Thursday 30 August 2012

Toronto trip August 28, 2012

So hubby came with me to the latest Toronto trip to see Dr. Rebecca Gladdy, the surgeon who will be in charge of my surgery. We left our house at 9 am and arrived safely to Princess Margaret Hospital at 215 pm. we weren't scheduled until 345 pm but it was nice to arrive early. We registered at the desk and were called in to a waiting room immediately. We met Dr. Barr, who is Dr. Gladdy's assistant. He went through the general questions, like how are you doing?, how's the pain? etc, etc. Then we met with Dr. Gladdy, she went through the scans that I had brought on CD from the hospital, the latest CT scan and MRI images. Well, the bad news was that the doctor in Ottawa, who wasn't actually a doctor but a resident had told me that the tumour had shrank. Well, I don't know where she got her information from because when Dr. Gladdy went through the scans and the reports, there had been no change whatsoever. That was the reason why I was depressed and crying yesterday. I have done 4 months of chemotherapy with no change and then 1 month and a half of radiation with no change.  I have realized that I need to take my health into my own hands. I have a few things I am going to start with, and I want to thank Shanna for helping me figure them out yesterday and giving me a shoulder to cry on. I realllllllly needed it. Number 1 goal is to quit smoking. I am setting my quit date for September 5th. The day after my birthday. I know it will be difficult, but I need to do this for my children and for my health. Number 2 goal is to start meditation and yoga. I have other goals as well but will post them as I am ready to.

Got offered two options, first option is an experimental chemotherapy drug called crizotinib. My tumour has ALK mutation, which is present in 10-15% of familial neuroblastoma cases .Here is some information on the crizotinib http://labeling.pfizer.com/showlabeling.aspx?id=676.  It isn't as harsh as the last rounds of chemotherapy and the side effects do not include hair loss which is good news for me. There is still the regular side effects such as nausea and vomiting, which I am not really keen on.... I've lost 49 lbs so far during all these treatments and although the weight loss is welcome it is not the proper way to lose weight as chemo weight loss is 50% body fat and 50% muscle loss. I was 190 lbs when this all started and am down to 141 lbs and still losing 1/2 to 1 lb a week. My appetite is non existent.

Second option is surgery. Although surgery will happen no matter what, Dr. Gladdy would really prefer that the tumour diminishes in size before they go in. But at this point I am not sure what I want to do. I am scared of doing chemotherapy again, although this time it would be a tablet and not through iv infusion. There is a good team of doctors set up to work on the surgery. So far I have 3 doctors, Dr. Rebecca Gladdy, who will be the general surgeon, Dr. Peter Ferguson who will be the orthopaedic surgeon, and Dr. Tom Lindsay who will be the vascular surgeon. There may also be a neurosurgeon involved depending on the complexity of the tumour attachment to the spinal cord. The general surgeon's role will be mostly the debulking of the tumour as well as anything that has to do with bowel area if there is attachment in the bowel, she will take care of that, the orthopaedic surgeon's role will be to try to save the femoral nerve, which at this point does not seem like it will be salvageable due to the symptoms I am already having in the left leg. I have left leg pain and weakness and numbness, but if anyone can save the femoral nerve, Dr. Ferguson will be the one that can do it. He will also take care of the spine and spinal cord if it is not too complicated for him, if not, a neurosurgeon will be involved. And lastly, the vascular surgeon's role will be to take veins from my legs and replace the ones they will have to remove from the tumour area as they are attached to the tumour. He will have to do a vein mapping procedure to mark which veins he can take from my legs to replace the ones they will remove. Dr. Lindsay is one of the senior vascular surgeons in Canada. I feel like the team that Dr. Gladdy has put together is one of the best teams I could have working on me.

The appointment ended at 5 pm and we decided to sit down at the diner and have lunch there as we did not want to try driving in rush hour Toronto downtown traffic. We headed out at about 6 pm and arrived home safely at 1130 pm. It was a very long day and I was very glad that Will came with me.

The rest of my cancer care will now be done in Toronto as there is nothing left for Ottawa to do. So in the next little while until surgery there will be a few more trips to Toronto. We are aiming for Sept 10 and 11 for the next trip to meet all the surgeons as well as having a pre-operation CT scan with all possible angles. It will be a 2-3 day stay to get everything done and my mom Suzanne will be coming with me for this trip. We are looking to get accommodations at Princess Margaret Hospital Lodge and hoping that the price is not too steep. I have a doctor's letter now stating that I need an assistant for travel and that helps as VIA will give my assistant free travel fare. If anyone has any other suggestions, such as cheap hotels or travel fare please let me know as we will need it.

Please continue to keep praying and having positive thoughts. And keep posting your uplifting comments. I love to read them here and on Facebook. I love you all and thank you

XOXOX
Priscilla and family

6 comments:

Womenfishing - Terri MacKinnon said...

Hi Priscilla,

We have beautiful accomodations in our condo that they charge 50.00 per night for... its really more of a condo space that is available with enough notice.

let me know if you want me to check into it more.

Also it is now 5 years since I decided Sep. 14th to quit smoking.. due to them finding 3 pre cancerous cysts in my throat.. best thing I ever did in my life.
Stay strong you will overcome this too... if you need a coach/mentor for this part..im your girl.

xo
Terri

Anonymous said...

Pricilla, I used to work with you at good old Wendys, lol... Anyways, i've been keeping up with your posts and I want you to know I'm thinking about you. I actually work at the cancer centre in Ottawa, so you come to mind quite often... You have such good insight into all of this and are obviously very educated on it all. Keep up with the blogging because I know it helps other people going threw similar experiences. Your a strong girl. Stay that way :) (although everyone needs a break from time to time, breaking down is ok too) Keep up the good work!
Laura st.p.

Anne-Rachel said...

Hi Priscilla,
It took me a while to respond because I was at a loss of words. Your honesty, your fragility, your disappointments, your discouragements all came through the several paragraphs you wrote in your blog. How could I respond, encourage, give hope, and try to put a smile on your face using words?
An idea popped into my mind: maybe having been told your tumour shrank in Ottawa was some kind of providence, because all this time, your energy was more positive instead of worrying about it until you met with the experts. I don’t know…
I read you want to stop smoking and do yoga. I smoked for many years and really the first step before stopping is to admit we are powerless over cigarettes and really hand it over to a higher power of some kind. And then try to stop, and if you start again, don’t hit yourself on the head, just plan to stop again. I did that a couple of times until it really worked. Some people stop once, and then that’s it for the rest of their lives.
Yoga is very good. What has helped me this last year is doing meditation. I always thought I could not do it until I joined a meditation class, or listen to CDs or DVDs. For me, meditation is a lot on focusing on my breathing and doing different breath works. It puts you in such a calm state and I have discovered a part of myself I never knew. Meditation grounds me to the earth and aligns my mental, physical, and spiritual state.
I hope you are feeling better emotionally. You are so precious! Xoxo
Anne-Rachel

Anne-Rachel said...

Hi Priscilla,
It took me a while to respond because I was at a loss of words. Your honesty, your fragility, your disappointments, your discouragements all came through the several paragraphs you wrote in your blog. How could I respond, encourage, give hope, and try to put a smile on your face using words?
An idea popped into my mind: maybe having been told your tumour shrank in Ottawa was some kind of providence, because all this time, your energy was more positive instead of worrying about it until you met with the experts. I don’t know…
I read you want to stop smoking and do yoga. I smoked for many years and really the first step before stopping is to admit we are powerless over cigarettes and really hand it over to a higher power of some kind. And then try to stop, and if you start again, don’t hit yourself on the head, just plan to stop again. I did that a couple of times until it really worked. Some people stop once, and then that’s it for the rest of their lives.
Yoga is very good. What has helped me this last year is doing meditation. I always thought I could not do it until I joined a meditation class, or listen to CDs or DVDs. For me, meditation is a lot on focusing on my breathing and doing different breath works. It puts you in such a calm state and I have discovered a part of myself I never knew. Meditation grounds me to the earth and aligns my mental, physical, and spiritual state.
I hope you are feeling better emotionally. You are so precious! Xoxo
Anne-Rachel

Hedy King said...

Stand strong, Priscilla. I'm praying you met your goal to stop smoking, such a difficult task. But a wonderful goal and a step to regaining your health. Meditation and yoga are great tools too. Stress is released thru both these and my husband has even used acupuncture with his lung/bone cancer. Now is not the time to rule out any alternative hope. I keep check on your blog, as well as Sue's,for updates on your progress. Sue was so good to answer some of my questions earlier this month. Day by day, Lady, that is the only way we can progress. Keeping you in our prayers.

Little Home In The Country said...

Priscilla - I quit smoking 24 years ago and although it was one of the hardest things I've ever done, it was SO worth it! YOU CAN DO IT!!!!!!!!!!!!!!! I think of you often and I am sending you hugs and love across the miles... XO