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…..

Tuesday, February 20, 2018

MRI, labs, and oncologist visit

It seems like this visit was challenged from the beginning.  Jeannine really wanted to be with me on this visit.  She talked about flying to Salina – a town about an hour from here and on the way to KC if we took the northern route.  I got on the airline internet sites and found a one way ticket for $79.  That would bring her into Salina about 2:00 in the afternoon.  That would get us to KC about 5-6 pm.  So I booked it and sent her the email.  She would leave Denver at 11:30 am.  She called me saying that her ticket was for MARCH 19 rather than FEBRUARY 19.  OH, NO!!  How could I have done that.  The plane was a 9-seater and it was full for the flight I thought I got her.  I immediately got on the site of the airline, and the only way to get her here in time was an evening flight, leaving Denver at 5:30 pm, getting into Salina at 7:58 pm.  For $299.  ARGH.  She said that was too much and too late.  She said she would just take the Green Ride bus back to Ft. Collins.  I could hear her about to cry.  I told her I would just pay it, and we would just get to KC a little later than planned.  So that was plan “b”.    She said the weather was really bad in Denver and hoped the plane would be on time.  There was one chance for her to get on the early flight.  Everyone had checked in but one person.  In order to be on stand by for that flight (in case that person did not show), I had to very quickly pay for the evening flight so she could get through security on time.  I was frantically trying to type all the necessary stuff necessary to purchase that evening flight ticket, so the lady at the ticket counter could get the confirmation before they would let her head for security.  When you are in a hurry to type with that kind of pressure, you make all kinds of mistakes.  I had her on the phone, and she was conferring with the ticket lady.  FINALLY, I got it to go through and gave her the confirmation number, and she took off for security.  At the very last minute, that person showed up!  Bummer!!  I told her it was OK.  We would just go later. 

Here she is boarding this little plane in Denver.

We were all packed with the car loaded, so there was nothing for us to do but nap!  I think Guy ended up taking 3 naps all together.  That was good, because he was good to go for the late trip.  She was able to board on time.

 We took off for the airport.  We had never been to the Salina airport before, and we knew it couldn’t be very big.  There is an Air Force base in Salina, and the Maps app Guy had was taking us to that Air Force training airport.  We arrived just a bit ahead of her scheduled arrival, but we could not find the terminal. We drove all over the place, and there simply was no terminal – and no cars anywhere.  I was about to panic because it was well past her time to land, and we could not find her!!  We backtracked down the road to a Casey’s station, and Guy went in to ask.  We came within a stone’s throw of it in our driving back and forth, back and forth.  It was not well marked as to how to get there – one little sign that we had whizzed by.  When we got to the stop sign, we were supposed to turn left instead of right.  It’s a wonder we didn’t get picked up driving all over that Air Force base.  FiNALLY, we found the place!!  Her plane was due to land in 5 minutes.  They had left Denver 30 minutes late due to getting the plane deiced.  She had sent me a picture after boarding of a passenger seated in front of her.

She finally arrived, and we all headed to Overland Park.  We had never taken this route before.  It was supposed to be all interstate, but when we neared OP, it took us off on another state road.  At first it was a two-way road, but soon turned into a 4-lane divided highway.  We had no idea how it was going to end up, but we just followed the Maps app.  The biggest issue was a freezing mist most of the way.  The road was not slick, thankfully!!  But it was nerve-wracking for me – prayed all the way!

We got in about midnight.  Mark was in Toronto, and Amy and Chris were in Hutch (Chris had Monday and Tuesday out of school), so we had the whole house to ourselves.  We went to bed pretty quickly since I had to be across town this morning by 8:00.  That meant we would be in rush hour traffic, but the worst part of it was that an ice storm was predicted overnight and for the morning.  We left plenty early, not knowing how bad it would be.  Thankfully, the area was right on the edge of the bad ice when we left, and they were warmer than in LR, so the roads were just wet when we left.  HOWEVER, while I was getting my MRI, Guy said an awful amount of ice came down, coating the roads.  It let up by the time I got through.  As soon as I finished, I started itching a spot on my upper right arm.  I looked at it, and it felt just like a mosquito bite.  When the nurse saw it, she said she would have to escort me to Urgent Care which was in the same building to be checked out and make sure it was not a reaction to the contrast solution they use IV during the procedure.  I was taken back immediately, and the doctor came in.  He looked the bump over well and said he did not see that there was any evidence of a bug bite.  He talked about the signs of anaphylactic shock.  He didn’t think it was that – I wasn’t having any breathing difficulties or trouble with swollen throat or tongue.  He told me to wait in the waiting room for another 15 minutes just to be sure I was going to be OK.  By the time we left, it was just raining, but the roads were very slushy.  We were about 19 miles from Mark’s house and didn’t really have any trouble getting there.  Thankfully, the traffic was light.

I had made arrangements originally to meet with a long-time dear friend of mine, Carol Broadbooks, on Monday afternoon, but since those plans had changed, I thought we would be back to Mark’s about 10, after the MRI, and we might have about 30 minutes we could meet.  But when the weather turned so bad, I texted her that she might not want to get out.  However, she said she would try.  The first time, she said her tires just spun trying to go over the little hill out of her neighborhood.  We were so disappointed.  She called, so we could at least take, but after talking for a bit, she said she was going to try it again.  She was so determined to get to see me!  That time she made it and arrived at Mark’s with about 30 minutes before I had to leave to get my lab work done.  What a precious, precious lady Carol is.  She and Bob were our pastors in Hutch Nazarene Church when our kids were small.  I’ve had a lot of great pastors over the years, but I think they threw the mold away when they created Bob and Carol.  It is so strange and so wonderful how our lives have come together again and again over the years.  Bob became a district superintendent in Alabama while we were there, and we got to go to lunch several times.  We always seemed to pick up each time with where we left off.  More like a sister to me.  Then they moved to the Tennessee district, and I thought I’d never see them again.  Then Bob got promoted to the Regional Director for the USA/Canada Region for the Church of the Nazarene, headquartered in Kansas City.  Well, wouldn’t you know – they are in Olathe, KS (next to OP), and here we are in Kansas, so our paths cross again!!  She came to Mark’s this morning, read Scriptures to me and prayed such a beautiful prayer.  I can hardly believe how God has been so good to bring us together again.  I feel so honored to call her my friend, and she is such a blessing to me.  I hope my heavenly home is not far from hers!!  I just love this couple!! http://www.usacanadaregion.org/about/leadership-and-staff

At 11:15 I had labs drawn at the KU Cancer Center which, thankfully, was only about 10 minutes from Mark’s house.  Then I saw Dr. Powers at noon.  The first thing he told me was that my MRI of my head was normal – as far as NO metastasis to the brain!!  This was indeed a positive start to our visit.  He showed me on the computer the images and how they did show the cancer on the outside of the skull.  This only verified what is very obvious on my head and face.  He then immediately started to talk about this mutation marker.  He showed me the print out (many, many pages), and how they had looked though 100s of markers and found only one!  That is a very good thing.  If they had found more than one, he would not have known which one to attack, but because there was only leading marker, they could pick the medication that would target my cancer.  He was very honest about the fact that there was no data on this drug treating angiosarcome.  There are two drugs and both are FDA approved to be effective for lung cancer and melanoma.  He named one of the major hospitals (can’t remember the name) that was doing a study on this medication being used for sarcomas, but no data collected against angiosarcoma.  So, he said it was a “hail Mary”, and he could not tell me if it would help at all, but it was worth a try.  He said this was pretty much my last chance, and if it did not work, we would have to start considering hospice.  Jeannine had wanted me to ask him to explain a little more about his recommendations for hospice for me, rather than just throwing that term out there again and again.  He explained the symptoms I would start exhibiting if it were time – like not eating, drastic weight losses, not able to be up and about to take care of myself, etc.  I feel like I’m a long way from any of those symptoms.  I told him that as far as how I feel, it Is great.  It’s just that if you look at my head and face progression, it is pretty bad.  He showed me my lab results, and they were the best I’ve had in a very long time – Hgb 13.4.  That is fantastic and probably why I feel so good.  My WBC is 8.4 and platelets 204.  It seems strange to me that everything is headed in such a positive direction except for this STINKING cancer!!!! 

I’ll include a recent picture at the end so you have to scroll to see it.  You’ll probably look at it and feel there is no hope, but God works in impossibilities.  I don’t expect to ever look normal again, but Dr. Powers said this on my cheek should start receding if the med was working.  By the way, most of the swelling in my eyes is so much better.

Dr. Powers brought one of the pharmacists in to talk to me about this drug.  The pharmacists there are SO helpful.  You can call them any time with a question or concern about side effects, and they call me to see how I’m doing with the meds.  The biggest hurdle with the medication was to be getting my insurance to pay for it, because even though it is FDA approved, there is no data for my kind of cancer.  They did say that if my insurance turned it down, they had other ways of helping me with it. UPDATE:  I did get a recorded call after getting home, and he recorded message was that it was denied.  BUMMER!  I'll call the pharmacy in the morning and see where we go from here.

I asked Dr. Powers if he was hopeful.  He again reiterated that it was kind of a shot in the dark – kind of our last-ditch effort, since he couldn’t guarantee anything.  I was OK with that.  I was willing to take the chance.  I said, “You aren’t giving up on me, are you?”  He assured me that he was not.  He explained how, even when patients went to hospice, it may seem like they have given up on them, but they hadn’t – it was just another step in the journey.  After he left the room, I said to the nurse that I felt he had a more positive attitude this time than the last three times.  She said, “Well, he has something concrete to offer you this time, where before he didn’t, and it’s really hard to be upbeat when what you are doing is not working, and you have nothing else to offer.  It certainly takes a special person to be an oncologist.  You have to deliver so much bad news to people that you have become attached to.

Jeannine said she felt like we had a more honest conversation today, and at one point she thought he was going to cry.  Guy, Jeannine, and I all left feeling more positive this time than other times.  AND there is this whole CREW of prayer warriors out there, at least one is even fasting and praying for me.  So many people truly believe that I’ll be healed.  I believe that finding only one marker to target is a God-thing.  Perhaps this is God bringing this medication to me.  I know He is still in control.  My evening devotion last night was so on target.

 I can’t possibly know what the future holds for me, but I do know Who holds my tomorrows.  “Instead of bemoaning your circumstances, you can look to Me for help.  You recall not only am I with you, I am holding you by your right hand.”

As always…….I’m in His hands……

PS  A big praise the Lord was getting home safely.  When we left OP, the roads were covered in ice.  We thought when we got to the interstate, the ice would be cut off with the big trucks and traffic.  No so!  We didn't really run out of it until about an hour when we left the interstate.  By the time we got home, the roads were clear.  There is still ice an snow on our lawns.  Jeannine left for Ft. Collins about 4:30, driving back the GMC that was left here when we got her the used CRV (which she loves).  I've sure been praying that the GMC gets her home one more time.  She should arrive about midnight our time.  She had to be back for work on Wednesday.  I sure did appreciate her coming!!

See pictures below (if you want).

This was when my eyes were so swollen, and they are not now.  But you can see that the left side of my face is somewhat enlarged.