Since the diagnosis

We are home from Philly now and I've been so surprised at all the people ive ran into who keep telling me that they keep looking to my facebook and blog for updates. So here we are again, blogging, which is pretty uncommon for me. But you've got to give the people what they want, right? :) Not to mention I don't keep a journal, so this is a good record keeping for me too.

So after my diagnosis on Monday the 18th, we spent tuesday and wednesday being tourists. To be honest, I spent half the day Tuesday in bed, feeling depressed and sorry for myself. I know how important it is to stay strong, because this is going to be a long journey, but I NEEDED to process and feel the things I was feeling, good bad, weak, strong. Self pity is not a good thing, but im glad I had that half day to feel weak, because I think it will help me to stay strong in the long run. So then I shook it off and spent Tuesday afternoon at the independence hall visitors center and the constitution center where they had an exhibit with pulitzer price winning photographs over the years. Very sad, but very cool. That night back at the hotel an old friend from high school, Heidi Norton, facebook messaged me. She is living in Philly for grad school  and we made plans to go to the Muetter museum the next day. So thats what we did Wednesday. The museum had oddities and curiosities of the human body. Very cool, and it was fun to see Heidi. She took us to one of her favorite burger and shake joints in Philly.

I have to applaude Charlie for figuring out the train system. We tried monday, and it was a disaster, but he figured it out for tuesday and wednesday and it saved us a lot of money on cabs and was fun to ride the trains.

My dad was sweet enough after my diagnosis to ask if i wanted my mom out there with us. Of course I did. I dont think anyone would ever say no to having their mom with them for something hard like this. So he booked her a flight with the help of a buddy pass from Jenny and Will and she got there about midnight on wednesday. I was still awake so I showed her all the paperwork and packets they had given me on melanoma and the surgery. I dont remember what time we finally went to bed, but it was late.

We got up early the next morning to be at the hospital by 6:30. After some waiting, paperwork and registration they took me back to a room where Dr. Carol Shields came in and marked my forehead to ensure they treated the right eye. They we went back into a crazy busy room where they had probably 8 patients or so, all prepping for surgery, separated by curtains. I changed into a gown and they started prepping me with eye drops, IVs, ect. The nurse had a hard time finding a good vein in my hand and ended up spraying me and the bed with my blood. I remember being wheeled into the surgery room and them putting something in my IV. They had previously told us they would use 'twilight sleep' for sedation, which is just a chemical that doesnt put you out, but makes you unaware of whats going on, but afterwards they said it wasn't working well enough on me, so they put me under general anesthesia. In the paperwork about the needle aspiration biopsy it says that in some situations, they cant get a good biopsy, but they dont know until they try, and sometimes they end up not doing it. No one talked to us about how the surgery went, so I assume they did the biopsy, but I don't really know :) They also placed the metal plauqe with the radioactive 'seeds' and sewed it to my eye ball, then sewed my eyelid shut. I woke up with a wicked sore throat but felt pretty good initially. After just a few minutes my eye started really bothering me, so they gave me pain meds through the IV and once the pain was under better control they sent us on our way. I had a HUGE patch that covered a 3rd of my face and included a lead patch to keep everyone else safe from the radiation.

They require all their patients to stay at the hilton, because its so close and they have made arrangements with them, so we waited for the hilton shuttle. Because I had been under general anesthesia I was still pretty out of it and I really dont remember much, but once we got to the hotel the room wasnt ready so we waited in the hotel lobby and i slept while Charlie and my mom did who knows what.

From thursday to monday I don't have a lot of memories, I just slept most of the time. Chuck tells me I slept probably 20 hours a day. I was on some heavy duty meds, so I wasnt too uncomfortable. Im told that I apparently called a few friends while Chuck and my mom were downstairs getting food at one point and left some people some funny voicemails :)

Thursday morning we went back to the hosptital for them to take the plaque off. They tried the 'twilight sleep' on me again and apparently it worked well this time. I do have one memory of being aware of what they were doing during the surgery and kind of cringing, but then shortly after I lost my 'awareness', so I assume they just added more meds. I also woke up with my hand tied to the bed, so im sure I was giving them trouble during the surgery. My patch was much smaller after this surgery. We then went and scheduled a follow visit in 4 months, and got discharge instructions. Here are the basics:
-Im supposed to wear glasses instead of contacts from now on. I clarified if this was specific to cancer patients, or a general rule, and they said a general rule, because its just safer for the eye, and I can still wear my contacts for 'special occasions'
-I need a 2 month follow up with my eye docs in Ut, a 4 month follow up and an 8 month follow up in Philly, then approximately every 2 years in philly as well.
-No driving and no heavy lifting for a week or so (baby included, even though ive been lifting him anyways because how can you say no to him :)
-No makeup on that eye for 2 weeks
-The eye will take about a month to look and feel back to (about) normal, but I could be left with a little bit of a 'droopy eye' effect
- I need to find and get in with an oncologist here in Ut. For what in honestly not sure, they already gave me all the follow up info on screenings and what not, but I dont need to do that for like 4 months. So im not sure what im supposed to see the oncologist for now.
-I have an eye drop and an ointment that I will be using for 6 weeks.

Thats really all I can remember right now.

We stayed one more night in philly and flew home early tuesday morning. I could not wait to get home to my Wesley. I cried like a baby when I saw him and got to hold him. When he saw Chuck and I he just stared for a minute, like 'you guys still exist?' but was very happy to see us and gave me the biggest hug, he did not want to let go, but I needed to use the restroom, so I handed him to Chuck and he started screaming. Im sure it is so confusing to him as a 10 month old for mom and dad to be gone for a week. He was definately acting out the first two or three days after we got home, but now he is doing much better now and has been sooooo cuddly and happy. We dont have to be holding him, but if we leave the room he lets us know it is NOT ok. For the most part he has left my patch/glasses/eye alone.

The eye itself has been surprisingly ok. Its pretty beat up. I thought about posting a picture, but its pretty grusome. Luckily you dont really get the full effect by looking at the eye from a normal distance. But upclose and personal its pretty rough looking. It hasnt been too painful, but I am still taking pain meds about once a day. Its swollen and weepy, and I feel like im constantly wiping my eye, which is getting really obnoxious. It has been kind of hard to keep open, but if I keep the right eye closed, my left eye gets pretty tired, so im trying to keep both eyes open. My vision in the right eye is improving fairly quickly, but I still cant see well enough to use it properly.

I am still very fatigued and occasionally break out in cold sweats. Most of the time I can be up and going, but I get hit by waves of exhaustion and I just need to lay in bed for a few hours each day. I learned my lession yesterday when I just broke down in tears from being too overwhelmed and trying to do too much. I need to learn to pace myself and slow down because my body is still healing. Luckily I don't have to go back to work for a few more days, im hoping ill be up to a full day of work. Ive already talked to them and they will have me at a desk job for a month or so instead of the much busier MA position I usually do.

Again, ive been completely and uterly blown away by the kindness and generosity of people. We had help with Wes, meals, laundry, cleaning our house, financial donations, support through social media, and an outpouring of love and prayers. I feel your support and I still need it so much. Ive never been good about 'staying down' after a surgery or an illness, and im not good at 'pacing myself', I always try to just dive back in head first, but my body is definitely telling me this time I wont be able to do that, so keep sending prayers my way. Thank you for all your love and support :) I dont have any pictures to post right now, ill have to get some from Charlie and add them later.