My Blog

It has been roughly 16 weeks or 4 months since my diagnosis. Since then a lot has happened. I have had lots of visits with the Oncologists and many trips to the hospital for various tests and appointments.

The most exciting news is that my first Post Radiation MRI scan came back with no sign of regrowth. Both Oncologists were sure that the tumor would have grown back. They say it is considered a small win but I think it is a huge win. It means that I was able to resume treatment without undergoing brain surgery again. Whew!!!

My Chemo Oncologist did however change my protocol and decided to pull out the, "Big Guns" called "ICE" It stands for Isofamide, Carbuplatin and Entopside which are all platinum based Chemo's.  I was originally shocked as this was the first time I had heard about it. Basically, she felt that this was the only real chance I have of putting the cancer into sleep mode for a while. They do not like to use the word remission as  it can make the patient too hopeful???? It requires hospitalization for a week every three weeks. It is 24 hour transfusions that go night and day. It is not pleasant but it is not meant to be.

My first cycle of ICE went smoothly and I was out by the evening of the third day. They originally put me into a beautiful private room overlooking the harbor bridge. It was a stunning view. By 6 pm that night I was told that there was an infectious patient that needed my room. I was then transferred into a ward with three elderly men. All of whom had advanced Cancers. One man was going to Palliative care. It was very hard to stay positive during these three days. However, not one to feel sorry for myself, I meditated and had lots of visitors to cheer me up. By the second day I was feeling fine. In fact I was thrilled that I was not feeling sick. Looking around I quickly realized that there is always someone who is worse off than you.

 Barry had to give me a shot after I got home to boost my white blood cells. He was so brave and did it with ease. It really stung .  I was so happy to be home with the boys and noticed that they hardly seemed to miss me this time around. I guess all of our planning had paid off.

With the change in protocol we decided to ask Barry's parents to come and stay with us to lend a helping hand. Barry's Mom arrives on July 24th and everyone is looking forward to seeing her especially the boys. Barry's Dad will follow shortly in Sept. I have just received news that one of my sisters are coming out in August and then more family  to follow in the following months. We have so much to look forward to.

 I just got out of the hospital from completing my second cycle of ICE. I was lucky enough to get a private room the whole time. Makes a huge difference. Unfortunately, I was quite affected by the side effects this time. Very sick for three days. Partly this was my own fault as I agreed to a faster infusion to get me out earlier. Plus they increased my dosage this time around. I Will not make the same mistake next time. I won't be so impatient.

 Jack our middle child was heartbroken when he saw my head bald. He covered his eyes and clung on to my leg saying, "Mummy I want your long pretty hair back, I feel really sad." My heart broke..... I told him Santa would give me some hair for Xmas maybe. He then cast a spell on me and turned me into a stone. Thinking he was playing a game, I said what did you turn me into a stone for. "He said because stones don't die". I was impressed by his ability to verbalize his fear but was not prepared for it. I had to fight back the tears and tell him that just because I was sick it did not mean that I was going to die. I was careful not to promise that I would not. That was incredibly hard......

This past Sat while taking Declan for a walk along the beachfront, I took a focal seizure in the right part of my face. It is now Monday and the feeling still has not returned to normal. I am about to go into the hospital for a series of tests to check for infection in the brain. I guess this is going to be an ongoing part of managing this disease. So much can go wrong even if you are doing all the right things. Still I will not let it bring me down.

My next MRI is booked for July 30th and I am due to go back into hospital on August 3rd. I have to say that I am in good spirits and it has to do with everyone's incredible support. Barry and I are completely overwhelmed by it all. There are complete strangers that I have never met who have so generously given money and beautiful words of encouragement. It certainly restores your faith in humanity...

Until next time, thank you for all your support and kindness it has made a big difference.

Still fighting....Love Audrey xox

 

 Oct/09
 
 It has been 6 months since my diagnosis and so much has happened. I guess that would be one of the reasons why I feel like a totally different person. Living day by day, week by week is a new philosophy for me. One that is taking time getting getting used to. My September MRI was clear. My Oncologist said that she plans to keep me on Chemo indefinitely. If she takes me off of it she thinks the tumour will come right back. The trick will be to get my bone marrow working again. My bloods remain dangerously low and to date have not recovered like they should. I have also had a couple of more minor seizures. My seizure medication has once more been increased to help with this. I find myself dreading going in and out of the hospital now. It is so upsetting for the kids. We seem to take 10 steps forward and take 20 back. Still I am grateful that I remain well enough to do most things.
 
We spent a weekend away at a friends cottage in Kangaroo Valley which was on their farm. It was just what we needed and the kids had a ball looking at cows and playing outside all day and only coming inside when it was time to eat. Thank you to our beautiful friends for inviting us down.
 
My sister Joan came to visit for three weeks from Canada. It was great to see her and to spend time together. Made me a bit homesick for family when she left.
 
 My husband Barry and our dear friend Vern rode in the 24 hour mountain bike relay in Canberra. The Campari Crazy's Team with Dean Gale and company  also rode and both teams raised money for Audrey's wish. Thank you to everyone as I know it was physically challenging.
 
The cooking classes at St Mary's were a lot of fun and the kids really seem to be enjoying it. I love  listening to them laugh. Great medicine for the soul.
 
I decided to host a Halloween party for the kids. We ended up with half the neighbourhood but the kids had lots of fun looking at all the  spooky decorations in the yard, bobbing for apples and trick or treating around the neighbourhood.
 
At this point I am on Oral Chemo one week on and one week off. My bloods remain low but I am relatively healthy so I cannot complain.