Saturday, May 6, 2017

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 1st 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 63rd 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…….

Tuesday, May 2, 2017

Some not-so-good-news tonight…..

I STARTED THIS BLOG SUNDAY NIGHT, SO I’LL GO AHEAD WITH WHAT I WAS GOING TO WRITE AT THAT TIME.  THEN I’LL JUMP INTO THE REST.

It seems I can never have just a nice quiet week off chemo.  After getting home from KUMC cancer center, I was very anxious to get this radiation started.  I looked on line for this Dr. David Bryant, the oncologist radiologist they chose for me.  This is the doctor than Dr. Haenel worked the most with.  I found out that he is based out of Via Cristi in Wichita, but he comes to Hutch Monday and Wednesday, so he is very busy those two days.  Wednesday came and went with no call.  Thursday the receptionist called to say it would be the next Wednesday.  Let’s see now – that’s 5 weeks after I discovered it!  PLEASE PRAY THAT IT HAS NOT TRAVED TO SOME OTHER PART OF MY BODY – WHERE I CAN’T SEE!!!!  No other lesions have shown up on my head at least, but it does travel easily to other parts of the body.

I got my fluids on Friday as usual.  Saturday was a pretty good day as far as strength goes.  I think this reduced dosage has given me a little more energy on my days off, and that is a very good thing. 

Saturday afternoon we had a great time when one of our high school classmates and his wife was in town and stopped by for a visit.  Bob and Marilyn Myers.  What a great visit we had.  Guy and Bob had a great time swapping military stories.  It always lifts my spirits when visitors come by!

Sunday morning, I awoke terribly weak and wobbly. It was just one of those days that happenes now and then.  I knew right away there was no going to church.  How I hated to miss!!  I always look forward every week to SS and church.  I knew I needed to get dressed because I’d feel better than slouching around in my PJs.  It took me awhile, but I did manage to get comfortable clothes on.  My feet always feel better with socks and supportive shoes on.  I knew I needed to eat breakfast.  I just poured some cereal in a bowl rather than cook the usual oatmeal.  The rest of the day was pretty much spent sleeping in my recliner.  It was just one of those BLAH days.  They said they would come along now and then. 

Monday morning, I felt a little better.  I thought I would take my time and take a shower, since I had not had one for days.  Then I could just rest.  Just as I was getting out of the shower, Guy asked me if I would like to ride over to McPherson and eat breakfast at Perkins.  Whew!  I really was not up to it, but how could I say, “No”?  So, I got dressed and RESTED on the way to McPherson.  We had eaten there last week, early in the week, and it was great.  Their pies are to die for.  But this was breakfast.  I got the Texas French toast with two eggs and two bacon.  It was probably the worst tasting bacon I’ve had in a long time.  It looked like good  bacon, but didn’t even taste like bacon.  I kept thinking how good Scrambled Sam’s (Lyons) tasted!  NOTHING like this!!  Oh, well, the rest was delicious and I just appreciated being taken out for breakfast!!

Today, Tuesday, was my chemo day – the first one back after being off a week.  I always see Dr. Haenel, the oncologist here in Hutch, on the first day of the new month.  I expressed my concern about having to wait so long getting into the radiologist.  That I was afraid it would travel before they zapped it.  She agreed with me, and said that it could.  It was kind of scary that she, too, was concerned about it traveling.  I wondered if they knew the urgency since it was so rare and so aggressive.  She said that since he was only here two days a week, he was a very busy man, and was sorry he could not see me sooner.  Hopefully they could get done what needed to be done ahead of the actual treatment as quickly as possible – maybe even Friday.  Anticipating that, she was going to cut the dosage of my chemo today to 35 mg, as planned by Dr. Powers.  Since Taxol is radiosenstive, it can cause greater toxicity in the lesion and cause the radiation to be stronger and possibly cause more burning.  There is a good bit of preparation that has to be done – measuring and mapping of the area.  They have to make a mask that will fit your head, and hold you down perfectly still during the treatment.  So, you don’t just walk in, fill out some papers, and get your treatment.

Dr. Haenel asked how my neuropathy was doing.  I said it was terrible.  That it probably caused me the most discomfort.  I asked about several things I could do, and she said, no, it wouldn’t do any good.  That was discouraging.  She said with two more month to go, the damage to the nerves was most likely going to be permanent.  I might get some feeling back – we just wouldn’t know until all the treatments were done.  She felt that PT would help me learn to walk more safely and help with balance if I was open to that.  I said, definitely open to anything that would help keep me safe.  We certainly did not want to risk any falls.  That would be the eventual outcome if we just continued as we were now.  THAT was certainly discouraging news.  The one thing I did NOT want out of this was a life of numb feet (besides the cancer itself, of course)

THEN the final blow she had to tell me was that we were looking at long range plans of fighting this cancer since it was so aggressive – I interpreted that to mean that this was probably a life-time of fighting this nasty stuff.  She said that meant at some time down the line it would most likely spread to the lungs or the liver.  “That is why we watch your liver enzymes, and that is why your KC doctors bring you in every 3 months and run all these scans and MRIs.”  I almost started to cry but didn’t.  This was the ultimate shock to me.  I’m not ever going to be “normal” again with a “normal” life.  I thought I would take all this chemo, have this radiation, take some more chemo, and this stuff would not come back.  I guess I just thought all wrong! I do remember hearing Dr. Powers kind of hinting at this, but I never asked him the real hard questions, or he never got as blunt as she chose to get.  He said he was still positive about it all and there were lots of drugs that could still be used – he had not pulled out all of his guns yet.  I told Dr. Haenel what he said, and she agreed with him.  I left her office, checked in at the receptionist office for the chemo, and waited in the waiting area for them to call me back.  I told Guy that we had not received encouraging news.  He reminded me that we let them do chemo and radiation, and God is in charge of the rest.  That is very true, but at the moment it just didn’t make me feel very happy.

I had told the receptionist to put me in the back section where my favorite nurses were, but she must have forgotten.  When I was called back it was a nurse I had not had before, and she was working the front area.  I was so disappointed.  She was nice – I had seen her around – just never had here.  So, we kind of had to get acquainted.  She was empathetic with my situation, but didn’t have a lot to say.  She was trying, but only meeting me for the first time, it was hard for her.  Shortly, Anda, my favorite nurse, who God always seems to send to me at the right time, happened to come by and ask how I was doing.  I told her I didn’t get good news from Dr. Haenel, and I started crying.  As I told her, she started to cry.  Then she came over and hugged me, and we just held each other and cried.  She told me she loved me, and everyone on her end were much in prayer for me constantly.  She held my hand, crying, and said she didn’t want to go.  I told her how much I appreciated her, as she always had the right thing to say to me to encourage me.  She told me that if I left and still struggled with down feelings to let them know because there were others I could talk to and always help for me.  I told her that I would be OK.  I had never stayed feeling down for long – not with my faith, my positiveness, the support I had.  After she left, I just cried for a while.  I think I just needed that release – it was a long time coming.  The rest of the time I just closed my eyes and rested.  When It was time to leave, I went to see Anda I hugged her and told her how much I appreciated her stopping to talk with me – God always seemed to know when I needed her.  She told me, “For a long time I couldn’t look down the aisle to where you were because I knew I would start crying again.”  Then she said to me, “One thing I want to tell you.  Live in the present.  None of those things may come to pass anyway.  Just don’t live your life dreading the future.  Live your life for the now and enjoy the good days you have, and we are always here for you.”  See, she always has such wise and encouraging things to say to me.  I left feeling a lot better.

We went to the Airport Steak House to eat and ate from the buffet.  That is always good food, and we had not eaten there for a long time.  We couldn’t go right home because Guy had had a 3:00 appointment with his diabetic educator.  That lasted an hour.  She is really good.  I think she may have motivated Guy a little more this time.  She told him that he was not that far off of his goal, and wasn’t really doing all that bad.  She’s a real cheerleader!  She said if he had too many of the high spikes, Dr. Jackson, his PCP, would probably increase his medication, but she would rather he just take more walks rather than take more medication.  He will go back to her in 3 months.;

So, tonight I leave you with yesterday’s, Jesus Calling devotional, which I certainly needed:

“You are on the path of My choosing. [UGH, added my me] There is no randomness about your life.  Here and Now comprise the coordinates of your daily life.  Most people let their moments slip through their fingers, half lived.  They avoid the present by worrying about the future or longing for a better time and place.  They forget that they are creatures who are subject to the limitations of time and space.  They forget their Creator, who walks with them only in the present.

Every moment is alive with My glorious Presence, to those whose hearts are intimately connected with Mine.  As you give yourself more and more to a life of constant communication with Me, you will find that you simply have no time for worry.  Thurs, you are freed to let My Spirit direct your steps, enabling you to walk along the path of Peace.” 

I always thank you so much for your prayers!!  I never take them for granted.  Each and every one means more than I can possibly say!!! 


And as always…..I’m in His hands…..more than ever…