Grace in Motion

Amy wasn't feeling well. She'd been sick off and on for weeks, the glands on one side of her neck were swollen, and she had almost daily severe headaches, not to mention that her inhaler (for asthma) was empty and she couldn't afford the appointment to see the doctor for a new prescription, let alone buy the inhaler afterwards.

Amy is our "almost daughter." Warren and I took her in for ten days three years ago when she fled her dad's house during an altercation, and then I tutored her several times a week for the remainder of the year - her senior year - to help her graduate on time (yes, she did). Amy, who will be 21 this spring, has been a part of our lives ever since and she will call me when life gets too overwhelming. So when she called me Monday night, half crying and worrying aloud about her medical problems, I told her she needed to get to Grace Medical Clinic at Andrews House on Wednesday evening.

A long silence ensued. "Are you going to be there?" Amy knows I work at the Andrews House Legal Clinic, so hoped I worked the medical clinic as well. When I told her no, she hemmed and hawed long enough that I said, gently, "come pick me up and I will go with you."

Grace Medical Clinic, which is held weekly, is in its third year of existence. It is entirely volunteer-driven and free to all. I have known about it since its inception, I have heard glowing descriptions of the work the volunteers do, but accompanying Amy was my first opportunity to see it in action.

What a gift.

Despite arriving some 20 minutes before the official check-in time, Amy and I walked into an already full waiting room. She was #13 on the sign-in list. The woman who held the number one slot had been waiting since 2:00.

Ages ranged from toddlers to seniors. Some were Latino; many were white. There was a family in chairs against one wall: father, mother, and three children, the oldest of whom might have been five. At another chair, a toddler played happily on the floor at his mother's feet, trying to stack nesting cups and making the bright loud sounds of a contented baby.

One patient, an older man, was explaining to another client that he was diabetic and experiencing neuropathy in his feet. "When it gets so far up the leg, they'll take my leg off," he added in a matter of fact tone. There was a couple, perhaps in their sixties, cuddled up on the couch. He had a heavily wrapped arm; she held her stomach.

The set-up crew arrived shortly after Amy and I found seats, and I watched the proceedings with fascination. It was what I always imagined watching a MASH unit set up would be. Within 20 minutes, the dining room was divided into a series of curtained examining rooms. Across the hall, others set up prayer rooms. (Grace Medical Clinic is sponsored by an area church, so offers prayer and counseling to any patients who may want it.) Although I could not see it, further down the hall, yet another team was creating an on-site pharmacy.

Amy was nervous. Amy was tense. Amy was anxious about how long it would take. Amy kept thanking me for being there with her. Amy kept talking.

The evening slowed down. Some volunteers brought in food for the patients, knowing that many of them came straight from work, or otherwise had not eaten. Apples, sloppy Joes, pretzels, bottled water - enough to take the edge off of someone's hunger. There was an announcement that the clinic was short one doctor and one nurse tonight, so they could would not see more than 15 patients that night. Little children - and there were lots of them - grew tired and cranky, then grew contented again. People talked in quiet voices. Children flowed from the waiting room to the makeshift play area (also staffed by volunteers) and then back again to their parents.

Amy got called for a weigh-in and triage. She came back with an indecipherable look on her face. When I asked about it, she replied, slowly, "She was really nice. I didn't know girls my age could treat another girl that nicely."

We waited longer. Patients were called into the examining rooms. Amy ate an apple; I ate some pretzels. We both giggled at the little girl who took a sloppy Joe, then returned it a few minutes later, all the edges nibbled off, and carefully placed it back on top of the pile of sandwiches.

Amy was finally called into the examining room. With the seat beside me empty, Peggy, one of the volunteers, sat down and we started chatting. Peggy has worked with the clinic since its inception. She lived in Columbus, and said she never thought of Delaware as needing a clinic, since the county appears to be so affluent, but how she had quickly changed her perception.

I nodded. "We hide our poverty well," I said, explaining about my involvement with our legal clinic. "And if you're from Columbus, the first thing you see coming this direction is south county, which is where most of the money and big houses are."

We compared notes on clinic operations. I admired the hot food and told Peggy how we did baked goods at our legal clinic. She said this was the first night they had hot sandwiches. Peggy talked about the setup and teardown crews and how they rotate volunteers. I talked about our bank of attorney volunteers.

The evening wore on and more patients left. Members of the teardown crew started trickling in; many of the setup and prayer volunteers, including Peggy and her husband, started leaving.

Close to 9:00, Amy finally appeared. She sat down and said, shyly, that she was going to the prayer counseling area and asked me to go with her. Once there, Amy started crying as she talked about the stress in her life, including the loss of her beloved dog. The prayers were Amy-specific: for strength as her father faces foreclosure and the roof over her head becomes uncertain, for guidance as she looks for work, for direction, for healing her grief. Amy continued to wipe away tears.

Our last stop was at the pharmacy, where she was handed a new inhaler, medication for her infection, and replacement prescriptions. Amy just glowed.

"Thank you," she said. "Thank you."

Four hours after we walked in the door, we walked out. On the way to her car, Amy reflected on what she had experienced that night. "I thought they would be rude or make me feel bad for being poor. But they were all so wonderful and caring."

She was quiet for a moment. "I cried in the examining room too," she said. "I never cry. But the nurse who saw me first was so nice and saw me as a person."

For many, a trip to Grace Medical Clinic is a life saving experience. For Amy, it might be a life changing experience. When you grow up in what can at best be called "hard circumstances," and where you are now living life at an even lower level because of the Great Recession, you learn early and quickly that life is hard and people often look right through you because of your poverty. Amy is losing the roof over her head. Her future is so uncertain right now. So she came to Grace Medical Clinic with all her defenses and walls in place, expecting to be treated poorly at worst and brusquely at best. Amy walked out saying "they were so nice, they really cared." She was stunned that the Grace Clinic volunteers treated someone "like her" - someone in need of a helping hand - with dignity and kindness.

The Grace Medical Clinic is a gift in the midst of our community. The volunteers, medical and lay people alike, are passionate about this mission. Their faith shines through in their actions, their smiles, and their gentleness. They are the embodiment of Kahlil Gibran's saying that "work is love made visible."

Our communities are full of patients, clients, customers, and others who gather the courage to step through a door and ask for help. They are the Amys of the world, not sure what reception they will receive when they ask. I am always in awe of the volunteers who open those doors and serve - those who dispense prayers or medications, those who give legal advice, those who cook and serve meals, those who put their beliefs into action - and count myself blessed beyond words to have the chance to work alongside them. They are ordinary people who have stepped forward in extraordinary ways. They are ordinary people who have looked around, said "this (lack of medical care, lack of legal help, hunger, homelessness) is wrong," and then taken action.

Wednesday night I got to witness a miracle firsthand. I saw Grace in motion.

*Photo courtesy of Andrews House, Delaware, Ohio.

Rhapsody of Small Moments

I had been looking forward to today, knowing I would see my oncologist after many months and after the bad experience with one of his colleagues in July. So imagine my shock and dismay when I checked my voicemail yesterday and heard confirmation of an appointment with…

Dr. Bully. Again.

I didn't rant or rave, I didn't call the hospital back claiming this was an outrage. I didn't fire off an angry letter or even post on this blog.

I just started crying.

I am not normally the crying type, at least not for such a small thing as a doctor's appointment. There is a time and place for tears - happy occasions, sad movies, private moments, life milestones. But I have rarely cried over medical matters. My attitude is they are what they are: deal with them and move forward.

But yesterday that attitude was conspicuously absent as I cried and cried. I called Warren and cried on his voicemail. I cried some more when Warren called me back to talk me gently through my options. He would talk, I would respond, and then I would cry again.

I hung up the phone and cried some more.

After about an hour of this, my tears subsided and I started to put together a plan of action. I called Central Scheduling and explained the problem, and got rescheduled to yet another date. The clerk at CS was reassuring and very supportive. I left a couple of phone messages asking for some guidance in navigating the minefield of doctor assignments. I then drove to the hospital to pick up a copy of my last labs, done three weeks ago, so I could see for myself what the key blood marker was doing.

This all took time and energy. Not so much physical energy but emotional energy. It is stunning how draining something like this can be. I spent two hours Sunday turning over my kitchen garden with a shovel and that was nothing compared to how tired I felt by the time I pulled into the parking lot of the hospital.

I was soggy (from the last of the tears), sad, and depleted. I felt bruised and roughed up all over again from July. Yes, I was taking control and yes, I was moving forward, but all the same I felt I was at the bottom of a deep swale.

Then I realized that the music coming out of the radio was George Gershwin's "Rhapsody in Blue."

I love "Rhapsody in Blue." It is a piece that holds many memories for me, including long ago ones with Warren. "Rhapsody" never fails to lift my spirits.

I sat in my car for several minutes, just listening. The music washed over me, soothing the sorest spots in my heart. It uplifted me and gave me enough energy to get out of the car, walk to Medical Records, and pick up my lab results.

[Note for those who are wondering about the Russians in my blood: the marker number rose again, but this time very slightly, which is considered a "float." That's good news.]

Gershwin on the radio was a small moment of great reward in a moment when I needed one most of all.

As my afternoon rolled to an end and evening came on, a whole series of small moments were mine for the savoring. First the Gershwin, then the lab results. Warren coming home and holding me close for a long, quiet moment. A good dinner talking quietly. A phone call from my personal physician, the incredible and wonderful Dr. Pat, which buoyed my spirits and pointed the way to bridging the medical gap between now and when I see my oncologist again. A quick trip to the college library in the warm evening - the buzz of the students on the social floor, the hush on the quiet floor. The pleasure of finding the book I was looking for and more, the more being the young adult novel, Up A Road Slowly.

Up A Road Slowly is a coming-of-age novel about a young girl sent to live with an elderly aunt after her mother's death. It was the Newberry Award Book for 1967, which is when Jean Blakeslee, my 5th grade teacher, put a copy in my hands and said "I think you will enjoy this book, April." She was right.

She still is, 42 years later. I have not read Up A Road Slowly in many years, but I checked it out last night and am halfway through it already. The book has stood the test of time well.

By the time I fell asleep last night, I was tired but no longer drained, reflective but no longer sad. Many small moments had given me great reward throughout the evening and I felt centered again.

The idea of small moments of great reward comes from a note that Warren sent me many months ago about his hopes for our life together. He wrote, in part: I have been through many low points…I believe by now, you well know, I always try to make even the smallest moment of great reward. I have faith in myself and you have shown me the same in you.

Recognizing those small moments when they occur is an act of simple gratitude. It is appreciating that the random music spilling from the radio is "Rhapsody in Blue." It is sharing a laugh with my personal physician, who is also a personal friend, and valuing that she took part of her evening to call and reassure me. It is breathing a quiet "thank you" to a wise teacher of years past (one of many in my life) for placing a good book in my hands. It is savoring the taste of the zucchini bread we had late last night. It is cherishing Warren's smiling face as we sit down for breakfast every day.

I recently had one of my not infrequent conversations with myself, conducted out loud as I drove somewhere. Thinking about the concept of luck, I said, in the stillness of the car, "I don't need to be lucky, I need to be grateful."

The day awaits. I am grateful.

Tiptoeing Through the Medical Bills

Today's mail held two medical bills, the continuing fallout from July's horrific oncology visit with Dr. Bully. After a long meditative moment spent pressing my forehead against a handily nearby doorframe, I picked up the phone to talk with two different billing reps and a financial assistance counselor at Ohio Health. In each case, the folks I dealt with today were far better listeners and far more pleasant than Dr. Bully had been back during our disastrous blind date.

For the record, Dr. Bully's arrogance and refusal to listen to the patient, i.e., me, cost me over $1000 after a hefty discount by the hospital. Had he listened, the bill would have been only a little over $400.

Another way of doing that math is had Dr. Bully not been so determined to shatter my self-confidence, I would have had enough presence of mind to cancel the unnecessary tests and my bills would have come out to only a little over $400. My shortcoming was falling apart when he bullied me throughout the entire appointment, thus costing myself over $1000.

I had coffee with a friend yesterday and we talked briefly about my situation - both my cancer and my lack of insurance. She said, both bluntly and warmly, "I can't imagine what you must go through to deal with cancer and the medical bills."

I appreciated her words tremendously, because often I can't imagine what I go through.

Money and medical care have been on my mind a lot lately. I don't like owing bills. I don't make lots of money either, so I have to pay them off in increments. Recently I have read in several different sources that America is the only industrialized nation where citizens routinely go bankrupt from their medical bills or die unnecessarily from not receiving medical treatment because they cannot afford it.

I've already done the former in recent years. I'm not looking forward to the latter. As it is, I have cut my oncology supervision to the bare bones minimum short of suspending it all together. On a day like today, when my mailbox is abloom with medical bills, I nonetheless wonder whether we can shave that supervision down even a little bit more.

I was supposed to see my oncologist in late October. I rescheduled that appointment to next week, but not because of concern over money. No, I am pleased to the point of smugness to report I rescheduled as a one-woman stand against the medical establishment.

The day before my late October appointment, I got a call confirming my appointment with…Dr. Bully. I almost dropped the phone. I thought I had heard wrong and so asked, "who?" "Dr. Bully." My regular oncologist would not be there and Dr. B. was again filling in for him.

Without even missing a beat, I said, "Oh, no, I won't see him. I refuse to see him. I had a terrible appointment with him and he makes me cry."

The poor woman on the other end of the line quietly said "Oh dear, I'm sorry. Would you like to reschedule?"

That was a no-brainer. I figured I could live with temporary uncertainty over my test results better than a bruised psyche.

Until today, I had shared this story with only four people. All four, starting with Warren, were heartily supportive of my decision. Margo emailed me: Good for you! Exactly the right thing, and I'm glad you didn't decide to straighten your shoulders and be a quote cooperative girl unquote. Many times the thing to do is to not be a cooperative girl.

I see my oncologist next Tuesday. I will be a quote cooperative girl unquote (thank you for that great phrase, Margo!) with Tim because I trust him. He knows my bone marrow, my pocketbook, and, most importantly, my character and my attitude. To top it off, he is an excellent listener. We will talk about my numbers, about what if any options we need to examine within my financial constraints, and about how long until I check in again with him. He will do so without threats, or badgering, or humiliation.

Having a thoughtful and compassionate doctor does not pay my medical bills. But it does allow me to come out of my appointment with my mind and my spirit intact, so that I may better spend my energy taking care of myself and my responsibilities.

I don't know where the national debate over health care will come out. I have stopped following it closely because it is too personal and too upsetting. Instead, I continue to do what so many of us out there do: stay as healthy as possible in as many ways as possible. I also regularly admonish my bone marrow to behave, although I have learned it doesn't take orders well.

And I continue to savor and celebrate each day and the myriad of small moments of great reward that fill my lap. As I finish typing these words, I can smell the homemade chili heating up on the stove. Sam is helping Warren move timpani in a little bit and may stay for supper. Afterwards, Warren and I will share our respective days and our thoughts and our love.

My lap is full to overflowing.

The Numbers Racket

2400.

No, that is not my daily caloric intake. Nor the number of times Warren and I have…well, you know. Nor the balance in my bank account.

2400 is my latest IgG Immunoglobulin count, delivered to me this morning by Dr. Mitchell, who is not my regular oncologist, which made this number all the harder to hear.

2400 is not a number I wanted to see. While it is not a horrific number, it is enough of an "uh oh" number that after the doctor calmed me down, he told me which tests he wanted to order immediately to better interpret that number. He wants to know how much of that number is polyclonal (i.e., okay) and how much of that is monoclonal (i.e., BAD)?

That lead to a discussion of finances and costs and self-paying patients, which is me. In the end we focused on the two tests he insisted on and decided the rest can wait. Even the two most important tests are pricey, so there went another itty bitty piece of my peace of mind. Dr. Mitchell talked about bargaining with the hospital on the charges, and while I can appreciate the wisdom of that strategy, I finally looked at him and said "I understand what you are telling me. But I am tired and this takes so much out of me."

(And I was in tears too, which is never a position of strength for me.)

Now there was lots of good news in today's lab results. My IgA and IgM numbers are rock solid, as are my white and red cell counts. If the myeloma is reactivating at a furious rate, those numbers start to get shaky quickly. Those numbers, my level of physical activity, and the fact that my weight is not plummeting, are all positive signs.

All the same, 2400 hit me hard. That's my highest IgG count since February, 2005. Back then, Tim (my regular oncologist), Pat (my wonderful personal physician) and I were celebrating a number in the low 2000s, because the previous count had been 6100.

If Tim had been there today, we would not have been celebrating.

Tim Moore and I go back to November, 2004, when he confirmed what Pat had already discovered: I had multiple myeloma. I can still remember that initial consultation. After discussing what I already knew about my blood work, Tim said that while there was a slim chance otherwise, the blood work was so devastating that he was certain it was multiple myeloma. Despite knowing that was what he was probably going to say, I burst into tears and said an obscenity (not one of the nice ones), then immediately apologized because I didn't know him at all and didn't know if I could say that in front of him.

I could. We bonded immediately and that bond has never been broken.

As the nurses scheduled my tests and next appointment, they kept handing me tissues. I have been with many of them for almost five years now and that made it easier to let my guard down. It also made for a wad of shredded, wet tissues in my pocket by the time they got me scheduled.

Warren was with me today, as he usually is on my oncology days. He walked me to the laboratory; he had appointments he had to keep and I was going to be awhile longer at the hospital. As he kissed me goodbye and said he loved me, his voice broke. There were tears in his beautiful blue eyes.

I hate making my husband cry.

Back in November of 2005, Tim and I discovered that the transplants I had just undergone did not "cure" me. My latest biopsy and blood tests indicated that there was still something going on. Tim said it could be a benign abnormality that I will live with always. Or it could turn back into myeloma again. He then gave me an analogy that has stuck with me ever since.

"April, imagine your blood cells are Russians and we have a picture of them all standing there in Red Square. We know everyone in the picture is Russian. But we can't tell by looking at the photo if they are KGB agents or not."

I am waiting to see if they are KGB agents.

Life goes on though and I am more than ready to move on with my day. Early on after I moved to Cancerland, I decided I could wring my hands and weep all day every day or I could pick up the pieces and make the most of what I had. I have never regretted choosing the latter path.

As I once wrote my friend Larry, who also shares this disease, "screw myeloma." And that's how I feel right now. Screw myeloma. It's today I need to live.