chemo and head shaving

So, after talking to my mom and reading back on my post from the other night, I realized that I should have added a few thoughts in. One being that I didn’t intend to write that post as a fingerpointer. What I was trying to say is that we ALL have those self protection mechanisms and we ALL tell ourselves what we need to believe in order to not live in fear. Before I got sick, I was probably the worst with this habit. So, I just didn’t want to put it out there like I was a big judger and you all don’t have it figured out. NONE of us have it figured out.

Anyway, yesterday was chemo day, and all and all- it wasn't so bad. We talked again about ending treatment. I told them that I’m scared but looking forward to it at the same time. He said that if at any time my body stops cooperating and it becomes detrimental, we will end treatment immediately. But for now my body is responding so well that he thinks we should just ‘buy the extra insurance’. I will have another scan in the beginning of April, and if that goes well I will probably continue treatment thru the month and stop either right before May or possibly continue on with one more cycle in May. I would really prefer to stop in April so that I have at least a little time to recoup before Meg’s wedding in Jamaica and then Abby’s wedding the following weekend. But I also know that it’s not really within my control and whatever is going to happen will happen.

So I won’t think on it too much. Instead I’ll obsess about wigs, since it’s getting to be about that time folks. I wore one out for the first time on Monday to have lunch with Ashley and then again I wore it to chemo. Jed took a picture with my phone:

My phone takes really terrible pictures, and even though I look like The Girl Without a Face, you can get the idea of the hair. It's actually long but I had it pulled up in a bun. I have several wigs here that I'm going to play around with, but I still am in search of the perfect look. I have gotten the scoop on a few good places to go in the city, so if I feel well enough this week I'm going out on the hunt. I have a party to go to this weekend that I'm getting fancy for, so I think that calls for a new look.

So, back to my appt, my white cells are high, thanks to the neupogen shots, and my hemoglobin was at a 9.7. They like to see it at least 10, so they gave me a shot to boost that in the same way that the neupogen boosts the white cells. I also got another transfusion done, just one bag of blood. When Millie was examining me, she could feel my heart kind of hammering away (I could feel it too), so the fresh blood really helped. I feel so much better today.

Again, I am just fascinated at the way we can trick the human body into believing it is healthy. Poisonous chemicals produced in a lab are breaking down my body in an attempt to kill the cancerous cells, while other lab-produced agents are injected back into me to keep the non-cancerous cells up and running, and then someone else's blood is put into me to trick my ticker into running smoothly. It is just amazing. I always donated blood in the past when I could, but I never really felt the direct connection.. I just knew it was a 'good' thing to do. But now, because of someone else's time and generosity I am able to live a better, and probably longer, life. It makes me so grateful.

After we got home from chemo I decided that I had had enough of this patchy hair, so Jed shaved it for me. It's not shaved bald, but this really helps to hide how thin it's gotten. Check it out-

This is Jed trying to convince Abby to let him buzz off just one lock of her hair. I have a feeling this conversation has happened more than once. Abby won, btw.

A combination of Ativan and pot served two fold. No nausea and no fear.

The artist and his muse.

water break.

Both Jed and Ab agreed that I looked like Jed's dad from behind. Sorry Rob!

There are those ears. Hi guys.

Well I can't believe I just posted that picture of me because it's kind of scary, but you see how you look after a long day of hospital and chemo and exhaustion. Shortly after this I was in bed asleep.

people are strange, when you're a stranger

this is my Dad... I love this picture.

This weekend I went to visit my father in the country. He's a photographer, and the above is of him, playing in the woods with his trees and his camera. You can check out his beautiful website right here. On Sunday Jess + boys (all 3) came to visit and that was just FANTASTIC since I haven't seen those guys since Christmas. It was such a good day, I swear I could just sit and stare at those babies and watch them grow. They are the most entertaining little beings in the world. Although I think I'm bordering on becoming Crazy Aunt Erin... at one point I realized I was hugging Xander so hard and telling him over and over in his little baby ear how much I loved him, that it was probably freaking him out. Either that or I physically damaged his tiny three year old body from all that squeezing. Ugh, I don't know I just love them so much that I never want to let go. Anyway, I'll put pics up soon.. I'm waiting to have them emailed from Jess.

On Saturday afternoon, Dad and I went to the reception of a gallery opening of a local photographer that he knows. The photographs were beautiful and there were a ton of people out to support him. Everyone was drinking wine and eating and talking. I love being in situations like that because you can overhear the most amazing conversations, and as everyone knows I love, love, love a good scoop. I can't help it, people are so strange and the way they think can be so different from the way I think.. I just love to get these little snippets on their lives and then try to figure out what makes them tick. It's like people watching- another of my favorite hobbies.

So, I overhear this woman talking about how she's trying to quit smoking and it's so hard, etc. etc. She then goes on to say that her father died from cancer and she knows she should quit but blah blah blah. Someone asked her if she was afraid that if she didn't quit she would get sick like her father. She said-I am NOTHING like him, he just sat around all the time and didn't watch what he ate and never exercised and I'm a mover- always on the move! I couldn't believe what I was overhearing; in essence, she was blaming her father for getting cancer and at the same time proclaiming how even though she purposefully inhales known carcinogens into her lungs every single day she wasn't going to share the same fate as her father because she was a 'mover'.

At first I was pissed and had to just walk away. People with cancer really are so stereotyped. Unless it's leukemia, it's like people automatically assume that you somehow brought it on yourself. That in some way you 'didn't take care of yourself' enough and because of that you caught cancer. And therefore it's really all your fault.

But really, I've thought about this all weekend long and the whole way home today, and it doesn't even make me mad anymore. It's a defense mechanism. People are scared of things that are not within their control, and cancer is one of the biggest not-in-control things that you can have happen to you. So, to ease that fear, they try to rationalize it and how it won't happen to them by basically blaming the people who did get sick for something that they were doing wrong. That, of course, these people do NOT do. I mean, think about it, people say this kind of stuff all the time. 'Oh, well yes but she did such and such, or didn't do this and that, or really should have xyz'd more'. Shit, if that was the case every single person who doesn't have access to an all-organic diet and stress free yogi life would be dead and gone from stage IV self inflicted cancer ten years ago!

It really doesn't make me mad.. I think it's so interesting to be able to hear this from an inside/outside perspective. She had no idea I was listening or that I was sick or even who I was. I sometimes feel like everything that is said around me is subconsciously edited because of my cancer, so in a way I liked that I could hear something so clearly un-thoughtout com out of her mouth. It also makes me realize the ability of human beings to self protect in such a way that you don't even realize you're doing it. We are tricky creatures.

Anyway, enough out of me for tonight. I guess I'm trying to get it all out since I have chemo again tomorrow. Boo on that.

Oh, does anyone know how to add music to this blog? I would love to be able to add a song to my posts, something to go with my mood. Like my own personal theme music! Help?

Where were you one week ago?

Because I was here, and it was amazing. Here are pics from our last day and night in Cabo..

Horses on the beach

View of Villa La Estancia from the ocean

Taking a trip around 'Lands End'

Private yachts in the marina...pretty amazing

Homemade salsa made fresh at our table

Time to go..

Goodbye Cabo, I love you!

Now I'm back on Almond Street, trying hard not to feel so sick and hopefully get it together enough today to get down to Chinatown for some acupuncture. Tomorrow morning I'm taking the boys for a visit to the country- we're going to visit Dad in Sheperdstown for the weekend. Jess and her boys are coming for the day on Sunday, and then I'm back on Monday to begin the cycle again on Tuesday. Ugh, is it May yet?

chemo day

Well, I'm home from Cabo and back in the real world of Almond Street in February. This isn't much different than Almond street in any other month, except that the trash on the street is covered by a layer of snow. It almost makes it charming, but it doesn't quite get there and I'm more excited than ever to live on my new CLEAN and sunny street.

I'll post more about Cabo when I'm feeling better, but today was chemo so I'm pretty beat. Roxy drove up last night from Baltimore and took me to my appt. I just realized while I was sitting here that I spent the past week with my two oldest friends- my sister and then Roxy. It feels so good to spend time with people that have known you forever, and totally get you, and love you either because of or sometimes in spite of that! And then AbbyMaxx came over to visit this afternoon and we all spent a few hours together while I was getting infused. Roxy got into the hospital bed with me and Ab brought her pizza and me soup and we just chilled. I like to bring the party to me, right Ab?

It was actually a great appointment, and Dr. Sun was super positive. In fact I have never heard him be more positive, or at least not in a long time. His exact words were that I was doing great and that this was just for insurance and that it was better safe than sorry. My white cell count was a little low, but I had been off of the Neopogen (or Neulasta, I always forget which one it is) shots for a week so it makes sense, and my hemoglobin level (red blood cells) and platelet count were high, so my overall level was high enough for treatment. I also gained 3 pounds since last treatment- YEAY!!!!!!!!!!!! I know it has to do with all of the amazing Mexican and seafood I ate in Cabo, plus all of the Pina Coladas. I had a constant stomach ache at the end of every day, but it was so worth.

Even though it was a good appt today, it's pretty scary for me to talk about the end of my treatment with Dr. Sun (currently slated for beginning of May) when just a month ago I had "experts" telling me that I have a year to live. This whole cancer trip has been excruciatingly painful at times physically, but if you took that and multiplied it by a million- that might come close to describing how emotionally painful it can be. I know that I am not a statistic and etc, etc, etc- but you try taking that kind of diagnosis in stride. It really screwed me up in the head for a few weeks. But the truth is, nobody knows. NOBODY KNOWS. People die every day; good people, bad people, strong people, weak people. I could die in a car accident tomorrow and not die from cancer at all! I read an online EC listserve, and there are people on there literally every day living with Stage IV esophageal cancer and beating the odds. Surviving for years and years. Of course there are people on there who die too, but this cancer is really just a small mimic of what happens in the rest of the world on other levels... people die, beat odds, do incredible things, suffer fallbacks, every day.

Anyway, my point is that I had a rough few weeks trying to process everything and I finally realized that I can't live my life like that. There are things about living that are totally scary, but so many more that are amazing, wonderful, and 100% worth it. And when I heard Dr. Sun talking to me today, I felt happy and hopeful but then instantly afraid of those feelings (what can I say, I'm working on it!). I keep saying that I want to stay on chemo forever to keep the cancer at bay. But that's not really true. I want to finish chemo and move on and get back into the rest of the world, scary and not.

xo

Hola

We're still in Cabo having an amazing time, but coming home tomorrow. Here are some pics so far:

our room

our beach

the pool

this is my 'not getting a tan' pool outfit.

This is Ramone. He thinks he's my Mexican boyfriend.
Aye carumba!


Oh, Cabo.

last night at The Office.

dinner at Edith's

Everyone in Cabo loves Jess. These boys REALLY love Jess.

Ok, that's it for now. Jess is having a massage and then we're going into town to do some shopping. See you soon..xo

i hate packing.

This morning I got a few things out of the basement for Cabo.

Now I need to wash everything and pack. Ugh- PACK. I hate that word. I don't mind doing the laundry, in fact I kind of love it. There's something about sorting and cleaning and washing things carefully that is therapeutic and soothing to me. But then afterwards I have to figure out what to bring and plan and not forget, and all of that is annoying and stressful to me. I think I'll do it later.

First I'm going to Brooklyn with Ashley. It's the perfect day for a little shopping! Then I need to get home in time to try and not mess up my moms directions for her 7-layer dip so I can bring it to Superbowl Sunday at Abby/Jeds.

I feel pretty strong, health-wise. I just gave myself the third Neulasta shot last night, so my immune system should be healthy and strong for Mexico. I'm a little nervous, only because I've never been this far away from my oncologist in the middle of my treatment. But he thinks I'm doing great and doesn't have any concern about the trip, and he told me to just call if I need anything. I'll be fine, right? Plus this could actually be looked at as an exercise in gaining weight. I'll be on the Pina colada diet for 5 days, how could I not put on a few lbs? This is good, and I'll be fine. Right?

who's the boss now?

Charlie just peed on Boss's head. You might ask- wait..what? how? why? But really, Boss should know by now that he can't mess with Charlie when he has a work in progress. It wasn't really Charlie's intention to pee on him; he is just a machine and feels the need to alert every square inch of Fishtown of his neighborhood (and eventual world) domination. And Boss's face just happened to get in Charlie's way. The worst part is that all I did was laugh so hard and neither of them seemed to notice or care..gross..

I feel MUCH better today and am heading out to ReStore, looking for inspiration for the new house, plus an old banister or two. Later I'm going to see Juno with Lyd and Abby. I heard it's great and can't believe I haven't seen it yet.

The pic above is of the boys in their favorite chair in the house (notice how it's ripped to shreds from bulldog toenails) this morning. They like to sit there and keep an eye on Almond Street and haze the mailman as he walks by.