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

Sunday, November 30, 2008

Island Girl

OK, it's only Bowen Island that I'm going to, which is exceptionally beautiful, but only a 19 minute ferry ride from the North Shore. I'm off on another Callanish retreat this week with the young adult group (I'm really riding that cusp...), for five days of delicious food, art, writing, yoga and relaxation. Just what I could use right about now.

It's been a stressful week as my dad has been in the hospital (he's hoping to go home tomorrow) and I had also been trying to get down to Seattle for a PET scan. In the end, we decided to wait instead for my scheduled scan here on December 22nd, reason being that even if the scan showed that there was significant disease activity, I'd have to wait until my counts were high enough to try something else.

As I am beginning week five of an eight week cycle with the Lomustine, the timing of the next scan and my next possible dose are very close, so it made sense to wait. Also, the suspect lymph node seems to have settled down as I have eased off on the yoga. Still, it was a tough call. However, lucky me, this means I'll get my next scan results on the 24th which is my birthday. It better be the present I'm asking for or I'm exchanging it for High School Musical 3.

Thursday, November 20, 2008

Happy Feet, Evil Lymph Node

With all the feelin' good of the last few weeks, I decided it was time to put my Vans back into my shoe rotation because, as you can see, they are quite celebratory in appearance. About five minutes after I put them on, however, I went outside and rolled my ankle. No serious damage occurred; rather, impractical as I am, I continued to wear them because they make me happy when I look down at my feet. Simple pleasures, I tell you.

What else makes me happy? Chocolate. And what's better than chocolate? Chocolate-flavored martinis! We were able to enjoy both at Leah's long-overdue "birthday" party...(thanks, Leah!)

Enjoying a white chocolate martini (why is my forehead so big?)

I've also really been enjoying yoga - we have a great new teacher - and my stamina is better than I thought it would be after being such a couch potato during this "recuperation" period. I'm still as inflexible as ever, but some things never change. I take comfort in the fact that I still have really good balance and could likely take up the unicycle if I get bored with my other hobbies.

After yoga, I've been heading over to the local coffee shop and setting up camp to write. So far, I've surprised myself by being quite productive. In the last two weeks, I have completed an article and four rough drafts for my short story collection. Not bad for two afternoons a week. I am giving myself an early spring deadline to have the manuscript finished and ready for its first edit.

Tonight, however, I am trying not to fret, OK, spaz is more like it (does anyone even use that word anymore?) about a suspicious-feeling lymph node that I detected in my groin area this afternoon (don't ask...) Previous PET scans have indicated activity in this area, but I have never been able to feel any nodes. I am hoping that because I have recently begun exercising more that it is possible to have lymph node inflammation in this area that is not directly caused by the Hodgkin's.

I have fired off an email to my oncologist who is not likely to recommend a scan, but I am increasingly sensing that I should get one anyway. This means going down to Seattle next week for a private scan, as the ONE machine here has a two month wait time and I can't get in until the 22nd of December. However, if I did wait for that one, I could wear antlers to be festive.

Thursday, November 13, 2008

Long May You Run

The rain has ceased and a beautiful, sunny day has arrived to celebrate
Teresa's life. She was born 37 years ago today.

Wednesday, November 12, 2008

I'll Take Alkaline Phosphatase for 1000 Please, Alex

So, it seems my feeling good lately was right on the money.

My latest blood work shows decreases in my LDH and alkaline phosphatase which, when high, can be indicators of disease activity. Both were quite elevated previous to my taking the Lomustine, but they have apparently fallen quite substantially.

Unfortunately, we also heard today that the protocol for SGN 35 has not yet been filed with Health Canada. Once the BCCA has the finalized protocol, activation takes 3-6 months. That means the SGN 35 trial will not open in BC earlier than March, perhaps later, which is frustrating, but we are encouraged by this latest response to the Lomustine (or, it could be all the cheezies I've been eating).

Here's hoping it/they continue to get medieval on the Hodgkin's until the start of the trial. I certainly will be.

Saturday, November 08, 2008

Doing the Chicken Dance

It's been a great few weeks...

I feel more "normal" (well, as normal as I get) than I have in months and my energy and stamina have returned in a big way, enough to enjoy five hours of retail therapy with my mom on Monday. It was so nice to spend "non-medical" time together as that has filled so many of our days these past few years.

I also had enough energy to exercise, go to yoga again and get in some long overdue visits with friends. Ian returned to work this week which also helps with the whole "return to normalcy" after such a stressful summer. We had one last "hurrah" by going over to the Sunshine Coast last week to "camp." Well, this is Ian's idea of camping anyway...

Our "tent" at Rockwater Secret Cove Resort

The view from inside

Ian enjoying Happy Hour on our patio

Me doing the same

So, now, the plan is to have another PET scan in the next few weeks, see where we're at, and, hopefully, get word in December as to how quickly the SGN 35 trial is expected to open in Vancouver. Obviously, the sooner the better so we don't have to relocate again for treatment. In the meantime, I'm working on a collection of short stories/personal narratives, and am looking forward to giving another writing workshop at the end of the month.

These beautiful friends of mine have been busy too. They make Wonder Woman jealous...

Lisa at the top of "a bitch of a hill" during her Century Ride in Honolulu for Team in Training

Leah and Anna at Light the Night in Stanley Park

Ahh, sweet November.