Normal blood numbers look good. Cancer numbers look BLAH! I feel like my cancer cells see the cancer drugs and are flipping the bird and going the other direction.
It was a cold and windy night. My cousin Soren had decided to take his wife and family on a holiday. They had a spare room in the house they rented and invited me to come along. It was an odd vacation home. You had to take a boat to get there because it was on a tiny island the middle of the sea.
After we got warmed up and our arms recovered from all the rowing, we started settling in. I found my room, it was on the second story of the house overlooking, well of course, the sea. I dropped off my belongings and headed back down stairs. The rest of the family was sitting around a tall dining room table on black stools.
“What should we have for dinner”, Soren asked
“I want pizza!”, cried my niece.
“I want roasted vegetables with quinoa!”, cried my nephew (yeah right, good one).
“I want a drink”, cried my cousin.
All of a sudden, there was a roaring boom and the power went out.
“It’s probably just the gfci breaker” I said (of course the whole house is gfci protected being on a tiny island, surrounded by water, safety first).
I got up to check the electrical panel, but I stumbled backwards, because there was a big hairy man standing there, check that, this is my story, a beautiful woman standing there. (Hmmm…. My wife might read this, never mind, a big hairy man it is).
My eyes met the big hairy man’s eyes.
“I’ve been looking all around for you, Jothi” he said.
“You have?”
“I need to tell you something” he replied. Hmm… I thought to myself, what could it be?
“You’re a Cancerer” He said.
“Wow, that’s great news” I exclaimed. Of course of was lying, having no idea what a Cancerer was.
“Well, can I be one too?” asked Soren
“No, you are a Nuggle. Non-cancer folk”
“Jothi, We need to get you to Perpendicular alley and get you all signed up and ready for the adventure forthcoming”, said the man.
“Perpendicular Alley! Wow, that sounds incredible!” Although quietly in my head I was thinking it would be nice if it was a more interesting or flexible shape. “Let’s go!”.
And before I knew it, I was all signed up and on the program, I didn’t even fully know what exactly was going on, my life forever changed.
Please excuse my silly story parody. It’s been bouncing around in my head for awhile.
Have you ever noticed how people treat you different once they know you have cancer? It seems like either they can be overly sympathetic because they think you’re about to die and pity you or they suddenly don’t want to have much to do with you. “The very thought of your cancer make me feel so uncomfortable, that I can’t be around you”. Just like that, people can just melt out of your life. Which is fine, truthfully it’s best not to be around people who are like that. Their problem is within themselves.
I really like the song “Best Fake Smile” by James Bay. There is nothing like getting a fake smile. Please take it with you and go find what makes you happy and have a great life.
Well, to be fair, I’m not the same person as I was prior to cancer. Things seem clearer, simpler, to me. There is a new level of appreciation and gratitude for life. I also don’t seem to have patience for pettiness, selfishness or complainers. Not that I don’t have those things show up within myself from time to time, I don’t have patience for them there either.
I have met some amazing, chronically ill people in the last few years. Their ability to keep going with a gusto and still keep smiling with the challenges they go through on a daily basis is inspiring.
I recently watched a show about a 12 year old boy, who has sickle cell disease. Sickle cell disease is a condition where your red blood cells are not round, but in the shape of a sickle.
The consequence of that are fatigue, early cell death causing anemia or blocked blood flow causing pain.
There is no cure for sickle cell disease. Treatments include chemotherapy and blood transfusions.
Towards the end of the program, the interviewer asked the boy, “Do you wish you never had sickle cell disease?” The boy sat there quiet for a minute in thought and said “No”. I think that surprised the interviewer and he asked why. The boy said “sickle cell made me into the person I am today and it gave me a greater appreciation for life and what I have.”
“Wow”, I thought to myself. This kid is my hero! He is wiser than half the people you see walking down the street. Amazing people are everywhere and come in all sizes. Some light bulbs just burn brighter than others.
So the next time you pity or decide you aren’t comfortable with a cancer person (or other chronic illness person) in your life, look inside yourself and remember you could be losing out on someone who is truly remarkable.
It feels like a long time since I posted something, but actually it hasn’t been that long. I have been working on a few things, but they aren’t done yet.
I switched recently from getting Dara and dex weekly, to every other week. I seemed to be more or less humming along getting it weekly so that’s what I was expecting, getting it every other week.
Well, I was wrong about that. It almost seems like my body reset from the drugs and I was getting them for the first time all over again. Nothing major from side affects, other than extreme FATIGUE. I was a zombie for days. I had my normal loss of sleep for two days from the dex, but even on those days I didn’t want to get out of bed in the middle of the night to do things, like I normally do. I get the injection and dex on Saturday and more dex on Sunday.
Monday, Tuesday and Wednesday I was sleeping 9-10 hours a night. I’d go to bed tired and wake up just as tired 🥱. It wasn’t until Thursday, til I started snapping out of it. It would have been interesting to see a CBC, to see what the blood was doing. Red blood cell drop?
I was still up doing things, but as bedtime got closer, my bed was looking so good. “Honey, I’m going to bed!”
No chemo this week, I’m even on a Pom break. Blood tests at the end of the week.
Speaking of blood tests. I was reading an article about some myeloma patients relapsing after initial treatment with bispecific antibodies, which of course is what Dara is. HAHA, just what I need to be reading after starting initial treatment 😅.
I could see my mind, almost from a third party, start the fear cycle. It lasted a few seconds before I said to myself “Screw it, I’m not going down this road. It’s either working or not and that’s out of my control.” Keep living while you still have life and not worry about the rest.
I’ve been referred to Stanford for a bone marrow transplant. I have my meeting with them tomorrow. I met with them 3 years ago to go over everything and learn about it. I did not elect to do it at the time. Something about it never sat right with me. It just seems counterintuitive to me. Dropping an atomic bomb on my body, while they try and keep me alive, waiting for my body to pick up the pieces and put it back together.
I hired a myeloma specialist earlier in the year from UCSF. I had to pay out of pocket for it, since my provider claims to have expertise in myeloma and they wouldn’t cover it, since it’s out of network. I now know, their expertise is limited compared to the specialist and UCSF. American health care can be so frustrating 😡.
The specialist told me, that there are basically only four things that work against myeloma. Initial treatment, Bone marrow transplant, Dara and Car T cell therapy. There is some free knowledge for you from a specialist. Hence, that’s why I’m back to heading down to talk with Stanford tomorrow. I’ve learned to let go of things and just go with the flow in my particular point in the river.
My youngest son Rohan (12), decided he wanted to play baseball. They have a winter league starting up soon, so we signed him up. He’s really excited and looking forward to it. I decided to sign up to be a assistant coach for his age group. I’m not sure what compelled me to volunteer to be surrounded by a bunch of pre teens and teens. I’ll just have to not come on days that I’m affected by dex 🤯.
I do enjoy baseball. I played on a team when I was around his age. I remember being so competitive. I played first base for the beginning of the season. Our worse player got stuck out in right field of course. After seeing him not catch the ball repeatedly, I asked to be switched to center field.
I remember one game, the other team figured out that our right fielder had catching issues and kept hitting the ball to right. Hit after hit, run after run. I got so mad at my teammate. I was playing center and a good chunk of right, which of course is too much ground to cover effectively for one person. I was having balls fall in center because I was in right field, which of course did not help my mental attitude 😅. We lost the game of course.
Our right fielder had lots of fielding practice going forward and things got better, including his happiness. I’m sure he didn’t like dropping every ball that was hit his way. I’d sure like to go back in time and smack myself on top of the head to gain some sense.
Looking back on something like that now, it’s so trivial. Like a little league game matters in the grand scheme of things. It’s funny how a lot of things in life we give greater importance to than they actually have. One of the things that matter (in my opinion) with life, is the happiness for the people that surround you. I hope to pass that on to the next generation.
“Time is what we want most, but what we use worst.” – William Penn
“Lack of time” is the number one reason people cite for their failure to exercise, says the National Academy of Sports Medicine. It’s also why so many people fail to launch their dreams and goals.
In effect, it’s an excuse that causes us to abandon our capacity and ability up front. After all, why engage in an activity if you believe ahead of time it cannot be done because you lack the time?
The most successful—and fulfilled—people are those who truly value their time. Notice I did not say “manage” their time. It’s an important distinction.
Getting the most from your time is not just about making lists and being organized. While that can certainly be helpful, making optimal use of your time requires you recognize the great worth time has for you.
There is an economic aspect to time—trading the monetary value of your work time for something tangible such as a new sweater, home, concert, or vacation—and there is a spiritual aspect. Like money, time is a medium through which your spiritual values come into the material world. How you choose to invest your time is an expression of who you are and your deepest values as reflected in your work, hobbies, community commitments, and how you tend your relationships.
Every action you take—or non-action—involves an evaluation of your time, whether you realize it or not. It might be a deliberate thought process, or it can happen in an instant when you finish dinner and say, “I’m too tired to pay bills, I’ll watch TV instead.”
What are the criteria by which you evaluate your time?
Perhaps you start each day with a half-hour meditation. Why? Because it’s of greater value to you than anything else you might do at that moment such as sleeping a little longer or watching the morning news. Your experience has told you dedicating those minutes at the front end of your day makes you calm, focused, and energized so you can think more clearly and accomplish more each day.
How you choose to value your time is key, whether you are listening to Paraliminals, practicing Spring Forest Qigong, training for a marathon, restoring antiques, volunteering at a homeless shelter, or learning a musical instrument.
Let’s say you enjoy playing the piano and regularly practice to get better. Who cares? You can put on a recording and listen to the best pianist in the world all day long, so it has little to do with hearing the music.
You have placed a value on being able to play the music yourself. Why? Because it brings you joy and satisfaction. You don’t practice for the sake of practice. You practice because every minute you do, you are engaged in doing something you love or something that satisfies. Time flies by, and as you channel your energy productively, your skills improve and you become a better pianist.
As you go about your day, stop and ask yourself, “What is the best trade for this time?”
Ask it often—whenever you’re about to start a task or project, when you switch gears after your evening meal, or when you get in your car as you leave work (do you listen to talk radio, engage a language learning program, or use your commuting time to brainstorm solutions to a difficult problem?).
When you intentionally choose how you spend your time, you’ll feel more in control of your life as you direct your energy in the ways that best serve you and the world.
This is our family dog, Yukon. He is a 2 year old English cream Labrador retriever. He was born on a winery in Napa of all places. There was an English gentleman, who had 2 English creams as pets and were also his trademark for his wine. One was a boy and the other was a girl. Nature happened and Yukon came into this world.
He is a mellow, easy going guy. I wanted to get a dog for my children, to increase the happiness in our household. They have wanted to get a dog for a long while and I always resisted. No time like the present is how I find myself living more and more.
For some reason, beyond my reasoning, he decided that I am his favorite person. I don’t dislike dogs but the the rest of my family all liked dogs better than I. Go figure. I must need it more???
He is a goofy boy. His hobbies include loving anyone he can, watching squirrels, eating almond butter and popcorn, chasing the leaf blower, marking the neighborhood, playing, breathing in my face and helping me do whatever I do, no matter what.
This includes helping me: go for walks, eat my meals, garden, qigong, meditate, cook, vacuum, write (he’s under the table right now helping write this), take a nap, do laundry, get changed, take the garbage cans down the road and clipping my toe nails. We have nicknamed him, my shadow. As far as he is concerned, wherever I go, he goes.
He’s always ready for an adventure, no matter what it is. He likes to suck on the heads of teddy bears to calm down, I guess it’s like a pacifier for him? We also have a cat, Sherlock, who is 10 years old. Sherlock treats Yukon like an annoying little brother. Sherlock tolerates Yukon, but when he is in pissy cat mode, Yukon becomes a punchy bag. Yukon does find that entertaining though and gets to practice his boxing sidestepping moves.
He still thinks he a lap dog
An interesting thing I noticed about Yukon, is that he is always legitimately really happy to see everyone, all the time, no matter who it is.
Everyday is the best day, even if we just take out the garbage. Maybe the world would be a better place if we were all like dogs?
One of things that is a challenge for me with myeloma is that it is generally an older person cancer and most of the data out there is based on someone much older than I am. The median age for myeloma is 66-70. Only recently has it been showing up in younger people.
I’ll confess that I’m a bit of a data/numbers/stats person. How do I know if a certain set of data points are the way they are because it’s just myeloma or it’s because it’s off of someone who’s 70? The answer is, I don’t.
Most of the oncologists I’ve talked to like to say, “You’re young, you can take it”. Umm gee thanks, I get extra drug abuse because I’m young and can take it???? It’s a fine line between dying of myeloma and dying from drugs meant to kill myeloma. I like to keep that in mind.
The 5 year survival rate for myeloma is about 40%. Obviously, like most people, I want to be on the side of the 40% that is still alive. I want to be a myeloma person who is still alive in 10 years, 15 years, 25 years.
What’s my strategy to achieve that? A strategy that I believe can help a person who is any age.
By doing what is good for my body, down to the cellular level and bad for cancer. It’s funny how things that are really good for us are also good at getting rid of cancer cells (and other chronic illnesses, I might add).
The biggest foundational piece to health is diet. Without a healthy diet, as the first building block, it’s hard to have success with anything else. Everything builds off of food and drink. It’s easy for me to point to having a poor diet as part of the reason I’m in this mess to begin with.
Feed your body nutritional food that is GOOD for you and don’t feed yourself food that is good for cancer growth. It’s just common sense if you think about it.
NF-KB is the primary pathway for growth in Myeloma, regulating inflammation and immune responses. Doesn’t it just make good practical sense to eat an anti inflammatory diet as to not give myeloma what it needs to grow. We know sugar, dairy, highly processed foods, meat and alcohol are inflammatory for the body and feed cancer cells.
1. I choose an anti inflammatory diet that is plant based whole food which is anti cancer. Food that is full of life/prana/qi and not something that expires 6 months from now.
Some people call a whole food diet, full of vegetables and fruits, legumes, healthy grains and healthy fats extreme. If you stop and think about it, I eat the same way as my great grandparents did and every generation before them. Does that sound extreme? If you had a time machine and went back in time to the 1800’s and asked someone if they have an extreme diet, they would look at you like you were crazy. In fact, I eat better then my great grandparents, because I have access to so much more variety. Only ignorance holds people back.
2. Next, I make sure that I drink purified water. You only have to glance at the news to read about stories of toxic water in whole towns (Flint MI, South Shore KY etc.) that is undrinkable. The local governments come out and say “my bad”, leaving you to deal with the fallout. I use a RO water filter currently. We have pretty good water here in California, but when we change the filters, they are really disgusting. Filter your water!
3. There are basically two thoughts of dealing with cancer, killing it with chemotherapy, surgery or radiation or to block it metabolically (starve it). Metabolically makes the most sense to me, since cancer cells are just your cells gone wrong and I can’t kill my blood without killing myself effectively. Truthfully, I’ve been hammering away at this metabolically and I haven’t been able to get the results I want. The best I got the oncologist to say is “Your myeloma isn’t behaving as expected. You are a high risk patient who is behaving like a standard risk patient”.
I’m currently mixing both worlds of chemo and metabolic blocking. I do take supplements such as Curcumin, Reishi, D3/K2 among other things that inhibit myeloma growth (they inhibit other cancers as well).
4. “Sitting is the new smoking”, they say. Move your body! I stay active everyday, walking, hiking, gardening, bike riding and Qigong. Some say cancer is cause by stagnation of the body, in areas that lack oxygen. Exercise has lots of benefits such as increased oxygen, blood flow (looking at you revlimid non-blood clots), increased heart rate, plus it can get you out of your own head!
5. Speaking of heads, I’m pretty sure I suffered some sort of ptsd with the cancer diagnosis. I took me a couple of years working through stuff to overcome it. It was a big growth experience for me. Getting out raw emotions, breathing techniques and meditation is what worked for me. I still keep up with pranayama and meditation daily for upkeep.
I have had plenty of seemingly one sided conversations with God. One of the things that I’ve gotten back is, an overwhelming sense that I’m meant to go through this (for reasons that are still a mystery to me), so that is very reassuring for me.
6. Detoxing. I’ve spent a significant amount of time working on detoxing my body (and mind). I done detoxing methods from naturopath methods and I’ve gone to India twice for a major full body detox called Panchakarma, which is a month long process each time. I’ve definitely had some raunchy stuff come out of me. Of course we live in a toxic world and I’m continually having toxins come in no matter how much I avoid it. I use diet and infrared sauna to keep on moving things out that aren’t supposed to be there.
To sum up my strategy, I do what is good for me and bad for cancer. Using chemo when I need it (trying to stay away from it as much as possible). Keep moving and living. Hit the myeloma with certain supplements. Keep working on my head and remembering why I want to keep living.
A few days ago, my wife Vasuki and I went on a mini adventure. I saw on a map a few days prior that there was a beach, near Muir beach, that I didn’t know existed. I do enjoy going somewhere new to experience something different or unknown.
If you live in the Bay Area, I do recommend checking out Tennessee Beach located in Marin. It is a hike in beach, about 2 miles each way from the parking lot, but it is a flat hike, so quite easy. The hike itself is quite a nice hike with interesting things to see (wildlife, marshland, trees).
Tennessee beach is a rock beach, which was cool. The colors and formations were amazing. Mother Nature always seems to impress.
I’ve been thinking about possessions lately. I take our dog Yukon for a couple mile walk everyday around the neighborhood. He need the exercise and so do I.
The next block over, there is a thin man in his 70’s with white hair and one of those great walrus mustaches. He’s probably a widow and lives in an old house painted kind of a puke green. He has a dog as well, an older golden retriever that Yukon likes to gawk at every time he sees her.
He recently put his house on the market to sell. It’s very much a fixer upper, with siding falling off in certain places and mold growing on parts of the walls.
Being what the housing market is currently in California, it sold within a month and half, for way more than it should of. But, hats off to the guy, I’m happy for him for getting a lot for his house, and hopefully he will live happily ever after.
He did get to live in the house for about 2 months after it sold, so my dog and I still got to gawk at his house and his dog. He had a garage sale a week and a half ago for the pre move purge. A whole garage driveway full of stuff.
He sold what he could, but the next day there was a whole driveway full of stuff that was now a free pile. We stopped on our way past, to see if there was anything we wanted. I looked over the hoard and didn’t see anything that would benefit our lives and we kept walking.
I got to thinking, as I typically do while I walk, since my only company is more interested in peeing on things. This guy has a whole driveway full of stuff he doesn’t want. He tried to sell it and there is still a whole driveway full of stuff no one wanted to buy. It’s now been a week and a half since the free pile started and there is still a whole driveway full of stuff he can’t give away!
Wow, that’s crazy to think that he had all of these possessions that no one wants for I don’t know how many years. That’s some baggage.
Of course that got me thinking about my own family’s possessions. Let me tell you, we have STUFF. Having 4 kids with their combined 62 years of collecting. Add that to the 87 years of my wife’s and my collecting and that’s a whopping 149 years of possessions!
Fortunately we have had to move a few times, as recently as a couple of years ago. Nothing like moving to get you to pull out your things and look at them. We continue to purge, we seem to always have a bag or two that accumulates over a couple of months for Salvation Army’s thrift shop.
I’ve personally gotten extra fussy since the cancer diagnosis, about getting things that only benefit me or my families lives. Who wants to deal with a pile of extra stuff in the case of my untimely departure. If something doesn’t give me happiness, I don’t want it.
When you look at a item, does it fulfill a purpose or does it give you happiness that you own it? If it doesn’t, maybe you shouldn’t own it anymore. Of course when you bought the item, you were happy and excited about it. Toys are the best example of that. My kids darn near exploded 🤩 with excitement every birthday or Christmas (I’m a little jealous that’s adults loose that, I’m try to get that back a bit).
After the excitement fades, are you still happy you own it?
Long term storage cracks me up. Sure it has its uses, especially for people in between homes or business use. But if it’s used for people who just have so much stuff that they can’t fit into their homes and can’t part with, it’s just crazy. Paying hundreds of dollars a month to keep owning something that you don’t want to look at. America at its best.
It’s also funny, when you sell or give away a possession, you feel so much better and lighter now that’s its out of your life. In this case, less is more!
To have a better life, better your everyday life just a little. One way of doing that is to be not bogged down by your possessions.
I was reading various news channels today and I came across something that I have never heard before: CAR NK cells.
Having a blood cancer, like many others who also have myeloma, we certainly have heard of CAR T cell therapy. CAR T cells are genetically modified T cells that target and kill myeloma and lymphomas.
CAR T cell therapy is pretty cutting edge and effective but it does have some big disadvantages such as cytokine storms and death.
Are CAR NK cells the future? They don’t seem to currently work well with solid tumors but are showing promise with blood cancers including Myeloma.
Carrots Over Cancer 