Side effects this time around are absolutely insane. Ryan has to be on decadron for the brain swelling; which is causing rapid weight gain and swollen limbs. Ironic. And he’s depressed and irritable to the point where I throw up my hands and just say I don’t know. He says he doesn’t want to mess up anyone else’s mood so he just isolates. And the weight gain and the literal insane appetite he has is making him even more irritable. He knows he’s over eating but his body just never feels full. Until he stands up and he is short of breath from his stomach being LITERALLY full. What the hell?!?! I am PRAYING that the brain MRI comes back okay.. it will be on August 1st because of the brain swelling they wanted it ordered for 6 weeks to keep an eye. Hopkins seems to think it is radiation necrosis rather than recurrence. But no one can be 100% unless it is biopsied. Meh. He doesn’t really have any other pains than his joints. There is a spot in his abdomen that I am hoping the Taf Mek knocked out of the park. Only god knows..
Venting really.. the last week has been super hard. Me and Ryan have clashed heads many times because of his attitude. Luckily we got to go to Ocean City MD for a few days for the 4th and my birthday and that was a nice little break.
Hope everyone is well, and would love to hear some updates on everyone.
Xoxo from MD - Kelly
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kellyOd
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I see you are both back in marathon mode. And accommodating to fresh grief, which falls heavily after some time of positivity.
Is there a support group near to you guys? Or an oncology therapist that could help you two weather this transition? We have found both available to us and helpful. And brain swelling will make ALL of us irritable because it affects function and emotion.
We have the oncology support through the hospital; therapy type sessions along with any other problem that crops up. They are fantastic.
Ocean city was nice; the beaches were packed. Time of year though. Got two big umbrellas and plenty of shade. Got him an SPF hat and a long sleeve under armor shirt so we could protect from the sun and a bunch of sunscreen! Ate good food, and got to enjoy some us time. It was a nice few days ❤️
Wow! We will be in the OBX August 31-September 7! We also are buying a pop up for that trip. Going with my best friend of 22 years, her kids and my 4 year old.
Wouldn’t it be a riot if you were there the same time?!
I take care of my sons skin, even though Ryan isn’t his biological father; he’s been in his life since he was 1. And since this whole hurrah I have been lathering my little ones skin probably TOO much. We live where we have access to a pool and he loves it.
I’m sorry the trip entails an emotional endeavor. I spread my grandmothers ashes in her home town of Gassaway West Virginia. That was an emotional yet freeing experience..
We will be in OBX week of Aug 11 and scattering ashes in Ocracoke, an Island my brother and family have loved since we were teenagers. It's been a difficult 18 months since his death, but I think we are ready for this step. I have also scattered ashes where our daughter came off the AT last year after walking 600 miles and in a glacial lake in Montana. His friends have been scattering his ashes across the world because Patrick was well loved and traveled extensively as a passion and to visit art.
Hang in there Kelly, don't really know what to say to help but know that you are in my thoughts and I am sending lots of positive vibrations to you two. You are a very strong woman!
Kelly, I know so well the side effects of the steroids. Mark is going through all of the same things. I try to give him some space, but not too much, I don’t want him to get too depressed. Mark is still able to work so that gets his mind off things for a while. I’m so glad Ryan was able to go back on the Taf/Mek , and pray that it took care of the spot in his abdomen. I am amsl praying that the MRI Brain comes out ok, and the spot on his brain is necrosis.
I’m so glad you were able to get away for a few days, and hopefully relax a bit and enjoy yourself. Happy Birthday. I am a July Birthday as well.
Mark has a dr visit on 7/29. He still isn’t on any treatment so I pray that everything is ok, he doesn’t have scans until 9/4. That’s a little unnerving, but I try not to think about it.
We were able to go to Las Vegas for the 4th weekend, and had fun. We will also be going to Paso Robles (wine country) next week for a few days for Marks work, but we will have down time to check out a few wineries.
I will continue to pray for Ryan, and that the scans come out good.
I wish I lived out that way, I would love to get together and chat.
Thank you! The steroids are definitely causing the irritability and got that confirmed by the Onco today. I’m the same way, I try to give him space but not too much. 🤷🏻♀️ I have no idea when a new PET will be done.. not knowing.. UGH. I will be waiting to hear the update from 7/29 for mark!! So glad you guys went to Vegas that sounds incredible. I’ve never been to that side of the country. I as well wish that we lived closer.. it would be nice ❤️
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