Wednesday, February 24, 2016

Adventure In Pain

Lots has happened since my last post, and this is a record of those events.  I have to write it somewhere.  It's interesting to me, part of the journey, but you'll be the judge.  It's mostly whining.

Background for the reader:  Last Wednesday I had an infusion of a study drug and an infusion of Zometa, and also began a week of oral Valtrex in case my back pain might be the prodrome for shingles.  By Friday the pain in my back and abdomen was much more pronounced, continuing into Saturday.  I posted about that here.

Saturday, February 20, 2016:

I have a new respect for people who are obliged to tolerate serious, chronic pain.  It consumes me, clouds my mind, makes focus difficult, and I want to lie down and sleep until it goes away.  But sleep is not always possible either.  I can't eat, because nothing sounds good and because it would probably come up again anyway.  To other people I must be a total dud, a zombie, no personality at all except as a whiner.

Saturday evening my sweetie took me to the emergency room at a small but very competent local hospital.  Since the pain seemed to be located in the right rear quadrant of my lower abdomen, they did a CT scan there.  They found nothing, sending me home with a prescription for Vicodin (not fillable at that time of Saturday night without a long drive).  Factoid: Vicodin prescriptions can't be faxed in - you have to bring a paper copy to the pharmacy with the doctor's actual signature on the actual paper.

Sunday, Feb 21:

I had a bad night with little sleep, but in the morning my right eye was acting strange.  The eyelid drooped, it hurt a little to look to the side, or up, or down, and at first I couldn't get it to point where the left was pointing.  I was concerned that this might be another symptom of the onset of shingles, this time in the eye, so at 8:00 am we were in Urgent Care.  We saw a very competent NP who basically instructed me to contact the on-call eye doctor and get my butt over there.

I did, and she was wonderful, opening her office for me on Sunday.  After almost an hour and a half of tests she concluded that shingles was a very unlikely cause of my symptoms, though she couldn't actually diagnose the cause.  If symptoms worsened she wanted me to come in the next day, a normal work day.  If not, then Tuesday to see another eye doctor.

The abdominal pain had not gone away, of course, so she tolerated my mopey zombieness quite well I thought.  That pain made for another miserable day and night, with little sleep of any quality.  Neither naproxen nor acetaminophen helped much, though I didn't try them together.  I stopped the Valtrex, just in case it was part of the cause.  No help.

Monday, Feb 22:

The right eye seemed a little better in the morning, not normal, but no need for another urgent eye-doc visit.

By 7:00 am I was calling for an appointment with my regular primary doc, who is a good one.  His schedule was full until Thursday, so I got an appointment with a different doc who is an internist but has experience with myeloma patients.  Then I went back to the hospital for an ultrasound of the lower right abdomen.  Like the CT scan Saturday night, the ultrasound found no problems.

The doc was lucky draw!  He quickly sorted out the options, cut through the crap, and diagnosed the pain as (1) A reaction to the Zometa infusion, or (2) Pressure on the spinal cord from the myeloma and associated inflammation.  If he was right the pain wasn't in the lower abdomen at all, it just felt like it.  Like the ER doctor, he recommended the Vicodin, especially at night.  "You can't heal if you can't sleep."

I went home and thought about inflammation.  What is the most powerful anti-inflammatory I have on hand?  Dexamethasone (DEX) - everyone knows that.  Willing to try almost anything, but not ready for the Vicodin until evening, I took one tiny 4 mg DEX tablet.  That's not much DEX - in myeloma treatments a normal dose of DEX is ten of those tablets, totaling 40 mg, once per week.  It didn't help right away, but I went to bed about 2:00 pm and was able to get to sleep.

I awoke three hours later and the pain was gone.  All of it.  That tiny tablet of DEX was MAGIC!  I had a wonderful evening, ate well, had a beer, enjoyed some TV with my sweeties, then slept like a log.  As life should be.

Tuesday, Feb 23:

Fasting blood glucose was 114 and pulse oxygen 98 on waking.  I sometimes measure glucose when on DEX, and this was a different dose.  114 is fine.

The right eye seemed still better, though not best yet.  I saw another ophthalmologist, who concluded that the cause was most likely a temporary loss of blood flow to a nerve bundle that serves the eyelid and the muscles which steer that eye.  The eye itself is fine, not involved.  This happens, he says, and in my case the nerves luckily seem to be recovering, and might actually recover fully.  What caused the loss of blood flow?  He wouldn't opine, but there sure is lots going on.  I have a followup appointment months from now.

The back and abdominal pains were still gone, and I felt wonderful, full of pep.  We went to the YMCA where I walked three miles at a pretty good pace of about 14 minutes per mile.  This was a very good day!

Toward afternoon the pain began to return in my back.  By bedtime it felt as though a blunt object like a butter knife was pressed hard against my back along the right side of my spine.  Though the abdominal pain did not return, this sharper pain also became a 7 of 10 and made sleep difficult.  I kept trying to find a comfortable position, but position didn't much matter.  At midnight I took a Vicodin, my first, only to find that it had no perceivable benefit.  At all.  The pain remained.  The bottle says it's OK to take two, but if one didn't help at all then I supposed that two would only double the side effects without much benefit.

Therefore, at 2:00 am I gave up on the Vicodin and took another 4 mg tablet of DEX.  Three hours later I felt much better and slept soundly.  Better to treat the inflammation than try to mask the pain, I guess.

Wednesday, Feb 24 (today):

The right eye is better yet.  Waking blood glucose on DEX was 116.

The back pain isn't entirely gone this time, maybe a 1 or 2 of 10, as it was for a few weeks prior to last Wednesday's infusions.  Why wasn't the DEX as magical this time?  Did the inflammation get a little worse in two days, or have my body and the inflammation become accustomed to the DEX?  Anyway I sit down carefully right now, instead of plopping into my chair.

What's next?

I may be off the study - I don't know if two little doses of DEX are permissible, especially when it seems that more doses may be necessary.

I'm not sure that I care, though.  In my opinion the myeloma markers should have turned the corner and headed back down within these eleven weeks of the study.  I have calls in to both of my Mayo doctors to discuss this, and to discuss the future regimen if I go off the study.  They are good at calling back - I'm sure I will hear from someone by tonight.  I'll report back to you.

If you have actually read all of this, you have gone well beyond the call of duty.  You are my hero!  If you didn't read all of it, I suspect you are in very good company :-)

Be well, be strong.


  1. I read every word. I always read your blogs but have not commented before. I have always admired your tenacity, especially with respect to running and your general fitness regime. I worked out consistently before myeloma, and have had trouble getting back into it since. I hope your current pain and associated problems resolve soon. I am amazed at how well you catalogued everything, considering how much pain you had to tolerate. I agree with you; it must be inflammation either from the myeloma or perhaps bursitis, tendonitis or arthritis. As my myeloma doctor always reminds me, things other than myeloma can cause pain,, especially amongst we "senior citizens."

    Good luck and please keep posting. I hope you feel better soon!

    1. Bless you Ellen,
      So you're the one who reads my blog! :-) Thanks for your comments. I just wrote to another friend that I believe I see the light at the end of the tunnel. Hope is good. Best wishes on your journey. Take care,

  2. Geez, it sounds awful. I would be off the the study quick as a bug?( oh, well, trying to be funny). Seriously, I , like you have a pretty high pain tolerance, so if this is inflammation from myeloma, you need to start on a different drug regime. ( Just my opinion). It is curious how dex helps with inflammation. I think if it was just arthritis or ?, you would have had that before. I have a L1 that is bulging. it doesn't bother me except when I try to do to much then its a pain in my low back.
    I hope you get some answers today.
    Best to you.

  3. Don:

    Sorry you are experiencing so much...whining!
    Seriously, you have been like a swiss watch for the past decade, so your events are indeed unsettling. I think things will turn around. I had lots of back pain, that opiods didn't help. I stopped the opiods, got on low dose Naltrexone ( and Wellbutrin) and much of my inflammation and back pain was gone. A Drug called Contrave is used to cut weight. That is why I take it. The Naltrexone really helped with spinal swelling/ inflammation.
    ( several good articles in Pain Journals)

    I was not depressed--per long time Internist, just swollen from all the chemo. So far, so good.

    I hope you get answers from your Study MD's.

    Always enjoy your postings.

  4. I enjoyed your article. I'm always impressed with 14 minute miles. If I tried that pace my doctor would get writers cramp from writing so many prescriptions for Vicodin.
    Confucius say, "Man who ask for Vicodin by name, get Tylenol"

  5. Enjoyed hearing from you and I read the whole post. Anxious to hear what the next step will be. Steve is now on Kyprolis, Dex and Revlimid and so far seems to be really working after being on a study that didn't work at all. He too found going back on Dex (after being off while waiting for two fractures to heal) was such a relief. It's funny how the drug he most hated gave him so much relief from pain throughout his body. Another thing, as long as you aren't on a study you can get the treatment at a hospital down here instead of two days every week at Mayo.

  6. Thank you Ellen, Christine, Laddie, Craig, and Steve's Mom. We learn from each other, don't we. New post coming up ...