I’m at day +77 from my transplant today. I had blood tests and a bone marrow biopsy done last week. We are going to talk with the Dr. today to go over the results. It will be interesting to see how well the treatment worked.
My hair is starting to make a bit of a comeback. My head was getting fuzzy, but it looked like a bunch of my hair turned white or gray. I decided it was all chemo hair and shaved it all off again. It’s fuzzy again after a week and has my darker color this time, so I think it’s about to take off (my hair typically grows fast).
My facial hair went through a weird cycle. I lost my hair on my neck, cheeks, my chin and the left part of my lip. It looked like I had a bad biker mustache. Now around my mouth, it’s coming back with a vengeance. Making up for lost time? Especially my left part of my lip, the hair is thicker than it was before and growing like it’s on steroids. Hopefully the right side of my lip catches up. Maybe I can grow a good curly mustache now?
As it turns out, one of the rare side effects of dexamethasone is uncontrolled hiccups. And guess what? I am lucky enough to have that side effect.
It was kind of funny the first time it happened, years ago now. Hic hic hic. I tried all my normal methods of stopping hiccups. Held my breath. Drank some water. Held my breath and drank some water, etc. Nothing worked. Hic hic hic. I thought they would just go away with some time. They didn’t.
I was hiccuping for hours and things were starting to get hairy. I was hiccuping up stomach acid, and it was getting painful, and I couldn’t get it to stop!
It turns out there is a simple solution for any hiccups, unstoppable or regular. Also, the great thing about it, it stops them very quickly.
Sucking on a lemon wedge. Something about the sour and the sucking motion, wipes out hiccups almost instantaneously. Plus, who doesn’t look great with a lemon wedge there instead of teeth, added bonus!
All you have to do is bite a little bit on the lemon flesh, to release the juice, and suck on the wedge like a pacifier. Make sure you are swallowing the juice as you do it. I was a little concerned when I was hiccuping up acid, adding more acid (lemon juice) to acid, but it stopped them so quickly, I almost felt like my esophagus’s life had just been saved.
Now if they ever start, I get a lemon wedge right away and not let it get that far. There you go. I hope this saves your esophagus’s life or at least some sanity from not hiccuping forever….
I had to add this one, it was too funny. I think I would make a good passport photo, imagine the immigration officer’s face.
(And I suppose they mostly work for chemotherapy and life in general.)
It’s one of my goals to write more practical every day posts and I have a bunch of them in my head. Here is the start of hopefully a good long line of helpful things for people going through it.
I had 10 days of radiation treatment to my pelvis and sacrum area, years ago. There are drug options for side effects, but I always prefer to do it naturally as much as possible, since they generally don’t have additional negative side effects. Here are some (hopefully) helpful tips.
Constipation:
When I think of unusual constipation, the first thing I think of is psyllium husks. Nothing but 100% pure fiber. (I use Anthony’s organic psyllium husk, from Amazon) Mix 1-2 tablespoons with a full glass of warm water, stir and drink it down. Usually within a few hours, your symptom will be relieved. You can use a tablespoon of psyllium husks with a glass of water daily if you know you’re going to be challenged.
You can combat normal constipation by just drinking enough fluids a day. I personally start my day by drinking 24oz of water and rub my kidneys. I’m always shocked to hear how little some people drink through the day. Your pee color will tell you if you are drinking enough. If it’s not light yellow or clear, DRINK MORE!
Diarrhea:
Try the BRAT diet, which stands for bananas, rice, apple and toast. I definitely had some bowls of brown rice and bananas when my intestines were getting hit by radiation on the way to my bones. Coconut oil or shredded coconut can also help take care of diarrhea.
Coconut oil or ghee topically can help tremendously with a sore butt from all the trips to the bathroom.
Dehydration:
The World Health Organization fluid replacement electrolyte solution is 1/2 tsp of salt, 3/4 tsp baking soda, a cup of fruit juice, mixed with 1 liter of water.
Obviously water is also important to drink and mineral water is also helpful (especially if your stomach is queasy).
Dehydration will happen from either the diarrhea or vomiting. Make sure to stay on top of your hydration! Try to drink a 8oz cup, per trip to the bathroom (diarrhea). Don’t start replenishing fluids from throwing up until you can keep them down.
Fatigue:
Exercise exercise exercise. It’s hard to get up and move your body sometimes, but it does help out tremendously. Keep in mind that you are going through a lot and not to push too hard or too fast. Just walking every day can be helpful. Give yourself permission to rest and get some help when you need it.
Dry skin/burns:
I’ll start with, Do Not put oil or lotion on your skin in areas that are actively being radiated! What until your treatment is complete. Oil with radiation will cook your skin and burn you, Kentucky fried human.
Make sure to be your own advocate for shielding your other body parts that don’t need to be radiated. It doesn’t hurt to make sure you get the best care/protection possible.
I used coconut oil and Vitamin E on my skin. You can just get Vitamin E capsules and break them open. Vitamin A cream is also supposed to be very helpful (I haven’t tried it though). It definitely took awhile for my skin to recover fully. Keep at it.
Blood counts:
As you know by now, I’m huge on nutritional diet. Vegetables can have an amazing effect on the quality of building blocks your body uses. Fresh vegetable juice gives you a large quantity of vegetables in a less filling application. Juice carrot, beet, green apple, ginger, turmeric, greens, celery, pomegranate and sprouts. Any combination works. Vegetable juice can also rejuvenate and cleanse your organs and combat constipation. Feed your blood!
Nausea:
I use ginger for this. I cook with it, I make tea with it. I put it in my vegetable juice. It works super well for me. Try have some ginger tea. Take 1/2-1 tsp of ginger powder and boiling water and pour it into a cup. Stir it a little while you wait for it to cool and that’s it. You can also take fresh ginger, cut it up into pieces and put it into a pot and bring to a boil. Either work. Try it.
Eating bland food or dry food can also be helpful. Not all nausea is the same, sometimes you just have to experiment with it.
Other things:
It is said outside of conventional medicine that a low glycemic diet while undergoing radiation therapy can make a huge difference in effectiveness. If you’re going to do it, you might as well try and make it as effective as possible. Sugar increases growth factor IGF-1, which suppresses cancer cell death. You have nothing to lose and everything to gain by trying it, why wouldn’t you?
Again outside of conventional medicine, Ashwagandha. Ashwagandha is said to make cancer cells more sensitive to radiation and protect healthy cells. You do have to take ashwagandha with at least 5% withanolides. There is a lot of ashwagandha out there, withanolides are the active compounds of ashwagandha. It’s not worth taking without the 5%. I did not use it while I did radiation, only because I didn’t know about it. Ask your doctor and make your own decision. I have taken lots of ashwagandha at different times in the past years. It does help calm and can help you sleep. It had no negative effect on the chemo I was taking.
I’m sorry, I debated with myself about posting more about this. Part of me doesn’t want to talk much about this anymore, but there was a thought I had, that I forgot to put in first time. So here we go…
82 grams of sugar per serving still just blows my mind. First, I would like to establish that sugar is not a main food item. Sugar is in the category of flavor enhancer, improver, almost like a spice but not quite. It’s something to add to something else to make it taste better. No one sits down with a bowl of sugar and just eats it.
Ok, now let’s imagine that we have a drink and we replace the 20 teaspoons of sugar with 20 spoons of something else.
First, let’s replace the sugar with 20 spoons of salt. Could you even find a person who would drink something with 20 spoons of salt? What would happen? According to Wikipedia: “Eventually the blood’s sodium concentration rises to toxic levels, removing water from cells and interfering with nerve conduction, ultimately producing fatal seizure and cardiacarrhythmia.”
Ok, that doesn’t sound very good!
Let use something that is good for you. How about Vitamin C? Our bodies don’t produce it naturally, so we need an external source. 82 grams, huh……ok, a person’s body can ingest about 10 to 12 grams, without negative effect. So about 1/8 of 82. Once you go over 10 to 12 grams, you experience diarrhea and vomiting. I’m not sure what would happen if you drank 82 grams of vitamin C in one go?
Certainly they have high dose IV vitamin C which bypasses your gut. I’ve had it myself. Without a properly trained doctor, that starts around 50 grams and ramps you up to the 80 level, you can die from it.
82 grams of cinnamon? 82 grams of oregano? 82 grams of cumin? 82 grams of Reishi? 82 grams of Chili pepper? Do you see my point? How insane 82 grams of sugar in a drink is? People only do it because it tastes good, but I promise you there are health consequences, just like ingesting 82 grams of anything else.
Here is my latest set of labs. The doctors decided numbers weren’t moving fast enough and took me off Dara sq and Pom and put me on the more toxic Carfilzomib and Cyclophosphamide (good ‘ol mustard gas).
I was a bit concerned about burning through Dara sq rather quickly, when it was potentially still working, although really slowly. I talked to the oncologist and he thinks it’s still viable in the future.
I read that Cyclophosphamide can be more effective with Vitamin A and Beta-carotene and less toxic with Reishi mushrooms. Carrot juice for the win!
Because I started on new drugs, they ran some labs weekly. It was quite amazing to see my lambda light chains shoot down in less than two weeks and are now in normal range! Looks like it also punches down my kappa light chains, which I didn’t need, but I’m still scrapping by. M-band didn’t run, I suppose that will be the best indicator for the myeloma.
CBC looks pretty darn good. Nutrition nutrition nutrition, that’s my motto.
Unfortunately, after each infusion (3 now), I’ve ended up sick for 3-4 days. First was a cold, second was a cold and fever (thankfully, I avoided the emergency room) and now a sinus cold with the third. Honestly, I can’t tell anymore if it’s a germ or a side effect. It seems like a germ each time, but it starts around infusion time. I’m finally on the mend again today and I get a week off from chemo, so that’s awesome.
Have you ever seen the children’s movie: Chicken run? Made by Nick Park, the same guy who did Wallace and Gromit. I think the guy is pretty clever and witty, so I liked his shows a lot.
Anyhow the old guy, in Chicken run is being fooled by the chickens and he says “Gnomes”, thinking gnomes are causing the trouble. I still think of that when I hear “Gnomes!”.
Some gnome houses sprouted up overnight in the garden.
It’s amazing how fast mushrooms grow.
I feel if there ever was a universal cure for cancer, it would come from mushrooms!
I do eat mushrooms, almost daily. I wouldn’t eat these ones though, being mostly mushroom ignorant. I also take reishi daily for the potential anti myeloma effect.
If you ever wanted to watch an awesome show (I think so anyhow), watch Fantastic Fungi (Netflix has it). They have some amazing time lapse clips and interesting mushroom information.
I haven’t felt like posting for a little while. Mostly been uninspired. I guess I did start one post, that I’m actually really excited about: Death. (Excited about the post, not death 😜).
I’ve been really enjoying writing it and I really hope it is helpful and makes you go “hmm”. It’s been kicking around in my head for months and I’ve been itching to write it. It’s an really important one for me, so I don’t want to flub it.
It was infusion day for me today. They had me take 40mgs of Dex (steroid) on top of the chemo. Dex at this strength, makes my lower back ache like crazy. It’s going to be awesome, can’t sleep and a achy back 👍🏻😝. Really, “everything is awesome”, (woah, Lego movie, I guess I have shows pouring out of my head).
The word SUPERFOOD. It is used way too much, thrown around by marketers. According to them, everything is a super food and we should all be super, but for some reason we are all fat, sick and dying.
I saw on a potato box recently, “Super food Potatoes!”. POTATOES are not a super food!!! They are super at filling up your stomach if you’re starving, and they taste good, but there isn’t a lot of nutritional value.
As a general rule I have about my food, is that it has to be Organic. There are too many chemicals out there in the food industry for me to trust. Countless chemicals are banned in Europe and other countries, that the US allows. Organic is always better than non organic, but I don’t know what’s available where you live. As long as you are keeping it real with yourself, do the best youcan and don’t stress about it (as you know, stress is horrible for you).
I generally eat everything cooked and not raw. I know there is some debate out there over that, when it comes to anti cancer diets. This is the logic that I subscribe to. Cooked food is broken down and more easily digestible. You do lose a bit of nutritional value in the cooking of the food, but if you are absorbing more of it, I feel you are better off. Plus, I can’t think of one person who is on chemo, whose gut bacteria and digestive system isn’t being nuked. Easier to digest equals big win for the digestive system and you.
Generally, the only thing that I eat raw, is vegetable juice, which has broken down already by the juicer and there is big loss in benefit in heating the juice.
Breakfast
I make a mix of oatmeal, amaranth and quinoa as my base. Oats help renew bones and connective tissues. They help with digestion and help remove unwanted things on their way out. Amaranth is an ancient Latin America and African seed. High in protein and vitamins. It has the highest protein content out of grains (although technically not a grain). Quinoa, generally strengthens the whole body. A good source of Iron, B vitamins and vitamin E.
Quick side note on iron. Iron can stimulate tumor growth. Iron based supplements should only be taken with a doctor’s guidance, to know if you are deficient (I’m personally not in favor of iron supplements). I think it’s been pretty well proven at this point that red meat based iron can easily feed cancer cells, because it’s very absorbable. Plant based iron is not well absorbed, so therefor a good source of it for people who have cancer.
We need iron for our red blood cells, hemoglobin and oxygen transfers. I have had my iron tested and I’ve had no negative consequences from my plant based iron intake. My hemoglobin has always looked good (knock on wood), despite it normally being a myeloma challenge.
Sorry, back to breakfast. One cup of cooked amaranth contains nine grams of protein with quinoa not far behind. Protein among other things, is essential building block for your immune system. I’ve had numerous chemo nurses and alternative doctors (both usually from Asia), grind me about getting enough protein. Both saying, “the ones who usually make it from cancer (and more recently from covid), are the ones getting sufficient amounts of protein”.
An adult male, according to our wondrous USDA, needs about 50 grams of protein a day. Breakfast is a good place to start.
I have my base of oatmeal, quinoa and amaranth. I soak about ten almonds overnight. I take off the skins in the morning and add that to the pot. Removing the skins makes them easier to digest (I bet you’re starting to notice a theme). Almonds are nutritional and body building. The skins taken off feel like rough paper, no wonder they don’t digest well.
Nuts on a whole are nutritional, but are hard to digest, so I’m cautious with them. Sometimes, I’ll add in some walnuts (anti cancer), but they are very acidic, and are one of those foods that can throw a person’s body out of balance (not that I’m in balance, aiming to be), from the perspective of Ayurveda (doshas) or Chinese medicine (yin/yang).
In a separate pot, I’ll make a stew of Goji berries (iron, blood building, antioxidant), blueberries, blackberry and raspberries (antioxidants). Sometimes, I add in some seasonal fruit for variety. I’ll add some spices, notably, ginger, a digestive aid, among just being awesome. Through all my treatments, I’ve only be nauseous a couple of times and that was when my intestines were getting blasted by radiation (I don’t know who wouldn’t be nauseous from that!). I owe it all to GINGER. It’s amazing stuff, anti nausea, appetite builder, digestion aid, fever reducer and phlegm remover among other things. I drank pots of freshly made ginger tea when I had Covid and I feel it’s a large reason why I skated through the Covid infection so easily.
Next, I will freshly grind a bit of chia seeds and a good amount of flax seeds. I could classify flax as one of the mother of all super foods. These little buggers are incredible. Loaded with vitamins and minerals. They are one of the richest sources of omega 3 fatty acids, which improve immunity and clean the arteries and are a must for this diet. I freshly grind them each day, because of the oil in the seeds can become rancid after a few days and it’s just so easy to do. Also, without grinding, they would just come out the other side whole and I wouldn’t receive any benefit.
Lastly, I scoop out one tablespoon of coconut oil as a healthy fat. A few years ago, my primary doctor wanted to check my cholesterol (probably to see if I could be put on cholesterol medication). I thought it was stupid, no way I have a cholesterol problem, with the way I eat. The test came back, and it turns out I did have a problem. It wasn’t with bad cholesterol, I didn’t have enough good cholesterol! (Although, I didn’t hear that from my doctor). Daily healthy fats are essential.
I mix it all together and breakfast is served! High nutrition and body building, two things I need. Please join me.
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.
It’s a steroid that is supposed to enhance chemotherapy. I told my brother the other day that I’m taking a steroid.
“Cool” he said, “Are you going to have huge muscles?”
“I wish, not that kind of steroid” I replied, remembering my very normal muscles from the mirror the other day.
“No, I just get to lose sleep and have my mental aspects altered”.
I’m currently taking 20mg Saturday and Sunday, which is the high. Steroid crash starts happening Monday night and all of Tuesday. It feels like I want to collapse and explode at the same time. Also it seems like there is a little angry gremlin in my chest trying to escape
I was eating lunch talking with my wife about it last month.
“I think the steroids are affecting me mentally, I feel more angry and irritated”. Mind you, I think most people would say that I’m a pretty mellow guy who gets along.
“Do you want to know the truth?” She asked me. “Of course I do”, I replied. “It’s affecting you a lot. I’ve noticed and the kids have noticed”.
“Good to know”, I said.
You can’t work on a flaw within yourself if you don’t quite know it exists. I feel like we are always kinder to ourselves in our minds and skew our perception. I had an old Filipino friend and co worker and his favorite phrase is “I’m a legend in my own mind”. I love that phrase and think of it when evaluating myself. It’s helpful to have a trusted family member/friend to let you know how the rest of the world perceives you.
Last Tuesday (steroid crash day), I could tell as soon as I was done eating breakfast, today was going to be a challenge day emotionally. I was GRUMPY. I decided that I was mostly going to try and keep to myself so I didn’t share my mental wonders with the family 😜. My poor wife decided she wanted to cheer me up a bit, but the gremlin would not allow it. GRRRRRR is what she got in return.
It is my personal goal to be constantly working on myself, especially mentally, to be in control of my mind. I spend time analyzing myself on why I react to certain situations and how to improve. Being grumpy, mad or sad is just a state of mind (or FEAR, that’s a huge one, needs it’s own post though). With training, you can take yourself from one state of mind to a better one.
I start with of a picture in my mind of who I want to be, to set my goal. That way I can compare the way I am to who I want to be. Certainly no one wants to be an angry grumpy bastard, even on Dex days. Try to improve a little every day and over time you will find yourself a better person.
Overall, I think I’m doing alright mastering myself, still lots of room for improvement, but then again I am a legend in my own mind.
About 4 days after my start of the Dara/Pom/Dex regiment started I woke up in the morning feeling awful. Of course that was to be expected having just started chemo again.
I stumbled into the bathroom to wash my face because I thought I had a large amount of sleep in my eyes. Wash wash wash…..hmm this doesn’t seem to be helping. I turned off the water and looked in the mirror to see my head swollen. Oh, what fun! I can’t blink proper because my eyes are swollen.
We called up the infusion center because a swollen head was not on the list of side effects. They said they would talk it over with the pharmacy and get back to me. They called back a short while later and said “we can’t find a swollen head a reaction to any of the drugs”.
I always find it reassuring when the people who are giving you these drugs say “gee, I dunno”. They have me taking zyrtec prior to the Dara injections to stop a allergic reaction. “Just keep taking the zyrtec daily and hope it helps”. Well, it did end up helping (I think), either that or the drugs wore off. My head doesn’t swell anymore, but my face still gets red and puffy one a week. Clearly a reaction to the dex.
I was eating breakfast that morning and I told my kids I should shave my head and dye my skin blue because I feel like Megamind. They agreed it would be a good idea.
Carrots Over Cancer 