Marilyn I'm so very sorry, thinking of you. David will be missed by so many, there had not been a day since my diagnosis two years ago when I have not checked in on him to see how he is doing. He was an inspiration. So very sorry for your loss.
Marilyn, I'm so sorry. I've been reading this blog since my own CLL diagnosis in 2011 and was always rooting for him. I appreciate him sharing his experiences and have learned a lot. He was blessed to have you by his side through all of this.
Dear Marilyn , I'd like to tell you how much David's CLL Diary gave me information ,inspiration , courage , and , yes,good cheer. God bless and Godspeed to David , and many and grateful thanks to you , Marilyn ,for sharing him with us in the CLL community. Peace x Love x
Marilyn, My heart goes out to you in your loss. You have been an amazing partner and support for David, who in turn has been such a luminary in our CLL world. Sending loving thoughts to you. Aloha 'oe, David.
Marilyn, so sorry to hear this news. David and his blog were instrumental in guiding me along my own CLL journey. His blog was one of the very first I found after my diagnosis - I am so glad I did.
His humor, wit, and unflinching view of his disease enlightened many who are traveling the same path.
Thank you for supporting him and being his caregiver.
So sorry to hear this news...I don't know you Marilyn, nor did I know David - although, like many others, I regularly checked into this blog since being diagnosed with CLL three years ago. I found it inspiring in its combination of energy, optimism, intelligence and realism. From work I have done researching the CLL community online, I know that others did too. He will be missed Marilyn, and you will be thought of by CLLers across the globe in your loss. Much love. Julia, UK x
David was a man who helped people he did not even know. What a legacy he has left in this world. All of those who benefited from his story will feel adrift without his insight and his shining example of courage, which somehow made us stronger.
My heart goes out to you, and my thoughts are with you as you navigate this world without him.
Absolutely crushing news, and so unexpected by me. Marilyn, David was as brave as any soldier in combat, and has literally been fighting for his life, both physically and mentally, every day for so long now. And he has continually inspired his followers to do the same. I grew to love David, though I never met him. But his kindness, humanity, and courage could not be missed - but now they will be.
Marilyn…David's blog offered me so much comfort, humor and information. His kindness and courage will be forever remembered. He was like a lifeline at my initial diagnosis in 2012. Thank you both for all you have done for so many.
Marilyn ,I am so sorry for your loss, was not expecting to hear this sad news so soon . David`s blog was and still is the best for cll info.(and everything else) You must be heartbroken now, may God give you strength to get through this difficult time. Praying for you and David. Andrew (Ireland)
Dear Marilyn, I am so very sorry for your loss. David's journey was a great source of hope and reassurance for me since my diagnosis. My heart goes out to you and I will of course have you in my thoughts. May David RIP.
Marilyn, I am shocked and saddened by David's passing. David's blog was inspirational and helped me no end. My prayers and thoughts are with you. Michael (Australia)
My husband and I are very sorry to read of your loss, Marilyn. David's writing has been a source of information and inspiration for my husband who was diagnosed 18 months ago. David's blog will continue to be a font of knowledge, written so comprehensively with his marvelous talent and I'm sure it help many others seeking answers on how to face this disease. Our thoughts and hearts are with you,
Marilyn---I am so very sad for the loss of David. I know you need time to deal with this. There are no words. My heart flies to you. All my love Jenny Lou
This morning I was choking back tears for a man I didn't know but knew how courageous his fight was against his own cancer at the same time being an inspiration to others. David, thank you for that as my husband was diagnosed with CLL Oct 2011. Marilyn, thank you for being my inspiration as I am the support to my husband. Please take care and find comfort in knowing David touched the lives of so many CLLers...Love from Buffalo, NY
Marilyn, I am so sorry for your loss. To see your post that David had passed away came as a total shock. I simply sat with a pit in my stomach and a sadness for a man I never knew personally. But through his humor and courage to share his CLL journey with all of us CLLers, I felt I knew him. Certainly he would be telling me to never give up, and I won't. God Bless David for sharing his life with all of us. It has made my (our) journey(s) so much easier.
Marilyn, (She Who Fights Insurance Companies) I usually begin my day by checking in with David to see if he has posted anything new. When my husband was dx in 2011, I found David and loved his writing style. I will miss his writing very much. Give us some details of what went wrong when you are able. His last post was so positive and hopeful. I am very sorry for you loss, you were a great help and comfort to him.
I found David's Blog early in my journey and found a kindred spirit and marveled at the eloquence of his ability to write and truly communicate what it was like to dance with the CLL Bear. It was devastating to hear of his RT and now this...!
I am humbled by David's journey, not only in the way he lived or navigated through it but in his humanity of spirit that he so generously shared with us all. What more can we say than He fought well, lived well and our hearts can only go out to Marilyn and those who were close to him for their loss and ours as a community.
Rest, David, without the burden of your long struggle as now your spirit can truly soar untethered to the anchor of disease.
I want to let you know that I found David's blog post on your visit to the cancer park in Santa Rosa the week I was diagnosed with CLL and thyroid cancer. I felt an instant connection and found comfort in his words at a difficult and confusing time. I'm so sorry to hear of your loss. I'm thankful for all David shared. I hope you find comfort knowing the energy he shared helps many of us.
My most sincere sympathy to you and all of your family for the loss of this wonderful person and courageous trailblazer who inspired all of us. Thank you for giving me the opportunity to express my appreciation.
I have been traveling the CLL journey with David's guidance and inspiration for many years. His absence is like a hole in my soul. He wrote of you, Marilyn, with such love. He used his gifts for the benefit of so many of us.
He and I emailed periodically with our mutual love of classical music and our similar political views. David was a true "mensch," and he will not be forgotten. My heart goes out to you for the loss of such a wonderful soul-mate.
I am sorry for your loss. David's blog gave me much comfort and information. I appreciate how he shared his journey. He will be missed. Sincere condolences to your family.
I just wanted to say how sorry I am for your loss. David's blog was truly an inspiration for living despite this disease and your love and support helped him through. I only came to it recently as my mum has richters and has relapsed after CHOP - OR. We are in a difficult place and I was really rooting for David. Thank you to him and yourself for helping and inspiring so many people in a dark place. Thinking of you. Vicki
Marilyn, Only this morning did I read of this. I am so deeply saddened. David was one of the first people to reach out to me when I was first diagnosed in early 2005. He inspired, encouraged, and educated me. I followed his blog from the start. His love for you, and from what he often wrote of you for him, was deep and one of those rare relationships that can be honestly be described as soul-mates.
There are no words I can offer to ease your pain. Just know that I and many others just send our love to you.
Marilyn, I am so sorry about David. Everyone's comments echo mine. You have been a great strength to him and he has always been so supportive, brave and helpful to other with CLL. My prayers to you and your families. He will be missed.
Marilyn, My heart is with you. His commitment to the CLL community was deeply appreciated. His blog was a great educational and supportive source for us all.
Marylyn, I am deeply saddened by your loss, and the loss to the CLL community. When my wife was first diagnosed with CLL in 2010, I found this blog, and read it, starting with his first posting. I admired the intelligence, heart, courage, grace, wit, and aplomb he showed as he confronted this nasty, relentless, shape-shifting disease. He was a wonderful communicator, and for me, his narrative humanized the struggle better than any other person I have read. Your lives have touched all of our hearts. May he rest in peace, and may you find comfort in his loving memory. -Barry
Marilyn, I am so sorry to hear this news. David was of such big help to my friend Gene. When Gene got CLL, I googled the heck out of it and found David's blog. And much to my surprise, I learned that we were all UC Santa Cruz grads! I wrote him immediately and he took the time to set us on the right path. As a direct result of David's advice, Gene was able to 1) get a real scientist doctor, 2) avoid FCR (which his cardiologist later said would have killed him), and 3) actively and proactively manage the CLL. We owe such much to David and how he lived his life. Plus, he was a damn good writer…definitely a Banana Slug!! You are in our thoughts. Beth
No one deserved to beat this more than David. Deeply though I mourn this loss, I know for certain his spirit is with us forever. David set me on the path of CLL knowledge years ago when I was bewildered and facing my transplant. Thank you David. I will never forget. Rest in peace.
Dear Marlyn. We are so sorry to hear about David's passing. Please know David has helped so many with his fight and his experiences and wisdom had become a very important part of my wife's Cll fight. Love and blessings to you and your family.
I'm so sorry, Marilyn. As many others have said, David was a great inspiration. Ever since my own diagnosis, two years ago, he provided knowledge, humor, and yes, hope. All the best to you and my fellow cll'rs. David will be remembered!
I have been away for the whole of winter without reading any digest and today I just saw the sad news of David passing away. It makes me feel so terribly sad to read this news. I have very fond memories of him in my early years living with CLL, he did so much to help me and was always an inspiration, my thoughts are with you Marilyn in these very sad times. Chonette Taylor
Words are inadequate at a time like this. As for so many others, David was an inspiration to me and an example of how to live with CLL. I never met him but I so admired his indomitable spirit. May your memories comfort you.
I am so sorry for your loss. I started following David's blog when my uncle was diagnosed with CLL and found your husband's ability and willingness to share his experiences with others heartwarming. I have continued to check in on his blog to see how he has been doing and am deeply saddened to hear of his passing. My thoughts are with you.
Dear Marilyn I was on vacation when the news of David's death was announced. Now that I am home I wanted to tell you how sorry I am for your loss. Like the other members of the CLL List,I am sad that we have lost another member of our CLL family. Whilst I was in France I lit a candle at Sacred Coeur for all the members of the CLL List and the families of those we have lost. You were foremost in my thoughts at that moment. Pam Peterson
Words cannot describe my sorrow. I have been reading his blog since 2005 and he was a wonderful inspiration. May G-D rest his soul. I a so sorry Marilyn. He was a great man and helped so many. Its hard to express how sad I am. He is in a better place
So very sorry to hear about David, I followed his blog since getting my own leukemia almost 5 years ago. My heart goes out to you! R.I.P. David, I'll see you soon....
My sincerest condolences. David’s blog and Terry Hamblin’s were the most useful things I found on the internet when I was first diagnosed with CLL over two years ago. It feels like I lost two very good friends in a short space of time even though I never met either of them in person.
Dear Marilyn My deepest sympathy to you and your family. David was such an inspiration to so many of us. My heart goes out to you. Sincerely, Dorothy from Colorado
Sorry to hear about David. I have not read his post since March 1st of this year. He has always given me hope since I found out about my CLL two years ago. I just hope I can last as long as he did. I am just like him and that I am not ready go yet either.
Dear Marilyn, I am so very sorry for your loss of your soulmate, David. My husband was diagnosed with CLL in 2009, and I often come here to read David's blog. It took my breath away when I read your post this evening. My heart goes out to you. I wish you strength and healing peace. Cathy from Ohio
Such a huge loss to the CLL community! I have read his blog since I was diagnosed last July. He was so enthusiastic about his research of the disease. I had prayed he would get his transplant. I am so deeply saddened by your loss. His love for you was so inspirational and the fond memories of David will get you thru this. Betty from Texas
February 2014 in Sedona, AZ, slimmed down to 144 lbs.
My name is David Arenson and I have chronic lymphocytic leukemia. It may kill me. Then again, it may not. Life is full of surprises, although I must admit that this is not the sort of cliffhanger that I had in mind for my 50s.
Until a few years ago, like most people, I had assumed death and disease were the province of old age, not the prime of life. I was just an average person health-wise, and feeling rather fine, thank you. I passed by the occasional wheelchair-bound person or bald-headed chemotherapy patient and didn't think that sort of thing would ever apply to me. The odds were against it, after all. Then, after a blood test at age 46, I became one of those people.
And so, my life has changed. I still enjoy the same things I always have – my beautiful and wonderful soulmate, Marilyn, and music, and walks in the woods, and cheap Asian food at strip malls, and movies in which a giant reptile threatens an entire city.
But I also have a new reality that intrudes, one where mutant B lymphocytes threaten my entire body, and one which requires becoming accustomed to unfamiliar and intimidating territory. My spleen and lymph nodes are swollen and my neck sometimes looks like that of a chipmunk storing too many nuts; bothersome nodes in my left pelvic area are a constant reminder that something is wrong with my body. Over time my immunity has been degraded and I have had to rely more on antibiotics to shake infections that once gave me no pause. I have also experienced the joys of autoimmune hemolytic anemia, of which there are none, which is a scary condition in which the body destroys its own red blood cells, and which leads to fatigue.
My CLL has had more than a physical impact. It has been quite an education -- both in terms of what I have learned about my ability to cope with what once was unthinkable, and in terms of navigating the almost freakishly contradictory world of CLL management and treatment. Needless to say, only a fool treads there without getting the lay of the land; too many local doctors are simply clueless, and even the experts can disagree. I do not claim to have it all figured out, and I expect that I never will, but I am doing my best, and I hope some of my thoughts can be of use to you.
So, if sharing my journey helps you along the way, it will have been my pleasure, something green and growing in this hard, new landscape. We help each other as we can, and this is why we have a vibrant CLL community of websites, forums, and blogs (see links below). The end of the circle is the start of the circle. What goes around comes around.
Writing has been in my blood longer than CLL. I am a former newspaper reporter and editor and co-author with Marilyn of two humor-trivia books, Disco Nixon and Rambo Reagan. Marilyn and I met at the University of California at Santa Cruz and now live in the red rock country of Northern Arizona . . . CLL Diary has been featured in CR, the magazine of the American Association for Cancer Research, and in Family Practice Management, a publication of the American Academy of Family Physicians. Besides writing about CLL, I helped establish CLL Forum, one of the largest discussion groups for patients and caregivers.
As we patients eventually learn, CLL is not a one-size-fits-all disease. Some cases are indolent, some progressive, some quite aggressive. Prognostic tests can give us a much better idea of what type of CLL we are dealing with. Knowledge is power, and I believe patients should have these tests and know what they mean. They do not provide a complete picture, and sometimes clinical symptoms tell a different story than one might expect from the results, but they are important tools that can help determine the when and what of treatment.
Here are the tests: IgVH mutational status, FISH, ZAP-70 (as done at a research institution such as UC San Diego, not a commercial lab), and CD38.
My tests indicate a progressing disease. I am IgVH unmutated and ZAP-70 positive, as measured at UCSD. I developed an 11q deletion per FISH in 2006, which disappeared in 2012 for some mysterious reason, giving way to a 13q deletion. I am CD38 positive now, despite having been CD38 negative for years.
Given my tender age, I will always be navigating treatment options if I want to have any hope of living a normal life span. Knowing my test results helps me plan ahead, and knowing the possible end point in my battle with CLL helps me plan what treatments make the most sense, and in what order. Like many CLLers, I am encouraged by the progress being made by new drugs such Ibrutinib and ABT-199; not to mention the news that T-cells can be supercharged to wipe out the CLL -- in much the same ferocious way that macrophages went after my red cells during hemolysis with AIHA.
The "when and what" of treatment is a subject of great debate among CLL experts as well as patients and local doctors. I tend to take a conservative approach, ever aware of the fact that overall survival in CLL depends not just on the effectiveness of your first treatment. What you do for an encore -- your ability to respond to treatment again, and then again -- may determine how long you get to stand on the stage. The late CLL expert Dr. Terry Hamblin once wrote that CLL is a war of attrition, and I am ever mindful that such wars are won, if they can be won, slowly.
Whether my decisions ultimately are proved wise will be written in these pages. I began using single-agent rituximab (Rituxan) in 2004, adding the steroid methylprednisolone in March 2007 to combat AIHA. In October 2007, after a severe AIHA relapse that left me steroid refractory, I was treated with Rituxan + cyclophosphamide, vincristine, and prednsione (R-CVP). In January 2009, when AIHA and hemolysis of red blood cells returned, I had Rituxan + cyclophosphamide and dexamethasone (R-CD). I used this a few times to control the condition, with shorter and shorter periods until AIHA relapse. Starting in February 2010 I used Arzerra (ofatumumab) and Revlimid (lenalidomide), and then for a year and a half maintained control of the disease -- and the AIHA -- with Revlimid alone. Alas, the Revlimid came at a high price in terms of blood clotting issues, and as of 2012 I was treated with bendamustine and rituximab, which gave me a CR in the marrow and blood, leaving some swollen lymph nodes behind.
2013 is turning out to be my most challenging year yet, with the arrival of Richter's Transformation in April. Up to 10% of CLL patients can expect to develop Richter's, in which some of the CLL clones mutate into a more dangerous B cell lymphoma. Richter's is fatal in some 50% of cases, but it also can be beaten with chemotherapy and stem cell transplant. Read my latest posts for updates on my experience.
My best advice to patients is to gather all the facts you can about your CLL and then think ahead and plan ahead. Develop a long-term strategy, but expect to have to roll with the punches. And don't be rushed by doctors, family, or anyone else into a decision you are not comfortable with: Treating CLL is almost never an emergency. Take the time to learn and reflect, and then go with your intuition.
There are no guarantees that your choices will work out, of course, but at least you can rest assured that you put your heart and soul into making them. That sort of effort is the effort that can, with luck, beat cancer.
It's a peace sign, or a V for victory, not sure which
Quotes I Like
"The thing in life is not to know all the answers but rather to ask the right questions." -- Anonymous
"Hope is not the conviction that something will turn out well, but the certainty that something makes sense, regardless of how it turns out." -- Vaclav Havel
"The man who never alters his opinion is like standing water, and breeds reptiles of the mind." -- Blake
"We must be willing to let go of the life we have planned so as to have the life that is waiting for us." -- E.M. Forster
"Think of all the beauty still left around you and be happy." -- Anne Frank
“Panic is a projection that is not real. We are not just our fears. Our fears do not necessarily determine our future. This is significant.” -- Greg Anderson, lung cancer survivor
"I had a choice to make when they said I was going to die. I could chose to live the rest of my life dying, or I could chose to live life until I die. And I chose to live life'. -- Anonymous cancer patient
"Life can only be understood backwards; but it must be lived forwards." -- Soren Kierkegaard
"It's always something. If it's not one thing, it's another." -- Roseanne Rosannadanna
Either way, we'll be remembered...
-
Yesterday I bookmarked something in my Bob Goff devotional, *Live in Grace,
Walk in Love, *that I wanted to explore in my writing. This morning I
started l...
Intro To My Story
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This is the story of my finding out I had an incurable and lethal form of
leukemia. It starts in early 2002. I've been lucky, as I've lived more than
twelv...
Research Plug!
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Hey there everyone,
Hope is a super powerful medicine - for both patients and their doctors. I
am an advocate of clinical trials because in the 9 years I...
ICU
-
The IvG was infused, but the red blood cells continue to fall and the
source has been identified as a leaking spleen. His clotting factors are
worse than l...
Recent Walks
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This old blog lists my John o'Groats to Land's End Walk in 2009 and may be
of use to others undertaking a similar walk.
There is also a record here of a se...
2 years of normal life
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7 Oct 2013 marked my 2nd year post stem cell transplant, and 2 yrs of CLL
free life.
I am very blessed to be still alive. Have not been updating and hope ...
More side effects from trial
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I'm still on the GS-1101 (CAL-101) trial, but I've been having some
problems. I've developed cataracts in both of my eyes. This can be
related to steroid...
Cancer Networks and Their Value
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Here is an article written by David Haas whose blog is located at Hass Blagg
Cancer Networks and Their Value
Few things in life are as tragic as a cancer di...
Covid Saliva Testing - Cheaper is Better
-
Saliva testing for Covid-19 may just be better than nasal swabs and cheaper
too. It's preliminary, but Yale University has published a letter in *The
Ne...
December 3, 2018 - The Recreation Floor
-
Yesterday and today Claire and I have had the opportunity to explore a part
of Memorial Sloan-Kettering we hadn’t encountered during my earlier
hospitali...
I’m Baaack!
-
I have been away too long and I apologize. This is the longest I have been
away from the blog since I started it in 2008. My Mail program on my Mac
has b...
Job Redux and the Third Chapter|
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0 people like this. The downturn in the economy has done us a favor in a
strange and back-handed fashion. As many of us boomers watched our
retirement acco...
I am not a doctor and I do not play one on the internet. If you take something I say as medical advice and die as a result, perhaps in your next life you will not believe everything you read on the internet.
Copyright 2005-2014 by David Arenson. All rights reserved. Material is for the personal use of CLL patients and caregivers and may not be used or reproduced for commercial purposes.
63 comments:
Oh Marilyn we are so sorry.
May he rest in peace
Marilyn I'm so very sorry, thinking of you. David will be missed by so many, there had not been a day since my diagnosis two years ago when I have not checked in on him to see how he is doing. He was an inspiration. So very sorry for your loss.
Deborah in Melbourne
Skin Plus plastic surgery facility and consult with an experienced breast lift delhi to undergo the procedure.
Marilyn, I'm so sorry. I've been reading this blog since my own CLL diagnosis in 2011 and was always rooting for him. I appreciate him sharing his experiences and have learned a lot. He was blessed to have you by his side through all of this.
Dear Marilyn ,
I'd like to tell you how much David's CLL Diary gave me information ,inspiration , courage , and , yes,good cheer.
God bless and Godspeed to David , and many and grateful thanks to you , Marilyn ,for sharing him with us in the CLL community.
Peace x
Love x
Marilyn,
My heart goes out to you in your loss. You have been an amazing partner and support for David, who in turn has been such a luminary in our CLL world.
Sending loving thoughts to you. Aloha 'oe, David.
Lynn Samuels
Marilyn, so sorry to hear this news. David and his blog were instrumental in guiding me along my own CLL journey. His blog was one of the very first I found after my diagnosis - I am so glad I did.
His humor, wit, and unflinching view of his disease enlightened many who are traveling the same path.
Thank you for supporting him and being his caregiver.
Jeff Meskey, Utah.
So sorry to hear this news...I don't know you Marilyn, nor did I know David - although, like many others, I regularly checked into this blog since being diagnosed with CLL three years ago. I found it inspiring in its combination of energy, optimism, intelligence and realism. From work I have done researching the CLL community online, I know that others did too. He will be missed Marilyn, and you will be thought of by CLLers across the globe in your loss. Much love. Julia, UK x
I'm so sorry to hear about this sad news.pls write details when you feel yourself better.May he rest in peace.
Tuna
Marilyn,
David was a man who helped people he did not even know. What a legacy he has left in this world. All of those who benefited from his story will feel adrift without his insight and his shining example of courage, which somehow made us stronger.
My heart goes out to you, and my thoughts are with you as you navigate this world without him.
Brenda Breeland
Absolutely crushing news, and so unexpected by me. Marilyn, David was as brave as any soldier in combat, and has literally been fighting for his life, both physically and mentally, every day for so long now. And he has continually inspired his followers to do the same. I grew to love David, though I never met him. But his kindness, humanity, and courage could not be missed - but now they will be.
Denny
Marilyn…David's blog offered me so much comfort, humor and information. His kindness and courage will be forever remembered.
He was like a lifeline at my initial diagnosis in 2012. Thank you both for all you have
done for so many.
I am so very sorry to hear this sad news. I always enjoyed David's posts, his updates, knowledge and humor. My very best to his family.
Jan
Marilyn ,I am so sorry for your loss, was not expecting to hear this sad news so soon . David`s blog was and still is the best for cll info.(and everything else) You must be heartbroken now, may God give you strength to get through this difficult time. Praying for you and David. Andrew (Ireland)
Dear Marilyn,
I am so very sorry for your loss. David's journey was a great source of hope and reassurance for me since my diagnosis. My heart goes out to you and I will of course have you in my thoughts. May David RIP.
Dear Marilyn,
No words only tears
RIP Great Warrior David
Marilyn I am so very sorry for your loss. I lost my husband last year to CLL/ Richter's transformation.
My thoughts and prayers to you.
KN
Marilyn, I am shocked and saddened by David's passing. David's blog was inspirational and helped me no end. My prayers and thoughts are with you.
Michael (Australia)
I am so sorry for your loss.
I only discovered this blog today and I immediately bookmarked it.
I was diagnosed just over a year ago with CLL.
DPS
My husband and I are very sorry to read of your loss, Marilyn. David's writing has been a source of information and inspiration for my husband who was diagnosed 18 months ago. David's blog will continue to be a font of knowledge, written so comprehensively with his marvelous talent and I'm sure it help many others seeking answers on how to face this disease. Our thoughts and hearts are with you,
Annie and Tony, Australia
Marilyn---I am so very sad for the loss of David. I know you need time to deal with this. There are no words. My heart flies to you.
All my love
Jenny Lou
Marilyn - What a wonderful man you married and I am too grateful to have read his on-of-a-kind posts on this blog. My heart and prayers are with you.
This morning I was choking back tears for a man I didn't know but knew how courageous his fight was against his own cancer at the same time being an inspiration to others. David, thank you for that as my husband was diagnosed with CLL Oct 2011. Marilyn, thank you for being my inspiration as I am the support to my husband. Please take care and find comfort in knowing David touched the lives of so many CLLers...Love from Buffalo, NY
Marilyn,
I am so sorry for your loss. He was such an inspiration to so many and he will be missed.
Please accept my deepest condolences.
Marilyn,
I am so sorry for your loss. To see your post that David had passed away came as a total shock. I simply sat with a pit in my stomach and a sadness for a man I never knew personally. But through his humor and courage to share his CLL journey with all of us CLLers, I felt I knew him. Certainly he would be telling me to never give up, and I won't. God Bless David for sharing his life with all of us. It has made my (our) journey(s) so much easier.
May his memory be eternal!
Mark
Marilyn, (She Who Fights Insurance Companies)
I usually begin my day by checking in with David to see if he has posted anything new. When my husband was dx in 2011, I found David and loved his writing style. I will miss his writing very much. Give us some details of what went wrong when you are able. His last post was so positive and hopeful. I am very sorry for you loss, you were a great help and comfort to him.
I will miss him. Thanks, David, for sharing with us.
I found David's Blog early in my journey and found a kindred spirit and marveled at the eloquence of his ability to write and truly communicate what it was like to dance with the CLL Bear. It was devastating to hear of his RT and now this...!
I am humbled by David's journey, not only in the way he lived or navigated through it but in his humanity of spirit that he so generously shared with us all. What more can we say than He fought well, lived well and our hearts can only go out to Marilyn and those who were close to him for their loss and ours as a community.
Rest, David, without the burden of your long struggle as now your spirit can truly soar untethered to the anchor of disease.
WWW
Marilyn
I want to let you know that I found David's blog post on your visit to the cancer park in Santa Rosa the week I was diagnosed with CLL and thyroid cancer. I felt an instant connection and found comfort in his words at a difficult and confusing time. I'm so sorry to hear of your loss. I'm thankful for all David shared. I hope you find comfort knowing the energy he shared helps many of us.
JB
Marilyn;
Words are little consolation, but David's contributions and spirit will live on.
I hope that knowing what a difference he made (and continues to make) in so many lives brings you comfort and peace as time goes on.
Thank you for sharing all along, and for letting us know about the sad news.
Mike Abrams
So many tears, Marilyn. I loved this guy in the electronic way that so many else did.
May his memory be for a blessing.
Sherry Gardner
My most sincere sympathy to you and all of your family for the loss of this wonderful person and courageous trailblazer who inspired all of us. Thank you for giving me the opportunity to express my appreciation.
BETTY
I have been traveling the CLL journey with David's guidance and inspiration for many years. His absence is like a hole in my soul. He wrote of you, Marilyn, with such love. He used his gifts for the benefit of so many of us.
He and I emailed periodically with our mutual love of classical music and our similar political views. David was a true "mensch," and he will not be forgotten. My heart goes out to you for the loss of such a wonderful soul-mate.
Helen from Illinois
So sorry to hear about David. My thoughts are with you Marilyn.
Dennis Bayer
Sausalito, CA
I am sorry for your loss. David's blog gave me much comfort and information. I appreciate how he shared his journey. He will be missed. Sincere condolences to your family.
Marilyn,
So sorry to hear of your loss. David's blog was always a source of strength and wisdom.
He will be missed by many from near and far.
Brian
bkoffman.blogspot.com
What an unexpected and devastating loss!
I've followed his journey since it started on his blog.
When you are able, please expand on what happened. He may continue to help us even when he is gone.
My condolences
Scott
Dear Marilyn,
I just wanted to say how sorry I am for your loss. David's blog was truly an inspiration for living despite this disease and your love and support helped him through. I only came to it recently as my mum has richters and has relapsed after CHOP - OR. We are in a difficult place and I was really rooting for David. Thank you to him and yourself for helping and inspiring so many people in a dark place. Thinking of you.
Vicki
Marilyn,
Only this morning did I read of this. I am so deeply saddened. David was one of the first people to reach out to me when I was first diagnosed in early 2005. He inspired, encouraged, and educated me. I followed his blog from the start. His love for you, and from what he often wrote of you for him, was deep and one of those rare relationships that can be honestly be described as soul-mates.
There are no words I can offer to ease your pain. Just know that I and many others just send our love to you.
May I also offer my condolences to you and David's family. What an incredible human being and writer. He will be missed the world over.
Sharon
So so sorry. David's blog gave hope and intelligent advice to all CLL patients including me who has had CLL for 15 years.
Michael Sweig
OC CA
Marilyn,
I am so sorry about David. Everyone's comments echo mine. You have been a great strength to him and he has always been so supportive, brave and helpful to other with CLL.
My prayers to you and your families. He will be missed.
Janeen
Franklin, WI
Marilyn,
My heart is with you. His commitment to the CLL community was deeply appreciated. His blog was a great educational and supportive source for us all.
Marylyn,
I am deeply saddened by your loss, and the loss to the CLL community. When my wife was first diagnosed with CLL in 2010, I found this blog, and read it, starting with his first posting. I admired the intelligence, heart, courage, grace, wit, and aplomb he showed as he confronted this nasty, relentless, shape-shifting disease. He was a wonderful communicator, and for me, his narrative humanized the struggle better than any other person I have read. Your lives have touched all of our hearts. May he rest in peace, and may you find comfort in his loving memory.
-Barry
Maryilyn:
Very sad to hear of your loss, You and Your Family and Friends are in our thoughts.
A.E.Sturnacle
Marilyn,
I am so sorry to hear this news. David was of such big help to my friend Gene. When Gene got CLL, I googled the heck out of it and found David's blog. And much to my surprise, I learned that we were all UC Santa Cruz grads! I wrote him immediately and he took the time to set us on the right path. As a direct result of David's advice, Gene was able to 1) get a real scientist doctor, 2) avoid FCR (which his cardiologist later said would have killed him), and 3) actively and proactively manage the CLL. We owe such much to David and how he lived his life. Plus, he was a damn good writer…definitely a Banana Slug!! You are in our thoughts. Beth
No one deserved to beat this more than David. Deeply though I mourn this loss, I know for certain his spirit is with us forever. David set me on the path of CLL knowledge years ago when I was bewildered and facing my transplant. Thank you David. I will never forget. Rest in peace.
Bob Larkin
Dear Marlyn. We are so sorry to hear about David's passing. Please know David has helped so many with his fight and his experiences and wisdom had become a very important part of my wife's Cll fight. Love and blessings to you and your family.
Gary E.
I'm so sorry, Marilyn. As many others have said, David was a great inspiration. Ever since my own diagnosis, two years ago, he provided knowledge, humor, and yes, hope. All the best to you and my fellow cll'rs. David will be remembered!
AM
I have been away for the whole of winter without reading any digest and today I just saw the sad news of David passing away.
It makes me feel so terribly sad to read this news.
I have very fond memories of him in my early years living with CLL, he did so much to help me and was always an inspiration, my thoughts are with you Marilyn in these very sad times.
Chonette Taylor
Words are inadequate at a time like this. As for so many others, David was an inspiration to me and an example of how to live with CLL. I never met him but I so admired his indomitable spirit. May your memories comfort you.
I am so sorry for your loss. I started following David's blog when my uncle was diagnosed with CLL and found your husband's ability and willingness to share his experiences with others heartwarming. I have continued to check in on his blog to see how he has been doing and am deeply saddened to hear of his passing. My thoughts are with you.
Dear Marilyn
I was on vacation when the news of David's death was announced. Now that I am home I wanted to tell you how sorry I am for your loss. Like the other members of the CLL List,I am sad that we have lost another member of our CLL family. Whilst I was in France I lit a candle at Sacred Coeur for all the members of the CLL List and the families of those we have lost. You were foremost in my thoughts at that moment.
Pam Peterson
Words cannot describe my sorrow. I have been reading his blog since 2005 and he was a wonderful inspiration. May G-D rest his soul. I a so sorry Marilyn. He was a great man and helped so many. Its hard to express how sad I am. He is in a better place
So very sorry to hear about David, I followed his blog since getting my own leukemia almost 5 years ago. My heart goes out to you! R.I.P. David, I'll see you soon....
I am so very sorry to hear about David. I have been reading his blog for a few years now. My heart goes out to you!
Mireille
My sincerest condolences. David’s blog and Terry Hamblin’s were the most useful things I found on the internet when I was first diagnosed with CLL over two years ago. It feels like I lost two very good friends in a short space of time even though I never met either of them in person.
Dear Marilyn My deepest sympathy to you and your family. David was such an inspiration to so many of us. My heart goes out to you. Sincerely, Dorothy from Colorado
My thoughts are with you. I always wished to know my Uncle better.
ian
Sorry to hear about David. I have not read his post since March 1st of this year. He has always given me hope since I found out about my CLL two years ago. I just hope I can last as long as he did. I am just like him and that I am not ready go yet either.
Dear Marilyn, I am so very sorry for your loss of your soulmate, David. My husband was diagnosed with CLL in 2009, and I often come here to read David's blog. It took my breath away when I read your post this evening. My heart goes out to you. I wish you strength and healing peace. Cathy from Ohio
Such a huge loss to the CLL community! I have read his blog since I was diagnosed last July. He was so enthusiastic about his research of the disease. I had prayed he would get his transplant. I am so deeply saddened by your loss. His love for you was so inspirational and the fond memories of David will get you thru this. Betty from Texas
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