A Divine Appointment

We were in the shuttle on the way to our appointment with the oncologist. Because we had to wait ten minutes for the hotel shuttle to arrive we were barely going to make it on time. Another couple flagged down the car as we were about to pull away.
“Oh-oh,” I thought. “We are never going to make it.”
“Do you mind getting in the far back?” the driver asked, as Jim got out to offer the lady the middle seat. The man climbed in back with Jim. “We’re going to the pulmonary pavilion at MD Anderson,” the woman said to the driver, as she climbed in next to me.
“Are you going for treatment?” I asked after introducing myself. “This is our first time here,” she explained. “I was diagnosed with lung cancer in December.”
“My husband has lung cancer,” I told her. “We’ve been coming to Houston now for seven years. I know how scary it can be at first, but it gets better.”
She started to cry. “Six weeks before the doctors told me about the lung cancer, my husband was diagnosed with Lou Gehrig Disease. Then the lung cancer. The doctor said it is in both lungs and inoperable. That is why we came here for a second opinion.”
Talk about a double whammy. Two terminal diagnoses within two months. We told them about Jim’s grim prognosis and the miracles we had experienced. They gave us their e-mail and we added them to our f.a.i.t.H. list.
I well remember those first days when we prayed to meet someone who would lift our spirits, listen to our story, or just give us a loving pat on the shoulder. Someone who could say, “You are going to be OK. You’re not alone.”
We watched as they walked into the building, holding hands, hopeful that MD Anderson could give them at least one miracle.

A Modern Miracle

I don’t know what to say. After seven years of ups and downs, seven years of living with cancer and all that goes with it, Jim is cancer free. The giant has left the house.

In October the oncologist told us there was no sign of the cancer in the bone or the malignant pleural effusion that we have been treating since March of ’09. He called it a miracle saying that there was no medical explanation for the absence of the malignancies. But somehow I couldn’t grasp the magnificence of the news. This time it was different. I got it. I want to shout the good news from the rooftops and sing praises to His glory.

Dr. Rios is not quite sure where we will go from here. He has a “gut feeling” that what Jim needs now is rest and a rebuilding of his immune system. There are some new drugs designed for this very purpose that he wants to research. Jim’s body has taken a beating over the years from the aggressive, toxic chemotherapies, the radiotherapies, and the surgeries. He wants us to undergo some testing (can be done in Memphis) to determine the status of the immune system, assess the collateral damage that has been done, and build from there. He will let us know in a few weeks how to proceed. But NO MORE CHEMO, no more planning around treatments and scans—although I’m sure scans will still be part of our lives, I’m not worrying about it tonight.

There is more to the incredible story—people we met today and yesterday just starting down the road we’ve been traveling, the responses of our physicians, people who have read the book and been encouraged. I will have to write another book for those who don’t know how the story ends. Our cup is overflowing and I can’t wait to tell anyone who will listen about the faithful, loving God we serve.

“Now unto him that is able to do exceedingly abundantly above all we ask or think, according to the power that worketh in us,
Unto him be glory in the church by Christ Jesus through all ages, world without end. Amen.”

update on Jim

Just as well I didn't contact everyone sooner because the prayer requests have changed day by day for the past week. As you know Jim had chemo last Thursday. He also had an appointment with his oncologist at West Clinic the same day. Jim was concerned about a new development--a swelling and pain in his neck actually under the jaw. He has suffered with mouth sores since early summer resulting from one or another of the chemo drugs, but this was different. The Dr. told him that it was not a lymph node, which relieved us somewhat because that is always a fear. However the pain continued.

The chemo side-effects were as bad or maybe the worst yet. Certainly the duration was longer. He was in bed from Friday until Tuesday morning. On Tuesday, we made an appointment with our internist to see about the pain in the jaw area. Dr. Castellaw was quite concerned because the bone in the mouth was visible in 2 places. He then sent us to an ENT to determine whether this should be biopsied. In other words, he wanted to be sure it wasn't a metastasis or a new primary cancer.

The ENT said no biopsy necessary, once again relieving our minds, but not much help with the pain. She said the lump in the neck was a salivary gland, gave him a decadron shot which temporarily helped with inflammation, and made the pain more tolerable.

As the shot wore off the pain increased. Today he made an appointment with our trusted prosthodontist who recognized the severity of the problem and sent him immediately to the oral surgeon. By this time Jim was frustrated, frightened and in excruciating pain.

The oral surgeon confirmed that this is osteonecrosis (dead bone essentially) resulting from the Zometa Jim has taken monthly to treat the bone metastasis of the lung cancer. Osteonecrosis is very difficult to treat and there are several options but for us right now the most important consideration is treating the infection which is causing the pain.

Pray for:
1. relief from the pain (he is taking oxycodone).
2. healing from the infection (Augmentin)
3. that he will be able to eat soon
4. that he won't have to be under the care of an infectious disease specialist, hospitalized for IV antibiotics


We are grateful that the x-rays show the damage to in both areas of the jaw is less than expected, although if I understand it correctly, the Zometa has a long half-life ( stays in the system for years), continuing to do its good work and its bad. We are also thankful that his teeth aren't loose yet.

This is a very serious infection, doubly hard to treat because of the other chemotherapy drugs he is taking and his resulting compromised immune system. We will address the other problems later.

Under His wing,

cyndi

MRI experience

MRI
Several months ago when I resolved to open myself to new experiences, I wasn’t thinking of an MRI. When the doctor told me in December that I would need an MRI to determine the extent of injury to my shoulder, I decided to put it off until the New Year.

I have never had an MRI, but I thought I knew what to expect after talking to friends who lived through the procedure. I wasn’t really afraid. I mean if it wasn’t painful I surely could handle it. I’m pretty stoic when it comes to medical procedures. I had a baby during the natural childbirth era sans epidural. I suffered through a colonoscopy in 1978 with no anesthetic. I could surely handle an MRI that involved no pain or discomfort.

The person who called to set up the insurance payment and confirm the time and place asked if I was claustrophobic. “No, no,” I assured her--and myself. I pride myself on having no irrational fears or phobias. Perfect mental health here. Although, I read a true story once about a girl buried alive (ultimately rescued) but the image was seared in my mind and remains my number one least favorite way to die.

I arrived at the office where I had been many times before with my mother and with Jim. Familiar surroundings. Filled out the papers. All no’s. Good so far. The questions most repeated: “Are you claustrophobic?” and “Do you have any foreign material in your body.?” No, no and no.

The technician gets me settled on the comfortable table, gets me the blanket I request. I am ready for a 20 minute nap—toasty and warm—no pain, not even any discomfort.
“Have you ever had an MRI?” she asks handing me earplugs.

I’ve worn ear plugs on numerous occasions, being a former swimmer. But these earplugs were inefficient, not ergonomically designed to fit the human ear canal—at least not mine. I inserted them, head cocked, attempting to create a seal against the noise I had been told to expect. The technician stood patiently beside me while I twisted and turned in vain.

“These aren’t going to work,” I said.”Maybe some cotton?” I really thought a Kleenex wetted with spit and twisted into a funnel shape would be better, but I didn’t want her to think me odd. The cotton didn’t work so I tried the earplugs again and shoved them in the best I could.

“O.K.,” she said. “Here we go.”

The machine was making some noise already—a rhythmic sound not entirely unpleasant which I assumed (correctly) would be louder once I was entombed. Tolerable-I thought.
“Do you want the fan off or on?” the disembodied voice comes from afar.
Oh.Oh. Tough decision. Will I suffocate if it’s off? Or is off preferable to the cool breeze I feel blowing around my face.
“Off,” I answer trying not to think of the buried-alive-girl.
Fan off. Blanket on. Deep breathing. Ready for my nap.
An alarm sounds. Not just an alarm—a fog horn, signaling what? A Malfunction of the machine? A fire in the building? A nuclear emergency?

“Be calm,” I tell myself. “It will stop or someone will come to get you out.” Neither happens.

I wave my hand. “Hello? Is this supposed to be happening? What’s going on?”

The voice again--removed and distant.
“Yes, that’s the sound you’re going to hear.”
No way. “Can I come out for a minute?”

She slides me out or rather the machine spits me out. “I had no idea the sound was going to be that loud and noxious.I think I’ll try ear phones with music.”

“Sorry, we don’t have those here. Do you want to try again? Well have to start over.”

I know what to expect now. Surely I can do this. I am not claustrophobic, I repeat I am not claustrophobic.

The sounds start anew. I am relaxed, going with the flow. Pray, I think. The fog horn stops. Ten second respite. I am assaulted by an army of angry woodpeckers. “Rat-a-tat-tat, Rat-a-tat-tat.”

I forget about praying. I remember that I am easily distracted by noises. Some kind of mental deficiency allowing me to focus on only one thing at a time. I wore earplugs during most of my dormitory years. Having grown up in a very quiet home as an only child I was a light sleeper easily awakened by any noise. A noisy furnace. A dripping faucet. Cicadas on a summer night. I can’t listen to music when I study or TV when I write. Sensory overload. Why did I think I would be able to nap in this thing when I can’t sleep in a room with ticking clock?

The woodpeckers stop. The basketball buzzer starts. Wait there are undertones—sounds like Froggy twanging his magic twanger. Wonder if I have some other kind of phobia, something they should list on the questionare? Maybe I have acousticophobia? No I’m not really afraid of the noises—I just don’t like them.

Peace. Temporarily.

New sound. A single propeller plane preparing for take-off. Distant machine guns accompanied by a tuning fork—yep an A natural. No, I’m sure it’s a B flat. Wonder if I have perfect pitch? No one’s ever noticed, but I’m sure that’s a B flat. What’s that tapping in my ear? Sound like it’s inside not out. Did I forget about some lingering piece of metal imbedded somewhere in my body about to be pulled through the skin by the powerful magnetic field? Maybe mercury fillings or gold caps? I have a lot of them.

Can’t someone improve this machine so that it does its work in silence? I’d like to know the mechanics that cause the sound in magnetic resonance imaging. Resonance. Sound waves. That’s it. Sound waves are bouncing off something giving them a picture of my insides.

The voice comes again. “Almost through. We need to repeat one test. It will only take about four minutes.”

Hope it’s the tuning fork. Not the basketball buzzer.

Snow Days

I love snow-days—a fact which seems paradoxical knowing how rigid and controlling I am. Yet, when Ron Childers breaks into the regular scheduled programming with a weather announcement predicting ice or snow, my heart goes pitter-patter.
Snow days are a phenomenon peculiar to the south. Surprisingly, above the Mason Dixon line, where we had many snowy days, we had very few “snow-days.” Even during the blizzard of ‘79 which dumped several feet of snow on the Midwest, life went on as usual. But in the mid-south, just the threat of icy precipitation creates bedlam. Highway crews are put on alert; grocery stores are emptied of bread, milk, and marshmallows; and children are glued to the TV hopefully waiting for news of school closings. Former Boy Scouts crowd the aisles of Home Depot in search of batteries and generators. Lines form outside Blockbuster. An approaching snow fall engenders more excitement than the arrival of Santa Claus.
When we moved to Memphis, we brought with us the Yankee attitude toward snow and ice. Our cars were filled with antifreeze; our sleds and snow shovels were within easy reach; and everyone in the family was outfitted with snow gear and boots. We didn’t know that southerners prepared in a different way.
On a December day, before a flake had fluttered to the ground, my sixth-grader called from school.
“Mom, can you come and get me?” she said.
“Are you sick?” I asked.
“No, but everyone is gone.”
“Gone where?” (I’m thinking rapture.)
“Gone home. Their moms picked them up because of the snow.”
Before long I was properly indoctrinated in Southern ways. I knew that y’all was part of the southern dialect but I was unprepared for its versatility. When I picked my five-year old up at school I heard her presumably well-educated teacher say, “Is this y’all’s coat?” Wow! I didn’t know the word had a possessive form. Now I know that y’all can be singular, plural, nominative, subjective, possessive, and superlative—as in “all y’yall.” I learned to eat grits, cornbread, and slaw on barbecue. And I was absorbing a new attitude about weather forecasts.
After the first actual snowfall, I understood the southerner’s over-reaction to snow. They lacked the benefit of training and experience. No one could get out of their drives after a snowfall, because no one shoveled snow. While our neighbors sat in their warm houses enjoying the Currier and Ives scene, Jim cleared our driveway. The next morning when the packed snow had turned to ice, Jim drove happily off to work while the neighbors were trapped inside—victims of inadequate weather education.
Of course, we didn’t know that getting out of the driveway was the easy part. The road crews weren’t prepared to clear the side roads, so driving was treacherous. The road conditions were exacerbated by the ineptitude of the drivers who had never learned to navigate snow-packed roads. Those, like us, who ventured out in direct violation of the warnings, took their lives in their hands.
Unaware of the danger, I dared to jump in my car, toddler in the back (car-seat non-existent), and headed out into the melee. As I crept through the intersection at Poplar and Germantown road, I opened my window to get a better view. Mistake. Just as I turned the corner, a city worker threw a shovel full of cinders into my open window interrupting my rousing rendition of “Silver Bells.” I was spitting and sputtering, momentarily blinded, and left picking cinders out of cranial orifices for weeks.
The excitement of the kids was contagious and I celebrated with them when the announcement of school closings included Shelby County. They went to bed with their pajamas inside out—a superstition guaranteed to work, in case their prayers weren’t enough to counteract their dad’s. For some reason, he never got into the snow-day spirit-- much to our consternation. Maybe he was jealous since he was the only one who couldn’t turn off the alarm and crawl back into the warm bed. Wall Street didn’t shut down because of a little snow in cotton country. Jim took the closings as a personal affront, an indication that America was moving toward annihilation as the citizens became slackers and sissies.
We were among the few families that owned a sled and a toboggan. So the neighborhood kids sought out the nearest hill (or slight rise in the ground) and tramped up and down repeatedly until they were sliding on dirt. After a few hours they came in smelling of wet wool mufflers and mittens. I stood ready to fortify them with hot chocolate and warm cookies before they headed out again to take advantage of the short-lived winter playground.
The children are long-gone now but I still thrill to the list of closings and cancellations on the bottom of the TV. I’m not sure why. Maybe it’s because a snow-day brings the kind of imposed cessation of obligation that otherwise comes only with hospitalization—my own. Everything comes to a halt—a cease-fire in the harried battle of life where the commander-in-chief has given us a twenty-four hour reprieve. Shall we watch an old movie, read a good book or my favorite, bake some gooey verboten comfort food?
Pull out the stops. On a snow-day anything goes.

Falling Down on the Job

I have been so wrapped up in my own activities that I have neglected the most important job I have--taking care of my husband. Seven years ago, when I jumped, or more accurately--fell--into that role, I approached it with a vengeance--monitoring, mothering, motivating, and micro-managing every aspect of his care and treatment. Not a morsel of food or medicine entered his mouth that was not researched and ratified by his vigilant sentinel. Like Mighty Manfred, Tom Terrific's ever faithful companion, I never left his side.

But as the years moved on, I resumed some of my normal activities and gradually began to shirk some of my responsibilities. This year I missed some of his chemo treatments (it's so blasted cold in there and they don't have wireless connection) and even missed a few doctor appointments. Ironically, as I became more absorbed in writing about the caregiving experience, I became less involved in the experience I was writing about. Then there was my return to the stage which took me away every night during dinner, leaving him to fend for himself. In my defense, he happily accepted my absence and enjoyed a month long diet of TCBY, Sonic Blasts, and DQ Blizzards. He even learned to give himself his daily injections because I was gone in the evening.

For four months, maybe longer, he has suffered from mouth sores and pain--common side effects of treatment. He asked each of his doctors and his dentist for solutions, but nothing helped. The problem has become increasingly severe. For six weeks he has complained about tooth and jaw pain severe enough to interfere with eating and to make him generally miserable.

Last week it occurred to me that maybe the culprit was Zometa the drug commonly given for bone mets. I reasoned that if Boniva and some of the osteoporosis drugs can cause damage to the jaw, Zometa might work in the same way, resulting in similar damage to the jaw. I even went so far as to suggest he might want to skip his next infusion of Zometa. BUT, I didn't take time to look it up because I was too busy with Christmas preparations.

Today, holiday over, company gone home, and me back at the computer, I checked the side-effects of Zometa. "Some Zometa side effects are potentially serious and should be reported to healthcare provider immediately, such as jaw or tooth problems!

Great. Had I done this weeks ago, I might have spared him needless suffering. I am so angry with myself. I don't know whether the damage can be rectified, but I am returning to my former watch-dog post. Jim may not like it but Brunhilde the nurse is back.

Cancer's Rocky Road

on Sunday morning Jim spoke with his oncologist who told him that the treatments will continue indefinitely. This news wasn't such a surprise to me (the realist) but it was a blow to Jim (the optimist).

Jim had sent an email several days earlier asking for the plan,explaining how difficult the recovery is becoming and hoping that next Monday's chemo would be his last. In fact, I had him temper his remarks slightly because he was adamant that he couldn't take it much longer.

Dr. Rios said that he will need 2 more sessions of the regimen he is on now prior to our Houston trip Feb 1 for scans. THEN it is POSSIBLE that the length of time between chemos will be increased BUT a modified form of the treatment (maintenance) will continue indefinitely.

We are grateful that the drugs have kept the cancer at bay and that he has responded to treatment but after being declared cancer free (with all that implies) further treatment is a bitter pill to swallow (literally).

Living with cancer is better than the alternative but believe me it is not easy. I have spoken with several group members in the past 2 weeks who are similarly discouraged at the prospect of the relentless side-effects that accompany the very treatments which are keeping them alive. Pray for encouragement for all of those traveling this path, and for patience and understanding for their caregivers.

As I pray for those who lost loved ones to cancer last December and those who have lost someone this year, I am so thankful to have Jim here still--even though we have to plan our celebrations around chemo.