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 1^st 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 23^rd 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 2^nd time Guy has heard it and my 5^th!  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……

The rest of the week......

Well, for a week that started out rather discouraging (in the toilet, really!) has turned out – so far – to be a fairly good week in many respects.  The pity party ended rather quickly, and I got on with my life.  There’s always more to be thankful for if you just look for it.

Wednesday I met my radiation doctor, and it went very well, but it was long.  The 1^st man (older) came in and took a bunch of history to put in the computer – questions you’ve answered a million times – but that’s OK. He was really very nice.  He explained a lot of what was to happen and even had pictures of much of the equipment that would be used.  The radiation machine looked a lot like the MRI or CT scan machines.  I’m “best friends” with those things now! 😀

Then the doctor came in to talk about the plan – a relatively young man.  He put me at ease right away as he began to explain the plan.  He felt the whole half of my head – left side where all the issues have been, including the top of my head and 5 cm away from each of the areas, which would make it take up all the left side of my head – would be radiated.  He said just treating this one spot would not be wise.  I do remember Dr. Powers talking some about that – that these other areas probably would need to be radiated also.  Anyway, he told me how it would all be done, and I felt very confident in his explanation of why and how it would be done. The prep work was able to be done and it was a LOT!!! I had to lie on my stomach on this narrow table with my eyes, nose, and mouth resting in this padded cut out “T” shaped area.  I had to lie there long enough I thought probably the indentation in my face might be permanent.  I think there were at least 4-5 men in there all working together to figure out how this bolus (mask) would be made to expose the necessary area.  They placed a whole bunch of tape all over my head, and then put this heavy, wet, HOT thing over my head – I think it was a lead mold-making thingy.  It cooled pretty quickly, and they soon peeled it off.  And a lot has to be done now on their part to get the bolus (mask) that fits my head and the wire cap that goes over everything.  That has screws in the edge of it that ties my head down securely to the table so that there is no possibility of moving.

So, the radiation is not likely to start next week.  That is the big disappointment.  I stressed the URGENCY again and again to everyone that was involved. I think they got the message and said they would do all they could on their part.  But I know, since this thing is not made there locally, a lot is out of their control.  Sometimes I think we just should have stayed with Mark in Overland Park and let them do the radiation there.  But it does seem that this doctor is being really thorough in his treatment plan.  KC might not have been able to start any sooner.

This doctor indicated that the treatment length might be more than a total of two weeks, which was what KC indicated that it would take, but I may not have to go more than 3-4 times a week.  Side effects with be like a sunburn on my head, (but most of that is numb anyway), and more fatigue.  Boy, more fatigue is what I need!  NOT!! The treatment itself will only be about 3-5 minutes long, and I won’t feel a thing then or afterwards. 

My biggest concern during this time is that it not spread to other parts of my body while I’m waiting for these treatments to start.  Also, I don’t know how deep it’s going.  It’s getting pretty gross looking. 

Today I put a bandaid over it and wore a baseball cap to the sale.  The cap irritated it a bit, but the bandaid seemed to calm the itching a bit after I removed the cap for the rest of the day.

The chemo dosage was lowered last Tuesday even more in anticipation of the radiation treatments.  (The higher dosage would cause the radiation to be too strong/toxic.) That is probably why I have felt pretty good as far as energy is concerned.  However, I woke up this morning (Sat) feeling like I needed a couple more hours of sleep.  We had planned to go to Lyons to Scrambled Sam’s for breakfast – always a treat for me, so I drug myself into bathroom, got dressed and got to the car.  I did feel better after eating.  This was the day of the 63^rd annual church auction that the Congregational church had planned.  I love going to the sale, but by the time we got back home, I just had to take a nap.  Guy even took a little one, and then he went to the sale.  I told him I’d meet him there for lunch.  The ladies always fix such good food and PIES!!!!  Last year I was in charge of making the baked beans, but this year, I had to bow out of it all.  So I slept the whole morning in my recliner.  By noon, I felt like I could make it the rest of the day.  By the time we finished eating and visiting with friends, I was ready for another nap.  So we went home, and I never did get to watch any of the sale.  I’m telling you this “fatigue thing” is really real!!!  What a bummer!!  I’m praying I’m up for SS and church in the morning since I was wiped out last Sunday.

Friday Mark brought his dogs by, dropped them at the house and drove to Hutch to meet us for lunch after I got my weekly fluids.  We ate at Taco Hut, and he left to spend the weekend with one of his friends who was involved in a big fishing tournament.  It was a friend he went to high school with.  So we have Heidi and Abby for the weekend – such sweet dogs!  They are all sleek with their summer cuts.

All waiting for their treats. 

 Mark will pick them up tomorrow after church and head back to OP.

I’ll leave you with a portion from yesterday’s Jesus Calling.

“Relax in the knowledge that the One who controls your life is totally trustworthy.  Come to Me with confident expectation.  There is nothing you need that I cannot provide.”  Thank you, Jesus!!

As always…..I remain in His hands…….