Wednesday, June 22, 2011
So last night I was in bed thinking about when people say to me "You're so brave" and I was feeling like, "Gee, I don't feel brave." So I started to really mull it over. Most of the people who say that are people who have never had cancer or any other major illness (thankfully, and I hope all my lovies remain that way!!!) And I think I know why that is...
But there's another side to this too. The other cancer warriors out there, we are all very funny about the bravery thing. Like we never think in terms of stages, I mean if we hear someone is newly diagnosed we of course want them to be diagnosed early. BUT we don't think in terms of, "well you're Stage 1, Ha! That ain't nuthin!" Because being diagnosed with any illness, but cancer especially, is just plain devastating! And it affects you in so many ways, physically, mentally, emotionally, spiritually. It can paralyze you, depress you, hell it can hurt like a son of a bitch!
But I do notice that when we warriors hear about someone who went thru a longer treatment, or a more intense regimen or a surgery that we didn't have to have, we always think, "Now there's a warrior!" I said that to a friend Joseph, who I went to school with from 5th-12th grade, who went through 60 brain radiation treatments last year. I only had 14, by treatment 7, I was so happy to be halfway thru I considered dancing on the machine! Also my ears are so blistered that I can only imagine that by treatment 40 Joe's ears just burst flames. So I told him how struck I was by his toughness and he wrote back most eloquently "i'm no different than anyone else in the struggle. I refused to let it interfere in my life."
So I've figured it out, why we don't feel brave or special or tough... It's because we really have no choice in the matter, if you know what I mean. A firefighter, a police officer, a soldier, they have a choice. Their uniform doesn't physically compel them to enter a burning building or jump into a fire fight. They choose to do it. That my friends is brave! People who stand up for the right thing when everyone else is against them, that's brave.
When you're told you'll never be cancer free but we can "extend you're life", the "choice" to fight like hell isn't brave, it's logical. Like hell yeah I'm taking chemo, can we double it? What if I yell at the cancer will that help? Does Sloan have any Voodoo priestesses on payroll? I have a daughter who needs me, I have a husband I love and can't balance a damn check book and can barely boil water, they'll starve without me!
I didn't even think, I just put one foot in front of the other. And the truth is, if god forbid you find yourself in this position, you will too. It's a survival instinct, it's that part of you that will yell, hell no I won't go! It's there, we probably use it all the time without even realizing it.
As for the sense of humor thing, look, I'm already sick, why be depressed as well? You'll be surprised at the fact that you can laugh about stuff, but you can. Go to Cafe Press and type in "chemo" or "cancer" and see all the t-shirts that people created. Cancer patients, who said, fuck it, I need to laugh. Mel Brooks was once asked by 60 minutes why he made so many movies that feature Hitler. And he said it was because during the war he hated him so much he wanted to have some sort of revenge on him and he realized the best revenge was to get people to laugh at the muthafucker! I think that's genius!
Sunday, June 19, 2011
Well washing behind my ears has never been so easy. And you don't realize how much your hair keeps the water from the shower from flooding into your ears until you have none.
So I've been waiting FOREVER to lose my hair. The Sloan chemo nurses said it would most likely just thin from the Cispatin (the 1 hour, kidney drowning, ovary frying chemo drip) but I had read all over the internet about people who lost their hair from it, so I chopped it off in Jan just waiting and waiting and waiting. And it never fell out (not that I'm complaining), so I psyched myself up months earlier than I needed to.
When I went for my first radiation consultation they said, it's not a matter of if, just when, they felt by the end of the 2nd or 3rd week it would start to fall out. They were dead on, by the middle of the 3rd week my hair started really thinning and if I wore a white shirt, I also wore my hair follicles for the world to see. And then Wed. June 8th, I was having my morning bowl of Kashi Go Lean Crunch before heading to the Sloan cafeteria for second breakfast. And I got a spoon full of hair, yum! And in the car on the way to Sloan every time I ran my fingers thru my hair huge chunks came out.
So on the way home from radiation that day, we stopped to pick up Sophia at my in-laws and we were talking and laughing. Then we head home, and while I'm sitting on my love seat sitting in front of my facebook page, I run my hand thru my hair and an ENORMOUS chunk pops out. And I say, I guess this is it.
So my dad says, well that's what I did, I just pulled it out. I said really? For some reason that sounded like fun. Apparently I was the only one who felt that way, Dad went home, Mom took Sophia into the Den to watch Madagascar and John was like, you are not going into the bathroom to rip out your hair. At first I was like "oh ok" and then I said "WTF, it's my fucking head, if I wanna rip the hair out I will dammit!" So I went into the bathroom, took the trash bin and put it in the sink and I went to town.
First of all you have to understand, the hair literally popped out. No pain, no tugging, I just grabbed a chunk, tugged and it came out. Now the bulk of it fell out on the very top of my head. Kinda like a Monk's do. But the hair along my forehead line and along my ears and neck would not budge. So I had a bald middle which was SO attractive. But it was oddly liberating. Especially since it was crazy hot that day, my head was literally cooling off as I tugged. Then after about 20 mins, all the hair that was coming out was out and I was left with a spikey ring around my head. If you can imagine those hats they sell with fake hair around the rim, imagine that without the hat and that's what my head looked like.
So I grabbed John's buzzer and took the rest off. So it looked very crew cuttish. And then I had to show Sophia. I didn't know what to expect, but they nurse told us to tell her that I got a hair cut. So I said, "Sophia you want to see mommy's new haircut? I have no hair now." And she was totally cool with it. She asked me if it came out in the shower and I told her no, that mommy cut it (I didn't want her to fear the shower and worry her hair would "fall out") and that was it. She rubbed my head and went back to watching her movie.
Then I took pics and posted them on Facebook. My poor mother-in-law was so confused, she called and said "you were just here, what happened?!".
But I still looked more of Marine than a cancer patient, honestly, I looked like I could start some serious shit. The only thing I'm missing are visible tattoos. And I think I might have freaked out my backyard neighbors (everyone on my block knows about me and they have all been wonderful, I have some pretty cool neighbors yo!). But the week before I had run into my neighbor in the back and we were talking about our kids and stuff. Then a week later I go out to put out the trash, at maybe 4pm, and she is in her backyard and says "I hope we're not making too much noise back here?" I was like "Huh?" and she said "The kids are making water balloons." and I said "Sounds like a great time to me!" So I wonder if she was like, I hope that skinhead doesn't attack my children! HA!
I got tired of the roughness of the fuzz, and I took out my venus razor a few days later and shaved it. My scalp reminded me of when we pet those stingrays on our honeymoon. Smooth and Velvety. Seriously, I could not stop rubbing it. I am obsessed with my head. It's so freeing. Between scarves, wigs and plain ass bald, I like being bald the best. I feel cooler (temp wise, not attitude wise) and my head has an interesting shape. I do wear scarves when I'm out though. I feel like being bald is very jarring for people and it is now the same as wearing a sign that says "I have cancer". So I mostly wear it for other people. But I do love scarves too, it's just that after a while they get hot and I usually pull em off.
I've worn two of my wigs so far. We went out to dinner for John's birthday and I wore my good one that the American Cancer Society very generously gave me. BTW that was awesome. I met my dad's ACS peeps (he's an ACS navigator) and his friend Fran took us downstairs at their HQ, took out a mirror and a huge bin of wigs. And we tried a dozen on, it was SO cool. We figured out which color I looked best in and which style. Plus Fran was ACE at styling them so I learned so much about how to care for them and how to make them look perfect!
Today I took my pink one out for a whirl. I got quite a few looks on the drive to my Brother-in-Law's. It was cute, but got itchy after a while and I just yanked it off. But I lasted pretty long in it. Plus I ordered one of those cotton caps that they recommend for patients to wear underneath, but I haven't received them yet. So I think I'll get more into the wig thing soon.
What I love about scarves though is they have kind of a pirate vibe to then, which I totally love!
The best way to describe not having hair is, most of the time you don't feel any different, but then you turn on the AC or you feel a nice breeze and it feels like your hair is sopping wet and it's Feb. Sometimes I'll have what I call, "hair phantom pains", where I find myself trying to tuck non-existent hair locks behind my ears.
The other crazy thing is that the steroid (which I'm still on, I was supposed to stop it cold turkey the last day of radiation but I got a massive headache so the doc decided we should step down even slower, they had thought I had stepped down enough since I was down to 2mg, but apparently that wasn't enough for me). Anyway, the steroid causes you to grow hair where women don't usually enjoy growing hair, like your chin or neck. But the steroid did me one better, it also grew on my nose and from the corner of my eye down my cheek. Like how is that even normal, men do not have hairlines from their fricken eyes!!! And then there was the cisplatin, it did nothing to my head, BUT it kept the hair on my legs from growing. So I didn't have to shave the entire time I was on chemo. Which was crazy cool, but the rest of me looked like Robin Williams ala The Fisher King.
So that's the deal with the hair. I'm surprisingly cool with it. I will photograph all the wigs and post them on facebook eventually. Plus I have a whole new scarf collection thanks to my cousin Cindy who dropped off all of her headwraps, that she washed in the most divine smelling detergent! I literally just inhale the pile of them whenever I pass them in my bedroom.
On a side note I went to Essentials in the Mall the other day to pick up hair gel for John and a new brush for my wigs. And I swear the teenager at the counter, who was lovely, was thinking to herself "She knows she has no hair right?"
Also I have this really bizarre habit that when I play Uno on the iPad I have to rub my head before I made my move. I really have no idea why that is...
P.S. John just read this over and insists he did not freak out over me pulling out my hair. He also wants everyone to know that he thinks it was very nice of him to help me shave the back of my neck. To which I responded, yes, you are a true humanitarian. Now he hates me. Hehe!
Tuesday, June 7, 2011
Ok so I've been putting off this post for a very long time. Only because it's going to be heavy on the religion talk and also because I don't want to offend anyone with my perspective. But hang in there, there are some damn funny moments. But let me lay some ground rules. Firstly it is never my intention to impose my beliefs on anyone, they are mine, they are silly, I love 'em, but like I said they are just mine. I also respect everyone's position on religion, love it, hate it, I get it. And I expect a couple of people will be reading about some of these things and think they are hokey or nonsense or whatever. And that's cool too, we all believe what we believe. But I'm going to explain things from my perspective so just take it for what it is.
Ok so back in February my mother asked if I would go to a healing mass at her catholic church. Now let me explain my parents to you, they are what I call "Super Catholic". They go to church every Sunday, they know every hymn, they have church friends, my mom is a Eucharistic Minister (the people that dress in robes and hand out the host or the wine) and they go to bible classes all the time. They give their priests rides to places, they go to functions, they are totally into this whole Catholic thing. BUT you'd never know it unless you were related to them. They aren't preachy, Christ doesn't come up in every conversation, unless we're talking about how Don Brown totally stole his ideas from Holy Blood, Holy Grail. They can easily discuss any religion without ever disparaging another and as I once famously told my dorm mates at Rider, my mother wouldn't care if I sacrificed goats in the backyard as long as I cleaned the deck when I was done (for the record I have never sacrificed anything, except maybe some virgins...).
My mother does occasionally ask me about things like demons or Ouija boards because they'll have a sermon on it and she seems to think I have some kind of perspective on this. Now I don't believe in either so to participate in these conversations I usually have to quote films like Poltergeist. But other than not building your house on an ancient Indian burial ground, I really have no additional information. Also my mom does like to hide palms in my house. Which is really funny cause I have no idea how she does it. I just know that I'll pull out a pocketbook from the closet and get hit in the head with them, or find them under my mattress. For some reason right now they are on the floor of my basement, which is a little baffling. But really, it's endearing.
Anyway, so she asked me to go and I said yes. Look if it was my daughter's brain that woman was drawing a picture of and placing dots on, I'd burn so much fucking sage my neighbors would have to call the fire department. So it was an easy decision. Now I expected to go once to make mom feel better, I ended up having quite an experience and I now go to all of them.
The first surprise was that my mom had no intention of going with me, yeah I was totally like WTF? Apparently this is the one Catholic thing she isn't that into. But Dad came with me, he went to a couple when he was battling breast cancer (a fact I did not know). He tells me that after the mass you go up to the "healers" and you are expected to fall on the floor. He feels it's a bit gimmicky. Truth is I'm a pagan, if there's anything we excel at it's gimmicky. So I'm OK with it but I am half expecting some revival meeting shit. I'm happy to report, it's not like that at all.
The very first thing I notice is the sense of community, there is something oddly comforting about being surrounded by people who are in the same boat as you. I wish they weren't but such is life, so if we're gonna get sick, we may as well huddle together and bond! So the mass is slightly shorter than the Sunday Mass but the same basic rituals. And then instead of a Homily, Monsignor Jeff explains how the Healing portion of the Mass works.
Monsignor Jeff is a recovering alcoholic, he's been sober for years but he speaks about his struggles openly and honestly, there's no infallibility with this man, I like that a lot. He talks about the different kinds of healing people come seeking, physical, mental and spiritual and how important each is to the individual. But then he addresses the "falling". And he says something that makes my pagan heart all a flutter! He explains that the falling is symbolic of surrendering. There's no hocus pocus, there's no one with crutches being touched by a healer and then magically walking on their own. The "falling" is something you allow yourself to do, nothing more. Now we pagans are all about symbolism, so this is totally speaking to me.
Then Monsignor Jeff says "it's really symbolic of surrendering your life over to Christ". And well that's when Jesus and I have to have a little talk. You see I was there as a guest and I had complete respect for and belief in the power of this process. However I'm happy being a pagan, so I won't be converting to Catholicism. So we start to talking. Now when you're a pagan or wiccan you choose your own pantheon. Meaning you choose the god/s and/or goddess/es you want to worship. The reason is that ultimately we believe that we personify the powers that be in our own form and each deity has traits that speak to us. But when I say you can choose, I mean you can really choose. As in you have endless possibilities. So believe it or not you can choose to worship Isis, Pan, Athena, Jesus, etc... The difference is, we assign them all a small "g", meaning we think they are all equal. So talking to Jesus is not really out of my comfort zone persay.
I thank him for allowing me to participate in the healing mass and that I totally respect it. Now we pagans have a bunch of rules, among them are you can't just ask for something and expect it to materialize. Quite frankly you can ask for something, follow all the rules and still never see it materialize, that's called life my friends. But anywho, if you ask the universe or the gods for something you have to be serious. For example if you need a job, you can't just light a few candles and expect Donald Trump at your door, you have to get yourself out there, hit the pavement and put out that resume. You also can't treat the universe like an ATM machine and just ask for shit all the time. You have to balance out your requests, show the world you are grateful for what you already have.
So I promise Jesus I'll figure out how to balance the mass. And since by this point my head hasn't started spinning and no lightening bolts have hit my ass, I'm pretty sure Jesus is cool with it. Ultimately I balanced it out with two things. I give monthly to St. Jude's children's hospital, for one thing that one is a no brainer and two St. Jude is the Saint of healing, so I thought that one was a slam dunk. And I have decided to include Jesus in my morning meditations with the goddess Ostara. I think it's only fair that I honor them both for all of my blessings, but I also like to think they have interesting conversations when I'm not around.
Jesus: Hey there, what's your name?
Ostara: It's Ostara. Interesting factoid, they derived the word Easter from my name.
Jesus: SHUT UP! Easter is totally my holiday!
Ostara: Yup, I know, I know. But you have to admit it's pretty funny that no one has figured out that all those chocolate bunnies and eggs represent fertility huh?
Jesus: Yeah that really is amusing, but chocolate crucifixes really would be kinda icky.
Ostara: Well you got me there. Hey what's up with Christians always giving you a 70's aesthetic?
Jesus: I know I'm either forlorn on the cross or there's a painting that looks like a head shot circa 1976. But you have to admit, my hair is really fabulous.
Ostara: Oh totally!
So once I worked out the particulars, I was ready for the healing. So after the Mass portion, Monsignor Jeff leaves the altar and then returns and meets with the healing teams at the front of the congregation. They gather in a circle and hold hands (sorry Catholics but this is so awesomely pagan that I'm practically floating off of my seat!) and then they break off into three teams. I choose the same team at my friends, the Bottiglias who I spoke of a few blogs ago, the woman clan that I love so much. And what I love is that one of the healers has a total Stevie Nicks vibe to her.
It's a rather magical experience and my friends' mom Madelyn (my sister soldier) asked if she could come up with me and I was a sobbing mess! I explained to the healing team that I had Stage 4 lung cancer, which was about 3 weeks after I was diagnosed and I have to say that was not easy to verbalize. They put their hands on me, said prayers and, when I was ready, I was lowered to the ground by Matthew. Matthew was John's student and was on my brother's swim team when they were kids. Poor Matthew has to lower all 200+ lbs of me and does it as gently as possible. I should really pay for his physical therapy. Anyway, I took in the peace of the moment and then looked up and saw my dad, husband and friends ready to help me off the floor. It was a crazy powerful moment!
I've been to four so far and the highlight of the Mass is really the testimonials. It's just nice to hear people talk about overcoming illness or escaping a bad relationship. People talk about battling addiction, fighting cancer, recovering from grief. You applaud everyone's successes and you never get tired of hearing stories that have happy endings. And then there was the last mass.
The first testimonial of the night was an older woman who starts off by saying she was sick and the doctors didn't know what was wrong with her. So we are all holding on to see how this turns out...oh my. So she says that they put a Foley catheter into her bladder and her bladder hurt like hell. The nurse says to her "well your bladder is mad at you cause you have a Foley in there." They send her home. She tells us that her sister came over. And then she called her daughter to come over. Then she called her other daughter to come over, that daughter (apparently the only reliable member of her family) takes her back to the hospital and gets her to see a urologist. The Doctor tells her "I will take out the Foley but I will do nothing more until you come see me in my office on Monday". I can only suppose this happened at SIUH cause seriously, who are these dumb fucks taking care of this woman?
So her daughter prays over her bladder. She gets the urge to pee, but is too afraid to use the bathroom. Now at this point I finally realize, this is not a story about baffled doctors who couldn't help her and then suddenly they figured it out. Nope, this is the story about how Jesus helped her pee. I look up and I see my dad and Laura, who are in front of me, looking down, laughing. I look around the church and everyone is trying desperately not to laugh out loud. And then suddenly I realize how this story is going to end.
So her daughter tells her, mom don't be afraid, just go into the bathroom and try. She says no, but her daughter urges her to try. So she goes into the bathroom and she says "and after 4 days by the power of Christ I urinated!" The entire congregation erupted in applause. And then she said it a couple of more times which only made us applaud more, until finally someone had the presence of mind to take the microphone away from her.
Christine looks at me and says "how did you not laugh?" And I was like "because I kept hoping this wasn't really about peeing, by the time I realized it was, it was too late, my brain short circuited!" And then Christine says "If you don't blog about this, I will kill you!"
So Laura and I have discussed this at length because we are riddled with guilt over it, but Laura made an excellent point. We weren't laughing at her pain, it was the dramatic flair of her story. And the fact that she kept telling us things that weren't important, like I still don't know why she called her sister and other daughter. What the hell did they do? Taunt her with a running faucet? And then of course there was the fact that she just wasn't in on the joke. She could have told it and been in on it, we could have all laughed together and we would have genuinely applauded that she found her healing. But instead she just kept going and going with endless details and this overwhelming sense of doom. I'm telling you this story went on for close to 10 minutes. I'm pretty sure even Monsignor Jeff was baffled.
On a side note, at the second Mass I attended in March, Monsignor Jeff told a story about someone who wasn't Christian who received healing from a Healing Mass, because "he may not have believed in Jesus but Jesus believed in him." I kinda took that as a sign that Jesus and I were cool. So anyway that's the Healing Mass, all in all it's pretty wonderful experience. It's a time for bonding, sharing experiences, hugs, kisses and hope. And I would like to take this opportunity to thank Jesus for all my worry free peeing experiences. I owe you one buddy!
Sunday, June 5, 2011
Oh Sloan Robe, sear sucker and periwinkle blue.
You no doubt once were soft and bluer,
But after so many washes you're kinda rough,
And not quite so periwinkle, just a dull blueish now.
Sometimes you are big enough to cover my huge ass,
Sometimes you are so small I worry that my big ole low boobs will swing out and traumatize my father.
I'm so glad I always get to wear pants with you, or everyone in my general area would have PTSD from seeing my thighs.
I love when I am in a waiting room with other patients, we all kinda look like we're in One Flew Over the Cuckoos Nest.
I keep waiting for a Native American to throw a water fountain through a wall and set us all free.
But at least the nurses are nicer than Nurse Ratched.
Oh Sloan Robe, I bet Sloan pays a fortune for you.
I oddly love you.