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.

Cancer Survivor?

The definition of a cancer survivor is dependent on who is using the term.  To me, however, it connotes someone who has fought cancer and won (i.e., is cured), and is still alive.  By this definition, Phil is not a survivor, because his cancer cannot be cured.  It will kill him.  No one survives Multiple Myeloma.

I’m not certain as to why this is bugging me.  Perhaps because I am a stickler for accuracy - somewhat of a perfectionist - and to label Phil as something he will never be is, to me, just plain wrong.

But that’s just me.

Doctor’s Visit

I finally saw my Internist today. I have been trying to schedule an appointment for two months, but with everything that’s happened with Phil, I just couldn’t find a week in which I was willing/able to commit to another outing. Sometimes - often - it’s frustrating that I have to micromanage my time because of my fibromyalgia and the severe limitations it places on me.

Anyway, as “luck” (I don’t believe in luck, but for a lack of another word, I’ll stick with it) would have it, the doctor was being shadowed by a resident today. I should have refused to see him, but I didn’t, so I ended up telling my story three times: first to the nurse, then to the resident, then to my doctor. Brother. It was nearly 3:00 by the time I was finished with my 1:30 appointment! I should say, however, that I am relatively pleased with the results of the visit. I went for x-rays on my painful knees with the agreement that, if needed, I will see the orthopedist if needed; if the pain is simply arthritis, I will have to learn to put up with it (most likely.) I wrangled a prescription for a stronger pain medication. I’ve been taking Tylenol #3 for a long time, and it just isn’t doing anything for me anymore, so I am trying Percoset. And, most importantly, I have samples of Lexapro, which I am hoping will work to ease my depression and get me over the hump during this very difficult time. The doctor was hesitant to give me any more antidepressants, and wanted me to see a psychiatrist, because they are more knowledgeable about giving larger doses of antidepressants. As it turns out, my 200 mg. dose of Trazadone isn’t something he would every have prescribed (I take it for sleep.) That indicates how long I’ve been on it as I believe it was given by my first Internist (who left our city for a position further south when the HMO’s in our community began shaking things up. We have all paid for that, as now we have a terrible shortage of doctors.)

We will see how things go. I took 1/4 of a Percoset a while ago in an effort to ease the terrible pain in my right arm, which was aggravated by the positions I had to assume during my x-rays (unsupported arm.) If 1/4 doesn’t do it, I’ll take an additional 1/4. I don’t want to be out of it, as Phil has chemo tomorrow at 2:30, then we have to take the dog to the vet at 6:40.

BTW, May 12 is Fibromyalgia Awareness Day!

Depression

I am convinced that I am depressed. I found several online depression tests, and each one came back the same: I am seriously depressed.

Now to convince my doctor.

When I approached him last October about it, he said that, because I take two antidepressants for sleep, he didn’t want to add another one without a letter from a professional counselor that I was indeed depressed. At that time, I didn’t want to pursue that. But now, I would be willing to. Especially since I can talk to the counseling pastor at church. No cost to me. And advice from a Christian.

Actually, it’s no surprise that I’m where I am. Phil’s relapse, my own physical problems, feeling alone.

Symptoms of depression include:

• Loss of interest in normal daily activities YES
• Feeling sad or down YES
• Feeling hopeless SOMETIMES
• Crying spells for no apparent reason I WOULD, IF I ALLOWED IT
• Problems sleeping YES, MORE THAN USUAL
• Trouble focusing or concentrating HARD TO DETERMINE
• Difficulty making decisions NOT REALLY
• Unintentional weight gain or loss I’M OVEREATING
• Irritability OH, YEAH
• Restlessness NOT REALLY
• Being easily annoyed YES
• Feeling fatigued or weak YES, BUT SOME IS NORMAL
• Feeling worthless NOT REALLY
• Loss of interest in sex NO
• Thoughts of suicide or suicidal behavior ON RARE OCCASIONS
• Unexplained physical problems, such as back pain or headaches MY KNEES???

(from the Mayo Clinic)

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Yikes, that’s not good.

Well, we’ll see what the doctor says this time. I’m going to approach him with the idea of going on something for, say, six months. And if there’s no improvement, I’ll get counseling.

I sure hate feeling like this. There’s no joy in anything I do.

Thank God, He is still there. If He weren’t holding on to me, I’d be in worse trouble.

We’ll see what happens on Wednesday.

Bad Day

Does anyone remember the children’s book, Alexander and the Terrible, Horrible, No Good, Very Bad Day ?  Substitute “Ginny” for “Alexander” and you’ve got how I’ve felt today.

At least part of it is PMS.  I’ve had it bad the past couple of cycles, and I think it’s partly stress-related.  I just wanted to scream at everyone.   And the despondency!  How much lower can I go?

My question for today is, “How can I, as a caregiver, take care of myself, when I have so many limitations because of my own health problems?”  I have moderately severe fibromyalgia, and require a lot of sleep (10 - 12 hours), cannot go out more than two, sometimes three, days in a row.  I am in constant pain these days.  I simply need down time - a lot of it.  But it’s not to be.  Although we canceled today’s appointment, partly for my sake, but mostly because Phil is still in pain and very, very tired, I do have to go out on Wednesday (to take my daughter to pick up her car from the repair shop.  I will then do the week’s errands, a job that my 21 year old usually does), and then chemo on Thursday.  If I’m able, Sarah will go with me to our friend’s house in the evening to do some stitching.  We refused to reschedule today’s appointment for next week, because I have not been able to see my doctor due to all of Phil’s appointments the past two months; I made my appointment for next Wednesday.  It works out that Phil can come with me and have his labs drawn while I’m with the doctor - same building.

Sigh.  Things will get better, right?

Getting Started

December 16, 2005:  The day that changed my life.  It wasn’t the first such day - August, 1979 and May 26, 1986 - the month I accepted Jesus Christ as my personal Savior, and the day I got married - they also qualify as life changing events.  But that fateful December day when my husband was suddenly admitted to the hospital . . . well, that was different.  By 6:00 pm, we heard the words “Multiple Myeloma” for the first time.  It didn’t mean much to us.  After all, our knowledge was limited to the fact that Phil’s kidney’s weren’t working properly.

By the next morning, however, we both knew what Multiple Myeloma was.  An incurable, always fatal, blood cancer.  At that time, life expectancy was 3 - 5 years.  We were devastated.

While enduring hemodialysis three times a week, Phil dealt with induction therapy of Thalidomide and Decadron (”Dex”), which left him with severe muscle wasting, and toxicity from too much Thalidomide.  That was followed by an autologous stem cell transplant, which put Phil in complete remission, and which restored much of his kidney function - not enough for him to get off dialysis,  but enough to eliminate the need for a special, very restrictive, diet.  June, 2007, brought an end to hemodialysis, as Phil switched to peritoneal dialysis, which is done at home.  Last month was the end of Phil’s remission, and he started on Velcade and Decadron at the beginning of this month.

We’ve just been through the two most difficult weeks we’ve had in a long time.  Phil’s dialysis catheter malfunctioned.  Of course, the surgeon was away on vacation, and we had to wait until this past Monday to see him.  From the first sign of a problem to his surgery to correct it this past Thursday, Phil endured painful and very difficult draining of the dialysis fluid three times a day.  We filled him up tonight, and will see what happens when he tries to drain in the morning.  Perhaps he will be able to resume using his automated cycler machine Monday night.

All that leads to the reason for this blog.  I had intended my Holding Faith blog to be a place where I could write about being my husband’s caregiver, but that was not to be as Phil started reading it.  I am planning to keep this blog private in the sense that I’m not going to let people know it exists; if you have stumbled on it, you are welcome to read it, and leave me comments.

And so it begins.