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.
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.
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!
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!
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!
Chemo sucks. I can’t say more than that really. I mean I shouldn’t complain because compared to the summer it hasn’t been all that bad (at least i’m not puking my brains out) but it still really, really sucks. Monday through Friday 730 am to 5 pm I sit and get pumped full of so much crap it amazes me. The number of bags hanging is ridiculous at times, and the fluids they give me is nuts. Monday I came in and got weighed before chemo (so they can give you the right dosage), Tuesday I came and got weighed and was up 5lbs! Wednesday up another 2.5lbs. The fluids are insane, I get 6 liters a day… and with my kidneys I retain soo much that its scary. Yes, by today I have peed 90% of it out, but it scares me, and is laughable at the same time.
As for chemo itself, it is sooo boring and tiresome. I cannot watch daytime talk shows anymore! I feel just as bad for my mom because shes suffering through it with me, and I am not good chemo company. I barely talk, I sleep A LOT (because I am drained, and really bored) and I get moody. I dont feel well, I feel exhausted and nauseated and just in general like crap. The worst part is the nausea by far. I spend the day feeling and wanting to throw up, but it doesnt come, or if I do, I still feel like crap. Having this feeling for 4 days straight is the worst (Mon. Im usually ok) and then having this feeling linger into this week sucks really bad too.
I think the worst thing about this chemo is the awful taste i get in my mouth. I cant explain it, and dont want to because its so bloody awful. I sucked on Lolli pops all week to try and mask it, but if I get it full blown i start gagging. Its gross.
I had a few visitors this week. My Aunt Pat, and cousins Patrick and Lucas stopped by and hung out Tuesday. They brought me some of those lindor truffles, the really really good ones which was nice. I had one, because sweets dont interest me on chemo interestingly enough… My cousin and bridesmdaid Randi came to the hospital a few days and stayed at Ronald at night with us. She goes to NYU in the evening so she hangs with us during the day. She is good to have around as a distraction, and she helps entertain mom. I love having her there because nothing I do or say bothers her. And she LOVES my nub. My dad is also there every night. He comes in and out of the city and stays at Ronald with us and goes to work every morning, except Fridays when we have him all day. He gave blood at Sloan on Friday which was awesome.
I also met some NYC marathon runners from Fred’s Team, the team that runs for the pediatrics unit at sloan. They have raised over 50 million for the hospital and cancer research. I have convinced my sister Kelsey and her bf Jon to run in the NYC half marathon (13 miles) for Fred’s Team in March. This will be awesome!
So, I asked the doctors and my wish was granted. Chemo starts this coming Monday for the week. So if you need me I will be in NY all week along with my chemo Mom. (Thats my new nickname for her because she has decided to take off the entire week and stay with me instead of juggling trying to find people to come, and I am okay with that of course…I might love it a bit because its constant, of course we get visitors who stay different times, so the change in pace is nice too!)
Surgery is now scheduled for November 26th after my two weeks of recovery. This means Thanksgiving at Aunt Di’s is a go! Aunt Di it better be epic!!!! We usually have over 30 people there, all family, so its a big event.
I have just been hanging out watching the devastation in NJ and NY wondering how this is going to affect my treatment, so we will see as time goes on because I know a lot of patients have been affected already, but Sloan remains open and going strong! Last night we watched the Benefit Concert and donated, its hard to believe this has happened here, but we were soo lucky that we did not sustain any permanent damage (lost a lot of trees and one big one almost took out my ramp but it didnt!) and we have had power the entire time. I have friends that are still out of power, its unbelieveable, and any time you go out you see those gas lines going on forever. Rationing gas? Our generation? Wow.
I went to the prosthetist two days ago to get measured again. Yes my nub is shrinking nicely, but I am getting impatient. I want a leg! I want to walk! I want to be independent again! Well, some good news, on Nov. 12th I go back to get casted! That is the first step in this process, so I will document it all and keep everyone posted on how it all works because I sure don’t know!
We survived the hurricAne! We have power and never lost it, lucky lucky us.
They want to reschedule my surgery for November 9th but I am not happy with that. That would mean no chemo for three weeks, and that scares me. I don’t want to let anything have a chance to spread and grow at this point. (Osteosarcoma s. beast) It’s been only 6 weeks is since my amputation, and its too soon to have time off. With what happened over the summer with chemo and time off and tumor growing I am a bit paranoid. So I called Paulette (my favorite NP) and she’s gonna see if I can do chemo on Monday and then have surgery after my three weeks. So we shall see. So I am enjoying a week off right now, stuck in the house because of Sandy again!
So, the impending Hurricane Sandy has forced my surgery to be postponed. We live in NJ, right about where the storm is going to hit land, so we are in a mess. NY is also being evacuated in certain places, so that’s a mess too. Yesterday afternoon the surgeon called personally to tell us that he did not think it was worth the risk of coming in and all the chaos to do my lung surgery because its not an emergency and its not pressing. Well, not pressing for him. Me, I am anxious, not of the actual surgery, but of everything that comes after. Will I be able to get up and do what they need me to do (walk) to heal correctly and quickly and avoid side effects like pneumonia. The other thing thats really on my mind is IS this Cancer? The biopsy couldn’t come soon enough. Granted we would know if it was basically when he was operating because if he finds small bone in my lung, well duh, thats a dead giveaway, but i’m hopeful he doesn’t. I am also concerned about postponing chemo too long. As we have seen osteosarcoma is very aggressive so I don’t want to give it any time at all to latch back on and start growing anywhere else.
On a good note, the wedding went really well, Ryan and Lisa seemed really happy, and it was great to be there to celebrate with them. I will try to post some pictures later of this on this post.
So, on Sunday I went to the Drexel Alumni softball game (as the doc said I could go since it would be outside and not too crowded) It was really nice catching up with all the girls, and the team has made up some really awesome Drexel Softball t-shirts in support of my fight. It is nice to have my Drexel family supporting me in this battle!
I also received a nice gift from my friend Michelle who knows what I am going through with my phantom pain, and she sent her best advice to deal with it! And I got my handicap pass… which is awesome, but when I saw on it “permanetly disabled” I couldnt help but tear up a bit. Permanetly. ugh.
Tequilla and Sandwiches!
The Pie your TA or Professor event was today at UNCC. I heard that it was a big success, and its just my other UNCC family stepping up to support me. Kris and I spent from 2009 to 2011 down there in charlotte, nc and both of us will tell you it was the best time and that we are moving back. We love you guys in NC! Thanks for the continuing support as well!
Today we were back at Sloan to meet with Dr. Laquaglia. He will be doing my thoracotomy on Monday the 29th in the morning. What he will do is make an incision in my back right under my shoulder blade about the size of a pen (enough so he can stick his hand in there!) He will pull aside the muscle (not cutting that-thank god) and deflate my lung. He will then find the spot hes looking for and cut it out, then staple or sew the lung back together. He will then use his hands to see if he can feel any other spots because osteosarcoma remember is a bone cancer, so small hard bones will be present (but we all are praying they are NOT!) He will then remove those, place a drain, re-inflate the lung and close. I will be in the hospital for about 5 days. The tricky part of this is that healing for lung surgery requires a lot of walking… which is obviously not the easiest thing for my to do at this time. So I’m sure everyone will be pushing me to get up and walker around as much as I can, and I know I will complain, but I will for sure do it.
Chemo will start the following week, which if all goes well means that I may be able to have a normal Thanksgiving!