Reviewed by Neha Pathak on May 01, 2019
Johnny Veselka<br>Queens’ Suite Productions.
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Johnny Veselka shares his experience with chemotherapy and a stem cell transplant. How did it impact his life, and how did his positive attitude help?
I work full time, so managing fatigue is something I'm always focused on. Regular exercise is the key for me. I walk at least several days a week, go to a tai chi class twice a week, and do water aerobics on Saturdays with other cancer survivors. It not only helps fight fatigue, but it's also a great de-stresser.
I get monthly massage therapy to keep me feeling good. I've established a great relationship with my massage therapist, who's been with me for 6 years of the journey. She really knows my body and is good at working out the kinks and adjusting when pain has me over-accommodating on one side or another.
What I've learned is while you can't control what randomly happens in life, you can control how you respond. After treatment, I got involved in patient advocacy and started a foundation to support myeloma patients and research. The journey to be actively involved in helping others was my emotional therapy.
I try to eat healthy. I start my day with organic oatmeal topped with walnuts, green tea, and a green smoothie with protein powder. I've learned my body needs a large green salad to counteract the constipation from my trial drugs. I generally stick with seafood, poultry, or beans for protein. I also drink tons of water.
Get involved with the Multiple Myeloma Research Foundation to be around other active and positive people with MM. Do yoga and meditation. Find something to be passionate about. Explore your creative side. I took up photography. Attitude is everything. Stay positive –– new treatments are being discovered yearly.
Don't feel guilty because you cannot do as much as you used to. Ask for help with things that leave you a bit exhausted. My friends did small things like let me out of the car right in front of the door. Support groups are important. Sharing your experience with others with the same disease is so helpful.
With good nutrition, whatever exercise you can manage, and an active social life, you can still lead a happy, productive life. I'm not saying it's easy because it's not. Quitting sugar, eating green, taking naps, getting massages, trying to lead a stress-free life, and keeping busy is exhausting. But it works.
The first thing is to get a second opinion. This is, to me, the most important thing to do. Your doctor may only treat three or four myeloma patients a year. You want to go to a doctor who sees at least 50 myeloma patients a year or is part of a practice that sees 100 myeloma patients a year.
To help with fatigue, I've always received my treatments on Friday afternoon. This allows me to go home straight after. I then have the weekend to rest and recuperate. Typically, the second day after treatment has me feeling the worst. I try to make time for extra rest and a nap in the afternoon on Sunday.
One of the most important things that I learned when I was diagnosed with myeloma is not to shut out the world or go quiet. Tell people what happened. It isn't some sort of thing that you should view as a weakness or a mark of shame. You need to get comfort and information. Isolation will only breed fear.
Infection can not only put you in the hospital, but prevent you from continuing treatment. Keeping well while being around children all the time can be tricky. It's important to wear a mask regularly if you must be in a crowd. If you can, enjoy vacations and high-traffic places while your numbers are good!
Help others with multiple myeloma find inspiration and guidance.
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