Poked and Proded along the road

After a barrage of scans and tests over the last few days and enjoying the freedom of two nights in the lodge and one run with James. I am now officially an inpatient as of today. I had my Hickman line inserted and met with the whole team of Doctors, some of which visited me 3 times in the course of the day to check that I fully understood what the trial entails and to answer any remaining questions I had. Met with the dietician who was keen to prepare any kind of protein smoothie I want and wants to make my life as easy and healthy as possible during my stay.
The team of nurses and Doctors are very approachable, down to earth and brilliantly minded, so I am confident that I am in good hands.
I made sure that I got out for a walk round the grounds and sat in the court yard between the waiting. And the team know that I will be trying to do that as much as possible.....nothing like fresh air!!
However for the next two days I will be receiving some Cyclophosphamide and will be attached to an IV pole continuously for the 2 days, receiving the chemo, being hydrated and also having to pee every 2 hours to protect my bladder oh and also feeling pretty groggy. Then for 5 days after that I may regain some freedom, only having to return twice daily for another chemo.
So I am set up to watch lots of the new series "Outlander", laugh with Billy Connelly maybe do a bit of reading.   

First week of trial

After being back here for a few days, James and I had settled into the Safra Family Lodge and had met with the team who seem a very knowledgeable and down to earth group of people. I told them of my concerns with regard to swallowing changes and my recent hoarse voice which I am now thinking may be due to the progression of disease as opposed to a viral infection. This is all very overwhelming and has made me second guess the reasons why I am doing the trial. Should I be at home seeking conventional chemotherapy and radiation to shrink things, allowing me to spend time with my family, or is this truly the right direction for me.
After a barrage of scans and tests over the last few days and enjoying the freedom of two nights in the lodge and one run with James. I am now officially an inpatient as of today. I had my Hickman line inserted today, Wednesday and met with the whole team of Doctors, some of which visited me 3 times in the course of the day to check that I fully understood what the trial entails and to answer any remaining questions I had. Met with the dietician who was keen to prepare any kind of protein smoothie I want and wants to make my life as easy and healthy as possible during my stay.
The team of nurses and Doctors are very approachable, down to earth and brilliantly minded, so I am confident that I am in good hands.
I made sure that I got out for a walk round the grounds and sat in the court yard between the waiting. And the team know that I will be trying to do that as much as possible.....nothing like fresh air!!

The plan was to start chemo on the Thurs evening, 2 days of cyclophosphamide and 5 days of Fluberadine. However on Thurs afternoon, the doctors did their rounds and told me that they planned to do a Stem Cell Harvest, to harvest my stem cells in case my immunity didn't return to normal and that they would then rescue me with my own cells. This would mean twice daily injections of Neupogen and daily iron pills to encourage white cell production from the bone marrow and then they would do apheresis to harvest the cells. Again plans have changed and there is no firm date for chemo.

Friday late afternoon we went into Bethesda and had a lovely dinner at a French bakery and started to make plans for the weekend.
On Saturday we did 30 mins on the cross trainer and then went for a walk in the rain to Rock creek trail near the NIH. We knew that we wanted to catch a movie that afternoon, so made it to the metro station  returned to our new favorite French café for a quick lunch and then found the movie theatre in Bethesda and watched the 1.30 showing of If I Stay.
We headed back for my injection and line flush.
Sunday, I headed over early for my injection, discussed my rib pain and prescribed some oxycodone and then we went to All Fired Up in Bethesda to do ceramic painting, we did that for the next two days accomplishing a mug and plates for the kids.
Monday, did treadmill for 30 mins before morning took time to discuss my rib pain that I had been getting at night and wasn't being relieved by oxycodone or percocet. The sleep disturbance is partly due to the irritation of the Hickman line and the pain in my ribs. The Percocet and oxycodone don't help and I am awake every hour during the night trying to get comfortable. My eyes feel heavy and tired and I need to get my body to sleep. The fact that the analgesia isn't working puzzles me, as I am not one for taking heavy meds, so I asked if I could have Ativan to help relax me. I had a meeting with the Palliative Pain team and they were open to my suggestion, offered me acupuncture and relaxation techniques.
Final day trip was  into Georgetown, an area of Washington full of character of old America, brickwork, cobbled streets and canals, it also has a beautiful river front where people gather to enjoy and play in the water fountain. We enjoyed a delicious lunch at a patisserie and visited my favorite hat shop called Gourwins to buy a hat for Heather and Finlay, we enjoyed a frozen yogurt before heading back to the lodge for dinner. That night the Ativan worked a treat and was able to have a good night sleep...at last
Wednesday, another shot met with the doctors and then went back to the lodge for a run round the campus, it was great to get out running again, although slow. We relaxed in the lodge gardens, had a leisurely lunch and iced coffee in the court yard before heading back to the gardens for a game of rummy cub, skyping with the kids and mum and dad.
Last injection and the word that I would be required back on the unit at 5.30 for final injection and stem cell harvest.
The stem cell harvest took six hours and felt drowsy and wiped out during that time, we returned to the unit after 2pm, and met with a recreation therapist who gave me a sound therapy chair which plays beautiful ocean music, met with the doctors who want to check that they have enough stem cells. If not I will have to go through it all again tomorrow and another 2 injections. Either way I need replenishing with Magnesium and Potassium. They also told me that the chemo won't start until next Friday, so I have the option of going home and returning on Thurs for blood work.
Another disappointment in the fact that I want to get this up and running, however it would be great to see the family and the kids, take in the Highland games and be there for the first day of school. Only to go through another series of goodbyes.

Trial round 2

After the call on the Monday from NIH to say the trial was back on, I had to readjust my thinking again.
My friends were back in town, Erika, Andrea and Cathy all met for lunch and we discussed the progress which had come to light and also the progress that Cathy had made after her recent separation from Troy. We were able to start to talk and make plans of what I should do for the next part of my journey. Over the next day I decided that I would fly down on the Sunday 17th a opposed to the 12th. This giving me time to arrange care for the kids, see Heather and Finlay receive awards at the Coho AGM and also celebrate a family birthday for Heather, as she wanted a trip to the zoo.
So the plan was set, Heather and Finlay would stay at Andreas from the 17th -20th. Jill, Dave, Helen, Josh and Sam would arrive on the 20th and continue with the holiday to Peachland on the 23rd for a week. Managed to get everything organised for school and booked some of their activities for fall.

Saturday was filled with final arrangements, buying shoes for the kids, an excellent visit fro Chad and Shannon who had driven across Canada in 4 days in order to visit with us. The kids has a brilliant time having a water fight. Jo and Natalie also visited in the evening, then I eventually packed.

So off we flew after an emotional cheerio from the kids. Finlay hopes that they can find a cure for my cancer and reminded me that it will be ok if I die as I will be able to look down on them and that when he dies, then we can be together again. Heather gave me a wonderful hug and both of them will miss me....not as much as I will miss them. However I know they will have lots of fun and will be in good hands. It will be harder this time, being away from the kids with James here, the family seems more separated than before. Finlay has been more concerned with the fact that we will both be away. This time I know it is going to be straight into it on arrival, no tourist days, here for the full four weeks, also the realisation that this isn't going to be a breeze and the potential of my strength, fitness and quality of life being compromised all for a trial, that may or may not work. Also hearing from Janet with her disappointing news that the good cells which they had engineered had not been strong enough to stand against the bad guys. But how can I not give it a go. All these options now come with a cost. Tom Baker is only offering me chemotherapy which will definitely compromise my health and only potentially extend my life for 2 months.

We arrived late on the Sunday, was admitted, had blood work, ECG, urine etc and finally got to bed at 01.30, for a sleep before waking to book Heather and Finlay for swimming lessons for the fall and then a chest xray. Giving James and I the afternoon to buy groceries and go out for a meal.

Next day was a 8 am arrival at the ward, for a ct scan at 9.40. Later on met with Dr Patel and his team. Swallowing has now changed, it seems a bit more restricting when I don't concentrate on chewing, I also have right sided rib pain. All will be revealed when they go over the results of the ct scan later. But my tumours may be active and growing again.

Camping and Hiking weekend

 

Hike to Elbow Lake

 

After finding out he trial was back on, we decided to pack as much into the remaining week as possible. That included the possibility of a river and camping trip with Kerry and Adrian and the twins. I was a little concerned, as I had back pain and also we discovered that the back country camp site was full and the river that we were thinking about canoeing was a class III. However our friends were still going camping and hiking and James and I couldn't decide the prior evening whether to just hike and not bother camping. The following morning without discussing it, we found ourselves gathering food, collecting our camping gear and packing the truck to meet our friends on convoy to Kananaskis country.

We pitched our tent and had a leisurely lunch, before starting our hike to Elbow lake at 3 pm



 

 

On our way to the glacier

 

 

Hurrying up to take in nature



 

Making it to see the glacier

 

 

A beautiful evening stroll back down ready for dinner.





By the time we completed the 7.6 km hike it was early evening by the time we got back to the parking lot. Everybody was ready for more snacks to tide them over to dinner. We had a lovely pot luck meal, kids enjoyed " smores" and a campfire and exploring the forest. Another late night after lots of fresh air made for an easy bed time and gave the adults some time to chat and laugh with good old British humour.

Day 2 Mt Infatigable

 

 

Only for some

 

 

 

But not for us

 



The reward of a refreshing swim

More Trials and Tribulations

After arriving home on the Friday the 25th July, after the disappointing news that the trial could not proceed, I was greeted home with big hugs, balloons and cards. The kids were in a swim meet the following day and then on the Sunday I visited Cathy in Banff hospital, kids met friends from swim club for a game of capture the flag and Heather had a birthday party. During the week, I managed to get my head around the fact that the trial wasn't going ahead and got back on track with my supplements, organise my Vitamin C, I also was informed of the possibility of 2 more trials that I may qualify for. In order to do so I needed to have my slides tested for HER2 expression and also needed an Echocardiogram. The NIH would do the HER2 testing and I got an echo done in Calgary on Wednesday. There were some fun parts to the week also, went for a family canoe on the Bow river one evening, ran with Erika on Thurs, ran myself while kids swam on Friday and finished by taking in a free concert outside the civic centre as the opening to the Folk Festival. James went to work 2 days and then we enjoyed a weekend with going to see "Wicked" on the Saturday and then hiked up Ha Ling on Sunday with Kerry and Adrian on Sunday.
Monday morning I received a phone call from the fellow doctor involved in the "anti-mage 3 " trial informing me that they had discovered that the condition of the first patient wasn't due to the cells or the interleukin2 and that the trial could go ahead. There was the opportunity to commence on the 15 Aug. Again my world was rocked and again I had to alter my thinking after settling back into my life. I spoke to my mum and skyped with Linda, has a few tears with James and then had to get back into decision making mode.
I also heard from Dr Conlon who is running the Interleukin15 trial, and took the opportunity to then contact all the Drs, Dr Wood, the HER2 trial, Dr Conlon, the interleukin15 trial and Dr Sherry, the anti Mage 3 trial" and asked them to collaborate together and recommend which direction would be of benefit for me. So over the next few days I will wait to hear about the recommendations and try to make a decision from there.
It is funny what you hold on to and reflect to. I know look back to my time there, I would almost have been completed my trial by now. The unit seemed fuller with Janet being there and I remember seeing her before she was discharged, telling her our disappointing news. I also remember how empty the unit and the room felt when we returned later that day to talk to the nurse and Janet had been discharged. I know that we had everything set up, with support for me from my Mum and Linda, support for my Mum from Linda and special moments in Washington  and Safra lodge. I have the horrible feeling that things can never be repeated and I know that my next journey down there will be different, with new experiences and different connections.

Climb every mountain

 

 Finlay has been asking to climb a mountain for a few months now, many days looking out our window at the Three Sisters and asking when we can climb to the top. Our kids have done many hikes up local small peaks, including Tunnel mountain and Lake Agnes Tea house, but nothing as steep and high as Ha Ling which is a prominent peak over looking Canmore from 7,900 ft from sea level.

 

 However, living in Canmore we are already at the height of Ben Nevis. So some advantage to begin with.

 

 We hiked with another family for safety in numbers and motivation purposes and it worked like a charm. We had packed a ruck sac full of little treats to entice the kids to keep on walking, however this time they were not needed. The 4 older kids, Ben, Lucy, Aria and Heather were like mountain goats and we couldn't see them for dust. Once we reached the tree line, the plan was to stop for lunch, however we got there with no kids to be seen and 4 out of breath adults!!

 

 So I had to bellow at them to stop so they didn't go too far, as the summit is very exposed and tricky. They held on for us and we hoped to stop for lunch, but general consensus from they kids was to continue to the summit. Lunch at last after 2,260ft or 700m elevation gain in 2 hours.

 

 Comfy seat on the way down.

 

 

Proud as punch.

 

I have no doubt who will be feeling worse tomorrow.

 

 

Last minute recreation before the trial.

The following days after Finlay's Birthday were busy with final arrangements and packing, not to mention taking Gavin and Maxwell to the Douglas Firs water slides for Finlay's Birthday on the Monday as they were unable to make the trip. We also enjoyed a girls hiking day to Ptarmigan ridge, with Andrea, Cathy, Leslie, Erika, Beth, Cathy's sister Fran and Linda. Accompanied with lovely cheese fondu and wine. It was a great pow wow and a chance for tears to be shed, news to be broken, fears to be discussed, wishes to be granted. in the security of our friendship group.

I spoke about my fears for the future, hoping to see another one of Finlay's and Heather's birthdays, my hope that James can keep giving the kids the same quality of life that we have so strongly strived and worked for, my wish that things could be different.

It was a beautiful day, fantastic friendship and support and was proud that Linda could be part of it and meet the people who have been a huge support to me in the past 7 months.

 

Then it was off to Kerry's house for a bar b q that evening, before packing. Then a breakfast at Silver tips with friends from work. Quick last dose of Iv VitC , before heading to the hotel for a meal and sleep before our travels with Linda to Washington.

Finlay's 6th Birthday

 

Linda arrived on the Friday afternoon and then was fully thrown into some mountain activity. On Saturday morning we gathered our clothes, camping supplies, food for an overnight camping adventure to Wild Cat Island for Finlay's birthday. Two other families came with us, Andrea and Lee, with Sola and Toben, and also Adrian and Kerry with Ben and Lucy. As we were 5 we borrowed a raft from our neighbour and packed it full of equipment and Birthday cake!!

 

 

 

We met at the Ghost Dam where we were to put in our boats, but due to the flood last year the access had been washed away and were left with a long way to carry our supplies over rocky ground. It was also nearing 30 degrees, so everyone  apart from the kids were feeling a bit exhausted. They had managed to find a pool of water to play in while we organised things.
Once we were on the water it felt a lot cooler and we enjoyed an hour and a half float down the Bow River. There were some sections with class one rapids and Heather and Finlay thoroughly enjoyed that as we rode them, and got splashed, with screams of excitement and wailing of laughter. Finlay especially was so excited and kept saying how cool it was and how happy he was that we were doing this for his birthday. I was very happy that we were in the raft as opposed to our canoe as I watched our friends bailing out their canoes with milk jugs!

Destination "Wild Cat Island"

 

On arrival at Wild Cat Island we unloaded the canoes and raft and then before setting up camp we took the opportunity to have some beer and nachos. I had my first beer in months, but hey it was a great reason to celebrate and break a restriction.

As the adults were sitting, talking and relaxing we suddenly realised how quiet it was to say that there were 6 kids of ours on the Island. However they were engrossed in making their own fun together, exploring, digging, water carrying and generally getting messy..... Fantastic!!

 



Been a few years since pitching this tent, thankfully no holes and no mold.

 

Dinners up.

 

Wot, no kids

 

Oh yes... how could we forget!!!

 



 

A birthday tradition for Finlay.... Bobbing for donuts.

 

 

A favorite for all the kids....toasted marshmallows.

 

 

And finally the highlight of the evening, Treasure island Birthday Cake, complete with dolphins, doubloons, treasure map, skull, candles made into palm trees and a hidden chocolate treasure chest within the cake filled with chocolate coins and rock candy.
Then all the adults waited to see how long it would take for the sugar rush to kick in... all of about 3 mins... Finlay began charging around, shouting in his loudest voice, brandishing his arms around in the long grass shouting out that he was the strongest man and going to punch down this tree and the long grass. He had turned into my little warrior, a proper little boy, a side that we don't get to see too often.
After another few games of "ruler of the world" and a team laughing game.

 

By sunset, the excitement of the day was slowly settling to exhaustion. Ready for a good night sleep.

 

Raring to go again at breakfast.

 

Once we fed everyone, broke camp, reloaded and re-launched for our final portion of the journey. Another 2 hour ride down the river. This time we had all 6 kids in the raft ready for the excitement of being soaked in the rapids. Mission accomplished. 

Two Jacks Camping

 

 The weekend before Linda arrived, we had a family camping weekend at Two jacks lake in Banff where we enjoyed some biking and fishing, campfires and smores.

Fishing by the side of Lake Miniwanka.

Canada Day

Pancake breakfast before the Canada day run.

 

A great day was had by all. We did the family fun run 3km as a family and met Kerry and Adrian with Ben and Lucy. Kerry and I ran with the girls and James ran with Finlay who won a gold medal for coming first un the 5 and under age group.

 

We continued with some fun at centennial park, then returned to our friends house for some lunch and snacks and refreshments. After refuelling and a quick change we all headed to Main street for the Canada Day Parade.

Our day ended with the pupils from Elizabeth Rummel School singing "Oh Canada"