Posting Hiatus is Over!

I realize I haven't posted anything since September 15 and at the time I was letting it go because I managed to have favourable/stable results with the clinical trial.  Mom did further research after the trial began and she found out that patients usually get 6 months of relief from Sutent (the pill I was on). Before my December 16th doctor's appointment I had been feeling great.  I honestly had never felt better.  For the past 2 weeks I had gone to the gym and done Group Power (aka Body Pump for all of you non-YMCA members!).  My best friend went with me the first few times where I was "taking it easy" and for me I was but I felt great, upped my weights each of the 4 classes and saw some immediate changes on my body.

Now, from the update I am about to give, things have changed as I am sitting here with an Aerosol on trying to ease my breathing.  You know, what the majority of all 28 year olds out there are doing on their snowy night in.

The nurse from my check up told me she would be back after the doctor was in.  Nothing out of the normal... until my Oncologist walks in and tells me "I'm afraid I've got some bad news"...  He tells me that things have grown so I was being booted out of the oral part of the trial (remember this is a 2 part trial- one is the oral pill, the other is an IV treatment once a week). I had made it through 5 cycles of the oral medication.  I had until January 5th to decide whether I wanted to start the IV treatment in Halifax, and to use the scans I had just had as my baseline scan.  The clinical trial coordinator (my nurse) doesn't know when trials start/stop although she sensed this one would be shutting down soon as very limited space remained.  There was 1 space left for a "Ewing's" patient and they were holding it for me to make my decision over the next week-10 days.

In hindsight I remember having a week of pain after my return trip of cycle 4.  The same can be said for cycle 5.  On the return drive, one of my (many) questions was how in the heck I was supposed to make it to Halifax for one night a week (blood work, doctor appt, treatment...) when I couldn't handle the drive every 6 weeks.  I wanted to look into going to Toronto, or if I could be transferred there within the trial.  My uncle lives in Toronto and I was prepared to be on the next flight given the ok.  I could essentially just settle in with him and go to my appointment once a week.  Plus, the oncologist I saw in Nov 2013 was still working at the Princess Margaret and I wanted to see what she had to say.  We got my Fredericton Oncologist involved in this and she was able to work a way for me to get the drug in Fredericton, the same schedule and dosage as the trial, however, I am not officially in the trial anymore.  I was told I would start in the New Year, and told Halifax thank you, but no thank you, I couldn't physically make the trip once a week, for a 30 min IV treatment.  

December 23rd arrived with a pain vengeance.  I had to take Dilaudid on an almost daily basis.  I decided after feeling crappy for days that I would take my temperature one night when my sister, her fiance and the kids were visiting.  So much for our planned game night... Even with Tylenol, Toradol, and other meds on board I had a fever.  Mom was working evenings that night so she met me outside the ER with a mask and because I am an oncology patient, I was so fortunately blessed with "Fever Card" (basically a go directly to jail, do not pass go or collect the $200 card).

I felt like I had pneumonia.  It's always a good sign when the 2 people assigned to your care in the ER have never heard of your disease.  I should have known where it was going but i really felt like crap and knew I had a fever.  The next thing I know is that I have all of these blood tests, urine tests, a chest x-ray and a Rosetta Stone on learning Italian next...(the one thing I may have enjoyed!).  The results from those were nothing shocking.  They couldn't even read my chest x-ray.  They knew that I had an infection given the fever but they didn't know where.  I had to stay in the ER and get an IV antibiotic overnight and could be discharged after I saw my doctor in the morning or I could go home and end up back in the ER in a day or two in worse conditions.  As much as I LOVE the ER, it was all I could do to spend one night there.  I followed the meds up with an 10 day antibiotic.  I actually did start to feel better.  I got to spend December 24-26 with family and visiting family but my luck ran out and it was in no time, I was back in the hospital in pain.  I had since been lectured by a couple of my doctors to call them the next time I think about going to the ER because my case is so complicated and rare that it would take a week for them to sort things out themselves and they would call in advance and sort things out for me).

When I went back into the hospital right after Christmas, my right leg looked like it had eaten my left one as well.  I couldn't lift my leg, I had to use 2 hands to move it.  The fluid build up was actually crazy (will post a pic at the end).

I was moving on into the Palliative Care until my pain meds were switched, and my leg could drain.  Part 1- I was losing all other pain killers I had ever tried, and switched to Methadone.  Part 2- I lost over 10 lbs of fluid in my right leg.  I was ordered a huge dose of steroids (a favourite of mine if you can remember about 3 years ago...I am being very sarcastic), and my meds were constantly changing: time, frequency, dosage, etc.  With the huge steroid dose and combined bed rest I did notice a significant difference in my right leg.  I no longer needed my crutches to hobble around after about the second day, and could stand up and walk without pain.

I was let go on Saturday morning on a weekend pass, and if all went well I'd be discharged on Monday morning.  I lay low for the weekend but found the next week challenging, and then the next.

*SIDE NOTE*: I was able to start the IV treatment the last week of December, so "cycle"-wise I was only a few days lagging on treatment.  

The pain continues to increase, and so do the crappy side effects.  I find myself having to use Dilaudid as a "breakthrough" medication when I have pain, the problem is I am trying to find out the correct Methadone dose and when those two meet it is lights out for half a day or more for me.  I have been getting extremely frustrated by all of this.  This is supposed to make me feel better to do more of the things I love to do yet here I am every day, in pain, crying, losing out on another day.  I had this debilitating cough before going into the hospital where I would say one word, have a 5 min coughing fit- the one where you pee your pants and one eye sticks out 6 inches further from the other- THAT kind. 

I continue to do research about what is out there for me and I keep getting the half-smile, shoulder shrug, "not much" from Doctors.  HOW MUCH does someone have to go through before they catch a break?!?!???  This IV drug I am receiving now is called Temsirolimus, and is generally used as an anti-rejection drug for transplants.  There are several Phase 1 clinical trials starting up around the world at the moment.  I found 2 in Boston, 1 in England and 1 in Toronto.  My oncologist and the oncologist in Toronto spoke and by the ways of this country there was only the one in Toronto that MAY be an option.   Again, the trouble with a Phase 1 trial is that it has never been tested on humans before.  The acceptable limit to give in adult, everything about how it will react, etc. is not known.

In Halifax, I would have been on the official trial.  Whereas I am given a little more flexibility with this, I can take some of my supplements again (as long as they don't interfere with the medication.)  I started taking Grape Seed Extract, Turmeric, and I continue to juice.  I haven't had the same appetite I once did and this is a known/common side effect.  I am still on steroids (waiting to see if I can ever gradually ween them off) so I have been eating more than I was but I still wouldn't say it is my normal appetite.  I also don't have a CT every 4 weeks.

I just completed my 6th treatment today but my oncologist says it will take AT LEAST 2 cycles to see and note any changes.  4 treatments= 1 cycle.

I had a pain crisis last weekend.  I felt I had a sore sacrum (which is nothing new), and I was recommended to take a 2mg Dilaudid over an Ibuprofen (because of the high risk of bleeding).  I asked mom to get me a 2mg Dilaudid.  And then this happened in 15 minutes:

-given 2 Tylenol

-given 20 mg Torodol

-given 6 mg Dilaudid

-given a 2mg needle of Dilaudid

My "this too shall pass" pain went from a 30 min to a 4.5 hr pain crisis which required my at-home oxygen tank (he needs a name if I ever see him again...suggestions?) to be booted up for my drug-en doused slumber.

So, how are you supposed to feel confident that the drug you are being given is going to buy me some more months to the next one comes along?  My breathing is now essentially non-existent.  I used to run 5km, play soccer, speed skate in freezing cold rinks, yet I will stand up from being seated and cough so hard I have peed my pants.  Ask me how humiliating it is, to a 28 year old, that I am seriously looking at purchasing my first pack of depends.  I am not out with my fiance, finalizing details on our tropical wedding.  I AM IN SHOPPERS DRUG MART COMPARING THE DIFFERENT STYLES OF DEPENDS!!

Whatever version you think I'd decide over the Depends one, you're a winner!

I can feel my breathing deteriorating, sometimes I just ache and I feel like it's coming from other energy sources.

I don't know if I have ever spoken about this or not before, but I see letter and number sequences.  I wake up at the same time for 3-4 weeks and then it is gone!  I would wake up at 3:34 am every day for weeks.  I forget what it means now but am going to have to re-check.  Secondly, I have always been *cough* amazing at word/number games (i.e.: Wheel of Fortune).  I went to get license plates for a new vehicle I picked up in Nova Scotia, I told dad as the lady was walking toward us "JHR 434".  Guess what my plate is...

I feel like the drug isn't working, but that's only because I have these awful pain crisis, I watch my leg shake like a power line but nothing can touch it.  I will LOSE MY COOL with you, Buddy!

My INSANELY, INSANE moment with the angels...

I started asking for something everyday and they were always so accurate that everyone was freaking out when all of a sudden a friend shared that she would be attending a night in February in SJ.  I bought my sister and I tickets!

Secondly:  I'd have to see comparison in person.  Your body.  Do what you want!

THIRDLY: My mom has been staying over with me when she can and it's been very helpful having a nurse as a mom.  She has been setting her alarm and getting me my methadone and a drink.  She was coming in my bedroom yesterday and I was making a stink face because of the smell of burnt toast.  She thought I was crazy until she all of a sudden she stops in her tracks and says that is so over-bearing.  No one had cooked anything that morning at any point in time, and neither of us had cooked in months, to boot!  I have had more and more of these spiritual encounters I will call them, the more and more I begin to open up to them.  

Lastly:  I believe the more you open up to the universe, the more the universe responds to you.