How Life Changes and Challenges Us Beyond the Beyond

2.20.20

Oh how life changes us....

Riding in our local parade, 1983

Currently, as I sit down to write, Jim is struggling to balance and walk back into the house.. he is forgetting how to move, how to walk, how to move his feet... I can see his mind trying to analyse things still... over analyse in a detrimental way... Chris and Jim attempted to go for a little walk outside, but Jim has been very disoriented today, well, this week, well, since last week and the week beyond.... his situation deteriorates and accelerates downhill daily, with a few moments of clarity and orientation. Alzheimers is just so cruel and evil... I hate illness and body sabotage... so incredibly unfair on so many levels...

To Be Continued, as Jim (with Chris) is struggling stand up right now...

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Yes, I was planning to write about so many things. I always have so many topics I want to share with you. I begin several posts before I post, but I rarely post the posts I begin or write in my head....
Here's a part of what I was going to write:
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On my way to my weekly blood tests this past Sunday, I was feeling so "alone". NOT lonely, just so alone in all my challenges and battles. I was thinking about the difference between being Alone and Lonely. I am not at all lonely. I have so many wonderful people in my life. Family, Friends, Caregivers, Neighbors, Acquaintances, Medical staff, even Social Media "friends", etc, surrounding me all the time. I could pick up the phone, and be with anyone, or a number wonderful people in second. I could go places, do things, have all kinds of adventures in a second, (if I only felt well enough!). I am Not Lonely at all and never will be. But the feeling of "aloneness" really hit me the other night. The feeling of being so Alone in all that I am dealing with, confronted with, slammed me in the face as I was driving. I was almost in tears. Tears of recognition. Tears of defeat. Tears of immeasurable sadness about what has happened in my life in the last 10 years, and of recent with Jim.

I pulled into Kaiser for my labs and "pulled myself together" psychologically. I am a master of disguises, always "faking it til I make it". I don't want to be "weepy" wherever I go. I have been, but don't want to be. It's just not me. I am not afraid of my emotions. Not afraid of people knowing me and my feelings. I just don't want to be sad. It's so sweet how I am always greeted personally by the kind, caring check in staff. They know me. I am their "regular Sunday labs gal". Been doing WEEKLY blood tests since Kyprolis, Darzalex, now Velcade! Wow, since Fall 2015! Just something as "small" as this identity recognition warms my heart and boosts my spirits. See Julie, you really are not Alone in this crazy, continuing cancer battle.

I'm also greeted with recognition and smiles by the Phlebotomy team that knows me too well. We chat about our mutual lives. Sometimes there are others in the lab, thankfully often not, as I try to time it when Sunday night Urgent Care is not busy. Our conversation often includes amazement of my ongoing chemo, treatment, incurable cancer situation. Everyone is always incredulous I am as "ok" as I am, look as "good" as I do, and am as "positive" and "upbeat" as I am. That's just me. I don't want to be sad. I don't want to be weepy. I don't want to be dragged down by all this illness awfulness. It's not who I am. My spirits are renewed. Just simple acts of recognition, familiarity, kindness and understanding renew me, and remind me of who I used to be.

I leave the Lab for the Pharmacy just steps away to pick up my Rx for weekly Cytoxan. My phone rings. It's my son Scott and his fiance Ashley, on the way home from a trip. Crazy timing, as they are Right There, on the freeway, almost passing where I am. Unbelievable timing... or is it. They are right there. I let them know where I am. We're all shocked at the "coincidence"... at how location-close we all are. Right there, at the Same time! They were thinking about stopping at In n Out. I hadn't eaten much yet, and was planning to go home eat. They're Right There. I'm Right There. The timing is incredible... We decide to meet up at In n Out. They're amazed I'll go lol. I tell them how sad I had been. How "alone" I had been feeling. The timing was crazy. Meant to Be. How could I not meet up! They're sad I was so sad. I reassured them it had nothing to do with them being gone. It was all about me. All about the overwhelming sadness of the medical insanity in MY life. They still felt bad. My kids always feel so bad and sad for what we are going through. The timing of this was truly amazing. We met, we ate, we laughed, my spirits again were renewed. Timing... wow...

I am alone in MY journey. I am alone within Myself, about myself. Has nothing to do with others. My life is full of amazing, wonderful, loving, caring people. I have so many, so much in my life. I am so lucky on so many levels! Can you believe this timing?!

That was Sunday.
Monday is Dex Steroid day. My day of  fake feeling good. Of not feeling sick or in bone pain. Of things sunshine and renewed spirits. I feel like me again...

The kids and I go out Monday night for my daughter's boyfriend's birthday. We laugh a lot. I'm their crazy, steroided, dexified, hilarious mom. We laugh! I'm feeling like me again. Free of pain. Not nauseated. Free of illness. Free of sadness. Free, for a day... Temporarily, this is me again.
The me before illness took over our lives.

I am not Alone. I am not Lonely. I am a Very Lucky Lady!

Cooties, Germs, and the Bubble Life

2.10.20
Helllllooooo February!

40 mg Steroids, Velcade and Cytoxan chemo Today! Whoohoo!!

What I've learned from learning about my CBCs below!
And this is a fabulous, informative website regarding everything blood tests!
https://labtestsonline.org/tests/complete-blood-count-cbc
https://labtestsonline.org/tests-index

Fun Life update ...

My daughter Alissa and I at a recent College event

that I barely made, due to continually recovering from

being a head cold, respiratory sickie most of Dec and Jan,
along with being a weekly chemo crash sickie.

Finally gave in, and took some "shots" of my fave mint Imodium
and cough suppressant to be able to attend this fun event!

My WBC was 1.7 here!
Yes, I know, I should be wearing a mask... ugh...

Aren't we cute hippies!

So wonderful to see my colleagues, 

but as they say, "you can "never" go back". 

Sadly I feel my beloved career as a college counselor

seems so far away now... 

And it's just so stressful to be in crowds, wondering what 

awful viruses and bacterias are being transferred to me...

We'll see how I do, as who knows the incubation period of all the

cooties floating around during this awful flu season :((

So many bugs are transferred when people think they are well,

but they're in the "silent, no symptoms" incubation period.
I really need to get a "Back Off"-
"I'm an Immune Compromised Cancer Patient on Chemo" mask!
As no one remembers my weekly chemo, or thinks I'm as sick as I am.

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Mondays are always an interesting day for me, with little consistency of how my body will react to steroids and chemos. The one thing I have figured out, is that when my WBCs are super Low, the steroids have a greater impact on how I feel. When my WBCs are a bit Higher, I don't have the extreme "up". But then again, that changes all the time too, so basically Mondays are "bi polar", unpredictable days for me. I often eat like a crazed animal, as everything looks yummy, gotta have it! I still count calories, as I don't want to be a fat steroid cancer girl. Sometimes I am careful, sometimes, just tossing all my nutrition and calorie rules out the window :)) Today, BBQ sounded great, and in light of my low RBCs, Hemoglobin, Platelets, etc, I decided meat was the menu of the day. I don't eat much meat in general, as I feel so bad for animal slaughter and factory farming. Actually, I don't eat much at all on crash days, for days, so I do believe my body sends me signals of what it needs on the days I can eat, so protein and iron it was today! 

I also tossed out my "Neutropenic" cautions of don't eat fresh fruits and veggies, and had a Kale salad with the delish BBQ. If you know of Stonefire in CA, then you know how great their food is. I had BBQ grilled chicken, fire roasted Tri Tip, Kale salad, a bread stick, then couldn't get enough dark chocolate for dessert. Then I had some mini blueberry muffins, hot chocolate, Licorice herb tea, and as I'm writing this, some mini Graham crackers and more Licorice tea. I could just eat the entire contents of my pantry tonight, but I rein myself in. Hopefully I won't be up in several hours with regret and then drinking the pretty pink Pepto Bismal lol.

Tuesdays I've learned to eat light, as boy oh boy, does the intestinal crash hit me mid to later in the afternoon. Again, when my WBCs are loooowwwww, I have more and "severe" side effects. Nausea, diarrhea, achy body all over, headaches, extreme blah, yucky, etc. Sometimes hits me early, sometimes delayed. When my WBCs are higher, it's more of a delayed reaction and not as extreme. 2 weeks ago Tuesday Jan 28, when I was just coming out of my awful fever head cold, (but still did chemo on Monday Jan 27), I met my dad at Brent's deli after my Dr appt. Didn't really eat heavy- Lox, bagel, blintzes, dill pickles. But OMG did I "die" later, around 12am with EXTREME, sudden, cleansing diarrhea! OMG haven't had a severe reaction like that in a long time. Like awful, awful... like turn on the faucet for hours and hours. Finally got to bed around 2:30, 3:00am, then still a bit more the next day. Well my WBC was 1.7, so I've learned that's when my body really over reacts to side effects. Low = Caution, it's gonna be a rough crash. Higher = watch out, you're sick, or getting sick, and your WBC army is trying to fight for you...

Dec, Jan, Feb, my WBCs, ANC have been jumping all over the place. In the 1's one week. In the 4's the next. Then 3's, then 2's, then up down, up down, up down. No consistency since being so sick for so long. I have figured out that when I'm getting and fighting a bug, my WBCs jump higher. Like High for me. Fake High lol. Like in the 3's and 4's. That's the low end of  "normal" for a "normal" person. I am always ABNORMALLY low regarding my WBCs. So that's always a red flag for me. My nurses laugh at me, and tell me so many cancer patients would "kill" to have my labs, as my organ stats are always "good"- liver, kidney, creatinine function, all normal ranges. But ugh, those WBC immune cells are just so challenged for me all the time, but I am fortunate they rally for me, and do rise when I'm a sickie. So yes, I've been all over the blood lab map Dec, Jan, Feb!! I'm still coughing and hacking a bit, but nothing compared to weeks prior. Thankfully I didn't fracture a rib or throw my back out, or tweek my neck horribly with all these bugs I've had. I did have the awful headaches for weeks and weeks, but that was probably all the congestion in my head, but I really didn't have the awful, can't breathe sinus clogging. Crazy how steroids mask symptoms. Who does weekly chemo when sick! I do! Because I am just so scared to NOT do chemo, as my myeloma is so aggressive and is looking for any window of opportunity to take over. Grrrrr...

Well it's getting late, and the steroids still want to party, but I have to try to force sleep on myself. Plus if my Alz hubby wakes up and doesn't see me in our room, he'll try to get up, and that's a DRAMA I don't want to deal with... 

So in summary, life is great and horrible all at the same time. 

We are so lucky, blessed, fortunate in so many ways, yet so cursed in so many ways.

I fight forward everyday for my family and animals and friends. I wonder how I would handle all this if I was a single, alone, person, with no one in my life. Seems like EVERYONE needs me, and I have to fight to stay alive for everyone else. I do fight to stay alive for myself for the principle of it. I JUST CAN'T LET MYELOMA WIN! I've come this far, and am just incredulous that I've survived 10 years, and have been doing intense chemo for 10 years, so I'll warrior on, and see what each day, week, month, year brings! 

I fight forward for all these goofballs:

For all my Horses

For all my adorable, crazy little rescue doggies

For my family that needs me

For my big rescue doggie Abbie, who is not well herself

For my amazing caregivers

Nathalie and Chris

And for everyone that cares about me :))

Thank you for checking in, reading, and caring about my life as you do!

If you need a "pick me up", 

WATCH THIS!! :))