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 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.

In Treatment

They finally just hooked up the last drug in my "cocktail." I have been here since 11:15, it is now almost 4.

Today is a long day.

I get all three drugs that make up my treatment, plus an anti-nausea drug, a steroid that is wholly responsible for the fact that I have not lost one single pound since this diagnosis. That is right, I am blaming the steroid, not the oreos, not the copious amounts of pretzel thins and never my good friend peanut M&Ms.

As much as I would rather be anywhere else than sitting in this chair, I have to admit there is a community here. I am getting to know the nurses, I am loving my social worker and fellow working mom, I am recognizing more patients, becoming comfortable in an environment I never wanted to be welcomed in.

I still sit in the second room, the smaller room, with less people and a bit more privacy. I am not interested in watching News 12 or Family Feud on the shared TV. But there is another thing, something that I never expected. I look forward to coming here.

At first I thought maybe it was because I didn't have to go to work. I will admit that might be part of it, but then it became more. An uninterrupted 2-4 hours where I can concentrate on myself, actually rest, read. Oh my god, I am reading again. Real books with chapters. Not one princess or Strawberry Shortcake in the mix.

I am spending actual quality time with my best friend. The only way we have to sit and chat without worrying about six kids is in the chemo chair.

I also come because it is the one thing that I can really do to make me better. I look forward to the needle in the port, the metallic taste of the meds in the back of my throat, the cocktail dripping in my veins. It is me being active even though I am just sitting here, draped in the fleece blanket made by a friend, wearing a knit hat sent by another. Waiting for it to work.

Betrayed by the Boobs

So maybe my first post was a little salty, a little angry, a little aggressive. But guess what else is aggressive and advanced? This insidious cancer that has made its way into my breast and spread itself to my hip.

I am angry. I am angry that I didn't care enough about me to go to the doctor a month or two earlier. Would it have made a difference, who knows? But I will tell you one thing any amount of time that takes off my life, that this keeps me from watching my kids grow up is too much so I will try to turn that anger against me and the cancer around and try to make sure that it turns into action. I will fight as hard as I can as long as I can and for the results that will enable me to have the life I deserve and will enable me to watch my kids grow into their teen years and beyond.

I want to say that even though my body has birthed three kids, even though it is carrying probably an extra 15-20 lbs. and the boobs aren't quite where they used to be, they are one of my better features. To have them be the cause of such anguish when they have been the cause of such pleasure to others is sad.

When I first got the cancer diagnosis and we sat down with the surgeon, we were going on the fact that the cancer was localized to my breast and at least one lymph node. When the surgeon showed my husband and I photos of a 75-year-old woman's saggy breasts (for sizing reasons only) and promised me that not only the cancer would be removed but I would get a breast reduction and lift, I saw that as a silver lining. It would be like junior year in high school. Perky breasts, perhaps the treatment would shave off a few pounds, who knows maybe we would whip out the medical marijuana. Oh junior year. . . .

 Yes, the treatment wouldn't be easy, I would go bald, I would still have to fight. But it seemed like it was something "fixable" something that would be a bump on the road and I could move past it, move beyond it and move on.

Then we found out the cancer had spread. Surgery is not an option at this point. They are treating the entire body and are hoping that the cancer will just melt away. All of a sudden it was no longer "fixable" it was treatable but it is something that I will have to deal with for the rest of my life. Stage 4 cancer doesn't have that long of a shelf life and to have to say that out loud is heartbreaking.

The doctors are positive, they feel like this can be treated like a chronic condition, but there will always be a follow-up, a new scan, and fear, always fear. There will always be the what if it comes back? and there will always be the chance that the treatment won't work. It is scary as shit.

We got a second opinion, we got a ton of tests and scans. I wouldn't recommend a bone biopsy, it hurts like hell. Any ultrasound should only have a baby on the other side and the fact that they only told me after I showed up for the PET scan that I should avoid touching or holding my children close to me for 24 hours because of possible radiation contamination is beyond frightening. But I did it all and I will continue to do it all until this cancer goes away, melts away, and even though it is probably microscopically elsewhere in my body, I am hoping that the treatments do their job.

So do I feel betrayed by my boobs? You bet. For a year they nourished QT, they fed my Ladies and helped them grow. Now, I am just hoping that they will return to their sad, saggy state, cancer free and in it for the long haul.