Treatment

 

My last treatment three weeks ago I was at Lahey for 11 hours.  I got there at 8:00am and closed down the joint at 7:00pm.  I asked if there was anything we could do in order to make it not as long of a day.  We decided to break up my appointments.  I would see the doctor and have my lab work on Thursday.  If I needed fluids and mag/potassium I would get that on Thursday.  Then come back on Friday for my treatment.  

Sure enough my numbers were low so I needed both mag and potassium.  It took two hours for my fluids and supplements.  Thursday I got there at 8:30ish and didn't leave until 12:30 ish.  Another long day.  

Friday I got there at 8:00am.  Got my premeds, started my pemitrixade around 9:00am and got comfy for the long haul.  My Pemitrixade is only a 10 minute infusion.  But it can't be run with the Amivantanab.  I started by Ami about 9:20.  My sister went to take a work call in the cafe-I assured her that I would be fine and not to worry.  This wasn't my first rodeo, and in fact after I got through the desensitization I had been doing well.  What I didn't take into account was that I had weaned down to no steroids 2 days before my treatment.  You see the steroids make it difficult to sleep so I talked with Dr. Piper in September and he agreed I don't need them for the Ami and they can give me the steroid in as a premed for the Pem.  

The nurses usually hang around the first couple of mins after hooking me up to the Ami.  I get it on a super slow rate and the first hour the increase it every 15 mins.  Within 5 minutes the nurse asked if I was feeling okay.  My legs had started to get restless, my chest was heavy and I started having trouble breathing and my skin got blotchy.  Ami was turned off.  I received a dose of Pepcid.  And later received a dose of Benadryl through my port.  The doctor/Nurse practioner was called to check on me.  My vitals were good.  The doctors decided that we weren't going to rechallenge it yesterday (they have in the past and my reaction gets worse).  So we called it a day around 11:30 and i got to go home.  Grabbed some lunch at Cava (so incredibly good!) and then headed home.  I went straight to my bedroom to lay down for a nap.  The thing about benadryl especially when it is given into my port is it knocks me out.  I took about a two hour nap.  The thing about the steroid is it makes me wired.  So I got up around 3:00.  I was exhausted and laid in bed before dinner.  After dinner I went to lay down again.  But couldn't get back to sleep.  Thank you steroid.  So last night I pulled an all nighter.  I finished a series I had been watching did a couple of puzzles on my ipad, colored a couple of pictures.  And cried untiL i had no tears left.  I got out of bed at 8:00 am.  And here we are-8:00pm and I am heading to bed.  

Good night!!!