After my surgery the doctor sent the mass off to pathology. The pathologists were not certain about their diagnosis so they sent samples off to Johns Hopkins pathology for "expert analysis".
The mass in my ankle now has a name and, unfortunately, it's a myxoid liposarcoma.
lipo means fat. So, like fat cancer? Of course I'd get fat cancer. Really? Come on...
Sarcomas are not very common. The ankle is less common. The results are a surprise to everyone involved.
Spencer and I met with an oncologist and received a ton of information to help us move ahead. She recommends I try to get into Johns Hopkins Sarcoma Clinic.
Today I had a PET scan to check the rest of my body. They gave me the results on a CD and I tried to self-diagnose myself but the scans don't make a lot of sense to me. Nuts. (I also tried to self diagnose the tumor when Spencer first found it. I though it was a ganglion or synovial cyst (thank you google) and I was a little off. Spencer's the one who forced me out the door to the Dr.)
Hopefully the Dr will read the PET results to me sometime tomorrow.
My first 2 appointments have been scheduled at JH for this week.
This has been scary for me to deal with. I know everything will be OK, but there's still a process I have to go through and a fear that will hang over my head for the next few years as they continue to check for recurrence. I don't like to say the word cancer. It feels weird.
Since this blog is my journal and I want to remember my own thoughts I've made a list of all the huge blessings that have come to my mind in the last few days.
1. We hadn't thought much about having a baby while we were out here. It just seemed... inconvenient. If I had solely relied on my own personal opinion then I'd be pregnant right now. quinny is so precious and I count this as my top blessing.
2. I live right by one of the best sarcoma clinics in the US and will soon be moving right by another amazing clinic.
3. The sarcoma was in the most accessible, least vascular, most visible place to form a tumor. I'm awesome.
4. This process is totally foreign to me yet the Lord has guided me in my search for doctors and labs. Somehow the lab was the best in the area and my doctor has amazing connections at JH. Not a coincidence.
5. I have access to blessings from men holding the Priesthood in my own home and in my ward. These blessings have brought me comfort, hope and help me focus on and continue with my daily tasks.
6. I have amazing friends and people who have reached out to me. Thank you to the people who sent cards, meals, phoned me, showed up at my door and found little ways to reach out. Thank you so much. My mom is here now keeping my life in order and reminding me of what's on my list. Spencer is my rock. I love him.
The mass in my ankle now has a name and, unfortunately, it's a myxoid liposarcoma.
lipo means fat. So, like fat cancer? Of course I'd get fat cancer. Really? Come on...
Sarcomas are not very common. The ankle is less common. The results are a surprise to everyone involved.
Spencer and I met with an oncologist and received a ton of information to help us move ahead. She recommends I try to get into Johns Hopkins Sarcoma Clinic.
Today I had a PET scan to check the rest of my body. They gave me the results on a CD and I tried to self-diagnose myself but the scans don't make a lot of sense to me. Nuts. (I also tried to self diagnose the tumor when Spencer first found it. I though it was a ganglion or synovial cyst (thank you google) and I was a little off. Spencer's the one who forced me out the door to the Dr.)
Hopefully the Dr will read the PET results to me sometime tomorrow.
My first 2 appointments have been scheduled at JH for this week.
This has been scary for me to deal with. I know everything will be OK, but there's still a process I have to go through and a fear that will hang over my head for the next few years as they continue to check for recurrence. I don't like to say the word cancer. It feels weird.
Since this blog is my journal and I want to remember my own thoughts I've made a list of all the huge blessings that have come to my mind in the last few days.
1. We hadn't thought much about having a baby while we were out here. It just seemed... inconvenient. If I had solely relied on my own personal opinion then I'd be pregnant right now. quinny is so precious and I count this as my top blessing.
2. I live right by one of the best sarcoma clinics in the US and will soon be moving right by another amazing clinic.
3. The sarcoma was in the most accessible, least vascular, most visible place to form a tumor. I'm awesome.
4. This process is totally foreign to me yet the Lord has guided me in my search for doctors and labs. Somehow the lab was the best in the area and my doctor has amazing connections at JH. Not a coincidence.
5. I have access to blessings from men holding the Priesthood in my own home and in my ward. These blessings have brought me comfort, hope and help me focus on and continue with my daily tasks.
6. I have amazing friends and people who have reached out to me. Thank you to the people who sent cards, meals, phoned me, showed up at my door and found little ways to reach out. Thank you so much. My mom is here now keeping my life in order and reminding me of what's on my list. Spencer is my rock. I love him.
12 comments:
You are an awesome young lady.
love, dad
You are an awesome young lady.
love, dad
Love love you!
We love you guys!!
I have been wondering about you all weekend. Sean's parents were here on Thursday night and told us that it was cancer. You are in our thoughts and prayers. Glad your mom is there to help out. And, you are amazing for thinking of all the positive things and blessings you have.
Good to hear more info from you, Allie. We are praying for you and definitely hoping for the best!
I'm glad there are so many positives and that you have recognized all of them. I'm sorry to hear of this trial! We wish you and your family all the best, and I'm glad you have so many people to help take care of you!
My mom just forwarded me an email they sent to the sisters in their ward and I quickly logged on here to see if you had an update. Of course hearing your sweet perspective had a way of making ME feel better. What an amazing person you are. Thanks for sharing your thoughts and being so positive with of course some humor. Love you Allie. Thinking about you tons.
Hi Allie! Aunt Dorene here. Thank you so much for your update! Thanks to Aunt Deanna and her gift of detective work I found out about your recent unfortunate discovery. You are so sweet and upbeat! I know how I feel about the news so you are showing a bravery of champions!! I love you and I too know all will be well because you are just too smart!! My thoughts and prayers are going strong for you in Folsom! XXOO
I was so happy to read this post (what a relief). Allie, it made me cry and laugh! Thank you for being so positive and sharing the blessings you've recognized from the Lord in the midst of such a scary time. It made me think of blessings the Lord has given me so thank you for reminding me to look for His blessing always. You're amazing! Sending my love and friendship!
I have been meaning to contact you since your previous post. Wyatt (my husband) has almost the same exact thing on his ankle and we are currently waiting on a biopsy (should hear tomorrow) and are both kind of freaking out. The oncologist told us it looks like schwanoma (sp?) or synovial sarcoma. Your MRI and Wyatt's MRI look identical. I'm so sorry to hear this and can only imagine what you and your family are going through. I have had a constant pit in my stomach since we found out the news. I wish you well and you and your family will be in our prayers. If you have any advice or inside info we'd love to hear it.
We love you Allie! You're in our thoughts and prayers and hearts!! Be strong and snuggle tighter with your kidlets...they have healing powers.
Sending hugs!!
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