This is going to sound a lot like complaining, and for that I apologize. But these things have been weighing on my mind lately and sometimes it helps to type it out and get it out there. As most of you know, I let my hairdresser shave my head last night. I was just going to cut it, but when he started shaving it, a huge weight lifted off. I hadn’t realized exactly how bad my scalp was hurting. I had previously described it as tingling, but it had moved on to burning. As he shaved my head, though, the pain receded. That doesn’t mean I didn’t cry. My hairdresser is amazing and kept me talking while he did it, so I didn’t cry till I was getting ready to head out the door (and on the way home). When I got home, though, it was okay. Little Man said, “Mama hair” and rubbed my head. He hugged and kissed me and cuddled with me and it helped. My frustration, however, is this: please don’t tell me that it will grow back in (thicker, curly, whatever). My doctor has told me that I will probably be on chemo for the rest of my life. Everyone says it will grow back when I finish chemo. Guess what? I don’t expect to ever finish chemo. So when someone says that my hair will grow back when I finish, it’s not encouraging, it’s discouraging. Please don’t do it. Feel free to tell me all about the pretty scarves or hats or wigs I’ll get to wear. But don’t tell me it will grow back.
My other frustration may sound petty, but it is what it is. It’s been bothering me for awhile. I have a rare cancer. And I’m really tired of seeing all the fundraisers for breast cancer. Breast cancer is way over-funded based on the amount of people who actually have the disease. I get it. Breasts are important – both to men and women. The “Save the TaTas” campaign makes me smile every time I see it. I have a dear friend who lost a mother to breast cancer and another friend who survived it. But what about those of us with rare cancers? Did you know that there is no set treatment regiment for what I have? I am currently receiving a chemotherapy that we think might work based on the fact that my cancer is in my abdominal cavity. Can I just tell you that that doesn’t inspire a lot of confidence on my part? I traveled 900 miles to see one of the best doctors in the world for my cancer and even he can’t tell me the absolute best treatment for my cancer. Why? Because my cancer doesn’t receive the funding that other cancers do. And that frustrates me. But what can I do? This is happening, but what can I do about it? I can post about it here or on Facebook, but what do I know about fundraising? How does a person get beyond their personal friends and family and get the word out there? I don’t know and it bothers me.