It’s been awhile since I’ve felt like writing anything. I’ll have to try and remember what’s been going on, post CAR-T, in the last month or so.
I had my second infusion of antibodies and another round of myeloma blood tests. All my light chains were still about zero, below normal. My M-band is still hanging around with a reading of .5. That means that I still have cancer cells circulating in my blood. The doctor said since my light chains are basically zero, they expect my m-band to continue and drop, and hopefully disappear completely.
I have another round of blood tests this week. I’m very curious what my blood will say. I was scheduled to have a bone marrow biopsy a month ago. I was telling my doctor I didn’t see the point, since my blood was saying there was myeloma still circulating. Of course I was going to have a myeloma reading from my marrow. The thing I’m going for is MRD zero, which is no trace of myeloma in my marrow. So I got them to postpone the test.
I did end up having a few minor neurotoxicities, which turned my mind a bit sluggish. The extreme fatigue was a challenge, but I seem to be over both. I was on the antibiotic bactrim after my hospital stay, but it was dropping my platelets and red blood cells too much. Doctors are concerned with pneumonia post Car-t, so it was precautionary. They switched me over to another antibiotic, atovaquone, which is a liquid (?) type. It was basically like eating a sweet, good quality yellow paint. Gloppy, thick, and gross.
I ended up having an abnormal reaction to that stuff. It caused my inflammation to rise significantly, and it felt like I had thriving active myeloma again in my bones. It was painful, and I certainly didn’t want to feel like I had lots of cancer having a party inside of me after doing Car-t. I couldn’t help wondering if the treatment had bombed, because it sure felt like it. So it was a good mental struggle and stress, and was another hurdle to overcome. My last blood test said the opposite, so that took my load off.
So in the meantime of not doing anything medically related, I’m finding my body restarting its systems. Recently, I find myself saying “Oh yeah, that’s what it feels like to be normal”. I have energy again. My mind is sharp again. I’m not tired after doing a simple task. I’m not combating a steady dose of side effects from chemo. It’s funny what a person gets used to and becomes their version of “normal”.
I’ve been off chemo a few times in my myeloma marathon. I got Covid around 3 years ago, and the doctor stopped my Revlimid while I was dealing with that. I had a blood test before I was going to restart, and it showed the revlimid actually wasn’t doing anything. I decided to stop all chemo for about 8 months and try some alternatives.
The difference between then and now is that I knew the myeloma was increasing (very slowly) and contained somewhat, but I was getting worse over time. Now again, I’m off chemo, but it feels like the reverse is happening. I seem to be getting better over time.
So far, that makes me a big fan of Car-T. I’m still waiting and hoping the cancer zeroes out, and I don’t have to deal with myeloma. What kind of story will my blood write for me?
Part of my Car-T prep was to have an echocardiogram to check out my heart. The test showed I was mostly fine except for a potential problem with one of my valves.
This was a new problem from either the high dose melphalan or more likely from the carfilzomib, since that is known for beating up hearts.
Anyhow, they wanted me to have an MRI of my chest to further investigate my heart. I got the result back last night. I showed that my heart is perfectly fine (thank goodness).
“Grossly unremarkable”
That was the term they used, which is actually pretty funny.
I turned to my wife and told her, “I love you with all of my grossly unremarkable heart”.
We had a chuckle and I kept reading the report.
“An osseous lesion noted within the midthoracic spine, incompletely evaluated on this study”.
Son of a gun!!! Where the heck did that thing come from. I just had a pet scan a few weeks previously, and it didn’t show anything!
This was an (unexpected) blow to me. I haven’t had a lesion since more than 5 years ago, when I was first diagnosed. Now I have a little bugger popping up it’s head in my spine!? The ups and downs of myeloma 🤦🏻.
I needed to reset my head. I went and had a shower and then went outside and did some Qigong and meditation. Qigong and meditation are my go to for (re) leveling my head.
I’m still working out the last dredges of it from my system today.
I was cutting up some mushrooms for my lunch today. The thought popped into my head, that myeloma is a lot like mushrooms. Myeloma percolates in a person’s marrow, just like mycelium in logs for mushrooms. Then all of a sudden, when conditions are just right, a lesion seems to pop up, just like a mushroom after a rain!
Grrr….. I don’t know what the doctor is going to recommend yet. Radiation, chemo, leave it be? I still have 3-5 weeks until my engineered cells come back.
Leading up to my stem cell transplant, I’ve had a few people ask me if I’m scared or afraid.
Having cancer, it’s a question that I get asked frequently at times.
For those who aren’t familiar with the transplant procedure, a person gets dosed with high dose chemotherapy, that kills all of your bone marrow. All of your blood comes from your marrow, red blood cells, white blood cells and platelets. Obviously, without those cells, you die (and people do from the procedure). A couple of days after the chemo, they infuse your own stem cells back into you and after a few weeks they engraft and your body starts producing blood again.
When I was first diagnosed, I definitely had fear go through me. With death looming over me and all that uncertainty, who wouldn’t be afraid. I went over that a bit in my post “The Elephant In The Room”.
Fortunately, a plan of action was formed and I learned a few weeks after my diagnosis, that I wasn’t powerless against cancer. There were things I could do myself that would increase my odds. I started transmitting my fear, although it still took time to work out. I had to face my fears otherwise it was going to drive me crazy.
Let me tell you, being afraid is EXHAUSTING.I just can’t do it anymore. So the answer to the opening question is “no”. I’ve more or less made my peace with death and once I got passed that, there isn’t a lot to be afraid of.
Being scared all the time, I don’t know how people can do it.
Fear is meant as a temporary mechanism to keep you alive. After a certain point, people let fear consume them, and it stops you from living.
Of course, the world just went through a worldwide scare with covid. I know people whose whole lives turned upside down with fear from covid. It was really amazing to witness. People wouldn’t leave their homes for anything. Spraying all their grocery’s with bleach. Avoiding all human contact.
I couldn’t help thinking, “if you’re terrified of covid, try having cancer”. I’m not belittling people’s reactions. Everyone is at a different point in their lives, being able to handle different levels of difficulty. It was just a bit odd for me to watch from a perspective of someone who has cancer. Having myeloma is like being hospitalized for Covid, waiting to see if it’s going to overwhelm your lungs or not.
Worrying about something is like paying interest on a debt you don’t even know you owe.
Mark Twain
I must say that I do find that I do have to remind myself from time to time, to not worry or be fearful. Fear is very good at creeping into the cracks in your mind. It plants little seeds that will grow into bigger things that can be very hard to get rid of.
Cancer test anxiety! What if the cancer is coming back? What if we can’t stop the cancer? Is that pain just a pain or is it cancer? What if, what if? It can go on forever, which is why I find it exhausting. If the answer was yes, to the cancer coming back or being unable to stop it, would worrying about it change anything?
Worrying about things will not change a single thing, so why spend energy doing it?
If you stop to think about it, fear pretty much always has its root in death.
If you are afraid of spiders, they are going to crawl on you and bite you and you’ll die.
If you are afraid of heights, you are going to fall off and die.
If you are afraid of the dark, something you can’t see is going to get you and you die.
If you are afraid of Covid, you’ll catch it and die.
If you are afraid of clowns, umm I’m not sure about that one, but it probably leads to death (🤔 they are creepy and get you?).
If you have cancer, you are going to die.
If we had an amazing perfect life, living in a bubble and nothing bad ever happened to us, we would still die. Death is part of life. Fear is part of life. Being paralyzed by fear is the problem. If I’m going to die from old age or cancer (or from clowns 😜), wouldn’t it be more useful, instead of being fearful, recognize it, overcome it and make the most of each day? Make a positive change in my little section of the world. Affect what I can affect. Wouldn’t you want to do the same?
You are either in control of your mind or your mind is in control of you. I prefer to be in control and not have fear dictate my life. If your mind is in control of you, then you have to work and train your mind. And believe me, it is work and it’s ongoing. No one is born with a perfect mind. It has to be developed and strengthened. Ironically, having adversity and overcoming adversity is one of the best ways to strengthen your mind.
When I was about 8, I had a little stuff animal T-Rex. It was only about 10 inches high. I really loved that little guy. One night I was in bed and I wished really hard that the T-Rex would come to life. I was pretty sure my wish would come true. I was lying there, thinking how cool it would be to have a pet T-Rex, and then it dawned on me, what if (there’s that “what if” again) it came alive while I was sleeping and started eating me (and I died)??? I quickly threw it out of my bed, across the room. I thought, “I’ll just see the alive T-Rex in the morning”. My mind had just created the impossible, and it was terrifying.
“Fear keeps us focused on the past or worried about the future. If we can acknowledge our fear, we can realize that right now we are okay. Right now, today, we are still alive, and our bodies are working marvelously. Our eyes can still see the beautiful sky. Our ears can still hear the voices of our loved ones.”
–Thich Nhat Hanh
I was trying to come up with the opposite of fear. Would it be bravery? That seems logical but it doesn’t quite seem to fit. A better fit in my mind would be, if you’re not afraid, you probably have peace or tranquility.
So how do you obtain inner peace or tranquility? Firstly, I would say it’s not something people can have all the time. It comes and it goes for most of us. After all, we are all human and have human reactions. You have to keep working at it, and do your best.
Some people obtain some peace through religion, prayer or being in a holy place. If you don’t believe in any of that (or it doesn’t work for you), try to spend time in nature, such at a forest or beach. In such places, you can face/talk about your fears, accept them and maybe find some contentment.
I like to spend time with giant redwood trees. When you are sitting next to a being that is 2000 years old and will out live everyone on the planet today, it can put life into some perspective. Connecting with nature energy heals your heart and mind.
Breathingtechniques can knock out fear quite quickly for immediate or unexpected fears. It helps rein in control the mind. Meditation helps you stay in control of your mind all (or more of) the time, so fear doesn’t take hold.
Practice forgiveness. You can’t have peace within yourself if you are carrying around the bitter baggage of the past. True forgiveness is a tough one for people. “I have forgiven you”. “Then why do you keep bringing it up monthly, yearly, every 5 years?”. If you can let go of grudges, then it’s easier to let go of fear.
You can practice gratitude. If you are thinking about things you are grateful for, and grateful for things that are going well in your life, you spend less time on fear. Gratitude keeps our mind in the present, whereas fear keeps our mind in the past or future.
Your mind can be either a strength or it can be a weakness. It takes effort on your part to strengthen and have control of your mind. I think it’s worth the investment of our time to do so, after all, think of the time and energy we currently invest in our fears.
Dale Carnegie says, “You can conquer almost any fear if you will only make up your mind to do so. For remember, fear doesn’t exist anywhere except in the mind.”
So snuggle with your stuffed dinosaurs, for they won’t bite. High five the next clown you see for trying to make you laugh. And maybe dying is really just the great next adventure.
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 😅.
Have you ever given awareness or paid attention to your breathing? Sometimes when I’m watching TV in the evening, I’ll randomly do a check in, to see how my breathing is going. Sometimes, I’m surprised to find that I’m breathing rather shallow. Especially, I notice it when I’m watching sports and I want my team to win. I’m stressing out over something silly, like a sports game, that actually doesn’t matter at all.
Working, driving, family, friends, money, pets, a chronic condition, waiting on test results, any number of things or life in general, can be stressful!
I’ll let you in on a secret of mine.
I’m afraid of needles, especially blood tests. I laugh at the irony of it all the time. Go figure, I would get a blood cancer.
For months, in the last number of years, I have had to go in for weekly blood tests. I could feel myself wind up as the days went by, to see the vampires, got closer and closer. Feeling that heavy pit in my stomach. Sitting there, in the chair, as they put that rubber band on your arm. Waiting as they are about to stick in the needle. Darn! They missed the vein, now they have to dig around for it or stick me again (I actually have easy veins too). Sometimes, I break out in a sweat, heart pounding. Shaking, when it’s all over.
Well, that doesn’t sound like a good state to be in.
I was just put into fight or flight mode, and I need to be in rest and repair mode as much as possible. A person doesn’t think clearly when they are in fight or flight state.
Breathing is the best way to get back into rest and repair mode and stop stressing or freaking out. It doesn’t matter the reason you are freaking out for these techniques to work. Sometimes just giving awareness to your breathing can be helpful. Just recognize and correct the situation.
I would like to give credit first, mainly because I don’t think it’s said enough, to India, to yoga, to preparing to meditate and meditation. Not to our western version of yoga, the real deal thing developed in India, where these breathing techniques come from. I will always be grateful for the life altering practices that I learned there.
Technique 1:
Alternative Nostril Breathing. This is my personal go to. I do it when I feel stressed and need to calm down and reset.
Begin by holding your right nostril closed and breathe in through your left.
Next, close your left nostril and breathe out through your right nostril.
Keep holding your left nostril closed and breathe in through your right nostril.
Then close your right nostril and breathe out through your left.
This completes one set. Try and count to yourself the same number of counts breathing in and keep it the same number breathing out. Whatever number is comfortable for you. (I’m pretty sure I missed my calling as a nose model, what do you think? 🤪)
I also do a version of this, for at least 10 minutes, every night before I go to sleep. This version must be done when you are calm and not stressed. It’s the same except, you hold your breath for a count of 1 after you inhale both times.
Technique 2:
Sigh Breathing. I really like this one too. I do enjoy a good sigh.
Sit up straight.
Take a deep, slow breath in through your nose, filling your lungs to full capacity.
Hold your breath for 3-5 seconds.
Release your breath through your mouth with a sigh (or a good groan 😜).
Repeat until you feel better.
Technique 3:
4-7-8 Breathing. This one is amazingly good and quick for snapping you back into instant clarity. I think maybe it has to do with the lack of oxygen coming in at times. Again, alternative nostril breathing is my number one choice, but this one is really helpful in certain situations.
Start by exhaling completely.
Breathe in for a count of 4.
Then hold your breath for a count of 7.
Exhale for a count of 8.
Repeat. I find that it usually only takes 5 times or so to be re-centered.
A quick note on counting. Make sure you are counting the same way, with the same timing. I can count to 8 in the same time as 4, but that defeats the purpose of doing these breathing exercises. 8 should be twice as long as 4!
Technique 4:
Square Breathing. I don’t use this one much, but I know people who really like it.
For this one, the number count doesn’t matter, do what works for you, but the number has to remain the same (i.e. a count of 4 or 5).
Start by exhaling completely.
Breathe in through your nose for the count of 4.
Hold for the count of 4.
Exhale through your mouth for the count of 4.
Hold again for the count of 4.
Repeat.
Technique 5:
Straw Breathing. This is a fantastic one for kids.
Breathe a full breath in through your nose.
Puff up your cheeks with air and blow out slowly through your mouth like you had a straw in your mouth.
Repeat.
For me personally, I can get through my bloods tests and IV’s fine now (and most other things), without freaking out. I’m still very much a work in progress.
I was trying to think of a number 2 for de-stressing besides breathing. Breathing is number one on my list because it’s so effective, it doesn’t cost you anything, and you can do it anytime and anywhere. I would say that exercise would be number 2. But it’s funny though, if you’re exercising, give awareness to your breath, and you’ll notice you breathe very deeply and rhythmically, usually the same count in as out. So in the end, is it breathing again?
Breathing is so amazingly simple and it is so amazingly effective. This should give you a number of tools to help you get through life or de-stress. I hope you find one that you like.
Breathing will help you regain yourself when you lose yourself. But if you want to keep a level head and not lose yourself to begin with, meditate daily, but that’s a whole other topic…
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 