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Posted 2015-08-18T18:13:00Z

Chemo, Take Two

So, today was a particularly difficult day. I showed up at the infusion center at 8:45am for my first chemo treatment only to find out that I would need to reschedule. The Cold Caps (which my mother and I have spent a fortune on, out of pocket) were never put in the freezer when delivered to the hospital last week. This means that I would not able to do chemo as scheduled today using the caps - the caps that are a necessity in order to try to keep my hair. Needless to say, this is not the day I was hoping for (though, to be fair, I was also never hoping to join the Cancer Club to begin with.)

In the interest of being very forthcoming with all of you who have been so supportive AND as a way to bring catharsis to myself, this post may seem more of a rant than you're used to hearing from me. No need to send out the calvary - I'm fine and will thrive - but I think you need to know about the underbelly of this disease. It's not all "I'm a Warrior" and "Think Pink" and "You've Got This." Much of the time I feel like I have to hide my fear, anxiety, anger and sadness from people because I don't want people to worry about me. (More about that on my personal blog, where I get more touchy feeling about how cancer affects me as a person, not just the medical updates.)

Cold caps are an experimental treatment for combatting hair loss during chemo. It's not yet approved by the FDA (and therefore not covered by insurance so all costs are out of pocket.) It involves quite literally freezing your scalp over the course of MANY hours in the attempt to keep chemo from reaching the hair follicles, thereby keeping the follicles from releasing (losing) your hair. They have special freezers at my hospital that keep the caps at a ridiculously low temperature, and the caps must be frozen for at least 48 hours before treatment. Since my treatment was to begin on a Tuesday I had to have the caps in the freezer by Friday at 5pm, so I paid for expedited air shipping of a 70lb box of caps to arrive by Friday. They did arrive but when they reached the mailroom no one called the person listed on the label so she could come to pick them up to freeze them. So they sat in a hot warehouse until I arrived today at 8:45am to use them. That's a no-go for chemo today. 

I had a brilliant idea to fix things that was immediately shot down (and for good reason, once policies were explained to me.) Inside the freezers were caps owned by another patient who would not be using them in the next two days. I requested that they reach out to that patient to see if I could use them. Seemed simple enough - I would jump at the chance to help another person. The person responsible for managing my caps refused to call the patient and make the request. I finally asked to speak to my doctor himself, who also refused my request, but he was at least able to tell me why. That patient's doctor is out of town, and no other doctors are allowed to access that patient's records in accordance with HIPAA (Health Insurance Portability and Accountability Act.) To know that I was THIS close to having the problem solved but a policy stood in my way was a big crush to my heart. 

The "good" news is that I was able to move my chemo session to Thursday of this week, which is fine for the long term but really crappy for the short term. First off, I built my schedule this week to have Tues & Wed off, then get back to work Thurs & Fri and do a bunch of theater company meetings on Fri, Sat and Sun. This means that I need to revamp my whole week and will likely lose income in the process (because moving clients means I don't get paid for those days.)

Worse, though, is the fact that August 18 has been the date burned in my brain ever since I got diagnosed. On May 16 (less than 24 hours after receiving my fateful call) I met with my surgeon and we laid out the plan. I would have surgery in June, recover in July and as soon as my shows were over August 2 I would take 2 weeks to travel and get my affairs in order, have another surgery to have my port placed, and then start chemo on August 18. You can imagine how much my anxiety mounted during that time, but most especially after my shows closed. It was no longer "next month" or "once we're done with the plays." It now became THIS month and there was no longer a barrier between life as I had always known it and this new unknown full of needles, poison, fear, and the side effects of cancer treatment. August 18 was coming and nothing would stop it. But I had worked meticulously to get myself prepared physically, logistically and emotionally for August 18 to arrive. I WAS READY. 

So to have that start time pulled out from under me, I felt my whole resolve crash away. The full pain and anguish of 3 months of keeping it together broke open, and I became a blubbering mess in my doctor's office. I have to say, my doctor (Dr Charles Shapiro, oncologist and co-director of the Breast Center at Mount Sinai and leading researcher on triple negative breast cancer - he's kind of a big deal) was amazing with me. He took responsibility without my losing confidence in him, and he made a plan with me that would keep me relatively on schedule. And he opened up personally about his life in an effort to empathize with what I've been going through, which was truly remarkable. I will never forget that kindness.

One of the hardest things about today has been getting all of the dozens upon dozens of well wishes via text, phone and social media and my having to say, "Just kidding! Send this again on Thursday, ok?" I find myself wanting to take care of everyone else when their efforts have been so monumental to me, and I have to admit I'm a little embarrassed to have to do this all again on Thursday. I know that's crazy to admit, but there! I said it!

Something that I'll bet other cancer patients feel but don't talk about is the fear of being forgotten when the dust settles. It's easy to give your support when there's a big event ("Chemo starts now!") but with so many mishaps and false starts, will people begin to get annoyed with my updates and announcements and fade away? Will I lose friends through all of this? My intellect says no, but my heart is just confused by all of the attention and scared that I don't deserve it. That's another thing that's hard to admit, but I've read blogs by other cancer survivors and some have said the same thing. I know I'm not alone there.

So, the bottom line is that I'll be doing all of this again on Thursday, and then I'll be on my regular schedule of every two weeks on a Tuesday though October, and then every week on a Tuesday through January. Thank you for all of your support, your gifts, your donations and your well wishes.

OH - and if you haven't seen, the incredible company Bareburger (where my boyfriend Brandon works) has committed to raising $10,000 toward my treatments and care. Tomorrow (Wed, Aug 19) you can stop by 16 different locations and if you make a donation they will give you free fries. (Please buy something else, though - their food is organic, delicious and has veggie options!)

  

Yes - that's a pig hugging my face as I look away coyly.

 

See a menu here, and here are the locations where donations will take place:

3rd Ave & 34th St (NYC)
57th St. & 8th Ave (NYC)
5th St & 2nd Ave (NYC)
73rd St. & 1st Ave (NYC)
87th St. & 1st Ave (NYC)
LaGuardia Pl. & Bleecker St (NYC)
Astoria, NY (NYC)
Ditmars, NY (NYC)
Long Island City, NY (NYC)
Park Slope, NY (NYC)
Bayside, NY
Great Neck, NY
Hoboken, NJ
Port Washington, NY
Philadelphia, PA
Columbus, OH

If you can't go to Bareburger and want to help, I have a post here with all kinds of ways to contribute

Thank you for everything - and thanks for your patience if I'm not able to get back to you with a personal acknowledgement in a timely fashion. I'm trying!

 

Erin  :)

 

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Comments (6)

  • Steve Lichtenstein
    Steve Lichtenstein

    We are all fine! Your true friends will remain true no matter what. No matter how or what you need to say. Being strong and taking care of others is for when others are hurting. Well now you are hurting and it is your turn to be taken care of and not just by others but also by yourself! It's got to be tiring taking care of the world. We all care about you. Whatever we can do we will!!! So feel free to rant, be sad,happy or anyway that is true you!!!!!

    5 years ago · Reply
  • Barbara Gates
    Barbara Gates

    By now, have you heard of Crazy Sexy Cancer? Love that gal... and love YOU!! Hang in there. I love your honesty. Know that you don't need the extra BURDEN of staying strong for others. I don't need you to be strong, just be YOU!! xo

    5 years ago · Reply
  • Elaine Bennett
    Elaine Bennett

    What he said. But I know how you feel, when my parents were dying I always worried that people would get tired of hearing me talk about it. The truth is, *I* was tired about NEEDING to talk about it, tired of feeling that way. But true friends will love you no matter how long or often you need to talk about a big issue like that.

    5 years ago · Reply
  • Marci Liroff
    Marci Liroff

    Oh Erin, how infuriating!! Hopefully you'll get back on schedule soon. My friend Maggie used one of those blow up neck pillows because the cap is heavy. Keep writing. It's really good!

    5 years ago · Reply
  • Harvey Silikovitz
    Harvey Silikovitz

    First of all, I totally understand your frustration about the delay when you were counting on getting started this morning. As scared as I am of my surgery, I have thought how disappointing it will be if something happens to delay it. Second, know that I for one will never get annoyed with your updates. You can count on me continuing to be there for you (and I feel confident in saying that your many other friends aren't going away either).

    5 years ago · Reply
  • Ellen Ginsburg
    Ellen Ginsburg

    Sorry to hear about this latest hurdle. I know I'd be frustrated too, in that situation. Will keep good thoughts that things go as smoothly as possible on Thursday.

    5 years ago · Reply