I know a lot of you have been wondering what's been going on cancer-wise around here since I haven't talked about it in a while. In fact, it's been about a year since I've given you an update. For those of you who are newer readers, my husband was diagnosed with multiple myeloma 2.5 years ago, a type of leukemia and his is, unfortunately, a fairly aggressive one at that. You can read all the gory details in the back posts.
Multiple myeloma is fairly rare in young people (my husband was 37 when he was diagnosed) and is generally only found in the over 65 set. However, in the last few years, the incidence of multiple myeloma in younger people has been on the rise, particularly among fire fighters and, to some degree, the people that helped with rescue and cleanup from 9/11. What this may indicate is that environmental exposure to certain toxic chemicals, coupled with genetic susceptibility may be the culprit in this rise.
My husband is no firefighter but worked in biotechnology for many years, exposed to a number of pretty nasty chemicals, benzene being one of them. It is suspected that benzene exposure may be a trigger for this type of cancer. It would be easy to pin blame on that, but really, they just don't know. As we find out all manner of risks associated with toxins in the environment and, as exposure increases and builds up in our bodies, I don't doubt that we'll see an increase in cancers of the like never seen before.
Anyway, I don't want to relive all the early days of my husband's diagnosis that I chronicled on this blog because I don't like talking about it. It was an extremely difficult time. But the long and short of it is that in 2008 my husband had tandem stem cell transplants because chemotherapy wasn't working for him and, given how aggressive his cancer was, it was the best method of getting him even close to remission. Tandem stem cell transplants are not for the weak of heart because you are doing two stem cell transplants back-to-back. In his case, about 9 weeks apart.
That was almost a year and a half ago. Last week he went in for his week long long-term follow-up back at the Seattle Cancer Care Alliance. After running a multitude of tests on him, he's still showing low levels of cancer in his blood and bone marrow. This is not at all surprising (and we already knew this) because he is still on immunosuppressants while his body and the donor transplant get used to each other. They will be weaning him off of the immunosuppressants to maximize the graft versus leukemia effect. Essentially, letting the donor immune system wipe out the rest of the cancer. There may be negative effects of doing this - it's a balancing game as you don't want the graft to attack healthy skin and organs. But, you also don't want the cancer to have free reign either.
There are additional treatments that can be administered once he's off immunosuppressants. Some have the potential of pushing him into remission. However, they were very clear that there is no cure for myeloma and that they view it as a chronic disease to be managed. Unfortunately, the recurrence rate post-transplant at the five year mark is 60%. The odds aren't necessarily in our favor, but they never have been.
The fact that he's still around, able to work full-time, take classes and generally live a fairly decent life is beyond my expectations when we were initially told that life expectancy was only 2 - 3 years even with treatment. We are almost at that threshold and things are looking good for the short term. We just live each day hoping for the best, because that's really all we can do. It would be easy to get wrapped up in the negative side of things and that's not to say that we never do. But, one thing that it has done has been to change the way we live. We don't have the luxury of planning things for the future. So, we have to live for today.
I'm personally doing things that I never would have before, things that I would have been afraid of doing before. Not that I have lost that fear, but I'm more willing to push myself beyond my usual boundaries. Things like the television show, for example. I'm not exactly saying that I'm thanking cancer for that, but in some regards, I guess I am.
Even though things are stable for now, you never know when that could change. And the same thing could be said for anyone. All it takes is a medical issue, car accident or earthquake to completely turn your life as you know it upside down. So, my advice for you? Don't wait to realize your dreams. Because you might not have the time to do it.
Friday, January 15, 2010
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39 Crunchy Thoughts:
Your strength and attitude amaze me. Thank you for your frankness. I wish your husband (and the rest of your family) many happy, healthy days. And I hope I can a little of your "live each day" philosophy and add it to my own life.
An inspirational post, thank you for sharing...
That's a kick in the ass that I needed. :) I keep saying I should/will start an Etsy business or some other small, crafty business but it doesn't get done because I'm scared.
I can do it. I just have to do it.
I think I was just starting to read your blog when you got the diagnosis, so I mostly know Bad-ass-Crunchy-with-a-capital-C. It's fine to say that good stuff has come out of a bad situation. We all need those silver linings.
Cheers to you and yours. :)
Best wishes for your family during the next steps of treatment. I’ve been hoping that things were going well, since you have been quiet about it.
I can’t put all the parts together, but I have always felt that it’s what we’ve done (air emissions from manufacturing, bringing chemicals into our homes through wood treatment or cleaning chemicals, etc) that has brought about the increase of illnesses that we see now. We suffer through these, and have to spend (billions?) to find cures.
Ditto the above thanks for the "kick in the ass" to stop dreaming and start doing!
My uncle, when asked on retirement, what he was going to do replied that he hadn't figured out what he wanted to be yet. I sadly suspect that he never did.
Still, you can spend a lifetime of fun stuff just trying things out so its not all bad.
I've lived with a family cancer victim and its an emotional roller coaster. I'm crossing my fingers that you are part of that 40% for all your sakes.
viv in nz
from you: "So, my advice for you? Don't wait to realize your dreams. Because you might not have the time to do it."
Amen! Thank you for that. It's a message I always need to hear.
I'm glad to know things are stable and relatively good at this time. I also wish your husband (and your family) many more days and years...
Thank you for this post. As a student with several years of school still ahead of me, it's easy to focus on getting my doctorate, and think that that's when my life will begin, instead of focusing on every moment between now and then. I really don't want to let 7 years of my life pass by in a haze like that.
You and your family are in my prayers for health and defying the odds as your husband continues his treatments.
Thanks for the update, Crunch. Yes, I was wondering, and worrying a bit. Yeah, it's really HUGE that he's still up and running. Glad to know that.
Thanks for the update, b/c we have all been wondering. So glad that things are going this well. Too bad that good thoughts from people who care about you can't wipe it out, b/c he'd be cancer free in about a nanosecond! Very best to all of you, and thanks also for the kick in the pants.
I, too, had been wondering how things have been going; am glad the update is on the positive end of the spectrum and that your hubby is able to work and pursue things he wants to do.
Deanna, thanks for this post. Your strength, grit, and determination each day are absolutely inspiring. Thanks for sharing this with us.
Beautiful post. And although my situation was minor compared to yours, I agree that when you face something you're not expecting, your life changes in ways that are both painful and miraculous. Thanks for sharing.
I don't know anything about how it would interact with the treatments he's already doing/taking, but you may want to check out the New York Rescue Workers Detox Clinic. It's been around for a few years now, and it's healed many, many firefighters/police officers/nurses/port authority officers that were exposed to nasty chemicals and toxins on 9/11 of many, many, many symptoms and diseases. Civilians can get in, as well, but they have to pay, whereas rescue workers get in free. They have research posted online, and I visited their NY location for a firefighter training thing I shot a couple of years ago. It's an amazing detox program, and it's helped a lot of very, very sick people. The participants are overseen by doctors at all times, and it takes about 6 weeks. If you want more info, e-mail me at jane@globalshout.com or check out their website. You may read about ties to Scientology, but I've been there, and I am in no way affiliated with them, and it's just a medical outreach of the church - no pamphlets, no proselytizing. Just a really neat program that may be able to offer him some relief.
http://firechief.com/health-safety/ar/911-rescue-workers-detox-project-200906/
http://www.nydetox.org/
Thanks for the update! As I think I told you before, our local weather guy (who I've watched since I was a kid) is a multiple myeloma survivor... for many years now.
Anyway, I agree not to wait, our lives and our happiness are under our control.
Great advice. This is an evocative piece with a great message. May you and your husband continue to have many more wonderful experiences together...thanks for reminding us of the fragility of life and not to waste it.
I'm so glad things are stable for you. You and Hank are always in my prayers, FWIW.
Sharon
Your story is a wonderful illustration of the classic advice "... make lemonade", and you are certainly an inspiration to many of us out here.
We haven't had any personal illnesses or tragedies, but nevertheless, we've been taking the advice you give to live our dreams and stop putting off those things we really wish to pursue because of fear.
Thanks for continuing to be an inspiration ....
Crunchy, have you read this?
http://www.cnn.com/2010/WORLD/europe/01/14/uk.thalidomide.apology/index.html?hpt=Sbin
I debated whether or not to send this link to you, but in the end, I feel that we all need to be an advocate for ourselves regarding our health care and that knowledge is power. What caught my eye was the woman in the Comments section who mentioned thalildomide as a cure for myeloma. Regardless of whether this is useful info for you and your husband, I wish you both all the best.
Pirate - I totally agree with the commentor on that post. It is hugely lifesaving for myeloma patients and they are crazy careful with distribution of the drug. My husband wasn't on it, he was on something similar. But as with most chemotherapies like this, they don't take exposure to babies lightly - even as his spouse I had to answer a questionnaire every month before they would distribute it from the manufacturer.
Very inspirational post..thank you...i do believe i will get myself out from under all these cats and get off the couch now, and do something worthwhile....ps love your blog
thanks for letting us know how you and your husbank are doing. that's great he is doing so well, may he do so for many years to come.
peace to all,
Shamba
It's great to hear he is doing well. I was wondering as well.
I remember sitting at my grandmother's kitchen table one day many years ago, when she told me about her dreams as a young woman. She told me she had always wanted to be an architect, and that she wished she'd pursued it because it was what she truly loved to do. There was a deep, lasting regret in her voice as she said it. I remember her as always being an unhappy person in her life, and she remained unhappy until her death a couple of years later.
On that day at my grandmother's kitchen table, I vowed to myself that I would never end up so dissatisfied in my life, I would never end up in my 80s wishing I'd done what I really wanted to do. I believe she just never had the courage to follow her dreams.
It is unfortunate that we as humans need to have that jolt of painful reality that inspires us to pursue our dreams and to not take life for granted. But I am glad that many of us has found that motivation, and that you have shared it with others.
My stepdad had a different type of leukemia, but he worked for the phone company repairing telephone poles for many years. The job involved a variety of chemicals that have been tied to leukemia.
He lived for almost 10 years after his diagnosis, and for many of those years, we could forget he had ever been sick.
You are amazing Deanna and I hope your husband can beat this and be with you for a long time.
A personal and thoughtful post. I have nothing to compare or any experience taht would allow me to share... but then, cancer has touched so many of our lives, it's inspirational and moving to read your viewpoint. A reminder on what is important.
I send Light and Healing to you and your family.
I also watched Crunchy Chicken TV and am extremely impressed. It was fabulous and I am so glad that you're doing it!!
I had no idea this type of cancer was more common in firefighters- I know another woman whose husband has this (and is mostly doing okay) and he *was* a firefighter. Thanks for the info, and best wishes to your family.
My thoughts are with you and yours. Wish I had inspirational words of wisdom for you, but I don't, just compassion
I think about your husband and his battle with cancer often when I read your blog. I am glad to hear things are doing better but living with cancer is extremely scary. Your family will continue to be in my prayers and hopefully soon there will be a cure.
Thank you for your update. I truly hope your husband will go into remission. You both have a lot of courage. Your positive thinking and resilience set a wonderful example for others to emulate.
I've been interested in (and worried about) how environmental toxins may detrimentally effect our health for quite some time. It would be wonderful if we all got together to make inaccurate product defense illegal and demand long-term testing before chemicals were released into the environment, put into food or skin care products and make-up. Those companies that put profit over the health and safety of people and the environment should be culpable for the harm they've done. I've written a few posts about this and am providing links.
http://palmerspurview.blogspot.com/2009/10/children-and-our-poisoned-environment.html
http://palmerspurview.blogspot.com/2009/09/how-gmos-got-into-food-supply.html
http://palmerspurview.blogspot.com/2009/01/pbs-exposs-on-product-defense-and.html
http://palmerspurview.blogspot.com/2008/11/could-i-please-order-water-and-flame.html
xxx
Thanks for the update. I've wondered from time to time how your husband was doing. That he is able to work, go to school and live his life is so wonderful.
I completely related with your comment about how you are doing things you never thought you'd do or were afraid of doing before. My husband passed away from cancer a little more than a year and a half ago. In his case, it was stomach cancer that wasn't discovered until it had already spread. He didn't show any symptoms until 3 weeks before he died. My son was 12 and my daughter 4 at the time. Most of the time I don't have time to sit back and reflect on things, but when I do I am always amazed at some of the things I do now. I used to be a very nervous person and there were PLENTY of things I was afraid of. After going through what I went through, I'm not really afraid of much of anything anymore.
I'll be keeping you and your husband in my prayers.
What a wonderful post. It is true that adversity kicks us in the ass, but why wait?
My prays are with your family. If your husband is anything like you, he will give the C word an ass kicking.
The links between Cancer and specific diseases are usually hard to prove. But we shouldn't need specific data to take action against chemicals we know are dangerous. Thank you for raising some of these issues. Good luck to you and your husband in the days ahead.
Living for today is the best philosophy. You can't do anything about the past and have little control over the future. Sometimes it takes a major kick in the gut to get this idea in our heads. It sounds like you and your family are taking this major "kick" and living your lives for the best. Keep on being a good example for living green and healthy.
Linda Anderson
You are an amazing woman Deanna! Thanks for sharing your story. I hope and pray your husband will live a long and healthy life.
I am glad to hear that your husband is able to live his life, and I have all the best thoughts for him.
It is heart-breaking that your family has had to go through this. And even more heart-breaking that many other families may have to, as well, if we don't stop spewing out and using toxic chemicals at such alarming rates. What will it take for us to finally clean up our act?
I actually landed on your blog for the very first time right when you announced your husband's cancer. I admit I've been wondering how he's doing and you too for that matter. I am amazed at the treatments - wonder about the heroics and horrors of medicine and then I poke myself when I hear that you still have your husband with you and your family.
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