I was awakened by the telephone, it was Dr. Weber!  Where are you, she asked.  I said I was sleeping.  I was told to be there at NOON.  She said NO, we are waiting for you.  This was about 7:00 a.m.  I did not have time TO THINK.  I told her I could be there by 9.  After all, I wanted to get a shower before heading into the hospital.  Norma, Oneida & I headed into the city.  Mom, Alice & Sue drove down from PA & met us at the hospital.  Unfortunately, I didn’t get to see them before I was taken in for surgery.  The morning flew as they were literally waiting for me to get there.

During surgery the tumor was removed.  It was 11 cm in length & wrapped around the anterior 50% of the femur.  In addition, 40% of the vastus medialis & all of the vastus intermedius were removed.  The femur was scraped in an effort to leave no cells behind.  I remember waking up in recovery & not being able to feel a thing.  By the time I got to my room, I was sitting up in bed visiting with family & friends.  They were so excited cause the tumor was out & Dr. Weber was able to get “clean margins”.  I remember this vividly as I was Happy but also a little down because I could not control my leg in any way.

I would be walking on it the next day with the aid of crutches, which literally made me cry.  I had never had an incision & mine was 12 inches long & held together by 20 stitches internally & 30 stitches externally.  INCISION PAIN was brutal.  The next day I was doing the stairs.  There were Dr’s & Nurses standing in the hall watching & clapping, cheering me on.  I cried that day too.  By Thursday, they were ready to send me home.  But I waited until Friday because I had made arrangements for a friend to meet me at my steps to be sure I could get up all 18 of them!  It was rough.

The weeks prior to surgery were hard.  I did work some to keep my mind occupied.  I found it helped to keep my thinking on normal, every day things and not the UNKNOWN.

One task that needed to be done, was coming off the pain patch I had been using.  Dr. Weber didn’t want me on that strong narcotic for surgery.  I was given lower dose pain patches & pills to help this process.  Thru this, I learned what “withdrawal” is all about.  I experienced some of the affects of drug withdrawal.  It was very challenging.

I decided to go to PA for Easter to be with family.  That too was difficult.  I had been in “isolation” for so long & everyone wanted to see me.  It was hard to handle all the activity because of how bad I still felt.  Plus, I was a bag of NERVES.  I was so scared & returned to MD early just to be in my own surroundings.  I went to see Dr. Alonso & she prescribed a mild dose of xanax to get me thru the last 5 days until surgery.  She was surprised I didn’t need it before now.  I share this because everyone needs HELP at times.

After finishing 2 rounds of chemo & 22 radiation treatments, I had to wait 4 – 6 weeks to have surgery to remove the tumor.  Dr. Frank Frassica, the Orthopedic Oncologist on my team recommended that Dr. Kristy Weber take over my case.  At the time, I was very upset.  I didn’t want a new Dr & having to explain everything I had endured to this point.  But it ended up being a very good thing!

When Dr. Weber contacted me, she knew my case & what I had been through.  I was very impressed!  Her comment was … if my calculation is correct you are eligible for surgery on Tuesday, April 25th, will that work for you?  I couldn’t believe it.  I had battled at different times for appts, etc … so this was a breath of fresh air for me!  Of course, I said YES!

Now I just had to get through 4 more weeks of no sickness, etc … it was difficult coming from an appt driven world to the “waiting” game.  Extremely rough mentally & I was full of fear.

I started my second set of 11 radiation treatments on  Monday, March 13.  It was rough getting there, just because I felt so bad.  After blood work that day, I learned my white blood cells were almost nonexistent & at 410.  Normal range is 4,500 to 11,000.  Another 10 day, round of antibiotics were ordered.  Ugh …

The next week, my blood work revealed my red platelets were way down.  They were talking transfusion, maybe … by this point in time, I just wanted a normal blood count … no antibiotics, no transfusions.  The next week my counts were better & radiation was done on Monday, March 27th, Alice’s Birthday!

I was admitted to Johns Hopkins again on Monday, March 6th, only 6 days after being discharged from having the infection.  It was time for my 2nd round of chemo.  I was in for 4 days this time.  I came out of the hospital very tired & weary, needless to say.

I was scheduled to start radiation on Friday, March 10th but could not make the appt because I was so weak & tired.  Mom & Barb were with me for a long weekend.  Saturday morning Mom made COFFEE like normal & I woke up feeling as though a blanket of coffee was covering my face.  It sent me into a PUKING event & rough morning.  My sense of smell was so heightened, it was awful.  I did not do much, other than lay around & sleep.   I was very weak in this DARK TIME.