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Multiple Myeloma an incurable disease, but I have spent the last 25 years in remission using a blend of conventional oncology and evidence-based nutrition, supplementation, and lifestyle therapies from peer-reviewed studies that your oncologist probably hasn't told you about.
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How should myeloma patients handle physical changes?
How should myeloma patients handle physical changes to ourselves? When I read HALEY GROCE‘s article linked below I was surprised by how well she understood the challenges. I had forgotten how long it had been since, for instance, I lost all my hair to induction therapy or had to get used to several new scars after my first surgery.
I will list Dr. Groce’s five most helpful examples:
- Hair loss. Baldness runs in my family so I had little problem when my hair fell out. But many cancer patients have a difficult time with alopecia. I recommend getting a wig.
- Weight gain. I gained 50 lbs. during the six months on dexamethasone. Many MM patients gain weight on dex. I don’t think there is much we can do during during dex. therapy. But the weight gain sure gave me incentive to exercise after my autologous stem cell transplant.
- Scars. It took me a year or two to lean in to my appearance with my scars. Once I figured out that many people were curious about how, when, why, etc. I learned to explain things.
- Cane, walking poles, AFO’s, walker. As my lower body has weakened (nerve damage), I have turned to people who have already experienced my same issues. I have learned a great deal of helpful “inside” information from fellow survivors on social media.
- Develop a short story and a long story. Essentially learn how to talk about your change- scar, handicap, weight, etc. The first few times family or friends asked me about a change, I fumbled around not knowing what to say. I learned that many people are curious about a change and want to know. Developing a story, short or long, helped me communicate the issue.
Coping with physical changes, coping with pain, coping with side effects- In my experience, cancer is all about learning coping mechanisms-
Dr. Groce doesn’t mention this but I found dark humor aka joking about my issues helped me deal with most everything. I grew up with my dad telling bald jokes (his own baldness) so that may have helped me. My wife called me Powder when I lost all my hair. My son and my wife both joke about how I startle easily (PTSD).
Email me at David.PeopleBeatingCancer@gmail.com with questions about your own MM challenges.
Hang in there,
David Emerson
- MM Survivor
- MM Cancer Coach
- Director PeopleBeatingCancer
How to deal with changes in your appearance due to cancer treatment
- Get to know your ‘new’ self gently and gradually.
- Find supportive products that make you feel confident.
- Develop a ‘short story’ and a ‘long story’ to answer any questions.
Cancer treatments have the potential to cause sudden, significant changes in your appearance.
Whether it’s a scar due to surgery, baldness due to chemotherapy, or skin conditions due to immunotherapy, these changes may be either temporary or permanent. They can also severely shake your self-confidence. And that, in turn, can make you feel uncomfortable or less inclined to be around other people.
So, how do you deal with issues like significant weight loss (or gain), hair loss, amputations, and surgical scars? Read on, for some practical suggestions.
Get to know your ‘new’ self gently and gradually
One of the biggest hurdles my patients face is coming to grips with how their bodies look now — as opposed to how they looked before their cancer diagnosis.
We help these patients by gently introducing them to their “new” bodies, and then gradually increasing their exposure to the changes. Normally, that starts with a verbal description. For instance, we might ask if we can tell them how big the bandage is or what the scar looks like. The next day, we might show them a picture of the scar. The last step involves the patient looking into a mirror, so they can see their physical changes first-hand.
We recommend a similar approach when you have children who might be afraid to come visit you in the hospital. In those situations, we encourage parents to:
- Start with a phone call: That way, they can hear your voice and know you’re still you. You might look a little different, but you’re still the same person.
- The second day: Send a picture of the bandage over the incision, then tell them what happened to cause it.
- The third day: Send a picture of the scar itself.
- The fourth day: Visit with them by video, so you can describe what’s changed and they can see it for themselves.
Early exposure tends to decrease everyone’s anxiety, so we usually start that process as quickly as possible — typically the day after an operation.
Find supportive products that make you feel confident
Between wigs, prostheses, and special clothing — such as mastectomy swimsuits — there are hundreds of products on the market designed to help people feel more confident about their appearance.
Our patients often learn about them through support groups, including virtual groups. Many of these groups are specific to one particular patient population, such as breast cancer survivors who have had mastectomies. So, ask your care team if any of the ones available are right for you. You might be able to pick up some great tips from people who’ve been where you are now.
Also, keep in mind that many of these items — such as wigs and prosthetics — are covered by insurance. So, we can write you a prescription for them.