I felt I needed to preface this post as I am getting comments that some of my information may be too TMI for people.
Let me be clear: this blog is for pwMS (people with MS) who are considering HSCT. I think what ‘mainstreamers’ don’t realize is that these TMI things, I am sharing, are part of many of our daily lives, including mine. In fact, some have it far worse than I do. It has been an extremely difficult transition for me to be transparent about all this as I’m a very private person. With that note, I carry on….
Slept the best I’d had in a long while with no nausea. I stayed hydrated as per protocol, yet was able to get to sleep between bathroom breaks. Even with a longer sleep I still woke with that severe fatigue like yesterday, but I wanted to persevere for my 9:30am chemo plan.
8am meds:
Dexamethasone 4mg
Pantoprazole 40mg
Ciproflaxin 500mg (anti-biotic) x 2/day
Acyclovir 400mg (anti-viral)
Itraconazole 100mg (anti-fungal)
Fenazopiridina 40mg x 3/day
One hour before infusion:
Oral Aprepitant 80 mg
Once again, I was delighted to simply have the PICC line ready to be hooked up so easily for my fourth dose of poison.
VIA IV:
Ondanestron 8mg (anti-nausea)
Dexamethasone 4mg (steroid)
Aprepitant 40mg (2nd dose, as mentioned above, used as anti-nausea/prevent vomiting)
Pantoprazole 40mg (PPI, similar class of Omaprozole)
Cyclophosphamide 1900mg (chemotherapy dosage decreased today 40mg/kg body weight)
MESNA 2000mg (used to prevent hemorrhagic cystitis/bleeding in the bladder from chemo)
Ondansetron 8mg (as above)
Before getting home my bowel started going nuts, and diarrhea began with a vengeance. To make mattes worse, I’d been pretty blocked up the last five days (even with my very aggressive bowel routine). I spent perhaps 10 hours dealing with that, then like a light switch, it turned off at about 10:30pm. Almost immediately after, the bladder switch was turned on and it went bonkers. What a night it was. Luckily, we have the option to request having a commode by the bed which I found very helpful 😉
Meds before bed:
Aprepitant 80 mg (2nd dose, as above used as anti-nausea/prevent vomiting)
Hi Jenny
Have been following your journey. Just want you to know I am thinking of you on this journey.
Wish you the best
Jenny I just have to say that your posts to not have tmi. Those of us reading your blog have subscribed because we desperately want the information you are providing.
Not only are you exposing yourself for our benefit but as a pwMS myself I have personally experienced many of the “unglamorous” effects this heinous disease inflicts upon us and appreciate how vulnerable you must be feeling.
I am sending positive thoughts and look forward to your next post.
hey Jenny,
just so you know, it’s not just you. since i couldn’t walk at the time i had a catheter but i do remember having what felt like a gut explosion in bed too. it was disgusting and embarrassing but i guess my medical team was used to it since everything was cleaned immediately – me, the bed, etc. it happened just once but with that amount of cytoxin and whatever else it’s no surprise. i am 100 pounds and i really don’t remember eating much during the whole process. not much appetite of all of course.
Jenny, it is hard to keep up with all that you’re doing and experiencing! I look for updates daily and I can’t thank you enough for taking the time to share your updates daily! You are not only doing this for you. You’re doing this for “all of US” and generations to follow! The detail is necessary and so very much appreciated! Please, share it all. We are so grateful. We’re riding the waves with you, yet not near you. Thanks, once again. You’re winning the battle :). Try to eat whenever you’re able! Food is also powerful 😊
and maybe a garden hose for quicker tidy ups? 🙂
no such thing as TMI when you in deep shit in treatment. Jsut ask Lisa.
I doo (doo) draw the line at picking up wet dog poo though ….ughh
thanks for sharing 🙂
xoxo
You are a blessing to this world. Your willingness to share and be vulnerable in an effort to help others is inspiring and humbling. I continue to read along in awe of your resilience to maintain these blogs even when it’s clear you’re not feeling well. Sending you so much love! 🌹❤️
Post your experience. Get it out. Help somebody else. If it TMI then peeps can just not read your blog. I find nothing too graphic. Day by day!!!!!
Jenny, definitely not TMI, thank you for putting what I know is an immense effort that is for sure using up many spoons. What you’re doing for others is incredibly helpful. I look everyday to see if there is an update. Love you and look forward to seeing you in July. ❤️🙃🤗