Drip, drip, drip…
I am not sure there is such a thing as “Chinese Torture”, or that it consists of slow dripping of water – one drop at a time without end until it drives the victim crazy. Sometimes I think CLL can be a good substitute for such diabolic torture. Sure, you are diagnosed with this incurable cancer. But the doctor did say it is a “good cancer”, right? And it is invisible, in the sense there are no obvious signs of cancer that anyone can see – at least during the early stages. You go to the trouble of getting all the prognostic testing done, and your local oncologist is no wiser about your likely prognosis, he says it is all inconclusive anyway. Incurable. Invisible. Inconclusive. Sounds like drip, drip, drip to you?
I get a lot of emails (and I mean a LOT of emails) from recently diagnosed patients trying to come to grips with this darned disease. After the initial euphoria has worn off – the doctor did say it is a good cancer, you are not going to drop dead right away – the next stage is confusion. Surely, there must be something to do, something that will change the outcome down the road? Should the doctor be giving you something to hold the CLL at bay or even roll it back? Are there any herbal potions you should be considering, or drastic lifestyle changes that can make a huge difference? Doc says no, you are in Watch & Wait, nothing to do but wait. And worry.
You spend a lot of time reading everything you can find on the web about defeating cancer by positive thinking, by potions, by herbal cocktails, by leading a blameless life. You spend a small fortune and religiously swallow a fistful of pills and capsules each day. You give up all your favorite foods, forswear steak and settle for only raw and organic produce that gives your stomach the heebie jeebies. Maybe this will slow down the CLL? Maybe the next blood test will show an improvement in the white count? Is it enough if the count goes down from 32.8K all the way down to 31.6K? (Not!) Maybe you will be the exception, the patient with aggressive markers that goes into total remission – dare we say, CURED of CLL? This is the denial phase.
Then reality sets in. All that hassle, all that money, all those pills. And the white count keeps going up, and / or the pesky nodes keep getting a little bit larger each month. You start feeling a little run down, not quite as perky as you used to feel. Blame the dropping red blood cell counts and hemoglobin levels for that. Perhaps you had made the decision not to tell anyone at work about your CLL diagnosis. Job situation being what it is, who wants to advertise a health issue like this? Perhaps you were foolish enough not to share the news even with your immediate family. You carry the burden of knowledge all by yourself. No one knows why you have been dragging your tail recently, why you are grouchy at times and why you are no longer the life and soul of the party. You get a lot of grief for your “bad moods” and no sympathy at all for being the victim of an incurable cancer. This is the resentment phase.
Drip, drip, drip .. little by little things have gotten to the stage where Doc says Watch & Wait is over, it is time to treat. Phew. Finally, you are going to get some action. So, what is the therapy Doc? What are the chances it will cure me? Big deal, I know I may lose my hair. Who cares. Just so long as I get this monkey off my back once and for all. So, what is the game plan Doc?
Not so fast, says the doctor. There are no curative therapy options for CLL. None of them will actually cure you. Some will roll back the CLL for a bit longer than others, but most often at the expense of more serious side effects. There is no free lunch, relapse is not a question of “if”, it is a matter of “when”. Not to worry, we can keep trying different things, go to the next therapy option when the first one fails and so on. Until we run out of bullets, of course. But if you are long in the tooth, the classic “elderly CLL patient”, you may actually get lucky and run out the clock on this nasty disease. Isn’t that just GREAT?!
And yes, there is a bit of good news. You won’t be losing any hair you have not already lost! Unlike many other cancer drugs, the drugs used most often to treat CLL do not cause hair loss. You can keep your pride and joy, your full head of hair, while sitting in the infusion chair in the doctor’s back office. Might make it easier to flirt with the nurses.
That’s it? Keep trying a series of therapy options until time runs out? That is the game plan? And the whole thing laid out by the doctor in less time than it took you to read this article thus far? Where is the respect? Where is the gentle hand-holding for the patient stricken with an incurable cancer? Where is the solemnity befitting the occasion? Damn it, how come we are always getting the short end of the stick? The next phase emotion – bewilderment – sets in, as you try to figure out what to do next.
You are not alone
Below is the abstract of an article that outlines in more formal terms all that I have described above. If you think it will help you read about other real life patients who have gone through the same spectrum of emotions that you have endured thus far, you really should try to read the full article and not just the abstract. Send me a personal email and I will be happy to help you locate it.
Eur J Cancer Care (Engl). 2011 Aug 31. doi: 10.1111/j.1365-2354.2011.01278.x. [Epub ahead of print]
Incurable, invisible and inconclusive: watchful waiting for chronic lymphocytic leukaemia and implications for doctor-patient communication.
Evans J, Ziebland S, Pettitt AR.
Health Experiences Research Group, Department of Primary Health Care, University of Oxford, Oxford Royal Liverpool and Broadgreen University Hospitals NHS Trust, Liverpool, UK.
Patients with chronic lymphocytic leukaemia (CLL) find it hard to accept a diagnosis of an incurable cancer for which no treatment is recommended and which may not cause symptoms for many years. We used qualitative interviews with 12 people with CLL managed by watchful waiting, drawn from a maximum variation sample of 39 adults with leukaemia, to explore accounts of watchful waiting and implications for clinical management. Patients with CLL recalled being given little information about the condition and wanted to know more about how it might affect them in the future. The invisibility of CLL meant that some chose not to disclose the diagnosis to others. Check-ups sometimes felt cursory, causing dissatisfaction. As symptoms increased, lifestyle adaptations became essential, well before treatment was warranted. Patients with CLL on watchful waiting experience levels of depression, anxiety and quality of life similar to those in active treatment; our qualitative approach has illuminated some of the reasons for the negative psychological impacts. We relate our findings to perceptions of the illness state, doctor-patient communication, and work pressure. We recommend that specialists could better support patients by acknowledging psychological impacts of CLL, actively listening to patients’ concerns, and meeting their needs for information.
PMID: 21883563
Somethings we can influence..
There are many things in life that we cannot change. CLL diagnosis is one of them. But some of the loneliness, confusion and bewilderment can be changed, can be improved. As this article suggests, doctors and specialists can learn a little bit more about the psychology of this disease and how it impacts doctor – patient communication.
And there is something you can do too. Forget the snake oil, the quick fix solutions even you know are not going to work. What works is credible information. People feel better when they get back a little bit of control over their lives. Information – credible, trustworthy, verifiable – that is what is going to give you back your sense of being in charge of your own life. There are no cancer gurus out there that are going to make it all better. Only you can do the heavy lifting of reading, understanding and internalizing the information you need to make smart decisions.
No man (or woman) is an island. We need each other to survive, to thrive, to deal with things that go bump in the night. If you have not told your employer about your CLL, that is one thing. But not telling your family? That may not be such a smart move. Caregivers are an important part of your support system. More often than not, the emails I get are not from the patient himself, it is from someone in his family that cares, that wants to learn, that wants to help. Don’t push people away, don’t isolate yourself just when you need their love and support the most.
If you are the caregiver reading this, I want you to know I have walked in your shoes. It is not an easy thing to do. There will be hurt, there will be pain as you watch the progress of the disease in someone you love. But know this too. Without your help, it will be a lot worse. Without your love, it will hurt a lot more. You can make a difference, whether or not it seems so right now. We are all our brothers’ keepers.
“We can live without religion and meditation, but we cannot survive without human affection.”
“Whether one believes in a religion or not, and whether one believes in rebirth or not, there isn’t anyone who doesn’t appreciate kindness and compassion.”
-Dalai Lama
56 comments on "“Incurable, Invisible and Inconclusive”"
Without reading the entire paper I don’t know if it addresses the possibility that family and caregivers also exhibit the ‘good cancer’ and ‘you’ll sooner die from being hit by a bus’ mentality. That leaves online support as the option which certainly lacks the warm and fuzzy component.
I believe this article in a very succient manner has just described
my thus far 21 month journey. I am reluctant to compare the glide path
of my experiance wiht those who have traveled much farther. It is always
encouraging to find out you are not alone.
Thanks
js.
You are spot on with your article, Chaya!. When I was first diagnosed, I was scared of what lay ahead and tried a few “remedies” that my nutritionist said might keep my immune system strong so as to delay any progression. Two years later I had chemo – could only manage 4 of the 6 proposed rounds of fludara/ rituxin, but went into a nice remission. My family and friends were very supportive and we all celebrated the “good outcome”. Now it is 5 years later and I am still officially in remission, but feel like I am waiting for the proverbial “other shoe to drop”. Because I am doing well, the topic is rarely discussed, and everybody assumes I am cured. I am left alone to do the worrying and the anxiety before each routine visit to my oncologist mounts, as I know I am the getting close to the end of the “typical” length of time of remission…….Does the worrying ever go away? I doubt it. Would be interested to hear how others in similar situations are coping.
Keep those articles of yours coming – they DO help us feel less alone and in many cases help us plan for the next big step.
Thanks. B.Lee
Very well said, all of it. I can only add that the period can be very long in Watch and Wait; Chinese torture being a much more accurate description of that system. Even the haematologist has stated that he very much doubts that W & W has any useful purpose; it only makes the patient’s life utterly miserable.
I disagree with your statement that one should tell ones nearest and dearest; I made that mistake and bitterly regret having inflicted that pain on some of mine. I have kept and intend to carry on so doing, my misfortune from virtually everyone else; I have come to understand that as the only chance of having a normal life. It is now three years since some twit felt gleefully, yes gleefully, obliged to inform me of my misfortune.
There is absolutely no need for treatment and probably won’t be any for several more years. But, as your article says, it is horrible to know that one has an utterly incurable disease, for which it is highly unlikely to be any treatment which makes much if any difference to length or quality of life.
Excellent article, as usual. This one really hit home. I’m at the stage where something needs to be done before too long and the stress is unreal. I also have Sjogren’s Syndrome (the rheumatologist thinks I may have had it before CLL – SS can bring on lymphoma and other fun stuff). I put off my treatment plan appt until after the holidays. I just cannot deal with it now. I can’t see how a month or so makes a difference – so be it if true.
I think one of the hardest facets to this horrible disease is that of the caregiver. My husband is having a very tough time and my heart goes out to him. I would encourage folks to have close family members who are having a tough time. My DH won’t no matter how much I try to get him to get counseling which makes me feel even worse. Oh well, que sera.
Chaya,
I made a copy of this updates so my daughter and husband can read it. Your articles really describe how cll patient feels. You give us hope and courage.
Thank you,
Monique
After living with this “condition” for over 5 years and still without treatment required, I find your synopsis of the psychological pressures that we don’t really have a way to share to be the most accurate description of the course of my feelings and thinking on this chronic cancer. Thank you for the reminder that we are feeling individuals and not merely reasoning seekers of answers about the disease and life. I never suspected that the end of my lifecycle would be a philosophical learning experience at a deeply personal level. Thank you for the Dalai Lama quote also which recognizes that all of us are not believers!
My best wishes to you all as we enter a holiday season.
Orion
Chaya, many thanks for the post. I believe any disease gives the patient the feelings you so vividly describe. The hardest thing in my opinion is this feeling of being alone with your trouble. The caregivers, those near and dear, are trying to help, but eventually you get the clear understanding that you have to face the whole show yourself. Dying is always done alone, regardless of who is near. You have to come to terms with this – denial, resentment, bewilderment – but then you have to embrace it, find your own way to take it in. No need to spend your efforts – and your life, no matter how much or little is left of it – on fighting. By this I do not mean that you should give up and stop making efforts to fight the disease. I only mean that you should accept that yes, I have it, and yes, it will take me to the grave (or something else will). BUT: my life is NOT equal to my disease. My disease is part of my life – but only a part. I pay necessary attention to it – but it does not dominate my life. I was diagnosed back in 2002, had 2 rounds of fludara+rituxan 18 months ago – then my platelet count dropped and treatment could not be continued. I am considered to be on remission as 2 rounds did a good job, but my counts are going up – not as fast, but still. I can say that paradoxically enough my disease made me a lot happier – because I came to value and cherish the things I took for granted before. Now I get a moment of pure happiness every day – at least. For the small and big things that come my way. And – thak you Chaya for this community you created, for me it gave and keeps giving a lot of wonderful and useful advice and support.
Julia R. (Russia – yes, we have it too, in our part of the world ;-))
Chaya:
Your latest article and abstract link are very timely – as I am approaching my two-year “Cancerversary” and still appear quite normal to others, my support network (family and friends) seem to easily forget that CLL/SLL becomes a way of life for us due to its incurable nature. I have to admit that it is somewhat hard for me to believe that my immediately family (sisters) don’t seem to have an understanding of the challenges faced by living day-to-day with this disease – I’m a second-generation CLL/SLLer, our mother passed from the disease after an 11-year battle 32-years ago at the age of 54 (I’m 55) -I guess time does fade one’s memories. I’ve provided a link to your latest article through my personal blog. For my own purposes, would it be possible to receive a link to the full article? Thank-you for all of your efforts and continued support to the CLL/SLL community – you are a “gift” to all of us living with this disease!
Bill
It is such an interesting learning curve being faced with a definite end to your life. With CLL we have a quite specific months and years survival time line. Then from when we have gone through the waiting room, past chemo to stage 1. Most people rush about their lives in blissful ignorance, without their death hanging over them every day. Boy, is it sobering, it immediately sharpens focus and makes you realize what is truly important in your life – who loves you and who you love. It also makes you fearless and therefore a little bit of a loose cannon, because what else is as scary as your own demise?
Julia:
Thank you for the kind words. You are my kind of woman!
I did not create this community. This community has always been there, and it will always be there until someone comes up with a cure for CLL. All I did is create a place where we can meet, share ideas, comfort each other and be a little less alone.
After publishing one of my articles (usually late at night), I stay up to read the member comments. Frankly, they are the best part.
I have been told several times that the caregiver actually has the heaviest burden to carry in this journey, and as a 10 year caregiver of a CLL husband, I believe this may be true. I have gone through all of the stages you mention, and now start back through that list each time an event happens to stir up the fear again.
Ten years ago I remember reading one of the consortium doctors describe treating CLL as more of “an art than a science”. I beleive that is true, and would love to find a doctor who actually treated CLL this way! The load is very heavy to carry, and a doctor who treated the whole patient would help with that load.
Thank goodness we have Chaya and each other to lighten this load a little!
I actually have a different perspective of CLL. Was diagnosed in 2006 at age 55, and since that time I have had 22 CBC’s. Since I’ve been dealing with other medical issues previous to being diagnosed with CLL, the CLL has simply had to take a backseat to much more overwhelming spinal issues and the horrible opiate induced constipation (OIC) associated with the pain medications i take for my spinal condition. OIC is seriously debilitating, and it wears you down. In addition, the OIC, along with spinal bone pain, do not allow a person to work and/or interact in life as they would like to. A person can deal with medical issues for an extended period of time, but at some point your resilience simply wears down. I have been dealing with the spinal issues since 1982, and the OIC issues since 1994.
So, where does the CLL fit in? Well, in the back of the bus, period. I simply do not have the time and energy to be concerned with the CLL. It is more of a curiosity to me. When diagnosed, i essentially told my very fine GP Dr., and also my very good Hemo-oncologist, ‘OK, so i have CLL’. Since i am a scientist I have been interested in what CLL is, and have read the many very informative articles on your site Chaya (I sincerely thank you for your work that you put into your site which is very helpful to so many people Chaya).
Thus, the CLL at this point is just something to deal with later. Yes
my WBC is going up, and up and up, and the other blood parameters are getting near their critical limits where treatment is needed, but i really do not think i will allow any treatment due to quality of life issues. The paper regarding ‘Quality of Life’ that Chaya provided for us previously really hit home with me. So, I will see what happens when it happens regarding treatment.
But at this point i have way to many quality of life medical issues to deal with which makes me not want to attempt any CLL treatments. If I did not have these ongoing other medical issues, i would fight like crazy to deal with the CLL, but I do not see treatment happening. Will see what i do in about a year or two when treatment is estimated to be needed.
Regardless, thank you so much for this site Chaya. The information you provide to so many is unparalleled. And, best of luck to all the folks on this board who are dealing with CLL — do not give up!
Chaya, thank you for another excellent article.
I so identified with the feelings and emotions as you described them. Some of your editorial comments gave me a good laugh (such as not loosing any hair we haven’t already lost since most drugs used to treat CLL do not cause hair loss).
CLL is a roller coaster ride. I was dx 2 years ago with early stage CLL (watch & wait). I had generally “good” prognostic indicators (mutated IgVH, negative ZAP-70) however I have a bi-alliec 13q deletion in about 75% of the nuclei. At dx my WBC/lymphocytes were 12.0/6.8. The 1st year after dx I had a slight increase in WBC/lymphs to 17.1/10.4.
This past year my WBC/lymphs began increasing – they are now 43.8/39.0 so the worry component has definately been added to watch & wait.
There is nothing so clarifying as a face to face meeting with one’s own mortality. My CLL has been a “tough love” teacher and has had many valuable lessons to teach me.
I am sad to see the comments of those who feel they don’t want to burden their loved ones with their CLL. The love and support of my family and friends is priceless. For me love is all about sharing the hardships as well as the joys of this life. I am blessed with a wonderful husband and dear friends who bring much joy and laughter to my life.
I have learned to be much more grateful for all the blessings I do have in my life. CLL has given me a stronger awareness of how precious the blessings are. While I am in watch/wait I strive to enjoy the life I have today – soaking up all the love, joy, laughter and support I can get – then giving back all the love I can. I get involved in what’s happening to other folks in my life – I feel better and it gets me out of thinking too much about my CLL.
I don’t over-burden others with my CLL worries but I don’t hide it from them either. I have explained to them how CLL works. They understand and are super supportive without being intrusive or negative. This is where one will find out who your real friends are. Sad to say some friends are “fair weather” friends – when the storm clouds come they disappear.
My recipe is to find the good folks in your life – let them help you carry the burden of your CLL. It will help lighten your load and bring some joy to your life.
Warm regards – Patti Kruse
Chaya,
As I was re-reading the article and posts,I was reminded of a quote by Alexander Solzhenitsyn in-One Day in the life of Ivan Denisovich:
“How can you expect a man who’s warm to understand a man who’s cold”
Perhaps we expect too much of those who do not have the disease or care for those who do to understand.{?} Which makes this site all the more valuable, and Julia’s post most poignant
It is extraordinarily uplifting to see that someone even considered the difficulty of this disease. Now I know this may sound hopelessly twisted but when I was diagnosed, I really envied people with cancers that cured or killed you. I don’t do well with uncertainty, and watching and waiting is one of Dante’s circles for my type of personality. I told my family and they were wonderful. Then as it became clear I would not drop dead tomorrow, their inquiries waned. I recently had to be treated and did a clinical trial, which was just under two years from diagnosis. It went well on the outcomes side, but was a bumpy ride at best. I tried really hard to keep the sordid details from family and a couple of friends I had told, but at the same time, they rarely asked. So what was my biggest pet peeve? I would be so fatigued that walking across the room was out of the question. I would drive to the grocery store and walking in was too much to contemplate. If I mentioned my fatigue, family members would say how tired they were. Now it isn’t a contest but I realized there is no way for them to grasp what genuine fatigue is. The truth is that they want you well and want to minimize what you are experiencing. I also want to make as little flash as possible. Consequently, nobody gets it right. So I focus on how lucky I am that my kids are grown up and independent, that there is enough life insurance to prevent my husband from becoming a burden on my kids or living in constrained circumstances, and that I still work at a job I love without missing days except for treatments. I have a great doctor in a terrific center and he gets that I will go for broke if some trial comes along that is a tad risky. I have some lousy markers that put me in a less desirable bucket. But I am still here and glad people forget I have this. I told few people at work since it brings out so many unhelpful comments and responses from the “good cancer” to the “I had a cousin who…” to the nonverbal look of pathos that is equivalent to a shovelful of dirt on your coffin. They mean well. I don’t want to be churlish so avoid telling them except on a need to know basis. After my clinical trial, I experienced – and still do – chemo brain. I have always had a close to perfect memory. People have accused me of lying because I say I forgot something or told me it is just age and welcome to how the rest of the world functions. Aaaarrrgh! Lest I sound negative, I have found lots to laugh about and even more I really value. So, this CLL thing is a challenge but the virtual home you have created, Chaya, is one of knowledge that brings understanding and a kind of peace. Thanks so much.
Chaya, thanks so much for hitting our particular nail on the head, yet again. I was also very taken by your account of your trip to India. Your language is so colorful, your impressions so richly conveyed! I felt I’d been there with you.
I’d love to read the complete “Incurable, Invincible….” article.
Since being diagnosed in 1999, I’ve had occasional treatments with Rituxan, lately accompanied by a jigger or two of methylprednisolone. I’m still working very much full-time as a clinical psychologist, treating military members with post-traumatic stress disorder. It’s very rewarding work, and I find that doing a bit of good for others keeps my anxiety about my CLL at bay…mostly. In addition, living large and well in the spaces that are not encroached upon by our illness is very helpful in thumbing my nose at CLL.
I’ll always be immensely grateful to you for pointing me toward Dr. Clive Zent at Mayo. He has treated me with great intelligence and kindness for many years. Thanks so much for all you do, Chaya!
Sherry Gardner
Having being diagnosed with this disease in my mid 40’s I’ve chosen the path of not burdening my parents with my diagnosis. I can do the heavy lifting of the worry in W&W while they can continue through the “golden years” of their lives without waking up every morning with a pit in their stomachs with the knowledge that their youngest daughter has an incurable cancer. That’s a small gift I can give them. We will still enjoy the time we have together but it will be without cancer getting in the way. CLL will take many things from me throughout the course of the disease, but I won’t let it take years of peace from my parents and substitute it with torment.
When time comes for them to know (and hopefully it will be many years from now so it will be a moot point) I’ll let them know. But, they won’t have had to be on an emotional rollercoaster for years. That’s something I can live with. And I think that’s something that helps keep me in a less stressful state as I go through this journey.
PS – Clarrification here. After reading some of the posts above, I respectfully disagree with what some of the fine folks on this board feel regarding ‘Watch & Wait’.
For example: “I can only add that the period can be very long in Watch and Wait; Chinese torture being a much more accurate description of that system. Even the haematologist has stated that he very much doubts that W & W has any useful purpose; it only makes the patient’s life utterly miserable.”
In my opinion, the ‘Watch & Wait’ is a gift, and the longer the W&W is, the better since you can live your life to it fullest over that extended time period. Why treat W&W as a torture period, when it can be used to live your life, love the folks you love, and know that you have a chance to do that as opposed to a sudden illness, or tragic accident that results in death before you can tell those you love how you feel about them.
Take the Watch and Wait and use it to your advantage while you can. LIVE YOUR LIFE to its fullest. Be grateful that you have a time period where you can function normally before the adverse symptoms of CLL hit you. Again, use this W&W time to your advantage.
Now, at this moment, I seriously feel really beat down due to OIC, and spinal pain. Plus, the fatigue possibly may be due to 4.05 RBC & 12.3 HG??? Regardless, I am going out for hard walk before it rains. Respectfully, drp
Dear Chaya,
Thank goodness you did create “this place where we can meet.” I have been through most of all you describe. Yes, I do need this place.
Take care.
Love and Many Blessings,
Rita
This article struck a few chords for me.
I was afraid to tell anyone about my diagnosis for a few weeks, but when I did, the outpouring of support was terrific. It assured my husband and me that we were not alone, and that was very helpful in getting us through the initial period of adjustment.
I found your website soon after, and it helped me understand and arm myself with facts and information. That helped me feel like I had at least some power in this situation.
Then I found a great hematologist, and after introducing himself, the first thing he said was, “Tell me where your anxiety level is on a 1-10 scale.” Amen! He understood that while many of us have no physical symptoms at diagnosis, we all have an emotional or mental hurdle to confront in dealing with the fear evoked by the news of our cancer.
I’m very fortunate to have a good support network, a great doctor, and, because of your site, access to high quality information. These things make all the difference for me.
My CLL diagnosis was May 9th. I am a widow and my children sort of think of it as nothing to worry about. My husband had his first heart attack at age 37 and I lived the next 25 years “waiting for the other shoe to drop”. That went away when he died. After my diagnosis I felt that same feeling come back. But this is MY disease and I choose to no longer wait for the “bad” to happen. I joined a wonderful support group. I also attend a variety of classes at a hope and wellness center. I went to Adult Cancer Camp (Camp Bluebird) in October. I met wonderful strong people who have lost their hair, breast, bodily functions etc…these people give me hope. I also volunteer at the hope and wellness center. I feel so much better when I do “service” for others. I will meet my disease head-on if and when it gets worse. Life is too short to worry about tomorrow…don’t control it anyway. I WOULD love to start a support group in my home town just for CLL patients. What a great goal to have : )
I was diagnosed with cll when I was just turning 58. I’m within 5 months of turning 62 and this is the first time I’ve spoke up. My wife has walked with me at every Dr appointment. My subscribition to CLL Topics & Updates always arrives to give me a hint of what’s next. Sometimes I show her something, but most of the time I decide not to. I’ve got several other health problems, just as most of you, but I could have lived out my life without cll, just as all of you. Reading your comments are an inspiration. Maybe that helps us all in some way. TNX -Jas- W&W
Dear Chaya,
Thanks for another wonderful article. It might be helpful to some people reading this who are newly diagnosed with the SLL variety of CLL to be reminded that SLL in some cases may be cured, not just treated. (I was diagnosed with CLL 2 1/2 years ago, but the great doctors at NIH now think it is SLL instead.) You published a great review of SLL by Terry Hamblin which suggests that if SLL is restricted to one or a few lymph nodes, it may actually be curable by radiation treatment. So for a few people, their condition may be “invisible and inconclusive,” but not necessarily “incurable.”
Chaya–thank you so much for helping this community live, and for this article in particular. I was diagnosed three years ago, at age 50, and your description of the various emotional phases is spot-on.
Chaya, it’s like you had written about me and my current status of CLL! I had my first really bad day yesterday. After eight years of ‘easy going ‘(i got diagnosed with CLL at age 42), my hematologist told me yesterday that I probably will soon be a case for chemotherapie. Meanwhile, the spleen is two times bigger than normal, 130,000 leukocytes. I was sure that I would be the exception. Never ever any treatment necessary. Especially because another hematologist predicted several years ago that I will probably never get any treatments – because of all my very good prognostic factors, and because of my extremely slowly increasing of white blood cell count. And because of all my efforts – lifestyle change, herbal potions, detox, etc. I was convinced that I have the white blood cells under control – and not vice versa. Now I am clearly in the phase of confusion. What should I do? Why caring about chemotherapy, if there is still no cure? Does my life is soon coming to an end? Do I have the strength and the will to defy the coming years this weird disease? Despite my communication about CLL to friends and family, I only get very little support, even from my husband. No one can imagine that I am suffering from CLL and that CLL is not curable. The disease is kind of too abstract for them. In particular because I still look healthy, strong, and spreading a vibrant optimism. They still do not accept this diagnosis and some of them keep going on cheering me up with “you’re strong you will handle that” . This attitude may also be a chance. It prevents me from giving up. I would probably act like that if many people would treat me like a incurable patient. I still deeply believe that I am able to defeat this invisible threat. The hope dies last.
Dear Chaya,
Thank you so very much for your informative articles. When I was diagnosed in 2009 my daughter immediately found your site and we have all been reading your articles ever since.
I feel most fortunate because I have an excellent oncologist/hemotologist who is extremely caring. When I had my first appointment with him he spent close to an hour with my husband and me. He never told me I was lucky to have a “good cancer”. At my next appointment he said he wanted me to see Dr. John Byrd at Ohio State and he called Dr. Byrd and made my appointment. I think you are familiar with Dr. Byrd’s work so you know how happy I am to be his patient too. I see him yearly.
The Norton Cancer Center here in Louisville also provides the services of a Behavior Oncologist who goes one step further in providing emotional support.
I am still at Stage 0 and hope to stay here for a long time but who knows. One of my favorite Bible verses reminds us that “This is the day the Lord has made, let us rejoice and be glad in it.” Whenever I feel nervous about my disease I remember this and try not to waste an otherwise nice day by fretting.
I am also fortunate to have been diagnosed when I was 74 not 47. I have a wonderful family, a devoted husband, and several circles of dear friends. For all this, even the mention of Rituxan can send me into a blue funk. However, I will deal with that when it comes, if it does.
Again, thank you for caring about of all.
Sincerely,
Jane O’R.
I am the carer. The 40yo patient had 15 cycles of the intended 18 cycles of FCR + campath and then decided that he could not support the last 3 cycles due to the pain. The doctor said that he was at 70% towards CR. Now his coping mechanism is to totally ignore the disease and it is not a subject that I feel I can bring up until he is ready.
I feel I should be doing something – at least learning what I should be watching for, what might be the consequences of not doing any check ups, preparing for the end cycle about which I have no idea what to expect – even if no one can tell me what to expect. I imagine that pain management will be an important aspect (palliative care)
Any comments advice or experience would be appreciated.
Been the ‘denial’ phase; wondering if I’m moving into the ‘resentment’ phase and hoping it’s a while longer before I enter the ‘bewilderment’ phase.
Good article – thank you for this and ALL your posts.
I read them all and they are all appreciated.
“There are no cancer gurus out there that are going to make it all better. Only you can do the heavy lifting of reading, understanding and internalizing the information you need to make smart decisions.”
So many people don’t realize this, and even if they do, the heavy lifting gets old after a while. Thank you again for all you do to help us.
Love the article- sure says how I feel! If I had a penny for every one who said best kind of cancer to have…yeah.
I am an oncology massage therapist and every day I work with cancer patients at all stages of all types of cancer. I became an OMT after I was dx with CLL in 1998.
Unless I missed something, this review misses what is arguably the most important element of any cancer journey. Don’t waste your energy on what you can not control. Do aggressively work at the things you can control.
Determine to be the happiest and healthiest patient on the planet for whatever stage your cancer is. And then do it. It may well be the hardest thing you have ever done. It will be mostly things you knew years ago that you should do but there were always perfectly good reasons to do them later.
Don’t put anything in/on your body (food, alcohol, tobacco, illegal drugs, OTC drugs, medically prescribed drugs, skin creams, etc) unless you know they are 100% wholesome, clean, pure, free of chemicals and right for you. At long last, listen to what your mother told you about plenty of water, sun, exercise, sleep, relaxation and worthwhile work. Take vitamin D to make up for the sun you don’t get and take supplements to make up for the elements you don’t get from foods grown in depleted soils. Counter stress from the things you can’t control with psychotherapy, meditation or massage.
You will undoubtedly be healthier and happier than you would otherwise. You will be pro-active on your own behalf. You will feel good about yourself. And, you just might make a significant difference in the course of that “incurable, invisible and inconclusive” disease.
One man’s opinion.
I am caretaker to my husband, who was diagnosed in October 2007, by accident. Knowing his personality, it would have been better had he not found out then, during the W & W stage. His attitude at the time, was to find out what chemo would work to erase the disease. When finding out you don’t get rid of it, that was a real blow. Everyone’s individual personality will guide how they (and we caretakers) deal with this disease, and I truly believe many do well with this new reality, and eventually cope once they know what they are up against. Reading through these posts, I really identified with Jswift426. How family and friends reacted then and how they react now is spot on. My husband has been through chemo, could handle only 3 out of the 6 CFR lite, and his remission is holding 18 months out. This is little comfort for him because of his ongoing and persistent fatigue. The doctor shrugs this off all the time, otherwise they are doing what protocols indicate with regards to the Rituxan maintenance, etc. So, we should feel more positive daily, but again a person’s personality guides how they act and view any given situation. In our particular case, I would love if he would go to a support group, but it’s not his thing. The burden is heavy for both of us, and I want to try to find more ways to deal with this on a lighter note. After 35 years of marriage, I know you can’t change a person, but you can make life easier, less stressful when possible, and we will work through whatever is necessary. I have learned a lot on my own over time, but I truly believe this website is the best out there on this topic, because it is driven by a woman who has been there, and knows how to tell us all the necessary and important information, in a way we can all understand. Thanks to Chaya and to you all for being there…with your own individual paths through this disease.
I have been watching,waiting and worrying for over 3 years. I am now 69.
I started out with WBC of 12000 and am up to 21000. Since neither passivity nor long patient watching is my thing I have turned to organic diet and green tea (following the Mayo protocol) as well as increasing my exercize, washing my hands with greater frequency, whipping out a mask on flights should I be sitting anywhere near a cougher or sneezer, trying relaxation techniques to handle stress and majorly, reading CLL Topics with great devotion. In other words, despite not knowing what of these activities if any will effect my numbers, I find it helpful to FEEL like I am doing something on my own behalf. So whether organic foods really make a significant difference on the biochemical level they help me on the psychological level and that is good for me. for you?
One of the most difficult things about W&W for me was a feeling of being an imposter when I’d go to support groups or for Cancer wellness programs. You couldn’t tell I was a cancer survivor in comparison to the others. But i needed the support and the information too. I knew that W&W might not last forever and had a darn good idea of what could come after, as my dad was diagnosed with CLL in 1985 and died after 5 years of hard fighting with this disease.
I’m five years in remission now having had 6 cycles of FCR in 2006. My one lasting effect is a severely compromised immune system, to the point I’m on IV Ig every 8 weeks since Spring of 2010. Thankfully insurance pays the majority, cuz that’s not a cheap treatment. And I do pretty well till shortly before the next treatment is due.
My husband, my caregiver, has been so very supportive. But I hate to see the added stress on him. In the current economy, the fear of loosing his job and our health insurance is, at times, overwhelming.
I too take the handful of pills (vitamins & minerals), drink my green tea, practice yoga and meditation. Brew a tea from dried mushrooms.. What helps? Who knows.. I only know the things I do make me feel as though I have some slight control over my life. I know it’s not much, but every little bit does help. I won’t spend our retirement on some ‘miracle’ cure, but things within reason, those I may try.
I did tell my mother and my sons when I was diagnosed. Mom was in a Nursing Home and I wasn’t able to visit her as often as usual due to my compromised immune system. I couldn’t let her think I forgot her, she had to know why I wasn’t there. My sons? Even though they lived in distant cities, I felt the need to share my news with them. All I could think of was how bad I’d feel if they were seriously ill and didn’t tell me.
No one really understood the fatigue and shortness of breath I had shortly before W&W was over and during the year of chemo treatments. When walking up one flight of stairs in my home had me gasping for breath… The three flights with luggage to my son’s condo in Chicago nearly flattened me. Thankfully (timely, isn’t it) I’ve more energy and breath now.
Chaya, you’ve been such a source of information and sanity. Thank you for your wonderful ability to read medical gobbledygook and turn it into something we can understand. Thank you for the love that is evident in every post you do.
Michele
Chaya, I had to tell my colleages because I fell at work, my knees buckled and eventually my husband let the cat out of the bag. I teach at a primary school and have never come across such compassionate and caring people. They recognize my occasional “not so good days” and seem to empathize with what is going on. The support is unbelievable although nothing is physically visible. I am on W&W and my Oncologist is in no hurry to treat. I have a mission in life and my health is not an issue but a neccessity, therefore the emphasis is on educating young minds to be compassionate and caring for each other as well as open to all they can learn. I love my job and I love life, I am thankful this year for being alive and able to give as much as I can back to society. Wellness is a state of mind. Happy Thanksgiving to you!
Chaya, I read all your posts and most of the letters too. I’m so glad for all and I’ve had CLL, the “good ONE” since 2003 now. I’ve run through some of these emotions too. My brother-in-law told me I’d die of a heart attack first so not to worry. Any sympathy has come from my daughter and a few close friends, not family. I have a few other health conditions so why worry too much about this one. I keep busy all the time with local city boards and farming — it’s one day at a time. Keep us going Chaya!
When we talk about loving kindness, compassion, feeling a part of something, it makes me think about the work of scientists like Esther Sternberg, a researcher at the NIH who wrote a book called ‘THE BALANCE WITHIN’. Her work builds on the work of Hans Selye (the scientist who brought the word ‘stress’ from physics to medicine and who was a friend of her father). I have listened to hours of audio of Sternberg talking in layperson’s language about the molecular interactions between the mind and the immune system. I recommend having a look at this work. She also has a great sense of humor.
Chaya, thank you as always for your most informative articles. If it weren’t so serious and sometimes emotionally debilitating, I almost had to laugh reading this recent one, since it described virtually everything I’ve gone through or done in the almost two years since I was diagnosed with the “good cancer.” Indeed, I have tried all the “magic potions” you mentioned from going to several nutritionists (and getting several different answers) to raw food (gave up on that quickly) to juicing, meditating, working out on a trampoline after reading that rebounding is good exercise for circulating lymph fluid (since the lymph system doesn’t have a pump like the heart), to popping a dozen vitamins daily and giving up gluten and other foods I once enjoyed and adding others because they are considered healthy. Yes, I went through all the “stages,” you wrote about.
It was good to read this particular article because it addressed W&W and was reassuring to know I’m not alone nor am I crazy to sometimes experience the depression, moodiness and accompanying emotions of this disease, which I have kept to myself other than sharing with a very few intimate friends and immediate family because it does not define me and I appear basically healthy — but, how can one be healthy if they have cancer? Since I have no support other than reading CLL Topics, there have been a few moments when I have felt like yelling it from the rooftops.
My doctor, who although he medically enjoys a good reputation, emotionally falls into the category of being dismissive and in fact, displays frustration and irritation when I come in with questions. At my last checkup, when I asked for a copy of my blood work, he literally snatched the report from his table and stalked off to make me a copy, telling me I have “to trust my doctor.” I explained I do trust him, but need to understand as best as I can what is going on with my body. He also lets me know when I’m on the examining table that he hasn’t much time, because his next patient is in need of bone marrow aspiration or something more important because my “good cancer” is in the “watch and wait” category.
I wonder, as I write this note, if you might possibly consider a workshop explaining the blood’s complexities — and if other CLLers would be interested in learning more about the blood’s makeup from the obvious WBC count to its other components. For example, even though my WBC has remained stable with some fluctuations, the platelet count has dropped. I read and compare all my blood work reports and although most of them are “within range,” nevertheless worry about what seem to be falling into the lower spectrum of the desired range, unless these fluctuations are also to be expected.
I will write you a separate email because I am interested in receiving the full article. I also feel it’s important to share this information with my doctor at my upcoming checkup next week. I guess it’s natural for CLLers in the W&W stage to get antsy when they close to blood-work and node-examination time.
On another note, I thoroughly enjoyed your travelogue and the accompanying pictures. I wish you and yours and all my fellow CLLers a blessed Thanksgiving.
Chaya,
From the bottom of my heart, thank you!! I felt like your article validated what I have been experienced in the last year & half.
Yes I even deferred telling family and friends until after the holidays, dx 12/18/09, treatment started 2/3/2011. I didn’t want to burden anyone.
I have come to acceptance there are things I will never be able to do if I want to live a reasonable health life…no more dreams of doing an Ironman triathlon, marathon these are to strenuous on a fragile immune system.
My plans to live to 120, well that’s been shot, however, thru all I have personally grown beyond belief. My relationships are my comfort. I still have days when I’m all alone in the shower, I cry. Why? I’m like everyone else, still scared of dying. Ah but I have the “good cancer”, right!
Many blessing to you and your family thru the holiday season!
Aloha, Catherine
Chaya,
Allow me to join the rousing cheer for your usual humanistic/compassionate/patient oriented view on CLL matters. This one hits home. As you championed the Mayo Quality of Life Survey previously which bore out this very point, you are keenly aware of how CLL really affects us. Of course having lived with it you are even more aware of the realities.
Roughly half of us will be involved in treatment earlier than we might like. This is no longer ‘the old man’s disease’ so even for the youngsters in the crowd, the wait can be devastating; impacting careers and other life agendas. Thus, for all of us, the wait, worry and lack of understanding frequently brings more angst than needs be. The Oxford article, which I have not completed should be passed around to all of our treating physicians, not just the oncology groups. All need to understand how our lives and those of our carers are impacted, if we’re fortunate enough to have those.
I do have one caution and concern regarding that article however. while they do sate that “A minority of patients never progress”, they also state that “””Since inpatient treatment is
rarely needed, CLL patients tend to have less contact with
their specialist than those with acute leukaemia”” This may sound alien to us in the US, We need to see this in it’s proper perspective. This IS after all, a UK journal/report. It’s my understanding that in the UK and in parts of Canada, Oral chemo is becoming more common. Some of our new trials involve drugs that employ the oral method as well. These developments will tend to remove us even farther from watchful care during treatment times as well. I’d hate to envision a scenario where the majority of us first go thru the watch and worry phase to the shuffle off to buffalo with your pills, and then back to watch and worry… eeks. If one connects the dots, sadly this may be what we are looking at in the not too distant future if we don’t begin to advocate for equal rights and understanding as Cancer patients NOW. The cynic in me says as long as the US remains a cost based medical system this won’t happen, however since the shove seems to be toward equal treatment for all, and I am not against that concept, it may be what we face in the future. If we don’t push now, we may lose the chance.
Oral vs IV has both positive and negative aspects. One of the largest negatives being the relative lack of oversight during the course of treatment. For those of us who have gone thru treatment, we know all too well how decisions as to when a quirky feeling is potentially lethal can become an all night worry, or worse. In addition, I fear that many patients will view oral chemo as ‘less dangerous’ than IV simply due to the method of introduction. IV is a more immediate delivery, and is given under someone’s watchful eye. Pills are common prophylactics we are accustomed to, but we also know how treacherous some of those can be. Pills are NOT in themselves ‘safe’. Nor does it mean that if one is on oral medication that they require less monitoring.
While I am pleased to see the concerns voiced in this report, we need this, but at the same time I am concerned that our treatment modalities may be pushing us even farther into invisible-ness. A few of us plan to pass out copies of the full report to all of our doctors, and carers,but would welcome any suggestions as to a patient advocacy movement, a voice that can be heard now, in light of the move toward more oral drugs.
just back from my second check with Dr. Zent. Partial response is what we got with all six PCR. It was no picnic. dx 2007, and I could ditto any and all of the comments on angst, and ivisibleness unleashed above. back in the hole. but feeling a bit better. in no small part thanks to your guidance.
Thanks Chaya, for all you’ve done and do. Wishing you and yours a healthy Holiday Season.
Bethcat:
A big “Thank You” to you and the other members for your kind comments. It is only recently that I have started to venture out from behind the “just the facts ma’am” cover of a life-long physical scientist. Writing about emotional things is scary business – what if no one likes it, or worse still, what if people laugh at it? Thanks again, you guys. You are a very generous audience.
Getting to the subject matter of Bethcat’s comments: yes, this is a UK study and reflects the relationship between “experts”, local physicians and patients in that part of the world. I suspect the “oral medication” they are talking about is good old chlorambucil, a drug that is still very much the frontline therapy for many patients in Europe. But even fludarabine is now available as an oral pill in Europe.
Why do we favor intravenous version of fludarabine in the US? For starters, the doctor’s office can charge an arm and a leg to the insurance company for infusion charges, rental charges on that nice reclining chair you sit in while getting infused, nursing charges – even if the nurse spent only a couple of minutes checking your vitals. Money makes the world go around. A prescription for oral fludarabine pills that you fill at the local pharmacy and take at home will hardly merit the same kind of charges. Who pays for all these charges? Your insurance does, but in the final analysis, you pay for it. With your co-pays and your insurance premiums, your taxes, whatever.
On the other hand, as Bethcat points out, there is a real advantage to getting serious medications such as fludarabine in the doctor’s office – even if you don’t particularly enjoy being poked by sharp infusion needles. Things can go wrong. It is nice to have doctors and nurses close by. There is the possibility of falling between the cracks when more and more of cancer therapy is carried out at home, by means of oral medications. Chlorambucil is low on the scale of obvious adverse effects (its adverse effects are more insidious, if used at high dose or long duration). I worry about other drugs such as Revlimid, oral fludarabine and now oral CAL-101 and PCI-32765. I have heard from more than just a couple of folks on CAL-101 who ran into trouble with lung inflammation – which morphed into very serious pneumonia before the dots were connected – because the patients were told to take the drug at home and not seen by their doctors on a daily basis. But there is no doubt that “out-sourcing” drug delivery to the home (through the use of oral pills) is a huge cost saving, and not something to be sneezed at in these days of budget cuts and belt tightening.
I have no answers to the complicated questions of funding for different healthcare issues raging in this country and elsewhere. If you feel strongly about it, please remember to keep it civil, keep it non-partisan. I want this site to be welcoming and friendly to all comers. CLL is a non-discriminatory cancer. Your political persuasion or religious affiliation does not count, as far as CLL is concerned. Same goes for this website.
Chaya,
I have to agree with Julia from Russia. I was diagnosed over six years ago and at that time the only credible information I could find on my disease was CLL Topics. It led me to other information and allowed me to start to develop an understanding of what this was and how I fit into the picture. Some of the early articles I read about the three “buckets” and what this really was all about helped me to come to grips with my diagnosis. Then I got aggressive and decided that the only way I could deal with this was to become as informed as possible. As I learned more and insisted that my doctor tell me everything that was going on (I will say I was lucky in having a very knowledgeable doctor who was open and willing to keep me in the loop)the veil of fear and anxiety began to lift. I believe that knowledge is power and when you are faced with a situation that you can’t remove, isn’t it a good idea to have as much information about it as possible? That is the only control that we can wield.
I realize that everyone has their own cross to bear, but I don’t quite understand how having the people around me included in my life-weather for better or worse-can be construed as putting a burden on them. My experience is that by keeping no secrets, I can enlist the energy of the people around me to help my energy stay up. We’re all in this together and I think that the CLL community can use and benefit from everyone’s input.
Chaya, I want to also add to the statements made that we owe you a huge THANK YOU for everything this site does for us. Six years ago I think I understood why you were working on this project. It would have been easy for you to hang it up after “Harvey’s” time. I, for one, still look to this site regularly to keep up on information and solice and it always comes through. This site more than anything I can think of helps me to keep me life in perspective in regards to my CLL and that is no small thing.
Bob
Thank you Chaya for the article – it does hit it all except one thing – HOPE….Yes we all hit all of these stages as we go thru this process…but most of us continue to hope we are the part of the group who could be in the first generation cured. I was happy to pass this on to family – but then have been bewildered by the lack of hope in it. Are they now going to look at me after my first tx w/those eyes that say – this is it – the beginning of the end…I think NOT! I want to continue to hope that we will be the one’s as part of the cure…
It was not too long ago that my uncle was dx w/NH Lymphoma in 1997 – and was given 6 years to live…he has lived 14+. From my understanding NHL is now considered curable.
You have always given me hope. Please give the same to our families…even tho it may not be an easy road ahead – or as we ‘wait’…but we cannot consider this a ‘death sentence’ or we all might as well eat all we want, lay around on the couch all we want…and cry every day w/depression…Instead I choose to live each day to the fullest. I do not want any sympathy. I want my loved one’s, friends, and medical staff to put that sympathy energy towards the cure and quit showing any sad eyes around me – it’s depressing!
I have not cried in years – but this article got me…I am going to get up tomorrow morning and start a fresh day – living – not dieing!!!
P.S. I know – classic ‘denial’…but still hoping!! I am a fiesty one!
shannonhickey:
Touché.
In my defense, my review was an attempt to faithfully describe the findings of the professional paper under discussion.
I try to distinguish between reporting the findings of professionals and my own two cents as a layperson by using “Editorial” sections. If this review had an “Editorial” section, it would have been the last section titled “something we can influence..” And in that section I should have emphasized the need for hope, the reason for hope, and the value of hope. You are justified in your complaint.
Today if one were to have to start therapy what would u suggest to a 55 yearold male with a positive fish report, No deletions yet, WBC 80K, unmutated platelets 119, overall feeling fine and Hemoglobin in normal range. How long down the road would therapy be for me. just curious on your thoughts. Overall healthy and feeling fine
chief:
No way of predicting the future. No one has a crystal ball that clear, not even the experts. For patients with good prognostic indicators and general good health, there is reason to hope for a long period of Watch & Wait. When it is time to treat, the conventional wisdom is that for fit patients with no contra-indications, FCR is the therapy of choice. Whether that choice becomes obsolete and other less aggressive but equally effective therapies become available down the road is anybody’s guess.
Unmutated IgVH, “normal” FISH would suggest middle bucket risk profile – but that is just a rough guess since I do not know details of the other prognostic indicators.
My apologies Chaya…I hit a real low this past week…Cried every day – which is not like me at all. I needed to..and needed to pick myself up again..
You are the Best – i appreciate your information, time advocating, time w/this website and really enjoyed meeting you a few years ago in Ontario for the CLL Canada conference. You are fiesty and driven to help find the cure we all hope for. You have searched the globe looking for it..and lost your husband PC to this awful “quiet” cancer.
I am frustrated that with the 5 years i have been in watch and wait not much has changed regarding treatment options…Most of us get this lucky chance to wait – but where are the better treatments? Great article – I hope a copy lands in each CLL researcher’s hands along w/our regular docs:) I’ll be doing my part to share this one like many others…..My all time favorite article of yours is the “lance armstrong effect” because all of that good sweating massages my lymphs making my body feel great, my fatigue lift, sleep heavy and my mind find ‘balance’ to all the stress in life w/CLL. Blessing, Thankfulness and Love to you and your family Chaya ~ Shannon
As I read your article this evening. I felt the anger and frustration build in my soul. I am the fool you spoke of that refuses to tell her family out of fear. Not the fear of their understanding but the fear of their rejection and their uncanny past presentation with illnesses. I’m afraid they will no0t be their for me as I need, and it is easier to do it alone than have clarification of their uncaring to my issues at hand.
I wish I could share it with someone. I recently became pregnant and miscarried this past weekend. The babies father is not so understanding to my condition and I realize this is my fault, because I have not wanted to share it with anyone because I have issues with trusting someone that says they will be there for me and then they always seem to disappear.
I can’t handle those I love leaving me anymore. Am I wrong to do this on my own? I am glad to have read your article tonight. It brought out so many questions for me. I have a lot to think about. I heard about some new experiments they are doing to treat CLL and am trying to study more on the subject. My WBC’s are rising, and My RBC are droping more all the time. I am getting nervous that it is going to be decision time for treatment options soon.
Not only have I lost the babies, but the babies father and
I are not talking, so I will have to do this alone. I dropped 43 pounds in the past three months and fatigue is increasing, along with sweat through the night. I am trying to keep it all to myself, but it is becoming inevitably obvious to my family that I am getting weaker and they are questioning whether
I am in a depressed state of mind or on drugs. I don’t do drugs and I am sad at times, but
I would not call myself depressed.
dald:
Often sharing problems with appropriate (qualified, trusted and respected)other people can lead to some sense of relief and/or workable solutions.
Here is a list of non-professionals and professionals that you may find helpful — friend, relative, neighbor, co-worker, clergyman/chaplain, licensed social worker, marriage counselor, psychologist, physician.
Best wishes!
Good read, sounds like my life thus far. I told my immediate family, husband and children and my original family when I first got CLL in 1995. My father said the diagnosis was wrong and I would of died already. My mother agreed with him. My sisters were pretty much in agreement with my parents. My husband and two daughters have been in and out of denial for two decades. Since I had to quit work with other disabling diseases I have acquired my husband is no longer in denial. My two daughters still question things. My sons are in fear. My sisters and mother are swinging in and out of dis-belief. My father is no longer with us but he is probably somewhere in the ozone layer freaking out because he was so wrong. I’ve never had a problem accepting what was dealt to me but everyone around me has issues with it. The hurry up and wait program that comes with CLL is difficult to navigate and it is Chinese torture. Over the years I’ve struggled with depression and a whole array of weird symptoms from the hurry and wait CLL. Denial was never part of the program for me. I’ve always had some lympth node or infection that posed problems from the get go.
I am so glad for all this info! My brother was diagnosed about 6 months ago, He is 49 years young. When he got his initial diagnosis, we read and read all the information available on CLL. I personally hung on to the Oncologists preference to emphasize hope and generally stopped researching thinking my brother would be one of those people that “did fine for years”. The conversations about CLL have dies out. Recently a friends sister changed the way I was thinking about this disease as she shared a relatives experience with CLL. It shocked me out of denial (I guess that’s where I have been). I hope I have been listening well enough to my brother and being a good enough support. He doesn’t talk about it as much and I wonder if this is because of the various reasons stated in peoples comments. I don’t ever want him to feel alone. Thank you everyone for sharing your feelings and waking me up to the possibilities of this disease. I want to be informed so that I can be as present as possible for him.
Laujean .. wonderful that you are watching your brother’s back. Also good to let him know that you are doing so. Having support in place leaves us all freer to lead our lives. You will want to check out Chaya’s information on the NIH Natural History Study of Untreated CLL Patients. If your brother enters it, he will be carefully watched by a fantastic staff of CLL experts. You can find it under the topic “A Clinical Trial Perfect for our Times”.
Wishing you and your brother all the best,
Lynn Samuels – dx 8/07 and participating in the NIH study
To B. Lee and others who “feel like I am waiting for the proverbial “other shoe to drop”… left alone to do the worrying and the anxiety before each routine visit to my oncologist mounts”, etc. When I told a friend (and long-time breast cancer survivor) about my CLL, she recommended a book, “Dancing in Limbo: Making Sense of Life After Cancer” written by Glenna Halvorson-Boyd and Lisa Hunter, both cancer survivors. At first I thought it didn’t apply to me because the people who were interviewed for the book all have some hope of a cure, but as I read on, I realized that we are all dealing with the same issues. I found this book reassuring that I was not alone and not crazy.
Lois
Just read Firf (Lois)’s post, with the mention of the anxiety before the periodic oncology visit .. and wanted to share a technique that has helped me reduce some of my anxiety. I realized that too much tension was created by not knowing my “numbers” until I entered his office. Then .. in the short time allotted for my appointment, I had to digest the news, create questions about anything that had changed etc. So .. I arranged to get my numbers in advance, so I could study them, chart them, google surprises. Then I had split the focus into two points .. one, seeing my numbers and the second, seeing and discussing them with my oncologist.
I always get my blood drawn at a satellite lab down the street from my apartment and have become friends with the phlebotomist. Now he goes into his system and faxes me my numbers the next day. I use an efax number, so they come in as a .pdf file attached to an email. Or, you can arrange for your oncology office to fax them to you before the appointment.
Lynn
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