When I was younger, I used to embroider with my grandmother, probably mostly to keep me out of trouble. I wasn’t very good at it due to my young age, but it is still a memory that we created.
A few years ago, I was thinking about time. You pay time for all sorts of things, and a number of them you don’t end up with anything for your time. Excessive social media use is one prime example. Scrolling for a bit can give you some entertainment, but after a certain point, you don’t gain anything.
I was talking with my wife about doing some embroidery again. She got me a kit for my birthday, and she retaught me again. I completed one and decided to start on another. I thought it would be fun on the second one to take a picture each time I worked on it, and at the end, create a video. It took me nearly a year, with some significant time off from doing it due to treatment, but I finally finished.
I hope you enjoy watching my stitches through time.
I went to the lifespan doctor today. I sat down in her blue medical chair and waited for her to finish reviewing my paperwork. She finished up and said,
“Hold out your finger please”
You see, I was sitting next to the lifespan machine. She pulled out a thin cord that had a tiny needle attached to the end.
“Ouch”, I cried out as she stuck me with the needle and took a little bit of blood.
The dials and wheels on the machine started whirling as it processed my blood and was computing.
It printed out a small strip of paper with the number 521 on it.
“You have 521 days left to live”, the doctor said.
“Good to know”, I replied as I got up to leave. “Thanks”.
🤔 Of course, there is no such thing as a lifespan machine.
Sometimes, I feel like I didn’t have a worthwhile day and it was a wasted. It does leave me pondering, dang, what if I only had 521 days left to life and I just wasted one of them? Sometimes, I just have to live with that thought.
Whoever you are reading this, what if you knew you only had 521 days left? What would you do that would make them good days left?
For me, seeing my wife or kids have a good laugh and a big smile on their faces, makes it a good day.
Going out in nature and experiencing things that make me be in awe, is a good day.
Doing something creative, makes it a good day.
Spending 5 hours a day looking at instagram is a good day…… oh wait, Meta high jacked my account and wrote that in there! Actually for me, those are the days that I feel like I wasted, the ones I spend too much time looking at a screen (I only spend 5-10 minutes a few times a week looking at instagram).
Next time you have a good day, try and identify what made it good and try and duplicate it. Next time you feel you wasted a day, try and find out why it felt wasted and try and eliminate that aspect.
None of us know how many days we have left to live, 1 to 25,000, try and make them count in whatever fashion counts for you.
We don’t have a machine that tells us how many days we have left. I’m going to try and do my best not waste mine.
I was reading another myeloma blog today. The author, who has had myeloma for over ten years, was expressing his feelings of just being over it at this point.
I’ve been aware of the “just over it” concept for a while. I’ve seen in other people who had cancer, and I’ve seen it in older people who had lived long enough, having had their fill of life’s experiences.
An interesting thought popped into my head. I wondered what would be better, having a cancer like myeloma that can last years, or have a different cancer that just wraps up your lifespan rather quickly. It’s hard to be over it, when you don’t get the time to be over it.
I suppose it matters greatly on the person, their age, and how much they want to keep living. Not that you always have any measure of control over things. I’ve seen too many stories, such as an example, of a parent of young children, who develop cancer and are no longer with us, who probably would have rather kept living.
Time toxicity is something very real. I think the first time I heard of the concept was from reading an article by an oncologist. Basically, time toxicity in cancer is taking a chemotherapy that they can estimate, will add X amount of time to your lifespan. You gain X amount of time, but you will spend 3/4 of that time driving to the therapy, waiting for the therapy, getting the therapy, being sick from the therapy, getting tests for the therapy, etc etc…
So the end result is gaining a small amount of good lifespan.
Which leads back to the “just over it” mindset. If you are getting to that point, I think it’s important to review what your reasons for doing what you are doing are, and what you have to be grateful for in your life. Then it becomes easier to see what your effort is worth. And if it’s not worth it to you anymore, I think it’s ok just to be over it and move on from your body. It’s a personal and family choice.
I’m personally, not “over it”. Although, on chemo days, when I feel like crap, I do find myself asking the question, “is this worth it”. The answer is always “yes”, but I can see the perspective of “just being over it”.
Anyhow, that’s my random thought for today. Blood test tomorrow, maintenance chemo the following day. I only have blood tests every 2 months now, which is great. I’ll share the results when I have them.
If you think you are too small to make a difference, try sleeping with a mosquito.
Dalai Lama
To suppress the grief, the pain, is to condemn oneself to a living death. Living fully means feeling fully; it means becoming completely one with what you are experiencing and not holding it at arm’s length.
Philip Kapleau
The best way to not feel hopeless is to get up and do something. Don’t wait for good things to happen to you. If you go out and make some good things happen, you will fill the world with hope, you will fill yourself with hope.
Barack Obama
A good spouse and health is a person’s best wealth.
Benjamin Franklin
Insanity: doing the same thing over and over again and expecting different results.
Albert Einstein
Nations do not die from invasion; they die from internal rottenness.
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 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.
I was on my way out the door from Stanford a few weeks ago, and I was given this document about nutrition. I must confess, I rolled my eyes a bit and said sarcastically, “this ought to be good”.
To be fair, the nutritional advice that I got from my regular provider is “eat a bunch of doughnuts to gain some weight”. Also, during my transplant, I don’t know how many times I was told to eat ice cream and drink gatorade (which I didn’t do). So, I was expecting more of the same advice as I was on my way out.
I started reading and my jaw hit the floor in shock. I told my wife, “Wow, this is actually really good”. It’s so good, that I wanted to share it with you.
It’s solid advice whether you have cancer or you want to avoid getting cancer (or other chronic illnesses). I feel if all Americans adopted this diet, 75% of illnesses would go away or be prevented automatically.
One of my favorite lines from it is, “At least 2/3 of your plate should be comprised of fruits, vegetables, minimally processed grains, and beans”. I think most people’s plates are the opposite or worse. Observe what your plate looks like at your next meal.
I’ve been having this conversation a few times with my family as of late, most notably with my teenagers. Teenagers are at a transformation point in their lives, so it can be pretty easy to have conversations like this. But, I think it’s an interesting question for everyone.
What kind of person do you want to be?
When I was working and walking around the job, I would be constantly thinking. I had a complex job and being a supervisor, it was part of my job to figure things out and set up people with tasks for the day. Come to my knowledge, I tend to frown when I’m thinking.
“Why are you grumpy all the time”, someone asked me.
“What??? I’m not grumpy”, I replied.
“You walk around frowning a lot”.
“I do? I’m just thinking”.
Without my knowledge, I had become a grumpy person and that’s not somebody I want to be. I started consciously walking around with a smile on my face and all of a sudden I wasn’t a grumpy person anymore (although, I’m sure I still frown think from time to time).
We had a new neighbor move into the neighborhood last year, a few houses down from us. The husband (I’ll call him Fred for this story) and his wife are probably in their 30s and they just had their first child. We are fortunate to live at the end of a quiet street and all of our neighbors have multiple children, ages between 4-17. The road dead ends, so it’s a safe and perfect place for children to play.
Shortly after Fred moved in, he started grumbling and fighting with his neighbors on either side of his house about things he was unhappy with about their houses and yards. Fred also seems to like his drink too much at times and caused some late night disturbances with the neighbors across from him. As you can tell, he was quickly making friends.
After they had their baby, as any parent could tell you, the beginning months can be a challenge, especially for first time parents. Their baby is sleeping or not sleeping at all hours of the day. Fred has decided the whole neighborhood has to be quiet while the baby is sleeping during the day, especially all the neighborhood children playing outside. He has taken it upon himself to come out and yell at the kids for playing, which of course isn’t going down too well with the rest of us.
What about the garbage trucks collecting garbage? Delivery people? People cutting grass? Umm, ok….seems ludicrous to me. I get if the kids were being excessively noisy or obnoxious, but they aren’t actually being that loud.
Of course, after hearing about this man yelling at my son, I wanted to march down to his house and tell him a thing or two (that happened, but not by me). But then the thought came into my head, does he realize that he is the neighbor in the neighborhood that everyone hates? (I don’t hate him, I actually appreciate the learning experience).
It would seem to be more constructive to ask him if this who he wants to be (and to tell him about white noise machines, like fans or air purifiers 😜). Maybe he doesn’t know the neighbors despise him and are praying for him to sell his house and move out. I’m sure there is more to Fred than I know, but to the neighborhood, he’s the neighborhood jerk. I doubt that is who he would like to be.
I recently watch a show on Netflix called Mission Joy- Finding happiness in troubled times. It was about the Dalai Lama and Archbishop Desmond Tutu, their lives, challenges and why they are joyous despite having every reason to be bitter and be a complainer. It was a conscious decision not to be that way and live life joyously and spread that joy. I highly recommend the show. It was just a treat to watch those two interact, laugh and be brothers despite their religious differences.
The main conversation I was having with my children, was about complainers. Complainers are interesting people, because they always can find something to complain about, and it usually doesn’t take long for them to start once a conversation starts.
One of my kids was in the living room, and they were complaining about this and they were complaining about that. Finally, I had enough and exploded out, “why don’t you do something about what you’re complaining about instead of complaining about it”. (Dex might have had something to do with my explosion).
Complaining does nothing constructive, other than driving everyone around you crazy and not wanting to be around you. If something bothers you, do something about it. A person could spend more time and energy complaining about something than it actually takes to rectify the situation. (Of course, by my previous example, there are better or worse ways of doing something about things).
My wife and I were talking about complainers and she poised the question, “Do complainers, know they are complainers?” Briefly I thought and said “I don’t think they do”. I think what people who complain excessively are after, is attention.
I asked my children, “Do you want to be a person who stays in one place and just complains about everything in their lives or do you want to be a person who takes the lead, overcomes things and can change the world around them? Who do you want to be?”
Toxic people come up when you are dealing with cancer, more specifically, not being around toxic people when you are trying to recover from cancer. I do believe that, that’s completely valid and good advice. Toxic people are hard to be around when you’re healthy.
Then the thought occurred to me, what about toxic patients?
“God, why won’t this guy just die already!”
Certainly, anyone who has a chronic illness has a good excuse to complain. But to the point, where everyone is sick of you? One of my goals is not to become a person like that. That’s not who I want to be.
Early on in my cancer journey, about three years ago now, I went to India for about a month for Panchakarma treatment. The treatment is essentially purging your toxins (which can include mental toxins) and having your reset button pressed. I had just gone through the wringer with chemo and still having the mental struggles that come with cancer.
I wasn’t able to get a room at the clinic in India, so I rented a room a short distance away and took a tuk tuk back and forth. On the tuk tuk trip, sometimes I would see a crippled man on the corner, shirtless with a ragged cloth around his lower half. It looked like his legs had never worked from birth. He would be sitting on the ground, on his torso, with his skinny twisted legs folded behind him for probably hours.
The image of him is burned into my mind. From my point of view, I had been dealt a bit of a bum hand with myeloma. BAM, some perspective had just slapped me upside the head. What do I have to complain about? All of a sudden, I knew I had and will continue to have, a better and less challenging life than this person, myeloma and all. From now on, when ever I feel like complaining about things, an image of this man with his twisted legs, breathing in tuk tuk exhaust, pops into my head to remind me to be grateful for what I have.
I met a number of amazing people on that trip to India. Two that stand out in my mind were a Buddhist Lama and his interpreter monk. I have been blessed to have met and spent time with some very holy people in my life. These people have a presence about them and just being in the same room as them, you know that you are in the presence of someone really special. This Buddhist Lama is one of those people. But, this particular little story is about his interpreter monk.
She (yes, it’s a she, I generally think of monks as men) was born with a rare heart condition. She was very small and weak as a child and was always getting sick, because of it. She was so sick and weak one time she couldn’t get out of bed for months. She kept taking Tibetan herbs and praying, and she eventually got stronger and better enough to get up and go on with life, but still had this heart condition. She saw western medical doctors and had multiple heart surgeries, but the condition is not curable. Her heart can stop beating at any moment and she will die.
I did not know any of this when I first met her. She has one of the best, brightest smiles, that I’ve ever met and she is always smiling. How could this person exist, who is so full of life and happiness, literally have their heart stop beating at any moment? Shouldn’t she be grumpy, gloomy and miserable? Curled up in their bed, crying? She was the complete opposite!
Again, what do I have to complain about? She is a person who I would like to be like. She chose to be this happy, amazing person and not be consumed by what her body is doing. She has heart pains and challenges but sloughs it off, speaks many languages and be an translator for a important Lama. We had many conversations about life in the monastery, food and movies (she’s a big movie lover).
I’m in the yellow, the Lama’s interpreter, my Sri Lanka friend and the Buddhist Lama on the right
People will either show you who you want to be or who you don’t want to be. Things aren’t always easy, adversity comes in all forms, and everyone has it at points in their lives. Having cancer is hard. Having chemotherapy is hard.
Do I have the right to complain? Yes, I probably do. Do I want to? No, I don’t. Do I want to be afraid of cancer, afraid of it coming back, grumpy, a jerk, and someone that people don’t want to be around? No, I don’t. Anybody can justify doing/being anything.
Do I want to be happy and smile in the face of adversity, be a good person, a good example for my children and lead the way? Yes, I do. It’s who I want to be. It is my choice. Everyone has that choice. It is up to all of us to decide who that person is.
From the moment you were conceived, it was 100% guaranteed. Unavoidable, no dodging it. Whether you eat health food or junk food. Whether you have perfect health or have cancer. Whether you have all the money in the world or are dirt poor. It’s the elephant in the room, that people so desperately try to avoid. You are going to die.
Honestly, it’s not a concept that I thought about a lot. I had just completed my roaring thirties. Everything seemed to be going, more or less, according to my plans. I had my goals and I was on a straight path to achieve them.
All of a sudden, I had my “you have cancer” moment and the eventuality was there, looking me in the face. “Holy crap, would you look at that”. It was always there, but the possibility of it was so far off, it was easy to ignore.
You almost have to laugh at the absurdity of it all. Someone just died right now, as I typed these words. People die every day. People live every day. A 25 year old in the prime of life, perfectly healthy, who wasn’t supposed to die, died in an accident. Someone, with stage four cancer, who was supposed to die, got better and is still living.
The longer I’ve thought about it and believe me, I’ve given it some thought, I’ve come to this conclusion. When it’s your time, it’s your time. Not that I don’t believe in free will and willpower to change your perceived destiny. Cancer, treatment for cancer, accidents, pneumonia and whatever you can imagine, isn’t going to take me until it’s my time.
I think fear, hits the nail on the head for most people, when it comes to death. I do personally believe in a soul, an afterlife and reincarnation, so that is somewhat helpful in removing fear. Fear of the unknown. I don’t think I fear death, but honestly, that’s easy to say right now. I will see when the time eventually comes, how true that is. Talk is cheap. Nothing like things coming to a head, to test your beliefs and resolve.
Personally, it was interesting for me. My first thoughts after hearing those famous three words from the doctor, weren’t about my well-being. They immediately went to the well-being of my wife and my young children. It was a tremendous weight on me. Would they be alright without me? It felt like I was the Titan, Atlas, holding up the weight of heaven and earth on my back. It was crushing me.
It took me, probably 2 years to set down my gigantic boulder. I realized, no matter how much I wanted, at a certain point, it’s out of my hands. I can put in my best effort, my best foot forward, but at some point, it will just be my time. Death was standing there, looking me in the face, we smiled, and I said “I’ll see you when I’m ready, I have more to do right now”.
I had just come to peace with it.
Life will go on after I pass. My wife’s and children’s lives will go on after I pass. I don’t know if that will happen in a year or fifty, but it will happen. At some point they will pass. Life (and death) will go on.
I have new goals and things that I want to do with my life, before I’m done. I’m curious if I’ll achieve them before I move on.
I’m going to keep living while I’m living. I find the previous sentence an interesting one. Only because, a lot of people don’t actually live life, they just exist. Waiting for something to happen to them, waiting to die? I don’t know, I suppose it’s different for everyone. I like to do a check on myself from time to time. Am I living or just existing?
It’s interesting listening to people with near-death experiences. I think I’ve only heard stories about how warm, loving and life changing for the positive they were.
I don’t know Anita Moorjani personally, but from what I do know of her, I am a fan. She was diagnosed with Hodgkin’s lymphoma and did not elect treatment and ended up near death and in a coma a few years later, dying from lymphoma. She had a near death experience and lost her fear and ended up getting better. Quite an interesting story. She talks about her experience in a Ted Talk if you’re interested.
If you don’t believe in God or an afterlife, here is a scientific viewpoint. Albert Einstein said with his first law of thermodynamics, “Energy cannot be created or destroyed, it can only be changed from one form to another”. You are made up of energy, enough to power a 20 watt lightbulb at any given time. When you die, that energy can’t cease to exist. Where does it go?
In my small world, I can look around me and see people struggling with fear and their own mortality. I advise people to let go. Not to let go of living, but of the fear. Swimming upstream is exhausting, sometimes you just have to go with the flow of life. An orange is still going to be an orange, no matter how much you want it to be an apple.
It’s going to happen no matter what, so stop worrying about it. You are meant to live and you are meant to die. When you are doing what you are meant to do, that should bring some comfort.
I encourage you to think on it. Think about your life and death, and try to find some peace within yourself. After all, death could be the greatest adventure you don’t know about?
Carrots Over Cancer 