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you're not alone

The last post I wrote on here said that as of 11/7 I was out of the hospital and back at home. That was true! Sadly, that was also very temporary. By last Tuesday evening (11/9) the unrelenting nausea and vomiting returned, and I spent the worst night of my life curled up on the couch with the most supportive husband ever. By the middle of the night he brilliantly unrolled the sleeper couch because there was no way I would be making it upstairs.


It went on for hours, completely overnight this time. By morning I called the cancer center the minute they were open, even though I knew they didn't have any appointments for me. But given that I couldn't keep anything down, I knew the first priority would be being seen by literally anyone in the medical community. In a magical bit of good luck, they had a cancelation.


They started with bloodwork, where of course they found that my potassium and magnesium and all the other "this person has mega-dehydration problems" things were haywire. So the took me to see my oncologist who had come in especially to see me, then they put me in a chair for fluids until I could be directly admitted to the hospital.


I was admitted in the afternoon of 11/10, I got out last night.


There's no concern of an infection anymore, my last stint in there showed that it was just a dirty trick my immunotherapy was taking on me. It's making my system think there's an enemy in there so it just attacks itself. The newest assumption after this (final, hopefully) round in the hospital they are treating me as having colitis and ulcers (both of which are not uncommon in immunotherapy patients).


But what does that mean exactly? It means that I've barely had any good solid meals in the last three weeks. It means I carry vomit bags with me wherever I go. It means I don't so much live my life, but just exist in a perpetual state of discomfort and fear.


This time in the hospital I got straight into a room (no waiting around in the emergency department, thank goodness) and was started initially on a clear liquid diet. My first meals consisted of ginger ale, jello, sorbet, a high-calorie clear drink (disgusting), and Italian ice. After a couple of days on that unsatisfying diet plus constant fluids with added potassium, they finally graduated me to real food.


But even that food often didn't agree with me. I have read about tastes changing during treatment but understanding it logically is certainly not the same as experiencing it. Imagine the default flavor of your own mouth changing to something else. In my case, it's slightly sweet and metallic and I absolutely hate it. I hate the taste of water. I can't stand certain foods I normally love. I ordered a peanut butter and jelly sandwich for one of my lunches and, while of course I acknowledge that the quality of the ingredients may not be great, that sandwich tasted like the worst thing I have ever had.


They took me off fluids after a couple of days to see how my body would react, and things were going well. My hope was to be released on Sunday afternoon. But sure enough, Sunday morning I woke up vomiting. They could finally see that it's only a matter of time before the ugliness rears its way in again. This is what makes us keep taking panicked drives down to Manchester for fluids and antiemetics. At that point I had had no success stopping things; once the vomit cycle starts it doesn't end until I'm hooked up to a bunch of IV bags.


At this point the team, understanding more of the issue (now realizing trying the same thing all the time does not work and we must try something else!) set about finding new medications and options for me. By the time I was released last night I had a full new arsenal to fight this issue.

  1. I have something called Scopolamine patches (also known as the patch you can wear on a boat ride to keep you from getting seasick) and I will switch them out every three days

  2. They have upped the dosage and the type of one of the anti-emetics I am using (I was using Odandesetron but I needed the ODT version, I take this twice a day

  3. They have switched up my steroids (back to Prednisone) so that I'm getting more (50mg this week, 40mg next week, etc) -- it'll taper and this should hopefully help me get rid of all the inflammation that is certainly keeping me ill

  4. I now have 2x a day Protonix, which should help cut down on the stomach acids making such a mess of things

  5. Finally, a prescription for Ativan. Though this drug is most commonly used to fight anxiety, it is also effective against the type of nausea/vomiting that cancer patients experience. This one I intend to use sparingly and only when I need it. But it certainly does help.

I know a lot has happened since I last updated. And I normally love writing my updates. But these past few weeks I've truly been too sick to update. It's been some of the most difficult times in my life. I have curled up on the floor with a bucket, sobbing, wishing I was as strong as I always assumed I was. I have spent long periods of time simply focusing on the rhythm of my breath, repeating a mantra that I feel keeps getting away from me ("I'm okay. I'm going to be okay"). Logically I know that how these few weeks have gone does not indicate what my future will be. Today Emily will certainly not be Forever Emily. Forever Emily will remember this one as strong, I hope.


I know you are all here for me. I know I can ask for help. But there are times when I can barely do that. Just knowing you're all there helps immensely. As soon as I feel like my head's back on straight I will try to be more communicative. Thank you for your prayers.

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