Today I listen to a teleconference sponsored by the Leukemia and Lymphoma Foundation. This is another in their series of helpful educational events, whereby a couple thousand people listen in on their telephones, through a conference-call link, to a talk by a cancer expert. Questions and answers follow. Today’s speaker is Armand Keating, M.D., Professor of Medicine at the University of Toronto. His topic is “Stem Cell Transplantation: Current Trends and Future Directions.”Lest that topic sound dry and academic, let me remind you that, for people like me who may have to have a bag o’ stem cells dripped into our veins someday (or not), the subject has a certain amount of, shall we say, existential interest.
Anyway, one of the items most relevant to my situation came up during the Q&A time. Someone called in, saying he has transformed follicular lymphoma (like me), is in watch-and-wait mode (like me), and may have to have stem-cell transplant someday (yeah – you guessed it – like me). He was asking Dr. Keating to explain some of the factors the docs ought to take into account in deciding when it’s time to recommend a stem-cell transplant.
As you can imagine, the answer to that question is of more than passing interest to me.
Dr. Keating listed the following factors oncologists and their patients ought to consider:- the patient’s age
- the nature of the follicular lymphoma
- the responsiveness of the disease to conventional treatments
- co-existing medical problems the patient may have
- whether the patient is prepared to accept the long-term ambiguity of a chronic condition.
That last phrase, “long-term ambiguity,” strikes a chord. That’s the story of my life right now, I think to myself. I’m living with a lazy cancer that could be life-threatening, but that’s not immediately dangerous. It’s out of remission, but “stable.” It hasn’t grown in 6 months, but it hasn’t shrunk, either. Should I act calm, or worried? Should I press for further treatment, or just sit back and see what happens next? Can I get on with my life, or should I stay in some sort of holding pattern indefinitely? Yeah, you could say “long-term ambiguity” describes it.
Decision-making, in such circumstances, is like trying to nail the proverbial jello to a wall.
It’s interesting, to me, that the doctors have even figured this capacity for hanging around, cooling our heels, into their treatment protocols. “Does this patient have the nerve to wait around, doing nothing, for what could be a very long time?”Turns out you can nail jello to wall. It’s called living with an indolent lymphoma.
5 comments:
Your thoughts today lead me to suggest you might appreciate Dr. Jerome Groopman's book called "How Doctors Think". It can be bought in paperback and is thoughtful and I think useful for people who have illnesses(and those who aren't yet ill) and are in contact with the medical community.
Rosemarie
Thanks, Rosemarie. Dr. Groopman's name keeps coming up in various things I'm reading. I think I'll look for it at the library.
Hello Carl:
Besides the cancer in remission,
did you have or do you have any other medical problems? Just asking.
In my own case was first diagnosed
with Lupus with a subset as it were
of Sjogren's Syndrome, which in turn lead to investigations of both my vision and then the kidneys. And we both know what was in the left kidney! Out with kidney, and part of my spleen. Seems the kidney had developed MALT cancer which had
metastized to my Lymph nodes.
I am like you, in remission. However now other medical problems
come to the fore. An enlarged heart
and I am overweight, by any standard. Now granted I am 6 foot inches tall, however my cardio
specialist wants me to lose it!
In looking at your portrait was wondering if you too have a taste
for the sweeter things in the food
chain? And has your own doctor
made any positive suggestions?
Have one other query. How do you,
in your profession select topics for your sermons? Is there a book
of suggestions (other than the bible) or do the ideas suddenly present themselves during your day
to day activities? Again, just asking.
Methinks Dr. Groopman's book might
be something worthwhile to have on the shelf.
Incidentally the Rituximab treatments that I have been receiving every twelve weeks have
been shortened to every six weeks. Seems there are some questions
about the absorption rate with the
drug. So instead of May 2 for the next round, will be going March 17.
I wonder if they'll give me a green coloured drug that day?
We'll see. Trust the snows of winter are leaving your area.
Bryce Lee
Burlington, Ontario
Bryce, besides my NHL, I don't have any other medical problems - although I am overweight. It's been a lifelong struggle.
The gathering of sermon material is a constant process for me. I file things away, to use later. Most of the time, I preach on the scripture passages of the Revised Common Lectionary, although right now I'm doing a series on the 23rd Psalm:
http://pointpresbyterian.org/site/index.php?option=com_content&task=category§ionid=4&id=17&Itemid=28
Best wishes for your continued recovery.
Carl
Wow Pastor Carl! Your blog certainly sounds familiar... My wife was diagnosed just over a year ago with folicular lymphoma as well and is also in the wait and see mode. We have had to get her pet scans and CT scans five times or so now. Our great news was that since she has been stable for one year now we can schedule the next set of scans four months in advance rather than the usual three months.
I also maintain a blog for her at
www.itsjoansjourney.blogspot.com
She would love to get an encouraging word if you have the time to drop by.
God bless you -
Alan
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