New pain requires a new regimen for managing it. So now I’m taking 180 mg of oxycontin daily at regular times, three 60 mg doses every 8 hours or so. (Starting two days ago.) Then to smooth over or catch up with pain in the even to the infamous “breakthrough pain,” there are 5 mg oxycodones to take (the difference being that these are not time-released and the oxycontins are). For about three weeks or so I was experiencing consistently more pain and there was no more effect to be had from hoping that the NCPB (the “block” procedure) had actually done any good.
I’m also at the mini-milestone of just finishing my first week of taking the glyconutrients. These are being taking along with the latest round of chemo, to make that totally clear since one person I heard from was surprised and thought I was taking the supplements in place of chemo. Statistically, empirically speaking, however, if I were to quit the chemo at this point that would mean it’s time to schedule final visits with everyone. So that is not part of my treatment plan right now. The point of the supplements was precisely to try one more avenue of treatment that wouldn’t hurt but might help, but not to endanger myself more than necessary. I got enough of what feels dangerous as is.
In other areas, now that the dust from moving and a number of guests has settled, I’m thinking it might be time to get my head shrunk once more. Or maybe a few times more, depending on how it goes. The process of psychotherapy is always complex, potentially, and when terminal illness is involved I dare say this is exponentially more accurate. My shrink, referred to me through the SCCA, did her training in psycho-oncology, a sub-field I was unaware of before my life took the radical oncological turn. Having trained in how to do psychotherapy specifically with cancer patients — though she will only use the term “survivors” — makes her extremely valuable to me, however, despite that she is younger and has perhaps less experienced with Big Life Issues, if I might generalize, than I would have preferred. But what do I know?
Picking a therapist’s got to be a gut thing, no pun of course, as much as an intellectual thing. And all things considered, now, I feel like a paid sounding board might not be bad. I’ve come farther than the initial prospects, that is, lived longer, but also there is every indication to believe that that fact also means the months remaining are becoming increasingly, what, precious? Just more to process, more unexpected experience, some more practical issues. All these weird phenomena that get labeled under the category “end of life” issues.
Even after all this time, “all this time,” of being sick and knowing what’s coming I still feel the 2 x 4 feeling now and then, but it’s slower and I feel like I can see it coming. So I stand there, or sit, see the thing swinging my way and wait patiently. More of a dull thud than something sharp and sudden. Like the first time I heard, the first no hope news. And yes I know my mother and maybe a few others complain and protest whenever the words “no hope” pop up, yet, I don’t feel it’s responsible to ignore that news . . . it’s getting muddled, in fact, trying to explain my way through this. Which should point out how difficult an issue this is to work through. It may not make a world of sense, so it’s just words getting passed along, and that’s the point of forum, no?
One other point, since I’ve been off line for a bit and slacking in the blog world, let me ask, are there any issues I’ve missed and haven’t been talking about that anyone wants to hear about? I know there has been a restaging, slight changes in treatment, a move, etc. and there’s a good chance I’ve missed some things. So please just post a comment if there is anything.
Franky Scale: a 6 plus today. Quiet and somewhat more painless, so that’s a “plus.”
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1 comment:
Hey Mr. jones:
I have a couple of questions.
First, about the glyconutrients --- have you noticed anything different in
how you are feeling since you started taking
them ? better or stronger ? Or nothing ?
I am all for them
but remain fuzzy about what they are supposed to do. ( I hope I’m not the only one ) Build up and strengthen your immune system ? Replace “nutrients” that
the cancer and chemo are taking away from you ??
Would you recommend them ? or is it too early to tell ?
Another question, have you been able to see your therapist or get an appointment
with the pain clinic?? especially the pain clinic-- I would hope “they” would get you in ASAP.
The 2 X 4 feeling, the dull thud--- though I am not the one with terminal cancer,
is horribly painful and disorienting.
As one of your siblings, I often wonder if people understand that your family
and loved one’s go through similar phases, have similar feelings that you do? Mine consist of
Fear, angst, anger -- not so much the shock now, as the
ever present fear of what might lie ahead for you. It is always in the back
of my mind, or right in front of me. So therapy for me is absolutely necessary.
My Dr. Melfi and my regular doctor, have become a part of my safe circle.
For me-- I notice that I am just generally less expressive, more contemplative
and more pensive. “In My Own Little World” of thought-- so to speak.
And then, sometimes, usually when I’m driving in my car, a wave of feeling smacks
down on me--- BAM !!! and I am once again tearful, filled with grief, unbearably
sad and in some altered state of shock and disbelief, as the thought of losing you,
your not being around forever, consumes me.
It is paralyzing.
I say this, not to worry you or cause you to think I’m not strong---
but in thinking about death ( which I don’t like doing ) I often wonder about the difference
between losing someone unexpectedly, like how I felt the night Sue
came up stairs in the middle of the night, waking us from a sound sleep, saying to Lefty and I: “Daniel’s dead ..” It initially seemed
like she was joking, something very surreal. Until the REALNESS set in.
I became sick to my stomach, went to the bathroom and just hurled.
His death, that experience still haunts me. The pain in the pit of my stomach
is so very easy to recall. I don’t feel it all of the time but it remains close-- as I know
it will forever.
As do many questions. Could I have done more for him? What should I
have done to make his life easier ?? Was this an avoidable event ??
the questions of “why” and “how” still follow me around. I wasn’t through knowing him yet.
I apologize to my sister Sue and her kids, my entire family, knowing this tragedy brings back horrible memories and pain.
This process is painful and hard. With you and your situation, we I have been given the gift
of some time, to ask you questions, to learn to listen to what you are feeling, to learn more from you. And some time to express my feelings for you. But it is not enough-- not nearly enough. And even now I sometimes still feel nervous, probably don't ask the right questions or give you the type of support you need.
And yet, that is all I want to do.
That, and take away all of the PAIN.
I HATE that you are uncomfortable and in pain.
Stupid, stinking, senseless cancer !!!!!!!!
Like Mom, I can’t help but wish for and hold on to hope for some kind of miracle. Your having cancer doesn't make any sense.
You have already beaten the odds. I just hope you you will continue to do so. You have always been amazing and remarkable-- so mentally strong.
I love you brother-- and appreciate all of your kind and gracious friends and loved ones
who are there to support and be available for you. I think they like you a bit too. : )
Your circle of friends and loved one’s appear very unified and consistent in
their support and caring for you.
They overwhelm me.
Just some questions and thoughts---
that make time feel anything BUT MUNDANE.
If anything, it becomes more precious and invaluable and something NOT to take for granted.
Love you Mr. J:
Slarry
Turkey Day Is Coming. Your bathtub awaits you : )
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