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  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

Priscilla and family