This is what I'm doing as I'm blogging tonight, 1:00 am to start. I have no clue when I will finish this actual entry. It's Sunday evening or, more accurately, Monday (chemo Monday, ugh) morning. WTF, man. All I can really think in my negative state of mind is, "home stretch, my ass."
I'm having this pain in my legs, something fierce. That's me with ice packs to the knees, chillin on the couch. Notice the two freezey pops. It is a two freezey pop minimum kind of night. If I could stand without my knees buckling beneath me and feeling like someone has taken an ice pick (literally) to them, I would be abusing this even more. But I can't. I can barely stand and it hurts to walk and every single time I move it starts throbbing. It also hurts in my tummy and low back. Oh and the best part? I've taken dilaudid (earlier today and yesterday,) and it doesn't even touch it. That's a very strong, very narcotic painkiller. I was loathe to take it at all, given my fear of all things sleep and drowsiness and/or addictive related. But I had to.
I took the first dose of giving up, ahem, I mean pain management last night while we were still at our bed and breakfast, after the wedding we attended. It was the nicest place, with the steepest stairs, like woah. The pain began sometime on Saturday, I think. I was so scared and hurt as it intensified I started crying. I remember saying to Jim, "if you can't walk you can't dance, and I'm not sure if I can walk." He told me not to worry because it is going to get better.
Only it did not.
I tried Tylenol at first, but what shocked me was taking that dilaudid and having it not work. I finally resorted to that yesterday evening, the Saturday or night of the wedding I was attending. It. Did. Nothing.
I felt calmer, maybe. Possibly a bit less stiff. Maybe, drowsy enough to care less about the pain. But, still pain. Still whimpering from it. After the first doss of meds, I was just lying there with tears streaming down my face and Jim just held me. During the day, Jim kept saying "what is it," naturally being concerned, when I would yelp or grimace, and I would just snap at him that it was pain, what else could it be? <<Insert plug for Jim for being such a good man and putting up with me. I love you baby.>>
We started our weekend adventure on Thursday afternoon-ish. I had my neupogen, which is the first runner up to blame for this pain, btw, at 9:45. Chemo could be the culprit, or all the driving, or I'm crazy, or a neat little combo! We got on the road and drove well over halfway to our destination. It was pretty easy and Jack:
We enjoyed a rehearsal dinner Friday night where they had do it yourself outdoor brick oven pizza making! So cool. So Graham and Nitya. That's the couple who were getting married. I felt ok at the rehearsal and it was really great to get to know some people. We even met another baby named Ivo. There were lots of babies! Here's Jack with one of them, during the ceremony:
On Saturday before the wedding, we joined Jack's godparents, Keven and Jess, to go diamond mining in Herkimer, just for fun.
Yep, you read that right. Diamond mining! That was the day my legs started feeling really stiff and painful, so I mostly sat back with Jack and watched. But it was so much fun and Jessica found a really pretty, if tiny, clear diamond. My tenacious, task oriented husband mined plenty as well. He is truly task oriented. Give that man a mission and he will finish it. Here's Jack, aka Thor, mining diamonds:
Much later, during the ceremony, in true baby fashion, Jack over-wet his diaper, but the daddy in the photo was kind enough to help me out. I tried to stand for the ceremony, but at that point the pain had really started throbbing in earnest and I was feeling kind of weak. So, we sat in the grass and just listened. One of my favorite parts of the ceremony was when this was said: "all that I need is already there."
I thought to myself, that is so powerful. At the end of the ceremony, the wind started to pick up. It was so beautiful (soo beautiful!) and powerful and spiritual. It made me feel so happy and at peace. My husband stood in the ceremony, so he made a speech at the reception. It was amazing.
Another thing that was really cool is I got to meet some cancer survivors. The first I met was Susan, Graham's aunt. She owns the farm the wedding was on. Cancer was the topic of discussion a lot this weekend, because Jodi, the bride's mom, is newly diagnosed. She wasn't able to be there, so they used FaceTime. (I bawled.)
Words cannot describe the incredible spirit I saw when I met these two families. They were truly so inspiring and amazing; to myself and my own family, and, I'm sure to the other guests as well. And it wasn't just family that brought this feeling around. All of the guests were a part of it. It was a spirit, an undercurrent, and a theme that was floating through the air like the lightest, sun kissed, first breeze of spring. It was like something I read once in A Tree Grows In Brooklyn (irony not intended, folks, as they live in Brooklyn) where Betty Smith writes:
“Those were the Rommely women: Mary, the mother, Evy, Sissy, and Katie, her daughters, and Francie, who would grow up to be a Rommely woman even though her name was Nolan. They were all slender, frail creatures with wondering eyes and soft fluttery voices. But they were made out of thin invisible steel.”
That's the best way I could describe the women I had the pleasure of meeting this weekend. All of them, related, family, non family, and otherwise. And that is how I choose to describe Jodi, and especially her daughter, Nitya. I have absolutely no right to complain about some stupid sore knees when there is strength like that to be found in this world. I'm just lucky that this weekend I was able to witness it.
My only regret is that I was unable to dance the night away. We left much earlier than pre-baby, pre-cancer fun Kat and Jim would have stayed and I feel just terrible. But I know that a great time was had by all and our friends danced the night away, and for me that is enough. We did get to see them off in the morning before getting on the road for what wound up being about an 8 hour trip, with good stoppage on the way home.
I finished up my trip at home with a bowl of mac and cheese and getting in bed early. The pain woke me, but its 3 am now and I've just taken another dose to try and take the edge off of the pain. In between writing this blog I managed to ice the knees more, which isn't helping much but some. I also took a break to feed Jack magic. He has his 4 month shots at 8:30, so I need some shut eye!
I'm trying to stay positive about chemo tomorrow and know that Dr. Sehbai will at least have some insight into the cause if not treatment of this pain. Cause walking is important.
What a weekend.
Thanks for listening, guys.