Wednesday, January 5, 2011

How I Got Where I Am

     In September of 09 after the passing of my dad, I  had a bone scan and MRI performed due to terrible back pain that I was having.  Results came back that my breast cancer had returned in my spine.  The hardest thing was having to tell our children that I was now stage IV.  Matt and Dan know that my disease is now incurable and considered chronic disease which we pray that will be controlled for a long time, God willing.  Treatment for my spine mets..... radiation since one is very close to my spinal cord and using another hormonal treatment called Faslodex and Zometa.  My oncologist thought this was the appropriate next line of  treatment since I did so well on the previous hormonal Femara. 
     I was on the Faslodex for 5 months and was feeling great in January and back to exercising on our Nordic Track.  In February I started feeling awful, fevers off and on and terrible pain running down my right leg like electric shocks.  By the end of February I had a regular appointment with my oncologist and told him about the pains shooting down my right leg and also numbness in my right big toe.  He stopped the Faslodex and started me on a new oral chemo called Xeloda.  Two weeks later I was having such terrible pain going down my right leg along with loss of being able to void that Ed took me to the emergency room and they ran another MRI.  The MRI showed that I had  a new tumor on my lower lumbar that was all intertwined in the nerves, it also showed that I had disease progression that was now in my liver.  Boy talk about flunking the Faslodex big time!  Treatment..... radiation to tumor and stay on Xeloda.  I was discharged with a foley cath because I still could not void on my own, and now I was walking with a major limp due to numbness in my right leg.  Over the next weeks the numbness in my right leg increased.
     On May 6th I fell down our stairs due to my right knee giving out which caused my right ankle to turn.  A trip to the emergency room and an x-ray confirmed that I had broken my clavicle in three places.  The orthopedic doctor recommended surgery because it was broken in three places and breaks of this nature have a less then 50% chance of healing on their own.  With everything that was going on with my health, we decided that we would see if it would heal on it's own.  Pain patch worked to elevate any pain that I was having.  Thank goodness we did not get rid of our ugly old recliner that was in our bedroom because it became my bed over the next few weeks. 
     One morning in the middle of May I was unable to stand due to the numbness in my right leg.  Another trip to the ER, admission to the hospital and MRI... ugh.  My oncologist was totally baffled because the MRI showed improvement and he could not understand why the numbness was getting worse.  He then calls in a neurologist and he has a nerve conduction test preformed.  Results of the nerve conduction test.. nerves in my legs are fine and working, but he is still stumped and has no idea what the numbness is being caused by so the next step is going to be rehab and a trip to Dana Farber.
     Rehab was the pits! The day they rolled me into the physical therapy room and I saw the line up of patients in their wheelchairs all of them half asleep (most likely due to pain meds) and no one under the age of 75!!!!  I was thinking to my self how can I get out of here and make a quick get away?  I felt like I was in a geriatric ward, and let me tell you the food only confirmed those feelings.  Ugh... I felt like I just went from the Hilton to the Econo Lodge!  My wonderful husband brought me dinner each night because I was so concerned about gaining back all the weight that I had lost prior to going to into rehab.
     My trip to Dana Farber to have a consult with their oncologist neurologist (try and say that five times fast!) proved to give us the answers for my numbness.  The neurologist looked over all my scans and records and came to the conclusion that my numbness was due to radiation treatments that I had back in September of 09.  Diagnosis... "radiation myelitis".  The peripheral nerves were damaged from the radiation.  He was hoping that the numbness would plateau and then the nerves would start regenerating.  The chances of this kind of damage happening are like one in a million and I got to be that lucky one.
     I was discharged from rehab in a wheelchair.  Thank goodness we had renovated the downstairs bathroom and our master bath before all of this happened.  Over the next four months the numbness increased and finally plateaued the end of October.  I am completely numb from my waist down and unable to stand or walk at this time but the good news is my disease is stable and the tumor on my lower lumbar has shrunk, and my broken clavicle.....it healed on it's own.  We move forward and try and find a new normal in all of this.  I have no idea of what God's plans are, all I can do is cling to His promises.  "And we know that in all things God works for the good of those who love him, who have been called according to his purpose"  Romans 8:28
   

2 comments:

  1. WOW!! and I thought my "story" was unique....Praying for you and your "boys" Only 80 days til SPRING!!!! "Snow" if you could sell it you'd be RICH!! ((hugs)) Norma

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  2. Hi. Erica35 here from YSC. I'm so sorry to hear about the radiation myelitis. It is tough when the treatment that extends our life also decreases the quality of it. I don't know if you recall but I also had radiation damage but to my brachial plexus. Seems to happen to less than 1-2% of people receiving radiation for cancer. I'm glad that the damage stopped progressing. At least now the healing begins. Sending lots of hugs your way. Erica

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