And, no, I'm not used to it yet

I did ask the hair dresser to give me a mirror so I could see my whole head. I've never seen my actual head -- as I'm sure many of you women have not either. I'm pleased to report that I have a very nice head -- no scars, lumps or birthmarks!

But seeing my bare head in the mirror isn't very appealing. Sort of Jean Luc Piccard, only with an old woman's face. Hats help quite a bit, and I've discovered that double wrapping scarves over hats or other scarves gives me the bulk that I miss without my "big hair."

One of my daughters (K), has requested that she never have to see me without a hat/scarf/covering. The other wanted to see it immediately upon me arriving home from the hair dresser's. She looked kind of sad, but didn't cry and managed to smile ruefully.

Oh, and I forgot to say that my head is now all velcro-like! Some of the hair is still hanging in there and so I have a lot of little spikees on my head. I can feel them under my hats, catching on the fabric. That is weird. I assume that most of them will also fall out, but at least they won't be as long or as noticeable.

I know that some women get quite comfortable and walk around with their bare heads. I'm certainly not to that point right now -- in fact, I had an unpleasant vision of some kids thinking that it might be fun to snatch off my hat in church. It's also the middle of a rather cold winter here in GJ, so I can't imagine going out in the 15 degree weather without a hat.

I wonder how long it will be before I have hair again? I am guessing that it will probably take at least 2 months after the last chemo (mid February). And even then it will be a couple months before I have as much as an inch of hair. Longer? So, it will be warm weather again before I have significant hair. We'll see if "we" are able to consider going hatless when it's warm.

Hair all gone!

My friend who predicted the hair starting to fall out at 15 days was right on the money, Dec 21. I was washing my hair and thinking "Huh, a lot of hair in my fingers. Oh-oh! I know what that is!" Unfortunately, it was right in the middle of my niece's visit, right before 6:45 am surgery to have a port put in, and before a big Christmas party I was having. I just don't have time for this kind of stuff!!

So, I just put on hats and kept on going. You might think, "Well, why rush it anyway? Just keep the hair around until it really starts to look bad." But, having great handfuls of hair come off every time you brush your hair or even try to style it, is really annoying. And having all that hair in your hats and scarves is annoying too. So, after my niece left yesterday, I headed to the hairdresser's to have it shaved off. They are very nice -- you get your chemo head shaved for free!

I find it interesting that I basically feel OK about this whole thing, not really seriously freaked or scared at all, or even sad. But then as soon as I go to tell someone, like telling the hair person that I had come to get my hair shaved since it was falling out, I get all choked up. I have noticed that at other times in trying to let people know. I think this is weird and unfortunate, because it makes me seem all upset when really (REALLY) I am not.

I don't think I'm in denial here. I don't have bad dreams about this, I don't find myself daydreaming or worrying about it or even thinking about it much. I have previously noticed my own tendency to get choked up whenever I try to pass along distressing information about myself. Job loss, divorce, etc. I wonder if I'm embarrassed to admit "bad" things about myself? Maybe this is some weird pride thing happening? Any suggestions from you-all, about if that happens to you and when/why?

Side Effects Stopped After About 5 Days

I've been enjoying my new-found "normality" too much to write and tell you all I'm better! Yes, the worst of the effects are about Day 3 to Day 8. At least for the first session. Even the incontinence, hip, hip hooray! And the aching, too, and the headaches. Never did feel "nauseous" although I did feel like I had a flu stomach occasionally -- more like a clenched fist pain, if you know what I mean.

No hair loss yet. I've heard estimates from 15 days (Dec 23) to shortly after the 2nd treatment (Dec 30). My fun family bought me some hats and gathered about 100 scarves to send me! I've been getting used to wearing them, both for myself and for my friends. I wear a big hat and people look at me like "Has she lost her hair? Dare I ask?" So I assure them "So far, I'm just practicing."

I hope you all have a great holiday! The kids are home and sleeping in. I'm baking cookies by the dozens! Got my tree up and the kids decorated it! Hurray for teenagers and young adult nieces!

Ah, side effects!

Two days after the chemo treatment the side effects started. Some are now better and some aren't yet. Not sure what to expect - whether they will subside as the chemo drugs move through me, or last. I have added a couple hours of sleep each day since Thursday.

Immediately alarming was that I have become pretty darn unable to control my bladder sphincter muscle. As I said to the nurse, "It's not 'Uh oh, I need to go!' -- It's 'Oh no, I'm going!' " Another nurse who had been through chemo said, yup, that's a common side effect from Cytoxin. It's quite demoralizing, truthfully. Makes you feel like a real old person toddling around the nursing home. I girded my loins (!) and went to buy Poise.

I think another unpleasant symptom is from the shot for white blood cell support, which works on the bone marrow. It is making my knees and shins hurt. Like wake-up-in-the-middle-of-the-night ache. I've been taking Naproxen and Ibuprofen, but it doesn't seem to really make a dent. I feel like I've developed arthritis overnight. I'm really toddling around!

Not so bad is the headache that comes and goes. No worse than your garden variety headache, and doesn't effect me much. The acid stomach is also unpleasant but not that bad. It isn't nausea, but more a stomach ache. I drink a lot of water, and eat bread and crackers, which do help. I'm trying to remember to eat several small meals a day, but that just isn't my routine.

I do hear that these effects lessen the further from the treatment you get. So, hopefully they will be on the wane by middle of next week. 'Cause I got things to do! (As always....)

Feeling fine still and thinking about headware

Neither the chemo nor the shot has made me feel sick. (I did take the Claritin despite the doctor saying I should wait to see if I felt sick first. What harm is there in an unnecessary Claritin, while feeling sick for a week is a big harm). I slept well, had good dreams. I feel a bit shakey today, but not tired or sick or nauseous. Good enough to get stuff done and blog!

Everyone is now agreeing that I will definitely lose my hair and that it will start to happen sooner than I have been thinking. My oncologist, my Mesa State girlfriend who is 3 weeks ahead of me, a friend from church, and the daughter of a church lady, all are saying my hair will start to fall out about 15 days after the first treatment and be coming out in wads by 25 days.

I am torn between going in to have my head shaved as soon as the hair starts to fall out, which may be the week my niece arrives. Or waiting until after she leaves when the hair is really starting to look bad and come out in nasty ways. I am finding that I'm too attached to my hair to shave it off NOW, which some women do as a way of "taking control" of that part of their chemotherapy side effects. They view it as avoiding the pain/sadness/loss of passively watching your hair fall out. They are instead saying "I'm doing this myself, no cancer treatment is making me a victim." I can kind of relate to that feeling, but not enough at this point.

My hair has been a defining feature of my "look" pretty much all my life. As you all know, I have big hair. From high school through college ('70s) it was frizzy and wild -- an A-frame of frizzy hair down from a middle part to my shoulders. (Oddly, the same look favored by my older daughter even though there is now "product" to prevent that particular hair disaster.) In Seattle it got shorter (due to humidity) and then in Texas it became bigger and taller (due to the urge to bigger everything in Texas) and more coiffed. The Titanic movie and the Curly Girl cult of the late '90s moved me to longer, messy ringlet-curls. Grey hair cut it back to shorter curls. Now, its medium short curls dyed darkish blonde in an attempt to look younger and feel better while I job hunt, but it still gives a good 2 inches in height to the top of my head.

So, now as I experiment with scarves, that is the thing that is bothering me the most: my head looks flat. I remind myself of some primitive Neanderthal with a shortened forehead and flat cranium! Very disturbing. However, I wore one yesterday around town and to choir to get myself and my friends used to the idea. It was a dark maroon kerchief-type thing which I didn't think was very attractive, although it went with the new maroon shirt a friend gave me. Friends were actually very complimentary and a couple said I was looking better than I had for the past week. I was surprised.

Today I tried wrapping a huge fringed scarf, winding the ends up and twisting them around my head, sort of a Kaffiyeh look favored by Arab men. It's messy but acceptable, with fringe draping down one side. And warm! It's been extremely cold in Grand Junction this week -- below zero in the mornings and not above 25 all day.

I hear the American Cancer Society has wigs to try on, and ones to give you as well. There are "parties" offered by a non-profit group called "Look Good, Feel Better" (which I've unfortunately missed for the month) that show you how to tie scarves, and have a ton wigs and halos in different colors and styles to try on. (A "halo" is a goofy looking ring/tonsure of hair that shows under hats and scarves but leaves the top of your head open. Apparently wigs are itchy and hot so it's a good way to "show hair" without the whole wig irritation).

They also show you how to do make up that works well with grey-green skin! (Hopefully I'm a few months from that!) Also how to do eyebrows. I don't know if my eyebrows and eyelashes will fall out -- that's less common. I was amazed to see that there are stick-on, real-hair eyebrows! I was telling my sister that I have had "receding eyebrows" for the past several years. From whatever capricious whim of graying hair, my eyebrows have been going gray from the central nose area, moving out deeper into the eyebrow, and also along the lower edge of the brow. Since I am vain, I have been plucking those gray hairs for years, with the result that my eyebrows are now a good 1/4 inch shorter and a much finer line. Gives me a fetching, wide-eyed look, I'm telling myself. Anyway, perhaps I'll just get rid of the whole problem and go with fake eyebrows! Probably not as good a reality as a fantasy, huh? Just like wigs and false teeth and breast reduction/enhancement, etc.

Enough chat about trivia -- me and my Kaffiyeh have to get some work done before the 11 8th graders descend on the house!

First chemo done, and I feel fine!

So often, the dread of an unpleasant thing is much worse than the reality. Lately I have been getting "helpful" dire information about all the terrible things that WILL happen and how bad I WILL feel (at least, that's how they felt and so it is a universal truth). Well, none of it happened to me, today.

I had the treatment with a regular IV since I never was able to get the port in place. My nurse says I have a fabulous vein deep in my arm that will take me through all the treatments if that's what I want. I have to think about it some more. I guess I will have to get at least 7 more IVs, since I now learn that I have to go in 10 days after each treatment to get blood drawn and see how I'm doing.

I took the girls into the chemo doctor's appt with me yesterday, so she could reassure them and answer their questions. I thought the doctor did a great job. Then I took them into the chemo treatment lounge. It is a big room with lots of windows overlooking an outdoor patio with tables and plantings. There are big reclining chairs with bed tables and chairs for setting your stuff. Katie said it reminded her of the first-class section of an airplane (although the chairs are along the walls and more like 4 ft apart). People were sitting around chatting with friends or reading or watching TV, looking like they were waiting in a airport rather than getting chemo. So I think that helped the girls get a visual of what mom was doing -- not laying on a table dying.

Of course, nothing in my life can be easy, so we had a huge snow last night -- about 12 inches. Schools were closed and my friend who was to take me to the treatment was 20 minutes late to pick me up. Then she got her car stuck in the snowbank where she pulled in too close to pick me up and I had to push her out. In my clogs, since I thought "Oh these will be good -- I can just kick them off or slip them on at the treatment." I had to hop through the snow bank, then teach her to rock the car, wondering if I was going to get run over today instead of getting chemo. We finally got her out of the rut and I had to run down the street after her since she didn't want to stop in the middle of the street. We crept along the unplowed streets and got to the appt 15 minutes late. But some nurses had called in and several patients had canceled, so I was practically the only person in there for the first 2 hours.

A treatment goes like this: I get settled in the recliner (stay dressed in regular clothes), get a warm blanket for my legs and feet and a pillow for my lap. The nurse places the IV and starts a bag of saline along with some meds for acid stomach and allergic reaction and for nausea. Nausea seems to be their biggest concern these days. I took pills yesterday, today and tomorrow, 2 kinds of nausea drugs today, then I have other pills to take for the next 2 days, also pills for whenever I feel nauseous and a cream for "break through nausea" just in case! And they wonder why many breast cancer patients GAIN 25 lbs! A little nausea might be a good thing...

After those have had time to go in, they start the first treatment, which is taxotere. That goes for about an hour, then they start the cytoxan. During the whole time, I just read a book I was enjoying, but they have TV and I had a book on MP3 player that I could have used. I also had lunch -- part of the treatment cost -- as well as tea and cookies and went to the bathroom a lot, dragging my IV rack along with me.

The whole thing took about 5 hours. That's a little longer than normal because they had my height/weight wrong on their initial charts apparently, so then they had to redo the drugs. Normally I will start the whole morning with a blood draw and analysis to make sure I'm well enough to get treatment, but I did that last week. So, 5 hours will be a normal session. I will have another Dec 30 -- a total of 4 treatments, 3 weeks apart, finishing up in mid-February.

The day after each treatment, I go in for a follow-up shot to boost the white blood production. Since that happens in the bone marrow, the shot can have bad repercussions. I had it described as a flu or a week-long hangover. However, I also heard that taking a Claritin immediately before can reduce symptoms completely.

I also have to drink 60 oz of fluid a day and stay away from: coffee, tea, & other caffeine; spicy foods, acidic foods, eat 5 small meals a day, rinse my mouth with warm salt water after every meal and before bed, and eat carbs to absorb the excess stomach acid that chemo produces. I can't remember what else. Sheesh. Oh, and stop my nervous habits of chewing my cuticles and my mouth. Sigh -- what's a tactile nervous person to do? I quit smoking, quit drinking too much. I thought cuticles and mouth biting were at least safe, if unattractive. I guess I need to email and blog more! :^)

On a happy note, with all these delays I was able to have a very nice Thanksgiving and visit to the Glenwood Hot Springs with old friends from the Front Range. Also got to get through both the major fund raisers I'm responsible for at my church, the Auction on Nov 7 and the Craft Fair Dec 5, as well as Katie's Choir Extravaganza (5 performances) and Larissa's birthday. So my major responsibilities there are concluded. Not that I'm not going to have 11 8th graders over for a belated birthday party, prepare soup for the Solstice Celebration, have my own Christmas party from the Auction, and help with the Christmas Eve Carol & Reading service. (And continue hassling with the IRS and the bill collectors.)

But my next treatment won't be until after Christmas, so I'll be healthy and fit for those parties and for my lovely niece who is coming out for Christmas to help us out and visit and hopefully get the girls out of the house for activities!

I'm hoping I will be well and active for the next 3 weeks, in which case I won't blog again until after my next treatment. So... Happy Holidays to All! Say a prayer for your health and for mine. Love & cherish your friends and family. Peace be with you.