Today was a red letter day. Concerns that Paul and I about the looks of the skin graft and skin surrounding it was erased when the doctor said everything was looking fine. We were concerned about the open skin, but he said that would heal in time, but not to worry. I can start walking.
When I asked him about when would be a good time to go back to work, he asked what I did. When I told him secretary/receptionist, he surprised me by saying "tomorrow". When I told him that going back to work meant driving again, he again surprised me by saying, "What's stopping you?" My jaw dropped open. So next week, I'm going back to work on Tuesday and Thursday which are the days that Michael has school and sometimes parks at the church and then goes to the hi-speed line to catch the train to Rutgers.
Next Friday I'm having a mass said for my late nephew on his birthday at St. Rose. I will drive myself the three blocks to the chapel to test my ability.
On Friday, April 23 my friend Karen treated me to lunch at Brio to celebrate the good news on Wednesday. I actually put a shoe on my right foot and was able to walk with crutches to get in the car and the restaurant. There wasn't the pain in my foot that I used to have caused by the scar tissue on the bottom. I just felt the stitches there. The day was sunny and a little breezy, but I made significant strides in my recovery.
Pray that my days back at work will be sunny and bright like the friends that I have been blessed to have helped me through this transition.
Fondly,
Betsy
Saturday, April 24, 2010
Friday, April 16, 2010
April 16, 2010
Good day everyone. I had my follow-up visit to the surgeon for my skin graft surgery last Tuesday. He was happy to see that the skin graft took and there was small open area which he felt would heal quickly. I am once again able to shower after taking the bandages off. I don't have to keep it elevated as much, but I notice if I have it down too long, it does bother me. Since we can change the dressings ourselves, the nurse is no longer needed.
After showering last night, Paul and I noticed that the open wound seemed to be a little bigger; maybe the graft pulled away slightly. I don't know if I did something, but I have been careful to not put weight on the foot even though I have to crutch it to the bathroom from the hallway door.
I actually made dinner this week from the wheelchair much to Paul's happiness. He hates deciding what to have for dinner everynight. What woman enjoys that job!!!!!!!!!!!!!! I've been watching a lot of the Food Network shows for simple ideas of enhancing our boring dinners, but I seem to forget them or don't have the ingredients on hand. Eventually I'll do the food shopping again.
One good thing that has come from all of this, for the first time in years I have long nails. No fake ones this time, but I find it harder to type.
Thanks again to Donna from Presbyterian Church for our lunch together on Wednesday. The plant is beautiful and I really appreciate the company.
Peace and love,
Betsy
After showering last night, Paul and I noticed that the open wound seemed to be a little bigger; maybe the graft pulled away slightly. I don't know if I did something, but I have been careful to not put weight on the foot even though I have to crutch it to the bathroom from the hallway door.
I actually made dinner this week from the wheelchair much to Paul's happiness. He hates deciding what to have for dinner everynight. What woman enjoys that job!!!!!!!!!!!!!! I've been watching a lot of the Food Network shows for simple ideas of enhancing our boring dinners, but I seem to forget them or don't have the ingredients on hand. Eventually I'll do the food shopping again.
One good thing that has come from all of this, for the first time in years I have long nails. No fake ones this time, but I find it harder to type.
Thanks again to Donna from Presbyterian Church for our lunch together on Wednesday. The plant is beautiful and I really appreciate the company.
Peace and love,
Betsy
Friday, April 9, 2010
April 9, 2010
Dear Friends,
I had the skin graft surgery on Tuesday, April 6th. What supposed to be an early morning procedure was shifted to a 2:00 pm surgery. Upon arriving at Penn Presbyterian Hospital at 12:00 noon, we were informed that Dr. Levin was running behind. So they showed me where to get my hospital gown and sit in the patient waiting area till they could take me up. They didn't take me up till at least 3:45 to the pre-operating room to see the anestheologist. When Dr. Levin came out to check on me, no one had put an IV on me. It turns out I went to sleep and not just the leg. Paul said the doctor came to talk with him at 5:00 pm. I awoke about 5:40 and they put me in post-op till 6:10. (There were clocks all around.) We didn't leave recovery until 7:45. So you can see that it was a long day for an 1/2 hour procedure.
I have another half-cast on my foot and must keep it elevated for a few days. Just when I was getting used to my independence on the crutches, I'm now back in the wheelchair. My next follow-up appointment with Dr. Levin is Tuesday at 3:30 if I'm lucky to get home by 7:00. The doctor did tell Paul that I would be "good as new" in two weeks. We'll see about that!!!!!
I had the skin graft surgery on Tuesday, April 6th. What supposed to be an early morning procedure was shifted to a 2:00 pm surgery. Upon arriving at Penn Presbyterian Hospital at 12:00 noon, we were informed that Dr. Levin was running behind. So they showed me where to get my hospital gown and sit in the patient waiting area till they could take me up. They didn't take me up till at least 3:45 to the pre-operating room to see the anestheologist. When Dr. Levin came out to check on me, no one had put an IV on me. It turns out I went to sleep and not just the leg. Paul said the doctor came to talk with him at 5:00 pm. I awoke about 5:40 and they put me in post-op till 6:10. (There were clocks all around.) We didn't leave recovery until 7:45. So you can see that it was a long day for an 1/2 hour procedure.
I have another half-cast on my foot and must keep it elevated for a few days. Just when I was getting used to my independence on the crutches, I'm now back in the wheelchair. My next follow-up appointment with Dr. Levin is Tuesday at 3:30 if I'm lucky to get home by 7:00. The doctor did tell Paul that I would be "good as new" in two weeks. We'll see about that!!!!!
Wednesday, March 31, 2010
March 31, 2010
I had my weekly appointment with the surgeon today. Paul and I had felt that the open wound wasn't healing that fast and voiced our concerns to the surgeon. He said that since we see it every day, we wouldn't notice the change as much, but he had noticed it. Since the healing of the open wound was slow, Dr. Levin decided for an outpatient procedure of another skin graft from my leg to cover the open wound. That way I won't have to have a nurse come to the house and change the dressing every day. So on Tuesday, April 6, we'll be going to the Penn Presbyterian Hospital down the street from HUP for this 1/2 hour surgery. They will numb my leg for the procedure; I won't be asleep but maybe lightheaded. The rest of the stitches will be removed at the same time.
He also told me that I can start putting some weight on the foot and try walking lightly on the foot to bend the foot at the ankle. So today I tried using crutches to get up the stairs to the house upon return and slowly succeeded. It felt good to be able to "dangle" my foot somewhat, but I still elevate it when I sit down.
The sun was shining brightly and the air was warm. It was a good day for me.
Betsy
He also told me that I can start putting some weight on the foot and try walking lightly on the foot to bend the foot at the ankle. So today I tried using crutches to get up the stairs to the house upon return and slowly succeeded. It felt good to be able to "dangle" my foot somewhat, but I still elevate it when I sit down.
The sun was shining brightly and the air was warm. It was a good day for me.
Betsy
Saturday, March 27, 2010
March 28, 2010
My sincerest apologies for not updating this blog.
My surgery actually happened on February 25 much to my surprise. After calling the surgery scheduler for days and not getting a date for the surgery after my family doctor gave the go-ahead for it, I called the surgeon myself. His nurse or secretary said she would schedule me for 3/4 for surgery but I should come over the next day (Feb. 24) to re-sign the consent form. So Paul and I head over in the afternoon to do just that. After seeing the surgeon, I said "See you next week." and he said, "We moved up your surgery to tomorrow. Didn't anyone inform you of that?" Speechless, I said, "no" and headed back to the waiting room. Much to Paul's surprise, he took it well, but thoughts of calling his boss and cancelling overtime was upsetting to him.
The next day we were in the hospital around 7:00 a.m. and was probably in surgery about 8:30. Upon my waking up, (6:30 pm)there was a cardiologist asking me questions about my heart, did I take drugs, any heart history in the family. Little did I know that during the operation with whatever anesthesia they gave me for the 5 hour operation, it produced an irregular heart beat causing me to go on heart meds and oxygen to bring the heart back to its regular heart beat. (My nurse says it may have been the same stuff they gave to Michael Jackson, but I was able to come through it. Thank goodness.)
The only real pain I had after the operation was in the left arm where they opened it up from the wrist to the elbow to take out the veins, arteries & whatever else they took out. Somehow the button that I pushed for pain medication didn't hit that area. I had a cast on that arm as well as the right leg which had to be elevated on 2 pillows for the duration of the hospital stay. A doppler was stapled to my leg to listen to the blood flow through the veins to make sure everything was hunky dory. Unfortunately, the resident for Dr. Levin (Dr. Baldwin) cut the wires to the doppler when he was unveiling the incision. Then they had to use a hand doppler which they checked every hour.
After 5 days in the bed, I was allowed to get out of bed. Its very cumbersome to do things with only one working arm and one working leg, but it was good to get off the bed. On the days when they wanted to change the sheets after they had given me a bath, they had this pulley system above my head. They would lay you on this canvas blanket with straps to attach to the pulley and then lift you up. I saw a show once where they lifted horses or cows to transport them to ships. That's what I felt like.
Wednesday, March 3rd was my going-home day. After being seen by occupational therapists and physical therapists, the Drs. Levin and Baldwin along with his interns came and checked out their work. All was well and a new cast was put on. Dr. Levin said to see him in a week. Since I couldn't lift my body up stairs with one arm and one leg, I had to have a medical transport bring me home instead of Paul. They showed up 1-1/2 hours late. I never returned home till 9:00 pm, but was just very happy to be home.
When I was supposed to see him on the following Wednesday, it turns out he was going to be out of town so they set up an appt. for me on the following Monday, 3/15. I don't know if it was the length the cast was kept on or moving my leg in the cast, but when it was removed there was an open wound that caused blood dripping to the floor. Immediately Dr. Levin started to put gauze to the wound to stop the blood flow so he could have a better look. Afterwards he applied something like silverdine (?) and then neosporin. He wrapped gauze around it and bandaged it up. We had to come back on Wednesday, 3/17 to make sure it was healing. Since this was an open wound, he requested daily nurse care to bandage my foot. Later, they removed stitches from my arm. There is still a circle near my wrist where the skin graft went from my leg to get the veins, etc. which is healing nicely. There is still some numbness in my thumb though which they assured me would come back eventually.
Now I see the surgeon every Wednesday to check it out. My nurse, Rebecca (very lively and talky) has taught Paul to change the bandage. He and I differ on application sometimes, but in this case, I try not to argue with him as he's doing so much helping me know. He wheels me in the wheelchair to the bathroom to take a shower and bags up my left arm and leg. I can't stand but am thankful for a bath chair to shower. He's the one who helps me up the back stairs on my butt and into the kitchen after the doctor visits at University of Pennsylvania. Those valets, as we both have observed, are so helpful putting my leg into the car, helping Paul with the wheelchair and opening the doors for us. They trained them well.
Some ladies from Presbyterian Church have started sending meals over. Friends have been bringing me lunch, calling and bringing sunshine to my recovery. I can't say when I'll be walking again or going back to work as I still haven't been allowed to put weight on my foot with the open wound, but I pray that this operation will be beneficial to my walking without pain. I had some very sweet nurses - Alyson was my favorite; friendly nurse assistants - especially Nadine from Dominica - who both handled my anxiety attacks and help me to get home. Thanks also to Carol, the discharge nurse who got me the medical transport, prescriptons and shots for me to take home, and making the whole discharge go so well.
I'm sorry this is so long, but I guess I had a month to tell you about. Paul had set up an old laptop that belonged to Lauren right next to my chair so I could read my mail as I had to have my leg elevated at all times and couldn't get into the den here to get to my blog.
My next appointment is Wednesday, 3/31. Dr. Baldwin did remove some stitches on the leg, but many are still there so we don't lose the flap. Hopefully, this week there will be more removed.
Thanks for all your cards, calls and lunches. It is truly wonderful what my friends do to get me through this again.
My best to you all.
Betsy
My surgery actually happened on February 25 much to my surprise. After calling the surgery scheduler for days and not getting a date for the surgery after my family doctor gave the go-ahead for it, I called the surgeon myself. His nurse or secretary said she would schedule me for 3/4 for surgery but I should come over the next day (Feb. 24) to re-sign the consent form. So Paul and I head over in the afternoon to do just that. After seeing the surgeon, I said "See you next week." and he said, "We moved up your surgery to tomorrow. Didn't anyone inform you of that?" Speechless, I said, "no" and headed back to the waiting room. Much to Paul's surprise, he took it well, but thoughts of calling his boss and cancelling overtime was upsetting to him.
The next day we were in the hospital around 7:00 a.m. and was probably in surgery about 8:30. Upon my waking up, (6:30 pm)there was a cardiologist asking me questions about my heart, did I take drugs, any heart history in the family. Little did I know that during the operation with whatever anesthesia they gave me for the 5 hour operation, it produced an irregular heart beat causing me to go on heart meds and oxygen to bring the heart back to its regular heart beat. (My nurse says it may have been the same stuff they gave to Michael Jackson, but I was able to come through it. Thank goodness.)
The only real pain I had after the operation was in the left arm where they opened it up from the wrist to the elbow to take out the veins, arteries & whatever else they took out. Somehow the button that I pushed for pain medication didn't hit that area. I had a cast on that arm as well as the right leg which had to be elevated on 2 pillows for the duration of the hospital stay. A doppler was stapled to my leg to listen to the blood flow through the veins to make sure everything was hunky dory. Unfortunately, the resident for Dr. Levin (Dr. Baldwin) cut the wires to the doppler when he was unveiling the incision. Then they had to use a hand doppler which they checked every hour.
After 5 days in the bed, I was allowed to get out of bed. Its very cumbersome to do things with only one working arm and one working leg, but it was good to get off the bed. On the days when they wanted to change the sheets after they had given me a bath, they had this pulley system above my head. They would lay you on this canvas blanket with straps to attach to the pulley and then lift you up. I saw a show once where they lifted horses or cows to transport them to ships. That's what I felt like.
Wednesday, March 3rd was my going-home day. After being seen by occupational therapists and physical therapists, the Drs. Levin and Baldwin along with his interns came and checked out their work. All was well and a new cast was put on. Dr. Levin said to see him in a week. Since I couldn't lift my body up stairs with one arm and one leg, I had to have a medical transport bring me home instead of Paul. They showed up 1-1/2 hours late. I never returned home till 9:00 pm, but was just very happy to be home.
When I was supposed to see him on the following Wednesday, it turns out he was going to be out of town so they set up an appt. for me on the following Monday, 3/15. I don't know if it was the length the cast was kept on or moving my leg in the cast, but when it was removed there was an open wound that caused blood dripping to the floor. Immediately Dr. Levin started to put gauze to the wound to stop the blood flow so he could have a better look. Afterwards he applied something like silverdine (?) and then neosporin. He wrapped gauze around it and bandaged it up. We had to come back on Wednesday, 3/17 to make sure it was healing. Since this was an open wound, he requested daily nurse care to bandage my foot. Later, they removed stitches from my arm. There is still a circle near my wrist where the skin graft went from my leg to get the veins, etc. which is healing nicely. There is still some numbness in my thumb though which they assured me would come back eventually.
Now I see the surgeon every Wednesday to check it out. My nurse, Rebecca (very lively and talky) has taught Paul to change the bandage. He and I differ on application sometimes, but in this case, I try not to argue with him as he's doing so much helping me know. He wheels me in the wheelchair to the bathroom to take a shower and bags up my left arm and leg. I can't stand but am thankful for a bath chair to shower. He's the one who helps me up the back stairs on my butt and into the kitchen after the doctor visits at University of Pennsylvania. Those valets, as we both have observed, are so helpful putting my leg into the car, helping Paul with the wheelchair and opening the doors for us. They trained them well.
Some ladies from Presbyterian Church have started sending meals over. Friends have been bringing me lunch, calling and bringing sunshine to my recovery. I can't say when I'll be walking again or going back to work as I still haven't been allowed to put weight on my foot with the open wound, but I pray that this operation will be beneficial to my walking without pain. I had some very sweet nurses - Alyson was my favorite; friendly nurse assistants - especially Nadine from Dominica - who both handled my anxiety attacks and help me to get home. Thanks also to Carol, the discharge nurse who got me the medical transport, prescriptons and shots for me to take home, and making the whole discharge go so well.
I'm sorry this is so long, but I guess I had a month to tell you about. Paul had set up an old laptop that belonged to Lauren right next to my chair so I could read my mail as I had to have my leg elevated at all times and couldn't get into the den here to get to my blog.
My next appointment is Wednesday, 3/31. Dr. Baldwin did remove some stitches on the leg, but many are still there so we don't lose the flap. Hopefully, this week there will be more removed.
Thanks for all your cards, calls and lunches. It is truly wonderful what my friends do to get me through this again.
My best to you all.
Betsy
Thursday, January 21, 2010
January 21, 2010
Today was to be the day for my surgery on my foot. Originally it was supposed to be January 14, 2010 and then it was changed to the 21st for some unknown reason. I had my pre-op interview over at the Univ. of PA on December 30th. At that time I had an EKG, blood work and a chest X-ray, things that I thought were necessary to get ready for the operation. Last week Dr. Levin's office called to say they hadn't received clearance from my primary care physician. I was stunned to learn that I had to actually see my family doctor to get the approval. Whether they told me and I forgot or they used the word "we" which I thought meant them and they thought it meant me, would have to get clearance from the primary physician.
I immediately called for an appointment and got one for Jan. 18. The nurse said my blood pressure was perfect and I hadn't gained any weight. The doctor (Dr. Westinberg) was substituting for the other doctors who were off for Martin Luther King Day. She asked if I ever had shortness of breath. Sure I do when I'm climbing the hi-speed line stairs. Who wouldn't!
By Wednesday afternoon after I cleaned my desk, finished up miscellaneous jobs before I left work, I received a call from the surgeon's office saying they still didn't get the clearance.
Apparently this Dr. Westinberg noticed something on my EKG. She was to have called me on Monday to let me know that I now had to see a cardiologist before she would clear me for the operation. To top it all off, the office worker said I might have to wait maybe two months before I can get the operation. At that, I hung up the phone. So upset was I at hearing this news, I just screamed. Surprised for sure were the people who saw me at work this morning. I did get an appointment for Monday morning with a cardiologist here in town that my brother goes to. Hopefully after that appointment I can get an idea of when the surgery will be hoping of course that Dr. Levin doesn't have a full schedule for the next couple of months.
Maybe this was meant to be to avoid worse things down the road. God in his greatness is protecting me. And I have to be thankful for that. Bill Getman, in our weekly staff meeting, gave a reading about things, one of them being fear and overcoming it. It gave me a calmness that day to stop worrying about things that could go wrong and just pray to get the operation over with. I calmed the fear and I was protected with the delay.
Will let you know what happens after I see the cardiologist. Thanks for taking the time to read my rantings. It's so nice to have friends who care.
Betsy
I immediately called for an appointment and got one for Jan. 18. The nurse said my blood pressure was perfect and I hadn't gained any weight. The doctor (Dr. Westinberg) was substituting for the other doctors who were off for Martin Luther King Day. She asked if I ever had shortness of breath. Sure I do when I'm climbing the hi-speed line stairs. Who wouldn't!
By Wednesday afternoon after I cleaned my desk, finished up miscellaneous jobs before I left work, I received a call from the surgeon's office saying they still didn't get the clearance.
Apparently this Dr. Westinberg noticed something on my EKG. She was to have called me on Monday to let me know that I now had to see a cardiologist before she would clear me for the operation. To top it all off, the office worker said I might have to wait maybe two months before I can get the operation. At that, I hung up the phone. So upset was I at hearing this news, I just screamed. Surprised for sure were the people who saw me at work this morning. I did get an appointment for Monday morning with a cardiologist here in town that my brother goes to. Hopefully after that appointment I can get an idea of when the surgery will be hoping of course that Dr. Levin doesn't have a full schedule for the next couple of months.
Maybe this was meant to be to avoid worse things down the road. God in his greatness is protecting me. And I have to be thankful for that. Bill Getman, in our weekly staff meeting, gave a reading about things, one of them being fear and overcoming it. It gave me a calmness that day to stop worrying about things that could go wrong and just pray to get the operation over with. I calmed the fear and I was protected with the delay.
Will let you know what happens after I see the cardiologist. Thanks for taking the time to read my rantings. It's so nice to have friends who care.
Betsy
Sunday, November 8, 2009
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
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
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