Wednesday, September 19, 2018

Another roller coaster ride.....

Well, I guess I spoke a little soon in my last blog about feeling so good….

Monday morning I woke up and, instead of being hungry for breakfast (which is the only meal of the day that I’m actually hungry for), I wasn’t particularly hungry.  As I was preparing my bowl of cereal, I suddenly felt very weak and had to sit down. I headed for the bathroom, and I thought I might end up in a pile on the bathroom floor.  I sat on the toilet, but couldn’t get my head higher than my knees.  I broke out in a sweat and got nauseated.  I knew I had to somehow get to the bed to lie down.  I called for Guy to come help me.  I just laid out flat on the bed for a while.  My BP was 117/71 lying, 89/69 sitting, and 61/45 standing.  I knew right away I needed fluids.  I called the McPherson infusion center, and they said to come right in.  Once they got my fluids going, I fell asleep and slept the hardest I had in a long time.  It’s amazing what a liter of fluids will do for you.

Today, I had a 2:00 appointment with my regular PCP – my yearly physical at Hutch.  I started out well, but as the time wore on, I realized that I wasn’t up to par.  I wanted to go to Kohl’s, and Guy dropped me off there.  I could tell things weren’t quite right when I had to sit on the bench inside the door for a while.  I got a cart, and slowly walked to the lingerie department.  I couldn’t find what I wanted, so left empty-handed.  I really wanted to go to Hobby Lobby to get a needle threader – not one of those cheap wire things, but they didn’t have the kind I wanted.  I just didn’t feel like looking around, as I loved to do in Hobby Lobby, so I bought a little $1.99 package of plastic thimbles and headed for the car.  

Man!  I hate this not being able to shop and enjoy it!   We ladies just love to shop!  Right??? I guess that “spell” from yesterday took more out of me than I realized.

Well, anyway, I went onto my doctor’s appointment.  I had my cap off in the room, and I could tell he was kind of shocked when he saw me.  I don’t think I’ve looked this bad when I’ve been in to see him before.  I told Guy just this morning, “It’s too bad when you feel so good but look so bad.”  Oh, well, he reassuringly told me I did not look bad.  Bless him!  He’s always so good to tell me encouraging things.  Anyway, I think Dr. Jackson didn’t think my medication was working.  I had to tell him that I thought it was because all that half of my head had been covered with scabs, and now a lot of it was just pink skin.  Now, granted, what is left is pretty awful to look at, but after I told him the strides I had made (rib feeling better, two fingers healed, feeling good most of the time), I think he didn’t feel so bad.  I was anxious to see my lab work.  Even though some was quite low, there was some positive numbers.  My WBC went from 2.2 to 2.6 (not great, but at least going in the right direction).  My Hgb went from 9.3 to 9.7 (still low, but better).  My AN went from 814 to 1180.  Now that made me happy, being not as susceptible to infections). What made me do a happy dance was my lipids – cholesterol, triglycerides, etc. They were ALL NORMAL!!!!  Haven’t see that in 40 years!!!  Of course, I know it is due to eating like a bird and mostly eating at home.  Every doctor has threatened to put me on cholesterol-lowering medication, and I’ve always refused due to the side effects.

I showed him the awful rashes that the mosquito bites had caused, and he gave me a stronger steroid cream than the over-the-counter stuff.  So I’m very hopeful that will relieve the itching – and itching and blisters on my hands, too. (SE from the medication).  Beow is my forearm - very lumpy, bumpy, and red.
Another angle of my arm.
And the rash on my knee.

I’ve always been so LOVED by the mosquitos – if there is one in the county, it will find me.  However, since being on this medication, I had not had one bite all summer until this past week when I got one on my arm, 3 on my back (through a thick shirt!), and two on my right knee.  I’ve never had these rash-reactions before, so I know this medication does NOT like mosquito bites.  Mosquitos have never bothered Guy before, but these Kansas big black monsters have nearly carried him away!!  He keeps slathering the lavender essential oil on, but is still miserable, bless his heart!  Well, I’m hopeful this cortisone cream will do the trick for me, and let me sleep.

That’s just a quick update for the 1stpart of this week. Hopefully, I’ll gain some more strength as the week progresses.

Oh, look what our neighbor brought us again today!!  SO delicious!!

And as always……I’m in His hands…..

Sunday, September 16, 2018

A feeling good week.....

This is the 1st time I’ve felt good for a whole week. Someone must have had a direct line to heaven about my side/rib.  About Tues, it just pretty much quit hurting – at least all the time.  It remains sore, but I’m not thinking about it like I was. What a blessing that has been!!! Until the last couple of days my nose has been so much better, too.   The big sores that covered the inside of my nose are gone.  There are still some small ones that remain, but it is not keeping me up at night like it used to do.

My eyes have remained swollen, but the last couple of days, they have at least eased a bit by bed time.  If I sleep on my back (which I can do some, now that my side is better), they do not swell as bad, but if I sleep on  my right side (which is when I get the best sleep), I wake up with the right one almost swollen shut.

The biggest issue now is ITCHING!!  My hands itch to beat the band!  Sometimes, I’ll get little blisters along the sides of my fingers, but mostly they just itch!  Last night I was up, I think, about 6 times – nose plugged, and I had this tremendous itching attack – EVERYWHERE!! I would have taken a Benadryl, but it was after 3:00 am, and since they last about 6 hours, I wouldn’t have made it to SS or church. I did take one after lunch, and I believe it did help.  But I’ve slept most of the rest of the day away.

Thursday was the day we went to the Kansas State Fair!!  I have a regular doctor’s appointment next week so needed to get a fasting lab done ahead of time.  That’s what I did first, then we went to MD’s for breakfast and headed to the Fair.  We took a chance to go into the handicap parking lot, hoping to find it wasn’t full at 10:00 in the morning.  We got the last place available.  Guy unloaded my scooter. (He had put a new battery pack in it, and it worked like a champ.)  At two of the gates to the grounds, there were tents with scooters you could rent. I think they were $75 a day.  They were doing a land-office business.  I wish I knew the actual statistic, but I would say for every 3 adults, there was one on a scooter.  Some company is making a killing on this baby boomer generation. I was glad to have my own.  It is kind of pain if you get into a crowd, but thankfully, it was not a terribly crowded day – at least not to start with. I went to the domestic arts building first to look at the quilts.  I took lots of pictures, but I’ll do a separate blog and include the pictures there.  It was kind of a pain getting around in a building with the scooter, but I did lots of going forward and backward down the aisles. 

Here  is Guy standing by this cute dog house.

And look a this life-size metal elephant.  RTR!!!!

After I left there, I took off for the Birthing Center, on the opposite end of the grounds.  I wish I could describe the immensity of this place for those who have never been.  If I had not had the scooter, there would have been no way I could have walked anywhere.  Anyway, the Birthing Center was kind of sparse this year.  There were 4 cows, each in her own stall, but nothing was happening.  

The mama pig was sacked out, as were her 10 piglets that were 4 or 6 days old.

In the center of the room were several baby goats, calves, and sheep that were already born.

From the Birthing Center, I drove through all the vendor booths under the grandstand.  

 Didn’t see anything new, but I did get a piece of chocolate fudge.  I just now remember that – I wonder what I did with it! Oh, well, I’ll have to look around for it.  The rides and the carnie booths were not open and operating until after 3:00, so I just drove down the midway, taking in the sights, sounds, and especially the smells. The midway has that very distinct smell of onions cooking.

Ye Old Mill is still operating – a very iconic ride. 
It’s probably been over 50 years since I rode it.  After getting into the boat, I would put my head on my lap and shut my eyes – to keep the wet strings from hitting me in the face and the scary creatures from jumping out at me – and of course screamed my head off.  Oh, those were the days…..

So many familiar sights…..

 Guy spent most of his time looking through the farm equipment.  He had a Pronto Pup for lunch.  I had an old dry non-melted-cheese burger on a cold bun. It was $5.75, and she kept my quarter – maybe a self tip??? Idk…… I couldn’t choke more than about half of it down. But then I had what I came for – a funnel cake – a batter, drizzled into melted fat and browned.  Then, served with powdered sugar – which promptly blew all over me in the wind.  But I ate and ate on that thing – got it about 2/3 gone.  

Thankfully, I had my water along. I finally met up with Guy, There are 3 large buildings at the west end that have vendors of every kind in them. He was sitting on a bench between them, so I left my scooter with him, and decided to try walking through the last two buildings.  It was getting crowded by then, and I knew I could get through them much more quickly on foot, and I was tired of sitting all day – needed the exercise.  Again, the vendors were pretty much the same in pretty much their same places.  One was a double-wide booth with Brother sewing and embroidery machines.  I saw a Brother ScanNCut.  I asked him what his Fair special was on it.  He said it sold for $600, but he was taking 20% off at the Fair.  Wow!  I told him that HSN just had their Today’s Special Value, selling the DX model for $299 and they included $299 worth of designs.  He about fell out on the floor.  He said, “That’s the new model, too.  I can’t even buy it whole sale for that price."  So I guess the deal on HSN was a really good one – kicking myself for not getting it for $299.  I've looked and looked at those and several times have come within a hair of getting one. It would be nice to cut out applique shapes from fabric.  I’m not really big into card making, which is a lot of what they are used for.  

I went on around to the other booths – mattresses, kitchen tools of all kinds, spas, glasses cleaner, super-doper aloe cream that would cure a myriad of skin disorders (almost bought that one, but couldn’t pull the trigger on $60), kitchen cabinets, fancy cookware, bamboo sheets, home TV antennas (get rid of your cable – would work if you didn’t live in the boonies), jewelry, spices, humming bird feeders, slicer/dicers, knives, leather goods (purses, wallets).  You name it, someone was hocking it!!  You had to walk down the middle of the aisle, with a very disinterested look of your face, or you might be grabbed and takin’ in!   I did stop at this one booth where this guy has every kind of scissor, nail cutters, tweezers, etc.  They had a whole section of magnifying glasses.  I bought one that is about 5” in diameters and clips onto whatever.  I clip it onto my lap desk, so I don’t have to spend over 30 minutes now to thread a needle.

By the time I got about half way through the 2ndbuilding, I was needing to sit down – just got weak all of a sudden, so I didn’t spend as much time in that building.  By that time, it was about 3:00, and I figured I had seen what I really wanted to see. Guy had been sitting, people-watching for about an hour, so he was ready to go.  Before we went through the exit gate, he took this picture of me.  I should have taken that fanny-pack off, since it made me look a little “thick” in the middle!  J  Good-bye Kansas State Fair……you have been a good friend for a life time……

 I would love to have gone to Hobby Lobby while we were in town, but I knew I didn’t dare ask Guy for that!  J  I hate, that I can’t just jump in the car and take off to do what I want to do, when I want to do it!!  L

Our neighbors and little community are so generous.  We’ve gotten tomatoes from two different neighbors. One is growing these monsters – about a lb per tomato.  Wow! There is NOTHING like the taste of a tomato picked right out of the garden.  

Another neighbor has brought lots of those small oblong tomatoes, cucumbers, and peppers.  The lady across the street and one down the road a ways have brought sandhill plum jelly. Guy’s mom used to make that and keep us supplied.

I’ve been doing some sewing this week – working on those little flower blocks.  I stitched the applique down with the machine (because my fingers won’t tolerate the hand sewing L), but I sure don’t like how they look compared to the needle-turned blocks.  This quilt with have a duke’s mixture of techniques within it. You’ll just not have to look closely at it.  For the 1sttime in my life, I’m saying I’d rather have it done than have it perfect.  Ouch! That is hard to say!!! L

Saturday began my week off from my medicine, IBranc.  So many people ask me if it is working.  I never know what to tell them.  I think it is doing something because of the reduction in the number and coverage of the scabs on my scalp.  But there are some really ugly, stubborn, deep ones that have not budged. The skin discoloration continues on the right side of my forehead and down onto my eyelids.  I’ve developed  a cough that occurs occasionally, but I have a lot of post-nasal allergy drainage.  I hope that is what it is from, and not the cancer in my lungs! One never knows what is going on inside where you can’t see, but I’m still feeling good, so I can’t help but think that the med is working.  I'll include pictures at the end for those who want to see.  There probably is not that much difference from last week.  Maybe a little worse looking????

My grandson, Chris, (Mark’s), turned 15 this week, and Dylan will turn 17 next week.  My goodness these boys have grown – becoming young men.  Here they are working on Chris' varsity soccer banner in preparation for a game tomorrow.

 The last day of October, Jeannine’s oldest, Maya, will become 13 – a teenager!

Jeannine is supposed to close on her house the 24th.  Please pray that all goes well there for her and the girls.  There have been a few migraine-causing glitches along the way, so she needs this week to go well for her.

I really appreciate your specific prayers this past week.  I do believe they were more effective.  Here are my specific needs for the week to come.
1.   Pray for the sores in my nose to heal
2.   Pray for my cough to go away.
3.   Pray for my white count to rebound while I’m off my medication for the week, and that I don’t get an infection or have to take further precautions (mask)
4.   Pray for continued healing of my rib.
5.   Pray this ITCHING stops!!!  I’m sure it is the medication.
6.   Pray I don’t have to get out of bed every night with leg cramps – don’t know why those have started.

And as always…….I’m in His hands……

Sunday, September 9, 2018

Another up and down week.....

I guess I ought to get caught up on this week.  It’s been an up and down week.  We’ve stuck pretty close to home since the weather has been rainy or misty a lot of the week.  The cooler temperatures have caused me to get out some of my winter clothes that it seems I just got stored away!  I’ve been cold most of this summer, and the numerous cropped pants I usually wear throughout the summer have just hung in my closet. Most of them ended up a size too big anyway due to my weight loss.  I thought I had a bunch of 12s somewhere, but all I could find was 14s, and they just hung on me.  I know I’m not supposed to be losing weight, but I have the appetite of a bird.  It is better since this new medication does not cause a terribly dry mouth like the Mekinist did.  It took a quite a while to get that Mekinist out of my system.

You always wonder what the side effects of a new medication will be. So far, the SE of Ibranc has not been all that bad.  It does make my hands itch – or maybe I’m going to get some money!  HA!  The biggest Issue that I’m coming to realize the last couple of days is neuropathy – of my fingers. UGH! I didn’t see that as a “common” SE, but it is a SE.  I have permanent neuropathy in my feet from the 1stchemo that I took. (from the ball of my foot to the end of my toes).  It might be a little worse In my feet, but I’m used to it there.   I sure don’t want it in my hands this early in this round of treatment.  I just took by 15thpill today.  Next Saturday will begin my week off.  Monday, I’ll be getting my 1stlab work after starting this Ibranc.  The biggest SE is a drop in blood counts. The pharmacist said it usually happens in the 1st2 weeks.  We’ll find out Monday.  

Thursday was my worst day this week.  I had swallowed some water down the wrong pipe, and really choked on it, coughing and coughing.  I think I probably aspirated a bit, and that made me scared of developing pneumonia which would have been disastrous.  The worst part was coughing the rest of the day with a broken/cancerous rib.  That rib has given me fits all week.  Guy keeps reminding me how long it took to heal the 1sttime I “popped” it.  It seems like the pain is greater this time, though.  I have to take Tylenol in the daytime and Aleve at night. I have to sleep on my right side, and if I stay on my right side, I’m pretty comfortable when I wake up.   I usually have to get up a couple times during the night because of my nose being so dry. Once I get it cleaned out, I can go back to sleep pretty quickly.

But Friday, I began to feel better with very little coughing, so I figured I’d survive after all.

I do think that the Ibranc is doing some good.  When I started it, the left side of my scalp was covered with these ugly gray scabs.  This past week, those have been coming off, and there is pink skin underneath.  There are a couple really big, deep ones that have not budged, but I have to think that it is doing some good.  I’m on the highest dose, so if my counts drop or the SE get too bad, they can cut the dosage back some. I hope they don’t have to.

The two fingers that had been really raw and inflamed places next to the nail are soooo much better.  In fact, I told the pastor that I would try playing my keyboard Sunday.  I haven’t been able to play for a month.  My dear friend, Tracy, suggested that I soak them in Epson salt water.  Well, why didn’t I think of that??  It worked!!  I began to get immediate relief!   What a relief to have those areas almost healed.  They were so tender for a while, I wore metal protectors over them.

I don’t know if I’ve ever had finger nails this long.  

I guess part of it is that I’m not doing a lot to break them. I do still take the collagen – only once a day, though, not the twice a day that it recommends.  The problem is that my toe nails also grow, and it is not as easy anymore to trim them.  One thing that makes it hard is my right ankle is fused, so I can’t bend it sideways, and that knee (that has been replaced) does not bend as well as the other.  I keep thinking that I need to find a podiatrist. I wonder if insurance would cover that?? I just know I don’t want any more ingrown toenails.  The thought of some doctor working on my toes brings back shuddering memories.  When I was a child, I had very flat feet, and Mom would take me to a foot doctor fairly often.  He always put my feet into a pan of water and turned on some kind of electricity that would cause my toes to turn down.  I don’t know what in the world that was supposed to do for flat feet! The other thing is that he would always trim my nails – I just HATED that!!!  It hurt!!  He made me wear big old clunky insoles in UGLY TIE shoes.  When I got to be a teen, Mom took me to another foot doctor.  He told me to throw those insoles away, and learn to hold my feet/arches up.  We left his office and immediately went to a shoe store and bought a pair of penny loafers!! It was YEARS before I would wear another tie shoe.

I guess I ran out of time or energy last night, so I’ll try to get it finished tonight.

I was able to play the keyboard this morning.  By the time I finished, my fingers were tender – going to have to get them back in shape, but it felt good to worship through music again. Actually, I’ve felt really good most of the day – didn’t even get very sleepy this afternoon.  

Yesterday, I worked on this 4thblock of “Bloom.”  

I had it about 2/3 done, but it took me much of the day to finish it.  I could tell the neuropathy was bothering me.  I guess I’m going to have to go back to the applique method that the author of the pattern used.  There are so many smooth curves in the simple flowers, and the only way I can get them very smooth with no “poky” areas is to needle turn by hand.  But perhaps if I use the tutorial method the author put together enough, I can get better at it.  Then I’ll machine applique it.  It will be easier on my fingers for sure.  Guess I just have to give up my perfectionist tendencies.  UGH!

I’m so proud of my grandsons.   First day of school pictures.

 Dylan is a junior now, and of course, made the varsity soccer team. They have to try out every year. I guess there was a huge number this year.  But, initially, Christian made the JV team – for a day or two – and they moved him to varsity – as a freshman, just like Dylan did.  The 1stgame, Chris got some playing time, and Dylan scored the only goal of the game, winning 1-0.  One of the recent games, Chris was named player-of-the-game.   They are pretty amazing boys. Some of the classes they are in are honor classes, too.

Hoping to get to the Fair sometime this week.  Guy got the new batteries put into my scooter, so I can use that and won’t have to rent one.

I’ll once again put pictures at the end where you have to scroll a bit to protect those who have week stomachs.

I believe that we should pray specifically when we pray, so I’m going to list what you can pray specifically for.  My painful rib, my swollen eyes (which are a tiny bit better), my lungs/cough (which is slight now and then, but painful because of my rib), the sores in my nose (which makes me get up 2-3 times a night). Pray my blood counts remain at a good level.

I know I posted this on FB this week, but it was so good, I’m putting it here again.  It really spoke to me, as so many from this devotional book by Sarah Young do.

I love you all so much and appreciate your prayers sooooooo much!!!! I would not be where I am without them.

And as always……I’m in His hands……

Last week all this area was scabbed over. You can see about half has come off.

In the picture below, a lot of the darkened area is hair, but there are scabs in the hair that seem to be hanging on for dear life. Behind that area a week ago was all covered with scabs.

This shows that the discolorations have moved past the midline to the right side. Need a hair cut!!!!

My cheek has remained about the same - a little darker in some areas, and a little lighter in others.

Swollen eyes when I first get up. The eye on the affected side is doing better than the other.  But, the swollen side is the side I have to lie on all night - gravity!

Tuesday, August 28, 2018

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…….