Chronicle of a Stem Cell Transplant (and on through to the other side)

Thursday, December 24, 2009

Let Them (and Me) Eat Cake

...and that's exactly what I'm going to do tonight for my birthday.

I am demanding that we go to the Cheesecake Factory so I can eat cake for dinner (after we spend the afternoon at the pool). Sure beats last year when we had two feet of snow in Vancouver and I had to go for a PET scan.

Last night we went to a Christmas light display and made S'mores in the desert around a big!

Now it's time to turn up the speakers and listen to one of my favorite songs ("The Great Defector" that's playing right now). I love the lyrics in this song, especially the line I love the colour of it all. I certainly do.

Happy birthday to me and happy holidays to you!

Monday, December 21, 2009

Heading South

When in doubt, run for the border!

We're headed to the California desert tomorrow for what will hopefully be a reprieve from thinking about my options, or lack thereof.

With any luck, I should be pitching an umbrella in my drink by dinner instead of thinking about CTs, doctors and clinical trials.

Cin cin!

(check out the Lego dudes to the right...WTF?)

Thursday, December 17, 2009

Double Sixes

Well, your community and cross-country finger crossing did the trick...

I'm still on the trial!

It's a bit of a long story, but when all was said and done today, and after some insistence and negotiation, it was agreed that another dose of SGN-35 is my best option at this point.

While my latest set of scans shows some progression, it is not "global." Some areas have remained stable and a few have even decreased. There are also no new areas of disease.

Certainly, we have to keep a very close eye on things, but given that I feel relatively well and the progression seems slow (not to mention, there are no other treatment options available here), I believe that I have and continue to achieve some significant benefit with this drug.

However, it seems that some doctors are still not understanding that many of us who are living with refractory Hodgkin's are treating it as a chronic condition (what I wouldn't give to be stuck with chronic halitosis instead).

With that in mind, while "stable" disease would be great, a slow progression with minimal side effects is the next best thing and worth maintaining in the absence of anything better.

I wish I could just buy some peppermint mouthwash and call it a day.

Tuesday, December 15, 2009

Free Parking

I have not yet passed Go, nor have I been sent directly to Jail.

I guess I am in the rather nebulous Free Parking zone.

My scan has come back showing more progression in the liver, abdomen and supraclavicular areas, but it is still not clear as to whether it is sizeable enough to warrant my being taken off the trial.

We will have a better idea after my appointment this Thursday.

Here's hoping I roll doubles and get the hell out of Dodge.

Thursday, December 10, 2009

Passing Go

I've been trying to decide what to write for days and still seem unable.

It has been an eventful few weeks, but I've also had plenty of down time, which is good. My body and mind need it. I also like the idea of making like the rest of the natural world, settling into the rhythm of the season with a gentle hibernation instead of lighting things up like a boxing-day shopper on crack.

In doing so, I am using my "off" and "no" buttons more frequently. After all, nobody is keeping track but me.

Oh, and ICBC.

They recently sent me a bill for a speeding ticket I got en route to Calgary in 1994.

Seriously, am I still on the hook for what I did when I was 18? I considered waiting until they phoned to see if they'd try and collect from someone on chemotherapy. There have to be better perks for flashing your cancer card than getting priority for the H1N1 vaccine. It's worth a try.

Tomorrow (Friday), I will be up bright and early to have my next CT scan before getting the go ahead to remain on the SGN-35 trial. By the way, SGN-35 was officially named several months ago as the very catchy Brentuximab Vedotin. Rolls off the tongue, don't you think?

If things remain "stable" or better, I'll get another check mark and infusion #11 next Friday. Scans will happen every eight weeks or so, and as long as I can keep getting these kind of results, I should be able to remain on the trial. If not, well, we'll cross that bridge if we get to it.

So, fingers will be crossed over the weekend as we wait for the results.

Feel free to cross a few of your own, or twelve!