To Do Soon-ish/Goals/Things I Want to Get Done:
->Get my jewelry business up and running again.
->Practice flute more -- get back in flute shape.
->Learn the Dutilleux Sonatine, Cimerosa concerto, and the Hindemith flute Sonata.
->Play contra dances more.
->Strengthen foot percussion again.
->Visit friends I've been meaning to visit.
->Sort my things and get rid of a lot of them.
->Henna tattoo my head.
->Go to acro in Olean.
->Write letters, reply to friends' letters.
->Set up a very cozy, nice space in our new apartment.
->Think about college visits and timing.
->Compose more.
->Make a tune-book of my tunes/write them all down in one place.
->Write more blog entries.
->Fill in my spaces on the TS recording.
->Be super prepared for the RFA competition.
->Study for SATs/take SATs.
->Be in normal physical shape.
->Practice piano.
->Get more sleep.
Friday, September 4, 2009
Life Is Moving Right Along
Sooo far behind, I've been really bad about keeping you updated.
Here's what's up!
Last few weeks have felt kind of normal, in a strange way...
For one thing, my chemo was delayed for about three weeks. A 6 week long cycle instead of a 3 week one. My counts didn't come up enough to start again. So we checked, and checked, and my red blood cells went up, and my platelets went up, but my neutrophils/white count didn't. Every time I got a blood test, I was sure they'd be up. But three weeks went by. So I was really neutropenic for a while. Didn't get any chemo, and I felt fine. Great, even.
I played an entire contra dance with one of my bands, Tunescape. The Rochester contra. It was a complete BLAST. I didn't even feel much more exhausted afterwards than way back when. Sooooo much fun. And we went out for sushi before the dance, which is kind of a tradition, though I didn't have any sushi (sad, but unknown raw foods were a no-no for neutropenic me). But the miso soup was AMAZING.
I have gone to three TLC (www.teenslivingwithcancer
I saw two of my really close friends off, in the last few weeks, as they took off for college for the first time. I've been really involved especially with helping Sylvia. I spent a huge amount of time at her house, keeping her company during the packing/moving out process. I felt really glad that I got to do something important for her in return for her crazy amount of time spent with me this summer, especially in the hospital. And besides, it was a good excuse to spend extra time there!
I healed well after the insertion of my second port (the central line that I had put in over a month ago), and the big hole that was where my old port was is almost completely filled in.
Yay!
It was likely that I got some sort of virus last cycle, which some of the doctors at clinic think could have held my counts back. And now I've been sneezing a LOT, and snuffling, and it feels like what I imagine allergies feel like, but I've never had them before. But I've heard things like that can start with chemo.
It's been fun noticing the foods that I really like/have liked lately. 'Cause food means a lot right now, especially since my appetite has been slightly lacking/weird.
Yum list: Soup (mostly vegetable), green beans (sautéed, with or without other stuff, though with soy sauce especially), cucumbers (raw, by themselves. Mmm. But you've probably already heard me talking about them), carrots (dipped in salad dressing or by themselves), SALAD, pickles (whole crunchy dill pickles), salad, tomatoes (just whole, by themselves. Wonderfully messy!), zucchini, corn on the cob, rice with stuff, potatoes, bean burritos (with some cheese, tomatoes, salsa, and sour cream), baked tofu, that green juice that Odwalla makes, sour gummi worms (don't know where that one came from, considering all the healthier foods I've been thinking about), salad. Salad, as in dark, crunchy, wonderful, fresh lettuce, with some sort of salad dressing (vinaigrettes, Annie's Goddess dressing, garlicky, yummy). I don't usually make the salad with any other vegetables, for some reason. I think because I'm so eager to eat it right away...
But as I obsess with the salad, and veggies, and things, everybody keeps telling me that I need caloriescaloriescalories. So, a few days ago Sylvia said something like, "Ok, before you have your salad, you have to have some ice cream." So I did just that. The ice cream (vanilla, my current favorite) was nomnomnommy, but as soon as I finished it I went straight for the vegetable drawer in the fridge. :D
I went home for the first time since sometime in May a few weekends ago. It was WONDERFUL. I live about two hours away from Rochester, and I am pretty tied to being in Rochester for the next two-ish years.
But mom and I took a weekend and drove home. It was great. I cuddled my cat a LOT, and my dad and I curled up on the couch and watched a bunch of movies. We also went to Bradford for the weekly anti-war protest, and hung out with those people for a while.
I drove the Cabriolet with the top down, which was a blast. I adore that car. It's old, and tiny, and fun to drive, and it's a standard, and it shifts nicely. <3
I've been also having fun monopolizing the shiny Mac laptop that my mom got in exchange for the lemmon iMac we got last year. I adore this keyboard. Nuff said.
Today, after watching Sylvia ride off to another life, one in college in Canada, Mom and I drove over to the Waymans' place. Mom swam in the lake, Betty windsurfed, and I sat on the grass next to the lake and worked on a bracelet. Finished it. Then I started feeling a little icky, and cold, so I moved into the sun, put on a hoodie, and curled up on the side of the hill. I slept for over an hour.
Some things that are really exciting, that should probably have been earlier in this post, because of how exciting they are.
Ok, well, this first one is possibly the most exciting just to me...
About a week ago I finally took out my seed bead collection. I used to make a lot of jewelry with them, especially in the car on long trips. I would sell them wherever I got the chance, especially at the beach. But I went a long time without making anything. Then, when I went home a few weeks ago, I brought my whole bead collection back with me to Rochester. And the bead loom and beadweaving supplies that I was sent while in the hospital. I'd been wanting to try bead-weaving for a while.
I went to work on it, and came out with a bracelet that I was extremely happy with. And then I made another one. And another one. And I love to make them, and I already have three commissions.
So this semester I'm only taking one class at MCC, calculus. I'm planning on spending my other time on music, some college-searching, and re-starting my jewelry business. I had mostly focused on chain-maille over the last few years. I still have a lot of that inventory. I want to combine these new bracelets with chain maille, and do art shows and things again.
This may be crazy, but I really want to do it.
Other exciting thing...
I got chemo yesterday! FINALLY.
I got another blood test on Monday. Not high enough. I think the problem counts had even gone down. If they hadn't really gone up a lot by Wednesday, I was going to have to get a bone marrow test on Thursday.
Went in for labs at 8:30 Wednesday morning. Got a phone call several hours later from Margaret (one of the Nurse Practitioners, she's been really involved with all of this, and she's really awesome). She was so excited. They'd come up!!! I could get chemo that day!
So we drove back to clinic Wed. afternoon, and I got the whole lot: Doxorubicin, Dexrazoxane, Vincristine, and E-coli Asparaginase.
I spent that time in clinic working on another bracelet. (That was where the commissions came from, especially from Laurie, the other NP.)
And so far, after this chemo I've felt fine. A little ickier, but not too bad.
Some of us teens at TLC are planning on a little tour of the hospital sometime soon. Some of it including the tunnel, and the painting, and maybe a trip up to 41400 to say hi to the nurses.
Ooooh we got an apartment up here! We haven't moved in yet though, the landlady wants to fix it up some more first. And she said that I can paint my room whatever color I want. And I want to paint it bright, with different walls being different colors. Excited.
It's a cool little apartment. It's on the second floor of an oldish house right in Rochester, and the best thing is that there's a room up on the third floor that we get too. That'll be good if the downstairs people are noisy, or if we bug them too much with our playing tunes at strange hours, and me doing foot-percussion (it'd probably sound like the ceiling was about to cave in).
It's all wood, and simple, and has potential for being colorful and cozy.
My hair started growing back. Not drastically. There's just a shadow that's consistent instead of patchy, where my hair would be. And it's soft now, instead of occasionally prickly. But it's gonna get knocked out again. :P
I've been reallllly liking being bald. I'm totally used to it. It's ridiculously easy to take care of non-existent hair, and it feels so good. But hahaha I was cracking up so bad when we went into a hair salon for my mom. I did NOT ask for a haircut, much as I was dying to.
And I have an appointment in less than 9 hours, and I need to sleep.
G'night!
And NBTSCers, I missed you all a lot this week, and wished I was there at Camp Myrtlewood, seeing your lovely faces. But hopefully I'll be able to make it next year. :)
Monday, August 17, 2009
Address Change and a Little Extra
Soooo.
Sorry for the long lack of posts! I'm getting back into writing, though...
There were a couple of things I wanted to post soonish, but I was trying to get a full post along with them. Well, that part is taking me forever, so I'll just start with this...
My address has changed, so if you would like it, e-mail/message me. :) My e-mail: nadine@nbtsc.org
Yeah.... It's changed a lot. At this point we're looking for something a bit longer lasting (in Rochester), but for the summer (which we weren't planning to spend in Rochester) that's how it's been.
It's pretty awesome, though, 'cause I'm staying in an apartment in the Kanack School of Music. Yeah!
Anyway... I have been enjoying a week-long delay in my chemo, since my counts hadn't come up enough to start the next cycle on time. I went contra dancing TWO WEEKS IN A ROW, and had a blast!
There's a lot of stuff to write about, but the tasty smells of dinner are wafting up to my room, and I think they get my attention first. :)
Sorry for the long lack of posts! I'm getting back into writing, though...
There were a couple of things I wanted to post soonish, but I was trying to get a full post along with them. Well, that part is taking me forever, so I'll just start with this...
My address has changed, so if you would like it, e-mail/message me. :) My e-mail: nadine@nbtsc.org
Yeah.... It's changed a lot. At this point we're looking for something a bit longer lasting (in Rochester), but for the summer (which we weren't planning to spend in Rochester) that's how it's been.
It's pretty awesome, though, 'cause I'm staying in an apartment in the Kanack School of Music. Yeah!
Anyway... I have been enjoying a week-long delay in my chemo, since my counts hadn't come up enough to start the next cycle on time. I went contra dancing TWO WEEKS IN A ROW, and had a blast!
There's a lot of stuff to write about, but the tasty smells of dinner are wafting up to my room, and I think they get my attention first. :)
Saturday, July 18, 2009
Cheated of Cucumbers! And Other Stories
This post is broken up a bit, because I actually started writing it a while ago. But finally I came back to it. And I apologize for taking so long.
---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".
----------------
Continued on July 4th
----------------
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.
----------------
Continued on July 18th
----------------
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-the-room chair, which was able to be converted into a full-length bed.
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.
---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".
----------------
Continued on July 4th
----------------
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.
----------------
Continued on July 18th
----------------
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.
Sunday, June 28, 2009
Cool Night Air Does Wonders On a Bare Head
Now that I've posted last night's post, I can write one for today.
I'm using the one computer here, and the keyboard is really loud. I'm hoping that I'm not keeping anyone awake.
Anyway, being out of the hospital has been WONDERFUL.
Today was relaxed, and just nice. We worked on the puzzle for a while, and hung out. Played Settlers of Catan.
Peggy Popp, the weekend home-care nurse, came today. We went over which meds I need to take when, which ones are compatible with each other, and so forth. And she checked my vitals ('cause I missed that real bad), and we talked about how my heart rate has been going up randomly, even when I'm not really doing anything. So far, no worries, though if it gets higher than 120 bpm (which it was at earlier today), I should call.
Then she changed the stuffing in the hole in my chest. It was uncomfortable, but not unbearable. And now it's all fresh and nice.
I've met a few of the other families who are staying here. Haven't really talked to any of them a lot, but they all seem very nice.
There are about 8 little girls running around, though I'm not sure they're all together. It's sweet.
I've gotten used to throwing on my mask everytime I walk into a room with people I don't know.
Today I was sitting on a couch, trying on scarves, and this lady started giving me techniques for pinning them on without ruining the fabric (I hadn't even thought about pinning them, and I'd have been too nervous to anyway). It was really cool.
All five of us (Mom, Dad, Erek, Kate, and I) took a trip to Goodwill. I hardly fit into any of my clothes anymore, because I ended up losing a scary amount of weight during my month in the hospital.
Then, we went to the mexican restaurant again. And again, it was amazing.
At around 9:30 this evening, we decided to take a walk down the bike trail that runs along the Erie Canal, right behind the RMH.
It was SO nice. The air was cool, but not too cold, and it was really nice walking in the dark. We walked quite a ways, at a good pace. My legs were still a little stiff, especially at my ankles. I did some stretches today, though. I still don't think I can run, which is kind of scary.
Anyway, I'm really tired. This whole sleep thing is weird. I can't get to bed before 3 AM, and I can't sleep later than around 6:30. But I'm going to try (I'm too late for getting to bed before 3 this time, but I'm going to try to to do better tomorrow).
Ok, g'night.
I'm using the one computer here, and the keyboard is really loud. I'm hoping that I'm not keeping anyone awake.
Anyway, being out of the hospital has been WONDERFUL.
Today was relaxed, and just nice. We worked on the puzzle for a while, and hung out. Played Settlers of Catan.
Peggy Popp, the weekend home-care nurse, came today. We went over which meds I need to take when, which ones are compatible with each other, and so forth. And she checked my vitals ('cause I missed that real bad), and we talked about how my heart rate has been going up randomly, even when I'm not really doing anything. So far, no worries, though if it gets higher than 120 bpm (which it was at earlier today), I should call.
Then she changed the stuffing in the hole in my chest. It was uncomfortable, but not unbearable. And now it's all fresh and nice.
I've met a few of the other families who are staying here. Haven't really talked to any of them a lot, but they all seem very nice.
There are about 8 little girls running around, though I'm not sure they're all together. It's sweet.
I've gotten used to throwing on my mask everytime I walk into a room with people I don't know.
Today I was sitting on a couch, trying on scarves, and this lady started giving me techniques for pinning them on without ruining the fabric (I hadn't even thought about pinning them, and I'd have been too nervous to anyway). It was really cool.
All five of us (Mom, Dad, Erek, Kate, and I) took a trip to Goodwill. I hardly fit into any of my clothes anymore, because I ended up losing a scary amount of weight during my month in the hospital.
Then, we went to the mexican restaurant again. And again, it was amazing.
At around 9:30 this evening, we decided to take a walk down the bike trail that runs along the Erie Canal, right behind the RMH.
It was SO nice. The air was cool, but not too cold, and it was really nice walking in the dark. We walked quite a ways, at a good pace. My legs were still a little stiff, especially at my ankles. I did some stretches today, though. I still don't think I can run, which is kind of scary.
Anyway, I'm really tired. This whole sleep thing is weird. I can't get to bed before 3 AM, and I can't sleep later than around 6:30. But I'm going to try (I'm too late for getting to bed before 3 this time, but I'm going to try to to do better tomorrow).
Ok, g'night.
Whoahhh, Out Of the Hospital
**Note: I actually wrote this early yesterday morning (June 27th). Couldn't post it until now.**
Well, I’m out of the hospital!
I’m sitting in the dark, at 2:30 AM, at a table in the kitchen of the Ronald McDonald House (RMH). It’s kind of like a youth hostel, but for people with family members who are in the hospital, and Eric managed to wangle us a room. It’s where my family has been staying over the past month.
It’s a really nice place. There are comfy couches scattered all over the place (I’m not in one right now because I’m having a snack, and food isn’t allowed on the couches), and the kitchen is gorgeous. Our room is sweet, with musical instruments bordering the walls.
Anyway, there’s been a change in plans. Or, I guess Dr. Bruckner never completely decided on how the next week is going to go.
I’m going to go ahead and get chemo-nasties this Tuesday. Which means being re-admitted this Tuesday. Only 3-ish days out of the hospital, then.
I’m going in to get blood drawn in clinic on Monday. Then, on Tuesday I will get a bone marrow biopsy, something injected into my spinal fluid, and a “Pick Line” (not sure that’s how they spell it, I’ve never seen it written) inserted.
The “Pick Line” is, to my understanding, like a super IV. It goes into a vein in my arm and threads all the way up to near my shoulder. Weird! Normally they put it in while the person is awake (I hear it’s not that bad), but since they’re giving me sleeping potion for the biopsy anyway, they’re going to do it then. The line can last over 6 weeks, which is awesome, and they’ll be able to use it for the chemo. But apparently I might be able to feel it in my arm, unlike an IV. Well, I guess it sort of is going to be all the way in my vein.
We still haven’t resolved this port business. And we have time to decide, since nothing is going to be put in this week anyway. Gahhh, it would have been so nice just to have been able to keep my old port in. I LIKED it, it was working, and it was nice to me.
My cytogenetic (sp?) results (not sure that’s the right terminology) finally came back (it’s been about a month). I hadn’t mentioned it, I didn’t know much about it. Anyway, they came out good. My parents were INSANELY relieved. I didn’t realize it was that serious.
Moving out was an operation, but really not that bad. Erek and I packed up a lot Thursday night. It took a long time to get out today though, because of all the stuff that had to happen.
My nurse, Emily (who is very very awesome), wanted to make sure that my stuffing was ok, and we thought it was a good idea to have Beth, the wound care lady who came to change my dressing on Thursday, come and look at it again. So she came, and I was sure she would want to change the stuffing before I left. But she said it looked fine, and I was very happy about that.
Then Emily went over a sheet with an overview of my stay, diagnosis, everything that had happened (there was a decent list of scary stuff that had happened, and I have it, and I might type it up. I find it really interesting) with us.
We also went over all of the medicine that I will have to take while I’m an out-patient. Looong list. Later, I made a chart for myself to make sure I keep track of what pills I’ve already taken throughout the day. Uncharacteristically organized of me. :P Also, we’re going to get a pill box.
There was a doctor party, which doesn’t happen quite as often anymore (usually it’s just two or three of them who come in and talk to us in the morning). We asked some questions, got them answered, and I talked to Dr. Norman a little bit, which was nice. She’s really sweet.
Finally, I was really anxious to leave.
We had lunch there. It took us until about 3:30 to get out.
I went to the nurse’s station and said some more goodbyes, though I’m going back in 3-ish days, so it wasn’t really goodbye.
Once we left my unit, we had to go down to the pharmacy to pick up my Prednisone, which they had forgotten to order with my other meds.
I hadn’t ridden in a car for over a month. It was strange strange strange. But not too unfamiliar. We opened all the windows, and the wind blew on my bare head. It was wonderful.
Freeeeeeee!!!!!!!!!!!!
We drove straight to the RMH. Mom and Erek gave me a tour.
We went outside, and started to walk to the Mexican restaurant, which I had been wanting to go to for about 3 weeks. Then I realized that I needed to get together my meds, and figure out what needed to be taken when. I had a few questions about today’s doses, because a few had been missed while we were packing up. It took a while to get through to a doctor and figure it all out. But finally we made it to the restaurant.
It was SO GOOD. The owner was really nice, and mom chatted with him in Spanish for a while. We instantly loved it there. And there weren’t really any other people there, so I didn’t have to worry about wearing a mask (which would have been tricky to eat with).
When we got back to the RMH, Dad and Sue were both there. It was awesome seeing them.
This evening was sweet and relaxed. After a while Mom took a nap, and Dad, Erek, and I started a 1000 piece puzzle. But we soon discovered that there was part of ANOTHER puzzle mixed in (the pieces were significantly different, both in style and texture, so it wasn’t hard to separate them). Haha, we started to do both, and then realized that one of them was incredibly incomplete.
Later we discovered more pieces from a different puzzle altogether.
We decided to go rent a movie, before picking up Kate from the airport (her plane was coming in at around 10:30).
So we all piled into the Cabriolet (dad found this old black convertible somewhere a while ago, and it’s really awesome), and drove through the warm evening with the top down.
Picked up Kate (yay!!!), and drove home. We watched The Royal Tenenbaums.
And then we went to bed, and I couldn’t sleep, so I came out here with the laptop.
There is no wireless here, so I’m typing this offline. I’ll try to find a way to post it tomorrow.
Well, I’m out of the hospital!
I’m sitting in the dark, at 2:30 AM, at a table in the kitchen of the Ronald McDonald House (RMH). It’s kind of like a youth hostel, but for people with family members who are in the hospital, and Eric managed to wangle us a room. It’s where my family has been staying over the past month.
It’s a really nice place. There are comfy couches scattered all over the place (I’m not in one right now because I’m having a snack, and food isn’t allowed on the couches), and the kitchen is gorgeous. Our room is sweet, with musical instruments bordering the walls.
Anyway, there’s been a change in plans. Or, I guess Dr. Bruckner never completely decided on how the next week is going to go.
I’m going to go ahead and get chemo-nasties this Tuesday. Which means being re-admitted this Tuesday. Only 3-ish days out of the hospital, then.
I’m going in to get blood drawn in clinic on Monday. Then, on Tuesday I will get a bone marrow biopsy, something injected into my spinal fluid, and a “Pick Line” (not sure that’s how they spell it, I’ve never seen it written) inserted.
The “Pick Line” is, to my understanding, like a super IV. It goes into a vein in my arm and threads all the way up to near my shoulder. Weird! Normally they put it in while the person is awake (I hear it’s not that bad), but since they’re giving me sleeping potion for the biopsy anyway, they’re going to do it then. The line can last over 6 weeks, which is awesome, and they’ll be able to use it for the chemo. But apparently I might be able to feel it in my arm, unlike an IV. Well, I guess it sort of is going to be all the way in my vein.
We still haven’t resolved this port business. And we have time to decide, since nothing is going to be put in this week anyway. Gahhh, it would have been so nice just to have been able to keep my old port in. I LIKED it, it was working, and it was nice to me.
My cytogenetic (sp?) results (not sure that’s the right terminology) finally came back (it’s been about a month). I hadn’t mentioned it, I didn’t know much about it. Anyway, they came out good. My parents were INSANELY relieved. I didn’t realize it was that serious.
Moving out was an operation, but really not that bad. Erek and I packed up a lot Thursday night. It took a long time to get out today though, because of all the stuff that had to happen.
My nurse, Emily (who is very very awesome), wanted to make sure that my stuffing was ok, and we thought it was a good idea to have Beth, the wound care lady who came to change my dressing on Thursday, come and look at it again. So she came, and I was sure she would want to change the stuffing before I left. But she said it looked fine, and I was very happy about that.
Then Emily went over a sheet with an overview of my stay, diagnosis, everything that had happened (there was a decent list of scary stuff that had happened, and I have it, and I might type it up. I find it really interesting) with us.
We also went over all of the medicine that I will have to take while I’m an out-patient. Looong list. Later, I made a chart for myself to make sure I keep track of what pills I’ve already taken throughout the day. Uncharacteristically organized of me. :P Also, we’re going to get a pill box.
There was a doctor party, which doesn’t happen quite as often anymore (usually it’s just two or three of them who come in and talk to us in the morning). We asked some questions, got them answered, and I talked to Dr. Norman a little bit, which was nice. She’s really sweet.
Finally, I was really anxious to leave.
We had lunch there. It took us until about 3:30 to get out.
I went to the nurse’s station and said some more goodbyes, though I’m going back in 3-ish days, so it wasn’t really goodbye.
Once we left my unit, we had to go down to the pharmacy to pick up my Prednisone, which they had forgotten to order with my other meds.
I hadn’t ridden in a car for over a month. It was strange strange strange. But not too unfamiliar. We opened all the windows, and the wind blew on my bare head. It was wonderful.
Freeeeeeee!!!!!!!!!!!!
We drove straight to the RMH. Mom and Erek gave me a tour.
We went outside, and started to walk to the Mexican restaurant, which I had been wanting to go to for about 3 weeks. Then I realized that I needed to get together my meds, and figure out what needed to be taken when. I had a few questions about today’s doses, because a few had been missed while we were packing up. It took a while to get through to a doctor and figure it all out. But finally we made it to the restaurant.
It was SO GOOD. The owner was really nice, and mom chatted with him in Spanish for a while. We instantly loved it there. And there weren’t really any other people there, so I didn’t have to worry about wearing a mask (which would have been tricky to eat with).
When we got back to the RMH, Dad and Sue were both there. It was awesome seeing them.
This evening was sweet and relaxed. After a while Mom took a nap, and Dad, Erek, and I started a 1000 piece puzzle. But we soon discovered that there was part of ANOTHER puzzle mixed in (the pieces were significantly different, both in style and texture, so it wasn’t hard to separate them). Haha, we started to do both, and then realized that one of them was incredibly incomplete.
Later we discovered more pieces from a different puzzle altogether.
We decided to go rent a movie, before picking up Kate from the airport (her plane was coming in at around 10:30).
So we all piled into the Cabriolet (dad found this old black convertible somewhere a while ago, and it’s really awesome), and drove through the warm evening with the top down.
Picked up Kate (yay!!!), and drove home. We watched The Royal Tenenbaums.
And then we went to bed, and I couldn’t sleep, so I came out here with the laptop.
There is no wireless here, so I’m typing this offline. I’ll try to find a way to post it tomorrow.
Friday, June 26, 2009
Last Night Here?!
Well. This is my last night in the hospital. That's a really scary thought. Today was around my 30th day here.
I took down all of the posters and cards from the walls this evening, since I'm leaving in the morning. It was definitely sad. I've been living here for the last month, and I didn't really mind it all that much. I tried to make it my own space, and in doing so, I became a little attached to it.
Not that I MIND getting out, it's just... strange.
Yesterday morning I got my port taken out. They rolled me, on my bed, over to the PICU, which is where they do stuff like bone marrow biopsies and spinal taps. And also remove ports. The surgeon who put it in was the one who removed it. They gave me the same white sedative that they used for the spinal taps. But first they gave me a little bit of clear stuff, and it made me feel really strange. For about 5 minutes, while they got stuff ready, I sat there feeling kind of loopy, almost like I was floating. Then they gave me the white stuff.
I woke up portless, with two IVs in my left arm. I had a huge wad of fluffy gauze stuck to my chest, with a clear bandage over it.
I was free of Winnifred after while, so Erek and I went and explored some more of the hospital. We were trying to find the tunnel again, so that I could show it to him, and also so we could take pictures. But we never found it.
We power walked through the halls, and outside.
It's weird, I'm having a really hard time remembering what else I did yesterday.
Rosie, the music therapist, came in the afternoon, and we did some really cool relaxation stuff.
Later, Tom and Hope came and played fiddle and guitar in my room. It was one of the most wonderful things that has happened while I've been here. I felt so alive as they played.
The decision making process for what to do about this port business has been very interesting. I'm going to try to get it as accurate as I can, but I can't promise. There was a LOT of information given.
Dr. Salloum, the surgeon, was very set on the idea of putting a Broviak in next week.
But yesterday we talked with Dr. Mullen, the oncologist who diagnosed me in the first place, and he had another option. He thought that we could use regular IVs for the next week, waiting until a good time to put in another port on the other side.
Today we had a conference with Dr. Bruckner, my main oncologist. She hadn't talked face-to-face with Dr. Salloum yet, and so she couldn't understand why he was so against putting in another port. Apparently, he REALLY didn't want to, he thought that it wouldn't work again. She said she'd try to talk to him today. She wants to go ahead and use IVs next week, postpone chemo for a week so the port-removal site can heal, and so the new port can sit and heal for a week before use.
So I'm actually planning on being out of the hospital for 10-ish days, instead of 3, before I come in for the 5 day intensive chemo.
Then we all asked a lot of questions of Dr. Bruckner, mostly about being an out-patient. I asked about what kind of places I should stay away from (sickness, basically. I have to try not to get the flu. I probably will have to wear a mask when I'm around lots of people). And if I could get a henna tattoo on my head (Kate is coming this weekend, and she's bringing henna!). Answer is yes!
Today, the hole where my port was was re-stuffed. A wound care lady came, and put this felt stuff with silver (silver!) in it into the hole. I won't give details, lets just say it was, and is, very strange looking. Not pleasant at all. I think it will only have to be re-stuffed a few times a week. Ugh, though.
The Zendarskis came to visit, and so did the Waymans. I gave a little tour of this floor, and we all hung out on the playdeck for a bit, playing air hockey and sitting outside. 'Twas fun.
I've been hugging and saying goodbye to all of the nurses I've had since I've been here. I love them so much! Every single one is so sweet, and I'm going to miss them. But I'll be back, and I can visit anyway, when I come in for clinic.
I stocked up on Mickey Mouse masks, when Cheryl came in to say goodbye. She suggested using them as slingshots. :D
Anyway, Erek is staying here. We packed up most of my room this evening, and now we're watching movies and eating soup. Why sleep during my last night in the hospital? :P
I took down all of the posters and cards from the walls this evening, since I'm leaving in the morning. It was definitely sad. I've been living here for the last month, and I didn't really mind it all that much. I tried to make it my own space, and in doing so, I became a little attached to it.
Not that I MIND getting out, it's just... strange.
Yesterday morning I got my port taken out. They rolled me, on my bed, over to the PICU, which is where they do stuff like bone marrow biopsies and spinal taps. And also remove ports. The surgeon who put it in was the one who removed it. They gave me the same white sedative that they used for the spinal taps. But first they gave me a little bit of clear stuff, and it made me feel really strange. For about 5 minutes, while they got stuff ready, I sat there feeling kind of loopy, almost like I was floating. Then they gave me the white stuff.
I woke up portless, with two IVs in my left arm. I had a huge wad of fluffy gauze stuck to my chest, with a clear bandage over it.
I was free of Winnifred after while, so Erek and I went and explored some more of the hospital. We were trying to find the tunnel again, so that I could show it to him, and also so we could take pictures. But we never found it.
We power walked through the halls, and outside.
It's weird, I'm having a really hard time remembering what else I did yesterday.
Rosie, the music therapist, came in the afternoon, and we did some really cool relaxation stuff.
Later, Tom and Hope came and played fiddle and guitar in my room. It was one of the most wonderful things that has happened while I've been here. I felt so alive as they played.
The decision making process for what to do about this port business has been very interesting. I'm going to try to get it as accurate as I can, but I can't promise. There was a LOT of information given.
Dr. Salloum, the surgeon, was very set on the idea of putting a Broviak in next week.
But yesterday we talked with Dr. Mullen, the oncologist who diagnosed me in the first place, and he had another option. He thought that we could use regular IVs for the next week, waiting until a good time to put in another port on the other side.
Today we had a conference with Dr. Bruckner, my main oncologist. She hadn't talked face-to-face with Dr. Salloum yet, and so she couldn't understand why he was so against putting in another port. Apparently, he REALLY didn't want to, he thought that it wouldn't work again. She said she'd try to talk to him today. She wants to go ahead and use IVs next week, postpone chemo for a week so the port-removal site can heal, and so the new port can sit and heal for a week before use.
So I'm actually planning on being out of the hospital for 10-ish days, instead of 3, before I come in for the 5 day intensive chemo.
Then we all asked a lot of questions of Dr. Bruckner, mostly about being an out-patient. I asked about what kind of places I should stay away from (sickness, basically. I have to try not to get the flu. I probably will have to wear a mask when I'm around lots of people). And if I could get a henna tattoo on my head (Kate is coming this weekend, and she's bringing henna!). Answer is yes!
Today, the hole where my port was was re-stuffed. A wound care lady came, and put this felt stuff with silver (silver!) in it into the hole. I won't give details, lets just say it was, and is, very strange looking. Not pleasant at all. I think it will only have to be re-stuffed a few times a week. Ugh, though.
The Zendarskis came to visit, and so did the Waymans. I gave a little tour of this floor, and we all hung out on the playdeck for a bit, playing air hockey and sitting outside. 'Twas fun.
I've been hugging and saying goodbye to all of the nurses I've had since I've been here. I love them so much! Every single one is so sweet, and I'm going to miss them. But I'll be back, and I can visit anyway, when I come in for clinic.
I stocked up on Mickey Mouse masks, when Cheryl came in to say goodbye. She suggested using them as slingshots. :D
Anyway, Erek is staying here. We packed up most of my room this evening, and now we're watching movies and eating soup. Why sleep during my last night in the hospital? :P
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