Hello everyone I have been meaning to post - Ryan got a PET scan on April 9th; and it shows his disease is stable. We have had a lot of bumps per usual the last couple months. His small intestine was so swollen it looked like his LARGE intestine on a CT scan. So he has been trying to dial in how to not make that happen. One big thing being he eats low fiber. At his incision where they took out 14 inches - food is getting stuck. So trying to balance a good diet and re-dialing in pain medicine to make a good quality of life has been a big to do. He was loosing a lot of weight by just “fasting” and letting the bowel rest. It has benefits but is pretty unhealthy if you’re doing that twice a week. So long story short we did not expect the good news we got! He still has a small met In his right elbow. But it has been there since October of 2020.. and it hasn’t changed. Which also means the radiation to that spot didn’t do anything either. We have attended 2 AIM at melanoma symposiums. I have talked about re challenging the target therapy since then. Very amazing speakers from MD Anderson. It was refreshing to hear how far treatment options have come.
On a good note - we have vacation that he is excited about in July to OBX, NC. And we got engaged in December! So we are planning our wedding sooner than later which I am sure everyone understands why - but a few awesome things to look forward to 🥰 Ryan has been doing a lot of physical work on our friends farm so he is a happy camper. Everything feels okay right now.. trying to enjoy the little things ❤️ Hope everyone is well!
Love from MD xoxo
Written by
kellyOd
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Stable disease for Ryan where the melanoma has been so aggressive with weak treatment response is news to embrace. You are engaged, moved into your own home and have vacation and wedding plans: all ties to present and future days of hope. This warms my heart for your family, Kelly.
Making use of presentations like AIM, MRA and MRF also help us consider next steps if needed. I’ll be back in some virtual training on grief responses in the era of a pandemic this Thursday and Fri and back in the MRA patient symposium I think the week after that. Appreciate when folks share insights about these in addition to how you are doing.
Thanks everyone! It’s a strange sense of normalcy for now that I am so grateful for. Instead of waking up each day wondering what is going to go wrong or automatically being in panic mode.. it’s quite relaxed.. taking my son to the bus stop, talking about our plans for the week, none of which involve catering to melanoma for once.. I can breathe, and so can Ryan. It’s so refreshing. Holding onto this very tight 🖤
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