Sunday, March 29, 2015

Four Months and Counting

These are my peeps and even those that aren't pictured - AGW has been my family - my support of the last 4 months along with my other buddies - Shelly, Voula, Kim, DeAnne and of course my wonderful hubby Jeff.

It's been crazy these last four months.  I have gone through 3 cycles of chemo and in 10 days will begin the cycle for the stem cell transplant.  Over spring break I am having my stem cells taken and frozen in hopes of doing the transplant right when school is over.  Funny thing - I can't wait to have it done because then maybe I will begin to feel like me again.

These last 4 months have been up and down, up and down and up and down.  I don't know whether I am coming or going half the time.  Every time I think I am ok - oh no - I'm not something happens.  I have some kind of effect to a drug or the chemo or I catch a cold or worse I get the flu.  I haven't had a fever this whole time - well that is what I thought - until these last three weeks - between the cold and the flu - it just happens.  Yesterday of all days - no chemo this week - just a terrible cold that kept me away from school for three days - I was depressed and didn't feel like doing anything.  Along with the depression came the cold sweats and chills and I had to change my clothes three times - where did that come from - who knows.

I can't plan anything - every single time I do something happens and I have to change my plans.  I hate it.  This disease has control and I don't - I want control back.

In February - dummy me - was experiencing cold sweats and chills, couldn't keep my fentynal patch (which is the narcotic for pain) on my body so I thought well let me take it off. DUMB, DUMB, DUMB move - I had it off for three days and went through the worse experience that I could - withdrawal - and oh my I thought it was the end.  It wasn't and yes it may seem like I am exaggerating but believe me the way I felt I was ready to say forget this I am done.  Finally we figured out the issue, put the patch back on and after about 24 hours I started feeling good.  I never realized how much medicine was going through my body and hey that is why I was hurting there was no pain meds to help me.  Thank the Lord, they are weaning me off this medicine so I can hopefully manage the pain in other ways throughout the experience.

Flu and cold - shouldn't get it had the flu shot.  Hahaha - funny to me - got the flu then got a terrible cold.  Who knew that the chemo affected me so much - my immune system is really low and everything that hits me hits me hard.  I don't know how to handle it.

I hate not being myself.  I hate not having control.  I just want it to be over.  I want to feel like me again.  I hate being a baby - I hate crying - and that seems to be what I do the most.  People have said that I am strong - well guess what I don't feel that way.  If I was strong I could just pick myself up and go about my day the way I used to.  I can't do that anymore.  I hate missing school - I hate not being there.  To me being a teacher is what I do best - but not this year.  I hate not being involved and I feel that I let people down.  I feel like a burden.  Thank goodness my team has been so wonderful to me - I don't know what I would do.  Not only my team, but my whole school - staff, admin, paras - everyone has been wonderful - but I still feel like a burden.  They tell me not to but that doesn't help because I still do.

Today is Sunday March 30th and I look around my house and I have things to do - what will I get done.  It is a toss up because who knows how I will feel.  I have been up since 4 doing odd things in the kitchen - was hungry so had some toast and just stayed up.

Speaking of toast - my taste buds are wacky.  Some days I have no clue what to eat - oh except for red jello - that seams to work every day and maybe an orange - they help some days.  Things don't taste good.  We have had some amazing and wonderful dinners - thank you AGW peeps - you have been so so awesome - dinner is something I used to love to do, not so much anymore.  Jeff has been great with heating things up and then when I don't want what is in the frig a ham and cheese sub plain from Little Italy has been my go to and he goes up there and gets for me.    A treat this week from Maria - lemon meringue cheese cake from Cheesecake Factory - yummy yummy yummy - 4 nights of treats.  I am always thirsty and then some days whatever I have is not enough - or if I have too much I get sick.  Things that I used to love - not so much anymore.  

I really hate missing school - want to be there every day but that doesn't happen.  Days I think I am going to be there - I can't get up to go because I didn't sleep the night before, or I have a cold or I hurt.  This week I have a bone marrow test - yuck - worse one - hate it.  So I am out Wednesday and Thursday - not only do I have to worry about the plans I have to worry about the kids because my room is used for testing so they can't be in my room - the pits, but no one's fault except the Feds and State because of so much damn testing.  

My biggest concern - how much of a burden.  People say I am not, but to someone who is used to doing for others, having others do so much for me is hard.  I don't like special treatment but feel like I get it.  I want my life back.  I want to be able to do everything I used to but I can't.  

I hope after the stem cell transplant in June - I can get back to my life.  I want to be myself again.

Everyone in my life has been wonderful - they are there for me.  I have a hard time thinking how can I repay all the kindness - I don't know but I am working on a plan.  

All the special moments - cards, texts, dinners, emails - everything everyone has done for me - thank you - it helps every day.  Some days there are tears of joy because I am loved and some days there are tears of sadness because I feel sorry for myself.  I shouldn't - there are others who are so more worse than me.  I try every day to see the positive but like I've said some days it is hard.  

Say a prayer - smile at someone - it helps.

I think this is a rambling - trying to get things out so I don't keep them bottled up - will try to post more regularly

I thank everyone who is along this journey with me - with your help I know I will get over it - just when I don't know.







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