Lately, I keep hearing reference to “I had a haircut like that once.” The haircut that doesn’t need scissors; the one where your hair just falls out in clumps, then sticks to you as though hanging on for dear life. It doesn’t want to go, really it doesn’t, but its roots have failed, so each strand ups its static-electric game in a vain attempt to latch on to some other part of you, delaying the inevitable for as long as possible. I remember getting in the shower and running my fingers through my hair. Silly me, I thought I could just rinse out the loose strands. Large clumps of hair came away, clinging to my fingers. It was like petting my cat in the spring, or for you dog lovers, like trying to brush the winter coat out of a Husky or Samoyed. The hair just kept coming and coming. And it sticks to you, for all its worth, in one last ditch effort to avoid becoming the lining of a bird’s or squirrel’s nest, or worse, of fulfilling its dust-to-dust circle of life march much sooner than intended. Its really hard to wash hair off yourself when it keeps falling out. You end up a human chia-pet, but with hair. Those were good times. Really, they were. I can say that because it never occurred to me that my hair would not grow back.
It should, you know, grow back (if you are wondering). I miss my post-chemo curly fuzz. I felt like a baby chick. My husband couldn’t resist rubbing my downy-soft head, nor could I. Now it is back to normal; thick, soft in a coarse kind of way, peppered with gray (less than before chemo, so thanks for that), and now streaked with teal and purple (not thanks to chemo, thanks to Jeffrey).
I saw a woman at the grocery store yesterday with “a haircut like that.” I stopped to chat, opening by asking how she was doing. She looked puzzled, so I offered, “I had a haircut like that once.” Those are powerful words, a pass-code to a not-so-secret club. She softened and we chatted about treatments we had, losing our hair and getting it back, and eyebrows. Her hair is coming back and her head itches (your head itches when your hair falls out and itches when it grows back in). She is sad that it is coming in a little grayer, but she is in the chemo-fuzz faze. Maybe it will get darker when her real hair comes back. She was afraid it wouldn’t grow back at all, so she has that. Her eyebrows are coming in thicker than they were before, so she has that too. Then we touched on hospitals and she changed. I don’t recall where she said she was treated (it was local, but nowhere I recognized), but she suddenly looked bullied and worn out. She wished she had gotten a second opinion before treatment, but she was frightened and just wanted it over with. I can understand that. That had been my first instinct too. I just wanted the tumor out. Thank God for doctors with really, really bad bedside manner or I might have gone with the flow too. She also had reconstruction done, which she is now second guessing. It is a long healing process and she’s is likely not done with it physically, but she seemed really over it mentally and emotionally. The longer the conversation went on, the sadder she became. That was not my intention and I couldn’t see any way to make her feel better, so I wished her well and we both moved on.
As I walked away, I almost felt guilty for my year of pampering and happy-with-my-choices attitude. Almost, but not quite, because it made me realize how important one voice can be. For me, it was my mother’s voice. My mother always got a second opinion if she didn’t like the answer the doctor gave her; she still does. Heck, she gets another opinion on just about everything. It served me well. For me, it isn’t exactly about getting another opinion; it is about finding a doctor, or mechanic, or teacher, or anyone that is going to provide a service for me, that resonates with me, and I can only do that by getting a second, or third, opinion when the first ones leaves me confused, sad or both.
We all deserve to interact with providers who can explain things in a way that we understand, that will take the time to patiently walk us through things until we are comfortable and ready to proceed. I am blessed to have found a team of doctor’s that understood me and what my goals were. It was no accident, I called the new patient desk at Orlando Health and told them about who I am, and they matched me with a doctor that resonated with my personality. Still, it was not an easy process. I met with an oncologist, Dr. Regan Rostorfer, who I adore. Then I met with a surgeon, radiation oncologist and plastic surgeon. Only the surgeon made the cut – Dr. Jeffrey Smith. The other two I continued to interview for. The plastic surgeon became moot, as I elected not to have reconstruction, but I still met with a wonderful plastic surgeon in Winter Park who explained in depth every reconstructive procedure, which was instrumental in my decision to forgo reconstructive surgery. I eventually found an awesome radiation oncologist, Dr. Tomas Dvorak, who explained the nuances of the various types of radiation treatment, how they work, the possible side effects and possible impact to each layer of tissue in its path. It was fascinating and encouraging, and gave me the piece of mind I needed to make a decision and move ahead with a positive, hopeful attitude.
I am grateful for the woman in the grocery store. She reminded me of the gift of choice. We all have it. It is difficult to choose service providers, but I see first meetings as interviews. They get to meet me; I get to meet them. Then they get to examine the problem and tell me what they think, and that part is pretty much pass fail. If I walk away shell shocked or uncomfortable, they have failed and I move on. Even the worst of news can be done with grace and someone can walk away feeling okay. This applies to everything we do. I am baffled by the stories I hear about folks who get their car fixed by mechanics they don’t trust and are convinced they are being deceived. Or people who don’t like their doctors, yet they go to them year after year. Choices, people, you have choices!
The woman in the grocery store also reminded me of the choices I have ahead of me. As the course of my breast cancer changes from treatment to follow-up visits, so shall the course of this blog. My humorous anecdotes about chemotherapy and radiation are a thing of the past. No more blow-by-blow accounts of mastectomies or port surgeries. What stretches ahead are (hopefully) very mundane follow up visits. Five years of them, to be exact. First on the agenda is a bone-density scan next week. Stay tuned for that, I’m sure it will be a hoot and a half!
By the way, thanks to all of you for following and sharing my blog. Writing this blog was cathartic for me these past fifteen months, and that so many people made the choice to read and share it means a lot.