I am so happy to hear some new news of great successes in people’s stories! I am so thankful for all the prayers and kind words everyone has sent as well. Figured I would write an update and thank you all at the same time. This forum saved me a year ago, and still does today.
Ryan has had the colonoscopy, and it was perfect. Nothing wrong. And no calls on the data from the GI capsule yet. But no news is good news, and since the endo and colon came back clean and good, I have no reason to believe the small intestine is any different.
Ryan has a huge swollen lymph node on his lower left back. I’m keeping an eye.. hoping that it’s just angry at his folliculitis, or the colds that have been going around my household. He feels fine. A little more tired than usual but nothing crazy. God damn sneaky disease.. he’s happy though. Which is all I can ask for. My whole being is just a nervous, anxious ball waiting to be dropped to shatter all over the floor. But I hold myself together. Gotta keep pushing, gotta ask questions, gotta have some kind of research to back up and present to the oncology team.
PET scan is scheduled for Thursday at 3:00pm. Everyone knows I’ll call in the morning for the results.. (haha) so scanxiety is at its peak. Answers though.. next steps.
Ryan is taking his vitamins; doing oxygen drops in his drink again. CBD oil. And the diet is still not where it should be. But slowly getting back into the mode.
He’s going to ask for the fluid retention pill that will help him essentially pee out the fluid he’s holding onto. Which I think will relieve some of his ungodly amount of swelling. He has such bad stretch marks from the weight gain that it’s painful. I try and help with cocoa butter, massaging the fluid out from the tops of his feet and ankles.. it just comes right back.
Anyone have any tricks for pitting edema? I press his leg for 3 seconds and it looks like I threw a baseball right at his shin with the indent it leaves. 😕
Anyway.. I love you all. I am so happy I am seeing good news and I continue to pray for others through these hard times. There are other outlets. Keep pushing. Keep fighting.
Xoxo from MD
Written by
kellyOd
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Acceptance to live with melanoma, which includes asking questions, but also acknowledges that cancer has impacts which sometimes just are, so adjustment to live with those realities is part of managing stress.
Here in my house, adjusting to 99-102 on and off again fever and chronic nausea has been an acceptance process in the past 5 weeks. These probably won’t be going away unless something reversed in the melanoma
But finding different anti nausea meds (compazine working better for him than zofran did, and not making him sleepy), and taking them before it gets bad is working ok. Taking ibuprofen and a nap when fever is above 100 is another acceptance strategy. And recognizing that going to work is no longer viable or reasonable and applying for short term disability is the third major acceptance partnership.
Kelly I know you have negotiated these boon and bust eras before. What is helping you currently?
Is there any reason for the fevers?! Yeah compazine is a miracle worker. Did you both decide to take time from work?
What’s helping me, is truly just accepting the reality of the situation. I go into all the appointments; and scans, and weird things (swelling, tiredness etc) KNOWING that it is some kind of side effect of something.. and that it’s not nothing. Being realistic is keeping me sane. I can’t live on cloud 9 and expect this to just go away and we will forever live a normal life.
I work still, so I have that to keep my mind busy.. getting to a certain holiday or the next month even. I pray a lot, thank god for the time that has been given.
Nothing to write home about.. but it’s working for now. Some days I break.
Liver counts continue to climb, in the wrong direction
I am also very grateful for time, good days, time with family, and celebrations. today Wayne got to go visit his mom, who is mostly homebound with COPD, so that's a blessing. My stress workout was to make them a dinner that she enjoys (Shepherd's Pie). I'm still working, too.
You may have missed a post from me about a month ago that the TIL trial had ended because Wayne had new Mets tumors in his liver. That’s why the liver function tests are also rising
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Jesus. How does his back look? 
