At the risk of simplifying things too much or not being medically 100% accurate, I will share what I’ve observed with the cycle of pain management we find ourselves in.

Up until the end of April, mom’s pain was managed through Tylenol and Advil. Then, as a result of the excruciating pain associated with the first chemo side effects and likely the tumour itself, mom has been prescribed hydromorphone which is an opioid.  This had to be done extremely carefully and gradually under close supervision while she was in hospital. And so now this is the drug that’s being used to manage the pain, however it’s not without its own side effects. One of the main side effects we’ve noticed is that anytime the medication is adjusted she gets very sleepy and she says she just “feels out of it” for a few days. The other side effect is that opioids have the potential to cause extreme constipation so medications which help reduce constipation go hand in hand with the opioids. Figuring out the perfect formula for pain management and constipation prevention has been a challenging task. The pain that the hydromorphone helps with can very quickly become an equally severe pain from cramping, bloating and constipation. Add to it mom’s chronic diverticulosis and it could be a perfect storm. Taking the anti-constipation medicines can also cause its own cramping and pain.

 

While a person is in pain, they don’t feel like eating.

A person who doesn’t eat, loses weight more easily.

When a person loses weight, they are weaker.

When a person is weaker and/or in pain, they aren’t able to get out as much,

or get to do the things they love as usual,

or stay in touch as much with the people who matter to them.

When a person loses weight, their clothes no longer fit properly but since they are weaker, they don’t have energy to shop for new clothes.

When a person is weaker, they can tolerate less of the demands on their body when it comes to treatment, or day to day activities.

 

Telling apart the pain in the abdomen can be a very tricky exercise, and knowing how to treat it can be equally tricky. Take more hyromorphone or take a laxative? Take anti-cramping medication, or will that in turn cause more cramping? When a person gets constipated, the oral medication becomes less effective, because they cannot absorb it properly, and now the pain grows, the medications don’t help, and it becomes extremely challenging to know what course of action to take in order to relieve the pain.

Something along these lines happened last week. And now we are managing the next cycle – which is the hospital stay and the medications there. When your body isn’t able to absorb oral pain management drugs, you need to get them through IV or subcutaneously (sub-Q) which for mom is in the shoulder. This allows the medicine to get into the bloodstream a lot more quickly, however the challenges of the medicine causing constipation continues. Ironically receiving the medication subcutaneously is also incredibly painful as it stings and needs to be given very slowly.  There are numerous prescribed medicines mom is currently being given trying to manage all the abdominal pain she is experiencing. While in pain, she isn’t able to drink as much so she needs saline via IV, and has been on a liquid diet for the last three days to give the stomach and intestines a break and a chance to clear out. When a person doesn’t eat, they are weaker, getting out of bed can be tricky not to get lightheaded… the cycle continues. And then there is one more factor – that none of this is predictable. Things can change very quickly from a pleasant environment to a tense environment where things are being monitored minute by minute, hour by hour.  This is very difficult on mom and all of us witnessing it, often helplessly.

Lastly, when a person is only able to absorb medicine via IV or sub-Q, they cannot be released from the hospital. And so the journey continues, hour by hour, day by day. It is often a matter of trial and error in finding the best ways to get mom feeling better, which can be both frustrating because of all the suffering associated with it.

After a very tough weekend, we are encouraged today by small steps in a more positive direction. They are baby steps but deserve celebrating nevertheless.