Monthly Archives: September 2014

Fall Health Update

Health Updates

I was not sure how to write this latest blog. In fact, I have been trying to do it for a week now, but it has been difficult.
I decided that I would just start with the headline first:
My cancer has progressed. I had a scan on September 12th that showed a new lesion on my liver and some nodes in my left lung.
Yep, undoubtedly this sucks and it has been a pretty bummer of a week for our families. Now you see why writing this was tough and it certainly isn’t my best work. 😦

Now…going back the past 8 weeks.

At the end of July I was back into a regular routine of chemo. 1 week on, 1 week off, then do it all again. I went through rounds 17, 18 and 19 during this time.
I mentioned this in a previous blog, but with each passing chemo, the more beat down I become. I have not been “bouncing” back after each round. So my off weeks have not been all that great. Energy has been sapped and my head always feels like its in a cloud. Focusing is tough and my memory is horrible. And the discomfort in my abdomen has been running wild. There isn’t a spot on my abdomen that I can push that isn’t tender.
This all got a little worse through the month of August. I was seriously considering taking a longer break from chemo (More than just an extra week) to let my body heal. My Oncologist was not a fan of this, but understands it is my decision. In the end I decided not to. I was taking an extra week off for Detroit, so I thought this might be enough.
Before my last round (#19 on Aug. 27th)) I had been starting to get headaches. I never get headaches so this was a little worrisome. Also that same week, I woke up to go to the bathroom and I could barely walk. I had this incredible flanking pain on both sides of my hips. I brought both up to my Oncologist that week. He wasn’t too concerned with the flanking pain, but was a little concerned about the headaches. I had a PET scan booked for Sept 30th, but we decided to move the scan date up in light of these new issues and my overall feeling of terribleness. It would only be a CT scan, not a PET, but would also include a CT scan of my head.
As crappy as I felt before round 19, my blood counts were still fine to proceed with chemo. It did help knowing that I had three weeks off after that round with a trip to Detroit mixed in. I should mention that even though my blood was good, one of my liver enzymes were elevated, but not enough to delay chemo. Also, the flanking pain did go away and we figured it was a pinched nerve from sleeping funny. The headaches decreased too.

The chemo “on” weeks have not been too bad. My worse days now are the Sunday/Monday. It kind of goes like this: Wednesday is chemo day and I feel horrible during infusion and for the rest of the night. Thursday and Friday have not been that bad. (I can get out of bed…). Saturday is on the fence and then the Sunday/Monday I am just laid right out. Tuesday used to be my day to get out, but now that has shifted to Wednesday and even then I just don’t feel myself. I push through the rest of the week, but I am tired, uncomfortable and frustrated.
Even Detroit was a struggle. It was still a great time, but I pushed myself way too hard. I don’t regret it as I wanted to have fun and feel normal for a few days. But I certainly paid for it when I got back to Calgary. We got in Thursday night (Sept 11th) and then I had my scan that next morning. As always we are stressed out surrounding an upcoming scan, but that following weekend was brutal physically. The abdominal discomfort was actually painful and all I wanted to do was close my eyes – even if I wasn’t tired.
Based on how I was feeling, I was fulling expecting the scan to be terrible. It was a chemo week and I did go for blood on Monday (15th) and then met with my Oncologist on the Tuesday morning (16th).
That Tuesday was a weird day. It was the first day I have woken up with a little jump in my step. Things felt more settled in my stomach, the headaches had lessened and overall I just felt more like I should. Needless to say, because I was feeling so good, I had a optimistic outlook on the scan results. My oncologist didn’t have the report yet, but we looked at the images. He doesn’t read the images, but can see the obvious stuff. We compared the previous scan to this one and he actually thought my original lesions had shrunk. In any case I was feeling pretty positive after our conversation.
I was also going to delay chemo another two weeks if the scan came back stable or better. Surprisingly my Oncologist was okay with this, but we agreed to wait for the official ct scan report. But then we looked at my blood counts…My liver enzymes were extremely elevated. They were too high too proceed with chemo that week. So for sure I was getting an extra week off. So if the scan was good – two weeks off. If not, we would have to proceed the following week. Well, I left thinking I had two more weeks off and the whole time I may actually feel good!
I was riding a pretty big high and then later in the day I got a call from my Doctor with the crap news. A new lesion was found on my right liver lobe measuring 1cmx2cm. Larger than any of the lesions they had originally found last October. They also found some nodules on my left lung with the largest measuring 4mm. Complete and utter disappointment – from hero to zero in about 2 minutes.
The other flag is that my CEA level has slowly climbed back up. CEA (Carcinoembryonic Antigen) is a protein that we all have, but can be elevated in the presence of certain cancers. It is tumour marker, but by no means accurate. It hasn’t been a real accurate test for me, but back in April it was around 2.5, July it was around 5 – which are both normal limits. However, end of August showed a CEA level of 10. At my initial diagnosis in May 2013 my CEA was 13.6. So, not a very promising result – regardless of its effectiveness.

So, what does this all mean? Well it means my current chemo cocktail is no longer effective. My cancer has grown in spite of this chemo and I will have to move to another treatment. What sucks is that I have been trying hard not to be a cancer statistic. That my prognosis of 1 year without treatment and 2 years with treatment could be beaten. Not saying that it still can’t, but I am moving on to my last standard of care chemo treatment. After this, then it is hopefully finding a trial and then hoping that trial is also effective. Last April, when we got the first positive scan I had asked my Oncologist how long chemo typically lasts for. (That is why for most people chemo is not a cure. The cancer becomes resistant. Similar to insects and pesticides). He told me about 8 months. I am exactly 8 months with this chemo. Hence, I am a stat. I fall into the category of everyone else. Now, I will be on my last line of defense and there is no guarantees this will work. While there is no benefit in looking ahead in my path, it is hard not to. If this new chemo works, then what? I have 8 months on it and that’s it? I hate sounding defeated but it feels like it sometimes. When we started this journey there were lots of options, but as time marches these options are slowly disappearing.

On the positive side, things could have been a lot worse on the scan. My head CT scan came back clear and with the way I had been feeling, I am not sure it would have surprised me that the cancer had significantly progressed. Also, the original lesions have not changed (still stable). And we also have another chemo agent which could be the cancer bomb for me. It may be more effective than anything else so far!
Another bullet in my gun is that I start logo-regional hyperthermia this week. I mentioned before about us considering going to Germany for this. Well, Calgary just got the first unit in Alberta. The idea is to do this the same time as chemo. Studies show it makes the chemo more effective. There is a clinic in Ft. Langley BC, but I would not be able to travel there during my chemo week. And with Germany, they do chemo and hyperthermia at the same time. So, having this in my backyard is a big positive and who knows what could come out of it.

This week (22nd), I have blood again and if my counts have come down I will have chemo on Wednesday. After this round, they are still sending me for a PET scan (Oct.3). They want to confirm extent of new disease as well as to see what is happening with original lesions.

Yeah its the wonderful ups and downs. Was really hoping to go a little longer on this chemo agent and not have to share this news already. Don’t want to be a stat. Two years is just not an acceptable prognosis – I flat out refuse it.

But, everything we do is still all about playing for time. A silver bullet would be nice, but not realistic. There is a reality for me and my family, which is why it is so important to live for today. I am not saying this as some motivational speaker. It is simply to remind myself to not let tomorrow ruin today. Its hard, but I have gotten a lot better at it.

Will update more as info comes available,
Dan

The past 6 weeks

Life Updates

Not a lot has been happening since my last post until this past week. But I decided to write it two parts. A life part and then a health update.

When we got back from the Okanagan, my friend Jason was in town for a couple of weeks. It was great having him around and was a nice distraction after coming home from holidays. He left July 28th and since then it has been fairly routine for us. Chemo week on, chemo week off, and repeat.

We stuck around home during the month of August. Renee had lots of weddings and work to do. I have also been enjoying getting into work when I could. Audrey was in a couple of camps – Peddalheads and Southland Leisure Centre. Her Peddalheads bike camp was good and she did it last year too. However, she refuses to ride and practice at home. She tells us she will just learn at camp every year. So it may take five years before she learns how to ride a bike! I should also mention Audrey is also 5 going on 13. It seems like since she turned 5, she has gotten that much more mature. Not only has she grown a ton and is the tallest kid in every thing she does, she also has the mouth to go with it. She is awesomly stubborn, quick with the whip and a “lovely challenge” sometimes. 🙂
A few weeks ago Renee asked her to do something (a few times) and finally, under her breath, says “fine” in a snotty way. Of course Renee hears it and questions her. Audrey’s response was “How did you hear that?” in a teenager sort of way. It is crazy how and where they learn behaviour.
I was also in stitches not long ago as well. My mom was coming to pick Audrey up as Renee had left for work and I was heading to an appointment. I am trying to get Audrey ready (a challenge inherited from her dad) and I made her some toast. I kept telling her it was ready and then after a couple of times added that it was getting cold. Her response from her bedroom…”Well, put a lid on it!” The tone and the dual meaning of literally putting a lid on it to keep it warm, combined with telling her dad to shut the %$^& up couldn’t have been better. I was in the kitchen in tears with “quiet” laughter. Couldn’t believe this came out of my five year old. Scary and awesome at the same time.

Being at home for a stretch also allowed us to spend more time with family and friends. It was still a seemingly busy month and went by quickly. Mind you with each two week cycle I only have five productive days to “do things”. And even those days have been a challenge lately, but I will add to that in the next post.

Audrey did start kindergarten last week. Sniff, sniff. And she also takes the bus which picks her up right down our street. She was super excited, but did tell Renee she was nervous. She was upset on her first day because we drove her and she didn’t get to take the bus. But now that she takes the bus, she refused to take it on Thursday morning. Renee had to drive her. This is the five year old that seems more her age…! But she loves it and loves being around other kids.

I also booked a trip with my brother in law to go to Detroit in September which we actually just got home from. It was great to have something on the horizon again and of course the trip was awesome. People looked at us funny and would ask “Why Detroit?”. Well, quite simply it was to go see the Detroit Lions play Monday night football. I have never see a Lions’ game and I have been cheering for them since I started watching the NFL 20 years ago. Why did I chose this team? 2 Reasons: Barry Sanders (elite running in the 90’s) and the movie Beverly Hills Cop (Eddie Murphy played a cop from Detroit and wore a Lions’ jacket in the movie). The past 20 years have been tough as a fan as they have been one of the worst teams during this 20 year span. I am hoping the next coming years prove to be different as there are a lot of good things happening with the team.
But I digress, this Monday night game was amazing for me. Not only was it my first time seeing them play, they won and it was pretty cool to be around the same fans. There aren’t too many Detroit Lions fans in Calgary!

We also added two Detroit Tigers’ games as well. I love going to baseball games. I have always cheered for the Tigers because of the Lions but I have cheered for other teams too. But on this trip I declared my allegiance to the Tigers. Officially they are my ball team now. Love the history and loved the experience. It also didn’t hurt that five of the most notable Detroit Lions sat right in front of us on Tuesday night game. Chatted with a couple of them and got my picture with Reggie Bush. Even though the Monday night football game was pretty special the whole day on Tuesday was epic. Tuesday started with a Ford Field (Lions) tour at 11. They took us everywhere and we got to see everything. We actually got to hang out on the field, the locker rooms and press area. I have been on a couple of baseball tours but they always have “no go” areas, but this tour was different. I kept asking our tour guide to just round us up when she needed to move on, but she kept saying this was for us. “Take as much time as you want. The fans make this all happen.” Pretty cool response and hanging out on the turf for a half hour was awesome. The turf is fake and it is covered in rubber sand. When you push your fingers into it, it leaves a mark like memory foam.
Then right after this tour, we rushed across the street to start the Comerica Park tour (Tigers). This tour was great but nothing near the Lions’ tour. They talked history and we got to go into the home team dugout. But no locker rooms or other team areas. It was kind of a ticket sales pitch tour.
After the tours we had a quick change back at the hotel. We stayed at the Marriott in the Renaissance Center. Then headed to the restaurant “Roast”. It is a Michael Symon (Iron Chef) restaurant. It was in the Westin and I acutally found the decorating a little pretentious. That was quickly brushed aside once we got our food. It was amazing. Decided to try Wagu beef for the first time. It is crazy expensive but I wanted to know what all the hype was about. This steak was nothing like I have had before. It had a smooth dense texture. Almost like Ahi Tuna but more firm. It was impressive and glad I tried it – even at the $70 price tag. (I was on holidays!!)
After dinner, we headed to the baseball game. The weather was beautiful and this was a divisional game against the KC Royals. These teams are basically back and forth right now for the division lead for the AL Central pennant.
We had good seats to the game (Row 4 behind Tigers’ dugout). But we noticed that it was strange no one was sitting in front of us. Then, as I mentioned, after the first inning those seats were occupied by 5 of the most notable members of the Detroit Lions and their wives. Needless to say I was a bit starstruck. Got some photos taken and high fived with them on the Tigers’ two home runs. All in all, it was an amazing moment and day.

Now we are back to a fall routine. With Audrey being in full time school, Renee is working a little bit more. When she is not looking after me of course…
Not sure what we will do over the next few months. I hope to get into work as much as possible as I do enjoy it. We have a renovation planned for our West Springs location in November. Pretty excited to see how everything goes with that.
Renee has a girls trip booked to Mexico for 5 days in October. A little bit short but much needed for my overworked wife. She is the household and our glue.

Also a big congratulations to our friends Dan and Nadia. They got married last weeked at the Banff Springs Hotel. Wonderful wedding, great setting and happy to be a part of their day!

Hope the summer treated everyone well, and as I said, my Health update will follow shortly.
Dan