Last week I was able to
see the new oncologist from McPherson – a town about 20 minutes from
here (closer than Hutch and smaller than Hutch). I really liked him!! He was very nice, and he had done his
homework getting up-to-date on my records that KC sent to him. He seemed very knowledgeable about
angiosarcoma, too. I never got that
feeling from Hutch. He took time and
listened to me – spoke to me on my level. I told him about my desire to have my eyes
done, and he said that would be a good thing to do while we were in this “holding
pattern”
waiting for this last big surgery on my head to heal completely. I left there feeling really good about him
and going there for future treatments if needed.
In order to have my droopy
lids fixed, I would have to take a field vision test to see if I qualified for
my insurance to cover it. I called my
Hutch eye doctor and set that up for today.
He had planned to do it in December, but I told them that if I were to
have the surgery, it would need to be done asap, so that I could begin
treatment again for the cancer. I was
afraid of putting it off too long. I saw
the eye doctor this morning, and they ran the test. It showed I very definitely needed the
surgery. When I talked with the doctor,
I told him that I would probably have the surgery at KUMC so they could remove
this spot on my forehead at the same time.
He was perfectly OK with that and said just let him know.
After I went home, I
decided that perhaps I should email Dr. Powers pictures from a week ago of my
head and my cheek and pictures of the same taken today. Here are the pictures and the content of my
email.
Nov. 13
Nov. 20
To Dr. Powers
"I wanted to send pictures of my head from Nov 13
and today, the 20th. There’s not a lot of change
yet - hadn’t really turned purple but had become more red. I am contemplating
the eyelid surgery at KUMC. I’ve been tested and qualify. I’ve talked with
Dr. Przylecki about it. I was thinking that I could have this place
taken off my forehead at the same time. Do you think this is something I should
do (have this spot removed)? You’ll
notice the blotchy red area is coming down onto my forehead, so I don’t expect
clear margins. You’ll also notice these
spots on my cheek are more prominent and are raised. My big question is: can I
wait this long (to get the surgery and heal) or do I need to just forget the
eyelid surgery and get back into treatment? I probably could
not get the surgery scheduled until the 2nd week in Dec.
Sheryl Colle
PS I saw Dr. Page and really liked him!!
He said to get the surgery while we were in this holding pattern. I just
didn’t know if we would be waiting too
long to start treatment again, given the spots on my face."
Here is the reply I got back from him this afternoon:
"I think we need to abandon the eyelid surgery
and proceed with systemic therapy asap. This is starting to take over the whole
left side of your upper face, let alone these small new pulmonary nodules.
I
would say we should start with doxorubicin-containing regimen for now, as
I am still a bit worried about using avastin with the graft in the back. I
would be using doxorubicin IV push every 3 weeks.
Do
you want to get started up here next week? Then transition to Dr Page's office
after the first cycle? You will need an echo before the first dose.
Let
Stacie know how you want to proceed, and we will tell you more of what we need
from you...
Benjamin Powers, MD"
This morning before seeing the eye
doctor, I prayed that God would help me make the decision about the eye
surgery. Well, that prayer was certainly
answered – took it right
out of my hands! I’m kind of disappointed to not
get my eyes done, but it’s not like I’m blind. I’m actually kind of relieved. I was kind of uncomfortable being away from
chemotherapy for this long (since June 20), knowing what was going on inside
and on my head, and now my face.
So tomorrow I’ll be calling KU to see if I
can get it scheduled to start next Monday. We need to be back here Tuesday
because a friend of Guy’s from Alabama
is coming for a few days to deer hunt. I
wouldn’t mess that up
for the world since he is SOOO excited and has been planning this for a
year. He said not to worry about
him. I don’t think one treatment will cause me to get sick for the
week, so I think I’ll be just
fine. Besides, I messed up his planned trip here for the last turkey season since
I was sick then.
I did look up the chemo agent, and it
appears to not have very many side effects.
One thing I noticed was that neuropathy was NOT listed. That will be a big blessing in itself!! Nausea, vomiting, and mouth sores are
possible, but not very common. Those
were SE of the last chemo I took, but I didn’t experience them. The only real SE from my last med was
neuropathy. The other side effects had
to do with the steroids I had to take. I’m going to ask tomorrow if I
have to take the steroids as I did the last time. If I do, at least I know what to expect this
time.
The other thing is that I take it
every 3 weeks – like the
avastin I thought I was going to take. I’m kind of relieved that I’m not doing avastin at this
time since it slows healing so much.
And, although Dr. Przylecki said I was healed, it was not to Dr. Powers’ satisfaction – and mine.
I’ve felt really blessed these few months off chemo. I have felt much more like myself. My energy level is not up to par, because I
get worn out pretty quickly if I try to do something strenuous – like going up
and down stairs several times, trying to lift things I used to lift, etc. Just last Sunday morning, I took my shower
and was getting ready for church just like I always do, but before I could get
dressed, I had to sit down and fan myself because I got terribly weak. I hadn’t done that for some time! I do break out in a cold sweat if I
overdo. I just sit down and fan until it
passes.
Guy and I decided that we should move all my quilting
stuff downstairs from the 3rd bedroom on the ground floor. I’ll have at least twice as much room down
there and will be able to get all my stuff out of boxes and spread out. There is one giant room down there beside the
4th bedroom, a full bath, and a large storage room. The grandkids will still have plenty of room
to play and watch TV down there. We can
then put the two twin beds from the bedroom in the basement up here on the
ground level. We’ll probably eventually
put in one of those stair-climbing chairs, but for now, I can climb stairs OK –
I just take it slowly. We took some of
the light things down there this week, but it was a comical mess watching us
try to get a heavy kitchen-type (that my Bernina sits on) table down there!! Guy was about to bust trying to hold onto it
from above, and I was scared to death for him to let go at all, because I was
afraid of falling over backwards if I could not hold it. It was hilarious – but not really! We stopped after that! There wasn’t an ounce of energy left in
either one of us when we finished. 😀 I
think we’ll wait until the kids come later this week to help. We’ll probably just call the movers we used to
move from the Eagle St house to this house to haul the 3 large and 4 small
bookcases down there.
Dec. 1 a nice couple with two cute very young boys will
move into our other house here to rent for about a year until they get a new
home built near Hutch. We have a few
things left over there that we need to get out – some dishes and a closet full
of quilts. Then we need to do a little
cleaning to get ready for them. Hope we
can get that done this week. So much to
do…….so little energy!
I am just so in love with this devotional book!! Jesus Calling – Morning and Evening The other night, this was my devotional: (you can click on it to enlarge it)
Did you see that down at the bottom??? “Receive my
healing….” RECEIVE MY HEALING!!!! I got so excited, I could hardly stand
it!! I sat there on the bed with my arms
outstretched, and my palms turned upward – ready to receive it! Did I wake up the next morning to find all my
spots gone? No, but that’s OK. I would
have died of a heart attack right there on the spot if that had happened!! But it renewed my faith. I love those verses
from 1 Cor. 4:7-9 “But we have this treasure in jars of clay to show that his
all-surpassing power is from God and not from us. We are hard pressed on every side, but not crushed; perplexed, but not in despair; persecuted, but not abandoned; struck down, but not destroyed.”
I don’t know how God plans to heal me – whether miraculously,
or using doctors and medications, or taking me home with Him. It is not for me to decide or even know, but I
will . be . healed. I praise God for
that!
And as always……..I’m in His hands……
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