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.
(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.
Carrots Over Cancer 