Heidi’s Story

Site created on June 21, 2019

Hello, peeps. I've been reluctant to start this page for two reasons. One... it brings me back to nine years ago when I started a page for Connor, so writing a page for me seemed to make it all too "official" and real. Two... it has taken six looong months to get all the details. Those of you who know me well understand how much I need to have a PLAN!! Yes, I know it's a problem. :)

My mammogram in December 2018 showed a funky spot on my left side. A biopsy revealed pre-cancerous cells, which were removed with a lumpectomy. The pathology also found IDC (Invasive Ductal Carcinoma), the most common type of breast cancer. Not too concerning since it was grade 1 , or slow growing, and it was ER+, PR+, HER2- (for those who know what that means). If I kept the rest of the breast tissue, I'd need radiation but could take an oral chemotherapy drug with minimal side effects. My surgeon at Northwestern ordered an MRI of both sides to be sure they caught everything. Well, the right side didn't want to feel left out, so something popped up over there and I had another biopsy. This showed IDC as well, but it was grade 3, or fast growing, and it was ER-, PR- and HER2-. Apparently this "triple negative" type is more difficult to treat, so I will need crappy, old fashion chemotherapy through an IV no matter what.

After learning that, the decision to have a double mastectomy was easy. Apparently it was a good decision, because they found more pre-cancerous cells on each side. But we finally received some GOOD news -- the cancer has not spread to my lymph nodes, so I don't need radiation. And the grade 3 tumor was relatively small (1.1 cm), so my oncologist is recommending only four rounds of chemotherapy (Taxotere and Cytoxn), which will be three weeks apart so I have time to recover in between. And I DON'T need a port, which would have required two more surgeries.

Many people told me that recovery from a double mastectomy with reconstruction is not fun. Ummm... they were correct. This is much harder than I thought. Plus my incisions are not healing well, so I will have a procedure to address that next week. Chemotherapy will most likely begin the first or second week of July. Yes, I will lose my hair. I'm already shopping for cute hats, and I'll probably get a wig, too. Should I go blonde?!? And I'm boob shopping, so please pardon me if I look at your chest. I get to choose the size when the plastic surgeon completes the next phase of reconstruction in about six months. Michael and I seem to disagree about what size that should be. :)

Thank you for all the cards, flowers, well wishes and support we've received so far. Huge thanks to my friend, Jen, who set up a Meal Train account (https://www.mealtrain.com/trains/w31dow) before surgery, and my incredible neighbors and relatives who have already brought us dinners. I'll add more meal dates once chemo starts. I'll also add journal updates to this page to keep people informed.

Love and hugs,
Heidi

Newest Update

Journal entry by Heidi Snell

Hello, friends.  I've made it through 3 rounds of chemotherapy.  Lots of people have asked what it's like.  It's different for everyone, but for me, the first couple days after the infusion aren't too bad, probably because I'm hopped up on steroids.  By the way, you should NEVER go shopping while taking steroids.  I went to Bed Bath & Beyond for a satin pillowcase and came home with $200 of stuff I didn't need (most of it went back).  On the 3rd and 4th days, it's like an awful flu with aches and pains everywhere, and I have absolutely no energy.  Days 5-6-7 are a little better but still rough.  During this time I spike a fever because my white blood cell count is low, but I haven't needed to go to the hospital for an infusion - knock on wood!  On Day 8 the fever breaks and I feel much better.  

I've been experiencing neuropathy (numbness and tingling at the same time - it's weird) in my hands and feet.  I get sores inside my mouth and nose.  My eyebrows and eyelashes are almost gone.  My skin is super sensitive, so I can't wear a wig right now.  Found that one out the hard way...  I started a new job right after I recovered from round 2 (I know, stupid, but I couldn't pass it up) so I wore a wig the first week and ended up with hives all over my shiny bald head.  I'm sooo attractive!!   Since the beginning, everything (including water) has tasted metallic.  Except for Chipotle.  Thank goodness for Chipotle!  

My friend and breast cancer buddy, Marie, recently told me, "Chemo isn't for sissies."  She's not wrong.  Sad thing is that what I'm going through is actually mild compared to what I've seen some others experience.  I'm grateful that many people are able to have new targeted therapies with much lighter side effects, but these therapies don't work for everyone.  We still need funding for more research!!! 

My last round will be October 7.  Really looking forward to all this being over.  
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