Well, I think the Dr. was more grim about things than I took it to be. Perhaps because I was preparing for worst case. The CT scan confirmed the cancer has spread again. Lymph nodes in her neck (we knew that) and one in her aortic abdomen (we didn’t know). Of course you ask, ‘so in terms of prognosis, what does this mean?’ “When it spreads, its a game changer…” Well, you don’t want to hear that, but then again, it already had spread to her pancreas from before. So its bad, but it was not a surprise.
Can she recover? The Dr. gave an unequivocal “I don’t know”
One thing we do know is that it is possible. From the duodenal cancer group, we know of a few people that are Kathleen’s age and condition who beat this, so its not impossible. Just don’t know how probable.
Originally she was supposed to start next week with the chemo cocktail, but we asked if we could start today. So she did. Day One today. Literally the big fight now. We are really happy Kath started today as we feel we are at least doing something and not giving up.

update: The drugs Kathleen is taking is a combo of 3 called Folfox.  In a couple of months, the chemo Dr. will re-assess and perhaps we could look at Avastin.

—Mike

I kind of hate that expression (if life gives you lemons, make lemonaide), but then again we hate this situation. Still, we are trying to look for some light in these dark places and we do find it sometimes. After that gloomy post, I didnt want to leave the impression that we are sitting in the dark with our heads down. There are of course times like that, but we try and make the best of what we can. Its funny, as a kid, I hated the expression “just as good” which was my mother’s way of saying, “look, this is all we have and we will do the best we can with it.” Thanks Ma, that little life lesson is coming in very handy to cope with all this.

Also coming in handy are the extra pain meds. (Thanks Team Pain!) As Kath is not so worried about popping them like M&Ms its helped her to get a pretty pain free afternoon. Less pain means less clenching of her gut, which means less nausea which means more of an appetite. Once we finished at the Cancer Center, we had a nice drive together to go pick up her gravol order. Blasted a bit of Alice Russel, some St. Germain Electronica and LoFi. Then a walk to uptown Waterloo, and then upto Columbia Lake to play ball with Orville. Another perfect late August evening and thanks to the new pain meds, out of cancer’s shadow for just a bit to allow us to make our own.

—Mike

Unfortunately the literal, not proverbial. It seems the source of Kathleen’s shoulder pain are two very enlarged lymph nodes which likely indicates the cancer has spread to her neck area. She also has had trouble swallowing, so there is a good chance something (another node) is pushing against her esophagus. There are probably others below the surface that have been invaded as well. Just can’t feel those. She found the ones in her neck yesterday. Just like that, they were there. The Cancer Centre squeezed us in today with her backup GI Oncologist, as main chemo guy was away. Depending on the scan results, they might add others drugs to the Folfox mix that was to start next week. My guess avastin to attack the (probably) growing tumors, but thats just a guess based on reading what others with this type of cancer have gone through.

So the big CT scan this week will include almost everything from the abdomen and up. This is a very scary set back for her. For me, its tough enough to take this crappy news. For Kath, she has to deal with this in a very physically painful and drugged context. There have been a few nights where its been very tough on her. Up until now there has not been this level of pain at home. Although “team pain” is quite liberal with the meds, they only do so much and frankly she does not want to be on them as they have their own issues. But, its the least worst choice at this point.

So, what does it all mean ? Its really hard to say. Through the Duodenal cancer group, I know of at least 3 other people who had similar lymph node issues post surgery. It was treated with Folfox and they shrunk. Obviously we are hoping for the same results, but we were hoping the 6 months chemo would be to prevent things from forming in the first place, not to battle things on new fronts.

As one of the nurses said a while ago, we need to acclimatize to this new normal… again….

—Mike

Waiting

The early Simpsons episodes had some great moments in them.  The one I sometimes think of is Homer’s take on the 5 stages of grief. (23 second clip, worth a giggle http://goo.gl/sDzOB)  I have been thinking of the “bargaining” stage post radiation treatments.  As I mentioned in a previous post, the nice thing about going through the daily treatments is that you feel like you are making progress. Like one of those old school counters, you feel like you’re moving forward clicking over with each blast. Zap, click… zap, click. Progress. But you are seductively sucked into thinking there is some “deal” or “bargain” with the universe that it will somehow work. “OK universe, I zap the shit out of my guts, and you will make me cancer free and I will be better, right ?” I guess deep inside, I sort of feel that way with Kath’s radiation treatments, except of course, there is no deal, there is no bargain and the universe has no customer service department to complain.
Friday was definitely another low point. Kathleen was one barf away from being re-admitted to the hospital. I wont go into the gory details, but after 24hrs of not eating anything at all, its rather disconcerting to throw up a good quantity of something. After the second episode that morning, she agreed to call the cancer center if it happened again. After the 3rd she did and they said after the 4th, she will need to go to Emerg. Luckily no 4th. Then Saturday, a little better. A little food eaten, a little less pain. A bit more bites of food and a car ride to Sears to get a new vacuum cleaner

Summer walk

Sunday, well, not worse. Enough improvement to go on a very slow walk to enjoy the August evening sun.
Hopefully things will continue to improve like they have over the past 2 days, but if not, well no refunds eh ?

—Mike

Aka clip episode, aka recap show.  We kind of feel like we are in one right now.  You know those episodes on TV where the cast members are “trapped by an [earth quake|winter storm|power outage|Alien invasion|in prison|illness] and they reminisce about events past and speculate about the future.  Hollywood will do them typically at the end of a season when budgets are tight or if a main cast member is away for whatever reason and they need to be written out that week… So you have flashbacks and clips of previous episodes somehow woven into a ‘mostly new’ episode. Kind of feel like that right now.  Not too sick to be in the hospital, but feeling crappy enough not to venture out of the house very much and trapped in doors for the most part.   Thinking of times past and trying to look hopefully to the future.

It was nice to spend the day home with Kathleen today and take her on her errands.  She was feeling a little better compared to yesterday.  Still, she has some nasty breakthrough pain in her shoulder and neck which is rather worrisome.  Her CT is supposed to happen well before her next appt with her chemo oncologist which is the first week of Sept. Will the mass be smaller/bigger/gone on her pancreas ? Is it just a pinched nerve in her neck ?  A season one cliff hanger.  Will have to wait for the season 2 opener to find out.  Hopefully it wont be one of those annoying shows where all is not resolved.  Oh right, this is reality 🙂

Some lovely artwork from Kathleen’s sister

Its been a bit of an up and down week. Last weekend was certainly a low point and things seemed to be getting better for a bit. But then this weekend has been pretty rough and feels like she is back to square one. Lots of cramps, pain and vomiting despite all the heavy antiemetics. And lots of fatigue. She has not felt this tired and sore before. Will have to engage the pain and symptom folks tomorrow to see what they think. Kath is due for another big CT scan some time in the next week or so. If you recall, there was a mass on her pancreas we need to check on. So the closer we get to that, the anxiety level will start to crank up. For now, we are not really thinking about it.

One of the “plus” things about all the radiation treatments I have discovered in retrospect is that it gives you a sense of progress. You sort of feel that with each treatment, you are “doing something” and you make “progress” because in simple terms, you click over that counter. Now that its all done, there is a lot more time to let your mind wander which can be a bad thing some times.

All the emails and posts really do help, a lot. Kath looks forward to each and every one so keep em coming. She loves to hear what everyone is up to while she is stuck in the bubble.

—Mike

All done, “like a boss” as the kids say.  Way to go Kathleen, Radiation cover girl!

And a little movie of her crossing the finish line!

Boss Level (b[o^]s l[e^]v”[e^]l): Video game entity. Bosses are usually significantly superior to regular enemies, and are usually found at the end of a level or area.
Kath is at the boss level tomorrow. 28 of 28.  Today was a tough one. Tomorrow, that much more.  But then a break, and new battles after that.  But looking forward to the break and some much needed recovery!

radiation #28 of #28. Boss for this Level

Some days are Ms. Chemo and Some days are as Kathleen says, “Slash, Burn and Poison”… Surgery– the original slashing, Radiation burning and chemo… you get the idea.  The last three days were kind of like that.  We did get out for a lovely walk again on Sunday, at Synder’s flats with Orville, but it was a bit far to go.(Pics at picassaweb)  Then yesterday and today have been pretty rough for her breaking out the heavy tools to try and abate the pain and nausea.  She still managed to get the boss level radiation  #1 of #3 today.  A lot of will power, just not a lot of cooperation from her body.

At the bottom of the curve

Two more treatments to go and then a bit of time to catch her breath before the P in SBP starts in earnest.  Hopefully, there will be more days when she is Ms. Chemo than not as she needs to catch a break.

She really wanted to go to the beach, so off we went. Port Burwell.  Kath looks like she could be on the cover of ‘Chemo Today’ with this stance 🙂

We had a lot of fun at Port Burwell. Kath insisted that she eat some fries from the chip wagon and they even went down well. However, she did go a “Milkshake too far” and that unfortunately came up on the way home. But in the end, we all had an awesome day. Looking at the pics, I should create an album, “Places Kathleen has done gravol”. And to our nursing friends out there, dont worry, we took extra infection control precautions 🙂 We have some more pics at http://goo.gl/IjXkK on our picassa web site

Drugs on the beach

Normal protocol is 25 radiation treatments, but the trend in the US is 28 according to our radiation oncologist.  He couldn’t really tell us how much more effective 28 vs 25 is, but his gut feeling (working hypothesis sounds better) is that 28 if she can take it, is better. … What is ‘better’ ?…. ‘better’… Hmmm.   Considering Kathleen’s gut is feeling worse with every treatment, every day is getting harder and harder and she has to consider is the damage being done less worse than the potential for the cancer to take hold.  Yesterday morning was a bit of a scare as she threw up either old blood or bile. She hasnt eaten anything of quantity since Saturday, so it wasnt food.  Something that looked like cola syrup anyways.  If its 25, Friday is the last day. If its 28, a week from now.  The oncologist warned us that the last three are indeed tough and scaring, which doesnt even show up for a good 3-4 weeks after the last treatment, can potentially cause a blockage in her bowls– 1 in 100 vs 6 in 100.  Monday is a holiday, and she can opt out if need be Tuesday AM.  But for now, she has her eyes on 28 and will do what it takes to make it through.

Gutfeeling