Sunday, June 24, 2018

A busy week......

This has been such a busy week, if I don’t start writing at some point, I’ll never catch up.

Back in December and January, when things looked so bleak for me, physically, I asked the Lord to please just let me live until June 7 and be able to celebrate our 50th  anniversary.  Well, He has more than answered that prayer.  A week ago Saturday, June 16, we had a big anniversary celebration. This was as soon as the kids could be here.  We had a cake, punch, nuts, mints, balloons, beautiful cards and notes, and most of all family and friends.  Some people that I thought might come, did not, but others came that I had no clue would come!  There were lots of delightful surprises.  The grandkids did the serving, and we just visited and visited.  I wished I could have been more than one person in order to adequately visit with everyone.  Mark set my iPhone up to record the event live for FB.  This was mostly for my sister, Colleen, who wanted in the worst way to be there, but could not.  I was so thankful that I felt good and withstood the day well.  I’m sure the adrenalin flowing helped.  I received so many beautiful cards and sweet notes that I was able to sit and leisurely enjoy later in the evening.  Here are a few pictures from the event.

Flowers Colleen sent to us.

The cake

Mark, Amy, Dylan, Christian

Jeannine and Maya

Mark and Jeannine and the grandkids were able to be here all this last week.  Mark had to take Dylan back to KC to go with his team to a soccer tournament in Indianapolis – Regionals.  In the 2ndgame, Dy scored the only goal in overtime to win the game, but today (Sunday) they lost and were eliminated from the tournament.  πŸ˜’ Mark and Chris had to return home this afternoon, but Jeannine and the girls are here for most of the summer.  They will be in and out a bit, and so will Mark, but it is always nice to have your family together.

Sunday, after the celebration, I really felt pretty good, but on Monday, I bottomed out!  My legs felt like noodles, and as soon as I stood up, I needed to sit down again.  My BP was under 100, so I knew I needed fluids. I knew I had not been drinking water over the weekend as I usually do. It was time to have my port flushed anyway, so I called the infusion center, and they told me to come on in. After a liter of fluids, I felt like a new person.  This is the 1sttime in a long time I had to have fluids.  The IV chemo dehydrated me on a regular basis, but this pill I’m on does not affect me like that – thankfully.

For several months now, my left knee has been bothering me, particularly when I would first stand up and start to walk on it. I had asked my PCP to recommend someone for me.  I knew there was no way I wanted – or could even have – another total knee replacement. But this knee was acting just like the right knee I had replaced in 2010 – arthritis.  UGH!  So, Tuesday, I saw Dr. Larimore in Hutch.  My PCP had already taken x-rays.  Dr. Larimore said I had “grade 2” arthritis.  I’m not up on my arthritis grades, but he said it was not bad. Whew!  He said he would inject it with a steroid, and if that did not help, I should come back for an MRI to see if it was a torn meniscus.  Oh, boy!  I dreaded that injection!  I had had two different ones in the right knee before having it replaced and it was NOTfun!  I’m such a pansy when it comes to needles.  πŸ˜–  The other two times, the doctor shot lidocaine in the knee, waited a bit, then injected the steroid.  I said to Dr. Larimore, “You’re going to numb it, aren’t you?”  And he said, “Yes, I’ll take care of you.”  He just had me sit on the edge of the bed, and I didn’t see any 2ndneedle.  I folded my arms tightly, shut my eyes tightly, and felt something cold on my knee.  I kept waiting for it to hurt on the inside, but suddenly he was done!  I said, “That’s it?”  “Yep!”  Well, that was practically nothing!  Within a short period of time – and ever since – I could walk without pain – like magic! BOY, I hope this lasts a long time!

After that, I felt like a new person!!  

Thursday, when I went to bed I had a couple hive-looking spots on my anterior thighs.  And my left underarm had been itching during the evening.  I didn’t think too much about it, because little “funny spots” appear and disappear on my skin from time to time.  “Rash” is a side effect of this pill.  In the night, my left arm, at the site of my flap scar began to itch.  It was enough that I woke up and decided to take a Benadryl.  I didn’t really even look at my arm – just took the pill and went back to bed.  I did go back to sleep, but when I woke up about 9:00, I was covered with hives!  It was all over my upper thighs, arms, and some on my trunk.  NOW WHAT??? I had no clue what had caused this. I had not eaten anything different, hadn’t changed the laundry soap or lotions.  I thought at first I would go to the urgent care unit in Hutch, but decided instead to call my pharmacist at KU.  I asked if there was any chance that the steroid given in my knee could have caused it.  He didn’t think so.  He said that 87% of the people on Mekinist have skin issues.  He said to take another Benadryl and call him back in the afternoon to let him know how I was doing.  He would shoot an email to Dr. Powers to let him know what was going on. It wasn’t long until Dr. Powers called me.  He pretty much concurred with the pharmacist.  He said to take the Benadryl and an Allegra.  If I had cortisone crΓ¨me, I could use it, too.  If it was not better by the time I was to take the Mekinist (I take it at 4 pm), I should stop it until the hives were all gone and then start it up again.  He said I was on the maximum amount of that drug (2 mg), and I could go down to 1.5 or 1 without losing any efficiency if we needed to do so. At the time I was talking with him, the itching was not all that bad, and some of it had even started to fade a bit.

Earlier in the week, I had sent Dr. Powers an email to clarify when I was to see him again.  I knew I didn’t need a CT scan for about 3-4 months, but I wasn’t sure if I were to see him monthly still.  So, while I had him on the phone, I asked him if I could get my lab work here and send it to him rather than come up there monthly like I had been doing.  I really saw no need to continue to see him monthly since I was doing so well.  My appearance, visually, is not changing all that much - can still see a little darkened area on my cheek, and the stubborn little scab on my forehead.  I have a small dark spot just above the hairline, but it is not changing, and I’m watching it.  The little one by my eye disappeared some time ago.  He said that plan was fine.

 By 4:00 when it was time to take my pill, the hives were pretty much all gone.  By bedtime, there was only a little pink area on my arms.  I went ahead and took another Benadryl at bedtime, for good measure.  Tuesday and Wednesday nights I had not slept much due to the steroid in my knee that kept me awake.  You either have a painful knee or you take steroids and stay awake!  πŸ˜€  Oh, well…..  

So, most of Thursday, I wanted to sleep all day with all that Benadryl.  One never knows how I’m going to feel on any given day, but I have to say that I have more good days than down days, and for that I’m very thankful.  I just wish I didn’t have to sleep so much to really feel good.  It seems to waste so much valuable time.

I’ll leave you tonight with this cuteness – 2 of Jeannine’s rescue dogs.  The bigger one is Willow, her therapy dog she trained.

And as always......I'm in His hands.......

Monday, June 11, 2018

Me and my music…….

I’ll get back to review of our 50 years periodically, because it might take a while to complete that.  In the meantime, I don’t want to lose other thoughts that come to me that I want to write about.

I want to write about music tonight.  Music has always been such a big part of my life.  I’m not a great singer – I wish I were, but I can carry a pretty good alto harmony on most songs, especially if I’m standing next to a strong alto in the choir.  πŸ˜€  I love to listen to the oldies and doo wop songs of my teen years.  For some reason I like to listen to that music when I’m quilting.  It would always remind me of “home” and my high school years.  Now I can listen to it and be smack dab in the area – although things have changed a bit!  Most of my music revolved around instruments.  I played 1stchair cornet my freshman year – although I was the only cornet/trumpet player!  πŸ˜€  But most of it revolved around the piano.  I wasn’t a great solo pianist.  I was/am an accompanist – boys’ choir (which I adored, of course!), girls’ choir, all school choir, all kinds of ensembles.  I even played the base drum in a drum quartet for contest one time..  

My piano teacher was a little old delightful lady here in town, Marjorie Tidwell.  She just taught me to “play.”  There weren’t any real basics of music.  I learned that from my school music teachers.  I wish I had learned all about chords, but that came later as an adult, by necessity as the contemporary praise songs came along. But that’s another whole story.  I could not play by ear (I wanted desperately to!!), but I could play just about any music you put in front of me.

My most favorite music now is gospel music – especially the Collingsworth Family.  She I get to heaven, I’m going to play just like Kim Collingsworth!!  When I had my reconstructive scalp surgery and was in ICU for 7 days, I had one of their albums, “Fear Not Tomorrow,” on my iPhone, and day after day I listened to that album with my phone quietly beside my pillow. It was a large part of my healing process at that time (and still is).

I’ve always been a church pianist wherever we attended until the last church in Alabama.  It was a very large church with a professional-like praise team.  Their talents far outclassed mine.  It was quite an adjustment at 1st.  I wanted to play sooo bad!!  But I soon came to realize that my playing-in-church-days were over. I didn’t even play the piano at home!  I guess you could say I was sort of piano-deflated.  I settled for singing in the congregation and finding the harmony in the contemporary praise songs.

I guess it was in middle school or high school when I started playing in church.  Of course, we sang hymns.  I experimented a little with adding a few notes and a “run” or two here and there, but I didn’t get very fancy - I was too timid and self-conscious.  (Actually, I was too much of a perfectionist, and I didn’t want to hit a wrong note.)  Two people along the way helped me with that more than any others.  They pushed and challenged me to go beyond what I thought were my limits.  One was my freshman music teacher, Mr. Kaylor.  He’s the one that put me out there to accompany lots of choirs and ensembles.  It’s hard to remain timid when you accompany boys’ groups.  The other man was John Nance, our music director at Hutchinson 1stChurch of the Nazarene.  This was/is a fairly large church, and we did some choir programs and arrangements that were HARD!  But with his belief in me (and pushing), I was able to play them.

When I was in early high school, I wanted to play the organ sooooo bad!! I asked the pastor (at that time) of the Congregational Church if I could practice on their church organ.  He said I could.  In those days, the church doors were always unlocked, so I would go in there for hours and play my heart out.  I didn’t have any lessons – just figured it out on my own.  When we moved to AL, I played the organ part time and the piano once in a while in the first church we attended.   Anyway, during the time Guy was in Viet Nam, I decided to buy an organ.  I didn’t really have his blessing, but I bought it anyway.  Well…….what else was I going to do for a whole year besides work????  It wasn’t a big fancy church organ, but it did have preset rhythms on it, and it was a lot of fun – and helped to pass the time away. I got pretty good with the foot pedals, too.

Somewhere in the early years of our marriage, I sold the organ and bought a piano – the same one I have today.  In our early AL years, I bought a keyboard.  It was a terribly fancy one, but it had a full 88 keyboard.  I used that at a church that we helped to plant. When that church did not make it, I donated that keyboard to that church district – not sure why.  I really wish I had kept it.  (It was a charitable tax donation write-off).  Several years later I bought another one, nicer one.  This one I still have, and it is nice – not giving it away.

For most of the years in Alabama, we attended a rather small Nazarene Church. I played my keyboard there. For most of the years there, we continued to sing hymns.  Then the contemporary choruses started to creep in.  We had a music director who played the guitar, and he began to teach us these new songs.  Some didn’t like it at first (some never did!), but I was determined to learn them. This meant a whole new way of playing. You didn’t just play notes on a page – you learned the chords.  OH, NO! CHORDS that I never learned as a youngster.  But I found out that that I felt the rhythm of the songs – I just had to learn the chords. When I did, it was a whole new freedom-way of playing.  Don’t bother me with the notes, just give me the words and the chords, and let me listen to the song a few times so I can get the rhythm of it.  I really enjoyed those songs and the total different way of playing.  So when we ended up at the big church, I wanted to play those songs!!!!

So now we end up in Little River, and we are in the Conservative Congregation Church, so much like the little Nazarene Church I grew up in. They have a piano – and there is that organ sitting there that I played so many years ago!  But no one plays it.  At 1st, I was just thankful to be able to go to church, what with my cancer treatments and all.  But I decided to place my keyboard there – in front of the organ (I didn’t really have a place to put it at the house anyway.)  I was thinking, “Maybe some time – once in a while – when I’m feeling good, they will let me play it for the service.”  I could use the organ setting and play along with the pianist. Now, they didn’t know my music abilities from Adam, and frankly, I had not played for so long (6-7 years), I wasn’t sure of my abilities anymore myself! I talked with the pastor about it and let him know that I might be able/like to play my keyboard using the organ settings.  He decided to give me a try.  The first Sunday, I got so many complements – they LOVED the ORGAN!  “We miss the organ sound so much!  “It added SO much to the service!”  So Pastor began to ask me to play more and more as I felt like it. Now, I’m a regular!  πŸ˜€  I do so enjoy the privilege of being able to play again – to have a place where I can “give” something. I hate just warming a pew!  Last week I played for a funeral.  It had been a long time since I did that.

Kind of an amazing thing is beginning to happen.  At 1stwhen I started playing again here, I was sooooo nervous.  Could I do this?  Will I ever get comfortable again?  Plus, my eyes were really bothering me from the chemo treatments, and it made it hard to see the music.  But they got a light for me, and that has helped tremendously.   Playing for that funeral, I was more relaxed than I have been in a long time.  The old “feeling the music” started to come back. You know, there are people that play the piano – play the notes on a page – just to get through the song.  And then there are those who play the piano – they feel the music, and it flows from that feeling.  I started to feel that music again.  It’s hard to describe, but most pianists will know what I’m talking about. I have a favorite piano arranger - Elmo Mercer.  His arrangements have the chords that I hear but I just can’t find. His style of music is my style of music.  

I’m certainly no accomplished pianist – those are the Kim Collingsworths, the Dinos, the Karen Dimonds (my sister-in-law – you can just hum a tune, and she can play it.)  But I enjoy playing, and I want to play for the Lord.  When I play, I want it to addto the service. I don’t want to play in such a manner that it detracts.  I’m so thankful to be a part of a church where I can once again participate in this manner.  And I’m so thank that the Lord is helping me get back the “feeling-playing.”

Music is so much a part of my life that when I first get out of bed in the morning, the Lord gives me a song, and when I go to bed at night, He gives me a song.  

“What a Day That Will Be” when we can sing in the heavenly choir……♫♫♫

Friday, June 8, 2018

Reflecting on 50 years.....

Sitting here, reflecting on the last 50 years…..where has the time gone???  It seems just like yesterday Guy and I were beginning this journey together.  

We had just graduated from Fort Hays State University with Bachelor’s degrees – his in agriculture and mine in nursing.  A whole life ahead of us!  What would it bring?  We graduated on Monday and married the following Friday in the Nazarene Church in Hays.  Mom and Dad had sold the grocery store in Little River, KS, and moved to Iola that January of 1968.  I didn’t know anyone in Iola, and the church where I grew up in Lyons, KS was too far away to coordinate any plans for a wedding there, so we decided to have it in Hays, where we had been attending church for 4 years while in college.  I had lots of help from the church ladies and the mother of my maid of honor, Carol Henderson.  It was a small wedding with two attendants – Carol and my sister, Colleen.  My sister-in-law, Karen, played the organ, and my brother, Carl, sang.  I don’t recall right at the moment what the songs were – I think one was “Because.”  No wedding would be complete without that song!  My niece, Carla, was the flower girl. Guy’s best man was Keith Garey, his 2ndcousin, and the other male attendant was Wesley Galyon, a high school friend.

 My sister, Colleen is on the left, (in the picture), and my niece, Carla, is standing by her.  My maid of honor, Carol, is on the right.

My brother, Carl, is clear to the left, and Karen next to him.

The wedding and reception went off without a hitch.  Lots of unwrapped presents were placed in the back seat of Guy’s car, a 1068 Chevy Chevelle SS, and we took off down the street with others following behind. It was not long until we heard a small voice coming from the back seat under all the gifts.  “How far are you going to go, Uncle Guy?”  We screeched to a halt and let Bruce, Guy’s nephew, out.  My brother had placed him there.  (By the way, today is the 6thanniversary of my brother’s homegoing. How I miss his sense of humor!)  I guess he got picked up by those chasing us. πŸ˜€

We drove to Salina, KS, and stayed in a hotel off the interstate.  We decided to unload and open all our gifts.

The next day we went through the Eisenhower Museum in Abilene.  We didn’t have any money for a fancy honeymoon, so we did the next best thing. Mom and Dad were leaving immediately after the wedding for a vacation Dad had won through his insurance company, so they said we could spend our honeymoon at their house in Iola. Colleen was staying with a couple in the church.  As we pulled up to their house, another car pulled up also.  Out of that car jumped Colleen (5 years younger than me).  She yelled back at the church couple, “Oh! Never mind my having to stay with you! My sister is here!!”  Uhhhh…..that’s OK, Colleen……you go ahead and stay with them……. πŸ˜€

Our 1sthome was a double-wide mobile home out in the country on some of the farm property, about ¼ mile from Guy’s parents’ place.  We only lived there for a very short time.  Due to some financial issues Guy’s brother had, we had to move from the double-wide into his brother’s house and his brother moved into the double-wide. That house was about ¾ mile south of  the home place.  

I was working as a nurse, 3-11 in Lyons, about 10 miles away, and Guy was working on the farm for his dad.  6 months into our marriage, the dreaded draft noticecame in the mail.  He left for basic training in Ft. Eustes, MO. I remember Mom and Dad taking me there in a terrible snow storm.  I don’t know if it was to take him there or to get him when it was over.  While he was in basic training, our pastor’s wife (in Lyons) got concerned about me going home each night from work, near midnight, and driving by myself up that long driveway to a big empty house.  They invited me to come live with them while Guy was gone.  And I did. Such a nice gesture they offered me. 

When Guy finished basic training, his next assignment was in Newport News, VA.  I’m not sure what he did there, but as soon as he was able to live off the base, I moved there.  I packed my car as full as I could, and Mom and I drove there – drove straight through, and then she flew home.  We lived in a little rented mobile home.  As I recall, pretty much all I did all day was knit afghans and watch soap operas. There was nothing else to do during the daytime since Guy took the car each day.  That assignment lasted a few months, and then the dreaded assignment came -  Viet Nam! πŸ˜’  This is what we all dreaded, but knew was inevitable.  And to make matters worse, he left for Viet Nam the day of our 1stanniversary.  I’ll never forget it.  It was devastating!  I took him to the airport in Wichita to tell him a very tearful goodbye – not knowing, of course, if I would ever see him again.

My bags were packed with pretty much all my belongings, and when I left Guy in Wichita, I headed east to Iola to stay with my parents for the time he was in Viet Nam which was to be a year.

I got a job immediately in the Iola Hospital.  I think it was on the maternity unit.  But it wasn’t long until Mom and Dad moved to Hutchinson, KS, to continue his work in insurance, and I moved with them.  I immediately got a job on the maternity unit of Grace Hospital (no longer in existence). I worked nights.  I would work 11-7 and sleep most of the day, getting up for a few hours in the evening, and go back to work.   Work and sleep……work and sleep……trying to pass the time quickly. I wrote Guy every single day – did not miss a day.  To this day, I know Guy’s SS number by heart because it was part of his address.  He wrote me pretty regularly, also.

About 7-8 months into Guy’s deployment, I met him in Hawaii on his R&R for a week.  We waited that long, so that it would be a shorter time until he was home.  As it turned out, he stayed an extra 37 days in Viet Nam, and then he could come home and get an early out – be done!!  That was a loooong 37 days!!!  He had trained to be a door-gunner in a helicopter, but ended up with most of his time on the ground as a technical inspector.  It was a glorious - and THANKFUL day - when he made it home safely!!!

I know a lot of guys came home from Viet Nam and had many issues.  I can honestly say that I don’t think it changed Guy much.  I think if you went over there with your head on straight, you came home with it on straight. I’m proud of him for serving his time, and deeply thankful he made it home unharmed.

After Guy’s discharge, he took a job working for a well/irrigation company, and we lived in a little apartment in Lyons.  I worked just down the street in the doctor’s clinic.  There were 3 doctors there.  Those are some of my fondest memories as an RN.

I became pregnant with Mark during this time, and shortly before he was born, Guy took a job managing a feed lot about 50 miles west of Lyons between Great Bend and St. John. We bought a new 14x70 singlewide mobile home – the largest singlewide they made at the time – and moved it onto the edge of the feedlot. It was really nice inside, and I enjoyed living in it. I worked 3-11 in the small St. John hospital.  I would take Mark to the home of a nice farm couple just down the road with some little girls who just loved having a baby to play with.  They would keep him until Guy got done working, and he would go pick him up and take care of him for the evening until I got off at 11.  

I delivered Mark at the Lyons hospital since my doctor was one that I had worked for.  Colleen came to stay with me for a few days after I got home.  I had a bleeding episode the day after going home.  Colleen stayed with Mark, and Guy drove me (hurriedly) back to Lyons.  Just before getting there, a water hose came off the pickup, and we were stranded on the side of the road.  Guy only had one wrench in the truck to work with.  He got the hose connected again but had to walk to the nearest farm house to get water to put back in the truck.  No one was home!  But he found a little water in an outside container and walked back to the pickup with it.  It was enough to get us on into Lyons.  Meanwhile, as I lay there in the seat of the truck, I was convinced that I was bleeding to death!!  Miraculously, when I arrived at the hospital, the bleeding had stopped – never did know what caused it, but it didn’t return for the few hours they made me wait, and we went back home.

To be continued at a later date…….

Wednesday, May 16, 2018

Details of my oncologist’s visit and test results

Yesterday I had a CT scan of my neck, chest, abdomen, and pelvis.   As it turned out, it included my head when I read the printed report.  I found out I had a brain!  That was nice.  It was “grossly unremarkable.”  While that doesn’t sound very exciting (in laymen’s terms), it really is a good thing. But I’m getting ahead of myself.

We arrived at Mark’s Sunday afternoon.  It was nice that Mark was in town this time.  It was a nice Mother’s Day. He grilled a nice dinner of pork chops, chicken, salmon, and tuna, along with fresh zucchini and summer squash.  

Monday morning, we took Mark and Amy to Egg-N-I for breakfast after the boys got off to school.  I couldn’t eat for 4 hours before my test, and since my CT scan was not until 2:30, the time worked out perfectly.

Sounds like all we did was eat!  πŸ˜€

The test itself was no big deal.  They accessed my port, drew my lab work, and then did the scan.  I’m pretty much an old pro at these scans now.  It’s not my favoritething to do.  When the dye goes through, you get this whole-body feeling of warmth, and you would swear that you’ve wet your pants!  J  I don’t like the sort-of-panic feeling it gives you for about 5-10 seconds.  But it doesn’t last long, and the whole thing only takes about 7-8 minutes.  Once you are done there are no after affects.  You just have to drink, drink, drink to flush the dye out of your kidneys.

For dinner Mark made BBQ chicken pizzas and pepperoni and veggie pizzas – all from scratch.  They were grilled and soooo good.  Here we are eating again…..:πŸ˜€

My appointment with Dr. Powers was 9:15 this morning, so thankfully, I didn’t have to wait long.  I didn’t really know what to think or how to feel.  I wasn’t really worried, but I was concerned.  I had been in his office with my hopes up so many times, only to get disappointed. And as I had posted on FB, this little “dot” had come up next to my left eye, and I didn’t know what it was – It could have been a new AS mutation, so that was rather unsettling.  It’s hard to describe what it is like to be sitting in a room just waiting for a doctor to come in and give you the news that is so critical to whether you are likely to live or die.  Even with a lot of faith, you can’t help but be nervous!  Is a guillotine going to fall against my neck, or are they going to set me free????  Are you going to be sent to death row or are you going to be pardoned???  Thankfully, I didn’t have to wait long in the room before he came in with Tiffany, the nurse.  He had a big smile on his face and papers in his hand.  He got right to it – he said that the lung nodules were almost completely resolved, and he laid the papers on my lap, showing me the complete report.  I think I was in shock!  Could it really be??????  

For my nurse friends who want details and know medical terminology, here is the summary of the report: (my comments in italics) 
·      Neck  - Postsurgical changes within the left periauricular region and left neck without evidence of metastatic disease with the neck.
·      Chest – 1. Near compete resolutionof several small pulmonary nodules seen on prior exam with development of at least 2 sub-5 mm additional pulmonary nodules.  These may be infectious/inflammatory in nature versus pulmonary metastases.  He showed me these on the screen, and they were very tiny.  He really did not seem concerned about them.  One was in the right lung base and one inferior left upper lobe.  I think they didn’t really look like the other nodules seen before.  A close internal follow-up CT scan of the chest is recommended for further lesion.  2.  Resolution of the small pneumothorax.  3. Slight increase sclerosisof metastatic lesion involving the posterior left 10thrib.  Slight increase sclerosiswas a good thing – it meant that it was resolving and healing.  I knew my side no longer hurt or was sore, so I believed that it surely must be healing. In fact I told them as well as I felt, overall, I surely must be healing inward as well as outward.
My liver, spleen, and pancreas were all normal.  

Dr. Powers called in the other nurse and even the pharmacist that helped me get the medication through the patient assistance program.  They all stood there grinning and shaking their heads. They just could not believe the difference in a little over 2 months’ time.  Stacy said, “You look fantastic!!  You look so pretty!  You look better than the first time you came in here!”  We all hugged, high-fived, and I cried!!  Dr. Powers took more pictures, and as he went out the door, he said, “You are my pin-up girl!!”

As for the spot by my left eye, Dr. Powers said it could be a little broken blood vessel, or, “I don’t mean to imply you are old, but sometimes as we age, we get little brown spots here and there.”  

He said to watch it, and if it changed for the worse, he would definitely want to biopsy it.  He would then send it in for the genetic studies to look for another marker and appropriate medication for it.  So that gave me hope to think that if it should turn out to be cancer, he had a plan in place.  Otherwise, I will likely be on Mekinist for the rest of my life.   I told Guy later that it was my beauty spot!

I will see him monthly for labs, and get another scan in 3-4 months.    

We left, and as we got to the car, we were nearly whooping and hollering!! We stopped at Mark’s to get Annie and tell Mark and Amy the good news and goodbye.  Then I began to shout it from the rooftops!  ALL GLORY TO GOD!!!!!  I just could not stop thanking Him and giving Him the praise.  And thanking Him for all the people who prayed. I cannot BEGIN to tell all of you how much your prayers have been such an integral part of my journey.  Thank you THANK YOU from the bottom of my heart. I know that this cancer will most likely be something I have to deal with in some fashion or another (unless God divinely intervenes and defies science – which he certainly could!), but if we can just control it to a large extent and keep it in check, then I will be blessed beyond measure – which I feel I already am!!  I feel like the weight of the world was lifted off my shoulders today, and I’m still needing to pinch myself to know that it is true. PRAISE GOD FROM WHOM ALL BLESSINGS FLOW! That song will take on a new meaning for me this Sunday.

As always…….I am in His (healing) hands,,,,,,

Wednesday, May 2, 2018

Catching up.....

Sorry to have taken so long to get back here.  It seems every time I sit down to catch up, I fall asleep. πŸ˜€  I used to chuckle at my parents who would sit, and soon you would see their chins on their chests. πŸ˜€  Now I have become them.  I hate wasting that time when life is so precious each day.  It’s a side effect of this medication.  As long as I’m up and about doing something, I believe that I’m gaining strength and stamina.  But at times of the day, I simply have to take a nap.  Perhaps it is a part of the healing process. Therefore, it may take me several hitches to get this one written.  I actually do my best writing after 10:00 pm, being the night owl that I am.  But it’s 9:40 am right now, so I barely have my eyes open, much less my brain in gear.

And speaking of eyes, that is probably my most bothersome side effect. It causes facial swelling and blurriness.  I manage around the house just fine, and I can read OK for a while, but my eyes tire quickly. I bought these strong reader glasses, which does help a little.  

But it all limits my driving.  I do OK around town, but the droopy lids really do interfere out on the highway.  I hate being so dependent on Guy to take me everywhere out of town.  If I want to go spend a half a day in Walmart, I don’t want to be reminded that he is out in the car waiting.  Oh, well, maybe one day…….

One of the other side effects is increased blood pressure.  It is not bad, and I don’t know it is elevated unless I take it.  I don’t really worry about it since the cardiologist told me to not worry about the “numbers” – go more by how you feel right now while under cancer treatment.

The other side effect is the “d” word.  It is occasional – unpredictable – but I manage that with Imodium. It does affect my appetite, and I eat about half of what I did before.

So REALLY, when you consider all this, I’m really blessed. The side effects could be so much worse.

Well……I’m back!  I knew it would happen….the sandman overtook me, so I leaned back in my recliner with my neck pillow and blankie and slept the rest of the morning!

I guess no news has been good news.  I’ve been doing really well – at least until someone tells me differently. I had an appointment this afternoon with the local oncologist.  He still is very encouraged, and my lab work looked good.  Guy asked, given the great results, what does the future look like. Dr. Page said that these mutations are hard to predict, but this medication could work for months to years. Eventually, the cancer would more than likely pop up again, but at that time, we would just attack it again!  He said this particular medication could target and reduce the number of cancer cells enough that my own immune system would take care of the rest, but this would be extremely rare!  I couldn’t help but think “Or I could be divinely healed!”  I know it would take a true miracle for me to be completely free of it, but even if I got several more years, I’d truly be happy.  Like about 20 more!!!  πŸ˜€

Just to review the drastic results, look at the pictures and dates below. Or if you can't take looking at these pictures, just scroll quickly past.
Jan. 28

Feb 12 You can see how aggressive this stuff is!

Feb. 25

March 8 (one day after starting Mekinist)

March 8

March 8

March 12 not quite a week on the med and you can already see the size of the tumor decreasing and some pink areas.

March 16 - much lighter forehead

March 22 -  three weeks and one day on the pill

April 4 - about 1 month of Mekinist - tremendous difference!

Last Thursday

I’m just about ready to start my 3rdmonth of Mekinist. It will come tomorrow.  Here is how it comes by UPS.

One of my immediate goals to reach before summer was to get my quilt room in order.  Bless Mark’s heart, the last time he spent some time here, he took my bookcases downstairs, and the other half of the garage’s boxes downstairs.  Anything that said “quilts/fabrics” on it went into the large area that was to be my quilting room.  The other boxes went into the storage room.  This left a tiny little pathway around the edge of this large room. I decided to tackle the left side of the room near the bookcases first.  The first few boxes with the fabric were pretty easy.  I knew where I wanted it all to go.  I couldn’t work for more than 1-2 hours at a time.  As I progressed, I gained more stamina.  Here’s a picture of the left side of the room.  It's pretty much put together.

Here was the other side of the room!  πŸ˜€

This took a lot longer, because most of the boxes were full of sewing “stuff”.  Oh, where to put all that???  How to organize it???  I’m still not through, but I’m getting close.  There is light at the end of the tunnel.  I want to get it so that when Jeannine and the girls come, they will have some large space in which to play.  I want to take down the blowup beds and make a little sitting area with the couches in the other end of this large room.  (behind me)
Here’s how it looks now – just about there!

This all made room for a normal guest room upstairs where I was originally going to put the quilt room.  Here are some pictures of the nice quest room that I can’t wait for someone to stay in.  

Actually, my sister will be the first, because she is coming this Friday for a week. She was supposed to come a couple weeks ago, but she got sick.  I talked with her today, and she sounds sooooo much better!!

Guy has been working out at the farm almost every day.  He is cutting trees that have grown up here and there with a chain saw.  Then he has to drag them by hand into a pile.  All I’ve been hearing about is how he needs a tractor.  He has been looking and looking.  Used ones like he wants are really hard to come by because everyone else wants one that size to work/piddle around on their farms.  He finally found one he thought would work for him and that he could afford.  I don’t know about the “afford” part, but I guess he does need one.  It was delivered this morning, so he is so excited.  He will store it in the container he has out there – it just fits!

The mess out there on the farm is pretty much cleaned up – as far as the metal goes.  The cement blocks are still everywhere, but at least it doesn’t look as bad as it did. We’ve had a couple tiny rains – enough to get the pasture grass to grow again.  The guys fixing the fences and gates have finished their work, so the steers are due to go in tomorrow – 130 of them.  The only thing really left is to get power to the north water well.  They are working on that. Power to the south well was spared, thankfully.  Since the area was considered a disaster area, we may get some financial help for the fence repair.  Guy has filled out the paperwork, and they have been out to survey the damage, so we are keeping our fingers crossed.  So far, there has been a lot more “out-go” than “in-come.”  πŸ˜Ÿ

And the WIND!!!!! Oh, my!!! I remember Kansas as being windy, but I don’t ever remember it being this bad.  It has tipped semi trucks over on the east/west interstate!!  I hope this is an unusual year for the wind.  When you have to hold on to your stocking cap to keep it from blowing off, that is WINDY!!  I wouldn’t even THINK of attempting to keep a wig on!!!  I can’t really wear a wig anyway, because I still have about a narrow 2” open area just above my forehead that is just too tender to wear anything very tight.  It is healing but EVER SO SLOWLY!!  This summer, when knitted and crocheted hats are too hot to wear, it will be a challenge.

In about 3 weeks, I’ll be going back to Kansas City for my CT scan. I’m try not to get nervous about this one, but it will be soooo important.  Sometimes I look in the mirror, and, except for the fact that I have no hair (well I do have some growing back in on the right half of my head), I almost look normal.  I want to relax and not worry about it, but I keep wondering if this pill is working on the inside like it is working on the outside.  And then, I know that even if it is, I’m not out of the woods.  It’s like that boogy-man that is always lurking around the corner somewhere – just waiting to jump out and GET YOU!!  It’s a feeling that never leaves you – some days it is better than others – but it is always there…..lurking…..lurking……  So many of my devotionals speak to this….not trying to plan my future all out, not trying to be in control, focusing on Him – His presence, His peace.  Oh, what would I do without Him?????

Without Him I could do nothing
Without Him I’d surely fail
Without Him I would be drifting
Like a ship without a sail

Without Him I would be dying
Without Him I’d be enslaved
Without Him life would be worthless
But with Jesus thank God I'm saved

Oh Jesus, oh Jesus
Do you know Him today
Please don't turn Him away
Oh Jesus, my Jesus
Without Him how lost I would be
Without Him how lost I would be