It looks like things may be working out for me after all, both in terms of doctors and treatments. After enduring the perfect storm of departing doctors, booming disease, and insurance headaches described in recent posts, there may indeed be calm in the eye of the hurricane. One might even say that change can be good, even though the circumstances leading to it have been just about as bad as I could imagine.
But I have learned not to count my chickens until they're in the house bawking, so the fewer details I go into now the better. In about another month, if all goes as I hope, I may have some good news to report here. In the meantime, I'll just shut up and deal with pressing matters at hand. Thank you all for your love and support and advice.
Part of the CLL journey is luck. . . . Luck in terms of the disease, luck in terms of its responsiveness to treatment, but also luck with being there at the right time when the right person or thing comes along. You may be less lucky in one area than another, but what counts is, somehow, that you muddle on through and also create opportunities for luck.
Even in the darkest hour, do not stop trying, and do not be afraid to shoot for "yes" when only "no" seems possible. When your life is at stake, there are no excuses for not going "all in" to find opportunities, even if it seems you don't have a lot to go "all in" with. You've got yourself, and you've got your loved ones, and that is everything. If you don't think you're worth the fight, or that they're worth the fight, then you have bigger problems than CLL.
I'm in my ninth year of dealing with chronic lymphocytic leukemia. I've changed my mind about some things over time, but two things seem as true to me today as when I started: One, deal with your emotional baggage going in, or start working at it then and don't stop until you have reached a clear place where you can get your game on and fight most effectively. Two, never panic. Do not let fear dictate rash action, no matter how pressing the need for action may seem.
I'm going to add a third bit of advice now: Don't be afraid to put your eggs in more than one basket (I must have chicken on the brain today). Cast around, Look everywhere. Opportunity comes to those who seek it, and my guess is that success will ultimately come to those who are willing to give up everything (including time and money) for it.
And please keep in mind that you do need a good doctor, or good doctors, to help make things happen. You can only go so far alone, and there is a big difference between feeling that you are carrying your doctor, or that your doctor is carrying you.
12 comments:
I'm so glad I found your blog. I too have CLL at age 38 and I am a single mother. I was soo scared when I was 1st told I had this dreadful disease the first thing I thought about was my child. Who would raise her? Who would love her like I do? She is what makes me fight to stay alive. After 4 chemo treatments my doctor says I'm in a complete remission. For some reason I don't believe her and I haven't told anyone yet... I just want to say I enjoy your posts and I hope everything works out well for you. Keep writing!
Hi David thats good news, fingers crossed , hate to trouble you at this time but whated to ask your opinion , on watch and wait my local hematologist told me there no need to have any prognostic makers tests at this time ie zap 70 etc ,did not push her on this subject ,now in hindsight may be i should have been more pro active and told her i whated these doing .
STEW ..(student nurse..England uk
Go For It!
Keep Luck Alive!
I am 52 years old and I was diagnose in Sept. With stage 1 CLL and also on watch and wait mode. I have read so much on this and it seems that doctors have such differences on when to start treatment which leaves me always wondering if I should be taking action now.
Dave,
My fingers are crossed and I'll keep checking back, but I so agree with your theme this time - luck has much to do with it, but so does seeking out all opportunities, having persistence and somehow not letting the emotions run the show off the rails.
Best of luck!!!!
Heléne
Mandysmomma, I feel like an old veteran of CLL now, in my ninth year of fighting this thing. But I remember the scary early days all too well. What I can say is that with time comes perspective, and with time also comes progress in treatment. This is a fruitful era for CLL research; hopefully you have achieved a deep remission and will have a long, long time until relapse. By then, there will be even better treatments, more targeted, easier on the system. Odds are very good that you will have a long life to look forward to with your daughter. So don't despair. I say this not as a Pollyanna type, because I don't sugar-coat anything in this blog. I say it as someone who's been around the block and sees what huge strides are being made.
All my best to you,
David
Hi, Stew.
Being in the U.K. sounds like fun right now, even though it's February and I live in Arizona, where the weather is a whole lot better. This means I must need a vacation (or holiday, as you say over there).
I don't know enough about your situation to discuss it with any intelligence. As a rule, I think knowledge is power if you are ready to receive it. So as to prognostic tests, I'd say have them done if you want to know, avoid them if you'd like -- so long as your disease is indolent and there is no threat of treatment on the horizon.
Prognostic tests are a great addition to our CLL knowledge base; they offer us some guide as to what we might expect, and can help weigh the risks and rewards of a particular treatment or course of action (or course of inaction, aka the dreaded watch and wait).
But clinical symptoms are an equal part of the picture, at the very least, and really should be seen as trumping test results in most every case.
ZAP-70, of all the tests, is the one that has yet to gain the widest respect among hematologists, at least on this side of the pond. I wouldn't bend over backwards to get it, nor can it be seen as a stand-alone marker.
As far as being proactive goes: I'm sure a reasonable doctor in this day and age would not refuse to run a CLL prognostic panel. She may not think it is necessary, and that appears to be the case here, but it's ultimately your body and your life, and if knowledge would make things easier for you, then I see no harm in pushing a bit.
Cheers,
David
P.S. I could even go for some of that warm beer!
Joan,
I'm sorry to have to welcome you to the CLL club. One thing about it, though, is that you will have plenty of time to come up to speed on the disease, its treatments, the current state of research, and so on.
There is never a reason to panic. Developing an ability to remain calm in the face of the CLL storm is a very useful skill going forward. This disease is counter-intuitive. Usually, with cancer, you jump in and treat the cancer and hope for the best. With CLL, not treating actually can make a great deal of sense. Poke around the excellent resources on the net -- such as CLL Forum and the ACOR CLL List -- and you'll begin to get the hang of how we all deal with this rather idiosyncratic disease.
By all means, at the outset, see a CLL expert such as Dr. John Byrd at Ohio State. Nothing will put things in perspective for you faster than having someone with years of experience let you know where you stand in the continuum of things. Seeing an expert is one thing I didn't do until three years in, and in retrospect I should have done it much sooner.
All my best to you,
David
Helene,
You said it best: "not letting the emotions run the show off the rails."
This disease often demands that we find our Zen-like center, like it or not!
It's one of many tools we have to use -- and I think you're also right that persistence is another essential one.
Thanks to all who have come by to wish me luck, and to encourage my persistence.
Cheers,
David
I was stage IV when "my" CLL was discovered (I didn't know anything was wrong, or didn't want to admit it). That was fifteen years ago. They got me into remission and then I didn't go back to the doctor for three years. I decided I was going to live as if the disease would never return. But it did - stage IV again. More treatments. And another remission which has lasted twelve years and holding. The moral here is that I don't think the timing of when you start treatment is that critical. You can afford to be patient, perform your due diligence, don't feel rushed. This disease is not like a solid tumor where it's paramount to remove it before it metastasizes.
Denny
Denny,
I agree in general. The timing of when to start treatment is tricky, especially given the idiosyncratic nature of each patient's disease. Your disease at Stage 4 may be a lot less aggressive than someone else's. Just being at Stage 4 itself isn't necessarily grounds to panic.
IMHO,the safest and surest trigger for treatment follows clinical symptoms. If the disease is booming and getting out of control, it's time for action. In other words, if nodes are growing, white count is doubling in a month, and if B2M is high (which I find a useful measure in my case, as it always seems to confirm what is happening on the ground, so to speak.)
That's where I am right now: Holding things with pulsed steroids until I (fingers crossed) can get into a clinical trial that should be of pretty good benefit.
Best,
David
My mom has stage 4 cll. She was treated in 09 went 2 years stable and then this year was treated again cuz it flaired up. Now she is stable again. Just curious what treatments u had. Can email me at stephg_75638@yahoo.com.
thank you
stephanie
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