Thursday, February 4, 2010

February 4, 2010

It’s been a while since I wrote in the blog. I am coming out a tough time. Yes the news is great and the road to recovery is very positive, so why do I feel like crap. The last while has been perhaps some of the toughest times.

I still cannot eat anything solid and careful with most other things. My mouth is dryer than ever, making breathing and eating very difficult. I am told it is just part of the process and dealing with the scaring. I also developed a bump on the side of my head (which we are monitoring). They believe it is not serious and a result of many things.

I am also very sore physically as my body structure is still readjusting and now there is pain in my hips and shoulders as well as my neck.

I am also experiencing some hormonal changes (at least that is what we think it is) I just went for some blood test. I wake up 5 or more times a night soaked from head to toe. It does not do a lot for my energy level either. My temperature during the day is usually on the side of being cold but something changes throughout the night, yet I am not boiling. I have pulled out some herbs again, crushing them to swallow.

So that is on the physical side and I am managing to keep my spirits high and have had the opportunity to go out with a couple of girlfriends and share good books, movies and talks.

There are moments where I do get discourage but try not to stay there too long. Our family has seen quite a few movies, Richard and I have made it a point to attempt to go out Tuesdays while Julian is at cadets and then on Sunday we all went to see Avatar. Some great talent out there for us, thank you.

Recently I was out with my girlfriend Sandra to go bra hunting. I say that because in the past it was a hunt. Well the gift as we walked into the store was the bra rep was there and helped fit me and came up with great suggestions. I am now two sizes and a number of inches smaller. I feel like I am in my teens again. (that is not a bad thing – I am actually enjoying that part). Now to get my energy level back as a teen would be cool.

Hold that thought with me and we could enjoy some great fun!

Thursday, January 14, 2010

Richard's 59th birthdays
Ann's 53rd birthday



Christmas at Vera's - some of the youth



part of the gang at Christmas at Vera's
















January 14, 2010
I met with my doctor again yesterday to get an update of where things are at. The CT scan came out well just showing some bone deterioration on the palette, but I was assured that will restore itself and the tumor is no longer there. There is some build up of scaring and still sensitive, tender and very dry.

I also had a nose examination (microscope with a long tube – not the most pleasant thing you want done) and it was clear of any tumor, just some mucus build up and then further examination of the hole in my neck where the tracheotomy tube was is still healing. It may take another 3 -4 weeks. I was told there is a 50% chance it might not do it on its own and if not, I would have to go for a procedure to work with the skin inside and stitch.

I have gained around 5 pounds, now weighing at about 110 lbs. The doctor examines by hand my neck and he said it felt really good that the lumps seem to have gone. The biopsy that was done on my neck unfortunately has to be redone as it did not get the tissues they wanted to examine. (Another unpleasant thing to have done, taking 3 needles samples). I again go back in April. I am still on the feeding tube and there is some sensitivity around the tube and stomach, so another swap was taken to determine if there is infection.

I still suffer greatly from stilting my neck which I understand was a way of protecting the neck. Again, I was told I have to rebuild those muscles and straighten my neck. I am doing constant stretches and yoga to help relieve and restore the area along with a great chiropractor.

All and all, I am pleased with the results and feel very relieved. I still am recuperating and find myself impatient wanting to have my full mobility back, more energy and be able to eat again. But this again is taking some time and respecting the healing cycle.

I re-read bits of my blog and an article of someone else’s journey that was similar to mine that a friend gave me from the Globe & Mail in November and think, “oh my gosh, I went through that, I am grateful that is over”. I wrote the individual who had the article who expressed running a very successful business in Vancouver and being on all kinds of committees and then discovering a thyroid tumor and having aggressive treatment as well and almost losing her business. She responded with, “it like being in hell and back.”

I put some pictures in the blog from Christmas and of Ace – who has gone through a massive visual change. During New Years we had him stay with a friend and the dogs played in the field and got burrs caught in their fur. Ace was quite a mess and uncomfortable, so we had to get him completely shaved to restore his fur. He looks like a different dog.














Monday, January 11, 2010

January 10, 2010
Christmas and the holiday season has been great. There was something very special and important about it this year. I really wanted to be with my relatives and particularly my siblings. We drove along the 401 towards Morrisburg, with light snow falling and seeing the snow covering the hills along the country side, and either listening to Sting, a winter musical or a cd called a stroke of insight (about a woman who recuperates from a stroke). Somehow even the silence was so nice. Richard had set me up on the feeding pump in the car so I was getting my 5 tins of nutren in. Julian entertained himself with his DS games and would also practice singing as he got a CD with a special song he enjoyed. Being in the car with was as nice as being with the company. Maybe because I wasn’t driving, I found it so relaxing and loved seeing the country side.

I enjoyed the company at my cousins and watched as everyone ate fabulous meals. I managed to get a bite of an egg dish in and some Bailys and milk. Boxing day I felt a discomfort where my feeding tube enters my stomach, so rather than chance it, we went to the Cornwall hospital (waiting for 3 hours) and got a antibiotic and I re-bandaged it myself and it seem to be a lot more comfortable. So we headed to my sister’s place in Rawdon (an hour north of Montreal).

When I first arrived, I felt very emotional. The impact of knowing I was there and seeing everyone. I was recuperating from the aggressive radiation and chemo treatments and was feeling quite fragile as I moved around. I was also connected again with the pump inserted into the feeding tube in my stomach. Just weeks earlier I was constantly nauseous, but now that had passed and on to the next steps of healing. A fabulous dinner again was arranged, this time 18 of us together as I really could not eat anything but applesauce. I don’t know if I mentioned it, but I need to put 5 tins of this nutren in my system in order to get the calories I need. 1 tin takes close to 2 hours so you could image most of my day is on the pump. We later did some fun Christmas gift exchanges and then I was off to bed for a deep sleep.

We got to spend a little more time in Montreal both at Vera’s and Tony’s (my brother’s place) where I celebrated my 53rd birthday on the 28th.
Back home for a couple of days celebrating this time Richard’s birthday on the 30th, then we went to Thornbury for New Years Day and another overnight stay. This time connecting with my in-laws and attempting a walk in a very snowing and cold area.

Being back at home now as I settle in for January. I got in a couple of yoga classes at Wellspring and went for a series of follow up test, including a biopsy that was 3 needles in the neck area and CT scan and dental examination. Some good news after the dental examination. My teeth are looking great and there is salivary building. I have a follow up meeting with my doctor on the 13th to get the results of the other medical test and see where we are in the healing stage.

I am seeing some healthy changes and able to do a bit more. Emotionally, I feel overall good, grateful to be alive and appreciative of all the support and experiences of life. Then there are other moments where I think how much longer do I have to put up with not being able to eat, or feeling tired and sore. There are times, where I just crash and have to sleep or just rest. I am also still nursing the hole in the neck, hoping to see it close sometime soon. The impact on my neck has been very difficult as I am constantly stilting it and the muscles have become very tender. I crave all kinds of food, but when I experiment eating, it just doesn’t work and stings in the mouth. So right now it is still the tins of nutren and a little yogurt, applesauce, some soups and scrabble eggs. My tongue is still tender and very dry. The other surprise is I am still loosing lots of hair even at this stage. I thought that would have happened sooner and be done with. On an up note, my nails are very healthy so that must be a good sign.

Monday, December 21, 2009

December 19, 2009

Another big shift! A true celebration today. I am much warmer – literally. I have been constantly cold with the loss of 20 lbs., and not eating solids it is hard to stay warm in these temperatures. Joan (my sister) mentioned getting microfibre long johns sets. It worked, much warmer. What every person needs is someone who listens and comes up with ideas. I started eating little bits in the last two days. I had applesauce and a small protein drink. That is a huge step for me. It’s coming along.

I went to Knightsbridge Christmas luncheon on Wednesday to say hi to all the people I worked with. It was great to see everyone and at first I felt very nervous. How would everyone react as I have changed so much? With the weight loss and distorted mouth, the bandage around the neck and head tilted over and my voice going in and out? After hugs, I forgot all about those fear thoughts and just enjoyed hanging out. They were just delighted to see me again and encouraging.

I mentioned to someone I might pay for this the next day in recovery. Well I must watch my words, because that night my feeding tube got blocked and we could not get any liquids in at all. By the next morning nothing changed so we rushed to Princess Margaret Hospital. I spent the evening not being able to access the liquid food so come the morning I was quite weak. They flushed it out with a soda compound and reassured me it isn’t the first time. They also spent time with the hole in my neck and re-bandaged it. I had a heart to heart talk with two of the people on my team (both head nurses) who encouraged me and put some realistic timeframes in my healing process as well what to expect over the next while, including the trip to Montreal for Christmas.

The message was about being gentle, slow and patience. This is not just a day surgery and then you're back on your feet. I got a little shaken up and discouraged but grateful for the truth and reminders. Still stung.When I returned home I reached out to a few angels to continue filling my heart and inspiration.


This quote was sent to me among others and I thought was so appropriate.
You must be at the end of your rope. I felt a tug.~Author Unknown


On that note, it's time to relax and enjoy the Christmas holiday time. If you are reading this before, I do want to wish you a great Christmas and thanks for reading this.

It is with the hope that if you know someone who is experiencing something similar I hope I have offered some words of insight from my experiences.

Sunday, December 13, 2009

December 13, 2009

Already 11 days have gone by. Ok an update. It is Sunday morning close to noon. Julian has had a friend sleep over and there is some yelling and screaming between Dad and Julian. It is very hard for me to speak, however I am jumping in and saying no, he cannot talk to you like that or we are driving the friend home now. I am compelled to speak as I cannot stand the disrespect. While I am writing this in my office I am hearing directions being given out and follow through with resistance. So I jump in again.
Ok so this is what it is like to write while having a family life too. You can take some time off work to heal, but you really cannot take time off from parenthood. It doesn’t stop.
I am looking forward to Christmas. We settled on going to Morrisburg (Upper Canada Village) on route to Montreal, to spend it with Sandy (my cousin) and her family which is always good for many laughs then to Vera’s (my sister) in Rawdon to join the rest of my siblings then back to Tony’s place in Greenfield Park and then back home.

Christmas time has a wonderful warm feeling inside me and I so look forward to being with everyone. It is usually lighthearted. I just want to sit close to everyone and tell them how much I appreciate being with them and alive. Yes it has been hard and sometimes very scary. I wake up and my throat is so dry I cannot open my mouth and breathing is strained. I rinse it with baking soda that starts a gagging reaction, and then I pull out a bowl in case I vomit again. I wonder how much longer will this go on? Will it get better or worse? I finished radiation treatment on November 5th and it seems like it has been like this since then. Over a month to some it probably is not that long, but for me it does feel long. On another note, the trache tube is still out and the skin seems to be looking good around the neck. The hole is half healed. I clean the bandage regularly making sure I don’t blister the skin around it, so I am gentle around the delicate areas. They did tell me it may take awhile as the radiation made the whole area very sensitive.

Today I managed to sip some flat ginger ale with melted ice cubes and it went down. I mention these details because it seems to be an exact science of ingredients. However even at that, some days it doesn’t work and my mouth feels like it just went on fire.

I went to a funeral yesterday and earlier in the week attended a wake. December always seems to be a month of transitions. I seem to have a knowing that things will turn around for me and it is not my turn. Although difficult I know I will heal.
Yesterday’s service was very special. It was a former board president of our church. I didn’t know him well, but certainly after hearing many stories yesterday, he was quite a man. It was really a celebration of his life, who he was and how much he meant to so many people. It appeared he did many things in his life time and left an impact. He also had addictions, however made changes and then helped others change their life as well. There was a sadness but at the same time, many of us walked away reinforcing the message about how important it is to live life fully.

Wednesday, December 2, 2009









































































































December 2, 2009

I was reviewing the blog and I made reference to the full moon on October 4, 2009 and this evening is another full moon. Comforting to know that there is a consistent mystery out there. In a strange way there is comfort there.

So much has taken place and I am still recovery from the treatments and all the apparatus. I have still not been able to eat or drink (now I have had the odd sips of water or bubbly. Sometimes it works and then other times I open a place up to vomit, which seems to have happened a lot over the last couple of days. I am told my stomach just has to get use to things. It seems that is taking a while to do that.
I went for a CT scan and meeting with the team on Wednesday to get further results and suggestions. This calls on a lot more patience as there has not been any change on the tongue and much discomfort. Using medication helps with the pain, but certainly creates a day of slow movement and lots of sleep.

I had a great weekend with Joan and Vera. Many laughs and tender moments with heartfelt joy. It was fun to have that family around and get some extra care. The three of us got to spend some alone time together, slept at Dave’s place (Joan’s friend) who loaned us space for one night. We each got a king size bed with silk sheets, what a treat.

I have attached more pictures. We created a ritual to burn the mask used for radiation. It was a lovely night and the fire was extremely hot so it got to burn well. Thank you Eddie. We added prayers and gratitude and Vera said this was our winter solstice saying goodbye to what we did not want and hello to what we want. Richard and I have done many solstice ceremonies over the years and I felt incredible love and awareness to have my siblings involved and Vera stepping up to add to the ceremony. Different generations there and we are role modeling to different levels. From a baby, 12 year old, 25 year old and 28 year old.

Kathy Tiovanen the minister from Erin Mills United Church (EMUC) came over to chat. We arrived at the conclusion some things are left to be in mystery or they end up in the same way they were created. Let go and let god. We spoke of that in reference to global warming and saw how similar it is to healing a major illness. One can spend days and hours searching for the why (where I go from time to time) and not be fruitful but more depressed. Better to accept what is and high priority of getting well.

A couple of cousins came by on Friday from Cornwall and Kingston. We had some good laughs and teasing. I was thinking we can do that because we know we can get away with it knowing the intent is in the spirit of fun.