Mad as Hell
I am steaming MAD! Jumping up and down mad. I have been written off by yet another doctor; consigned to that vast ocean of “incurables.” But let me start from the beginning.
A doctor suffering from Stage IV lung cancer recently wrote on his blog about what he was experiencing with Tarceva: “Two weeks ago I went to see an ear, nose and throat specialist. I wanted to find out if my persistent cough was due in part to sinus inflammation. Further examination revealed that my nasal passages are very dry and raw, and the mucosal lining is nearly completely denuded (sloughed off). This epithelial lining is an important protective barrier against dust, allergens and infectious agents. Tarceva can affect all epithelial lining in the body including the nose, sinuses, gut, and skin.” His description fits what I have been experiencing since I restarted Tarceva three weeks ago. For the most part, I have dealt with the dryness by running a humidifier 24/7, using a saline moisturizing nasal spray and moisturizing eye drops, and drinking lots of water. The dry nose, dry mouth, and sore throat pretty much have gone away, but the cough that coincided with starting the Tarceva seemed to be getting worse. I had already mentioned it to several nurses, but no one could tell me if it was connected to the Tarceva, or if it might be something a little more serious. So I made an appointment to see a pulmonologist. That appointment was today.
The pulmonologist never really diagnosed what the problem was… it could be the tumor - or maybe not – no tests were ordered, not even a chest x-ray. He wanted to know if we had considered radiation to reduce the size of the tumor? (In June, we were told by a radiologist that since I had stage IV cancer, there was no point doing radiation. In fact the radiologist said that I might want to consider just going back to Canada to live out my life.) At least four times during the office visit today, I was reminded that I had advanced lung cancer. “You know, you have late stage lung cancer.” So what does that mean? That if I broke my leg there wouldn’t be any point in setting it because I’m not going to live much longer anyway? I walked out of the office with an inhaler (and a little dog and pony show on how to use it) and an appointment to come back in three to four weeks. If I live that long!!
It is no wonder the survival rate for Stage IV lung cancer is so tragically low. There is a fatalistic attitude in the medical field that is hard for the average cancer patient to overcome. We are constantly being reminded that death is just around the corner for us. There is no encouragement whatsoever. Maybe if advanced cancer patients were treated like they were going to be in that elite group of survivors, the survival rate would go up. I was healthy before I got lung cancer… I am still healthy except for the side effects of chemotherapy. Treat me like any other patient. Treat me like I am going to live another five years, because if ever I needed an incentive to live that long it is to prove to you arrogant bastards that you are not God. You do not have some God-given knowledge that gives you the right to predict how long I will live or to determine my treatment based upon that prediction.
... P. L. Morningstar
A doctor suffering from Stage IV lung cancer recently wrote on his blog about what he was experiencing with Tarceva: “Two weeks ago I went to see an ear, nose and throat specialist. I wanted to find out if my persistent cough was due in part to sinus inflammation. Further examination revealed that my nasal passages are very dry and raw, and the mucosal lining is nearly completely denuded (sloughed off). This epithelial lining is an important protective barrier against dust, allergens and infectious agents. Tarceva can affect all epithelial lining in the body including the nose, sinuses, gut, and skin.” His description fits what I have been experiencing since I restarted Tarceva three weeks ago. For the most part, I have dealt with the dryness by running a humidifier 24/7, using a saline moisturizing nasal spray and moisturizing eye drops, and drinking lots of water. The dry nose, dry mouth, and sore throat pretty much have gone away, but the cough that coincided with starting the Tarceva seemed to be getting worse. I had already mentioned it to several nurses, but no one could tell me if it was connected to the Tarceva, or if it might be something a little more serious. So I made an appointment to see a pulmonologist. That appointment was today.
The pulmonologist never really diagnosed what the problem was… it could be the tumor - or maybe not – no tests were ordered, not even a chest x-ray. He wanted to know if we had considered radiation to reduce the size of the tumor? (In June, we were told by a radiologist that since I had stage IV cancer, there was no point doing radiation. In fact the radiologist said that I might want to consider just going back to Canada to live out my life.) At least four times during the office visit today, I was reminded that I had advanced lung cancer. “You know, you have late stage lung cancer.” So what does that mean? That if I broke my leg there wouldn’t be any point in setting it because I’m not going to live much longer anyway? I walked out of the office with an inhaler (and a little dog and pony show on how to use it) and an appointment to come back in three to four weeks. If I live that long!!
It is no wonder the survival rate for Stage IV lung cancer is so tragically low. There is a fatalistic attitude in the medical field that is hard for the average cancer patient to overcome. We are constantly being reminded that death is just around the corner for us. There is no encouragement whatsoever. Maybe if advanced cancer patients were treated like they were going to be in that elite group of survivors, the survival rate would go up. I was healthy before I got lung cancer… I am still healthy except for the side effects of chemotherapy. Treat me like any other patient. Treat me like I am going to live another five years, because if ever I needed an incentive to live that long it is to prove to you arrogant bastards that you are not God. You do not have some God-given knowledge that gives you the right to predict how long I will live or to determine my treatment based upon that prediction.
... P. L. Morningstar
posted by Looking for Hope | 7:15 PM
3 Comments:
Have you talked with Dr. Martins at the Seattle Cancer Care Alliance? My friend with stage IV says he's wonderful and compassionate, and while he's a realist, he's always tried to do right by her with treatment, side effect issues, etc.
Having dealth with a lot of crappy oncologists/staff when my brother was being treated for a brain tumor, I'm now a firm believer in specialists when it comes to cancer. Dr. Martins is supposed to be one of the best in the lung cancer field.
PL,
I've been reading everyday since I came across your blog about living in the B.C. wilderness over a year ago. I used Google Earth to ride the ATV on the trail to the steel bridge and walked with you into town to pick up mail and supplies. At the wheel of the Chiron, I have taken her downwind to gain speed and swung her back into the wind, luffing the sails, as we lose momentum drifting up to the mooring buoy that you snag expertly as we stall and smoothly make fast to Chiron's bow. I have been on the Boston Whaler running against the current away from Rendezvous Island as evening approached,the salt air expanding the cells in my brain. I could smell gin on the breath of the bluenose yachting snob, his belly protruding through his shrunken salmon colored Izod pullover... Yeah, I must say your writing prowess took me along on your journeys. Your diagnosis was a stunner. Talk about out of the blue. My mom lived with cancer for 15 years and finally, at age 80, she passed on among the blazing foliage of New England autumn in October 2004. My youngest daughter attended and graduated from Western Washington a couple years ago and I have been to all of the places you write so eloquently about in Bellingham. I can smell the morning coffee downtown, enjoyed many sunsets in Fairhaven and crunched Washington apples at the Farmer's Market. I feel I have come to know both you and your husband and have really enjoyed the sailing and homesteading adventures. You have already accomplished most of my own lifelong dreams that are still only dreams. I felt intense sadness when you both were forced to sell the beautiful cabin and leave what I imagined(through your words)what was my own sacred place in the wild. The U-Haul backed up to the cabin is etched in my mind. Your post the other day about how people visit less and call more infrequently are things I have experienced with my mom. Over the years of her struggle I made more than a dozen trips from the West Coast back to my native Boston when the cancer had spread, she had a "downturn" or she was just depressed and worn out from the fight. I saw how she was affected when old friends and even close relatives seemed to lose interest and move on with their lives. Although it may not feel like it to you, you have affected many, many lives through your writing and photography(you have a polished eye for natural beauty). I then read of your lifelong efforts in the natural world, the environment and deep ecology around the world that make me feel wonderfully envious of your lust for life and making the things you wanted to do in your life happen. Bravo! A kindred spirit from an earlier time at Walden Pond in Concord,MA once said,"I went to the woods because I wished to live deliberately, to front only the essential facts of life, and see if I could not learn what it had to teach, and not, when I came to die, discover that I had not lived." It is my humble estimation that you have both have faced the essential facts of life together and are LIVING lives many only dream of. If, on my last day on earth, I recall the phases of my life and remember but a fraction of the joy you both have experienced, I will discover that I have, in fact, lived deeply and sucked the marrow of life and be a happy, fulfilled man. Is there more that one can ask for?
Thank you for everything, especially your courage to let all of us into your incredible lives' journey and your grace in allowing us to share in it.
Kevin in Gig Harbor,WA...
Kevin –
We are overwhelmed by your comments. And pleased beyond measure to have your active participation in our adventures past and present. One of our favorite quotations is something Mark Twain once said:
"Twenty years from now you will be more disappointed by the things that you didn't do than by the ones you did do. So throw off the bowlines. Sail away from the safe harbor. Catch the trade winds in your sails. Explore. Dream. Discover."
Life is a great, unfathomable journey. Thanks for sharing the ride.
Morningstar and Bob
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