Ride the Treatment Ride

RIDE THE TREATMENT RIDE

Once you have chosen your doctor and your treatment plan, your job is to just RIDE THE TREATMENT RIDE with the serenity that comes from knowing you made the best decisions possible for your case. Try to ride it with peace and joy. Have confidence it will be great in the end!

  1. Expect complexities. That way when they come you can be calm and remember that it is just part of the ride. 
    While my breast cancer diagnosis allowed for enough time to really research and prepare for treatment, my ALL Leukemia diagnosis, because it had to be treated immediately, felt more like being quickly pushed down a waterfall and then into wild water rapids.  There were unexpected curves, but the more I could just  “ride the ride” the calmer and happier I was.  When the curves come,  just remind yourself that it is just part of the ride.  
  2. Stay alert! Even the best doctors and nurses can make mistakes; they are only human!
  3. Take notes! Write down your questions and write the answers. Even if you are in the hospital, keep your legal pad with you and write your questions on the first page. Doctors making rounds can come very early when you are sleepy.    
  4. Be kind and connect with the people caring for you. The nurses are human beings who are hard-working and often under major stress.   Always introduce yourself, “Hi, I’m Bev.”  Try to comment on something,  “Love your name.” Ask about their lives and families. I loved asking the ones from other countries about their favorite dishes from their homeland. A warm connection helps everyone.
  5. Play the “I’m So Lucky” game as often as you can-  preferably multiple times a day. Feeling lucky makes you feel grateful, in spite of the difficult swirl around you right now.  It makes it easier to have a positive attitude, hope, and the energy you need to focus on getting yourself better.  I felt so lucky my kids were older when I was diagnosed.  I felt so lucky that the Covid years made my husband’s clients used to interacting with him virtually and made it much easier for him to be with me in Houston during my months of leukemia treatment.  I even felt lucky when I switched direction on my walking loop of my hospital floor and noticed a beautiful photograph on the wall I hadn’t noticed before.  How lucky I was to be able to finally see that art and enjoy it!  I also heard of a terrible tragedy the week I was diagnosed – the tragic death in an auto accident of a young mom. What I was going through seemed far less difficult than what that poor family would experience forever.  It put my situation in perspective. If you look for where you are lucky, you will find it!
  6. Try to laugh at the inconveniences – it can help a lot!  After weeks of being attached 24 hours a day to an IV pole, I really started to resent the pole. I knew the negativity I was feeling wasn’t helpful or healthy and needed a new relationship with that darn pole!   So I named it: “Paul the Pole.”  Once I did that, I giggled when I had to pull Paul into the bathroom or down the hall, etc.  That silly name helped me so much!  It gave the nurses a chance to laugh, too.

TIPS FOR PATIENTS FROM BEV, A FELLOW PATIENT​

Sharing some things I found valuable during my long hospital stays:

  1. Wear your own PJs, not the hospital gown.  You will feel more like yourself and I felt it comforting.   Best if the PJs have buttons.
  2. Bring your own pillow from home.  I really appreciated that I happened to have a satin pillowcase.  I always use them because I normally have curly hair (when I have hair :). You may find as I did that the drugs you are given cause your skin to feel extra sensitive.   I really appreciated the softness of the satin against my cheeks. Plus hair slides off it so you don’t have to put your face in your chemo hair loss when it happens.
  3. Sturdy slippers, with nonskid bottoms, are something I was grateful to have.  The drugs can make you feel extra wobbly.   Of course, you will ask a nurse for help, but when you are up to walking on your own, that stability and nonskid nature of the soles really do help you walk more steadily.  A happy bright color is a plus, and it will help you find them when the hospital staff accidentally pushes them under your bed.
  4. Bring a very soft throw blanket to put on top of your bed.   This will make you feel cozy and much more at home.   And it is important to sit on something very soft when your skin is sensitive,.
  5. I brought a tiny fridge (Frigidaire, from Target).   It was wonderful to be able to store the spinach banana smoothie my dad would make me and I could sip before room service brought my breakfast.  Plus I felt so healthy having something easy to digest during chemo that contained spinach and bananas (potassium can go out of whack during chemo) and unsweetened soy milk and a sprinkle of cinnamon. All healthy things which made me feel like I was helping to heal myself.
  6. Keep moisturizing everything:  your body, your hands, your eyes if they get dry.  For me, everything got dry and I so appreciated that my daughter brought me some extra-moisturizing products she researched.   The best one was a yellow body cream made by Kiehls.  The nurses couldn’t believe how lovely my skin was in spite of the chemo and drugs drying it out.  My daughter also brought me a Kiehls hand cream that turned my sandpaper hands soft and comfortable. These are nice things for friends or family to give you when they hear you are in the hospital.
  7. Poop – let’s talk about it because it is SUCH an issue for most patients.   The pain killers and chemo drugs we patients take often make us very constipated, even if you are never constipated at home. The antibiotics you may be given can cause diarrhea.   Be proactive on this.  I even consulted with MD Anderson’s Gastroenterology department during my stay and I was glad I did and know that you can too.    They recommended I take Metamucil every day during treatment.  My recommendation is that The DAY you don’t poop speak up.  

Personal Chemo Tips from Bev (Please check with your Doctor first):

  • You don’t have to lose your hair if you are having chemo!  I did cold capping when I had my breast cancer chemo, and it was the best thing I could do emotionally.  I used Penguin cold caps , but there are others now too, including ones that nurses set up for you. For the manual ones, you will need a friend or two (or in my case, we had a whole party each chemo round) to put them on and take them off you during chemo.  
  • Ask for Ativan during your pre-chemo meds to help you feel relaxed.
  • Ice fingernails and toenails during the chemo drug infusion to prevent them from going black (happens with some chemo drugs).
  • Suck on ice or popsicles to protect taste buds.
  • Get a shower stool for when you feel weak (if you don’t already have a bench. It’s hard to stand around day-3 after chemo).
  • Some health centers offer massage and acupuncture. My Houston oncologist told me not to do acupuncture, but many oncologists are ok with it.
  • The steroids help you to feel mostly ok at first, but then the wooziness will just hit you!
  • 3rd day after chemo is hard- plan for it. You will likely be in bed sleeping much of this day, possibly watching TV. 
  • Xanax had been prescribed to help me sleep on my back after my surgery. I retook it the night before chemo and the first days after chemo as it helped with the chemo steroid-induced jumpiness that I felt.  
  • It can be hard to drive during the days after chemo – plan on taking Lyft/Uber or getting a friend to drive you.
  • The anti-nausea meds can make you feel dizzy. How productive you are on your feet may depend on how many days you need those meds. I needed them for a good week to week to 12 days after each chemo round because I am susceptible to nausea. Many people only need them for a few days.
  • For queasiness it is nice to have Immodium/Pepcid on hand, but I didn’t need it.
  • For constipation (common in first days after chemo): Ducolax & Miralax, Slow Move hot tea (sip this during your chemo infusion), Milk of Magnesia.
  • Claritin: start taking the day before chemo and four days total to make pain from the Neulasta shots go away. The nurse recommended I just take it daily throughout chemo.
  • B6: take every day to help guard against nerve pain.
  • Biotene mouthwash and Oracoat tabs.
  • Vaseline for your lips.
  • Artificial tears for dry eyes.
  • BRAT diet on hand at home in case you feel queasy (bananas, rice, applesauce, toast).


Integrative Health

    1. Integrative health: there is scientific evidence-based research showing that alternative strategies like Acupuncture and hypnosis can help.
    2. Acupuncture can lessen pain and improve difficult side effects.  So much so that most cancer centers employ an Acupuncture specialist.  
    3. Hypnosis can lessen pain.  A Stanford doctor has even created an app (Reveri on the App Store) so you can try to self-hypnotize and derive the benefits no matter where you are.  
    4. Cannabis – Medical cannabis had been scientifically shown to improve side effects of treatment.  Don’t just go to the CBD store, though.  First, ask your doctor.