Finally Some Good News

It is not such great news because my bone is still not healed BUT my metal has not shifted which is a great sign. I have been making trips into the city to see my Dr every 6 weeks for the past 15 months but on Thursday he said he does not need to see me until Feb of 2009! I am very happy about this. I will always worry about my foot, probably for the rest of my life but hearing that I did not need to come back eased my worries a tad bit.

It Has Been Awhile

14 months and 2 surgeries later I am still in the same spot! Thankfully there has been no tumor recurrence! Bad thing is my 2 bone graft surgeries did not work! I saw my Dr almost 2 weeks ago and he said he feels I should be able to walk on my foot without the metal and screws breaking or coming loose. I have to wear sneakers only, if I would have been told this last year I would have been so sad but now I feel full of joy, as long as I do not need this 3rd surgery!! If a problem does occur I will need what is called a free vascularized fibular graft....UGH!

I have been in my sneakers for almost 2 weeks and so far so good. I have pain only in my ankle because it is stiff from not using it in over a year. The Dr does not want me in physical therapy because he is afraid the manipulation can damage the metal. So I am happy! I will be even more happier next year when I reach the 2 year mark. I was told when I was diagnosed with Giant Cell Tumor that we would have to wait to become pregnant for at least 2 years. I am eager to add to our family and pray that can start next Fall.

I will be back when I have some more news!

1st Follow Up Visit

2 weeks down a few more to go!! April 10th was my first follow up visit with my Dr since having surgery. I had an xray done and everything seems to be in place. Unfortunately I am now in a hard cast. My Dr wants to make sure that my foot is totally immobilized, which is good for the healing process. The cast is uncomfortable but nothing I can't tolerate. I had my stiches removed, and I kid you not, when I say it was the worst pain I have ever endured. My hip feels fabulous, I am just sore but besides that I have no pain....thank you God! So I got the OK to go out an do things, but if I feel throbbing (which I will because of the swelling) I need to elevate my foot. So other then this being annoying, it really isn't so bad. I guess I have become use to being somewhat immobile. Luckily I my daughter to take my mind off of this, she does something new and amazing everyday, it really is so awesome! Tonight will be my first outting and I am so excited, nothing crazy just out to dinner but with my 2 favorite people, Chris and Jules!!

Some Good News For Once

Just an update...I got a call from the physicians assistant at my surgeons office. She let me know that they received my pathology results. The beauty mark they removed, was as I thought, nothing. The lump that they biopsied on the bottom of my foot, is nothing to be concerned about. It showed fibrous tissue, which is basically an inflammation. So good news to start my recovery period.....only better things are to come. I am so looking forward to walking the boardwalk, down the shore with my family this summer.

I Have Survived My 2nd Surgery

I am now 5 days post/op. Surgery went well I guess. He removed bone from my right hip this time and also added OP-1 (Osteogenic Protein-1) aka (BMP-7). It is used to stimulate bone growth. I am still learning about what this is exactly. I was told 30 minutes before surgery that I would be getting this. I was a bit upset at that, because I like to research everything before hand. I had an epidural and PCA pump for a day and a half to help with the pain, but it just make me sick to my stomach. He biopsied a lump that was on the bottom of my foot and also removed a "suspicious" beauty mark, I haven't gotten the results on that but I am so sure it is nothing. I am doing much better with the nausea but for some reason the pain is much worse this time around. All I can do now is pray to God that this bone graft takes. My Dr said it will take 3-6 months to know exactly how well it is healing. I am just really looking forward to a happy summer spent on the beach with my beautiful family. I hate to be so sappy but I really love my family I don't think I would ever be able to survive all these surgeries without them. They help make my pain better, especially kisses from Julia!! I also need to mention how wonderful Hackensack Medical Center is. The hospital itself is just so clean and the Dr's and nurses from pre-op to recovery to my room were just so caring and comforting, it made a horrible experience a little bit better. So with all that being said our fingers are crossed, praying for this tumor to be gone and my bone to heal nicey nice!!!

SURGERY #2 HAS ARRIVED

So this Friday is the BIG day. I know this will be my last surgery and I will be walking like a pro by summer time BUT I am still scared as hell. Even though I know what to expect I am still scared. The thought of entering that cold , bright OR with 15 people in scrubs, freaks me out. I am not going to lie I was in pain after my first surgery but the pain part doesn;t scare me, it is the major anxiety attacks and hallucinations I had after. The Dr said it was from after effects of anesthesia or from a feeling of being trapped sinced I could barely move. Whatever it is the worst feelings in the world. I am not looking forward to being woken up all night to get my temp taken. AHHHHHHH WHY ME????? This tumor is so friggin annoying and the fact that it is so unpredictable pisses me off! I haven't gotten a decent nights rest in a week I am totally stressing out but I need to just chill and work on my speedy recovery. Soon as I feel up to it I will be back with an update.

Surgery Scheduled

OK it is all set. My 2nd surgery is ready to go March 28. I am really not even nervous. I am just hoping this recovery is better then the last. I have a very good feeling about this one. I go for an MRI tomorrow for the lump on the bottom of my foot. Hoping that comes back as nothing major that way all I have to worry about is this next surgery. All I need is my clearence for surgery. I am actually happy that I get to celebrate Easter before being layed up for a few weeks. So say some prayers for me!!! I will be back after surgery or maybe right before to say how scared I am hahaha. I think I am ok with this one since I know what to expect.
xoxo
Theresa

Happy Valentines Day

So today was my follow up visit with my Dr and unfortunately I have no good news. I had an xray done and he reviewed by CT Scan, my bone is what they call nonunion. He said the bottom of the bone seemed to have some cloudiness but definitly not enough. He is going to have to take more bone, but this time from my right hip (yay I can now have matching scars on each side) I will have to be non weightbearing again but he said not for long because he wants to get me walking to maybe stimulate bone growth. Once again there is a chance that this will not work and then I will need Vascularization Bone Graft, I didn't even ask him what that is but he did say it is traumatic and we are going from lease invasive to most invasive. For some reason I have a good feeling about this one.
I have had a lump growing on the bottom of my foot which he has said looked like Plantars Fibroma and we have been monitoring it. It has grown a bit since December so I need and MRI next week. He said it can be a Giant Cell Tumor, however, it is not characteristic of GCT. You know just something new for me to worry about. I am sure it is nothing but I am still nervous.
And now from not using my foot I have developed osteosporosis. I turned 30 and everything has went down hill. He wants me to start swimming so I joined the Polar Club and we will be heading down to the shore this weekend. Just kidding, I guess I can use the YMCA.
So thats my news. I have not scheduled the surgery yet. I am waiting for his people to call me to see what we can set up. We will be taking a family vacation in 2 weeks which is much deserved right now, and then when we get back the panic will set it. Actually I am pretty good. It is what it is. I am here and living, just some set backs, nothing I can't handle!!
Thanks for the prayers and positive thoughts
xoxo
Theresa

Just A Small Update

So as most of you know I had my chest xray and CT Scan of my foot. I have not seen the Dr yet but I did receive my results. The chest xray came back fine, which is some good news since I was worried about that. However, the CT Scan shows no fusion of bone graft. I know I should wait until I see my Dr but no fusion means no fusion. I am guessing I will need this surgery once again, once again put my life on hold for several more months. When I found out my results over the weekend I was just sad and depressed now I am just mad! I can't begin to explain how frustrating this has been. I still have some hope left that maybe my Dr will see some fusion that the radiologist maybe missed. WISHFUL THINKING! I did find a few friends over the nternet who have this tumor. It is some what comforting knowing there are people who can relate to me and who have some info. But it seems that this is such a rare tumor and even more rare to get it in the first metatarsal. One of the girls I met online started a group of people with Giant Cell Tumor which is a really great thing. This is the link GCT Connect. So even though I am mad as hell and sad I am not giving up. I know one day my life will be back to normal. What doesn't kill me makes me stronger right?

Some pictures of before and after surgery

This is my foot before my biopsy. If you look near my big toe down on the outside of my foot you can see the mass. This is my foot about 8 weeks after surgery this is the day they removed the cast. My big toe is much shorter then my second toe, he tried his best not to make it too short lol I think it is so funny looking! But hey atleast I have a foot!!
This is my foot about 10 weeks after surgery. It is still very swollen.

And here is the incision where they took the bone from my hip. This hurt more then my foot actually.

The beginning of my nightmare...sorry very long

This is my first ever blog so please forgive me I am just learning how to use this. I have been searching on the Internet for endless hours, days, and months for any info on Giant Cell Tumor and keep finding the same old info, I really wanted someone whom I can share my experience with, maybe someone who has been down the same road as I have. I never found anyone so I figured I'd start this blog and hopefully find someone either I can share some information with or someone who has some info for me. My name is Theresa I am 30 years old and living in NYC. I was diagnosed with a Giant Cell Tumor of the first metatarsal. Finally getting diagnosed took many months. I was experiencing pain on the top of my left foot, but associated it with my new shoes or long hours on my feet during my nursing clinicals. I let the pain go for 2 months and finally when I finished my semester of school I saw my general Dr. He was feeling my foot and said it did feel like tendinitis but he sent me for an xray just in case. He had given me anti-inflammatory and said take them for 3 weeks but if I were going to try to become pregnant then not to take them. When I went home and discussed this with my husband we decided we would wait and if I didn't become pregnant within 2 months then I would start to take them. I did go for my Xray which came back fine(so they say). So I just ignored the pain thinking maybe I was exaggerating exactly how bad it was. My Xray and Dr visit all took place in Jan of 2007. By the end of March my foot was excruciating. My Dr wrote me a new RX for the anti-inflammatory but when I went to pick up the meds I also picked up a pregnancy test. I got home and found out we were expecting a second child. I was so full of joy but panicked because this pain was just horrendous. I called my Dr who said to take Tylenol, that is all I could do. Finally the end of May I could no longer take the pain and also my foot started to swell up and felt warm to the touch. I called Dr who referred me to a podiatrist. I went to the podiatrist who said it looked like a lisfranc fracture and he sent me for an Xray. I hated to have the Xray being pregnant but my OBGYN assured me everything would be ok. I had the Xray done on Friday and Saturday I received the dreaded call from my podiatrist that I need to be in his office with my films and husband ASAP, he said there is something suspicious on the xray and he needs to see me. In his office he said that I have a bone tumor, whether it is benign or malignant we do not know. He did say that it destroyed most of my first metatarsal. I was hysterical. How can this be happening to me? I have a wonderful husband a 2 1/2 year old daughter and I am 10 weeks pregnant. I saw an orthopedic surgeon who had to recommend me to an orthopedic oncologist. The big problem now was that I was pregnant. The bone oncologist did tell me that he was 99% sure that it looked like a giant cell tumor, but most of my bone has been destroyed and that if I waited to give birth I would have needed my foot amputated by then. This was all too much for me to take in, if it were not for my husband and daughter I would have been in deep depression. My husband and I had to make the hardest decision of our lives. We opted to medically terminate my pregnancy, there was just to much to risk. It was one of the worst decisions I ever had to make and I second guess my choice every day!! I had a bone biopsy and bone scan. It was indeed a giant cell tumor. My surgery was scheduled for about 2 weeks after. The day of my surgery I was a disaster. I hate going under and the thought of this surgery was gruesome. I awoke in recovery and was totally out of it. I had a huge piece of bone taken out of my hip and put in my foot where the Dr removed the tumor along with much of the metatarsal. I have a metal plate and 8 screws in my foot. My surgery was done August 10 2007, today is January 30 2008 and I am still not healed. I was in a hard cast for 8 weeks and then put in a walking boot, all the time putting no pressure on my foot, I am using crutches. November 2008 I go back to surgeon and have xray to find out that my bone graft is not taking. He gave me a bone stimulator which I use every night for 40 minutes. I went back to him in December and had an Xray and once again it shows that I am not healing. He is giving me 6 more weeks to heal I will then have a Ct Scan and if I am not healed by then I will need this dreaded surgery again!! I have been missing out on so many things in my life. I desperately want to finish nursing school, I want to be there to take my daughter to school, I miss doing things for myself! I hate being so damn dependant. So that is my story. From what I know Giant Cell Tumors are very rare and even more so in the first metatarsal. They have a very high rate of recurrence especially if the tumor was as big as mine. The tumor can metastasize to the lungs (so of course every cough I get I think I have a lung tumor) I will need a chest and foot xray every 3 months for the next 2 years and then every 6 months for years 2-5 and then every year for life. I was told by my surgeon not to get pregnant within 2 years of having surgery. Which totally frustrates me because when I ask why I do not get a straight answer. I know that they say pregnancy hormones make the tumor grow rapidly. I will do anything to not have this tumor ever come back but I also want to have a baby, I guess for now I will enjoy the babies all around me. This whole process has been so much worse then I have ever expected. I am very thankful that it was a benign tumor rather then malignant but it is still a lot for me to handle at this point in my life. So please keep me and my family in your prayers my next appt is in 2 weeks!! Thanks