Changes

Phil has completed three cycles of Melphalan, and his light chain numbers are slowly going down.  Blood will be drawn again in early February, and we hope that downward trend will continue.  Phil is discouraged, and is suffering from increasing side effects, especially from the Dex, which he has been on for 10 months.  We will talk with Dr. Smith about it when we see him on February 3.

We are somewhat mystified over the latest news about Phil’s kidneys.  It appears they are working at 21%; below 20% and a person needs dialysis.  We are now engaged in an experiment to see if Phil can get off dialysis totally.  He started last Friday doing just two manual exchanges a day, and no cycler at night.  If his creatinine holds steady when checked in his monthly blood draw, he will be taken off dialysis completely for two weeks, and then his creatinine checked again.

We are not getting excited about this; we have been disappointed too many times since his diagnosis.  Our big question is how an accurate measure of his kidney function can be obtained when urine testing is done partly on urine collected overnight when his dialysis is taking place.  (We asked, but didn’t get much of an answer.  I suspsect it’s complicated.)  So we will see.  We had hints of this back in April when his catheter migrated out of position and he was also doing minimal dilaysis.  At this point, I’d be happy if he could simply do an exchange or two each day, or perhaps use the cycler a couple nights a week.

I’ve been struggling with depression again, perhaps because of reading that another blogger’s husband has only a little time to live.  At least, it seemed to start shortly after reading that news.  Perhaps it’s also because I’m also very tired, and have been in a lot of pain lately.  At least the days are getting longer – when we left for church Sunday night, around 5:30, it was still light.  5-1/2 weeks until we turn the clocks ahead.  I have to remember not to schedule anything that week, since it takes me a long time to recover from losing that hour.

On a lighter note, I have discovered a wonderfully funny TV show:  Monk.  Adrian Monk is an extremely OCD detective who always solves the crime, but drives everyone batty with his OCD ways.  Hilarious.  (I discovered that USA Network is airing reruns at 7:00 am Tuesday – Friday, and at 6:00 am on Saturdays, in addition to the new episodes on Friday evenings.  Since I don’t get up that early, I’m taping – yes, a VCR – them for later viewing.)

Emotions

What a roller coaster ride of emtions the past week has been!

Sunday we had a great time of worship in song.  I felt the Lord’s presence as I haven’t in a while.  My heart was touched by a man who gave a testimony of living in fear of his Muslim wife’s leaving him if he lived his life for the Lord.  He finally realized that obeying God was most important, and is ready to face whatever consequences arise from that.  Wow.  Tough stuff.

Monday I was hit hard with PMS.  It was one of those days when I couldn’t say anything right, and the harder I tried to, the worse it got.  I HATE those days.

The rest of the week seems like a blur.  I do know my emotions were brought under control, and aside from being really tired and my fibro acting up because of the weather changes, I’m feeling more positive than I have been.

This coming week will be busy.  Tuesday we see Dr. Smith; I am apprehensive about the next treatment for Phil.  Two reasons.  First, the unknown.  I honestly have no idea what he will suggest, so I haven’t been able to research anything.  For me, knowledge is power, it brings peace.  Second, I’m scared that this next treatment won’t work, either.  Guess I’m where I need to be – I have no other choice but to trust God!  Let’s see – Thursday we both go to our primary care doctor’s office.  Phil will get his last round of immunizations (finally!) and his flu shot.  I’ll get a flu shot and see the doctor.  I thought I ought to check in; if Phil’s treatment involves weekly (or more) trips to the hospital for treatment, my own needs will be put on the back burner.  I’m supposed to go stitch with Cheri that night.

Goodness!  I forgot the most important thing!  Friday is my birthday and we’re going out to dinner with my parents.  We chose Carrabbas – again.  I don’t think Mom & Dad have ever been there, but I’m sure they’ll like it.  We can’t afford to go there ourselves; the last time we went, Phil’s folks had given us some money and we treated ourselves.  The bill was just over $100!

Oh, yeah.  A very busy week.  I’ll have to be getting to bed much earlier, something I need to be doing.  Part of why I feel so horrible is that I stay up WAY too late.  And speaking of that, I’m going to go to bed now.

Failed

Phil has failed the Velcade protocol.  Six months, and a strong start, but ultimately, his Lambda light chain count is higher than when he started treatment.  Fortunately, it’s not out of control, but it is steadily going up.  Dr. Smith has ordered a “drug holiday” until at least October 28, as Phil is exhausted and has little stamina.  I honestly do not know how he keeps going.  He has been helping me with the dishes since we decided to put away our dish drainer to save space in the kitchen.  It’s just like when we were first married:  I wash, and he dries.  Tonight, he made Scalloped Tomatoes (from the Joy of Cooking) so I could concentrate on the main dish.  And later, he went out with Grace. I, on the other hand, did some cleaning, cooking, and clean up, and I’m exhausted.

I’m not sure where this leaves us.  What’s the next treatment option?  Will he fail that one, too?  We were so hopeful that he’d go into remission again.  Maybe he still will, but it means more poison in his system, and unending trips to the hospital for treatment.

The thought that keeps surfacing is that this brings us one step closer to the end.  Lately, every time I think about that, I get teary, so I try to stuff it back in.  Eventually it will all come out.

These verses from Proverbs 3: 5 – 7 keep coming back to me:

Trust in the LORD with all your heart, and do not lean on your own understanding.
In all your ways acknowledge him, and he will make straight your paths.
Be not wise in your own eyes; fear the LORD, and turn away from evil.

The other things that I’ve been mulling over is a song that we did with the worship team back at our old church, and which the group Grace is singing with now is going to do on Monday night as part of our missions emphasis.  The words and music are by Charlie Hall.

Single minded, whole-hearted, one thing I ask
That I may gaze upon Your beauty Oh Lord
That I may seek Your Holy Face
That I may know You in an intimate way
And follow after You all of my days

Chorus:
All of life comes down to just one thing
and that’s to know You oh Jesus
and make You known

©1999 Generation Music (Admin. by Generation Productions)
All rights reserved. International copyright secured.

The chorus says it:  everything comes down to knowing Jesus.  Living for Him no matter what.  Trusting that what He allows in our lives is making us more like Christ.  Even when it’s impossible to understand.

I am missing being part of a worship team more and more.  I probably don’t have the energy to commit to anything right now, but I still miss it fiercely.  There’s something about helping to lead worship that transcends being part of the congregation.  Hard to explain.  I guess it’s a moot point anyway since we aren’t members of the church.  (I don’t understand why Phil is holding back.)  Oh well, I’ll just have to look forward to (hopefully) singing in the benefit concert for Faith Ministries International in the spring.  I pray that comes together.

I’ll end with one of my favorite songs these days.  This is from the Hillsong album, This Is Our God.

Verse 1:
This is my prayer in the desert
And all that’s within me feels dry
This is my prayer in my hunger and need
My God is a God who provides

Verse 2:
And this is my prayer in the fire
In weakness or trial or pain
There is a faith proved
Of more worth than gold
So refine me Lord through the flames

Chorus:
And I will bring praise
I will bring praise
No weapon forged against me shall remain

I will rejoice
I will declare
God is my victory and He is here

Verse 3:
And this is my prayer in the battle
When triumph is still on it’s way
I am a conqueror and co-heir with Christ
So firm on His promise I’ll stand

Bridge:
All of my life
In every season
You are still God
I have a reason to sing
I have a reason to worship

Verse 4:
This is my prayer in the harvest
When favor and providence flow
I know I’m filled to be emptied again
The seed I’ve received I will sow

Pain

Today has been a climactic day.  For he past few days, I’ve been experiencing what for me is a hallmark of my fibromyalgia:  neck pain.  In fact, that’s what first took me to the doctor over 14 years ago.  Today the pain has been nearly unbearable, leaving me feeling nauseous and like I could scream.  Nothing has helped:  Tylenol with Codeine, heat, ice pack, muscle relaxant.  My neck muscles, in addition to hurting, are sore as if they’ve been used in strenuous exercise.  45 minutes ago I gave in and took one of my heavy duty pain killers.  Little relief yet.

This is what makes caring for my husband difficult:  my own pain can be so overwhelming and debilitating that I can’t focus on Phil.  Thankfully, I didn’t have to get him to any appointments today, although we did miss church.

Well, I have until Wednesday to feel better.  I will be praying for relief.

Affirmation

Monday I had my more-or-less annual appointment with my midwife, Joan.  The actual exam took more minutes, but Joan spent a long time just talking to me; she realizes that the events in my life have a profound effect on my physical health.  Of course, she’s right.

More than anything, she affirmed that I am bearing an incredible load, not just caring for Phil, but also caring for my girls, who, despite their ages (18 and 21), are still needy, and even more so because of their Dad’s illness.  She told me that it’s no wonder I forget things – I have to remember too much for the rest of the family!

As I’ve been typing, it crossed my mind that God affirms us every day by His working in our lives.  He sent His Son to pay the ultimate penalty for our sins – death on a cross – so we could live.  Nothing can ever separate us from the great love God has for us:

“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 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.”

~ Romans 8: 37 – 39 (ESV)

Brief Panic

I had a horrible moment of panic earlier tonight when I thought about my husband having left this earth for his heavenly home, and my being left alone because my daughters were married and no longer living in the area.  I had to stop myself and remember that I don’t know what the future holds for me or my children.  The verses in Proverbs 3 came to my mind:

Trust in the LORD with
ALL your heart,
and DO NOT
lean on your own understanding.
In ALL your ways
acknowledge him,
and he will make straight your paths.

~ Proverbs 3: 5 – 6 (ESV)

Also, from the apostle Paul:

Do not be anxious about anything,
but in everything
by prayer and supplication
with thanksgiving
let your requests be made known to God.
And the peace of God,
which surpasses all understanding,
will guard your hearts and your minds
in Christ Jesus.

~ Philippians 4: 6 – 7 (ESV)

I know I quoted this verse yesterday, but it bears repeating.  I do not know the future, so I must leave it in God’s hands!

Long Time No Write

It’s been a long time since I wrote anything here.  Too much has happened, I guess, and I’ve been busier than usual.

Phil’s July labs, or I should say, his Light Chain test results (these measure the progress of his cancer) showed a marked increase in the cancer cells.  We thought it was a fluke, so when we saw his oncologist later in the month, he immediately ordered a re-test.  No fluke.  This test showed that the cancer cells were now more numerous than when Phil started chemo in April!  At first, I was shocked and saddened, but as God worked in my heart, I felt peaceful, and have continued that way.

“Do not be anxious about anything,
but in everything
by prayer and supplication with thanksgiving
let your requests be made known to God.
And the peace of God,
which surpasses all understanding,
will guard your hearts and your minds in Christ Jesus.”

- Philippians 4: 6 – 7, ESV

What has helped is that Grace has taken Phil to chemo this month, since she is without a job (by choice.)  This has allowed me to focus on her, as she’s had a bunch of medical appointments, and also on myself.  I’ve gotten some sewing done – I have a lot more to do! – and have spent time reading, listening to music, and playing on the computer.  And although I am tired, mostly because I stay up way too late – I’m satisfied.

I was able to paint Phil’s room while Grace was away in July.  It was a big job – not the painting, but actually putting the room back together.  The girls are leaving this coming Tuesday for nine days in North Carolina with my folks, so I’m going to take advantage of the time and paint the master bedroom.  I’ll be putting lots of stuff in their rooms, which will make things much easier.  I’d love to continue on into the master bath – I’m thinking of painting it the same lovely blue (Valspar’s Prairie Sky) as the window wall in the bedroom.  We’ll see how things go.  I believe that once the master suite is done, that’ll just leave the breakfast area, for which I already have paint, and which will be a quick job, plus the craft room.  We’ll have to hire someone to paint the stairway.  I plan to stencil in the upper corners of the bedroom windows, and would like to do a lattice fence stencil in the bathroom.  And after painting the breakfast area, I’ll have to redo the stencil I did there, which will be a bit time-consuming.  I’m hoping that it will still show through the paint since I’m not planning to prime over it.  I like the positioning of it.

The other big thing for me is that I saw the orthopedist about my arthritic knees.  My right knee is in bad shape; so much so, that I was offered a partial knee replacement.  I told the PA that it was out of the question for now – I have to be able to care for Phil and drive him to appointments and chemo.  I opted for a cortisone injection, a very painful ordeal which left me virtually unable to walk for a couple of days.  I used a cane for many days.  Since the injection, I’ve experienced numbness (which feels like extreme cold) in my leg; I’ve no idea whether it’s related or not.  Tonight it’s better, so perhaps whatever it is is resolving.  I am having less pain in the knee, although the relief is not consistent.  I still need to decide whether to have the doctor’s office complete the paperwork for approval to try Synvisc.  If I go that way, I’ll have to time things properly, as it requires three injections over three weeks, and if the cortisone experience is any indication, I’d better count on not being able to walk or drive for most of that time.

I am thankful to be in such a good place right now.  Oh – I didn’t say that I had to go off the antidepressant because it made me extremely sleepy (I was sleeping 12 – 16 hours a day, and still awaking exhausted!)  I am coping well.  Praise God!

Lots to do in the coming weeks, but one day at a time.

Fibro Flare

It would seem I am in a fibro flare, as those of us with fibromyalgia call an extended period of extreme symptom flare up.  I am terribly exhausted, wanting only to sleep, despite sleeping 11 – 13 hours at night.  I am also experiencing tiredness in my muscles from slight exertion.  Trying to put laundry on hangers was agony, and climbing up the stairs is difficult.  I tried to cut out more fabric today, but it didn’t take too long before my hips were aching and I could hardly stand.  I will try again tomorrow.

There isn’t much I can do, other than wait this out.  I will try taking less medication tonight, just in case that’s what’s causing the exhaustion.

What’s ironic is that I am making more of an effort to take my vitamins on a regular basis.   Ha, ha on me.

Chemo & Blood Counts

I keep thinking about how much we want Phil’s July 1 labs to show that his cancer has been beaten back down.  His early June labs showed his Lambda light chains were around 5, so all that we need is for that number to be cut in half.  As I recall, in April, then number was 13-something; in May, it was 8-something.  We are making progress!  We just want the chemo to be done with and for Phil to regain his strength and stamina.  Poor guy – he’s so tired.  His oncologist will be on vacation the first two weeks of July, so he won’t see the lab results until he returns.  I believe Phil’s next appointment is on July 23, so he’ll have chemo on the 10th, and then we’ll see.

Just thinking about it makes me smile – the end could be near.

Feeling Better

Has it really been over a month since I last posted?  I guess that’s because I am feeling better!  It took a month, but the antidepressants finally kicked in, and I am noticing a difference.  I’m not obsessing about Phil’s illness and eventual death.  I have actually laughed and felt joy.  I’m actually getting some sewing projects together, although I’ve not yet sat down in front of the machine.  I have also renewed my love of reading, having finished four or five books in the last month.

All in all, things are looking much better.