Eating to Feed Me and Starve Myeloma… Ha!

Hello 6.18.18

Confession time…
I broke out of my myeloma bubble and went to Country Concert, and I ate horribly all day long!

I actually wrote this late Saturday night, 6.16.18 , as I took my 40mg Dex steroids early morning, so I’m tired physically, but my brain is still so awake, so I write on!. I’ll sleep when the crash comes :))

Yep, I stepped out of my Antibacterial Bubble to play, and of course now, I’m wondering if I’ll “pay for it” in a few days… Last time I chanced being around crowds, I got horribly sick from trying to have a bit of fun. Here’s my posts from April, with that adventure and sickness consequences:

https://juliesmyelomamoments.blogspot.com/2018/04/yolo-another-scan-another-birthday.html

https://juliesmyelomamoments.blogspot.com/2018/04/caution-not-happy-post-thank-you-you.html

https://juliesmyelomamoments.blogspot.com/2018/04/myelomas-life-lessons-never-stop.html

But, tonight was a bit different than the Country Dancing (inside) Club adventure of April. Tonight’s venue was OUTSIDE at a Park, and I was firm about my no hug, stay way, don’t give me your cooties policy!! There were hundreds, maybe thousands at this Country Concert event, and since I was a local college counselor for 35 years in this area, I knew half of all the attendees. Joking!! Well, maybe a 100. It was so sweet to see my students and kid’s friends start to rush up to me to hug me hello, and me, in Turbo Reverse, waving my hands at them to stay away and get back. Several of them thought I was being my jokester self, and keep heading towards me, until I called out… “Noooo, seriously, get back, I’m on chemo, I’m immune compromised and I don’t want your cooties”…. Ooohhhh noooo, so many of them said, and looked a me quizzically. So many just don’t understand Myeloma is for LIFE and INCURABLE, and for me, CHEMO IS FOR LIFE and being IMMUNE COMPROMISED is for LIFE.

Yelling above the blaring music, I quickly update everyone about my cancer, chemo, treatment, etc, status. “No way Julie, but you look so good, how can you still have cancer, we didn’t know you were still having to deal with this, how can you look so great, and not look sick, etc”. Yes I am grateful and appreciative for all their kind comments, but I really need to design a Tee shirt that says… “BACK OFF! IMMUNE COMPROMISED CANCER PATIENT ALWAYS ON CHEMO, KEEP YOUR COOTIES AWAY!”

We had a fun time, but it wound up getting quite cool, and I didn’t bring a warm jacket, as before we left, I was hot and sweaty from my 40mg of Dex roids kicking in, so Jim and I left before the concert was over. We did last from 4:30 to 8:30! Super bad, was that I chose not to HYDRATE AT ALL there, as I didn’t want to use the PORTA POTTIES!! So I was really thirsty and ready to get home and hydrate! Each time I venture out like this, I realize how much cancer and treatments have changed me. I just don’t enjoy big crowds as much any more, and I can’t fully relax and enjoy anymore, as I always feel so “on guard”. My funny Food Confession story is to come further down, but first a little background to put it all in perspective…

People often ask me what I eat, what “diet” I follow, what supplements, vitamins, herbals, etc, I take to stay to well, healthy and be an 8 year myeloma survivor. Well here’s my trick: I’m on my own version of the ever popular “SEE-FOOD Diet”!! Get it… SEE…. FOOD… I see food that appeals to me and I EAT IT! ahahahhaaaa! For real! I do whatever I want now, but always focused on balance and moderation… with a day here and there of true “Whaaaatt Evvveeer”!!! Today was a What Ever day for sure!

Most of the time, I eat/drink really healthy and balanced, powering my fighter cells to ward of myeloma, and to keep my organs clean and healthy. My body doesn’t stand a chance battling back those stealth myeloma cells, if my organs fail me.

So I try to hydrate well. I have a cup or 2 of decaf coffee most days, except on Dex steroid crash day, as I have such metal mouth from the roids. I’ll take my Acyclovir capsule, and vitamin D3, B12 with a Boost, (low Glucose, lower calorie version), and then spend the rest of the day drinking water, 100% juice Cranberry watered down with plain water, and or fruit flavor infused Sparkling water (no calories or sugars, just pure water, no artificial sweeteners) with the Cran juice. Or I may squeeze a fresh lemon in my water. I may have OJ, or if we have Tangerines from our tree, I juice those. Yummy!! Evening, more of same, but usually have Celestial Seasons Herb Tea, or fresh squeeze a lemon for fresh lemon tea.

From our fruit trees!

I try to get something from each food group daily. I try to get enough protein, but I’ve never been a regular meat eater, and think I deprived my body of too little protein back before my diagnosis. So I try to eat nuts, cheese, cottage cheese, yogurt, no preservatives Deli meats, Lean Cuisine’s that have various forms of protein, fresh Tofu, occasionally, and if we dare to go out to eat, that’s when I get BBQ beef, such as steak, prime rib, etc. The Boost drinks I use, have 16 grams of protein. And my best of all protein from FRESH EGGS from our very own Hens!

As for Fruits and Veggies, I try to have greenery and healthy colors daily, but stick to frozen, cooked veggies most of the time, since 1- I am so regularly Neutropenic,and follow a Neutropenic diet, and 2- there are so many bacteria warnings and scares of Salmonella, e-Coli, Listeria, etc, with fresh vegetables and fruits, I’m scared to eat fresh! Here’s one of my faves:

But I do periodically take a chance, and eat fresh such as berries, avocados, bananas, cucumbers, tomatoes, but I am super hesitant to eat salads any more, which is sad, as I love salads with a whole variety of goodies in it, made by me. I also eat baked potatoes and yams, but as I write this, I realize I don’t do anything “regularly” , just what my super shopper daughter buys us, and also what appeals to my taste buds at the the time. I don’t go to the grocery stores, especially during cold and flu season, so we are very lucky to have our daughter be our amazing super shopper!

This was my all in one pan of fresh eggs and veggies, 
with a dollop of sour cream and a sprinkling of Parmesan

Ok, so you get that make the effort to eat really healthy most days, and something from most food groups. Oh, I forgot to mention that I love breads, but I don’t allow myself to eat the whole loaf on Dex days lol. I also enjoy quality Granola with Coconut milk. But again I don’t do anything the same every day… so funny to really realize this as I write it out.

SO WHERE AM I GOING WITH ALL THIS???
Today wound up a crazy calorie, genuine “SEE FOOD Diet” day!!


I had bought tickets to the Country concert a month ago on a frustration whim. After being so sick for so many weeks off and on, Nov, Dec, Jan, April, and having to absorb the reality of my Pet CT Scan Lytic Lesion Holes (see my most recent May posts)… I decided it was time to venture out of my sanitized bubble and try living life a bit. But all morning long, I truly wasn’t sure if we would actually go. The 40mg steroids did not give me the kick and boost it normally does, so I didn’t feel a desperate longing for excitement or socialization. But I paid for “VIP” hoping that would keep us away from the massive crowds, and also, they had advertised “special porta potties”, and seating. So I decided to go, see what it was like, and decide to stay or go, after perusing and cruising around.

The problem… to eat or not to eat from the Food Trucks there!! First of all, they were quite a walk away from our seating area (which was really bad planning on the organizer’s part!), as my ol hubby has a lot of mobility and walking issues, so bounding back and forth from our seating area to the food area was not happening… except for our super shopper, super food finder daughter Alissa coming to the rescue! There were a lot of Food Trucks in a variety of areas, that could be missed, so here’s what she found for us, and what I ate today before we went. It’s really ridiculous, as I never eat like this!!

This morning I had my double dose steroids with a low Glucose Boost.
Then some coffee, water, juice and water, etc
Then I realized we had some muffins, and special sourdough bread my son Scott brought from a specialized bakery, from a recent trip he had been on. Yummyyy!!! Warm bread with Cinnamon Butter. Carb and sugar overdose already. “See Food Diet” today for sure, LOL
So I balanced that with some Cottage Cheese
Then I had another Boost with my Acyclovir and Vitamins. I usually only have 1 Boost per day, but had forgotten I had one with my Dex steroids, right as I opened the 2nd one. Oh well.

I don’t think I had anything else, as I was a bit worried about what my GI might do at the concert, but generally on Dex days I’m well corked up!

First food hunt was with Alissa’s friend leading the way. Lines and Crowds, oh my! We found the Corn Dogs with fries first, and decided not to venture to the other area for more options, as the lines were long, and crowds thick! I didn’t realize they had a whole food truck court, just past where this first option was. Again bad bad design of the Organizers. Anyway, I seriously, never, and I honestly mean never eat those, as I don’t like, nor do well with fried food, but I thought Jim would enjoy it, so we bought 4 corn dogs and fries! I ate a whole corn dog! I’m not a fries person, so I didn’t eat those.

Not long later, as it was getting colder, food was talked about again. Alissa and her friend set off to find more options. They return with a Grilled Cheese and Bacon and a 4 piece mini pizza. Yes friends, I ate whole Grilled Cheese and 1 piece of pizza, and ate the cheese and sauce off a 2nd piece, but didn’t eat the bread/crust part lol. OMG have you added up the Carbs and Calories, and empty food value of what I ate so far?? I felt like a trapped animal by this point, as I wasn’t really enjoying the event a whole lot anymore, and I certainly wasn’t enjoying not hydrating, and eating well. I’m so used to being home now, and having access to what I want, when I want it. I’ve decided I just don’t like being in loud environments, where it’s struggle to talk, and worse yet, have people lean in to me, to hear what each other is saying. That’s deadly germ transfer, right there, like that!

So at this time, we decided to leave. I couldn’t wait to drink bottles of water on the way home and began my quest to hydrate now that I would be home, and safely by my OWN potty!

I was mentally adding up the unbalanced foods I ate, and laughed at my attempt to join “the real world”. Crazy how illness, mobility, and always thinking of the “what if” really changes a person. Things that used to be so fun, aren’t so much anymore. Everything seems like a “risk” now. Everything seems to have potential negative consequences. The things I used to do so spontaneously, are not worth it anymore, nor do they have the “reward” they used to. I always think that I’m missing out on so much, but I’m really not… cancer has changed me…

I couldn’t wait to drink in positive calories and hydration, so I juiced probably 20 Tangerines, and had a glass of Mango Smoothie. But then I saw part of a Blueberry Muffin left, so I sheared off the “muffin top” and ate that! All the while saying, “what the heck, who cares, today is today, and tomorrow I’ll go right back to broccoli and water” LOL. Yes, that’s the story (written while on 40mg of Dex lol) of my crazy erratic eating, trying to be “normal” and go to a concert, and how I’ve survived myeloma for 8 years on my own version of the “See Food Diet” !!!!

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Back to Reality…
I have my every several month’s appointment with my Stem Cell Transplant Dr this coming Thurs June 21. We’ll see what he has to say about my “Holey” scan, and current labs. 
Then July 3, Darzalex infusion, and July 10, my first Zometa infusion. 
I’ll be editing this crazy steroid post, but thought you might enjoy a “raw” post, written on a steroid buzz, where my brain was all over the map. I will always look for laughs, finding humor and sunshine in looming dark clouds. Hope you got a few laughs from this all over the map post :)) 

Live happy, live well, and make a difference somewhere, somehow, 
with someone or something as often as you can!