Loose Strife is an online journal by David Kulp. During 2007 and 2008 it was a place for updates about Laura Kulp as we all dealt with her troubles with breast cancer. I don’t know what will become of this website in the future. Feel free to leave comments to my posts. You can contribute to my catharsis.
- Our contact info is:
- (Lily, Naomi, or David) Kulp
183 Phillips Rd,
Shelburne Falls, MA 01370
email: dkulp@dizz.org
(For non-postal deliveries by carrier services (UPS, Fedex) only, our town is actually Ashfield (183 Phillips Rd, Ashfield, MA 01330). Regular US postal mail should be sent to the address above (Shelburne Falls 01370). )
Click on the icon below, enter your phone number and Google Voice will connect us up by phone.
Loose Strife – “to let go of conflict”
Laura and I were planning to start a small business that was to include growing cut flowers for local markets. Loosestrife is a pretty flower, but an invasive weed. Managing weeds is like managing metastatic cancer: you can never get rid of them all, but you can work hard to keep them at bay, make peace, and still have a beautiful garden — at least that’s my plan.
Laura’s brief cancer history
At the end of June, after having persistent back pain for several weeks after we moved to our new house, Laura went to the doctor. While there, she asked about swelling in her breast. This led to a series of tests, which led to a biopsy/lumpectomy and that tissue was found to be invasive ductal and lobular carcinoma (ER+/PR+/Her2-). Bone and CT scans followed and on August 8 she was told that she had metastatic (Stage IV) breast cancer that had spread extensively to her bones, predominantly in her spine and pelvis, and there was evidence of cancer in the pleura and pericardium. The pericardial effusion quickly worsened, causing stress on her heart, so she had a “pericardial window” to permanently drain the fluid. The removed tissue and fluid were positive for breast cancer.
Laura had a lot of back pain due to a compression fracture in one of her vertebra and larger cancer deposits in her pelvis. These areas were irradiated. In addition, she receives a monthly bone strengthening IV injection to help fight cancer progression in her bones and rebuild bone where cancer cells were.
Because her type of breast cancer is supposedly hormone dependent (based on her breast biopsy), she was put on two hormone drugs, Tamoxifen and Lupron, in August that were intended to reduce the availability of estrogen to the tumor cells. However, after seven weeks the hormone treatment was discontinued because cancer progression was observed in a new set of CT scans. In addition, tumors in her ovaries were found.
Around the beginning of October, Laura was switched to a chemotherapy (“AC”) administered every three weeks, which she completed in January when she reached the maximum dosage and heart damage was detected.
The chemotherapy and radiation therapies successfully reduced her pleural effusion, eliminated her back pain, and resulted in a blood-based cancer marker dropping almost to normal levels. However, from September to December her quality of life worsened dramatically as she suffered from severe depression, loss of appetite, and major fatigue from chemotherapy, narcotics, and uncontrollable vomiting.
The vomiting was never controlled, but a CT scan of the brain seemed to discount a neurological cause. In December, Laura began experiencing multiple, daily, debilitating headaches as well as lightheadedness that sometimes resulted in blackouts and falls. She was admitted to the hospital in mid-December at the nadir of her bad symptoms. A brain MRI revealed no abnormalities, but the stay did result in a comprehensive treatment of depression, diet, pain, headaches, etc. and by the beginning of the New Year she was in much better condition having successfully responded to anti-depressants, stopped taking narcotics, and returned to normal eating. However, her serious headaches, lightheadedness, and related symptoms remained.
In mid-January she had a lumbar puncture (spinal tap) to check for cancer in her spinal fluid. Results were positive and well explained her persistent symptoms. Cancer metastasis to the spinal fluid is a rare complication of advanced cancer and even more uncommon for someone in Laura’s situation with relatively stable systemic disease, no metastasis to her brain, and in relatively good physical shape. Nevertheless, spinal fluid mets has a very poor prognosis and treatment options are very limited in their efficacy.
At the beginning of February, Laura began working through the difficulties of dealing with the possibility of death and the trade-offs for various treatment decisions with respect to survival, risks, symptom management, and quality of life. Laura began whole brain radiation treatments, but she stopped radiation as her condition deteriorated rapidly due worsening hydrocephalus (increased spinal fluid pressure) caused by cancer. Instead she chose to have a shunt surgically placed into her brain to relieve the pressure. The results were immediate and dramatic. After the surgery she completed her radiation treatments.
She felt so good that the whole family took a trip to Hawaii, California and Virginia in March. Until mid-April, Laura continued to be free of any acute neurological symptoms, but by the end of the month she was having troubles walking in both legs, which couldn’t be attributed to her broken leg alone. Spine scans early in April showed no tumors and a brain CT was clear. But during the last week of April her walking deteriorated rapidly and she went to the ER on May 2, able to barely walk with a walker. A new spine MRI showed clumping of the nerve roots in the base of her spine.
She was in the hospital for a week and began radiation treatment. After two weeks of radiation her walking and climbing significantly improved, but she still required a walker and spotter. She began a new chemotherapy treatment of Xeloda and Avastin and her mobility continued to improve. After two months, she could walk normally and unassisted. Her dramatic recovery was completely atypical, unexpected, and very welcome.
In July Laura started to experience symptoms of progression again (vomiting, headache, unsteadiness) that continued to worsen until she was hospitalized at the beginning of August for a week. Steroids controlled her headache and vomiting, but a host of new troubles arose including permanent double vision and a loss of muscle control in her face that keeps her from chewing, swallowing easily, or talking clearly.
A difficult week in the beginning of September triggered a decision to move to in-home hospice care, which makes managing her symptoms, medicine, and household logistics easier. By the end of the month, vomiting returned and numerous signs of decline set in including much reduced eating and drinking, weight loss, pervasive sleepiness, and disorientation.
Laura died on October 5, 2008.
23 responses so far ↓
1 Janice Everett // Sep 13, 2007 at 9:52 am
Thanks for creating the blog, this will be a good way for all of us to stay informed and follow your family along as Laura is being treated. We pray for pain relief, response to treatments , minimal side effects and remission..love Janice
2 Angie Fannon // Sep 13, 2007 at 1:01 pm
The blog is a great way to keep each of us informed about you and your family. Our family wants you to know that you are often in our thoughts and always in our prayers. We are praying that you will find the courage you need to fight this disease from the love and support of this great family God has blessed us with. Sending you love and support…….Angie
3 Karen Grumbles // Sep 13, 2007 at 4:34 pm
David, thanks for constructing this blog to help us stay connected to all that is happening with your family. Our thoughts and prayers continue with Laura and you and the girls ….. Love, Karen
4 Donna Chastain // Sep 14, 2007 at 9:29 pm
David, Laura and girls, you are so blessed to have each other. Laura, I’m sure David is your “Rock”. He has a lot on his plate but I’m sure he would have it no other way. Thank you so much for keeping us all informed about what’s going on. Please know you are in our thoughts and prayers always. I love the picture up top.Love, Donna C.
5 Stanley Karel, Terri and family // Sep 15, 2007 at 10:04 pm
David and Laura, Thanks for sharing your family’s “happenings” with us. What a great way to help us stay “connected”. We appreciate you updating us on Laura. Please know that you all are in our thoughts and prayers daily and we send our love and support. What beautiful little girls! Take care….Love, The Chastains’
6 Missy Jaffe // Sep 19, 2007 at 10:53 pm
Laura, David and girls, We recently heard of Laura’s cancer and our hearts are with you all. Laura, celebrate your life. Everyday is a blessing! I’m sending the blog info onto Jenn and Fr. J.D. Sid and I want you to know we care about you and your lovely family and are grateful for the blog to keep in touch. Please know that you are in our hearts and prayers daily. Love, Missy and Sid Jaffe
7 Carolyn Urban // Sep 26, 2007 at 9:15 pm
I hope it’s ok I ended up here…I just received the email link from Chris Nidel. I want you all to know you have been in my prayers, and will continue to be in my prayers. I initially heard about Laura’s cancer from Casey Kowal, when I was visiting her in London in August. Although I didn’t quite know Laura as well as Casey did, I did know the rest of the Coleman family. Please also let them know I am praying for them as well.
I just want to commend you David, on this wonderful website – a powerful mixture of everything.
Carolyn
(from St. Michael’s)
8 Rommy (Kevin's Wife) // Sep 27, 2007 at 12:41 am
Hey guys, just wanted to let you know we subscribed to this site so we can stay up to date on everything that is going on with your family. I also wanted to pass along two websites that I found in Parents magazine. The first site, http://www.toddlerplanet.wordpress.com is a blogspot for a woman who calls herself Whymommy and she basically blogs about her daily battle with breast cancer. She is a former scientist, stay at home mom of a 3 year old and 6 month old. I thought maybe Laura may want to take a look at it. And the other site is called http://www.savethetatas.com, and its pretty self explanatory…they sell apparel to support the fight against breast cancer, something for Lily and Naomi to sport.
We hope you know that your family is constantly on our minds and in our hearts. Give those gorgeous little girls hugs and kisses from all of us.
-Rommy,Kevin,Jonah, and Ethan-
9 jimmy gapinski // Oct 1, 2007 at 12:42 pm
hi laura, david, & family,
just a note to say you’re in our thoughts & prayers… stay positive!
jimmy gapinski
10 Darby Falls // Oct 26, 2007 at 9:28 pm
Hi Laura: Keep up the fight. I have been on and off Chemo since my son in 1998 every 7 weeks. Kiss those kids for me. Love, darby
11 Mary Pat (McDonough) Julian // Nov 8, 2007 at 1:13 am
Hi Laura & David and family,
I was a classmate of Laura’s at St. Michael’s ages ago and sadly heard about her battle with cancer via e-mail from her mom recently. I just want to let you know you are all in my thoughts and prayers. I was diagnosed with ovarian cancer one week after my third son was born (three years ago now) and thankfully after treatment at Johns Hopkins I’m doing well. While all situations are different, I know how tough it was for me and my family — but I’m so happy to read your blog and see what a supportive, amazing family you are! keep up the good work — and let those adorable girls give you all lots of joy during such a difficult time. Aren’t kids just the best distraction?
Take care of each other!
Mary Pat
12 Linda Tropp // Dec 21, 2007 at 4:58 pm
Thanks so much for setting up this website and providing updates about Laura’s condition and how all of you are doing. Please know that you’re in my thoughts, and I’m wishing you all nothing but the very best in health and happiness for the new year. Linda
13 Julie Asada // Dec 28, 2007 at 3:44 am
Laura & David
Thank you for the Christmas card. Lily and Naomi are so beautiful!
Laura, may you find the strength to meet each day with grace. You are in my thoughts and prayers.
I’ll email soon with Megan’s address and phone.
Take care,
Julie
14 Karuna & Loren // Jan 8, 2008 at 10:14 am
Dear Laura, David, Lily & Naomi –
We were so thrilled, then so shocked to receive your card and update. Lily & Naomi are so beautiful and look so much like the two of you. We have so appreciated the cards and updates over the years.
Laura, I am heart-broken at the news of your illness, and am writing this in a kind of stunned sadness for you and David and the girls. As with many other friends, you all are in our prayers. I also know that the strength you embody, even in this very difficult time, will carry you. No one knows the reasons, nor the outcomes, nor the lessons at a time of such great pain.
May the joy of your girls, the beauty of the world, and the Love of the Divine in every one of us hold you all, as you travel on this momentous journey.
With so many blessings and Love,
Karuna (& Loren)
15 Richard and Yvonne Squeri // Jan 9, 2008 at 12:41 pm
Dear Laura, David, Lily & Naomi,
We don’t know each other, but we do.
Yvonne and I have two close friends involved in this battle which is so personal yet, far too “normal” for us all.
We send you our love, thoughts and prayers and ask for the outrageous;
A complete healing of all you, in all the forms that can be; body, mind, & spirit and /or
any of those, which must be.
Namaste, Dear People,
Richard for RS and Yvonne
16 Karen (Pearse) Apgar // Jan 10, 2008 at 1:26 am
Dear Kulp family —
It’s been at least 30 years since I’ve spent any time with Laura (we went to kindergarten together at Masonville!), but our families have remained in touch forever…
Just wanted to add my prayers, positive thoughts and love from Oregon.
-Karen, Brian, Sophie & Emma Apgar
17 Jen Courtney-Keyse // Feb 21, 2008 at 1:10 pm
I think of you all every day and send all of my prayers and best wishes to you.
I love you very much.
Jen
18 Kate (Stanford) McCown // Mar 24, 2008 at 1:20 pm
Hi Laura,
This is Kate, from St. Michael’s grade school. Hilary (Holmes) Anderson recently told me about you and your illness and I’ve had you and your family in my thoughts and prayers. She just sent me this link today and I am amazed at what a strong person you are and what a great family you have. Your girls are so cute and look so much like you. I thought you looked really beautiful in your pictures and still as cute as you were in 8th grade! I was also happily surprised to see so many St. Mike’s people sending you notes (including Mary Pat and Jimmy). While we never knew each other that well during grade school, we still have a strong connection. I will continue to pray for you and send my love.
Kate (from Bryn Mawr, PA)
19 Ali // Apr 10, 2008 at 9:02 am
Have a WONDERFUL birthday!!!! I’m trying to get up there soon! Be well! 🙂
20 me, wag. » Blog Archive » “Life’s good… but not fair at all.” // Aug 22, 2008 at 11:12 am
[…] are the true center of her universe. Those of you who know Laura are probably already tuned in to the remarkable blog Dave maintains; those of you who aren’t… you really should be. It’s tough […]
21 Caroline (Ledbetter) Purohit // Sep 8, 2008 at 3:25 pm
Hi Laura & Family,
I was friends with Laura at St. Michael’s and O’Connell. I have very fond memories of our friendship together. I was very sad to heard about Laura’s health from mutual friends, the Keums. I was glad to find out about this blog through Hilary Holmes so I can keep informed about Laura’s condition. Laura and her family are always in my thoughts and prayers.
I happened to run into Laura’s sister, Heather, at Potomac Mills a few years ago and was able to reconnect her with my sister, also named Laura. I also ran into Mrs. Coleman at the Fairfax Wegmans over a year ago too. It’s such a small world sometimes.
I am so glad to read about all the loving support Laura is receiving from her family and friends.
God Bless You all during this very difficult period.
Caroline, Eric, Hailey (4 yrs), and Evan (2 yrs) Purohit
22 Erin McGee Turner // Oct 5, 2008 at 12:44 pm
I am so sad to hear about Laura’s death. I had not seen her in over 20 years and just learned about this website today from Cristina Pasa on Facebook.
I have wonderful memories of Laura from St. Mike’s Church Youth Group. She was always full of smiles and positve energy.
Thoughts and prayers go out to her family.
Erin
23 music note: lullaby | ccs ferguson library // May 18, 2011 at 7:57 pm
[…] If you’re interested in learning more about my friend Laura, there’s a summary of her illness on this page of the blog that family and friends used to follow her progress: http://loosestrife.org/about/ […]
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