During all this time researching, talking to doctors, to others with lymphoma or other cancers, to my friends and to anyone else I may have come in contact with, I have learned so many important things. It has really changed the way I look at life, and has most certainly rearranged my priorities in life.
I still do have my ups and downs, but I try not to dwell on things as much as before. Lots of people get sick. The fact that I got sick, while it certainly wasn't something I planned for, is a fact of life. To think that I or anyone shouldn't, wouldn't or couldn't get sick is really an egotistical attitude. Now I just try to look at life as something to cherish and to enjoy. I think the tagline that I use at the end of emails says it best - "The future is just a concept we use to avoid living today".
But besides dealing with life, I have learned a great many more things that are vital to anyone fighting cancer or any other disease.
The first thing, and the one thing above all, that I learned at my first Lymphoma Research Foundation conference, is - "NOBODY CARES MORE ABOUT YOU THEN YOU DO!". That includes your wife, your parents, your brothers and sisters. If you don't advocate for yourself, no one else will ever do as good a job. If you have cancer, or any disease for that matter, don't ever lose sight of that fact.
The second thing I learned is our commodity driven health care system sucks. But that doesn't mean you can't or won't get the care and treatment you need. You just need to be sure you are a good advocate for yourself, or have someone you can trust be your advocate if you are unable. (Keeping in mind what I said previously - "NOBODY CARES MORE ABOUT YOU THEN YOU DO!" )
Stay totally informed. All doctors are not created equal. There are good and caring doctors, and there are just the opposite. Not all doctors are driven by the profit motive, but if you don't stay informed and advocate forcefully for yourself, you likely won't get the desired care or treatment. Remember, you are not your doctors only patient. He likely has many patients, all needing care. Doctors are not gods. They are only human, and many times can get overwhelmed. Just be sure to stay on top of everything. Read the literature, know what the latest advances are (the internet is a wonderful tool), and ask your doctor about them. If he is not aware of them, and he is good and caring physician, he will appreciate the fact you have kept him informed. And if he isn't, get a new doctor.
As far as my particular lymphoma is concerned, based on at two specific tests I had during my vacations to France and the UK, p27KIP1 and VH Gene mutation, plus some additional routine markers I have concluded that my variants of MCL is on an indolent course. And so it has responded as such for the past 3 years and 8+ months.
That doesn't mean it will continue on that course. I continue to have my blood checked every 3 weeks (ok, a little overkill maybe, but...), looking for any changes which might warrant a change in my present "wait and watch" plan. I definitely don't want to wait till I start feeling sick to begin a treatment plan. At that point the treatment might not be as easy to endure, and may not be as effective. But neither do I want to start treatment too soon, and screw with the good quality of life I have right now.
I also try to eat right, cutting out as much sugar as possible (although lately that has proven to be very difficult), and I continue to exercise very intensely. Anecdotal evidence suggests the benefits of this approach out weight the risks.
Remember, this is my blog. It is what I have chosen, based on my outlook on life. It may not be the best course for others. There really hasn't been substantial research on the subject. My instincts tell me it is the correct plan of actions, and I believe my instincts have served me well over the years. But everyone is different and has different attitudes on life. So everyone really has to make their own decisions.
I still do have my ups and downs, but I try not to dwell on things as much as before. Lots of people get sick. The fact that I got sick, while it certainly wasn't something I planned for, is a fact of life. To think that I or anyone shouldn't, wouldn't or couldn't get sick is really an egotistical attitude. Now I just try to look at life as something to cherish and to enjoy. I think the tagline that I use at the end of emails says it best - "The future is just a concept we use to avoid living today".
But besides dealing with life, I have learned a great many more things that are vital to anyone fighting cancer or any other disease.
The first thing, and the one thing above all, that I learned at my first Lymphoma Research Foundation conference, is - "NOBODY CARES MORE ABOUT YOU THEN YOU DO!". That includes your wife, your parents, your brothers and sisters. If you don't advocate for yourself, no one else will ever do as good a job. If you have cancer, or any disease for that matter, don't ever lose sight of that fact.
The second thing I learned is our commodity driven health care system sucks. But that doesn't mean you can't or won't get the care and treatment you need. You just need to be sure you are a good advocate for yourself, or have someone you can trust be your advocate if you are unable. (Keeping in mind what I said previously - "NOBODY CARES MORE ABOUT YOU THEN YOU DO!" )
Stay totally informed. All doctors are not created equal. There are good and caring doctors, and there are just the opposite. Not all doctors are driven by the profit motive, but if you don't stay informed and advocate forcefully for yourself, you likely won't get the desired care or treatment. Remember, you are not your doctors only patient. He likely has many patients, all needing care. Doctors are not gods. They are only human, and many times can get overwhelmed. Just be sure to stay on top of everything. Read the literature, know what the latest advances are (the internet is a wonderful tool), and ask your doctor about them. If he is not aware of them, and he is good and caring physician, he will appreciate the fact you have kept him informed. And if he isn't, get a new doctor.
As far as my particular lymphoma is concerned, based on at two specific tests I had during my vacations to France and the UK, p27KIP1 and VH Gene mutation, plus some additional routine markers I have concluded that my variants of MCL is on an indolent course. And so it has responded as such for the past 3 years and 8+ months.
That doesn't mean it will continue on that course. I continue to have my blood checked every 3 weeks (ok, a little overkill maybe, but...), looking for any changes which might warrant a change in my present "wait and watch" plan. I definitely don't want to wait till I start feeling sick to begin a treatment plan. At that point the treatment might not be as easy to endure, and may not be as effective. But neither do I want to start treatment too soon, and screw with the good quality of life I have right now.
I also try to eat right, cutting out as much sugar as possible (although lately that has proven to be very difficult), and I continue to exercise very intensely. Anecdotal evidence suggests the benefits of this approach out weight the risks.
Remember, this is my blog. It is what I have chosen, based on my outlook on life. It may not be the best course for others. There really hasn't been substantial research on the subject. My instincts tell me it is the correct plan of actions, and I believe my instincts have served me well over the years. But everyone is different and has different attitudes on life. So everyone really has to make their own decisions.
Comments
Thank you for doing this. It is so very helpful knowing the thought process and procedures others go through in choosing treatment options. I am in the middle of that process right now. My hematologist/oncologist wants to go a more aggressive route, but I, like you, am not sure I want to go down that road right now. Again, thanks and I wish you all the very best and be secure in the knowledge that whatever you have chosen, it is the right choice for you at the place and time you are at.
John
I know how hard it is. If only it were easy to see the future, and know what the correct decision would be before hand.
Best wishes with whatever decision you make.
Marc