Home, Let Me Come Home

I came home Thursday afternoon. It was a rough journey. There’s a lot of road construction going on between my parent’s house and the highway so we’ve been going over the dirt roads to get to Dartmouth. This obviously wasn’t possible going home because of my fragile state. It’s seriously amazing how many road obstacles there are, like isn’t this hard enough already? Apparently not, so the 15 minute drive to the highway now takes 30-60 minutes just for kicks. Route 107 for the Vermonters out there reading this. Also Bethel, fix your goddamn roads over Lympus.

The very awesome art piece that my former co-worker Linda made for me

The very awesome art piece that my former co-worker Linda made for me

Not sure if I’ve detailed what I’ve got, so here it is to give you an idea of what moving is like for me.

They removed skin and tissue all across my stomach a couple of inches below my belly button and stitched it internally with dissolvable stitches and glued the skin together. This means that my belly is tight and I have to be careful to keep bent a bit so I’m not pulling on it. It also means there’s an incision all the way across it that I need to be careful around. There’s also the drain that goes inside that’s another inch below the incision and has a gauze pad around it to protect it. There’s also barbed wire coming out of my belly button. Ok that’s not true, but my belly button had to be detached and reattached (yeah I didn’t know that could be a thing either) so it’s looking messed up too. The belly incision doesn’t have anything over it, but I’m starting to get used to seeing it. I can’t really wear anything with a waist because I can’t have anything rubbing against it, so I’m living in the very soft robe that someone got me from my registry (thanks Maia for picking it out). The sick/hilarious part is that my stomach is the flattest it’s ever been. If you ignore the tubes coming out of me, scabs, bloody belly button, and bruising: I’m ready for Sports Illustrated.

The other surgical area is under my left arm pit. They did the mastectomy sort of underneath my left breast and all the way to the side. This is great because once I’m healed it won’t be very noticeable. It is also probably better because it it was underneath where the biopsies had been and the tumor was there would be more friction on it. The stomach area is the more sore area because it gets moved any time I move (just like Ludacris said in Stand Up), most of the time the mastectomy area isn’t painful. I also can’t really see it without a mirror. I also have a drain in that area. There’s a lot of bruising and swelling right now so after one look in the mirror, I’m going to pass on doing that for now. The word “frankenboob” comes to mind. Just a little too much for me to take in. However just looking down it looks mostly normal and I’m glad that I decided to do reconstruction with the surgery. I think it would be really hard for me to deal with if I’d decided to wait or not move forward with it. It’s good to have at least one thing that I feel sure about making the right decision on. Also there’s apparently been a little confusion around this so to clarify, they did save my nipple so no tattoos in my future there. That’s all for your nipple updates.

So I’m fragile right now and for the next few weeks at least. The ride home was extra long because we had to go mostly a non highway route to avoid dirt roads which would have really hurt. As it was, all Vermont roads have a fair amount of bumps due to the frost heaves up here. Of course all the big bumps were in the last 15-20min of the trip so I was nice and sore (get it together Pittsfield!). The worst part about all of this was my poor Dad was driving so it was like he was causing me pain (for him, not for me of course). It wasn’t an easy trip for anyone. He also thought I would be excited to be going home, but really I was scared, which deflated the happy mood a bit. Going from having professionals to take care of my every need 24-hours to being an hour away from the hospital is scary. I’m good now though, after I got through the first 24 hours without anything happening things got easier.

My and my bouquet of pirate unicorns from Jeanne

My and my bouquet of pirate unicorns from Jeanne

I managed to get up the stairs without a lot of issue and have been set up in my bedroom since then. I did go downstairs for a bit yesterday because it got too warm up in our room. I also had a solid meltdown yesterday too that had everyone good and freaked out, A. got to come home from being out for a bit to me sobbing in the living room. I am a joy to be around.

Most of the time I have my pain managed, but every now and then it gets bad and it’s hard for me and everyone here. I don’t have anything fast acting so we have to treat it and then just hang in there until things get better which isn’t easy. I also have bad mood swings which I think is a combo of pain, drugs, and the overall situation. I wouldn’t say that I’m dealing with the big picture, I just try and deal with each day so that’s kind of on the back burner. I’m making plans to see a counselor once I’m physically up for the trip back and forth and then I’m hoping they can help me work through things and figure out how to control the mood swings through treatment. Most of the time I’m kind of neutral, but randomly I’ll get really sad or really upset (like sobbing in the living room), then at other times I’ll feel really really good and energetic. I haven’t found any correlation to the drugs or anything else, it would be easier if we knew that at like 6pm I was going to be emo or at 4pm that I was going to be really happy, but no patterns. Just another thing keeping us all on our toes. When I’m feeling good I try to call people because it’s much easier for me to talk to people at these times, when I’m feeling bad I don’t answer the phone, trust me it’s better for both ends. I also try and be really verbal about how much I appreciate and love my Mom, Dad, and Anton when I’m in one of the good cycles. I hope it helps offset the times that are hard on all of us.

A. has been amazing. It’s a lot for him to be taking care of me without the aid of nurses. For example, he gave me a washcloth bath this morning in a chair that probably took a half hour and was super stressful for both of us and painful for me at some points. So about that thing about sponge baths being sexy, when you actually need them they are so not sexy at all, they’re awkward and stressful. It’s a lot of responsibility to take on all this for someone you love and I feel incredibly lucky I have him. I still have anxiety issues of being left alone (thanks again recovery room nurses) so it’s hard for him to be able to take some space even with my Mom and Dad around right now. I can’t imagine doing this without him and in some of the tough times he’s my motivation to do this at all.

One of the questions I have the hardest time is “how are you feeling?” It’s such a complicated question for me and how I’m feeling at that time isn’t really a great insight into how I’m feeling overall. I am feeling in very small ways, better each day. I have more mobility and less pain overall, but at the same time I may have serious pain at some point that’s as bad as it was when I first got home. So I am getting better, but there’s not really an adjective that I can use to describe how I’m doing. I also know it’s hard to talk to someone in my situation without asking it so no harm no foul. Another thing I wanted to address is that I am not going to get better soon. It’s not going to happen. Chemo is going to last for months and then I’ll have another surgery to fix things up after that so I totally appreciate that “get better” sentiment, but getting better soon is just not going to happen. Another tough one for all of us, it’s hard to tell someone to get better next year, but realistically that’s a better time frame for me. Otherwise you’ll have to be more specific like “I hope your belly incision gets better soon” “I hope your belly button doesn’t look like it belongs on Walking Dead soon” “I hope your drains get removed soon”, fun stuff like that.

Today was a good day mentally. There were a couple of tough moments, but overall I’ve been pretty up mentally and not a lot of pain. I also had a few visitors come through which was really great. Seeing people is pretty awesome.

The crayons and coloring books we could use if you come visit me (also from Jeanne)

The crayons and coloring books we could use if you come visit me (also from Jeanne)

Over and out…

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