Over the last week Laura’s condition has not improved and in some ways has worsened. The upshot is that although she usually has a burst of energy about once a day, she spends the vast majority of the day resting and is no longer eating very much. Laura won’t be taking the trip to California this week. Instead she and I have come to accept that she’s at a new stage where I can let her comfortably rest without attempts at heroics to reverse the course of her disease.
A little more than a week ago, as I explained in a previous post, Laura had a surge of energy and was still conflicted over the stance to take regarding her treatment. We had met with a new doctor last week and that meeting revived topics for aggressive management such as radiation, feeding systems, and so on. But this week has been a quiet, resting week for Laura and we’ve come to believe, in consultation with her oncologist, that new treatments or invasive “life saving” choices are unlikely to reverse her decline or improve her quality of life.
Today I changed Laura’s “code” to DNR (do not resuscitate). It sounds like a dramatic step, but at this point it is just a practical and obvious formality. We don’t need ambulances and paramedics rushing through the house.
Laura’s days now are spent mostly sleeping and she eats and drinks very little. It’s how her body is naturally shutting down, and she’s OK with that. Until today I had been very worried that I needed to ensure that she maintained some minimum required inputs according to some standard of care. But that’s not the case and Laura can direct what she comfortably wants to consume. She still is throwing up, which is an unresolved problem, but she usually can keep liquids down.
Laura’s pain is not a problem while she’s still, but she has back pain that is sometimes very bad when she moves or coughs. So today her morphine pump was adjusted so that I can give her a big extra injection before she gets out of bed. Her coughing is due to fluid in her lungs, which is there probably because her lungs are no longer strong enough to clear them normally. So today she also got a special patch that inhibits secretions into the lungs and should help dry her up over the next few days. (I’d like one with my next cold.)
Remarkably she continues to manage the stairs on her own, but climbing back up is increasingly difficult. However, for a couple days this past weekend, she remained in bed upstairs and rose very infrequently. On Sunday she had no sense of the passage of time. This was particularly sad because we had a potluck at our house with about a dozen families, but Laura didn’t want to wake or rise and didn’t know what was going on even when reminded repeatedly. I fed her drops of juice with a child’s medicine syringe. At the time I worried that it was my fault because I had let her take a sedative that morning (because she was complaining of not sleeping soundly) and that may have really knocked her out — and missed perhaps a last opportunity to see many of her friends. The nurse thinks my theory is unlikely because Laura takes the drug regularly, although not daily, and her body quickly adjusts so that extreme response is unlikely. I hope so. In any case, I saw it as a new ebb for her (from which she’s improved since) and it made me more convinced that she was moving into an “active” phase of dying. Her oncologist agrees. I invited Laura’s parents to come up. Joe and Natalie will be here this week.
So that’s where we’re at. Laura continues to surprise me almost daily with periods of impressive stamina. (Just now, as I’m getting the kids ready for school she suddenly sat up and said, “What am I supposed to be doing?”) It makes me momentarily hopeful and for a while I question my dire thoughts and the tone of my conversations with her nurse and doctor. Yet for the most part, I’m comfortable with how she’s being treated and Laura seems to be, too. Admittedly, Laura and I don’t have deep conversations about any of this now. It’s more leading questions from me, a nod from her. But I’ve asked her several times whether there is anything that she’s concerned about or wants me to address with her doctor and she has said no.
The girls are mostly well. Naomi seems almost completely oblivious. Lily remains terribly anxious, but doesn’t want to confront her fear and I’m sympathetic. Lately Laura has thrown up conspicuously in front of the children several times. Naomi pays no attention. Lily covers her ears and watches from behind a door frame or corner wall. Tonight, while Laura vomited at the dinner table, Lily said, “I want Mommy to stop spitting up.” Lily said that she doesn’t always throw up herself when she’s sick. I reminded her that cancer was causing her to throw up, sleep all the time, and walk poorly. She cried a little, sucked her thumb, and hugged me for a while. On Sunday Lily watched me using the syringe to feed Laura and she heard Laura repeat the same questions without presence of mind. “Mommy is being funny,” she first laughed and she asked if she could drink from the syringe, because, of course, it looked like fun. But soon after as she went to bed it was obvious that she knew things were bad. She cried, but would not let on what was upsetting her partly because she can’t articulate it and partly because she is more afraid when it is put in words, I think. I sat with her for over an hour until she finally fell asleep.
For a few days I worried strangely that Laura’s sickness was now so common to the girls that Lily wouldn’t recognize that Laura was dying and her death would be more of a shock as a result. I think now the truth is that Lily is aware, but that Laura’s death will, of course, still be a huge shock.
Where we’re at
Wed, Sep 24th, 2008 7:26am by dkulp
Tags: Uncategorized
16 responses so far ↓
1 Lisa Young // Sep 24, 2008 at 6:32 pm
David, Laura and the girls.
This Lisa Young, I live next door to your mom and Dad in Red Fox. I have been following your post since she sent me the item about the run you all participated in. Your courage, strength and love amaze me everytime I read what you write.. and the fact that you are willing and have spent time doing this. I have been thinking about you all and the girls… I know Lily and Emily (my daughter) are a week apart in age. I just wanted to let you know that you are touching the lives of everyone in strange ways. I know I have thought about Laura these past few months and about your mom and dad and what all this means. Your mom has updated me often. And, It has given me an opportunity to evaluate my own life, the courage and willingness to be a better mom and to make sure I enjoy every minute I have with my kids and family. You all are truly amazing. I am here, in a distant way, only offering support if it will help– and to you and your family up North in case you need more of them. I don’t really know what else to say– except Laura’s story is truly remarkable and your perspective through all of this is something I could only hope for.
2 Elena // Sep 24, 2008 at 7:18 pm
I know that Laura wants to fight but she is just so tired. There is little that any of us can say or do to change that, but it does help to know that you, David, have been the love of her life and have given so much to her these past 14+ years. She is fighting to have more time with you and the girls. Who can blame her? I think of you all so often through the day and night. Please pass my love to everyone there.
3 Shannon Coleman // Sep 24, 2008 at 8:01 pm
David,
Thank you for your heartfelt updates and thank you for being all that you are to Laura and the girls. You all are in our prayers.
Shannon and Madison
4 Alisa Greenbacher // Sep 24, 2008 at 10:26 pm
David–
This is Alisa Greenbacher here. I read your posts all the time and think about you guys just as often. Your girls and Laura are so very lucky to have you in their lives. I don’t know you well, but what I do know is that you are incredibly strong, nurturing, insightful and constantly there for your girls. All of that is to say that you are an extraordinary person.
I wanted to share with you the name of a woman in Amherst, Anne Woodhull, who is an exceptional person. I know you have given a shot a therapy with the girls, but that it didn’t quite fit what you wanted (I think Julia told me). Anyway–what Anne does is different–she is an art and play therapist. She has a gorgeous studio filled with endless art supplies and hundreds of little figures. Children create and play with her whatever they want to do–it is child directed. It is very cathartic for the children to work in this creative way and Anne is amazingly skilled.
In a sense, the child begins to create a story that helps them heal and she facillitates this and talks with the parent about the process–rather than try to have “talk therapy” with kids (which usually doesn’t work for our aged children).
Anyway–she is very experienced in working with kids –I think 30 years or so–She and her husband run Bramble Hill Farm in Amherst–I have the number if you are interested.
I hope this is not intrusive at this time. I think Naomi and Lily are blessed to have you there and that what they are experiencing right now is probably impossible for any adult to know–how do we ever know what goes through a child’s mind??
Well I hope this info. is helpful and not intrusive.
My thoughts and prayers are with you all.
-Alisa
5 Mark Taggart // Sep 24, 2008 at 11:58 pm
Dave,
I thought about your previous post all day today, because I was so moved that I felt I had to say something to you and Laura, but I couldn’t come up with the words; now I read THIS post, and it’s even harder to find my voice. I told Laura in June that I’m terrible at telling people that everything will be all right when it clearly will not be. You are right– this cancer is “a miserable, grievous, unjust stab.” It is pain and suffering that Laura does not deserve, and thinking of how it affects you, Lily, and Naomi fills me with sadness and rage. My personal belief is that mercy does not exist beyond our conception of it; it’s a beautiful miracle that we have the ability to show mercy to other living beings. But the universe has no obligation to grant any of us a reprieve… and in the end, it won’t. And though I understand that, I HATE it. I desperately want to notify the Department of Cosmic Justice that it screwed up, that cancer is supposed to take down some heartless war profiteer, NOT LAURA. How could the order of things possibly be so f***ing backward?
I know you know the flip side of this worldview, the one that puts it in context and offers a kind of hope: the only mercy, order, and love that exists in the world is what WE make. I look at you two facing this senseless situation, and of course you’re afraid, and angry, and sorrowful, because you’re facing a tremendous unknown. You are also compassionate, striving to manage Laura’s suffering with every step. You two are dignified in your struggle, continuing with strength that Naomi and Lily will draw on again and again in the future. And it took me just a few minutes with you all at your farm to witness the particular kind of deep love that only those who actively strive for it ever seem to achieve.
This disease inflicts pain for no good reason because it is in its nature, not because it’s part of some obtuse plan. I read the pain in your posts and I want to relieve it, Laura’s and yours, but I have no ability to truly do so, and I hate that fact, too. Again, I can’t say it will all be OK. Your family faces hurt larger than I can imagine– I believe you will endure, and any support I can provide to help you do so is yours (as always, I’m certain many others extend the same promise). But ultimately, this illness is unfair and senseless. I am truly sorry, Dave…
I did recall an awesome little unquestionable piece of order as I was walking the dog this evening… when I visited in June, I was spinning one of my many ridiculous untruths for/at Lily (like that one about how her Mom once dressed up as a KISS God of Rock’n’Roll at the Beaux Arts Ball… ridiculous!). She cocked her head, her eyes narrowed slightly, and her mouth got a little twist of a sideways smile to it, the SAME EXACT WAY Laura would look at me back in school, just before delivering a fib-squashing “Shuuut UP!” A beautiful reality: she was not Laura, and she absolutely WAS Laura.
Naomi followed soon after by telling me her horse’s name is “Fishy!!” Which doesn’t really offer evidence of order in the universe… it just proves that your kid is a better artist than I am.
Please tell Laura that I love her, you, & the kids like the righteous posse you all are & will always be.
6 Laura Dalton // Sep 25, 2008 at 12:00 am
David,
Thank you for continuing your blog and allowing all of us far away to take part in your struggles. It must be so hard to find the time to write given the roles you are juggling.
As a friend and a physician, I want to let you know I support the decisions you and Laura have made 100 percent. I know it’s normal to have doubts, and for others to question your decisions, but I think you have both been amazing in your fight against her cancer. Every decision you have made has been well-thought out and loving. Laura is so lucky to have you by her side.
We are all thinking of you, Laura, and your beautiful girls, here in Berkeley, and send our love and support. Our door is always open for you and your daughters.
Laura
7 Tom Duesterhaus // Sep 25, 2008 at 7:43 am
David,
I resonate with so much of what Mark had to say about feeling helpless, but also, and I would say more importantly, about what a powerful love you and Laura have for each other and for Lily and Naomi.
It’s that love that keeps poking through my thoughts and concerns and prayers for you guys – so I guess I just want to say thank you for that gift that you reminded me of on your recent trip to northern Virginia and during the all-too-brief time that I had with you guys back in July.
Please give my best to Laura and the girls – tell them all I love them.
Tom
8 Tedd & Elana // Sep 25, 2008 at 8:56 am
As always, we love you all.
9 Karuna // Sep 25, 2008 at 11:17 am
Dear David, Laura, Lily and Naomi,
You all are amazing, courageous beyond words, and generous in your sharing. You are held in so much Love, beyond what any words can express.
I was so hoping to see Laura when she was planning to come to California. A couple of days after I heard she was coming, I had a clear vision of being with her, hugging her for a very long time, and then taking her face gently in my hands and saying, “Honey, you are so beautiful! So amazing! So Loving! So courageous! You are the living example of God, and heaven exists in your Heart and your Love.” This vision brought me to tears (as if it had actually happened). I guess it really did – but on another plane of reality. Because I know that despite my (our) need for a physical connection to validate our Spiritual connection, the Spiritual plane is real, and often more so than we know. I guess all this is to say that even though Laura’s physical reality and physical abilities are declining, there is her Spiritual self that is growing and expanding. And as she physically fades, that space will be filled with her incredible Spirit, until that is all there is. She will remain with all of us – long, long after her physical self is gone. As for Lily and Naomi, they are of an age where the pain of losing there mother is real, it is not speech ripe, and not even close to being understood in their young minds. However, their Hearts and Spirit do know and will continue to remember (as they age), that their connection to Laura is never gone – and will continue to not only inform them, but nurture them as they grow and learn and love even more.
Many Blessings to you all. And my home and heart are always open to you.
Love,
Karuna
10 Anita Culosi // Sep 25, 2008 at 3:23 pm
David…the candor with which you write…in explaining…the diagnosis of…prognosis for…and treatements available…when you are told it is cancer…coupled with your innermost thoughts…feelings…and fears…while continuing to be a caretaker… decision maker…loving and supportive husband…and father… filtering all that needs your attention…is an incredible example of…and testimony to… those footprints in the sand…that are holding you up… in love and grace…while He is still cradling Laura…in the palm of His hand.
You are part of an incredible family…and this journey of yours…and its remarkable lessons… in how to love…and live…and accept what we cannot change…as we give it our best effort…as we go forward…one day at a time…has been inspirational…and you have touched… many hearts…and we are all praying… for your family.
God bless all of you….and kiss Laura for me.
With my prayers…
11 Donna Casey // Sep 25, 2008 at 7:15 pm
continuing to hold all of you in prayer
12 Rocky // Sep 25, 2008 at 10:31 pm
David,
Nobody could ever possibly do more than you have done,continue to do around the clock, and will continue to do in the future.
You are truly a loving husband and father and your family is extremely blessed with your loving,caring deeds.
Sincerely, Rocky
13 Pat // Sep 26, 2008 at 4:02 pm
David and Laura:
I am a neighbor in Blue Ridge Summit, PA, and remember meeting you at the mountain home of Anne and Paul. In the past year, Anne shared your URL.
I admit I haven’t had many chances to visit, but I happened to do so yesterday. Your post reminded me of the cycles of life and death my family experienced ten years ago when my father died at home after fighting colon cancer.
While I don’t know you very well, you are clearly doing an incredible job of taking care of your family one step at a time.
I wish the best for you.
Pat
14 Friend of Heathers // Sep 27, 2008 at 12:35 pm
I don’t know you but I am a friend of Heathers.
I just wanted you to know that even people who don’t know you are praying for you and sending you good thoughts and energy… I know that doesn’t make things better or easier but just maybe it will bring you a little bit of comfort to know that you, laura and the girls are being thought of and prayed for.
15 Eddie // Sep 27, 2008 at 10:46 pm
All that can be said is that where love is present, there is life. And a good life, to be precise. I constantly think of you all and want to tell you that your love for each other is an example to all.
I’m very happy to know you and love you very much.
eds
16 Another Friend of Heathers // Sep 28, 2008 at 10:41 am
I had the pleasure to meet Laura a few times, and always thought highly of her and it was an honor to know her…even if it was for a little bit.
I can’t even begin to imagine the journey that you, Laura and your daughters are, but I continue to keep you all in my thoughts and prayers.