Jonathan is doing well. We've had some very low lows and some high hopes and right now we're coasting. I'm ok with that. The road hasn't been easy for either of us, but his strength continues to amaze me. At the moment, we are back to chemo by mouth -- 2 pills daily. No IV infusions, no high-dose regimens, no triple/quadruple-weekly visits to the clinic. He looks great and his pain seems to be improving. We're both keeping our fingers crossed. Neither of us gets too excited -- we know how quickly things can change. So we try to enjoy it and pray for a time when someday we can fully relax.
We took a trip to the National Cancer Institute down in Maryland to see one of the doctors Jonathan saw during his initial diagnosis. She gave us a rundown of what she believes to be good options for Jon, and thankfully, agreed with the current regimen. Besides being an amazing doctor, she really gave us something that most doctors are reluctant to give -- hope. Not just hope for long term survival... Jon and I have gotten that -- Hope for long term quality. Obviously, Jonathan wants to live as long as possible, and doctors have told us that technically since his cancer is strictly in the bone (so long as it doesn't spread elsewhere), it's not as life threatening as it would be for someone with typical DSRCT. So far, we've been able to manage it. But in accepting that survival, Jonathan has also had to accept the idea that he may quite possibly have to live with the pain for the rest of his life... and that is an idea that must seem very overwhelming. I really can't imagine someone telling me, "well you're going to have to fight HARD to live, and if you do, you'll still be in pain." My point is, this particular doctor not only said how well Jon is doing, she talked about the future...she mentioned that in a few years there could be studies done to see exactly how to target the specific receptors/gene/other stuff I don't understand that is responsible for Jonathan's cancer. "A few years." In a few years, there may be an answer. We aren't looking for a miracle, but perhaps something that just makes it a tiny bit easier for him...for both of us.
He doesn't know how proud I am of him. It really has little to do with cancer. It's just him. I am proud of everything he does...everything he accomplishes despite all the challenges he faces on a daily basis. I am proud of our relationship, and how strong we are. And I am so proud to be marrying him. Oh, did I mention we're engaged? :)
I know that every couple in love believes their love is something special, but there is something between Jonathan and I that I cannot quite form into words. Yes, we love one another -- immensely -- but there's a bond, a deep friendship, a sense of 'home' that I wish everyone could have the chance to experience (although I know only a lucky few ever do). Going through experiences like we have this past year and a half have really strengthened our relationship in a way that I don't think anything can break. The two of us are quite a team. I am truly thankful for having him in my life every single day.
I do wish he didn't have to work so hard. It's a strange feeling...lately I've almost been forgetting that he's sick. He looks so good, things are so "normal" that for a split second I forget that there's always a risk of things changing... he could get sicker (again) and although I know we can face anything together, I often wonder what it would feel like to not be worried, not to have those thoughts in the back of my mind... just for a day. I imagine I would feel lighter.
Sometimes when I'm sitting on the subway or walking around the city and I see a happy couple, I can't help but feel a small amount of anger... why do they get to be so carefree? Why do I have to fight to keep Jonathan? We belong together.. we are SO right for each other, shouldn't it all be that easy?? It makes me think of "Annabel Lee" by Edgar Allan Poe:
But we loved with a love that was more than love-I and my Annabel Lee;
With a love that the winged seraphs of heaven
Coveted her and me.
I don't know...maybe the angels are jealous.
But then I realize that no one is safe from life. I don't know what that couple is really going through. Everyone has fears and things to stress about...everyone has pain and sadness in their lives... no one is safe from life changing in the blink of an eye. At least Jon and I know our enemy. Maybe that's an advantage. I guess my point is, enjoy every minute, every second of happiness. And don't assume a person's life is easy. I'm sure people have looked at me and judged or assumed but in reality they have no idea what's going on in my life.
We are so excited for the wedding and have already planned so much! It seems to keep getting bigger and bigger! Also, Jon's band has been performing in the city and the turnout has been awesome! I love watching him sing and do what he loves. Just another proud moment for his bride-to-be.
Love one another. Life is too short, moments are too fleeting to not let yourself love, and remind yourself how lucky you are.
"Those who love each other shall become invincible" -- Walt Whitman