Blood Test Results and Chemo Lab Aventures

Hello 2.13.18

I’m sneaking in an additional post, with my updated Labs. Thanks for caring and asking to hear my results before my next predictable, “on the 8’s post :))

Well as you saw from my previous 2.8.18 post, my WBCs were quite low at 1.9 (normal = 4 – 11), and my ANC at .8 (normal = 1.8 – 7.7), which means, thanks to Pomalyst’s power, I’m Neutropenic again. I’m quite used to this now, as Pom seems to do this to me almost monthly now. Early last year, we lowered the dosage to alternating 3mg and 2mg for the 21 day cycle. 4mg is the highest Pom dose. As I write this, I smile at how much a cancer patient gets used to, and adapts to. In the “normal, healthy” world all this is would be so shocking and debilitating. But I’ve learned to take it all in stride, and know “I can’t control the things I can’t control”… so I move forward and deal with it the best I can. I don’t think I’m shocked by much anymore, regarding my situation. I read so much about myeloma, and understand what myeloma treatments can do to us. I hear so many stories about what other patients are dealing with, and what their complications are, that I am “grateful” for my type of challenges. Sounds crazy, but I’ll take the many complications from my extreme compromised immune system over the horrendous bone issues so many myeloma patients suffer from. It’s all in what we individually get used to, and learn to tolerate.

I used to fear self administering Neupogen Zarxio injections. I just didn’t think I could do it. I wrote a whiny post about it last spring. But I’ve toughened up, and now it’s no big deal, and I actually look forward to these amazing immune system, white blood cell (WBC) boosting shoots for a few days! They’re like magic, and I feel better, stronger. The debilitating fatigue cloud is lifted. If just for a while though, as I would have to do these regularly to maintain WBC “euphoria” lol.

Feb 6
0.80 x1000/mcL         
Normal Range = 1.80 – 7.70 x1000/mcL
Feb 9
2.97 x1000/mcL
Normal Range = 1.80 – 7.70 x1000/mc
After 3 days of Zarxio injections, just look at this boost! 

WBC’s went from a low of 1.9 to a high (for me) of  5.2 !!

With the Winter Olympics going on, I can’t even imagine how high and normal the athletes CBC’s and other body functions are, to compete at the extreme skill level they do! It’s truly amazing what a fit, healthy body can accomplish. I used to ski with my high school ski team, and I later shared my love for winter sports with my kids. They grew up skiing, and then snowboarding, as we would take regular family trips to the snow. Oh, how I miss this. Can’t remember the last time I skied, and watching the Olympics now, sure makes me miss being able to do that. Ok, put that on the Bucket List!

There’s dysfunction with the mobile version of Kaiser’s lab results right now, so I wasn’t able to capture a cool screen shot, as I previously have. So here’s the copy/paste of my current IgA status, which shows Myeloma’s on the move in the wrong direction again, trying to dominate this wonderful triplet cocktail of Darzalex, Pomalyst, Dex steroids I’ve been tolerating for almost an entire year now! Wow, it will be a exactly year on my next “8” post, 2.28.18, that I began Darzalex.

M – Feb 6 2018
70 – 400 MG/DL
700 – 1,600 MG/DL

So as you can see, my IgA is almost 2 times the high end of normal. (I cut the IgM stats out, as they corrupted the chart layout.) I’m “sad” myeloma’s on the upward climb again, but I’m certainly not “panicked”, as I’ve been down, rather “up”, this road so many times, and have seen my IgA as high as 5760 at diagnosis, Dec 30, 2009, and then in the 4000’s almost every year since coming out of remission in 2013. I’ve just gotten used to so much in the 8 years living with, battling myeloma. Here’s where I was just before beginning Darzalex and Pomalyst. Just happened to see this recently, in my old photos:

I confessed to my Dr yesterday that I did reduce my weekly Dex steroids from the recommended 20mg per week to 12mg per week twice this past cycle. I’m concerned that I’ve been on a steady diet of Dexamethasone since mid 2013 now! I worry about all the side effects, and was hoping my IgA would hold steady on a lower Dex dose, but I’m guessing not :((  So this month I will be consistent and do the 20mg weekly, no matter what “quality of life” events I want to partake in…  Crazy to live life this way, always planning around when I’ll feel lousy, always having to allow for the medication crash.

Speaking of SIDE EFFECTS, yesterday was a particularly hilarious day in the chemo lab for me. Hilarious and chemo lab are an ironic paradox in the same sentence, but here’s what happened to me. I took my 20mg Dex steroids around 8am for my scheduled 10:30am Darzalex infusion. For some reason, they hit particularly :silly and fun”, “warm and happy”, just as I arrived to the chemo lab. I know I have written about this previously, but I just can’t get over how unpredictable my body’s reactions are to these meds I must take to stay alive. Sometimes Dex hits as a less dramatic overall boost, sometimes with a manic bang!

Being so close to Valentine’s Day, I brought bags of Dove chocolate for all the Oncology staff (my Dr, Nurses, chemo Pharmacists). I do thank you treats often for this wonderful team, as I want them to constantly know HOW MUCH I APPRECIATE THEIR DEDICATED CARE and PROFESSIONALISM!
I’m naturally an animated, effervescent, communicative person, but Dex just revves that up to an exaggerated level. I do (try) to keep myself in check. As you can imagine, the chemo lab isn’t the “happiest place” for most people, and there’s no knowing the psychological place most patients are in, when I come bouncing in, silly and animated. I really do make the effort to de-energize myself, and be courteous and “appropriate”. I have had many patients ask what meds I’m on, that make me feel so ok, as they want this “happy blast of energy” too.

Mondays, sweet Karen the Volunteer is there, and we’ve had a lovely friendship for years now. Tragically she lost her husband to stupid cancer a few years ago, and is so gracious to give her heart and time to the patients and staff in the chemo lab. We always have stories to share, and other “regular patients” often join our conversations. 

After I settled in, Karen brought over a lovely patient (named Karen also), to visit with us, that I had met several times before, so our little area quickly became a chatty party. In the bed next to me, was a younger patient, who soon joined in on the conversations. I mention all this, as here we are, all hooked up to IV’s, serious chemo meds coursing through our veins, but it felt like gals just having fun conversations in an “ordinary” circumstance. The irony is ridiculous. Chem lab, fun? What an oxymoron for sure! Soon my nurse comes to begin the “premed” process for me, and rather than a drip bag of Benadryl, I’m prescribed the “syringe push” of  50mg of Benadryl. Since Darzalex is a long, slow infusion process, the point is get the premeds going, so we can get thru Darzalex before closing time.

Soon, actually rather quickly, the Benadryl begins to affect me. Putting me into mental sloooooooow mooooo! I feel the Benadryl taking over my being…  down I goooo… my functionality slows, but my thoughts still race. My brain and mouth no longer connect effectively lol! I have a difficult time expressing my thoughts. It’s really quite hilarious. I mention it to the ladies, laughing about my disconnectedness. I’m slurring words, trying to finish whatever story I was attempting to tell, but it’s all muddled, and confused. The conversation became absurd, as I tied unconnected stories together. What a mess. We all laugh. I try to carry on, but finally, I laugh and tell them, I’m too fuzzy and muddled. Everyone says just give in and sleep, but I’ve never been one to sleep in a public “fish bowl” like that. But I do eventually shut up, and laugh at my silliness.

I’m sure these sensations could be very disconcerting to many, but I am curious and fascinated with everything I go through. Never before myeloma, did I have medical issues, or take strong meds, so I continue to find the personal “entertainment value” of these wacky experiences so very interesting. But trust me, if I was nauseated or couldn’t breathe, or in unbearable pain, or was having serious reactions, I would not be finding any of this humorous! I’m familiar enough with this particular chemo process now to know what’s coming my way, so I can be humored how the HIGH of steroids collides with the DOWN of Benadryl. I can only imagine what is going on inside me, bio-chemically. Boom, poof, crash, bang… I picture chemical boxing gloves inside of me lol. One side fighting to be hyper and manic, the other side fighting to chill and relax. It’s really quite an interesting experience to go from one extreme to the next, all knowing it’s part of the protocol to pummel cancer cells.

And that was my day. Pain free. Hyper-manic. Dulled and calm. Kooky and silly. Sleepy, but awake. Social, but exhausted. Accepting, yet incredulous. Observing my life and others. Always wondering why, how come. How did all this happen to me and the others. It’s about 4:30 by now. My Darzalez infusion is finally done. I like to complete the entire hydration bag after the Darzalex, to cleanse my veins, then time to remove my hand IV. Yay, I’m free again. I thank my kind nurse for caring for me all day. I’m readying to leave when I see, our male nurse, giving a young woman a “tour” of the chemo lab. I’m thinking she’s probably getting a tour with an “older” family member. Then she looks over at me, and questioningly calls my name. I look up surprised. She looks familiar, but I can’t place her immediately. It’s out of context. Perhaps one of my past students, here with a parent? I say hello, and “sorry, who are you?”, feeling bad I had to ask. I blame it on all the meds, fogging my brain.

Omg! I suddenly connect who she is. One of my daughter’s good friends since kindergarten! We both quietly “scream” in excitement to see each other. She comes over to my bed to chat. I ask her who she’s here with for the tour. She tells me it’s for her… I’m incredulous. I’m shocked. We exchange WTF exclamations over and over. She can’t believe her diagnosis either. Happened so fast, just in the last two weeks. We’re in our own world, as the chemo lab is closing. I suggest we go out to the waiting area to talk. I want to hear her whole story. My heart is breaking for her. She’s too young, too beautiful, too happy. Just recently married, I think 2 years ago. Life is happy for her. Purring along. Now this. I’m shocked. We allow ourselves to cuss, WTF, how come, why, makes no sense. We want to cry, but we’re also laughing, as we’re so happy to see each other. So much to share, so much to catch up on. It’s now after 5pm. Most of the nursing staff has left, but as a few walk out, they see us, and I briefly share her story, and our 25 year history. Incredible. Crazy. So not fair! How does cancer happen? My heart aches for her, and how her life has changed in an instant. A biopsy. A phone call. Life will never be what is was before. We discuss this. But, she’ll be ok. She’s young and strong. Positive and optimistic. She has the great care I do with Kaiser. And has a great support network. Me included. But still… WTF? Just another bipolar day in the chemo lab.

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