Although Leroy Sievers has left us, his NPR blog lives on. If you haven’t already seen today’s (08/27/08) blog entry, it is really worth the trip. http://www.npr.org/blogs/mycancer/. It was written by his oncologist, Dr. Joe Herman. Dr. Herman provided wisdom that all patients (cancer and otherwise) should take to heart… ask questions and understand your options and consequences.
Reading Leroy’s blog today prompted me to write the following paragraph. The standard of treatment is constantly changing. What wasn’t a standard last year may be a standard today. In an ideal world, the most successful treatments would be adopted by all medical professionals immediately. But we don’t live in an ideal world and the time to adoption is not instantaneous. Take the time to research your condition and then come prepared when you meet with your doctor to ask the tough questions, push the envelope, and understand your options. Good doctors will listen to you, provide honest feedback on your queries, and most important, respect your wishes. In Cancer World there are not always clear cut results and directions. It’s no different than many other decisions one has to make; moving forward with imperfect or the lack of full information. Much of what happens in Cancer World is outside of one’s control, but that leaves a portion which is within one’s control. As a patient, it’s your life and you have the obligation to yourself to take the initiative and exercise that which you can control.
My hat is off to Dr. Herman for writing so powerfully today about the role a patient can take in his or her own treatment.
Take care everyone.
Wednesday, August 27, 2008
Tuesday, August 26, 2008
Appointment Scheduling
About a year into my cancer journey I decided to spend as little time and make as few trips as possible to the cancer center. Life already felt shortened. I can’t imagine my tombstone inscribed with the words, “I wish I had spent more time traveling to and being in the cancer center.” Please don’t get me wrong, there are great, dedicated, generous care givers and professionals at the hospital; I’d just rather be some place else.
My next set of appointments is in mid September. I have 6 appointments. Up until yesterday, they were spread over 3 separate trips within a 10 day period. It took some work (many emails and some diligence), but I now have all 6 appointments scheduled on the same day. It will begin with a blood draw, then a trip to dental oncology to assess my mouth device (which is working out great by the way), followed by a visit to the oncology clinic, a post surgery checkup, the supportive care unit, and then chemo. Sounds simple doesn’t it? Some appointments may start late and as a result others may have to be rescheduled, but the plan is to knock them all out in a single day.
The truth is that although I’m not really in charge, some days it feels like I am, and that makes me feel good.
Take care everyone.
My next set of appointments is in mid September. I have 6 appointments. Up until yesterday, they were spread over 3 separate trips within a 10 day period. It took some work (many emails and some diligence), but I now have all 6 appointments scheduled on the same day. It will begin with a blood draw, then a trip to dental oncology to assess my mouth device (which is working out great by the way), followed by a visit to the oncology clinic, a post surgery checkup, the supportive care unit, and then chemo. Sounds simple doesn’t it? Some appointments may start late and as a result others may have to be rescheduled, but the plan is to knock them all out in a single day.
The truth is that although I’m not really in charge, some days it feels like I am, and that makes me feel good.
Take care everyone.
Monday, August 25, 2008
Pain Management
One thing that you learn from cancer is pain, pure and simple. I’m quite sure that my physical pain threshold has increased 2 to 3 times over the past few years. We’re constantly being asked by our medical professionals to rate our pain on a 0 to 10 scale with zero being no pain and 10 being the worst pain imaginable. The pain may be due to the cancer, the treatment, a weakened immune systems, growing older or any combination of these factors. With pain comes the business of pain management.
I had some success with a new medicine this weekend. Last Monday, the Supportive Care group at my hospital prescribed a new medicine to treat severe headaches. These are not “take two to four Advil and go about your business” type headaches. These are “48 – 72 hour stay in a dark room with low light, no noise, and a cold wash cloth on your forehead” type headaches. I’ve tried many different medicines to treat these headaches in the past. Both over the counter and prescription drug opiates. Nothing helped… until yesterday. I took a drug for migraine headaches and 90% of the headache went away. I ended up taking two doses about 6 hours apart. This medicine allowed me to read 200 pages in a great book (Bringing Down the House – the book the recent movie 21 was based on), watch a little TV (the final installment of “Generation Kill” on HBO), play a few games with my daughter, and even have a brief visit with a friend. Compare that to lying in bed with pain and I’d have to call it a success.
I was very hesitant to try this medicine. The possible side effects scare me. Here they are. “CONTACT YOUR DOCTOR IMMEDIATELY if you experience wheezing, tightness in your jaw, neck, or chest; chest pain; heart throbbing; unusual vision changes or loss of vision; severe stomach pain; or bloody diarrhea.”
It’s one thing to sign the consent forms at the hospital before an operation or a new chemo regimen with all the possible side effects including death, but to do it at home with an unknown medicine freaks me out.
The moral of this story is to continue to work with your medical team to make the most of what you have. Maybe you too with be fortunate enough to find a treatment that will make life easier, even if for one day.
Take care everyone.
I had some success with a new medicine this weekend. Last Monday, the Supportive Care group at my hospital prescribed a new medicine to treat severe headaches. These are not “take two to four Advil and go about your business” type headaches. These are “48 – 72 hour stay in a dark room with low light, no noise, and a cold wash cloth on your forehead” type headaches. I’ve tried many different medicines to treat these headaches in the past. Both over the counter and prescription drug opiates. Nothing helped… until yesterday. I took a drug for migraine headaches and 90% of the headache went away. I ended up taking two doses about 6 hours apart. This medicine allowed me to read 200 pages in a great book (Bringing Down the House – the book the recent movie 21 was based on), watch a little TV (the final installment of “Generation Kill” on HBO), play a few games with my daughter, and even have a brief visit with a friend. Compare that to lying in bed with pain and I’d have to call it a success.
I was very hesitant to try this medicine. The possible side effects scare me. Here they are. “CONTACT YOUR DOCTOR IMMEDIATELY if you experience wheezing, tightness in your jaw, neck, or chest; chest pain; heart throbbing; unusual vision changes or loss of vision; severe stomach pain; or bloody diarrhea.”
It’s one thing to sign the consent forms at the hospital before an operation or a new chemo regimen with all the possible side effects including death, but to do it at home with an unknown medicine freaks me out.
The moral of this story is to continue to work with your medical team to make the most of what you have. Maybe you too with be fortunate enough to find a treatment that will make life easier, even if for one day.
Take care everyone.
Monday, August 18, 2008
Leroy Sievers
Another member of the cancer family has left us. Leroy Sievers at age 53 passed away on 8/15/08. Here's a link to his NPR blog site.
http://www.npr.org/blogs/mycancer/
Leroy and the community he created with his blog taught me that life is short and to enjoy each pain free day.
Here are links to Leroy's obituaries in the Washington Post and New York Times:
http://www.washingtonpost.com/wp-dyn/content/article/2008/08/18/AR2008081802190.html
http://www.nytimes.com/2008/08/19/arts/television/19sievers.html?_r=1&oref=slogin
Take care everyone.
http://www.npr.org/blogs/mycancer/
Leroy and the community he created with his blog taught me that life is short and to enjoy each pain free day.
Here are links to Leroy's obituaries in the Washington Post and New York Times:
http://www.washingtonpost.com/wp-dyn/content/article/2008/08/18/AR2008081802190.html
http://www.nytimes.com/2008/08/19/arts/television/19sievers.html?_r=1&oref=slogin
Take care everyone.
Friday, August 8, 2008
Me and My Cancer
I won’t keep you all in suspense with the blog title; I’m feeling good, my cancer had not returned. But, I’ve been having some trouble getting a good night’s sleep lately despite the medications that have worked so well up until now. I seem to wake up at 2:20 AM each morning and then have difficulty falling back to sleep. This morning at 2:20 AM I started thinking of that old song sung by Perry Como, “Me and my Shadow.” It’s a sad song and just like my shadow, the cancer never seems far away. Sometimes it’s there, sometimes it’s not. And, even when it’s not there, I know it will return.
I’ve mentioned this before, but feel it worth repeating. My current status is “no evidence of disease (NED)” and I’ve been in this status since October of 2007. I think they used to call this remission, but now it’s NED. Remission will begin when I’ve been in a NED status for two years straight. At the 5 year mark, they considered you cured. For me, that would truly be remarkable!
Since I’ve been feeling well, I’ve been enjoying myself with visits, friends, family, and even some short trips. In July I took my 2nd plane trip in 19 months; the 1st plane trip was early this year and left me in bed feeling ill for weeks after I got home. This compares to a before cancer state of traveling about twice a month. Not that there is any question (or any choice), I’d take the before cancer state every time.
For those of you that follow Leroy Sievers periodically at the NPR website, http://www.npr.org/blogs/mycancer/, he’s been having a tough time of it. It sounds like he is having trouble moving around the house, getting rest, and is thinking seriously about hospice care. My best wishes go out to him, his family, and support network.
Enjoy yourself. Life is short. Take care everyone.
I’ve mentioned this before, but feel it worth repeating. My current status is “no evidence of disease (NED)” and I’ve been in this status since October of 2007. I think they used to call this remission, but now it’s NED. Remission will begin when I’ve been in a NED status for two years straight. At the 5 year mark, they considered you cured. For me, that would truly be remarkable!
Since I’ve been feeling well, I’ve been enjoying myself with visits, friends, family, and even some short trips. In July I took my 2nd plane trip in 19 months; the 1st plane trip was early this year and left me in bed feeling ill for weeks after I got home. This compares to a before cancer state of traveling about twice a month. Not that there is any question (or any choice), I’d take the before cancer state every time.
For those of you that follow Leroy Sievers periodically at the NPR website, http://www.npr.org/blogs/mycancer/, he’s been having a tough time of it. It sounds like he is having trouble moving around the house, getting rest, and is thinking seriously about hospice care. My best wishes go out to him, his family, and support network.
Enjoy yourself. Life is short. Take care everyone.
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