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.

Roller Coaster of Feelings Today….

For the last couple of days, my eye lids have been terribly swollen.  Not just a little – I mean a lot!  Making it difficult to read anything.  I’ve put ice on them, but no change.  This morning I called my pharmacy in KC to ask if this was a side effect of Nexavar – the chemo pill I’m taking.  The pharmacist said she would check.  She came back rather quickly and said she would put me on hold for a bit.  The next person to answer was Dr. Powers.  I was kind of shocked to hear his voice!  He told me that it was not a side effect of the medication.  It was the progression of the cancer.  I told him that the darkening area for the first time had spread from always being on the left side to beginning on the right side – just faintly above my right eyebrow.  He said I really had not been on this med long enough for it to do much, and he would still see me next week.  He did admit that from the pictures I had sent him a couple days ago, that it certainly looked worse.  He again suggested that I might want to think about hospice.  I again told him I felt good and was gaining strength.  He said that since our last visit, he had received word from the lab that examined my tumor that it showed a marker – and he named  the marker – can’t remember the letters or numbers, but it contained some kind of mutation that was sensitive to some new medication - can’t remember the name of it either, but it was not yet FDA approved, and he couldn’t say whether it would help or not.  I suppose it is kind of like a clinical trial.  I said if the current medication did not work, I was willing to try this new one.  What do I have to lose?  I will be seeing him next Tuesday after an MRI of my head (to see if there is any metastasis to my brain).  They will also check my liver profile to be sure Nexavar has not damaged my liver.

After that conversation, which was more than a bit disturbing, I went downstairs to my quilt room.  I thought it would help take my mind off of things.  But as I went through more of my small project boxes, and looked at what I could begin work on, I got more and more discouraged.  I kept thinking – if this cancer is progressing at the rate it seems to be, there really is no point in my trying to work on anything, because I can’t finish anything anyway.  I put all the containers on the shelf, and sat down, wondering what will happen to all my projects, my machines, fabric, my quilt tops not yet quilted (and there are many!).  I wondered if I would be able to speak about quilting and show my quilts next month at our ladies’ fellowship meeting.  Will I make it to spend the summer with Jeannine and the girls when they come?  Will I make it to June 7 to celebrate our 50^th wedding anniversary?  Oh, God, PLEASE let me make it to our anniversary!!!

So, I cut my stay in the quilt room short.  It was just a little too close of a reminder of what I will not be able to do.

I fixed an ice pack and lay back in my recliner to see if it would help my eyes.  I dosed a bit before lunch.  I couldn’t see any real difference when I got up.

I decided to look on the internet some more at side effects of Nexavar, and I did find that swollen eyes was indeed a side effect.  I decided to call the nurse in the infusion center at McPherson.  I knew Dr. Page would be in.  His office and exam rooms are all in the same area as the infusion center.  I told her about my swollen eyes.  She conferred with Dr. Page, and he said that was a side effect of Nexabar.  He said to use Refresh eye drops, and if that didn’t help to get back with them.  It was too late in the day to get back with them, but at least he didn’t say it was just my cancer progressing!!  It was a side effect of Nexavar!

I feel like someone is just brushing me off – and I don’t think it is Dr. Page!  Anyway, that helped to once again give me hope.  I know that it is spreading to the other side of my face, and the left side is getting quite a bit darker – almost black on some areas of my forehead.  But at least I don’t feel like I’m going to die tomorrow!

I do feel like unless God divinely intervenes, I will not beat this in the end.  When that end is, I do not know.  I do still believe in divine healing, and I continue to pray for it, if it is God’s will, and I pray desperately that it is.

Thankful tonight for:

No nausea

Good appetite

Steak that Guy grilled tonight

Workers putting in a sidewalk in front of our house

I’m not blind – I can see, even though it is with some difficulty

I still have hope for more good quality of life.

I cannot begin to thank all my dear family and friends that continue to pray for me and send such kind and encouraging words.  I’m just overwhelmed by the love and concern you show.  There will be many stars in your crowns!  And just think – if you are a believer in Jesus, and your sins are forgiven, we will spend an ETERNITY walking those golden streets together!!!!  Woo hoo!!!

As always…….I’m in His hands……

More lab work and another doctor’s appointment

This has been a better week for several reasons.  For one, I’ve felt better – felt stronger and able to be up and about more.  Still cannot get out around crowds, and if I have to, I wear a mask.  They say the peak of the flu season has not yet arrived.  ARGH!!  It’s just terrible out there!  Thankfully, I love my home – kind of a home-body anyway these days.

I have certainly not called hospice!

The highlight of my week was a visit from my cousin, Cynthia Ulrich Tobias.  She lives near Seattle.  For those of you who do not know her, she is a speaker and an author of many books.  Many have read her first book, The Way They Learn.  You can view her website here http://cynthiatobias.com.  Here is a little except from her website.

For over 30 years, Cynthia Ulrich Tobias has been sharing her professional insight and practical tips for educating the audience to understand the unique needs presented by all kinds of learning styles and finding success for even the most difficult or strong-willed children and adults.

Cynthia speaks to parents, educators, law enforcement agencies, and leaders in our communities who deal with diverse and challenging individuals—and helps them learn the wisdom, power, and life-changing benefits of turning conflict into cooperation.

She has a very busy schedule, but she had a 3-day window, so she flew into Wichita and rented a car.  I felt so honored to have her take this time to come see me.  I used to go help her with her book table whenever she would be speaking near me, but her husband takes care of all that now.  I just love to hear her speak.  She is so good and so witty!  Her website has several videos of her speaking.

She is the daughter of a Nazarene pastor.  Her mom was my dad’s younger sister.  Her mom died a little over a year ago, and her dad just died recently.  Cindy has a younger sister, and they all lived near one another.  Her parents and my parents were always very close.  I’m sure they are all enjoying their reunions in heaven.

Anyway, we had such a great time of catching up and just being together.  Her visit really lifted my spirits.  She feels more like a sister then a cousin. 

Thursday was my lab day.  This was the first lab work since getting out of the hospital, so I was anxious to see the results.  When I left the hospital, my white blood count (WBC) was 3500, hemoglobin 9.4 and platelets 145.  Thurday’s results were WBC 7,400, Hgb 11.4, and platelets 294.  Woo hoo!!  That’s why I’ve been feeling so much better.  (Normals are WBC 4,000-11,000, Hgb 12-15, and platelets 150-450.)

Friday, I had an appointment to see Dr. Page, the local oncologist, in McPherson.  I was really looking forward to seeing his take on this whole situation since being in KC and seeing Dr. Powers.  You’ll recall that Dr. Powers told me to start thinking about hospice, and I refused to think about that now.  Dr. Page had just received the CT report and knew about the two lung nodules that had increased in size and the tumor in my rib.  He asked what Dr. Powers thought about all this.  I told him that I was kind of upset and uncomfortable with Dr. Power’s suggestion of hospice, and I had to ask about Avastin or pills to take.  I told Dr. Page that I felt like Dr. Powers had given up on me.  He agreed that I should stop the Adriamycin since it was apparently not helping and was just too toxic for me.  His feelings were that the pill, Nexavar, was an appropriate thing to try.  I only started it last Wednesday, so it’s too soon to know if there will be any positive results.  The spots on my face have enlarged over the last two weeks.  So far, I have not had many side effects from the pill.  I told Dr. Page that I still had hope, and as long as there was something I could take, I would take it.  When all help runs out, then I’ll think about hospice.  He felt as long as my quality of life was good, there was no need to think about hospice.  He did mention along the way that this was not curable.  I try not to think about that.  I have a big God and many, many prayer warriors.  Only God knows and is in control of my situation.  He numbers my days, not doctors. 

I have not stuck my head in the sand, or am I in total denial about this cancer, but at the same time, I have to make the most of what I have and live my life to the fullest.  None of us are going to live forever.  There are a lot worse ways of dying than having cancer and taking advantage of hospice to ease your going.  I could be hit by a Mac-truck out on the highway, and I think that would be rather painful!!

I just always assumed that I would probably live into my 90s since both of my parents did.  That frustrates me a bit, because I have a lot of things that I would like to do yet, and I should have about another 20 years to do them!  (Feel cheated a bit perhaps….) But I know that none of us are guaranteed tomorrow.  Being incurable, it will take a Divine healing for me to live into my 90s.  So far, that has not happened.  There is healing going on all the time, or my lab counts would not have been good – just not the healing from the cancer.  Why?  I don’t know, and don’t understand.  Some people win the lottery – some people get rare cancers.  Some people are stuck by lightening – some people get rare cancers.  I don’t know what the percentage is on my cancer – I will not go on the internet to look up my cancer.  I don’t want to know the details, because it would take away my hope.  Given the choice, would any of you want to know the day/month you are going to die?  I don’t think so, so I don’t want to know my life expectancy.  I just want to live every day to the fullest – as I feel like it.  The problem is, some days, I just don’t feel like it. 

One of the things that nags at me, is that I have a whole room full of fabric and two machines (one for which is very expensive) sitting there waiting for me to work on them.  I want to, but can’t seem to get motivated to begin.  With all the things I want to do, I look at all the projects and just get overwhelmed, so I don’t work on at all.  Is that crazy?  I’m I crazy?  I hope not.  I suspect it’s just the nature of the beast.  J

Looking forward to going to church tomorrow – with mask, of course.  Just counting my blessings this evening for a good week.

As always…..I’m in His Hands…..