Seeking peace of mind...
Hello! My (36F) beautiful husband (36M) has been battling epithelioid sarcoma for about 4.5 years. It was deemed stage 4 fairly early on so we knew it was terminal and we were focused on prolonging life.
He has done so much to control the disease: surgeries, chemos, radiation, ablations, non-chemo medications, interventional radiology procedures etc. So many scans, so many visits, so many side effects, so many MyChart messages- just, so much.
He has had widespread but managed mets for some time but in the last 6 months a large liver tumor has caused issues. He got a biliary stent and two biliary drains in hopes of controlling his bilirubin to be able to get a radiation ablation procedure called a Y90. After an entire procedure to map and plan, and his bilirubin just eaching the acceptable level, we got a call from the IR doc who basically said I am willing to do the procedure but based on the anatomy I can only target part of the tumor and it may cause more bad than good for you (fevers, readmissions, etc.). He has also been having fevers with his drains that bring him back to the hospital.
Taking this all into consideration he has opted not to do any last ditch chemo, med or the y90 procedure and to transition to palliative care (in case of any last palliative radiation treatments and feeling we are not in a place that we need the full support of nurse visits or other resources yet as I am a nurse as well) and then hospice through the same company. He's still fully independent but fatigued, lower appetite, and clear decline over the last months. We met with the liaison today and she was so helpful. His goals are to maximize his quality of life and comfort for the remaining 3-6 estimated months he has.
He is so brave, reasonable and he has handled everything with so much grace. It never ceases to amaze me.
Despite knowing this is the right thing, and fully supporting him in his choices I can't turn off the fear. The fear that we are doing the wrong thing. Like maybe that procedure or med could buy us more time together. Like he's not sick enough yet. I know it's silly and born from love and wanting the whole life we planned together and having to face what we've been preparing for for years.
I guess I'm looking for people's experiences with people who transitioned when there were still options (not curative but could technically help) but they weren't worth the negatives. Also for people who are younger as I have trouble finding stories. Or general reassurance that the fear is normal but the decision is correct.
I'm so scared and he's truly just the best- my everything. I want to support him in any way I can.
Thank you!