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.

Day Four, right on time

Day Four, right on time!!!

 Sep 16, 2014 6:26pm

Elaine had a restless night and felt lethargic in the morning, as the day unfolded she became more and more tied. Apparently typical for day 4.
The cells look like they are getting a second wind, right on time!! These special forces guys are high maintenance, apparently they need a clean up team and caterers to feed them!! the feeding and cleaning up, is causing a hormone release in elaines body. The hormone release is a natural reaction aimed at stimulating her own body to provide these caterers and cleaners and make up for the special forces guys inability to provide for themselves.
However, as I now know, this war comes with complications, spikes in temperature and Rigor's. All expected but Elaine's medical team still run antibiotics and anti fungal by IV. They also test the blood, run x-rays and administer other drugs to reduce the fever. This has lead to elaine sleeping for the whole afternoon and early evening.                                                 

By Joanne Attenborough — Sep 17, 2014 10:18am

Sounds like the medical team are right on top of everything as always, hugs To you both xxxx

 By Mary AITCHISON                                                                                                                                                  By Mary AITCHISON — Sep 17, 2014 10:01am                                                           

Auntie Margaret here visting Lenzie and reading your caringbridge sending you lots of love and I know you have the strength to get through this Days full of sunshine ahead.xxx.

               

                                                                                                                      

By Marilyn Ashmore — Sep 17, 2014 7:17am

Keep smiling and stay postive remember we love you loads xx

                                                                                                                                      

By Jeffrey Meads — Sep 17, 2014 2:37am

Stay strong Elaine and keep fighting, you're doing great! Love you xx

               

                                                                                                                     

By Laura Ashmore — Sep 17, 2014 2:10am

Keep fighting James and Elaine x
We love you xxx

By Shannon & Chad Cavanagh — Sep 16, 2014 11:15pm

Oh, Elaine you are doing so well.
Keep it up, we are so proud. Love you! xo

                                                                                                                                  

By aoife brogan — Sep 16, 2014 10:33pm

Go Elaine Go!
You are a mighty fighter:)

               

                                                                                                                      

By Wendy McGregor — Sep 16, 2014 9:51pm

Keep fighting Elaine. We are right there with you.xxx

               

                                                                                                             

By Amy Gagnon — Sep 16, 2014 8:57pm

Thinking of you both.

On The Up

On The Up

By elaine gunn — Sep 15, 2014 5:30pm

Feeling more human now, nausea is subsiding and my appetite is slowly returning.
I continue on IV antibiotics every 4 hours, to prevent infection in my Hickman line. Today I required  a blood transfusion. Other than that I am free from the pole.
Know that I am feeling more human and less foggy, I thought it would be an idea to recap on the journey so far. A friend received this from a 'Science Guy" had a really good analogy.
They have removed cells from the bone marrow by doing the stem cell harvest. The marrow is responsible for generating antibodies, then expose them to artificially created proteins "signatures" found only on the surface of her cancer cells so they are triggered to produce exceptionally high levels of antibodies to target and kill her cancer cells. Its a bit like showing a room full of special forces guys a picture of a baddie so they can then go forth, seek out and kill the baddies. There are all manner of challenges and complexities along the way, but we're basically manipulating our intrinsic immune system to get much better at recognising and then killing tumour cells.
Aldesleukin is basically synthetic interleukin 2( a cytokine) which boosts the production of other immune system cells (T lymphocytes and natural killer( NK) cells. It is given to improve the efficiency of the immune system once the special ops guys get to see a picture of the baddie.
So with my new 300million cells, aided with my boosted T lymphocytes and Natural killer cells and a support from amazing family, friends and community. This cancer has It's challenges ahead........with some prayers to God !!!!!

By Julie Young — Sep 16, 2014 8:15am

Hope those baddies are quick at packing as it sounds like it's time to ship out before the special ops seek them out-yay!!!
Think those losers have more than outstayed their welcome!
Stay positive Elaine, keep focussed-it really feels like you're on the home straight now xxxxx                                                  

                           By Joanne Attenborough — Sep 16, 2014 4:18am

Glad you have clever friends, great explanation, I am more your chitter chatter walking friend! Must be so nice to be free from the pole and have an appetite again. Xxxx                                                             

By Laura Ashmore — Sep 16, 2014 4:17am

Come on fighter cells! Do your business!                                                                                                                                   

By Paul Mowson — Sep 16, 2014 3:39am

So glad you are feeling a little better and getting your appetite back Elaine - and no pole! I'm sure those special forces guys are doing their stuff and are gonna kick some serious ass, all 300m of them! Sending lots of love and positivity xx

 

                                                     

By Laura Mackintosh — Sep 16, 2014 12:26am

Go special forces cells. You are always in my heart and mind xxx

                                                                                                                                  

By aoife brogan — Sep 15, 2014 11:27pm

I would walk five hundred miles
And I would walk five hundred more...
The proclaimers :-)
You are doing brilliant Elaine!

                                                                                                                                    

By Amy Gagnon — Sep 15, 2014 11:10pm

Thanks for that explanation Elaine! I'm glad you are starting to feel better. We think of you often and I can explain to my boys about the treatment you are getting. Being boys, I think they will love that analogy! Take care, sending positive thoughts your way!

 

By Lorraine Vincent — Sep 15, 2014 8:55pm

Wow...you have been through a lot! Glad you are starting to feel a little better. So glad James could be there with you. Stay strong and positive                                                                                                                        

By Robbie Berendt — Sep 15, 2014 8:03pm

Sounding good. I really like the simplified explanation, it all makes sense. Keep up the good work

Aldesleukin

Aldesleukin

 Sep 14, 2014 7:14pm

Elaine received her 5th dose of aldesleukin last night at 11 pm she started to get some side affects throughout the night and in the early hours of the morning. The doctors were very satisfied that she had received enough aldesleukin to kick start the cells and took her off the drug. Elaine is still confined to the ward and will be for the next few days due to her neutropenia. Her appetite is still low and will be for a few days. We now have to monitor her for signs of infection and ensure that her blood work keeps improving. The side effects settled down as the days events unfolded. She managed a few walks around the ward, while friends in Canmore ran the Terry Fox run for Elaine. Amazing friends, it brought tears to Elaine's eyes looking at all the photos coming in by email and social media. she feels very loved and supported.                                                  

By Joanne Attenborough — Sep 15, 2014 12:00pm

Paul ran the terry fox for you yesterday and I ran round the streets of Arnold this morning for you :-) xxx                                                             

By Linda Bell — Sep 15, 2014 5:25am

Awww! She is doing brilliantly!! Huge hugs from all of us. X

                                                   

By Barbara Jungmann — Sep 14, 2014 8:24pm

Elaine...I know you are brave...I know you are tough...remember we love you! We are thinking of you!! Although I didn't do the Terry Fox Run today I went up Lady Mac and could hear the loud speakers announcing the race. It was great! I thought of your kids. Remember... you are on your on race right now...a very very important one..AND remember we are lining you pathway cheering you on!!!! It takes the Sun and the Rain to make a Rainbow! You are having some rain...we are your rain gear! We love you and are SOOOOO cheering you on! Barb                                                                                                                     

By Laura Mackintosh — Sep 15, 2014 10:27am  

Team Mack wish you all the very best Lainey and James too. Stay thrawn xxxx                         

My 300 Million army cells

                               

                   

After a good night sleep and well hydrated, I am officially neutropenic. I then received some antibiotics and ant acid meds, as a prophylactic to the effects that my fighter cells may have. At 11 am my 300 million cells were presented to me by my research nurse and unit nurse. I donned my Dorothy red slippers T-shirt and Christine my nurse arrived on shift with her cancer crusher T-shirt!!! We gave the cells a blessing and the infusion started, all of 30 mins and it was done, squishing every last drip from the tubing. After lunch  the nurse told me that I will be monitored regulary to give me an indication of when I could receive the Aldesleukin. My blood pressure usually runs low, but it was lower than normal and I was feeling well. They were reluctant to commence with the Aldesleukin, as this product does drop the blood pressure amongst other things like flu like symptoms, fluid on the lung and puffy ankles as the albumin levels will be low. So after a few more BP checks over a couple of hours the doctors decided to go ahead and give it anyway. After the next check my blood pressure had come up, no kidding!!!
Only allowed to walk around the ward today as the masked lady and stayed awake to watch a whole movie. Feeling a bit more human today and enjoying food today. We will wait to see how tomorrow goes.

Chemotherapy Complete

                               

 This morning was my final dose of Fludarabine, and we are now about to venture into the next phase of this journey. The chemotherapy went fairly well, with the first 2 days being the worst due to nausea and then the combination of the anti nausea medication making me feel stoned, drowsey and lack of appetite. The dieticians have been working with me to help choose, palatable food from the menu and tailoring that also to my needs. Thankfully after the first day the doctors were able to tailor my anti nausea medication so that I was still able to function to some degree and this enabled me to walk around and get fresh air , which is really what makes me feel better and the nurses comment on my return on how much better I look.

 On day -2 we saw the doctors and was told that I could go out side for a while, as now my lymphocytes were starting to drop, so not to venture too far,. So after a massage, James and I went out into the hospital grounds and found ourselves heading towards the Safra family Lodge. I sat in the shade while James made lunch, we shared lunch then I thought it would be an idea to take a nap there for an hour. On our return at 4.30 we were met by the nurses to say that I was on 4 hrly vitals, and with some tongue and cheek and winking and towing the line, they still think I am a good patient.
That night I stayed in the hospital so I could receive my final dose of chemotherapy at 5 am, met with the Doctors who say everything is going according to plan, lymphocytes will continue to drop over the course of the day and to stay close by. I was lucky to get some acupuncture and then James and I went down to the recreation room to make some photo frames. It was nice to get out from the ward. We also enjoyed a stroll in the court yard, continuing to feel nauseous.
So tomorrow is day 0 and I will be hydrated overnight in preparation for my lymphocytes with the ant-MAGE-3. This will only take 30 mins . After that I will be given high doses of Aldesleukin every 8 hours as tolerated, perhaps up to 4 days and these will help the Ant-MAGE-3 cells stay in my body for as long as possible, in the hopes that they can fight the bad guys. Once this has been done I will be under close observation for side effects, signs of infection and monitoring the return of my imunity.