Semantics.

Well, since I have no CT scan results to post, I occupy my brain with a different topic. Finally got my gumption up to call the doctor today to ask for the results and the girl who answered the phone said, okay I'll send a note to Dr. K, but he's not in until Tuesday so he won't be able to give you these results until then. I said oh, has he been out, and she said, yes, he's been out all week...ooookkaay then, thanks.

On to "other topic" - the vernacular of cancer. I am not comfortable with most of the vernacular of this lovely disease and I find myself cringing more and more when I hear certain things. I'm not sure why cancer has such a separate language. Maybe because it's one of the few modern diseases that, while utterly terrifying and devastating and deadly,  actually can be "cured" in many cases. I don't know. But these words that are used - fighter, warrior, survivor some of the most common - they make me uncomfortable and here is why.

I've been around chronic disease all of my life. My uncle, mentioned a few posts ago, developed Type 1 diabetes when he was 9, so it was always around me. I saw the shots every day, I saw insulin reactions, it was all commonplace. He didn't develop many serious complications until I was in my teens but I was always aware of illness. My college ex-boyfriend was also diabetic, what is termed a "brittle diabetic", meaning his diabetes was very difficult to control. I saw the inside of a hospital almost as much as I've seen in the past 9 months for myself. As much as they went through, the pain, the inconvenience, the devastation, they were never called "fighters", they were never "battling" diabetes, no one ever told them "kick diabetes' ass" - they just had it. And they weren't called survivors for every year they stayed alive. I had a cousin who was bedridden as a result of MS from before I was born until he died when I was around 11. He didn't battle MS, he just had it. My grandfather battled on Iwo Jima, but he didn't battle or fight the multiple strokes and resulting dementia that he suffered for ten years. People with ALS or cystic fibrosis or lupus, the list goes on and on, these people are never called fighters - they are always just referred to as having their illness.

Two people  have used the word survivor with me now, one called me fellow survivor and one said I had a great survivor story. The thing is, to me, I'm not a survivor. What denotes a survivor? I haven't been cleared yet, I don't know what's in me or not (see first paragraph), I haven't even finished treatment. When I was at the Komen walk last year, they had the "survivor's tent". I stood there and wondered what the hell does that mean? Do you have to have a Dr's note saying you are cancer-free to be let in the tent? Do you have to be in remission for a certain amount of years? If you are in treatment, you aren't good enough to be let in the tent? If you relapse, are your tent privileges revoked?

When I first told people I had cancer, many of them told me I would "kick cancer's ass". (please, if you were one of them, I'm not singling you out, I'm just giving you my perspective, and my perspective has evolved as I've lived in this world). To me, and I know it's not meant to, but it sort of puts the onus on me right there - I need to battle this, fight this, kick its ass! And it's not just me, that's a common phrase used - I have a high school friend going through her second round of radiation now for a very uncommon type of nasal cancer - some of the comment's left for her by her friends tell her to kick cancer's ass. If this gets one of us, did we not kick ass hard enough? Were we not bad ass enough? Another friend from high school passed away almost eight years ago now from an exceedingly rare type of pulmonary sarcoma - she was an awesome person, very spunky, very bad ass - no matter how much cancer ass she kicked, it was likely not going to be enough. She didn't lose her battle, she didn't not fight hard enough, it just happened. There was nothing she personally could do that she didn't do.

I'm not even a fighter. I'm just doing the best I can with what I have, I'm doing the treatment that most everyone else does. Luckily my tumors responded to at least the A/C chemo. Did I choose to do the treatment where others may not have? Sure, but I don't know their situation and I have no right to say someone gave up or didn't fight because they chose not do do a certain treatment.  The whole warrior lingo, the battling, I just don't like it. If someone doesn't make it does that imply they didn't fight hard enough? They didn't "kick cancer's ass" hard enough? They lost a battle? I know it's not meant with anything but the best intentions and I don't begrudge whatever words people want to use to make themselves feel better, but for me, these words leave a bad taste in my mouth.

Grateful.....

So my husband and I were sitting in Ruby's waiting for our lunch to come before my chemo today, and of course we, like a good married couple, are reading our phones and conversing sporadically. I checked facebook and saw this.....


http://www.babyrabies.com/2012/09/i-tied-a-wish-in-the-wind/


and then I burst into tears while waiting for my salad... and my husband goes what?? what's wrong??? and takes my phone and reads it and says, in typical man style, "oh cool, they went ziplining!"  That's really all I can say about that, because there aren't many words.


Here are some pictures from the Komen walk on Sunday...again, don't really have words for this whole group of people who showed up... for me? It all still sort of boggles my mind.

My husband and son, walking for mama...

 

 

Thank you again to everyone who came out... thank you to those who keep me in their thoughts from afar, thank you for every good wish and prayer that is sent out. Thank you isn't enough, but it's all I can offer right now.

 

Appointments, appointments, appointments...

Days right now are full of appointments. In between now twice-weekly non-stress tests for the baby are my regular OB, oncology, and perinatology appointments, soon to be surgical consult appointment, aaaannndd...my last AC chemo today. Hopefully for a long time, like maybe forever would be nice. Then we start counting down to the big stuff, and more appointments! Ultrasound to measure how much the tumors have shrunk, since there is no baseline mammogram in my case. Full body CT scan after delivery, which is a scary thought to me - my oncologist is optimistic, but truthfully it terrifies the hell out of me. Oh my, quite the busy holiday season, and not in the way I like. But all I can hope and believe in is that at this time next year, I'll be planning a one year old's birthday party, decorating for halloween, going to the pumpkin patch and Disneyland, and looking forward to my favorite time of the year, without the worries and prospects I have to face right now. So much to talk about over the next few weeks, I just need to process a bit of it first.


Went to the Komen walk on Sunday....holy hell, was it hot and humid. One of my husband's co-workers organized a whole group, and it truly amazed me just how many people showed up for me, people I've known for 12 years now and people I don't even know! Thank you so much Karen! (pictures to follow soon)