Yes Myeloma, You Own and Control Me

6.28.18
Hello end of June!

I have so many different directions I could take this post. My brain whirring like a summer fan. My thoughts are continual, non-stop, my questions persistent, my shock and awe still ever present. I just can't stop thinking about my situation and what has happened to me. Perhaps with many, the initial cancer diagnosis is the shock. Or initial chemo treatments rock one's world. Maybe losing one's hair, or extreme side effects from treatment, brings cancer's reality home. Maybe hospitalizations and stem cell transplants slam cancer's reality home. But for me, the longer I survive causes me to realize how serious and tentative my situation is. Yes I was blindsided by each event I mentioned above, but it's the LENGTH of time I've lived with myeloma, and the CONTINUOUS, unrelenting status of  treating myeloma to STAY ALIVE, that never ceases to stun me and remind me daily, the insane circumstance I live with.

I am always processing how "out of control" I am of so many things in my life now. Prior to diagnosis, my body was basically my friend. Certainly not my enemy as it is now. I really didn't focus on my health much. Just took a lot for granted. Now, I can't help but focus on how little control I have over how my cells are continually cancerously morphing. How little control, actually no control I have, over deadly myeloma cancer cells multiplying defiantly, stealthly 24 7. I feel limited control over my future, my treatments, as cancer patients are completely dependent on medical science research for treatment pharmaceuticals, and on our medical professionals that determine what medications to treat us with. We like to think we are in control of our lives, and to degrees we are, but ultimately, not.

I can't help but remember my past days of carefree health, where I barely took any medication at all. I grew up with barely an aspirin in the house, as my parent's were "grin and bear it", anti medication type of people. Maybe we used aspirin for fevers, "Bactine" for cuts, but I don't recall knowing about Tylenol, Advil, cold/flu medications until I was a married adult. My parents took pride in having dental work done without Novocaine! I wasn't quick to give my kids pain meds either, and basically we were all really healthy people that didn't get sick or injured much, and didn't need pharmaceuticals. As I write this, I'm trying to recall what meds we did take. Allergy meds for all the seasonal polllens and irritants, and I developed hypothyroidism early in life, so I was on Levothyroxine for that. I can remember when people were over, someone might ask for a pain med, or allergy med, and I'd have to scramble to see if I had anything, and that it wasn't expired. We were so fortunate to be so healthy, carefree, and our bodies our friends.

Me, at about 14 or 15-
So brave, no drama!

How different my life is now, thank you myeloma.

A drawer in the kitchen holds all my myeloma meds, and supplementary pills. I have 2 pill boxes. The daily Monday through Sunday plastic boxes, that I once thought was only for "old people" or the "really sick". Guess I've joined that club. One box has Pomalyst, a half Benadryl, and a .81 aspirin, refilled 21 days. Then the other, Acyclovir, B12, D3. Also in this drawer is a variety of children's fast melt Tylenol and Advil, as well as adult strength. A variety of allergy meds, such as Benadryl, Claritin, etc. There are other Vitamins I irregularly take, a supply of Imodium left over from my "volcanic diarrhea" days, and older prescriptions for pain, muscle relaxants, nausea meds, antibiotics, etc. Most of those are expired, as I rarely need those. Our secondary "medicine cabinet" in the bathroom holds Salonpas, BenGay (for all my achy muscles), Pepto Bismal, Imodium, Tums, etc (that thank goodness I don't use those much anymore), and all of Jim's medications. And lest I forget, the refrigerator, holds several syringes of Zarxio (Neupogen), for when my WBC and ANC drops to Neutropenic status. But I know well, this is "Nothing" compared to my fellow myeloma warriors who have excruciating bone pain, continual infections, and worse side effects than I do...

But what I've really been processing recently, is my and all patient's lack of control over our treatment options, and ultimately the longevity of our lives. Yes we agree to myeloma treatments, but we are solely dependent on developed medications, what our Drs recommend and what insurance pays for. I know of so many myeloma patients that have run through all the "traditional" myeloma treatment options. Clinical trials are their only option, or the new Car T trials, or even sorting through past treatments, hoping to combine old and new meds for a new magic. See, choosing or agreeing to treatment is not like deciding what flavor of ice cream we want. We have to follow established research protocols, Dr analysis, pharma reommendations, insurance approval, etc. I understand "the why" for safety's sake,... but not being in control of my life, I will always struggle with.

Back when I was diagnosed, and prepping for my autologous stem cell transplant, I was in the "deer in the headlights" stage. I had immediately read till my eyes and brain hurt, but I really couldn't process what myeloma was, or what I would be going through. I felt informed, and fully trusted my medical team, so I eagerly did what they recommended. Yes, my perspective was always "less is more" and my Drs learned that I easily developed fairly serious reactions to meds at higher doses, so I never went beyond 10mg/15mg of Revlimid, etc. I didn't have much say regarding the stem cell process, but I survived that, and was very fortunate to have remission with maintenance Revlimid for 2 years. Without maintenance, myeloma came back in 2013 and I've been in constant treatment ever since.

I've blown through uncountable rounds of Revlimid Dex (steroids), almost a year of Kyprolis Dex, and now Darzalex, Pomalyst, Dex, since March 2017. My IgA is climbing again, and both my local Dr and my SCT Dr are suggesting changes. First, increase Dex steroids from 20mg weekly to 40mg. IgA still climbed. Next, increase Pomalyst from 2mg/3mg alternating for the 21 day cycle, to 3mg only. From my recent labs for my my SCT appointment last week, my IgA climbed 300 points in 2 weeks. Ugh! So the conversation headed in the direction of what's next, what do I have left as treatment options and clinical trials...

Sorry, Nope, to clinical trials. Those scare me. With my luck, I'd wind up on a trial with the highest dose... and... well... yikes... nope... not there yet... Guess I'll brave up when I have absolutely NO options left. As I see it, I still haven't given Velcade injections a fair try, and then there's Ninlaro, the pill form of Velcade, and there's a variety of "approved" meds still on my menu, that I would brave up to try.

But before I change anything, I want to go back to the 2x monthly or weekly option of Darzalex. My IgA was almost "normal" when I was on the initial Darza Pom protocol. But for whatever medical, cellular, research reason, the protocol was determined to be: Weekly for 8 weeks. Then every other week, (2x per month), for another 8 weeks, then monthly until it fades and we become refractory to it. Well my perspective is, unless Darzalex has been determined to be toxic for extended periods, I just have to see for myself, if going back to 2x per month or weekly could still be my magic elixir. And this is where the "control" or "out of control" issue pushes my buttons... Shouldn't patients have a say so about this? If it worked before, heck, let's try it again. And I'll sign all the waivers necessary, since it's perhaps not a studied, approved protocol, which I can't believe the pharma developer isn't currently researching this option... maybe they are?

Myeloma stole my life, my body, my energy, my options, my choices... I just want want my voice to count...

Ok rant over... I wasn't going to write this much, but oh well... this is where my head's at right now. Very frustrated with myeloma owning me, medical science owning me, medical professionals owning my options, etc. So next week, at my Dr appointment and Darza infusion, this will be the conversation I will have, albeit edited, if my stats have continued to rise even more. Ugh, I hate you so myeloma for stealing my life, and making health, survival, medications, side effects, fatigue, pain, bodily functions, treatments, and being sick, the Focus of My Life!

Here's my stats from last week, and I'll do labs again today for next Tuesday.

I apologize to all my fellow myeloma warriors out there who are having a much worse, and much more difficult time than me. I apologize for whining about my situation, knowing that so many of you are in a much more challenging situation than I am, regarding treatment options, insurance coverage, unsuccessful trials, etc. I apologize to anyone reading this who is in horrible pain, is out of treatment options, or who's circumstances make mine look like a vacation. I apologize to anyone who is on hospice or has a loved one in hospice. I used to think I was a pretty strong person, but myeloma has humbled me, and I'm not so strong and brave afterall. I don't do well in pain, or out of control of my circumstances, and I apologize for ranting like a whimp! May all of you find peace and happiness, and treatment success.

Live happy, live well, and make a difference somewhere, somehow, 

with someone or something as often as you can!

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" !!!!

********************

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!

Just The Facts. A Hole Bunch of Numbers

6.8.18
Hello Everyone. Hope your June is beginning happy!

You know my status from my previous "Holey" posts, so I'll just give you the stats today :))

Darn you IgA, stop climbing!

A little perspective from where I was

just before beginning Darzalex, Pomalyst, Dex

M Protein still not showing...

Wonder if Darza or?
could be suppressing accurate readings?

This range always gives me the head's up

changes are happening... 

My support team I brought with me to 

this appointment. Just wanted other ears :))

So yes, I agreed to Zometa infusions to "strengthen" my swiss cheese bones. I still don't feel great about it, but from what I read, half had problems from it, the other half benefited from it. My Dr suggested every month, I kinda laughed and said a resounding NOPE! Let's go every 3 months, and the first with a very looooooong infusion. If you missed my post with my Pet CT Scan report results, click here. Yes, I base a lot of my decisions on what I discuss in person and read from other patients. Fortunately there are so many legit discussion groups out there now, and all of us patients reporting in about our treatment experiences. Of course medical research and professional medical recommendations are first, but I won't ignore legit patient experiences.

Additionally, my Dr suggested we up the mg of Pomalyst. So I'll be leaving 3mg alternating with 2mg behind, and increasing to 3mg Pom only, for the 21 day monthly cycle. Hello Neutropenia to come. Hello Zarxio Neupogen to the rescue...  

The final new protocol:
Darzalex monthly
Pomalyst 3mg, 21 days on, 7 day break
Dex steroids 40mg per week
Zometa to begin in July

I'm so tired of myeloma. So tired of having to think about all aspects of my health all the time. So tired of having to be concerned with treatment to stay alive, side effects from all the treatments, cooties, and life focused on everything medical. After 8 years battling myeloma, I'm actually forgetting what a  spontaneous "normal life" is. A life of just going, doing, being. Free from all this self focus. I just want to feel good, laugh, play, focus on enjoying life... not living a life trying to avoid death...  

Live happy, live well, and make a difference somewhere, somehow, 

with someone or something as often as you can

So Many Questions

Hello June!
6.4.18

Just a quick update before my regular 8's post :))

Even though I've been whining about how fragile I feel, do you think I've changed my life??  LOL NO!  Still doing animal and ranch chores, doing all my "regular" things, which really isn't that much, but still doing all the things I was doing before... before I found out how Holey and defective I really am! I'm just so aware now that something may suddenly Pop, or Crack, or do whatever a weak, lesiony, holely bone does! ... Yes, so AWARE of my skeleton in ways I never was... but moving forward...

Tomorrow, 6.5.18, I have my monthly Dr appointment and Darzalex infusion. I have a LIST of Questions like none other! Why this, Why that? How come this, How come that? When this, When that? Blah, blah. I will share my questions and answers, and test results on 6.8.18

Just wanted to check in and let you know, for now that is... I've absorbed the shock and awe, and ready for the next myeloma adventure... Ha!... easy to say now, who knows how I'll feel tomorrow, after hearing answers to my questions!!! Thanks for reading and caring as you do :))

Our yard has incredible roses! This is actually ONE rose bush. Amazing how this variety starts out yellow/pink, then evolves to bright orange/pink, then to light pink as they wane. Beautiful fragrance too. One bush, symbolizing, birth, youth, full life, then ... time's up... Such is the story of our lives...

Live happy, live well, and make a difference somewhere, somehow, 

with someone or something as often as you can