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.