Home coming and travelling again

Results of trial

By elaine gunn — Oct 18, 2014 7:53pm

This a tough update to write - re: the success of the immunology trial -- but I promised, so here it is.

Last week, I went to NIH for 1 month follow up, going through a battery of scans/tests, an unexpected trip to the emergency department to discover that I have Pericarditis after waking in the morning with crushing chest pain. I was in good time to make it to the clinic appointment with my Immunotherapy team.

Net: at least to some extent, the bad guys out-maneuvered the 300 M good guys.  The good guys may have had an impact, but not enough, and may continue to flourish, grow, and discourage the Cancer, but not hopeful.  We're looking at what other options are available at The Tom Baker 

I can't thank all of you enough for helping me stay the course and,   I'm striving really really hard to do exactly that now, and forever.
If I can return your generosity at all, maybe it's to pass on the philosophy that strikes many with life threatening disease -- i.e., if its not life-threatening, don't stress!!  Simply fix it if its fixable, live with it if its not.  Every moment of every day, cherish life, laughter, people, sunrises and sunsets, little caterpillars, funny children.  Please guys - don't wait until you or your loved ones get a life threatening illness to fully embrace how beautiful life is, and that which stresses you is, in all likelihood, the 'small stuff."

So I am back in Canmore now and open to some walking, resting and drinking tea!
Love from Elaine

Home coming !!!!!

By elaine gunn — Sep 22, 2014 7:40am

Improving day by day and last evening it was decided that I am good enough to go home !! I think they were tired of coming to my empty room, while I was out walking !!!!......just kidding.

So today I am donning my sparkling red shoes T shirt. KEEPING CLAM AND CLICKING MY HEELS !!! 

Looking forward to being reunited with my family and friends.

I have to return for two days in October for more scans and an assessment with the hopes that the good guys are making headway with the baddies.,

I would like to thank you for all your comments, good wishes and support.along this part of my journey. Most of the time it was the highlight of my day.

Well I shall see you soon. PS The kids are in for a big surprise

Travelling again

By elaine gunn — Nov 12, 2014 10:22pm

This is james writting for elaine. She is very tired after her procedure today and wished to update you all, so i offered to write for her.

The last two months have been really tough. The tumor in the esophagus started to grow when mum and dad were here back in september. I was fitted with a feeding tube which caused diarrhoea. I began getting weaker from that point on.
Friends from work have been very good at getting me out in the mornings for short walks to which i am very greatful and I usally meet other girlfriends at weekends for short activities and chats over tea. I am also greatful to friends and family who send emails and message me I am so lucky to have you all in my life.

My Oncologist gave me two options,
Option 1, two doses of radiation, 1 week apart in Abbotsford, 1hour flight away. Along with dilation of the area.
Option 2, have a stent placed in the esophagus. Which would rule out the option of radiation in the future.
Each treatment potentially gives me 2 to 3 months symptom control.

We chose option 1 and started last week. Swallowing has improved but my stomach is rejecting food.
I have been visited by the staff in community care, who have been giving me over night hydration. My energy levels are very low due to the lack of nutrition.
I had my second treatment today and we altered some medication to help with the stomach issue. We fly back tomorrow to see what next week brings.
I appoligies for the delay in responding. Best wishes, love Elaine

The past 3-4 weeks we have been working closely with my family doctor to get the right combination of medication that is most effective for me. By doing this it has improved many of my symptoms. The overnight hydration was stopped and now I have to get a litre of water, tea, juice etc in on top of the nutrition supplement drinks. So feeling stronger than last entry and still up for walks and tea.

Home coming !!!!!

By elaine gunn — Sep 22, 2014 7:40am

Improving day by day and last evening it was decided that I am good enough to go home !! I think they were tired of coming to my empty room, while I was out walking !!!!......just kidding.

So today I am donning my sparkling red shoes T shirt. KEEPING CLAM AND CLICKING MY HEELS !!! 

Looking forward to being reunited with my family and friends.

I have to return for two days in October for more scans and an assessment with the hopes that the good guys are making headway with the baddies.,

I would like to thank you for all your comments, good wishes and support.along this part of my journey. Most of the time it was the highlight of my day.

Well I shall see you soon. PS The kids are in for a big surprise

day 6-8

Day 6.

 Elaine looks a lot better than she did 2 days ago. Still not her normal self and slept a fair amount yesterday (day 5). Yesterday they found out that the bacteria that caused Elaines fever, its a bacteria usually found in the gut, but due to elaine having no immune system the bacteria leached into her blood stream.
Knowing the name means that they can focus the antibiotic type. They said that in laboratory mice, having a bacterial infection boosted the immune system. It has not been proven in humans yet. So lets hope its the same. 

This morning the Doctors stated that there are now signs that elaine bone marrow is starting to work and over the next few days she should start to feel a little better
The last two days have been hard, We are just waiting for her immune system to steadily rise.

 The mornings are cooling down now. We have been here for over a month and the leaves have started to change. Elaine and i decided to go out for a walk today. A refreshing breeze bringing the scent of freshly cut grass our way, we walked around the grounds with the sounds of fallen leaves crackling under our feet. The sun shining and warming our faces. It feels so good to be out. We returned to the court yard and not wishing to go inside, rested on a bench listening to the birds and insects. The NIH shuts down at the weekend and the hustle and bustle becomes a trickle. A time when the mobile patients reclaim the common spaces. No doubt, we will be out for another walk soon.

Day 7 A bit more freedom

By elaine gunn — Sep 20, 2014 5:02pm

Road to recovery is always hard, especially when you are confined to the ward, but this morning is different.  I am no longer nutropenic. So yesterday we explored the grounds and took in the  fresh air. Wonderful! !!! And we enjoyed it so much that we did it again in the afternoon.

There comes a time in a girls life, where a change in hair do may be required, and for those of you that have known me for a long time, know that I have probably had the same hair style since I was 15, yes, way back in the 1980' s. Well over the last three days my hair has been pulling out every morning in the shower, becoming more and more distressing. I had been told that this would happen, but some how I was in denial, however did get prepared prior to coming, to Bethesda by purchasing a wig and a couple of scarves.So after waiting probably too long, I made the decision to go for the clippers that afternoon for my new hair do.

Today, again we walked outside, nausea  and appetite are still a struggle, but the doctors have started me on another drug to see if that will finally settle things down.

Day 8 Draft

By elaine gunn — Sep 20, 2014 5:03pm

The mornings are cooling down now. We have been here for over a month and the leaves have started to change. Elaine and i decided to go out for a walk today. A refreshing breeze bringing the scent of freshly cut grass our way, we walked around the grounds with the sounds of fallen leaves crackling under our feet. The sun shining and warming our faces. It feels so good to be out. We returned to the court yard and not wishing to go inside, rested on a bench listening to the birds and insects. The NIH shuts down at the weekend and the hustle and bustle becomes a trickle. A time when the mobile patients reclaim the common spaces. No doubt, we will be out again soon.