Wednesday, January 16, 2013

Thank you St. Anthony

Yesterday I shared with a bunch of friends that I'd invoked a prayer to St. Anthony in desperation on a hunt for my eyeglasses, up against the clock ticking toward a not-to-be-missed medical appointment.

Obviously they were in the condo, but I'd searched everywhere I'd been, everywhere I hadn't been, even into closets I hadn't touched.  I knew I'd taken them off to take a shower; there were a limited number of places I could have put them.

I peered out into the dark, rainy morning.  I knew I'd be a hazard if I tried to drive without them.  Finally, I decided to give St. Anthony a try.

I'm a convert to Catholicism.  Many of the quirky prayers and beliefs associated with this faith-for-the-masses I scoffed at during my upbringing as a proper Episcopalian and haven't made much attempt to learn about them since joining the Church.  Still, I remembered a children's prayer I'd read somewhere (probably in a novel about somebody's Catholic childhood) so I chanted, feeling very silly indeed:

Tony, Tony, turn around!
Something's lost and must be found!

Then I shrugged my shoulders, said, Oh well, and walked into the bedroom.

Hmm, maybe they fell off the nighstand and under the bed?

I got to my knees and peered under the bed.  Oh, well, I muttered yet again, preparing myself to come up with Plan B and bracing myself against the bed frame and the nightstand on my knees to stand up.

And there were my glasses, right at eye level, lying on a coverlet whose pattern obscured them from my weak vision when viewed from above (because I had looked 50 times on the bed for them at least) but perfectly obvious when viewed from this angle.

Thank you St. Anthony! I whooped, put the glasses on my nose, the dog in her crate, and headed for my appointment.

To my amazement, upon opening my car door, there between the door and the driver's seat lay a set of keys I'd lost ten days ago.  A double whammy!

How does it work?  It does work!  I know it works! I marveled.

I think it's this: We are literally blinded by our own efforts and anxieties.  The minute we turn it over to a Higher Power, the blinkers are removed and we are given to see what we could not see just moments before.  Somehow we take that concern and set it aside,

And though there are many long, adult, theologically puffed-up prayers to ask St. Anthony's assistance in finding lost items, I think I'll stick with the tried and true.

I seem to recall someone saying that we needed to approach our faith as a little child anyway,

Last week I wrote of Kelly's continuing problem with jaw pain.  I said that I was afraid my concern combined with my inability to do much (last week was chemo week; enough said) was causing confusion over her care.

I said as much to Casey and Cathy, and whether or not it was is a moot question now.  Jerry, I, and half the Ranch are frantic over her distress.

Kelly has always overridden and denied pain, which is not uncommon among people with intellectual disabilities.  She'll soldier on in silence to the point that it's only when something has become obvious and extreme that she will say anything at all.

At the same time she is somewhat phobic about medical procedures, which is another reason she denies anything is wrong.

Yet she is in such obvious distress that all of us at the Ranch are wringing our hands.

Kelly has been diagnosed with temporomandibular pain, which means her jaw(s) hurt.  We know the bottom one hurts.  We don't know about the top one.  She reports "It feels funny."

Does it ache? Throb? Is it numb? Are pains constant, intermittent, deep, stabbing? Are they 1,2,3,4,5,or 6 on the pain scale?  I have asked the questions every way I know and I get, "It feels funny.  I want it normal."

Well, normal we understand at least.

What has caused this?  The mouth ulcer that caused her to chew on that side for two weeks?  The Botox treatments that allow us to help her clean her gums in that area?

Yesterday Laura and I took Kelly to see the oral surgeon.  Fifth appointment in three weeks: two dental, one ER, and one medical, plus yesterday.

I must admit we're used to the quick fix.  Growing up, Kelly was as healthy as any of my kids, and healthier by far than the first two, who made careers out of ear infections and producing strep germs.  We're not used to long, protracted pain.

"I want it gone on the cruise," she wails, which starts January 24.  I finally had to tell her it doesn't look like that is going to happen.

Dr. Buchanan, Kelly's oral surgeon with whom we've worked for years, gave us a long list of probabilities on what is causing this, and what treatments might be effective.  He was generous with his time and gentle in his concern. I have complete faith in both him and Dr. White, Kelly's dentist.

General consensus: my cancer is causing Kelly's jaw pain.

In other words, knowing that I have a serious illness has overloaded her ability to ignore her distress, and it is coming out in clenched jaw muscles, tooth grinding, etc.
Dr. Buchanan advanced many possible theories as to cause, but hands down agrees with Kelly's dentist that there is most likely no organic cause of the disorder.

For now we will pursue a splint to help prevent night grinding, pain relief (against which even Vicodin seemed not to do much), massage therapy, and possibly physical therapy.

We're getting an assessment this morning at a PT practice that works with people with TMJ disorders, and are looking for counseling resources.  We will pursue any and everything that might offer relief.

Meanwhile I'm encouraging Kelly and staff to get back into the swing of work, exercise, and activity.  People on the Ranch who have struggled with this disorder report that it's a very hard pain to ignore. 

I hate it when we do all we can, and it isn't enough.  I hate for my child to hurt.  I want to slay the dragon and make her happy. 

For now, hugs.

Wednesday, January 9, 2013


Chemo III was yesterday. I felt great, checked out great by the lab and the doc, and reported to Spa Chemo with my friend Maria and settled in.  Fifteen minutes into the Taxol drip I started to go into shock. The team had things under control in seconds and after all was calm, resumed the drip at a lower rate, gave me a mild sedative, and I zonked for the rest of the day. We left the clinic at about 4:30 and I am none the worse for wear.

Meanwhile, my poor daughter Kelly has been going through her own very rough patch, and Mom has been very limited in her ability to help.  Still, it appears Mom's help may be causing more problems than solving them.

Several weeks ago, before Christmas, Kelly developed a mouth ulcer in her right cheek area. We treated it topically and assured her it would go away, but those things are painful and hang around a long time so it was very hard for her.

"When will I be back to normal," she would wail ten times a day and I could only offer vague assurances that it would go away in time.

As the ulcer faded she began to complain about "another one" somewhere in her left cheek area. Nobody could see a thing. We peered with flashlights and probed with fingers. We vainly kept up with salt water rinses and topical pain relievers, though we only guessed at where to swab them.

Kelly's complaints varied between crying, "It hurts," and "It feels different."
I figured out finally that "hurts" meant what acute pain, but different meant "ache." The more I peered into her mouth, the more I began to feel that the pain had something to do with an old crowned tooth that has caused problems before.

Off to the dentist, who said he thought she had pain from clenching her teeth. He did an x-ray and it looked all right. Still, the pain continued, and worsened, and anyway Kelly does not grind her teeth nor clench her jaw that I have seen.

Last Friday I had Nurse Debbie check her out and she said she believed the cheek was swollen, and pointed out that it was flushed and red. She probed the area around the crown and got a big reaction. She thought it might be an abcess. So off we went, along with Sterling for comfort and distraction, to the ER.

The young doctor there concurred with Nurse Debbie after examination, and prescribed an antibiotic and a pain reliever, along with a recommendation to visit the dentist again.

Kelly has now been living with serious pain for weeks. If she could describe the symptoms better we might have caught it early. The mouth ulcer preceding the current problem proved a false trail to follow--for Kelly pain is pain. The pain of a tooth abcess is pain and the pain of a mouth ulcer is pain.

We tried in vain to describe "throb" to her in the hospital. After listening a while she said "yes" but I could tell she had no idea what we were talking about. I don't know how I came to associate "throbbing pain" with the sensation it is. I have no idea how to describe it to my daughter who is in pain and only recognizes the word "hurt."

Another dental appointment this afternoon and then hopefully a referral to the oral surgeon. Kelly's big goal is to be "normal" by cruise time. I hope and pray it is long before that.

There's an old saying that a mother can only be as happy as her unhappiest child, and there's truth in that.

I can and do resolve to find at least one point of joy in every day, regardless of how I feel. I encourage Kelly to do the same, though I think the concept is lost on her. I hope she does find that joy.

I think my presence at the Ranch, weakened though it be, creates confusion in caring for my daughter, at a time when I am less able to fill that roll. After all, I, too, am peering into her mouth and making pronouncements as to what I do or don't see. And I'm the Mom. And I'm a Founder.

Could that make Ranch staff feel complacent that the problem is being addressed? Do they defer to me rather than using their own judgement about when a Rancher needs attention? I know that Jerry's and my presence is a complicating factor, but I don't know exactly why or in what ways.  It's a puzzle.

But lately, I know that my daughter is not a happy girl, and I am not a happy mom.

We'll use this experience to learn.