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

Monday, June 29, 2009

Stir It Up

Aah, we're just sitting on the newly rebuilt patio of Caffe Capanna in Point Roberts enjoying lunch and lattes.

While Point Roberts itself is usually somewhere we come to get away from it all, sometimes it's nice to check in with "civilization" via fee wireless once in a while. I also wanted to write a quick post about my scan results.

While I don't have the full picture yet, I do know that things are at least stable. I wasn't able to connect with my doctor on Friday who, very courteously, phoned to discuss the results with me. However, I was on Bowen Island in Jan's gorgeous "Secret Garden" with many dear friends to write for the day. There was no way, results or not, that I was going to interrupt that.

So, for now, I just have an email to go by (as I'd forgotten to empty my voicemail box), but will be seeing the doctor on Thursday. I could phone to get more information but, quite frankly, I'd rather just enjoy the next few days unencumbered by the details and in a state of pure summer bliss.

Happy Hour has officially been reinstated. See you on the patio.

Wednesday, June 24, 2009

The Week Ahead

Well, it is scan time tomorrow, the first since beginning the SGN-35 trial.

I am very curious as to what we will see, but am also not wanting anything less than a significant reduction in disease to "quash my vibe, man."

I have been feeling so good that the results are almost irrelevant, except that they aren't. Tomorrow's test is, however, only a CT, not a PET scan, so it won't measure actual disease activity, just size. I'm going for gold, so we'll see.

I'm also interested to know what my hemoglobin is. Having had disease-related anemia for years now, my hemoglobin has been hovering in the low to mid 80's the past few months and rarely peaks over 90. A few weeks ago, after beginning the trial, it was 94. The normal range is 120-150 and I simply can't imagine what I'd be like if it got that high. Really annoying, probably!

It will take a few days for the scan results to become available, so I will likely have to wait it out over the weekend. No matter, as on Friday we have another wonderful day of writing planned for Callanish, this time in my friend Jan's garden on Bowen Island.

Speaking of which, the Callanish Society website has just been beautifully redesigned by my friend Allison. Click here to check it out (and, yes, that is me, the giant wood nymph writing in the forest on the home page slide show). We plan to get a writing page up soon.

Beyond Friday, we will be heading down to Point Roberts again on the weekend as Ian officially begins his summer holidays (and I continue mine).

Aah, sweet freedom!

Monday, June 22, 2009

Sunshine, Swedes and Solstice

Summer is upon us!

Although, you wouldn't know it judging by the weather in Vancouver the last few days. I returned to clouds and showers after a great time out on Kalamalka Lake Saturday and wonderful visits with my sister, in-laws, and Josefine, Chad and Erik.

I also had a chance to celebrate Swedish Midsummer's Eve in Armstrong at Josefine's parents. Notice the rainbow (always a good sign...)

The table is set for pickled herring and Schnapps...Skol!

This is right before we danced around the, um, maypole...

I'm still feeling great and have loads of energy. I have a CT scan scheduled for Thursday that will indicate the current state of affairs with my body; however, I don't want to attribute too much importance to the results (unless, of course, I am in remission).

Whatever is happening, things are good.

Tuesday, June 16, 2009


Being back in the Land of the Living, I've barely had time to write.

It seems pretty clear that the SGN-35 is doing something pretty fantastic as I cannot remember when I last felt this good. The only side effect I've noticed is fatigue for about 24 hours post dosage (which I like to attribute to some ass-kicking going on in there).

Nonetheless, I got up at 5:30 this morning, full of energy and ready to take the dog for a walk. Then I remembered that Finnegan isn't actually here, but at my parents for a few days while our deck is being renovated. So while I may be losing my marbles, at least I'm full of beans.

Wanting to take advantage of this new found energy, I'm off to the Okanagan tomorrow for a few days to visit family and friends. I hear it's been above 30 degrees there lately so we hope to get out on the boat on Saturday. However, I've already been warned not to over-do it. Does that mean no slalom on the water skis? Just kidding, mom. Sort of.

Thursday, June 11, 2009

One Flew Over the Chemo Nest

OK - I guess we were due.

With all the incredible care I've been receiving lately, we knew that sooner or later we'd find ourselves confronted with a situation of some sort, you know, an angry administrator, a hopeless doctor...

Today's incident involved a nutter nurse who proved to be mildly disturbing, but oddly entertaining.

When we arrived at the Agency for my second infusion of SGN 35, we were met by one who seemed a bit flustered. Once I was settled and she began combing my arm for a good vein to place the IV, she said she hadn't decided which one she wanted to use but that whichever one it was, "it needed to work for her."

This should have been my first clue because, actually, lady, it needs to work for me.

However, feeling especially cheerful due to my new found energy, I decided to let it ride with a mere raised eyebrow cast toward my mom whose eyebrow was also on the rise.

When the nurse did finally find a vein that pleased her, it was an unusually painful poke (lots of digging around) to get the IV in. My mom, unsure at this point how I was feeling about the way things were going, asked me if it was OK.

I just don't like IV's in my hand, I said.

At that point, the nurse abruptly looked up from my arm and in a hysterical voice (and in true blame-the-patient-style) said, You should have said something. Why didn't you say anything? I can put it here or here or here. WHY DIDN'T YOU SAY SOMETHING?? YOU SHOULD HAVE SAID SOMETHING!!

I am using all caps here because she was that emphatic.

Just when I think I finally have all my strategies in place for managing difficult or surly practitioners, I was completely bewildered by this one so I just stared at her with a blank expression. This seemed to unnerve her because she then said, You're allowed to speak up you know.

Uh, lady, do you have any idea who you're talking to?

So, I smiled and said, Yes - I know.

You may be reading this and thinking, What's the big deal? However, many of you also know that once the ol' Spidey senses start tingling about a nurse or doctor's inappropriate attitude, you're usually right. So, we shouldn't have been surprised by what followed.

To make a long story short(er), we (there was another woman sitting beside me listening to this all go down) were soon joined by a third patient who was also there for chemo. She had just been transported from St. Paul's after an emergency stay and was on oxygen.

When it became clear to Nurse Ratched that this woman had not come with her pre-meds (she had irresponsibly not bought them with her, what, emergency and all) and, shamefully, had not had blood work done (due, likely, to being in a frigging ambulance), the reprimanding began. Not once. Not twice. Not even three times.

The fourth time the nurse launched into her admonishment, the woman next to me (with whom I'd been exchanging glances of total disbelief) suddenly pointed toward the door and blurted out, "Spot? Spot! There goes my dog!"

Assuming she was having some sort of drug-induced hallucination, I casually looked out the door before I realized that this patient was actually providing a diversion so ol' Wackadoo would lay off the woman on oxygen. It seemed to work because the nurse also looked out the door then gave a confused look before admitting she'd lost her train of thought.


Most impressed by the this heroic display of chemo camaraderie, I started giggling with my mom and the other women. When the nurse finally left the room a few minutes later, we again shook our heads in disbelief and exchanged guffaws.

Now, had I continued to be the recipient of this nurse's continued disrespectful behaviour, I hope I would have had the presence of mind to tell her it is not OK to talk to me that way. That it is not OK to blame or bully a patient in any circumstance, and that her communication style is extremely inappropriate and therefore not going to be tolerated.

Mind you, how it actually unfolded made for far better theatre and gave me a brief glimpse into what it would be like to reside in a mental institution.

Sunday, June 07, 2009


In other words...I'm feeling wonderful, in fact, better than I have in ages (over a year, at least). So, I was either in desperate need of some vitamin D or the SGN 35 is getting to work.

Or, it could be all the TLC my mom's given me this past while (and always, for that matter). There has been no end to what she'll do to help me feel better.

She's also become quite a chef (despite food previously being, well, perplexing) and has helped me take care of virtually every little detail in my life that, left undone, can become overwhelming very quickly. I am so grateful and proud to have her as my mother.

Happy Monday, Mom!

Thursday, June 04, 2009

No More Tears?

Well, I must be feeling better because I'm back to my wackadoo ways, ranting and raving and threatening to send hate mail to Oprah.

OK, she's not on my hit list this week; instead, it's the hosts of the asinine program, The Mom Show. I don't think it's currently broadcast in the US, but it's going to be and for those not in the know, it is touted as being to moms what Sex & the City is to the single woman. Uh, not quite ladies, you just ain't that funny. However, that is not the problem.

Recently, I've noticed the hosts, Laurie Gelman and Catherine Marion, showing up in a series of TV ads for Johnson & Johnson's baby products. They are apparently unaware that Johnson & Johnson is being urged by more than 40 organizations representing 1.7 million parents, health care providers and environmental health advocates to remove toxic ingredients from its popular baby products.

Johnson’s Baby Shampoo and other of its top-selling children’s bath products contain formaldehyde and 1,4-dioxane. Both chemicals are known to cause cancer in animals and are listed as probable human carcinogens by the US Environmental Protection Agency. A recent National Cancer Institute study further reinforces the link between formaldehyde exposure and cancer.

Johnson & Johnson is being asked to remove formaldehyde and other hazardous chemicals from its personal care products by the end of 2009. So what, pray tell, are the hosts of The Mom Show and its network Slice doing endorsing these products until they comply?

Furthermore, I feel quite certain that if you or I were being asked to endorse a product (cheezies, anyone?), we'd do a quick Google search and get the facts before hamming it up for the camera (OK, I'd still ham it up, but I'd have my facts straight).

For more info on the Johnson & Johnson campaign, click here.

Next time...Breast Cancer Barbie and, yes, unfortunately, I'm serious.

Tuesday, June 02, 2009

Blue Skies

The sun is shining and the ice cream truck is cruisin' the 'hood - things are good.

My cough is finally gone, the night sweats and itching have subsided and I am finally getting some sleep. All good signs.

Now back to that fudgesicle.