Showing posts with label Memorial Sloan Kettering. Show all posts
Showing posts with label Memorial Sloan Kettering. Show all posts

Friday, April 19, 2013

Well I Made it To Wrestlemania

Before my chemo began my husband and I had contemplated if I'd be able to go. Recovery time from a SCT is like 3-6months depending on the person. I think that I recovered rather quickly. By 3 months everything looked perfect as it should be according to my scans a few weeks ago. Although my blood work over the past few months slowly progressed, I had been feeling better since right after my last post in February. I didn't feel I needed to post many updates considering I FELT pretty much back to normal. My doctor eventually gave me the okay for Wrestlemania & so last we had a great time. I'm so happy I didn't miss out!

I'm back to the gym since 3 weeks ago, although I haven't been too consistent >_< I do go every week though at least 1-2x. Its been COLD in NYC so I avoid my 1mile walk to the gym on those days. I know its not an excuse. On the bright side though, I have been walking A LOT. I go out almost every day to run little errands for myself/husband/friend/family you name it. I avoid public transportation to the best of my ability. Just last week I walked for HOURS on a very busy errand day and completed the most miles I've ever walked at one time. It was just shy of 9miles I believe.

My mission now is to build this body back up in strength and aesthetically. I'm not as strong & toned as I used to be. I demand bigger muscles & more endurance hehe.

I may not update for awhile & thats good because that means I'm better!
I want to leave saying thanx for all the support guys! It carried me through a rough time in my life & I really appreciated the love.

Wednesday, February 20, 2013

My February Update

I would say that I felt almost back to normal about a week or two after my last post. Right now I feel great, been feeling this way for sometime now. I practically feel 100% except when I move around too much and realize my endurance isn't what it used to be. I've been building it back slowly with walking and other light exercises here and there. I went through an emotional 2 week rollercoaster having been upset due to some family related issues I was having. I also think I was abnormally emotional, it reminded me of how I get sometimes being a woman and all. My doctor even asked me yesterday if I was experiencing any symptoms and she said sometimes the symptoms occur even if you haven't gotten your period. So I'm not crazy! Anyways I'm fine now but I did tell her I had been having a strange light-headed, almost dizzy, can't concentrate, almost headachy, dehydrated feeling in my brain. I told her I assumed it was dehydration, but its been ongoing for days and I guess I'm still not drinking enough. I might not be getting enough sleep either, but who knows!
Enough hair to hold a clip!

My blood counts went up a tad since 3 weeks ago. Everything is looking good so far but I'm still not in the perfect clear just yet. I believe I get a scan on my next one month visit >_< Also I've been taking this yellow paint like medicine called Atovaquone, its an antibiotic I have to take for 6 months to prevent a certain kind of pneumonia. Aside from the occasional boredom I am doing fairly well and am so happy to feel like the rest of the population. OH and my hair has grown back! Its still in the early fuzz stages, but its definitely there.

Monday, January 7, 2013

Its Like I'm Still In The Hospital

Just have to remind myself :/
Its day 20 after my Stem Cell Transplant. I still feel like blah. Now I understand what they meant when they told me I wouldn't feel like myself for a few months. I hope this feeling is short lived. I can't do anything. Bending down or turning around nauseates me more or gets me dizzy. I'm almost always nauseated to some extent, just more or less at times. I am weak always, tired usually. I feel like a quarter of myself. It sucks. Its very manageable, but waking up everyday like this is just crushing. It starts to get to you. I almost wanted to whine and cry to myself a moment ago. I'm alone at the moment, my husband went to run some errands. I don't want to cry to him or anyone, I just thought crying would feel better than this, it would be a change at least. I'm just so sick of feeling this way and I've only been out of the hospital a week. Being left to my own mind is the worst thing for me, I notice I "seem" to feel better when I have company because talking distracts me. Watching tv/movies (especially happy/uplifting ones) does the same thing.

On a positive note I have to remember: I don't have to worry about my catheter on my chest when I sleep (they took it out), I don't have to cover it b4 I shower every time, no more sticky paper ripping my skin, I'm not throwing up, having fevers, or worst of all chills. No crazy headaches either. I'm back to my own bed, shower, & warm room. Oh yeah and no horrible throat/chest pain and dry mouth/thick spit problems. When my throat/chest was dry and probably full of holes that might have been the worst thing. I had to resort to drinking for nutrition and even that didn't feel very good going down. I had to take oxycodone to stop the pain, it felt like my ensures would not go down, like they would stay in my esophagus and put pressure in my chest. I couldn't sleep unless I took pain a med and ativan. I still take ativan now when the nausea gets real bad. I hear that people in my same situation often have it worse, they are still throwing up now and they have to get even stronger painkillers for the throat pain.
I have a tough exterior.
I'm not always okay...
I am just venting today, not feeling well still. Oh yeah and I guess I gotta remember NO MORE BEEPING or ghost bed. Glad I don't have to hear my machine beep (that was SO effing annoying) and I hated my hospital bed because it moved. It was like an air mattress in which certain parts would inflate at random times to keep your blood flowing/body moving if ur an old lady. All in all I couldn't have asked for a better hospital experience, but who wants to be in a hospital!? Glad I'm home, just... gaaaahdammit can this weakness end already!? ::sigh::

Friday, January 4, 2013

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.

Wednesday, December 26, 2012

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.




Monday, December 24, 2012

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.

Saturday, December 15, 2012

Guests Make Me Happy!

Completion of 3 miles!

My hubby's silly mask
Today I had a really great day, I woke up feeling more nauseous than the day before but I took a medicine that helped me pass the day. My husband walked with me for my daily laps, we did 2. He also drew a motivational reminder sign for my wall that says "Its NOT forever"... because thats how it will feel when I am at my worst. I had many guests today, my aunt & uncle came by with 2 other guests. Later my friend Kunga surprised me with her presence and hung out with me. My mom came late to sleep over. I walked my 3rd mile with her. I can feel myself getting weaker each day, but I'm pushing forward... doing what I can while I still can.

Friday, December 14, 2012

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

Thursday, December 13, 2012

Day 2, -4 in SCT Terms

Working with my gloves
and mask.
My little sister originally
bombarded it with decorations,
it was driving me nuts so I had
to take it apart.

Today I felt a bit of the fatigue that comes with chemo, it came and went throughout the day. For some reason walking the halls kept my energy up, surprising right? I know sometimes when your tired its good to exercise to feel energized, you wouldn't think so. Not so sure how that goes with my chemo situation, but so far its working. I kept myself busy setting up my dusty little old Christmas tree (I had to wipe it clean first) and then put up other decorations around the room.

They grew back considerably fast!
I noticed also that my eyebrows were finally noticeably growing back, but they will be bye bye again soon. At least I don't have to draw them in for a little while. Considering that I had some fatigue and nausea from time to time I had a really good workout day:
I walked 3 miles in the hallway, I did 50 squats, 200 crunches, 60 wall pushups and 20 lunges for each leg. That's what Batman would do. No excuses! Oh and my admission weight was 118, my appetite has been a little off. I EAT, but my stomach to brain connection is not normal. So I don't get hungry, I just eat when I know its time to eat. Not enjoying my food as much lately, its not bad, its just not DELICIOUS like normal. Its been like that for a few weeks now. Hopefully it doesn't get too bad, I need to keep the weight on!

Wednesday, December 12, 2012

The BIG Chemo Admission for SCT Day -5

Ice Skating!
Its 12-12-12! I did not realize this would be my admission date until someone told me yesterday. I hear its a lucky date :D Yesterday I had a check-up explaining my upcoming chemo/transplant. It was an early appointment so I was able to stay in the city and walk to Bryant Park to go ICE SKATING with my husband! We had a lot of fun, and didn't fall. I almost did, but I DIDN'T! On the way there we passed by Rockefeller Center.

Rockefeller Christmas Tree
Today I was admitted around noon and settled into my room. I didn't sleep too well last night so I was very tired all day. I don't feel nervous but maybe I am subconsciously anxious. I organized the room a little and found the energy to do some exercise. The best part of the night was when I tested and used my rooms computer webcam. I spoke to a distant cousin who I hadn't chatted with, let alone SEEN in a long while and we must have talked for almost 3 hours. Day one, success.

Exercise: 200 crunches, 1 mile walk in the hallway, 50 squats, & some resistance band exercises for the upper body.

Monday, December 3, 2012

Stem Cell Collection Attempt #2

Yesterday I was a human pin cushion. In addition to my 2 daily Neupogen shots to the back of my arm I had to receive a new Lupron shot to the side of my butt cheek and a Mozabil shot to the arm to boost stem cell production in my bone marrow.

I had mild nausea from the Mozabil and had a hard time sleeping because I kept waking up. I felt restless all night. Luckily this morning when I came in to collect my stem cells they placed me on a bed this time instead of a couch! WIN. Unfortunately during the 3 hour process I only slept one hour because I was still restless playing on my tablet. It was an unusually warm day so my husband and I went out to eat a sandwich for lunch and relaxed in a nearby park before my next appointment. Around 1:30 I went in for an EKG and PFT (Pulmonary Function Test) where I met the best technician I've thus far worked with. He was really laid back and relaxed unlike others I've had. I hope I have him next time too. I also met a sweet & kind 86 year old woman who sat next to me in the waiting area to share her cancer story and spread her blessings. I'm not gonna lie, her words touched me so much she made me tear up.

I later went in to wait for another Mozabil shot for tomorrows stem cell collection. As we were waiting a nurse called me to let me know the good news. Today I collected over FIVE MILLION stem cells! I don't have to come back tomorrow because they have all the cells they need. I also didn't have to take the Mozabil shot or anymore neupagen shots! ^_^ The nurse told me... I will very likely be admitted for the STC next week... oh boy...

*I started a simple squat plan that I will continue throughout the holidays.

Friday, November 30, 2012

Doctors Appointment

My husband got me an
early birthday gift.
A juicer!!!
Today I had routine blood work done and met up with my new Stem Cell Team. I am now under the care of a different doctor and nurse. I met my new doctor months ago and I really like him because he has a super positive bubbly personality. I love bubbly people. We discussed the upcoming weeks plan of action. I start my second attempt of collecting stem cells on Monday. They each told me to have a long hard talk with my bone marrow this weekend hehe. In order to ensure results they are having me come in on Sunday to receive a shot that will boost my chances of producing stem cells. They told me I would also be receiving a Lupron shot different from my usual monthly injection. It will be a higher dose 3 month slow release kind that may give me more heat flashes.

Wednesday, November 21, 2012

Savoring My Break

On Monday I had a follow up appointment with my doctor. I received the great news that my PET scan from last week was completely clear! ^_^ My doctor told me that I wouldn't be seeing her until after my stem cell transplant. I am now in the hands of the SCT team. They called me the following day to update me on the next plan of action. Starting next Wednesday I will start taking neupogen shots in the arm again to see if my bone marrow will produce stem cells this time. Its been a very peaceful and restful week for me. Its been great aside from a tiny bothersome headache. My mom visited Monday night and we watched... "The Dark Knight Rises" of course! She had never seen it and loved it. Since then I have been on a Tom Hardy/Christian Bale fix having watched "The Fighter" & "Warrior". Notice the trend in my movies? ;)

Sunday, November 18, 2012

Recharging

The 1st "beautiful" fail
behind my arm after a
Neupogen shot.
Well it turns out the "beautiful" fail my husband left me the other day wasn't his fault. The next morning I received another bruise. I suspected it was due to low blood platelet counts, not to mention my gums had been bleeding more than usual the past few days when I would brush my teeth. On Thursday I went in to collect more stem cells, and got a CT/PET scan. The nurses also had me get a platelet transfusion because my numbers were too low. Later in the day we found out that I still hadn't produced any stem cells. I was told not to come back on Friday. Though disappointing, I was much more relieved for it to be over. Its been a hard week on my body, so I needed this break to mentally and physically recharge. On Monday I will find out what is the next plan of action.
This was the 2nd one. Its
easy to bruise with low
platelet counts.

I haven't been updating the past few days because I needed to just rest. Friday & Saturday I was also distracted with visiting guests. My plan today you ask? To vegetate watching Batman Begins, The Dark Knight, & The Dark Knight Rises all over again ;) I will also try to do some heavier workouts today since I'm feeling like my old self again.

Monday, November 12, 2012

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! ^_^

Thursday, November 1, 2012

Day 1 Second Cycle of ICE

What a week! My appointment should have been on Monday but in the advent of 'Hurricane Sandy' aka 'Frankenstorm', it was pushed to today -Thursday. My appointment was for 4pm but my doctor specially requested that I come in to see her first around 1:30. I did not arrive to see her until about 2:30. There was surprisingly NO traffic coming into the city. I unexpectedly had to get a bone marrow biopsy done today, THANKFULLY my doctor is good at what she does & she made it hurt the least possible. It was probably the least painful bone marrow biopsy I've gotten done. As soon as it was done a woman from the Stem Cell team came & spoke to me about the coming procedures I'll have to undergo before I start my transplant.

I finally arrived at my main hospital around 5pm (an hour late) & they took me to my room quite quickly. Here I am sitting quite bored because I keep being asked a million repeat questions about recent symptoms, how I feel, my medical history, etc. It really gets annoying after awhile. My nurse right now is pretty dull, but her shift ends soon & I'm hoping the one I have overnight has some personality. My vitals are good, weight remains the same.

Exercise Update: I'm disappointed in myself for being lazy during 'Sandy', I did a tiny bit of exercise but nothing to be proud of. Today I made sure to lift some weights though: db bicep curls, db military press, situps, lunges, squats for the most part.

Also, since Halloween didn't really get to happen this year I decided to wear my Batman outfit today. I swear I don't look crazy! :)

Wednesday, October 24, 2012

Back to Exercising

My aunts came in from Puerto Rico yesterday for a short visit. We went out to eat and do a bit of window shopping. I feel good. As we were shopping I saw a box set of weights for a decent price and came home with it. Last night I did some challenging upper body exercises w/ my new weights & since they are big plates they make me look very strong ;) I love it! Its all illusion though, they aren't as heavy as they look. I'm so happy I made the purchase because I miss having muscular arms. I cancelled my gym membership a month ago because I figured I wouldn't be able to workout much or be in a public environment now that my immune system is down.

Today I had to run an important errand so I woke up early and walked over 2 1/2 miles, pretty much 3 if you count the extra walking I did after I got to my destination. Oh! And can you believe it? Some guy actually hit on me today on my walk (remember I'm bald). I was wearing a cap but you can tell I have no hair, so that was a little surprising. Tonight I was invited to try a free Zumba class. Lets see how my body holds up. I feel like my normal self. I feel great. Can't complain. The next few days should be uneventful in relation to my treatment. I return for my next 3 day ICE chemotherapy on Monday.

Thursday, October 11, 2012

Water Retention

Sunrise this morning.
I feel like crud. I think the fatigue is starting to sneak its way in & that doesn't help me this morning. My body feels sore and swollen all over. I know its because of all the saline/liquids they've been putting in me. I weighed in at 126lbs this morning, like I said its mostly water. I'll be down to 120 maybe on Monday. I'm sluggish, my head doesn't feel like its all here today. I really just want to sleep the day away. So I guess it begins... I will try to do some walking, but I am definitely staying away from resistance exercises today. My skin is too tender to the touch because of all the water in my body. I'm being discharged in a few minutes. I can't wait to lay in my familiar bed and REALLY relax.

Update: So when I got home I took a few naps with my dog Korra. She was a good dog today, giving me love and licking me a bit too much lol. Right now I am helping my husband put away the laundry & I managed to walk... about a mile. Maybe it was a little less,  but I think I deserve a cheat day :P

Wednesday, October 10, 2012

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).

Monday, October 8, 2012

Checking In To The Kettering Hotel

My impression of my dog  Korra
if she found out she had to
stay in the hospital. 
A disappointing morning but my doctor wanted a "perfect" scan, so I was prepared for this. Its still a let down though. I weighed in JUST under 120lbs today, which is great news seeing as how this new chemo called ICE will likely induce nausea and vomitting (lets hope not). I'm not one who throws up easily, so I'm going to make sure my food stays down even when the going gets tough hehe.

I will be here for two nights and likely be able to leave Wednesday ::crossing fingers:: I must say its kinda weird to check-in for a room at a hospital feeling completely fine. I've never done that before. Each time I've stayed in a hospital it was because I was sick. Picture me, just sitting on my hospital bed right now just chillin. Thats what I'm doing, just here sitting, not even hooked up to anything yet.

***Update: They finally gave me my first infusion of this ICE chemo and it is 10:30pm. I checked in at 2pm, thats crazy! Also I managed to get a tiny workout in: 20 Squats, 30 leg circles each leg, 40 alternating lunges, 20+ wall pushups, 2min 15sec wall sit, and 20 alternating standing glute kickbacks. I might have done a few other short exercises but I can't remember exactly.