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.
Leptomeningeal carcinomatosis
Sat, Jan 26th, 2008 1:02am by dkulp
Tags: Uncategorized
35 responses so far ↓
1 John Tuttle // Jan 26, 2008 at 3:14 am
Very unfair indeed, David. Laura is doing as well as she is largely because of you. And for all of the sobering news you have to report, you always seem to line it with hope and perspective. That’s good for us, good for Laura and good for you.
2 Kathleen Mullins (Barry) // Jan 26, 2008 at 9:07 am
David and Laura, David you have never met me and I am not sure if Laura will remember me, however, I attended St. Mike’s with her sister Heather. Heather and I were grade school friends and have recently been back in touch. I am so sorry to hear of this horrible cross that your family is carrying. Your posting is so inspiring however, filled with facts about what your family faces, but also with tremendous hope and grace on how your family will decide to deal with this. The two of you are an inspriation and I am sure that your children see that, are inspired by it, and ultimately feel safe because of it. I pray that no matter what decisions you are faced with in the coming weeks that God is with you through it all. You and your family will be in my prayers. God Bless, Kathleen.
3 Brooke Norton // Jan 26, 2008 at 9:33 am
We are thinking of you – sending you warm thoughts and lots of love.
4 Julia Munemo // Jan 26, 2008 at 9:55 am
David, you are an incredible man. Your children are lucky to have you. Please tell Laura that we’re all thinking of her and sending her love.
5 Aunt Cathy // Jan 26, 2008 at 10:26 am
We are devastated by the news. Hoping against hope that this was not to be. No prayer is said in vain. Our prayer will be that you and Laura will be guided and directed to the right decisions for all of you. May you continue to be strong for Laura and her advocate. Let the rest of us be strong for you and the girls.
I fear I would be an emotional burden if I called. Wouldn’t be able to speak the right words or offer any comfort. I’m much better written than I am orally. God bless.
Love,
Aunt Cathy
6 Trish Alexander (Concepcion) // Jan 26, 2008 at 11:13 am
Hello David and Laura,
I went to grade school with Heather at St. Michael’s. The last time I saw Laura was a few years back with her Mom at Whole Foods in Vienna. Remember, Laura? I think you may have been pregnant then, and Heather was not married at that time. I am devastated to hear this news and feel that this is just all so unfair! Quite honestly, I’m at a loss for words and right now am struggling as I type. Yes, I agree that your decisions are not black and white. I pray that you come to the right decisions, and I pray and hope for a turnaround as all of us pray to God and cry from the deepest parts of our hearts and being that all this hurt and illness please goes away. Laura and David, you are both so strong! Thank you for sharing your life through this website. My many, many thoughts and prayers are with you both and the girls.
Take care,
Trish Alexander (Concepcion)
7 Lindsey Harrod // Jan 26, 2008 at 12:17 pm
We are all praying for you…I can not imagine the difficult decisions that you are going to have to face in the near future. Until then, know that you have many family members thinking of your family everyday…God bless you.
Love,
The Harrods
8 Patrice Connolly // Jan 26, 2008 at 1:04 pm
I am in the Christian Mother group at St. Michael’s Church in Annandale, where Laura’s mom is a member. I just wanted you to know that our group of mothers has been praying for all of you and will continue to do so.
9 Ada & Aunt Rhonda // Jan 26, 2008 at 2:06 pm
We want you to know that were thinking and praying for you all. We will be praying for you both and the decisions you face. Love, Ada
10 Van Strength // Jan 26, 2008 at 2:33 pm
Hi David and Laura,
I went to grade school and high school with Heather and in my mind, Laura is still in the 5th grade. The news was a shock to all of us. I hope you all have the energy to do something really memorable, something that makes you all laugh and appreciate being together. You are all in our prayers.
11 donna casey // Jan 26, 2008 at 3:12 pm
There are just no words,but as you can see from the above comments you and your family are wrapped in love and prayer. The Caseys continue to pray also.
12 Shannon and Madison Coleman // Jan 26, 2008 at 3:25 pm
Your family is in our prayers.
13 Stanley Karel, Terri and family // Jan 26, 2008 at 4:26 pm
David and Laura,
Our hearts are broken as we read the latest on Luara’s condition. Just know that we are thinking of you and praying for you and your family. We love you…. Stanley Karel and Terri
14 Anita Culosi // Jan 26, 2008 at 7:15 pm
My son Sal and Heather were classmates at St. Michael’s and I received an e-mail from Heather a while ago about Laura’s illness.
I have been keeping Laura in my prayers ever since then.
I saw Natalie at Mass last week and I wanted to stop and ask her how Laura was doing, but as she was sitting in the first pew and I was coming back from communion, I didn’t get the opportunity.
Please know that our family will keep Laura, and the entire Coleman family in our thoughts and prayers.
May God ‘s blessings and an abundance of His graces guide you in making the best decisions and choices as you go forward at this most difficult time.
15 Danny and Deborah Hupp // Jan 26, 2008 at 11:01 pm
David & Laura,
We are friends of Elena since her college days at George Mason. During these past months, our family has prayed for the entire Kulp/Coleman family. Elena has kept us informed of Laura’s courageous battle with cancer.
In reading your journal, you are expressing your true love to Laura and helping us understand how Laura is fighting this horrible disease. We will continue to pray for you four!! Again, God Bless you all.
16 Tree and Dave Paccassi // Jan 27, 2008 at 11:20 am
We are friends of Elena from GMU and have been praying for Laura and your family since everything began. We will continue to pray and add Laura’s name to some prayer chains in our area. We will ask God to heal her, to strengthen and guide all of you and for many, many opportunities for laughter and joy in the upcoming months. God bless you, all.
17 Teresa Wilkison // Jan 27, 2008 at 1:16 pm
David and Laura,
We haven’t met, but my neighbor and one of my dearest friends, Janice Everett ,shared your blog with me when you first started it. She often speaks of you and your daughters. I am also friends with many of your relatives. I go to church with them in Ragtown. I just want to let you know that through this blog your family has touched the lives of so many people. Many of them are like me and haven’t even met you. Our entire church and community are keeping you in our prayers. God is able to conquer even the most insurmountable odds. Thank you for caring enough to keep all your family and friends updated through this blog site. May God bless your family.
18 Barbara Dubeck // Jan 27, 2008 at 2:19 pm
Dear David and Laura,
Laura, you may remember me as Ruby Gottlieb’s nana. We spent an afternoon in Look Park together with the girls. Jennifer has kept me updated on your illness. I want you to know that my heart is filled with admiration and sorrow: admiration for your incredible courage and insight, and sorrow for what you are going through individually and as a family. Jen and I saw Lily in Shelburne Falls last week. We had fun making peace birds together. I want to add my voice as someone in the community who is sending loving thoughts to you all.
Barbara
19 Eddie Pasa // Jan 27, 2008 at 2:31 pm
Guys,
We love you all here very much. Hope to somehow or another see you soon.
“Be good. And if you can’t be good… don’t get caught.”
eds
20 Karuna // Jan 27, 2008 at 3:12 pm
David & Laura,
What sobering, sad and not entirely unexpected news. The decisions you are now facing are huge, and I hold you all in the deepest peace and clarity for what you are facing.
I know your girls are seeing and feeling the deep Love in all this pain, and will have that deep Love, strength and inspiration embedded on their hearts forever. That is the unfathomable paradox of Life… pain and Love, Joy and Hope, laughter and tears must exist together.
May you each be held in the Light and Love of the Divine as you continue walking this path, separate and together. May the Love of all who are holding you in their hearts and prayers, infuse you with even more strength. And May you continue to see the beauty in all the is.
With much Love & Blessings,
Karuna
21 Macey Faiella // Jan 27, 2008 at 6:39 pm
Please know that you are always in my thoughts. I don’t have the words to say how sorry I am that this is happening to your family.
With much love,
Macey
22 Donna Chastain // Jan 27, 2008 at 6:57 pm
David and Laura, we hoped this news would not come but since it has we pray for you and your decisions you are faced with making…I think Karuna said it best…pain and love, joy and hope, laughter and tears must all exist together…we just never know how we will experience each one until we go through a situation…we love you and pray God will give you the strength you need daily…all our love, Calvin and Donna
23 Suzy // Jan 27, 2008 at 8:44 pm
Dear David, Laura, Naomi and Lily,
You are in our thoughts. We are thinking and praying for you all.
My mind runs through many memories that I have of you both….David being stuck out in Dillard at William and Mary….Laura wearing those men’s shoes that were about 5 sizes too big…Laura driving stick shift for one the first time while we drove cross country and David living in that little red house on Scotland St. in Williamsburg standing at his fridge saying, “they think making honey is exploiting bees?!?!”
One thing that I remember about Laura is that she always insisted on walking me home if we were out late. I would say, “but Laura, that means that you have to walk alone after you drop me off.” She never had a good answer for that.
You all are in my thoughts and thank you so much for the updates. I check the blog several times a day as many other people do I’m sure. Thank you for keeping us updated, David.
24 Jane McCool // Jan 27, 2008 at 10:01 pm
David and Laura, please know that you, your children, and your families have been and will continue to be in my prayers. You have been so strong through all of this and, in spite of negative reports and prognoses, you have managed to hold on to such hope and remain so positive. You have been such an inspiration to me and to many. Be assured of my continued prayer as you and your families walk this journey that God has asked (for whatever reason – one that He alone knows), you to embrace.
25 Tom Duesterhaus // Jan 27, 2008 at 10:01 pm
Dear Laura, David, Naomi and Lily,
I’m sorry to hear the news and sorry to be so late in telling you that I’ve been thinking and praying for you. I will keep praying.
Love,
Tom
26 Linda Murphy, a friend of Karen's // Jan 27, 2008 at 10:40 pm
Ever since hearing of Laura’s diagnosis from Karen, my family has kept her in our prayers. I’ve been a lurker just following the updates on Laura, you, and the kids but felt moved after reading this last post to come forward. I will continue to pray for all of you. Linda Murphy
27 Chris and Candace Coleman // Jan 28, 2008 at 6:30 am
David and Laura and family
Just wanted you to know that you are in our thoughts and prayers. The decisions you have to make in the coming days are harsh no doubt. We pray that God will comfort you during this time.
David thank you for taking the time to keep us updated. Please give her a hug and a kiss on the cheek from me.
Love,
Chris
28 Rocky // Jan 28, 2008 at 2:34 pm
I cannot begin to imagine what you are going thru,thinking,enduring right now. God is ALWAYS at our side to help us and to comfort us in times of need,if we ask. I can only pray for his miraculous healing,if that be his will,guidance, and support for all of you.
I care very deeply about all of you,now and always.
With Much Love,
Rocky
29 Leslie Jividen Luxenberg, friend of Karen's // Jan 28, 2008 at 3:34 pm
David and Laura,
I remember you two coming by our apartment on Capitol Hill when you were still in college. That’s a lot of years of love for each other . . . and it sure shows now like never before.
Just wanted you to know that our family & friends are praying for you all, as well, and lifting you up to the Source of all power, strength, peace and love. In the depths of your harsh winter realities, may you feel the warm love of so many embracing you and holding you dear.
Leslie
30 Katie Allston // Jan 28, 2008 at 5:23 pm
There are no words… many prayers and hopes are being sent your way.
You all are always with us…
Katie (and family)
31 Weldon Barry - St. Michael's // Jan 28, 2008 at 5:56 pm
Dear David and Laura, My prayers are with you both and my only advise to you is to trust in GOD and remember also that nothing is impossible with God!! love, Weldon
32 Brandon and Misty Everett // Jan 28, 2008 at 8:18 pm
David and Laura,
We just want you to know we love you all and are praying for you. We feel extreme sorrow for you and your family.
Huge hugs and love,
Brandon and Misty
33 Dickie and Ginny // Jan 29, 2008 at 9:59 am
Laura and David, Our thoughts are constanly with you and your family. We check your blog several times a day. Thank you for sharing your joy and your pain. we pray God will guide you in all things and give the peace that passes understanding . Holding you in love and prayers, Uncle Dickie and Aunt Ginny
34 Dickie and Ginny // Jan 29, 2008 at 10:08 am
Laura and David, Our thoughts are constantly with you and your family. Thank you for sharing your joy and pain. We check your blog several times a day. We pray that God will guide you in all things and give the peace that passes understanding. Holding you in love and prayers, Uncle Dickie and Aunt Ginny
35 Linda Navarro // Jan 29, 2008 at 5:14 pm
Laura and David-
Though we’ve never met, I’ve been following Laura’s progress through Heather. I was terribly saddened to hear the latest. Please know, our prayers and those of our family and friends include you. I don’t think there is much I can say that hasn’t already been said more eloquently, but I did want you to know that yet another community knows of and is praying for you. I also wanted to say that I know others who have experienced miracles in more desperate circumstances. I pray for that for your family.
Sincerely, Linda Navarro