Sunday was a really great
day. Our church had a choir from
Sterling College for our morning service.
They were just so talented! Our
pastor teaches some Bible classes there (about 30 minutes from LR), so he had a
little “pull” to get them to come. They
were just a delightful group of young people.
Then we had “dinner on the grounds.”
It was a full basement with 50 of them, visitors, and our regular
attenders.
Sunday night I had sent an
email to Dr. Powers so he would have it 1st thing Monday
morning. I was feeling a bit panicky. I wondered if perhaps he might want to switch
me to the other medication that was similar to the Nexavar I’m taking. Perhaps it would work better, because, by
looking at my face, one could tell this Nexavar was not working. I sent him pictures as he likes for me to do
periodically. The area above my forehead had opened somewhat and was oozing a
bit. And this place on my cheek had
enlarged a great deal. I also told him
about an MD Anderson clinical trial my sister had told me about. She said there was a network in Shawnee
Mission Kansas (near KC). He sent me an email back Monday morning that
said: “If the sorafenib is not working, then highly
unlikely that pazopanib would work, as they work very similarly on mutual
molecular pathways. This other med, Mekinist, is totally different.
We will certainly submit the appeal again,
but I think we need to get hospice started now. If we are able to get the drug
Mekinist for you, we can always stop hospice then to give the drug a try.”
There he was
again – talking about hospice. I am not about to die!! I was sitting on the edge of my bed, feeling
discouraged again. Then Tiffany, his
nurse, called me. She said she had read
my email to him and his response back to me.
She wanted to know how I was and how I felt about the email. I told her I was doing well, and I just didn’t
understand why Dr. Powers kept “pushing” hospice on me. She explained that he didn’t feel like I was
dying, but because I was so far from KC, he didn’t know what was available near
me if I should need hospice in the future.
He just wanted me to check around and make contact with hospice because
they have resources that might be useful to me now. But more importantly, he didn’t want to wait
until I actually was sick and in needed of resources before I knew what was
available. Better to plan now, while I’m
doing well and can make choices than to wait until I’m really sick to begin to
see what is available. He just wants me
to make an initial contact now – so that there is a plan in place when and if I
need them. That made perfect sense to
me. I told her I really appreciated her
calling and clearing that up for me. I
told her I felt a lot better after talking to her. I think our nursing home here (which is a
VERY good one) offers hospice care. I
know the DON, so I’ll check with her in the next few days.
I asked Tiffany
about that MD Anderson clinical trial, and she said that the Shawnee Mission
group didn’t have a clinical trial going – they only had access to doctors at
MD Anderson if they needed them. She did
look on her computer to see where clinical trials for angiosarcoma were
occurring. There are 30 of them, but
they are all back east except Denver (8 hours away). She told me that she had sent off the 2nd
appeal to my insurance company 1st thing that morning. It was now going to be reviewed by a 3rd
party, and she had a specific name to send it to. Anyway, after talking with her I started
feeling more hopeful. I then called the specialty
pharmacy, and Drew said there were some other areas on the papers that I had
signed for the assistance program that needed to be filled out and signed. He had originally told me that those
questions were not necessary to complete.
So, he emailed me the document again, I filled it out, and sent it back
to him. He said it might take 2-3 weeks,
but if he hadn’t heard by Wednesday, he would call them. He said that the assistance program didn’t
move as quickly as the appeal process.
I kept praying
for the medicine to come quickly, but I changed my praying about my
cancer. I started thanking God for my
healing rather than asking for it. I
noticed Sunday night it seemed that the area on my forehead seemed a teeny weeny
bit less black and more reddish -purple.
It also seemed that the area on the right side of my forehead was
not as prominent. Also, the area near my
left temple seemed just a bit lighter.
Guy noticed it, too. I said I
didn’t know if the Nexavar was kicking in finally, or if God was just touching
me. He said, “Or both!” The oozing area above my forehead has scabbed
over. This monster on my cheek pretty
much remains. The redness around my left
eye is very evident. Sometimes I find
myself reading pretty much with my right eye due to blurriness of my left
eye. But then at other times, it seems
OK. There is still some swelling of the
eyelids, but the left is worse than my right.
I kind of got away from using the drops, but have gone back to regularly
every 4 hours, and it is helping.
Here was my
devotion for Monday morning – so appropriate, as it always is.
Here is how
Mekinist works:
Targeted
therapy is the result of about 100 years of research dedicated to understanding
the differences between cancer cells and normal cells. To date, cancer
treatment has focused primarily on killing rapidly dividing cells because one
feature of cancer cells is that they divide rapidly. Unfortunately, some of our
normal cells divide rapidly too, causing multiple side effects.
Targeted
therapy is about identifying other features of cancer cells. Scientists look
for specific differences in the cancer cells and the normal cells. This
information is used to create a targeted therapy to attack the cancer cells
without damaging the normal cells, thus leading to fewer side effects. Each
type of targeted therapy works a little bit differently but all interfere with
the ability of the cancer cell to grow, divide, repair and/or communicate with
other cells.
So tonight, I’m just
praising the Lord for answered prayer, and praying this med will be the puzzle
piece we’ve been looking for.
Also thankful for:
No pain
A loving, supportive,
helpful husband
SO many praying family and
friends – THANK YOU!!!!
Escaping the flu so far –
for both of us
Warmer temperatures (not
particularly the wind!)
My comfortable home
Being able to sleep well
As always…….I’m in His
hands…..
No comments:
Post a Comment