OK, here’s my update, albeit two days behind and late in the day posting. I had to wait today for pain control to kick in for a post-spinal tap like crushing headache that hit me this morning.
Unfortunately, I’m not sleeping much as a side effect of the Filgrastim, but the nightmarish ‘sleeps’ I had (for what seemed like forever) seem to be a thing of the past. They were h***.
Ciproflaxin 500mg (anti-biotic) x 2/day
Acyclovir 400mg (anti-viral)
Itraconazole 100mg (anti-fungal)
Fenazopiridina 40mg x 3/day (up 1x/day for bladder pain)
Filgrastim shot: 300 micro units
The chemist came as planned first thing in the morning for my blood prick. See the (graphic) video below, but not if you’re squeamish.
Sometime around noon Dr. Andrés came with Dr. Alex to discuss my blood counts from the morning and check how I’m doing. As expected, my WBC is basically nil (.12, norm range 4.5-11), my platelets are down slightly (42, norm range 150-450) as well.
He notated my RBC level was up from Friday (3.13, norm range 4-4.9), but likely it will decrease by Wednesday. As such, I need to be aware of any signs of lacking hemaglobin such as dizziness, laboured breathing, severe fatigue, etc.. He also wanted us to contact him immediately should my temperature hit even the high level of normal (37.5C). Fernie and I locked eyes instantly in acknowledgment. They aren’t taking any chances.
He said they were all pleased with my status thus far, even though slow. I am in neutropenia as they say, in limbo, waiting for my counts to stabilize, then recover.
They are pretty strict here on what one can and cannot do (food, personal hygiene, daily linen change, etc.). To me it’s pretty standard stuff as I’m trained after being through three rounds of Alemtuzumab.
A quick note on my diet here, the bulk of my intake is fat (olive oil and butter), protein (organic eggs, organic chicken, cashews, almonds) and then carbs. I am consuming various berries, papaya, apples, lemon, pineapple (as good as Maui ones!), roasted onions, garlic, zucchini, broccoli, romaine lettuce, kale, celery, green tomatoes, avocado, potatoes, steel cut oats, brown rice, etc. Although I’m no saint: I’m addicted to my little gummies/dark chocolate/tortilla chips (haha!).
Organic food is plentiful at the local HEB. Fresh vegetables and fruit have to be disinfected before consuming which is rather a labour of love. Other stuff is cooked on the stovetop or oven, not microwaved, to ensure bacteria is removed.
People have queried me about how I’m handling the isolation while neutropenic. It is not dissimilar to my every day existence with MS….
I have a small amount of allowable outside time so Fernie takes me down to the parking lot where I can sit in my wheelchair under the palm tree or in the sun (depending on the heat) and read. Even poor air quality can trigger an infection (aerosol) apparently, so I must double mask when I’m outside (blah). Being outside in the sun is precious to me and is generally the highlight of my day, plus it’s nicer for the cleaners to have the apartment empty while they work.
As for my new daily symptoms. My bladder has become really angry again and is causing me 24/7 pain and burning. I have these uncomfortable heart palpitations, inability to sleep much even though I need it, and a brewing headache. All of this are side effects from the Filgrastim. Spasticity is still causing me grief, yet not as severe as post Cy.
On a positive note, I have had most of my rashes/scabs heal up and my insane itching is gone. Apparently my head looks immensely better.
Overall, I’m doing great physically, considering.
Emotionally, I’ll write more on that with the next post as this one’s long enough….it’s been tough.
Having flashbacks reading some of your posts. I guess everyone ends up being neuropenic?! I was. I was impressed that you seem to be using the bathroom yourself? I asked Cordelia what happened with me and I had a catheter for the first few days because I was in so much pain and couldn’t really walk. They took it out because of fear of infection eventually and I am sure I needed assistance in the bathroom through the whole hospitalization. You have gone outside?! I went outside when I left Northwestern on day 9. 🙂 And you seem to be eating well. when you can. that is awesome!
I am totally remembering all the cleaning – even when I went home to NY to my moms she cleaned everything, we avoided crowds and followed the list to a t. I don’t think i could eat tomatoes for several months and all kinds of other rules. You are right in the middle of it!!
My heart and thoughts are with you as you continue your fight! Sending you the biggest virtual hugs. 🌹❤️
You’re in my thoughts every day and I look forward to your daily posts.
You are an inspiration.
I really really hope you feel better soon. Love you my friend. xxxx
Thinking of you and sending love, hugs and positive healing vibes. I’m glad the pain from your headache is better and you are doing well physically. Hopefully you have help with the emotional side too.
I love you ❤️
Oh sweetie – you have always sought that sunbeam to bask in. Just like our dogs:) I know what it does for you:) Love….