True Stories

Yesterday was pre-chemo prep day at the Cancer Agency.

It started off well--albeit early:

9 am: lab work. Praised the nurse doing the "poke" saying that she had a gentle touch and it was appreciated and adding that there are people who are really bad at it and they always blame the patient. She said I had made her day.

10:30 am which turned out to be 11:30 am: appointment with my oncologist, Dr. Karen Gelmon. Zipped through a long list of questions. I need to take a moment to praise Karen yet again. I had emailed Karen two weeks ago with my concerns about the neuropathy that was developing in my feet and hands. She responded saying that she might consider reducing the dose of the Taxol, the chemo that is known to give that side effect, though not usually so early into the chemo protocol. I sent Karen an email detailing all of the chemo side-effects that I had had in the nine days following dose #2. It was a very long email. I told Karen that I was very interested in having the dose lowered so long as it would not compromise the efficacy of the chemo cocktail. As I said in a previous post, neuropathy can be permanent and the long-term realities of living with neuropathy made me feel sick-at-heart. So...in our meeting yesterday Karen said that she was going to lower the dose by 25% partly because I have lost weight and partly because from my symptoms it was clear that the dose was too high. As a bit of an aside, I happened to do something very smart, which was to jot down imy smymptoms n my Moleskine every day...just a word or two. That allowed me to whip off an accurate list to my oncologist. If I had not done that and had just walked into my oncologist's office having no sense of reflection of the first ten days following chemo I would not even have remembered how brutal it was. Because yesterday morning I looked and felt great and who wants to remember when one didn't? One other item on my list was the notion that I could try icing my hands during the Taxol IV (about 3 hours of the 7 1/2 hours). When I had read through all the literature of the three chemo drugs that I am taking, it was the possibility of peripheral neuropathy that worried me. Jewellery designers need to be able to feel their hands. Mothers and dog owners, ideally, able to feel their feet and are able to walk without a cane, not to mention ride bikes, ski and do whatever else it is the family is up for. So...I started asking everyone who I was coming in contact with about how I might prevent peripheral neuropathy. I asked my beloved TCM, Sunny Lee, who reassured me that accupuncture can be quite effective in alleviating neuropathy, especially if you receive treatments right when it begins. I read in some breast cancer forum that someone had received ice gloves when they were receiving Taxotere which is a sister drug to Taxol.I asked my brilliant physio Judy Russell what she thought of the idea of icing the hands and she said she could see how the ice would constrict the blood vessels and that could minimize the amount of chemo that the hands would "take up." I forgot to ask Karen Gelmon both times that I met with her just before doses #1 and #2. I did ask the chemo nurses just prior to each dose. The first time I was told that it was just done with Taxotere and that it was just done to try to stop people's nails from blackening and falling out (lovely) and that it had nothing to do with preventing neuropathy. The second time my initial nurse said "can't hurt to try" but then went off shift and I felt like it was too busy to try to pull it off. In yesterday's appoinmtment with Karen I finally remembered to ask her about trying the icing and she was completely open to it and wrote down a req for the chemo nurses to do that.

12:15 pm: Anti-nausea wonder drug prescription needed to be filled and a very quick inhale of some lunch before getting back for:

1 pm: Pamidronate IV on the 6th floor of the Cancer Agency: The first sign that things were going downhill was that my chart was lost even though they had been trying to get it for hours, anticipating a problem with the tight turnaround between my oncologist's appointment and my IV. A nurse who I had not had before and who shall remain nameless...actually let's call her "I"...said she would just start me with a saline drip so we were good to go once my chart arrived.

She warmed up my hand--standard procedure--and then sterilized my left hand and as she was about to insert the needle I closed my eyes and went to my happy place. I could feel something was wrong right away. She was too gentle and too hesitant and it did not go in. By now my eyes were open and I was cross. "That really hurt," I said and added that it was the second time that the first try didn't work. She blamed it on my veins...that they look good but they are short and the one that she had tried had an obstruction. She started the process again, re-warming my hand. When she sat down to do it again, I asked her how the other vein looked. "I will not do this a third time," I said "how about if you ask another nurse to do it." "Oh no, no need," she said and sure enough the second one went in no problem and I asked for my warm flannel blankie, an extra pillow for my head and started to do some reading "homework" I had.

About 30 minutes later another patient entered the room...he was a very sweet and smilely elderly Asian man. He spoke English with a very thick accent but fortunately the nurse also spoke Cantonese so there was no problem for them to communicate. She started the hand-warming process with him. I closed my eyes for a few minutes and when I opened them I saw the tell-tale white guaze with clear tape on his arm indicating that she had screwed up her first try with him as well. She shot me a look and I returned it with the thought bubble "You are so busted!" She called for another nurse to come and do the second try, yelling out of the room "His vein collapsed." The other nurse said that she would be right there but "I" for some reason...trying to prove to herself that she wasn't inept?...or trying to prove to me that she wasn't inept?...she did the second try herself. And again, through no fault of her own...because this sweet and still-smiling gentleman's veins were so bad, her second try had not worked either. As the competent nurse walks in, let's call her "C" there is all sorts of laughter...ha ha ha...your veins are so bad....ha ha ha...just think of hoses...as if the problem was what this man was thinking about when the nurse had been trying to insert the IV...this man who could not have been more relaxed, or patient, or accomodating. Third time lucky. No problem. The gentleman made a joke about how there was no problem when the pretty young one did the IV and ha ha ha weren't the two nurses laughing. "I" made a comment about how she had been able to put the needle into this man the last time he was in as if she thought she should get an award of merit for being able to have done her job. No award today honey.

"I" left the room and did not return until my IV was done. Usually whenever a nurse is going to leave the room, one of the patients is handed the call button and instructed to push it if anyone needs anything. "I" did not do this. The sweetheart and I had a chat. I had to pay very careful attention to decipher what he was saying...he was really just dear...75 he wanted me to know...and would have chatted the entire time but I was pooped and told him I was going to have a little nap and he said that he would too.

"I" came back just as my IV was finishing and tried to make small talk with me. I just couldn't. I asked her as calmly as I could if she had noted in my chart that my hand should not be used. "No," you can just tell the nurses. "What if I forget?" I asked. Then I added "Do you note how many times you poke someone?" "Oh yes" she said. She starts trying to defend what had happened earlier and I just let loose "No one should ever have to be poked three times!" I spat out. "Oh no," she said "that never happens." "It happened to that lovely man, just now!" I said and started to rant: "It's not okay for you to be laughing while you are hurting people. Do you have any idea what your patients are all going through? The chemo, the blood work, the extra IV's? It is not okay to be casual about it. Try putting yourself in our shoes. Imagine that it is you in the chair and the nurse can't get your vein and hurts you!" By this point I am shaking and there is blood spurting out of where she had just took out the needle. She grabbed my hand and cleaned it off and offered to help me gather my belongings. I declined. As she walked away she asked the lovely gentleman how he was doing, if he needed anything and offered him some juice, which he accepted.

As I was leaving I looked him in the eye and said "Take Care" and added that I had really enjoyed my chat with such a good-looking man. He laughed so hard and said that it was a long time since a woman had said that to him. I said that there's no telling where you're going to meet a great guy, and walked out of the IV room and left the building.

3:30 pm: Stopped off for groceries on my way home. Just as I approached the exterior of Whole Foods my eye caught all of the tulips displayed and I decided that that was just the pick-me-up that I needed. Just as I was closing in on which I wanted, a woman came out of the store and plunked down a gorgeous bouquet of pink-and-green-hued parrot tulips, pink tulips and grasses back into the display bucket.

"Oh, those are gorgeous," I exclaimed. The woman replied "$14.99! And these ones" pointing to some plain-jane small big-yawn tulips "are 3 bunches for $10. "Yeah" I said "but these are spectacular and those are boring" and started to reach for the bouquet that she had decided against. In a flash of an second, this woman swooped her arm past mine and pick back up the bouquet saying "I'm going to get these after all." I started to laugh and said "I guess I talked you back into them. I was going to buy them." She turned to look at me full-on and said with a straight face and apparently a very short-term memory "I picked these out very carefully. These are mine." "Bbbbut," I stammered "you put them back. You decided against them because they were more expensive than the other ones." Clutching very tightly to her bouquet, she said "Oh I'm sure we can find you something else...oh look these ones are nice." "I can take care of myself." I said and she retorted "I'm sure you can!" and stormed off.

I finished up my shopping...trying to think of healthy and yummy food that would work for me post-chemo and then got in the car. The radio was set to CBC and the host of the afternoon show was mid-interview with a young man who was describing how his one-man was developed. He was describing how cathartic it had been for him and was also for the audience...to be able to laugh at ....cancer....I listened intently trying to catch the gist of the theatre piece and the name of it. This guy literally plays cancer in a piece entitled "This Is Cancer?" Audience members get to participate, yelling and laughing, at what to most would be the worst-thing-imaginable-to-have-happen to me/someone I love....For the record, there are way worse things. I took my tuning into that interview to be a sign that I should remember not to take any of what had just happened to seriously. After all, there was no need to stew about anything. I had handled it in the moment and I get to cathart in today's blog posting.

http://www.vancouver2010.com/en/culture-and-education/cultural-festival-and-events/event-listings/-/57622/34048/10j94hk/this-is-cancer.html

I took my tuning into that interview to be a sign that I should remember not to take any of what had just happened to seriously. After all, there was no need to stew about anything. I had handled it in the moment and I get to cathart in today's blog posting. I got home and went straight to bed after apologizing to a friend for not calling her in what was supposed to be the window between appoinments earlier in the day. Kelly made a surprise visit and I sat and drank green tea in my flannel bathrobe and my beloved grey hat (a gift from someone on the Callanish retreat who thought that I would need a cozy hat for my newly bald head) and laughed and laughed and laughed.