October 11 - Feelin' fine! Hair really coming out a lot today! Got a
full brushful of it this morning! My little baggie is getting full! Still looks
okay except I am going to have to trim the back at the bottom as instead of looking
spiky (looks cool!) it is beginning to just look thin (does not look cool!). Going
to have to wear a shower cap or hat when I am around food. All I can picture are
the cafeteria ladies from high school! Anyway some hair fell in the lettuce today
as I was helping to put our burgers together for lunch and Harold just calmly
picked it out. We changed places so I was just handing him things instead of being
right over our food. This shedding all over is worse than it coming out in a brush
or in the shower!
Got a new project to keep me busy without causing me undue stress. Am having
my web site completely redesigned and changing hosts while I am at it. It will
be gorgeous! It has been the way it is now for years, has worked just fine, I
have been to busy to really pay it the attention it needs and it is now in need
of an overhaul. It is my storefront after all. Since I am confined to home for
a good while, now seemed the ideal time to do this. Should be easier to navigate
and to locate specific items. There will even be a place for my new magazine articles!
Will let everyone know when the unveiling is! All I have to do is email her text
and photos so I should be able to handle that part of it. Should be about a month
if I can keep up with her!
People are so amazing! I got a package in the mail yesterday from a lady whom
I have never met, only communicated through email, but she has purchased a lot
of my packets and books and painted most of what she bought. She heard about my
situation/illness/problem - I never know exactly how to describe what I am going
through, as I don't feel ill, never did feel ill (except from nerves!), "situation"
sounds odd and so does "problem" since the doctors feel they got all
the cancer and the chemo is just a preventative measure. Anyone got an better
answer for this "situation" I am going through???????? Anyway, it was
all in a box about gardening, packed with bath goodies and included was an Angel
of Hope by artist Susan Lordi who has teamed up with the Susan B. Komen foundation
to eradicate breast cancer. The rough carved angel has looped wire wings, no facial
features, a plain cream colored gown and both her arms are raised up in the air
with clenched fists in a victory pose! Of course, I promptly burst into tears.
I was showing Harold and he just left the room at that point. I had told him that
crying was okay and not to worry about me then, worry if he finds me staring out
a window for hours on end! Her card was especially nice as she changed the text
to read "So many happy (painting) moments in my life were created by you."
Needless to say, I was very touched.
October 12 - Well, I now have to wear a wig or something on my head.
So much hair came out today I had another session with Weepy Wanda! Going to have
to switch to a gallon bag soon! Using a sandwich bag now and it is bursting at
the seams. I am really having trouble with this. It is just so visible and I can
tell you I don't look good with no hair! I have bald spots!!!!!!!!!!!! And the
rest is so thin I look sick! I will not shave it off though because I want to
see exactly how long it takes to all come out. At the rate I am going it will
be tomorrow! Somehow I thought this would be more gradual. Glad I am going to
the Look Good Feel Better class tomorrow - I need it now! I am taking in Romantic
Rose to be styled and I will have to remove Sassy Simone to put on Rose! Not gonna
like that I can tell you - doesn't matter that I won't be the only one - doesn't
matter at all - it is happening to ME and I am having a hard time getting past
that! Poor Harold, there is really nothing he can say to me so he just holds me.
I told him I was just going to have to have myself a good cry and then I would
be better. A friend called and that was the best thing that could have happened
as we ended up laughing. I have known her for 30 years or so and we used to streak
her hair all the time when we were younger. Remember when you pulled the hair
out through those plastic caps with a crochet hook????????? Well apparantly we
did it once too often or left the bleach on too long - we did something wrong
because when we went to rinse off the bleach, her hair started coming out in handfuls.
Luckily we hadn't bleached everywhere, only the top and all of it didn't come
out, but we were certainly scared! We both remembered that incident so she had
some idea of how I feel. I am sure I will get used to having a bald head, (I'd
better since I will have it for months!) but right now I cannot bear to see myself
in a mirror or to have anyone else see me. Sounds so very vain but I can't help
it. I read that this was probably the most devastating thing that happens from
chemo and believe me, they aren't kidding!
Did a photo shoot today of lots of my artwork for my new web site. Was setting
the artwork up on a white background on the patio floor and I kept having to pick
off the hairs so I could photograph! The dog doesn't shed as bad as me!
Worked out in my garden today, am glad I got to do that as it makes me feel
so good to be outdoors. It was very hot and humid but still felt good to be outside.
I had lost a good bit of hair this morning and had a headband on to keep it out
of my eyes when I was gardening so before I got into the shower I ran a comb through
it to get the loose stuff so it didn't go down the drain. Had quite a bit come
out but figured that was it. When I put the shampoo on and ran my hand over my
wet hair it just came out in handfuls! Same for rinsing! Quite a shock that was.
Then I carefully patted the wet hair so as not to disturb it any more and took
the towel off. It definitely looked really thin! Couldn't leave it all messy so
ran a comb through again to smooth it down and another big batch came out.
I am feeling very resentful right now - I know it is an odd word to describe
this hair loss but it is the truth. I managed to get through having the mastectomies,
dealing with the reconstruction, another surgery for the chemo port and then the
chemo itself. I feel like just whacking someone or something because it just feels
like the final indignity that my hair now falls out! I know the chemo is working
to save my life, I do know that, but……….. Not reasonable, I know
but it is how I feel right now.
I have tied a pink scarf around my head and it feels okay but I think I will
have to find something that suits my face a bit better for around home. It's the
troll thing again! For those of you that don't know what I look like please go
to my web site - www.margotclark.com - and click on my bio so you can see that
really and truly I don't look like a troll except that I do need some height on
my head. I can just imagine what those of you that have never seen me must think
from all my strange descriptions I give of myself!
Had unexpected company drop by earlier today and I was good……….I
just grabbed Sassy Simone, plopped it on my head and threw on some eyeliner. Even
gave them a showing of all my different wigs! So, I know I sound sad and bitter
about losing my hair but I can still act goofy when I need to!
Going in for my "fill" tomorrow after the Look Good Feel Better class.
Going by myself for the first time! Harold's last day of school for this section
is tomorrow and Jen is off on Wednesday, Thursday and Friday to take care of her
momma so since I will be out and about anyway I will just pop in for a "fill."
I like Dr. J, he only sticks me with a little needle twice and is making me new
perky boobs so I don't associate mean and nasty things with going to see him!
I may go as Sassy Simone or maybe Romantic Rose - will have to decide what persona
I feel like! Be the first time I have worn the wigs "for real" out in
public. We will get pictures of me in the wigs soon. Didn't want to start wearing
them until I had to.
I know I am going on an on about the hair but when I read about it, all the
info said you would probably lose your hair and that it was devastating for most
people. I want you all to know what it "feels" like to actually go through
it - it's the "word" thing again - hair loss, devastation - I understood
the words but not the actual meaning of what a person would experience. So, if
you know of someone besides me who is going through this, be especially gentle
with them now. It hurts inside.
October 13 - Much better today. Had a talk with myself about the hair
thing. I decided to bite the bullet and get on with things! Woke Harold up this
morning and said, "Look at me!" He did and said it wasn't as bad as
he thought it would be- - Hmmmmpppfff! I walked around for an hour or so before
getting my shower with nothing on my head but my thin, patchy hair! It will be
all gone soon and I MUST get used to it as it will be this way for months! I can
show family right now, maybe later for friends. It probably won't look as bad
when it is all gone as now being thin and patchy but I am moving in the right
direction anyway.
I chose to be Sassy Simone for my first wig day. Wore all black with a bit
of black lace on the camisole. Sexy, sassy Simone! Remember Simone is a spiky
redhead!
Full day today. My friend Marie came over early and we chatted and then went
out to lunch. Left there to go to the Look Good Feel Better class. It was enjoyable
but I didn't connect with anyone there. I think I was too cheerful! I can tell
you I was the least affected by cancer and treatment than anyone else in the room
so if I had gone through what some of them did or still had to do I don't know
if I would be so cheerful…………. I did realize how important
the updates are and the book later are/will be though. One woman had breast cancer,
had 18 or more lymph nodes removed then a lot of radiation treatments. She told
how she also got lymphedema from flying north for a wedding or graduation and
no one had ever told her about wearing a compression sleeve and when she got back
her arm was all swelled up and she then had to be treated for that! She did not
seem up set but I was! I did not say anything (but you know I was biting my tongue!)
because I could not believe of all those treatments and surgeries NO ONE had ever
told her about lymphedema and how to avoid it!!!!!!!!!!!! Someone also mentioned
that support groups were a great place to find out about the best mouthwash to
use and little things like that! Again, held my tongue but thought to myself that
their health care providers should have supplied them with that info!!!!!!!!!!!
I understand that only 20% of chemo patients get mouth sores, which is great unless
you happen to be in that 20%!!!!!!!! I did learn how to make the neatest turbans
out of cut apart T-shirts! So cool! I will even wear those when I am out and about
and don't feel like putting on a wig. Also learned to tie some scarves, which
I will like to wear at home. Maybe later will go bareheaded all the time at home
but for now I like to see something on my head. We each received a huge box of
make-up and skin care products from very well known companies such as Estee Lauder,
Clinique, Chanel, Mary Kay and more. Really nice things, too, not demo products.
I was impressed and will remember these companies and their support when I shop
myself. The volunteer cosmetologist thinned and cut the front of Romantic Rose.
She really had much too much hair for my face. Scary moment when I had to take
off Sassy Simone and put on Romantic Rose. I just did it, probably easier since
half the women there had already lost their hair. Put Sassy Simone back on and
off we went for the next thing on my calendar - my "fill!" By the way,
everyone, including the cosmetologist thought Simone was really my hair! Lots
of compliments - great for the ego which is dragging on the ground right now!
Am perking right up, I am! 90cc in each this time! Right one is getting rounder
but still has a flat part in the middle, left one is catching up but is still
rather square. Picture it - thin patchy hair, one square boob and one slightly
flattened boob (not counting the ones still under my arms!) - will be VERY glad
to get through this phase of treatments! Eye make-up of the utmost importance
right now - seems to be the only recognizable feature I have left! Dr. J said
the wig and color suited me and that I might just consider that style and color
for real when my own grows back in! Hmmmmmmmmmmm……………..
go back again next Monday for another fill and then have to skip a week due to
the low counts times. I will go the Monday before and the Monday after my chemo
treatments. I no longer feel as if I have on a steel chest plate. Don't know when
that feeling went away, just noticed it today! I feel now like I have on a firm
underwire bra without the straps and back. No soreness, and my skin has lost that
dreadful sensitivity! Hurray! I am VERY FIRM though! Definitely have cleavage!!!!!!!!!!
Off to the grocery store from there, gotta lay in a supply of food for the
next few days when I am feeling so tired after the chemo on Wednesday. Got home
and Harold came out to help with the groceries and he had gone to the barber shop
and gotten all his hair cut off except for some fuzz!!!!!!!!!!!! What a sweetie!
He said we can be twins! Really a very touching thing for him to do since he doesn't
have a whole lot to begin with and is very attached to what he does have!
October 14 - Working like a crazy person to get taxes out and orders
filled before D-day tomorrow. Ann here today, so nice to not have to worry about
the heavy cleaning, I can manage to keep things picked up. Wore a scarf/turban
thingee all day and felt okay with it. Quite comfy although I do resemble Madam
Zora quite a bit and I'm sure if I go out like this people will expect me to read
their palms and tell their fortunes!
Nothing of major importance. Being very careful to drink 8-10 glasses of water
to be sure I am hydrated for the chemo. Also began a "constipation protocol"
(doesn't that sound hoity-toity!) so I don't have that particular problem again!
It actually means to take a stool softener twice a day beginning the day before
and continuing through the two days after chemo. Feel fine, have energy this time
as I am not recovering from having the port surgery so feel this one will be easier
on me.
October 15 - D-day! Took forever to get ready - not sure why as all
I had to do was put on my make-up and slap Sassy Simone on my head! I think it
is very important to me that I look my best for these treatments so I feel I am
in control and that all this will not get me down! Lost the most hair today so
far. It just would not stop coming out in the shower! I must change over to a
quart bag now. All this will not fit into a sandwich bag anymore! Still have some,
don't know how I do , but I do! I was busy preparing charts to find out my "safe
times" so Jaime and my friend Linda would know when they could visit. Also
had an appointment with a nutritionist before the chemo - let's just fill up the
day!!!!!!! Learned a lot form her and will pass it on when I go through all the
info she gave me. One interesting fact - research has shown that people who eat
eight or more servings of fruits and veggies per day have a lesser recurrence
of cancer. I do not want to have to get any shots to up my blood counts so I am
keen on eating right!!!!!!!!!
On to chemo. Not nervous today because I know what to expect. Very nice feeling!
Saw Dr. M and got great news. I had asked him what they did after all the treatments
were over to determine if the treatments worked. He said there was nothing he
could do. I told him that was not very encouraging! He said he knew that and hated
to say it but it was the truth. He said all the tests would not be able to show
up single cancer cells. Then he went on to say that after my treatments end I
will have a 90% chance of not having it reoccur! Well, that is pretty much the
same odds a the general population!!!!!!!!! I won't have to take any ongoing medication
either so that is a plus in my book. As to my "safe times", they are
before the 10th day after chemo and after the 17th day after chemo. Since I am
doing so well, Jaime and Linda can come anytime, I will just still have to be
especially careful with my food during those times in between. What good news,
I don't have to be a hermit! I will have to see Dr. M every four to six months
……………..for the rest of my life!!!!!!!!!!!!!!! Glad I
like him, too! Didn't realize that, thought that for the first five years it would
be every six months and then would taper off to maybe once a year for the next
five years and then I guess I didn't think beyond that. Didn't ever think it would
be so often and forever!!!!!!!!!!!!!!! Not complaining at all, mind you, I like
to know that someone is watching out for me diligently! I am writing this about
7 p.m. Harold and Jen took a nap when we got home, I am the only one awake - something
is wrong with this picture! Actually, I felt that I needed to catch up the updates
before I crash. It is also so very emotionally draining on all of us even though
it doesn't hurt me to get the treatments. That went just fine, just like last
time but without my terror! Had to get a flu shot, too! I hate shots but I suppose
it wouldn't do to get the flu right now!
Had some peanut butter and crackers as a snack and will have veggie soup for
dinner as , once again, I am restricted to sick people food for tonight and the
next two days. Firmly believe that keeping track of protein, veggies , fruit,
iron, fiber - all that stuff, helped immensely in bringing my counts back up.
I will end up being Nancy Nutrition before all this is over!
Took the Zofran, anti-nausea medicine, at 6:30 this time instead of waiting
until 10 p.m. and Dr. M feels that will control the queasiness I felt last time.
Will have to se the alarm to be sure and take it again at 2:30 a.m. so I keep
it in my system without any lapses. Okay, by me, I can sleep anytime I want over
the next few days and I would much rather be sleepy than nauseous! Amazing - all
my blood counts were almost back to normal! In a week!!!!!!!!!! He also feels
I will not lose my eyebrows and eyelashes for which I would be eternally grateful!
Also, still no metallic taste in my mouth. They (nurse) said that usually happens
to people who are getting more than four treatments although Lisa did experience
that side effect.
Well, I am beginning to feel a bit woozy and Jen has made me soup for dinner
so I am going to go for now. Thanks for ally the continued prayers and wonderful
positive thoughts that are still coming my way. You see how well they work!
One more thing, I am still being amazed by people. I got a personal card today
from the pharmacy department at the grocery store where I shop. They always send
a message back home to me whenever Harold picks up any of my prescriptions. They
got a card for me that said "I" in a few places and crossed that out
and wrote in "we" and then they all signed it. Oh my, made me all teary
and I had my make-up already on!
October 16 - Didn't go to bed until 2:30 a.m. as I was awake and that
was the time for my dose of Zofran. Do not want that nausea to be able to get
a hold on me! Up about 8:30 feeling pretty good. Even went for a walk around the
neighborhood this morning! Jen went with me and said I looked like a movie star
- I had on a black outfit with a bit of lace, my black velvet cap and big sunglasses!
Am doing much better than last time. I think it is because I started the Zofran
earlier and am eating a soft diet instead of a clear liquid diet so I have a bit
more energy. About 2:00 p.m. I was in the recliner sound asleep though! I can
feel "it" coming upon me and I have to take a nap, now! Worked on my
table cloth for the rest of the day, I now have one strip done!
It is now 1:30 a.m. and I am hanging in there until it is time for the Zofran
and then I will be off to bed. How odd the chemo makes me tired but also keeps
me awake! kind of a boring day, but hey, I'll take boring over sick any time!
October 17 - Just felt crappy all day. No energy, Weepy Wanda was lurking
about, depression hanging around, too. This hair thing is just so depressing.
Dr. M. probably hit it on the nose when I told him how hard it hit me when I wasn't
expecting it to when he said that up till now it was all internal and now the
wigs and scarves and hats announce to the world that you are a cancer patient.
Add that to the sheer trauma of losing the hair in the first place and you have
quite the situation. Up till now it has been a private journey, now it is public
unless I stay indoors for the next three or four months and that is not going
to happen! I guess I enjoyed being selective as to who I told and, by the way,
telling and seeing are also two different things. I will still tell anyone anything
they want to know but self-image is taking a hit right now so the seeing part
will be private, at least until I get a better grip on it all.
Sorry to end this update on such a down note but I pledged to be honest with
al of you.
Love to you all,
Margot, a.k.a. Brenda Braveheart (who is still winning despite having some
setbacks!)
After reading through the updates, if you have any questions please email
me