Cancer

The Spoon Theory aka But You Don’t Look Sick?

This is the best explanation of what it feels like going through chemo. It was written by a woman with lupus and I can’t recommend it enough for anyone looking to better understand someone with a chronic illness or someone going through chemo. It’s been almost 6 months since my last poison and I still have to remind myself that I no longer have to allocate spoons in my day to day.

The Spoon Theory

by Christine Miserandino http://www.butyoudontlooksick.com

My best friend and I were in the diner, talking. As usual, it was very late and we were eating French fries with gravy. Like normal girls our age, we spent a lot of time in the diner while in college, and most of the time we spent talking about boys, music or trivial things, that seemed very important at the time. We never got serious about anything in particular and spent most of our time laughing.

As I went to take some of my medicine with a snack as I usually did, she watched me with an awkward kind of stare, instead of continuing the conversation. She then asked me out of the blue what it felt like to have Lupus and be sick. I was shocked not only because she asked the random question, but also because I assumed she knew all there was to know about Lupus. She came to doctors with me, she saw me walk with a cane, and throw up in the bathroom. She had seen me cry in pain, what else was there to know?

I started to ramble on about pills, and aches and pains, but she kept pursuing, and didn’t seem satisfied with my answers. I was a little surprised as being my roommate in college and friend for years; I thought she already knew the medical definition of Lupus. Then she looked at me with a face every sick person knows well, the face of pure curiosity about something no one healthy can truly understand. She asked what it felt like, not physically, but what it felt like to be me, to be sick.

As I tried to gain my composure, I glanced around the table for help or guidance, or at least stall for time to think. I was trying to find the right words. How do I answer a question I never was able to answer for myself? How do I explain every detail of every day being effected, and give the emotions a sick person goes through with clarity. I could have given up, cracked a joke like I usually do, and changed the subject, but I remember thinking if I don’t try to explain this, how could I ever expect her to understand. If I can’t explain this to my best friend, how could I explain my world to anyone else? I had to at least try.

At that moment, the spoon theory was born. I quickly grabbed every spoon on the table; hell I grabbed spoons off of the other tables. I looked at her in the eyes and said “Here you go, you have Lupus”. She looked at me slightly confused, as anyone would when they are being handed a bouquet of spoons. The cold metal spoons clanked in my hands, as I grouped them together and shoved them into her hands.

– Finish reading at: http://www.butyoudontlooksick.com/articles/written-by-christine/the-spoon-theory/#sthash.Gy3hXBcI.dpuf

Thanks to the Bloggess for introducing this.

I Took the Pirate Flag Down

I took the pirate flag down today. I’ve been meaning to do it for a week or two. One day I just looked at it and realized I didn’t need it up any more and didn’t want it up anymore. It was very large and black on my bedroom wall and dominating my space. When I needed to feel more like a badass, more like “fuck the world, I’m still here” it was there. Now life is starting to seem gentler and I’m finding a new way in it and the flag seemed very harsh on my wall.

My birthday was last week and it was weird. Part of the weirdness was I felt like I should feel like it was an accomplishment getting there, but I didn’t, and was annoyed to even feel that way. The after effects of this rough ride are annoying. Now that I’m not putting poison in my body every other week or recovering from surgery I feel like I should be able to be back to B.C. But that’s not the way it works and it’s really annoying/frustrating.

I had a bit of a wakeup call a couple of days ago when I saw this video:

It was hard to watch, but it is also inspiring and a kick in the ass. For most of us, when we hear we need to make lifestyle changes for longterm benefits, we put it off. Or we say “fuck it” and just don’t worry about it. But if I get cancer again in the near future I am going to feel like the worlds biggest asshole for not taking care of myself. I’ve already played the “it can’t happen to me” game and lost big. It would just be supremely stupid for me to go through all this and then not do what I need to do to give myself my best shot.

However it sucks having to make major lifestyle changes. It’s hard. As someone who doesn’t love eating right, exercising, or being the sober friend at happy hour (I have had a year of experience with that off and on now), it’s freaking tough. Then we can add the fact that I’m 31 so this isn’t a lifestyle many friends are sharing and then add the fact I moved somewhere that loves bad for you food and delicious drinks. It just makes me want to burry my head into a pile of pillows and not come out.

Kate Moss once said “Nothing tastes as good as skinny feels.” She was unfortunately wrong. Try Commander’s Palace’s bread pudding soufflé. Or Drago’s chargrilled oysters. Or a glass of good wine after a stressful day at work. I could go on and on…

I gave myself a free pass that got too comfortable while I was going through treatment and the immediate time after because I needed something good. When your bones ache, you’re exhausted constantly, having hot flashes, etc, food was the only good thing I had going because nothing else felt good. Now I’ve got to close the book on indulging myself and accept the fact that I got dealt a bad hand and I’ve got to work with what I’ve got. Folding would be stupid with stakes this high. So the pirate flag has come down.

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Just to show it’s not all hard times.

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Gratuitous Wally photo, i.e. how he spends most of his time at my job

Addiction and Flaws.

It’s been almost a month since I last posted. I could lie and say it’s because I’m moving on or because work is keeping my busy or some other legit sounding excuse, but like I said, that would be a lie. The real reason is because I am a gamer and I have fallen through the rabbit hole with Heroes Charge. I’m pretty sure with the hours I have spent playing that I could have cured cancer instead. But instead I’ve been building my army of fantasy style creatures and battling. It’s a sickness.

I get it from my Mom. The first time I ever heard her swear involved a serious game of Mario Kart where Princess cut her off and an emphatic “Bitch!” escaped her lips. There was also a “shit happens” button above her desk for several years before she finally decided to take it down due to me being able to read it. It was pretty funny given that she ran the office for my Dad, a plumber.

Work is good. It is wonderful to be back in advertising, and better yet, be at somewhere I really wanted to work at. It’s a strange feeling that I’m building a future here. It’s really the first job I have felt that way because I always knew we’d leave eventually and come to New Orleans before this. Here there is no next step, this is it. It’s kind of awesome. I don’t feel this pressure to achieve something in a set amount of time before we leave, I can just take things as they come. I also missed the people and process of advertising, it’s just wonderfully absurd and inappropriate. Those of you that wonder about Mad Men, yes. I believe it was like that and worse back in the day given how we behave now. There are 5 bottles of whiskey above my desk that belong to one of my co-workers. In a recent internal meeting reviewing work, a very senior person was giving their thoughts and prefaced that what they had to say may not be worthwhile with “you can call me a fucking dildo head” if we thought it was dumb.

It’s also weird and nice to be surrounded by people that have no idea about the big C. Some do, but I work with over 100 people and most don’t. I get complements on my short hair and I’m stunned. It’s going to take some getting used to to not be responding in cancer mode. I’ve had a couple more doctor’s appointments and all have been good. I need to get through my two years to be in a safer shape. (not really good or safe, but significantly better odds). It’s two years from the surgery date so I’m not so far off from year one. My plan is to celebrate year one with a trip to Harry Potter world because I am a huge dork. I also wanted to do something silly and fun that wouldn’t take a bunch of vacation time and that fits the bill.

It was tough for a bit today because I was going through stuff that my Dad recently drove down from Vermont for us and came across a big pile of cards from our time in VT. These ranged from 30th birthday cards to anniversary cards to cancer sucks cards. I was to out of it and tired to sort through when we were packing so they all made it down. The 30th birthday cards are the ones that got me. I was diagnosed a little over a month after my birthday and before then it had been so built up as a big birthday. It was a rite of passage that my friends and I were all going through and I had a lot of feelings about what my 30s would hold as I closed the chapter on my 20s. The cards reflect that with lots of wishes and hopes from friends and family for my 30th year to be full of great things and adventure. It’s hard to read those knowing what happened so shortly after and is something I’m still recovering from and learning to survive. It wasn’t the 30 that any of us wanted. 31 is close and I look forward to leaving 30 behind.

On a related and sarcastically funny note, it is super hard for me not to say or write to friends turning 30 “can’t be worse than mine!” or “hope you don’t get cancer!” But I resist and you’re welcome for that.

Weddings Cure Cancer

At least that’s my theory. And I don’t mean planning a wedding for yourself, that may cause cancer. Another theory. I mean weddings where you get to watch two friends make that special commitment to each other and you get dressed up and then you get to eat delicious things and drink for free. It is like an explosion of happy things and if that doesn’t cure cancer I guess we’ll have to turn to science.

I have three compelling examples supporting this theory:

1. The first trip I made after my initial surgery, which I had a really tough time recovering from, was for my childhood friend’s wedding. In an example of the universe aligning, she happened to be marrying a friend of mine from high school so it was great to see two people I knew and cared for separately find each other and make each other happy. I wasn’t sure how I’d do, but I made it to the wedding and through the ceremony and it was wonderful. I really love the photo I got of us too.

Maria's wedding

Maria’s wedding

1. In early December when my immune system was at one of it’s lowest points, I flew connecting flights to SF for a wedding and did not get sick. I did wear the shameful SARS mask, but whatever. It was flu season and I rode on four airplanes and spent time in 4 different airports, two of them multiple times. I also managed to do everything I had planned. I also got on a plane four days after getting dosed with poison and still had a great time. The only low point was when I wanted to murder the Southwest desk lady who suggested I waited for everyone to board if I was having a tough time, right before announcing that anyone with children or disabilities that need to pre-board should see her. I still wish some bad things on her that I will not put in print.

2. I had my final big surgery the beginning of March and a wedding in Kansas City last weekend. I made it and even danced. This is just ridiculous because I was told 4-6 weeks to be able to go back to work (if I had a job) and that the drains usually stay in really long in the hip. I got those suckers out in record time and was off the pain meds after two weeks. Advil is a good friend of mine these days, but only intermittently. It also came in perfect time because I was feeling really low. I think it was a mix of recovery (pretty normal for major surgeries) and being home a lot by myself (and fuzzy companions that never want to talk about Rob Kardashian posting that photo of the Gone Girl covered in blood and comparing it to Kim, I mean WTF?). I wasn’t homesick for SF, but I was really homesick for my friends and family in SF. The KC wedding included a lot of them which was an amazing pick me up when I really needed it.

Next up we have three more weddings between now and the end of May and then another in November. I’m pretty sure this means I’ll never get cancer again.

Back Down The Rabbit Hole

My surgery is March 4th. Less than a week away.

I originally thought they wouldn’t be able to schedule me for weeks and weeks, like end of March or early April. This is actually good news, but still felt like I had been standing on a trapdoor that opened when they told me. This will give me the best shot at going to friends’ weddings and hopefully getting a job and moving forward. I recite these things to myself over and over mentally, trying for some sort of positive emotion without success.

The closest thing to a positive emotion I have about this upcoming surgery is relief at where I’m able to have it and the doctor performing it. I put relief on the blue/green side of my emotional scale. So relief is what I’ve got going for me.

In the neutral camp, I have the positive things list I keep reciting. I’m also hoping I’ll feel less scared when the time comes and there will be less tears because this isn’t an absolute unknown this time. I have an idea of what’s coming and what I’ll wake up to (high as a kite on all sorts of pain meds).

On the red/black side of the scale I feel some despair at finally reaching a point physically where I’m not in pain daily and am starting to get physically stronger and I’m going to give it all up to be an invalid again. And hoping that I heal well. I can wear jeans and I don’t have to tuck in a soft shirt to keep my scar from hurting. I can walk a couple of miles and stand for long periods of time and I’m fine. It’s been months since my original surgery and this is new for me. Yeah I guess chemo probably fucked up the recovery period, but still… I thought I’d have more time to appreciate things before I had to give it all up again. It’s eerily similar to when this all started and I just wanted a few days to appreciate my body not being in pain or disfigured, but just had appointment after appointment of different pain causing things.

So I’ve got a 7am surgery that should last around 6 hours. I’ll be in the hospital from Weds-Saturday. I’ve got a private room and a bed for A. this time, thank goodness. Wally is going to spend a few days with his favorite uncle. He just had his last round of shots and is now free to roam the world starting the day of my surgery ironically.

Also ironic? This show is playing the night of my surgery.

Also ironic? This show is playing the night of my surgery.

(On a lighter note, as I wrote this I heard scraping and splashing coming from the kitchen. Wallace had spilled his water bowl all over the floor and was splashing it around. I told him “Nope, I’m not getting involved” and closed the bedroom door and retreated. I just washed the floor out there, so assuming the water will dry and it will all work out.)

Is Getting A Re-Boob A Thing?

So I got some surprising news recently. The place that I have been wanting to get my surgery done by and assumed would not be able to get it done by due to cost is giving me financial aid. As A. would say: Far fucking out man! I was pretty depressed about this because the insurance situation seemed like a no-go and I assumed because of our savings that they would say ‘thanks for trying, but really that’ll be $32k+’. Instead they have offered me a deal that is expensive, but doable and especially doable thanks to a very generous family member helping out. I only applied so that I could tell myself I’d tried everything when I had to inevitably accept I couldn’t go there.

So on the long list of shitty life things going on right now, this item and associated items can now be crossed off! This place specializes in breast reconstruction and my surgeon specifically does fixing botched or rejected reconstructions. Women come from all over the country to go here, so it’s a big deal for this to work out for me. I haven’t posted until now because I’ve been waiting for the other shoe to drop. I had a followup consult with him this past week and met with the finance lady and assumed something would come up and it would be a “just kidding” that this would work out kind of deal. But it appears that it honest to god is going to actually happen.

So I’m basically having a do-over which sucks because it’ll be a long recovery. They’re going to take tissue from my hip this time since I already utilized my abdomen. It’ll be around a 6 week recovery time, plus more to feel normal in terms of flexibility and strength. I had my original reconstruction done in mid-August and I just started PT again because I’m having back problems due to my gluts being fucked up from the recovery and chemo. They’re also going to lower my abdominal scar so that I can hopefully wear a reasonable bathing suit bottom and hide it. This will also involve a belly button do-over. I’m not psyched about adding the abdominal surgery, but I figure since I’m going to be in pain and incapacitated why not try and fix it?

I think I’m in a better and worse position due to having gone through this once before. It’ll be easier mentally because I know a lot more about what’s happening to me and that I’ll come out on the other side and get through this. Last time it was a terrifying unknown. The added toughness to this is that I know how miserable it felt in the first few weeks after surgery and what a long road it was recovering physically and it’s hard to willingly put myself through that again. This is also why it’s such a huge deal to be able to go with the surgeon I want. I have so much to overcome mentally already with this, that not feeling 100% about the person performing the surgery is a pretty big thing to have to deal with.

The hospital is also amazing which is a relief after my challenges at DHMC. I will have my own room, there is a murphy bed for A. (he won’t have to spend three nights in a chair), it’s near his job, and they only do plastic surgery there and predominantly for my surgeon’s practice so I won’t have to worry about them being short staffed or having emergencies to compete for nurse attention with. It’s a pretty snazzy place too which I think I’d enjoy being taken care of in if I were going in for something more minor. It’s also only about a 10 minute drive from our home so I won’t have to endure an hour+ car ride when I get discharged this time. There’s also a free icee machine. Plastic surgeons…

My Mom is going to come stay with us for an undetermined amount of time to help me and with Wallace while I recover since A. will need to work as he just started his job. Wallace fortunately now basically takes himself out if you open the door to the yard so he’s much easier to care for these days. I’m sure our friends and family down here will also be a solid support.

I should know early this week what my surgery date options are. Sooner the better…

On related good news, I am finally starting to look more like I made a questionable decision shaving my head rather than had chemo. My eye lashes and eye brows are starting to grow back too which is reassuring. Much easier to powder on some eye brows with a foundation to stick on.

My super soft and fuzzy hair.

My super soft and fuzzy hair.

Moving On

As I mentioned before, it’s totally anti-climactic finishing chemo. First you can’t really do anything to celebrate because you feel like crap and second you go from having this routine to having nothing. I thought it would be nice if I had less side effects this go around like the doctor said could happen, but I didn’t waste my hope on it so I’m not let down which was good because hello side effects! It’s been a week since my final chemo and I’m still in the midst of unpleasantness, although I can eat so that’s exciting at least.

Physically I am exhausted and get lightheaded, as well as the regular aches and pains that come with Taxol. The biggest difference is I feel free to move forward.

We moved into our place January 2nd and have been settling in. It’s really wonderful to have our own place after being nomads or guests for the last 10 months. It’s freeing to be able to do whatever we want with the space and know that we get to stay here as long as we want so we can invest in settling in.

It’s a bit strange staring from scratch after spending years accumulating the right things so we had everything we needed in San Francisco. We’re totally missing a kitchen box that I think must have been left in Vermont so we’ll get it in April. It’s the only solution that I can think of as to why we don’t have any chopping knives, coasters, juice thingy, etc. A. has been a craigslist king and we have almost all of the furniture we need which is impressive given that we haven’t been in our place for a week yet. Guest bed is ready to go. I even have pillows for you.

We picked our place in Uptown because it’s a fun neighborhood to live in and it’s got character. Since our kid timeline is pushed back thanks to the poison in my body, we figured we should make the most of it and push off our suburb house life for a while longer. There are a lot of cool parts to our new place as well as some interesting elements, like the iron spiral staircase to go downstairs. It’s just narrow enough that carrying things like a laundry basket upstairs is a pain in the ass. To offset that though we have a huge upstairs private deck which is pretty sweet. I already have plans to put a kiddy pool out there once we get into hot weather. The fact that we don’t share any walls/ceilings/floors other than the living room and guest bedroom is amazing after living in SF for almost 8 years. Don’t even get me started on the space we have…

The neighborhood is a prize too. We managed to find a coffee shop straight out of San Francisco hipsterville where you can get your bagel (which is decent so obviously not from SF) with smear for $3.50 or with lox for $14. I’m dying for someone to order the $14 bagel so I can see if it’s gold leaf. Want a tomato on that $14 bagel? That’s another $1. We also have a market, multiple restaurants, a yoga studio I’m excited about, and the best ice cream parlor in town within two blocks. Further from that we can walk to Magazine or St Charles and access everything there. Mardi Gras is going to be amazing with our access to the parades and the street car to the quarter. Tonight kicks everything off so we’re going to walk a couple of blocks and check this out.

I’ll take photos.

Tomorrow we bring our unnamed puppy home and that will be our big life change. No more sleeping in until 10am. Wish us luck.

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We had to choose from 7 adorable fluff balls

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The newest member of our household, unnamed as of yet.