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.

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.

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.

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.

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? ;)

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.

When It Rains, It Pours

When I was still hopeful in the day.

The past few days have been disappointing in that I had to travel over an hour to my hospital to get my blood test, be told my white blood cell count was still too low, & then be forced to head back home. Well today took the cake. I was finally ready to get my stem cells collected. First of all I didn't sleep enough last night, and I arrived to my appointment late due to one of the worst cases of train traffic I've experienced. The nurses didnt seem to mind & got me connected to the machine. My fingers and face got tingly at one point, it didn't feel too nice. They gave me tums to help the side effect and they later injected Heparin into my lines too. It took about 4 boring hours. The nurses told me initially that my blood work didn't seem very promising of stem cells so I may have to take a new injection that had to be administered in the hospital at 5pm later in the day if the amount of stem cells they collected was very low which they already anticipated. This new plan was not on my agenda, so unfortunately my husband & I were forced to stay by the hospital after my stem cell collection ended around 1:30pm. As is routine, the nurses told me they would call me later and let me know how many stem cells were able to be collected today. I need to collect 5 million.

My husband and I went for lunch & walked around the city bored for a long while. We thought coming back to the hospital early to get my injection would help us get things done faster but we were told it had to be given at earliest 4:30pm. On top of that I was told my insurance was bringing difficulties since it is an expensive drug so my main nurse was trying to get the ok from higher ups while we waited. As we waited I was dealing with another personal issue that I had going on today regarding paperwork with my father that I found out didn't happen as I had planned. I was losing patience, I was upset, and then the call came about the stem cells. "ZERO" Yup Z-E-R-O. I broke down and started crying right there. I was hysterical. I didn't even think collecting ZERO stem cells after four hours was possible. I thought something was wrong with me. I expected my stem cell count to be low but geeze, not zero. My husband quickly calmed me down and helped me understand things better. He reminded me that the nurses did explain I may have to keep returning for days until I was "stem cell" ready. I guess I just forgot & was confused about what they meant. I was mentally exhausted, spent, & over stressed today. Thankfully, shortly after they gave me my shot and I went home, but it was a LONG ASS day.

On the bright side: I wasn't very nauseous today. I'm feeling better but my new pain is all over body tenderness to the touch due to my daily neupogen shots. Oh and you won't believe what a "beautiful" FAIL my husband did on me today. I will post the "beauty" tomorrow. I need to sleep.

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! ^_^

A 'BEST NEWS EVER' Kind of Day

I noticed I woke up upbeat. I was humming, singing, being silly. It seems when I can do that -things are looking up. I'm not going to lie. I cried a lot this week. I'm very impatient lately. My other chemos did not leave as long of a discomfort as this last one has. Everyday I woke up hoping to feel better & although I did a little each day, it wasn't sufficient enough for me. I'm still not feeling better, but for the moment I can be appreciative its not worse.

The things that annoyed my life this week:
This catheter on/in my chest (uncomfortable to lay), its more nauseating than anything, the dry mouth/throat/gums (having to eat soft things), constipation, my stomach not being 100%, my husband giving me a shot to the back of my arms everyday, & having this headache-y feeling.
-----------------------------------------------
NOW to the GREAT NEWS: While out and about this morning I received a call from my doctors office & they told me that the Bone Marrow biopsy from last week was CLEAR! No cancer! WOOOOOOOOOOOOOOOOOOOOOOOOOOOOOOOOOOOO!

I JUST WANT TO SING & DANCE, I FEEL SO GOOD! SO HAPPY! SO HOPEFUL! If this weeks chemo beat my ass down, well this news just boosted me back up ten fold! Its a GREAT day! ^_^

Wednesday

OMG how could you NOT love
the little ball of FuFu!

I've had a lot of guests visit me the past few days. Its been a nice distraction. Yesterday my brother came by, then a friend (thx for the treats again!), and later my brothers girlfriend. I am starting to feel a tad bit better. I guess what I mean is that my head isn't hurting AS much, as before but it still doesn't feel right. Its a slow progress. Today I had to get blood work done so I went out for a little bit this morning. When we came back home I planned to just lay in bed all day and rest. Thats exactly what I did. I don't like to lie in bed for hours but there's not much else I can do to feel better. Tiny exertion, tires me out. My handy dandy dog slept by my side for most of my nap, and I felt somewhat better later on. I'm still not used to this damn catheter on my chest/neck >:(, its physically not bothersome, but I think it adds to my nausea when I lay/sit in different positions.

Anyway I hear its snowing out, so its not like I'm missing out much... 

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.

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.

And Now I'm Bald

Bad hair day Korra.

I have been feeling back to my normal self since Friday morning so I didn't think I needed to update too much this weekend.

I noticed my hairs starting to fall off on Friday, by Saturday morning I was realizing I was excessively shedding. All of Saturday my hair fell off everywhere & was becoming bothersome/itchy/messy. I tied it up for bed to awake on Sunday morning with a head full of knots. It wasn't normal knotting, it was the hairs falling off getting caught in the hair that was not. I tried, my husband tried, & later even my mother tried to untangle the mess but it was almost impossible to maintain because it continued to knot. I decided, it was time. My hair would have fallen off completely by the end of this week if I let it, but I saved my bed sheets & floor the hassle of it sticking everywhere.

Last night my brother buzzed it all off so I'm BALD. We had fun cutting up funny hair styles before it was all shaved off. My dad took pics but I forgot to get them. I have to admit, I'm a little disappointed that we had to shave it all off this time. We tried to get a short "GI Jane" look going but my hair was patchy this time. It took a moment for me to get used to being bald but I don't look too bad I think. From the front its not terrible, but from the back its still kind of patchy since I still have tiny little spikes of hair. Honestly I'm only upset about the fact that now I really look like a sick person. And that bothers me because I'm not really unhealthy or that sick. I feel strong, & I don't like that people will look at me & assume I'm weak. I will wear a wig or head tie until all the stubble falls off but I don't mind walking around bald.

Every morning my dog comes to sleep in the bed with me. This morning when my husband let her into the room she jumped up on the bed & I sat up to greet her (also try to startle her) but she just gave me a funny look. Instead of being scared thinking I was a stranger she recognized me but with hesitation because she approached me & re-sniffed me all around. It was like she had to sniff me up & down to make sure I was who she thought I was. It was cute and then she caught me off guard & started licking my head so I had to pull her off me haha! Also I got weighed today: 120lbs (keeping steady) Heart rate 87bpm & blood pressure good, no fever :)

Nauseous Night

It was a pretty rough night. I went out to dinner last night (not very smart of me I know), had a great time considering my insides felt horrible. I couldn't fully enjoy my dinner, I don't think I ate enough, the food did not want to go down. I can't explain why, but by the time I got back home I was feeling the worst of it. Possibly too much exertion walking & maintaining my body temperature (it was COLD out). When I got into bed around 10pm I felt this extreme exhaustion, my head hurt, my heart rate was high, and I didn't feel like I was breathing well. I woke up around 2am nauseous, the most I've felt yet. I thought I might throw up, so I got up & did some breathing exercises, trying to contain myself. I sat down in the kitchen, made myself 2 cups of ginger & honey tea, all the while trying to relax my breathing & heart rate. My resting heart rate was 120, so that was a concern. I went back to bed & continued to wake up almost every hour. Thankfully my heart rate has somewhat normalized, if you can call 104bpm "normal", but my heart tends to beat faster than most people anyway. The nausea subsided & best of all my breathing is better. It was a scary night waking up with a trio of problems multiple times & wondering 'when the hell is this weird feeling going to go away?' or 'will it?'

I'm afraid to walk very far now. Geeze. I guess I'm learning that this new chemo has a very delayed effect on my body & just when you think your getting better -your not. So I'm just going to keep on that nap schedule. As boring as it is, napping seems to be better for my body than walking lately.

I Exercised

My awesome husband
made these for us <3

I feel better today, not a lot better, but in comparison to the last 2 days I can manage to do things instead of lay in bed all day. I took full advantage & exercised: 3 sets of body weight squats, 200 situps (variations), dumbbell curl, overhead, side lateral/front raise & triceps. Whenever I felt winded I took it slow. That's all I'll do today, fatigue is sneaky these days.

Hey if you want a mental image, picture my little dog on my stomach as I did sit ups. She is so needy! Can't let me exercise, has to sit on top of me! I don't mind lately as I've been pretty needy too. I told Rick when people get sick for now on we will buy them a dog. Having a sweet dog cuddle next to you when you feel bad has really helped my spirits. (I'm officially a dog person :-o )

*SERIOUSLY my husband is AMAZING, he GETS me. HE KNOWS ME. I dreamed about him my whole life & he is real!

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

Neutropenic

Today was a crappy day. I had a checkup in the morning. I thought I felt fine today until this uneasiness settled through my body as I rushed to get to my appointment. This uneasiness I speak of is this overwhelming tiredness that pours through my veins and gives me an almost light headed feeling. We were walking too fast and I could feel my heart jumping out of my chest, my lungs losing a bit more air than I'm used to. When they recorded my heart rate it was about 110bpm, so not too great. My bloodwork also showed that I was becoming neutropenic (I had low WBC count- meaning I can't fight off infections well). My doctor told me I would probably start feeling more tired and I had already begun noticing this morning.

I went out with a friend for lunch and was feeling worse by the hour. When I finally came back home I immediately prepared myself for bed, mind you it was only 3:30 in the afternoon. I napped on and off. The naps didn't help much the first few hours but its 9pm and I'm a little better  now. Today I noticed the less I move, the less crappy I felt. Assuming this is the trend I expect I'll be in bed a lot the next few days. I REALLY don't want to move -_-. My doctor told me I could get fevers again, so I'll be on the lookout for that. Oh joy!

Weekend Update

These are all the medicines they sent
home with me from the hospital.
Two are anti-nausea meds, but
luckily I haven't had a
need for them yet :)

On Saturday: Friends visited as I relaxed in bed feeling a tad bit nauseous & tired. I went to church & ran some errands with the family. My mother visited in the evening, and as soon as she left I hit the bed like a bag of bricks. I did very light arm exercises, but I'll admit it wasn't much of a challenge.

On Sunday: The weather was a bit warmer so I decided to enjoy the fresh air. I double checked my heart rate before embarking on my journey to my parents house. I made sure to take an easy pace and keep hydrated with a bottle of Gatorade. I honestly admit I had second thoughts about doing the walk, but I was comfortable knowing my heart rate was not excessively high. I wouldn't have walked 3 miles otherwise. In the end I was proud I made it. I don't know where my energy comes from.

I must say, it must seem like I am taking to this ICE chemotherapy well, but after a long day I am ready to pass out. I know my body very well, and what it is capable of. I know I seem strong, & sometimes I give that vibe off too easily. I would never advise anyone in a similar situation to follow in my steps. Everyone's gotta do what "THEY THEMSELVES" can do. I tend to push myself, and I admit I over exert myself at times. Today I pushed myself just a bit more than probably advisable. I'm okay though, but BOY am I tired. I can't wait to finish writing this blog just so I can go to sleep! But my point is, as strong/capable/independent as I seem, sometimes I really just want a warm hug with someone telling me everything is going to be alright. I'm vulnerable. I'm strong, but I'm still vulnerable. I know I say "I got this", but sometimes I'm not so sure. Can you make me feel safe? Can you convince me? In the end the unknown still scares me.

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.

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

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.

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.

I'm a Happy Girl

I was alone this morning eating breakfast & I could tell it was a beautiful morning. The sun seemed to shine bright through the kitchen window & I could feel a refreshing breeze. I just sat there & thought to myself that the only thing missing for a perfect moment would be the smell of green, some grass, plants, some kind of nature. Not too much nature around me. As I sat there the thought came to my mind again: I love my life. I love life. And I've only meant it more each passing year as I mature & go through things that sometimes suck but often times make my life better. I'm a big believer in ones ability to guide themselves into the best possible path they see fit. Example: I have cancer. I'm not depressed. I'm happy, I'm really happy. I don't like cancer, but I'm not miserable because of it. I'm better than that.

*Update: Yesterday I had to do a CT scan with my PET scan. I wasn't aware of that. I had to drink like 2 & a half cups of that yucky fake orange-rasberry soda/juice for an hour. I fell asleep during the 25 minute scan. Also I weighed in at 118. I will post pictures later.

PET Scan

I'm about to eat a big breakfast right now because it will be my only meal until after 5pm probably. I cannot eat 6 hours prior to my scan today so I will load up on some filling proteins & carbs like toast with eggs, plus some bad food too like Nutella maybe ;) I can't exercise either, you can't exercise 24hrs prior.
This scan is very expensive, my insurance hates to grant me permissions for it. My doctors have to usually request with a special note. Its awesome though, the images that it produces with x-ray, infrared lighting, and all that mumbo-jumbo. I have to get this radio active injection a half hour before I get scanned. I think of spider man every time I hear radio active and like to think that on PET scan days like this I'm extra cool because I'm radio active haha.

Wish me luck, & keep me in your thoughts today because Monday will be results day. Time is ticking!...>_<

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.

Light the Night

So its Wednesday and we walked the Light the Night for the Lymphoma & Leukemia Society that my husbands best friend organized. I had a great time, everyone held lit up balloons & some people even released their golden "In Memory" balloons into the sky, it looked so pretty, magical even. It was beautiful. I honestly had an amazing time, it was a night to remember & meant a lot to me now going through this ordeal. I want to say that today was 'overall' great, it just got crummy at night.

Earlier in the day, I ran my usual errands with my husband & he drove me to the gym because I have been having an issue with my ankles (due to the tapering down of my medicine). Usually I walk to the gym, but I didn't want to risk my ankles any further in preparation for the festivities at night. I had a great workout, my ankle even felt better. I then walked home & my ankle was okay. We went to Light the Night & the ankle did not bother me much until later in the night when it was close to going home. By the time I arrived home I was limping pretty bad but could walk, only slowly. I relaxed in bed, both legs elevated (because my right leg had started to feel bad too). As I prepared to go to bed I decided to go to the bathroom before bed because I knew it would be hard to walk in the middle of the night. OH my Lordy! My ankles were terrible, much worse than I thought, I could not even stand on them. I tried for a few minutes to get the right footing but it hurt so much. I had to get help from my husband who literally lifted me to the toilet & as he did I started to cry because it scared me to think that this could be my future.

I never want to get to that point. I loathe R.A., what it does to my body AND mind. The word inFLAMED best describes the horrible swelling that ruins my joints. Ugh how I hate it. That bathroom experience was one of the worst I've ever had. My ankles have only ever been that bad maybe 3-4x in my past. I guess tonight was one of those unfortunate nights My plans to go to the museum with my aunt & uncle tomorrow are not going to happen. No gym either. At least I can re-watch episodes of The Office all day. Watching super hero movies & comedies tends to cheer me up in moments like these.

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...