Friday, May 28, 2010

Day +9

Yesterday I had an all-star cast of caregivers which is exactly what I needed. I had the same nurse for 12 hours and her energy never faded throughout the shift. She was efficient, friendly, and genuinely happy. She was always smiling and humming anytime she was in the room. It was exactly what I needed as I was very tired and lethargic as it's been many, many days since a good night's sleep (as I write at 4 a.m. ...), but her energy was contagious. It's all about attitude. Another nurse who I had my first day was back to help out with my transfusion and I love talking to her because she has been working with stem cell transplant patients forever and is incredibly knowledgeable about it all. She helped me more fully understand what is happening in my body at this point in the process. One of my favorite PCAs was back that always calls me Miss Diamond. And, even the woman that transported me to a CT Scan was so talkative and friendly.

It was a busy morning. I received another transfusion of platelets and a repletion of magnesium. They also drew yet another set of blood cultures because of a fever the night before. Again it took three nurses to pull from my arm vein. Now it's just comical. I just look away and focus deeply on my breathing.

Unfortunately I still had a few fevers. I'm hovering around 100 and got up to 101.3 at about 5pm. All the blood cultures keep coming back negative for any viral or bacterial infection, which is good. Dr. Cooper ordered a CT Scan yesterday to take a closer look at my chest and upper abdomen to see if there is anything going on there as I've had persistent dry coughing spasms especially at night and in the morning, but that's been happening for weeks. Preliminary results showed nothing that would be causing a fever and revealed that my lungs look nice and clear – also very assuring.

My white blood cells are just about fully recovered now so they are thinking that if I did have an infection, my body would be strong enough to fight it. Therefore they have stopped the IV antibiotics and I am just continuing on the oral ones –some of which I will for six months as part of the protocol.

Rather than an infection, what we are now looking at as the fever cause is an inflammatory response happening in my body due to all the action in my bone marrow and all of these young, vibrant cells taking over the tired, weak chemo-compromised ones. Sometimes as the cells graft together the body can mistake the new ones as invaders and react causing a fever. This is not uncommon in transplant patients.

As of yesterday evening's talk with Dr. Cooper, after the next fever we're going to try a course of steroids (prednisone) to calm my body down and reduce the flare-ups. If the fevers go away after that then the mystery is solved and I'm free to go home. I believe the steroids are a few day course so I don't expect to be going anywhere anytime soon ... .

With my contact precautions now lifted Craig and I were able to spend some time in the healing garden yesterday which was nice – and we can now hug instead of fist pump which is double nice. We spent the afternoon watching funny movies and doing a little napping.

Unfortunately I'm still hooked up to the IV pole for regular saline maintenance fluids. It's certainly getting old being tethered for nearly a week now and I'm going to ask the resident this morning if we can discontinue that too since I'm having no problem eating and drinking. If it means I have to drink 18 pitchers of water a day I'll do it if it means I don't have to lug this thing around with me. My taste is certainly not fully recovered, but it's much improved and therefore so is my appetite. I'm told it could take weeks for my tongue to react normally again to flavors.

It's really not so bad here though. The room is so spacious, I have my own bathroom, shower, and fridge, and I have a couch and a recliner so I don't have to be in bed all of the time. What I love most is the view I lucked out with. I can see all the way to Sleeping Giant mountain with so many lush, green trees and a beautiful red rock formation to marvel at. Last night I could see the bright lights of a night game in a baseball stadium and that made me smile. The night before I witnessed an awesome lightning display – full sky to mountain strikes. I've never seen a thunderstorm so vivid. My view is to the west so I've caught breathtaking sunsets every single night.

I'm happy to have a new plan of action and hoping that these steroids do the trick and I can bust out and take a long, deep sleep in my own bed – after a good tennis ball fetch session with Sammy of course.


  1. Over the first few days of this week, I noticed you hadn't posted and was worried but kept praying, figuring you were just resting. I am super happy to know you are doing just fine. You continue to stay in my prayers, as I marvel at your positive spirit and appreciation for the teeny things that really make the world go 'round.

  2. You are on your way! You sound so much better. Can't wait for you to have that time with Sammy and your own bed! Can't wait for a blog post from your front porch. You are almost there! Until then, enjoy that wonderful window view! :) Lynn

  3. what an amazing view. you still have the energy and intuition to appreciate the simple spectacular, like a sunset. thinking of you