The Face of Cancer

We heard about an exhibit that a photographer had done, called the Beautiful Faces of Cancer. It's a great concept, and indeed, there are beautiful faces. However, while last time I went through this, cancer had a smell, this time it has a face. Come to think of it, it's actually the smell and the face of chemo...

Losing my hair was pretty bad. It had grown, it was long, I liked it, and I liked how it looked on me. Then it started to fall out. Traumatic, certainly. I still struggle with what the heck to put on my head on any given day if I have to go out into the world, and while I've made my peace with not wearing the wig to work, I still struggle if I have to go outside the office. If only I could hibernate for the next 7 weeks. But, that isn't going to happen.

The thing is, the more time passed, I realized it wasn't my hair as much as my face. This cancer has really taken a toll on my face. People say I have such a great head shape, and a nice face for baldness (isn't that ridiculous, to begin with?) but the thing is, I look in the mirror on a daily basis and most of the time don't even recognize the person looking back at me. Indeed, cancer has a face.

Sometimes I stare at that face, and at each of its parts separately. I see glassy eyes, sometimes red, constantly filling with Taxotere-induced tears that run down my face throughout the day. The whites aren't white anymore most of the time, and if I lean in closely, I can see the muscles twitching. I see the darkening around those eyes, particularly when I get out of the shower, for some reason. Maybe it's the hot water that brings out the pigmentation, but the dark rings are immense. I can't remember what color my eyelid used to be, and the darkness sweeps around to the corner of my eye and over the front of my cheek, creating the appearance of bags under my eyes, even when they are not swollen. That's not to say the bags aren't there anyhow...

There's the left eye, with it's one eyelash on the bottom and half a lid of lashes on the top - and the right eye, with nearly a full lid of lashes on the top and the ones on the bottom rapidly thinning. And the nose. The nose in and of itself isn't bad, but the tearing causes it to run, and the running causes it to become dry around the nostrils, and the running and the dryness causes nosebleeds on occasion when I blow too hard... non-discriminate of time or place of course. If you look closely you can often see a bit of dried blood around at least one nostril. Or perhaps I'm spending too much time looking up my nose in the rear view mirror when I drive. My mouth has held up reasonably well, save for the slight cracking of one side, potentially due to the cold. It's starting to darken a bit at the corners of my bottom lip, but I have a feeling that is only perceptible to me. One can only hope.

All I can do is stare sometimes, in amazement, at this strange face staring back at me. I can't look away from the eyes sometimes, as I search for what is behind the face I see in the mirror. And the ritual begins. The concealer, dotted below the eye, above the eye, on the eyelid, at the corners - carefully blended in so that the dark circles slowly start to fade. The packed powder, applied over the concealer, under the eyes in particular, carefully blended in so that the darkness fades to a shadow. Eyeliner, carefully applied to first the bottom lid, then the top. Mascara, only on the top lashes now as there aren't enough on the bottom any longer. Blush, and more blush, on the cheeks, and in an attempt to find the shadow of a cheekbone. Then more, to ensure I still look as though I have color in my face in the right places. A bit of eye shadow, darker on the outsides, and lighter towards the center - hopefully it will bring out my eyes - or maybe it will conceal them entirely. All of a sudden it's a different face looking back at me. I see the layers of spackle and paint, and the cracks in the powder. I notice the slight smudge in the eyeliner and know that there are no eyelashes there that will conceal the fact that it will never perfectly follow the line of the eye. I know I look a bit more human, but as someone who is used to wearing very little makeup I still have no idea who this person is in the mirror. And sometimes the tears in my eyes aren't from the Taxotere. But I can say they are, can't I?

This is the face of cancer. This is the face of chemo.
It's not beautiful at all...

Yesterday Greg walked into the bathroom as all this was going on, fresh out of the shower, and I just looked at him in wonder. The tears (not Taxo-tears) started to well up in my eyes as I realized that somehow, I have no idea how, but somehow he has been able to look past that face and still see what is there, and what will be there again. I am so grateful for that. I'm not sure I'll ever understand how he manages to look past it, but I suppose the important thing I know is that somehow, he does. The thing is, I know he wishes I could look past it, too. Even more powerful than the face of cancer, is the face of love.

Then, this morning, I saw a photo of myself. It was taken at the closing ceremonies of the 3-Day, and I know I had seen it before, but for some reason this morning, it just struck me. I got the tiniest glimpse of what he sees when he looks past the face in the mirror, I think. I can't let myself for a second forget that this is the face of cancer, too. All of a sudden, it doesn't look quite so bad to me... (Thank God for sunglasses.) she's actually still kind of cute.

Seven more weeks. Tomorrow I'll be 3/4 of the way to the finish line. Just a hair closer to getting my face back... (A hair. How ridiculous to say. Hair.)

We met with Dr. Magrina back at the Mayo Clinic yesterday and surgery is scheduled for January 18 to remove whatever the hell is in there causing me angst and a growing waistline. Based upon the lab reports, he was in agreement that he didn't think it was cancerous, but that whatever it was, it needed to come out, along with my ovaries. The thing is, this will kick me right into menopause, and there isn't a doctor in the world that will prescribe me estrogen. I suppose I'll just have to wait it out, pray I don't have severe mood swings, and plan to stick my head in the freezer when necessary. Although I'm a bit nervous about this, as I am with any surgery, we really, REALLY like Dr. Magrina, and he'll be doing a very minimally invasive, laproscopic, robot-assisted procedure. Pretty cool, huh?

The end is nearly in sight...

And then, there were none...

spots on the liver, that is...
Well, there's one tiny spot left, but according to the PET/CT report, it's about 11mm and shows NO hypermetabolic activity, and wasn't even significant enough to mention in the body of the report. In other words...


That's right, under control, the doctor says. Praise the Lord and pass the wine...

He came into the room, and immediately said, "It's good news!" Good news. We love good news. Good news makes the twitching and the tearing and the wigging and the stomaching and the atrocious fingernailing and the bloating (well, maybe not the bloating) worthwhile. AND, those mystery masses in the abdominal region? You know, the ones that felt like they were shrinking, but then I didn't think they were shrinking? Well, they didn't shrink much at all, but this means that they are most likely NOT even cancerous!! If the chemo shrunk/eliminated the liver spots, then if these alien objects were cancerous, the chemo would have shrunk them as well. No shrinkage most likely = not cancerous. We both cried, but finally, tears of elation. Again, thank the Lord and pass the wine...

Someone up there is listening...

So, yeah. This is good. This is hugely good. Dr. C is an aggressive oncologist, so he wants me to finish out the course of chemo, which is fine. Eight more weeks I can handle (ugh, gag, when is it OVER) and then I can go out into the world and be healthy and hairy all over again. And hope and pray that it doesn't come back. At least not for a long while...

I'll be going back to the Mayo Clinic - Dr. C wants to get those things out of the abdominal region. Hell, I don't need them in there, they're not doing me any good. The miracle cysts that could have saved my life... what a concept. I go back to see Dr. Magrina on November 26, and discuss the next steps with him from that point on. My guess is that I'll probably have surgery of some type, hopefully laproscopic and non-invasive, sometime in January. I'm actually looking forward to getting those alien beings out of there.

I feel like I just bought some more time... I feel like I did something right... I feel like I owe so much to all those people who hoped and prayed and believed and knew that an outcome other than this just wasn't up for discussion (right Liz?). It never was. I feel like I couldn't have done it without the love and support and never-wavering friendship and companionship of the person I was fortunate enough to marry. And his incredible family who has wrapped their arms around me and treated me like one of their own. And mine, of course. I could thank people forever, and it wouldn't even scratch the surface of the love of friends and family and the kindness of strangers I have received. I can just hope that they know that they made a difference. Because I know they have made a difference.

I suppose I'm on the victory lap now... and I'm looking forward to the hustle and bustle of the holidays and all the festivities and distractions that will make the time simply fly by. I'm looking forward to waking up in Greg's arms on December 24 and bundling up and walking out into the cold for the third year and gazing out over the South Rim. Knowing that the world out there is so much bigger than I am and that I am so fortunate to be present in this space and time to enjoy it all and that I am fortunate enough to have taken the steps to ensure that whatever time I have on this earth, I'm going to make the most of it. And that I'll have known what it's like to live. To really live. And to love. Really, really love.

This is what it's all about.

Now, it's time to find a cure.

Interesting question...

I was talking to a very close friend today about this blog, and the fact that I find myself censoring sometimes what I put out there for public consumption. I guess I have to remember that I'm writing this for me, first and foremost, but knowing that people read, do I really have to mention the part about the bloating or the atrocious fingernails or the weird dryness on my left hand? It's not that I don't want to write the fears and all that lovely drivel, but all those fears really are interspersed with hope.

She asked me, "Is that part forced, or is the hope really that strong? I mean, it's not just a show for the readers, the people looking in?"

Is the hope forced? ABSOLUTELY NOT. Even at home when there's just me and Greg and the dogs and the fuzzy old head. Sure, the people looking in want to see it the hope, but do I think I'm going to die? The answer is still, no. Eventually, yeah, but not tomorrow, or anytime in the near future. And maybe not even from this.

The thing is, the hope, the belief - it has to be real. If I give up hope inside, what's left?

I know it may sound like a crock sometimes, all this hope. However, the truth is, I've worked really damn hard to get to where I am and I'm just not giving it up without a fight. Is there more that I really fucking hate that I don't post for the outside looking in? Especially now? The raw stuff about being sick and tired of this and terrified what that scan will show? Of course it exists. Are there disagreements in my life sometimes, and do we let fears reflect on life and become misdirected? Sure they do. The thing is, at the end of the day, with the bald head and the tears and the puffiness and the uncertainty, is there still all that love and hope? Hell, yes.

She was hoping that was my answer...
She was hoping that I was going to say that I REALLY feel it and not that I'm trying to be strong for everyone else.

Sometimes, I am. But overall, I REALLY feel it. Thing is? Sometimes I try to be strong for myself because if I feel it, I can be it. Or some shit like that. Not to trivialize it, but it works.

But yeah, lately sometimes I'm weaker and it makes me frustrated. Because I don't WANT to be weaker, even for a little while. I struggled through a hike on Sunday that I used to zip through. I pushed a little, but i did it. Slowwwwwwwwwwwly. What I (in)conveniently forgot is that some of that had to do with the 3-Day as well as the treatment and the fact that even though I felt and did fantastic, it just may well have taken my body longer to recover because of the nearly 4 months of treatment. Is part of me embarassed to hike with other people because I know they'll see me slowing when they used to call me "Jiffy Jen"? Unfortunately, yeah. It doesn't mean that I won't, but it also doesn't mean that fact doesn't enter my mind. I also know that the truth is that even if I gained a couple of pounds (Horror. Seriously.) in the past few weeks potentially due to the steroids in the pre-meds, it doesn't for a second mean that the chemo has stopped working.

I know I sound super-positive and all at times. The thing is, I also know I have a choice and part of that choice is being terrified not to be positive because I'm scared of negative energy. Which, in reality, is a good direction to head, with regards to (ir)rational fears.

More honesty? I'm really incredibly friggin' fortunate despite it all. My day-to-day existence and parts of the 3-Day helped me reinforce that in some ways. It wasn't until after that weekend that I didn't put my hair on for work on some days. And went to Nello's in just a baseball cap. Sometimes most days I'd prefer to walk around bald or at least, in just a ball cap.

Again, ever thankful for weekends. Red Sox caps. Silly dogs that lay with their head on my stomach while I have the cold glasses on my eyes. That incredible guy next to me every step of the way. And all those people who love me. And BELIEVE.

Now, time to go home and eat my beautiful salad with my beautiful husband. Maybe I'll even have a half a glass of (Dynamite!) wine. Just one...

The Airy Side of Chemo...

I haven't mentioned it, have I? The burping.

Oh. My. God, the burping.

And, of course, the constant heartburn.

I've been popping Pepcid regularly, or a generic version of Pepcid, that has for the most part kept the heartburn in check. Until it comes on. And then, it comes on. Blargh. Anyhow, we ran into an MD friend of ours the other night, and he remarked that I was not my usual boisterous self. Half-jokingly I said to him, "heartburn." Seems that was a fortuitous comment because he recommended I take Prilosec daily and that would be much more effective. I took it on Friday night. This weekend I ate pizza, sushi, jalapenos, baked ziti, and wine. Not all at once, mind you. Gross. However, all of the above were ingested between Friday night and Sunday night. Today? NO HEARTBURN! The little things that make a difference...

Still, there's the burping.

One thing to realize is that I could always hold my own and burp with the best of them. Not that this is necessarily something to be proud of, but yeah, I could always burp. Now? Homer Simpson has competition. I have no idea what the hell it is about the chemo, but the burps that come out of my body, particularly after something carbonated... let's just say I've knocked a picture or two off the wall. I think I scared the dog once.

Actual conversation from this afternoon after seeing a commercial for Prilosec:

"Huh. I wonder if I remembered to take the pill this morning."
"Oh boy, you'd better get up and take it RIGHT now. You just had some of that baked ziti for lunch."
"I didn't have THAT much ziti, just a small cup."
"Hon, you just have to LOOK at the ziti before the burping will start..."

Think Prilosec might use me in their next ad campaign??

Fuzz head

Work. I made my list this morning of things that need to get done this week. Or in the weeks after. Or things that need attention here at work. It's sitting there next to me, in green ink, with the cap of the green pen not yet replaced. I don't know why I tend to do that, and then I find myself surprised when the pen doesn't work anymore. Fine. Capped. Ready for the next encounter. I should start checking things off said list - truth be told, I could probably get through most of it by the end of the day. Thing is, it's Veteran's Day, which means most of my client-type-people have the day off. Seems to me that I should take some time for myself, too.

So here it is.

I didn't want to come here this morning. I got ready, painted up the face, put on my whatever it is that is on my head, and took a look in the mirror. Ugh. I know the ugh is mostly only to me. Still, ugh. Greg said he could bring in the set of tires and fill them up with the exhales I had apparently been letting out this morning. He knows what I'm sighing about, yet he tells me that all he sees is his beautiful wife. The fortunate part about all that is that even when I look in the mirror and see the six eyelashes on the bottom of my left eye, the dark shadows that I have tried so hard to conceal on the sides of my eyes, and the face that looks back at me from the mirror that doesn't accurately reflect how I feel inside... somehow despite all that, the fortunate part about all that is that somehow, he means it. Somehow, this man is able to look past the six eyelashes and the fuzzy hair, the dripping eyes, the dark circles, the bloat, and still see what is beneath that, and what will be again. I'm pretty lucky, huh.

The 3-Day came and went. Wow. Once again, what an incredible event. I walked every mile of the 60, and then some, if you count the camp, and the pit stops, and the pee breaks...ohhhh... the pee breaks, and of course, the walk back across the street from the camp to the Circle K for the much-deserved beer to smuggle back into camp. I wore no hair, of course - who the hell wears hair to walk 60 miles, for breast cancer no less. Hair would have just been ridiculous. If's funny though, aside from the fact that my eyes were just NOT cooperating with me, there were times that I forgot (can you believe that?) that I was different. Then again, maybe I wasn't so different after all. On the first night we got to camp, Greg I were walking somewhere - I think over to the Circle K. One of the crew members came running up to me - I forgot what she had said about having to give me what she handed me, but she gave me a huge hug and handed me a pin with a pink ribbon and an angel attached to a bookmark-sized card with some words of encouragement. We started walking to the camp exit and I turned to Greg and said, "How did she know???" "Um, sweetie? The hairdo might have given it away..." We were telling Larry this story sometime later that night and he laughed, so surprised at someone that is seemingly so self-conscious on a regular basis could ask that question. Ironic, isn't it? I realized this weekend one of the reasons that there was such a contrast between how I felt out there on the walk, and how I feel in day-to-day life with regards to my appearance. Out there, my fuzzy old head was a badge of courage. It represented strength to the people around me, the people that were all there for the same reason - to eradicate the disease that caused the treatments that gave me the bald head - and there I was, walking along side them, fuzzy head and all. (Walking up the stairs to left - notice fuzzy old head) Strength. Here, in the rest of the world, the baldness signifies illness. It's really an interesting dichotomy. There's that word again...

It was an amazing event - tears and smiles and laughter and hope and life and promise and love and family. It's incredible to me having Greg walk alongside me on this thing - I experienced that for the first time last year - because he's so proud and so supportive and just makes it all worthwhile. This year, it was pretty amazing having Larry and Jan there, too. I feel so blessed, having been welcomed as a part of that family. And then of course, there was Barb and Renee. We met them last year on the 3-Day, kept in contact with them, and walked with them the entire weekend. Strange how life works sometimes - I think perhaps they were just two people we were supposed to cross paths with. As limited an amount of time in the big picture that we've spent with them, it feels like we've known them for far, far longer. The banter and flow of conversation is hard to describe, but it just is. Barb is a survivor - her story is actually so similar to my first diagnosis - except she's got about 18 years on me. I always feel sort of like a stranger in a strange land in the sea of pink, on breast cancer events, or wearing the survivor "stripes". The shyness tends to kick in, and I often find myself trying not to be the center of attention. Which, I've learned, is pretty hard with my husband/publicist Greg around! He's helped give me the confidence though - and share my journey with others. Even though the shyness exists, I have fought through it in the chance that I can make a difference. Barb, she's the opposite. She wears her war badges proudly, and pinks it up with pride. The thing is, being around her at times rubs off on me, and somehow, I don't feel quite as reluctant to pink it up. Maybe there's strength in numbers. Maybe because I can stay half in her shadow. Whatever the case, it's a fantastic energy.

I was part of the survivor's circle at the closing ceremonies this year. They had asked Barb, and she asked them to have me take her place, because she felt I deserved it more. I'm not certain there's even a grain of truth in that statement, but I carried a flag that read "BELIEF" into the closing ceremonies. With no hat on. My own personal badge of courage, just for that moment. Greg had told me earlier, "imagine how much strength you will give to so many people, up there like that" and when the time came, it seemed like the only choice that made sense. In I walked with eight other survivors, and I could see in many of their faces the hesitancy that I know is written all over my face. The "what the HELL am I doing here and what the EFF am I supposed to do with my hands" nervous smile. But not Barb. There she was, on the front line of the group of the rest of the survivors, blowing me kisses with her pink boa wrapped around her neck. Yet, we were talking that weekend, and I thought I saw a glimmer of something pass over her face for a second - perhaps the realization that our stories were so similar, yet here I was, fighting again. It passed as quickly as it appeared though. Perhaps even the proudest and most full of life among us experience the fleeting fear.

Oh man, I didn't even scratch the surface of the rest of the stuff. Those trivial items like scans, and side effects, and bloat - you know, the good stuff. Scan results on Wednesday. Now everyone knows as much as I do.

I suppose I should do some work before leaving for lunch...

Ever thankful for sunglasses, Red Sox caps, and oh yeah, that guy next to me...----->