Living with the loss of stillbirth and learning to live in the sunshine of our new normal.

Wednesday, September 22, 2010

There are big, dark clouds coming out over the mountains. I didn't know there was supposed to be a storm this week. All of our windows are open. And if that isn't a metaphor for our lives the past 6 months...
We're sitting at the chemo clinic. Mike is trying to take a nap. It's so busy and full and annoying here that he might just be pretending. I don't blame him. My butt is numb from this crappy chair. Someone sat right next to us so I'm stuck out in the aisle, trying to fold myself up to not be in the way. There are 6 empty chairs that are not "this close" to someone. And she's loud. Loud. Anyway, everyone is hooked up their poison, so there's no moving now.
Mike's creatinine levels are high. 2.4, which I think is the highest they've been since he was in the hospital. So they decided not to give him any Oxaliplatin at all today. Which is not a good thing. This FOLFOX treatment has been shown to kick colon cancer's ass. But if he's not getting one of the major components of it, is it doing any good at all?
I hate coming here and seeing other young people. I wont lie, it's hard seeing anyone in here. Even older people. But people in their 20s and 30s? It makes me mad. And this weather isn't helping.

Monday, September 20, 2010

Time is rushing by so quickly, it seems like one day is just seeping into the next. It's nearing time for pumpkin patches and raking leaves. Our air conditioner broke last week, so I'm looking forward to cooler weather big time.
Nothing to report on the cancer front. Mike has a nice black cast on his right forearm. He only has to wear it for 4 weeks. 1 down, 3 to go. Or is it 2 and 2? Chemo this week. I have a list of questions for the doctor. And if all is going well with his kidney function, I'm guessing they'll give him more of the Oxaliplatin.

Alicia should be dropping Averi off any minute. The fire in Herriman has made it impossible for her to go to preschool today, and with the air being so bad, her little lungs can't handle it anyway. So we'll have two 2 year olds today. Probably some Dobie fights and a lot of crying. Luckily we slept really well last night (thank you Benedryl!) so it's going to be okay.

Wednesday, September 8, 2010

I took an extra crazy pill today. I've been having a very hard time with my emotions the past few days. I'm all over the place. But mostly I'm sad and I'm angry. And because I am sad and angry, I have a very short fuse with Sophia, who can tell that mommy is easily bothered. She's playing the "I don't have to listen to you" game again. Luckily, Mike has a lot of patience. And he knows I'm crazy lately.
I know it's not just pms. I know it's not just the changing seasons. I keep thinking about Charlotte. And about Laura. The past week, I keep getting confused, and thinking Laura is still alive. Let's just say it doesn't make for a happy moment when I remember that she's gone.
Dragonfly season is almost over. Maybe that's part of why my crazy brain is so full of damp cotton.
Mike's oncologist sent us up to the hospital after chemo today (which Mike is officially 1/2 done with, btw) to get his wrist looked at, set, and casted. To find out if he needs pins and surgery- which is apparently a huge deal if you have cancer. Dr. Chandramouli pulled out some favors and got us in. But of course when we got to the hospital with the xrays (that I made a trip home for while Mike was hooked up to the chemo crap) they told us we didn't have an appointment until Friday afternoon. Mike told the girl 3 times that his oncologist had set it up and we were supposed to be there today. No go, she said.
We got home and ran some errands and Mike looked at his phone which had a voicemail. It was the idiot girl from the Orthopedic Center telling us, oops- she made a mistake. Please come back before 4:00 today. Of course, by the time we got the message, it was 4:00. So he'll go in Friday at 4:00. This is the way our year has been. Wrong turns and detours. Hopefully my extra dose of Celexa will help me through the next pothole or 10. We know they're coming. It's like this roadtrip never ends.

Saturday, September 4, 2010

The amusement is wearing off. I can honestly say that. I know the old saying, "if I don't laugh I'm going to cry," but I don't know if that's where I am. I'm just not laughing anymore.
I started this blog because I was going crazy. Since I'm visiting there again lately, I've been blogging in my head a lot. So many words in there. So much to say, but my fingers wont type what I think. And when I wake up in the morning, it's gone.
I'm tired. Tired of smiling and saying it's okay. We're fine. I know it's not normal to have this much put on us, but we're fine. We're fine. It wears you out. I've felt all summer like I had a light inside of me. That things were going to be okay because of this light. That we could smile and laugh and make jokes about cancer and broken bones because the light was on. But today It seems like it's just a cheap light bulb. And it's flickering. Obviously, I'm not giving up, we're still going to be fine. But today I am tired. Today I am spread out all over the world- those pieces of myself I've given away. Today I am worn out because the pieces I have left don't fit right.

Friday, August 27, 2010

There truly hasn't been much worth sharing lately. We've been working and playing, and leaving the cleaning for later (ugh).
Wednesday, Mike's oncologist informed us that his kidneys are handling the chemo quite well, and they wanted to increase the amount of Oxaliplatin that they're giving him. The "normal" dose for his height and weight would be 200mg. He's been getting 100mg. They changed it to 125mg and already his side effects have increased. He's more tired this round, and also the cold sensitivity has appeared. the doctors have told us that patients have described it as though when drinking anything cooler than room temperature, it feels as though they are drinking a glass of broken glass. So far it's not that bad, but he said that his tongue feels tingly and his lips felt as though the milk was freezing as he drank it. Not cool. But better than cancer, I guess. We just have to wait 2 weeks to do another blood draw to find out if his kidneys are okay with this. They're not clearing the meds out as quickly as they would if they worked normally, so he actually has the crap in his body longer than most people would. Awesome. But his blood counts look good still. He is still slightly anemic but they attribute that to the chemo. It will be good to see that go away when this is all done, since that was our first clue that something was wrong..
So that's the cancer news. All is well as well can be for now. After his last treatment (December 1) they will begin scheduling CT scans and more blood work. Since he can't do CTs with contrast, there may be a few MRIs thrown in there. Yipee. But if everything goes according to plan, after March or so, the most annoying thing we'll have to deal with is doctor visits and shoveling snow.


Thursday, August 19, 2010

It's a really beautiful morning. It was a little rainy last night so there is still cloud cover and the smell of freshness. It feels like camping weather.

Saturday, August 7, 2010

It's been too long since I've posted. Of course things have been going on, but I've been busy doing them and not writing about them. Someday I will be better at the blogging of our lives. Right now we're just living them instead.