Jothi Sendan’s myeloma cancer journey, thoughts and ideas
Last year, a stranger gave me this special regal geranium plant. It was just leaves when I got it, but I could tell from the leaves what it was. It was a variety of geranium that I wanted to grow, so I was pretty excited to get one.
I spent the last number of months looking after it, making sure it had what it needed to thrive and I was rewarded this. Definitely a showstopper in the yard.
I’m grateful for random acts of kindness.
I’m not sure who wrote these, but most of these are pure GOLD, enjoy.
𝐎𝐥𝐝 𝐇𝐢𝐥𝐥𝐛𝐢𝐥𝐥𝐲 𝐖𝐢𝐬𝐝𝐨𝐦:
Life is simpler when you plow around the stump.
Words that soak into your ears are whispered, not yelled.
Your fences need to be horse-high, pig-tight and bull-strong.
The best sermons are lived, not preached.
Keep skunks, bankers, and politicians at a distance.
A bumble bee is considerably faster than a John Deere tractor.
If you don’t take the time to do it right, you’ll find the time to do it twice.
Don’t corner something that is meaner than you.
It don’t take a very big person to carry a grudge.
You cannot unsay a cruel word.
Every path has a few puddles.
When you wallow with pigs, expect to get dirty.
Don’t be banging your shin on a stool that’s not in the way.
Borrowing trouble from the future doesn’t deplete the supply.
Most of the stuff people worry about ain’t never gonna happen anyway.
Don’t judge folks by their relatives.
Silence is sometimes the best answer.
Don‘t interfere with somethin’ that ain’t botherin’ you none.
Timing has a lot to do with the outcome of a rain dance.
If you find yourself in a hole, the first thing to do is stop diggin’.
Sometimes you get, and sometimes you get got.
The biggest troublemaker you’ll ever have to deal with watches you from the mirror every mornin’.
Always drink upstream from the herd.
Good judgment comes from experience, and most of that comes from bad judgment.
Lettin’ the cat outta the bag is a whole lot easier than puttin’ it back in.
If you get to thinkin’ you’re a person of some influence, try orderin’ somebody else’s dog around.
Live a good, honorable life. Then when you get older and think back, you’ll enjoy it a second time.
Live simply. Love generously. Care deeply. Speak kindly. Leave the rest to God.
Most times, it just gets down to common sense.
I’ve been thinking about gifts a lot lately, obviously because of what time of year it is. This is something I really wanted to write about, but I’ve been spending so much time with family as of late, I haven’t had much time for writing.
I have some fond memories of opening or receiving gifts. I remember exploding with happiness and joy, one year when I was around 11-12. I had just unwrapped a Game boy! I had really wanted one so bad. Can you imagine, playing black and white (actually, I guess it was kind of greenish) Tetris in the palm of your hands! (Yes, I’m a bit of a geek at times) It was so amazing. I can see any young people reading this rolling their eyes, but this was really cutting edge technology. It’s nothing compared to today’s technology, but back in my day, HOLY COW!
Or the time my Dad got a basketball hoop and hung it on our garage. Finally, I could shoot hoops as much as I wanted. One year, my Dad had some new asphalt laid on the driveway, which included in front of the garage. It was a brand new court, no more bouncing the ball on a random rock and shooting off in a different direction. The pavement was a thing of beauty.
I remember one birthday, maybe around the age of 11, I spent almost the whole day volunteering. I came home just for a little bit, barely had any times for presents or cake. I remember going to bed that night, thinking it was my best birthday ever. (I do remember getting Mario Bros 2 for NES, which was awesome until I realized Nintendo pulled a fast one on everyone, and it wasn’t a true Mario game). Maybe at this point, I had received a glimpse of giving?
Fast forward a few decades and I had children of my own. Holidays with kids in the house is 1000% better than not having them around. They just ooze with anticipation and excitement. It’s so much fun to be around. I loved shopping for and buying wooden Thomas the trains, legos and craft projects for my children. One year, I was hunting for a wooden Cranky the crane (from Thomas) that my eldest son really wanted. I finally found one on eBay, new and for a price I wanted to pay. Score, victory! My son exploded with happiness as he unwrapped, opened the box and started cranking the handle to move the string up and down, carrying a piece of cargo.
By this point, I was on board with giving. I was married and wanted to give whatever I could to my wife and make her happy. We started having kids and I wanted to give them whatever I could and make them happy. I was a giving pro or at least I thought (legend in my own mind again).
As it turns out, it’s actually quite easy to give things to children and they get happy and excited. What about adults?!?! Try to give something to an adult and have them radiate happiness and joy.
Throughout my life, I’ve heard the saying, “you can’t actually give anything away.” I thought, “that’s nice”, without understanding. Within the last 5-8 years, I think I finally have understanding and that increases every year. I’m a believer.
As it turns out (Again!), it’s actually the person who is giving, who is the one who is benefiting the most!
Wow, what a lesson, and I don’t think it’s a lesson that everyone learns. I’m not sure if I’m reaching an age that has some wisdom that comes with it (I still have a long way to go in the wisdom department, maybe by 80 I’ll be wise?) or it’s part of my cancer-university (growth) or what? Of course it helps to have some givers in my life that I can observe. Maybe in another 10 years I will finally get it completely.
I think people who just buy everything that they want for themselves, because they can or don’t care to take the time to give, are the ones who are really missing out. I find that a shame for them and actually pity them.
True giving, taking the time to think about, find, buy or make a gift and have it be something that brings happiness or joy to a person, is something special for the giver. They are the ones who get that good feeling in their chest, that true happiness radiating from and around their heart.
And if you want to talk about true happiness, try volunteering or giving your time to someone in need and receive a (golden) genuine “thank you” in return. Holy cow! That’s something that nurtures your soul.
Of course, you don’t always give or get what (they) you wanted. It’s probably not possible 100% of the time. Perhaps, it’s more about the energy or the wanting to give, that comes with a gift, than whatever the gift actually is. That’s maybe what’s actually important.
I can’t speak for my parents and the game boy, but I have a feeling, as with when Cranky the crane entered ours lives, that my wife and I were the real winners that day. As my years, holidays, birthdays and anniversaries go by, it’s more important for me to give than it is to get, because I’m the lucky one in the end, who receives the Gift of Giving.
I was doing my morning walk with Yukon this morning, and apparently Tuesday is yard day. There were numerous yard cleaning companies out cleaning up people’s yards.
I saw a guy up on the right, with his sprayer pack on, hosing round up on the 30 little weeds in the front of someone’s yard. It got me thinking, if people knew for sure, 100%, without any doubt that round up causes cancer, would he still do it?
It probably took 30 seconds to spray the weeds. It probably would have taken 3-5 minutes to pull them out. So he is gaining a few minutes to do something else with his day, at the expense of potentially giving himself cancer. Personally, I don’t think it’s a good trade. Is it worth the risk?
By reports published and court cases, I can say, that with high probability, that round up does cause cancer, particularly blood cancer. I unfortunately used it for years, and I believe it was a potential factor in developing myeloma.
Would you still feed your children Cheerios, if you knew it has round up residue on it? I wouldn’t, but unfortunately I didn’t know at the time and we had bowls together as a family.
Bayer, the maker of round up, decided in 2021 to stop selling the product to residential customers for non-professional gardeners because they kept on getting sued and losing to people with lymphoma.
What about all the people (or the dogs) walking through that person’s yard, getting the residue on their shoes and spreading it? I personally went as far as I could to the other side of the street, held my breath and hurried by.
If you knew, would you still do it?
I suppose, the answer would be, maybe? People know that smoking cigarettes gives you lung cancer, heart disease and other problems. They still do it. Mind you, they are addictive and round up isn’t.
NPR, on October 22nd, 2022, reported that 95% of the plastic that American’s consume are NOT recycled, despite being put in recycling containers, they still end up in the landfill.
If you knew that, that piece of plastic that surround the item you just bought was going to the landfill or float around in the ocean, would you have still bought it?
It sure made me pause and think. One would just assume that if it has a recycling symbol on it, it gets recycled. Apparently not. You feel lied to and betrayed.
That’s not even thinking about the health consequences of plastic. I don’t really want to get into that too much, otherwise I’ll be writing forever. I get why it’s so popular. It can be so customizable, cheap and useful. I personally hate plastic. The damn stuff is everywhere and in everything. It feels unavoidable at this point.
The New York Times wrote an article, The Types of Plastics Families Should Avoid. Basically types of plastics, phthalates and bisphenols, are bad news for you and your family. I feel like it’s only a matter of time, for it to come out that the replacement plastic for those types are also bad news for you.
For your health and the health of the planet, please vote with your wallet as much as possible! Buy metal, ceramic and wood when you can!
You can only do the best you can with life. A person has to wonder though, what would you change about your life, only if you knew…..
At a certain point, no matter who you are, you will face challenges or setbacks. Have your reaction. Then, the only thing to do is pick yourself back up, keep going and try again.
As I mentioned in my previous post, I developed a sinus cold/infection after my last dose of chemo.
My sinuses and nose were so plugged. I was laying awake around midnight, trying to sleep.
Growing up, I always shared a bedroom with my younger brother. I remember a time or two when he was sick and his nose was plugged up. He would be crying in bed and my Mom would come in to comfort him. I would lay there trying to sleep, drowning out the noise as best as I could.
He was crying and crying and he blurted out, “I can’t breathe!” At this point I had enough and yelled out, “breathe through your mouth stupid!” As you can tell, I wasn’t a very sympathetic brother. Of course he could breathe, he had no trouble crying his head off at my Mom, I thought.
I used to be a back or stomach sleeper. When I had a tumor on my sacrum, I begrudgingly switched to a side sleeper.
Fast forward in time to last week. Laying there awake, I thought to myself, “I can’t breathe!” My nose is so plugged. Another voice in my head said “breathe through your mouth stupid!” and this old memory came flooding back. At this point, I burst out laughing. The irony of it. Of course, I knew I could breathe through my mouth, I would just start drooling on my pillow (which sucks too), now being a side only sleeper.
I very much earned this lack of breathing experience. Life has a funny way of making circles out of things and teaching you some wisdom where it can. Be nicer to your brother!
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.
If you have cancer, you’re genuinely amazing!
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.
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.
Eat your vegetables!
Carrots Over Cancer 