The Carol and Michael Hearons Family Advocacy Program

Carol and Mike's Place

Chapter Twelve

August 27, 2015

Dear Readers,

Just when I thought I had tapped my brain regarding tidbits I could share with you that might help you in your own journey, Marcia K. Horn, the feisty CEO of ICAN, emailed me a request for an attitude adjustment.

“Don't hang up that mouse cord yet, Michael. What did you learn about yourself when the doctor told you that your wife had Stage IV cancer? How did you deal with it? And how did you deal with family members and friends who might have equated the news with a death sentence? (After all, they weren't aware of all the advances that have been made in fighting lung cancer or mitigating side effects from chemo drugs, and they were probably relying on decades-old stereotypes!) And what did you do when you came into contact with the occasional medical professional who didn't have one optimistic thing to say about the whole situation?”

I remember that, in November of 2013, Carol and I saw our general practitioner and heard her say that x-rays of Carol's lungs looked like cancer. The word “cancer” caused the inside of my head to ignite, much like the “fight or flight” stress I had experienced in earlier events in life that had threatened my own physical safety. I remember, too, that Carol accepted the news quite stoically, which meant to me that I would be our “morale officer.”

I was scared that November day. But I felt that my role was to be brave and help Carol get all the help she could get from the medical community. That reaction helped us both cope, but I regret not crying till nearly a year later, when she was terminally unconscious, in hospice. If I had it to do over again, I swear I'd cry with her, which was what I often felt like doing but didn't, due to some misguided “hero's code of honor.” Today I think real heroes cry like babies, in total harmony with life-altering tragedies. I have asked Carol for forgiveness, a bit late, for the machismo that kept me from being as supportive as I humanly could have been. The moral to that story? “Share your tears. Don't be perfect. There are times when perfect is perfectly wrong.”

Yes, I saw a tendency in some people to pull away from our situation, but I forgave them as soon as they did, because I knew that, were our situations reversed, I would be avoiding contact with them! We all want life to be a constant stream of good times and happy endings, don't we? Personally, I think an awful lot of us take every opportunity to dodge encounters that might prove it just ain't so.

As for unsympathetic doctors and nurses, Carol and I ran into very few. One radiologist would fly into a rage every time I asked a question, but then he went on vacation and one of his colleagues, a most pleasant fellow, stepped in. He recommended we stop radiation and go with the new chemo drugs our oncologist was recommending. I didn't realize it at the time, but he was indirectly telling me, “Radiation won't get it, Michael. You need a miracle.” A very nice, very down-to-earth man.

To my mind, we never did collide with a Nurse Ratched (i.e., a super-nasty RN). The nurses in the infusion room where Carol got her chemo were all as sweet as pie. Two of them came to see her just before she went into hospice and chatted her up like they had all been classmates at the same high school, even though she was half a century older than they were. Our nurse practitioner was a gem, too. She got attached to Carol, supported her with good info and frank talk, and answered every email I sent her with questions about Carol's care. This NP told me that she went into Carol's room at hospice the night before she died and planted a big kiss on her forehead. You can't get much sweeter than that!

My advice to you if you don't have the same phenomenal luck with doctors and nurses? Talk to the grim ones. Tell them you don't need sourpusses in your life right now. Ask them to lighten up, even if only to offer an encouraging statistic now and then. I think your candor can work positive changes in them. Sometimes you catch a member of the medical community on a bad hair day, and he or she comes off as a real ogre. Give the crabby ones a chance to loosen up, and they can surprise you.

(But that one radiologist may never really join the human race!)

Allow me to take back that parenthetical crack about that one radiologist. That wasn't nice. I'm sure that my timing in becoming the world's most inquisitive caregiver of a Stage IV cancer patient was unfortunate: the radiologist was obviously going through something personal or professional that was stressing him something awful. These things happen to us all, and we should all forgive each other as we take turns losing our cool and/or going around the bend. I think that is a basic courtesy we should extend to each other at every opportunity in these modern times, don't you?

What are the most important things I've learned as a caregiver?

Well, I have learned that no doctor has any business telling a patient how long he or she will live. There are far too many cases of people who outlive their doctors! And we can't forget that new medicines and new surgical procedures are coming online at warp speed as medical researchers probe the architecture of the human genome — this new insight is driving entirely new approaches to curing all kinds of diseases.

I have also been informed that no two cancer cases are exactly alike. That's what makes cancer such a formidable foe. But it also means that when someone dies of the same cancer your patient is afflicted with, it is not inevitable that your patient will perish, too — even if undergoing the same chemo and/or radiation regime — and even if taking all of the same supplementary medicines. The simple fact is: every cancer patient brings a different physical history and disposition to his or her oncology team.

ICAN has also taught this old caregiver (me) the importance of asking questions. Stage IV cancer patients are often far too discouraged to ask for explanations as to why they are being treated with certain meds and procedures, but their caregivers can serve as effective advocates and let the medical community know they want every clarification they can get about their patients' care at hospitals and clinics. Constant curiosity on your part as a caregiver will undeniably encourage the medical professionals you deal with to bring their best game to the collective effort to save your patient.

I also cannot overstate the importance of keeping a personal file on your patient's care at a hospital or clinic. Be sure to train your local oncology team to copy you on anything pertinent to your patient's condition or treatment. The medical community is required by law to give you these documents upon request and will not hesitate to provide you with them. The various reports you collect and read for your own edification can sometimes prompt you to ask questions that lead to improvements in patient care.

I will be back with more observations about caregiving. Just can't say exactly when. The care I am giving in Wisconsin is getting pretty intensive. For now, take note that you shouldn't put off reordering a controlled substance (such as Hydrocodone) till the last minute. There is a time-consuming protocol that must be allowed for, lest you end up with no pain pills to give your patient for days!

—Michael E. Hearons


Guidestar Platinum Seal of Transparency 2021


Federal Tax I.D.: EIN 86-0818253