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.
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!