I barely slept last night from my sweats, excessive urination, body feeling that mind boggling inner fire rage, numb frostbitten toes and feet, explosive electricity, some minor bone pain, and itching of course, etc. I thought it was going to be a potentially large day so I felt crestfallen at not having enough sleep.
Last night in prep for today’s potential fasting, I stuffed my cake hole (aka mouth) with as much food as possible till about 11pm. I can’t remember eating that late in to the night 😉
To deal with my sleep, I was drugging myself up more and more, but nothing was shutting my brain/body down. I had turned off all devices hours earlier, had tried my usual box breathing (something similar to Pranayama breathing), mind calming techniques, reading, etc.
Perhaps sometime after 3am I drifted off into lalaland, up again at 5am, for more drugs, pee, asleep for a bit and was awake and ready before for the potential 8am arrival of the lab tech. I had a super pasty, dry mouth from all my drugs, but I couldn’t have any water. I was also hungry, even after my binging (like, how was that possible?!). My mouth ulcers were worse, what else is there to say about that, it sucks.
Ciproflaxin 500mg (anti-biotic)
Acyclovir 400mg (anti-viral)
Itraconazole 100mg (anti-fungal)
Fenazopiridina 40mg x 3/day
Filgrastim shot 600 micro units
This is a nonstop daily shot until apherisis and then begins again daily after stem cell transplant until your body is at a basic level of immunity.
No sign of the tech, but at 9:30am I got a call that my PICC line placement won’t be until Monday. They figure that that will be the more likely the day I might have enough stem cells ready to be filtered out. Great, so I’ve got a little bit of a plan now!
If all goes well I’ll have a PICC line placement done, then straight to the apheresis procedure, then onto my third dose of Cyclophosphamide. Long day but we are trying to catch up from being behind.
At 10:30am the tech finally arrived to do my blood draw. I noticed how quickly I bled/bruised after the draw, making me wonder where my platelet levels were at. Fernie already had lemon water, coffee, and a veggie/fruit smoothie ready for when she left. He’s a true gem. I barely finished it all up before Dr. Alex came for my daily Filgrastim shot.
Positive for the day, I got out in the sun to read this afternoon in the parking lot which was lovely 🙂
Late in the afternoon I received my blood count back. It was a bit surprising, even for me. They didn’t bother doing a stem cell count test due to such low results in my counts.
I am already in neutropenia which means I have no neutrophils. Neutrophils make up the majority of our white blood cells, they are key for bacterial UTI infections, along with any other bacteria entering the body. This is why I mentioned yesterday that these scabs on my head, shoulders, chest, etc., must heal up. Even a tiny nick from a razor blade can be the entry point for bacteria that live on our skin’s surface or what we touch. These entry points, including airborne ones, can escalate into infection (and become serious) quickly when in neutropenia.
To sum it up, I have essentially no white blood cells. My platelet levels (which are for blood clotting) are also well below the low level of norm. Apparently, having no immune system after only two rounds of chemo happens to a very small percentage of people undergoing HSCT. The positive is that my red blood cells, while sitting below the low level of norm, they are still high enough to not be of concern at moment.
Here’s a snapshot for those geeky people who want to read the details.
The first arrow indicates total red blood cells.
The second arrow indicates hemoglobin levels.
The third arrow indicates total white blood cells.
The last arrow is obvious, my platelets.
Fernie called Dr. Elias about the situation and given my bladder issues and having no WBC’s, he has doubled my Cipro dose indefinitely. I am going to take 25mg Amitriptyline I brought with me from home as well tonight. It’s a tricyclic antidepressant used at low doses for pain and slows the messaging from the brain to the bladder to help quell excessive urination/irritation/pain. It has a flip side to it, and it can inhibit emptying of the bladder which is bad as we need to keep fluid passing out to deal with a potential UTI. Oh yeah on that note, I won’t have the culture results back until tomorrow (insert extra big eye roll on all this stuff, haha). Two days for urine culture is actually the standard.
Short term plan, I am getting the subclavian PICC line for sure on Monday along with a new blood test/stem cell count test beforehand. I don’t know what will happen until we have those results.
FOR NOW, I just want my symptoms under control, get some sleep and enjoy Super Bowl Sunday. Yesssss, no football FOMO for JBug!
PS: For those who have inquired personally, I have zero doubt that this treatment is the right decision and that it will help me.
PPS: I feel 100% confident that my medical care is top shelf.
PPPS: As I send this out, I am improved today (Sunday) from yesterday 🙂
“Oskee wee wee! Oskee wa wa….go Cats Go!!
Oh …ya ….you are watching American football🏈🏈🏈
I’d rather cheer for you!
Go Jenny Go!
You got this , no problemo!!!
Let’s getter done, get you home and be looking at it in the rear view mirror😜
Awesome Blissful Summer is awaiting you💗
Have fun today! We will be watching as well but don’t get the cool commercials apparently. So relieved you have Fernie their nurturing you.
One day at a time, God is with you, get some rest even if not sleeping .Love Darlene
Jenny, I am so glad you are doing better than yesterday and can watch Super Bowl! I’m glad you were staying positive and providing us with so much information on this important journey that you are on. I read every update and sometimes just have no words at your strength and fortitude. Hoping all goes well tomorrow for the PICC line. You are beautiful and nothing short of amazing. Sending so much love and hugs and positive healing vibes.
Wow! You have been on a journey, but meeting the challenges with courage! I have just caught up with all your blogs Jenny. I’m not very tech savvy, and though I had the link I thought I would automatically be sent the blogs. Uncle Hugh set me straight. Okay, so I’m with you now during this crucial time with all the ups and downs, hoping for the best possible outcome. Love your spirit Jenny…..💘 Auntie Concetta
I’m so glad to hear you are feeling positive about this course of treatment. You deserve something really good. Love you💗
It sure is ALOT to take in for us reading how detailed and critical all of this is. I’m sure you have but be sure your Drs know alk meds you are consuming, meaning the 25mg Amitriptyline (I’m on it too)
I’m happy you enjoyed some sun, I truly find it’s soooo beneficial mentally and emotionally.
Wishing your negative symptoms diminish quickly.
Hugs xx and Happy Valentines Day 💝 😘 💕
Yup, cleared it with Dr. first, thanks xo
Holy! For all the itching, burning, pain & insomnia, you sure wear a brave face & you look absolutely beautiful without hair! Thank you for continuing to post your informative & entertaining posts throughout. I keep thinking the intensity of this procedure will get in the way of your posts, but you keep going! My sweet, beautiful Sister you do not cease to amaze me.
On another note: I don’t imagine so, but could you chew sugar-free (not mint) gum to bring saliva to your mouth? I also hope a rinse is helpful immediately. Lots of good luck with the PICC line tomorrow. I’ll be thinking of you. XOXO