Sunday, April 11, 2021

An Update on Cancer and Daily Life


It’s been a while since I’ve shared what’s been going on with me medically. I forget as I live with this disease day in and day out that many people have no idea what it’s like to live with terminal illness. In some ways it’s harrowing, and in other ways it’s just what is considered normal for me now and I don’t think much about it. Here are a couple of days of significance over the last few months:


January 19, 2021

Today I was at the doctor for 6 hours. That’s a short day for me. Within that 6 hours I had three different appointments, had two CT scans, had 3 needles stuck in me (one shot, one blood draw, and one IV for a scan), had a plastic mask molded to my head in preparation for radiation, and waited for 2 hours in one of the intake rooms. On the bright side, I got to watch both the series finale episode and the series premiere episodes of Friends, plus two others, which were on the waiting room TV. But lordy, y’all - my patience REALLY wore thin. I found out later that the computer scanning systems were down, so they had to type out by hand anything that would normally be scanned.

The appointments today were to address two major things happening to me:

1) My neurosurgeon discovered four more (small) brain tumors two weeks ago. These are called brain metastases - cancer that traveled from the breast and metastasized into the brain. My treatment for this is stereotactic radio-surgery to deliver radiation to those specific parts of my brain with the tumors. And today was a “simulation” day when they took a bunch of scans and created a plastic mask that’s molded to my head which will keep it still while they do the treatment. That mask is no joke - it’s hard plastic that covers my face, head and neck (everywhere except my eyes & nose. VERY uncomfortable especially for someone with claustrophobia.) 

An example of the mask they had me wear


2) My platelets have been dangerously low due to chemo. Low platelets can cause internal bleeding for no reason whatsoever, so it’s really problematic. Here’s a story for you: I had a new nurse during chemo one day, and at the end he said, “Why don’t you get that shot that helps with platelets?” People, I have been dealing with low platelets for over a year and I have never heard of a shot to help! I asked my oncologist about it the next time I saw him, and he had never heard of that shot either. So he called up the hematology department, and low and behold - there IS such a shot, called NPlate. Just goes to show, listen to your nurses and be sure you advocate for yourself. If I hadn’t pushed about how frustrating the low platelets were, I wouldn’t have known that there was a solution. Anyway, today I got tested to see if the shot they gave me last week worked. After chemo my platelets didn’t go up, but they also didn’t go down, so they gave me a new dose today and I’ll see next week if it helped.


Back to now, April 11, 2021:

Three Tuesdays a month I have chemo (when it’s not being canceled due to low platelets.) What was once 6 hour days has turned into 12 hour days. Story time: About 6 months ago I was in the middle of getting chemo when I started to feel itchy on my hands. I thought it was odd but didn’t really think anything of it. Then I started getting a pain in my back, which was concerning. I then started feeling itchy in my mouth, so I got a nurse and said, “I think I’m having an allergic reaction.” All of the sudden all of the nurses started shouting, “Allergic reaction!” And “Carbo! Carbo!” (Which is the drug which was in the middle of being infused with.) They tore the infusion pump away from my IV, dosed me up full of Benadryl, grabbed an anaphylaxis kit, and stood by staring at me waiting to see if the reaction would clear. By this time I had a rash all over my whole body and my blood pressure was through the roof (the activity around me was terrifying!) I got better within 30 minutes, and I soon learned that becoming allergic to Carbo is relatively normal after a certain amount of treatments. In fact, they were surprised it hadn’t happened sooner.

This is such a problematic occurrence that I have since been transferred away from my normal breast cancer center to receive care at a large cancer center within the complex, which is better equipped to handle the possibility of anaphylaxis/reactions. I am now on what they call a desensitization protocol, which involves giving me Carboplatin in very small doses over the course of 6 hours (instead of the normal 1 hour.) This is in addition to the 5-6 hours of prep time and the other infusion I have of Gemzar (a second chemotherapy.) The worst part of it for me is not the time extension, but the fact that they have to give me Benadryl, which I do not respond well to at all. I have to be given Ativan in advance of the Benadryl to stave off some of the worst side effects for me (which is intense muscle twitches and difficulty breathing.) With the Ativan those things don’t happen, but I still get other side effects that seem more intense than normal people’s - I can’t really speak for about an hour (my mouth muscles don’t work properly) and my mind can’t really grasp anything complicated for a few hours after taking it. So I can’t really read or work, I have to just zone out watching TV, or by sleeping. Not the way I like to spend my day.

They recently gave me a brain MRI to see how the lesions were responding to January’s radiation, and the good news is that there hasn’t been any growth of the tumors in the 2 months since. It takes about 6 months to know if the tumors are fully killed, and what’s weird is that the lesions don’t go away - radiation results in dead brain tissue that lasts forever. The great news is that I have had zero symptoms from the tumors, which means that I haven’t lost anything due to the tumors or radiation. This is all thanks to us being vigilant and testing every three months. Unfortunately, the chemo I’m on cannot cross the blood/brain barrier, so my brain is sort of a free-for-all for cancer. I will continue to get tumors and the trick is just to find them early enough so they can be radiated before symptoms show up.

Other than that, things feel pretty great. I don’t have trouble breathing unless my blood counts are low, and this tells me that my lungs are still hanging in there. I don’t have any bone or abdominal pain, which leads me to believe that I’m still clear in my bones and liver. I have scans again on April 16 to see if there’s any progression of cancer anywhere that I can’t feel. And I have to warn you - that day will come when this line of chemo will stop working. Because cancer is smart and eventually learns how to grow in the face of chemo. I’ve been VERY lucky to have been on my same regimen for 2 years - that’s rather unheard of. But there are many other regimens to try when this one stops working.


Ok…


So many wonderful people have asked me what they can do to help as I navigate this devastating disease. So I’ve put together this list of things that I will need as I continue treatment.


Donations:

You can donate via my Go Fund Me account here: https://www.gofundme.com/erin-cronican

I will be using any money raised to help with lost wages as I go through treatment and to handle any medical expenses that might not be covered. It will also relieve some of the pressure off Brandon from having to carry so much while I’m in treatment.


Gifts:

Gift Certificates for massage therapy, facials, pampering
Amazon gift cards
Anything you think might brighten my day (I love handmade/artisan stuff - Etsy, etc)


My address:

165 E 87th Street #3FW
New York, NY 10128


Mail:

I love getting cards and things in the mail, so anything you want to send would be appreciated.



Thank you so much for helping me manage this diagnosis with grace, ease, and a little bit of fun. It means the world to me.




Erin Cronican is a Stage IV breast cancer patient, whose career as a professional actor, producer, 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 and appeared Off Broadway with several plays and musicals. She is currently the Executive Artistic Director of The Seeing Place Theater in NYC. For more information, please visit www.erincronican.com and www.seeingplacetheater.com.


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