One month ago, June 20, was my 13th wedding anniversary with Eric.
It was going to be in the middle of my second round of chemotherapy, so I asked Eric to celebrate a few days earlier on the weekend. I also requested that Eric makes a strawberry shortcake for us.
We had lunch with Michiyo and Nancy, and also dinner with Amanda and Jessica, to celebrate over two different meals. I wore the dress that Eric chose, and I added a pink cardigan to match my handmade rhodonite (helps emotional balance) necklace and bracelet and my amethyst and aquamarine bracelet (healing lymph and overall).
I was a little concerned that I did not look good enough for the anniversary, with my shaved head and being sick.
I told myself that I am beautiful no matter what, and what is important is how much I love Eric and appreciate him.
I am not much of a makeup person, but I decided to add color to my lips with organic hemp, which I just got at a co-op in Santa Monica. The color was very natural, and at the same time, it made my complexion much brighter. I liked the result a lot. This helped me realize I am “beautiful,” even though I have cancer and am in chemotherapy treatments. My style is to wear something comfortable with natural materials, with pastel colors to bring out my soul and add color to express my identity.
I feel that in this way, I can cheer myself up and show how much love I feel to my beloved husband, Eric, and the whole world.
I am more appreciative of my life than ever.
Thank you for your prayers and continuous support!
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 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.
Photo: EPOCH Chemo liquid
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.
Photo: Neulasta body Injector
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.
Photo: The second round chemotherapy as out-patient at UCLA clinic.
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
Frustration with Eric and other people
Photo: Resting with Tin Tin
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.
Notdoing 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.
Photo: Planted sunflower seeds
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!
I am so grateful to share with you a YouCaring Fundraising Campaignthat my friends (Jessica Porter and Amanda Plant) and my husband Eric have set up called Support Sanae’s Recovery from Cancerto give people a way to help Eric and I as we face the next 5 rounds of chemotherapy treatment as I recover from cancer of Diffuse Large B-Cell Lymphoma (DLBCL which is a non-Hodgkin lymphoma of Liver, stage IV) which I was diagnosed with spring this year.
I have had tears of the joy at people’s kindness and support, I can’t even express with words. And it is true, as my friend Jessica explains in her letter below, that this support is saving my life.
Thank you to everyone who has contributed so far, your messages of love and acts of generously donating has touched my heart deeply. You can read more about my journey in my Blog.
I decided to start this campaign (together with Eric and the amazing Amanda Plant) in order to help finance the chemotherapy Sanae is currently receiving. It’s never easy to ask for help, and Sanae is especially polite and humble when she needs assistance. So I thought I’d step in.
If you haven’t heard yet, Sanae has a rare cancer called Diffuse Large B-Cell Lymphoma (DLBCL). It’s a non-Hodgkin lymphoma, the diagnosis of which was a big surprise to all of us. As you know, Sanae eats and lives very naturally. She recovered from ovarian cancer over twenty-four years ago using the macrobiotic diet and a holistic lifestyle–forgoing radiation and chemo–and since then she has been spreading the word of natural healing in every direction: She has written books, opened restaurants, and counseled other individuals in healing crises… all the while raising dogs and cats, knitting sweaters and hats, making jewelry, teaching cooking classes, becoming a yoga instructor, making soap, growing organic gardens, studying Bach Flower remedies and aromatherapy. Even after her first chemo treatment, she knitted her own hat for her newly bald head (Eric shaved it), and says she is looking forward to sewing a dress when all of this is over. Phew!
So how did this happen?
In 2001, Sanae was in a very serious car accident, after which she was in a coma for three days. It was one of the many miracles of her life that she survived that accident, and doubly amazing that she can walk, not to mention hike and teach yoga.
However, during her recovery from the accident, she received a blood transfusion that contained Hepatitis C. She has been fine up until now, but especially after the age of sixty, Hepatitis C has a nasty way of setting the stage for other diseases, and Sanae’s form of lymphoma shows up at a disproportionate rate among people with the Hepatitis C virus. The tumor is in her liver, which points even more strongly to hepatitis being an underlying factor. Unfortunately, even though she and Eric did everything they could to shrink the tumor naturally, it was growing at a very rapid rate.
The good news is that the type of chemo she is receiving (Rituximab+EPOCH) has a 60-70% cure rate for this type of lymphoma, even when the tumor is in the liver. Those are fantastic odds!
The bad news is that she and Eric must pay $5,000 per round of chemotherapy, of which there are six rounds over the next five months. And that’s just a 20% co-pay after insurance has paid the bulk of the costs. That’s $30,000, altogether. And it’s not as if they can just let the bills pile up and deal with them later. She will not get treatment every 21 days until the $5,000 co-pay is paid.
As you might expect, the money pressure is high, and Eric is still doing private cooking to pay their day-to-day expenses, while Sanae is obviously unable to bring in any income for the foreseeable future.
So, I am here to ask for your support. If you have been affected by Sanae at some point on your life’s journey… if you have been inspired by her, or learned from her, or eaten at Seed Kitchen… this is a wonderful time to return that good energy. All we need is 300 friends to donate $100 each in order to reach the goal. Or 600 friends donating $50. No amount is too small, and every single donation will be met with deep gratitude. Of course, if you are in a position to afford a larger donation without being burdened financially yourself, bless you: This money is saving a life. Literally.
Let’s make the financial lifting easy so that wonderful Sanae can relax into getting the treatment she needs.
One final thing: I have seen Sanae many times in the last few months. When I first found out she was sick, I came to visit and her energy was pretty low. Over the next few weeks, it got worse, and worse. I became very afraid for her. Soon she was in terrible pain, as the tumor took over more and more of her liver. Amanda and I were with Sanae and Eric last month when she met her second oncologist–a female doctor straight out of Grey’s Anatomy–who told us that Sanae had only weeks to live unless she got aggressive treatment, and that this type of chemo could be effective. Within an hour, we were checking her into the hospital.
I visited a few times, but five days into her admission, when she was still receiving the medicine, I had a shock: She was strong, happy, and energized. The pain was gone.
But that’s not all.
Because she’s Sanae, she was taking 30-minute walks throughout the hospital twice a day. She was doing a hot body scrub every morning and night. She practiced yoga in her room, did self-massage between visitors, ate Eric’s healing macrobiotic food, and meditated like a champ. None of it felt compulsive or intense; she just had (and has) a profound love of life and an unflagging determination to live it. The nurses on the ward were saying she needed to come back and teach them cooking classes and yoga, which I’m sure she will do.
I will never forget sitting across from her, just absorbing her energy. I was profoundly moved and inspired. This is a warrior, I thought to myself. And she is. She is a living example of how strong natural foods can make us, and how they can nourish us deeply through the big challenges of life. If anyone is going to kick cancer to the curb (this time, with medical assistance) it is Sanae Suzuki. Will you please help her kick the medical bills to the curb, too?
Thank you so much for your time and attention. If you’ve read this far, I really appreciate it, and I know Sanae does too.
P.S. Please share this with anyone you know who might be interested.
Well, the next one will be super cool—Sinéad O’Connor style.
It was time to cut my hair after my first chemotherapy.
I love having a long hair, but it was time to say “good bye”.
Eric cut my long hair – it was uneven, but no big deal.
I finished my first round of chemotherapy for cancer ofDiffuse Large B-Cell Lymphoma (DLBCL) Primary non-Hodgkin of Liver, stage IV.
After the chemothrapy I had 10 days of serious bone pain from Neulasta shot (to help white blood cell level) side effects, I was alive again.
I still have some side effects from chemothreapy; fingers and toes have nerve and muscle problems such as numbness, tingling, and pain. Kidney pain and feeling fatigues, but alomost no bone pain.
I really wanted to be in my garden to plant sunflower seeds so here I was went to outside finally. I am hoping the seed will gieve the flowers bloom and I can see them from my bedroom window.
Feel so good to be in my garden to plant sunflower seeds.
Caterpillar ate all my fennel.
I am supposed to have six EPOCH + Rituximab chemotherapy treatments, but I did not decide to take all six yet. I am going to take one more for sure on June 19th, 2017 and take a PET/CT scan test to see if Diffuse Large B-Cell Lymphoma (DLBCL) Primary non-Hodgkin of Liver got shrunk or not.
Right now, I just want to enjoy my day, plant sunflower seeds, and be with my family again.
Being with my beloved cat family: Mai Mai (black) and Tin Tin (orange)
Enjoy being with my Eric and dog family.
Beautiful day to just enjoy!
Thank you for your prayers and continuous support!
I came home after seven days at the UCLA Medical Center in Santa Monica.
There, I received five days of EPOCH + Rituximab chemotherapy for cancer of Diffuse Large B-Cell Lymphoma (DLBCL) Primary non-Hodgkin of Liver, stage IV after I was told I had “weeks to live.” I wrote about it on my blog, “Only Weeks to Live” and “My First Chemotherapy.”
I was so happy to leave the hospital even all the nurses, staff and doctors were nice.
It was sunset time, so I asked Eric to drive along the beach. It was such a big, beautiful sunset, right on time. The smell of the ocean gave me proof of my living. Thank you!
I came home and smelled my garden when I opened the gate. The trees and flowers all welcomed me.
My persimmon tree welcomed me!
Then, I saw my dogs and cats family.
I was surprised to see that they were quiet.
They all smelled me and walked away; they must have smelled the chemotherapy. Usually they get so excited when I come home from a trip, but not this time. Even the most excitable dog, Happy, just came and put her head on my knee.
I told each of them, “Thank you for being so good while I was in the hospital. I am back and so happy to see all of you!”
They were happy, and at the same time, they said they wanted to respect my healing space, so they would be quiet. I could not believe how they understand so much.
Mai Mai (left) and Tin Tin (right)
Oro, Bubu and Leo
I realy wanted to take a shower or bath, but I have the PICC line on my left arm, so it is not easy to take them. I also felt very tired so I decided to just do a foot bath. It helped me and
It helped me and I slept so well the first night, compared to the hospital (there was so often nurses, doctors or someone was coming to my room check my tempreture, blood pressure and take blood etc.), even though everyone was nice It not easy to sleep there at all.
Here is a list of common side effects of most of chemotherapy that I was told:
Fatigue. This is a persistent feeling of physical, emotional, or mental exhaustion. …
Pain. Chemotherapy sometimes causes these types of pain:
Mouth and throat sores and pain with swallowing
Nausea and vomiting.
Easy bruising and bleeding
Anemia (low red blood cell counts)
Nerve and muscle problems such as numbness, tingling, and pain
Skin and nail changes such as dry skin and color change
Urine and bladder changes and kidney problems
Chemo brain, which can affect concentration and focus
Changes in libido and sexual function
What do I need to know about side effects?
Every person doesn’t get every side effect, and some people getEvery person doesn’t get every side effect, and some people get few, if any.
The severity of side effects (how bad they are) varies greatly from person to person. Be sure to talk to your cancer care team about which side effects are most common with your chemo, how long they might last, how bad they might be, and when you should call the doctor’s office about them.
Your doctor may give you medicines to help prevent certain side effects before they happen.
Some chemo drugs cause long-term side effects, like heart or nerve damage or fertility problems. Still, many people have no long-term problems from chemo. Ask your doctor if the chemo drugs you’re getting have long-term effects.
I woke up with my body trying to push out toxins. I had a headache, my hair was letting me know I had to wash my hair. Eric helped me wach my hair and I was so happy!
My hair and I were so happy after washed my hair.
I had uncomfotableness in my stomach and experienced body twitching. I was also nervous about getting the Neulasta shot that I had to go the next day, so I did not sleep well.
Nervous about getting the Neulasta shot…no smile.
Beautiful garden view from the Neulasta shot room.
The Neulasta shot was easer than I thought and the room had beautiful garden view helped me even I was not able to smile from headach I had already.
After the shot I did not feel much different, but at night I woke up with dry mouth and a lot of pain on my backbone a few times. By the morning, I had so much pain all over my bones, which I never expected. We humans have so many bones in our bodies. You can imagine if all of them were in pain at the same time. My body was screaming!
Other side effects included stomach discomfort, constipation ( I had bowel movement, but it was not easy like used to be and the Neulasta made more difficult) numbness of the fingertips —first the index fingers, and now all of them (also toes), a strange vaginal odor, hemorrhoids (just swelling), right side kidney pain. On my skin, I had spots (look like bruises or burns) along my spine; a birthmark/burn-type mark over my liver; and peeling skin on my hips, down to my thighs—more on the right side. Everything tasted bitter and metallic. I could not sleep at all because of the pain.
What do I do?
Just breathe and be me—that’s all I could do.
After the fourth day of Neulasta, I had a little fever, and the pain was not going anywhere. I did not know about Neulasta, so it took me by surprise to experience this much pain, which wiped me out for 10 days. I could not move or talk much.
So much bone pain – Neulasta shot wiped me out.
The only way I felt better was when Eric pushed on each bone, as gentle Shiatsu helped the pain. Also, when I received moxibustion on my bones, it helped.
Otherwise, I laid down and closed my eyes and I was just breathing and being me.
Just close my eyes and being me!
After one week, I am glad that I finally have a little less pain and I was able to eat.
Eating my brown rice miso porridge.
I had a good morning and all my dog family came to see me in my bed room. I love them so much and enjoy being with them again.
Enjoying being my dog family again.
Thank you for your prayers and continuous support!
After I was diagnosed only weeks to live because of cancer of Diffuse Large B-Cell Lymphoma (DLBCL) Primary non-Hodgkin of Liver, stage IV. I had to be hospitalized right a way by a wheelchair since I was not able to walk anymore.
My first two days at the UCLA Medical Center in Santa Monica, I had to have more tests to make sure my body was strong and suitable to take EPOCH + Rituximab chemotherapy (five days chemotherapy for 24 hours a day).
There were so many blood tests, and they pricked my vein totally 12 times the first day. I was dehydrated, and it was not easy to find a good vein. They put on a temporary PICC line finally the next day, so they would not have to poke so many of my veins anymore.
Temporary PICC line
It was incredible to find out that the PET/CT scan test showed ovarian cancer from 24 years ago, as well as heart and lung damage from my car crash 16 years ago. I had to take the ultra sound of my heart to make sure my heart is strong enough for the chemo. I have hepatitis C, and they told me I need to treat it once I get better from Diffuse Large B-Cell Lymphoma (DLBCL) Primary non-Hodgkin of Liver. They wanted to make sure I do not have hepatitis B, because if I have it, then I would not be able to get chemotherapy. I did not ask why, but the test showed I did not have hepatitis B.
PICC line for chemo
The Rituximab chemo was scheduled to start late Sunday afternoon, just before sunset. I got permission to go outside into the hospital courtyard with Eric and my friend Nancy before the Rituximab chemo. I thought I even had time to go home to see my dogs and cats family, but Eric and Nancy would not risk taking me
When I came to the hospital I was too weak and I was not able to walk, but can you believe that I was able to walk after two days in the hospital with the fluid to revers my acidic condition to more alkaline? I was greatful to the modern western medicine to help me.
I thought even had time to go home to see my dogs and cats family, but Eric and Nancy would not risk taking me home. They convinced me not to leave the hospital so I wouldn’t miss the chemo. I made a little laughing remark, “What a treasure to have my husband Eric and friend Nancy, who are more conscious than I, so I would not miss the chemo, hahaha!”
So, what did I do?
I walked around the courtyard and practiced yoga on the grass.
What a beautiful feeling, and the smell of ocean breath (the UCLA Medical Center in Santa Monica was on 16th and Arizona St. so close enough from the ocean), earth and grass. I was ready to receive chemo.
Yoga before chemotherapy
When I came back to the room, my nurse said, “You are back!.”
I said to her, “You must have trained my husband and friend so I could not even leave the hospital.”
“They were well trained,” she said. “By the way, I heard that someone was doing yoga in the courtyard. It must be you!”
I had just been down in the courtyard, and another nurse had seen me and told her. I said, “I can’t believe you already know that I was doing yoga.”
“Of course,” she said, smiling. “I think only you would do yoga in the courtyard before chemotherapy.”
I prepared my room by hanging my crystal balls on the medicine hanger and by the window, set my healing gemstones and aromatherapy diffuser with Bach Flower Rescue Remedy Club Apple and essential oil of frankincense (frankincense supports liver).
My hospital room shelf
I also put on the shelf a photo of Eric and the dogs to make me feel good about starting chemotherapy. I was not sure what all the nurses and doctors might say about it, but believe it or not, all the nurses loved my crystals, gemstones, and aromatherapy diffuser. They all wanted to come to heal themselves.
My nurse said Rituximab usually takes four to five hours for most people, but my doctors planned for 12 hours for me. I reacted to the Benadryl (they use it before Rituximab). It was a very scary feeling of my veins moving all over; at the same time, I felt drowsy and could not even move and talk clearly.
Reaction to the Benadryl shot- I had to closed my eyes for while
I FaceTimed Eric and told him what was happening he quickly show me how my animal family were doing at home, which helped me so much. I was not scared anymore.
I did not have many side effects, except a little itchiness on my left hand. Just being in the hospital was not easy. I missed the smell of my house, Eric, my dog and cat family, and the garden of trees and flowers. I made sure to meditate, even though I was lying down. I made my first day chemo!
EPOCH chemo started next day of late Monday afternoon. It was an orange color, like sunset. I said to a nurse that it is a beautiful color, so I know it will help me heal. She said, “I never thought of the color of chemotherapy liquid as beautiful. I wish all the patients were positive like you.” I just wanted to feel good in me before this chemical was going to be inside me.
EPOCH chemo. liquid
It was smooth sailing in the beginning, but I felt very heavy and dark as the night got deeper. When I closed my eyes I saw the deepest dark (more darker than black) with orange speckles moving so quickly all over. It was so scary and unbearable feeling, like an intruder was coming into my body slowly and could destroy me. I had to hold the tube of orange chemo liquid in my hand, and I started to talk: I know you can help me, but I am feeling very heavy and dark right now, since I do not know you yet. Please help me to heal, but do not destroy my good cells. I know you can do it.
I also repeated the Serenity Prayer over and over:
God, grant me the Serenity To accept the things I cannot change… Courage to change the things I can, And Wisdom to know the difference.
And also said,
This too shall pass, this too shall pass, this too shall pass…….
By morning, I had minor reactions—a little stomach discomfort, nausea and constipation—but my blood test showed that I did pretty well with my first day of EPOCH. I thanked to orange chemo liquid.
I noticed that I gained some weight from the fluid they had been giving me; overall, I gained 10 pounds in water content over three days. As you see the photos I looked very good.
I did a body scrub every morning, but I felt it was not enough. So after meditation, I did some gentle yoga and massaged my legs and feet. I walked/marched after breakfast and lunch, which made me happy and gave also a smile to people who passed me. Doing all these things made me able to not have blood clot shots everyday or have to take laxatives and a few other medications.
My walk/march after breakfast and lunch (you can see her crystals on the medicine hanger)
Meanwhile, my friends were coming to see me almost every day. Sally and Giorgio came to offer Reiki. Eric made breakfast before he went to work every monring at 6am, and Amanda brought it for me. Eric did not have to work in the afternoon, so he brought my lunch and dinner, and he ate my hospital vegan burger and salad, etc. After dinner, we watched Japanese Grand Sumo every night before he went back home. We did our best to make my chemotherapy week as like a vacation the best I could have.
Of course, I cried several times and did not want to be there at all. But I looked at the sky from my small window—every time, either clouds or birds were entertaining me to lift up my pain. One time I saw Kula (my dog daughter who passed last year); she was waiting for me to get better so she can come back to be with me. She said, The promise is, I am coming there, so you are not coming here.
Another incident that happened was that one day, before I was coming home, I was not feeling so well—I think I was just getting tired of being in the hospital and trying to keep my positivity high. I finished my meditation, body scrub, yoga, massaging my feet, and listening to my morning music, but it was not right. I was feeling low. A cleaning woman came into my room (usually it was a man), and she asked if it was all right for her to clean the room. I said, “Of course.” She went to the bathroom first and then cleaned the floor, etc. Before she left, I said, “Thank you.”
She said, “I am honored to clean your room. Everyone said your room is healing. I was so happy when I found out I was assigned to clean your room today. Your room smells so nice and feels good.”
I could not believe what I heard. I asked right away what her name was, and she said it was Rosarba. I asked her where she was from, and she said Guadalajara, Mexico. I told her I was so happy to meet her and that she was able to come to my room. She smiled.
After she left my room, I cried.
Why? I am not sure, but I felt that my existence was validated by this woman who came from Guadalajara, Mexico. Does that make sense? It did to me!
Whatever it was, I was able to make it another day in the hospital and complete my first chemotherapy.
Thank you for your prayers and continuous support.