Rads Day 8: Not so good

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:

  1.  Headache – like a tourniquet around your head; no pain relievers work
  2. Shortness of breath – like someone is stepping on my upper chest.
  3. Dizziness
  4. Fatigue/Insomnia – NICE!
  5. 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?

Wrong.

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:

  1. Radiation– not an issue, decided to cancel.  It was supposed to be at 7:15am.
  2. Chest Xray – Because I STILL have pleuritis and some fluid on my right lung
  3. 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.
  4. Transfusion – 2 units
  5. Eligard Shot – in my abdomen, puts me in menopause.
  6. Faslodex Shots -2 of them, Intramuscular (meaning, in the ass) , New medicine to me to stop tumors from growing.
  7. 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!!!

 

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4 Comments on “Rads Day 8: Not so good”

  1. elizabeth lamar says:

    Oh, Pam, what an ordeal to go through. I think of you whenever your car is gone. I thought your Mom probably had to drive you – amazed that you can do this most of the time on your own. In spite of the panic attacks you are strong in your determination. Best of luck to you the next couple if days. And thank you for keeping things posted. I, too, am an Olympics fan – intend to watch it all. Perhaps not the team sports as I like individual challenges. Guess you are competing in your own Olympics. Best to you.

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  2. Steve Smith says:

    Hugs my friend

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  3. Tracey Nowicki says:

    Bless your heart, as we say in the south. There had to be a hiccup didn’t there? ;(. I’m reading all of your post and pray for you throughout the days. You are amazing but I know you’re getting tired. It is your life and YOU decide how you want to live it. You are on of the most educated women I know regarding your disease. This is a discussion between you and your body so if you two decided to take a couple of days off, so be it. The Drs have sworn an oath to do everything they know to prolong your life. They often forget how important quality is. Hello Kitty trucks are part of the sprinkles that bring smiles to us. It’s a sucky few days but somehow you always bring the good into them. I wish I could be there to cry with you. I’m so blessed that Matt brought you into my life. You make me smile with all of your FB post. You’re my sister who takes every day by the horns and makes sure the world knows you’re a part of it. I love you dearly and stand beside you in spirit. Xoxo Tracey

    PS- are you wearing oxygen during your treatments? Yours Sats may be fine but we want your Hgb to carry all the oxygen it can hold. See if the techs will put you on 3 lpm. Maybe it will change the elephant to a kitty. 😉

    Sent from my iPhone

    >

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  4. Lori Lewis says:

    You are SO amazing. I so admire your courage in standing up to the docs to advocate for what you need & want. So many people never do this and it increases their stress (and illness) needlessly. The fact that you are so in tune with your body and your emotions is I’m sure a huge factor in how well you’re handling things overall. Hang in there, Trojan, we are all with you in spirit and are pulling for you. I hope today and tomorrow are much easier than you’re anticipating and the weekend even more restful. Love you! xoxo ❤

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