Aside

It is with great sadness that I want to let everyone who has not heard know that Jessica passed away last night due to complications from her surgery last week. We will be having a memorial service for her on Thursday, December 6th at St. John’s church in Lakehurst, NJ at 11am. In leiu of flowers, we ask that donations be made to the Ronald McDonald House Manhattan. Please keep Jessica in your prayers.

Advertisements

Take a deep breath… lung surgery, it kinda sucks

Standard
Image

Jessica getting a check up from Nurse Michelle

On Monday, I had my very first thoracotomy, also know as lung surgery. Since I am a peds patient, I got scheduled for the last surgery slot of the day, so I didn’t get in for pre-op until 2 o’clock. In pre-op they accessed my port, gave me an epidural. This was my second epidural and they hurt, they really do. But once they’re in, they work wonder. So if you ever need one, I would do it– it’s worth it. This second epidural was higher on my spine to numb my torso area, unlike the first epidural for my amputation which numbed from the waste down. It was really interesting being numb in the torso– I could barely feel my boobs, which I thought was funny.

The doctor came in pre-op to initial my shoulder. Ironically her initials were “KB” like most of my family– I thought that was funny too. It was after 3 o’clock by the time they brought me into the OR, and it felt like a few minutes later I was out.

So even though I wasn’t awake this is how the surgery went down: They cut me open and made a 9 inch incision, under my right shoulder blade. They deflated my lung, and the surgeon went in with his hands to feel around for any cancerous spots (osteosarcoma is bone cancer so you would be able to feel little bone in the lung). Three different surgeons manhandled my lung in search of cancer. Afterwards they inserted a chest tube to reinflate my lung, and closed me up (I have no stitches because they used a glue technique).

I woke up in the recovery room by myself after 7pm, to hear the wonderful news,( if you haven’t already figured it out), that they found nothing whatsoever in my right lung! I gave two thumbs up and had the biggest smile. This means that I am officially in remission. Technically, I am c***** free, but I’m afraid to say it right now. I don’t want to jinx myself. I need time to let this sink in, but its wonderful news. Its the best news I’ve had in 6 months.

They let my mom come and see me. I remember telling her that this pain was a lot worse then the pain after my amputation. They started drugging me up and within a few hours I felt much better. Who wouldn’t be feeling better with the wonderful news that I had just recieved?

The rest of the crew got to come in (Katie, Kris, and dad) and I spoke with them all briefly, but I was pretty out of it. We had to stay in the PACCU (recovery room) overnight because I need to be watched for 24 hours and because the pediatric unit where I usually go was occupied and had a chicken pox outbreak.

My mom talked her way into staying overnight, and they wheeled a bed in next to me for her, which she felt weird sleeping in. The night went by fast because I was chatty, and I had a nurse that just sat and listened to me. My pain was managed well and I have no complaints about any of it.

Tuesday we moved to a room up on the 18th floor of Sloan-Kettering and I’ve been here ever since. The hardest part about this for me is that when you have thoracotomy they want you to walk around. This may seem easy for people that have two legs that can just walk without it affecting their shoulder where they just got cut in to. For me on the other hand, with my one leg (if you forgot, I had an above the knee amputation), walking is a challenge. I have to use my arms to walk with a walker. So every time I take a step I am in pain. The first time I tried to walk I was very scared to use my upper body in fear of how much pain I would be in, but a stubborn occupational therapist named Amanda forced me into doing it. It wasn’t as bad as I thought, but by day two I did a full lap around the whole floor- I sweated like a pig and slept the rest of the day, but it wasn’t so bad.

Yesterday I also had to get some blood because my hemoglobin was so low, but besides that, everything has gone off without a hitch.

Image

elephant sucky thing!

One of my favorite things about this process was my sucky, elephant friend (called an incentive spirometer). You have to inhale in as deeply as you can and it measures your progress, helping build your lung capacity back up. I find it challenging and something for me to try and surpass my best score. It keeps me excited and entertained.

Were being discharged today after only a short four days. So, I get a nice long weekend at home, and we start chemo on Monday with the wonderful, wonderful news that I am in remission.

I just want to say thank you to all of you who have shared my story and have prayed for my recovery and health and all of your friends of friends of friends that did the same. It is clear that God did answer all of these prayers, and I really appreciate all the love and support that I received and continue to receive. My family and I really appreciate it. Thank you all.

Shout out to Kelsey and Jon on their engagement. Congratulations! Planning will give me something fun to do while I am in chemo!

PS thanks mom for always being there for me. I love you very much, and dad too!

Before and After… Jinxed Big Time!

Standard

So about 2 months ago I had tons of people come up to me and say, “well at least you still have your eyebrows” or “wow your eyebrows didn’t fall out” or “why didn’t you lose you eyebrows?” Well, all I have to say to them is thanks! Thanks for the big jinx! I have noticed over those past two months my eyebrows slowly fading away. And to top it off, its not just my eyebrows, its my eyelashes too! They started looking lighter and lighter, then shorter and shorter (they started by my nose, but ended in the middle of my eye) Well, now they are barely there, and when I take a close look in the mirror I can count on two hands the number of hairs that remain standing. Eyelashes, I think I have six. But rest assured I put mascara on those six when I go out!

Just so everyone knows, and I can no longer get jinxed I will fill everyone in on what hair I have, and what I dont.

Have: arm hair (weird) and little hairs on my belly-thats about it.

Dont Have: hair anywhere else- including nose hair so my nose will randomly drip… its gross but what can you do

 

SO thats about it. And heres a picture to show you my lovely before and after mug shots!

Left….now Right….then

Prostitute….Prosthetist

Standard

So, prosthetist is pronounced like prostitute, for all those who are curious. My mom still can’t say it! My prosthetist is Cindy, and her partner Mike. These are great people, who genuinely care about what I want and need, and my well-being. Their office is 5 minutes from my house so I will be able to get to them if I have any issues quickly and easily.

So the process for getting a leg thus far has been

1) get my leg chopped off

2) wrap you leg with ace bandages until my sutures came out

3) wear a shrinker (a big compression sock, that looks like a giant jock strap for your nub)

That is where I have been… for over a month now. Every week or so I go see Cindy and she measures how much my nub is shrinking. Last time I went, Mike and Cindy did much more intense measurements of my good leg and my nub in preparation for my casting.

Monday I go to get casted, where they will mold me nub so they can make me a socket. I am going to try and take pictures to document this whole event for the blog.

Tuesday I go in and try on the test socket. This is a clear see through socket made from the mold that I will put on and they will look to see how it fits and if it needs any adjustments.

After that they can start building the real thing and making me a leg. THe goal that everyone knows is I want to be walking by christmas, so while I am going through surgery and chemo, Cindy and Mike will be making my first leg!