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.

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.  

Updates

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.

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.

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.