Rants, rambles, news and notes from another geek

Two Weeks as a Caregiver

The last two weeks have been… interesting. Last month my wife Emily was diagnosed with very early breast cancer. It is simply amazing what modern imaging can find. The tumor was just a smudge on the images. A biopsy found something that was less than 1mm in side and had to get sent to Vanderbilt for diagnosis. The diagnosis was micro-invasive ductal carcinoma in her left breast.

Ugh. She’s 36.

Because of family history she opted for a double simple mastectomy with reconstruction including the sentinel node on the left side. In the weeks leading up to the surgery, as we prepared emotionally for it all, the most amazing thing happened. Meghan, Em’s sister, organized a huge operation of helpers and friends to do everything from bringing us food to picking up the kids after school. I simply can’t say enough how much we appreciate all the help our amazing friends and family gave us during this time. Thank you thank you thank you.

The surgery was two weeks ago and it went great. Sentinel node came back clear which means it didn’t spread. Woot! We spent the first night in the hospital which is fine, I’ve done that enough times. The hospital has good Wi-Fi so when Em wasn’t awake I goofed off on my laptop playing WoW or something else.

The pain levels Em experienced were a bit more than we had expected, so we had to work a bunch to get the right mix of painkillers to keep her comfortable. After going home, the game continued. As her primary caregiver, I had to figure out how to track and manage all her pills, which was a bit daunting at first. Geek that I am, I eventually came up with a cool Excel printout that I put in the bathroom.

It looked like this (I used it vertically–the time went top-to-bottom):

Emily-Drug-Schedule

Nerdy? Yes. Effective? HELL YES! I had alarms set on my phone and on my bedside alarm clock that reminded me every time we had to do something. It was kinda nutty, but for that first week it helped immensely. One thing you don’t want to do after major surgery is fall behind on the pain. It can be almost impossible to catch up without pushing the limits on some of the drugs and it can seriously slow down recuperation if the patient is in major pain.

The other thing we had to do is what they call “strip the drains”. After the surgery, Em had two tubes coming out of her sides that went to little vacuum reservoirs to collect the fluid. Every few hours (at first) I had to drain the reservoirs and wring out the tubes to remove any clots that may have formed. Kinda yucky work, but it needed to happen. She also had a cool little “pain pump” installed that directly sent local anesthetic into the wound site via two little wiry tubes. Once the pain pump ran out, I got the job of removing the wires. I was just a bit startled how much tubing was inside her… almost 8 inches! It was kinda fun pulling them out. Hehe…

Sidenote: When you’re doing the drain stripping, be really REALLY careful to not tug on the tubes or your wife will try to kick you out of the house regardless of how much meds she has on board. You have been warned. :)

As the first week ramped down, the pain got much more under control. We started dropping off the schedule at night and went to a mode on-demand kind of thing. During the day I still tried to stick with it as best I could. The amount of fluid coming out dropped a lot during this time as well, which was good. The doctors has said we wouldn’t have the drains out until we were at less than 25cc in 24 hours. (At first we would get more than 25cc in 3 hours per side!)

During the second week, Em still spent most of her time in bed but was much more able to get up and move around the house. She was on milder pain meds too so she was a lot less loopy which she liked. We still had amazing support coming in daily from our friends and family… food, snacks, toys and kidcare. Another huge shout out to everyone who helped.

Exactly two weeks after the day of surgery we went back in to the plastic surgeon who was doing the reconstruction. Recovery was going well, swelling is low and they decided to take the drains out and add more fluid to the tissue expanders that were implanted during surgery.

“It will feel like when you had your braces tightened as a kid.” Hmmm… not too bad.

BULLSHIT! At least for Emily it was a bit more than that. She had to go back onto Vicodin for two days to get through it, but now she’s back to simpler stuff which makes us both happy.

Looking into the future we can expect them to add more saline to the expanders for a few more weeks (which Em isn’t looking forward to), then a few months to let it all settle down. After that, the expanders come out and in another surgery they replace them with traditional saline implants.

I started back to work today which is both good and bad. Good to be getting back to a sense of normalcy. Bad because I have to catch up on two weeks of shit that happened while I was gone. Oh well… things could be much worse.

In addition to all the thanks I want to heap on all those who helped us during this time, I also was to say loudly how proud I am of Emily. She has been such a trooper through all this and she amazes me every day. Emily I love you more than anything else in the world.