Loose Strife

Laura is maybe feeling a little better this evening. But very tired and lots of neck and back pain when she moves, so she’s spent all day in bed. She occasionally says she would like to get up, but doesn’t. Her doctor had her double her pain medicine and that should be kicking in soon. If not, then she’ll go back to her previous medicine. In any case, a nurse will be out to see her in the morning.
I’m remaining optimistic that we can turn this around soon and so we’ve decided to try to walk in the Komen breast cancer walk in Boston on this coming Sunday morning. I’ll borrow a wheelchair and push Laura. If you’d like to join our “team” and walk together, follow the link to Laura’s Loose Strife team page and sign up. It would be fun to have a group of friends there with us — but I know it’s a long drive for most everyone. (The last day for online registration is Tuesday September 2, but you can just show up on the day of the event, too.)
Donations on behalf of Laura to the Massachusetts affiliate of Komen for the Cure are also welcome.
I’ll post here on Saturday with an update on our plans including a rendezvous at the event, if others plan to join us.

A few months ago, David offered us, Laura’s family, the opportunity to share our thoughts on this blog. I hesitated because I am not good with words when it comes to personal matters. And recently, I have cried through many of my thoughts when it has to do with my family. But, I thought now was a good time to share some of my more secret thoughts. Some of these things I have told Laura, and some I have not.
From an early age, I was the middle child. My little brothers played together, as did my older sisters. I kind of just jumped in when I could. Plus, Laura and Heather were more alike than I was to either of them. Yet, they were what I wanted to be: both beautiful and smart girls. Especially Laura. She was an original thinker, independent in spirit and so funny. She loved to read, was very creative and artistic, and always had good grades. I, however, was more quiet, fairly average, and enjoyed sports. We were different, but I didn’t regret it.
Our family loves being a family. We always had dinner together, walked to school together and attended Mass together. We learned love and family went together.
As we grew up, older sisters went away to school. I lived at home when I went to college. I worked as a college student, quietly making my way. One year, Laura offered me a chance to experience dorm life during part of my Spring Break. I remember thinking, “YAY! Laura wants to hang out with me.” I got to do this a couple of times and loved spending time with her. I met David during one of these trips – he was the guy who played drums and lived at a house with a funny house number. I didn’t ask much about him, but I could tell he was special to her.
Life went on. Laura decided to meet David in New Zealand one year and the two of them would travel all over for six months. While eyebrow-raising, it didn’t really surprise me. We had parents who both left their homes to travel, after-all. Sometime after their trip, Laura and David got engaged. I was thrilled for her. During the planning, Laura asked me if I would make their wedding cakes. Last week she told some of her friends that it was selfish of her, but I was delighted to be part of her wedding. I wanted happiness for her, and if I could give her a little bit of that, why would I refuse?
More years went by. Laura played travel guide when my David and I visited her in Santa Cruz. Laura became an aunt when my son was born and made sure she visited lots so he would know her well. We were together painting a bathroom on September 11, 2001, trying to ready our new house before my daughter was born. Laura and David hosted us one November and attended an Oakland Raiders game with us (quite the experience!). She flew home for lots of visits, before and after her girls were born. In these years, I began to see that even though we were different, there was so much love for each other.
So many of these thoughts came back to me during our “Tea at the Ritz escape” last Tuesday. Laura is thoughtfully observant and knows that I don’t do much for myself (having four kids can do that, I guess). She gave me her time and I gave her mine. No kids, diapers, computer, dinner prep or husbands. Just us. And we ate, talked, cried and rested. We had an adventure together. We shared secrets and concerns for the future and from the past. So much of that is deeply personal – sisters’ secrets. But, I will share two things from out time together:
1) I told Laura that I am grateful that I cannot remember having cross words with her in our past. I am sure that there were times, but so much of our lives has been tremendously happy and loving.
2) We never actually had tea.

Laura had a hard day today. Yesterday she switched to a different extended release pain medication and it is not working as expected. She’s compensating with additional immediate action meds, but is still in pain and spent all day in bed with little sense of time. While the pain isn’t extreme, it seems to have really knocked her out. Today was agonizing for everyone.
There are so many annoying issues. Laura switched to a narcotic patch (applied to the skin) on Saturday morning because she was having difficulty swallowing pills. But patients respond differently to different narcotics and so the dosage equivalent between the old and new meds is estimated. It takes a good 24 hours for the new med to become effective. This morning (Sunday) it was obvious that there was a big problem. Now I’m frustrated that her nurse recommended that she switch on a long weekend instead of during the week when she could be better monitored and managed. And I’m frustrated about several other technical issues regarding the nurse’s diagnosis and instructions. And I’m angry that we even bothered to switch drugs because it seems to have created a lot of possibly unnecessary troubles that can easily wear Laura down in her current state. It turns out we could have changed to a liquid form of her previous medicine at the known, correct dosage.
I hope we can sort it out tomorrow.
I’m really feeling awful lately for all of you far away. I hate the thought of all the anxiety I’m creating. I know you want to keep up to date, but partial information without the ability to do anything about it seems cruel. I’m sorry for that.
I also ache for our friend Megan. Megan last visited us in January when Laura was going through some of the worst weeks of the last year. She was here when I received the dreaded phone call about the leptomeningeal disease. And this weekend she returned to visit again.
In between then and now Laura has twice bounced back from very serious troubles to be almost free again. And I’m sorry that our good friend has missed those times.

I keep getting asked how Lily’s first day of school went. She’s now had two half days and starts full days of kindergarten on Tuesday. So far so good. Excitement riding the bus and only good things to say about school.

As a girl of few words who clams up when asked for details, she has actually volunteered that at the end of the first day of school the students were asked to rank school from 0 to 5 stars and she gave it a 4! And today she said that the visit to meet her teacher last spring was “boring”, but she has changed her mind and thinks that school is a lot of fun! Partly this is because she knows about half of her class from the Ashfield Preschool and one of those is her (new) “best friend Jaden!” (Shown at right with teacher. Thumb firmly in mouth as she starts to zone out, perhaps overwhelmed with new stimuli.)
Lunch money, gym class, school assemblies. It’s all old hat now. When I tell her that her next day of school isn’t until Tuesday because of a holiday on Monday, she rolls her eyes at me and says “Dad!” in an exasperated tone. “I know. They told me that at school already.”

I don’t really know why, because I hardly did anything, but I’m trying to remember the series of events during our trip to Virginia and it’s not quite all there. I checked my camera; didn’t take many pictures either.
I drove Laura and the girls down to Annandale on Friday. We stayed with her parents as usual. Joe had smoked a heap of barbeque, so I was happy, but other than that I don’t remember Saturday. Lots of visitors on Sunday — friends from college, friends of the family, and family, too, of course. I can’t recall the details, just the sense.
It’s a wonderful thing to watch Laura interact with everyone: the wit and humor easily roll. That’s something that just doesn’t happen at home. Lively repartee is something that, for the most part, faded from our daily lives years ago. You know each other’s thoughts, one-liners and jokes, opinions on news and arts and so on. And this blog clearly reveals that I’m about as dry and humorless as one can be. (See? I can’t even think of a joke to describe my lack of wit.) So I’ve always loved being out with Laura with others. I can revel in the humor and the quirkiness. It reminds me how lucky I am that she picked someone as dull as me.
I wondered how people perceived Laura’s condition. From my vantage Laura has been stable for a while now although I’m aware of every little struggled gulp of water, stumble, mumble, and stolen 40 winks. I don’t know if others are startled or relieved and I haven’t asked. I did ask my sister whether Laura had changed since she saw her about a week earlier. The answer was yes: more tired and frail. I probably don’t see these longer term changes well as it happens gradually.
The best part of our trip was Laura’s disappearance on Tuesday. We had planned to drive back to Massachusetts, but late Monday night Laura told me that it had suddenly occurred to her that she wanted to take her sister Elena out to tea at the Ritz and splurge and spend time with just each other. It was foolish and frivolous, she said, but she thought she would regret not doing it more than doing it. So on Tuesday morning Elena dropped her four kids off with my two and they disappeared, driving towards downtown. Nobody asked any questions.
I thought they’d return in the afternoon, but around dinner time I got a call from Elena asking “if I knew that Laura wasn’t planning to come home?” And so it became a sort of Thelma and Louise adventure. We bunked all the Shac kids with my kids for a big slumber party at Natalie and Joe’s and wondered when we might actually see the moms again. I still don’t know what all they did, which seems appropriate for a pair of sisters on the lam. Joey and Lily were both thrilled at the thought of their mothers not coming home, staying out late, and having fun together. “Maybe they’ll get room service!!” Joey shouted with a huge smile.
When I read what I just wrote it sounds all unremarkable, but at the time there was a sense of the bizarre. I’d say the unspoken feeling among the adults was that the escape was odd and a logistics hassle (the travel delay, school, food, sleep, visitors, work), but who was going to deny Laura’s wish? And it was really not a problem. Dave Shac and I half expected we’d get a phone call from Charleston or some other faraway place the next morning, but Laura and Elena returned home mid-morning and we hit the road for Massachusetts soon after.
I hope she keeps it up.

Laura’s been doing about the same over the last couple days. Maybe a little more pain. But mostly she’s frustrated about her fatigue and irreversible troubles like her double vision. Her fatigue continues to be severe — as I mentioned last time; she struggles to keep her eyes open most of the day. And so she’s frustrated because she has too much to do, she says: mementos to sort through, letters to write to the girls as they grow older. She makes lists and more lists and recompiles old lists — partly because of memory loss, but mostly because she just wants to get things done. Lots of mundane things that I want her to forget about. (Buy an extra plunger or new blinds for the bedroom.) Other things are gifts and related. (Maybe that used book store will have a specific book for so and so.) Laura is thinking a lot about what she wants to leave people and frustrated that she can’t get it all done.
Yesterday she asked me to pick out a box each evening to give to her to sort through. She wants to sort things into throw-away, precious, and characteristic. But she’s been too tired. Ten days ago the steroids had her wired and she was bouncing from one topic to another with intensity, but she doesn’t have that energy anymore. Yesterday evening I found her crying in bed because she heard the girls and I laughing and playing games outside in the yard, and she was overcome with grief that she would miss so many happy days in our lives. She said she cried because she was so tired that she couldn’t bring herself to come outside — robbing herself of joyful times even while she is alive.

Her doctors aren’t offering anything to improve the situation. On the contrary, they’ve been somber and comforting, but said that her sleepiness is most likely due to advancing disease. It could also be partly due to radiation and so it’s possible that the situation will improve when she finishes her radiation treatment at the end of this week. When I tell the doctors that it makes me anxious — that I’m frightened that she might not wake up — neither her oncologist or radiation oncologist contradict me. They say sleepiness is symptomatic of progression and they seemed to specifically avoid giving me false assurances. During this conversation with her radiation oncologist today I also mentioned how I wished Laura could rid herself of the burden of her long task list, and Laura replied that she didn’t want to because she worried that if she gave up on her lists, then her body would give up, too.
Also today, Laura asked her doctor if there was anything that could be done about her double vision — or for that matter any of her other handicaps. To which she was told that there probably wasn’t — save the remote possibility that her current radiation treatment could improve her symptoms. The thought that you are permanently disabled is a hard pill to swallow. Besides the awful sadness about it, Laura feels a sense of guilt that she should be “doing more,” whatever that might mean, to fight her disease. That maybe others expect her to not give up. When the home nurse visits began again this week she wanted the “palliative team” not hospice because hospice has all the associations with death and the end of curative treatment that she doesn’t want, yet.
Her feelings of not letting go are probably coming from the same place as my foray into the “what ifs” that I wrote about last time. It’s awful to worry that somehow maybe Laura is misdiagnosed or being mistreated, but it seems unavoidable to obsess over it. And her oncologist is very kind about it, telling me that it’s important for me to feel comfortable knowing that other possibilities were reasonably rejected. She willingly indulged me and had Laura checked for hypoglycemia and we talk about the links between some of her drugs, diabetes, and stroke. With a little imagination and some google searches by this time last night I had worked myself up to almost a level of fear of malpractice. But I’ve settled down again. For example, my obsession with stroke recently is pretty much immaterial; it’s remotely possible that she had a stroke, but there are many good reasons why she probably didn’t, and even if she did then her treatment wouldn’t differ. I need to let it go.
All this somber writing of late probably makes many of you as anxious or more so than me because you’re not here to see Laura walking and talking, visiting friends, traipsing through stores, shuffling around the garden. If you were here I think you’d probably find our heightened anxieties this week to be premature. One of the visiting nurses said to me this morning, “if it makes you feel any better, Laura’s vital signs are just fine and she sure isn’t showing any signs of imminent demise.”
If you’re in Virginia this weekend, you can see for yourself. Laura decided that she wanted to see her family again before school starts. And when school does begin, Laura told me she’s looking forward to the weekdays when the girls will be out of the house for hours and she’ll have more time to get things done!
P.S. I’ll close with a quick follow-up to a comment I made in the previous cancer post when I was trying to illuminate how Laura seemed to me to not be accepting the reality of the situation (as though that is necessary!). In that context I talked about what we say to the girls and I said, “But we had decided that it was premature for Laura to tell the girls that she might not ever get better.”
This touched a nerve in several of you and I received advice essentially along the lines that there is no reason that Lily and Naomi need to live the coming days in constant fear that their mother will die. I totally agree.
Writing about kids is tough. I often don’t have very coherent thoughts about it and it’s a very emotional and contentious topic. I hate being in this situation as a father and I hate the fact that I could be doing so much more for my children in so many ways that I’m not. But I’ll tackle this one anyway.
Many kids (and probably ours, included) worry and imagine scenarios that are unlikely to pass. And so we think it’s important that they don’t suffer unnecessary anxiety over the unknown and that means that we need to be open with them about what is happening. For us this means making sure that they feel free to ask questions and they get honest, simple answers that they can understand. Now in our case our kids don’t like to ask the really scary questions for the same anxious reason. They’re OK with “why are you wearing an eye patch?” but you won’t hear them ask, “are you going to die?” Even though I’m sure it’s there, we have no intention of answering this question without prompting. Nevertheless, we also think that it’s important that we don’t sugar coat a dire situation so that the reality catches them totally by surprise.
I don’t mean to suggest that we would force on them some hard truths and crush their spirits. I only mean that we don’t say things like, “Mommy is in the hospital so they can make her well” and when we talk about treatment we might say something like “some people with cancer get better when they take this kind of pill and others don’t.”
Laura and I have spent a lot of time talking with experts in child grief and behavior and it seems that the most important points are to be empathetic, to encourage them to articulate feelings, to answer questions truthfully, to not deceive them, and to ensure that they are not left out if they want to be involved in whatever is going on. We’re led to believe that acting in these ways tends to result in children who can better cope with traumatic events. I hope that’s the case.

Photos from June, July, and part of August are finally up in the photos section.

Over the last week Laura has been in surprisingly good spirits even as her sundry problems continue to worsen. Her vision and balance is further deteriorating, which is her main complaint. Getting around is annoying and sometimes difficult. Laura can’t decide whether the double vision is better than the loss of depth perception if she covers one eye.
My biggest disappointment is that she is now able to eat only soft foods because she can’t chew well. And swallowing is sometimes difficult. To me, those are ominous signs. Or at least that’s mostly been my attitude.
There has been an on-going concern for a year now regarding what to tell our daughters and when. Of course Naomi and Lily are well aware that Laura’s sick, that she has something called “cancer”, that it has continued for much longer than most people are sick, and they are reminded of Laura’s problems every day seeing their mother and also getting shuttled around to accommodate the logistics for hospital stays and frequent (now daily) appointments. But we had decided that it was premature for Laura to tell the girls (Lily, the older 5 year old, in particular) that she might not ever get better. And Laura still isn’t ready.
Yesterday Laura said that she thought of her current troubles as yet another low point to get through and that the girls don’t seem to be taking much notice to the current situation. I told her that I thought that the kids were taking notice to very major changes happening almost every day. Laura responded that maybe she was being delusional, but she had been through tough times before.
She has repeatedly talked about getting a physical therapist to give her exercises to improve her facial muscle control, as though she had a stroke and needs rehabilitation. And she asked whether she should go see a doctor about her double vision — ignoring that she recently saw her eye doctor and spent many days in the hospital with a neurology team. Then she raises the prospect of drug interactions.
I worry about her wishful thinking and seemingly naive attitude. What’s going on? Who’s right? Does it matter? I’ve felt so pessimistic in the last week and I’ve been dismissive of Laura’s efforts to explain away her symptoms. But even if Laura doesn’t seem to be rational to me, who am I to tell her what’s “really” happening? Maybe her attitude is a practical, if not rational, way to cope with a tremendous fear.
In any case, I’m not exactly consistent either. My attitude seems to flip flop every couple days, so how can I judge? After all, I urged her to choose intrathecal chemo (ultimately a bust), while she was too exhausted to want to act. And later I felt hopeless that anything specific could be done for her, while Laura wondered what she could be doing to improve her symptoms!
That’s about how I felt on Friday, when I flipped again. I had heard Laura talking to a friend and try to blame her current condition on her drugs. I knew that was absurd; her symptoms — the speech and mouth problems, the troubles walking, and others — were expected from advancing leptomeningeal disease. But then I read the side effects for Zyprexa, the neurology drug that she was given after leaving the hospital. The drug was prescribed because her neuro-oncologist had personal experience that suggested it was anti-emetic (keeps you from throwing up). Immediately after she started it, Laura stopped throwing up, so I was sure it was due to this drug. But I also saw that the “serious side effects” included confusion, drooling, severe or prolonged dizziness, increased thirst, tremor, trouble concentrating, speaking, or swallowing, vision changes, and several other suggestive symptoms. I got her neuro-oncologist on the phone, and I said, “You’ll be surprised to know that since we left your office a week ago Laura hasn’t thrown up or had a headache, but now she’s got a whole host of other troubles,” which I rattled off and linked to the Zyprexa label. Indeed he was surprised, and then he shocked me by saying, “but Zyprexa probably isn’t keeping her from throwing up — it’s probably the steroid. I think it’s very unlikely that Zyprexa could be fully controlling her vomiting and it’s also very unlikely that it is causing her new symptoms. But she can just stop taking it and find out!”
Then I saw myself suddenly as the irrational one having spent a week watching Laura suffer new troubles when it was possible that the cause all along was not cancer, but yet more drug side effects! I tell Laura about my new “guarded optimism”. She’s nonplussed (grrr!), but doesn’t mind going off the drug. Every six hours or so when Laura would have been taking the drug, I ask her instead whether she’s feeling any better or worse in any way. Now it’s been two days later without the drug and there’s no change. Another let down. Who’s being delusional now?
It doesn’t stop there. Today we went to Northampton to mass and then to visit with some friends in town. Despite her best efforts, Laura could not keep herself awake in church or in the car. Oh shit. What’s going on now? I got scared and left a message for her oncologist to call me. Months ago we were told that Laura would become increasingly tired and probably die in her sleep when she passed away. Was this the beginning? I calmed down a little after Laura woke up and started visiting normally. Then she took a nap at our friends’ house and while she slept I talked about how Laura appears as though she had a stroke. And suddenly I wonder whether she did have stroke! I add this possibility to my mental list of questions for her doctor, who hasn’t called back, yet, but I decide to just wait until the morning. I add diabetes to the list for good measure. I know I’m being a manic schizophrenic.
All the while, life goes on. We hurried back home to Ashfield to pick up a new babysitter. Laura and I had tickets for the annual Iron Bridge Dinner in Shelburne Falls. 400 people arrayed across the bridge, eating a meal prepared by local chefs. Sounded great until it suddenly dawned on us that Laura can hardly chew. Why the hell are we going out to eat?!
To our delight, it worked out OK after all. In fact, it was fun. Laura slowly managed tiny bites of almost every dish and even enjoyed some conversation with strangers at our table. We were both really pleased to make it out on a date and have fun. Laura’s main disappointment tonight was that she was unable to smile, but she still looked great.

Laura has continued to do well in the sense that she’s keeping food down and is not in much pain. She sleeps till noon, but then has much more energy than she has had for months. Baking a cake, finding new recipes — she hasn’t cooked anything for ages — and today she spent the afternoon shopping with my sister (her family is visiting) and then picked up lots of junk food “now that my appetite is back.” “To each his own,” I said snidely, recalling our recent chats about the girls’ penchant for processed foods. She replied, “Eat, drink, and be merry. For tomorrow we die.”
Last night she asked the table who liked the squash gratin dish that she baked and then counted hands, “two, four, six…”
Laura wore the kids’ pirate patch on her eye much of the day on Sunday.
So there’s this definite sense that she’s doing better even as she’s getting worse.
Yesterday we met with Laura’s local “general” oncologist who is essentially her primary doctor now. Laura had written a long list of current symptoms: double vision, balance problems when walking, eye lids droop, speech is sometimes slurred, mouth is extra dry, trouble chewing, short term memory loss. It’s an ominous list of troubles that apparently all point to the presence of undetectable “micro-tumors” in the base of her brain.
Her primary oncologist recommended that Laura get radiation to the base of her skull, which her neuro-oncologist had independently suggested last week. Laura’s radiation oncologist was paged and appeared in the exam room within five minutes. (This is the doctor you may recall who is so committed to her patients that she calls our house just to check in, works to move heaven and earth or at least administration roadblocks to get Laura the best care, and calls in her technicians on the weekend just so Laura can get a head start on her treatment.) Her radiation oncologist was eager to help as soon as possible and had Laura in her office an hour later for preparations.
Radiation is always risky and in this case it is a little more so in that Laura had whole brain radiation only four months ago and conventionally this kind of followup radiation to the brain is not done for at least six months. But the risk/benefit trade-off is clearly in favor of starting immediately. Laura responded remarkably well to the last radiation treatment to the base of her spine, so I’m feeling very hopeful.
On a completely different note, I finally found a video conferencing program that works (very poorly) using our satellite internet connection. It’s Skype and our skype ID is “davidkulp”. So if you want to say hello to Laura or the kids and see their smiling faces, feel free to sign up and call. (It’s free.)

The last two days have been surprisingly very good for Laura. I’m keeping my fingers crossed that the drugs she started on Friday are the reason why she is no longer throwing up, is eating normally, and has had no headaches. And when Laura’s awake, she’s been doing lots of normal activities — rummaging through old clothes boxes in the basement, organizing photo albums, checking on the progress of our tomatoes.
I’m thrilled. She’s less so. Other annoying problems have crept up in place of the others. She consistently has double vision now and she feels less stable walking. But being able to eat again and free of pain seems like a big improvement.
Thanks so much to my parents who happened to be here during the last 10 days and were such a big help. Mom, I’m sorry I’m such a jerk sometimes. As it’s always been, I have no excuse.
Oh, and speaking of whack-a-mole, our guineas all got whacked over the last week. I raised a half dozen birds this summer and at 3 months old I let them out of the hen house to free range. They didn’t want to return and spent the nights in the tall pasture grass, instead. Bad idea. Over a couple nights their numbers kept falling. I tried wrangling them back in the barn, but they didn’t get the idea that the barn — that place where they had safely spent the first 12 weeks of their lives — is where they should be sleeping. Finally there was just one guinea furtively pacing outside the house and yesterday it was gone, too.
We’ve had loads of visitors recently and more to come tomorrow. I’ll try to make more of an effort to post photos. I know I’m way behind.