I guess I better try to catch up.

Since the last post when I got fluids, I’ve actually had really good days.  In fact, some days I feel almost normal!  If my forehead only looked as good as I feel….. *sigh*  I’m starting to get really concerned about my head.  Over the last two weeks, my head has become much worse. Pictures from the last post showed my forehead was red/purple.  It is still reddish purple, but had lots of lumps and bumps with quite a protrusion just the left of midline.  And the two lesions farther up on top of my head have not healed any that I can tell. For about a week now, if I lean down to pick up something off the floor or to pet Annie, when I stand up, my forehead burns like fire for about 60 seconds.  My other area of great concern is around my eyes.  There are several purple bumps plus just generalized darkened areas.  I’ll include pictures at the end so you can see better than I can describe.  Some days my eye lids are swollen, and some days they aren’t.  Not sure what causes the difference.  My vison, particularly my distance vision, has not been good for a long time – most of these medications do affect eyesight.  That all started mostly just after I got my new (and very expensive) glasses.  For one thing, the bridge of my nose seems to be larger, and my glasses cannot fit up close enough to my eyes.  I had them adjusted once, but they didn’t seem to think they could be adjuster further. My vision just varies throughout the day and from day to day.  It generally gets worse as the day progresses.  Thankfully, I can still see well enough to do my sewing, particularly applique. I just have to have good lighting.

My cheek is not progressing quite as quickly as my forehead, but I can feel that the area has thickened considerably.

My head is starting to become somewhat uncomfortable from time to time. Some days it may not hurt at all, and then some days I might have to take a Tylenol during the day and an Aleve at night.  The other day, I forgot and was bent over looking for a book on the lower shelf of this little stand.  When I stood up, it burned terribly, and just after I sat down, I felt something wet pour down my face.  I grabbed a tissue, and blood poured from the larger of the two lesions.  After it stopped, it was flatter – I guess the pressure was relieved.  It has not bled since.

The side effects that I spoke of in the last blog post have pretty much gone away except the itching, and it is not as bad as it was.  I’m still weaning of that Cymbalta – down to 6 beads in each capsule.  One of the side effects of coming off that med is itching, so that may be contributing to the itching.  This IBrance does cause neuropathy.  I’ve had neuropathy of my feet since the very 1^st IV chemo, making my feet numb from the ball of my foot through my toes.  I can tell that the IBrance is making my feet a little worse.  Guy has neuropathy from his diabetes, but, in addition to his numbness, he has burning and tingling – especially at night.  I, thankfully, have just had the numbness. The man who owns the grocery store recommended tart cherry concentrate.  Guy takes two tablespoons in juice each evening.  He’s been doing this for a week, and he says that has stopped the burning and tingling.  I’m going to try it to see if it makes any difference in my numbness.  

I have been sending in pictures weekly to Dr. Powers.  He has me scheduled for my next CT scan Nov. 7. That should tell me a lot – whether this IBrance has been helping my lungs.  I don’t have any “lung symptoms” that I’m aware of, and my side/rib does not bother me.  I’m really afraid that it has stopped working on my head, so I don’t know what the future holds there.  I have an appointment with Dr. Page, in McPherson prior to seeing Dr. Powers.  I’m going to ask Dr. Page what he thinks the next step should be.  I’m wondering if he or his group would suggest anything different from Dr. Powers, because I’m afraid that Dr. Powers has no more tricks in his bag.  He told me if this particular medication did not work that I would have “weeks to months” left.  I just have a hard time believing that would be going to go down hill so fast since I’ve been feeling so good for the last month.  I continue to walk my 4 blocks without difficulty, I don’t get as tired as I used to, and I’m doing a lot of sewing now.   

One of the things I’ve been working on is a jelly roll rug.  

A jelly roll is a 2 ½ inch x 42” strip and each strip comes from a line of fabrics.  You get a sample of the whole line.  It usually includes 40-42 strips.  I have several jelly rolls that I need to do something with, and this was a fun project I finished today. (Did you get that???  I *finished* something!!!)

I’ve also been working on these hand applique squares of flowers. I have them all appliqued except 6 of them.  Those are coming along pretty quickly, so I hope that is one that I’ll be able to get completed.  Here’s a picture of the pattern.

Oct. 9^th, I was the speaker at the Lyons United Methodist Women’s morning meeting, and I told my story, and then showed my quilts.  It was during our heavy rain days, but two ladies came to my house and loaded and unloaded the quilts for me.  I had a great time, and the ladies were very responsive.  I got lots of great feedback from the meeting. These two ladies helped me show the quilts, folded them up and loaded them back into the car (still in the rain!), and drove me home.  I felt great the rest of the day.  It didn’t really tire me out.  Then this past Wednesday, I repeated the program at the local Methodist church here in town in the evening. The pictures below are from the latter meeting. 

This was for Mom and Dad's 65th wedding anniversary. (They were married 73 years.) 

This was Maya's baby quilt.  Jeannine found a picture; I blew the pictures up on my printer and appliquéd the figures on these blocks. (and made curtains and bumper pad to match)

(I look pretty decent with my wig on!  😀 Keep that in mind when you scroll down to the pictures at the end. 😀 )

Once again, I had a great time – a nice size group of ladies that were very responsive. One of the ladies that came was the one we bought our house from and her mother who does beautiful quilting on a long arm machine.  It was a great evening.  One of the ladies had tears in her eyes when she thanked me for coming. 

I love speaking at these meetings because it gives me opportunity to tell my story and give my testimony.  I found out that all three churches in town have me on their constant prayer list. What a blessing it was to find that out!   Of course, I love to share my quilts and talk about my hobby, but I love giving God the glory for his blessings even more!

Jeannine and the girls are all moved into her new home.  She is so happy there, and the girls love it and feel secure there.  I’m so happy for her.

SO, once again, I just wish my head and face looked as good as I feel. I would almost think I was beating this thing.  But then reality sets in again....  UGH!

Here’s my prayer requests for now:

Pray this medication starts working on my head.

Pray that I do not worry about the future, but keep complete trust in God’s plan for me.

            These are the two main things!

Pray the pain remains at bay.

Pray I can stay hydrated.

I’m on my off-the-medication week, so pray that as I start back on it Saturday, the side effects will remain minimal.

Pray that I will continue to feel good, so I can remain active.

Pray that this does not continue to spread around my eyes.  I would hate to think I might lose my eyesight!

Pray for Guy.  He has felt “punk” for a couple weeks, but is starting to feel better.  And just pray for him as he helps me keep going.  I know this is all hard on him, but he is such a trooper. 

Remember to scroll down for pictures if you wish.

And as always……..I’m in His hands……

(I'm still growing hair on the right side of my head.) My right eye usually is swollen because I sleep on my left side. (gravity, I guess)