Lung Capacity

Well... an update is a little bit overdue by this point but if you keep reading, you will understand why.

I got the results from my CT on April 3, a week after I had the scan.  My parents and I met with my oncologist who informed us that things had gotten ... you guessed it, worse!  The plan of starting maintenance chemo immediately was surpassed to my "last" known option: the clinical trial.  My oncologist here had already put the word in to Halifax regarding my eligibility to the trail based on what my CT showed.  I confirmed that I wanted her to go ahead and continue with that.  She had to contact one of two oncologists in Halifax who are overseeing the trial.  My dad asked who they were and the first one that was mentioned was Dr. Colwell.  I spoke up and said I wanted him before she had mentioned the other oncologists name.  Dr. Colwell was the oncologist who started me on my very first (and horrible) chemo and I liked him very much.

From the moment I left the hospital until about 10 days later, my body was in shut-down mode.  My hands shook, I was freezing cold, I couldn't sleep, my stomach was so upset I couldn't eat, I lost a good 10 lbs, I had about 8 cold sores... It was by far one of my lowest points thus far of my almost 28 years.

To say I am F***ing pissed off is an understatement.  I don't think there's anything I wouldn't sell/do to get rid of this GD disease.

I started to experience some pain again and automatically my mind spins around how bad the cancer must be spreading.  I was laying in bed one night, not well, laying on the left side of my body and I had these stabbing pains in my lower left lung/heart.

This worried me because my oncologist told us that I have new, bigger, tumors in the lining of my left lung.  The biggest is 5 cms and is on top of my heart. 

My parents met with my oncologist one afternoon without me as I was laying low and stayed in bed.  They ran into the Palliative Care Director aka my pain doctor and she said she would come by on Thursday evening (before Easter weekend).  She spent over two hours with me.  She checked my oxygen level and resting heart rate.  No surprise that my resting heart rate was in the 80s when it 'normally' for me would be in the 60s if I were in the kind of shape I wish I were in!

I was informed that my oncologist had contacted Halifax after meeting with my parents and my file was under review by the clinical trial team.  My pain doctor explained that I have been more exhausted and some of the clinical symptoms have returned, because there is no more chemo helping the fight.  This is me 100%.  I have been freezing cold, yet sweat and constantly feel like I stink of BO (sorry if you ever catch a wiff HAHA!). But in all seriousness...it's the tumor trembles I think... my nervous system trying to fight off the intruders.

My pain doctor told me she had called the oncologist I am waiting to see in Halifax. She wanted to clarify if she could give me a huge dose of steroid (if needed from pain) to help relieve the inflammation of the tumor on my nerves (literally and figuratively). Dr. Colwell in Halifax said it was fine if I had to get a dose of the steroid.  Apparently early in my pain Dr's career she had a patient who had previously been given a shot of steroid and then was no longer eligible for a clinical trial that could have saved her life.    I was also informed that she personally knows Dr.Colwell so she told him I was a patient of hers.  He is out of the office this week but said he would keep an eye out for my file.  It isn't likely he had a chance to look at it before he went away so I now don't expect a call until next week.  

I am going into this with blinders on.  I know that I most likely have to move to Halifax.  When and for how long I don't know anything yet.  It's frustrating to sit here and my mind wanders all of the time if the cancer is spreading through my body.  Any ache or pain brings on an instant panic attack wondering what that pain means.  Because my tumor is sitting on my sciatic nerve root I have weird sensations often and although they likely "hurt" I can't feel anything because of all of the dead nerves in my back/hip/leg foot.  I haven't been able to feel my right foot for 3 years now.  I've noticed in the past couple of weeks that the numbness, the pins and needle feeling is thicker.  That's the only way I can describe it.  So I know that means worse.  

I feel like I am gradually getting to the end of my rope.  I am sick of the medical system, sick of cancer, sick of having to give up my life as I was knew it.  Sick of selfish, ignorant people, sick of the complaining about NOTHING.  

I AM SICK OF BEING SICK.

May 17th will be 3 years of this battle...