Tuesday, February 27, 2018

From the Depths to the Heights

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.

 About midmorning this morning, Staci, Dr. Powers’ other nurse called me.  She said, “Have you heard the news?”  Noooo…..She said the assistance program had approved the medication and would provide it until the end of the year!!!!!!  I couldn’t believe my ears!!!  She was SO excited to tell me!  She could hardly believe it, either.  She said that I should be receiving it before the end of the week.  Oh, praise the Lord!! Praise the Lord!!!  I felt like it would come through, but I was still stunned.  I guess I was surprised it was this soon.  With me having that one marker, and this medication targeting that marker, this just may be the key that unlocks the door for me.

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…..

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