Monday, December 10, 2018

Riding the roller coaster

I need to catch up, but this will be short.  My fingertips are very tender.  This causes me great concern.  How bad will this get?  Will it be permanent like it is in my feet?  My feet are just numb, so thankfully walking, with the proper shoes and inserts does not cause all that much pain.  There is no way to play my keyboard this way.  It hurts to put any pressure on my nails.  What is weird is that the pain didn’t start until about a week after the 2ndround of chemo.  The first round just caused a little numbness – even though I used ice during the infusion.  Well, there just isn’t anything I can do about it but ride it out.  It even hurts to press the keys on the TV remote. 😞

Actually, last week was pretty good to me.  I had to take those 5 shots to build my WBC.  Took the last one today (until the chemo on Friday drops my counts again).  I’ve learned to manage the flu-like SE by taking Tylenol on a schedule.  One of the SE that has shown up is terrible drying and wrinkling my face and neck.  A peeling rash is occurring, and the area is very itchy.  I’ve found that using emu oil is mostly relieving the itching.

The other – and probably biggest issue right now – is that both underarms are very swollen, red, ITCHY, and painful.  I have a powerful steroid cream that was given to me during another chemo time that broke my arms out to the point of scabbing.  Dr. Powers said to try that, and if it didn’t work, it may be a fungus issue which often happens.  I’ll give it a couple days then I’ll switch to the Lamisil if there is no improvement.

My “undercarriage” (as my daughter calls it) is better.  The doctor called in a prescription for a strong steroid cream.  That has really helped – hasn’t removed the issue, but greatly improved. Thank you, Jesus!!!

Another big issue is sleep deprivation.  Didn’t sleep at all last night, so pretty dragging today – plus running a low-grade fever (from the shots) – just enough to make me feel lousy today.  The nurse said the doctor could order a low-dose of Ativan.  I’m just so reluctant to take sleeping pills – not sure why.  I take a Benadryl when I go to bed – to help with the histamine from the stimulated bone marrow.

I did go to SS and church Sunday – wearing a mask.  I did enjoy getting back among my support group and worshiping.  The pastor’s message was just for me – all about HOPE.  I did OK, but wore me out.  

I did get a project finished in the basement with my sewing machine a couple days ago.  Just had to bust it out!

Mark and Amy came for a visit this weekend.  Mark went hunting with a couple of his high school friends.  It was so nice to spend time with them.  I don’t think people really realize how much it means just to come and visit a bit.

I am halfway through this round of chemo treatments – at least until I go back to KC.  It may continue after that.  What I can tell you is that it is working.  It’s slowly, but it is working.  I had this big purple blister at the outer corner of my left eye.  It has been drying.  The other night it bled out, and yesterday, the purple scab came off. My forehead is flaking big-time – a good thing.  There are still 5 scabs yet to come off there.

Today, after I got my shot in McPherson, we stopped at Wendy’s for lunch.  This lady (from a group of other ladies) came over to me and asked if we would like some candy from her sack (peppermints).  She asked in a very concerned voice if I was OK.  I told her yes – I just have cancer on my head.  I had one of my crocheted hats on.  She asked for my name so she could pray for me.  Wow!

I put the most recent pictures at the end.

Things I’m thankful for:
The Christmas spirit – songs, decorations
The Reason for the season
The sun shone today.
My rib has not hurt for weeks.
We didn’t get the big snow that North and South Carolina got.
My favorite nativity set Jeannine gave me several years ago.

My furbaby.

My warm home.
Haven’t contracted an infection during these low blood count times. Thank you, Jesus!!
My ladies’ Bible study group who brought us two huge plates of food from the annual Christmas lunch that I could not attend.
My husband who continues to do the cooking, cleaning, and driving where I need to go.

And as always…..I remain in His hands….

Scroll for pictures

Eye is less black.  Big blistery scab at outer corner of my eye gone. 

Cheek lighter and scaling.

Rash on my neck.

Rash on my cheeks and under eyes.  But face is more symmetrical now.

Rash under left arm.

Sunday, November 25, 2018

Well, I don’t even know how to describe this week.

 When I was younger, I used to just love roller coasters. Then I didn’t ride one for years, until Jeannine lived in Nashville, and we went to Opryland.  I rode one there and thought I was going to DIE.  I nearly passed out!!  Since then, I’ve avoided them like the plague.  However, this past week has certainly been a roller coaster ride – and felt at times I might die – or wished I could.  If my kids and grandkids had not been here, I think I might have checked on out.  What a wonderful distraction they were for me.

Mark and the boys spent Thanksgiving Day at Amy’s parents for the traditional meal.  Jeannine and her girls arrived on Wednesday and spent much of Thursday preparing for our big meal on Friday. Sofia,11, made the green bean casserole and helped with the cranberry salad.  Maya, 13, made the pumpkin pie with gluten free crust, so that Sofia could eat that. Friday, Mark put the turkey in the oven early (using a big cooking bag), dusting the inside of the bag with gluten free flour, and Jeannine got the potatoes ready to cook for mashed potatoes. Mark had put out the Rhodes frozen rolls to raise overnight, so they were ready to go into the oven for 20 minutes before putting the turkey in.  They were later put into the oven again after the turkey to reheat.  Some stuffing got made somewhere along the way. Everyone helped to get it all together so that when I got back from McPherson (shot at 12;30), we were ready to eat.  And I did absolutely nothing to help!  Well, I gave some sideline advice when needed, since this was a new experience for them all, fixing a whole traditional Thanksgiving meal.  They did a fabulous job, and everything was delicious.  Now both kids know how to carry on the traditional meal.

Tried to load a video, but think it was too big and failed to load.
Tuesday, a lady I didn’t really even know (she had attended one of my quilt talks at the Methodist church here), came to the door, just out of the blue, and brought us a beautiful braided sweet bread.  That was SO kind of her!  Everyone enjoyed that the rest of the week.

Wednesday, Guy’s cousin, Keith and Sharon brought us a batch of cinnamon rolls fresh out of the oven and a pecan pie.  Sharon had sent me an email and offered to bake whatever we needed, and I told her that we would be fine.  But they came with the goodies anyway.  Bless their hearts!  Later I got to thinking – it has always been hard for me to accept help or gifts, but I realized that if you decline those things, you actually rob someone a blessing of being a gift giver.   So I’ve learned to graciously accept it all.
The son of our church friends had baked a caramel apple pecan pie and fixed a sweet potato casserole and brought it to us on Thursday.  

God bless all these generous people!!!!

The double chemo from last Friday and its side effects have really kicked me off into the creek this week.  My BP bottomed out on Monday, and I had to get a liter of fluids. The chemo dropped my blood counts to dangerously low levels, so I had to return to the McPherson hospital every day, starting with Wednesday for these bone marrow-stimulation shots to try to build me back up.  After Wednesday, the cancer center was closed, so I’ve had to go to the ER to get them each day.  Today, Sunday, is supposed to be my last shot for this go-round. The problem is that we are in a major blizzard as I’m writing this Sunday morning.  Can’t see the houses across the street. Winds are 30, gusting to 44.  Out here on our hill, the wind is usually about 10 mph more than in the middle of town. It seems to be a pretty fast-moving storm, so hopefully by the time we need to go get my shot, we’ll at least be able to SEE.  

OK, back to my week…..I don’t know how to discuss, delicately, the biggest issue I’m deal with on a daily basis – and usually 3-4 times a day.  But I’m going to discuss it here, since many of those who read this are in the medical field, and we talk about all kinds of gross things without giving it a second thought. (And I need the specific prayer!) I never thought that a hem$%^&* could be fatal, but I’ve nearly died from it this week.  It honestly is worse than having a baby without any anesthesia!  I could have delivered a dozen children this week for all I’ve been through. Yes, I’m taking stool softeners and doing all the things you do to treat one.  But I go to hell and back numerous times each day, and the pain drains every ounce of energy that I might have mustered up after the last bout.  Sometimes, I almost faint.  The chemo and side effects are nothing compared to this. I moan, I groan, I get MAD, and I pray just to get through it.  I’ve considered stopping the chemo and having surgery if it continues. I don’t even think they would consider surgery until being off chemo for a while.  I don’t know what to do.  I just know if this is going to be my daily life, I’m not going to want to keep going. The lights of heaven are growing brighter every day. I just don’t know.  Is this God’s way of telling my time here is done and it’s hospice time?  It’s going to take Divine intervention to keep me going. The last two days, I’ve not had constant pain, so I praise the Lord for the periods of relief.  Perhaps, He is helping me just a bit. Just pray for me, and pray I can keep up the fight, because the chemo is definitely working. I’ll include pictures at the end. The places on my cheek are shrinking; the area on my forehead no longer bleeds out at inappropriate moments; my forehead is pinker, less purple, and is drying with some superficial peeling. The blistery area near the inside of my left eye is gone (although the area is still quite black), the blister at the outer left eye is shrinking; the discolored area around my right eye is pretty much gone.  Overall face is less bruised looking. So I would hate to stop the chemo.  The over-riding thing that I cannot get away from or stick my head in the sand over IS -  this cancer is not curable – so I’m just putting off the inevitable.  HOWEVER, I’ll take however much time I can get.  I keep remembering that God’s timing is not man’s timing.

It is hard to keep the stiff upper lip – it simply is NOT fair!  Why ME????  I lived a good life for God  and man – I’m sure not perfect, but I didn’t deserve this, anyway you look at it. I had a great desire to enjoy retirement and live into my 90s, just like both of my parents. I just will never understand God’s other plans for me.  I know, I know, so many have said what an inspiration I am to them.  Well, I would rather have been a healthy inspiration!  OK, enough of that!  Can’t go down that rabbit/ranting/feel-sorry-for-yourself trail.  Get back in the boat!!

I sure did enjoy having all my family home for Thanksgiving.  Sofia and Jon, Jeannine’s friend put up the tree. We celebrated Christmas with opening gifts Friday evening.  Had to do all my shopping online.  We had the two holidays together since the boys will be with their mother, and the girls will be with their dad over Christmas.  The adults may still come.  That is a long way off for me to know how I’ll be doing at that time.  I have to kind of plan from day to day. Yes, it would be my goal to be able to enjoy Christmas, and that is my goal. When the kids all left at the same time yesterday, sat down a bawled like a baby – had not had a good cry for a long time. What if that is the last time I see them was all I could think about. 

But I dried my tears and rode over to get my 4thshot.  By the time we got home, it was time to get knee-deep in the Alabama/Auburn college football game – the annual Iron Bowl. I could have skipped the frustration of the first half, but AL came out hot the 2ndhalf and put the game away to remain undefeated.  A while after the end of the game, I realized how exhausted I was.  I remember two years ago, I was in the KUMC ICU unit recovering from that major reconstructive surgery.  I was a few days postop, so I thought I could handle watching the game. WRONG!  I watched it but had to have extra pain medication to sleep that night. Adrenalin will definitely drain your whole body when the fight-or-flight event is over.  

Friday afternoon, the kids and grandkids all went out to the farm.  It was in the upper 50s with some wind, but they all had a great time.  The adults went skeet shooting.  Jeannine was so proud she hit the clay pigeon on her 2ndshot!  She helped the girls learn to drive our UTV out in the pasture, and they of course had a ball!  Here are some pictures from that. The video is of Maya.  She is so intent - chewing her gum! 😀

Jeannine with Sofia.

 The following is a picture of Jeannine with two of her rescue dogs.  (The other one was around - just out of the picture I guess.) She worked to get the big one, Willow, certified as a therapy dog as part of her master's in social work.  She takes Willow to her school counseling job as she deals with children who have issues.  She is perfect for this job as she is really gifted in that area.

Before they all left we got group pictures in front of the tree.  

Christian, 15, Mark, and Dylan 17.  Cannot believe how these boys have shot up over the last two years!! Handsome young men who shine on the varsity high school soccer team (freshman and junior)

 Maya, 14, Jeannine, and Sofia, 11

A friend of Jeannine's on the right, Jon.

Amy Keen and Mark

They all got away about 11:30.  Mark took Jon to the Wichita airport, so it didn’t delay Jeannine getting home. The day was picture-perfect – sunny, in the 60s and very little wind.  As it turned out, Jeannine ran into the starting of the snow when she reached Colorado and had to drive 2 hours with it blowing and in the dark.  Bless her heart – the girls are terrified of traveling in bad weather. They drove through tornado warnings the last time they came, in the summer.  It took a little longer, but they made it safely. It’s a good thing they all got out yesterday.  They would never have been able to go today with the snow and road closures. Mark didn’t have any trouble going east from Wichita to Kansas City, ahead of their snow.  They are supposed to get 8-12 inches today, so they are all snuggled in safely today.  Amy had a bridal shower to attend yesterday, so will come tomorrow to pick up Abby (was no room for Abby in Mark’s car) and return to KC.  By the way, who schedules showers during the holidays, anyway????

Side effects from this chemo
1)   Fatigue!
2)   A little bit of mouth tenderness, but quickly taken care of with salt/soda/water rinses
3)   Intense flavors when I eat anything, and it remains a long time after eating.  It feels like everything is coating my mouth – hard to describe, but kind of decreases the pleasure of good food.  Not a big appetite, but not as bad as some of the previous chemos.
4)   NEUROPATHY  It has hit pretty hard.  Throughout the 1stinfusion I put my feet on ice to decrease the amount that went through my feet.  I think it helped some, but I can feel that it has increased from what I already had. I should have put my fingertips on ice, too, because when my foot neuropathy developed from the very first chemo, my fingers were hardly affected at all.  Of course, this is a different drug, and I can really tell it is affecting my fingers this time. (Lord, please don’t take away my ability to play the piano!!)
5)   Itching under my arms.  I know!  How weird is that???  I spray a bit of Benadryl on a cotton ball and dab it there – it helps.  My bathroom looks like a hospital med room!

Here’s what I’m thankful for today:
1)   Times of pain relief
2)   Pleasant memories of my family being here.
3)   I’m still here in spite of the dr’s predictions (He said he loves to be proven wrong!)
4)   My eyes have stopped swelling when I sleep at night.
5)   I’ve not yet acquired an infection – thanks to powerful antibiotics, masks, and healthy family.
6)   I got a little more sleep last night.
7)  My left rib has quit hurting.
8) My left knee is doing better with very little pain
9)   So far, I’m not having the intense bone pain from these shots like I did last time.  I will be getting the heating pad out when I get done here.
10)   Football, for distraction
11)   A wonderfully patient husband
12) God’s holding me with His right hand – His presence and His peace.

And as always……I’m in His hands….

Scroll down for latest pictures of head. (Don't know why Blogger decided to switch fonts on me throughout this blog. 😔)

You can see pinker skin on my forehead, Multiple areas forming dry scabs. Not as spongy and bulging.

Side of face less bulging and less bruised looking.

Left eye still black but blister drying at the lateral part of eye, and blister gone on the inside corner of eye.

Most of the discoloration on the right side of my face has all but disappeared.

Saturday, November 17, 2018

A nail-biting week - sort of

The 1st part of this week was nerve racking.  I saw Dr. Page in McPherson on Tuesday.  He agreed my head and face were “exploding.”  He said he had turned in the orders to my insurance company 5 days ago, and he was just waiting to hear from them.  He said he would administer the Gemzar on day one and then the Gemzar and Taxotere on day 8, and then I would be off a week.  I don’t think he had read the specific notes from Dr. Powers in KUMC, because that is not the schedule Dr. Powers said would occur.  I told Dr. Page that Dr. Powers said it would be given as both drugs being given the 1stday, then I would be off a week, then repeat until I had had 4 rounds of chemo.  Then I’d see Dr. Powers again to see how things were going.  Dr. Page said there were several ways of giving the meds, but his way was the typical way.  But he would go back and check Dr. Powers notes more closely.

Wednesday, I called the office to check on the insurance approval, but must have called too late in the afternoon since no one answered. I left a message.  Thursday, I called in the morning, and told Vickie, one of the nurses that I was really desperate to get started this Friday, because next week would be Thanksgiving, and all my family would be here.  Plus they would be closed Thursday and Friday.  And I knew I would have to premedicate the day before the chemo – which was Thursday!  She said she understood, and there were several other patients who were waiting on insurance confirmation, so she was getting ready to call me insurance company right then.  Needless to say the waiting was excruciating!  I was down to one day!  She told me if I was not able to pre-medicate, they would give me some extra steroid in my IV. FINALLY, shortly after lunch she called and said I was a GO for Friday.  Whew!  What a relief.  However, she said the schedule was Dr. Pages schedule.  Then we got to trying to figure out how it could be given two weeks in a row, when they were going to be closed two days the next week.  I didn’t want to wait another 3 days to start and get off onto a Monday schedule rather than a Friday schedule.  She said she would check something and call me back. When she called back, she said, “Well, we’ve upset the fruit basket!  You’ll be getting both this Friday, be off the next week, and then both meds the next week.”  Well, that didn’t upset MY fruit basket!  That’s what I wanted in the 1stplace!  They had finally checked Dr. Powers notes and decided to follow them. SO, I quickly took my 2 dexamethasone tablets so I could get 2 more in by bedtime.

Oh, boy!  Did the hot flashes begin!  What is weird is at night, if I don’t move for a while, and then I move any part of my body, I break out into a sweat – enough that I’ve had to get up and change my clothes (in the past times) I had kind of forgotten that part.  Didn’t get much sleep that night (steroids and head itching!), but I thought I could catch up during the infusion Friday.  I had to be at the hospital by 8 to get some baseline blood drawn.  Then at 8:30, I went up the infusion center so Dawn, the main nurse, could do her teaching about the two chemo drugs while we waited for the lab work to come back. In about an hour the lab work came back. My WBC had come up considerably, so I was good to go.  A fairly new nurse was there that Dawn was training.  She had been a nurse for 20 years, but only been working there for 3 weeks, 2 days a week.  I was a little nervous to have her access my port, but with my weight loss, it sticks right up there, and you can even see the triangle of 3 little dots that you have to hit the middle of.  She did just fine.  Dawn was right beside her the whole time as she administered the various IV, including the pre-med and the chemo.  Dawn explained that when she started the Taxotere, they would run it in very slowly for this 1sttime, and be checking my VS every 15 mins.  Well, there goes my napping!  Oh, well….I really didn’t get that sleepy anyway, because I decided I would try what I had read about helping to prevent neuropathy during infusions that caused that.  Some research had shown that if you keep your feet and hands cold during the infusion, it would reduce the chemo to that area, and thus reduce the neuropathy.  I sure don’t need any more of that, so I thought I’d try it.  I fixed two ice bags, and fastened them to the bottom of my feet with ACE wraps.  Well, the nurse actually did it, because once my port was accessed, I couldn’t use that side very well.  She finally got them in place, but as time went on, I knew I could not keep them on the whole time.  As I recall, using ice packs, they are to be on for a while and then taken off, then put back on.  So eventually I removed them.  After that, I just place them on the foot part of the recliner.  Then I could set my feet on and off of them.  That was more tolerable.

I did just fine with the administration of the Taxotere.  They kept asking me every little bit if I was OK. I couldn’t really tell any difference, and my VS were fine every time.  My worse trouble was my restless leg syndrome that has been bothering me for about a month. It started right away while sitting in their recliner.  It nearly drove me nuts!!  I had made my essential oils recipe for this last week and had been using it at home at night.  It really does work.  I don’t usually use it during the day, because I can get up and walk it off if it gets bad. Plus, I don’t like getting that smell all over my pant legs and smelling like a walking advertisement for EOs. You can generally tell people who are really into using them, because you can smell them as soon as you get close to them.  J  Well, anyway, about halfway through my procedure, I stood up from my recliner and exercised that right leg a bit, but it didn’t help.  Once they finished with the Taxotere and started the Gemzar, they didn’t have to take my VS anymore, so I unplugged my IV pump and rolled it down the hall to the restroom.  That was enough walking to relieve the RLS.  Next time I think I’ll rub my legs with the EOs before I go, and not worry about the smell.  It is coconut oil with lavender, Peace and Calming (or Plant Therapy’s equivalent – easier to get and much less expensive), and cedar wood.  It doesn’t smell bad – just smells.

While I was getting my infusion, Guy had a lot of time to kill – 8-1:30.  He picked up my meds from Walgreen – two pills for nausea, and more dexamethasone.  He also picked up a turkey and a few needed things for Thanksgiving.  When I got ready to take my evening dose of dexamethasone, I noticed that the directions said to take one 4 mg tablet twice a day (the day before the treatment, the day of  the treatment and the day after).  I had always taken 2 with all my other IV treatments.  Dr. Page had written it for one.  What I had been taking was left over from the previous IV infusions, and that prescription had come from Dr. Powers.  Well, here it was after hours, and no chance to call until Monday.  So, I decided to go with my usual two.  I didn’t sleep any last night!  Thankfully the RLS didn’t kick in, so I stayed in bed and just (at least) rested all night.  Since I was awake, I decided to get up and go to coffee with Guy.  I’d always wanted to see what it was like at that hour (6 am) at the grocery store with all his buddies. And sometime women did show up. Then Guy suggested that we go to Scrambled Sam’s in Lyons.  It is absolutely the BEST place to get breakfast for mile around!  And we had not been there for a long time.  So that’s what we did.  

When we got home, I was able to get a nap for about an hour and a half. Then my alarm went off at 9 to take my next dose of dexamethasone.  UGH! Sleep over for now!  I remember now that I don’t sleep much for 3 days and 3 nights when taking these steroids.  During the day, you’re tempted to get lots of things done because you are “up.”  But I’ve learned from the last time that I have to pace myself so I don’t use up all my energy and then “crash” the 4thor 5thday.  I do have a good bit of stuff to do to get ready for the kids coming.  Doing all the bedding laundry.  Guy will help me get the beds made, since that wears me out even when I’m feeling good.

I think tonight I might take just oneof the dexamethasones. Perhaps I can get a little sleep.  I’ll tell you some of the side benefitsof this steroid.  The 1stday, the swelling went down in my eyes.  What a blessing that was!  Worth the price of the ticket!  It also helped the pain in my knee and the pain in my side/rib.  The energy you get can be a blessing or a curse – depending on how you manage that.

So far, I have not felt the flu side effects they talked about.  I did feel a little queasy about lunch time today, but I think it might be more the breakfast I ate.  I’m not used to eating that much.  I took one of my nausea pills, and that helped.  Today, I’m a bit dizzy at times – nearly fell off the piano bench while practicing for an offertory tomorrow.  JSo. I decided to eat a little potato soup, and sit and rest and talk to you.  AND watch Alabama football.  It started at 11 and we forget until 12 so we missed the 1sthalf.  That was apparently a good thing because we play ed the Citadel, and at half time it was 10-10!  How scary that would have been to watch – would have been too hard on my nerves and energy.  Thankfully, they came out looking like ALABAMA during the 2ndhalf and whooped them!

I think we have our Eagle Street house sold.  We showed it last week, and the guy came by a couple nights ago, and we signed the preliminary papers from his lending institution.  If all goes well we will close on Dec. 15th.  It’s kind of bitter/sweet for us.  We worked so hard to have it all fixed up (and spent money!).  It is such a so cute and cozy little house.  The buyers seems like a nice young couple with a baby. This will allow us to clean up a number of loans we have at the bank and give us considerable breathing room – especially after the fire this past spring.

Well, I’m hopeful that this chemo treatment is going to work, and I’m praying the side effects are minimal or tolerable.  After this next lab work, I’ll most like have to begin the Neulasta shots to stimulate neutrophils produced by the bone morrow.  This causes bone pain, and I remember from the last go round of IV therapy (that put me in the hospital), I had to take a shot of that before we discontinued that chemo, and I remember thinking, “I don’t ever want to have to take that med again!”  Well, here we are – I guess I’ll be taking them, because both of the chemo meds drop your blood counts.  She said I’ll just have to take pain meds to get through it.  Last time, I used a heating pad, and that helped some.  I just . have. to . get. though. this!    I can do this – if these meds are working.

Praises this week:

My insurance approved my meds
My schedule for them worked out just right
So far, so good with the infusion – no allergic reactions during the infusion.
No major side effects yet – still on the steroids for that.
My kids and grandkids are coming next week.

Prayer list for this week:

Pray these chemo meds WORK
Pray for the incessant ITCHING on my head lesions to go away!
Pray the side effects are minimal
Pray this bought with restless leg syndrome goes away – FAR away!
Pray I don’t gain back a bunch of weight with these steroids.  I like right where I am right now (40 lbs less from my highest after the last go round of steroids.

I hope y’all have a very Blessed Thankgiving!  We all have so much to be thankful for.  Thank you, Jesus, for all your blessings.

And as always…….I’m in His hands….