It’s been a few days since my last update, but we’ve been staying busy with company and Christmas! Mema, Joan and LeeAnne have been in town and we’ve been having a good time with them, despite my pretty much staying locked inside as often as possible.
On Friday Joan came with my mom and me to the NYU Cancer Center to see this place for herself after reading so much about it. She snapped this picture of me in the standard pose that I assume most days, especially when I’m on chemo and exhausted!
We also had a meeting with Dr. Rosen where he discussed our progress so far and the results of the CT Scan I had on Thursday. Unfortunately up until now the results are not as good as he was hoping. My tumor has not reacted much to the first two chemo treatments, but that wasn’t incredible news to me, because I see my leg every day and the size hasn’t really changed! One thing he did say though was that it is his suspicion that we might not be able to save my leg. Due to the size and location of the tumor, even if we do shrink it significantly during this next round of chemo (which is going to be a new mix of drugs), he has a feeling that there could be a high likelihood of recurrence if we try to save the limb.
The problem with this cancer is that if you try to save the limb and leave a single cell behind, there is a high probability that the cancer will come back. If the cancer comes back the survival rates drop rather significantly. Not to say if it ever comes back I wouldn’t survive, but it just puts you back at square one and you have to do everything completely over again. Because my tumor is wrapped around the nerve bundle and arteries, and touching up against the 2 bones in my leg, it might be problematic and very traumatic to go in and remove it. Even if we try, they would have to take a significant amount of those bones and the muscle tissue to try to ensure that we got it all, with no guarantees that we would.
This is not a final prognosis by any means. We still have to have consultations with surgeons after my third round of chemo and we should have a better idea after we speak with a few of them. My take on it is that I’d rather lose my limb than my life, and if there is a chance that it is going to come back and cause major issues down the line, go ahead and remove it and have done with it!
If we do amputate, my doctor said that I might be able to do a knee disarticulation. This type of amputation would actually go right through the knee, below the femur, and above the tibia and fibula. The benefits of this location are that you don’t actually cut any bone or muscle tissue in the procedure, and it leaves your thigh muscle intact, which lets you maintain a lot more power than a normal, above knee amputation, which cuts through the femur and thigh muscle. What I have read says that this location also happens to be one of the least traumatic locations for an amputation, with the quickest recovery times.
Needless to say I have been spending the past few days doing a lot of research and finding out how active I can remain if we do have to take this course of action, and honestly it sounds like you can remain as active as you desire. Here is a video I found on Youtube of a guy trying on a Cheetah Prosthesis (running leg) for the first time.
That is literally the first time he put it on. Pretty amazing! I’m not saying this isn’t going to be without it’s challenges. Obviously it won’t be an easy path. But if this is what it takes to permanently remove the cancer and let me get on with my life, then I’m ready to get going! Honestly, I have been in so much pain with my calf the way it is for the last 2 years, this will probably be a relief. I am just ready to get back to the normal level of activity that I have not been able to do for a long time. If this is what it takes to get me there, then so be it.
I am also fortunate to have some great examples of relatives who have had limb loss and lead perfectly normal lives. My cousin Mary Howard lost her arm in a boating accident and has been an incredible example of how you can rebound from something like this. I think losing an arm would be a much greater challenge than what I am faced with, and the fact that she handles that with such grace is truly a big inspiration to me. I also have another cousin named Rusty who was actually born without arms. He is able to drive, play golf, and is a professional artist, who does amazing pointillism drawings while holding the pen in his toes. They are more realistic looking than the things I am able to draw, and I wouldn’t consider myself half bad in that arena! His accomplishments are incredible, and again, in the face of much greater adversity. You can check out his work here: http://redfernoriginals.com/
Alright! Now that I’ve written a novel about all of this, on to other things! On Saturday we took advantage of having Joan’s car and went out to the Hampton’s for the day. It was so cold we basically just drove around, but it was pretty. I’d love to see it in the spring when we can actually get out and walk around those little town center areas. On the way home we stopped and picked up an artificial tree to decorate the apartment. Thanks to all the ladies we’ve had around, it’s starting to look like we actually celebrate Christmas now!
I came down with a bit of a fever on Saturday night, but THANKFULLY it never got over 100, so we didn’t have to go to the emergency room. If it hits 100.5 then we have been told that is what we have to do, so despite not feeling great, I was pretty happy that we didn’t have to get all bundled up and go out in the cold!
On Sunday morning all the girls went to church, and my dad stayed home with me since I still had my fever. As a little background, apparently he has never seen my chest when the mediport wasn’t accessed before. The mediport is surgically installed under the skin, and then accessed with these needles that have tubes attached. We usually just leave it accessed for a week at a time, but when I am not getting blood drawn every day, we don’t leave the tubes in, so my chest just looks normal.
On Sunday morning I walked out of my room without my shirt on and said hi to my Dad. He looked up from whatever he was doing and I saw this look of sheer panic come over his face as he exclaimed, “Oh my gosh! Your mediport is out!!!” He scared me half to death! I looked down expecting to see some medical thing sticking out of my chest, but everything was totally normal. It was then that we realized he had never seen it when it wasn’t accessed before. Pretty funny, but scary at the time!
We just got the word that my white blood counts are up to 24 (normal range is 7-10) and everything else is looking great, so I won’t have to come back to the 6th floor until after Christmas! We still have to come down here every day for radiation, but that doesn’t take long, so that is good news!