigs and Looking Good

On Washing Wigs

When washing a wig you should probably pay close attention to detail and maybe be focused on the task at hand. For example, when the instructions say fill the sink with cold water, drop in a capful of shampoo, agitate the hair for a minute or two and let soak for five minutes before rinsing off, you probably shouldn't leave the wig in there for let's say roughly 35 minutes while you try and get the kids to bed and find yourself sitting on the couch watching an episode of "Tattoo Nightmares" before rescuing your wig, which now looks like a wet piece of roadkill.

Looking Good

I should probably wear makeup. I am a firm believer in looking good/feeling good, but it is hard when you have three kids and cancer. Last week I did attend the Look Good Feel Better session offered at the Breast Center. I was actually excited to go. Not only would I be getting some freebies but the entire group would be made up of breast cancer patients.

I haven't been too social in the chemo room and I was interested to be among a group of women who were all battling the same thing.  It was a wide-range of ages and wig choices. There were some who felt that the homemade t-shirt head wrap with a piece of lace and small button might work for them and there were others who maybe thought that if you weren't choosing a turban as a fashion headpiece before you were diagnosed with cancer than maybe you might not be too keen on wearing one after.

Anyway, I got a bag full of goodies. The woman who ran it was very adamant about making sure that we not share any of these products with anyone else. I wasn't sure how long that was going to last in my house. In fact germs are pretty much everywhere. As I sat there listening to how to apply foundation I got a call from the Lady's school saying that she vomited. I guess going out to lunch with my newly applied makeup and taking a moment or two to pamper myself wasn't going to happen. I was just hoping that we wouldn't have a repeat performance of last year's stomach bug.

I was lucky enough to be sitting toward the front of the room so the woman was able to use me to demonstrate a few things. The problem with this was that she only did one eye or one cheek and I was left to my own devices to figure out how to get the other side to look somewhat close to her work. Did I mention in this bag was liquid eyeliner? Look, I think I might be able to handle regular pencil liner but liquid eyeliner? You need a steady hand and perhaps a background in 80's hair bands. To say that my application was shaky would be an understatement.

When the makeup portion was done I had a full face on. Eyes, lips, cheeks you name it. Then the woman from the salon where I got my wig did a small presentation. She reminded us all to wash our wigs, "just agitate it for a minute or two before rinsing it off."

Um.

The good thing was that she was able to show me a trick or two on how to part this wig so it gave me a few options and didn't make me feel so insecure about wearing it.

With that I was off to tend to the Lady who was feeling much better after her little puking incident and who was very interested in the contents of my new makeup bag. Since I knew I wouldn't get away without sharing any of the contents with the Ladies I let them have the liquid eyeliner, the lip gloss and the very neutral beige eyeshadow.

The Lady wasn't much better than her mother at applying liquid eyeliner. She ended up looking like the guy from A Clockwork Orange. And even after multiple attempts at me trying to remove said liquid eyeliner from beneath her lashes, I am pretty sure I sent her to school yesterday with a bit of it still on.

I am happy to report that the rest of the stuff is mine (and currently germ-free). Who knows maybe one day I will actually take the time to apply more than the moisturizer.

Results

Here's when you cry

In the car on the way home from work with the radio loud and the dark winter night as cover.

Here's when you cry

In the shower on a Sunday when you have five minutes to yourself and even though the kids keep popping in you know you can hide behind the curtain and camouflage your tears with the shower spray.

Here's when you cry

In bed at night after your husband's breathing has become low and slow and you think about what a great dad he is and pray that he never has to do it alone.

Here's when you cry

When you see your kids in your rear view mirror and realize you can't miss one minute of their life, not high school, or college or first grade.

Here's when you cry

In the hallway outside your office on an October afternoon when the surgeon who did your breast biopsy calls and says cancer, before you go back to your desk and work for the rest of the day.

Here's when you cry

In a small examining room mid-November when the doctor says the word metastatic.

Here's when you cry

In the passenger seat of your minivan, on a foggy January afternoon, clutching your husband's hand and a printout of your PET scan results that say words like "illiac" and "acetabulum" and "hypermetabolic" and even though you have to google the words you know what it also says is:

Findings consistent with a significant response to therapy
Significantly decreased activity in the right breast
Right axillary/subpectoral lymph nodes and osseous structures no longer appear hypermetabolic

It says it is working and those are tears of relief and the only thing you can do is cry.

On Healing Masses and Radioactivity

I made an early decision to try and keep myself open to any form of support be it meals, prayers, alternative medicines, talisman, voodoo charms or hand holding.

In my pocket I carry an angel of healing medal, I wear a cross with healing stones, I have three bottles of Lady of Lourdes water and a necklace, with what has become my mantra on it, which someone sent me with no card and a Canadian return address (it looks like it came from Etsy--if you sent it please let me know so I can thank you properly!).

So when my friend Andy called me and asked me if I wanted to go to a healing mass I said sure. I thought why not? I didn't know what to expect or what I would have to do but I thought I have faith, and there is something very powerful about saying I believe.

Andy drove up from Baltimore. He picked up my friend Dave in Hoboken and my girlfriend Lauren drove in from Brooklyn. We met for tapas and a nice glass of wine. We talked, we laughed, we got caught up.

If any of you knew the four of us in college you would know that we would be the last four people out of our group of friends who would be heading towards a church. There might have been a few times the four of us were in a van heading somewhere, but I guarantee you there were probably some unholy acts occurring as well.

But there we were navigating the Merritt Parkway on a cold New England night looking for a little hope, a little more faith and some healing.

Would it surprise any of you to know that when we got to the church it was pretty dark? There were only a couple of cars in the parking lot and about three other people inside. We sat, we waited, we giggled a little at the fact that we had come all this way and there was no priest to lead us. (Although in a totally unrelated aside, I guess no priest is better than the priest that married my brother and sister-in-law, who recently got arrested for selling meth to support not only his drug habit but his adult sex shop.) And finally we decided to go.

Priest or not priest though, there was some healing that night for me. There was the familiarity of being around old friends, of being able to be myself, of not having to focus so much on the cancer. I even stepped out with no wig. I thought I pulled it off okay.

I am grateful to my friends for making the effort, for being willing to explore every avenue out there, to give me the opportunity to find a way to help heal.

Radioactive

I am radioactive.

I am.

I have a note with my name on it that explains why a Geiger counter might go off in my presence.

I spent my morning in a mobile unit attached to the outside of a hospital getting injected with a radioactive dye and stuffed in a tube for twenty minutes.

The only thing I can say about it is please.

Please. Please.

Please show some shrinkage. Please show that this cancer hasn't spread that the meds are doing their job.

Please make the awkward chatting with the kind-of-off PET scan guy worth it.

Please give me something concrete and positive to hold on to, proof that all the days in the chemo chair are making a difference and that not being able to hug or hold my kids tonight is just a small price that I will have to pay, a few short hours in one short day in a long line of days to come.

Friends and Benefits

If you stumbled upon this page because you mistyped as you were Googling "friends with benefits," I am sorry to inform you that you have made your way to a cancer blog.

Having said that I will say that the JT/Mila Kunis movie by the same name was surprisingly much better than I thought, although I do prefer the Ryan Reynolds/Anna Faris classic "Just Friends" when it comes to movies about trying to navigate the tricky and often hilarious missteps of trying to date your best friend.

However, what this blog post is really about is saying thank you.

Thank you to every single one of you who showed up on Saturday and supported me and my family. I know that the draw of a day drink with an open bar might have been a bit of incentive, but please know that to walk into a room and see so many people that have played a role in my life and who were willing to show up and lend their support was unbelievably amazing.

Thank you.

Thank you to Marianne and Colette and Bourbon Street.

Thank you to college roommates and their moms and work friends and to those of you I had sixth period French with and those of you that at one point I might have french kissed. Thank you to my cousins and aunts and uncles, friends of friends who showed up and lent a hand. Thank you to old friends I haven't seen in too long and to those who have been by my side through it all.

In all honesty I wasn't even sure I was going to show up. The thought of walking into a room, what I dubbed the "Worst High School Reunion Ever," at 36, bald, with breast cancer was a little daunting.

But the one thing I am realizing through this entire, terrible, overwhelming, unbelievably life-altering process is that there are people who care and who just want to help. By showing up on Saturday, you lessened the burden a bit for me and for that I am incredibly grateful.