December 2008

I guess you've heard how cold it is has been here in Vantown. I have really become acclimatized to our warmer weather and it's taking a bit to adjust to the cold . I'm a little nervous to go out walking because of my poor depth perception. Don't want to fall on the ice.

I had some good news last month. The mass behind my eye has shrunk considerably, so yeah! The downside is that my eyesight in that eye most likely won't return because of the effects of the radiation. I'm just grateful that the mass has shrunk. I can adjust to having only one eye.
I have another bronchoscophy to check and see if there is any blockage on my right bronchial tube. If so, they will use a tiny radiation wire and blast away any cancer cells there to make my breathing easier. I'm a little nervous about it but I've had the procedure before and it is quite tolerable. Wish me luck.

Snowing in Vancouver 2008

The news is good

Well, I got the results back from my CT scan and all is good. The cancer is not spreading, tumour is shrinking so the chemo is working. What can I say but YAHOO!!!

Just started my third cyle of chemo........and this time I'm getting a boost of energy from the steroids so I can get some Xmas stuff done, well maybe.

Thank you Elaine, Liz, Doug, my Liz, Casey, Erin, Steph and Will for celebrating the news with us. I am such a lucky person .

Thanks one and all for all those positive thoughts. They're working.

Life is wonderful, enjoy and savour.

Love, Alayne

Hoppy, Alayne, Gabby and Taylor

November 17, 2008

It has taken me quite a while to find the time and energy to update this blog. There seems to be endless doctors appointments, treatments and tests and application forms to complete. Not the greatest way to spend time but I know it will make me healthier in the long term.

I am now halfway through my treatments. I start the third of a four part treatment cycle this Thursday. There is a possibility that these chemo drugs may not be working and that the cancer may be spreading. My oncologist is very confident that if that is the case she has other drugs that may be more effective. She had found what she thought were new spots on my right lung and wasn't sure if it was pneumonia or spreading cancer. So I was prescribed a round of antibiotics to see if that would make a difference. I also had a CT scan last week to check on the new spots and will get the results on Wednesday. I'm keeping my fingers crossed that it was pneumonia and not spreading cancer.

The treatments haven't been too bad. I find myself getting very fatigued for about two weeks. The nausea isn't what I expected. There may be about five days where my stomach churns and rumbles. From what I hear from other folks' experiences I have it pretty good. My breathing has gotten somewhat worse and I have oxygen at my disposable to use as needed. To date I haven't used it very much since it doesn't really seem to help. One of the goals of the chemo is to improve my breathing so I hope there is a change soon.

With the limited breathing capacity and fatigue I find that I have lost a lot of independence and mobility. I find myself getting quite frustrated when I can't do the things that I want to do like clean out a closet or run to the store to get something.

The most frustrating thing I have done so far is apply for CPP Disability benefits. It is a requirement of my long term disability benefits to apply for whatever CPP benefits I may be entitled to. Of course most of what I would be entitled to will be clawed back my my insurance company. So for about $200 a month that I may get on top of my LTD, I spent about two weeks gathering information and filling out forms. I couldn't believe the kind of information requested. For example, I had to list every doctor I saw in the last two years, their speciality, address, telephone #, what I saw them for and the dates I saw them. Now I had been trying to find out what was wrong with me for about two years before I was finally diagnosed so consequently I saw a ton a specialists. I had most of the appointments written in my day timer so that made the task a bit easier for me but it was still a challenge and I even thought about getting an advocate to assist me. However, I consider myself a fairly highly functioning individual and have had experience in my work life assisting people to do these type of applications so I would feel guilty using an advocate when there are so many other folks whose needs are much greater than mine. It was the fatigue mostly that made filling out these forms so onerous. Filling out an application that is 21 pages before the doctors portion is exhausting especially when you are ill. I can't help but wonder how difficult it must be for others who don't have the skills, energy and time to complete these applications. Many don't know how to navigate the system or how to access the information required and there could also be language barriers as well. I find it amazing the hoops that one has to jump through to collect from a plan that we have contributed to our entire working life. Surely a medical report from your doctor should suffice to qualify for benefits. Something needs to change here.

Since I last posted I have had some really wonderful times too. A dear friend visited me from Nova Scotia and I was thrilled to spend some time with her. Visiting with friends is a real pleasure for me, it lifts my spirits and energises me. Friends are the greatest gifts and if you're around, please give me call and see if I'm available for a visit. If I don't have the energy to answer the phone, leave a message and I'll get back to you when the energy level is higher. I now have a webcam so if you do too, let me know and we can have a virtual visit.

We had a lovely Thanksgiving and Liz, my vegetarian daughter, cooked the turkey dinner. This was the first time in 43 years that I didn't cook the Thanksgiving beast.

I am really looking forward to Christmas and Amber's arrival. I expect the season to be a bit more low key and cosy this year. I will have just finished my last chemo and expect my energy levels to be quite low but everything will be quite lovely as long as I have family and friends around.

I feel so good today and I believe it must be because of all the positive thoughts all of you are sending my way. I do appreciate all the emails, phone calls and letters. I think of all of you often and am thrilled when I can actually give you hugs.

Thanks for all of your patience. Hugs and cheers and positive thoughts. I'll let you know the results of the CT scan on Thursday.

Alayne

October 9, 2008

Amber and her childhood friends

I know some of you expected me to post every day but if I did I think you would have found it very boring. I thought about sharing my daily feelings and then decided maybe not. I have had some down days but mostly good ones. Also while Amber was here I focused my energy on my family. It was such a pleasure to have her here and I'm looking forward to her Xmas visit too.

I sought out a second opinion for my cancer treatment. Boy, was it a shock to find out how much it would cost. He was going to treat very aggressively with drugs that wouldn't be covered by our provincial medical plan. I had to seek prior approval from my work plan and to date still haven't heard back. Needless to say the costs were prohibitive for our income level. One medication would have cost $86/day and I would have to be on it all my life if it worked for me. Another chemo drug would have cost $30,000 a month or $1000/day. Although he gave us some hope he could relieve my symptoms fairly quickly we felt that there were too many unanswered questions (he spent 15 minutes with us), too far to travel for treatment and it was taking too long for paperwork to be processed. I just wanted to get on with it. The good news is that some of drugs will be available to me if needed at the Cancer Agency at no cost. So I think it was good exercise to get the second opinion because I learned so much in the process and felt I had more control over and information about my treatment options.

I started chemo this past Monday. It was originally scheduled to start on Oct 22 but since my breathing got worse I was wait listed to start earlier.

Apprehension and nervousness accompanied me to the Cancer Clinic for my first treatment. It wasn't nearly as bad as I had anticipated. When we arrived home after the treatment Hoppy noticed that I was quite energetic. As a matter of fact for the next couple of days I felt better in terms of energy and breathing than I had for ages. I thought, "Oh my, chemo sure acts quickly!" I did so much. Made bread, apple sauce, organized closets, went shopping for clothes (lost a lot of weight) and groceries, organized binders and still had energy to burn. The day before my chemo I couldn't walk 1/2 block without having to turn back home so this was like heaven to me. I was told to expect that the anti-nausea medication could disturb my sleep but I wasn't told that the steroids would make me a speed freak. I got that information from a cancer survivor friend. So on his advice I'm taking advantage of the energy while I can to do the things that I enjoy doing.

So far no nausea and my appetite is good. My treatments should be finished by mid- December. It is a 21 day cycle for four months. Day 1 - 2 drugs, Day 8 - 1 drug, Day 21 check in with Dr.

Thanksgiving is this weekend and it will be the first time that I haven't cooked turkey dinner since I was 18 years old. It will be fun to watch and enjoy my family cooking together.

Wishing all of you a wonderful Thanksgiving. I feel all of the positive energy you are sending my way. I am so fortunate to have such fabulous friends and I cherish each and everyone of you and wish all of you were closer so that I could hug you.

PS Wish I were in Caper Breaton for the Celtic Colours!! Next year.

Signing off for now,

Alayne