Crowdsourcing my mom’s cancer

My mom has always been our clan’s chief information hunter and learner.

That is, until last week, when she was diagnosed with a rare cancer: Waldenstrom’s macroglobulinemia.

Mom was a medical research librarian – someone who delighted in being a generous resource for journalists like me.

mother and child

Mom and me in November, 1955

I remember her describing the day in 1981 or 1982 when a reporter called her to ask for information about a newly identified disease with an odd name: Acquired Immune Deficiency Syndrome. Mom checked it out, learned about it, filtered and curated the information, then delivered it to the Miami Herald reporter, likely following up with photocopies in the mail.

She beat me to the Web, of course. In 1992, while we in newsrooms were still bound to “dumb” computer terminals on a tightly controlled Intranet, mom was putting the University of Pennsylvania Biomedical Library on the Internet and later to the World Wide Web.

By the time I went online-only in 1999, it was old hat to mom, who had taken early retirement and was on the way to important things, like earning her Master Gardener’s certification. She told me she missed the calls from reporters, many of whom had learned to search for themselves, traversing the magic Web that connects people and information.

Last Tuesday, she told us she’d been diagnosed with Waldenstrom’s. She was terrifically relieved the doctor had ruled out Multiple myeloma, the cancer that killed her closest brother. But she didn’t know much more.

“I just don’t have the energy to do the research on this one,” she said.

So the junior apprentice medical research librarian team went to work: Find, learn, filter, curate and report back, in language comprehensible to normal mortals.

My wonderful sister-in-law, Mary, went for the building blocks and found the “what” of Waldenstrom’s here.

When the oncologist said mom should immediately begin chemotherapy on Rituxan, my favorite uncle raised warning flags: He found the widely used and astonishingly expensive drug is under FDA scrutiny after being linked to dozens of deaths, as this Wall Street Journal article discusses.

Fortunately, mom has both “the public option” – Medicare – and private health insurance, so she has choices on treatment.

So I went to find the “where,” and the “how” for the best possible care. My reflex was to bring her to University of Texas’ MD Anderson Cancer Center, in Houston – not far from our home in San Antonio – where fabulous doctors successfully treated my uterine cancer in 2006. But my parents are in southern New Jersey, and that’s a long hike from Houston. Another option would be the Mayo Clinic, but the closest facility for her is in Minnesota.

On Friday, I found the Bing Center for Waldenstrom’s Research, under the umbrella of the Dana-Farber Cancer Institute in Boston. It looks to me like the best and closest option for her, at just about 300 miles and 5.5 hours, as the car flies. I will be setting her up for a second opinion and potential new patient status today.

Now here’s the part where my friends who are journalists, research librarians, and just dogged diggers can help: What else or where else should we look for? Is this the best option? What do you know?

And Boston, it looks like my mom is on the way. You be good to her, OK?

Afternote and update: Mom has always been a rebel, and proudly posted a sign in one library that said “No Silence.”

Please take that as a cue to talk among ourselves in the comments, on Twitter and in email!

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15 thoughts on “Crowdsourcing my mom’s cancer

  1. Charlotte Anne, what a heart break. Your mom is lucky to have such a caring daughter at such a time. Blessings on your entire family. ke

  2. i assume you have all her and your “favorite” stories recorded already. exhaustion can be a big factor for her and her care givers so some sort of plan for this might be good…and of course an extra pair of ears at all doctor consultations are good (I even recorded the discussions with my mom’s doctors at mayos because sometimes i realized i had not truly “heard” everything)…I believe in the power of connected friends so you are already on top of that. i am thinking of you EVERY day. ardyth

    • Ardyth –
      What fabulous advice!
      My dad will be going with her, and I will arm him with a recorder, because you are right, none of us hear everything!
      Thank you so much,
      C-A

  3. Charlotte-Anne,
    I happened upon your blog via a news-feed service I use via Google. I’m a fellow “wallie” as we call ourselves, having been diagnosed with WM since 2003. There is yet another great source of information you may wish to avail yourself of…the International Waldenstrom’s Macroglobulinemia Foundation (http://www.iwmf.com – we’re currently working on revamping the website). They have a wealth of useful information on their website, but also if you contact their home office in Sarasota, Florida (941-927-4963) or send them an email at info@iwmf.com, they will send you what they call an “info-pak” for the newly diagnosed that has materials written by top WM research experts from Mayo, Dana Farber, MD Anderson, etc…. The IWMF is a volunteer-led cancer patient support and WM research advocacy organization that is very strong…we also hold Educational Forums each year for patients, where the top researchers discuss their latest findings and up and coming research on our disease.

    PS…Rituxan is considered by many WM’ers and NHL’ers to be a true “wonder drug”…the risk of brain infection is there, sure, but it’s very minimal.

    • Peter –
      How wonderful that you found me and what a generous help you are!
      I thank you and mom thanks you so very much!
      C-A

  4. I remember your mom as one of your news heroes, the tales of her “finds” near legend. I’ve sent your column to my favorite cancer research hero to see if he knows anything more, but it sounds like there are some stellar sources weighing in here. Therefore I add only that she and you are in our thoughts and prayers.

  5. Hi there. I can’t add much to the discussion on Waldenstrom’s but I can add that I’m an 18 yr Hodgkin’s survivor. I live in Boston and have friends at Tufts Med Center and Dana Farber. If you need any logistical help while in Boston, please let me know.

    AC Staley (@stales on twitter)

  6. Charlotteanne,
    Your mom should prepare for an interesting and sometimes exciting journey. Peter DeNardis has already given you good advice in his reply, please do visit the IWMF at http://www.iwmf.com, where you will find a wealth of information on WM. Peter and I both serve on the Board of Trustees for the IWMF. I’ve found it to be a rewarding experience. You can read about the board on the web site, and can receive a lot of other information. Look under Publications and you’ll find a number of booklets you can print out, as well as our quarterly newsletter, The Torch. You will also find a list of Support Groups that you mom might want to contact should she be interested in the group interaction. Seeing others thriving and “looking good” with WM is uplifting.

    Best wishes to your mom, and to you. If there’s anything I can do, or if you have questions, don’t hesitate to contact me.

    Bill Paul
    IWMF Treasurer
    Memphis, TN

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  8. Hi Charlotte Anne,

    @stales brought this blog post to my attention on Twitter.

    WM is indeed a rare form of NHL. If your Mom is in S NJ, she is very close to one of the top NHL doctors in the US, who is at Presbytarian in New York, Dr Own O’Connor. You can find his details here: http://nyp.org/FPHTML/1196172905815.html. I would highly recommend him.

    Rituxan, like any cancer therapy, has risks associated with it, but it has also proved to be a very successful treatment for thousands of NHL patients, many of whom had little hope before it was available.

  9. I would recommend Thomas Lodi MD. He is a holistic MD with I think a very high survival and thrival rate. His patients thrive when they are healed. They come out healthier than before their diagnosis. http://www.anoasisofhealing.com. Watch his you tube videos also

    Blessings,

    Dan Topkis, MS

  10. I went through two treatments of Cladribine chemo in 2004 when diagosed.

    In 2012 Feb I had the four treatments of Rituximab which can only be given once. With that and lots of prayer I have regained my strength even tho the oncologist thought that I was dying in January. I’m 67 yrs old and would recommend prayer above all! I’ll remember your mom in prayer, too.

    We each have a day to be born and a day to die ( Ecclesiastis)

    Love from a Norwegian in Canada.

    Tina:-)

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