Forgot to post this

Im honestly so sick of being sick. I am missing so many opportunities because I'm ill. I want to be as normal as possible, but nothing seems to be going right. My best friend offered me my dream; to go to Paris, England and Italy with her in one big trip this summer. I couldn't go because I can't get travel insurance, because no one will cover me, as I am "high risk". I planned this big sleepover that I was really excited for because I haven't had a sleepover in over a year now.  I may not be able to do that now because I have shingles for the THIRD time, and I might be admitted for that tomorrow. So not only will I have that admission, but I am also supposed to be in hospital all week next week for some intense chemo. Also I have to start on this new weird drug that goes into my lungs and I have to be in a "clean room" and all sorts of weird stuff, because my current drug is suppressing my immune system. And that's just the beginning. If I got into the basic stuff that I'm missing I could go on for hours(school, going swimming, sports, walking, skipping, sunshine, camping, anything involving independence etc.). It's just negative after negative. I feel kinda dumb for complaining about stuff i've had to deal with since day 1, but I guess when I couldn't move from the bed/couch because I was so sick, I didn't really care about the opportunities that I was missing because I didn't feel like doing them.  But now that I'm slowly starting to feel better, I want to do more. And knowing that I can't because of this stupid disease, is really starting to bug me, to say the least. It's starting to really weigh me down, and I'm definitely not feeling very positive lately. I'm sorry I haven't been blogging lately, I guess for a while I sort of lost interest. Ill try to make the next blog a little more happy, but I think it's good to vent out the negatives here and there as well.

Whats up

Its been a pretty stressful little while for me lately.  I finished my five day stint, and I did indeed lose all of my hair once again.  This means that it is highly likely, that until September, my hair will continue to fall out every time I get that treatment.  This has been really hard for me to go through, because it's not like I'm just losing my hair once.  It grows back a little bit and I get excited, and then it falls out all over again. Right now I'm on an evil med, called dexomethozone and it really messes with my head.  I find it very difficult to think clearly, and I have very intense mood swings, so I am not very happy at the moment.  I know things will get better, I just wish they would pick up the pace a little bit.

hair progress

My hair has started to grow again. I actually almost have a full inch of hair right now! I am very excited. My doctor said that since I just got a lot of treatment in the five days, there is about a 50/50 chance that my hair will stay this time.  If it is going to fall out, it will fall out in a week or two.  I'm scared because I don't want to get all worked up that my hair is growing, because I know there is a good chance that I will just lose it again.  But it is just so exciting to feel hair on my head again!  I can use shampoo, and tug on my hair a bit, and I have nice eyelashes and almost full eyebrows.  How could I not get excited about having all that?  I'm so worried that it will fall out, it is heart wrenching.  I have to hope for the best and expect the worst I guess, here's hoping!

1 year!!

On March 27th 2014, it was my one year mark, since I started treatment.  I wanted to write a special blog on that day, but unfortunately I was in hospital for a 5 day stint(5 days of chemo) and the meds that I was on during that time really messed up my head.  I couldn't think straight enough to decide what exactly I wanted to write on here.  However I did make a facebook post, so you can look at that if you want. 
This past year I have been really self conscious of losing my hair, and the other many ways my appearance has changed since I started with all of this.  It's really hard being a bald and poofy 16 year old girl.  On that day, I gathered up all of my courage and for the first time, I posted a picture of exactly what I look like.  I think I have finally come to terms with the fact that I look different, because I am struggling.  I don't think there is anything to be ashamed of, and I don't think anybody should be ashamed of exactly who they are.  I plan on starting to post more pictures of my progress, on here and on facebook.  When I have hair and look "normal" again, I want to have pictures and memories of how I look now. 

I'm on the go!

So I finally got my counts up and I'm moving on with my five days of chemo!  No more worrying!  It started Monday, and I spent the night in a hotel last night.  It was really cool checking into the front desk, because it turns out the lady that works there, reads my blog too.  It was a really awesome feeling hearing that, and I really appreciate all of my supporters.

Although as much I'm glad I am moving on with treatment, it doesn't make getting it any easier.  Yesterday I got a lumbar puncture, and the needle hit a nerve in my spine, and then later on I accidently pulled out my needle that the chemotherapy goes into and I spilled chemo everywhere, which sucked for everybody.  Today I just seem sad.  I guess I was getting used to not getting chemo, and being home for weeks at a time!  Now that I'm getting back into the swing of things, I'm getting the joint pain, the headaches, the tiredness and everything else that comes along with chemotherapy.  It bothers me, because when I when I wasn't getting treatment, I was worried something was wrong, and now that I am getting it, I miss home.  There is just no winning with me this week.  But I do have a good book series I've been reading, and hopefully the week will be over before I know it.  Tomorrow is a big day for me, so hopefully it all goes well :)

delays delays delays

Every so often (every month or so) I have to go in to the hospital for five full days of chemo.  I am also supposed to get a lumbar puncture once a month, and take plenty of chemo pills every day.  That is what my treatment plan looks like right now. But I have not had my chemo pills for almost a month now, and I was due to go in for my five days of chemo (5 day stint, is what it's called) three weeks ago.  I haven't gotten any of my treatment because my body just isn't recovering.  I don't have enough white cells for them to give me chemo therapy, because I need white cells to heal.  This is very frustrating for me because the doctors tell me every time I see them, how important it is to take my medication.  Sure, chemo makes me feel like crap for a while, but in the long run I know it is important and will save my life.  So thinking about the long run of things, not taking chemo therapy when I'm due for it, makes me worry about going into relapse, and that is a very scary thought.  The only nice thing about not being on chemo for so long is my hair is growing, fast. I probably have half an inch of hair now!  I really hope that when I do finally get my treatment, my hair doesn't fall out again.

keep your chin up

I'm glad that I make blog posts because sometimes I really need to take my own advice.  I seem to have gone down hill once again, and this time it's been really disappointing.  My new medication that I was taking, that was making me o-so happy, is no longer working as well, but it's not just that, it's that every piece of good news I get, doesn't seem to actually be happening.  I got told that I no longer have any more "planned" admissions, I have had three admissions since then.  I was told I no longer had to have one clinic day every Tuesday, I only had to come in once every two weeks for a clinic day, since then I have had at least two clinic days every week.  My last admission, I was in hospital for shingles, that was when I made my last blog post.  I'm now just coming home from an other admission in intensive care, for shingles again!  This time, I am just a little less pleased.  The doctor says that because my immune system is compromised, the shingles will come and go.  It was also really hard for me to leave my family to go to the hospital this time, because it just doesn't seem like I'm getting better anymore.  More and more bad things seem to keep happening and it was just pilling up on me.  I was definitely losing hope.  So I took a second and I read my last blog post, and I looked at all of the accomplishments I have made in the last little while, and realized that even though I'm having a bad month, there is still good in it.  I may have started this post thinking that it was going to be a negative one, but I'm glad I made it, because if I didn't, I probably wouldn't have read my last post, and would still be in a slump. I am still upset about the things going on, but my thinking has changed, and that makes everything just a little more bearable.

life as we know it

Life as we know it, is hard.  Every one knows that, but what not enough people realise, is that it's all the hard days, that makes us truly appreciate the good ones.  I'm a glass half full kind of girl, and what I have learned over the past few weeks, is to really appreciate the life we are given.  Right now I'm laying in my hospital bed with a bad case of the shingles, but honestly I haven't been this happy in a long time.  Today I got up, had a full breakfast, brushed my teeth and did my exercises.  For most people that's normal and not a big deal, but for me just doing that was huge.  I'm noticing improvement in myself, even though I'm still really sick, I feel great because I'm trying my very hardest to get better.  Its all about your state of mind, I have been laying down in a bed, or sitting around on a couch for almost a year now, and I have lost all my muscle.  To get up and start moving again takes a lot of will power, and strength.  Yesterday I walked beside my mom for the first time in a long time, just walking, not limping or really struggling, and it was so nice.  The point of all this, is that things are truly starting to look up, I'm trying harder and I'm seeing improvement, and for the first time, I can actually visualise myself healthy and getting better.  It's the most amazing feeling in the world, and I plan on continuing forward.  No one should ever give up, no matter how hard it seems.

thoughts and prayers

Someone asked me the other day if I was religious and if not, does it bother me when people tell me they are praying for me. Just to clear it up, I may not be religious or pray myself, however when people tell me I'm in their prayers I really appreciate it.  It is a genuinely kind thing to do and they are trying to help, and hey its definitely not doing any harm.

big step

A couple days ago, I was finally able to go home.  Hopefully I will get a bit of a break from the hospital this time.  This has been the hardest month of treatment I have had to go through but I am now in pre-maintenance!  I've waited ten months for this.  It means that things are finally going to start getting easier on me.  I have gotten through the hardest part of my journey.  Hooray!

news definitely isn't always good

Unfortunately I received some really bad news a few days ago.  One of my friends from cancer clinic passed away.  She was only 15 and had a different type of cancer than I do, but it was really difficult and upsetting to hear.  This is a tragedy that I was most definitely not used to dealing with.  I'm used to seeing treatment plans go well, and yes the treatment makes you sick and sore, but you pull out of it and get better eventually.  It was really surprising to hear, because it was so out of the blue, she just didn't recover one time and I didn't really know that could happen.  So not only did I lose someone I care about, but it also makes me wonder if that will happen to me.  I never really considered death to be something that could happen, I just assumed that the treatments would work, but death is very real in any cancer situation, and that really scares me.