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::

Home & Expectations

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

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

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

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

Fevers & Chills

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

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

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

Was Too Sick To Post This Past Week

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

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

I love my aunts <3

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

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!

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...