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

Saturday, July 25, 2009

Smooth Sailing

So I had my treatment yesterday without incident.

My nurse was efficient, if somewhat boring. No hijnks or reprimands. We did, however, spot Nurse Ratched. She was bawling out an orderly telling him he "SHOULD HAVE" done something this way rather than that way. That woman needs to be straight-jacketed. I'm not sure what I'll do when I get her again, which I'm sure is inevitable. Maybe I'll tell her she...SHOULD CALM THE F*CK DOWN.

In other news, we're off to the Okanagan on Sunday to spend some time on Idabel Lake. As I pack, I realize I'm getting increasingly weird.

Anything to declare m'am?

Um, just some cauliflower sauteed in tumeric for its tumour-fighting qualities, a dozen "energy" muffins made with spelt flour (because gluten makes me feel bloated), ten stewed prunes to accompany my probiotic yogurt, oh, and one wine glass because I don't like drinking out of plastic ones.


Yep, total nutter.

Thursday, July 23, 2009

Round Four


Man, I just can't crack 100.

My blood work remains stable but I still haven't been able to push my hemoglobin into the triple digits. It's been holding steady at 97 though, so I'm not complaining. Well, actually I am, but just ignore me.

Tomorrow, I will have my fourth dose of SGN-35, the last cycle before I have my next PET scan on August 10th. As my CT scan after cycle 2 was "mixed," I am very interested to find out where the disease is at in terms of activity which is what the PET scan will measure.

Of course, I am very hopeful that the scan will, by now, indicate significant improvement. I can then continue on the trial which has, thus far, given me very few side effects.

While the wait for it was long, I'm so glad I've been able to finally have a go with this drug and experience feeling so much better. I have several friends out there who are anxiously waiting for access to SGN-35 and I want the show on the road pronto for them too.

Fingers crossed, guys.

Thursday, July 16, 2009

Round and Round


Well, that was interesting.

Tonight I spent the evening drawing circles.

Circles, you ask?

Yes, circles, the round kind.

My mom and I went to a workshop called "A Circle for Difficult Times" led by a Zen artist and teacher visiting Vancouver. While I appreciated the meditative quality of spending several hours drawing circles, the idea of taking fastidious notes on "circle making" (which some were inclined to do) kept giving me the giggles.

The tranquility of the evening did, however, seem an appropriate ending to a day that began with a lymphatic massage, followed by a sound meditation and healing-touch session (during which I drooled on the pillow), followed by a nap (during which I drooled on the pillow again).

Clearly, I am not getting enough rest.

Tuesday, July 14, 2009

Lately

Thought I'd post a few recent pics rather than writing...

Guess where this is...


Looking south from Point Roberts toward the San Juan Islands


This is the new marine park there at Lily Point


Now we're on the west side of PR looking at Lily Point in the distance. If you click on the picture and look to the right, you can see a very faint Mount Baker on the horizon.


Ian trying to photograph a very unphotogenic Finnegan.


Me trying to be creative...


Our new project...attempting to restore a '92 Boston Whaler.


Pressure washing is very satisfying...look at all that dirt!


All clean...


Making s'mores. I dropped about three marshmallows into the fire.


Finnegan unhappy to be stuck on the log, but he kept eating dead starfish so we had to do something.


Writing on Bowen Island.


Ian on our half-finished deck.


Our new roofless shed (we really need to complete something).


Speaking at the Callanish Garden party. There were no pictures where my mouth didn't look weird.

Sunday, July 12, 2009

Hangin'

Well, after sulking briefly over my underwhelming CT results, I got back to the business of enjoying the return of my energy. How wonderful it is, too, to not be itching like a kid with head lice.

Last Friday, my third dose of SGN-35 was delivered without incident by a sane nurse who didn't feel the need to chastise me. She also got the IV in my hand without my feeling so much as a pin prick, which proves how important competency is. Nurse Ratched, you may want to take note.

During my infusion, I began talking to a woman beside me named Ruth Anne. She was busy knitting a six-foot Prayer Shawl for her friend who was also there receiving treatment. I'd never heard of the idea before, so she told me the history behind the project.

Now undertaken by people of many different faiths and beliefs, the shawl maker begins with prayers and blessings for the recipient and holds these intentions throughout the creation of the shawl. Upon completion, a final blessing is offered before the shawl is sent on its way to "wrap, enfold, comfort, cover, and give solace" to its recipient.

What a beautiful concept.

Friday, July 03, 2009

On We Go

Ok, so, I still don't have a complete picture of what my recent CT revealed as all my go-to people are away.

However, the results are good enough to continue on the trial and, really, at this point, that's all I care about. I will have my third dose of SGN-35 this afternoon.

Apparently, in terms of the size of the various areas of disease, there were only minor changes, some slight increases and some decreases. Initially, I felt disappointed with these results as it was really hard to imagine that such a dramatic improvement in my physical symptoms would not coincide with an equally significant decrease in disease.

Regardless, these are still early days so I like to think that the Hodgkin's is indeed suffering a slow and painful death...(followed by a not-so-pleasant descent into Hell).

Shame about them flames.