Some thoughts on hair

Today I am sitting in a chair at the Ricky Knowles Hair and Wellness. My long blond wig sits on the floor is a red and black bag. It was only four months ago that I ceremoniously took it off the desk in my bedroom and placed in box on the top shelf of my closet. “Done,” I thought. This long blond wig would only be used for Halloween. But of course, plans do not always unfold in the way that we think. Scarcely a month after I had deemed myself “safe” from a recurrence; I began to spot. Just a little, not much, “Maybe,” I thought,” it’s just dryness.” It continued and then one day it was more. Anxious, I made an appointment with my doctor.

The recurrence was a mere eleven months after I had joyfully rung the bell, celebrating the end of chemo and the beginning of life in remission. Eleven months was not long enough; but it was what I was given.

So here I am again, recovered from a second successful surgery, one round of chemo down. Again, we are hopeful, again we hope the chemo will knock any remaining remnants of this dreadful disease from my body.

Today my thoughts are more, “here we go again, no more hair.” It’s not fallen out yet…but soon. For those of you who do not know, hair begins to fall out somewhere between 14 and 19 days after the first chemo. I’m at day 14. I still have hair. But, for the last two mornings I have awakened to sore hair. That’s the best way I can describe it. Technically, I think it is my hair follicles that are tender. It’s like when you’ve had your hair pulled back in a pony tail all day and you take it the rubber band out. You’re hair feels sore; this is the same feeling. So I know, my hair is on its way out.

Honestly, I’m sad to lose my hair. It’s the tangible and visible confirmation that the cancer has not left me. I did not win the last battle as I thought I had. But, I’m ready to fight again. I’m ready to win this time, win the war not the battle. This reality is not easy to face, but face it I must.

So, I sit in the chair, sharing my story with Ricky. Asking him to cut this long blond wig in a style that looks more like what I looked like before my life was rocked with a diagnosis of cancer. He’s kind, he listens as he cuts the wig that is now on my head. He asks how I wore my hair, am I a hair tucker; that is do I tuck my hair behind my ears. Since I’ve not had hair long enough to do that in more than a year, I have to think. “Yes,” I say, “I do tuck my hair behind my ears.”

Foreign, that is the word I would use to describe the feeling of a wig on your head. I was never really comfortable with one on. I never tucked the synthetic hair of the wig behind my ears during the last bald period of my life. It did not feel normal. Ricky is cutting the hair so that I can do this. Maybe, just maybe, this time I will feel more like me with this wig on my hair. Today, this is my hope.

...and the chemo begins!

May 10, 2013

First day of chemo regimen two.  Our appointment was for 9 AM, we arrive at the Methodist Infusion Center about 20 minutes early.  At 9 we're taken back and there is no      private rooms available - it's a busy day here. We ask if when one of the private rooms becomes available -  we could have it.  "Yes, of course," they say.  The problem is, they make no note of that so there is no way to be assured that this will happen. We get settled, blood pressure, pulse and temperature are taken.  All is good, as is my blood work.  Finally, my nurse comes in, she says it will take about an hour for the chemo to be prepared.  So we wait and wait and wait.

At a little before eleven, I walk down the hall, find an empty private room and in my take control mode of operation, I basically take it.  A nurse is walking down the hall with a patient that will have infusion and is about to put her in the room when I intervene.  I ask if she will be here for most of the day, I tell her I will be.  She says no and that yes I can have the room.  Not sure what this says about me but I am thankful I have a private room and that Chuck can now work at the little table and chair that sits outside of the room. It is now 11:15am and no sign of my nurse or any chemo, not even the get ready meds like Benadryl, steroids, ain't nausea, etc. are here.  At the rate we're going I could be here until tomorrow.

The chaplain came in earlier, a nice baptist chaplain.  I, of course shared with him that I was Methodist clergy and then shared with him my directed prayer request, that the chemo will put me into long-term remission.  He prays, "Father..."  I love the Baptists!

Each private suite in the infusion center has a name.  The room I have commandeered for myself is called, "courage". Today I am thinking that patience would have been the better room for me to be in as I am running short of that at the moment.  My nurse is stressed and in the two hours that I have been here, I have only seen her twice.  Apparently there's some mix up on the doctors orders.  She just walked by my room, not looking this way, I think she may be afraid I'm going to tackle her to find out what's going on.  If it were me, I'd have been in to see me every thirty minutes or so to let me know what was going on...even if there had not been any progress.  Here is just another example of how I wish I was in control and the reality that I am not...bummer!

So here are the bright spots for today. It is pouring outside, we've been under severe weather alerts all morning.  We are up on the 21st floor and have an amazing view of Houston, our car is safely located on the sixth floor of the parking garage so it is safe from flooding and hail and we are in the Medical Center in the Methodist Out Patient Hospital that has a generator should the electricity go out.  Wearing yoga pants so I am very comfortable and have on my real comfy socks (really turquoise) so my feet are comfy, brought my own cuddly blanket that Chucks mother made for Richard and Kirk years ago (thank you Lemoine) and my favorite pillow. Oh, and the thing I love the most...warm blankets whenever you need them!

Ok time alert, it is now 11:30 and still no movement or sign of my nurse to let me know what is going on...color me frustrated!

Update:  it's noon all the meds given before the actual chemo begins have finally arrived, getting anti-nausea now, they've pushed the Pepcid and Benadryl so staying awake is a bit of a problem. Plus I've learned another bright spot: no nasty burning sensation when you push the Benadryl through the port.  Color me at the moment...thankful.

So here we go again....prayers for the chemo to put me into long term remission would be greatly appreciate. From my lips and your lips to God's ear!