My mother was fond of an quote from Benjamin Franklin's Poor Richard's Almanac, that went like this: "G-d helps them that help themselves." In over 20 years of fighting my personal battle with multiple myeloma, I have found this sentiment to be very true and very important.
When thinking about dinner, we often opt for a restaurant because it's so much easier to sit down and be served than to slave over a hot stove and wash the dishes. But, living long and living well with multiple myeloma often requires a good deal of "home cooking".
This does not mean that you need to be your own doctor. Even for someone who is a doctor themselves, that would be a dangerous sport. But, the reality is that even the most expert and most dedicated and compassionate doctors are only human. And, they are taking care of hundreds and sometimes thousands of patients in the course of a year. So, they do not have the time to focus on you in the same way that you and your family can. And, with some hard work, you can learn enough to be a strong partner with your doctor in managing your myeloma.
Knowledge is power. You need to know about your personal situation and you need to know about myeloma. Keeping on top of your personal situation means getting copies of the reports about your tests (e.g., blood work, x-rays, MRIs, biopsies.) and taking the time to read them and ask questions so that you can better understand them. You can check out a video of a presentation I made at an IMF Patient and Family Seminar explaining the basics. You can also refer to a wealth of free publications, available online or that you can have mailed to you by the IMF.
When making treatment decisions, myeloma is not like appendicitis or strep throat. It's more like the yellow brick road. There is often more than one right answer. There are so many new treatments and research findings that there isn't enough data to show that one treatment program is better than another. And, there are often serious symptoms and side effects, like hypercalcemia (high calcium in the blood) and deep vein thrombosis (blood clots) that need quick attention to avoid serious damage. An informed patient and/or caregiver can make all the difference.
Feel free to call the IMF Hotline if you have questions. You can reach out to over 1700 fellow patients and caregivers on our listserv, an email discussion group hosted by ACOR. And, you can meet hundreds of fellow caregivers and patients as well as world-class myeloma experts and IMF staff at our Patient and Family Seminars. You can also make connections and learn a lot in a support group. You can find a support group by consulting the IMF's worldwide directory of in-person groups.
Most importantly, remember that once you get on top of these things, managing myeloma doesn't need to be and shouldn't be a full-time job. You've got a lot of living to do!