Here is the third and final installment of Nick van Dyk’s multiple myeloma story. He makes a number of important points which are relevant for any myeloma patient:
There are a few things from my experience, though, that I think can serve just about anybody facing this diagnosis. So if I can leave you with a few key learnings from my own situation, I’d summarize them as follows.
1. This is an individual disease. There are many subtypes, and everybody’s physiology is different depending on the disease. Just as everybody’s situation is different depending on how and when they are diagnosed, what stage of their life they are in, how healthy they may be, and ultimately whether they want to attempt to control the disease or kill it. There is a right answer for me, but the right answer for you may be different. Recognize that you are your own best advocate, and take ownership of your disease. Advice is great, but ultimately the choice is yours.
2. Learn everything you can. Now we’re all wired differently, and not everybody necessarily has my tolerance for data or my control issues that manifested in me wanting to know every last detail. But I urge you to learn as much as you can, about the disease, about your specific flavor of it, about the treatment alternatives, about the different treatment approaches, etc.
3. Once you’re educated, pick a doctor – who MUST specialize in Myeloma — and develop a personal relationship with him or her. Myeloma specialists are busy, and in demand. It’s also not unheard of for some to have healthy egos – and frankly, the accomplished ones deserve it. You want access to these doctors, and you want them to be emotionally invested in your well-being, to the extent possible. Some doctor’s personalities are challenging, and some are more receptive to the notion of developing a richer relationship with a patient than others. But I’ve become friends with my doctor. To take one example, my wife and I have been out to dinner with my doctor and his wife many times, and that effort to build a relationship with him assures that I have his focus and that he is urgently dedicated to the best possible outcome for me.
4. Once you’ve picked your doctor, TRUST your doctor. As I said, there’s no one right answer. But you’ll drive yourself crazy if you second-guess everything. Do your research up-front, make your decision, and stick with the program. This is easy to say and hard to do – I faltered, but I only did it once, and now I realize I was a little silly to do so.
5. Lastly, and most importantly, be patient, be persistent, and be positive. Treatment is lengthy and all the procedures, tests, blood work, lab visits and especially waiting around can be very, very trying at times. But at the same time, the only thing you can really do as a patient in terms of influencing outcome is to be resolutely positive. Don’t let anything get in the way of your focus on battling this disease. You are bringing all your energy to it. Waiting in a doctor’s office, or enduring yet another two-hour MRI with all that banging (I’ve done seven of these so far), is just something that you have to do. Again, you didn’t ask for this diagnosis, but you’ll get father if you just accept that your treatment is something you will simply do. Put your mind to it and don’t let the little demons of doubt get in the way. Do not yield to the disease. Your energy is critical to your well-being and as I said, it’s the most important thing you can bring to the fight. Get suited up – it’s time to get in the game with everything you’ve got.
So that’s it, really: learn as much as you can, take control of your disease, pick your team with care and make sure you are a person and not just a statistic to them, invest them with your trust and confidence, and be positive. Regardless of your treatment choice, these things will make a difference for the better in how you get through your diagnosis and therapy.
There is more hope than ever before for the newly diagnosed Myeloma patient. Huge strides have been made in the past five years, and new therapies continue to be developed. Being cured, it is said, really means growing old and dying of something else. That kind takes the “cool factor” out of it. But it’s the best outcome, nonetheless. And I hope that each of you find a way to reach it.
I would like to thank Nick once again for sharing his story with us! Interesting and inspiring to hear from such a “young warrior!”
Feel good and keep smiling! Pat