Rads Day 8: Not so goodPosted: August 3, 2016
The last few days of rads have gone off without a hitch. Today was another story.
It’s transfusion week. When I get a few days out from Blood Friday, I get symptomatic. The symptoms get worse as my hemoglobin goes lower – but even on a good transfusion week, I’m still symptomatic.
My HgB today is 8.8. Normal for a woman my age is 12-16. So I’m low, but this is actually not a bad low for a transfusion week. I still have the following symptoms:
- Headache – like a tourniquet around your head; no pain relievers work
- Shortness of breath – like someone is stepping on my upper chest.
- Fatigue/Insomnia – NICE!
- Emotional Disaster – more prone to stress out and not be able to control panic attacks.
When I first started rads a few weeks ago, I was wondering how it would go when I was low on blood. After last week went so well, I didn’t think there would be an issue. I might be tired but that’s no big deal when you just have to lie on a table for 30 minutes. Right?
It actually started a bit yesterday. I was having shortness of breath and noticed that I was not as relaxed as normal during radiation. Then they surprised me with a new CT scan that took about an hour. By the end of that, I was so anxious and generally uneasy.
Today, it was like the first day I was there when I failed radiation. They had to do xrays today and for some reason, it was taking forever to manipulate me and the machine to the proper coordinates. I had a gigantic headache and was getting dizzy. Then I started to have a panic attack. As I was trying to talk myself down from the panic attack, I just burst into tears. Then I felt the shortness of breath acutely. Luckily, they had just finished the first of the 3 stages of rads. As soon as they came in the room, I moved my non-rads arm to wipe my eyes and they all yelled “DONT MOVE!”. Yeah, too bad.
Then they all noticed I was freaking out and tried to console me. I tried to explain that it wasn’t the radiation process that was bugging me, it was the side effects of needing a transfusion that was making me spazz. They didn’t get it.
At that point it was the second part of the rads, where they put this molded plastic thing on me. It absorbs the full blast and filters the rads down to me. Usually they just lay this thing on me and off we go. This time, they decided to tape it down by strapping it from the side of the board I’m laying on, OVER me, and onto the other side of the board. This did NOT help with the feeling that I had something sitting on my chest and I could barely hold it together. One of the therapists wiped the tears from my eyes, which was totally sweet.
Then it was time for the third pass and I was making noise about getting up and leaving, but I hung in there because the third pass is really quick. Then I booked it out of there. I wanted to skip tomorrow and Friday but the therapists freaked out on me (my doctor is in Chicago) so I finally just said, forget it I’ll be here tomorrow, but don’t be surprised if I don’t make it.
So basically, I’m dreading tomorrow. My mom is driving me because after today’s session it took me close to an hour to get calmed down enough to drive home.
I did send out an email that will make me much loved by my doctors. I think I’ve done a decent job of basically doing everything they’ve asked for but I have to watch out for myself. So I’ve decided to cancel my radiation sessions that occur on Transfusion days. There is only so much I can deal with. I want to take the Thursdays off as well, but I know its not good to miss too many sessions (if any) so I didn’t mention that, although I will be letting them know if it’s transfusion week and if I feel like shit, I’m skipping.
Tomorrow should hopefully be uneventful. I’ll either do the rads or freak out.
Friday may be super easy or a complete nightmare.
My possible Friday schedule:
Radiation– not an issue, decided to cancel. It was supposed to be at 7:15am.
- Chest Xray – Because I STILL have pleuritis and some fluid on my right lung
- Punch Biopsy – Next to my most recent incision on my side, there is a concerning lump. So I’ve been told they want to do a biopsy of it on Friday so I have the weekend to heal before they radiate that area on Monday. Punch Biopsy – look it up. Seems unpleasant.
- Transfusion – 2 units
- Eligard Shot – in my abdomen, puts me in menopause.
- Faslodex Shots -2 of them, Intramuscular (meaning, in the ass) , New medicine to me to stop tumors from growing.
- Amacor IV meds – to help me heal from the Faslodex shots. Being intramuscular, I could get serious infections if they don’t heal up. This medicine will help.
The Chest Xray and Biopsy are supposed to be Friday but I’ve gotten no calls from the hospital that they are even scheduled. The doctor coordinating these two items will be in Brazil starting tomorrow (I think) and back to USC on Monday. So I’m just waiting around until end of day tomorrow to hear if Friday will be horrible or not. Grrrr.
Was very hard to fight on today, but I made it through. I just have to get through tomorrow and Friday. Then it is the weekend and I can crawl into a hole and emerge for tea and olympics.
Go Team USA! FIGHT ON USC OLYMPIANS!!!