This has been a rough week and a half.

This has been a rough week and a half.  Usually I don’t stay down – I can pick myself up pretty quickly.  But the last few days have been difficult.  I’ve almost been able to seethe cancer spreading over my head.  Even though I have the new medication, it is not going to be another “Mekinist”.  I know I’ve only been on it for three days now, but, in reality, the outlook is rather bleak.

The Fair starts in another week.  Those of you who know me, know how much I love The Kansas State Fair.  If I get to feeling like I can go, I have to realize that this will be my last fair.  I just know it will be.  

I had hoped and planned to host our LRHS reunion in 2020 In our home that is actually big enough to do that this time.  I was looking forward to seeing one person that was not able to make it last year.  I’m quite sure that is not going to happen. I’m just hoping to get to celebrate Christmas this year.

I’ve started my “Things You Need to Know After I’m Gone” lists for my kids and for Guy. Just practical things like where to find this or that, like passwords.

It doesn’t mean that I’ve given up, or that I’ve stopped fighting. I guess when you don’t feel particularly good, it is hard to keep the cheerful positive attitude.  I’m used to feeling pretty good along the way.  My side has really been hurting the last 3 days, and my swollen eyes make it so hard to read; my sore fingers make typing and retyping so arduous.  

I guess when you just get sick and die or die in an accident, you don’t have all this lead time to think about it.  The always needing to have my ducks in a row and be organized is driving me a bit crazy.  The fixer in me is trying to fix what I do have control over.  I just hate the thought of having to leave lots of odds and ends undone for those I leave behind.  But then, probably no one cares anyway!  J

I don’t mean to complain, but sometimes I just have to let it all out, and I guess this is good a place as any to do just that.

I need to go to bed and perhaps tomorrow will be a brighter day. Love y’all!!

As always……I’m in His hands…….

Some good news, some bad news….

Some good news, some bad news….

Tuesday

Tonight is probably not a good night write this blog.  I really need to process all that has been going on today.  But perhaps by writing, I can find spiritual strength and in turn, physical strength as well.

Wednesday

Well ,I didn’t get far last night. I guess the day was just too long with the trip home from Kansas City. I’m going to try the voice-to-text function, because my fingers are just too sore to type. Or at least, it slows me down too much. I’ve never really used this before, but I’m finding that it is pretty accurate. It would probably be more accurate if my nose were not plugged up, and I could speak with my normal voice.

Thursday

We arrived at Marks house late afternoon on Monday. He was not home. He was in Canada and thought that he would be there until Wednesday. However, he was able to come home, so we were able to see him after all. He got in in the middle of the evening. We took the boys out to eat while Amy went to the airport to pick him up.

As I was getting ready for bed it was pretty late, but Mark[s ex-wife sent me a private message. It was just the sweetest message. I have not had a lot of contact with her for a while, so it met a lot to me when she wrote. When you need a pick-me-up the most, God sends some someone along to meet that need. Sometimes, we don’t realize that God is prompting us to make a phone call, send a message, send an email or perhaps letter or a card–we don’t realize how much it does for the person who’s receiving that. (Note to self: always follow through when you feel those promptings.)

I arrived at the doctor’s office in plenty of time, but they had me down for lab being drawn from my arm rather than my port, so it took a bit of time to change that in the computer since the infusion center accesses the ports – not the lab.  It doesn’t make sense to have to stick me twice.  So, when I got to the infusion room, I was kind of stuck in the back of the room.  I waited and waited, and now it is 15 minutes past when my scan was to start. Finally, someone from another bay asked what I needed, and she said she would get my nurse. She was an older lady I had not seen before.  She apologized for being late, but said I was an “add-on” to her load, and she was working me in.  Note to nurses and all people everywhere: NEVER make your client feel as if they are an “add-on.”  You should apologize for making them wait, but do it with a smile and leave it at that! Got that off my chest!

I made it to the CT room OK and got my scan, but by that time, it was time to see Dr. Powers.  I knew the results of the scan would not be ready, and that is what I was there for! Anyway, the first thing Dr. P showed me was a paper that showed the results from the tissue study.  The cancer had mutated again, BUT there was only ONE mutation.  The drug recommended was “weakly” recommended – not like the Mekinist for the 1^stmutation.  However, he was willing to let me try it if I wanted.  He didn’t seem very positive at all, but he didn’t the last time, either. I guess that is the way he has to be in order to not give false hope. I said, “Let’s go for it! I’m not giving up yet.” He said he had no assurance that I would be able to get it, first of all, and IF I could not, or IF I got it, but it didn’t work, he had no other options, and I would need to look at contacting hospice.  He said he wasn’t giving up on me, but he had no other options to give.  I told him my God was a big God, and I had so many people praying.  I’m not sticking my head in the said and denying reality – I know that I’m probably not going to beat this type of cancer, short of a divine miracle of God) but I would like to have as many more months as I can get.  

The nurse was able to pull up the results of the CT scan on the computer by then.  There was no written report yet, but he was able to bring up the previous scan and compare the difference himself.  The previous lesions in the lungs were back and enlarged.  There were two significant new ones. At least the liver was clear. Praise God for that!  Dr. P said to go ahead and stop the Mekinist now since it was not helping, and the side effects were too great.

I did go ahead and ask him, point blank “Suppose I don’t get the medication, or it doesn’t work?  How long?” He, of course, would not commit himself to a time frame, but he said, “Weeks to months.”  Months was what he told me last time, and I made it almost 6 months on the Mekinist.

I left there pretty dejected.  We went to eat with Mark and Amy, and Mark was adamant about me getting back on this Afaya supplement, and I promised him I would.  Interestingly enough, today my pastor sent me this link telling all about this.  I thought it was to be rather secretive, but apparently the word is out.  https://www.gbtribune.com/news/business/from-flower-to-treatment-/  So perhaps there is more to this than I first thought.  We’ll just have to wait and see.  BTW, Lyons is the next town west of LR, and Sterling is just south of Lyons.

So, there are the facts.  How do I feel about all this?  Good question.  I’m trying to stay positive.  The reality is that I need to get my affairs in order.  I pretty much have them that way anyway – will, etc.  I’ve thought about – even before all this came up – of selling my Bernina 830 LE sewing/embroidery machine.  Jeannine will get all the sewing fabric, machines, etc. but I’m not sure she will want my big Bernina.  It is complex enough that you really need to take classes to learn it. By the time her life is in any kind of order to take that on, it will be outdated.  I have to carefully pick and choose what I work on now because of my fingers.  This I’ll-get-to-it-some-day isn’t going to work now.  The other thing is that as long as that expensive machine is sitting there, I feel compelled to work on SOMETHING. But some days I want to just sit and watch Jeopardy…..or take a nap.  Truthfully……quilting no longer buns a fire in my belly that it once did. There are other things to deal with. I can’t get to the guild meetings like I used to to get inspired.  I feel guilty with all that fabric, books, patterns, unquilted tops, etc. and here I sit, typing on a computer.  What to do…….what to do…… sigh!

I need to clean out a lot of clothes – and just “stuff” – stuff you don’t want your husband or kids to have to wade through.

I know this sounds rather woebegone and negative.  I guess I’m having a big dose of reality setting in.

On the way home a dear, sweet friend from my Alabama SS class called me. Again, God prompted someone, telling them what I needed.  She prayed a beautiful prayer for my healing.  She has called before and prayed with me.  She is ABSOLUTELY CONVINCED that I am going to be healed. All you need when praying is faith the size of a mustard seed, but this lady’s faith is the WHOLE TREE!!

Later in the evening, I was walking Annie, and I looked down at my feet and thought, “Thank you, Lord, I have feet and legs that allow me to walk, I have hands that work, etc”.  You know, I really am blessed.  I have a mind that still works – I’m not like one of my friends that has brain cancer and sometimes doesn’t recognize her husband (breaks my heart!). I have a husband that loves me and takes care of me.  I have children that love me and call and talk. I have beautiful grandchildren that are healthy and smart and doing well in school.  I have a group of ladies in my Bible study that are SO loving and supportive -  the whole church, actually.  I have a wonderful, caring pastor who, just today, visited us in our home again. (Guy and I tried to remember the last time we had a pastor come to our home on a pastoral visit and could not remember one. I think this is the 4^th visit since we moved here)

It helps to have someone to be brutally honest with and just talk it out. He asked if I ever asked why. I said “Oh yes! I’ve asked that question several times.”  But there’s no real answer to that question. He said, “I’ll tell you about the time I asked why. Their first daughter died as a baby, and he said if I asked why and God answered my question, it would not bring my baby back.” It doesn’t matter what the answer is, the issue still remains: the baby is gone.  It brings no fulfillment.   I had never thought of it that way. It certainly makes sense. It does not change the situation at all. I was just thinking about that very question this morning. I’ve lived all my life as a Christian - as a good girl, and it just doesn’t seem fair. Well it isn’t fair! But that’s not how Life is or how God looks at things, so it’s really just time wasted, and it doesn’t get you anywhere. It doesn’t solve anything.  It just makes you feel bad. You know, since my parents both lived to be in their 90s I just figured those longevity genes would be transferred to me. And they probably would have if this free freaky monstrous thing has not happened. There’s just no answer to that. There’s no rhyme or reason. For some reason, I was just chosen to bear it, so I have to make the most of it. There undoubtedly is a reason, and I don’t really need to know that reason. I just need to, as my pastor says, “don’t waste your cancer.” So that is what I am trying to do. I’m trying to make the most of what I have and try not to concentrate on what I don’t have. You know, all of us are just passing through this life. All of us are not going to be spared the end result of anyone’s life–unless the Lord comes back and raptures us, we are all going the same direction, some more gracefully than others, I guess. Some days, I do it more gracefully than others. But as I look at the days that I may have, or not have, I have to prioritize my situation which involves looking at reality which is not particularly exciting. For instance, I look at the Kansas State Fair that is coming up in a couple weeks. In my growing up years and my adult years in this area, I have attended the fair every year.  I just love the Fair!  This seems like such a petty thing but this could very well be my last Fair I get to attend. Now when I look at that in terms of what I’ve just talked about the above, that would be very low on my priority list, but it’s just trivial things like that that come to your mind, and is it time doesn’t seem very trivial when you remember the memories you made with your family there.  Last year we as a family, Jeannine, Sofia, and Maya and Mark and Amy were all able to attend the fair together. It was such great time. I can’t allow myself to start thinking about this could be my last thisor thatbecause that’s just the destructive rabbit trail to run down. And there are certainly plenty of those rabbit trails here, there and yonder beckoning you to get off track. I’m not going to allow that to happen.  My devotional book constantly reminds me to come back and focus on God’s presence. In this life,it certainly is the only sure thing. I know He will never leave me, never forsake me and He holds me by my right-hand–that’s all scripture.  And that’s the only thing I know for sure I can bank on when everything else is fleeting

I’m going to include some pictures at the very end of this blog, so if you are squeamish or just don’t want to see them, just don’t scroll down past the end, They are there for those who do wish to see them, and  many of my nurse friends do–we are just that way. J

If you wish to pray specifically for me here is a list of specifics Pray

for my sinuses. That they will clear and my nose will stay open without the aid of medication sprays which I don’t want to become addicted to. Synex is the only thing I can use that keeps my nose open long enough for me to sleep, so I only use it at bedtime and don’t use it during the daytime. The only thing that opens my nose during the daytime is for me to standup. I know that sounds crazy, but sometimes when I’m sitting my nose will open for a few seconds, and then I feel this wave comong and it plugs up again.

Pray for my fingers to heal. They are very very tender. Each time I bump something with them, it almost brings me to tears. Obviously, I can’t play my keyboard in church, and I miss doing that very much.

My nails are not splitting.  It is the skin next to my nail that splits.  Then this Mekinist just attacks any broken skin.  The skin is growing back up over my nail.. If you could look closely, you'd think you could just clip off that skin, but it is ALIVE.

Please pray for my very swollen eyes.  Don’t know why that is back again, but it is miserable – can barely see or read.  And pray for this miserable hem(^%$#( to go away and stop bleeding!!

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Pray for me to be able to get this medication and then pray that it works. Also pray that the side effects are not terrible. When I asked the doctor about the side effects, he said they were not an issue. He kind of brushed that off. But before I left, they printed out a copy of the medication, how to use it, side effects, etc. One thing I didn’t have to worry about when I was on Mekinist was my blood counts. It did not affect that. In fact Hgb even increased while I it. But I notice with this new medication that it does affect your blood counts, both red blood cells in the white blood cells. Being immunocompromised again means I’d be subject to getting infections easily and have to stay away from people who are sick. It also has listed skin rashes as a side effect. I don’t know what that entails, but I certainly do not like how this Mekiniat treated my skin – rashes and itchiness. I just glanced at the side effects quickly, so I don’t remember seeing a dry mouth there, which certainly affects ones appetite.

Pray that I can go back to resting well at night. That never was an issue for me until my nose started plugging up. Right now, I’m having to sleep propped up on pillows–with the aid of the nose spray.

Pray that God’s peace will remain with me, and I will not become fearful

. Pray that I will continue to look for ways that ways I can help others and be a blessing. I don’t want to drag others down with my cares, because I certainly am not the only one in the world that has cancer or has a problem. I want to be attentive to others that have needs and pray for them.

Oh yes, please pray for my left side. Dr. Powers did not address that when I was there to see him because the written report was not ready yet. Once that is written and posted on MyChart,, I’ll be able to read it and see if there is Indeed something more going on there it has become quite painful when I make certain movements or when I cough. The cough is not related– I don’t think – to the lung lesion, but I it seems to be more in my throat, which comes from these medications that I’m using. Those things go to your throat and  sometimes make it sore or makes it tickle and consequently cough.

So sorry to take so long to get this out!

And as always…..I’m in His hands……

Scroll for more pictures.

This is actually looking pretty good.  If you were to look at my face straight-on, you can tell the left side of my face is swollen. somewhat  When Mekinist took care of all that purple, it was not swollen at that time.

That which is on my forehead is spreading fairly rapidly.  It is starting to drain more also.  I haven't been covering it up, because I hoped it would dry and fall off - don't thin that is going to happen.  It is starting to leak through my little caps.  Can't wear my wig because the edge goes right over that spot.  It all itches, too.  You can tell this is a mutation, because it doesn't look or act like that purple stuff that was on my face.

It's been baby piranhas this week....

You know how piranhas (fish) just devour their victims?  Well I can imagine that baby ones just nip and bite and nibble at you.  That’s the way I’ve felt this past week.  All the nips and nibbles are just a total aggravation!

I had somewhat of an allergy that would have ordinarily caused sneezing and a runny nose.  I know how to treat allergies – had them all my life.  But this Mekinist dries everything out, so it just turned my sinuses into a glue factory.  I thought I was getting my annual sinus infection, so the doctor gave me an antibiotic. I don’t know if it really helped or not It didn’t act like the typical sinus infection.  But then there is nothing typical about my life anymore anyway. I was also taking Mucinex DM to open up my sinuses so they would drain – didn’t really help.  If I were up and moving around, my nose would open up.  If I sat down or lay down, my nose would plug shut.  You might try nose breathing under ordinary circumstances, but not while taking Mekinist, which already dries your mouth out so bad your tongue sticks to the bottom of your mouth, literally!  Guy kept telling me how badly I was snoring at night.  I’ve never been a snorer. But he recorded me one night, and it was absolutely SHOCKING!!  At one point, I asked, “Did I die?!?!” because there was such a long time with no sound whatsoever, and then this gigantic SNORT!  SLEEP APNEA!!!!  No wonder I feel so tired all day!  Since I cracked that last rib, I’ve not been able to sleep on either side, so I only slept on my back.  Well, now I can’t sleep on my back.  There is nothing left except to sleep sitting up. I’d do a bunch of leg exercises until my nose opened; then I’d quickly jump in bed in hopes of getting to sleep before my nose plugged again.   Guy finally talked me into using Sinex 12-hr nasal spray.  I’ve avoided all those nasal sprays like the plague all my life, because I heard such awful things about getting attached to them – with the rebound affect.  Guy said he used it and didn’t get any rebound.  I was desperate enough finally, and used it before going to bed.  Ahhhh…..breathing again!  It worked pretty well all night long.  Sleeping sitting up with your nose unplugged is not bad – until your back starts to hurt. You remember that spot about 2” radius on my back that was shingles?  After lying propped up about so long that spot goes to aching.  I’ve got a little travel pillow I put on the other side of my back, and that sometimes helps a bit.  But the bottom line is, me, who has never had any trouble sleeping, is having trouble sleeping.  L  Sometimes during the day, when I have trouble napping because of plugged nose, I even use the Snex during the day. Oh, yes, I do!

Early last week my right eye was swollen and red.  Guy said, “You’ve got pink eye.  When our cows would get pink eye, they would go blind.”  Oh, thank you very much!  So, I went to the walk-in clinic, and sure enough, she said I had pink eye, and gave be drops to use twice a day.  She also said to use Flonase nose spray and an antihistamine – like Allegra.  That has helped a bit with the plugged issue, but now my nose wants to run all the time. That wouldn’t be so bad if it were not for the big sores left in both sides of my nose (after the fever blisters) that cause 3-5 nose bleeds daily, and at least one in the night. (I should have bought stock in Puffs tissues!)  

Also, because of my terrible dry skin, the areas of my fingertips, beside the nails, have cracked. Right now, I have one on my 1^stfinger of my right hand and one on my left ring finger.  

I have two more trying to break down.  I’ve used about every kind of lotion known to man.  My sister suggested a cream used by breast feeding mothers. I’ll look for that the next tine I’m in Walgreens. These aren’t just ordinary cracks.  They swell up, turn red, and are extremely painful.  If I accidently bump one, it almost brings tears. I keep Bacitracin and bandaids on them. Needless to say. it has brought my hand applique to a screeching halt.  I was going gangbusters on this one.

I started out trying the author’s method of applique where you sew a light weight interfacing to the front of the piece, cut a slit in it (interfacing) turn it and stitch it down.  I just couldn’t get my curves nice and smooth that way, so I reverted back to my way – needle turn where I can get my curves smooth and my points pointed.  But of course this requires all my fingers to be in tip top shape with no open areas. I was watching Alex Anderson today do a demonstration on appliqué.  She was using this author's method. as her preferred method.  She said she never could learn to needle-turn.  I thought, "Wow!  There is something I can do that Alex Anderson can't do!" 

We won’t talk about the “dia#$%$#” word that has caused a “hem@%##@” UGH!

My appetite is still in the tank.  I’ve lost about 35 lbs.  When you have hardly any saliva, it is very hard to chew meat and lots of other dry things. It seems that all tastes are intensified, so spicy foods are SPICY foods – and tend to give me heart burn.

I just bought a case of Colorado peaches that need to be put up in the freezer.  Thank goodness for disposable gloves!  These peaches are SOOOO good.  I thought when I left Alabama, I’d never get another good peach, but there is this one place in CO that produces them, and I get a case every year.

One thing about having this eye trouble, I can’t really read much for any length of time, so I’ve been catching up on The Quilt Show programs with Alex Anderson and Ricky Tims and my Audible books. My vision is blurry and everything has a shadow (see double).  Hope that clears up soon.

Have you ever owned or felt a Dooney and Bourke pebble leather hand bag? They are beautiful and very sturdy handbags.  I just love them – never wear out and look just like they did the day you bought them. That is the best way I know to describe my skin in places – across by shoulders and all of my back.  Perhaps it is not quite as dry as that leather, but it comes close.  The pharmacist said that 87% of the people on this drug have skin issues.  Thank goodness for my trusty backscratcher!!! 

Thankfully, most of my rashes have subsided.

Mark’s golden retriever, Abby, finally got better, and Amy got home and came by to get her. Mark got home the next day and sent pictures that she was doing well.  That’s a concern off my mind.

I don’t know if this is a side effect of Mekinist, but I’m cold all the time – more than I used to be..  I don’t mean just cool.  I mean long-sleeve shirt, and a sweat shirt over that.  And sometimes sitting with a blanket over me.  In the SUMMER!  I can’t even enjoy my crop pants and sandals!  That is not fair!!  Most days I spend time out on the deck soaking in the sun. 

I sit out there and enjoy all the many shades of green.

Or the big ole thunderheads that form.

 It seems to me that 74 degrees in this house here is not the same as 74 degrees in the Alabama house.  I don’t know what brand of HVAC this house has, but it is a jim-dandy one!  When it blows out cold air, you know it. Especially in my bathroom.  There is a long vent right under the sink.  You can’t shut it off like most vents. I have a rolled up towel stuffed against it and my bathroom rug, and it still gushes out of there.  You cannot get your face washed and teeth brushed fast enough while it is off. I bought a magnetic thing-a-ma-jig that is supposed to go over it and shut is down, but I’d have to lay on the floor to measure and cut to fit, and I just haven’t done that yet.  The same thing is in the kitchen – right under the sink.  The one in the bedroom, I just have a plastic bag of clothes sitting on it, and it still manages to eek out into the room.  The basement is a whole other story!  Aye-yi-yi!  You could hang meat down there!!  Guy’s got a plan for down there as soon as his carpenter friend can come help him.  He built new steps to go from the hallway into the garage, and now you can just walk right up them instead of having to climb into the house.  What a pleasure that is!!  And it has a handrail, too.  Anyway, Guy is the hot-bod.  He’s in a t-shirt and shorts sitting in front of his fan.  Oh, that makes me shiver just thinking about it!! At night, Guy has a sheet with his feet out and a fan directly in his face.  I have a sheet, 2 blankets, the bedspread, and another blanket – and a sweatshirt over my PJ top.  The thermostat automatically turns the temperature down 2 degrees for the night. When I take my shoes and socks off to get into bed, my feet are ice cold – not just cold – ICE cold!!!  I have these thick, fuzzy socks I have to put on.  I really don’t like the feel of socks on in bed, but I can’t sleep with cold feet.

I’ve had these two scabs on my upper forehead with redness and scaling on my forehead.  

I bumped one of those scabs this morning, and it fell off.  I thought, “Oh, no!”, but it is just red underneath it – SOME healing going on it would seem .  

These seen to just be superficial, and the one left is just dried oozing that occurs occasionally.  The area on my cheek has not changed all that much.  I think there is a little nodule just above where they took the biopsy.  

I guess this Mekinist is continuing to work. It is a least keeping it from getting much worse – I think.  I am concerned about this next CT scan – the 21^stof Aug.  If the mutation is doing this on the outside where I can see, it really makes me wonder what is going on on the inside, where I can’t see – aka liver and lungs.  I’m trying not to cross that bridge before I get there.

But in spite of all, I really don’t feel all that bad, and I’m still walking each evening!!  Annie sees to that.  She sits and stares at me, then whines, then eventually barks and paws at the back of the lid of my laptop.  She doesn’t take no for an answer.  The batteries are shot on our scooters, so I can’t cheat and ride.  That’s good – I need the exercise.

Well, I’m sorry I haven’t given you much to giggle about this go round…..maybe next time.

And as always…..I’m in His hands…..