Sorry for taking so long...

I apologize for taking so long to update the blog but the winter and early spring were extremely busy.  In December we returned to the General Hospital and saw a Dr. from France who was experimenting with a new form of radiation.  He agreed to work with me as he has had some success with treating Neurofibromitosis. So in late December I started 28 days of radiation.  The treatment was extremely tiring and made me very sick and it was very hard to make it through the entire 28 days.  However the nurses and radiation technologists were wonderful and as dreadful as it was they made you fell as comfortable as possible.
In the months since the radiation finished I am still feeling tired and have difficult getting through a day.  I have not returned to work and don't expect to in the next couple of weeks.
We finally received a decision from OHIP, one year after the hearing. They denied our appeal and no costs will be covered.  We expected this but it was still extremely upsetting to read in black and white.
I have a scan in July and see the Dr. at the end of the month, so I promise to update the blog shortly thereafter.

Take care,

Lisa

Finally Some News

Sorry that it has been so long since my last blog but it has taken a while to get things sorted out since the bad news in September.   In September I went to the Mayo Clinic for my 6 month checkup and unfortunately the tumour had grown and 2 additional tumours were found.  The Dr. recommended that I stop the chemo. About 2 hours after hearing this I was on a plane heading back to Ottawa trying to figure out what to do. As you can imagine this has been a very difficult time.
A few weeks after returning, I contacted Dr. Poulin Chief of Surgery at the General Hospital and he put me in contact with a Dr. who is working here from France.  He works specifically with patients where chemo has failed.  It appears that in a few weeks I will be starting radiation.  It will be a crueling schedule 5 days a week for a month but fingers crossed it will work.

I hope that you all have a wonderful holiday season and all the best in 2011.

Lisa

More Scans

Well it certainly has been a while and there have been a few ups and downs.  Unfortunately last week I had to go back to the Emergency room.  I was having sharp pains in my stomach and my lower back.  After  waiting for 5 hours the Dr. thinks that I might have kidney stones or that I have muscle pain due to dehydration.  I ended up getting another bag of saline and went home.
On a positive note my disability was approved and I am now working 3 days a week.  The schedule is much easier on my body.
Now that I have been on the medication for over a year (on and off), it is really starting to taking a toll.  This week I could not even go to work as I was so tired, I think I slept for an entire week.
Last Friday I went to my family Dr. and I have lost more weight and unfortunately I have to have a stomach and pelvic ultrasound.  I guess this is my life for a while.

Take Care,

Lisa

OHIP Hearing

I am very pleased to say that the OHIP hearing is over.  This morning was very tiring and emotional.  Basically the hearing was similar to a mini court trial.  The Appellant (me) went first and we tried to present our case.  Our goal was to try and prove that my treatment is not experimental, I was the main witness.  The easy part was answering questions by my representative.  However, when the Ministry's representative started to ask questions it began to feel very personal.
The hearing lasted 3 hours and after it felt like I ran a marathon. One positive point from the hearing is that we know that our first appointment and tests at the Mayo Clinic will be paid for by Mayo. The reason this is paid for is because the "experimental treatment" has not yet begun. Other than that we have no idea how things will go.
Well that's the latest.

Take care,

Lisa

Hearing Still On...

Well it has been an interesting month.  I have had to go to the hospital twice for dehydration, as I am not able to eat and drink very much.  I have also lost more weight and my abdomen has been swollen .   I' m not sure why this month has been worse than others.
I am still waiting for my disability to kick in, I applied almost 3 months ago, it is crazy how long things take.  I think if I had gone on disability full time it would have been a lot easier.
The only good news is that the OHIP hearing date is still set for May 28.  Hopefully things will go our way.  I wish I had more positive news to report, hopefully next time.

Take care,

Lisa

Hearing Date Set

Well it certainly has been an interesting couple of weeks.  Two Saturdays ago, I was flipping through the channels and landed on W5.  It was all about healthcare in Canada, and how bad it is getting.   If you get the chance I highly recommend watching it, it shows what a downfall we are in.
Finally after at least 2 postponments a hearing date has been set, May 28.  That was the news for 2 weeks.  Then yesterday in the mail, I received a letter saying that the OHIP Dr. was not available on May 28.  Do you not think they should have checked beforehand?
I have been back on the meds for one month and the side effects are starting up again, I'm not sure if I can take another 6 months of this.  Hopefully with summer coming and being able to get outside more I will start to feel better.

Take care,

Lisa

Stable

It certainly was a long trip this time.  We arrived in Minnesota Sunday night, and were at the Hospital bright and early Monday morning.  Monday was a long rough day, it felt like my body was drained of blood.  I also had an MRI and a heart test. After all that I was completely exhausted.
Tuesday morning we met with the Dr.  The mass is stable, on the one hand this is positive but I was disappointed that it had not decreased.   In addition the MRI showed that I also have gall stones. It certainly was a lot to digest. After 9 months of being on the treatment I was hoping for more positive results.
Since the treatment is experimental, it is so difficult to know what to expect.
I am now home and will take some time to think about the past few days, hopefully I will be able to put a positive spin on it all.

Take care,

Lisa