The Buzz

Well, the hair loss thing finally took its toll. While the hair was still long and curly, I cut several strands and have created a "halo," a simple elastic band on which I have sewn several strands. When I wear the band under a hat, the hair "peeks out" just like my old hair did. Quite a fake job!

Meanwhile, as the hair kept coming out in handfuls, I was looking more and more pitiful . . . like a chicken.  Truly. Feathers here, feathers there. Not pretty. So last weekend, son Nick gave me a buzz cut. Once I got over the initial shock of appearing almost bald, I concluded it doesn't look half bad. With a little make-up and some ear-rings, I look almost "old lady hot." SSssssssss!

I face-timed with the grandkids to show them my new look. They were very kind. Didn't laugh. But they did stare a bit bewilderingly. Then I gave them a hat and wig fashion show, with and without the halo.

I am working on the cough problems. Stay tuned on that score. I am seeing light at the end of that tunnel; and nope, this time, I'm pretty sure it's not a train. There are answers out there and I am finding them, thanks to a squadron of knowledgeable friends. Yayyyyy, friends! xoxox

Diane or Elmo?

My chronic cough continues to be an enigma. It is always with me, even when I am not talking. But it becomes significantly worse when I use my speaking voice.

I have begun trying to speak in my head voice (sounding a bit like Minnie Mouse or Elmo); I find that doing this helps immensely to keep from going into coughing fits. When I speak in my normal speaking voice, I sound like PBS's Diane Rehm. When I revert to head voice, I sound like a cartoon character.

Because of these cough and vocal issues, I am asking everyone to please keep up with my progress by checking in periodically to the blog instead of expecting phone updates verbally. If you access the blog on-line (and not in email digest), you should be able to subscribe at the very bottom of the blog to be alerted by email when a new post is up. I know that many simply prefer talking by phone. I find it emotionally painful to be apologizing to so many folks who want to chat with me over the phone; I simply cannot sustain a conversation without exacerbating the cough. So many have said they just want to call me and "hear my voice." That is a sweet thought. But I must remind all well-meaning friends and family that my "voice" is no more.

I would like to find the source of this cough issue. I have been to an ENT. He said everything looked fine. He ordered a sinus scan; it was clear. I have been to a pulmonologist. He is totally perplexed; had no clue what was causing the cough. I have had chest x-rays and scans; all is clear. I have been on steroids, inhalers, and allergy meds; no relief. I take homeopathic and pharma cough meds; some relief, but minor and only temporary. It has been difficult trying to cope with this while dealing with stage-4 cancer. And now that I am on chemo, my coping capabilities are diminished. My oncologist has wondered if there are lymph issues associated with the cancer. But in essence, she is at a loss, as well. If anyone knows of a really competent (!) vocal / bronchial expert, I would appreciate any names. It is quite possible I have done some damage to my vocal cords; might explain why my speaking voice is terrible but my head voice (not as dependent on air passing over cords) is intact, both speaking and singing.

So.... if I do happen to have a conversation with any of you, know that you might hear me do a quick switch from Diane Rehm to Elmo mode. Try not to laugh too hard. And thank you for understanding.

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.  :-)