Tuesday, May 2, 2017

Some not-so-good-news tonight…..


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…


  1. There are no words other than we love you and are praying for y'all as I hope people will do for me. We never know our future therefore we try to live life to the fullest everyday with few regrets. Stay positive as you can so evil can't win that doesn't mean you shouldn't be angry sometimes!! I'm praying for you like so many others are and I'm keeping up with your journey!!

    1. Thank you, Joanna, for your kind words and most of all for your prayers!!