Wiggin' Out

I have begun wearing a wig as I go out and about. I like it. It looks good, or at least everyone tells me so. Losing the hair was a bit freaky at first. Most people just shave the head as soon as the hair starts to fall out. I have continued to collect bits and pieces of hair to make the halo gizmo I plan to construct (this described in previous post). Meanwhile, I also have lots of hats and am enjoying wearing them. As weird as this sounds, I prefer to be a participant in the process of the hair loss; I will sit in the backyard and run my fingers through my hair pulling out handfuls. I prefer not to hide from what is happening.

It's a fascinating process.... this observing of the "killing" off of cells in the body. The hair loss is proof that something awful is happening. It is also proof that something wonderful might be happening: the killing off of the cancer cells. A Tale of Two Cities: it was the best of times, it was the worst of times. Again with the ying and the yang.

Tomorrow I start the second 3-week round of chemo treatment. I have enjoyed having a week off -- accomplishing much and feeling pretty good. Knowing that after three upcoming weeks of hell, there will be a respite will make those three weeks a bit more tolerable, I think.

I hope.

Ying Yang

Good often follows bad. Bad is countered eventually by good.

Every cloud has a silver lining.

There is no joy without sorrow.

Everything is relative.

You've heard all of these. It's the Ying and the Yang. The up and the down. The happy and the sad.

Hop on board the canoe, chuck the oars, and sooner or later the river will carry you to the good, the bad, the ugly, and the beautiful.

A couple of days ago I felt like hell. Today was terrific. No nausea, no dizziness, no fatigue. Since my hair is still exiting the premises, however, I decided to take advantage of my good physical condition to go hat shopping. I headed to Kohl's where, of course, there is ALWAYS a sale going on. I went a little crazy and bought four hats: two straw, one blue canvas and one very floppy lightweight cotton.

That is all. Just thought it would be nice to issue a positive report. Yay.

Sheddin' like a Dawg......

on a hot summer day.

Hair coming out fairly rapidly. I had to play a funeral gig this a.m. Thought about making a debut appearance with new wig, but decided I was presentable enough with short and thinning locks.

This afternoon I had two piano students and, for first time, I really had to fight to maintain the patience to teach. The fatigue is heavy. I ate dinner but had to force it down; am now fighting waves of nausea.

Weird. Yesterday I thought I was feeling ok despite dizziness. Today it's like I'm being hit with a sledgehammer.

I take some consolation in the thought that the same agony I am experiencing is being felt by all of those rogue and nasty cancer cells inside my body. Remember that old Raid commercial? The one where the roaches are running around in terror and yelling "RAID!!"? I sort of enjoy picturing that scene happening inside my body. Only they're yelling, CHEMO!! Run for your life!

Trust me... if those pesky little cancer cells are feeling like I am starting to feel...then maybe this stuff is working. Gotta hope so.

Surviving first Round of Chemo

I have made it now through the first 3-week phase of chemo plus study drug. First two weeks not so bad. But after the third infusion (last Wednesday, June 8), the beast started rearing its ugly head. In addition to the Benadryl stupor and the steroid face swelling, I began to experience extreme dizziness. I think this is what many patients refer to as "chemo brain fog." It is a sense of vertigo, almost feeling drunk or high on something... sort of disconnected and out-of-body; it is at times accompanied by an overwhelming fatigue. I can still function my daily activities, but find that I just need to sit and relax with great frequency. And I do just that.

Yesterday I noticed that hair loss was beginning to occur. Today it was even more dramatic. This was my trigger to give myself a haircut; it is thought that hair loss is less noticeable when the hair is short. As I trimmed, I preserved many longer locks of hair to later create something called a "halo." This is an elastic headband on which is sewn snippets of hair to create the "illusion" of having hair under a hat or cap. Not sure how this will fly, but I am going to give it a try. Meanwhile, have wig - will travel. And I have found a pattern for a crocheted sunhat; am enjoying creating this in a variety of colors.

This coming week marks a break from treatment. So it's 3 weeks on, 1 week off. I am very much looking forward to this 7-day respite.

Thanks, as usual, to so many of you who have sent cards and emails and FB messages of support. It is great to have a squadron of cheerleaders. My friend Mark Rossman wrote this gem: "Stay strong. Stay tough. Be mean. Attitude wins the day." Yup, works for me!

Wig Room, Week 2

I have now completed two rounds of IV chemo and 6 doses of trial drug. After the first round, I felt ok. Any nausea that I felt was quite mild, nothing worse than I had experienced on previous chemo drug.

Today marked Day #3 after second infusion treatment, administered June 1. I can definitely say that I am feeling the effects today. I have been quite dizzy and "loopy" all morning and I am experiencing stomach upset and some nausea. It feels strange to have no appetite and yet to hear my stomach grumbling for food. In spite of feeling bouts of mild nausea and dizziness, I decided to force myself to consume a healthy and substantial lunch. So far, so good. I do have anti-nausea meds and will take them if need be.

So far no loss of hair. But it's still early in the game.

My biggest problem is still a chronic cough, exacerbated by talking and attempting to sing (which I did too much of yesterday at a church gig). By the end of a typical day, I am exhausted from coughing. My oncologist is hopeful that the steroids I am being given in my pre-chemo cocktail infusion might help alleviate the cough; so far, this has not been the case. No one seems to be able to get to the cause of the cough; my doctor wonders if it might have something to do with the cancer (lymph?), but nothing has shown up on scans or x-rays. Meanwhile, I avoid conversations with people, either on the phone or in person -- the coughing is an embarrassing annoyance. And of course, not being able to sing is a huge deficit in my life.

Meanwhile, I try to find joy wherever I can.

 I saw my first goldfinch feeding at a new bird feeder outside my dining room window this afternoon. Beautiful.

I also bought some new "sexy" silver shoes to wear to my niece Jessa's upcoming wedding.

Pretty birds and pretty footwear -- hallmarks of the day.  :-)

Lab Rat in the Wig Room

First, let us define the "wig room." It is that mysterious place where I have seen patients entering and exiting when I am in the oncologist's waiting room. It is where chemotherapy is administered via IV.  It is that place from whence come stories abounding in the horrors of chemo: hair loss, nausea, fatigue, etc. People come and go from the wig room with various forms of head-gear to hide that trademark of chemo: loss of hair.

The Wig Room is a place I have been trying to avoid. But today I joined the ranks of IV chemo users.

How on earth did this happen? I had been on Afinitor since January (see previous post). And although results were not showing much advancement of the cancer, not much was happening in the way of improvement (according to a scan in early April). Also, blood work, although not getting worse, was getting better only in small increments.

My oncologist knows how I feel about full-body chemo; she knows I have been trying to avoid it. I think she was a bit astonished when I was the one expressing an interest in finding something stronger. I recall using that age-old adage, "Doctor, I think it's time to shit or get off the pot. What do you think?"

She then took the lead and offered me three options: 1)chemo in pill form, 2) full-body IV chemo with a once-a-month triple dose, or 3) full-body chemo more spread out in once-a-week-for-3-weeks cycles. I opted for #3. I felt that the pill option would not be potent enough, similar to the Afinitor I had been on. And although the triple-dose IV would mean fewer visits to the Wig Room, the full-body damage would be pretty extreme.

Then the doc sweetened the pot by offering to put me on a new experimental research study. A new chemo drug (in pill form), Alisertib, is being studied to see if it boosts the effects of the IV chemo (Paclitaxel). The study is randomized, with some patients taking only the IV chemo and some taking it in combo with Alisertib. Today I found out that I am one of the study patients who will be taking both chemotherapies. This might mean an increase in side effects; just not sure. But I am very happy to get the opportunity to be taking this added drug; initial studies have found it to be very effective.

Today was Day One in the Wig Room. Prior to the chemo IV, I was given anti-nausea med, steroid, and Benadryl in IV form. Before the pre-chemo cocktail was even finished, I could feel the effects of the Benadryl; I was super sleepy. I have remained pretty groggy all day; really had to rally my brain to teach piano students. But otherwise, I am feeling ok so far. Appetite, although somewhat suppressed, is ok. No puking, no nausea. I am told that the third day more side effects might appear as the anti-nausea and steroid meds where off. We shall see.

So I am now the Lab Rat in the Wig Room. I am trying to approach all of this like a Taoist. Although I am not driving the bus, I am going to do my best to enjoy the ride. Am working on adjusting my thinking.... just trying to approach all of this with a cheerful heart. I believe it was Wayne Dyer who said "Change the way you look at things, and the things you look at change." Now, ain't THAT a little pearl of wisdom?

Coasting

I have not posted to the blog in a long time.... simply because there hasn't been much to report.
I have been taking the chemo drug Afinitor. Side effects are not debilitating. Stomach pain has been alleviated with probiotics (fermented sauerkraut). I have had occasional days of low-grade fever, feeling loopy with accompanying headaches. But over all, I am tolerating the drug pretty well.

The last two visits to the oncologist have shown blood cancer markers to be slightly elevated, which is generally not a good thing. My doctor was not alarmed by this the first time. But after the second elevation, another scan was ordered; this occurred last Wednesday, April 6.

I have not met with the doctor to go over the scan report in detail. But in a brief phone conversation, she said that the scan revealed very little change since the last scan (late December). There has been no improvement (that is, no reduction in cancer); and there is one additional "shadow" found in the upper part of the breast where the cancer originated. The recommendation was that I should just keep taking the Afinitor, with a "wait-and-see" attitude.

So I am coasting. No longer driving the bus. The driver appears to have put the engine into neutral.

I have stopped singing, since the chronic cough I have had for almost a year affects my ability to sustain good vocal quality. No one seems to know what the cough is all about. I have been to an ENT doc, a pulmonologist, taken steroids and inhalers and antibiotics. Even my oncologist, wondering if it was related to the cancer, ordered scans of chest and lungs. Nothing found.

I suppose the fact that the cancer is not overtaking me and spreading like wildfire is a good thing. But it's still there. I try to keep my daily routine as normal as possible. Still teaching piano, still playing church gigs. Living "in the moment" is the best survival tactic.