Hi,
My excitement over having very few chemo side effects was waaaay too premature. As it turns out the worst of it started just when I thought I would be feeling better from any side effects. I'm not sure how I missed that detail.
The day I saw Dr Mintzer about the sunburn rash, exactly one week after treatment, he probed me with questions about side effects. I happily said that other than the rash, I just had a couple of mouth sores that day but otherwise, everything was good. He said to call if anything happened, and especially if I discovered a temperature over 101, to call immediately, 24/7.
Thursday I had a few more sores, but I knew it was a chemo rash I had read about and it wasn't very severe, so I barely mentioned it. I picked up my brother & sister in law, Dave & Ellie, from the airport. We had a nice evening, but I noticed during dinner I probably should have made something less spicy. The next day I was feeling those sores even more, but we headed for a taqueria. (I highly recommend the mole at Taqueria Michoacana!) We thoroughly enjoyed ourselves and I didn't really suffer. That's the only way I can remember when the sores became a nightmare. It was when I woke up Saturday morning.
Saturday was Eben's birthday and I got up ready to get lunch organized and the cake iced and decorated to his specifications. Very fun to have him involved. Problem was, my mouth was completely on fire. I used a baking soda + salt solution in very warm water as a rinse and that would hold it off for about 15 minutes at a time.I also was pretty chilly. It was a cool, cloudy day, so I didn't think much of the chill.
By the end of the day we had had Birthday Lunch and gone to see the Phila Union play and beat by one point the San José Earthquakes on a goal by the player Eben wanted to get the goal. Yay! My "lunch" was a slice of cake & some icecream in a blender with extra strawberries and almond milk. DELICIOUS!! but it ended up being my entire caloric intake for Saturday. At the game I shivered under five layers of clothing and a sleeping bag while everyone else sat in shirtsleeves. My brother kept feeling my forehead and asking "how do you feel?" I answered, "like crap," but when anyone else asked I just said, "good! How much longer?" I really wasn't going to ruin Eben's birthday. Two years ago I got hit by a car on my bike on his birthday. Really, at what point does this start to look like attention-seeking behavior?
When I got home I finally took my temp. It was 102. I called my doc's service and was told to go to the ER and call back with my white blood cell count. I got a spot in the ER at about 8pm and was admitted at about 1am and didn't check out until 2pm today (Tuesday). I've never been in a hospital that long, not even to have a baby.
My white blood cell count was very low, a condition called neutropenia. It had caused the mouth sores as well and the fever was a response to some infection that needed to be treated. Blood and urine cultures were taken to try to discover the cause of the infection, and antibiotics were started immediately. (Both blood and urine were ruled out after 48 hours as causes of infection.) An antiviral was started but then discontinued when a virus was ruled out. The sores are called mucositis, not caused by a virus. The lack of calories & caffeine, and the pain in my mouth probably caused the temple-to-temple headache.
In order to treat the neutropenia itself plus all of the symptoms, I had a huge bunch of drugs coursing through the IV tube, through shots and orally. Orally, and via shots, Tylenol to reduce the fever, Neupogen for the nutropenia, and a blood thinner shot a couple of times to prevent blood clots (I was in on the cardiac floor!). Via IV, two varieties of antibiotic, and two alternating varieties of anti nausea meds for the nausea all of this was starting to cause about a day into it. And then the pain meds: The first was Dilaudid but it wore off way before it was time for more. They switched me to morphine for almost 24 hours, but that started making me nauseous and not helping the headache, so we gave that up and went to my old friend Percocet. I also received an oral anesthetic for my mouth called "Magic Mouthwash." I am not kidding, that's what it's called.
By Monday morning I had given up trying to eat anything. The "magic mouthwash" was also nauseating by that time. All I had to eat for all of Monday was one vanilla Ensure. By the end of the day though, I was being told that things were looking up. My white blood cell count was rebounding. I could probably go home tomorrow. It took until almost 8pm for me to really believe it. They could see it in the results but it took about 4 more hours for me to feel it after that. I knew I was recovering when Ellie made me laugh so hard my cheeks hurt, but my mouth did not. I had a good night, and I woke up feeling really good. I ate some breakfast and a good lunch and then I was given my walking papers. I came home with plenty of energy and I am back at work tomorrow.
The day after my next treatment, I will get a prophylactic shot of Nulasta, which is a longer-lasting version of the Nuepogen. I was just reading up on why this isn't standard issue for chemo patients and the reason is because there are some side effects to it that you might not want to line yourself up for if you aren't one of the 40% who will become neutropenic after chemotherapy.
I was visited by a team of three doctors during my stay, an oncologist at Bryn Mawr who was in touch with my Penn oncologist and two infectious blood docs. The oncologist told me on Sunday when I was feeling just god-awful (but not yet at my all-time low), "This is just a garden variety reaction to chemotherapy, nothing to worry about... once your white blood cells recover all of these symptoms will go away." She was right! They did. It's amazing. At the time I was ready to be put out of my misery. 36 hours later I was good as new.
It was Dave & Ellie's first visit in ages, and Eben's birthday. What a drag. Well, it wasn't dull.
Have a fun Cinco de Mayo! I might have to find another Taqueria to try out.
Love,
Diane
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