Tuesday, April 25, 2017

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 2nd 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…..

Sunday, April 23, 2017

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…..

Saturday, April 22, 2017

Ending the week pretty good.....

Overall, this had really been a pretty good week in spite of all that has happened.  At this point in the game, it is always a good week when I feel good.  Any time I can be up and about for over an hour and not break out in a cold sweat, it is a very good thing.  It’s been a while since I’ve felt like going out for breakfast at our favorite place – Scrambled Sam’s.  

It’s not much to look at, but it is the absolute best breakfast you’ll find anywhere!!!  It’s a mom-and-pop-owner that are just the nicest people with great service.  I challenge you to find better food anywhere!  It’s always such a treat for me to get eat there.  I get the one egg, two bacon (none better – cob smoked), toast and “sweet cream pancake.”  

I’m not ordinarily a pancake person, but this is indescribable.  It is kind of crunchy on both sides and just melts in your mouth.  It must be terribly unhealthy because it tastes sooooo good!!

Wednesday and Thursday I felt strong, but woke up Friday morning shaky, weaker feeling.  It was fluids day.  Last Tuesday they decided to give me an extra 500 ml along with the chemo to see if that would hold me better through the week, and I think it really helped.  After my 1000 ml Friday morning, it helped, but I rested most of the day – AFTER I went to WalMart.  I used one of the riding carts to do a little shopping.  I just hate using those carts.  First of all, they go so slowly, and the store is so large.  I feel like I need to hurry because Guy has already been waiting 2 hours for me. But I get to shop so seldomly, I enjoy it when I can.  However, with that cart, I feel so conspicuous riding it.  I wonder if people look at me and think, “Yeah, I bet she needs one of those!”  I feel like I’m always in the way on one of them.  And I hate that “BEEP, BEEP, BEEP” they make when you have to back up.  I just want to be able to walk right in there and walk normally down the aisles just like everyone else!!  sigh! 

Today, Saturday, I had a little more energy.  However, I was very sleepy and took a morning and afternoon nap.  That is just the way some days go.

Tomorrow, the pastor has asked me to play my keyboard while communion is served.  I always look forward to Sundays.  I love our SS class and everyone in it.  I love the church service, too.  It gives me a sense of peace and calming right now.

The place on my head has not gone away.  Guy thinks it is drying somewhat, but it does feel a bit “thicker” – a little more lumpy.  I’ve not really been worrying about it this week.  For days, I looked at it in the mirror 5-6 times a day.  One day, I didn’t look at it until bedtime.  I certainly have not forgotten about it, but I’m not stressing out over it. Whatever will be will be.  I just want the oncologist to look at it and tell what the plan is, and let’s get on with it.

From Jesus Calling:

TRUST ME, and don’t be afraid.  Many things feel out of control. Your routines are not running smoothly.  You tend to feel more secure when your life is predictable.  Let me lead you to the rock that is higher than you and your circumstances.  Take refuge in the shelter of my wings, where you are absolutely secure.

When you are shaken out of your comfortable routine, grip My hand tightly and look for growth opportunities.  Instead of bemoaning the loss of your comfort, accept the challenge of something new.  I lead you on from glory to glory, making you fit for My kingdom.  Say yes to the ways I work in your life.  Trust me and don’t be afraid. 

As always.......I'm in His hands.....