Pain, Pain, Go Away

The past 3 days have been quite interesting.  Wednesday evening I started having more severe pain and I had been taking dilaudid around the clock for over 24 hours at that point.  My dad stayed over Wednesday night because of my pain and my knee was weak and I was having trouble walking.  That night I laid in bed crying and screaming.  The pain was unbearable.  On top of it all, I was having spasms.  The nerves going down the side of my right leg were on fire.  I couldn't feel my right foot and a nerve in my quad that ran into my groin was hurting so badly.  I tried to rub it but it was so deep and the pain so intense there wasn't any relief.  I was skeptical to go to the hospital because before I was diagnosed the first time I spent anywhere from 10-15 hours in emerge and was never taken seriously.

At 3 am I got dressed and dad and I headed to emerge.  At this point, I couldn't bend to put my sock on and collapsed to the floor.  I was clenching my jaw together and breathing as if I were in labour.  My mom was working nights that night and met us in emerge when we arrived.  The ER was completely empty so I got right in.  I told the nurse I had a tumor pressing on my sciatic nerve for the second time and had already gone for chemo and radiation and this pain was not going to go away anytime soon.  If I were an animal, I would have been put down for sure.  I got into a room and the doctor was right in.  I told him that I was on 2mgs of dilaudid at home and it wasn't working at all.  The nurse started an IV and gave me fentenal every 5 minutes until the dilaudid shot of 8mgs arrived from the pharmacy.  I felt better almost instantly but was stoned out of my tree.  My family doctor was coming in to work in the OR Thursday morning and he was paged once he got there.  He ended up delaying a surgery to finish getting things organized with me.  I met with the director of palliative care to discuss pain management.  She was fantastic and a very, very nice person.  I called one of my best friends to come to the hospital after my family doctor spoke to my mom and I and told us he doesn't know if anyone would touch me surgically.  Not only is my cancer one of the rarest (1 in 3 million adults will get Ewing's), mine is in the most complicated area of the body.  I cried and cried and cried telling my mom I haven't done all I want to do in life.  I want to have a good career, get married and have a family.  I hope I can still achieve those things.  I have a lot to do before I am ready to leave this earth.

My friend showed up and I told her what was going on and we cried some more.  A nurse came in and asked me how my pain was and I told her it was fine I didn't have any pain.  She gave me another injection of 8mgs of dilaudid.  I was beyond stoned.  Instantly couldn't keep my eyes open, wasn't making any sense with what I was saying.  Mom was exhausted from working all night and she couldn't sleep at all because she literally had to say "Laura breathe" every 10 seconds for hours.  I was so out of it.

I was admitted and was sent to my room around 12:30 pm.  I ended up in the stroke unit and found out after it's where one of my good friends' mom works as the nurse manager.  I had a private room which was nice.  The pain was under control and they gave me a butterfly, which is a little plastic device that stays in my arm so I don't have to continuously get a needle in my arm every 4 hours.

I stayed in the hospital until this morning when I was discharged at 10:30.  During my stay, the doctors played around with the dose of dilaudid to figure out what worked for me to get rid of the pain but that didn't make me stoned.  In the beginning I was given 4mg shots and every time my eyes would close almost instantly.  When I tried to eat, I was sick.  I asked for 2mg shot and it covered the pain but I wanted to try the 3mg and see if that still worked without making me stoned.  3mgs was perfect.  In order to change that to a PO dose, it worked out that I would be taking 18mgs twice a day of long acting dilaudid.  I have extra to take whenever I have "breakthrough pain".  Last night I was given my last 4mg shot at 6pm.  At 8pm I was given 18mgs PO and then at 10pm I was given a 2mg shot.  They had to give me a little more via shot to ensure the transition went as painless as possible.  I slept all night without waking up.  This morning I woke up at 7:45 and was hurting.  I also could feel a pain in my groin.  I pulled a muscle somehow during my spasms.  My right leg was so weak from everything being so tight and clenched together that when I laid in bed on my back with my knees bent and feet n the bed, if I let my right leg fall to the side it was too weak to pull itself back up.  I had to use 2 hands to push my leg back up.

At 8:15 I was given my 18mgs of long acting and 4mgs of fast-acting dilaudid.  I laid in bed and within half an hour was pain free.  What scares me the most is knowing how much pain my body really is in but is being masked by the drugs and the damage my body might incur. Last time, I got a dent in my right hamstring because the nerves were pinched so much that the muscles weren't getting the nutrients they needed and they died.

I got word on Friday that my PET scan is on Monday in Moncton.  Depending on the results, I may be going to Toronto.  If the cancer is only in that one spot I will go to Toronto.  If the cancer has spread, Toronto won't likely look at me.

Fingers crossed that it hasn't spread and that I can get to Toronto and hear what they have to say.