Wednesday, July 17, 2013
The last couple of weeks have felt very busy. We had a good 4th of July. I found the box of left over fireworks from last year and we picked out a few new ones. Owen got to light everything off while Dave and I sat back and watched. It was a nice family moment.
David decided to stop doing the Avastin treatments. His first missed appointment was July 3rd so the 4th was something of an Independence Day for him as well. Free from the medicines and free from the stress associated with making the decision. His whole demeanor changed after the decision was made. He's so at peace which in turn helps me be at peace. Last week he went in to have the central line removed since he won't be getting any more treatments. He had it for over a year and while it didn't hurt it was a low level irritation that he is THRILLED to be rid of. I got to watch them remove it which was super cool... I know... That's weird. I'm weird. Ha! David was amused by my amusement. He got no stitches and it's healing very well which we're happy to see. Thats a change from even a month ago when he was still on Avastin and the sore on his leg took over a month to heal. They found a clot in the central line when they removed it and advised him to start taking the blood thinner again but we let them know he won't be taking that anymore either.
Tomorrow he has an appointment with the oncologist, basically to make sure he's got all his T's crossed and such. Every healthcare professional we've talked to has been very supportive of this decision and that gives him some peace of mind as well. Deciding to stop the Avastin is something we've talked about off and on for the last year. Recently he took a little downhill slide and the dr started asking a lot of quality of life questions. It obviously had come up a lot more often lately. The dr is right, his quality of life has diminished. I think making the decision now felt right for both of us. Once that decision was made we discussed all his other meds. Most things are palliative but the Coumadin treats something so after heavily weighing the pros and cons we decided to stop that too.
The potential complications and side effects of being on them far outweigh the benefit at this point. The hospice manager had a lot of questions but after discussing it she felt we had more than adequately explored both sides and she supported our decision as well. It's nice for David that people haven't questioned him in a condescending way. I think he was worried about that but you'd have to blind not to see the impact this has had/is having on him.
David has spent countless hours trying to encourage me, build me up, prepare me for the windy and bumpy road this journey is taking us on. He says it makes him happy when Owen and I make plans for the future. Sometimes that is really difficult but if we can give him some peace of mind that's the least we can do. I'm grateful every day for how much love, patience and selflessness Dave shares with me and Owen. It would be so easy for him to be bitter or angry or depressed and he does his best to not burden us with that. It has helped me keep my chin up and I felt like it was important that he share that with Owen too so we had a long talk with him about stopping the meds and what that means. I wanted David to share those words of encouragement with Owen as well. To let him know what he wants for O's future and how he knows it will be hard but that Dave is excited for us to keep moving forward with our lives. That he wants to hear about our plans. D has always needed an adventure to look forward to, usually a vacation even if he planned it a year in advance. Now he's planning and preparing and looking forward to his next adventure.
Owen is doing remarkably well. He's staying moderately busy and planning for high school. We talk about everything regarding Dave's health very frankly with him and when he has concerns or questions he brings them up. He amazes me every day and I know that he and I will be ok.
So... What does this all mean? It means that the blood vessels have started growing again and the tumor will soon be getting "fed" again. How it will react is anyone's guess. We assume it will start growing more rapidly and his paralysis will progress and he will pass. That's really all we know. Stopping the Coumadin means he'll likely get blood clots. Those could kill him as well but really since that's the road he's on anyway we're not worried about that, worst cast scenario he has a stroke that doesn't kill him right away. It's a little out of the ordinary to not list "death" as your worst case scenario. Having a stroke isn't very likely but we tend to explore every known possibility when we make decisions.
I'm not going to sugar coat it. Staying upbeat is increasingly difficult. There are a lot of tears and anxiety but I am also comforted by the fact that those thoughts and feelings are normal and I'm not alone or unique in that process. David made this decision the Thursday before Jesse's birthday and that was a rough week for me but I am also acutely aware that life goes on for the rest of us and to spend all our time with an Eeyore cloud following us around is a waste of our precious resources.
This week our thoughts and prayers are with Tim and Rose's nephew, James Dahl, who is getting ready to go to UCLA for a hemispherectomy to treat a very rare disease. Those who are local may have read about him in the Register Guard or seen a story on KEZI news. We hope James' surgery goes as smoothly as possible and that he and his family are filled with patience and strength and hope for the future. I wish there was more we could do to help but please know our hearts are with you.
Please go here to learn more.