Courage and Strength

"Courage is doing what you're afraid to do.  There can be no courage unless you're scared." -Edward Vernon Rickenbacker-

During my time rehabilitating from my kidney, my cousin was diagnosed with lung cancer.  He was just a couple years older then I am now.  I will call him M.  The kindest person you would ever want to meet.  An amazing family with a lot of brothers and sisters to boot.  I couldn't help to put myself in his shoes because his cancer was advanced.  I sometime would get reports on his condition and just be numb by everything he and his family was experiencing.  In January of 2009 M loss the battle he fought so well.  I pray every night for his families strength and courage to move forward.  I am told often, "I could never do what you did."  I didn't ever believe in a million years before this diagnosis that I would ever be tested to this extent.  I do truly believe that I am so much stronger today then ever.  Physical strength not so much, we will get into that soon.  Emotional strength is what I mean.  I look at things from a different perspective.  I see Gods hand in so many things that I use to ignore 6 years ago.  I give people who are rude and cut me off on the road a pass.  I think to myself what is going on in their life that troubles them.  I can't tell you how many times I had terror running through my mind and still had to go on doing my daily activities.  I am sure I probably cut a few people off on the road as well.  In fact I think I recall seeing a few fingers in the last 6 years in my rear view mirror:)

Now that the prep talk is over lets talk about MDA.  Wow, that is quite a place!  I cannot say more wonderful things about it.  I love my doctors and nurses.  My doctor still freaks me out a little.  I see him every 3 months.  All clear so far!  I walk into MDA and I am humbled immediately.  Teenagers with their jeans hanging down on their backside like on the streets.  The only thing different is they have no hair and they are wearing a mask.  A young couple in their 20s walking down the hall hand in hand.  The PICC line hanging out of his shirt sleeve.  Some are here and new to the system and some are there to follow up after several years of being cancer free.  Either way, they are all survivors on that day!  God bless you MDA for doing what you do so well!
  My husband and I wanted to start the New Year of 2010 out being healthy and strong.  We already had gym memberships, but had decided to go at 5am every morning before work.  I was having difficulty after the surgery with climbing stairs and needed to build my muscles.  I would do the treadmill and precor.  I will tell you that I do not like working out at 5am. Sorry Honey!  Once in a while I could convince him he wanted to stay in that bed.  I tried to workout 5 days a week.  I could always tell how I was doing with strength by walking up the stairs at the gym.  The strange thing about my strength was I was getting weaker instead of stronger?  Now, I don't know about you but, I am a nurse and cancer survivor, I know my body really well.  From aches and pains to lumps and bumps.  I think I might be a little more lumpy these days:(  I said to Chris, "I know my body and I can tell you something is wrong."  I have no pain, it was like by legs won't work.  I found it hard to climb stairs and get off a chair without pushing on the arms.  To squat down to pick something up, forget it!  I could squat but had to push up on the ground to bring my legs back up.  I called the doctor and told him I needed a neuro consult.  I first thing I thought of course was a spinal mass.  Here we go again!  I had an appointment this past summer with neuro. They did a MRI of the spine, normal.  Spinal tap, normal.  Blood, normal.  EMG, showed irritation in a nerve root. It was the one that controls the upper legs.  They were baffled.  There was no cancer, thank God.  They blamed it on the Lupus.  I thought that was strange and so did my lupus doctor.  They kept pointing fingers at each other.  Its cancer related, its lupus related.  People can we all get on the same page please!
Luckily, my lupus doctor gave me physical therapy twice a week.  During this time, I noticed the strength issue was more right sided.  I was working the legs but not seeing any improvement.  My lupus doctor finally sent me to a specialist.  He also was puzzled.  That guy sent me to a neuromuscular doctor from Baylor.  I walked into his office.  He asked me to only answer the questions, give no other information.  Yes, the Dr. House of Neuro!  Within ten minutes he had my diagnosis.  Are you ready for this one? Radiation induced lumbarsacral plexopathy.  5 years ago I had radiation to my pelvic region due to colon cancer.  It changed my DNA in my neurons in that area.  I have lost that nerve conduction in that area.  So my legs muscles are fine but the nerve isn't telling them to get your butt up those stairs.  Finally, someone knows what is wrong!  Ok, lets say this is it.  What do we do now?  What is the treatment?  "There is no treatment and no cure"  It will not get any better, it will continue to get worse, but at some point it will plateau and stop progressing. "  You have got to be kidding me!  Un ________believeable.  I looked it up on the internet and their I was in all its glory.  So, as I said before, I guess I will never run a marathon.  Now, you are probably having a visual of me dragging my leg or limping around.  No, I look completely normal, just don't ask me to climb those darn stairs.  I can climb the stairs but it takes me a while to get up there.  Our home is two stories.  Thank God for Maria my housekeeper.  I tell the kids, "clean your room, I will be up there is ten minutes to check". Oh right!!!!  I send Chris up there instead:)
I am still wrapping my head around this one.  I go to P.T. twice a week and feel like I am slightly stronger.  I hope that I have plateaued.
I write this blog not to get pity for my challenges.  I write to say that no matter what I have been through I will always be thankful that I am here to write to you.  God obviously has a plan for me.  Being a mother, wife, patient advocate or a blogger that can inspire others when days are not so good.  I am not sure what his plan is, all I know is that I have gone against the odds and come out the other end with a stronger since of myself and those around me.  I am blessed and oh so thankful! Take care!!