Saturday, October 23, 2010

Day -6 and Day -5

Checked in to the hospital yesterday, but late. My bed was not ready for me till about 4:30pm so we got here around 5pm. It was all very weird. It was like "come on it and get set up, but we are not going to show you around or anything." So it was uncomfortable. We had to ask our way through it. Supposedly this morning they told us that is not how it should have been. Not sure I totally believe them yet. I didn't start my chemo till about 11pm last night for a 3 hour infusion of Carmustine (BCNU) (the "B' of my regimen called "BEAM").

I was awake through most of it and fell asleep at the end. Paul is staying with me last night and tonight. I got to see my Zane-Man last night!!! He is just the most adorable thing in the world to me!!! It was so good to hug him, kiss him, touch his hair and look into his eyes. Looking into that kid's eyes makes my goals get even more focused.

Checking in last night was hard. It was hard to unload the car and then walk into a building and know that you will not step back out for 3 weeks! Paul was helping me move in and as soon as I stepped foot in the lobby I had to turn around and walk right back out. It was hard to breathe and I started crying which I have surprisingly been staying pretty calm through the rest of this last week, but walking in here for this was a different story. Pretty understandable, I know. I finally got my ass through those doors and then was just overwhelmed, frustrated and weepy through the check-in and settling into our room. I just didn't know what to do. It was weird. They showed us to our room and pretty much left us there for 30 - 40 minutes without anyone coming in.

Then, "POW!!!" met with:
Physician's Assistant
Oncologist on call
Oncology Nurse
Was wheeled down for a in depth chest x-ray.

But the first night was ok. I was up late but once I slept I slept till about 8am. Pretty good for a hospital. Of course I had to pee about 3 times but I never count that.

Zane and Mom are about to come up here for a visit. Then they are heading back to Naples. She will come back on Sunday night to spend the week with me and Paul will be heading back to Naples Sunday night.

This morning I am getting an infusion of Cytarabine ("A" of the BEAM regimen) and the Etoposide ("E") over a three hour total infusion. Then this evening I will get that again. I will repeat this dose twice a day through Tuesday.

Other little side notes:
- They give me a new toothbrush every two days that is super soft bristles. This is do that my mouth does not get scratched up because Mucocytis is really common with this regimen. (mouth sores, infections, sores in your esophagus, etc.)
-They give me big bottles of saline rinse for my mouth to swish with every time I am in the bathroom to keep my mouth clean for the same reasons
-I have to pee in a plastic "hat" every single time. They measure my output so they know that the chemo is flushing out of my system and my bladder is handling it.
- If I poo, (yes, I know... but it is part of it) I have to put rubber gloves on to wipe because of my immune system will be so low I can not deal with possible bacteria from that.
- They do my vitals every 4 hours (day and night) (blood pressure, temp, oxygen levels, listen to my chest)

This is just the beginning. This will only get more yucky FIRST then of course... it will get better. In the meantime, this sucks. I have awesome support though and I love you all so very much.


  1. A little retreat was a needed thing and then you charged ahead with the Awesome Force of Danielle! When you feel too yucky, I'll beat my chest and roar for you!

  2. Anonymous7:39 PM

    All we can do is focus on the end, one day and one week at a time.I hope your mom told you that is almost impossible to talk with you, I can never get through a sentence.I want to stay brave, but the tears just start to flow, even now while writing this email.I can hardly bare to think about what you're going through, it must be very, very hard and I wish I could help you. I pray for you several times a day and think of you almost always. You'll kick this, I know it! You have more people than I can count rooting for you.Good things "do" happen.xxooNANA

  3. Anonymous2:36 PM

    Any update on an address? I know you can't receive flowers, but how about CD's full of new music.. Music lasts longer and warms the soul.

  4. I just love you damn much it hurts. xoxoxo

  5. Anonymous5:59 AM

    Danielle I wish I could be right there at your side. In spirit I am. Thinking of you and sending you all the healing love that I have to give. I hope that you can feel it. We are with you through it all.
    Tim and family