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It's been a lousy week

I don't know how others manage, but for me it's just getting harder and harder. Ever since Edie informed me of her latest test results on Monday, I have really been in a stupor.

Just getting out of bed this morning was a chore, and I didn't even enjoy the round of golf with the Eldorado mens club yesterday.

Even riding my bike offers little enjoyment, although when I am on my bike I seem to be able to forget most of my troubles, as I struggle to climb a hill or just to keep up with the other riders. It also helps in controlling my weight, as I have this almost uncontrollable desire to eat. So I force myself to ride.

Still that only lasts for about 3 or 4 hours a day, after which reality sets back in. It's one thing to be sick yourself, and deal with the consequences, but when someone you love is sick, dealing with that also, well..... that's a whole 'nother issue.

Edie does manage to put on a happy face most of the time, as I do, but I know how that is. It doesn't mean your problems aren't in the back of your mind constantly, it just means you don't want to burden everyone else with your problems, and have them feeling sorry for you.

I know this post doesn't sound much like I'm trying not to bother everyone else with my problems, but I just had to get that off my chest.

Oh well, such is life! Enough with the frustrations, now it's time to get ready for my bike ride.
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lmarsico said…
Hello
My father was recently diagnosed with MCL - well, to be exact, three weeks ago. We are all somewhat in a daze - especially me since I have been reading every article , blog, site on this disease. My dad has has NHL for 2.5 years , indolent in nature, but has since changed. He is 71 years old, has various other health issues, cardiac and renal ones. However, he is a fighter !
I found your site and well, it made me cry but also gave me inspiration to ensure that my father get the best care possible.
Thank you for sharing your story, your life with all - it is extremely daunting to come down with such an illness, however it is our attitude and determination to stand out, be different and survive in whatever way we can that makes all the difference. Thank you.

He is due to get a spleenectomy as his is quite enlarged. He will be treated at Hackensack, NJ by Dr. Goy, we also went to Memorial Sloan Kettering for a second opinion and was basically told the same regime of chemo would be recommended - CFR...

I am overwhelmed because I feel that doctors arent in tune with patient's care at times. THe bed side manner is non existent - as if my father is a merely another statistic. This makes me extremely upset yet also empowers me to continue researching and not giving up on him just because he has cancer. One doctor told me - well, he may have 3 years - max. I was extremely taken aback by his quick comment - and well, my dad who does not know this, will not be returning to this physician. I want him to be treated by someone who wants to help him, moreson than merely giving him a shorter life span, no hope, etc.

I need to go thru your entire blog and read about your specific treatment - as I am interested if you received the same chemo treatment. Have read tons about CHOP but that is not what they are recommending - any thoughts and advice would be welcomed.
Once again, thank you for chronicling your life - your story - and being honest. I wish you the very best

Take care
Lourdes marsico
Age 36, mommy, wife and daughter to a most wonderful father.
10:10 AM
Marc said…
I know how it is. It can be very overwhelming at times, but fortunately there is a lot of information to be had, it's just a matter of being able to filter out the good from the bad information.
The most important thing, which you obviously have already discovered, is having a good doctor.
In your father's case, splenectomy's alone have proven to be very effective in producing long term remissions in certain cases.
It is an extreme procedure, however, and there are other complications, including having to take antibiotics for several years (or possibly forever), and the possibility the NHL will move to the liver, which obviously isn't a good thing.
But I am surprised at the recommendation of FCR. Fludarabine is extremely immunosuppressive, and is typically used for cases of chronic lymphocytic leukemia (CLL). I am aware of others using it for NHL, but it is rare, and I believe because they have been refractory to other more conventional treatments, i.e. CHOP + Rituxan.
The real problem, which you may have discovered as well, is no matter what you choose, it's all really just a crap shoot. Unfortunately medicine isn't an exact science, and what might work for one may not work for another.
As for me, I have not had any treatment yet. Although my MCL is progressing, it is progressing slowly. Don't know how much longer I can hold out, but I am hoping for at least a few more treatment free years.
Sorry I can't be of more help, but it sounds like your father is in good hands.
11:40 AM
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