I was the caregiver to my daughter. She was diagnosed with Stage III multiple myeloma in January 2012. Her treatment involved a tandem stem cell transplant. Prior to diagnosis, she was healthy and took care of her physical body. It helped her make it through her difficult treatment regimen. Still, nothing prepares you for chemo and transplants and neutropenia. You learn by just getting through it. For me, getting my patient through neutropenia was the most difficult part of my job. Here are tips that got us both through it:
- Keep It Clean! Clorox wipes were my best friend. I constantly used them to wipe off surfaces, door handles, toilet handles, drawers… Anything that I thought my daughter might be touching. I wiped things down several times per day. (Don’t forget the TV remote control!)
- Cell Phone & Computer Cleanliness: I used those same Clorox wipes to clean my daughter’s cell phone and computer keyboard. I once read that there are more germs on a keyboard than on a toilet seat. Yikes.
- Grocery Shopping: Prior to neutropenia, my daughter and I went grocery shopping. Since she couldn’t eat fresh fruits and veggies, we got creative. We bought loads of fresh veggies, except we cleaned them thoroughly by soaking them in vinegar and water. During neutropenia, I steamed them for 30 minutes. I also put those veggies in soup, boiling them in the broth for 30 minutes or more. I took bananas, peeled them very carefully, put them in a saute pan with a little butter and cinnamon and we put them on top of pancakes. For dessert, I baked apples. Yes, she ate too many packaged pizzas and burritos but she also got in some good healthy foods, too.
- Organizing Appointments: Get a good calendar and keep it updated. I needed something I could see, write on, and make notes and changes. So my calendar on my phone was not sufficient. I went to the Dollar Store and picked up a Big Huge Calendar and we were able to keep all those appointments straight.
- Organizing Pills & Meds: This wasn’t easy but I made a table with each day of the week and divided it up by Morning, Mid Day, Eve, Night. I listed each med/vitamin in each slot. I put all the meds in a big brown bag so none of them got lost.
- Entertainment: During neutropenia, mental fatigue sets in. To help us pass the time, we rented lots of DVDs. Lost and Mad Men were our favorites. We made it through the entire series during our neutropenia days. We also stocked up on magazines and books. While my daughter was sleeping, I took walks in the neighborhood and discovered a lovely local grocery store nearby that I frequented.
- Take Care of Yourself: While my daughter was at clinic, I knew she was well taken care of. I used that time to take care of me. One day I went to get a pedicure. I just needed some “me” time. Take care of yourself, too—you’re an important part of this treatment!
- Your Patient Needs Slippers: Your patient should always have her feet covered. Germs love to enter the body any way they can. Socks are good, so are slippers. Make sure the feet are always covered.
- Swap Out Towels: I put out a fresh towel for my daughter after every bath or shower.
- New Toothbrush: I swapped out my daughter’s toothbrush every single day. Overkill? I don’t think so.
- Hand Sanitizer: I constantly sanitized my daughter’s hands throughout the day.
- Shower Daily: There may be days that your patient hardly wants to get out of bed. Well, drag them out if you must and get them in the shower. It is imperative that they stay as clean as possible,
- Masks: My daughter hated wearing a mask when we stepped out of our “clean apartment” but it was required. I reminded her and insisted that she wear it. She was a good sport about it.
- Change of Clothes: I made sure we had enough clothes to change daily, from pajamas to T-shirts to sweats—she wore it once and it went into the hamper.
- Keep Those Hands Out of Your Face (and ears, and mouth, and eyes…): Habits die hard but I constantly nagged my daughter to keep those hands clean and to keep them away from anywhere where germs might get into her body).
We made it through four rounds of neutropenia intact! It wasn’t easy but we did it. Planning helped (and so did a lot of prayers).
about the author
Myeloma survivor, patient advocate, wife, mom of 6. Believer that patients can help accelerate a cure by weighing in and participating in clinical research. Founder of HealthTree Foundation (formerly Myeloma Crowd).