We are a brother and sister. Our father was diagnosed with kidney cancer ten years ago. He has had over a dozen major surgeries, been on countless biological and chemotherapy drugs, and fought every step of the way. He has never been an “easy” guy to deal with, but was a loving father in his own way. As he reaches the end of his life (his remaining kidney has failed and there are no clear short or long solutions out there), he is denying his current situation and lashing out at the people around him. This is a blog about our experiences with dad and how we are coping with the situation as he approaches the end of his life. We love dad and want what he has said he always wanted: quality time with the family. However we are at a loss for how to do that given his rage and anger towards us. We hope others that have gone through this situation before and people going through it now will find some solace in our stories and comment on how we can better deal with dad.
Archives
- July 2010 (1)
- April 2010 (2)
- February 2010 (1)
- January 2010 (8)
- December 2009 (6)
12 comments
Comments feed for this article
December 30, 2009 at 11:27 pm
Ingrid
Dear Asshole and Piece of Shit,
I have to say, I love those names. Probably because my name is Ingrid and I’m currently being called my first given name. Who knows, maybe in the future it will change. 10 years of cancer has to be extremely hard. And it must be tough not to get bitter seeing that you were supposed to die in 6 months, then 2 years pass, then 5, 6, 7, and so on. You’re expecting to die any minute. My suggestion is to agree with him every single time no matter what he says but do it sincerely. In time he’ll realise he’s only arguing with himself. And when he calls you those lovely names – don’t respond one word. It was hard for me to give you this advice because if you do this then there may not be much of a blog. LOL
I’ve seen my aunt die of cancer so I know this is a hard time for both of you. There may be a time when he doesn’t recognize you by these names or by any other. I hear this is when they’re actually at peace and feel no pain through all the medications. My father died of Parkinsons so although he possibly could’ve been thinking the same things your father was he wasn’t able to express them. Not sure which is worse as a daughter. Your writing is very humorous and I can see a book coming out of this. Please keep writing. Fantastic!
I wish the 3 of you lots of peace.
Warmest regards,
Ingrid
January 1, 2010 at 8:34 pm
dealingwithdad
Ingrid, thanks for the comment. I hear you on agreeing with him but there have honestly been times when if we agreed with him, he would have died. He went toxic over Thanksgiving when his kidney’s failed (that post coming soon) and if my sister did not manipulate him into seeing his nephrologist for a “check up”, he would have died within a couple hours. But in his mind, the hospital is trying to kill him, not keeping his body from failing any faster than it already is. Grand daddy post coming on that soon! Thanks again for your comment, can’t wait to hear more from you! Bro
January 21, 2010 at 10:46 pm
Andy
I’m going to read your blog because I find it fascinating: your reaction. I am not in your shoes…it’s one of my biggest b*tches when people tell me what I should do…how I should act. I’m not in your shoes so I can’t fully understand. The only thing I think I understand is what people who are dying feel…especially when they can see it coming. My wife and I discussed it more than she wanted to. She never thought she wouldn’t live. Your father may feel the same way. Screw the stats…all that.
Angry or not he wants to live and he might have regrets…maybe for the past…probably for what he’ll miss. That would make me angry too. Add the physical problems…feeling like crap…people telling you that you’re nearing the end and how hard it is on them to have it be so…I don’t know…I wonder what I’d be like.
I’m sorry if this is coming off as jerk-ish…it’s not my intention. I guess I just want to share my gut reaction to the “About” section here. BTW…I KNOW this is hard on you. I do. As I said…I’m not living in your shoes…so I want to be careful. I’m only going off what I just read.
Wow…this has become a post in itself. Sorry about that. (My experience with blogs is we…bloggers…aren’t so cool with dissenting views. I’m not. But sometimes when I’m done being pissed off I realize something that I believe may not be as grounded as I thought. I hate that and like it at the same time.)
Thanks for your honesty on this blog. You are a great writer. I hope you don’t mind…but I’m going to visit often to see how things are going.
January 21, 2010 at 11:33 pm
dealingwithdad
Andy, totally appreciate your comments. As weird as it seems, I totally agree with you. What I want to make clear is that Sis and I have no idea what it is like to have cancer, live with it for 10 years and to stare death in the face every day. I know dad hates having people worry about him and his health because it reminds him that he is human and that he is not fully in control of his health and life. There is a lot of pettiness in my feelings, there is a lot of anger, their is a lot of “stop being an asshole and let me help” … but my feelings are still real and that is what I are working through right now. Honestly, at the moment I am at the “fuck you, if you want it like that you can do it alone” stage, and I am not so sure that is not what dad wants, and that is his choice. I had an amazing talk with a friend the other day who went through the death of a parent and they said they had to let themselves be angry before they could forgive… maybe that is what is happening. There are so many other ways this could go down, there are so many other ways I wanted this to go down… why was I stupid enough to think that we would have a “come to Jesus” moment when all the history just pealed away and we understood and appreciated each other… naive bullshit. Now, rather than riding off happily into the sunset, the guns are blazing and no one is going to be left standing at the end. So for now, I am staying out of Dodge. Thanks again Andy, hope you keep following, keep commenting and spread the word for us. Bro
January 22, 2010 at 11:51 am
Andy
And that is completely understandable. It’s not like the movies is it? We’re sold a bill of goods on that front. I will spread the word. Keep writing. Honesty comes through in posts like this…and that’s a good thing in this “I got rich and so can you!” world.
Take care…my best and all that.
January 23, 2010 at 12:20 pm
Floy Dean
You are speaking from your heart – honesty is always difficult for anyone to swallow. People sometimes lived behind those rose-colored glasses and turn their heads from the truth.
I’ve read some of the comments from readers and found them cruel and callous.
Loved reading your article. My dad died of a rare lung cancer. He was not the difficult one, my mother was. I watched my dad, a huge man, ex-boxer, ex-marine, blue collar worker, boat racer, mechanic and as dysfunctional as any human could be, wage war with cancer. I’ve developed a motto, “pick and choose your battles” and live true to that. My dad died in 1991.
It’s a very sad journey and I will pray for you because you need it.
Your dad, well, I’ll just leave it alone. Everyone is different, everyone marches to the beat of his own drummer. There’s no psychological profile on how different people deal with life.
Continue living your life that works for you and you alone. Life is fast so slow day. Have a great day.
January 24, 2010 at 12:13 am
dealingwithdad
Flory Dean, thank you for reading and your comments. I have appreciated everyone’s comments, everyone comes from a different place based on their relationship with their fathers. I have noticed that people with positive, strong relationships have a very hard time understanding how I feel about dad, like there is some expected, unquestioning love I am obligated to feel no matter what. Yes, dad provided for me in some ways… provided me food and a roof over my head two days every other week and did pay for college. And he taught me all these lessons I am writing about now – objectify women, its money that matters and countless others. The reality is that dad has left a long legacy of stress, frustration and pain with a few positive moments that shine so bright because they were so exceptional. Dad would say, “I took you Aspen, I bought you a car.” I would respond with, “you never sat down and listened. We never cared to understand what made me tick. You held all those trips and gifts over my head when you needed to guilt me into doing what you wanted.” Was most of that in my head, sure. But it is still my reality and since you never cared to talk and get to know me, it was the only reality possible. Thanks Flory Dean, hope you continue to read and spread the word. Bro
January 24, 2010 at 8:30 pm
doctorblue
Re: Post on useless cancer research. Why is so much money and time spent researching cures for cancer when there is a great need for new and less toxic antibiotics, antifungals and antivirals? I’m sure your question is rhetorical because it is nearly always about profit nowadays. Companies have to manufacture products that cause cancer so they are cheaper and sell at a profit. Then other companies have to develop the antidote so they can profit too! It’s the American way, babe.
I applaud your posts and your writing style. My mom died of renal cell carcinoma in 1997 and it was like I was in a horror science fiction movie. When I turned 50, six years ago, I was exhibiting her exact same symptoms. Even knowing my family history, the many doctors I saw didn’t think I looked sick enough, so they played the “it’s all in your head” card — dismissing all positive test results for multiple infections as organisms everyone has in his normal flora, so no need to treat. So the infections spread to my spine and I became disabled with severe degeneration of my spine. In the interim I developed all kinds of other health problems from peripheral vascular disease and an autoimmune reaction to ulcerative colitis and osteomyelitis. It took me six years to find doctors with the knowledge and will to help me. They confirmed my self-diagnosis. I just began getting treatments a few months ago. (My quest for competent medical care and experiences with doctors are chronicled on my blog http://doctorblue.wordpress.com.)
The reason I mention this is to try to relate what happens to someone who is chronically ill. I found that my illness stemmed from unresolved congenital problems. That means that inflammation was accumulating in my system for decades as it tried to deal with multiple low lying infections. When the immune system is strong, it can quarantine in the visceral fat those toxins that the body doesn’t excrete. But once the immune system is weakened by illness, all those quarantined toxins are released back into the system causing a self-intoxication and an inflammatory cascade. The body’s self defense mechanism then begins to work against you — attacking the adrenals and other glands one needs to be able to handle stress of any sort. I lost my ability to control my emotions because my arteries and veins were clogged with plaque from all the inflammation and infection pus… This condition cut off my ability to get any nutrients into my tissues through the capillaries or excrete waste products. I was terribly malnourished in spite of taking massive amounts of vitamin and mineral supplements, cleanses, etc.
I would cry or lose my temper at the drop of a hat for reasons that were beyond even me. I knew this behavior was crazy but I had no physiological ability to control it. This all changed after I was lucky enough to find a doctor who offered chelation therapy with heparin. It helps to remove plaque from the blood vessels and improve circulation. I had 30 treatments. I only started noticing a difference at about the 15th treatment. I’m not telling you this to give you a biology lesson, or recommend any therapy. I’m just a patient myself. But had I known about the consequences of prolonged inflammation when my mom was sick, it might have explained some of the seemingly irrational behavior. Psychiatry and anti-depressants don’t improve one’s mental state when the cause is physiological — the repercussions of impaired circulation.
By no means is chelation a panacea as it did little to eradicate my multiple bacterial, fungal and viral infections. I’m working on that and other issues now with the help of the competent doctors I eventually found. Other than their help, however, I am dealing with this chronic illness on my own. I found it’s difficult for most who haven’t experienced chronic illness first hand to empathize with the patient. While I know people have good intentions, it doesn’t help to tell the sick person to get over what’s bothering them as if this was some conscious decision the patient has control over. I found many people side with doctors who fail to diagnose physical signs of illness, so they assume you are crazy or on drugs. Many people still believe in a deist medical care system in which contradicting the doctor would be sacriligious. These people caused me more stress than I could bear with everything else I was dealing with already, so I made a conscious decision to avoid them.
I have no idea if any of this relates to what is going on with your dad. It’s what happened to me, that’s all. To me, it would seem a patient would be angry with any doctors who failed to diagnose and treat them properly — for awhile at least. All might be forgiven if the doctor eventually did make an accurate, though delayed, diagnosis. I wasn’t that fortunate. It’s as if none of the doctors I saw actually read test results before filing reports or that they just didn’t know what the results signified.
January 24, 2010 at 11:20 pm
dealingwithdad
Wow, doctorblue, thank you. When I read, “I would cry or lose my temper at the drop of a hat for reasons that were beyond even me. I knew this behavior was crazy but I had no physiological ability to control it,” I immediately thought of dad. But honestly, I feel even more hopeless because Sis and I have no way of even suggesting he try something like chelation therapy with heparin because he absolutely refuses to discuss his health with us (but still expects everyone to drop everything immediately if he falls into a crisis – one that often could have been avoided with better attention to his medical condition). Thanks for your comment and I hope you continue us and spread the word. Best, Bro.
January 25, 2010 at 7:52 pm
doctorblue
The first thought I had after reading your response was how about asking the doctor whom your dad trusts about chelation or treatment with heparin, and then he could broach the subject with your dad. But most conventional MDs frown on chelation because some “alternative” doctors didn’t quite know what they were doing and had some bad reactions from patients which were highly publicized. There are different type of chelators to use based on the patient’s bloodwork results re: heavy metals present, plaque, etc. Also the amounts used should be based on the person’s weight and health condition. If your dad has a lot of kidney or liver problems, he may not be a candidate because his system couldn’t tolerate it. It still might be helpful (for your sanity’s sake) to talk to his doctor on the QT about testing his serum levels for inflammatory factors. The important tests are high sensitivity C-Reactive Protein, homocystine, fibrinogen, PLAC (measures how much inflammation is moving through his arteries). If the results are on the high side of what is considered within the “normal” range, a follow up conversation about heparin therapy may be in order. Unfortunately, another stumbling block I encountered dealing with conventional doctors is in their ability to interpret test results. One of the blog posts I have yet to write is about lab test results. The typical standards of what are termed within the “normal” range are basically the range of results taken from those who have blood tests run by their doctors. Many if not most of these people have health problems — that’s why people go to the doctor. “Normal” really means the range of what everyone else has and has nothing to do with what the levels of a healthy individual would be. When you consider all the Big Mac and fries, soda, processed packaged food Americans typically consume, this is not a pretty picture. For instance, in 2005 my fibrinogen level was 425 — right at the crux of being abnormally high based on the accepted very wide range. A healthy person’s fibrinogen level is no higher than 300. So, in 2005, my doctor told me I was fine when I was so puffed up from inflammation in my system, I felt like I was about to explode. Not to discourage you, but unless the doctor you are dealing with is aware of this huge discrepancy between truly acceptable test values and what society accepts as the norm because it doesn’t know better, you’re probably better off not even bringing up the topic. I think I just talked myself out of my own suggestion. That’s coming from my experience. It wasn’t until 2009 that I decided to change the way I was approaching finding competent care to first knowing what I needed to know (such as the values that constitute healthy individuals) and then researching and seeking out doctors who followed this same paradigm. It’s a full time job. So time consuming, in fact, I haven’t written any posts about my patient-doctor experiences after 2008. Those encounters were all pretty much disastrous. The good doctor experiences started in 2009, and I plan to include those posts after I have my surgery in February at the Cleveland Clinic and recuperated some.
January 25, 2010 at 8:33 pm
dealingwithdad
Awesome comment, thank you. Couple things. Cleveland Clinic is dad’s El Dorado (see El Dorado… aka Cleveland Clinic). When a doctor tells him what he doesn’t want to hear, he says, “you don’t know what you’re talking about. I am going to Cleveland Clinic, they know what they are doing.” and then proceeds to give a 20 minute lecture on the medical-industrial complex and how it is killing him, of course ignoring the fact that his beloved hyper-capitalist system with low taxes is what allowed our amazingly effecient, profit making health system to flourish. Second, Sis and I tried calling dad’s trusty medical side kick last week. I left him a message telling him that dad threw out the referal to a psychiatrist he had given him. I also suggested that he talk to dad in private about getting help regarding his depression because dad would never talk to anyone about it if Sis, I or any frend or family member was present. I asked for a call back and added, “if dad told you not to talk to Sis and I, just give me a call and tell me that so I know and won’t call again.” He called dad who then called me, don’t ever talk to my doctors again! If you do, I will disinherit you. It’s a lot of money.” Haven’t spoken to dad since and he can keep the money (if he actually had any). So helping dad by talking to doctors isn’t an option. Although, the other doctors that follow the rule, “do no harm,” are actually working the system appropriately so dad gets what he needs and keep Sis and I informed so dad gets the care he needs, despite his best efforts otherwise. I have started to think he just wants it to end. And that is fine. Throw in the towel, call in hospice and tap the morphine. Awesome. But no. As the Cleveland Clinic doctor told us, “we can’t do anything. If we put him on the table, he won’t get off of it. Your dad is going to deny this till the end.” Oh joy. Thanks so much for the comment and the information. Helps more than you will ever know. Bro
January 26, 2010 at 7:03 pm
doctorblue
Bro, I empathize. When my mom was diagnosed with cancer in 1997, I had her stay with me near Washington DC because I wanted doctors at the Lombardi Cancer Center in Georgetown to give her a second opinion just to make sure — also to see if they knew something doctors in Rochester NY didn’t know. She was in a lot of pain. Vicodin no longer helped her. She couldn’t sit down, which made her flight and any car rides challenging. I didn’t know anything about health care then and just trusted the doctors. Very bad mistake, but that’s a whole different story. Anyway, what I wanted to convey is that when I tried to talk with her and help with finding competent medical care, she wouldn’t share information; she said I didn’t know anything and “you don’t understand.” Having experienced some excruciatingly painful symptoms these last five years, I can now understand that it was too painful mentally for her to talk about her condition. As you may have gathered from my previous short dissertation, it’s difficult to try to explain medical stuff to someone who is just beginning to play the game. When you are the sick patient with limited capacity and brain fog, loss of concentration ..with hardly any understanding of what the doctor is even willing to tell you, it is beyond the patient’s threshold to attempt to convey anything. It’s too overwhelming. Doctors, for the most part, don’t even like to tell healthy patients what’s going on because even they don’t want to explain. I found this often stems from their lack of knowledge unfortunately. Specialists view patient’s with blinders on and detest being asked a question outside of the specialty or organ of concentration. They typically don’t know the answer, and this makes them look stupid.
I went to the Cleveland Clinic for the first time just before Thanksgiving. I was blown away. The facility is non-profit for starters. It’s motto is patients before profits, and even as a Medicare patient, I was treated with more respect, courtesy and competency than I’d ever experienced. And I’ve been in several hospitals during my lifetime and have visited many many doctors. My appointment lasted from 11 am to 4 pm the first day — lengthy interviews with one surgeon and her staff, had to take numerous surveys about my health status and did some testing. They asked if I could stay overnight, do a colon cleanse and come back the next day for another radiograph test. Two surgeons will be operating on me. One is among only a handful of surgeons in the country who can do a colon resection laparoscopically (through a small incision at the belly button). The other surgeon, a pelvic floor specialist, was able to discern the abnormality in my colon that eluded the colon surgeon who just did my colonoscopy last fall and two other gastroenterologists who had CT scans and abdominal ultrasounds to view. All the other doctors I saw throughout my lifetime dismissed my gastrointestinal complaints as nothing to be concerned about. Yeah, I’d say there was a big difference between Cleveland Clinic and every place else too — and that includes Mayo Clinic and Johns Hopkins! Not only from personal dealings but from patient stories of poor outcomes and what they felt was wasted time and money.
To sum up, what you’re experiencing is the lack of teamwork and the lack of a care coordinator endemic in our health care system. Doctors work in silos and are islands onto themselves. They don’t like to talk to each other because each seems to have a different opinion about how the body works. Non-surgeons typically dislike surgeons and vice versa. They’re a fairly miserable bunch and it shows in the lack of care they provide customers, the patients. They can’t give the patient a straight story because they can’t work together to find out what it is. But if the patient appears to “not get it” whatever that is, somehow the patient is made to be at fault. It may well be that your dad can’t tell you what the doctors told him because they either didn’t tell him anything meaningful or anything that he could repeat or make sense of himself. We all need to save face.
Lastly, I want to tell you that I’ve been very depressed myself these past years, because no one would validate that there was something physiologically wrong with me. I kept telling people who would try to get me to seek depression counseling, that their efforts would be better spent looking for a doctor with the knowledge and will to help me get better. I told them once I got a doctor to address my physiological problems, the mental attitude would change dramatically in short order. It did. I am not nearly as angry or depressed as I was now that I have found validation of my health problems by doctors who care and are treating me. Finding this help was a monumental task. Physical illness nearly always affects the brain. The blood brain barrier isn’t very thick when the patient becomes immunocompromised. There’s nothing there to stop the toxins running through one’s bloodstream from entering the brain as well. I know it’s hard for you. There doesn’t seem to be any good answers. I guess I was just stubborn enough to want to prove everyone wrong — that I wasn’t nuts, so I put everything I had to finding the needle in the haystack doctors I needed to help me. It cost me every penny I had — all of my savings, retirement, assets….because I realized you can’t buy your health and without health, all the money in the world is meaningless.
Your blog shows that you are on the right road — seeking answers to a complex problem. I wish you much luck. Doctorblue