October 30ish - see how much it has been removed

The lump on the throat which has now shrunk - this was back in August

End of August - see the size that was inside my mouth.

Julian and Ace out for a cadet Halloween celebration

Flowers in our backyard - Julian planted the ones against the fence.

Practice for that babysiting course

Jacob and Ann - nothing like a baby to bring out heart!

Saturday, October 31, 2009 – HALLOWEEN

I had two great nights of sleep and the feeding tube worked well. We are trying it slower and doing some while I sleep. It seems to be working better. It was a week of experimenting with what the body could handle. Earlier this week I would get 4 tins but then vomit and feel terrible. So the last two days we slowed it down and some of the nausea has stopped. I also meet with the surgeon this week to discuss removing the trach tube. Not going to happen. He would like to see it in for another potentially 4-6 weeks. Ok I will stay open to that if it truly helps. I had a nurse say it is going by very fast. I said that has not been my experience. In fact it has been one of the slowest time; being aware of every moment and experience with the body. Joan is coming with me again on Monday as it will be the last chemo treatment and I stay one last night and then radiation the rest of the week.

Again some great visits, starting with my sister, my niece and her new son. I had a few sets of visits from friends at Knightsbridge (the place I do a lot of work) as well they have been providing meals from the restaurant below for Richard and Julian. I put some pictures up on Jacob the newest family member. Nothing like babies to bring so much joy.

The chiropractor came over for 30 minutes not necessarily to do regular treatment but something else that helped release some of the muscle tension. With the awkwardness of sleeping with my head up propped on pillows and weight loss – the spine has taken some ware and tare.

Richard has been mentioning it for the last weeks to put some of the pictures of tumor on the blog at different stages. Ok, here goes.

Happy Halloween!!! You could just imagine what I could go as.

Wednesday, October 28, 2009

Wow, I thought I would write sooner, but maintenance just got bigger. I thought I would have all this time for resting, reading, maybe drawing. NOT.

So much of the day is consumed with care. To give you an idea this is what today looked like and most days. I am up at 5:00 a.m. doing a salt solution cleaning the area around the neck and trach tube. Then I rinse my mouth with baking soda and water as it is now filled up with gobs of phlegm from the sleep. This is all to be expected from radiation and chemo. If you spoke to me in the last couple of days, you probably did most of the talking as now I am struggling to speak. (I know some people really like this idea – don’t worry it will come back and watch out). Then with a peroxide solution and brush I clean the trach tube out. I give myself a sponge bath and dress. I am ready to leave at 6:45 a.m. to Toronto for the 8:00 a.m. radiation apt., I then meet with one of the team doctors and we reviewed where things are at. I loss a little weight again so we look at ways to manage that nausea again. Yesterday without getting into the fine details I will let you know I was pretty close to the bowl most of the day. I had a nurse clean up the bandages; give me a saline solution around the neck to help with skin. The doctor reminded me this is the very tough time. I spoke to Vera (my sister) and we said that seems to be the message week by week. Good point. I then came home (it is around 11:30 ish) and immediately hooked up to the feeding tube – I now need to have 4 tins. Each tin takes 1 ½ to 2 hours. Usually I come home to a long nap as well. Before long it is 2:30 and Julian is home by 2:45 p.m. and I am starting my next gourmet dinner or should I say gourmet drink. (the further from the truth). I watch a little Oprah and finish off the drink. If I rush anything I pay for it later. (which I did). I see now we are all getting a little tired, keeping up but a little tired. I had some great care this week. Yesterday my girlfriend washed and conditioned my hair (this is the friend who works with clients with hair loss) , so really was gentle both with the products and touch. Richard got our local chiropractor to come and see me tomorrow night as my spine has been tender. YES. On Sunday, I had 3 healer friends do a series of treatments on me. So many angels out there. Earlier in the week I felt I hit my low and so together Richard and I did a prayer. Within minutes help came in so many ways. Nice reminder to move to a bigger source.

Wednesday, October 21, 2009

I met with the team of doctors today to review how things are going. Again the tumor is shrinking well. I now need to get some weight on as I lost another couple of pounds. The throat is changing and food is tasting terrible (as someone described it was like eating sawdust). I am now using the feeding machine which takes quite a bit of time, but I am determined. There is a lot more discomfort from the throat and constant discharge and the last two days have been a little more challenging to talk. My skin around the neck area has become quite sensitive and peeling. After this week, it will be two more weeks of radiation and one more chemo treatment. I understand the trach tube and feeding tube may be with me for another month after (we will see). I am glad I know the end of this is coming and parts of me are able to appreciate some sense of normal.

I woke up during the night wanting to share the experience I had in the surgery area receiving the feeding tube. It was special. I had to wait about 2 hours in the post operation area wondering if they forgot about me. At last they came and got me. The doctor introduced himself and by then I was a little anxious (needless to say). I told him and he was so real with me. He said he understood and did not sugar coat anything. He did not minimize my anxiousness and I felt heard. He gave me the facts, the risks and also said he does about 3 a day. He then teamed with two other people in the operation room who I also shared my nervousness with and they quickly gave me their attention. I find when I am like that it is better for me not to go just into task mode, I looked them in the eye and often ask to hold their hands for a couple of minutes and then I feel the human element. They worked together very well as a team and stayed close to me and explained what they were doing. I was awake during the procedure with some help with meds. Then after they delicately brought me into the recuperation area and brought extra warm blankets.

Tuesday, October 20, 2009

I am back home after another stay at Princess Margaret Hospital. I got the feeding tube put in yesterday. The evening was very tender and now glad to be back home. It is interesting I watch two night nurses as they come in after I call them and acted as if I am disturbing them. I threw up a couple of times and they give me a small bucket, give me gravol and then run out before I ask for anything else like a new gown. The day nurse is a lot more sensitive and immediately gets me refreshed and shows me the use of the feeding tube. My room mate in the hospital has been there for some time and dealing with all kinds of side effects. She smokes and goes out every ½ hour to have a smoke. They have told her she needs to stop but she insists it would create too much stress. The last couple of days it was more difficult to talk as my throat seems a little tender and things are still breaking up. I watch where I put my energy and prefer not to engage in conversations with people I don’t really want to. I am a little restless wanting to move on and yet the body has not yet caught up to that.

Saturday, October 17, 2009

Brutal – another week of this! Patience is not my strong point. I know I passed the half way point. I am feeling irritated. I woke up wanting to pull out the trach tube. I hate having something around my neck. My body is feeling so small and I am attempting to continue building strengths through eating and breathing. I now have agreed to go with the feeding tube Monday. (which I hear will provide the nutrition I need). I have lost my appetite and weight went down again, so going this route will help.
Again the week was full of support starting off with Joan (my sister) bringing me on Tuesday to PMH and hanging out with me while I had chemo. Then Bob and Pat bringing me back to their home in between two radiation treatments and giving me the comfort of napping in their sunny room in the afternoon after a walk in the beaches. Laura picked me up after and we experimented seeing the movie Home but I had to cut it short and say goodnight sooner than expected. Duncan drove again on Thursday sharing his pleasure of Celtic music. Allison drove on Friday, creating a great ride and finding a ¼ of the price parking spot on the street. Kelly also joined me this week and took me to Truly You to get a hair treatment from Heather.
Back home to a long nap and soaking the warmth with Richard, Julian and Ace. I am enjoying seeing Julian grow and he has had some special dates as well.
Another friend called on Friday and with sincere intention said she was very sad I had cancer. It scared me and I am finding it hard to shake it off. Up to now I have felt this was a transition and it would pass soon. Now I am feeling weak, shaken, and uncertain about what’s next. I tell myself to keep my eye on positive things and what I love. At the moment that is a little hard. The closest thing I keep in my heart is that I want to live.

Richard is tentatively planning a business trip to Palm Springs in December and suggested we go together. That feels really good. I want to go without the trach tube or feeding tube and feel my body in the warmer weather and enjoy new sites.

Richard and I did a couple of errands today and I feel so different being frail, not by usual bouncy self and aware of how much thinner I am. It is good for me to go out and to build that confidence again and reconnect with something greater than what appears!

Saturday, October 10, 2009

Wow, 6 more days have gone by and already the side effects are strong. It is good to have the weekend. No trips into Princess Margaret Hospital now until Tuesday.
Thursday night, I got to enjoy Gary’s 60th birthday party (a friend of many years who we shared a number of New Years party with his family and friends). I didn’t know that was going to be the last of eating solids for a while. The cake was worth it.

My tongue now is very raw, swollen and open sores, blisters as well the gums all around the teeth have become even more sensitive. I was given a medicated mouthwash to coat the mouth to allow for some eating without the sensitivity. So far that has not been helpful. I must admit I thought I had a couple more days before this stage. Now I see where the feeding tube will have to be done. My hair has also started to fall out in chunks, again a little faster than I expected. I have had 3 weeks of radiation and 4 more weeks to go and two more chemo treatments. The next one being Tuesday, where I stay in the hospital overnight again.

I am continuously blessed by the kindness of humanity. Spirit shows up! I could never do this alone, although some do, I know myself, and I do better with the community of family and friends. I feel the need for touch, gentleness, laughter and sometimes just talking through some of the waves of emotions. Sometimes during the day I go to the poor me place and then a story comes in from another who lost her husband or my neighbor’s dear friend whose daughter went through it and the family was told to gather as she might not make it. That was 2 years ago and she is doing really well today and is cancer free.

Here are some pictures – the trach tube (see how red the neck was) now it is so much better. The mask that is put on for each radiation treatment, picture of me with it snapped into place and ready to go.

Just to balance things, here is a picture of ACE – our 6 month old pup who Julian named and reminds me – “We will ace this”!

It does help me to compare this to renovations, sometimes it gets wild and tough, but we keep our heart on the desired outcome. As Julian wrote on my mirrow - Mom rocks!

Good to be Home

Sunday, October 4th,

God it is so good to be home. As I look outside and watch the 2nd evening of the full moon. How beautiful, powerful and mystical. It is beautiful, beauty, my guiding anchor. It speaks, “this is part of the mission, the journey, and it was all planned”. There are clouds displaying forms. I see a woman lying in a bed under the moon. I am told to “Rest now”The cloud formation is changing at such high speed, yet when I look I don’t see it even moving. When I take mind off it and do something else and come back the art has retaken. The great Artist in the sky. I am told again, “you are part of the collective, just keep writing” Time to turn over the responsibility part to God. She does a better job Wow, I am relishing in the care of support from people, feeling the warmth of people coming for visits, offerings, drives, cards, calls, emails. The conversations are deeper, we are not just socializing, we are saying, “hi, isn’t this great another opportunity to live, share and love.” You experience me with my phlegm hung low and dripping, speaking like darth vader and looking like Queen Victoria with a high collar bib.

On the weekend I got out quickly to buy some new pants as I have been using belts and wraps to hold the pants up. It really hit home, when the size 6 I was trying on was too big. I went from approximately size 10 or 12 to a size 4.

I am eating now and enjoying that a lot. I cannot remember when I gave myself so much food and freedom. Creams, cheeses, pates and on.... just enjoying it all. My mouth has become a lot more tender so everything made with intent of easy to swallow is making it interesting. Sounds weird but water is hard to have as it goes down too fast and no texture.

I also have had a male nurse come a few times. He is great; his name is Vadym and is Ukrainian. He has been so diligent in working with the sensitivity of the skins around the trach tube. The skin was very raw and painful and he helped find the right solution to protect it and it is slowly healing. I find it amazing and humbling these people come into my life.

While I was in the hospital the first few days, Joan (my sister) came every night. She brought such caring and love. She was there through my fear and not being able to breath. She would work all day in Meadowvale area, drive her car to the subway, spend a few hours with me and then drive all the way home to Terra Cotta in the fog. At the same time, she was cleaning out her home of many years to transfer to another house. I felt like a baby being brought into the world and she was going to be there for me. There is no other feeling, when we look at each other and know we are going to get through this.

Now we can look back and laugh as I was starting to tell stories from the medication waves that didn't make sense and I could witness myself doing that. Or after arriving and getting comfortable with her feet up with a book while I slept - only to be told when I woke up, Go Home Joan. She laughed and said I just got here and I am relaxing.

It was such a blessing when I called Joan on the weekend while in the hospital in one of those moments where I had enough. I said, "Joan no more, get me out of here", Joan gently said not a problem Ann, I will get change and get ready and pick you up. Somehow, knowing she heard me and willing to be there for me in my decision was enough to say ok, I can handle more. I just needed to know someone was at my side. Later when Vera and Tony arrived I was able to handle more.

On the Sunday that I was in the hospital, I had eaten very little and had no appetite at all as everything tasted like medicine. Vera had driven all the way from Terra Cotta and had made cream of wheat and put maple syrup in it. She kept saying it was so comforting to her as it reminded her of Dad and she knew I would love it. I had my nurse friend Cathy there who had just done Therapeutic Touch on me and I was about to drift off as I saw Vera's face with the desperate look of, please eat the cream of Wheat - I swear she would have forced feed me if it wasn't for Cathy saying - not to worry Ann will sleep now.

The next day Vera and Tony came again before heading back home to Montreal. Vera looked at me and said in a way I felt so loved. "Ann, I am not here for you, I am really here for me. I needed to be here. I could not stay home and worry. I wanted to be here." I know that feeling when you just have to jump in - be completely there. The moments are previous. Wow, I am so grateful for such a wonderful family.