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.

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.

Gettin' Wiggy Wit It

Obviously the hair came off. I will not say that having a cancer conversation with a 5 and 3-year-old was easy. Both of the girls processed the news in their own way. The hair thing to them, like me, was the pressing issue.

I will say we talked, we read, we cried, we hugged, we shaved. All of us.

I sat in the bathroom on a stool and the girls each took a turn taking some off. I would like to thank my husband for his attention to detail and his steady hand. In hindsight we probably should have done a Mohawk for a little bit, but since I am hoping to never, ever have to shave my head again, I will not consider it a regret.

I will also say that I didn't look in the mirror. Not at first. I showered and saw the outline of my head reflected back in a steam-covered mirror. I caught a glimpse of myself in a reflection off of the window, but I didn't own up to it, confront it or embrace it until hours later when I finally looked.

And then I thought. . . It's been seven hours and fifteen days. . . Look, I am not going to rip up any pictures of the pope, but it is very Sinead circa 1990, and until the rest of the hair falls out I am going to try and own it.

The wig is itchy, but I told the girls that I would wear it when we are out in public. I also said that when I was home that it would probably come off. There is a time in every day when my rings come off, my bra comes off, and that my friends, is when the wig comes off.

I did wear the wig to my sister's that same day. All of a sudden you realize that it isn't just your own kids who have to be prepared. It is nieces and nephews, cousins and friends. I could tell that my sister had prepped the Wild Woman for my arrival. When we walked in the door I could see her looking at me and trying to process it. She then said, "I like, I like, I like you."

I like you too Wild Woman.

Here is a picture of me in the salon when I picked up the wig. Note how perfectly it is parted. Let me just say that I have never been able to recreate the top part and that just like when I had real hair, I am barely even brushing this thing. I feel very suburban mom in this thing. Not that I am not a suburban mom, but it seems very styled to me. Although, I do love the color. This photo doesn't do the nice warm highlights justice.

For those of you who thought we should go hot pink. Here is a pic of me and the Lady in our hot pink wigs sent to us with special care from my cousin in Chicago. Val, the Ladies couldn't have been happier! Will post a family pic of all of us in the wigs, please note that my husband's noggin is too large but I am sure we will figure something out.

Here is a pic of QT in my wig. We shaved my head when he was napping and when he woke up to my bald head he didn't even bat an eye.

New Year! New You!

On Shrinking and Shedding

On Shrinking

As my friend Mike told me yesterday in response to a text, shrinking and boob should never be used in the same sentence, unless of course it is to say that the tumor inside my boob seems to be shrinking, which I am happy to report seems to be the case.

Since I started treatment five weeks ago, I have been able to tell a difference in the size of the tumor in my breast. I pretty much feel myself up like a 100 times a day to try and determine if there has been any change. What used to hurt, doesn't so much anymore. What used to be very visible has receded. However, this is just me going on what I feel and what I see.

When I met with the doctor on Wednesday he too was able to feel a difference. I felt pretty good about the fact that he took out his little measuring tape and didn't even end up using it. He did frequently apologize to me about "mashing" my boob, but I assured him that he could continue to mash away if it meant that he was going to tell me that the tumor was shrinking.

As an aside, I totally went topless in front of this guy with no worries. Usually, they throw a blue paper robe at you and leave the room. I have zero modesty left when it comes to the boobs. I have whipped them out in various places over the last five years including, but not limited to, a confessional in church, the beach, planes, and a carnival. I was like, "dude you are going to see them in 30 seconds, totally exposed anyway, why don't you just stand there and pretend you are 'covering me up' with the paper blue robe, while I take my top off for you."

Anyway, hopefully the shrinkage has made its way to my hip, which I am also happy to report doesn't ache with the same consistency that it has in the past few weeks. We will follow up with a PET scan in the next month or so to see. Oh chemo and your toxic blend of chemicals coursing through my body, please work, please work, please work.

On Shedding

My hair is falling out. It is everywhere. One of the first things I did was go out and get a wig. Even though I paid extra for two day shipping over a month ago because I wanted to be prepared for the inevitable, my hair really just started falling out last week. First it was just a few strands, now it is pretty much clumps of hair every time I touch it.

Good thing I have a lot of hair. I can tell that it is thinning but there aren't large bald areas yet that are noticeable. I stopped shaving my legs a few weeks ago because I thought that the hair would just all come out. After a few days I realized that it wasn't happening and that I really should probably still try to maintain some sort of hair removal on my body.

The hair on my head however, has started to get everywhere in the house. I find it on the kids, in my bed, it is all over the floor and I am not sure the vacuum can handle it anymore. It is time to come off. All of it.

What that means though, is that we have to tell the Ladies. Up until now there has been no real physical signs of this cancer. We have tried to keep everything as consistent and structured for them as we can. I just don't want to introduce this into their lives. There is no avoiding a shaved head, there will be no avoiding a bald one. There is no avoiding the reality of this situation.

We have resources, books, places to turn if they have questions and concerns. But we are going to be honest. We will use the word. Cancer, like Voldemort will be spoken in our house if only to take a bit of the power and the fear away from it. We will not whisper it or call it the c-word (I usually refer to another word by that title, if you are unsure of what it is just check out my first post on this blog). We will be honest, as direct as possible and probably sobbing messes by the end.

I just hope the Ladies like my wig and that my husband has a steady hand with the trimmers.