Living with MCL

She was very personable and forthcoming. Not sure how much that had to do with the fact that Jackie (her nurse) likes me, but she did make it a point to let me know that Jackie was glad I was now under both their wings.

Not sure how much she knows about MCL in particular either, but I will help as needed with her training. At least she did take the time to read my file, and even perused much of the literature I had provided my first two (actually three if you count the Fellow, who initially diagnosed my MCL) hematologists.

We talked about the diagnosis, plus a number of other things both related and unrelated to my MCL, and then she proceeded to give the obligatory physical exam, looking for enlarged lymphnodes, and other signs of disease advancement.

At the end, I asked a question regarding new tests to see if my MCL had evolved in the 4+ years since my diagnosis. I got the pat answer, which was since nothing is likely to change, as far as treatment plans go, she didn’t think it was necessary.

I should have responded that depending on what the cytogenetic tests showed, that might actually indicate a change in treatment plans. But the more likely scenario is, based on the way I feel now, I don’t think I would change my mind regardless, so I let it go.

I think the monthly blood work will point out any significant changes, which might indicate a deterioration in my health, in plenty of time to decide on a different plan of action, and I can bring it up again.

Anywaze, the first impression was good, and I go back in two months.

I managed to sleep until 6:50 AM. I know, to some, that may sound early, but for me it’s late. In fact it’s barely enough time to make and eat breakfast (actually Edie makes breakfast), before I have to start getting ready, to meet some friends, for my morning bike ride at 7:30 AM. As it was, I didn’t even have enough time to finish my morning tea.

Anywaze, hopefully this means I have finally recovered from my trip to Italy. Things can only get better from now.

Now if only I could manage to stop or put a hold on the approach of my least favorite time of the year (winter, and the end of daylight savings time), I could really start celebrating.

I hear those terms all the time when discussing medicine, i.e. doctors practice medicine, a doctors practice and going for a second opinion.

Those and similar statements should be the first indication that something may be amiss in the field of medicine. Maybe medicine isn’t an exact science, and that doctors aren’t gods that know everything there is to know about treating diseases. But a recent discussion on an MCL message board I frequent, seems to indicate that, at least a few out there still believe that to be the case.

One person stated

It is my opinion that the patient must choose a doctor after obtaining all information available and even checking with several doctors —- then after choosing a doctor in whom the patient has confidence, he or she must then submit to that doctor’s recommended treatment

Another says

The saying is that if you’re going to be your own d[octor] you have an idiot for a patient. … I was introduced to a young (32, who looked 22) doctor. I asked him his age and where he was from. I was in way to much trouble to shop around. … I’ve never been sorry that I didn’t take the time to shop for a second opinion.

Of course I have no objections to people believing and pursuing such courses of action, but those are individual decisions that must be made by each individual on his/her own. Advocating those beliefs as gospel for everyone is dangerous.

I sure don’t believe that to be sound advice. I have never been of the belief that doctors are gods, and know everything about everything. And if there are such doctors they probably work at a university/research center, and see very few patients if any.

Most doctors/oncologists/hematologists have to deal with a myriad of different cancers, diseases etc. and to expect any doctor to keep up with all the latest research in every area is naive. The only way to ensure you are receiving the best possible care is to be proactive, and keep on top of all the latest advancements related to your disease, while at the same time keeping your doctors informed. Only then can you ever be sure that you are receiving the best possible care.

And with the advent of the internet, that job has never been easier.

There was one thing I learned at the first lymphoma conference I attended in LA, in 2002, shortly after my diagnosis, which I have never forgotten, and that was

NOBODY CARES MORE ABOUT YOU THAN YOU DO!

That goes for your spouse, your parents, your siblings, your doctor, and especially anyone on those message boards.

NOTE: I also posted this at my blog over at The Medical Blog Network, hoping to solicit views from doctors.

So far I have received one comment from Steve Beller, PhD which I found very interesting. It’s a little long, but he does give some reasons to be concerned.

Just when you think things maybe aren’t that bad, life throws you that unexpected curve ball. Not only that, but I’ve been thrown that curve ball three times in the past month.

First my highly anticipated trip to Italy, turned out not to be as expected.

Then when I get back from Italy, an email arrives from the person that typically audits the company I work for, informing me that she will no longer be auditing the company for compliance to AS9100. (BTW, I happen to be the Director of Quality and Metallurgy for my company, and the AS9100 representative.)

And then to top it off, just now when I called to schedule my wife’s car for servicing, I discovered the auto mechanic, I have been going to for the past 17 years, sold his business.

And to think, two months ago, I thought I was leading a charmed life (sorta), and all I had to worry about was my MCL! Boy did I ever get hit with a great big dose of reality.