HSCT Journals

February 18th: +1 Transplant

by | Feb 20, 2022 | Blog Posts, HSCT Journals | 3 comments

I had a much better sleep than the day before (no rocket launchers, haha!). I felt blessed with no nausea once again. I still have a few days to get through while the Cyclosphomide is working it’s ‘magic’ in my body. You have to know my fingers/toes are triple crossed that I bypass the nausea/puking altogether. Oh, and thank goodness my butt finally stopped bleeding after 48 hours.

8am meds:

Pantoprazole 40mg
Ciproflaxin 500mg (anti-biotic) x 2/day
Acyclovir 400mg (anti-viral)
Itraconazole 100mg (anti-fungal)
Fenazopiridina 40mg x 2/day

Rosario, the top shelf chemist, came today at 9am to test my blood again. It is SO much more comfortable to have the finger prick than in a vein. I’ll video it next time so everyone knows what I mean. My finger prick didn’t clot for a quite a wihle making me curious as to what level my platelets were at.

Breakfast: steel cut oats with every berry we had in the fridge, topped with crushed pecans and honey. Can you spell yuuuummmmmy?! I am so spoiled by Fernie 🙂

By mid-morning I began to feel physically very unwell. As the day wore on I unravelled exponentially and my typical MS symptoms escalated to that unbearable level. I felt the poltergeist clawing against my brain, inside under my skin, pulsatiing in my lips and trying to wrench my innards apart. Internally, I was writhing, rocking back and forth, like that caged black bear inside a mouse sized cage, unable to pry the bars apart. I was shivering (usual MS symptom) so Fernie got me a herb tea to help, and a blankie wrap myself up with.

I medicated as much as I could through the day and afternoon, but nothing provided any relief. My bowel had nasty cramps up high, making next me wonder if I was going to have a Boom soon (not a ‘tick, tick…and then Boom’, but straight to a ‘BOOM’).

Sidebar: I have to share that this is a little insider communication between Fernie and I about my bowel’s status. It organically evolved after I watched that outstanding movie ‘tick, tick…Boom’ with Andrew Garfield earlier in the week. BTW, watch it if haven’t. SO GOOD.

A few people may wonder what meds I’m using so here is the list of them, which I increase depending on my physical needs, and cycle them continuously based on their half-life over each 24 hour period, the max daily dose, as prescribed and supervised by my medical practitioners. Also, I have not outlined another list of meds/supplements to assist with daily bodily function, as well as emergency medications, that I pull out when necessary, again under supervision of my medical practitioners.

Tizanidine
Amitriptyline
Gabapentin
Diazepam
Lorazepam
Acetaminophen (Paracetamol)
Benadryl
Ibuprofen
Metformin (I’m not diabetic. I take it as a trial for it’s potential as a remyelination drug)
Valcyclovir (as preventative of HHV)

The doctors came unexpectedly at 6pm to check on me and to give my blood results from the morning. Wow, my body was once again highly responsive to the chemo (even with a 20% reduction) and had already showed it’s affect.

My RBC and WBC were sitting at approximately half the low level of normal, and platelets as expected were quite low at 47 (normal 150-450). If my hemoglobin or platelets go below a certain level they will do a transfusion. Not worried, Fernie and I will be vigilant for any changes.

Dr. Andrés commented again that they were rather surprised by my body’s response to the chemo. He said, in reply to my current physical status, that it’s probably another relapse following the chemo. This was a good sign (for an unknown reason they do not know) for a positive long term outcome. Loved the hopeful feedback. As they left, I asked them to drink some wine and tequila for me tonight (umm, drink a lot for me please?!).

Getting more concerned that my bowel was going to explode I thought it prudent to move closer to the bathroom and into bed. Soon after my left leg violently lurched high into the air, along a few other muscle spasms rotating around my body, like a gopher burying nuts. It felt hideous. OK, more spasticity medication. These wild muscle contractions are not a new experience for me, just more intense at present, plus they told me they are common post chemo, which only added fuel to my inner fire. What else can I say, it’s painful.

Here’s a raw note I dictated to my notes as basis for the blog. “It’s 9:40 PM as I dictate this and I feel every part of my body fighting, crushing cells, doing its best for me. I have that chemo brain feeling again where my words, visions and comprehensions are a few steps behind reality. Tomorrow will be better, I know it. Please.”

3 Comments

  1. Graeme

    Hang tight Bug…..Trying to envision what you are experiencing required imagination at times although, having had my share of gut issues, I was able to connect with that aspect of your account more directly. As always…I admire your spirit and determination however much you may feel this is very challenging in the moment.

    XX

    Reply
  2. Sandra

    You are so brave and strong. All that you have endured and you are still articulate and engaging. Thank you for chronicling your journey. Sending continued hugs and positive healing vibes. Tomorrow will be better my sweet friend xo Hang in there!

    Reply
  3. Wendy

    As we follow your journey to a healthier Jenny, I just have to say you are so brave and generous to share this with pwMS. On a much lower scale, I remember HysterSisters was my go to site after a hysterectomy. It gave me great info and a feeling of not being alone. I know this blog will help others – even tho it is hard for some of us to read at times. ( but I do not miss one). Your strength and stubbornness will make this happen. Love ya JG💕💕

    Reply

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