Tuesday, December 19, 2017

Today my thoughts and emotions have run the gamut.

Last week on Tuesday I saw Dr. Page in McPherson. He seemed pleased with my progress after the 1st dose of Adriamycin.  I had two issues going on.  I had had 2 of those really weak spells and one mild one in the week before, and I had developed a sinus infection.  He gave me a prescription for an antibiotic, and told me I needed to get a liter of fluids.  He told me that I should call and come in for fluids any time I was having this difficulty.  He said any time I had any queasiness I should “not try to be a hero” and just go on and take those pills.  I sure do like him and so glad I made the change from Hutch.  I miss the Hutch infusion center and the nurses there, but I’ll just stop in occasionally and see them.  The McPherson infusion center is good, too.  Just need to get acquainted there.  Their chairs are big puffy recliners!  They are so nice and comfortable!  After getting lab drawn, they gave me a liter of normal saline, and other than my miserable sinuses, I felt much better.

By Saturday, I still didn’t feel good, but by Sunday morning, I was able to go to SS and church and play my keyboard.  I actually did pretty well for the whole day.  Most days, by the time I get a shower or sponge off, get dressed, and eat breakfast, I’m pretty well shot for the rest of the morning.  I wake up most mornings with great intentions of getting something really accomplished, but by noon, my tail is dragging.  I have Christmas gifts I want to work on, but just run out of steam.  Oh, by the way, I did find the power cord and foot petal for my Bernina!!  Woo hoo!  Why in the world I put them in that bag and not in the box with the machine, is beyond me. I really want to try to get some embroidering done this week.  We’ll see how motivated I get.  J  They will not be done for Christmas, but they’ll just get them when they get them.

Yesterday we went to Overland Park to Mark’s.  He has been gone for weeks, but Amy has been there with the boys. Oh, my, she needs to be a home decorator!  The house was so beautifully decorated for Christmas!!

I got up this morning and found a big bald spot in the middle of my hair side.  I had taken a pillowcase to put over the dark blue one on the guest bed.  I’m glad I did.  Three to four weeks – right on time.  Well, I won’t have to bug Guy anymore to shave my hair.

Today my thoughts and emotions have run the gamut.  It has not been an easy day.  It was not an easy ride home.  I’ve pretty much been lost in my thoughts the rest of the day.

This morning I went to see Dr. Powers for my regular check back after the 1st chemo.  I had sent him pictures a few weeks ago, and he said he wasn’t sure what to expect when he saw me today.  But he seemed pleased with the progress after just one treatment.  He gave me a big hug, and said something about “1 year”. I told him, other than the sinus infection (which I’m pretty much over now), I had been feeling good.  I hadn’t really suffered any of the side effects from this first dose.  I told him the last time I was there, he had showed me two small places – one in each lung, but the final report showed three small places in the right lung.  He acknowledged that.  I asked him about those cancer markers, and if my results had come back.  He said they had – what they look for is that PL1 marker, and that says that immunotherapy might be appropriate.  But mine came back absolutely negative, so I was not a candidate for that.  He said we would just continue with what we were doing, and if it stopped being effective, there was still the Avastin, pills, and clinical trials.  Then he got really serious, like he has in the past.  His talk when something like this:

HIM: It is not easy to talk about things like this, especially around the holidays, but my advice to you is to do everything you can to enjoy the Christmas holidays this year.  Celebrate all you can. If there are things you really want to do, do them.  Places you want to go, go there.  I can’t tell you what 2018 will hold for you.  No one has any guarantees – not me, not you, but I would just urge you to take advantage of the holidays as much as you can, because, frankly, given your history and the aggressiveness of your disease, we just don’t know.  We’ve given you a long round of chemo, a round of radiation, and in spite of what we do, this cancer persists and has moved to the liver (which was zapped) and now to your lungs.  Given the progress we see on your face, we hope that the same progress is occurring in your lung.

ME: I haven’t ever really asked you this, and perhaps I really don’t want to know, but I think I have to ask.  What do you think my life expectancy might be?  What really is my prognosis at this point?

HIM: As I said, we really can predict, especially as you continue to feel good, but I would say that you have to think of in terms of months rather than years.

ME:  (a bit of silence)……I know this on my head won’t kill me, but it’s the liver and lungs, isn’t it?

HIM: Yes.

Months rather than years…….months rather than years…….whoa!  That hit me like a ton of bricks.  It sucked all the air out of the room.  That wasn’t what I had in mind.  I had pretty easily made it this past year, all things considered – actually 18 months!  I’ve had every intention of beating this – God and I.  Or at least living with it under control.  

I wanted to cry, but my eyes were dry.

Instead, I reiterated the fact that as long as I was feeling good, and there were still workable options, I was not giving up, and I was going to fight this. I kept thinking…….he doesn’t know how many people are praying for me.  Maybe he doesn’t know that my God is all powerful.  With Him nothing is impossible! 

He hugged me again, told me Merry Christmas and make the most of it.   There was that phrase again!  Like a dagger!

The nurse said they would leave open the date for the next scan.  Dr. Powers had said he wanted me to have a least a total of 3 doses before he did another scan.  Rather than schedule it now, since there is no guarantee that all my doses will come off as scheduled – depending on how my blood counts go, I might have to take shots to build up if they go too low.  Oh, I pray I don’t have to postpone any doses!!  Although the spots have gone down, it seems to me (and Guy) that the redness has darkened somewhat over the last 2 days.  So I sure hope that I get to take the chemo Thursday of this week.

It was a rather glum ride home.  Guy tried to reassure me that no one knows – we’ll just keep fighting it.  I kept hearing “months rather than years……months rather than years……”  When we got near the house, I told him, “If I could just have a good cry, I could maybe move on, but I’ve got no tears.”

I guess I’m allowing myself to process all this today with feelings on a real roller coaster.  Sometimes I feel hopeless; sometimes I feel hopeful.  Tonight, as I go to bed, I’ll lie down, and thank God for safe travels, for being at my side through thick and thin.  I’ll ask Him once again for healing, as I do every day.  I’ll see if He brings to mind a special old hymn to encourage and comfort me, as He does almost every night.

Tomorrow will be a new day.  I’ll go to the ladies’ Bible study Christmas luncheon and surround myself with lots of wonderful ladies who love me dearly and are super supportive.  And who knows……I might even get around to plugging in my sewing/embroidery machine…..Please keep up the prayers!!!  And thank you in advance for them!!!

And as always……..I remain in His hands……..

Wednesday, December 6, 2017

A week after my chemo....

I have to say that, over all, I’ve had a pretty good week. It’s been a week now since the 1st dose of this 2nd round of chemo, Adriamycin.  I didn’t really know what to expect, but they told me the most common side effects were mouth sores, nausea, and fatigue.  Perhaps it is because I’ve just had one dose, but the SE did not really occur.  Certainly, the mouth sores were not an issue.  Perhaps it was the power of suggestion, but occasionally, I would say that I got a little queasy.  Mostly, I just lost my appetite.  Nothing really sounds good to eat.  That makes it really hard to cook.  Thankfully, Guy’s friend from Alabama is still here, so they want to eat out a lot.  Nothing in the restaurants sounds good to me, either.  I did fix some home-made chicken and noodles one day.  Instead of my home-made noodles, which I always make, I had purchased a bag of noodles from the Amish nearby.  It was not the same, but it was OK.  Guy had made a great big pot of chili a week ago, but what usually is very good to me, has not been very appealing.  I guess all this is good, because I’ll not gain a lot of weight like I did with that 1st round of chemo.

The day after the chemo, I felt great.  I realized that all the little aches and pains (including my pesky side ache) were all gone.  But I discovered they all returned after the steroids of the chemo-day wore off.   The next day (Friday), I did not feel good – was dizzy, tended toward diarrhea, shaky.  Then that night I discovered that I had forgotten to take my Cymbalta the night before.  Those were all SE of Cymbalta withdrawal.  ARGH, missing one day of that pesky pill threw me all off!!  I’m still tapering off of it; I’m half-way – 81 beads left in, 81 beads taken out.  It is a slow process.  But Saturday, Sunday, and Monday were pretty good days with just a tad of queasiness now and then.  I get sleepy pretty easily, so fatigue is once again an issue.

Yesterday morning, I got up and ate breakfast.  I was trying to decide if I wanted to take a shower or just sponge off.  I started feeling a little weak, so thought it was not wise to get in the shower.  As I finished sponging off, I realized that if I did not get to the bed, I was going to faint.  I hadn’t had one of those spells for a very long time, but it sure hit hard.  By the time I felt good enough to find my BP cuff, my BP was 102/66.  I usually run 120-130/70-80.  It took a long time to get dressed, but once I recovered, I felt fine the rest of the day.  This morning, I thought the same thing was going to happen, but it was not as bad.  My BP was still low, so I held one of my BP meds.  I went to the ladies’ Bible study and did OK, but took a long afternoon nap.

One VERY good thing I’ve noticed this week is that the spot on my cheek has definitely lightening and recessed.  Just last Sunday, it was still very dark purple, and the spot was bulging to the place where I was afraid that it might break open.
This is last Friday.

This is today.

The spot on my forehead, too, seems to be shrinking and acting like it might scab over.  I still have a lot of redness on top of my head and down onto my forehead and around my eye, but I’m absolutely amazed at the progress after once dose of this chemo.  I sure wish I could look inside my right lung and see what those 3 spots are doing!  And I hope there are no more developing in my liver.  Tomorrow, I go to the infusion center to get labs drawn.  The next week I see Dr. Page and get labs, and the week after that, I go to see Dr. Powers in OP.  I don’t think he plans to do a scan at that time – I guess he’ll decide then when to do the next scan. 

So far, I have not sewn a stitch.  L  There is so much I want to do.  I want to make some of those reading pillows.  I have several of the embroidery designs to do it, but one of the issues is that when I unpacked my Bernina 830LE from the moving boxes (original boxes), the foot pedal and power cord did not get packed into those boxes.  I can’t imagine why or where they must be.  I still have a lot of boxes labeled “quilting” that I have not opened.  The other issue is that half of my sewing stuff has been moved to the basement from the ground floor bedroom.  There is twice as much room down there than in the bedroom.  But there are 3 large bookcases and 4 smaller bookcases that need to be moved down there from the bedroom, so I can get all my fabric put in them.  Neither Guy nor I can move them, so we are going to have to call the movers we used to move into this place.  Last weekend, Mark worked really hard in the garage and took the boxes from the south side of the garage downstairs to the storage room.  Wow!  He worked so hard.  It was a lot of boxes.  I was afraid he would be sore for days, but I guess he is in pretty good shape!

I’ve never been this late decorating for Christmas.  I got my favorite nativity set put up.  This is the one Jeannine gave me several years ago, and I just love it.

I’ve never had a place without a mantel, so it is a bit challenging to decide where to put my decorations.  I put the nativity set up on the piano.  Our living room and kitchen are one big room, so I still haven’t decided where to put the Christmas tree.

Guy’s friend from Alabama is still here.  They’ve been going out every morning and evening, so Marion can get his deer.  It’s been a frustrating time.  He had one chance to get the big one last week, and his gun just “clicked” – something about the ammunition he was using.  Today, Guy was up at the home place (out at the farm), thinking he would flush them out and down to Marion down south.  Marion should have been with him, because Guy flushed the big one out, but he took off another direction.  Last week, the weather was nice; this week, the moon has been shining BRIGHT (the Super Moon), it has turned cold and WINDY – not good deer-hunting conditions.

You know, you watch some TV, and you see the “beautiful people” and what is important to them.  Some of it may have been somewhat important to me at one time, but all it takes is a major disease in your life to put things into perspective really quickly!!  You find out right away what is important in life.  I was also watching the fires in California.  You put your whole life into a big beautiful home, and it’s gone in a few minutes. Tragic in so many ways…..

Whether this cancer is fading due to the chemo or all my prayer warriors (or both!), I do not know.  I just know that I’m VERY grateful for every day that I see improvement and for every day that I am not sick.  And I give God ALL the glory.  He is my constant Companion.  On days that I’m tempted to focus inward, I remember how precious my devotional book is, and how He speaks directly to me through it.  I never take my prayer warriors for granted, either.  How VERY thankful I am for each one of you!!!!!  I know there is power in prayer, and when you say you pray for me, I can’t tell you how much I appreciate that!!

As always……I remain in His hands……