---Written Friday July 3rd---
Time for a post. It's been time for a while, a lot has been going on. I'm back in the hospital, have been since Tuesday. And, again, it's my last night here (if all goes as it's supposed to, of course).
On Monday, we went to the hospital to get my "labs" drawn. It was the easiest blood test I've ever gotten. The lady used a baby needle, which probably helped, since my veins are tiny. So that went pretty quickly. I'll be doing that twice a week for a long time (not sure if it's for the whole two years of my treatment, probably is), though we can go to other places outside of the hospital.
I spent my last day out of the hospital mostly outside. Rafi came over, and we walked on the bike trail along the Erie Canal (after mom attacked me with the sunscreen). Mom and Diana walked too, though they left later than we did.
Tuesday was a big, long day. I had to be at the hospital by 9:30 AM. I was going to the clinic this time, though. Which is where I will be going every week (probably Wednesday) for the next two years, for various things (chemo, pokes, check-ins, stuff like that).
We (my mom, Erek, and I) took the Silver elevators to the 6th floor, stopped at the first desk we found, got directed to the right place, checked in.
After she recorded my height and weight, a nurse led us to a little room. One of many little rooms, of which hospitals have PLENTY. We met Margaret, the other nurse practitioner, who is really awesome, and very nice. We talked for a while. She wanted to hear the whole story, from the beginning.
Finally, a crew arrived for my operations. I was going to get a PICC (Peripherally Inserted Central Catheter) line put in (the "super-IV" I mentioned in a previous post) and a bone marrow biopsy, as well as chemo injected into my spinal fluid. The biopsy would determine if I was in remission, and whether we could go on to the next phase of chemo (which would start as soon as we found out, in a few hours).
They had to put an IV in, to give me sleeping potion. That was a delightfully easy IV insertion. Yay baby IVs and talented nurses! Propofol, the sleeping potion, was given through my right hand. The lady giving it to me said it might burn a bit. Um, understatement. It made my whole hand ache a lot, and burn a lot, and to add to it, the IV leaked white stuff all over my hand.
But finally I went to sleep, and woke up, and had what just looked like an IV in my upper left arm (but with two tubes sticking out instead of one).
They gave us pizza, and we hung out for over an hour, until they got my biopsy results back. Good! I was in remission! If we stopped chemo now, the leukemia cells would come back, but they still call it "complete remission". At the end of my treatment, when the leukemia shouldn't come back, they'll call it "molecular remission".
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Continued on July 4th
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Ended up going to bed without finishing the post.
Anyway, after they determined I was in remission, I had to get the chemo nasties. Doxorubicin, Dexrazoxane, Vincristine. And later Methotrexate. But first I had to go down for an x-ray, to make sure the PICC line was placed right.
I was still feeling a little off, probably from the Propofol. While we were waiting (in a little room, because mom was worried about me catching something from the many other people in the waiting room), I fell asleep. It was kind of cool, it felt like my head wanted to drift up and back, even when I was sitting normally and not even trying to sleep.
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Continued on July 18th
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So, I've been continuing these posts on different days... It's just that I kept getting interrupted, and then I didn't pick them back up for a while. In this last case, for a much longer while...
Anyway, it's been so long that I can't remember all the details starting right from where I left off. And even if I could, there are just so MANY. So I'll do the best I can to give an idea of how these last few weeks have been going.
It turned out the PICC line was placed right, which we found out after we went back up to clinic for my chemo. Straight back to the same little room we had originally been in. I sat in my reclining chair, still exhausted.
The nurses came in, prepared the chemo IV bags, and gave me the lovely stuff. I don't think anyone put on that flattering smock/dress/papery thing this time.
Later that day I was re-admitted into the hospital, for my High-Dose Methotrexate. A big bag of yellow fluid that runs for 24 hours. It's a whole process though. There was other stuff they had to give me first to protect, and then after the 24 hours, they had to flush it all out. I had to stay in the hospital as long as there was still a certain amount of Methotrexate left in my system. Usually a few days.
That hospital stay was a lot different from my long one.
The main thing was this time I had a roommate. 'Cause I wasn't neutropenic! I was in a room on the circle around the nurse station, instead of slightly further down the hall.
I was glad I had the bed closest to the bathroom (furthest from the door), because I knew I'd be using it a lot (they had told me all about the many IV fluids I'd be getting). And with Winnifred, it would have been annoying for the other girl, me rolling past every 45 minutes, dodging chairs and beds.
Jessica, my roommate, was nice. I never really got to know her at all, though, since she was hardly ever in the room (I think she liked to hang out a lot in the rec room).
Erek stayed overnight there most of the time, sleeping on the comfier-of-the-chairs-in-t
We watched "Benny and Joon" with mom one evening (it was unusual, because she's not much of a movie person), and I loved it. Such a sweet movie.
During my stay I just felt really nasty. Thanks, chemo. But also, the doctors said that being taken off of Prednisone (my first cycle of Prednisone had ended the day before I was re-admitted) could make me feel like that too. My whole body was aching, I was tired, and just generally felt yucky. Didn't go out for long hospital explorations like last time.
My Methotrexate levels were close to low enough to let me out of the hospital on July 2nd. I think they were something like 1.7, and they only let people go when they're below 1.0 (I don't know what the units are for those numbers). But the nurses and doctors said the last bit can hang on for a while. By July 3rd, they were down to 1.2. And when they drew labs the morning of July 3rd (it takes a while for the results), which would determine if I could be out that night, they came out at 1.1. So close! But I would probably have been staying anyway, because there was another problem.
I had noticed that all of my aching was gone. Except for in my left arm, which was where my PICC line was. I really noticed it when Chrisanne, my nurse (and another really awesome one), was in doing something or another, and talking to us (my mom was there too). So she got out her measuring tape-ish stuff (kind of paper-like, actually), and measured it (the nurse from when the line was inserted had measured my left arm, and given us the measurments, for comparisons later), checking for swelling. We compared it to the original. In one place, it had swollen 1 cm.
I think the doctors were brought in, and it was decided that I should have an ultra-sound done, to check for blood clots. So eventually they got that set up, and Transport came and hauled me off.
Once I got back, we just had to wait for the results. There was a pretty good chance they had found a clot.
Ever since I had stopped taking Prednisone, and there was no more of that huge appetite stuff.
But I think Methotrexate also helped. Anyway, I definitely lost my appetite. I could hardly bear the thought of anything on the menu, or almost any other food. I managed to eat some simple foods and drink kefir.
That evening (July 3rd), Erek and I were poring over the menu, trying to figure out what I should order.
I finally decided on a veggie sandwich, with some sort of side dish and lemonade. I dialed 7-3663 into the hospital phone and listened to their hold sounds for a bit. And JUST as someone picked up the phone, Erek said something (I don't remember what) that set me into a HUGE fit of laughter. We had been joking around a lot earlier, even while trying to decide what to order, and this just set me off. I couldn't stop laughing. I desperately tried to communicate to the poor person on the other line that I was LAUGHING, not dying. I even managed to blame it on my brother too. And then I had to tell her my last name (which usually means spelling it out) and my date of birth. I just hoped she could understand me. Anyway, the insane laughter kept going, and I didn't feel the end coming, so I shoved the phone at Erek and asked him to order for me. He did. It was kind of a complicated order (since I'd modified the sandwich a bit), but he knew it well, because we'd gone over it so much.
When I got the sandwich, I really couldn't imagine eating it. But I decided to try a cucumber slice off of it anyway. And as soon as I took the first bite, I knew......... I could eat CUCUMBERS!
This was because: a) They tasted SOOO good (I've always loved cucumbers), and b) my stomach was apparently happy with them, unlike most of the other food I'd tried.
I promptly ate all of the cucumber slices on the sandwich. And was sad that I didn't have more (there were only 2 or 3). Erek and I had a great time joking about trying to order a whole plate of cucumber slices from the cafeteria.
And after fifteen minutes or so, I actually decided to try. I was really worried about having another laughing fit while on the phone, especially since somehow asking for only cucumbers felt ridiculously funny. But I dialed 7-3663 anyway, and waited. When someone picked up, I gave my name and date of birth clearly and calmly. And then proceeded to ask if I could have a plate of just cucumbers. She said, in a surprised, yet oddly calm way, "oh." And followed it with, "alright."
But after the "half hour or forty-five minutes" that she said it would arrive by had passed, I was slightly worried. After an hour and a half, I was more worried. Anyway, they never came. :(
But here's the thing. The next day, I tried to order them again, this time just as a special side with my lunch. My lunch came. But no cucumbers!!! And they were even printed in BIG BOLD LETTERS on the reciept. I was sad. I even called back, and after I gave her my last name, she asked if I'd gotten my lunch. And I explained about the cucumbers, and she was really apologetic, and said they'd send some up. I felt sort of weird calling back, but it was scary how much it felt like cucumbers were the only things I COULD eat. Anyway, they never came.
That morning, Cheryl had written on my dry-erase-board, "Methotrexate levels: .067!" Yes, I still remember the number.
It turned out there WAS a blood clot in my arm, and the PICC line would have to be pulled. Eventually, a Resident came and pulled it out. It couldn't be used if there was a clot in its vein. The line just sort of slid out. Almost a foot (yes!) of small blue tube appeared. Didn't hurt coming out, though my arm still ached a lot.
We hung out, went for a walk (I was feeling better. Better-ish. Not a LOT better, but better enough to go for a walk. You get the idea.). I wanted to show my parents the tunnel and painting, so we went in search of it. Found it! But it was locked. I guess because the Nursing School was closed since it was the 4th of July. So I showed them the courtyard, and then we all wandered outside the hospital.
That evening, all three of them (mom, dad, Erek) went back to RMH for dinner. I enjoyed some quiet time, and then started thinking about cucumbers. I was actually imagining their cold, juicy, crunchiness, and tastiness, and all their wonderful cucumberness. I didn't even try ordering them. I called mom and asked if there were any cucumbers there, but there weren't, so I asked if she'd be willing to pick some up at the grocery store. She said she would!
When they got back, it was mostly dark. We had asked around about where the best place would be to try and see the fireworks. The popular vote, especially at the nurse station, was the top floor of the parking garage.
At around 9:30 we got blankets and cameras, preparing to go. I got one of the cucumbers they had brought (YAYYYYY!!!!!!!), scrubbed it, and we headed out. Me wielding the cucumber, whole, and wonderfully dark green.
There weren't too many people out when we got there. Maybe 10 or so. The air was cool, it was a good thing for the blankets. But it was really nice. I munched on my cucumber, holding it like a banana. We could see fireworks from all sorts of places. The main ones we could see were the downtown ones. A few families with kids, mostly little ones, came out, and the kids were very loudly appreciating the fireworks. That was a lot of fun to hear, their shouts of happiness going along with especially spectacular explosions.
The evening was a very nice one. Another really good time hanging out with the family.
My last night there, for a while.
I'm going to leave off here, even though I'm 14 days past where this ended. I think 14 days can go in another post.
