Home & Expectations

It was really hard to update in the hospital. Its BEEN hard to update. That willpower man. Even I couldn't bring myself to the computer many days. My Christmas was uneventful, I was feverish for days until I received steroids. I want to say 'I LOVE THOSE STEROIDS!', having been on prednisone in the past & this time some new steroid that made me feel better... BUT... it had its downfalls. This steroid, I forgot what it was called, made me very anxious, jittery to the point that I could not sleep unless I took Ativan before bed. The Ativan only lasted 3 hrs or so resulting in me tossing & turning in the middle of the night trying to go back to sleep on my own but failing & having to ask for more Ativan. It also made me feel like I was an emotional wreck. I was irritated easily, crying the next second, or freaking out. I only had to stay on it for 3 days. My New Years was also kind of uneventful in that I was overly exhausted and really only spent it with my husband and a little bottle of sparkling apple cider. I forced myself to stay up for the ball drop and then proceeded to sleep shortly after ignoring most calls and txt messages. I'm sorry about that, but through my worst days I ignored a lot of messages because I just wanted to sleep my miserable insides away.

I finally came home and I honestly didn't feel as great as I had hoped. That's what I get for having high hopes. Its just that, I'm still pretty weak. Although honestly I could be much worse, doctors say I was "ahead of the curve". I just don't like feeling so unlike myself. I nap a lot, I feel crappy a lot, and I just wait for this weakness to run its course. I can't do much about it but EAT and HYDRATE myself. I lack energy to walk much, let alone do much exercising right now. My counts are still on the low end, so until my body recuperates I'm going to be a sluggish mess. I'm not allowed to exercise hard but I can't exercise much anyway since there isn't any fuel in this tank right now. I plan to start a light exercise plan in the next week or so. I'm allowing myself to rest up for now...FOR NOW. I can't wait until I start feeling better and I can push my body again. Its going to be disgusting how I'll make my body change this year.

Now I know I said I would workout while I was in the hospital and YOU KNOW WHAT? I did my best. My first week in I exercised everyday practically, walking miles in the hallway and then some. During the middle of my stay (the peak worst) I slept the days away and honestly I can say I don't remember too much of it. The days felt long and torturous at the time, but now I just can't remember where the time went. Towards my last week I began to use my exercise bike more and walk around the room here and there. I wasn't allowed out of my room. I think I did great though. Try getting high dose chemo and doing anything at all! When I came home the first night I broke down and cried before bed because I was overwhelmed with so many emotions. I was free, in the bed I longed for, I still felt horrible, but I was still so grateful, and happy to lay next to my loving superhero husband. He never ONCE failed me, sure he aggravated me when he pushed me to do things on my own, to eat, to move, to drink, but he was my coach, he did everything right, with the right words, attitude, everything. Most of all I was overwhelmed in tears realizing I couldn't remember the worst of it. I think my brain put a protective block in my head because I try to recall the memories of me that second week and all I mostly remember are my visitors and the clock on my wall. I would stare at that thing waiting for the days to end for a new one to start and it felt like forever. 3 weeks later, here I am and why does it seem like it went by so fast now? I don't know. I'm glad the worst is over. I'm learning the tricks of what helps me feel better temporarily at least: food = energy, liquids = hydration, Ativan = when the nausea kicks in & food looks/smells too disgusting to eat. 

I will try to keep the positive attitude up though, just going through a minor rough patch expecting too much too soon. Like my stay in MSK, this too shall pass... quickly... Just need to be patient.

Fevers & Chills

Because he's the hero Nina deserves,
but not the one she needs right now.

The past few days have been filled with very high fevers and trembling chills. I found out yesterday I caught the rhinovirus, the common cold. Its so mild that I don't even notice it. I also started to develop a mild rash over my body. The fevers could be a result of the cold, or just SCT of my bone marrow trying to finally produce white,red, platelet, blood cells of its own. Today I learned my neutrophils were .2 so that is some encouraging news,

Now I'm not gonna go and claim Batman cured me of my fevers. But I just finished watching The Dark Knight Rises (yet again)... and when the nurse took my temperature during the movie everything was back to normal. I feel better too.

Was Too Sick To Post This Past Week

Here is a quick rundown of what I dealt with this past week.
A mix of strong nausea, extreme fatigue, shortness of breath, weakness, & just staying in bed.

Monday: Almost passed out after my shower. Nurses helped me. Head didn't feel right all day.
Tuesday: Head still throbbed. Threw up spit right before my stem cell transplant. SCT, uneventful- some cramps. Slept the day away mostly. Fever.
Wednesday: I got my first blood transfusion today. Santa came by with Carolers. Nausea continues...
Thursday: Husband donated platelets with my brother who donated blood. Throat starts acting up at night (mucosis begins). Pain in my esophagus. All I do is drink my food, can't eat anymore.
Friday: A really boring day, and of course felt terrible. Another fever. Got routine chest x-ray, everything ok.

I love my aunts <3

Saturday: Another boring day, still feeling terrible.
Sunday: A very good morning. My birthday, 2 aunts from Puerto Rico came for the day, my dad, my bro, his g/f, my other aunt, and my husband were here. I received my husbands platelets, throat starts to feel a bit better.
Monday: Received my brothers blood. Feverish all day since last night. Took a long nap, but feeling noticeably better in the evening. Another chest x-ray.

Day -3

Using the computer.

Today felt a little lonely in the morning because I sent my husband home last night, I wanted him to get a good nights sleep. I kept myself busy doing my usual routines of exercise and I drew some motivational words to put up on my walls. I also decided to use a streaming webcam so that anyone can see me through a browser instead of having people download programs like Oovoo or Skype if they don't want to. My husband and my friend came by in the evening and we hung out, it really made me happy :)

If you want to watch what its like to live in a room for 3-4 weeks check out my live NON XXX webcam here: http://tinychat.com/chiquitabanina

Exercise: 3mile walk, 20 squats

Not Ready

My blood work from Friday was even worse than the blood work from last Wednesday. I noticed I felt my weakest on Saturday, so I assume that is when it sunk to its lowest. Yesterday I started to feel noticeably better. This morning I feel 90% which is GREAT. Unfortunately my blood count is still on the low end but the nurses today told me my counts were headed up. This means that my scheduled Stem Cell Donation (to myself) appointment was cancelled today and I have to come back tomorrow. They said I should be good to go tomorrow. Its amazing how they can predict that. Until then I was told to keep a high calcium diet. This prevents the possibility of light-headedness and nausea that can occur during the Stem Cell Donation process. I've been prepping my body this past week by receiving Neupogen shots (white blood cells) to the  back of my arm. It sucks every time, each morning, when my husband pinches my skin and injects me. Let me tell you, you do NOT get used to needles the more you get them. There is no getting used to that! I have to close my eyes cringing and humming songs to distract myself each time.

Oh my picture from Friday was posted on a radio stations page and it got over 400,000 likes! Thats cray!!! I can't believe so many people all over the country saw --> my big bald head! ^_^

Finally Updating

I know I look terrible lol,
but what can you expect?

Its been very rough theses past few days. I'm too tired to even update, but Rick pushes me when I need to go the extra mile. Yesterday my aunt & uncle came to visit, they are so sweet and good to me, going above and beyond to make sure I'm happy. I got 3 balloons (one was Batman), I got soo many roses, can't even count, & my aunt who is a nurse even got me a portable little blood pressure/hr monitor gadget. I was really exhausted all day but I dont like to just lay in bed when I have company over :\

My visiting nurse came in the evening to change the dressing on my catheter, and not long after my mom came over too. It was a full house, very nice, but at the same time overwhelming for me. By the time my mother left I was beyond spent. I try to be strong in the company of others, especially my family but that alone is exhausting enough and I end up breaking down when everyone leaves. My husband says I'm too concerned about everyone else's feelings, he says I need to let myself be sick and cared for right now. I'm afraid to upset everyone and let them see me at my weakest. I'm stubborn, I need to look strong! Keeping that image up has been hard lately. So I guess in this moment of weakness all I ask is just for your affections, love, care, thoughts, a joke, anything genuinely simple enough to make me smile for a second. I need your attention right now :\ it distracts me from nausea, it makes me feel better when now all I can do is lay in bed for days and wait this out.

Crappy Monday

Day 2 & 3 of ICE 2nd Cycle :(

Before:
 
I was feeling okay Friday morning up until my mini surgery to get a catheter put in my chest.
After:
Whatever medicine they gave me to knock me out, has been making making me feel very yucky. I have been very nauseous since yesterday then. I am too tired to do anything, I feel weak, and miserable to sum it up.

This video is of me still loopy after the mini catheter surgery & as I was talking to my husband he thought it would be funny to record my silly ramblings. (Hence the title: Crackhead Nina)

The catheter/medicine had made me nauseous soI tried to sleep away this feeling. Friday night I unexpectedly threw up my dinner. I had been nauseous but tolerating it until I sat up in my bed and I couldn't hold back :(

Saturday rolled along and I stayed nauseous all day, I mostly slept the day away, my appetite had been dwindling so I hadn't eaten much all day. Once again at night I threw up a little bit. Yesterday morning I weighed 121. I walked 6 laps for exercise.

Today Sunday morning I weigh 119... sorry but its hard to eat most foods :\ I will push myself more. My resting heart rate is around 120 again. No good news to report. Just send me good thoughts and wishes that this misery of mine is short lived. I just want it to pass fast already.

Sunny Day!

We cut up a baby's outfit.

Its only a quarter to two! Can't this day be done already? I've been feeling the very icky effects of chemotherapy for 24hrs now. Trying to nap helps only a bit. My head is actually sick of laying down. Anywho, I forgot to mention that swallowing has been a problem, my esophagus is still cut up from a hard bagel I ate the other day. It doesn't help that my mouth is dry now, so its not healing. I woke up with more pain in my jaw today (probably my wisdom teeth acting up). I can't open my mouth that much, and my gums hurt so brushing my teeth is an obstacle.

I attempted to keep myself busy by cleaning my room and doing some crafts (my doggies new outfit).

Special delivery!

*Wish I could sleep these next few days away...
--------------------------------------------
Minutes after I wrote this I received a delivery! What a way to cheer someone up right? Thank you for the flowers John & Steffanie! You guys absolutely put a smile on my face today when I was feeling down and out! :D

Friday, First Full Day Home

Just a day of relaxing in bed for the most part. The pain from my water retention swelling died down. I am a little more nauseous (just a little) & my appetite has faded away. I'm eating but its not going down as easily as before. Took a few short walks outside just to get some fresh air.

My babes gave me a 1 UP,
"Extra Life"
^_^

* Exercise: I felt a little better at night so I did some bicep curls, military presses, front raises, side lateral raises, and calf raises. I only used 5lb dumb bells so don't worry, I'm not overdoing it with those baby weights ;) I'm keeping it light.

Day 3 of (ICE) Chemo

He later found my stuffed teddy bear on the
bed and started chewing on him LoL.

Yesterday I attended a workshop on frame painting. It was just me and my husband and they gave us the supplies. I will post a video update of yesterdays happenings & you can see our masterpieces in the video.

Today I weighed in at 123lbs which means I have gained 20lbs since my lowest weight in late august of 103lbs. My appetite is still great, no bad side effects from chemo so far. I was told 14 laps in the hallway equals a mile, so I completed that task. Will walk more later :) I also did some arm band exercises. I relaxed in the recreation room for a little while, checked out the cute library they have (there's a lot of books-its nice). I also got a visit from Oliver, a doggy visitor. I hope to see two more doggies later. I forgot to mention that they have me recording how much I pee (for anyone who's been through chemo before). I have to do it so they know my kidneys are functioning well or something like that.

Exercise: I did 2 miles worth of laps (28 laps) and arm exercises with a good deal of resistance (I'm updating now at 3:22am & already feeling sore).