Tuesday, January 7, 2014

To a New Year

It's been over a year.

It's been over a year since diagnosis, since the fear and the confusion of last fall.

It has been a year since I shaved my head.

I am still standing. My hair is growing. I have two perky boobs thanks to the final reconstruction surgery that had to be moved up after two not so comfortable infections.

I feel more like myself, but the definition of me has changed.

Things seem good right now. I feel good. People tell me I look good, although I am totally rocking some sort of 70's mom hair with a flip in the back and some serious feathering on the side.

I have more energy and continue to do all those things I did over the past year, grocery shop, work, pick up at gymnastics. I have tried to think less about framing my life in the context of cancer and just enjoy the life going on around me but everything is just a little bit tainted because my timeline has changed.

I am trying to plan ahead without worry, without the anxiety that comes with the what if?

There have been bumps on this road. There have been scans and more scans, there have been tweaks to medication and treatments. There are side effects, minimal in the scheme of things, but enough to impact my days. There have been days that are entirely too dark that have left me at times feeling unsure and afraid.

There are also good days. Days where I play with the kids, laugh out loud, and days that seem so mundane and ordinary that I can almost forget. Almost.

So there is nothing left to do but live.

I am planning vacations for the summer. I am signing QT up for nursery school in the fall. I am believing with all my heart that this year will bring with it some changes that are a long time coming and that will enable me to live the life I've imagined with the people that I love for a very long time.

Friday, August 16, 2013

Surgery, Expanders, Boobs and Scans, Oh My!

This is how I have decided to live my life.

I have decided that I will not be defined by this cancer. I have decided to try and not spend one extra minute in my day dwelling on it, having it take control over what I do.

That of course, is easier said than done. How can you ignore that your life has been threatened? How can you move on past the “active” phase of treatment and back to the everyday minutia that takes up so much of life? How can you make those minutes matter? I ask those questions every day. It isn’t easy, but I am getting better about not framing my life in the context of cancer, but of trying to celebrate the good things without having to taint it with that ever present cloud.  


So, I got some surgery last month. The original plan was to do a lift on the left and a mastectomy and reconstruction on the right. Things didn’t quite work out that way. I know that I said I wouldn’t blog about my areolas again. It totally makes my husband uncomfortable, but the fact of the matter is, between the amount of space the surgeon needed to remove what was left of the tumor and the fact that my areolas were kind of big, the skin wasn’t thick enough and there wasn’t quite enough of it left to do the reconstruction at the same time.

I was disappointed. My husband told the plastic surgeon that he needed to be the one to tell me, I don't think my husband wanted the responsibility of it, he knew how it would be something I didn't want to hear. I have a very vague, drug-induced memory of the surgeon doing just that. He went on to tell my husband that I was pretty with it when he delivered the news. I remember nothing else about him talking to me or most of the remainder of that day except waking up two hours later, getting wheeled into a hospital room and the sweet, sweet, kindness of the painkillers.

Before the surgery I thought one night in the hospital would be enough. Two was definitely necessary and I knew it right away. I was so unsure of how I would feel afterwards and in all honesty it sucked. There are women out there who have had to go through worse (double mastectomies, removal of lymph nodes and muscle) none of it is easy. The surgical drains were the worst. They were super uncomfy and had to be emptied daily.

Can I say one thing here? My husband is amazing. I considered getting the visiting nurses to come in and do the drains as well as apply the nitroglycerin paste to what was left of my right boob in order to make sure the skin didn’t die, but he said he was fine with it. I never wanted him to see me sick. I never wanted him to have to take care of me at 37. It is one thing to see babies coming out of my body, but that was beautiful in its own crazy, sort of gross way, because they were something we created together, new lives that made us more than we were before.

Donning surgical gloves and smoothing cream over an area outlined in blue marker is another story and he will never know how grateful I am to him that he never once flinched and still seems to think that he made a good decision marrying me.

I do think he will be pleased once the right boob is good and grown.

It is weird to have one boob. I will say the one on the left looks amazing (a small C), that was the first conscious question I asked the plastic surgeon when he came in to check on me the next day.

I am also totally thankful to my amazing social worker who showed up the next morning with a camisole that had pillow inserts so that I would have something other than the bra I woke up from surgery in to wear and so that I wouldn’t be so lopsided.

Any of you who know me know that I have never, ever had to stuff a bra.

Anyway, instead of taking two weeks of disability from work it ended up being three. I am still not 100% back to doing all the everyday things that I am used to doing. I still probably shouldn’t pick up QT, but it is less because of the lifting and more because I am afraid he is going to bump a boob. Last week after I came back from the doctor, he said to me "your booboo better, you hold me now?" Tears.

The plastic surgeon left an expander with a port inside me after the surgery. I go every week to get pumped up. He inserts a little silicone and the expander fills slowly. After each visit, I take a little bit more stuffing out of my bra. In the next 4 or 5 weeks it will reach the point where it matches the left side and then we will schedule another surgery to replace the expander with a permanent implant. It will be a basic boob job at that point, an outpatient surgery that hopefully won’t have much of a recovery.

I wanted to have the reconstruction done at the same time as the mastectomy because I am tired of waiting to resume my life. I just want to move on. It is a setback, but it is minor and in the scheme of things, it isn’t that terrible.

I feel lucky that the tumor is out. I feel even more lucky that the last round of scans came back showing nothing left of it, and more importantly nothing new.

I am not cancer-free. Metastatic cancer doesn’t allow that.

What I am right now is cautiously optimistic, what I am doing is continuing to take my meds, going for my treatment every three weeks, growing a new boob, adjusting to life post-chemo, post-surgery, post-what do I do now?

For all of you who helped me during the recovery from this surgery, I am unbelievably grateful. Thank you for visiting me in the hospital. Thank you for coming over with couscous salad, button down shirts and climbing into bed with me to chat. Thank you for making meatballs and enduring a very sleepless sleep-over party. Thank you for the daily Dunkies delivery. Thank you for pjs and the Twizzlers. Thank you for taking the kids and making this difficult time for me an opportunity for them to go and do something new and exciting. Thank you for calling and sending cards. Thank you for being a friend of a friend who knows all too well what it is like to go through this surgery and sending me an email with post-surgery advice from women who have been there.

Thank you for simply showing up. Thank you for knowing me well enough that I probably was not going to ask for help so instead of simply offering an empty platitude you responded with action.

Also, thanks to my Loyola ladies for the lingerie gift card. When the new boob comes in, I am going shopping. A perky C-cup after three kids? Ahhh the marvels of modern medicine.

Tuesday, June 11, 2013

Scantastic Results and Surgery

I am done with chemo.

Six months, six cycles, side-effects.

It was a bit anti-climatic, especially since I still have to go every three weeks for the "maintenance" drugs, but I am happy to not have to deal with the exhaustion, the sleeplessness, the steroids.

I feel better.

My hair is growing back pretty quickly. I am going to have to actually go to a salon soon for some styling advice since it has transitioned to something that resembles a nun's haircut and is starting to grow in over my ears.

I started running again (I am slow).

I am taking Bikram yoga (it is hot).

I am making summer plans (please invite us over, especially if you have a pool).

I was rescanned in May. My third time. I now consider myself a bit of an expert on the art of the PET scan, I arrived with loose clothing, no metal, I removed my earrings, and my wedding rings. The technician couldn't find a vein, he asked me the awkwardly uncomfortable question of what I was doing there, my shoulders cramped in the long narrow tube. I wanted so badly for these results to reflect what I have hoped so much for since that cold October day. That the treatment worked. That the cancer is gone.

And the news is good. There is nothing left in the hip. They see nothing anywhere else but there is still something left in the breast.

I got another mammo, another ultrasound. I got a call from the doctor and we are going to do surgery.

He said the best way to totally remove the remaining cancer from my body is to cut it out. So that is what I am going to do.

I had to wrap my head around it. In the beginning before we knew anything, before things were so aggressive, so advanced, surgery was an option, then it wasn't. I have to admit I was a little jealous of those other women in the treatment room, women who had options, who for them surgery would be just the fix they needed to put this all behind them and move on.Women who would worry if and not when.

I also have to admit that I never really entertained the idea of a mastectomy. When we first talked surgery it was going to be a lumpectomy, remove what was left, throw in an implant and move on.

Let me assure you that there is nothing that I won't do to ensure my chances of a longer survival. Breasts are great, my breasts are great, but they aren't working for me the way they should. So we are removing one, putting in an implant, and much to my delight giving me a bit of a lift on the other side.

I am lucky that both the surgeon and the plastic surgeon can do the procedures at the same time. One surgery is better than two. The reconstruction will happen right after the removal and that makes things easier for me in terms of recovery.

The plastic surgeon kept on telling me that we were going to have to make the boobs smaller. I kept on assuring him that this wasn't an issue. I mean I breastfed three kids, gravity isn't kind.

So that is where we are. I will go in for surgery in a few weeks, continue to go for monthly treatments, readjust to life post-chemo, and hope days turn into weeks and then years and years and years.

Tuesday, April 9, 2013

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.

Wednesday, February 20, 2013


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.

Tuesday, February 19, 2013

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. 

Tuesday, February 5, 2013

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."


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.