The most common side effects I had from my first chemotherapy treatment for cancer of Diffuse Large B-Cell Lymphoma (DLBCL) Primary non-Hodgkin of Liver, stage IV (because of Hepatitis C that I got from the blood transfusion result of the car accident in 2001) were fatigue, taste bud changes, dry mouth, weird mouth taste and smell, weakness, nerve pain in my fingers and toes, pain over the kidneys, stomach and digestive system areas, sleep disruption, frequent urination (especially in the middle of night), etc. I was also informed that nausea, vomiting, loss of appetite, and constipation happen to many people.
Because my mouth was very dry and tasted and smelled abnormal, and my taste buds changed, there was definitely discomfort in my stomach and digestive system. But I think eating macrobiotic foods has been helping me so much, I did not experience nausea, vomiting, or loss of appetite. I have to be creative with Eric to come up with what tastes good to me, because of the metallic taste in my mouth. I still enjoy most of my food and have a good appetite without nausea and vomiting. When I am able, I will put together what I have been eating to share with you.
Today, I want to write about emotional side effects I have experienced while receiving my second chemotherapy. There are many, including mood swings, depression and anxiety, but my doctor does not mention these much, so I thought it very important for everyone to know if you are receiving or will receive chemotherapy. Also, it’s good for family and friends to know, so they can support their loved ones who are going through chemotherapy.
Before I write what emotional issues I had, I want to quickly write what kind of chemotherapy I have been receiving. It is called EPOCH + Rituximab chemotherapy and contains: Etoposide (Toposar®, VePesid®, Etopophos®), Prednisone (Deltasone, Liquid Pred, Meticorten, Orasone), Vincristine (Oncovin ®, Vincasar Pfs, Vincristine Sulfate, LCR, VCR), Cyclophosphamide (Cytoxan®, Neosar®), Doxorubicin (Adriamycin ®, Rubex) and Rituximab.
This is a five-day, 24-hour chemotherapy, so it is an intense treatment. But it is a slower drip each day into my body than just a one-day, big-dose treatment, which could be too much for my system.
When I received the chemotherapy, I found out there were some other drugs that were also given with the treatment. Benadryl was one of the drugs given to treat allergic reactions; it is slightly effective against the nausea and vomiting that can be caused by chemotherapy. It made me feel scared, because I felt my heart go fast. At the same time, I could not move or talk, and I felt drowsy. It was only one time in the beginning of my first day of chemotherapy, but I really feel scared to receive this drug, so I wished I did not have to take it.
The second drug was a steroid, which helped reduce allergic reactions to certain drugs. Every time I receive steroids, I feel angry, frustrated, and moody, and I have a hard time feeling grateful and happy. This made me feel bad, so I talked to my friend Jessica. She said, “Sanae, that is not you; it is the steroid. So, you do not have to feel so bad. It will go away once the drug is out of your system.” She was right; it did go away after five days of steroids with chemotherapy. I was happy and feeling grateful again slowly, even though I know that I have cancer and am taking chemotherapy.
Neulasta has been giving me so much pain and emotional downsides. It helps bring up my white blood cells, but the side effect of bone pain all over my head, face and body was seriously unbearable to me. This is after the five-day chemotherapy I had to receive. The first time, I was not aware, and it put me down at least seven days and took another few days for me to really recover. I was crying a lot because of severe pain, and I was not able to do much besides just lying down.
The Tylenol that was recommended by the doctor did not help at all. Later, it was recommended that I take Claritin for pain, but it caused dizziness and drowsiness, and I was not able to function at all, even though the pain was a little better. So, I am not sure what to do for next time, and that gives me anxiety.
With the second round chemotherapy, I noticed many more emotional side effects than the first one.
I was feeling down and even had nightmares two nights in a row. My first nightmare was that I was not able to get better. I was walking and did not know what to do. I noticed that everything I touched caught fire, and I did not understand why it was happening. I put out all the fires, but I was getting so tired. I realized I was holding a small object in my hand; it had a small hole, and fire was coming out of it. No matter how much I blew on it, the fire would come back and burn everything I touched or got close to. I tried to release the object, but it was glued to my hand. I screamed and woke up.
The second nightmare was the same. I was walking again with this object in my hand, and things got burned when I touched or got close to them. I put out the fire as much as I could, but I was tired. No matter how much I made efforts, the fire of this object was in my hand. Again, I screamed and woke up.
I think having nightmares takes so much strength, and I am usually very tired when I get up. I also do not want to remember much, but this time, I really wanted to focus. It took time, but I realized the fire was the chemotherapy inside me, which I can’t get rid of. As I posted on “My First Chemotherapy,” the EPOCH chemotherapy liquid is orange colored, which looks like fire. It had very dark and heavy energy, so when I received it, I felt dark and heavy.
I am feeling:
- Difficulty concentrating and remembering
- Changeable emotions (sudden crying or anger)
- Loss of interest in activities, social events, and socializing
- Changes in sleep—mostly getting up early in the morning, around 4–5am
- Changes in appetite (my case not much, but I heard that it can be overeating or loss of appetite)
- Loss of energy and motivation
- Feelings of hopelessness or worthlessness
- A feeling that life is not worth living, suicidal thoughts (my case almost nothing this kind of thoughts this time)
- Increasing interest in sweet food and salty food
- Upset stomach or other physical symptoms
- Panic attacks
- Frustration with Eric and other people
In order for me to handle chemotherapy, I created a daily routine to help emotional side effects:
- Rest and sleep: It is very important for me to rest and sleep so I feel more refreshed and energized.
- Positive affirmation: I tell myself I am beautiful and doing well every morning.
- Daily food journal: I record a daily menu of what I eat and drink—what did or did not taste good.
- Creating a healing space: I use the bedroom or a peaceful resting/meditation space with green plants, flowers, healing gemstones, and cards/quotes that imspired me. Also add aroma therapy and Bach flower remedy room diffuser etc. (I made my bedroom window as my healing space with green plant, flowers and MaiMai was enjoying being there as the featured photo here)
- Finding something to enjoy: I love gardening, knitting, taking photographs, writing, making healing gemstones jewlery, calligraphy, and playing ukulele, but I can’t do many things beacuse of one of side effects from chemotherapy – pain in my fingers and toes, but I make effects to do gardening, knitting and taking photos when my fingers are less pain.
- Detailed daily planner: I note appointments and schedules, to-do lists, important dates, websites, phone numbers and addresses, meeting notes, and even movies I’d like to see or books I’d like to read.
- Body scrub: This activates circulation and better energy flow throughout the entire body. It helps to discharge chemotherapy chemicals, smells and toxins.
- Light exercise and moving my body: I do restorative yoga, stretching, and walking (short distance) with my dog(s). Regular physical activity is not only good for my body, but it also improves my mood, makes me feel more alert, and decreases fatigue.
- Meditation: Even a short or laying down I find any mediation with anapana (natural, normal respiration thought nose and focus nostrils as it enters or leaves the nostrils. ) It is a simple technique that helps calm and concentrate my mind. Goal is 1 hour each morning and night.
- Reiki, acupuncture, shiatsu and moxibustion: In order to release physical pain I receive these healing treatments instead of taking medication. When my physical pain is release then my emotional side effects can be helped and I am able to relax.
- Hypnosis: It helps to relax my mind, almost like almost taking a nap to me. Through hypnosis I am learning how to change energy of pain to less pain or no pain.
- Eating more digestible-fiber foods (whole grains and veggies): Being macrobiotic, this is not so challenging for me. I’ve also found that people who eat more vegetables have less or no nausea, vomiting, loss of appetite, or constipation.
- Not doing too much: I tend to do too much multitasking, so I’m making an effort to focus on one thing at a time.
- Asking for help: When I need to do something but am not able to do so, friends and loved ones can help with daily tasks to cut down on distractions and help save mental energy.
- Listening to healing music/music: Enjoy morning Bird singing, water sounds, healing bell and whole sound etc. Any music that feels good to me helps my emotions.
- Tracking memory problems: I keep a diary of when I notice problems and what’s going on at the time. Medicines taken, time of day, and the situation I’m in might help me figure out what affects my memory. Keeping track of when the problems are most noticeable can also help me prepare. I’ll know to avoid planning important conversations or appointments during those times. This record is also useful when I talk with my doctor about these problems.
- Smiling and laughing: I try not to focus on how much the chemotherapy side effects/symptoms bother me. Accepting the problem will help me deal with it. Being able to laugh about things I can’t control can help with coping. We probably notice our problems much more than others do. Sometimes we all have to laugh about forgetting to take the grocery list with us to the store. Smiling will bring happiness.
Day-to-day coping is important. One day at time!
I just do my best to enjoy my day—seeing the sunrise, going to my garden every morning and being around the trees, flowers and seedlings (I am growing sunflowers), walking with my dog(s), cuddling my cats, hugging and kissing Eric. On a good day, I see my friend(s) and go out to the beach.
And no matter what, I accept Sanae (myself), support her, and love her!
With all my love to you,
Thank you for your prayers and continuous support!
We are grateful and invite you to help us at this time by YouCaring Fundraisng to Support Sanae’s Recovery from Cancer or purchasing our books directly from us to cover my medical expenses.
Here are our books:
My post mailing address for sending your card, gift or check:
2610A 23rd St.
Santa Monica, CA 90405
I will not be able to personally reply to each person, but I promise I will read everyone’s messages, emails, and cards.
Love, Sanae 💖