Some days...you could skip

I am sitting, once again, in a hospital room at Sloan Kettering. I did not expect to be here. Somehow, I missed two key pieces of information about this procedure to get a catheter into my lung. First, I didn't know it required staying overnight. Second, they didn't tell me they were also going to replace my medi-port. Both surprises this morning. The medi-port discussion was very unsettling. Basically, the doctor was appalled at the placement of the port, said he didn't believe it was ever in the right place (instead of the migration story we were told. ). Furthermore, he said it was in a terribly dangerous location, that it could easily have shut down all the veins in my neck area, causing my head to blow up like a balloon. It was clear that he was angry this hadn't been addressed much earlier. In the past two days, I had actually been feeling some pains in my neck veins. Probably unrelated, but I sure wasn't going to say no to this. So, to back up a bit, Mom and I took a bus into the city yesterday evening. She babied me by getting chinese takeout, which we ate on my bed in the hotel room. That was fun, though I should have eaten more. I've done this no-food-or-drink-after-midnight shtick a lot lately. But this time was the worst. I woke up starving at 6 am and feeling really crappy and stayed that way. It took hours to get things underway and I think they wheeled me off to surgery at 10. Nothing for 12 hours, and I really felt miserable. I don't know why, but the drug cocktail for this procedure was not the lovely, blank, can't even remember what happened variety. I was woozy but awake as they stuck me, pushed things into me, etc. Nothing was excruciating, but all of it hurt. I counted at least 4 injections of local an aesthetic, and I heard every word the surgeon said as he told someone what he was doing to me. It seemed to last forever, but was about an hour. When they were done with me, the pain started as my lung began to expand into the space left by the fluid. The last straw was a chest X-ray, sitting up for which caused spasms of pain in my back left lung. As they wheeled me into the recovery room, I was sobbing through the corridors. I just gave up and let myself cry. A group of young workers were goofing off, a young guy singing "13 candles" and I came close to shrieking at them to shut up as I rolled by. Too awful. By the time I got there, they were obviously concerned to get me some pain meds! But I decided against the IV dilaudid. I knew they wouldn't let me eat if I took that, and that seemed intolerable. Bad call, since they didn't manage to get me even juice and crackers until hours later. Once I had eaten, they decided to give me fentanyl by IV for pain. Whoa! I started to feel the med and my pulse and blood pressure dropped. I was dizzy, nauseous, losing it. I'm amazed by how utterly deadpan both the nurse and doc in managed to remain, as they increased my fluids, lowered my head and discussed giving me a stimulant. All the time, the phrase "oops. I think we just killed the patient" was going through my head in a kind of loopy way. My poor mom, watching my lips get white, hearing all of this, knowing, as I did that this was NOT GOOD, rubbed my hands and went along with the pretending this is not a crisis script we were all following. Anyway, the fluid did the trick and I stabilized. And it did stop the pain for a bit! They first thought it was an allergy, but saw I'd had the same drug during surgery and decided finally it was probably dehydration. After all, I'd had nothing my mouth in 14 hours and had fluid drained from my lung. Just when I was starting to think something was wrong, the pain suddenly got more manageable, I felt able to sit up, and mom brought me real food. But the next blow was when the person in charge of the drain showed up and told us they couldn't train me how to use it until tomorrow. Also, that the visiting nurse would have to come to the house for a few days afterwards. And all I could think was that Steve and I planned to leave for Phoenix tomorrow morning. Not going to happen. I do not want to delay starting treatment out there, but may be forced to let it slip by a day. Nothing to be done about that right now. I wish I has listened to Steve when he suggested doing this first might create a big delay. But I am glad to have the port fixed. So Mom was finally able to leave for a much-needed nap. They found me a room at 4 pm and wheeled me up here. The sun is streaming through the window and Dev just walked in. Things are looking up!

Why I love my cabaret class...

Just got back from cabaret class. I am enjoying it more than ever because I now sing without fear of failure. I am just beyond worrying about sounding perfect or being judged. So my friend Jill asked if I'd try singing "I will always love you" with her as a duet. When I got up to the mike, I said I'd need some time to work on it because I don't really know the song. Our director Maria wisecracked "You've got one try, Colleen, just get it right!" so I took of my baseball cap to expose my shorn head and shouted "hey, don't you know I've got freaking cancer??? Maria shot right back "God, I'm so sick of hearing about that!", so I pulled out my fake boob and threw it at her head. God, I love that class!

Bald chick with attitude!

My hair is gone.  It started falling out slowly in the past few days.  I sang last night with all my hair. That was awesome.  The voice is a little rough from the chemo, but I sang my heart out and had the feeling of being more truly relaxed and present on stage than ever. A true bucket list item.

Today, I had another chemo treatment, went to a lunch meeting, got my nails done and had my head shaved. I thought I would wait longer and, suddenly, I was ready. My regular hairdresser buzzed it very close.  But it looked really sad and awful - 5 oclock shadow on my head. Yuck! Then the salon owner, with no appointment, spend a full hour painstakingly straight-razoring my head.  He refused to charge me, even though two other clients had to wait. As I was leaving, he said "You have the perfect face for this.  Don't wear any wig or scarf, let is get a tiny bit tan and you will be beautiful just like this."  I hadn't brought anything to cover my head, so my first step was to walk to the car, head high and totally bald!

I got home and tried on a few of the scarves I bought.  I lso took them off and stared into the mirror at this strange apparation. My round Irish head - no longer distorted into an oval by clever hair styling.  My ears that stick out slightly, giving me a slightly elfin look. I look like a Bowery street fighter with pretty eyes - quite a look. 

We are all different, as we wrap ourselves around the loss of hair thing.  For me, the scarves made me feel ill, pathetic and ugly.  I started to wonder if I could really own this bald look entirely, covering up for warmth but not disguise. I had always secretly wondered if I'd have the nerve to be that bald chick with attitude.  And, guess what?  Here she is.

My son says I look intimidating, a skinhead about to kill cancer...and its family.  He also said I look transcendant, which is how I feel. Sort of a cross between UFC fighter and the dalai lama. Thanks to those of you I sent the photo to who could look beyond strangeness and see the beauty.  I feel powerful.