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.

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::

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

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!

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.

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.

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.

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.

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! :)

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.

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).

Day 2 of (ICE) Chemo

I took a shower like this
because I am still
getting infused.

My chemo has nothing to do with ice, it is an abbreviation of the 3 medicines I have to take.

I have been up since they woke me for blood at 7:15am, I proceeded to get some motion going by doing ten laps around the hospital hall. At one point I knocked down a big sign because my IV pump machine has wheels that stick out. That was a little embarrassing but the custodian told me he would fix it -lol! Oops! Breakfast came & I had an really good omelette, saved my oatmeal & bagel for later. I had to take a shower with wires connected to me, but they have this plastic meant to cover your chest if you have a port like me. I will post a picture. Sorry if its too showy, my nurse walked right in afterwards so I didn't have time to take a better shot. I slept with the wires connected to my chest (its really not as horrible as one might think).

I received my first medicine last night, today I am getting a mix of that one & a new one at the moment. They gave me anti-nausea medicine just in case with this 2nd drug. I am trying to eat a lot before the bad side effects kick in. Also I weighed in at 121 today, but that's really just water weight. I've peed over 20x since I've been here, yeah... that part is pretty annoying. Now I remember why my hands got so dried & peeled the first time I went through this 2 years ago (washing my hands all the time). So far my body still feels good!

Exercise: In total today I did 18 laps and light arm exercises.

Kind of Bedridden But I'm Okay

I spent most of the day lying in bed updating this blog. Html can be so tricky and annoying. If you've seen the move 'Something About Mary' I pretty much walk around like the character Tucker (the guy with the crutches), that's what my husband says. I'm very lucky because he has been helping me all day (breakfast in bed, making my tea(s), carrying me through the hallway lol, luv him.) My ankles are getting better, but not soon enough. I have an appointment tomorrow and unfortunately I need to walk a bit to my hospital from the train station. This week I have not been able to exercise as much as I would have wanted because of my stupid ankles. I'm actually disappointed in myself for not trying harder to exercise. I know I have a valid excuse not to train, but I try to push myself probably when I shouldn't because I'm stubborn & I crave to defy the odds against me. On the bright side I received these cute cancer charms in the mail that I ordered awhile back so I played around making earrings and bracelets with them while watching 'The Office' all day.

Preparing

I have Hodgkin's Lymphoma Cancer... again. I am one week away from possibly coming home with pain in my lower back from a bone marrow biopy & being happy that my cancer is gone for the most part. In that scenario I just wait for my stem cell treatment. In a less favorable scenario, my PET scan will show that I still have cancer or my biopsy will show that I have cancer & I will be spending the next three nights in my hospital starting a harsher chemotherapy treatment called ICE. I have undergone easier chemo treatments recently and in the past but I've been told this ICE won't be a piece of cake. I just completed 6 mini chemo sessions & for this reason I still have my hair, & have been able to deliberately gain extra weight. No side effects. I'm a monster. In a good way. Yeah that's me saying I'm strong.

My doctors told me that I should taper back my prednisone (this medicine allows my joints to feel good). Oh yeah I have Rheumatoid Arthritis if you didn't already know that. I started tapering down from 10mgs to7 recently but maybe I rushed it because in the past two days I have been feeling pretty crummy. I'm not gonna taper down anymore, on Friday I explained this to my doctor & she agreed I could keep the prednisone until I undergo chemo. My left ankle is swollen enough that I limp & cannot walk much today. I cannot go to the gym limping which is why I am here laying in bed with my leg elevated.

Its later in the day now & despite my swollen ankle I did a fairly light workout. My ankle felt a little better but I mostly worked on upper body. Push ups, curls, military dumb bell press, side lateral, leg lifts, hip abductions, glute kickbacks, & some wall sits. Ended the night with a high protein meal and lots of water. Its getting late now so I am going to work on my exercise plan for the WWBD project.

The Start of It All

Whooptie doo. I started feeling a bit sick/feverish on the evening of June 26 (my husbands birthday). The sickness went away soon after. I had noticed excessive sweating in my sleep a few times around then but thought nothing of it. At one point I did remember back about how I sweated in sleep so much during my first bout of cancer. I guess there was a night that I sweated a lil more than I had been, plus when your sick I feel you smell differently, you smell "sick". At least thats what I think, and I would notice my scent had changed. It wasn't normal sweat, it smelled different, worse. A few weeks later I started getting headaches, they were not normal headaches I knew right away. 

I admitted myself to my hospital ER and all tests seemed fine. CT, EKG, blood work, etc... The doctor there told me I may have a viral infection and to rule out Meningitis thru a lumbar puncture (spinal tap). I opted out.  I emailed my doctors (Rheumatologist & Oncologist) about my recent symptoms, saw them both and the only thing that seemed off in my blood work was something called "bands", which my Rheumatologist was quick to point out was not in her field, but rather something the oncologist would better understand. My oncologist scheduled a routine PET scan and not soon after (about 3 days later) I found out through a rough call from ANOTHER hospital (more specifically a CANCER) hospital, that something was wrong. I knew from the moment they told me the call was from Memorial Sloan Kettering that I must have cancer again :( My oncologist did not want me to find out that way, but they had called me at work soon after he had spoken to them about my case. They definitely get on top of things and so far I have enjoyed my experience with this new and BETTER hospital.

On my first consultation meeting my new doctor I got 2 bone marrow biopsies right there in the doctors office. Unexpected. We got that out of the way, the faster we moved, the sooner things got done. A week later I was scheduled for a CT scan, pulmonary function test, EKG, more blood work, and I think an echocardiogram. All the while I had fevers that were getting worse, an appetite that was barely there, and headaches that put my mood into misery all day long. I was tired, I was weak, I was scared. To make matters worse I dealt with my stupid health insurance making getting tests done at times difficult. I recieved Neupogen shots to the back of my arm to boost up my white blood cells? At one point my fever went to 104 and I admitted myself to the hospital for overnight stay. It was a good move in that they boosted me up with liquids and medicines that made me feel a bit better after that. I also recieved a transfusion of platelets and these things in the end gave me enough strength to finally get my first dose of mini-chemo a week later. I was disappointed it wasn't sooner (the waiting game was killing me) but my insurance hadn't given authorization yet -_-.After I finally got my first dose I felt immediately better the next day and have been getting better since! ^_^ 

I am currently trying to gain back the weight I lost, I lost almost 10lbs. I am almost back to my normal weight and I plan to gain another ten. My appetite has returned with a fire, I eat too much now.As much as I have been through dealing with RA, Lupus, & HL over the course of the past 8 years I still feel I am highly blessed and would go through it all over again ten fold so long as the people I love didn't have to. To know that my loved ones are healthy and safe, and only I am "suffering" keeps me stronger. I know I'm strong. I know I'm always capable. I am a blind fighter, I tug, pull, push, hit, lose my breath even when I'm down but keep going. Sure I complain and feel pain when things happen, but I cry for the moment, and I cry for the hearts of the pple that love me seeing me sick. I don't want to cry for their pain and suffering, it would hurt me more that I can't control it. I control me, and I know me, I know I'm special (see my blind confidence), I call it stubborn, I always go against the odds. Jeannina just equals = unconventional/weird/odd & as rare as the Albino Axelotl lol (go look it up - I swear that's me) and YES I AM. I may hide behind a fascade of a plain and simple common girl, but I AM NOT. Need proof? Watch me triumph AGAIN. So just know... I got this...