Thursday, December 28, 2006

Merry Christmas- a little belated

I have been trying to come up with some kind of a witty post about Christmas. However, the truth of the matter is that I just feel wittied out. My parents and I travelled down to San Diego for Christmas at my brothers house. It was a wonderful 3 days of family celebration. One image that is stuck in my head is my niece (6) and nephew (almost 4) trying to enjoy their snow bogey boards, a gift from Santa, by riding them down the stair case together. What really sealed that moment was them wearing helmets, not fastened, after we all heard Addie question if the above activity was safe. Now I know that they just wanted to play wtih their new toys, and I fully know that Kevin and I would have done the exact same thing 30 something years ago but without the helmets. It was really too cute to be missed.

However, the moment worthy of this blog came on arrival to my brothers house. As we were unfolding from my mom's car after the long drive, my little nephew was standing at the door waiting for me to get out. Upon seeing me with two shoes and no crutches (a great improvement from Thanksgiving), he threw himself around me and declared, "Aunt Lisa your'e all better." It was all I could do to hold it together, because while I seem all better on the outside and certainly to the eyes of a 3 year old I'm better.- I can walk again, I am wearing normal shoes ( albeit less cute then my usual standard), but yet I feel so far from all better. I have tried to take this whole thing in stride and not let it eat at me. Everyone keeps telling me how impressed they are at how I have handled this. However, there are moments that it hits me full force. -- My life will never be the same again. From this moment on- this little episode will always be a part of me and my history. Sometimes, I can hardly take the thought of it. So, while I chose to embrace my nephew's enthusiasm that yes currently, physically, I am better than I was a month ago, inside my heart cried out to really be "all better".

The good thing about having little kids around, especially at Christmas is that their enthusiasm and joy is contagious. So, a warm happy holidays to all.

Friday, December 22, 2006

The Poop and the Pee

AKA: Translation of medical gobeldigook (SP)

When I was a neonatology fellow, I tried to explain to one of my college roommates who does something to do with finance that I don't understand, what I was doing. I started telling her about pulmonary hypertension and meconium aspiration and got a resounding- what? from her. So, I broke it down as follows: Fetuses have to be surrounded in their own pee and "breathe" it for their lungs to develop. If the fetus doesn't make urine their lungs don't grow- weird, yes- a little disgusting maybe, but hey science is cool. However, the fetuses aren't supposed to breathe their own poop (kindly called meconium so it doesn't sound so dirty), when they do they get sick. That is why you have to be careful when a baby passes the poop before they are born. When LD, the same friend had her baby 2 years ago she had pooped and the OB tried to explain to her why the NICU people would be at her delivery, and she laughed and said "oh, I know all about the poop and the pee" and launched into the above explanation.

So, what does any of this have to do with my foot, excellent question. LD tried to look up the kind of cancer that I have- myxoid liposarcoma and she got the following definition- "a liposarcoma of the myxoid variety". I mean really people anyone could figure that out. So she asked for a poop and the pee definition. I'll do my best.

Liposarcoma is a soft tissue cancer that arises from fatty tissue often the fat right under the skin. Sarcomas are cancer that arise from the connective tissue of the body- things like bone, fat, cartilage, tendons, muscles really anything htat holds your body together. Myxoid means mucus- like. Apparently that all means that the tumor has a mucusy characteristic. I don't fully understand yet what all that means. One of the important ways to tell how advanced the cancer is, is to count the round cells ( I swear that is what they call them) <5% is better. I have < 5%, so a low grade cancer.

I am not sure if I helped, my tumor biology isn't great. What I know is that there are bad cells that must be cut out and then killed with an xray beam. I do find it curious that I have ankle cancer arising from fat, when my ankles are one of the decidedly few skinny parts of my body. Even as I have gained weight, my ankles have always been thin. My best friend used to make fun of me for my skinny ankles. Well, I guess there was enough fat there to go crazy. I mean really where is the justice.

Thursday, December 21, 2006

Option 4

When I met with the ortho oncologist here in LA he described 3 options for taking care of this nasty business. The 3 options were all bad- Here's a summary:
1- do nothing, see if it comes back and accept that if it comes back it will have a high likelihood of metastisizing and with the old dx it would be untreatable except to resect (My boss said he never wanted to hear about that option again and neither do I)
2- amputate my foot, thereby removing the whole thing,
3- reexcision of the ankle which would leave me with my foot, but I wouldn't be able to feel it and I wouldn't have complete control over it.

As you can see all 3 options were bad and that is why I celebrated getting a new diagnosis. Still I desparately wanted an option 4. Something else, anything else. Becuase none of the above options were working for me. So, I spent a week arranging to send my stuff to Sloane Kettering. I talked to my friend who works there almost every day, my pathology went to New York, and I prayed. When I found out that they had rediagnosed my cancer as the liposarcoma, I thought maybe my prayers were answered and I hoped that it meant we would find option 4.

Off to New York I went with my dad, hoping option 4 existed. We spent one day having fun exploring the big apple at Christmas time which is special (pictures to follow, if I can figure out how) and then we went to Sloane. I had a repeat MRI, which my friend said showed that I had walked too much the day before. Did you know that they could tell that on an MRI? I mean really what has medical technology come to. However, the MRI did not show any visible residual tumor.

So, option 4 does exist, and here it is!- I still need to have repeat surgery, but it doesn't have to be as extensive (ie. they can spare the nerves and vessels) and then 2 months of radiation afterwards. Hello option 4, it may still not be great, but I'll take it. I have always believed in preparing for the worst so that when it is better you think that you have hit the jackpot. Option 4= jackpot for me right about now.

Monday, December 18, 2006

My birthday party

Word of the weekend- overwhelmed

The day after I found out what tey took out of my foot- after the numb, shocked and scared feeling begin to morph into action plans I came up with the idea of having a birthday party. Now that may not seem like a normal reaction to some, but to me it made sense- I didn't want to mope, I didn't want to feel sorry for myself- I wanted to celebrate the good things in my life and be surrounded by my friends while doing it. So, I floated the idea to a couple of dear friends (Kim and Lori) who wanted to help as what they could do for me, and I let them run with it. I made out a guest list. Kim called everyone on it, and then she informed me how many people were coming. We divvied up the food prep work and I set my mind for a party. It was strange throwing a party in my house and not knowing who was coming. I had some idea who was coming, but really I didn't know. I knew it would be a mix of old and new friends and I knew that I would draw strength by being surrounded by them. What I wasn't ready for was seeing my friend Suzanne who lives in Illinois arrive on my doorstep with her 18 month old son. I couldn't believe that she had travelled for 10 hours to be there with me, her coming touches me so deeply I don't know how to describe it and everytime I try I start to cry. She wasn't the only one who went to lengths to be there. I still can't believe it. But essentially the party was what I wanted and more, I was surrounded by friends old and new, people from work, from college, from life and their love and friendship is so dear and it gives me strength. So, Kim and Lori thank you from the bottom of my heart for a great party.

Friday, December 15, 2006

Happy Birthday To Me

Happy Birthday to me. Yesterday was my birthday, I celebrated doing more disability forms (not so fun but necessary), my physical therapy and then spending the rest of the day in the following order decorating my house with my mom, taking myself out for a much needed massage and then a wonderful dinner with my parents. I also put a moratorium on discussion of anything that related to cancer or prosthetic feet. As a result of the above measures I had a wonderful relaxing day.
Today I am getting ready for my birthday party that my friends are throwing for me, and I just got a call from my friend at Sloan Kettering who has been coordinating things for me out there. An aside: Not too many people are lucky enough to have a good friend who is an MD PhD specializes in sarcomas at one of the nations best cancer hospitals coordinated their care; however, I do and I fully appreciate it. Anyway, my friend just called and gave me on the best birthday presents- apparently the pathologists at Sloan Kettering have reviewed my pathology and have come up wtih a different diagnosis for me. Yes, I still have cancer, but now I have myxoid liposarcoma instead of extraskeletal myxoid chondrosarcoma. Now you might not think that still having cancer was good news, but this new cancer is 1) radiation sensitive and 2) less aggressive. Therefore, surgery doesn't have to be as aggressive, meaning I'll probably be able to keep my foot. I'll learn more when I meet with the doctors but for now a little of the weight of this whole thing is lifted from my shoulders, and I plan to have fun with my friends tonight and celebrate my left foot rather than cursing it.

Wednesday, December 13, 2006

Hello Blog

My friend Kim of the House of Prince convinced me to start a blog to chronicle the story of my left foot. Otherwise, known as the trials of tribulations of fighting cancer in the ankle. I am not sure that I'll be any good at blogging, but at least I'll be able to keep people updated about what is going on. So, here goes we'll see if this works for me.

The news of the day is this "growth" (aka my cancer) is not in my lungs. The other news is that I could actually stomach a long conversation with the prosthetist. Although, I like my foot and I want to keep my foot, if the only way to not have to worry about this thing coming back is to not have a foot anymore than maybe I can come to grips with that. I said maybe here. Of course, it isn't even that strong of a maybe, but hey I talked to the guy. OF course, I asked the guy questions like-
Will I be able to ski again?- yes, they can fit a prosthesis to my ski boot
Will I be able to wear shorts?- yes, they make prosthesis now that look like your other leg
Will I be able to wear heals again?- yes, but probably not higher than 2.5 inches. Apparently they can make a special prosthesis that has an angled foot and can fit in heels. Who knew
Will I be able to hike?- yes, but not for awhile because I have to be really stable on the new leg again
Do I have to take it off to sleep? -yes- How long will it take to put back on at night?- it'll get to be really fast
How many of these things will I need to do all the above?- probably 3

I will meet with him after I get back from my second opinion at Sloane Kettering to see these things. I think I am making progress even if I don't want any of it. I don't want it.

Every so often someone newly diagnosed with a sarcoma finds my blog and I sometimes get emails commenting on how my story ends before the beginning. For those few of you who might find this and want to read it. One year after learning my diagnosis I wrote about it here.