A
couple of weeks ago, I knew this latest scan and visit with Dr. Powers was one
I really dreaded. I knew, because of the
last visit that gave me bad news, this one would be a very important scan that
would tell a lot – either I was getting better, or I was continuing to get
worse. I prayed so much for peace about
it – that I would not stress out about it.
And God did give me that peace. I
stopped thinking and worrying about it.
I felt like whatever it showed, I could handle it.
The
scan was at 10:30, and then we got breakfast because I could not eat 4 hours
prior to the scan. Then we met with Dr.
Powers at 1:00. I never can tell what he
is thinking when he first comes in because he is always warm and smiling. He always asks how I’m doing. He knew about my hospitalization. I told him I was feeling good – a lot stronger
after getting out of the hospital. He
showed me on the computer the results/pictures of the scan. The 3 nodules in the right lung were still
there. One was 2-3 mm and is now 7
mm. One is 4 mm and unchanged from the
last scan in Nov. (but was not there in Sept).
One in the lower right lobe was 5 mm and is now 7 mm. I think this is the one that had “popped” and
pulled away just a bit from the rib cage causing a small pneumothorax (air
pocket between the lung and rib cage).
It is small enough that a chest tube is not necessary. There is a 4mm nodule in the left middle lobe
that remains unchanged from last scan.
You
may remember me talking about 2-3 months ago about turning over in bed one
night and feeling a definite POP in my left side, just above my waist, causing
a great deal of pain which lasted several weeks. I went to my PCP in Hutch, and he did a CT
scan which showed nothing. Shortly after
that, my regular appointment with Dr. Powers was due in Nov. That CT scan showed nothing in that
area. THIS visit and scan, however, did
show “within the posterior left 10th rib, there has been development
of a local destructive and mildly expansile lesion.” In other words, there is a small tumor in
that rib now which indicates metastasis.
The strange thing is that it has not hurt for about 2 weeks. But, nevertheless, this angiosarcoma is still
on the move. L
Dr.
Powers said that the purple on my face is still active angiosarcoma.
The
bottom line is that the Ariamycin that I’ve had 3 doses of, is not
working. All it has done is make me
sick, so he said he is not giving me anymore of that or the Neulasta.
Then
he dropped the bomb……He said that perhaps I might want to consider hospice care
for the future. Hospice……that is not a
word I wanted to hear. I’m feeling good,
and I’m not willing yet to give up the fight.
I asked him about the Avastin that he has often mentioned to me. I knew that was not a particularly good option
because the last surgical area on the back of my head has still not
healed. That’s the reason he has not
used it before. It halts the healing of
anything that is not healed. Avastin is
given IV every 3 weeks. If you have some
major side effect, you can’t take it back.
There are 2 different pills that act similar to Avastin, but if you have
a bad side effect, you can just stop the pills.
So it was decided that I would go that route and give this a try. These particular medications go to the cancer
cells and cut off their blood supply, so they cannot reproduce, acting
completely differently from regular chemo.
I will be taking Nexavar (sorafenib).
The pharmacist went over this in GREAT detail, making sure no one but
myself would handle it – of it gets onto my countertop, I must clean the spot
with bleach! I’ll be taking 2 pills a
day, 12 hours apart, on an empty stomach – 1 hour before food or two hours
after food. She went over the side
effects very carefully, but said, of course, not everyone gets them all. She said it might take a week to 10 days to
get it approved through my insurance – they typically have to jump through lots
of hoops. It is EXTREMELY
expensive!! On the way home, she called
me to tell me they already got it approved, and they would put it in the mail
right away.
I’m
not sure how much faith Dr. Powers has that this will work, but I’ve said all
along that as long as there was something I could do, I would do it. When we run out of options, then I’ll think
about hospice, but not until. I still
have hope. I HAVE to still have hope!
Wednesday,
I went to see Dr. Przylecki, my plastic surgeon. I just wanted him to look at this place on
the back of my head and tell me that it was OK – that it was healing and not
infected. He seemed positive about it –
that it was healing. I told him about
the medication I was going to be taking and how it stops healing. He told me it was more important to take the
medication, and if it bothered this spot, we would just deal with that
then. So that made me feel better.
From
there, we went back to Mark’s, went out with them for lunch, and then came
home. We had considered staying the rest
of the day. They kind of wanted us to go
to Chris’ basketball game in the afternoon, but we thought it best to come on
home and not get me out in crowds. It is
a good thing we did because I’m not sure I could have taken the stress of the
next event.
Chris
(8th grade) was warming up before his game, went up for a layup, and the next
team mate did not wait his turn until Chris got out of the way, and when Chris
came down, the other boy’s elbow came crashing into Crhis’ mouth. It broke off the bone above his upper front
teeth, affecting three of his front teeth.
The only good thing is that he has braces that held the teeth in the gum. He was taken to this orthodontist who put the
bone back in place and hard-wired it all back together. This morning I asked how he was doing. Mark had him at Children’s Mercy Hospital
being checked out for a concussion, since he couldn’t remember his home room
teacher’s name or his friend’s name. He
was diagnosed with a mild concussion and is to rest and cannot play any sports
for the rest of the week. Bless his
heart!! He is such an athlete, and he puts
his ALL into whatever sport he is playing.
This is his 3rd broken bone, with the other two due to soccer. A prayer for Chris to heal properly and have
comfort would be appreciated.
This
wasn’t enough drama at Mark’s house this week.
You’ll recall that he has these two beautiful golden retrievers that are
10 years old. Last weekend they were at
our house while Mark and Chris went to a soccer tournament in Dallas. The one, Heidi, has been having issues for
some time with her hips. She cannot come
up the steps by herself. The vet x-rayed
her a few weeks ago, and said her hip joints were just gone. By the time we
kept her last weekend, she had all but quit eating, and was terribly
skinny. Mark said he was having to think
about having to have her put to sleep.
By the time we got to OP Monday, she had quit eating altogether. That usually means a dog is in pain. She just wanted to lie on her bed. She would get up now and then to have you pet
her. Wednesday morning, they had an
appointment with the vet to see what he thought and if she should be put down. I thought sure he would have her put to sleep
then, but he brought her back, saying that the vet had done some x-rays and
blood work. Later in the day, the vet
called to say she had a tumor on her bladder, and she was in renal
failure. So early this morning, among
all else that was going on, they had to have her put to sleep. Bless his heart! I know that was terribly rough on him. Praying for him.
Chris
will be with his mom this weekend, so Mark and Amy are coming here and to Hutch
to celebrate Amy’s birthday. He said he
just had to get away, to rest and clear his mind.
Although
this has been a rough week for our family, I stopped to think of what I have to
be thankful for. Here are a few: 1) The
liver was clear. The spot that had been
ablated is shrinking in size. 2) My pancreas and spleen were clear. 3) There
were no NEW spots in my lungs. 4) Guy, in the midst of my crushing feelings
after hearing the word “hospice” took my hand and said, “There is still hope.”
5) After going back to Mark’s, Amy was there to hold me and just let me cry. 6) In spite of the bad news, I still feel
good. The spot on my head has pretty
much stopped hurting, and I’m in no other pain. I feel pretty strong. 7) Though
all this, I’m still infection free. 8) I’ve heard from SOOOO many family and friends
that are praying for me and cheering me on.
THANK YOU dear ones!! 9) My
pastor came by for a visit this morning and encouraged me, read Scripture, and
prayed with me. 10) My devotion yesterday was again spot-on.
11)
GOD IS NOT FINISHED WITH ME YET.
Although I do not understand why I’m not healed, I know there is still a
purpose for me as long as I’m here. I
try not to question His ways or plan for me, but I’m human, and sometimes I
just do. Sometimes I think I could be so
much more effective for Him, if I were just miraculously healed. What a testimony I could have!! I would shout it from the rooftops!! However,
as I pray each day for that healing, I do not get a clear feeling/assurance
that it will happen this side of heaven.
But I don’t give up praying, and I don’t give up hoping. I just can’t! I . just . can’t!!
As
always……I remain in His hands….
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