Loose Strife

Laura was finally discharged after 9 last night (Wednesday) and we decided to spend the night in Boston. This morning Laura was feeling really lousy — probably because she was off her IV fluids and hadn’t had pain medicine for over 12 hours. I brought up the subject of intrathecal again. I felt there was an opportunity to do something today, but she said she just wanted to go home. I didn’t feel like it was my place to push. These are complicated and personal decisions.
But as Laura slept more this morning, I talked with my friend and host Irene about her situation. As Irene made Laura some homemade chicken soup, we got ourselves worked up about Laura’s situation and I felt a greater urgency that Laura should act. It’s a long shot, but why not try? It’s low risk. Why wait? Things could get worse. Why isn’t she being reasonable? Why won’t her neuro-oncologist tell her to do it? Sure, Laura should make her own decisions, but what if she’s not thinking straight?
I woke Laura up for some food. She took 2 sips of soup and a morphine pill and threw up. Back to bed.
A few hours later I woke her again. I really think you should try the intrathecal chemotherapy. Today. We’re still in Boston. Your doctor can see you this afternoon. It’s a simple outpatient procedure. We’d come back every two weeks. If it makes you feel worse, you don’t have to do it again. It might make you feel better right away. Right now you have no evidence in your scans of bulky tumor, but your cancer cell count is sky high. Your doctor said that intrathecal chemo isn’t known to work on bulky tumor, but intrathecal is frequently discussed as cleaning out the cancer cells from the spinal fluid. Don’t wait until things get worse when visible tumors might form, it would be too late. It’s a long shot, but it might work. You should try it.
OK, she said.
I wasn’t sure if I did the right thing. It felt like a hollow victory. And that turned out to be more true than I could have known at the time.
By one o’clock Laura successfully had some orange juice, ice cream and pain meds, and she was feeling a little better. Her doctor told us to arrive at 2 and he would try to squeeze us in as soon as he could. We waited (Laura slept sitting up) for 2 1/2 hours in the Dana-Farber clinic waiting room. Finally we saw her neuro-oncologist.
Before we continued, I wanted to make sure he was fully behind it. Starting with our first meeting with him in January after Laura was diagnosed, he had never pushed for it, but I assumed that that was partly because he was being supportive — not pushing for something with a low success rate that Laura and I didn’t like at the time. So now I wanted to hear him support our change of heart.
“This seems like a good idea, right? It’s low risk. She’s experiencing all of the possible side effects already. She already has the hardware in her head to do the treatment.”
“It’s reasonable,” he said.
“Why not a good choice?” I demanded.
He didn’t budge. “I’ve said this before. I don’t want to get your hopes up. I’ll be honest with you, Laura has maybe a 5-15% chance of response. It’s a reasonable choice.”
I laid out the “no bulky tumor / high cancer cell count” argument.
“I understand your logic. It’s a reasonable theory.”
I started to feel unsure again. Laura sat and listened with her eyes closed. I wished she would jump into the discussion. Laura hadn’t been eager, but I persuaded her. Her doctor doesn’t seem eager either, but I shouldn’t be trying to persuade him.
I took a different approach. “What’s your experience? When will she know if it’s working? In a day? A week? Before a second treatment?”
“I would recommend that we at least try it for a month. Two treatments. But I have to be honest with you, I don’t expect her symptoms to get better. She could be lucky.” He paused to think about other cases. “I can’t think of any cases that I have had where the patient was exhibiting symptoms and the symptoms got better.”
“So when is it a good idea?”
He said that patients that are known to have leptomeningeal disease but are asymptomatic can benefit because the chemo can delay onset of problems.
“But nothing shows up on Laura’s scans. How can you explain your opinion?”
“Well, because Laura is exhibiting symptoms like spontaneous vomiting, it’s likely that tiny tumor masses have already formed that can’t be seen on the scans.” That’s what is probably different between her and an asymptomatic patient.
I felt deflated. Laura seemed unmoved by the whole discussion. She had already made her decision and wasn’t interested in dealing with conflicting positions.
He printed out a consent form and Laura signed. He examined the back of Laura’s head where the shunt has a reservoir for access to the spinal fluid. And then the whole visit became suddenly moot.
Laura’s shunt was the wrong kind. If he injected the chemo, it would just immediately drain out of the shunt and into her gut. Her doctor left to confer with his colleagues just to make sure. I was feeling frustrated. Before Laura had the shunt surgery, I talked on the phone with the neurosurgeon to make sure that Laura could get intrathecal chemo in the future, if she wanted it. I knew then that the shunt was different than the type that the neuro-oncologists usually request at Dana-Farber, but I thought that her neurosurgeon had assured me that there would be no problems.
(Now this gets a little complicated. Most cancer patients get an “omaya reservoir” for intrathecal treatment. An omaya is basically a tube that connects to the spinal fluid and is accessible with a needle at the top of the skull. When patients with an omaya receive intrathecal chemo, the chemical is injected and circulates through the cerebral spinal fluid system for days until it is fully absorbed. But if a patient has a shunt, which drains spinal fluid, there is the problem that the chemo just drains out and doesn’t circulate. To get around this problem, the oncologists like to use a special kind of shunt that has, in addition to a valve that controls the flow rate, an on/off switch — literally 2 buttons under the skin on the skull that allow the shunt to be turned off completely so no fluid escapes the CSF space. The doctor will turn off the shunt, inject the chemo, and tell the patient to turn the shunt back on in, say, 24 hours — maybe more or less depending on how bad the hydrocephalus is. It’s a sub-optimal way to administer the drug because it will not stay in the system once the shunt is re-opened. So importantly, even if Laura had this on/off shunt, she would still be getting a sub-optimal treatment, which suggests that response rate for patients with such shunts is even lower than for those with omayas. Now Laura could obtain essentially the same effect, but not in the oncology clinic. She has a standard programmable shunt and she could go to her neurosurgeon’s office, have them “dial it” all the way up so that it was essentially off, then she could go elsewhere to have the injection, and then go back in about a day and have the neurosurgeon dial it back to the correct setting. Repeat every two weeks.)
To do intrathecal with Laura’s shunt would be a big expense and a lot of time for a sub-optimal application of a chemotherapy treatment that is highly unlikely to have response to begin with. Intrathecal seems to be off the table.
At this point in the meeting, Laura says that she just wants to stop throwing up. The doctor recommends that she retry the gamut of anti-nausea/anti-vomit drugs. He gives her a prescription for an anti-psychotic that seems to keep some people from vomiting. And there’s a long list of conventional drugs that she can try again. Her doctor also mentioned marijuana, but Laura has never smoked anything and thought it would be too awkward, difficult, and unpleasant. Baking it into food seems a little dicey if she’s likely to throw up. I think it’s still something to consider. There’s also the synthetic prescription drug marinol. Laura tried that last year with no response, but her situation is apparently different now — it’s not the increased pressure, it’s probably the cancer cells acting more directly on her brain — so maybe the old drugs will work this time.
She’s happy to finally be back home. The kids were eager to see her and she was eager to read some bedtime stories again. After almost a week in Boston I don’t think she’s any better — maybe worse. After the fact, Laura and I have always felt good about hospital stays because she left feeling better with a comprehensive plan for dealing with a multitude of problems. This time it’s been more of a letdown, but at least we can say that a lot of avenues have been explored… and eliminated.

I’m at the hospital to pick up Laura. Waiting for the discharge orders. Her neuro-onc felt that there was nothing more that could be offered in the hospital now.
This is not really good news. Her symptoms are not under control – the main problem being the vomiting. But anti-nausea drugs don’t seem to work because Laura doesn’t really get nauseated, so there’s not many options.
What was supposed to happen at the hospital over the next couple days was that a special “intensive palliative care” team was going to work on managing her symptoms, tweaking treatments, and monitoring her response. But this team evaluated Laura’s case today and had no special insights. The doctors decided that she might as well be home.
This is a big disappointment.
Yesterday we talked with her neuro-onc about her symptom management. I asked what could be done to manage her symptoms that wouldn’t keep her asleep. And he admitted that most of the palliative drugs were sedative. That’s partly why he was hoping that the palliative specialists would have some good ideas.
The only new idea is to try a steroid because the vomiting might be due to some swelling in her brain. And that’s an upper. But it has its own problems.
I want Laura to try the intrathecal. It could have immediate relief. But Laura doesn’t want to. She says she’s afraid; that it sounds like a last resort. I told her that it is and I thought it was worth a try.
We’re going to spend the night in Boston and she could get it tomorrow if she changes her mind, but I can’t push her. There are no right answers. .

Laura has been in the hospital now for over three days and is bored, so call her at 617-732-4366. She’ll still be there for at least another two days.
The cause of her troubles is still uncertain, a treatment plan hasn’t been settled, and her symptoms aren’t adequately controlled. Not for lack of trying.
Laura has had a head and spine MRI, CT scan, a shunt series, a shunt tap, a spinal tap, and an analysis of her spinal fluid. The results are a little contradictory and not very encouraging. Surprisingly, as I previously mentioned, the visual evidence in her brain MRI of cancer in her spinal fluid has decreased, but her ventricles, which hold much of the fluid are slightly bigger. Her spine MRI looks better according to one doctor and the same according to another. Regardless, comparing the head and spine scans to those taken in May suggest that there’s some evidence of increased pressure, but no visual indication that the cancer cells are worsening or affecting specific parts of the nervous system. The apparent increased pressure suggests that her shunt is not working perfectly, but the pressure measured from both her head and spine are normal and all the indication are that the shunt is functioning properly.
The hospital neurology team, her neuro-oncologist, and her neurosurgeon all agreed this afternoon to “dial down” her shunt to reduce the pressure and see if that helps. But nobody is optimistic because Laura didn’t experience any relief when she had fluid removed during the taps, which should have the same effect in the short term.
So, there’s some evidence for and against inter-cranial pressure. I’m hoping that she’ll respond well to the shunt adjustment over the next day or so, since it’s the only specific single point of failure and it can easily be fixed.
The pathology report on her spinal fluid unfortunately found very high levels of breast cancer cells. It seems to imply that her current chemo is probably not improving her CSF mets. (It might be keeping cancer stable in the rest of her body.) Her neuro-oncologist said that sometimes patients have symptoms like Laura’s with no specific tumor sites or visual evidence of disease.
In the mean time, Laura hasn’t been able to keep very much down, so she continues to take in only a few calories. Unfortunately, there doesn’t seem to be much that can be done to treat that specific problem. All the standard medicines treat nausea, but Laura doesn’t really get nauseated, she just throws up. (This turns out to be a classic indication that the problem is neurological. Furthermore, the fact that she has no abdominal pain or other related symptoms and that nothing is found on her PET/CT scan pretty much rules out a gastrointestinal problem.) Also, we learned that her neck and back pain are consistent with complications of CSF mets and can be unrelated to Laura’s mets to her spine and other bones. This is consistent with her PET/CT scan that showed that the bone tumors were quiescent — a finding that I previously found baffling.
So, it seems that the most likely explanation is that the CSF mets are causing her troubles through non-specific infection of the nervous system. However, her neuro-oncologist could not offer a good physiological explanation for what might be going on and instead suggested that Laura may be declining due to “cancer load” — which is just general oncology talk for feeling like crap due to all the cancer cells in your body.
Tomorrow I’ll write about what Laura might do about all this. I’m too tired to write much more right now. But I will quickly say that I drove the girls and my parents to Boston on Monday, we spent the night at an incredibly generous and hospitable friend’s house, and we took in the New England Aquarium today. Of course we visited Laura several times. We had a pretty good time, all things considered.
All for now. Good night.

This morning Laura agreed to get her shunt checked. I called the neurosurgeon to ask him to grease the wheels on arrival. Instead, we talked at length on the phone during which he argued that a spinal tap wouldn’t be informative and that his office could do a different procedure (called a shunt series) after all other possibilities were explored. He said the shunt was working ok, noting that Laura’s symptoms are different than before.
The truth is that her symptoms seem less severe, but similar in many respects to when she had hydrocephalus before the shunt. I got in touch with the on-call neuro-oncologist at Dana Farber and he said that Laura should get a workup right away and eliminate hydrocephalus as a cause.
The surgeon says his shunt is working and that doctors are always blaming the shunt. The neuro-onc says that he sees shunts fail for a variety of reasons all the time. Bring her in to Brigham & Womens and they can do a shunt series right away.
So that’s what we’re doing now. Long drive. As usual, she was admitted right away into the ED. Laura’s already upset with all the failed jabs to find a vein. “Doesn’t bode well,” she said.
We’ll probably be here for a while. I might post updates in the comments. No promises, though. We don’t expect anything earth shattering. Just lots of tests. .

This week has been tough for Laura. She hasn’t had a real meal all week and is continuing to slowly lose weight. Headaches are more frequent. Her back and neck pain has worsened, but it’s not clear why; her scans showed no worsening in her bone mets, so maybe it’s from spending so much time in bed. While none of her symptoms is very acute, it’s all ominous and worrisome and depressing.
I talked with her neuro-oncologist at Dana Farber on the phone on Thursday. There are two probable causes: either progression of the CSF mets or a failure in the shunt. (A third unstated and unlikely possibility is drug interactions.) Since she just met with her neurosurgeon on Tuesday and he looked at the brain MRI, it seems unlikely to be a shunt problem. But her symptoms are similar to her early stage hydrocephalus last year, which the shunt ultimately eliminated. Her neuro-onc recommended that Laura get another spinal tap to check her CSF pressure to definitively eliminate the shunt as a cause. I checked back with her neurosurgeon on this and he agreed.
But Laura doesn’t want to go the emergency department to get it done.
We had a long meeting with her general oncologist yesterday (Friday). It was one of those very difficult and emotional “there are no right answers” sort of meetings. Laura wasn’t talking much; just sat with her eyes closed. I went through all the details of the last week with her doctor — her symptoms and the responses from her eye doctor, neurosurgeon, and neuro-oncologist. I raised some options that Laura and I had discussed about taking a “chemo break” and reconsidering intrathecal chemotherapy.
Her doctor had me leave for a while so she could talk with Laura to try to determine what she wanted to do. But that was inconclusive. When her doctor came out to the waiting room to fetch me, she said, “I don’t know. Laura doesn’t know.” Laura was too exhausted and confused. Her doctor left us alone to talk some more.
The way her doctor framed it, Laura has three options: go to Dana-Farber, get a spinal tap, and begin intrathecal chemo; continue with the current treatment; or switch to a palliative care mode. Laura’s organs aren’t failing, she’s mobile, and her problems aren’t severe, just persistent and draining. So it seems a little odd to be making a major treatment decision, but if the forecast looks grim then it makes sense to set the right course sooner than later.
Laura said she didn’t want to go to Boston. To her it represented the kind of treatment that she didn’t want: in the hospital far away from home and kids. The truth is that it would probably just be a day or two away from home, but Laura said that she wasn’t ready to try intrathecal chemotherapy.
I’ve described intrathecal chemo before. It’s chemotherapy injected directly into her central nervous system. It’s a lousy option because the chance of response to treatment is in the 10-18% range, the chance of bad side effects of serious headaches and vomiting for days is significant, and the increased survival time for responders is typically only weeks. Nobody has pushed it on her, but it’s a common treatment option among patients with cancer in their CSF. To me, it seems a little more acceptable than I thought in the past. Laura’s CSF cancer seems to progress slowly and she responded very well to radiation, suggesting that she might have a prolonged response to such chemo, too. If she experienced bad side effects, then her neuro-oncologist said that she could simply stop further treatments. The treatments themselves would be one-day trips to Boston every couple weeks. Since she already has the shunt, no surgery is required to begin the treatment, so it seems like a low risk shot in the dark.
But Laura’s not ready, yet. She wants to take a drug break (as much as possible) for a few weeks to see if she feels any better off of chemo and other drugs. Her oncologist isn’t keen on the idea, but doesn’t object. There’s the unlikely possibility that her current treatment is a flood gate and as a doctor she feels an obligation to treat. But Laura has had excellent quality of life while off of chemo in the past and there’s a sense that she would gain some peace of mind knowing that the drugs themselves aren’t causing her troubles. It seemed important to emphasize to her oncologist that Laura wasn’t giving up and was prepared to make new treatment decisions in several weeks depending on her condition.
But in the meantime, to eliminate the possibility of a mechanical failure, Laura wanted to get her shunt checked with a spinal tap. So her oncologist told her to go right away to the ED in Springfield. But Laura balked. She said she just wanted to rest and not get stuck in the hospital.
And that’s where we’re at this morning. Maybe I can convince her to go today.

Just a quick note to say that Laura’s visit with her neurosurgeon today was significant only in that he agreed with the radiologist that there was no significant observable problems in her brain MRI. He agreed that all the symptoms together — vision loss, vomiting, headaches, mild dizziness, neck pain — are worrisome and probably indicative of advancing CSF mets, but he hoped that that wasn’t the case. As I’ve explained before, cancer cells can either group together into “bulky tumor”, which was the case when she had tumor nodules at the base of her spine, or they can be diffuse, and in the diffuse case there is not usually any observable irregularities in imagery.
The surgeon referred us to a neurologist, who might have some knowledge about managing her symptoms. But we won’t see that doctor for almost three weeks (and that’s after I played the cancer card, again).
Yesterday Laura went to her eye doctor and he said that there was nothing abnormal in her eyes. Her distance vision is actually better and her near vision has worsened. This is apparently common as you get older, but uncommon for it to happen suddenly. So Laura got another set of lenses today and is hoping for the best.
Everyone agrees that the problems could be drug side effects, but it’s probably unlikely. I’ll call her neuro-oncologist tomorrow to discuss her case.

To mi familia grande, our phone is down after the recent storms and isn’t scheduled for repair until Wednesday some time. We don’t have cell phone service here and that satellite internet thingy has been pretty flaky during this last week. And all the storms don’t help. So… to reach us through Wednesday, your best hope is email. If it’s a real emergency, well, call the Ashfield police. You’ll make it into the patrol log!

Laura’s not feeling very well — not eating much and tired. She has a hard time eating because she’s afraid she’ll get sick — which she does about once a day. So mostly Ensure milkshakes. You’ve heard about this rigamaroll before. We’re both worried.
Laura had a brain MRI on Thursday that was negative. Her shunt was adjusted Friday morning, but it doesn’t seem to have reduced any symptoms. She sees her eye doctor on Monday morning and then her neurosurgeon on Tuesday. She’s going to drop some non-essential meds starting tomorrow. The best case scenario is that it’s a drug complication. Most logical cancer-based guess is that the CSF mets are gunking up her brain again causing headaches, vomiting, and vision loss. As we learned the last time around, changes in the meninges is difficult to observe in imagery, so the negative MRI is consistent with such a possibility. This would suck.

Laura got the results of her latest PET/CT body scan today. There were no new tumor sites and her existing bone mets were metabolically “quiescent”. We were surprised.
The other day Laura asked me where her liver was as she held her mid-section and got weepy. The liver is a common site for metastases in breast cancer and Laura worried that the strange rumbling feeling might be her liver. It wasn’t.
She’s been having troubles keeping food down, she’s lost five or six pounds in the last month, she’s quite fatigued, and headaches — “normal” ones, not the super-migraine kind she had before — are now common. Her sleep pattern is out of whack: she sleeps from about midnight until almost noon, and sleeps more in the afternoon when she can. Part of that I recognize as depression related.
Her vision has deteriorated so much in the last two weeks that her new lenses don’t work anymore. This little part of the story alone is ironic. About two months ago Laura was discharged from the palliative care team of the visiting nurse association. It became clear that Laura was not dying. Instead, she surprised everyone with an almost complete recovery in her walking. But before the turnaround was obvious, the head nurse signed a form for Laura to get a handicap tag for the car. Because of a box that was checked on the form, Laura received a notice at the beginning of June for her to forfeit her license. She didn’t give it up and instead has been driving herself around western Massachusetts to shop and go to appointments and so on. I was thrilled for her and happy for myself that logistics would be simpler. Three weeks ago we even tried to get a doctor to sign a letter that she was capable of driving, so she wouldn’t have the forfeiture demand hanging over her. The letter wasn’t signed because the doctor wasn’t fully familiar with Laura’s case and told her to wait until her regular oncologist returned from vacation. And now, in the mean time, Laura’s vision has worsened so that she really shouldn’t be driving until her glasses are fixed. But her doctor, now back from vacation, wants to wait to figure out what’s causing the change in vision.
So because of all these problems we’re not overjoyed with the scan results as we might normally be. Instead, Laura will be getting a brain MRI in the next couple days. (The MRI is a hassle just by itself. Because Laura has a programmable shunt in her brain, the magnetic fields from an MRI can de-program it. As a result, she has to be checked by her neurosurgeon after the scan to reset the device. The MRI facility at our nearby hospital in Northampton demands that her shunt be checked within one hour of the scan, but they only have open slots for a scan at night until next week. The main outpatient MRI facility in Springfield has a new policy where they flat out refuse to scan her. The MRI at the hospital in Springfield where her neurosurgeon is located was flooded and is closed for weeks. It’s still to be resolved.)
We’re getting nervous again. I keep wondering whether the symptoms are all just drug complications. In February she wasn’t taking any drugs except an anti-depressant. And now, among the daily, weekly, semi-monthly and monthly pills, shots, and IVs, she takes ten drugs. White Rabbit was written for her. Maybe she needs detox.
The problems are very unlikely to be all drug complications, but if the brain MRI is negative, then she will probably experiment with removing individual drugs.
All that said, she’s also doing really well — that is, she’s much better than was expected. So I shouldn’t complain, but I will anyway.

I am really really pleased to say that Laura is in excellent shape relative to what we were expecting. Her mobility has continued to improve, which has been a big surprise. Her walking is almost back to normal. She now walks up the stairs normally, alternating each leg, she hops out of chairs, the car, or bed with ease, and she walks around the house and garden without a cane and hardly a worry.
Her back and leg pain are under control with morphine and she has no chronic pain problems. Even her tingling, numb hand is better.
I admit I’m selfishly pleased that she can put the kids to bed on her own or lift Naomi in her arms. She hasn’t done these sorts of things for the better part of a year!
She is tired. Her eating and sleeping are out of whack. And some days she’ll sleep for 18 or more hours. Laura is borderline anemic and the oncologist suspects that the chemotherapy is the cause of the low blood counts and her fatigue. So Laura is on a reduced chemotherapy dosage this week and she also began a new weekly injection called Procrit to stimulate red blood cell production.
I think she is also losing some short term memory. Dates, discussions, plans, and prescriptions are the sorts of things she forgets.
But this is all manageable. And she’s in far better shape than her doctors would have predicted. I often think about why. Could the Xeloda and Avastin be working to not just keep her cancer from spreading in her nervous system, but reducing the cancer load throughout her body? Did the radiation kill the tumor in her spine and her improvement over the last month is just natural healing? Is her particular cancer simply slow? There’s no telling.
Whatever the reason, it’s very hard for me to imagine Laura declining again, which is to say that I’m frightened that it will happen despite this big bounce. I’m thinking of the future now in terms of six or twelve months away, but I know that doing so is naive. Still, had we but world enough and time, what then?

We’ve been back for over a week now and I’m finally getting around to posting a more detailed trip report. You can find photos from our trip at photos.dizz.org/200806AR. 
We arrived late on Thursday into Little Rock and crashed at Jerry and Karen’s house, where they had a pig’s mess of roasted pig. It was the first of many barbeque meals and I wasn’t complaining. Jerry Ray is Laura’s oldest cousin, a liquor distributor with a taste for fine wine, good food, and travel. We’ve met up with him a couple times in California while he was on expeditions to the Napa area in search of good wine. But for this trip, we missed Jerry because we were a day late and he was away. The next morning the girls splashed in the pool for a little while, Jerry and Karen’s son James stopped by, and then we headed west on Rt 40 for the Ozarks.  
About three hours later we arrived at Ronda and Troy’s house. Ronda is one of Laura’s seven Arkansas aunts. Troy is a pastor for a Missionary Baptist church in Ozark — the third church he’s literally built in the area. Their children, Ada and Kirby, both live nearby and their kids are close in age to Lily and Naomi. So our girls had no trouble making quick friends — swinging, wading, riding an ATV.  And we all enjoyed more delicious barbeque. Yummy. I chatted with Kirby for a while. He’s a real cowboy — running a beef cattle ranch down the road a bit. And he also runs a “cowboy church”.
I took a drive around the area and saw a modest winery and vineyard operation. What amounts to a large scale wine operation in Arkansas is not much to see, especially compared to the huge farms in the Delta that we’d be seeing later. Back at Ronda’s we kept eating more food until I was just about waddling. Natalie cajoled Naomi to sing Do Re Me a half dozen more times. Laura, I, and the kids spent the night at Ada’s house nearby where she’s in the middle of an impressive renovation.
The next day, Saturday, we were in the car heading back across the state to the southeastern region of the Mississippi Delta — Holly Grove — where Laura’s father grew up and most of her aunts and uncles live (eleven brothers and sisters; nine in Arkansas; eight near Holly Grove). Holly Grove seems to me like the quintessential old country south. The region, northwest of Helena, is flat as a pancake — an enormous, rich alluvial plain. After leaving the highway we drove along straight roads with fields of corn, rice, or winter wheat stretching from the road into the distance. “Town” is a 3 block zig-zag and then it’s gone again. There’s an auto parts store, a liquor store, dozens of mostly rundown homes, and two churches — the methodist and presbyterian sitting on opposite corners of one of the crossroads in town. On the opposite diagonal corners are two homes: one is Laura’s uncle Dickie and wife Ginny, on the other are her aunts Norma Ann and Arlene.  
We stopped at her aunts’ house first and had some iced tea — always sweetened with Fasweet.  I got talking to her aunts about what it felt like to witness the gradual decline of their town. They told me that in the 40s and 50s there was hardly room on the sidewalk on a Friday or Saturday night. There were multiple grocery stores, restaurants, a cinema, etc. But as automobiles became affordable even to the poor, small towns like Holly Grove lost out to bigger towns that were now not so far away, like Brinkley or Helena.
But in addition to the availability of fast transportation, I’m pretty sure that the town has shrunk so much because the population has shrunk. In the mid-1900s Laura’s grandfather managed a sharecropper farm outside of Holly Grove with, I think, a thousand or more acres divided into small parcels among hundreds of farmers. Every year they’d show up to pick up their mules to farm their 40 acres. The physical labor required to farm was immense until tractors and large-scale automation were introduced. Now one person can farm several thousand acres with some extra hands for harvesting, contractors for spraying, etc.
So farmland in Arkansas looks nothing like New England. There are no quaint old sidehill barns among rolling hayfields. Instead, large metal sheds are found infrequently along the roads. They protect huge tractors and equipment. And these machines work on sprawling, flat acreages — much of it rented from distant landowners. This is the real farming of most of America. Massive, efficient, and industrialized. And, ironically, almost none of it ends up directly on our dinner plate. It’s not monoculture exactly because fields are rotated among soybean, rice, wheat, corn, and cotton. But for the most part, these crops are harvested in massive amounts and trucked to grain elevators in nearby towns where they are ultimately incorporated into processed food or exported.
The afternoon we arrived we headed over to Laura’s aunt Ozella and uncle Stanley’s place in Ragtown — about 10 miles east of Holly Grove. Ozella is a bright smiling, tiny woman who seems to care more than she could contain. She’s always thinking about us, checking up on the computer, calling us up to make sure we got home OK. She beams when we arrive and fixes me a screwdriver.
The winter wheat harvest has just begun and their son Calvin farms over a thousand acres. Calvin’s brother Stanley Karel, was helping with the harvest, as was Laura’s uncle Billy. While everyone visited (and Naomi continued to sing show tunes to anyone who would listen), I drove out to meet Calvin a couple miles away where he and Billy were harvesting wheat. The combine was a huge machine, with a small air-conditioned cab at the top. (I soon realized that the dust was so severe that it would be almost impossible to drive without a closed cab.) A 25 foot wide spinning cutter bar gobbled up the grass, sucked it into its belly, separated the seed, spit out the chaff, and tossed the seed into a hopper pulled by Billy in a tractor that drove beside the combine.
It was fun, but the whole scope of it all seems like risky business. I would guess that the weather or some input price could fluctuate just a little and throw the whole financial picture into the red when you’re dealing with such a big operation. What happens when you take a futures contract for wheat and then the price of fuel goes up 50%? Or your work shed blows down in tornado winds, like it did for Calvin?
Back at Ozella and Stanley’s we had another classic family feast that included more barbeque (no regrets!) and rich desserts. Visiting continued late into the night. The girls were so tired that they were starting to hysterically spin like tops. I took them back to our “base camp” at Janice and Randy’s place, a few miles south of Holly Grove. They were asleep in the car before I was a mile down the road.
Janice is one of Laura’s cousins, Bobbie’s daughter, and she and Randy have a really nice place on the banks of Maddox Bay, but they weren’t there. Randy is a crop duster and this time of year is so busy that they often live at the airport.  We stopped by the airport to visit and check in with Janice. She’s been in terrible back pain for many months and we worry about her a lot. Everyone keeps praying that she gets some relief…
And so we were grateful but felt guilty for taking over their house — considering that Janice wasn’t well. Still, everyone insisted that we do so, which is predictable southern hospitality, but also genuine, it seems, and we could hardly refuse.
Maddox Bay isn’t a conventional bay. It’s actually a long, sinewy branch off the White River in the White River National Wildlife Refuge — a swampy mix of bottomland and bayous. I borrowed a fishing boat with an outboard motor and took the girls for a ride. Lily insisted that we turn back as soon as she lost sight of civilization, but Naomi and I then struck out on our own and had fun watching the turtles sun themselves and spotting snakes wriggle across the water. We turned off the motor and lazily floated among the flooded low lands. The boat ride would have been perfect if the fish were biting, but a recent high water flooding seems to have kept the fish away according to Laura’s uncle Neil. So instead, we had other fishing plans for another day.
On Sunday afternoon there was a lunch at the Presbyterian church hall in Holly Grove just for Laura. Pretty much all the rest of the Colemans that we hadn’t yet seen were at the church for another big buffet. Not everyone actually lives around Holly Grove. Most of Laura’s aunts and uncles do, but the cousins have all moved elsewhere: Little Rock, Jonesboro, etc. But everyone came back to Holly Grove — even some distant cousins and old Coleman family friends.
Laura cried a lot during the goodbyes. She told me that she kept thinking that each goodbye was the last. We took lots of pictures, including a big group photo of 44 kin.
Laura often didn’t wear a hat that day and during the rest of our visit. Her hair is growing back now in a very odd way that’s sort of male-pattern-baldness meets hari krishna. We call it her inverse mohawk. And in the back is a strange square of hair with straight edges and sharp corners. (Her oncologist has never seen such a growth pattern.) But she’s comfortable with the crazy look. It’s easier to just accept the weirdness of it all than to try to make herself look different. At home she has a drawer full of caps, hats, head scarves, and a wig — but she never found the lid that was right for her and now that it’s warm, she wears a baseball cap mostly just to shade the sun.
Before we left the Sunday food extravaganza, Naomi and Lily found the dress-up clothes — this time across the street at Dickie and Ginny’s where there’s a big collection for their granddaughters. Their house is a craftsman bungalow and it’s packed with all sorts of interesting collectables. And in their backyard was a big, strutting rooster. The story of the week on 2nd street seemed to be the fate of this bird, which apparently was purchased by one neighbor from another for dinner, but it escaped. While its fate was discussed in the neighborhood, the bird took refuge in Dickie’s backyard.
Later that evening we all went over to Laura’s cousin Matthew’s house. Matthew and Melanie have two boys — the second just recently born and the second grandson of one of Laura’s aunts to be given a first name of Coleman. Matthew was one of the cousins that came up to visit us this past winter. When I first joined the family, Matthew seemed to be the one with the most wild redneck personality. I remember a running joke about Matthew saying something like “Looka here what I done kilt” after picking off some animal from his truck. It was a line that echoed among Laura’s brothers and sisters as though it was yet another Saturday Night Live quote. Shorthand for a place and a lifestyle. Matthew works for a local ag company as a contractor spraying fields and I think he works spring, summer, and fall just so he can spend the winter duck hunting. But there’s a lot of family sentimentality in this good old boy, too. He’s one of the three or four in the family that’s always calling to keep in touch and check in. And Matthew now owns, after much effort, Mamaw Cassie and Papaw Lawrence’s old house — the small farmhouse that Laura and all the grandchildren remember well. So Matthew and I stood in his backyard, drank some Bud Light and he showed me antler racks and duck tags and told me stories about the people and the farms all around us.
We spent the next day, Monday, at Laura’s Aunt Bobbie’s. Bobbie is the oldest of the eleven Colemans and she and her husband Neil live on the main road south out of Holly Grove near a cross roads called Deep Elm. People call it Deep Elem, though, and claim there was an infamous juke joint there that was the inspiration for the Deep Elem Blues. “If you go down to Deep Elem, keep your money in your shoes; The women in Deep Elem got those Deep Elem blues.” (The roots of the delta blues include this part of Arkansas, but it’s hard to tell unless you search for it. I wanted to go to Helena this trip to try to get a sense of the history of the local black music culture, but unfortunately I didn’t make it.)
Bobby has a wonderful, pull no punches, down home personality and she always has something going on in the kitchen — greens on the stove, biscuits in the oven, fish in the fryer. Neil is a quiet man who these days spends a lot of time tending his garden, checking on his laying hens, or fishing in the bay. I know that I’ve settled into a visit when I can successfully chat with Neil — a slow, deliberate cadence from lips that seem to barely move and words that drip with local accent.
Neil had learned that Tina Wilson had a pond behind her place that was stocked with plenty of brim. I wanted to take the girls fishing, so Neil, Joe, Naomi, Lily and I drove to Tina’s house in Ragtown with a bucket of crickets and some makeshift fishing rods — one made from an old reed. I should probably be worried that the girls’ first fishing trip set unreasonable future expectations. The brim in the pond were so hungry that it almost didn’t matter whether there was bait on the hook or not. The line was never in the water for more than five seconds before the bob begun to dive and the girls would give a tug and out came one fish after the other. Twenty in all. They squealed with pride and posed for pictures of their catch.
When we got back to Bobby and Neil’s, Laura was resting. She had thrown up a couple times and was wiped out. It was the first time she’d been ill in a week or more. Even though Laura’s generally in good health, her chemo or cancer or both will shout out regularly to make sure we don’t forget she’s sick.
While Laura rested, we picked a few of the bigger fish (none more than 6 inches) to prepare for dinner. Lily helped scale them and both girls rolled them in cornmeal to be fried. I hoped the whole experience — a meal from start to finish — would be instructive, fun, maybe it would even test better. I imagined that this would be a watershed moment where southern cooking would awaken their appetites for good food, but alas come dinner they stayed with the reliable french fries and steered clear of the fish except to play with the fish skeletons now cleaned by me of every morsel.
Somehow that day the girls and I also squeezed in a trip to see cousins Kinsey, Katie, and Emma down the road in St Charles where Brandon and Misty have a swimming pool and dress-up clothes. Heaven!
The next day, Tuesday, was a lazy day. Laura slept. I took the kids boating. More visiting with relatives in the evening. Laura’s second cousin Angie came by, who has been dealing with her own struggle with breast cancer.
On Wednesday, we packed up to go, met at Bobbie and Neil’s again, and the other aunts — Ozella, Norma Ann, Arlene, and Brenda — came by to visit one last time. More photos and more tears. We left for the airport in the early afternoon.
Because of more weather delays we missed our scheduled flight and we spent an extra night in Arkansas — imposing again at the last minute on Jerry and Karen. Luckily Jerry was home this time, so we got to visit with him after all. (I only regret that he wouldn’t let me pay for the pizza!) The next morning as we waited to leave for the airport, Karen pulled out dance performance videos for Lily and Naomi to watch. Karen runs a dance school in North Little Rock and we watched the recitals from years back. The girls jumped around as they watched young children their ages perform for a crowd. Maybe a seed planted?
And then we were finally off and arrived back home in Ashfield to a quiet little house and bullfrogs and peepers.
So long Arkansas. Thanks to all who put up with us, fed us, gave us shelter, and otherwise made our visit so good. (The rest of the pictures can be found in the Arkansas photo album.)