Two years ago this week I was diagnosed with Stage 3 nonsecretory multiple myeloma. Three years prior I had been dealing with rib and back pain, but that was diagnosed as arthritis. (Because I do not secrete M proteins, there was no sign from my regular blood tests that I had multiple myeloma.) But after x-rays showed six compression fractures, my new personal physician suspected something else was wrong and ordered a bone marrow aspiration. The oncologist did not suspect multiple myeloma – my age, no proteins – and was as surprised as I was when the lab report came back positive.
Anyhow, here are a few things I've learned along the way about surviving this disease.
1) You're not dead. In fact, you are just as much alive as everybody else on this planet who woke up this morning. I started telling myself this each and every morning. And because I am alive there is no excuse for me not to enjoy my life to the fullest. Related to that, there are a whole bunch of people on this planet whose life will unexpectedly end within the next 24 hours. Yesterday you might have gladly traded places with them. Well, guess what? Every single person will face death. The major difference is that you are aware of this while the majority of others aren't. This awareness can do one of two things. It can immobilize you or force you to enjoy every second of life you have.
2) When you are first diagnosed you will have all kinds of emotions. You may wonder where you will find the courage to fight this disease. You may not find that courage today, but eventually you will. Most of us do. Human beings are fighters and survivors by nature. Life is precious. You probably have already accomplished tremendous things against great odds. Maybe you earned a degree while being a single parent. Or you might have made it through difficult training in the military. Well, guess what? You are still that same person. You accomplished those things because of your character. And cancer has not robbed you of your strength of character. It can't. The disease is not that powerful. It may be able to kill you, but it cannot rob you of who you are.
3) To survive you need BOTH faith AND a reason to live. I am an ordained minister. It is my profession. The "book" answer I am supposed to give is that faith alone is sufficient. But I've learned this. My faith may be enough to keep me from fearing the reaper. But I also need passion and purpose if I am going to survive this. What is it that makes you happiest? Where do you draw your energy from? What is it you need to change in your life?
4) You will find happiness. Hard to believe that two years into my multiple myeloma journey I am the happiest I've ever been in my life. But it is true. Two years ago I never thought I'd say that.
5) It will never go back to the way it was before you got sick. You will never be that person again. Even if the best of all possible outcomes happens – you have a complete response and during your remission they come up with a once and for all cure for this disease – you will spend the rest of your life as someone who has survived multiple myeloma. You will never look at life the same way again. On one hand, that is a good thing. On the other hand, you have lost something. Embrace the gains and grieve the losses.
Forums
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Matt - Name: Matt Linden
- Who do you know with myeloma?: Myself
- When were you/they diagnosed?: April 2009
- Age at diagnosis: 44
Your post
Matt, really great post. I needed to hear something encouraging like this! But I have one question: Do you think there are possibilities to fight for us against myeloma? Should we fight for a cure? And what are the best methods? Or should we better hope, that doctors will fight for us? One point is, that you have to accept IT and live your new normal life as good as possible. The other is, that myeloma might eventually kill us. But for some blood cancers there they've fount a cure. Think of some types of leukemia. That's a difference, when you compare this fact to ordinary people. They don't know their enemy (car accident for example). We do. I do under 40 years. A fellow friend of mine with 35. And that makes a difference. But sometimes I'm not sure, how to fight at all? We are only playing marrionettes and the real battle is in the laboratories. Have you some ideas to this point? Do you think it is useful think at all about this? Peter
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Parker Peter
Re: I Survived 2 Years: What I've Learned
Peter, my advice to any newly diagnosed patient is this: wait a few weeks before you make any decisions regarding the course of your treatment. During that time learn what you can about the disease and the various treatment protocals. There are currently several approaches. Find the right approach for you. You may want a very aggressive approach and if that is the case Arkansas might be the place for you. On the other hand, you might want to be cautious and conservative, using as few drugs as possible. Then Dr. Berenson in LA may be the doctor for you. Do you have an identical twin or is one of your siblings and HLA match? You might consider an allogeneic transplant.
I think the fact that we have choices is empowering for patients. And each approach has produced longterm survivors.
That being said, the latest research shows that Velcade, Revlimid and Decadron has an almost one hundred percent response rate and a better than 75% complete response rate. An approach that uses this combination of meds early in treatment may produce the best outcomes.
How do you fight? Control the things we can control. Mainly our attitude towards life.
One thing I do suggest is keep current with the research and the various clinical trials. You might find a clinical trial that is appropriate for you. For example, there are clinical trials which will add a series of vaccines to a stem cell transplant. From what I've read, there is very little downside risk to having the vaccine if you have already made the decision to have the stem cell transplant. But the upside potential -- that the vaccine might offer a cure -- is unlimited. But the patient and caregiver are the ones who are responsible for keeping up with the various clinical trials. Your local hematologist/oncologist probably treats so many different conditions that they do not know what is available while the doctors at the cancer centers might only be familiar with the trials they are involved with.
I think the fact that we have choices is empowering for patients. And each approach has produced longterm survivors.
That being said, the latest research shows that Velcade, Revlimid and Decadron has an almost one hundred percent response rate and a better than 75% complete response rate. An approach that uses this combination of meds early in treatment may produce the best outcomes.
How do you fight? Control the things we can control. Mainly our attitude towards life.
One thing I do suggest is keep current with the research and the various clinical trials. You might find a clinical trial that is appropriate for you. For example, there are clinical trials which will add a series of vaccines to a stem cell transplant. From what I've read, there is very little downside risk to having the vaccine if you have already made the decision to have the stem cell transplant. But the upside potential -- that the vaccine might offer a cure -- is unlimited. But the patient and caregiver are the ones who are responsible for keeping up with the various clinical trials. Your local hematologist/oncologist probably treats so many different conditions that they do not know what is available while the doctors at the cancer centers might only be familiar with the trials they are involved with.
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Matt - Name: Matt Linden
- Who do you know with myeloma?: Myself
- When were you/they diagnosed?: April 2009
- Age at diagnosis: 44
Re: I Survived 2 Years: What I've Learned
Thank you for your post. After fighting the multiple myeloma battle for two years now, 2 autos, 1 allo and multiple chemotherapies I have not found remission. Yesterday I met for the first time with my new doctor in the myeloma dept., I am no longer a transplant patient. I asked him a very stupid question, how long? Will I live another 20 years with the clinical trials and such, he said no, you may have five years. I still had several appts. so as I stumbled about with this information tucked under my arms, a big but came into my mind, BUT what if one of these trials works? Then, even after all the clinical trials and such, you can't quit looking for more life, not ever. No one can predict the when.
You are so right about finding your passion again. I hope to do this soon. Right now I can't remember what made me happy before all this SCT business. I am not at home, I have been in Houston off and on for two years and most recently I have been here since December 28th. I hope to get the okay to go home at my 100 day mark which is April 28th. I need to be home and get out of this limbo mode and find life again, life outside of MD Anderson, doctor appts., infusions, lab work, the whole cancer mode.
Looking forward to finding life again and living each day fully.
You are so right about finding your passion again. I hope to do this soon. Right now I can't remember what made me happy before all this SCT business. I am not at home, I have been in Houston off and on for two years and most recently I have been here since December 28th. I hope to get the okay to go home at my 100 day mark which is April 28th. I need to be home and get out of this limbo mode and find life again, life outside of MD Anderson, doctor appts., infusions, lab work, the whole cancer mode.
Looking forward to finding life again and living each day fully.
Re: I Survived 2 Years: What I've Learned
Matt,
I loved your 'what I've learned' post. It was very uplifting and helped put things into perspective and not allow multiple myeloma to just take over our lives, to the point that we forget what things make us
passionate about life. Yes, inDEED, the rest of the folks are dying too...and we need to simply focus on enriching the present. Faith, as you noted, helps a lot with that enrichment but it is an individual's passionate pursuits that bring the will and the desire to enjoy what each day brings.
So insightful.
I loved it!
Thank you for taking the time to share all that personal and spirtual growth with us, so that it can accelerate us on our our journey to CHOOSE HAPPINESS!!
WhoooPEE!!!!
I loved your 'what I've learned' post. It was very uplifting and helped put things into perspective and not allow multiple myeloma to just take over our lives, to the point that we forget what things make us
passionate about life. Yes, inDEED, the rest of the folks are dying too...and we need to simply focus on enriching the present. Faith, as you noted, helps a lot with that enrichment but it is an individual's passionate pursuits that bring the will and the desire to enjoy what each day brings.
So insightful.
I loved it!
Thank you for taking the time to share all that personal and spirtual growth with us, so that it can accelerate us on our our journey to CHOOSE HAPPINESS!!
WhoooPEE!!!!
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suzierose - Name: suzierose
- When were you/they diagnosed?: 2 sept 2011
Re: I Survived 2 Years: What I've Learned
Wow, Trainer
What a trooper you are!!
Two autos AND an allo...that is truly a force of will and victorious spirit.
I had no clue that was even a possibility to get an allo subsequent to an auto. Thanks for opening up that perspective.
I presume that they harvested enough of your stems for the 2 autos and then the 3rd go round, you needed donor stem cells.
Trainer, I think God's angels are working feverishly in your behalf , opening doors, opportunities and clinical trials which will enable you to have another 20 years.
Whatever, your purpose and passion is here you have not completed the mission. God is keeping you here to make certain you do fulfill your passions. You must go forth and find what makes your spirit happy and live to the fullest...you are blessed. Choose Happiness.
One thing that keeps me focused sometimes is remembering..that we are not human beings put on earth having a spiritual experience...rather we are spiritual beings here on earth having a human experience.
Your human experience has enriched your spirit for you to now clearly see all the passion you have for life, what it holds, and what you are going to accomplish. Grab hold and don't let go!!
What a trooper you are!!
Two autos AND an allo...that is truly a force of will and victorious spirit.
I had no clue that was even a possibility to get an allo subsequent to an auto. Thanks for opening up that perspective.
I presume that they harvested enough of your stems for the 2 autos and then the 3rd go round, you needed donor stem cells.
Trainer, I think God's angels are working feverishly in your behalf , opening doors, opportunities and clinical trials which will enable you to have another 20 years.
Whatever, your purpose and passion is here you have not completed the mission. God is keeping you here to make certain you do fulfill your passions. You must go forth and find what makes your spirit happy and live to the fullest...you are blessed. Choose Happiness.
One thing that keeps me focused sometimes is remembering..that we are not human beings put on earth having a spiritual experience...rather we are spiritual beings here on earth having a human experience.
Your human experience has enriched your spirit for you to now clearly see all the passion you have for life, what it holds, and what you are going to accomplish. Grab hold and don't let go!!
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suzierose - Name: suzierose
- When were you/they diagnosed?: 2 sept 2011
Re: I Survived 2 Years: What I've Learned
That was a great post Matt. Thanks.
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blayz - Who do you know with myeloma?: Self
- When were you/they diagnosed?: November 2013
- Age at diagnosis: 45
Re: I Survived 2 Years: What I've Learned
I admire your strength and will. Best wishes for a long life!
Take care.
Take care.
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Hen
Re: I Survived 2 Years: What I've Learned
Matt,
Very well said. I believe that how people react to a myeloma diagnosis has a lot to do with their outlook on life and mental state of being before diagnosis. Stay strong and positive and enjoy the good health you have today.
Very well said. I believe that how people react to a myeloma diagnosis has a lot to do with their outlook on life and mental state of being before diagnosis. Stay strong and positive and enjoy the good health you have today.
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Eric Hofacket - Name: Eric H
- When were you/they diagnosed?: 01 April 2011
- Age at diagnosis: 44
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