Sunday, July 19, 2009

Fun in Tennessee

Captain Adorable and I made the drive from our home in Maryland here to my parents' home in Tennessee. Capt. Adorable was really very, very good on the 8+ hour drive, and has been having ridiculous amounts of fun ever since we arrived on Friday evening. It is cooler here than the weather reports indicated, so we are a little under dressed. Fortunately I brought some warm clothes for Capt. Adorable (but none for me!).

Yesterday we went blueberry picking. Unfortunately, because of a late frost, there was much less fruit than we expected, so what we brought home was a bit sparse. I had planned to bring frozen berries home with me, but that's not going to happen. We did have some delicious blueberry pancakes this morning, though!

While at the picking place I started talking to the owner, who has recently undergone a fight with tongue and throat cancer. He had chemo and radiation. He lost a lot of weight because he was unable to eat as his mouth and throat were terribly sore and full or ulcers. Poor guy! Still, the good news is he is in remission at the moment. He told me that his doctor gave him an 85% chance of being cancer free once treatment was done. A tough fight, a long fight...but a successful one so far. I wanted to talk to him, to ask about his experiences with treatment, how he managed fatigue and nausea, but there were several other people around at the time, so the conversation was a group one instead of one-on-one. I was once again treated to remarks like "Oh, but you don't look like you have cancer."

I feel torn about these comments. On one hand, it is nice to hear that people think I look healthy (or is that what people mean when they say these things? Or do they just mean I look fat?). On the other hand, it feels to me like because I do not fit into their idea of what a cancer patient looks like (skinny, weak, et cetera) that they do not believe that my fight, with all its suffering, is real. One woman went so far as to launch into a story about her neighbor (?) who had blood cancer and did very well with chemo. The neighbor was apparently able to sleep for only one day after receiving chemo and then functioned normally. She told me this in response to my saying that chemo was very difficult and that I am worried about how to manage my fatigue for the next round. Yes, I know it is hard to figure out what to say to someone with a Big Scary Disease, but damn yo, telling me that your neighbor could manage chemo just fine makes it sound like you don't believe me when I tell you how difficult it is for me. And let's be real: how much can you know about your neighbor's cancer journey? Or are you just running off at the mouth because you don't know how to be quiet?

Yeah, I sound pissed and maybe some of you will think I am being too hard on the woman. Maybe you are right. Maybe you are wrong.

I am still worrying about what is going to happen next. I do not want to put Captain Adorable in day care. I know I have talked about this before, and I am sure I will repeat myself here...but perhaps I can get a chemo schedule that will still allow me to be his main care-giver. Vitally imoprtant to me to spend every second with him. Because I love him and he deserves as much of his mama as I can give him. A pre-school experience might be really fun and good for him too, I am not counting that out. I just had hoped not to send him to pre-school till he was 3 years old. Or at all.

I realised a few days ago that I have not taken Lexapro (prescription to keep me from getting depressed) for weeks now. Maybe I feel extra sad and worried because of not having the drug in my body. Maybe I feel sad and worried because CANCER SUCKS. August 5 is coming soon and I feel sure that the results will show that the tumors are growing and I have to go back to chemo. It is so confusing; I am lucky to have good health insurance and a suportive family and the ability to get treatment and fucking hell I don't want any of it. Not like I want to die, but like I don't want to need it.

I'm scared and alone. Again.


mamefati said...

I just want to give you a big hug!
Heres to many wishes for lots of time with your sweet one.

Jocelyne said...

Hi Rose, great post with lots of things to comment on, but I'll choose the "well, my neighbor had cancer" woman. I've recovered from ovarian cancer and was also bombarded with such stories and I tuned everyone out unless they were a cancer patient or caregiver. No one knows unless they're in one of those groups. And just like pregnancy, everyone takes to these horrible poisons differently (and there are soooo many kinds of "chemo"). My chemo was relatively easy. Yours is far far from it. I vote, be as angry as you need to be. (and take the lexapro :)).

Gina said...

When they say you don't look like you have cancer it means, "Damn you look good!" Keep fighting the fight you are doing great.