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…

Results of Oncology Visit and the Plan.....

It was a long morning from waking until 11:30.  We did go to breakfast at one of my favorite places there – Einstein’s Bagels.  I’m not usually a bagel person, but they have the BEST bagels and so many varieties there!  I always get the cinnamon raisin with honey butter.  I usually take home the chocolate truffle one, but they were out today.

As we were driving to the appointment, about 10 minutes from Mark’s house, I was just a bit nervous for just a minute or so, but then it left, and I felt calm.  This spot had a red line around it this morning, so it was quite angry with me – I wasn’t real happy with it myself!  😀  

This spot is to the right of my flap - right up against it.  My ear (unseen) is around on the left side.

It is to the point now that it is hard to get in a position to sleep without impinging on it.  When I got up this morning, it was kind of aching.  It is no longer flat, but is a lump now.

When Dr. Powers came into the room, he looked at it and said, “We can do one of two plans.”  The first plan is to do radiation.  We would continue the chemo, but at a much reduced dosage, in order to reduce the toxicity of the radiation.  He said they could radiate it at an angle which would protect the brain cells.  I told him that would be good, because at my age, I didn’t have any brain cells to spare.  He said that was a valid concern, but they had ways to do that to minimize that issue.  He said the radiation usually last 6-8 weeks – Mon-Fri. 

The 2^nd option was to add another chemo agent – Avastin.  He said this was a commonly used agent that targets blood vessels and vascular problems.  I asked what his gut feeling was about the two, and he thought either one would work.  He first wanted Dr. Massey to see me if she was available.  She’s the head of the radiology department.  He left the room and came back with her shortly.  She looked the whole situation over and said she thought we could get good results in 2 weeks, and she said she was not worried about the toxicity.  I was encouraged after hearing her.  She seemed really upbeat and confident about it.  He said he thought this was a good way to go.  I asked how soon they could get this going, because this thing was growing fast.  Dr. Massey said she would get on the phone immediately.

I told Dr. Powers when I first found out the diagnosis, I didn’t read extensively on it.  A part of me wanted to ask him about my real future, but a part of me didn’t really want to know if there was not a cure, because I didn’t want to lose my hope.  He said he felt we had “a lot to be positive about.”  He said he hadn’t near used all the medications that were available.  Guy asked if this was a long drawn out thing, and he said, “Yes.”  So, it’s not going to be over with just a few months of chemo.  It’s like Guy said, “We’ve got the chemo and the radiation – and prayer will have to take care of the rest.”

Dr. Powers was very happy with the way the rest of my head looked, the other places have virtually disappeared.  The top area has not disappeared, but he was pleased with how it was healing and had not gone backwards.  This current spot was not a NEW place, but a flare up of one of the original sites.  He didn’t feel like the two weeks off of chemo in March had anything to do with it, and it was not due to the reduced dosage because it showed up before that.  I told him that with this reduced dosage, I was feeling better – had more energy.  So hopefully that will continue over the next few weeks.  Dr. Massey said the side effects of radiation would be some reddened skin and fatigue – I might feel a little lazy in the evenings.  No nausea, vomiting, etc.  That’s a good thing!

I’m OK with the plan.  I kind of figured this would be the recommendation because of the email Dr. Powers had sent me.  As long as there is a plan they are comfortable with, and they feel it will work, I’m up for it.  Just anxious to get it started before this thing gets any bigger or deeper.  I’m now just waiting for them to call me.   

Again, I want to thank all of you who rallied around me with your prayers.  There is just no way to express my gratefulness.  Prayer is SO very much a part of my whole healing process.  God richly bless all of you!!!!!!

And as always……I’m in His hands…..

A beautiful Sunday.....

It is a beautiful Sunday here in the middle of Kansas in the middle of April.  It is sunny, very little wind, and 68 degrees.  I looked at the Alabama weather and saw that it will be in the 80s this week, where we will be in the 60s and 70s.  I’m trying not to think about those early warm springs we enjoyed for 27 years – with them coming in March and early April – breaking out the crop pants and sandals.  I’m still wearing long socks and long pants with jackets handy.  Although, everyone else seems to be changing to spring clothes.  We are just not quite acclimated yet.  The one thing that makes the “late” spring here worth is, though, is NO SPRING ALLERGIESS!!  (so far, at least)  It’s a fair trade off, as far as I’m concerned.  I miss all the beautiful flowering trees and bushes, but I DO NOT MISS THE MISERY IT CAUSED ME THERE!!  I have enough other stuff to deal with here.  The Lord knew I could not handle allergies along with all the rest.  Thank you, Jesus!!

This morning church and SS was a blessing.  The SS scripture was about how nothing can separate us from the love of God.  NOTHING – “Who shall separate us from the love of Christ? Shall tribulation, or distress, or persecution, or famine, or nakedness, or danger, or sword? As it is written, “For your sake we are being killed all the day long; we are regarded as sheep to be slaughtered.” No, in all these things we are more than conquerors through him who loved us. For I am sure that neither death nor life, nor angels nor rulers, nor things present nor things to come, nor powers, nor height nor depth, nor anything else in all creation, will be able to separate us from the love of God in Christ Jesus our Lord.”

Not even cancer……

One young lady shared her heart this morning in our class.  She’s been through a lot in her life, but her faith is so strong, and I admire her so much.  I love being among those who are not afraid to be vulnerable and transparent and share their heart among people who are so accepting, loving, and supporting.  I’ve also been the recipient of that acceptance, love, and support.  Could not make it without it.  God knows where to place you just when you need to be there.

I have forgotten to drink water today…..ARGH!  Actually, I slept all afternoon.

I decided last night to stop the denial.  I’m quite sure this spot on my head is cancer that has come back.  It is in the exact place of one of the 3 spots that were there when I started the chemo.  Two of them are essentially gone.  This one never really disappeared.  It always had two tiny remaining black spots.  I still do not know how I got the all-clear MRI.  I guess, as aggressive as it is, it can just come back that fast.  I’ve analyzed it six-ways-from-Sunday.  It appeared the week after 2 weeks off chemo.  It appeared before the dosage was reduced, so it didn’t have anything to do with that.  I don’t know if it is the result of the two weeks off – or if it is just coincidental. 

After the day I found out the original biopsy results, and I went to the car and Googled angiosarcoma, I have never gone back to read anything on it.  I want to ask the doctor if it is curable or am I going to have to live with this the rest of my life.  But I’m not sure I really want to know.  I’ve never been a stick-your-head-in-the-sand kind of person.  I ordinarily want to know everything there is about a subject.  But if I were told this is not curable, I’m afraid I’d lose my hope – and I simply cannot do that.  Do I believe in miracles?  Yes, I do.  Will I get one?  I don’t know…..

I don’t know how to pack for our trip to Kansas City.  I’m hoping we can go up there, find out the plan and come back home with the plan implemented in Hutch.  Just as sure as I take only clothes for an overnight stay, they will want to implement the plan there.  I guess I’ll take enough clothes for a week’s stay, just in case.  It should be fun taking Mark’s 2 dogs, Annie with her cage, and suitcases in our Honda CRV.  I’m so thankful that Mark lives there.  I don’t know what we would do if we had to stay in a motel the whole time.  God is good to take care of all the details.

With no earth-shattering news to share tonight, I’ll cut this one short.

As always…….I’m in His Hands…..