GrannyBarb

barbara lackritz, d 2003

Barbara Lackritz was diagnosed with CLL in 1989. Amongst her many subsequent achievements she founded the CLL list, an international internet discussion group. She became known throughout the world of CLL as GrannyBarb. Barb died in 2003.

Her own CLL story can be found on her website http://www.acor.org/leukemia/frame.html

A brief biography is published on this site, Granny Barb

This page is but a short collection of the many messages Barb posted to the list and is drawn from the early years. It is an affectionate tribute to a remarkable women.

23 Nov 1996 Her first message to the CLL list	Well it only took me since 1989, but we really do have our own list for CLL. I started looking for it when first I was diagnosed, and have been looking ever since. On the way, I created GrannyBarb's Leukemia Links, which have now been merged with Art Flatau's to create---don't giggle at this one---GrannyBarb and Art's Leukemia Links. New URL in my signature line. Don't we sound like an arts and crafts show? Then we established Hem-Onc, because people felt that a list about Leukemia would be too narrow, and hem-onc is now over 1000 strong. Enough of us were complaining that there was too much reading and there were several requests for just CLL information, so finally, CLL exists. My story is on the web in two places: http://www.acor.org/diseases/hematology/Leukemia/barb.html or http://walden.mo.net/~lackritz/barb.html It ends with me fighting a chronic sinus infection. Must update you to say that I"m going in for sinus surgery to clean out the sinuses and enlarge the natural "drainage ditches" on Tuesday morning. All good thoughts at that time will be greatfully appreciated. I want to welcome all of you who are charter members in the CLL club. ST. JOhns is having problems with it's equipment so I'll keep it short and sweet---we're so glad you have found us and that you're willing to throw your hand into this fledgling list. It isn't moderated, so it will be what we make of it. Thanks especially to my fellow listowners: Tony Bradford, Paul Cooper, and Tom McCune and to Sue Bennett our very own welcome wagon lady. We're here to help this list run so that you're satisfied with it. Cyberhugs to all, Grannybarb
23 Nov 1996	Dear Paul, On this side of the Atlantic having "a big stick" means having lots of power behind one. I don't know what it means in the UK, so "help!" You all know that this list is a labour (OK UKers) of love, and my way of returning to all of you the wonderful support and information you've shared over the years. Power-- I have none--except the power of a positive attitude and a huge determination that together and informed we can somehow beat this beast! Cyberhugs, Grannybarb At 09:29 AM 11/20/96 -0000, Paul Cooper wrote: >Hi to all subscribers on the CLL list, > >That's more than enough about me! I'd just like to welcome all the new >subscribers to the CLL list, and I hope that we can make it just as much a >success as Hem-Onc. We can't really fail with GrannyBarb and her big stick >behind us, can we! > >============================================== >From Paul Cooper in England, email: paulcooper@dial.pipex.com
30 Nov 1996	Dave, Those foot cramps and I are also old friends. I'm borrowing your MD's exercises starting tonight. I figure it can't hurt and if it helps I'm ahead. Cyberhugs, GB
3 Dec 1996	Dear Peggy, First, know that you're not alone in dealing with the bloodwork heebie jeebies. I have yet to meet anyone who doesn't get them. I've been known to run up my phone bill talking to net buddies on the eve of bloodwork, even though I know they're only a post away. It seems to come with the territory!
6 Dec 1996	Well All, As a result of the cultures done during my sinus surgery, the path report states that the sinus problems are a manifestation of CLL. GrannyBarb
8 Dec 1996	Dear All, At least you know your listowners are no better than anyone else. I"m so sorry for sending that personal message to Andy to the list as a whole. Mea Culpa! I forgot to check the address line. But at least I can use my own idiocy to teach from: Please snip off the parts of the message you're answering that are germane to your response (not as I did-including the entire thing). I know that's a pain when you're receiving the digest especially, but it makes scrolling through the digest so much more readable when it's done right. Another alternative is to send email to: listserv@sjuvm.stjohns.edu message: set CLL mail That will bring you individual mailings, not the whole day's list. It's great now that we're only around 100 members, but it may become too much mail for some of you, as we grow. Cyberhugs and apologies to all, Granny --the preacher teacher--Barb ;-)
17 Dec	Gary, Oh I do hope you asked your oncodoc about the fludarabine/cytoxan combo. There's a protocol out of MDACC in Houston as well as the Memorial Sloan Kettering trial. Barb >> Charles, GrannyBarb, et. al.: >> I've completed 7 cycles of Fludarabine without a lot of progress, >> and I'll be discussing what to do next with my Onc on Monday. I think >> he has in mind to keep going on Fludarabine, and hasn't mentioned >> Cytoxin. Could you tell me a little more about this protocol and the >> Sloan Kettering trial? I'd like to know whether or not to question my >> Onc about this as an option for me. >> Gary Sortun > >Thank you to whoever will take this one! > Gary
20 Dec 1996	Subject: When to provide Therapy for CLL, article Jay posted. A quick summary of the file Jay posted to me: Don't treat CLL unless the patient is symptomatic in more ways than just a high white count and has palpable lymphnodes. When you treat, treat with a plan in mind, and stop treating when the symptoms dissapear. The author (an MD unknown to me) says that there is nothing in the literature saying that continued treatment after symptoms abate will prolong life. Treat when lymph nodes are causing pain and/or disfigurement --not just when there is involvement of the lymph nodes. Treat if there is anemia Treat if there is thrombocytopenia Treat if the spleen becomes very much involved (large and painful). Treat if the lymphocyte doubling time in the bloodwork is less than six months. Treat if the disease appears to be transforming into something more serious: ie: Richter's Syndrome or other, more serious, forms of Leukemia Jay, that's all that came to me and it was a huge file. Your scanner is like mine! Sorry this took so long, and thanks, Jay, for reminding me about it. Grannybarb
13 Jan 1997	I had fludara for 5 days/ but the infusion took 20 minutes, so I definitely did it outpatient, and went to work next AM. Are you sure they're going over 24 hours? Either the dosage is being dripped very slowly or they're giving you massive doses. I go back on fludara/Cytoxan outpatient as of WEDNESDay after work, and plan to be working Friday and Saturday, and babysitting the grandkids for the week'end. Barb
15 Jan 1997	Dear All, You now know that I alwyas like to share my 2 cents. I'm the only cancer survivor in this generation of our family. However, my mother's sister died at 16, in 1929, from Hodgkins Disease in the days when they had nothing to treat it with. Do I believe in a genetic link.......it's difficult not to, but I sure don't want to have to worry about two daughters and a son and three grandchildren whom I adore. Cyberhugs, GrannyBarb
1 Feb 1997	Dear Art, A bit of sarcasm there? I can imagine what I'll be paying MDACC for my check-ups once the PSCT is over. And I have the same problem convincing them that the information they gather is also information that I am entitled to have. It often takes 5 and 6 phone calls until I rattle enough cages to make them understand that I won't give up until I have the information faxed to me also. Barb
13 Feb 1997	Dear John, I am likely going to lose my mind, but I still have my spleen, so I'm no help here.
22 Feb 1997	Those of us in the internet community who were fortunate enough to know Tony Bradford, have lost a friend, leader, mentor, and confidant. He tried to teach others what he had learned about living with this disease, shared information, lifted our spirits, and made others understand how to be optimistic in the face of a malignant disease. Tony, we'll miss you, but you'll live on in all the lives you touched and made brighter. GrannyBarb
8 Mar 1997	Hem-Onc seems to be fixated with grey elephants. I find us lots more creative. Hip, hip Hurrah for CLLers. Barb
25 Mar 1997	Pat, I'm an occasional wino....a social drink at mealtime. I can't say it hurts or helps, but it sure makes life liveable. Hugs, barb At 03:38 PM 3/25/97 -0400, you wrote: >Hi, > >I was wondering if alcohol intake(one or two drinks a day) has any good or >bad effects on CLL'ers? Anyone? > >Pat
10 Apr 1997	Tricia, I'm so gald you got the attorney involved. You now have showed them that you won't lie down and be stomped on. You've been a lady, you have a husband in ICU, you're being pushed out of your home, and all you did was get an attorney to tell them to expedite a check. I wouldn't be surprised, though, if I wind up with repercussions for >having called in an attorney. Wanna bet they lie low. The last thng they want is rotten publicity, and if you chose to play hardball, they'd look like the lowlives they are. Just a bit of media attention would be fatal to their case. Love, Barb
28 Apr 1997	My son lives in Mass and it appalls me that he's having bloodwork done by anyone who breathes.......This is the forward thinking Commonwealth of Massachusetts? To use an old, but appropriate expression: Ye Gods and little fishes.....what have we come to? Grannybarb --up on my soapbox and willing to pontificate for hours--but for the sake of my friends here, I'll be good and save it for my letters.
21 May 1997	I'll bet they want you to go for the allo, because you're still such a baby! Hope whatever decision you make is the right one. Hugs, GB
30 May 1997	Dear ALL, Did I miss a post from Paul? He's been too quiet since he posted the good news. Don't tell me he ran off to enjoy the good news..... whoever heard of doing that? Paul, if you're there and being an ostrich, please take your head out of the sand and say, HI! GrannyBarb
7 Oct 1997	Dear Carol. Fludarabine won't take your hair -- at least it never took mine. Of course now the shirt I wear says: I'm too sexy for my Hair. That's why it isn't there! (But Cytoxan did that!) GrannyBarb
6 Dec 1997	Congratulations Wayne! Now comes the worst part--getting through the results of the high dose chemo and radiation, but in the long run it's well worth the misery. Wishing you a successful transplant, and the knowledge that this is as hard on your lovely lady as it is on you. You live through it and are being cared for. She is watching you go through this Hell, and all she can do is worry and wait. Love to you both, Grannybarb
7 Jan 1998	Leisa, I'm rapidly becoming sylphlike---Irv likes it, but I'm concerned. Reason: my tastebuds are still nominal and things I think I'll like taste horrible all too often. I can't cope with salad dressings (too vinegary), and many sauces (and I used to adore French cooking), now I go for the simpler recipes....and even then I'm not really excited about food. I can't even get excited about chocolate--metal mouth afterwards is taking its toll on me. I"m almost 7 months post BMT, and I've yet to feel that my taste is "normal". GrannyBarb
1 Feb 1998	Dear Jill, Welcome to CLL. Sorry you need us, but we're delighted that you found us. Is Dad having any symptoms other than the high white count? Are his red counts going down, spleen enlarged, lymph nodes enlarged? Is he having night sweats? bone pain? etc? I ask because the literature shows that you don't treat CLL unless its symptoms become annoying. High white counts aren't enough by themselves to make a doctor treat. When treatment begins, they'll probably put him on oral chlorambucil (Leukeran) and perhaps prednisone (a steroid). Another possibility is to put him on Fludarabine (Fludara) in conjunction with cytoxan or mitoxantrone. Those are the two standard treatments for CLL at present (although as you read the list you'll find that there're lots more interesting possibilities in clinical trials out there. If you haven't visited Leukemia Links,(URL in my signature file) please do and get the PDQ for CLL so that you have all that information at your fingertips. If you prefer, email: cnet@icicc.nci.nih.gov message: cn-101003 cn-201003 help That will get you the PDQ for CLL for professionals, the second one is the one for patients, and the help gets you a listing of everything that's available on cancernet. It's a goldmine of information. Best of luck. Your Dad is a luck man to have two children who are so interested in being informed. GrannyBarb
2 Feb 1998	Carolyn, You lose nothing by going for a second opinion...and when it's one of the top ranked cancer centers in the country, I'd go for it. Go visit Michael Keating. He's a wonderful man and very knowledgeable. Barb
5 Feb 1998	Carolyn, If the paltelets fall below 20,000 they will likely transfuse you with some lovely yellow ones. Barb
27 Feb 1998	Dollie, I"m so sorry we had to share pneumonia as you joined the list, but at least you know you're not alone in that either. Welcome to CLL. I'm sorry you need us, but I'm so glad you found us. Cyberhugs, Grannybarb
9 Mar 1998	Dear ALL, Welcome to the Lackritz marriage. I'm always too cold and Irv's always dripping. The night sweats are a symptom of CLL on the march. Every hem-onc asks about them. Once I had the BMT they disappeared and haven't returned. Instead I have chilly nights with three layers of blankets, two of clothing, and heavy Ragg socks to keep my tootsies warm enough. I can't get warm enough and the thermostat is at 70. Irv is still too warm, but I'm simply frozen. I think because I'm a little size 10 these days, my inner rheostat has changed its settings. Can't say this solves anything, but thanks for listening. Barb
24 Mar 1998	Dear Jan, At 07:22 PM 3/24/98 EST, you wrote: >Dear Barb: >You sound so young to be almost 60. My mother always said never give your age >or your bra size... >So Many years ago I stopped at 39. Does it matter which one? Now is that your age or your bra size? OK, don't howl, I'll be good!
4 May 1998	Dear Leisa, Look to the bright side of this one.....his cells are building. If he's feeling like eating again, he's on his way. My counts weren't anything to rave about for a long time, and I'm still low on red cells and on platelets. I'm going for my one year check up in June. What a great attitude you have. As my friend Gary Moon says: "Get a good attitude ----and keep it!" Hugs, Grannybarb
Mon, 22 Jun 1998	Dear Rita, Holy cow, your husband really has been through it hasn't he. What an unfortunate set of circumstances you have endured. I'm glad he's doing as well as he is, but do understand the desire to find a chemo that will help. Has he been on fludarabine at all yet? It's the new first line treatment, but I know that if your doctor recommends it, it will likely mean shots of cell growth factors to build up the red cells and platelets. I'd suggest a visit to a full strength cancer center for a second opinion before I'd jump in any direction. Is there one nearby? Hope that helps, GrannyBarb
22 Jul 1998	Ernie, I didn't tell the children just at first. I was in denial myself, my mom had just died, and my daughter was getting married a month later. I think it took about 3-4 months for me to absorb the info before I was comfortable telling the children--all adult-- the whole story. Since then, they and my husband have been my mainstays. GrannyBarb
21 Aug 1998	Dear David and All, Let me share a very funny story with you all. When I returned from Boston and my BMT (bone marrow transplant) I was bald as could be. I had a bit of fuzz in various places, but nothing worth talking about. My 5 year old grandson is accustomed to coming to visit early and walking into my bedroom to wake me up. Imagine his reaction when he came looking for his Granny and found a bald headed person in her part of the bed. Even Grandpa has hair! "Mommy, Mommy," he ran down the stairs crying, "some bald guy's in Granny's bed. Where's Granny?" I, all unkowing slept on. When I did awaken, my daughter brought Ben into my room again. "Ben this is Granny." "That doesn't look like my Granny!" "Honey," I said, "I know I look funny! My hair fell out while I was so sick. It's your Granny, though. Tell you what, see the wig on the dresser. I call that my "head". Will you get my head for me and I'll put it on so you have your Granny back?" Very dubiously, he did that, and very deliberately I put the wig on my bald pate! "Well, what do you think, Ben?" "WOW!" he answered, "You really are my Granny! Take your "head" off so I can see you again!" WE still giggle about that whenever we see one another! I shaved mine off when it started becomming a pain in the you-know-what. It was about 8 inches long and making the most horrendous mess you've ever seen. Cyberhugs, Barb
30 Aug 1998	but this is a fascinating article about HMO's that are provided by your employer if your's is self-insured. Read it and then get angry enough to lobby your congressman and senators. As long as they don't have to deal with the same health services we must, they won't understand until we threaten not to re-elect them! It matters! Sorry for sounding off to those of you who don't live in the US and deal with out totally politically idiotic health care system. Grannybarb
1 Sep 1998	We weren't even really a list, just a nutty group of CLLers who had found one another and were determined to share with one another. I"m so glad we did find one another though and that we grew, and grew, and grew! Each new member of this group adds so much in thoughtful, helpful information that it's wonderful. OK. I'll get off my soapbox, but thank you all for being here, for sharing, for supporting us, and for letting the world see what a determined group of CLLers can be. Grannybarb
22 Oct 1998	Dear Ones, I'm anemic and sick with a sinus infection. I'm way, way behind on the email and I hereby officially apologize to all of you who know I ususally answer personally when you post to the list. I'm so tired that I'm turning in at 9:40 tonight. If I owe you mail, please be kind and understand why I'm so far behind. Barb
14 Nov 1998	Where's The back up information. I"m singularly unimpressed by testimonials. Grannybarb At 03:44 PM 11/10/98 -0500, you wrote: >AN ALTERNATIVE TO THE USE OF CHEMOTHERAPY >IN THE CONTROL OF CLONAL LYMPHOCYTE >ACCUMULATION IN CHRONIC LYMPHOCYTIC LEUKEMIA > >© 1998 by Sam Castle > >
14 Nov 1998	Dear One, I"m being so good it's boring everyone. I took a header down the stairs on Wednesday night and am now "Limp-a-long-Lackritz" although I just ricked my ankle and knee and am still as a few boards. Then the fatigue and exhaustion leaves me feeling like a washed out dishrag..so I do nothing, and can't tough it out. Hope the iv antibiotics they filled me with are making a difference. My sense of humor is back anyhow. writing this from home again (O blessed sleep!) Hope you can all understand and bear with me until I"m back to normal in a few weeks. BArb
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