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Diagnosed with sarcoma? Let's share
Sarcoma | Last Active: 3 days ago | Replies (853)Comment receiving replies
Hi, I'm Kristen, 36, I was diagnosed with Ewing's sarcoma November 2017. My tumor had pressed against one of my ureters blocking the drainage from my kidney (causing pain similar to a kidney stone) and was very small when it was found. I've been through 7 rounds of chemo and have had surgery to remove the portion of the ureter that had the tumor. The tumor was unable to be seen on CT after just the 3rd round of chemo,, so things are going well. I'm being treated by the sarcoma group at Mayo in Rochester, MN. Each of my chemos requires a hospital stay of 3-6days which is hard on this mom of 4 (ages 11-20).
Replies to "Hi, I'm Kristen, 36, I was diagnosed with Ewing's sarcoma November 2017. My tumor had pressed..."
@kanaazpereira we have had many good offers from many family and friends but have not needed to utilize them because our children are old enough to care for themselves and each other. My daughter who is the youngest has stayed with friends/cousins to distract and comfort her. Family, friends and co-workers have been wonderful bringing us many meals. It doesn't get any easier, my first round of treatment- I was in the hospital and unable to attend my daughter's Christmas concert. It was live-streamed to Facebook, and I was so happy to be able to watch. My second oldest son had a concert a week after my surgery (I still had an indwelling catheter and was in significant pain.) I told him I was not going to make it to his concert and he down played it saying they had just started practicing the songs and they weren't very good at them. Luckily my oldest son decided to go to the concert and video record it for me. The first song on the recording featured him playing a solo with his saxophone. He was so sweet to try to protect my feelings. All of the kids help out around the house and if I need anything they are usually more than happy to help. It is usually me that has a hard time with things, the kids don't do things how I would- like folding towels/clothes or sweeping the floor. I am trying to let go of this but it's hard.
I am a nurse and miss work a lot- I became a nurse to take care of others, not to be taken care of. At least it gives me something to talk to the nurses about when I'm in the hospital.
It sounds like you have such a wonderful family, @kristennursepatient. I wish you all success.
I made it through and am now getting back to work. Last week was my first full week of work, it was exhausting but good to be back.
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Welcome @kristennursepatient. I'm sorry to hear about your diagnosis, and so glad you've joined Connect, and that things are going well. @suzanneb @zaruhi have also talked about Ewing's sarcoma, and I hope they return to share their insights with you.
As a mum of 3, I can only imagine how stressful it must be to leave and put everything on hold while you stay in the hospital. Do you have family or friends who help with the kids?