All things come to an end..
My “sabbatical” has ended, it has now become full fledged retirement. Today is a particularly poignant day for me to say my farewells to all of you. It has been exactly five years since my husband PC died. I have tried to document his transplant journey for those of you who might find it interesting or helpful in your own future travels.
Several months ago I read a book titled “Year of magical thinking”. Some of it hit very close to home. The author writes about her husband’s death. For one year she could not accept the reality of it, had this sneaky hope that it will all go away and magically he will be alive again, if only she held it all together somehow.
I know what she is talking about. I indulged in magical thinking for almost 5 years – I guess I am a little “slow” that way. I was (am??) still doing triage and CPR on a guy dead for 5 years. That was the reason why this very hard headed scientist / rationalist just could not bring herself to read the one particular document that is still un-opened in her files. It still sends me shivering into a blue funk anytime I try to open it – my husband’s autopsy report. The ‘logic’ went like this : if I tried really hard, if I fought the good fight and helped thousands of CLL patients, maybe I can make him un-dead. Maybe I can “pay” for the sin of letting him die. Too bad I could not find anyone “up there” to cut deals with.
His dog Jasper (that is her, alongside ) was the last link I had with that previous life. When she passed away in 2012, it was almost more than I could bear. She was very much his dog, the last real connection I had with PC. My new dog Buddy is very cute and affectionate. But I find myself holding back, not wanting to get sucked into loving another short-lived creature. Then of course I feel guilty about that too!! We create such strange dilemmas for ourselves.
Over the past few months, it has become final acceptance. Grief without hope of magical thinking, saying good-bye for real this time. Sadness and loss, finally without the soul- destroying guilt I have been carrying around, but without hope either of ‘magical’ redemption and waking up from this ‘bad dream’ of CLL. It still sucks to be alone when I wake up in the middle of the night. One thought in Didion’s book hit very close to home: I had the smarts, I had the latest information, the intestinal fortitude to make tough calls without dithering, we had money, I knew all the CLL experts on a first name basis, we had gilt-edged insurance – all the advantages. He was so very fit, no secondary health problems. He was happy, he had a lot to live for. He was so young, just 51 at diagnosis! Death was not an option, we did not even entertain the possibility. Well, death is not an option we can deny for ever. Not for any of us, it is just a matter of when. Not accepting this fundamental truth of all our existence, I drowned in my own arrogance. Funny thing is, now that I am learning humility the hard way and am down on my knees willing to say ‘uncle’, PC is no longer here to accept my apologies or give me absolution.
One of my reasons for walking away from CLL Topics is that I need to get rid of some of this hubris. I could not save PC, with all the desire in the world. How can I hope / pretend to save anyone else? Wistful expectations I can do so and my inevitable failure were not doing me any good. I have taken too many hits over the years, lost too many friends to this awful disease. As logic would dictate, I got to know the worst prognostic cases the most, they were the ones who needed my help more often. So it is not a surprise that I lost more of them than random CLL survival statistics would dictate.
I am not sure I can be of much use anymore as a patient advocate – that job requires a level of optimism and feistiness and I am not sure I can bring either of those qualities to the table anymore. I told you I will always do my best for you – and now that I can no longer bring my “A game” to the fight, it is time for me to retire. I think I am done trying to leap tall buildings in a single bound, outrunning speeding bullets or conquering incurable cancers. Time to retire, take my dog for walks, play duplicate bridge and improve my appreciation of very complex Hindustani classical music. Time to hang up my spurs and be a grey haired little old lady.
But please remember that that I care deeply – intensely is a more accurate description – about each and every one of you who chose to communicate with me directly. It has been my honor and privilege to have served you. Twelve long years – that is how long I have struggled with CLL; eight of them with PC by my side and four of them by myself. My departure does not mean the websites will be shut down. Our beloved daughter Radha will continue to serve as our webmaster. All three of our website (our flagship website CLL Topics, more recent Updates site and Harvey’s Journal) will be hosted and maintained, open to all comers, for as long as the content remains relevant. There is a ton of information on these sites. I hope you will continue to visit, learn to search for the articles that are useful to you.
If you are like me, if you find that there are days and nights – especially nights – when it seems CLL has taken away too much of your life and soul, if you had to postpone too many dreams or even give them up for good, if sunlight does not seem bright and warm anymore (it was a beautifully sunny day in Minneapolis, the first day of real summer, the day that he died. I remember watching the kids playing Frisbee as we walked back to the apartment after saying goodbye) it is still important to remember that even this devastatingly miserable disease has its value and lessons we can learn from it. When I look back, the last 8 years of PC’s life were probably the best years he and I had – and that thought gives me a great deal of comfort. Faced with undeniable mortality, we jettisoned useless baggage and found time for each other.
I find myself a little wistful when I meet someone with deep and abiding faith that helps them face loss of loved ones. I do not have that luxury. The best substitute for me is an abiding sense of idealism and sense of community. CLL killed my husband PC. CLL changed me in more ways than I can count. I think I am sadder now, but hopefully kinder than I used to be. I like to think I am a little wiser now, but also much more aware of my own foolishness and arrogance. A kind word, a sincere good wish for someone else, these are worth a whole lot more than self-preening geeky intelligence that I used to value so much.
So, here is what I learned. It is important to take care of yourselves, you have more skin in the game of your life than anyone else. Please let your families and caregivers take care of you, don’t push them away. If you are a caregiver, remember you play a very important role. Doctors don’t know everything, even if they pretend to sometimes, but please remember they too are human and cut them some slack. The best investment you can make is in improving your communication skills, whether it be with a bad tempered and over-worked nurse struggling to get the infusion needle into your arm, or your terrified spouse lying awake next to you on bad nights. Hug your children while you still have a chance to do so. While there is no proverbial free lunch, once in a while you can get lucky and a new game changing drug becomes available just in time for you! If there is one tribute that is worth aiming for, it is not whether you won or lost, it is whether you managed to live your life with grace under fire. It amazes me how very many of you manage to do just that, day in and day out.
My love and best wishes to all of you. I will never forget you. I will always be grateful for your kindness to me and my family over the years. Buddy (that is him below) says hi as well.
Chaya
140 comments on "Time to say good-bye"
Thanks Chaya.
William Bates
Like you, I once led a life of usefulness to many others. I continued to do so, years into my diagnosis. Now my life is of little use. But I have CLL. And you do not.
“Faced with undeniable mortality, we jettisoned useless baggage and found time for each other.”
Quite possibly the wisest, most beautiful sentence I have ever read. Chaya, you will be missed and remembered and appreciated for a long time to come. Thank you so much for making a real difference in our world. With gratitude, I wish you many happy years to smell the roses and walk the dog.
Dear Chaya,
You were my first port in the storm of CLL and, as with Dr.Hamblin, I continue to turn to your wise words. With all you have given us over the years, it is only right to wish you a greater sense of peace now, but do accept and appreciate how your ‘geeky intelligence’ enlightened us to the pitfalls and promises in the research we rely on for hope. Your caring responses to endless queries was not hubris, but love. May you have it return to you a hundredfold and may you, Radha and Buddy relish every moment together.
Yes, my dear Chaya it’s hard to say good-bye. But we must. I have been lucky to have that abiding faith. But still no one wants to wake up in the middle of the night alone. I could not have maintained my sanity without you and PC by my side. Arnie died of CLL. His bone marrow just gave out. No infections no secondary anything. BUT…. I believe the answer will be in DNA research and that it going on in a big way. I’m glad you are moving on. It is the right thing to do. Love, Penny
Chaya, I never would have thought of you as an arrogant person. Sometimes, a little hubris helps gets things done and that you did!You were blessed with a great intellect and you used it to help others. And yes, you received accolades. Do they add up to a hill of beans? Maybe not in the big scheme of things but in the lives of those you helped through the website and your wise counsel, you did a mountain of good!
You played an important part in my life because you helped guide my husband and i to seek a second opinion when the local doc begged him to get a stem cell transplant when he hadn’t even achieved complete remission. We did and he didnt get the stem cell transplant. That was 6 years ago and he has lived long enough to get a secondary cancer—now his bladder.Bummer! We will fight that too. You desire to try to control your husband’s fate and let us jump in your life boat to is nothing to be ashamed of! That is how I cope too! Loss despite our best efforts is something that we all must come to terms with and we do that in our own way.
Speaking of puppies, I appreciate you so much, that, although I will never get another dog, if I did, I always said I would name her Chaya. In fact, I have even fantasized that if one of my kids ever had a daughter, I would love it if they named her after you!! I even said your name out loud…so who knows…maybe there with be a Chaya
O’Rourke someday–probably the first and last!
You are my heroine–strong warrior woman–who loved her husband beyond measure. Peace to you, my friend, Nancy Moran
Dear Chaya, Thank You so much for all you have done.
Stay Well,
Chris M.
Dear Chaya,
You have helped me more than I can communicate — I guess I still need to work on those communication skills. Thank you for all your hard work. You are a hero; you just don’t know it yet.
Namaste,
Joanne A.
Dear Chaya,
Thank you so very much for the difference you have made in my life. I never met you personally, but you were always there for me.
Give Buddy a hug for me,
BJ
God Bless you. I hope you find peace in the fact that you have helped so many of us with your unselfish time and information. Have faith, You will see PC again.
All the best
Lindsay B.
You may be retired but your “hubris” will live on forever… on this site, on the myriad of notes I have taken, and in our hearts. And your smile the day we met on the Gold Coast…unforgettable. You and PC touched so many lives and we are better for it. May you have many walks with Buddy and Radha.
Fran and Frank
Chaya, you helped me get through some very dark days and I will never forget that..
A simple thank you is about all I can say through the tears.
Happy trails,
Jennifer M.
Dear Chaya,
I echo the sentiments above.
Your gift of making the complexity of CLL understandable to a previously non-medical person enabled me to get a handle on CLL when I was diagnosed – and, for me, understanding was the first step to acceptance. So you used your gift to make a gift to me – thank you!
I point others in your site’s direction when they find themselves, or a loved one, in the same position – so your good work ripples out. It is a blessing that your site will remain accessible.
I read recently, “There is never a good time to get CLL, but if you have to get it, now is a better time than any other.” Your awareness-raising efforts have contributed to us reaching this situation. So, thank-you again!
Enjoy your retirement, your dog and the Hindustani music (it sounds wonderful).
Have peace of mind that you have brought peace of mind to many others.
Take care,
Rick
Dearest Chaya, you have given so much. I’ll be forever grateful for your help. I’m selfishly sad for your departure. I will miss you but this saddness shall pass too. Mahalo & God bless for all that you’ve done, selfless commentmet to all who have CLL.
Dear Chaya, your loss has left an amazing legacy of help for so many others. Although I have few certainties, I have a strong intuition that love somehow transcends time (don’t ask me the science of how that works!). However you look at it, you were blessed to have shared such love. I think the realities of age and mortality show us all our human powerlessness and make life a little sadder. You have honoured your love by helping others – you are being very hard on yourself to judge that as only some sort of denial or guilt. The sad truth (or the glorious truth) is that we only ever have this present moment for sure. I’m sure you are right to cut free from the constant CLL reminders now and move on with the next phase of you life. May you find new pleasures and joy in the next chapter. With love and gratitude for your clarity and care – even though I never met you.
Thank you Chaya
Chris x
Chaya,
It was so obvious to all of the forum members that you cared–cared deeply to continue. Your insight, realism, hope, and fantastic way of explaining helped so many of us. You deserve to feel the sun, hear the music, and see your puppy do all of those foolish puppy things. Please take care of yourself and live a full life of peace and happiness.
Claudia
Like most people, I had never heard of CLL when I was diagnosed.
The information that you provided, especially about FCR, was very useful and empowering.
I was later diagnosed with 17p deletion and am fortunate to now be on an Ibrutinib trial – another drug that you saw at its beginnings and told us about.
Thank you for giving us your time and knowledge. You have helped huge numbers of people.
Now you need to look after yourself.
Enjoy your life.
Rob
Chaya,
Thank you for your insight.
Peter
Hi, Chaya–
Thank you for your wise counsel and the abundant information with which you have blessed the CLL community. I had chemo (BR after not tolerating the C in FCR) and am in remission. You gave me hope, even in your blunt honesty.
Your websites were a beacon in the dark for me and so many others. I’m glad they will remain available, and much thanks to your daughter. Please know the wonderful good that you have done for so many.
–Frank. (AKA Scot58, now Scot59 going on Scot60. And more to come.)
I am sorry that your work here is done, but I am happy you have reached resolve. From day one, each and every communication from you has been like a gift. I think this “Good-bye” communication may be one of your greatest gifts. You have so intimately shared your heart, your soul and your thoughts, that I feel like a part of me is going with you , and a part of you is staying here. Thank you dear Chaya. You will always be cherished, and never forgotten.
Thank you, Chaya. You helped me get my head around this thing, explained the terminology, and helped me find a course. You have given so much and helped so many. God be with you.
Chaya- You have gone above and beyond any of us could imagine in continuing the web site after PC’s passing. It is time for you to find new pleasures and enjoyment. All of us truly love and appreciate you. I do not feel that I would be feeling as well as I do if not for your guidance toward the Ibrutinib trial. It is working wonders.
May you enjoy your time and travels with Buddy and Radha. We love you!
Anne
Chaya
what ever your motives, you have help so many, me included, you taught me how to be my own advocate. PC was so fortunate to have you by his side. You were his rock as he was yours. I truly wish I had my loved ones to lean on. I don’t My daughters will not acknowledge that I have cancer. (right now in CR), I have God. He has been my rock. My trips to the hospital (2 hrs. away) I drive by my self. Even the ones where I was admitted. It gets me down sometimes, but I have found other ways to get support. I am rather proud how I have dealt with this journey. Humor, my church family, people like you, Moffitt cancer center care, Buy God’s Grace helping me walk my journey. IT IS TIME FOR YOU TO TRULY HEAL. watch those sunsets, walk your dog and know that PC is with you and in spirit. Waking up alone is not what I had in mind to do all these years as well. I know the loss of a spouse to an illness, when in all sense he was healthy. We all heal when we are truly ready, You had a purpose for what ever reason that gave hope to others, it gave you reason to walk your path. I do get it. I know I cannot look at CLL as I did in the beginning. It isn’t me. It’s only a part of me. Thank you Chaya. Bless you on your new journey. The Best Is Yet to come. Oh, I love the music of India. As a massage therapist it was used in my work room.
Chaya,
We both fought the good fight. I’m going to give you the same advice I gave five years ago when PC passed away. I’ve lived my life by these words since my wife Jackie passed away two years ago. I’ve moved on with my life. You should do the same.
From Dylan Thomas
Do not go gentle into that good night,
Old age should burn and rave at close of day;
Rage, rage against the dying of the light.
Though wise men at their end know dark is right,
Because their words had forked no lightning they
Do not go gentle into that good night.
Good men, the last wave by, crying how bright
Their frail deeds might have danced in a green bay,
Rage, rage against the dying of the light.
Wild men who caught and sang the sun in flight,
And learn, too late, they grieved it on its way,
Do not go gentle into that good night.
Grave men, near death, who see with blinding sight
Blind eyes could blaze like meteors and be gay,
Rage, rage against the dying of the light.
And you, my father, there on that sad height,
Curse, bless, me now with your fierce tears, I pray.
Do not go gentle into that good night.
Rage, rage against the dying of the light.
Bruce
Chaya,
It’s not hubris when you’re right. You HAVE saved lives. I am sad to see you go, but grateful for the opportunity to have benefited from the excellent work and advice you provided to the CLL community.
Be well. Be happy. You deserve it.
Grant
In all my confusion and fear I was confronted with much dabble speak and vague nothingness in a strange technical language, then someone gave me a link to your sight. Clear truth. Ahh, I could breath again! Will always remember you as one of the wise ones who I was lucky enough to have cross my bath and gave me room to breath.
Namaste
Kirsten
Chaya,
Thank you for all you have done to help educate us about CLL. Take care of yourself and enjoy your life. You so deserve peace and happiness.
Barbara
Chaya:
I have lived with CLL for 5 years now and it is people like you who have given me hope. Not blind stupid hope (like suggesting I eat asparagus or rub my body with THC oil etc) but real knowledge, information and your own inimitable realistic insight and sense of humour. It is you that has enabled me to understand the disease, treatment and the language used by my practitioners. I cannot begin to thank you for your efforts especially in the context of your own loss and suffering. I will miss you, your updates and positive quirky news. However you must take of yourself. I hope our paths cross and I send you enormous gratitude and love.
Peter
from the West Coast
Chaya,
Thank you so much for all you have done for all of us. Although you will be missed, I understand that it is time for you to move on. namaste.
nancyt
Chaya,
Thank you for sharing your life, your knowledge and your time with us! You will be missed. We love you and wish you the best.
Gabriele and Scott O’Connell
PS: Humility is good, but I love that feisty “arrogant” ( really????) woman. ;)
Chaya,
You were a light shining for all of us who were struggling to understand this disease. We sincerely appreciate what you have given us. Be well and content.
sue and tom
Dear Chaya,
Because of your honest pursuit to unearth all the complexities of CLL and its treatment for others, my husband has benefitted in finding top-notch care and a treatment plan that I am certain we could not have found on our own. We are in the midst of this journey, and so often I find myself thinking of you and your generosity in returning my email and giving of your time to talk with me by phone, fiver years ago, when I know now that you were going through a time of so much pain and confusion yourself. You, the website, the comments from members were the guiding star we have followed in chasing CLL. My heart aches that you seem to find yourself questioning these past 5 years of your journey. Please know that we count ourselves as one of the many who were blessed to have known you and CLL Topics/Updates. I only wish that each time I had thought of the unselfish, honorable work that you have done in the name of CLL patients and caregivers that I had let you know of our appreciation. Thank you for sharing your knowledge and insight, for giving us hope, and for sharing PCs battle.
We wish you many moments of peace and contentment as you go forward,
In gratitude,
Kathy and Byron
Dear Chaya,
How fortunate we have been because of you and your ‘scholarly’ intelligence, excellent communication skills, dedication, determination and hope. You and PC embraced hope and met challenges, along with the rest of us.
You cared enough to create a spring of information and around it grew a community, where one could find knowledge and comfort. Huge gifts.
Heartfelt thanks for your presence and efforts. For giving so much to us for so long.
Best to you, whatever you chose to do.
With love and appreciation,
A
Chaya,
My sincerest condolences for your loss and pain and best wishes through the healing process. Thank you for helping so many along their paths, regardless the motivation.
Bob
You are and will continue to be to me a mentor and a hero in my life, inspiring me with your courage, sharing your wisdom and humility, encouraging me to be the best I can be, your words always giving me hope. I continue to visit this site to dip into that hope, born of rational logical thinking and experience. Hope, not to live forever, but to live well. THANK YOU so much for your companionship over the past seven years since my diagnosis.
Beverley
Chaya, the selfish side of me screams “how could she abandon so many who need her knowledge, experience support”! The realist side of me honors your decision to “let go” and live life while the opportunity exists. Know that you gave me courage to ask questions, advocate, and research any and everything I could on this horrid disease. I waited with baited breath for your return and guidance as Tom proceeds with stem cell transplant next week. Namaste my friend! Eileen
Chaya,
You have given me the framework to understand this highly complex and heterogeneous disease so that I could fight to gain a “Casino’s edge” against CLL, which is all we can hope for. There is hardly a day gone by that I do not think of PC and you and in the context of such a capricious and brief life we all live. You may feel that you did not do enough to save PC but from my perspective I am truly in awe of how well, how thorough and with such humor and grace you fought not only for PC but for us all. You have fought well!
My hope is that you retain the capacity to find joy and interests to fill your days.
For me you will always be “The Catcher in the Rye”
WWW
You made a difference in my life and treatments. Thank you so much for your insights and commentaries. I’ll miss it all. Good luck and may your retirement meet all your expectations.
John
I hope you have found peace. Thank you for all you have done.
DM
You have been an unique source of information for me and have helped me through my battle against CLL.
I only wish the Oncologists in the field were as informed as you, and kept as current
As you. You also have the ability to
Make the comes understandable. I will miss you.
Thank you for all you have given us.
Dear Chaya,
Your willingness to share your story so honestly could not fail to bring tears. But in addition to the reasons you gave for doing what you’ve done, I would add that you have a passion for the truth. It’s something I understand. You made it your business to get behind the numbers, the hype, the drug companies and the doctors when you needed to because you knew that only the real truths, as close as you could come, would serve your readers. So many times I’ve turned to this list for those truths. Even when you modified things later as more info became available, I knew the truth and I were in the best of hands. That strength and determination you passed along have remained with me and will always be your legacy to us.
One last thing: it was the cat I promised myself to hold back from who I gave the most to in the long run. Now, no more animals. But don’t even try where that dog is concerned. That face will bring you great companionship. And if you have the chance, look up my name in the online magazine “Pulse: Voices from the Heart of Medicine,” where two of my essays about patients, doctors and truth are archived. It’s a good, warm magazine. You’ll like it.
With love and gratitude, Ellen Diamond
Dear Chaya
I am a physician helping guide my sister through the morass of CLL. Your site and your commentary has been the source of the best information I have found. Your lucid explanations of testing and treatments have been invaluable.
You are a remarkable person and I thank you for sharing your spirit and intelligence so generously.
Thank you again
Eric
Dear Chaya- I’m glad you’re going to take time for yourself. You have helped me SO much.. I sincerely believe I would not be here to write this if it were not for your advice and suggestions.
I wanted to let you know I’m doing great! Victoria and Cleo (our Aussie, now 12) say hi. Cleo still loves running with me!
Our best wishes you, Radha and Buddy!
Malcolm
Chaya
You are awesome. Thank you so much for your guidance and insight.
Enjoy your well -deserved retirement!
Dan Clarkin
St Louis, MO
Dear Chaya:
You helped me understand the many intricacies of this disease and what lab tests to get, too.
Be well. You earned it.
Eden
Dear Chaya,
Your thoughtful, intelligent, honest writing has helped me, beyond measure, to understand my CLL and journey eyes-wide-open for the last 7 years.
May you find happiness, peace, and wonder.
In gratitude,
Jeff Meskey.
Dear Chaya –
Everyone deserves retirement. Thanks for your service to all of us. Personally I cannot thank you enough for helping me get educated and taking charge of my disease. Best wishes and we will be be here if you get bored.
Mike Parmelee
Thank you Chaya. You have helped me and countless others far more than you will ever know. Enjoy your retirement.
Your site helped me hugely, Chaya, when I first struggled to come to terms with my CLL. Selfless caring for others is your magic and your legacy for me and thousands like me. Thank you, Chaya. Move on, find your peace, and be happy with your new life. I and many others wish you the very best.
Thank you, too, Radha! Just two days ago a traumatized newly-diagnosed man got in touch with me and CLL Topics is the first place I sent him. Thank you for keeping this wonderful flame burning. We all need it.
Geoff
We will all miss your wise and insightful words and help Chaya. I dont know where I would be had you not been there with your information of do and don’ts along with your information on the upcoming new treatments.
I dont think you really realize what you have meant to all of us.
I wish you peace and good health and happiness.
Love to you and your family — Darlene
Dear Chaya,
i was dx with CLL in 2006, at age 38. it was like a lightning bolt hit me. After research on the net, i came across “CLL TOPICS”, which has remained invaluable to me. Your knowledge and insight and explanations in lay persons terms were most informative and invaluable. I am sure me along with many others will miss you a lot.
All the best in whatever your future venture might be.
Bela Ved
Chaya, the selfish me is disappointed you are retiring. The appreciative me though understands you have given so much and must move on with your life. I wish you well. You certainly deserve it.
I thank you so much for all the information you have provided on your website. It has definitely helped me and my family understand my situation and the options available. I’m only 1 year into my diagnosis with no real symptoms and know I have so much more ahead of me. I’m disappointed you won’t be there with the latest information. Do you have any suggestions for how to keep up with this research?
When I was diagnosed, of course I searched all over the internet for information. The official medical sites all provided a similar not very detailed description. You site provided me the information I needed to move forward positively. Your “buckets” article was immensely useful. My local oncologist was in the “wait and see” prognosis and was not aware of more recent tests which could provide a more accurate prognosis. I ultimately ended up with Dr. Byrd, who I know you respect and who equally respects you. Unfortunately after he did more tests, I have learned I do have some higher risk factors. He recommended and I was accepted into the revlimid trial. I decided to participate only after carefully reading your articles about it – with a well balanced description of risks and benefits. I want you to know that your opinion was extremely influential to me.
Grieving is a difficult but necessary process. My wife has struggled for more than a year in coping with her mother’s death and then a few months later with her brother’s untimely death. I have never met you or your husband PC. I can only try to emphasis with your situation. Your comments reflect a level of guilt. Please do no feel guilty. I cannot imagine that PC had a better advocate than you. You are so knowledgeable and have such passion. You did everything you could to help your husband and in the process have helped hundreds or thousands of us with cll. Somethings are simply beyond our control. Health and cll fall into that category. Please don’t beat yourself up. You not only did everything you reasonably could but much much more. You should sleep soundly at night with no second thoughts or regrets.
Although I am saddened you will not be available as a resource as my disease progresses, I am very appreciative of the advocacy you have done and the information provided via your website. If anyone ever deserved to move on, it is you. Someone in a post above referred to you as a hero. I second that. You are a hero to all of us suffering with cll.
I wish you the best.
Dear Chaya,
I found your site when my son who is 44, was diagnosed in January. CLL Topics has given us such a clear understanding of the tests and results. I have relied on your expertise in gaining a greater understanding of this disease. Blessings to you for all your selfless work in helping others in this journey. I’ll pray for you to find that deep and abiding faith to help make this next stage of your journey one of peace and contentment. Thank you for everything.
Oh, Chaya, grieving is something we all must do our own way, in our own time. It breaks my heart to read that you have carried the burden of “letting PC die” and needing his forgiveness for so long. I know he would be the first to tell you how much he appreciated the incredible fight you put up to help him through his CLL journey, and while you ultimately couldn’t save PC, you will never know how many, many people have been saved because of this site. There are no words to fully express the thanks all of us who have benefited from it feel. As for giving you absolution, that is something only you can give to yourself, and I think this is the right step towards that.
I understand what you are saying about losing Jasper. For my family, Bernard was the piece of my father that was so important to my mother, and losing him was very hard for her, and for us. I know you will find a different way to relate to Buddy as you move forward.
It is time for you to do that. You are leaving an incredible gift behind, in this site, as you move into the next chapter of your life. Many more will be helped, and even saved, because of that gift. Enjoy your retirement from this chapter. I hope to run into you again some day, perhaps at a concert, with you explaining the intricacies of classical Hindustani music to me.
Pat Kennedy
The tall lady at the Niagara Conference
In your goodbye – I am still learning from you. I have never been able to finish Didion’s book about her husband’s death. One more thing to admire about you :)
Through tears and with gratitude – I thank you. May you have many MANY happy puppy days!
And I hope you kick that hubris word out if the window right fast. Bad self talk that. .
Chaya,
Words cannot adequately express my appreciation for all you’ve done for me and our CLL community. I am forever grateful to you and CLL Topics for the introduction to the NIH Natural History Study. Most importantly, you have given me the knowledge, courage, and strength to blaze the trail on my CLL journey.
I wish you much joy and happiness on your journey.
All the best,
Susan
Dear Chaya,
Thank you for giving this site your energy and focus, I am grateful that the important basic info will still be available. Thank you Radha for carrying on as webmaster. You inspired me many times and I wish you joy.
S.
Dear Chaya,
Like several others have said; you gave me my sanity back, or more correctly, gave me a path to find my way back.
Also, your geeky sanity when it comes to scientific matters, has been invaluable, as has Dr. Hamblin’s kind knowledge been a light in a fog of fear!
Keep walking the dog, as “my” haematologist says. Stay well.
Mette
Chaya, my treating you to a salad and a water in Orlando a few years ago was my way of thanking you for being our splendid advocate. You gave us hope that we were not alone and someone with knowledge and perseverance was looking out for us. Your foresight to open and maintain the website provided us all with “company”, others sharing the challenges of CLL. As a result we didn’t feel so alone.
You’ve done a great service to so many and deserve much happiness and peace.
Thank you for all you’ve done. We love you and will miss you.
Radha, we thank you for your support and continued efforts to keep us communicating.
Cary
Chaya
I want to thank you for the support you have given me and many others by the information you have provided. But I do understand that it is time for you to move on. You have dedicated many years to this disease supporting your dear husband. What a lucky man to have had you in his life. The love you shared was so special. Not many have that kind of love. Now if you ever need anything I would love to pay it forward so don’t forget we are out there for you now too. If ever in Utah you have a place to stay and my hospitality. You have given me the hope to live my life to the fullest and not allow this thing to slow me down. I may carry it around with me; but it is not who I am. Hugs dear friend.
Thanks for helping me and so many others begin our CLL journey informed and ready for the Marathon ahead. Your kindness and wicked sense of humor still ring in my ears when I read the “latest” CLL news.
Time for you to get on with your life; throw a stick to Buddy for all of us; and if you ever need anything we will all be there for you like you have been there for us.
Namaste
Chaya:
I will not add to the many deserved accolades posted here. Your contribution to CLL patients is without peer. Nothing lasts forever is the take away here. I regard your retirement as a bittersweet necessity in order for you to carve out a meaningful and pleasurable rest of your life. As a close friend I look forward to your progress on that journey. I plan to be there to share small joys, laughter, common insights and to provide a trustworthy ear plus reliable support when needed.
So grateful to have made a new very dear friend, Diane
Chaya,
I like my information straight up. You have given me this. I always go to your site when I want the facts, in an easy to understand presentation, topped with a dollop of humor and hope.
Good luck to you.
Helene
Dearest chaya,
I wish you the very best in your life ahead. I appreciate all you’ve done for the cll community. I give a personal thank you for your guidance and advice. You guided me to NIH for clinical trials and I got that coveted CR for 2 years. The beast is progressing again, slowly, but I feel blessed to have felt good for sometime.
I have thought of you often. You were a guiding light at a time that was so difficult. Your written words that I know you had to spend hours getting in words I could understand, we’re so appreciated.
Thank you to you and your family.
Warmly,
Linda
Dear Chaya, I also wish you all the best & wish to express my gratitude for your hard work & dedication to this site. You have earned your retirement from everything. I love your new dog, a handsome guy.
As an update I wrote you sometime ago about undergoing a stem cell transplant that I am now a year out from. I had an unrelated donor. A bone marrow was done recently. My marrow is 100% donor and healthy, thriving. I no longer have CLL in it.
It was one heck of a fight from which I am still recovering but I will be fully recovered soon. For my fellow warriors, never surrender, never give up hope & fight the good fight with grace & courage. It is so worth it.
Blessings to all here & to you in particular.
Marie
Dear Chaya,
Thank you for everything. Your website helped me to understand what CLL is when I was diagnosed 9 years ago. It allowed me to answer the question what is CLL and be able to explain all this to my family.
Peter
Chaya,
However you may have felt or now feel, please don’t believe that your experience of CLL has been for nothing. You have brought so much clarity and hope to your confused and often despairing readers, and that has meant everything to us.
As to retirement, you have more than earned it if that is what you want or need. But consider that a truly gifted person cannot really retire so long as those gifts persist. Your gifts are in understanding — both the technical substance and the emotions surrounding CLL — and in communicating what you understand for the benefit of patients and caregivers alike.
Whatever your future presents, may you find satisfaction and peace.
Dave G
I have nothing unique to add to everyone’s expression of gratitude for all you have done for us, and best wishes for peace and happiness. I am sure that this has been the best work of patient advocacy in the history of health, and I am not given to hyperbole.
I too have been the caregiver for more than one person no longer here, and as a healthcare provider, I sit up many a night wondering how I could have helped them live longer, live better. With my husband in the midst of truncated chemotherapy due to neutropenia, I pray that this time I get it right. CLL topics has been my best friend to date in our journey. Thank you.
Chaya,
Thank you thank you thank you. I am so grateful that you’ve been part of my journey. Your commitment, love, and wisdom have been invaluable. I wish for you for what you wish for all of us: healing and wholeness.
Mike Mc
Thank you, Chaya, for your informative website. When I discovered your website shortly after my diagnosis in April 2010, it was like taking a “crash course” in CLL. I am so grateful for the details you provided to help me better understand my disease. I needed treatment starting in August 2011, but I had my “plan of action” in place because you shared your knowledge and insight. I am now in CR and living well.
With heartfelt thanks. May peace and contentment be yours.
Chaya,
Thanks for all you have done. Hope you find peace and enjoy your retirement.
Larry
Dear Chaya,
This Webpage is the best thing which I have ever read about CLL. I admire your knowledge, style and humor. When I had my diagnosis @2012 CLLTopics was like a Bible for me. Still is.
As I understand your reasons for retirement, please do not leave us -patient alone.
I have kind of aggressive CLL which returned 9 months after FCR therapy. I am in a crossroads what to do next. Waiting for your return from sabbatical was my hope for help. I am so happy that this Webpage will be maintained and you “will be around” .
Thank you for all your effort from the bottom of my heart.
I wish you peace and joy at every step you make.
Monika
Chaya,
I have found this web site a key resource for me and my family. I work in a hospital and share this web site with patients as well as physicians. This is the BEST resource for patients like us. I was diagnosed in 2006, completed six months of FCR in June 2007 and remain somewhat in remission. Thank you and your husband for your time, dedication and knowledge. Please know how much we appreciate you..go live your life and I hope you find peace. Thank you daughter in advance for keeping your vital lifeline open for your loyal followers!
Karen
Dear Chaya,
Bummer.
I was excited when your name popped up on my email list. I thougth “Chaya is back!!” With excitemtent and trepidation I clicked on the link like I have for several years now. I was excited for more critically insightful information, along with some fear that the news might be disarming or fearful in some way. Sadly I read your farewell. Looking back, I am glad that I hugged you after your “FCR- gold standard” presentation in Columbia. I am sorry if I suprised you, caught you off guard, or embarressed you. I was so grateful to see such a wealth of information (that must have taken hours and hours of study and preparation) that I felt I must show some gratitude to you.
The appreciation of your supporters is obvious. not only that, every CLL hematologist oncologist that I have met, knows you or of you. In the least, you have made an impressionable memory for thousands – let alone prolonging the quality of life for innumerable patients and leaving a dearth of information for the CLL ers all over the world. You talk of your own struggles with emotions, right and wrongs, and guilt. Yes you are human. Not a religious person myself – I would still vote for you for sainthood, or to place you in the advocates “Hall of Fame”.
Yes you have done so much for so many. I hope that you can appreciate this good. Be well, best of journeys, and thank you again.
Stanton Baum
Chaya,
As a retired ExxonMobil Geoscientist, I fully appreciate your comments/feelings regarding not being able to bring your “A” game. My early retirement from the oil patch was due to complicated spinal issues which kept me from bringing my A game (not Exxon’s A game). After years of retirement, I now see that maybe my B, or C game would have still been sufficient, and needed by Exxon? Just something for ‘geeky intelligent’ Chaya to think about — I truly say that in a very respectful, and admiring way. To me you have never been geeky … mercy, that really makes me smile when i think about it. Chaya is just a very caring person who happens to be a very talented scientist that can convey complex issues in a clear, concise, and pragmatic way. I totally disagree with your self assessment of ‘foolishness and arrogance’.
I see your internal confidence (“arrogance”) as just part of the pragmatic scientist you were and still are. Now stop beating up on the scientist/Chaya that we all love.
Now, I want to thank you for all that you have done for me since my 2006 CLL diagnosis. It is not just me, but a number of friends I know who were totally lost when a friend or family member was diagnosed with CLL. I directed them to your site, and all of them made good/better choices and felt much more comfortable after reading your easy to understand medical information and/or opinions regarding CLL. I have not yet had chemo treatment, and I may not even elect to have chemo at all due to the spinal/quality of life issues. I have you to thank for not having chemo to early. I still may not have chemo at all, but I sure understand CLL much better due to you. Thus just knowing what a person is dealing with gives much more comfort than not knowing.
OK, this is getting to long, but maybe it is me that is trying to hold on to something that was and is special to me … meaning Chaya as a person, and your site that has helped me as well as so many others. Now, Chaya, just enjoy yourself and your dog Buddy, but keep your mind open. The scientist part of you will not allow you to close your mind, which is good in my humble opinion. You will be and are missed dearly. Thank You Chaya, Respectfully, Daniel.
Dear Chaya,
I must join the chorus. Your feistiness, brillance and information has helped through some dark days with CLL. If anyone should have won the CLL game, it should have been PC. The truth is, no one wins this game – – in the end it gets everyone, one way or the other. You were brave and so was PC to try for a miracle. I hope you can enjoy your days of retirement and be with PC in spirit. I will miss you and your ideas and support, but I know you will always be pulling for all of us who have this dreaded CLL.
Sincerely,
Laura
Thanks for all of the help I received from you over the years, both from the website and our personal connection when I was involved in a clinical trial. know that what you provided for the CLL community was and remains very important and makes a very big difference to many.
hump39
I will miss your wit and wisdom ….
Be Well.
Dear Chaya,
Thank you for all the gifts you have given us. I have relied on your website and I have recommended it to many (including some doctors.) You have gone above and beyond the call of duty. We will miss you, but you deserve to move on and retire from the CLL business. Best wishes!
Lois
Chaya
I am so pleased I met you and PC some years ago in England. I was the ‘R-CHOP’ lady (initially wrongly diagnosed with NHL). I saw you again speaking at the CLL Forum meeting in London. Amongst many things that you have done – documented above – the one thing you taught me was to ASK questions. I never stopped doing that for 6 years and had a BMT in 2011.
It’s been a very hard two years but I am here. That is down to that initial inspiration. Thank you.
Enjoy your retirement and stop beating yourself over the head with that big stick (a trait I can identify with!!).
Chaya,
We are sorry to see you go, but as a caregiver and advocate myself, I certainly understand. Your website and the community you served were invaluable aids to me and my wife (she has CLL) as we tried to learn everything that we could during the “watch and worry” years. She is now in a clinical trial at MDAnderson with Ibrutinib – which looks like it will be a “game changer” for CLL. In fact, Dr. Keating there thinks that a cure is within his professional lifetime. So I am hopeful that the future of all of your CLL friends is much brighter than it has ever been. Now we just need to get the FDA and other drug approving organizations to move faster than the speed of smell. Being in the DC area, perhaps you would want to be a lobbyist in that regard ????
I am so sorry that PC’s timing was off by a few years.
Best wishes and good luck to you.
Herb
Chaya and family,
My wife and I are so happy to see you move on in your life Chaya. My wife and I have had many gut wrenching emotionally tough conversations about what to do when/if CLL takes me into the next world.
i want her to move on……………. I will want my children to move on. My young children will need a new Dad. I will want my dearly loved wife to have another life partner. I will want them to be happy.
the fact that you have chosen to hang out in the shadow of CLL is admirable………… glad that you’re leaving this shadow as I can’t imagine how one could completely pass through the shadows of grief continually reliving one of life’s darker chapters. I suspect that the sun will shine brighter where ever you’re going.
and so thankful for your leadership and path that you and PC blazed.
what you both accomplished was simply astounding and I doubt will be repeated. Regardless, you gave us the example.
For that you’ll always have my family’s blessing.
You basically blazed the trail in how any patient advocacy/internet coalition/foundation should function. One free of finincial gain as a primary motivation.
Hopefully some of us will step up…………. the heavy lifting you described….
No one in the CLL world has stepped up to provide a pt based funding source that helps promote pt centered clinical trials. (You know,,,,, the trials that don’t offer the financial gain to attract the pharmacuetical investing needed to justify a trial)…
That is something that you did. STANDING OVATION!! Absolutely incredible.
No one has so intimately tied the CLL world together as you did.
While there are some stepping up leadership wise, only time will tell if they can provide the leadership and organization that came from you and PC.
You and your family can be so proud of all you did.
Thank you Thank you.
Leo
Chaya,
Although you will be missed I am happy you are taking time for yourself. Though outwardly strong, being diagnosed with CLL was difficult. I found information through CLL Topics and was encouraged when I attended two of the meetings you held in Columbia, MD. I’d never been to Maryland before that first meeting. It was good to be in the company of others with CLL because they understood. I find that those without CLL do not understand, because to them we look “good” and are therefore “healthy.”
You have not been just an advocate for your husband, but for many of us with CLL. Thank you for the selfless giving of your time and self. You have provided comfort and eased the fears of many. What a blessing you are.
Chaya,
I read half the article twice, and my eyes keep filling up with this salty water mixture, making it difficult to read.
I will try again tomorrow. Your archives are still must reading for the newly Dx. If I had read them in the beginning
I Would not of had to ask so many questions. Thank you for your patience. Best Wishes for today.
Thanks for all, xoxo
Star struck fan
Js.
Blesssings Chaya……..many, many blessings.
How grateful I am that the Universe tempered my situation with such an act of service as yours……
How grateful I am that our paths crossed on our respective journeys………….
Now breath and imagine wonderful new adventures….
Janeen
Wishing you the very best in retirement. I am deeply indebted to your intelligence and feisty way of presenting the tons of information so badly needed for those of us still in the “game” of having to make life and death decisions. Keep searching for your peace and God will meet your there.
Debbie
Oh Chaya. I have read and reread your article and all the comments so far. I know there will be many more.
Where do I start? For now, I will do a tiny post. Later ..more to come.
You have truly changed my life. In fact, I am alive today because of you. My first inklings of what CLL is came after my chance dx and my google search took me to the original Topics in 2007. Your scholarly articles reinforced my decision to avoid treatment based only on WBC as my counts got to 200k yet I felt fine. “A Clinical Trial perfect for our Times” put me on the path to the NIH Natural History study of CLL and my expert team was formed in 2010. Not only have I found my great CLL team there, but because of the early CT scans that were part of my Ibrutinib trial there (2012) (thank you again, dear Chaya !!), my lung cancer was discovered and treated by wonderful NIH staff.
I think if you put those of us whose lives you saved end to end .. well, it would be an interesting sight, to say the least, and would probably stretch for many blocks.
But most seriously, you are very loved and deeply respected. You are loved for your gifts to us, for your fierce uncompromising intelligence (I love geeky!), for your honesty and your bravery in demanding honesty in all those you deal with, especially those in the medical/pharma community. You gave unsparingly of yourself .. first to your dear partner and then to all of us, poor surrogates but definitely in need.
Now part of your legacy is this wonderful webspace with the archived articles and us .. your rag tag band of followers who must bumble on as best we can doing the good work .. we can direct newbies to this site, encourage building expert teams, encourage self-advocacy and wariness of quick fixes or too-good-to-be true silver bullets from unreliable sources. But we are a poor substitute.
We will sorely miss your cogent analysis and gifted translation of the medical literature and your accessibility and personal mentoring to so many. But most of all, we will miss YOU .. your vibrant self, never a little grey haired lady but our warrior queen.
So my tiny post grew .. just like my respect, awe and caring for you.
Wishing you all the best, dear Chaya, as you venture out to new adventures. I, too, now consider you a sister on this planet and will be in touch to be a part of your new world.
Chaya,
I lost my dear husband to CLL three years ago and I totally understand what you are saying. I remember his sister came over several months after he passed away and said “let’s go in and clean out his clothes and things”. I said “I know this will sound crazy, but I keep thinking what will he wear when he comes back if I get rid of his clothes?” I, too, kept thinking he was coming back.
Your site was invaluable to us when we were going through the battle and I thank you from the bottom of my heart for sharing your knowledge and experience.
cwarren
How grateful we are for you being there in this world and for sharing your views and making us better people. You became the “gold standard” for knowledge about CLL. That’s not too bad!
Chaya,
I can not begin to express the depth of the impression that you and PC have made in my life: my choice of an upfront HSCT (admitted to hospital the day I learned of PC’s passing), my early jump into a clinical trial of a small molecule and my arduous avoidance of chemo, my blogging and email and internet life, are all a direct result of your example.
That said I am so glad you are moving on. Enough already with this capricious CLL. I wish I could move on to, and say I once had CLL. I happily will settle for having tamed the dragon for now with ibrutinib.
You and PC have made the world a better place and that is a shining legacy that you should alway carry with pride. I feel very lucky to have known you both, and I am quite certain that our paths will continue to cross.
Stay strong. We are all in this together
Your friend and admirer,
Brian
Dear Chaya
I was diagnosed last September and found you the day after you started your ‘sabbatical’. What you gave me through this website was exactly what I needed then, and still need now; clear, no-nonsense information that has helped me understand what I am dealing with and makes me think that I might be able to get on with life while doing something (or nothing in W & W) with this awful thing.
Please cut yourself a little slack. You have given so much to so many people at a time when you were overwhelmed. All grief is intensely personal and each of us deals with it differently; some need time and space, some need to be distracted by staying furiously busy. You couldn’t have saved PC – nobody could – but you have ensured his memory and his legacy lives on with all that you have done both before and after he passed.
Your humanity shines like a beacon. Enjoy your retirement, stay well and rest easy
Rob
Hello, Chaya.
I want to thank you for all you have done for all of us CLL-ers, and for me. Your thoughtful and forceful words on the CLL Topics web sites were weapons on my behalf since I started to learn how to navigate my way across the CLL minefield. I am a stronger advocate for patient knowledge because of your advocacy for all of us.
May you find joy and satisfaction in the rest of your endeavors, and peace in all your quiet times. And trust yourself to love Buddy with all your heart…
[Fred]
Chaya
I can only echo the many positive sentiments expressed in the prior 80 plus comments-you were the penultimate patient advocate. I remember someone saying that there are people on the cutting edge of knowledge, those who read about the cutting edge, and those who are able to communicate that knowledge to the rest of us. You certainly filled the latter two categories.
To be honest, I never fully knew the entire backstory as to how you entered into this arena. Your good bye note provided the answer to many unanswered questions–a personal love story and the grief that followed. And I can sense that the sense of loss while old still remains fresh in many ways, even with the passing of PC’s dog. Having lost a wife through cancer, I can only say that grief, while changing in nature and intensity, never fully goes away. To appreciate the emotion without it becoming overbearing is human to my way of thinking.
Perhaps, like Michael Jordan, you might someday come out of retirement. Perhaps you will consider renewing your unique role in the CLL world, but do it with different motives and sense of purpose.
For now, enjoy your respite and time to yourself. It is well deserved.
Tom
Chaya,
Thank you to you and PC for the years of insight and information. When first presenting in 1996 your site was the first that truely helped me understand and start to deal with my disease. I sincerly appreciate the countless hours of information you have provided.
Best wishes, it is time to move on.
From all of us
Chaya,
Thanks for helping to make sense out of this CLL thing for me and others. Best wishes for your new life (but I will miss you)
Monte
Chaya,
Thank you for the legacy that you have left for us and others to follow. You helped me make the decisions that I had to make to stay alive.
Enjoy your new endeavors as you leave behind your work here.
Best,
Ron
Chaya,
You were one of the people along the way who really helped me. It is good to see you have gained the wisdom to realize it’s time to move on. You suffered a devastating blow with the loss of PC and you deserve the chance to carve out a different life now. I wish you only the best and will always remember you as a great helper and advocate for the CLL community while you were taking care of PC and afterwards as well. That was a lot of giving. You are a wonderful human being. Take care and I wish you only the best.
Chris Randolph
Chaya,
Thank you and God Bless you. Be well.
Cathy from Indiana
Chaya,
You have done more for me than I can express. Two examples come readily to mind. From you I learned of the link to Agent Orange, which led to VA healthcare. And I learned of the NIH Natural History Study of CLL, which has allowed access to expert advice and diagnostic testing.
We will miss the “Isaac Asimov” of explaining CLL to the non scientist.
You have done well. Don’t beat yourself up.
Thank you,
Jim Wilson
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