The palliative care doctor ~ pain specialist ~ dropped in for her visit yesterday afternoon. She talked to Mathew for a little bit and then her, John and myself retreated to the dining room for a review of Mathew’s medications.

The discussion started with the possibility that Mathew’s headaches are metastasized cancer. The only way to know if there is a tumour in his head is to do a CT scan. That would require a trip to the hospital. Keeping that information from Mathew would probably be near impossible and this topic is something that he just doesn’t need to know or worry about. Then, IF, the CT scan revealed a growth…. well, what? The only palliative treatment (aside from pain medication) would be radiation.

Radiation would require numerous trips to the hospital, creating the radiation mask that bolts his head onto the table during treatment, plus side effects that are not pleasant. This plan would not extend Mathew’s life, it would only be to reduce the tumour, if there turned out to be one. Which no one knows he has or not.

Nope. Not doing a CT scan or anything else. Mathew has negative associations with the hospital and would panic and probably refuse to go. Remember also, he has not left the house in two months. TWO MONTHS.

Ruling out a CT scan and radiation, in the event of a tumour in his head, the other option is pain treatment. This is the option that makes the most sense. The other factor in the decision making process was to keep Mathew home if possible. This makes changing medication a little trickier because stronger drugs mostly require an in-hospital stay for monitoring and evaluating new drugs. We decided on a plan that will keep Mathew at home.

The first change is to increase Mathew’s long acting morphine dose to 90 mg every 12 hours. He was receiving 4-8 breakthrough doses daily and this step should avoid all that additional dosing. He received his first dose last night. He slept through the night!! First time in forever! His second dose was this morning and there were no side effects seen. His speech was fine, he acted normal and so far received one break-through of 10 mg only.

In fact Mathew took his first shower in weeks! It was a great change from sponge baths and much easier and quicker to do. Although he worried about a shower draining his energy level overly that didn’t happen. Given his frequent and drenching sweats it is good to use the hand-held shower head to wash the grime off of him.

The second change made to Mathew’s medication was to introduce Clonazepam to hopefully replace the Ativan. Remember I said the Decadron has a less than desirable side effect of mood instability? That along with increased pain levels and just the stress and anxiety of dying…. explains the uptake in his Ativan dosing. Ativan is a 4 hour drug whose effect is similar to a roller coaster. The Clonazepam is a long acting equivalent of Ativan that is administered once a day. Mathew started on a low dosage of 0.5 mg this morning. It didn’t kick in soon enough so he also got 1 mg Ativan when the good ol’ Decadron affected his mood. He got the Ativan this morning and so far hasn’t required anything further. The Clonazepam can be increased if he stills needs multiple Ativan on a daily basis.

The third change to Mathew’s medication plan will happen on Monday night, when Nortriptyline is introduced at a 10 mg dose. This is a drug for nerve pain. It is given once daily.

See a pattern emerging yet? Rather than frequent, short acting and break–through medications the doctor is switching to longer acting remedies. The changes are introduced gradually so Mathew’s health care team can determine any side effects of each medication. If everything was introduced together then it would be hard to know which drug caused an undesirable effect.

If the 90 mg of morphine doesn’t work then the doctor is considering adding a more powerful drug…. called “Hydra~ or Hydro~” something. Whatever it is she did say it is 5 times more powerful than morphine. It can also be introduced to him at home while many other drugs would have to be started as an in-patient on the palliative care ward.

As an aside to this, I learned that there are two doctors on the palliative care team. One doctor works the floor at the hospital while the other one does the community/at-home visits. They switch periodically. They are used as a consult service in our Province (New Brunswick) while the overall care remains with the primary family physician and Extramural.  After our visit the doctor will send the treatment suggestion plan to Mathew’s family doctor for implementation as necessary.

Whew! It was a busy and productive meeting. Our discussion ranged over a few topics, another one being Mathew’s gradual muscle weakness. It is harder for him to get out of his bed even with the bar the occupational therapist brought over. Mathew has neck and arm pain from struggling to use all of his resources to move about and get in and out of his bed. Along with his weight loss there is also muscle loss, partly due to cancer and probably also due to residing in bed. The palliative care doctor said that back pain is frequent as those muscles weaken, something which Mathew remarks on when he sits. After a short while his back hurts him too much to stay sitting.

The respiratory therapist visited two days ago; Hi Bill! Bill reads my blog! Neither of us know how he learned about it existing but he finds it useful because I supply frequent updates on Mathew’s daily life. I never thought of that. Bill didn’t realize the blog is also a useful tool for family to receive updates which minimizes repeating the same information through texting and phone calls. Mathew gets upset when I spend any time not concentrating on him. It also helps family plan visitations. My blog was never private or “hidden” but sometimes I am surprised by visitors! Once I knew Bill reads the blog I shamefacedly asked what is official title is since I forever change it; he laughed and replied he knew I meant him. I have the correct title now and will keep my good manners in writing!

When I write on here I am always aware it is a public forum and try to maintain an objective and fair discussion. There were maybe one or two instances where my anger definitely flowed onto this page but those were justifiable circumstances and I stand by my words. It is not my intent to harm or cast a deliberate negative light on anyone; rather to share information from my personal perspective. Hopefully in a friendly and neutral manner (ha ha ha… no one EVER said my opinions are neutral!!)

Okay back to the respiratory therapist. He took Mathew on a short hallway trip and noted his oxygen stats and listened to his lungs. I thought Mathew’s resting stats were 92% and 118 heartbeats per minute, but I think Bill put down 93%. No matter; the oxygen level dropped two points when Mathew walked and his heartrate increased by 20 points. Both of the lower lung lobes had decreased oxygen flow, the left more than the right lung. Bill will be visiting every 2 to 3 weeks to keep an eye on those stats. He is a very nice, friendly fellow whom Mathew enjoyed talking with.

On days where we visit with a doctor overseeing Mathew’s care, John and I find it hard to wind down after. They can emotional visits that drain us both. I did not fall asleep until close to 4:30 am today and spent the day in a sleepy fog. After John got home from work I crawled over to our bed and descended into a wonderful nap that only a very comfortable mattress set allows. That mattress on the floor is a godsend but in no way comes close to matching a luxurious box spring and mattress set!!

Mathew seems to be on a slight down trend again. For the third day he sleeps more and is up for a shorter period of time. This morning was the first morning he woke up feeling okay and not in a “terrible” state. His headache is back and plagued him today. It is on the left, front forehead area. The cyst behind his ear is big again and I assume it will drain once more in the next week or two.

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