Hey guys, let me jump right in…….
Whew, what a day……
I wrote these words last night. I wrote a lot more but thankfully was interrupted by a circumstance I’ll get into later. But the post was terrible. It was bad and even worse as we hadn’t spoken with ham and cheese and I didn’t want them to read it and find out what had transpired that day as it was equal parts good and bad but nonetheless, they needed to be told face to face. I’m one who believes in the universe will put things in place (hopefully for the good) and happy that forces stepped in (more on that later) and stopped the nonsense I was spewing last night. So again,
LET ME JUMP RIGHT IN!!!!!
The last we spoke our heroine was in pain from the tube installed by the temple of doom. Well, that pain never let up. It actually got worse. Let me tell you, there’s nothing worse than seeing your significant other in that much pain. Nothing. At all. Anyway, we went to the 12am meeting. We told him about the severe pain, he said something about taking some Advil because narcotics just mask the pain. Dude, we aren’t getting shot up in the knee to play the second half. This is real pain that we would gladly mask until it goes on. So he prescribes Dialadian. The Dr then pulled out the MRI. Well, instead of now just the one cancer there were four, let me repeat, FOUR, areas of concern. Two in the liver, one in an artery of the liver and one outside which “we don’t know what it is”. OK, the one could be anything, its probably nonsense but four inside the liver and area. That Larry is tougher than we thought. We ended the meeting with, its inoperable. And “I’m sorry”. Wait………
NO!!! No no no no, thats not it. Seriously, what the blue hell just happened here? We weren’t expecting that? And you were afraid of giving her narcotics to mask the pain? Great, good call. Elizabeth was scared and we sat there for a little bit. I wanted her to lose it so bad and get it out but she couldn’t cry because it physically hurt to. That killed me. So we went home. Elizabeth went to bed and I wandered the house staring at the wall and wondering where I would puke in the yard. How much do we pay dance? What size shoes do the girls wear? How do I tell them how to dress, much less dress myself? I was about to wear flip flops to something a little more upscale the other night before she stopped me. There’s things that only one spouse knows because the other one has different stuff to deal with. We actually talked about that a few weeks ago in the concern of financial stuff and that was what I dealt with and she wanted to know more about it. That was of no concern to me now as Ham called me earlier in the week needing to check out of school and I had trouble finding the number to the school, much less who to talk to in order for her to leave. I keep telling Elizabeth through this whole thing, we’re a team, no need to thank me, its just what we do. I realized at that moment that my teammate was hurt pretty bad and I didn’t know what to do. So with great trepidation we headed up to the 2pm appointment with oncology.
Dr Mody came in. He saw the drain pipe and said, I’m sure that’s bad. Bad, we said, is an understatement. We told him about the pain. “Are you taking the Oxys every four hours?” The bottle we had said every six. He gave us a look of, well, of course its going to hurt. He then prescribed us a 12 hour OxyContin and another short term one if the pain spiked. OK, what about this bottle of 80 diladin I have in my pocket. “Oh I wouldn’t take those”. Dude, after the two days we just had, If I were in the pain she was in, this bottle would’ve been gone by the time “The Big Bang theory” was on at 8 o clock. But we had something to dial in the pain. Then he gave us a plan. Three rounds of chemo, two weeks on at once a week, one off. Then Y90 radiation. Wherein glass beads full of radiation are shot at the tumors and they blast away. Then three more rounds of chemo. Then we reassess. So my question was…
If it gets smaller, is surgery back on the table?
He said sure. Now at this point, you gotta have faith right? Because of all the nonsense we’ve heard today, that was at least a positive. So we went out cautiously optimistic. She gets the port for the chemo on the 15th of this month and we are expecting about 24 weeks of everything. But, still pain.
We got home and I grabbed a pizza because we needed something completely unhealthy to eat. So after dinner I started to write the (now lost) new post and she says, hey, is this bag supposed to have this much blood in it?
Sweet Jesus, WTF???!!!! I looked and in addition to blood there appears to be something that looks like loogies hawked up from a homeless man riding the tracks with emphazema. I call Dr Joesph (our Dr friend we know who greased the skids at mayo and has been a huge asset) and he says, its your discretion, but if she’s going in for x-rays in the morning, you could wait til then. It sounded like just a blood clot to him. I took Elizabeth to bed and again had to help her and worry all night about the snotty nonsense in the bag.
This morning was no bowl of cherries either. The dressing around the tube didn’t change as easily as yesterday, lots of pain, lots of cursing from each of our sleep deprived mouths. To say this was a nightmare is selling it short. You have to go to sleep for a nightmare and eventually you wake up. This was just terrible on every level. But it was done and off to mayo we went.
We met Jim in the waiting room and after Elizabeth went back we had a really cool conversation with a woman in the waiting room. She was an RN and heard us talking about Y90. Her husband had it several years ago and she went into their story. Her and Jim had a better conversation as I was just trying to summon the gods of Starbucks to stay awake. But she gave me a little hope. Spoke about how the chemo and radiation had little to no side effects (reinterating what DR Mody said) and gave us some good websites to look at. I know I’ve said it before by my brother in law is just the best. The amount of research he’s done on this is phenomenal. While I’m dealing on the front lines he’s gathering knowledge and letting us know when we get a minute to discuss. He’s the best and I couldn’t think of someone we’d rather walk through hell with.
Anyway, they adjusted the tube for Elizabeth and its draining a lot better. They showed her how to clean the tube which made more sense and really makes me question the nurse that showed us in the first place what to do (really, it was that wrong). We had a family meeting where we circled the wagons and talked it out with the girls. We gotta stay positive be cause either you keep skiing behind the boat or let go of the rope. And one of the two ain’t an option, no matter how far we get drug, nobody lets go of the handle. She’s in a lot less pain now that its doing what its supposed to be doing and she’s hopped up on painkillers, so hopefully for her its a good night of sleep, finally. It’s the weekend and besides taking cheese to dance at 10 and Elizabeth to get her hair done at 2 I got nothing. Well except a full bottle of Myers rum that is going to get a couple more pulls then to the couch to pass out and see tomorrow. So this ends chapter one of this story. Chapter 2 will go into the treatment and the beat down of Larry. We’re going to get Larry, we’ve got too big an army to fail. This story will have a happy ending, believe that and have patience. To quote the Foo Fighters, done, done, onto the next one. Gonna take a week off until we go back to the temple of doom. Give your loved ones a hug and tell them you love them. Keep riding the wave with us because it means a lot. I said it from the jump and it holds true, this ain’t a sprint, its a marathon. So take care of yourselves and keep the faith. Love you guys and blog at you later. Big kiss. MUUUUUAAAHHHH!!!!!