Hey everyone, happy new year! I have an update from Joe that im going to share because honestly you want to hear this from him. All i'll say is keep praying and thank you for all your support and care for us, it is truly what has brought us this far.
"Hey friends I’m sorry this update is way overdue, you probably should have received it about six weeks ago but I've been too run down and drugged to communicate very well. The last update I did was in December after we had the complications with my liver and the doctors had to place a drain tube in my chest (which we haven’t needed so far). The other main piece of news was that we were going to have to take a break from all treatment because the inhibitor would slow my body’s recovery from surgery. Several weeks ago we were given the all clear to start the inhibitor again and last Monday (January 5th) I got my second dose of the inhibitor. This Monday I went in for my weekly labs/check-up and while all my levels (kidney/liver function) looked good my weight had dropped again and was now below 50 kilos (110lbs) which has always been my personal cut off line. Basically my viewpoint was that if my weight ever got that low than I needed to do a feeding tube. This is kind of a big deal for me because I view adding tubes as one of the worst things ever so to ask the doctor is a pretty big deal.
However, after discussing with my doctor if she thought a feeding tube was a good idea she explained that it is now no longer worth the potential consequences to give me a feeding tube. Even if there were no complications or damage caused by adding the tube it wouldn’t help my body gain weight, all it would do, would be giving extra nutrition to the tumors. We also decided not to schedule any more scans for similar reasons that it isn’t worth the potential damage that would come from exposing my kidneys to that amount of radiation. My body is nowhere near being able to do chemotherapy so we will keep doing the inhibitor as long as it seems to be working, but we won't do another scan unless something crazy is going on. At this point we aren’t going to be doing much invasive treatment rather we will simply be managing pain and symptoms.
Really the simplest way to say things is that we are in the final chapter in this journey (it's impossible to predict how long my body will hold up; if the inhibitor drug is able to get some results it could be months…if it doesn’t work and the tumor causes a lot of complications it could be less time). While we will never have a guarantee in terms of how much time I will have there are a number of practical things that I have been putting off that I now need to deal with. Things like writing up an advance health care directive or making a list of usernames and passwords for my various accounts so my family is able to figure things out.
Personally, I’m really peaceful, it's hard news but I’ve known its been coming for a while. I’ve felt and experienced my body deteriorating over the past year or so. I’m peaceful but it also feels kind of surreal because there are times where I feel really healthy, but there are also a lot of times where I don't know how my body is physically alive.
As always it remains a possibility that the God will decide at random that he wants to heal me physically but even if he doesn’t in no way does that impact my faith, hope or peace. Over and over and over I have seen Him do so much both in my life personally but also in the lives of those around me, even people I have never met. From the very beginning when I was diagnosed we knew that is was probably just a matter of time and as we have continued with treatment it has become more and more obvious how this was probably going to end. My journey to this point and the fact that I am still alive is a miracle; the reality is I should have died very early on. The opportunities that I have had over the past 3.5 years are amazing and while there has been more pain and hardship than I could ever have imagined so much good has come out of it as well.
For me the call remains the exact same - I’m going to wake up everyday and love the best I can, taking it one day at a time doing as much as my body will let me and trying to do the best I can. My hope for you is that you are able to have the same peace that I have, to share the same hope that I have. Please don’t freak out or suddenly change behavior around me; nothing has really changed especially over the last couple of weeks. I simply wanted to make sure everyone knows where we are headed. Hopefully I’ll get a few more posts up over the next stretch of time; it depends a lot on my mental focus. Please continue to keep both my family and me in your prayers. Obviously this is hard stuff to deal with especially for my parents who are helping me with a lot of paperwork etc…Your love and care makes a huge difference for us, and without all of you there’s no way we could do any of this. Know how much all of you mean to me. I love you so much; I really can’t express it in words. Let’s keep living one day at a time loving well and we’ll keep walking this journey together.
God Bless and I Love you,