Well, honestly, my reaction was that I was shell shocked. This took a number of days for me to process, and frankly I’m still processing the long term ramifications of this test result.
My bone marrow CLONOSEQ report came back. This is actually the first time the report was shared with me, so I got to read the full thing myself. This is the best, most sensitive test that can be done for myeloma, counting individual cells.
Zero cancer cells in 3,709,872.
This means I achieved a sCR or Stringent Complete Response from my Car-T procedure. It also means that I’m in complete remission from myeloma.
It was funny, it somehow, for me, has a similar parallel to being told “you have cancer,” which was such a gut punch. Now being told,
“You don’t have cancer”
“Wait, what?”
It’s been a long six plus years with cancer; I feel a bit astonished.
The CARTITUDE-1 and CARTITUDE-4 clinical trials just reported with the long term results of CAR-T Carvykti therapy results. 32 patients are still cancer free 5 years later (32 out of 97 patients, 33%), and doctors are starting to call them cured.
So I have a 33% chance to be cured of myeloma, something previously unthinkable. Of course I’m thrilled with the test result. But, I think it will be some time before the cancer nagging thoughts in my head go away. The question for all cancer patients, will it come back?
I’ve had the best test available for myeloma, and it didn’t find any. But, really, all the test said is I don’t have any in my left hip. Only time will tell if the myeloma has been wiped out or if there are a few cells hiding in my right hip or in a vertebrae in my neck.
“Try to live a normal life,” my doctor told me.
I find myself in between having future test anxiety and just not caring anymore (because I hate worrying and find it exhausting).
I was talking with my wife about my parallel and my dumbfoundedness. Her thinking was that I had an identity before life with cancer and then that shifted into an identity of a person who was trying to survive cancer. Now, maybe I’m a person who has survived myeloma, I’m going to have to reinvent myself again.
I guess the trick now is not to hold my breath, let time flow, and keep making the most of life.
It’s been a pretty crazy last couple of months in my myeloma world. My March labs were a bit iffy. Things looked pretty good, but I still had a hint of myeloma showing up. We were going to do a bone marrow biopsy, but that never happened due to something on the doctor’s end.
I went into April’s labs expecting more of the same, crossing my fingers for zeros. Most of my labs came back in the normal time frame, light chains still normal or low. My immunofixation electrophoresis (which is a myeloma blood test) didn’t come back in the normal time frame.
“What’s going on?” I asked myself. “Where are the results?”
The days went by, and they didn’t result. Finally, half of it resulted late in the week, and it showed a reading of my m-band of .2. Previously I was at zero, so this was not good.
The second part of the test came back that afternoon, and I didn’t think it was going to show anything new, so I casually opened it and looked at it.
“Positive for IGM Kappa”.
“WHAT?!?”
My version of myeloma is IGG Lambda. Why is it showing IGM Kappa?
Did the labs mix up my blood with someone else’s blood? I read the notes from the lab, and it says they ran the blood twice from two different vials to double check due to my igg lambda history. It was correct.
A quick search, and I found out it is possible to have double light chain myeloma. It’s like having myeloma twice. It’s very rare, and in only 1% of people with myeloma.
“Face-slap”
What did I do?
After a few moments, I turned on some snappy music and started to dance.
Can I dance?
No
This is really bad news. Why am I dancing?
Because at this point, I said, “Seriously f*** you cancer.” “If you are going to be so bent on killing me, we are going to do things my way. I won’t let you drag me down. I’m going to keep living until I’m not.”
That’s why I’m dancing.
Normally, I look at my labs with my wife, but I didn’t think it was going to be anything, so she wasn’t there when I opened it. I had to tell her the news. It was like placing a 500 pound sack on her shoulders. Being the loved one of someone who has cancer has to be one of the hardest things in the world to endure. I think most people don’t realize this, and it is greatly underacknowledged what they go through. It’s not the same as having cancer, but I think it’s up there on the toughness scale.
I expected a phone call from my doctor, but it never came.
I just kept living my life as much as like normal as I could for the next month. Another round of ivig came the next month, and another round of blood tests.
The timing of the return of the tests was similar. Light chains came first.
Light Chains –Low / Ratio – normal
I had to wait another day and a half until my protein electrophoresis came back. My wife and I nervously opened the first one. How much had things progressed in a month, I wondered?
M-band – zero
“Wow”, we said.
We held our breath on the second part of the result as we opened it since this was the one that showed IGM Kappa (or IGG Lambda).
Normal – no trace of IGM IGA IGG kappa or lambda.
My wife and I looked at each other speechless. We weren’t quite sure what to say. One, because of my previous month’s crappy labs, and second, for this being the first time in 6 years that I’ve had a normal result.
I had a meeting with my myeloma specialist a few days later. Zoom kicked on and the doctor first thing looks at me and says “you know, Jothi, I’ve never met anyone like you.”
“Umm thanks?”
He went on to talk about the IGM kappa showing up.
“I called up the lab director to make sure there was no mistake.”
“It’s unheard of someone developing a second mutation from a car-t. Maybe the cancer mutated with it’s dying breath.”
“It’s uncommon for a person to zero out this far out from a car-t.” (I was at 9.5 months post car-t)
“It’s also unheard of, a month later, the new cancer mutation being wiped out. There is no trace of myeloma in your blood. I’ve never seen this before, and I have no explanation.”
A few months ago, they were talking about putting me on treatment again. They wanted a bone marrow biopsy first, which never happened. The doctor is now throwing around the “C” word (cured), which I’ve personally never heard one say before. I’m left asking myself if something special just happened?
Now being a statical anomaly, I’m left wondering why with no answers. Did my car-t strategy of supporting my t-cells have an effect?
It’s too early to tell anything, and I know full well things can flip back the other way around quickly. I try not to get too low when bad things happen, the same goes for trying not to get too high when things go right. I still need a bone marrow biopsy to check things out on a cellular level. Without that being zero, this could be just a blip in the road. Even if it is zero, I need to be zero and maintain that for a few years before I can relax and let some breath out. Cancer is just that unpredictable and volatile.
My point with this post is not to toot my own horn or have people congratulate me. I’ve been playing the cancer game for a number of years now. I’ve been around a lot of people challenged by cancer, and I know firsthand how dire things can be at times and frankly have periods of hopelessness.
Obviously, I’m thrilled with the ways things have gone in the past month personally. I would be equally thrilled if my tale could lift someone else up and give them a reason for hope. That unexpected things can and do happen if you just keep dancing.
This is a repost of an post from a previous year. But as we are at this time of year again, I’m thinking about the gift of giving again. Something new that I’m reflecting on this year is that my children are aging. In my opinion, children, especially young children, really make Christmas time memorable. Their excitement and anticipation are just so much fun. It is really something special.
Another new experience for me this year is that my two older children have significant others in their lives now. Having two new individuals into our family is exciting. I couldn’t help fast forwarding in my mind 5 to 10 years to glimpse a picture of what our family will be, and what my wife and I have been working so hard to create is coming into fruition.
My youngest is now 14, and I’m realizing that I only have a handful of years left before he starts outgrowing the excitement. It will be awhile before the next generation in our family comes, so I’m really cherishing the present.
Anyhow, here is the original post…
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.
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.
The Stanford apheresis nurse called in the evening to let me know if they got enough stem cells. She sounded a little downtrodden, and I started to think, “Dang, I guess they didn’t get enough and I have to go back tomorrow”.
Then she got excited and told me they got a whopping 7.1 units in 4 hours. The goal was 4. For perspective, it takes 2 units for the transplant, to regrow your blood, and they want an extra 2 as back up, in case the first set fails. Guess I could do it 3 times, if it’s fun 🤪?
I guess all those vegetables helped out? It’s hard to get too excited about it though. I feel like I’ve cleared 1 hurdle and still have another 20 to go. Still, I’ll take my small wins where I can.
I get to go home and have a week off before the big test starts….
I’m at the Stanford cancer center right now. I’m sitting in a chair having my blood pumped out of my body. It’s laying across my chest and lap, on its way to a machine to filter out my blood stem cells. Another line, from the outlet on the machine, is running up my lap and chest and going back into my body. It’s rather odd (and maybe a bit grody) seeing your blood outside your body, in your lap, going in and out of your body. At times, I feel like my bones are exploding from the stem cell growth factor drug affecting my marrow.
I had to go to the infusion center last night to get a drug that encourages my blood stem cells to leave my marrow to go into my blood, so it could be collected today.
I saw my chemo chair, this one colored orange. It was in a large room that has multiple treatment chairs in it, separated by curtains, that is typical for these rooms. All types of cancer are treated in this infusion center.
I sat down in the chair, awaiting the nurse to run all the regular pre-checks, blood pressure, oxygen level, temperature, etc. She had to run off to do something else. I scooted my butt back and forth in the chair to get comfy.
The room was mostly empty, since it was at night, except for the chair next to me. Almost as soon as I sat down, a nurse went to the woman sitting next to me. I couldn’t see her, since the curtain divided the spaces, but I could hear everything.
“I have some bad news, unfortunately” said the nurse.
“Your labs just came back. It showed that your kidneys are starting to fail and your liver is in trouble. We need to run an EKG to check your heart.”
“Your tumor burden is too much for your organs.”
“We need to admit you to the hospital right now to help clear out your kidneys and liver.”
My heart went out to this woman. I wanted to get up and go over and give her a hug.
A soft sob came from the other side of the curtain.
“How long do I have to be hospitalized for?”
“We aren’t sure, at least a couple of days.”
My nurse came back.
She started saying to me, “Do you have this problem, that problem?
“No” I said, a bit guiltily.
Part of me felt guilty, I don’t know, humans are a bit odd. I guess, I was experiencing some survivor guilt? My situation has nothing to do with hers, and I suppose I could be in a similar situation in a few weeks with the nuclear bomb drop happening on me (sct).
There is really not much I could do for this person, but I still wanted to do something. The feeling of wanting to control a situation that I have absolutely no control over.
I finished my treatment. I was going to go over and just offer a few words of encouragement to this woman, after she was just crushed. But by the time I was done, so many nurses and even some family members showed up, her area was packed with people and activity.
I’m pretty sure I would have just been in the way, so I left.
I couldn’t help thinking, if my few words would had made any difference for her. Or if I wanted to say something, maybe subconsciously, just to make myself feel better about her situation.
Our time will come for all of us at some point. I’m grateful that I’ve found some peace within myself. It was just another reminder for me to be grateful for what I have and the health I have, whatever level that is.
My blood running through a machine, filtering out the blood stem cells.A snapshot of my specs, I guess I better sit back down, my return is low 😅.
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.
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.
Appreciation is a beautiful, soulful quality available to everyone in every circumstance—being thankful for life’s little treasures, grateful for the opportunity to begin the day where you are, appreciating the perfect place your karma has brought you to.
Appreciation is life-giving. Depreciation without appreciation is heartlessly destructive. Yet, it is the all-too-common way of our times. When something is done that is good, helpful or loving, it is often overlooked, treated as something expected. No acknowledgment is shown, no gratitude expressed. But if a shortcoming is seen, everyone is swift to point it out!
The wise ones knew that all people possess freedom of choice and the willpower to use it. Today that freedom is usually used, unwisely, to downgrade others, as well as oneself. Ignorance seems to be almost as all-pervasive as God. We find it everywhere and within every situation. It does not have to be this way.
Gratitude is a quality of the soul. It does not depend on how much we possess. Its opposite, ingratitude, is a quality of the external ego. When we are selfless, we give thanks for whatever we have, no matter how little or how much. When we are egotistical, we are never grateful or satisfied, no matter how much we have.
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.
Carrots Over Cancer 