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

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:

Thanks to the Bloggess for introducing this.

Footloose & Fancy Free

On a scale of a regular person, I am totally not footloose and fancy free, but I broke that scale 8 months ago. Fuck that scale.

I got my last drain out on Wednesday which was excellent. I get to resemble a normal person at my friends’ wedding next weekend and not look like a science experiment. I got it out early because I’m local and I can come in next week and get a giant needle stuck in my booty/hip to drain the excess fluid there. Glad you read that one right? What kind of fucked up world am I living in that I actively chose to make an appointment to get a giant needle stuck in my ass and am happy about it? This is what cancer does to you.

I am doing well though. My comparison is of course not a healthy/normal person, but my first surgery and chemo for 4 months. I’m doing awesome compared to both of those. I have had 5 surgeries since this all started, not counting the biopsies. I really am in crazy town.

I’ve also been only taking advil the last few days so I am back driving again. Miracle upon miracles. I am still wearing my slutty superhero costume, but it’s a lot easier to hide under regular clothes without tubes. I am going to have to start taking something to sleep again as a consequence of not being on pain meds anymore unfortunately. I’ve got these crazy leg things that are like a blood pressure cuff around each of them and squeezes my legs on and off throughout the night to prevent blood clots. I also need to sleep on my back propped up a bit. Totally not how I naturally sleep so it’s a bit tough getting there naturally. Side sleeping is still weeks away unfortunately.

I also stepped up my prematurely 70 years old life style with an elderly person’s shower chair. Pretty tight right? My parent’s shower is huge and has a seat in it so I was good there, but our bathtub doesn’t have that option and I’m not quite dependable to stand that long or be able to bend over and wash my feet easily so I’m rocking the shower chair. Also in the beginning, showering was super complicated right after surgery and I had to sit to do it.

My hair is actually thick now, which is just lovely. Waiting for it to get a little longer so I can actually get it shaped into a style instead of it’s current “Look I have hair!” status. I’ve also got full-blown eyebrows and eyelashes again. Looking like a person more and more.

Walking is still pretty rough, I can go 3-4 blocks currently, which isn’t enough to accomplish much unfortunately. However, we live a couple of blocks away from a lot of things so it’s enough to get what I need in the neighborhood (ice cream, sandwiches, chocolate cake, etc).

Anyways it’s Friday and I’m doing pretty good, so have a beer for me. I’m still on antibiotics, so I need y’all to step up.

(click the photos for captions)

Puppy Love & Insurance Nonsense

Sorry, couldn’t resist. So most of you know that A. and I have wanted a dog for years now. Long ago before we were dating I got a dog in college and he was actually my number one puppy sitter. By the way kids, getting a dog in college is a bad idea, getting a dog because you’re having trouble getting over a bad breakup is an even worse idea. Just. Don’t. Do. It. The only good thing that came out of it was my ex dog sat for me one night that my house was having a party and it was going to be too loud for Layla and she freaked out at his place because it was a strange place and I wasn’t there (plus she was kind of prone to freaking out in general). Long story short, she kept him up all night. A little bit of karma there which he even admitted at the time. But anyways, that has little to do with this other than I was a terrible dog owner once and I have been not so patiently waiting about 10.5 years to try again and do it right this time.

We didn’t get a dog in SF because we were traveling too much and two cats plus a dog in a one bedroom apartment is just too much. Then we finally decided to make the move to New Orleans. My favorite moment in telling someone that we were leaving was with my agency’s head of HR, her immediate response was “Jenna you can get a dog now!” (I’d spent a lot of time with her yellow lab, hi Lux!) We spend over 5 months at my parent’s house with three cats, two dogs, and assorted farm animals. I loved having dogs around again all the time. Especially my bad dog, but good girl, Lola who is a yellow lab/retriever that I was home for when my Mom got her as a puppy. She is the most optimistic creature in the world. Just seeing how happy she was over such simple things lifted my spirits when everything was crappy.

I knew I wanted to get a puppy for several reasons: 1. Not having successfully ever raised a dog (either of us) it seemed best to start with one without baggage, 2. I knew I was going to be home for a bit before getting a job so it was the ideal situation to get a puppy, 3. They are so damn cute.

We started looking on PetFinder weeks before we could bring one home. I used to do this every now and then in SF too, so I’m used to this form of torture. We mainly looked at shepherd and lab puppies. The goal was a family dog that was trainable and we also wanted a big dog if possible. We moved into our place on January 2 and went to look at puppies in Mississippi the same day. There was a litter of 7 shepherd puppies available and it sounded like the perfect situation. We liked the idea based on the advice from our puppy book of being able to get a feel for their personality with their siblings. We were looking for calm. We got to the shelter and were told to just wander around and look at dogs. We found the puppies which were not the cleanest looking group, but still pretty damn cute. It was a really hard decision with 7 adorable puppies all vying for attention. I was glad we’d read the puppy book because we both would have gone for the more outgoing guy who was of course super cute, but from what we read, he would be more challenging to train and require the most attention which wasn’t necessarily on par with our experience and lifestyle.

We went with the puppy formally known as Oblong (seriously what?) who mostly sat around and watched as his siblings mobbed A. He wasn’t scared, but he also was content to just check things out. We brought him up to the front desk and filled out the paperwork and were told we could come back the following Weds. This actually worked out perfectly because it gave us more time to unpack, puppy prep, and get the cats calmed down from the move.

Weds came and I hardly slept from excitement. We felt super prepared to get him with our reading, ok I’ll come clean, Caesar Millan’s puppy guide. I totally agree that Caesar is a bit of a blowhard (he refers to one of the puppies in his book as a canine Gandhi/Martin Luther King), but he also has a lot of good points for puppy training aligning with dogs’ natural behaviors. We were so ready to do everything we were supposed to do with the new puppy, starting with getting him to get into the car on his own and into the kennel using a bully stick (aka dog treat that is made from bull penis, I kid you not). So none of that happened. He just looked at us. We put him in the crate and he was silent the whole ride.

We’ve had Wallace/Wall-e/Buddy/Little Homey/Mcmuffin/little terrorist for three weeks now. We’ve also totally changed training techniques after starting puppy class with the local SPCA. Not because the Caesar stuff was wrong necessarily, but since we’re going to class regularly it makes sense to stick with that training. Puppy class is the fucking best. There are 10 puppies of varying sizes and ages and most of the class is spent watching them play. Wallace’s bff right now is a pomeranian puppy about the size of your hand. I promise I will work on getting a photo.

It’s crazy how fast puppies grow up. See the size difference in three weeks below

He’s also started understanding us better, can go up and down stairs, can sort of run, likes being outside now, and is starting to help a bit on letting us know when he needs to go outside. He unfortunately does not like car rides yet or cuddling. Cuddling with him his hilarious. He screams bloody murder, which we of course ignore and act like he’s into it. His toy collection is extensive. He has tons of stuffed animals (we went to the thrift store and loaded up) and various chewing on toys. He is starting to understand “no” and other displeased noises like “HEY!”.

Soccer puppy

Soccer puppy

One of my favorite things is watching him and Myles (aka the Poop) learning to have a relationship. Myles is very interested in him and will hang around quite a bit. Myles has finally started smacking him instead of just running away (we think it’s best for Myles to try and get the upper hand while he’s about the same size as Wallace and outweighs him). Myles has this intense desire to have someone lick his ears and Nero has never really been into it, so he lets Wallace lick them which inevitable turns into chewing on them and Wallace getting smacked. However, cranky Uncle Poop doesn’t give up. The ear thing happens probably 20 times a day at least. They also play fight a little which is pretty damn cute. I’ve only seen Myle’s tail get fluffed up once with Wallace so at this point he’s less afraid of the dog then he is our niece. Myles also swishes his tail constantly, and even more when he’s annoyed, which is not the best move with a playful puppy.

How weird uncle Nero feels about Wallace

How weird uncle Nero feels about Wallace

Having a puppy while recovering from chemo is harder than I thought. After spending the last 6 months just concentrating on myself getting better and taking care of, it’s hard to have to focus so much time and energy on something else. When I’m tired or need a few minutes I’m used to just being able to respond to that, but Wallace can’t be left alone and if he needs to go out, he has to go out. A. definitely takes the lion’s share, but it’s still tough. I think it’s tough in good way though. It can be frustrating though with being overly tired and I also have a lot of achiness in my hips that make getting up and doing stairs rough at times.

Puppy selfie

Puppy selfie

So insurance nonsense (I wanted to post about both of these and decided to combine into one unrelated post). So as most of you know, I had good CIGNA insurance that I had to give up Jan 1 because they don’t offer it in Louisiana (I had it through California). This really sucked because the best reconstruction place doesn’t take any of the insurances you can buy through the bootleg Louisiana insurance marketplace, but they do take CIGNA. So I bought the best insurance I could (Platinum baby!) and thought I’d be ok because it has out of network coverage. It’s Blue Cross Blue Shield of Louisiana. Prepare for another lesson in fucked up American insurance.

So I called the center for restorative breast surgery and spoke with one of their insurance reps there. They have people come from all over the country because they’re hella good so they have a lot of experience dealing with all sorts of insurances. Apparently even though mine is the best I can buy in Louisiana and is costing me $470 a month, it still sucks. The scheme that the insurance company runs with out of network is this:

In-network means that the insurance company has an agreement with your provider on what the maximum costs for the procedure can be. Neither you, nor the insurance company will pay more than that and your costs are only up to your out of pocket and deductible maxes usually. I think this should sound familiar to everyone. So out of network means there isn’t an agreed upon costs for the service which means that your out of pocket and deductible tend to be much higher. Mine, for example, has an out of pocket cost for in-network providers of $250 and out of network is $1000. Out of network deductible is $3000. So I thought based on everything that I read from the insurance company while purchasing that once I paid my $4000 that they cover the rest. Nope. There’s something called the “allowable amount” which was not mentioned at all in any of the literature when I purchased my insurance (why this is a scam). If the costs for a service are over the “allowable amount” then you are still responsible for the difference. The boob people told me that would be around $32000. Holy shit right? I am now in a very frustrating email exchange with my insurance to figure out how to get an accurate estimate for costs with their “allowable amounts”. So far I’ve just had them email me back telling me I haven’t met my deductible or out of pocket. Clearly a bunch of rocket scientists over there. I tried the phone, but the person was an idiot and no help and it required a 30 minute hold time. I’m also filling out a financial aid request with the boob people to see if they’d be willing to do it not charging me $32,000. I’m not holding my breath (they’ve got to pay for those rhinestone shirts somehow), but worth a shot.

My actual plan is that A. and I are both circling come promising job opportunities and I’m hoping that one of them will offer an insurance that will be in-network for the boob guys. If this doesn’t happen I’ll be back to square one and probably will involve a night of drinking heavily. So let’s all cross our fingers right? My new timing is June (assuming that will work with whatever job I take) and I’d like to go in for surgery on my birthday. I know this sounds totally weird, but if I can’t get it done while I’m 30 (shittiest birth year every) then I’d like to start 31 with fixing things. I have four weddings starting end of March-end of May and I don’t want to miss any so June is the best option also. I don’t feel bad asking a job for 4-6 weeks off because I’m 30 and a chick and normally they’d probably have to deal with my taking 3 or so months off from having a kid somewhat soon, but I can’t do that for a couple of years due to poison and reoccurrence risk, so seems like a decent trade for them

Some Days Are Harder Than Others

I had a whole other sparkly happy post that I planned to write, but it’s on the back shelf because it’s just not where I am today. Today I am angry and sitting firmly in the chair that says “Cancer Sucks”. I’m wearing black, I have spiky hair, thick black eye liner, and am glaring at everything around me.

Andrea from Daria is my internal image today, just angrier. Normally I picture myself as Daria but wish I was Jane.

It’s hard to have bad days on two levels. The first is that having cancer at 30 is hard to go through in general so when it’s a bad day that’s a lot to take on because I’m already dealing with so much just to get through this. The second level that it’s hard on goes back to my very first post about this where I talked about how I don’t want people saying “they’re sorry”. It’s the same idea where when I have a bad day I know it makes the people who love me feel bad/worried/sad and I want to cheer them up/not be responsible for more worry where I’m concerned.

But it’s part of the deal, I have bad days and this is my space to be able to get some of that out. Today is also day 5 of chemo cycle and that tends to be a low one in general mentally.

Like I said last week, my trip to SF was very fortunate in that I didn’t have a lot of issues with side effects from Taxol. This week I am not so lucky and obviously I’d much rather have it this way, but being that it’s my body and I’m experiencing it, it still sucks. Bone pain really really sucks. Muscle pain is way better because it feels like I worked out which is kind of funny. I’m ratcheting up my internal age to 80 or so today based on pain. It also sucks because this is day 3 of the pain and it’s the worst one yet (with this cycle) which is frustrating. I’m assuming at this point that it will be like my first taxol dose and I’m not going to be out of the woods with the pain for several days which is a bleak prospect. I’m also one of those people that does not like taking meds and to not be miserable right now I’m taking meds for the pain, so just adding to the list of things I don’t like that’s currently my day. It’s a fragile scale I’m working with of things I don’t like and things I can deal with and today is tipping it.

Indulging in a bad day makes me feel a bit like a kid having a temper tantrum in that it feels a bit spoiled. When you have cancer everyone tells you how brave and strong you are which can feel more like being told what you should be and when you have day like this that you don’t feel like being strong and brave because it’s more effort than you can put in, you feel like you’re breaking the rules. There’s some satisfaction in that, a bit like my coffee indulgence. I harbor a not so secret hatred of the happy smiley photos of women that are on every single Breast Cancer retreat/group/info thing and take a lot of satisfaction in my infrequent bad days because guess what, cancer sucks, no one is smiling about the shit we have to go through.

Hello Lover

We lived in San Francisco for almost 8 years and returned to it after 5 months of living in my parents and 3 weeks of living with a friend in New Orleans (our new home). Our stuff was in boxes in three different states, neither of us had jobs yet, and we’re living in this surreal cancer world where life hasn’t been normal for a long time.

Visiting San Francisco in our current situation is like what I envision spending a week with your ex that you were in love with but broke up with because you wanted different things but you haven’t moved on to someone new yet must be like. You look really good San Francisco.

It’s wonderful, sad, and surreal all at the same time. We hung out with our friends, going the places we used to go, and nothing there has really changed. It still fits like a glove and that’s hard and confusing.

photo 1

Our welcome committee that spawned the week long teddy bear wars

It was also the perfect chemo vacation. We stayed with friends in a neighborhood that had a lot nearby that we could walk to. This was key because I decided taking Muni (the public transportation system) was a bad idea with my weak immune system since it’s flu season and riding Muni is a like sharing a dirty needle. Because we lived there so long and left this year I didn’t feel like there was anything I had to see so it was ok being really limited (I can’t walk very far either). I already did my farewell to San Francisco tour in March. Our friends and family were also all willing to come to us and keep things low key. We were there for a wedding and it was wonderful to get really dressed up and go to a party where everyone was dressed up after living in PJs and yoga pants for the last 4 months. In a funny turn of events, A. forgot his suit and I forgot my dress. You know, the only two articles of clothing we actually needed to bring. I got to have a dress montage at the apt with two friends lending me an assortment of options.

photo 3

A, Mark, me, and Ash: wedding glam.

We got there via Southwest for a couple of reasons. There are direct flights between SF and NOLA through United (that’s for you SF friends and family), but we had left things that wouldn’t fit in our car to come back for and we also knew we might have to leave early because of me so free checked bags and no fees for canceling or changing flights won the game (I’m available for hire Southwest). I didn’t wear a wig because I thought that might get weird with security and also didn’t want it to look all ragged from wearing it on a plane all day so I balded it up with my face mask. They let us pre-board which is pretty sweet since you can choose your seat, it was also necessary because I get tired doing a lot of standing and the find your seat shuffle would have been tough. It was the first time I have ever not been delayed between LA and SF, it was a cancer miracle. We didnt have anyone sit next to us for for the first plane because my face mask, baldness, and sad cancer look I gave everyone walking down the aisle. I eased up after that.

I didn’t know how my second taxol treatment would go and was cautiously hopeful. I made plans, but caveated that they could all fall apart. I also didn’t make other plans because I knew I’d be exhausted and might be sick on top of that. A typical day in SF for me was a plan with someone (like lunch), a few hours of resting, another plan, and then going to bed way before everyone else. All part of my being 65 years old right now. This obviously limited my ability to see people and that was the hardest part.  I also couldn’t do a big meet up because bars aren’t really a great place for me right now and I get too tired to interact with a ton of people.

My big accomplishment was being able to see everyone that I made plans with and do everything I planned. It helped me feel like a person and not just a patient. I also felt good because I paced myself well enough to get through it all. I still had some rough spots, but that’s chemo. Monday I got lunch and went for a little walk in my old hood the Upper Haight with a friend. I had a true Upper Haight experience in buying a $4 cup of coffee and having to avoid poo on the sidewalk every few feet. Stay classy SF. Anyways in this short excursion I plummeted in how I felt, going from fine to exhausted, dizzy, and unpleasant feeling. No rhyme or reason as to why the worst I felt from this treatment was a week from the dose. My tiredness came and went too. One night I’d be up until 11pm and another I’d barely be able to keep my eyes open at 9:45. I fortunately didn’t get any fevers while I was in SF which was my biggest concern. No trips to the emergency room in SF!

One of the best and the hardest times was visiting my old office. I spent around 4 hours at the office just going from aisle to aisle and sitting and talking to people and I still didn’t have enough time. On one hand it felt so good to see everyone and on the other it just wasn’t enough. I wanted more time to spend with my friends and catch up in person on their lives and also just enjoy time together without the pressure of making the most of it. I left when I got exhausted, well maybe a while after I got exhausted, and still wanted more.

I think it will be a long time before a year will pass when A. and I don’t make a trip to SF because of our friends and family there so I just have to pacify myself knowing I’ll be back and next time I’ll be able to do so much more.

We got rained in and had a bonus day in SF. Fortunately our flight was cancelled before we got up so we didn’t have to sit around a crowded airport waiting on delays. We spent the day in the apt with our friends hosting us and it was a much needed rest day for me and bonus time with them. The storm of the century was pretty unimpressive from where we were staying and we never lost power or internet.

photo 5

That flower bed is like totally flooded. Storm of the century!

The ride back we had delays from SF and from LA which were pretty lame. Also lame that an airport the size of LAX doesn’t have decent food options. I paid $17 for a sandwich that sucked and a water. I expect a movie with those prices. A. got some guff from the SF Southwest gate attendant about getting pre-boarding for me. She apparently said that we could get on last instead. I kind of wanted to cancer shame/punch her in the face when he told me. And by “kind of”, I mean that I fantasized about it for the rest of the time we waited to board and exercised a lot of restraint especially when she announced that anyone who needed to pre-board should come see her. I’m not wishing that she gets cancer, but I definitely wish something bad happens to her, worse than my usual go-to of a bird pooping on her head. I never said that I’m not vindictive.

I expected to be really sad when we left and feel weird about leaving. I didn’t. I looked forward to coming home to New Orleans and I think that was a really important step in my breakup with San Francisco. SF will always have a place in my heart and have been an important part of my life, but I’m moving on and excited about my future with New Orleans. It’s a new relationship and we have a lot to experience together still, but it feels right and I think it could be the one.

photo 4

Looking good San Francisco


New Orleans Chemo

I figured I’d write a post since I know multiple people are wondering how things are going down here with my new medical team. I met with my new doctor today at my new hospital and am feeling good. I was amused at the check-in because they ask about you going to Africa or interacting with anyone with ebola and the elderly woman next to me checking in said “thank you for checking” after both questions. Here’s a helpful chart from NPR on your chances of catching ebola in the U.S. right now.

Adam Cole and Ryan Kellman/NPR

So out of all of the transmittable diseases that people could be bringing into the cancer ward, this one really doesn’t seem like it should be a question rather than them asking “do you have a cough or any flu symptoms”, which they didn’t ask. Most cancer treatments=damaged immune systems so I am much more concerned about someone bringing a flu in than ebola. Plus getting coughed on is a way that ebola can be transmitted so two birds, one stone! Personally I’ll be looking out for sharks. There was a tornado warning last night down here (the weather woman actually said “get to your safe place” for people in the more at risk parishes. I have never heard a weather person say anything like that, this is why we need to stop using the term “polar vortex”, stop trying to make cold weather scary. “Make sure you have wood stacked in case you lose power” is not on the level of “get to your safe place”.) Anyways, since there was a tornado down here, there’s obviously an increased risk of sharks

One of the things I like about my new cancer center is that it is very new so it feels nicer and cleaner. The DHMC is totally clean, it’s just a mental thing about things being shiny and new. It’s also nice to switch up because I’ve had so many shitty things happen to me at DHMC that I can go in to Ochsner and not have any baggage. I will build that baggage up of course, but at least I get to start fresh mid treatment, even driving somewhere new is nice. It’s also less than half the amount of time it took to get to DHMC so another perk. The only thing I would change is to have the gowns be Saints jerseys. The center was built from donated money from the team owner so this isn’t like a totally random desire.

Normally I’ll have chemo on the same day that I get my blood drawn to check all my levels and meet with my doctor, but since this was the first time they’re meeting with me I went in the day before. My new doctor has a good beard and communicates very well. I really really liked my oncologist at DHMC, so he’s at a disadvantage because he’s not Gary, but I think we’ll get along fine.

So this time I’m taking Taxol. Taxol is supposed to not have a lot of nausea associated with it, so that’s a big plus, I say ‘supposed to’ because we are all our own unique snowflakes when it comes to side effects so there’s no sure thing. The main issues that taxol causes are 1. a possible allergic reaction to the mixture agent (detergent I’ve been told) which I’ll find out tomorrow if I am or not (let’s hope not). I am taking a huge amount of steroids at 8pm and 2am to help with this, not sure if I’ll be sleeping tonight which could be pretty lame. Apparently the first time they have to do it like this, but it if it works then I can do it with the chemo next time? I don’t totally understand, but whatever, it’s one bad day. The other main issues are 2. some big word that I could look up and am not going to because I’m lazy, but your fingers and toes get really tingly because the circulation gets messed up. This can cause permanent damage so you have to keep an eye on how severe it is. I’ve had this a little with my current chemo, feels like your fingers are falling asleep. Next up is 3. muscle and bone pain. This one is a little scary because both of my oncologists have made sure that I have pain killers still from my surgery for this in case I need them, and those are no joke. I’ll take an antihistamine to try and help with this and then advil, but we’ll see how it goes. I’ve had some of this with the shot I get after each chemo treatment because that shot makes your body produce more white blood cells which is in your bones and causes achyness, the antihistamine has solved this which is promising, but again, no guarantees.

I’m going in hopeful, but low expectations. Hopeful that I’ll be like most people around my age and it will be easier and I won’t have any allergic reactions or anything really bad, but knowing that based on the snowflake theorem anything can happen.

The other main thing I am really really hoping besides the allergic reaction and nausea is that my nails don’t fall out. Yeah we can all cringe together at that sentence. ugh. So that’s another thing that this chemo can cause, but doesn’t on everyone, weakens your nails and they can come out. So I have to keep them clipped short (normally I take pride in long healthy nails) and keep an eye on them because that will hugely suck and frankly I think I have enough problems. I also asked about taking extra calcium, but he said it doesn’t help, it’s just a spin on the reaction roulette wheel and hoping that my number doesn’t come up.

I’d be totally down if the rest of the hair on my head falls out (sporadic spikiness is lame on multiple levels), but hoping that I can continue to keep my eyebrows and eye lashes for my own vanity and so I’m less of a cancer billboard. I did get a very nice hug from the guy that worked at J.C. Penney’s down here when I was wearing what I consider my incognito hat. Apparently it doesn’t fool people that have gone through it or had their spouse go through it like he did. It was such a Southern moment that I didn’t mind it at all and was amused, so touchy feely down here.

So I’m scheduled for 8am tomorrow for dose number one and we’ll see how it goes. I’ve got the rest of the week cleared and am going to order some chinese food for lunch so I can get a last good meal in just in case and because I’ve missed delivery food.

Losing My Hair

I got a very short buzz cut last Tuesday because my hair was starting to fall out in clumps when I showered. I had gotten my long hair cut short to make this easier, but honestly I don’t think there exists a way to make this step easy. I had originally planned to do it when my two aunts were in town so I could do it with a posse and try to not make it so bad. There’s the saying “Life is what happens while you’re busy making other plans” and it couldn’t be truer than when applied to cancer. I was scheduled to get it cut on Friday and the Saturday before it started coming out in clumps which made me cry. I knew emotionally I couldn’t handle almost a week of doing that every day so I called and was able to get an appointment for Tuesday morning.

I skipped washing my hair for the next couple of days so I didn’t need to see it filling the drain each day. Tuesday I washed it since I was getting it cut and it was just as bad and hard so I knew I made the right decision. My Dad and A. came with me and I went again to Stephanie who had cut my hair for me in the beginning of all of this and has done for other women before. I wish it could have given me the empowered feeling that cutting it off to begin with had, but it just doesn’t work that way in this stage of the game.

In this stage of the game it was another thing reminding me that I’m not in charge and taking control away from me. It’s also really hard losing hair. It’ll grow back, but not for a long time and it also won’t be the same when it does per every account I’ve read. I’ve always viewed my hair as a big part of my self expression and spent thousands over the years on cutting it and dying it (I’m not high maintenance, it just adds up after 30 years guys). I’ve spend hours braiding it, straightening it, smoothing it, etc. I’ve had blonde streaks, pink streaks, purple streaks, and now blue streaks. I’ve had it down to the middle of my back and now as short as a faux hawk. My hair matters to me and having to lose it really really sucks.

I cried when we shaved it. I really didn’t want to because I was/am sick of crying, but again, lack of control… A. and my Dad both shaved the initial pieces. I had them do it because it made me feel like I was less alone in this. I instructed my Dad to not go anywhere near my ears because he was fired as my little brother’s barber when he clipped an ear with the scissors. It wasn’t pretty. The clippers had a good safety guard though so no nicks. My scalp was sore and really sensitive so it was unfortunately a little painful getting it buzzed.

So we cut it to a super short buzz cut and it’s been steadily falling out since then. Annoyingly though it doesn’t fall out evenly or in any sort of order. Cut me a freaking break. Like isn’t it bad enough I’m going bald? Do I really need a bald patch on the back of my head? About as much as I need a third boob. So anyways there’s no photos at this point in the game because it’s just too damn bad and I really don’t need a permanent internet record of the brief period when my head looked like a quilting accident. You long distant people will just have to wait for when I’m bald.

The good news is that my head is totally round and pleasantly shaped. Who knew? No weird dents or bumps so I feel like I’m pulling this off to the best of my ability. I also have my great blonde wig for when I feel like looking like I have real hair and a few little caps when I feel like Rhett Butler aka I don’t give a damn.

To add to the weird list of things that I never thought I would do but have done now thanks to the big C: 1. I’m moisturizing my scalp because it’s really dry with the hair falling out. Hoping this gets better once I’m done shedding 2. Based on other ladies recommendations who have gone through this, I’m using a lint roller on my head to pick up all of the hair shedding. Totally weird, but totally works.

Comparisons from people I love and still love, but haven’t helped:

1. Sinead O’Conner: I read a lot of celebrity gossip. She’s really bad looking these days and totally nuts. No thanks.

2. G. I. Jane: Yes I am a white girl with no hair, thanks.

3. My brother: I’m grasping at my femininity right now with all of this, comparisons to any dude are not helpful.

Cutting it off has helped because it’s not nearly as traumatizing to have little hairs come out compared to seeing the shower drain filled with my hair. It’s also easier each day as it becomes less of a shock to see myself in the mirror. I still forget that it’s gone, but it’s less shocking when I see myself. I feel like I have a neon sign on my forehead when I go out with a little cap or nothing on, that says “CANCER PATIENT”. I’m trying to get over this and hopefully I will eventually, but that has only gotten minisculely easier each day. I still stand by my wishes that I don’t want anyone to shave their head. It would make be feel better to see A. get his head shaved because it would make me feel less alone in this, however I would want it to grow back immediately which isn’t possible so no dice on the shave. I don’t think about my baldness most of the time and I would have to think about it every time I saw his and I just don’t need that kind of reminder.

As with most things, someone else has already written about this and done it better than me: I recommend a read

Today I’m sitting in the chair getting my second to last AC chemo. One more and hopefully food and I can continue our lifelong love. Sometimes the third and fourth of these are the worst per my fellow BC club members so wish me luck. I’ve got some homemade chicken noodle soup waiting for me at home and I’m re-reading the Stand to prepare for the post ebola world.

A Real Look At Chemo

It’s 3:45am and I have to get up at 8am and I haven’t slept. This is my third or fourth night of insomnia (starting to lose track) due most likely to the more scary of the anti-nausea drugs that I’m on. I can’t stop taking the drug because one of it’s more scary attributes is the very stern “take this exactly as prescribed, don’t stop early, blah blah blah.” I unfortunately fucked up and forgot to take it until almost 10pm (I usually try to take it around 5 so I can try and sleep) so I’m pretty screwed. Luckily I just have one more dose before I start this rodeo again next week.

So some of you may have noticed that I disappeared for a while after chemo, this unfortunately was not because I was cruising through the after effects and too busy to keep in touch. Chemo is in fact the worst thing that has ever happened to me. And I’m just getting started.

After I left my infusion (that’s the fancy way we refer to getting poison put directly in our veins) I went home feeling ok. I had dinner, was hanging out with my Mom and watching season 1 of the Kardashians on Netflix and laughing about how big Kim’s eyebrows used to be, when all of a sudden things went downhill fast.

By 7:30pm I had terrible nausea. I will state that I have not thrown up, but a lot of that is due to the fact that I have a very strong suspicion that it wouldn’t bring any relief. I was also coming off my port surgery and not that far away from my original big surgery that involved my abdomen, so having a very tender neck and abdomen added to my suspicion that throwing up would bring more misery. Plus I was inspired by Ted’s “Vomit Free Since ’93” on How I Met Your Mother, although my own track record is far less impressive.

When I called the hospital the next day to tell them about my predicament they told me they hadn’t planned on calling me until the next day because of all of the anti-nausea stuff they’d doped me up on when I got the chemo. They figured I’d have another day before I’d start feeling bad. Lucky me, I am not on the positive side of this particular statistic. I even emailed a friend of a friend who had the same cancer and chemo as me and she told me she didn’t really have many issues with nausea, so no helpful advice. Special, unique snowflake indeed.

I ended up on three anti-nausea medications to make it slightly less unbearable, but still pretty steady at unbearable for about four days. One of them was actually an anxiety med I already had, makes a lot of sense really that it’s an anti-nausea as well, but adds to the picture of me laying in bed, miserable, and very doped up. The most horrifying aspect to this was that I had no idea how long I’d feel like this and I have 7 more treatments to go. When I left chemo I was cheerful about counting down, laying in bed with the after effects and knowing I had that many to go was terrifying.

I lost around 14lbs in about 5 days from lack of eating, moving, and drinking. My medical goal is to always have a little something in my stomach because it helps with the nausea and to stay hydrated to flush out the chemo poisons as soon as I can. This is very difficult when you feel as bad as I did, usually I could eat a saltine or maybe a couple of bites of a banana and that would be it. For those that don’t know me well, I’m a foodie. I love food. It was a very strange feeling to be so completely horrified by food for so long. A. was a champion. He made me chicken noodle soup from scratch, various teas, very dry scrambled eggs (apparently something I want now), and anything else he could think of to try and get some food and drink in me.

Another psychological game going on through this is that my port surgery area was still supposed to stay dry which is tough when it’s on your neck. I have plastic bandages I could use, but I couldn’t handle the idea of removing the sticky parts from my neck afterwards because I knew it would hurt and I couldn’t take anymore. So I didn’t bathe for 3-4 days. I finally felt up for a very shallow bath and A. washing my hair because I was starting to smell like a thru-hiker. I stuck with this method until my week was up and I could take a shower without concern of getting the steri strips wet. This is an example of one of Cancer’s toughest aspects: reaching your limit. I reached my limit on pain/being uncomfortable in post surgery, but chemo took it to another level. Emotionally and stress wise I’m pretty much at that level too. Cancer humbles you because it is the truest lesson I’ve ever faced on what I can really handle.

But anyways, yes chemo sucks and I’m not having an easy time with side effects. The good news is that Saturday I started eating, but it was weird. I’d mentally think about good food, but physically wouldn’t have any desire to eat. It took until yesterday (Tuesday) for me to think about food and physically feel hungry. I celebrated by eating 1.5 slices of pizza. It was glorious. Today I cheated an ate cooked sushi (sushi is a no-no due to my immune system getting poisoned by chem0) and some fried wontons from A.’s chinese dinner. Tomorrow I’m getting back on the wagon as a good little chemo patient though and eating right. Mainly no sugar and low fat because apparently triple negative cancer enjoys the good things in life just like me. I was dreaming about an ice cream sunday last night. Luckily A. is an amazing cook so even when I can’t eat everything I want, I still eat well. I’ve been comforting myself with some delicious red beans and rice.

Welcome To Chemo Town

In Chemo Town I don’t post for almost a week because I am so laid up. For real.

I was more afraid of chemo than having cancer through most of this and unfortunately I have to say those fears feel somewhat justified now that I’m experiencing it. Like I’ve mentioned before, there’s nothing like breast cancer to make you feel like the special unique snowflake you are, and chemo is no exception. But I’m getting ahead of myself.

First I showed up to chemo feeling ready. I didn’t feel scared and I didn’t cry, pretty big steps forward for me. I took this photo as proof.


I ain’t afraid of no chemo

The day before my first chemo treatment I went through so much with the port surgery and my first therapy appointment that I just didn’t have it in me to be super emotional anymore about it. The good thing was that the pain from the port surgery faded to soreness so that was also a huge relief after reading scary stories online about people who didn’t do well with their ports. The internet is awesome.

The first thing I do with chemo is get my port “accessed” which means they put a needle through the disc under my skin that’s attached to my vein. They numb it first, but I was pretty freaked to do this so close to the surgery of getting it put in. Luckily it wasn’t so bad. The crazy part is that in the instructions that DHMC gave me from my surgery, it is crucial that everyone in the room wear a face mask when they access the port because it’s basically a straight line to major veins and when I was getting my port accessed one of the nurses in the small room refused to put a face mask on. Straight up gave me a “fuck off” look of contempt when I asked her to and also refused to leave the room. How incredible is that? My first chemo treatment, obviously a little nervous, and someone who’s job it is to care for people like me behaves like that. I repeatedly asked her. One of the other background nurses who was not a troll bitch and wore a face mask told me helpfully “at some hospitals they don’t even wear face masks.” Super.

I was enraged leaving that. Enraged, but what can I do? No idea who to complain to. None at all. Also don’t have her name which makes it a bit hard too.

Next up I met with my Oncologist who was great. We also discussed the beginning of an exit strategy to New Orleans, mid November hopefully. We talked about what supplements are ok (Calcium and D) and when I can take my Essiac Tea during treatment. The concern is that there could be potential interactions between the supplements and chemo and going through this we all want me to get the best bang for my buck so to speak out of the chemo.

Next up was the waiting game. My oncologist has to get the results from the blood tests to order the chemo mix and then the pharmacy needs at least an hour to mix it and then I get hooked up. So I started this process around 12:15 and get into chemo at 3pm. It’s a long day.

So I get into chemo and get hooked up, different nice nurse (thank god) and come to the unpleasant realization that what had previously looked like single room transfusions are actually all doubles. Surprise! I at least got the window seat. So they start the transfusion off with a bunch of anti-nausea drugs for a half hour before chemo drugs. I think at least four anti-nausea drugs between pills and liquids. During that time the other seat in my spot got filled by a very old woman who may or may not have had some dementia going on. She started shrieking and literally moaning about how she didn’t want chemo over and over again. I started freaking out. Great start.

It was super sad, but also really not what you need for your first chemo treatment. The staff was able to move me and in my new seat I ended up behind someone (glass separators between “rooms”) yelling at someone on their cell phone about not letting people into their house. This apparently is chemo. Crazy town.

That eventually ended, I got my two chemo drugs and the lady next to me was on her first dose too so we had some camaraderie as we left.

Unfortunately all of that anti-nausea medication lasted until 7:30pm that night instead of the next day or the day after that which is what was expected by the medical professionals. More on that later.

So another update. Some of you contacted me about my registry items being all taken and I’ve been trying to figure out what I need for chemo and how to organize that. Turns out my insurance doesn’t cover doctor prescribed cranial prosthesis (aka wigs) THANKS CIGNA! And those are hard to register for without being able to try on, same with hats, and scarves. So with my friend Maia’s help again I’ve set up a donation page that I will use any proceeds towards these things and if there’s enough left over possibly on some gas money and entertainment for the hours I’ll be spending in bed and in the hospital due to chemo. I’ll be doing chemo treatments every other week until the last week of the year if all goes as scheduled.

The amount set is totally arbitrary, any amount you want to give is awesome and if you don’t want to/can’t that’s totally cool too, just wanted to put it out there:

The 19%

Can you imagine if your doctor told you that you had a 19% chance of dying in the next 15 years? Well I can because that totally happened to me this week. Kind of felt like getting kicked in the stomach by a horse. I assumed by doing all of this stuff that I’d mostly take care of all my risk, but apparently that isn’t the case. I have a 42% chance of dying in the next 15 years if I don’t do chemo, which wasn’t actually something I was considering but hey, fun fact right?

The flip side is that I have an 81% chance of not dying in the next 15 years, but that’s a B- so that’s not the greatest stat I’ve ever heard. I know I shouldn’t focus on this, but you try having someone tell you that and not focus on it for at least a few days. Also this percentage isn’t like a general women with breast cancer thing, it’s based specifically on my age, my diagnosis, etc. It’s tailored to me. It’s my 19%.

Wednesday was a really hard day and so was yesterday and so is today. I’ll let you know when they get better.

Amazingly timed card from a friend (I got it Weds after I got home from the hospital)

Amazingly timed card from a friend (I got it Weds after I got home from the hospital)

The Weds morning appointment was with plastics to see how I’m healing. Like I said, I’m not where I should be with pain which sucks. The doctor tried to refer me to their pain specialists, but they can’t see me for a month. How useless is that??? They should either expand the department or get rid of it all together. Infuriating. Also half of my boob is really hard which is possibly causing the pain and they’re having me go back to PT to learn how to do a massage to hopefully help with that. It also means there’s some early tissue necrosis which is yet another scary thing. The doctor isn’t concerned at this point which is reassuring, but google that shit and you’ll see why it’s scary. Or don’t and save yourself the nightmares. It would just be nice to not have boulders popping up in my next uphill journey, it’s already tough enough. So I go back on Tuesday to see plastic surgery again and PT. I don’t have any infections which is great and they told me I can shave my armpit so that’s exciting to not be rocking the Jenna of the Jungle look anymore. There’s a thick scar in there from the biopsy so it’s a little tricky now.

Next up was the Oncology appointment. I met with my new oncologist who is great, A. and I both really like him. He communicates and takes ownership, two things sorely missing from my last one. I’m pretty pissed at my last oncologist actually and planning on writing a letter to his boss. He was supposed to write me a letter about the necessity for my fertility preservation due to the chemo needs (IVF) so I can apply for financial aid since insurance doesn’t cover it and he refused to do it and I hadn’t met my new oncologist so he couldn’t do it either until now, so basically just wasted weeks and it could be too late. He also referred me to Dana Farber and said that his staff would work to get them all my info, they didn’t get them any info at all. I’m so pissed because I have cancer, I shouldn’t have to deal with this petty bullshit. I understand that I switched oncologists, but it’s still in his team and it should be about what I need and not about his ego.

Anyways, like I said, A. and I really like the new oncologist. He immediately said he’d take over my pain management and switched up my meds and now I have someone to work with on it. He also got all of my files printed for me to take to Dana Farber which he didn’t have to do. His Fellow was even decent, she was good at explaining what their plan is and answering questions. The only thing I think she may have slipped up on was telling me my 19% thing, I could have done without that, but it was just a miscommunication. She thought I was questioning doing chemo when I was questioning if we could lessen the dosage since my scans are so good.

The recommendation is the standard triple negative recommendation: AC-taxol. Four doses of AC and then four doses of Taxol. I’d do them every other week on Tuesdays, so it’s over 16 weeks and I start on Sept 23rd which is so very soon. Poetically, my last dose would be the last week of the year. Thanks 2014, don’t let the door hit you on the ass on your way out. I have to get a shot the day after each chemo session to help with my white blood count and I’ll do that at the hospital in Randolph which is closer than Dartmouth. Chemo sessions are long. I start off by getting blood drawn and they run some tests on that and then I see my oncologist and he puts together a specific dosage for that chemo session and then I do a 2 or 4 hour (AC=2 and Taxol=4) session of getting hooked up to the poison and anti-nausea drugs. Apparently the younger you are, the more nausea issues you tend to have so they try and be aggressive with the anti-nausea drugs. The other crazy thing is that they’ve had this recommendation since August and my new oncologist was shocked my previous oncologist hadn’t taken me through it. Yet another confirmation I made the right decision voting him off of the island.

I’m headed to Dana Farber on Monday for my second opinion. It is my hope that they will have the same or similar recommendation because that will make things less complicated for me, however I am really looking forward to meeting someone who focuses on younger women and getting her point of view. The reassuring thing my new oncologist told me is that he wants to hear what she has to say and is totally open to adjusting things if their recommendation is different and something I want to pursue. Give this man a gold star already.

So no one has said “you may lose your hair” or “you’ll probably lose your hair”. Everyone has said “you will lose your hair” so that’s the situation. There are a lot of different chemos out there, so your friend who didn’t lose their hair probably had one of those. I’m going in with the knowledge that I’m going to lose my hair. I am not excited about it and I’m going to cry when it happens, but I accept it will happen. I do not want anyone to shave their head. I’ve told my Dad and A. this and I want all of you to hear this to. DO NOT SHAVE YOUR HEAD. It’s not going to make me feel better: it won’t give me my hair back and it will just make me feel more self conscious about how I look by seeing reminders of my bald situation. I’m planning on doing wigs, scarves, and hats. I do not see myself trying to own the whole bald thing. I’ll put together a registry on that once I sit down and figure out what I want. It’s one of those personal things where it obviously is a morale booster for some people going through this, but it’s just not for me. Keep your hair. Cherish it.

When doctors walk you through chemo they have to tell you every terrible thing that can happen to you, just like any other medical procedure. When I sat through the bad things video for lasik it made me want to run screaming from the room (I got it anyway), this was worse. Terrible things that probably won’t happen, but could happen: very difficult to treat leukemia and heart problems.

Much more probable bad things: exhaustion, chemo brain (loss of ability to multitask/short term memory), joint pain, muscle pain, and other delightful smaller issues. As if these things weren’t shitty enough, most of them take years to disappear, you don’t just bounce back from chemo.

I’ve never not wanted to do something more than I don’t want to do this. I do not consider this brave, brave would be taking the chance that I might be fine and not doing this. What I’m doing is the inevitable and it sucks and makes me feel powerless.

Hopefully I’ll be lucky and chemo won’t hit me really hard, but there’s no way of knowing until I do it. It’s easier for me to go in with low expectations because it’s just too hard to expect good things and get bad news at this point. It’s much better for me to expect bad things and then get good news or meet my expectations. Disappointment hits me really hard these days. I know I sound like Eeyore, but I’ve never been an optimist and getting cancer at 30 isn’t really the recipe to turn me into one.

If you’ve been thinking that you should write me an email, the week of the 22nd is the week to do it. I’m going to have time to kill while getting my treatment (hours) and there’s a good chance I’ll be out for the count for a few days that week and it would be lovely to get some long emails about what’s going on in non-cancer world. I’m a big fan of non-cancer world.

So important upcoming next steps: Monday I go to Dana Farber for my second opinion, Tuesday I go to “Chemo Class” with A. and Mom to learn all about chemo (should be super uplifting), 22nd I get my port put in (apparently sucking on jolly ranchers are the secret to not being totally disgusted when they clean it), 23rd I start chemo.

On a nicer note, I went to the Tunbridge Fair with Mom and saw the draft horse pulling which was cool. Tomorrow I’m going again with A., my cousin, and my Dad to see the oxen pulling and all the other fair creatures. Life Goes On.

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Mom and some of the horses

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Me with two new friends

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