Diagnosis | Living with MCL

Fatigue

Cycling, Diagnosis, My MCL 2 Responses »

Apr 132009

I’m sure I pissed off a few people on the MCL message board today with my comments about fatigue, and I’ll probably piss a few more people off with this latest post, but I can’t help myself. I actually enjoy sparking controversy sometimes, it helps get the juices flowing, not to mention fatigue is one of my favorite topics, second only maybe to discussions on the US health care system, or lack there of.

There seems to be constant discussion about fatigue on all the message boards, not just the MCL board, but it all boils down to lymphoma survivors claiming bouts of fatigue, after chemo, a transplant, or just from having lymphoma, without any logical explanation, e.g. low hemoglobin (around 10 g/dl), EBV, CFIDS, all which can be checked for.

I have to admit I am of the opinion of most of the doctors, who have little sympathy for these patients, that fatigue in the absence of a low hemoglobin etc. is mostly psychological.

Certainly there is the fatigue associated with receiving chemo or getting a transplant, but that is just the body’s natural reaction to be infused with deadly chemicals. I liken it to how I feel after an intense 70 mile bike ride.

I’M WHOOPED!

But eventually I recover, and in a day or two, I’m good to go, and do it all over again.

I’d even be willing to give all the sufferers of fatigue the benefit of the doubt, that going through chemo and/or a transplant is a lot harder on the body then a simple bike ride, but it doesn’t change my belief, in the absence of a low hemoglobin etc. fatigue is psychological.

I am fatigued every freakin’ morning, and just trying to get going is by far the most difficult thing I have to do every day. It would just be so simple to stay in bed, or sit on the couch all day watching TV, wallowing in my sorrow, feeling sorry for myself.

I just refuse to let it get to me, and I force myself to get out of that bed, and do something, whatever it is [usually a bike ride or golfing], because I know the more time I spend doing absolutely nothing, the easier it is to keep doing absolutely nothing.

So my advice to everyone is to get your butts out of bed, or off the couch and do something. You can start off slow, and build up your endurance. It will take time, but you’ll feel a lot better about yourself, and then you’ll even have that logical explanation for feeling fatigued.

Is it just that I’m getting old, or…….

Diagnosis 2 Responses »

Mar 112009

Here it is 6 AM Wednesday morning, it’s 48°F outside, and it’s still dark.

I remember just last week at this time, the sun was starting to rise, and I was already preparing to meet the group at 7 AM for a bike ride, but now it’s an entirely different story. It will barely be light at 7 AM when I get to the marina, and it will definitely still be dark when I have to leave the house to meet the group.

So here I am, drinking my tea, having already gotten up late, and instead of starting to get ready for my ride, I’m blogging.

How depressing!

I hate the rain!

Diagnosis No Responses »

Dec 222008

Of course I also hate the cold, wind, fog, etc. but today it happens to be raining, so I’m hating the rain.

You wouldn’t know that if you were looking at the Live Mega Doppler 7000 HD, courtesy of the local ABC news channel. In fact, you wouldn’t think it was raining hardly at all. At least you wouldn’t think it was raining as hard as it is, but trust me when I say, it is raining outside, and raining rather heavily, for Southern California that is.

So here I sit with Continue reading »

Social Security Disability?

Diagnosis, Edie, General Health 3 Responses »

Dec 132008

Edie received an unexpected large check today from the US Treasury, designated “SOC SEC FOR INS”.

The only explanation we can come up with is her application for Social Security Disability was approved, and this was just a retroactive amount since she became disabled. The strange part is there was no paperwork with the check, nor did we receive any notification her disability had been approved prior to today.

Seems strange, we wouldn’t have received an explanation prior to receiving a check, but maybe the government was just anxious to get some money into our hands so we could help the troubled retail sector.

Or maybe it’s just our share of the TARP funds, and everyone will be receiving a similar amount shortly

Not sure how to feel

Cycling, Diagnosis, Edie, My MCL 1 Response »

Aug 192008

Just got my latest blood work today, and I don’t know whether to be happy or concerned.

My lymphocytes dropped from 120 thou/cumm to 93 thou/cumm, which is good, but my hemoglobin dropped to 11.6 g/dl, my platelets dropped to 185 thou/mcl and my LDH was up to 160 IU/L, which are all bad trends. (No mention of polychromasia.)

Now while my hemoglobin and platelets have been down at those levels before, this is the highest my LDH has been since it was at 153 IU/L back in January.

[BIG SIGH] I just hate this! The prospect of starting treatment any time soon weighs so heavily on my mind now, especially since Edie has decided she wants to try and go for the transplant again, I can’t seem to think rationally any more.

I’m hoping racing at Eldorado tonight will clear my mind.

The Last Lecture

Diagnosis 1 Response »

Jul 262008

You’re diagnosed with a terminal illness, and given 3 to 6 months to live. How do you respond?

I’d like to think I’ve responded in a positive manner, and I’ve tried to inspire others into realizing exactly what they have, and how to get the most out of life, but I’m really not much of a writer, and I’m not even sure how good a job I’ve done achieving that goal. Fortunately there are those who seem to have been born with the ability to motivate and inspire.

Randy Pausch, who died of pancreatic cancer on July 25, 2008, was such an individual, and before he died, he delivered this inspirational Last Lecture, “Really Achieving Your Childhood Dreams“, which to date has been seen by over 6 million people around the world. It’s a little long (1 hour 16 minutes), but in my opinion well worth watching.

…we don’t beat the Reaper by living longer. We beat the Reaper by living well

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A little about me

Hi, my name is Marc [that's my wife Edie beside me], and I have Mantle Cell Lymphoma, a typically aggressive form of lymphoma, except it so seems in my case.

I was diagnosed over 10 years ago, and have managed to survive since then without treatment, by following a few simple rules. Eat a [mostly] well balanced diet, exercise (cycling, at least up until recently), abstaining from taking supplements or any medications, drinking 5 to 6 cups of [Japanese] green tea a day, and most importantly [lots of good wine], flossing and brushing my teeth twice a day, everyday.

I started this blog mainly to chronicle my life, putting down in writing what goes through the mind of a cancer survivor (although I have been seen straying into unrelated areas on occasion), and along the way help educate others about lymphomas and other blood cancers, and filter out some of the hype and misinformation so often associated with the internet, which unfortunately there is plenty.

You can read a lot more about me by clicking here