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.....

Thursday, April 20, 2017

Good news and bad news.....

After having such a rough week a couple weeks ago, this past week was SO much better.  I had more energy – not a lot – but some was more.  The church pianist had asked me several weeks ago if I could play my keyboard along with her for Easter Sunday.  I really wanted to be able to do that.  So last Wednesday night we got together in the evening and practiced.  I thought she just wanted me to play offertory or a song with her, but she wanted me to play for the whole service!  And it was 5 hymns (ALL verses), the prelude, the postlude, and another song that had become a tradition there for several years.  It was from an Easter cantata they did one time.  That was the only song I did not know, but it was not all that hard.  The practice went well, and I told her I did not know from day to day how I would feel.  I might be able to play the whole service, part of the service, or none of the service.  I wouldn’t really know until Sunday – we’d just have to play it by ear.  Thankfully, the rest of the week, I really felt pretty good.  When Sunday came, I felt pretty strong.  I was able to play the whole service – I think a little adrenalin was probably flowing, too.  It went well – I used mostly an organ set up, and after the service, I got showered with complements!  So many loved “the beautiful organ sound!!!”   They have an organ that has just set there for years, and many of the older people long for it to be played.  I could do that, but it is much easier for me to play my keyboard with the organ voices than for me to learn their organ.  To tell the truth, that is probably the same organ I used to play on for hours when I was in grade and high school.  That was back in the days when the church remained open all the time, and would go in there and play the organ for hours.

In the afternoon, Mark came from Overland Park to visit awhile.  He needed us to keep his golden retrievers for a week while he had to fly to Birmingham and then to Chicago for business.  In the evening, Guy’s nephew and wife came for a visit, and I felt good the whole day.

Monday was a good day, too.  It was the monthly senior covered dish luncheon.  I actually baked a dessert to take – first time I’ve baked anything in a long time.

That was the good news part of the month.  HOWEVER, they say all good things must come to an end……

If you read my last post, you’ll remember that I went to KUMC the last week of March for an MRI of my head, and it showed no cancer.  This picture was taken a couple of days before the MRI.  Note the area just below my finger.  This was once a cancerous lesion, but all that remained after 4 months of chemo is just a couple little marks.

Shortly after coming home, a little itchy bump came up right above where one of the lesions had been. It was about as big around as a small pencil eraser, but didn’t stick up that much.  The lesion that had been there and was practically gone didn’t seem involved in this itchy spot, but as time wore on, the original lesion seemed to become rather red and angry looking. This was last Thursday, April 13.

Last Thursday I began to take pictures of it because it began to worry me.  I knew chemo was coming up Tuesday, so I though perhaps I could get the doctor to look at it.  Below are the pictures as they progressed by the dates.
 Thursday, the 13th - you can see better exactly where it is located.

Below was Saturday, April 15.

Below was Sunday, the 16th.

Below are the pictures Dr. Haenel took on Tuesday, the 18th in the infusion center.

(By the way, Saturday I had Guy shave my head.  My hair had grown out to about 3/4 inches long, and it stuck up like an orangutan's hair.  I told him as long as I was getting chemo, I wanted to be able to see my scalp very clearly in case something did appear.)

By Tuesday (my 3rd Tuesday of chemo this month), after being taken back to get started with the chemo, I showed the nurse this spot, and she immediately went to get the doctor, who came immediately from her office to see me in the infusion area.  She said she was “quite worried” with how it looked and said I should contact Dr. Powers at KUMC right away.  She admitted she was not that experienced in looking at this rare cancer, but she did not like the looks of it.  The doctor, her nurse, and my infusion nurse were all standing around me with serious faces, and the doctor had her hand on my shoulder, saying she was sorry.  My heart sank as low in my body as was possible.  I wanted to cry, but no tears would come.  I asked Dr. Haenel if she would take a really good picture of it for that day, and I would email it along with the others I had to Dr. Powers and see what he would have to say.  Dr. Haenel called Dr. Powers’ nurse to give her a heads up that pictures were coming.  She called me right away and gave me her email address.  She said to email them to her, and she would pass them onto Dr. Powers.  I did so, and Dr. Powers later sent me an email saying that there did seem to be a progression in the pictures that I sent.  He also asked what the other sites looked like.  I emailed him back that they were just fine.  The one was hardly visible at all.  This is on the other side of my flap.

and the one on top of my head had not changed either – it was healing fine.  

He said in the email that he might consider radiation therapy and adding another chemo agent.  Then I did not hear from him the rest of the day.  I watched all morning for an email from him.  Finally, I called his nurse about 2:00.  She said, “Well, we’ve been talking behind your back!  We think that you should come to the office here in OP, so we can actually take a look in person.”  I was actually kind of relieved.  I would feel better if they would eyeball it.  I hate to make the trip, but while I’m there, the radiologist will see me, and they will put together a plan.  We really don’t even know for sure that this is a cancer spot.  It has not acted like the others.  The others have not itched.  This one has not had the characteristic yellow-greenish circle around the purple area.  BUT, we cannot take any chances!!  So, it is off to KUMC next week to see Dr. Powers and the radiologist next Tuesday, the 25th at 11:30.  That week is my week off chemo – not how I had planned to spend it!!

How do I feel about all this?  I’m not really sure.  I’ve been concerned all along over the fact that there is something there that does not look like it did the last week of March, and it doesn’t seem to be going away.  I guess I’m hoping that it is something besides positive for cancer, but I don’t know what that would be.  If it is positive, I’m going to be very discouraged, no doubt about it!!  If I had not gone to the lower dosage, would it have appeared?  If I had not had those 2 weeks off, would it have appeared?  I cannot live the rest of my life taking chemo!!!  The plan was that if I took these 3 more months of the reduced dosage, and no new spots appeared, I could take 3 months off.  But that didn’t happen, so now all bets are off……It all hinges on what happens next Tuesday.  I think I may be in a little bit of shock, maybe a little bit in denial, but probably mostly in the here-we-go-again mode, which is an I’m-too-weary-to-worry right now.  All I can do is try to remain calm, do what I can to keep the stress down, and keep praying for healing and peace of mind. 

Needless to say, I’m in need of much prayer – again!  I’ll end with yesterday’s Jesus Calling:

“Peace is my continual gift to you. It flows abundantly from My throne of grace. Just as the Israelites could not store up manna from the future but had to gather it daily, so it is with My Peace.  The day by day collecting of manna kept My people aware of their dependence on Me.  Similarly, I give you sufficient Peace for the present, when you come to Me by prayer and petition with thanksgiving.  If I give you permanent Peace, independent of My Presence, you might fall into the trap of self-sufficiency.  May that never be!

“I have designed you to need Me moment by moment.  As your awareness of your neediness increases, so does your realization of My abundant sufficiency.  I can meet every one of your needs without draining My resources at all.  Approach My throne of grace with bold confidence, receiving My Peace with a thankful heart.”

As always…….I remain in His hands……