Lori’s Story

In May of 2000, everything I thought I knew about my life changed.  I had just come home from a trip to New York to visit my grandparents.  It was a very normal day, and while showering I noticed a pain in my right kidney area.  Great, I thought, I’ve got a kidney infection.  I went to my GYN as he was my closest physician and the easiest place to get a urine test done.  There was no infection, as it turned out, but I did have blood in my urine for no reason.  He admitted me to run some tests.

He scanned, x-rayed, scoped…you name it, he did it.  On the very last day, he opted to run a bone scan to see if he could pinpoint the reason for my now phantom (as in gone) pain.  During the bone scan, my tumor was found.  Of course the x-ray tech couldn’t tell me that; she simply told me to get it checked as it wasn’t normal.  As a side note…no cause was ever found for the original kidney pain.

Off to the ortho (Dr. Robert Fain) I go…after all, I thought I had a knee problem.  He says, “You have to go to M.D. Anderson.”  I’m in utter disbelief!  For what?  I thought this was just arthritis.

Dr. Fain paves the way for me to get in to M.D. Anderson, where my case is picked up by the Chief of the Sarcoma Clinic, Dr. Robert Benjamin. I’ve come to truly love this man.  More tests.  Everyone who is on the web page knows about the tests.  I’m going to glow & poop in technicolor for the rest of my life!  The bone biopsy is not specific.  They can only tell that it’s a spindle cell sarcoma, not the specific “make & model”.

Treatment: Chemo is begun on 6/30/2000, and my hair is gone three weeks later.  Many rounds of chemo ensue until, in September 20o0, I am scheduled for surgery.

Dr. Kristi Weber is a great doctor, an excellent surgeon & the best cheerleader there is!  She performs an allograph on my right femur.  So now I have a little over 5 inches of someone else’s femur bone in my body.  I’m now to be completely non-weight bearing until the two bone grafts heal.  This ends up being 13 months…bear in mind that I’m an overweight 45 year old woman by this point.

In November 2000, during my monthly appt. Dr. Benjamin comes into my exam room and smiles at me.  For the first time since I’ve been his patient, he is smiling.  I start to cry.  Maybe I’m going to live through this after all. He tells me my tumor is MFH (I’ve have lots of words that fit those initials – can’t put any of them here tho!).  I’m told this type of cancer in the bone in someone my age is very rare.  Woo-hoo, lucky me!  He tells me there will be more chemo, inpatient & outpatient.  And that 2001 will probably suck, but 2002 will be great!  2002!!! Up till this point, no thoughts had strayed that far ahead.

The new, tougher chemo regimen starts and he’s right, it still sucks…until, in April 2001, my bone marrow dictates that there is to be no more chemo.  The other thing that has been dictated is that I have to have another surgery.  The original one has not healed.  This time, my fibula is transplanted to my femur.  The original metal brace is removed & a longer one is put in…along with 13 screws…on an Xray, I look bionic. But I still have my leg.  Since there is no chemo to interfere, the leg finally heals. My gift for my 45th birthday is that I’m allowed to walk on both legs!

Life Now: My other, ongoing gift is that I am here.  I am writing my story.  This month – April 2009 – is my 8th anniversary off chemo.  I’ve had no recurrences. I have come to believe in Guardian Angels (remember that phantom pain?) and the people at M.D. Anderson.  Dr. Weber has moved on to Johns Hopkins and I truly miss seeing her.  There’s just something about the people who save your life that you never get over.

Malignant Fibrous Histiocytoma at the distal femur
Date of Diagnosis: June 2000
Age at diagnosis: 44
Location: Houston, Texas – USA
Surgeon: Kristi Weber
Oncologist: Robert Benjamin