Monday June 29th I had my mid PET scan done at the hospital I'm doing treatment at. I was happy that they got me in and started right away! They did things a little different than the hospital I went to for my first scan. Maybe because this hospital specializes in Cancer, they know exactly what they can get away with.
My first question to the tech-- Do I have to drink that nasty drink? (Remember the horrible lithium battery fluid whatever it was?) She said NO! Apparently they do them to get really intricate detail of stuff below your stomach. Since they're lookin above that, I was good not to.
I was so happy. It seriously made my day. I still had to sit in the napping room for a while (I think it was more like an hour and a half this time.)
They didn't use my port to put in the IV chemicals. Since she wasn't a nurse, she wasn't trained to access ports. So I was completely ok with her just using my arm.
I was so tired, but of course I couldn't sleep. Not a comfy chair, IV in your arm, half/lit room, 10 in the morning, hungry..... but NO nasty drink! I'll take it!
The scan this time was harder for me to hold still. I had a hard time "breathing normal." haha. It's whenever someone tells you to "breathe normal" that you freak out and forget how to breathe.
Anywho- all done and they will tell me the results at my appt the next day.
Whiz on to the NEXT DAY
I wasn't even that nervous for Chemo #5 because all I could think about were the results from my PET scan!
For labs they access my port and it was tender, but not bad. I can tell that this is going to go a lot easier having it.
I go in for my appointment and find out that my blood pressure is really low. Like, she takes it a couple times to make sure. 90/56. Woof. Apparently that can be a side effect from chemo.
I see my doctor and we go through my questions and prescription refills and all that. I keep getting lip sores, acid reflux, constipation, and hot flashes. All pretty normal.
I finally get to talk to him about "Bulky Disease." I looked up some information on mediastinal masses (like what I have) and found that if mine were .3 of a centimeter bigger they would have added on the "bulky disease" to my prognosis. .3 of a centimeter is not that big. That scared me, but doc assured me that treating even bulky hodgkin tumors are very successful.
We go on to see my PET results. He brings up the images of before and after. I teared up. I mean, you see how huge it was before, and then you look and it's tiny in comparison. Before it was lit up like a Christmas tree and now it's barely lit. I was so happy to see that the Chemo was working. It was tricky doing something so difficult for two whole months and not knowing how it was effecting me.
My doctor isn't the type to jump up and down and be all excited, but he did say that he was pleased with how the prognosis was working and that he though that I could opt out of radiation. He said that just 4 months of chemo probably wouldn't be enough, so I'd have to do 6 months of chemo if I didn't do the radiation. That really bummed me out because I realllllly dislike chemo, but if it's what's best for me---then I'll survive. His opinion was that he tries to hold out on doing radiation if at all possible.
He gave me the option though. So it's my decision. I kinda don't like that. I'm really good at following instructions. This is a big decision. So 6 months chemo? or 4 months and radiation?
(I joined a Hodgkins Lymphoma awareness group on facebook and asked if there were any like me and what their treatment was.... seems like people like to opt out of radiation when they can.)
(Top before, bottom after 2 months of chemo)
After my appointment, it's chemo time.
Using my port was SO much better than using my arm veins. It didn't hurt AT ALL going in. I even told one of the nurses that she would owe me a cookie if it did. I lost. Good thing I didn't see her again, I hate losing.... plus I didn't have a cookie. haha.
The nurse that was over me today was really fast. I liked how he was really cared and was trying to get me in and out. I appreciated it and really hope that I get him again!
Just like normal, I start getting woozy in the chair and then an hour after I got home I started chattering, freezing, and became weak. Every muscle was aching. I was so restless. Brett was trying to warm me up, slow my breathing, and help me in any way.... but there just isn't really anything you can do when your body is shocked and poisoned!
Brett turned on beach sounds and I tried to relax and train my mind to think I was at the beach. I don't know if it helped, or if time took it's toll or what, but I finally started feeling better (hours later.) BUT I started getting really hot. Brett took my temperature and I was at 103! Since I was so weak, it was hard to take off a layer of clothes and blankets, so I just cookin! For the next couple of hours we just tried to keep my fever down. Brett was not on board with calling my doctor (because they probably would have me go in for a fever that high.)
I think this may have been worse than my first time getting chemo. Maybe it's because I'm weaker or something? I just have to remember that it's temporary....
So far no lip sores this time around, I had some pretty nasty nausea, and I overdid it the weekend of the 4th, but I'm learning as I go and hanging on tight. I loved being able to see family this last week (my whole family was out here!!!) and it helped lift my spirits.
I started feeling better Wednesday night, but my kids got sick this week!!! AHHHH!!! My mom thankfully was in town and came down, but then she got sick too! I've been washing like crazy and in a mask 24/7. Pray that they get better and we can all be healthy as possible!
