It finally happened. I was heating up a mug of potato soup for a bedtime snack and I completely lost it. I found myself sitting on the kitchen floor beside Tyler, this kitchen I’ve loved so much for two years, a kitchen that in a lot of ways has come to define me, held me during my pregnancy and shaped my life as a new mother, and now it is determining who I will be as a cancer patient – I finally collapsed, hyperventilating on tears, weeping about the losses cancer has already brought and will continue to pour down onto our family. I abhor it.

Sabine, that soup is my new favorite food. I barely know you but the sustenance, love, and shelter you’ve brought into our world is worth more than any words can express.

Christmas is here, and I’m at home! I even managed to get out of bed at the same time as Katie so I could see her get her first look at her new toddler table & chairs, her first “Santa” gift that magically appeared in the living room overnight.

The house is a mess and we’re totally not ready for the houseguests that are about to descend upon us, but I don’t care. I can’t wait to see everyone.

I hope everyone has a great holiday!

I got home yesterday. I’m still flat out exhausted, and I seem to be getting some mild chemo side effects (heartburn and reflux, mostly) but the troubles that sent me to the hospital have been under control for the past day, which is a good start. I’m on all new pain meds and hoping this regimen will work. I have to go get bloodwork at the oncologist’s tomorrow so if I happen to need any triage to get me through Christmas, they should be able to handle it.

Katie and I have spent the last day bonding and getting reacquainted, which has been amazing for me. Tyler got to go out all afternoon yesterday with friends for a much needed break. My mom spent most of the weekend here caring for K and baking Christmas goodies (petits fours as requested by my brothers). Tyler and I finally got the Christmas tree decorated and I’m almost done sewing Katie’s present. I made menu and put my mom in charge of Christmas breakfast & dinner. My siblings will start converging on our house on Christmas Day, half the grandparents will be here to open presents, and they’ll all be here for Christmas dinner. My sister and her daughter will be here the rest of the week and I’m super excited about having them here. Tyler’s gift appeared in the mail and there are a few stocking stuffers to open. It’s all coming together – we should have a pretty good Christmas.

It’s the solstice. Shortest day, longest night of the year. Christmas is almost here. I’m back in the hospital, this time on night #2 of a voluntary admit to try to control my pain, get me eating, and hopefully keep me on my feet (and out of the ER) through the holiday.

We’ve gone to great lengths to keep me at home with Katie but it just isn’t worth it when we spend nearly every weekday making an emergency trip to the hospital or oncologist’s office because I’m in crippling pain (8 or higher on the 0-10 scale) most days, I can’t move from bed because my meds make me so sleepy, I can’t play with or even see Katie, and I can’t eat. Weekends are a scary balancing act to try to avoid long ER waits. I’m startled when I look in the mirror and see how thin I’ve gotten, even more startled that my doctors aren’t more concerned about the weight loss. Everyone is on edge and it’s making Tyler nuts to constantly be dropping everything, arranging last minute childcare, and running around trying to keep me comfortable.

Which leads us back to the hospital. This stay hasn’t been bad. Arriving with a specific plan and goals is key. I’m working with a doctor who specializes in pain management. He’s treating me here with the same oral meds he’d be using at home, instead of special IV drugs. His goal is to have me at home, with my pain below 2 on the 0-10 scale, without sleepiness or haziness from the meds, and to be on my feet enjoying my life and eating – and all by Christmas. Sounds like bliss to me.

We’re also beefing up help at home until our nanny starts full time on January 3. We especially need help with Katie (which can be as simple as dropping by our house to play for a few hours) from December 29-January 2 if anyone wants to come hang out toward the end of the holidays!

It’s here. It’s going into my body. So far I don’t really feel anything. The port was a hassle to get put in but I already like it – IVs would have been a huge pain. So this is it, just some bags of medicine.

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I start chemo in 8 hours. I should be sleeping but I woke up in a rare pain-free moment and I’m enjoying it.

Did I explain how my chemo will work? I go in today, Tuesday, and will sit and get one drug infused through my port for 4 hours. When that is done, they’ll set up a new line with three more drugs in it, which will be attached to a small pump, which will be on a holster at my hip. Then I go home for 48 hours and go back briefly on Thursday to get disconnected. The idea behind the slow infusion is that this same drug (FOLFOX) used to be pumped in all at once and it made people horrifically ill. With a slow drip, the side effects are minimized, and with anti-nausea meds, there’s a chance I’ll get through chemo relatively easily. Crossing my fingers to be on that side of the statistics!

This chemo process will happen every other week for the next 6 months, assuming it goes well. I’ll also be going to get blood drawn every single Monday to monitor how I’m doing. And anytime I’m weak, dehydrated, or in pain, off to the doctor for some help. That’s a lot of doctor visits when you don’t drive and it’s at least an hour round trip.

In news at home, it’s been raining and everyone, especially Katie, is stir crazy. I just had a rough few days with my pain management/hydration game that I thought we figured out but clearly haven’t. Somehow, while I was stuck in bed & miserable, a giant flock of friends descended upon our house and fixed things. In the process we figured out some things I need when I’m not feeling 100% … if I’m the littlest bit sick, I don’t know what I need so I can’t articulate those needs. So if I’m home alone with Tyler and Katie and he’s busting his butt caring for her on no sleep and popping in sometimes to ask if I need anything, I’ll lay there and get worse. It’s not his fault, I just need more directed help. I don’t want to eat or drink or get out of bed but I need to. Someone needs to be sure I always have water and sometimes maybe juice. Someone needs to be sure I’m taking little nibbles of food all the time even if I reject the first 6 things I’m offered. Someone needs to kick me out of bed for 5 minutes to read a book to Katie, because I need the exercise from the stairs and the motivation from those snuggles and kisses. I see her growing in leaps and bounds every day and I need to see that. In short, taking care of me on some days is just as much work as taking care of our toddler. So every friend that drops by to warm up broth and watch while I eat yogurt is a treasure.

Also? CHRISTMAS! Ah ha ha ho ho ho. Before Cancer came knocking, we invited my sister and her family to stay for Christmas week, and planned to host a big Christmas dinner. And it’s still happening. We have a Christmas tree with … lights on it? (We really should decorate it.) I hung our stockings the other day. I’m sure my mom will be over soon to bake cookies, and I’m sure she’ll manage to find a ham and toss it in the oven on Christmas Day. Luckily we had already decided to cut way back on presents this year, so those are mostly handled, and an angelic neighbor is wrapping them for us, but I need to dispatch someone to buy stocking stuffers and then, the big problem: CRAFTS. Do it yourself gifts are all fine and well until you’re stuck in bed and can’t DO anything. So yes, I’ve delegated some of that, and am hoping I can crank out Katie’s one special present myself in under an hour at the sewing machine. Tyler gets the task of building an IKEA gift. Oh, and Katie’s gift to Tyler seems lost in the mail, and it wasn’t that cheap, and can’t be replaced quickly, and it was a LivingSocial deal that now seems sketchy, and I’m not very happy (add to to-do list!). Hopefully we can make Christmas happen. I know K still isn’t old enough to get it but she is old enough to get yummy new foods, new toys and wrapping paper, and a house full of family you don’t see often enough, so in those ways it’s like her first Christmas. I hate to think it might be her last with me, but if it’s motivation for me to sew that babydoll and move from the bed to the couch, I’ll take it, and I’ll love every minute of it.

One last thing. THANK YOU to all of the people who have been helping us. Housekeeping, groceries, rides, hot meals, babysitting, playdates, cleaning our kitchen, clearing out the fridge, tidying up toys, gifts for Katie, offers of help, sending money & gift cards, surprise care packages for me, wrapping presents, taking out the trash – all of the million little things you’ve all offered us have been mind blowing, and we’ve only barely started this journey. If you haven’t had a personal thank you from us, it’s coming, but I want you all to know that we feel loved and we feel lucky.

Not being able to help Katie is the worst part. It’s 12:30am, she’s awake and screaming, Tyler can’t settle her, and if I go in there it’ll just be a nightmare of her asking to nurse and flailing around while I try desperately to protect my tender new port site/stitches/incision and not put any of her weight in my arms (can’t lift her until after it heals next week). I hate hearing her cry – I’m supposed to be able to go console her with my milk.

But I guess this is how it is now. Hopefully after my port heals I can take on some sleep duties again and hope that she someday forgives me for not nursing her. I try to explain and I think she wants to understand but just can’t process why is take away something so sweet and powerful.

Today Tyler and I went to my oncologist for my chemo education appointment. We learned about the drugs I’ll be getting, the prescriptions I’ll be taking home, the side effects I might get, the symptoms that mark an emergency. We’re already so numb to all of this. Cancer. It’s just this big ugly thing that sits in the middle of our lives now and we just sort of politely shuffle around it, awkwardly bumping into sometimes and muttering an apology. Life is so strange.

The medical assistant we met with today brought us two stuffed animals – a little pink elephant and a tiny sea otter. She has two kids and told us that while she usually keeps work away from home, they heard her talking about a favorite patient who’s been diagnosed with cancer and she has a one year old baby and she’s worried about the family – without saying anything the kids went to their rooms and spent a long time picking out a toy from each of them to give to Katie. It’s amazing to see how much love there is out there for us. It’s humbling. Tyler immediately started playing with them. When we got home later, Katie scooped them both into a big hug, tucking the otter under her arm and kidding the elephant repeatedly on the end of the trunk.

Tyler continues to be amazing. He’s sleep deprived like the mother of a newborn. He’s bonding more and more to Katie every day. He’s managing my errands and appointments and medications like it’s no big deal. He keeps the house running and the baby alive. He’s getting more and more sweet with me by the day. He’s keeping us all together when the pressure is too much for anyone.

Some good friends came down from San Francisco last night, brought tuna casserole with chocolate cream pie. They cleaned our kitchen and washed Katie’s laundry. I ate too much and I’m in agony, thus the late night post. I didn’t even make it to the pie. But it was amazing to see them.

I’m so tired. I’ve been doing well, really. To be totally honest, constipation gets me down. This is a blog about colon cancer, so I can talk about that, right? It’s the one pain so far (I’m sure chemo will change this) that painkillers can’t fix. It just makes it worse. And damn does it hurt. Ruins my outlook. Maybe something upbeat tomorrow.

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