If you desire healing,
let yourself fall ill
let yourself fall ill.”
― Rumi
Yesterday I saw a patient—an 80 year old woman with metastatic cancer involving her bones. She had near complete replacement of her twelfth thoracic vertebra by tumor, and also significant destruction of her fourth and fifth lumbar vertebrae, demonstrated by PET-CT scan and bone scan. She had so much pain in her legs that it was difficult to walk. In attempting to discertain whether her pain was coming from her thoracic or her lumbar spine, I asked her a series of questions. The only answers I got were that she had slipped while getting into the bathtub a few weeks ago and that her pain was in her left ankle and her right thigh, both of which had been X-rayed and were normal. Questioning her about her bowel and bladder function was also unrevealing—sure, she had problems with both, but that was because of the radiation she received in 2009. It would seem as though her cancer was causing her no pain at all, yet that was why her medical oncologist had asked for a stat referral. After 30 minutes of discussing her bathtub mishap, her daughter had had enough. She nudged her mother and said, “Mom, you KNOW that is not why we are here.”
My eighty seven year old father has been similarly reluctant to attribute his recent symptoms to his failing aortic valve. Despite being told last summer that he had aortic stenosis, he asserted to his cardiologist that he had no chest pain, only a little shortness of breath with exertion. He was able to walk downhill the eight tenths of a mile to his tennis club, but walking back up had become more difficult. In December, he was still playing doubles tennis despite the fact that he had squeezing chest pressure which occurred with exercise, and was relieved by rest. His cardiologist believed him—that his symptoms were pulmonary rather than cardiac. The pulmonary doctor from Denver was summoned, and the lung consultation was exhaustive. The conclusion was that my father had nothing wrong with his lungs. My father, who by the way is a physician himself, could not admit that his symptoms were classic angina pectoris, and were worsening to the point where he was having them with minimal exertion. For the last two months he has insisted to every doctor who has interviewed him, “I have no chest PAIN, only a little squeezing pressure when I exercise.” The result has been undiagnosed congestive heart failure which would have killed him, if he had not contracted an upper respiratory infection which landed him in the hospital and led to the real diagnosis.
I admire the stoics, the non-complainers. I am not one of them. When I have an ache or a pain, the entire world knows about it. But there should be a limit to stoicism and that limit should be where the patient who is in denial is doing himself harm. On Monday, my patient will undergo a CT simulation for radiation treatment of her thoracic and lumbar vertebrae before she suffers from a spinal cord compression and paralysis from her cancer. On Tuesday my father will have his aortic valve replaced. May they both emerge from their ordeals physically and mentally intact. And may their doctors, including myself, learn to diagnose and treat these patients before they do themselves irreversible damage.
Yes, stoicism is a very difficult condition to overcome. The animals I work with range from the screamers (you just might hurt me, so I’ll scream 1st then decide if it really hurt) to the ones where you may only see a small change in their pupils or a tiny change in their breathing pattern. And, of course the adrenaline of the visit masks so much. I’d actually rather work with the screamers than the stoics. Energy for both your dad and your patient. Energy to you also, as you wait out your dad’s surgery.
My little Jack was a screamer. All you had to do was show him the nail clippers! You didn’t actually have to use them to get him screaming. The deerhounds are the picture of stoicism. Perhaps it’s a pack/hunting dog thing–you don’t want your pack to turn on you if you’re down. And toy dogs are bred to be your “babies”. M
My 88yo grandmother did the same thing… refused to believe she had had a heart attack and only went to the ER when she couldn’t breathe due to fluid in her lungs from heart failure! Said she didn’t have “much” chest pain. Thankfully she is now 5 days out from her bypass surgery, and is getting stronger every day. Will keep a good thought and prayer for you and your dad on Tuesday.
Glad to hear that she is doing well. It gives me encouragement for my Dad. M
When my sister was undergoing chemo I gave her a refrigerator magnet that said “Denial is a God-given survival tool.” It was a joke….but not a joke.
I have kept the magnet to remind me of her. Denial was how she chose to deal with her cancer. And who is to say that she was wrong? Sometimes admitting to weakness or failure or the possibility of death is too soul-crushing for that person to endure, even though admitting it and getting help might extend their life.
Those of us who are realists may be infuriated by such an approach (I know I was) BUT we are not in their shoes.
I don’t have the perfect answer. Sometime I think we should just leave them be.
You are absolutely right about that last sentence. I think that if my Dad had not gotten that pneumonia, he would have gone on his surgery mission to Ethiopia and “died with his boots on”. You probably don’t watch Grey’s Anatomy, but there was an episode where an old surgeon at Mayo Clinic did just that. The risk of critical aortic stenosis is sudden death, with a 50% one year mortality. At this point we’re hoping that a new valve gives him 10 more years! M
I certainly hope that your father comes through this intact and lives long enough to make the upfront suffering worthwhile. But I have to wonder whether those of you who are criticizing near-nonagenarians for their “denial” are not yourselves in some denial. It is statistically unlikely that your father, however fit he may be, will live to 97; few men do. The older you get, and the closer an inevitable death from some cause looms on the horizon, the more rational it is not to pursue aggressive treatment for every proximate cause that presents itself. Meanwhile, the older you get, the more likely you are to be permanently harmed by aggressive treatment, so that instead of simply slipping away after a good long life, you end up demented or frail enough to land in a nursing home. Perhaps some of these oldest-old are not so much in denial as willing to let nature take its course, until their children and grandchildren badger them into doing otherwise?
Jane, thanks for writing. My father did amazingly well. He was off the ventilator the same evening, has now been discharged from the hospital and will spend a short period of time in a skilled nursing facility getting physical therapy before coming back home to live with me until he can be fully independent again. I completely agree with you regarding near nonagenarians, generally speaking. So did his cardiac surgeon–he used the probability of living 10 years post op as a guideline, and my dad was COMPLETELY worked up preop. But my father is a “different breed”. In September he traveled with Surgicorps to Zambia to operate on childhood burn victims. In October he traveled with the same group to Viet Nam to do cleft lips and cleft palates. In December he traveled to the Galapagos with us, and was climbing on and off Zodiacs and kayaks as well as I did. His deterioration to being unable to ambulate 30 feet without angina was sudden, as is often the case with critical AS. NOT having the valve fixed was not an option in his mind. His biggest concern was not whether he would survive the surgery, but whether the time on cardiopulmonary bypass would affect his brain. Thankfully, he is no more forgetful than he was prior to the surgery! He is eager to get back to work. M
Will be thinking of you Tuesday. Give your father a hug from his “other” daughter, and tell him to hurry up and get well because honestly I am considering having some “work” done and he is the only one I trust. 🙂
I’ll give him a hug, but I think we need to find ourselves a slightly younger plastic surgeon!
My best wishes for an uneventful surgery and recovery for both your father and for you/your family. It is rather frustrating when our bodies don’t hold up to their end of the agreement, or so we regard them in such fashion… I believe, at least, that is part of the larger issue of denial. The timing is not “good”, there are other things to do, etc. Many excuses. Sometimes our way of coping is to not pay attention at all. Frustration for those of us working in health care, but pretty normal and understandable for the human face behind each patient!
We really hope your Dad sails through his surgery and emerges with his dancing shoes on!
Sometimes denial is mostly fear; as I get ‘older’ and have less in front of me and more behind me, I can truly understand. Thankfully life, and those who love us, are often able to intervene and aid in the acknowledgement of what needs to be taken care of and how it needs to be done.
I hope your patient is able to come through this as well. Thank you for the work you do.
Warmth and love to both your patient and your dad. May they come through well. Please do report to us, Miranda.
–Skye
Thanks Skye! I will indeed report back.
Best to your dad and your patient as they approach their respective surgeries. My mother-in-law had valve repair and bypass at 83 and had another great five yers out of that surgery. Incredible to me how the body can take such an assault and keep coming back for more. Holding you up to the Universal Healing Power.
Thank you Lynda! M
I so look forward to by your posts, not just because of my love of dogs and my history of radiation therapy in ’76, but your writing is just so very beautiful and evocative. As a result of extensive radiation I rec’d. to my upper body, at 60 I have many health issues, including, like your dad, severe aortic stenosis/congestive heart failure, and because my lungs are so scarred, I’m waiting for the TAVI/TAVR procedure to be honed enough for my circumstances. But I can honestly say that I never felt any pain, even when I was in the ICU to have 2 liters of fluid drawn from my right lung. My only symptoms were ‘rails’, exhaustion, and not being able to sleep horizontal. So it just may be true that some people don’t experience pain like others.
Thank you Courtney. I am so very sorry for the late effects of radiation you are experiencing. This is quite common in the Hodgkin’s patients who were treated back then–we knew so little compared to what we know now, and it’s why radiation is used much less, to smaller fields and at lower doses for lymphoma now. I always say that my happiest day will be when my services are no longer needed. And you are right–some people do not experience pain as others do. M