Week 13 & Round 3
So after rescheduling round 3 I started to feel a bit better. Then on Sunday I felt really off - like I needed more steroids - and this only happens when my body is under a great deal of stress. All I could think was "great I'm probably going to get sick again"... lo and behold by Sunday night I was ill. Hard to say what it was - but I felt horrible like very achy and flu-like with some nausea. I did not sleep a wink Sunday night - my husband also felt horrible. On Monday I was really aggravated because I was set to leave again for treatment on Tuesday. I then found out that there was a horrible bug going around my daughter's school - 6 of 8 teachers had been out and about 1/2 the kids. It seemed to be what we had - adults were really achy and fluey with stomach issues and the kids seemed to get more out right vomiting.
Anyway I was completely stressed out but my husband reminded me that I've never felt great while going to get treatment so I decided to go. I flew out on Tuesday and was feelng slightly better. When I landed I found out that my poor daughter had slept much of the day at school with a stomach ache. So she got hit as well. My husband took a red eye out that night and met me Wed morning (the saint that he is) to take me to treatment.
So on Wed I received round #3. It went pretty much the same as last time -I started with fluids, steroids, benadryl & tylenol. Then about 1/2 way through my Rituxan infusion I started feeling like I was having a hard time breathing - this happened last time. They stopped the infusion and gave me more benadryl (which when given via iv also makes me feel a bit funky) and then let me sit for a bit. Then we were able to get the infusion up and running again. They were able to get the rate up to my max of 350 (I didn't like 400 the time we did that).
A difference was that this time my stomach pain started during the last hour of the infusion. I have been doubling up like crazy on ppi's and antacids trying to stave off any gi upset this stuff causes me. But I don't know if it's going to get really bad again - and I don't know when that would be. The first time it took 2 weeks, the second time was immediate because I was already in pain and this time...? Sort of nerve wracking not knowing when that pain will hit.
That night I had a hard time sleeping as I knew I would (big dose of steroids makes me 1) angry and 2) have insomnia). I drugged myself with some benadryl though to get some shut eye. The next morning I was absolutely exhausted - thankfully the hotel was nice enough to give us a very late check out since our flight wasn't until evening. So I slept all morning and then pulled it together for the flight. Other than the idiot sitting next to us storing his clam chowder in the overhead bin for 3 hours of our flight (who does that??? and then eats it!!??) the flight was fine. I'm severely allergic to seafood though so was less than thrilled when he pulled down his chowder mid-flight. Seriously. Who does that?
Today has not been great - I'm glad to be home in my own bed and I know that it will take me a couple weeks to feel more 'normal' and I know that it's going to go downhill before coming back up. This morning I think I forgot that i had treatment - or that I should be taking it easy - and was up making breakfast, etc. Then I was very very tired and very very dizzy and just felt really icky. Some nausea and definitely breathing problems. So more benadryl, tylenol & a nap. This evening I was really having problems feeling like I could breathe. but benadryl is helping so my guess is that it's a reaction of sorts and hopefully in a few days will be on it's way. Not being able to breathe was my first symptom when I first became ill - so I hate feeling it. Just trying to remember that I need to give everything a couple of weeks and that I'm sure this next week is going to bring more worsening of symptoms and I 'll just have to deal with them.
On a side note, I spoke w/ my friend who works over at Genetech (on the oncology side) and was told that the protocol that I am doing - essentially every 3 months - is extremely common in oncology for maintenance. So it's not too surprising that a couple of oncologists were the ones who put together this protocol for CFS.