This message may come to you with a little less clarity than in the past as I attempt to rise to the surface of the sea of bubbles caused by waves of Hydromorph Contin swirling around my brain. You may think I'm mis -spelling or mispronouncing Hydromorphone but no, the long acting version is called Hydromorph Contin. I may have shared this with you before but a review of how this opioid drug works is important for anyone to have a basic working knowledge of if you're ever faced with this kind of ordeal. Actually I didn't even know there was a different name until this past week so couldn't have talked much about it.
After signing off on my New Year's post, the next few days indeed led us to the conclusion we'd been dealing with confusing results of the cat scan from December 6th. What we thought was a whole layer of side effects from the Letrozole, we've learned is actually a mix of side effects as well as a cranky liver from the last chemo treatment which was December 5th. I'm not just sure when this realization came to light other than to tell you on January 2nd I sent an email to the Nurse Practitioner for my file, outlining the situation at the time. Nausea creeped in and out for which I started taking Metonia which causes sleepiness.
When I realized the biggest problem was the pain in my left middle back, moving to the right side and my granddaughter saying I looked 'sort of yellow', which Mike confirmed as well, it was time to wave the white flag to say something besides side effects was going on.
In we went the next day, Thursday, January 3rd, to being told they might have admitted me based on the information in the email, but, thank goodness, I looked too well and they would let me go home!
We decided the best next step in my case was to keep on the Letrozole as it's only been a couple of weeks since starting treatment and it only makes sense to give it a fair chance to kick in to provide the hoped for results of containing the growth of the mass.
The next step is to get back on the Hydromorph Contin 'dual clock' regime which goes something like this:
Hydromorph Contin has its very own clock of treatment,
Every twelve hours a prescribed dose is taken, no more, no less is spent.
But what happens in between you say?
To keep the pain as far as possible away?
Another clock is wound with time, a pace its very own,
With 2 mg. every hour or two, depending on how the pain has grown.
The two clocks do not meet or touch or cross one another,
They're set and reset by patient, caregiver, one or d'rother.
The sense of success comes when the twice daily 'contin'
Has no more 2 mg. 'break through' come a callin'
You may recall I've been taking a form of Tylenol called Tramacet for quite a long time now. Since liver enzymes were elevated, it was time to call off the Tylenol class of drugs.
In summary, the chemo has run its course, liver enzymes are elevated, some bilirubin possibly creating blockage, all of which turns us to being as kind and gentle as possible with my liver.
We also got into the conversation which caught both Mike and I off guard but, in the end, we're glad we had. It was about what happens when the time comes and we're at the end of the road for treatment. When the topic is raised it's hard not to shy away and leave for another day even though it's what we'd all desperately like to do. And so, as it stands, whenever the time comes, and no one knows in any definitive terms when it might be, realistically, it could be a few months or less as the liver starts to present external signs of failure. At that point you start to have discussions about the practical things in life and what you hope to achieve by the end.
We came home on the 3rd of January quite shaken with the discussion which, in a good way, gave us cause to pause and reflect on the reality of the future.
On January 8th we returned for our regular return visit, took the time to explain our surprise at where the subject went only five days ago and here I was feeling quite a bit better.
Dr. B. reassured us we are still on Path A which is to let the Letrozole run its course until early March, at least, after which a follow up cat scan will be done to check the effectiveness
of the plan.
Today we met with the Palliative Care Team, including Nurse Practitioner (N/P) who did a full review of the bit picture then narrowed it down into a 5 step plan with a further follow up in two weeks.
I was going to share the short a la carte menu with you but don't want to create any confusion with anyone wondering if 'my plan' would work for them, never mind their brother in law's, second cousin removed, best friend's mother. Every one has their own plan to suit their own situation.
Needless to say I've been laying very low since January 1st blog post and the fog isn't in any rush to lift anytime soon. Last Friday I was to prepare homework for my Friday art class which I worked on diligently, with many attempts and nothing working out as I'd hoped so I laid it aside, went to bed only to finally crawl out after noon which was almost the end of class. Otherwise it's been a quiet time.
On that note I will sign off, wish you the best for the next couple of weeks and, God speed, write again on the 31 of January.
Take care, hugs and
God Bless,
Liz
dobbsjones@gmail.com
"Prayers wrapped in faith and sent with love are the greatest gifts we can receive.
