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.