Depression...

... i got it.

There is so much stigma around mental illness that I hesitate to write this post. In a blog where I've spoken openly about my breasts, among other pretty personal things, I wonder about whether or not it's wise to disclose my history with anxiety and depression. But I never claimed to be wise.

Over the course of this whole cancer fiasco I've come into contact with just a ton of doctors. The D section in my phone contacts is thick. They start, invariably, by taking a medical history. Then at the end they ask if you have any other conditions that they should know about. Which is when I get a dumb blank stare when I tell them that I have chronic anxiety and depression. Which, I think, is pretty relevant information to have about someone who is about to go through hell, but I'm not gonna go on about the medical establishment at the moment.

it's actually not.

Clinical depression is not new to me. I'd been taking medication for my depression for years. Then I self-medicated with booze for a while. Then I self-medicated with vitamins (mega B-stress from whole foods, plus another 400mg of folic acid and a D vitamin every morning was super effective). Then I got a new, fulfilling career and wasn't depressed at all for a while. And then I got cancer. I knew I'd be fighting a battle on two fronts from day 1. But my options are more limited, now.

I didn't want to start up on antidepressants again. Coming off of them is just too hard. And I don't want to take my vitamin cocktail because I'm scared that something will be contra-indicated with some of the poison I'm taking every two weeks and my chemo will be less effective. (I've had this fear since a doctor neglected to tell me that the zinc I was taking to help with wound healing when my legs were all messed up from surgery would interfere with the antibiotic he prescribed me for same, infected wound and my oncologist refused to andminister my chemo for a third time because my stupid wound infection wouldn't go away. I had to google that shit.) I have a stockpile of benzos, but I'm trying to stay off them because of the sexual side effects (going HAM with the disclosures today).

So that leads me to today. I hit a wall with depression on the evening of June 25th. I was going about my business as usual when I found myself sitting alone in a room staring into space mentally listing everything that sucks about me. It's like that sniffle that you know is going to turn into the flu. Depression season is here!

Since then I've tried a lot of things:
crying hysterically
crying quietly
watching a funny movie
crying alone in the kitchen with a cat on my lap and watching a funny movie
fighting with my boyfriend
drinking till I feel better
candle magick
sitting on my stoop
mentally listing all the things I haven't accomplished
crying on my stoop
hanging out in the shed for no reason
napping under the dining room table
mentally listing all the ways I let the people around me down
crying alone under the dining room table until my bf actually suggests I go shopping to try to cheer up
crying at Goodwill and Target
VISINE
texts from mittens
the "everyone hates me" chant
internal dialogues about why they're right
sleeping

Surprisingly, none of these has worked (well, drinking did, but I can't carry on with that). Don't worry, though. I'm taking a Valium, like, now. Writing this post has convinced me of the exigency.

I know I said I wouldn't get on my soap box, but: It totally baffles me that psychiatric care isn't integrated into cancer treatment. Counselling shouldn't just be offered, it should be mandatory. (also, don't worry, I have the phone number of a shrink that I'll make an appointment with as soon as the Valium kicks in.)

Round 3 and Round 4 and Gratitude

I haven't been updating about my infusions. In the time leading up to one, I'm trying not to think about it. I only have a short window afterwards before I start to feel pretty crappy and don't really have the energy for getting a blog post out. Not to mention the chemo-brain that has me thinking every thought three times in a row. I'll presume on your forgiveness.

Cytoxan headache of death. Round 3.

For round 3 my mommy-kins came into town and saved the day. She cooked, cleaned, taxied me to run errands, taught the boy to bake bread, made us a headboard, and listened to me wax poetic about my most gnarly chemo side-effects. Just having her around made me feel peppier.

matching shirts, matching haircuts, and the cute, tufted headboard momma made. 

Yesterday I had my last infusion of adrithromycin/cytoxan. I would say I'm glad to be done with such pain-in-the-ass drugs, but I'm not done. It's the side effects that get ya. I feel fine now, but I won't tomorrow and this time I don't know how long I'll be out of commission. It's a special sort of torture to have to do this to yourself right after you start to feel better. The day before, I went crazy cooking and cleaning and drank an entire bottle of Riesling. I felt like I was about to go to prison (25th hour and shit). I got maybe 3 days of relative health and energy at the end of round 3. I broke. I knew I couldn't face my last infusion of 'Red Death' alone. That's where your other family comes in!

I had only just mentioned to my mom how scared and upset I was about round 4 when I got a text asking what time I need to be picked up and what trashy magazines I wanted. Bridget had already taken off work to come with me. Family helps even when you won't ask. And knows me well enough not to leave any room for me to try to politely decline .

My "I don't have cancer" disguise. 

I'm going to get on my soap box for a second: Oncology doctors and nurses these days like to throw around the line "tell us about your side effects. there's no need to suffer". They like to make it sound like they have a drug for everything that'll get you down during chemo. Having heard this for over a month and finally feeling like I really needed some help in between doses, I came in with my wish-list; Can you help with the crippling fatigue? No. How about the dizziness and body aches? Not really. How about the cognitive straightupdumbness? Sorry. I walked out of there with a mouthwash to help with the sores and a suggestion for a different OTC med to help with bloating and constipation. It's like a drop in the bucket for the things that are actually making my life miserable. I was livid. Stop saying you can help with side effects if, in reality, you can't. Apparently I DO need to suffer and I'd appreciate you just being real with me. Or prescribe me the cocaine and ecstasy that'll really fix me up on those miserable, post-chemo weekends. There's an idea.
Ok. I'm finished ranting.

Bridget looks super cute in my wig!

Round 4 was a fiasco. I won't rehash the entire thing. I got the run-around when I got there, had another substitute oncologist who talked a nice game but ultimately forgot to call in any of my prescriptions, had to sit through an additional hour of pre-meds for my "very positional" (which just means it doesn't work right) chemo port. By the time I rolled out of there I had taken so much Valium to deal with the anxiety and opiates to try to stave off the insane headache I get from cytoxan that I was suuuuper glad to have a ride home.

It's on a freaking pizza tray.

Through it all, I had my shining star by my side. She introduced me to the giant pancake at City Diner which literally gave me a reason to wake up that morning. She let me go on about my boring little life (chemo, my cat, chemo, my boyfriend, cancer, chemo, that one time I went somewhere, chemo, the dog and the cat). Showed me photos and told me stories about babies to keep my mind off things. She bought me an embarrassment of riches in reading materials. She rubbed my back when I cried, held my hand when I almost cried, and even ran to the cafeteria when things were really getting into overtime. She reminded me that this was all for the best, which sometimes you need someone else to say to make you really, truly believe it (at least for a little while). I can never repay the kindness and support and thoughtfulness that Bridget offered me when I so desperately needed it. I'd like to thank her publicly, here, from the very bottom of my heart.

Seriously? Amazing.

Reconstruction

I just watched this video and wanted to share it. I'd heard about Vinnie awhile back and had planned to have him finish off my foobs when the time comes. I'm in the midst of chemo so a lot of my more superficial concerns have kinda gone out the window. I haven't thought a lot about my breasts, their thighmeat replacement lumps, or what will ultimately be filling out my swimsuits in my years of survivorship. But having been reminded, there are some things I'd like to get off my chest (pun intended).

First, if you're recently diagnosed and thinking about what sort of reconstruction you'd like to have, take a step back. You need to ask yourself and your surgeons and hopefully at least one oncologist whether or not immediate reconstruction is worth the risk. Lemme quote myself and give you my HIPAA protected medical history real quick.

Here's what happened with me: I found out that I had cancer. Then, I found out that it was serious. At least the one mastectomy was strongly recommended. I chose to go bilateral because I didn't want the possibility of having breast cancer ever again (although, scientifically, I know it dosen't actually make a difference). I also thought it'd be easier to get a matching pair if my plastic surgeon started from scratch. My breast surgeon gave me the name of two plastic surgeons and told me to pick one within a week. One pitched implants, the other autologous reconstruction.  

There are two options when it comes to breast reconstruction: implants or autologous breast reconstruction. Breast implants are exactly what you know them to be, however, once all your breast tissue is removed you're left with just skin and implant. It's not quite the same as an augmentation. The woman in the Times video had implant reconstruction. Autologous reconstruction, on the other hand, takes tissue from another part of your body (usually the lower stomach) and transplants it to your chest to make new breasts. I decided to go the frankenboob (autologous) route for a lot of reasons. There are costs, benefits, and risks unique to each procedure. I won't rehash them here.  

Because I'm so thin, there wasn't enough fat on my stomach to build two breasts. The transplant came from the back of my thighs. I had healing complications that pushed the start of chemotherapy (desperately needed, lifesaving chemotherapy) back from the recommended ASAP to a full 59 days from surgery. I also got the gift of four disfiguring scars. Autologous reconstruction is done in two sessions. The initial transplant then the revision. Revision surgery happens after all your cancer treatment is complete. My plastic surgeon promises that I'll look normal again when it's all over. Inside the body I have right now, it's hard to imagine. 

This is where I'm coming from when I say STEP BACK. Reconstruction at the time of mastectomy is seen as beneficial for two reasons. First, one surgery is considered better than two in the opinion of the medical community. Second, the patriarchal medical community seems to think that not having breasts (those same breasts that were trying to kill you) for some period of time is more than the fragile female psyche can handle. But what you get initially aren't breasts. They aren't yours. You don't look the same in the mirror or in your clothes. You can't even feel the damn things. I, personally, think that it was an added psychological burden to have to get used to what took the place of my glorious Little Sisters while at the same time getting used to the idea of having cancer. I think that having my breasts simply removed would have made me feel less threatened, like I had taken a step in the right direction. I think I would have felt powerful, the same feeling that leads me to rock my bald head on a daily basis.

However, not having the reconstruction at the time of surgery was never even presented as an option. Not only would "just going flat" have actually saved me some body issues, it still may make a difference in my survival since the effects of the chemo delay won't be known till it's too late, if ever. I may have sacrificed years of my life for dumb little fake titties. That's a hard pill to swallow.

When all this is over and I'm in whatever body cancer leaves me with, I'll probably go to Vinnie's for fake, 3D nipples (the woman in the video had a surgically-made little nubbin that I skipped. I figure: if they aren't going to function, why have them at all? Bra-less 4 lyfe.) I also am going to probably get something pretty to cover some of the scars. But when the woman in the video said that reconstructed breasts are hard for women to talk about, it prompted my contrary nature. If you are recently diagnosed, you're so much farther from "normal" than you think, it's not even funny. There's no rush to reconstruct.

Recuperation

This second round of chemo was definitely rougher than the first. I was out of commission for an entire week. I've been trying to figure out why, when the first time around was such a breeze.

Most women on chemo stop having their period. This phenomenon has lovingly been termed "chemopause". I haven't talked a lot about the possibility of damage to my ovaries and a complete loss of fertility. Or the fact that if my genetic tests come back a certain way, my doctors will suggest having my ovaries removed altogether. I can't face that part of reality right now. And chemopause is usually temporary.

But it hasn't started for me, yet. I got my period normal and on schedule. I think that's what did it. Because of chemo, I'm already anemic. I think that the extra days of bedridden-ness came from the combo of anemia and menstruation.

Thus ends the over-sharing portion of today's post. I've felt pretty great since Friday. I bought a dope bike basket and tooled around town on the silver cruiser my guy handed down to me. We checked out some of Bayou Boogaloo. We even rode bikes to a bar. We actually ended up kind of wasted, which obviously isn't something I should do regularly in my condition, but I can't tell you how fun it was after months of moderate drinking.

We had plans to check out Cypress Creek Landing's campsite in Desoto National Forest in Mississippi on Saturday, but both slept in because of the aforementioned wastedness. We got there with just a couple of hours of sunlight left, but it was still just what I needed: fresh air, sunshine, dirt, bugs, campfire, and a lovely, lazy creek to look at.

My man and his other lady.

I wanted to take more pictures, but I think my phone killed itself searching for signals in the country. Next time I'll take an actual camera. It's only a 2-hour drive up there so I'm sure we'll check it out a few more times before the summer's over.

Wigs

I was holding out hope that I might not loose all my hair during chemo. I'd heard anecdotally that black women frequently experience an overall thinning as opposed to losing clumps of hair. My barber's ex is a breast cancer survivor and he was able to cut her hair through her treatment and keep her looking cute. It's a hope I'd nursed secretly. Alas, it was not for me. I lost my hair in nauseating clumps just two or three nights after my second dose of chemo. I'd put a bonnett on that night and was afraid to take it off in the morning. I shaved my head with clippers that afternoon and my boyfriend shaved it with a razor later. My head is super cold. I'm not a fan.

Not a fan

I've been rocking a white scarf under a straw hat. It's a look that positively screams "Chemo Patient". I'm not a fan of that, either. I miss my hair so much. I hadn't realized how proud of it I was. Or how dependent on it for just basic identity purposes. I felt good with my hair cut super low, but really uncomfortable completely bald. What's even more annoying is that all my hair hasn't fallen out. So, in between shaves, I grow a nice, patchy stubble. Uggghhhhh.

After my trip to the wound specialist yesterday, I felt like some cheering up. So I dragged myself to my local wig store. Picking a wig isn't easy. I haven't had straight hair since I was 17. I feel like nothing looks right on me:



I did finally make a decision and went for function overall. I picked a wig that was lightweight, affordable, and covered my eyebrows (since i'll probably lose them later as well and who wants to deal with that every day?!). My boyfriend says it makes me look like on of the Supremes. I don't want to just throw it on for a photo. I'll post one the next time I get myself done up a little. I try to just think of it as a hairy hat.

Chemo Week 3 Update OR Uggghhhhhh

At this point, during my first round, I was going on about what a badass I must be. So few side effects. So little down time.

A week into my second round and I'm already dreading the third. This dose saw me lose my hair, suffer through two solid days of malaise and nausea bad enough that I literally could not get out of bed, then several days of fatigue and lightheadedness. I'm losing weight (which normally I'd be down with at the beginning of summer, but is generally frowned upon in cancer patients), I'm having trouble falling asleep, and then I have anxiety dreams almost every night.

Today is the first day I feel like I have the strength and the motivation to get up and out. Like a rubber band, I'm snapping into action. Today I'm going to take the cat to the vet, hit the laundromat, clean up around the place, get my bike fixed, then check out some of this Bayou Boogaloo festival (I really just want another cochon de lait poboy).

I'm gonna have to do all that alone cus, while I write my piddling blog posts, my partner in crime is writing (revising) the Great American Novel. He's supportive of me by doing everything while I lay in bed. I'm supportive of him by putting in earbuds while I watch anime all day. We're gonna do some camping up by Black Creek in Mississippi this weekend, though. I'm really looking forward to getting out of town for a bit.

So it's a mixed bag. It looks like basically the entire week after an infusion is shot. But, I only have two more infusions of this particular drug. My mother will be here for the one next week. Her visit is really the only thing keeping me from raw panic. I like that things are moving along and I'm finally getting the treatment I need. But chemo really is the pits.

Round 2: Fight! OR Free Brazilian

The day after chemo feels exactly like what it is. I've been poisoned. I'm sleepy, groggy, can't keep a thought in my head, and am seeing spots. Also, my pee is red. Which I keep forgetting and being alarmed at.

I've also started losing my hair. Basically everywhere. It's alarming. I shed worse than the dog.

My stomach is the size of a walnut.

Also headaches.

I made myself a list of 6 things to do every day to not feel like a failure:

1. Make the bed
2. Bathe
3. Play with the dog
4. Cuddle with the cat
5. Cook for my man
6. Water my garden

I managed 3 today. Try again tomorrow. 

Last time the fatigue only lasted a few days. Hoping to be up and at em by Sunday.

Got Till It's Gone?

I know it's cliche to say, but sometimes the only thing standing between you and happiness is you.
And your perfectly rational fears.
And your underdeveloped ability to share your feelings.
And the fact that the things you're refusing to give the person who cares about you are the things you want from them.
And self-loathing.
And resentment that nobody seems to be able to help with the self-loathing.
The medications that make it all seem ok, but completely dampen your sexual energy.
The rifts that develop when two people who used to revel in expressing themselves physically find themselves in a situation that prevents it.
Feeling self-conscious about your body for the first time in your adult life.
Wanting to ask for what you need, but spitting caustic cynicism instead.
Not knowing how to apologize.
Not feeling like you should have to apologize.
Wondering why everyone doesn't understand what you need from them.
Deciding to withdraw completely.
Not looking him in the eye.
Not caring if he's hurt.
Regretting all that and trying to make amends.
Frustration.
Lack of self-esteem.
Feeling ineffective in every aspect of your daily world.
The whirlpool of negative thoughts that you can't escape.
More medication.

And the moment when the man of your dreams decides that he can't take it anymore. Well. He stuck it out longer than another guy would, right? You're strong. You can do it on your own, right?

No. The thing standing between me and the life I've always dreamed of isn't cancer, but what I've let it do to me and my relationship. I won't let this illness steal one more thing from me. I'm weeping openly instead of raging silently. I'm asking clearly instead resenting. And I'm hoping for the full forgiveness that will truly bring back the closeness that convinced two practical strangers to move in together in the first place.

I guess this isn't the kind of post I usually share the day after chemotherapy, but a cancer diagnosis can have a lot of effects on relationships. Relationships more established than mine (I talked to my chemo nurse about our break-up and how I'm trying to convince him to stay. She helpfully added that she's seen marriages of 20 years fall apart because of cancer. I should add that to my "don't" list at some point). It's my intention to be as honest about what is going on in my everyday life as possible.

Right now, everyday with cancer, I'm putting things into perspective. What is important to me on a daily basis? (snuggling with my cat, cooking for my man, tending to my garden, reading good literature, and looking for ways to be active even though my leg wound is still not completely closed). What role is my illness actually playing in my life? (I feel fine, he still finds me attractive, and when I can't take care of myself, someone will). And what exactly do I want to have when cancer is over? Will I be satisfied if I wake up one day, cancer free and alone? All because I wasn't dating a fucking psychic?

Sometimes a shock to the system is exactly what it takes to get things back on track. I'll be spending everyday with cancer fighting the illness but building with the people around me. And not getting the two confused.

Killin It! (softly) OR Confessions of a germophile

Today is officially 12 days into my first round of chemotherapy. It's right around now that my white blood cells should be at their lowest quantities, leaving my body most susceptible to infection. Also, any side effects from the drugs/poison should be subsiding around now. My body would generally be recovering, getting ready for the next dose.

As far as side effects are concerned, all is quiet over here. I had a few days of serious fatigue right after my infusion, but I'm not ready to concede that they weren't just from stress. Since then, I haven't had any side effects at all aside from food beginning to taste strange. Mushrooms taste rotted. Bread and most cheeses are flavorless. The smell of garlic or red wine turn my stomach about 50% of the time, but I still appreciate the taste of both. I crave pizza 24/7 and sweets are heavenly, but I'm supposed to be aiming towards a more healthy, vegetable-based, nutrient-rich, balanced diet (so I can't sit around eating pizza and haagen-dazs all day).

The "don'ts" of chemo are many and inconsistent, though. My oncologist placed no restrictions on me. My infusion nurse gave me a booklet of guidelines as to how to manage with my weakened immune system. But she also proceeded to provide me verbally with a laundry list of things I'm supposed to avoid:

• Like your eggs cooked soft? TOO BAD!
• Like your steak rare? Can't have that either.
• Hold fruit under running water for two minutes. You've got nothing better to do.
• Hot foods must be eaten scorching hot and cold foods, freezing cold. 
• Don't let your food cool at room temp. Put it straight into the fridge. 
• NO buffets. 
• NO salad bars.
• NO food that's been sitting out: hot, cold, or lukewarm.
• NO blue cheese. 
• NO sushi.
• NO raw oysters.
• NO leftovers more than 3 days old. 
• (At Woodlief) Did you just fill that bottle with tap water? NOT FOR HER!!

With that last command, I was surprised she didn't do a Dikembe Mutombo-style "not in my house" rejection move on the bottle itself. I've got quite the zealous little southern lady in my corner. 

Buuuuuuut. 

Everyone who knows me knows how cavalier I am about food. I've never actually gotten sick from food. Ever. I used to rinse off old, slimy lunch meat, pop it in the micro for 5 seconds, then make a sandwich back in my college days. I'm not someone who naturally thinks about the consequences of eating a little dirt. As a matter of fact, I think it's healthy. I strongly believe our society's obsession with "cleanliness" is causing all manner of health problems. The Hygiene Hypothesis is one of my religious doctrines. 

The rules are proving impossible to remember as I move through my daily life. Just today, I ate my eggs with runny yolks, had a few mulberries straight off a tree during my walk, rinsed my bottles with tap water before I filled them from a filter, and had a dinner of room temperature naan with some haleem I'd made and left cooling on the stove for a few hours. 

Given my track record with taking my own advice over that of more concerned parties, I definitely plan to take a lot of the advice I get from the professionals around me into account. I'm going to work really hard to follow all the rules in all the literature I've recieved. But you have to draw a line somewhere between "this will probably save my life" and "this will probably worry me to death" and not all advice is sound or coming from a place of science.

But I promise to pass the mulberry tree and leave it unmolested from now on. 

Shrine maidens OR My bitches got my back

I'm not religious or a gambler, but I'm hedging my bets.

This idea was conceived at a time when I was feeling super down as a way to positively direct my energy. My boyfriend has a little personal shrine in the study where he does his writing. There is a statue of Kali, Ogun, and the Virgin of Guadalupe. He's explained his selection to me before, but this blog is about ME and not him, so you'll have to ask him yourself. Also, I might have been drunk and forgotten.

So, on a bedridden, down in the dumps, "why me?" kinda day, I decided to make a shrine of my own. I chose healing deities from various spiritual traditions. I decided mid-process to make them all female. I mod podged the Catholics onto candles. They seem to like to hang out there. I bought a bunch of dollar store frames and painted them all gold with this dope, metallic paint I just happened to find at The Green Project. The Tibetan prayer flags were contributed by my friend, Lydia. The progress was spasmodic, but I finally finished it up last night. I used the mantle in the kitchen since it's where I find my creative outlet.

I have little other explanation to add since, like I said, I'm just not religious (or spiritual, I guess). My breast cancer crew (in order from left to right) consists of: Sekhmet, Iaso, Christina the Astonishing, Mariamman, Agatha of Sicily, Mami Wata, and Immortal Woman He. I learned about them all from Wikipedia and you'll have to as well.

Its so hard to say goodbye to my tittays

Today, I'm especially grateful for all the time I spent showing off my cleavage while I still had my original breasts. You may have loved it (and thus join in my sadness) or hated it (and thus, have found the end of your woes). My advice: flaunt em while you got em. About 1 in 8 of us are going to face losing them. Some sooner rather than later. While reconstruction is great, it'll never replace your original pair.

I've put together a little slideshow of me and the little sisters over the years. Just for fun. It's nice to keep busy when you're stressed and don't feel well. Blah.

take a moment to dry your eyes...

On a more serious note, I'd like to share a piece of advice for women facing mastectomy. I connected with a really talented and compassionate photographer, Kathy Anderson, who agreed to do a topless photoshoot before my surgery. You may not ever want to see those photos again, but this is your last chance to take them. I strongly recommend you do. It may seem frivolous. You may have a hard time thinking about your body or your future right now. If you have a close friend preparing for breast surgery, maybe gently suggest that they consider taking some "before" photos. If you're a great friend, do some of the legwork and find a photographer in the area for them. 

She and I are actually working on a series that covers the different stages of reconstruction and healing. Like I said, I may never use them, she may never use them, I may never be brave enough to share them, but I feel better having a history of what my body has gone through in this process. One fewer possible regret. 

Chemo. Round 1, Day 1.

This post is strictly informative. I feel like I didn't know exactly what to expect going in for my first round of chemo and I wanted just the bare bones facts. Plain and simple. I'm going to write those down. But first, my photo project.

My little setup.

 The setup is simple. I bought a photography light and a tripod and a webcam and a backdrop. I just waited until after sundown so that the light would be consistent every day. I also had to turn off all the automatic adjustments in the webcam software. The light may be too bright. I look washed out. But I figure, as long as everything is the same every day, any changes will show up in the time lapse (photography friends, feel free ti chime in here. I don't really know what I'm doing). So, here's photo #1 taken about 5 hours after my first infusion of A/C:

I've got RBF. Can't hide it. I'm actually in a pretty chipper mood.

So here's how the infusion actually went. I showed up to my oncologist's office so he could give me the green light (or not) for getting my first treatment today. He took a look at my little wound and pronounced it good enough. He went over basic details and answered all of my and the boy's questions before I signed yet another release that lists possible death as a side effect (I need to stop reading these forms). He sent me upstairs to the infusion center and I met my nurse (forgot her name) who knew all about me from the two times she had set up all the infusion supplies for me then I disappeared from the schedule when my wound complications were gumming up the works.

After sticking the huge needle into my port then flushing all the lines with saline and heparin (anti-clotting drug) I got a 16 minute infusion of strong, anti-nausea medication. Flushed the line with saline then came the "red death". Doxorubicin (which used to be marketed under the brand name Adriamycin and is the A in A/C therapy). It's a vesicant, which I learned means that if it were to somehow leave my blood vessels and get into any other tissue, it would literally eat away at that tissue. Deadly stuff (hence the name). It's administered by hand over the course of 10 minutes. The nurse got two big syringes and slowly injected it into my port, while drawing back blood frequently to make sure that my blood vessels were still intact. There was a little pause between the pre-meds and this portion because your nurse has to have 10 minutes to sit with you. Nurses never have 10 minutes for anything...

So we survived that then I just got hooked up to a drip of cyclophosphamide (unfortunate brand name: Cytoxan) which is the C half of my A/C therapy. This is administered over about an hour. This drug gave me a headache. I don't usually get headaches, so I can't comment on the magnitude, but I was pretty uncomfortable for most of the infusion. It went away almost immediately after it was finished, though.

Finally, the lines get flushed again. I get a printout of all the drugs I'm on from vitamins to chemo. Then we scheduled an appointment for 24 hours later. I'm on what's called a "dose dense" regimen which means that I'll be getting doses of chemo drugs every two weeks as opposed to every 3 or 4. Generally, after a dose of chemo, your white blood cells bottom out around 10-14 days later. Which is right when I have to go back for my next dose. So the day after chemo, I have to come back for an injection that kinda forces my bone marrow to produce white blood cells to counteract that drop. If I drop too low, I can't stay on my schedule which is not good.

I have a couple of (beginner) pro-tips to add:

• If you're like me and easily chilled, bring your own blanket. The hospital blankets are really cozy right out of the warmer, but they are still paper thin. Next time I'm bringing my airplane blanket and putting the warm ones on top. 
• You gotta bring your own meds. They don't have anything for pain or anxiety or to put you to sleep. Just infusion stuff. I came prepared with my benzos to stay relaxed, but really wish I had a dose of motrin to counteract the headache. Next time, I'll be prepared. 
• I also assumed the hospital didn't have wifi. Which it does. So next time: Hulu/Netflix. You should ask in advance. 

So, there you have it. The ins and outs of your first A/C infusion. I'm no expert, but I have a background in cancer research and am currently learning the ropes of chemo so questions/tips are welcome.

Till next time: here's a shot of the happiest woman in the infusion center

I still haven't mastered the art of the selfie.

I got your warrior right here...

If you found my blog from Facebook or from me going on about my time lapse project where I'll take a photo of my face every day as i go through my cancer treatment, I apologize. This is a venting post. You can stop reading right now.

I feel like so much of what I come across on the internet about having breast cancer is so saccharine. It bothers me for two reasons: am i just not coping as well as everyone else? and now i feel bad that my thoughts and feelings are so dark when i should apparently be finding 'strength i never knew i had' and shit like that.

So i didn't post my first photo yesterday. I decided that the first one would be my first day of treatment. My first day of treatment (my first infusion of the chemotherapy drug colloquially known as red death) was supposed to be today, but had to be postponed. My oncologist decided that there were signs of infection in my leg wound. My wound doctor says there are no signs of infection. The home care nurse I see twice a day says there are no signs of infection. The oncologist gets the final word and today he refused to treat me. He tried to assuage my fears with a recent study that showed that serious adverse outcomes don't start till a delay of 61 days. Today was day 56. And I'm a scientist. I understand statistics. The abstract he printed out just made me feel worse. Especially since they concluded that folks with TNBC (which I've got) should be granted early chemo because they are especially at risk of recurrence and death after delays.

So here's how strong your breast cancer warrior is: i cried like a 5-year-old in the examination room. I cried so bad my doctor came back three times to repeat his explanation. The fourth with a printout of the abstract of the study I mentioned before. I'm not strong. I'm in a shitty situation and I hate it. And that's how I'm supposed to feel.

It's just been one thing after another. My treatment hasn't gone smoothly from basically the beginning. I feel like there are a lot of places where blame could be directed, but the overwhelming feeling is: "this is my fault. I'm going to die of breast cancer in my early thirties having achieved basically none of my dreams or goals or aspirations." There's nothing anyone can say to make that better. But they certainly do try.

I'm tired of being told to calm down. I'm tired of being told not to dwell on the fact that I didn't get my lump checked out for months after I'd discovered it. Or that I underwent an excisional biopsy without seeking a second opinion. Or that I chose to have my mastectomies with immediate reconstruction without understanding the risk of delays from healing complications. I'm tired of being told there's nothing I can do about all that now (and THEN being told that I should avoid stress). I'm tired of it all. I always tell the doctors I come into contact with that I have a depressive personality hoping that they'll be sensitive enough to know that this sort of advice just makes me feel shittier and has the potential to send me into an all out tailspin of despondency and despair. And they can't keep throwing valium and xanax at the problem.

But I can. So today is a drug vacation day. I'll be taking dilaudid naps until I feel like I can face reality.

I don't want to alarm or upset anyone. But I feel like It's important to not sugarcoat how very terrible a cancer diagnosis can make you feel. I read an article recently about how social media has made it seem like raising children is fun and easy when (in between instagram moments) it can be really taxing and frustrating. I feel like the same thing has happened with cancer. We all know it sucks, but those of us who have it somehow have decided as a group not to talk frankly about just how badly it sucks. I just want other people, especially women with breast cancer, to know that you don't have to play the warrior role. This shit is real and whether you're smiling or kicking and screaming, you'll either survive or not just the same.

I just found out that someone has cancer... now what? pt.1

You can skip reading these posts altogether and refer to "How drunk can I get at a wedding?" then basically just replace drinks with being upset/curious/supportive about someone's cancer and you can't go wrong. If you'd like more specifics, I'm going to tell you what I have and have not appreciated in the reactions I've received since my diagnosis.

This post will include the DOs and DON'Ts of Initial Reactions. Future posts will include Keeping Up and Gifts and Cards.

I want to make two disclaimers here:

1. These guidelines may not apply to everyone. I'm mildly neurotic and strongly introverted so those are things to maybe take into account. 
2. These guidelines all have to do with someone who is newly diagnosed. I don't have much other experience, yet. If you're talking to someone who is in their third round of chemo or has been battling for years, different rules may apply. 
3. If you're someone I know and you've committed something I list as an offense, please don't take it personally. You didn't know. I didn't even know until after you did it. I wouldn't be able to give this feedback if my experiences had not been both pleasant and not. I'm not trying to be passive aggressive and make you feel bad. I'm really sorry if I do. 

Let's begin. 

The person you are talking to has just mentioned that they have cancer. For me this is pretty awkward. I'm a very emotionally low-key individual so I'm particularly apprehensive of other peoples reactions. Keep in mind that the person you're talking to has just cleared an emotional hurdle by sharing this information with you. Whether you're their boss or their best friend: just stop, take a breath, and think before you speak. 

• DO: say you're sorry to hear the news. Cancer sucks and you're a human with normal human empathy. This is appropriate. 
• DON'T: immediately go on about other people you've known with cancer, their stories, and especially their outcomes.  By introducing other peoples' stories, you're forcing the person to feel empathetic towards you and these strangers. If you're close enough to the person, these things will come up later. If you aren't, they won't. You don't know where this person is with emotionally processing their own situation. When someone would tell me a story about their aunt who battled breast cancer for two years but unfortunately passed away, I just ended up feeling bad that I was too self involved at the time to feel bad. Try to stay in the here and now.
• DO: react. This person didn't just start a conversation about the weather. This isn't small talk. Even if they brought it up apparently in passing, it's still a big deal. Don't have an episode or anything, but you should show that you've heard them and understand the magnitude of what's been shared. The standard "oh my god" will suffice. 
• DON'T: otherwise mention god or prayer if you don't know if this person is religious or not. Especially don't if you're sure they aren't religious. That's rude. 
• DO: ask specific questions if you have them. Keep in mind your relationship to this person. If you're coworkers "Do you think you'll lose all sensation in your breasts?" may be crossing a line. But specific, concrete questions are easy to answer and will facilitate the flow of conversation. "Will you be able to work through through treatment?", "Are you going to need chemo?", "Where are you being treated?" are all acceptable follow-up questions if you find yourself stumped. 
• DON'T: ask "how are you feeling?" There are a million reasons to avoid this question right now. When i was down this question made me feel like i had to fake being ok. When i felt fine, it made me feel like i had no right. I personally think this is almost never a good question to ask anybody, ever. If you care, be more specific about what you want to know. If you don't then don't be so cliche. 

The answer is probably "All of the above".

• DO: Wish for the best. It's a nice, polite way to say you care and neatly wrap up a conversation about cancer. I haven't seen it done better. When the time comes and you and the person are ready to either end the conversation or move on to another topic, try something like "I really hope everything goes well for you". You especially, at all costs, want to avoid these last 4 DON'Ts at this point. 
• DON'T: insist on exchanging contact information. If you don't already have it then you probably won't use it. Nobody likes an empty gesture.
• DON'T: say "if there's anything I can do..." If you've never done this person a favor before, you're probably not close enough for them to feel comfortable asking anyway. 
• DON'T: assure them that they'll get through this. You aren't psychic. You don't know. Personally, I consider myself a very grounded, realistic person. Cancer is scary because it may very well kill me. I don't think there is a reason to pretend this isn't true. 
• DON'T: tell the person how strong they are. First, you're saddling them with this cliche warrior/survivor persona that they may feel the need to live up to around you. I almost wanted to laugh when folks said this to me. What choice do I have? I either put up with all the crappy pain and suffering or I die. You don't have to be especially strong to make that decision and stick with it. 

Which is a perfect place to stop. Part 2 of this series will cover Keeping Up: when and how and how often to check in with the person in your life who has been diagnosed with cancer. The wedding drinking rules probably are even more applicable then. 

Monies!!

Guess who has two thumbs, breast cancer, and a positive account balance?

This Girl!

Money has always been a touchy subject for me because I'm typically bad at it. I don't want the subject to be off limits here, though, so I'll just fill in a bit on my personal situation.

Here's how I understand my health insurance

• Right Now: I pay the copay listed on my little plastic card until
• Hard Times: I reach some limit and have to start paying for treatment out-of-pocket then
• Manageable?: after I reach a certain threshold of personal expense, I only have to pay for a percentage of the cost (whatever that is).

I may be wrong. Not only am I bad at money, but I avoid things I find overwhelming (and understanding my health insurance falls into that category). Getting a clearer picture of this is on my To Do List. Near the bottom. 

The point is this: cancer means tons of doctors' appointments. While my copay is reasonable at $25 a pop, those add up quickly. I have an average of 1.5 appointments a week. That's an additional expense of $150 a month that I have to factor into a budget that's been reduced by 35% (I receive 65% of my normal pay while on medical leave). Not to mention the one-time three-time expense of the $100 surgery copay. I'm being bled dry. 

Cancer also means being your own social worker, secretary, and advocate. Which you can do, you know, in between crippling surgeries, doctors appointments, depression, and doses of narcotics. So the blame is partially mine that my application for extended medical leave was not actually approved until I had been out of work for about 6 weeks. Which means I haven't collected a paycheck since February 15th. Seeing a positive account balance this morning was enough to tamp down the nausea from my antibiotic.

"introduction" OR "Breast cancer is the new 30"

These things usually start with an explanation. I'll keep mine brief. My name is Morgan and I'm 30 years old. I was diagnosed with stage 3, triple-negative, IDC on February 4th, 2014. Since that day, dealing with cancer has become my life. Before this I had another life where I'd moved far away, started a new career, and met an amazing guy. Before the diagnosis, I thought I might blog about that. Boooooor-ing.

 I'd determined that it might be cool to do a time-lapse of my face every day over the course of my treatment. I've started this blog to accompany that photo project. I'll begin chemotherapy on April 21st. I'll begin taking daily photos on April 20th. You can also expect reflections, venting, advice, and product reviews. It's all quite self-indulgent, but I have cancer so I can basically do whatever I want these days.

Here's a photo of me, the beautiful hair I've already cut off in a fit of frustrated rage, the breasts that have been removed and reconstructed, and the cigarettes that probably kinda helped me end up where I am right now. I may miss the cigs the most.