A long overdue update

It’s been a rough two months. Not only did I start the Detroit trial in April, I also traveled for personal reasons. I was out of Toronto for most of the month, living out of a suitcase. Travel is difficult at the best of times. My life doesn’t exactly fall under the “best of times” category right now, so everything has been just a little harder to get through.

The drug itself doesn’t seem to be causing any significant side effects. I’ve had some rashes, which have mainly disappeared. There is fatigue, but I don’t know anymore whether the fatigue is from the travel, the medication, the lack of proper nutrition, or simply from a body run down by the combination of these things. I’m tired. Very tired, all the time. I know the answer to this is probably to start slowly building my energy up — taking short walks, gentle yoga classes, getting in a pool — but I am so tired, that even these simple things are daunting.

And then there is my stomach. I haven’t had a good relationship with eating since at least February, probably earlier. Fluid builds up in my abdomen and compresses my stomach, leading me to feel full after eating a small amount of food or, worse, leading me to throw up after eating. For awhile there, any time I ate, I was let with stabbing pains in my stomach until I either threw up, or lay down long enough to let it pass, or both. That doesn’t happen now, but I still can’t eat a normal-sized meal without feeling painfully full. Recently, I started throwing up even without eating. I’ve been experiencing heartburn for the first time in my life, so the nurses are trying to see if there’s an acid problem in my stomach that is causing the nausea and vomiting. So now I take 300 mg of Zantac before bed every night to see if that helps. It’s too soon to say. Coupled with lorazepam and another anti-nausea pill, I seem to be doing ok, though at the expense of a clear mind. It takes me four times as long to work as it normally would, and I’m not entirely sure my editing skills are up to par. But I’ll adjust to the new medication and things will get better.

The weekly trips to Detroit slow down now. I only have to go every other week. This is good. One side effect of the experimental drug is edema in my lower extremities, particularly if I have been sitting for long periods of time. At home, I can get up from my desk often enough, or work from my laptop lying down, so it isn’t an issue. But in the car or on the bus, it’s a different story. The train seems to be the best option because I can walk around at least. But it isn’t perfect. Edema is just another thing happening in the body to contribute to exhaustion.

And the exhaustion is pretty profound. I don’t notice it always, but then it hits me and I realize just how little I am capable of doing compared to where I was last year. Everything is a struggle. It’s reached the point where I have been seriously considering finding a new home for my dog, but how do you find a home for a deaf 15-year-old arthritic lab? It’s not something I ever thought I would ever have to think about but I need to find ways to make things easier for me. That’s just the reality right now.

I’m sorry I haven’t kept everyone updated more as this trial has started and gotten underway. I’ve just been struggling with feeling tired, and not feeling better yet, and I think I really hoped there would be some big significant change for the better right away, but it’s not working like that, so I’m a bit disappointed, but mostly I’m just tired. Just really, really tired. I wanted to have better things to say, but right now I don;t.

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About Alicia Louise

I'm a writer, editor, fact checker, storyteller, events organizer, chronically busy yet endlessly lazy, mildly neurotic (though I keep the neuroses well-hidden, one hopes) 32-year-old with recurrent ovarian cancer. I like people and good writing and straight talk. I have a hard time feeling sorry for people, including myself, but the people that I love, I love passionately; one may even say creepily. I try to keep that mostly to myself. I'd like to be charming, but I'm usually just a mess. I'm like a gull slamming into your windshield.
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9 Responses to A long overdue update

  1. Danny says:

    No apologies necessary for a lack of updates. Your plate is kind if full right now so it’s understandable.

  2. It’s boring and depressing being sick, discovering one thing failing after another, but you’re grinding through this shitty, shitty time and are just as resilient as a goddamn bear made of iron and other unknown space alloys. You’re going to be alright, you’re going to return to yourself because you have to. That’s the way this story is going to end.

  3. Ditto on no apologies needed, Alicia – you’re a superhero. Keep taking it one day at a time. We’re with you.

  4. Sandra says:

    Please don’t feel like you have to have something positive to say – I am just happy to know you are still in the trial. Is there a Labrador Rescue group in your area? If so, they might be able to find someone to “foster” your dog for a while.

  5. Allen Mitchell says:

    No apologies needed, Alicia. Update when you can. I read them all (In fact, I consider them Required Reading).

  6. marillawex says:

    Oh Alicia – I’m sorry it’s so rough for you right now. Sending you lots and lots of love and hopes that it gets easier very, very soon. X

  7. Catherine says:

    No need to update unless you can update. I’m so sorry it’s not yet met your expectations. I hope you can build up that stamina, but in the meanwhile, I hope you can find some help for all those things that are just too draining. So, wishing you support all around. ~Catherine

  8. Ingrid says:

    Alicia, all I can say is to hold on tight. You are in my thoughts. Summer is coming up. I know you know. Beside abdominal pain, fatigue and OC experience, we have also an elderly arthritic deaf Labrador dog in common (mine is fourteen and brown). You can email me if you want me to share how I manage some of the previous:) gridrob at gmail dot com

  9. allisonmaed says:

    All I can do is parrot the previous statements: no apology needed (or allowed!). I can’t believe how long it’s been since April (or… February? Is that when I actually got to see you last?), but I truly hope your energy begins to return. Thinking of you, and sending you as many vibes as will travel to you.

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