Week one after treatment

People keep asking me how I feel.  I find myself at a loss what to tell them.  I mean really we've all been sick, but how often does one take an infusion that completely decimates ones immune system?  I have no frame of reference.   Perhaps I should just talk about the infusion and write the next post about after.

It started 2 days late because I got a uti.  Also that day my friend died so it really sucked.  So two days later than expected I started. The first day I met a new friend who is undergoing the same treatment.   He is two days in and reassured me that I'd be just fine.  The first day was an hour of steroids.   4 hours of lemtrada and 2 hours of monitoring.   On 3 types of antihistamines,  a viral blocker, tylenol and anti inflammatory.  Oh and a heavy duty sleeping pill.   Spoiler alert it didn't do anything.  So the first day was a cake walk.  An awake cake walk but still.

The second and third day were pretty the same although I felt a little weaker
I also had begun to swell up.  Which surprised me considering how much I had to pee.  Now because I started late I took the weekend off (not by choice) I also requested that Monday I have another round of steriods.

Someone should have probably stressed the importance of keeping up with meds because I know what happens when you don't.   We will call it flu like symptoms but throw on exhausted.   Oh and joint pain. 

Monday rolled around and back with the steroids. Monday night the total amount of sleep was one glorious hour.  Tuesday was my final day and I was sick.of the commute.  Then I slept.  And rested.  I'm bored to tears but hey my body is working hard.  The swelling in my tongue went down and once again I have ankle bones and wrist bones.  The infusion nurses were pretty good at putting iv in so I'm not even that bruised.  By the 5th day they found it hard to find veins in my swollen alabaster skin.

I've also taken on a strange grey sickly colour.  That was kinda scary the first time I noticed it.   I also have had heartburn for now almost 2 weeks and I wish it were done.  I look at my flowers from my parents and wish they were here.

Lemtrada

Well I'm on the cusp of a new treatment.   I lost a dear friend to cancer yesterday and today is my daughter's 16th birthday.   16 years just flew by. 

This new treatment is going to destroy my T and B cells in Hope's of resetting my immune system.   So I'm going to be vulnerable and I'm feeling pretty vulnerable too.  I get to be locked into an infusion chair all day from 830 to 430.  They are giving me all the antihistamines gravel steroids  sleeping pills.  As my eloquent doctor put its gonna "f@#! You up really good"  I also appreciate my doctor swearing woth/at me.  Shows he is human.  No God complex there.

I'm hoping for hyper thyroidism because hey skinny again would be nice.  I could also get a myriad of scary things like losing my thyroid or my kidneys some weird bleeding disorder.  But I doubt I'm going to be that unlucky.


So I'm going to be stoned all week so my family and friends should expect so awesome texts.  I am disabling my credit card so I dont spend 200 dollars on candy crush again.  Yes it happened during medicated vertigo treatment .  Stoned Pam is not fiscally responsible. 

Also I'm really scared.  Its important to acknowledge.  I'm doing it anyway.  I've never been one to stop out of fear.  I experience it so much it's an old friend. 

So today is a mixed bag again.  I'm weepy because I miss my friend.  I'm weepy for his bride.  I'm weepy because my baby girl is growing up and I'm weepy for me.  So while my family cleans I'm resting.  Drinking lots of water to get rid of the uti that cropped up friday and hiding in s blanket fort.

Pray for me.