Thursday, September 19, 2013

Brick Wall

Cancer is like a brick wall, you are going along positive up beat doing your thing then all of a sudden you hit a brick wall...a big, solid brick wall. Today was a brick wall day.

I went back to work last night and it was good until I got home sore and with my seroma bigger then it was the day before. I was looking at sarcoma stuff online and my heart was breaking. Sarcoma doesn't discriminate it ruins little baby's lives, it ruins lives of teenagers, young moms and dad and grandparents--shitty. Just one of those funky days. I hate reading about it and realizing so many children grow up without parents. Lucky for Colin I'm here to stay, just need to buck up, put on my big girl panties and have a better day tomorrow.

To leave on a better note, here are some pictures of my adorable babe from Monday!

Tuesday, September 10, 2013

It's update time

Ok, on with the latest and greatest! Both  my sentinel nodes they sent for path came back cancer free, woo-hoo! My staging is finally completed as Clear Cell Sarcoma Stage 2A, which is non medical lingo meaning it's a shitty cancer (aggressive) but we caught it early and it's localized.

The biopsy that they sent to Texas for cytogenetics came back that it excretes one protein which means targeted therapy is available. We are still waiting on results from the other two but so far that is great. Now my medical oncologist has consulted with this Guru in NY at Mount Sinai who thinks we should hold off on the adjuvant therapy for now. His (and her) argument is that once it is completely surgically resected after radiation they don't know how long to give me the targeted therapy for or what to follow for results. Now if relapse does occur it almost always excretes the same proteins so we will just use it then. I guess I'm ok with that. I mean the prognosis isn't good for this cancer so part of me says do everything we can; however, another part of me says we can't treat what isn't there--this isn't magic. All in all, I'm happy with that.

Today I went to radiation for my simulation and am 4 tattoos fancier, lol. They put the tattoos so that the laser lines up in the same spot every time, they also make a cast of my ankle to insure that as well.

Other than that, my incision is healing. I am going to get into my boot tomorrow (first photography session since diagnosis). Then Thursday and Friday I am heading to the hospital for a chemo conference and then Sunday I am going to attempt a full 12 hour shift back on the floor!

On a side note, my sister decided to put together a fundraiser for research money (she's a little delusional, her goal is $20,000--I figure where there is a will, there's a way and that girl is a Vesey). Since this cancer is so rare there is very little research money directed towards this cancer, but everything we raise will go towards Clear Cell Sarcoma research. If you have a little extra to give, here is the link and if not please continue with your thoughts and prayers because they are working!

Here is the fundraiser link:

Here are some pictures from my healing!

Here is my incision from last night:

And if you look closely you can see the little tiny dot in the middle of the x's. 

Saturday, September 7, 2013

Yesterday was a good day.

Yesterday was a good day.

I met with the radiation oncologist and he answered a ton of questions for me. I am actually going to do radiation two times a day for 21 days instead of daily for 28 days. The long term side effects are less and I get finished up a bit sooner. After radiation I will have 3 weeks off then to the OR I go.

This radiation oncologist was so optimistic, but not blowing wind up your skirt kind of way, more in I know my shit research is research believe me.

I asked him why radiation prior to surgery versus radiation after research and he went into the whole background story about flipping a coin in 1970s and the research that followed. It has been shown that radiation prior to surgery means smaller resection area with clean margins, which equals most mobility post operatively. He told me that he has seen people who have had clear cell, gone through my treatment course and lived a normal healthy life free from relapse.

Honestly after this meeting was the first time I thought maybe this disease won't kill me. I may have to kick this stupid cancers ass right now, it may be a roller coaster of ups and downs until I rehab from surgery but fingers crossed my cancer course will be done--that would be amazing.

Thursday, September 5, 2013

The upward swing

Things are looking up (granted it was a bit hard to look much more down after Friday). I had a PET scan and a CT on Tuesday, thank goodness because they were negative. Yesterday I had my sentinel node biopsy in the OR and we are currently awaiting the results of that--hopefully we'll get a prelim results on Friday. I am bit tore up from the floor up but I'm hanging in there.

When the biopsied my ankle a week ago it wasn't healing because every time I put it in my walking boot it reopened the wound. I'm officially on crutches and am supposed to be non weight bearing on my ankle. I cannot start radiation until this wound heals so now we are looking at 10-14 days. Boo. 

I have another doctors appointment on Friday, it's with the radiation oncologist and we should do the mapping for the radiation treatment the following Monday. Other than that I've met with my medical oncologist, it's actually one that I work she was kind enough to take on a 27 year old patient considering she is a pediatric oncologist. My docs have also consulted this sarcoma specialist up in NY at Mount Sinai--this guy is a sarcoma God, he has been researching sarcomas since I was born. If we need to go up there after my resection then that is what we will do.

The last piece of good news is that there are three proteins that 70% of clear cell sarcomas excrete (70% of them excrete at least one of the three) and if mine does there is a adjuvant therapy I can go on after my resection. They sent my biopsy out to Texas to find out if mine does…fingers crossed.

I'm feeling a bit better, I trust in my surgeon, I trust in my docs--I really think I can beat this.

Here are a couple of pictures of my battle wounds:

Monday, September 2, 2013

PET Scan and PT tomorrow

This has got to be a bad fucking dream. I just want to take my baby and run away--anywhere where I don't have this awful disease. I am so confident that I can beat this but at the same time I feel like it'll lay dormant and sneak back up on me whenever I get comfortable in life again. I just want more time, I want to see my son grow up--he's my shining star.