Home » The House of Mirrors Will Shatter

The House of Mirrors Will Shatter

Recently I was honored to have a piece I wrote published in the Fresno Bee. I am overwhelmed by the positive responses it received, but it also led to many questions from people who are just starting their cancer or care giving journey. It breaks my heart that so many have to follow the path my wife and I did. While I do not claim to have “answers”, I can speak from our experience and hopefully it will be of value to some.

The House of Mirrors Will Shatter

In the beginning, when the word “cancer” was still echoing in my ears for the first time, I recall feeling lost, almost abandoned. We were being barraged with new, unsettling information by the minute, and while our trusted family doctor answered my myriad of questions in perfect honesty, she eroded my strength every time she said, “I don’t know.”

Life during the cancer diagnosis stage was anything but clear, but once the diagnosis was confirmed, it seemed as if the world turned into a house of mirrors. Not only would no one commit to a definitive answer to any question we asked, but also we were now told we were asking the wrong people. Wait, weren’t you the same people who just diagnosed the cancer? How can you stop knowing and suddenly go mute?

The last loving act from our family doctor was to send us to a cancer center we never knew existed, to a doctor we’d never met, to discuss things we knew nothing about, but feared.

This is the beginning of every cancer journey; a day vividly remembered by patients and caregivers alike as the day that life, and everything it once meant, changed forever.

I was the caregiver that day; my wife was the recipient of the diagnosis.  That was four years ago, and if my present-self could go back in time and somehow tell my past-self about the meaningless suffering, the endless fatigue, the heroism, and yes, the joy we have experienced, my past-self would be dumbfounded.

I believe no words can fully express the cancer experience, even to myself.

But there are some thoughts that might make the early steps in your journey easier:

1 – No doctor will give you a definitive answer at the beginning stages of treatment. They see test results and have a sense of probabilities based upon their training and experience, but keep in mind that they bet your trust in them on each answer.  They will not speculate unless you ask them to, and if you do ask, tell them you won’t “hold them to it.”

2 – If you are the caregiver, be brutally honest with the doctors. The situation they find themselves in often intimidates cancer patients, and they stop communicating.  Tell the doctor what you saw, how you think your patient was feeling (and yes, your loved one is your patient, too). Some patients might get upset with this. Take the beating and move on. What you say in an appointment might be the most honest words the doctor gets to hear.

3 – EVERYONE is a part of the care team, from receptionists to pharmacy techs to surgeons. Treat them all with great respect. Show them that you value their help, and you will get the best they have to offer. Ironically, they don’t always remember my name, but they always remember my wife’s!

4 – If at all possible, build a network of support.

5 – Regarding #4, once the news of the diagnosis spreads through your family and friends, prepare to be hit by a wave of love and concern that is overwhelming. After it crests, step back and realize that these people want to do something to help, and often what they do doesn’t. Prepare to forgive. Yes, I know you already have so much on your plate that finding the energy to forgive seems like overkill, but hanging on to anger takes more. Your network will eventually boil itself down to a reliable core of helpers that will not add drama to your lives. That is your true network.

6 – Cancer treatment is not an example of democracy in action. Listen to everyone’s opinion, but the final decisions belong to you and your loved one. This WILL offend someone at some point, most likely a family member. See #5 about forgiveness, even though there is a chance it will not be reciprocal.

7 – Find Joy. I know those words seem to mock you right now, but I mean it.  Whether your time together is long or short, don’t waste it on mourning until it’s time to mourn. The hardest thing about this already difficult job is keeping optimism. Without it, the weight is heavier and the suffering deeper. FIGHT to stay optimistic if you have to, but stay optimistic. It makes a difference.

Over time, the house of mirrors you once felt abandoned in will shatter, and on the other side you will see the people and the path you need. I promise you that there is love and support waiting, but even after four years of caregiving I cannot promise you’ll find the answers to all your questions.

Hold tight to hope and each other. I won’t lie to you, the days ahead of you are some of the most difficult, and meaningful, that you will ever live.

(Originally posted on MyLifeLine.org when I was invited to be a guest blogger for CareGiver month.)


4 Responses to “The House of Mirrors Will Shatter”

  1. Kathryn Lamphier says:

    Read your article in the Fresno Bee. While you stated you did not have “comforting words,” what you gave “Cynthia” in your article was awesome, and very comforting. Thank you!

  2. Philip Stultz says:

    After my wife, beautiful in every way a woman can be beautiful died from ovarian cancer I went through just about every emotion that others go through, the sadness, the anger, the why ( she did everything right, ate, exercised, didn’t smoke or drink kept her weight just right and died of ovarian cancer). I asked all the questions, felt all the confusion etc. Then after going through all of this I developed something in my mind that works for me. ALL of the things that happen to us in our lives are events. There are no values attached to them, they are simply events and the being we call God, or whatever name, is simply the event coordinator. The same god that allows your family to live through a horrific accident allows a school bus full of innocent children to go off of a cliff in Peru. These are simply events, WE apply the descriptions of good or bad to them. We rejoice at birth, cry at funerals and pray. Our prayer makes us feel good, but the message goes to a totally impartial and non emotional being because he (I guess he) devised and runs the system of events to happen exactly how and at the times he set. Death bad, birth good etc., Only to US, we need to have these emotions to make sense of something that was not designed to be sensible it was just designed to BE
    How does this work for me, I no longer have the anger (well not as much), I still feel sadness, but I accept that though this was the worst of times for me, it was part of a design that takes place all over the world for all of us. It is not mean, or evil it just IS, god is not mean or evil or anything else, he is just IS. He took her because that was her time according to the Plan, the expression “It was her time” is absolutely correct. I do the best I can with my life, and my kids and grandkids and whatever happens will happen, I cannot change or alter it in any way, I can just accept it, and be thankful for all the wonderful things I have had, and look forward to the “events” in the future. When it is MY time it will be just that, not good or bad it will just BE.

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