Lori Carey Photography

Wednesday, August 1, 2018

Long Overdue

my feet in hospital bed

Hello, is anyone still here?? This post is long overdue. If you don't follow any of my social media accounts or know me personally in real life, you probably don't know that I was diagnosed with Stage IV de novo Metastatic Breast Cancer last September. I didn't feel like blogging, I couldn't bear picking up my cameras, I couldn't even deal with reviewing any of the hundreds of photos I still need to process. If this post is TL:DR for you, or you don't care to hear about the stark realities of life and death, feel free to skip directly to the last paragraph where I share some good news and get back to business. Much of this is me just thinking out loud, but I feel that I owe an explanation for my extended absence from my own blog. Said too much or said too little, it doesn't really matter and if I don't hit the button to Publish now I'm afraid I'll just stare at this post for another couple of weeks while I agonize over it.

one day of tests
A busy day full of scans.

I have a rare and extremely aggressive type - Inflammatory Breast Cancer - that hit me hard and took me down fast. It spread to both breasts, my chest wall, brachial nerves and I lost use of my right arm, skin, liver and throughout my skeleton and had me fighting for my life in no time at all. Everything was a blur - one minute I was perfectly fine, I drove myself to my doctor's office and figured I would give my husband the news that night over dinner. A few hours later I was being admitted to the hospital with dangerously low blood pressure, blood oxygen, and an erratic heart rate of 208. The cancer continued to spread while I was in the hospital undergoing what felt like every test known to mankind, and they thought I was going to die. They said I'd be lucky to last 60 days. I fought long and hard to get back on my feet. My sister-in-law flew out and stayed with us for over a month because I was unable to care for myself and my husband almost had a breakdown trying to take care of me, the house, and his business. Although the chemo started working immediately, it was still six months before I even felt like I had a chance to pull through (part of that due to an atypical adverse reaction to chemo), and then a few more months of slowing gaining strength with targeted therapy drugs.

My Mom calls this photo "The Free Spirit, The Earth Mother, and The Wild Child". My baby sisters flew out to visit me and fill my freezer with food. They probably thought that they were saying their last goodbyes. I didn't want my photo taken when I didn't feel well, but I'm glad that my sister-in-law insisted because I love this photo. My hair had just started to fall out but I was still able to disguise it with a scarf.

Many people ask me if I had been skipping my mammograms, as if that would have somehow prevented it. I know they ask the question only to make themselves feel better, as if annual mammograms will prevent the same thing from happening to them or their loved ones and maybe that is where I went wrong. Repeat after me - annual mammograms only aid in detection, they do NOT prevent breast cancer and they do not save your life. In fact, it was recently determined that mammograms have been leading to over-diagnosis (Stage 0 DCIS that probably never would become cancerous) and over-treatment. The New England Journal of Medicine published a report stating that up to 85% of women with early stage cancer didn't need the chemo they were treated with.

With IBC the tumor grows in sheets or layers instead of a lump so it is not usually detected by a mammogram. By the time there is any sign of it all, typically nothing more than what appears to be a rash, it is always late Stage III or Stage IV. Just luck of the draw, I've never been known for doing things half way. It's pink-washing to think that annual mammograms and catching it early will save your life too. 30% of all breast cancers will go on to metastasize, sometimes as much as 20 years later. The death rate from Metastatic BC has not changed in 30 years. Too much money being spent on pink ribbon "awareness" campaigns should be directed toward researching a real cure for MBC. I have a lot more to say on that topic but I'll save it for another day. And as far as risk factors go, according to the CDC my only risk factor was that I didn't have children and that I have breasts. I have no family history, I (usually) eat good foods, I'm not overweight, I live(d) an active lifestyle, I didn't start my period early or go through menopause late, I don't drink alcohol excessively (the past ten years I rarely drank at all), I've never been sick a day in my life, my biggest risk was just the fact that I have breasts (men have breasts too, and they can also get breast cancer).

chemo infusion

My doctor said it was most likely growing inside me for years, undetected and symptom-less. In hindsight I often wonder if that is why I felt so fatigued the past few years. I chalked it up to getting older and lazy. When I was admitted to the hospital the main thought that went through my head the first few days was that I finally had permission to rest without feeling guilty, and how good it felt to finally put my head down and not worry about anything, just sleep and sleep. I slept for months, resting and healing, only leaving the house for chemo.

There were many times that I thought about blogging, but I didn't want to bombard my readers with talk about cancer and dying, I didn't want that to be all I was about, but that was the only thing I had going on in my life. I didn't even post on social media much because I didn't have much to say that wasn't about cancer. I wrote beautiful prose in my head, but when I found the energy to grab pen and paper the words disappeared. I thought about creating a new blog just for my cancer story (it's a trendy thing to do these days), but it required too much energy and frankly was another expense that I couldn't justify. Cancer treatment is insanely expensive (my current targeted therapy drugs are $10,000 every 3 weeks with a 20% co-pay at the Silver level, I could never afford it without co-pay assistance. I maxed out on my total out-of-pocket by March of this year) and I haven't worked since I was diagnosed. And as much as I hate to admit it, because my husband and I are both self-employed with irregular income, we rolled the dice and cancelled our health insurance the year before because our "affordable" premiums had sky-rocketed (whoever thinks $18,000 a year for a family of two is affordable needs to have their head checked, especially on top of a California mortgage and cost-of-living. In all of the ACA discussions there isn't nearly enough attention paid to self-employed people who make over roughly $65,000 - the point where subsidies are cut off. I can't even imagine how a free-lancer with kids who makes just over the threshold could possibly afford it.) and neither of us had ever been sick or seriously injured in our lives. It was cheaper to pay cash when we needed to see a doctor. I never was very good at Craps (dice game for those who might not know). This was only time I ever had doubts about my decision to leave my 22-year corporate job with all of the great benefits. Now we have bills from my hospital stay, port surgery, and chemo that my husband will still be paying off after I die. Every penny counts these days. I don't know how we're going to do it, we'll probably end up selling our house, but I have faith that we'll find a way. We always have.

I needed to have a Bard PowerPort put in because my veins went into hiding and the few they could find were too scarred. I'll probably be having infusions for the rest of my life and the port makes it easier. One line goes into my jugular and one into my carotid artery.

But this blog isn't supposed to be about cancer,

It's supposed to be about photography and adventures.

I thought that any photographer worth her salt should be documenting the experience with a camera and I felt like a failure. I managed to snap a few shots in the hospital with my phone one day, but mostly I slept. When I started chemo I knew that all the cool photographers, even amateurs, would take a selfie and post some brave face rah-rah shit, but it seemed disrespectful to me and I decided to not do it. It's different when you are early stage and have a defined end to treatment, they get to ring the bell and celebrate having made it through the god-awful treatment, go home knowing that it's over and they've survived, but I'll be in treatment for the rest of my life. I won't get to ring any bells. Not only did it seem wrong to make light of it, it felt disrespectful to everyone else in the infusion room, many of whom were "lifers" like me. I didn't want to talk about what was going on my head because I didn't want to scare people. It's strange how some people are so scared by the idea of death and refuse to believe that something could be incurable. They want to believe in miracles and false hopes. I prefer to deal with the reality of the situation, and I put a high value on the few friends who were okay with openly discussing things with me. The hardest part for me was seeing what it did to my husband. I didn't (and still don't) know how to make any of this easier on him. The truth is, I think came to terms with things easier than most people would. It made sense to me in a way. My life has been full of more pain and hardship than many people could bear, and this only seemed fitting to the rest of my life. I still remember that my Aunt wrote to me, "After everything you've overcome, this isn't fair.", but I figured why should the end be any different? That probably comes as a surprise, but very few people know anything about my life except what I let them see. This is just another challenge. Life deals you a hand of cards, and you play them best you can. I've really had a great life despite all of the hardships, and best of all I've had the opportunity to spend the last years doing what I love best. It's almost as if that was part of the plan.

I keep kicking around the idea of doing a Stage IV photo project. I tried taking a few photos as time went on, but they didn't have the depth of emotion I was feeling. They felt empty and devoid of feeling. I realized that it was too hard to convey emotion without a human element, and I didn't have the energy to do more than grab a snap now and then with my phone. Well-planned conceptual shots were beyond me; I was lost in a morphine haze and proud of myself when I actually managed to take a shower, get dressed for the day and feed myself. Self portraits were out of the question because I couldn't bear to look at myself in the mirror. I looked like I was dying. I wanted to run from the person in the mirror and I did everything I could to avoid looking at her.

My Bard PowerPort
This is what my PowerPort and scars look like after healing. The black spot near my neck is where my body was rejecting part of it and pushing it outside my skin, but that's just a white scar now. All of the new wrinkles are courtesy of chemo, which is absolute hell on the skin.

But as I felt better and started looking into other cancer photography projects I realized they all fell into one of two groups - either a photographer with early stage cancer documented his/her journey, or a photographer documented another's Stage IV journey. I haven't come across any where a photographer documents their own demise from a terminal cancer - what it feels like from the inside not how it looks to an observer; to see those around you suffering; to write instructions for your husband for things that need to be handled upon your death and how to pay the bills with on-line banking and where you keep the titles to the house and cars; the darkness when your body becomes resistant to a treatment and they're not sure if there is anything left to try; the constant roller-coaster of dealing with side effects of treatments; what it feels like to sign a DNR as your husband watches with tears in his eyes and tries so damn hard to stay strong, what it feels like to be afraid to make plans because you're not sure if you'll be up to it, or even alive; what it feels like to wonder if this is your last anniversary, last Christmas, last birthday, the giggles when my hair started growing back and my husband called me his "little q-tip", the feelings of relief after a good scan. I've come up with a few ideas but they're mostly conceptual and require a good deal of planning, prop-making and set up. Since I started with my phone, do I need to finish with my phone? Can I mix black and white with color images? Is it okay to mix raw and real with conceptual? I'm still kicking it around in my head and I'm not sure if I have the time and energy to pull it off. I also want to put together some memory photo books for my husband before my entire photographic legacy disappears into the ether, and that should probably take priority. But I'm going to give the Stage IV Project an effort, and if I make progress I'll be sure to have posts appropriately labeled for those who don't care for such things and only want to enjoy my outdoor and/or Jeep photography.

Now For The Good News

It's not all doom and gloom. I am one of the 20% of women who benefit from monoclonal antibody targeted therapy, a type of immunotherapy. I'm actually feeling pretty good right now, all things considered, and I've been getting stronger every day. I know that it will only keep the dogs at bay for a while, hopefully a long while, but I'm determined to enjoy life as best I can, while I still can. Bill and I just returned from a ten day camping trip in beautiful Wyoming and I have lots of photos and stories to share. We visited Jackson, Grand Teton National Park, Yellowstone National Park, Bridger-Teton National Forest, and Caribou-Targhee National Forest. Of course we took the Jeep out there and found some beautiful dirt trails to explore! It was a bucket list celebration trip for us because I finally felt well enough to venture out camping and spending time in nature, and we wanted to go make more great memories together. I work at a slower pace these days, but please look for my posts and photos soon!


  1. just awesome, thanks tons for creating a pleasant Post for us...........

  2. I finally clicked to read your blog. What can be said. My words? Well I am thinking of you and am (trying) to send love for your inner well being.