So, I’m pretty sure I ended the my last blog saying how soon I’d be back with information on my Cytoxin Chemotherapy treatment.
Ok, So lets start from the beginning I guess. But, fair-warning,- I am slightly medicated.
No, I didn’t die; Yes, it’s been over a week since I blogged! And I’ve been thinking about the poor blog every single day. Whether it was time one day or energy another, I just haven’t gotten around to doing it. BUT NOW, I’m back in the hospital and I have all the time in the world.
Wednesday (Dec 21)
I had my outpatient Cytoxin infusion Wednesday the 21st, four days before Christmas. All went well. Better than expected to be honest. I took one Phenergan (Rx nausea pill I had on hand). I got there early in the morning around 8am, registered, and it was through the same room in the hospital as the plasmapherisis treatments- where I already knew most of the nurses. Then I got a comfy reclining chair, IV fluids, and Zofran (nausea medication) all before the chemo was administered. The chemo took about 2 or 2.5 hours I’d say… and then they monitored me for maybe another 30 min. A very nice nurse, Ashley, was in there the entire time, monitoring me and we chatted a bit. And it was over.
Then I went home, took another Phenergan (in case I got nauseous) and slept a few hours until around dinner time. When I woke up I felt fine, I was bored, and wanted to go somewhere! So I called my mom up, and we convinced my dad we needed to go hang out at the casino because she had ‘free money’ vouchers. I didn’t think it would be so bad since I had a wheelchair to be pushed around in all night. It really wasn’t that bad either. I got tired out pretty early into the night and went and hung out at the sandwich shop, but my problem was loosing $100 my mom gave me in 20′s that I had in my lap as I went through the gift shop when I walked in. I even had security look for it with all their ’ahhmazing’ camera systems- but nope-poof it was gone. There went my first hour and fun of the night!! My parents ended up winning money, so it all worked out. But I was a bit bummed, ya know?
Pre-Holidays (Dec 22 -Dec 24?)
My mom and I pretty much spent way too much time and way too much money shopping for last minute Christmas gifts that we DEFINITELY needed…
Then my dad was soo kind to wheel me down to LOVE Park so I could get some warm “mulled wine” from the Christmas Village where vendors set up a little zone to buy fun things in. I absolutley love the city and history of Philadelphia.
Sunday (Dec 24th)
YEP! We unwrapped them on Christmas Eve! Luckily, Santa even got his presents there in time. We didn’t get our GIANT stockings full of more goodies and gift cards and stuff until Christmas day, but that’s kind of how our (new-ish) tradition goes. It started several years back with one present allowed to be opened before Christmas. Then as we got older (into our 20′s?) it kind of evolved into all the presents!!!! That way we get to sleep in really late on Christmas day, and enjoy more presents (stockings) when we do get up, we have a huge brunch, and just relax and enjoy the day (with all our new stuff!!!)
Monday (Dec 26th)
This year, my older sister (Michelle) was finally able to get time off from work, and was able to drive up from Florida to visit for the holidays and introduced us to her long-time boyfriend Rob, and his son, Kolby, who were both amazing young men. Unfortunately they were only able to stay until Friday… but we had a great time while they were here! We had our traditional “Christmas Dinner” on the night they arrived, followed by more present opening! Then we showed them around the city- including visit the Liberty Bell and Independence Hall, plus lots of other exciting tourist stuff while they were here!!
Tuesday (Dec 27th)
I had Physical Therapy and found out that my orthotic leg brace was arriving on Friday (Dec 30!!!!) OMG SoOoOooo excited!! I am so very ready to walk again even if I will look like a pink shade of Forrest Gump!!!
← This is it!!!! I think I’m in LOVE! ❤
From what I understand, it will let me bend my knee around 30 degrees forward and then when my foot/heel touch the ground, hydraulics lock my knee back into place, allowing my leg to push forward – aka – walk!!!! Hooray!In addition to my leg brace and P.T, my grandmother (Gran) was scheduled to arrive from Mississippi around dinnertime on Tuesday the 27th, but due to a series of ridiculous flight delays, she didn’t get in Philadlelphia until around 11pm, so she didn’t even get to seee Ron and Kolby until the next morning.
[Side note: I think I started developing a slight this day...?]
Wednedsday (Dec 28th)
We took the entire family to Hershey Park, PA. We did tons of fun fun candy stuff! I was in the wheelchair of course, but it actually helped us cut in line once or twice at the attractions! (OOPS— I was happy/sad about at that at the same time). We designed our owned candy bars, fillings, wrappers and all- and watched the process of them being made from start to finish- which was pretty neat! We did lots of other stuff, a 3D movie, a ride simulating a virtual tour showing how everything was done and made, shopping, got employee badges, rode the trolley to see Hershey’s original house he built, which was turned into an orphanage for boys. By the end of the day I was definitely pretty beat up feeling. But then we went out to eat at Houlihan’s Restaurant, which was delicious….
Thursday (Dec 29th)But that was pretty much the end of my excitement ( Towards the end of the night I felt general malaise- sick, and was coughing a bit more, and heavier. The extreme drop in temperature and sharp increase in wind speeds probably didn”t help my lungs feel any better though.
Back to the real world. I went to Physical Therapy early (at 9am instead of 11am) so I could hang out with my family for a bit longer, but my dad took my Michelle, Rob, and Kolby out to South Philadelphia to get their famous ‘CHEESESTEAKS’ which were apparently delicious. And then they decided to take their own historic walk back to Center City (about 5 miles).
I was really starting to feel worse after P.T. sick wise, so my mom and I went to the ’Drexel Convienient Care Clinic.’ It’s pretty much like a tiny urgent care in the city. They fixed my mom up with some medication (Oh, BY THE WAY, she has shingles). But they told me they thought I had bronchitis and I needed to go to the ER for an XRay, etc. By the time that was all over, it was determined the doctor’s thought I had a strange abscess on my stomach, and bronchitis. They sent me home with a prescription for Bactrum (antibiotic), an albuterol inhaler, and liquid phenergan with codine (for cough).
Luckily, my dad took my sister and I out to walk out walking the city- so I didn’t ruin their day by being a BAHumBUG. We ended up getting home around the same time actually within a few minutes of each other- at that off time between dinner and lunch and we all went at ate at the local pub (best food ever-only half a block across the street from our front door). Then Gran and I went upstairs to go to sleep early/ I let Kolby hang out in my bed and watch movies with me have tickle fights etc until the adults got home from spending their last night hanging out at the local casino! Fun stuff.
Friday (Dec 30) — Sister leaves town//Hospitalization
The next day, feeling much worse, I made an appointment with my primary care doctor’s office, but unfortunately on such short notice it was a doctor I had not met. Sho direct admitted me to the hospital [of which you ^above^ can see my truly great view of historic city hall, right outside my hospital bedroom window!] . The doctor said my cough was awful, didn’t want the bronchitis to progress into pneumonia (with me being so susceptible via the lupus), and the spot on my stomach looked awful. Luckily, I had suspected this, and gave my sister and her family big hugs, kisses, and I love you’s before I headed off to the doctor’s office just in case. But they (my family) were able to do some shopping and more sightseeing before they left- so it wasn’t a bother that I was gone
Monday (1/2/2012) –TODAY
I am still in the hospital, day 4, going on 5. Hopefully I will be released tomorrow. My rheuumotologist and I think I am well enough to go home, but he also wants neurology and cardiology to
see me before I go. So it may end up being Wednesday…?
I will write another blog on my actual hospital stay (Dec 30 to Jan 0?) probably tomorrow. It’s not too exciting and eventful, but I took notes. In summary: I am currently still receiving 3 IV antibiotics to treat infection fromboth severe bronchitis (they said I sounded like a seal-boo) and also for the ‘phelgram’ (in the family of abscesses/folliculitis) on my stomach. They cut open my stomach and took out the infection, so that should be healing. In addition to pain meds and all my lupus meds, I’m getting nebulizer breathing treatments ever 8 hours and a 24 hour cool mist 50% Oxygen mask to moisten my lungs. Bottom line, I look pretty awesome. NOT.
I will definitely be writing the long(er) story of my hospital stay very soon. Be excited!!!
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