Go Steroids, Velcade, Cytoxan! Some Good News for a Change

Hello 2.19.19

I refer to my crazy Mondays now as "Medication Madness Monday", so this post comes a day after my weekly cocktail of 40mg of Dex steroids, Velcade shot, and 8 Cytoxan-Cyclophosphamide pills, and my February monthly status Dr appointment. I began this post around midnight last night, still hyped up and jolly on steroids, and planned to continue a lively, positive, good news update later today, but sadly today went from what should have been a quick Dr appt to an all day traffic nightmare...

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Yes, the day, and this post update, is a wash, as it became a caregiving day for my hubby with Dr appts, etc, for him. We got caught up in a horrible freeway backup, accident, fatality situation, that caused a nightmare traffic jam on our local freeways and local streets. After inching along for hours, I finally decided to make a U turn (like so many others), as our route was going nowhere at 2 miles an hour... I was parched, hungry and felt lousier and lousier by the moment, as Tuesday begins my Dex and overall medication crash. Luckily, earlier, I went with my myeloma intuition, and didn't eat or drink anything before leaving the house- (not healthy, but necessary). As I've mentioned so many times here, and told so many stories of "near misses", I do not eat, or drink before I go anywhere, so there's little chance of a "biological emergency" on the freeway. And wow, was today a perfect example of why I do that! As we sat in sloth style crawling traffic, I couldn't help but think of all the potential emergencies people could be having in their cars, stuck on the freeway and side streets. Just awful. Been there, done that with way too many "volcanic biological emergencies", over the 9 years of myeloma treatment. I never want to experience an angry, desperate GI system while stuck in a car ever again!

So after crawling along getting no where, breathing car exhaust fumes, and fearing I might run out of gas, I realized we could be caught in this nightmare for hours. Thankfully, that U turn brought me by a gas station. While there, I also considered using the restroom, but really didn't want to, as I avoid public germy places as much as I can. Ironically, (and I was glad), it was "out of service". Clear message, right, to Stay out! But also not good to hold my pee, as my Dr told me Cytoxan-Cyclophosphamide is hard on the bladder and kidneys.... so here I am not hydrating and not peeing. Just great for my poor body on day 2 of treatment medications, when they're revving up the most!

Meanwhile the traffic was only getting worse, as the late afternoon, evening commute had begun, so I just gave up trying to get home, and decided we'd go out to eat while the traffic chaos died down. The irony was we were right across the street from where we had our wedding reception, a zillion years ago, so that became our dinner destination. Ah, this life and all it's crazy twists and turns! So here I am trying to update this post at 9:30pm, going on 10pm going on 11pm, going on 12am... exhausted mentally and physically, so this will have to suffice for my 2.19.19 update, which was going to be newsy and funny. But I'm just too beat up to upload screenshots of my recent labs, and write in detail about my news. Crazy what a difference a day makes with Dex! Yesterday I was so peppy and energized and funny... today... drained, frustrated, and not so funny and fun anymore, as the sad circumstances of my husband's situation, and the impact on him, me, and us as a couple weighs heavy on me today...

Here are the headlines of what I had planned to show and tell you:

IGA = 2000 in Nov, now 1230 (normal 70-400)
M Protein = 2.19 in Nov, now 1.01 (normal = 0)
Beta2Microgloblin = 2.9 in Sept, now 2.1 (normal below 1.8)
Light Chains = subnormal
CBCs not bad, Not Neutropenic!
Body organ stats good considering 9 years of chemo battering!- this amazes me!

Also wanted to mention a Weird change of my Velcade shot today. Normally I receive 1 injection for 1.59mg/ml, but today my dose came as 2 shots. At first I was alarmed and thought I was getting a double dose, but the nurse checked and rechecked, and we confirmed that it was the same dose, but the pharmacy sent it as 2 injections, or 2 needle sticks. Hmmmm, never had this offered like this before. We had another nurse come over for consultation too, and everyone said it can be done either way. Turns out the concern is injecting too much SubQ into one area. So it is often divided up into 2 spots. For those of you familiar with Velcade, what is your experience with injections?

Up to now, I have the injections in my lower stomach, or my "jelly-belly" as I affectionately call that area :)) We alternate L and R sides each week, but it has only been one injection stick, not 2. The nurses often assume in the arm, but I have never done it there. So far, I do not have any new side effects from 2 sticks, perhaps a little less irritation, as was suggested by the nurses. Just checked. Yep, 2 red spots, not 1. But I don't have any itching or pain... yet... When I began Velcade, some injection sites actually turned to bruises. Some super itchy. Some painful. So far, most importantly, very little Neuropathy! Thank goodness for that gift!

Life continues to be a crazy roller coaster with my hubby's Alzheimer's decline... decisions, decisions... ugh... so tragic on all levels...

Rain, Rain, Rain = Muck, Muck, Muck here... cold, cold, cold... done with Winter, thank you!

And I can't help thinking... What's next after this triplet, when I become refractory to it... when myeloma outsmarts the chemicals trying to outsmart myeloma... next up clinical trials??? Clinical Trials Scare Me... as you know, I like some semblance of control over dosage, and you can't chose your dose in Trials! Well, one day at a time, one challenge at a time, one crazy life adventure at a time. Cheers to surviving all I have, on so many levels, and you to, for all you have dealt with in your lives. So many challenges, on so many levels for everyone! But again, I'm always always so very very grateful for my amazing Insurance, my family, friends, and all the good that has been in my life!

Here's a walk, rather a read, down memory lane of my posts this time (February), of previous years:

https://juliesmyelomamoments.blogspot.com/2018/02/myeloma-on-move.html

https://juliesmyelomamoments.blogspot.com/2017/02/stop-this-start-that-moving-on.html

https://juliesmyelomamoments.blogspot.com/2016/02/sick-so-sick-big-fever-stupid-immune.html

https://juliesmyelomamoments.blogspot.com/2015/02/the-new-new-new-new-new-unwanted-normal.html

https://juliesmyelomamoments.blogspot.com/2014/02/low-dose-treatment-reality-check.html

https://juliesmyelomamoments.blogspot.com/2013/02/my-life-in-ocd-antibacterialized-bubble.html

https://juliesmyelomamoments.blogspot.com/2012/02/remission-back-in-saddle-again.html

https://juliesmyelomamoments.blogspot.com/2011/02/no-new-news-is-good-news.html

Such an evolution of self, and this blog! Yet, how much the same things are!

And I Thought Life Would Get Simpler...

Hello February
2.9.19

There's been a lot of rain in our area... for our area. But as I write, I look out my window and see clean blue sky, with bright white puffy clouds. The air is cool. Cold to all of us who aren't used to "real cold". The rain has washed the earth. The trees are green and clean. The tangerines, shine bright orange. The lemons, bright yellow. There's a soft breeze in the old oaks, and the critters are warming in the sun. The usually dry creek bed behind us, is flowing now. I can hear that soothing sound of water trickling, pebbles clicking, as it flows forward, down the creek. I remind myself of all the things I am so lucky to be surrounded by, of the good fortune I have, from our hard work. I can buy hay for the horses, food for all the other critters. Insurance for us, and all the household and life necessities for us.

But I'm overwhelmed with sadness, disappointments, frustrations, from too many needs on me. I am overwhelmed by what illness has done to me and my husband. I am overwhelmed with all that I am "obliged" to do, the physical care, for so many lives. I am sad for the continual realization of all the things I will "never" be able to do now, or places I will "never" be able to go. We are very homebound with all our medical challenges... it wasn't supposed to be like this I tell myself. We worked hard, we planned, we assumed. I feel cheated, betrayed, my life stolen from me. I have angry moments. I was never an angry person. I cry, and I rarely used to cry. I work hard to "control" and diffuse my emotions. This counselor "self counsels" all the time now. Optimism is now pragmatism. There are good times, good moments, so much good, but I "know" mostly "bad" is coming our way. It comes in small doses everyday now. It's just the nature of our illnesses. I am not negative, I am realistic, and I'm so disappointed, sad, frustrated, and overwhelmed. I never expected to be, as I am now...

Life is an evolution, a continual learning curve. Whether we live life on a deeper psychological, introspective level, or we just let life happen to us, our daily experiences shape who we are, and how we move forward. No matter our life circumstances, we all have challenges, goals, expectations. But illness complicates everything. Physical disabilities complicate everything on every level. All this steals life, from once healthy, active, happy people.

My focus in life has always been my family, career, animals. All the other things were frosting and sprinkles on our cupcakes. My career was stolen by Myeloma, so that's gone. The animals are getting older, and having health challenges themselves. Sadly, so sadly, their care has become a chore for me, rather than fun, rewarding and inspiring, as it used to be. At one point in my life, I considered a career in Veterinary medicine. But after a while, I knew my calling was "helping others" on a broader, psychological level. So I turned my love for helping animals into a hobby, a very small scale personal rescuing mission. At one time, we had a mini zoo here with more species than I can recall... well maybe I should write them all out... horses, ponies, dogs, cats, turtles, snakes, tortoise, iguanas, chickens, ducks, geese, peacock, goats, sheep, birds, fish. Some critters were because my kids "begged" for them as birthday gifts. Some were given to us when someone no longer wanted them. Some adopted us. Most we adopted, rescued. All were loved, and we committed to their care for the entirety of their lives.

But now, with the minimal menagerie we have left... 4 horses, 1 pony, 1 big dog, 3 littles, 1 tortoise, 1 turtle, 1 cat, 3 birds, 6 chickens, I am often overwhelmed with their care, especially when it's muddy and rainy, cold, or on my medication crash days, when I don't feel well. Yes, I do have help, wonderful help, but as we know, the challenges and emergencies happen when the "help" is gone, or unavailable. Here's what's going on now that is just wearing me down, dragging me down, causing me to question everything I am, and will be, knowing what's coming down the road medically for us.

See, for most all of our lives, Jim did so much while I was at work, and the kids at school. As a couple, we had a wonderful "division of labor" with the household, ranch chores, animal chores, etc. He was our Mr Mom, Mechanic, Ranch Manager, Master Pooper Scooper, Super Shopper, Cleaner, Organizer, Hoser, Blower, Raker, Green Thumb Landscaper, etc. Jim loved hard work. He always wanted to be a Farmer or a Rancher, and got to do all this here, on a very small scale, after his retirement from the car business. But Alzheimers has stolen all of this from him. Literally all of it. He has moments of recognition of who he used to be, and if I'm gone for blood tests, or short errands, there have been times, I've found him outside, trying to do chores. You may be thinking, good for him! He should try to do, and be who he used to be. But it's more complicated than that. He has mobility issues from various injuries, and an injury to his leg from a blood clot, etc. We worry that if he tripped and fell... well... that could be disastrous outside. Or imagine him falling in the horse arena, trying to scoop poop. This image can be comical, as picture the horses gathered around him, wondering what the heck he's doing on the ground. But it could also be a serious crisis...

Amazing, yet not safe anymore

especially in the muck and mud

So my life has become all about poop. Cleaning up poop, when I least feel like it. Doing constant poop chores as a cancer patient is not exactly what my doctors would recommend. But with all the animals, there's of course, a lot of poop. Yes, everyone poops, animals and humans. But I'm now Master Pooper Scooper to everyone and everything, everyday. Not to mention, on my medication crash days, there are moments I'm not sure I'll make it to my bathroom for me, or I'm spending way too much time there, on "cleansing days". So by the time I take care of my personal situation, here comes another poop situation needing attention. With the rain, the little doggies are having accidents in the house, especially since Jim doesn't let them outside properly anymore, or let's them in too soon, after I've put them out. I go through bottles and bottles of cleaning supplies, cleaning their messes. Then by the time I get that cleaned up, Jim may have had a "miss" in one of our bathrooms. Then recently our kitty Luci, has had GI issues, with disastrous explosive diarrhea, that gets on the wall and the dryer, and worse yet, she accidentally steps in it, leaving poopy tracks on the tile, and on her... All this is daily, never ending, and often surprising me, when I least feel like being a poop janitor. And that's just the inside. By the time I get all this cleaned up, it's time for the outside poop duties. 

And all this, for an immune compromised Myeloma patient on chemo, who should not be breathing, handling all this "toxic" stuff, not to mention, bending over so much, with all my lesions, holes and plasmacytoma tumors. As I say to our kids, the "breaking" point will be, if I break something... and the comic irony will be that it will probably happen when I'm cleaning up poop! 

I really try to keep my sense of humor about it all, but sometimes, I just can't take it anymore. I have emotional breakdowns. But I don't blame the critters or Jim, or me. This is a situation where we're all "innocent victims" of our circumstances. I remind myself, "it's not their fault". They can't help it. When we acquired all the animals, we weren't encumbered with our illnesses. Sickness changes everything. Being healthy and well is "easy". What goes along with health and mobility, is easy. What goes along with bad health and sickness, is cumulative, disabling, overwhelming.

It's taken me a while to write this post, as I've had clean up and caregiving duties while writing, and I really wasn't planning to write this topic again. I sure don't want this blog to become a whiny, poor me story. For those of you that read my personal facebook posts, I'm sure you notice the difference between these posts and those. My reflections on my life are so different on my Dex Steroid days, which I call "Monday Medication Madness Day". I take 40mg Dex, then go for my weekly Velcade shot, then later take 8 Cytoxan pills at 50mg each. And I do find humor and awe in all of that! Most cancer patients HATE steroids, but for me, they clear the fog, give me fake fun temporary energy, boost my spirits, and bring back my natural optimism, that all this complicated illness ridiculousness has stolen from me.

I live one day at a time, and try to take each challenge on as it hits me. It's ironic, that my complicated life doesn't leave room for me being a "typical cancer patient"... perhaps that's why I've beat Myeloma for 9 years now.... 

Perhaps one day, my immune system will let me do as Kenny Chesney sings: 

      

Hoping you're well, happy, and processing your life and issues in a positive way! And if you're a Myeloma warrior, may your treatments be bearable and successful!

Jack and Abbie