I can't believe that this year has come to an end, actually I am very relieved. I am hoping that 2010 will be a much better year. Last week I had my monthly Dr's appointment, unfortunately my blood pressure was high along with my hemoglobin.
I am still having trouble sleeping but am hoping that the Christmas break will give me a chance to catch up on my zzzzzz's. It would also be nice if I could eat some of the holiday treats!
I hope that you and your family have a wonderful holiday season and all the best in 2010.
Take care,
Lisa
Thursday, December 24, 2009
Monday, November 30, 2009
Rough Times Again
Unfortunately it appears that I have hit another stumbling block with my medication. I believe that this is now the longest that I have been on the medication, and I guess I am really starting to feel the whole range of side effects. I am having trouble eating, and the pain in my stomach after I eat is often intolerable. I did speak to the Dr. at the Mayo Clinic and if the symptoms continue I will have to stop my medication again.
On a brighter note at least I won't have to worry about putting on a lot of weight over the holiday season!
That's it for now, take care.
Lisa
On a brighter note at least I won't have to worry about putting on a lot of weight over the holiday season!
That's it for now, take care.
Lisa
Thursday, November 19, 2009
What a night!
Last night was the big Comedy Night and Silent Auction. The day was extremely busy for me as I had to have my monthly blood work and Dr's appointment. Depending on the results of the bloodwork my medication may be increased to 3/4 dosage. I was very happy by the time 7pm arrived.
It was so nice to see so many familar faces and faces from the past. The turnout was overwhelming. I hope that everyone enjoyed the comedians and laughed as much as I did. My stomach is still sore today.
The silent auction prizes were amazing and I hope that everyone got what they wanted. A big thanks to all the organizers and volunteers you put on an incredible event.
Take care,
Lisa
It was so nice to see so many familar faces and faces from the past. The turnout was overwhelming. I hope that everyone enjoyed the comedians and laughed as much as I did. My stomach is still sore today.
The silent auction prizes were amazing and I hope that everyone got what they wanted. A big thanks to all the organizers and volunteers you put on an incredible event.
Take care,
Lisa
Saturday, November 7, 2009
No Change!
I am feeling pretty good lately and have been able to eat some food. I finally got results of the MRI that I had at the MAYO clinic. The tumour is stable, so good news in the fact that it has not grown. Hopefully when I have the next MRI in 6 months the tumour will have decreased.
One huge side effect of the chemo is that I am unable to sleep, unfortunately this is really starting to have an impact on me now, I feel so tired in the day but as soon as I put my head on the pillow I am wide awake.
I am really looking forward to the comedy night on Nov 18th, it will be so great to see everyone. I don't get out of the house too much so I might as well do it for something so exciting.
Take care and we'll chat soon.
Lisa
One huge side effect of the chemo is that I am unable to sleep, unfortunately this is really starting to have an impact on me now, I feel so tired in the day but as soon as I put my head on the pillow I am wide awake.
I am really looking forward to the comedy night on Nov 18th, it will be so great to see everyone. I don't get out of the house too much so I might as well do it for something so exciting.
Take care and we'll chat soon.
Lisa
Sunday, October 25, 2009
On Again!
Well tomorrow I start my medication again and I am not looking forward to it, hopefully things will go a lot smoother this time. However, I am pleased to say that the mess on my arms is almost cleared up. I had my monthly appointment with my Dr. last week and I have gained 5lbs, plus she thinks that my abdominal area feels softer. All this is pointing in a positive direction.
I am looking forward to the comedy night on Nov 18, the organizers have gone above and beyond.
I am off now to see my gorgeous niece and nephew, take care.
Lisa
I am looking forward to the comedy night on Nov 18, the organizers have gone above and beyond.
I am off now to see my gorgeous niece and nephew, take care.
Lisa
Monday, October 19, 2009
Itchy Arms!
So it's a week later and my arms are finally starting to heal. I ended up going to the hospital on Thanksgiving Sunday as my arms were very hot, red and extremely itchy. It turns out the medication aggitated my excema. I could not move my arms for a few days as every move hurt.
I went back to work today and my arms look like they belong to a 90 year old! They feel like I have been doing bicep curls all day. They are so tired. On that note, I will sign off and let my fingers do some channel surfing!
Take care.
Lisa
I went back to work today and my arms look like they belong to a 90 year old! They feel like I have been doing bicep curls all day. They are so tired. On that note, I will sign off and let my fingers do some channel surfing!
Take care.
Lisa
Monday, October 12, 2009
Off Again!
Well it has been a hectic week but a pretty good one. Anna and I went to a Sens games which is one of my favourite things to do. It was so nice to actually get out of the house. Plus the Sens won. Unfortunately I have developed another bad reaction to my medication. I have a rash which looks like a burn on my arms, it is so painful. I spoke to my Dr. in the States and she has taken me off the medication again. So fingers crossed it will go away. Well let's hope that things get better, because wearing long sleeve shirts with a burn is not fun!
Take care,
Lisa
Take care,
Lisa
Tuesday, October 6, 2009
My Story Begins with a Routine Checkup
My name is Lisa Nancarrow, I am 34 years old and I have been told by several Dr's that I am dying. When I was 18 I went for my yearly physical where my Dr. found a mass in my stomach. After a few tests and an open biopsy I was diagnosed with neurofibromitosis, a genetic disorder where tumours grow at the end of the nerves. Typically the tumours grow just under the skin, unfortunately my tumour grew in my stomach. At that time Dr's decided not to operate as the tumour was not affecting my everyday life. They said if it did grow the tumour could be debulked.
In 2007 I started to have severe abdominal pains, in the beginning I was diagnosed with a kidney infection. Then I began to loose weight. Finally the Dr's discover that the tumour had grown by a couple of millimeters. It was discovered that the tumour encased major organs and was attached to the nerves in my legs so surgery was no longer an option.
It was now almost the end of 2007 and I had lost close to 30 pounds and was basically on a liquid diet. The Dr's were not sure how to treat the tumour, so the next step was to refer me to an oncologist in Toronto even though the tumour is not cancerous. The trip was a waste of time as the Dr. had no advice for us.
Back to square one in Ottawa, I was referred to another cancer specialist which took another 3 months. He had seen my file and apparently had some advice. So with my fingers crossed I went to see him. To my dismay he said that after he re-reviewed my file, his only suggestion was palliative care. For the first time I burst in tears in the Dr's office, I basically told him to shove it and when he went out of the room to get some paperwork I left.
So the only option I had was to find my own solution. So back to the first Dr. at the General who was still looking into my file. After some consultations with other Dr's he discovered a experimental program at the Mayo Clinic in Rochester Minnesota which deals specifically with my disease. After a year and a half of no answers it appears we were finally heading somewhere. He sent my file to the clinic and they were willing to meet with me.
My Mum and I flew to Minnesota, met with the Dr and I went through a battery of tests. Fortunately I was in good enough health to be accepted into the program. We are now 4 months into treatment and I have been to the Mayo Clinic 5 times. It has been very difficult, I take daily chemo pills and my body feels like it does not belong to me, but in the end it will all be worth it.
A big thanks to everyone for all your support, I promise to keep you up to date as often as I can.
Take care,
Lisa
In 2007 I started to have severe abdominal pains, in the beginning I was diagnosed with a kidney infection. Then I began to loose weight. Finally the Dr's discover that the tumour had grown by a couple of millimeters. It was discovered that the tumour encased major organs and was attached to the nerves in my legs so surgery was no longer an option.
It was now almost the end of 2007 and I had lost close to 30 pounds and was basically on a liquid diet. The Dr's were not sure how to treat the tumour, so the next step was to refer me to an oncologist in Toronto even though the tumour is not cancerous. The trip was a waste of time as the Dr. had no advice for us.
Back to square one in Ottawa, I was referred to another cancer specialist which took another 3 months. He had seen my file and apparently had some advice. So with my fingers crossed I went to see him. To my dismay he said that after he re-reviewed my file, his only suggestion was palliative care. For the first time I burst in tears in the Dr's office, I basically told him to shove it and when he went out of the room to get some paperwork I left.
So the only option I had was to find my own solution. So back to the first Dr. at the General who was still looking into my file. After some consultations with other Dr's he discovered a experimental program at the Mayo Clinic in Rochester Minnesota which deals specifically with my disease. After a year and a half of no answers it appears we were finally heading somewhere. He sent my file to the clinic and they were willing to meet with me.
My Mum and I flew to Minnesota, met with the Dr and I went through a battery of tests. Fortunately I was in good enough health to be accepted into the program. We are now 4 months into treatment and I have been to the Mayo Clinic 5 times. It has been very difficult, I take daily chemo pills and my body feels like it does not belong to me, but in the end it will all be worth it.
A big thanks to everyone for all your support, I promise to keep you up to date as often as I can.
Take care,
Lisa
Thursday, October 1, 2009
Starting my blog
Hello Everyone,
I just wanted to give you a quick update on how things are going. I just got back from my 5th visit to the Mayo clinic. This visit was long and very tiring. Rochester, Minnesota where the Mayo clinic is located is not exactly a "happening town" , the majority of the people who live in the city are employees of the clinic and most of the land in the city is owned by the clinic. The grounds are very well taken care of, no garbage and beautiful flowers, no employees smoking outside the front of the hospital!
The Mayo Clinic is remarkable, it looks more like a 5 star hotel than a hospital, you do not have to wait for appointments. Even though I am going through this terrible ordeal, in a while I feel like I am very fortunate to have the wonderful treatment that I am getting at the clinic.
The summer was extremely rough, everyday I take 2 chemo pills. I am still trying to work full time. The medication decreases my appetite, makes me nauseas and upsets my stomach. Towards the end of August I was getting more tired and started to develop sores in my mouth, I couldn't even drink a cup of tea, to those who know me, tea is my lifeline!
Fortunately we were going to the Mayo clinic the following week. While I was at the Clinic I had a MRI (I am still waiting for the results), a heart test and blood work. All of the tests were fine. The Dr. decided to decrease my medication for a month and we will go from there.
Thanks so much for all your support and I promise keep you updated.
Take care,
Lisa
I just wanted to give you a quick update on how things are going. I just got back from my 5th visit to the Mayo clinic. This visit was long and very tiring. Rochester, Minnesota where the Mayo clinic is located is not exactly a "happening town" , the majority of the people who live in the city are employees of the clinic and most of the land in the city is owned by the clinic. The grounds are very well taken care of, no garbage and beautiful flowers, no employees smoking outside the front of the hospital!
The Mayo Clinic is remarkable, it looks more like a 5 star hotel than a hospital, you do not have to wait for appointments. Even though I am going through this terrible ordeal, in a while I feel like I am very fortunate to have the wonderful treatment that I am getting at the clinic.
The summer was extremely rough, everyday I take 2 chemo pills. I am still trying to work full time. The medication decreases my appetite, makes me nauseas and upsets my stomach. Towards the end of August I was getting more tired and started to develop sores in my mouth, I couldn't even drink a cup of tea, to those who know me, tea is my lifeline!
Fortunately we were going to the Mayo clinic the following week. While I was at the Clinic I had a MRI (I am still waiting for the results), a heart test and blood work. All of the tests were fine. The Dr. decided to decrease my medication for a month and we will go from there.
Thanks so much for all your support and I promise keep you updated.
Take care,
Lisa
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