I was admitted yesterday for chemo for mobilization and discharged today after 24 hours of fluids.

First of all, Northwestern is a beautiful hospital.  When Michael and I checked in at the first floor desk at Prentice they said to have a seat in the lobby which is like a hotel lobby and a woman came to take us to our room.  Fancy.

The room was very nice with a couch that converts to a bed for guests.  They bring linens in the evening.

So my visit started with an introduction to the nurses and patient care tech on the first shift.  They are very systematic and organized.  I had brought my meds in their original packaging as instructed and they took them to pharmacy to be verified and then brought them back.  They still gave me meds from their supply with the exception of the ritalin because a hard script is needed for that so they gave me my own.

Next came “Tushy Tuesday” which is a swab of your tushy to make sure you don’t have VRE.  I didn’t think it was as big as a deal as some posted in the forum….it’s quick not a big deal but I’m willing to do anything for this process.  We live with worse stuff every day.

They then came to take my blood and warned me they were doing a pregnancy test which was fine of course.

While we waited for them to bring the cytoxan (chemo) my stemmie sister Daniela stopped by with her husband.  The nurse asked me a bunch of questions and entered them into the computer after making sure I was okay with them hearing.  We laughed and told them we have no secrets we talk every day about our fun MS stuff as we bonded early on in the process when we met at our evaluations.

They also took my vitals- weight, height, temp, blood pressure in laying, sitting and standing positions.  Then they took a blood test including a pregnancy test.

So the nurse started the chemotherapy drug cytoxan through my IV together with mesa zofran and lasix and fluid.  The cytoxan was only for 3 hours but the other IV fluids were infused for 24 hours.  Mesma is a drug that protects the bladder from the chemo as it can break down the lining. The nurses said that they also sometimes include steroids but since I just had them they were leaving them out.  The zofran is to prevent nausea and I never got nauseous.  They said to expect it a couple of days after being home but I’m planning to pop a pill to prevent it as I’m prone to nausea anyway.

I received my labs back pretty quick and everything was pretty close to being right in the middle of range.  The nurse said she hasn’t seen such perfect labs in a year. 

The worst part of it was really the lasix making me have to pee every 15 minutes, then 20-25 minutes, and then less frequent but since I got the lasix every 8 hours it was not fun.  They offered a commode and I said I won’t use it, but thankfully the bathroom is pretty close.  They monitor your output so you pee in what they call a “hat” in the toilet.  The day nurses are great about coming to get it every half an hour to check your output in “the hat” and dump it but the night nurse was kind of annoying I had to call her her to come…Michael gave her the nickname “Lee Lee” but that’s not her real name.  There’s a reason she’s a night nurse.

However, when I repeat this in May for a few days I’m opting for the catheter because it’s very tiring.  This is my IV pole which became my shadow in and out of the bathroom.  I named her Lola.  Like Lola the pole-a.

It’s not fun sleeping with this stuff in your arm but they do a great job of taping it to make it comfortable.

I was more dizzy than usual and definitely more forgetful.  I needed Michael to be my brain.  My suggestion for those of you in process of this is to have someone with you.  Even if they are just ordering your dinner or stopping you from taking off your IV bandages too soon or being able to report something to the nurses.

Also keep in mind you cant change your shirt 24 hours because you’re strapped in to the IV pole.  So make sure you’re wearing the shirt you want to sleep in.  I wore a tank top bra with no underwire so it was comfortable under a tshirt and shorts.

I found the bed to be comfortable but others stated they had to ask for an egg create to be comfortable.

Day #1 yesterday I had my protein shake for breakfast so I didn’t feel like ordering anything, Michael was able to get something from the lobby cafe. Lunch Michael picked up at aubonpain I had the mac & cheese  and he had the hot ham and cheese sandwich and we each had a cookie and it was a good lunch.  Later he want to Dunkin Donuts for the happy hour special the nurse told us about when he asked about coffee and they dont have it on the unit so he went to the happy hour which is open from 3pm-6pm where you can get a iced coffee any size for a dollar and he brought me back filled donuts at my request.  I ended up having the boston cream in the evening and the jelly in the morning.  Yum.  For dinner I ordered the grilled cheese and tomato basil soup which was good….they have a very nice menu.  Breakfast this morning I had the yogurt fruit parfait and breakfast potatoes and banana.  I didn’t care for the potatoes too much but generally the food is very good and there is a nice menu, you can even get snacks, I doubt anyone goes hungry there.

We didn’t get much sleep last night.  I got lasix at 9 which she thought I’d be fine around 1030 having to pee constantly but I didn’t go sleep until after midnight.  They warned me that the phlebotomist comes between 2am-4am and she came for me at a quarter to 4.  Then shift change with the PCT (patient care techs) happens at 6am and she came to introduce herself, asked if I was having pain and I told her I had a headache and I don’t remember exactly what else.  Then at 7am I met the next nursing shifts….they’re very good at transitioning and the last shift of nurses introduces you to the new nurse coming on and catches them up on your case in front of you.

Around 8:30am Dr Burt came to see me with his NPs as they were rounding.  His NP assigned to me, Michelle, came back to meet with me for paperwork and to talk about the neupogen injections and said she would have the RN bring them to be before discharge and to keep refrigerated.  She was very helpful, answered questions, said it was okay for me to bring my protein drinks when i return and they would keep them in the nourishment room for me.  She also gave me a norco Rx as the neupogen injections cause bone pain.

Were were able to leave as soon as my IV was up which was thankfully early because we were exhausted packed and ready.  We filled the Norco Rx at Walgreens there and ubered home.

I feel fine I’m just tired.

I’m going to let Michael type the caregiver perspective.

The role of the caregiver was a great learning experience regarding how everything was scheduled and also what to expect regarding medication and the effects it will have on my love one. It was my duty to continue to provide love and support emotionally but also to assist in anyway during our stay. At times when she was having to go to bathroom every 30 minutes i assisted her by unplugging her IV pole and standing by her as she walked to assure safety. I wanted her to be comfortable at all times so checking in with her periodically on how she felt or if she needed anything is important. The room temperature was an issue in the beginning but once that was figured out we were good. i wanted to make sure her meals were ordered and ready for her at all times so calling down to room service with her request,  they were very good with time only takes an hour from time food order was placed. I recommend that the caregiver bring comfortable clothes as well,  the coach bed is very comfortable. Most critical duty is listening to the instructions and information being given by clinical care team. In our case she has periods of forgetfulness so i had to be her brain at all times so that i could remind her or repeat what they had told us during the stay. Finally at the time of discharge it is important as the caregiver to really understand the discharge information that the team gives you and the monitoring that will be involved at home from dietary needs, potential side effects, what to do if she runs a temperature, when to give injections and how to give as well, and when the next appointments are and what to expect at them.

Hope this info is helpful….also if you’re going thru this keep your H.O.P.E. handbook out as it’s very thorough.

Thanks for support from family and friends!

Ellie