Wednesday, June 7, 2017

Catch up time.....

Friday  June 2, 2017

I’ll start this, but will probably have to continue later.  I’m at the infusion center getting my chemo.  I thought I’d bring my computer today.  The guest internet is too slow to do anything there, so I’ll just work on this.  However, she just hooked up my IV Benadryl, so it might be nighty-nighty here any minute.  I usually get a little loopy feeling before the “lights-out” hits me, I’ll probably have to go back and edit some later along the way. 

Today is a full day.  I got labs drawn at 8:30, saw Dr. Haenel (oncologist) at 9:15, started IV chemo routine at 9:45.  When I finish here, I’ll go to PT at 1:30, then radiation at 2:00.  Not sure if I’ll have time to eat before PT or radiation.  Guy often brings up some lunch and eats with me if it gets too late or the treatments are too close together.  I have a friend who lives in Hutch and was a cancer patient, taking infusion for a year here.  She is going to come see me about 11:00.  I hope I’m not too groggy or sleepy to visit with her.  UPDATE:  She did come, and we had a great time catching up after many years.  It really helped to pass the time.  I look forward to her coming back again.

I asked Dr. Haenel this morning if the chemo and radiation would destroy all this cancer or if it was going to be a lifelong issue.  She said with the aggressiveness of this cancer, and because this tumor popped up while still taking chemo, it would most likely be something I will deal with the rest of my life.  Bummer!!!  I kind of expected this, so I wasn’t blown away with her news.  This means some kind of cancer treatment – chemo – off and on.   Much will depend upon the scans that the KC oncologist takes on a regular basis every 3 months.  I also asked if it would always show up on my head.  She said not necessarily – it tends to go to the lungs and/or liver if it travels.  Dr. Powers (KC) said he had other chemo meds to use once this one I’m getting now is no longer affective.  Dr. Haenel explained it this way:  The cancer cells are a group of brothers or sisters.  They are all alike, and as they begin to be destroyed, a few of them decide they are going to break off from the family and mutate into something that the chemo is no longer affective against.  Then you have to use a different drug against the mutations.  SO, the bottom line is that, barring a miracle from God, it looks like there is no CURE – here on earth, at least.  However, I’m praying and believing for that miracle, if it is His will.  So, that is what I’m asking you to pray for me.  I . NEED . A . MIRACLE!!!  The thought of being tied to some treatment center for the rest of my life is rather depressing, so I can’t concentrate on that.  As Anda, RN, told me a few weeks ago – Live for the present.  Those things that you worry about in the future may never come to pass; you’re not out there yet – don’t borrow tomorrow’s troubles.  Enjoy every good day you have right now.  That advice has stuck we with me, and I truly try to do that.  I still do not know the actual long-term prognosis for this – and I don’t want to know.  I’ll just take each day as I can get it, and for right now, it is going pretty well.  I feel blessed to feel as good as I do.  I pretty much have a routine that I fall into now with only occasional disruptions or really down days.

I just heard a lady here getting treatment say, “I’ve been coming here for 14 years – every 3 weeks!”  She’s very friendly and been talking with everyone here. She originally had stage four breast cancer.  When she walked by me she said, “My hair used to be like that!” (fallen out).  Her hair had obviously grown back in and was lovely.  She commented on the bright orange shoes I was wearing – “Wow!  Those are HOT!!”  I guess this is her home away from home.  She obviously had made the best out of her situation.

PT after chemo kind of wore me out today.  I don’t know if she worked me harder, or if I was just tired, but when I got done, I was pretty winded.  All I had left was radiation, and that went well.  I’m figuring out how to get my face into that hole a little more comfortably.  It lasts around 15 minutes now, and that is quite tolerable.

Last night my hair on the affected side started coming out.  
They had said it would.  It doesn’t bother me anymore, because I plan to keep it shaved as long as I’m into all this so that I can examine my head for new spots more easily.  They don’t want me to shave the other side yet, because it might change the space under the hood, and they don’t want to run the risk of any movement under there, so I may look a little strange with half a head of hair right now.

You can see the difference from Monday to Friday after 5 days of radiation.  
It is dryer and crusty around the edges.  It has very little feeling to it now.  I’m half way through the radiation treatments now getting #10 today.  The doctor said it would most like just shrink and be absorbed back into the scalp.  It seems to me, size-wise, that it has a long way to go. 

As for the top area, these scabby “barbs” used to stand straight up, and they now are laying over on their sides – or have shrunken somewhat.
Tuesday, June 6, 2017

Well, here I am back at the infusion center getting my IV fluids.  I didn’t get far with this last week.  It was actually a pretty good week.  Just get a little weak now on Tues and Wed as I come off the steroids.

I finally got motivated to start working on my quilt room this week.  I think that is a pretty good sign for me since I haven’t had much desire until now.  Well, I’ve had the desire….just not the motivation to actually get up and do it.  It is a pretty daunting task, I will say.  
In Alabama, I had the whole bonus room over a two-car garage – and an alcove (closet without doors) stuffed full of fabric, books, magazines, sewing machines, tables, and cabinets.  When we left, I sold or gave away over half of what I had – very painful, I might add!!  Anyway, with all these bookcases and little cabinets I kept, I think I’ll get it all put away.  I just hope there will be room for ME in the room when it is all set up. 

As I began to work in the room, I discovered that all I could put away at one time was one big box.  Then I had to sit down and rest.  Yikes!  By the time I get through all those boxes I may be too old to do anything with it!!  I couldn’t believe that after ONE box, I broke out in a sweat!!  ARGH!  I have hot flashes related to the steroids now and then, but these “cold sweats” happen when I’ve overdone.  That’s always my cue to go sit down and rest.  I try not to let it get that far, but sometimes I get on a roll and don’t want to stop.  Very frustrating to have that energy level.  I’ve been trying to walk more, hoping to build up a little more endurance.  I don’t have another 40 years to get done what I want to do!

Yesterday, I finished my 11th radiation treatment – over half way, at least for now.  They said I would have “at least 20 treatments.”  This thing is really drying.  It doesn’t seem to be getting any smaller.  What I think is going to happen is that it is just going to dry up and fall off.  That is what happened to the one on the other side of the flap.  It just turned black and hard, and the little shell-like thing just fell off.  It was only about a 10th the size of this one, but this one is getting really dry and crusty feeling. 

The other issue I’m starting to deal with now is the redness/sunburn effect of the radiation.  
It is starting to get a little uncomfortable, and I’m just over half way through.  They gave me a list of lotions/creams to use, but no real recommendation.  Some are very expensive, and some are cheaper.  A couple of them can be ordered from Amazon and have good reviews, so I may try them 1st. 

The last two Sundays I’ve played my keyboard. I really enjoy that.   Last Sunday, when I got there for Sunday school, Pastor Ted said, “You are on your own this morning.  I gave Melisa a break this Sunday.”  OH!  OK…..thankfully I had prepared a prelude, postlude, and offertory – just in case I needed them.  I’m starting to feel much more comfortable playing now.  It had been a long time since I had played in church, and the 1st Sunday, I was pretty shaky.  Now, I can kind of relax and enjoy it again.  I really enjoy playing along with someone.  I’m much more of an accompanist than a soloist. 

Down the road from us, just before you leave the neighborhood, there are several mulberry trees.  The granddaughters discovered them while they were here.  I love mulberries!!  When we lived out east of Hutch (before moving to AL), we had a mulberry tree across the street from us in the edge of a large field.  I loved picking the berries and making pies.  The other day, I rode my scooter down there with a pan in the basket and picked maybe a cup full. Probably half of them fell out of my hands onto the ground as I picked.  ARGH!  I need to go back and take a piece of plastic to lay down on the ground.  Then I can pick up whatever falls there.  I put what I had in the freezer.

I need to get to the store and get some more rhubarb to cut up and freeze.  Guy has an Alabama friend that has already purchased his deer tag for this fall to hunt in Kansas, and I must make a strawberry rhubarb pie while he is here.  I made one while he was here last year during turkey season, and I think I set a precedent. 😀  

The weather here this last week has just been SO nice.  Sitting out on our deck in the mornings and evenings is just pure joy.  The boards we had put up block just enough of the wind, leaving a little breeze to make it comfortable.  We love sitting there, just enjoying the view and watching Annie play in the yard.  
In Alabama, I guess it was the humidity that drove us inside after a while.  I suppose as summer progresses, we’ll get some humidity here, but for right now, we can just sit out there to our heart’s content, listening to the birds.

Guy’s UTV’s brakes went out a few weeks ago, and he had been working on it.  He can take anything apart, fix it, and put it back together.  But this booger has stumped him.  I was in the garage yesterday, helping him to bleed the brakes by pumping the brake up and down and up and down.  No luck!  Now he thinks it is the master cylinder.  He could order one for $29, but it comes from China and would not be here until AUGUST!  Well, forget that!!  I guess he’s going to just go get one from the place he bought it - $111.00!!

I’m so excited for this weekend!!!!  My sister, Colleen, is coming for a week’s visit.  I have not seen her since we left Alabama, nearly a year ago.  She will come with me to treatments to see all that makes up my life now.  She will be bringing one of her dogs – Smoke.  I’m not sure Annie remembers him, but I’m sure they will get acquainted quickly.  Mark brings his two golden retrievers often enough that all we have to say is, “Heidi Abby,” and Annie runs to the garage door.  We had them last weekend, and when Mark came and got them, she moped around for the whole evening.  I think she was lonely.  She used to growl at them every time they all went through the door to go outside – just to let them know who was still boss, but she seldom does that any more.

Wednesday, June 7, 2017  HAPPY 49TH ANNIVERSARY TO US!!!! 

Well, I can’t seem to get this thing published.  Now here I am nearly a week later.  I’m feeling kind of down tonight, so probably shouldn’t be writing on these nights.  Oh, well, it is what it is.  Wednesdays are right before I start taking my steroids in preparation for Friday’s chemo.  So tomorrow I’ll be heading up again.

I woke up about 4-something this morning to go to the bathroom, and as I often do, I ran my hand over this alien on my head, and it was WET!  What in the world???  I turned on the bedside light, and this thing had drained all over my pillowcase!!  
As I was in the bathroom, I discovered my third chigger bite – which are getting bigger.  Then I got to thinking…….are these cancer spots that are popping out on me?!?!??!  You know how thoughts can get plumb crazy in the night…..I decided they had to be chigger bites, so I went back to bed making sure I was not lying on the scab.  When I woke up at 7:30, it had drained on the other side of my pillow again   There was a dry red strip running from it.  It has continued to drain all day – not a lot, but there is serous drainage each time I blot it.  The radiation tech said that was normal, so I won’t worry about it.  I guess that is part of the falling off process. I’m glad I have several pillow cases so I don’t have to wash the one every night.

So far, my pink head is not too uncomfortable.  I ordered a cotton wig liner that I can use when I wear my wigs.  I’ve also ordered emu oil (which they recommended) to put on the reddened part.  It will be here Friday.  I think I can tolerate it until then.

When my friend came to visit me last Friday during my infusion, she loaned me this book.  

I’ve just started it (can’t read for long periods of time), but it is great!!!  I can see why she really got a lot of good out of it when she was taking her chemo.   I’ve ordered my own copy.  I can hardly read a book without marking in it, so I wanted a copy of my own.

From Jesus Calling tonight:

“I am all around you, like a cocoon of Light. My Presence with you is a promise, independent of your awareness of Me. Many things can block this awareness, but the major culprit is worry.  My children tend to accept worry as an inescapable fact of life.  However, worry is a form of unbelief; it is anathema to Me.

Who is in charge of your life?  If it is you, then you have good reason to worry.  But if it is I, then worry is both unnecessary and counterproductive.  When you start to feel anxious about something relinquish the situation to Me.  Back off a bit, redirecting your focus to Me.  I will either take care of the problem Myself or show you how to handle it.  In this world you will have problems, but you need not lose sight of Me.”

As always.....I remains in His hands....

Monday, May 29, 2017

Trying to catch up.....

Oh, dear, I’m so far behind again.   Between chemo, physical therapy, radiation and extra IV fluids – and the fatigue …….well it’s hard to stay caught up.

I left off with getting prepared for radiation treatments.  I kind of had some of that description in the last blog wrong.  As I’ve gotten into it, I’ve learned some of what is actually happening now.  After all the prep work, that mold of my head had to been sent out of state – Texas, I think.   It took what seemed like a long time to get it back, but it actually came back a day earlier than they thought.  This black thing (called a bolus) that goes over the affected side of my head is heavy and about ¼” thick.  
It is actually made out of something that acts kind of like your skin (somehow), and it acts to bring the radiation up away from your skull so it doesn’t go into my brain.

The first treatment got started Wednesday, May 17.  They said I’d have to have at least 20 treatments, going every day, Monday through Friday.   The 1st one was VERY uncomfortable!!  It lasted about 30 minutes.  They had to take x-rays, and the doctor had to read them and OK the position of my head.  Then they had to do a CT scan to be sure all the points lined up.  THEN the radiation, which only lasted about 5 minutes.  But by the time my face came out of that sponge, the pain was pretty excruciating.  I tried to pass the time praying for my life-long friend who just found out she had cancer, and reciting the 23rd Psalm over and over.  I thought, if this is the way it is going to be each time, I’m not sure I can take this.  But the next time it was only 14 minutes, so it was not as painful.  Here is a picture of the face piece.  My eyes, nose, and mouth fit into this opening.

The edges of that face piece really leave deep lines imprinted in my face for some time after the treatment.  I lie on my stomach, and this black bolus fits over the left side of my head.  Then this white plastic hood that’s been molded to fit exactly over my head then goes over my head and the bolts snap into the table securing my head very tightly to the table so there can be NO movement.  It feels like an elephant sitting on my head until they finish and release those bolts.

I’ve had 7 radiation treatments so far.  They last from 10-15 mins, and I’ve figured out how to get my face situated a little better in that opening, so it is not so uncomfortable.  So far I’ve not really seen any side effects from it.  The left side of my head may be a little pinker than it was, but it is not painful at this point.  I’m most concerned about this flap and how it will react to the radiation.  The doctor said he had seen flaps fail due to the radiation, but HE had not had any fail.  My Hutch oncologist said that she thought it would be OK since it was not a new flap.  It is well healed, and I have had it for several months, so she thought it would be OK.  I certainly hope so!!!!  The last thing I need is for something to happen to this flap!!

I can tell the radiation is working.  The lesion still is large, but it feels dryer and has less feeling in it.

It used to be very tender, but is not any more.  The doctor said it would just dry up and be absorbed back into my head.  I think the radiation is also affecting the area on top of my head, too. That has had a rough-feeling scab on it for months – kind of like sharp, pointy bone-spur-feeling edges that stick straight up in the air.  It now feels like those pointy areas are kind of laid over to the left.  
There is no sign of the one lesion on the left side of my flap.  Just this ugly monster on the right edge of my flap!!  And we have all our guns loaded for it!!

My chemo is now every week as long as the radiation treatments last.  Although the dosage is reduced, it does make the radiation more affective.  I’ve flip-flopped the chemo day and the fluids day.  I was taking chemo on Tuesday which made me feel good Monday – Thursday due to the steroids.  But Friday through Sunday I generally felt weak and tired.  I don’t know why I didn’t think of it sooner, but last week I asked to take my chemo on Fridays and my IV fluids on Tuesdays.  That way, I’d at least feel good though the weekends.  I was really dragging myself to church and not really able to enjoy it, because I felt so week.  If I felt good, I could get back to playing my keyboard.  I did this yesterday, and I really enjoyed getting back to enjoying my music!  I got so many complements on my playing.  I just played along with the pianist using some organ and different settings on the keyboard.  So many said it really added so much to the service.  Many of the people in this church really miss the organ being played.  And I really miss playing the keyboard.  Hopefully with this schedule, I can be more involved on Sunday.

This going to Hutch every day is not particularly fun – especially for Guy.  He’s quite a trooper, and I certainly could never do any of this without him.  I know w get tired of driving.  It takes us about 45 minutes each way.  And the waiting for him gets really old.  The oncologist thought I should go to PT to help with balance and strengthening exercises.  With my feet being so numb now, walking has become a challenge.  The PT does not help with the numbness – nothing can help that, but they want to prevent any falling.  And I do, too!!  So far, I have not used any assistive devices.  I’m just very careful walking around the house – holding onto things.  Sometimes I take Annie walking, and I use a cane, just so she doesn’t pull me off balance.  On the days I have chemo (3 hours), PT (30 minutes), and radiation, Guy ends up doing a LOT of WAITING in the car.

At least our trips to and from now are a little better since we started listening to audio books.  We used to do that traveling between Alabama and Kansas.  We started listening to The Help. 

This is the 2nd time Guy has heard it and my 5th!  It’s been a while, so we are enjoying it again.  But we are going to finish the book before we finish the radiation.  So, we are looking for a new book – or preferably a series.  We’ve listened to all the Miss Julia series (16 of those).  Those were such fun books – about an older, southern lady and all her escapades.  I’m thinking we might start on the first Karen Kingsbury books.  I read them many years ago, but would like get into them again.

We’ve had a fun weekend this Memorial Day.  Mark came with the boys from OP, and Jeannine came with the girls from CO.   It’s been a while since we’ve been able to all be together for any length of time.  We all went out to eat at the Airport Steak House after church Sunday. 

The battery-powered 3-wheel scooters we got at The KS State Fair last September were a huge hit with all the kids.  It kept them busy from morning until night.  Maya said she could hardly get to sleep last night – she felt like she was still vibrating from riding.

I made my first pie in a long time! I found some rhubarb at Hutch and made a strawberry rhubarb pie.  

The girls had tasted one before, but the boys had not.  Dylan is not a fan of fruit pies, but he loved this one.  It was a big hit.  I made a separate little pie for Sofia since she is severely allergic to wheat.  I made hers with almond flour, and it really tasted good.  It was actually a little tastier than the regular pie. 😀

I had a great time Saturday at the Garden of Eden.  It’s the grocery store that Dad owned for many years, and where I grew up working weekends and summers.  So much of the store had had old equipment in it for years – the produce counter/cooler was the same one my dad had 50 years ago.  The city got a grant to buy the store and refurbish it with all new, beautiful produce and dairy coolers and freezers.  
The owners now rent it from the city.  It really spruced the whole store up.  They had a grand reopening Saturday, and it was a huge success!!  There was a great write-up in the Hutch and Salina paper, and people from all over came.  They urged former employees to come.  Deborah took Guy and I all through the store and back rooms.  I had been through it all a couple of times when Carl and I had been here.  I was able to tell her some of the history of the different parts of the store that had changed somewhat – such as one of the storage rooms had been where the old motors that ran the electrical part had been, and one of the storage rooms has been a cooler where we kept extra produce.  Several things in the store – like a couple of old scales were still there.  I remember so well weighing produce on the smaller scale.  I weighed and sacked many pounds of potatoes on this old scale.

There was an old egg crate that said “Dimond Grocery” on the side of it.  
I always look for that when I go in there.  The wooden signs handing over the aisles with numbers on them were carved out of wood and painted by my brother nearly 50 years ago.  

We saw a lot of people that we had not seen for many years.  It was a great time reminiscing!

Mark went back to OP this afternoon since Dylan had soccer practice.  Jeannine will go home in the morning.  Hopefully, her trip home will be much better than her trip here.  She came Friday night, and what should have taken about 8 hours took 12.  She had to pull over 3 times due to being in a tornado warning zone.  The rain was torrential, and the lightning was constant.  That storm followed her on I-70 all the way here.  She didn’t get in until 6:30 Saturday morning.

In general, I would say that I’m overall feeling better from day to day.  I’m sure it is due to the lower dosage of chemo while taking this radiation.  I haven’t had a “crashed day” for some time for which I’m very thankful.

Please remember to pray for my friend with cancer.  We started in the first grade together and graduated from high school together.  She recently was diagnosed with a very rare form of thyroid cancer that is very aggressive.  She has had surgery and is taking chemo and radiation.  It is uncanny how two people from the same area end up with rare, aggressive cancers months apart.  But God is able and we are both believing Him for healing along the way.

As always……..I remain in His hands……