The Elephant in the Room
Your local oncologist told you CLL was the “good cancer” to have, you should therefore go home and be happy.
Did your spouse heave a huge sigh of relief and quit worrying forever more? Did your kids lose that scared look and go about their happy days of childhood? Did you buy that line, yourself? If you did, you are made of sterner stuff. Or you have your head stuck in the sand or some place else where the sun does not shine. Most of us smelled a rat right away. How can an “incurable cancer” be a “good cancer”? This kabuki dance of switching from “Watch & Wait” when nothing much happens to life threatening emergencies that leave you breathless with anxiety – how does one cope with that kind of mind-bending transition?
Quality of life: patients and their caregivers
Yesterday one of our members who is contemplating a mini-allo stem cell transplant asked me for a good reference article dealing with quality of life of patients after they go through the procedure. Wise man. Most often, I get requests for survival statistics, new approaches for treating graft-versus-host-disease, etc. Very few ask about quality of life the day after. Well, here is the article I sent him, just in case any of you are interested as well. The abstract is below, you can read the full text by clicking on the link.
Blood. 2009 Jul 2;114(1):7-19. Epub 2009 Mar 31.
Quality of life after allogeneic hematopoietic cell transplantation.
Pidala J, Anasetti C, Jim H.
Department of Blood and Marrow Transplantation, Moffitt Cancer Center, Tampa, FL 33612, USA.
High-dose therapy with allogeneic hematopoietic cell transplantation (HCT) offers effective control and potential cure of hematopoietic malignancies, but with the cost of associated morbidity that includes adverse effects on quality of life (QOL). A growing body of literature has characterized this impact. Longitudinal studies suggest early moderate impairments that largely return to pretransplantation levels by day 100; the majority of studies suggest that greater than 60% of patients report good to excellent QOL in years 1 to 4 after HCT. Comparisons of allogeneic HCT with autologous HCT and standard-dose chemotherapy suggest impairments in QOL and a different trajectory of recovery in allogeneic HCT, but these conclusions are limited by confounding variables. Cross-sectional studies suggest larger and more persistent decrements in QOL in comparison with matched noncancer controls and population normative data. Acute and chronic graft-versus-host disease (GVHD) are significant threats to QOL. Behavioral interventions show promise to maintain or improve quality of life after allogeneic HCT. The review concludes with recommendations to investigators and clinicians as the state of this research advances.
PMID: 19336756
A while back Mayo Clinic conducted a CLL patient survey, in cooperation with CLL Topics. It was a massive survey (thanks to our dedicated and pro-active members). Results of that survey were sliced and diced and published as a series of articles, yours truly was a co-author rubbing shoulders with the like of Dr. Neil Kay, Clive Zent, Tim Call and Tait Shanafelt of Mayo.
Br J Haematol. 2007 Oct;139(2):255-64.
Quality of life in chronic lymphocytic leukemia: an international survey of 1482 patients.
Shanafelt TD, Bowen D, Venkat C, Slager SL, Zent CS, Kay NE, Reinalda M, Sloan JA, Call TG.
Mayo Clinic College of Medicine, Rochester, MN 55905, USA. shanafelt.tait@mayo.edu
Although a diagnosis of chronic lymphocytic leukemia (CLL) can have a profound effect on the quality of life (QOL), few studies have objectively measured the QOL of CLL patients or compared it to the general population. We conducted an international, web-based survey of patients with CLL using standardized instruments with published population norms to evaluate fatigue and QOL. Co-morbid health conditions were assessed using the Charlson Co-Morbidity Index. Between June and October 2006, 1482 patients with CLL responded to the survey. The physical, social/family, functional, and overall QOL scores of CLL patients were similar to or better than published population norms. In contrast, the emotional well-being scores of CLL patients were dramatically lower than that of both the general population (P < 0.001) and patients with other types of cancer (P < 0.001). QOL scores were lower among individuals with advanced stage disease (all P < 0.05). Factors associated with lower overall QOL on multivariate analysis included older age, greater fatigue, severity of co-morbid health conditions, and current treatment. CLL has a profound impact on QOL at all disease stages. The effects of CLL on QOL appear to differ from that of other malignancies with a more marked impact on emotional QOL. Research identifying efficacious psycho-oncologic support interventions for patients with CLL is needed.
PMID: 17897301
If you thought you were alone in feeling blue, here is your proof that you are in the majority. CLL patients suffer from loss of emotional well-being and this is worse than compared to patients with other types of cancer! I doubt anyone did a similar study about CLL spouses and caregivers, but I am willing to bet a fistful of dollars to a single krispy kreme glazed donut that caregivers get depressed too. I walk in your shoes.
“Magic Mushrooms”? Are you serious?
PC and I spent our grad school years in Ann Arbor Michigan. We watched, mouths gaping, as our new American friends experimented with all sorts of drugs and mind altering substances. We were too newly out of protective cocoon life in India and frankly too chicken to try anything more risky than beer. What goes around does seem to come around. There is a recent interesting press report about psilocybin, an extract of “holy mushrooms” and how it may be able to help depression in cancer patients. We are talking life altering and transcendental experiences under carefully controlled conditions of a clinical trial, at the venerable Johns Hopkins University Medical Center, no less. The study is published in Psychopharmacology, well regarded journal. Here are more layperson friendly excerpts from a WebMD article. Click the link to read all of it.
Magic Mushrooms Drug Shows Promise as Therapeutic Tool
Researchers Say Lower Doses Produced Lasting Benefits With Less Risk of a ‘Bad Trip’
By Brenda Goodman
June 16, 2011 — Psilocybin, a powerful psychoactive substance derived from magic mushrooms, can safely be used in a controlled setting to help people have positive and often life-altering experiences, a new study shows. The study is part of a renaissance of research into the benefits of hallucinogenic drugs that were first popularized, and villainized, in the counterculture movements of 1960s.
Ongoing clinical trials are testing agents like psilocybin to to ease anxiety and depression in people who are dying of cancer. The new study, from researchers at Johns Hopkins University School of Medicine in Baltimore, tested different dosing regimens of psilocybin in 18 healthy adult volunteers. After trying psilocybin just one time, many of the volunteers in that 2006 study reported having profound spiritual and mystical experiences that made them more open and honest, less judgmental, and closer to family and friends, and some rated it as the most personally meaningful experience of their lives.
But about one-third of those volunteers also experienced transient periods of overwhelming fear and anxiety. They felt afraid that they were trapped, for example, or that they were going to go insane. Most of the time, those feelings passed during the session, but in a few cases, they went on for hours. “That’s known to be one of the risks of recreational use of these compounds: People can have panic reactions, fearful reactions” says study researcher Roland Griffiths, PhD, professor of psychiatry and behavioral sciences and neuroscience at Hopkins.
In the new study, Griffiths and his team found that when the dose of psilocybin was reduced slightly, most people still had the transformative mystical experience, with far less fear and anxiety. Nearly 75% of the study volunteers reported having positive, highly beneficial experiences on the two highest psilocybin doses used in the study. Almost half rated taking the drug in a supportive, therapeutic setting as the single most meaningful experience of their lives.
For the study, Griffiths and his team recruited 18 physically and mentally healthy adults. Each study participant was given four doses of psilocybin, with a month between each dose. Doses were based on body size and were 5 mg, 10 mg, 20 mg, or 30 mg for every 154 pounds of body weight. A placebo dose was also given. Participants were randomly assigned to receive either gradually increasing doses or gradually decreasing doses, to test a hypothesis that it might be more effective to start with a high initial dose. Neither the study participants nor researchers knew what group the participants were in or what dose of the drug they were going to get when they showed up for their sessions.
“When you work with people that have emotional issues, they are going to have difficult experiences,” says Rick Doblin, PhD, director of the Multidisciplinary Association for Psychedelic Studies in Santa Cruz, Calf. “Those are emotions that we anticipate, and to a certain degree, people need to work through them.” Indeed, many people who went through so-called “bad trips” also reported that the feelings were eventually replaced by more positive thoughts during the same session, and none reported that the fear or anxiety they experienced caused any long-term harm.
In contrast, nearly three out of four people on the highest psilocybin doses rated their experiences as mystical, transformative, and highly beneficial. “The core of the mystical experience is a sense of the interconnectedness of all people and things,” says Griffiths. “That’s accompanied by a sense of sacredness, a sense of the experience being more real and more true than everyday waking consciousness.” Many reported that the drug facilitated lasting positive changes leading to better marriages, friendships, and family relationships. Many also reported taking better care of themselves and enjoying life more.
“If you really get this sense at the core of your soul, that we’re connected to a greater whole, and I think we all know this at some level … there’s something about that that’s very benevolent and uplifting and positive,” Griffiths says. Notably, the positive changes reported by participants have lasted more than 14 months after their last sessions.
Clinical trials using psilocybin (currently recruiting)
I located three trials that may be of interest to our members.
NCT 00957359 is being conducted at New York University. The title of the study is “Effects of Psilocybin on Anxiety and Psychosocial Distress in Advanced Cancer Patients”. Estimated enrollment is 32 patients and the study started in February 2009. Expected date of completion is January 2012. Refer to the NCT 00957359 citation for the study details, contact information and their inclusion criteria.
NCT 00465595 is being conducted at Johns Hopkins School of Medicine, Baltimore MD (Sidney Kimmel Comprehensive Cancer Center is one of the collaborators). The formal title of the study is “Psychopharmacology of Psilocybin in Cancer Patients”. Estimated enrollment of this study which started in April 2007 is 44 patients. Completion date is October 2011. Once again, please refer to the citation link for all additional details.
Not a cancer patient yourself but a spouse or caregiver struggling with your own demons? Here is a study that might fit your situation. (Frankly, I might be tempted to see if I am eligible to participate in this clinical trial myself).
NCT 100802282 is also being conducted at Johns Hopkins, Baltimore MD. The official title is “Effects of Psilocybin and Spiritual Practice on Persisting Changes in Attitudes and Behavior”. 75 healthy volunteers will be recruited in this clinical trial that started in August 2009 and expects to complete by April 2014. Click on the citation link for all the details.
Editorial
Our worlds have changed right from under our feet. It is not just in Western world of USA and affluent countries in Europe and elsewhere. When I go back to India to visit my Mom, I hardly recognize the country I grew up in for the first 21 years of my life. Extended families with many generations living under the same roof are now the rare exceptions, not the rule. Back then, if something was worrying me, I could sidle up to an aunt, grandmother, or some other adult who happened to be free and I could look for a nice cuddle, a little gentle scolding for worrying too much, emotional comfort to take away the angst and fear. Today, people are busy from dawn to late night, the rat race encompasses adults and children as well. Who has the time to deal with anything other than hurriedly putting out the latest fire? You don’t get double digit GDP growth every year by sitting around and contemplating your navel or examining the meaning of life! The good news I suppose is that we have options today that were not available then. We can turn on the computer or smart phone and send an email or “tweet” – hoping that someone out there will notice.
There are all kinds of resources out there, if one is interested. My GP is more than willing to prescribe Ativan to take the edge off of my restlessness and difficulty sleeping at night. If the depression is a bit more bothersome than that, how about one of the modern miracle anti-depressants? Dozens of them are advertised on TV, a case of direct-to-consumer marketing that I deplore. Not too thrilled with the idea of better living through chemicals? Don’t want to get hooked on yet another chemical crutch? My ever so busy daughter is quite willing to find me a good therapist, someone who will fix what ails my psyche by listening to me three times a week, for a modest charge – of course. Whatever happened to people who listened to you because they cared, not because they got paid to do so?
So many options and yet so little real help. Good friends or family who will spend time with you, grieve with you, shed a few tears and remember the people and times past – those are becoming harder and harder to find. Time is supposed to heal. But that is what most of us do not have, time to spare for others in the middle of the grieving process. I wonder how long Jewish people will continue the tradition of seven days of sitting shiva – before our attention deficit age decides to speed things up just a bit. Seven days!? Surely that is overkill, Dude!? Can’t we say au revoir to the dear departed in a more time-efficient modern manner? A hallmark card in lieu of sharing personal grief, money sent to a favorite charity in lieu of flowers or a personal visit? A psychiatrist and bottle of pills instead of good friends to listen to your pain?
Each of us have to find our own answers to these questions, in ways that make sense to us. For the spouses and caregivers, there are many extra dimensions of worry: who will take care of you when it is your turn? When the dreams of golden years yet to be shared with a much beloved spouse fade away into the sunset, the little kids you raised together now ‘live’ only in fading snapshots in precious scrap books and memories, how do you pivot smartly and start planning for the “Mean girls in Assisted Living“? Who will walk down memory lane with you, without surreptitiously glancing at their watches or rolling their eyes? Will there be enough money left over, after the last of the medical bills have been paid?
I do not know if the clinical trial I discussed above will provide any more answers, but they may be worth a try if you are looking for answers not found in prescription bottles or conventional counseling, religious or otherwise. But if you are inclined to try “magic mushrooms” on your own, please don’t. Be sensible and try them only in the context of a well protected clinical trial. I mean, it is bad enough we are all a little nuts with this CLL thing, but you don’t want to become really crazy, do you?
The other day I had my annual blood work done. I looked over the CBC report and it looked really strange to me. I am so used to seeing all kinds of asterisks, numbers and percentages out of whack – so much so that the neat rows of numbers with everything within normal bounds looked bizarre and unnatural. I do not have CLL. But it sure feels like I do.I know it will be the death of me someday, as surely as it killed my husband. Is that a psychosis? A psychiatrist may think so. After due deliberation, I decided on my own diagnosis. I choose to call it being a died-in-the-wool romantic. That is my final answer and I am sticking to it.
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29 comments on "Depression in cancer patients and their caregivers"
Wow this hit home! I have CLL with good prognosticating factors and this is suppose to make me soooo happy. I am suppose to do the happy dance with watchful waiting. I am tired and I am too dang young to feel like I am somedays feeling like I should be 80 and not just turning 47. Hardest is my husband is in Afghanistan so its just be and trying to be strong for my kids. I don’t get how I can be so tired and feel so achy and this is my new normal. Docs say don’t worry it won’t kill ya you have a better chance of having that happen with your clotting disorders than you do having this. So why do I fee so depressed?
Chaya,
If you hear of a clinical trial for “magic mushrooms” or any other mind altering substances, my teenagers and I would like the “family plan.”
As you said, CLL affects everybody in the family so everybody should be
treated.
Thanks for bringing up the subject and validating the emotional side effects of having CLL.
It worked for me!
2 years after CLL diagnosis I went through a severe depression caused, I believe, by extreme business stress combined with several ‘bad’ events – my diagnosis, death of a young relative, etc., etc. Nothing helped, including doctor prescribed anti-depressive medication.
After a year I took 2 LSD trips, 6 weeks apart, and after the second it was as if a switch had been thrown in my brain turning off the depression and switching my enthusiasm back on. It was like my thinking had been stuck in a particular rut and the hallucinogenic experience ‘jarred’ it out of that rut and re-set it in a different track. 60 months on I have had no bad effects and no depression recurrence – life is great.
I agree with the study’s “mystical, transformative and highly beneficial” comments.
Obviously taking these substances should not be done lightly – physical and psychological environments must be safe and reassuring. There is plenty of literature out there to let one know what to expect and I imagine someone with a fearful mindset would be vulnerable to the ‘bad trip’ experience (like a vivid bad dream.)
So, no recommendations to anyone, but that was my experience.
Thanks for this article Chaya. I’ve had depression for decades, long before being diagnosed with CLL. Living with someone with chronic depression isn’t easy – it has taken a toll on my immediate family and estranged us all from extended family and friends.
Since diagnosis I have watched my husband cope less with everyday stress. It is obvious me having CLL has reduced his quality of life. And I am not yet symptomatic or receiving treatment. It worries me how we will both cope when my health starts to go downhill.
Your story gives me hope that we can and will work through this difficult period in our lives and can grow in love for each other.
hugs
Beverley
Thanks Chaya
DX 2009, 13q unmutated w/cd38 positive on w/w. At the time my sister was being treated for ovarian cancer stage 3c and we were all really scared we would lose her. By the grace of God,she has been in remission 2yrs. I didn’t tell anyone right away. and then when I did all was concerned but they were told by unknowledgeable medical people and others there was nothing to be concerned about. I felt very alone, I talked little about it. If I did I felt like I was complaining. If I did say something. it wss my age or weight. a year later I needed TX for lymphopathy over load. I guess they began to see it wasn’t such a good cancer. The one thing I did was what you have said many times was to educate my self. I did this. It helped me tremendouly. Before I started tx, I went to my third council with a specialist and researcher. I believe through my own faith and prayers I have had a good out look. Sometimes I did it for others and that becomes very stressful. I also have learned that family want to help but they feel helpless because they can’t fix it. Others only want to hear you are doing OK. Sometimes I become over preoccupied. I am now in remission. What I would like to do is put it all on the back burner. For some reason, I feel like there is a hole left in me and I just keep walking around it. I don’t know how long this CR will be, I can’t do anything about it. I know I am not alone. I am not crazy. I have good days and I have not so good days. Thanks for all your valuable help
Midge
Exercise, especially vigorous exercise, may help relieve some forms of depression by helping release beneficial “runners high” brain chemicals. Exercise may also improve sleeping(a common problem for depressed people),weight management, muscular/bone/cardiovascular fitness, etc. It is also important to recognize the “visious circle” that (1) people who are depressed tend not to exercise and (2) people who do not exercise are more likely to be depressed. Regular exercise has many positive benefits with few side effects. Find a variety of exercise activities you enjoy and increase the intensity and duration slowly!
After successful vaccine therapy in Mexico set the clock back several years, I have been searching for a remedy to maintain the results of my therapy. I finally found just the right medicine. Laughter Yoga. Laughter is a proven stress reliever. It reduces depression and anxiety by increasing endorphins and serotonin. It strengthens the immune system, improves respiration and digestion. Dr. Kataria started laughter yoga in 1995 in Mumbai, India after researching the benefits of laughter and it has spread to at least 65 countries and thousands of laughter clubs. You get the same benefits from fake laughter as real laughter. You learn to laugh without jokes, humor or comedy. At the laughter clubs there are childlike exercises to help with laughter and deep breathing exercises in between. There is usually no charge to join a laugher club. Look for one in your area. I really believe the saying “laughter is the best medicine.”
Home run indeed Marzee. CLL, AIHA, PHN, etc. but my worry is for my care giver – she puts up a really great front but I can see it in her eyes. Worsening CBC’s, seeing me a little more out of breath, she takes in each little downward step and stores it up and it will eventually put her in a much worse situation than mine. Many thanks Chaya for your attention to this problem as well as your recent “treat the patient vs disease” article.
I find the information provided on this site invaluable. I was diagnosed 7 months ago at the age of 44 and was also told ‘I had a good cancer’. Since then I have read and researched all I can on CLL.I am on watch and wait, and just waiting for the mutation test results. I have found one of the hardest emotions to deal with is the guilt at worrying my husband and children, CLL feels a very lonely condition at times. But i try to stay positive even though its not always an easy thing to do.
Thank you for sharing your personal struggles Chaya. And to think we were the only ones riding that roller coaster of emotions called CLL.
After 3 remission failures and a treatment failure and now trying tx No. 5 I was diagnosed yesterday by my specialist with depression when I started to cry in his office! Was it because my WBC had only dropped from 75,000 to 68,000 and my HGB had risen from 112 to 115? Yes, they are moving in the right direction you will say. But I have asked myself who I am doing this for? and I’m not sure I’m doing it for me any more. If I stop treatment, the backlash will quickly come but if I continue I know there still will be no remission. How am I still mobilising myself? I don’t know. I am lucky that I have a professional to talk this through with, but it doesn’t really help much. Some years ago I read an article written by a doctor in England about the effect of remission failure and starting treatment again. If anyone has a copy of it I would be glad to read it again. I think there should be much more research in this area. I recently met someone in my hospital who had just failed her 2nd transplant for CML. How hard must that have been and just how do you tackle the mountain face? Message boards are helpful, but I wouldn’t generally post because of the Newbies. So if I don’t post, and perhaps there are more like me as well, we keep our ourselves to ourselves and the subject is not explored. Thankyou Chaya for bringing this up.
Chaya
Thank you for writing a very pertinent article. Ever since I was diagnosed, I have had depression. It is worse when I get sick, and it takes so long to recover. I worry about my caregiver and my children. I try to overcome my depression through exercise, deep breathing exercises, and laughter.
You are so special in telling us about how you feel. It is true that people are too busy, do not want to talk about “feelings”, so for you to open up gives all of us the knowledge that we are not alone in dealing with these issues.
My experience of 15 years in “cancerland” has shown me that one of the biggest problems is loss of peace of mind. When I was diagnosed with breast cancer, it hit me that of all the things that cancer patients lose, the biggest is that peace. Then when I would read these people saying that “cancer was the best thing that happened to me” I would want to smack them. That’s exactly why groups of people who have the same disease understand like NO ONE ELSE. No one can understand the mutilation to some degree BC patients have to live with. In CLL the dance is longer and different. The constant blood tests. The misunderstanding of the disease. I thought I explained “Watch and Live” concept to my children well. But I realized last week they still don’t get CLL. My body integrity has has so many hits from the BC surgery and aftermath, but CLL has hit it again.
I am convinced it is causing these joint problems which really affect quality of life. Luckily I am not genetically programmed for depression because having to care for my husband the last few years in his horrific decline was another factor dragging me down. THis was an important article and Thank you for writing this. Not only is depression a problem but the treatment. A certain class of anti depressants can stimulate cancer growth in solid tumor types. This is where natural medicine has really helped my quality of life. And this is why “coping” has always been my favorite word. It has been on my license plate long before “cancerland”‘ because it’s all we can do. Try to live in the moment, get all the joy out of one day we can, not blame ourselves for feeling bad at times with a diagnosis that leaves us without peace of mind, and finding the best coping mechanisms we can find. For me it has been support groups, a healthy life style, therapy, family and friends, and a belief in a higher power.
“The core of the mystical experience is a sense of the interconnectedness of all people and things.” Wow.
My husband was diagnosed in April 2011. This was right when the film by Tom Shadyac call “I Am” came out. It is a documentary about how a life- threatening accident changed his perspective on life. He explores the science of interconnectedness.
This film really helped my husband and I would recommend it to all of you.
Chaya, I find it interesting that you are positive about the magic mushroom depression cure. I thought you were dead set against any weird,’alternative’ therapies! My experiences of dabbling in these mind altering substances in my youth was they were truly unforgettable journeys but you always had to have a solid companion or ‘baby sitter’ to reassure you if you got spooked.
I think the CLL depression comes from being ‘incurable. It is really necessary in life to have something to look forward to. Often the best part of an experience is the anticipation and the memory after wards, but with this cancer there is nothing to look forward to, just the dread of having more chemo – that is apart from the hope towards a cure brought by Chaya of course!
A doctor friend reckons that at least half of any illness is defined and effected by our emotional state of mind, so I think we ignore this at our peril. The Indian writer(The God of Small Things)and activist Arundhati Roy wrote:
Patrol the borders of your happiness. Understand your sources of joy and protect them. It’s only when that happiness has gone, that you know what it was. Dream that you’ll live while you’re alive and die only when you’re dead.
So, I’m patrolling like mad!
molly fletcher:
I am neither positive nor negative about the potential use of “magic mushrooms”. I suppose I am agnostic at this point, in the “wait and see” camp. I would not touch this topic but for the clinical trials being conducted at credible research institutions. Please be sure to read and take note of this bit of my review above:
“I do not know if the clinical trial I discussed above will provide any more answers, but they may be worth a try if you are looking for answers not found in prescription bottles or conventional counseling, religious or otherwise. But if you are inclined to try “magic mushrooms” on your own, please don’t.”
Hit the nail on the head even more than usual there, Chaya. I am a CLL patient in a successful remission after FCR, and I have a wonderful partner who holds down a stressful job. Oh, and a son 35 who is in remission after a GBM Brain tumour. So I have seen depression in myself and others, and any experience is welcome.
My main concern is for my partner Melissa who is likely to be around after I’ve gone (not that I am planning going 1 second before absolutely necessary!) – your words about yourself and PC really struck home.
Hugs to you when you are down, and to everyone who has this cancer-related depression.
Lawrence
I was fortunate enough to start my communication with Johns Hopkins in September of 2008.
In 1969, I was diagnosed and treated at the University of Michigan for stage
III3 Hodgkin’s disease. As there was nothing to lose with this then not curable type of cancer, I was treated with experimental Cobalt that literally burned both the targeted areas of active disease internally, and my skin to the point od splitting open and bleeding. I was 19 at the time, and I remember thinking that I would probably live to be 30..based on the expressed caveat that it would probably return, and the then emerging approach of chemo would be the only option left to gain time.
There was no support system in place for peoples fear and emotions, both as a patient or caregivers, so you did the only thing you could, and tried to push back into life.
I am always fascinated by ability of our psyche to find a place on the shelf to stow these events while we get about the business of living.
As time passed, I began to celebrate my unlikely cure and dealt with the problems that resulted from such extreme levels of the Cobalt and the effects on my body systems..too many to list, but the predominate on being Aortic Valve replacement to do damage from the radiation.
But still, I started to joke about it being the gift that kept on giving
because I was survived something that was not curable at the time.
Then CLL came into my life. I do have three other members of my family that have been diagnosed with it as well, so it was not a result of the earlier treatment as many doctors thought. I was quite stoic at the time
because before final and sure diagnosis, they gave me a litany of possibilities. When it was CLL, I almost said “Yea! I have leukemia!”
when measured against the alternatives.
I believe now that I walked in a detached place, although the ever present lab results brought the reality back home, and over the space of a year, I found myself becoming more withdrawn and realized that I was fully in the grasp of fear. This was so pervasive, and consumed almost 3 tears of my life.
Because fear is an intangible thing, I felt as though I should be able to shake myself loose from its debilitating hold.
Considering myself a somewhat spiritual person, I began to feel personally
responsible for finding my way out of this labyrinth, and equally as responsible for not. Yanking on the boot straps didn’t work this time..I was way beyond being capable of such a thing.
The more I tried, the more I failed, so when the Hopkins study was brought to my attention, I knew in a flash that it was the answer.
After many weeks and months of phone interviews, the result of personal schedules etc., I was accepted and made the trips to Baltimore.
There was nothing that I wanted more than to find peace.
The people that run the study were amazing in their ability to guide you through the process, and to this day I find it impossible to describe
just what an amazing experience it was…no words can do justice and to attempt to do so diminishes it.
All that I can say is that is ineffable.
Life changing…just amazing..the single most important thing I have ever done in my life.
as a footnote, my counts have been going down incrementally since my psilocybin sessions at Hopkins….Mayo wants to know what I’m doing..
the other members of my family have/had different disease courses, but for today that is where I am at…dead set normal WBC…
Only speculation can carry on from here, but for me I left Baltimore a much lighter person, and in a place of presence and gratitude.
As before, I received a gift that just keeps on giving.
My labs could turn around and start climbing at any time, I get that, but the fear that dogged me for so long is gone.
It is absent…..no longer part of any equation.
It is what it is, and oddly enough, I see the perfection in that.
may you find peace on your journey
janeen
Rick, Janeen:
Thanks so much for sharing your personal journeys. We are all stronger when we help each other understand and make better informed decisions. I appreciate your candor. Depression and dealing with it are still taboo subjects in our culture. It takes courage to speak out.
May you continue to enjoy the peace you earned for yourself.
Hello Chaya, I must say, you are even more amasing than I thought. One of the things thrown at me was; it is not normal to be angry. At the same timr it was agreed, by various medics, that the knowledge of CLL was utterly needless. The doctor with whom I eventually ended up, agrees, there was no need or benefit to anyone, being diagnosed. Good cancer, my foot; since when was an incurable cancer ever good?
put it on the back-burner, it probably won’t shorten your natural life-span…how do “they” know. Submerge yourself in “groups” of other cancer-sufferers, do therapy, take pills; just do not ever again expect to have peace of mind, or feel at ease or feel you dare to just watch life happening, stand back and marvel…you might miss a bit if living and you don’t know how much you have left! I don’t know if anybody else have come across the know-all do-gooders (of the professional variety) who tell you that you must tell the whole world, that you have cancer; the ones that want to teach you how to tell your grand-children etc..The last thing I would wish, is to inflict that fear and grief on my nearest and dearest. And then there are the terrier-like medics who tell you they hae done you a service…so you can get your affairs in order…I do admire those who take it in their stride!
Chaya, you are brave, and valuable, and obviously caring, not a professional carer or someone who wants to tell a person how to live their life, long or short. I for one, value your factual decifering of jargon, and the articles obout treating the disease or the person. The same can be asked, are “they” diagnosing an “interesting” disease which happens to have a person involved, or do they diagnose a person with a disease, too often it appears that the person who has the disease and their carers and those who care about them, is completely left out of the equation. (excuse mis-spellings)
Be well and get happy, and thanks,
Mette
I am freshly diagnosed (4 mos) with CLL and already I grow weary of hearing how lucky I am. However I really like that my oncologist smiles and wears bright and cheerful shirts. He knows and I know that trouble lies ahead but we don’t need to be down all the time. So smile and put on a colorful shirt !
Chaya,
Chaya,
A very powerful article. I am at the age, 78 when it takes all my strength to keep the medical community in tow. Sometimes subtle sometimes not, re: medicare patients.
My Gyn doctor states older women do not need pap smears. Not even every two years. I state that is a decision made by the team and I am part of the team. I have too much cancer to put up with this.
This year I went to another doctor. She agrees with me.
My dearest friend since childhood who was so very healthy. No cancer!! died recently from two strokes.
I am usually upbeat, exercise and walking and keeping busy.
But those days creep in when I am down. I just ride the waves of Life and carry on. No medication for me. I am on enough. No mind altering meds. I have to be in control of myself.
Many Blessings,
Rita
I was diagnosed with CLL in February of 2006. My first oncologist was rather unconcerned and didn’t even order the common tests to confirm mutational status!! Luckily for me she left the practice and I now have a wonderful doctor who spends as much time as I need and orders the proper tests for me. When I was first diagnosed I felt as if I had an anvil over my head that could fall at any time. I went to a psycologist and she helped me reduce that anvil to a cloud. While she probably felt it was a white fluffy cloud to me it is a thundercloud. It could turn dangerous at any time. I try not to fixate on my CLL but it is always in the background. I am lucky not to have had any treatment so still watch and wait five years in. Sometimes I feel that my family does not understand the constant that CLL is. My husband is the type that says “We will deal with it when we have to.” Well I have to every day. Thank you for your informative articles, I look forward to learning from them.
I found the Maggie Centre here in Hammersmith, London UK really helped with the mental side of dealing with cancer and it’s treatments. The centres are within the hospital grounds, and are run by volunteers. Having had their chemo for cancer and their physical needs seen to, anyone who wants to, can drop in to Maggies after they come out from the hospital. The centres deal with the mental side of coping with cancer and I found it to be brilliant. They give a listening ear to the patient or their carer, as well as group meditation sessions, stress reduction exercises, yoga or just a cup of tea in an amazingly beautiful modern building. Why dont ALL hospitals have them? It certainly speeded up my recovery from chemo.
Please note that the two John Hopkins studies have an upper age limit of 70 years which eliminates many CLL patients and care-givers. The NYU trial has an upper limit of 76 years.
I hope the investigators have some valid reason for this criteria …
I was diagnosised in 2002 at 48yrs old, recently finished my first round of chemo treatments this month. Prior to treatment I voiced my concerns to my internist that I was felling depressed because of having to embark on treatment. She suggested that I try a script of Atavan (anti anexity) before trying antidepressents, it worked really well for me as I took it only when I needed it and I could increase the dose as needed. Just wanted to share in case it helps anyone.
Thanks very much, Chaya, for sharing your most intimate thoughts, feelings and caring. You have enriched each of us irrespective of our spiritual orientation. Being aware and honest with ourselves and how we value and esteem others helps us to be our best self.
Peace and love.
Exercise, especially vigorous exercise, may help relieve some forms of depression by helping release beneficial “runners high” brain chemicals. Exercise may also improve sleeping(a common problem for depressed people),weight management, muscular/bone/cardiovascular fitness, etc. It is also important to recognize the “visious circle” that (1) people who are depressed tend not to exercise and (2) people who do not exercise are more likely to be depressed. Regular exercise has many positive benefits with few side effects. Find a variety of exercise activities you enjoy and increase the intensity and duration slowly!
I would suggest looking into
The Depression Cure: The 6-Step Program to Beat Depression without Drugs by Stephen S. Ilardi (Jun 1, 2010). It suggests exercise as only one part. Well-researched–many people like it. I know Steve a little–he plays keyboard in my church, if that’s any recommendation. However, there’s also a lot to be said for psychotherapy. Having been depressed pretty much all my life, a few years back I found my way out.
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