HSCT Journals

February 11th (Friday)

by | Feb 12, 2022 | Blog Posts, HSCT Journals | 5 comments

Things are ramping up in several directions right now. OK, to start I woke up with a decent sized mouth ulcer and feel a few others brewing. This is a side effect of the Cyclophosphamide. My whole mouth is burning so my spicy salsa eating days may have to be put on hold till I recover 😉

That aside, I know it can be a lot worse, but my sleeping is becoming quite troublesome. Between the bladder irritation/urgency, lower back pain, night sweats and overall the raging body fire and inner body electricity (pain), the sleep meds aren’t overriding it all to put me to sleep. I’m even upping the dosage of them, and through the night, and it’s not helping.

To rule out a UTI (bladder infection) I had to provide a sample for a culture. It can a day or two for the results in the meantime I’m already on Cipro as a preventative for UTI and have the Fenazopiridina.

8am meds:

Dexamethasone 4mg
Pantoprazole 40mg
Ciproflaxin 500mg (anti-biotic)
Acyclovir 400mg (anti-viral)
Itraconazole 100mg (anti-fungal)
Fenazopiridina 40mg x 3/day

The next issue is that I have quite a few rather bloody scabs from the rashes/severe itching I have on my scalp, chest, upper navel and a little on my back.

This crazy itchiness is of one my 24/7 MS symptoms, and I take Benadryl daily as a standard (50-100mg). Some areas drive me insane and during relapses it goes through the roof. I’ve been dealing with a mild relapse of this origin since January and had self-medicated 800mg prednisone over 3 days at the time. It went away immediately, but began to slither out again after five days and has been steadily worsening. The areas are my chest, upper navel, upper back, ears and my scalp, sometimes legs and toes. I get a rash, then can’t help myself (insert huge eye roll), itch with a vengeance and soon it’s a bit of a bloody mess. Since I have no hair now it was quite evident exactly how much is on my scalp. Yikes.

After Dr. Alex gave me my Filgrastim shot, he checked out all my scabs, mouth ulcer, took pics and sent them off to Dr. Elias for instructions. He’s increased the Dexamethasone to 4mg x 3 days to help with itch, hope the rash subsides and things heal ASAP. I’ll explain tomorrow why this is key.

Tomorrow the chemist comes supposedly at 8am for a CBC (complete blood count) and to test to see if I have enough stem cells yet. I am not sure, but may I go in tomorrow (Saturday) to have the PICC line that is surgically placed into a vein directly to the heart. This is because for the aphereris (stem cell collection), they need a very wide catheter and my veins suck for anything other than a 22 gauge catheter or smaller.

Admittedly, I felt apathetic today. I guess being cognizant of the cracks I’m seeing in my body breaking down, reminds me of the drill so to speak, of the fallout of chemo. Adding to it all is knowing that things will be getting a lot tougher very soon, so I need to get on top of my emotional self to face the rest. I’m OK, just being transparent.

I’m feeling so grateful that I don’t feel like puking and hope that my two days of chemo yet to complete, don’t ruin my Super Bowl Sunday plans. I have a bit of FOMO if I don’t watch it plus I love the commercials and can’t wait for the Half Time Show. Unfortunately, we don’t know when the chemo is because the apheresis has to happen first, and that depends on my stemmie count. *Big sigh*

The line up for the Academy Awards came out the other day and saw King Richard was on it. I watched it today. It is with Will Smith and is the Venus and Serena Williams story. I thought it was excellent.

Fernie told me I can’t eat or drink past midnight tonight for the chemist, plus I have to hold off on food till I know if I go in for the PICC line which may be as late as 2pm. Does the surgeon not know that Jenny Angus eats most of her daily food before 3pm?! 😉

Then he looked at me seriously and said you’re not going to like this, and it’s non negotiable (I’m thinking OMG he’s going to take away my secret candies!), but instead he says he shares that alongside me he too will be fasting tomorrow. I tried a few jokes to see if he’d change his mind because as sweet as that is I want him to be feeling good. I guess my negotiation skills need sharpening, as the confirmation was still he will be starving beside me.

Here’s a very basic description of a PICC line and placement done by surgeon under anaesthesia for those who don’t understand. I’ll try to beg one of the nurses to video it being done on me 🙂

https://www.mayoclinic.org/diseases-conditions/cancer/multimedia/picc-line-placement/vid-20084657

5 Comments

  1. Rachel

    Praying for you my sweet friend! I hope your blood work comes out okay and you are currently getting your PICC line placed! ❤️🙏

    Reply
  2. Lynn

    JG…you crack me up! You really had me giggling at the end.
    The silliness and levity you add to these posts lift me up. It’s so wonderful.
    Stay silly, keep the humor strong in your heart as this will get you through it!! Look at this as an adventure like climbing Mt Everest. It’s going to take all you got but if you make yourself and those around laugh it will be so much more tolerable.

    Humor is medicine. It lightens the heart and mind. We have Laugh O,clock here every night. We only watch funny stuff before bedtime. One of Marty’s mandates and I have come to absolutely love it.

    Fernie sounds like an earth Angel. So glad he is there and taking good care of you.

    You are my Oscar girl ,so hoping you like the line up. I thought they were in March.
    Super Bowl Sunday 🏈 should be great . Sad my little Patrick Mahomes won’t be there but it’s time for some new blood I suppose . Also, hoping for a wardrobe malfunction ??…..at the half time show 😜
    Wish I could send you some treats for the day after your fasting. We will spoil you once we get you home. It’s a gorgeous sunny day, so nice to feel some warmth from the sun and to see blue sky.
    Good Luck Baby, you can do this! You have a big team of cheerleaders cheering you on with Loads of LOVE and support
    😘xoxoxoxo♥️♥️♥️xoxoxoxo🥰

    Reply
  3. Jodi

    I’m sorry to read that you’re having so many little complications. They may seem small but they are a really big deal when they accumulate on top of each other. Thanks for letting us into your hair shaving procedure yesterday. I imagine it was quite traumatic but also rewarding as your beautiful hair will be soon someone else’s crown of glory! I’m not sure how they do the procedure now but three years ago they actually put the pick line in the jugular vein but they may have gone back to the subclavian. The next few days will be a blur for you as you will be very busy. And then it will come to a boring stall as you wait out the final two weeks. Thanks for keeping us updated!

    Reply
  4. Amanda O

    Aww. I love that Fernando is going to fast with you, what a kind and sweet gesture.

    Reply
  5. Mich

    I can completely relate to the itching craziness my friend. It can seriously send anyone mad!
    I’m so sorry! Keep taking the benedryl and prednisone.

    Xox

    Reply

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