May 12 – What a dreadful day! Supposed to see
Dr. M. my oncologist and was a bit nervous just because I know he is actively
hunting for any signs of recurring cancer. Not that Dr. P, isn’t
but he just feels for lumps and Dr. M takes blood and scrutinizes it.
Blood seems more scary, I guess. I had also made arrangements with my
regular doctor to have Dr. M’s lab perform blood tests there instead
of me having to have blood drawn again at his office. I had been drinking
lots of water and squeezing a rubber ball - all to pump up the veins in
my right arm so they could get it in one poke! No wig as I wanted him
to see how my hair was growing and to tell me if I could dye it and if
the curls were permanent. Had my list of questions all ready, too. So
I am all hyped up about going and I arrive ahead of time and sign in.
Shortly I hear my name mentioned but by the office girls not being called
in by the nurse. That is never good. The receptionist then calls me up
to tell me they don’t have me down for an appointment! Now, I always
make the next appointment before I leave their office and write it down
in my date book right then so I KNOW I made the appointment. I also like
to see Dr. P on Tuesday and Dr. M on Wednesday so I can tell him what
Dr. P said. I tell them all that and they still say they don’t have
me down like it is my fault! Now I am a bit annoyed and it shows. So they
say they will work me in. Okay, annoyance lessens a bit. Don’t want
to be there anyway! Then the lab nurse calls me and at the same time the
office girl calls me back. I decide I should go see what the office girl
wants first. Well, it seems that my referral has expired and they can’t
see me without the referral. Said it expired in December 2003! So I ask
how I was seen in February, then. They had no answer to that one, just
that I couldn’t be seen today because of the referral and that it
took my insurance five days to respond to a referral request. So I ask
whose responsibility it is for the referral and they say in a very condescending
tone that it is the patient’s responsibility to do that. In front
of all the other patients there mind you, and it is a very busy practice!
Now I am angry. I say back “Well how does a patient know that their
referral has expired?” Now in my own defense I have not dealt with
getting a referral for anything since last August and was not paying my
closest attention to details like that back then. The office staff at
the different doctors handled them. They tell me it is my responsibility
to keep track of all that not theirs. Even if they were correct it was
not the right thing to say to me then! Soooooooooooooooo………..I
tell them I am a very responsible person and that if I know my referral
has expired I will take care of it and that my other doctors office manager
(Dr. J) told me I needed a new referral for my upcoming surgery so I had
asked for it from my primary care doctor along with the request for blood
work to be done by Dr. M and that if anyone had bothered to inform me
that I needed a new one for Dr. M I would have done so at the same time.
Of course, I said this loud enough for all the other patients to hear
just in case they were not aware of this themselves. I also said, “So,
I have wasted my whole morning for nothing? How do I ensure that this
does not happen to me again?” She said she would let me know when
I came in next week how many visits the referral was for so I could record
it in my date book. And guess what – she said they would take care
of getting the referral!!!!!!!!!!!!!! So I will try again next Tuesday.
Now, I can feel I am beginning to get very jittery and it is probably
time to leave before I have a fit of some sort! I was icily polite through
the whole thing with a wee hint of sarcasm thrown in for good measure!
Now I get out o my car and I am feeling like I am about to come apart
from fury and frustration! I get in the car and throw my stuff on the
seat and start to scream “Damn, Damn, Damn, Damn, Damn” at
the top of my lungs while beating on the seat with my fists! Then I started
to cry, then I felt like I was made up of little pieces and that if I
came apart I would just be a pile of little pieces that would never go
back together again. I have not been that mad in a long time – not
since way back in September when I found I would need chemo after all
and people were telling me how good it was that I only needed four chemo
treatments. I had to sit there for about ten minutes to get myself under
control before I could drive. In defiance and without consulting Dr. M
first I bought hair dye, Dark Auburn – then I went to lunch and
had everything I shouldn’t. I was on a rampage! Took the rest of
the day for me to settle down. And – lo and behold, at 2:45 p.m.
my insurance called with the referral number! Five days my #$@*%! So with
sugary sweetness I called Dr. M’s office back to let them know I
had received the call and said I was just double checking to be sure they
had gotten theirs! Meeeeooooww!
May 13 – Amazing! I now have enough hair to actually
stick a pen behind my ear and have it stay! It felt so odd when I put
it there, well that was not odd – that was habit – what was
odd was the sensation of having something behind my ear again after seven
months of - nothing. As you can see I am much better today!
Jen came over tonight and helped me dye my hair so Interim Ida is no
more. I did photograph her though, and she will appear at the end of this
update. No fair peeking yet! Well, all I can say is that I my hair is
not red at all, just boring brown! Dark Auburn my foot (see, I am calm
now!). The package promised dark auburn for the dark brown parts and lighter
shades for the gray areas. They lied! It is all boring brown! So I guess
I will be Boring Brown Betty until this fades and I can try again with
another color and a different brand. Drats!
May 15 – Did I ever tell you that Murphy’s
last name was Clark? Well Murphy has struck again! AFTER Harold got the
(expensive) listello (fancy trim/border) tiles up in the bathroom I discovered
that the antiquing finish comes off! We also have eight accent tiles with
the same finish on the inset. So I call the store to find out what kind
of sealer we need to protect the finish and she tells me it sounds as
if the tiles are defective and will most probably have to come off but
to call the owner on Monday just in case there is a sealer that will work!
She said definitely not to grout the tile! That was not the answer I wanted!
So we are in a holding pattern on the bathroom – again! Geez Louise,
is nothing ever easy!
May 17 – A great Flavia quote today: “If
you could be anything you dreamed of, what would you be?” Am going
to do some hard thinking on that one myself.
Called the tile guy and he also thinks they are defective so he sent
someone out to look at them and that guy agrees, too. He took one back
to the store so now we wait until Friday to see what the rep from the
tile company says. Good grief! Now, why didn’t this send me into
a fury like the day at the doctor?????????
May 18 – A bummer day. Finally saw the oncologist
today and on the surface I am doing fine but……..I have a cough
that he believes is sinus related and shortness of breath that he thinks
is something else but to be on the safe side I need to have a chest X-ray
this afternoon – will also be in lieu of an annual mammogram which
I don’t need anymore! Having to have the chest X-ray is not too
bad. The bummer part is this…..after I described some odd things
that have been happening such as the screaming fit, emotional eating (recognize
it, just can’t seem to control it!), shortness of breath at odd
times not after exercising (nostrils flare and I just can’t seem
to get enough air and then it subsides in a while), crying very easily
(emotions are right under the surface) – he believes I am suffering
from mild depression and that the shortness of breath is due to anxiety
(normal with this whole cancer business but that I am showing “classic
signs” of depression and anxiety and need to deal with them in a
different way than I have been) but he said he was most concerned about
“people like me” who normally have a very good attitude, are
very pro-active in their care and are strong willed individuals. Moi?????
He says he doesn’t want to see me in a year with anxiety attacks
or a stroke from being “too strong.” I asked him why was this
happening “now” after all the bad stuff is about over and
he said it is typically “now” that this happens to people
who have been dealing with cancer. He had me see a counselor today, we
spoke for about a half an hour, I got all weepy because he felt I needed
to see someone (I guess that is the reason!) and she thought that maybe
I needed an anti-depressant. She spoke to him about that and he said at
this time he doesn’t feel I need medication but he does want me
to talk to her on a regular basis until I get through this period. If
I can’t get through it with talking then maybe I will have to do
the medicine route but I don’t really think so and she said he really
didn’t think so either so that is a good thing. This is once a week
that I am to see her though, and I guess it makes me feel I can’t
deal with my situation by myself, which does indeed seem to be the case!
Sigh – another journey. Geez – looks like Weepy Wanda has
returned!
The doctor did say it was a possibility that my curly hair would stay
if I keep it short. Hair dye is okay, too, and I don’t need to have
any pre-medications to see the dentist either so all those things were
good. I asked him when you are considered a cancer survivor and he said
after five years. Drats, I was hoping it was sooner than that. Five years
seems a long way off right now. My “anniversary” date is from
the ending of chemo not the actual surgery and that was only five and
half months ago. Hmmmm…seems longer ago than that.
The chest X-ray was a piece of cake! Didn’t even have to open
the lovely gown they provide. Just stood close to the screen from the
front and from the side and I was done!
This Flavia quote seems very appropriate today – “Our lives
are woven by the weavers of time in a pattern we cannot see.” They
need some new yarn in my pattern I think!
May 20 – Have come to terms with the need to see
a counselor and am actually now glad to be going! It feels like someone
has given me permission (that I couldn’t give myself it seems) that
I am still recovering and don’t have to prove how “well”
I am to anyone. I actually said “No” to two requests this
week for “crisis management” work. Usually I would have felt
I could work it in somehow but the doctor’s diagnosis was yet another
wake-up call in this ongoing journey of breast cancer and the after effects
it has on your life. I am beginning to feel as if I have surrendered a
burden of sorts. Maybe this will prove to be an interesting and enlightening
journey after all.
May 23 – Went with Jen last night to see the play,
“Menopause the Musical.” It was my Mother’s Day gift
and we had a great time together. It was hysterical! You absolutely must
go to see it if it is your area. Go to http://www.menopausethemusical.com/
to see if it is close to you. They are closing here for the summer but
will be back in the fall. I am going to get a group of women together
and go back and see it again. It always plays to a sold out audience here.
I bought the CD, the songbook and of course, the T-shirt! There are four
characters, Soap Star, Earth Mother, Power Woman and Iowa Housewife who
meet at Bloomingdale’s in New York City. All the songs were parodies
of real songs and were just hilarious! My eye makeup was smudged from
laughing so hard that my eyes watered! My favorite songs were “Puff,
My God I’m Draggin” (to the tune of Puff the Magic Dragon)
and “My Thighs” (to the tune of My Guy). Felt really good
to laugh hard after this week. And……….I went with my
own hair! No wig! First time I have gone somewhere “dressed up”
without a wig. I am going to fly to Phoenix on Tuesday sans wig, too!
Are you ready for this next statement???????????? I actually LIKE the
way my hair is coming in! Even the Boring Brown Betty look is not too
bad as it seems to be fading so is a bit lighter in color. Definitely
really red next time though! Lots of Mega Gel to make those wretched cow
licks behave but very nice curls around my face. At the convention next
week I will definitely not wear a wig for the day we have to set up the
booth. They never have the air-conditioning on in the convention hall
during set-up and Phoenix is 100 degrees! Sweating actually enhances the
curls so I should be just fine!!!!!!!!! I do plan on wearing the wigs
for fun and ease of getting ready for the days of the trade show and all
the various meetings and dinners that go along with conventions, will
see if I actually decide I prefer my own hair. Lost a few pounds so am
feeling good about that , too.
I see the cancer counselor again in the morning. I figured I would wait
to send this off after I saw her again so I could talk about it a bit.
I am actually looking forward to it instead of dreading it like I did
last week. I feel liberated, will be interesting to see how talking to
someone about all this makes me feel in the long run. I am surprised at
how good I feel after talking to her just the one time. My, I used the
word “feel” quite a lot in this paragraph!
May 24 – Had my second session this morning with
the cancer counselor. Not as earth shattering as last week, just talked
about myself – what an odd feeling to just talk and talk about yourself
and not be considered rude! She said it was my job while I was with her
to talk about myself.
One thing came up and I really must get this off my chest – it
is crushing Polly and Dolly, the Perky Twins, and we just can’t
have that now can we? While I really do appreciate all the nice things
that have been said about me, I feel like I am accepting them under false
pretenses. I was not any more courageous or brave than millions of other
women that have gone before, after or with me, you just don't know them
or they have chosen to keep everything to themselves. So, please know
I really am just an average woman who simply chose to write about an experience
that happens to many women who handle it just as well or even better than
I did. I had told this to the counselor and she told me she felt it would
be of great benefit to me if I wrote about it, here in the journal instead
of just thinking it.
She also made a very good point of why I am depressed and have anxiety
problems. She said that with a normal illness you don’t feel good
so you go to the doctor and they give you something or do something to
make you feel better and you take the medication or do what was suggested
and you feel better, end of story. With cancer you go to the doctor feeling
just fine to be told you have an illness and not just any illness but
a life threatening illness and then still feeling fine you have surgery
and after a bit you have chemo where again, you feel fine except for healing
from surgery and then they give you medicine that makes you really sick
and as soon as you start feeling decent again they give you more medicine
to make you sick again and tell you that you are getting better. She said
it is so far from the normal way of things that your mind has a very hard
time accepting it. In the midst of it all you just get through each day
doing what you have to do to survive this abnormal situation. When finally
on the mend your mind tries to put it all in place and it just doesn’t
fit into any of the nice neat compartments where we store experiences.
Then you try to resume your normal life and things aren’t normal
anymore. You have to adjust to way things are now, not the way they were.
Now, I know I have written about just that but apparantly it slipped by
me when I wasn’t looking and I tried to have everything nice and
normal again and it is not. I also like to be in control of things, house
and garden nice and neat, daily life nice and orderly and having cancer
you feel like you have no control over what I happening to your body (which
you don’t – feels like your own body has turned on you) and
it is hard to accept. Then there is the waiting for five freaking years
to see if the nasty stuff comes back. I guess I should be more surprised
if I wasn’t a little depressed and anxious! I sat down last week
and just started typing sentences that began with “The truth is………and
just let it come out since no one will ever read it but me. I was very
surprised at some of what I wrote about what I had “thought”
was the truth on the surface and what I really felt was the truth down
deep in my heart and soul. Am really hoping I come through this counseling
with a new attitude based more on what is best for me and what I really,
really want to do with the rest of my life. And, the realization that
no one can make it happen but me so I need to really think about what
I want and how I really feel about things. Pretty heady stuff, huh!
Okay, enough of this really serious stuff. I am all packed and ready
to head out to Phoenix tomorrow for a painting convention. I return on
Sunday night and leave to teach again on Tuesday, back on Friday and have
an appointment with the counselor that afternoon. She is keeping close
tabs on me for a while; especially with this heavy travel schedule I gave
myself! So, it will be a bit before I write again.
By the way, have I mentioned that my nipple reconstruction is scheduled
for September 15? I will go visit Jaime and her family in Dallas for ten
days before that, come back and have the surgery and then rest and recuperate
(again!) for what I hope is the last of the surgeries or treatments I
have to have pertaining to this whole long journey that is breast cancer.
Then we just play the waiting game.
On that note here is the photo of the week – Interim Ida! She has
already been replaced with boring Brown Betty and as soon as the boring
brown wears off, you will see Ravishing? Riotous? Raving? (No, not that
one for sure!) Rebellious? Racy? Red-hot? Retro? Reliable? (No, not that
one either!) Remarkable? Remodeled (Kind of like that one!) Renewed? Renovated?
Repaired?…………….Redheaded Rita! I know that
in the past Rita was Ranting but she has calmed down now and can be trusted
to behave herself!
Take care of your health and be happy in life!
Margot, a.k.a. Perky Polly, Interim Ida, Boring Brown Betty, soon to
be “something” Redheaded Rita, Weepy Wanda (gonna ditch that
one as soon as I can!)
After reading through the updates, if you have any questions please email
me