The Words Beneath My Fingertips

Every year new tumors grow. As I said in my last entry, I have pulmonary nodules.   I also have this weird blob like thing in the right side of my lung. I have been monitored to make sure they remained stable, etc. They were first found when I had a PET scan last August (the PET was done to ensure my NF tumor wasn't cancer and to see if my liver tumor was visable- there was no liver tumor as other MRI's suggested). I had a follow up in November- no change. I was actually excited to get a chest CT at the time I did- I haven't been breathing right. I don't feel that 'refreshed' feeling when I take in a deep breath. In order to get that 'refreshed feeling' I have to REALLY breathe in HARD. So I wanted to see if the nodules were bothering my airways (I was told they could bother my airways, so I assume my nodules are the culprit) Well this is what it says now: (this is my CT scan) Lungs and airways: Examination of the lungs demonstrates that the 1cm gr...

This past week I had two scans: 1) of my chest and 2) of my pelvis. I had the scan in my chest because I have pulmonary nodules . I am supposed to get them checked every 6 months. At the end of June,  though, my chest started feeling really tight. I saw my pain doctor about it, and when she felt around my ribs, she felt a squishy type bump.  So she had me get a chest x-ray but nothing came up. I didn't worry about it because I knew I'd be getting this chest CT eventually. However this week I have felt like an elephant has been sitting on my chest. I can't really take in deep breaths. So I was extra glad to get that CT done! Perhaps my husband got me sick- he had a similar feeling in his chest last week. Anyway, I'm more anxious about my pelvic MRI. My last pain spell, which lasted from June 20th until July 3 really took a toll in me. This was different from my other fits of pain. It was REALLY strong, and it lasted a REALLY long time. At one point I cried. I...

There's a lot I want to say but it's hard to organize my thoughts.  I'll try! It's very late as I'm typing so forgive any typos. On Pelvic Pain A few months ago (February), I made this video: In this video, I was describing my recovery from my SECOND abdominal surgery, and how I was feeling from there pain wise. At the time, I was on 2400 mg of gabapentin. But a few days before I actualy made this video, I had a TERRIBLE case of bronchitis. I had so much medicine to take that I stopped taking the Gabapentin. It made me terribly 'foggy' and I was having so much trouble participating in class discussions. I was taking the Gabapentin because  after my surgery, I had terrible referred pain- exactly opposite of my surgical area was this intense burning sensation. Gabapentin saved me! But I realized a week after stopping the Gabapentin  that  I no longer had that burning sensation! So  I stopped it for good. It made me WAY loopy. I couldn't focus, ...

Just so you know, I'm writing this with a lot of meds pumped in me so it's not very eloquent at all... If you follow me on this blog and/or even on Facebook, you know that I am very open when it comes to talking about NF and the pain it causes me. I talk a LOT about what pain does to me physically. But I don't really talk about what it does to me psychologically. Before my surgery last year, I was dealing with this pain with NO medication. Well, I was taking medicine (Tylenol, etc) but it did nothing for me. So when I wrote about pain, it was often with very explicit language. I was about to give up. I was even suicidal. Nothing was helping me. So now I am on Oxycodone for it. Not every day-- just for the 10-15 days the pain attacks me.  It actually HELPS. So when I have a pain spell,  I know I will get some relief after I take it, even if it's temporary, so I am definitely NOT in as much distress (though the pain is still astronomical so it IS distres...

It is about 12:30 am, and I am sitting here on my bed with my cats eyeing me from my doorway because they have not been fed a small bedtime snack. My parents are in the other room resting from a long day. My graduation gown and hood are hanging up- ready for tomorrow. I cannot believe I am graduating with my Master's degree! I want to talk about my tumultuous journey, but first I have people to thank. So many people to thank: My husband for being my backbone, and every now and then paper editor My family who was always there for me My professors and boss who wrote my recommendation letters My friends who helped me revise my personal statement when they were already busy with their lives My primary care doctor who helped me manage my pain and took care of me well- I would not have finished my program without her My pain team for being on top of everything and keeping me sane My current boss for being an AMAZING MENTOR My friends who always cheered me on!!! and encouraged me...

I haven't written an update post in FOREVER. I've just had no time. Between school work, studying for Comps and more school work and applying for jobs...yeah. Now that school work is dwindling, my comps are over (and I passed!), I can write this long overdue blog about my GD esophagus.Not NF related, sure, but I am perpetually recovering from stomach cancer surgery, so yeah. Anyway, I've had problem swallowing since maybe February. Well, ha, I've had problems swallowing since my damn cancer surgery, but it got worse. So did my heartburn. I was worried. So I had an endoscopy in the beginning of March. This photo below is BASICALLY what I had done in 2009- after part of my stomach/esophagus/GE junction were removed, they fundoplicated it back together: It's not exactly like this because in this photo, the IN TACT stomach was wrapped against an IN TACT junction/esophagus. They took what was left of my stomach and wrapped it around what was left of my esophagu...

My best friend/sister-from-another-mister, Liz, ran, for the second year in a row, on behalf of me in the CTF Cupid's Undie Run in DC. She raised almost $1,300 for NF research!   This was her last year, in mid run: She flew us down to DC so we could see her run this year <3   I wanted to get her crossing the finish line- it was all sort of confusing and fast. And I failed.  But this was her with "Teddy Roosevelt" And with me and me again! A lot of tourists took this photo too. We're pretty famous now. We are going to run with her next year! (yes, that means John, too!) I thought I took a video of the entire start of the race, but I never hit 'record'. I only have the last 11 seconds of it. Double fail. So the first part of the video is the last 11 seconds of the start of the race, and then a few seconds of the commotion AFTER the race: And so everybody knows: Liz is one of the most beautiful and generous people I ...