I’m at day +77 from my transplant today. I had blood tests and a bone marrow biopsy done last week. We are going to talk with the Dr. today to go over the results. It will be interesting to see how well the treatment worked.
My hair is starting to make a bit of a comeback. My head was getting fuzzy, but it looked like a bunch of my hair turned white or gray. I decided it was all chemo hair and shaved it all off again. It’s fuzzy again after a week and has my darker color this time, so I think it’s about to take off (my hair typically grows fast).
My facial hair went through a weird cycle. I lost my hair on my neck, cheeks, my chin and the left part of my lip. It looked like I had a bad biker mustache. Now around my mouth, it’s coming back with a vengeance. Making up for lost time? Especially my left part of my lip, the hair is thicker than it was before and growing like it’s on steroids. Hopefully the right side of my lip catches up. Maybe I can grow a good curly mustache now?
Leading up to my stem cell transplant, I’ve had a few people ask me if I’m scared or afraid.
Having cancer, it’s a question that I get asked frequently at times.
For those who aren’t familiar with the transplant procedure, a person gets dosed with high dose chemotherapy, that kills all of your bone marrow. All of your blood comes from your marrow, red blood cells, white blood cells and platelets. Obviously, without those cells, you die (and people do from the procedure). A couple of days after the chemo, they infuse your own stem cells back into you and after a few weeks they engraft and your body starts producing blood again.
When I was first diagnosed, I definitely had fear go through me. With death looming over me and all that uncertainty, who wouldn’t be afraid. I went over that a bit in my post “The Elephant In The Room”.
Fortunately, a plan of action was formed and I learned a few weeks after my diagnosis, that I wasn’t powerless against cancer. There were things I could do myself that would increase my odds. I started transmitting my fear, although it still took time to work out. I had to face my fears otherwise it was going to drive me crazy.
Let me tell you, being afraid is EXHAUSTING.I just can’t do it anymore. So the answer to the opening question is “no”. I’ve more or less made my peace with death and once I got passed that, there isn’t a lot to be afraid of.
Being scared all the time, I don’t know how people can do it.
Fear is meant as a temporary mechanism to keep you alive. After a certain point, people let fear consume them, and it stops you from living.
Of course, the world just went through a worldwide scare with covid. I know people whose whole lives turned upside down with fear from covid. It was really amazing to witness. People wouldn’t leave their homes for anything. Spraying all their grocery’s with bleach. Avoiding all human contact.
I couldn’t help thinking, “if you’re terrified of covid, try having cancer”. I’m not belittling people’s reactions. Everyone is at a different point in their lives, being able to handle different levels of difficulty. It was just a bit odd for me to watch from a perspective of someone who has cancer. Having myeloma is like being hospitalized for Covid, waiting to see if it’s going to overwhelm your lungs or not.
Worrying about something is like paying interest on a debt you don’t even know you owe.
Mark Twain
I must say that I do find that I do have to remind myself from time to time, to not worry or be fearful. Fear is very good at creeping into the cracks in your mind. It plants little seeds that will grow into bigger things that can be very hard to get rid of.
Cancer test anxiety! What if the cancer is coming back? What if we can’t stop the cancer? Is that pain just a pain or is it cancer? What if, what if? It can go on forever, which is why I find it exhausting. If the answer was yes, to the cancer coming back or being unable to stop it, would worrying about it change anything?
Worrying about things will not change a single thing, so why spend energy doing it?
If you stop to think about it, fear pretty much always has its root in death.
If you are afraid of spiders, they are going to crawl on you and bite you and you’ll die.
If you are afraid of heights, you are going to fall off and die.
If you are afraid of the dark, something you can’t see is going to get you and you die.
If you are afraid of Covid, you’ll catch it and die.
If you are afraid of clowns, umm I’m not sure about that one, but it probably leads to death (🤔 they are creepy and get you?).
If you have cancer, you are going to die.
If we had an amazing perfect life, living in a bubble and nothing bad ever happened to us, we would still die. Death is part of life. Fear is part of life. Being paralyzed by fear is the problem. If I’m going to die from old age or cancer (or from clowns 😜), wouldn’t it be more useful, instead of being fearful, recognize it, overcome it and make the most of each day? Make a positive change in my little section of the world. Affect what I can affect. Wouldn’t you want to do the same?
You are either in control of your mind or your mind is in control of you. I prefer to be in control and not have fear dictate my life. If your mind is in control of you, then you have to work and train your mind. And believe me, it is work and it’s ongoing. No one is born with a perfect mind. It has to be developed and strengthened. Ironically, having adversity and overcoming adversity is one of the best ways to strengthen your mind.
When I was about 8, I had a little stuff animal T-Rex. It was only about 10 inches high. I really loved that little guy. One night I was in bed and I wished really hard that the T-Rex would come to life. I was pretty sure my wish would come true. I was lying there, thinking how cool it would be to have a pet T-Rex, and then it dawned on me, what if (there’s that “what if” again) it came alive while I was sleeping and started eating me (and I died)??? I quickly threw it out of my bed, across the room. I thought, “I’ll just see the alive T-Rex in the morning”. My mind had just created the impossible, and it was terrifying.
“Fear keeps us focused on the past or worried about the future. If we can acknowledge our fear, we can realize that right now we are okay. Right now, today, we are still alive, and our bodies are working marvelously. Our eyes can still see the beautiful sky. Our ears can still hear the voices of our loved ones.”
–Thich Nhat Hanh
I was trying to come up with the opposite of fear. Would it be bravery? That seems logical but it doesn’t quite seem to fit. A better fit in my mind would be, if you’re not afraid, you probably have peace or tranquility.
So how do you obtain inner peace or tranquility? Firstly, I would say it’s not something people can have all the time. It comes and it goes for most of us. After all, we are all human and have human reactions. You have to keep working at it, and do your best.
Some people obtain some peace through religion, prayer or being in a holy place. If you don’t believe in any of that (or it doesn’t work for you), try to spend time in nature, such at a forest or beach. In such places, you can face/talk about your fears, accept them and maybe find some contentment.
I like to spend time with giant redwood trees. When you are sitting next to a being that is 2000 years old and will out live everyone on the planet today, it can put life into some perspective. Connecting with nature energy heals your heart and mind.
Breathingtechniques can knock out fear quite quickly for immediate or unexpected fears. It helps rein in control the mind. Meditation helps you stay in control of your mind all (or more of) the time, so fear doesn’t take hold.
Practice forgiveness. You can’t have peace within yourself if you are carrying around the bitter baggage of the past. True forgiveness is a tough one for people. “I have forgiven you”. “Then why do you keep bringing it up monthly, yearly, every 5 years?”. If you can let go of grudges, then it’s easier to let go of fear.
You can practice gratitude. If you are thinking about things you are grateful for, and grateful for things that are going well in your life, you spend less time on fear. Gratitude keeps our mind in the present, whereas fear keeps our mind in the past or future.
Your mind can be either a strength or it can be a weakness. It takes effort on your part to strengthen and have control of your mind. I think it’s worth the investment of our time to do so, after all, think of the time and energy we currently invest in our fears.
Dale Carnegie says, “You can conquer almost any fear if you will only make up your mind to do so. For remember, fear doesn’t exist anywhere except in the mind.”
So snuggle with your stuffed dinosaurs, for they won’t bite. High five the next clown you see for trying to make you laugh. And maybe dying is really just the great next adventure.
If you recall the happiest moments in your life, they are all from when you were doing something for somebody else.
Desmond Tutu
Carefully watch your thoughts, for they become your words. Manage and watch your words, for they will become your actions. Consider and judge your actions, for they have become your habits. Acknowledge and watch your habits, for they shall become your values. Understand and embrace your values, for they become your destiny.
Mahatma Gandhi
If you want to be miserable, think of yourself. If you want to be happy, think of others.
Sakyong Mipham
We can complain because rose bushes have thorns, or rejoice because thorn bushes have roses.
I spent a bit of time working on the soil in the garden this winter. I looked at the existing soil and could tell it needed some work. I like to see my soil alive with worms and bugs. Where life is happening, it’s usually a good thing. I added a ton of self made compost and manure (the manure wasn’t self made 😜). With those things, came a lot of worms and bugs.
Digging my bare hands into the earth of the garden bed and I could pull out a good handful of worms. When I could see that, I knew we were in good shape.
I started some kale, purple mizuna and purple kohlrabi in late winter. I planted them in the garden right before my transplant, hoping to have some good nutrition out of the garden afterwards when I got home.
Mizuna is high in many vitamins, especially vitamins A, K and C. It’s also a good source of calcium, iron, and antioxidants. Kohlrabi is an excellent source of vitamin C and a good source of fiber, vitamin B6 and potassium.
The kale had gotten mature enough to harvest about a month ago. I picked some today for lunch and holy cow, the leaves were enormous! It’s the biggest kale I’ve ever grown. Maybe some of the biggest ever grown for the variety?
The cutting board is 18×13 and I don’t have small handsThe next generation of kale is on the wayThe kohlrabi is starting to bulb up. The leaves are really tasty to eat as well, they kind of remind me a bit of taro leavesInspired by last years successful celery grown in the garden, we are starting a bunch indoors from celery ends and then planting them in the garden when they are big enough
We went to the beach yesterday. We found a good spot for lunch. After sitting there for a few minutes, I noticed bumblebees were flying around in larger quantities than you normally see. I looked over and could see fresh water leaking out of the hillside opposite the ocean.
It looked like they were coming and going from whatever they were doing (visiting flowers?), and stopping in for a drink. Perhaps they were swapping stories at the water cooler? I thought it was pretty cool and thought you might like to see.
My eldest son is graduating from high school this week. I’m sitting here in California, weaving ti leaf leis. It is bringing back memories of learning and weaving ti leaf leis in my “Hawaiian Auntie’s” garage, so many years ago now, when I was a teenager. I lived on the island of Kaua’i for half of my life.
It got me thinking about traditions, as I was weaving a traditional Hawaiian lei. A ti leaf lei and giving a lei is not part of my born traditions. And yet, some Hawaiian culture and the islands are definitely now and forever part of me.
Some of my earliest memories are of sitting in my Ukrainian Grandmother’s kitchen in Canada, eating borscht and perogies. But, despite that being part of my born heritage, weaving a lei feels more part of me. (Although, Russia invading Ukraine does feel a bit personal, but I haven’t been to the Ukraine either.)
In fact, if I think about it, I probably have more adopted cultures than what I was born into, mainly Canadian and European descent. I have Chinese Buddhist culture now part of me, from learning about Chinese medicine and Qi gong. Also, I have Sri Lankan and Indian cultures weaved into my being.
I called my youngest daughter over while I was weaving the leis and asked her if she wanted to learn how to make a lei. All of my children were born in Hawaii, so I wanted her to learn. I’m passing on a little Hawaiian tradition, despite not being Hawaiian.
I just found it interesting, of things that become part of your being. You are born as one thing, and life’s experiences will add or change parts of your being.
Parts of Kaua’i still feels like home, even though it’s changed so much in the last 30 years. That got me wondering. Do you leave part of yourself behind when you leave a place that meshes with you? It’s more of a feeling when you go back to a place, than a bunch of memories that are resurfaced. A lot of cultures, and some scientists, believe that we are just energy. Do parts of our energy get infused throughout our lives?
Oddly enough, the place that I feel like I’m drawn to, is Japan. I’ve never been to Japan, but I feel connected to there. I flew over Japan on my way back from India a few years ago. We flew right by Mount Fuji, and I could feel myself being pulled. I hope to make it there someday. Maybe I was Japanese in my last life? I don’t know, I hope you enjoyed my random thought of the day.
Yukon is taking a break from a nap and striking up his regal pose, showing off his manly chest hair.
He says, “I’ve been working hard on my chest hair. It was cold this winter, so it grew extra long. I make sure to get lots of chest rubs, to get hand oil on it and it exfoliates my skin. I make sure to get extra exercise by stealing the human’s slippers and try and get them to chase me. My goal for next year is to keep working on it, and hopefully it will be black and curly. Doggone, I’m a manly!”
I had a simple strategy for my stem cell transplant. I thought about the procedure for a little while, and this is what made sense to me. For me, it’s all about increasing odds and outcomes. I viewed this transplant as a major ordeal for the body. You wouldn’t get off your sofa and do a decathlon! Why would it make sense to get off your sofa and do a transplant? I went into transplant training.
The procedure in its essence is killing off your bone marrow and therefore your blood as well. Trying to wipe the slate clean. It is regrown from stem cells that were collected from yourself previously.
My step one, thinking about it logically, I wanted to have the highest quality possible of stem cells that were going to be collected. After all, this little bag of stem cells is what was going to regrown all my marrow.
I’m a huge plant person. Growing plants isn’t complicated. Give them the nutrients, light and water they need in the right amount and they thrive. Humans aren’t much different.
I wanted to spam myself with nutrition. I tend to do that all the time, but I made an extra effort. Your food is your cell’s building blocks. Healthy grains, berries, a rainbow of vegetables, lentils, healthy proteins and oils. Diversity is the key.
(👈🏼 Bitter melon is great for detoxing your liver, yes, it’s very bitter).
Second, I wanted to detox my body as much as I could, from all the chemo and drugs I had done. I mainly did this using a little personal infrared sauna. I sat in the sauna daily at 170 degrees and let my body sweat out the junk it could. Besides the big nutritional benefit of fresh vegetable juice, it also detoxes your organs, particularly the kidneys, liver and intestines.
Thirdly, I increased my exercise regiment. Walking, running, weight lifting and exercise biking. I also made it a priority to go hiking for miles, as much as I had time for. Sweating and heavy breathing, helped detox. Increased breathing, increased oxygen for my cells. Plus, hiking in nature helped my mental facilities and forest bathing can have a positive effect on cells.
Fourthly, I needed to work on my mental game. I increased my breathing, meditation and Qi gong. I felt it was important to have a level calm head, so I could overcome the mental lows that I knew were coming up. I went over breathing techniques in my How to stop freaking out post.
Meditation is the best way to keep control of your mind. Early in my cancer journey, for some reason, I was resistant to meditation. I kept hearing how beneficial it was, and I eventually overcame my resistance. It was the single biggest reason for my mental U-turn out of cancer negativity. I highly recommend learning a simple practice and doing it daily. Qi gong is kind of like a walking meditation (I’m planning a series of posts on Qi gong upcoming).
I also feel that the power of music is underestimated. I worked on creating a playlist of uplifting and positive songs that I could listen to. When you’re down in the dumps, sometimes music can help flip your script. I ended up with a wide variety of genres that clicked with me. I used it to get my positive vibe up, especially while cooking (didn’t you know food tastes better if you dance while it’s cooked?) Although, during the transplant, I mostly listened to my favorite pianists, Ludovico Einaudi and Helen Jane Long (Ludovico’s songs Ascent Day 1 and Nuvole Bianche are epic).
So these were my pre transplant regiment. During transplant, I once more wanted to keep up as much as I could on the nutrition. This was the building blocks of my new cells. I wanted to create good tissue and give my cells what they need to thrive. I was really excited when they said I could drink fresh vegetable juice, I drank it daily.
Besides the vegetable juice, it was also imperative for me to keep up on my fluids. Drinking was also a challenge. I drank water, coconut water and bubbly mineral water for the minerals and it helped with the nausea. I also asked for if fluids every day whether I needed them or not. Certainly high dose chemo is highly toxic itself and the fallout from it is a lot of dead cells. I wanted to flush things out as much as possible once the chemo was done doing its job. You have to protect your kidneys!
(A juice man created by my daughter 👉🏻)
Having my GI tract destroyed was a challenge for wanting to eat anything. I mostly ate my normal breakfast just in a smaller portion. Mung beans and vegetables for lunch and whatever I could get down for dinner (by dinner I usually wasn’t interested in eating at all). I do feel like having the wholesome diet helped a lot with not having extreme nausea and keeping my blood and electrolytes up.
It was also important for me to keep moving every day and get exercise through it. After breakfast, I would do my Qi gong exercises. I would then take a rest and then no matter how tired I was, I’d scrape myself off the sofa and go walking in the park every day. I do believe movement is life and if you want to keep living, keep moving.
I’ve gone back to my pre transplant regiment except for the sauna, which I’m not allowed to do until day +60. I have random pain in some of my tissue, which can be a sign of toxicity. I’m looking forward to some good sweating. My GI tract went back to some semblance of “normal” at around day +27. The doctors and nurses keep telling me how good my blood numbers are. I feel like I got through it easier than some people, from reading their stories.
This is my strategy, I guess we will see where the chips end up. If the myeloma is going to thrive through all this, it’s going to have to do it eating broccoli.
Today is my four year cancerversary. Four years ago today, I heard the “you have cancer” words and my life flipped upside down.
I’m still here, I have no idea what the myeloma is doing. I usually don’t pay much attention to this date, but for some reason this year it’s sticking out. Maybe, since I just went through a stem cell transplant.
Life has changed so much in the last four years, it will be interesting to see where life is at in another four years.
Carrots Over Cancer 