Enough is Enough

Anger is what I feel, and heartbreak, when I hear of yet another friend struggling with the realities of this disease.

Adrienne, an integral part of the online Hodgkin's community (along with her incredible mom, Alison), is currently in the hospital giving her all so that she may soon return home to her family, her studies and her puppies.

Please join us in sending the family your thoughts, intentions and wishes, and in visualizing Adrienne's full recovery.

We are also keeping Kathy in Ottawa close to our hearts. We think of you and Eric so often. To read about this thoughtful young man and his legacy, click here.

Good Eats

Another by-product of feeling great on the SGN trial has been the energy (and interest) to cook again. We have been trying out some new recipes from Clean Eating magazine which use a lot of ingredients I like. Though, I think I secretly want to be a food stylist. I like the "plating" part better than the actual cooking.

Halibut and Cabbage "Tacos" on Organic Sprouted Wheat Tortillas


Coconut Lime Chicken with (too much) Citrus Mango Salsa


Grilled Steak with Green Beans and Yams


Turkey and Cilantro Sandwich with Heirloom Tomato Salad


Caprese Pasta with Toasted (aka burnt) Pine Nuts and Basil



They're not all winners, but it's been fun trying out the recipes. This week we also test drove Raspberry Mint Mojitos on Catherine and Stefan who gave them the thumbs up (we've been making them since you guys left). It'd be a cryin' shame for all that mint to go to waste.

Summertime's Fine

I can't tell you how nice it has been this summer to have the energy to do the things I love.

During the summer of 2006, I was undergoing intense chemo and preparing for my stem cell transplant. The summer of 2007, I found out the transplant had failed and the disease had spread to my hip bone and liver.

Last summer, 2008, we were living in Montreal to give the MGCD0103 clinical trial a shot. By August, I was pretty beat up from the drug - itching insanely, down 15 pounds and horribly sleep deprived.

By the end of the month, I had been booted from the trial when it was discovered that the Hodgkin's had progressed and the only option available to me in Montreal was to have another transplant, this time a tandem auto/allo.

Given my extremely compromised health at that time and a transplant survival rate in the single digits, I wasn't feeling too optimistic about what lay ahead. When I reflect back, I really don't know how we got through any of it.

Well, actually, I do.

I am extremely lucky to have an incredible family and support system. I think the most important aspect of this support has been an underlying steadiness; we don't tend to freak out. Instead, the ol' WW II slogan comes into effect - keep calm and carry on.

Albeit, living with cancer as a "chronic" disease is hardly normal and it's the last thing I want to be doing. The worry and fear never really go away, but they do take a back seat once in awhile when I am feeling this good.

For that, I am so grateful.

***

My keep calm and carry on poster boy (hanging out in Josefine's parents' garden)


Idabel Lake where we spent a week in July


The lodge


Canoeing


Solstice daisies


Finn after the latest skunk incident (Ian wanted me to point out that he wouldn't normally wear sandals with socks, but the situation required immediate action)


Enjoying a brew at the Sam Roberts' show at Deer Lake Park. He opened with Detroit '67 (Chris C in the D, I'm sure you can groove on this one!) which got the crowd going right off the top.


Ian and Paul pleased with themselves for being ID'd at the show


Drinking age verified!


I don't know why imbibed people feel compelled to do this


Ahh, good times!

And the winner is...

Nancy from Wisconsin!

Hi Nancy!

Thanks for letting me know you were my 20,000th visitor. You are now famous in this corner of the dubya dubya dubya!

Nancy and I have never actually met but we frequent the same online lymphoma message board. I don't know what it means in the big picture, but maybe you should go out and buy a lottery ticket! Thanks again to everyone for taking the time to visit my blog these past three years. They've been a bit of a doozy.

Far less exciting this week is the result of my CT scan (after four cycles of SGN-35) which is still showing a "mixed" picture. Based on the reduction of disease activity reported on my recent PET scan, we were a bit surprised that the CT didn't show significantly smaller areas of disease. However, stable or better is enough to keep me on the trial and as long as I don't have any major side effects, I'll take it.

I feel fortunate (relatively speaking) that, so far, the effects of the drug have been minimal. I know several people on the trial who are experiencing some difficult symptoms, particularly neuropathy (pain and/or numbness) in the extremities.

I did develop a hive-like rash sometime between cycles two and three, but, after a visit to the dermatologist, a course of antihistamines seems to be doing the trick. Still, it would have been nice not to have spent the summer looking like I have scabies.

Aside from that and the odd narcoleptic episode for about 36 hours after my infusion, I continue to feel great. Still haven't cracked 100 with the hemoglobin though. Ninety-six and holding last week, god damn it.

Win Big!

OK, not really, but this week or next, my blog will reach 20,000 hits and YOU could be the one!

The one what, you ask? Well, my 20,000th visitor is all! Not that that likely means much to you, but I'm pretty flattered that people take time out of their busy lives to see how I am doing. I certainly didn't expect some of you to have to do it for three years. Sorry about that.

Anyway, while visiting my blog during this next week, be sure to scroll down to the bottom of the page to see what number visitor you are. If you're number 20,000, please let me know at: kirstennotkristen@hotmail.com.

You could be fleetingly famous (and, Mom, no repeat visits allowed).

Cautious Optimism

First, the really good news...

The preliminary results of yesterday's PET/CT scan have come back "favorable," meaning, I have responded to the SGN-35!

I won't have all the details until my appointment on Thursday, but my wonderful trial nurse, Cathy, was kind enough to phone just hours after my scan. The PET summary stated that my SUV levels (measure of disease activity) have decreased as has the nodal involvement in my body.

How much so, we aren't yet sure as we are still waiting on the CT report; however, this early information leads us to believe that I will be able to continue on the trial and, hopefully, keep getting medieval on the Hodgkin's.

Woohoo!

As if that weren't exciting enough, yesterday also included being detained at the U.S. border.

I should know better, but I completely forgot that I'm somewhat "radioactive" after my scans, so when we approached the border at Point Roberts, the guard came out and asked if "anyone had received medical treatment in the vehicle."

Ian thought he literally meant "in the vehicle" and promptly said no.

With a raised eyebrow the guard again asked if we were "indeed sure that no one in the vehicle had received medical care."

Yes, we now declared emphatically, but by this time he was already flagging our vehicle to be inspected.

To make yet another long story short, after going inside the customs office, I proceeded to continuously set off the security detector. An automated voice kept warning:

Gamma alert! Gamma alert!

Then various guards kept trying to "read me" with a hand-held detector but, apparently, "Lou" hadn't charged the first one, so it took about three goes before they realized they needed another one.

When "Bob" initially pointed it at me, I had the wherewithal to ask why exactly he was aiming what appeared to be a taser my way. He assured me it was harmless and that they just needed to confirm the reading with "Washington" before they let me go.

Um, ok.

In the meantime, you guessed it...

Gamma alert! Gamma alert!

At one point, they considered putting me in an empty office with the door closed to make the automated voice shut-up, but once it was ascertained that I wasn't a threat to homeland security, the guards let me sit in the regular waiting area.

An hour and a half later, "Washington" finally gave the call and we were free to go. So lucky Ian got to hop back in the Jeep with Nuclear Nellie and off we went.

Good grief, you can probably see me from Mars, but if PET scan number twelve's a charm, I'll take it.