My relationship with “Maybe…”

It’s a simple enough word. Not quite yes, not quite no – just lands somewhere in the middle. I find myself responding to event invitations with this word on a fairly regular (read: nearly always) basis.

I almost NEVER go out after work, because it is incredibly rare for me to have enough energy left at that point in the day to be any fun. Weekends are generally my only opportunity to have a social life, and even that is rare. Saturdays are the only day I feel confident in committing to, as a rule. I know that I can have Sunday to recoup if necessary. I always feel so guilty when I turn down event invitations – I get eye-rolls, and “Yeah, we figured you wouldn’t want to come”. What people don’t understand is it’s not an issue of not wanting to, it’s an issue of knowing that, unlike most people my age, I have to conserve what little energy I have, so that I can meet my responsibilities.

It’s difficult to explain to people who don’t experience energy (or lack there of) in the same way that I do. I get it, I’m only 31. There is seemingly no reason for me to turn down opportunities to go out and have fun. Trouble is that I do not have the same energy levels that the average person does. There are several analogies for energy…the spoon theory for one, my own sandbag theory of energy… but suffice it to say, I and my fellow MPN patients know that fatigue is the number one symptom that we have to deal with.

For any non-patients out there imagine the following: No matter how much you sleep, you never feel rested. When you do get the opportunity to sleep, it won’t come easy. All day you feel so tired, yawning, struggling to make it through the work day, only to get home, and the moment your head hits the pillow feel wide awake. Or better yet: You fall asleep instantly, only to wake up to pain a couple hours later, and then be stuck awake for hours after, trying to ignore the pain, but it is the only thing you can focus on. And this is Every. Single. Night.

This is incredibly frustrating for anyone, but especially frustrating as a relatively young patient, struggling to live life with their peers.

Long story short, I am tired. Tired of saying “maybe” all the time. Tired of being tired.

As always, you are your own best advocate. If you do not stand up for yourself, who will?

Until next time,

Lina

 

 

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Blood Cancer Awareness Post 19: Clinical Trials

After my little rant yesterday about fatigue, we’ll get back on schedule today and talk a little about clinical trials.

What is a clinical trial? A clinical trial is a series of tests, research and drug development that helps to determine the safety and efficacy of a new drug treatment. They also document all of the adverse reactions seen during the trials.

There are several phases involved in a clinical trial, beginning with pre-clinical- non-human trials to test toxicity and determine what happens to the drug once introduced to a living organism (pharmacokinetic information). After they determine the general safety of the drug, they start testing the drug on healthy volunteers. The doses administered start as sub-therapeutic (less than a dosage that would be used to treat a patient), but do increase over time. This phase tests safety and efficacy of the drug. After the phase for healthy volunteers is completed they begin testing on patients. The doses given here are standard therapeutic doses, but it is presumed to have no therapeutic effects at this point of the trial. The next phase requires a larger number of participants (1000 or more). These patients are given therapeutic doses and at this point the drug is presumed somewhat effective. After this phase, the drugs are typically marketed to the public (under FDA recommendations and guidelines). At this point the long term effects of the drug are monitored, and research is continued on the data that was collected during the study.

To find out what clinical trials are out there, and whether or not you qualify, you can visit http://www.mpnresearchfoundation.org/Clinical-Trialshttp://www.nhlbi.nih.gov/health/health-topics/topics/clinicaltrials/links.html, or http://clinicaltrials.gov/

Tomorrow we’ll be talking about support groups.

Until tomorrow,

Lina