The Mind: A Fabulous and Fearsome Thing to Watch

I was jarred awake. Mind still thick and groggy from what clearly was not a lengthy enough time passage from last night's lights out. Something was terribly wrong. I did a body scan. Was it the fact that my breathing is already a bit crackly and wheezy even though I just had fluid drained from my lungs on Monday? No. Was it the pressure building from still-too-much-but-not-enough-to-do-anything-about-it amount of fluid in my abdomen? No. Then I remembered,the poorly timed--i.e. just before bed--research that I had done about the chemo that I'm going to be taking as and when I get my start date (another blog, another day). Yes. The "problem" as it so often is was with the mind.

I'll speed-reverse back to the beginning of the day to fill you in. As always, before I go to appointments at the Cancer Agency, I spent a bit of time thinking about what I wanted to wear. My goal over the years is to not look like someone who is sick and has cancer but today called for something else--the inaugural wearing of my new hat--a Solstice gift from Kelly. I even managed amidst the morning mayhem to email Kelly the picture so that she could participate vicariously.

Kids off to school, I set off for my double-header day at the Agency. An IV of Pamidronate to keep my bones happy and an appointment with my oncologist. I had my usual lucky parking karma and as I plugged the meter I met the gaze of a middle-aged guy who had just navigated himself from car to wheelchair and who clearly was headed to the same location as I was. He took one look at my hat and was transformed from a crouched-over man mired in the challenges he was facing to a vibrantly alive, handsome guy. He flashed me a mega-watt smile which I did my best to return.

"This hat has seriously fun possibilities," I decided as I walked--with a bit of a jaunt--into the Clinic. First stop, top floor to the chemo and IV zone. I had been here once before and had been completely traumatized by the experience. In maybe a dozen rooms, all with their doors open, people in varying degrees of health, receive their medications or blood transfusions. Some people are clearly very, very ill and in pain. It is hard to see and harder still not to take on some of their suffering. The first time I asked to have my chair turned around so that I could look out over False Creek and the North Shore mountains rather than at my room-mates. This time though I was better prepared: water, green tea, rescue remedy and an IPOD chock-full of the latest "Q" podcasts and "The Daily Show." My room-mates were very pleasant...a chatty Brit who had a friend along and a woman who was clearly not feeling that well. An uneventful, even restful 90 minutes were spent, the last 25 of which with me trying to stifle my giggles as I watched my comedic hero, Jon Stewart.

So why was the first experience on the chemo floor so intense that my oncologist put me on oral pills so that I didn't need to have monthly IV's and then today's experience be so different? It's still the same place, still full of very ill people. The only thing that has changed is me or I should say, my state of mind. And of course with a different state of mind I noticed different things, how lovely all of the nurses were, including the one whom I asked to do some sleuthing about why I was not yet showing up in their system with a chemo start date and the lovely way that both my room-mates looked me in the eye as I left and wished me "Good Luck."

I am choosing that I want to have the IV and I have chosen that I want to have the chemo. It is no longer the boogey-man in the closet, the horror of horrors. I have changed my mind and because of that my experience is/will be/could be completely different.

Next stop, second floor, the large waiting room for patients with appointments to see their medical oncologists. Again, for years, I found being in this room to be traumatic. Almost always I would be the youngest person in the waiting room and I would sit therethinking--amidst a crowd of people with a wide array of creative attempts to cover up their chemo-induced baldness--"I don't belong here. I don't belong here. I don't belong here." Today though I just walk in, sit down and pull out my knitting. Klick-klack-klick-klack. I've just discovered that pulling out knitting is just as effective as lighting a cigarette at a busstop (just for the record I haven't smoked in over 20 years) and sure enough mid-first row of knit one, purl one, I was called in.

Karen came in after a bit of a lag and commented on how well I was looking. I had just seen her 5 days before and as well as having the chemo conversation with me she had put me on thyroid medication as my blood work indicated that it was really not working properly and that this would at least partially explain why I had been feeling really blue and low-energy in the fall. I agreed that I was feeling really good. "I'm at my best for some reason when I face adversity. It get's me all feisty and full-of-life." She asked me if I was feeling creative and thinking to the starting of this blog and the jewellery designing I've been doing and planning and, I said "Yes." We talked about how artists often describe happy events such as a new love relationship as being problematic for their art. We laughed at how messed up that it is and I said with my audaciously hopeful state of mind that perhaps it was possible to hang onto the creativity without needing the angst and that I looked forward to investigating that possibility post-chemo.

Karen went on to say that she had me on the wait-list as urgent but that she still did not know when I could start. I pulled out my list of questions and reviewed with her what she had given me as my chemo options. I had originally chosen one drug--Taxotere--to be administered every three weeks but in doing some more research wondered if I should reconsider and take a sister drug--Taxol--once every week. I told her that I was almost as scared of the steroid drug that is administered prior to the chemo to try to alleviate allergic reactions, nausea and inflammation. The contra-indications read like a carbon copy of my family medical history and I was concerned. Karen said that the efficacy of the two are essentially identical. Some people find that coming in less often preferable she explained but the up side of the weekly treatments is that they are less toxic as you receive a smaller dose and therefore don't have as strong side effects. When I added my concerns about taking a lot of steroid medication she explained that with the weekly dose I would take much less and we agreed that was the way to go. I asked with the weekly dose when I would feel the worst and she said about Day 2 or 3 but and started to say something else. Mid-sentence she stopped herself and as she left the room that I was going to do great. I knew that she was helping me to manage my mind and I replied that good as that sounds that I needed to be prepared for anything and to line up support just in case.

The rest of the day was happy and uneventful. As I've been doing lately I got to bed as quickly as I could, the kids joining me to hang out for a while and me being the first one to go to sleep...except that I didn't. I thought to myself...I'll just take a quick peek on the computer and read up on Taxol so that I'm prepared for any side effects there might be.

I ended up on a site where women who have taken Taxol have posted their experiences with the drug, here's a glimpse:

"I would start feeling sick the day after I got it, and this sick feeling would last about 5 days, and then I would recover day 6 and 7, and then it was time for the next dose. I got severe fatigue that felt like a horrible flu, very serious weakness, digestion problems, acid reflux, diarrhea, lost menstrual cycles after 4 weeks, some mild tinging in toes and hands. Some itching. At the end, serious muscle and joint stiffness - that felt weird and annoying. A lot of taste distortion and lack of appetite sometimes."

"I have not had any of the normal side effects - no nausea, fatigue, body aches. I work 32+ hrs. a week (75% on my feet)and have not missed a day of work. I take myself to and from treatments. My treatment effectiveness is being monitored by CT scans and CA125 blood tests for tumor markers. Both show my tumors are rapidly shrinking. I was determined not to let Taxol get the better of me."

"Numbness in feet and hands, joint pain, short term memory loss, confusion, can't add or subtract although I was a math whiz before Taxol. I was sick. After a year of being off Taxol, I still have numb feet and hands, confusion, no short term memory, can't talk many days, I feel like a complete idiot. Taxol was a high price to pay for my life."

"I am now 2-1/2 months into treatment. Side effects are predictable. Day 2,3,4 post treatment some fatique, loss of hair, including nasal lining, I always had osteoarthritis so I can not attribute joint & muscle pain to taxol. Taxol was prescibed as pallative, but I now am almost normal, scan show the cancer has stopped progressing and bone mass in regenerating."

"I suppose since Taxol saved my life I have that to be thankful for, but the side effects are devastating. My neuropathy is getting worse as time goes on and I'm 5 months post chemo. I have had to change positions at my job to a desk job from a job that I was on my feet all day. I'm 45 and feel like a 90 yr old woman. My quality of life sucks!!!!

"The side effects quite predictable.Day one and 2 fine, symptoms appeared on day 3 lasting 4 to 5 days. Numbness in feet,hands constantly.Each session it seems more pronounced.Red face on day 2 and body rash for a few days.A HUGE amount of pain throughout body FOR A GOOD 4 TO 5 DAYS.Knees and hands of late have permanent discomfort.Joints in hands feel arthritic and are swollen. My CA125 LEVELS HAVE DROPPED PROMISINGLY WELL.Have had 6 Taxol sessions every 3 weeks and started another set of 3 every 4 weeks.Last one in 3 weeks time.Hair loss, but fabulous wigs to be found.Eyebrow and eyelash loss.Chest pains on 8th dose of Taxol.Nauseous each time but abated with drugs,Tastes different.Tiredness.Have found excercise( walking)as soon after as possible improves my condition. Wonder if I will ever get feeling in my extremities again?"

"Mostly just a little tired the day of and after taking Taxol. Very little nausea. At the end of the treatments however, I experienced severe leg cramps, and neuropathy in hands and feet."

"Fatigue was the only important one; one day mostly in bed for each weekly cycle. My hair fell out, but who cares? None of the nausea/vomiting I've experienced with other chemo drugs. No peripheral neuropathy. Only very mild and occasional joint pain."

Clearly this was not the best thing to ingest right before bed. It explains the sudden wake up in the middle of the night. It makes me feel shaky. How can a jewellery designer work with numb fingers? I was psyched up for whatever lousy symptoms I might have during treatment but symptoms that keep getting worse after treatment? I hadn't even contemplated that. Can I just be like the woman who decided not to let Taxol get the better of her and sail through? Clearly that's the mind-set of my oncologist and naturopath. Is it that easy? Here I am ...writing in the middle of the night...with the rest of the household sound asleep...all alone with my mind. How do I want to frame this foray into the unknown? Will I apply the principles that I have studied and practiced with my spiritual mentor Lalitha for over a dozen years? Will I just observe what my mind is wanting to do with these women's accounts and not get hooked into what-if hysteria? Will I give in to fear? Will I remember how resourceful I am at finding the help I need when I need it? Will I stop these machinations, turn out the light and go back to sleep for a couple hours so that I'm not a complete wreck for the rest of the day? Yes.

I just have one last thing to say: Fuck Cancer.