No Tubes, No Video, and No Answer at 206 FOR HOPE
Yesterday, the last of the tubes hanging from my body were removed. It marks almost two weeks with something external hanging from my body. Good to see that record end.
It wasn’t easy, though, like so much of this journey. The suture from one of the pigtail catheters knotted up inside my chest and wouldn’t budge. It took about five specialists and a trip to internal radiology for them to finally remove it. It would have been somewhat comical if it didn’t hurt so damn much. I did feel macho the way the doctor complimented me on my pain threshold (even as I sucked on some fentanyl). Inside I was crying, though. Sometimes the big things like the amputation or enzymes flushes into my lungs don’t get to me as much as something minor that should go a lot smoother.
With them tugging on my chest like a car engine that won’t give, I got philosophical. Why? I got personal. Can’t something go right? I got sad. It’s all about three little kids that haven’t had their dad home in a week and just need some one-on-one time. I got nostalgic for my parents (my lifelong neighbor — remember I live in the house I grew up in — took me that day and he reminds me of my dad). I wish I had them here. Who else knows the pain of a child better than a parent? I got pathetic. Please, just please stop all this, make it go away. Finally it was over, and I went home for a long, desparate nap.
Many noticed that, yes, I did remove the video. Why? You can’t bite too much off the hand that feeds you. I’m just trying to make it more shapely, a better hand. I did ask the Dr. making the request if the resident learned his lesson. The response was a resounding yes. So the message did get through. I’m sure some guy starting his career doesn’t want this to be his legacy. And I believe everyone deserves a second chance to make it better. I do hope he knows now every interaction with a patient is a chance for him to elevate his humanity.
Finally, as we’re at this turning point and trying to find what’s next, I thought I’d give Seattle Treatment & Wellness Center a try. They bill themselves as the place to turn when conventional treatment fails. But I didn’t see it as some hocus-pocus alternative either. Good people have told me about them and I know from reading their literature that they combine traditional chemos with naturopathic remedies. So I called and left a message detailing my disease, where I’m at, and that I’m turning to them because I’m low on options. They phoned back pretty quickly and basically said, ‘we can’t help you.’ Epithelioid sarcoma is so rare that they’d send me back to SCCA. Oh well. Kim laughed when I told her I got no hope from 206 FOR HOPE. It was worth a laugh at least.
Joshua, I don\’t remember how I happened on to your blog but I have been a regular reader for a couple of months. This is my first comment. I am commenting because I want you to know how inspiring you are to be. Late this year I will turn 50 and so far I have my health and a good family. I too have two kids. Most would say I have a good life. But is the way of most, I at times feel sorry for myself, I let the stress of the day, the week, the month get to me. I can not imagine what you are going through. What your family is going through. But your strength in the face of your challenges is truly inspirational. I get a knot in my throat as I read your posts. It puts things in immediate perspective… i really do not have any business feeling the way I do at times. The other day I as I was getting heated up over something my 6 year did…. I actually said to myself — in the density of "my old dog" brain…"what would Joshua do?"… amazing isn\’t. We have never met but you have had a profound impact on me. BTW… Mike and I worked it out with out all the usual yelling and crying. We both learned. You can teach an old dog new tricks.For what its worth I do believe in miracles… and you are one! sincerley, Peter Bateman Alexandria, VA
Peter
February 13, 2009 at 9:59 am
Chiam, good job on removing the video. You\’re right; the video served your intended purpose. You don\’t need to vilify the resident; he\’s a different resident today. His boss saw the video; if the doctor didn\’t change the resident\’s attitude, perhaps he can\’t be changed. You know how Neil Young says his songs represents moments in time, a slice of history. That\’s what your video recorded and you changed one person. No one has the energy to change them all. Sorry re: Seattle Treatment & Wellness Center. Who said this was going to be easy. Stay strong.
tom
February 13, 2009 at 12:46 pm
Hi JoshGlad to see you haven\’t totally lost your sense of humour. I cracked up when I read you got no hope from 206 FOR HELP. Probably not a laughing matter, but if you can\’t laugh at life sometimes then things can get pretty depressing. I take lots of supplements and truly believe they have helped with my ES. Dont give up yet. I definitely recommend you find a naturopath who is willing to help. Re: video clip – good to see you can rise above this incident and give him a second chance. Besides, guys like him aren\’t worth the wasted energy on your behalf!Keep your spirit aliveKarlene
Karlene
February 13, 2009 at 5:57 pm
Josh,I didn\’t see the video, but I didn\’t need to. Unfortunately I know all to well what happened. I wonder if Russ had the pleasure of having this same doc? I\’m glad that it seems this guy has learned his lesson and maybe it will mean one less frustrating encounter for a future patient and their family. I agree with Karlene, I\’m glad you haven\’t lost your sense of humor. I too got a real good laugh out of 206 FOR HOPE. Keep fighting!
Claire
February 14, 2009 at 1:12 am
I like my naturopath, Dr. Bufi at Swedish/NW Natural Health Specialty Care Clinic (Ballard). I\’ve asked him to keep me healthy while going through each kind of treatment. He\’s listened well (always a plus) and I believe the vitamins and supplements can\’t hurt. He and his colleagues specialize in treating cancer with naturopathic means. For what it\’s worth….Jill
Jill
February 14, 2009 at 9:28 am
You got emotional, Josh. We can count – philosophical ; personal ; sad ; nostalgic ; pathetic. Names indicating feelings – appropriate feelings, matching the circumstances. And then you laughed. I know of a man who also had emotions similar to these ; he could never have expected them in the crushing cold and crushing labour of a Siberian gulag ; but he did. He came home. Keep those emotions coming!There\’s a saying, "To become the person you want to be, you must first pretend to be that person". Many people have asked themselves, "What kind of person do I want to be … tomorrow?" A hopeful person? Start acting the part today. What kinds of thoughts does a hopeful person have? What does he say? What prayers? What does he do? Play it for an Oscar – pretend that you\’ll be famous and rich if you make a good job of it. Practice it every day ; every moment of every day. Never mind if you don\’t feel particularly hopeful ; you\’re only acting, right? the real stuff will come in its own good time, as every actor knows.Sure, you\’ll carry on with the treatments ; and you\’ll not forget that it is a person who\’s being treated, not a patient. But I don\’t need to tell you that ; every word your write here shows it. But there are things you can do to keep it always at the front of your mind.It\’s a privilege to take liberties with posts like this! But there you are – I was ever a chancer.Good Luck!
Jamie
February 14, 2009 at 2:37 pm
As an aside – it\’s nice to know that you helped that young doctor on his way. He\’ll always remember you for that.
Jamie
February 14, 2009 at 2:40 pm