Day 4 of HiCy, Days 1 & 2 of IPOP + Bonus day off
First of all apologies for the delayed updates, the last few days have been hectic - thanks once again for all your emails and kind comments, Mel is checking them daily and it perks her up.
Day 4 of HiCy
Ah, so this is what chemo is all about then?
The nausea struck finally, but didn’t actually make ol’ iron stomach throw up, she was dosed with two different medications for nausea, the second one Comapzine, is the one that really worked.
It was a day of her generally feeling crappy, no appetite, weakness and headaches.
Bloodwork came back, counts dropping as per protocol. All doses of chemo have been given and were tolerated as well as can be expected really, so proud of her.
Day 1 of IPOP
Or the day after chemo. Cyclophosphamide stays in the system for 48 hrs after the last infusion. Boy was Mel feeling it.
This was by far the worst day of the trip so far.
Mel woke up early, well got out of bed if she slept an hour all night I’d be surprised. She had a feeling of ‘antsyness’ couldn’t rest, get comfortable. I awoke to the sound of vomiting, it was a nostalgic sound that brought me back to my younger days of debauchery living with Steve. Ahh…good times.
Mel was throwing up after just taking her compazine. She decided to take another as she must have chucked the other one, this turned out to be a mistake.
The nausea didn’t go away and she hadn’t eaten for nearly two days when we got to IPOP. Mel was so weak she wanted me to push her in a wheel chair.
They have this cool thing at JHI where you have an electronic patient ID card and you just swipe it on the ground floor before going to the clinic. They then know you are on your way and you are registered, you can also pay for your co-pay and buy parking passes from the booth.
The ability to buy parking passes only works when the cash office is open, which seems kind of against the whole point of an automated system.
Anyway, I digress. The card didn’t work and told us to go to the registration room, we did and then I was roundly ignored for several minutes by the only person we’ve met so far at Hopkins who is consistently rude, impatient and just not very nice. Mel started to explain that we were to go to IPOP but the machine said come here, and after being ignored for a bit, the woman grunted at Mel and waved in the general direction of her left. I took over because it was difficult for Mel to talk through her mask and she was also choking back vomit. Oh and also because I was about to strangle this person.
Eventually her colleague next to her got involved, swiped our card and gave us the appointments for the day.
I got Mel up to IPOP as quickly as possible, her weakness had got worse and her neck was starting to twitch oddly.
At IPOP, Dr. Brodsky stopped by, he had a chat with us and I asked about the blood numbers at admission then the day after. (See numbers below). Normal apparently, the numbers will jump around but the overall trend will be down.
Mel couldn’t get comfortable and her neck twitching was spreading, they took some further blood as there was a concern her calcium levels could be low.
Things steadily got worse until Mel was having difficulty breathing, then I was ushered out of the room and the nurses took over.
Mel had a panic attack and couldn’t breathe, she was hyperventilated and they quickly had her breathing into a brown paper bag. I thought they only did that on 1950’s romantic romp’s starring Terry Thomas but there you go.
It turns out she’d had a reaction to the Compazine, like the chemo it builds up in your system. They calmed her down with Ativan and eventually things returned to normal.
We got home, I changed my underpants, and Mel managed to eat some PF Changs! Early night.
Day 2 - IPOP
After the excitement of the day before it was a very uneventful trip to IPOP.
Mel had awoken and the difference was amazing! Appetite back, colour in her cheeks. Nagging me to clean up the apartment.
By the time I had arisen there was a lengthy shopping list on the table for me, so off I toddled to Safeway.
When I got back Mel had cleaned the kitchen and generally tidied up and was hungry, the transformation just from the day before (and 48hrs almost exactly from the last chemo dose) was incredible.
MS wise she’s seen no real change, still muscle weakness in the left eye, weak and tight left side and and numb/tingly finger. Constipation still the same too. Blessedly she’s had no bladder issues with MS - something that always surprises Neuros for some reason!
Today her main symptom with MS which is fatigue had eased but shouldn’t read into that too much, it was just a good day - she had those too before.
At IPOP blood was taken, Mel’s Nurse Practitioner checker her over, and nicely asked me my opinion of her recovery too. It’s good when they involve you.
As soon as the counts came back we were free to go - here are the up to date counts - obvious downward trend:
Date Hematocrit WBC Neutrophils Platelets
4/22 37.1 5880 3670 314
4/24 36.8 9920 5840 338
4/25 34.2 7110 4740 271
4/26 32.4 5710 4580 249
4/28 35.1 2900 2480 196
4/29 32 2770 2580 174
Everything was fine, Mel was doing well so they gave us the next day off.
Which was doubly pleasing because the UEFA Champions League Semi Final (Second Leg) Chelsea v Liverpool was on.
Tuesday night Mel got the payback from doing too much earlier in the day. Her Hickman felt ‘weird’ and pulled and her muscles on that side were aching. She’d also developed a rash in the area and was itchy on her scalp.
She took some of her pain meds and eventually fell asleep.
Day 3 Post HiCy - Day Off
Mel’s itchiness continued, she called IPOP and she can take Benadryl, off I tootled to get it.
Nothing to report today Mel wise. Easy day, apart from itchiness controlled with benadryl and tiredness, all was well.
Liverpool lost, I got drunk. Glad we’re not playing Utd in the final.
Back to IPOP tomorrow, I’m going to ask them to change Mel’s dressing it looks all gunky.
