Loose Strife

We met with Laura’s primary oncologist this morning for the bad news talk that no doctor or patient ever wants to be part of. We stewed all week, knowing only what the neurologist told us on the phone on Monday — that tumor cells were found in her spinal fluid, not wanting to be too presumptuous without an expert diagnosis, but expecting the worst. Laura has leptomeningeal metastases, also called leptomeningeal carcinomatosis. It means that her breast cancer has infected the thin tissue (meninges) covering the brain and spinal cord. This can impede the flow of spinal fluid, can put pressure on the brain, and otherwise cause havoc in the central nervous system.
Laura’s headaches, vomiting, fainting and so on are consistent with the disease, although not all are common effects. (Indeed some uncommon characteristics offer some glimmer of hope.) Often it’s hard to diagnose because cancer cells aren’t always found in the spinal fluid and it sometimes doesn’t appear in brain imaging — as is the case with Laura. But the facts are that cancer cells were found, glucose levels were abnormal, and spinal fluid pressure was elevated, which all leads to the sobering diagnosis.
The outlook is very grim. Most likely Laura has less than a year to live. Possibly much less. And of course possibly more. There is always hope. Don’t forget that through this rambling text. But the odds really suck.
Laura is the best thing that has ever happened to me. It is unfair to everyone that she has touched. But especially our kids. We have too much still to live and love for.
She’s doing OK with the news so far. I mean it was really really really rough at first. But after about six hours it starts to sink in. And we did see it coming. So far she’s OK. Feel free to call. It sounds odd, but I think we both feel better when others cry. It’s reverse empathy or something.
My parents coincidentally arrived for a long weekend this afternoon. And Laura’s folks are now planning to come to Ashfield after that. So we’re well taken care of.
It sounds horrible, but I’ve been sort of preparing for this all week. Now it’s here and our fears are realized. And the awful decisions that I worried about are in front of us. I suppose every day everyone is making little decisions about what’s worth their while and now it’s just magnified for us. But it all boils down to making the right decisions about quality over quantity. It’s something that Laura and I have talked about several times. Do you want to live possibly longer — possibly not any longer, possibly much longer — but be sick and stuck in a hospital, or do you want to burn bright and quick, engaged with your children and family? Of course, it’s hardly so black and white, but that’s the basic quandary.
I don’t feel like going into all the details about the treatment options right now. I’ll say that the most aggressive treatment is very risky, has a low success rate and limited benefit, and your quality of life is in the toilet. No treatment could mean rapid progression. There are middle road options, too.
But the uncommon characteristics that I alluded to leave us somewhat hopeful. In retrospect, Laura has been exhibiting systems of this leptomeningeal carcinomatosis crap for many months — first the uncontrolled vomiting and then the debilitating headaches. But, at least theoretically, because of the blood-brain barrier none of her chemotherapy treatment has been working on her central nervous system. Most people with untreated disease decline extremely rapidly, but Laura hasn’t. Furthermore, she hasn’t shown some of the typical symptoms like double vision. Laura is still very mobile and she’s functioning well for the most part. She has “attacks”, but it’s not a constant impediment. Nothing shows up on MRI scans. Cancer in the rest of her body is stable.
So it seems that the metastases are progressing slowly — which means time! But her relatively good health also means that conventional protocols recommend the most aggressive treatment… because she can probably handle it and something else won’t get her first. So do you compromise that good health for the hope of longer life or savor it? There are no easy decisions.
We have an appointment on Tuesday in Boston at the Dana-Farber cancer center where we’ll hear more for sure. Laura will likely make some concrete decisions by the middle of next week. The one important consideration for her at this point is that she wants to visit family. So timing treatment with travel plans are a big issue.
There’s a lot more to say, but I don’t know what to say about it all, yet. All the other stuff about life and plans and loose ends and legacy and so on: it’s what Laura is obsessing about right now.

Laura had been feeling relatively good since her spinal tap on Friday. She was walking with confidence and feeling very optimistic when I took her out for an appointment on Monday morning. All weekend we enjoyed the company of an old friend, Megan, from college and her daughter who visited from Manhattan. At breakfast on Monday I said to Megan that she had picked a good time to visit. Indeed, I wondered whether the visitors had lifted Laura’s spirits, improving her well being. Or maybe the Adriamycin was wearing off and better health was to follow. Laura hadn’t thrown up since Thursday. I was feeling hopeful.
I also wondered whether the spinal tap might have relieved her symptoms due to reduced fluid pressure on the brain. But that line of reasoning led down a path that I didn’t want to think about.
And then Laura had a bad attack at her appointment and threw up in the car. We spoke about our fleeting optimism and drove home feeling disappointed. Back at the house there was a message that her neurologist was trying to reach us. When we called back we learned that tumor cells had been found in her spinal fluid.
This is not good news. But I won’t say much about it now. We have spent an anxious day and a half waiting for a call from Laura’s oncologist, but for whatever reasons, we still haven’t heard from her. I may have more to say after we talk.
This afternoon we all drove Laura to an appointment in Deerfield and spent a few hours at the Butterfly Conservatory. It’s a wonderful place to go — especially in the dead of winter. 1000s of butterflies flittering all around you.

Laura’s lumbar puncture went fine. The neurologist showed us that the fluid was clear like water and so unlikely to contain tumor cells. We’ll know for sure next week.
Meanwhile, when the neurologist heard the news that Laura’s heart function had weakened due to chemo, he suggested that the headaches and unsteadiness might be due to reduced heart function. That explanation would be in some sense the simplest and most appealing. Since Laura won’t be taking the chemo drug with the cardiac toxicity anymore, it’s possible that her heart will improve and her headaches will subside.

Another in the Ashfield Patrol Log series:
12/22, 9:30 p.m. – After an accident on Spruce Corner Rd., police arrested Dwight Clary, Jr., 35, of Plainfield. He was charged with operating under the influence, operating to endanger and malicious destruction of property after Clary ate pieces of the interior of a Buckland PD cruiser, on the scene to assist, along with Shelburne PD. Damage to cruiser estimated at nearly $1,000. He also ate the collar of his shirt. Vehicle towed.

Late last year Laura started taking photographs as a sort of therapeutic activity. She hasn’t been out since November, but I hope she can start up again soon.
I’ve decided to sprinkle the blog with regular photos that she’s taken. It’s mostly stuff around the house because she hasn’t gone far for a while. Enjoy. (Click image to view.)

Quick post: Laura’s CT body scans from Monday were about the same as the ones a month ago. Her bone scan was not informative — which almost certainly means that there was no progression and the remaining sites in the scan are ambiguously either cancer or healing bone. (We’ll confirm later, but not something to worry about.)
Because her headaches and unsteadiness have returned and she’s been throwing up at least once per day, we contacted her neurologist again. She was sent in for a CT head scan this morning and will get a lumbar puncture (spinal tap) tomorrow (Friday). A spinal tap sounds horrible, but from what I’ve read it’s nearly painless and of very little risk. The full results won’t be available until the middle of next week.
While a problem with her spinal fluid is remote, we feel it’s better to eliminate unlikely causes than to worry about them.

We got maybe six inches of snow this morning after the edge of a Noreaster moved by last night. But it wasn’t hard for us to all get on the road to Northampton before 8. The kids and I dropped Laura at the hospital for another set of CT scans and a bone scan. Then we went off to play with friends on a snow day.
The scans themselves went fine and we’ll learn about the results in a few days. But Laura hasn’t been feeling as well as she did around the holiday weeks. I regret now that I didn’t try harder to get a babysitter and take her out on a date a few weeks back.
The good news is that the lightheadedness has mostly subsided. The bad news is that the migraines have become more severe again. It’s what everyone likes to call a vicious cycle. Headaches hit, Laura stops, lies down, is less active and interactive. At least once a day recently she gets a bad one that makes her throw up. So she feels awful. Doesn’t want to eat as much. Probably gets a little weaker. Wants to rest more and do less. It becomes too difficult to deal with the kids.
Sometimes she has better days — just a few moderate headaches. We joined some friends for some ice skating on Saturday and Laura was, for the most part, OK and could watch Naomi while I skated with Lily. But bad experiences can make it harder to want to go out.
Yesterday Lily was invited to a winter party at a nearby ski slope for what we thought was going to be tame snow play for preschoolers outside the lodge. Laura woke up in pain. I couldn’t leave Naomi with her and Lily would have been crushed if we didn’t go. So I planned to take them both. But then Laura decided to tag along because she thought maybe she could keep a half eye on Naomi if Lily wanted to go sledding with me.
It turned out pretty awkward. The only activity was tubing that was too fast and frightening for Lily and Naomi. The girls and I watched the tubing while Laura sat mostly with her eyes closed and head in her hands. The host seemed horrified and presumably figured that Laura was sick and obviously had cancer given her appearance. But what could she do? And why were we even there? Meanwhile the kids joyfully scoffed down sweets. But soon Laura gave me the signal, I quickly fetched the car, and she threw up in a bag in the front seat while I shuttled the kids out of the lodge without much incident. We made a hasty exit.
It was the sort of thing that’s a little embarrassing, but one feels bad for feeling that way. You feel good about getting out and being active with the kids, but bad for imposing your troubles on others and even worse that Laura feels so crappy and stuck in such a setting. It’s the sort of relatively insignificant event that makes it harder for all of us to do stuff.
Even so, the truth is that Laura just wouldn’t have left the house at all a month ago, so it’s something to be proud of, too! We don’t know for sure, but Laura thinks that the antidepressants are probably working. We keep noticing that she “feels better” even though her physical symptoms don’t seem to be much different than a month ago. That’s probably a good sign.
And yet there’s maybe more to be worried about now than before. I just can’t drop the concern that her migraines must be cancer-related even though her head scans were clear. It’s remotely possible that there’s cancer in her spinal fluid and we’re going to talk to the neurologist again about a spinal tap. There’s a lot riding on today’s scans, too. If Laura still needs chemo then she’ll have to change drugs. You don’t want to have to stop taking a drug that’s working and switch to another that may not. On the other hand, maybe her headache problems will go away.
On top of that, we’re worried about Lily a lot these days. She’s mostly fine and happy and well-behaved. But she has naturally responded to the losses and changes in her life. She often sobs for long stretches about things she lost or misses — strange things like a rug or “memories” from a home movie of times that she was too young to really remember. She’s very clingy and attached to things. In an inarticulate way I’m sure she fears losing Laura. It’s all very understandable, but Laura and I are going to meet with a child psychologist this week to learn more about how best we can help her through these times. We should have done so months ago.
So given all this, there have been better weeks. But do know that I’m really (honestly!) fine, Laura feels better in certain ways, the kids are just terrific and we feel very fortunate to have such adorable, loving children and such supportive family and friends. In so many ways it could be so much worse and more stressful!
Laura and I were talking yesterday and I was saying how I felt really good about being home and being able to be home. I feel like it’s just the right thing for me to be doing. She joked that she was glad that she could have cancer so I could find my calling!
But seriously, I have a feeling that I need to seize the day for these are extra ordinary times. And I think this sense of carpe diem is starting to take hold with Laura, too. She told me a week or so ago that she wants to do some traveling this year as much as she can — to see family around the country and maybe take a special trip somewhere.
I’m glad she told me. I was still on the fence about whether I’d place some big orders and plant a lot of rootstock this spring. I think I’ll hold off on that for a while.

Naomi has this role playing schtick that I’ve mentioned before. It’s her thing and has been for about a year. It’s delightful to watch. Little House On The Prairie is a favorite. “I’ll be Laura, you can be Pa, Mommy is Ma, and Lily’s not playing.” The last is a running joke in the house because Lily almost always refuses to participate in Naomi’s fantasy world. Naomi will then take on the other roles unannounced as you talk with her. “No, I’m not Laura, I’m baby Carrie.” “No I’m not baby Carrie, I’m Jack the dog.”
Sometimes it gets really weird when she builds mutant characters. “Let’s play birds. I’ll be the baby bird. You be the Daddy bird. And Mommy will be the Mommy bird.” (And Lily’s not playing.) “No wait,” she says. “Let’s play Max and Ruby.” (Children of friends of ours.) “I’ll be baby Ruby bird. And Mommy is Ms Anne Bird. And Daddy is Tall Boy Bird. Do you want to come to my ice skating party?!”
It can become very confusing, but somehow Naomi keeps it all straight in her head and will transfer both real and imagined traits to participants. In the bath last night she had a set of four dolphins who were her children: Naomi, Lily, Evangeline and Kaia. She was the Daddy named David. And Lily was Laura, who had a bad back.
The easiest way to get Naomi worked up is to request a different role. “Let’s play Laura and Mary,” she’ll say. And before she can assign roles I might say something like, “I’ll be Mr Edwards.” That gets her screaming mad.
So I’m feeling bitter about being typecast. How come she can switch roles all the time, but I’m always Pa? Or Burt (from Mary Poppins)? Or Caillou’s Dad (PBS TV show)? Or Joseph?
“Let’s play Baby Jesus,” she says a lot these days. The Christmas story has captured her imagination since the holidays. “I’ll be baby Jesus. Mommy can be Mary. You can be Joseph. Lily can be Harold Angel.” (Not a joke.)
“I’m not playing!” Lily shouts.
I was stacking wood yesterday and Naomi found a large planter box in the snow and crawled in. “I’m lying in the manger,” she says. This time even Lily was intrigued and agreed to spread her arms wide above Naomi while standing on a stump.
Sometimes, though, when there’s nobody to join her, she’ll just make it all up on her own. After we came inside, Naomi got into the pantry. I walked in to find all sorts of items arranged on the floor. I picked a few up and started to put them away.
“Hey!” Naomi shouts. “It’s not nice to steal gifts from baby Jesus!”
I put them back. And she then tells us that the box of macaroni and cheese in the plastic container is baby Jesus in a manger. The cereal boxes are the three kings. Mary and Joseph are the pair of juice bottles. The rest of the bottles are shepherds and angels. Some protein supplement and a large box of more mac and cheese were gifts for the chosen one.
The drama never stops.