So small and significant

It's the little moments that matter. I know everyone says that but it's true, those are the magical moments. Unfortunately often times it's those little moments that we tend to forget, but I don't want to!

Someone asked me earlier this week what my favorite thing about being a Mom is right now. I thought about it for a minute and then I remembered a little moment Colin and I shared just a few days ago. Colin loves and I mean LOVES being outdoors and we take walks numerous times a day. It was on one of these walks that there was a small gust of wind (sometime we don't get often being stuck inland) and Colin stopped moving (rare), looked up at me with the biggest smile on his face and his eyes just said "mom did you feel that?" Currently my favorite thing about being a Mom is watching him discover his world and the wonder in his eyes as he does.

Pain

Pain is an interesting topic, one that isn't talked about often because it's unpleasant. For just a moment I'm going to talk about pain and how it saved my life. If my ankle never hurt me that one Friday night Phillip would have never talked to me about going to see a doctor about this little bump. Could you imagine?!? The pain went away and I haven't had it again--the thought of when it would have been discovered is terrifying.

Pain is our bodies way of telling us that something is not right. Our bodies are so smart.

New Mantra

This is going to be the mantra from now on. I know that I am moody, I know that my temper is short and that's not nice. We aren't promised any time here on Earth, clearly as this has shown me so I'm going to make the best of it.

I'm going to smile more, hug more, complain less and love more. I'm going to ditch the negativity and strive for more positivity. 

That is my goal and I'm going to achieve it. 

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!

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:
http://www.gofundme.com/ccsresearch

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. 

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.

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:

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. 

This takes 1:1,000,000 to a whole new level

Today we learnt I have cancer, not any time of cancer but Clear Cell Sarcoma. What is that you ask, I have no fucking clue because there are only about 300. I guess I should be thankful that my doctor knew what it was because from my reading most people are misdiagnosed more often then not. The prognosis is shitty, reassurance rates are high, the 5 year survival rate is around 65%, then the 10 year survival rate is around 30% and then 20 year survival rate is 10%. With those shitty odds I truly believe in medicine, and if I can make it to 10 years who knows where research will be if I relapse. Fingers crossed those researchers find hope for the 300 of us.

The plan, this week will be filled with doctor appointments, on Tuesday I have a PET scan to check for metastatic disease followed with an appointment with a surgical oncologist, then on Wednesday I have to go back into the OR to have a sentinel node biopsy done, then on Friday I have an appointment with a radiation oncologist to set up everything to start radiation the following week.

I will be having 30 rounds of radiation over 5-6 weeks and then Dr Parker Gibbs who is incredible with be resected (removing) not only the tumor but also majority of my Achilles' tendon. How do you walk without your Achilles' you ask, well you don't, he will be grafting me a new one from a cadaver.

We are talking about adjuvant (which means along with the primary treatment, as listed above) chemotherapy. Not sure if we will need it, unfortunately this type of cancer does not respond well to chemo.

Honestly, I am heart broken. The stress I am putting on my family is huge (I know they love me regardless) but seeing them so broken tears me up. All  I want is to be able to raise my son.

My Dearest Colin,

You are the light of my life, my reason for living. I promise to fight with every fiber of my being to be here to watch you grow up. You are going to do amazing things in your life, I know it.

Please always remember to be kind and compassionate. I believe in my ability to fight, I believe in you, I believe in your Daddy and most importantly I believe in us as a family--we were meant to be together for the long haul.

I love you to the moon and back.

Mommy

...

As life always is, we've experienced an interesting turn of events.

Just going about our day to day life, enjoying the amazing little boy in my life when bam…things change.

Back up 4-6 months ago I had a little lump pop up in my ankle--honestly, I thought nothing of it. Initially I expected it to go away, but when it didm't I just figured it was a little lipoma. It is about an inch in length, non painful and a little squishy. 

Well 3-4 weeks ago I started working out again, then on Friday night my ankle was killing me! I decided I need to go see an orthopedist to get a MRI and then probably just get it removed, or so I thought.

I went to the doctors last week, he said it feels like nothing, let's get an MRI to be certain. I said to the orthopedist "that sounds good, but you know as an oncology nurse I'm always a little concerned about lumps/bumps." He said "I completely understand….if there is any suspicion I will send you over to see Dr. Gibbs or Scarborough (orthopedic oncologists)." I literally chuckled a little nervous laugh and told him that would not be necessary because I know who they are, they operate on my patients and seeing them would just be silly.

Fast forward to yesterday. I worked all night on Wednesday night, got off work on Thursday and headed to the (very fancy) orthopedic institute. The MRI tech called my name and we walked to the MRI suite. He asked me all the questions, told me it would take about 45 minutes. We would do the first set of images then he would inject the contrast and finish it up. Ok I get it, where do I sign. Signed away and in we went. Before it even started I got nervous, people who have cancer get MRIs…oh such a silly thought, stop worrying, try to take a little nap. Once the MRI was over I asked him what he thought, "sorry because of HIPAA I can't say anything." Whatev.

I sat in a room waiting for the orthopedic doc for 45 minutes. After 30 minutes someone came in and said we haven't forgotten about you just trying to get a final report written. When he said that, my thought was that can't be good. He saw that look on my face and said, it'll take less then 10 minutes, don't worry. Well 10 minutes later the orthopedic MD came in…he said "I'm going to refer you over to Gibbs office, the differential has given us a few different options including a fibromatosis, synovial sarcoma or giant cell. I think it's giant cell which is benign but this is their area of expertise. " F…really? He said "Do you know Brandi (their office RN)?" I told him yes of course, I know Brandi well, the oncology world is a small little world. He said "ok I'll call her and she will help you make an appt, but don't worry." Freaking really? Don't worry. Ok sure whatever.

Brandi came and picked me up and we joked on our way over to their office (across to the other side of the office).  We made some small talk and then talked about some of these patients that we mutually take care of then she lead me into the schedulers office. I expressed my concern about everything with her and she said sit tight, let me talk to the radiologist to get a better idea what they are really talking about. Bless her. She came back and said they are leaning towards a differential of fibromatosis vs synovial…great. She said we really have no idea until we get the biopsy. She texted me last night and said she talked to Dr. Gibbs and he reviewed the MRI and said he is leaning towards a differential of giant cell tumor vs synovial. Yet again, we will have no idea until we get the biopsy results.

Game plan:

Wednesday 8/28: Appt to meet Dr. Gibbs preop and labs

Thursday 8/29: Biopsy

I'll post again later (maybe not until next week).

Day in the life, Son up to Son down! Photo story