Hurry Up and Wait!

January 30, 2010

After a week of skirted anxiety I was supposed to begin my chemo on Thursday. Well, on Wednesday I received a call that all of the beds were full and they would call me when one became available. Now my biggest frustration is wondering whether or not to defrost meat for dinner, will it end up going to waste if I get the call?

I had my port inserted on Wednesday. I wasn’t nervous at all actually, over the past year I’ve gotten used to biopsies, surgeries, and the sort. I found it odd that I was allowed to keep on my jeans but wear a gown over them. I thought in the bathroom about how ridiculous I would look if something happened and I had to leave the hospital wearing jeans and a hospital gown. Would people think it was how I stylishly dressed? If it was just a hospital gown it’d be obvious but paired with my holy jeans? Seriously though, I’ve never ever been allowed to keep on my own clothes, something about the room being sterile…perhaps that didn’t matter?

I’m guessing it was because the surgical techs wanted me to join in on their dance party they had going on when I was wheeled into the room. It was a blinding white room with “Castles in the Sky” blaring. I lifted my head to a guy who looked about 25 who looked as if he was trying to use some sort of tool as a glow-stick and simply said “Oh God, I hope you’re not the doctor.”

The rest of the procedure went fine, I was under conscious sedation and vaguely remember babbling on and on about Disney. I recall saying something about hating height sticks, I’m sure the doctor was wondering exactly what I was talking about. I hope it came out clear and he doesn’t think he was saving some sort of perv.

After that, I was sore but fine. My mom and I stopped at Wendy’s and then I went home and passed out. So now, it’s a waiting game. The thing that ticks me off is I know the day I take out meat for dinner will be the day I’m called…

“Laugh as much as you breath and love as long as you live.” – Unknown



January 6, 2010

First things first, my PET/CT scan came back clear. As of right now, my cancer has not spread out of my leg. So, that is wonderful news!

I saw my medical oncologist yesterday and really like him. He has dealt with sarcomas for years and is very well versed in treatment options. He is actually pushing for me to avoid amputation if possible. He’s the first doctor to tell me I have other options, which is of course, amazing. I’ve decided to go with his treatment plan. It consist of 4-6 doses of chemo, each lasting 3 days every 3-4 weeks. I’ll be having my chemo done at St. Joseph’s in Tampa, probably just staying there for the 3 days every month (if insurance will cover it) because it’s a hassle to drive out over an hour, stay there for 6 hours, then drive home for over an hour for 3 days straight. I’ll likely be starting the chemo the week of the 18th. This gives me time to go on my Disneyland trip and get some things prepared at home.

That’s all I know for now. I’ve already ordered some pretty snazzy head scarves and hats. I’m going to look at wigs next week after I get back from California. It may sound vain but, I’m really not looking forward to losing my hair. I love my hair and I think that part is going to be very difficult for me to deal with. Hair is considered to be part of a woman’s beauty. My hair is very long and it is the one thing I receive many compliments about. I never thought I was a person to care too much about looks but the idea of losing my hair makes me very uncomfortable and self-conscious. I’ll get used to it though and perhaps my hair will come back even better than before.

I’d still rather be bald and alive with my daughter. At least I’ll have a chance to try out new hairstyles!

I recently came across this blog again and looked back on my January post “Cancer lurking in the shadows”, what an appropriate title and what irony. I’ve had cancer all along.

For those of you just tuning in that haven’t found out from another source I was diagnosed with a rare form of bone cancer, called telangiectatic osteosarcoma, on December 16th. It’s very likely that I’ve been misdiagnosed since January. The pathologist misinterpreted the results from my January surgery to remove the bone tumor and from the August surgery. On my latest surgery on December 2nd, they had no idea what it was, so they sent it away to Mayo Clinic and wallla! a diagnosis of telangiectatic osteosarcoma. I’ve had a PET/CT scan and a CT of my lungs done but won’t know the results until Monday. Anticipation, anticipation. Well, a more accurate reading of my feelings would be fear and hope with anticipation that everything came out clear.

I’ve been doing so much research on this disease it feels like my head is spinning. I’ve found sarcoma support groups but have been unable to find another individual who has suffered from telangiectatic osteosarcoma. Even my doctors are unaware of anyone. I’ve always been rather unique and enjoyed it but, I think this time I’d prefer to be mainstream. If you have to have cancer you certainly don’t want a rare one and on top of that a rare one that hardly anyone has ever had. It’s a bit discouraging and I feel rather alone.

I find it odd that people don’t start rushing to get things done until they find out they may die. We’re dying everyday yet we put off things and wait until we’re more prepared and better equipped to do them. Well, this news has really put things into perspective for me. I may only be 23 but, my life is now and well, you never know.

My family and friends say I am handling this brilliantly. The truth is, I don’t know how to handle it. I’ve always been one to make jokes, poke fun, and try to be cheery…which is how I’m attempting to handle this. Displaying emotions other than happiness or displeasure has never been a strong suit of mine. I prefer to keep the emotions that make you the most vulnerable, sadness, fear, heated anger all under control and well disguised. Usually, this isn’t a problem. Now, I’m not sure of who I am anymore. I’ve found myself crying at night, hiding in the bathroom or silently sobbing into my pillow. I smile and joke around my friends and family, because they’re there for me and make me remember that I’m still me, they remind me that I’m still funny, witty, loving, stubborn, sarcastic Jamie. But, when I’m alone, I find myself lost and fearful. It’s funny how one word can make you so frightened and unsure of yourself yet, so hopeful at the same time.

I’ve neglected this journal but, I’m going to keep it updated throughout my journey from now on.

Happy New Year to everyone.