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Julie’s Fight Like a Girl Story (Sarcoma Cancer)

Sarcoma Cancer Ribbon I have stage 3 Sarcoma cancer and where it is located is very rare; it is in my face. I had surgery about 7 weeks ago. They had to open up the left side of my face and take out my pallet. The surgeons took out the tumor and it was 5.5cc, which is very big. This all happened so fast. On January 3rd, I was thinking my surgery was to remove a cyst. Then I found out it was not a cyst, so I ended up getting every single scan out there. I went in for my main surgery on February 10th.

I’m learning how to do things like  simply swallow and working on my speech, because I’m trying to get a new pallet made. And then of course the back and forth to the hospital all the time. I live about 2 hours away from the hospital. Now I will be starting radiation for 7 weeks Monday through Friday. I will most likely lose my left eye sight.

People are kind and say ‘whatever you need, let me know’, but when it does come down to it, those good intentions seem to fade away. But that is okay because I know everyone has their own things going on. I am self employed and that does not make it easy, because it is not like I still receive a pay check. I have a small business, so now my finances are going to hell and back. I’m just trying to get my story out there and let people know how fast something can happen. Not only cancer but your job, family, friends, and your everyday life; it all just changes in a flash!!!  I am getting a brain scan this week also. I feel like I really have no one to talk to.Friends say ‘well vent to me’, but I do not want to always be the ”downer” in a conversation. Sometimes I just have these breakdowns and cannot stop crying and I ask ‘really? why???’.  I am a good person and I love my job, friends and family. I belong to a great church and yet everything has changed. I have so many questions about this cancer but it is so rare. I really do not have a lot of answers from the doctors. My looks have changed also. My left side is still swollen and my eye drops down. My lip lifted up on the  left side from stitches and my ‘new’ pallet is still not correct yet. So not to be vain, but it is just another ‘change’ in my life.

You may be asking, did they get the cancer? There are still some small cells in the wall and that is why I am doing radiation. I would like to find or start some kind of support group in my area. So much more I could go in to, but I am done for now. I hope this will help someone out and let you know you are not alone in this!!!!!

Julie
Maryland
Submitted 04-08-12

The informational content of this article is intended to convey a personal experience and, because every person’s experience is unique, should not be relied upon as a substitute for professional healthcare advice.

This article is intended to convey general educational information and should not be relied upon as a substitute for professional healthcare advice.

11 comments

  1. I would really love to here how your doing. I have carsonoma and just started this journey. We should like we have had similar storey s about people here. Look up my storey on Caringbrige.org under Judy manning or email me.

  2. Angelina Perez

    Hi Julie ~ I was diagnosed with synovial sarcoma in Oct 2012. My tumor was 7 cm and found in my lower left lung. Since then, I’ve had surgery which the tumor was successfully removed, underwent 6 chemo treatment which were 4 days inpatient (not fun!!) and not am doing radiation. I am thank God cancer free according to my last scan end of March. For that I’m forever grateful. Only 1% of cancer patients are diagnosed with saroma esp synovial sarcoma so I understand how you feel. There isn’t enough research or groups that are focused on my cancer. I’m 36 and have always been very healthy, active and eat healthy. It was a huge SHOCK when I was told it was cancer. I’d love to talk with you so feel free to email me if you’re feeling up to it. Continue to stay strong and FIGHT FIGHT FIGHT like a girl! With God ALL THINGS ARE POSSIBLE!

  3. I lost my husband 19 years ago to large cell lung cancer (mesothioloma now). We were young at 31 and 28 and so were our kids…9,7 and 4. It seemed like we were all alone and sometimes we were…but I learned how strong you have to be to ask for help. People stopped offering because I didn’t take the up on their offers…and I got MAD, but then I realized all I had to do was ask….people came out of the woodwork! Ask darling….just ask…we are all in this fight together in o e way or another. Asking and talking to one another is the Bly way through. LOVE YOURSELF!!! And you can talk to me any day of the week!!

  4. Julie, I know it is hard,I’m a breast cancer survivor, stage 3C. At some point you will have the answer to why you. For now try to find the positive in everything it is really important in your recovery. You have joined a HUGE family of survivors that will be here if you need and the Cancer society has a lot of programs to help so reach out to them. Keep the faith.

  5. Hi Julie, I am a breast cancer survivor, it has been 10 yrs. I understand what you are going through. Will put you on my prayer list. Maybe as more test are done you can get some answers. I will be praying for you and your family and doctors.

  6. Julie, your story really touched me. I am praying for your full recovery. I have been fighting a chronic illness for a long time. However it is not cancer. I do expereience the feelings that you have shared as well though. Send me an e-mail sometime if you would like to chat. Stay positive, and look up. I am praying God will heal you 🙂

  7. I, too, would also like to hear how you are doing. I had stage 3 breast cancer. My friends were great support. My advice to you is if they offer to do something for you, like make dinner, watch the kids, drive you, let them. I am the type that does everything myself. Single parent, work six days, I can do it all. What a friend told me( she lost her husband to pancreatic cancer)..people don’t know what to say or do..but they truely want to help,let them, it makes them feel like they help no matter what it is, and it helps you, too. Try to stay busy, keep life normal. People are laced in our lives for a reason…

  8. Hi Julie! I was diagnosed with breast cancer in 2009. I read your words and it was like you were speaking my words at the beginning of my diagnosis! For me it felt like my world was spinning so fast with too much to all deal with at once! My saving grace was my family and friends. You have to share your feelings and don’t ever feel like you are being a “downer!” You need to have that support to share your difficult days as well as to celebrate your victory days! This is a journey that requires a good “team!” My team consisted of my family, my trust in doctors (which I changed a few through my time if they didn’t feel like they were on my “team”) and friends . . . but only positive ones! Be selective for your “team!” Your TEAM will be as supportive of you as you would be for them if they were in your shoes!

    My thoughts go out to you. I love this quote that was in the cancer clinic. I have written it on the back of my book I take with me to dr appointments and was written by a Sarah McIvor “THE MOST BEAUTIFUL SMILE, IS THE ONE THAT STRUGGLES THROUGH TEARS”.

    Take care my Princess Warrior Friend!
    Laurie Ann

  9. Julie, I just have to tell u this,,I normally dont respond on the fight like a girl club but, my heart is just aching because of what your going through..Long story short..my husband was diagnosed with sarcoma cancer in november of 2011..It hit us like a ton of bricks,,they removed a 25 lb tumor from his stomache,,,Took out a kidney,,,gall bladder,,apendix, & part of his vena cava vain had to be replaced with a donors vain..He was not suppose to make it through surgery but he did…he had in patient chemo for 4 times evry 3 weeks,, then radiation for 33 days…on his last chemo treatment I found a lump on my breast,,Yes,,it was cancer…& for me A partial masectomy..6 months of chemo…& 19 days of radiation..It was 1 heck of a fight for both of us..Him & I are both cancer free..what i’m trying to say is never give up & fight fight fight like u never have…finally we are both back to work & life is feeling normal again..your right,,,sarcoma is a very rare cancer but he has beat it when he wasent suppose to..Please except help when they ask if u need anything ,,It helped us so much..without it I (we)..would not have done so well..I will included you in my nightly prayers…I have a good ear for listening if you need to talk..you can email me.

  10. Hi, Julie. If you’d like to talk to someone going through or done with treatment for sarcoma, feel free to drop by the nonprofit Sarcoma Alliance at http://sarcomaalliance.org. We use Facebook, a live chat , a discussion board and a Peer-to-Peer program to connect survivors. I’m an 11-year survivor of leiomyosarcoma. Best wishes to you!

  11. Hi Julie, my heart goes out to you! You are a true warrior for everything you have gone through!!!! I have been diagnosed with chondrosarcoma in my nasal cavity. When my tumor was first found I had a biopsy done and the results came back as it being benign. Per my doctor this is a very rare area to have this tumor. I have had an endoscopic surgery already and had it removed. It was sent to a pathologist for more testing and came back as cancerous. I was devastated!!! Because of the type of tumor it may re grow and I will have to get surgery again. It will be more extensive than the first. Therefore, I have to follow up now with scans to monitor the area. I try to be positive and pray to god it does not re grow. But sometimes it truly is hard for me to always be positive. I understand your feelings and pray that it gets better for you. I will keep you in my prayers.

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