The following post was written in stolen moments over the course of a full day, so it is a bit broken and disjointed. Apologies.
Another few days have come and gone, and as usual they have been filled with a lot of love and support. I am so grateful for our family and family-by-choice who have surrounded us with love. Ben soldiers on through the pain like the Titan he is (as I write this, I can hear him singing as he listens to tunes), and somehow he managed to push through the pain so we were able to get out with friends and celebrate a birthday. We had a very nice (albeit brief) night out. Ben was really happy to have made it out, especially when we arrived an hour and a half late and discovered two seats still saved for us. It brought a tear to my eye – they were saved ‘just incase’ we made it. So glad we did.
Thanksgiving came and went, and we enjoyed the best turkey I have ever cooked. Seriously – it was awesome. I don’t often brag about my cooking because, well, for the most part I cannot cook. But damn, that was one great turkey I cooked this year. I forgot to take a picture, but here are two of my favourite shots of the evening:
Waiting for the turkey Ben and Dad – so handsome!
Tuesday, if you recall, was set for Round 4 Part Deux of chemo, followed by a meeting with the oncologist to discuss the results of the CT scan. Once again, there was no shortage of support. Mom, Dad and Barb all came with us prepared to celebrate any good news or raise us up in love in the case of bad news. I don’t have a picture, but just imagine the 5 of us being led like the cars of a train into one of the tiny rooms that are a tight squeeze with just a patient and spouse. It was rather comical – Dr K kept leaving the room and returning with chair after chair after chair. If I recall correctly, he ended up standing himself.
The conversation with Dr K was tough, but was made better by the support in the room. The results were not unexpected, although we had hoped for a miracle that unfortunately did not arrive. Yet. The bottom line is that the chemo did not work, the tumour(s) have grown, and the current methods of treatment have been stopped. The new plan is this:
- We await the results of the POG trial which will either tell us that behind Door #1 there is no medication in existence that will help Ben, or behind Door #2 they discover that something unexpectedly common will help Ben. We hope for Door #2. Please, please, please …. door #2
- Dr K is having another pathologist review Ben’s diagnosis regarding the type of rare cancer he has in the hopes that the diagnosis can be reworded in such a way that he will meet the parameters of a different clinical trial
- If those two things do not work, Ben will be put on a drug called Sunitiniib. We will hope that one of the first two options will be the real answer, or at least the answer that continues to buy healthy time until a cure.
We have been told by both Dr K and by Dr H (pain doctor) to remain realistic regarding POG. In other words, we should not get our hopes up as they don’t expect it to find Ben’s answer. I disagree. I understand that the doctors get concerned about the emotional difficulty of continued disappointments – believe me, we know all about that – but what else is there really other then HOPE? It may not be common for the POG trial to easily identify a specific and currently existing drug that will reduce this shitty disease down to nothing, but it has happened before and it will definitely happen again, so why not for Ben? Really….why not? I know for a fact that there is no one more deserving of a cure. I also know that ‘deserving’ has nothing to do with it, but still the point remains … why not him? Someone wins the lottery every week. Its Ben’s turn.
(This was a break in my writing, during which time Ben and Dad left for the hospital)
For the next week or so we will concentrate on lessening Ben’s pain while waiting for the next step in treatment. Another PET scan is being arranged to help try to figure out what is going on at some of the main pain points. Dr H has set Ben up with a treatment where they will inject lidocaine throughout his body. Right now Ben and Dad are at VGH where Ben has checked in and is awaiting that treatment. I sure hope it works for him. Ben now has to get around using a cane, and despite the fact that it is a cool looking cane (black and sleek, thanks to Lelita’s grandfather) it is cumbersome and less then ideal for The Titan. Ben jokes that he wants a cane with a hidden sword in it, and Zak actually went hunting online to try to find him one. Hahaha. Thank Heavens Zak mentioned it to me before he tried to acquire a concealed weapon online for his father. Poor Zak… he was so sincere too.
Anyway, as you can imagine, this is a difficult time that just seems to keep getting harder. Finding that balance of what / how to tell the kids is also a challenge, but the love with which we are surrounded has helped to lighten the load.
(This was my break where I attended parent / teacher interviews. The girls are doing awesome in all their classes, but I, on the other hand, had a teary, snotty melt down in each interview. Blech. In addition to that, Ben sent a text from the hospital saying the lidocaine was not helping with the pain. So that sucks. I will find out more when he returns home.)
Back to the love….
One of the many examples of love and caring have come from Ben’s troop mates, many of whom he has not seen at all or only on occasion in over twenty years. Ben was in Troop 12, 1992/93, which was the only all male (and all french) troop on base at the time. They were a tight group of young men, and I’m pretty sure they were the only troop on base at the time to graduate with all original 24 members who started. I know that was in part due to the fact that they all helped each other through, as they have continued to do over the last two decades regardless of time and the distance between them.
Some of Ben’s troop mates have been in contact with me, and I have been moved by the comments they’ve made and by some of the memories they have shared with me, so I have posted portions of their emails below. (Ben does not know they have contacted me, so this will be his first read too):
Ben was my “pit partner” in depot. As such we had a chance to chat a lot at the old “D Block”. I don’t know if Ben will remember this , but initially in depot I was a terrible shot. Ben shot really well from the get go. I remember being worried on qualifications for the old 38, and telling Ben this. Ben, as a good friend and troop mate, offered to put one round into my target, to give me the extra edge. I thought about this , but on the day of the shoot, I told him I was good and thanked him. Ben was hoping to get a perfect score and the fact that he would sacrifice a goal of his to help me out was really, really appreciated. I did well that shoot and have continued on to be a good shot.
I would from time to time also go running with Ben after classes were done for the day as Ben was on remedial running. He hated to run. It was natural for us to do this (help each other out).
I also remember when you and him were getting serious and you had asked me if there was something Ben would like as a gift (graduation gift I think?). I knew that he wanted to get some cowboy boots and told you so. I think you went out and bought him some. I hope that cheapskate bought you something for your grad.
I of course went to your wedding and have good memories of that, including hanging out on the highway when the limo broke down. You were pretty pissed about that . Ben thought it was funny.
(Its true… I was pissed about the limo. And I can’t believe you remember the cowboy boots! He did not reciprocate with a gift, by the way. But I made him pay for that screw up over the last 23 years. haha)
Ben was without a doubt the most laid back and relaxed member of troup 12 while in training, and would always be looking at you with a smile on his face!!! He was one of the members who kept us together during bad times and made it easy for all of us to graduate together like we did.
I remember Big Ben’ meltdown as the weeks passed, losing pounds after pounds from extra workouts after hours, pushing harder while keeping the smile! Always ready to tell it the way it was, honest to his values, a key pylon of Troop 12 indeed!!!!”
Wendy, my family is sending you, the kids and Ben all the love we can…
Finding the right word in sad moment like this is very difficult. I had not have contact with Ben since we graduated in 1993 but I still feel well connected to this fabulous group of guys which Ben was part of. I had the chance to meet many of the member of troop 12 on different reunion over the years and like a big family, we always inquired about everyone situation. It is with sadness and broken heart that we followed news on Ben’s illness. I am so proud and not surprised that Ben is fighting this battle with courage.
I wish you, Ben and the family courage and strong ness during these difficult time.