June 15, 2009
TUESDAY!!!!!!!!!!!
That’s right, folks. I’ve been officially cleared to go home this tuesday! My meds have been switched over to pill form so no more IV drugs. This is just the beginning of the long road to recovery but at least I’ll be home! There’s alot of work to do but I can say goodbye to nasty hospital gowns!!!
More details to come later =)
June 10, 2009
Doc had great news today! They had switched me to a different drug that wouldn’t attack my own blood cells and it seems to be working!! Plus, that old drug had been doing bad things to my kidneys and and it seems to be resolving itself with this new one. So they are extremely pleased with these results! Also, they were concerned that the drug I’m on to treat my fungal pneumonia would attack my liver but that seems to be a-ok as well. All this points to…..me leaving soon!!!!!!!!! Like, hopefully next week! I’m trying not to get my hopes up but I can’t help but be beyond thrilled! I will obviously keep you all posted! HAPPY DAYS!
In other news, I took a real shower today instead of these awkward bed baths. Occupational therapy has been absolutely fantastic with me. I can do all of my bathroom activities IN the bathroom now. Maybe I should explain the difference between Occupational therapy versus Physical therapy. Occupational therapy focuses on the daily activities – brushing teeth, putting on socks, sitting on a toilet, the day-to-day functions. Physical therapy helps rebuild your personal strength so it’s alot of walking, stretching and exercising. I’ve been in bed-ridden for quite some time so I’ve definitely suffered from muscle atrophy.
So today was a pretty darn good day!
June 7, 2009
Another eventful day, especially since it’s the weekend. First off, the doc on call this weekend is this Chinese guy who I never heard of and looks like he’s 20 but he explained everything very patiently and in small words w/o sounding condescending. So I have been on TPN which is basically been my food in IV form but now that I’m eating on my own (or rather my mom’s been cooking me food) they’ve decided to stop it all together! Less fluids means less swollen…yay!!! I’ve already lost about 15 lbs but I’ve still got a bit to go….
Part of the gazillion side meds that I’m on are steroids which help control the GVHD but also have a wonderful side effect of jacking up my sugar levels. So much so that they suspect that I probably have diabetes now which SUCKS b/c I have a mean sweet tooth. So now I have to learn how to check my sugar levels before every meal….I guess I won’t be able to guzzle down that liter of root beer after all. Tis ok…whatever gets me outta here.
The doc suspects that 1 drug might be having this weird but not yet serious side effect where it’s destroying my own blood cells which is why I’m constantly needing either blood or platelets. He’s switched me to a different drug which should hopefully not be so damn destructive.
I recently had another chest CT scan which shows a tiny bit of fungal pneumonia so I’m back on this other drug, Posaconazole (the only drug I’m familiar with b/c I was on it as an out-patient and yes, it costs over $1g for 1 bottle so it took some time for my insurance to finally approve it).
To my parents and my surprise, the doc decided to take out my foley catheter (it basically is a tube that takes out the pee for me). I’m a bit nervous since I’ve had it for quite a while but the the longer you have any sort of tubes in you, the higher chance you have of getting some sort of infection, such as an UTI which I definitely do NOT want to be going through right now so good riddance catheter!
I’ve been slowly gaining back my strength which is such an accomplishment for me. From just a few weeks ago of being bed-ridden in an ICU unit to where I can ALMOST get out of bed on my own…wowzahs. I’m no longer completely useless. Instead of having someone brush my teeth or wipe my mouth, I get out of bed, walk to the bathroom with a walker, stand and clean myself like a normal person. It really is such a great feeling to slowly adjust back to normal functions.
Oh yeah, if anyone knows how to get full episodes of Top Chef, that would be greatly appreciated. I’ve been ghetto and watching project runway episodes on youtube but they are in 8min increments so there’s a TON of clicking and interuptions. I’ve watched 4 seasons of project runway like this too! I don’t know if the Top Chef seasons are even out on DVD yet…just thought I’d ask. I’ve been watching Entourage, 30 Rock and just got into Weeds. I have netflix too which helps (mucho thanks again, Janet!)
June 4, 2009
So I had an eventful morning today. Occupational therapy came by as she always does and we are working on getting me into the bathroom doing more of my daily hygiene in there rather than in my bed or in a chair since it’s difficult to stand up for that long. Anyways, we got me sitting on a commode (I’ll spare you the details) and all of a sudden I fainted. Thank goodness someone was w/ me cuz my head would’ve just gone flying backwards. Anyways, 5 nurses later, a visit from a resident who said I had a minor seizure (whatever) and about 4 hours of resting I’m feeling better. But I was petrified of being sent back to the ICU which clearly has not happened nor will it.
They have been tapering off my IV meds into pill form which is promising. I’ve been eating more despite some vicious vomitting episodes. The more I assume a “normal” life in here, the faster I can actually get out and live that “normal” life.
I’ve been super emotional lately…crying at the drop of a dime, acting like a baby, snapping at everyone (sometimes at the nurses too….i know, bad wincheng). Gotta snap out of it…alot of this is mental and I know there are alot of people routing for me to stay positive.
In lighter news, even though I have zero appetite, I have these weird food cravings for EVERYTHING. I want to eat everything under the sun or more specifically…I want everything that’s been on TV….pizza hut, taco bell, subways, you name it. pathetic! But there are def still local foods i’m craving so you all better be ready to eat with me!
May 29, 2009
So the doc says that my GVHD might be slowly heading under control which is fantastic news! Plus, if I keep eating, they might take me off of this artificial nutritional IV drip. One less IV is good news to me. I actually don’t have as much crap on my IV machine as I used to which is a good sign as well.
I am still swollen to hell. The docs are giving me this drug that is supposed to help take off all this extra weight but it’s not working that well. Quite uncomfortable.
I’ve been working with occupational/physical therapy everyday to rebuild my strength. It’s amazing how we take advantage of standing, sitting, even walking. I am envious of the days when it was obviously just no big deal. But everyday I build up my strength so I will be out and about soon enough.
On a random now, I’ve been getting into Everybody loves Raymond. Don’t laugh. I think it’s good simple humor. It could also be that I don’t get BravoTV here but until then, I’m enjoying my stupid simple sitcom!
May 27, 2009
The results of my most recent bone marrow biopsy show that I am 100% engrafted with 1 of the cord bloods!!! Excellent news! So the transplant worked but now I am suffering from some GVHD which the docs are trying to maintain with a cocktail of drugs…let’s hope it works. Like they’ve been telling me, it’s a marathon, not a sprint. yeah yeah yeah…….
It’s hard to rest at night…or even during the day. As Winchee wrote before, hospitals are not meant as places to get better, they are places to be treated. Extremely frustrating but what can you do.
I am retaining ALOT of water. Due to the steroids as well as the slew of other drugs they’re giving me. It’s quite disheartening to see my body so bloated (not that I was obsessed with my body) and it’s also quite painful.
I went to a hearing doctor today because everything sounds muffled and it was a bit disconcerting. Again, the diagnosis: fluid. DUH! The hearing doc is gonna prescribe some med that should help release this fluid but I have a feeling the fluid in my ear is related to the excess fluid everywhere else in my body. Nice try, doc.
I kind of miss being in the ICU. Weird, right? First, it’s a 1:1 patient nurse relationship so any problems I have were attended immediately. Plus, I could see more of what’s going on which is alot better than up here in my isolated room. I guess I need as much stimuli as I can get.
Other than that, my thoughts have been going out to a fellow cancer patient who is going through some hard times right now. You’re in my thoughts, Michelle.
May 21, 2009
So I’ve been switched into another room up here. They’ve treated us really well up here so I can’t complain about the staff. I am supposed to be getting a colonscopy today because they are concerned about all my stomach pains. Howevr that was at 9am and it is now almost 3PM!
In the meantime, I’ve been watching movies and craving my v8 fusion, root bear and sunkist! Weird cravings i know but i never said i was normal!
Otherwise my counts are coming in and hope to be outta here in a couple more weeks. I have some serious muscle atrophy which I work on everyday with both Occupational and Rehap therapy. Oh yeah, and getting my bi-weekly massages help!
I know there’s alot going out theree and I hope to rejoin all you fools soon enough. Love you all.
May 19, 2009
Finally out of the ICU. I dont even remmeber being rushed down therer but I do remember it being the scaries thing i’ve ever had to go through. They took excellent care of me and there is a fantastic 1:1 patient to nurse ratio so help isn’t too faar away. We were there for about 2 weeks and they finally brought me back upstairs yesterday. No fevers, no vomitting but some serious diarhhea. Docs think it might be just GVHD so only tests will tell.
I’ve been somewhat consumed with my own depression which is why I’ve been MIA. Sorry folks but drinking juice and getting cleaned up get draining after a while.
I had a bone marrow biopsy yesterday so we’ll get the results and see what the doc says. Oh yeah, I used to be hooked up to at least 5 different fluids but now I’m only hooked up to 3! Progress here we come!
I will definitely let you all know when I’m up for visitors but it might not be for a while. Oh yeah, I’ve been craving TONS of rootbeer and V8 Fusion. Odd, I know! Make it happen, cqpn!
Love you all,
Winbotz
May 12, 2009
Wincheng finally had bowel movements today!!!!! Can’t believe how excited we get over poo, but this is great news. Hopefully her abdominal pains will disappear and her breathing will be easier with all this great new lung space. The swelling on her arms have decreased significantly, so more great news. I know these are Baby steps, but we’ll take them. She did have to go on a different oxygen machine this am which is giving her more O2, but makes hearing her speak more difficult. We came up with a good system though. She either spells the word out or she says each word very very slowly while we watch her lips and repeat what she said. She still smiles with this crazy mask on (awesome!). The difficult reality is that her body is very very tired and weak so breathing is extremely hard work for her. I think it would be easy to just stop breathing under these circumstances. BUT We all look her in the eye and tell her that she must keep breathing, keep fighting, keep trying. BIG DEEP breaths! Just breathe! Amazing what we take for granted when healthy. We don’t ever think about breathing because it’s automatic, let alone think that breathing is hard. Yesterday evening she deteriorated and was almost intubated. But, she was able to keep pushing through the night with the oxygen mask and even had slightly better blood work results this morning. Crazy how much changes in just a few hours. This morning she is stable. The best was seeing her huge smiles as she opened her eyes to find Winchee standing next to her bed.
May 11, 2009
Well, 24 hrs later and it feels like days have passed. Wincheng slept 4 hrs straight last night, which she really needed. Her skin is peeling from her hands in huge chunks as a result of the radiation. Mom and I have been giving her daily hand and feet massages with lots of lotion, so no dishpan hands for Wincheng. Today she had less confusion, was more alert and had several bursts of conversation, so better on this front. But her body just isn’t cooperating. Her WBC is still very low and has not changed (0.2); her kidneys are removing more fluid (aided by the diuretic), but they need to do more tests and continue monitoring to ensure her kidneys are doing their other very important job of pulling out toxins. Now they are monitoring her liver and hoping that the elevated bilirubin goes back down to normal levels. Again, more tests, monitoring and waiting. I can’t stand the waiting. I know the monitoring is important to determine the next course of action, but all this waiting is torture!!! Where’s the magic eight ball when you need it? Wincheng did give me some wonderful smiles today, so I know my beautiful sister is still fighting and positive. But of course she’s scared. Who wouldn’t be? This is so F’d up!!! She looked at me with her big brown eyes and said through her oxygen mask, “this wasn’t supposed to be this hard”…broke my heart all over again…been broken since she was first diagnosed two years ago. None of this was supposed to happen. I see people in their 80’s chain smoking without a care in the world. Why does Wincheng have to go through this? Why does she have to suffer? Why, why why?!!!
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