Thursday, May 23, 2019

The Daily Grind of Cancer



It’s been a couple months since I’ve last updated you - I’m sorry I’ve been away for so long! So much has been happening with my treatments that, frankly, I spend most of my time just trying to navigate my health day to day. And the quality of my health can swing wildly within a day, so there are surprises around every corner.

After I last posted, I had radiation for the tumors in my brain. The procedure was much easier than I expected it to be. It was definitely anxiety provoking, but nothing that I feared would happen put me over the edge (coughing while lying down thus screwing up the radiation, not being able to breathe in the mask, feeling claustrophobic, etc.) I was able to get through everything without having to stop, which meant that the procedure was able to go as quickly as possible - it lasted about an hour. I don’t know how well or not the radiation went - they need 3 months for the radiation to take full effect - I’ll be having a brain scan in early June to see if the tumors have been reduced, or at least stopped from growing.

I started chemo in March. For those of you who like to do research on such things, I’m on two kinds of chemo in combination: Carboplatin and Gemzar. Both are done intravenously at the chemo center, and I get it weekly (with a time off every 3rd week for recovery.) For the first few weeks I had nearly no side effects, which was awesome. I was a little tired, but it was as if I weren’t on chemo at all. But my third chemo session, things started going a little wonky.

The first thing that happened was that I noticed that my arms and hands were swollen, so much that my FitBit and rings didn’t fit anymore. After a few days they got way worse, so I went to the doctor and after doing an ultrasound of my arms they found that I had developed several major blood clots in my veins (known as Deep Vein Thrombosis, or DVT), which were making it impossible for my body to drain lymph fluids. Friends, talk about painful. The swelling has been intense - for a while I could barely bend my fingers, wrists and elbows. The pain from having your skin stretched that much is excruciating. My doctors put me on a high dose of blood thinners (which I’m still on) to help break up the blood clots and keep new ones from forming. After about 3 weeks I’ve finally started to see some of the swelling go down - my hands and wrists are now fine but upper arms are still swollen. My ankles are a bit swollen as well. They are painful to the touch, like I’m covered in a giant bruise.

I also have started to get severe nausea and vomiting. I spend most of my days trying to keep the nausea at bay. Feeling this way has become my new normal - never thought I would need to have a barf bag near me at all hours. Add this to my already severe lack of appetite, and weakness & weight loss has become a huge problem for me to manage as well. Eating has been extremely difficult for me. Sometimes the issue is that I’m nauseous and everything makes me want to throw up. Sometimes I’m hungry but once I go to eat I’m full after 2-3 bites. But most of the time I’m simply not hungry and I can’t imagine trying to force myself to eat. There are certain things that I know I’m better at getting down: liquid rich foods like soups, smoothies, fruit, vegetables are easier than carbs (breads, grains) or protein (meats, meatless substitutes). But even knowing that doesn’t help. I’ve lost almost 30 pounds, which on a frame like mine is a lot to lose. I’ve lost a lot of muscle, so I’m not very strong and feel weak much of the time. I’ve lost so much weight in such a short amount of time that my skin has not stayed elastic - it sort of just hangs there in a wrinkled mess. Seriously. Also, may I mention how painful it is to sit for any length of time if you lose the muscle and fat in your butt? Sounds funny, but dear lord my pelvis hurts ALL THE TIME.

I’ve also started getting mouth sores, another side effect of the chemo. They’re basically like canker sores but bigger and right now I have them right at the back of my mouth behind my molars. My mouth is so swollen and painful that I can barely open my jaw, so eating is even more of a challenge.

These side effects from the chemo add to the regular symptoms that I have from the cancer itself, primarily the severe difficulty breathing. The tumor in my chest obstructs my ability to breathe deeply, which makes even walking a challenge. I can no longer take the subway or buses, because the walking to public transportation is too difficult (not the mention the subway stairs.) I take a car everywhere I go, so in order to save money I don’t really go anywhere. Lying down compromises my breathing, so I sleep on the couch propped up on pillows and I use an oxygen tank overnight to make sure my O2 levels don’t get too low while I’m lying down. It’s pretty humbling to be stuck to a machine in order to do something as simple as lie down.

I also found out that I’m extremely anemic - so much so that last week I had to have a blood transfusion. My hemoglobin count was dangerously low, but luckily it only took one unit of blood to get me back on track. I have to say, that was a whole new adventure! To see a bag full of bright red blood hung before you is pretty freaky - I felt like some kind of vampire getting a fix. And it was a color of red I’d never seen blood have before - light and opaque (almost creamy) as opposed to dark and more clear.

I think, though, that some of the most difficult side effects and symptoms are not physical in nature, but emotional. You have to remember - a diagnosis of Stage IV breast cancer is considered a terminal diagnosis. There is no cure. You may be able to push back the disease for months or even years, but no one yet has been able to cure someone of Stage IV breast cancer. Is a cure coming? Maybe. But it’s not here yet. So what my doctors are fighting for is to manage symptoms and to give me a quality of life that’s bearable - they’re not trying for a cure. I was very upset when I first learned of this - one of the only times I’ve cried about my diagnosis was when I discovered they wouldn’t do surgery to remove the breast tumor because my cancer was deemed too advanced for preventative care (which is what surgery is commonly considered.)

This makes contemplation of death very present for me. No matter how optimistic I am as a person, there are realities I have to face if I’m to stay mentally well. I have to face my fears about death and not hide from them. I have to look at the what-if’s without prejudice. Luckily, I have a really amazing therapist who helps me navigate those feelings, but it’s hard to isolate my thoughts about death to the therapist’s office. Because death is everywhere, and when you’re diagnosed with a fatal illness you can’t escape it. Did you know that most TV shows have a cancer storyline in their season (and if the story involves a woman it’s usually a breast cancer storyline)? Do you know how many GoFundMe campaigns are posted on social media daily with heartbreaking stories of love and loss and a broken medical system? These are in addition to every ache and pain that come up for me - I constantly wonder if is this a new tumor that the chemo can’t touch?

This is also the first time admitting this - my aunt is also suffering from Stage IV breast cancer and has been going through it longer than I have, with poor results. I have been watching her with the ominous knowledge that someday I’ll be going through the same thing. Chemo has eradicated her white blood cells so much that her body cannot tolerate chemo. So while she’s still doing radiation to help alleviate the pain from the tumors, there’s no longer anything systemic she can do to keep new tumors from growing. Right now she is bleeding internally due to cancer in her bone marrow, and there’s nothing they can do to stop it. They don’t know how long she has - no one does - but she’s scared and this in turns scares me for so many reasons. Luckily my white blood cells have held up so far but we don’t know if that will continue. And I’m human - I can’t help comparing myself to her and worrying about what’s next for me. How am I going to die? Which organ - brain, liver, bone, lung - will eventually give out because of the tumors? For my aunt it’s her bones. Right now for me it’s my lungs.

It’s morbid. I know. And I’m aware that me speaking about my fear of death make things REALLY uncomfortable for people. The first instinct is for people to say, “It’s ok, Erin. You’ve got this,” because as humans we can’t let ourselves be overcome by fear and the unknown. Letting me sit in my fear seems like being a bad friend. I’ve had people worry about my mental health because of my fears, but not being able to share those fears makes my mental health worse. Because them I’m isolated in a situation that is already so isolating.

Now... there is some good news through all of this. After months of rapidly declining ability to breathe, about three weeks ago I noticed my breathing starting to get better. My doctor says my lungs sound a little more clear. And after this next round of chemo we’ll be able to do some scans and see if what we suspect is true: perhaps the tumors in my lungs (and elsewhere) are shrinking. It’s very hard to contemplate getting my hopes up given all of the things I’ve said above. And some of you might use this news and say, “See, Erin? You just need to stay positive - I know you’ll pull through this.” But here’s the thing:

I need to be able to live in a world with both fear and hope in order to survive emotionally. Not either/or.

I didn’t understand that before Stage IV (metastatic) cancer.

Well, frankly, I didn’t understand a lot of things that have recently become a lot more clear.

None of us know how long we have to live - I just know it more acutely than the next person who can be blindly unaware of their daily health status. I wish I could say that this makes me more ready to seize life by the hands and do all of the things I always wanted to do. But weekly chemo makes that an impossibility, because doing what I want requires energy and time, two things that are hard to come by with so much medical stuff happening on a daily basis. So I’ve learned to value the little things - a day when I’m not nauseous (win!), spending the afternoon with my dog (win!), having enough energy to get coffee with a friend (win!), the ability to nap when needed (win! win!)

So what does this all mean for me day to day? Well, I wake up in the morning and assess how I’m feeling, and then I look at my daily schedule to see what I’m able to accomplish. On days when I feel terrible (and there are more than a few) I humbly have to cancel engagements with my amazingly understanding friends and colleagues. On days where I feel decent I’m able to socialize for short lengths of time and am able to do a little bit of work on the theater company and my various ventures (coaching, design work, etc). I never know day to day how things are going to go but I’ve finally gotten up the courage to schedule my time as though I’ll feel well and then beg my body to do all of the things I planned to do. I get chemo. I go to therapy. Rinse and repeat.

Many of you continue to ask how you can help. I’ve discovered over trial and error that the best way to help is actually financially more than anything. I’ve loved having meals delivered but with my appetite issues I’ve let a bunch of food go to waste, which is terrible. I no longer find need for gift certificates because there’s really nothing I want for. My main hurdle is simply the fact that I cannot work full time so meeting monthly expenses is extremely stressful. If any of you could consider making a monthly gift of even just $5, so that I have something steady coming in each month, that would make a huge difference. GoFundMe allows for this when you make a donation - you can do so here: www.gofundme.com/Erin-Cronican. (EDIT: It looks like GoFundMe does NOT have a recurring feature - so if you want to help recurrently you'd just have to visit again and make another donation. I'm sorry about that!)

Thank you for reading this far, and for being so supportive. I count myself very, very lucky to have you all in my life.


Erin :)


Erin Cronican is a breast cancer survivor, whose career as a professional actor and career coach has spanned the last 25 years in New York City, Los Angeles and San Diego. She has appeared in major feature films and on television, and has toured nationally with plays and musicals. She has worked in the advertising & marketing departments of major corporations, film production companies, theater magazines, and non-profit acting organizations. For more information, please visit www.erincronican.com.

4 comments:

  1. I'm grateful for this update. I think about you often. Rob and I will be in NYC in the end of the summer so if there is anything we can do, please let us know. For me, reading this doesn't make me uncomfortable at all - and even if it did, that should be the least of your worries! It's how you feel and you seem to be handling it as best as you can. Fear/Hope the balance... wow. Yeah. I get it. Sending lots of love xoxo

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  2. Your vulnerability is so powerful. You are such a gift of a human being and continue to make the world such a better place each and every day. All my love.

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  3. I appreciate the update. I really do

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Thanks for commenting- YOU ROCK!


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