LIVING WITH CHRONIC LYMPHOCYTIC LEUKEMIA, RICHTER'S TRANSFORMATION, DLBCL, AND EVERYTHING ELSE
Monday, May 22, 2006
Goodnight, sweet prince
Pyewacket, 1987-2006
The first cat I ever knew who preferred love to food. He has been one of the greatest blessings in our lives. He was our companion, our friend, and our fellow explorer. May your journey be a good one, my sweet Pye, and may we meet again.
10 comments:
Anonymous
said...
David- I am so sorry for your loss with your love Pye. Really was a beautiful cat and I know a great traveler. Maybe there's another Pye just waiting out there to meet you.
Actually, he loved the printer because it was warm, and was located below a lamp that also was warm, and because it was next to the computer, where we always seemed to be. So he could be comfortable and at the center of attention, and he liked to offer up comments on a variety of subjects. Later, when we got a different printer, he would lie on the computer table in front of the keyboard, and he would put his head over my wrist for a pillow, which made typing rather difficult.
Losing a pet is very difficult. They are dependent upon us for everything (especially if they are indoor animals), and we love them like children.
I remember all of my animals with great fondness, and the pain of losing them is only offset by the knowledge that you have taken them off the street and provided for them.
Losing a pet is especially hard after so many years, and also when the pet has a loving personality and is truly bonded to you. Pye was quite a cat, a great joy and also a great comfort to both of us during the time of my CLL diagnosis.
Pye was a rescue, too. He was abandoned at an RV park, and to make a long story short, we eventually found his original owner's sister, who knew his birthdate and something of his history. We adopted him when he was seven, so we had him for 12 years. We also eventually found his original owner, who felt he would have a better home with us (and since he ran away from her and toward us when he saw her coming, he voted with all four feet.) She said seven was "old" for a cat. She'd have been amazed at how long he lived -- 19 was quite old, but not old enough!
David, I haven't been on the computer too much this past week and just now read this. I am so sorry for your loss. Some people can't understand how we can be so upset over the loss of a pet. But they truly do become a part of your family and it hurts when they are gone. I hope your pain will begin to ease in the not too distant future.
Marilyn and I thank you all for your comments. We miss him greatly. It gets a little easier, but I still expect him to walk around the corner at any moment, and at night I miss the little footfalls on the bed as he approaches, curls up next to me, and purrs.
It is also important for us to remember that now he is no longer in pain, and that he had a very long and good life. According to the chart at the vet's office, 19 for a cat is equal to 92 for a human. Would that we, and all those we love, could live to be 1,000 (with our looks and health when we were 20!)
Dear Marilyn and David, I am so very sorry to read about your loss. I know you will miss him so much in the days ahead. So very sorry and hope that you can get past the sad stage, and remember your guy with a smile. It takes a while. Beth
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
-
Mike Peters of the Alarm Dies from CLL and Richter’s
“The fight against cancer is the same as standing up to injustice… it’s
about not backing down.” Mike ...
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
-
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
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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
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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|
-
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.
10 comments:
David-
I am so sorry for your loss with your love Pye. Really was a beautiful cat and I know a great traveler. Maybe there's another Pye just waiting out there to meet you.
David and Marilyn,
I am very sorry. Looks like Pye loved the printer, too! Or was that to get your attention away from the computer?
Actually, he loved the printer because it was warm, and was located below a lamp that also was warm, and because it was next to the computer, where we always seemed to be. So he could be comfortable and at the center of attention, and he liked to offer up comments on a variety of subjects. Later, when we got a different printer, he would lie on the computer table in front of the keyboard, and he would put his head over my wrist for a pillow, which made typing rather difficult.
Losing a pet is very difficult. They are dependent upon us for everything (especially if they are indoor animals), and we love them like children.
I remember all of my animals with great fondness, and the pain of losing them is only offset by the knowledge that you have taken them off the street and provided for them.
For all of my animals have been rescued strays.
Losing a pet is especially hard after so many years, and also when the pet has a loving personality and is truly bonded to you. Pye was quite a cat, a great joy and also a great comfort to both of us during the time of my CLL diagnosis.
Pye was a rescue, too. He was abandoned at an RV park, and to make a long story short, we eventually found his original owner's sister, who knew his birthdate and something of his history. We adopted him when he was seven, so we had him for 12 years. We also eventually found his original owner, who felt he would have a better home with us (and since he ran away from her and toward us when he saw her coming, he voted with all four feet.) She said seven was "old" for a cat. She'd have been amazed at how long he lived -- 19 was quite old, but not old enough!
Hi David,
I just now read about your loss of Pye.I have lost dearly loved pets and it is never easy.
I am so sorry for your and Marilyn's loss.
Deb
I am so very sorry for your loss. Pets define unconditional love. I'm sure only time will help you get past that empty feeling.
Marianne
David,
I haven't been on the computer too much this past week and just now read this. I am so sorry for your loss. Some people can't understand how we can be so upset over the loss of a pet. But they truly do become a part of your family and it hurts when they are gone. I hope your pain will begin to ease in the not too distant future.
Marilyn and I thank you all for your comments. We miss him greatly. It gets a little easier, but I still expect him to walk around the corner at any moment, and at night I miss the little footfalls on the bed as he approaches, curls up next to me, and purrs.
It is also important for us to remember that now he is no longer in pain, and that he had a very long and good life. According to the chart at the vet's office, 19 for a cat is equal to 92 for a human. Would that we, and all those we love, could live to be 1,000 (with our looks and health when we were 20!)
Dear Marilyn and David,
I am so very sorry to read about your loss. I know you will miss him so much in the days ahead. So very sorry and hope that you can get past the sad stage, and remember your guy with a smile. It takes a while.
Beth
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