November 8, 2009

I didn't realize how long ago I last posted something on the blog, but my friends and relatives told me its time to update.

I finally did walk without the use of a walker, crutches and a cane. The cane was hard to get rid of because of my fear of falling, but eventually found myself forgetting to bring it along. I got my independence back. Michael was anxious to drive his own car instead of driving me everywhere in my car. You get so used to just watching the scenery and not the traffic.

Hair came back slowly and by the end of April I could feel secure in not wearing the wig. It was still short, but it was my own. It didn't come in curly like people said it might. It came back straight, thinner and hardly any grey at all. (good thing) I did lose some of the body and natural curl I used to have, BUT I HAD HAIR.

The wound was still open where they took the tumor out. Summer came and I could finally swim in my own pool. There was still pain in the bottom of my foot and my first two toes were always a little bent. At this juncture, the wound was the size of a small walnut. I used two pieces of gauze over the wound and then wrapping stretch gauze around my foot to secure the first two pieces. This is done everyday as the wound is still draining and and I didn't want it to get infected.

Every three months I still got the required CT scan and MRI. Everything was still clear with no signs of cancer. I went back to my full work schedule of 32 hours a week, allowing time off for doctor's appointments. The summer of 2008 we rented a condo in Ocean City, MD for a week right on the beach in August. I'm not really a beach person and don't like the sand, but the rest of the family does. Never went in the ocean, but enjoyed the sun and waves. At night we sat on the balcony with a glass of wine (if Lisa & Lauren were there) and had our family game night. That summer we had Cranium which was hysterical.

Life went on as usual. Speed forward to the present. All visits to the oncologist were all very positive with no signs of cancer. In October I was given the good news that now my visits could be every six months instead of three.

My May visit with my orthopedic surgeon, Dr. Christian Ogilvie who was young and so very nice, would be my last with him as he moved to Minnesota so his wife could be closer to her family. My care would now be taken over with the head of the practice, Dr. Richard Lackman, who's in the "top doc" category for his field in the Delaware Valley. October was my first visit with Dr. Lackman. He surveyed the wound, which still hadn't fully closed yet, and suggested that after 2-1/2 years that if it wasn't closed, that it'll never close. There was a lot of scar tissue on the bottom of my foot that probably caused the hardness I felt when I walked. Also a ring of skin had formed a callous around the wound which the surgeon had to scrape every visit. In between visits, I would go to a podiatrist to scrape the callous. Dr. Lackman referred me to his friend, Dr. Scott Levin, a wound specialist at the University of Pennsylvania.

My first visit with him was Wednesday, November 4th. After trying to find the place, it took Paul and I three times around the hospital and school to figure out where to park. Finally I told Paul to just drop me off. We were always in the wrong lane to where the parking entrance was and a transit strike increased the amount of cars around the hospital. After what seemed like eons, we met with Dr. Levin. Very pleasant and knows his stuff. He pushed on the scar tissue and checked out the hardened skin. His conclusion was that surgery would be needed to close up the wound. I thought "Oh, good. He's going to just stitch it closed. It's only the size of a q-tip." Wrong. The doctor will remove veins from my arm and insert them into my foot to increase healing. I might need a skin graft on my arm where they take out the veins. I think he said I may have a long scar on my arm. I have to remain in the hospital 5 or 6 days to make sure it works and then be off my foot for 3-4 weeks. Dr. Levin has done this surgery over 1500 times (Paul thinks he was exaggerating) and is 98% effective. I decided to put off the surgery until after Christmas since this is a busy time at the church. Tentatively the surgery is scheduled for January 14th. So I'll be back to the crutches again. Maybe eventually I'll be able to wear regular shoes. There is still swelling (edema) on the right ankle which may never go away. I did wear real shoes for my 40th high school reunion, but the bent two toes make walking uncomfortable.

I was beginning to accept the pain in the bottom of my foot to be the rest of my life. A couple of doctors over the period since the removal have indicated to me that the radiation on the foot caused the wound to not heal, but now I can hope for a pain-free walking experience. I did start bicycling at the gym to get back my stamina, but then it was discovered I had an underactive thyroid only to slow me down again until the medication kicked in.

So now we wait. My oncologist did say that since there has been no reoccurance of the Ewing sarcoma within 2 years since I stopped chemo, that I can be considered cured of this type of cancer. That doesn't say that I can't get cancer again, just not this type. That wonderful date is November 16th and I will celebrate. It's been a long two (almost 3 years) since this journey began and it's still not over yet. God willing that once this surgery is done, I can walk comfortably again.

With your love and prayers I have made it this far. My friends have coped with my slow speed and times when I can't think of certain words which I still feel are the result of the chemo. Thank you one and all. Have a very Merry Christmas. And may 2010 be happy and healthy for all of you.

Love,
Betsy